Why I Said “ASAN isn’t perfect” (aka “Building an Interdisciplinary Dialogue between Neuroscientists, Psychiatrists, Parents, and Autism Advocates is really hard work”)

Part I: Why I’m Writing This Post

Last week’s post about ASAN’s statement against the Combating Autism Act shattered the record for page views on this site. I was kind of overwhelmed by how many people who had never met me, many of whom were autistic themselves, reblogged my post and thanked me for writing it.

That was really gratifying to hear because even though I identify as neuroatypical (or neurodivergent, whichever term you prefer) because of my ADHD, I do not (and cannot) claim to speak for the autistic community or the autism parent community in any way.

But I believe that everyone should have a say in what kind of medical interventions their bodies are subject to and that the biomedical establishment does not spend enough time talking to autistic people about what kinds interventions they’re comfortable with.

My opinion is the product of endless hours and sleepless nights where I was reading writing by autistics on their autism and worrying about what would happen to my little brother. (Even though he’s obviously a very smart kid, he has a lot of trouble dealing with the world and all its chaos.) I love my brother, and I want to stick up for his right to choose how his neurological difference is managed (or “treated” or “medicated”). Even though I can’t know what it’s like to experience the world as an autistic person, I can write essays a lot faster and empathize with skeptical non-autistic audience a lot more easily than my brother can. I also have spent a lot more time studying science and hanging around with scientists than most autism advocates, so I can empathize with the researchers, too.

All of those qualities combine to give me an interdisciplinary perspective on autism research and neurodiversity research that few people can muster.

That’s why I write about this topic so much; I worry that if I don’t make my views and opinions and concerns known, no one else will.

But I also know that my perspective makes me a bit of an outsider in the dialogue around how we manage autism.

I’m not someone who has to make the tough calls about whether or not my autistic 3-year-old should be taking medications or undergoing interventions that might improve their chances.

I’m not someone who struggles with language or abstract categories or understanding that when I scream and cry, it upsets people around me. I have never been told that my ADHD needed to be “cured”, even though it is a fundamental aspect of how my mind works. I’ve never had my talents dismissed as “idiot savantism”. I’ve never been told that I’m incapable of forming a “theory of mind”.

I’ve had it easy.

But I still have a lot to say.

Part II: “What’s wrong with ASAN?”

I got this question from like five different people on Facebook, on Twitter, on Reddit, and in real life in response to a line in my previous post where I said, I don’t think ASAN is perfect. But they deserve to be heard.”

People wanted me to elaborate, so here goes:

I think ASAN is f***ing awesome. I really do. They are inclusive, they have a take-no-prisoners attitude, and most importantly, they are a group of eloquent and assertive autistic individuals who are brave enough to speak up about their experience in a culture where many people dismiss the idea that autistic people even have experiences. You should listen to them.

But I do think they have an Achilles heel in that they don’t seem to have very many ties to the scientific community.

When they do bring up science, it’s usually in the context of “medicalization is more harmful to autistic people than most people in the scientific community realize.”

While I agree that harmfulness of medical terminology is incredibly important to discuss, I think that in order to have a productive conversation with scientists about research, you have to take the time to learn about the definitions and the history of the scientific terms in play, the conventions of how scientists talk to each other, the political and economic factors that influence the way scientists frame their research (ASAN and other groups run by autistic groups are definitely not the big funders of autism research), and the limitations of the scientific techniques that are currently available.

When it comes to citing their sources and talking about healthcare, ASAN is much more factually reliable than Autism Speaks. (Autism Speaks hasn’t even bothered to distance itself from the anti-vaccine crowd.) However, dialoguing with scientists just doesn’t seem to be on ASAN’s agenda.

When it comes to taking politicians and caregivers to task on their habit of ignoring autistic adults and pointing out the ways our culture devalues the lives of autistic people, no one is more eloquent than ASAN president Ari Ne’eman. No one.

He always is spot-on when he critiques the NIH for only allocating 2.4% of its autism research budget toward service-related research. We need research that will help provide services that will help autistic people complete their educations and find jobs. That’s not negotiable.

However, when I heard him speak at Harvard Law School, there was one part of the talk where he almost lost me. He was talking about how only 1.5% of the NIH autism research budget goes toward research on adults with autism (which I agree, is a disturbing low number). His comments threw me because when he was critiquing the way scientists focus on early childhood development of autism and the genetics of autism, he seemed to think that it was part of the same “cure”-fixated rhetoric that motivates Autism Speaks.

Now, these comments were off-the-cuff as part of a roundtable discussion, so I’m not going to pick apart what he said too much. But I do remember sitting there thinking, “But, but.. when you’re trying to figure out the molecular biology of a particular condition, sequencing the genes is almost always the first thing you do. You can’t isolate the protein responsible for the altered function without finding the gene first.”

Finding the proteins that are over-expressed, under-expressed, and/or mis-folded in autism is very important, because identifying affected proteins is how you figure out which chemicals are likely to be useful as drugs. In science, we call it identifying drug targets, because ideally, you want a drug that will only interact with the specific protein that is causing problems in affected cells.

If you wanted to develop a drug that would help reduce the stress of sensory overload without “eliminating” all autism symptoms, you would want to know which specific protein variants are unique to the brains of people who experience sensory overload.

If you do not sequence the genes and identify the proteins that are involved in the symptoms you are interested in, you are stuck with the old-school psychiatry model of just throwing random drugs at people with neurodevelopmental variants and seeing which drugs appear to reduce the symptoms you want to “get rid of”.

That process of drug development through trial and error is, in fact, how we got drugs like Ritalin and Adderall for ADHD. Both autism and ADHD are psychiatric diagnosises, meaning that the diagnosis is made based on observations of behavior rather than looking at biological markers. We still don’t know what neurological features cause ADHD or autistic behavior, and even though we know stimulants like Adderall and Ritalin increase synaptic activity throughout the brain and somehow reduce the amount of ADHD behavior medicated people exhibit, we still don’t know why those drugs reduce ADHD behavior.

The fields of psychology and clinical psychiatry come under a lot of fire from neuroscientists precisely because they dole out diagnoses and prescriptions without describing the underlying biology that drives neurodivergent perception and behavior.

This lack of neurobiological rigor is also one of the main justifications people use to back up claims of “ADHD doesn’t really exist” or “ADHD is just a condition that the pharmaceutical industry made up in order to make more money.” I think the people who make those claims suck, because arguing about whether ADHD is “real” or not distracts from the fact that we need medications that target ADHD behaviors more specifically.

Ritalin and Adderall are blunt instruments that affect your central nervous system across the board and induce a number of unnerving side effects. Many people think that children shouldn’t be taking them, regardless of whether they have a diagnosis and whether the kids want to have their ADHD medicated. I would hate to see autism fall into the same trap of controversy around imprecise medication.

The way you push back against that imprecision, if you’re a scientist, is by sequencing DNA, doing assays for specific protein variants, and observing how neural patterning develops in young infants (before a lifetime of experience and environmental exposure adds confounding variables).

Of course, those are also the research strategies that curists and people who favor early interventions are most partial to.

But a scientist who focuses on the genetics of autism may not necessarily be focusing on genes for the same reasons that a non-scientist Autism Speaks supporter does.

It’s also important to remember that the curists and the early intervention crowd control a lot of the research money, so it is in a neuroscientist’s best interest to frame their research as having the potential to lead to a cure. Embracing neurodiversity advocacy would be much riskier for graduate student who wants to run their own neuroscience lab someday than it is for me, because they may need to apply for grants from Autism Speaks.

I think that any discussion of what scientists’ aims are and how research funds should be allocated has to at least touch on those issues in order to be considered complete.

ASAN doesn’t do that kind of thing very often, and even though they are the best advocacy group around when it comes to social justice, rethinking history, and pushing for policy changes, I don’t think they’ve learned how to include scientists in the dialogue yet.

ASAN is doing a lot of work that is absolutely vital and necessary for the autistic community, but perfection is a tough standard to live up to.

Part III: Scientists (and science writers) sometimes have trouble with social justice stuff, too.

The best place I’ve found to go for intersectional neurodiversity dialogue that includes scientists is Thinking Person’s Guide to Autism. It’s written and edited by a community of writers, scientists, and science journalists, most of whom are either autism parents or on the spectrum themselves. The best known of them is probably Emily J. Willingham, who has a doctorate in biology, writes a blog about autism parenting on Forbes.com, and edits an online science magazine about women’s issues called Double X Science.

But even Thinking Person’s Guide to Autism has its faults. The other day I saw a couple of tweets going between Steve Silberman, a science and technology writer who is working on a book about the history of neurodiversity and Thinking Person’s Guide to Autism that really freaked me out.

Silberman was giving a pat-on-the-back Tweet to Jeffrey Howe a former colleague from Wired, who recently got an article about his response to autism advocates published on the New York Times parenting blog and reiterating the idea that the autism advocates and the autism parents community should strive for unity.

The thing is I thought that  Howe’s post was basically a “bait-and-switch” that promised a more sympathetic view toward self advocates in the first few paragraphs but ended on a note than only exacerbated the divide between the autism self-advocates and the allistic parents community.

Howe had written a piece about the healthcare expenses associated with his son’s autism back in May 2013, and it offended a lot of autistic people.

After seeing some of the responses from upset advocates, Howe began to reflect on how his preconceptions about autism might have colored his journalism. “In writing the article, I had blithely (stupidly) failed to consider that part of my audience would consist of adults on the autism spectrum,” he wrote. “Some of them were angry with me. Many, however, were simply hurt. Not just by me but also by every neurotypical journalist who describes people like Finn as burdens to be mourned, rather than as challenges to be managed, as we manage all the myriad hardships we happily overcome for the sake of our children.” So far so good.

But then in the second-to-last paragraph, he pulls this line out of his hat: “I hope that autism advocates accept that [autism parents] require every meager word at our disposal to describe our unique experiences.”

Followed by: “ Do I want to ‘cure’ my son? It would be like sending E.T. home. And we quite like having him here with us on this foreign planet, the culture clash notwithstanding. The plain truth is that raising any child …is indescribable. Let us accept words for the blunt, imperfect tools that they are.”

Umm..excuse me? I know that the parents of autistic children face daily pain and frustration that a childless whippersnapper like me could never wrap their head around, but…

In my view, Howe’s piece actually reinforced the divide between autism advocates and parents, because he seemed to be saying, “I feel stupid for never considering the possibility that autistic adults might be offended by medical language that makes autistic people sound helpless. Now I have considered it, and I think the autistic self-advocate community should learn to stop being so offended by those words, because my feelings about my son’s predicament are so intense.”

(There’s a certain word that pops up in social justice dialogue that describes this phenomenon. It starts with a “p” and alienates a lot of the people who most need to hear about it, so I’m trying really, really hard to avoid using it…but I feel like Howe is triple-dog-daring me to use it. )

[TW- language] If parents are allowed to use any word they want to describe how frustrated they are with their child, what’s to stop them from using the word “retard”? Or the phrase “stupid cunt?”

I cannot imagine a New York Times article responding to backlash from the feminist or racial justice communities ending with the conclusion that “Well, those of us who have to take care of this disempowered community suffer from unique stresses and pains, so even though the labels we use are ‘blunt’ and ‘imperfect instruments’ that offend large swaths of the less empowered community, we, the empowered labelers, still need those words because our experiences are so difficult to describe.”

I also cannot imagine a piece like that being called “thoughtful” by someone who is writing a book about the history of social justice in said community.

But this is what popped up on my Twitter feed the other day:

Screenshot (2)_edited

I, for one, can conceptualize combining the neurodiversity and medicalization perspectives pretty well. Combining them will take a lot of work; autistic people will have to learn about how scientists frame their research questions, and non-autistic people will have to learn to treat autistic people as human beings who can speak for themselves and make decisions about how intensively they wanted to be medicated.

Frustration and a desire to help someone who outwardly seems helpless do not justify the use of the “n-word”, the “c-word”, the “r-word”, or even the word “cure”, and the fact that Howe doesn’t seem to acknowledge that really creeps me out.

Telling the less empowered group in a dialogue that they just need to accept that words are “meager”, “blunt”, and “imperfect” but that the more powerful group still needs them is itself a form of stonewalling.

He’s basically telling the autistic self-advocates that if they want their “Nothing about us without us” slogan to apply to their medical treatment options, they have to stop being offended and simply accept whatever terms appeal to the parents.

That is why autism self-advocates sometimes don’t want to talk to doctors and scientists and parents.

To be clear: Steve Silberman and the people behind Thinking Person’s Guide to Autism are smart, eloquent, educated people, and I support their work. I just think they should have been reading the pieces they were retweeting more carefully.

tl;dr:  Social justice and neuroscience/psychiatry are both complex dialogues. It takes time and dedication to become literate in either, but we badly need more people who are literate in both. Otherwise, neurodivergent people are screwed.

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10 thoughts on “Why I Said “ASAN isn’t perfect” (aka “Building an Interdisciplinary Dialogue between Neuroscientists, Psychiatrists, Parents, and Autism Advocates is really hard work”)”

  1. ASAN does have some ties to the Scientific community. I’m not saying they are a primary focus, but one of the co-founders (Scott Robertson) studied bullying (not sure what he’s working on ATM), and Steven Kapp was a scientific adviser for a while before some of his obligations elsewhere needed more focus. There are others but I know the two above personally. (I’ll send Steven a link to this post- regardless of if he wants to talk about ASAN stuff, I think he’ll be able to have a decent conversation about the science stuff? Better than I can anyhow- I’m more of a history/anth/sociology person)

    Additionally ASAN recently co-hosted an event on Bioethics for disability rights folks in order to give advocates information about what the Bioethics community is doing in order to be better advocates. (Unfortunately when it comes to this topic, there’s a huge and terrifying difference between the lived realities of PwD and what is common thinking in the field- not just autistics vs that field.) http://dredf.org/drlib/

    Just figured I drop that stuff in there. I got a ping back to my blog so I figured “well, I’m not particularly science-y enough for the main discussion but I can connect people in who are…”

    1. Thanks for pointing that out! 🙂

      I was mainly going off of looking at the ASAN front website where the “About us” and the “Policy” sections are, and noting that there didn’t seem to be very much science stuff front and center.

      Also, I should probably clarify that this isn’t an ASAN-specific issue. The scientists tend to clump together and mostly talk to the other scientists, while the not-scientists mostly talk to the other not-scientists in pretty much all of the organizations. I just think that people need to work on dialoguing with people in different disciplines more.

      1. While science isn’t necessarily a primary focus of ASAN’s work, ASAN did host the Symposium on Ethical, Legal, and Social Implications of Autism Research in December 2011, which brought together many leading researchers in the scientific community in dialogue with leaders in the autistic community. YouTube has videos of the entire event (with captions!).

  2. Some more information on ASAN’s ties to and dialogue with the scientific and medical communities follows. I include examples related to clinical science and practice or applied medicine, rather than basic science only, because of your post’s broader focus on the relationship between neurodiversity and medicalization.
    – The Academic Autistic Spectrum Partnership in Research and Education (AASPIRE), co-directed by Dora Raymaker of ASAN and Christina Nicolaidis, MD, does community-based participatory research: http://aaspire.org/. Its Healthcare Toolkit project is funded by the NIMH: http://aaspire.org/?p=projects&c=hctoolkit, an example of the possibilities of neurodiversity-compatible medical research funded by an organization that aims to cure autism. (I have worked on this project as a member of AASPIRE’s Community Council.)
    – ASAN has worked actively on the revision and implementation of the ASD diagnosis in the DSM-5, including by forging relationships with members of the Neurodevelopmental Disorders Workgroup that revised the diagnosis for the American Psychiatric Association. As a PhD student in psychology who researches autism, I led the science of this advocacy, e.g. as the main author of this empirically based policy brief: http://autisticadvocacy.org/wp-content/uploads/2012/06/asan_dsm-5_2_final.pdf Following its literature review on related issues, the brief recommended some but far from all of ASAN’s recommendations for changes to the proposed criteria. We secured many of our recommendations for both the main and accompanying texts.
    – Of course it is a complicated topic, but to some extent I think ASAN agrees that neurodiversity and medicalization perspectives can be combined. For instance an essay I wrote in one of ASAN’s handbooks placed neurodiversity at the intersection of the social and medical models of neurodiversity:
    http://autisticadvocacy.org/wp-content/uploads/2013/08/Empowering-Leadership.pdf (essay starts on p. 104). The essay on research that follows it is relevant as well; I did put together a reference list in addition to the published citations, but they accidentally were not printed. I can send them to you if desired though. So yes, ASAN is not perfect.
    – You can find the YouTube videos of the ELSI symposium (which received federal funding and occurred after NIH’s own ELSI workshop on autism research) Lydia referred to here: https://www.youtube.com/watch?v=ziCsNWZmONA&list=PLA24C3FA61E387A2E
    – Ari served, and Scott Robertson serves, on the NIH’s Interagency Autism Coordinating Committee.

    This is not a comprehensive list, and I do not know of what you were already aware, but I hope this helps.

  3. As far as treatment-related issues like genetic research for specific drug development, or where research on early intervention and underlying biology may relate to ASAN’s agenda or align with neurodiversity, I do not wish to speak for Ari but I would be happy to chat with you on the general topic (by e-mail?). I think it is too complicated to discuss here, and paradoxically I have taken so long to read your post because of trying to focus on my related dissertation. I seek to extend previous research on autism neurodiversity that I worked on (http://psycnet.apa.org/journals/dev/49/1/59/), going further into nuances such as issues you raise, to see who differs in what views toward autism, with attempts at understanding the reasons for them.

    1. Sorry for the delay approving these comments. Spambot filter doesn’t work well, and haven’t had a chance to go through these comments manually until today. :-/

  4. I’ve talked to Ari Ne’eman on Twitter a bit and he seems very enthusiastic about a specific sort of research: large-scale surveys. These are much needed, and hard to do well. Ari Ne’eman seems aware of the challenges of conducting a representative survey, and of the need to partner with people with experience with this sort of methodology.

    However, what I’d like to see that seems to be missing is for
    groups like ASAN to partner with researchers using methodologies that are not self-report. I think the lack of…well…scientific methods in projects like AASPIRE is what gives people the idea that ASAN holds science at arms’ length. Psychology and neuroscience researchers have developed very refined methodologies for looking at how people process sensory information and regulate physiological arousal. These would be useful for understanding what causes sensory sensitivities and how to manage them. It isn’t right that neurotypicals get the rigorous methods for investigating sensory processing and the rest of us get the Sensory Profile and similar questionnaires. I’ve talked to researchers who want to bridge this gap between sensory experiences and psychophysics. ASAN and other advocates should team up with them. Surveys and interviews can tell us a lot of things, but they’re not very good for understanding cause and effect. Does anyone know if ASAN plans to move in such a direction in the future?

    And wow, that Jeffrey Howe piece. It bothered me so much I actually wrote a response, but he probably never saw it. http://mosaicofminds.blogspot.com/2014/05/an-open-letter-to-jeffrey-howe.html

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