labels

I read an article recently that blamed the skyrocketing number of diagnoses of Autism on the fact that ‘many parents actually seek the label because it opens the door to services, especially in the public schools, that they might not otherwise be able to access.’ It bothered me when I read it, but weeks later, I find it still festering somewhere in my being, eating away at me. For heavens sake, I want to shout, are these people serious?


As the parents of an autistic child, we spend so much time trying to digest the label, understand the label, avoid the label – trying to get over, around, and through the label, to God willing find a way to some day no longer meet the criteria for the label. The label represents everything we don’t want for our children.

We live our lives in fear of the reaction to the label, creating secret communities of support for ourselves and our children, contorting ourselves to avoid the discrimination that comes with the label. We torment ourselves knowing full well that we need to promote awareness to foster support and understanding while struggling with the indisputable fact that both children and their parents can be cruel in the face of that which they don’t understand.

We struggle to reconcile our desire to work for the good of all children with Autism by identifying our own, thereby de-mystifying the label, and the knowledge that we are putting our own children at risk by outing them into a world that is not always ready to receive them.

Luau and I have made the agonizing decision to speak publicly on behalf of our daughter and others with Autism. In the midst of a fiscal crisis, our town, like so many others around the nation, began to debate what to cut out of our school’s budget. Many of the services that are so vital to Brooke’s success were on the line.

I chose to speak before the town board, the school board, the superintendent, and others when it felt to us like it was no longer a choice. Luau and I decided that there was no way to stand by silently when Brooke’s access to education, to interaction, to a quality life, were at risk. However, not everyone can make that decision.

The day after my first speech, which was televised on a small town station that I thought no one would actually watch, I was shocked when I got to work. My inbox was flooded with incredibly emotional private e-mails from people that in many cases I’d never met. They thanked me for speaking out and offered their support. It was amazing to me to find out just how many people there were in the shadows who struggled just as we do with finding a way to protect their children while living in the same fear of publicly labeling those kids.

I understand the need to find reasons for the confounding epidemic that is Autism, and I am grateful for those who put their time and talents toward that end. But I respectfully ask those who would point the finger at parents looking for a key to support services to look elsewhere.

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3 thoughts on “labels

  1. Pingback: what’s the point?? « diary of a mom

  2. Pingback: what's the point? « a diary of a mom

  3. Just reading this…been in a pensive mood lately… wondering if my daughter may go down the road toward apraxia (and maybe mama could use a bit more sleep?) along with PDD-NOS. I think, to somebody looking in, it may look like that”searching for a label”.. As we struggle to figure out what best “fits” the needs of our children…what combination of services is best going to support their needs… what is going to help them fly. Forgetting that who ever seeks to have these labels in the first place?

    Before my daugter was first evaluated, I mean first FIRST evaluated, we looked at typical daycares… for a minute… and there was an orientation… with the parents who did seek to label their kids “my kid is picky…” or “they only sit in a high chair…” or “allergies”…we knew by the end of that orientation that my daughter wasn’t going there. Because our reason for labeling her was much different.

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