On this year’s World Autism Day, let’s shift the focus away from awareness to acceptance

Awareness is fine, argues Julie Ward, but without acceptance it risks being contaminated by ableist paternalism
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By Julie Ward

Julie Ward is a former MEP (UK, S&D) who was an active member of the parliament’s Disability Intergroup

31 Mar 2022

In 2007, 2 April was denoted World Autism Awareness Day by the UN, aiming to bring together individual autism organisations from 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. While the “Nothing About Us Without Us” campaign has entered the mainstream, successfully challenging policymakers, 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. 

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

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 neurodivergent 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 held out hope 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 or anti-cure movement is not new, having been in existence since the late 1980s with the founding of the Autism Network International (ANI) 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 Martijn Dekker launched an e-list called Independent Living on the Autism Spectrum, which also welcomed those with such conditions as ADHD, dyslexia and dyscalculia. American writer Harvey Blume was a member of the list and described it as embracing “neurological pluralism”. The term "neurodiversity" 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, which was established to monitor media outlets for negative treatment of autistics but also created a website with support and advice services as well as a chat-room. 

The concept of awareness has shades of ableist paternalism much contested by the neurodivergent community, who have for too long been ignored and are now taking control and demanding a different approach

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. 

Over the years the growth of the internet has provided more opportunities for autistic individuals to connect and organise. Considering geographical distance, the 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? First, 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.  

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Health Justice
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