Static Bubbles: The Myths of Functioning Labels

Autism Community Use of Language
Written by Corina Becker

In the Autism communities, the terms “high functioning” and “low functioning” are used quite a lot. However, when asked, the communities are unable to agree upon defining criteria for each. This has led me to look for a clinical description for each, specifically for Autism. However, I was only able to find the Global Assessment of Functioning (GAF), which is not Autism specific but can be applied to all diagnosis in the DSM-IV-TR. 

The GAF does not use the terms “high” or “low” functioning, but uses a numeric scale from 0 to 100, based on a person's overall and cumulative rating in social, occupational, academic and psychological functioning. While it does include communication, it is not completely based on one's ability to speak. 

I recall that some of the community definitions used speaking and some used IQ as the defining criteria for functioning. However, there seems to be problems with that. For one, there are critics of IQ test results who say that IQ tests are only for measuring learning, not for assessing ability. Researchers have been critical of IQ tests towards Autistics since a lot of tests are language and cultural reference specific, and results are inaccurate. As for using speaking as a defining criteria, it has been noted that the ability to speak does not indicate ability to communicate and articulate, nor does it accurately represent abilities in other functioning areas.

As I found there is a lack of a clinical definition of Autism functioning levels based on criteria given by the communities, I can only conclude that it does not actually exist. If it does exist, it in inaccessible to the general public, and by extension, Autistic individuals, their caregivers and family members. 

So I have to ask, why are we using terms that have no official definition as a part of Autism diagnosis? Yes, it can be used as a descriptor for a person at that given moment, but the community definition is inconsistent and subjectively based on each person's experiences. This causes a lot of wrong impressions to be made about Autistic people, which can lead to belittling of people's experiences and difficulties as well as false assumptions of people's ability to grow and develop throughout life. It also has the effect of treating Autistic people as things that are not human and have qualities that need to be assessed, judged and graded in order to be of any value. This is rather dehumanizing of Autistics. 

What might be needed is not just a consistent definition of Functionality with High/Low descriptor tags, but an understanding of what a Functioning score means. We can use the GAF and divide it evenly into High and Low Functioning with a 50/50 split. However, this should not belittle the differences and disabilities of those considered High-functioning, since it takes a very high rating to be considered symptom-free. Looking at the criteria, there are very few people off the spectrum who can be considered that high-functioning. 

Furthermore, I have seen the term High-functioning used to ignore any reference that an Autistic has difficulties and to dismiss their experiences. I have seen High/Low-functioning used as if the terms were static statements of ability, that once given, are permanent. Such usage is contrary to the realities of Autism. 

Autism is a developmental disorder, which means that while development milestones are delayed or missed all together, skills do grow and are learned. We do not live in static bubbles, but interact with our environment, respond to events and situations. 

As such, a functioning rating is not a fixed fact, but rather an observation on one's social, occupational, academic and psychological abilities at the time of the assessment. This rating can change, depending on many factors such as medication, support services, various therapies and accommodations, as well as from personal growth and development. It is based on information and details that are extremely personal, and to make generalizations on it is at least very rude and hurtful to that person. 

Since the information used to assess a functioning rating is personal, an actual rating should be private and disclosing it should not be a requirement for participation within the Autism/Autistic communities. As a supportive community, it is inappropriate to make judgements and assumptions on the way a person presents, and on a person's functioning rating, should they choose to disclose. We also should not be using such changeable labels to discredit others. In fact, we should move beyond the labels and focus on treating Autistics as people, especially when they are willing to share their experiences and assist in whatever way possible, under their own choice, and in our mutual efforts towards self-advocacy. It is one thing to keep in mind a person's diagnosis, but another to make assumptions on confidential and private details of their lives.

If a person chooses not to disclose, that is their choice and as a community, we should respect that and not imply that they are less in worth. Instead, we should remain open and treat them no less or any different than before. As a community, we should be supportive of all our members.


Posted in:

on December 15, 2011 at 7:23am


Comments

Currently I'd be classed as 'high functioning' on all levels, I easily pass as an NT. As a young child I was clearly 'low functioning' as I was non-verbal, unable to even use the bathroom until the age of 8 or 9, perminantly attached to my mother and an emotional wreck having constant 'meltdowns
I had IQ tests in high school, I scored 164 (on this particular test this result meant I was only two points short of mensa) but would have scored higher if not for the fact the assessor was female, which put me on edge. Now as a 28 year old, having reached a point of passing as an NT but now going through regression, I doubt I'd be able to even attempt an IQ test, I couldn't focus.
Also some of the most inteligent people I've met in the communities have been deemed 'low-functioning' based on their being non-verbal and unable to do most things by themselves...yet their inteligence is such that they can write complex and highly inteligent articles that put me to shame.
Given the difference in our abilities, and how our abilities can differ at different times and in different situations, yes...IQ tests are far from ideal for those on the spectrum, and so cannot be used to judge functioning. The idea of 'high functioning' and 'low functioning' is just too black and white, and with a 'disability'/'difference' such as ours such static terminology simply doesn't work. 

Even giving an overall functionality number doesn't truly make sense for autistics... Our abilities don't all develop smoothly in the same way simultaneously; one might be great at math & reading but behave like a very young NT, while the next could be fine in those areas but prone to self-harm when under stress.   Also, just about any "functioning" judgment right now tends to be based not on how well we can do various things (which depends initially on whether somebody showed us how to do them in a way that works for our brain) but how well we can do them NT-style.

I'm not happy with the functioning argument as well. Even though my son is classified as "high functioning" he still has deficits, and as you inferred in your post that fact has been used to deny him services and accommodations. I also dislike that it is used to create a division in the community where none should exist. I see kids on the "low functioning" end of the spectrum put into "severe and profound" disability classrooms instead of more inclusive settings. Meanwhile, their "high functioning" peers are often left without services at all and put into general education settings without proper support. 
I think dumbing it down to function levels really takes our community away from the unique and heterogenous nature of autism. It also calls into question the unique gifts and perspectives that exist in our community. We're better off leaving that concept out of our vocabulary, just as the African American community has rid themselves of the countless degrading terms used to describe skin color. 

LittleSwan's picture

I can't help but wonder if these classifications would work for anyone - whether they are considered on the autism spectrum or not. The more I read about the effects of hormonal shifts (due to menopause) the more I see that even NT's are often mystified by the powerful effects of our chemistry. I believe rating systems of the nature described are inherently inaccurate because the subject, a person, is too fluid in nature and intelligence to measure accurately.

Look, regardless of the ambiguities and kind of continuous variation in ability seen on the spectrum, this denial of high and low functioning disparity is just to dispel anger that is experienced due to perceiving that real disparity as an unfair injustice.  It's called the spectrum due to difference in aptitude.  We all know that there are some on the spectrum who have virtually no impairments who are successful and independent, while there are those in opposite conditions. 
There's no different ways of learning for different brains.  There are no different styles or whatever.  That idea is just individuals' unfulfilled ambitions repackaged as something to make the situation seem less dire.  The ones who are saddled with the major impairments deserve better than this.  Characterizing talking realistically as dehumanizing is way out of line.

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