2 April was denoted World Autism Awareness Day by the UN in 2007, aiming to bring individual autism organisations together all around the world to promote progress on issues such as research, diagnoses, treatment, and acceptance of those affected by autism. It remains one of only seven official health-specific UN Days. However, increasing numbers of rights activists are challenging the very basis of the designation as a ‘health’ issue which they say feeds into perceived ‘ableism’ against autistic people. It is therefore time to further shift the focus away from ‘awareness’ to ‘acceptance’ in line with the wishes of those with lived experience of autism.
Being in control of the narrative about oneself has been an important aspect of disability politics for some time. Whilst the ‘nothing about us without us’ campaign has entered the mainstream, successfully challenging policy makers, service providers and the charity sector to include the disability community in all decision-making, full involvement of people with autism has not been achieved. The result of this failure is a continuation of the medical model of disability rather than the social model, a situation which dehumanises the individual person and runs counter to the notion of empowerment.
So why is ‘awareness’ as a concept such a problem? Surely we should wish for more people to be educated and aware of the specifics regarding autism and how it manifests in day to day situations? However, the concept of awareness has shades of ableist paternalism much contested by the neuro-divergent community who have for too long been ignored and are now taking control and demanding a different approach.
One visible indication of this change in focus is the rejection of the puzzle piece as a symbol for autism. This image was initially promoted by the National Autistic Society of the UK in 1963. The charity’s board believed that autism was a puzzling disease that needed to be cured, and used the symbol in conjunction with an image of a weeping child. The charity promoted a culture of pity and hoped for treatments, even a cure maybe, straying dangerously into the area of eugenics. This has had the effect of stigmatising people with autism rather than integrating them into society on their own terms where they could aspire to enjoy their rights alongside others.
The autism rights anti-cure movement is not new, having been in existence since the late 1980s with the founding of the Autism Network International by the American Jim Sinclair. ANI organised conferences or ‘autreats’ and produced newsletters giving autistic people a dedicated media outlet for the first time. The movement spread to countries like the UK, Sweden and the Netherlands. The Dutch autistic tech geek Martjin Dekker launched an e-list called “Independent Living on the Autism Spectrum” which also welcomed those with “cousin” conditions, such as ADHD, dyslexia, and dyscalculia. American writer Harvey Blume was a member of the list and described it as embracing “neurological pluralism”. The term “nerodiversity” was subsequently used by the Australian academic (Judith Singer) in 1998.
The 21st century has seen the rise of self-advocacy and autistic pride, largely initiated by Aspies For Freedom who set up to monitor media outlets for negative treatment of autistics creating a website with support and advice services as well as a chat-room –
The autism rights movement, or autistic acceptance movement, views autism as a result of natural variations in the human brain rather than a “disease” to be cured, believing that autism should be accommodated like any other condition, in line with the social model of disability. This perspective runs counter to some other views: that autism is a genetic defect and should be addressed by targeting the autism gene(s), or is caused by environmental factors (including fringe theories such as the debunked and false narrative that autism is caused by vaccines).
The rights movement advocates for greater acceptance of autistic behaviours, for services that focus on improving quality of life rather than on imitating the behaviours of neurotypical (non-autistic) peers, and for UN recognition of the autistic community as a minority group.
Connecting and organising
Over the years the growth of the internet has provided more opportunities for autistic individuals to connect, and organise. Considering geographical distance, communication and speech patterns of autistic individuals, and the domination of neurotypical professionals and family members in established autism organizations, online platforms offer an invaluable space for members of the movement to communicate, campaign and challenge the establishment. It is worth noting that if autism was eliminated we would lose a large proportion of our scientists, musicians, artists and mathematicians. World Autism Day should therefore be an annual celebration of neurodivergence.
So what should you do on 2 April to support the autistic community? Firstly ditch the puzzle piece symbol and adopt the rainbow infinity pin-badge first promoted by Aspies. This symbol represents the diversity of the autism spectrum as well as the greater neurodiversity movement and promotes an intersectional approach which recognises the complex identities of non-binary people with autism as well as a wide range of ethnicities. Secondly talk about ‘Autism Acceptance Day’ or ‘Autism Awareness AND Acceptance Day’ rather than ‘Autism Awareness Day’. 2 April should be an annual celebration of autistic people rather than a platform promoting pathologisation and pity. Therefore, listen to the stories of neurodiverse individuals and amplify them using your networks of influence.
Post-script: The humanitarian crisis in war-torn Ukraine is particularly concerning for people with disabilities, especially those with hidden disabilities such as autism. Autism Europe has outlined specific risks and issued a call for the protection of Ukrainian autistic people which should be read by all those working on the ground in Ukraine or in countries receiving refugees.