A Cure for Autism?

By Kami-Leigh Agard

Folks, do you think there should be a movement to find a cure for autism? Globally, billions of dollars are invested in finding a cure for diseases like cancer and Alzheimer’s. Should we also hope for a “cure” for autism? I posed this question to my daughter’s dad, who I oftentimes think is the biblical King Solomon and Job wrapped up in one. His response—“Is autism a disease?” Ha! Great question! No, autism is not a disease. It’s a developmental disability that influences how individuals on the spectrum experience and interact with the world. And after reading about Spectrum 10K, a large-scale genetics U.K. study launched in 2021, in which 10,000 people with autism were invited to join to gather their DNA, I questioned the ethics of research looking to prevent or even euthanize autism. The study’s principal investigator, Simon Baron-Cohen himself admitted: “There’s no way we can ever say that a future political leader or a scientist won’t use the research for eugenics.”

Spectrum 10K was launched in 2021, under the aegis of the U.K.’s University of Cambridge Autism Research Centre. The study (an outgrowth of the defunct Human Genome Project), aimed to recruit 10,000 adults and minors (with parental consent) to contribute their DNA samples via swabs of saliva, as well as information on their overall mental and physical health. The project, which was anticipated to run for a decade, was controversial from the outset as it led to the formation of the autistic community-led Boycott Spectrum 10K group, known for hashtag #StopSpectrum10K, as well as Change.org petition against the project. As a result of the continuous backlash, the study’s team slammed on the brakes and ultimately canceled the study this past January. The center now states an intention to research: “ways to promote good health and prevent and treat ill health in autistic people, no longer researching genetic causation of autism.”

The relationship between eugenics, and autism and other disabilities, is marked by a troubling history.

The term, Asperger’s syndrome (which is classified on the autism spectrum) has roots in Nazi-annexed Austria. Hans Asperger, the Austrian pediatrician for whom the diagnosis was later named, worked within the Nazi system, categorizing autistic children as either “capable of productivity,” or having higher support needs. Those deemed, “unproductive,” were often subjected to euthanasia under the Nazi regime.

The early 20th century saw the eugenics movement gain traction here in the U.S. with for example, Margaret Sanger, founder of the Birth Control League (now known as Planned Parenthood). Sanger’s eugenics creed is clearly stated in her 1932 speech, “My Way To Peace.” (1932). As quoted, “The first step would be to control the intake and output on morons, mental defectives, epileptics. The second step would be to take an inventory of the second group, such as illiterates, paupers, unemployables, criminals, prostitutes, dope-fiends; classify them in special departments under government medical protection and segregate them on farms and open spaces.” In the improbable feminist icon, Sanger, the humanitarian dream of a world without poverty and illness deteriorated into a coercive world where the poor, disabled, the addicted and even people of color would simply disappear.

Eugenics is the belief that we can improve the human race by eliminating undesirable genetic traits. As stated in an opinion piece in the Christian Post by columnist, Chuck Colson: “Eugenics is so dangerous and pernicious because it represents a radical disrespect for every human life, not just the life of the unborn. Adolf Hitler, an open admirer of the American and German eugenics movements, began eliminating the mentally and physically handicapped years before he started killing Jews.”

I thought about when I was in my second trimester with Soa. The doctor offered an option to have an amniocentesis, a prenatal test in which a hollow needle is inserted into the uterus taking a sample of amniotic fluid to assess for certain birth defects and genetic disorders. Soa’s dad and I agreed—no. What if there was a similar test to detect autism? I would still refuse.

My 16-year-old daughter is yes—quite a handful. However, despite the daily challenges, finding a cure for autism is not on my wish list. Autistic individuals bring so much joy and a curiosity about life. I just want us as a community to build autism awareness, acceptance, and opportunities for us to together enjoy this fascinating show we call life!

Please share your thoughts by emailing: kami@rockawaybeachautismfamilies.org