Shannon Des Roches Rosa

Photo © Jeffrey Beall | Flickr / Creative Commons

[image: Photo of metal letters spelling “Science” affixed to a brick wall.]

At a recent workshop on How to Find Autism Information That Will Help You, I noted that a key factor for evaluating an autism resource is: Who does the approach primarily benefit? Autistic people themselves, or people affiliated with autistic people, such as families or teachers? It’s important to identify this aim, because approaches that support autistic people in living lives of maximized happiness and potential can be very different from the parent-centered approaches—which too often portray autistic people as problems to be managed and controlled.

We at Thinking Person’s Guide to Autism support the helping approach, and routinely criticize the problem/control approach—an ongoing effort as the latter remains pervasive both in popular culture, and in research.

The problem/control approach is also a theme in this week’s Autism Science Foundation (ASF) Day of Learning. While several of the planned ASF talks are on standard and generally useful topics by prominent researchers, three of the talks are on topics that are not just about seeing autistic people as burdens, but also based on questionable research.

Dr. Craig Newschaffer of Drexel University will be speaking on Understanding Modifiable Autism Risk Factors, which makes me cock an eyebrow. As Dr. Emily Willingham has noted on several occasions and in several different ways, most discussions of autism risk factors are … not to be taken seriously. We know what causes autism: it is largely genetic, and often inherited.

And while Dr. Newschaffer’s focus seems more measured than the usual headline-grabbing autism-cause-of-the-week, emphasizing “modifiable” risk factors implies that parents can avoid having an autistic child if they make the right choices — which is yet another round of harmful and unnecessary mother-blaming, as well as a smack in the face to autistic people of all abilities who fight for acceptance and respect. As autistic writer Amy Sequenzia has noted,

“Why, then, the “urgent need” to find a genetic marker? How would this help Autistic people living now? Do we have so little value?” 

Another planned talk is Understanding the Female Protective Effect by Dr. Donna Werling of UCSF. The entire concept of being female protecting against the likelihood of a person being autistic has been fiercely questioned in both the research and public media spheres, as well as by autistic people themselves. The main argument against the “protective effect” is that autism is different for girls, and that lower-support girls especially become skilled at masking and passing, and so remain undiagnosed and unsupported — often resulting in debilitating anxiety and depression.

The final ASF talk we are less than pleased about is Housing Options for Adults with Autism, by Amy Lutz of the EASI Foundation. While Lutz is quite skilled at making a case for parent-led housing choices rather than successful community living and supported decision making, she tends to misrepresent, co-opt, and spin the positions of the autistic and disabled people who are fighting for their own housing rights, and are often rooted in decades of policy precedents and victories. As Sam Crane of The Autistic Self-Advocacy Network says, when asked about criticism like Lutz‘s,

“We’re not opposed to people with disabilities choosing to live with other people who share common values or lifestyle preferences. What we are worried about is when people set up segregated, campus-style housing for people with disabilities under the guise of creating a ‘community.'”

And I’m personally not comfortable with Lutz as a speaker at any autism event, honestly, given her tendency to present anecdotal, unproven, and potentially harmful approaches like electro-convulsive therapy (ECT) for autistic “behaviors” as evidence-based. Dr. Steven Kapp, a Research Fellow in Autism and Neurodiversity at the University of Exeter in the UK, cautions that,

“ECT intentionally causes seizures in the name of “treatment” but this electric shock to the brain might trigger or exacerbate further seizures. Many autistic people, especially with less verbal language and who may need to communicate through their bodies, have a risk of late-onset epilepsy. Especially since some people prone to seizures have not (yet) experienced them even as they may have epilepsy-like activity in the brain, ECT’s shock may trigger seizures, a serious and understudied issue. Seizures are a top killer of autistic people, and ECT may parallel the discredited use of chelation as “treatment” for autism that intentionally injects heavy metals in the body, resulting in poisoning that sometimes proves fatal. Whereas chelation “therapy” stems from a false ideology of binding to the metals supposedly already in the individual to remove them, even ECT’s proponents do not know how it “works.” Yet it is forced upon autistic people while people with other conditions give informed consent as standard practice.”

Lutz argues that ECT was the only solution for her son’s intractable aggression and self-injurious behaviors, but nowhere in her writings, or in the biographies of other EASI Foundation board members, are the possible reasons for the autistic children’s distress considered. Instead all the parents cite the failure of medications, psychiatric hospitalizations, and even dangerous pseudoscience approaches like chelation, antivirals, and hyperbaric oxygen chambers. While I have empathy for fellow parents going through tough times, it is disheartening to see autistic children in such desperate need of support instead being “controlled” through restraints, sedation, and shock treatments. As I’ve written before,

“I realize that setting a high-support autistic person up with the best possible conditions, understanding, and acceptance doesn’t fix everything, because of personal experience — but families really do need more information about why autistic people self-injure, and about the state of autism and ECT research, before absorbing and acting on autism and ECT articles.”

A final quibble with the Day of Learning is its lack of autistic speakers. True, there aren’t as many openly autistic researchers in the autism field as one would like. But given Lutz’s presence on the panel, being a scientist or researcher was obviously not required. At this point in time, excluding autistic speakers from autism science events is absurd. As University of Edinburgh researcher Sue Fletcher-Watson recently wrote,

“I remain concerned about the wider phenomenon of a research community trying to do good, useful, important work, while also avoiding getting ‘caught up’ in an autistic led agenda. We must not forget that people who are happy with the status quo don’t need to shout. We are the status quo – we’ve got their back already. By definition, someone who feels the need to speak up probably has a problem with the way things are being done. This doesn’t make them a trouble-maker. It makes them an advocate.”

I hope this article is taken in the spirit in which it is intended — as a critique, rather than an invitation to a duel. My autistic son, and autistic friends, deserve for the scientific community to see and include them as human beings, and not, *cough*, as puzzles to be solved.