Autism in the Adult

Join Dr. Regan for the final episode of the series "Talking About Autism." This episode focuses on how talk to others when you see autistic characteristics in them.  New Course for Clinicians - Interventions in Autism: Helping Clients Stay Centered, Connect with Others, and Engage in Life New Course for Clinicians: ASD Differential Diagnoses and Associated Characteristics Dr. Regan's Resources Book: Understanding Autism in Adults and Aging Adults, 2nd ed Audiobook Book: Understanding Autistic Behaviors Autism in the Adult website Resources for Clinicians   Read the transcript: 00:00:02,540 --> 00:00:06,380 Hello everyone. 3 00:00:06,390 --> 00:00:13,200 This is Dr Theresa Regan and you are joining me for this episode of autism in the adult podcast. 4 00:00:13,210 --> 00:00:15,620 I am a neuropsychologist, 5 00:00:15,630 --> 00:00:23,730 the parent of a teen on the spectrum and I'm the director of a diagnostic autism clinic for adolescents, 6 00:00:23,730 --> 00:00:26,960 adults and aging adults in central Illinois. 7 00:00:27,540 --> 00:00:33,220 And we are in the third uh segment here of the series that we're calling, 8 00:00:33,220 --> 00:00:34,890 talking about autism, 9 00:00:34,900 --> 00:00:43,350 which has been a listener requested series and a really great topic to review together and discuss. 10 00:00:43,930 --> 00:00:54,260 The first episode was about personal journeys towards getting a diagnosis or receiving a diagnosis and how to communicate with others about that. 11 00:00:54,740 --> 00:01:01,570 The second episode was about navigating emotional atmospheres when talking about autism. 12 00:01:01,570 --> 00:01:02,950 For some reason, 13 00:01:02,970 --> 00:01:21,150 the topic can be very emotionally charged and it can be unexpected at times and intense and thinking about how to navigate all those emotions can help if you're wanting to talk more about the topic with other people. 14 00:01:22,040 --> 00:01:30,930 Uh and this episode is about talking about autism to others when its characteristics in them that you identify, 15 00:01:30,930 --> 00:01:41,060 that you wonder if they might be on the spectrum and you're wanting to bring up the topic and just kind of um suggest that to them or see if they've thought about it. 16 00:01:43,640 --> 00:01:55,060 What I'm going to do first is a segment where I'm going to lay the foundation for how I explain autism to other people. 17 00:01:55,540 --> 00:02:02,610 I think this Foundation may at times be something that you need a way of verbalizing. 18 00:02:02,610 --> 00:02:04,960 If you're going to bring up the topic to others. 19 00:02:05,250 --> 00:02:06,650 This may help some of you. 20 00:02:06,650 --> 00:02:09,100 It may be old hat for some of you. 21 00:02:09,540 --> 00:02:16,530 Um But it'll be after we review that foundational kind of information that I talk about. 22 00:02:16,530 --> 00:02:24,360 Some ways to approach people and ways to talk about the topic or introduced the topic. 23 00:02:26,640 --> 00:02:30,060 So when we talk about autism, 24 00:02:30,640 --> 00:02:53,660 you may be talking to someone who has less knowledge than you do about what it is and at some point in the conversation you may be wanting to clarify what it is so that they can consider the information um in a really accurate way. 25 00:02:55,840 --> 00:03:03,850 What autism is is a neuro behavioral developmental condition that's neurologic. 26 00:03:04,340 --> 00:03:09,800 Uh So what it means is that the brain, 27 00:03:09,810 --> 00:03:17,060 because it's in charge of our thinking skills are academic skills are motor coordination, 28 00:03:17,070 --> 00:03:18,980 our emotions, 29 00:03:18,980 --> 00:03:21,110 our personality structure, 30 00:03:21,120 --> 00:03:22,950 our behavioral patterns. 31 00:03:23,340 --> 00:03:40,450 Um Sometimes the brain has kind of an atypical wiring from birth that whereas one individual may be born with some atypical bone structure or an atypical heart valve. 32 00:03:40,460 --> 00:03:48,150 Um Others are born with an unusual pattern of neurological wiring and that's what this is. 33 00:03:48,430 --> 00:03:57,710 So it's a physical state and research at this point shows us that it's largely driven by the genetic code, 34 00:03:57,710 --> 00:04:20,750 which is not surprising in the sense that we now know it's not the result of poor parenting or um other things that decades ago people were talking about but that it's really um kind of this condition of how the code was revealed during development and how the body developed. 35 00:04:22,440 --> 00:04:27,360 Sometimes for the individuals with developmental differences, 36 00:04:27,370 --> 00:04:32,280 They have a few um atypical areas in their body. 37 00:04:32,280 --> 00:04:37,530 So one person might have a heart valve problem from birth. 38 00:04:37,530 --> 00:04:41,610 That's a congenital difference and may have autism. 39 00:04:41,610 --> 00:04:54,890 And in fact That is um true in the research that I think it's about 30% or so of kids with certain cardiac differences that are congenital, 40 00:04:54,890 --> 00:04:58,500 they're born with them are also on the autism spectrum. 41 00:04:58,500 --> 00:05:11,660 And the reason for that is just that this is a reflection of biology of how the person developed and came together before birth, 42 00:05:13,190 --> 00:05:31,090 neuro behavioral refers to the fact that the diagnosis only describes behavioral patterns and in that as a neuropsychologist behavior is interpreted perhaps more widely than than you might interpret it. 43 00:05:31,090 --> 00:05:31,740 So for me, 44 00:05:31,740 --> 00:05:44,530 behavior has to do with communication and the establishment of relationships and repetitious behavioral patterns and um reacting to the sensory environment. 45 00:05:44,530 --> 00:05:48,260 So all of those are neuro behavioral characteristics. 46 00:05:49,640 --> 00:06:04,170 One thing to understand that might make it easier to think about autism or to explain it to other people is that the brain is an organ that is organized. 47 00:06:04,180 --> 00:06:11,330 It's really organized by pattern and pathway and nuclei and location where, 48 00:06:11,340 --> 00:06:11,780 you know, 49 00:06:11,780 --> 00:06:22,620 you probably know that there are some things that the left side of the brain typically does and some things that the right side is in charge of and the same for the inside versus the outside. 50 00:06:22,630 --> 00:06:41,660 And there are some general patterns about how the brain is organized when a neurologist does a checkup for someone in the emergency room because they've had vision changes and they have weakness on part of their body. 51 00:06:41,670 --> 00:06:46,190 They will check all these kinds of things that the brain is in charge of. 52 00:06:46,190 --> 00:06:48,500 So they'll check the person's vision, 53 00:06:48,500 --> 00:06:50,750 they'll check the person's speech, 54 00:06:50,950 --> 00:06:53,630 their ability to find words that they want to say. 55 00:06:53,630 --> 00:06:56,750 They'll check the person's comprehension of speech. 56 00:06:57,140 --> 00:06:59,130 They'll watch the person walk, 57 00:06:59,140 --> 00:07:01,680 they'll check their strength and their reflexes. 58 00:07:01,750 --> 00:07:11,060 And the reason they do this is that it tells them something about what part of the brain might be struggling. 59 00:07:11,440 --> 00:07:13,920 Because we know for example, 60 00:07:14,040 --> 00:07:17,540 that in general the right side of the body is, 61 00:07:17,550 --> 00:07:21,780 is controlled uh in strength, 62 00:07:21,790 --> 00:07:23,410 in that muscle strength, 63 00:07:23,420 --> 00:07:26,010 by the left side of the brain. 64 00:07:26,020 --> 00:07:31,380 And so if the person's presenting with right sided weakness, 65 00:07:31,410 --> 00:07:34,150 there may be a left side of the brain issue, 66 00:07:34,160 --> 00:07:39,860 But it gives you this sense that when we see clinical signs, 67 00:07:40,440 --> 00:07:46,080 we can make conclusions about pathways and locations in the brain. 68 00:07:47,330 --> 00:07:52,420 The same is true when we look at neuro behavioral patterns. 69 00:07:53,110 --> 00:08:00,700 The reason I bring this up is that I think it gives meaning and cohesion to this concept of autism. 70 00:08:00,700 --> 00:08:22,910 That the reason these characteristics hang together in the same person is that they tend to hang together in certain pathways and connections in the brain and that to me gives this a kind of meaningful picture that oh there, 71 00:08:22,920 --> 00:08:36,160 there are particular freeways in the brain and stops along the way that hang out together anatomically and the expression of differences in that wiring hangs together behaviorally. 72 00:08:37,340 --> 00:08:41,450 So that concept of the anatomy, 73 00:08:41,840 --> 00:08:49,600 the wiring being reflected in the cohesion of these behavioral differences. 74 00:08:49,610 --> 00:08:50,220 To me, 75 00:08:50,220 --> 00:08:51,560 that adds meaning to it. 76 00:08:53,440 --> 00:09:19,030 The next part of neurology that I want to explain is that we realized as a scientific community that these kind of characteristics hang together In about 2% of the population and that they're really important to pay attention to like these have implications and there are things we should understand. 77 00:09:19,040 --> 00:09:30,000 So let's have a name for this so that we can communicate in an efficient way about these pathways that seem to be wired differently. 78 00:09:30,640 --> 00:09:47,350 So we currently use the words autism spectrum and that helps us communicate and study something and learn about it and kind of take a snapshot of someone's needs or how they might process the world. 79 00:09:49,630 --> 00:09:55,850 Now this gets to be complex because we then have to say, 80 00:09:55,850 --> 00:09:56,400 well, 81 00:09:56,400 --> 00:09:59,360 when are we going to call it autism? 82 00:10:00,240 --> 00:10:10,330 Because there will be these um characteristics here and there um that are noticeable. 83 00:10:10,340 --> 00:10:13,560 But when do we actually give it that whole name? 84 00:10:14,540 --> 00:10:20,560 So this is the same process that the scientific community goes through with? 85 00:10:20,570 --> 00:10:22,960 When do we call something dyslexia? 86 00:10:23,840 --> 00:10:26,450 Or when do we call something dementia? 87 00:10:27,140 --> 00:10:29,150 When do we call this? 88 00:10:29,160 --> 00:10:32,400 Alzheimer's dementia versus Lewy body dementia. 89 00:10:32,420 --> 00:10:39,380 So there are these distinctions that we're trying to make that are difficult to say, 90 00:10:39,390 --> 00:10:39,700 oh, 91 00:10:39,700 --> 00:10:39,900 well, 92 00:10:39,900 --> 00:10:46,620 let's say there have to be two characteristics in this area and three characteristics in this area. 93 00:10:46,630 --> 00:10:48,460 And then we're gonna call it this. 94 00:10:49,540 --> 00:10:50,160 Well, 95 00:10:50,540 --> 00:10:59,950 that's helpful in the sense that we add definition to the concept of autism or dementia or whatever we're talking about. 96 00:10:59,960 --> 00:11:03,580 But it is somewhat arbitrary. 97 00:11:03,580 --> 00:11:05,760 Like at some point you have to, 98 00:11:06,440 --> 00:11:08,580 if you're going about this process, 99 00:11:08,750 --> 00:11:11,750 you have to make some type of demarcation. 100 00:11:12,240 --> 00:11:12,900 You know, 101 00:11:12,940 --> 00:11:15,330 this is when we're going to call it this. 102 00:11:16,340 --> 00:11:20,360 An analogy might be um you know, 103 00:11:21,340 --> 00:11:22,800 if we're going to say, 104 00:11:22,800 --> 00:11:24,990 when do we call something purple? 105 00:11:25,940 --> 00:11:26,540 Well, 106 00:11:26,540 --> 00:11:30,210 there are colors that we would all agree are purple. 107 00:11:30,220 --> 00:11:31,110 There are colors, 108 00:11:31,110 --> 00:11:33,190 we would all agree aren't purple. 109 00:11:33,200 --> 00:11:35,620 And then there's kind of this, 110 00:11:35,630 --> 00:11:36,210 you know, 111 00:11:36,210 --> 00:11:40,370 middle progression of Hughes where somebody might say, 112 00:11:40,370 --> 00:11:41,050 well, 113 00:11:41,060 --> 00:11:44,360 I'd call that more red than purple and someone else would say. 114 00:11:44,940 --> 00:11:45,690 Uh well, 115 00:11:45,700 --> 00:11:48,060 I I think it's more purple than red. 116 00:11:48,540 --> 00:12:00,550 Um So there is this area of Hugh that is not captured in the way the diagnosis is currently defined. 117 00:12:00,560 --> 00:12:01,650 In addition, 118 00:12:01,660 --> 00:12:09,620 there are many associated characteristics of autism that are not part of the diagnostic criteria, 119 00:12:09,810 --> 00:12:16,010 but research has shown that they they very frequently occur. 120 00:12:16,640 --> 00:12:17,200 So, 121 00:12:17,210 --> 00:12:18,510 for example, 122 00:12:18,520 --> 00:12:26,330 it's very common for people on the autism spectrum to have sleep disturbance that's not part of the diagnostic criteria, 123 00:12:26,340 --> 00:12:35,160 but it is a very common co occurring um brain characteristic because the brain is in charge of sleep. 124 00:12:36,240 --> 00:12:47,010 Um Also there are people that feel like um atypical motor coordination should be part of the diagnosis because many, 125 00:12:47,010 --> 00:12:53,620 many people on the spectrum have a history of having some difficulty with motor coordination, 126 00:12:53,620 --> 00:12:54,850 not everybody. 127 00:12:54,860 --> 00:13:03,460 But it's common enough that some people feel like it should be one of the diagnostic features that can present. 128 00:13:05,640 --> 00:13:07,600 So in talking about this, 129 00:13:07,690 --> 00:13:12,450 I hope you get the picture that neurology is complicated. 130 00:13:12,940 --> 00:13:21,960 And when we're trying to realize that certain things hang together in a person and are valuable enough that we should be talking about them, 131 00:13:22,740 --> 00:13:28,330 we have to go about some process of defining what we call what. 132 00:13:28,390 --> 00:13:30,200 And the same is true as I said, 133 00:13:30,200 --> 00:13:31,120 for dyslexia. 134 00:13:31,120 --> 00:13:34,560 Like what do we call a reading problem? 135 00:13:34,570 --> 00:13:37,060 Is that when there's a phonetic problem, 136 00:13:37,070 --> 00:13:38,760 a sight reading problem, 137 00:13:38,770 --> 00:13:45,830 a reading comprehension for paragraphs problem and then how how big does the problem have to be like, 138 00:13:45,840 --> 00:13:48,090 is it that they're one grade behind? 139 00:13:48,100 --> 00:13:48,470 You know, 140 00:13:48,470 --> 00:13:57,390 So they're just gets to be this um discussion in scientific communities about what do we call it? 141 00:13:57,390 --> 00:13:58,250 And when do we call it? 142 00:13:58,250 --> 00:14:04,260 That that is true for this diagnostic process? 143 00:14:06,160 --> 00:14:27,250 Some people will end up having what we call sub threshold autism characteristics and that can still be good to understand in the sense that there's a point at which understanding that a behavioral pattern or a reaction to the environment has a neurologic base that can still be helpful, 144 00:14:27,640 --> 00:14:31,670 even if there's not the full picture there, 145 00:14:31,680 --> 00:14:43,150 it may help us understand the person or help the person understand themselves to know that there's kind of this neurologic foundation there for that particular characteristic. 146 00:14:45,040 --> 00:14:48,120 And this happens in families as well. 147 00:14:48,120 --> 00:14:56,630 We talked about the genetic contribution and what may happen in families is that certain people have no characteristics, 148 00:14:56,640 --> 00:15:11,060 certain people have some characteristics and perhaps a few people in the family meet threshold for a full diagnosis as we talked about, 149 00:15:11,070 --> 00:15:14,440 because the diagnosis is neuro behavioral, 150 00:15:14,450 --> 00:15:21,960 it's really important that people understand that thinking skills does not come into this picture at all. 151 00:15:22,440 --> 00:15:27,010 There is no diagnostic criteria for autism that has to do with intellect, 152 00:15:27,020 --> 00:15:30,280 which is good because it doesn't have to do with intellect. 153 00:15:30,290 --> 00:15:33,920 It can co occur with intellectual difficulty, 154 00:15:33,920 --> 00:15:41,060 it can co occur with average thinking skills and it can co occur for those who have giftedness. 155 00:15:41,340 --> 00:15:47,100 So there's no implication when we have this diagnosis, 156 00:15:47,940 --> 00:15:48,500 um, 157 00:15:48,510 --> 00:15:54,690 that intellect will look a certain way or that the future of the individual will look a certain way. 158 00:15:54,700 --> 00:15:59,890 We're just talking about an unusual neurologic level of, 159 00:15:59,900 --> 00:16:07,160 of connection within a certain pathway and these kinds of characteristics tend to hang together in certain people. 160 00:16:09,440 --> 00:16:14,080 So let's switch gears now that we have kind of a foundation about neurology, 161 00:16:14,090 --> 00:16:15,280 what it looks like, 162 00:16:15,280 --> 00:16:17,360 how the diagnosis is created. 163 00:16:18,640 --> 00:16:32,760 Let's go to this topic about how might you approach someone if you want to share with them that you think maybe they're on the spectrum or they have some characteristics that are neurologic or autistic. 164 00:16:33,140 --> 00:16:48,270 Um I'm gonna start by just saying at the beginning that as you may um realize I talked to a lot of people about this topic and sometimes I am invited to talk about it and that gives me permission to talk about it. 165 00:16:48,640 --> 00:16:51,560 Um Other times I bring it up out of the blue, 166 00:16:51,560 --> 00:16:53,770 like we're kind of talking about today, 167 00:16:54,140 --> 00:16:57,540 some of that may be out of the blue in a professional context, 168 00:16:57,540 --> 00:17:11,660 some of it may be uh with people in my general environment and I want you to know that I do not talk to everyone about my thoughts, 169 00:17:12,340 --> 00:17:13,170 um, 170 00:17:14,640 --> 00:17:21,870 indiscriminately so I am not of the opinion that if we notice this pattern and someone else, 171 00:17:21,880 --> 00:17:26,560 we automatically are obliged to talk to them. 172 00:17:27,730 --> 00:17:28,450 Now, 173 00:17:29,440 --> 00:17:49,170 that is because there are some people that I can think of in my life and in my experience in my communities that I know that they have autistic characteristics or I suspect that they would be on the spectrum if they had an assessment, 174 00:17:49,540 --> 00:17:59,960 but I do not have the type of relationship with them where it would be okay for me to bring that up, 175 00:18:01,130 --> 00:18:02,740 for example. 176 00:18:02,750 --> 00:18:04,350 Um you know, 177 00:18:04,350 --> 00:18:09,540 this may be a person that I've had really tough interactions within the past, 178 00:18:09,550 --> 00:18:18,060 or we've had a really difficult relationship and we just don't have the kind of relationship where I have permission to speak into their life. 179 00:18:18,740 --> 00:18:19,270 Um, 180 00:18:19,280 --> 00:18:23,450 I may hope that other people get the opportunity to talk to them about it. 181 00:18:24,140 --> 00:18:24,500 Um, 182 00:18:24,510 --> 00:18:37,570 but I may conclude that anything that I say is probably going to be filtered through this tough relationship that we've had and might even make things worse that now. 183 00:18:37,570 --> 00:18:44,660 I'm less inclined to think about it because I really don't like you talking into my life. 184 00:18:46,140 --> 00:18:46,590 Um, 185 00:18:46,600 --> 00:18:55,950 there may also be contexts in which I think it would be inappropriate to raise it at that place and at that time, 186 00:18:56,440 --> 00:19:00,010 so I'm unlikely to raise it at a funeral. 187 00:19:00,010 --> 00:19:01,060 I may not, 188 00:19:01,540 --> 00:19:02,420 you know, 189 00:19:02,430 --> 00:19:03,170 um, 190 00:19:03,180 --> 00:19:10,580 I feel like I'm going to bring that up to a superior of mine at a professional convention or something like that. 191 00:19:10,580 --> 00:19:11,050 So, 192 00:19:11,440 --> 00:19:11,860 um, 193 00:19:11,870 --> 00:19:20,770 I do pick and choose when I think it would be wise to approach someone and say something. 194 00:19:20,960 --> 00:19:23,140 Now there are exceptions to that. 195 00:19:23,140 --> 00:19:32,380 So let's say this person that I've had kind of a tough relationship with in my life is really in a dire spot, 196 00:19:32,390 --> 00:19:36,720 like they are struggling significantly and they can't figure out why. 197 00:19:36,730 --> 00:19:46,960 And really I believe it's related to things that would be eased if they knew this conceptualization of autism. 198 00:19:48,140 --> 00:19:48,530 Um, 199 00:19:48,540 --> 00:19:49,530 in that situation, 200 00:19:49,530 --> 00:19:55,750 I probably would decide to go ahead and approach them because of their high level of need. 201 00:19:55,760 --> 00:19:58,130 So in that situation, 202 00:19:58,140 --> 00:20:04,760 the context would override the relationship concerns that I have. 203 00:20:05,240 --> 00:20:10,850 So I always kind of make that judgment based on the relationship I have with the person, 204 00:20:11,340 --> 00:20:15,060 the context that we're in and and maybe the time, 205 00:20:15,070 --> 00:20:16,950 like is this the time to do it? 206 00:20:18,040 --> 00:20:27,100 And then I would make exceptions based on just what I think would be wise at that time based on their need based on where they're at. 207 00:20:27,110 --> 00:20:27,490 Um, 208 00:20:27,490 --> 00:20:33,470 and based on what I could contribute in cases where we do decide, 209 00:20:33,720 --> 00:20:33,990 you know, 210 00:20:33,990 --> 00:20:36,260 I think I'm going to at least bring it up. 211 00:20:36,740 --> 00:20:57,860 One thing that I find helpful is to think about this image of putting our toe in the water that we don't have to bring up the topic in all its glory and detail and kind of get down to the nitty gritty and convince someone that this is correct. 212 00:20:57,870 --> 00:21:02,290 We can kind of test the waters so to speak. 213 00:21:02,290 --> 00:21:11,230 So we could bring it up something gently or bring up something in a non direct way. 214 00:21:11,240 --> 00:21:11,920 Um, 215 00:21:11,920 --> 00:21:14,330 and kind of test the waters to see, 216 00:21:14,340 --> 00:21:20,040 does this person have a strong negative reaction to the topic, 217 00:21:20,050 --> 00:21:24,040 do they jump on board and seem really interested to talk about it? 218 00:21:24,050 --> 00:21:26,670 Do you think there's an opening to go deeper? 219 00:21:27,040 --> 00:21:31,640 So if there's some opening and you feel like there's some receptiveness, 220 00:21:31,640 --> 00:21:35,430 you can always share more or provide more information. 221 00:21:35,440 --> 00:21:38,150 So that's one thing that I keep in mind too, 222 00:21:38,150 --> 00:21:40,840 like putting feelers out, 223 00:21:40,850 --> 00:21:47,060 how how comfortable is this person with introducing this new topic, 224 00:21:47,070 --> 00:21:57,420 How open might they be when you decide you are going to share something or bring up the topic, 225 00:21:57,430 --> 00:22:00,040 you could do this in a variety of ways. 226 00:22:00,050 --> 00:22:14,730 So one way might be to share a personal story that kind of gives us an in in the sense that um I have a reason for bringing this up because I've experienced it and this is my experience. 227 00:22:14,730 --> 00:22:25,540 So if you're a person who's been diagnosed and you found that helpful or if you're a parent of a child or young adult who's been diagnosed, 228 00:22:25,550 --> 00:22:28,670 sometimes that just gives you, 229 00:22:29,340 --> 00:22:36,830 um it creates a context for the person to hear your wisdom based on your experience. 230 00:22:36,840 --> 00:22:37,600 So, 231 00:22:37,610 --> 00:22:38,040 oh, 232 00:22:38,040 --> 00:22:40,400 you've had this personal experience, 233 00:22:40,410 --> 00:22:43,350 I would like to hear what you have to say. 234 00:22:44,140 --> 00:22:52,770 So sometimes approaching it in that way I'm bringing it up because what you're experiencing reminds me of myself. 235 00:22:55,640 --> 00:23:00,900 Sometimes you can bring it up in the context of new learning that you've had. 236 00:23:00,910 --> 00:23:05,430 So maybe you're not a person who has experienced that yourself, 237 00:23:05,440 --> 00:23:19,120 but maybe you have recently heard a lecture or read a book or listen to a podcast and the light bulb just went off about various things maybe about yourself and about, 238 00:23:19,130 --> 00:23:19,720 you know, 239 00:23:19,720 --> 00:23:22,660 how neurology impacts people in general, 240 00:23:22,670 --> 00:23:32,350 like this has opened up a curiosity in you and you've really been thinking about that for yourself and you're thinking about it for this other person. 241 00:23:34,240 --> 00:23:35,600 And in that context, 242 00:23:35,600 --> 00:23:50,260 if you do lead with I learned about this and I've been thinking about it regarding myself and I realized that I tend to do this and this is really neurologically based. 243 00:23:50,260 --> 00:23:51,780 It's so interesting to me, 244 00:23:51,780 --> 00:23:57,460 it's helped me so much when we do lead with a personal experience. 245 00:23:57,470 --> 00:23:59,670 Even if it's not a diagnosis, 246 00:23:59,690 --> 00:24:00,340 you know, 247 00:24:00,340 --> 00:24:13,950 I have this personal experience where I've learned this about myself and then introducing the other person to think about themselves may be just a nice flow to the conversation. 248 00:24:16,940 --> 00:24:17,270 Mm hmm. 249 00:24:17,840 --> 00:24:23,980 Another way to approach it is to have a wondering or a curious tone. 250 00:24:23,990 --> 00:24:38,080 I think what we want to avoid is to have any kind of lecturing tone or that we are going to argue our point and that they must agree with us by the end of the conversation. 251 00:24:38,080 --> 00:24:47,380 I think what's likely to happen in that sense is that they can feel backed into a corner and they can push back really just to have more space. 252 00:24:47,840 --> 00:24:52,010 And so if we approach it more as a wondering, 253 00:24:52,540 --> 00:24:53,110 you know, 254 00:24:53,110 --> 00:24:54,250 I've been wondering, 255 00:24:54,250 --> 00:25:04,400 I've noticed this or that and I've been wondering if autism would be a way to understand what's been happening and kind of open up possibilities. 256 00:25:04,410 --> 00:25:08,360 What do you think or what's your thought about that? 257 00:25:10,050 --> 00:25:17,050 That gives the person's space to react and to think and they don't feel rushed or pushed. 258 00:25:17,640 --> 00:25:18,450 Um, 259 00:25:18,940 --> 00:25:22,360 and that freedom to explore the thought, 260 00:25:22,840 --> 00:25:23,340 um, 261 00:25:23,340 --> 00:25:27,570 with you or on their own can really bring about some fruit, 262 00:25:27,580 --> 00:25:28,270 I think, 263 00:25:28,740 --> 00:25:29,690 um, 264 00:25:29,700 --> 00:25:41,560 that can encourage people to learn more and give people space to get their in their own time now as a professional. 265 00:25:41,740 --> 00:25:57,190 I also have contexts where I am with a patient and I'm talking to them about this kind of based on my own clinical expertise and they've come in as a patient and I use the word patient because I work in a hospital, 266 00:25:57,200 --> 00:26:01,490 but you could say client or whatever kind of fits the situation. 267 00:26:01,490 --> 00:26:03,190 If you work in a school, 268 00:26:03,200 --> 00:26:04,560 there would be students, 269 00:26:04,560 --> 00:26:05,260 et cetera, 270 00:26:05,940 --> 00:26:08,360 and they have come in for some reason. 271 00:26:08,360 --> 00:26:13,900 And sometimes it has to do with an autism diagnosis and sometimes it does not. 272 00:26:13,910 --> 00:26:17,120 I work with patients who have all kinds of different backgrounds, 273 00:26:17,120 --> 00:26:25,670 someone may have had a head injury and be coming in for that or a stroke or an assessment for dementia. 274 00:26:26,040 --> 00:26:29,780 And I just realized in the midst of that, 275 00:26:29,790 --> 00:26:32,860 that there's an undiagnosed autism spectrum. 276 00:26:32,870 --> 00:26:35,800 So sometimes I'm bringing it up cold, 277 00:26:35,810 --> 00:26:36,310 um, 278 00:26:36,310 --> 00:26:38,910 where there's no context and they're not expecting it. 279 00:26:38,920 --> 00:26:42,860 And other times I'm bringing it up or they are expecting it. 280 00:26:44,640 --> 00:26:45,360 Um, 281 00:26:46,140 --> 00:26:48,880 I think it's pretty straightforward when they're expecting it. 282 00:26:48,880 --> 00:26:50,630 So I'm not going to cover that. 283 00:26:50,630 --> 00:26:53,880 I think what I said at the beginning of the episode, 284 00:26:53,890 --> 00:26:58,460 does summarize how I how I explain autism to people, 285 00:26:58,840 --> 00:27:00,800 but if they're not expecting it, 286 00:27:00,810 --> 00:27:08,170 what I find helpful is to summarize to them what they have said to me, 287 00:27:08,640 --> 00:27:12,060 so that I make sure I understood it correctly. 288 00:27:12,940 --> 00:27:15,660 But I'll take that summary and I'll say, 289 00:27:15,780 --> 00:27:16,090 you know, 290 00:27:16,090 --> 00:27:20,050 it sounds like you're a person who uh, 291 00:27:20,060 --> 00:27:23,440 really gets revived by alone time. 292 00:27:23,440 --> 00:27:32,870 And sometimes the drama of female relationships just actually feels overwhelming that you would be more content with your, 293 00:27:32,880 --> 00:27:34,660 your cat in a good book. 294 00:27:34,660 --> 00:27:39,380 And sometimes people at work seem to think you're standoffish or whatever. 295 00:27:39,380 --> 00:27:48,750 And so I go through the social part and then I'll say it also seems like when you're interested in something you are all in, 296 00:27:48,750 --> 00:27:49,100 like, 297 00:27:49,110 --> 00:27:50,950 you love that thing. 298 00:27:51,340 --> 00:27:51,780 Uh, 299 00:27:51,790 --> 00:27:56,770 and so I'll go through each of the criteria just saying that. 300 00:27:57,540 --> 00:28:00,090 So I'm not bringing up the word autism, 301 00:28:00,280 --> 00:28:06,010 I'm just showing them that I've heard their description of themselves. 302 00:28:07,640 --> 00:28:10,400 And I in my own mind, 303 00:28:11,340 --> 00:28:18,360 I'm saying it back because I know that these things represent some of those criteria, 304 00:28:20,940 --> 00:28:22,910 then I will say, 305 00:28:22,920 --> 00:28:23,630 you know, 306 00:28:23,640 --> 00:28:31,010 when these kinds of things happen and they're expressed in the same person. 307 00:28:31,440 --> 00:28:34,000 One of the things I think about is neurology, 308 00:28:34,000 --> 00:28:37,000 because these patterns of neurology, 309 00:28:37,000 --> 00:28:39,500 these freeways or highways in the brain, 310 00:28:40,470 --> 00:28:40,840 you know, 311 00:28:40,840 --> 00:28:46,500 there are patterns that contain these characteristics and when they happen together, 312 00:28:46,500 --> 00:28:49,520 often it's because of a neurologic, 313 00:28:49,530 --> 00:28:50,660 um, 314 00:28:50,670 --> 00:28:59,540 space in there that has some different kinds of wiring that people are noticing and when we see that in the same person, 315 00:28:59,550 --> 00:29:03,850 we have a name for that and what we call that is autism. 316 00:29:05,040 --> 00:29:10,060 And then I'll just kind of let them process or react. 317 00:29:10,640 --> 00:29:12,770 Now I have to say that I am, 318 00:29:13,140 --> 00:29:17,050 I am very surprised um, 319 00:29:17,060 --> 00:29:20,070 at how many times somebody in the room, 320 00:29:20,070 --> 00:29:24,600 whether it's a family member or themselves will say I thought so, 321 00:29:24,610 --> 00:29:29,030 but I didn't want to bring it up and maybe there's a group of three of them, 322 00:29:29,030 --> 00:29:29,360 right? 323 00:29:29,360 --> 00:29:31,360 Like the client and family members, 324 00:29:31,360 --> 00:29:33,970 but they've never talked to each other about it. 325 00:29:33,980 --> 00:29:35,520 They've just been wondering, 326 00:29:35,520 --> 00:29:38,910 but they don't feel like it's okay to bring the topic up. 327 00:29:38,920 --> 00:29:40,960 Kind of like we talked about before. 328 00:29:40,980 --> 00:29:42,990 Like is this okay to mention, 329 00:29:43,000 --> 00:29:44,450 is this okay to think about? 330 00:29:44,840 --> 00:29:46,890 And so we'll go from there. 331 00:29:49,220 --> 00:29:59,080 Sometimes this is something that they have never considered and they are surprised and kind of pause and have to take that in. 332 00:29:59,090 --> 00:30:01,950 And I might kind of ask them, 333 00:30:01,950 --> 00:30:03,560 what are your thoughts about that. 334 00:30:04,340 --> 00:30:05,170 Um, 335 00:30:06,340 --> 00:30:08,110 if there is, 336 00:30:08,120 --> 00:30:09,190 uh, 337 00:30:09,200 --> 00:30:14,790 a misunderstanding or they just don't know much about autism or they're thinking of it in a different way. 338 00:30:14,800 --> 00:30:17,350 I just try to give that education, 339 00:30:18,440 --> 00:30:24,530 if the person seems to be stressed by that or to be upset, 340 00:30:24,540 --> 00:30:27,670 I just try to figure out what the barrier is. 341 00:30:28,140 --> 00:30:33,680 So if it's not an information gap that I fill in with education, 342 00:30:33,680 --> 00:30:38,550 it may be an emotional reaction like we talked about last time, 343 00:30:40,540 --> 00:30:45,640 um I may say it sounds like maybe you feel like this is a criticism, 344 00:30:45,650 --> 00:30:46,090 you know, 345 00:30:46,090 --> 00:30:48,410 this isn't a criticism to me, 346 00:30:48,420 --> 00:31:01,210 it's really just the self revelation that can help you so much understand yourself and what you need and um really just feel better in your own skin. 347 00:31:01,210 --> 00:31:03,360 There are lots of things we can recommend. 348 00:31:05,640 --> 00:31:19,960 One of the things I try to do if the person is not really feeling open to the diagnosis or the discussion at that time is just to try to leave the door open. 349 00:31:20,540 --> 00:31:22,600 So I might say, 350 00:31:22,610 --> 00:31:23,170 well, 351 00:31:23,170 --> 00:31:27,150 if you ever want to talk more about that topic, 352 00:31:27,160 --> 00:31:29,960 let me know because I'd be happy to do that. 353 00:31:30,540 --> 00:31:32,640 Um but in my mind, 354 00:31:32,640 --> 00:31:34,620 I also know that I just, 355 00:31:34,690 --> 00:31:40,210 I may just want to plant the seed and let them go and not push the topic, 356 00:31:40,250 --> 00:31:42,460 but now that I've introduced it, 357 00:31:42,840 --> 00:31:45,440 they may process that over time. 358 00:31:45,460 --> 00:31:48,460 Someone else may bring it up to them in the future. 359 00:31:48,470 --> 00:31:51,180 It may all fall together to them, 360 00:31:51,180 --> 00:31:52,660 but at a different time. 361 00:31:52,670 --> 00:31:55,950 So planting a seed is okay as well. 362 00:31:58,400 --> 00:31:59,590 I may also say, 363 00:31:59,590 --> 00:32:00,060 you know, 364 00:32:00,710 --> 00:32:04,960 at some point it doesn't matter if we call it that, 365 00:32:04,970 --> 00:32:10,190 but I do think there's some neurology behind it and because of that, 366 00:32:10,190 --> 00:32:13,270 I have some things that I think would really be helpful for you. 367 00:32:13,740 --> 00:32:18,920 So sometimes the person may be able to consider that there is some neurology there, 368 00:32:18,940 --> 00:32:21,770 but not wanting to call it a particular thing? 369 00:32:22,140 --> 00:32:23,510 Uh and other times, 370 00:32:23,520 --> 00:32:23,880 you know, 371 00:32:23,880 --> 00:32:31,950 I just try to focus on what I think would be helpful regardless of whether the person wants to call it a specific thing. 372 00:32:34,340 --> 00:32:39,580 Other times I just let it be, 373 00:32:39,580 --> 00:32:46,680 I don't bring up the topic or maybe I have and it's been shut down and I just, 374 00:32:46,740 --> 00:32:53,130 in my own mind think of the person through that lens when it's helpful. 375 00:32:53,130 --> 00:32:59,770 So maybe there is a behavior or a communication that otherwise I would feel a bit perplexed about. 376 00:33:00,440 --> 00:33:11,950 Um but because I can remind myself that there neurology maybe um autistic in nature that that can help me understand. 377 00:33:11,960 --> 00:33:17,310 So it could help me um when I interact with the individual, 378 00:33:17,320 --> 00:33:23,760 even if we're not kind of overtly calling ah the characteristics by any particular name. 379 00:33:25,440 --> 00:33:33,410 Those are a summary of my thoughts when it comes to describing autism and autistic characteristics to others, 380 00:33:33,420 --> 00:33:44,560 introducing that topic kind of feeling out how they think about it and planting a seed for someone to process that information over time. 381 00:33:45,840 --> 00:33:49,760 I'm really glad you joined me for this last episode of the series, 382 00:33:49,760 --> 00:34:02,960 talking about autism and next time we are going to begin a new series that has to do with the experience and expression of autistic characteristics across the lifespan. 383 00:34:03,840 --> 00:34:08,850 I'm going to be talking about topics such as the developing nervous system. 384 00:34:08,850 --> 00:34:13,420 So the brain doesn't fully develop until about 21 years of age. 385 00:34:13,420 --> 00:34:21,260 So how can that impact the evolution of autistic characteristics through childhood and adolescence? 386 00:34:21,440 --> 00:34:27,600 We're going to talk about hormonal shifts and how that can impact these things puberty, 387 00:34:27,600 --> 00:34:28,630 menstrual cycles, 388 00:34:28,630 --> 00:34:29,540 pregnancy, 389 00:34:29,550 --> 00:34:31,100 menopause aging, 390 00:34:31,740 --> 00:34:38,620 and we're also going to talk about other things related to aging on the autism spectrum, 391 00:34:38,630 --> 00:34:46,260 such as the experience of shifts and how the characteristics our felt or expressed. 392 00:34:47,440 --> 00:34:48,460 Until then, 393 00:34:48,570 --> 00:34:51,690 I hope you have good talks about autism with each other.  

Join Dr. Regan for the second episode of the series "Talking About Autism." This episode focuses on how the thoughtful navigation of emotions during conversations about autism can create space and freedom for more discussions. New Course for Clinicians - Interventions in Autism: Helping Clients Stay Centered, Connect with Others, and Engage in Life New Course for Clinicians: ASD Differential Diagnoses and Associated Characteristics Dr. Regan's Resources Book: Understanding Autism in Adults and Aging Adults, 2nd ed Audiobook Book: Understanding Autistic Behaviors Autism in the Adult website Resources for Clinicians   Read the transcript: 00:00:05,740 --> 00:00:06,480 Hello, 3 00:00:06,490 --> 00:00:12,460 This is Dr Theresa Regan. Thank you for joining me for this episode of Autism in the Adult. 4 00:00:13,140 --> 00:00:19,260 I am happy that you're joining us for this series called Talking about Autism. 5 00:00:19,270 --> 00:00:37,150 This is the second episode, and I had originally predicted it was going to be about talking to others when you see autistic characteristics in them and you wonder if a diagnostic evaluation would be helpful for them? 6 00:00:38,740 --> 00:00:44,170 What happened is that, as I'm mulling around the topics for the series, 7 00:00:44,180 --> 00:00:49,560 I really couldn't get my mind off what was going to be the 3rd episode -- 8 00:00:50,140 --> 00:00:56,260 which I'm going to call "navigating emotional atmospheres"... when we're talking about autism. 9 00:00:57,040 --> 00:01:13,790 And I've come to the conclusion that I'm going to cover that topic here in the second episode because I feel like it's really important to consider before we talk to other people about autistic characteristics. 10 00:01:13,790 --> 00:01:20,860 How would we navigate the emotions that are sometimes present around the topic itself? 11 00:01:21,640 --> 00:01:39,160 Last episode we talked about Talking About Autism when you are on a journey toward evaluation yourself ... when you're considering that, or when you have a new diagnosis and you might want to talk to people about your diagnosis and about autism. 12 00:01:40,640 --> 00:01:40,960 So, 13 00:01:40,960 --> 00:01:50,260 this episode is going to be focused a little bit more on navigating the complexity of people's emotional responses. 14 00:01:50,740 --> 00:01:54,850 And as we talked about in the first episode, 15 00:01:54,850 --> 00:02:03,690 it really is an emotionally charged topic and in some ways that's a bit mystifying to me. 16 00:02:03,700 --> 00:02:12,650 ... the amount of emotion people have about a topic that sometimes they're not even really impacted by on a personal level, 18 00:02:15,840 --> 00:02:22,160 but talking about autism often does involve navigating emotional atmospheres. 19 00:02:22,780 --> 00:02:23,000 Um, 20 00:02:23,000 --> 00:02:27,760 and it's hard to predict what the atmosphere is going to look like or how complex it is. 21 00:02:29,040 --> 00:02:38,010 Sometimes the atmosphere may be charged because we would like to talk to someone about the topic and how it impacts, 22 00:02:38,010 --> 00:02:38,690 let's say, 23 00:02:38,690 --> 00:02:40,110 our own family, 24 00:02:40,120 --> 00:02:44,600 or how it impacts someone in the family or how it impacts you. 25 00:02:44,610 --> 00:02:51,730 And there can just be this unusual response of 26 00:02:51,740 --> 00:02:53,630 a lot of emotional charge. 27 00:02:53,640 --> 00:03:04,360 I spoke with a young woman recently who was saying that she was shocked at how angry people in her family were when she brought the topic up. 28 00:03:04,940 --> 00:03:10,160 And that is not an unusual thing for someone to share, that 29 00:03:10,170 --> 00:03:12,310 it can really charge people up. 30 00:03:12,320 --> 00:03:13,660 And um, 31 00:03:14,350 --> 00:03:17,440 sometimes you're not just bringing up a topic, 32 00:03:17,450 --> 00:03:22,560 you're bringing up all this emotional processing and content. 33 00:03:24,240 --> 00:03:25,270 Other times, 34 00:03:25,270 --> 00:03:30,560 people on this journey toward an autism diagnosis or self awareness, 35 00:03:30,940 --> 00:03:33,150 they may feel other emotions too. 36 00:03:33,150 --> 00:03:39,460 They might feel relief that they finally understand how they're wired. 37 00:03:39,940 --> 00:03:40,330 Um, 38 00:03:40,330 --> 00:03:51,550 they might share that this is such a meaningful and important thing to them that they really have a lot of emotion about the value of the diagnosis. 39 00:03:52,140 --> 00:03:55,130 Other people may really be in a different spot. 40 00:03:55,130 --> 00:03:59,150 They might be in this spot where they're processing. 41 00:03:59,160 --> 00:03:59,740 Um, 42 00:03:59,750 --> 00:04:01,040 just surprise. 43 00:04:01,040 --> 00:04:05,950 Like they were not expecting it, processing maybe grief or fear. 44 00:04:05,960 --> 00:04:06,730 Um, 45 00:04:06,740 --> 00:04:24,830 a lot of emotions can come with this diagnosis or this discussion. And for people who have been in the autistic community for a while and they have this deep passion to advocate for, 46 00:04:24,840 --> 00:04:25,670 um, 47 00:04:25,680 --> 00:04:27,930 anyone who um, 48 00:04:27,940 --> 00:04:37,810 has diversity in their neurology ... and many times that passion comes with a lot of emotional charge as well. 49 00:04:38,080 --> 00:04:55,940 And so we may have people who are so passionate about what language is used or how we should interact with others or support others or whether we should have interventions for autism or not. 50 00:04:55,950 --> 00:05:09,050 So there can also be this passionate approach to what is right or wrong to say or do for the autistic individual or within the community. 51 00:05:11,240 --> 00:05:22,150 What can happen is that the presence of this emotion can shut down the discussion before it's really launched. 52 00:05:22,540 --> 00:05:31,980 So we have something come up and it's responded to with strong emotion and it's very common, 53 00:05:31,980 --> 00:05:39,190 I think for that strong emotion to overtake the topic itself and then people in the room realize, 54 00:05:39,200 --> 00:05:40,000 oh, 55 00:05:40,010 --> 00:05:40,570 okay, 56 00:05:40,570 --> 00:05:42,960 this is not okay to talk about. 57 00:05:42,970 --> 00:05:45,830 This was a really strong, 58 00:05:45,840 --> 00:05:47,050 passionate, 59 00:05:47,580 --> 00:05:54,850 intense reaction and I feel like I'm getting the emotional message that this is not okay. 60 00:05:56,140 --> 00:05:56,830 In fact, 61 00:05:56,840 --> 00:05:58,530 I think to myself, 62 00:05:58,540 --> 00:06:06,830 if I wanted to make sure that it was not okay to talk about some particular topic and that everyone around me knew it, 63 00:06:06,840 --> 00:06:13,160 I probably would be very quick to have emotional responses. 64 00:06:13,170 --> 00:06:20,350 I'd probably be ready with criticism or judgment or correction or logical arguments. 65 00:06:20,740 --> 00:06:21,440 Um, 66 00:06:21,450 --> 00:06:27,850 maybe even just joking at someone's expense or whatever I could do to make 67 00:06:28,740 --> 00:06:35,360 the discussion so intense that people realize that needs to be shut down. 68 00:06:35,740 --> 00:06:43,170 So when I am approaching this topic of how do we say autism is okay to talk about? 69 00:06:43,170 --> 00:06:44,830 Let's bring it to the table. 70 00:06:44,830 --> 00:06:46,160 It's always okay. 71 00:06:46,160 --> 00:06:48,100 How do we create that atmosphere? 72 00:06:48,110 --> 00:06:54,350 I think one of the things we focus on is protecting the emotional atmosphere. 73 00:06:54,840 --> 00:06:55,610 Um, 74 00:06:55,620 --> 00:07:10,600 and being aware that the emotions that we are filtering into the conversation may actually really detract from someone's comfort level of bringing it up. 75 00:07:10,670 --> 00:07:14,860 It may detract from people's ability to process the topic itself. 76 00:07:15,240 --> 00:07:21,230 And so I'm just really conscious of trying to attend to that. 77 00:07:21,240 --> 00:07:24,060 Whenever I speak with someone about the topic, 78 00:07:28,340 --> 00:07:31,780 there's a lot of emotion about what to call things. 79 00:07:31,790 --> 00:07:34,310 So what language are we using? 80 00:07:34,320 --> 00:07:46,700 Some people really strongly want the language of "the autistic individual" or "the autistic" because they really self identify with that neurology. 81 00:07:46,700 --> 00:07:47,620 It's who they are. 82 00:07:47,620 --> 00:07:49,000 It's how they're knit together. 83 00:07:49,340 --> 00:07:51,650 They welcome that identification. 84 00:07:52,040 --> 00:07:57,090 Other people do not want to be known as an autistic individual. 85 00:07:57,090 --> 00:08:07,660 They feel more comfortable saying they are an individual on the spectrum or they have autism, and other people have strong emotions against that. 86 00:08:07,940 --> 00:08:18,120 So we even have this really emotional response to what words are okay to use and that can really um, 87 00:08:18,130 --> 00:08:20,360 come into the discussion as well. 88 00:08:21,740 --> 00:08:29,510 People may have very charged reactions about the, 89 00:08:29,790 --> 00:08:33,420 the peaks and valleys of anyone's journey and by that, 90 00:08:33,420 --> 00:08:37,460 I mean that in our culture, 91 00:08:37,470 --> 00:08:51,060 if someone is struggling with something and oftentimes people on a journey toward diagnosis have come to that journey because they've hit some season of struggle. 92 00:08:51,440 --> 00:08:52,550 Um, 93 00:08:52,940 --> 00:08:54,130 in our culture, 94 00:08:54,130 --> 00:09:07,990 we're very focused on fixing these struggles and sometimes that in itself can shut down discussions about complex things, 95 00:09:07,990 --> 00:09:10,660 about things that are not easily fixed. 96 00:09:12,540 --> 00:09:21,670 People on a journey probably get a lot of advice before they get to this journey of assessment for autism. 97 00:09:21,740 --> 00:09:24,560 They've probably gotten a lot of advice like, 98 00:09:25,040 --> 00:09:25,370 uh, 99 00:09:25,380 --> 00:09:30,900 "that wouldn't happen in my house" or "this is how we did it and it fixed it completely," 100 00:09:30,910 --> 00:09:32,540 or um, 101 00:09:32,550 --> 00:09:38,510 "these are the seven steps to being free from anxiety and if you do these, 102 00:09:38,520 --> 00:09:40,660 then you shouldn't have a problem." 103 00:09:43,040 --> 00:09:43,400 Um, 104 00:09:43,410 --> 00:09:45,270 in my own personal journey, 105 00:09:45,270 --> 00:09:47,540 I really experienced that a lot. 106 00:09:47,550 --> 00:09:48,300 Um, 107 00:09:48,310 --> 00:09:51,940 as a parent, and I know this podcast is about adults, 108 00:09:51,940 --> 00:09:56,750 but the topic of emotional processing um, 109 00:09:56,760 --> 00:10:00,460 is just a very human topic across the lifespan. 110 00:10:01,140 --> 00:10:01,500 Now, 111 00:10:01,500 --> 00:10:05,210 one of the things that my son on the spectrum struggled with, 112 00:10:05,220 --> 00:10:05,750 um, 113 00:10:05,760 --> 00:10:09,090 so much was sleep and also as an infant, 114 00:10:09,090 --> 00:10:12,310 he was just very colicky and upset. 115 00:10:12,310 --> 00:10:12,500 He, 116 00:10:12,500 --> 00:10:14,960 he had a difficulty calming. 117 00:10:15,340 --> 00:10:16,110 Um, 118 00:10:16,120 --> 00:10:18,550 and a lot of things went into that, 119 00:10:18,550 --> 00:10:20,050 but um, 120 00:10:20,050 --> 00:10:23,880 we were really struggling with a sleep issue. 121 00:10:23,880 --> 00:10:30,260 And in fact he didn't End up sleeping through the night on a consistent basis until he was eight years old. 122 00:10:30,740 --> 00:10:34,020 And that was really difficult on him. 123 00:10:34,030 --> 00:10:48,410 It made all the other features more difficult for him to manage and it impacted our resilience to and our ability to um really sustain wellness as a household. 124 00:10:48,410 --> 00:10:50,550 So I remember um, 125 00:10:50,560 --> 00:10:52,260 getting this, 126 00:10:52,270 --> 00:11:07,050 he was in daycare twice a week and I went to pick him up one day when he was 10 months old and the nursery leader who had had him in her, 127 00:11:07,060 --> 00:11:10,360 they call it class in her class for um, 128 00:11:10,370 --> 00:11:13,020 from the beginning of when we started going, 129 00:11:13,530 --> 00:11:21,880 she left me a note and it said "his crying is disruptive to the class. 130 00:11:22,440 --> 00:11:25,050 Please have him better by tomorrow." 131 00:11:26,030 --> 00:11:31,570 And that is kind of an example of this, 132 00:11:33,740 --> 00:11:46,730 this mindset that things can be fixed if only you're good enough parent or if only you're committed enough to be um, 133 00:11:46,740 --> 00:11:52,960 a calm person or if only you're committed enough to be a good spouse, 134 00:11:53,040 --> 00:11:53,410 you know, 135 00:11:53,410 --> 00:11:54,750 whatever that looks like. 136 00:11:55,590 --> 00:12:00,270 And not only was I a struggling mom, 137 00:12:00,290 --> 00:12:05,210 but now I had been told that I should have this fixed. 138 00:12:05,220 --> 00:12:08,260 I should be able to fix it. 139 00:12:09,010 --> 00:12:14,770 And also another example when he was  140 00:12:14,780 --> 00:12:16,200 a couple of years old, 141 00:12:16,200 --> 00:12:17,470 two or three years old. 142 00:12:17,480 --> 00:12:22,840 I was looking into Melatonin to assist with sleep. 143 00:12:22,850 --> 00:12:49,260 And I read the reviews online for different products and a mother on their wrote this scathing comment that um using Melatonin for children is child abuse because um any good parents should know how to get their kids down for bed and that would never happen in her house. 144 00:12:49,640 --> 00:12:52,450 So it was long... long,  145 00:12:52,450 --> 00:12:54,130 that's the gist of it though. 146 00:12:54,140 --> 00:12:55,850 Um and so, 147 00:12:55,860 --> 00:12:56,420 you know, 148 00:12:56,420 --> 00:13:05,290 these messages that are so emotionally intense and not only does it bring about this shame and blame and hopelessness, 149 00:13:05,300 --> 00:13:09,780 but it also creates this atmosphere where it's clear 150 00:13:09,780 --> 00:13:12,310 it is not okay to say that you're struggling. 151 00:13:12,640 --> 00:13:24,460 Um it's not okay to bring up um that you've tried everything and you don't know what's going on um because not only are you struggling, 152 00:13:24,460 --> 00:13:34,460 but apparently it's also something that you could very well fix um, and you should fix and therefore the struggle is also your fault. 153 00:13:34,940 --> 00:13:39,680 So these emotional um... these emotional charges, 154 00:13:39,690 --> 00:13:48,370 I think really dampen our ability to give people the freedom to talk about all the ups and downs of their life, 155 00:13:48,370 --> 00:13:53,590 like life is messy and good and hard and you know, 156 00:13:53,590 --> 00:14:00,860 I feel like I can bring up any topic um and realize that it's okay to share that. 157 00:14:01,340 --> 00:14:02,320 Instead. 158 00:14:02,320 --> 00:14:10,550 I think we have a lot of emotional overtones to what's okay to bring up and what's okay to talk about. 159 00:14:12,640 --> 00:14:19,860 I remember um being struck too uh when my son was about a year old, 160 00:14:20,440 --> 00:14:23,870 one of my colleagues had an infant, 161 00:14:23,870 --> 00:14:25,170 this was her first child, 162 00:14:25,180 --> 00:14:29,840 and after I think five days after she was born, 163 00:14:29,850 --> 00:14:39,100 um my colleague brought her in and she was just this bundle of pink, cute as can be, slept the whole time. 164 00:14:39,600 --> 00:14:41,610 And you know, 165 00:14:41,610 --> 00:14:45,860 that was so different than what was happening in my home. 166 00:14:46,340 --> 00:14:47,890 And she said, 167 00:14:47,890 --> 00:14:48,360 gosh, 168 00:14:48,360 --> 00:14:52,560 I'm really a little um nervous and watchful, 169 00:14:52,560 --> 00:14:56,110 because I have to wake her up in the middle of the night for her to eat. 170 00:14:56,120 --> 00:14:56,660 You know, 171 00:14:56,660 --> 00:15:00,210 she's already sleeping through and I'm a little nervous about, 172 00:15:00,220 --> 00:15:00,550 you know, 173 00:15:00,550 --> 00:15:02,780 her nutrition, and, of course, 174 00:15:02,790 --> 00:15:06,760 here I am not sleeping for a year. 175 00:15:07,240 --> 00:15:11,010 And another colleague said to her, 176 00:15:11,250 --> 00:15:11,690 "oh, 177 00:15:11,690 --> 00:15:13,810 what a good baby you have." 178 00:15:14,440 --> 00:15:21,250 And usually I'm very measured in my speech and I think about what I say ahead of time, 179 00:15:21,250 --> 00:15:33,860 but I felt this surge going from my toes up to my ... my voice and I blurted out, "all babies are good." 180 00:15:35,140 --> 00:15:36,560 And she said, 181 00:15:36,560 --> 00:15:37,340 "well, 182 00:15:37,360 --> 00:15:37,950 yeah, 183 00:15:37,950 --> 00:15:39,360 but you know what I mean?" 184 00:15:39,840 --> 00:15:48,370 And I realized that we attach goodness to a baby, 185 00:15:48,370 --> 00:15:49,860 that's easy. 186 00:15:50,590 --> 00:15:51,130 I said, 187 00:15:51,130 --> 00:15:51,520 "you mean, 188 00:15:51,520 --> 00:15:53,950 she's easy and that's good." 189 00:15:55,040 --> 00:15:57,020 But all babies are good. 190 00:15:57,030 --> 00:16:08,250 So I think we have to watch our emotional tone so that we make sure everyone knows that every infant has value. 191 00:16:08,260 --> 00:16:11,660 Every individual is important. 192 00:16:12,120 --> 00:16:13,060 There aren't, 193 00:16:13,070 --> 00:16:13,960 you know, 194 00:16:14,640 --> 00:16:16,990 good babies and bad babies. 195 00:16:17,440 --> 00:16:26,460 There are struggling babies and babies that are not struggling and so forth across the whole lifespan, 196 00:16:26,840 --> 00:16:35,150 that our emotional charge can sometimes make people feel less than good, less than valued. 197 00:16:36,060 --> 00:17:00,150 And so I think that really became apparent to me and I'm much more aware of protecting the emotional atmosphere when I'm speaking to someone to really protect that they understand that they are important and that we're having this tough discussion because their well being is important. 198 00:17:01,840 --> 00:17:12,020 What I started to think about is that even though I want people to be have the freedom and the space to be where they're at, 199 00:17:12,020 --> 00:17:13,920 whether they're celebrating this, 200 00:17:13,930 --> 00:17:15,600 whether they're relieved, 201 00:17:15,600 --> 00:17:16,960 whether they're struggling, 202 00:17:17,540 --> 00:17:23,120 whether they're upset about the diagnosis or the concept, 203 00:17:23,130 --> 00:17:25,450 I want to give people space, 204 00:17:25,630 --> 00:17:35,460 they don't have to react in a certain way in order to be good or in order to please me just because I'm in a different place. 205 00:17:36,840 --> 00:17:38,220 On the other hand, 206 00:17:38,230 --> 00:17:48,060 I really want to balance that freedom to feel with my own awareness of protecting the emotional atmosphere. 207 00:17:49,140 --> 00:18:09,170 There are some emotions that I really um try to protect people from during our conversations and The Big one I would say that I never feel is helpful in the conversation is shame. 208 00:18:10,240 --> 00:18:15,780 Um I just feel like that is so easy. 209 00:18:16,940 --> 00:18:29,670 Mhm uh emotionally to bring into conversations when someone is struggling that I really try to be very careful to protect what's going on from any shame. 210 00:18:30,140 --> 00:18:36,760 Um and I would also say emotions like hopelessness, 211 00:18:36,760 --> 00:18:37,620 helplessness, 212 00:18:37,620 --> 00:18:42,780 worthlessness, and it's okay for people to feel fear... 213 00:18:42,780 --> 00:18:48,380 But I do try to protect from that just global fear that doesn't leave, 214 00:18:48,390 --> 00:18:48,680 you know, 215 00:18:48,680 --> 00:18:50,360 this is not a season of fear. 216 00:18:50,360 --> 00:18:56,230 This is "I am afraid of a diagnosis in general." 217 00:18:56,640 --> 00:19:01,100 And so I try to have some protection for that. 218 00:19:02,740 --> 00:19:04,010 By protection. 219 00:19:04,020 --> 00:19:07,640 I mean that I try to really monitor my own language. 220 00:19:07,650 --> 00:19:10,300 I try to acknowledge what people are saying, 221 00:19:10,300 --> 00:19:11,770 but I do point out, 222 00:19:12,340 --> 00:19:13,110 um, 223 00:19:13,120 --> 00:19:18,270 when I feel like an emotion is really just working against their wellness, 224 00:19:18,640 --> 00:19:19,080 you know, 225 00:19:19,080 --> 00:19:23,950 it sounds like this is about shame and there is no criticism here. 226 00:19:24,440 --> 00:19:26,460 This is not a criticism. 227 00:19:26,920 --> 00:19:38,230 This is to increase your power to understand yourself to be able to get centered when you're just feeling off center. 228 00:19:39,010 --> 00:19:40,860 This is not a criticism. 229 00:19:41,740 --> 00:19:46,170 So I may say things like that to protect the atmosphere. 230 00:19:51,740 --> 00:20:00,630 I also try to explain to people if they are in a point of struggle about the topic, 231 00:20:00,640 --> 00:20:02,360 let's say I've brought it up. 232 00:20:03,440 --> 00:20:05,360 They're struggling with the topic. 233 00:20:06,950 --> 00:20:22,850 I try to explain why I bring up what feels like a difficult topic to them and my memory goes back to when my son was in preschool. 234 00:20:23,440 --> 00:20:23,770 Uh, 235 00:20:23,780 --> 00:20:33,270 it was an early intervention preschool and he had started showing at the age of three some additional um, 236 00:20:35,340 --> 00:20:37,860 characteristics that, 237 00:20:38,360 --> 00:20:38,660 you know, 238 00:20:38,660 --> 00:20:45,520 we later realized were part of the autism and I in a parent teacher meeting. 239 00:20:45,520 --> 00:20:48,360 There were two teachers in me and I said, 240 00:20:48,360 --> 00:20:51,470 have you started seeing these kinds of things for him? 241 00:20:51,470 --> 00:20:52,860 Because we're seeing that a lot. 242 00:20:53,330 --> 00:20:58,020 And I remember vividly that they both looked at each other, 243 00:20:58,020 --> 00:21:03,700 both teachers and didn't say anything and then looked at me and said, 244 00:21:03,700 --> 00:21:07,050 well we'll just start to work on that... they hadn't seen it. 245 00:21:07,940 --> 00:21:27,030 And I knew darrn well that they knew something that I didn't and that it didn't feel to them like it was okay to bring up and then I felt too afraid to push it because I'm like, 246 00:21:27,040 --> 00:21:27,530 oh, 247 00:21:27,800 --> 00:21:29,810 if this is not okay to talk about, 248 00:21:29,810 --> 00:21:31,350 do I really want to know? 249 00:21:31,840 --> 00:21:33,180 But to be honest, 250 00:21:33,190 --> 00:21:36,850 I needed to know I needed that information. 251 00:21:37,240 --> 00:21:46,050 It didn't help me to be in the dark for two more years about what we could have been really understanding better. 252 00:21:46,940 --> 00:21:51,350 Um So when I'm talking to someone in that position, 253 00:21:52,730 --> 00:21:54,560 I may say something like, 254 00:21:54,940 --> 00:21:55,680 you know, 255 00:21:55,680 --> 00:22:06,460 it's because your well being is so important that I will always bring up topics that impact your well being, 256 00:22:06,460 --> 00:22:20,270 even if they're ... they feel tough because you are important and it's important to talk about these things and I'm a person that will do that with you. 257 00:22:21,540 --> 00:22:30,390 Um So I also try to bring it to the table when it's about to be shut down again, 258 00:22:30,390 --> 00:22:34,360 tying it to their their well being, 259 00:22:34,360 --> 00:22:36,780 their worth and my value for them. 260 00:22:38,350 --> 00:22:41,730 I've also I started to think, 261 00:22:43,340 --> 00:22:44,110 you know, 262 00:22:44,120 --> 00:22:52,020 what do I want people to leave a conversation with me with? 263 00:22:52,020 --> 00:22:53,640 What do I want him to leave with? 264 00:22:53,700 --> 00:22:54,040 Well, 265 00:22:54,050 --> 00:22:57,080 I'd like them of course to leave with some information. 266 00:22:57,080 --> 00:23:09,860 But even more so I realize that what is most impactful is I want them to leave knowing that they are valued. 267 00:23:10,440 --> 00:23:12,990 I want them to leave without fear. 268 00:23:13,540 --> 00:23:18,360 I want them to feel empowered and courageous and supported. 269 00:23:19,540 --> 00:23:24,670 So when I am interacting with them about the topic, 270 00:23:25,240 --> 00:23:28,770 am I providing data and information of course, 271 00:23:30,040 --> 00:23:54,770 but I'm very watchful that ultimately my goal is to have them sit with me in this experience and to be able to leave with a sense of freedom and being supported and for them to leave and say, 272 00:23:55,940 --> 00:24:03,450 I feel like I was seen because that's really important. 273 00:24:05,540 --> 00:24:09,610 I want to share a personal experience, 274 00:24:10,160 --> 00:24:15,950 just two to round out this episode. 275 00:24:17,040 --> 00:24:19,050 And um, 276 00:24:21,540 --> 00:24:35,850 I got to the point where I did want to process this with my son's pediatrician When he was about four. 277 00:24:36,340 --> 00:24:44,050 And I came to that on my own by research and watching him. 278 00:24:44,050 --> 00:24:47,680 And um I decided, 279 00:24:47,830 --> 00:24:48,290 you know, 280 00:24:48,290 --> 00:24:50,250 it's time to talk about this. 281 00:24:50,570 --> 00:25:11,550 And my reluctance to talk about it with him was because I know that even physicians get emotionally charged about the topic and I did not want to get into any kind of push or pull and I did not know his opinion. 282 00:25:11,560 --> 00:25:19,450 He was our third pediatrician to be honest and I just did not know him that well. 283 00:25:20,330 --> 00:25:30,670 And because I knew it might be a topic that might get shut down or there might be an emotional charge. 284 00:25:32,340 --> 00:25:35,220 I practiced what I was going to say ahead of time. 285 00:25:35,230 --> 00:25:36,780 Like a lot. 286 00:25:36,790 --> 00:25:39,510 You know how you feel like I'm going in. 287 00:25:39,520 --> 00:25:41,550 I have this one appointment. 288 00:25:41,560 --> 00:25:43,110 I don't know this person, 289 00:25:43,120 --> 00:25:47,760 but I need to make sure I'm thinking clearly enough to get these things across. 290 00:25:48,640 --> 00:25:54,580 So I practiced and I wrote things down and the appointment got rescheduled three times. 291 00:25:54,590 --> 00:25:57,360 So it's one of those things and you're waiting. 292 00:25:57,740 --> 00:26:02,610 And I went to the appointment. 293 00:26:02,610 --> 00:26:04,760 So I was kind of armed with, 294 00:26:05,540 --> 00:26:08,580 you know what I wanted to say? 295 00:26:08,580 --> 00:26:13,340 But I was very watchful about how this would go. 296 00:26:14,120 --> 00:26:24,600 And I also had received so much advice for so long without really getting assistance. 297 00:26:24,610 --> 00:26:28,540 And I didn't want that to be the case either. 298 00:26:28,790 --> 00:26:32,460 I really wanted to talk. 299 00:26:32,470 --> 00:26:41,860 I wanted someone to talk with me about a difficult thing and a complex thing and I wanted um something substantive to do next. 300 00:26:43,040 --> 00:26:46,370 So we discussed a lot of things. 301 00:26:46,380 --> 00:26:52,850 Um He referred us to the autism diagnostic clinic at our local easter seals. 302 00:26:53,340 --> 00:26:55,990 Uh and then that wait list started of course. 303 00:26:56,540 --> 00:26:59,520 Um So did he give me information? 304 00:26:59,520 --> 00:27:00,310 Yes. 305 00:27:00,320 --> 00:27:01,960 Did he give me a plan? 306 00:27:01,960 --> 00:27:02,940 Absolutely. 307 00:27:02,950 --> 00:27:05,960 But when I left that office, 308 00:27:06,640 --> 00:27:11,210 what was life changing for me ... was mostly something else. 309 00:27:12,440 --> 00:27:20,800 And what it was was that at the end of our talk... and I still get emotional about this. 310 00:27:20,850 --> 00:27:22,390 At the end of our talk, 311 00:27:22,390 --> 00:27:24,110 he looked at me and he said, 312 00:27:24,110 --> 00:27:24,590 "I hope, 313 00:27:24,590 --> 00:27:33,710 you know you're a good mom"... and I had practiced what to say in this session. 314 00:27:33,710 --> 00:27:35,160 But I, 315 00:27:35,300 --> 00:27:36,600 my mouth hung open. 316 00:27:36,600 --> 00:27:57,550 I was literally speechless and I realized in that moment that nobody had ever said that to me and I knew darn well that if I asked my friends or my family, 317 00:27:57,550 --> 00:27:58,800 do you think I'm a good mom? 318 00:27:58,800 --> 00:27:59,320 They would say, 319 00:27:59,320 --> 00:28:01,300 well of course you are. 320 00:28:01,330 --> 00:28:02,860 That goes without saying. 321 00:28:04,440 --> 00:28:06,350 But I realized it doesn't, 322 00:28:06,590 --> 00:28:19,200 it doesn't go without saying because we get all these messages that we're doing something wrong or our struggle would be gone if we knew what we were doing. 323 00:28:21,540 --> 00:28:23,550 Nobody had ever said, 324 00:28:24,740 --> 00:28:25,190 I hope, 325 00:28:25,190 --> 00:28:25,450 you know, 326 00:28:25,450 --> 00:28:36,770 you're a good mom that has never left me. 327 00:28:37,240 --> 00:28:43,700 It took no skill to say he didn't have to be an autism expert and he was not. 328 00:28:44,840 --> 00:28:54,790 But when I left the emotional atmosphere had been protected and I left feeling seen and heard and valued. 329 00:28:55,840 --> 00:29:07,160 And that gave me the courage to keep going to talk about something that is complex and emotionally charged. 330 00:29:07,840 --> 00:29:26,480 And sometimes what we need to make people understand is that we see the heart that they have for their kids or we see all the detective work they've done to try to figure themselves out that we see their value. 331 00:29:26,480 --> 00:29:27,560 We see them. 332 00:29:28,640 --> 00:29:29,660 We honor them. 333 00:29:29,660 --> 00:29:31,060 We respect them. 334 00:29:32,440 --> 00:29:32,970 Um, 335 00:29:32,980 --> 00:29:35,600 and that's something we think goes without saying, 336 00:29:35,600 --> 00:29:36,890 but it really doesn't. 337 00:29:36,900 --> 00:29:45,910 And so that's what I mean by navigating emotional atmospheres and protecting emotional atmospheres. 338 00:29:46,600 --> 00:30:00,420 That sometimes the one thing we can do to open up a discussion where people feel free and safe enough to talk about something complex is to say, 339 00:30:00,420 --> 00:30:05,270 I see you and you're important and I'm glad you're here. 340 00:30:05,460 --> 00:30:06,560 And let's talk about it. 341 00:30:10,240 --> 00:30:15,330 I hope you'll join me next time for our final episode in the series, 342 00:30:15,340 --> 00:30:22,510 which is about talking about autism to others when you see autistic characteristics in them. 343 00:30:22,510 --> 00:30:25,240 But but they're not expecting this discussion. 344 00:30:25,240 --> 00:30:25,860 This is, 345 00:30:26,040 --> 00:30:26,380 you know, 346 00:30:26,380 --> 00:30:27,720 something you want to bring up. 347 00:30:27,730 --> 00:30:30,660 But should I bring it up and how could I bring it up? 348 00:30:30,940 --> 00:30:40,860 Um That will be our next discussion and I will see you then.

Join Dr. Regan for this first episode of the new series "Talking About Autism." This episode focuses on talking about autism when you are on a journey toward diagnosis and after you have received a diagnosis.  New Course for Clinicians - Interventions in Autism: Helping Clients Stay Centered, Connect with Others, and Engage in Life New Course for Clinicians: ASD Differential Diagnoses and Associated Characteristics Dr. Regan's Resources Book: Understanding Autism in Adults and Aging Adults, 2nd ed Audiobook Book: Understanding Autistic Behaviors Autism in the Adult website Resources for Clinicians Read the transcript:  1 00:00:03,540 --> 00:00:07,840 Hello and welcome to this episode of Autism in the Adult. 2 00:00:07,880 --> 00:00:09,020 I am your host, 3 00:00:09,020 --> 00:00:10,510 Dr Theresa Regan. 4 00:00:10,520 --> 00:00:12,600 I'm a neuropsychologist. 5 00:00:12,620 --> 00:00:15,060 I am a certified autism specialist, 6 00:00:15,440 --> 00:00:23,750 the director of an autism diagnostic clinic for adults in central Illinois, and the mother of a teen and the spectrum. 7 00:00:24,550 --> 00:00:27,630 I am starting a new series of episodes today. 8 00:00:28,040 --> 00:00:33,040 I think this may end up being a 3-4 part series. 9 00:00:33,040 --> 00:00:34,330 We'll see how it goes. 10 00:00:34,340 --> 00:00:40,060 Um and basically the series is going to be called "Talking About Autism." 11 00:00:40,440 --> 00:00:50,490 And this was a listener request... from multiple listeners that have emailed about "How do I talk about this to other people, 12 00:00:50,490 --> 00:00:52,570 whether that's my own diagnosis, 13 00:00:52,570 --> 00:00:56,720 whether that's talking to people that I think may be on the spectrum, 14 00:00:56,720 --> 00:01:07,320 but they haven't been thinking in that direction... and how do I navigate all the emotion that sometimes comes with these kinds of discussions?" 15 00:01:07,320 --> 00:01:12,460 So we're going to take some time to sort through some of those topics. 16 00:01:13,340 --> 00:01:22,680 I believe that this topic is really important, and that's why I have set aside to do a series of episodes about the topic. 17 00:01:22,690 --> 00:01:31,780 I also feel like this is probably one of the most challenging episodes that I've put my mind to here. 18 00:01:31,790 --> 00:01:59,210 And that is because in some ways it's a lot easier to present some research and a list of facts and definitions of terms than to talk about these concepts and experiences and to wrap words around things that are perhaps more personal or experiential is a little more challenging, but worth it I think... 19 00:01:59,210 --> 00:02:00,260 but challenging. 20 00:02:00,270 --> 00:02:05,960 And one of the challenges is probably to make some organization of it. 22 00:02:06,750 --> 00:02:11,650 ... So there's some cohesion in what we're talking about in each episode. 23 00:02:12,140 --> 00:02:13,810 So in this first episode, 24 00:02:13,810 --> 00:02:22,700 I'm going to cover the topic of talking about your own autism diagnosis to other people, 25 00:02:22,700 --> 00:02:25,060 and I'm going to cover two things. 26 00:02:25,060 --> 00:02:37,560 One is if you're an individual who's thinking about starting a journey toward evaluation, and you're talking to people about your desire to do this, 27 00:02:37,940 --> 00:02:38,340 um, 28 00:02:38,340 --> 00:02:45,270 some of what we review will have to do with this kind of process ... this starting of that journey. 29 00:02:45,280 --> 00:02:46,590 And also, 30 00:02:46,590 --> 00:02:50,800 then we'll finish by talking about once you have a diagnosis, 31 00:02:50,810 --> 00:02:51,930 um, 32 00:02:51,940 --> 00:02:54,270 who do you talk to about it? 33 00:02:54,280 --> 00:02:55,960 How do you bring it up? 34 00:02:56,340 --> 00:02:56,890 Um, 35 00:02:56,900 --> 00:03:00,750 how does that go after you have a diagnosis? 36 00:03:01,140 --> 00:03:01,660 Um, 37 00:03:01,660 --> 00:03:13,960 so we're going to jump in first with that process that perhaps you're someone who's been thinking about yourself or been thinking about, 38 00:03:13,970 --> 00:03:14,870 um, 39 00:03:14,880 --> 00:03:16,890 perhaps your loved one, 40 00:03:16,890 --> 00:03:28,020 Maybe your partner has been thinking about this and wants you to join them in this journey or you have a child or adolescent that you think may be on the spectrum. 41 00:03:28,020 --> 00:03:28,360 And, 42 00:03:28,370 --> 00:03:35,550 and this is just the beginning of a quest to figure out more information. 43 00:03:36,840 --> 00:03:43,910 One of the really unusual things I think about autism as a diagnosis is that for some reason, 44 00:03:43,910 --> 00:04:00,060 and I don't really understand why, everyone really seems to have an opinion about this topic as far as whether you actually are or are not on the spectrum. 45 00:04:01,140 --> 00:04:03,120 And it's, 46 00:04:03,130 --> 00:04:03,780 again, 47 00:04:03,780 --> 00:04:09,280 mystifying to me because it doesn't seem to be based on any professional qualifications. 48 00:04:09,740 --> 00:04:10,330 Um, 49 00:04:10,340 --> 00:04:10,770 you know, 50 00:04:10,770 --> 00:04:17,750 I think someone that you see at the grocery store seems just as adamant about that as your grandmother, 51 00:04:17,750 --> 00:04:19,390 who's just as adamant, 52 00:04:19,400 --> 00:04:21,860 um as your therapist and so forth. 53 00:04:22,540 --> 00:04:33,460 Um it's mystifying in the sense that if someone told me they had a cardiac uh difference that was causing some arrhythmia or whatever, 54 00:04:33,840 --> 00:04:36,020 I would never think to say no, 55 00:04:36,020 --> 00:04:37,180 you don't. 56 00:04:37,320 --> 00:04:39,490 I'm not a cardiologist. 57 00:04:39,500 --> 00:04:42,360 I don't know if you do or not, 58 00:04:42,940 --> 00:04:44,640 and um, 59 00:04:44,650 --> 00:04:50,840 that just doesn't carry over to this neuro behavioral developmental condition. 60 00:04:50,840 --> 00:04:51,260 So, 61 00:04:52,340 --> 00:05:06,610 autism is a physical, neurologic state where the genetic code and the process of development of the brain has produced this less than typical neurology. 62 00:05:06,610 --> 00:05:10,610 So 2% of people  63 00:05:10,620 --> 00:05:17,250 in our population, and that is a percentage that's pretty stable across age groups, 64 00:05:17,250 --> 00:05:18,250 across country, 65 00:05:18,250 --> 00:05:24,220 across research study ... that 2% of people will present with this neurology. 66 00:05:24,220 --> 00:05:26,650 And so it's not very common. 67 00:05:27,340 --> 00:05:28,230 Um, 68 00:05:28,240 --> 00:05:34,130 and yet everyone seems to feel like they could recognize it... and I'm not, 69 00:05:34,140 --> 00:05:35,770 I'm not sure where that comes from, 70 00:05:35,770 --> 00:05:48,970 but that will probably be something you encounter if you say "I've been wondering if I'm on the autism spectrum" or "I've been wondering if my child is on the autism spectrum." 71 00:05:48,970 --> 00:05:55,830 And you'll probably get some immediate responses from people that that is not the case. 72 00:05:55,830 --> 00:05:57,950 And that could range from, 73 00:05:58,340 --> 00:05:58,790 you know, 74 00:05:58,790 --> 00:06:00,860 the physician that you see. 75 00:06:00,860 --> 00:06:02,910 It could be a therapist. 76 00:06:02,910 --> 00:06:07,250 It could be any range of people. 77 00:06:09,040 --> 00:06:20,860 The reason that I bring up this type of encounter is that I think it's often not very helpful because it's non specific. 78 00:06:21,440 --> 00:06:27,290 Um there's often not a reason given and it's not really based in data, 79 00:06:27,290 --> 00:06:38,160 it's kind of based on this general gut feeling or what people expect autism to look like in their neighborhood or their family or their classroom or whatever. 80 00:06:38,640 --> 00:06:39,110 Um, 81 00:06:39,120 --> 00:06:42,260 but it's not really based on substance. 82 00:06:42,840 --> 00:06:54,860 And one of the ways that I have found to kind of defuse that or at least ask for some substance is to say in response to that, 83 00:06:55,440 --> 00:06:55,860 "Oh, 84 00:06:55,860 --> 00:06:56,390 okay. 85 00:06:56,390 --> 00:06:59,410 What criteria don't you think I meet?" 86 00:07:01,040 --> 00:07:04,320 And whenever I've said that, 87 00:07:04,320 --> 00:07:13,660 I've never had anyone who knew the criteria that actually were responding to that or giving this input that autism is incorrect. 88 00:07:14,140 --> 00:07:15,760 Um so again, 89 00:07:16,440 --> 00:07:20,790 unusual that people feel that strongly about it, 90 00:07:21,240 --> 00:07:22,160 um, 91 00:07:22,540 --> 00:07:25,140 and will produce that, 92 00:07:25,150 --> 00:07:25,800 um, 93 00:07:26,040 --> 00:07:27,360 that opinion. 94 00:07:27,740 --> 00:07:33,900 But you can kind of diffuse that if you ask them for more specific data, 95 00:07:33,910 --> 00:07:35,770 more specific information, 96 00:07:35,780 --> 00:07:36,500 um, 97 00:07:36,500 --> 00:07:39,680 you can kind of point out ... and sometimes it's been interesting. 98 00:07:39,680 --> 00:07:40,290 So, 99 00:07:40,300 --> 00:07:41,150 you know, 100 00:07:41,150 --> 00:07:45,240 one person might say to me well I'm a counselor and I'll say, 101 00:07:45,240 --> 00:07:45,480 yeah, 102 00:07:45,480 --> 00:07:47,940 I know... a lot of people don't know the criteria though. 103 00:07:47,940 --> 00:07:51,190 So what criteria don't you think this person meets? 104 00:07:51,640 --> 00:07:52,920 And then she said, 105 00:07:52,920 --> 00:07:53,070 well, 106 00:07:53,070 --> 00:07:55,060 I guess I don't really know the criteria. 107 00:07:55,840 --> 00:07:58,060 So it just helps diffuse that. 108 00:07:58,070 --> 00:07:59,760 And I wouldn't recommend, 109 00:08:00,340 --> 00:08:00,820 you know, 110 00:08:00,820 --> 00:08:03,580 going in guns blazing or anything, 111 00:08:03,660 --> 00:08:05,680 but just in a very matter of fact, 112 00:08:05,690 --> 00:08:10,990 calm way that you'd like their input if it's based in the data, 113 00:08:10,990 --> 00:08:15,550 what kind of observations are they using to say that, 114 00:08:17,440 --> 00:08:17,880 you know, 115 00:08:17,880 --> 00:08:31,410 Another comment that I find non specific and I find this comment to be kind of dismissing 116 00:08:31,410 --> 00:08:44,410 I guess of someone's journey that they're taking toward an evaluation and what can happen unfortunately is the person will say, 117 00:08:44,410 --> 00:08:44,630 "Well, 118 00:08:44,630 --> 00:08:46,120 why do you think that?" 119 00:08:46,130 --> 00:08:55,960 And you'll start to share some of your thoughts and experiences and then you're a bit trapped because they may say, 120 00:08:56,340 --> 00:08:56,780 "Oh yeah, 121 00:08:56,780 --> 00:08:57,760 but I do that too. 122 00:08:57,760 --> 00:08:59,170 And I'm not autistic, 123 00:08:59,180 --> 00:09:00,560 everybody does that." 124 00:09:01,240 --> 00:09:10,350 Um and it just doesn't leave you in any better place than you were. 125 00:09:10,360 --> 00:09:10,680 Again, 126 00:09:10,680 --> 00:09:12,760 it doesn't add anything of substance. 127 00:09:12,760 --> 00:09:14,350 It doesn't clear anything up. 128 00:09:14,840 --> 00:09:23,260 Um And so one thing I find helpful to mention in this kind of dynamic would be to say, 129 00:09:23,840 --> 00:09:24,610 "Well, 130 00:09:24,620 --> 00:09:42,960 that would be like saying that because we all forget things that Alzheimer's dementia isn't really impactful to people, and something may be impactful to an individual because of how frequently it happens or how much distress it causes. 131 00:09:43,340 --> 00:09:44,370 Um So, 132 00:09:44,380 --> 00:09:52,200 so that's the thought process I'm using about my own experiences in the end. 133 00:09:52,200 --> 00:09:56,560 I would never have your goal be ah, 134 00:09:56,940 --> 00:10:00,390 to convince everyone that you come in contact with, 135 00:10:00,390 --> 00:10:02,690 that the journey is relevant. 136 00:10:02,700 --> 00:10:18,650 I think that autism is just such a misunderstood concept that you're going to have people who just are not in the same place that you are, and to go back and forth feeling like your role is to convince people, 137 00:10:18,660 --> 00:10:19,460 um, 138 00:10:19,460 --> 00:10:21,060 is probably not, 139 00:10:21,640 --> 00:10:22,270 um, 140 00:10:22,280 --> 00:10:24,660 not a role that really brings fruit. 141 00:10:25,220 --> 00:10:33,800 And so I would consider letting go that agenda if that's your goal, 142 00:10:33,860 --> 00:10:36,260 that you'll be able to convince everybody. 143 00:10:39,440 --> 00:10:40,950 And interestingly, 144 00:10:40,950 --> 00:10:44,680 as with other complex life situations, 145 00:10:44,680 --> 00:10:53,100 what I find personally is that sometimes the people I expect to be there for me in this situation, 146 00:10:53,110 --> 00:10:57,740 whether that's a celebration or whether I'm grieving about something, 147 00:10:57,750 --> 00:10:58,690 um, 148 00:10:58,700 --> 00:10:59,770 a wedding, 149 00:10:59,770 --> 00:11:00,900 a funeral, 150 00:11:00,910 --> 00:11:01,640 uh, 151 00:11:01,650 --> 00:11:02,630 a promotion, 152 00:11:02,630 --> 00:11:06,240 a move ... sometimes I expect, 153 00:11:06,250 --> 00:11:06,930 you know, 154 00:11:06,930 --> 00:11:17,150 these closest people to be really with me and a lot of times that's not necessarily the case and we may like it to be that way, 155 00:11:17,540 --> 00:11:23,440 but in life I just find that there will always be people that step up that surprise you. 156 00:11:23,450 --> 00:11:23,690 Like, 157 00:11:23,690 --> 00:11:24,150 wow, 158 00:11:24,150 --> 00:11:26,500 I wouldn't have expected you to be the one, 159 00:11:26,510 --> 00:11:27,320 you know, 160 00:11:27,320 --> 00:11:30,190 to kind of step up and meet me in this place. 161 00:11:30,200 --> 00:11:36,860 But I did expect this other person to be able to support me and they're really not able to do that. 162 00:11:37,140 --> 00:11:47,570 So sometimes the journey does involve letting go of some expectations and giving other people the freedom to be in a different place, 163 00:11:47,580 --> 00:11:56,350 allowing yourself to grieve that you're not on the same journey that everyone else is ... that other people don't appreciate that part of your journey. 164 00:11:57,040 --> 00:12:05,960 Um but not getting into the trap of trying to convince people who just aren't really there. 165 00:12:08,640 --> 00:12:23,850 Another comment that I feel is dismissive and very general and non substantive is a comment people make ... I suppose to be um supportive, 166 00:12:24,340 --> 00:12:29,330 but it dismisses some of the complexity of the journey, 167 00:12:29,340 --> 00:12:30,250 I think. 168 00:12:30,260 --> 00:12:32,400 And that is the comment I hear a lot, 169 00:12:32,400 --> 00:12:32,980 which is, 170 00:12:32,980 --> 00:12:33,410 "Well, 171 00:12:33,420 --> 00:12:36,160 I guess everyone's a little autistic these days. 172 00:12:37,040 --> 00:12:39,250 Apparently we're all autistic." 173 00:12:39,260 --> 00:12:39,580 You know, 174 00:12:39,580 --> 00:12:41,260 that kind of comment. 175 00:12:41,940 --> 00:12:49,050 Um actually 2% of individuals meet full criteria for the autism spectrum. 176 00:12:49,440 --> 00:12:50,100 Um, 177 00:12:50,110 --> 00:12:57,360 so it's not this popular fad that everyone's getting diagnosed with. 178 00:12:57,840 --> 00:13:06,360 Um I think there's a lot of emphasis on diagnosis now because we're realizing how many people have been missed or misdiagnosed. 179 00:13:06,840 --> 00:13:07,280 Um, 180 00:13:07,290 --> 00:13:09,490 but everyone's not autistic. 181 00:13:09,500 --> 00:13:13,130 Uh this is an unusual neurologic pattern. 182 00:13:13,140 --> 00:13:14,490 It's unique. 183 00:13:14,500 --> 00:13:21,230 Uh it's not that common and it's really worth paying attention to and realizing, 184 00:13:21,240 --> 00:13:21,770 you know, 185 00:13:21,770 --> 00:13:23,250 when that's present. 186 00:13:26,000 --> 00:13:38,960 Some people will advise that you don't pursue the journey of evaluation based on their premise that the diagnosis won't make a difference anyway. 187 00:13:39,440 --> 00:13:42,810 And I've heard that from physicians, 188 00:13:42,810 --> 00:13:45,760 from psychologists. psychiatrists, teachers, 189 00:13:46,240 --> 00:13:46,770 um, 190 00:13:46,780 --> 00:13:49,930 all kinds of people. 191 00:13:49,930 --> 00:13:56,050 So I don't think it's really specific to any group of people or generation, 192 00:13:56,050 --> 00:14:11,160 but I think it's just a revelation that in our culture... in our communities... we're really not to the point where people understand what a difference it does make and what a difference it should make. 193 00:14:11,540 --> 00:14:15,350 So um if someone says that ... that probably, 194 00:14:15,740 --> 00:14:26,030 well I would say it does reveal that they don't understand the neurology of autism well enough that they can really comment on your situation. 195 00:14:26,040 --> 00:14:35,960 And again it may be your psychiatrist who doesn't or ... and it's not um a criticism of any one person. 196 00:14:36,040 --> 00:14:44,630 I'm just commenting I think on the state of our community as far as our awareness of what the neurology looks like, 197 00:14:44,630 --> 00:14:54,150 what impact it has on you or people around you and all the things that do make a difference about knowing that. 198 00:14:54,640 --> 00:14:59,080 Um So it should direct our expectations, 199 00:14:59,080 --> 00:14:59,860 our goals, 200 00:14:59,860 --> 00:15:03,100 our understanding of the why of behavioral patterns, 201 00:15:03,110 --> 00:15:05,020 how to get the best outcomes, 202 00:15:05,020 --> 00:15:06,600 how to support each other. 203 00:15:06,610 --> 00:15:16,310 Um because at a very basic level when you're going on a journey to um have an evaluation for autism,   204 00:15:16,310 --> 00:15:29,450 you're trying to figure out if your behavioral patterns in certain areas reflect neurology or whether they reflect more traditional mental health issues. 205 00:15:29,450 --> 00:15:39,460 And I know that those two categories are not clean cut categories but for the purpose of this basic discussion, 206 00:15:39,470 --> 00:15:44,340 I'm going to point out those 2 categories. 207 00:15:44,340 --> 00:15:55,380 So I'm going to give an analogy that I hope will demonstrate why it does make a difference to understand if parts of a behavioral pattern have a neurologic base. 208 00:15:55,390 --> 00:16:03,410 So let's consider that a psychologist has two clients coming in that day and they both have the same concern. 209 00:16:03,440 --> 00:16:08,830 They both have a memory concern, and the psychologist could think, 210 00:16:08,830 --> 00:16:11,040 "Well it's the same concern. 211 00:16:11,040 --> 00:16:22,460 So I'm just going to use the same treatment for both patients since we're really just wanting to improve memory regardless of the reason for the memory difficulty." 212 00:16:23,340 --> 00:16:23,980 Well, 213 00:16:23,990 --> 00:16:24,480 let's say, 214 00:16:24,480 --> 00:16:27,400 another psychologist has the same thing. 215 00:16:27,400 --> 00:16:29,920 They have to people coming in but they decide, 216 00:16:29,930 --> 00:16:30,470 you know, 217 00:16:30,480 --> 00:16:33,700 it really does matter what the reason is. 218 00:16:33,710 --> 00:16:39,640 And so I'm going to do an assessment to see -- why are these people having memory difficulties? 219 00:16:39,650 --> 00:16:42,010 And the first client of the day, 220 00:16:42,010 --> 00:16:50,570 the psychologist does the assessment and they see a cognitive pattern that's very classic for an alzheimer's dementia, 221 00:16:51,140 --> 00:16:54,390 which means that the hippocampus is not functioning well, 222 00:16:54,400 --> 00:16:56,670 there's a disease process here. 223 00:16:56,680 --> 00:17:03,650 It really looks like it's going to be degenerative, and the memory loss is very based in neurology. 224 00:17:05,340 --> 00:17:07,900 And the second client who comes in, 225 00:17:07,910 --> 00:17:22,860 the psychologist does the assessment and realizes after the evaluation that their memory loss is due to traumatic experiences... that they've had so much trauma in their life that they're dissociating, 226 00:17:23,140 --> 00:17:41,960 that they are shutting down their awareness in order to just go on autopilot and that's why they're losing chunks of their day and they forget parts of their childhood and their mind is just not online all of the time because it's trying to protect itself from all these strong emotions. 227 00:17:44,240 --> 00:18:03,720 So at a basic level the treatment needs to be different ... the conceptualization needs to be different, and the support that we offer people needs to be different - based on whether there's been this more mental health path to these symptoms or whether there is some neurologic base. 228 00:18:04,140 --> 00:18:17,040 So I'm not going to recommend that the Alzheimer's patient come into psychodynamic therapy every day to work on trauma work so that their memory will improve. 229 00:18:17,050 --> 00:18:21,970 I need to understand what the base of the concern is. 230 00:18:21,970 --> 00:18:25,160 So I understand what's likely to be helpful, 231 00:18:25,540 --> 00:18:31,620 but I very well may recommend that the second client engage in trauma work, 232 00:18:31,620 --> 00:18:32,860 whatever that looks like. 233 00:18:33,340 --> 00:18:48,390 Uh and that should help this pattern of dissociating and help her be more aware and present psychologically in the moment and cut down on that loss of memory. Now, 234 00:18:48,390 --> 00:18:51,240 certainly Alzheimer's and autism are not the same, 235 00:18:51,240 --> 00:18:51,710 right? 236 00:18:51,720 --> 00:18:57,160 Autism is developmental and Alzheimer's is acquired. 237 00:18:57,840 --> 00:19:00,080 Alzheimer's is degenerative, 238 00:19:00,090 --> 00:19:01,220 it gets worse. 239 00:19:01,230 --> 00:19:07,370 Um and autism is based on how the brain was wired during development. 240 00:19:07,370 --> 00:19:10,770 It's not a degenerative process, 241 00:19:11,640 --> 00:19:35,460 but you can see this general concept of figuring out if there's a part of something going on that's neurologic versus more traditional mental health issue, and so I feel ... I feel like that in itself can be a really important part of the journey toward figuring out if autism is present. 242 00:19:35,940 --> 00:19:41,840 So let me offer one additional example in this ... , 243 00:19:41,840 --> 00:20:04,170 I'm going to take little Johnny who's in kindergarten, and mother comes to talk with the teacher and gets to hear that "Unfortunately, Johnny is really struggling with his color recognition, and all of his peers are really taking off on recognizing colors and naming them and organizing them into hues and patterns. 244 00:20:04,170 --> 00:20:09,200 And boy, little Johnny is not up to speed in that area. 245 00:20:09,210 --> 00:20:15,720 And so what the teacher recommends is that she's going to repeat, for Johnny, 246 00:20:15,720 --> 00:20:24,760 why it's important to work hard to learn his colors because it does impact various parts of his life. 247 00:20:25,140 --> 00:20:29,990 So explaining ... a lot of explanation of why this is important. 248 00:20:30,000 --> 00:20:31,950 She's gonna ask Johnny if ... 249 00:20:31,960 --> 00:20:42,450 if he agrees that this is an important thing, and he says yes. And so she's going to add extra homework, extra tutoring about color recognition. 250 00:20:42,540 --> 00:20:54,290 She's going to ask the parents to give extra work and help him at home and maybe set up um a prize versus consequences kind of thing. 251 00:20:54,290 --> 00:20:59,370 Like if you can advance in this area up to your peers, 252 00:20:59,380 --> 00:21:01,600 you can get this extra present. 253 00:21:01,600 --> 00:21:08,060 But if you can't, then you can't go on the trip at the end of the year with your class. 254 00:21:08,740 --> 00:21:12,060 So they've set this whole thing up, and every year, 255 00:21:12,060 --> 00:21:13,590 the same thing is repeated. 256 00:21:13,590 --> 00:21:19,670 Boy, Johnny needs to work harder on his color recognition. By middle school, 257 00:21:19,670 --> 00:21:23,120 Johnny has this learned hopelessness... 258 00:21:23,120 --> 00:21:25,980 That no matter how hard he tries, 259 00:21:25,990 --> 00:21:30,890 he's always falling short of people's expectations in this area. 260 00:21:30,890 --> 00:21:36,260 And instead of being shamed and embarrassed about it anymore, 261 00:21:36,260 --> 00:21:37,330 he starts to say, 262 00:21:37,330 --> 00:21:38,110 "You know what? 263 00:21:38,120 --> 00:21:40,400 It's because I don't even care about colors, 264 00:21:40,480 --> 00:21:42,170 I don't care about this." 265 00:21:42,540 --> 00:21:50,720 And there starts to be this really difficult dynamic now between Johnny and his parents and his teachers, 266 00:21:50,730 --> 00:21:52,050 a lot of strain, 267 00:21:52,050 --> 00:21:56,290 some acting out. And all of a sudden, in middle school, 268 00:21:56,290 --> 00:22:02,030 someone thinks to see if Johnny is colorblind. Lo and behold, 269 00:22:02,040 --> 00:22:08,760 he has color blindness, and all this time we've been telling him to work harder. 270 00:22:10,440 --> 00:22:15,030 We've been lecturing him about why it's important to do better. 271 00:22:15,140 --> 00:22:18,060 We've been asking him if he agrees that it's important. 272 00:22:18,740 --> 00:22:19,240 Um, 273 00:22:19,240 --> 00:22:31,960 We've been tutoring him, all to no avail, and here we were asking him to do something he's not capable of doing at the same level as his peers. 274 00:22:32,540 --> 00:22:37,930 And that is a difficulty because we've really uh, 275 00:22:37,940 --> 00:22:39,870 set up this expectation. 276 00:22:39,870 --> 00:22:44,950 He has this learned hopelessness that he just can't meet people's expectations. 277 00:22:44,960 --> 00:23:01,570 The relationship between him and the teachers and the parents has become very strained and it could have been avoided if we understood that there's really a physical limitation that his eyes just can't process that information. 278 00:23:01,570 --> 00:23:07,190 So asking him to work harder is not going to be something that is helpful. 279 00:23:07,190 --> 00:23:09,350 It's not going to bring about a better outcome. 280 00:23:09,620 --> 00:23:11,800 In fact it's making things worse. 281 00:23:12,640 --> 00:23:18,700 So now let's say you have gone on this journey and you do have a diagnosis. 282 00:23:19,740 --> 00:23:23,360 Um One of the questions that people then ask is well, 283 00:23:25,140 --> 00:23:25,740 you know, 284 00:23:25,740 --> 00:23:29,150 I don't ... I don't know who I want to talk to about this. 285 00:23:29,150 --> 00:23:30,860 Do I have to tell everybody? 286 00:23:31,240 --> 00:23:40,670 Um In fact some people may say I don't even want to go on that journey toward evaluation ... because my partner wouldn't understand that diagnosis. 287 00:23:40,680 --> 00:23:48,190 And in reality... this is part of your medical record, 288 00:23:48,190 --> 00:23:59,370 part of your um diagnostic history that you do not have to share with people outside of your medical care. 289 00:23:59,370 --> 00:24:02,350 So if you have a partner, 290 00:24:02,740 --> 00:24:05,770 you do not have to reveal that to them. 291 00:24:06,340 --> 00:24:09,400 If you don't want to tell your family, 292 00:24:09,400 --> 00:24:12,100 if you don't want to tell your teachers, 293 00:24:12,110 --> 00:24:17,690 you have discretion about who you reveal too. 294 00:24:17,700 --> 00:24:23,560 And I am speaking to you about the interpersonal aspects of revealing. 295 00:24:24,040 --> 00:24:34,810 Um I'm not giving any legal or policy advice on anything about revealing in certain situations. 296 00:24:34,820 --> 00:24:36,990 But interpersonally, 297 00:24:37,000 --> 00:24:43,060 you don't have to reveal everything about yourself to every person in your life. 298 00:24:44,640 --> 00:24:52,460 There may be reasons that you may decide to discuss your diagnosis with someone or some group of people. 299 00:24:52,940 --> 00:25:07,260 And one of the reasons may be that you may want to explain who you are and how you're wired and what your needs are to other people and that may make life just easier with them. 300 00:25:08,280 --> 00:25:15,540 And you can make the explanation nonspecific or specific. 301 00:25:15,540 --> 00:25:20,390 And what I mean by that is you can use the word autism or not use the word autism, 302 00:25:20,940 --> 00:25:23,620 but in some instances you might want to say, 303 00:25:23,620 --> 00:25:23,920 you know, 304 00:25:23,920 --> 00:25:27,390 I've really learned that my system needs X, 305 00:25:27,390 --> 00:25:29,900 y and Z to feel calm. 306 00:25:29,900 --> 00:25:32,720 So I'm gonna go take a break now, 307 00:25:32,720 --> 00:25:34,060 if that's okay with you, 308 00:25:34,540 --> 00:25:36,660 or you might want to say, 309 00:25:36,670 --> 00:25:37,380 you know, 310 00:25:37,380 --> 00:25:41,770 I've learned that I kind of miss sometimes what my friends need. 311 00:25:41,770 --> 00:25:42,730 And so, 312 00:25:42,740 --> 00:25:43,250 you know, 313 00:25:43,250 --> 00:25:45,700 if you said something and it's just gone over my head, 314 00:25:45,700 --> 00:25:47,370 please tell me again, 315 00:25:47,370 --> 00:25:50,170 I really don't want to miss what your needs are. 316 00:25:50,540 --> 00:25:51,020 Um, 317 00:25:51,030 --> 00:25:58,070 so that's kind of a nonspecific way without using the word autism, 318 00:25:58,070 --> 00:26:05,760 that you can share what you've learned about yourself in that context and that could make your relationships, 319 00:26:06,340 --> 00:26:07,120 um, 320 00:26:07,130 --> 00:26:08,860 really run more smoothly. 321 00:26:10,640 --> 00:26:21,380 Another reason that someone may want to discuss their diagnosis may be that they might want to be someone that advocates for people on the spectrum, 322 00:26:21,380 --> 00:26:32,310 that they might want to be part of creating an atmosphere that normalizes discussions about autism and that supports autistic individuals. 323 00:26:32,320 --> 00:26:37,670 So they may decide that part of their own journey as personal to them, 324 00:26:38,540 --> 00:26:41,840 that that may be part of how they approach things, 325 00:26:41,840 --> 00:26:43,960 at least during a season of their life. 326 00:26:44,640 --> 00:26:45,160 Um, 327 00:26:45,160 --> 00:26:45,640 so, 328 00:26:45,640 --> 00:26:52,670 in an effort to create an atmosphere of discussion and inviting discussion and advocating, 329 00:26:53,040 --> 00:26:57,290 they may give this personal kind of, 330 00:26:57,300 --> 00:26:57,860 um, 331 00:26:58,240 --> 00:27:01,180 revelation to people about their own experience, 332 00:27:01,190 --> 00:27:02,480 what they've learned, 333 00:27:02,480 --> 00:27:05,560 how they can help support individuals on the spectrum. 334 00:27:07,440 --> 00:27:11,550 I had a situation come up like that in my own life, 335 00:27:12,340 --> 00:27:23,950 after my son had been diagnosed at the age of five at our local easter seals and I was at a Children's event and my son was out there, 336 00:27:23,960 --> 00:27:24,650 um, 337 00:27:24,660 --> 00:27:36,860 taking a certain kind of lesson in a group and another mother was sitting next to me and I had seen her son there a few times before and in watching his behavior 338 00:27:36,860 --> 00:27:38,770 I did think to myself, 339 00:27:38,780 --> 00:27:42,310 I wonder if his parents know he's on the spectrum. 340 00:27:42,310 --> 00:27:44,980 It was pretty clear to me, 341 00:27:45,540 --> 00:27:46,030 um, 342 00:27:46,030 --> 00:27:51,720 for a variety of reasons... and one day she just happened to be sitting next to me. 343 00:27:51,720 --> 00:27:56,290 We hadn't sat next to each other before and she, 344 00:27:56,300 --> 00:27:58,450 I actually just said to her, 345 00:27:58,450 --> 00:27:58,830 how, 346 00:27:58,840 --> 00:28:01,060 how's your son enjoying this? 347 00:28:01,540 --> 00:28:07,720 I asked about how he likes school and my intention was not to bring up the, 348 00:28:07,730 --> 00:28:09,350 the diagnostic issue. 349 00:28:09,360 --> 00:28:11,700 My intention was just to be polite. 350 00:28:11,710 --> 00:28:13,880 So how does your son like school? 351 00:28:13,880 --> 00:28:14,980 What is he like best? 352 00:28:14,980 --> 00:28:16,080 How you know? 353 00:28:16,090 --> 00:28:16,880 Um, 354 00:28:16,890 --> 00:28:18,930 and in that process, 355 00:28:18,930 --> 00:28:19,650 she said, 356 00:28:19,660 --> 00:28:20,060 oh, 357 00:28:20,060 --> 00:28:21,550 he's doing really well, 358 00:28:21,640 --> 00:28:24,340 he's a little behind with some social things, 359 00:28:24,340 --> 00:28:26,970 but I'm sure that will mature quickly. 360 00:28:27,540 --> 00:28:28,010 Um, 361 00:28:28,010 --> 00:28:31,470 and then she said a really, 362 00:28:31,480 --> 00:28:37,890 there was a really pivotal moment for me and I was caught off guard and she said, 363 00:28:38,440 --> 00:28:39,160 actually, 364 00:28:39,160 --> 00:28:45,260 his teachers had the gall to suggest he's on the autism spectrum. 365 00:28:46,340 --> 00:28:54,110 And I had that kind of moment where you feel like everything sits still and things are moving in slow motion. 366 00:28:54,110 --> 00:28:54,740 But you know, 367 00:28:54,740 --> 00:28:56,670 you have to respond or, 368 00:28:56,680 --> 00:28:59,360 or your mind is trying to think of something to say. 369 00:29:00,740 --> 00:29:02,930 And I thought to myself, 370 00:29:02,940 --> 00:29:14,860 I know I don't have to talk about our experience with her, and I'm not feeling very generous in this moment, 371 00:29:15,440 --> 00:29:17,300 but I said, 372 00:29:17,300 --> 00:29:17,610 you know, 373 00:29:17,610 --> 00:29:19,280 if I don't say anything, 374 00:29:20,430 --> 00:29:25,350 I feel like I'm going to be agreeing that this is not something we can talk about. 375 00:29:26,340 --> 00:29:29,440 And that's not what I believe and that's not the atmosphere 376 00:29:29,440 --> 00:29:35,280 I want to create ... that if I don't reveal our experience, 377 00:29:36,140 --> 00:29:40,760 I am agreeing that it takes gall to suggest that. 378 00:29:41,940 --> 00:29:44,160 And I also didn't want to shame her. 379 00:29:44,740 --> 00:29:47,430 I know what it's like to be a struggling mom. 380 00:29:48,140 --> 00:29:48,770 I don't, 381 00:29:49,540 --> 00:29:50,110 I'm not, 382 00:29:50,120 --> 00:29:52,990 I wasn't in the same place that she is, 383 00:29:53,540 --> 00:29:57,100 but I did not want to wound her or shame her. 384 00:29:57,330 --> 00:30:03,060 And so I ended up saying in a very matter of fact tone, 385 00:30:03,070 --> 00:30:03,390 "Oh, 386 00:30:03,390 --> 00:30:05,120 my son's on the spectrum. 387 00:30:05,130 --> 00:30:08,580 We got diagnosed at easter seals and you know, 388 00:30:08,580 --> 00:30:10,670 that was one of the best things we ever did. 389 00:30:10,680 --> 00:30:14,650 His therapies were so helpful and you know, 390 00:30:14,650 --> 00:30:17,800 that was really something that was good for us." 391 00:30:19,040 --> 00:30:21,120 And then I just said to her, 392 00:30:21,130 --> 00:30:21,640 "You know, 393 00:30:21,640 --> 00:30:26,910 whatever your son needs to be doing well and uh, 394 00:30:26,920 --> 00:30:28,660 feeling good and connecting with people, 395 00:30:28,660 --> 00:30:31,060 I just hope he gets that ... whatever that is." 396 00:30:33,540 --> 00:30:39,960 So sometimes we make decisions about revelation based on what kind of atmosphere we want to promote. 397 00:30:43,690 --> 00:30:49,760 Sometimes we might want to discuss our diagnosis to formalize something in a record, 398 00:30:50,140 --> 00:30:58,650 like a medical record or a school or work record where we're asking for specific accommodations or we're asking, 399 00:30:58,660 --> 00:30:59,350 um, 400 00:30:59,740 --> 00:31:00,530 for, 401 00:31:00,540 --> 00:31:01,390 uh, 402 00:31:01,400 --> 00:31:03,000 an intervention like, 403 00:31:03,010 --> 00:31:03,580 um, 404 00:31:03,590 --> 00:31:08,250 occupational therapy or something that's going to be directed towards that need. 405 00:31:08,250 --> 00:31:10,420 So sometimes we'll um, 406 00:31:10,430 --> 00:31:17,170 discuss that with a team of people working on giving us specific interventions or accommodations. 407 00:31:19,140 --> 00:31:23,410 And we also may wish to help someone specific. 408 00:31:23,420 --> 00:31:25,470 So maybe we've, 409 00:31:25,480 --> 00:31:26,070 you know, 410 00:31:26,080 --> 00:31:29,990 we've revealed the diagnosis to some people close to us, 411 00:31:29,990 --> 00:31:38,270 but most people don't know, and you run across someone that's really struggling, and you really think you get it. 412 00:31:38,340 --> 00:31:39,020 You know, 413 00:31:39,030 --> 00:31:47,170 you think I know what that is and I was so helped by this that maybe my experience might help them. 414 00:31:47,540 --> 00:31:57,850 So you may choose in that moment or with that person to kind of talk about your own experience of diagnosis and why that made a difference for you. 415 00:31:57,850 --> 00:32:00,800 And you might say something like, 416 00:32:00,810 --> 00:32:01,220 you know, 417 00:32:01,220 --> 00:32:03,330 "I don't know if that's anything you've considered, 418 00:32:03,330 --> 00:32:05,160 but it may be something to think about." 419 00:32:08,140 --> 00:32:17,360 And the last reason I'm going to put out there is just that sometimes when you are in an increasingly close relationship, 420 00:32:17,370 --> 00:32:20,450 whether it's a friendship or um, 421 00:32:20,460 --> 00:32:22,040 a partnership, 422 00:32:22,050 --> 00:32:23,560 a romantic partnership, 423 00:32:24,540 --> 00:32:26,100 part of growing closer, 424 00:32:26,100 --> 00:32:27,180 over time, 425 00:32:28,140 --> 00:32:28,670 you know, 426 00:32:28,670 --> 00:32:31,400 maybe you've connected over favorite interests, 427 00:32:31,400 --> 00:32:33,470 maybe you've connected in a group, 428 00:32:33,480 --> 00:32:39,260 maybe it's been a year and you're getting closer and (the time frame isn't important, 429 00:32:39,260 --> 00:32:53,170 I'm just trying to emphasize that there's been this growth together) ... And part of encouraging even more intimacy and closeness is self revelation. 430 00:32:53,640 --> 00:33:03,440 So you start to reveal over time things that have really impacted you or things that you've been through and what your journey has been like. 431 00:33:03,450 --> 00:33:09,350 So someone might share with their increasingly close friend what it was like when their mom died. 432 00:33:09,840 --> 00:33:15,060 Or someone might share their diagnostic journey towards an autism diagnosis. 433 00:33:15,440 --> 00:33:23,280 So sometimes it's part of this growing intimacy that self revelation brings whatever that revelation is. 434 00:33:23,290 --> 00:33:27,770 And in this case it could have to do with the diagnosis of autism. 435 00:33:30,140 --> 00:33:34,760 Those are my scattered thoughts um, 436 00:33:34,770 --> 00:33:42,800 about talking about a journey toward diagnosis or an existing diagnosis with other people. 437 00:33:42,810 --> 00:33:48,300 And I hope that these have provided some food for thought. 438 00:33:48,310 --> 00:33:48,930 Um, 439 00:33:48,930 --> 00:34:07,440 some examples of things that you might say or might avoid or might consider. The next episode is going to focus on bringing up the conversation or the topic with people that you think may be on the spectrum that you'd like to help, 440 00:34:07,450 --> 00:34:10,520 but they really don't see this coming. 441 00:34:10,530 --> 00:34:12,660 You don't ... you're not sure how they're gonna react, 442 00:34:12,660 --> 00:34:13,850 You don't know what to say. 443 00:34:14,240 --> 00:34:19,260 So that will be this next episode and the final episode, 444 00:34:19,270 --> 00:34:25,260 I envision being about dealing with strong emotions um, 445 00:34:25,270 --> 00:34:28,280 in conversation about autism. 446 00:34:28,280 --> 00:34:34,110 So one of the things I've really experienced and learned is that people have strong, 447 00:34:34,110 --> 00:34:39,540 strong emotions for a variety of very legitimate reasons. 448 00:34:39,550 --> 00:34:42,310 And sometimes dealing with the emotions 449 00:34:42,310 --> 00:34:48,550 in the conversation can be even more difficult than figuring out the words to say. 450 00:34:48,940 --> 00:34:49,560 Um, 451 00:34:49,560 --> 00:34:54,410 and sometimes you never know what kind of emotion is going to come on the scene. 452 00:34:54,420 --> 00:34:55,260 Um, 453 00:34:55,270 --> 00:35:03,890 and so I'm going to kind of focus on this emotional exchange during the third episode of this series, 454 00:35:03,890 --> 00:35:05,860 Talking About Autism.

Join Dr. Regan for the final episode of a four part series on regulation and dysregulation on the autism spectrum. This episode focuses on recognizing when an individual is attempting to regulate and using this information to partner toward the best outcome. New Course for Clinicians - Interventions in Autism: Helping Clients Stay Centered, Connect with Others, and Engage in Life New Course for Clinicians: ASD Differential Diagnoses and Associated Characteristics Dr. Regan's Resources Book: Understanding Autism in Adults and Aging Adults, 2nd ed Audiobook Book: Understanding Autistic Behaviors Autism in the Adult website Resources for Clinicians Transcript of Episode 1 00:00:00,340 --> 00:00:03,370 This is Dr Theresa Regan. 2 00:00:03,380 --> 00:00:10,830 I'm a neuropsychologist and I specialize in understanding the way that the brain is related to emotions, 3 00:00:10,830 --> 00:00:13,000 behavior, cognition -- 4 00:00:13,000 --> 00:00:16,430 thinking skills -- and also personality. 5 00:00:16,440 --> 00:00:18,910 I'm a certified autism specialist. 6 00:00:18,920 --> 00:00:24,060 I'm the director of an autism diagnostic clinic for adults in Illinois. 7 00:00:24,070 --> 00:00:26,650 And I'm the mother of a teen on the spectrum. 8 00:00:27,740 --> 00:00:35,960 This is our final episode of a four point series on regulation and dysegulation on the autism spectrum. 9 00:00:36,440 --> 00:00:37,640 In the first episode, 10 00:00:37,640 --> 00:00:39,800 we talked about what those words mean. 11 00:00:39,800 --> 00:00:49,130 So regulation has to do with the nervous system's ability to help us stay centered with alertness... 12 00:00:49,140 --> 00:01:02,480 whether we are able to wake up quickly and efficiently in the morning and are able to wind down to sleep in the evening ... that has to do with regulation of our alertness, 13 00:01:02,490 --> 00:01:04,900 Also regulation of attention... 14 00:01:04,900 --> 00:01:14,000 so sometimes we may feel spacey and inattentive and other times we may have too much hyper focus, 15 00:01:14,000 --> 00:01:19,350 too attentive to details that aren't really helping our situation. 16 00:01:19,360 --> 00:01:21,530 And also third, 17 00:01:21,530 --> 00:01:24,370 the regulation of emotions and behavior. 18 00:01:24,370 --> 00:01:35,970 And so this would be what we typically call fight, flight, or freeze modes when someone's overwhelmed and they may revert to an outburst or a meltdown, 19 00:01:35,980 --> 00:01:39,230 they may be an individual who has quieter struggle... 20 00:01:39,230 --> 00:01:41,930 So they may have flight reactions -- 21 00:01:41,930 --> 00:01:43,590 like I'm leaving school, 22 00:01:43,590 --> 00:01:46,580 I can't come out of my room, 23 00:01:46,580 --> 00:01:48,340 I'm withdrawing. 24 00:01:48,350 --> 00:01:52,880 I'm hiding ... psychologically or physically. 25 00:01:53,740 --> 00:01:57,440 And some people have freeze reactions that ... I'm physically present, 26 00:01:57,440 --> 00:01:59,430 but I'm really shut down. 27 00:01:59,430 --> 00:02:07,660 I'm not psychologically present ... and it may even take the form of a dissociative episode like this person is shut down... 28 00:02:07,670 --> 00:02:10,520 They don't remember this conversation later. 29 00:02:10,520 --> 00:02:14,360 They're really just not able to be fully present. 30 00:02:15,440 --> 00:02:18,590 Another form of freeze reaction 31 00:02:18,590 --> 00:02:25,130 could be this expression of psychological stress through the physical body. 32 00:02:25,140 --> 00:02:29,330 So a person who's having what we call nonepileptic seizures. 33 00:02:29,340 --> 00:02:39,150 Those are seizures that are expressions of psychological struggle rather than based in electrical changes in the brain. 34 00:02:39,160 --> 00:02:42,420 That would be in this category. 35 00:02:42,420 --> 00:02:49,150 People who have feelings of physical pain in the context of emotional pain. 36 00:02:49,540 --> 00:02:52,750 People who have headaches or stomachaches etcetera. 37 00:02:55,540 --> 00:03:02,510 So we talked about ways to prevent dysregulation in the second episode. 38 00:03:02,510 --> 00:03:06,960 How to reduce those episodes of feeling uncentered. 39 00:03:08,240 --> 00:03:09,490 In the third episode, 40 00:03:09,490 --> 00:03:26,260 we talked about how to recover once dysregulation occurs, because it will ... it does for every human and there are just times in our life when we have more difficulties slipping into these dysregulated states. 41 00:03:26,270 --> 00:03:27,850 And then once that happens, 42 00:03:27,850 --> 00:03:30,760 we need to have strategies to recover. 43 00:03:30,770 --> 00:03:33,360 And that was our third topic. 44 00:03:34,040 --> 00:03:52,950 This is our fourth and final topic, and it's about how to recognize when the person you are with ... or how to recognize in yourself ... when you are attempting to regulate, because a lot of what we do as humans is say to ourselves, 45 00:03:52,950 --> 00:03:53,310 "Gosh, 46 00:03:53,310 --> 00:03:55,540 why is this person behaving that way? 47 00:03:55,550 --> 00:03:57,150 What does it mean? 48 00:03:57,640 --> 00:03:59,980 Why is my kid doing this? 49 00:04:00,050 --> 00:04:01,770 What's their intention? 50 00:04:01,770 --> 00:04:02,820 What does that mean? 51 00:04:02,830 --> 00:04:06,790 Or why did my spouse say this or didn't say this? 52 00:04:06,790 --> 00:04:08,460 What is the meaning behind that?" 53 00:04:09,040 --> 00:04:15,620 And it's really important if someone has a behavior and an attempt to regulate, that 54 00:04:15,620 --> 00:04:19,740 we understand that's what this behavior means. 55 00:04:19,740 --> 00:04:24,760 It's stemming, not from any personal issue between me and this person, 56 00:04:24,770 --> 00:04:48,260 It's stemming from an attempt to regulate and it's a sign ...it's revelation to the person and to those around him or her, that this is a person who's not feeling centered, and they're trying to get there and we all really want to support each individual's attempt to get to the center. 57 00:04:48,740 --> 00:05:04,560 And the first step is recognizing when someone is trying to do that and not interfering with their attempt to regulate unless we can offer them a better option for regulation and we'll talk about that in a little bit. 58 00:05:06,140 --> 00:05:18,160 One of the strategies that we talked about in previous episodes for regulating, whether that is alertness or attention or emotional calm, 59 00:05:19,240 --> 00:05:34,590 can have to do with the sensory system. The sensory inputs that people often use for adjusting that regulation state often has to do with pressure... 60 00:05:34,600 --> 00:05:40,460 So getting sensations of pressure, and that can be in the muscles or the joints. 61 00:05:40,940 --> 00:05:44,560 That's when we get what we call proprioceptive input. 62 00:05:44,940 --> 00:06:02,550 And that is why weighted blankets are calming for some people, that you have this pressure in the muscles and the nervous system gets these signals that it can kind of recenter, refocus, and get grounded. 63 00:06:02,840 --> 00:06:09,760 That's why yoga often is something that people gravitate toward for calming and centering, 64 00:06:09,940 --> 00:06:19,520 you often have these poses that you hold for a significant amount of time... enough that that pressure in the joint really gets settled in there. 65 00:06:19,530 --> 00:06:35,590 But there are a lot of other ways that people get pressure as well and we'll talk more about how to recognize that ... A lot of times the things people gravitate toward without really realizing why do I do this... 66 00:06:35,600 --> 00:06:42,930 There could be some sensory input part to it besides pressure... 67 00:06:42,930 --> 00:06:45,740 we're also going to be looking at movement. 68 00:06:45,750 --> 00:06:50,360 So that's when our brain receives vestibular input. 69 00:06:50,840 --> 00:07:00,690 So if person is riding their bike down through hills and down through neighborhoods, 70 00:07:00,700 --> 00:07:04,950 that person is getting vestibular input into their brain. 71 00:07:05,340 --> 00:07:18,240 And this kind of input is only present if the person is moving through space in the sense that they were in position one and now they're in position two... like they're down the street, 72 00:07:18,250 --> 00:07:23,660 that means the fluid in their ears starts to move and the brain gets this type of input... 73 00:07:24,440 --> 00:07:32,360 What doesn't give the brain vestibular movement input would be if the person is riding a stationary bike, 74 00:07:32,740 --> 00:07:37,920 they're moving their arms and legs and guess what ... they are getting proprioceptive input.... 75 00:07:37,920 --> 00:07:40,980 that pressure in their muscles and their joints... 76 00:07:41,020 --> 00:07:45,670 but they're not moving through the neighborhood, down the hill, 77 00:07:45,720 --> 00:07:53,560 they're not getting that sense of movement into the brain, and that can be why a lot of people -- and you know who you are -- 78 00:07:53,640 --> 00:07:56,650 will say, "I love running through the neighborhood, 79 00:07:56,650 --> 00:07:58,590 but I'm not going to run on a treadmill." 80 00:07:58,600 --> 00:07:59,580 You know, 81 00:07:59,590 --> 00:08:04,670 that is a clue that you are someone that needs that vestibular component, 82 00:08:04,680 --> 00:08:07,950 otherwise it just doesn't meet your sensory needs. 83 00:08:09,740 --> 00:08:25,450 Let me give some more examples of sensory strategies so that we recognize when someone around us may be using a sensory strategy. When kids or adults chew on things... 84 00:08:25,840 --> 00:08:27,110 pencils, 85 00:08:27,120 --> 00:08:28,170 shirts, 86 00:08:28,180 --> 00:08:29,910 chewing on gum, 87 00:08:29,920 --> 00:08:34,280 chewing on the tops or tabs of things. 88 00:08:34,280 --> 00:08:39,010 People put all kinds of things... like straws or tabs in their mouth. 89 00:08:39,020 --> 00:08:42,710 So our approach to correcting that is to say, 90 00:08:42,710 --> 00:08:42,900 "Hey, 91 00:08:42,900 --> 00:08:44,330 don't chew on your shirt, 92 00:08:44,330 --> 00:08:45,460 that's disgusting"... 93 00:08:45,740 --> 00:08:48,410 or don't chew on the pencil, 94 00:08:48,410 --> 00:08:49,850 it's not for chewing. 95 00:08:50,140 --> 00:08:54,580 Um but that kind of instruction doesn't really help. 96 00:08:54,590 --> 00:09:06,710 And the reason that in the long term the person kind of reverts back to that is it's probable that they actually are needing some pressure input through their jaw, 97 00:09:06,720 --> 00:09:09,680 through their uh the teeth into the jaw. 98 00:09:09,690 --> 00:09:19,950 And when you chew you get a lot of oral input and a lot of pressure input and that kind of input may be centering for that person. 99 00:09:20,440 --> 00:09:30,240 We even now ...at least in the United States, when there's an individualized educational plan for a student with attention problems or other difficulties in school, 100 00:09:30,250 --> 00:09:47,750 it may be written in their program that they're allowed to chew gum during class because it can help with focus and concentration and centering to have some pressure through the jaw and through the the teeth into the jaw. 101 00:09:49,240 --> 00:10:09,850 Another way that you might see people trying to get proprioceptive input would be that kid that is rolling on the ground, is crashing into people or things, and seems to like that.... um impact of hitting something or tackling in football, 102 00:10:10,240 --> 00:10:16,260 that kind of thing is going to give them pressure in their muscles and joints. 103 00:10:16,940 --> 00:10:34,400 Kds who like to run and jump into someone's lap or jump into a bear hug might really be wanting to get that pressure input ... for people who like to work on a laptop or on a project while they're laying on their stomach, 104 00:10:34,400 --> 00:10:38,360 you're getting a lot of pressure throughout your... 105 00:10:38,740 --> 00:10:56,460 the length of your body. When people are sitting and they're um kind of swinging their legs and they're hitting their ankles onto the the leg of the chair. 106 00:10:56,940 --> 00:11:00,960 Uh that gives pressure into the ankle joint there. 107 00:11:01,440 --> 00:11:04,360 People who like to go barefoot, 108 00:11:04,370 --> 00:11:22,550 you get a lot more proprioceptive input from the floor that way... by going barefoot rather than having a shoe on. Other people shuffle or drag their feet and they might be corrected by a parent and saying pick up your feet... 109 00:11:23,440 --> 00:11:34,020 the individual who sleeps with a ton of blankets or stuffed animals or really likes to be swaddled into something to sleep 110 00:11:34,030 --> 00:11:39,250 might be seeking pressure input. For people seeking vestibular input, 111 00:11:39,640 --> 00:11:45,970 you get that movement input ... and it may be riding the bike as I had talked about, 112 00:11:45,980 --> 00:11:54,330 It could be jumping on a trampoline (that also gives you pressure in your joints or when you flop on the bed of the trampoline). 113 00:11:54,340 --> 00:11:55,010 So you, 114 00:11:55,020 --> 00:12:00,260 you might be seeing that the person is getting both of those ... 115 00:12:02,240 --> 00:12:06,720 people who love roller coasters, who like to ride a motorcycle, 116 00:12:07,140 --> 00:12:07,910 Um, 117 00:12:07,920 --> 00:12:20,790 even just we can see that some people like to go for a ride in the car, and that clears their mind and it may be that there's some component of quiet that they find there, 118 00:12:20,790 --> 00:12:27,260 but they're also maybe just this predictable linear movement that might be calming. 119 00:12:28,440 --> 00:12:30,980 I want to tell you a story in particular. 120 00:12:30,990 --> 00:12:35,480 I saw a mother and her... 121 00:12:35,490 --> 00:12:52,510 I would say the son was probably about 10 years old, and it was one of those situations where unfortunately we were all in line to sign up for something that was related to a kids activity. 122 00:12:52,520 --> 00:12:57,890 And so there were parents in this long line and um, 123 00:12:57,900 --> 00:13:01,930 some parents had their kids with them and the line, 124 00:13:01,940 --> 00:13:07,550 I think it was raining outside and the interior of the office... 125 00:13:07,740 --> 00:13:23,220 it was just very winding and it was like you could fit one person in this little hallway and then it it just um meandered like a snake around this whole building and so you didn't see any windows and you were kind of... 126 00:13:23,230 --> 00:13:25,900 it really was loud and claustrophobic, 127 00:13:25,900 --> 00:13:29,460 it was very difficult for me to wait in that line. 128 00:13:30,340 --> 00:13:33,720 And the boy who was next to me, 129 00:13:33,730 --> 00:14:07,460 I could hear his mom talking to another mom in line ...and she was talking about how her boys loved to ride down this a really, really steep hill by their house, and she she just worries about them a bit because it's so steep and they do things like you know riding on their handlebars and ...they just are so driven to go down this hill that she hasn't been able to figure out a way to keep them from doing that. 130 00:14:08,540 --> 00:14:14,270 And in my mind I'm thinking "oh those are kids that need a lot of vestibular input, 131 00:14:14,270 --> 00:14:20,750 they need that ... they're trying to regulate and that's the way that they found that really serves that purpose. 132 00:14:21,340 --> 00:14:35,820 And interestingly, the next thing that happened was the boy next to me started shaking his head back, back, back, back, back, back, back and forth... vigorously and then he'd stop and then he'd shake, 133 00:14:35,820 --> 00:14:36,060 shake, 134 00:14:36,060 --> 00:14:36,290 shake, 135 00:14:36,290 --> 00:14:36,510 shake, 136 00:14:36,510 --> 00:14:36,780 shake, 137 00:14:36,780 --> 00:14:37,010 shake, 138 00:14:37,010 --> 00:14:50,930 shake his head and then he'd stop... and in my head, I thought "oh that's a great way for this kid to try to regulate in a hallway, because there's no way he's riding his bike down this hallway," 139 00:14:50,940 --> 00:14:52,730 but by shaking his head, 140 00:14:52,730 --> 00:14:54,150 he's standing still, 141 00:14:54,150 --> 00:15:02,300 he's not making any noise and he's getting vestibular input because his head is shaking and that fluid in the ears is moving. 142 00:15:02,540 --> 00:15:03,230 And I thought, 143 00:15:03,230 --> 00:15:03,490 wow, 144 00:15:03,490 --> 00:15:05,660 that's a really great strategy for him. 145 00:15:06,240 --> 00:15:08,180 And the mom though, 146 00:15:08,190 --> 00:15:17,060 didn't realize what was happening, and she saw that as bad behavior and she said "stop that." 147 00:15:18,240 --> 00:15:23,480 And that's really the purpose of this episode... that if we don't understand, 148 00:15:23,520 --> 00:15:24,180 you know, 149 00:15:24,180 --> 00:15:32,630 here is someone who is struggling to stand still in a winding hallway, 150 00:15:32,630 --> 00:15:34,040 that's not moving, 151 00:15:34,050 --> 00:15:35,740 the line's not moving, 152 00:15:35,750 --> 00:15:37,290 people are talking, 153 00:15:37,290 --> 00:15:39,160 it's a very close space. 154 00:15:39,640 --> 00:15:42,360 Um and he's not able to move at all. 155 00:15:43,040 --> 00:15:47,060 So here he comes up with this great strategy, 156 00:15:47,060 --> 00:15:48,570 I'm sure unconsciously, 157 00:15:48,570 --> 00:15:49,550 it's not like he thought, 158 00:15:49,550 --> 00:15:51,060 how can I get movement input? 159 00:15:51,070 --> 00:15:54,120 But his body helped him out by saying, 160 00:15:54,120 --> 00:15:54,350 hey, 161 00:15:54,350 --> 00:15:55,210 do this. 162 00:15:55,740 --> 00:15:57,670 And mom said no, 163 00:15:57,680 --> 00:16:02,770 and so what we can really do, if we recognize what is this behavior... 164 00:16:02,770 --> 00:16:03,920 we could say, 165 00:16:03,930 --> 00:16:06,450 "oh that's a great strategy, 166 00:16:07,030 --> 00:16:15,000 Does that feel good to move your head like that" -- and we can help the person identifying themselves, 167 00:16:15,000 --> 00:16:17,160 what feels calming and what they need. 168 00:16:17,840 --> 00:16:18,470 Now, 169 00:16:18,480 --> 00:16:25,930 if she felt like that was too disruptive or if he were somehow banging his head into people, 170 00:16:25,940 --> 00:16:28,400 she very well could say something like, 171 00:16:28,410 --> 00:16:31,510 oh I really see that your body has that itch 172 00:16:31,520 --> 00:16:32,250 to move, 173 00:16:32,250 --> 00:16:33,940 it really needs to move, 174 00:16:33,950 --> 00:16:36,190 That's kind of hard to do in here. 175 00:16:36,190 --> 00:16:42,160 But would you like to go to the indoor pool after we're done? 176 00:16:42,160 --> 00:16:53,240 So you can get some of that movement that you really need... so that she's offering an alternative, and she's acknowledging that that actually serves a very important need for him, 177 00:16:53,250 --> 00:17:08,950 that he needs a lot of movement throughout the day and offering him more opportunity to do that again in a way that is safe and healthy and doesn't disrupt other people is a much better strategy than saying "don't do that." 178 00:17:09,140 --> 00:17:11,620 So once she understands that, 179 00:17:11,630 --> 00:17:18,080 they'll get along well with it, once we have a detective's hat on and we can say, 180 00:17:18,080 --> 00:17:18,520 wow, 181 00:17:18,520 --> 00:17:21,240 I wonder if X, 182 00:17:21,240 --> 00:17:22,480 y and Z. 183 00:17:22,490 --> 00:17:22,890 You know, 184 00:17:22,890 --> 00:17:28,960 I wonder if this behavior that you're showing really serves a function for you that's important. 185 00:17:29,440 --> 00:17:40,060 Then our solution can be to help the person realize what's happening, to support their attempts to regulate, and to create more opportunities for good regulation. 186 00:17:42,540 --> 00:17:50,170 It also breaks up this adversarial stance between people where if I'm correcting this person and saying, 187 00:17:50,180 --> 00:17:50,960 um, 188 00:17:50,970 --> 00:17:51,440 you know, 189 00:17:51,440 --> 00:17:52,380 pick your feet up, 190 00:17:52,380 --> 00:17:55,740 don't drag your feet, and don't shake your head, and don't talk. 191 00:17:55,750 --> 00:18:18,890 It gets into this very constant kind of adversarial situation where I've established a relationship with the person where I'm making sure they fit into a very small space, and they feel like their needs aren't getting met ... and she's asking, let's take the son who likes to move or needs movement, 192 00:18:18,900 --> 00:18:22,030 She's asking him to be still and be quiet. 193 00:18:22,030 --> 00:18:25,830 So she's asking him to regulate in the hallway. 194 00:18:25,840 --> 00:18:29,560 But she's asking him not to use regulation strategies. 195 00:18:29,570 --> 00:18:31,560 So that's where the problem is. 196 00:18:31,560 --> 00:18:43,910 He can either stay in the line and tolerate it by moving his head -- or he might then become more disruptive. 197 00:18:43,910 --> 00:18:48,450 Like then "I just can't stay in the line if I can't use the movement." 198 00:18:50,640 --> 00:19:11,790 I want to give you another example I witnessed of someone who is using vestibular input to regulate, and that was a preschooler who I observed the class was walking in their single file line behind the teacher. One of the students that had a lot of difficulty regulating  199 00:19:11,790 --> 00:19:15,480 -- I already knew from past observations -- 200 00:19:15,490 --> 00:19:21,740 He was spinning while walking down in line. 201 00:19:21,750 --> 00:19:23,940 This kind of took a lot of coordination, 202 00:19:23,940 --> 00:19:27,150 but he was spinning in his own personal space, 203 00:19:27,150 --> 00:19:31,260 but while moving in a single file... line and again, 204 00:19:31,260 --> 00:19:34,520 that was something that he got reprimanded for. 205 00:19:34,530 --> 00:19:36,050 But it's a big revelation. 206 00:19:36,050 --> 00:19:37,050 It's a big clue. 207 00:19:37,340 --> 00:19:38,410 And if we can say, 208 00:19:38,410 --> 00:19:38,890 wow, 209 00:19:38,890 --> 00:19:40,350 that's a clue, 210 00:19:40,360 --> 00:19:46,240 maybe I should put this kid on a swing and and let him go before we go back into the classroom, 211 00:19:46,250 --> 00:19:48,770 then we can use that information. 212 00:19:51,140 --> 00:19:54,130 The person who wants to chew on everything. 213 00:19:54,140 --> 00:19:59,030 Maybe they can chew gum instead of chewing on pencils or ruining their shirts. 214 00:19:59,040 --> 00:20:06,770 Um maybe they can chew on a pencil topper ... so they make different things you can chew on that you could put on top of a pencil. 215 00:20:07,040 --> 00:20:17,890 Another strategy that sometimes works for kids to kind of give them another source of regulation is to have them do their homework or um you know, 216 00:20:17,890 --> 00:20:23,940 for an adult to do their projects, while sitting on an exercise ball because when you're doing that, 217 00:20:23,940 --> 00:20:30,350 you're getting more pressure into your seat and you have the opportunity to move and get that vestibular input as well. 218 00:20:30,350 --> 00:20:39,660 And sometimes that reduces the need for chewing because you're actually getting some pressure and movement and feel more centered. 219 00:20:43,840 --> 00:20:48,020 Another way that people tend to seek regulations... 220 00:20:48,020 --> 00:20:58,150 so we've talked about sensory inputs... and another way that people seek regulation is when they want to engage in their pleasurable activities. 221 00:20:58,160 --> 00:21:00,640 So for the individual on the spectrum, 222 00:21:00,640 --> 00:21:07,010 this might include something like sorting or patterning objects in their collections. 223 00:21:07,340 --> 00:21:11,590 So they may take time to sort and organize their colored pencils, 224 00:21:11,590 --> 00:21:13,060 they're playing cards, 225 00:21:13,070 --> 00:21:16,140 they may take out items to look at that 226 00:21:16,150 --> 00:21:24,350 ... they have that are figurines that are ornaments, that are books in a collection with special covers signed by the author. 227 00:21:25,940 --> 00:21:31,930 It may be that this person is wanting to read their favorite book, 228 00:21:31,930 --> 00:21:33,830 watch their favorite tv show, 229 00:21:33,840 --> 00:21:38,970 eat their favorite meal ... and this is their attempt to regulate. 230 00:21:38,970 --> 00:21:42,500 So they're gonna like ... their pleasurable, 231 00:21:42,500 --> 00:22:02,420 go-to activities ... and they're also going to tend to like things that are familiar. And one of the biggest problems I encounter for families is when they misinterpret why the person is trying to grasp at these familiar and pleasurable things. 232 00:22:02,430 --> 00:22:12,260 So let's take the example of a teenage girl who comes home from school and she is exhausted, 233 00:22:12,640 --> 00:22:14,910 it's loud at school, 234 00:22:14,920 --> 00:22:17,520 she was previously homeschooled, 235 00:22:17,520 --> 00:22:21,340 so the high school environment is a big difference. 236 00:22:21,350 --> 00:22:24,860 And after school she gets off the bus, 237 00:22:24,860 --> 00:22:34,600 she comes in and she breaks the family rule about using mom's iPad. 238 00:22:34,600 --> 00:22:41,910 So she is allowed to use mom's ipad for a certain number of minutes a day, 239 00:22:42,440 --> 00:22:47,770 and it is not until she has done her homework that she's able to start with it. 240 00:22:48,240 --> 00:23:05,170 But she goes right in to get the iPad, and she goes to her closet and she sits in the dark with the iPad, um with the closet door closed and mom finds her in there and ... really, 241 00:23:05,170 --> 00:23:08,550 really gets upset! Like this... 242 00:23:08,560 --> 00:23:10,870 these kind of things have happened before. 243 00:23:10,880 --> 00:23:16,900 And mom really views her as being very defiant, 244 00:23:16,910 --> 00:23:29,670 even though she intellectually knows the rules. She interprets her sitting in the closet in the dark with the ipad as "I know I'm not supposed to be doing this and I'm doing it anyway" 245 00:23:29,670 --> 00:23:36,200 and that feels very, very intentionally willful and defiant to mom. 246 00:23:36,200 --> 00:23:40,450 And so she um takes a very hard stance about it... 247 00:23:40,450 --> 00:23:43,960 she starts to yell and get upset, 248 00:23:43,960 --> 00:23:50,320 she grabs the ipad and physically takes it out of her daughter's hands. 249 00:23:50,840 --> 00:23:53,110 the daughter loses it, 250 00:23:53,190 --> 00:23:55,160 she starts screaming, 251 00:23:55,540 --> 00:23:58,540 she slams doors, 252 00:23:58,540 --> 00:24:03,560 she takes one of the doors ... not completely off the hinge, 253 00:24:03,560 --> 00:24:19,380 but kind of breaks and bends one of the hinges, and it just turned into a very loud screaming and property breaking kind of episode. 254 00:24:19,380 --> 00:24:29,700 And so this was unfortunate because I think mom's interpretation of what was going on was inaccurate. 255 00:24:29,720 --> 00:24:34,060 In my working with this teen, 256 00:24:34,540 --> 00:24:38,460 this is a teen with straight A's in school, 257 00:24:38,840 --> 00:24:43,760 she is very rule-oriented in school, 258 00:24:43,760 --> 00:24:47,860 which makes her mom feel very upset that she breaks the rules at home ... 259 00:24:48,640 --> 00:24:52,390 but she's just exhausted by the time she gets home, 260 00:24:52,400 --> 00:24:59,970 it's a complex academic, sensory, and social environment ...and she has not been used to it, 261 00:24:59,980 --> 00:25:05,320 she's back in a public school environment, and even the bus drive there and the bus drive home, 262 00:25:05,320 --> 00:25:06,570 that adds another, 263 00:25:06,580 --> 00:25:07,340 you know, 264 00:25:07,340 --> 00:25:15,330 hour to the day of being around all these people ...and it's very overwhelming to her. When she gets overwhelmed, 265 00:25:17,840 --> 00:25:32,000 what she wants to do is look at pictures of animals, and she wants to look up animal facts and topics and charts, and she wants to learn about a new animal and see pictures of the animal. 266 00:25:32,010 --> 00:25:54,060 And so all she's doing on the ipad is looking up animal facts and pictures and this is soothing to her. I do get where mom's coming from, that there are some households where the rule is you get to do fun things after you do your homework, 267 00:25:54,940 --> 00:26:04,740 but this person's nervous system really needs the opportunity to regroup before doing something again. 268 00:26:04,750 --> 00:26:05,550 That's hard. 269 00:26:06,340 --> 00:26:18,300 So she is at a breaking point when she comes home and it's actually her attempt to regulate that has her take this thing ... and I know she's hiding with it. 270 00:26:18,300 --> 00:26:26,360 But I also think that being in a dark, quiet space is also something she's trying to do to regulate as well. 271 00:26:29,140 --> 00:26:41,150 I think the misunderstanding is that mom feels that the daughter on the spectrum could easily comply and behave in a different way. 272 00:26:41,160 --> 00:26:51,480 And my view is that she's leaning toward trying to get her neurologic needs met and it breaks the household rule 273 00:26:51,480 --> 00:26:54,540 which puts everybody in a very tough position. 274 00:26:54,550 --> 00:27:00,810 So mom is essentially saying "I want you to regulate without doing your pleasant activities." 275 00:27:00,820 --> 00:27:06,970 And she is saying "I can't regulate if that's taken away from me." 276 00:27:06,980 --> 00:27:14,580 So mom's um kind of coming in and barging into the the bedroom area and the closet area, 277 00:27:14,580 --> 00:27:17,860 turning the lights on, physically taking away the 278 00:27:18,540 --> 00:27:30,270 ipad and raising her voice ... really added to this very overwhelming situation for her ... and then when she couldn't use flight...  279 00:27:31,040 --> 00:27:33,760 here she had come home and used flight right?... 280 00:27:33,760 --> 00:27:35,560 I'm going to go to the closet. 281 00:27:36,240 --> 00:27:36,440 Um, 282 00:27:36,440 --> 00:27:41,860 and her favorite activity to prevent a meltdown. 283 00:27:42,240 --> 00:27:44,310 Once that was taken away from her, 284 00:27:44,310 --> 00:27:48,350 then she did have a meltdown, and it wasn't in defiance... 285 00:27:48,360 --> 00:27:52,050 it was just that what she was using to regulate was taken away. 286 00:27:53,040 --> 00:27:58,300 I think there would have been a much better outcome if the parent had seen her in the closet and thought, 287 00:27:58,300 --> 00:27:58,720 wow, 288 00:27:58,730 --> 00:28:01,170 it looks like you had a really rough day. 289 00:28:01,740 --> 00:28:07,260 Does it feel good to be in a dark cozy space and looking at your animals? 290 00:28:07,740 --> 00:28:14,850 And this could have started a real dialogue about what her system needs and what she notices. 291 00:28:15,330 --> 00:28:23,200 And it can introduce this concept that we can partner together to make sure that you're safe and healthy, 292 00:28:23,200 --> 00:28:29,960 but that your needs also get met because you are important and how you're doing is important. 293 00:28:30,640 --> 00:28:30,990 Um, 294 00:28:30,990 --> 00:28:34,060 and it sets up this collaboration and this partnership. 295 00:28:35,740 --> 00:28:46,070 Maybe there could be flexibility in the iPad rule and maybe they discussed that mom really does want her to feel centered after a hard day at work. 296 00:28:46,080 --> 00:28:55,060 And one option might be that mom and daughter could sit in a dark room together after school and look at animal facts for 30 minutes. 297 00:28:55,540 --> 00:29:10,140 If the reason that mom is restricting the ipad is that she thinks that she must be in the closet because she's looking at unapproved sites ... or maybe they could decide that having animal books from the library 298 00:29:10,150 --> 00:29:10,880 299 00:29:10,880 --> 00:29:19,170 and the daughter could choose those books and go into an enclosed dark space and look at the books... 300 00:29:19,180 --> 00:29:25,270 if the reason for the rule is that mom doesn't want electronics all day in front of the daughter. 301 00:29:26,540 --> 00:29:34,310 Perhaps they could even have a tradition where after her alone time looking at animal facts and books, 302 00:29:34,310 --> 00:29:37,810 she could come out and tell mom some animal information. 303 00:29:37,920 --> 00:29:42,660 What was the most interesting that she learned... and this could also bring them together. 304 00:29:43,140 --> 00:29:43,710 305 00:29:43,710 --> 00:29:44,930 once they have this, 306 00:29:44,940 --> 00:29:49,510 this better partnership and a tradition like 'this is how you unwind, 307 00:29:49,520 --> 00:29:51,060 this is how we connect'... 308 00:29:53,350 --> 00:29:56,450 And then once they figure out that that's helpful, 309 00:29:56,940 --> 00:30:03,780 they can talk about what else could we set up for you and give you access to that would help your system. 310 00:30:03,790 --> 00:30:04,330 You know, 311 00:30:04,330 --> 00:30:22,270 maybe this person needs a weighted blanket or a hammock or maybe laying in a bubble bath after school feels grounding, and they could come up with more ideas so that she has more access rather than less access to regulating activities. 312 00:30:24,140 --> 00:30:28,080 Consider an example of a husband who comes home from work 313 00:30:28,090 --> 00:30:34,350 to his wife and two preschool kids, and he walks straight to his home office, 314 00:30:34,350 --> 00:30:35,570 he shuts the door, 315 00:30:35,580 --> 00:30:47,870 he watches tv, plays games on his phone... and his kids had just thrown themselves at him when he came in the door only to be uh rejected and feel rejected. 316 00:30:47,880 --> 00:30:54,320 His wife is feeling like she's the one who needs to recharge because she's been with the kids all day. 317 00:30:54,320 --> 00:30:59,760 She hasn't seen another adult and she also feels ignored and rejected in her marriage. 318 00:31:00,940 --> 00:31:03,360 This again is a case of, 319 00:31:03,940 --> 00:31:04,300 um, 320 00:31:04,300 --> 00:31:13,160 an autistic adult who has given everything at work and comes in and actually does need some recentering time. 321 00:31:13,640 --> 00:31:19,670 And a discussion of this would probably be more fruitful 322 00:31:20,100 --> 00:31:27,860 than people talking about discontent with it, or telling him to do something different. 323 00:31:28,440 --> 00:31:28,840 Uh, 324 00:31:28,850 --> 00:31:42,760 it may be much more strategic to say "what do you need for these 30 or 40 minutes when you get home and then I'll tell you what I need and how can we get these things that we all need in the evening." 325 00:31:45,040 --> 00:31:55,720 Another strategy would be maybe he could start doing things at his office that would help him regulate during the day and then when he gets home, 326 00:31:55,730 --> 00:31:58,800 maybe he'd have a little bit more left. 327 00:31:58,800 --> 00:32:00,880 So maybe over a lunch break, 328 00:32:00,890 --> 00:32:04,450 he could eat his sandwich while he's walking around the block, 329 00:32:04,830 --> 00:32:08,300 Maybe he could listen to music when he's not in meetings. 330 00:32:08,740 --> 00:32:18,850 So this conscious working towards strategy helps us with the regulation piece. 331 00:32:19,850 --> 00:32:21,320 Then when he gets home, 332 00:32:21,720 --> 00:32:26,330 maybe he could go into his office and do some alone things for 30 minutes. 333 00:32:26,740 --> 00:32:31,770 And if wife needs alone time then or needs together time with him, 334 00:32:32,140 --> 00:32:38,390 they could pick maybe a restorative activity for the family... one that the kids never get to do. 335 00:32:38,400 --> 00:32:53,170 But they're going to pull this out in the evening because they really need something that's restorative and calm and so maybe they don't let let the kids watch movies or eat popcorn or eat anything in the living room. 336 00:32:53,440 --> 00:33:05,000 So maybe they could have a popcorn picnic or a pancake picnic in the living room while they put on a cartoon and they can turn off the lights. 337 00:33:05,060 --> 00:33:07,540 The kids might settle down in there, 338 00:33:07,540 --> 00:33:15,490 they can turn the volume down and then the parents could just cuddle on the couch and that level of activity 339 00:33:15,490 --> 00:33:22,450 may be something that he can regulate through and that actually is also restorative for them as a family. 340 00:33:23,740 --> 00:33:35,700 So once we recognize that the behavior is not intentionally defiant or manipulative at its core... and it doesn't represent a rejection of other people, 341 00:33:35,700 --> 00:33:38,860 we can problem solve and establish a partnership. 342 00:33:39,240 --> 00:33:42,550 And if you're the individual learning about yourself, 343 00:33:42,550 --> 00:33:48,500 you can say to the other person ... it looks like you have had a crazy day, 344 00:33:48,510 --> 00:33:50,390 I want to know what you need. 345 00:33:50,400 --> 00:33:58,060 Let me tell you what I think I need ... and so we can all grow in this self awareness and in these discussions about partnering. 346 00:33:59,940 --> 00:34:07,230 It's also important to note that flight can sometimes be an attempt to save regulation as well. 347 00:34:07,240 --> 00:34:09,320 And we talked about this a little bit. 348 00:34:09,320 --> 00:34:31,190 I just want to emphasize it before we end today ... that if someone leaves the room or if they shut down or if they stop the conversation and they are just going to leave ... one danger to chasing after them physically or psychologically, 349 00:34:32,040 --> 00:34:36,180 is that that flight may be the only thing 350 00:34:36,180 --> 00:34:39,720 saving them from melting down, 351 00:34:39,730 --> 00:34:41,350 that might be their strategy... 352 00:34:41,350 --> 00:34:43,160 flight might be their strategy. 353 00:34:43,170 --> 00:34:45,360 And so if it is, 354 00:34:46,440 --> 00:34:53,540 it often doesn't help to chase after the person and prevent them from flight. 355 00:34:53,550 --> 00:35:00,900 That's not to say that we don't want to work toward a more sustained level of communication. 356 00:35:01,340 --> 00:35:09,630 It's just that what doesn't seem to work -- and even though it's understandable ---is to go kind of in chase mode, 357 00:35:09,630 --> 00:35:11,770 like "I'm not going to let this go, 358 00:35:11,770 --> 00:35:12,600 this is important, 359 00:35:12,600 --> 00:35:13,860 we need to do this." 360 00:35:14,840 --> 00:35:16,080 Again, 361 00:35:16,080 --> 00:35:18,600 there are lots of caveats to all these, 362 00:35:18,600 --> 00:35:24,740 these are kind of general principles that I found helpful, 363 00:35:24,750 --> 00:35:30,960 but there may be times that you do block an activity or escape because of safety reasons. 364 00:35:31,340 --> 00:35:35,100 Um but most of the time when I see it happening, 365 00:35:35,100 --> 00:35:36,970 it's in frustration. 366 00:35:37,340 --> 00:35:42,170 Uh that ... I'm not gonna let you leave or I'm not gonna let you be defiant. 367 00:35:43,140 --> 00:35:48,360 Another approach that may work better in the flight mode issue is saying, 368 00:35:48,370 --> 00:35:51,750 I know that having this conversation is really tough for you, 369 00:35:52,240 --> 00:35:56,340 but it's also really important to me to communicate about this. 370 00:35:56,340 --> 00:36:01,250 And what would help you feel more centered and still be able to communicate. 371 00:36:02,130 --> 00:36:14,160 So some people may do better communicating about a sensitive topic when you're sitting in the dark so that they don't have to be face to face with you and they don't have to have eye contact. 372 00:36:14,630 --> 00:36:26,540 Another person may want to email about things for the same reason... that anything you can do to reduce the intensity of the conversation might make it more successful. 373 00:36:26,550 --> 00:36:29,390 So if they're overwhelmed enough that they want to leave, 374 00:36:29,400 --> 00:36:35,950 how can you reduce the intensity without reducing the core of what you want to accomplish? 375 00:36:36,230 --> 00:36:39,710 So maybe you can reduce the eye contact. 376 00:36:39,720 --> 00:36:49,960 Maybe you can reduce um you know turn down the lights or go in a quieter spot or schedule a time instead of having it spontaneous. 377 00:36:50,930 --> 00:37:05,450 So the bottom line summary of today's episode on recognizing when someone is attempting to regulate is that the way that we interpret someone's behavior ... 378 00:37:06,140 --> 00:37:07,850 you know, "what does this mean?" 379 00:37:08,430 --> 00:37:17,490 ... it ends up impacting a lot, and if we think the behavior means someone's being disrespectful, 380 00:37:17,490 --> 00:37:36,300 manipulative, defiant, rejecting us ... then we are often going to respond in a way that's less effective than if we recognize that "oh this is a person who is dysregulated and trying to regulate. 381 00:37:36,300 --> 00:37:37,950 They're trying to get back. 382 00:37:37,960 --> 00:37:47,010 ... this is a person who's overwhelmed ... then we can make better choices about how to respond in that situation to get the better outcome, 383 00:37:47,020 --> 00:37:55,580 the best outcome ... and that may include "wow it looks like you've had a rough day" or "it's really noisy in here isn't it?" 384 00:37:55,590 --> 00:38:01,670 Or "it seems like your system might need to move"... and really problem solving together. 385 00:38:03,130 --> 00:38:07,440 I hope this four part series on regulation has been helpful to you. 386 00:38:08,330 --> 00:38:15,550 It's certainly a topic that people often contact our clinic for ... for advice and education. 387 00:38:17,430 --> 00:38:22,840 Next time you join me it will be for the beginning of our next series, and I'm going to call it, 388 00:38:22,840 --> 00:38:24,450 Talking About Autism. 389 00:38:24,830 --> 00:38:28,140 This is a listener request, and I think it's a great one. 390 00:38:28,140 --> 00:38:30,140 It was sent in by several people, 391 00:38:30,150 --> 00:38:36,950 all wanting to really hear my input about how to talk about autism with each other. 392 00:38:37,630 --> 00:38:39,110 Hope you can join me then.  

Join Dr. Regan for the third episode of a four part series on regulation and dysregulation on the autism spectrum. This episode focuses on strategies for recovering from dysregulated states.    As referenced in the podcast:  Exhaustion in Autism: Balancing Momentum for Daily Activities Gaining Momentum for Activities: Shifting from Sluggish to Active Keeping Momentum for Activities on the Autism Spectrum   Dr. Regan's Resources Book: Understanding Autism in Adults and Aging Adults, 2nd ed Audiobook Book: Understanding Autistic Behaviors Autism in the Adult website Resources for Clinicians   Transcript of Episode 1 00:00:03,540 --> 00:00:07,840 Hello everyone and welcome to this episode of the podcast, 2 00:00:07,850 --> 00:00:09,680 autism in the adult, 3 00:00:09,690 --> 00:00:10,910 I am your host, 4 00:00:10,910 --> 00:00:12,450 Dr Theresa Regan. 5 00:00:13,040 --> 00:00:14,870 I am a neuropsychologist, 6 00:00:14,870 --> 00:00:20,640 which means that I specialize in understanding how the brain impacts things like thinking, 7 00:00:20,640 --> 00:00:21,320 skills, 8 00:00:21,330 --> 00:00:22,410 emotions, 9 00:00:22,420 --> 00:00:24,560 behavior and personality. 10 00:00:25,160 --> 00:00:30,460 I'm the founder and director of an adult diagnostic autism clinic in central Illinois. 11 00:00:30,840 --> 00:00:40,560 And today we have the third episode in a series of four on the topic of regulation and dysregulation on the autism spectrum. 12 00:00:41,440 --> 00:00:42,960 In the first episode, 13 00:00:42,960 --> 00:00:51,080 we defined these terms where regulation is feeling just right in the area of alertness, 14 00:00:51,090 --> 00:01:03,630 attention and calm, and dysegulation is feeling too high or too low in these areas and when someone is not feeling centered with their emotions, 15 00:01:03,630 --> 00:01:11,960 they might have a fight, flight, or freeze reaction, and the freeze reactions might include shutting down, 16 00:01:12,410 --> 00:01:19,850 they might include physical expressions of stress, or what we call dissociation. 17 00:01:20,540 --> 00:01:31,760 Dissociation could include things like forgetting periods of time or feeling disconnected from the body or feeling that things around us are not real. 18 00:01:33,640 --> 00:01:34,800 In the first episode, 19 00:01:34,800 --> 00:01:38,030 we also reviewed that within the autism spectrum, 20 00:01:38,030 --> 00:01:43,360 dysregulation is more common than for those with different neurology. 21 00:01:44,540 --> 00:01:46,760 In the second episode of this series, 22 00:01:46,760 --> 00:02:08,760 we talked about how to reduce the number and intensity of dysregulation episodes by taking care of the nervous system on a daily basis using things like sensory inputs and other strategies and also watching how intense a life schedule the person is diving into. 23 00:02:10,520 --> 00:02:12,120 For our third episode, 24 00:02:12,120 --> 00:02:16,460 our focus will be on what to do when dysregulation hits. 25 00:02:16,940 --> 00:02:21,650 We all have dysregulated states... for the person on the spectrum, 26 00:02:21,650 --> 00:02:28,970 they may be more likely to have these and, even when we do all that we can do to support the nervous system, 27 00:02:29,440 --> 00:02:38,260 we're going to have periods where we're really not just right with regard to alertness or attention or emotional status. 28 00:02:38,840 --> 00:02:40,860 So when someone is dysregulated, 29 00:02:40,860 --> 00:02:47,170 they might appear to be sluggish or have difficulty getting going or unmotivated. 30 00:02:47,180 --> 00:02:53,360 That would be when their motor is running too low in the area of alertness and activation. 31 00:02:54,040 --> 00:03:04,330 This type of dysregulation is covered in previous episodes about exhaustion and autism, and momentum within autism. 32 00:03:04,330 --> 00:03:10,290 And I will post the links to these episodes below today, 33 00:03:10,290 --> 00:03:15,530 We're going to focus on the dysregulation that looks like anxiety, 34 00:03:15,540 --> 00:03:17,310 upset, anger, 35 00:03:17,310 --> 00:03:18,360 restlessness. 36 00:03:18,930 --> 00:03:24,570 These things that may manifest in fight, flight, or freeze reactions. 37 00:03:28,540 --> 00:03:37,480 So once there's a dysregulated state, there are things that I would recommend not doing and things that I would recommend doing. 38 00:03:37,480 --> 00:03:41,650 So we're gonna start with this category of what not to do. 39 00:03:42,040 --> 00:03:49,540 Many of the things that we have an instinct for when someone is dysregulated actually may make things worse. 40 00:03:49,550 --> 00:03:51,270 So what do we tend to do? 41 00:03:51,270 --> 00:03:51,470 Well, 42 00:03:51,470 --> 00:03:55,010 we might ask the person to talk about how they're feeling, 43 00:03:55,010 --> 00:03:56,760 why they're feeling that way, 44 00:03:56,760 --> 00:04:01,320 what triggered this really strong emotional reaction. 45 00:04:02,240 --> 00:04:08,560 We may reason with them about why they should be feeling or reacting differently. 46 00:04:08,940 --> 00:04:10,390 We might say things like, 47 00:04:10,390 --> 00:04:13,130 "Well they didn't mean it" or "it's not a big deal," 48 00:04:13,130 --> 00:04:28,420 "don't overreact", or "it's your own fault because you know you did this rule breaking activity and now you have a consequence." Or number three, we may tell them to regulate better. 49 00:04:28,440 --> 00:04:31,000 So we may say to them calm down, 50 00:04:31,010 --> 00:04:32,180 don't yell, 51 00:04:32,190 --> 00:04:43,490 look at me while I'm talking to you ... when someone is overwhelmed by what is happening around them or within their own system. 52 00:04:43,500 --> 00:04:52,360 It's really not likely to be helpful in that moment to add demands to this person who's already overwhelmed. 53 00:04:54,040 --> 00:04:56,530 For the person on the spectrum, 54 00:04:56,530 --> 00:05:02,300 it's already going to be effortful for them to figure out what their emotions are, 55 00:05:02,310 --> 00:05:09,250 what triggered them, and to talk about them face to face and eye to eye with another person. 56 00:05:10,040 --> 00:05:18,350 And we also see that it takes effort to reason in the moment, to talk ourselves down, to try to regulate ourselves. 57 00:05:18,940 --> 00:05:26,280 Um and so it's probably not only not realistic for them to be able to do that when overwhelmed, 58 00:05:26,840 --> 00:05:33,750 but talking to the individual who's overwhelmed also just adds stimulus, 59 00:05:33,760 --> 00:05:35,150 It adds demand, 60 00:05:35,150 --> 00:05:36,860 it adds noise. 61 00:05:37,740 --> 00:05:45,750 And so to the extent that talking is just adding stimulus to the situation, 62 00:05:46,540 --> 00:05:50,490 I really would recommend being calm, 63 00:05:50,490 --> 00:05:51,840 being quiet. 64 00:05:52,340 --> 00:05:59,360 Not necessarily engaging with the person in the moment that they are overwhelmed. 65 00:06:00,540 --> 00:06:21,560 So in general I find it helpful to reduce talking at that point of dysregulation unless there's a safety issue that you're trying to quickly address but otherwise um I really would not recommend a lot of talking and reasoning and explaining during that period of time 66 00:06:24,440 --> 00:06:34,060 Other things that I would recommend not doing would be ... I would not take away possessions from them at this time. 67 00:06:34,540 --> 00:06:37,820 So don't try to take something out of their hands. 68 00:06:37,830 --> 00:06:43,810 Don't try to take something away from their space or their room... 69 00:06:43,820 --> 00:06:51,070 the place where maybe they find comfort. Objects are often very important to the individual on the spectrum. 70 00:06:51,070 --> 00:06:55,530 And when someone's dysregulated and overwhelmed, 71 00:06:55,530 --> 00:07:01,660 it's often not a good time to try to separate them from something that's that important to them. 72 00:07:03,640 --> 00:07:09,120 Likewise touching them or wrestling with them ...kind of getting into their space. 73 00:07:09,130 --> 00:07:16,060 Um It's generally again going to add stimulus to what they're trying to process. 74 00:07:16,070 --> 00:07:26,660 So now I have touch-stimulus, and I have people in my space, and that is often likely to increase this dysregulated state. 75 00:07:27,640 --> 00:07:35,830 Again just kind of thinking how much information is coming at this individual who's already overwhelmed. 76 00:07:35,830 --> 00:07:46,660 So it's a lot of stimulus to come at them all at once, and to be in their space or to take away some of the possessions that are important to them... 77 00:07:48,520 --> 00:07:50,970 So during a period of dysregulation, 78 00:07:50,970 --> 00:08:09,650 the general concept to follow is that reducing stimuli and demand in that moment may help the individual become better regulated, but adding things that are stimuli to them that they have to process ... 79 00:08:09,660 --> 00:08:12,090 adding your speech, adding... 80 00:08:12,090 --> 00:08:13,990 being in in their space, 81 00:08:14,000 --> 00:08:17,080 taking away things that are comforting to them... 82 00:08:17,080 --> 00:08:20,860 that's likely to increase the dysregulated state. 83 00:08:23,440 --> 00:08:36,660 Another thing that you can do to help not increase this escalation of being overwhelmed is don't respond to the individual with heightened emotion. 84 00:08:37,440 --> 00:08:45,220 So emotional atmospheres can feel very intense and overwhelming to the individual on the spectrum. 85 00:08:45,220 --> 00:09:06,420 And when the person is already overwhelmed by their own emotions, it's really even more overwhelming if they have to react to and process your emotion that is coming toward them... it adds so much... this feeling of being overwhelmed. 86 00:09:08,040 --> 00:09:14,760 I would recommend staying very calm and even and predictable. 87 00:09:17,240 --> 00:09:27,650 I would make sure not to respond with reactivity, or unexpected statements or behaviors that they also have to react to and process. 88 00:09:28,240 --> 00:09:31,670 If you do approach the person with high reactivity, 89 00:09:31,680 --> 00:09:43,970 you're really asking them again to deal with a lot of new unique intense stimuli coming at them and to deal with your reaction as well as their own. 90 00:09:43,980 --> 00:09:52,760 And this is likely to increase this escalation of ... you know, feeling so upset or dysregulated. 91 00:09:55,840 --> 00:10:08,350 The goal that we've talked about so far is this goal of reducing what the person is having to process in that moment when they're already dysregulated. 92 00:10:10,040 --> 00:10:26,190 We'd like to take away some of the intensity of the situation to help them be able to recenter, to regroup, and in addition to reducing intense inputs around the individual. 93 00:10:26,240 --> 00:10:38,930 The focus should be on adding inputs that are regulating, that are calming, that are centering... these may be things like sensory inputs. 94 00:10:38,940 --> 00:10:43,950 And we talked about some of the strategies for this during the last episode. 95 00:10:44,440 --> 00:10:53,160 But, for example, an individual on the spectrum may really like pressure inputs or movement inputs. 96 00:10:53,730 --> 00:11:06,880 So an individual when dysregulated may be calm or help center themselves when they use a weighted blanket, or maybe they know that if they soak in a tub, 97 00:11:06,890 --> 00:11:09,660 they feel a lot more centered after that. 98 00:11:10,240 --> 00:11:13,360 Some people recenter by lifting weights, 99 00:11:13,360 --> 00:11:14,330 doing yoga, 100 00:11:14,330 --> 00:11:26,460 swinging ... these pressure inputs into the muscles and joints and the movement that the body has through space when it's doing things like swinging or bike riding. 101 00:11:28,340 --> 00:11:30,830 Those experiences may be calming, 102 00:11:30,840 --> 00:11:38,750 they may be centering for the individuals so if you can add calming and centering inputs without talking, 103 00:11:39,440 --> 00:11:43,250 this can really help getting back to a regulated state. 104 00:11:44,140 --> 00:11:55,150 And the second thing that can be centering for the individual is being able to do something that's soothing or filling for them. 105 00:11:55,740 --> 00:11:58,480 So thinking about this individual, 106 00:11:58,480 --> 00:12:01,210 what do they lean towards doing ... that 107 00:12:01,210 --> 00:12:04,050 they seem to find rejuvenating. 108 00:12:05,240 --> 00:12:17,860 Someone may really feel calmed and soothed when they are building a model of a boat or a car or when they're building something with legos, 109 00:12:18,840 --> 00:12:28,460 another person may love sorting through their collections or sorting through images on Pinterest, 110 00:12:28,840 --> 00:12:36,510 looking at various colors that are so ... they're just so compelled by these colors, 111 00:12:36,520 --> 00:12:40,760 they capture their attention and it's almost like they just fill, 112 00:12:40,770 --> 00:12:45,290 fill this person up ... and they feel so rejuvenated. 113 00:12:46,240 --> 00:12:53,980 A third person may love to listen to history podcasts or to watch a favorite movie, 114 00:12:53,990 --> 00:12:57,870 even one that they've watched 100 times, 115 00:12:57,880 --> 00:13:04,560 It may be their go-to movie when they want to regroup and settle back to the center. 116 00:13:05,540 --> 00:13:10,020 In these moments of being uncentered and wanting to recenter, 117 00:13:10,030 --> 00:13:17,640 it's very likely that familiar things will be more calming than new things. 118 00:13:17,640 --> 00:13:24,650 So um a lot of times if people watch what they're drawn to on a difficult day, 119 00:13:24,740 --> 00:13:27,850 it may give them this information. 120 00:13:27,860 --> 00:13:38,590 This when they're a detective about their own reactions, about what they go to when they do need to have a recentered moment. 121 00:13:38,600 --> 00:14:05,300 And one person may know that on difficult days they tend to watch the same particular movie or another person may know that on difficult days they tend to go for this same food pattern of eating that this is their go-to when they want to soothe and calm and recenter so far. 122 00:14:05,300 --> 00:14:35,050 We've talked about the importance of reducing stimuli and demand during a dysregulated episode and the impact of increasing familiar and soothing inputs during these episodes ... because the first goal that we want is for a recentering ... The final thing I would recommend is that the individual and those who are family or friends should try to work out ahead of time 123 00:14:35,640 --> 00:14:37,320 some type of game plan, 124 00:14:37,350 --> 00:14:53,130 a strategy for coping when the individual is dysregulated. Because during that episode, the brain is overwhelmed and it's not going to be great at thinking "What should I do?" 125 00:14:53,270 --> 00:14:53,690 You know, 126 00:14:53,690 --> 00:14:56,800 what should I do during this episode to feel better? 127 00:14:57,340 --> 00:15:10,650 So all this detective work ahead of time about what is calming and soothing and filling to me, and what is draining and overwhelming ... can be done ahead of time. 128 00:15:11,240 --> 00:15:13,260 People do it all different ways. 129 00:15:13,260 --> 00:15:23,230 Some of them make a list that they can look at when they are dysregulated ... of things that they can do to feel more centered. 130 00:15:23,240 --> 00:15:24,200 Oh yes, 131 00:15:24,210 --> 00:15:24,590 you know, 132 00:15:24,590 --> 00:15:25,940 I wouldn't have thought of this, 133 00:15:25,940 --> 00:15:32,060 but I can take a walk outside of the weather permits and I actually do feel better then. 134 00:15:32,840 --> 00:15:41,890 Sometimes people make a box ahead of time of items in it that are soothing. 135 00:15:41,890 --> 00:15:46,070 They might have a lava lamp in there that they can just watch, 136 00:15:46,070 --> 00:15:47,960 they might have a stress ball. 137 00:15:48,440 --> 00:15:57,350 Uh there might be slime or different scents like lavender or vanilla that are soothing or calming. 138 00:15:59,140 --> 00:16:06,550 So this detective work ahead of time can be really helpful and then adding cues to the person 139 00:16:06,550 --> 00:16:09,000 either from familiar people who can say, 140 00:16:09,000 --> 00:16:09,280 hey, 141 00:16:09,280 --> 00:16:14,900 I wonder if it would feel good for you to do this or to have it in the environment, 142 00:16:14,900 --> 00:16:17,460 like a list or a box of items... 143 00:16:19,840 --> 00:16:27,240 Ideally the individual will have a sense over time of when a dysegulated state is coming on. 144 00:16:27,250 --> 00:16:28,660 So for example, 145 00:16:28,670 --> 00:16:37,060 if they lean toward starting to shut down or disassociate during difficult times or difficult conversations, 146 00:16:37,470 --> 00:16:43,520 they may start to catch themselves when their mind starts to go blank and they're talking to somebody. 147 00:16:44,540 --> 00:16:49,630 They also may have a sense over time of when this happens at home, 148 00:16:49,670 --> 00:16:55,320 it often helps me to do these kinds of things-- and when it happens in public, 149 00:16:55,330 --> 00:16:57,860 I've learned to do these other kinds of things. 150 00:16:59,140 --> 00:17:02,700 Being able to recognize dysregulation, know 151 00:17:02,700 --> 00:17:11,670 what you can do to help recenter, and getting to the point where you can communicate briefly to other people around you about what's happening... 152 00:17:11,680 --> 00:17:21,090 that can really add another layer of growing into maturity with these strategies ...That, as we communicate with other people, 153 00:17:21,100 --> 00:17:25,370 we can really stabilize these situations and these relationships. 154 00:17:25,380 --> 00:17:26,850 So for example, 155 00:17:26,850 --> 00:17:33,770 if you are becoming dysregulated during a meeting at work, and you realize that you're headed for a meltdown, 156 00:17:34,140 --> 00:17:40,530 it's generally very acceptable and professional in most work settings to step out... 157 00:17:40,540 --> 00:17:49,670 if you offer some type of explanation...  walking out of the room without explanation would not be considered okay or professional, 158 00:17:50,040 --> 00:17:55,250 but someone may use a very generic explanation and just say, 159 00:17:55,260 --> 00:17:55,870 "You know, 160 00:17:55,880 --> 00:17:58,340 I'm starting to not feel very well, 161 00:17:58,340 --> 00:18:13,360 I just need to get some air" or the person may have the kind of relationship with their boss where they've discussed some things already that helped them in intense situations at work. 162 00:18:14,940 --> 00:18:17,480 So in that case the person might say, 163 00:18:17,480 --> 00:18:17,840 "You know, 164 00:18:17,840 --> 00:18:21,450 I can see that I'm really feeling passionate about this topic, 165 00:18:21,840 --> 00:18:29,660 but I also want to be able to hear what you have to say and ways in what your opinion is different from mine. 166 00:18:29,670 --> 00:18:34,050 And I think I just need to step out to regroup for a few minutes," 167 00:18:34,740 --> 00:18:45,960 or if the strategy has to do with reducing the intensity of the conversation and a few minutes of stepping out is probably not going to be enough to regulate. 168 00:18:46,440 --> 00:18:48,310 They may say to their boss, 169 00:18:48,320 --> 00:18:48,720 "You know, 170 00:18:48,720 --> 00:18:52,890 I can feel myself getting really passionate about my own opinion, 171 00:18:52,890 --> 00:18:55,920 but I know that your perspective is important too, 172 00:18:55,920 --> 00:19:08,140 and I'm wondering if I could take time to gather my thoughts and to send them to an email so that I've kind of processed them and they're organized. 173 00:19:08,260 --> 00:19:11,440 I'd really love for you to hear them, 174 00:19:11,440 --> 00:19:14,320 but I also would like to read your thoughts. 175 00:19:14,320 --> 00:19:15,960 If you could send them to me. 176 00:19:15,970 --> 00:19:32,670 I find that a lot of times when I'm processing information that's really important to me having time to mull it over and having some time to get organized with my thoughts before a discussion with my colleagues really helps. 177 00:19:33,940 --> 00:19:39,360 Then I would like to come back and talk more about our opinions and talk them through." 178 00:19:40,340 --> 00:19:51,640 Sometimes the addition of time to process and removing this face to face intensity of the moment can help a person stay centered while still communicating about difficult things. 179 00:19:51,650 --> 00:19:55,330 So this could be a technique that's done in a workplace, 180 00:19:55,340 --> 00:20:06,600 in a school setting, or even just as part of a friendship or partnership when you're both having this intense conversation about something that you disagree on. 181 00:20:06,600 --> 00:20:07,970 But it's very important, 182 00:20:07,970 --> 00:20:08,290 you know, 183 00:20:08,290 --> 00:20:17,670 being able to have time and space to process before you come back together can help stabilize that interaction. 184 00:20:20,940 --> 00:20:35,920 It especially helps if you can let the other person know that the reason you're stepping back is because you do want to be able to process differing opinions and that their their opinion is important to you, 185 00:20:35,920 --> 00:20:38,430 even though you disagree with it. 186 00:20:38,440 --> 00:20:46,530 Um that it kind of helps show that you want there to be a good exchange. 187 00:20:46,540 --> 00:20:48,000 If you're walking out, 188 00:20:48,000 --> 00:20:52,110 sometimes people feel like they're not even committed to a good exchange. 189 00:20:52,110 --> 00:20:54,950 So what ... what good is this partnership? 190 00:20:54,960 --> 00:21:09,600 But if you can say it's because I really want to process things well, and I really want to hear your thoughts even though I can feel myself getting too passionate about the topic right now. 191 00:21:09,610 --> 00:21:16,260 Sometimes that puts in perspective that this is someone that does want to make this exchange of ideas work. 192 00:21:18,540 --> 00:21:28,670 That is a summary of someone who has gone on a long journey of figuring out what it feels like to them when they're dysregulated ... 193 00:21:29,440 --> 00:22:07,960 what kinds of things they can do to try to salvage that interaction and recenter in particular settings, and how they can communicate that to other people with experience and detective work and being mindful about kind of planning and sorting these things out the individual and those around him can develop communication about the strategies that work best and knowing these things and communicating about them can stabilize different interactions over time. 194 00:22:08,640 --> 00:22:14,960 So we've talked now about several ways to approach periods of dis regulation. 195 00:22:15,340 --> 00:22:31,060 One thing I will end up emphasizing here is that these are all general statement and of course there are also exceptions to every general principle and I can't address every type of situation, 196 00:22:31,140 --> 00:22:38,260 but all I can say certainly is that these are general things I've noticed that do help or don't help. 197 00:22:40,120 --> 00:22:44,630 Focus should also always be on the person's safety in that moment, 198 00:22:44,630 --> 00:22:47,690 if there's something unsafe that needs to be stopped, 199 00:22:47,700 --> 00:22:52,260 that's really something to immediately intervene with. 200 00:22:53,340 --> 00:23:01,460 But in general reducing stimuli and demand and increasing soothing inputs can be really helpful. 201 00:23:03,840 --> 00:23:12,810 I don't want to leave the impression that I don't think the autistic individuals should ever experience challenge in his or her life. 202 00:23:12,810 --> 00:23:36,960 So we all benefit from this appropriate level of challenge with support and that helps us grow, and the topic during this episode happens to relate to whether adding challenge and demand to the individual while they're dysregulated is generally fruitful ... and that's when I think it's just the wrong timing. 203 00:23:37,440 --> 00:23:48,800 So challenge should be added when the individual is fairly centered and regulated, and that's why working on regulation first can be beneficial -- 204 00:23:48,800 --> 00:23:54,860 so that goals with some challenge can be added once regulation has improved. 205 00:23:57,640 --> 00:24:05,670 Now our next episode will be the final in our four episode series on regulation and dysregulation. 206 00:24:07,140 --> 00:24:09,360 In the 4th and final episode, 207 00:24:09,360 --> 00:24:19,670 we'll talk about how to recognize when someone is trying to regulate themselves, and what to do and not do in those situations. 208 00:24:20,740 --> 00:24:28,060 So thank you for joining me, and I hope to catch you next time for the final episode of the series on regulation.    

Join Dr. Regan for the second episode of a four part series on regulation and dysregulation on the autism spectrum. This episode focuses on three strategies to help reduce the frequency and intensity of dysregulation episodes for the autistic individual.    Zur Institute webinar Feb 2022: ASD Interventions Across the Lifespan   Dr. Regan's Resources Book: Understanding Autism in Adults and Aging Adults, 2nd ed Audiobook Book: Understanding Autistic Behaviors Autism in the Adult website Resources for Clinicians 1 00:00:03,540 --> 00:00:07,840 Hello everyone and welcome to this episode of the podcast, 2 00:00:07,850 --> 00:00:09,680 autism in the adult, 3 00:00:09,690 --> 00:00:10,910 I am your host, 4 00:00:10,910 --> 00:00:12,450 Dr Theresa Regan. 5 00:00:13,040 --> 00:00:14,870 I am a neuropsychologist, 6 00:00:14,870 --> 00:00:20,640 which means that I specialize in understanding how the brain impacts things like thinking, 7 00:00:20,640 --> 00:00:21,320 skills, 8 00:00:21,330 --> 00:00:22,410 emotions, 9 00:00:22,420 --> 00:00:24,560 behavior and personality. 10 00:00:25,160 --> 00:00:30,460 I'm the founder and director of an adult diagnostic autism clinic in central Illinois. 11 00:00:30,840 --> 00:00:40,560 And today we have the third episode in a series of four on the topic of regulation and dysregulation on the autism spectrum. 12 00:00:41,440 --> 00:00:42,960 In the first episode, 13 00:00:42,960 --> 00:00:51,080 we defined these terms where regulation is feeling just right in the area of alertness, 14 00:00:51,090 --> 00:01:03,630 attention and calm, and dysegulation is feeling too high or too low in these areas and when someone is not feeling centered with their emotions, 15 00:01:03,630 --> 00:01:11,960 they might have a fight, flight, or freeze reaction, and the freeze reactions might include shutting down, 16 00:01:12,410 --> 00:01:19,850 they might include physical expressions of stress, or what we call dissociation. 17 00:01:20,540 --> 00:01:31,760 Dissociation could include things like forgetting periods of time or feeling disconnected from the body or feeling that things around us are not real. 18 00:01:33,640 --> 00:01:34,800 In the first episode, 19 00:01:34,800 --> 00:01:38,030 we also reviewed that within the autism spectrum, 20 00:01:38,030 --> 00:01:43,360 dysregulation is more common than for those with different neurology. 21 00:01:44,540 --> 00:01:46,760 In the second episode of this series, 22 00:01:46,760 --> 00:02:08,760 we talked about how to reduce the number and intensity of dysregulation episodes by taking care of the nervous system on a daily basis using things like sensory inputs and other strategies and also watching how intense a life schedule the person is diving into. 23 00:02:10,520 --> 00:02:12,120 For our third episode, 24 00:02:12,120 --> 00:02:16,460 our focus will be on what to do when dysregulation hits. 25 00:02:16,940 --> 00:02:21,650 We all have dysregulated states... for the person on the spectrum, 26 00:02:21,650 --> 00:02:28,970 they may be more likely to have these and, even when we do all that we can do to support the nervous system, 27 00:02:29,440 --> 00:02:38,260 we're going to have periods where we're really not just right with regard to alertness or attention or emotional status. 28 00:02:38,840 --> 00:02:40,860 So when someone is dysregulated, 29 00:02:40,860 --> 00:02:47,170 they might appear to be sluggish or have difficulty getting going or unmotivated. 30 00:02:47,180 --> 00:02:53,360 That would be when their motor is running too low in the area of alertness and activation. 31 00:02:54,040 --> 00:03:04,330 This type of dysregulation is covered in previous episodes about exhaustion and autism, and momentum within autism. 32 00:03:04,330 --> 00:03:10,290 And I will post the links to these episodes below today, 33 00:03:10,290 --> 00:03:15,530 We're going to focus on the dysregulation that looks like anxiety, 34 00:03:15,540 --> 00:03:17,310 upset, anger, 35 00:03:17,310 --> 00:03:18,360 restlessness. 36 00:03:18,930 --> 00:03:24,570 These things that may manifest in fight, flight, or freeze reactions. 37 00:03:28,540 --> 00:03:37,480 So once there's a dysregulated state, there are things that I would recommend not doing and things that I would recommend doing. 38 00:03:37,480 --> 00:03:41,650 So we're gonna start with this category of what not to do. 39 00:03:42,040 --> 00:03:49,540 Many of the things that we have an instinct for when someone is dysregulated actually may make things worse. 40 00:03:49,550 --> 00:03:51,270 So what do we tend to do? 41 00:03:51,270 --> 00:03:51,470 Well, 42 00:03:51,470 --> 00:03:55,010 we might ask the person to talk about how they're feeling, 43 00:03:55,010 --> 00:03:56,760 why they're feeling that way, 44 00:03:56,760 --> 00:04:01,320 what triggered this really strong emotional reaction. 45 00:04:02,240 --> 00:04:08,560 We may reason with them about why they should be feeling or reacting differently. 46 00:04:08,940 --> 00:04:10,390 We might say things like, 47 00:04:10,390 --> 00:04:13,130 "Well they didn't mean it" or "it's not a big deal," 48 00:04:13,130 --> 00:04:28,420 "don't overreact", or "it's your own fault because you know you did this rule breaking activity and now you have a consequence." Or number three, we may tell them to regulate better. 49 00:04:28,440 --> 00:04:31,000 So we may say to them calm down, 50 00:04:31,010 --> 00:04:32,180 don't yell, 51 00:04:32,190 --> 00:04:43,490 look at me while I'm talking to you ... when someone is overwhelmed by what is happening around them or within their own system. 52 00:04:43,500 --> 00:04:52,360 It's really not likely to be helpful in that moment to add demands to this person who's already overwhelmed. 53 00:04:54,040 --> 00:04:56,530 For the person on the spectrum, 54 00:04:56,530 --> 00:05:02,300 it's already going to be effortful for them to figure out what their emotions are, 55 00:05:02,310 --> 00:05:09,250 what triggered them, and to talk about them face to face and eye to eye with another person. 56 00:05:10,040 --> 00:05:18,350 And we also see that it takes effort to reason in the moment, to talk ourselves down, to try to regulate ourselves. 57 00:05:18,940 --> 00:05:26,280 Um and so it's probably not only not realistic for them to be able to do that when overwhelmed, 58 00:05:26,840 --> 00:05:33,750 but talking to the individual who's overwhelmed also just adds stimulus, 59 00:05:33,760 --> 00:05:35,150 It adds demand, 60 00:05:35,150 --> 00:05:36,860 it adds noise. 61 00:05:37,740 --> 00:05:45,750 And so to the extent that talking is just adding stimulus to the situation, 62 00:05:46,540 --> 00:05:50,490 I really would recommend being calm, 63 00:05:50,490 --> 00:05:51,840 being quiet. 64 00:05:52,340 --> 00:05:59,360 Not necessarily engaging with the person in the moment that they are overwhelmed. 65 00:06:00,540 --> 00:06:21,560 So in general I find it helpful to reduce talking at that point of dysregulation unless there's a safety issue that you're trying to quickly address but otherwise um I really would not recommend a lot of talking and reasoning and explaining during that period of time 66 00:06:24,440 --> 00:06:34,060 Other things that I would recommend not doing would be ... I would not take away possessions from them at this time. 67 00:06:34,540 --> 00:06:37,820 So don't try to take something out of their hands. 68 00:06:37,830 --> 00:06:43,810 Don't try to take something away from their space or their room... 69 00:06:43,820 --> 00:06:51,070 the place where maybe they find comfort. Objects are often very important to the individual on the spectrum. 70 00:06:51,070 --> 00:06:55,530 And when someone's dysregulated and overwhelmed, 71 00:06:55,530 --> 00:07:01,660 it's often not a good time to try to separate them from something that's that important to them. 72 00:07:03,640 --> 00:07:09,120 Likewise touching them or wrestling with them ...kind of getting into their space. 73 00:07:09,130 --> 00:07:16,060 Um It's generally again going to add stimulus to what they're trying to process. 74 00:07:16,070 --> 00:07:26,660 So now I have touch-stimulus, and I have people in my space, and that is often likely to increase this dysregulated state. 75 00:07:27,640 --> 00:07:35,830 Again just kind of thinking how much information is coming at this individual who's already overwhelmed. 76 00:07:35,830 --> 00:07:46,660 So it's a lot of stimulus to come at them all at once, and to be in their space or to take away some of the possessions that are important to them... 77 00:07:48,520 --> 00:07:50,970 So during a period of dysregulation, 78 00:07:50,970 --> 00:08:09,650 the general concept to follow is that reducing stimuli and demand in that moment may help the individual become better regulated, but adding things that are stimuli to them that they have to process ... 79 00:08:09,660 --> 00:08:12,090 adding your speech, adding... 80 00:08:12,090 --> 00:08:13,990 being in in their space, 81 00:08:14,000 --> 00:08:17,080 taking away things that are comforting to them... 82 00:08:17,080 --> 00:08:20,860 that's likely to increase the dysregulated state. 83 00:08:23,440 --> 00:08:36,660 Another thing that you can do to help not increase this escalation of being overwhelmed is don't respond to the individual with heightened emotion. 84 00:08:37,440 --> 00:08:45,220 So emotional atmospheres can feel very intense and overwhelming to the individual on the spectrum. 85 00:08:45,220 --> 00:09:06,420 And when the person is already overwhelmed by their own emotions, it's really even more overwhelming if they have to react to and process your emotion that is coming toward them... it adds so much... this feeling of being overwhelmed. 86 00:09:08,040 --> 00:09:14,760 I would recommend staying very calm and even and predictable. 87 00:09:17,240 --> 00:09:27,650 I would make sure not to respond with reactivity, or unexpected statements or behaviors that they also have to react to and process. 88 00:09:28,240 --> 00:09:31,670 If you do approach the person with high reactivity, 89 00:09:31,680 --> 00:09:43,970 you're really asking them again to deal with a lot of new unique intense stimuli coming at them and to deal with your reaction as well as their own. 90 00:09:43,980 --> 00:09:52,760 And this is likely to increase this escalation of ... you know, feeling so upset or dysregulated. 91 00:09:55,840 --> 00:10:08,350 The goal that we've talked about so far is this goal of reducing what the person is having to process in that moment when they're already dysregulated. 92 00:10:10,040 --> 00:10:26,190 We'd like to take away some of the intensity of the situation to help them be able to recenter, to regroup, and in addition to reducing intense inputs around the individual. 93 00:10:26,240 --> 00:10:38,930 The focus should be on adding inputs that are regulating, that are calming, that are centering... these may be things like sensory inputs. 94 00:10:38,940 --> 00:10:43,950 And we talked about some of the strategies for this during the last episode. 95 00:10:44,440 --> 00:10:53,160 But, for example, an individual on the spectrum may really like pressure inputs or movement inputs. 96 00:10:53,730 --> 00:11:06,880 So an individual when dysregulated may be calm or help center themselves when they use a weighted blanket, or maybe they know that if they soak in a tub, 97 00:11:06,890 --> 00:11:09,660 they feel a lot more centered after that. 98 00:11:10,240 --> 00:11:13,360 Some people recenter by lifting weights, 99 00:11:13,360 --> 00:11:14,330 doing yoga, 100 00:11:14,330 --> 00:11:26,460 swinging ... these pressure inputs into the muscles and joints and the movement that the body has through space when it's doing things like swinging or bike riding. 101 00:11:28,340 --> 00:11:30,830 Those experiences may be calming, 102 00:11:30,840 --> 00:11:38,750 they may be centering for the individuals so if you can add calming and centering inputs without talking, 103 00:11:39,440 --> 00:11:43,250 this can really help getting back to a regulated state. 104 00:11:44,140 --> 00:11:55,150 And the second thing that can be centering for the individual is being able to do something that's soothing or filling for them. 105 00:11:55,740 --> 00:11:58,480 So thinking about this individual, 106 00:11:58,480 --> 00:12:01,210 what do they lean towards doing ... that 107 00:12:01,210 --> 00:12:04,050 they seem to find rejuvenating. 108 00:12:05,240 --> 00:12:17,860 Someone may really feel calmed and soothed when they are building a model of a boat or a car or when they're building something with legos, 109 00:12:18,840 --> 00:12:28,460 another person may love sorting through their collections or sorting through images on Pinterest, 110 00:12:28,840 --> 00:12:36,510 looking at various colors that are so ... they're just so compelled by these colors, 111 00:12:36,520 --> 00:12:40,760 they capture their attention and it's almost like they just fill, 112 00:12:40,770 --> 00:12:45,290 fill this person up ... and they feel so rejuvenated. 113 00:12:46,240 --> 00:12:53,980 A third person may love to listen to history podcasts or to watch a favorite movie, 114 00:12:53,990 --> 00:12:57,870 even one that they've watched 100 times, 115 00:12:57,880 --> 00:13:04,560 It may be their go-to movie when they want to regroup and settle back to the center. 116 00:13:05,540 --> 00:13:10,020 In these moments of being uncentered and wanting to recenter, 117 00:13:10,030 --> 00:13:17,640 it's very likely that familiar things will be more calming than new things. 118 00:13:17,640 --> 00:13:24,650 So um a lot of times if people watch what they're drawn to on a difficult day, 119 00:13:24,740 --> 00:13:27,850 it may give them this information. 120 00:13:27,860 --> 00:13:38,590 This when they're a detective about their own reactions, about what they go to when they do need to have a recentered moment. 121 00:13:38,600 --> 00:14:05,300 And one person may know that on difficult days they tend to watch the same particular movie or another person may know that on difficult days they tend to go for this same food pattern of eating that this is their go-to when they want to soothe and calm and recenter so far. 122 00:14:05,300 --> 00:14:35,050 We've talked about the importance of reducing stimuli and demand during a dysregulated episode and the impact of increasing familiar and soothing inputs during these episodes ... because the first goal that we want is for a recentering ... The final thing I would recommend is that the individual and those who are family or friends should try to work out ahead of time 123 00:14:35,640 --> 00:14:37,320 some type of game plan, 124 00:14:37,350 --> 00:14:53,130 a strategy for coping when the individual is dysregulated. Because during that episode, the brain is overwhelmed and it's not going to be great at thinking "What should I do?" 125 00:14:53,270 --> 00:14:53,690 You know, 126 00:14:53,690 --> 00:14:56,800 what should I do during this episode to feel better? 127 00:14:57,340 --> 00:15:10,650 So all this detective work ahead of time about what is calming and soothing and filling to me, and what is draining and overwhelming ... can be done ahead of time. 128 00:15:11,240 --> 00:15:13,260 People do it all different ways. 129 00:15:13,260 --> 00:15:23,230 Some of them make a list that they can look at when they are dysregulated ... of things that they can do to feel more centered. 130 00:15:23,240 --> 00:15:24,200 Oh yes, 131 00:15:24,210 --> 00:15:24,590 you know, 132 00:15:24,590 --> 00:15:25,940 I wouldn't have thought of this, 133 00:15:25,940 --> 00:15:32,060 but I can take a walk outside of the weather permits and I actually do feel better then. 134 00:15:32,840 --> 00:15:41,890 Sometimes people make a box ahead of time of items in it that are soothing. 135 00:15:41,890 --> 00:15:46,070 They might have a lava lamp in there that they can just watch, 136 00:15:46,070 --> 00:15:47,960 they might have a stress ball. 137 00:15:48,440 --> 00:15:57,350 Uh there might be slime or different scents like lavender or vanilla that are soothing or calming. 138 00:15:59,140 --> 00:16:06,550 So this detective work ahead of time can be really helpful and then adding cues to the person 139 00:16:06,550 --> 00:16:09,000 either from familiar people who can say, 140 00:16:09,000 --> 00:16:09,280 hey, 141 00:16:09,280 --> 00:16:14,900 I wonder if it would feel good for you to do this or to have it in the environment, 142 00:16:14,900 --> 00:16:17,460 like a list or a box of items... 143 00:16:19,840 --> 00:16:27,240 Ideally the individual will have a sense over time of when a dysegulated state is coming on. 144 00:16:27,250 --> 00:16:28,660 So for example, 145 00:16:28,670 --> 00:16:37,060 if they lean toward starting to shut down or disassociate during difficult times or difficult conversations, 146 00:16:37,470 --> 00:16:43,520 they may start to catch themselves when their mind starts to go blank and they're talking to somebody. 147 00:16:44,540 --> 00:16:49,630 They also may have a sense over time of when this happens at home, 148 00:16:49,670 --> 00:16:55,320 it often helps me to do these kinds of things-- and when it happens in public, 149 00:16:55,330 --> 00:16:57,860 I've learned to do these other kinds of things. 150 00:16:59,140 --> 00:17:02,700 Being able to recognize dysregulation, know 151 00:17:02,700 --> 00:17:11,670 what you can do to help recenter, and getting to the point where you can communicate briefly to other people around you about what's happening... 152 00:17:11,680 --> 00:17:21,090 that can really add another layer of growing into maturity with these strategies ...That, as we communicate with other people, 153 00:17:21,100 --> 00:17:25,370 we can really stabilize these situations and these relationships. 154 00:17:25,380 --> 00:17:26,850 So for example, 155 00:17:26,850 --> 00:17:33,770 if you are becoming dysregulated during a meeting at work, and you realize that you're headed for a meltdown, 156 00:17:34,140 --> 00:17:40,530 it's generally very acceptable and professional in most work settings to step out... 157 00:17:40,540 --> 00:17:49,670 if you offer some type of explanation...  walking out of the room without explanation would not be considered okay or professional, 158 00:17:50,040 --> 00:17:55,250 but someone may use a very generic explanation and just say, 159 00:17:55,260 --> 00:17:55,870 "You know, 160 00:17:55,880 --> 00:17:58,340 I'm starting to not feel very well, 161 00:17:58,340 --> 00:18:13,360 I just need to get some air" or the person may have the kind of relationship with their boss where they've discussed some things already that helped them in intense situations at work. 162 00:18:14,940 --> 00:18:17,480 So in that case the person might say, 163 00:18:17,480 --> 00:18:17,840 "You know, 164 00:18:17,840 --> 00:18:21,450 I can see that I'm really feeling passionate about this topic, 165 00:18:21,840 --> 00:18:29,660 but I also want to be able to hear what you have to say and ways in what your opinion is different from mine. 166 00:18:29,670 --> 00:18:34,050 And I think I just need to step out to regroup for a few minutes," 167 00:18:34,740 --> 00:18:45,960 or if the strategy has to do with reducing the intensity of the conversation and a few minutes of stepping out is probably not going to be enough to regulate. 168 00:18:46,440 --> 00:18:48,310 They may say to their boss, 169 00:18:48,320 --> 00:18:48,720 "You know, 170 00:18:48,720 --> 00:18:52,890 I can feel myself getting really passionate about my own opinion, 171 00:18:52,890 --> 00:18:55,920 but I know that your perspective is important too, 172 00:18:55,920 --> 00:19:08,140 and I'm wondering if I could take time to gather my thoughts and to send them to an email so that I've kind of processed them and they're organized. 173 00:19:08,260 --> 00:19:11,440 I'd really love for you to hear them, 174 00:19:11,440 --> 00:19:14,320 but I also would like to read your thoughts. 175 00:19:14,320 --> 00:19:15,960 If you could send them to me. 176 00:19:15,970 --> 00:19:32,670 I find that a lot of times when I'm processing information that's really important to me having time to mull it over and having some time to get organized with my thoughts before a discussion with my colleagues really helps. 177 00:19:33,940 --> 00:19:39,360 Then I would like to come back and talk more about our opinions and talk them through." 178 00:19:40,340 --> 00:19:51,640 Sometimes the addition of time to process and removing this face to face intensity of the moment can help a person stay centered while still communicating about difficult things. 179 00:19:51,650 --> 00:19:55,330 So this could be a technique that's done in a workplace, 180 00:19:55,340 --> 00:20:06,600 in a school setting, or even just as part of a friendship or partnership when you're both having this intense conversation about something that you disagree on. 181 00:20:06,600 --> 00:20:07,970 But it's very important, 182 00:20:07,970 --> 00:20:08,290 you know, 183 00:20:08,290 --> 00:20:17,670 being able to have time and space to process before you come back together can help stabilize that interaction. 184 00:20:20,940 --> 00:20:35,920 It especially helps if you can let the other person know that the reason you're stepping back is because you do want to be able to process differing opinions and that their their opinion is important to you, 185 00:20:35,920 --> 00:20:38,430 even though you disagree with it. 186 00:20:38,440 --> 00:20:46,530 Um that it kind of helps show that you want there to be a good exchange. 187 00:20:46,540 --> 00:20:48,000 If you're walking out, 188 00:20:48,000 --> 00:20:52,110 sometimes people feel like they're not even committed to a good exchange. 189 00:20:52,110 --> 00:20:54,950 So what ... what good is this partnership? 190 00:20:54,960 --> 00:21:09,600 But if you can say it's because I really want to process things well, and I really want to hear your thoughts even though I can feel myself getting too passionate about the topic right now. 191 00:21:09,610 --> 00:21:16,260 Sometimes that puts in perspective that this is someone that does want to make this exchange of ideas work. 192 00:21:18,540 --> 00:21:28,670 That is a summary of someone who has gone on a long journey of figuring out what it feels like to them when they're dysregulated ... 193 00:21:29,440 --> 00:22:07,960 what kinds of things they can do to try to salvage that interaction and recenter in particular settings, and how they can communicate that to other people with experience and detective work and being mindful about kind of planning and sorting these things out the individual and those around him can develop communication about the strategies that work best and knowing these things and communicating about them can stabilize different interactions over time. 194 00:22:08,640 --> 00:22:14,960 So we've talked now about several ways to approach periods of dis regulation. 195 00:22:15,340 --> 00:22:31,060 One thing I will end up emphasizing here is that these are all general statement and of course there are also exceptions to every general principle and I can't address every type of situation, 196 00:22:31,140 --> 00:22:38,260 but all I can say certainly is that these are general things I've noticed that do help or don't help. 197 00:22:40,120 --> 00:22:44,630 Focus should also always be on the person's safety in that moment, 198 00:22:44,630 --> 00:22:47,690 if there's something unsafe that needs to be stopped, 199 00:22:47,700 --> 00:22:52,260 that's really something to immediately intervene with. 200 00:22:53,340 --> 00:23:01,460 But in general reducing stimuli and demand and increasing soothing inputs can be really helpful. 201 00:23:03,840 --> 00:23:12,810 I don't want to leave the impression that I don't think the autistic individuals should ever experience challenge in his or her life. 202 00:23:12,810 --> 00:23:36,960 So we all benefit from this appropriate level of challenge with support and that helps us grow, and the topic during this episode happens to relate to whether adding challenge and demand to the individual while they're dysregulated is generally fruitful ... and that's when I think it's just the wrong timing. 203 00:23:37,440 --> 00:23:48,800 So challenge should be added when the individual is fairly centered and regulated, and that's why working on regulation first can be beneficial -- 204 00:23:48,800 --> 00:23:54,860 so that goals with some challenge can be added once regulation has improved. 205 00:23:57,640 --> 00:24:05,670 Now our next episode will be the final in our four episode series on regulation and dysregulation. 206 00:24:07,140 --> 00:24:09,360 In the 4th and final episode, 207 00:24:09,360 --> 00:24:19,670 we'll talk about how to recognize when someone is trying to regulate themselves, and what to do and not do in those situations. 208 00:24:20,740 --> 00:24:28,060 So thank you for joining me, and I hope to catch you next time for the final episode of the series on regulation.    

Individuals on the spectrum who are going through a season of struggle often describe episodes of dysregulation (not feeling centered in their alertness, attention, or emotions). Join Dr. Regan for this first episode in a 4 part series on dysregulation to learn how to recognize a dysregulated state and why these states are often misinterpreted or mishandled.    The Alert Program: Your Best Self The Testing Psychologist podcast: Best of 2021 Zur Institute webinar Feb 2022: ASD Interventions Across the Lifespan   Dr. Regan's Resources Book: Understanding Autism in Adults and Aging Adults, 2nd ed Audiobook Book: Understanding Autistic Behaviors Autism in the Adult website Resources for Clinicians   Episode Transcript 1 00:00:00,340 --> 00:00:17,760 Welcome to autism in the adult podcast. 2 00:00:17,770 --> 00:00:18,750 I'm your host, 3 00:00:18,760 --> 00:00:20,290 Dr Theresa Regan, 4 00:00:20,300 --> 00:00:22,560 an adult neuropsychologist. 5 00:00:22,640 --> 00:00:28,050 I specialize in brain behavior relationships for those 14 and older. 6 00:00:28,540 --> 00:00:35,050 I'm the parent of an amazing teen on the autism spectrum and a certified autism specialist. 7 00:00:35,740 --> 00:00:38,200 I am deeply grateful to bring validation, 8 00:00:38,200 --> 00:00:42,850 hope and purpose to individuals and their families living on the autism spectrum. 9 00:00:43,540 --> 00:00:45,430 With this mission at its core, 10 00:00:45,440 --> 00:00:52,580 I founded and currently direct the OsF healthcare adult diagnostic autism center in central Illinois. 11 00:00:52,590 --> 00:01:10,560 My books include Understanding Autism in Adults and Aging Adults and Understanding Autistic Behaviors. For more information and to join my online community for free visit www.adultandgeriatricautism.com. 12 00:01:11,440 --> 00:01:13,550 Please join me in helping individuals, 13 00:01:13,560 --> 00:01:18,550 couples and families thrive while living life on the autism spectrum. 14 00:01:20,540 --> 00:01:24,460 Hello and welcome to this episode of Autism in the Adult. 15 00:01:25,240 --> 00:01:29,460 And I'm glad you joined me for this first episode of 2022. 16 00:01:30,240 --> 00:01:35,050 I just want to highlight a few things that have gone on recently. 17 00:01:35,050 --> 00:01:44,680 I was happy to be named in the episode Best Of for 2021 that The Testing Psychologist produces. 18 00:01:44,680 --> 00:01:46,520 This is a podcast by Dr. 19 00:01:46,520 --> 00:01:47,550 Jeremy Sharp 20 00:01:47,940 --> 00:02:02,790 talking about issues related to assessment in psychology, and my episode in august Identifying Adult Autism was the second downloaded episode of the season. 21 00:02:02,800 --> 00:02:03,290 So, 22 00:02:03,290 --> 00:02:14,720 I was so honored to be among many very accomplished people talking about important topics and assessment of Autism in the adult was right up there at # two. 23 00:02:14,720 --> 00:02:14,990 So, 24 00:02:14,990 --> 00:02:16,900 I was happy about that. 25 00:02:16,900 --> 00:02:19,920 I'll put the link below if you or someone you know 26 00:02:19,920 --> 00:02:22,800 would like to learn more about assessment. 27 00:02:23,340 --> 00:02:29,160 This episode of the testing psychologist was produced for clinicians. 28 00:02:29,160 --> 00:02:36,450 So people who are trying to understand how to assess and evaluate autistic characteristics in their clients. 29 00:02:37,040 --> 00:02:44,660 I also have an exciting opportunity for clinicians coming up in February on the 26th of 2022. 30 00:02:45,100 --> 00:02:50,030 This is a two hour live interactive webinar with Zur Institute. 31 00:02:50,040 --> 00:02:50,480 And again, 32 00:02:50,480 --> 00:02:52,330 I'll put the link below. 33 00:02:52,840 --> 00:02:58,210 This is entitled Autism Spectrum Disorder: Interventions Across the Lifespan. 34 00:02:58,640 --> 00:03:05,150 So not everyone on the spectrum will need support or intervention at all seasons of life. 35 00:03:05,540 --> 00:03:26,890 But for those who are clinicians, we have people come to us asking for assistance during a tough period or about a difficult thing that they're grappling with and to understand the neurology of the client is so important to drive the strategies that will be most helpful for them. 36 00:03:27,140 --> 00:03:42,770 So I'll be talking specifically about strategies that are likely to help the autistic client and ... things that we typically do in a counseling sessions, will highlight those that wouldn't be likely to be as helpful. 37 00:03:42,770 --> 00:03:45,730 So that's February 26, 38 00:03:45,730 --> 00:03:46,340 2022. 39 00:03:46,350 --> 00:03:48,850 And I'll go ahead and put that link below. 40 00:03:51,540 --> 00:03:55,260 Today's topic is dysregulation. 41 00:03:55,840 --> 00:04:00,240 I envision this to be the first episode in a four part series. 42 00:04:00,250 --> 00:04:04,160 And so today we're going to talk about what this regulation is and 43 00:04:04,170 --> 00:04:06,060 how to recognize it. 44 00:04:06,840 --> 00:04:09,290 In the next episode of the series, 45 00:04:09,290 --> 00:04:15,880 we're going to talk about how to reduce the amount of dysregulation that someone experiences. 46 00:04:15,890 --> 00:04:20,550 The third episode will be how to recover from dysregulation. 47 00:04:21,040 --> 00:04:27,820 The fourth will be how can you recognize when someone is trying to regulate. 48 00:04:27,830 --> 00:04:31,350 So someone around us maybe trying to regulate, 49 00:04:31,360 --> 00:04:35,650 and we may criticize them or ask them to stop it, 50 00:04:35,660 --> 00:04:37,230 but there would be other, 51 00:04:37,230 --> 00:04:41,050 more impactful ways to get a good outcome. 52 00:04:41,940 --> 00:04:44,020 You'll understand more about what I mean 53 00:04:44,020 --> 00:04:48,750 when we start to talk about this thing called regulation and dysregulation, 54 00:04:50,440 --> 00:05:05,650 Everyone's brain and nervous system are in charge of helping us to stay centered with various things and part of what we stay centered with has to do with alertness. 55 00:05:05,660 --> 00:05:08,070 Can we wake up in the morning? 56 00:05:08,070 --> 00:05:11,690 Can we calm down and fall asleep at night? 57 00:05:11,700 --> 00:05:16,830 That's kind of our ... the tone of our alertness, 58 00:05:16,940 --> 00:05:18,760 our brain helps us with that. 59 00:05:19,440 --> 00:05:23,900 We also have this attention regulation. 60 00:05:23,900 --> 00:05:31,520 So our brain is supposed to help us focus on what's most important and just release and let go 61 00:05:31,520 --> 00:05:38,670 things that are no longer important or uh you know... if the information in our environment has changed. 62 00:05:38,680 --> 00:05:46,990 So we need to switch gears and attend to something else... so our brain helps us regulate alertness and attention. 63 00:05:47,740 --> 00:05:53,190 So when we talk about these two aspects of regulation (alertness and attention), 64 00:05:53,740 --> 00:06:05,050 there is an analogy that is commonly used with the occupational therapists that often try to help people learn how to regulate better. 65 00:06:05,540 --> 00:06:09,560 And that analogy is "how is your motor running today?" 66 00:06:10,340 --> 00:06:14,560 So if your motor is running sluggish, 67 00:06:15,340 --> 00:06:17,420 you are tired, 68 00:06:17,470 --> 00:06:20,370 you may describe yourself as feeling lazy, 69 00:06:20,370 --> 00:06:21,540 unmotivated. 70 00:06:21,540 --> 00:06:22,910 I can't get going, 71 00:06:22,910 --> 00:06:24,250 I feel sleepy. 72 00:06:24,730 --> 00:06:31,750 I'm just a bump on a log ... that is when your motor is running too low. 73 00:06:32,640 --> 00:06:35,620 Your motor can also sometimes run too high. 74 00:06:36,140 --> 00:06:41,260 It's revved up and it's not in that just right state. 75 00:06:41,640 --> 00:06:47,250 And a motor that's too high will be someone who is hyper, restless, 76 00:06:47,640 --> 00:06:48,290 angry, 77 00:06:48,300 --> 00:06:49,240 agitated, 78 00:06:49,250 --> 00:06:50,070 anxious, 79 00:06:50,070 --> 00:06:54,700 that extra alertness that we just don't need all the time. 80 00:06:54,800 --> 00:06:56,970 This high level of alertness. 81 00:06:57,440 --> 00:07:07,360 Um that is the motor that is running too high, and we would like our motor to be running just right. 82 00:07:09,240 --> 00:07:13,370 The Alert Program is one program you might want to investigate. 83 00:07:13,380 --> 00:07:19,830 It's run by occupational therapists who are very experienced in regulation strategies. 84 00:07:19,840 --> 00:07:23,160 And I have a link to the alert program below. 85 00:07:23,640 --> 00:07:23,960 Now, 86 00:07:23,960 --> 00:07:28,870 they train occupational therapists in strategies to help others. 87 00:07:28,870 --> 00:07:41,060 But they also have a new online program called Your Best Self that people can investigate to figure out regulation strategies for themselves. 88 00:07:43,040 --> 00:07:43,540 Now, 89 00:07:43,540 --> 00:07:46,450 we've talked about alertness and attention. 90 00:07:46,840 --> 00:07:51,280 There's also this area of emotional regulation. 91 00:07:51,290 --> 00:07:54,160 So when we have a strong emotion, 92 00:07:54,170 --> 00:07:58,700 our brain should help us make sense of it. 93 00:07:58,710 --> 00:08:06,810 Our brain should help us center it and help it be present in our mind that we're aware of it, 94 00:08:06,810 --> 00:08:08,400 but it's not overwhelming, 95 00:08:08,410 --> 00:08:10,070 it doesn't hijack us, 96 00:08:10,080 --> 00:08:11,770 it doesn't take control of us, 97 00:08:11,780 --> 00:08:13,550 It doesn't hurt other people. 98 00:08:13,560 --> 00:08:20,160 And that would be regulation or dysregulation of emotional experiences. 99 00:08:22,440 --> 00:08:28,060 When we talk about a dysregulated state in the area of emotions, 100 00:08:28,120 --> 00:08:31,560 we can talk about a fight reaction, 101 00:08:32,240 --> 00:08:36,950 flight reactions or freeze reactions. 102 00:08:38,040 --> 00:08:56,000 So a fight reaction in the area of emotions is that this very strong emotional experience ... comes in and the person feels so overwhelmed that there is this externalized expression of distress. 103 00:08:56,640 --> 00:09:01,950 And what I mean by that is I would include meltdowns in this category. 104 00:09:01,960 --> 00:09:04,170 I would include outbursts, 105 00:09:04,180 --> 00:09:05,320 crying spells. 106 00:09:05,320 --> 00:09:08,480 I even include, even though it's not fight, 107 00:09:08,490 --> 00:09:14,960 but I'd like to capture all the externalized reactions in this category. 108 00:09:15,440 --> 00:09:18,050 That I am going to argue with you. 109 00:09:18,050 --> 00:09:19,950 I am going to explode. 110 00:09:19,960 --> 00:09:23,230 And you can picture this volcano, 111 00:09:23,240 --> 00:09:23,820 right? 112 00:09:23,830 --> 00:09:29,480 that is just to the point of being uncontained and out comes 113 00:09:29,480 --> 00:09:41,650 this spewing of tears or yelling or throwing things... so that is the externalized sign of a dysregulated state. 114 00:09:41,920 --> 00:09:43,890 In the area of emotions, 115 00:09:46,040 --> 00:09:52,660 flight is another reaction that someone could have when they are dysregulated. 116 00:09:53,340 --> 00:09:58,650 This could look like ... I'm going to walk away from you and quit this conversation. 117 00:09:59,040 --> 00:10:04,460 I'm going to spend all day in my room doing things I enjoy but not interacting with you. 118 00:10:05,140 --> 00:10:08,760 I'm going to quit school and do home schooling. 119 00:10:08,760 --> 00:10:10,450 I'm going to quit this job. 120 00:10:10,940 --> 00:10:15,560 I'm going to quit this relationship because it's so up and down. 121 00:10:15,560 --> 00:10:17,000 It's like a roller coaster. 122 00:10:17,000 --> 00:10:18,650 It's just too intense for me. 123 00:10:18,650 --> 00:10:20,000 It's too unpredictable. 124 00:10:20,040 --> 00:10:21,620 I have to quit this, 125 00:10:21,630 --> 00:10:23,060 I have to escape, 126 00:10:23,440 --> 00:10:28,630 I have to withdraw. Then there are freeze reactions. 127 00:10:28,630 --> 00:10:32,150 So this is the time when you're physically present, 128 00:10:32,160 --> 00:10:34,980 but you're not psychologically present, 129 00:10:34,990 --> 00:10:36,710 that your brain shuts down, 130 00:10:36,720 --> 00:10:46,300 Someone might say the veil just seemed to go over his eyes and I just knew he was there but not processing what was happening during that time, 131 00:10:46,300 --> 00:10:47,720 someone may say, 132 00:10:47,730 --> 00:10:48,200 you know, 133 00:10:48,200 --> 00:10:49,320 I hear what you're saying, 134 00:10:49,320 --> 00:10:52,460 but my mind is blank and I don't know what to respond. 135 00:10:52,470 --> 00:10:54,140 That's a freeze reaction. 136 00:10:54,150 --> 00:10:59,010 So it signals that the person is dysregulated. 137 00:10:59,010 --> 00:11:04,260 They're having difficulty being fully present in the midst of the strong emotion. 138 00:11:05,940 --> 00:11:28,150 Another part of the freeze reaction can be what we call a somatization response to stress and that just means that the stress is not able to come into the person's emotional awareness and kind of sit there and be recognized and felt. 139 00:11:28,740 --> 00:11:30,300 And so the body says, 140 00:11:30,300 --> 00:11:30,910 hey, 141 00:11:30,910 --> 00:11:35,150 I will help you escape from this really difficult emotion. 142 00:11:35,160 --> 00:11:45,140 I will process the stress for you so that you don't have to feel this deep fear or this deep pain or anguish or anger. 143 00:11:45,150 --> 00:11:52,690 I'll just process that stress right through the physical system in these cases, 144 00:11:52,700 --> 00:11:56,390 the symptom which could be a staring spell. 145 00:11:56,400 --> 00:11:59,740 It could be something that looks like an electrical seizure, 146 00:11:59,740 --> 00:12:01,350 but it's really not. 147 00:12:02,040 --> 00:12:08,600 It could be something like a loss of memory for chunks of time or days or weeks, 148 00:12:09,040 --> 00:12:17,000 it could be a weakness where the person feels like their limbs are weak or paralyzed. 149 00:12:17,010 --> 00:12:19,860 So it could be a variety of things like that. 150 00:12:20,240 --> 00:12:24,340 Physical systems also could include issues of pain, 151 00:12:24,350 --> 00:12:27,600 issues of stomach distress, 152 00:12:27,600 --> 00:12:28,470 headaches, 153 00:12:28,480 --> 00:12:30,550 so lots of different things. 154 00:12:30,550 --> 00:12:35,960 Lots of different physical systems can process stress for us. 155 00:12:36,340 --> 00:12:39,570 And these symptoms, 156 00:12:39,570 --> 00:12:42,760 these physical expressions are real. 157 00:12:43,140 --> 00:12:46,580 They are not produced by the individual, 158 00:12:46,580 --> 00:12:47,850 They're not feigned, 159 00:12:47,860 --> 00:12:50,290 they're not exaggerated, 160 00:12:50,290 --> 00:12:51,760 they're not used to manipulate, 161 00:12:51,760 --> 00:12:56,250 they are really experienced and they are distressing in themselves. 162 00:12:56,840 --> 00:13:04,260 But they do help the individual ... kind of shield the individual from having to process in their awareness 163 00:13:04,260 --> 00:13:05,660 such strong emotion. 164 00:13:07,340 --> 00:13:11,560 And it can also include what we call dissociation. 165 00:13:11,940 --> 00:13:17,410 So I feel like I'm not even in my own body right now, 166 00:13:17,420 --> 00:13:22,620 I don't feel like I even know who I am or what's reality and what's not reality. 167 00:13:22,630 --> 00:13:25,550 I don't remember parts of the day, 168 00:13:25,550 --> 00:13:28,090 I feel disconnected from myself. 169 00:13:28,100 --> 00:13:34,790 So this dissociation can also be this form of a freeze state, 170 00:13:34,800 --> 00:13:36,550 a dysregulated state. 171 00:13:38,040 --> 00:13:39,200 So in summary, 172 00:13:39,200 --> 00:13:48,820 I'm talking about regulation as being that centered state that the brain should help us maintain, 173 00:13:48,840 --> 00:13:58,410 its that state where you're just right with alertness, with attention, and with emotional centeredness, 174 00:13:59,040 --> 00:14:03,080 you're not too low and sluggish and out of it, 175 00:14:03,540 --> 00:14:05,090 you're not too high, 176 00:14:05,090 --> 00:14:06,620 being overwhelmed, 177 00:14:06,620 --> 00:14:08,460 restless or agitated, 178 00:14:09,840 --> 00:14:13,420 You're not in a fight, flight, or freeze mode, 179 00:14:13,840 --> 00:14:17,010 you're psychologically present, 180 00:14:17,020 --> 00:14:23,520 You're physically present and you can maintain some sense of centeredness, 181 00:14:23,520 --> 00:14:25,060 you're not overwhelmed. 182 00:14:26,640 --> 00:14:27,040 Now, 183 00:14:27,050 --> 00:14:33,850 every human who lives life has periods with where they are dysregulated. 184 00:14:33,860 --> 00:14:35,750 It's a very human thing, 185 00:14:35,760 --> 00:14:36,320 right? 186 00:14:36,330 --> 00:14:52,450 We're living in a life day to day that is sometimes very difficult to navigate and we'll have periods of times where we lose it or where we go in our room and shut the door or we just freeze. 187 00:14:52,840 --> 00:14:58,170 And that's just a very human thing. For individuals on the spectrum, 188 00:14:58,180 --> 00:15:06,440 that nervous system pathway through the center and the front of the brain is particularly involved for them 189 00:15:06,440 --> 00:15:10,760 and it also is particularly in charge of regulation. 190 00:15:11,240 --> 00:15:26,240 So everyone on the spectrum will have difficulty in some way with getting to a regulated state and they'll probably have seasons of life where that is much more achievable, 191 00:15:26,250 --> 00:15:29,940 but seasons where... if anything gives them trouble, 192 00:15:29,950 --> 00:15:32,550 it very well may be the issue of regulation. 193 00:15:34,840 --> 00:15:40,860 That is why we talk about regulation on this program for Autism in the Adult. 194 00:15:41,240 --> 00:15:49,970 Because oftentimes when people are seeking assistance or they are in pain or there's something that they're struggling with... 195 00:15:49,980 --> 00:15:50,570 Uh, 196 00:15:50,580 --> 00:15:55,960 it very well may be in the area of getting to a regulated state. 197 00:15:58,230 --> 00:15:58,570 Now, 198 00:15:58,570 --> 00:16:06,930 one thing to understand is that the type of dysregulation that the individual shows can be somewhat specific to them. 199 00:16:06,930 --> 00:16:09,470 We kind of have our, 200 00:16:09,480 --> 00:16:12,950 our general ways of handling things. 201 00:16:12,960 --> 00:16:13,480 Um, 202 00:16:13,480 --> 00:16:20,970 and so one thing I recommend is knowing what you as an individual, or this person that you love, 203 00:16:20,980 --> 00:16:30,950 what they lean toward when they're dysregulated, because one thing we want to do is recognize what dysregulation looks like in this person. 204 00:16:32,840 --> 00:16:34,960 So for example, 205 00:16:35,640 --> 00:16:47,590 the person who is exploding and ranting because their usual parking space at work is being used by someone else, 206 00:16:47,600 --> 00:16:56,300 and the person at the entryway to work gave them a hard time because they don't have their badge on, and on the way to work 207 00:16:56,300 --> 00:16:59,660 they couldn't get the gas that they typically like to get... 208 00:17:00,040 --> 00:17:02,690 So they're feeling very uncentered, 209 00:17:02,690 --> 00:17:08,260 They're feeling off, and for this particular person when they're uncentered, 210 00:17:08,260 --> 00:17:11,270 they tend to get elevated. 211 00:17:12,140 --> 00:17:16,490 Um and tend to externalize that stress. 212 00:17:17,940 --> 00:17:19,860 So for this person, 213 00:17:20,240 --> 00:17:22,830 this outburst that they may have, 214 00:17:22,830 --> 00:17:26,560 maybe they come in and they have an outburst toward their colleague or something. 215 00:17:26,940 --> 00:17:32,220 Well that is often nothing to do with the colleague in particular. 216 00:17:32,220 --> 00:17:33,680 It just may be that, 217 00:17:33,690 --> 00:17:34,060 wow, 218 00:17:34,060 --> 00:17:36,050 this is a sign, 219 00:17:36,060 --> 00:17:37,810 this is a clue. 220 00:17:37,820 --> 00:17:40,860 This person is really off center. 221 00:17:40,870 --> 00:17:45,100 They're struggling to feel in that just right state. 222 00:17:45,110 --> 00:17:46,480 And for this person, 223 00:17:46,480 --> 00:17:48,190 when they struggle to feel that way, 224 00:17:48,190 --> 00:17:51,960 it happens to be that it comes out as irritability. 225 00:17:53,740 --> 00:17:58,560 Another person may lean toward quieter reactions. 226 00:17:59,140 --> 00:18:00,930 So this person, 227 00:18:00,940 --> 00:18:06,120 let's say we have another individual who experiences the very same thing, 228 00:18:06,130 --> 00:18:17,590 but this person comes in quietly, walks to their office and shuts the door, and doesn't open their office door as typical. 229 00:18:17,600 --> 00:18:24,080 Uh maybe they're in there for three hours without opening it, when typically they would go get some coffee, 230 00:18:24,080 --> 00:18:26,460 maybe say good morning to their coworkers. 231 00:18:26,840 --> 00:18:27,760 So wow, 232 00:18:27,760 --> 00:18:30,350 they've really retreated and become quiet. 233 00:18:31,840 --> 00:18:45,350 Now the difference between the fight reaction and the flight reaction is that one is very noticeable and everyone around that first person is like, 234 00:18:45,350 --> 00:18:45,780 wow, 235 00:18:45,780 --> 00:18:50,600 stay away from Joe today because he got up on the wrong side of the bed. 236 00:18:50,600 --> 00:18:51,390 He's really, 237 00:18:51,400 --> 00:18:52,860 he's really irritable. 238 00:18:53,540 --> 00:19:03,940 Um Now they may misunderstand the reason for that and they may not like the fact that he is loud and irritable. 239 00:19:03,950 --> 00:19:05,080 So they may not say, 240 00:19:05,090 --> 00:19:07,490 oh he's really in a dysregulated state, 241 00:19:07,490 --> 00:19:08,450 that poor guy. 242 00:19:08,940 --> 00:19:11,940 Um but they do notice it. 243 00:19:11,950 --> 00:19:16,310 They notice he's off center. On the other hand, 244 00:19:16,310 --> 00:19:21,500 for the person who reacts with flight to being dysregulated, 245 00:19:21,510 --> 00:19:23,580 they are often missed, 246 00:19:23,590 --> 00:19:24,250 right? 247 00:19:24,250 --> 00:19:32,550 So they may spend all morning in their office and either nobody will notice or they might misinterpret it and say, 248 00:19:33,420 --> 00:19:33,910 you know, 249 00:19:33,910 --> 00:19:35,350 she's kind of stuck up. 250 00:19:35,360 --> 00:19:37,130 She's just in her own little world. 251 00:19:37,130 --> 00:19:47,160 She doesn't socialize ... when really both the first person and the second person are in a state of dysregulation, 252 00:19:47,160 --> 00:19:49,160 which means that they are struggling. 253 00:19:50,240 --> 00:19:51,460 They're not doing well, 254 00:19:52,840 --> 00:19:58,660 But the quieter one may not be noticed and the louder one may be misunderstood. 255 00:20:02,140 --> 00:20:14,430 Now we also have freeze, of course, and let's say that there's a third individual and they have the exact same thing happen and yet they're walking into work... 256 00:20:14,450 --> 00:20:19,560 and someone asked them a question about a recent project. 257 00:20:19,940 --> 00:20:21,890 They can't think of the details. 258 00:20:21,890 --> 00:20:25,960 They're really feeling shut down and kind of out of their own system. 259 00:20:26,340 --> 00:20:36,770 And they're also realizing that they ... their stomach doesn't feel that well and they are starting to get some chronic pain in their muscles that they're feeling. 260 00:20:37,140 --> 00:20:41,060 Uh they just really don't physically feel well. 261 00:20:41,940 --> 00:20:49,760 Um Now this may be their state of dysregulation... that I'm feeling disconnected. 262 00:20:50,140 --> 00:20:56,160 It's hard to think through things and they may even say it's probably because of my headache. 263 00:20:56,170 --> 00:21:01,860 I can't think clearly because of my headache or my stomach ache and then they may go home for the day. 264 00:21:03,140 --> 00:21:03,760 Again, 265 00:21:03,760 --> 00:21:07,990 this is actually... in this scenario I'm describing... 266 00:21:07,990 --> 00:21:10,890 this is the same thing. 267 00:21:10,890 --> 00:21:12,500 It's dysregulation. 268 00:21:12,760 --> 00:21:24,860 It looks different, but it's the state of having things happen in your day that threw you off center and you're really struggling to know how to get back to center. 269 00:21:25,740 --> 00:21:31,050 And so all three of these people may look very different, 270 00:21:31,320 --> 00:21:33,860 but they're all struggling with dysregulation. 271 00:21:34,210 --> 00:21:43,050 Now one of the interesting things can be... if these people were sent to get help for their dysregulation. 272 00:21:43,740 --> 00:21:57,450 The first one might be sent to anger management training and perhaps he'd be diagnosed with something like bipolar because he has these swings of mood and regulation... 273 00:21:58,140 --> 00:22:13,490 Perhaps the second person goes for help and they coach her on social skills with colleagues and they tell her that as part of her job 274 00:22:13,490 --> 00:22:15,770 she really needs to speak up more, 275 00:22:15,840 --> 00:22:16,750 be a leader, 276 00:22:16,750 --> 00:22:20,340 be more engaged in the social milieu of the office. 277 00:22:20,540 --> 00:22:24,760 And so she's being coached on getting out there and maybe she, 278 00:22:24,770 --> 00:22:26,370 she gets a diagnosis, 279 00:22:26,370 --> 00:22:27,860 if she goes to a clinician, 280 00:22:27,870 --> 00:22:30,280 maybe she gets a diagnosis of anxiety, 281 00:22:30,280 --> 00:22:32,860 generalized anxiety or social anxiety. 282 00:22:34,340 --> 00:22:45,200 The third person goes to get help because they often leave work feeling cloudy in there thinking they have some staring spells, 283 00:22:45,200 --> 00:22:46,320 they feel disconnected, 284 00:22:46,320 --> 00:22:47,770 they feel physically ill. 285 00:22:48,440 --> 00:22:52,860 So they go to the doctor and they get diagnosed with chronic headaches, 286 00:22:52,860 --> 00:22:54,470 maybe fibromyalgia, 287 00:22:54,480 --> 00:23:10,470 maybe um some um digestive sensitivities... and I'm definitely not here to say that nobody has those diagnoses and physical issues and this person may as well... 288 00:23:10,480 --> 00:23:15,270 What I'm saying though is that for this hypothetical individual, 289 00:23:15,280 --> 00:23:16,950 it's just not that simple. 290 00:23:16,960 --> 00:23:32,940 We don't want to miss the internal struggle of it because... if we understood that those physical symptoms in that state of fogginess were at least worsened by some of this dysregulated state, 291 00:23:32,950 --> 00:23:33,240 you know, 292 00:23:33,240 --> 00:23:34,170 that trigger, 293 00:23:34,540 --> 00:23:45,460 we could help much more efficiently without adding medications that may make things worse or extra doctor's appointments or extra stress. 294 00:23:45,940 --> 00:23:46,780 Um, 295 00:23:46,790 --> 00:23:47,600 we could say, 296 00:23:47,600 --> 00:23:47,900 hey, 297 00:23:47,900 --> 00:23:48,590 you know what, 298 00:23:48,590 --> 00:23:51,370 when you are are off center, 299 00:23:51,370 --> 00:23:53,970 when you are stressed and things have gone wrong. 300 00:23:53,980 --> 00:23:58,510 I feel like your system responds in this way, 301 00:23:58,520 --> 00:24:05,590 you know that your stress is expressed through your system and that you feel disconnected. 302 00:24:05,590 --> 00:24:13,860 I'm wondering if we could hypothesize about that and see if there's a more efficient way to get you to feel more centered. 303 00:24:14,840 --> 00:24:18,100 And I bring this up for a couple of reasons. 304 00:24:18,220 --> 00:24:22,160 One is ... dysregulation is common on the spectrum. 305 00:24:23,640 --> 00:24:24,860 Two is, 306 00:24:25,440 --> 00:24:31,870 it can be misunderstood and depending on the type of dysregulation, 307 00:24:31,880 --> 00:24:39,660 it can add diagnoses to a person's list that aren't the most helpful diagnosis. 308 00:24:40,540 --> 00:24:41,090 Um, 309 00:24:41,100 --> 00:24:43,360 often autism isn't on there. 310 00:24:43,940 --> 00:24:44,510 Um, 311 00:24:44,520 --> 00:24:52,080 but there may be this gathering of diagnoses that fit the symptoms in the moment. 312 00:24:52,080 --> 00:24:54,040 Like they fit some characteristic in the moment, 313 00:24:54,040 --> 00:24:58,060 but they missed the big picture of why this person is dysregulated. 314 00:24:58,840 --> 00:24:59,200 You know, 315 00:24:59,200 --> 00:25:03,070 they're dysregulated because the rhythm of their day, 316 00:25:03,070 --> 00:25:18,260 the structure of their day that they depend on as an autistic individual... that that was disrupted and that triggered this dysregulated state and in them it happens to look like fight or flight or freeze. 317 00:25:19,240 --> 00:25:25,660 And so the topic of this podcast then is to introduce you to this concept of regulation. 318 00:25:27,840 --> 00:25:33,620 And when you see yourself or someone you love in a dysregulated state. 319 00:25:33,630 --> 00:25:38,030 And instead of telling them to get it together, 320 00:25:38,040 --> 00:25:39,290 calm down, 321 00:25:39,290 --> 00:25:40,380 get out there, 322 00:25:40,380 --> 00:25:41,360 get over it. 323 00:25:41,740 --> 00:25:42,370 Um, 324 00:25:42,700 --> 00:25:45,060 you can say to yourself, 325 00:25:45,440 --> 00:25:46,110 wow, 326 00:25:46,110 --> 00:25:48,230 this is dysregulation. 327 00:25:48,630 --> 00:25:49,890 I know what this is. 328 00:25:51,040 --> 00:25:52,580 For example, 329 00:25:53,140 --> 00:26:02,730 if my son, who's on the autism spectrum, comes home from school and drops his book bag on the floor and walks past me without saying hello, 330 00:26:02,810 --> 00:26:07,060 lays on the couch and puts a cover over his whole body... over his head. 331 00:26:08,040 --> 00:26:09,220 I could say, 332 00:26:09,230 --> 00:26:10,050 Hey, 333 00:26:10,540 --> 00:26:12,010 you didn't say hi to me. 334 00:26:12,020 --> 00:26:13,630 You threw your stuff on the ground, 335 00:26:13,630 --> 00:26:14,140 which you know, 336 00:26:14,140 --> 00:26:15,300 it doesn't go there! 337 00:26:15,420 --> 00:26:16,740 Come out here and make this 338 00:26:16,740 --> 00:26:17,070 right. 339 00:26:17,080 --> 00:26:18,610 This isn't a hotel for you. 340 00:26:18,610 --> 00:26:20,350 I'm not your maid. 341 00:26:21,340 --> 00:26:24,230 But, if I really wanted to get the best outcome, 342 00:26:24,240 --> 00:26:25,320 I would say, 343 00:26:25,330 --> 00:26:26,110 oh, 344 00:26:26,120 --> 00:26:27,300 I know what this is. 345 00:26:27,300 --> 00:26:29,740 This is a clue to me. 346 00:26:29,750 --> 00:26:30,650 This is data. 347 00:26:30,650 --> 00:26:31,860 This is information. 348 00:26:32,240 --> 00:26:50,200 This is telling me he is dysregulated ... so it's not going to help things for me to punish him for being dysregulated, and it's not going to help me to tell him to get better regulated because he already doesn't know how to do that. 349 00:26:50,200 --> 00:26:51,460 He's already overwhelmed. 350 00:26:52,240 --> 00:26:55,020 What would really help is if I said, 351 00:26:55,640 --> 00:26:56,080 wow, 352 00:26:56,080 --> 00:26:58,500 this is a flight reaction, 353 00:26:58,500 --> 00:26:58,750 right? 354 00:26:58,750 --> 00:26:59,690 He's hiding. 355 00:26:59,700 --> 00:27:00,950 He's withdrawing. 356 00:27:01,340 --> 00:27:02,760 He must have had a bad day. 357 00:27:02,760 --> 00:27:04,590 So then I can go in and say, 358 00:27:04,590 --> 00:27:05,060 hey, 359 00:27:05,540 --> 00:27:07,270 it looks like you had a rough day. 360 00:27:08,040 --> 00:27:16,290 I'm going to give you five minutes, and I'll be back and we can figure out what you need to get more centered. 361 00:27:17,540 --> 00:27:18,800 So number one, 362 00:27:18,810 --> 00:27:20,330 I'm recognizing it, 363 00:27:20,340 --> 00:27:21,460 which is important. 364 00:27:22,240 --> 00:27:22,590 You know, 365 00:27:22,590 --> 00:27:23,850 this isn't bad behavior. 366 00:27:23,850 --> 00:27:25,270 This is dysregulation. 367 00:27:25,840 --> 00:27:33,170 This is someone who is overwhelmed and uncentered and it's expressed as flight in this particular person. 368 00:27:34,640 --> 00:27:43,610 I'm also explaining to him what I see because ... you know when we're overwhelmed, we often don't know what we're feeling, 369 00:27:43,620 --> 00:27:45,510 we're just surviving, 370 00:27:45,510 --> 00:27:46,060 right? 371 00:27:46,540 --> 00:27:48,360 So I'm saying to him, 372 00:27:48,940 --> 00:27:49,550 wow, 373 00:27:49,560 --> 00:27:56,460 it looks like you've had a hard day and you probably need something to get centered. 374 00:27:57,740 --> 00:28:05,150 And then we're also introducing this topic that there are strategies that you could use to help yourself get centered. 375 00:28:05,150 --> 00:28:11,570 Let's figure out what those are and let me partner with you to get centered to get regulated. 376 00:28:12,040 --> 00:28:19,450 So in the future in this series we're going to talk about not only how to recognize it ... which we did today. 377 00:28:20,340 --> 00:28:29,400 We're going to talk about how to prevent episodes of dysregulation or you know lessen them as humans. 378 00:28:29,400 --> 00:28:34,550 We're going to have them but... not to have them so frequent that someone's not functioning well. 379 00:28:35,240 --> 00:28:46,160 How to recover from a dysregulated state, and how to recognize when someone around you is trying to regulate. 380 00:28:46,740 --> 00:28:48,400 Um for example, 381 00:28:48,400 --> 00:28:50,270 my son under the cover, 382 00:28:51,140 --> 00:28:54,300 his being under the cover is him trying to regulate. 383 00:28:55,040 --> 00:28:57,210 So I don't want to punish him for that. 384 00:28:57,220 --> 00:28:59,250 I don't want to chastise him for that. 385 00:28:59,260 --> 00:29:20,330 I want to recognize what that is and then help him have different strategies ...more effective strategies to regulate and to let him know that I come alongside him to do that with him because I also really commit that his well being is important and I'm on his side. 386 00:29:20,490 --> 00:29:21,060 You know, 387 00:29:21,070 --> 00:29:24,360 I want him to feel just right. 388 00:29:26,540 --> 00:29:39,670 I'm glad you joined me for this first episode of 2022 as we dive into this concept of regulation and dysregulation and the role that the nervous system has in helping us be centered. 389 00:29:40,140 --> 00:29:43,900 And I hope you'll check out the links below. 390 00:29:43,900 --> 00:29:46,180 I have the alert program link, 391 00:29:46,190 --> 00:29:52,250 I have the link to the Best Episode of the Testing Psychologist podcast in 2021. 392 00:29:52,260 --> 00:30:04,460 I'm happy, happy to be the number two episode... and I have a link to my upcoming webinar for clinicians about interventions for the autistic client, 393 00:30:04,840 --> 00:30:05,390 um, 394 00:30:05,400 --> 00:30:07,100 across the lifespan. 395 00:30:07,120 --> 00:30:12,460 So I will see you for next episode on how to prevent dysregulation.  

Take a moment to listen again to this holiday episode originally published in 2020. Celebrations may be draining or overwhelming to the individual on the spectrum. A little advanced awareness and planning can make a big difference! Enjoy ~   Dr. Regan's Resources Book: Understanding Autism in Adults and Aging Adults, 2nd ed Audiobook Book: Understanding Autistic Behaviors Autism in the Adult website Resources for Clinicians  

Autism is found at higher than expected rates in those with eating disorders or problematic eating patterns. Join Dr. Regan to hear about this link and why it is important to understand. article: Autism Spectrum Disorders in Eating Disorder Populations. A Systematic Review Dr. Regan's Resources Book: Understanding Autism in Adults and Aging Adults, 2nd ed Audiobook Book: Understanding Autistic Behaviors Autism in the Adult website Resources for Clinicians   article: Autism Spectrum Disorders in Eating Disorder Populations. A Systematic Review

In this episode, hear why repetitive fears about social interactions may chase the autistic individual and learn four strategies for escaping those worries.  Dr. Regan's Resources Book: Understanding Autism in Adults and Aging Adults, 2nd ed Audiobook Book: Understanding Autistic Behaviors Autism in the Adult website Resources for Clinicians