Big Talk, Little Actual Change for Autism Speaks’ Research Agenda

Last week, Autism Speaks released their new “Strategic Plan for Science 2018-2020.” The new strategic plan follows a wording change to their mission statement and a 2017 stakeholder survey. The survey was primarily about Autism Speaks’ research funding. The kinds of research they fund impacts autistic people, since according to an IACC document, they are the third largest funder of autism research. According to many experts, it doesn’t appear that Autism Speaks significantly changed their strategic science planning. The survey results, published in October 2017, have some important highlights. One question asked about research areas to avoid; of the responses, “most indicated opposition to research aimed at curing or preventing autism.” A specific response included “Researching a cure or genetic markers of autism. Preventing or curing autism is a form of eugenics, which is an abhorrent idea.” A further trend of the survey included: “Opposition to cure/prevention/ABA; more … Continue Reading ››

New Compliance Tracking Drugs Violate Human Rights

Neurodivergent people are one of the few groups who can be deprived of our most basic forms of autonomy and privacy just because of who we are.  This includes confinement in institutional settings such as group homes, nursing homes and residential schools, as well as guardianship and court orders for the misleadingly-named “assisted outpatient treatment.”  Most recently, the United States Food and Drug Administration approved Abilify MyCite, an antipsychotic medication that tracks whether a person has taken it or not. Abilify MyCite further threatens the rights of people with psychosocial disabilities by putting us at risk of surveillance and all the consequences likely to follow from that. As is the case with most practices and technologies that restrict disabled people’s rights, nondisabled people are already defending the new medication as being both for neurodivergent people’s own good and for the convenience of their families and caregivers.  But like in … Continue Reading ››

Extreme Diets Damage Autistic People

Note: This article contains discussion of disordered eating. For many parents of a newly-diagnosed autistic child, a quick internet search into autism tells them that changing their child’s diet is a smart first step towards “improving” autistic behaviors or other co-occuring conditions. Despite the popularity of “autism diets”, research shows that there is insufficient proof that they do anything positive at all. Nevertheless, strictly regimenting the diet of autistic children continues to be common. I was one of those autistic children, and my parents thought they were doing what was best for me. Though parents may believe this is for the benefit of their child, my own experience on an autism diet led to permanent harm. Growing up, I was not allowed to eat a laundry list of seemingly random foods: dairy, sesame seeds, mangoes, peanuts, whole wheat. In order to avoid explaining my autism diagnosis to me, my … Continue Reading ››

Denzel Washington Does Autism Right in Roman J. Israel, Esq.

Denzel Washington sometimes feels like the personification of the old maxim about how African-Americans must be “twice as good to get half as much.” His last big role was his masterful, self-directed performance in 2016’s adaptation of August Wilson’s “Fences,” but the best actor of his generation remains the best whether he’s playing drug kingpin Frank Lucas in “American Gangster” or recreating the Yul Brynner role in last year’s “Magnificent Seven” remake. In an industry where legends like De Niro and Pacino increasingly sleepwalk to paychecks, he simply does not slum it. All this is to say that when I heard Washington would be playing a lawyer on the autism spectrum in “Roman J. Israel, Esq.,” I wasn’t as nervous as this kind of casting normally makes me. Playing a disabled character is notorious as a cynical fast-track to awards attention, but Washington is the last actor on earth who would … Continue Reading ››

Autism Registries are Dangerous

Cranston, Rhode Island, has just established a voluntary registry to record information on autistic people between the ages of 6 and 21. The registry is managed by the Cranston Police Department and is intended to help autistic young people who interact with the police. Autism registries aren’t limited to Cranston. Several US states and Canadian provinces have databases that require or encourage professionals to enter information about autistic patients. Some registries, like Montana’s and New Jersey’s, are mandatory. Autism registries present a real threat to autistic people’s civil rights, privacy and autonomy. In 2015, I conducted research with the Human Services Research Institute and the University of Massachusetts Medical School. Our goal was to gauge attitudes towards the creation of a statewide autism database in Massachusetts The state government was considering creating a database similar to databases in other states. We recruited a  “citizen’s jury.”A citizen’s jury is a type of … Continue Reading ››