April 2nd Two Thousand Something. Another World Autism Awareness Day.
As a father of two young men in “the spectrum”, I usually don’t advocate for “awareness”. I ask for respect, compassion and understanding.
Long time ago I used to share some of our experiences raising children with autism. But I felt it was impossible to share stories without invading our sons’ privacy (and our daughter’s as well). So I stopped. There’s one thing I can still share. Life in the spectrum is challenging at every stage.
There are plenty of misconceptions regarding the Autism Spectrum Disorder (ASD), in particular around the misleading term “high-functioning” autism. Life for individuals with severe ASD brings extraordinary challenges. I can’t even dare to imagine them. But life for individuals diagnosed as “high functioning” is not “a walk on the park”.
On a day like today, we’ll be showered with amazing media stories of individuals who have successfully overcome the challenges of autism. Yes, these stories are important, inspiring and commendable. Keep them coming. Unfortunately, these stories won’t show the whole picture.
Each success story my sons could tell (and there are plenty) will be accompanied by ten more describing their failures, frustrations, and struggles to achieve those successes. And those struggles are not your typical struggles. These leave emotional scars and long-term traumas. They are not a thing of the past either. Challenges and barriers take new forms and shapes as they keep experiencing the world they live in.
Here are some highlights from an extremely well-written article, by Lisa Jo Rudy, that briefly explains Why “High Functioning” Autism is so challenging:
- People with high functioning autism, while they may or may not be unusually intelligent, rarely have the kind of intense motivation for public success that sends a Bill Gates to find funders or an Einstein to find a publisher.
- They may also have significant challenges which stand in the way of living a comfortable life, succeeding in work or romance, or achieving a sense of self-worth. Those issues are made more challenging, in part, because they surprise and upset others who don’t anticipate odd behaviors or reactions from people who “pass for normal” in many situations.
- While people with more severe autism are not generally expected to just suck it up and get through difficult moments, people on the higher end of the spectrum are expected to do just that.
- Lastly, people with high functioning autism are, in general, very aware of their own difficulties and extremely sensitive to others’ negative reactions.
As Lisa Jo explains, and I echo here, high functioning autism is not an easy or simple diagnosis to live with. It’s neither a synonym for genius or savant (I despise these characterizations, by the way).
So, today, on Autism Awareness Day, for those who care for, employ, teach, work or simply interact with individuals on any realm of the spectrum, remember, autism is autism.