Jenna Gensic, author of "What Your Child on the Spectrum Really Needs: Advice from 12 Autistic Adults" presents a primer to understanding the Neurodiversity paradigm as it relates to autism.
Unknown Speaker 0:09
All right, you are good to start very clear. Okay. Hi everybody. I'm Mary Claire specular with the Bartholomew County Public Library, and also with us as Tessa hybrids from our digital underground who's handling the technical aspects of our event. And welcome to neurodiversity. 101. Our presenter, presenter Jenna Jensen is a freelance writer, disability advocate and mother of four from Northern Indiana. She has a BA in English and an MA in English writing. Jenna taught high school English before making the decision to work from home and raise your young children. She is the author of what your child on the spectrum really needs advice from 12 autistic adults, which we have that book on our collection, and she also manages the Learn from autistics website and writes and speaks about parenting issues related to prematurity, cerebral palsy and autism. Jenna is currently co authoring a book on autism advocacy advice from the hashtag, actually autistic community. And now over to you, Jenna, and thanks, everybody for being on the call.
Unknown Speaker 1:14
Well, hello, thank you so much for that introduction. And thank you guys for your interest in this topic, which I I believe is really important. I, if you're comfortable, I'm curious about knowing a little bit more about my audience, if you're comfortable putting in the chatbox just who you are like a teacher, a parent autistic parent, neurotypical parent, a therapist, if you're comfortable with that, go and put that in the chat box. And I'll give you a little more background on me to give you some context to my work. And what we're going to talk about today. I'm a neurotypical mother of four, my oldest is diagnosed with autism and cerebral palsy. And I also have a younger brother on the autism spectrum. So I started engaging directly with the autistic community about eight years ago to better obtain advice for how to help my autistic son. And I right now, as Mary Claire mentioned, I'm working with an autistic co autistic author on another book, Dr. Jennifer, Elizabeth Breton, and we're working on a book on advocacy and ally ship. And that's kind of what I'm doing, what my work is moving forward, I'm partnering with people on the spectrum to write and share their voices. So I'm really grateful to have met a lot of different autistic adults this way, and I've made some friendships, and I've benefited from their advice. And I know my son has, so I try to share what I've learned and encourage other people to engage with the autistic community to get the same insights that I have. So I am going to share my screen real quick. And we'll get started. And
Unknown Speaker 3:04
Unknown Speaker 3:08
All right. Can everybody can we see the screen? Yes, yes. Okay, perfect. Okay, so when my, when my son first started therapy, maybe when he was four years old, his therapists would encourage him to make eye contact, he didn't look people in the eye that often. And part of their training to teach him to use eye contact was to either ignore him, unless he looked right up in their eyes, or to prompt him like, Hey, I'm up here, hey, I'm up here when he was trying to say something. And that was what my husband and I were taught to do as well to train him to use eye contact. And I stumbled across some articles about artists are from autistic people who were talking about eye contact, specifically, and how painful it was and how difficult it was, and asking people to stop encouraging them to use eye contact. And so this really struck me because I was in the beginning of my journey with trying to figure out what was best for my son. And this struck me as interesting because it was directly contradicting what the experts at the time that I've been seeking out it told me. So I read an article were written by someone on the spectrum who said, If you insist that I make eye contact with you, during our discussion, when I'm finished, I won't be able to tell you anything about what you said. But I'll be able to tell you exactly how many millimeters your pupils change when I looked into your eyes. And that was really profound to me. And I ended up researching it a little bit more and learned about how the autistic brain actually functions differently. When it's making eye contact like it they get different amounts of input than a neurotypical person does. And so it's actually distracting. And I thought this was exactly like what My son was going through and I thought, wow, if I was this wrong with this particular thing that we're trying to work on with him, what else am I wrong about. And so I am on a continual journey to learn more about autism acceptance and disability, and ableism, which is the discrimination against people with disabilities. So I'm just constantly I've made a lot of mistakes in this space. And I'm just constantly trying to improve. And so I share what I've learned. I am not an expert on autism, I think that people on the spectrum are the real experts. And that's who we should be looking for, for answers. But I, I've just tried to keep doing a better job than what I had before. So this presentation is going to compile some of the most popular advice that I've been offered from the autistic community regarding neuro diversity, autism acceptance. And this will ultimately results in more confident, capable autistic children and adults.
Unknown Speaker 6:04
So the presentation is really geared towards parents, relatives, anyone who's working with individuals on the spectrum. Some people might believe that the principles of neurodiversity that I'm going to talk about in this presentation are better suited for families with children who are verbal, who are diagnosed with Asperger's, or what was formerly known as Asperger's syndrome. Or what people might describe as high functioning classic autism, which is approximately that group encompasses approximately 70% of the autism spectrum. However, I it's very true that different people present in different ways. But I'm just going to ask that you kind of keep an open mind, because there's a lot of this that is really that can be beneficial to anybody. And while I'm not here to say that there's one particular way that's going to be best for everybody on the spectrum, I think it's can still be pretty informative to hear what people are saying and take what you can from that, so.
Unknown Speaker 7:09
Unknown Speaker 7:12
All right. So neuro diversity is a concept that encourages the acceptance of a variety of different neurological conditions. And what this means for autism specifically is that autism is considered a natural neurological variation rather than a defect or a flaw. So, because of this, many neuro diversity advocates assert that autism should be embraced and accepted and celebrated, for the same reasons that diversity is celebrated in a lot of other aspects of life. So, but unfortunately, the more common practice over the years is for autism to be hidden, fixed, cured, eliminated. Some autistic advocates say that autism is pervasive and affects every perception of the world someone has. And I've talked to I interview people regularly for my website, I've, I have like over 170 interviews with adults on the spectrum. So a lot of this advice is coming from the majority of the people that I've spoken to. A lot of people say that it's intimately tied to their identity. And if you say you're trying to eliminate autism, you're trying to erase who they are. And not everybody identifies this way. Some people have said, I, like autism is not who I am, but it's a part of me. I've heard people say that as well. So the point is really like we should be. If you want to follow the principles of neuro diversity, you should just be allowing others to identify how they want. I as a neurotypical shouldn't be telling somebody else how they should identify. So I wanted to first address though before I get into this too much, some of the resistance movement to neuro diversity, some of the opposition's to it the largest voices against embracing this paradigm have been largely like neurotypical parents or doctors and therapists, but there are some autistic self advocates in the mix, as well. But I just want to address some of these first. So some people have said that neuro diversity advocates are only the highly verbal autistic people or those with mild symptoms. And while I've spoken with many, many people who are do have the ability to speak, and advocate for neurodiversity, there are still non speaking advocates as well. And I actually have a slide later if you're interested in just hearing from that perspective. But even non speaking autistic people with really high support needs, even those people can still have Speaking autistics advocate for them. So a lot of autistic advocates will become very upset when parents say something like, you're not like my child, you don't speak for my child, you can talk, they can talk, you can advocate for yourself, they can't. And they, they get upset because it's kind of like squashing their expertise. Because they still have some insights that could be valuable. And the, after all, that's what, that's what neurotypical parents do. They they are, they do not present exactly like their autistic children, but they're still trying their best to advocate for them. So I'm autistic, I was kind of just saying, like, give us a chance, like we have we have things that are are beneficial. Listen to us, please don't dismiss us, because we don't look exactly like your child. Okay. So some people have said that neurodiversity advocates oppose therapy, because therapy can be associated with fixing or getting rid of autism. And I'm going to talk about a distinction here, it's really common for neuro diversity advocates to oppose very specific kinds of therapy, that aim to one would be an example would be if you're trying to get rid of a harmless autistic trait. So something that's not harming anybody, but we just want to get rid of it because it looks different. Or if it's forced on somebody when they haven't opted into it. Now, I understand when you if you're talking about young kids, they, they don't know what's best for them at a certain point. So there's, there's some line right, you've got to do your best to figure out what's best for your kids, or your clients. But at some point, you can they can have some buy into what they're doing. So ABA is one example that it's a commonly condemned therapy within the autistic community, or I should say, some ways that it's implemented, I'm not going to say all things that are called ABA because ABA can look very different based on how it's implemented.
Unknown Speaker 12:08
So sometimes things are called ABA that aren't, but that's one that's been commonly condemned. But neuro diversity advocates really welcome Well, all sorts of therapy that helps them address helps autistic people address things that they struggle with. So ot for a sensory sensitivity, for example, um, there's, there's a big difference between a therapy that is trying to eliminate autism, that an autistic person didn't want to ever participated in the first place. And something that is initiated by an autistic person, or whose goal is to help them find ways to manage life better as an autistic person. Non autistic people participate in all kinds of therapy. So I think people if there's someone who claims that a neuro diversity advocate doesn't agree with all therapy, that's that's really not be, that's really not the majority of them, what that paradigm is representing, that's maybe a really small fringe subset. So this, this next one's really important, because you could. So some people have said, supporting the neurodiversity movement is kind of dangerous, because if too much public attention is brought on accepting autism, then it might lead to a lack of funding to support like services that autistic people need now. So those who need to have high support needs. This, I read this perspective, in an article several years ago, it was written by a neurotypical parent scientist, who said, basically just this and she was kind of she was going kind of speaking against this idea that, well, you could say, oh, neuro diversity works for your family. And that's great. And you can take that, but it doesn't work for mine. So why don't we all just say whoever wants it takes it and whoever doesn't, can ignore it. And she's saying, there's still a problem with that. Because if too many people are on board with this neuro diversity train, then it might lead to people ignoring the rest of the population who actually wanted a cure for autism or who wanted to fix it, or these people with high support needs that really need a lot more help than what you speaking people do. So I interviewed two people about this topic specifically, and these are listed on my website, and I can show my website at the end. But Julia bascom is the executive director of the Autistic Self Advocacy Network in the United States. And she I thought had a really great response for this sort of this sort of idea, and she was explaining that the the idea is that the neurodiversity movement tries to advance things like inclusion, self determination, bodily autonomy, and basically Human Rights, those are the things that those are the things that are of greatest importance to the people with greatest impairments. So she's she's saying is, the autistic people who are pushing forth this neurodiversity movement, they are trying to help out, the people you're talking about, they're trying to help out with people with the highest support needs they're advocating for all of these things are going to help them, they just might not. They might not be on board with this idea to eliminate all of autism from the entire human race. But they are they are trying to help those people. And Marcel, who is the she wrote everyday Asperger's, her pen name is Samantha craft. She spoke about this too, and she just said, we really should be creating like safe and comfortable conversations about neuro diversity, and kind of working towards unity, we should try to be on the same side instead of trying to separate and segregate a culture that has already been segregated and separated. So her point was just we should be listening to people on the spectrum who are talking and not dismissing them, because they may not look exactly like our kid.
Unknown Speaker 16:11
Okay, so another important tenet of the disability civil rights movement. And if, if you've been in this space at all, a little bit, you may be familiar with these, just the are the medical and social models of disability. And there's a civil rights model of disability, that's kind of a an extension of the social model. But a medical model just basically says that the person's disability is a problem that lies within the individual. And the social model says the person's disability reflects a problem with the environment. So these are just some examples of the social model or the medical model at play. So you're trying to participate in a Google meet for work, and the Wi Fi glitches, you can't hear anything, is a problem with the Wi Fi, or is it with you? So the social model would say the problems the Wi Fi, and then if you're the problem, it would be medical model. So similarly, the air conditioner broke, and the place you live was 95 degrees at night while you were trying to sleep, you couldn't sleep? And then you function inefficiently at work the next day? What's the problem there? Is that the air conditioner? Or is it you and your inability to adjust? And another one would be a person who could communicate using an iPad is unable to communicate with another person because the iPad is unavailable? So what's the problem there the iPad being an unavailable? Or is it the person who relies on the iPad to communicate. This is a pretty commonly shared graphic about the social and medical model. woman in a wheelchair at the bottom of stairs with a sign that says this way and everyone welcome pointing directly up the stairs. And similarly the medical model would say her impairment is the problem they should get they should cure her or give her prosthetics. The social model would say the stairs are the problem, she should build a ramp.
Unknown Speaker 18:11
So these are just this is just explaining that example again. But another situation that might relate more specifically to people on the spectrum would be an autistic student cannot deliver an oral presentation because the fluorescent lights are too distracting. The medical model will be students sensory sensory sensitivity is the disabling factor and social model will be the fluorescent lighting is the disabling factor. I've spoken to in a lot of the interviews I've conducted. I've heard many, many, many people say that there are things about being autistic that they don't like and that they if they were at if they were given the option they would gladly do away with. But there's also a great number of things that have to do with their environment and things run their environment would change, they have no desire to change themselves, it would just make living life a lot easier. So the social model of disability just challenges people to change their vision of normal to stop assuming that typicality is always superior. I think that's really common in our culture like, just because it's more prevalent doesn't mean that it's morally superior or that we should be advocating for that for everybody. There's a lot of behaviors and a lot of things we do as humans that are just neutral. And then also just it creates a more inclusive environment when we're looking at our environment it in ways that can change we realize how we can be more accepting of the people around us. So instead of asking people to change to fit existing sipto symptom system, so we're looking at how we can change the system so that people more people can fit. So some people like to consider it consider autism specifically as more More of a hybrid model. So some co occurring conditions with autism, for example, are more easily classified in the medical model. whereas others make more sense in the social model. So it's if the neurodiversity paradigm asks people to let the autistic individuals decide what conditions that they might want alleviated, and what which ones, they might want accommodated. So there are so many different co occurring conditions with autism, that it makes it kind of difficult to attribute specifically symptoms to the autistic condition, sometimes in some cases. So when people say they want to eliminate autism, it gets a little bit a little bit unclear, like Do they really want to eliminate the entire autistic condition? So there's no autistic people anywhere everywhere anywhere on earth? Or are they do they really just want to get rid of all the CO occurring conditions, or both, both the autistic and co occurring conditions, as common co occurring conditions would be like gi issues, sleep disorders, sensory processing disorders, OCD, anxiety, depression, seizure disorders, there's a lot of other things that kind of can get in the mix. So because all of these conditions can exist separately, from autism, like they have their own diagnostic labels, and they can be diagnosed separately, you don't have to be autistic to have these other conditions. It makes it difficult to attribute symptoms of these conditions to autism. But on the other hand, because they are so common among people who are diagnosed with autism, it's really difficult to pinpoint where the autism begins and where or where it ends and where something else begins.
Unknown Speaker 21:58
So this, I just wanted to share this, this is a great meme from sky is crisp anello. He's from the UK is a really popular writer and speaker in the UK. And he has a great website called autistic not weird. So you might want to check that and I'm going to share I'm going to share several resources throughout this. So if you have your phone out to take a picture, or jot down some notes if you want, but I'm going to share some resources that you might want to refer back to later. But Chris spinello, I think he's he's a really great autistic person to follow. Because he's very understanding of parent advocacy mistakes. Like I said, I've made a lot of mistakes. And when I first started realizing things that I was doing that wasn't aligned with the autistic community, I was very interested in figuring out how many more things there were like that. So I would interview a lot of people and ask what are the most common mistakes you see neurotypical parents make? And he was Crispin Allah was very, was very good to like, pad all of his suggestions with like, statements of being really understanding and grateful for any neurotypical support. So I always recommend him as somebody, like he's just a very, very great guy and has a great message. And he's very understanding that people are trying to do their best. Where some autistic advocates have a little harsher tone, but I don't want to condemn that either. Because I think some of the most important things that I've learned have come from people who have said things very bluntly. So I think there's learning in all different styles. But so this is just saying, this meme is saying like, it is important for us to accommodate for autistic people because their whole lives are spent trying to fit into an environment in a world that wasn't made for them that wasn't that doesn't like or isn't accepting of them, perhaps I should say so things like look me in the eyes stop flapping. Other people are gonna think you look weird. You have to learn small talk in order to make friends. We're gonna keep taking this photo until you smile correctly. What do you mean you don't like being touched? Give me a hug. Everyone has to wear the same uniform, your sensory issues aren't allowed to matter. So those are just you know, some of a bazillion examples. So, another, this was another really interesting topic. Another important part of understanding neuro diverse the whole neuro diversity movement is understanding if you are neurotypical is understanding neurotypical privilege. And that what that means is it's the ease with which neurotypicals navigate life because their society has developed accommodations that cater to most of their needs. So by better understanding, neurotypical privilege, it's easier for advocates to recognize the needs of those around them and try to understand the lived experience of people on the spectrum and really just better accommodate support and include them. So these are some Example, polls of neurotypical privilege and there's a ton more, I just pulled out a few that I thought stuck out the most to me. If I have a medical problem, I do not worry that my doctor will dismiss it as part of my neuro typicality. And I've heard this from so many autistic adults too, because they have a lot of CO occurring medical conditions and they feel like sometimes they can't be trusted. Their doctors make them feel like they can't be trusted. Another one, I am not considered more dangerous and more likely to commit a crime because of my neurology. I can reveal my neurology to my boss and co workers without fear of losing my job. No one speculates about whether I am competent to raise children based solely on my neurology. When prospective parents speak of wanting a healthy child, I know they mean a child like me. I can discuss my interests at length without this being viewed as a symptom.
Unknown Speaker 26:03
So these are some things that neuro diversity advocates, if you really understand and believe in the paradigm and you're trying to create either a neuro diversity inclusive environment for your home or your therapy practice or your school. These are some things that they tend to do emphasize immediate supports and societal change. Most neuro diversity advocates also support research, but it's a little more specific. So it's more about how can we how can we understand autism to help people who are autistic now and improve the lives of autistic people. They avoid talking about autism cures, and a lot of people think this is on the spectrum think this is an impossible pursuit anyway, because people who appear to be cured really end up just being more skilled at passing as neurotypical. For example, I had a I know of some friends who were in a therapy program with my son A while ago, who were trying to get their son tested and tested and retested because they wanted to see if the therapy worked, and they thought if they could shed the diagnosis, then it would prove that he wasn't autistic anymore, and that the therapy was successful. So, um, I've, like I said, in the 170, plus people that I've formerly spoken to, I've unanimously heard that this is not something that goes away, it's, you just become better able to adapt to your environment. And it might not be as visible. But this isn't something that just goes away. So it's important for I think, parents and therapists or doctors or just to understand that, so that they can help the people around them. But the goal shouldn't be to get rid of the autism. Because there's different ways that autistic people can mask to make it appear like that's the case, but they still are going to need they're still going to have the same need similar needs as they grow into adulthood. So, should we be preventing autism? This is a question that a lot of autistic advocates that I've spoken to have a pretty strong opinion about. Because so much time and energy and money is spent on autism prevention campaigns. It's certainly misleading to claim that all autistic people are on board with the neurodiversity movement. But I just if you haven't been engaging directly with the autistic community, I would really encourage you to do so because it's incredible people and incredible numbers, the majority are coming forward and saying the neurodiversity movement is want to be embraced Autistic rights are the next civil rights movement. So just, I would encourage us keep reading things that are being put out, but the points on the slide just illustrate where if you're talking about us strictly in autism prevention campaign, where that becomes a little bit problematic. So like, or for example, trying to like cure autism or like prevent future autistic birth.
Unknown Speaker 29:13
So the autistic brain is complex. And so these are the first bullet point describes some areas that are that the ways different ways autism can present itself. So autistic people exhibit incredible variations. So like I said earlier, there's so many co occurring conditions. So it's kind of complicated. About what you mean when you want to eliminate autism. Do you want to get rid of the CO occurring conditions, everything about autism, the entire artistic condition, it just gets a little unclear about what you're trying to prevent. And I mean, I haven't even brought this up yet, but I'm sure some of you know there's advantages to having an autistic brain. My oldest son who just turned 13 is has cerebral palsy and he he struggled a lot when he was younger with fine motor skills and balance and coordination. But he also was hyper luksic, and could read very, at a very young age and was fascinated with writing numbers and letters, spelling words like the age of two and three, like even before he could talk. And he also enjoyed maps. And he would draw maps, like when he was three, he could outline, he would could draw the entire United States freehand, we would, that's how we would keep him occupied in church, we give him a piece of paper, and a pen, and he would sit in the church pew, and just draw the entire map of the United States and he write the capitals, and he'd write the names of the states. And he was he was three and everybody, you know, whoever was in the Pew behind us was like, you know, amazed, but that's what he likes to do. And because he did that, so often, his in his handwriting skills were incredible. I mean, at three and four, he had the best handwriting ever. And I believe that that's this is just one small example. But I believe that's one one way that his intense focus and his passion for something was able to help him overcome a physical disability a physical limitation that he had with a cerebral palsy. And there's, there's many more I'm sure those of you who have, you know, autistic people in your lives, I'm sure you can think of some interesting advantages that the people in your life have as a result of being autistic. Um, so and this, I think, is really important. So while some autistic autistic traits are easily identified as disabling, like, it's really obvious that this is a really hard thing to go through. There's some that are really just condemned by society because they're strange or weird or different. So for example, I think, I think a common one would be stimming. Like, rocking or Cynthia is a different is a certain kind of STEM. So everyone stems we all stem, I'm kind of doing it now a little bit, I'm tapping my foot while I'm talking. But But what makes bobbing a leg or tapping a pencil, which are common neurotypical seems like what makes those things so much more superior to rocking? For example, I have I have a friend, I think people are, I think people are kind of the idea of the purposes of stimming. And the importance of stimming, I think is becoming more widely accepted. But there's still plenty of plenty of schools and therapy practices and homes, that are trying to eliminate some of those behaviors that are really self self regulatory. If you had if you're, if your student or your client or your child is able to communicate better when they're rocking back and forth. Why are we telling them to not do that? We just think other people think they're gonna look weird. And it sounds, it sounds like that might be a little outdated. But I, at least in my personal experience, I know it's still going on. I have friends who are in therapy that are trying to get rid of that for their children right now. So I think it's important for us to try and figure out what we're trying to identify as needing assistance and ask ourselves, is it really that important that this is that we're trying to get rid of this trait or that trait. But and I do want to say like with anything, not all autistic people want the same thing. And some people will would readily accept a cure. Like, I'm not saying this is a representative the entire community. Some people have adopted a deficit mindset, an autism deficit mindset as a result of how they've been brought up. And, and maybe some people wouldn't want to cure, but they they'd readily accept the opportunity to shed some of the most difficult symptoms.
Unknown Speaker 33:48
So this is like, like, a lot of the things I'm saying I want to this is, I want to pad this next slide with the clarification that I'm going to go over some language preferences that neurodiversity advocates use. But I want to say that, again, that they're not universally accepted. So many, but many, many people do ask for them, these language changes. And historically, the default and sometimes promoted approach, especially in special education training, at least historically has been, we're going to use these types of languages and are these types of words and people are on the autism spectrum are saying, We don't want you to use those words anymore. So I just I kind of like to talk about this because these are things that are changing in the autistic community. And when I first started learning about mistakes I was making, I wanted to know what I was saying wrong because so that I could say the right things that the people on the autism spectrum would be okay with. And I knew I know that just changing your language doesn't change your mindset right away. But I know that I knew that if I could start speaking that way and practice speaking that way around my son, that it would help me develop the mindset that I wanted to have eventually, so. So instead of saying he has autism, for example, you could say he's autistic, or he's an autistic person. And you would use that if the person uses identity first language. And this is the difference. So this is the difference between identity first and person first language. If you haven't heard of those terms, there's just go ahead and look, you can look them up, there's plenty of autistic people who are speaking about their preference for identity first language. And that emphasizes autism as a part of their identities rather than something that they can get rid of.
Unknown Speaker 35:41
And some people equate their artistic identity with their femaleness or their race identity, for example. So just like you wouldn't say, person with femaleness, you would call them female, if they identify that way. They don't want to be considered a person with autism they just wanted, they just want you to say they're autistic. And that used to be a very derogatory term. And so some people I will still get, my website that I manage is called learn from autistics calm, and I will still get comments are like, someone will fill out my contact form be like, I love your website, but you really need to change your name, like it's not very nice to call people autistics, that's like, I think you're, you're kind of off on your mission or something like that. And I have to politely respond. I'm doing that purposefully. It's because that's what the community is asking for. So but again, you would, you would defer to whatever the people in your life choose, if you're, if your son or your client or your student, if they or your whatever your child, they, if they say they prefer person first language, then you would use that. It's just not up to us to force for some to identify certain way. So the next one says, talks about functioning labels, he's high functioning. Instead, you could say he's verbal, or you could comment on a very specific strength, if you're trying to describe what they're doing, or how they present, you could just describe some of the things that that they're strong in or that they struggling. So this is another hot topic in the autistic community. And you can find plenty of information online about this. People have been speaking out against functioning labels for a long time, they're not diagnostic labels, they don't actually refer to a category on the spectrum. It's just language that people have used, culturally, the problem is that they're not very informative, and they can often be misleading. So some people might be highly considered high functioning in some environments, but low functioning and others. And so it's really more accurate, people are saying the more accurate ways to describe some of their their strengths. So I talked to an artistic fiction writer, CEO, Lynch A while ago, and I thought she just had a great response to this whole idea about functioning labels. So I'm gonna read a quote from her here in a second. But she said, Really, people who are labeled autistic people who are labeled severe, are really people who can't control their muscle movements, and often require one to one care. That's what that's how what she says is most common. Those are the types of people that she sees people describe as severe. And she says, this is a quote from her. There's no question that their autism affects both them and those around them severely. So I can understand why the label is used. But really it isn't it that their Autism is more severe, is that they have motor control issues called a praxian, which I do not have. But if you ask any autism specialist, if Autism is at heart a motor control problem, they will tell you no. Maybe they're wrong. But for now, apraxia is considered a side order to the main dish that is autism. So if autism isn't a motor control problem, then why do we call autistic people with motor control problems? severe autistics? Shouldn't they be autistic people with motor control problems? or shouldn't they have a praxic autism. And that's the end of the quote. So she's just advocating for more specific labels. And it's it when you use high and low functioning and becomes very simplistic, people who really do struggle in a lot of areas of their life, but maybe they can maybe they're verbal, and a lot of other areas, they tend to get overlooked their knees get overlooked when we use these functioning labels. So, anyway, a lot of people, most people on the spectrum don't like them. They like different sorts of categorizations. And the next three statements on here are really just ways of discussing autism that treat it like a disease that needs to be eradicated, which is the deficit model of autism, rather than a neutral neurological condition. So these suggested alternatives are emphasizing supports for positive living. So instead of saying we're lucky, we caught it early, you, you might say something like we're committed to helping her thrive in her environment, we're learning how to make the changes she needs, and she's learning to adapt better every day. Instead of saying we treated their autism, they're cured. Now, you could say, we're offering them the right supports to help them succeed in the ways they want to. And you could, instead of saying he doesn't look that autistic anymore, you can say he's learning to adapt to his environment and advocate for himself. And those, those are just some of the most common things that I've seen.
Unknown Speaker 40:37
So one of the most visited and commented on articles on my, my blog, is titled The problem with the autism puzzle piece. And it just outlines some of the things that the autistic community is saying about odd puzzle piece symbolism. For example, people some people don't like it, because they say it represents that their confusion and mystery. And they don't like to be identified as a puzzle. They're human. So like they say, where people people not puzzles is a is a slogan that you'll hear some people say, it sometimes suggests something's missing, like something for they don't like the idea of being associated with something that's missing. And there are people who have read, kind of redefined what the puzzle piece means, in more positive ways. And they use that and that's totally fine. But the original symbol of the puzzle piece, the original symbol had a child crying on it. And people in the spectrum don't like many people don't like that it has the history behind it, and that it was designed by someone who didn't have autism and who was just had this deficit. wonder, does it upset model understanding of autism. So, the kind of suggested alternative coming out of the autistic community is the rainbow infinity sign, which symbolizes connectedness and diversity, that's what it was symbolized. So I, you know, if you're someone who really likes your puzzle piece, swag, I mean, I think if the people around you who are on the spectrum, have redefined it to something positive, and they prefer it, then that's fine. But I as a neurotypical parent, I will never default to the puzzle piece, unless the people in my life have told me, the autistic people in my life have told me that they like it. My son who's 13 doesn't really have an opinion on it. So my default is always going to be it's going to be this the Infinity rainbow sign, because I think it's because that's what's supposed to symbolize neurodiversity specifically.
Unknown Speaker 42:49
So the benefit, those who embrace the neurodiversity paradigm can and have experienced some of the benefits below. So it really helps individuals achieve educational, social and professional rights throughout their life. It builds self confidence. I mean, I have I have always talked about, we've talked about autism, from a really young age with my son, because we want him to, we want him to think it's a neutral, it's a neutral thing. Some people have autistic brains, some people don't. And we want them to understand how autism affects him, so that he can advocate for himself in the future. I, it's, it hasn't always been some people I know some families who have tried to hide hide the label from their kids. And they found out much later into adulthood that they had it. And the adults, the people on the spectrum, were not happy about that a lot. Most most of them are advocating for talking about autism at young ages. I was talking about functioning labels in the earlier slide. And my brother who's on the spectrum, once told me that he got so sick and tired of people calling him high functioning. Because he, he thought people were people thought they were using it as a compliment to him. And he kept saying, Do people really think it's a compliment to be considered, like high functioning like to be considered almost normal? So that really bothered him in that way that that was described as like, yes, like, some people think those things are like that you're actually giving them compliments, but you're not in fact, you might be hurting their self confidence. So the neuro diversity mindset I think just helps people develop confidence in their own identities, just like anybody else would. And it allows individuals to realize the power of positive thinking, making the most of their reality, and giving their using their gifts to achieve goals. It promotes peace and acceptance, teaching society to embrace disability, and improve living for all autistic or otherwise disabled people. And it helps autistics achieve varying levels of independence as they learn to communicate their specific needs and utilize their talents. So this if you have, if you have your phone, you want to take a picture of this slide or screenshot these, this is a great list of advocacy resources, if you're interested in some advice coming right from the autistic community. So some of these are anthologies with essays that are authored by people on the spectrum. And some of them are resource hubs where they might have like blogs that are a collection of from artistic authors, or other resources that are promoted by people on the spectrum.
Unknown Speaker 45:41
And this was a list I mentioned earlier, if you're interested in hearing from some non speaking autistic advocates, so people who embrace this paradigm and who are speaking about autism, and autism acceptance, these are just a few that I've that have published several books and articles. Again, I think that, and I had I've had people that I've interviewed have said this to me, too, I've, it's really important to be open to a lot of different artistic advice, please don't shut down people because they don't look exactly like the autistic people in your life. But I know, I understand that seeing a bunch of different perspectives is really important and really valuable. So these are just some names of some people that you may want to look at. And I'm going to try and wrap up here. So we have time for questions. But I just want to end with some quotes from Jim Sinclair's s really famous essay, I'm not sure if you're familiar with this or not, but it's called don't mourn for us. It's he's there. Sinclair is a really popular Autistic rights advocate. And this essay was originally published in the autism network, international newsletter way back in 1993. And these, these quotes, kind of sum up the sentiments of the neurodiversity paradigm. So Sinclair says 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's not possible to separate the autism from the person. And if it were possible, the person you'd be you'd have left would not be the same person you started with. And this is just Sinclair's perspective, but says, Therefore, when people say, I wish my child did not have autism, what they're really saying is, I wish the autistic child that I have did not exist. And I had a different non autistic child instead. This is what we hear when you mourn for our existence, that your greatest wish is that one day we will cease to be, and the strangers you can love will move in behind our faces. And I remember reading that as a parent for the first time and thinking like, Oh my gosh, like that sounds like I hope my son doesn't grow up to think that. Sinclair says, yes, there's a tragedy that comes with autism, but not because of what we are. But because of the things that happened to us. be sad about that. If you want to be sad about something better than being sad about it, though, get mad about it, and then do something about it. The tragedy is not that we're here, but that your world is has no place for us to be. So just try to I just would encourage everybody, just try stay in touch with the autistic community, just add them to your list of experts you consult. I think, when I got started, I think I like maybe most parents, I didn't even think about looking for autistic experts. I was talking to my doctors and my therapists and the teachers. And I didn't realize that there was a huge untapped resource. That has since been the foundation of where I've gotten all of my information that I believe 1,000% and has helped our family and even if you don't agree with the principles here, if you don't think they really fit your family, your lifestyle. I just keep in mind that constantly speaking negatively about your child, or your your clients or your your students will surely hurt self esteem or similarly saying things like you love them despite their autism or you love them, but not their autism. Things like that might make them feel bad about something that they they can't control.
Unknown Speaker 49:24
Teaching and modeling how to live a positive artistic life will help you and your child embrace what you can't control and truly appreciate their unique artistic identity. So this is another meme by Chris spinello like I shared earlier so it's he makes the point that positivity about autism is never positivity for positivity sake sake. So he says I never shy away from discussing autism has difficulties. Sometimes I'm positive about autism because it's literally the safer option. And then he this meme is just talking about how historically when you But label groups of people is less than it never ends up well. So it's just like a conversation says we need to start seeing autistic people as being brilliant. And then the responses. But what if they're profoundly disabled with huge learning difficulties, then we should still see them as brilliant. A person's worth shouldn't depend on whether or not they have a disability. True but. And when society is told that a group of people should never be seen positively, that group starts to be seen as less worthy of love. respect, dignity, or human rights in history teaches us how dreadfully that always turns out. Oh, so really, it's better to see autistic people as brilliant. Regardless of their support needs, their futures are safer that way. fairpoint autistic people are brilliant. Again, that's from Crispin. Hello. So thank you so much for taking the time to listen, that summarizes a lot of what I had to say, I really hope that the information here may have been something different than what you've what you've heard about in your studies of autism. And my email is right there. And I'd be happy to answer any questions now, but I can also answer questions via email. After the if we run out of time or after if you think of something later.
Unknown Speaker 51:15
Jenna, this is Mary Claire, I just wanted to let you know that. At the beginning, you asked where people were coming from? Yeah, on the calls. So we have a grandmother of a 19 year old on the spectrum. parents of children affected by autism. Rich lamb board is the Assistant department chair for behavioral sciences at Ivy Tech here in Columbus. Who else is here? Last minute I'm getting there. Wonderful. All of them slow. We have a speech language pathologist, pathologist works with children ages three to five oh, great leads. So lots of people were on the call.
Unknown Speaker 51:53
Great. Yeah, yeah, different kinds of people. And I do have, I would encourage you guys to to look at look at my website, I have a lot of interviews with different experts on the spectrum. There's an SLP, who is on the spectrum. And so she talks a lot about her profession and how she treats her clients within this neurodiversity paradigm. And there's some psychologists, and anyway, so I that's a really great resource just learned from autistics calm, but that's awesome. I'm just scrolling through the chat right now. To see if there's any, or feel free to throw in a question if you have one. Okay, so these are just people introduce themselves. Okay. Yeah. So we'll all feel free to chat. If you guys have a question, I'll just show you real quick, the way I stopped sharing my screen didn't I was going to show you a sheet I can share again, if we have time.
Unknown Speaker 52:51
Okay, I was just gonna show you my website, because I think there's an area, that would be good. So I also do have this Resources tab here that has a list of autistic bloggers. And on the bottom of this list is a is a link to a massive list. It's called the actually autistic blog list. And it's one that was put to you, I think they started putting it together maybe four or five years ago. But it's this huge index that people like if you just want to learn, get some advice from people on the spectrum. And it talks about who they are when they were diagnosis, so you can kind of read a little bit about them. So that's a really great resource. I also have this page, I think I might have this might have all been on my slide. I know if I included all these up. But there's like a resource up here that these are all places that prioritize autistic voices and input. Because sometimes it's hard to tell if the organization that might be the most popular by you, or what is doing the fundraising and promotions around you. It's hard to tell if they have included autistic input and a lot of the things that they're doing or how they use their money. So I just there's a list of some that prioritize autistic voices like they have like it's either completely runned by autistic people, or they have autistic people on their board. But my blog has a ton of interviews with people on the spectrum. And if you want it they have a lot is tagged really well. So you can search for search for whichever title but the interviews that I talked about, for example, Julia bascom was the executive director at a sand she had a lot of really great stuff to say about just advocacy in general, like who you should be advocating for and how you should be advocating. But does anybody have a question? I feel like I might have said some controversial stuff. So I'd be surprised if I didn't have any questions. Stop my share. See Feel like?
Unknown Speaker 55:06
Okay, I said, see somebody says I feel like it's made me think about a lot of people talk about autism clumsily or full on negatively, but not in earshot of a specific person they're talking about without considering an autistic person might be in the room and hear what they're saying. Yeah, I think that's really important. First of all, because you don't even Autism is in some ways, an invisible disability in a lot of people. So you don't know who's around you. But I thought that was honestly I thought that was like one of the most important things that I've learned and tried to advocate for. And I was so grateful that I learned about it from a I learned about it really on in my son's diagnosis, is that how you speak about, like, the way you speak about autism is so important to like, the messages, that is the message that it's sending the people around you. So, um, like, I talked about using the word autistic people neutrally, some people use the word autistic in a derogatory way, which is completely inappropriate. But when you talk about autism as if it's neutral, when you talk about, like, different people have different brains. When you talk about that from a young age, and you talk about it neutrally, like we've had so many conversations about autism with my kids, before we even talked about autism deficits that they don't really, like, it's just something like, it's just something everybody understands, like, Oh, my kid has an autistic brain and, and I and I don't drive a neurotypical brain. So that's it's just something that we've talked about a lot, we haven't shied away from it because we haven't shied away from it. Because when you shy away from it, it's or you talk about it in hushed tones, or you, you try to talk it out of earshot, then it becomes something bad. And certainly there's times where you have to discuss your difficulties, and you might not want to discuss them in front of your child or your client or your students. But I think that Yeah, the way we use our language is so, so important. My son is 18. And he doesn't like to be called autistic at all, he hasn't accepted this yet. Anyway. So I think it probably depends on Um, I think it probably depends on what how historically. Okay, the question is my son's 18, he doesn't like to be called autistic at all. And he hasn't accepted this yet. Any advice. So I think, again, I think probably the most important thing is just to start discussing autism in positive ways, so that he doesn't think it's negative. But if there's a way to, if there's a way to slip in different writings by autistic people, I, I just ordered my son. I just ordered my son a book about on autistic teens. It's like an advice book for autistic teens. And it's written by someone on the spectrum. So I was trying to kind of slip that in there. And I he didn't ask for it. I just said he reads a lot. And so I I just ordered for, Hey, I got you this book you might be interested in. So I think what I've heard for autistic adults is they felt so much. So much peace and so much like self validation is when they actually started talking to people in the autistic community. So there's, there's a forum called I think it's called the wrong planet does for autistic people. So if there's any way to get him like connected with the autistic community, we can see people reading and writing things about autism that are that are positive. That might be okay. That might be a good idea. But it's It is, it is tricky once it is tricky if they've developed some kind of deficit mindset. So I think the best way to do it best way to handle things like that is just in your home. Autism is a positive thing, or it's neutral, like we don't like there's ways, there's ways that your son may struggle, but there's ways that I struggle, and there's ways that everybody else struggles and what we do in our home is we just try to identify different ways people struggle when we try support that. And if there's anything that you can find that's positive about being autistic or positive about his brain, then you can talk about that in the same way you talk about the positive things, but okay.
Unknown Speaker 59:22
Okay, yeah, and I think I was gonna say one more thing, if there's some of the people on the call that are therapists I think there's a lot of different there's resources on becoming like a neuro diversity affirming therapists who are just I don't know, I think it's great to start conversations about neuro diversity and some there some therapy places are really forward thinking and I think, have already incorporated that. And others haven't. So I think it's just, I don't know a good conversation at least have how do we, how do we incorporate neuro diversity into our practice? I'm sorry, I interrupted somebody. Okay. I
Unknown Speaker 59:56
just I don't see any other questions. Okay. Um, well Anybody have any more questions for Jana? Remember, you can always email her and if you need that email address I can give it to you also, if you don't have a written down, Jana, I want to thank Tessa in the background helping out. And we will see you all later. Thanks again, everybody. Thank you so much. Bye. Thank you.
Transcribed by https://otter.ai