Neurodiversity powers activate! Our editors Carol Greenburg and Shannon Rosa are on the latest episode of Barry Prizant’s and Dave Finch’s Uniquely Human podcast. We discuss our own personal histories, including Carols’ realization that she was autistic after her son’s diagnosis, plus Shannon’s unfortunate early hoodwinking by and furious rejection of autism misinformation—the latter having led to the creation of Thinking Person’s Guide to Autism. We also talk about media bias in autism topics, and how journalists and outlets can do better by autistic people. Podcast audio and transcript included.
Thinking Person’s Guide to Autism: A Discussion with Shannon Des Roche Rosa and Carol Ann Greenburg
Barry: Hi, I’m Dr. Barry Prizant, clinical scholar, researcher, and consultant on autism and neurodiversity, and a Brooklyn boy raised in the big city.
Dave: Hi, I’m Dave, and I’m none of those things, and I grew up on a farm in Illinois. But, being on the spectrum myself, I have a lot of personal insight to lend.
Barry: And this is Uniquely Human: The Podcast, a show that illuminates and celebrates autism and neurodiversity. Today, we are so pleased to have two very special guests on Uniquely Human: The Podcast.
Shannon Rosa, who is the founder of Thinking Person’s Guide to Autism, and Carol Greenburg, who works a great deal in editing and helping to make Thinking Person’s Guide the wonderful resource that it is and has been for many years. So Shannon and Carol, thank you for being on!
Carol: Thank you for having us!
Shannon: Thank you for having us, Carol is just a straight-up editor. She’s my partner in all things at TPGA.
Barry: Great, thank you.
Shannon: Just to clarify, she isn’t help, she’s fully [laughs] invested.
Barry: A full partner, that’s great. Alright, so we have two partnerships here that are both full partnerships, and that’s fantastic. So, you each have very interesting and unique journeys that got you where you are today, so why don’t we begin first with Shannon, and tell us a little bit about what you do, why you do it, and what your journey was to get here?
Shannon: Sure, well thanks again for having me on. So, for those who don’t know me my name is Shannon Rosa, I live in California, and I am the parent of three children, who are all adults, and all neurodivergent. My middle child is 23, and he is autistic and nonspeaking with intellectual disability as far as we know. He also has extensive support needs. He was diagnosed autistic at around age 3, but we knew before then that something was up due to various professionals alerting us.
I dove into writing about my [autism and parenting] journey starting in 2003, I had a mommy blog during that era, and unfortunately I fell pretty hard for a lot of the misinformation about what causes autism, like the vaccine myth of causation. I fell for alternative “cure” options, because there was not a whole lot of really great information to counter that information, because again, the blogs had just exploded at that time, the media was treating autism unquestioningly as an epidemic, without any irony attached to that term, and the mainstream media had not caught up on making sure that the science was forefronted. You can read a little more about that journey in a book that came about around the same time as your own book, Barry, called NeuroTribes.
Eventually and thanks in large part to very patient autistic and science friends and colleagues, I came to realize that my ways were very much in error and then of course I was furious, so that is part of why we started TPGA: to provide a one-stop shop for people who wanted good autism information that was vetted and screened, so that they wouldn’t repeat the same mistakes I made.
We started TPGA in 2010, and then after a few months realized that we couldn’t have a site about autism without an autistic person, and Carol very graciously agreed to be an editor. She has been our lodestar ever since. We now primarily feature autistic voices, but when I say that I mean a wide variety including non-speakers to people who are working autism researchers doing cutting edge autism research.
It has been 14 years and we are still working on getting the best information that we can and talking to the people who have the best autism information: What it’s like to be a non-speaker, what is the state of vaccine science right now, why is it that people believe charlatans like RFK Jr. when there is nothing supporting his statements, more importantly, why is it that we need to reject the false idea that autism is an epidemic, which unfortunately still tends to happen in the media.
Like the mission of your book and podcast, TPGA means autism is about real people, with real feelings, who in many cases are very much aware of the conversation that’s going on, but too often it’s going on without autistic people themselves being involved. What we’re doing now is we’re trying to have the most comprehensive conversation possible including autistic people, parents, and professionals, and in many cases people like Carol who are all three.
Barry: If I could just interject Shannon, kind of, throw a kudo your way, and that is that many parents unfortunately invest in misinformation, who invest in the cure, the vaccines, very often lash back at autistic people who are giving very different messages, and you didn’t, you embraced what you heard even though it was contrary to some decisions you made.
Shannon: Well I did at first, I mean it was a journey. I find that people rarely have epiphanies when they’re confronted on deeply held beliefs about something that is really distressing and has got them on almost kind of a campaign. And that is how I was feeling about my son [after his autism diagnosis], I was convinced initially that I could cure him, because that was what people had told me, and I didn’t want to hear anything different.
But that’s part of why I’m so grateful to people like you and this podcast that again represents the humanistic side of autism, because it makes me so angry when I tell people that my son is autistic, and then they make that sad puppy face. He’s the greatest guy ever, and we have a good life. I’m not saying it’s always easy, but we want to make it easier for people to have the kinds of lives they and their autistic loves one deserve, and I think too often the narrative of doom and gloom makes it so people don’t even try, or they don’t even know that they can try. I find all that really depressing, and it doesn’t have to be that way.
Dave: Exactly. And you know, the gloom and doom piece of this is something that’s fascinated me the most about the things I personally have published, since I write personal narratives about my experience with it, and usually, yeah, making fun of myself in these essays because it’s easy to do, but what struck me when I started publishing things is that how many people reached out and said this is so antithetical to the gloom and doom, that’s the exact phrase they used, any time we look into autism and relationships or autism in the workplace or in the classroom, and I know Barry you’ve had the exact same response: For every 10 people who’ve said that to me there’s probably a thousand who’ve said that to you, from Uniquely Human.
Barry: So Carol, if you could share a little bit about your story and, full disclosure, I’d never met you before, but I just found out the other day that you know Dave going back a number of years, and I was excited to hear that.
Carol: I think we know each other through John Elder Robison?
Dave: That’s exactly right. And right after my book was published in 2012, you were one of the very first tremendous supporters of everything I was doing, and you were a strong wind in my sails, especially right at the beginning.
Carol: So glad! It was very very rare, at that time when your book was published, to find other autistic parents of autistic kids. You know, I did find people like Shannon every so often, but they are rare, people who have an attitude of autism acceptance in parenting their kids, and those were people I could definitely have conversations with.
But people who were actually autistic and had autistic kids, it was John, me, a few other people, and a lot of the kids, and this is one thing I wanted to bring up, perhaps later, in more detail, people made the assumption that because I speak very fluently, that my son must have what was then called “Aspergers.” As that’s what I was initially diagnosed with—about 2-3 years after his diagnosis. He does not speak, for the most part; I describe him as a partial speaker, or mostly non-speaking depending on the context, and we present completely differently.
I also come from a very autistic family, my father was autistic. And one of the things that really helped me get through all the negativity and the doom and gloom surrounding my childhood—because my late brother was clearly autistic as well, although we had no diagnosis such as Aspergers at the time—so there was clearly something going on with the whole family, except for my poor mom who had to deal with all of us.
But there was something going on in my family and I got a lot of the doom and gloom when I would say “Yes, my son is autistic” and I would hear “I’m sorry,” and I’d say “Why, what’d you do, did you break something?” or “He’s not [sorry,] and neither am I!” And that really makes people uncomfortable, they really did expect me to go into the woe-is-me thing and I won’t, I won’t, you don’t get to be sorry for me for having a kid like mine, he’s fantastic, take that somewhere else.
But yeah, my son is mostly nonspeaking, and the attitude I got was “Oh yeah, he must have Asperger’s like you, he must speak like you,” Nope. My father who was absolutely convinced, and I think rightly so, that he grew up autistic in the 1930s, has what used to be called selective mutism and is now called situational mutism, and I realized in his final years, when he was still able to speak some, that actually even though he’d allegedly “gotten over” his situational mutism, it had actually been with him his whole life.
To some degree or another, and I even asked [my father] that, I said sometimes when you leave the room it’s because you hate small talk, and I get that, but sometimes when you leave the room it’s just because you can’t come up with words at that point. And your situational mutism may be kicking in again. And he said, “You’re right.” He also felt that the same mechanism, it was a different trigger because he’d had a series of strokes which deprived him of speech in his final years, but one of our last conversations, the same mechanism that prevents Arren, my son, from speaking was the same mechanism that was preventing his ongoing aphasia, apraxia, the things that robbed him of his speech.
The words were in there, the thoughts were in there, but he couldn’t get them out from his brain and out of his mouth. He felt the same way about Arren, and I think he was right. There’s a lot that looks different but is similar in my family history of autism. It’s helpful to me to have had an autistic dad, and I think it’s usually helpful to Arren to have an autistic mom.
Dave: Absolutely, I mean, it makes it- an enormous difference when you can relate to your kid or your parent, either direction, around something where very few other people are able to relate.
Carol: Yeah.
Barry: And Dave, how many times have we heard that from so many of our autistic guests who have autistic family members or children, feeling that they have a special insight and a trust with their kids because they have insight into their experiences?
Carol: Well as long as they accept that they’re autistic.
Dave: Yes.
Carol: That’s where the problems come in. I think there are a lot of autistic parents who don’t know that they’re autistic. Who have autistic kids, and think it’s a tragedy, and think they couldn’t possibly be autistic because their kids can’t talk and they can. And that’s where a lot of the misconceptions come in, that’s where a lot of people who really would benefit from getting evaluated don’t get evaluated because “It couldn’t be.”
Barry: Yes. Do you see that as a consequence of getting rid of the Aspergers sort of diagnostic path, where there are some people who would say, like, “Well if that’s what autism looks like, and feels like, that’s not what I’m experiencing” but with Asperger’s, that made a lot of sense, so I’ll pursue that diagnosis.
Carol: Not really, because there’s always been a group of parents who we still deal with who may be thinking people, but sometimes they can be thoughtless people, who say they aren’t autistic because they aren’t like their five year old child. Well I’m a 60 year old woman, I should hope I”m not like a five year old child. I’ve got a lot of things going on in my adult life that I didn’t have going on in my childhood, a lot of abilities I didn’t have back then, or a lot of things that I masked back then, a lot of problems that I masked back then since that was the only option.
I now put as much effort now into unmasking as I put into masking. So I don’t think it’s about Asperger’s, or the designation of Asperger’s going away, I think it’s about the ongoing bigotry, quite frankly, that has always been there, against autistic people. And the ongoing—this is rather harsh and frank I’m afraid—but there are a lot of parents who feel so sorry for themselves that their kids turned out to be autistic, or turned out in a way they didn’t expect, that they want all the attention to be on their hardship in raising an autistic child.
Rather than on the real difficulty in my experience, which is getting services that are promised and are legally necessary for your kid’s education, other supports, and getting access to services that you should have easy access to and having almost no access to. That’s the real frustration, I think, for being the parent of an autistic kid, and even now that my son is an adult and out of the school system, I’m getting him adult services, and I’m advocating for him for that, and that’s hard too.
But I think that people still have deeply, deeply entrenched—and if you read NeuroTribes you’ll see why, when you see the history of autism, and how it’s been thought of, the historiography of autism—then you start to see why people still hang on to this notion of “You could not possibly be autistic because you have a sense of humor, or because you show empathy, or because you are connected, you’re married, you have a kid, none of those things are possible for someone who’s really autistic.”
Barry: All the myths and the misconceptions. So since what brings you together in your work of course is the incredible resource that you have developed and are sharing with the world, TPGA, it was funny, Carol when you mentioned the word “thoughtless” I thought “You don’t call it the Thoughtless Person’s Guide,” it’s the Thinking Person’s Guide. So if you could share, and maybe we’ll start with Shannon, the mission, and what are both some of the achievements as well as the surprises you think that have emerged from TPGA, because truly in my opinion it was one of the very very first progressive resources that’s really pushed back against the myths and really amplified the voices of autistic people.
Shannon: We’ve gotten some pushback about the title, with people saying, “Well what if I’m not a thinking person?” and our response is that anybody can be a thinking person if they have access to the right information, which is what we try to provide.
It’s been interesting, I shared a little bit about my journey initially, but I think one of the things that’s been the most surprising to me is kind of the need for us to persist because of the generational memory loss that occurs. You think that once you’ve established something like, for instance, in 2015 when there was the measles outbreak and the media realized “Oh, maybe it’s a bad thing that we’re both sides-ing the autism vaccine myth” and everybody finally realized that maybe we really should vaccinate our kids, that maybe having our children die of preventable disease is something we don’t want and maybe we need to work harder to understand what autism is instead of being afraid of it, although that last one is really more my wish than the way that the mainstream media is covering it.
But now we’re seeing, especially with COVID and the anti-science narrative coming back I’ve been seeing parents of younger autistic kids saying almost the exact same things that that blowhard Jenny McCarthy would say, which is, “Oh, my child had the vaccine and a light went out in his eyes and then suddenly I have this autistic child, it’s the vaccines!” I’m like, what the f***—sorry. Pardon me, I grew up with three brothers so I don’t always have the most genteel language.
Dave: You cannot offend me [laughs]. Keep it up.
Shannon: OK, well I’m thinking more of your gentle listeners.
Barry: And Carol and I are from Brooklyn, so you can’t offend us.
Shannon: [laughs]
Carol: That’s what we hear in one day.
Shannon: So, that’s the thing that surprises me is the fact that, you think you get the information out there and you’re done, but you’re not. You have to persist.
And the other thing that constantly surprises me, although it shouldn’t, is related to what you were talking about about the parents who don’t understand that they’re autistic, [even though] they have an autistic child. And I think that has to do with the fact that the portrayals of autism in the media—whether it’s fictional or it’s in journalism, tend to be very narrow. Children like mine and Carol’s tend to be presented as these horror stories and these worst-case scenarios, and in some cases—although this is changing a little bit, the media will even sympathize with parents who harm their high-support children because of the “burden.” And then you have the geniuses, the Good Doctor, or the Big Bang Theory, or you have the manic pixie dream girls, like you have in Extraordinary Attorney Woo. And most autistic people are [actually] somewhere in between, certainly in my experience.
But’s just so frustrating because these parents, I see them all the time, these families where one child has been diagnosed autistic, and you see the rest of their children, they’re all obviously autistic, in different ways, and the parents not only are not aware, or the parents themselves are autistic and are not aware or in denial. And, like Carol said, none of these people are getting any support, and there are people who go through all of teenagehood, all of adulthood, sometimes their entire lives without getting a diagnosis or support. And even the most awful anti-neurodiversity autistic parents, they deserve supports, anyone who has support needs deserves to get what they need,
And wouldn’t the parents in these families be happier if they took the time to understand what being autistic means in the much broader and more complex sense? But until we have the media covering [autism] in a way that actually represents this complexity, then we are going to have families and parents persist in remaining undiagnosed and miserable.
That’s aside entirely from what Carol talked about, which is that you can’t have a good life without getting the supports you need that are legally entitled to, as is anybody who has those needs. And just to continue on this, I continue to be really distressed about the way that autism gets represented, even in progressive media. I think it’s really rare, although it’s getting a little bit better in some outlets, but it’s still so rare for autism not to be described in negative or even pitying terms—and nobody who is treated that way is going to be able to flourish.
Barry: If I could add another dimension to this in terms of how autism is portrayed in the media, it’s, again you just have the extremes and not the accurate kind of nuance in between and what I mean by that is either an autistic person is fixed in time and they will always be that way, or there’s a miracle cure and breakthrough, and all of a sudden that person who was thought of as helpless is unbelievably doing well.
So just the other day we had a nonspeaking young man who works with Elizabeth Fossler and what we emphasized is yes, he’s nonspeaking, and he does communicate by spelling, but it’s been a very long, hard road to get there. It’s a journey, and one thing we’ve spoken about on this podcast is the parent retreat weekend that we’ve been doing for 25 years, so I have the incredible privilege to watch families on the journey, some of them year by year, some of them over 30 years, and you realize it’s not just a human being that’s fixed, cast in concrete, it’s not overnight something happened that the autism was, excuse the word, cured or recovered, but it’s the whole issue of professionals understanding it’s a journey for the family, and then we talk about supports and how the supports need to change over time.
Shannon: Well, I would also say that in regards to autism not being static, and I’d ask our colleagues in this chat to address this, possibly Carol, the thing that really frustrates me is this conception of parents of autistic people with high support needs telling people who communicate on screen that they could “never understand what it’s like to be in my child’s shoes,” when in many cases a lot of people who are able to write on screen still have really high support needs, were nonspeaking as children, and then their ability to function in their life depends on the stresses in their lives, and the fact is that, and Carol you can tell me, I don’t know a single autistic person who isn’t capable of lapsing into a nonspeaking state if the stressors in their life get severe enough. Well maybe not Carol, I’m just laughing because Carol is my favorite Chatty Chatterson.
Carol, laughing: Yeah, there’s a word for it that, there’s the quiet kind of autistic and then there’s the kind that never shuts up and I’m the one who never shuts up. But I do lapse into that state, I do lose language, I lost it in a medical setting once, and all kinds of wackiness ensued, so I do bring communication cards with me, stick-man communication cards to show people when I lose language, I have Prologue2Go language app on my phone so that I can talk, it can talk for me when I can’t talk.
So it has happened, what is really amazing about that is that I will get to know people really well, they will believe me or say they believe me when I say I’m autistic, but then when they actually experience me losing language in a certain situation they freak out. Like, wow you’re really autistic? Yeah I’ve been telling you that. I think we’ve covered that topic.
Shannon: Yeah, I think the understanding of what it’s like to support an autistic person from a non-autistic perspective—which is what I bring—is you have to really do your best to believe the person you’re with when they tell you, however they tell you, what they need and sometimes that involves a lot of guesswork, specially with our kids who are mostly nonspeaking.
We’ve tried many communication systems with our son and he is not interested, as far as he’s concerned he can get what he needs for the most part. He can speak some words, and he can definitely go and get what he needs with physical objects, but when he’s in distress it’s incredibly frustrating, and it’s just the worst feeling in the world to see somebody in as much distress as he can be in and not be able to help him, and in part that’s because of his disability, and in part that’s because in my opinion we haven’t put enough work into coming up with different communication systems for the variety of reasons why autistic people don’t speak.
Those who don’t speak and don’t have functional language systems, it’s entirely possible, and I know I’m going off on a tangent here but, that if we had started working with my son with a functioning language system when we first realized he had a communication disability, then maybe he would’ve adapted to it, he’s just really stubborn, now he’s got his routine going on, but if we had started early, maybe he would have a more functioning communication system and he wouldn’t have his incidents where he gets so upset because he can’t communicate with us what he wants to say, and everybody’s life would be better, primarily his.
I really wish people would invest more in these systems, and I don’t think any one system works for any one person, and I also think that I’m very frustrated about, especially with a lot of nonspeakers, again in the mainstream even the progressive media will automatically doubt anyone who uses an aided communication system despite the proliferation of evidence showing that, of course there’s gonna be a small amount of fraud in any support system, but for the most part nonspeakers who type or use letterboards to spell are speaking their own mind and it automatically gets dismissed based on one study that was completely flawed from the 90s.
And I guess I just get really frustrated, I’m just gonna go off on more tangents here, about the mainstream progressive media because they just don’t do due diligence, I don’t know if you’ve noticed that, especially with things like spellers and also when it comes to parents like me and Carol of children with significant disabilities, the mainstream media never questions us, and the thing is that there are a lot of parents out there who are not acting in their children’s best interests, and who are putting their children in horrible situations like insisting on taking them on cruises when their children have been very clear that they don’t want to go on a cruise, or taking them out in public because they think their child should be out in public when their child is very clear that they don’t want to go out in public, and then they publish accounts in the mainstream media about how hard it is for the parents, and nobody ever questions the fact that their children are being tortured and exploited and it’s just like the whole vaccine thing, nobody ever questioned it, and I don’t know if you can tell but I’m getting really upset here, because our kids deserve better.
How is it that the media allows our children to be treated so badly and never questions it? And I’ll stop now, I’m sure you have other questions and fewer tangents than I do.
Carol: If I could just interject something here, Shannon, I think the whole thing about your regrets over not having started your son with something, with AAC earlier, and maybe it would’ve made all the difference, every parent of an autistic child I have ever met, ever, says “If only we had gotten them diagnosed sooner,” and this is sorta similar. Starting AAC earlier probably wouldn’t have made a difference. If he’s resistant to it there are reasons, okay? The way it’s taught, the way it’s handled, also, it’s not just that we need better AAC systems, or that we need more technology, or that we need more appropriate technology, because assisted augmentative communication is really appropriate technology, appropriate to the individual, but it’s not just the better systems, it’s also the better training for the entire family or anybody who uses the AAC with the person.
Now my son invented his own AAC system, essentially. He’s not using it really fluently yet, but we’re following in his footsteps.
Shannon: Love it.
Carol: So what we’re doing is teaching him- essentially we’re doing a sort of texting lessons thing. Because we’ve found, and you’ve received texts from Arren.
Shannon: Yeah, [laughs.]
Carol: Middle of the night. No, I swear to you, unless there’s a monster in his closet, who’s dictating to him, nobody’s there. And Arren will text to Shannon about what he did that day, or what he wanted to do that day, it’s very clear that those are his words. He texts everybody I know, to our landscaper, to my husband’s doctor, he texts all the time.
And if you really look at these texts you can see a little short story: Hi, I went to the baseball game. Skiing is in the winter, surfing is in the summer. Have fun, love Arre. Little short stories, written in the form of letters. That’s his chosen form of communication, it’s real communication, there’s obviously communicative intent, what we really have to do is forget about the higher tech stuff that I sometimes use when my language becomes unreliable, and follow him.
So we’re teaching him to use his phone, to text from his own phone number, and not the account that I have. And he just, you know, to continue doing that, to make the stories longer, to talk about what he—he’ll often text a schedule of things that he’s made up, you know, “Go to bed, come home for dinner,” or whatever, but texting a schedule of his choosing? That’s really great communication, we know what he wants to do tomorrow, a lot of the things are doable, just really building on what he invented himself as a workaround.
Shannon: I love getting texts from Arren.
Carol: Yeah, he loves texting you.
Barry: Just to add a few thoughts, and it’s a theme that’s running through so much of what you’re both saying, and of course this goes back to a lot of the focus of the work that I’ve done with my colleagues, and sometimes we just focus on “how do we get the kid to communicate?” What’s the best system, and so forth. And we leave on the back burner the whole issue of the relationship between the well-regulated and physiologically emotionally and communicating.
So Carol, that’s what you’re talking about when you say that all of a sudden you can’t formulate a sentence or say words anymore, under certain circumstances, and the whole issue of selective or situational mutism plays a role there, but I think that’s what we’ve tried to build into our work, you have to pay as much and at times much more attention to supporting a person and having a well-regulated emotional and physiological state, which underlies so many abilities.
And I’m a speech-language pathologist, you know, so I’m saying now wait a second, let’s move a little bit away from the unitary focus on communication. It’s not gonna work unless that person has a partner who also helps them stay well-regulated or they get supports around the sensory challenges and the other issues they face on a daily basis.
Shannon: Let me just be clear Carol, when I say that I have regrets of course that’s the entire reason TPGA exists, is to tell people not to do what I did and give them a better way, but in terms of personal regrets I still think that Leo has a really good life, and I think there are a lot of ways it could be better, but we’re all doing our best.
What I really wanted to emphasize is that I think too often, and this is more Barry’s expertise obviously, I think when a child presents with a communication disability there’s an effort by a lot of speech professionals to push speech, and that is what happened to my son, and I want people to understand that it’s really important to have a functional communication system, whatever that looks like. That’s more important than speech, than verbal speech, if that’s hard for you then come up with another way, and I think the emphasis on speech because that’s what’s prioritized in our society is doing a lot of people with communication disabilities, not just autistic kids, a lot of harm, especially if it turns out that they have something called apraxia, which a lot of autistic kids do.
Trying to get kids to do something that their body finds very difficult or is incapable of doing is a disservice and communication is really important. When I was talking about how we need different communication systems, I wasn’t dunking on the ones that exist, I think Proloquo2Go is fantastic, and there are so many different systems, but they’re not enough. There are so many different reasons why people don’t speak and I think we don’t have enough communication systems to address them all because the field is understudied. We need more research.
Carol: Right? Absolutely and I also think that speech therapy as a term should be eliminated, and it should be called communication therapy. That would change a lot of lives. Because I simply know that especially since my son finished school, he is absolutely flourishing now as a result of having gotten out of school basically. It did him a lot of good when he was much younger, a lot of things that he does now that he probably couldn’t have done without a really good early school experience that he had.
But, once he got out of school and people weren’t shoving speech down his throat and were allowing him to communicate the way he wanted, about things he wanted to talk about, that may not have been their topics of interest, but they were his, once the official people got the heck out of his way and let him be himself and teach himself, because autistics are autodidacts. I think we all are, or at least certainly the ones in my family are. We teach ourselves because nobody’s been trained properly on how to teach us.
So, my son taught himself a bunch of things, and now when you stay out of an autistic’s way, and you let us teach ourselves and then come back to you and then you adapt yourself to how we taught ourselves, you get a lot more luck.
Barry: And also, we are talking about social communication. Which has to be underpinned by motivation and it should be, self expression. Expressing how you feel, expressing what you’re interested in, expressing what you wanna share. And it shouldn’t be about a lesson plan that a well-meaning professional, hopefully a well-meaning professional, came up with because these are the words they want from you, or this will make you sound more normal in how you speak. So important.
Dave: Barry, I have a, this is something I’ve always wondered about, and we’ve known each other a long time so now I feel like I can ask, wouldn’t all communication be social, or is there a reason for the special designation of communication for example in the search model and things like this.
Barry: Yeah, I think when we say “social communication” and this is actually a term that Carol used earlier in our discussion, it really does go back to communicative intent. What is this person wishing to convey or share? It’s not about oh, let’s just build up a vocabulary, or let’s help this person use appropriate syntax, or longer sentences. It’s about the motivation to want to engage others to express your intentions, and it can be anything from your feelings to your interests to your observations and so forth.
The goal of communication also indicates that speech is but a modality, and what I’m saying is not gonna be new to a lot of listeners or to our guests, but it’s just so important to say that we are all multimodal communicators. And we have to understand that for a person to feel, and this is our goal, for a person to feel competent and confident in being able to engage others, so they can have their goals met, that’s the bottom line. It’s not about the IEP goals that somebody connected from the child, and hopefully good professionals are really engaging the person and the family in coming up with what’s appropriate to improve quality of life.
Dave: That makes perfect sense. Thanks.
Barry: Do you see any trends in terms of topics? Actually Carol mentioned masking, which is a huge, huge issue, especially in terms of the mental health implications of masking. But in terms of articles that are submitted to TPGA, or what you feel about “Okay, we’re going in this direction, and we could be a resource to help people, parents, autistic people, kinda have a deeper dive into this topic.” Anything’s coming around the corner that’s really essential?
Shannon: I will say two things lately that I’ve found really interesting: one is the subject of PDA, or pathological demand avoidance, I think that, for those who don’t know that’s something that, I think it’s a formal diagnosis in the UK, but we recently had a conversation with Dr. Deborah Budding about this, I’d have to read the article, but we actually come from the position that PDA is actually a very realistic reaction to not being properly supported as an autistic person and not being able to function under the current demands, and that what we really need to do is do a better job of supporting autistic people.
And I would recommend reading our article because it does a better job of explaining it. But I think that a lot of conversation about PDA is, obviously people are sincere because you have so many people being like “Why am I stuck? Why can’t I do this?” And of course, being autistic can often come with a lot of executive functioning difficulties which then lead to problems with initiation and inertia, but the underlying reason in a lot of cases again is that people, especially children who are being treated as defiant when they’re actually overwhelmed from a sensory perspective, or there are competing access needs going on where one person might be making noises that another person can’t tolerate, and then the person with sensitive hearing has a meltdown, and they get blamed for acting out for no reason, things like that.
So I think that the shorthand of PDA is in some cases, and I think sincerely, because people are grasping for something to help them, think that the way that it’s being framed isn’t entirely useful to support the people who are identifying with the label, and I think what we really need is better understanding of, again, the complexities of how autism can present, especially in people who haven’t been supported, who get late diagnosed, who are considered to be “high functioning” which is not a term that we use because it’s just useless because if you’re diagnosed with autism, you’re diagnosed with having a disability, you’re diagnosed with having support needs, there is no such thing as, you know, a “high functioning” autistic person in my perspective because, again, put them in a pressure cooker of circumstances, right? So the PDA label is one of them, and another…
Barry: Before you switch, I just wanted to interject that I totally agree with you, and that the notion of pathological demand avoidance puts the onus on the person, as opposed to situation. You could call it chronic pushback syndrome, it has everything to do with emotional regulation, there are certain triggers that get a person to not want to comply, to push back against what they perceive as demands in their life.
Shannon: I think that people don’t really understand how incredibly anxious and high-strung autistic people can. There are also things like the ability to interpret other people’s tones of voice. With my son, if you speak to him in anything other than a pleasant voice, even just a firm voice or a neutral voice, he thinks you’re yelling at him. He thinks you’re angry with him.
So if somebody is talking to someone who identifies as someone who has PDA, and talking to them in a tone of voice which is anything less than pleasant, even if they don’t understand why they’re doing it, that could be a factor. And I think we really need to do a better job.
Another thing that really frustrates me is just this whole concept that people have where they think that if you just put support in place, if you put acceptance in place, if you do all these things that you’re supposed to do, then you’re done and you don’t have to do anything more.
And the fact that autistic people, the way they interact with the world is dynamic, and so any kind of supports have to be dynamic, and a process. The fact that my son needs one kind of support one day, it might not work for him the next day. Or if we set up a schedule, and he uses a visual schedule, and I’m like “Okay, well you obviously want to do this one thing every single day” and he’ll be like “Absolutely not, I don’t want to do this.”
And going back to PDA, somebody might treat that like defiance, when it’s just that he gets bored. Thriving on routine doesn’t mean that you always want everything to be exactly the same all the time, especially if it wasn’t your choice.
Barry, interrupting: And it’s not a character trait, it’s in the interaction.
Shannon: But the reverse of that too is that people, non-autistic people, they treat autistic people as if they don’t have personalities. Right? And if we don’t have this kind of understanding, I don’t know if that’s ever happened to you Carol, since you’re overflowing with personality.
Carol, laughing: Nobody has ever treated me like I don’t have a personality but they have clearly treated my son that way, and one of the things I actually love most in the world about him, and I don’t know what this says about me, I’m not sure I care, is that my son’s reactions are the best in the world, because when somebody tries to treat him like he’s not a human, he basically laughs in their faces. Just laughs at them. Especially when somebody yells at him, he’s not used to being yelled at. So he thinks it’s hilarious that they’re acting like such fools.
Dave: I love that.
Carol: Yeah it is pretty funny, they’re weird, huh?
Shannon: They are. And Carol, I was wondering if you’d be willing to talk a little bit too about how, in terms of understanding autism, I’ve witnessed this, how people suddenly treat you differently when you tell them that you’re autistic? If they don’t already know.
Carol: There’s this sort of conditional normalcy, you know? I mean you know, I’m just a normal person, until somebody finds out—well, not always, if you get to know me you know that there’s something different—but if you have just met me, I’ve learned enough social skills anyway, I think, that was a really hard process, that I have the privilege of passing.
Dave: Yep, I relate to this totally.
Carol: I have the privilege of passing, but I also have the burden of “I will get no help and no services because I can pass.” So it’s a double-edged sword. The minute people find out I’m autistic I get the whole bunch of stock responses that are really irritating.
The one thing that happened sort of right in front of Shannon, she was doing a workshop, in New York, my husband and I were there and everything, and some women came up to me and I had mentioned that I was autistic because I never shut up about it, and they said that they were proud of me. And I was like, I’m thinking inside, my social skills said “Yeah you’re not allowed to say that to people out loud,” but what I desperately wanted to say was “No, you don’t get to be proud of me, you don’t know me from Adam.” My mother, my dad, my grandmother, they got to be proud of me. Family members, they get to be proud of me. My son, god willing, would be proud of me, but you don’t know me. You don’t have that- they assume a sort of intimacy because I am somehow not a human, I’m more of a pet. They start to accept me as an autistic, as less than a full human being. It doesn’t feel great.
Shannon: But the thing that really struck me is they started talking to you with that voice.
Carol: Oh, the voice, yeah. I don’t hear tones of voice too much, but it’s what you call the “buddy” thing. There’s a female equivalent, and it’s all kind of gendered, but we both have sons who are autistic so they get the “Heeeeyy buddyyyyyyy” and it’s like, if you know my son, if you really do know my son, and he really does consider you one of his people, and a friend, it’s perfectly alright to refer to him as buddy. But if you’re not his buddy you better not be doing that.
Dave: You know, Carol, I will say in my public speaking I have made the mistake of using what has been conditioned into me and so many other people of being that bro-ish “hey bud” or “hey man,” or calling someone a nickname.
Carol: But would you do that with a stranger?
Dave: Yeah, but I always appreciate when there’s somebody in the crowd who is autistic, who will point out like, “I don’t like nicknames if you don’t know me.” And it’s like thank you, because I just do this as a knee-jerk reaction now, I can’t even explain why I do it. And so, just like what you’re describing, it can be very presumptuous to assume that we are on this level together. And I’ve been guilty of it myself.
Barry: Do I have permission to call you bro? Is podcasting that threshold?
Shannon: I think you have to be from California to call somebody bro, don’t you think?
Carol: No, it happens in New York all the time.
[everybody is laughing]
Dave: You have carte blanche, you had bro privileges from day one.
Barry: Watch out, you’ve never seen me carrying my carte blanche with me. Well I think we can go on and on and on, but what I’ve loved about this discussion is that we touched upon so many important issues that are coming up, very very serious issues, and in a sense, and correct me if I’m wrong, but both Shannon and Carol, in a sense it’s kinda like what you hope a forum is with TPGA.
Let’s put on the table all of these issues, some of them are a little more difficult to discuss and some of them are absurd issues, but certainly trying to get the record right I guess is the bottom line of what’s most important.
Shannon: Yeah, and the mainstream media doesn’t do it, so we do our best. Sometimes, they’re getting better, there are more autistic journalists, there are more outlets that do check-ins with autistic sources,
Carol: There are more autistic researchers who can be quoted, and that’s a big thing.
Shannon: But for the most part, autism representation is still just abysmal, and people don’t know any better because unless you’re a part of the autism community, most people don’t care, which I guess is fair, you know, right? But I just really hope we can do our part in creating a mind-shift towards better acceptance and understanding, at least among people who are in the autism and autistic communities so that they can all be better to themselves and better to their loved ones and lead better lives.
Barry: Absolutely. You are certainly making a major contribution in that direction, and hopefully we’re adding a little bit to that.
Shannon: Of course.
Barry: We’re partners here, right? And that’s so important. Thank you so much, and any last words, Dave?
Dave: No, this was lovely, thank you both so much, I just really enjoyed hearing these perspectives back and forth, it’s great conversation.
Shannon: Thank you Dave and thank you Barry so much for inviting us.
Carol: We’re honored to be here, thank you, we appreciate it.
Barry: We appreciate it as well. Take care.
[everyone says goodbye to each other]
