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Unheard Voices’s Shawn Sullivan Talks Autism Advocacy With TPGA

Unheard Voices’s Shawn Sullivan Talks Autism Advocacy With TPGA

Our senior editor Shannon Rosa was recently on autistic podcaster Shawn Sullivan’s show Unheard Voices, to chat about what we do here at Thinking Person’s Guide to Autism (TPGA): Our passions for debunking autism misinformation, boosting neurodiversity advocacy, and fighting for disability rights. Shawn was a gracious host, and Shannon had a lot of opinions—all of which are correct. You can listen to the audio, watch the captioned video, or read the transcript below.

Content note: This discussion mentions suicidality and self-harm.
Sensory Note: Some echoing on Shannon’s audio.

Shawn Sullivan: Welcome to unheard voices. I am your host Shawn Sullivan. And today I have an honored guest, the creator of Thinking Persons Guide to Autism. Sharon, can you give us a little bit about your background? How did you get to this point here? Before we begin, I have to back up. So this is one of those rare opportunities where I’m actually really excited about my guest.

Shannon Rosa: Heh.

Shawn Sullivan: Because I had no idea that you existed until about a year ago. I stumbled across [TPGA] by accident. And I have not looked away since, because you have your site brings a fresh perspective. Because there’s a lot of those negative stereotypes around autism. And there’s a lot of things, there’s misperceptions and stuff like that. And so I think what you’re doing is frankly amazing. How did you come up with the idea of the Thinking Person’s Guide to Autism?

Shannon Rosa: First of all, only my dad calls me Sharon. My name is Shannon [friendly laugh]. I am the parent of three children who are 24, 23, and 19. My middle child is autistic with intensive support needs. And we knew he needed support when he was about one and a half, but he was formally diagnosed at age three.

I fell down a rabbit hole of really bad information, which was pretty rampant in the early aughts, the beginning of the internet- and Yahoo groups and blogs and things like that. I fell for some pretty bad information. And if you’ve read the book, NeuroTribes by Steve Silberman, that covers some of our journey, unfortunately, but I felt it was important to share it so that other people would learn from our mistakes instead of repeating them.

And the main group that I was furious with after I learned that I’d been hornswoggled were the anti-vaxxers and the cure-based autismas, like TACA, which has changed their name but was originally “Talking About Curing Autism,” and other groups that I’m not going to mention because I don’t want to Streisand them—and then other groups like Defeat Autism Now! which has changed its name to MAPS, which means the association Medical Association of pediatric specialists or something, but they’re still anti-vaxxer cure autism people under a different name, a more palatable name.

We started Thinking Person’s Guide to Autism in 2010 to combat that misinformation. And just for context, this was before the 2015 measles outbreak at Disneyland, which was the watershed event that swung the pendulum back into people realizing that, oh, we do need vaccines for public health reasons. And [vaccines] actually do work. And maybe all this scariness about autism that the media is covering and saying that there are two sides—when there never were—is dangerous. And maybe we would rather have our children have a neurological condition that we don’t understand but can certainly support, than be dead.

So, anyhow, so we started in 2010 to combat that misinformation and it was pretty brutal, we got a lot of pushback. And then less than a year into it—because just to be clear, I’m not autistic myself—and so most of the perspectives on Thinking Person’s Guide or TPGA as we shorthand it, were parent perspectives. We did have some autistic perspectives, but they were by far the minority.

And then rightfully we had autistic people reach out to us and say, you know, why are you talking about autism without fully including autistic people? At that point our co-editors at that point were Jennifer Byde Meyers, who is also a parent; Emily Willingham, who was our science editor; and Liz Dietz, who’s also a parent of a neurodivergent now-adult. We said, yeah, that’s actually not very smart.

And so we brought in Carol Greenburg, who’s still my co-editor. She is autistic, and an education consultant and the parent of another high-support autistic person who’s now a young adult. We really started focusing not just on the science, not just on the best information we could get to people so that they would know what to believe—because there’s so much competing misinformation out there—but also incorporating autistic perspectives, so people can know from the inside out why these things mattered, why it’s so dangerous to talk about autism in such negative ways because we are, as you know personally, talking about real autistic people, not about theoretical people, and we’re talking about autistic people of all ages, not just children.

That’s where we started from. We really owe a lot to a lot of people who are current and former Autistic Self Advocacy Network, ASAN staffers, who really, really helped us figure out what kind of approaches we should take and what voices we should be listening to. Because in our earlier part of incorporating autistic voices, we kind of fell for that myth of the single story which one of our contributors, Emily Page Ballou wrote about recently, meaning that some people think that if you find one autistic person, they can tell you everything there is about being autistic.

And not only is that not true, but because the autistic community is so enormous and contains so many different perspectives, not only of their specific disability profile or their race or their gender, but when they were diagnosed, what kind of supports they’d been given, what kind of co-occurring conditions they might have. And because of all that and also the wide range of personalities and experiences, there are also people who are not reliable narrators in the autistic community.

Shawn Sullivan: Oh, yeah.

Shannon Rosa: Sometimes we had to learn that the hard way, and sometimes we backed the wrong horse. But I think we’ve gotten to a point where we are more circumspect about not believing that something is true just because somebody autistic says it. As with all our other information, we want citations. I mean, not really; you can’t have that with personal experience, but we vet our people a lot more carefully, and we don’t put up with people treating other people badly.

We’ve also fine-tuned our comment policy to be clear that if people are misbehaving, we just don’t have the tolerance for it that we used to. We even removed comments entirely on our website.

Shawn Sullivan: You can’t really predict, right? And who filters that? That requires a lot of bandwidth.

Shannon Rosa: Moderation is a pain in the ass, and also there’s so much automated spam now that we found that the comment community on our website was decreasingly useful as a resource.

Shawn Sullivan: One of the things that you mentioned that I do want to circle back on, because it’s one of those things that I’ve sort of picked up on over the years, because what you said is very important, right? Like if you’ve met one person with autism, you’ve only met one person with autism.

Shannon Rosa: Mm-hmm.

Shawn Sullivan: What is your view on this sort of tokenism that you see? Because everybody’s like, Oh, you have to watch Love on the Spectrum, or you have to watch this or you have to watch that. And part of me is like, that’s not an accurate presentation or accurate portrayal of everybody on the spectrum. Like, you know that, right?

Shannon Rosa: Yeah it’s hard because on Twitter, I don’t know if you saw, there were a lot of [autistic] people talking about the fact that the TV series The Good Doctor was ending after seven seasons. And most people were just like, oh, thank God that is the most harmful, most stereotypical representation by non-autistic people, and it’s just the worst.

And then a couple people would pipe up and say, well, I actually kind of really identified with him. It’s similar to the book and the now the play, The Curious Incident of the Dog in the Nighttime. Even as a parent, when I read that book when it first came out over a decade ago, I was like, “I hate this book, it’s so stereotypical, and it’s making this person seem like they don’t have any agency, they’re so easily manipulated.” But then I have dear friends who are were like “Oh, I realized I was autistic because I read that book.” Right?  So I think even in the worst presentations, there’s usually something that can help one person.

I think it’s great to live when we live now, where there’s so much more representation of autism in the media that it’s okay that we have bad ones because there are good ones too.  It’s the same way that we now have enough autistic advocates out there that some of them are assholes and that’s just the law of averages, right? What are you going to do. There’s a recent person that I’m not going to name who was talking about how wokeness is a disease and autistic people can’t be racist because of their neurology. Like, nooooo. [Laughs.]

Shawn Sullivan: That’s not how racism works.

Shannon Rosa: I’m not going to promote bad autism representation. I am still going to dunk on The Good Doctor and I’m still going to dunk on shows like the Big Bang Theory that specifically don’t identify their very autistic protagonist as autistic because if they did, then they couldn’t make fun of them. Right? Because you can’t make fun of autistic people.

So I’m not going to stop dunking on those, but I love seeing things like the series Claws, which has an autistic secondary character, Dean. I don’t know if you’ve seen it, but but Dean is observably autistic. He’s not going to be passing any time soon, and yet he has a relationship, he’s an artist, he’s an exotic dancer, he’s got a lot going on besides just being some kind of stereotype. He’s also Black, which is shocking, because there’s been so little acknowledgement that autism expands beyond small white boys.

There’s a lot of good representation going out there. There’s increasingly more representation that is not just topically autistic, but is autistic-informed, which the people who I work with who work in autistic media creation—again, this is secondhand for me, because again, I’m not autistic—but they think the most important thing is for the material to be autistic-informed and -led, because in the case of Claws, Harold Perrineau, the actor who plays Dean, the autistic character, he’s not autistic. (A lot of people will remember him from Lost as the dad with the kid with the dog, if you were around a decade ago.)

But in his portrayal, it seems to me that he did all the work and that the writers and all the staffers did all the work to make that a more authentic representation. So I think that’s what matters, that we’re not pandering to stereotypes about what non-autistic people think autism is and that we are presenting a genuine experience, one of the many genuine experiences, so that people can understand.

We know the power of stories is enormous, and that media representations can affect people in ways they don’t even understand. When the movie Rain Man came out in the 1980s, it completely changed the landscape for autism awareness, if not understanding of autism. So all these different representations are changing autism perception in ways that are, I think, more subtle, but hopefully more pernicious and more beneficial to the autistic community in general.

Shawn Sullivan: I really appreciate that. Because it’s one of those things, as somebody on the spectrum, I’m always looking for that representation that is accurate. And one of the things that I try to do all the time is advocate for the realization that we’re all different and we’re all unique and we all have our own sort of things going on.

Now, in terms of the stuff that’s coming off from Thinking Person’s Guide to Autism, has there been any surprises over the last couple of years where you saw something come out and you thought, “Oh, we have to address this,” because it just sort of came out of left field?

Shannon Rosa: There’s a lot of things. One thing we have been working to combat recently has been the “mother warrior” swing from fighting vaccines to fighting to segregate autistic people with the highest support needs. There’s been a dedicated campaign for both “severe” and “profound”  autism by a wealthy, motivated, highly energetic group of parents who basically hate anything that autistic people say. There’s nothing too small that autistic people say that they can’t oppose. It’s just astounding.

Shawn Sullivan: That doesn’t make any sense to me.

Shannon Rosa: It doesn’t make any sense to me either, but they have this idea that autistic people with really high support needs and communication disabilities and cognitive disabilities are just not like other [autistic] people, which just goes to show how divorced they are from the reality of the autistic experience, because I don’t know a single speaking autistic person who hasn’t been rendered speechless and completely into to a puddle by environmental circumstances and overwhelm. And if you try to interact with that person, yeah.

Shawn Sullivan: Myself included.

Shannon Rosa: Yeah, I’m sorry to hear that but it’s, you know, another example. And also things like the incredibly high [content warning] suicidality rate among autistic people with and without intellectual disability, the general quality of life, the low employment rate.

People think the unemployment rate is just for everybody who doesn’t work, when no, it’s for people who are actively seeking work, right? It’s not the entire autistic population. People might think it’s about people like my own son, as he doesn’t work. But he’s not included in those stats because he’s not actively seeking employment.

The ignorance and just the fury, it’s been really frustrating—mostly because in these groups that I’m not going to name, they actively spin misinformation. They’ll say things like “Autistic people claim that autism is an identity and they’re not really disabled” and back to when we were talking about how you can find autistic assholes, you can find autistic outliers, you can find an autistic person who will say just about anything you want, who will say autism is not a disability. But they’re an outlier. They’re not representative.

But what these people will do is they will find quotes from random autistic people saying the worst possible things and then cherry-pick those to support their arguments. When if you go and you look at the Autistic Self Advocacy Network’s website and their research positions, their autism position talks about autism as a disability and having all different kinds of support levels and all kinds of co-occurring conditions.

Some of these parents have been making these arguments and getting published in major newspapers for more than a decade, and I guess the frustrating thing about it for me is that people don’t question parents of intensively disabled people. Right? Normally anybody who said these things—even in an op-ed—you would think that somebody would check their statements to see whether or not they’re legitimate. But they’ve been repeating these same spins and outright mistruths for over a decade. And the mainstream media doesn’t ever bother to check their statements because they feel SO sorry for these POOR parents.

And as a parent of a high support disabled autistic adult myself, I find this infuriating because everything these other parents are doing is going to undermine not just the quality of my son and his peers’ lives, if they’re successful—but it will turn back the clock like so many other clocks have recently been turned back on effective disability rights that have been so hard won over the past few decades.

Things like, we’re finally making some progress with home and community-based settings in terms of changing it so that people will have more access to the community, because we know that even if people aren’t living independently—which again, these parents claim that, “Autistic advocates think all autistic people should be able to live independently”—but nobody is independent. Everybody is interdependent.

Shawn Sullivan: Right!

Shannon Rosa: [Autistic advocates] want autonomy. They want people to be able to make choices. Yet you’ll see these “profound autism” parent screeds claiming that autistic people say everyone just needs AAC and independent housing to be able to live their good life. It’s just such bull***t.

These parents are all very well off, they have access to all the respite funding they need. You know, they get rest when they need it. And, I get it, I’m also a fairly well-off person and my son has a lot of respite—but today, his respite worker canceled, so he’s hanging out with my husband. I’m not saying it’s not hard because, anybody who has intensive support needs a lot of support. That’s just the reality of it. It’s not my son’s fault; I’m not blaming autism. It’s just the luck of the draw.

But these parents make it seem like they live these lives of unrelenting misery and horror when they’re the ones who are best positioned to make their children’s lives the best they could be and then set the example and start programs that could help people who don’t have their advantages. And the fact is that they’re fighting against disabled people who burn out at such extraordinary rates, generally live in poverty and/or with support workers, and really don’t have the same resources as those parents do to fight this fight.

These parents build up the neurodiversity movement, for example, as this big monolith monster that’s barreling over these “poor parents” when it’s the exact opposite; I feel like these parents are the MAGA movement of the autism and disability world. Because MAGAists are often people who are pretty well off, and if we look at who actually went to the January 6th insurrection, it was generally pretty well off middle class people, but who are being convinced that they are disadvantaged.

Shawn Sullivan: Yeah. Well, the very bottom line, they had to be able to afford a plane ticket, they had to be able to afford a hotel room, they had to be able to afford all of these other luxuries.

Shannon Rosa: Time off from work!

Shawn Sullivan: Yeah right? So a hundred percent I get what you’re coming from.

Shannon Rosa: It is really frustrating to see people who have all the advantages being convinced that they’re disadvantaged, whereas the people that they’re fighting against are the truly disadvantaged,  yet are the ones fighting for better lives for themselves and for their peers. This is probably my major frustration.

And I will say that in terms of your original question about it coming out of left field, I kind of felt, I was kind of hoping, that once people really understood that the autism-vaccine claims are nonsense—not everybody, of course, there are still some anti-vax die hards in the autism parenting community—but the mainstream media finally clocked that this was nonsense and that anti-vax misinformation was endangering lives, I thought that we would go towards better recognition of autistic acceptance and understanding and worth.

Instead we have these awful parent groups fighting against autistic advocacy. They’re small, but connected. And it’s incredibly frustrating to me as somebody who doesn’t have their resources, I don’t have their energy. I just have my site. Me and Carol Greenburg working hard.

It’s very frustrating for me to see people who should be on the side of right and rights, trying to undermine them, because they don’t like being told what to do. That’s my main frustration. Some of them are the same people who initially fell for the autism-vaccine misinformation, but underlying it all has been the desire to cure autism. They’re essentially mad about having disabled and autistic children. They thought they were guaranteed “good lives.”

Shawn Sullivan: Are we going to get to the point where we actually look at the research and we look at the funding and we’re going towards making lives better, as opposed to a cure? Do you think we’ll ever get there?

Shannon Rosa: Damn. Based on the percentages of where autism research is being directed according to the Interagency Autism Coordinating Committee, not anytime soon? But, let’s talk about things that give me hope. They did change the makeup of the Interagency Autism Coordinating Committee for the last seating. It has so many more autistic people than it ever has. It includes, Ivanova Smith, who has intellectual disability. It includes Hari Srinivasan, who is non-speaking.

Shawn Sullivan: Ivanova is one of my favorite human beings on the entire planet. But before you go too far, can we back up? 

Shannon Rosa: Ivanova’s a ball of fire for sure.

Shawn Sullivan: Can explain what that committee is? Because a lot of people aren’t going to even know.

Shannon Rosa: Yeah, sorry, I’m in the weeds. The Interagency Autism Coordinating Committee is a council that’s part of the NIH, the National Institute of Health [Correction: The Department of Health and Human Services]. It was created as part of the Autism CARES Act, which used to be the Combating Autism Act. They kind of oversee autism policy and advise; they don’t actually have a legislative or official policy implementation role. They have meetings several times a year to talk about specific autism research areas of interest.

Most of the people on the committee are scientists and researchers who work in autism. But they also have public members, and some of them are parents, some of them are researchers, and then now some of them are autistic people like Jenny Mai Phan, who is an amazing autism researcher, representing the Vietnamese autism community for the first time. And she’s also a parent. So, I mean, just seeing in Morénike Giwa Onaiwu, who’s  Nigerian American and autistic herself, also a parent of autistic kids. This is a kind of representation that was really lacking before.

Before that the only autistics I think they had were Ari Ne’eman and Scott Robertson and John Elder Robison, which don’t get me wrong was useful. Ari is a powerhouse to be sure. And John Robison is not gonna let anybody’s BS slide on his radar, but, you know, we needed more autistic representation. And now we have it, and I hope that is a precedent rather than a one-time deal.

Shawn Sullivan: One of the things that I hear all the time from folks on the spectrum, and I want to kind of circle back to something you said a little earlier, it was about this unemployment rate, because the numbers that I see out there from the CDC that was launched this last year was that if you have a degree, and you’re on the spectrum, that right now your unemployment rates like at 85%. And one of the biggest barriers that I find more often than not is this entire interview structure. Because the interview structure is built to make it so our brains can’t respond to the questions, and the questions in themselves are just horrible. The social dynamics of an interview, when it’s entirely based on social norms and eye contact and all of that other stuff. Have you heard of any successful programs that help with this?

Shannon Rosa: Yeah, there are several actually. I only wish they were implemented more. Probably the one that I would cite first is John Marble. He’s an autistic advocate who’s here in San Francisco. His company is called Pivot Diversity and that’s what he does. He helps companies figure out how to be neurodiversity-inclusive. Pivot Diversity is great.

Microsoft actually came up with a program, though it was more engineering specific and as we know,  not all autistic people are STEM people, but it was very specifically circumventing the traditional interview process. There’s also Specialisterne, and a bunch of other programs out there that are working on this. I don’t think enough companies take this seriously.

A lot of people are bummed at the way things have evolved since the pandemic, because so many people found that working at home was ideal for them and then have been forced to return to the office, which has been detrimental for a lot of people. A lot of people—again, I’m always going to go back to the research, and the research shows that not just autistic people, but a lot of workers do better when they can complete their goals on their own time, on their own schedule.

As long as tasks are project based, rather than having to be working from eight to five, usually that’s actually more productive and better for quality of life. So it works for the company, it works for the worker. It’s similar to what we know about the research showing that schools would do better if they let kids come to school later and do less homework. But, you know, they just can’t do that. Even though it can actually work out better for everybody, because most of those kids have to go to school early so their parents can get to work. But if we made work routines more flexible, then we can make schools more flexible. And then again, everybody would win. But that’s not where we’re at right now.

Shawn Sullivan: Another thing that I get from time to time, and that’s one of my gaps in information, is so if you have a parent who’s just starting this pathway towards learning that their child is neurodiverse, and they have a child that’s non-speaking, what’s a good place to start? Like, not in terms of assessment, but in terms of helping their child communicate.

Shannon Rosa: I really appreciate that. I’m going list three resources here. So the first thing is, if you have a child who’s having difficulty communicating, then you need to work first and foremost on getting a functional communication system. And this can look different for different kids.

The company AssistiveWare, which is out of Amsterdam and… just for disclosure, I do work with them sometimes. And they do actually fund TPGA a little bit, I should be clear about that. They were involved in producing This Is Not About Me, a documentary about Jordyn Zimmerman, who is an amazing non-speaking advocate. We were part of the team behind that. And so we get a tiny little bit of the profits and that helps us pay our writers. I don’t want anything to be not clear.

Shawn Sullivan: I appreciate that.

Shannon Rosa: I’ve always loved Assistiveware, I’m not promoting them because of the funding. They developed the AAC app Proloquo2Go.  They have just tons of free videos and resources on their site for parents who are just starting out to figure out AAC. Also they have more than one AAC app, including an entirely new app called  Proloquo. And these are all ways to help kids figure out how to communicate without having to produce speech. There are other ways as well.

The second org I’m going to cite is Communication First, which is an organization in Washington, DC that supports nonspeakers or people with communication disabilities of all disabilities, not just autism. They have really good resources on a lot of different ways of learning to communicate.

Third, I think that everybody should get a copy of Tiffany Hammond’s book, A Day With No Words, which is a picture book about a young autistic child and his mom as they go through his day with him using AAC. It’s an absolutely gorgeous picture book. And then Tiffany Hammond herself, she’s autistic, and her two children are autistic. And her site is called Fidgets and Fries. Although she recently said that she’s not going to be writing about her son’s experience as much, as it’s his to tell. But as an autistic person herself, and as a parent, she still has plenty to say.

So those are the three resources I would recommend: Assistiveware, Communication First, and then Tiffany Hammond at Fidgets and Fries.

Shawn Sullivan: Thank you so much. 

Shannon Rosa:  Sure. And then of course come to us. You can always come to our Facebook page or email us or text us via Twitter or BlueSky. We do a lot of community queries. And if the questions are intensive enough, we’ll actually do an article.

Shawn Sullivan: And I also saw on your website that you have autism organizations that you recommend and autism organizations that you don’t recommend. I don’t want to go out and call out the ones that you don’t recommend because I don’t want any you to receive any feedback because of this. However, how do you approach organizations that you do or don’t recommend? Is there a criteria involved?

Shannon Rosa: Yep, that’s what the article is about. The article lists the criteria we use. The main criteria is that the org is autistic-informed, autistic-led—the irony being that I know that I myself am not autistic. But the majority of our authors are autistic. I consider myself more of a mouthpiece, not the authority, in communicating autism information.

But the main idea is that autism orgs need to be autistic-informed. Just look and see if they oppose autistic advocacy, like specifically if they dislike the neurodiversity movement, which is just the silliest thing. See if they want to cure autism, if they are hawking supplements for autism, if they talk about special diets for autism, if they talk about ABA therapy as being crucial, being necessary. For those who aren’t familiar with applied behavioral analysis, the goal is to condition autistic behaviors out of your child rather than teach your child to thrive.

And I’m sure any ABA therapist listening to this will probably feel aggrieved, and I am sorry, but you are participating in a system that is harmful to autistic people, no matter what you’ve been taught. But there are ways to work from within the system. So try to learn from autistic people about ways to do that and stay strong and look at your autistic clients first and consider their well being first, is what I would say about that.

Also, you have to be careful about organizations that are led by autistic people who like to differentiate themselves from people like my son. We have an article on this on our site by Fergus Murray, a wonderful autistic advocate from Scotland, talking about what they describe as Aspie Supremacists. So they are people who don’t want be associated with people with higher support needs or intellectual disability. Aspie supremacists tend to dislike being termed “disabled.”

I have a lot of empathy for people in this situation, given that the DSM has changed so much. Also I’m in my 50s, so for people my age who didn’t even have access to an autism diagnosis growing up and were treated badly their entire lives—and I’m sure you know nothing about that, Shawn.

Shawn Sullivan: Right. Story of my life.

Shannon Rosa: There are some people who were told, and whose self-worth is dependent upon not being disabled because they are smart and special, and that’s what makes them have value. So I can see why this is really hard for some people. But the solution for that is not to align with other people who think the same way, but to connect with a wider autism community so you can realize that the things that are hard for you are okay and they are not uncommon at all. My heart just breaks every time I talk to a young autistic person who has never had any connection to the autistic community.

Shawn Sullivan: Oh man.

Shannon Rosa: Like, oh my G-d, your people are waiting for you!—but not the Aspie supremacists. Watch out for these people. Know that you are full and worthy and you don’t have to be a performing seal in order to have worth. You are enough, just as you are. And the things that are hard for you, it’s okay for those to be hard. You need support, not criticism. You need understanding, not condemnation. And you need to connect with the people who understand what you’re going through, because it sounds like there’s nobody in your life who actually really gets that.

Shawn Sullivan:  I would like to expand on that for just a second, because that is the part that changed my life forever. 

Shannon Rosa: Really?

Shawn Sullivan: It was the first support group that I went to and I met other folks on the on the autism spectrum, and I’ll never forget that first time I experienced, “Oh wait I’m not the only one who thinks that way,” or “Oh wait, you mean there are other people who think that?”

The life changing aspect of meeting other people on the spectrum and being able to communicate is why I run two support groups now. Because, for me, the most important aspect is getting to connect with other people in your community

And you’re absolutely right. That doesn’t mean you assimilate with other people who are just like you and have your same quirks on the spectrum. You have to go out there and meet folks like Ivanova Smith. You have to go out there and you have to talk to these people, and get an idea of what they’re going through. Because even though they may have more support needs, or they may have higher levels of needs, at a fundamental level, we’re all experiencing the same thing. It’s just to a different or varying degrees, right? 

Shannon Rosa: Mm-hmm.

Shawn Sullivan: We all have sensory issues. That’s just one of those key components. But some people experience sensory issues way more egregiously than others. And that’s okay, too. So I’m so glad you said that because, that’s what I recommend to everybody: Get out there and meet people in your community. It makes so much difference. So my heart goes out when you say that you meet people that have not experienced that yet, because you’re absolutely right.

Another thing I really wanted to touch on is your mission, because I think it’s amazing. Because you’re right, society has this one picture of folks on the spectrum. So an organization like yours that takes a step back and actually thinks about things before they put it out there, that to me is just so refreshing.

Shannon Rosa:  Again, we’re highly, highly informed by autistic advocacy that comes from organizations like the Autistic Self Advocacy Network and autistic writers like Max Sparrow and Emily Paige Ballou and Ann Borden. We just can’t do what we do without having these different perspectives.

We’re working on a piece right now that how, you know, for some people who just still resent the terms, you know high support needs and low support needs, because—like we talked about initially—just because you technically have low support needs most of your day doesn’t mean you can’t crater and, and have the highest support needs possible when you’re in a low spot. And that’s valid. We have to talk about these things.

We have another good article called What Do We Mean By Levels of Autism by English writer Ann Memmott that talks about what nonsense “levels” are and how everything is dependent on environment and your health and the people around you and just what kind of energy you have that day.

Shawn Sullivan: Who came up with this concept of levels, do you know?

Shannon Rosa: I mean, it’s part of the DSM criteria for autism.

Shawn Sullivan: I don’t remember or recall levels being a part of the conversation up until fairly recently.

Shannon Rosa: There were levels kind of in the DSM-4, which is the previous version, but then there was also Asperger’s. And since Asperger’s got folded into the complete diagnosis of autism in I think 2013, since then autism includes people formerly diagnosed with Asperger’s. And so, people who don’t understand the complexity or need of criteria, or who have to fill in check boxes use the term “high functioning.” And people have said that, “Well, that’s not really very useful. How about low support needs instead? But again, that doesn’t always make sense.

As our societal understanding of autism increases, more people will understand that just because somebody can do something at one hour on a certain day doesn’t mean that’s what they’re always going to be able to do. Certain people will maybe be able to function and work, but then when they get home, will be completely useless and need to hide under the desk for three hours, or the rest of the day.  We need to work a lot harder as a society to understand just how complex autism is and that it’s not this monolithic entity, even within a single person, it’s constantly fluctuating, and that’s the nature of being autistic, not even just having the sensory issues or communication issues or the diagnostic criteria about reliance on routine and things like that. It’s about the dynamism of being autistic.I think that’s probably the most important thing to get across to people.

Shawn Sullivan: I appreciate that. And something else that’s happening a lot in Oregon that will probably knock your socks off. We have evaluators who actually still think that you cannot have a co diagnosis of autism at ADHD.

Shannon Rosa: WOW, okay. [Laughs. A lot.]

Shawn Sullivan: I just wanted somebody else’s perspective because I’m sitting up here doing the same kind of thing [laughing] so is that something you guys are hearing in California as well or have you heard of that before?

Shannon Rosa: No, I have not heard that through any formal or informal channels. That’s really funny. Obviously, not all autistic people have ADHD, but oh, yeah, it’s a co-occurring condition to be real. And actually, what is more likely to happen than not is that autistic people will be diagnosed with ADHD and not get their autism diagnosis. That’s more likely to happen when they actually have both.

Shawn Sullivan: And what are the ramifications of that? Because for me, like if I were to have been going through that whole thing and then get my diagnosis, and they would have told me I had ADHD and not autism, I don’t know how I would react. Like, “What are you talking about? That doesn’t make any sense.” But but I see this happening way more with women than with men. And it’s one of those things where I’m just like, I don’t understand. I don’t understand!

Shannon Rosa: Well, again, we’re still so behind in our diagnostic criteria being inclusive of everybody who qualifies as being autistic. So that’s the problem. I mean, it’s gotten better, but it’s still not anywhere near where it needs to be. And so that’s why we’ll continue to have people self-identifying because at least you can get community support that way, even if you can’t get official supports.

The thing about having ADHD is nobody’s going to give you sensory accommodations for an ADHD diagnosis, right?

Shawn Sullivan: Right, 100%

Shannon Rosa: That’s not really helpful. Nobody’s going to cut you any slack for having a meltdown because you have ADHD—that’s just supposed to mean that you’re hyper all the time and you can’t focus! So why are you in the corner and not able to talk?

Shawn Sullivan: Right, and the reality is, it’s a sensory processing thing, and it’s not anything else. Like, there are times where, like, sensory issues are just, you know… I was talking to a gentleman by the name of Matt Sloan for my first podcast. And one of the things that he talked about that I totally had no idea was about when you’re in a grocery store, and they have fluorescent lighting. The fluorescent lighting actually causes your pupils to expand and retract.

And so if they use specific kinds of fluorescent lighting, that’s why you can get into sensory overload because your eyes are working hard enough as it is. But then you’re like, “Why am I tired, halfway through a grocery shop?” And well, now I understand, because we have this huge prefrontal cortex. And because I have this prefrontal cortex, and my eyes are working, it just shuts down other parts of my brain.

Shannon Rosa: Yep. Yeah.

The thing is also like if a lot of autistic people I know can be sarcastic as hell but don’t necessarily clock sarcasm when it’s directed at them, and those kind of social snafus are another thing that you’re not going to get any slack for with an ADHD diagnosis. There’s so many things. It’s just really not useful.

Shawn Sullivan: Another thing that I saw on your site recently was about the autistic care workers. It’s one of those things that I wanna touch base on because for me, the direct support workers or DSPs as they call them in Oregon, they are superheroes. And they don’t get paid enough. They don’t get their credit and the respect that they deserve. Do you see a time or a situation where that would actually change? 

Because I know that’s like what’s needed. Because if you’re talking about stability, and you’re talking about routine routine routine, but yet you’re changing direct support workers every two months, because they can’t afford to do that work, it seems like it’s a cycle that’s doomed for failure.

Shannon Rosa: They were trying to include increased pay for workers. I’m so sorry, I’m not a policy wonk; I forget which federal bill it was, but that was actually supposed to be part of a federal bill. And it got carved out as concessions to the Republicans*. Sorry, I’m just going to be openly partisan here. Because the Republicans are not on the side of disabled people. I’m sorry, they’re just not.

*Note: while zero Republican senators supported Build Back Better, it was in fact torpedoed by  Senator Joe Manchin, who is nominally but not functionally a Democrat.

Shawn Sullivan: Please, you’re fine.

Shannon Rosa: Everybody knows that we need more pay, that [direct support workers] deserve more pay and people are working on it. The Autistic Self Advocacy Network has always been behind it. All the other disability organizations have always been behind it. Like the Disability Rights and Education Defense Fund, DREDF. But other people don’t give a shit.  If you’re not part of the disability community, it’s not your problem. Even though, as we know, most everybody is statistically likely to become disabled at some point in their life if they live long enough, right? It’s actually your problem too. You just don’t think about it. I wish it was better.

Since you brought up that the subject was autistic care workers, I think it’s really interesting to see how many autistic and disabled people actually do opt to become care workers because they don’t want people to go through the same experiences that they did; they would want somebody who actually knows what they’re doing to have their back.

Going back to those awful “profound autism” people, they always say things like, “I would like to see YOU [autistic person] try and take care of my child for a day!” And it’s just so funny, like, do you know how many autistic people do that voluntarily? Because of awful people like you, they’re trying to do interference so that your children’s lives aren’t so horrible. But you go ahead and say whatever you want to say, because you refuse to listen to people who know what they’re talking about and have lived experience. Sorry, that’s just, I can go on.

Shawn Sullivan: You get one or the other, right? You get those parents that are amazing, that do everything in their power to get their children out of the house, get them the supports they need. And then you have the other parents that sort of talk like their child is just a burden. Like everything is this negative, that negative, this negative, this negative. And if that’s the conversation you’re modeling for your child, that’s kind of mean. Like, ah,

Shannon Rosa: Yeah, it’s horrible. But what I’m more worried about the parents in the middle who are looking for information and who find these fonts of negativity as their role models. The parents, like we talked about with the autistic community, the parents are looking for community too. That was part of my problem initially, when I fell for the wrong information; it was because I was flailing and I was looking for any kind of supports because, you know, the thing about autism is that there’s no consistent support. There’s no consistent path.

Shawn Sullivan: No.

Shannon Rosa: So it can be very, very easy to fall for the wrong information, if people support you—and these communities can be very, very supportive. And people tend to feel disadvantaged because they are disadvantaged. The system literally is working against us all. So if you find solidarity with the wrong people, that’s really dangerous for you and your kids. That’s why I try to speak out as much as I can.

Shawn Sullivan: There was an article that was maybe a year and a half old, that was called How the World Was Not Built for Us. It was from a woman’s perspective who brought her autistic child to an event, and how the event was labeled as a certain thing. But then when you get there, you realize all the activities are not good or conducive for neurodiversity, the way the entire thing is structured. Why is it important for people to understand that if you’re organizing an activity for people or supporting people on the spectrum to make sure that their event is accessible for people on the spectrum?

Shannon Rosa: Because you want people who don’t usually get to go out to be able to go out. Like you said, most places aren’t built for us. But the thing is, people seem to view accessibility as a once-and-done thing when it’s actually a process. And part of that is because of the prevalence of what are called competing access needs. For instance, in my very own house, I have two people who are highly sensitive to noise and then one person who makes a lot of noise. And so if you had those, all those people together at an event, it wouldn’t work.

This means there’s really, truly no way to make something one hundred percent accessible, but you can work with the communities that you’re trying to support to make it as accessible as possible. And you can do things like making sure people have noise canceling headphones, if that works for them. There needs to be an understanding that accessibility is a process and that it might not work well the first time.

But too many people descend and think they’re guardian angels and they’ll say, “Look, I gave you this thing, it’s accessible.” But they didn’t talk to anybody about it from the community. Like, I’m glad you read that article about dimming the lights, but that’s not going to work for everybody. You have to be informed by the community that you think you’re serving. And good intentions are insufficient in accessibility.

Shawn Sullivan: Another thing that comes up from time to time in terms of job accommodations that surprises me is that the conversation is always like literally about “When is this going to end?” The idea that accommodations for people on the spectrum is going to be temporary, versus “No, this is not a two week thing.” There’s this misconception out there like it’s all going to go away overnight. How do you combat that?

Shannon Rosa: I wish I had a good answer for you. I wish people would take accommodations seriously. And again, as a process. It’s really affecting the mental and physical and economic health of autistic people not to be accommodated. And the thing is that so frustrating is, autistic workers, as a bloc, are so productive and so dedicated.

Shawn Sullivan: I know, right?

Shannon Rosa: They can be the best workers, but you have to set them up to succeed. And if you don’t do that, then they’re going to burn out. And that’s on you, because you didn’t make the effort to make sure that they had the right working environment.

Shawn Sullivan: I’ve had both. I’ve had a very diverse employment history because my autism gets in the way. But I’ve been at the same job now for six years, and I’m respected, I have the support needs that I need, and I’m actually successful. It’s a huge difference.

Shannon Rosa: I’m glad to hear that.

Shawn Sullivan: The one thing I wish for everybody is that they could be authentically autistic at work. That would be an amazing goal to achieve, if we could ever get there.

Shannon Rosa: And that could even be  working at home, and communicating via email. We saw that this works. The pandemic proved it. So.

Shawn Sullivan: Then the other question that I would like to ask if you would. With your children and  their path, can you kind of talk about what role an occupational therapist played in that, because one thing I hear time and time again is, “You need to get an occupational therapist, you need to get an occupational therapist.” And I’m like, great. But what do you do once you get an occupation therapist? What am I supposed to be looking for? What’s the conversation that I’m supposed to be having?

Shannon Rosa: An occupational therapist or a physical therapist. And I would say that this is important because, first of all, a lot of autistic people, and their siblings, have a tendency to have Ehlers-Danlos syndrome or hypermobility syndrome, which is where your joints are just kind of all messed up, though there’s a lot of variation. But the joint thing is crucial. I wish that was part of the autism screening [for people diagnosed in adolescence or later], because we have so many people who have it. We have so many people who hit puberty, and then their bodies really get messed up, and nobody believes that there’s anything wrong with them. PE coaches will torture them. It’s more common in women And so it’s more common in women and autistic people who are assigned female at birth, but people need to get screened for that.

But in general, autistic people tend to have motor issues and specific area weaknesses. And a lot of the kinds exercises and things even as young kids that kids are expected to do, like going to trampoline parks if they have if they don’t have mobility issues, or hiking and stuff like that. If you have specific weaknesses or hypermobility these things can actually mess up your body, and it’s better to know what’s going on.

And if you have motor issues with things like writing then it’s better to teach people to either type or use a spelling system that doesn’t require them to hold a stylus, or get them Velcro shoes and slip-on shoes instead of forcing them to learn to tie their shoes. These things are really important because there are so many things people think that everybody should be able to do physically that are not actually necessary. And if your disability makes it harder, then it’s good to have documentation about that. So you can just tell people, “Look, this isn’t going to happen. So we’re doing this instead.”

Shawn Sullivan: Yeah, because one of the things that I didn’t know I had for the longest time was dyspraxia. I didn’t even know that was a term. Like, what is this thing?

Shannon Rosa: Yeah, very common [in autism].

Shawn Sullivan: Well, we’ve been at it for an hour. I can’t thank you enough. I really enjoyed our conversation today. 

Shannon Rosa: It’s my pleasure. I enjoyed it as well.

Shawn Sullivan: Is there anything that you would like to cover before we wrap things up?

Shannon Rosa: You can find our website at www.ThinkingAutismGuide.com. We are on Facebook. We have a huge community there and on Twitter—which, I’m not going to concede to the new name—and also on Blue Sky.

Shawn Sullivan: I don’t blame you. Well, Shannon, thank you so much. I really appreciate your time today. Let’s do this again. 

Shannon Rosa: Yeah, thank you for inviting me, Shawn, and sure, absolutely. Have a good one.

Shawn Sullivan: You too.

 

Screenshot of Shannon Rosa and Shawn Sullivan, two white people wearing glasses, in a split-screen video chat. A caption at the bottom of the screen reads, "However, how do you approach organizations that you do or don't recommend?"
Shannon Rosa talking with Shawn Sullivan of Unheard Voices

 

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