Tuesday, September 24, 2019

On Autistic “Super Powers”

Greta Thunberg 4.jpg
Greta Thunberg by Anders Hellberg | Wikimedia Commons
[image: Greta Thunberg, a white Swedish teen with long light brown plaits, standing
outside a building holding a large hand-painted sign reading,
"Skolstrejk för klimatet,” or, “school strike for climate”.]

Marie Porter 
Recently, there has been a lot of chatter on #ActuallyAutistic Twitter about the use of the term “super power” with regards to autism, and specifically by Greta Thunberg, who recently said, “Being different is a super power.” As usual, I have some thoughts.

First off, I want to acknowledge that not every autistic is going to see their own autism as a super power. The thing about autism being a spectrum is that how it manifests in us varies wildly from person to person.

I think of a scene in X-Men: The Last Stand—a great autism analogy movie, by the way—in which the character Storm declares about being a mutant, "There's nothing to cure." Beast responds with a comment to the effect of how easy that is for her to say, as she's not shedding blue hair. I think that scene is very relevant to the whole idea of super powers versus not. It’s part of why that movie speaks to me so much, as an autistic analogy.

Image from X-Men: The Last Stand. Source: CBR.com
[image: The X-Men character Beast, a blue furry mutant wearing a suit,
shaking hands with Professor X, a white bald man who uses a wheelchair,
Storm, a Black woman with choppy straight silver hair, looks on and smiles.]
In the same vein—and in that same movie—there’s another plot line about how the character Rogue struggles with her more isolating power/difference, in deciding whether or not to take a cure.

We autistics are all different, and those differences can be seen as more positive or more negative, depending on what they are, what we do with them, and how we perceive ourselves (and others) as a result. Some of us autistics—like Storm—are able to blend in better, and can benefit from that. Others may not blend in as well—much as Hank McCoy (Beast) will always stand out—or deal with unpleasant effects from their particular blend of autistic traits.

Also, as much as many of us are horrified at the search for a “cure” for who we are, there are many autistics out there whose “super power” makes them feel more like Rogue—and, as a result, wish there was a cure. Although, as Emily Paige Ballou has noted,
“Usually when I talk to these people, I have to question whether it’s the difficulties of autism itself that makes them feel this way, or years and years of being mistreated for being autistic, which can be a very difficult distinction to make when you have no standard for comparison."
Complicating the matter of this super power narrative are the Aspie supremacists. I do see how their "we're superior to everyone" narrative can make the whole "I see my autism as a super power” idea, well, kind of sticky. This is partially due to the fact that having a “super power” doesn’t necessarily make someone “superior to everyone” on the whole, and partially due to how Aspie supremacists distance themselves from autistics with intellectual disabilities. Treating certain groups of autistics  as somehow being different or lesser than when it comes to their supremacy narrative is pretty ridiculous, given that autism is defined by the commonalities between us. I just don't think that non-supremacist auties should be denied looking at their own autism as a super power on account of those people.

Personally, I'm one who does look at my own autism as a super power… and I think it fits in nicely with traditional views of super powers. I have heightened senses, and certain abilities that go with them. I wasn't born knowing how to properly utilize my abilities, however... and no one around me was really in a position to guide me on that, as I was an anomaly in those respects. I had to learn, and  things were bumpy along the way, not unlike those movie montages of superheroes learning to fly, or harness whatever other power they may have.

Just, you know, my experience was far less dramatic than accidentally setting buildings on fire with one's eyes!

Then, there's the whole matter of those with super powers having an Achilles’ Heel, or weakness. In super hero lore, such things are written in for a sense of balance, of course... but we tend to have a bit of balance there as well.

For me, yes, I can taste and smell things others can't, understand how things are put together by looking at them, replicate things by taste or view,  but certain high-pitched noises flat-out disable me. It's my Kryptonite!

Growing up autistic is hard. Being an adult autistic these days, just constantly surrounded by those who hate and dehumanize us, is also hard. If an autistic person looks at their autism as a super power, more… power to them—for them, it is, and I don’t think it’s great practice to deny anyone that view. Every day, we're surrounded by the message that we're broken, lesser-than, etc. Let us—those of us who see the positives, who've learned to benefit from them, etc.—have this one!

Additionally, people need to realize that there is a difference between “super power” and “super hero.” I think that a lot of the problems people have with the idea of autism as a super power is the idea that it elevates the autistic person above everyone else, rather than the super power being about this one particular aspect of them that is special.

Again, much as is seen in the X-Men universe, there are a lot of people with super powers who are not super heroes. Or even villains, for that matter—they’re just people with a special ability. I see a definite parallel in the real world.

Personally, I suspect many (Most? All?) people have something about them that others would consider a super power. I have a friend who went to work with an ear infection. I was so in awe of her ability to function at all, never mind actually being able to drive to work and work! I certainly can't do that. Is she a super hero? Not really... but in my world, her ability is definitely a super power.

For the record, though...  Greta absolutely is a super hero, at this point. Good thing, as the world right now needs more super heroes, and it’s so nice to see a young autistic woman in that position!

I just want to say that any autistic seeing their own autism as a super power shouldn't be seen as taking anything away from—or somehow lessening—those who don't see the same, for themselves.  It's a spectrum, and—super power or not—we all have worth.

Thursday, September 19, 2019

Countering Neurodiversity Misinformation on KPCC's Air Talk

Rosa's son out in the community, enjoying a local aquarium
[image: White teen boy with short curly brown hair,
seen from the back, in front of a large public aquarium.]
Shannon Des Roches Rosa

I was recently invited to be a guest on National Public Radio affiliate KPCC's AirTalk, to provide a contrasting perspective to science writer Moheb Constandi's Aeon article Against Neurodiversity. What follows is the transcript of our conversation, which was only 23 minutes long and in which I suspect neither of us covered all the points we wanted to make.

However, before diving in, I have to state that I truly regret not speaking out about how absurd it is when writers like Mr. Costandi claim to champion autistic self-advocates with intellectual disability or speech disabilities, yet don't even bother to get a single such person's opinions. To see what self-advocate Ivanova Smith has to say about articles like Costandi's, please read their article "You Can't Have Neurodiversity Without People With Intellectual Disabilities."

Transcript of KPCC AirTalk segment The Benefits And Drawbacks Of The Neurodiversity Movement In The Autism Community, from September 19, 2019.

Host Larry Mantle: Back in the late 1990s, the term 'neurodiversity' was coined by an Australian sociologist who made the case that neurological differences should be respected by society, and that they should be considered like categories of class, sexual orientation, ethnicity, and disability.

The neurodiversity movement has both supporters and critics within the autism spectrum community. In his recent piece in Aeon, Against Neurodiversity, neuroscientist Moheb Costandi argued the movement has sidelined the needs of nonverbal individuals, favoring those of "high-functioning" autistic people, whose many contributions can be considered in the workforce, personal relationships, and within families.

Joining us to talk about the issue is the aforementioned Moheb Costandi, who is a neuroscientist and science writer, and also author of the book "Neuroplasticity." Thank you very much, Mo; good to have you with us.

Costandi: Well thank you, good to be here.

Mantle: Let's start first of all with what you think the Neurodiversity movement has contributed. What are the positives you see from it?

Costandi: There are of course many positives to the ... to the movement. It has raised awareness about autism. It has increased acceptance of autism, and, uh, both those things I think are very positive indeed.

Mantle: Do you see it as comparable to how any other sorts of disabilities are dealt with? I was thinking, for example, depression is something we think of as a tremendous burden for people who have chronic depression to deal with it in their lives. No one would wish depression on someone. At the same time, there are tremendous works of art that are created out of that challenge of depression. Is that at all comparable in your view?

Costandi: It's possible, possibly. But I don't think a direct comparison is very useful. More closely related is the Deaf community. So in the 1970s when cochlear implants were first introduced, a sub-population of people in the Deaf community protested against the use of cochlear implants, saying that they, uh, that being Deaf was a part of their identity, and I think that's a better comparison to the Neurodiversity movement.

Mantle: You see Neurodiversity advocates as people who are anti-medical interventions to help people deal with any limitations resulting from being on the spectrum?

Costandi: Some of them are. Neurodiversity advocates come in many different stripes. Some of them are strongly opposed to any of the medical of autism and of any attempt to develop treatments for autism, which they, uh, they basically equate that with eugenics.

Mantle: So if it could be identified in utero or with precursors, for kids who develop symptoms of autism later, their argument would be that even if there is a way to address that, it would be wrong to do it, and we should let nature take its course?

Costandi: Some of them would and do argue that, yes. I can't say that that's true of all neurodiversity advocates.

Mantle: We're talking with Moheb Costandi, who's a science writer and scientist, and who recently wrote the piece "Against Neurodiversity" for the online science publication Aeon.

Coming up we'll talk with senior editor of Thinking Person's Guide to Autism, which is a neurodiversity-oriented website, and online community. Shannon Rosa will be with us.

[break music]

Mantle: I'm Larry Mantle, and I'd love to hear from you if you're on the autism spectrum yourself, or you have a family member or close friend who's on the spectrum: What do you think of the Neurodiversity movement, and its way that it frames autism? 

Joining us, our guest Moheb Costandi just wrote about this issue, and he has concerns about the way that the Neurodiversity movement does frame autism; he thinks that it downplays and discourages medical advances that would be able to treat particularly those with severe autism, who are not able to verbally communicate, or who are not able to take care of themselves. He is concerned that it essentially doesn't deal with the severe challenges that can come for some who are the autism spectrum. 

With us is the senior editor of Thinking Person's Guide to Autism, a Neurodiversity-oriented website and online community, Shannon Rosa; Shannon, thank you very much for being with us. Could you define the Neurodiversity movement as you see it, please?

Rosa: Sure, and Larry, thanks so much for having me here today.

So, 'neurodiversity' simply means that everybody matters, and that everybody has rights, no matter what kind of brain that they have, and no matter what kind of disabilities they have. Neurodiversity is actually incredibly inclusive, and as the parent of a high-support autistic teenager who requires 24/7 support, I think that neurodiversity is actually more important for people like him, to have other people recognize that he has value as a human, and that he deserves to be a part of our community.

Mantle: All right. So you see it as not marginalizing him, but seeing him as worthy as anybody else, and having full personhood, and being a contributing member of society. Does that in your view correspond with a sort of "anti-science advancement" in treating autism?

Rosa: [Laughs] That's a pretty complicated question. Let me tell you first of all that "treating" autism depends on what you mean. For instance, a parent might want to cure their child's autism because they come from outside the autistic community and they don't know anything about autism and disability. But there was recently a study that showed that parents of autistic children who were familiar with autism and neurodiversity and actually understood what it meant were more interested in pursuing research and supports that helped their child.

For instance, I interviewed Dr. Ruth Ann Luna at INSAR, the International Meeting for Autism Research, in May, and she was talking about how gut microbiomes affect autism. Now, this is not to say that if you put your child on a special diet that you're going to cure autism, but rather if you understand that [your child] might have an aversion to some kinds of food for a biological reason, and if we can identify tests that help us understand which kinds of autistic people will have reactions to which kinds of food, then we can help them have a better quality of life—because anyone who feels better is going to behave better. That doesn't mean that they're less autistic. And that is a treatment, that's a medical treatment. But it's not the kind of treatment most people are talking about, and I think it's not the kind of treatment that a lot of neurodiversity detractors talk about.

Mantle: Well, let's also talk about interventions. My wife is a speech language pathologist, and her primary work is with elementary school and preschool students who are delayed talkers, typically on the autism spectrum. So there's a whole team approach to interventions, to try and help the children communicate more effectively, and to tune into the world around them as they are able to do so, and grow in that. I assume Neurodiversity advocates don't see that as harmful, but can you expand on that?

Rosa: One of the things that I have to say is that my perspective as the parent of a high-support autistic child is informed by autistic people themselves. If I didn't have the privilege and the honor of being mentored by very patient autistic people, even though I myself came from outside the disability community and didn't know anything, I wouldn't be able to tell you the things I'm telling you now, and the things that have improved my son's quality of life.

So [autistic neurodiversity proponents] are the ones who helped me understand that when we have wonderful people like your wife working with our very youngest kids, we need to ensure that our autistic children have some kind of communication system, no matter what it is. It doesn't have to be speech. It has to be communication, and that's because again we are seeing them as human beings who have rights.

And to go back to what you said earlier, it's not necessarily that they're contributing to society. There are plenty of people who don't contribute to society who are still valued and included. But they're somebody who matters. They're somebody who, if you go down to the local coffee shop, we know who that person is. My son is known all about town, and they know who he is, and they would know if he stopped coming to all his regular haunts, they would wonder what happened to him, and they would check in with him.

One of the things that [Mo's] article talked about is that the Neurodiversity movement wants to remove funding for high-support people like my son, when in actuality it is Neurodiversity detractors who are trying to get funding for Home and Community Based Services taken away, so that they can put their children in what they call "neo-institutions," which are segregated housing situations that remove them from society. And research shows very clearly that children like mine, and children like those of many of the people in the article, are again safest when they're in the community.

Mantle: We're talking with Shannon Rosa, Senior Editor of Thinking Person's Guide to Autism. Moheb Costandi, as you hear the description of how Shannon Rosa sees Neurodiversity, does it cause you concern?

Costandi: Well, first I have to say that Miss Rosa is not an official spokesperson for the Neurodiversity movement. [Ed.: True enough.] As I said earlier, Neurodiversity advocates come in many different stripes, and by the same token I don't think it's fair for Miss Rosa to try to tar all anti-Neurodiversity people with the, with the same brush with regards to treatment. There are clearly some elements in the movement who deny that autism can be very severe and disabling, and that to me is worrying.

And more importantly, I mean it's all well to say that the Neurodiversity Movement is all-inclusive, but it's very clear now that it doesn't represent all autistics, all autistic people, and uh, there are many of them who simply do not agree with it. There is obviously major opposition to the movement, and it's clearly becoming quite, uh, very, should I say, divisive within an already fragmented community.

Mantle: You've raised the issue of disability. Real quickly, because I have to take a break, but Shannon Rosa, would you agree with the point that someone who is lower functioning on the autism spectrum, that that is a disability? Do you disagree with that?

Rosa [mystified]: Uh, none of the Neurodiversity advocates that I know deny disability.

[break music]

Mantle: It's called the Neurodiversity movement within the autism spectrum community. Does it do more good than harm or vice versa? Moheb Costandi is the author of Against Neurodiversity for the online science publication Aeon, he's also authored the book Neuroplasticity, and has concerns about the Neurodiversity movement; what is says is that some adherents to it who do not recognize severe autism as being a disability, that they are against the potential for scientific advances to help people with autism be able to express themselves, or connect with the world in deeper and clearer ways.

So Shannon Rosa, I'm wondering if you could elaborate a bit between the three levels, 1, 2, and 3, of people who are on the spectrum, Level 3 being those who need the highest degree of support. Does the Neurodiversity movement look at those individuals as different, or does it sort of see everybody on the spectrum as similar?

Rosa: [laughs] Nooooo. [laughs again] That's why it's called the NeuroDIVERSITY movement.

So you're talking about the three DSM levels of autism severity that Mo talked about in his article. And the way that the autistic community sees people like my son, as opposed to the people that, for some reason and Mo claims, say [neurodiversity] doesn't want to include people like my son, is that the level one people can appear—I say appear—to have no social or physical disabilities. What this means, actually is that they can "pass" in public even though they often have severe anxiety, and you don't see their disability because they have to cover it.

This doesn't mean that [level one autistic people] don't share traits with my son. One of my friends, a gentleman named John Marble, who Mo cited in his article, we were hanging out with my son Leo. And John used to be a federal aide to the presidential staff. And when he was hanging out with Leo, he would see traits in Leo that he had never seen in a another person before, and I would see things that John did, and I'd say, "wait, you're doing the same thing [as Leo]."

What brings autistic people together (and here again, I acknowledge my debt to the autistic community) is these commonalities: sensory issues, sensory processing issues. Auditory processing differences. Motor differences. These are things that are not necessarily in the DSM or divided by the DSM. But they're very real. So we can talk about the diversity of needs, and the reality that neurodiversity does in fact include people of all abilities.

Because, with respect to Mo, he's a journalist and a neurobiologist from outside of the Neurodiversity community that I've been working in for ten years. And so for him to say that there is this marginalized group of people who claim autism isn't a disability and needs no medical treatment, is no different than him bringing in a few people who claim that neurodiversity doesn't represent everybody, and that there are a few autistic people who resent neurodiversity. Of course you're going to be able to find anybody for any position.

Mantle: What do you see as the contributions that the Neurodiversity movement has made for those with autism?

Rosa: Well, another thing about the Neurodiversity movement is that it's a relatively young movement. And so it looks to the self-advocacy movement of disability to inform its practices of inclusivity—and the self-advocacy movement was actually founded by people with verbal and intellectual disabilities. So neurodiversity has brought that into the autistic sphere,  and neurodiversity-oriented groups like the Autistic Self Advocacy Network have done real work and provide real policy, in providing tools and resources, and effecting government and legal policy at the highest levels, to improve the quality of life not just for the kind of [autistic] people who, it's claimed, marginalize my son, but for people like my son—to ensure that they have full rights, and can have the best quality of life possible given their disabilities.

[Aside: at this point Rosa's rarely-used land line phone died, and she did not hear the following passage live since she was frantically running up her stairs and around the house to locate another working land line handset.]

Mantle: Moheb Costandi, what do you see in terms of any concrete harms from the movement? Do you think there are some types of research that has been discouraged, or certain types of therapeutic approaches?

Costandi: Well, yes. Uh, advocates do attack parents who go for certain types of treatments for their autistic children. And of course there's, there's a lot of bullying and harassment of anyone who portrays their autism in a negative light. And contrary to what Ms. Rosa has just said, there are quite a few advocates who deny that autism can be severe and disabling. It's funny that she mentioned John Marble because I cited him in my article tweeting "there is no such thing as 'severe' autism." [Ed. note: taking issue with unhelpful functioning labels like "severe" is not the same thing as denying disability.]

And may I quote from Judy Singer's blog—Singer is the Australian sociologist you mentioned at the beginning who coined the term 'neurodiversity'; she says,
"I regret that some in the Neurodiversity movement now align themselves with an extreme social constructivist view. I regret that some wish to expunge words like 'mild,' 'moderate,' 'severe,' and 'disability' from the English lexicon. This kind of silencing can only backfire on the whole movement, as it necessarily engenders an equal and opposite backlash from those who consider themselves to be severely disabled."
And this is what is happening now. More and more people who do not agree with the, with various things that Neurodiversity advocates say are expressing their discontent with the harmful consequences of the Neurodiversity movement. And I'm advocating for those autistics…

Mantle: [tries to speak] OK…

Constandi [keeps talking]: …who say the Neurodiversity movement does not represent them.

[Rosa rejoins the conversation, somewhat out of breath]

Mantle: Mo, I appreciate that. I need you to hold there because Shannon Rosa, I just want to hear a quick response to Mo, and I know we just got back to you on the line after you fell off. But your final point, about the importance of the movement?

Rosa: Well, again, the really important thing for people to remember is that the Neurodiversity movement is a civil rights movement. And a lot of the times, when I hear the kinds of arguments that Mo is proposing, it's not unlike the way a lot of people feel when they hear certain representations of the civil rights movement on certain conservative talk shows or radio, and it's not unlike the way that I feel when I just heard that [laughs in disbelief] anti-vaccine advocates are taking over the California capitol under the guise of civil rights.

Mantle: And it's important that we debate things also, you don't want to just shut it down and say by definition it's discriminatory. Thanks so much, it's AirTalk.

Due to time restrictions, my response to Mantle's concluding comment was not included. I said, "I don't mind respectful disagreement, but I do mind misrepresentation."


Note: This transcript omits some of Mantle's periodic requests for invested listeners to call or write in.

Autism And The Gut Microbiome: An Interview With Dr. Ruth Ann Luna

Dr. Ruth Ann Luna and Shannon Rosa. Photo © TPGA
[image: A Latina woman with long dark brown hair, and a white woman
with chin-length fluffy red hair and glasses, smiling and posing together.]

Our editors Carol Greenburg and Shannon Rosa spoke with Dr. Ruth Ann Luna about her research on autistic kids and their incredibly diverse gut microbiomes during INSAR 2019, How her research is not about "special diets for autism," how GI issues are co-occurring conditions and not a core trait of autism, how there’s no one universal single bacteria that is associated with autism, how GI profiles are ofter family- rather than neurotype-specific, and how this research may translate into real world supports for autistic people.


Shannon Rosa: Thank you so much for being here. Can you tell us a little bit about your background and what brought you into this area of autism and gut microbiome research?

Dr. Luna: so I have a super-weird background. I have degrees in genetics and bioinformatics and clinical laboratory sciences,  so, a long time ago, 20 years ago, I was with Human Genome Sequencing Project…

Rosa: Back when it was a 3 million dollar enterprise?

Dr. Luna: It was. And it’s so funny to me, because what once took years of generating, we could now do in a week in my lab in a little test with a laptop. Progression is pretty crazy in terms of sequencing. But I’ve been workin in clinical life and diagnostics for 10 years.

And everything we do in our lab is set up to be clinically viable, so it’s sort of a step beyond what you basically see in a research laboratory.

Rosa: Got it. So what got you interested in gut autism and gut microbiome research specifically?

Dr. Luna: So I was in the microbiome center directing all of our sequencing efforts when my son was diagnosed with autism. We were already doing things in the gut microbiome with other pediatric issues. So we were looking at IBS, and ulcerative colitis, and some respiratory microbiome pieces. We had all of the resources there to do it

And then my son was diagnosed, so it seemed like a perfect marriage. But I had a very hard time convincing some of our, our, well, our digestive diseases in there within the medical center where I worked that GI issues were relevant in autism. It was a bit of an uphill battle.

I joke that I couldn’t get them to pay 30k for a pilot study, but yet we had an over a million dollar grant to do the big study. And yet every parent I ran into would say, “Oh, yeah, we, we need help with this.”So it took a long time for them to believe us that this was an issue worth looking into.

Rosa: Where are you currently working?

Dr. Luna: We’re at Texas Children’s Hospital in Houston. The work that we’ve done is (obviously) in the pediatric population. All of the laboratory work is being done there, in my lab.

We recruited participants from, across the country, including Nationwide Children’s Hospital Ohio and UT Southwestern Dallas. But we also had so many families from across the country that wanted to participate that, if we could arrange to ship materials and specimens back and forth, then we did. Because we wanted to give them that opportunity.

Rosa: Can you explain fo the non-researcher community members what multi-omic means?

Dr. Luna: [laughter] Well, different people have different definitions of multi-omics. It’s sort of how much can we jam into that 'multi.' So, so you talk about genomics. You talk about microbiomics or metabolomics, etc. It’s how you merge all of the laboratory data that we’ve generated in a meaningful way.

And it sounds highly complex, but we spend most of our days playing with intricate Excel spreadsheets [laughs]. So they turn into these block files of, of different rates and different amounts of bacteria or metabolites, and it’s the merging of all that data that creates what we call a multi-omic profile. And then we layer on phenotypic data. And then we see what the clinical picture looks like for each individual. What challenges do they face, what are their GI symptoms. Do we know anything about their genetics.

Rosa: It sounds almost like CSI, but medical.

Dr. Luna: It is! There’s a lot of data [laughs].

Rosa: Can you please tell us about your research sample. What were your selection criteria and why?

Dr. Luna: We tried to be as inclusive as possible. Everyone had to have a confirmed diagnosis of ASD, generally via an ADOS [Autism Diagnostic Observation Schedule], because we still can’t agree upon a single gold standard, and we had to pick something. Families that did not have an ADOS were eligible to get an ADOS through this study.

We did not exclude for GI symptoms because those were a lot of the kids we were really interested in looking at or profiling. They could not take any antibiotics or really intake antimicrobials. So no antifungals or antivirals for 3 months before participating. Other than that, unless they had some major genetic abnormality that was not associated with their ASD diagnosis or some other major medical condition that are beyond what we happen to know to be ASD comorbidities, then we took all comers. It didn’t matter if they were on a specialized diet, if they were taking supplements. That was all fine. If they were taking psychiatric medication, that was okay. We just tabulated what those differences were so we could compare it later.

Carol Greenburg: So, a truly diverse sample.

Dr. Luna: We, that’s what we tried to do. We tried to get big numbers so we could ask more specific questions with some of those variables, at least at a pilot level, but we felt that some of the other studies had been so exclusive, they didn’t get a really good picture of the entire spectrum.

Rosa: So what, if you could describe this within the parameters of this interview, what were the findings the primary findings of your studying?

Dr. Luna: Probably the big takeaways are that one, there’s no one universal single bacteria that is associated with autism. And there’s no, like, one particular bacteria that’s associated with autism. it’s really a dynamic community. There were certain bacteria associated with different characteristics: with repetitive behaviors, with self-injurious behaviors, with communication abilities, with diet, and especially with GI symptoms, so that within our larger cohort, we have these subgroups that fit with these complex phenotypes who likely look very different and would need very different treatments if treatment at all. And so, that’s really our big takeaway, that there is no one thing that we need to target. It’s very dynamic, and it’s, in the end, maybe very individualized in terms of treatment strategies.

Rosa: Could you could test for specific bacteria to see if autistic people have them, and then say that they could possibly have a specific co-occuring condition?

Dr. Luna: Um, you know, and I’m very cautious about we talk about those types of data, because for us and what we’ve discovered, at least as a microbiome science community, we can talk about composition: which particular bacteria are there, but we see time and time again that beyond what that composition looks like, their function is more important. So beyond who is there, we need to know what they are doing. And that’s why we’ve also done metabolomics in this study, so we can look at what active products that bacteria community is producing, and that is most likely going to have a bigger impact on what GI symptoms are present, and how a person's overall body is functioning.

Rosa: Were there any findings that surprised you? 

Dr. Luna: Well, I won’t say it surprised me, but it wasn’t something we were chasing, and that was the idea that we’d originally intended to include the siblings that didn’t have any GI symptoms. But then, of course, once we knew to ask the parents, you know, describe your kids, let’s go through your clinical picture, and they’d give us the laundry list on their autistic child, and then turn to the sibling and say, “We’ll, they’re completely fine, they don’t have any issues.”

But when the siblings completed their own diary that asked them to write the number of days they had abdominal pain and those types of things, and then the parents had to ask directed GI questions of the siblings, we found that over 50% of the siblings also met criteria to be placed in our GI group.

Rosa: Wow.

Dr. Luna: Yeah. It was surprising that we found so many siblings, but when you hear about all the things that we knew happened in the family, it’s really not that surprising. So it was just good to get that on record, that this is real, these shared symptoms that we see a lot of the times. And when we talk to parents, many times they may have GI issues too. A lot of the siblings may rate their GI symptoms compared to what their sibling may be experiencing, and may think, “Oh, mine isn’t that bad,” but for them, it really is.

Rosa: Did you factor in whether or not the siblings were genetically related, and if so did that have any effect?

Dr. Luna: We did, that’s an excellent point. We only included full siblings, because we didn’t want any additional confounders with genetics. We wanted to be able to control for environment and genetics, so they had to be full siblings, and living in the same home.

Rosa: How would you like the findings of your study to affect the approaches of autism and medical professionals to supporting autistic individuals in the real world?

Dr. Luna: I think we’ve seen a lot of people that are quick to jump on the latest probiotic or dietary intervention. And what we’ve said, time and time again, is that this is the baseline study that we needed before we made any of those leaps. We need to approach these matters with caution, but know that we want to be able to triage specific treatments to these complex phenotypes that we’re creating here.

We want everyone to take a pause for a second. But at the same time, if it’s something that’s relatively benign, like a change in diet, and if families and autistic individuals are keeping their own data on whether they’re feeling better or worse, by all means. Because it could be very real. But it’s simply, there is not a one size fits all treatment strategy for [autistic] GI issues right now.

Rosa: Can you talk about how research in the area of GI and other, and similar co-occurring conditions has evolved over time, and specifically how your research differs from the special diets for autism approaches?

[Everyone laughs]

Dr. Luna: It’s actually been an unfortunate history. If you look at the evolution of looking at GI issues in autism, for instance the original vancomycin trial that was in 2000 where they saw considerable benefits in children on antibiotics, what it meant is that gut microbiome matters and changes could effect positive changes in GI symptoms.

And then of course we had a stalling point, because no one wanted to touch GI issues in autism for very obvious political and ethical reasons for a long time. It has taken this new crop of parents that are seeing in their autistic kids changes when they’re on antibiotics or significant GI issues to say, “Why aren’t we further along in research?” I’m certainly partnered with some parents who are trying to fund this research, who observed some of these same things and know that for their child, it’s probably one of the biggest impacts on quality of life. And so we’re trying to push it forward the best we can. But it’s been very slow-going and very frustrating.

Rosa: Do you think there’s an increased recognition now that GI issues are a co-occurring condition and not a core trait of autism? Because there are a lot of parents who seem to think that a change in diet is a change autism, when what we hear from other researchers, and from autistic people themselves, is that if you’re a human being and you feel better, you act like you feel better.

Dr. Luna: That’s exactly what we’ve talked about. When you can relieve these chronic GI symptoms, you’re going to see improvements across the board. You’ll see improvements in behavior and improvement in cognitive ability and above all, when you’re improving GI pain, you’ll see improvement in sleep.

And we’ve seen with other presenters at INSAR that sleep is paramount in your overall functioning for anyone, much less individuals who are oversensitive to a lot of changes, to whole body differences like when you’re sleep-deprived. So yes, we think that alleviating these symptoms leads to a much better quality of life, and much better full-body functioning, but, that’s sort of the starting point, and not necessarily something that we’re trying in other areas. Much as we talk about all these interventions, the primary question should be, “are you doing things because you want to alleviate GI symptoms?”

Greenburg: Yes! Did you find a lot of school avoidance or stigmas of kids with GI issues and autism? Did you find a lot of anxiety about being out of the house in general, even not at school, or for pleasurable activities?

Dr. Luna: That’s an excellent question. I don’t know that any of our surveys asked about school avoidance specifically, but there are anxiety-specific questions that I’ve not looked at yet. The behavioral analysis we’ve done so far has looked at the sub-components and sub-skills associated with self-injury and repetitive behaviors, but we’ve only captured the information in such a way that we can drill down the specific questions. I know there are questions about not wanting to leave the house and social avoidance in that subsection.

Greenburg: I was autistic who had a lot of GI problems. One of the problems with that co-occurring problem was that I was afraid to leave the house. I was afraid to go to school. I was afraid that I would feel sick. I was unable to deal with it, would have to go to the nurse’s, and it would have to be terrible. So I had anxiety over what might happen.

Rosa: Your anxieties had anxieties.

Dr. Luna: [laughs]

Greenburg: My anxieties have anxieties, yes.

Dr. Luna:  Which only makes the GI symptoms worse. [laughs]

Greenburg: Which is a cycle.

Dr. Luna: It is. It absolutely is.

Greenburg: Yeah. So in addition to the physical pain, there was the mental anguish making me sick again. That wasn’t recognized as such. As a female, I was not taken seriously.

Dr. Luna: And we talk about that, about the gut-brain analysis sphere. You know, it’s less about the chicken and the egg, and more about disrupting that cycle. Can you cause interference enough to cause positive change throughout the body. That’s really what we focused on.

Rosa: What are your next steps?

Dr. Luna: [laughs] A lot of data analysis. A lot of the microbiome work is based on sequencing something called the 16S or RNA gene, but we now we can do a full metagenomic analysis, so we can confirm what we’ve seen in this initial microbiome study. We can also look at the fungal profile, and even some viral pieces.

Again, this is to give us more clues as to what we’re seeing in specific genes that might be causing some of these GI symptoms, and so we have a lot of data we’re going to dig through. We also know that there's a whole lot more we can do to look at the dietary factors. So I’ve been having some pretty fruitful discussions with some dietitians who’ve thought about ways to look at picky eating.

And because we have a full two-week diet diary, we can look at the number of unique foods the child eats over that period of time, and create a different kind of scale: not of how diverse the microbiome is, but how diverse their diet is and how that might impact things.

Rosa: Wow. Well, we’ve definitely been getting a lot of feedback lately from people who are saying, well, “It’s not that I’m picky, it’s that I’m selective because certain foods cause GI distress.” Or there are sensory reasons why they don’t want to eat those. So it’s not just being picky. There are legitimate reasons.

Dr. Luna: Right, this self-restrictive diet can be for a variety of reasons. And most studies only do a 24-hour to 72-hour diet diary. We wanted the full two weeks because we know that there’s ebb and flow in eating habits, and in how someone is feeling in the GI symptoms. We wanted to capture all of that as much as we could reliably. Which is hard.

Rosa: Wow. I can’t imagine how much data you’re crunching.

Dr. Luna: [laughs]

Rosa: Is there anything else that you’d like to add?

Dr. Luna: No. Just that, you know, I’ve been really glad to see how well-received this study has been. We look at it as a family, and there’s not a lot of guidance out there as to how to approach this. And, as many of us know, it’s even hard to get the medical community to acknowledge these issues, many times. So I really appreciative being able to share this and obviously, we’re always open to feedback. We’re active members of the community, so anything anyone would like, we’re an open book for questions.

Rosa: Right. Well, thank you so much. I really appreciate you taking the time to talk with us.

Greenburg: And thank you for all your work.


Interview transcription by Sara Liss

Wednesday, September 18, 2019

Artistic Collaboration Across Neurotypes: Autistic Artist Sonia Boué on the NUNO Project

M. Kelter

Earlier this year, fourteen artists (with funding from Arts Council England) presented a unique exhibition called Neither Use Nor Ornament (NUNO). "Unique" in that the event featured an intricately-designed collaboration between autistic and non-autistic creatives.

The project recently released a short film providing an overview of both the exhibition and the artists involved. To learn more, I recently communicated with friend and project organiser Sonia Boue about autism, creative access needs, and the relationship between objects and autistic art.

M: What was the guiding idea involved with the creation of NUNO?

Sonia: The project is really essentially about me finding professional and personal congruence by bringing together two groups of people. The autistics were my post-diagnosis contacts and the non-autistics were the artists I met online before my diagnosis. I had no idea how to bring them together but I knew I had to try it out.

M: I can't find this now, Sonia, but I thought on social media you referred to something as being "edited with an autistic eye" and I was wondering if that was a reference to the short film or the overall project.

[video description: Four white adult artists talk about collaborating on the NUNO project,
intercut with an exploration of the exhibit and performances.]

S: The autistic edit was about the film, but it is a good quote. It's also in a sense true of the project as a whole in a way, so that is very perceptive of you, let's go with that.

M: I wasn't sure which was meant, but I thought it was interesting that "autistic eye" felt right in either usage. Does that mean you or another autistic artist filmed and edited this video?

S: A non-autistic filmed it, and Naomi Morris, who is autistic, edited it. I gave her very little direction; I wanted her interpretation. She had to use someone else's camera work because she was too busy performing on the day we shot most of the footage—so I hired a non-autistic person to shoot it. In essence, like the rest of the project, the film is a collaboration and an act of faith across neurological types.

M: People generally think of autistics as solitary, averse to groups, but it seems like it worked well here, that mix of collaboration and accommodating different sensory experiences.

S: I feel very strongly indeed that we can lose some of our aversion to social contact if the welcome is right.

M: Another interesting thing to me about the video and the edit is the resonance it has with the issue of autism and representation. In addition to autistic characters being played by autistic performers, I've wondered what additional paths could be opened up, in terms of creatively finding a way to bring interior, lived experiences to stories about autism. Editing is an interesting idea, having that control over the pacing and tone and so on.

S: For me, learning to edit film really developed me as a person.

M: What do you think an "autistic eye" brings to the editing process that another perspective might not?

S: It's not going to insist on linearity. It's going to focus on the sensory world. It is evident in the early passages of the NUNO film.

M: The transitions and sound quality are really distinct. That's one I feature I liked about NUNO as a whole, the work did have a lot of sensory range. It is difficult to convey to others the experience of sensory sensitivity, for example. But in the video, you could see some pieces that were textural and captured some of the intensity of how things can feel.

S: Naomi focused so beautifully on the theme of the exhibition, she cut through a lot of the usual narrative elements you might be expecting from a more neurotypical edit, which might focus on the artist biographies or creative journeys. She focused on the objects and the action.

M: That might not make sense to non-autistics, but it seems like, for people on the spectrum, objects—the intensely cherished items we can feel attached to and find personally meaningful—often are in some way our biographies and personal stories. Editing is an interesting way to creatively examine that experience.

S: Directing is a good position for an autistic I think.

M: How did objects become such a focus for you as a multi-form artist and for this project?

S: My focus is related to my autistic sensibility—some objects almost vibrate with energy and personality. And it began with my grandmother's handbag; discovering it was such a powerful experience, it inspired me to find other artists working with objects. They are the non autistic artists who joined NUNO first. When I got my autism diagnosis, I hooked up with autistic artists and created a network. Then I asked them to join NUNO.

M: You've described this as a successful collaboration between people with different neurologies. The communication within the group somehow worked. What made it work, Sonia? Tell us your secrets so that we can all start doing it.

S: The secret is working with some really trusted contacts who I've known for quite some time—and only working with people they recommended. But my diagnosis has also been a revelation, which has enabled me to work on my communication style. I have taught myself to work to my strengths and I have such a strong drive to create that it enables me to push outwards. I guess the handbag spoke to me so deeply that when I learned my family history I had to break through. Specifically on NUNO, I feel it worked due to the level of trust and my openness about my own difficulties, which meant the non-autistics got on board with me supportively—this also meant the other autistics felt safe.

M: What is trust in a context like this? You felt you could be open without harsh reactions?

S: Absolutely. I chose to use mainly email to communicate so I played to my strengths in not trying to articulate too much in person. Because my project had arts council funding and was funded to counter ableism, people knew that. I designed the project to be a safe place. I was in charge. That's the difference.

M: Is that the lesson? Having autistic oversight with the parameters of a group interaction?

S: Controlling parameters is a big part of it, but I also think finding genuinely inclusive partners has been key. Finally, getting the funding to be a person who can actually demonstrate professional competence gained me a new peer network with shared values. They could see that I'm good at my job and make allowances for my communication styles. Everyone knew I got my funding to work autistically and so in a sense they kind of had to cut me some slack. Within that slack genuine respect and relationships grew.

M: Did you gain any sense of what the non-autistic artists took away from the experience?

S: Some of them really valued understanding in detail how to support an autistic person through quite complex professional processes. A lot of the work was about trying to figure out how to make an experience better or more accessible. I think a lot of people on the project learned that you can really trust an autistic to take charge and run a very tight and smooth ship. I think because I need calm I am good at creating it. Some people were impressed with the depth of the exhibition and the novel way of bringing artists together through online forums (where most of us met).

M: Is there anything unexpected you learned from the experience?

S: I think a lifetime of aversive experience has an impact on our social appetites. With NUNO, I feel some of this was reversed for me and I began to experience social enthusiasm because the conditions and the social welcome were right. I love the idea of going from aversion to enthusiasm. I still experience aversion but am joyful to have encountered something new. I think this is really, really interesting. It's about the welcome and the valuing, which we never get growing up.

Tuesday, September 17, 2019

How to Be The Teacher Our Autistic Students Need

Margaret Cone Head Start Center 3
Photo © US Department of Education | Flickr / Creative Commons
[image: A Black adult with curly medium brown chin-length hair and glasses
reading a book with a young Black student with long black hair in cornrows.]

Miss A

I am a special education teacher who happens to have an autistic teen and a recent autism diagnosis of my own. I've sat on multiple sides of the table; I’ve seen a lot. And we’ve all seen the headlines where professionals have demeaned or abused students in their care. We all think, “I’m not like that!”

But I’ve seen professionals limit or take away a child’s voice. I’ve seen students given mindless and meaningless tasks. I’ve heard terms like “pre-learner” and “so low.” I’ve seen students spend years without access to reading and writing instruction. And I’ve seen professionals doing all of these things without realizing the harm they are causing to their students.

We can be better.

We can be the teachers that our students need. We can celebrate neurodiversity while we hold ourselves to higher standards. We can provide robust education, equal access to the curriculum, and a life of autonomy and dreams.

It starts with this:

Believe your autistic students are capable

What do you believe about your students? What stories and stereotypes have you internalized? Because we cannot give our students what they need until we build a deep belief that they are capable and worthy as they are. They do not need to be fixed. They do not need to be ‘normal.’

You can start by filling your social media feeds and your library with #actuallyautistic voices. Research the social model of disability. Learning about your autistic students with this information is more important than lesson plans, data sheets, or IEPs. It is too easy to use new tools but continue old patterns. This shift allows you to begin seeing your students. You will notice the ways they problem-solve and persevere. You will notice their knowledge—and you will believe it without needing to test it. You will see the joy and celebration of joining a child in the pursuit of their passions, just because.

You will be committed to communication systems with all the words. You will realize no one needs neurotypical joint attention before having a voice. You will realize this because you will hear their voices all day, even when they are not speaking. You will want to explore literacy, math, and creative writing. You will realize that no one needs to surpass some number on an IQ test or hold a pencil to gain access to a well-rounded education; you only need to support their access to it. Each of our students can be valued members of their communities—as they are.

Empower student voices

Supporting autistic students’ voices is the most important job we have.

Our first priority must be giving the students access to a full language system. The system can be high-tech, low-tech, or mid-tech, but it needs to be more than a few choices, more than only nouns. Our students need nouns, verbs, pronouns, actions, feeling words… all the feelings. They need words to protest, words to complain, and words to tell us that they do not like what we are doing. They need access to the alphabet. They need systems that can be used today, and adapted for tomorrow. They need support staff who don’t limit their words based on harmful stereotypes or bigoted beliefs. They need us to listen to what they are already saying, to elevate and expand their current voice, to stop believing that speech—or even words—are the only valid ways to communicate.

I have supported dozens and dozens of students in using AAC (augmentative and alternative communication), and in accessing assistive technology to expand their communicative options. I have never regretted it. I have learned that my own daughter believes she’s the boss. I have heard students compare water beads to the texture of jelly. I have seen the sheer joy that lights a child’s eyes when they finally find the exact right word for what they were thinking and feeling. Learning about AAC transformed everything about my teaching.

It comes down to this: there is zero harm in providing access to all the words. There is zero harm in modeling language all day every day in a form students can access and output. So this is what we do: provide access to multiple ways to communicate. Model vocabulary and messages without expectation, without drilling, without losing the autonomy that is inherent to having a voice.

Then: listen.

Respect every student's no

All too often, our students are told, “we don’t say no to teachers” or, worse, they have their bodies manipulated to do an action when and if they resist. We need to recognize that “no” has many forms: pushing items away, falling to the ground, and sometimes—when we have refused to listen—aggression. All of these “behaviors” are resistance to the stripping away of a student's autonomy. Wouldn't we all do the same thing?

Children and adults with disabilities are abused at higher rates than neurotypical or able-bodied individuals. When we ignore a student's refusal, when we manipulate their bodies without consent, we are telling them that saying "no" is acceptable. We are telling them that their bodies are not their own.

Students must be allowed to say to say no. And we can also help students craft compromises, because there is almost always a way to meet the needs of both teacher and student. But if there isn’t, then the student's needs come first. Perhaps you take a break and come back to the activity. Perhaps you realize that you need to increase accommodations, or adapt the activity. Perhaps you realize that you were wrong or need to apologize. All of things make you better, not weaker. Real classroom leadership comes from respect-filled relationships, not from authoritarian rules.

Meet sensory needs

Sensory needs are not a choice.

We need to create an environment that allows for sensory differences, with a variety of tools for all students to use. Basically: get out of their way. I don’t think I can ever create a plan that meets a child’s needs better than they meet them themselves. And I am wary of an unintentional emphasis on convenience to the neurotypicals. Staff discussions turns to “shaping” a student's sensory need into something comfortable for the rest of the group. Then the adult decides what, when, and where it is acceptable for the student to express their need. This isn’t okay. This is asking our autistic students to mask for us.

In my classroom, we have spaces in our rooms that students can access on their own time table. We have spaces for being quiet. We have spaces for being loud. We have a wide variety of items for fidgeting or chewing or manipulating. We allow standing, sitting in different chairs, pacing, and being in the space in whatever way works for their body. For students who don’t yet know what they need, we explore and play with these items as they discover what makes them feel safe, and how to advocate for themselves.

The biggest fear is that these things will be distracting. Or: “But then everyone will want to use it!” So? This was also the fear when classrooms started using flexible seating, but quickly teachers learned that this helps all students. If we change our classroom culture to one of acceptance and accommodation, then we can focus on meeting the needs of our students instead of eliminating distractions. I promise that this is so much more fulfilling.

Create predictability

This is one of those things that can be hard for a non-autistic brain to understand. So many people crave change and novelty, but our students are typically not those people. I understand the anxiety that comes with schedule changes or misplaced classroom items. These seem like little things to my friends and family, but they don’t feel little to my body.

When we structure our classroom routines, we increase our students’ ability to show their skills. We create spaces where our students can feel more in control of their world. This doesn’t just mean predictability in our daily schedule, though that’s important. It means predictability in how we respond to our students. It means predictability in our work expectations. It means establishing clear beginnings and ends to the assignments we give. It means that we prepare our students when change will occur. It means that we empathize with them when change is anxiety-producing or frustrating. It means we never say or think, “get over it.”

Visual and text-based structures can be an incredible asset in establishing these routines, and they tend to be my most used accommodations. It can help to walk yourself through your day, your lessons, your student projects. What can be made explicit? What visual reminders can we offer? Pictures of expectations? Models of completed work? Written directions to correspond with our verbal ones? It can be as simple as a drawing on a post-it note, or as high-tech as a digital planner. It’s not about the tool itself. It’s about assessing our student’s needs and meeting them.

Adults adapt and accommodate, not students

Educators need to be the ones who change. In a world that asks autistic individuals to adapt all the time, our classrooms can be safe spaces where the adults adapt to the students for once. We can adapt the way we give directions. We can adapt our work. We can adapt our physical environment. We can meet our students’ needs first.

For example, when my students are climbing on shelves or tables, I realize that this is a sign that I need to change something. So I move furniture. I increase opportunities for proprioceptive input. I create visuals to clarify where we can climb and where we cannot. When my students are not able to stay engaged for the full duration of a thematic story, I create an adapted text. I increase opportunities for active responding. I allow students to stand and move while listening. When a student is in fight-or-flight, I don’t fall back on “but they need to accept 'no'!” I think through what I can change to decrease this stress response. I change, adapt. That’s being the adult in the room.

Teachers need to study universal design, assistive technology, and accommodations. The list of options is expansive, ranging from wait time and timers, to e-books and digital writing supports. Accommodations are about changing the physical environment through ramps, lighting, and seating. They are also about adaptations in presentation, expectations, and performance. Many of us went to school in a non-accommodating culture, making it difficult to think outside that box. Let these explorations expand your tools to meet your students’ needs. Accommodations and assistive technology are a core of my classroom; they provide equity and access. Access to general curriculum, to general education classrooms, to community activities, and so much more.

The future is accessible—if we work to make it so.

Ask yourself: why?

This question is crucial.

Before you decide which skill to teach or that a “behavior” must be changed, ask yourself why.

Unfortunately, when many of us dig deep, the answer is too often tied to neurotypical norms of behavior or development. There are still research dollars being spent to eliminate stimming. Why? Because it looks different. Social skills groups exist. Why? Because we want social interactions to look more ‘normal.’ Years are spent on “greetings” or vocal imitation. Why? Because neurotypical children talk. Because neurotypical children say “hi” to people in the store.

These reasons are not valid. It’s okay for our students to stim. It’s okay for their conversations to look different. It’s okay for them to want to share their passions. It’s okay to not say hi.

We need to focus our attention on the skills that our students want, on skills that will increase their quality of life—while allowing them to be their beautiful, autistic selves.

Special education spends so much time on “functional” curriculum and “social” skills. Yet how much time do we spend on some of the most functional skills: real literacy instruction? Number sense? Self-advocacy? Projects that allow our student to explore and expand on their passions?

And—importantly—how much time do we spend teaching neurotypical students the skills they need to be better friends to their disabled peers? On creating a classroom where the neurotypical kids accommodate the neurodiverse ones? We have been asking our autistic students to accommodate us, for decades. It’s not fair. It’s not okay. It needs to stop.

“Behavior” means something’s wrong

Let’s be clear: I put “behavior” in quotes because that word is thrown around in harmful ways with students like mine. Special education culture labels everything it dislikes as “behavior” to be reduced or eliminated. I am talking about signs of distress, such as crying, aggression, self-injury, or shutdown. These are not things to eliminate. These are not things to reinforce or ignore away.

They are signs that something has gone wrong for our students.

Ross Greene wrote, “kids do well when they can.” If they are not doing well, it means that they cannot do well. This is not a motivation or willpower issue; it’s about the environmental expectations exceeding the skills and capacities our students possess in that moment. We cannot simply track “what happens after” and manipulate the environment to get rid of things that make us uncomfortable. Life exists beyond attention, tangible, escape, and automatic reinforcement.

We must empathize with our students. We must listen to their voices. We must take note of what they gravitate towards for self-calming. We must give breaks, reduce demands, and be present. This does not mean being in their space, unless they want us to. It means that we listen, instead of trying to figure out the fastest way past a "behavior."

After the difficult moment passes, we work with our students to make the changes they need. We examine the student’s schedule, sensory environment, accommodations, and supports. We may realize that someone was not respecting our students’ voice, especially if they said or indicated "no." We may find that someone was suppressing stims and other coping skills that our autistic students need. We may need to intersperse more frequent breaks, or provide access to a different tool (e.g., text-to-speech, AAC, flexible seating, priming, visual outlines, or a million other strategies). The bottom line is that we adapt and accommodate, not eliminate.

We also make sure that we work with their families to ensure they are getting the medical support they need. Autistic pain is all too often ignored. My own daughter spent a year with medical professionals ignoring her needs, before a team was willing to hear her voice and treat her pain. Most autistic children and adults go far too long before someone listens.

We must do better

I have been a student in a system that didn’t hear me. I remember crying on the floor. I remember that ache from having unmet needs. I remember the exhaustion of masking so intensely, every day. And that was with the privilege that comes speaking and doing well academically… It is all the more painful for our students who are excluded completely from both school life and academics.

So this is how we be the teachers our students need: listening. Listening to autistic voices. Listening to their voices. They will tell us what we need.

Saturday, September 14, 2019

Distorting DEEJ: Deconstructing A Misinformed Literature Review

Production photo of David Jame Savarese (Deej), a thin white male  with short, cropped hair and glasses, wearing a light blue polo shirt and beige  slacks, seated at a table facing his girlfriend who is seated in a power chair  back to us, facing  him. A man holding a camera is standing to their left and  caught in the act of filming them. ©DEEJ movie www.deejmovie.com/press
[image: Production photo of David Jame Savarese (Deej), a thin white male
with short, cropped hair and glasses, wearing a light blue polo shirt and beige
slacks, seated at a table facing his girlfriend who is seated in a power chair
back to us, facing  him. A man holding a camera is standing to their left and
caught in the act of filming them. ©DEEJ movie www.deejmovie.com/press]

Kerima Çevik

"A distinguishing feature of scientific thinking is the search for falsifying as well as confirming evidence. However, many times in the history of science, scientists have resisted new discoveries by selectively interpreting or ignoring unfavorable data." Wikipedia on Confirmation Bias

I understand that professionals who aren't familiar with autism and autistic lived experience may carry biases about non-speaking autistic people. I don't accept it, but I understand it. We're human and all of us have biases. When bias becomes a problem is when academic work begins with a conclusion, for example that non-speaking autistic people must be presumed incompetent. I get seriously disturbed when scientists who know better lay out academic work to support a bias. It is personal to me, and so hurtful that I felt the need to write why.

I am an African American woman. What that means is that I and everyone who shares my race continue to be targets of something called scientific racism. Scientific racism, at its core,  is misusing scientific structure and scientific reasoning to support false claims of racial superiority in general, and was one way of oppressing Black people in particular—which makes me more alert to this kind of bias when I see it used against other marginalized groups.

I am also very outspoken about the unjust treatment of autistics like my son. Full disclosure, my son is non-speaking and uses an iPad with the app TouchChat HD as his primary communication support, as part of his multi-modal communication system. He does not use FC (Facilitated Communication) or RPM (Rapid Prompting Method). But for anyone who doesn’t know any better and is watching an AAC (Adaptive and Augmentative Communication) user in a documentary, my son and someone who used those communication methods would look similar.

Representation of true non-speakers in the media is usually limited to inspiration trash or objectification to gain funding. That is why it was gratifying to see DEEJ, an award-winning documentary about DJ “Deej” Savarese, an AAC-using non-speaking autistic adult with complex support needs. This kind of representation for us people of color—outside of stereotyping in media—also began with movies, television series, and groundbreaking documentaries. There is no acceptance in a society where groups of people are not represented as three-dimensional human beings. I watched DEEJ and came away feeling it had earned its awards.

So when Social psychologist Craig Foster's article, "Deej-a Vu: Documentary Revisits Facilitated Communication Pseudoscience" was published in Behavioral Interventions in August of this year, I read the title and flinched. Not looking forward to doing so at all, I acquired and read the review. This is what I learned:

Foster's background is not in the diagnosis, care, or treatment of autism. He does not have a background in speech pathology or Augmentative and Alternative Communication (AAC). Foster's focus seems limited to skepticism and concussion non-disclosure research. I wonder why he chose to write about DEEJ? He could have simply done his review on the history of Facilitated Communication (FC). Instead, his deliberate targeting of Savarese by compiling any negative literature on FC he could find comes off as a reductive approach to the documentary DEEJ, as well as one that aims to erase the film’s actual message of inclusion and representation.

Perhaps Foster is uninformed about the catastrophic role psychologists have played in the history of autism. From Asperger’s alleged Nazi collaboration, to the debacle and destroyed lives of Bruno Bettleheim’s expansion of Kanner’s “refrigerator moms” view of autism, to Ivar Lovaas and his conversion therapy cruelties, psychology has continued to destroy autistic lives. I’d like to say this has changed, but autistic children are still being given electric shock punishments at the Judge Rotenberg Center “for their own good.” With this kind of track record, the task before these professionals should be to regain the trust of their non-speaking autistic clients and their families. But here, Foster singles out a non-speaking autistic and his family to push the regressive idea that we must be skeptical of any non-speaking person's claim to competence.

Foster's review tries to rebrand the DEEJ documentary on inclusion as some sort of infomercial for FC. He claims he was filtering and inserting FC as a topic, so skepticism could be placed in the minds of those evaluating the film. I find this unnecessary. If the viewer doesn't know what FC is, what they would see in the film is someone using pads, laptops, and in some cases, pen and ruled notebook pads as AAC support. When I viewed the film, I simply accepted the equipment as AAC support because the film made no effort to explain otherwise. FC was not the focus of the film, so it was neither emphasized nor discussed.

Foster's review cherry-picked only the scenes from the documentary showing the use of supported typing. He speculated about Deej's intelligence and competence to produce speech through AAC devices without having met, assessed, or researched anything about Deej, including how Deej communicates with support staff when they have not trained as FC facilitators or even how the Dynavox narrations were achieved in the documentary. Instead, Foster uses select scenes to conclude that Deej communicates entirely via FC, therefore, he must be presumed incompetent. There’s no mention of whether Foster followed up with anyone to verify his conjectures about the nature of Deej’s education, interactions with support staff, communication methods, or achievements.

I decided to do what Foster hadn't done. I reached out to the Savarese family. I learned from Deej himself that he has had 52 teachers, 22 professors, 18 school support assistants/facilitators, 15 after-school assistants, 5 speech therapists, 4 occupational therapists, and 6 principals in 2 different school districts over 18 years. To my knowledge, Foster did not interview any of them. Foster commenting on Deej's diagnosis and the scope of his intelligence was a misuse of scientific reasoning.

To prove his point about FC, Foster also ignored scenes that complicated his thesis, like the scenes in which Deej toured Washington D.C. with his cousin. Deej's mother leaves a notepad of scripts with printed words so that the cousins can communicate by having Deej point to responses to any query by his cousin. Meaning Deej toured DC without a facilitator and communicated without FC. When Deej begins his pioneering attendance at Oberlin, he has support staff who are not trained in FC who help him transition. Yet Deej is seen making transitions and participating in activities that indicate competence. His efforts to self-regulate in response to his parents' requests for him to try and self-calm show receptive language acuity—he clearly understands what people are saying to him—and the cognitive competence to overcome moments of anxiety that might normally end in autistic meltdown or shutdown.

If Foster's literature review was stripped down to his analysis of Deej's competence based upon his viewing of a 72-minute documentary, Behavioral Intervention would have received intensive backlash for violation of section 7 in the American Psychiatric Association's (APA) Principles of Medical Ethics, otherwise known as the Goldwater Rule. The Goldwater Rule was put in place to keep mental health professionals from conjecturing a diagnosis of a public figure's competence without proper in-person examination and assessment. I believe that targeting the documentary, then using negative and sensationalized literature on FC as a weaponized tool to justify this sort of armchair diagnosis, is a violation of the Goldwater Rule by proxy.

Filtering and presenting this film as if its entire purpose was to promote FC is inaccurate at best. By forcing academic focus away from the documentary's themes of interdependence, inclusion, and the presumption of competence, Foster does harm not only to the FC community but to people like my son who continue to suffer maltreatment because of the same scientific ableism that produced Foster's review.

As we have no accurate way of measuring intelligence without language proficiency, and literacy is often denied to non-speaking individuals without AAC support of some kind, can any psychiatric professional generalize the latent intelligence of non-speaking people with intellectual and developmental disabilities (ID/DD)? Yet this is exactly what Foster does when he posits,"Other aspects of the documentary suggest that FC's purported ability to reveal hidden intelligence is once again illusory. When a speaker calls Deej's name for a National Honor Society ceremony, Deej's mother needs to prompt Deej to walk to the stage.

I confess I paused here and burst out laughing. Foster obviously doesn't know anything about autistic processing delays, or what event crowds, camera/cellphones flashing, and the roar of applause does to someone autistic in public spaces regardless of their degree of disability. Deej's disorientation during this event is unremarkable. He's autistic! His response was a completely natural reaction for any autistic adult. In fact, this is why his father’s surprised reaction and verbal exchange between his parents ended in their rushing to provide support. Just because an autistic person wants to try to get through a high-stress event on their own doesn't mean support persons shouldn't be there in case things go wrong. Foster's mistaken analysis of this scene does not support his thesis. It simply verifies that David James Savarese is an autistic adult who reacts as any autistic adult would in a similar situation.

Foster plows ahead with his thesis: "When Deej and his mother pack to move to Oberlin, Deej's mother explains to Deej that some clothes are too small—he keeps them for sentimental reasons. Moments like these are easy to miss, perhaps because it is easy to forget the expectations that the documentary sets for Deej. These moments might seem compatible with a young man who has autism with complex communication needs, but they do not seem compatible with a young man who has earned his enrollment in Oberlin College."

Again Foster's lack of experience with autistic people and literature about autistic life experiences is evident in this paragraph. Just last month, a mother went through great lengths and succeeded in getting a larger size of the only dress her autistic daughter would wear. Presenting a common autistic behavior—intense attachment to meaningful objects—that is typical regardless of communication or support needs as evidence of incompetence doesn't really stand up to scrutiny.

Even if we remove Deej's disability from his desire to keep clothes he's outgrown, Foster would still be off the mark in his conjecture. Many of my high school classmates left home for college with stuffed animals, dolls, favorite clothing they had outgrown, even baby blankets that held special memories for them. No one claimed this proved they were not competent to earn their places at their universities.

I have questions about Foster's superimposing negative FC literature on the mention of sexual abuse in the documentary as well. He said: "Messages about human sexuality also reflect old problems with FC. Facilitated communication has generated accusations that specific persons have molested FC users sexually. When subsequent investigations failed to support the FC-generated accusations (e.g., Siegel, 1995), it forced additional consideration about who was doing the accusing: the user or the facilitator? Likewise, when Deej's computer-generated voiceover states “I see scary people who want sex” and his poetry refers to prostitution, viewers should wonder whether these words reflect Deej's perspective on sexuality or a facilitator's speculation."

Let's address the topic of FC-generated false reporting of sex crimes. Foster cites Siegel, 1995. But he doesn't mention that this brief used only two subjects and did no general statistical analysis comparing the number of FC generated false reports to the number of false reports of the same crimes in the overall population. We all agree that the risk of a false indictment is dangerous. But we have no statistical understanding of how FC related false indictments compare to non-FC related false indictments. I am trying to understand how Siegel can generalize, or come to any conclusion from, her sample of two subjects, that the risk of false reporting/indictment is higher or lower than the general population. Siegel found that communication wasn't established in these two subjects.

How can one confirm or deny anything without establishing communication with either subject? Dr. Siegel does not employ any other method of communication (a yes/no switch for example) to try and establish a baseline. We do not know if Dr. Siegal had the specialized training for this type of investigation. We don't know how many interviews the two subjects were made to submit to because of their use of FC. Foster cites Dr. Siegel without mentioning her first sentence in paragraph 3 of the discussion section on page 325 where she states: "This study does not rule out the possibility that there are individuals who may communicate via facilitation when they cannot communicate orally, via sign language or via communication boards." Indeed it cannot rule out the possibility because only two subjects were evaluated.

We are currently witnesses to the extremes of skepticism against science. I am concerned that approaching topics like FC that require longitudinal study, with confirmation bias like Foster’s, will push public opinion further away from the scientific community.

Foster's brief exploration of Deej as a vehicle for encouraging improper forms of scientific reasoning confused me. He says, "Deej, the person, is not necessarily representative of the diverse group of people who have complex communication needs. Even if Deej were to demonstrate hidden intelligence, it would not prove that hidden intelligence is widely prevalent. This hasty generalization could be akin to making a documentary about Lionel Messi and suggesting that Argentinians are incredibly talented footballers. Hansson (2013) described the use of hand-picked examples as a "characteristic associated with pseudoscience."

But isn't Foster himself hand-picking examples of Deej's documentary and lived experience to frame his own thesis in this review? Does Foster's literature review then fit Hansson's description of a characteristic associated with pseudoscience? Or is this further evidence of confirmation bias in Foster's review?

I can't stress enough that Foster's statements reveal a lack of understanding of the challenges faced by non-speaking AAC users of any kind. When he said, "Still, evidence that Deej can communicate hidden intelligence independently is simply not there," I again feel Foster is evaluating from his armchair without factoring the impact of autistic comorbid conditions and characteristics in his conclusions. Again Foster has no qualitative research on Deej to back up his assertion.

Foster's unconcerned opining of Deej's degree of disability is very similar to the racial bias found in medical doctors. I actually feel that if FC wasn't part of the DEEJ documentary at all, Foster would have still approached his literary review with the presumption that Deej was incompetent, given his statment, "The documentary instead provides explanations for the lack of independent communication that follow the explanations provided by FC supporters generally. Deej's computer-generated voiceover states that no assistive device can do what his mother does and that sometimes he experiences anxiety that disrupts his ability to communicate."

I disagree with Foster's implication that Deej is discussing his mother's role as a facilitator alone. Foster does not mention the scene in the film when Deej's grandparents tell his mother that she is the only consistent thing in Deej's life during his stressful transition from the home he's known most of his life to another state and an unknown university campus. Deej, in essence, loses everything from proximity to friends who have known him since early childhood to his father who can't be with them during this transition. Foster also excludes the fact that by the end of the documentary, Deej has transitioned to the Oberlin dorms, and his mother's role is reduced to simply managing his support team. The documentary mentions Deej’s relief at having his mother return to the role of just being his mother.

I want to talk about Foster's mention of the use of a pen as a prompting object to direct Deej's typing. There is tremendous hypocrisy in how psychologists compare their own methods to those used to support typing. Hand over hand techniques and other invasive prompting is common practice in Applied Behavioral Analysis (ABA). ABA is the only therapy for autism with mandated insurance coverage in most states despite valid ethical concerns verified by recent research into ABA and PTSD in autistic clients. Behavioral psychologists do not claim that any writing done by hand over hand prompting is abusive of autistic clients. If you ask a behavioral psychologist why they are using hand over hand prompting they will tell you that the goal is to fade the invasive prompting over time so their clients eventually write independently. It is hypocrisy for psychologists to champion such methods, while dismissing the support of individuals who have physical barriers to typing.

While Foster included a non-apology to Deej's family consistent with his policy on respectful skepticism, any heartfelt sincerity in such apologies is lost if those delivering them are undermining a human being's right to be accepted as a competent contributing member of society while doing so.

And Foster's flawed literature review, unfortunately, introduces a taint of confirmation bias to any future publication he pens on this topic. The documentary DEEJ deserves better and so does Deej Savarese himself. I recommend that anyone viewing DEEJ watch the film with an open mind. No one's filtered view, including mine, should interfere with the sharing of one human being's story of adoption, freedom, and hope for his marginalized peers.