As the parent of a daughter on the autism spectrum (now 26) and author of a memoir about raising her and her ADHD twin brother, I’m SUPER aware of the crisis in ALL support services for adults with disabilities. That’s why I found it VERY frustrating to read The Crisis in Mental Health Services for Young Adults on the Autism Spectrum by Lee Wilkinson, Ph.D. While the author of this blog (bestpractice.autism.com) boasts impressive credentials and has been honored for having a “top 50 autism blog,” his October 1st post—while no doubt scrupulously accurate—is hardly breaking news.
You don’t need a Ph.D. to know that young adults transitioning out of structured educational settings are “at increased risk of developing depression and anxiety.” Just ask any autism parent. Wilkinson seems puzzled by the idea that despite obvious mental health risks, “very few studies have examined treatment approaches and intervention for adolescents and adults with autism spectrum conditions.” Why not? There are many answers to this question, depending on who you ask and what books you read.
From my observation, Autism Speaks seems most heavily invested in finding ways to prevent and “cure” autism. Their priority is research and studies that may help unborn children in the future, along with offering effective treatment options for young children. Although I’m grateful for whatever groundbreaking research Autism Speaks may be spearheading, I can’t help wishing more attention and energy went toward the current generation, as well as their aging parents. What about millennials with autism? They are a huge and growing minority.
NeuroTribes by Steve Silberman traces the complex history of autism and argues that the autistic spectrum is as old as mankind. While the research quoted in NeuroTribes did not provide practical day-to-day help for people on the spectrum, the book changed the public’s perception of autism with a profound analysis of human history, in addition to statistics and studies. Furthermore, the book lifted the self-esteem for readers on the spectrum and sent ripples of hope and pride to their families and friends. NeuroTribes concludes by emphasizing the need to care for and appreciate individuals living with autism, instead of seeking to prevent them from ever being born. (!)
Our society needs to prioritize the needs of people living with autism over autism prevention. NeuroTribes points out that the autistic perspective has offered special gifts to mankind for centuries in the form of scientific inventions and discoveries. Today’s researchers should not be focused on preventing the ancient autistic neurotype. We should direct our efforts toward recognizing and integrating this human mind style. The autism community needs to focus on supporting adults on the spectrum in leading meaningful lives NOW. Of course, researchers should also continue to explore risk factors for autism while collecting educational and cultural data that helps us see beyond stereotypes and stigmas.
In my opinion, too much time and money has been spent on autism debate and theory. Let’s invest more financial and intellectual effort into life skills support, job training, work place accommodations, and affordable housing for people struggling with autism in the here and now. That way we will also be providing relief to the families and friends who are caring for a loved one on the spectrum. Actions still speak louder than words.