Search This Blog

Tuesday, March 3, 2015

One Parent's Perspective

Jody Allard writes at The Huffington Post:
I've never been normal, really. I was born without fingers on one hand. I suffer from mitochondrial disease, a genetic illness that has left me disabled in my 30s. I understand that these things aren't "normal," and I don't need them to be in order to feel valued. I do not believe that my self-worth is found in my fingers or my genes, and I have no trouble reconciling the fact that I am both abnormal and worthwhile.
Perhaps this is why I simply do not understand the push for autism to be considered just another variation of normal. Or something to be merely accepted, without searching for treatment, prevention or even a cure. Autism is a neuro-developmental disorder that may have a multitude of different causes. Why has it become taboo in many autism circles to suggest that autism is a disorder that merits searching for prevention or a cure? Instead, we are told that we should simply love and accept our children for who they are, not seek answers.
It's a beautiful idea, this rhetoric about autism as something to be cherished. It creates a facade of acceptance and tolerance that makes everyone feel good about themselves. After all, we all know someone with autism. Now we can pat ourselves on the back for how open-minded we are. And there is nothing but good that can come from learning to accept and tolerate people who are different from us -- whether we are talking about autism or not. But here's the thing: Opening minds and hearts to autism will only remove some ignorant interactions and obstacles from our path. It will not ease sensory pain or gastrointestinal problems. It will not dissolve speech delays or improve social functioning. It will not eradicate the need for accommodations for my daughter to attend school.

Acceptance of autism is a valuable step in the process, as it helps remove the stigma surrounding being different. It leads us, as a society, further from judgment and closer to compassion. But when autism is viewed as just another variation of neurological function, it has the potential to limit or even eliminate access to research, therapies and desperately-needed accommodations for children with autism. It sacrifices real-world needs for feel-good romanticized ideals. And it ostracizes parents who are doing the best they can for their children.

It's OK to be different. It's OK to have health problems. It's even OK to have special needs. If the only way that we can accept our children is to seek to normalize them, perhaps it's time to ask ourselves why we only value "normal" children. It isn't a sign of love to deny your child's differences, and it isn't a sign of weakness not to glorify them.