Autism – invisible and easily overlooked?

Canada provides universal healthcare, but people with autism and their families struggle significantly against many barriers and a lack of service. Support is commonly offered following a diagnosis, but what happens when an individual either cannot get one, or is considered too old for one?
Host Emma Nahmiach speaks with experts about the lack of sufficient support for neurodiverse people, and why diagnosis for children (which is lacking) is so important.

Read the companion article at The Upstream Journal!
The podcast cover includes art from the web site dis assembly,  set up by two of the podcast guests.

Human Rights Magazine is produced by The Upstream Journal magazine. The host, Derek MacCuish, is editor of both. If you agree that informed reporting on human rights and social justice issues is important, your support would be welcome. Please rate the podcast wherever you listen to it, and tell your friends about episodes that you find interesting. Why not consider making a financial contribution to help us cover costs?  You are always welcome to email with your comments.

Transcript

Derek MacCuish:  You may have heard the expressions “Everybody’s normal until you get to know them” and “It takes all kinds,” with their implied messages of inclusion and the acceptance of differences.  For people with autism, that inclusion may take an extra effort on the part of society, and unfortunately that support is often not there. 

In this episode of Human Rights Magazine, Emma Nahmiach looks into the situation in Canada, and the shortcomings of its public health system in responding to autism. She spoke with several experts, including a young graduate student who is non-verbal. Using a text-to-speech process, he typed his comments which were then produced as spoken words.

Emma’s guests agree that more needs to be done, starting with early diagnosis, to ensure that people with autism get support in their neurodiversity.

Emma Nahmiach: Autism Spectrum Disorder is typically defined as a genetic neurodevelopmental condition causing differences in individuals displaying skills or processing of sensory, social, emotional, or behavioral traits. Those who have autism experience it each uniquely on a  wide variety, although there are reoccurring indications that do exist. Canada is especially relevant to speaking about autism within its population, as 1 in 60 Canadians is diagnosed every year as of 2019, and even then these numbers are thought to be underrepresented. 

Experiencing neurodiversity and developmental differences in a neurotypical world, the ideal would be that those diagnosed can be accommodated and supported by society since young, but in reality, Canada severely lacks in outreach for these individuals and their families. Much of the ‘therapy’ offered surrounds a negative ‘remedial’ view of the condition and autistic individuals’ place in society, and those professionals and services that do exist anyways are small in numbers and massively underfunded. If autism is not a rarity, why do public  and governmental programs overlook them as so? 

Here to speak today are three speakers, Deborah Pugh, Estee and her son Adam Klar, and Bruce Petherick, who are all advocates and participants in the communities, experiencing autism themselves or having autistic people in their families. 

Emma Nahmiach: First, I spoke to Deborah Pugh on her opinion of the situation concerning lack of support for autistic people and their families both in her current province, British Colombia, and in Canada Broadly. She also expanded on how the consequences of this lack of support manifest. 

Deborah Pugh was the Executive director at Autism Community Training in British Colombia since 2005. She was previously a journalist and correspondent in Cairo, but upon having a son with autism and returning home to Canada to raise him, became passionate on the issue and a passionate participant in the community for change upon witnessing. Holding its first conference in 2003, Act aims to provide training and information withing communities and those in contact with autistic children to provide better  support in their  everyday lives and futures. They do this through live events, conferences and free online videos. 

Deborah Pugh: “Autism isn't of itself a very diverse diagnosis and because diagnosis is so hard to have, or so hard to get in terms of the waiting lists, and the cost, because often it's privately diagnosed because there's not enough doctors who are trained to diagnose it, because of that, the situation is actually very difficult. It's very difficult in British Columbia with a waiting list, well over two years for children. And it's difficult to even find publicly funded diagnosticians for adults at all. So it's a fairly dire situation right now. And the situation certainly has gotten much worse, through COVID. Across the country, it's a very similar situation. There's no province in Canada that really is providing any leadership anymore about how to how to achieve early diagnosis and ongoing support. 

So I guess one of the things to think of in terms of the reality of autism is it's an invisible disability. And with the right fit of supports, for individual to that child or adult, the person can do really well. Finding out what that good fit is, is not that easy. And so, when there's hardly any funding available, or you know, children have been left to wait for years for a diagnosis, or in the case of adults, you know, people are miss diagnosing them with all kinds of things. That makes the situation much worse. So, a person who doesn't get a diagnosis who doesn't get the supports they need, doesn't just remain as they are this, they often deteriorate because of the pressures of the, you know, social pressures, financial pressures, you know, a family who doesn't understand that this child isn't just naughty, isn't stupid, but has is dealing with a very complex, complex condition, invisible condition, all of those things make it really challenging for families, for autistic adults. 

For schools, it's like, moving through a very uncertain world, where there's lots of opinions, you know, and not that many resources to support the individuals, especially those who have no means of communication. No language, no ability to just naturally develop, right? So when if you're a child who is in a fairly acute position, and you have no access to a speech language pathologist, behavior analyst, occupational therapist if your family has no idea what's going on, or how to help you, maybe you live in a very small rural community, where no one wants to use the word autism for fear that they upset the family and that actually does still happen in this day and age. So, there's those situations there's also the children who were actually very able intellectually but you know, they have a very sensitive sensory system so they're find it difficult to be in a busy school. Often, they're challenged to understand how society works. 

You know, there's a famous artistic adult Temple Grandin, she talks about feeling like an Anthropologist on Mars. And I always thought that was so great because, you know, human behavior is extremely odd supposably typical human behavior, which again, is very, very diverse. But for autistic children, teens, adults, the behavior, the social behavior, is something that is really confusing to understand, you know, why do people do what they do? Why do they like you to look them look at them when you talk, or maybe not that much, it's very subtle, right. And that's why you often see autistic teens and adults withdrawing, because, you know, what we think from reading people's memoirs, is they don't want to feel rejected, they feel uncomfortable in a situation often because they've been teased or bullied, because actually, they don't look disabled in any way. And really, they are not, with the right supports. They don't have to feel excluded, etc. 

But you know, it's a kind of a two way street, we have to increase awareness of what it is to have autism, the diversity of experience. And for those who have autism, we can, you know, we have to help them understand how the rest of the world works. Now, that comes with some baggage, you know, in that sense that many autistic adults tell us that they're, you know, they feel like they're pressured to conform. Women in particular are really good at masking and conforming, and it's very emotionally, pressuring, always trying, you know, to appear just like everybody else. I can't say, here's a profile that fits everybody. But I think that for a child or a teen to have a few adults around them, who kind of can give them that support and guide them around the social, the social realities of, of, you know, here's why people do what they do. This is why you might be running into some problems. 

What we see is that for many Autistics getting a diagnosis, particularly in teenage years or an adult years is a revelation. They're not incompetent. They're not stupid. It's just this is their reality. And here are some things that can help them. When you don't have that self-knowledge about why your life has been so difficult for many, I think it's a huge burden, that unnecessary burden that autistic adults and teens carry. These challenges can lead to and do lead to higher levels of suicide, to chronic unemployment, to, you know, exploitation by others, particularly of young women, autistic women.”

Emma Nahmiach: I really agree with what you said about consistently needing adults around. I have worked a lot with autistic adults over the summer, especially. And I was talking to other people working there. And they said, when they leave during the summer, and they're not around consistent adults who are supporting them, they regress and when they come back to camp, than they just are completely in a different place that they had progressed to. I know that diagnosis and lack of funding are one of the biggest issues right now. But because of the growing issue, why do you think the government has reluctance to help more? Is it truly that we don't have enough professionals and they don't know how to implement that? 

Deborah Pugh: “A diagnosis is a provincial responsibility, right, through the health services, the federal government funds the provinces to provide health services, but it's often the, it's the provinces who set their priorities. I've been working on this in British Columbia for about a decade now and I'm about to retire. I can tell you, one of my biggest failures was trying to convince the Health Authority to at the Vancouver coastal health level, because of course, provinces also divide and give each region responsibility for how they implement. So we've been trying to do this at the level of Vancouver coastal health. And we were getting, you know, we've had a survey of doctors and, you know, the Health Authority was had come up with some strategies, and we were getting really close. And then COVID happened. 

Since then, it's been impossible to get anyone to move it from discussion to implementation. One of the issues is that it takes a lot of time to diagnose and to set up supports for an autistic adult who's saying, Now I'm not talking about, you know, usually a child who is shows significant signs of autism, you know, both behaviorally in terms of communication is usually picked up as a child, right? It's the more able Autistics who in their teen and adult years start showing mental health problems, you know, high anxiety, depression, aren't doing as well as they could academically, even though they have a high IQ, they're bombing out at school. These are the people who take time to diagnose, right. And most doctors now the ways things are set up, you know, you fall, you know, you have a phone call, or even before COVID doctors were reluctant to you engaged in diagnosis of autism, because it takes a while. And then you have to help the person set up supports, right? It's an ongoing process, maybe they maybe they do need medication, because sometimes medication can help. Right. But not in and of itself, it's really best in combination with other with other interventions. 

But the excuse we often hear from physicians is that they don't have the training, you know, but there's very little economic incentive for them to get the training. Because you don't get any more money for seeing this patient who might take you 10 times as many 10 times as much time to help as your average patient who comes in with a bit of anxiety or something like that. So there's a financial imperative. We also of course, have a nationwide shortage of doctors and specialists. And that's been the result of trying to save money by controlling access to medical school. I'm sure you know, lots of very able young people who would be fantastic doctors or psych ologists I mean, medical doctors, psychiatrists, or psychologists or speech language pathologist or occupational therapist, but they can't get into schools here, even though they've got straight A's, right, there isn't enough spots to train them. 

So, to me, that's the huge, you know, one of the reasons I set up act autism community training, I don't know, back in 2003, was because I could see that there were a lot of professionals who had, you know, broad training, but they didn't have any specialized understanding of autism. It is a pervasive problem, it's, it's one that's not going to, you know, I don't think the solution is importing specialists from other parts of the world and stripping them of their resources, which I've always found quite objectionable. It is actually investing and all those terrific young people, we have to train them in, in these professions, you know, including advanced teacher training, all of these things. 

So, I mean, it's not rocket science, it's, it's, you know, we would save, I think, a great deal of money in the long term, if we invested in our professional in professional development, so that we had specialists who could help kids because right now, there's even a waiting list for private diagnoses in British Columbia, you know, months long. So it's just, it's just a really awful situation is actually the worst situation in terms of diagnostic waiting lists that I have seen. In the last 25 years, since I've been involved in the autism community, it is the worst situation.” 

Emma Nahmiach: You just touched on it a little bit. But do you have opinions on what ideal implementation of policy would look like in terms of the vital steps were missing? 

Deborah Pugh: “I think early identification is key, because with a lot of young people, because we know that we can actually change the trajectory for a lot of children with autism, autistic children. But that doesn't mean that trajectory is, you know, you're going to make these children indistinguishable from their peers, what it means is, you know, you're going to help them understand social communication at a very early age, you're going to make sure that they're actually able to attend to language so that they don't, you know, don't end up with a very limited vocabulary, you're going to focus on helping them learn play skills, so they don't feel isolated or alienated. It doesn't look like 40 hours a week being drilled, right. That's not what you do with two year olds. 

And for many children, you'll find that that actually has incredibly profound that this is what the science is telling us has a profound effect lifelong. There are those kids, autistic children for whom this you know, that kind of naturalistic play environment really isn't effective. And that's really, I think what I have to say to people is that you cannot generalize with autism. You have to look at the kid, do an assessment, try some things out, see what works, what doesn't, and kind of leave your prejudices And, you know, put theories behind and focus on the child. And not everyone can do everything was, you know, many, many children are you know many children have, most children will be very successful with quite a light program. it's not punitive, but it's intense. It's not, it's not it's not something that should be unpleasant at any point. 

So I think that what we have now across the country is sort of a ragtag amalgamation of various things, you know, , very few children get help before they're released from a publicly funded system, before they're five, six years old, where the best time would be to help them would be more like linear two, three, and we can diagnose autism now, you know, fairly consistently, in 18 month olds, and that's really, and that's children with autism who are quite profoundly affected. It's, you know, a child who has no cognitive delays and has language but is still autistic is probably not going to be picked up at 18 months, right? 

So again, you can't, there's not a one size fits all. And that's, I think, what we have a problem with in our society, we want to have, you know, the cookie cutter approach to every child. So the child who is very, who has, we can see that they will be have a very difficult life unless we provide them with a really enriched environment early on. The taxpayer will save a fortune, you know, the heartbreak to families will be significant. But that takes long term thinking, and often provincial governments are all about how do we save on the budget right now. I think that the attitude that there are systems out there that are magically going to help these children is pervasive. If you don't have a child with developmental disabilities, you have them, you realize that there's actually very little out there from the outside world. You know, from those who don't have an impact, there is this idea that we live in Canada, we have, you know, we have the Canada Health Act, and these children will be held, actually, they have no right to service.”

Emma Nahmiach:  During my research, I also met Estee Klar and son, Adam Wolfond, who was diagnosed with autism at eighteen months. Starting the organization Dis Assembly, they aim to sustain an experimental and creative space outside of the governmental system that they found has consistently failed them and others, to gather and support each other. Adam is a non-verbal adult, and during my interview with them, Adam spoke through a text to speech device. Adam is also notably the first non-verbal student to be receive a masters from Concordia university and Is currently working on his PHD on neurodiversity and artistic inorthography. They first gave me a general overview on their view of the situation of in Canada, and also expanded on their view of the idea of being neurodiverse in a neurotypical world. 

Estée Klar: “I think that support in Canada is not support. It's really garnered around this intensive behavioral intervention in Canada, which is, you know, we marketed as like the gold standard of autism therapy and services. It has infiltrated literally every aspect of an autistic person's existence, to the point that schools have adopted it and also conceive of autism as disorder and problem. When the internet came online, and the blogs really started gaining momentum in 2003 2004, we saw so many autistic people coming out and expressing how damaging this therapy is, and how anxiety provoking I mean, what, whose right is it to convert an autistic person to be become normal? Right? 

The whole neurodiversity movement is premised on diversity and difference. if we have many different kinds of learning and knowledge is within our school system itself, even maybe it isn't a system anymore, I think we're seeing education and even our conceptions of that evolving all over the map, be it from childhood into the universities, right, that are becoming more corporatized. Just education needs to be access for all.” 

Adam Wolfond: “I think that schools need to invest in understanding people who manage the way I do with supports so that I could do many things.”

Estée Klar: “So I think when Adam, you're saying support, we talk a lot about the facilitation of facilitation, which means like we're facilitating each other. So I've also learned how to Adams movement and through a lot of work and study with others, how certain movement differences in people require touch to activate movement, or to keep consists, you know, like to speak in neurotypical language, if you will, or normalized the language that we speak, which is this standardized English, Adams very skilled at also creating new language or languaging. He calls it, which he has a book, we're having a book launch on November the 10th. 

So we speak a lot more about a new forms. in the context of care outside of these therapeutic, therapeutic thinking, that is seeking to cure or make as normal as possible, possible or make functional before the right of inclusion. So you know, as a system as it is, in this westernized knowledge and system, and the way we do things, is is a system that is hesitant to change. And you're, you're trying to tap on people who have different knowledges, and different ways of moving in the world being seeing whatever, and you're trying to talk them into that, and you calling that integration and inclusion. 

So as long as we have that, and we don't acknowledge diversity in all of these contexts, we're going to think of disability autism, as on the outside needing to fit inside. And that's always going to precipitate cure and remedial therapies, I think. We have the advent of special education, which seemed really great with Maria Montessori. But it was really meant to also segregate with this is same idea that's infiltrated today, we can teach kids to their potential. Now, all of these tropes and these, like, instead of acknowledging what diversity brings to our world. And so we need to rethink what diversity means. And not think about diagnosis as a means to cure remediation. But how can people be supported, right? So that's, that's much easier. 

And once we got out of that system, our lives just went boom, like, it just became so much enriched, like now Adams, doing a matt, you know, master's degree at Concordia University, you know, the first non speaking Canadian person to be University in Canada, because we've been able to kind of circumvent and make these arguments about how Adam has been excluded. Because of these barriers.”

Adam Wolfond: “reach the people to vary the ways of love and support the ways we think about care outside the system. Should people be locked up for being disabled? No, they should not they can be very helpful, the way my attraction for the starting a movement for liberation”

Estée Klar: “I do think that we need to rethink support practically speaking, like, supported communication, you know, that ABA will not teach us what how I taught Adam to to use this device. That's a really simple accommodation that could be made and taught across the board. When people are really, really anxious, what does ABA therapists despite their proclamations that they're wonderful, you know, forcibly lift kids off the floor, forcibly move them to another location. And it's, it's, it's really hard to watch, you know, and Adam, I think when you speak more, but when you were anxious, we just shut that whole thing down. 

And, you know, we sat together a lot, we required together a lot, until, you know, you can work beyond that, but if I left that to a neurologist to a doctor or anybody else, I'll tell you what happened. They tell me to call the police. Why am I going to call the police on my child or why am I going to come Oh, well then he needs to go on a psychotropic medication. Why am I going to put them on that? These are these are our solutions and our culture right now because we're impatient. And we have an attitude that our kids are are wrong and I would challenge anybody who would say that I've never experienced or Adam has never experienced some real hard moments that you know that other people express we've gone through a lot. So I just want I have to say that because people have always blamed us for not having the same challenges we teach people two.”

Emma Nahmiach: Next, I had the pleasure of speaking with Bruce Petherick from British Colombia; a sound designer and a professional musician who has toured the world. He was diagnosed with autism later in life as an adult. He is currently worked with Autism Canada as a autistic advocate on the issue. I first spoke to Bruce about his and Autism Canada’s view of the current situation, his experience, and what he feels like could be done. 

Bruce Petherick: “They (resources and support) are lacking in general. And they are severely lacking for adults. So although we have we have some supports, we have some access for newly diagnosed children. It can be better all across the country, they can be better, but at least they are there at some level. 

Unfortunately, let me get to somebody who is 18. Fundamentally, they all disappear across the country. And you have people like myself who I was later diagnosed, I'm seen as needing lesser regular support, then some other autistic people. And there's fundamentally nothing for me at all. And in fact, people like myself, are missing from statistics, no one records, the number of late diagnosed adults who don't then go on to need specific government support. 

So lack of lack of support, lack of access across the country, and then amazingly large holes in our data collection. And let us also bring in the lack of representation in the bipoc community, in general for autistic support, and diagnosis. And of course, still there is a gender imbalance.” 

Emma Nahmiach: my sister got diagnosed very late, she got diagnosed at 18. Especially I think it's harder because she's a woman as well, so I can hear what you're saying. What do we mean bybetter by better resources, since the variation is so, well, varied?

Bruce Petherick: “We need much better access to diagnosis across the country. We need a system that ignores provincial differences when it comes to diagnoses because we also have problems with certain provinces expect this and other provinces expect that we need a national strategy when it comes to things like that. But it's all to do with access to diagnosis is super, super important. Once we have that diagnosis, then we're looking for more broad approaches to support. 

So often, support is seen to be focused on those Autistics who need highest we call higher support need Autistics, maybe those people are non-speaking maybe those people who have difficult behavior problems will have severe lack of social communication etc, etc. There are some resources available for those Autistics, but we need a broader spectrum we need we need those resources available for let's let's just say, every autistic is nonspeaking at some stage in their life. Every autistic has problems with social communication. Always. It's just it's an intensity, I use the word intensity a lot. Every autistic has sensory differences. And those sensory differences change in intensity over time. And that time could be in an hour, in a week or in years. We need supports that recognize, since that happens, it's always good to be talking from my personal experience because that's where I'm stronger at. But I can generalize a lot of this. 

So I have hyper acuity aural hyper acuity, which means that I can hear sounds at a much greater level, then I took a typical average person. In my previous career, I was a professional musician, recording artist, toured the world, that was incredibly useful. The negative side is it's almost now impossible for me to do shopping in regular department stores, because there's so much background noise, there is so much the music is too loud. The cavernous areas, there's echoes, and it's incredibly disorienting. So the only way I can go shopping is to have noise cancelling headphones on. That is not fair. 

We always make this invisible, visible disability discussion. If somebody is in a wheelchair 101 of the world would never put a barrier in us in a store, they wouldn't put a ladder down the aisle. So at a certain height, so a wheelchair person in the wheelchair could couldn't get through. Everybody is aware that when they see a visible disability, but there's some put some supports differences than the those of us with invisible disabilities are ignored. 

So we're looking for things like much more sensory friendly spaces. And the reality is, that may mean, please, can we have an hour or two in a shopping center every week or every two weeks where the lights are turned down? And music's turned off? In one respect, that's a simple, that's a simple thing to request. But we can then generalize that across the expectation, for instance, in filling out government forms, that, that we can comprehend a lot of complex information a very short period of time, where in fact, very often that's incredibly difficult. 

Fundamentally, autism is a lifelong condition, which is often I think people forget, we don't recover, we don't get better. And basically, none of us want to get better. I am different. I'm different from you, I love the fact that we are different people, because maybe some of my differences are autistic. That's part of me, there's no difference. There's no line B, where I am not autistic. It's one continuum. 

So the lack of early interventions, a lack of access to resources and supports affects us all through our lives. With adults, where we're assumed that we've learned those skills, and to a to a greater or lesser extent, we probably have learned some life management skills, how to how the world works. But it's still so difficult when it comes to people expecting a certain behavior. And it's always good to remember that. 

Again, let's say in an average adult, average autistic person, they may have learned, this is what this means. This is what this means if somebody is kind of looking this way, this is what it means. For us, it's a cognitive effort to recognize that. So every time we were involved with social communication, there's something in that our brains are working going oh, this means this this means this this means so you need to remember this, you need remember this, were for neurotypical person, all that's internalized. It's it becomes automatic. 

So it's draining. It's so tiring for the average adult autistic to get through what neurotypical people would think is just an average day. So it's, it's come to things like that. It also comes down to it Again, I'm going to say, I understand I don't need supports all the time. But when I do need those supports, they don't exist. And that's, that's as bad as they're not existing. I mean, not exhibiting at all for anybody. So it's, it's life changing. It affects us all the time, it affects us at all levels. And then it brings in a it does bring our self-esteem down. It brings, we are often we often feel we're not worthy, because when we need help, no one can give us the help. Or if we ask for help, we kind of it's laughed at us. Oh, you don't you know, you don't look autistic. You know, you don't need any help. So social awareness, big thing.”

Emma Nahmiach: Why do you think it isn't being addressed? Or why do you think there isn't being more of an effort to address this seeing as it's not a rarity? I think everybody who's even a little bit versed in the subject knows that and there has been little to no movement whatsoever towards it 

Bruce Petherick: “I think it boils down to representation. it's still tends to only focus on various typically individuals, and the other problem is too many people has met one autistic person and then generalized. And so often we get the we get the, you know, well, you can't be autistic because you're nothing like my sister's child who, who may be nonverbal and completely has cognitive delay problems. And that's not me. But we actually are both autistic, just we're representing different ways. 

So it's the representation. community awareness is still sadly lacking. And we are in as you and I are talking about this. Now, there are two reports in my emails about autistic young autistic adults being arrested by the police and injured because they were seen to be acting suspiciously. And I'm not blaming the police in this because they're reacting to a call that's come in. But again, we've got a community member looking and seeing this person acting strangely and never considering, but it's an autistic person, because it's a regular autistic behavior. 

So that representation that community awareness, then drives into the fact that governments only respond, respond to what their constituents want, and the constituents are not asking the question. Now, we are very lucky that just in the last couple of weeks, we've finally got a national strategy, perhaps being put to the Senate. Actually, I think it was tabled in the Senate, we have a conference coming up in a couple of weeks. So at least at the federal level, there is a little bit of movement. And I have to say it's a it's a small step, but at least it's a step forward. I just wish there would be more autistic voices involved. Because again, it's so often other people speaking on our behalf.”

Emma Nahmiach: As Bruce importantly noted, Representation and awareness is a huge part of the movement for change. I was able to ask all the speakers on how they thought awareness had grown or change in the last 5-10 years, and if had progressed the situation for individuals with autism in the country at all.

Deborah Pugh: “I think it's helped a lot in many ways. But I also think that people still don't know what they don't know. And I think a little bit of knowledge can sometimes be dangerous, because you know, oh, I know about autism. This means they're a genius, or I know about autism. This means that they're, you know, behaviorally challenged. 

So if I look back over 25 years, I think, you know, still pretty early here. I think that the increase in knowledge has been very important increase of awareness. But awareness is one thing and practical supports is another. And part of that is awareness that, you know, someone, an autistic child may have a very sensitive sensory system. But rather than just teaching you that, what are some of the things that you could do to mitigate that sensory sensitivity? Right? Like, let's talk about the practice. 

So I think things have improved significantly in terms of awareness. But I think that when it gets right down to the level of the classroom, or the family home, far too much is in the hands of, you know, do you have a parent who has access to this type of education? Who even knows that their child has autism? Do you have a school where the principal is providing leadership and support for a teacher who has no idea what to do? Because they're not taught in teacher training, that kind of practical in depth information that they require. So I think it is a better situation. But it's, you know, it's an ongoing struggle.”

Estée Klar: “We were the first ones to start the joy of autism blog. When I started out in critical disability studies, people still didn't really know what neurodiversity was. And they didn't claim autism under the rubric of disability, which is interesting. So that would have been in 2008 2012. So yeah, there's been some change in more awareness about neurodiversity. There's been a lot more neurodivergent writers have emerging, which is really great, but also what's happening as in every movement, and this is really important, whether it be feminism or black rights, there is still a diversity of opinion within these groups. 

And I think I first want people to understand what the neurodiversity movement is and what the history is. But I'm going to hope that the neuro gets taken out of diversity, because of its medicalized tethers that then are pathologized, you know, fits into the pathology paradigm. I'm wondering how that's going to shift over time. Everything shifts over time. So whatever that politics may be, what is fundamental is that we look at diversity of human species.”

Adam Wolfond: “I think I give credit to the autistic people wo have helped me gain access to getting an education that knows my way of learning, managed to be the autistic maker of new forms and becoming” 

Bruce Petherick: “I think one of the most important things that's happened recently, has been the number of people on easy, let's say social media, actually, autistic voices being seen and being listened to. And that feeds it even to the real world if I may, outside of social media. That has at least allowed conversations to stop happening. And look, I'm trying I want I'm trying not to blow my own ego in this one. But I'm hired as an autistic advocate by national organization and being autistic. 

Autism, Canada has been criticized before for not having enough actually autistic voices and Autism Canada knows that something knows that's a problem. And we are as an organization, now bringing in more actually autistic voices. And it's like, okay, I am the first step in that in that ladder, that still, I'm so happy to be able to represent an organization that's allowing my voice to be heard, as well as, as well as listening to all the other voices. So you know, it's having actually autistic people. Their voices being heard. Again, we I mean, even again, Autism Canada, we need to have more autistic voices, actually autistic voices on staff. But that's coming.”

Emma Nahmiach: These speakers attest to the reality that the autistic population in Canada is largely left behind, whether in terms of funding and access to services for individuals and their families, or even in terms of relatively simple accommodations of everyday life, as Bruce detailed. Bruce’s own experience is also uniquely valuable as it speaks of even fewer services for autistic adults, considered invisible or undeserving of services. 

Having fought for change within the government of her own province in British Colombia, Deborah aptly demonstrates the frustrations of autistic parents who realise that there is nothing out there for their children. She discusses the prejudices against autistic individuals within the Canadian medical system. They face dauntingly lengthy waiting lists compared to people with physical or more ‘visible’ disabilities. 

Finally, Estee and Adam’s pursuit to opt out of the system and build something new, creative, and collaborative also underscores the failure of our country’s system and shines a light on how ‘therapies’ currently offered aim to not really accommodate, but assimilate autistic people and erase or punish their behaviours. Estee and Adam rethink neurodiversity and the world of segregated disabilities. Despite his being non-verbal, Adam’s accomplishments in his work and his educational contributions to art and neurodiversity speak volumes about the need to understand autistic people on a one-to-one basis. 

As a society, only growth can come from being more open minded to the wealth that difference and neurodiversity can usher. Canada cannot boast a universal healthcare all the while largely leaving behind conditions and individuals that are easiest to ignore.