Greetings Earthlings! 🙂
This week I’d like to discuss the term “high functioning autism”.
You may be surprised to hear that the term “high functioning” is quite controversial within the autistic community. In fact a recent study strongly supports discarding the term “high functioning autism” completely.
So why is the term controversial?
Firstly, let’s quickly remind ourselves of what constitutes high functioning autism:
High functioning autism (HFA) is a term used to describe autists with strong language skills and an IQ of over 70 ( i.e they do not have an intellectual disability).
Herein lies the problem- the term uses IQ as a predictor of functionality and does not take into account the day to day struggles of the average autist. An autist deemed to be low functioning may not encounter challenges in their daily life, but may struggle academically. Similarly, an autist may excel academically, but something so trivial as writing an email may prove challenging. In many of the films I’ve reviewed, the autistic character is described as high functioning, but yet they are incapable of living an independent life.
Moreover, functioning levels often fluctuate from year to year, improving or dis-improving depending on circumstances and levels of support- there’s even evidence to suggest that, as with many things, autism can get worse with age! Levels can even fluctuate day to day where something as simple as lack of sleep can impact upon functioning. As a result of this, many autists deemed “high functioning” do not get adequate support for their needs.
Researchers have found in a recent study that there is a serious gap between an autists cognitive functioning (IQ) and their adaptive behaviours (i.e. their ability to adapt to their environment). The average results show that autists with higher IQs scored 28 points lower than their IQ in adaptive behaviour scales, suggesting that IQ is a weak predictor of daily functioning.
You can read more about the study here:
Large study supports discarding the term ‘high-functioning autism’
Technically speaking, within the medical community the term “high functioning” is considered an informal term and is not in itself a definitive diagnosis, further fueling efforts to banish it.
However, I personally feel that removing the term could be problematic. In my case, both my IQ and functional abilities are high- I breezed through college, have an active social life, hold a job and live independently. To say that I am simply autistic to a person who doesn’t know me very well can skew their expectations and perceptions of me- especially in the workforce. Granted, public understanding of the spectrum is improving, but still the ‘a’ word can place you into a predefined box in people’s minds.
I worry that our move towards a more generalized view of the spectrum may effectively disable the truly high functioning. Recall how autism is divided into levels. Asperger’s syndrome has been swallowed up by level 1 autism, where autists have noticeable issues with socializing and communication skills. This level is characterized by:
- decreased interest in social interactions or activities
- capable of social engagement but may struggle with conversational give-and-take
- difficulty with planning and organizing
- struggles with initiating social interactions, such as talking to a person
- obvious signs of communication difficulty
- trouble adapting to changes in routine or behavior
where autists are vaguely classed as “requiring support”.
On paper, I fall under this definition, but it does not describe me as well as Asperger’s syndrome or the term ‘high functioning’. This definition paints an entirely different picture for people to that of my reality (for starters the only support I require consists mainly of a good bra, sugar, a hug and a box of tissues for unexpected meltdowns 😂). Were I to have been diagnosed earlier in life, this definition may well have held me back.
For many autists, indeed the term high functioning can be tricky, but I do not believe it should be abandoned completely. Yes, it is time to reevaluate our classification of autism to better define functionality levels across the entire spectrum, but perhaps there’s a better way to go about it.
Hope you enjoyed this post dear Earthlings! 😀
Have a lovely weekend!
Aoife
A Is For Aoife Not Autism 
This was a very interesting read. I have always kind of been an advocate for minorities of all sorts and I met a lot of autists on Twitter who dislike the functionality box. Considering that Hans Asperger was one of the most controversial scientists from Austria (and there is a whole lot of those), I encourage you to look into Asperger’s as a definition as I would love to read your thoughts on the background of Asperger’s and the man who coined it (and quickly abandoned the term itself because he liked autism better, afaik). I myself think that autism should always be enough of a description and if people are really lucky, they can ask “so what level of support do you need?” and they might even get an answer.
In my experience, people misunderstood everything I ever tried to explain about autism unless they were on the spectrum themselves, so in their world, we’re all seemingly the same as someone with T21 or epilepsy. But then again, I am often very angry at the world and negative experience has clouded my view.
Thank you for this informative post!
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