Thursday, October 16, 2014

Why I hate functioning labels

    I do. I despise functioning labels. I don't care for labels at all, but as autism parents, we all know these labels get our kiddos the help that they need. The functioning labels are the worst though.

  They are designed to show where our children are on the spectrum, yet they are actually limiting our kids.

    Here's an example of why I hate functioning labels. Liam has been diagnosed by four doctors as being autistic. (as well as Bipolar and MANY other things. He has a full plate.) Two of which said he is high functioning. The other two said he was moderate.

    Why two different functioning labels? Let me tell you. Liam's IQ is 120.  He tests gifted in Math and in Vocabulary. YET, his reading comprehension is bad. He can read to me, but he can't tell me what it was he just read. He is considered learning disabled in that area. Even though he spoke early, his speech was so hard to decipher, it was considered as a speech delay.

    So it would seem that based on his IQ and some of his test scores, he is "high functioning." But, based on his "disabilities" and behaviors, he is considered moderate.

    Liam has also learned to "pass." For those of you not familiar with the term, "passing," it is when an autistic is able to pass as "normal." There are some days where Liam can play with his peers or be in a public setting, and no one would know he is on the spectrum. However before long, "passing" becomes too much work and a meltdown ensues. There are also days where he doesn't even try to pass. It seems that at 8, he has realized that around the people that accept him most, there's no need to pass. So around new people or in public is when he attempts passing.

    So you see, Liam is literally, all over that spectrum. He doesn't fall into one convenient slot. The more parents I speak to on my page, the more I have learned that Liam isn't alone. So why do doctors and therapists insist on using these functioning labels? Even though the DSM V caused an uproar by removing "Aspergers" as a diagnosis, knowing what I know now, I have to agree. I am glad it's gone.

    You know what else I don't like? I don't like when I am speaking with other autism parents and they act like Aspergers makes their child better than mine. Does it matter? It's all technically the Autism Spectrum now. There is  NO Aspergers. So please, don't use that term to one up other autism parents. It hurts!

         Autism isn't a competition.

    I don't care where you or your child fall on the spectrum. My child doesn't care where you or your child fall on the spectrum. People are different. Autism is different. Not one of us is the same, neurotypical or otherwise.

    So in my world, there are no labels. Last year I was told I was on the spectrum. The term she used was HFA. No. I am NOT HFA. I am simply on the spectrum. Where I am on the spectrum depends on the day. My mood. The situation.

   Basically, my autism is my autism. Liam's autism is his autism. And your autism is your autism. No functioning labels, just autism.

1 comment:

  1. I am autistic. I can "pass" for normal, but who wants to be conventional, average, typical, or mundane when they can be unique, extraordinary, sensational, or memorable?