Is There a Difference Between a Diagnosis and an Autism Spectrum Disorder?

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:

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Hello everyone.

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This is Dr Theresa Regan and you are joining me for this episode of autism in the adult podcast.

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I am a neuropsychologist,

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the parent of a teen on the spectrum and I'm the director of a diagnostic autism clinic for adolescents,

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adults and aging adults in central Illinois.

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And we are in the third uh segment here of the series that we're calling,

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talking about autism,

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which has been a listener requested series and a really great topic to review together and discuss.

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The first episode was about personal journeys towards getting a diagnosis or receiving a diagnosis and how to communicate with others about that.

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The second episode was about navigating emotional atmospheres when talking about autism.

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For some reason,

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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.

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Uh and this episode is about talking about autism to others when its characteristics in them that you identify,

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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.

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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.

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I think this Foundation may at times be something that you need a way of verbalizing.

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If you're going to bring up the topic to others.

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This may help some of you.

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It may be old hat for some of you.

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Um But it'll be after we review that foundational kind of information that I talk about.

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Some ways to approach people and ways to talk about the topic or introduced the topic.

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So when we talk about autism,

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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.

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What autism is is a neuro behavioral developmental condition that's neurologic.

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Uh So what it means is that the brain,

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because it's in charge of our thinking skills are academic skills are motor coordination,

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our emotions,

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our personality structure,

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our behavioral patterns.

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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.

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Um Others are born with an unusual pattern of neurological wiring and that's what this is.

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So it's a physical state and research at this point shows us that it's largely driven by the genetic code,

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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.

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Sometimes for the individuals with developmental differences,

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They have a few um atypical areas in their body.

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So one person might have a heart valve problem from birth.

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That's a congenital difference and may have autism.

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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,

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they're born with them are also on the autism spectrum.

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And the reason for that is just that this is a reflection of biology of how the person developed and came together before birth,

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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.

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So for me,

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behavior has to do with communication and the establishment of relationships and repetitious behavioral patterns and um reacting to the sensory environment.

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So all of those are neuro behavioral characteristics.

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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.

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It's really organized by pattern and pathway and nuclei and location where,

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you know,

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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.

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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.

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They will check all these kinds of things that the brain is in charge of.

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So they'll check the person's vision,

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they'll check the person's speech,

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their ability to find words that they want to say.

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They'll check the person's comprehension of speech.

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They'll watch the person walk,

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they'll check their strength and their reflexes.

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And the reason they do this is that it tells them something about what part of the brain might be struggling.

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Because we know for example,

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that in general the right side of the body is,

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is controlled uh in strength,

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in that muscle strength,

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by the left side of the brain.

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And so if the person's presenting with right sided weakness,

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there may be a left side of the brain issue,

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But it gives you this sense that when we see clinical signs,

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we can make conclusions about pathways and locations in the brain.

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The same is true when we look at neuro behavioral patterns.

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The reason I bring this up is that I think it gives meaning and cohesion to this concept of autism.

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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,

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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.

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So that concept of the anatomy,

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the wiring being reflected in the cohesion of these behavioral differences.

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To me,

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that adds meaning to it.

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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.

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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.

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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.

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Now this gets to be complex because we then have to say,

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well,

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when are we going to call it autism?

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Because there will be these um characteristics here and there um that are noticeable.

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But when do we actually give it that whole name?

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So this is the same process that the scientific community goes through with?

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When do we call something dyslexia?

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Or when do we call something dementia?

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When do we call this?

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Alzheimer's dementia versus Lewy body dementia.

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So there are these distinctions that we're trying to make that are difficult to say,

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oh,

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well,

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let's say there have to be two characteristics in this area and three characteristics in this area.

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And then we're gonna call it this.

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Well,

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that's helpful in the sense that we add definition to the concept of autism or dementia or whatever we're talking about.

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But it is somewhat arbitrary.

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Like at some point you have to,

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if you're going about this process,

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you have to make some type of demarcation.

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You know,

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this is when we're going to call it this.

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An analogy might be um you know,

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if we're going to say,

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when do we call something purple?

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Well,

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there are colors that we would all agree are purple.

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There are colors,

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we would all agree aren't purple.

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And then there's kind of this,

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you know,

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middle progression of Hughes where somebody might say,

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well,

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I'd call that more red than purple and someone else would say.

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Uh well,

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I I think it's more purple than red.

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Um So there is this area of Hugh that is not captured in the way the diagnosis is currently defined.

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In addition,

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there are many associated characteristics of autism that are not part of the diagnostic criteria,

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but research has shown that they they very frequently occur.

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So,

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for example,

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it's very common for people on the autism spectrum to have sleep disturbance that's not part of the diagnostic criteria,

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but it is a very common co occurring um brain characteristic because the brain is in charge of sleep.

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Um Also there are people that feel like um atypical motor coordination should be part of the diagnosis because many,

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many people on the spectrum have a history of having some difficulty with motor coordination,

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not everybody.

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But it's common enough that some people feel like it should be one of the diagnostic features that can present.

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So in talking about this,

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I hope you get the picture that neurology is complicated.

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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,

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we have to go about some process of defining what we call what.

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And the same is true as I said,

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for dyslexia.

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Like what do we call a reading problem?

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Is that when there's a phonetic problem,

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a sight reading problem,

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a reading comprehension for paragraphs problem and then how how big does the problem have to be like,

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is it that they're one grade behind?

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You know,

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So they're just gets to be this um discussion in scientific communities about what do we call it?

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And when do we call it?

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That that is true for this diagnostic process?

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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,

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even if there's not the full picture there,

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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.

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And this happens in families as well.

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We talked about the genetic contribution and what may happen in families is that certain people have no characteristics,

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certain people have some characteristics and perhaps a few people in the family meet threshold for a full diagnosis as we talked about,

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because the diagnosis is neuro behavioral,

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it's really important that people understand that thinking skills does not come into this picture at all.

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There is no diagnostic criteria for autism that has to do with intellect,

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which is good because it doesn't have to do with intellect.

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It can co occur with intellectual difficulty,

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it can co occur with average thinking skills and it can co occur for those who have giftedness.

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So there's no implication when we have this diagnosis,

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um,

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that intellect will look a certain way or that the future of the individual will look a certain way.

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We're just talking about an unusual neurologic level of,

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of connection within a certain pathway and these kinds of characteristics tend to hang together in certain people.

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So let's switch gears now that we have kind of a foundation about neurology,

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what it looks like,

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how the diagnosis is created.

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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.

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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.

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Um Other times I bring it up out of the blue,

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like we're kind of talking about today,

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some of that may be out of the blue in a professional context,

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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,

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um,

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indiscriminately so I am not of the opinion that if we notice this pattern and someone else,

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we automatically are obliged to talk to them.

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Now,

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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,

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but I do not have the type of relationship with them where it would be okay for me to bring that up,

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for example.

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Um you know,

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this may be a person that I've had really tough interactions within the past,

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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.

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Um,

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I may hope that other people get the opportunity to talk to them about it.

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Um,

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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.

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I'm less inclined to think about it because I really don't like you talking into my life.

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Um,

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there may also be contexts in which I think it would be inappropriate to raise it at that place and at that time,

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so I'm unlikely to raise it at a funeral.

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I may not,

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you know,

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um,

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I feel like I'm going to bring that up to a superior of mine at a professional convention or something like that.

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So,

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um,

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I do pick and choose when I think it would be wise to approach someone and say something.

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Now there are exceptions to that.

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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,

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like they are struggling significantly and they can't figure out why.

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And really I believe it's related to things that would be eased if they knew this conceptualization of autism.

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Um,

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in that situation,

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I probably would decide to go ahead and approach them because of their high level of need.

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So in that situation,

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the context would override the relationship concerns that I have.

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So I always kind of make that judgment based on the relationship I have with the person,

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the context that we're in and and maybe the time,

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like is this the time to do it?

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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.

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Um,

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and based on what I could contribute in cases where we do decide,

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you know,

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I think I'm going to at least bring it up.

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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.

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We can kind of test the waters so to speak.

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So we could bring it up something gently or bring up something in a non direct way.

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Um,

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and kind of test the waters to see,

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does this person have a strong negative reaction to the topic,

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do they jump on board and seem really interested to talk about it?

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Do you think there's an opening to go deeper?

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So if there's some opening and you feel like there's some receptiveness,

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you can always share more or provide more information.

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So that's one thing that I keep in mind too,

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like putting feelers out,

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how how comfortable is this person with introducing this new topic,

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How open might they be when you decide you are going to share something or bring up the topic,

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you could do this in a variety of ways.

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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.

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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,

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sometimes that just gives you,

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um it creates a context for the person to hear your wisdom based on your experience.

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So,

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oh,

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you've had this personal experience,

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I would like to hear what you have to say.

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So sometimes approaching it in that way I'm bringing it up because what you're experiencing reminds me of myself.

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Sometimes you can bring it up in the context of new learning that you've had.

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So maybe you're not a person who has experienced that yourself,

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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,

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you know,

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how neurology impacts people in general,

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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.

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And in that context,

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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.

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It's so interesting to me,

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it's helped me so much when we do lead with a personal experience.

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Even if it's not a diagnosis,

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you know,

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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.

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Mm hmm.

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Another way to approach it is to have a wondering or a curious tone.

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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.

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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.

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And so if we approach it more as a wondering,

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you know,

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I've been wondering,

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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.

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What do you think or what's your thought about that?

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That gives the person's space to react and to think and they don't feel rushed or pushed.

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Um,

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and that freedom to explore the thought,

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um,

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with you or on their own can really bring about some fruit,

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I think,

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um,

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that can encourage people to learn more and give people space to get their in their own time now as a professional.

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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,

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but you could say client or whatever kind of fits the situation.

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If you work in a school,

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there would be students,

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et cetera,

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and they have come in for some reason.

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And sometimes it has to do with an autism diagnosis and sometimes it does not.

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I work with patients who have all kinds of different backgrounds,

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someone may have had a head injury and be coming in for that or a stroke or an assessment for dementia.

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And I just realized in the midst of that,

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that there's an undiagnosed autism spectrum.

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So sometimes I'm bringing it up cold,

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um,

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where there's no context and they're not expecting it.

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And other times I'm bringing it up or they are expecting it.

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Um,

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I think it's pretty straightforward when they're expecting it.

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So I'm not going to cover that.

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I think what I said at the beginning of the episode,

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does summarize how I how I explain autism to people,

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but if they're not expecting it,

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what I find helpful is to summarize to them what they have said to me,

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so that I make sure I understood it correctly.

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But I'll take that summary and I'll say,

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you know,

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it sounds like you're a person who uh,

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really gets revived by alone time.

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And sometimes the drama of female relationships just actually feels overwhelming that you would be more content with your,

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your cat in a good book.

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And sometimes people at work seem to think you're standoffish or whatever.

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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,

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like,

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you love that thing.

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Uh,

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and so I'll go through each of the criteria just saying that.

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So I'm not bringing up the word autism,

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I'm just showing them that I've heard their description of themselves.

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And I in my own mind,

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I'm saying it back because I know that these things represent some of those criteria,

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then I will say,

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you know,

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when these kinds of things happen and they're expressed in the same person.

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One of the things I think about is neurology,

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because these patterns of neurology,

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these freeways or highways in the brain,

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you know,

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there are patterns that contain these characteristics and when they happen together,

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often it's because of a neurologic,

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um,

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space in there that has some different kinds of wiring that people are noticing and when we see that in the same person,

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we have a name for that and what we call that is autism.

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And then I'll just kind of let them process or react.

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Now I have to say that I am,

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I am very surprised um,

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at how many times somebody in the room,

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whether it's a family member or themselves will say I thought so,

321
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but I didn't want to bring it up and maybe there's a group of three of them,

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right?

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Like the client and family members,

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but they've never talked to each other about it.

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They've just been wondering,

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but they don't feel like it's okay to bring the topic up.

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Kind of like we talked about before.

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Like is this okay to mention,

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is this okay to think about?

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And so we'll go from there.

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Sometimes this is something that they have never considered and they are surprised and kind of pause and have to take that in.

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And I might kind of ask them,

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what are your thoughts about that.

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Um,

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if there is,

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uh,

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a misunderstanding or they just don't know much about autism or they're thinking of it in a different way.

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I just try to give that education,

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if the person seems to be stressed by that or to be upset,

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I just try to figure out what the barrier is.

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So if it's not an information gap that I fill in with education,

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it may be an emotional reaction like we talked about last time,

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um I may say it sounds like maybe you feel like this is a criticism,

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you know,

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this isn't a criticism to me,

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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.

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There are lots of things we can recommend.

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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.

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So I might say,

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well,

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if you ever want to talk more about that topic,

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let me know because I'd be happy to do that.

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Um but in my mind,

354
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I also know that I just,

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I may just want to plant the seed and let them go and not push the topic,

356
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but now that I've introduced it,

357
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they may process that over time.

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Someone else may bring it up to them in the future.

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It may all fall together to them,

360
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but at a different time.

361
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So planting a seed is okay as well.

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I may also say,

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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?

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00:32:22,140 --> 00:32:23,510
Uh and other times,

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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
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Other times I just let it be,

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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
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menstrual cycles,

388
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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
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such as the experience of shifts and how the characteristics our felt or expressed.

392
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Until then,

393
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I hope you have good talks about autism with each other.