Interview between Speaker 1 (Meg) and Speaker 2 (Matt Lowry)
Episode 51: Strengths-based Diagnostics & ‘The Legend of Autistica’
[Introductory music]
Welcome to the Two Sides of the Spectrum Podcast. A place where we explore research, amplify autistic voices, and change the way we think about autism in life, and in our professional therapy practices. I’m Meg Proctor from learnplaythrive.com.
Meg:
Before we get started, a quick note on language. On this podcast, you’ll hear me and many of my guests use identity-affirming language. That means we say ‘autistic person’ rather than ‘person with autism’. What we’re hearing from the majority of autistic adults is that autism is a part of their identity that they don’t need to be separated from. Autism is not a disease, it’s a different way of thinking and learning. Join me in embracing the word ‘autistic’ to help reduce the stigma.
Welcome to Episode 51 with Matt Lowry. In this episode, we’re going to dive into what a strengths-based diagnostic process looks like for autistic people and the incredible difference that this can make. We’ll explore what qualities parents and other professionals should look for to find a neurodiversity-affirming evaluator when making a referral. And near the end of the episode — this is arguably my favorite part — Matt is going to read us a story that he wrote called ‘The Legend of Autistica’. The story is hilarious because Matt is a great writer. It’s also more than just funny, it helps to illuminate some of the systemic struggles that autistic people face in our world. And Matt, in his story, uses fantasy and satire to showcase what real change could look like.
I’ll tell you about Matt. Matt Lowry is autistic and a licensed psychological practitioner who works in private practice providing strengths-based autism diagnostic evaluations, as well as what he calls autistic-centered therapy. Before we get to the interview, I have something exciting to tell you all which is that Learn, Play, Thrive is going to be offering continuing education courses to mental health practitioners, including social workers and psychologists. This is actually one of the outcomes of this interview, because Matt and I talk about how badly we need diagnosticians who are trained in strengths-based approaches, and we need mental health practitioners who are able to support autistic folks in a neurodiversity-affirming way in their sessions together.
The good news is Matt has the skills to teach that. So, he and Learn, Play, Thrive are teaming up to develop two new courses for mental health practitioners; one on strengths-based diagnostics — this is actually good for everybody, not just mental health practitioners, it’s a course that we all really need in our toolbox — and another on autistic-centered therapy. So, autistic-centered therapy is his own affirming approach to providing mental health support to autistic people. You’ll hear Matt talk more about both of these topics in the interview. Please help us spread the word to every mental health practitioner you know, and you can join the waitlist at learnplaythrive.com/matt. Here’s the interview with Matt Lowry.
Hey, Matt, welcome to the podcast.
Matt:
Good to be here.
Meg:
Yeah. Glad to have you. Let’s start with you. Can you tell us a little bit about your story, both around being autistic and around how you got into your field?
Matt:
Oh, man. So, it’s a very interesting, roundabout thing. I did really well when I was — I did really well on an IQ test when I was a little kid, and I ended up taking some college classes early on and going to UK when I was 14 to work in the physiology lab, and studied desynchronization gonadotropins and how they impact the estrus cycle. And while I was there, it was noted, “Hey, did you know you have Asperger’s?” and I was like, “No, what’s that?” And then shortly after that, I transferred to the autism lab, where I started working with this professor who studied autistic kids. And it turns out that after I did the IQ test, I also — well, I mean, I distinctly remember this, but I was part of all these experiments and like watching 3-2-1 Contact while building Legos and having a conversation and doing all these other tasks. And it turns out that the guy who ran all these experiments was the guy I was working under. So, I was like, “Oh, hey, did you remember me?”, “Oh, hey, that’s interesting.” So, it turns out that I’ve been clearly autistic since at least third grade. But I studied autistic kids when I was at UK, and I’ve been working with autistic people ever since then. As of right now, I’m one of two autistic people in Kentucky who are qualified to diagnose autism and I exclusively work with autistic clients.
Meg:
One of two. That is not very many, but maybe more than in other states. How did — on your website, you talk about doing strengths-based assessments.
Matt:
I do.
Meg:
Which is different from how assessments and autism diagnostics usually go.
Matt:
Oh, yes.
Meg:
Yeah, let’s talk about that. How does it usually go? And why is it important to you to do it differently?
Matt:
Okay, so the majority of autism testing and diagnosing is based on the deviation from being neurotypical. So, when neurotypicals think about autism, they think about a typically presenting autistic, white, young boy. A white boy that likes to line up cars, who has difficulty making eye contact, who doesn’t want to play with other kids. So, they see this as a deficit, because they say, “Ah, this kid should be making eye contact, this kid should be talking with other kids, this kid should be doing all these things.” But the problem is, that that’s just not how we’re naturally wired. It also doesn’t reflect the experience of autistic adults. It takes a lot of things like interoception, and just completely disregards them. It disregards a large part of the autistic experience.
So, coming at it from a strengths-based perspective, we look at what makes this kid one of my people? What is this person able to do? What is this adult able to do? What is anybody besides a young, white, cisgender boy — although I do see young, white, cisgender boys — what are your capabilities? What are your strengths? What will you succeed in? Because especially with special interests, when there’s something that we really, really love, we will go all the way. We love research, we love learning, we love diving into these things that we are passionate about. And when we find something that we’re incredibly passionate about, we’ll be incredibly successful in those areas. And one thing that neurotypicals tend to disregard is that we do have social abilities. We do have social strengths. It’s just that we are much more social around other autistic people because we speak a different non-verbal language. We don’t make eye contact. And indeed, right now, my eyes are flying all around the room as I’m talking, because the way that we focus on the output, the way we focus on speech generation, it takes away resources from other areas because we can only have so many resources at any given time. So, eye contact is not a priority for us. And indeed, eye contact is very largely a Western Eurocentric sort of construct. And if you look at other societies, other cultures, even the animal kingdom, eye contact is a rarity. So, it’s very much an imperialist construct that we don’t really see the need for.
There’s many other things that we are very, very strong at. For instance, a great many of us are hyper-verbal. We are very, very able to elucidate our thoughts through words rather than through, you know, eye contact, through non-verbal cues that neurotypicals understand. And they refer to this as pedantic speech, because we are very specific, very precise in the way that we communicate. But there are other autistic people who are largely non-speaking. My son speaks mainly with echolalia. And if he has a group of words, if he has phrases that are presented as choices, he’ll be able to choose from them and he’ll be able to repeat what he wants to say. And there’s a lot of autistic people who are largely disregarded because of this communicative ability. And when provided with like an AAC device, they become incredibly eloquent because they have many, many things that they want to express. It’s just that they don’t have the wiring to do that. So, I think that, again, coming at this from a strengths-based perspective, what are you able to do? What are you able to say? What are you good at? Where do you fit? What do you want to do with your life? It’s a much more comprehensive and a much more human way to approach autism diagnosing than looking for broken neurotypicals.
Meg:
You know, we’ve been talking a lot on the podcast about strengths-based documentation mission and goal writing, and this is the first time we’ve taken it a step back to the evaluation process. And it’s very similar, because we talk about in our OT/speech language pathology evaluations, describing what a child can do, describing what they’re good at and what they like to do, and even for the things that maybe we gave them the opportunity to do and they didn’t complete the learning activity, describing what happened rather than listing it as some sort of pathologized deficit of, you know, unable to complete age-appropriate X-Y-Z. It’s really easy the way you describe this, to imagine that in the diagnostic process. You said, “This child is extremely good at using words to communicate concepts around X-Y-Z,” rather than, “This child has restricted and repetitive interest in this topic and deficits in non-verbal body language,” or whatever pathologizing language we might use. Can you give a few more examples of what deficits-based language specifically might look like in a diagnostic report and a different take on that same observed trait?
Matt:
Oh, man. So, the majority of people who do these evaluations go by the strict DSM criteria which are deficits-based, including the lack of eye contact, lack of socialization for a neurotypical audience, repetitive behaviors. They see stimming — stimming is self-stimulatory activity, flapping, touching things spinning, all that kind of stuff — they see that is a cardinal sin of autism. And it’s horrifying. Actually, there was this online autism summit promoted by PESI that provided CEU’s, and one woman who was not licensed to provide medication but yet she was speaking on medication was talking about using antipsychotics to prevent stimming. And that horrifies me.
Meg:
That is horrifying.
Matt:
Yes, yeah. You should not give clonazepam to a child to make them stop fidgeting. That’s insane to me.
Meg:
To make them stop moving their body in an adaptive way that helps them regulate their needs.
Matt:
Exactly. Yeah, yeah. And I find that horrifying that we say, “Oh, you’re being disruptive, quit moving.” As an adult, I need to move. I have a chair that swivels and rocks. I keep all sorts of fidgets nearby. I have an enormous emerald that I call my stimrald that I play with because I need to fidget with things. And that’s just as humans, we are not built to sit in a fixed position for eight hours at a time. That’s not how we are constructed. And to see other evaluators write this as a deficit was unable to hold the conversation because — okay, so one of the biggest problems, especially when using the ADOS-2 — the ADOS-2 is the Autism Diagnostic Observation Schedule, Second Edition. And a lot of the ADOS-2 is very, very biased, in that it takes the perspective of the presumed neurotypical practitioner and talks about the deviation from the client from the practitioner, and how uncomfortable the practitioner feels in the interaction. For instance, there’s actually a question, “How uncomfortable was the interaction with the client?” I find that horrifyingly ablest because, again, it assumes that the practitioner, it assumes that the evaluator is the most socially delightful human on the planet, and why would anyone ever have a bad time with this evaluator? And that Lord of Entertaining Conversation sort of perspective is incredibly insulting, because not everybody is going to be delighted by everybody else.
And this approach of having a deficit was of ‘The child is not interested in the things I have to say’. No kidding! A lot of people wouldn’t be, unless you’re talking about the kids’ interests, or you know, the adults’ interest because I evaluate adults too. And there’s a lot of people who say, “I know this is silly, but as a kid, I was really into Egyptology.” Like, no kidding. Egypt is really cool. What’s under the Sphinx? There’s a large empty chamber. We need to figure that out. Why has no one gone down there? There’s all sorts of very, very interesting things that autistic people love to study and love to learn about. And if you don’t touch upon those in the evaluation, we don’t have any reason to have a connection because this is how we bond with people. We love talking about our research. We love talking about our special interests. But if you say, “My, the weather certainly is weather today, is it not?”, “What? Yeah, I guess so. Yeah.” “Did you see the sporting event indoor team?”, “Uh, sure. Yeah.” And that’s the thing. When you approach those sort of things as deficits rather than just natural variations of humanity, you lose a lot in not only the evaluation process, but in experiencing them as a human being.
I think this is where like, you know, the whole double empathy problem and everything comes in because when you take this approach, where you assume the other person is broken, where you assume that the other person does not have these wonderful skills that you have been bestowed with, then you dehumanize them. And when you dehumanize somebody from the outset, that inevitably changes the direction of the conversation. It changes the interaction itself. It changes the evaluation. And you miss so much because there’s a rich world of humanity sitting right in front of you, and you’re not tapping into any of it. And when you see these things like, again, ‘Fidgets and squirms constantly’, ‘Does not make eye contact’, ‘Is unable to socialize’, ‘Does not have imagination’ because you didn’t tap into the right things, it causes a massively pathologizing view of the child and of autism itself, which further perpetuates, you know, the whole trying to use ABA to make the child more neurotypical, pathologizing the kid, putting them in to programs where they don’t get to socialize with other autistic kids. It sets a trajectory for the autistic person for the rest of their life in believing that they’re somehow less than human. And that’s horrifying to me.
Meg:
It is. I really appreciate you turning the mirror back on us, ‘us’ in this case being neurotypicals, or non-autistic people, at least usually doing these diagnostic exams. And how our cultural biases, if we think of neurotypicality as the dominant culture, that we are so eager to impose on autistic people who have their own culture, and we haven’t examined our biases. You mentioned the double empathy problem. We talk about this a lot on the podcast, but just as a refresher for folks who maybe haven’t heard of it before, just a quick recap is this idea that it’s shown in research that autistic people feel pretty comfortable with the social skills and social behaviors of other autistic people. And non-autistic people do great in social situations with other non-autistic people. Same results for sharing information in autistic groups and non-autistic. And when we cross them, both groups report equal levels of dissatisfaction. So, it’s not a deficit of autistic people. It’s a difference between neurotypicality and autistic people. And what you’re describing is neurotypical evaluators who haven’t done their work to understand autism.
Matt:
It’s essentially a cultural difference.
Meg:
Yeah.
Matt:
Because if a white evaluator approaches a person of color and tries to talk about their deficits in not being white, that’s horrifying. And to say, “Oh, you don’t communicate in the same way that I do. You don’t have the same cultural touchstones that I do,” that is ridiculously, horrifyingly racist. And it’s the same approach with autism because non-autistic evaluators have an approach, autistic evaluators have an approach. Allistic people have an approach, autistic people have an approach. And even right now, comparing our different cadence, and rhythm of speech, tone of voice, that kind of stuff, I have an autistic accent, and you have an allistic accent. And this is a thing that allows me to bond more with autistic people because, again, the tone of voice is referred to as monotone, disjointed, pedantic speech with tangential conversation and difficulty modulating breathing as we speak.
Meg:
Well, that’s pathologizing.
Matt:
Exactly, exactly. Because, again, these labels are created from a neurotypical perspective because they — okay, so one of the things that I’ve noticed is that we tend to focus more on the data, which is why we don’t have as much inflection in our voice as neurotypicals tend to do. So, we still do have inflection, but again, it’s not as widely varied. So therefore, from an outside perspective, it’s monotone. And we pause to words, and that’s where the disjointed comes in. And we tend to use very specific verbiage because we, again, we collect words. There are a lot of us who are hyper-verbal. And therefore, we are very specific in the way that we conduct ourselves. If we say, “I’ll be there in one minute,” we are 60 seconds out. We will be there in 60 seconds. So, this specificity is referred to as pedantic. We also tend to go off on detours to explain concepts. It’s essentially footnotes in a written conversation, where if we say, “Oh, yes, I saw a duck the other day, by the way, ducks are the small creatures who,” so on and so on. That’s a tangent that we go on in order to explain our thoughts more thoroughly so that our audience can be kept up to date on what we are speaking of which is a tangent about a tangent, which I find delightful.
And then, we, due to our interoceptive difficulties, we tend to forget to breathe a lot. So, we just have so much that we want to get out and so much that we want to say, we just don’t take breathing moments in the middle of a sentence. So, for instance, [Begin accent] when I speak mainly with a neurotypical audience, I use my neurotypical voice. It’s very slow and very smooth, and I take breaks at appropriate places. My voice also goes up and down as appropriate. [End accent] But it’s not natural for me to speak like that. And it takes a lot of effort in order to code switch into my neurotypical voice. And this is one thing that they found with a study a while back where they transcribe the speech of neurotypical and autistic people, and the content of the speech was undistinguishable from each other. But as soon as you start playing the audio, the autistic people were turned off by the neurotypical cadence and rhythm of speech, and the neurotypical people were turned off by the autistic cadence and rhythm of speech, which, again, leads to inter-neurotype problems. And that’s a big thing that we really need to work on as far as understanding each other goes, because if we can’t get past that, there’s this bias that affects all of our interactions, and that needs to be addressed.
Meg:
Absolutely. I like that. ‘Inter-neurotype problems’, it’s foundational. So, one thing we know is that knowing you’re autistic is very important for people. We’ve heard person after person after person say, “I thought I was bad, I thought I was weird. I thought I was just wrong as like the way I existed in the world. And then I found out I was autistic. And then I met other autistic people, and I realized I was fine. I was autistic. There were people like me, and it was okay to be me.” So, it is important for people to learn that they are autistic. And we live in this world of standardized diagnostic tests and insurance and the DSM. How do you deal with insurance and the DSM?
Matt:
[Laughs] As of January, I don’t. I ran into a significant problem last year, especially with billing for adults, because a lot of insurance doesn’t see the need for an adult to be assessed for autism, because they see it as a kid problem that people grow out of. Because there’s many people out there who believe that people become less autistic as they get older, when that’s not possible due to our neurology. It’s just that we learn to mask, we learn to blend in, and we end up suffering and experiencing burnout because of that added effort to essentially code switch the entire time in order to appear more neurotypical in this world. And doing that 24/7 and trying to blend into a world that is not designed for us takes an incredible psychological toll on us that the insurance companies do not recognize.
So, as of January 1st this year, I no longer take any insurance of any kind, because it allows me to focus on the treatment that people need without inadvertently committing insurance fraud and saying, “Oh, yes, they need CBT,” when actually they need autistic interpersonal therapy, or they need trauma-based autistic therapy because of this. And again, there’s a lot of adults who say, “My child was diagnosed autistic. My kid is just like me. Am I autistic?” And that’s the thing about it, because these twin studies have shown that there is an 80% heritability rate for autism. So, whenever you find an autistic kid, you usually also find an autistic parent. And if you find an autistic parent, you find an autistic grandparent, and so on and so forth all the way up the family tree, because it’s not a random mutation. It’s not a disease. It’s not a disorder. It’s a genetic legacy. This is just the way of our people. We are essentially an ethnic minority that goes back to the beginning of time, and finding who you are and finding the way that your brain most effectively works with the world is incredibly essential in order to understand yourself, into being the most you can possibly be.
Meg:
So, is it possible for people to write less pathologizing and more strengths-based diagnostic report that will get approved by insurance and do meet the medical criteria for an autism diagnosis?
Matt:
I think that it’s possible. For instance, a while back, I rewrote the DSM criteria to be more strengths-based affirming. Because, again, instead of saying ‘Repetitive behaviors for stimming’, just acknowledge that they engage in stimming. Acknowledge that there is rocking, bobbing, bouncing, playing songs in your head, fidgeting; all these things are a form of stimming so you can meet DSM criteria through a more positive lens by just taking the criteria that are already there and acknowledging that it’s a natural part of human variation. But again, insurance companies don’t like to phrase it as a natural variation, because then there’s nothing to fix. Insurance companies are inherently solution-based, and they don’t want to pay for something if they don’t see it as a problem. And insurance companies don’t like the idea that there’s nothing wrong with an autistic person, it’s just that they need to learn how to accept themselves.
And the biggest problems faced by autistic people are internalized ableism, this desynchronization with the rest of the world around us. Because autistic people have a flow, we have a way of doing things, but it may not be the way that the rest of the world operates. For instance, I’ve started to ask my people I see — the majority of my business is doing evaluations, but I do see a few people for autistic-centered therapy. And I’ve asked them, “So, what time of day would work best for you,” because, again, the neurotypical world is based on Puritan values where you rise with the sun and go to sleep at dusk. And we don’t work that way. We have what we call a delayed sleep phase onset because of differences in the suprachiasmatic nucleus. And we like to wake up around noon and go to bed around three or four in the morning. So, doing therapy around eight or nine o’clock at night would be ideal for autistic people. So, I made change around my schedule for that and for the people who already know me, it would be a fantastic thing. But for outsiders, they might say, “What kind of a weirdo does therapy at night? I don’t like that.” So, it’s a balance of meeting people where they’re at versus the expectation of a neurotypical business model.
And that’s another thing that insurance is not yet equipped to deal with. Because the types of therapy that we need, insurance loves cognitive behavior therapy because they love what is called ‘evidence-based’. They love ABA, because ABA is ‘evidence-based’. But the evidence for ABA might include a sample of three kids who stopped stimming when you spray them with vinegar. And it’s horrifying to me to think that there is a quote-unquote ‘therapy’ that involves spraying children with vinegar. For instance, like the Judge Rotenberg center, it’s in the news recently, because of those damnable electronic devices that administer shocks at their maximum 18 times more devastating than a police taser. And they somehow get reimbursed by insurance. And that is horrifying to me to say that there’s this incredibly devastating electrical shock-based program that is reimbursed by insurance, but autistic interpersonal therapy is not. And the, again, the insurance model needs to be drastically overhauled, especially because it’s incredibly biased in a number of ways by the people who run it in order to make an efficient business model. It’s a systemic problem.
Meg:
It is. Matt, what is autistic-centered therapy?
Matt:
Okay, so it’s a thing that I’m working on with other autistic therapists and that’s basically four parts. Autistic interpersonal therapy. So, interpersonal therapy is essentially recalibrating your own social awareness, your own social interaction, because traditional interpersonal therapy from a neurotypical standpoint is, let’s say that you grew up fairly isolated and you don’t really know how to connect with other people and you need this recalibration to learn to appreciate genuine interaction with other people. And if you take this from an autistic perspective, you have like a clinician who says, “Hey, what are your special interests? Are you into Egyptology? Let’s talk about Egyptology for an hour,” and then you get really jazzed about, you know, talking with other people interacting with other people, the endorphins start flowing, your pathways start rewriting. And all of a sudden, you say, “Hey, I’m not really as broken as I thought I was. Maybe I do enjoy talking to people.” And that’s a big thing, because in a world that has constantly misunderstood and misrepresented us, we learn that there are not a lot of people who will get us so we just turn inward. And this is what, for adults, a lot of this is looked at as schizotypal behavior and there are a lot of adults who come in for diagnoses from neurotypical practitioners and get misdiagnosed with schizotypal, bipolar, borderline personality, when these are all just autistic traits that are manifesting in a way that the evaluator doesn’t understand.
So, again, with autistic interpersonal therapy, it’s recalibrating that to say, “Oh, wait, I do enjoy talking to people; I do enjoy this. I can have healthy relationships.” So, another part of autistic interpersonal — aside from autistic interpersonal, is autistic trauma. Because the theory is that we live in a world where no autistic person gets through life untraumatized. The theory is that the majority of autistic traits that we observe are traumatized traits. Because, again, meltdowns and shut downs are examples of autistic people in distress. We don’t naturally have meltdowns. We get incredibly overwhelmed with sensory input, with emotional input, with not being heard, and we get so frustrated that we fall apart. And that is not a healthy way to go. That’s not a healthy autistic person. A healthy autistic person says, “Ah, I’m feeling overwhelmed, I’m going to take step back.” And if we teach this from childhood, then we don’t have that. So, again, that’s a misrepresentation of autistic trauma.
So, you have to come at this from the approach that you do have internalized ableism because at some point, someone said, “I know you can do this. I saw you do this yesterday.” But because autism is a dynamic disability, where our neurocognitive load might be overwhelmed, we might have too much sensory input, we might have too much emotional input, we might have too many things going on at one time in order to be able to focus on a task. And we might not genuinely be able to deal with things. So, we internalize that and say, “Oh, yes, I’m a bad person, because I couldn’t do that thing yesterday. I’m a bad person because nobody likes me. I’m a bad person because no one understands me. No one wants to listen to Egypt.” And that all needs to be addressed and reprocessed and healed. So, that’s a huge part about this.
Another part is autistic advocacy, because there’s so much misinformation out there, about what autism is, about how autistic adults present, how autistic women and non-binary people and trans people and people of color present. Because, again, autism is considered a young, white boy disorder that they grow out of. So, there are countless numbers of women, and non-binary people, and trans people, and so many people of color that are disregarded. Because people of color are more likely to be diagnosed with a behavioral problem, with oppositional defiant disorder, because of systemic racism. Women are more likely to be diagnosed with anxiety disorders, or with bipolar, with borderline personality because of big emotions, because society has this weird sexist thing where you have to have emotions, but not too many emotions. And women have to have this golden zone of exactly how many emotions they’re allowed to show before they’re pathologized or deemed cold. Trans people and non-binary people are excluded almost entirely, because again, and this heteronormative sort of culture that we have. So, the CDC, I believe, the current status is that they believe 1 in 44 children is autistic. But again, that excludes so many people.
And the neat thing about being autistic is that it appears in every culture around the world. It appears in every racial group in every continent. It’s an integral part to the human experience. And no matter where you go, and what you do, where a person’s regional accent is from, we all have this cadence and rhythm of autistic speech and these interests and have these sensory intensities that link us all together, which means it’s just a natural variation of the human experience. And it’s fantastic. But that is something that is largely disregarded by evaluators who don’t understand autism. I once — well, I’ve run into several issues with presenting reports. One time, a local school system, the school psychologist there said that she’s no longer going to read my reports, because she doesn’t believe that girls can be autistic.
Meg:
Wow.
Matt:
Yeah, yeah. So, she’s no longer going to read any of my reports, because she says that’s a fundamental flaw in my practice. So there, every kid in that district whose autistic is now out of luck because, you know, she’s not going to believe that. I once gave a report to a woman and she gave the report to a therapist, and the therapist said, “I don’t know, this looks a little sketchy. I’ve never heard of interoception before.”
Meg:
Oh, wow.
Matt:
Yeah, and that’s the biggest thing that affects adults. Because we forget to eat, we forget to sleep, we forget to take breaks, we forget to go to the bathroom. We just don’t acknowledge our body needs. And that leads into the fourth part of autistic centered therapy, because when you are not aware of what your body needs, you’re essentially driving a car that’s manual transmission with no dashboard. You don’t know how fast you’re going, you don’t know how much fuel you have, you don’t know how much oil you have. You have to make time to periodically stop and check in with yourself. You have to schedule eating, you have to schedule drinking, you have to, like me, have an enormous mug of liquid to drink from because otherwise we’ll go the entire day and say, “Oh, I didn’t drink anything today, I think I might be dying.” And this contributes to our internal sensory overload and contributes to a lot of other health issues.
A lot of autistic health issues can be attributed directly to a lack of sleep. Because not only do we not get enough restorative sleep, we have delayed sleep phase onset, we have trouble getting to sleep, we have trouble staying asleep if we’re anxious, if we’re overstimulated, if we have noise in the room. A lot of autistic people need fans or white noise in order to get through the night. And if you don’t get enough restorative sleep, your body starts to break down and do an abundance of cortisol due to stress, and that causes a lot of other epigenetic changes. And there’s a lot of autistic people who have stuff like fibromyalgia, chronic pain, chronic lethargy, PoTS, EDS, mast cell activation syndrome, and all these other health effects are directly attributed to autistic mistreatment and not respecting our own limitations, not respecting our bodies, not respecting our needs, not knowing that we needed to. So, anytime I find someone who has fibromyalgia or EDS or PoTS, I automatically start thinking, “Oh, hey, I wonder if they’re autistic?” because there’s such a high correlation with all that.
And that’s a big problem in the autistic community with seeking medical help, because if an autistic person goes to the doctor and says, “Oh, yes, I’ve been in ways that I shouldn’t, and I feel tired all the time. And when I stand up, I get dizzy,” doctor who is not familiar with all of these things, will say, “Oh, yeah, well, just don’t do that,” when there’s so many other things that need to be evaluated. There are so many doctors who don’t even know what PoTS or mast cell activation syndrome is. And there’s so many people who have issues with these things. So, the four parts of autistic-centered therapy: Autistic interpersonal therapy, autistic trauma therapy, advocacy work, and essentially automotive maintenance, because we need to learn how to take care of our meat bodies.
Meg:
This is great. I’ll link to your resources on this in the show notes. It really mirrors a lot of the changes OT’s and SLP’s are trying to make in our work, shifting away from teaching neurotypical social skills towards providing access to interest-based groups and autistic only spaces where people can exist more authentically, focusing less on presenting as regulated, showing the external signs of regulation no matter how you feel, and more on interception, learning about how you feel and what you need, and more on identifying the energy required for your work and what you need to do to get there so you can do whatever you have to do in this moment, teaching the self-advocacy process, and then really focusing on basic needs like sleep, as well as using a trauma-informed lens. I love the way that you just summarized that into autistic-centered therapy. So, I’ll link to it so folks can go and learn more about that. As far as the diagnostic process goes, when therapists are referring folks for autism evaluations and when parents are looking for a place to get their child diagnosed, what should we be looking for when selecting a diagnostician?
Matt:
The biggest one would be a referral to ABA, whether or not they make referrals to ABA because ABA is inherently destructive. ABA proper is inherently destructive because I understand that there are a lot of people who bill insurance for ABA, but don’t do ABA because, you know, kids need to be seen. But ABA’s goal is to make an autistic kid indistinguishable from their peers. ABA’s goal is compliance, and ABA was created by Ivar Lovaas who believed that autistic people aren’t human. I mean, this is an actual quote that he’s had. And he also has ties to the Feminine Boy Project, which uses ABA techniques in order to create gay conversion, because he also believed that gay people could be converted into being straight. So, anyone who practices with these is not neurodiversity-affirming.
So, you want to find someone who is neurodiversity-affirming, ask if they’re neurodiversity affirming, ask what that means. Ask about their awareness of autism as essentially a cultural component. Ask about their opinions about autistic people. Ask about women and people of color, ask about trans people and non-binary people, ask about populations that they serve and their perspectives on these. Because, again, I ran into a woman a few months ago who went to a local practitioner, and she spent $7,500 in, I think, 19 hours of testing, where she took like four hours to do an IQ test, six or seven hours to do aptitude tests. And it came back, and the evaluator said, “Well, it seems that you have some autistic traits, but you wore makeup and made eye contact, and you drove yourself here, so you can’t possibly be autistic.”
Meg:
Wow.
Matt:
Yeah, exactly. And that’s the kind of stuff. So, ask about their perception of autism in adults. What do they believe autism to be, and if they approach it from a deficit model, especially deficit model of young boys, of young, white boys, run. Because it is possible to get an out of state evaluation through PsyPack, and there are a lot of autistic PsyPack practitioners. And we actually have a neurodiversity-affirming list of practitioners that we’re working on. I’ve got a — it started to be a local network, then it turned into a nationwide network, and now we have a global network of autistic practitioners. And that’s one of the neat things because not only do we have evaluators, but we have therapists, and social workers, and nurse practitioners, and doctors, and OT’s, and SLP’s. I know an autistic SLP. When I explained the autistic accent to her, she said, “This is fascinating. I need to learn more about it,” so now she is diving into why we have a difference in cadence and rhythm of speech. And it’s fascinating.
Meg:
Yeah, okay, so PsyPack is the interstate pact, where you can practice psychology in different states, right, or with people who are in different states. That’s wonderful. And you said there is a directory, so I’ll make sure to link to that as well. I think, often, folks are going to ask all these questions and come up with ‘No one’. So, there seems to really be a need for better training for diagnosticians.
Matt:
Absolutely, because this is the thing. I went to evaluate someone who’s currently in school, and when they got to the unit on autism, the professor said, more or less, “This is a very complicated subject, and there are many different views on it. So, we’re just going to touch on it and leave it there,” instead of coming at it from a neurodiversity-affirming standpoint, instead of going on the current research that says that our brains are hyper-connected from before birth. And there’s a lot of quackery out there that says that, again, autism is due to refrigerator mothers, or trauma, or mutation, or gut bacteria.
Indeed, we probably do have a significantly different gut bacteria, but that’s due to interoceptive and exteroceptive difficulties that make us have a restricted diet, because a lot of autistic people end up having what seems to outsiders as an eating disorder. But again, it’s due to a lot of complexities with the way that we interact with the world, and that changes our gut bacteria which is influenced by our neurology, not the other way around. Gut bacteria can’t possibly influence neurology. I don’t know why anyone would ever think that. So, yeah, we need much better autism-affirming training for every practitioner in every field of mental health and physical health, because there’s a lot of us out there and without understanding who we are or what makes us run, you miss out on really getting to understand a huge section of the population. And that’s incredibly unfortunate.
Meg:
Matt, you talked about ABA, and we talked about ABA a number of times explicitly on the podcast in a number of podcasts episodes. And I often get this question, “What about the ‘new ABA’?” This is different from what you just mentioned. You and I talked about, there’s folks in the Learn, Play, Thrive community who are like, “I am an ABA provider, but here’s what I do.” And the final analysis is like, “Oh, you’re not doing ABA. Okay.” That is different from folks doing quote-unquote ‘modern ABA’. Can you critique modern ABA that doesn’t look like discrete child training, meaning ‘Do this, get a token,’ get your preferred thing, or your food, or whatever it is you’re earning. Let’s talk about modern ABA.
Matt:
Modern ABA. Modern ABA is aware that ABA was based on blatant abuse of children and usage of electric shocks, and modern ABA doesn’t use the electric shocks but it still has the inherent ableism because the modern ABA practitioners still come from the standpoint of, “I am correct, and I know how to interact with the world, and I will train you to be more like me.” And that still requires 30 to 40 hours a week, a full-time job, for a kid to try to make them ‘indistinguishable’ from peers. It doesn’t pay attention to the child’s needs, it doesn’t pay attention to the child’s goals, it doesn’t pay attention to the fact that they’re likely working with at least one autistic parent. And instead of looking at this from, again, a cultural standpoint, it’s a deficits-based model to try to cause so much cognitive dissonance so that the child will want to be ‘normal’. And I’ve worked with so many people whose kids, who they themselves were in ABA. Oh, a quick sidenote. The average life expectancy of an adult who went through ABA as a kid is now 36. Because we have a tendency to get into a lot of substance abuse and suicide.
Meg:
Wow. You know, I’ve seen the research on PTSD and increase in suicidality. I hadn’t heard that statistic before. That’s alarming.
Matt:
It is. It is. When you consider that we have an industry that is based on the death of our people. Yeah, it’s horrifying.
Meg:
Yeah, and I should say that it’s not just the ABA, right. That research reflects on any therapy that promotes masking.
Matt:
Yes. Any therapy that promotes this inherent, dehumanization inevitably ends up traumatizing us and causing this lack of will to live. Because if you come into this approach that you’re inherently broken, that there’s something inherently wrong with you, that you’re not able to be loved, that you will never be respected, that you will never achieve that which can be achieved by quote-unquote ‘normal people’, that’s going to lead to suicide. And that’s the case for any marginalized group. And its horrifying to see that this is the goal for a lot of treatment. Because if you, again, if you approach autism with a deficits-based model, this is the lesson that you’re teaching the autistic person, that they are, in fact, defective.
And again, new ABA still focuses on the kid being defective and trying to train the kid to be more neurotypical instead of saying, “This is the way of the autistic people. If you want, you can study the neurotypical people. You can study these things from like an anthropological standpoint, and it’s good to know different cultures. It’s fantastic to know different cultures. Just don’t beat down the autistic kid while you’re doing it.” Again, you know, this goes back to the studies with the young black kids who disregarded black dolls in favor of white dolls because they were taught that they were less than, and that’s horrifying. Anytime you find a group that is taught that they are subhuman, that’s wrong. It’s so wrong. Teaching everybody their own values, teaching everyone their own strengths, teaching everyone their own worth, and also teaching about other cultures so that you can appreciate other groups, that’s the only way to build healthy human beings. We need to learn about ourselves, we need to learn about each other. And anytime you learn, you win. Anytime you beat someone down and say you’re somehow wrong, you’re going to destroy someone.
Meg:
Absolutely. Matt, on your website, on your blog, you’ve written the story of your people and called it The Legend of Autistica.
Matt:
Yes.
Meg:
It is so good. And I’d like to ask you to read this in its entirety for us right now. What do you say?
Matt:
Yeah, absolutely. So, the reason that I wrote this is because, again, coming from a cultural standpoint, every culture has a legend. Every culture has an origin myth, right. And in order to help autistic people appreciate who we are as a group, I thought that it might be nice to have a story about us, so.
Meg:
I love it.
Matt:
This is The Legend of Autistica. Every group of people has a myth about their origin. This is the tale of the autistic people. Long, long ago, the world was in chaos. Everywhere, the land was flooded with bright lights and loud noises. Clothes are made of the itchiest textiles available. People babbled in confusing doublespeak. Such were the ways of Emperor Nero Typicles. But, the people of the empire were not happy. The world was chaotic and overwhelming, and the people wanted peace.
“You’re fine!” bellowed Typicles. “Quit being dramatic! It’s not that bad! If you just go ahead and do the thing, you can get it over with!” But lo, the thing could not be done. It was indeed an impossible thing, and Typicles did not understand the people.
Emperor Typicles assembled a council of whichever advisors happened to be available during lunch on a Tuesday. “How can we get the people to do the thing?!” he bellowed.
“Perhaps, Emperor, we need to push them harder,” said one advisor.
“Push them harder? Brilliant!” said Typicles, “What is your plan for pushing them harder?”
The advisor, who again, was as sharp as a bowling ball, for this element cannot be overstated, said, “There are three elements to my plan. First, the plan must be enacted at all times, day and night. There shall be no rest. Second, they shall do exactly as we tell them, for we know better than the people. Finally, the plan must be enacted at all times, day and night. There shall be no rest.”
“That third step sounds suspiciously like the first step,” said Typicles.
“The third step is most important! My plan is so very simple. The people must Always Behave, Always.”
“A simple three step plan. A-B-A. I do like simplicity,” mused Typicles. For the world was complex, and this was simple. A return to simpler times meant a return to simple ruling, and this greatly pleased the Emperor. He paid the advisor well, and declared an edict that the Empire of Typicles would enact this plan.
And so the people chafed. Everyone was unhappy, but this displeased Typicles. “Why aren’t you smiling? You should smile more!” Eventually, Typicles was so displeased that he issued clay masks to be worn at all times. These masks bore rictus grins of the dead, and every citizen of the Empire was expected to wear these heavy smiles, in every situation, every single day. This made the people sad beneath the heavy masks, and they grew silent.
The silence so grated on Emperor Typicles. He demanded an end to the silence, and proclaimed that the people speak every second of everyday. This delighted some people, because they had been silently working on new gardening techniques, and some found several new and shiny rocks. Many had befriended the beasts of the wild and wanted to share images of their furry beast friends. And yet others found delightful books about the myths of the Ancient World… And they all wanted to talk about it.
“No!” blared Typicles. “That is too many details, and I do not understand that of what you speak! Be silent of your gardens and rocks and books. Thou shall speak only of that which we all know! Speak of the weather, but only in generalities. Speak of Sportsball, but again, only in generalities. You shall speak while saying nothing. This is the way of Typicles, and thus shall end the uncomfortable silence forever!”
And so the people continued in their sad silence, bearing heavy toothy grins, and speaking only in pre-scripted small talk, that which actually communicated nothing. The people became isolated, and lonely, and had given up hope that they would ever be freed from the tyranny of Nero Typicles.
Then one day, a warrior appeared.
The legends speak of a warrior on horseback, wearing comfortable clothes, and a hood, and a cloak. This warrior carried with them a number of books, and rocks, and seeds of an untold variety, and was surrounded by a menagerie of the most fearsome, yet adorable, beasts. This warrior also carried broken shackles, which many believe that the warrior themself once wore. Some say that the warrior was a king, named Autismo. Others say that the warrior was Queen Autisma. Still others claim that the warrior was neither, and went by the name Royal Autismix. In any case, the warrior on horseback led a legion of librarians, and scholars, and gardeners, and students of the Magicks.
When the warrior and the Autism nation came across the vast desert and arrived in the Land of Typicles, they took pause. “Why do the people here wear heavy masks?” they asked, “Why do the people speak, yet say nothing?” they asked. “Why are the lights so bright, and the noises so loud, and the clothes so itchy, and the food so slimy?” they continued to ask. Each time the People of Autism asked these questions, the people of Typicles had no answer. It was simply the way things were done. The longer the People of Autism stayed, and the more questions were asked, the more the nation of Typicles questioned whether the Way of Typicles was right at all. Gossip soon spread back to the palace, and into the ear of Typicles. Typicles was enraged. He gathered his finest and loudest and itchiest armor, and assembled his guards, and set off to confront the warrior who led the Autism people.
“Ask not these questions!” he demanded of the warrior. “They serve no purpose! They distract from the toiling of the people! If they continue doing as they do, they will become used to it! This is what is normal! They need to wear their masks, and speak about comfortable things, and Always Behave, Always! And also, take off that hood and cloak, for I cannot tell whether you are a man or a woman, and this makes me very uncomfortable!”
“If your comfort is determined by defining me, that is your own burden,” said the warrior. “I have spent much time among your people. The people say that you do not value them, but you value their work instead. The people say that you do not read books, or listen to experts, or entertain complex ideas. The people say that you force them to do impossible things, but do not understand why they are impossible for the people.”
“You use strange words!” said Typicles. “Can you put your ideas in a simpler format? One that could be chanted easily, or perhaps painted on the bumper of a chariot?”
The warrior sighed. “The world is complex, and therefore thought is complex. In order to understand the world, people need the strength to wield the complexity. The strength of the people is stripped away by these masks, and these impossible tasks, and this behaving. I will teach your people to refocus their strength where it is most needed. We shall plan, and schedule, and reduce the number of steps in tasks, and never again wear a heavy mask. Such is the way of our people.”
The People of Autism cheered. The people who wore the masks were silent, for this is all they had known.
One masked child asked, “You mean we don’t have to wear these things?” The warrior shook their head. The children began to take off the heavy masks and dash them upon the ground, shattering them. The parents, initially shocked by such a sight, then began to also take off their masks and shatter them. This continued until the citizens were all maskless, and for the first time in ages, genuinely happy.
“You cannot take my people!” shouted Typicles. “We shall go to war!”
The warrior smiled, “There is only a war when two groups decide to fight. I see only one group here, and it seems they are not interested in fighting.”
And so, the Emperor Typicles was asked to relocate from his palace, which was turned into a museum, a library, a park to walk with beasts, and a garden, for the palace was big and provided enough space for everyone. Emperor Typicles found a very comfortable life doing color commentary on Sportsball, where he spoke non-stop as he stated the obvious, and no one really cared.
The land of the Autism People was renamed Autistica. The Autistics were proud of their land, and proud of their knowledge, and were gracious and invited new Autistics to live among them.
The warrior left to seek out more Autistics, and would periodically return with new Autistic people that were liberated from other kingdoms, much like those of the former Empire of Typicles. And the person who designed A-B-A was bitten by a goat, then fell into a well, after eating a large amount of monkey poop.
To this day, the Autistics are proud of their heritage. They seek out new things to learn, and work smarter, not harder. They use this newfound energy to educate others, to brighten the world with works of art, and to spread Autistic awareness of the world around them. The Autistic people welcome new members to the Autistic world, and welcome those descendants of the subjects of Nero Typicles who want to join them in the Autistic life.
The End.
Meg:
Matt, that’s so good. It’s not just hilarious — my microphone was muted, because I was laughing so hard during parts of that. And actually, The Warrior gave me chills when they started talking. It’s poignant and allegory, or is this a parable? Dystopian works in general help us see our world more clearly because we can separate ourselves from them a little. It’s like, “God, Matt, when you put it that way…” Right?
Matt:
That’s the thing. I really believe that living a more autistic way is beneficial for everybody, not just, you know, autistic people because we live in a world that devalues important things like books and collections and knowledge. And we live in a world that is designed to grind us all into the ground. And when we learn to acknowledge autistic needs, even neurotypical people can acknowledge their own needs and live more effectively and live happier, more productive lives. Because instead of just focusing on the grind, we focus on ourselves and we help each other, we help ourselves, we help our community, we change the world around us for the betterment of all the people, not the betterment of the system.
Meg:
That’s so true. We touched on a few times in our conversation today how the world is set up for this narrow subset of people, and really only barely. Like, it only barely works for — I mostly fall into that subset of people. And it still sucks in a lot of ways. It still strips me of my humanity on a daily basis.
Matt:
And if that’s one thing that the pandemic has taught us, is that it doesn’t really work for anybody, because we spent like three weeks, and then the entire system falls apart. And that’s, that’s not a system that’s designed to last. It’s a system that’s designed to benefit, what, 14 billionaires, and that’s it. And it’s fairly horrifying that that’s the system that we promote, that’s the system that we value. And that’s incredibly unfortunate.
Meg:
It is. Matt, if people have one key takeaway from our conversation today, what do you hope that is?
Matt:
I think that people need to be more open minded and approach these sorts of things as cultural issues rather than as a disorder. Because there is a culture of autistic people, there’s a culture of allistic people. And the better we understand each other, the better off everyone is. And instead of demonizing, we need understanding, and we need accommodation, and we need to treat people as human beings. And once you start to do that, everything gets better.
Meg:
Thank you. Well, tell us what are you working on now and where can we find you online?
Matt:
Oh, I’m working on all kinds of new things. So, we’re working on all sorts of autistic-centered training led by autistic people. I’m actually working on that with two groups of people right now. I’ve got a documentary that’s coming out either later this year or early next year about a Canadian autistic circus. And we’re going to have a subsequent YouTube series that follows that up, because we shot hundreds of hours of footage, and it’s gonna go someplace. So yeah, that’s gonna be really neat. I can’t wait to see how that goes. Other than that, I’m also working on doing a YouTube series on my own, talking more about the interoception, exteroception, and how autistic people can better take care of themselves. And it’s — oh man, of can’t remember the name that I chose for it — Autistify. So, that’s going to be on YouTube. So, we’re going to learn how to live a more autistic life where you have order and structure and find neat ways to arrange your cool stuff. Because there’s a lot of things that don’t even occur to most people that saves a lot of time, saves a lot of energy, and then you can live a longer, happier life by doing less work. Because, again, I’m a big fan of the work smarter, not harder.
Meg:
Cool. I will link to your website and your Facebook on the show notes so that people can follow you and keep up with your new projects as they roll out. Thanks so much, Matt.
Matt:
I appreciate it. Thank you very much.
[Ending music]
Thanks for listening to the Two Sides of the Spectrum podcast. Visit learnplaythrive.com/podcast for show notes, a transcript of the episode, and more. And if you learned something today, please share the episode with a friend or post it on your social media pages. Join me next time, where we will keep diving deep into autism.
