I have the same mixed feelings about Autism Awareness Month as I have about Mothers Day. They are both nice ideas on the surface, but they do have their down-sides. Not everyone who would like to be, can be a mother. Not every mother is wined and dined, or even gets a Hallmark card. In fact, there is a large group of women who are sad and embarrassed every Mothers Day, because it only serves to underline their deviation from an idealized picture. Similarly, a writer who is autistic recently noted that she doesn't need a special month to become aware that she's autistic or to have this reinforced by others. She added caustically that some of the major organizations devoted to autism, such as The Autism Society of America and Autism Speaks, don't employ, or ask for input from, autistic individuals themselves. So who is this month actually for, she wonders.
I would guess it's for the fundraisers, the people running these organizations, who want more money for research into the causes of and to some extent new treatments for autism. As a grandparent who wants to stay current with available knowledge, I continue to pay dues to both these organizations, even though I (like the autistic writer) have doubts about the value of proclaiming special months.
My goal--and I believe this is one of our greatest responsibilities as grandparents of autistic kids--is to learn as much as I can about what is known. The problem is that so little is really clear. There are so many different points of view about causes and treatments. Is ABA the only evidence-based program, and the only program that works? What about Floor Time, so persuasively described by Dr. Stanley Greenspan? Are any new ideas coming down the pipeline?
So I visit the official organizations every so often to check out what's going on. However, the most enjoyable way I've found to pursue this information is more personal. I have been discovering various online sites written by highly self-educated parents of autistic kids and sometimes by autistic individuals themselves. While the official organizations provide links to current research and new approaches and give some sense of the big picture, their impersonal nature makes them less compelling than the voices of parents and autistic adults, the people in the trenches.
Here are some of the sites that offer quite a bit of helpful information and are interesting to read as well:
Take a look at some of these; listen to the individual voices in them Tell me about writers you discover as you explore this world that you and your children and grandchildren are now part of.