What does a diagnosis of autism really mean?  That depends on who you ask. Currently defined as a spectrum of disorders, the autism label covers people who are severely disabled—those who engage in violent or self-injurious behavior and are unable to communicate appropriately or care for themselves independently—as well much higher functioning individuals.  On the high end of the spectrum, there are people (some with Asperger’s Syndrome) who can speak for themselves, adapt to the neurotypical world, and manage their lives independently. In between these two extremes are a HUGE number of people who fall somewhere in the middle of the spectrum: they are capable of communicating and caring for themselves in creative and idiosyncratic ways, but may still need academic, vocational and / or life skills support.

As the mother of a daughter at the upper end of the middle, (sounds a little ridiculous, no?) I can’t help being drawn into the debate.  Published this month, In A Different Key: The Story of Autism, journalists John Donvan and Caren Zucker offer a comprehensive history and “science” of changing definitions and causes of autism including: “refrigerator moms” in the 1940s, the vaccine theory in the late 1990s,  and ending with the current “neurodiversity movement.”  After raising Sarah for 25 years, I greatly enjoyed the authors’ conversation with NPR’s Robert Siegel, host of All Things Considered at https://www.npr.org/sections/health-shots/2016/01/19/463601735/in-a-different-key-traces-history-and-politics-of-autism 

Fortunately, my daughter was born in 1990—long after Dr. Leo Kanner’s “refrigerator mother theory”— which claimed a lack of maternal warmth caused autism— had been rejected (although I sometimes wonder if being premature and living in an incubator for 16 days contributed to Sarah’s autism).  Of course, Sarah’s twin brother Max was in an incubator for the same time period, and he is NOT on the spectrum. Go to hell, Dr. Kanner! I also can’t help but dismiss the vaccine theory (although not nearly as emphatically) put forth by Dr. Andrew Wakefield in 1997, suggesting that the immunization schedule for infants—or perhaps thimerosal, a vaccine preservative—was responsible for the increasing number of children diagnosed with autism. Sorry, Dr. Wakefield, but my son Max had exactly the same injections as his twin sister, and he developed normally.
Fast forward to the present day, and you have Ari Ne’man, a prominent and articulate activist, arguing for the pressing need to validate the concept of neurodiversity at the end of The Story of Autism. Ne’man believes that people with autism should be accepted the way they are, instead of society trying to treat or “cure” them into conformity with cultural norms.   In contrast, Liz Bell is mother to a young man named Tyler, whose autism prevents him from independently dressing, shaving, feeding himself or even walking out the front door without running into traffic.  Bell very much disagrees with Ne’man and feels that autism has severely limited her son’s life (not to mention her own!)   Should Tyler be treated to help him become more independent, “his own person,” or would treatment suppress his “true” identity, as Ne’man argues?

If you believe, as I do, that the current definition of autism is much too broad, then treating people “on the spectrum” who suffer from the most severe symptoms (yes, suffer!) is a no-brainer. Ignoring painful symptoms is not compassionate or practical, even if doing so supports a more accepting attitude toward people with autism. While I agree with Ne’man that all people on the spectrum should be accepted and accommodated in our society, I think parents are the ones who must decide what’s best for their individual child with autism—ESPECIALLY if that child is unable to speak. Ne’man is an articulate and admirable spokesperson for high-functioning individuals on the spectrum. (Rah, rah!) However, Ne’man is NOT one of us parents, struggling to raise children who have meltdowns over their inability to express themselves, or who suffer acutely from sensory defensiveness.  I’m guessing that Ne’man didn’t tear his clothes in frustration at age 5, or rip out his hair because he was unable to comb through the knots at age 7 the way my daughter did. And what about Lenny, the young man in Autism in Love? (See last week’s Autism in Love – Pioneer Territory).  Lenny clearly stated that he’d rather be “normal than an autistic person with a million dollars.”

Until there is a better understanding of autism—which may take many years—no individual is capable of speaking for ALL people on the spectrum. Ne’man makes many valid points for himself and others like him. Human diversity can and should be respected.  But what about people on the autistic spectrum, who are chronically unhappy because of their limitations and struggles and yearn for independent lives?  If you ask Sarah, she’d be the first to tell you she appreciates all the therapy she received as a child; further, she still wants all the help she can get to find a job and live an independent life. I know that many of her like-minded friends would agree that independence is their goal. There’s a saying going around lately: “If you meet one person on the spectrum, you’ve met one person on the spectrum.” There is no one size fits all approach to autism. Instead there are many different individuals with various strengths and weaknesses, with a range of challenges and symptoms.  We must find new and better ways to listen to ALL people on the autistic spectrum —whether or not they can communicate in words.