Tuesday, November 30, 2021

UC Davis Neurodiversity Summit 2021: Debate on the Neurodiversity Movement, with Shannon Rosa and Matthew Belmonte

Earlier this month, our senior editor Shannon Rosa was invited to participate in the 2021 UC Davis Neurodiversity Summit, on a panel debating the role of the Neurodiversity Movement in supporting and including autistic people with intellectual and communication disabilities. The panel was moderated by Dr. Susan Rivera and also included Dr. Matthew Belmonte, a neuroscientist and autism researcher. The two panelists agreed more than they disagreed, as you can see by either watching the video or reading the full debate transcript below. 

The full conference included autistic people with intellectual disabilities and/or who communicate via AAC, on panels such as a Discussion on Experiences of Discrimination and Stigma, and Autism, Communication and Agency, and is worth your time. 

Headshot photos of Shannon Rosa, a white woman with red hair and glasses, and Matthew Belmonte, a white man with Picard hair and a beard, next to their short bios:  "Shannon Rosa is the senior editor of Thinking Person's Guide to Autism, an autism information and advocacy nexus. She's the parent of a high support autistic son. Her writing can be found in The Washington Post, and Spectrum News, among other places. She lives in California with her family."  "Matthew Belmonte is a neuroscientist, and is brother and uncle to two people with autism. His research has explored the brain physiology that underlines autistic cognitive traits in people with autism spectrum conditions, and their family members, and in the general population. He has written both on treating and curing autism as a disease condition (narrowly and classically defined), and on recognizing and accommodating autistic traits and insights broadly construed."
[image: Headshot photos of Shannon Rosa, a white woman with red hair and glasses,
and Matthew Belmonte, a white man with Picard hair and a beard, next to their short bios.]

Dr. Susan Rivera: We're going to have a debate on neurodiversity between two individuals: Shannon Rosa, and Dr. Matthew Belmonte. And I have the honor of moderating this discussion. So, let me first introduce our two conversants. And before I do that, actually, I just want to say that this is going to be a debate that's really critical to the main point of our neurodiversity summit this year, which is to really think deeply about the extent to which the Neurodiversity Movement has been inclusive and supportive of the interests of people with intellectual disabilities and non speaking autistic people. And generally, those neurodivergent people who might require a higher level of support—and inclusive of all. 

So to that end, we'll be, as part of this discussion with Shannon and Matthew, exploring why people might be skeptical about the neurodiversity movement. So we wanted to give you a bit of a trigger warning that some of these ideas could be upsetting, and we really need to be able to accept both the excellence and the challenges that come with neurodivergence. So that's really what we are about today. 

With that, I'll go on to talk to introduce our two conversants before we start with the questions. First, Shannon Rosa, her pronouns are she/her, is the senior editor of Thinking Person's Guide to Autism, an autism information and advocacy nexus. She's the parent of a high support autistic son. And her writing can be found in The Washington Post, and Spectrum News, among other places, and she lives in California with her family. 

And then our other conversant is Matthew Belmonte, pronouns he/him. He's a neuroscientist, and is a brother and an uncle to two people with autism. His research has explored the brain physiology that underlines autistic cognitive traits in people with autism spectrum conditions, and their family members, and in the general population. And he's written both on treating and curing autism as a disease condition (narrowly and classically defined), and on recognizing and accommodating autistic traits and insights broadly construed. 

[video: Zoom panel of this discussion.]

Thank you very much, Shannon, and Matthew for being a part of this really important discussion. So I'm going to go ahead and start in with the questions. And first, what I want to do is ask sort of a stage setting question. So and it's a real simple one: What does the neurodiversity movement mean to you? And Shannon, I'd like to put that question to you first.

Shannon Rosa: Thank you so much for having me. Again, I'm the parent of a high support autistic son, which means that my son is mostly non speaking and requires 24/7 care for his best life. So neurodiversity, to me is fairly straightforward. It just means that all different kinds of brains and cognitions belong to people who have rights and deserve rights. Meaning that everybody matters, and that nobody deserves to be dismissed because they may present differently because of the way their brain works. And we've already had many different examples of that [in previous summit panels], and people advocating for neurodiversity today.

Dr. Susan Rivera: Thank you very much, Shannon; and Matthew, how would you respond to the question of what the neurodiversity movement means to you?

Dr. Matthew Belmonte: Thanks, Susan. And thank you, Patrick and everybody listening for being part of this. I think, you know, like with a lot of things with autism, there are at least two ways to define or to perceive it. And the essential construal of neurodiversity is just that it's about human variation and cognition, perception and action. And the fact that everybody, anywhere on that spectrum has value. I don't think anybody could argue with that. I think the term "neurodiverse" also has acquired a categorical meaning, though. Where it's applied to individuals as a differentiator, rather than to populations or societies as a unifier. And it's that second sense that can be problematic when it's combined with a certain Pollyanna rhetoric. But I think we'll get into that.

Dr. Susan Rivera: I think we will get into that more in the discussion. But thanks to you both, because I think just having that sort of "what it means to you" be part of the how we start our discussion is going to be helpful. Shannon, did you want to respond?

Shannon Rosa: Yeah, I'm sorry, I actually responded with the definition of "neurodiversity," rather than the "neurodiversity movement." So, the neurodiversity movement means advocacy on behalf of people who are neurodivergent, who have different brains. And it's important for people to know that the neurodiversity movement is informed by the disability movement, and specifically by the advocacy of people with intellectual disabilities who were formerly institutionalized. So by its very origin, the neurodiversity movement is inclusive of people of all abilities, speaking and non-speaking, intellectually disabled, and non-intellectually disabled—and I think that that is something that sometimes gets overlooked when people focus on the advocacy of neurodivergent people who are perceived as having lower support needs.

Dr. Susan Rivera: Thank you. That's really important, grounding. I appreciate that. The second question I'd like to ask is to really start to get into it. So I want to ask each of you to give your perspective on why some people are opposed to the neurodiversity movement. And, Shannon, let's go ahead and start with you again.

Shannon Rosa: I think it's really easy to understand why people might have a skewed perception of the neurodiversity movement, because I am a parent who is not autistic. I came from outside of the Autism and neurodiversity communities. And since I have a child who's very high support, I saw all these people whom I perceived as advocating and living independent lives, and couldn't understand how they had anything in common with my son, as autistic people—like, how could they be the same? 

But as I interacted more and learned more about the experience of autistic people, I realized that not only do autistic people have commonalities—though of course, every person is an individual—but all autistic people have commonalities that they share with my son, whether it is a love of sameness or social difficulties. And the fact that somebody may present as not having any disabilities in person, because they can "pass" doesn't mean that they don't have the same kinds of meltdowns as my son, doesn't mean that they don't have the same kind of sensory processing difficulties as my son, it doesn't mean that they aren't completely able of shutting down and not being able to speak the same way as my son. 

And so I think it has to do with the fact that this kind of diversity is not portrayed accurately in the media. I think that the media loves stories of people who are succeeding by their terms—not on disabled people's terms, but on the mainstream media's terms. And I think that they also love stories about—or I should say, not love, but prioritize stories about—people who, as is perceived often with people like my son, as "suffering." 

When what is really happening is that because people don't have access to the insights of autistic people, because parents perceive them as not having anything in common with their children, [families like mine are] actually cut off from the supports that could make their lives easier and could actually prevent a lot of the suffering that we see in these kind of sensationalized stories about autistic people. I'm not saying that people don't have difficult lives, because I understand that very deeply how things can be difficult. But I'm saying that the perception is so black and white that we don't have a real sense of the complexity of neurodivergent existences and how they interrelate.

Dr. Susan Rivera: Thank you, Shannon. Matthew. I'm gonna push this over to you. Now. Why do you think some people are opposed to the neurodiversity movement?

Dr. Matthew Belmonte: Well, again, yeah, it depends on how one construes the neurodiversity movement and at its core, and I think perhaps in a more original and essential and true definition, which Shannon voiced beautifully, I don't think most of the people who are opposed to it would actually be opposed to it. What I think does go wrong, as, again, as Shannon said, is "media amplification" and it leads to a sort of warping of what the neurodiversity movement is. 

And I will confess, you know in the past couple of decades, you know, hearing and meeting media stories about people speaking in terms of neurodiversity, it really has been alienating for my family because my brother is non speaking. My niece is not particularly communicative. She speaks, but it's difficult. And I think that there is this perception from what gets amplified in public, that the people who speak in the neurodiversity movement are speaking on behalf of the people who can't speak. That's not entirely true. But what gets put out there, what gets amplified presents that image.

Dr. Susan Rivera: Thank you very much, Matthew. And it's telling that both of you sort of highlighted the role that the media plays in what is sort of misrepresenting in some cases, or at least sort of biasing how the neurodiversity movement is represented. 

So now, a question that also sort of gets to the heart of the matter. I want to ask you, if you think that the concept of a "cure" is opposed to the neurodiversity movement? By that I mean, most likely a cure to autism, which is how it's usually thought of, but you might think of cure in a broader sense. So is that concept in opposition with the neurodiversity movement? Shannon, we'll start with you again.

Shannon Rosa: Okay. I think that this is a really complicated question (like most of the things that we're discussing). I don't think a cure for autism is a realistic thing given that autism not like Down syndrome, or Prader Willi, where there's a specific genetic fingerprint that we can use to say "okay, this is what causes this condition," right? So just starting from the very basics, [a cure for autism] is not realistic. 

But a cure for autism itself is opposed to the ideals of the neurodiversity movement, which is about, again, accepting people and understanding people of all different neurodivergencies—if we're focusing on purely the definitions of autism itself and not on any coexisting conditions like epilepsy or GI conditions, which are often the things that we hear people talk about that they want cured. I think that there are things a lot of people who are autistic themselves would say that they want cured, like debilitating anxiety, or debilitating depression—but those things are not intrinsic to autism. 

And overwhelmingly, when you actually talk to autistic people themselves—which is what I do all day long as the editor of Thinking Person's Guide to Autism, which is a nexus of hundreds of thousands of autistic people, professionals and parents and a lot of people who are all three or combinations thereof—autistic people do not generally want a cure. And if they DO want a cure, it is often because of the poor way that they are treated as autistic people. 

And we heard a lot about that today already, about [autistic] people who are not being treated like human beings, they're not treated as though they understand what's going on. They're not treated as though they matter or they listen, or they're conditioned to believe that they don't deserve the same rights as other people. Or they really want to have relationships with people and those relationships are not happening—or they're conditioned to think that they deserve relationships with people but are not taught how to actually form relationships—you know, there's so many functions. 

None of those things are intrinsic to being autistic. And so I think that yes, the idea of a cure for autism is counter to the ideals of the neurodiversity movement. But the reasons why people want a cure, and what they mean when they talk about a cure are very complicated. And so we have to listen to what people are saying when they talk about why they want a cure.

Dr. Susan Rivera: Thank you so much, Shannon. And Matthew, I want to hear your response to the question of whether the concept of cure is opposed.

Dr. Matthew Belmonte: I'd love to. You know, I think a lot of people do see it as opposed. And I respect Shannon's viewpoint. I see it the other way, I see it as entirely consistent with the essential definition of neurodiversity that I started off with. And I think that the difference really has to do not with any fundamental difference, but with what really what we mean by cure, what we mean by autism, and what we mean by neurodiversity. So maybe I can try to unpack that. 

I mean, I talked about the categorical meaning that the the term neurodiverse has acquired. You know, to me, it doesn't really make sense to talk about a neurodiverse person, I think, you know, we're talking about a neurodiverse population, a neurodiverse society, and every individual is somewhere on that multi dimensional curve, right? That distribution of different brain and cognitive traits. 

So when I grew up with my older brother, autism was something that was rare. It was something that was pretty consonant with—or mapping onto—what a lot of people now have come to be calling profound autism. And what really differentiated me and my brother was his issues connecting intention to behavior, and his inability to speak. I mean, we were both fascinated with sensory patterns. We both lined up things in order of size or color. Well you can see I'm rocking now, I'm a little nervous. But, you know, we had a nervous habit of flapping a little, we couldn't recognize new faces immediately, we didn't like to look into people's eyes. So he was "autistic," I was "shy", right? I don't think that anybody talking about curing autism is talking about "curing" a love of sameness, or "curing" a social unconventionality. That's not the issue. 

What the issue is, is if one has a brain that cannot connect one's intention to one's behavior in the moment, that can be very frustrating. If one has a brain that cannot connect one's thoughts, or flexible communication, that is very frustrating. Now, some people may treat those as support needs. I treat them as autism. That's what I want to cure. In that view, what would one be left with if one were to cure autism? While I think one would be left with a truly neurodiverse population, that would be composed of individuals that would feel in charge of their own perception and body movement and thinking and who would be able to share their unique insights with everybody else through communication. And I stand by that ambition.

Dr. Susan Rivera: I hear a lot of commonalities in what the two of you are saying in terms of the things that people wish to have "cured," if you will, would be the things that are causing them not to have their best life necessarily. And those things are not necessarily intrinsic to autism. They aren't a part of autism. I guess a follow up question to that would be, we talked a little bit about supports. So what should be the goal of supporting individuals? What's the outcome we should be aiming for there? Shannon, do you have any response to that?

Shannon Rosa: I think the goal for anybody—and again, this has been talked about before—is living a happy and contented life on their own terms. So I think that the goal of support should be making sure any disabling conditions that a person experiences are addressed. So for instance, for my son, that means he needs a calm environment, he needs a lot of communication support, he needs a lot of regularity, he needs things like visual schedules to help him know what his day is going to be like. Because if you have a communication disability and an intellectual disability, in his case, that involves a lot of anxiety over what's going on in your day, and what's happening to you, and we have to make sure he knows as much as possible about what his day is going to be like, to the best of anybody's abilities. 

And I think, most importantly, this involves an intrinsic understanding of autism, rather than an extrinsic understanding. It involves understanding what the autistic experience is like. And again, that's something that you can only get by talking with autistic people—it doesn't matter how much observation you do. So I think that any supports we provide for autistic people, whether they're our loved ones, or they are our clients, have to be autistic-informed. I think that, without using an expletive, I think if your supports aren't autistic informed, then they are, fill in the word. You're not going to be actually helping people. 

There are so many incredibly kind and thoughtful people who are involved in the field of autism advocacy and supports who aren't themselves autistic. My son has always had the kindest people around him—even if they don't necessarily understand why he's upset, they can tell if he's upset, and they do their best. But your best when you don't understand what autism means, isn't going to be enough.

Dr. Susan Rivera: Really important points. Matthew, anything to add to that?

Dr. Matthew Belmonte: I'm sorry, that was a little tangent. Can you remind me the question that we were asked?

Dr. Susan Rivera: Yeah, yes, of course. So I was just sort of saying what should the goal of support be? And what's the outcome we should be aiming for? Ultimately?

Dr. Matthew Belmonte: Yeah, well, I think it really goes back to what I answered before, in terms of what the ideal cure would be. So again, I would like to see people, well, I'm not sure how to choose my words here, whether you say people with autism, and maybe people with a residuum of autism, or people with Asperger's, or whatever. But I would like to see people able to share their insights, needs, desires, with the rest of the world. And I would like to see people with the agency, including the practical physical agency, to affect the world in the ways that they want it to move. And sometimes it's just a question of being able to move your body in the right way, you know, move your body in the way that you want it to, and at the time that you want it to. So these are the things that I think we really need to be working on. And I definitely concur with Shannon's point about the involvement of autistic stakeholders, because I will say that a lot of the autism research that has been done historically--Shannon, I'm going to use the word that you were thinking of, but wouldn't say--it's been bullshit.

Shannon Rosa: It actually isn't the word I was thinking of, but

Dr. Matthew Belmonte: Oh, okay. Well, sorry for speaking for...

Dr. Susan Rivera: Insert favorite expletive.

Shannon Rosa: Exactly.

Dr. Matthew Belmonte: So growing up with my older brother, I saw my parents bending over backwards to do these damn—I mean, for a while it was a low protein diet...one intervention, then another. And those things didn't generally do anything for my brother. What they did, is they generated papers. They generated academic promotions. And they were pretty good for I guess, for the people who were writing grant proposals. So I do think that we have to have a stakeholder involvement in setting the agenda. And that agenda should be a mix of the things that can come to immediate fruition to improve quality of life, but also the basic science about understanding autism more, so that we can get more things down the road. 

And to that end, I think that certain countries are ahead of others, when it comes to stakeholder involvement. And I always like to highlight the UK National Institute for Health Research, which actually has a requirement of stakeholder input, ideally, as part of the research team itself. The US I think, has some ways to go on that. But yeah, that's the direction in which I think we should be working.

Dr. Susan Rivera: Thank you. And I'm so happy and grateful that in both of your answers, the importance of autistic stakeholders being at the table and helping to shape and form, research and treatment came up. So thank you very much. The next question I want to ask kind of overlaps with a little bit of what we've been talking about. More specifically, we often speak about sort of medical and social models of disability, as though they're opposites and irreconcilable—as though we have to choose between focusing only on changing the person or only on changing the environment. And I want to know what your thoughts are about that. What do you think? To switch it up we'll start with with Matthew this time.

Dr. Matthew Belmonte: Okay. Well, yes, to draw a loose analogy, we're not going to stop doing research on say, spinal cord problems, just because we've installed curb cuts. And we're not going to do vice versa. "I'm going to stop with all your curb cuts, because we're doing research on spinal cord problems." So, it's a false dichotomy, isn't it? And I think at the same time, we can recognize that there are certain issues which are properly construed in a medical model, and as a deficit or disease. At the same time, we can accommodate those issues. And we can also accommodate all of the surrounding issues, you know, the things that aren't actually deficit disease, I talked about not curing a love of sameness and not curing social unconventionality. We need that stuff, because we need a diverse society. So no, it's a completely false dichotomy, and it actually does great harm.

Dr. Susan Rivera: Thank you. And Shannon, what's your what's your point of view there?

Shannon Rosa: I mostly agree with Matthew, as a lot of you will see that as this discussion is going on, we have more agreement than we have disagreement. But I think it's important to understand what the medical and social models mean. So the medical model views autism as a disability [meaning] a collection of deficits, whereas the social model, it says that it's the world that needs to change—in a nutshell. And I think that they actually both have places in the neurodiversity movement. 

If everybody would just remove their fluorescent strobing lights in the classrooms, then you'd have a lot fewer meltdowns for autistic kids, right? But then if the strobing lights caused that autistic child to have a seizure, I mean, yes, in that one incidence [removing the light] would fix things, but it doesn't change the fact that they have epilepsy and that they need treatment for epilepsy. And that's where the medical model comes in. 

So I think that we can't say that it's an "either or" is a problem, as it is, with almost everything that we're discussing. We have to talk about the complexities of all these issues rather than saying it's a binary. We absolutely need research into medical issues that affect autistic people. I want to know, for instance, why is it that my son has these intense sensory issues? It would be good to know if there's a mechanism for that, so that we can help him. But that doesn't necessarily mean "curing" him, that means understanding. 

I think the real problem, honestly, with the medical model for autism is that more than 80% of the research on autism right now is biologic and less than 10%, according the Interagency Autism Coordinating Committee's report, is on quality of life. And Susan knows this intimately since she's now on that board. So what we need to do is switch our focus to be more on the social model, and less focus on the medical model—not to eliminate it, but for there to be equity in addressing both of these needs.

Dr. Susan Rivera: Thank you very much, both of you for those great answers. I want to ask a slightly different thing now and again it overlaps a little bit with what we've been talking about. But it's kind of a pointed question. And that is, who should speak for neurodivergent people who cannot advocate for themselves, either due to age, whether they're too young, or due to communication barriers. So, Matthew, let me invite you to opine on that question.

Dr. Matthew Belmonte: Yeah, well, obviously, this has been a question that's central, for my family. The short answer is: whoever can be trusted to have their best interests at heart and who knows them best. And in the vast majority of cases, that is a family member. Either a parent or you know, when the parents are no more, a sibling. And in some cases, you know, it's another trusted person. But I don't think there's any substitute for that familial closeness and love and that unspoken understanding. I mean, when my brother and I were, you know—when he was sifting sand through his fingers, I knew exactly what he was feeling: that each individual grain and the uniformity of them all put together. Or when we were both staring at shadows rising and falling under street lamps. It was that regularity and, that comfort and, there's that sense of "yeah, okay, I get you." We don't need to say anything. "I understand what you want. I understand what you need. I feel your feeling." I don't think anything really can substitute for that family connection. 

And I think that in most cases, a family member is the one who should be speaking (with information from all available sources) when the person, unfortunately, despite best efforts, and because of current technological limitations, cannot speak for themselves.

Dr. Susan Rivera: Thank you, Matthew. Shannon, what would you say to who should speak for neurodivergent people who cannot advocate for themselves?

Shannon Rosa: I would say it depends on if we're talking on a broader level or an individual level. Of course, I do not disagree with Matthew—I mean, the thing is that whereas autistic people know autism best, parents tend to know their children best, or their loved ones best.

But again, if you don't have an understanding of your [autistic] child's experience, it can be hard to be the advocate that they need. And in this case, when we're talking about the needs of autistic people as a population—non speaking and communication-disabled people as a population—we have a lot of people in the community who have those traits and who are able to speak on those conditions. And also, a lot of autistic people have been non speaking as children, and they have developed speech later on (whether it's through AAC or gradual, verbal spoken ability). So, I think that we have to know who we're talking about. 

I also think there's a real problem with the way that people speak about neurodivergent people like my son, because too often, the permission is given to be "honest" about the difficulties that they experience without having any respect for their privacy. I mean, I understand how parents can feel like they don't have anybody helping them and how they have to talk about how things are to get attention paid to the needs of their non speaking children. 

But they could also actually listen to the neurodiversity movement, and advocates, about the things that [their kids] need. For instance, the Autistic Self Advocacy Network's Executive Director Julia Bascom spoke very eloquently at the last Interagency Autism Coordinating Committee meeting about the need to advocate for mental health on behalf of people with intellectual and communication disabilities. 

So I think that if we don't have [autistic] insights, we can't advocate for our [autistic] loved ones as a whole, but, of course, as individuals, we are going to advocate for our individual loved ones.

Dr. Susan Rivera: Thank you both. You know, I think something from the Q&A is really relevant to what both of you were talking about. One says, "Many families are dysfunctional." So you might be good advocates for your family members, but they liken it to gay conversion therapy; family can sometimes be the problem. And of course, this is a reality that we all have to be aware of. And so I wanted to infuse that comment from the Q&A, but also just wondered if either of you had a response to that?

Dr. Matthew Belmonte: Well, if I may, that's certainly true. And and that's why I said in most cases, that's why I qualified it. Yeah, tons of autistic or non autistic people have screwed up families. But in most cases, their families are trying to do the right thing, even if they're under a whole lot of stress.

Shannon Rosa: Yeah, I agree. And I would also say that I think a problem that we don't talk about enough and that Matthew has alluded to a little bit is that a lot of times, autistic people, they don't spring from nowhere, right? A lot of times we have autistic parents or autistic family members or we see a constellation of traits in the family. And so kind of counter-intuitively, being autistic can actually make it harder to be around another autistic person or to be a caregiver for another autistic person because of things like competing access needs (like one of you needs to be loud, the other one needs quiet) or executive functioning issues where it's really hard for you to manage all of the schedules and routines and everything for another person. 

And then the other thing is that again, because we don't have these autistic-informed resources to help parents support their autistic children, a lot of parents do not know how to support their kids, and they see them as a project or a problem rather than as a human. And their lives are very, very hard. They are harder than they need to be. I'm not saying that "if you listen to autistic people, it will be a magic wand and there will be fairies running around and everybody's life will be wonderful". That is not what I'm saying. But if we have more patience and listen to autistic people about what our kids need, then all of these families can be a lot happier. Because you know, a family is only as happy as its least happy member, right? So if your autistic loved one is unhappy, everybody's going to be unhappy. And that's not how any of us want to be.

Dr. Susan Rivera: Thank you both so much. I'm going to follow along now and take some more questions from the Q&A. One is, "What do you all think of the fact that, if I'm correct, the term autism was defined in the context of the medical model, which comes from a deficit framework. Similarly, ADHD, which I have..." so says the the person making the comment "...was also defined in a deficit context? Can that coincide with the neurodiversity movement?"

Shannon Rosa: Yes. [laughs quietly]

Dr. Susan Rivera: Any challenges with that coincidence?

Shannon Rosa: I mean, it comes from the DSM, which is basically a collection of deficits: "These are the things that are wrong with you." And, trust me, there's a lot of ADHD in my family. So knowing that you have a disability is one thing, and knowing how to support yourself as a person with a disability is something else. And that comes from the social model, usually.

Dr. Susan Rivera: Thanks, Shannon. Matthew, anything to add to that?

Dr. Matthew Belmonte: Yeah. With regard to autism in particular, we've been suffering from an insufficiency of terms. And as I said, you know, back in the 1970s, autism was this this "rare" thing, and it really, rather maps on to what people these days want to call--some people these days want to call--profound autism. And in those instances, the deficits are quite frank, and I think incontrovertible. If someone doesn't have the ability to speak, or doesn't have the behavioral or cognitive control, that's pretty clearly a biological brain issue—a medical issue. But autism has come to be something so broad, that these days when we use the word, it seems to me not to fit because the word is coming, as Shannon said, from the DSM. From this catalogue of things that are by definition, "disease states." And I think that a lot of people diagnosed with autism these days, especially in light of DSM 5, where everything's been mushed together, really don't have what I would consider to be a"disease state." A lot of people diagnosed with autism these days have a difference that should be fully (or at least mostly) the subject of accommodation.

So I'm not sure where I'm going with that. But just to say that I think a lot of the controversy here comes from the fact hat the terminology is so insuffcient, and historically has been quite slippery. And we now find ourselves in this weird circumstance where we're using what is definitionally a disease label to describe an aspect of human cognitive diversity, which I don't really think is appropriate. I think the whole thing needs to be reframed.

Dr. Susan Rivera: Matthew, there's something in the Q&A that I think is a bit of a tough one for you, but I'll read it directly. "As a speech language pathologist, I would agree that treating something like communication difficulties is important." And I don't think the neurodiversity movement is opposed to that. But this person says, "...I'm curious as a non autistic person, why insist that this constitutes a 'cure', when many autistic people have expressed that this wording is hurtful, so why not advocate for the interventions that help with the specific challenges you've highlighted without using terminology that can be hurtful?"

Dr. Matthew Belmonte: Thank you for the comment. I really don't intend to be hurtful. I'm sorry, if it has that effect. I guess where I'm coming from, is looking at the example of autism that I grew up with, it's very difficult for me to abandon the ambition of curing that (and again, you know, please take on board what I mean by cure). Again, I think this is an xample of terminological insufficiency, both in terms of the slipperiness of what different people mean by the term "cure," and also the slipperiness of what different people mean by autism or what people mean--what people construe as essential, rather than co-occurring features of autism. I really don't understand immediately--I don't know immediately, how to deal with this. I resist abandoning that ambition, because it feels like shortchanging my family, actually. I don't know what to do about it. I do take your point.

Dr. Susan Rivera: Thank you so much for that answer. Matthew, I really appreciate you giving us that very heartfelt perspective. I do appreciate that. This might be one of our concluding questions from the Q&A, as we're we're starting to wrap up time-wise. But if we have more time, we'll take more. And there is one that says "Can anyone suggest spaces available for casual conversations to bridge the gap between ASD researchers and stakeholders that goes beyond this summit?" 

Shannon Rosa: Well, again, I'm the senior editor at Thinking Person's Guide to Autism. And we publish articles frequently on research. We have one at the top of the page right now that's on the Spectrum 10k project from a bunch of autistic autism researchers. We have a very active Facebook community. We have a very active Twitter community. And we also sponsor an event at every in-person INSAR (The International Meeting For Autism Research) called AutINSAR, which is a Twitter chat that is literally between autistic people and autism researchers, and many of whom are both. So if you need any of those resources, please let me know. So if you follow Thinking Persons Guide to Autism, or you write to us at thinkingautism at gmail.com, I can get you all these resources. And of course, there's always the participatory autism research efforts.

Dr. Susan Rivera: Thanks, Shannon. Matthew, I see you've put something in the in the chat for everyone to see.

Dr. Matthew Belmonte: So I want to I want to put in a plug for my friend Jonathan Drury's project "Autism Dialogue." It's something that I participated in, and it has contributed a lot to my insight and to my I guess, my ability to inhibit quick and ill advised thoughts. So this is something that that follows the model of "Bohm dialogue," if you're familiar with that. And it is a dialogue amongst people who identify as autistic or autism spectrum, and people who have a professional or personal stake in the community. And it is really a very nice alternative, sort of the opposite side of just yelling at each other on Facebook.

Wednesday, October 27, 2021

Spectrum 10K and Cognitive Dissonance in Autism Research

The Thinker, Rodin
 Photo by AndrewHorne, Public domain, via Wikimedia Commons
[image: A photo of Rodin's sculpture The Thinker, which is a naked
man sitting on a rock, hunched over with his head resting on his encurled fist.]

Mary Doherty

Spectrum 10K, the largest study of autism in the UK, was launched on August 24, 2021 amid a flurry of media attention—only to be paused less than three weeks later following an outcry from the autistic community (of which I am a member.) Concerns were raised around ethics and data management, but the primary issue is the potential use of such research for eugenic purposes.

I am peripherally associated with the biomedical autism research community, as a member of the AIMS-2-Trials Autism Representatives Steering Committee, and ECRAN, the associated early career researcher network. My involvement in such a controversial project stems from my desire to potentially influence the research agenda for the benefit of the autistic community: Many autism researchers have never known an autistic person, except as a research subject, and interacting as professional peers has been illuminating for many. (My perspective is outlined in a talk given at an ECRAN workshop in 2020 entitled Stigma and Unconscious Bias.)

As a medical doctor—a consultant anaesthetist—my knowledge of autism genetics and genomics research is basic. I mix up the terminology, and watch colleagues wince when I say genetics instead of genomics, although I know the difference. (I experience the same automatic wince when researchers use person-first language or misuse the term 'neurodiverse.')

My own research interests focus on healthcare access for autistic adults and issues facing autistic medical professionals, therefore I bring a range of perspectives as I consider my response to Spectrum 10K. I have sufficient knowledge of the current autism research agenda, the history of autism, and current advances in reproductive medicine to be seriously concerned about this project and similar research underway worldwide.

On the one hand the Spectrum 10K team states their values on their website, including a clear anti-eugenics stance:

“Spectrum 10K is anti-eugenics. To be precise, we do not work towards or advocate for termination of pregnancy in relation to a foetus who may later be diagnosed as autistic. We are aware of and abhor the awful history of eugenics, including how science has been used to justify many atrocities globally.”
On the other, this project is basic science dressed up as helping autistic people with co-occurring medical conditions. But ultimately it is a genomics project which will add to the evidence base around polygenic scores (PGS) for autism. These polygenic risk scores for medical conditions are already being used to select embryos during in vitro fertilization (IVF). There are already toddlers in this world who were selected as embryos based on polygenic scores for various medical conditions; the implications of this new direction in reproductive medicine were recently discussed in a leading medical journal. Such a test is not available for autism yet, but we have to ask if this is where the research is leading?

As for the AIMS-2-Trials, it is an international consortium of research teams and industry partners who are “exploring the biology of autism to tailor treatments and develop new medicines” and who also claim to oppose eugenics: “AIMS-2-TRIALS is not developing a genetic test and is ethically opposed to eugenics. It is also unlikely that a genetic test will ever be specific or accurate enough to predict whether a person will develop autism.”

While Spectrum 10K and AIMS-2-Trials are separate projects, there are researchers common to both. And both stake their anti-eugenics positioning on the expectation that a genetic test “specific or accurate enough to predict whether a person will develop autism” is unlikely. But are such claims disingenuous, given the current move towards using polygenic risk scores in reproductive medicine?

While such possibilities are denied, a preprint from a Spectrum 10K research team suggests otherwise. This study, not yet peer reviewed, suggests that polygenic scores (PGS) correlate with clinical profiles, and appear to show an apparent protective effect of autism PGS on co-occurring developmental disabilities. (This means that common genetic variants associated with autism are less likely to be associated with co-occurring intellectual disability, but ‘de novo’ or rare high impact genetic variants are more likely to be associated with intellectual disability.)

Recent and related discussions with leaders in the biomedical autism research field has led me to the astounding realisation: The possibility of paving pathways for eugenics may not be simply inadequately considered, but not considered at all. There is no attempt to hide the search for stratification biomarkers (biological features which can be used to group autistic people into subtypes), and it is unclear what the research community expects to be the outcome of such work. 

I have no doubt that the individual researchers I have encountered are well-meaning and sincere in their desire to positively impact the world. However, there appears to be a total lack of awareness of current reproductive medicine practices' bias against neurodivergent people, never mind the implications. For example, autistic people or even those with a family history of autism are currently prohibited from acting as sperm donors for IVF, with sperm banks subject to legal action for failing to prevent autistic children being born. Since 2013, it is accepted practice in Western Australia to use sex selection during IVF to reduce the likelihood of an autistic child (sex selection is not allowed in general, except where there is a history of autism).

Additionally, there is the ever-growing list of conditions that can be detected by preimplantation genetic diagnosis (PGD) and therefore prevented. Given the stigma associated with autism, and the focus on costs attributed to potentially life long care needs, the desire to add autism to that list seems to be driving much of the current research agenda. 

Also, a recent, questionable paper by Blaxil et al claims that the increasing costs of autism poses a “serious threat to the economic future of the U.S,” and the authors propose a prevention strategy, citing a lack of evidence for reduced costs using an intervention strategy. Their “prevention” scenario assumes that strategies and opportunities are already “used by wealthy parents to lower their children’s risk of ASD” and suggest these “can be identified and made available rapidly to lower income children and ethnic minorities.” Criticisms of the paper are currently under consideration, but nonetheless, it was peer reviewed and published in Journal of Autism and Developmental Disorders.

So we know that society, if given a chance, will prevent us autistic people from existing. We know it is happening already, as detailed above. Is it possible, is it credible that biomedical autism researchers at the cutting edge of autism genetics research are genuinely unaware of developments in allied fields? Is this a result of working in silos, in which scientists are so isolated from those in other disciplines that they have no idea of how their works might intersect or overlap?  

Spectrum 10K and similar projects will inevitably lead to polygenic scores being used to select for or against autistic people, particularly as data sharing alliances increase across the world. Therefore, as work on differentiating between groups of autistic people using polygenic scores and stratification biomarkers is ongoing, the obvious question arises: Is this an attempt to select for those who may be deemed useful, while preventing others with more complex needs from existing? 

This is the essential question, the proverbial elephant in the room, as stratification is the subject of much current autism research. Yet this is not a straightforward quest. While on a superficial level the challenges associated with autism may appear to be split into separate "functioning" categories, the reality for autistic people is much more complex and fluid. Those who are familiar with the autistic world know this, yet the search for a genetic basis on which to segment our population continues.

Many autism researchers, however, are unfamiliar with the autistic world, and seem to assume that autism is to be avoided or prevented, even if it’s no longer considered acceptable to use the word “cure.” Or do researchers only avoid using that term in autistic company? What about in labs where autistic people are excluded, or forced to remain incognito? I hear valiant efforts to use appropriate terminology in spaces where we are known to be present, only to hear the same professionals revert to person-first language and functioning labels once back in the apparent security of their professional sphere. Are the considerations being shown to autistic concerns in Spectrum 10K and other autism research realms merely performative? 

There is a cognitive dissonance that arises from the contradictions inherent in stating “we do not want a prenatal test for autism to be developed," while simultaneously producing basic science which will inevitably lead to that outcome. As an anaesthetist, that is akin to saying I don’t want patients to be aware during surgery, while failing to administer anaesthesia. The inherent contradictions in this positioning are baffling. How is it credible that scientists working in this field are unaware of these developments in the wider field of reproductive medicine, as appears to be the case? 

The alternative is that they are aware but are being disingenuous, and I don’t know if that is worse. I also have no clue whether individual scientists are being honest or not. It’s likely that there are some in either group. Is it possible that some within the biomedical research community are well-meaning but na├»ve, and also being manipulated by those with darker motives or commercially driven intent? Or are they so compartmentalized in their thinking that they see no inherent conflict in pursuing autism genetics research while espousing an anti-eugenics stance? 

While ethical issues in genomics research are common across all specialties, medical conditions are generally acknowledged to be worth preventing. Curing cancer is in no way akin to eugenics, but autism is different. Autism is not an illness, and autistic people have the right to exist. Our community has already been the target of eugenics, such as Aktion T4 in Nazi Germany and the paediatric euthanasia programme at Am Spiegelgrund. Hans Asperger, once lauded as a hero, is now hated by many, following revelations he condemned to death those children considered to be unbearable burdens to their families. Yet how can those who exhort us to “learn from history and not repeat its terrifying mistakes” fail to appreciate that their current work may lead to similar outcomes? Do they genuinely differentiate between active killing of those autistic people deemed unworthy of life, and prenatal prevention? 

Or is this the hidden agenda? Is there a tacit understanding among scientists that the actual goal is in fact to prevent the births of those deemed "undesirable," while keeping those who might contribute to society? My heart breaks at this thought. Is there societal support for this potential outcome, driven by the cost of care needs?

Scientists being unaware of the potential for harm unleashed by their work being used in unanticipated ways is not new. Scientific regret is well documented, as exemplified by Oppenheimer, Einstein, and even Nobel, as regret was the catalyst for establishment of the Nobel Peace Prize. But the scientists involved in Spectrum 10K cannot claim ignorance. They have been told, loud and clear by the autistic community, from the earliest days of EU AIMS, Aims-2-Trials and since, culminating in the outcry over and boycott of Spectrum 10K.

Spectrum 10K is currently paused to “co-design and conduct a meaningful consultation.” The approach of setting a research agenda, then including autistic people in a tokenistic manner—as with AIMS-2-Trials A-Reps—is no longer sufficient. The autistic community, including autistic researchers and scientists, must be involved at the highest levels when decisions are made regarding the autism research agenda. We cannot be kept busy with token consultations while the real decisions are made elsewhere.

The gulf between the biomedical research and the autistic communities is far deeper than realised by the research community. An apology is needed for past harms to our community by biomedical research, but perhaps this needs to start with exploring what those harms have been. As we see in non-pharmacological autism interventions, the harms may not be obvious to non-autistic people. For example, alongside financial costs, mental health issues for autistic people are often suggested as a target of biomedical autism research, without any appreciation that the current intervention and research agenda may in fact be exacerbating mental ill-health

As a community, autistic people have documented our research priorities, and causes of autism or “cures” do not feature prominently. We want research that will directly and positively affect our lives. We recognise that biomedical researchers generally do not have the skills to conduct the type of research we want, but the skills they do have can potentially be used for our benefit. Genomics offers enormous potential for improving human health. Knowledge in this area is accelerating at an astonishing rate, with debates raging around the ethics of genome editing, and regulation urgently required to avoid discrimination against vulnerable groups

Autistic people are a vulnerable community, and as stakeholders in this debate, we deserve full and transparent engagement. We cannot allow the scientific process to continue in a direction that results in elimination of other autistic people, only for researchers to express regret when the inevitable outcomes occur. Scientists may claim that regulation is the role of society, not science. Yet who guides society on such matters, if not scientists with knowledge of the field? 

These are difficult issues. If the obvious conclusion is valid; that PGS or other interventions may be used either to avoid autistic babies, or to avoid those deemed to have a higher likelihood of complex needs, then this must be openly acknowledged. If the biomedical research community is blindly forging ahead with lack of awareness or insight, this is an altogether different—but no less pressing—problem. In either case, the only way forward is absolute transparency, open debate, and a truly participatory approach to future research.