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