an introduction to the neurodiversity movement | AutismCRC

This webinar delves further into the neurodiversity movement. Attendees will gain a better understanding of how different brains work in different ways and an appreciation of the value of diversity. It will also provide an overview of the social model for disability and urges systemic change rather than individual intervention.

---

---

AutismCRC Website

Sylvia Rodger | Autism CRC 0:03

Hi, everybody. Welcome to our second webinar for this week being autism week and April being autism month. My name is Sylvia Rodger, and I'm the Director of Research and Education at autism CRC. And I'd like to welcome you all to this webinar. Today, we're going to listen to Jackie Dan housing, and she's going to present to us about the neurodiversity new neurodiversity movement. In order for you to get a better understanding about how different brains work in different ways, and the values of diversity and different ways of thinking. Before we get started, I would just like to go over a few items so you can participate fully in today's webinar. At the moment, you're listening to your computer's speaker system by default. If you prefer to join us over the phone, just select telephone from your audio Hey, and the dialing information will be displayed to you. You will have the opportunity to out this talk to submit text questions via the chat panel. You just need to type them in and we'll collect them and either address them as we go or look at them all towards the end of the presentation. If you have something particularly pertinent to something Jackie has said, please feel very free to ask for it to be addressed straightaway we've got the flexibility to do that. So now to Jackie. Jackie is a registered psychologist with eight years experience in her field of forensic psychology. She is she's also an autism PhD scholar at Griffith University Autism Center of Excellence. She's a very determined and well known autistic advocate. After being identified as autistic at the age of 25. Jackie was introduced to the autistic community through her participation in the inaugural Future Leaders Program that ran concurrently with APEC 2013. She is a current member of the Australia New Zealand autistic advocacy, self network, and all autistic advocacy organization committed to bringing about change in order to improve the lives of horses. She has also performed various roles in the autism CRC, where as I mentioned, she is a PhD scholar. And she has a very important role on the biobank access committee. So before I hand over, just a reminder to make sure you keep tracking for any questions, because we're very keen to be able to answer those before the end of the presentation. So thank you, Jackie, and over to you.

Jacky den Houting PhD 3:09

Thank you very much Silvia. All right. So can we see my slides? Okay, so good afternoon, everybody. And as you've just heard, I wear a lot of different hats in my wife, and I play a lot of different roles. Today, I'm going to be presenting to you in a role that's a particularly important one for me, because today, I'm talking to you as an autistic person autistic with a capital A, and I'm going to be introducing you to the neurodiversity movement in the way that we as autistic people want you to understand it. So today, I'm not giving a talk about research findings. I don't have a methodology or results section or anything like that. Some of what I'm going to be talking about is a bit controversial. And you might not like everything that I say you might not agree with everything that I say. But I want you to do your best to listen with an open mind. Because at the end of the day, what I'm talking about is community and culture and people, my people and the people that all of you are here to help. The webinar today has two main parts. Firstly, I'm going to give you a quick explanation of what the neurodiversity movement actually is. And then secondly, I'm going to expand on some concepts that are really important within the neurodiversity movement, and within autistic culture more generally. And I'm going to do that by teaching you 10 things that you You should never say to an autistic person. So let's start at the beginning. What exactly is the neurodiversity movement? In order to understand in your diversity movement, we need to understand a couple of key terms. The first one of those terms is neurotypical. And we've all heard the narrative, the word neurotypical before, and we all have a bit of an idea of what it means. But what it means in the autistic community might be slightly different. The term neurotypical refers to having a style of brain functioning that falls within society standards for normal functioning. neurotypical is the opposite of neurodivergent, which refers to having a brain that functions in ways that are different or diverged from society's standards to normal functioning. Autism is one type of neuro divergence, but there are heaps of other types of neuro divergence, everything from ADHD to dyslexia, and even conditions like schizophrenia, they can all be considered types of neuro divergence. The next term that we need to understand is neuro diversity. And again, I'm sure we've all heard the term before, but we might not know exactly what it means. What I can tell you is that neuro diversity is actually a fact. Diversity exists in human neurobiology. different brands work in different ways. And when we say the word neuro diversity, that's all we're referring to. It's just the fact that different brands work in different ways. What most of us think of though, when we hear the word neuro diversity is actually the neurodiversity paradigm. The neurodiversity paradigm is a set of beliefs about neurodiversity, and specifically the belief that neuro diversity is valuable, that there's no right or wrong form of neurology, essentially, that any brain is a good brain. The next step on from the neurodiversity paradigm, is the neurodiversity movement. And the neurodiversity movement puts the beliefs of the neurodiversity paradigm into action in the form of a social justice movement, the cause for respect, equity, and inclusion for neurodivergent people. The neurodiversity movement is not specifically about autism. But within the broader neurodiversity movement, there is a specific autism rights movement.

Unknown Speaker 7:53

The core principles of the autism rights movement look a bit like this. First and foremost, autism rights advocates believe that differences in neurological development should be accepted, respected, and valued. And that's the one key principle that underlies all the work of the broader neurodiversity movement as well. Secondly, autism rights advocates believe that autism is a difference, but not necessarily a deficit. And there's a common analogy that we've probably all heard to explain this one, which is that non autistic people run on a Windows operating system. And autistic people run on a Mac operating system. They're different, but they're both equally valid ways of operating. Third, autism rights advocates believe that autism is an intrinsic aspect of our identity. If you somehow change or remove somebody as autism, then you change who they are as a person, in much the same way as if you somehow changed their race or their gender identity. And this concept is summed up really nicely in a quote from the autistic advocate Jim Sinclair. Autism isn't something a person has, or a shell that a person is trapped inside. There's no normal child hidden behind the autism. Autism is a way of being it is pervasive. It calls every experience every sensation, perception, thought, emotion, and encounter every aspect of existence. It is not possible to separate the autism from the person. And if it weren't possible, the person you'd have lived would not fit the same person you started with. I also want to touch really briefly on the idea of the autism discourse. Now when I say the autism discourse, what I'm referring to specifically is The language that we use to talk about autism. The language that we use is vitally important, because it's inherently linked to the way that we think about autism. So if you've read any article in the popular media about autism in the last few years, chances are you've come across this image before. This picture of the poor little boy trapped behind the glass wall epitomizes the way that autism is usually portrayed. We talk about autism using terms like disorder, and suffer and risk. we characterize autism as a kidnapper that's stealing children or a puzzle to be solved a battle to be fought and an epidemic that's sweeping around the world. In order to change the way that we think about what ism we have to start by changing the way that we talk about autism. So I'm going to give you a bit of guidance to help you in changing the way that you talk. And the way that you think about autism by teaching you my personal favorite 10 things that you should never say to an autistic person. Number one, don't say autistic, you're a person with autism. What we have here is the concept of identity first language or I am an autistic person versus the concept of person first language, or I am a person with autism. Now, most of us at this webinar, including me, would have been taught to use person first language. And the reason for that is that person first language is supposed to emphasize someone's personhood. It's about sending the message that even though you have autism, you're still first and foremost, the person. And autism doesn't define you. That's a nice sentiment, but it's not entirely true. You say autism does define me, as Jim Sinclair

Unknown Speaker 12:14

said,

Unknown Speaker 12:15

an autistic person's every experience is colored by our autism. The phrase person with autism indicates that the person has value Yes, but it implies that the value exists only in isolation from the person's autism. By extension, this implies that autism is an inherently bad or a negative trait. And to quote Jim Sinclair, again, that autism is so bad, it isn't even consistent with being a person. Because many autistic people see our autism as a key aspect of our identity, and not something that's an inherently bad thing to be. Most of us prefer to use identity first language, and we refer to ourselves as autistic people. Now, I said at the beginning that this is not a talk on research findings. But that's not entirely true, because I want to quickly share the findings from just one study with you. In their 2016 study, Kenny, and colleagues survey participants about their preferred language when talking about autism, and they found that 61% of autistic adults preferred the term autistic, and are like 28% of autistic adults preferred person with autism. In contrast, they found that 38% of professionals prefer the term autistic. And 49% of professionals prefer the phrase person with autism. So you can see that not only do most autistic adults prefer identity first language, but there's also a bit of a discrepancy there between the preferences of autistic people, and the preferences of the professionals who work with us. The key thing to remember when it comes to language preferences, is to always respect the individual's choice of language. I refer to myself as an autistic person. And so that's how I expect you to refer to me as well. But if you choose to call yourself a person with autism, then that's what I'm going to call you to. Number two, you must be very high functioning. In the autistic community, we call the terms high functioning and low functioning, functioning labels. And as a general rule, we don't really like being referred to In terms of our functioning, and there's a few reasons for that. Firstly, of course, high functioning and low functioning autism are not actually diagnostic categories. As much as we use the term high functioning, autism is not a never has been an official diagnosis. And because of that there aren't any objective criteria for what differentiates high functioning from low functioning, it's purely a subjective thing. Historically, we've used attributes like IQ, or being able to speak using your mouth to determine someone's level of functioning, but even attributes like that are problematic. Secondly, functioning is not a static thing. For most autistic people, at the level of functioning changes sometimes vary dramatically from day to day, or even from minute to minute, depending on our environment, and a whole range of other factors.

Unknown Speaker 16:08

Just because someone can speak fluently today, it doesn't necessarily mean that that is going to be the case tomorrow. Also, functioning varies across different skill areas. Being impaired in one skill area doesn't automatically mean that we're impaired across all skill areas. For example, there are plenty of autistic people out there who can't speak, but who are very highly intelligent, are those people low functioning or high functioning. Lastly, and perhaps most importantly, from a practical sense, saying that somebody has high functioning often means that their difficulties are ignored. And saying that somebody is low functioning often means that their abilities are overlooked. Number three, autism isn't a disability, it's just a difference. Most autistic advocates would agree with you that autism is a difference. Yes. But most of us also believe that autism is definitely a disability, just not in the sense that you might be familiar with neurodiversity advocates believe that autism is a disability in the sense that's described by the social model of disability. Now to explain this concept, I need to introduce you to the different models of disability. In order to understand the different models of disability, the first thing that you need to know is that the concept of impairment is important when you're talking about disabilities. And the second thing you need to know is that impairment and disability are not the same thing, but often go hand in hand, but they actually refer to very different concepts. So onto the models. The model of disability, which most of us are familiar with, without even necessarily being aware that we're familiar with it is called the medical model of disability. This model defines impairment as the physical, mental or emotional characteristics of a condition, such as the losses or abnormalities in function or instruction. So in the context of autism, we could say that the impairment is the difference in the way that our brains function. The medical model defines disability as a lack of ability resulting from an impairment to perform an activity in the normal map. So what that saying is because of your impairment, you can't do something because my brain works differently. I can't go to the supermarket and get my groceries. The medical model places disability within the individual, the problem is with the disabled person. The other model of disability is the social model. The social model of disability defines impairment in exactly the same way, as the medical model is the physical, mental or emotional characteristics of a condition. The difference between the two models becomes apparent when we look at the social models definition of disability. In this model, we talk about the limitations, restrictions and disadvantages experienced by people who have impairments as a result of this social environment. So rather than saying when an individual is disabled because of their impairments, the social model says that an individual is disabled because of a poor fit between the characteristics of the individual and the characteristics of the environment that they live in. According to the social model, the reason that I can't go to the supermarket and get my groceries is not because my brain works differently. It's because of the supermarket isn't designed to accommodate the way that my brain works. Unlike the medical model, the social model places disability within society. The problem is not with the disabled person, it's with their environment.

Unknown Speaker 20:43

Understanding the social model can take a pretty substantial paradigm shift. For most people, it requires you to change the whole way that you think about disability, the way that society teaches us to think about disability. So let's try and shift those paradigms a bit. I want you to imagine for me, a town that is completely run and populated by a wheelchair users. When I designed the town, of course, they designed it to suit wheelchair users. So all the doors and all the ceilings are out wheelchair. And the restaurants they have plenty of tables, but they don't have any chairs. Then one day, you come to town walking around on your legs. But every time you try to get into a building, you bump your head on the doorframe and you end up with bruises all over for the wheelchair users give you some handy suggestions for fitting into their town, you could wear a helmet to protect your head, or you could see an OT to help you learn how to bend down to normal wheelchair high all the time. Some of the wheelchair users even suggest that you should maybe just stop using your legs altogether and just pretend you need a wheelchair like everybody else. But deep down, you know that there's nothing wrong with being able to walk. Sometimes it's even a bit of an advantage for you like when you go to the beach, and you're the only one who can get across the sand to get into the ocean. And so you realize that it's not actually you, that's the problem. It's the town that's the problem because it's not designed for you.

Unknown Speaker 22:35

Number four,

Unknown Speaker 22:37

everyone's a little bit autistic. Now, this one seems to stem from the idea that the autism spectrum looks a little bit like this, a nice linear spectrum, with 100% autistic at one end, and 0% autistic at the other end, and the different levels of autism at different places along the spectrum. But the autism spectrum doesn't actually work like that at all. You say the spectrum isn't about measuring someone's level of autistic ness, because autism isn't one singular tried. Autism is a collection of unique abilities and impairments, which different autistic people experience in different combinations and to different degrees. A more accurate way of depicting it, which is a spectrum looks something a little bit like this, where each of the color sliders on the left represents a specific trait. And each artistic person experiences each one of those traits to a different degree. All of those traits then combine to place the person somewhere on the round spectrum of different autism colors on the right there. Although autistic people all experience each trait differently, in order to actually be on the autism spectrum, you do need to experience each one of those traits to at least some degree. If you only have one out, then you're not a little bit autistic, you just have a couple of traits that autistic people also have. Now, people often say we're all a little bit autistic, to try and normal as they expect experiences of an autistic person and to make us feel a bit better about our difficulties. The problem with that is that when you're on our end, it actually feels a bit like you're trying to dismiss our difficulties, saying that we're all a little bit autistic. It minimizes the very real challenges that autistic people face living in a world that isn't designed for us. Similar to saying to a person with depression, that we all have a bad day here and there. Yes, it might be true. But having an occasional bad day doesn't even begin to compare with the experience of having clinical depression. Number five, but you think so normal. This one is not often said to people who are very visibly autistic. But those of us who have more invisible disability, we hear this all the time, is usually intended as a compliment. But actually, it can be frustrating and even a little bit insulting. It suggests that if you don't appear obviously autistic, or you don't meet somebody preconceived notions of what autism looks like, then you must not be autistic. It also it suggests that normal is the epitome of being human, that it's somehow better to be normal than it is to be autistic, and that we should all aspire to appear as normal as possible, and to hide the parts of us that make us seem more autistic. And that idea, of course, is at odds with the neurodiversity paradigm, which says that all forms of Neurology are equally valuable, and equally that number six, it doesn't matter that you're autistic, I will treat everyone equally. There are lots of alternative versions of this one. I don't care that you're black, I'm colorblind, go straight Love is love. I see the person, not the wheelchair. Now, again, these are usually well intentioned statements. But the thing is, when you tell someone that their race or their sexuality or their disability doesn't matter to you, you're not solving racism or homophobia, or ableism. You're just ignoring it.

Unknown Speaker 27:19

The reality is that we live in a world of social power in equality. minority groups have less power, and a more disadvantaged than majority groups, because the world is designed to accommodate the needs of the majority groups. And these inequalities, they mean that life is more difficult for people in minority groups. Now that difficulty can manifest in countless different ways. It can be a gay person, wondering if it's safe to hold their partner's hand in public or a wheelchair user having trouble finding an accessible bathroom, or a person of color being shocked by a police officer just because of the color of their skin. When you say to someone in a minority group that you don't care about the minority status, or essentially implying is that you don't care or you don't understand how much more difficult life can be for that individual as a result of their minority status.

Unknown Speaker 28:27

You say when you say you think everyone should be treated equally, that implies that everyone needs the same things to be able to live successfully. But of course, that's not necessarily the case. A better option is equity, where everyone is given the right support and the right accommodations to meet their individual needs. But the best option or is liberation, where the systemic barriers are removed, and the world is designed in a way so that everyone's needs are met with that any made for supports or accommodations. Another concept that is relevant here is Spoon Theory. Spoon period was originally developed by Christine misora and DNR, and it's a metaphor that we use to explain a little bit about what life is like for people with disabilities and chronic illnesses. In this theory, spoons are a measure of energy and everyday you have only a limited number of spoons to complete everything that you need to get done that day. I want to take a minute and think about your usual daily routine in terms of spoons. How many Sprint's would it take you to do the things that you usually do in a day What would you have to give up?

Unknown Speaker 30:09

What would you have to give up

Unknown Speaker 30:11

in order to get through your

Unknown Speaker 30:13

day with only 12 spirits.

Unknown Speaker 30:19

So let's say you wake up in the morning, and you get out of bed and you get dressed, you're already down to spirits. You skip breakfast to save some swings, and you have any car and you drive to work. That's another Spirit God. You spend the day at work. And while you're there, you make an eat lunch because you're stalling because we skipped breakfast. There's another six Sprint's gone so now you've used up nine, Sprint's already. Now you can't spend the night at work, so you drive home, and that's 10 screens gone. Now you're down to just two seconds, and you have to choose between taking a shower, taking your medication, or having dinner, you can try to push yourself past your daily spoon ration in order to get something extra done. But then you run the risk of meltdown for neurotypical, non disabled people, this this generally is not a part of your reality. You start your day in the morning, and you do what you need to do, and then you go to bed at night. But for autistic people, and for people with a range of other disabilities every day is a balancing act. And this is part of the reason why we need equity and liberation, rather than just equality. Because sometimes having the right supports, that can mean that a task might only use up two of my sprints instead of four. And that might mean that I get to eat dinner tonight.

Unknown Speaker 32:06

Number seven. Have you tried gluten free, casein free or camel milk? Or how about oxygen therapy or ABA or collation of floortime or brushing or megavitamin interventions? We all know that there are literally hundreds of these different autism therapies out there. And some of them are fine. But a lot of them are not consistent with what we believe about autism as neurodiversity advocates. Let me give you some examples of the don'ts and the do's of autism therapies. According to the neurodiversity power. treatments in the dark list include things like these, firstly, any form of aversive therapy, which includes things like electric shock as punishment for bad behavior, and I think we can all see why that's not okay. Secondly, compliance therapies. These therapies are essentially aimed at training autistic people to give particular responses in particular situations. Compliance therapies can be unhelpful for a number of reasons. For example, they often use methods and have treatment goals that are quite distressing for autistic people. Things like preventing stimming or forcing us to make eye contact. They also tend to take away the autistic person's autonomy. They teach us that providing the correct response is more important than expressing our true wants and needs. That is really unhelpful and even can be dangerous for us because being overly compliant leaves us vulnerable to manipulation and to abuse. Next normalization therapists, these therapies teach autistic people to try and appear less autistic. These types of therapies can be unhelpful, because they teach autistic people that our preferred ways of acting, and of interacting are somehow flawed and that we're in need of fixing. normalization therapists can contribute to poor self esteem and even to mental illness. by teaching us the we're not good enough

Unknown Speaker 34:39

as we are.

Unknown Speaker 34:41

And lastly, cure with therapies, things like collation and miracle mineral solution. Now, Aside from the obvious fact that autism can't be cured, and autism doesn't need to be cured, these types of therapies are downright abusive. They can be serious physical injury and they've even been known

Unknown Speaker 35:03

to cause death.

Unknown Speaker 35:05

The overarching problem with all of these types of therapies in the don't list, it comes down to the fact that they're not designed to improve our lives as autistic people. They're designed to improve the lives of the people around us by making us a bit easier to cope with. In contrast, the treatments and the supports in the do list include things like this, there is to support communication and the use of assistive technology allowing autistic people to communicate in the ways that work for us. appropriate accommodations to support inclusion and success in education and employment. Because we absolutely can be successful in those areas. Even support needs have met appropriate treatments for co morbid physical and mental health conditions. We know that autistic people have really high rates of mental illness, and we're also more likely than non autistic people to experience a whole range of different physical health conditions. Unfortunately, though, those conditions are all too often just dismissed as being a part of autism, when the reality is that they're actually comorbid conditions and appropriate treatment for those conditions could significantly improve our quality of life. To sum up, the types of therapies that we do support include any therapy that is going to be beneficial for the autistic person in some way. therapies that will help us to live happy and fulfilled autistic lives, rather than mediocre imitations of neurotypical lives. Number eight, you can't be autistic, you're not like my child. Well, of course, I'm not like your autistic child. Your autistic child is an eight year old boy, and I'm in my third with a job and I'm no more similar to your autistic child or to them, you are up to my 12 year old neurotypical mix. But the fact that you're nothing like one neurotypical child that I know, doesn't mean that you will not hear a typical phrases like this one, you will not like my child, they're often used to silence autistic people in the conversations around autism. And they often found as part of a bit of a rant, which goes sort of like, my child can't talk or feed themselves or go to the toilet or line. They self harm, and they have meltdowns every day. How dare you claim to speak for my child? Here's the thing. I don't claim to speak for that child.

Unknown Speaker 38:13

The only person that I can speak for is me. What I do claim to do though, is to speak with that child. Nor I don't understand what it's like to have meltdowns every day. But I do understand what it's like to have meltdowns. No, I don't understand what it's like to self harm every day. But I do understand what it's like to self harm. No, I don't understand what it's like to be unable to speak every day. But I do understand what it's like to lose speech for a few hours at a time. Of course, my experience of autism is never going to be exactly the same as that child's experience of autism. But my experience of autism is much closer to that child's experience than any non autistic person's experience will ever be. autistic people grow and develop over the lifespan just like everyone else. I may not be like that autistic child now. But I was when I was a child. And when that child grows up, chances are they're going to become someone who's a little bit like me. The logic behind this statement, you're not like my child, is that if you don't look like someone's own personal experience or understanding of autism, if you're capable of doing things that others can't, or even if people perceive you as being capable of doing those things, then you're not autistic enough to speak on behalf of the autistic community. The problem with that is by that definition, The only people who are autistic enough to speak for the autistic community are the people who are not able to speak for the community.

Unknown Speaker 40:14

Number nine,

Unknown Speaker 40:15

can you have sex, you would be so surprised at how often autistic people get asked this particular question and a whole range of other similarly personal and inappropriate questions. This is an example of what we call the self narrating Zoo exhibit, which is asking someone to share personal information about themselves only for the purpose of educating you and without any reciprocal sharing on your part. Now, on the one hand, it's great that you're asking us questions. And absolutely, you should be learning as much as you can from the autistic adults around you. On the other hand, it's important to remember that we're still people. We're not walking talking autism textbooks are pretty simple rule of thumb with this one is if you would be uncomfortable if I asked you that question, then you should probably think twice before you ask me that question. Number 10. You're such an inspiration. This one is my personal favor. Now. Don't get me wrong. I'm not saying that you should never tell an autistic person that they're inspirational. If I had done something that is truly and genuinely inspirational, then by all means, tell me Sorry. But the problem is all too often disabled people are used as objects of inspiration. Simply it's a living albox it happens so often that we even have a term for it. It's called inspiration porn. We use that phrase to refer to content which objectifies disabled people, in order to make other people feel

Unknown Speaker 42:11

good.

Unknown Speaker 42:14

Often inspiration porn is something like this. An image of a disabled person doing something perfectly mundane like this lady just sitting in a wheelchair with a quote black, the only disability in life is a bad attitude. Sometimes the inspiration porn is a heartwarming story about a disabled person overcoming their disability, in order to achieve something fairly ordinary. You might remember for example, the story of Sam the artistic dancing barista from a year or two ago. And now that version of inspiration point is the Abel hero inspiration porn. And probably the most well known variation of this one is the story of the beautiful popular American cheerleader who asked the disabled kid to go to the school prom with her. And then she goes viral on the internet for being such a wonderful

Unknown Speaker 43:14

person.

Unknown Speaker 43:17

Here's the thing about inspiration porn, it exists for you guys, not for us. It's there so that you can look at it and you can feel good. And think to yourself, I don't have it so bad, I could be that person. But what happens when you are that person? Imagine how it feels to be disabled. Getting this constant messaging that to live a disabled life must be to live a terrible life. And that just living while disabled makes you brave and courageous and inspirational. What this does for disabled people, is it sets the bar of expectation incredibly large. If I'm inspiring just for getting out of bed in the morning, then how on earth can I expect to get a job or get married or have kids? I chose this picture for this slide very deliberately. Because the lady in this picture is the light Stella young, who was arguably Australia's best disability advocate. And stubble would probably be turning over in her grave right

Unknown Speaker 44:34

now,

Unknown Speaker 44:35

if she knew that I'd used her image with this quote, the only disability in life is a bad attitude. And the reason for that is to quote Stella, this price is bullshit. As we already know, from learning about the social model of disability, most of the challenges in life for disabled people come

Unknown Speaker 44:57

from our environments.

Unknown Speaker 44:58

Not from ourselves, no amount of smiling at a flight of stairs has ever made it turn into a ramp. I started by telling you that this talk would be about community, and culture, and people. And I want to end now, by reminding you of that. Autism isn't just a diagnosis. It's a dynamic and an evolving community with a strong culture. And as researchers and as professionals, that should mean something to us. When we do work or research with indigenous communities, or LGBTI, communities or any other minority group, we do it in a way that is considered and respectful of the culture of that group. Will the autistic community has a culture as an autistic person, nothing that has been more beneficial in my life than finding my autistic tribe. No amount of research of therapy or intervention could compare to finding a community that accepts and understands me just the way that I am. So for you, as researchers, professionals, and family and friends of autistic people, come and find our tribe, listen to us, learn from us, work with us. And most importantly, respect us just as we are.

Unknown Speaker 47:32

Okay, we're just adjusting the cameras in the room here. And Jeremy, thank you very much for that. Talk. As you know, I've heard it a number of times, and I really do take something different from it every time I hear it. There are likely to be people listening to this talk for the first time. And we're interested to to know if you've got any particular questions to Jackie. It's one of the clearest explanations of neuro diversity that I have I have ever heard. Jackie, I just wondered if I'm gonna pick up something we discussed yesterday, and some of the audience may have been, but I'm one of your comments about compliance therapy was the impact it has on making autistic people feel that they have to comply. And I wonder whether you can just talk a little bit about how that can impact on people, particularly girls and women being in a situation of inability to say no, and having trouble with abuse and harassment and so forth. Yeah.

Unknown Speaker 48:52

Yeah.

Unknown Speaker 48:54

Yeah, look, it's it's one of the big concerns around those compliance type therapists, there are lots of concerns with but first, those types of therapies. They, they teach people that when they're asked to do something, or when they're told to do something, there is no other options. And it's usually with discrete trial training, it's very much about people do this over and over and over again until you do what you are told to do. And when is taught that as a child or as a young adult, and then they find themselves in a situation as an adult, where somebody is telling them to do something. All of their instincts and all of their desire to not comply is overwritten by the worst behavior of compliance and it can particularly to girls and women, to any good to, to that person, anything else. In a situation that, that I would rather not be. And we know, unfortunately, artistic girls and women have extremely high rates of victimization in terms of physical violence, sexual violence, emotional violence, domestic violence, relationships, and all those sorts of things. And it's really not something that we should be teaching autistic people to be compliant.

Unknown Speaker 50:32

Thanks, Jackie, had a question come he come in, had another one had a newly diagnosed people find their tribe? Should they be given points of contact? And what sort of context would there be?

Unknown Speaker 50:52

I absolutely believe that that is what should be the response to somebody being identified as autistic, it shouldn't be. These are the therapies that you need to be less autistic or anything like that it should be welcomed. That should be the immediate follow up to a diagnosis of autism. In terms of where to find us, one word after the internet. We the autistic community is huge on the internet. This if you've read neuro tribe's by Steve Silberman, you'll you'll see that there's an entire section dedicated to the value of the internet for artistic community. On the resources slide that I had, at the end of my talk, there are a number of great blogs and great websites that people can use as a starting point. And the autistic community is very much interconnected. So all you need is to find two or three good places. And you will be able to follow the paths through the community to find the place where you fit in. And to give you a couple of suggestions. A really great one is the autistic Women's Network for for women and people who don't identify as men. There's also places like the Autistic Self Advocacy Network, which I'm on the committee of the places why the thinking person's got autism as well. And Facebook groups this there's hundreds and hundreds of Facebook groups on Twitter as well. If you follow the hashtag, actually autistic, you'll find heaps of autistic people there as well. So yeah, definitely the internet.

Unknown Speaker 52:45

Right. I think that's really good advice. Just got a question here about you mentioned, it's important that people on the spectrum can live autistic lives, and not have to mimic a normal life or whatever, neuro typical life. And a question comes up often around stimming, and children and stimming. And parents frequently want to reduce the stimming so that they look more normal, and they don't stand out quite as much. I wonder if you've got any comments about that. Being autistic versus trying to be normal?

Unknown Speaker 53:27

Yeah. stimming is, is one that as you said, it often does come up, I would strongly, strongly suggest that unless the stimming is in some way harmful to that person or to someone else that you let at bay. You know, I've done a whole talk with with a political in my head, because stimming serves a purpose and wouldn't the purpose so, you know, if somebody is, is stimming in a way that is somehow harmful, then look at exactly what they're doing and see if you can find non harmful ways that they can press that same stem. But don't don't stop it just to make them look like everybody else because it serves a purpose and stopping at just plays to stress and distress.

Unknown Speaker 54:26

Thanks, Jackie. Another questions does come in. I am an autistic parents with two autistic children who want social skills training. We feel we feel we should support them, to and in especially to make friends. Can you clarify your comments about social skills training from your do's and don'ts list?

Unknown Speaker 54:52

Yes, absolutely. So when it comes to social skills training, absolutely. I'm going to show that it can be helpful to have the social skills that are expected by a neurotypical society. You know, for things like making friends with autistic people for getting a job down the track, all of that sort of thing, it can be useful to have those skills. What I believe, though, is that those skills need to be presented as one of a number of valid alternatives.

Unknown Speaker 55:27

All too often social skills are taught in the artistic way of doing things is the wrong way. And in your typical way of doing things the right way. What we need to be

Unknown Speaker 55:41

your autistic way is perfectly fine. It's perfectly valid, that's who you are, and don't lose that. But if you are in a situation where it might be beneficial for you to communicate with neurotypical people in their own language, this is how they do it. So almost like learning another language if you if you wanted to work. Chinese, you're not going to refuse to speak English so that you can learn that language, you're just going to see it as a valid way of communicating very, very important to reinforce that the artistic play is perfectly fine. And that the non artistic way is just one alternative option.

Unknown Speaker 56:26

Thanks, Jackie. This questions coming? How can non autistic parents learn to understand standard that artistic child better?

Unknown Speaker 56:40

refers to you

Unknown Speaker 56:43

know, artistic understanding a friend who's autistic better, but sort of what tips or strategies do you have about helping somebody to do that? Yeah,

Unknown Speaker 56:54

the first step is being today, listen to autistic people, particularly autistic adults, because we've got the lifetime of experience with us. But listen to the autistic people in your life, we know what it's like to be autistic better than anybody else. Better than the research sorry, research is nothing like living it for to be able to understand. So getting contacted contact with the autistic people in your community. get in contact with autistic people online. And don't forget that your child is capable of advocating for themselves all too often I hear people saying, I have to advocate for my child. No, you have to advocate with your child, your child helpless. And they need to be able to develop those skills for their lifetime. So talk to your child, ask them and encourage them in expressing their own wants and needs and experiences as

Unknown Speaker 58:01

well. Thank you very much for that, Jackie. There are a lot of comment comments coming in on our chat pane. But the overarching one is, please tell Jackie, this has been one of the most invaluable. Thank you. So I'm probably going to wind up now by adding our thanks, Jackie, for yet another brilliant presentation, yet another brilliant set of answers to questions that are coming in in an unconscious way. And I really just want to join with the people who are online, who are just saying this has been an invaluable presentation. It continues to be and we continue to look forward to working with you through the rest of your PhD and hopefully well beyond that. So thanks, Jackie, for sharing your insights and your lived experience. And we look forward to catching up again soon. So for people online, we have a third seminar webinar tomorrow. And we'll look forward to those to maybe get with those of you who are joining us tomorrow more information on our website, autism crc.com.au. About the rest of the webinars this week. So thank you for joining us and thank you Jackie, for your presentation.

Transcribed by https://otter.ai