What do we mean by “neurodiversity“? Who does it include, how can we create more welcoming and accommodating environments for neurodivergent people, and what kinds of social, policy, and cultural changes will be involved?
The co-authors of the forthcoming book Neurodiversity for Dummies recently held a panel discussion and listening session on this topic. The session featured authors Ranga Jayaraman, Khushboo Chabria, and John Marble; accessibility and inclusion specialist Daniel Hodges; autistic autism researcher Dr. Steven Kapp, autistic journalist and author Eric Garcia, and TPGA senior editor Shannon Rosa. The full Neurodiversity for Dummies listening session video is available via LinkedIn, but for those who don’t do video, or LinkedIn, or who opt for text, here is the full panel transcript.
Ranga Jayaraman: I’m Ranga Jayaraman. Welcome to our listening session for the book “Neurodiversity for Dummies” that myself, and my co-authors Khushboo and John, are in the process of writing.
The objective of this session? I want to set a context for this session, so those of you who are in the audience can be very much contributors to the book, in terms of what you want to see in the book.
One thing that became very clear to John, Khushboo, and myself, through our work with neurodivergent people, and also with a number of parents that invariably reach out to us when we talk about neurodiversity in the workplace, in companies, and in universities, is that there really is a dearth of accessible information and resources that people can readily go to, to get more familiar with and more knowledgeable about what neurodiversity is, and what it really means if they’ve gotten a diagnosis for their child, in terms of the future for that child.
There are a lot of questions about neurodiversity that are not readily answered, and if a parent needs to go through the journey of trying to figure all that out, it’s a lot of work. I say this from my own experience because I am a parent. I have a son who is on the autism spectrum, and when we got his diagnosis, I knew so little about what autism is, and I had never heard the term neurodiversity. My immediate reaction to the medical profession was, “Okay, what is the prescription?” And then, I went on a journey to really learning about what autism is all about.
So, our goal with respect to this book is to make it widely accessible to different segments of society, as every one of us is interacting with neurodivergent people in some way, shape, or form. Maybe as a neurodivergent person yourself, or as a parent, or as an educator, or as a service provider, or as a medical professional, or in law enforcement. It doesn’t matter who it is, and it’s not confined to just the United States, right? Neurodiversity is a worldwide, universal phenomenon.
That is our fundamental objective in setting out to write this book. And because we wanted to make it highly accessible to people, we were fortunate that we were able to align with the Dummies brand of Wiley. As many of you who might have picked up a “For Dummies” book know, they tend to be very accessible, they don’t tend to be filled with jargon. And we thought that conversational, accessible mode of presenting it is a very, very important thing.
One other statement I want to make before I start with the introductions of all the people that are assembled here in the panel: the overwhelming message that John, Khushboo, and I want to communicate to the world with respect to neurodiversity is this: Neurodiversity is normal, and neurodiversity is something to be embraced. And we want to send this message of hope, optimism, and excitement for a future of a world that is intentionally neuroinclusive in every way that we can think of. Because such a world is a much better world, not only for neurodivergent people, it’s a much better world for every person, regardless of their neurological makeup.
With that said, very quickly, I’m Ranga Jayaraman, the director of the Neurodiversity Pathways program. We work with neurodivergent young adults to help them navigate the path to employment. We also work with organizations to open up both their hearts and heads to the normality of neurodiversity, and why they should intentionally include and explicitly support people whose brains work differently, because they have a lot to gain by doing that. As I mentioned, I’m a parent of an autistic son. Just by the way, just last week he got married, which is a milestone we never thought that we would ever see, and I’m so grateful. John and Khushboo were there.
And with that, let me invite John to introduce himself.
John Marble: Hi, everybody, I’m John. I am co-authoring the book with Ranga and Khushboo, who will introduce herself next. I’m multiply neurodivergent, probably best known for being autistic, although I have other neurodivergent experiences as well. And my background is a lot in public policy and workforce policy. And although I was diagnosed with other neurodivergent conditions as a kid, I wasn’t diagnosed as autistic until I was an adult.
And when I was diagnosed, I wasn’t sure where to turn or how to understand myself. I was just very fortunate that I was able to connect early on with autistic people who understood autism and other neurodivergent conditions from having neurodivergent brains. And I know what a difference that has made in my life, and for my friends with neurodivergent children, when I’ve seen them connect with neurodiversity-affirming resources, I see the dramatic difference it makes in their family’s lives as well.
I say all that to say that we feel a huge responsibility to create a resource that, for this series of books, and a lot of times for people, this is their starting point. So, we want to guide people to a neurodiversity-affirming starting point, so that they can look for additional resources that help them and their families thrive. So, I will stop there.
Ranga Jayaraman: and Khushboo, if you could introduce yourself.
Khushboo Chabria: Yes, absolutely. Hi, everyone, I’m Khushboo Chabria. I have had the pleasure of working alongside Ranga and John these past three years, both working in educating organizations and institutions and government agencies, in how to be more inclusive of neurodivergent employees and colleagues. And we also do the work of supporting neurodivergent job seekers through our career readiness training and the coaching that we do.
My journey with neurodiversity is a little bit different. I actually started as a clinician, working with neurodivergent families, doing in-home therapy, working with educational teams. So, I’ve worked for a couple of school districts as well, over the years, starting from being an aide to actually running programs to support neurodivergent children, and advocating for them in all of those different environments. I’ve also attempted to work in creating a social skills group, a parent training program, as well as a dating program. And somewhere along that journey, I ended up discovering my own neurodivergence.
And the reason why I ended up trying to do so many different things is because I, myself, was struggling with my own career and sort of navigating how to work with my ADHD strengths in the most effective way, and not let those differences get in the way of accomplishing my goals. And somewhere along that way, I came across Ranga and John, and I’ve been so grateful to both work with the neuroinclusive team and also be able to share with people what an amazing world we can have if we’re all intentionally neuroinclusive. So, we’re very, very excited to have you all here and really excited to hear everyone’s inputs, so that we can make this book an amazing resource for everyone. Thank you.
Ranga Jayaraman: Thank you, Khushboo. Let me invite Shannon Rosa to introduce herself.
Shannon Rosa: Hi, everybody, my name is Shannon Rosa, or Shannon Des Roches Rosa. I am the senior editor of Thinking Person’s Guide to Autism, which is an autism information nexus that focuses heavily on neurodiversity rights and autism research, and being a clearinghouse and nexus for autistic people, parents, and professionals—including people who have multiple identities there—to get the best autism information we can find, and help people dispel autism myths and counter autism misinformation. I am also the parent of three neurodivergent children. And my middle child, who is now just turned 23 two weeks ago, is a high-support autistic, so he does best with 24/7 support—and also he is delightful, as John knows, Steven knows, and Eric knows, although Eric has not met Leo in person. And that’s me, generally trying to fight the good neurodiversity fight.
Ranga Jayaraman: Thank you, Shannon. Steven Kapp, if I might request you to introduce yourself.
Steven Kapp: Hello, I’m Steven Kapp. I am a senior lecturer, which, I translate that to American English, it’s sort of between an assistant and associate professor in Psychology at the University of Portsmouth in the UK, but as you can probably tell [n.b. Steven does not have a British accent], I’m not from there. I happen to be from California, and am in California now, visiting. And I have broad research interests in what autism is and how to support autistic people.
I’m autistic myself. And I’ve been part of the neurodiversity movement. And within it, working with the Autistics’ Self-Advocacy Network, I helped influence the revision of autism diagnosis in the DSM-5, for example. And I’ve worked in employment systems change, to try to have inclusive employment for people with intellectual and developmental disabilities. I edited a book on autism, The Autistic Community, and The Neurodiversity Movement, Stories From The Front Line, which is free online and has narratives directly from autistic people and non-autistic parent allies, as you know, about their contributions to the neurodiversity movement.
Ranga Jayaraman: Thank you so much, Steven. If I may invite Daniel Hodges to introduce yourself.
Daniel Hodges: Hi everyone, my name is Daniel Hodges. I am the President and co-founder of Peaces of Me Foundation, where we are in the business of transforming the way that disability, differences, and chronic illness are perceived so that everyone can reach their full potential. Personally, I was born blind, and I was also diagnosed with anxiety and ADHD in my early 20s. Two of my three kids are also neurodiverse, in their own way.
My cousin and I started Pieces of Me Foundation when I was in the middle of law school, so that everyone could reach their potential, as I said, across disability lines or as allies, because we saw so many people falling through the cracks. So, as an advocate, now a law grad, and a nonprofit co-founder, I do what I can to help move the conversation forward and show that, you know, we are such an amalgamation of strengths and unique characteristics, and the more that we embrace that, the more we can reciprocate and be part of a truly inclusive society. So, I’m glad to be here.
Ranga Jayaraman: Thank you, Daniel. And last but not the least, Eric Garcia, if you may introduce yourself.
Eric Garcia: [Gray striped cat crosses the screen between Eric and the camera] Hi, sorry, this is Bam Bam, my cat. My name is Eric Garcia. I am a senior Washington correspondent at The Independent. I am a columnist at MSNBC, and I’m also the author of the book We’re Not Broken: Changing the Autism Conversation. I really started writing about autism and how autism intersects with politics, for the past seven years—mostly, really now, kind of the past eight years—because I felt that, at the time, the way autism was discussed in politics was really divorced from the daily lives and experiences of autistic people.
So, I wrote the book We’re Not Broken, and I’ve since then written a lot about autism, disability, and how it intersects with politics, which is how I got to know John Marble, because John Marble, like me, is also a former White House intern and also a journalist. So, we’ve gotten to know each other really well. I interviewed John, and I interviewed Shannon for my book. I wrote for Steven’s anthology. So, I write regularly about autism, disability, politics.
Ranga Jayaraman: Thank you so much, Eric.
For the LinkedIn audience. I’m going to be now projecting a slide that has a QR code as well as a tiny URL, as well as simply a website with a number. You can reach that website through any one of those means, and there will be a set of topics that have already been put up there. You can review the topics, upvote the topics if that’s top on your mind, and you can add your own topics to the list, you know, whichever way you want to contribute your thing to.
Looking at the topics that you upvote or you put a little later, what I want to do now is go around and ask our panelist for what is top on their mind. If there is a book on neurodiversity for dummies, what is sort of one topic that they absolutely feel like must be there? It could be a topic that they feel like has hardly ever been touched upon, or it’s really a hot button topic on their mind. And, as you state what the topic is, I would also like you to elaborate on it a bit in terms of why you think it is important that it be included in the book. And I’ll start with you, Shannon. What is your topic?
Shannon Des Roches Rosa: In my opinion, the topic that is not discussed enough as a neurodiversity concept—even though it is central to the idea of neurodiversity—is just how complex and diverse neurodivergent experiences are.
The reason this is important to me is because people sometimes think that neurodivergence only matters if it’s obvious, like my middle child, and there are so many people who never get support for their neurodivergence because their neurodivergent traits are less obvious, like my two other children, who I thought were just fine and needed no support because they were nothing like their high-support autistic brother. It turns out that is actually incorrect, and it would have been a lot better for both of them if they’d gotten more support for their accommodation needs as soon as they became apparent. But again, as a society, we tend not to pay attention to things that are less obvious, or we tell people to just suck it up and deal with it, and say things like, “I know you think that that noise is loud, but it’s just fine, you’re fine, you should be able to put up with it.”
And especially in the cases of people who are able to meet academic milestones or work in offices, if they can do that, if you’re meeting a certain level of functioning, people think that you are fine—without realizing that with accommodations, those people could be producing so much more work, if you were going to look at it from that perspective, but also be so much happier at work, at school, and not have the kinds of anxiety and mental health issues that we see being either created by or exacerbated by the lack of supports. So, recognizing the breadth of neurodiversity support needs would be my priority.
Ranga Jayaraman: That’s an incredible, incredible topic. If it is out of sight, it’s like, you know, you’re then totally fine, you know, that kind of thing pervades a lot of thinking.
Shannon Des Roches Rosa: And just, not to get too sad about it, but for the autistic community at least, this underlies the elevated suicide rate in both people with intellectual disability and people without disability. We have a lot of research that makes this very clear: Unsupported neurodivergent people have a higher rate of suicide and suicidality. We need to address this. It’s not just something that would be nice to address, it’s literally a matter of life and death.
Eric Garcia: Sorry, I don’t mean to interrupt. It is literally the second biggest killer of autistic people without intellectual disabilities, behind heart disease.
Shannon Des Roches Rosa: Yes.
Khushboo Chabria: Wow!
Ranga Jayaraman: Thank you. It’s a very high-stakes topic to be touched upon.
Steven, how about you? What is top on your mind?
Steven Kapp: One topic might be the difference between rights and acceptance. Sometimes people will debate about the scope of neurodiversities, and arguably, it could be any variation that may or may not need to be disabling, according to different definitions, that relates to the brain, and so could be something that might be medicalized as chronic illness, or maybe a psychiatric disability, or the various less controversial learning disabilities, or other developmental disabilities.
But what unites everyone is the need for our rights to be protected. And if you view people as having, if you want to call it a disability, I think legally, just about everyone, you know, unless people wanted to get into academic discussions about is left-handedness a neurodivergence or something, but usually, we’re talking about people with disabilities who sometimes haven’t been recognized as having a disability, and maybe calling it neurodivergence helps people to think sometimes there are aspects that might have neutral differences or might have strengths. But these rights are non-discrimination, or reasonable accommodations, and arguably, people should get the services and supports that they need, as well.
And then on top of that issue, there’s acceptance. And then, whether particular traits of neurodivergences that might go far beyond autism, far beyond ADHD, and dyspraxia, or what have you, dyslexia, and intellectual disability, and to what extent some of those traits should be accepted, ameliorated, maybe mitigated for people to kind of harness the traits in ways that work for them, or maybe even, you know, try to be eliminated in certain specific cases. I think that’s a complex conversation, and we need to listen to people with those neurodivergences, wherever we can.
Ranga Jayaraman: Thank you, Steven. I mean, the umbrella of neurodiversity tends to be very, very broad, and, you know, many things that may not be readily apparent like autism or ADHD or things like that also need to be in the discussion.
Daniel, how about you? What about the topic? I mean, you are coming at this with a much broader lens, meaning of disability in general. What would you like to see in a neurodiversity book?
Daniel Hodges: You know, I am actually going to pivot from what I thought I was going to say, based on Shannon’s comments, and talk about compulsory treatments. Because we just talked about suicidality among those of us that are neurodiverse, and I think there is a push, for instance, based on a recent law that was just enacted in California, for instance, where the popular notion is that if you compel treatment, it will decrease or mitigate the effects of mental illness. What’s missing from that conversation is the fact that there are many of us who choose alternative ways to manage our mental illness, our anxiety, our neurodiversity in one way or another, that, if it works for us, should be the determining factor.
Because if you look at the science, let’s say, regarding treatment of depression, bipolar, anxiety, the science is very split as far as the efficacy of prescription medications. And the science is also very clear on the fact that many of these conventional medications can have mild, all the way up to catastrophic, side effects for people. So I think our ability to determine within our own lives how we choose to manage our symptoms and our conditions, and not having to be compelled, or not being compelled to receive treatment that could be quite harmful, is a discussion that really needs to go forward. Because right now, we are on the cusp of having those rights severely curtailed if some of these laws continue to go forward.
Ranga Jayaraman: Wow, what a critical, critical topic. Uh, critical topic indeed. Thank you for sharing that.
Shannon Des Roches Rosa: This is Shannon. I just want to interrupt to say that what Daniel is talking about is the Care Act that Governor Gave Newsom did in fact, sign, and it was roundly opposed not only by disability organizations, but by rights organizations like Human Rights Watch.
Daniel Hodges: Yes. Just to give you a little bit of legal history here, you know, we’re only a hundred years removed from a case called Buck versus Bell, which was where forced sterilization for people with disabilities, including intellectual and developmental disabilities, was upheld as not only being legal but actually being preferable, according to people who did not have our rights in mind. And technically, that law, that forced sterilization law, is technically still law federally, even though it’s been scrapped on many state levels. But we have to be really careful to not slide backwards because, my friends, we’re only a generation or two away from where our rights to just participate in society were severely limited, and I don’t want to go back there.
Ranga Jayaraman: Yeah, thank you for that extremely important topic, Daniel.
Eric, how about you? What is top on your mind with respect to a topic?
Eric Garcia: Oh, I mean, I cover politics for a living. But I think that the biggest one to me is lifespan issues. We don’t do a good job. I think something like only 5%—I forget the exact number off the top of my head—of all US research including nonprofit and US Government research, goes towards researching lifespan issues. There was a GAO report, I think in 2016, showing that with autistic people, we don’t even do a good job of transitioning them into adulthood. Shannon, you and I could talk about this like for 24 hours, and not get bored.
Shannon Des Roches Rosa: [laughing] I know, right!
Eric Garcia: I think about this because I use social media a lot—and what was funny is that one really genuinely concerned parent was telling me, ‘What happens to non-speaking autistic people when they get older?’ I said, “Well, so I’ve talked to some of them; they go to work, they have jobs. But there’s also just, really not a lot of… you know…” I wanted to give him a good answer. I wanted to say, like, “Oh look, there’s all these different things.” But in good conscience, I couldn’t because, to Daniel’s point, not only are we a hundred years removed, less than a hundred years removed from Buck v. Bell, we’re also only like 40 years removed from deinstitutionalization, 40-50 years removed from Deinstitutionalization, and we haven’t crafted or considered what would be an alternative.
A lot of well-meaning liberals like to say, “Well, Ronald Reagan took people out of institutions and put them on the streets.” No, deinstitutionalization was still bad. Like the problem wasn’t deinstitutionalization; the problem was we didn’t come up with an alternative. The problem was that we didn’t have a viable alternative.
So, Shannon, you talk about how suicide is one of the biggest killers, also heart disease is one of the biggest killers for people without intellectual disabilities. Epilepsy is one of the biggest killers for autistic people with intellectual disabilities. But even then, we’re starting to see, thankfully, autistic lifespans increase, even though the average age is around 34, still. And I think about that a lot because I’m turning 34 next year, and I’m turning 33 in two weeks. We still haven’t thought… we don’t have enough of an imagination to think about what some alternatives to institutionalization throughout people’s lives, because one of the big things that scares a lot of people that I interview is parents saying,
Can I outlive my kid?” And I would love there to be an alternative to parents freaking out about whether they can outlive their child.
Sorry, sorry, that’s a lot.
Ranga Jayaraman: No, no, no, no, that’s, I mean, every one of these topics you guys have brought up are just such critical, vital topics with respect to someone living their life as a human being, with respect and dignity, by people for themselves, and also people around them.
And so I just want to again sort of address the audience that are on the stream. There’s about 37 people that are there in the Stream. If you have topics that you would like to put forth as things that you want to see in the book, please use one of those mechanisms, either the QR code or the tiny URL or go to slido.com and use that number to review what is already there and maybe update them or put in your own topic. While you’re doing that, Steven, you have your hand up.
Steven Kapp: I wanted to add to what Eric was saying about: it’s not just adulthood, but the US government, you know, Interagency Coordinating Committee also barely has funding for Services Research, and that’s really important to be able to use services more effectively and equitably. And not to just see services and research as separate.
And, also, there are many injustices affecting autistic people’s lives and lifespans, but the age 34 statistic is not really accurate. It’s based on a study with incomplete data and the participants in many cases hadn’t yet died. Which is a good thing, that they’re still probably, even to this day, living for the most part. And so, I’m not sure exactly what the statistic would be, but I think from that study, our lifespan is higher than that. Not to say that suicide, and other factors, and epilepsy don’t limit it for some people.
Eric Garcia: And to update, only, I think, 2% of all dollars go to lifespan issues, and only 6% goes to services. So, yeah, yeah.
Ranga Jayaraman: When we were trying to characterize the neurodiversity in the workplace topic, which is really a subtopic, one thing we found is the dearth of definitive information in terms of really what fraction of, like, autistic young adults after high school enter college and how many of them really disclose, how many of them really graduate, and how many of them find employment. There’s completely a dearth of information about that. We all use the very little information that is there, but I do sometimes wonder what the validity of those information are.
Daniel, you have your hand up.
Daniel Hodges: Yeah, I was also gonna tie something onto Eric’s point. We talk about different particular health risk factors for neurodiverse individuals, and, you know, the life lifespan. The other element that we have to address here is the fact that there are really severe health inequities that are involved with any kind of disability, but that certainly includes those of us who are neurodiverse. I’ve done a lot of studying on this, and there are some real misconceptions out there regarding our quality of life, which you would like to think wouldn’t impact the healthcare that we receive, but there is a pretty strong collection of evidence that shows that it does. And so, I think we need to do a much better job educating the medical community as well, that our lives are worth living, and thus that we need to get, you know, healthcare that is on par with our peers.
Ranga Jayaraman: Thank you, thank you, Daniel.
Khushboo, from the audience side, I see several questions, and many of them are anonymous, but some of them are from a specific person. Do you want to pick one of the non-anonymous questions and maybe, you know, pop that to the panelists?
Khushboo Chabria: Absolutely. We have one here from Ryan. “What are some best or emerging practices for increasing inclusion and accessibility in employment?” And another question is, “What are the missed opportunities in career development?”
John Marble: I’d like to call both Daniel and Eric because you both kind of intersect with that, and then anyone else as well.
Eric Garcia: I think there are a lot of misconceptions. One of them is that there’s this commonly carted-out statistic that 85% of autistic people are unemployed or underemployed. That is a… I remember when I was researching my book, I tried to find that actual stat, because I heard it kind of dollied around, and so being a journalist, I asked where did that stat come from? And it was like a Russian doll. And then when I finally got to it, it was like a 404, like not even found anymore.
But even then, it’s BS because that doesn’t account for undiagnosed autistic people, that doesn’t account for autistic people who don’t disclose, that doesn’t discount for a lot of other confounding factors. But, on top of that, I think that the one of the big impediments, and one of the big challenges that really needs to be ameliorated, or one of the ways that this can be fixed is: whether employers know it or not, you have autistic and neurodivergent people in your workplace.
It’s funny: I’m in recovery, and my Twelve Steps meeting that I used to go to was in Pentagon City. John knows this because you live in D.C. How many neurodivergent people work at the Pentagon? Or work over in Langley? But even at your local McDonald’s? We tend to think of autistic people as only working in tech, or finance, or anything. [But] there are neurodivergent people in every trade, literally every trade. I think that’s important, and I think the other thing is that employers, as well intentioned as some of these neurodiversity hiring programs are, I think that they need to be led by neurodivergent people themselves.
So, employers really need to ask themselves, what kind of culture can we create so that people are more comfortable disclosing that they are neurodivergent, so that in that way, we can move toward a better neurodivergent hiring program. And I think the other important thing, and John, you know this, before you can even start any neurodivergent hiring program, you have to clean your house first.
John Marble: And, and for the sake of the audience, can you explain that?
Eric Garcia: Oh, cleaning your house first: What I mean is that you have to make it so that it is already neurodivergent-friendly before you even begin these hiring programs. You need to consider, what are the impediments? Because a lot of these neurodivergent hiring programs just focus on people being hired. They don’t focus on retention.
John Marble: Yes.
Eric Garcia: They don’t focus on personal growth, or career, or moving up in your career. It doesn’t focus on what makes something neurodivergent-friendly. For example, open office spaces. I cannot think of a worse thing for neurodivergent people than having open office spaces, which is ironic because Google has it. And it’s like, God, I know so many neurodivergent people at Google. And, John, you probably know them too.
John Marble: yes.
Eric Garcia: But, essentially, you need to make the places good before you start bringing them in. You wouldn’t have a restaurant opening if there weren’t enough forks.
John Marble: Yeah.
Eric Garcia: In the same way, you can’t have a good neurodivergent hiring program if there aren’t neurodivergent people there leading the way, and leading the charge in these hiring programs. So, that’s my soapbox.
Ranga Jayaraman: It’s like not preparing the ground before you start seeding. The seed may take hold a little bit, come up, or may not even germinate. I mean.
Eric Garcia: Yeah, yeah.
John Marble: Eric, let me ask you, because I think you make a great point about talking about the overall conditions for neurodivergent people. But, when you’re researching that number with autistic employment, we’ve gone through a similar thing where it’s like a Russian nesting doll going down to see what that is. You said that it doesn’t capture everybody, but does a statistic like that capture a certain segment, or how would you handle a statistic like that?
Eric Garcia: I think that, without holding up a piece of misinformation to make a larger point, I think that it probably accounts for autistic people. I think the reason where that number comes from is probably comes for a lot of autistic people with intellectual disabilities, or a lot of autistic people who struggle with graduating high school or college. I mean, I think one of the things that’s really interesting that a friend of mine who is autistic and she runs a business, she didn’t graduate college, and the way that she was able to get good work was that, before she was diagnosed, she joined the military.
So, that number exists, and that number is carried out all the time because there is a large segment of the population that has trouble finding employment, that can’t find employment, or is chronically underemployed. That’s not even talking about autistic people, and any other people with intellectual disabilities, who are paid below minimum wage, because it’s still entirely legal to do that. So I think that number gets thrown out there because there is a significant segment, particularly autistic people with intellectual disabilities or ones who have trouble even graduating high school and college. Or who age out of the system, who have no transition… who have no kind of plans for transition. A large chunk of neurodivergent people, and autistic people as soon as they turn 21, they don’t get any services and they become disconnected.
John Marble: And that makes me think about a point that Steven and you were making about research and what we capture. And it means that we don’t even capture the… How should I say this? I don’t want to say that we, as for those of us who are autistic, we get stuck in certain things, but we get comfortable a lot of times and maybe we don’t advance and take different opportunities. It seems like that might be a research area as well.
Eric Garcia: Absolutely.
Shannon Des Roches Rosa: I just want to also say that when we talk about the extremely high rate of underemployment, specific to the autistic community, that’s only for people who are actively seeking employment. It doesn’t include all the people that were just mentioned who are not participating in the workforce. So, it’s not talking about the autistic community as a whole. The extremely high unemployment rate for autistic people is only for those who are actively seeking employment.
John Marble: And Shannon, and Steven, if you want to join in on this, what’s that messaging to readers that: look, there’s going to be neurodivergent people who may never join the workforce for various reasons. How do we adequately convey to readers that these individuals should just be valued and seen as normal like everyone else?
Shannon Des Roches Rosa: Well, everybody has rights. This is the whole, you know, the whole capitalist society ethos just drives me nuts, because it’s like you don’t matter unless you can contribute, right? And we don’t need to look too far into the past to see how badly that plays out if it becomes policy. I think we really need to work on the fact that everybody matters and everybody has rights regardless of whether or not you’re a contributing member of society.
And an example would be my own son, who… he’s 23 now, he turned 22 last year, which is actually when people get their services cut off. And… it was hard. There was nothing for him. I mean, I could have put him in a number of day programs, but they are all either what a friend of mine calls “potato farms,” purely custodial and not enriching, or they were ABA-based, and I don’t want my son in an ABA therapy-based program. And so, it was really hard. We finally have come up with a team, thanks to, services that are available and being able to supplement them on our own, because we’re in a fortunate position to do that. But it’s brutal. You know, we’re a two-parent family, we’re native English speakers, we are both advanced degree holders. We have a comfortable income. We have all the advantages, and I work part-time. So: All the advantages that should have made it easier to navigate the system, and it was still brutal.
I think when we talk about whether or not people who have trouble… who are not contributing to the system… how we should approach them, it should be, first of all, to make sure that everybody has something to do during the day, whether they have a job or not. And this is a real problem with something like the 14(c) sub minimum wage program that Eric wrote about recently for MSNBC, which, what did you say, Eric, about how many people who are still in those programs in the United States?
Eric Garcia: 120,000. And the reason for that is that you’re seeing a lot of states, including a lot of Republican states, get rid of subminimum wage labor.
Shannon Des Roches Rosa: Yeah.
The problem that we see is that these subminimum wage or sheltered workshops become entangled with day programs.
Eric Garcia: Yes!
Shannon Des Roches Rosa: And because the services are entangled, we have all these parents who are desperate for the 14(c) programs to not end, these subminimum workshops to not end—but it’s not because they support subminimum wages per se, it’s because they need a day program for their loved one. And we need to disentangle those.
So, my answer would be that everybody needs to have rights, everybody needs a place to go, and we need to disentangle bad policies from these programs. It’s a labor law issue with the 14(c). Nobody should be paid subminimum wage if they’re doing active labor. That is a loophole that—again, you know, here, banging the anti-capitalist drum—but it’s a loophole that only enriches people on the backs of disabled people who are already disadvantaged. And again, somebody like my son, maybe he will eventually be in a work program. Right now, he’s not. It shouldn’t matter with regards to his rights. But anybody who wants to work and can work, should be paid for their work. They should be paid fair wages. That is a labor law issue. And the parents who oppose ending 14(c) programs are on the wrong side of history.
Ranga Jayaraman: Yeah. Do you want to move maybe to the next?
John Marble: I’ll say that, to transition that, I’ll let Kush bring up another topic. But just real quick, Shannon, you make me realize that right now, I’m working on a part of a draft of a chapter where I’m talking about all the benefits of the contributions of neurodivergent people. And you help me realize that in my mind, I’m talking about people like your son and what he contributes, but you help me realize that maybe not all readers will read it the same way that I am intending it, and maybe I should look at that language.
Shannon Des Roches Rosa: You do not have to “contribute” to have rights and to matter as a person.
John Marble: Thank you.
Eric Garcia: Yeah, I would agree. I know that we got to move on, but I agree wholeheartedly. And I would agree wholeheartedly that rights are rights because everybody has them, or else they are privileges.
Several participants: Yeah.
Eric Garcia: And everybody has worth, regardless. You know, we can simultaneously highlight the contributions of neurodivergent people, while not making their humanity contingent upon them. We can say that they contribute greatly to society, and that we can grow from them, without saying that that is the sole reason that we should support them.
Shannon Des Roches Rosa: And also, some people might interpret that, Eric, which I know is not what you mean, but they might interpret that as saying something like, “Oh, having disabled people around enriches my life and teaches me to be a better person.” Absolutely not. Like, that might be the case, right? I was just talking about this with Steven last night: Like, neurodiversity includes jerks. Even if you are like not a fun person to be around, even if you’re very difficult to be around, make life difficult for other people, if you have incredibly high support needs, and you need three support people to help you get, you know, your happy life, you still matter. You still are part of the community, and you still have rights, and you still deserve accommodations. It just makes me so angry when, again, there has to be some sort of justification for somebody to exist. It’s like, it doesn’t matter what kind of person you are, you have rights.
Eric Garcia: Yeah, I agree. I agree.
Ranga Jayaraman: Steven, you have your hand up.
Steven Kapp: I agree with Shannon, and, further “Occupation,” is a word that, for many people, has a similar meaning to “employment,” but it what does that word mean to you? To autistic people, people with intellectual disabilities, and they were more likely than people without disabilities to think of various meaningful activities that were not related to paid income. And so, some of these could be volunteering, but it could also just be engaging in interests that are meaningful. You know, doing, I don’t know, somehow doing something in the community. But it doesn’t have to be part of a capitalist society, in the sense of: there are ways to be a valued member of society without actually it all having monetary value, in that sense. And it’s important not to exploit people.
Ranga Jayaraman: Yeah.
Steven Kapp: And there’s various evidence of sheltered workshops and subminimum wage programs not working for the intended points of supposedly functioning as training programs or this or that, you know. For the people who really can and want to work, sheltered workshops are actually not working for them.
Ranga Jayaraman: Yeah, push, maybe to the next topic.
Khushboo Chabria: Yeah, I wanted to switch gears a little bit and hear from the panelists about how neurodivergent people can thrive in interpersonal relationships, and in the community. Outside of employment, what that would look like and what are some thoughts around that.
Eric Garcia: I could probably start. One of my favorite memories was when I was speaking about my book, last year when I was touring around the country. Because my book launched in 2021, and I really got to travel in 2022 when the paperback came out. At one of my last speeches in 2022, I was giving a speech at the University of Virginia. And people asked me about university life. And it’s interesting, because one of the big reasons that neurodivergent people struggle with suicidal ideation in college isn’t because of the academics. And the academics can be hard, I’m not diminishing it. But it’s the socialization part.
And I said to, I think it was either an administrator or an educator, I said, one of the things I’m excited about is, literally, right after this, I’m taking a plane from Charlottesville to Charlotte for my best friend’s from college’s wedding. I think that one of the things that I’m lucky with is that I work in journalism, so we’re kind of a rugged bunch. We’re kind of roughnecks. I’m lucky that I have friends. And then I also had friends growing up, playing in heavy metal bands, and in rock and roll bands, and punk bands, and things like that.
So, I was lucky that I was in communities where oddballs kind of thrived, even if it wasn’t explicitly neurodivergent. Though, in hindsight, God, there were so many neurodivergent people. I think that one of the things that really matters is you need to have people who will meet you where you are, and who will accept you for who you are. I think that this generation, the coming generation—not all of them, because God, there are some very intolerant people, if you go on a college campus; mean-spirited people. Or a high school campus, or whatever. But I think that the more people are aware of neurodivergence, and the more that it becomes part of their lexicon, the more accepting they’ll be: “Oh, that’s just how they are.”
I’m not saying it’s perfect, but, I think that one of the most important thing is, that you need to have friends who understand you. My friends understand me. I’ll give you an example: A few weeks ago I went to a Halloween party. And the next day, my friends were going to have a pumpkin carving party. My friends understood I could only go to one of those two. And they also understood that, after three hours at the first party, I was done. I think that that was just, like, they’re cool with that. They recognize that I can only do so much.
In the same respect, not to get too personal, I only date neurodivergent women now. I’ve tried dating neurotypical women. With all due respect to neurotypical women, there are just too many impediments, and there’s too just too many barriers, and too many things I had to explain. So, I’m at the point that I’m no longer dating neurotypical women. I need to date neurodivergent women, because we understand each other and get each other.
I think what’s important, is, you need to find your people, and there are people out there who will get it. I think that, most of my friends, one of the things that I say all the time is, my friends may not understand sensory processing disorder, or use the word stimming, or things like that, but they still get it, you know. And, one of the great things is that, some of my friends, as I’ve gotten older… Like, one of my friends is a mom, so now she loves when we don’t go to really loud restaurants and bars, you know? So that’s fantastic.
Ranga Jayaraman: And Daniel, maybe we can call on you, you have your hand up, and Steven.
Daniel Hodges: Yeah, I think, adding on to that, understanding that—and I think this applies for, for both the previous question that Ryan submitted, as well as this one—understanding that becoming more inclusive doesn’t correlate with lowering of standards. So, oftentimes, we talk about accommodation, as though it’s kind of lowering the bar, and I think that is a completely broken paradigm. So, when we talk about looking at alternative ways to bring people into the fold, understand that, in all reality, if we do it right, we’re also elevating the experience for everyone. I think that’s what we can do as a group, and then, individually, I know for me, a lot of my work, especially post-divorce, has been—and while I was in law school, as well—has been looking at: Okay, these are the things I bring to the table, these are the elements of interaction I struggle with, and that’s okay. Learning that I don’t have to check all of those boxes, but recognizing the gifts and talents that I bring, because—although I agree with Shannon that talents and gifts shouldn’t be linked with our human rights—but also, we need to recognize that we all do bring gifts and talents to the table. And that real inclusion leverages those things and draws upon those things, so that we can all be part of reciprocity instead of just being allowed to be in the situation, if that makes sense.
Khushboo Chabria: Yeah, and I was gonna say, Daniel, I know that we talk a lot about the importance of community. I was hoping you would speak to a little bit about that as well, because that’s also part of the question of how a neurodivergent person can thrive in community.
Daniel Hodges: Yeah, and, to me, the difference between inclusion and belonging is: inclusion is, okay, well, we’ll let you sit at the cool kids table, but belonging goes deeper, and saying, as part of being human, we all want to be part of a give and take relationship. Reciprocity, as it were. And so, allowing those relationships to develop and deepen, in whatever way is natural in the circumstances, I think that’s how we build real community, where we appreciate one another’s gifts and talents and needs. And we say, okay, we’re going to treat you a certain way, because you’re human, absolutely, but that includes embracing the things that you bring to the table. Because, if we’re doing this right, we’re really drawing out the best in one another, regardless of circumstances.
Khushboo Chabria: Absolutely. Thank you, Daniel.
Steven Kapp: Regarding relevance to neurodiversity, having a neurodiversity-aligned perspective helps autistic people to be able to identify with fellow autistic people, whether to make friends, or romantic relationships, as Eric says. There was a study about looking at the world through rainbow-colored glasses,, and how for autistic adults who view autism as a disorder, then seeing themselves as more similar to other autistic people is actually associated with worse mental health. But there wasn’t the same negative effect for autistic people who view autism as a form of neurodiversity, or as a type of mind, in the words of the author. This means it actually can help autistic people’s social relationships and well-being—there was a direct relationship—to have a pro-neurodiversity perspective. It can lead to better well-being for autistic adults.
Khushboo Chabria: Absolutely.
Shannon Des Roches Rosa: I think it’s really crucial that we mention the double empathy problem here. The idea, which was originated by Damian Milton from the UK, who’s also the parent of a high-support autistic person and autistic himself, is that the communication, socialization, goes both ways. It’s a two-way street, right? But the problem is that, for the most part—and Steven can correct me on anything I get wrong here, since he’s the academic—that autistic or neurodivergent people tend to understand other autistic and neurodivergent people well, and non-autistic people tend to understand each other well, but there are cross-channel communications. And so the problem really has to be with making sure that you are having your social environments be neurodiversity-friendly, and that means legitimately. And it’s the same thing that we were talking about when, you know, was it Eric who said to you need to clean your house.
So, if you are going to be having social environments, you can’t make them all predicated on purely neurotypical rules, like saying you can’t flap, you must maintain eye contact, you have to have a standard job interview. I know that Microsoft has done really great work in diversifying their recruitment process, when they suspect that autistic and neurodivergent individuals are in the train, in terms of making the process much more chill, making sure the questions are available ahead of time, coming up with different ways to determine the skill sets of their employees. But, but the same thing is true in social environments as well. You’ve got to make it an even playing field, and that means recognizing what it means to communicate with neurodivergent people.
So when Eric was talking about how, if in social situations, he needs to leave early—people need to be better about understanding these things, and be more accepting, and it can’t just be based on standard social cues. It’s not going to work. And this is why a lot of times, like Eric said, he’s going to be dating neurodivergent people, and that completely makes sense to me. Like, I don’t have a diagnosis myself, but I’m a huge big nerd, and I am miserable around people who aren’t big nerds. I want to talk about information and fun things, and people who only want to make small talk make me want to just shut my eyes and wish myself into another space.
Ranga Jayaraman: Khushboo, maybe we can move on to the next one, it seems like a big topic.
Khushboo Chabria: Yeah, this one has been voted by the most people, but the topic is on intersectionality and neurodiversity, so including gender, race, and age, and how that should be communicated through this book. Does anyone have thoughts on this?
Eric Garcia: Yeah, I mean, one of the things that’s interesting to me is that, when I was researching my book, one of the things that fascinated me is that the first book, the first real research that was done on autism, at least in the United States, that was widely read, was by a guy named Leo Kanner, at John’s Hopkins University. And the initial eleven subjects, of the eleven subjects, nine were Anglo-Saxon, white Anglo-Saxon, and two were Jewish. And it’s funny because I live a two-hour ride away from Baltimore, and Baltimore, even back in the day, was not primarily white Anglo-Saxon. It was Jewish, it was Polish, it was Irish, it was Italian, you know. And then nowadays, Baltimore is a very Black city. It has a large Black population.
But, like, guess who could have afforded to get a screening, to go to the premier child psychiatrist in the 1930s and 1940s? It was upper-class folks. So, let’s take that into account. And I think that that’s important because eight of the first eleven subjects were boys, and three of them were girls. You cannot discount those things, those factors that had created the skewed diagnostic criteria.
One of the important things to recognize was that, in that initial study, they noticed that all the moms worked, and that was part of the “refrigerator mother” theory, cockamamie stuff. Well, guess what, there was a lot of anxiety about women in the workplace in the 1930s and 1940s, until we sent all the men to war, and women needed to work.
It’s important to recognize that all this set the template for what autism diagnostics were, and what we think of as we think of autistic people. So, when you have a teenage Black child flapping his hands around, very normal autism manifestations that would be socially, you know, maybe troublesome to white people, if it was a white child—but it now it’s seen as a threat, because we don’t see autism as something that’s a Black thing. We don’t see autism as something that is a Latino thing, or an Asian-American thing. And there’s still a lot of stigma surrounding that, within these communities. I think it’s important to remember that, because we’re still operating from this outdated textbook of what autism looks like, that we’re doing it at the expense of marginalized communities. We’re doing it at the expense of girls. We’re doing it at the expense of non-binary people. We’re doing it at the expense of poor people, as well.
You know, a lot of neurodivergent people are poor. If you’re on Medicaid, it takes a lot longer to get services, just because of the fact that a lot of insurers, a lot of service providers, don’t take Medicaid. Or if you do, doctors are reimbursed much less, so they have less of an incentive to take someone on Medicaid. So let’s take that into account.
It’s also really important to recognize that—because, I mean, today is Transgender Day of Remembrance—it is very important to recognize that research has shown a large intersectionality between, transgender identity and autistic identity. Now, you are seeing that be weaponized in a lot of Republican states, to ban gender-affirming care, because there’s this idea, it’s really kind of skewed, that, autistic people don’t know what’s best for them. Or that because so many trans people, identify as trans, are autistic, that somehow that’s why they’re being tricked into being trans. You hear not just J.K. Rowling say that, but you hear Marjorie Taylor Greene say it. That’s the basis for the legislation, for the executive order that was blocked, I think, in Missouri, and that is happening in North Carolina.
So, there is a lot there.
Khushboo Chabria: Thank you!
Daniel Hodges: You know I want to add to that. I mentioned earlier, being blind, and there’s a very strong possibility that my ADHD was missed for years due to my blindness. And that’s actually not uncommon among those of us who have physical or sensory disabilities and also happen to be neurodiverse. There’s a dearth, you know, we talked about dearth of research earlier.
If you want to find any kind of academic research looking at, let’s say, having a sensory or physical disability and having a high IQ, sometimes known as being gifted or talented, good luck. It doesn’t exist. If you want to find information on having a learning difference and having a high IQ, or having other kinds of gifts or talents, it doesn’t exist. And so there’s also this real absence of research or absence of understanding when it comes to intersecting identities, when it comes to disabilities or differences, and being neurodiverse. And I think that contributes to the stigma that if you receive, let’s say, accommodations in your education, that you must be on the left side of the bell curve when it comes to your intellect, and that’s just profoundly untrue.
Various participants: Yeah.
Ranga Jayaraman: Steven?
Steven Kapp: I agree with Daniel. And, to further Eric’s point, when the work group that was revising the diagnostic criteria was working on the current diagnosis, they publicly admitted that the [autism] criteria work best for five to eight-year-old white boys. So there’s age, gender, and race there. And so, just the different ways people’s life experiences and the criteria don’t account as well for how people may, you know, people who are not, let’s say, cisgender boys and men, how they are more likely to mask, and also different cultures and their attitudes.
And the criteria emphasize social communication, but obviously social norms differ by cultures, and the criteria, the tests used are not adapted well enough for different cultures. For example, in some East Asian cultures, it might be rude for children to make eye contact with elders. And some other cultures. And yet a child not making eye contact is seen as sometimes a sign of autism. So, we definitely need cultural competence and to view intersecting neurodivergences and disabilities as well, as Daniel was saying.
Khushboo Chabria: That’s a great point.
Ranga Jayaraman: And Shannon, you wanted to add to…
Shannon Des Roches Rosa: Yeah, yeah. I’m so glad that Steven mentioned cultural competence because that is one of the things I wanted to make sure that people know. Because people sometimes think that if you just translate your autism and neurodiversity info into another language, then that’s all you need to do and it’s fine. But you actually, you absolutely have to be culturally informed about the way that you are presenting your information to people, because otherwise it might not land in the same way. Roy Richard Grinker’s book on mental health around the world and the history of mental health is called “Nobody’s Normal.” It’s a great read on this. I highly recommend it.
The other thing I want to say is that it’s really important, what Daniel was mentioning about the bell curve, about how people make assumptions about disabled people and their intellect. It’s really important to emphasize that you can’t have neurodiversity without intellectual disability, right? And so, one problem we have is what Julia Bascom—who just recently stepped down as the executive director of the Autistic Self Advocacy Network—calls Dangerous Assumptions, which is that people will sometimes find out that their children whom they thought that had intellectual disabilities actually have great intellectual capabilities, but what they did have was a communication disability. And so suddenly they start saying, it’s a miracle, and they start celebrating their child. And you know what Julia says is, the issue is not that your child now has access to communication, the problem is that you were dehumanizing your child in the first place [by thinking less of them for having intellectual abilities].
And so this goes back to what I was saying before, about how, we have to lift up everybody, right? But the thing is that there’s a problem, like Daniel was saying, people with really significant or obvious abilities are, are they are too often underestimated. And so you have somebody like my son, who has significant disabilities, and so too often are not given any opportunities to succeed. Their opportunities for success are limited. So somebody like my autistic son, whom Steven and John have hung out with, he has a lot of skills and talents. But I don’t even know if he was in another household, or in an environment where, you know, his parents hadn’t been fully informed by autistic adults in the neurodiversity movement, if we would even be in a position to recognize the things he’s capable of. And so I think when we’re dealing with our intersectionality, you know, we need to be culturally competent. And that includes understanding the experiences of people with communication and intellectual disabilities.
Eric Garcia: John, I feel like you would empathize with this. It kind of reminds me, sorry, Daniel, I’ll defer to you.
Daniel Hodges: Yeah, I was just gonna jump in on that. I mentioned being a law grad, earlier in my introduction. But I think it’s important here to pinpoint that that was not, quote-unquote, supposed to be my destiny, growing up. I mean, I wasn’t assumed to be someone who was going to really contribute, or graduate, or do anything based on my disabilities. And it wasn’t until early adulthood that I started to break away from those influences that were grossly underestimating my potential, and started to get toward a path where I started to strive further and further. And I would say, even at 39, I’m still finding new ways to do that. But it’s a challenge that we don’t often talk about enough.
And I think, like Shannon was saying, we look at some of these things as though they were set in stone. We also look at them as though they were more comprehensive than they are. I mean, there are some gaps in my skill set, as there are with every human’s. But I feel like sometimes when you have that identity as having a disability or being neurodiverse, people point at gaps in your skill set and say, “Okay, well, you know, they have this, so they can’t do that.” And therefore, we assume they can’t do these other things. And it’s like, wait a minute, yeah, I have things I do less well than other people. I also have things I do exceptionally well. Guess what? That’s part of being human. And the more we learn to recognize that, the more we will be able to create the kind of environment where everyone is able to really engage on their own terms and in the best way possible.
Ranga Jayaraman: So, I’m looking at time, so probably we need to start descending down towards closing the session. So many interesting and important topics have been brought forth and touched on. And I’m not going to do justice to all of them. But there’s some things that are really very key that I’m resonating with.
There are inherent human rights that are not conditioned upon a perceived economic value of the person. And that has to be, that has to be there, that has to be reinforced. There are, pretty much everyone has talents and abilities, that it requires an environment that is capable of both recognizing and nurturing it, such that that individual can find expression for those abilities in whatever setting. It could be social, or educational, or employment settings. They have inherent value, and they have inherent abilities. And there needs to be that kind of nurturing environment that recognizes and fosters and supports that to find expression.
In terms of people, we have a long way to go in terms of addressing the issue of lack of factoring in dimensions in diagnosis, dimensions in terms of supporting of people. There’s issues from a policy point of view, of how much energy and effort and dollars are really even going into looking at lifespan issues, and figuring out ways to again enable people to lead, in the way that makes sense to them, fulfilling lives. Um, it’s a lot, a lot of you know, incredible, incredible set of topics. And on the Slido question, there are actually a very large number of question that we have not had the time to sort of touch upon.
For the sake of the LinkedIn audience, I want to tell you that Khushboo, John, and myself will be reviewing all the questions that we did not have a chance to touch upon. And we won’t promise that all the topics that have been brought forth today will all find a place within the book, but we are going to try to figure out any way at all we can incorporate into the book as many of these aspects that have been brought forth by the panelists, as well as people that are attending the LinkedIn Live. We’re going to try to incorporate them as best as we can.
And I want to, from the bottom of our hearts, thank the panelists for taking time out of their precious day to come and spend the time with us. I want to thank the over 37 people that assembled in the LinkedIn Live to listen to us for any length of time that they could afford and provide input in terms of these questions and topics. We are deeply, deeply grateful. And I think together, I think we can all make this movement gain greater and greater momentum towards a more inclusive, more neuro-inclusive, more inclusive world in general. So thanks to everyone. Thank you all very much.
And Shannon, Eric, Steve, Daniel, our deepest gratitude to you guys for agreeing to be part of this session. And who knows, maybe this is a prototype of things that we can do going forward on maybe more focused topics, where we involve the audience and also bring some people to sort of weigh in on what the thoughts are. So thank you again, very, very much. Thank you, thank you.
Okay, I’m going to end the stream at this point. Thanks, y’all, for the opportunity. And again, so many, so many deep, deep-felt gratitude and thanks to you all. And as the book progresses, we’ll definitely be reaching out to you all in terms of what is the best way that we can make it accessible, available to as broad a swath of society as possible.
