“high functioning”?

A lot of us hear that term thrown around.

One explanation of High Functioning Autism:

High functioning autism is not an official diagnostic term, though it may be used as such. It tends to describe people who have many or all of the symptoms of autism but did not develop language typically. It’s a helpful diagnosis that can help guide appropriate treatment and school placement. On the other hand, it is important to be sure that a “real” diagnosis (that is, one that is described in the official diagnostic manual) is also placed in your records. It is this “real” diagnosis which may pave the way to medical and Social Security benefits down the road.

One useful explanation of the difference between Asperger syndrome and high functioning autism comes from the National Autism Society in the UK. Here’s what it says:

  • Both people with HFA and AS are affected by the triad of impairments common to all people with autism.
  • Both groups are likely to be of average or above average intelligence.
  • The debate as to whether we need two diagnostic terms is ongoing. However, there may be features such as age of onset and motor skill deficits which differentiate the two conditions
  • Although it is frustrating to be given a diagnosis which has yet to be clearly defined it is worth remembering that the fundamental presentation of the two conditions is largely the same. This means that treatments, therapies and educational approaches should also be largely similar. At the same time, all people with autism or Asperger syndrome are unique and have their own special skills and abilities. These deserve as much recognition as the areas they have difficulty in

So, the term “high functioning” is sometimes used to describe people who are on the “normal end” of the spectrum essentially. Those with Autism who can more easily pass. Or, those with asperger’s.

The question is, how do we measure functionality?

Today I spent the day doing testing to be part of a study for “high functioning” people on the spectrum. Throughout the day, I felt uncomfortable. I felt as though I had something to prove. My mind kept blanking every time I did a test and I felt like an idiot trying to answer all the questions (e.g. define the word calendar, number, presumptuous, etc). Yet, I knew that even if they thought I was stupid, they would just excuse it as me being less high functioning. If I did “too” well though, I felt that they were judging me even more. I spent the day worried that they didn’t believe me that I even have aspergers. At the end, they had another woman come in and interview me more. I felt as though she was interrogating me to see if I really have aspergers. She seemed not to believe me that I was diagnosed or to think it was a bogus diagnosis. I blanked out on how to explain what traits I have!

But, why do I care what she thinks?!

For starters, I want to be accepted into the study. I got $40 for today and I could really use money for the other steps. Not to mention that I really want photos of my brain!! Also though, I was worried of the “undiagnosing” me. I am an aspie. Having aspergers is part of my identity now. Sometimes it is annoying, but taking away the label isn’t going to make it any easier, it will just take away the small amount of solace I have in the sense of shared experience I have. I was scared that if I was too normal, they were going to take away part of my identity.

I was told by my college that if I wanted the accommodations I asked for, I should transfer to a school with a special needs program. I’m not high functioning enough to deal without having supports, but I seem to be too high functioning to be counted as “really” counting. I do suffer from my aspergers. I support the neurodiversity movement and do not hope for a “cure” to make all of us normal. However, I do suffer from a number of things related to being aspie. Also, I would have been much better if I had just been diagnosed earlier. It isn’t that I’m suffering “from” aspergers, it is that I’m suffering trying to fit some of those traits into the rest of my life and suffering to fit my life into the rest of the world.

It scared me that my identity could be “changed” by some doctor saying the word. I don’t know, if I were to get a different diagnosis, would I keep it instead or just ignore them? Anyone know what they would do?

I know a guy who was diagnosed when he was much younger with aspergers. He didn’t know about it until earlier this year because his parents didn’t think it was a real diagnosis or that he needed help. As far as I know, he did pretty well in school throughout and didn’t really struggle too much with his classes. However, socially he is super super awkward and has a lot of trouble. I am still shocked that nobody (since the original people) noticed something was up and tried to diagnose him. My only logical way to explain what I know about the two of us, is that I’m much “higher functioning” than he is when it comes to social skills but that he is less affected non-socially than I am. I could be wrong.

That however doesn’t fit in with how most people would view us. You meet me and, like many therapists, you don’t realize I have asperger’s. You meet him, most people know something is weird and that at the very least he is just a really awkward nerdy dude. So, if we were to both show up to be in a study or just both show up at a support group, he would be perceived as the “lower functioning” one. Despite the fact that I struggle even with the supports I have currently and he has never really had supports and seems to be fine. I can cook and he can’t though. I can respond to a conversation topic with an attempt to stay on topic and show that I paid attention. I am self-aware after learning so much about myself. He is not. So, how do we determine who is higher functioning?

Is our measure of success just how well we can “hide” our aspergers?

If so, most females I know with aspergers are super high functioning. Why does it matter to determine levels of function?

When many of us have found a way to overcome our labels and diagnosis and turn them into aspects of our personality and identity, why do we need more labels to make sure we are still judging ourselves?

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