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.
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.
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.
