You are not the same

Addressing a common misconception about “functioning levels”

I visit many autism related group pages and read blogs, participate in forums, seek studies and information in many ways. I found this blog link here: addresses something I have been trying to say and explain very well.

One of the main diagnostic features of autism is our extreme profile of strengths and weaknesses in our neurological functioning. We have certain areas where we are able to perform the way an average (Neurotypical) person would, sometimes we function on an extremely higher or lower level than “average”, and the huge difference in the way we function in every day life is that we work in peaks and valleys continually because our ability to function varies so deeply from function to function, time to time, day to day, moment to moment. Our neurology is not reliable and consistent.

I have been working on a blog idea trying to explain this in regard to tests I have recently participated in. In 3 of the 4 test forms, the persons doing the tests wanted to set up “face time” for interviews and assessments using video live streaming and conferencing programs. Two of them explained to me that as part of their study I would answer a battery of questions and the group of people would watch and record manner of speech, vocal tones and nuances, body motions, expressions, etc etc. I tried to explain to them that I would be happy to answer questions in an email, but that due to my neurological processing I was not able to be effective in ‘real time’ conversations, discussions, etc. Oh, sorry then, you can’t be in our study.

OK, but I tried to explain that they were missing input from the people whose struggles their study was allegedly set up to help/ understand/ analyze. I tried to explain the extreme discomfort such interviews would have for most autistic people, how being expected to answer questions, knowing we were being closely examined by many people, and attempting to understand what was wanted, attempting to explain what they wanted to know, and trying to perform under the immediate pressure of questioning and being the center of focus in a group online would be avoided by the very group they were setting out to study.

I expect their study will not garner very many participants and that very many conclusions regarding the nature of autism in adults will be drawn using very few subjects who are able to participate in these sessions.

I see once again the huge flaws in most of the information we will get from these ‘studies’ because those setting up the studies to begin with are not inclusive, and have built in barriers to autistic participation in studies of this sort by not allowing for accommodating the very neurological struggles they claim to want to help.

Please read all of the comments on the link I posted earlier in this article. It illustrates the huge variety of ways in which we struggle as well as explaining that yes, we do function very well in certain areas of our lives, but that using those gifts to meet “normal” expectations takes a huge amount of energy and self will to perform.

What you see on the surface and make assumptions about regarding our ability to function is most generally not what lies beneath and surrounding the appearance of ability to deal with other aspects of our lives. So eloquent. Read those comments and understand that autism is not what you think it is, and I am not who you assume I must be.
I am much more like the autistic person in your life than it seems on the surface. “functioning level” labels is a fallacy, a myth, and impossible to use to describe any autistic person’s struggles.