As we all know, autism is a spectrum disorder meaning that there is a wide range of abilities and difficulties that sit under that umbrella. Recently there has been a suggestion that a new category of autism called “profound autism” is needed to differentiate between so-called “high functioning” autistics and individuals with greater support needs.
This suggestion is bound up with a view that when people “with high functioning autism” say they are autistic, it seems like they⏤we⏤are indicating that autism is just having a “quirky personality” or having a propensity to be a bit “flaky” on Tik-tok.
The knock-on implication of this is that we are taking up space and resources we just don’t need. However, this is a myth, and somewhat upsetting: rates of poor mental health and even suicide are much greater for the autistic population as a whole than they are for neurotypicals even if we might not show the signs.
But I feel the need to prefix this blog with a disclaimer that yes I know that autism varies widely in how it is experienced and there are vast differences between the levels of support people need to navigate day-to-day life and that this has an effect on families. This piece is not meant to diminish that.
My point is not to compare experiences but rather to highlight that being on the “other end” of the spectrum (and yes I know the spectrum is not linear) is no picnic.
Here are five things everyone should know about “high-functioning” autism:
- Autistic people who are labelled “high-functioning” commonly suffer from a range of mental health problems (such as anxiety, depression, OCD) to a level which meets the threshold for a clinical diagnosis. These problems tend to be chronic, and for many anxiety is our day-to-day experience. My personal view is that this is linked to masking⏤because we can pass as neurotypical we feel a pressure to, and we minimise our distress, and over the long-term, this can lead to burnout and breakdown.
- This is linked to the above, but is so striking I think it warrants a point of its own. There is research which suggests up to 66% of autistic adults have considered suicide, and up to 35% had planned or attempted suicide (Hedley, D., & Uljarević, M. 2018), with the highest risk seen in autistic women, and autistic people without a co-occurring intellectual disability. That is, people who would not be considered “profoundly autistic” under the proposed new category.
- Autism has a very ‘spiky’ profile which means that while someone may be “high functioning” in one area (e.g. doing their main job role) they can also really struggle with seemingly “simple tasks” such as booking leave or finding the cafeteria. Because the things we can’t do often seem “easy” compared to the ones we can, we may not get any help or support. We also may feel embarrassed to ask for support.
- Meltdowns and shutdowns can, and do, happen to any autistic regardless of their general support needs. This can include times when we are unable to speak our words. We need to know it’s OK to take time out at any time so we can manage, and not feel forced to stagger on.
- Because autism is an invisible disability we often gaslight ourselves and persuade ourselves that we can tolerate more than we able to stay well. This is why the suggestion that only profound autism counts has hit many of us so hard and feels so deeply invalidating.
Although support needs differ, we are all autistic