Today, April 2nd, is World Autism Awareness Day.
On this day (and every day) I refuse to get drawn into the wars between those who search for a cure, and those who despise the search for a cure. I refuse to get drawn into the wars between those who would desperately want to “fix” their children, and those who wouldn’t want to change a thing.
Here’s how I see it. Basically the “cure” and “no cure” folks fall into two camps, and what it boils down to is the level of severity of the autism they experience.
If my child is mainstreamed completely, or mainstreamed with a classroom aide, if they are able to keep up academically with their “typical” peers, if I have no doubts about their ability to function one day as an independent, self-sufficient adult, if my child is happy and secure in themselves – then I wouldn’t want anybody telling me I had to “fix” my child. I would be angry with those who viewed my child as somehow “not good enough” or “broken.” I’d be angry with those who highlighted my child’s disabilities and imperfections instead of how amazing and beautiful they are. And I’d be right.
If my child is a non-verbal teenager who can’t tell me when they’re sick or hurt, if my teenage child is still in diapers, if I live in constant fear of my child’s wandering, if my child will NEVER be mainstreamed in any way, if my child’s IQ falls in the “poor” range, if my child regularly beats their head against the wall, or sometimes even beats ME, if I wonder despite all my hard work and legal planning for the future what will become of my child when I’m no longer around, if I get the sense that my child is sad, depressed and overwhelmed with LIFE – then I would fight till my last breath to find a cure that would bring my child out of the darkness in which they live. I would use all the energy in my being to raise funds for research so that this doesn’t need to happen to other children. I would be angry with those who said no cure was needed. I would feel left out by those who described my child’s condition in life as “beautiful,” when all I feel is tired and scared.
Both of these scenarios are autism. I personally see both in my own community.
What I don’t understand is why the two “camps” are constantly AT each other. I am thrilled for those with autism who are independent, capable of interacting joyfully with their environment and are able to celebrate their differences. And I truly feel for those who struggle with autism’s serious challenges and REAL fears every day.
Why can’t we support research for a cure for those who are severely disabled and celebrate the successes of those able to overcome autism’s challenges at the same time? Why can’t we support research AND funding for services at the same time and also recognize that some children are fine just the way they are?
Why do we FIGHT against each other when our better energy could be spent SUPPORTING one another?
There is a phrase, “When you’ve met one person with autism, you’ve met ONE person with autism.” It’s true. So why must we in the autism community feel the need to say “you’re with us or against us?” Why don’t we use the same “spectrum” our kids are under, and allow OURSELVES the same kind of “spectrum” in how we respond to autism?
I refuse to be drawn into the wars. I’ve said this before so you know where I’m coming from – I love my daughter and I would take away her autism if I could. But I also respect you if you love your child and joyfully celebrate the autism that is theirs. Don’t judge me, and I won’t judge you – let’s just love our kids – and on this World Autism Awareness Day try to make the world a kinder, more accepting place for us all.