The Issue with Autism Awareness Week: Misrepresenting Autistic People, Perpetuating Stereotypes


I N S I G H T


Tahia Afra Jannati


Autism awareness, which once was a relatively rare phenomenon, has now become increasingly common over the past decade. The autism awareness movement is most commonly characterised by non-autistic people engaging in public hand wringing about autism and/or claiming to feel inspired by those who are tragically touched by neurodevelopmental issues.

Increased awareness about autism spectrum disorder would be an excellent first step towards the kind of awareness autistic people need, as they could benefit from the general public having a greater understanding of what their lives are like, and maybe even some genuine acceptance of those lives in whatever form they take. However, the kind of autism awareness that is currently celebrated was never actually made with anyone on the spectrum in mind, at all.

Although it seems Autism Awareness Day/Week/Month should be all about autistic people, it’s actually not—they are almost always invisible in conversations about their own disability. Sick of explaining why many autistic people wouldn’t want a cure even if one were available, and seeing instances of non-autistic people participating and in many cases, leading fundraising events, autistic adults and activists are now calling for ‘Autism awareness’ awareness. 

Awareness is not the goal anymore, but acceptance is.

The word “autism” used in the headlines can only make people aware of its existence, and that’s the first but a very low step. The real concern is the large number of autistic people who are included in the general institutions of society, social circle, or even involved in matters that exclusively concern them. Conquering this step requires genuine effort and is much more important than wearing blue or “lighting it up blue” (a token of support for Autism Speaks).

Autistic people complain that public discussion of autism has been dominated by non-autistic people for a long period. They argue that neurotypicals tend to impose their own irrelevant knowledge and description of the mainstream narrative, ignoring the voices of the autistic community. Meanwhile, the authentic voices and opinions of autistic people have been ignored and overlooked. Autistic people reject the notion about puzzle pieces, which are used as the symbol for autism. To autistic people, the puzzle piece represents a negative perspective about autism as if they were missing a piece or they need solving. The second issue for autistic people is that the puzzle piece also represents viewing them as ‘puzzling’ or a ‘mystery’. Autistic people prefer using a rainbow infinity symbol or a gold infinity symbol — which are appropriately connected to the neurodiversity perspective and preaches acceptance.

The autistic community still faces the problem of labelling. There is a saying, “If you’ve met one person with autism, you’ve met ONE person with autism.” Each autistic person’s experiences are different from the ones of another person, and can’t be projected onto every autistic individual just because they share a label.

Once deemed a tragic and terrible disease and seen as a curse to families is still ridden with old stereotypes. Autistic people are seen as either superheroes with rare and special abilities, or simply tragic. But there is no such thing as “high functioning” or “low functioning” autism. The “high functioning” label prevents autistic people from qualifying for adequate facilities, and the “low functioning” label prevents autistic people from being given proper opportunities well suited for their needs. Also, the idea of “recovery” has been deeply damaging to the Autistic community because there is no cure for autism. Anti-vaxxers need to stop using autism as a debating tool to justify their illogical claims and conspiracy theories about how vaccination leads to autism because it doesn’t; they shouldn’t be allowed to bring back the culture of ignorance.

Majority of people in the autistic community prefer identity-first language to person-first language. Saying ‘someone with Autism’ infers as if Autism is something people have, indicating that it is some sort of disease or something negative that people can get rid of. This gives a false sense of negativity to Autism when it shouldn’t be seen as such.

Autism is not a trait that should be corrected, it is simply an identity.

The lack of inclusion of autistic individuals in the awareness movement severely hinders the policy making process surrounding healthcare and community integration. The disconnection between the neurodiversity narrative popular in general awareness movement and practical experiences negatively affects the assimilation of the neurodivergent group to the general society. Several vocal autistic people and parents have complained that the Autism awareness movement consists of mostly individuals who are less impaired and do not represent people with severe problems. Most autistic advocates argue that autism conferences and campaigns do not represent most ND adults or children and are not either well-experienced or well-appointed to speak for or represent the autistic community.     

The neurodiversity movement celebrates autism as a gift that is an integral part of one’s identity. Neurodiversity advocates favours the social model that blames the problems faced by autistic people on systematic ‘ableist’ discrimination. But in recent times, the neurodiversity movement has been facing backlash as it has failed its promise to make the voices of autistics heard. There is a possibility of neurodiversity advocates romanticising autism which can later on result in other conditions that can be debilitating and life-threatening. Their efforts to legitimise self-diagnosis of autism is debatable.

“Autism Speaks”, one of the most internationally recognised autism groups, has been involved in multiple scandals over the years for its highly problematic approaches. Several autistic people pointed out that not one member of the Board of Directors for Autism Speaks has ASD and only three autistic individuals in Autism Speaks’ 15-year-long history have served in administrative roles. The kind of autism awareness Autism Speaks promotes treats autistic people as little more than instruments in its campaigns. The prominent charity’s negative rhetoric about how autism is a disease and must be stopped misrepresents a complex condition. This misrepresentation reduces neurodivergence to damaged and passive human beings who only bring suffering to everyone around them, when in fact they only require treatments and accommodations unique to their circumstances.

Autism is just a different neurotype. Acceptance and listening to the voices of this neurodiverse group is what the community needs the most. Autistic people should not be under the damaging pressure of recovering or pretending to be something or someone they are not. Autism is not a spectrum, but a natural part of the human condition and every autistic person has different experiences and struggles. Neurotypical people need to be more aware, at least to have a general sense of what is involved. Only individuals from the autistic community should be involved in the campaigns about Autism awareness. If the world is more accepting of this neurodiverse community and if the world is more accommodating for them, only then can we improve their quality of life after decades of being marginalised and victimised. 

 


Tahia finds solace in reading; she wholeheartedly believes she is similar to Jane Austen heroines. She wants to build a life worth living and has a list of countries she wants to visit. She is an optimist but an overthinker; ambitious but a procrastinator.

 

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