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.

5 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.

  4. Anytime I talk with someone about our current diagnosis, Severe ADHD, people have lots of opinions. When I mention, my honest feeling that it might be “more” than that, they fall silent. It’s odd. Like you said, I DON’T WANT the label. That’s the last thing I’m searching for. I just want to face the truth and have support through what’s to come. Everyone, and I mean EVERYONE has some “story” about ADHD, basically poo poo’ing the diagnosis. I have yet to hear anyone poo poo autism – but I’m not officially in those circles yet. I really just want to hide away with my daughter, and protect her from the judgement that can come with such labels. I want to tell the world to buzz off, quit judging us, and let us live. It’s the good days that magnify the difficult ones. Yesterday, was a good day. The relief, gratefulness, and hope I feel on a “good day” for me, confirms that something more is going on. If it were within her control, my girl would have good days everyday. Wouldn’t everyone? Sorry for rambling. I can’t wait to devour your blog, post by post…

  5. Re: “Seeking the label.” I have fibromyalgia. When I was diagnosed, it was comforting to have a “label.” Not that the label itself was comforting, but that, instead of having a diverse and seemingly random set of aches and pains, I finally was recognized as something other than a hypochondriac, and knew that there were researchers actively seeking causes and treatments.

    A parallel story: My grandson was routinely scolded and referred for misbehavior in kindergarten and first grade until he was diagnosed with ADD. The diagnosis meant he wasn’t just a “bad little boy” with parents who were disciplinary failures. So, it’s not really the “label” parents are seeking, it’s the services their child is not eligible for until “labeled.”

    And the up side is, now that a larger number of children are “labeled” as autistic, the condition is gradually getting more funding and more research, and possibly more understanding from educators. I ran across your blog while trying to determine whether I may have Asperger’s syndrome.

    The county I live in has two school districts. A few years ago, because of lack of funding, one of the districts raised the bar for eligibility for special education services. Some parents suddenly were told that their child was no longer eligible. Some people had to physically move their residence to the other school district so that their child could continue to benefit from special services.

    School budgets are finite and, in my state, inadequate. I worked in secondary career and technical education (CTE) for 15 years. Technical education (agriculture, auto tech, business, food services, and so on) was continually cut so the special education budget could be maintained. However, many of the students in high school CTE programs were special needs students who probably would not go on to higher education.

    Programs for “gifted and talented” students were also cut. One mother, who had both a gifted child and a special needs child commented that one child’s needs were sacrificed to those of the other. However, some special needs children are also “gifted and talented.” My friend’s grandson, who has Asperger’s, is a standout in music, which is always in danger of being cut. He might have benefited more from CTE; he graduated almost a year ago and has not yet sought employment or higher education.

    I wish you well and admire your blog. I hope you won’t mind my morning rant. It will be today’s entry in my journal.

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