Why the governor's proclamation on autism made me wince

Opinion editor's note: Star Tribune Opinion publishes a mix of national and local commentaries online and in print each day. To contribute, click here.

•••

We recently received a newsletter from the Autism Society of Minnesota (AUSM) explaining its rationale for switching terminology from the previously used "Autism Awareness Month" to "Autism Acceptance Month." I was dismayed to read the statement made by the governor:

"Minnesota acknowledges the limits of asking for awareness and promotes and celebrates the acceptance and appreciation of people with autism as the next step beyond awareness," said Gov. Tim Walz in his proclamation. "Minnesota acknowledges that although this celebration of autistic culture and community provides a starting point, that there remains significant room for progress towards equitable access and inclusion for all Minnesotans with autism."

His statement reflects a clear lack of understanding and dismissiveness toward the approximately 50% of individuals (and their families) who suffer with what can be an extremely debilitating developmental disorder. Many longtime AUSM members do not share their current position and philosophy regarding autism "acceptance."

By stating that "you shouldn't try to fix people who aren't broken," AUSM is not acknowledging that for 40-50% of autistic people, autism is a very serious, devastating condition. These individuals are left out of the conversation because they cannot typically speak for themselves and their family members are discounted if they speak on behalf of them. The flawed logic is like saying we should "accept" blindness or deafness or any other disability because there is no cure and many of these people live very fulfilling lives if they are simply accepted.

The fact remains that blindness, deafness and autism are still disabilities. Thousands of autistic people are born with serious cognitive, sensory and/or neurological dysfunction. Whether these traits are referred to as "comorbidities" or recognized as part of the autism diagnosis for many people is irrelevant. They are still living with a disability.

We adore our autistic daughter exactly as she is. But that doesn't mean we would wish on anyone the heartache, frustrations and limitations she lives with on a daily basis as a result of her condition. She often says she "wishes there were a cure for OCD and autism." Could there be a cure for the neurological dysfunction that causes her brain to cycle in circles and short-circuit into violent tantrums? Maybe there could be. We might never know if funding for autism research is stymied because a certain subset of autistic individuals do not wish to acknowledge it as a disability.

The staggering increase of autism should be great cause for alarm. Research, prevention and programming are seriously affecting by the dismissive tone that AUSM has adopted toward the seriousness of this condition. I am, quite frankly, disgusted by this attitude. AUSM is no longer advocating for half of the very people it claims to serve. While we accept our daughter, we will never "accept" autism — or any other developmental disability.

The National Council on Severe Autism (NCSA) recognizes this. It is long past time to separate the diagnosis of mildly autistic people, whose brain structures more closely resemble ADHD, with those who have been born with profound autism. It is time to recognize that one size does not fit all.

Dawn Kovacovich, of Bemidji, Minn., is a retired special-education teacher.