Why the High-Low Labels are So Wrong!

High Low Functioning Labels are Wrong

By Rochelle Johnson

It’s nearly impossible to avoid hearing or reading the words high functioning autism/autistic. Regardless of their validity or inadequacy at actually describing anything, you will hear them in the autism world. You can hear them applied to people in both negative and positive ways. You can hear them used as a weapon to silence or as a shield of avoidance.

“But you’re so high functioning.”

“They must be high functioning.”

“But you’re much more high functioning than my child.”

“You don’t look autistic.”

And so the list could go on. I’ll stop there before I get myself too worked up in a combination of sadness and anger at the ignorance that is perpetuated by such statements. It may sound harsh but it is true these statements betray a lack of insight and understanding of autism and autistic people.

There is no such thing as high functioning autism.

It is not, and to the best of my knowledge, has never been present in the diagnostic criteria contained in any version of the Diagnostic and Statistical Manual (DSM). The current iteration of the DSM, which is DSM5, describes autism as “ASD – Autism Spectrum Disorder.” It breaks this down into three levels which describe the severity of traits, behaviours and support needed.

It is my understanding the term high functioning autism originated with Leo Kanner who used it to describe people diagnosed with autism who tested with a high IQ result. You may notice I said tested with a high IQ, not have a high IQ.  The IQ test is a standardised test, however, it is highly enculturated and saturated in its bias for particular skills in areas of cognition.

Low functioning doesn’t exist either.

The reality is nobody really knows what they mean but everyone has some preconceived concept of what it might mean. Because of this, there are assumptions made about autistic people based on that flawed label and what they can and can’t achieve in life. For some, the term high or low implies the ability to- or not-to-speak with mouth parts, as if speaking is an actual an indicator of a person’s ability to function in life.

Functioning fluctuates.

All of these misconceptions and erroneous understandings do not allow for the fact that functioning fluctuates. I think this is true for all people but heightened for those who are neurodivergent.

Do a quick scan of a social media feed to see that that on some days (or some moments, some months, some weeks) people have times they can or can’t manage their daily responsibilities. For neurotypical people this can be the difference between the level of effort required to get through the day. It can be the same for neurodivergent people too, but also it can be much more profound, such as:

  • The difference between having or not having words.
  • The difference between being able to self-care or not.
  • To eat or not to eat.
  • To completing a productive day or needing to hibernate under a weighted blanket, or rock in a corner, or flap and jig the day away.
  • Of completing a task or totally shutting down for an unknown period of time.
Yes, these fluctuating functions are a reality.

When a neurodivergent person says they can’t “people” today, it’s actually a thing. A thing that they really, really mean. A thing that could be the difference between total withdrawal and shutting down for extended periods of time.

The important thing to note is that the sensory and social environments have a massive impact on these fluctuations. These, of course, cannot be accurately predicted and accounted for. Of course, there are some aspects we can predict. We know when we navigate a shopping centre we might have some sensory issues. That’s all very well but there are so many aspects that you can’t account for, like that moment your vestibular and proprioceptive security is compromised when unexpectedly surrounded by the movement of large groups people.

Fluctuations in functioning come upon us slowly and quickly, with and without warning. They can build up gradually or they can come in like a bomb blast. They are real and serious. But please don’t call me high-functioning, please don’t call me low-functioning. Please don’t call me anything functioning.

I am autistic. Period. No further descriptors required.

 

Richard Johnson, Penfriend Project

Rochelle Proud Autistic Living

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About Jodi Murphy

I am the founder of Geek Club Books, autism storytelling through mobile apps for awareness, acceptance and understanding. My mission is to use the art of storytelling and technology to entertain and educate for the social good. I am a 'positive' autism advocate, mother of an awesome adult on the autism spectrum, lifestyle journalist, and marketing specialist.

Comments

  1. Thank you for this. I’m the mother of a son with autism and a school psychologist, so I know a lot about autism, but you keep teaching me more!
    http://www.beyondrainman.com

    • Thanks for taking the time to read Anne.
      There is always more to learn for all of us. That moment we think we have it all sorted is the moment our ignorance is most effectively displayed…

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