260: Autism and Women with Betty and Colleen McCluskey

Brett: [00:00:00] [00:00:00]My guests this week are Betty and Colleen McCluskey. Betty, you were on the show back in 2017 and we talked about autism and autism spectrum disorder. And since that time autism has become part of my life. A loved one in my life is going through the we’re learning a lot about ASD right now.

[00:00:27]So I definitely wanted to have you back and you brought your daughter Colleen with you. So I’m going to let you guys do your own intros buddy first just who you are and what you do.

[00:00:40] Betty: [00:00:40] Betty McCloskey. And I’m a clinician in private practice in Tomahawk, Wisconsin. I have a master’s. Degree in guidance and counseling and a licensed professional counselor in the state of Wisconsin since 1992, I think my journey into autism is personal and has turned professional. My husband, who is a [00:01:00] Rutgers PhD in earth, science was diagnosed with autism and our lovely daughter who’s joining us today.

[00:01:06] Colleen is also diagnosed in third grade with autism. I’m sure my cat has autism. So self-defense first off, got me really into the autism community. And the more I learned about this amazing group of people, the more I spend more time in there, I’m a member of the board of directors, of the state of Wisconsin autism society.

[00:01:30] I work with Wisconsin facets for mediated. IEP is for children who are underserved in public schools. I do all kinds of volunteer work in the community, but my passion is autism because the people I’m passionate about live there.

[00:01:45]Colleen: [00:01:45] Okay. So my name is Kelly McCluskey and I’m actually just graduating from the university of Wisconsin, Eau Claire with an English master’s degree, specifically in literary analysis and textual interpretation. That sounds like a mouthful, but [00:02:00] basically it’s a. I get paid to read about comic books.

[00:02:03] So that’s fun. No, but currently I have a BA in English from the university of Wisconsin, green Bay and associates in ethnic studies from the university of Wisconsin marathon County. I also have a teaching license earned through UWA green Bay. And like Betty said, I am autistic. I was diagnosed in third grade with Asperger’s syndrome, but as of the DSM-V Asperger’s syndrome has kind of been folded into the rest of the autistic diagnostic criteria.

[00:02:28] So I feel a little bit more comfortable just saying autism now. I consider myself a really strong advocate for people on the spectrum and people with Like sort of sister diagnoses ADHD and add tend to manifest with autism other instances of socio communicative disorders, which are basically higher than normal difficulty with neuro-typical social conventions which can be caused by just about anything, honestly.

[00:02:52]That’s very similar to so during my advocacy stuff I’ve presented at a lot of different conferences most [00:03:00] notably IWC, which is international writing center association. And that I believe was about two years ago. And I presented on how you might talk about autism in the college writing center.

[00:03:10]One of my big things is again, I’m an English major, but I also have a background in forensics and theater speaking forensics, not the crime kind. But. I think that being able to talk openly about autism and to acknowledge its existence along with any other mental health struggles, it’s like if we can acknowledge that it exists and kind of talk about it, frankly, then we’re one step closer to not just autism awareness, but autism acceptance.

[00:03:38]I’ve also presented at ASG w autism society of greater Wisconsin conference. Gosh, it’s, I think I’ve done it like probably close to five times now. Maybe more. I can’t remember. But we go every year. It’s very cool. It’s also awesome to see all of the new research and stuff that people have to talk about because it kind of keeps you on the ball with stuff like that.

[00:03:58]But yeah, that’s mostly [00:04:00] me. Apart from that, I’m really into like, drawing making art in general hiking. And my academic interests are, you are like comic books and experimental storytelling specifically, like with hypertext and stuff.

[00:04:12]Brett: [00:04:12] So, I’m curious about where autism research has gone in recent years. I’ve got a good kind of history I guess a rough background of what ASD is and how it was diagnosed, but I’m really curious about what’s fresh and new for autism research.

[00:04:29]Betty: [00:04:29] There’s not a lot, you know, there, there is a lot, there’s always something that’s new, but a lot of what we think of as new is repackaged old. And there are a lot of a lot of the newer things are based on ABA, which has been since the 1960s. Love us, L O V a S introduced us to applied behavioral analysis and it’s kind of a touchstone.

[00:04:54]There’s a lot of controversy surrounding it. And I re I was introduced to it in graduate school, of [00:05:00] course, in the early nineties. And we had what we had the, we called it the toast and jelly video because it was a little girl and they were showing us how to do applied behavioral analysis treatment.

[00:05:13] And the third, I would say, would you like some toast and jelly? And the little girl had echolalia, can we say, just repeat what they hear? And she would say, would you like some toast and jelly and therapists would be holding the toast with jelly and say, no, like some toast and jelly. And she would say, no, would you like some toast and jelly?

[00:05:32] So until she would say, I would like some toast and jelly, she couldn’t have her toast in jail. So think about Pavlov’s dogs and training them and to the bell and the food and the saliva. That’s kind of how ABA works. And while it’s very good in theory BF Skinner influenced love us to start this program.

[00:05:53] And if you remember BF Skinner with a Skinner box where he had the rats that pushed the little [00:06:00] levers, some people don’t know that BF Skinner also raised his daughter in a BF Skinner box until the age of about two and a half. Isn’t that frightening. And there are pictures. If you choose to look online, you will find BF Skinner’s daughter who spoke about it later as an adult.

[00:06:15]But let’s not go there. So what ABA does is it reinforces behavior through presence in treats and positive interaction. And there’s a lot of controversy surrounding that. So it’s morphed because we need a kinder, gentler way because everybody who doesn’t fit into that box pivotal response training is play-based, it’s interactive.

[00:06:40] It kind of sidesteps that one behavior, one reward thing. And it integrates the whole child into that type of therapy. So it’s a pivotal area of development, maybe, please. And thank you. So we’re working on social skills, maybe taking turns at recess. So interactive [00:07:00] skills. The early start Denver model, ESD M is another play-based therapy focuses on children ages one to four, lots of success with that.

[00:07:10] It’s a natural environment. It’s a playmat, rather than that therapist across the table from you format it looks at floor time where kids spend their time and how to help them interact depending on what their needs are. It’s a buffet, basically. You can go. I said, it’s like it’s the early Denver start model. There is a book called evidence-based practices and treatments for children with autism. And this is from fat Fred Volkmar V O L K M a R. He’s done a really nice job of laying out the different therapies that are available and for whom they work best.

[00:07:47]Colleen: [00:07:47] So some of the stuff that I’ve noticed especially as a fairly young adult on the autism spectrum it’s very cool because I’ve kind of been able to watch this focus go from children, which is still a major focus [00:08:00] because of course, early intervention is very important for identifying the struggles that can come with autism and helping someone who’s autistic interact with a world in which they’re a minority in the neurodiversity pool.

[00:08:10]But I’ve kind of been able to watch Everything evolved because I’ve been going to conference and kind of keeping an eye on the research. Ever since I was in high school and now I’m doing my master’s degree in college moving onto a PhD or year after next. So something really interesting that’s emerged that really interests me as a person who is interested in I’ve used, interested like 87 times.

[00:08:34] But no who kind of has this fascination with language is how the conversation around autism has become slightly different over the years. I feel like when I was much younger there, it wasn’t really quite felt out yet. Because the diagnosis only became like common or. Like noticeable within like the nineties.

[00:08:57] So one of the things that I think is really [00:09:00] interesting is the way that people have kind of gone back and reclaimed the word autistic in terms of, Oh, I’m an autistic person rather than a person with autism. And so it’s this identity first language movement. And the reason that people seem to be doing that is it’s like autism is part of who I am.

[00:09:20] In fact, it’s so ingrained into my personality and consciousness that it’s like, if there were a magical button you could push to suddenly take the autism away. I don’t know. I don’t know if I would be left at all. So instead of person with autism, like the autism is an object, like maybe a handbag. It’s autistic person, the autism is part of the person.

[00:09:41]And that goes interestingly against person first language, which is, which has been commonly employed in educational and therapeutic settings for a long time, which is person with autism. This is kind of unique to autism and other elements of neurodiversity because it’s like generally we wouldn’t say a [00:10:00] cancerous person.

[00:10:01] We would say a person with cancer because that’s a more malignant difference. And it’s something that we do want to go away and it doesn’t like inform their life positively. But identity first language is kind of this movement to reclaim the term, autistic it, take it back, make it ours. And the whole, like.

[00:10:21]There’s nothing wrong with a person first language. It really depends on what the person prefers, but I personally like identity first language. There’s also some really interesting stuff going on with functioning labels versus levels of assistance. One of the ways that autism is typically visualized is as a spectrum.

[00:10:39]But people tend to think of it as a spectrum from black to white, not like as a color wheel. And if we’re looking at it on a spectrum of black to white we could say that black is being very autistic and white as being closer to neuro-typical or vice versa. But that places, people who require more assistance on the low-functioning [00:11:00] end and people who require less assistance on the high functioning end, but really it’s more like a color wheel where anyone can be on any color at all.

[00:11:09] And color doesn’t really like inform good or bad because with that sort of dark to light continuum, we have, Oh, this is low functioning. This is bad. This is high functioning, this is good. This is close to neuro-typical. And it’s like the further towards that dark end, you get the less positive it is when really it’s like all that the functioning label really does is it makes people who are counted as low functioning.

[00:11:33]It kind of demeans them and infants and infantilizes them. And it’s like, Any success they have is ignored. And then when people are helping to the standard of being high functioning, it’s like, Oh, they’re basically neuro-typical. I don’t know why they would need that. And so it diminishes the needs that autistic people who present better have.

[00:11:58] And ultimately it’s better to just [00:12:00] kind of view it as the circle where it’s like fluid and you can move around. It’s like, I do that very well with public speaking. I do very well academically when it comes to social situations. I’m not that good when it comes to other situations like I do not have a driver’s license I’m working on that, but I’m 27 and I’ve, I haven’t been able to pass the test a lot.

[00:12:24]It has to do with blind spots and a lot of it has to do with my interpersonal relationship with the driving instructor or who’s T or the person who’s testing me, but it’s like, If you can’t drive, does that make you low functioning? No. If you can’t talk, does that make you low functioning? No.

[00:12:42]Betty: [00:12:42] Going back to the DSM-V when we talk about, and Colin keeps putting high functioning and low functioning in quotation marks as she speaks. And I think that’s important for people to understand because those aren’t excepted labels, if you will, any longer. And the DSM-V, the diagnostics and [00:13:00] statistics manual fifth edition has changed to the autism spectrum disorder.

[00:13:06] And then it’s requiring level of service at one, two or three, and one is requiring less service in three is requiring more service. So when we diagnosed now, We say that someone has an autism spectrum disorder requiring X number of service. And then there’s another part of it that comes with the schools.

[00:13:28]And we’re in Wisconsin and schools have their own way of diagnosing what we call educational autism, which is not a DSM five diagnosis. What it does do is it allows the school to determine if that student needs additional support in the educational system to make the level playing field with other students who are not neuro-diverse.

[00:13:57] It gives them an opportunity to say we can’t [00:14:00] provide those services, or we need time to provide those services. Here’s what we can do educationally for your child. So the idea of diagnosing autism versus a pop psychology diagnosis for autism is really different. And. When we look at those two things together and I’ll have parents in my office talking to me about, well, do you think my child is autistic?

[00:14:23] And of course they’re terrorized. I mean, who wouldn’t be? There’s so much information. That’s good. That’s bad. That’s out there. And I say your child meets criteria for an autism spectrum disorder requiring level two services. Here’s what that looks like. Well, we have to call the school while eventually, yeah, we do have to call the school, but we can’t do that today.

[00:14:45] It’s Friday. And it’s after three o’clock, but I think it’s important to know that the diagnosis of autism spectrum disorder is something that is made in one day, but he evolves over time and he can’t just jump right in [00:15:00] and cure it. All right. Now today.

[00:15:01] Brett: [00:15:01] So that makes a lot of sense with with children. There are a lot of people, multiple people in my life that didn’t find out they were autistic until they were in their forties or fifties. And have like, basically, and this is all the people in my life that I’m speaking of are female. And as I researched it, it turned out that women are better at masking better at developing the coping skills to go undetected.

[00:15:33] Y okay. How does autism manifest differently between men and women or boys and girls?

[00:15:41] Betty: [00:15:41] Actually it doesn’t manifest differently and that’s, what’s confusing. The symptomology is symptomology because that’s what matches a diagnostic criteria. But what happens is, and Colleen and I were actually talking about this afternoon is that girls are taught to be nice. Girls are sugar and [00:16:00] spice and everything nice.

[00:16:01] And boys are rats and snails and puppy dogs tails. And so when a boy comes in and he’s lost, I don’t know his tetherball tournament to his best friend. He might throw that tetherball and say, I hate tetherball and I’m never playing again. Okay. Well, if a girl comes in and does that, her mom says, Shane, that’s not nice.

[00:16:22] Susie is your best friend. We don’t talk to our best friends that way. And if the boy does it as like, yeah, that’s my boy. He’s going to get even next time. It’s socially acceptable in our gender specific society for that male to act out in different ways, to be more upset about transitions in environment, to be more upset about a foiled social interaction.

[00:16:48] But girls, we are taught to be nice. And especially in the Midwest, we’re really taught to be nice. So when, yep. When we look at women on the spectrum, it’s not [00:17:00] that they don’t have the symptomology. It’s been conditioned out of a lot of us, especially by the time we reach adulthood and things. Wait a minute.

[00:17:07] You people are all talking about how I grew up and told me I was wrong. And this was not what my life was supposed to be like. So you taught me to wear skirts with scratchy, underskirts and shoes. I didn’t like, and you taught me that I had wear makeup and hair heels. And now I’m finding out that there is now like all those things.

[00:17:28] It’s cause I have sensory difficulties and it’s hard to walk in heels. And I don’t like makeup because my skin is sensitive and the smell of it, bad boys don’t have to wear makeup. They don’t have to walk in heels. So we’re expecting more of females on the spectrum than we are of males, but it’s part of our society.

[00:17:47] It is gender specific.

[00:17:49]Colleen: [00:17:49] we talk about diagnostic criteria, my diagnosis Asperger’s syndrome is from the work of Hans Asperger who primarily studied [00:18:00] males white males specifically. And so the rates of diagnosis based on that criteria in females and people of color would be they’re not the same.

[00:18:09] That’s why male, autism or male Asperger’s usually presents itself more, obviously, because it’s like not only are girls kind of conditioned to be the nicer, more quiet, more. Okay. I don’t want to say submissive, but you could argue that. It’s like, for example, I think we all know about the special interest area of autism.

[00:18:30] And if a boy has a special interest in trains or dinosaurs, that’s like a normal boy thing. If it continues into adulthood, it’s like, okay, that’s a little funny.

[00:18:40]Betty: [00:18:40] Brett, when Colleen was diagnosed the person who did her diagnosis was someone who came to the school system once a year in our little tiny town of Tomahawk. And she said, well, Colleen, what’s some of your favorite things. And she started down the dinosaur and list and Dr.

[00:18:58] Chest and said, Oh, [00:19:00] you’re a dyno kid

[00:19:02]Colleen: [00:19:02] it’s common enough that it has a little name. I love it.

[00:19:05] Betty: [00:19:05] It does, but not typically in girls, typically in boys, girls do Barbies and my little pony and my, what are they? The pocket pals or whatever they are. There’s all kinds of little girl tiny toys.

[00:19:18] Colleen: [00:19:18] pet shop, Polly pocket,

[00:19:19] Betty: [00:19:19] Polly pockets.

[00:19:22]Colleen: [00:19:22] If someone has an obsessive interest in horses, for example, if that person is male, people are gonna be like, why do you like horses so much? But if that person is female, they’re going to be like, Oh, okay. Yeah, she’s a horse girl. And it’s like, if a girl has a special interest in makeup and if they can like list all of the new colors from Sephora, or like they have this encyclopedic knowledge of every foundation brand known to man, it’s like, that’s like, Oh, that’s a girl thing, not a wow.

[00:19:55] You know, a lot about that. And that’s a hobby. And so for a lot of feminine [00:20:00] interests they’re considered normal for girls and that’s That’s why a lot of it gets overlooked in terms of that particular piece of criteria.

[00:20:09]Brett: [00:20:09] So in girls with autism what type of masking do girls growing up? Let’s say girls who are diagnosed at a young age, like you were Colleen. What coping skills did you develop growing up in like grade school and middle school? What were the big things that you had to compensate for?

[00:20:31]Colleen: [00:20:31] Some of the stuff I had to compensate for was and I learned this retroactively, but one of the big things was the fact that people with autism do not have, again, I do not have I’m not hard wired to automatically pick up on social skills. Basically all of my social skills are learned. I like to use a computer metaphor here because it’s like some computer systems come with like a video editor or something built in, [00:21:00] but if the computer doesn’t have that, you have to install a separate program to do that.

[00:21:04] So like, technically it can do that, but you need to put that on first. And so it’s like, Colleen doesn’t know how to make eye contact. And so I noticed that people were really weird about that. And so I learned that you can look just beyond the head in the middle of the eyes at the clavicles, anything like that.

[00:21:25]As long as you don’t do it too long, but that was another one. It was a lot of, it was mimicry without a true understanding of why. And that was one of the most frustrating things because it’s like, all right, why do we do small talk? Why are we talking about. Breaking up with such and who’s dating who and all of this stuff.

[00:21:44] I’m like, I should not be private. And I just kind of want along with a lot of things that people said, and I kind of kept to myself because I’m like, you know what? I don’t want to get embroiled in all of this [00:22:00] teenage angst and nonsense. So, when I was in middle to high school I just, I kinda stayed away from that.

[00:22:07]When I got into early college though I got a much better understanding of how to interact with people. And I had kind of been building that over middle of high school, stuff like that, but I was also able to be a lot more open about my diagnosis because in college people are much more accepting.

[00:22:24]Instead of as cutthroat as middle schoolers and high schoolers can be

[00:22:28]Brett: [00:22:28] and Betty, you’ve talked mostly about children that you work with. Do you work with adults as well

[00:22:34] Betty: [00:22:34] I do, and I love working with adults.

[00:22:36] What’s so cool about working with adults who’ve been recently diagnosed is that there’s that realization that you’ve been living a really great and normal life, all things considered, but here’s an explanation for the difficulties that you’ve had all this time.

[00:22:55]I took my car to the shop two months ago for its 40,000 mile checkup and it was running really [00:23:00] rough really rough. Well, this isn’t good. I want share my, I won’t share what I drive, but I love my little car. And so the guy who’s been working at the shop for, I don’t know, eight years says, well, I can’t imagine why it’s running rough.

[00:23:16] It’s not that old. So he opens up the hood and he says, well, you have an oil leak. And I said, Oh my gosh, seriously, why would that happen? And then he’s he fixes me with that, look that mom, what did you do to your car look? And he says, did you do anything to this oil cap? I said, yeah. You know, as a matter of fact, it did one oil, about six months ago, he said, well, you didn’t put it on tape.

[00:23:39] We’ll clean it up the best we can. So I’d been running my car for a couple of, and it was going to chunky. I’m thinking I got to get it in. I got to get it in. And when I finally get it in, it’s so easy as yeah. If I had a tightened up that oil cap when I put it in that half a court a couple months ago.

[00:23:56] And I think that when adults get that. Autism [00:24:00] diagnosis. It’s like, Oh, that’s what it was. Well, it’s not as easy as tightening the oil cap and cleaning up the mess, but it certainly is. It’s such a, it’s such a wonderful explanation for what’s gone on for so long and being able to say, here’s some great resources here.

[00:24:19] Watch this movie, talk to these people, join this conference. You can figure it out too. Cause we all did. And I think that’s, what’s the best thing about working with adults is because it’s just, it’s so great to see that Dawn

[00:24:33] Brett: [00:24:33] What do adults who are diagnosed later in life, do they make changes or is the diagnosis moral way to explain the way they are?

[00:24:43] Colleen: [00:24:43] I think that it evolves as the person evolves. When I was diagnosed as a child, I was like, okay, there’s a reason that I can’t get what everyone else does. There’s a reason that I’m not like everyone else, but as an adult sometimes I’ve just been like, I don’t feel like I need [00:25:00] to change anything right now.

[00:25:01] I don’t think that there’s a need, but if I notice something that I’m having difficulty with, I’ll be like, okay. So I noticed that like, For example, I used to not be as good as at reading facial expressions as I am now. And I asked my mom one time. So what is this? And I’m doing like, like the little polite cat smile.

[00:25:22] If we if we’ve seen that meme where it’s just like corners of the mouth, go up, smile, doesn’t reach the eyes. People do it when they pass each other in the hallway or the grocery store. And she’s like, that’s just a thing people do. Here’s here’s what I know about it. And I’m like, okay. And then I I was taking a socio-linguistics class, so I asked my professor like, what is this?

[00:25:42] And she’s like, Oh, that’s a closed mouth, non douchey and smile. And people do it to establish a, I see you. And I am not a hostile. And in fact, I’m happy that you’re here. But it’s more of a performative thing and I’m like, Oh, interesting. And actually that socio-linguistics [00:26:00] class really kind of changed my life because it showed me that there’s like a manual for social interaction.

[00:26:05] It’s like, all of these things that we do, like small talk serves to kind of it’s conversational foreplay, basically. It says I’m all right. You’re all right. Is there anything really bothering you? No, let’s engage in conversation. It’s kind of just testing the water and there are all sorts of things like that.

[00:26:23] Like adjacency pairs. Hello. How are you? Oh, I’m doing good. How are you? Oh, I’m good. But there’s the expectation to answer in a specific way that folks on the spectrum don’t always get. And so sometimes other autistic people that I’ve worked with or talk to they’re like, Oh yeah. So I noticed I was having a lot of trouble making friends or socializing at work or.

[00:26:46]Again, there’s other parts too, other than being social, or like doing my planner or figuring out where to put stuff now that I live on my own and that’s the executive function. And it’s like, okay, if it’s hindering your life in [00:27:00] some way, then you might need to address it. But so there’s the component of wanting to get services, which I’m sure Betty can tell us a little bit more about.

[00:27:07]Betty: [00:27:07] W I find that when I work with adults with a recent diagnosis, the changes that they make are not so much personality or personal changes, but usually we’re working on changes that we make in lifestyle and maybe in employment. I might have somebody who’s been a formal referral from an employer for whatever kind of difficulty they have in the workplace.

[00:27:33] And as we start to talk and I say, wow, let’s do some screening here. Cause you’re sounding kind of autistic to me. And with, you know, years of practice, I kind of can see it right away. And I can say, okay let’s talk about your work environment. And the fans, but the fans, like what’s that blowing air?

[00:27:52] What does that do to you? The sound of the fan goes through my head like a knife. Great. Can we put you out [00:28:00] in the stock room? Cause maybe that’ll make your life so much easier because that’s got a different heating element or I had somebody who worked for the U S P S for awhile. Great. At delivery.

[00:28:12] Rural route delivery was fantastic. Cause love to speed. Had a great vehicle. But what we don’t know about postal carriers in a small community is that you’ve got this little tiny cubicle that’s maybe. Four feet square. And it’s got all this tiny slots for all the mail on your road, and you have to put all the mail in all the slots and then you deliver it from there.

[00:28:34] That’s how you start your mail. Claustrophobia didn’t work for this guy. So can somebody else do that? And then he can drive the route. Sure. Why not? There’s other people who like small spaces, but really getting the explanation that it is an autism diagnosis. And then being able to look at some of the symptomology and say, this one’s made this.

[00:28:57] One’s not, this one’s me. No [00:29:00] wonder I have trouble with my nephew who can’t seem to put down his deodorant made by the ax company. And he smells terrible to me. So I can’t go near this teenager. He’s trying hard, but it doesn’t work for me. Can we just go unscented on the weekends? We spend time together.

[00:29:19] And learning those things about you and why your environment is so difficult makes changes that makes you living in the neurotypical world so much easier.

[00:29:29]Brett: [00:29:29] Like I have ADHD and I was diagnosed in, I think my late twenties and it didn’t require like I was with ADHD. I use stimulants, I get treatment. It’s manageable because of that. But just having that explanation for why things had been difficult for me up to that point was a huge relief. Like that was even if I had not done anything else with it, if I had not researched, if I had not treated it, [00:30:00] just having that explanation.

[00:30:01] So I could go back to all of the rough parts of my childhood and say, that makes sense. It makes perfect sense. Now.

[00:30:09] Betty: [00:30:09] It does it, it gives you a permission. Or absolution to be the person that you’ve always known you were, and that’s what the adult diagnosis does. It’s funny you say that Brett, because one of my favorite ADHD books is written for teenage boys and it’s called human. I’m not crazy, lazy or stupid.

[00:30:29] And I love that so much because it’s what they tell you from the moment that you act inappropriately and impulsively. And it is such a beautiful way to say, look here, this was written just for you. And when I give those to teenage person, like, where’s my name in here on page one introduction, you’re there.

[00:30:51]So it’s really it. Isn’t so nice to know the explanation for the behaviors and the thoughts and the difficulties.

[00:30:58] Brett: [00:30:58] Well, because then you can also [00:31:00] not see those things as character or like moral defects. You can see them as a personality traits instead of character flaws. And I think that’s important in both ADHD and ASD.

[00:31:13]Betty: [00:31:13] It is. And you know, if you think about it cause ASD is a development, a neurodevelopmental disorder, so is ADHD and they’re both invisible disabilities. But if we think about someone who has a physical disability that we can actually see, then we say, well, of course, John is not going to try out for the bowling team.

[00:31:35] He has to special Olympics for that because bowling was special. Olympics uses a wheelchair and we can’t. So we, if we could see that invisible disability in people with a neurodevelopmental disorder, then we can know that here’s an explanation, but we don’t do that as neurotypicals we just say, well, that’s kind of weird, but did you realize that person ate their entire [00:32:00] salad with their hands?

[00:32:01]Did it occur to you that perhaps they can’t stand the clink of the metal against their teeth and you didn’t offer any other kind of silverware, so they had to use your hands.

[00:32:09]Brett: [00:32:09] I hadn’t even considered that possibility.

[00:32:12]Colleen: [00:32:12] Yeah it’s a big mood. I think that if I had been in a situation where I’d been diagnosed as an adult the feeling that I had when I was a child would have been even stronger. And sometimes I actually do have to go back and remind myself that these are not moral failings. These are an autistic trait that you can’t change.

[00:32:32]And it can be very frustrating sometimes because it’s like, okay I’ve done as much as I can do for today. And I can’t go to the supermarket because the buzzing of the lights and all of the people and the sound of the cart will make me go into overload. And I’ll just probably. Have a meltdown after I get into the car and I don’t want to do that to myself.

[00:32:55] It’s like, God, what’s wrong with me that I can’t do that. It’s like, [00:33:00] there’s nothing wrong with you. It’s just that your brain is built differently. And other people have trouble with different things too. It’s like everyone has things that are easy and things that are difficult. And because of the architecture of your mind, going to the store is difficult for you.

[00:33:16]But things that other people would find difficult, like reading a 10 page paper in the span of 24 hours come incredibly easily. And it’s like, that’s one of those things where it’s this isn’t bad. It’s just something that exists that you have to work with. And I find that’s really positive for me cause I’ll go like, okay, I can’t, I’m very frustrated because I can’t do this thing or I don’t understand why I can do this so easily.

[00:33:44] And my friends or partner can’t and it’s like, Brain’s built differently. You wouldn’t expect a motorcycle to do what a Jeep does. Like they’re both vehicles, but they work slightly different. So that’s the vibe.

[00:33:58] Brett: [00:33:58] When you talked about [00:34:00] how it was easier for you to talk about ASD in once you get to college when you’re meeting new people now, at what point do you. Bring up ASD in the conversation. Is that, I mean, do you lead with higher I’m Kelly and I’m autistic or is that something you have to get to know people before it comes up?

[00:34:18]Colleen: [00:34:18] There are some parts of it that I have to share immediately just for practicality sake. One of those things is face blindness or prospect nausea. I believe I’m pronouncing that correctly. I haven’t ever actually gotten a official diagnosis of that, but it’s pretty obvious. And what face blindness is it’s like, okay.

[00:34:39]So here we have Bob and Steve and Bob and Steve are both about the same height. They both have Brown hair. They both have light skin. I could go for like a whole week without realizing that Bob and Steve are two different people. It has happened and it continues to happen. And it is very strange. Um, I do, I have to say.

[00:34:58] Okay. [00:35:00] So something you need to know about me is that I have trouble with faces. It’s actually face blindness. It’s a symptom of a diagnosis that I have. I don’t always specify that it’s autism until I kind of understand where the person is with their understanding of autism, because it’s like when I was in, gosh when I was going into fourth grade

[00:35:22] Betty: [00:35:22] Should I tell that

[00:35:23]Colleen: [00:35:23] Please tell the story. You do it better than

[00:35:25] Betty: [00:35:25] I went to talk to her teacher to say, okay, because she was born in 93, when the Asperger’s diagnosis first came in. So fourth grade, our small town doesn’t have a whole lot of information. So I got to talk to the teacher and say, you’ve got this kind of a child coming in.

[00:35:42] Let me give you a few of the positive things in a few of the concerns that I have as a parent. And she says, Oh, I know all about Colleen. I’ve been expecting her now. I think I’m going to put her in this area of the classroom because I understand that she’ll need five feet of personal space on either side.

[00:35:59] And does [00:36:00] she have any special appliances or anything? Is she in wheelchair? I was like, Oh, Carol, you’re so wonderful to think of all those amazing things. You’ll never know that she’s autistic when you look at her or when you listen to her, but here let’s talk about things that might be a concern for you because people think they know what they know and trying to determine what level of understanding they have of that diagnosis can be tricky at best.

[00:36:27]Colleen: [00:36:27] Sometimes, if I’m working with someone who I know will not understand like I had a job working as a waitress a couple years ago. And one of my colleagues was an older gentleman and he was our cook. And I had to tell him I was hard of hearing. Because Tory processing difficulty due to autism spectrum disorder is not something that is going to be in this guy’s vocabulary.

[00:36:51]And sometimes it’s easier to just say, okay, I’m really bad with faces. It’s a thing. It has a name, or, you know, I [00:37:00] can be hard of hearing. It runs in my family. It’s not bad enough to have a hearing aid, but just make sure that you repeat stuff if I ask. But if it’s someone who I know has an interest in neurodiversity, if they have an interest in education and they probably have a decent base of knowledge, I can be like, okay, I’m what you would call low assistance, autistic which might be called high functioning or Asperger’s syndrome, depending on what you’re familiar with.

[00:37:25]And by that point they usually know me pretty well, so it doesn’t really influence their perception of me as a person. But of course if I’m like at a conference or something and I’m talking to a guy who is very obviously flapping or some lady, who’s very obviously chewing on something, I’m like, Oh, cool.

[00:37:41] So when did you get diagnosed? And they’re like, Oh, fourth grade. And I’m like, Oh, big mood. And then we just go from there.

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[00:39:36]Top 3 Picks [00:39:36]

[00:39:36] Well, we have some extra top picks to get to today. So I want to switch over because I assume this conversation will continue based on the the topics I’ve seen already. So let’s do it. Let’s start with Betty and we’ll do two from Betty and two from Colleen. And then if there are extras to spill over, we’ll go back.

[00:39:58] Betty: [00:39:59] W [00:40:00] one of the things I’m loving right now is Jennifer Cook. O’Tooles book called autism in heels, and she’s much lotted, much publicized and widely spoken about females with autism spectrum disorder. And her work is a personal memoir. So I’m loving her book right now. It’s been out about two years and of course my first and foremost, favorite is Tony Attwood.

[00:40:27] Asperger’s because he is, he’s not Australian. And he’s an amazing, amazingly intelligent man who talks so much about it. And this book, while we don’t always like the title is. Probably the Seminole work on, put it in quotes. High-functioning autism. He’s done such an excellent job of explaining it. And for parents and people who support those on the autism spectrum, especially those requiring less services.

[00:40:56] This is an excellent book.

[00:40:58] Brett: [00:40:58] It’s mentioned real quick. [00:41:00] Why the title makes people uncomfortable these days? The Asperger’s word.

[00:41:04]Betty: [00:41:04] Well, Hans Asperger was a German who studied Kelly was talking about him earlier, who studied young boys and why they were so different. But if they were different enough, they were institutionalized and not always allowed to live. And so Hans Asperger has fallen out of favor with the autism community as so many of those early German scientists have his work was still invaluable, but the Asperger’s label may sit really hard for a lot of people. What to admit that they have it and makes it hard for clinicians who are sensitive to give that diagnosis as well.

[00:41:45]Colleen: [00:41:45] So it’s very fortunate that the Asperger’s diagnosis has been absorbed into autism as a whole. There was also kind of a thing where people thought Asperger’s and autism are two separate things. Whereas today we know [00:42:00] that they’re all part of the same thing, but you would have what some presenters have called ASPE supremacy, where it’s like, Oh, we’re higher functioning than those autistic people.

[00:42:12] And it kind of. Did its job, like the way that Hans Asperger had planned it, like if these autistic kids are high functioning enough, they’ll get saved. If these autistic kids are low functioning enough, they won’t get saved. And it served to divide the community in a way that just wasn’t cool. And I’m glad that a lot of people are more aware of it now, because that means that we can be stronger together.

[00:42:38]But yeah.

[00:42:40] Brett: [00:42:40] So, but that was too in rapid succession, Betty, faster than I thought you want to throw one more in.

[00:42:45]Betty: [00:42:45] The temple Grandin movie is a made for television movie from, I don’t even know how many years ago, maybe 10 and Claire Danes played temple Grandin to a T, but I think what’s so awesome about that movie is [00:43:00] not just that it’s a movie about temple grand and she’s probably the most famous female in the United States.

[00:43:06] Ways with autism, but the fact that she was the director and in that movie, she has been able to give such a really excellent depiction of the visual thinking. That’s so very common to people on the autism spectrum. And she talks about her ability to understand things in different ways, because of her visual thinking style.

[00:43:33] And that’s a hard concept for most neurotypicals to get, because don’t, we all think about pictures. If you tell me you have a dog, I say, what kind you say, I have a black lab. I have a picture of a black lab, but for someone who has that type of visual thinking, it’s you have a dog. Now, I’ve got every Google image in the world instantly flashing through my brain until you say, I have a black.

[00:43:59] Now I have [00:44:00] all the black dogs and they do say lamb, and then I can get it down farther. So my search engine works at top speed more than yours has too, because I don’t do words, not like you. I do words like a visual thinker. So in that movie, when she shows the visual thinking process, it’s really incredible and so helpful for us.

[00:44:23] Neurotypicals who don’t think visually to understand the people we support. So the movie awesome. Totally awesome. Colleen and I watched it together the first time we watched it and it’s sad and poignant at the same time. I think maybe you were in high school. And as I look over at her at the end of the movie, tears raining down her face and I’m like, are you okay?

[00:44:47] You know, it’s the mom, it’s the, I need to comfort my baby mom. And she goes, You mean I’m normal mom. I could be normal. Like, yeah. I didn’t know. You didn’t think you [00:45:00] could be. But it was such a really nice realization for her that here’s someone who’s so very famous and so very common at the same time.

[00:45:10] So very down to earth and living her best life the way she wants to. And for Colleen to sit there and go, I could be normal said to me, this is a great movie because now I’ve learned that I can live my best life too.

[00:45:24] Brett: [00:45:24] Well, that had to be kind of emotional for you too, to hear that she didn’t up until that point realized she could be normal.

[00:45:33] Betty: [00:45:33] Oh, really. And I’d been, this is my job. I’ve been using best practices and doing everything I could to encourage the social skills and all the things we need to do. And I like to think I’m pretty good at it. But there, she was still with everything we’d done together and she’d accomplished on her own going.

[00:45:53] I could be normal, like, wow. Obviously I’ve missed something here. Haven’t I?

[00:46:00] [00:46:00] Brett: [00:46:00] Well, it’s sounds like a movie I need to see though. Do you know if it’s streaming

[00:46:04] Betty: [00:46:04] It is I might be on Netflix. I’ve looked at it recently and I saw it, but stuff doesn’t stay there forever.

[00:46:10]Brett: [00:46:10] All right. Well, Colleen, give us a couple top picks.

[00:46:14]Colleen: [00:46:14] Okay. I would like to second Betty’s recommendation for the temple Grandin movie. Just because it doesn’t really, it doesn’t romanticize what it’s like to have autism, and that can be common because it’s like, Oh, autism is a superpower. Autism is unique and excellent. And I’m like, it can be in a lot of very good ways, but the reality of it is that not all people are as accepting as they could be and the world is not built for people with autism.

[00:46:44]We can make it better. We can use that nice universal design approach to either create spaces and services or to improve spaces and services retroactively. But there are a couple of scenes that are very emotional. One of them is When temple is experiencing [00:47:00] bullying from her coworkers at the meat plant, and it’s just brutal.

[00:47:04] It’s incredible. And that really resonated with me because I had similar experiences when I was in middle and high school. And I really enjoy that the movie doesn’t throw or it doesn’t pull any punches. It provides a very unbiased look at what Temple’s life was like through childhood and early adulthood.

[00:47:25]So it doesn’t sugar coat things, but it’s not completely hopeless either. I feel like it’s a very balanced depiction. And again for folks watching you’ll want to check out like any content warnings related to it because there is a lot of ableism. There is a lot of misogyny that she faces as she goes through her life.

[00:47:43] But again, It’s excellent. Another thing that I would recommend are any of temples autobiographies, including the one that the movie is based on. One that I really like is the autistic brain helping different kinds of minds succeed. And this [00:48:00] was written back when we had more of the high functioning, low functioning dichotomy.

[00:48:04] And so it’s aimed a little bit more at people who have skills within the social sphere as opposed to people who may be non-verbal or challenged in other ways, but at the same time, it’s important to realize that everyone has different needs. And this book helps with that, but she goes into how people in Silicon Valley may have autism people who Work in these jobs where it’s like different kinds of intelligence, different perspectives are necessary to succeed.

[00:48:33] And she talks about these are the basic skills that any person should learn. It’s like learn to be clean and learn to be on time. Learned to say, please, and thank you. And. I just think that’s so important because it establishes a baseline of respect for the people around you. And in turn, hopefully they’ll respect you, but it shows that you’re trying and that you’re on their wavelength too, because this may be a bit [00:49:00] controversial, but I think that sometimes we can be, so open-minded that our brains fall out a little bit.

[00:49:05]It can be easy to say that, Oh, this person has this diagnosis. They can do whatever they want. It’s an explanation, not an excuse. And it’s like, yes, I understand that you went into meltdown. And I do know that you couldn’t control what you were saying, but you said some very hurtful things. And I need to know that you’re not mad at me.

[00:49:29]And so it kind of establishes this baseline of just respect. Cause it’s like. I understand that I can be hard to work with. I know I can per separate on lots of things and not everyone is good with that. And so I always ask, okay. I feel like I’m talking a lot. Do do you want to take a break or if you ask me this question, I’m going to go on and on about one of my interests.

[00:49:52]I hope you’re ready for that. And sometimes I even give people like a little clue and they can be like, Colleen, I need to go take a drink now. [00:50:00] Preferably non-alcoholic. But we never know. But it’s the same kind of respect I would expect for anybody else. It’s like, okay. I Bette can you jump in with an example?

[00:50:13] That’s more generalized please?

[00:50:14]Betty: [00:50:14] You mean for per separation?

[00:50:16]Colleen: [00:50:16] No, just a thing that someone does that might be annoying

[00:50:20] Betty: [00:50:20] Oh my goodness.

[00:50:21] Colleen: [00:50:21] or disruptive.

[00:50:22]Betty: [00:50:22] I actually gosh, there’s so many to choose from. Isn’t there. I had a little boy for a while. And I have permission to tell some things about him and he did the keening, which is that high pitched kind of, and I won’t do it cause it can be so annoying. It’s a kind of a high pitched, wail or scream.

[00:50:42] That’s really hard. And then would STEM with his hand, flapping his hand directly in front of his face. And my office is in a small suite of offices and he would do that out in the main office. And people in the other suites finally came to me and said, listen they’re our customers are kind of scared here.

[00:51:00] [00:51:00] They don’t know if they should call social services or they should go home. Can we work on that? So helping him to recognize that behavior was not appropriate in this place was really a nice developmental milestone for him. To learn that other people can see him in a different way. So it was really effective to help him learn more about himself in the, in other words, people’s environments and how he fits into the narrative fickle world.

[00:51:27] But there’s all kinds of things. I mean, shoot. Yeah, everybody has something they do that annoys someone else. But in the neuro-typical world, we accept things in different ways, hand flapping, gum chewing, which one’s worse. I don’t know if you’re going to snap your gum at me three times every minute, I’m going to be pretty annoyed.

[00:51:47]If flap and it’s going to be quiet and you’re behind me, I don’t care. So it depends on the situation. It depends on the people.

[00:51:54]Colleen: [00:51:54] At autism conference, one of our keynote speakers gave an absolutely excellent analogy for [00:52:00] this. Just like understanding that your particular quirks may not be conducive to people around you and being just respectful of them. The idea of guide dogs, it’s like if you have to have a seeing eye dog or an emotional support animal, and it has to go everywhere with you, that’s negotiable, but also you have people who have been traumatized by dogs.

[00:52:24] Maybe they’ve been bitten. Maybe they’ve been barked at perhaps there’s been a police incident that scared them. Or they might have a very strong allergy. It’s all about negotiating, what works and what doesn’t, because it’s like, Okay. If this is incredibly annoying, maybe I can do this instead under the table, it’ll still get the need met.

[00:52:46] Or if I feel the need to spin around in circles, I can take breaks to do that. We do that with our kids. In elementary school, it’s like, okay, Bob, you need to go to the sensory room. Okay. Let’s go in there and you [00:53:00] can blow off some steam and come back. And it’s like, if you phrase it the right way, most people are all right with it.

[00:53:06]So that’s kind of what I was getting at there. But apart from Temple’s book, I would also recommend near a wonderful asking autistic video series by amethyst boy Scheiber and amethyst is non-binary. And they do an excellent job of talking about a lot of major issues in their asking autistic series.

[00:53:25]Like what is masking? What is stemming what are things you should never say to someone who was autistic? What is X, Y, and Z? It’s a series of probably 10 or so videos. And it’s very excellent. They are also autistic. If the title wasn’t something super obvious, but it’s very cool.

[00:53:42] They’re also active on Twitter and tumbler as well. If you go to their YouTube channel, which I think we can link in the description they have a link tree just like kind of, they also do speaking engagements and stuff, so very cool.

[00:53:54] Brett: [00:53:54] Awesome. All right. Well, thank you both for showing up today, Betty. It was great to talk [00:54:00] to you again and Colleen, it’s great to meet you.

[00:54:02]Colleen: [00:54:02] And thanks for having me on as well. I really appreciate it.

[00:54:05] Brett: [00:54:05] Yeah, no, your insight was excellent. I really appreciate it. And and thanks everyone for tuning in. We’re actually coming to the end of a season. So stay tuned for the last couple episodes of systematic before a little break.