Functioning
September 3rd, 2010I’m breaking cardinal rules 1 & 2.
1) Thou shalt not blog whist PMSing lest you say offensive shit and piss off all (three) of your followers.
2) Thou shalt not drink and blog. Ever.
Consider that my disclaimer.
I want to talk about this “spectrum” of Autism. These descriptive labels that are one size fits all in a tailor-made world.
I want to talk about what high-functioning means to me.
I believe that clinically a child with Autism can not be considered “high-functioning” until they are around age 8 (and able to complete an IQ test). At least this is what my son’s specialist has told me.
Still, most people draw a distinction much earlier. Generally that distinction is deduced by the individuals’ ability to communicate. Communication is not language. Let’s be clear here. You can memorize the Mandarin dictionary tomorrow and not know how to order Dim Sum. Yum…Dim Sum…oh yeah, I digress.
I am not saying that I believe it is accurate to label people/children really, by the amount of words in their vocabulary – quite the contrary – I think it’s a horrendous disservice. I’m just stating that it happens. A lot.
When P was diagnosed with Autism at nearly 24 months he had practically no language. He had very little eye contact. He perseverated on objects. He did not answer to his name. He did not know that I was Mommy or, I like to tell myself that he DID know, he just didn’t know how to make me know that he knew.
He was developmentally delayed in every way possible. He originally scored “moderate to severe” on the diagnostic tool.
We worked very hard. His therapists worked very hard. Peter worked very hard. He improved, substantially. I need to add a very important caveat here. Many families work equally as hard, if not harder, and don’t have the positive results we have had. I am in no way declaring us superior. On the contrary, we are lucky.
Somewhere along the way Peter gained nouns, and then verbs, and now his vocabulary is actually above that of a typical four year old. He’s very bright as well. He does simple math, reads, is amazing with patterns and puzzles.
I guess that’s why most people consider him “high functioning”.
I won’t argue with that assessment. Who would? I’m grateful that he can speak, listen (kind of) and that he doesn’t seem to have cognitive struggles. I am proud of him. I am humbled by him. I am grateful every single day for his progress.
I need to make a very clear distinction. If you take nothing away from this post, please take this, high-functioning does not mean any of the following:
- Cured
- Communicative
- Misbehaved
- Less Autistic
I don’t believe there is a cure for Autism. I believe that a person with Autism has a different brain chemistry. I do not believe it can be cured (with current medical technology). I believe that a person can adapt and perhaps appear neurologically typical through much work. But I don’t believe that makes them any less Autistic.
Just because you have words doesn’t mean that you can communicate your wants, needs, and especially emotions. It also doesn’t mean that you can process social cues and the emotions of others. See Dim Sum example.
A person who is high-functioning is not coddled or simply suffering from a behavioral problem. Are behavioral concerns present co-morbidly with Autism? Absolutely! As they are in any other population. There are also behavioral problems that arise due to an individual not being able to self-regulate their emotional state, or communicate, or due to anxiety or the inability to understand social cues. So, in effect, these are behaviors but they are related to brain chemistry and must be addressed in a way that is cognizant of the persons Autism.
Most frustratingly is when a person who is “high functioning” is considered less Autistic or “easier” (note, the two are not related). I know typical children who are absolute nightmares for their families. I know nonverbal children who are compliant and calm as can be. I know children all across the board who have unique strengths and challenges. This is why it’s considered a spectrum disorder. Our children might be lumped into one diagnosis but they are each individuals.
We all have our struggles though. While my child is verbal and he seems to be cognitively high-functioning, he also cannot be left alone for even ten seconds. He will run into traffic, or poop on the floor, or climb onto the refrigerator to reach the cereal, or pour soap all over the bathroom floor to go skating. His tantrums are so seemingly “out-of-nowhere” that I cannot take him in public on my own for fear that he will harm himself, me, or others. He has major sleeping issues. He has extreme struggles with emotional regulation and anxiety.
My son’s greatest disability is that, at first glance, he appears to have no disability at all.
Here’s the thing. Don’t tell me he’s cured. Or that his needs are less. Don’t tell me it’s easier. Because it’s not. My life is not easy. None of our lives are easy. We are all struggling silently in very different, but absolutely the same, ways.
Most importantly, I think we all need to step back and realize that it’s not a contest. I don’t question your struggles and I don’t feel that I should be compelled to justify mine. Being a parent is damned hard. Being a parent to a child that is different is super-damned hard.
So let’s all try really hard to leave the labels behind and focus on the one thing we all have in common, that we will fight any battle (and win) for our children.
P.S. I have the most amazing Autism Mommy friends ever, and I can assure you that not one of you had anything to do with the genesis of this post. It’s just something I’ve been wanting to share with the world for a while now.
