Autistic Pride Day and our Drowned-Out Voices

(There is an easy-read version of this post at the end.)

Today is Autistic Pride Day, a day to celebrate autism, Asperger Syndrome and other similar neurodivergence, proposed 11 years ago by Aspies for Freedom.

Disability pride is a theme that is often overlooked by a society that cannot cope with the idea of disability as anything other than a tragedy. Into that environment come transformative approaches like #AutisticPrideDay. Modelled on queer pride, focused on acceptance and celebration (not ‘awareness’) of all who are neurodivergent in an autistic/Aspie direction, the day has inspired some great tweeting and blogging today.

The Silencing of Autistic People, and Amplifying Only Autistic Voices

Many autistic people have spoken of the double-bind where we are rarely listened to on the subjects of autism and neurodiversity. If we can use language, or would otherwise be medically referred to as ‘high functioning’, we are told our voices don’t count because we can’t speak for, or with, those who don’t use language. (As though anyone can speak for anything except their own experience. And as though the voices of non-autistic people who happen to know autistic people are therefore more important than the collective, diverse voices of other autistic and neurodivergent people.) Often, though, so-called ‘high functioning’ autistic people aren’t even listened to on our own behalf. Our voices are drowned out by would-be helpers – who often aren’t saying very helpful things about autism at all.

In a recent example of this: only this week, the excellent Ann Memmott has been reviewing a book on the theology of autism, in preparation for writing her own book on the subject (which I’m very excited about). This has inspired her to tweet and blog about autism-related issues that the book got wrong, often horribly wrong, including empathy in autistic people. (Fair advance warning: this sounds like a damaging and dangerous book.) My heart often drops when I hear about books written on autism by non-autistic people, and especially theologies. There are some terrible theologies out there about disabled people of all kinds – but perhaps especially about neurodivergent and autistic people. I’m excited that Ann, who is autistic herself, is writing a book (with another theologian) on the theology of autism. There is a serious need for more of the voices of autistic Christians to be shared — drowned out as they often are by family, ‘experts’ and others whose experience of autism is not first-hand, and is sometimes based on damaging stereotypes and mythologies.

So, to do my small part in addressing that silencing of disabled people, here are resources that have been shared today, only by #ActuallyAutistic people.

Blog Posts for Autistic Pride Day

Blog posts both new and old have been shared in celebration of today.

One of my favourite informal disability academic networks, #AutisticsInAcademia, put together a blog post about the exciting things many of us are doing in research, and our autism pride. (Includes a bit by me, on my own research and being autistic in academia.)

“So why have I chosen to disclose now? I have begun to realise that non-disclosure can serve to perpetuate the autism myths I so want to dispel. If those autistic individuals, like myself, who can ‘choose’ to, stay hidden – because we are able to mask our difficulties – then there will continue to be less information available to challenge the assumptions people hold about what autism actually ‘is’. Without highlighting the full breadth of the diverse spectrum, autism will continue to be understood as a deficit based diagnosis, rather than a skills-based identity.”
– Julia Leatherland

Andrew Hickey wrote about what he wants from society as an autistic person:

“I don’t want acceptance. I want respect as a minimum, and ideally celebration… things will only change with massive efforts on the part of a society that is completely unwilling to do anything about them (but which is entirely fine with torturing autistic children in the name of modifying their behaviour to “help them” by making them fit in, and with trying to find a “cure” that will erase our individuality and replace us with people who can fit in better — and indeed which pats itself on the back for its efforts to do these things).”

Rebecca Burgess’s wonderful reinterpretation of the ‘spectrum’ of autism as a wheel is a must-read, and is in an easy comic-strip format. Imagining the spectrum not as a line, but as a wheel, helps with understanding why autistic people vary in the things we can and can’t do. It also clarifies why labels like ‘high functioning’ and ‘low functioning’ can be very misleading.

“Sometimes, if someone is diagnosed as being ‘on the spectrum’ and informs another person of this, it’s so that they can get some understanding and respect for the things they are unable to do. But, it is also so they can cooperate with the world around them – so they can be the best in the things they can do.”

Julia Bascom’s ‘Quiet Hands’, about the mistreatment of autistic people who want to use their hands instead of their voice to communicate, is a tough read emotionally. But it’s not long and very accessible. Content warning: this is about routine abuse of autistic people, especially children, presented as ‘therapy’.

“Roger needs a modified chair to help him sit. It came to the classroom fully equipped with straps to tie his hands down.

We threw the straps away. His old school district used them.

He was seven.”

There was an excellent blog post on the churches and the need for them to listen to autistic people in their pews, but it was by a family member rather than an autistic person, so I won’t share it here, but I’ve put it on twitter. I’ll put together a separate post over at naomijacobs.wordpress.com on posts shared today on religion and autism.

Twitter Posts for Autistic Pride Day

And twitter was full of wonderful autistic pride posts today. Here is a selection of the tweets that were shared:

– Owen R. Broadhurst said “This #AutisticPrideDay, know you’re not a disease, a burden, an epidemic, something to be cured or fixed. You’re you, and you’re wonderful.”
– Brooke Winters said “Happy #AutisticPrideDay to all the queer autistics!” (Research is beginning to show that significantly more autistic people than non-autistics are LGBTQ+.)
– The Aspizilla wrote “Fight the media narrative that we’re all dangerous. Donate 2 orgs educating businesses about our value.”
– Celebrating both #AutisticPrideDay & Father’s Day, Hayley Morgan said “My autistic husband is the best Dad. He will be rewarded in beef burgers and WarHammer goodies ” (We are often stereotyped as being unable to be good parents, unable to be good at many ordinary things. Lovely to see autistic dads celebrated on Father’s Day.)
– James Cusack said “I’m proud to be autistic and I’m proud to work with so many talented, inspiring, and innovative autistic people.”
– Sam wrote: said “It’s #AutisticPrideDay and anyone who doesn’t buy me a coffee today is ableist. /jk” and I am completely behind this sentiment and where is my celebratory pot of tea from you all.
– And Anarkoautist reminds us of the unjust truth: “Today is #AutisticPrideDay. There are so many queer autistic people but events like pride marches may not be accessible to us.”
– It was also nice to see a few non-autistic people do a lot of retweeting and reblogging of autistic people’s own thoughts and opinions today. Amplifying autistic voices.

But even Autistic Pride Day, created specifically for neurodivergent people ourselves as it was, is not left alone by those who want to be the voices of autism without allowing us to speak. There was some understandable frustration, on twitter and in blogs, about the hijacking of today’s celebration by those who are not autistic and not working to amplify autistic voices. Several news/media outlets, for example, had recruited the parents of autistic people to write about autism today. Even Autism Speaks attempted to get involved – oh dear. (You can look up the problems with them if you’re interested, or see Andrew Hickey’s post above.)

The struggle for autistic people to get our own voices heard by society continues. If you want to join in, you can help by helping to amplify our voices, not the voices of organisations and individuals that do not have our empowerment at heart.

Happy Autistic Pride Day! I’m off to share burgers with my partner. They thought of me and bought my favourite flavour of everything: plain.

Easy-Read Version:

Autistic Pride Day:

• Disability pride can be hard for people to understand. Sometimes people only want to see disability as a sad thing. Autistic Pride Day is a day of celebration:

Autistic People’s Voices:

• There were lots of good twitter and blog posts about autism today.
• Sometimes people don’t want to hear the ideas of autistic people. They sometimes only listen to parents or doctors instead. This sometimes happens to autistic people who can speak. We are told that we are not like autistic people who cannot speak.
• Ann Memmott has been reading a book about theology and autism. It was not written by an autistic person. Ann said that the book made many mistakes about autism. Ann wrote blog posts on empathy and how autistic people are sometimes treated as different from other people. Ann is writing her own book on theology and autism.
• Here I have only shared blog and twitter posts written by autistic people ourselves. This is my small way of trying to help the voices of autistic people get heard.

Blog Posts and Tweets:

• Andrew Hickey has written about the sad situation for many autistic people today. He writes about the things he wants for autistic people in society. He wants us to have better health. He wants us people to treat us well and not abuse us. He wants people to stop trying to cure us.
• Rebecca Burgess drew a comic about the autism spectrum. The comic explains that this spectrum is more like a wheel. Things like social skills and sensory experience are written on the wheel. Some people find some things on the wheel difficult. They may find other things on the wheel much easier. This helps explain that all autistic people are different.
• Julia Bascom wrote a post about the way some autistic people are mistreated when they want to use their hands to speak. Some autistic people have been told not to use their hands. This has stopped them from communicating in their own ways. It is an emotional post and might be upsetting. But it is easy to read.
• There was also a good blog post asking churches to let autistic people speak for ourselves. This was not written by an autistic person. It was by a family member of autistic people. I will put blog posts about religion and autism on my other blog.
• There were lots of tweets celebrating autism today. They are all linked in the blog post above.

More about Voices:

• Even on Autistic Pride Day, not everyone allowed us to speak for ourselves. People can help by sharing things written and said by autistic people ourselves.
• Happy Autistic Pride Day. My partner bought me my favourite kind of burger and salad, which is plain!