Whether attached to anxiety, depression, ADHD or Autism, the phrase “high functioning” is a label which; for years, has served as a trophy bestowed upon those living with a diagnosis whilst being able to appear “normal” to the outside world. Whenever I disclose to someone for the first time that I am both Autistic & have ADHD, I am often met with one of two responses: a) “You don’t look Autistic!” or b) “You’re so high functioning! I never would’ve guessed”! While the intention behind these statements is often not malicious, these statements are far from complimentary. In actuality, labels like ‘high and low functioning’ do far more harm than good and can invalidate the myriad of experiences that an individual living with a diagnosis may find challenging in everyday life. But these arbitrary labels are not just used within everyday social circles by misguided friends or family. Often, they are still used within therapeutic spaces. While these labels can be harmful when attached to any mental health or neurological diagnosis; let’s dive deeper into the application of ‘high vs low functioning’ as it relates specifically to Autism and unpack why we should be leaving these terms outside of our therapy rooms once and for all. 

In order to examine the weight of these labels in their current context, let’s unpack some of the history around them. The descriptor of ‘high functioning’ as it pertains to Autism was first used in the 1980’s to denote individuals living with the diagnosis who either possessed an IQ of seventy or above, or lived without an intellectual disability (Chalwa, 2019). Originally, the purpose of the ‘high functioning’ label was to differentiate between Autistic individuals who may require additional provisions to better support specific intellectual needs from those who did not. Interestingly, the label was never used as a diagnostic term nor was it ever utilised to assess overall functional adaptability. However, over time the ‘high functioning’ descriptor has become synonymous with greater expectation of adaptive functional skills in everyday life. Meaning that if an Autistic individual is remarked as being high functioning, it can be assured that the individual in question has the capacity to function productively in everyday situations with little to no difficulty. Any difficulties that are experienced are often assumed to be handled with ease and with minimal impact upon the individual’s biopsychosocial wellbeing, right? Well, not exactly.

A recent Australian study reviewed data from 2,225 Autistic children and young people aged 1-18 and found that those who had an intellectual disability; deemed ‘low functioning’, had a much smaller gap between their assessed functional skills and their reported IQ (Alvares et al., 2020). Furthermore; individuals who possessed an average or above IQ and were therefore deemed “high functioning”, demonstrated a capacity for functional skills that was well below what would be expected of them based on their reported IQ (Alvares et al., 2020). So, what does this mean? Well, these findings challenge the theory that IQ is an indication of functional adaptability in daily life and paints a picture of just how the myth of ‘high vs low functioning’ Autism not only leads to false expectations of functional skills, but may also hinder individuals from accessing services and adaptive supports at all.  

The study also provides further evidence that fortifies what much of the global Autistic community has already been saying for years: to cease the ‘high functioning’ and ‘low functioning’ labels used by clinicians and researchers alike, and start viewing Autism as the diversely vast pool of experiences that it is. IQ is simply inadequate as an indication of one’s abilities or disabilities in areas like communication (both verbal and non-verbal), social interaction/coping, sensory processing, or independent living skills. What’s more, many Autistic individuals become skilled in the art of masking (but that’s a blog for another time). So what you may think is high functioning is actually years of mimicry at work to mask the fact that we are Autistic at all. Some of us were diagnosed later in life because of that masking. Some of us have learned to mask because it is not safe to do otherwise. And all that masking is incredibly exhausting–because it does not come naturally to us. Usually, those well-intentioned yet politely backhanded compliments of “you’re so high functioning!” are speaking exclusively to an Autistic person’s ability to blend in with societally accepted normative behaviours. “You’re so high functioning” overlooks all of the challenges we may be overcoming, even in that moment, to just smile and say “ah..thanks…?” because we know you’re only trying to be nice and we simply don’t have the energy to educate otherwise because our social battery is running dangerously low and our sensory sensitivities are skyrocketing rapidly as a result.

Putting all of this into a therapeutic context, it is important to recognise that Autism is Autism, period. And if you have met or worked with one Autistic client, you have certainly not met them all. The spectrum is far wider and deeper than you can imagine, and it is imperative to remain curious as to what your client’s unique experience is like. Figure out what challenges may present themselves in session and collaborate on how you can work around these together. This may look like asking about any sensory issues and how these can be mitigated. As an example, sometimes I use The Feelings Wheel as a simple check in tool with clients (Wilcox, 1982). The original wheel image uses bright, contrasting colours to highlight each emotional state. This can present significant overwhelm for a client with visual processing sensitivities, so I have another wheel that uses analogous colours ranging from soft green to purple hues that can be easier for the eye to take in. 

Fostering a client’s freedom to unmask during sessions is another way to provide support that actively works to dismantle harmful stereotypes perpetuated by ‘high vs low functioning’ labels. I often encourage neurodiverse clients to engage in stimming behaviours as often as they like in our sessions. I also make it known that I will sometimes engage with stimming behaviours during sessions too (I can say with great certainty that I would not be able to sit still for very long without my fidget cube nearby, and am no stranger to gleefully flapping my hands when I a client shares an experience of joy with me). Currently I am in the process of cultivating a collection of diverse toys and tools that can be accessed by clients during sessions specifically to encourage stimming. 

An empowered, authentic self can be decimated by shame. And there is nothing shameful about being Autistic. The purpose of the ‘high functioning’ myth serves only to protect the comfort of the perspective that if we all go about life in the same way, this way must be normal and correct. But we therapists know that the most profound growth occurs when we sit with discomfort and challenge ‘normal’. So, let’s ditch the functionality labels, step out of the comfort they used to protect, and support our clients in finding their own unique ‘normal’.

Sources & Additional Reading: 

Alvares, G. A., Bebbington, K., Cleary, D., Evans, K., Glasson, E. J., Maybery, M. T…Whitehouse, A. J. (2020). The misnomer of ‘high functioning autism’: Intelligence is an imprecise predictor of functional abilities at diagnosis. Autism: the international journal of research and practice, 24(1), 221–232. https://doi.org/10.1177/1362361319852831

Chalwa, D.S. (2019). Large study supports discarding the term ‘high-functioning autism’. Retrieved from https://www.spectrumnews.org/news/large-study-supports-discarding-term-high-functioning-autism/#:~:text=Researchers%20coined%20the%20term%20’high,(an%20IQ%20below%2070).

Williams, K. (2019). The Fallacy of Functioning Labels. Retrieved from https://www.ncmh.info/2019/04/04/fallacy-functioning-labels/

Willcox, G. (1982). The Feeling Wheel: A Tool for Expanding Awareness of Emotions and Increasing Spontaneity and Intimacy. Transactional Analysis Journal, 12(4), 274–276. https://doi.org/10.1177/036215378201200411

Written by Dana Swann.

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