Autism—A Developmental Disorder or Just A Neurological Difference?

By Kami-Leigh Agard

Is autism a difference, diagnosis, disorder, disease or disability? Sadly, these “D-words” have prompted a contentious divide in the autism community, opening Pandora's box with far-reaching implications. The verbal “higher-functioning” autistic self-advocates, many of whom are supporters of the “neurodiversity,” movement, assert that the “condition” represents a neurological difference and a disability that should be accommodated, embraced and even celebrated by society, rather than prevented or cured. Now, juxtapose this view with voices in the medical community and parents of autistic children with severe traits (limited (or no) language, minimal daily life skills, self-harm and Intellectual Disability), who view autism as a formidable disorder and developmental disability that necessitates intense treatment and services. As stated in a 2019 Washington Post article: “Which word someone uses to define autism is more than an intellectual exercise. It affects how the public views people on the spectrum and their quality of life, as well as access to job placement programs, housing and health care.” And, I would add, also the future of autism research. Personally, I believe the general medical diagnoses of Autism Spectrum Disorder (ASD) are too broad, leaving individuals with more severe autistic traits overlooked.

Since f ounding R ockaway Beach Autism Families, meeting more individuals on the spectrum, I have witnessed the vastness of the spectrum. This is why I side with the camp that asserts autism is a disorder and disability that necessitates research into treatment and services that could alleviate the more severe autistic traits. Note, I did not state, “cure,” or “eliminate.” My daughter’s autistic nuances add to the beauty of what makes her special, yet every day, we work to find any means that could help her attain some semblance of independence.

As stated by Amy Lutz, a parent and founding member of the National Council on Severe Autism (NCSA), the first advocacy organization to exclusively focus on the needs of autistic people who require higher levels of support, “There’s a wide abyss between someone who is very mildly impaired and someone who is severely impaired with intellectual disability and different kinds of comorbid conditions… There’s no one speaking directly for these families.” Many NCSA parents have protested that the neurodiversity focus of higher-functioning autistic self-advocates drowns out the needs of autistic people who cannot speak for themselves.

However, not all higher-functioning autistic individuals buy into celebrating autism as just a difference, not a disorder. Tom Clements, a British, mildly autistic man with a severely autistic brother, wrote an article in The

Guardian, asserting that the fashion for celebrating neurodiversity ignores those with severe autism. His article generated tremendous backlash, with some even accusing Clements of painting autistic people as “burdens, toxic and catastrophes."

Now, as a parent advocate, I see many positives in the neurodiversity movement—such as building autism awareness, acceptance and accommodations for services, employment, education and other opportunities. However, as pointed out by Manuel Casanova, professor of biomedical sciences at the University of South Carolina, the loudest voices in the neurodiversity camp are deflecting focus on the needs of severely autistic individuals. “If these opinions ultimately sway public opinion, it might end up hurting research, and delivery of services to those people who most need them.”

This is why I agree with Clements that the medical diagnoses of autism are too broad. “It has become apparent, not just to scientists but to many in the community, that autism needs dividing into separate conditions, starting with the reintroduction of Asperger syndrome, as an important differentiator between mild and severe variants… It’s high time that the lower end of the autism spectrum was treated with the seriousness it deserves. The wellbeing of some of society’s most vulnerable people depends on it.”

Join RBAF as we host Rockaway’s first-ever Walk for Autism on the boardwalk—Sunday, April 23, at 11 a.m.! Note, the walk route has been revised to START POINT: Beach 96th Street & the boardwalk/ END POINT: Beach 126th Street & the boardwalk. All welcome! We’ll have giveaways, plus tee shirts for sale! After the Walk, join us at RBQ (97-20 Rockaway Beach Blvd.) for an afternoon of live music and fun! Register in person on the day of the Walk or online: www.rockawaybeachautismfamilies.org. For further info, visit: Rockaway Beach Autism Families on Facebook/ Instagram or email: kami@rockawaybeachautismfamilies.org. Hope to see you there!