My Autistic Child Isn’t ‘Diseased’
Finding out that your child is autistic is usually presented as a disaster, a financial and emotional drain that needs a long period of grief to come to terms with.
And with one in every 68 children — one for every three classes of primary school kids — receiving this diagnosis, it’s common to hear talk of an autism “epidemic.”
As a proud parent of an autistic child, I’ve learned that it’s unhelpful to think about it this way.
Autism is notoriously difficult to summarize. There’s a common expression that “if you’ve met one person with autism, you’ve met one person with autism.” Each one has their own way of thinking about the world. Instead of thinking in language, some autistic people think in pictures, or through more abstract feelings.
Autistic people are often over- or under-responsive to sensory information. For example, my son loves hugs — and taught himself how to somersault at the age some kids can hardly walk. Other autistic children find physical contact almost painful (but are no less loving for that) and can be physically clumsy.
These aren’t signs of a “disease” so much as they’re natural variations in how people are. Talk of an “epidemic” has fostered junk science, like the discredited theory repeated by President Trump that vaccinations cause autism.
Epidemic talk creates a harmful stigma and gets people pouring money into a search for a “cure.” But we’d be far better off investing our energies in creating a friendlier, more respectful environment for autistic people.
That investment would help parents too, since the biggest challenges in raising autistic kids result from a lack of adequate services.
Some people get it.
The Individuals with Disabilities Education Act — which came about as a result of civil rights struggles by disabled people — helps millions of autistic children receive support in schools. (It can continue to do so now that the Supreme Court struck down a judgment by Supreme Court nominee Neil Gorsuch that could’ve severely limited these services.)
The Affordable Care Act — aka Obamacare — also helps thousands of people receive essential health benefits like autism services, and the demise of the proposed GOP replacement has helped to secure those for now.
Representations of autism are slowly improving, too. For example, Sesame Street just created an autistic character called Julia who flaps her hands when she’s happy and avoids eye contact, like many autistic people do. But she’s one of the very first positive role models for either autistic children or their peers to relate to.
The situation can be even tougher for adults. Essential services tend to fall off a cliff after school age — with little support for everything from home adaptions to training programs. That’s damaging, as autistic people still face routine discrimination in finding jobs and college admissions.
Although a handful of more enlightened employers are starting to realize that autism can be a huge asset in the workplace, a lot remains to be done.
With Autism Awareness Day approaching on April 2, let’s focus on the real challenges that autistic people face: a lack of support and understanding. Let’s listen more to autistic people — and organizations like the Autistic Self-Advocacy Network — to better understand the roadblocks that our society throws in the path of autistic people.
Let’s rename it Autism Acceptance Day, too, and move away from talk of “disasters” and “epidemics.” Instead, we should focus on the positive contributions that autistic people make to our lives and communities.
And to families like mine.