Why the NCSA is important for scientists

Reprinted with permission from Matthew Belmonte, PhD.

Dr. Belmont is a Visiting Researcher at the Com DEALL Trust, Bangalore, 
India, and Reader in Psychology at Nottingham Trent University in the 
UK.  This article represents his personal views.

With the academic term finished I’m just catching up on all that I ought to have written about the annual meeting of the International Society for Autism Research 2-4 May in Montreal. For me the high point was Alison Singer‘s brilliantly delivered speech at the morning Special Interest Group on Clinical Strategies for Including Severely Affected Individuals in Neuroscience Studies: https://www.ncsautism.org/…/including-severe-autism-in-neur… . Alison and colleagues pointedly described the weariness that so many of us feel after opening yet another front in a conflict that we thought that we had put behind us.

The first front has been the fight for justice: All my life I have witnessed the battle against governments, local authorities, schools and other institutions for appropriate education and participation in society. In the 1970s, long before the Individuals with Disabilities Education Act 1990 and before even the Education for All Handicapped Children Act 1975, my mother set up a Montessori classroom in the basement because no school would take my elder brother. I remember the household litter of PECS cards and sign-language manuals. I remember my brother’s shoelace-tying practice board made from old trainers, the secret thrill of finding it and mastering it before he did. I remember my father’s absences at breakfast and supper during his long drives back and forth to board meetings and hearings at the state capital. I remember learning helplessness in the face of my father’s rage and my mother’s sobs, in the throes of a marriage overstressed by autism without respite. I remember finding out so belatedly that this family life actually was not what other children experienced and was not normal. And I have looked on from a distance as my sister with her daughter has fought and re-fought these same battles. I’ve witnessed my brother dashing in the opposite direction from the door of his locked institution, a year before we finally figured out that what he was trying to tell us, without speech, is that he was being beaten daily. I’ve witnessed my parents’ guilt at having sent him there.

The second front has been the fight for beneficence: I’ve witnessed and then myself fought the battle against scientists and physicians hamstrung by ideology and prejudice. I’ve heard, in her weaker moments, the self-criticism and despair of a mother who was lectured by a physician, a psychiatrist who had read Bettelheim, “Mrs Belmonte, don’t you feel *guilty*?” I’ve seen my brother and my parents contort their lives to follow research protocols that advance scientific careers more than scientific understanding. I’ve seen families’ reports of disrupted sleep, gastrointestinal distress, and immune disease ignored for decades because autism was a disorder of social cognition. I’ve seen families spend desperate money on bullshit therapies from auditory training to immunoglobulin infusion because science was ignoring them. I’ve seen families’ stories of heightened affective empathy dismissed because people with autism are impaired at (cognitive) empathy. I’ve seen case reports of independent keyboard communication dismissed because people with autism, whose cognitive, perceptual and motor dyscontrol mean that they can’t look and think and do at the same time, “aren’t even looking at the keyboard”, because proponents of typing methods don’t trust scientists, and because scientists haven’t consulted autistic people and their families and teachers and therapists about how to test. I’ve watched, every September when I was in graduate school, a queue of students enter the medical school office through one door and emerge through the other wielding a white coat, a stethoscope, and an attitude.

The third and perhaps least intractable front has been the fight for knowledge: For half my life I have been fighting the battle to understand the biomedical causes of autism in ways that lead to evidence-based, targeted treatments, and may in future lead to prevention or even cure. It’s been a long time coming, but with subtyping in terms of behaviour, neurophysiology and genetics, and informed by syndromic associations, the field at long last is zeroing in to be able to provide something more than the perennial ABA and PECS.

Never did I anticipate, though, that I would end up fighting a fourth battle, for respect for persons, against so-called ‘self-advocates’ and their fellow travellers, about the very definition and status of autism as the disease condition that it is. After the 1970s’ ignorant “Oh my child is very artistic too”, by the late twentieth century, thanks in no small part to the publicity efforts of parent-driven organisations such as Cure Autism Now (on whose Scientific Review Council I’m proud to have served) and the National Alliance for Autism Research (which, by funding my doctoral research, prevented me from dropping out of graduate school) people finally knew autism: People knew- or at least knew about- people who couldn’t speak, or who otherwise couldn’t connect thoughts and intentions to behaviours and actions flexibly and in the moment. People also knew a lot of their family members who, like me, were socially and motorically maladroit and fascinated with sensory, sensorimotor and cognitive patterns and relationships. Some of this latter group began receiving the label ‘Asperger syndrome’; more of us simply recognised in ourselves the broader phenotype described by Joe Piven and others. We all had some autistic traits. But none of us went around labelling ourselves ‘autistic’, any more than, say, a talented artist with schizoid traits would label herself ‘schizophrenic’. To do so, to appropriate that label, would have been patently absurd because our petty deficits were of a nature and degree that could be worked around. Yes, we didn’t get picked when the class was choosing kickball teams, we didn’t get party invitations, we didn’t get girlfriends and boyfriends, and time after time in the working world our social deficits and executive and affective dyscontrol lost us the very same jobs that our technical skills and intensity of focus had gained us. Life was lonely and often Sisypheanly hard- but you know what? Life is hard for a lot of people, indeed for everyone to some degree or other, because that’s life. And you don’t need to appropriate a label because life is hard. Instead you just need to get on with it, changing those aspects of the world that you can change but living with those that won’t budge.

During the past decade and a half or so, though, the logic of many newly and lately diagnosed Asperger or broader-phenotype individuals seems to have gone thus:
1. I am autistic. (false)
2. My condition is not a disease. (true)
3. Therefore autism is not a disease. (false)

This logic has been lately abetted by the DSM-5’s elimination of Asperger syndrome as a diagnostic term distinct from autism- as though when we see red we ought to think ‘violet’ because after all, light is a continuous spectrum! And it doesn’t help matters that this rhetoric is being driven by a population who tend to view distinctions in black and white rather than shades of colour. So we are back to a situation where people in general don’t know autism- except worse, because they *think* that they do know it. They have listened to those mildly affected and often very talented individuals who have appropriated the label. They have listened to the artists and authors and engineers who have clothed themselves in autism chic. These people are listened to because they can speak. I remember the moment when I first saw this public misperception taking hold. I was a postdoctoral scientist at Cambridge giving a public engagement talk. To augment the science with a personal connection I spoke a bit about my brother. I mentioned that he’d never spoken. A woman in the audience looked puzzled. “What,” she spluttered, “you mean, he has nothing to say?” Seriously. She actually didn’t get it. That’s the moment when I knew where we were headed, and that was sixteen years ago. And this change of climate has reached such a fever pitch that now, in last month’s Autistica Discover conference at the University of Reading, mainstream scientists apparently felt compelled to adopt this celebratory rhetoric of autism. That conference culminated in a panel none of whose members were authors and bloggers with autism such as Jonathan Mitchell who advocate treating autism as the problem that it is.

I want to share two letters of mine. One is ten years old, a reply to _Newsweek’s_ story about Ari Ne’eman and the ‘self-advocacy’ movement which was not selected for publication. The other is a few weeks old, a plea to a prominent scientist (whose name I’ve removed because his reply was a thoughtful one and I don’t want him tarred and feathered by the Internet) who spoke at the Autistica Discover meeting.

LETTER #1

Date: Sun, 24 May 2009 16:25:22 -0400 (EDT)
From: Matthew Belmonte
To: Letters@newsweek.com
Subject: letter for publication
Cc: Claudia Kalb

Editor:

Claudia Kalb’s 25 May article “Erasing Autism” describes Ari Ne’eman as a “master networker,” “sociable,” with a “well-timed sense of humor.” These characteristics are exactly why Mr Ne’eman is no more qualified than you or I to speak for people with autism.

There are many of us who as children had trouble with loud sounds, were fascinated by sensory patterns, lined up our toys in order of size or colour, had a nervous habit of hand-flapping, couldn’t immediately recognise new faces, felt anxious looking into others’ eyes, spoke too softly or too loudly, shied away from flexible social interaction, and spent most of our time gazing at railway cars, poring over science books, or programming computers. I know: I was one of them. I’m convinced that the same genetic susceptibility that made me a scientist is what made my brother and my niece autistic. BUT THIS MILD SIMILARITY DOESN’T MEAN THAT I HAVE AN AUTISM SPECTRUM CONDITION – and mis-applying that label, as so many detail-focused and mildly socially awkard “geeks” now seem wont to do, devalues the diagnosis for those people who really _are_ severely impaired.

Here’s the difference: My brother cannot speak, and is lucky to get out a couple of hundred words in an hour of painstaking pointing at a keyboard. (Many of those words are devoted to how frustrated he feels and how he’d like to have a cure.) My niece has speech, but can’t use it for flexible social communication. Both of them have such trouble controlling their own behaviours and bodies that, absent a miracle, they’ll never be able to live independently.

We families want that miracle, and we will not allow Mr Ne’eman to take it away from us by blurring the important distinction between severe autism, which is a disease to be cured, and milder forms of autism spectrum condition, which need not be treated as disease.

Mr Ne’eman makes an important point about the need for societal acceptance and accommodation of Asperger syndrome and autism. (Two huge unmet needs are augmentative technologies for communication and supported or sheltered places of employment.) Fundamentally, though, one has to live in the world, and like it or not, the world is defined by the majority. Being unable to speak, or to use speech communicatively, or to control one’s behaviour places a person at severe disadvantage – and that is the real tragedy.

Much of the rancour surrounding the prospect of a cure for autism stems from confusion over what we mean by “cure.” To me as an autism researcher, a cure is a treatment that augments and does not take away. A cure is something that confers on people with autism the social and communicative capacities that allow their unique insights to be shared with the rest of the world. It is not something that deletes those insights.

LETTER #2

From: Matthew Belmonte
Subject: Re: Autistica Discover Conference
Date: Mon, 1 Jul 2019 16:46:55 +0100

Dear Professor *****

At this past Thursday’s Autistica Discover Conference in Reading I was dismayed to hear you- of all people!- question whether autism were something that ought to be prevented. That moment has stuck in my mind during these past days. I didn’t stand up at the end of your talk to take issue with your position, because I was so literally dumbfounded, that someone who’s devoted so much time and scholarship to work that has demonstrated potential to ameliorate- and indeed perhaps in borderline cases to prevent- autism.

I did later scribble out what I wanted to say, and during the question time at the end of the conference’s closing panel I raised my hand to say it, but alas was not called on. Here it is:

I am brother and uncle to two people with autism.

I’m also a neuroscientist studying autism, and have served on the Scientific Review Council of Cure Autism Now.

My brother and I always have thought in similar ways and been fascinated by the same sorts of stimuli, and I always have held the thought that I could have been he, or he I.

My brother can’t speak. On a good DAY he can laboriously and haltingly type a few tens of words. In a bad YEAR, he was beaten daily because when he would run away from the ‘training centre’ where this was happening, nobody stopped to understand what he was trying to say.

The reason I want to cure autism is that I want him and people like him to be able to share their unique insights with the rest of the world. I don’t at all want to delete those insights. I’ve made this point in my public speech for the past two decades.

It’s very hard to fight for scientific and social understanding of autism whilst simultaneously fighting all the people who equate prevention and cure with eugenicism and genocide. I wish that you wouldn’t fuel that rhetoric and that false narrative.

Very sincerely,
Matthew Belmonte

You can read this post here: https://www.facebook.com/Matthew.K.Belmonte/posts/1245483425630265