Autism Awareness/Acceptance Day 2021: Myths Debunked and Futures Envisioned
Officially Friday, April 2nd was ‘Autism Awareness Day’ so I will start with some thoughts about what autism is and what it isn’t. While I think most people have at least heard of autism, and many of us have autistic people in our lives, there are still a lot of gaps in people’s knowledge about autism. This is compounded by the definition of autism changing over time. The prevalence of myths and misunderstandings about autism results in many autistic people going undiagnosed (especially girls and women). My personal story includes over a decade of gradually arriving at the realisation that I was autistic, a journey made longer and more challenging due to my own misunderstandings.
For many years autism was associated only with people who were incapable of living independent lives, many of whom were institutionalised, and many of whom also scored poorly on IQ tests (more about that later). Many of these boys (for years autism was thought to only occur in boys), showed ‘spikes’ of strong intellectual ability. The seeming conflict between inability to care for oneself and having flashes of genius was the focus of much early autism research.
This stigma of dependence, juxtaposed with incongruous abilities, is still many people’s association with autism. Sadly this stigma is reinforced by the loudest (or at least most heard) voices in the autism world: the parents of autistic children with high support needs (please don’t speak about ‘high-functioning’ or ‘low-functioning’ for more on that here’s some words from Princess Aspien (aka Chloe Hayden)). These parents speak of seeking both causes and cures; and they seek to distance themselves and their children from autism by advocating ‘person-first’ language. All of this: the stigma, the need to understand what makes us different, the concept of a cure, and the concept that ‘I’ and ‘autism’ are separable, are widely rejected by those of us who are autistic and able to articulate our own perspective. I am not a ‘person with autism’ I am an autistic person. I am not afflicted with autism. I do not suffer from autism. Autism isn’t something that happened to me, it is who I am.
As awareness of Autism has grown, people’s understanding has expanded beyond thinking of boys in a mental hospital. Many people are aware that there are seemingly infinite ways that autism can present, and lots of people have heard the term ‘spectrum’ used in relation to autism. This, too, is an area of significant misunderstanding. There is no ‘autism spectrum’ which people are ‘on.’ One can’t be ‘spectrumy.’ For years ‘on the spectrum’ has been used as a short-hand for dismissing people who are deemed ‘too different’. More harmful, when people hear ‘spectrum’ they imagine a neat two-dimensional line where they themselves sit comfortably ‘above’ those ‘poor unfortunates’ who are autistic. The truth is that ‘spectrum’ is actually psychologist argot for a condition which presents in a lot of different ways. So ‘spectrum’ isn’t a noun describing where you can find autistic people, it is an adjective describing autism itself. Another way of looking at this is to think of the autism spectrum as being N-dimensional.
I promised I would return to the question of IQ tests. Understanding this is critical to the conversation about integrating autistic people into the workplace. In broad terms, the way that IQ tests work is that they measure a set of skills, and then cross-correlate these skills into an aggregate score. An assumption of this approach is that people are relatively ‘smooth’ in their intelligence: someone who is good at symbolic logic will be good at pictorial logic. Poor performance in one area will nullify strong performance in another. The problem is that autistic people tend to be ‘spiky’ rather than smooth. You can actually see this on MRI scans: autistic brains have shown both some of the lowest concentrations of neurons, and some of the highest! The result is that autistic people often score low on IQ tests.
In the workplace this ‘spikiness’ can pose significant challenges. Similar to an IQ test, most employers have a set of skills which they want in a specific position, and those roles are defined around how skills cluster amidst the broader (largely non-autistic) population. People are more likely to be held back, or not hired, due to areas of weakness than they are to be advanced due to selective strengths. The assumption that gaps in abilities is an important signal for weeding out underperformers is deeply ingrained throughout Western civilisation and is not (yet) recognised as an unconscious bias against the neurodiverse. If you draw up a job description as a list of skills, and seek someone who is above some bar in all of those skills, you will inevitably miss the person who is really strong in some areas, and weak in others.
To move beyond Autism Awareness into Autism Acceptance, workplaces need to understand how profoundly different autistic people are, and the importance of creating ‘spiky’ roles where we can lead in some skills, and collaborate with others to smooth over our weak points. Similarly, schools need to think beyond a model of trying to help autistic students be more like their non-autistic peers, and instead help them to recognise their weaknesses and cultivate their strengths.