Carly Fleischmann is an amazing young autistic woman who has gained notoriety for achieving a “breakthrough” in her “severe autism”, learning how to communicate by typing on a computer.
Most of us have already heard of Carly. We make it our business to keep up with autism news stories. And make no mistake, Carly IS amazing. It’s just that…she’s also possibly an anomaly.
When people see Carly’s story on 20/20, they are inspired. They’re inspired because people don’t expect someone with severe autism to be cognitively equal to non-autistic peers. It’s the truth. When we see someone that can’t communicate, can’t control their body movements, and their behavior is challenging, we just can’t imagine that their thoughts and feelings could mirror our own.
The challenge with someone like Carly is two-fold. First, it brings our bias and prejudice about autism into stark outline – we don’t believe that autistics are equal to non-autistic people. When we are shown a legitimate example of someone learning and overcoming their challenges so their voice is heard, we are amazed and awed by this wondrous achievement. It’s as though we didn’t believe the possibility existed that she was a whole person with her own thoughts.
On the flip-side we have another problem, and that is with people generalizing Carly’s achievements to anyone and everyone they know who is autistic. Just about everyone I know has been “Carly’d” at some point, which means that some friend or family member was compelled to share Carly’s story with them, because “maybe it will work for your child too”. (I did not make up this term.)
Carly has become our very own Lady of Lourdes. I fully expect to see her image on a piece of toast, or embedded in someone’s granite counter top.
While everyone has their own unique potential, not everyone will have the breakthrough that Carly did. The big truth about autism that no one wants to talk about is that sometimes people do have autism AND cognitive delays. Sometimes those delays are significant, and a person can grow into adulthood and still have the cognitive ability of a child. So while Carly achieved success using assistive technology, others may not.
In short, we are supposed to presume competence and equality, while not necessarily expecting miraculous outcomes.
And THIS is a major stumbling block in the autism world, and especially between advocates and parents. Those that are active autism advocates will undoubtedly have a cognitive level that is at least close to “average”, while many parents are advocating for children that are significantly below the average, and unable to advocate or comprehend advocacy efforts.
According to an article on science20.com, about 40% of children with autism also have an intellectual disability. That translates to roughly 4 out of 10 people with autism have some degree of cognitive impairment. Now compare that to a study by Left Brain Right Brain, that shows an incidence of intellectual disability in the general population to be about 1%. Based on these studies, it is clear that there is a higher likelihood and prevalence of intellectual disability among autistics.
Carly is a role model. And while she does serve as a wonderful example to many, she also serves as an impossible standard to at least 4 out of 10 autistics.
And for me, that begs the question, how does the autism community effectively represent and advocate for people that may never achieve a degree of independence? Are the goals of advocacy in alignment with the needs of the entire community?