It’s near on 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 in many different ways, you can hear them applied to people in both negative ways and positive ways. You can hear them used as a weapon to silence or 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.
Those on the higher-functioning end of the spectrum.
And so the list could go on. I’ll stop the list there before I get myself too worked up in a combination of sadness and anger at the ignorance that is perpetuated at such statements. It may sound harsh but it is true these statements betray a lack of insight and understanding of autism and autistic people.
Firstly there is no such thing as High Functioning Autism. It is not, and to the best of my knowledge never has 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 are variously descriptive of the severity of traits and behaviours and support needed.
To the best of my understanding the terms High Functioning Autism originated with Leo Kanner, was never a diagnostic term but a term which he described as pertaining to people diagnosed with autism who tested with a high IQ result. You may notice is 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 particular areas of cognition.
Just as High Functioning autism doesn’t exist, neither does low functioning. The reality is nobody really knows what they mean but everyone has some preconceived concept of what it might mean. Because of these preconceptions, 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 can simply imply an ability or not to speak with mouth parts as if the ability to speak is actually an indicator of a person’s ability to function in life.
All of these misconceptions, preconceptions, and erroneous understandings do not cater for the reality that functioning is a fluctuating business. I think this is true for all people, I think this is heightened for neurodivergent people, but nevertheless it is true for all people I believe.
Anecdotal evidence for this is a quick scan of a social-media feed to see the I can’t adult today for example or perhaps the oh no I have to people today. These are snippets of the reality that some days, some moments, some months, some weeks etc people are better able to function and manage the things that are required to meet the responsibilities of their daily being.
I think for neurotypical people this can be the difference between the level of effort required to get through the day. For neurodivergent people it can be this 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 functioning things 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 shut down for extended periods of time.
The really important thing to note is that the sensory and social environments have a massive impact on these fluctuations. These, of course, can not be accurately predicted and accounted for. Of course, there are some aspects that can be, we can know to certain extent that as we navigate that shopping centre there will be particular issues at hand. That’s all very well but there are so many aspects that are not able to be predicted and accounted for, like that moment your vestibular and proprioceptive security is majorly compromised by the movement of people in and out of your space as you find yourself in an unexpected large group of 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 they are a serious issue for consideration.
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.
F is for Fluctuating Functioning.