Last night I started reading a lengthy, but well-researched article published in The Transmitter, the new publication by the publishers of Spectrum Magazine. The article is titled “Autism research at the crossroads” and it explores the power struggle between autism researchers and autistic self-advocates and how that impacts developments in autism research. I've always avoided the "political" aspects of autism, but it made me think about how we present ourselves.
At first glance, the tension is not hard to explain: After decades of exclusion from the decision-making that affected their very lives, some autistic people began fiercely fighting for a seat at the table. But the issue is more complex than just a power struggle, and it’s threatening progress across the field.
Profound Autism
One of the major disagreements in this conflict is the term "profound autism" defined as an “administrative term” for autistic people who need 24-hour access to an adult if concern arises, are unable to be left alone in a residence and cannot take care of “daily adaptive needs.” The term was coined by a Lancet Commission on the Future of Care and Clinical Research in Autism report in December 2021, and immediately was met with pushback from autistic self-advocates.
Within two months of the Lancet report’s publication, the Global Autistic Task Force on Autism Research — some two dozen autistic groups from around the world — published an open letter to the commission, criticizing (among other things) the proposed use of the term profound autism, calling it “highly problematic.” Their argument was that the label would “potentially exclude” a swath of autistic people from “the concern, dignity and respect offered to others.”
On the opposite side of the argument, organizations such as the Profound Autism Alliance advocate strongly for the need for the term, as "People with profound autism consistently experience unique, devastating, and often unseen challenges that require solutions, not only for them but for their caregivers."
They also argue that the rise of autism advocacy has led to a significant reduction in scientific studies of profound autism as well as the marginalization of those who are "profoundly autistic" in favour of the neurodiversity movement's “high-functioning” membership.
Partial Representation
Amy Lutz, founding board member of the National Council on Severe Autism and mother of profoundly autistic Jonah, calls this partial representation, a term used to describe a group — political, social, whatever — that purports to speak for the entirety of its members but fails to do so. Lutz co-wrote a 2020 paper on this topic with Matthew McCoy, who teaches medical ethics at the University of Pennsylvania titled Ethical Advocacy Across the Autism Spectrum: Beyond Partial Representation. In the paper, partial representation is defined as an actor claiming “to represent a particular group of people, but appropriately engages with only a subset in that group.”
McCoy said that to avoid partial representation in autism, a group would need to interact with those who are able to articulate their own interests, but also those with the “most profound autism” and “patients and caregivers,” as well as doctors and others. If a group relies solely on “engagement with autistic self-advocates to understand the interests of the broader autistic population,” then it “carries a risk of bias.”
The paper also suggests that, just as the maligned Autism Speaks failed to engage appropriately with autistic self-advocates and organisations such as ASAN (the Autistic Self Advocacy Network) have failed to engage appropriately with parents raising concerns on behalf of their children.
The Role of Self-advocacy
According to Zoe Gross, ASAN's director of advocacy, ASAN has made great strides, often collaboratively with the scientific community, for change in the world of autism. The group has official positions on applied behavior analysis (ABA), genetic research and discrimination in health care, among many other areas, but ASAN understands that a key to advocacy is compromise, and that toxic behavior makes it easy for policymakers to ignore you.
Gross says that it is not ASAN that is comparing autism researchers to Nazis. That comes from legions of individual Twitter handles, Facebook accounts and online warriors whose power lies in their outraged tone and sheer volume. Many of these people are young, autistic and not particularly interested in hearing the nuances around scientific terminology. They have gathered online to fight against a world they feel has callously swept them aside for decades, and that sometimes includes non-autistic trolls and the parents of autistic children.
Research Allocation
Shannon Des Roches Rosa, senior editor of the Thinking Person’s Guide to Autism, says that autistic people and advocates are also keenly aware of where true power lies, and it’s not on Twitter. It is the biomedical community and its funders who hold the key to the future of autism research, leaving the “disenfranchised” autistic community with just its voice. It is unreasonable to expect that the voice will always be diplomatic, especially given that autism can be considered a social disability. “And sometimes,” she said, that voice will “come out as bullying. Because what other power do they have? I mean, they’re furious. But that doesn’t mean they’re wrong.”
In her 2022 research paper, “Autism research is in crisis: A mixed method study of researcher’s constructions of autistic people and autism research", Monique Botha, who is autistic and a research fellow at the University of Surrey in the U.K, argues that autism researchers have power in determining what we know about autism and how we know it. According to her, there is a gap between which autism research topics get funded and topics which are priorities for autistic people and their families. For example, most funding goes toward “basic science” topics (brain, behavior, genetics, causes) or focus on children, even though autistic children grow up to become autistic adults.
The paper found that funded autism research does not tend to focus on the priorities of the autistic or wider autism community, which focuses on topics such as post-diagnostic support, mental and physical health, improving public understanding, and improving access to services. Further, a review of autism research priorities studies found that only 9% of participants were autistic. Instead, family members accounted for 61%, while professionals accounted for 24% - meaning a large amount of priority setting rests largely in other (typically non-autistic) people’s hands.
Confrontation vs. Collaboration
Zoe Gross of ASAN says that in social and political movements, activists have a range of tools at their disposal. Collaboration is one, and groups like ASAN have used this to great effect. Confrontation is another tool. Social media has been a boon to communities of all kinds, including to the neurodiversity movement, but it has also made confrontation an easy tool to deploy. For some advocates, it can be as quick and simple as logging on, “metaphorically throwing rocks” for the cause, and then logging off.
Right now, the autism field feels far from a broad consensus, and collaboration might seem in short supply, especially on social media. Even though self-advocates play a critical role in driving change, if the end result is more polarization, a halting of progress and a decrease in collaboration, we are not moving forward, according to Evdokia Anagnostou, researcher and board member of the International Society for Autism Research.
Division and Social Media
Last week my daughter and I had a long discussion about the reactions on social media to Donald Trump's win in the US election. Our conclusion was that social media makes it so easy (and profitable) to spread hate and division, all that we can do is to try and reduce the amount of hate and division in the world. And the best way to do this is to always make sure that we do our research and listen to both sides of an argument with compassion.
I know that I am also guilty. On the one hand I am furious every time there is another @&#$?&! autism conference without a single autistic speaker, while on the other hand I have an irrational dislike for the instant autism advocates who were diagnosed as adults.
So, let's remember that we are a community - a community of autistic adults, children and parents. As well as those researchers and clinicians trying to make a difference. And amongst us there are those who do not have a voice. The non-verbal, the profoundly autistic and those with multiple co-morbidities. Our responsibility is to them first.