Monday, October 7, 2019

It’s Time For Autism Research To Do Better By Autistic People

P1280182
Photo: Charlene Croft | Creative Commons / Flickr
[image: hand of a person with light skin arranging long
red, green, and yellow construction blocks in a line.]
Shannon Des Roches Rosa
@shannonrosa

Autism research is mostly failing my teenage son and his autistic community. Saying something so forthright may seem harsh, but this is the Greta Thunberg era—and we’re now telling people what they need to hear, not what they want to hear.

I've been going to autism science conferences and scrutinizing autism research for nearly a decade, and during this time most autism studies have remained mired in areas like causation—a pursuit that does absolutely nothing to improve the lives of autistic people who are here already.

Even more frustratingly, when research does address the needs of existing autistic people it does so with the goal of "intervention," rather than focusing on quality of life, and largely neglects those like my son who have intellectual disability and/or communication disabilities.

My son is here now. I want autism research to focus on giving him the best life possible, not on trying to erase him, or change him into a non-autistic person.

What is behind this research disproportionality? Most organizations that pour money on autism research, such as Autism Speaks, The Simons Foundation, and The Autism Science Foundation, are neither autistic-led nor -informed, and frame autism as a problem to be eradicated rather than considering how autistic people and their families can live the best lives possible. As Autistic advocate John Marble commented,
“When it comes to funding autism research and supports in the United States, a few wealthy funders and foundations dictate the direction of funding priorities. Their priorities are not the priorities of most parents. It’s why only 6% of funding goes to researching how to help us [autistic people and families].
This skew is also why so people many were disgruntled over the recent reauthorization of The Autism CARES Act, which funds government autism research: With the exception of minor language changes, very little has changed since non-autistic autism lobbyists overrode autistic concerns and input about the Act in 2014. As autistic advocate Sara Luterman noted:
“The Autism CARES Act is a $3.1 billion funding package that gives exactly zero dollars to any autistic-led groups or initiatives.”
And even when research is promoted as helping autistic people, it largely does not do so in substantive ways. Consider recent findings about new autism genes. We talked with science writer Emily Willingham, who said,
“The most interesting finding here is the associations they found for people who have epilepsy. That represents a medical need for targeting. They found no variants in the vast majority of this population, and almost never found shared variants between autistic siblings. If anything, that reinforces the huge genetic variability underlying the development of autism, highlighting yet again that autism arises largely from a mosaic of variants operating in a background of other physiological influences that result in the continuum of features among autistic people.  
"In most human-related research, the goal is, one assumes, some benefit for the population being studied. With the exception of some homing in on epilepsy-related findings, I don't see how studies like this benefit autistic people or how they ultimately will. They confirm that autism, like other neurobiological variants, is highly individualistic, with each feature expressed at different points along a continuum in different combinations in different people. Perhaps that takeaway might be helpful in some indirect way by confirming that although autistic people share the features that make them autistic, how they express each of them is highly individual. Otherwise, I don't see much here that's helpful for the population that's in focus.“
A cynical person might say that the lopsidedness of autism research also happens because actually connecting with autistic people who have complex and diverse disabilities is challenging, and it’s much easier to do research that imparts the beneficent glow of working on behalf disabled people without actually engaging them.

That part of this imbalance has to end, and I’m not the only one who feels this way. In discussing my concerns with researcher Dr. Deb Karhson—who is also the sibling of a high-support autistic adult—she remarked,
“Anyone performing human-participatory research should be engaging in praxis to better address community-defined needs and to better understand themselves as allies or preferably, accomplices. Without praxis, we are acting upon people and communities instead of acting in solidarity and in congress with them.”
And yes, besides Dr. Karhson, there are many other truly wonderful autism researchers—many of whom are autistic themselves—doing useful and good work that will benefit the entire autistic community. We interview wonderful autism researchers all the time! But these in-touch researchers are the minority, and I cannot understand why so many other well-meaning researchers work so hard on behalf of theoretical autistic people or on early interventions, rather than on the pressing and under-addressed needs of that majority of existing autistic people who are no longer small children.

Can we please start putting our research energies into where they are most needed, which is in helping people like my son and his autistic get the supports and services and education and communication systems and adaptive gear they need to live the best lives possible? Can you imagine how frustrated my otherwise happy and content minimally-speaking son has been, spending his entire life without a proper communication channel to express his thoughts and interests because the research that would lead to real-world progress in addressing the diversity of autistic communication needs isn't fully developed? What if his issue is actually a motor planning disability, and he doesn’t have intellectual disability? What if he has both disabilities? How would we know? Research rarely addresses these issues in ways that translate to real world differences.

To make progress, we need to listen to what autistic people themselves have to say about the goals and direction of autism research. Every year at the meeting of the International Association for Autism Research (INSAR), autistic people and autism researchers (and many who are both) get together to discuss autism research priorities at the AutINSAR event. Topics include under-studied areas like co-occurring conditions, underserved populations, the trauma caused by normalization approaches like ABA, suicidality, autistic commonalities, and autistic inertia and how it manifests differently in different people. Yet these topics are rarely addressed. (And please note that no one in the AutINSAR discussions is ever interested in autism causation.)

If autism research is to change for the better, we need to give more attention to organizations dedicated to autistic well being, like AASPIRE (Academic Autism Spectrum Partnership in Research and Education), and Shaping Autism Research UK's Starter Pack for Participatory Autism Research (involving autistic people in studies). Other autism research organizations need to use these orgs as models.

Research indicates that autistic brains exhibit more diversity than non-autistic brains. If autism research is truly going to address the needs of such a varied population, then it needs to branch out similarly, get real about what autistic people need, and humanize its priorities.

Thursday, October 3, 2019

Autism and Self-Injury: Talking With Dr. Rachel Moseley at INSAR 2019

Dr. Rachel Moseley and Carol Greenburg
[image: Photos of two smiling white women wearing glasses posing together.
Left, Rachel Moseley has shoulder-length light brown hair.
Right, Carol Greenburg's hair is in a platinum bob.]
Content note: This interview discusses self-injury and suicidal behavior.

Oftentimes the most rewarding findings at INSAR, the annual meeting for the International Society for Autism Research, emerge during the pre-conference sessions. We went to the 2019 pre-conference on autism and mental health and were impressed by Dr. Rachel Moseley's presentation on self-injury in autistic people without intellectual disability—and are grateful that Dr. Moseley was able to make time to talk with TPGA editors Carol Greenburg and Shannon Rosa about her research.

Shannon Rosa: Dr. Moseley, can you first tell us a little bit about yourself, and your background and affiliations?

Dr. Moseley: I’m a researcher at Bournemouth University. I did all my studying and my PhD at Cambridge. In those days I was looking more at brain differences and differences in the autistic brain, and did quite a bit of research on brain connectivity and so forth. I’ve also done a bit of research on sex differences, and various things. [laugh] So I find myself now at Bournemouth University, and I’m more interested now in mental health, also physical health, suicide, and, as you say, self-injury.

Rosa: Why did you make a choice to study people without intellectual disability?

Dr. Moseley: I think, insofar as it relates to self-injury, autistic people without intellectual disability are underserved. They’re a very misunderstood group. If you were to do a literature search on self-injury, you’ll find a lot of studies and opinions on self-injury in people with intellectual disability, but there’s very little information out there about whether autistic people without intellectual disability also engage in self-injury, and whether it would be for the same reason for autistic people with intellectual disability, and whether it would look the same as in people in non-autistic groups.

There is one very good paper by Brenna Maddox, and it was the only paper that looked at self-injury in an autistic group without intellectual disability, and it felt like, there were a few things in the paper that I really wanted to know more about, and so I thought this really needed to be further looked into.

Rosa: Okay, thank you. Can you please tell us about your research sample and what your selection criteria were and why?

Dr. Moseley: Certainly. So, I approached the autistic community with quite an open recruitment strategy, really. I did my recruiting partly online, and partly through social media, and partly through the recruitment database of the autism research center. And so, I really let it be an open invitation, really, for any autistic person, male or female or nonbinary, anything, who self-injured or who didn’t self-injure. And the sample I ended up with in the end, interestingly, was predominantly more female participants than males, which is unusual for autism research.

Rosa: Why is that unusual for autism research?

Dr. Moseley: Well. There’s, there’s a very well-known gender bias in autism research, where studies tend to include more male participants. Men and boys are more likely to be diagnosed.

Something I think is a very interesting question is, this study was obviously pitched as one about mental health. And, in non-autistic people, I think there’s a bit more stigma for men around talking about mental health. So I wonder if autistic men are similarly subject to that stigma, and if so, that raises very worrying implications. Maybe autistic men are more vulnerable for not being able to come forward, and talk about these things.

Rosa: Can you tell us what the primary findings of your study were?

Dr. Moseley: Sure. I’ll try and summarize them. We were interested in finding out more about the features of self-injury in our group, and finding out how people felt about self-injury, and also finding out what kind of things predicted self injury.

In terms of features, we found—very much like the Maddox study I mentioned earlier—that autistic people without intellectual disability self-injure in ways very similar to non-autistic people, for similar motivations, similar methods, similar age of onset, and so forth. In terms of predicting self-injury, we found a lot of things but I can summarize them. The things that seem to set apart current self-harmers and historical self-harmers from people who have never self-harmed were things like alexithymia, which is a difficulty in identifying your emotions and also in describing them to others. So people who have self-harmed had a lot more difficulty with alexithymia than people who have never self-harmed.

Carol Greenburg: Interesting.

Dr. Moseley: They also tended to have higher levels of anxiety and depression, and also higher level of sensory sensitivity.

These things were all predictive of self-harm status. What we also looked at was perceptions of self-injury in autistic people, how people thought about their self-injury, and also the kind of things they thought were important to help people and they wanted other people to know. So, a few of the things that came across were that people highlighted the importance of patience, of empathy, of non-judgment from medical professionals, professionals, and also from family members—the need for support, love, caring, and passion.

And one of the things that was very interesting was a kind of dichotomy in data between some people who were very distressed by their self-injury. They expressed for instance, “no one wants to do it,” “it’s like an addiction, not a choice,” “it’s a sign of how unwell I was,” Whereas other people were very matter-of-fact and thoughtful about it. They said “it’s a means of expression, much like any creative or artistic outlook”—that is a quote.

One person said to me, “it’s almost a positive thing because it helps me get through things, and stabilize, and reach homeostatis, which was really interesting. They said, “I can either not do the stressful thing, or do the stressful thing and use self-injury as a means of getting back to baseline afterwards.

Another quote was “Sometimes I get so overwhelmed that I don’t know how I can get through a day, so I go, I do self-injury, and seeing the self-injury helps me calm down so I can calm down and then go on with my day.” So, some people talk about it in this very functional way, whereas others are very distressed. So it was very interesting, this dichotomy, and we’ve done a follow-up study, which is currently under review.

Greenburg: What factors made somebody okay with self-injury, as opposed to what factors made somebody completely dysregulated during self-injury? Did you find out why?

Dr. Moseley: A substantive question. I think there’s so much more to be looked into. People self-injure for very different reasons, and one of the things we were very curious about, in the follow-up study, is whether types of self-injury, whether certain reasons of self-injury are more dangerous than others. Because, you see, we wondered if people who see their self-injury as very functional, who thought of it as a tool, we wondered if that kind of self-injury wasn’t as related to suicidality as the people who were very distressed about it.

But that’s certainly not what we found. We found that regardless of how people think about self-injury, it was related to their suicide risk. But we also need to dig more into this, why some people get very distressed about their self-injury, why others don’t. I suspect it’s related to the reasons they engage in it. For instance, some people were engaging in self-injury as a means of regulating high-pressure emotions like frustration, anger, or agitation, whereas others were engaging in self-injury to regulate what we call low-pressure emotions, which are depression, numbness. These were what was happening when people were saying, “I self-harm to feel something,” and there’s some suggestion that that’s more related to suicidality.

So, people who are using self-harm as a means to break through depression, that’s a red flag. And certain methods of self-injury are also more related to suicidality than others in autistic group[s].

Rosa: So the next question was going to be whether there were any findings were surprising, but it sounds like that dichotomy was very surprising. Were other findings similarly unexpected?

Moseley: I think the one that was most eye-opening to me was that no matter how a person feels about their self-injury, even if they view it in a very methodical, matter-of-fact way, this preliminary analysis suggests that even if a person doesn’t mind about self-harming—even if they think about it as no problem whatsoever—it still doesn’t make any difference to what risk they are for suicide. Of course we need to go deeper, understand more, but this, to me, was very stark. And it’s consistent with theoretical models of suicide risk, where, basically, what self-injury does is makes a person capable of taking that next step through, through, ah, increased tolerance for pain, and…

Greenburg: …and making them less scared of death.

Moseley: …by self-injuring they therefore make themselves more capable of taking that next step. So no matter how they feel about their doing it, just self-injury may increase their capacity to suicide.

Rosa: Wow. That is. [Pause.] That is really…

Moseley: Frightening.

Rosa: That is really worrisome. Well. How has your study been received so far?

Moseley: It’s been really positively received, I think, though mostly by the autistic community. It took a long time to publish, so in the meantime I made video summaries of the findings, and was in quite close contact with the groups of people I recruited locally. People were really fascinated. One gentleman learnt a new word for something that he had been struggling with for so long, which was alexithymia [the inability to identify and describe one’s emotions].

Rosa: Oh, my goodness.

Moseley: He’s never known it was a condition. And just knowing about this was so enlightening for him. It helped him so much. It's been so rewarding for me to hear how positively our research been received by the autistic community.

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

Moseley: I think the study raises very worrying implications, as you’ve said. Originally, I was thinking that it might be very helpful for professionals to be able to see particular red flags, that if a person also has self-injury, that might mean, of all people who are self-harming, there may be some who are at particular risk and therefore should be helped.

Of course, the findings didn’t support that, so, in terms with where we go with it, it really suggests that no matter why someone is self-harming, we need to be very, very attentive to them. We need to help them. We need to give them support. Obviously we need to look into this more, because this is very preliminary analysis. And there are, like I said, there are certain types of self-injury that are more dangerous than others.

But, yeah, the findings really told us that we need to take it very seriously indeed. And if clinicians or professionals find out that someone is self-harming, they do need to be very attentive to it.

The other important thing that came out of this research was the voices that we heard: what self-injury means to autistic people, and what they think would be helpful for them. Because what really came across were assumptions made about self-injury, for instance that people had a personality disorder, or that they were attention seekers—those were very distressing to them. They found it was very difficult to communicate with therapists and doctors, because they weren’t getting that understanding.

One person said, “It’s as if you’re speaking a different understanding, and the two worlds don’t meet.” So these are really important things for doctors and clinicians to hear.

And just for family members and loved ones generally, there is a need to be empathetic, compassionate, nonjudgmental, calm. Don’t freak out, don’t get angry with them, don’t get emotional, because it really won’t help.

Rosa: Okay. Wow. So, what are your next steps now? You said that you already have another paper in the works?

Moseley: We do! We have another paper in the works, and we have a couple of ideas sort of pending on grant applications,

But we have some existing studies going on. One thing we’re looking at is measures of stress. We’re interested in whether lifetime stress and certain types of stress are especially associated with self-injury, whether other variables like uncertainty and intolerance of uncertainty play into the picture.

We're interested in other angles such as the impact of how a person moves from self-injury to suicidal acts, and just trying to build a bigger picture with stress, alexithymia, intolerance of uncertainty, so we can understand about self-injury and what moves people on to actual suicide attempts.

Rosa Well, thank you so much. Is there anything else you’d like to add, or you, Carol, would like to ask?

Greenburg: Yes. Is it making too many assumptions to wonder whether there’s a correlation with self-injurers and sensory-seeking tendencies?

Moseley: This is a really, a really interesting question and I can’t answer it at present because I haven’t done the analysis.

Greenburg: Is that something that might come up in future studies? It seems like a good follow-up.

Moseley: It could do; it sounds like you think that’s a very good avenue. You know, one thing I have to say—even though I can’t answer that—but I was very interested to see sensory sensitivity play such a role in self-injury as a predictor, and one of the things that came up in the follow-up study is that engaging in self-injury for certain reasons, such as to break though depression, was highly related to suicide, and engaging in self-injury for sensory stimulation was also highly related to suicidality. But this doesn’t quite speak with sensory sensitivity, maybe. We need to look into this more.

Sensory seeking, engaging in self-injury for the reason of sensation-seeking, may not sit with those people who are sensory sensitive. They may not be sensation seeking. So we need to delve into it further. But that is such an important angle.

Greenburg: Most autistics have some kind of depression simply as a result of living in a world that is not built for us. It’s not intrinsic, but it’s prevalent.

Moseley: You’re so right, and that is why it is not surprising that sensory sensitivity is higher in self-harmers, because, basically, sensory sensitivity affects whether an autistic person is a self-harmer or not. Those who have sensory sensitivity are much more likely to be a self-harmer.

Greenburg: Sensory avoiders or sensory seekers?

Moseley: Sensory sensitivity. So we measured several aspects of sensory experience. We measured sensory seeking, sensory avoidance, and sensory sensitivity. The difference between the last two, I think, is that people who score very high on sensory avoidance try to get away from sensory situations, people who are very high in sensory sensitivity may not necessarily try to get away, but they just just experience the sensory overload. People might be high in both of those those things, but the one that was related to self-injury was sensory sensitivity. Does that make sense?

Greenburg: Yeah. It makes sense.

Moseley: It’s scary; it’s all very stark.

And I feel with you. It’s such an important area that I am devoted to. I want to take it further. And I do feel so pleased to see mental health and suicidality and self-injury be so emphasized at this year’s INSAR. This is wonderful. I’m so pleased to talk.

Rosa: Yeah, me too.

Greenburg: Thank you.

Rosa: Yes, thank you Dr. Moseley. I’m so glad that you could be here.

Moseley: Can I say one last thing? Literally one last thing, because you asked me if I could say anything else, and it would just be my immense gratitude to my participants, without whom this could not have been possible, and how courageous it was for them to talk about such a personal thing. So that is just my last message.

Greenburg: Wonderful. Well, thank you, very, very much.

Moseley: Thank you.

----

Interview transcription by Sara Liss.

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 
www.CelebrationGeneration.com
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
@shannonrosa

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."

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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.

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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.

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Interview transcription by Sara Liss

Wednesday, September 18, 2019

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

M. Kelter
theinvisiblestrings.com

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
teachingunicorn.com

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.