Cross posted at Say Anything: Reader blogs.
Today is the first day of Autism Awareness Month. I spent this morning in a room with 8 or so other parents of autistic children (one dad, go dad!) and one autistic adult. She was diagnosed at the age of 36 or so and is just now hitting her forties. In her words autism is as new to her as it is to us parents.
We peppered her with questions about her past, present, and future. She was very candid about the amount of effort it took for her to sit and interact with us. From the preparation she had to do before hand (watching videos in the morning to get her words back, not unlike the non-autistic who can't function until they've had at least one cup of strong coffee in the morning, the picture schedules that remind her of the proper sequence for getting dressed in the morning, etc.) to the anxiety and sensory overload she would have to deal with afterwards (head banging, screaming, rocking, and other stiming behaviours to relieve her stress).
The stories that she told of past abuse at the hands of people who had no idea what to do with her were sobering. Years of mis-diagnosis, in and out of inappropriate institutions, misunderstood and mistreated by her own family. Her over all positive attitude despite all of strife and sorrow in her life was encouraging. She reminded us of the advantages and blessings that we have today that weren't available to her or her family when she was younger.
We all laughed together. We shared hopes and fears. We comforted those of us who were brought to tears by the love and burdens we bear for our children. We shared the wonder and awe at the things that our children have thus far accomplished (such as defeating every safety device that mom or dad installs to keep them from wondering off).
We talked about the stigma attached to autism. The misconceptions about what autism is and what autistic people are like. The frustration of family members in denial about the presence of autism in the family. The annoyance of having to deal with people who stare or who draw back as if autism is a contagious plague. We shared about the little (or not so little) bits of autism we have discovered in ourselves as we get to know our children better.
It was a refreshingly honest and realistic way to kick off the month for me. The public will be bombarded with the usual hysterical stories about vaccines, disparaging portrayals of autistic individuals, and interviews with vapid celebrities during this month of awareness. I got to sip from the fount of knowledge that is an autistic adult. (I still can't believe that a certain celebrity spokes person, who shall remain nameless, who is supposed to be educating the public about autism, once admitted that she didn't know any autistic adults.)