Autism is in the news frequently these days, with several of our nation’s leaders making it a flagship of their administration to fix the “problem” of autism.
I put problem in quotes because not everyone agrees that autism is a problem, or that it needs to be fixed. There are many people with autism and family members of autistic children who have very strong opinions about how we approach autism in our society. This column isn’t for you folks.
I’m writing today for myriad other readers out there who are confused about the debate and why the debate even exists. For you, I would like to try to summarize the varying perspectives in this national discussion with the difficult goal of trying to fairly represent these perspectives without my own bias.
Much of the recent news has centered on attempts to find the cause and a cure for autism, including revisiting the potential of a link between autism and vaccines and exploring other potential factors, such as use of acetaminophen during pregnancy.
For some families, the continued exploration for a cause and cure has been crucial to feeling a sense of control over something that makes them feel entirely out of control over their child’s well-being and future. They look at the numbers of autism prevalence and see that they don’t add up; they cannot be explained by better identification and diagnosis alone. They see that science has dismissed the link between autism and vaccines and recognize that their experience says otherwise.
These families are asking the questions that have prompted RFK Jr. and others to challenge the answers they’ve been given and explore the solutions that match their observations.
You may wonder, what’s the harm in asking questions?
Many autistic adults find significant harm in opening questions that have long been resolved. In their view, the science is in on autism, and it shows that there are a variety of genetic and environmental factors that contribute to autism. This answer may be unsatisfactory to those who would prefer a single cause that can be defeated. But unsatisfactory isn’t untrue.
One problem with the focus on finding a cause/cure is that it takes precious resources and attention away from developing and funding appropriate supports and environmental adaptations that will make autistic people more comfortable, successful, and included in their lives and communities.
Another issue that people with autism have with the focus on a cure is that they do not see themselves as damaged or something to be cured. They see the attempt to cure something that is an essential component of their being as an attempt to erase them, an extension of the eugenics movement that strives to eradicate “undesirable” traits from humanity.
The real “problem” with autism right now is that the voices of some perspectives are being elevated while others are silenced, regardless of the validity of either message. As the debate continues, let’s not forget the real lives that are impacted in our attempt to “just” ask questions.
Tara Kiene is president and CEO of Community Connections.
