People have been calling April ‘Autism Awareness Month’ since 1970, and the United Nations declared 2 April ‘Autism Awareness Day’ in 2008. Until last year, the National Autistic Society also marked Autism Awareness/Acceptance Week, usually starting in late March – dragging it out even longer.
Speaking as an autistic person, I am tired.
Understanding autism and listening to autistic voices
It’s not that awareness of autism is bad, and acceptance is basically good, in the same way that tolerance is good: it’s nice not to be rejected, but maybe we could aim a little higher.
What autistic people are most in need of is understanding and support. World Autism Understanding Month would be something I could get behind.
The fact that autism is still so little understood, despite a half-century of Autism Awareness, has a lot to do with who gets listened to about autism. Historically, non-autistic people have dominated conversations about autism: looking from the outside in, frequently misunderstanding what they see, and labelling behaviours they don’t like as ‘disordered’.
Recent years have seen a dramatic shift in public discourse around autism: autistic people are finally being listened to, and many leading autism researchers now speak openly about how much they have learnt this way.
Neurodiversity paradigm
At the heart of this shift is the concept of neurodiversity. Much misunderstood, the neurodiversity paradigm simply suggests that cognition naturally varies a good deal between people, and that this is healthy for humankind. By extension, we should be cautious about assuming that any processing difference is pathological. However, this doesn’t suggest that things are easy for neurodivergent people – those whose brains don’t match up with society’s norms. In this society, which was not built for us, autistic people are generally disabled. We are likely to struggle with tasks that others find trivial, and we often experience sensory distress and overwhelm. Many suffer social isolation.
What the neurodiversity perspective suggests is that pathology is not the right lens for understanding these problems: they are not symptoms of autism, and they are largely avoidable – but not by fixing autistic people.
While we may find some things impossibly hard, we often find other things much easier than most people do; maybe we could focus on them. Sensory distress can be avoided by making spaces accessible (avoiding bright lights, loud noise, strong scents, and so on) or mitigated with the help of tools like tinted glasses and headphones. Sensory sensitivity also has advantages, both practically and in terms of the joy it can bring. Social isolation is a product of exclusion and stigma, and is mainly a problem for those who haven’t found the right people to connect with. That often means other neurodivergent people, but it could also be those with shared interests, or who have experience of being an outsider for other reasons.
The traditional, medicalised view of autism leads people to overlook any possible advantages and look in the wrong places for possible solutions to problems. It is no wonder that so many autistic people (and families, and professionals) are sick of it.
Where we are with autism now
It has been wonderful to see scientists, charities, and governments start to catch up with what autistic people have been telling them since the 1990s: some 30% of scientific papers now use ‘neuro-affirming’ language, a figure that is growing all the time, with many scientists acknowledging an ongoing paradigm shift. Many NHS materials aim to be neuro-affirming, too; the General Teaching Council of Scotland has a Professional Guide to Neurodiversity for teachers, along with separate neuro-affirming guides to autism, ADHD and dyslexia. It seems clear that we have reached a tipping point.
However, we still have a long way to go; many myths, like the idea that autistic people lack empathy, are still prevalent. Wikipedia is about a decade behind in its autism coverage. Many health and education professionals are similarly out of date. Behaviour modification approaches such as PBS and ABA are still promoted heavily, despite long-standing opposition from autistic people.
Autism Acceptance Month still feels like a slog for many autistic people – a month of hearing endless bad takes from non-autistic people, sweetened by the occasional helpful contribution from people who are actually autistic themselves. It doesn’t have to be like this – we can all play a part in shifting the narrative and uplifting autistic voices. In the meantime, please spare a thought for your autistic friends and family members this April. Too much ‘awareness’ can be truly exhausting.
Further reading:
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