Autism and the importance of self advocacy

Amy Field

CW: ableism

When you think of the word Autism, what do you think? 

In all honesty, if you thought of a young white boy, perhaps about 5 or 6 years old, screaming in a supermarket, I don’t blame you. It’s an inevitable consequence of the conversation around autism that has gone on in the last few years, which is often dominated by parents and littered with misinformation. I’m sure everyone is aware of the vaccine scares (because an autistic child is apparently worse than a dead child) as well as more obscure theories about gluten, sugar or any variety of ‘toxin’…frankly the list goes on. So, let’s get the record straight.

Autism is a neurotype, although it is chronically under-diagnosed in women and girls, it occurs in all genders and amongst all ethnic groups. And yes, autistic adults exist, contrary to media depictions. It is not caused by vaccines, food, or too much TV, in fact it’s not actually known what causes it – and that’s okay! This is because there is nothing bad about being autistic, it is simply a difference. That’s not to say that we are all super geniuses like some media depictions would have you believe (thankfully, Sheldon Cooper is just a product of bad writing), but it is true that for most autistic people, we see and experience the world in a different way.

You may have heard of the term ‘neurodiversity’. It’s a relatively new term that appreciates the different ways in which we are able to experience the world around us, and frames autism as a difference, rather than explicitly a disability. This doesn’t negate the fact that some autistic people do consider themselves to have a disability, which is of course, entirely valid. However, neurodiversity is actually a great thing! The term and concept of neurodiversity is a direct result of self advocacy; autistic and other neurodivergent people are slowly being included in the conversation, making our own choices about how to advocate for ourselves in a neurotypical world.

This has made huge steps in working to break down the stereotypes and barriers that exist around autism. The autistic community has been able to come together against harmful groups such as ‘Autism Speaks’ that at one time spoke over us. For those who don’t know, Autism Speaks is an American charity that has advocated for the use of harmful therapies in an attempt to ‘cure’ autism and even in 2009 created a video that claimed an autistic child would ‘make sure your marriage fails’. Note that no autistic people are on its board. More recently, autistic people were at the forefront of the backlash towards Sia’s film Music. It’s hard to know where to begin with the film; from casting a neurotypical actress in the role of an autistic teenager, to including the use of lethal restraints on autistic people, Music is damaging, ignorant, ableist and offensive. Clearly, autistic people still have a lot to contend with. 

Autistic and other neurodivergent people are not mysteries, or puzzles to be solved like the Autism Speaks logo would have you think. We are human beings who just experience life slightly differently. The vast majority of us reject the narratives that have been perpetuated by neurotypical people and have led to huge amounts of abuse which still goes on today. And let’s not forget decades of institutionalisation that saw thousands of autistic people just locked away. 

Thinking about the future, advocacy needs to centre around the voices of autistic and neurodivergent people themselves. Organisations such as the Autism Self Advocacy Network, as well as support groups within Oxford, have been facilitating this and have made great steps in overcoming historic barriers. Within Labour, Neurodivergent Labour has also made steps in centring autistic voices within the party, releasing a Neurodiversity Manifesto that was created by neurodivergent members of the party and adopted in 2019.

There is still a long way to go, but everyday new steps are being made. I would encourage neurotypical allies to stand with us in solidarity, but please remember: nothing about us without us

Sources:

www.autisticadvocacy.org/2009/09/horrific-autism-speaks-i-am-autism-ad-transcript 

www.theguardian.com/film/2021/jan/27/sias-film-music-misrepresents-autistic-people-it-could-also-do-us-damage

www.theguardian.com/society/2019/jun/22/autistic-adults-supported-housing-abuse-risk-care-loophole 

www.ndlabour.co.uk 

Photo by Robina Weermeijer on Unsplash

One thought on “Autism and the importance of self advocacy

  1. Hi Amy!
    This is a beautiful piece that explains autism and the challenges and stereotypes that autistic people face. I completely agree with the idea of nerurodiversity and think this is an idea that needs to be explored more by the autistic community. Myself as an autistic business owner and student contend with these challenges and sterotypes every day. However I would also say that autism defines who I am and makes me, well me! Of course I struggle with autism sometimes but it also helps me in so many other ways. I would simply not be at the stage I am now without it.
    Once again well done and a very well written piece.
    Many thanks
    George
    Owner of Forging Ahead Blacksmithing and 2nd Year Student on Lvl 3 Blacksmithing

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