Interview between Speaker 1 (Meg), Speaker 2 (Jules Edwards), and Speaker 3 (Meghan Ashburn)
Episode 63: The Children Who Deserve a Better World
[Introductory note]
Hey, Meg here. Here’s one of my pet peeves as an occupational therapist: it’s taking continuing education trainings that have absolutely no impact on my work. You know, the ones that give you a framework, but don’t tell you how to apply it? Or this is maybe even worse to me — the ones that just don’t say anything impactful at all. When I founded Learn Play Thrive, my goal wasn’t just to provide continuing education trainings, it was to provide trainings that leave therapists feeling really confident at using the new strategies in their actual work. And also, that help therapists feel empowered to work in a way that is more aligned with their values. The reception to this from the therapy community has been incredible, and Learn Play Thrive continues to grow. We have neurodiversity-affirming continuing education courses that are registered for AOTA and ASHA CEU’s. We continue to add to our course catalogue, and we have three free trainings. You can check out everything we have to offer at the Learn Play Thrive Education Hub, which you’ll find at learnplaythrive.com/trainings/. Thanks for being here.
[Introductory music]
Welcome to the Two Sides of the Spectrum Podcast. A place where we explore research, amplify autistic voices, and change the way we think about autism in life, and in our professional therapy practices. I’m Meg Proctor from learnplaythrive.com.
Meg:
Before we get started, a quick note on language. On this podcast, you’ll hear me and many of my guests use identity-affirming language. That means we say ‘autistic person’ rather than ‘person with autism’. What we’re hearing from the majority of autistic adults is that autism is a part of their identity that they don’t need to be separated from. Autism is not a disease, it’s a different way of thinking and learning. Join me in embracing the word ‘autistic’ to help reduce the stigma.
Welcome to Episode 63 with Meghan Ashburn from Not an Autism Mom, and Jules Edwards from Autistic, Typing. Together, Meghan and Jules will help us dig through everything that is happening now for families of autistic kids, from going through the diagnostic process, to looking for support from other parents, and looking for support from therapists. They have so much insight for what we as professionals can do to create the world that autistic kids and their families deserve.
I’ll tell you about our guests. Meghan Ashburn is an educational consultant, parent mentor, and co-author of a brand-new book that she wrote with Jules called ‘I Will Die On This Hill: Autistic Adults, Autism Parents, and the Children Who Deserve A Better World’. Meghan is passionate about accessibility, inclusion, and communication rights. Her website and her social media, Not an Autism Mom, are loaded with resources to help educators and parents support autistic children inside and outside of the classroom. Our other guest today, Jules Edwards, is a returning podcast guest who you heard on Episode 59. She is an autistic Anishinaabe woman living and working in the Minnesota metro area. Jules is a writer, gardener, accountant, and disability justice advocate. She’s passionate about improving child safety and disability policy. Along with Meghan, Jules co-authored the fabulous new book, ‘I Will Die On This Hill’. Go check it out. She blogs on social media as Autistic, Typing. This interview covers so much ground, I’m just gonna let it speak for itself and jump right in. Here’s the interview with Meghan and Jules.
Hi, Jules and Meghan. Welcome to the podcast.
Jules:
Hi, Meg. Thanks for having us.
Meghan:
Thanks for having us.
Meg:
I am so excited. I just read your book. You and I were chatting before that this could turn into a three-hour podcast episode because there’s so many things that I am excited to talk to you all about from your book. But I want to start with the story of your relationship which eventually turned into this friendship, and partnership, and co-authoring a book situation, but it did not start out that way. In your book, y’all say you started your journey on separate hills, waving torches at each other. Can you share your friendship story?
Jules:
Sure. So, soon after I got diagnosed with autism and I was diagnosed with autism, I’m on the internet trying to find community. And I stumbled across this page on Facebook called Not an Autism Mom. And I read it for a while. And there was a lot of content that I really related to, but some of it was like, a little problematic, you know, but you take the good with the bad, and — or you take the bad with the good, however that phrase goes. I don’t know, I’m autistic. I don’t really like the idiom so much. And so, I would read it, I would really like it, I would apply it to my life. But then, anytime I would see something that I didn’t like, I’ll post a comment. And I would be like, “But listen, what about if you did X, Y, or Z differently,” or, “I don’t like that,” or, and I was very autistically straightforward in my constructive criticisms. And Meghan did not like that. Because I was sharing my criticisms without sharing my encouragement and appreciation. So, Meghan thought I did not like her. And I mostly did —
Meghan:
I thought she was a troll.
Jules:
But sometimes, I was like — [laughs]
Meghan:
I called her a troll.
Jules:
She called me a troll.
Meg:
Yeah, she called you a troll. [laughs]
Meghan:
Yeah. I did.
Jules:
And in all fairness, I said something like, “You are an autism mom, puzzle pieces and all,” or something like that. And, you know, there was some conflict there. And then, one day, we — like, I kind of quit commenting on her posts, because I was like, let’s just hold some distance there. And I was doing my own thing. She was doing her own thing. And then, one day out of the blue, she sent me a message and she was like, “Would it be okay if I asked you some questions sometime?” And I was shook when I got that message, because you don’t often hear from parents after a conflict, like a long time after a conflict saying, “You know what, I’m gonna take you up on your advice about learning from the Autistic community. And is it okay if I asked you questions sometime?” That doesn’t happen. So, I was like, so excited. And so, we kind of started chatting a little bit here and there. And eventually, she voluntold me to write a book with her.
Meghan:
I did. I did. I mean, we were both like learning. I think that when we kind of — when you stopped commenting on my page, we both were on learning journeys separately. Like, I was in the book club reading lots of books, and doing a lot of my own unlearning. Like, and just, we were kind of in separate circles. And Jules was doing a Linn program and doing a lot of advocacy work. And I think that, just that all of that learning kind of helped us put down our defenses and just kind of open up.
Meg:
Yeah, I love the story. And I want to highlight this part that y’all both said. Jules, at one point, Meghan said, “You’re a troll. If you have so many opinions, go start your own blog.” And you did, right? At that point, you went and started your own blog.
Meghan:
And I was following. And I was following that blog, right? I did not know it was Jules. Like, whenever Jules would comment, it would be Jules. And I’m like, you know, go get your own page. And then, like, I found Autistic, Typing. And a lot of things that she was talking about resonated with me because she’s indigenous, her kids are Afro-indigenous, my kids are black and brown. And so, we have that kind of just common interests in common, you know, challenges with kids and things like that that I related to a lot. And so, I would be probably commenting on her stuff and didn’t even know it was her. And so, I think that that kind of maybe brought us back together a little bit.
Meg:
I’m going to venture that this story is fairly relatable to all of us who have gone through our own learning and unlearning process. I mean, I, in my business, was using person-first language for a long time. And the first few times autistic people said, “Could you stop doing that?”
Jules:
You’re like, “No.”
Meg:
I couldn’t — yeah, I didn’t, I didn’t hear it the first time. I don’t quite understand the process of how people change their minds. I keep reading all the books that try to explain how that process happens. But it’s not this like, immediate switch that flips. And Meghan, you talk in the book about how kind of messy and often embarrassing it is to lower your defenses, listen, learn. Like you, I’ve done this publicly in my business over and over, I have to say, or I get to say, “Hey, I had this wrong. Here’s the thing I learned, here’s what I’m going to do differently now,” naming our mistakes, naming our learning moments. Why do you share these parts of your story?
Meghan:
I guess there’s two reasons that I do it. Like, on one side, like, I’m just trying to model that type of learning journey, because it’s hard, right? It is embarrassing, and it comes with guilt. And those — like, those feelings are really uncomfortable. And we have defenses against that, right? Like, we don’t want to feel that way. And I think that part of it is just modeling that yeah, I’ve messed up so many times. I harmed my kids. Not on purpose, but I did end up harming my kids. And so, and it’s okay to say that, and it’s okay to just do better when you know better, right? I know, that’s like a thing, when you know better you do better. But it’s true. And I want other parents to see that.
Like, when you come out on the other side, it’s so much better. And it’s so much easier when your defenses are down to just learn and say — like, if somebody is challenging you. Like, Jules still challenges me, right? We don’t agree on everything. I mean, we don’t. We don’t agree on everything. And so, it’s easier for us now to have conversations when we don’t have the ego. So, that’s like, that’s one part. And the other part is like for autistic adults. When they meet me now, like, I’m completely on board, right? You can say something to me, and I’m going to say, “Thank you,” or I’m going to ask a follow up question, or I’m going to research that, or something like that. But like, so they see me now and I’m on board. But a lot of people who meet me now, they don’t know where I started. They would not have liked me four years ago, five years ago. They would have called me, you know, names. They would have given up on me. And I want autistic adults to see that there is a huge bridge that we have to cross. And it is hard. And there’s lots of feelings that come with it. And just so that we give each other a little bit more grace.
Meg:
The good news is there are a lot of people out there willing to do this work. I, when I started learning about and talking about neurodiversity-affirming practice, my business exploded in the best way, because therapists were like, hungry for that. It resonated with their core values. It challenged them, but tens of thousands of people were like, “Yes, I’m ready to hear this. Tell me more,” which is really hopeful. And it is hard. And there is guilt. And it is confusing, especially when first you learn what not to do and how you’ve done harm. And then, you’re like, “But what do I do?” I’m wondering, Jules, if you have any advice for those therapists who are non-autistic and going through this process of trying to unlearn ableism?
Jules:
That’s a really big question. Because there’s so much unpacking that needs to be done before people can really understand at a deep level what neurodiversity means in practice, because therapists go through years and years of training through the medical model of disability, and that is looking at a person, and that’s it. So, noticing the problems, instead of noticing the person and their character, and their resilience, and all of these strengths that we all have in whatever form of strength that we have. Therapists need to recognize that they’re in a position of power over the people that they serve. They’ve been trained to see people a certain kind of way, and that’s not their own fault. You need to get, you know, you need to pass your classes in order to get into your position. So, that means you have to learn the things that sometimes cause harm.
And being able to have that humility in saying, you know, I’ve gotten through this education system, I have obtained these certifications. Yes, I know the technical, medical model perspectives of these conditions. But I don’t know you as a person. And I want to know you as a person. And I want to learn about how I can help you in achieving your goals. And a lot of the time, I’ve noticed that in therapies that are meant to help autistic people, specifically, a lot of the time there’s this paternalistic view of ‘I know what’s best for you, I’m going to set these goals for you’. And one thing that therapists can do is revert to that concept of self-determination as it pertains to therapy. So, what does the individual want for themselves, what will improve their safety and their quality of life? And really, just be humble and curious in your work. Those are, I think, the best strengths that any therapist can have, is that curiosity and kind of removing oneself from that position of power as much as possible.
Meg:
I appreciate you bringing us back to these core values of humility and curiosity, because I think we can all access those and try to strengthen those muscles and let them be stronger than the training that we have to come in, in this position of authority, which is often so harmful. And y’all both experienced this as parents. Jules, we talked about in the last interview that you and I did together, we talked a bit about your experience of being a parent of an autistic child. And I want to circle back to that. I also want to put your experience of that out on the table, Meghan. You talked about this a lot in the book. You actually start out the book with a story about the assessor in your son’s autism diagnostic process explaining that, okay, your son didn’t feed the baby doll in a pretend play activity because he lacked the ability to access empathy.
So, this is the old insidious misconception that autistic people lack empathy. And he also talked about your son using your hand as a tool because he didn’t see you as a person. I’ve been on evaluation teams, and was trained to say pretty much these exact things. The person training me in doing assessments told me this; I believed it was true. And then, I told it to parents without any critical analysis of it. And this is so damaging. And when you describe your response to hearing this information, you wrote, “How could it be that I missed all of this? Was I in denial about who J was? The person performing the assessment acted like it was obvious to her and the information she was giving me was common knowledge.” It’s exactly how we act — ‘Oh, we have information about your child. Here it is.’ Can you can you talk about the impact of this type of experience as a parent?
Meghan:
I mean, you said it perfectly, that it’s damaging, right? Like, before you go into this autism assessment, you know, you have this toddler, or, you know, if it’s a young child, I have this toddler, and I’m supporting his development, and he’s delayed. I am getting some therapies I’m trying to help him. Hopefully, getting this diagnosis will give me answers. And then, when you get in there, it’s almost as if now your child is just broken. Like, you have a broken human. And that’s, that was the gist of it. And so, now, my job is not to support him anymore. It’s to fix him. Because, you know, that was another thing that she said in there was, “Oh, don’t worry, we can correct that in therapy,” or, you know, something along those lines. So, instead of looking at him through this supportive lens as a parent, now I am in this like, the switch flipped, and now I’m in this other mode of Jesus, we have to fix this. Like, and it’s wrong and it’s damaging, and it hurts the relationship between the parent and the child, because now every moment is an opportunity for therapy, right? Every moment is an opportunity to fix something that is not broken. And so, just like you said, I mean y’all are conditioned to say this, and you’re conditioned to believe the person who’s training you. And we are conditioned to listen to y’all. I mean, all of our lives, we’re conditioned to listen to the doctors, listen to the therapists; they have the training, they know more than me. And all of that is just, it’s just damaging. And that’s where parents start from. They start from that place of ‘My kid is broken’. And it’s untrue.
Meg:
I’d say one of the more frequent questions I get from therapists is, “I’m on board, but how do I work with families who are asking for medical model deficits-based goals?” And Jules, you and I talked about this in our last interview. And the truth is, like you’re saying, Meghan, we professionals are teaching families that. It’s not intuitive. You don’t look at your child and say, “Man, they sure are broken, I sure need to change them and therapize them at every moment of every routine,” they’re learning not from us. Jules, I’m curious about your experience with the diagnostic process. How was it? How was it similar, gow was it different from what Meghan’s describing?
Jules:
It was different. It was very different than Meghan’s experience, but in similar ways. I don’t know how to describe that. So, my children, my older children were diagnosed later. They were 10 and 8, and my second child was delayed in speech. He didn’t really use any mouth words until… I can’t remember if he was about five or six or so. But he could communicate with me because we had natural workarounds. I taught them baby sign language, which is not ASL. But it’s, you know, the simple signs that help parents and children communicate. So, I knew him, I knew what he was thinking. I knew what he needed and wanted. And we did okay. We struggled, but we made it through. But he was not supported. He was not identified. We had no services at all for the first decade of parenting. And I would get a lot of responses like, “Oh, everybody develops on their own timeline.” And that’s true, but at a certain extent, it would be nice for — it would have been nice to have some additional supports, but we didn’t have anything.
But then, when I did finally find the name for it and I sought out specific evaluations, my first child fit that stereotype of the little professor who likes trains. So, that was an easy diagnosis. And, you know, his first team, neuropsych evaluation process, it took a couple of days. And they’re like, “Yeah, check. Got it.” With my second. They refuse to even evaluate him for autism during that team eval until the results meeting. And I’m like, okay, yep, that sounds consistent with autism. That sounds consistent with autism, because they came back and they said ‘Neurodevelopmental disorder not otherwise specified’. So, it’s just like this vague ‘Oh, it’s something’. And I’m like, so do you think that something could be autism? And once I had to, like, explain how what they were seeing fit the diagnostic criteria, then they added that evaluation on. An autism specialist was like, “Yeah, uh-huh.” But it’s funny because you don’t see it unless you see it, and like, unless you have like a really in-depth knowledge. And then, my third child is my daughter. And she, of course, can’t be autistic because she’s an Afro-indigenous girl. And she knows that I like coffee. But it was really dismissive and dehumanizing in similar ways that Meghan experienced, but still very different.
Meg:
Jules, what do you wish diagnosticians and therapists working especially with families of newly diagnosed kids would consider about parents’ experience and perspective when talking to and talking about their kids?
Jules:
I think the most important thing that I think a lot of us lose sight of is that professionals and experts are experts on a certain topic, they aren’t an expert on the child. A parent is the expert of their own individual child because they’ve been there, typically since birth, unless there’s, you know, some kind of intervention that happened or displacement, but parents are there 24/7 taking care of their child when the child isn’t feeling well. Parents are there all the time. The parents know what’s going through the child in a given circumstance, the parents know how a child is currently communicating. And the parent has a lot of insight into the child’s feelings, behaviors, et cetera. And a lot of time that expertise of the unique child is kind of dismissed. And that needs to end.
I feel like parents a lot of the time are treated as if they’re just on the side of the child in terms of, “Well, we know what’s best, you just do what we say for your child.” And it’s like, the parents are supposed to take orders from the providers, but the parents aren’t educated on the things that they need to know. So, information is withheld from parents. Parents aren’t often offered a whole lot of choice because that would have required too much education of the parent, right? If we tell you all the different ways of communication that are available, then you get to have a choice in what you think is gonna work best for your child, right? Well, we don’t want that. We want you to use what’s convenient for us because we happen to provide this service. So, why don’t you want what we have automatically? That can’t happen anymore. We need to make sure that parents are empowered and have the information that they need to make the best choices for their own children.
Meg:
I love that you sort of zoom out for us, that we’re selling something. We’re selling something and we’re gonna say, “Hey, you need what I’m selling,” in order to sell it. It’s not a good setup for empowering families and supporting kids. Meghan, is there anything you want to add to that about what you wish therapists and evaluators would consider in how we talk to and about autistic kids?
Meghan:
Well, I think that my wish for therapists — and to be honest, we have stopped all therapies a few years ago because, you know, we’ve vetted therapists, and even vetted therapists are still coming in with ableism, and the oralism, and all of those things. So, what I would wish for therapists is to learn from the community that you’re serving. And I feel like there’s an ethical responsibility there. And that goes for doctors as well. There’s a lot of information, just like Jules said, you’re only getting medical model information. And I would want therapists to do like you’re doing, Meg, and learn about disability justice, learn from the people that you’re serving, so that you can serve them better, and more appropriately, and more compassionately, and more person-to-person, and respectfully. And that’s what I would wish for therapists.
Meg:
Yeah, in Episode 12 of the podcast, I talked to Dr. Evan Dean and Dr. Scott Tomchek. And they talked about the research that showed that even how we write about kids in our documentation and our evaluations impacts the way parents interact with their children. The amount of warmth, the amount of responsiveness, which makes so much sense with what y’all are describing that we teach parents that our kids are broken and they need to fix it. And then, there’s this stress and this pressure. I want to circle around to this idea of autism parents. Y’all mentioned that Meghan blogs as Not an Autism Mom, which Jules you said in the book, you said is one of the things that sort of drew you to her thinking, “Oh, she must have a critique of autism parenting,” which my understanding is you do now, Meghan, but you didn’t then.
Meghan:
It fits now. I mean, thankfully, you know, it’s my, you know, ways of thinking now, but that’s not why I chose the name. Yeah.
Meg:
What’s the, what’s their critique of this sort of trope of being an autism parent?
Jules:
[Laughs] Meghan just turned off her microphone and pointed. She’s just like, Jules, you’re answering this one. All right, I’m starting this one. So, you don’t parent autism. Like, I mean, that’s the basic part of it for me, is that you don’t parent autism, you parent an autistic child. And I cracked a couple of jokes about that in the book as well, like what is autism parent even mean? But it’s turned into like this club, and it’s an exclusive club of parents of autistic children who treat their parenting experience as some kind of competition, almost, of ‘Parenting is so hard‘. It’s hard for all of us. Parenting is hard. If anybody ever said that parenting is easy, they are a liar and you should not believe any single word that they say because parenting is the hardest and most rewarding thing that any of us will ever do.
But it’s just so much more than I can really sum up into a little concise ball. But like, ‘autism parents’ don’t exist. It’s not a real thing. Parents exist. But autism doesn’t have a parent. Autistic people have parents, and you’re parenting a child, not a condition. And yes, you have to deal with the medical system however that experience goes for you and however you choose to involve yourself in it. And yeah, you have to learn non-traditional ways of parenting a child, that’s fine. Because children aren’t all the same, whatever their neurological status is, whether they’re autistic, or epileptic, or neurotypical, or whatever else. Like, every child is different and you should be adapting to their needs no matter what. But it’s, it’s just amazing to me how people will… I’ll just say that the puzzle pieces are not a symbol for autism, they’re a symbol for autism parents, because it’s really puzzling how they won’t listen to autistic people. Not all of them, obviously. Like, autistic — parents of autistic people are not the same as autism parents.
Meg:
Yeah, it sounds like it’s a critique of — on the surface, it’s a critique of the language, right? Taking on your child’s neurotype as your identity. There’s this element of martyrdom and tragedy, right? So, it goes beyond just the the language use, ‘autism parent’, which is problematic, but to the culture of it, which is insidious. And Meghan, you started there; you described you were looking for community, you found it. But you’ve pivoted. How does that impact your experience of parenting an autistic child?
Meghan:
I think — so, one of my chapters in the book, one of my early chapters, called ‘The Indoctrination of an Autism Mom’, and like, there’s this progression that I went through and that lots of parents go through. And it’s because of all of the confusion and all of the, you know, all of the medical stuff that we’re given, all the things we’ve talked about so far. And then, I talked about how like, whenever I — as soon as I typed the word ‘Autism’ or ‘What is autism’ into my computer, you are barraged with autism mom paraphernalia, right. Stickers, shirts, you know, there’s a skeleton with the puzzle pieces doing the dab. And, you know, I immediately kind of, eugh, what is that? Because I have older kids that are not autistic, right. And so, I never — and they have medical issues — and I never was like, ‘Asthma mom’ or like, ‘Peanut allergy mom’, I just, I was never like that with them. So, I didn’t understand what this was.
But for parents, especially for parents who this is their first child, right, I feel especially… Not sorry for them, but compassion for them. Because they don’t know that parenting is not perfect with any kid. They, all they have to go on is that one kid, right? And it’s not going as planned. And they see this ‘Autism mom’ stuff, and it draws them in. I mean, it’s a community and, you know, we’re the autism moms, soccer mom club, or whatever. And it takes them down a different path. And it’s almost as if whatever path you start on is the path that you are going to go on. And I would rather have parents not go on that path, right, I would rather see parents, when their kid is diagnosed as autistic, start learning from autistic adults first, right. Start with non-speaking autistic adults and kind of gradually going that way because I know parents now who have teenagers, right, that went down that autism mom path. There’s a lot of ABA in that, fixing your kid, and that — almost that competition of like how much of a burden this is, and like how hard my life is now. I know parents that were like that and now they see that like, they have so much guilt and they have so much regret for being in that camp. I’d like them to find the other path sooner, if that makes sense.
Jules:
Yes. And there’s like a larger cost to that as well, because the way that parents talk about and treat their own children, it teaches the world at large how to treat autistic people. So, the way that a parent talks about their child’s support needs, that influences the overall conversation. And when we talk about the media representation of autism, people have had to write articles about how to respectfully discuss autism in news articles and things like that. Why should that be necessary? Because it should be part of journalism and writing about any person with a disability or any person in general. It’s like, don’t be disparaging. So, the larger harm is influencing how we talk about every autistic person.
Meg:
That’s such a good point. And Jules, your critique in the book gets really specific when you talk about the online communities, which are full of pseudoscience, old ideas, advice, like you said, for curing autism, other profit-driven suggestions, and just a lot of harmful content. And I really appreciate that y’all have this vision not just for why this is harmful, but for what it could be. What it could do for families, and like you just described, Jules, the ripple effects that that would have for autistic kids in their communities. I’m gonna quote you at length from the book. You write: “In a perfect world, these groups will be filled with parents offering each other information on attaining augmentative and alternative communication devices and financial assistance. Unfortunately, this is not the case. Instead, most of them are filled with martyrdom and self-pity, where people prefer to be validated instead of educated. The status quo is rarely challenged. And those who do offer a dissenting view are met with hostility. Support equals agreement, support equals being kind, support equals safe, support equals unconditional validation,” the end of your quote there. So, I was reading this and thinking about how it translates for therapists, because our role is to be safe, kind, validating, but it’s also to be honest and ethical. And the autistic child is our client. I mean, the whole family system is, in a sense, but we’re there to advocate for the autistic child. I’m curious how you would want to see therapists approaching situations where parents are asking for approaches that are harmful.
Jules:
So, therapists do need to be, you know, all of the things that you said. They need to be safe, kind, validating, support a person’s growth, because therapy is not a place where someone just goes to be static. People go to therapy to improve their lives in some kind of way with whatever goal that they have. And you can’t do that based on misinformation. And we unpack a lot of misinformation in the book. We talk about how harmful misinformation is. So, one thing that I’ve really come to embrace over the last several years is the phrase ‘Yes, and’. So, yes, this is really hard, and here are some of the ways that we could make it easier. And yes, you’re really struggling, and here’s why that could be happening. So, if parents have misinformation, they’re going to base decisions on misinformation. We need to be able to correct the misinformation. We have to provide additional insight and additional context in order for them to learn more and do better. So, when a parent is asking for something that could be harmful, I would talk about those risks. Because informed consent is the basis of medical treatment in the United States. I can’t speak to other countries.
Meghan:
Can I say —?
Jules:
Yes.
Meghan:
I’m like…
Jules:
Yes. [Laughs] Meghan is raising the roof. I love it. And we just need to make sure that parents have complete information. And I don’t understand how that could be a basis of conflict.
Meg:
I appreciate that. It’s helpful for therapists, I think, to have this tied to our ethical and professional duties and obligation. This isn’t something kind of questionable that we’re doing, it’s part of informed consent, like you said. I really appreciate that that phrasing. While we’re talking about harmful influences, one thing we haven’t actually talked about on the podcast before is Autism Speaks. And y’all do go into Autism Speaks in the book. Can you talk about the impact that Autism Speaks has on the Autistic community?
Jules:
So, Autism Speaks has a very, very problematic history from the very beginning. Until today, they’re still problematic. I think they’re slowly, incrementally changing towards not being as harmful. I know a lot of the initial problematic people have migrated over to the National Council on Severe Autism, NCSA. And by the way, severe autism doesn’t exist. Even though I have a kid with that diagnosis, it doesn’t exist. So, I think we need to remember the harm that they’ve caused as an organization, and we need to look at what do they need to do to repair that harm, and move forward. I live in the real world; I don’t live in an ideal fantasy land. So, I can’t just snap my fingers and Autism Speaks doesn’t exist anymore. So, we need to deal with what we have right now. We have a huge organization that funds some questionable things that we would like them to not fund. And they don’t fund things that we do want them to fund. They have marketing information that goes out that causes harm. What does it look like to change that? Does that mean, you know, we just shut them down every time they put something out? I mean, to an extent, yeah. Every time they cause harm, I think it needs to be called to task.
And at the same time, we need to work to influence the people at Autism Speaks to work towards disability justice, and the more that we can influence them to make systemic changes in how they talk about autism and how they treat autistic people. We need to do something. It’s really frustrating, because, you know, we all know about that ‘I Am Autism’ video — we don’t all know about it. A lot of us know about the ‘I Am Autism’ video from around the time that my youngest child, or my oldest child was born. And it talked about all the terrible things about autism. And it was very creepy. ‘I Am Autism, I’m gonna steal your family and destroy your marriage’, and like, all these creepy things. That had direct harm on me and my family, because when I first heard the word ‘autism’, I was like, nope, that’s not my child. My child is a gift. And, nope, I can’t relate to any of that, because I love my child and I don’t talk about my child like that. So, for 10 years, my family went out with no support at all because of the misinformation. And so, I don’t love Autism Speaks. And we live in a world in which they exist, and we can’t abolish them as much as I would like to. And the Southern Poverty Law Centre is not going to declare them a hate group. So, what do we do with that?
Meg:
Is there anything you want to add to that, Meghan?
Meghan:
I think that parents need to know how much influence Autism Speaks has had on the harm to autistic people up until now. I mean, they are a mega, mega corporation. And I talk a lot about Autism Speaks in the book. And it’s not a smear, but it’s just as an outsider, as a parent looking in, you know, Autism Speaks has all of these runs and walks and give us your money for this and this and this, and people are throwing money at Autism Speaks. And where is it going? Like, I have not seen or met a person who has benefited from them. And they put a lot of money into research, which is harmful. And I’m not anti-research. I’m not anti-medical research or anything like that. But I feel like they need to be held to task to where is that money going? Because it’s not going to AAC, right? It’s not going to communication. It’s not going to, I mean, I don’t know where it’s going, but it’s a lot of research and it’s a lot of money. And they need to be held to task. And, you know, I recently I don’t know if you’ve seen this, but in February, I went up against Autism Speaks in a general assembly for Virginia General Assembly. They had a bill for AAC rights for students in Virginia. And they came, a lobbyist for Autism Speaks, came to close that bill down. And they didn’t oppose the bill, right. But they came not to approve, not to advocate for the bill, right. So, just they’re being there not in favor of the bill, they have so much influence, and so much respect, and so much power in this industry that that bill died that day, just because they weren’t there in support of it. And they have an obligation to do better.
Meg:
One of the things that I used to get families whose kids were newly diagnosed was the Autism Speaks like, ‘First 100-Days’ packet. And I haven’t gone back to revisit it. I don’t even want to know at this point, in some ways, what’s in there. I want to talk about what we can give families instead. One thing is your book. It has very broad appeal, but a really clear audience for it as parents of autistic kids, especially those who are newly diagnosed. It’s a perfect book for these families. I’m curious what other books or websites were impactful in a positive way for each of y’all in learning about your autistic child, or what other books you recommend to families.
Meghan:
I have, actually, on my website, if you go down to Book List, notanautismmom.com/booklists/, our book club down at the bottom, our book club, which is That Au-Some Book Club on Facebook, we actually created a list for providers to give to parents, which includes ‘Sincerely, Your Autistic Child’, it includes ‘Uniquely Human’, and it includes a lot of different books for parents, and we created it as an alternative for that 100 -ay Kit. Instead of getting this 100-Day Kit, here’s a book list with some great books for you to read, some great children’s books for your kids, and if you have a teen, there’s a few for adolescents as well. So, that is one thing that you can give parents.
Meg:
I will link to that in the show notes. What an awesome resource.
Meghan:
Yeah, this all took a really long time.
Meg:
Yeah. Okay, so your book goes into a lot of things like ABA, why it’s harmful, what families can do instead. One thing you circle back to over and over again is the role of racism and privilege. You both had really different experiences of accessing service for your kids. I try to talk about systemic racism, white supremacy, intersectionality on the podcast as often as we can. This conversation, this part of our conversation should be its own podcast episode. But before we wrap up, I want to at least touch on this. What should therapists keep in mind for how the intersection of systematic racism and ableism impacts families?
Jules:
I want to start by reminding professionals that everything they learned about autism in school is based on research of young white boys. Everything you know about autism is only true for young white boys. Everything else that you’re learning through practice, and you’re seeing differences in different people in different communities, that matters. Because we don’t all want the same things. We don’t all have children who are very interested in trains. Some of our kids are. Some of our kids are super interested in the electrical grid. And some of us have kids who are super, super passionate about music, or anime, or drawing, or whatever else. Like, the interests, the passions of autistic kids are so varied. It doesn’t have to fit into a stereotype. And what we know about autistic traits or symptoms as professionals are, you know, trained to describe it as is things like eye contact. Eye contact is different in different cultures. In some cultures, eye contact is considered disrespectful. And in those cultures, sometimes kids do make eye contact and that is like a flip of the paradigm. We know that black and indigenous children in the US, a lot of times they’re pushed down this emotional behavioral disorders pathway. And they’re treated as if, you know, they’re just making bad choices all the time. Whereas, where’s that support that they need to be able to make the choices that we want them to make? Are we making sure that that is a possibility for them? Or are we setting them up for failure? So, that’s something really important to consider for professionals.
Meghan:
If I can add to that, like everything Jules said, but also to recognize and to keep at the forefront of your mind that black and indigenous and brown children are less likely to gain access to things that white kids will gain access to, right? An accurate diagnosis, they’re less likely to be offered AAC, they’re less likely to be offered supports. So, keeping that inequity at the front of your mind to make sure that even if you’re an OT, and Meg, I’ve seen I’ve seen you doing this lately. And I’ve, I can’t tell you how much I’ve been smiling at your posts, because you’re an OT. And now you’re like, “Hey, I’m in the AAC realm, too.” Like, I’m making sure, I’m making it my business make sure that my families know about AAC, my families have access. Because when you’re talking about racial inequity, it’s a multiplier effect, right, with that intersectionality. And the inequity is like, it’s exponential. So, just to keeping that in the forefront of your mind when you when you have families.
Meg:
Thank you both. If people have one overarching takeaway from our conversation today or from your book, what do you each hope that would be? Let’s start with you, Jules.
Jules:
I mean, the one, I would love for readers to read the book. I would also love — I think the advice is the same as the last time that we talked, Meg, is like, to just embrace humility, and understand that our perspectives are — they’re limiting. So, when we open ourselves up to other people’s perspectives and understand that we can only know so much, that’s really important.
Meg:
I love that you said it again, because we can’t hear that enough times. That’s so important. Thank you, Jules. What about you, Meghan?
Meghan:
I like what Jules said, and that’s probably the best thing. I guess the other thing would be to, you know, give yourself grace. Give each other grace. And also, that this book is not just for parents or just for autistic people, because they’re like, there’s no binary there, right? This is this is a book for everybody, because we are so dynamic, right? I’m a teacher, and I’m a mom. Jules is a parent, she’s an autistic person, she’s an advocate. You’re a parent, you’re a provider, and I feel like the issues that we discussed, everything has some sort of overlap. And so, I guess that’s kind of what I would like to say. And everybody’s perspective is, it only enhances your own.
Meg:
I agree. Read the book, y’all. Tell us where we can find your book and your other projects online, and what you’re each working on right now.
Meghan:
So, our book is called ‘I Will Die On This Hill’… I don’t know the rest of the book’s name.
Jules:
‘Autistic Adults, Autism Parents, and the Children Who Deserve a Better World.’
Meghan:
And it’s available. It’s available preorder pretty much everywhere. Amazon, Barnes and Noble bookshop, just everywhere books are sold, and it actually releases on January the 19th. And you can find me on different social medias at @NotAnAutismMom, that’s my handle on everywhere. And my website is notanautismmom.com. And we hold monthly Zoom sessions on AAC and high-tech and low-tech if you’re interested in that. We’re really pushing that hard.
Meg:
Thank you so much, Meghan. What about you, Jules?
Jules:
You can find me at autistictyping.com. It’s newly launched and I made it myself. So, it’s very basic, but I’m proud of me for doing it. And I’m on social media as @AutisticTyping as well.
Meg:
It was such a pleasure talking to both of you today. And I very much enjoyed reading your book, and I can’t wait for other people to read it. Thank you so much for your time.
Jules & Meghan:
Thanks for having us.
[Ending music
Thanks for listening to the Two Sides of the Spectrum podcast. Visit learnplaythrive.com/podcast for show notes, a transcript of the episode, and more. And if you learned something today, please share the episode with a friend or post it on your social media pages. Join me next time, where we will keep diving deep into autism.
