The profound impairments of autism are also "fit to print,” and acknowledging them is a crucial matter for public policy, writes Lee Wachtel, MD.
Kennedy Krieger Institute’s Neurobehavioral Unit serves patients with autism and other developmental disabilities.
By Lee Elizabeth Wachtel, MD
Two mothers of autistic children whose stories were recently in The New York Times bring to the forefront an ideological battle that has been escalating for years in the world of autism. We could call it Disability versus Diversity. Disorder versus Gift. Change-worthy versus celebration-worthy. It is true that autism is recognized clinically as a spectrum. Yet the capacity for our society to consider different perspectives within that spectrum is incongruously limited.
The New York Times published the 2020 party line: we only learn and grow from autism, and a pox upon anyone who suggests that some aspects of autism are not laudable. I am not an autism parent, but I have led for the past 17 years an inpatient hospital service given over to autism and other developmental disorders. I would agree 110% that autistic children and their families are very special, and I readily confirm that their contributions to our world are spectacular. But I also bear witness to the brutal truth of the profound psychiatric, behavioral, cognitive and medical challenges that afflict some individuals with autism.
And yes, afflict is the correct word, because when an autistic child has permanently blinded himself from self-injury, broken his teacher’s arm or swallowed multiple toothbrushes and required emergency surgery, there is nothing perfect or magnificent about it, and it must be remedied. One of the mothers writing in The New York Times readily recognized that her autistic son’s seizures were problematic rather than perfect and sought treatment. If you don’t believe me that many autistic children need and deserve treatment and related care, ask the mother who wanted a professionally-painted scleral shell for Mother’s Day so her daughter wouldn’t appear so disfigured after losing an eye to self-injury. Or the mother who lay in an ICU bed and held her dying autistic son after a brutal beating in a totally inappropriate setting.
Children with autism will spend far more years as adults with autism, and the needs of some of those individuals will remain at very high levels of intensity across the lifespan. Those citizens, and their families, merit just as much attention and care as the autistic youngsters at the other end of the spectrum who typically have fewer cognitive, psychiatric and behavioral comorbidities, and may very well be capable of using their unique autistic mind as a “superpower” to solve Fermat’s Last Theorem or win a Nobel Prize. This is a crucial matter of public policy in our country, and we cannot afford to cater solely to one group’s agenda.
Sadly, American society has recently deteriorated into a cataclysmic “cancel” culture where anyone who dares to voice an alternate opinion – particularly one that is unpopular, points out fragilities or challenges the party line – is publicly shamed and ridiculed, and erased from the agenda. This is blatantly apparent in the world of autism and developmental disability, where if it isn’t a perfect or magnificent gift, we don’t want to hear about it, and certainly don’t want to address it or consider change, even when lives are at stake. While we haven’t yet exiled the autism dissenters to the gulag, the consequences of cancellation have banished the honest needs and plight of some to the figurative taiga, leaving the most vulnerable in precarious positions.
We honor the 30th anniversary of the Americans with Disabilities Act during an unprecedented struggle against both COVID-19 and social injustice in our country.
Let’s be brave, and not leave anyone out.
Lee Elizabeth Wachtel, MD is the Medical Director of the Neurobehavioral Unit at the Kennedy Krieger Institute and an Associate Professor of Psychiatry at the Johns Hopkins School of Medicine.
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