The whole kerfuffle at Autism Speaks over Suzanne Wright's recent piece has spread to the "venerable" Huff Post with a counter by Linda Mastroianni entitled, Autism Speaks, Your Negativity is Only Making Things Worse.
Unfortunately AS is not much liked by anyone in the autism community for a number of legitimate reasons. This Huff counter piece is, at least, not the rantings of a neurodiversity extremist. Still, to me, it misses the point entirely: that there needs to be a concerted effort by governments to develop an action plan to deal with the rising tide of autism in North America. That needs to include support for families, both with regards to early intervention strategies, respite support and appropriate out-of-home living arrangements for adults with autism. This is Wright's argument whether you like the way she says it or not. Mastroianni doesn't address that. "I don't ever want my son growing up thinking that he is a burden to his family or to society." Your child is not the burden, but his autism is, and for many, without early intervention programs in place and universally accessible, family and society will indeed pay a price. Wright's point once again.
She also pulls out the tired old line, "If you've met one person with autism, you've met one person with autism", yet, autism has particular characteristics that do indeed make it "autism" as opposed to "Down's Syndrome" or "foot and mouth disease". I mean....if you've met one person with CP, you've met one person with CP. Autism is not unique in that regard. It's a piss poor argument to use in trying to keep all individuals with autism to be painted with the same brush, furthermore, when all references to the negative aspects of living life with autism are viciously attacked as ableist propaganda by those less severely affected by the disorder. In other words, maybe your experience with autism is A OK with you and we all have to accept that, but by the same token, when others face a different reality and attempt to express it, it's not fair to go on the attack. Mastroianni expresses her delight at the progress her autistic child is making, but fails to acknowledge that for some, progress never comes. "By no means do I want to diminish the struggles that many families deal with on a daily basis with their autistic child", she claims...but you do, madam, you do.
But everyone hates a whiner, yes? "Instead of instilling fear into families lets instill stories of hope and perseverance", enthuses Mastroianni. Yes, dear readers, here in the land of severe disability we must not be negative. It offends the sensibilities of the blissfully unaware. We must "persevere", "be strong", "fight the good fight", "keep on truckin'" and "inspire". And when we are tired at the end of an endless day, when words fail us as we watch our children suffer the gamut of neurological storms, when our money runs out, the insurance won't pay, the marriage breaks down, the hundredth diaper gets changed and the help cancels out, we must remain stoic and count our blessings. To cry is weakness, to become angry is selfish, to fall to our knees, capitulation. To ask for help is to further burden an already burdened system, and who are we to claim such rights for our broken children anyway?
I love my daughter with all my heart and soul. I don't think that I have ever come across anyone on this severe disability road who has not expressed the same unbounded affection for their child(ren). But, damn, it's a hard life and there are certain ugly truths to it, both for our kids and for our families. It is by the grace of whatever divine forces there are in the universe that we are able to carry the two realities...the great, life altering love and the sometimes awful pain...in our hearts. To deny the expression of the bad, to smooth over the rough edges all the time does not serve anyone: neither the parent/individual who needs kinship or the world that needs to hear and help.