#autistica

Their research isn’t on ‘cures’; the goal is “long, healthy, happy lives.” They’re involved at the moment in trialling something I desperately want to see become a thing: regular health checkups designed specifically for autistic people, aiming to compensate for the barriers inaccessibility and alexithymia causes in accessing health care.

(Autism doesn’t directly cause any physical malady, but autistic people have a 16-year gap in life expectancy compared to autistic people due at least in part to issues accessing healthcare.)

April 24th: Talk about community

I wish the autism community was like an Animal Crossing Island, we could all live together in our own lovely houses on this idyllic island with all kinds of interesting wildlife. We would all be accepting of each other and everyone could stim whenever they felt the need.

As it stands, for me at the moment the autism community exists in pockets online. Part of my autism community is here on Tumblr, part of it is through Facebook groups and part of it is through Autistica’s Discover Network. The community means different things depending on which pocket I’m in. Here it’s about feeling accepted, having a sense of belonging and learning from others experiences. The Facebook groups I’m in are more specific to mental health support for autistic people or specifically for autistic women. These I use more for information because people can get quite defensive and I’m worried about saying the wrong thing and being attacked. Autistica is a research charity, as someone who loves science, I love having influence over autism research priorities and projects. It’s fascinating to hear from autistic researchers and hear from other people interested in research.

Autistica is a charity in the UK that funds research for autism and related special needs. It was founded in 2004 by Dame Stephanie Shirley as the UK version of Autism Speaks but became independent on the 1st of January 2010 following the "I Am Autism" video which Autistica did not want posted. They are now the UK’s leading charity in medical research to do with autism. 

Autistica researches ways to help autistic people, such as reducing the age in which people get diagnosed meaning they can get help from an earlier age whilst the brain is still learning. They also are developing treatments for people with autism with reoccurring issues/problems such as severe maladaptive behaviours; epilepsy and ADHD. Finally they also research the ageing process with autism, this is so they can understand how it changes throughout someone’s lifespan.  

This has caused them to look into the statistics of mental health and suicide related links with autism and the high numbers compared to neurotypical people. For example 70% of autistic people have problems with mental health and then on top of that have poorer physical heath meaning they have a lower life expectancy than neurotypical individuals. With the help of research they will be able to develop correct medication to treat depression if they understand the cause but unfortunately only £6.60 is spent per autistic head in research.

https://www.autistica.org.uk/our-research/our-research

https://web.archive.org/web/20110716150049/http://www.steveshirley.com/autismspeaks.asp

http://autisticbfh.blogspot.com/2010/01/autism-speaks-loses-uk-affiliate.html

Anon, I’m sorry you had to find out about this, but thank you so much for sending this in. Fight the mystery … oh for the love of my precarious sanity, seriously!

There’s a lot of bad autism organisations and so much less discussion about them, which makes it hard for us and those who support us to know who is and isn’t good, and I am glad, anon, for the opportunity to talk about this a little more. Autism $peaks has earnt their hate more than deservedly, but I think we need to open up conversations to include other hateful “charities”. For example, A$ doesn’t have a lot of presence here in Australia, but we have our own collection of state non-profits that need speaking about. The same goes for all the smaller charities and organisations, wherever they are, who are causing the same harm (just with a smaller public profile).

I despise Amaze, which is the state non-profit autism organisation here in Victoria, Australia. Especially for the unforgivable, condescending line on their adult autistics info page: “Individuals on the Autism Spectrum Can Make Friends”. In addition to their being awful, person-first language that insists on using “individual” and spreading misinformation about autism and gender, of course, because that line is only the terrible icing on the cake of hatred and fail.

(Wow, I did not know that I can make friends! Or that I even should! I so needed a bunch of allistics to tell me how important friends are and that friend-making is an allistic skill on which I need to work! *rage-flaps* ETA: this line infuriates me so much I went into sarcasm mode without specifying. I’m so sorry!)

I’ve also heard bad things about the UK’s Autistica - their heavily research-focus language (and person-first usage) doesn’t fill me with confidence. I don’t know how much they’ve improved now they’re no longer affiliated with A$, however, so if a UK person could fill us in, I’d be grateful.

Likewise, if you know of an organisation that claims to support us but causes harm, I’d be so grateful if you’d comment away, because I will add this information to the post.

I think it’s time we let these awful groups share the stage with the awful A$, because we need to know who else claims to support us and actually wounds us. And while it’s April 30 already here in Australia, I’m thinking that next year, in the lead up to April, I’d love to see some of these awful organisations talked about with the same frequency we discuss A$.

Thank you so much for this ask, anon. Thank you.

ETA: @2hon5 says,

In America there’s an organization called TACA, or Talk About Curing Autism. It’s right in the name. They’re just like Autism $peaks and the cure culture/tragedy culture/autism parent martyr culture/ETC. is rampant and disgusting I went to their home page to check that they’re actually a national thing and it was… bad. Really bad.

Autistica is the UK's version of Autism $peaks, I think. They share some of the same views of eliminating autism and making autistic kids indistinguishable from peers. They are on a lot of autistic people's avoid list.