high or low functioning: does it really matter? (Autism)

Is your child high or low functioning? If you have a child with Autism Spectrum Disorder, it’s probable you’ve been asked this question. How did you answer? Do you have a planned response if someone asks you this?

The Autism Spectrum is large, it encompasses a vast array of abilities, and now that Aspergers is included on the spectrum, it makes the range even greater. So this makes it difficult to answer the question of whether our children are high or low functioning.

I don’t know about any of you, but when we got our sons diagnosis we weren’t given a place on the spectrum. We didn’t get a pretty little star placed on a graph that explained our son. No, in my experience, our son is anything BUT explainable. Thankfully we are able to (sometimes) recognize that this is what makes our son unique. There is a way to figure out patterns, wants, needs, and communication styles of our children, but it isn’t without intense awareness and investigation into his daily, or more appropriately, hourly routines.

original by Ayla87 via sxc.hu

original by Ayla87 via sxc.hu

There are children on the spectrum who have arms and hands that curl into their bodies, there are children who don’t talk and children who do, children with comorbities such as Angelman’s Syndrome or Fragile X Sydrome, children whose sensory needs overwhelm them, children who understand more than others.

Jeremiah is nonverbal and gets extremely frustrated when he can’t communicate his desires. His sensory needs can overwhelm him and make him act hyper and out of control, or he can manage them well. He has no fear of cars in the street or of anything else really. Does this mean he’s low functioning? But there are children on the spectrum who don’t function as well as he does.

Jeremiah has good fine motor skills and can follow routines and directions if they’ve been in place daily for more than a year. Does this mean he’s high functioning?

Maybe people ask if a child on the spectrum is high or low functioning because it’s the only conversation piece they can think of when it comes to Autism. When I’ve told people (friends included) that my son has Autism, they look at me and kind of nod, like I just told them Safeway grocery sells bread. So, maybe the question of high verses low is better than nothing.

Maybe people ask where a child is on the spectrum because they are trying to make connections to what they know. That would be Rain Man versus Einstein right?

I wonder what outcome the questioner is looking for. If my child is low functioning, does the person feel bad? (Some Autism parents don’t want sympathy, but really, what else is someone supposed to feel for us? Apathy, joy?) On the other hand, what if I told them my son is high functioning? (He’s not, but let’s say he is for now.) Do they then feel like it’s no big deal? Like those who have a high functioning child on the spectrum have it easy, that it’s similar to having a neurotypical child?

A child on the spectrum is a child on the spectrum, and no matter where they fall on the graph, it presents many challenges for them and their parents. My heart goes out to parents of children who struggle more than my son. There are times when I can view Jeremiah’s disABILITY differently because he’s not in a wheel chair, he smiles at me, and makes eye contact. But the off days can weigh heavily on me, just as it can on any parent who has a child anywhere on the spectrum. So, in my opinion I’m not sure this question of high or low matters so much. I think excitement in the progress and sympathy in the struggle is warranted.

Have you been asked if your child is low or high functioning? How did you feel about the question? What do you feel are questions people can ask or comments people can make that would support you and your child?

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