103: Autism (actually) Speaks with Kerry Magro
For several recent episodes, I’ve been interviewing people with autism about their perspectives and experiences. We are discussing the DSM criteria, stereotypes about autism, and how autism affects the lives of both children and adults. An autism diagnosis can have many different nuances, and there is so much more to autism than the DSM criteria. Today’s guest, Kerry Magro, shares his experience in this episode. Join us to learn more!
Show Highlights:
Kerry’s growing up years with mostly communication and sensory-based challenges, love and support from his family, and his success as a professional certified speaker
Kerry’s various college and graduate degrees
Stereotypes about autism
Understanding autism as a true spectrum with a wide range of complexities and strengths
Kerry’s challenges with eye contact and other social norms
Understanding “autism burnout,” masking, representation, and “honoring” the disability
Kerry’s perspective on autism and relationships
“Repetitive and restricted behaviors” in adulthood
Kerry’s experience as an adult, dealing with sensory sensitivities and learning to speak up for accommodations
Kerry’s experience with autism and physical touch
Advice for parents
Resources and Links:
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Get KC’s book, How to Keep House While Drowning
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KC 0:05
So basically what I have been doing is interviewing people. And the goal of the podcast is to talk about what autism is from the perspective of what it feels like or the experience of having autism from autistic individuals. And so going through the I know, there's much more autism than the DSM criteria. But I also know that when parents are looking at the DSM criteria, they can only really imagine what that looks like. And so what I've been doing is going through the various pieces of the DSM criteria, and asking people, you know, what is this particular piece look like in your life? How does that feel? How do you experience that? Like, what insight can you give us about that part of the experience? Will you start by telling me a little bit about what you were like growing up?
Kerry Magro 0:57
Sure. So growing up, I had a lot of challenges. I was nonspeaking, till I was two and a half, I diagnosed with autism at four and Spencer speak in complete sentences till I was seven. So most of my challenges growing up were communication and sensory based, there was still a lot when I was young, that people really just had no clue about autism, everyone just assumed everyone with autism was going to be great at math, that they would have a photogenic memory, they would all be white males. And when they turned 21, they wouldn't be able to when you add $1,000, on the blackjack tables. So we now I think, some of my biggest challenges so we're about those unconscious biases. And then also those people who stereotypically tried to fit autism into a box didn't meet me where I was in my own development. And that became very challenging at times. But thankfully, I had the love and support of my family who helped me reach all my developmental milestones through 15 years of occupational physical speech, music and theatre therapy to get me to where I am today is one of the first openly autistic professionally certified speakers in the country.
KC 2:03
That is wonderful. And you have a doctorate Tell me about that.
Kerry Magro 2:08
Sure. So growing up, I had some extreme key interest I grew up wanting to be the next Larry Bird. So I got my degree in sport management at Seton Hall University to do something in sports. I later got my Master's in strategic communications also from Seton Hall University. So I could be find a full time career in public speaking, speaking in K through 12 schools, but then also to companies about the IRI benefits of hiring neuro diverse and talented individuals with disabilities and understanding undiscovered talent that we have in many of our companies. And then I went back for my doctorate in education, because I realized that I want to do something to educate young people about those with disabilities, because I wish so much time when I was growing up, I had that education. So I got my doctorate in educational technology leadership from New Jersey City University. So hopefully one day I could teach at the college level as an adjunct professor, while continuing my full time work, professional speaking.
KC 3:13
That's amazing. One of the things that you mentioned when you were talking about some of the stereotypes out there, kind of like the rain, man stereotypes, of assuming that, you know, everyone's gonna have photogenic memory, and everybody who's autistic is, you know, going to be able to, you know, recite pi to the 33rd number, or whatever it is. One of my daughters is autistic. And we've just gotten into the age of looking at schools and talking to teachers. And one of the things that I have noticed, and I've remarked to friends of mine is that it seems like everybody over estimates and underestimates her at the same time. I don't know how that's even possible, but it seems like people do both at the same time. They underestimate what you're capable of and sort of infantilize or want to do very heavy, you know, kind of controlling interventions, but then also, there's this overestimation of, well, well, you should be able to do that. Now, that must be just like a behavior issue, or she doesn't need those accommodations, things like that. And so I'm curious what your thoughts are on that, because it's interesting to hear you go right to the stereotypes of sort of like the over expectation, right?
Kerry Magro 4:20
Yeah. And I feel like a lot of the times, we really don't take the time to really think about the spectrum of disability, not only autism, but the perspectives of that there are going to be some individuals who are going to have full time jobs, they're going to be other individuals who are going to need 24/7 care for their entire lives. And that is why when I go into schools, and I do staff development, one of the things I really highlight is the importance of inclusive classrooms and curriculum strategies that meet each student where they are in their own development. Being able to get that type of education outdoor educators, I hopefully A Help with what you're talking about that whole over emphasizing and then under emphasizing at the same time, because again, when we really do come down to what universally will help our kids is meeting them where they are. And having that those reports and dialogues with them to be able to help them reach as many developmental milestones as possible. Because we often say in the communities that early intervention is the key, I don't think earlier pension ends, when somebody turns five, I mean, the DSM five talks about that. But when we're talking about our educational system, I think truly that every single day, we should be working towards that progress, nurturing strengths, and then working on those weaknesses also, at the same time,
KC 5:46
thank you. Okay, so getting into some of these questions. The first part of the DSM criteria talks about these persistent deficits in social communication and social interaction. So do you feel like that sentence describes you? And would you if you were to write the DSM? Would you write that differently? Well,
Kerry Magro 6:03
I think there's still so much debate around the DSM five, I mean, there was so much debate when the DSM four came out. And there are five different diagnosis of autism. And now there's this whole umbrella diagnosis, I think, when we just look at autism, we have to understand that it is a spectrum disorder, it's nothing where I feel like a lot of the times, we, especially with the continuing increasing numbers, we need to really emphasize that spectrum because we pigeonhole our community when we still just realize that communication, social, I mean, especially with the whole rising girls who have autism, girls are more likely to mask different characteristics they have. And you may never know that they are on the spectrum. Like, for example, it made people come up to me today. And they are shocked that I'm on the spectrum because even though I dealt with challenges with communication growing up, I don't have those same challenges anymore. So I think when we talk about the DSM five, we just need to consider it a spectrum disorder or condition and really just emphasize that there are a wide range of complexities and strengths that come along with this condition.
KC 7:21
So when the DSM talks about these examples of like, trouble with the back and forth flow of conversation, trouble with nonverbal communication, do you feel like you know, I think when people read that, they sort of immediately go to eye contact, as sort of the number one thing we think of, and then maybe we automatically go to we talk about back and forth flow of conversation, maybe some of that just kind of monologues at you. Those are sort of the two, I think, more prominent examples that people think of, I'm curious, from your experience, is that what it looks like for you? Or are there other experiences that you've had under those sorts of umbrellas? Yeah,
Kerry Magro 8:02
I had so many different challenges with eye contact. And that's actually why theater therapy was so beneficial for me growing up, I think that it's way more complex than that. It's it's when we talk about autism and associated challenges. I mean, no babbling before six months are everything from the whole aspect of early access to care to what we have today. I mean, there's so many different major major highlights reputation stemming that can be included, and should be included in our conversations. Because I feel like we as a society, I think we've gone a little bit away from eye contact, and F kind of started now, thankfully, talking about more of those physical movements, the stimming, the meltdowns, the overloads, the sensory challenges, and I definitely hope it will continue to have larger conversations around that because eye contact was so challenging, but all the friends that I have who are on the autism spectrum, have perfect eye contact, you would never even know that they had any associated challenges on the surface. But that doesn't necessarily mean that they don't have challenges. All my friends have that quote unquote, like myself and invisible disability where we get that whole, you must not have autism, you're faking that all this nonsense, so Well,
KC 9:21
you know, I've heard from so many people who have taken their child into the doctor to say, Hey, I'm really seeing some autistic traits here, that kind of get dismissed out of hand only on eye contact. Oh, no, they make up they make great eye contact, they make great eye contact. You know, I definitely think that it's good for us to begin to see a wider range, because I think a lot of people also I mean, the DSM is not light reading, and it's not the be all and end all. But even when it does say sometimes, we mistake the examples to be criteria. And a lot of people don't realize that when it says trouble with nonverbal community Asian, it's not just talking about eye contact, like you said, you get a perfect eye contact and struggle more with tone of voice or body language or those sorts of things. So do you recall from when you were younger, and you struggled with eye contact, you know, what was the struggle for you?
Kerry Magro 10:16
The struggle was living by the expectations, the social norms of having to go about that, that actual eye contact, I feel like a lot of the times in our society, if somebody's not looking you in the eye, you just say that they're not paying attention, and they're not interested. When I listen fast growing up, it was when I didn't have to look somebody in the eye. That was the time when my active listening was at its highest rate. And I feel like as a society, you know, these social norms that we have can be very, very challenging in our autism community, we I mean, I still see so many different therapies that talk about, like, there's so much backlash around certain therapies because they're talking about taking away somebody's autistic traits with neurotypical ones. And I just keep thinking to myself, it's like, as a community, I feel like should get to the point where we should just embrace some of what makes us who we are, because many of us in the Autistic community consider autism a huge part of our DNA. But like growing up when I was having those challenges, wasn't necessarily any challenge that I was having. Specifically, I mean, obviously, I didn't look people in the eye right away. But once I started theater and started doing that, I was able to do so much better with it. And that was really the key towards some of my progress. But it was very challenging, though, when people would say like, Carrie, pay attention to me. And I'm just like, I?
KC 11:56
Yeah, so I've heard some people describe some autistic people will describe eye contact as feeling painful, almost, for you. Was it painful? Or was it more that it just wasn't intuitively what you were, would normally do if you were thinking and it was like someone was asking you to kind of do something counter intuitive all the time,
Kerry Magro 12:15
I dealt with burnout quite a bit, especially when I was forced into eye contact, which I was rather frequently until a few years into grade school, it started becoming more of like, I was going into special programs. When I was in mainstream, it was very, look me in the eye versus when I joined a district school for kids with disabilities, it was more just the idea of succeeding in class, regardless of you look someone and I my burnout, because I would consciously and unconsciously, at times, mask my autistic traits by having perfect eye contact. And literally, I would have the goal of looking at somebody in their forehead. Because when you look at somebody, and I learned this in theater, that if you look somebody in the forehead, it's like almost looking them in the eye. But when I was doing that, I would still deal with the same challenges I would have to face that burnout. And I know so many individuals who have so much trouble with that, even to this day, not only in the autism community, but also in the ADHD community as well.
KC 13:22
Yeah, so I have ADHD, and I've experienced the ADHD burnout. What I think is really interesting when I listen to people talk about burnout, and really some other things is that there's a lot of things that we observe, an autistic individual experiencing or struggling with, that really isn't necessarily an autistic thing. It's just a autistic person doing a human thing, right, like anyone can burn out if they are asked to, you know, if you told me that I wasn't allowed to speak unless I was balancing a plate on my head. And so I had to use, you know, five times the amount of concentration to do this thing that everybody else is able to do, you know, with a little concentration, I will eventually burn out. And one of the things that I hear a lot is, that's a human experience. But if you force an autistic person to make eye contact, and to have to engage in that masking, which takes so much energy, they're going to have a very normal human experience to
Kerry Magro 14:20
that. Yeah, I'd have to agree to an except for the perspective that I feel like a lot of the times when we talk about eye contact, when we talk about all these different things, even though some might associate more as an autistic trait. I feel like it my talks I talk a lot about normalizing the human condition. And I say that because a lot of the challenges that I have are just challenges that a lot of people face regardless of ABA disability now don't get me wrong. I'm not like saying that autism is a disability. It is a disability. Whenever somebody says autism is a superpower, I I kind of get a little I like shiver a little bit because it's like, even though some of my core strengths laser focuses are my autism is the reason I have my career today. It's still a disability. So I definitely get what you're saying, from that perspective from some of us just do it because it's it, we're human. Well,
KC 15:18
and I think that we're in that shift right now, where it's been the medical model of, you know, it's a disease, it's pathology for so long, that there's this really empowering shift to looking at a social model of disability where no, you know, everybody, there's neurodiversity. Everybody is different brains are naturally different. It's not about pathology. It's just about differences. And I think one of the things that I'm now learning is that the social model of disability was never meant to replace a medical model, right? Like there, it actually is kind of both and like you're saying, like, there are strengths that come from being autistic from being ADHD from, like, there are ways in which we maybe we don't need to fix someone's eye contact. Right. But like you said, you still have a disability. And I think it's important to honor both sides of that. Yeah, I
Kerry Magro 16:11
agree, I think we can spend a much better time in our schools now, really just trying to figure out what type of learner our kids are versus whether they make perfect eye contact, or they follow every social norm in the world. Because at the end of the day, it's like, finding whether or not our students are kinetic learners, where they learn through movement, or they are facial learners and learn through what they say, are auditory learners, from what they hear, I think that should be our goal. I mean, that's why I do in so many staff developments, especially around this time, when schools are getting ready to go back in is that I educate them about the idea of like, let's focus a little less time on that type of information, let's focus more on trying to find how they can learn the best and help them thrive. And through that transition for every single year for the rest of their lives and academia, and then hopefully after academia. Yeah.
KC 17:11
So when you mentioned earlier masking, and I know from learning from people, that masking is sort of acting neurotypical or suppressing traits and kind of trying to go along with the way everybody else is acting and maybe fly under the radar a bit. And so I know what it looks like, and I know what it entails. But I'm curious for you personally, what does it feel like?
Kerry Magro 17:32
It feels I've always had hypersensitivity. So I've always whenever I mask, it feels like the hypersensitivity goes to an even higher extent, for example, when not necessarily as much anymore, but when I was a kid and I would mask and try to look people in the eyes, I would not be able to pay attention as well because I was always thinking about even those like little noises that would be happening in my classroom people chattering people Becker, egg, people just whispering to one another, and it would feel like all my attention would be going into a million places all at once. And that got very, very frustrating. I had emotional challenges. My parents tried to read diagnose me with a not really diagnosed but tried to diagnose me with an emotional disorder when I was six, when masking kinda was like a new concept that I was learning about because my parents were like, watching all these movies about autism. Now, I like heard the word masking. I was like, oh, okay, I've never heard that. And then I kind of realized even as a six year old child, like, Oh, my God, I'm doing that. It felt so frustrating. It still feels frustrating, even to this day, at some points. For example, if I'm at a speaking engagement for like, a keynote, where like, we have, like 303 150 people, and then they want to do a meet and greet afterwards. And I'm just thinking to myself, like, I actually love getting to meet new people, but the aspect of like, some people, they're there, it's like, don't look them in the eye. And they're like, Oh, he's being standoffish, and then we'll write that as part of their feedback on their form. And I'm just like, it still can get very frustrating when I feel like I have to try to mask to be somebody I'm not especially to stay, even though I don't do it. Like maybe like two 3% of my life is focused on that doubt. And everything really just comes naturally as part of who I am today.
KC 19:27
Okay, so last question about the social aspect. I feel like there's this stereotype that autistic people don't want relationships, or that they don't need relationships. And you know, what are your thoughts and experiences in that?
Kerry Magro 19:41
So this is really funny, because I actually wrote a book on called Autism and falling in love on Amazon, where I talk about my ongoing pursuit of trying to find meaningful relationships in terms of romantic relationships I have seen especially in the past few years In a real shift, we're learning so much more about autism and asexuality, we're also learning for the perspective of that there are a lot of people in the autism community such as the Temple Grandin, so the world went the leading autism experts in the world whose love of their lives, or their work, and their passions and their careers, and they've never sought out any form of romantic relationship. So I think we have to play it a little bit more under the microscope. Because when I give talks, especially towards adult crowds, we're talking about like the future, a lot of the times his focus on housing, employment, post secondary and guardianship. But what about finding those who are meant to relationships? What about helping individuals find love one day, I was so blessed to have the opportunity to work on the first US season of Netflix series love on the spectrum. And especially in terms of our media representation, it's been nice to see a pivot towards more disabled individuals getting the opportunity to be highlight in entertainment, because representation does matter. But I think it's also helped inspire more upper educators to really think about, like, how we can go about building in social skills programming into our curriculum, or more, if you will, because some do the very bare minimum to really help because we are realizing that more people are wanting to be social and either find romantic relationships or even meaningful friendships.
KC 21:30
So you mentioned how important representation is. And I'm curious what your thoughts are, I feel like there's been a lot of representation online, especially recently about autism, and people who are autistic kind of having their own platforms and talking about their experience talking about being autistic. And now more than ever, you can really learn about autism from autistic individuals directly. I'm curious when it comes to the spectrum of autism, one of the things that obviously happens is that if you are very disabled, where you can't use the internet, if you are non speaking, and that section of the community doesn't have an online presence, at least not from a first person perspective, and their caregivers might have an account or something. Do you think that that affects the dialogue and the learning and awkward global understanding of autism?
Kerry Magro 22:25
Yeah, it's tough, because at the end of the day, for those who can't speak for themselves, what I try to do is, I try to continue to emphasize the spectrum because there is, and especially in the, I would say about the past year, this term profound autism has becoming a larger conversation that we're talking about when we were talking about autism spectrum disorders. And the idea of talking about those who have high support challenges, we go into all this language conversation about how you're not supposed to say high functioning, and well functioning. And all this talk now about profound autism. So I think it's important when we talk about representation, people should realize that they are the experts most of the time, and there's a great autism advocate. Her name is Eileen Lam herself is autistic and has autistic child. And she says that something similar to this, most people who are artistic, who are advocating are the experts just in their own autism. And I found that so fascinating. Like what it's a great quote, because it's, I can tell you, from my personal perspective, I'm the expert in my own journey, but every individual is going to be an expert in their journey toe. So when we talk about representation, I really hope, especially in the future, not only in the media and entertainment perspective, that we have more self advocates addressing the entire spectrum, to highlight that it's not just those individuals who can speak up, but there are so many individuals who can't today who need to be represented as well. And
KC 24:03
I think as a parent, that's really helpful information because you want to learn about autism, and you want to learn about it from anybody that knows about it. And you're right, it's not a one to one correlation of Oh, because this autistic person said that ABC was helpful to them or that they experience something in this way. It's not going to necessarily mean okay, I can copy and paste that for my own child or for my own self even
Kerry Magro 24:29
know exactly, I couldn't agree more. So the second
KC 24:32
part of the DSM talks about this Restricted Repetitive patterns of behavior interest in activities. One of the reasons why I'm really excited to talk about this section of it is because one of the things I've noticed in the sort of dialogue about autism, especially on social media, where people are talking about, you know, investigating, maybe they are autistic or learning more about how that autism shows up. There's really heavy emphasis on the social experiences where As whenever we talk about repetitive and restrictive patterns of behavior, I noticed that all of the examples that come up are always of children, or children of child, how a child stems or how a child, you know, maybe lines up their toys or how a child does this. And so I'm curious, you know, what does that aspect of your autism look like today as an adult?
Kerry Magro 25:23
Yeah, I appreciate you so much for mentioning the whole aspect of the child. Because we see this in so many, even academia, manuals and guides and journals to this day, where it's still focused primarily on not only children, but often the time stat K through three or three through five, where it's still focused very primarily on early intervention, where we're not getting to hear a lot of opportunities for education on not only younger children, but then also those tweens, teens and young adults from the ages of 16 to 24. So I think when I think about the adult perspective, versus the child perspective, it's, there is a huge lack of true, there's so many different misconceptions about the perspective of being an adult, because a lot of the times, if you see, for example, if you see a kid stemming, or a kid who is limited socially, you might think that is a late bloomer, you might think something like on that case, but if it's an adult, you just go, it's like, oh, there's something wrong with that individual. There's two different ways of thinking because of the kid and that adult correlation. And you know, it's challenging, especially as a adult today. I mean, I would not, I mean, my challenges as an adult today are still dealing with challenges with transitions at times, still dealing with challenges making friends at time, as well. And then also some sensory sensitivities, I still wear sunglasses in some indoor locations because of fluorescent lights and bright lights. So but that was always what I dealt with as a child, there's still so much lack of understanding for our adults out there who are going through challenges.
KC 27:19
So you mentioned growing up with a special interest in sports is that still your special interest or have there been other ones in your life as well,
Kerry Magro 27:25
as sports was definitely one of the biggest ones I grew up wanting to be the next Larry Bird, I could tell you all 30 NBA teams, and every single player or one of those students greyed out. So sports have continued. I'm a diehard Laker fan, even though we're kind of in the middle of the running right now, hopefully towards a championship hopefully, and LeBrons last few years. But my second love is just music. Even though there is something about sensory and loud noises that bothered me there is always something soothing about music. So I still love music, that's still a special interest of mine, and then also theater. That's kind of how I led to finding a way to go into consulting roles, whether your entertainment world from the love on the spectrums to Joyful Noise film that came out to that 11. Jamie wants a boyfriend in 2013, and two upcoming projects that will hopefully be at the end of this year. So this I think we'd probably I would say are my three special interests that you
KC 28:22
mentioned, struggles with transitions, even as an adult, one of the things that I've wondered about is, as I've been interviewing people, and hearing about their experiences as a child versus their experience as an adult, is that a lot of the behaviors that maybe a lot of the struggles that we see as an outpouring, as a child come along with those struggles with transitions, those sensory issues. And as people get older, one of the things that happens is they get more and more autonomy, and control over their schedule, over their space over their own clothing over their diet. I mean, you just you kind of grow up and you get more control. And so it changes, right like a child who's sitting in a classroom who doesn't have a choice, but to be there that doesn't have a choice of the lighting doesn't have a choice of the ticking clock that the way that that that their autism manifests in that moment, is not going to be maybe the way that it manifests when they are older sitting in their own apartment where they have lamps, and they're choosing to be there and they have a silent clock and a hit right. And so there's this difference in the way that an adult experiences those things or even the way those things look in adults. I'm curious if you have any thoughts or even really experiences like what are the things that you're able to do now as an adult to accommodate yourself that you weren't able to do as a child?
Kerry Magro 29:44
Yeah, I mean, the biggest things are really just being able to speak up about accommodations when needed, for example, such as that I'm going to have to wear sunglasses indoors when there are challenges with bright lights. I mean that that's me talking to them. perspective of when I was very, very young and still minimally speaking to the point where I got a little bit older, and then I was able to speak up and understand that. So I think that's one of the big things, I mean, the other things in terms of those accommodations, being able to go into a company, and I think it's all based on just when getting older, my accommodations now are very, very easier because I'm not in therapy anymore. If when I was in the workplace, working for several different digital marketing companies, I would always have to ask about reasonable combinations, I would always have to ask about this stuff. And sometimes those transitions are very, very challenging. But why I will say about, one of the things I see Well a lot of adults is that even though I mean, they have the ability to have their choices now, especially in our young adult kids who, after the COVID 19 pandemic, it's been really, really hard to help them with those transitions towards making choices because of the social skills that were hindered during the COVID 19 pandemic. And even today, even though we're three years out of COVID-19, it's still quite a challenge for many of our young adults towards making those choices, but then also dealing with the transition of how to go about those choices as well.
KC 31:25
Well, I can't help but think that as an adult, people are more likely to believe you when you say that you need something versus I think as a culture, we have some skepticism. You know, when a child says that they want to do something different than what the rules say, are different than what they're being asked to do. We sort of I feel like perpetually believe that children are, you know, manipulative? And we're so afraid that, you know, what if we enable them or what afford this? And so I can imagine that it's much easier for society at large to trust an adult when they say, Yes, I'll come to this speaking engagement that you're paying me for, but here are some things that I need. So it's interesting to hear how that changes as you grow. Okay, so you mentioned sensory sensitivities. I'm curious, what does that feel like? Because ball, it looks like from the outside, you know, sometimes is someone saying I'm uncomfortable, or some people just kind of having a full meltdown over a sensory sensitivity, but I'm curious what the experience is, whether it's pain or irritation or distraction, or kind of, how could you help me understand from the inside out what that experience is like? Well, it's
Kerry Magro 32:32
gonna look different for everyone. But from my perspective, it feels like it never feels any pain, but it is a ongoing uncomfort going on. In my head. For example, when I deal with bright lights, that hypersensitivity, makes the world around me feel very, very misplaced. My attention goes almost clearly off the rails. And it just makes it very, very hard time for myself. There are some individuals I know who have low sensitivity, where they have very high pain thresholds where they can deal with any form of pain. But when it comes to sensory, they, especially the idea of not feeling pain, it's like all of a sudden, when they are in an emergency situation, dealing with things that they never knew that they could have expected, where there are some situations that really, really have challenges for them. So my sensory sensitivities, it always just felt like the ability to focus but then also just being uncomfortable, it's really hard to like, put like a scale of what that looks like. But I can tell you, it just feels the uncomfort the inability to focus, the if I'm having a challenge with bright lights, then I'll also feel like my hearing will go very often on it will feel like if there are bright lights, then that one moment, things will be very, very loud, then everything will be really, really soft. And it will never be the same thing twice. So it is very surreal and very just challenging experience. But luckily, a lot of those challenges have been overcome today. To a great extent.
KC 34:21
It's interesting to think about what you describe what the audio kind of brings new understanding to the word dysregulate. Like it quite literally the volume doesn't regulate. So I think another kind of stereotype about people with autism is that they that nobody who's autistic likes physical touch. That's like one of the big representations. So I'm curious your experience with that. Yeah,
Kerry Magro 34:47
my love language is physical touch. So I can tell you as a kid, the sensory brush that I would carry around which is basically the size of the palm of my hand, that would use for five to 10 minutes at a time because I never liked paint I just people thought that I lacked empathy, because simply I just didn't want to be touched by other people, when in fact, I was one of the most empathetic children you would ever meet a huge misconception that still impacts so many people in our autism community, because many of the kids and adults I know, are artistic aren't the most empathetic people I know. So from the perspective of physical touch, and everything, when it comes to our community, it's, I feel like this is great now that we live in 2023, that it feels like a lot of the time when all of us were growing up, if somebody will come up and give you a hug, it would be no big deal. It's even if you didn't know them that well, if that was okay. But now, we live in a time where it's like, you have to be very, very mindful of if you don't know somebody, even a tap on the shoulder can be very, very triggering for them, especially as we kind of look at our, the me tube movement, especially over the past few years, and the importance of open communication, and the benefits of open communication, because that's how I see so many of the kids I work with thrive and being able to be concise and being able to have open and honest conversations about their wants, their needs, and whether or not they prefer to be touched or not.
KC 36:15
There's really several things that you said that made me think about the idea of universal design, where, you know, if we design education, if we design accommodations, if we design technology, if we design things, with people in mind that are disabled, it improves the lives of everyone, even people who are not disabled. You were talking about education and how kids learn. And there are like you said, there are a lot of kids that probably concentrate better when they're not, you know, feet on the floor, eyes forward. And it's kind of that what is the phrase about the tide? That raises all ships? I don't know. But it just is going to improve everyone's life. Okay, so my last question is, so I talked to a lot of families of young children who are seeing some things that they think could be autistic traits. And one of the things that I run into is that a lot of those families feel hesitant to seek out a diagnosis. They one family I talked to talked about, you know, I'm just worried about them getting a label, or I'm worried that they'll be mistreated, or I'm worried that they will think they're different. I'm worried that you know, they will, you know, they they're worried about sort of a negative impact of what a diagnosis would do. And I'm curious if you had any advice for parents who we're seeing some of those traits who were wondering, you know, do I get the diagnosis? Do I not get the diagnosis? Do I push for an assessment? Curious if you have any advice for them, or experience or just thoughts?
Kerry Magro 37:52
Yeah, my ongoing comment will be get the diagnosis, as soon as possible. I earlier intervention is the key, I continue to just be amazed by how many people in our society and don't get me wrong, I mean, who wants the best for their child, and when parent is my doctorate, my qualitative research did for my dissertation was focused on early access to care, and how parents went about that formal diagnosis. And what I learned from the qualitative research from semi structured interviews was the fact that, you know, it took a lot of time for some parents to go about getting that diagnosis, because they were looking for a second opinion, say we're looking through all these different research about the developmental milestones when a child should start babbling when they should start speaking in one to three word sentences, or one word and three word sentences. And, again, I can't stress enough we can diagnose autism as early as 18 months. If you are a parent who might be watching or listening to this, definitely think about your child's entire future when you go about that. Getting a quick diagnosis because those first five years are critical, but then also being open and mindful with that child about their diagnosis and never hiding that diagnosis. Because there were so many years when I was growing up that I do not know I had autism, and I feel like it would have been life changing to have known about a little bit sooner. So I could have learned more about my week's strengths and challenges and how I was how that was a part of my learning. Growing up as a kid in school.
KC 39:48
I think there's this misconception that if we don't tell kids that they are different than they won't feel like they're different. When in reality, every person that I've spoken to who's autistic has said I knew I was different.
Kerry Magro 40:01
Yeah, there is a huge misconception about how we look at that whole difference. I mean, I think that's when we talk about neuro diversity, it's realizing that differences aren't necessarily a bad thing. And if we kind of go on that, I think we could definitely as a society, be able to hopefully have those earlier conversations about those diagnosis. So
KC 40:25
last thing I'll say is, I really appreciate you talking about the amount of intervention and therapy that you received and how helpful that's been to your quality of life as an adult. Because we're having I think, some important conversations about what kinds of therapies young kids are receiving. I know, there's a lot of controversy around ABA, for example. And I've seen some people kind of swing maybe too far into, you know, your kid is fine. They don't need anything. They don't need any interventions, leave them alone. They're perfect as they are, right. But the truth is, is that there are interventions that can increase someone's quality of life. And so if you have any sort of closing thoughts on that, I'd love to hear it.
Kerry Magro 41:06
Yeah, I still see people considering like, challenges as a rite of passage that all kids have to go through, regardless if they receive a diagnosis or not. I think we just need to do a it's funny, you mentioned ABA, because on my Facebook page today carries autism journey, I was commenting on the fact that somebody wrote a comment about how they were calling that ABA obedience training. And I was just so like, I've never had ABA. I know so many BCBAs, who do a tremendous job who focused primarily on not necessarily turning autistic behaviors into neurotypical behaviors by just trying to help individuals succeed, being able to help them with life skills, being able to help them with their own communication and building communication and helping them succeed in school. I think we also society just need to promote kindness a little bit more. And I think by doing that, and just listening to each other, and always getting the perspectives of others, self advocates and professionals alike, I think we'll be able to evolve as a society to be able to approach things in a better, more unique way, our rising community because we have one in five Americans who have some form of disability today, one of the largest minorities in not only United States, but the world. But we're often one of the most underserved still to this day. And that's really a shame. I think we as a society can if we embrace one another a little bit more, and listen to each what each other after the sad thing will will definitely have a brighter future than the future we currently have right now.
KC 42:48
Wonderful. Well, thank you. I really appreciate your time and everything that you've shared. Thank
Kerry Magro 42:53
you so much for having me. It's been a pleasure.
Transcribed by https://otter.ai