Lately, I have come across a huge number of autism parents who believe that autism is about their children, not them, that it is their children’s story, not theirs, and that they therefore would be wrong to share any information about their children’s disability, their own coping strategies, or how autism affects their family.
I disagree, and I honestly believe that this movement is moving us backward in our journey towards acceptance. Once upon a time (not very long ago), children with autism were locked away. They were not challenged or enabled to become productive members of society. They were considered less than human, problems to be dealt with silently, a family secret. Parents didn’t speak of these children, is my main point here. Instead they remained quietly ashamed.
This new movement has the same end result. Children are locked away without awareness of the commonality of their disabilities. They are kept from accessing supports that would be available if their parents were willing to share their stories with those who could help.
So why do I share our story? Our struggles? Our triumphs? Because I am not ashamed of my son. I am proud of every gain he makes. I don’t think there is anything wrong with stating his disability or the ways it has affected our family. Numerous parents at the beginning of their own autism journeys have approached me, and I pray that our story has helped them.
Likewise, sometimes you must share information at work. I had intermittent FMLA leave last year due to my son’s challenges. I had to share some information in order to get approval and even to ease some of the tension with other teachers who had to cover for me when I dealt with emergencies. Once my coworkers understood why I was missing work, the environment became much less strained and stressful.
Finally, I know my son has been helped tremendously by learning that he is not alone, that there are others in our community who share his challenges and disability. If nobody ever shared their stories, so many people would remain isolated and lost.
Remaining silent (and seemingly ashamed) does nothing to promote awareness or community. And community is what pulls you through your darkest days. That is why I share our story.