Targeting the ‘symptoms’ of autism sounds a lot like ‘curing autism’—but autism is not a disease, it does not need curing.
This past June, the European Union and dozens of pharmaceutical companies—including AstraZeneca (which sells Movantik constipation tablets), Glaxosmithkline, and Pfizer—announced they’ve been awarded a $131 million research grant aimed at studying neurodevelopmental conditions. The aim of the grant is to “increase our understanding of autism and help to develop new therapies to improve health outcomes and quality of life for autistic people.”
But the research program has been heavily criticized by many of those in the autistic community, who describe the Autism Innovative Medical Studies-2-Trials as not only offensive—many neurodivergent people feel their differences should be celebrated, not “fixed”—but as potentially serving as an argument to stop autistic people being born altogether.
Panda Mery is a university researcher in London and a former journalist, lecturer, and software engineer. He’s also autistic, and when he found out that a huge U.S.-based charity called Autism Speaks was involved in the AIMS-2 project, he grew highly suspicious of what “solutions” this research was seeking out.
“[Autism Speaks] are basically a hate speech organization,” he told me in an interview. “They treat autism like a cancer. You want to get rid of the cancer. You want to get rid of the autism. But autism is part of your identity. It’s like, how can you get rid of the Britishness of someone? How can you get rid of the Jewishness of someone? How can you get rid of the autism of someone?”
Autism Speaks is also held in low esteem by the two other autistic people I interviewed. Dr. Damian Milton, a social scientist at England’s University of Kent, said the organization has a “very dubious reputation with the autistic community.” Cos Michael, an autism consultant, added, “They used to have a prize every year called the ‘curing autism’ hero. They hate autism.”
When these comments were put to Autism Speaks senior director of media strategy Aurelia Grayson, she replied:
“These comments completely mischaracterize Autism Speaks, which is dedicated to increasing understanding and acceptance of people with autism. Our national board and staff include adults with autism and parents of children on the spectrum, guiding every aspect of our mission–from research to family services and advocacy.
Research funded by Autism Speaks shows that autism affects each person differently. As you know, some people can live independently; others need assistance with certain aspects of their lives, such as education or employment; and others have significant medical and behavioral challenges requiring 24/7 care. Through research, we are gaining a better understanding of the many forms of autism, which will make it possible to tailor treatments, resources and supports to individual needs.”
With alarm bells ringing, Mery requested a copy of the AIMS-2 grant agreement under EU transparency rules. On receiving the 664-page document, the alarm bells’ decibels became deafening. One section in particular troubled him:
“Currently, there are no effective medical treatments for the core symptoms of Autism Spectrum Disorder. Our overall goal is to address these shortcomings by adopting a precision-medicine approach to better target treatments to patients through the use of validated stratification biomarkers and by testing novel or repurposed drugs.”
For Mery, targeting the symptoms of autism sounds a lot like “curing autism”—but autism is not a disease, it does not need curing. Cos Michael also objects to this language of “core symptoms”:
“What are they? Are they good things? Bad things? Who decides? Because they keep changing. Through history, the ‘core symptoms’ of autism have changed. It’s about what other [non-autistic] people call them. And ‘targeting them’? Why? Because we want to take them out? It’s so full of…well, hate, frankly.”
While nobody I spoke to wanted to overstate the comparison, there are similarities with how homophobia views homosexuality—as something to be cured. The American Psychiatric Association viewed homosexuality as a mental disorder until 1987 and still views autism as such. Panda hopes one day that will change.
AIMS-2 is poised as a threat to the very survival of the autistic community. The trials aim to identify “biomarkers”—genes which are linked to autism. There’s nothing inherently wrong with research like this, just like there was nothing wrong with Ernest Rutherford’s research into splitting the atom. Gaining knowledge is rarely a bad thing, but how that knowledge is subsequently used is another story altogether.Targeting the symptoms of autism sounds a lot like curing autism—but autism is not a disease, it does not need curing. Click To Tweet
Rutherford’s research, of course, was ultimately used to create the nuclear bomb; autism biomarkers could be used to inform pregnant mothers that their babies are likely to be autistic. Given the social stigma of autism, the misconceptions around it, and the reality that raising autistic children can be difficult, this could potentially lead to mass abortion and a declining autistic population.
This might sound like dystopian fiction but, as both Michael and Mery pointed out, in Iceland this is already a reality for people with Down’s Syndrome. Icelandic doctors are required by law to tell pregnant women that there is a screening test available which can indicate (among other things) the presence of Down’s Syndrome in their fetus. According to CBS, nearly all the women whose tests indicate Down’s Syndrome, terminate the pregnancy.
“If you get the biomarker research that they’re aiming for, you’ll be able to eliminate a group of people based on the fact that you just don’t want that group of people around,” warned Michael. “It’s designer baby time. It’s eugenics.”
Dr. Milton agrees that the search for autistic biomarkers is “a bit eugenicist,” but he thinks the search will fail. “It’s a genuine concern, but it’s like the U2 song, they’re not going to find what they’re looking for,” he joked. “Autism is an umbrella term describing a way of being, a way of acting in the world which is part of the diversity of people. It’s a category which is social in nature. Trying to find a biomarker for autism is not going to happen as such. Even sub-types of autism is a bit of a lost cause.”
His concern is that millions of euros will be spent on developing drugs that don’t work and may have side effects, and that parents will be told inaccurately that their children have an increased likelihood of autism. All this will improve pharmaceutical company profits, but increase the stigma of autism.
With all this money wasted, what the autistic community itself actually wants to be researched remains largely ignored by AIMS-2. When autistic people were asked what they wanted researching, they answered with things like, “how to reduce anxiety” and “how to improve mental health, adult social care, and adult autism diagnoses.” But, as the answer to most of these problems are unlikely to be “new drugs,” pharmaceutical companies are not interested.
On one point however, the interests of big pharma and autistic people are, at least partly, aligned. Epilepsy is common in autistic people, and Mery, Michael, and Damian all said they would welcome research into drugs to treat it. Research into epilepsy is mentioned in the AIMS-2 grant agreement, but is not as core to the program as many would like it to be.With all this money wasted, what the autistic community itself actually wants to be researched remains largely ignored by AIMS-2. Click To Tweet
And while the power may seem to be with the EU and the multi-billion dollar corporations, ordinary autistic people do have some leverage in fact. The tests will need what Michael calls “lab rats,” autistic volunteers. “It doesn’t matter how much money they can throw at it,” she said, “If they can’t get autistic people involved, then how can they carry out their trials?”
(One of the companies involved is the world’s second biggest pharmaceutical company—Roche. When contacted for this article, the company denied it was researching a cure for autism and claimed that AIMS-2 was transparent and was consulting with autistic people. Their answers did not satisfy the autistic people I spoke to.)