Breaking Barriers in Adult Autism Diagnosis with Dr. Gregory Skinner, M.D.
Download MP3Hello and welcome to the Neurodiversity Voices podcast. I'm your host Paul Cruz and I'm thrilled to have you join me on this journey of exploration, advocacy, and celebration of neurodiversity. Together, we'll have meaningful conversations, share inspiring stories, and challenge misconceptions about neurodiversity. This podcast is for everyone, whether you're neurodivergent yourself, an educator, a parent, or just someone curious to learn more. My goal is to amplify voices, foster understanding, and spark change in the way we view and support neurodiversity.
Paul Cruz:I'm so excited to have you as we celebrate the beauty of diverse minds and work toward a more inclusive future. So sit back, relax, and let's get started. Welcome to the Neurodiversity Voices podcast.
Paul Cruz:Today I'm joined by Doctor. Gregory James Skinner, a Calgary based family physician who has become a leading voice in adult autism diagnosis. His journey spans international medical training in Europe, The Caribbean, and Canada, and his career took a meaningful turn when he recognized a major gap in services for adults seeking an autism diagnosis. Doctor. Skinner, welcome to the show and thank you for being here.
Dr. Gregory Skinner:thank you for having me, Paul.
Paul Cruz:Can you describe your journey through medical school and how you eventually specialized in adult autism diagnosis.
Dr. Gregory Skinner:Well, autism wasn't something that really came up in medical school. In fact, I'm not even sure I ever heard the word autism. Psychiatry tended to focus on the core issues, depression, anxiety, not even really into the personality disorders. I started my schooling in Europe, in The Czech Republic, and I completed four years there. And I transferred to one of the feeder schools for The USA, studying up and down the East Coast Of The US for the core rotations.
Dr. Gregory Skinner:Graduated with my medical degree from Saba University. I was able to secure a residency as a foreign graduate in Manitoba and I completed a standard two year family residency there. That left me ready to go into general family practice, which I did for a number of years, but it would be later on after my son was born when I started questioning if I would fit with the autism spectrum and trying to do that within medicine, lots of options for psychology but doing it within the medical system, I had five referrals dead end to nowhere. That was when I started getting in identifying this as an area of need. Also, I wasn't necessarily prepared to return to a standard family practice at that point.
Dr. Gregory Skinner:So, I looked more and more into autism assessment. We have, at the University of Calgary, we have the ACERT program. They run the peers group for social skills training and at the top there we have Doctor. Adam McCrennan, a psychologist, and he recommended a specific autism assessment tool which I have been using and adapting and adding more details to ever since.
Paul Cruz:How have your experiences across different health care systems shaped the way you approach patients today?
Dr. Gregory Skinner:So when I was in The States, depending on the hospital, although we often hear about they have private pay, there is a lot of government covered healthcare, mostly emergency situations and hospitalizations. So it certainly helped me realize the cost focus on it. I don't know anybody who has 2,000 or $3,000 just burning in their back pocket that they were looking for something to spend it on and yet that's what it winds up being when it comes to psychology for autism. As a low employment group, I think The UK National Survey put it at 16% full time employment compared to pre pandemic Canadians had 66% full time employment, so that's a difference of 50. They don't tend to have insurance to help cover those costs, so it is all out of pocket on a poorly employed population.
Dr. Gregory Skinner:So that actually helped with the decision to not just leave it with psychology because there's just no coverage for them. The way I approach patients, I spent four years in a country that I do not speak their first language, so that helped me understand the barriers around being understood in communication and I guess autism would be another reason for people to struggle with those similar barriers. It also helps to recognize other people's challenges that if you train locally and work locally, you may not ever experience in your life. You may not have that experience for years of struggling to get basic ideas across, even while studying a foreign language.
Paul Cruz:What was the turning point that led you from family medicine into building a practice focused on autism diagnostics?
Dr. Gregory Skinner:So for me personally, it would start with that question, was I on the autism spectrum? And of course, the answer remains maybe at this point, but at that time, with all the difficulties of trying to get the assessment, it was also a key time in my life. I wasn't returning to my previous family practice after my paternity leave, So I was looking for a new direction and looking to try something different and certainly did find something different in doing autism. So on the personal side, being unable to access service and realizing that that must apply to other people, looking to you for more direction.
Paul Cruz:Could you share what challenges you faced in creating the Autism Exist Diagnosis Clinic and what changes it's brought for patients?
Dr. Gregory Skinner:So challenges in creating the clinic, certainly costs. It's not as profitable business wise. You can't really push people through quickly to try to keep up with your overhead. So for a number of years, I was working alone and unsupported beyond somebody managing the financing. Well, I should say the accounting would be a better word.
Dr. Gregory Skinner:So working mostly alone, trying to manage both the phone calls, the referrals, which for a number of years I didn't I eventually gave up because I was getting so many referrals and I was spending more time telling them we're not a referral clinic than it would take just to accept the referrals. There's a lot of barrier around other people's beliefs, whether they are professionals, medical personnel, doctors or psychologists, their personal beliefs around autism or their beliefs around a family doctor doesn't have the qualifications to do that despite the fact that I've got multiple hours, multiple courses. I've taken the ADOS and ADIR training, the two tests that psychology generally relies on. So, disbelief that the person in front of someone could be autistic, you'll see a lot of disbelief around it. It often feels like they don't quite know, other people don't quite know what this thing is and they will use a minimum of knowledge to make it so they don't have to go any further.
Dr. Gregory Skinner:They can just excuse themselves based on, You can't be autistic. You made eye contact once. Yet, if you're smart and you get told over and over and over and over as a child to make eye contact, you might start making eye contact even though you hate it or struggle with it. So second part, what changes it's brought for the patients? Again, if people had lots of money or lots of insurance, they might be able to approach a private psychologist for autism care.
Dr. Gregory Skinner:For kids, there's lots of access for those things, but what about for all the people who were in the subtle but significant range, the Level one social communication where you might not notice right away but over time you might start to realize this person is different? So, for those people, a lot of it's validation. Some patients are concerned they're autistic but many more of them are convinced. Sometimes, even the way they tell the story of what they did when they thought they could be autistic and it became a new obsessive special interest or if you're not autistic, what we would call a passionate hobby. I thought I might be autistic, so over the next couple of months, I studied for hour after hour after hour.
Dr. Gregory Skinner:When they're bringing me articles I've never heard of as a part of their studies, I say, Okay. They're certainly showing a deep, intense interest, a preoccupation with their new area of autistic interest. So, of them are pre convinced and they're just looking for validation. The fact that I'm using a replicatable, transparent tool where you can see what the decision was, notes backing up why we made that decision so that when somebody else offhandedly says, You can't be autistic or You don't look autistic, that's something that I always love to hear people getting told because autism isn't a facial abnormality. It's not an invisible difference.
Dr. Gregory Skinner:It is a visible neuro minority. It's visible because these people keep getting discriminated on from jobs, so people are seeing it, but it's not color, it's not race, it's not language, it's social ability, it's rigidity, it's executive and adaptive problems. And people see it and people marginalize people over it. So people come to me and they find out, yes, mostly yes or no, sometimes no, they're not autistic, and then we try to at least get them direction to what we think it might be. Sometimes personality disorders, sometimes it's only ADHD.
Dr. Gregory Skinner:I had at least one case where it was only bipolar disorder. One or twice that I've had people who were only borderline, although more often I think borderline was a placeholder for they don't know what it is and we remove that label or we tell people, Congratulations, you lucked out and have both. Unfortunately, though, they go externally and they might get their autism diagnosis invalidated by a professional and they might also have the professional hold steadfast onto something that's still listed in the hospital systems even though we've gone through the criteria of the label to prove they don't have it, even when sometimes the diagnosis was made based on just a few minutes of assessment in hospital and yet that is held with more value than a formal review of the criteria.
Paul Cruz:Walk us through your diagnostic process. What makes your approach unique compared to traditional assessments?
Dr. Gregory Skinner:So a lot of the time, people are getting the ADOS, which is a semi structured interview. By adulthood, a lot of that's more about just the conversation. It's not involving playing with toys, trying to get them to respond with their name, stuff like that. There's less and less of that semi structured interview that applies to adults. They also will do typically the ADIR, which is the interview of the parents, a three hour structured interview looking for features that the parents would identify.
Dr. Gregory Skinner:In order to do that approach, though, psychologists are required to do an IQ test to determine where to send them next. In terms of what I'm using, it's the first recommendation in the NICE guidelines, N I C E, was at the National Institute for Health Communication Excellence out of England and they recommend for intellectually intact adults using the adult Asperger's or autism assessment tool and it's much more on the interview style. Sometimes I do need to extend out to relatives, to partners, to other people to get additional information, but for most people, we can rely on self assessment both in the questionnaires and in the discussion. The ADOS and the ADIR have formal scoring sheets. On the adult Asperger's or autism assessment.
Dr. Gregory Skinner:It was a summary, Do you qualify enough across the different categories? What I'm doing even different than that with my Autism Spectrum Evaluation Tool, which is DSM-five, autism spectrum disorder, update to the old Asperger's tool. The symptoms are reordered. I've added in additional autism and other questionnaires and it actually now breaks apart multiple little features so that we can really make sure that when we're talking about something like, Did you share as a child? What does that mean?
Dr. Gregory Skinner:Did you share food? Did you share toys? If you saw something interesting, would you be bringing it up to your mom or your dad? You found like a pencil and you're five and like, Look, mom, isn't this cool? Versus you don't share those things.
Dr. Gregory Skinner:So, taking it apart at an in-depth level, trying to bring this more accessible to more and more people. My hope is that the average psychologist with some basic autism knowledge would be able to do a fairly robust job with this tool and review all the things that need to be considered rather than just an off the hip, You look normal to me the first time I met you. Diagnostic process, it is multi hours. I think I'm averaging nine hours assuming that the person is good at organizing themselves and it is just interview. There's also a few physical exams which all relate around social.
Dr. Gregory Skinner:For example, my decision on is your posture socially normal? So, proper good rigid posture, but actually the typical comfortable slouch people do. So I'm watching the eye contact, how they use it, how they respond to being spoken to and a few other things related to that. Although a lot of those, again, they may have learned to camouflage as kids. So it's back to the history, back to how they were different as a kid, back to, Are you thinking about eye contact?
Dr. Gregory Skinner:Versus most people who just make eye contact. So, Paul, if you are the average neurotypical not autistic person and I said, What's your strategy for eye contact? The average answer should be something in the confusion range of, Am I supposed to have an answer for that? Versus if you can tell me what you're doing, Compare that against the history, did people get told about problems with their eye contact? Look at me, look at me, look at me, you're not paying attention.
Dr. Gregory Skinner:For goodness sakes, look at me. Or more modernly, think about me with your eyes. Your eyes are like arrows.
Paul Cruz:How do you handle cases where autism overlaps with ADHD or other conditions like Border Personality Disorder?
Dr. Gregory Skinner:So for ADHD, the current estimate is at least fifty percent to seventy percent of people who have autism spectrum disorder will qualify for ADHD. And that's a change if you look at the DSM IV, they were talking about it like you weren't allowed to have both. Some people, by the way, were told they couldn't be autistic because they had ADHD however, when you read the criteria, it says you're not allowed to diagnose ADHD during the course of autism or Asperger's. What that meant was back then you rolled in the ADHD symptoms to the autism or Asperger's label. Today, we're more in an era of you diagnose each label itself separately, so if trying to figure out autism for ADHD, it really comes down to symptoms that are beyond what the ADHD would explain.
Dr. Gregory Skinner:So, if you are let's use the words let's pretend we can use the word fidgeting to describe the moving behaviors in ADHD and stimming to describe those exact same behaviors but when you're only autistic. Oftentimes, what we're going to see is symptoms that you wouldn't tell apart. The way they tap the fingers, the way they play with their pen, you often wouldn't be able to say that's clearly outside the range of ADHD. Now, if I have somebody who is rubbing or flicking their fingers in front of their face repetitively, now we look like we've left ADHD behind. That's more extreme.
Dr. Gregory Skinner:Or if somebody is spending hours flicking light switches or tens of minutes flicking light switches, or as a kid, they've got in trouble over and over and over because they just sat there and flicked the light switch on and off, on and off. That's not something standard to ADHD. In the autism label, there's lots of categories of things that aren't ADHD. So, people might have trouble having relationships because of the impulsiveness, especially if they don't have good emotional regulation, but they wouldn't have the same missing people's emotions while paying attention. They might miss them because they were distracted, but they won't be blind to it while they're fully attending to the other person.
Dr. Gregory Skinner:So going across different social symptoms, ADHD wouldn't explain why somebody was intolerant to physical touch from loved ones if the autistic person had that symptom. Also, on the restrictive, repetitive, and rigid side, special interests aren't explained within ADHD. You kind of have to stretch the ADHD label to explain somebody having obsessive interests in things. It certainly doesn't explain the overly ritualized or routine behavior patterns or the idea that foods are not allowed to touch on a plate, for example, throw out the plate or just eat the safe food that's not contaminated. So you look around the labels, basically what's left.
Dr. Gregory Skinner:If I blame everything I could blame on ADHD, do I still see significant autism symptoms? You also mentioned borderline personality disorder, and that is one that does seem to come in more often. There's a question that doesn't have an answer. Why is it that women tend to get borderline personality labels and men tend to get autism labels? There's no good answer to that, but this is one of these quandaries that's out there.
Dr. Gregory Skinner:Is this where people put, Okay, this person's weird. This is what I know is weird, so I'm going to call you that, but you don't quite fit. I've had actually similar for not borderline but bipolar, where because autistic people might suddenly shift from their resting face where they tended to show one emotion most of the time into another intense emotion, people will label that bipolar, but bipolar is quite the opposite. Bipolar is days of one mood, so that's when it's easily thrown away. Back to borderline, when the borderline person has the feature where they're very up and down about their own self worth versus how they value others, when they're trying to judge the other person's emotions and meanings, they are very precise.
Dr. Gregory Skinner:They keep hitting the same target but they're hitting the wrong target versus autism where from this model, you're trying to judge the other person's emotions and what they mean, what their intentions are, it's more like you're shooting wildly unless you can get them to tell you with words that are actually what they mean or the other person is showing intense emotions. They're crying, Okay, I know you're upset. Probably. Or they get the other person to tell the story of what led to their current state because they can understand the story. They can't necessarily just look at the person and feel those micro expressions to get a pretty close read on the starting point.
Dr. Gregory Skinner:Borderline people are able to detect those small microexpressions, but they are more in the misinterpreting them consistently rather than blind to them. So, just like with the ADHD, you look for what's left. We've satisfied enough for autism. What about the borderline? Is there significant symptoms of borderline still that are not explained in the autism label and vice versa?
Dr. Gregory Skinner:Are there significant autism features that can't be explained away by borderline? You can do the same with borderline and ADHD because both of them can be impulsive. But if you're an inattentive ADHD person, that's not going to be explained by borderline.
Paul Cruz:Many patients describe their diagnosis as life changing. From your perspective, what makes that moment so impactful?
Dr. Gregory Skinner:Yes. And yes, people have me. It always makes me a little uncomfortable to hear more than just a simple thank you, but many people do describe that. Most of the people are fairly convinced to completely convince. Some people are worried.
Dr. Gregory Skinner:Some people don't want to be autistic, but the majority of the people that are coming to me currently, they're coming because they were the one who brought it up to their doctor. And it validates their experience and it validates why they struggled. Some people are tearful over it, but they're just thankful that this answers that unanswered question, you know, Why am I weird? Why am I different? Or as one man approaching 60 said, Is this why I've been homeless since high school?
Dr. Gregory Skinner:And not being able to access any help or any direction. Think about that guy he's been homeless for the majority of three decades, four decades, three decades. And after that, was able to get Assured Income for the Severely Handicapped because we were able to label what he had been struggling with in a way that other people could understand it. Most people, the struggles with maintaining friendships or a history of bullying, struggles inside their own family, they often feel like the pieces fall together and knowing that autism spectrum is this is the kind of person I am, it's a difference. Autism Spectrum Disorder Disorder is the price I pay because other people don't understand, the price I pay because I can't sit all day under fluorescent lights.
Dr. Gregory Skinner:In my office here, the LEDs won't work in these fluorescents, these fancy, fancy fluorescent boxes, so I have to use fluorescent lights. So the ones right above my head, I've taken the bulbs out so that at least we're not staring at this sensory trigger for many, many people. So it's a lot about the catharsis of knowing who you are. Sometimes it's about accessing programs, although many of those programs are quite resistant. The disability tax credit about three years ago became easier to get again and they also added specifically nonverbal communication as a section.
Dr. Gregory Skinner:Autism is the disorder of nonverbal communication. The only other disorder I readily think about is nonverbal learning disorder. And when patients come to me questioning autism and having a history of nonverbal learning disorder, that was like code they didn't recognize autism back then. So, disability tax credit, although the acceptance rates are quite a bit lower because technically they did put a core feature on that every autistic person should have or maybe it's called 99 plus percent should have because there's a wide spectrum, right? But almost all autistic people should be disabled in nonverbal communication and that's a section on the tax credit.
Dr. Gregory Skinner:People who are in the struggling to succeed category, this might be their one direction to help the programs. Some of them have applied to ACE three, four times the Assured Income for the Severely Handicapped here in Alberta. I know that BC has its own similar program, but if they've applied before but without the label, they often don't succeed because their other labels are considered treatable. You don't treat autism. That would be like saying somebody has to be treated for being homosexual.
Dr. Gregory Skinner:It doesn't make sense. Now, will be consequences in people's lives in both cases, and you might have to deal with those consequences. Depression, anxiety, those need to be treated. Masking. Some people want to learn to mask more.
Dr. Gregory Skinner:Lately, I'm hearing more people who want to learn how to stop faking being normal because they're exhausting themselves. They want to learn what they used to do to stim, to release the stress so that they can function better. So the impact, there's many, many different ones, but the main one is being recognized. There's a reason. There's a pattern here.
Dr. Gregory Skinner:This is a real thing. It's not made up. It's not all in your head, although the brain is in your head. That phrase always makes me double take it. It's the I'm not wrong and I exist for a reason kind of approach.
Paul Cruz:Since your clinic focuses on diagnosis rather than long term treatment, How do you prepare patients for life after they receive their results?
Dr. Gregory Skinner:That hard part, that lack in the adult community for programs unless somebody is in the low IQ population, what's now called intellectual deficit, I think we all know the social words for all the past labels. So, if you're in the intellectual deficit, then you qualify for the Alberta government's PDD program, Persons with Developmental Disabilities, but that has a strict IQ requirement of 70 or less. So, everybody else, they're not going to find a lot of adult supports out there outside of the few charities. So, I try to direct them to the few charities. Even at their initial assessment, they get a resource list I put together over years and that covers the main charities, it covers off the existence of programs like EI or the Alberta Program Income Supports, which would be our I'm blanking on the name for the American program but it's a minimal income program for survival.
Dr. Gregory Skinner:There's a medical version of it available through the Income Supports Program of Alberta Works here. In terms of preparing them for life, I talk a lot about boundaries and at their diagnosis, they get a letter of recommendations and it talks about you have the right to set boundaries. Blame the doctor. Don't blame yourself. Hey, hey, Doctor.
Dr. Gregory Skinner:Skinner said I need to do these things to protect myself. You talk to him if you've an issue with it. So, trying to socially protect them but also pointing out that maybe socialization isn't two cups of flour in the recipe of their life. Maybe it's more like a couple spoons of sugar or maybe it's more like a teaspoon of salt. They're human.
Dr. Gregory Skinner:They need it, but it's easy to get too much of it. Same thing, setting limits around sensory issues, around adaptive changes. I'm sorry, we have all agreed I'm the person who needs three days' notice for this kind of change. You want my in laws to stay with us for Christmas? I might need a year's notice for that one.
Dr. Gregory Skinner:Do you want me to pull over here so you can go in that store? Some autistic people can adapt. Some of them will have a small autistic overwhelmed episode and have to stay in the car, but they can still do it. And some autistic people will know that's not on the schedule and just keep driving. So being allowed to set the accommodations you require.
Dr. Gregory Skinner:Also, sometimes it's about coming back for employment, like letters to support accommodations, although unfortunately there's a lot of resistance in that field. I find that in the courtroom, it sounds like the lawyers treat a doctor's accommodations as the will of the Lord Himself in terms of, Why didn't you do this? This was clearly indicated. But when it comes to employers interpreting it, in autism, I often find that you don't look autistic thing again. So they really don't want to follow them and some employers have gone out of their way to misinterpret them and then misinterpret the re explanations.
Dr. Gregory Skinner:So people can come back for support for accommodations and sometimes it goes quite well. Sometimes they get their diagnosis and they get their accommodations and now the other people who would help each other out but not that person start supporting that person like part of the team, too. What else for preparing them for their life after they receive the diagnosis? Guidance on the charities and the programs. Most of the people I'm seeing are the people who weren't easy to pick out from a distance.
Dr. Gregory Skinner:So, more severe autism, think about the school psychologist saying, Oh, that's the person right there, isn't it? Versus Which one is my patient? So, the people I'm seeing are the ones who weren't caught previously and a lot of the therapies and a lot of the supports often will aim below somebody's skillset so they don't need to spend thousands of dollars on programs that they might have been better off teaching. I did have one person who took some of the courses that I thought she might be skilled above and she said there some stuff that was quite useful, she said, so opposite to what I was thinking, and at the same time told me that she's now volunteering teaching other people, which is kind of what I said. Should you be taking this program or should you be teaching this program, directing them towards more effective therapies?
Dr. Gregory Skinner:Cognitive behavioral therapy at its core relies on an assumption of ability and what if you don't have that ability? Is it right to call somebody lazy for not sorting sweaters by color if they are completely blind? Are you going to motivate that person to sort by color? It's not going to fix the problem if they can't see the color. So a better approach and I will plug the Ross Green approach, his website, livesinthebalance.org, and if you start under the Parents and Family section and you take his tour, you don't need to be buying his book, although I'm sure he'd be happy if you did.
Dr. Gregory Skinner:He's provided the basic resources of a different approach. If you're not doing well and especially if you've tried motivation based therapy and hasn't fixed it, maybe we need to figure out why you can't do well and work on that problem, which is a lot harder than just calling it motivation. So I direct people in therapy towards that. Actually, I have several paragraphs in the letter they get advising other people what they need to do. Like maybe they need to learn about autism.
Dr. Gregory Skinner:Maybe they need to stop saying things like, You can't be autistic. You're a girl, which I've had multiple people tell me they were told. Yet, even in the past, one in four are women or one women to four men, to say it correctly. And today, we're questioning, is it more like one woman to three men? I prepare them with communication strategies and there's when it comes up how to deal with if you can't get past an interview should you choose to reveal the label because the question is not should I reveal.
Dr. Gregory Skinner:The question is if I always come through the interview looking like there's something wrong with me, do I let the interviewer decide there's something wrong with me and what are they going to come up with? Lazy, crazy, some other derogatory term, the wrong label. You really had to want this job. Oh, right. My face isn't very expressive.
Dr. Gregory Skinner:So, do I let them decide or do I reveal that I have mild autism? I do not think there's any such thing as mild autism. This is a social use of the word for reassurance. The employment numbers are so poor out of social groups is so consistent that at the lowest severity level one, that's severe. At the middle severity level two, that's more severe and the highest severities are even more severe.
Dr. Gregory Skinner:And it's two severity scores. I know everyone's talking about just one score, but when you look at the DSM, there's a social disability label and there is a rigid, restrictive, repetitive disability label. So, two scores. But socially, if you can't get past an interview, you can watch some videos, get some advice on how to tell, which to keep it quick for the listeners would be, It turns out I have mild autism. Identify a weakness because they always like it when you can tell your weakness, so I might take you too literally.
Dr. Gregory Skinner:I might struggle with the lighting, whatever it is. I might struggle with changes in the calendar, but then you got to sell it on the strengths. The keen attention to detail, if that's your case. Maybe don't mention if you have ADHD at the same time. The ability to understand processes, the number of people who just halt the processes and their life is about the process.
Dr. Gregory Skinner:Those kind of things sell your strengths quick, quick, quick. But most people who can get through the interview looking so called normal on the videos I saw from Sarah Hendricks out of England on this topic, she says most people choose to conceal because they're not being hired based on their social skills, although you might say they're being fired over them.
Paul Cruz:What are the biggest barriers adults face in accessing an autism diagnosis in Alberta and how do those barriers affect patient care?
Dr. Gregory Skinner:So, the biggest barriers are access, access, access, and access. There's a small group of psychiatrists in the Edmonton region. I think they're out of is it the Oliver PCN? Anyway, there's a group in Edmonton, and their waitlist, when I last checked it, which has been months, but last time I looked at it, it was I think five years they were citing. And we've closed my waitlist for the simple reason why I don't want it to be that long.
Dr. Gregory Skinner:These people need to know that they need to look for alternative access if they can find it. There's a little bit out there. There's some family doctors who do some autism assessment, a few of them that I have trained, but that's not all they do. There's a couple of psychiatrists I trained, although one retired to BC recently, actually. One psychiatrist I can remember, but oftentimes he sends referrals to me.
Dr. Gregory Skinner:So, accessing the assessment and the costs, the psychology thing where most people just simply don't have the money to pay for a psychologist or else I could be assessed quickly. The wait lists, this is it. These people are hitting a wall. I've had refugees referred to prove they're still autistic so they can get onto programs, but there isn't more me to go around. So, it's about this problem accessing it and everything else is dependent on it.
Dr. Gregory Skinner:If you have depression and anxiety, those are treatable and disability services, disability government programs want you rightfully to have attempted and exhausted therapy options. But if you have an untreatable difference and you're being forced into a world that doesn't accept that difference, doesn't allow space for people of that type because we expect everyone to fit in, get along, respond in the correct way, say hi correctly, understand when I say, I'm fine, but I don't mean it, you're supposed to know that. So, when we have people who don't fit into the rules we've set and we won't recognize their difference and we won't support them as a result. Depression? Go get more therapy.
Dr. Gregory Skinner:Go get more counseling. Try more pills. It takes a lot to prove permanent disability and that's we have to get the labels right at the beginning. So barriers, again, access, yeah, how do they affect it? People can't access really anything.
Dr. Gregory Skinner:The charities have stepped up. I know Autism Calgary for sure and I think Sineve as well. They're not waiting for the people who have this subtle but significant, the ones who slip through. They're not waiting for them to be proven to be autistic before they're allowed to join support groups. They're saying if you think there's a significant risk, we will help you.
Paul Cruz:What are some of the most common myths about adult autism that you find yourself correcting?
Dr. Gregory Skinner:Myths about autism? Well, even just you can't be autistic because is one of my favorite lists. I've even put it into the other people section of the letter people get. Some of my favorites, you can't be autistic because you're a girl, you can't be autistic because enter derogatory term for low IQ here, you can't be autistic because you made eye contact. One person, my personal favorite, they were told they couldn't be autistic because they could sing karaoke.
Dr. Gregory Skinner:The best I can do is that they understood that in the older label, there was an imagination section and they applied that to that section, but many times after the Autism Calgary group meetings pre pandemic, they would go sing karaoke afterwards. So it's not a diagnostic feature. I had one person told by somebody who I thought should have known better, You have the features of autism, but you're aware of it, and autistic people can't have insight, which is nowhere on the diagnostic criteria. The assumption you have to have low IQ. Now, we've come from a period where most autistic people were diagnosed with low IQ on the autism label.
Dr. Gregory Skinner:We went through the separating out the Asperger's for the ones who were not speech delayed and were not low IQ and now it's a single spectrum again. Now it's what is it? It's more like ten percent, I think they're saying now. The experts are saying more like ten percent of people with autism will have an IQ diagnosis, but I've had people told they didn't have low IQs so they couldn't be autistic. Just lots of those.
Dr. Gregory Skinner:Or the famous phrase from I'm not going remember the doctor's name, but the famous autism quote of, If you've met one person with autism, you've met one person with autism. And there you go, that's Doctor. Stephen Shore. I remember from his story that he was labeled as his kid and to keep it as a short, sarcastic version of it, his mom was kind of told to institutionalize him and forget him. That's a real simplification of the true story, but now the fact that he's Doctor.
Dr. Gregory Skinner:Stephen Shore suggests he's done quite a bit better than what they anticipated when they labeled him autistic as a kid, probably because they assumed also low intelligence at the same time. Common myths: empathy. Autistic people can't have empathy. When people ask me about Do autistic people have empathy? My answer is, What do you mean when you say that word?
Dr. Gregory Skinner:Because in autism, the empathy problems are, Can I feel the subtle nonverbal displays? Unfortunately, most people live in the subtle emotional range most of the day. So can I feel those? The answer is generally no. There's the thing called the mirror model where you just don't feel other people's feelings because you're not copying the microexpressions with your brain mirror nerves, the mirror model, and then in autism, the broken mirror.
Dr. Gregory Skinner:So, I need the more intense emotions. Feeling other people's feelings, intuiting them before they're really obvious? No, that's an impairment. Displaying my face right, motor empathy? That's an impairment.
Dr. Gregory Skinner:Other people often claim often claim the resting faces, the resting happy face, resting stoic face, resting flirty face, which can be a dangerous one for a young lady to have, resting bee face, the unapproachable, angry, rude face as just their baseline face, whether they're happy or sad. They just kind of have that for most of their emotions. So sure, that's a problem of motor empathy. But most people mean affective empathy. They mean if you were in a certain situation, what did you understand was happening and how did you feel?
Dr. Gregory Skinner:And would an average group of comparable people agree your feelings were right? If you witness somebody who seemed to be enjoying kicking a puppy, most people will be upset, disgusted, angry, afraid, you know, is he going kick me? Depending on the context. Confused. They'll have a sympathetic desire to help the puppy.
Dr. Gregory Skinner:This is not the time to desire to help that person who enjoys herding animals figure out their problem. This is the time to help the puppy right now. And a test that was designed to show problems of that in autism, it was trending towards autistic people being better at it. They were more empathic but it wasn't powered to show that it was powered to show they were less. So, this entire test misconstrued around the idea that autistic people don't have empathy.
Dr. Gregory Skinner:Now, why can they come across as not having empathy? Well, they might not understand the same situation, you know, if it's too loud and you get overwhelmed and start screaming. But other people might think that's standing next to a jet plane with no hearing protection rather than the quiet of a fan like in this room, the fan going all the time. They might not understand the social situation the same. They might miss obvious cues that someone's upset.
Dr. Gregory Skinner:So they don't think the person's upset, so they're not responding to them the way you'd expect. Also, they might not display it, right? If they have resting, angry looking face all the time and they're concerned about somebody, they might not change that tone or they might only do it with considerable conscious effort. So, people with autism have more affective empathy, probably, at least the same, but probably more. And given that that's the main thing people think of, that means autistic people do have empathy.
Dr. Gregory Skinner:But might they miss your subtle cues that you want to hug? Yes. Might they not understand the same situation at all? Might they realize that you're upset but their experience has taught them they are the last person you should help? So now that know that you're upset, they're scared.
Dr. Gregory Skinner:I only mess this up. I'm afraid. Does that sound like an appropriate emotional reaction if you always feel like you mess something up to have anxiety? Yes, it sounds appropriate. However, the person's expecting you to comfort them right now when you don't because you feel like all you can do is make it worse.
Dr. Gregory Skinner:They don't feel you're very empathic because of your lack of response.
Paul Cruz:You've also led workshops and spoken with organizations about neurodiversity. What key messages do you think healthcare providers and the public need to hear most?
Dr. Gregory Skinner:And honestly, I really should do many, many, many more of those than I do because of the need to communicate about neurodiversity and neurospiciness. The first thing right now, we're still very much at the bottom of the curve of building people's understanding and knowledge. So right now, it's in the phase of getting people to understand it's out there. Even when it doesn't affect your own life personally, it is the definition of other people's lives is what they're living. So, is real.
Dr. Gregory Skinner:Neurodiversity is real. It's always been here and the world we're designing more and more and more seems actually less fit. Think about people who are good at high technical jobs but not good at social. The people who could sit there and place the rivets in the machine all day long. The people who notice the small errors but more and more we're requiring jobs to have high levels of social skill and we've got a group of people who are less socially skilled.
Dr. Gregory Skinner:In the letter for in the referral response, I give some basic instructions to the offices and I can sit here saying, I'm not following my own instructions because I'm not wearing a name tag. But everybody, you know, making it just that much socially easier so they know who they're dealing with by something simple as name tags. I've been in clinics with one light switch for the whole building. How do you control artificial lighting for light sensitive people? Trying to understand that these are differences and it's not laziness.
Dr. Gregory Skinner:Somebody with Level three rigidity could be very explosive to the point they also get a label of Intermittent Explosive Disorder. And trying to help those people have care because if something goes wrong at the reception desk, they're going to get kicked out of the clinic, but they still need to be able to access care. How do you deal with people who can be difficult when you realize that that difficult isn't a choice? It's real. They misinterpret meaning.
Dr. Gregory Skinner:People with autism might not get the same message out of what you said. It's almost like you're dealing with somebody who's not that good in a second language, but you think they're good at it and then they do something that totally surprises you. So I guess the website name for me says it: Autism exists. It is real.
Paul Cruz:Looking ahead, how do you see adult autism diagnostics evolving over the next five to ten years?
Dr. Gregory Skinner:So over that time span, I don't think I see them evolving very much. I think they still seem to be remaining on the same thing. I am hoping that I can move my version of the adult autism assessment tool from Cambridge University back to them and have that as an updated one for Autism Spectrum, my Autism Spectrum evaluation tool, so that that can help the psychologists, the psychiatrists, the family doctors who are going to find this falling on them because at one to two percent of the population, instead of one in two thousand or even older, one in ten thousand data, There's a lot more diagnosis needed than there are specialists to do it. In terms of moving up, you know, twenty percent, twenty five percent. Some studies showing higher in terms of the genetic causes they can identify for autism.
Dr. Gregory Skinner:There was a recent study I have not read yet, but I have seen a lot of people talking about it where they tried to divide four genetic based behavior types of autism. So, genetics someday will play a bigger role. Still, although some people argue it may be all genetic, other people argue there are still environmental factors, so you won't completely explain it with genetics. MRI, I think it was in the front of a Time magazine years ago about the accuracy of a functional MRI. I don't see the health system getting everything set up for a functional MRI to prove or disprove autism diagnosis, and I don't think I've seen that anywhere.
Dr. Gregory Skinner:The diagnosis still remains on clinical judgment and clinical experience. More robust testing. At some point, we're going to have to stop using the current tests because the wording is out of date. The estimates for the non cis, non binary gender identities, If you call it two percent in the general population, then people are estimating twenty percent in the autism population. But we have tests with male data, female data.
Dr. Gregory Skinner:We don't know if we should follow your assigned at birth gender or your identified gender. We don't know. So, newer studies and, of course, newer wording. The old inclusive tests would say, Did he or she? And those were the inclusive ones, trying to remember that there were women.
Dr. Gregory Skinner:And now, what about other people who don't feel like they identify clearly into he or she? Still, in ten years, probably much the same tools.
Paul Cruz:Finally, what keeps you motivated to continue this work, and is there a particular patient story that reminds you why these matters?
Dr. Gregory Skinner:What keeps me motivated is the need, is knowing that they don't really have anywhere else they can afford to turn to and the coming back to it. Seeing it in families. I've had families where I've identified autism in the mom, the brother, and the original patient and then you look into the kids afterwards. So many people coming because their kids were identified. The variation.
Dr. Gregory Skinner:I feel sometimes like I've chosen the hardest part of mental health medicine and made it what I do all day long. So, certainly, it's mentally struggling but trying to understand, Should I consider this as different from average? It's never the same person. I have people who, you know, they can't chop vegetables while the stove is running. They can't handle both tasks at the same time.
Dr. Gregory Skinner:I have people who running the microwave leaves them in an overwhelmed state for the rest of the evening, so they have a day ending crisis because they tried to heat up a frozen meal. And these people are coming to me without any support. Some of these things, it's like when you realize they can't do it, it seems so obvious they should be supported. But when you think they just, well, that's weird. Don't you want to eat?
Dr. Gregory Skinner:I think the person wants to eat. That's why they tried to manage microwaving food yet again and then wound up falling asleep in their room after crying for a few hours yet again because they can't manage it. So many little vignettes on different people for what it means for them. People telling me about failed interactions with the police because they were assumed to be doing differently or just made them uncomfortable. I've also had people telling me about good interactions with police, but that struggle of being different, being different at school, it's hard and many people don't see it.
Paul Cruz:Do you have anything else to share with our listeners that we have not discussed, Doctor Skinner?
Dr. Gregory Skinner:Anything else that we have not discussed regarding so many things we haven't discussed, but what's key. If you think about autism at between one to two percent of the people in the subtle forms, that means you know people with autism even if you don't think you do. If you think you could be a person with autism, it's quite possible because it is a very individual diagnosis and there are multiple pictures that lead into it. There is room on the autism spectrum for that so called classical autism group, the people who are severely disabled, and there is room on there for the people who are subtle but significant who've kind of gotten along as just kind of weird. It's easy to be taken advantage of because of the over assumption of sameness in autism.
Dr. Gregory Skinner:I used to try to use the word egocentric to differentiate autism from narcissism, but now I've seen people, experts in the narcissism field, the term egocentric, so I have to focus on over assuming people are the same. If I think I'm trust worthy, I might mistake you as trustworthy, even though our personal history might teach me differently. I fall back on my basic beliefs for other people, and everyone does. This starts in a normal place, but the size of the holes autistic people are plugging their own behavior into is much bigger. I could talk about many other things, but I'm not going to.
Paul Cruz:Doctor. Skinner, thank you so much for sharing your journey and insights with us today.
Dr. Gregory Skinner:Thank you, Paul. Thank you for the time. Thank you for reaching out. This is something people need to hear more and more about, and you're one of the people doing that work. So thank you for all you do for us.
Paul Cruz:Your work shows just how powerful and life changing an autism diagnosis can be, especially for adults who've waited years for answers. To our listeners, if this conversation resonated with you, please share this episode. Don't forget to subscribe to the Neurodiversity Voices podcast whenever you get your podcasts, and even rate our podcasts on your favorite podcast app. If you have any questions, ideas or stories you'd like to share, please feel free to write us or sign up to be a guest on our podcast website at www.neurodiversityvoices.com. We'd love to hear from you.
Paul Cruz:Until next time, take care, stay curious, and keep celebrating the beauty of diverse minds. Thanks for listening to the Neurodiversity Voices Podcast. Thank you for joining me today on the Neurodiversity Voices podcast. As an advocator with lives in the balance, I'll leave you with this reminder: When we collaborate with kids, we don't just solve problems, we change lives.
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