I’m Not Afraid To Be Wrong

I have been blogging for almost a year now, first at My Son Has Autism which became Autismland in December of last year. I started writing here at AutismVox in March. And in nearly a year of writing, reading, and traveling in the autism blogosphere, I’ve sometimes put my foot in my mouth (or just on my keyboard) and definitely learned enough for several dissertation topics.

The autism blogosphere seems to fall into two main spheres, blogs by autistic writers like Ballastexistenz and Zilari and blogs by parents like Mom-NOS and This Mom, whose latest post got me to thinking about the difference between the autism parent perspective and that of autistic adults.

is autism devastating? certainly not always but sometimes, yes.
is autism a tragedy? certainly not always but sometimes, yes.
is having a child on the spectrum worse than having a child not on the spectrum? no.
is it better? no.
is it harder? yes.

my son’s autism makes it harder for him in the world.
it also makes it harder for me.
if it’s always harder for him, will his life be less important, less valuable, his perspective less valid? of course not.

talking about autism only in terms of the gifts and the joys is like talking about the beauty and joy and wonder of parenting without mentioning the boredom, the isolation, the depression, and the stress. having a child on the spectrum is like having all that beauty and joy and wonder and boredom and isolation and depression and stress at times plus the constant underlying concerns about understanding and responding to your child’s needs in the present so they have a shot at a good quality of life in the future.

Mom-NOS and Kyra and I are parents, mothers in particular, mothering our boys still under the shadow of the refrigerator mother theory of autism. We don’t have autism. We love our kids and want to do the best for them–which may not be what they will one day tell us was the best thing, just as my parents had certain plans and dreams and so forth for me that I, if I may so, rebelled against.

That’s the joy, gift, peril of parenting: I do what I think will give Charlie a good life (especially after I am not around) and if he can tell me one day, “Mom! You had it all wrong, you made some serious mistakes in my upbringing…..” I’d be d*******d proud.

As my mother-in-law said, “I’m not afraid to be wrong.”