Thursday 13 July 2017

Locked In For Autism ableist stunt

I came across the following article on the Neurodiverse UK Facebook page earlier and it's really made me furious:
I've just emailed the person organising it with the response below and I will be very interested to see the response, if I even get one.
I have also, annoyingly, just realised that I also meant to say that at the end of the 50 hours, the person in the box gets to go back to their normal, everyday life, whereas us autistics live our often-marginalised lives 24/7. Ah well, it's a minor point and I said quite a bit else.

Dear Andy,
I have just learned of the above event through the Hackney Gazette and am curious about why Caudwell Children is persisting in these events (I am aware of one occurring in Burnley recently and that another is planned for one in Birmingham in August) despite the fact that many of my fellow autistics are voicing their objections to it for a number of very good and well-explained reasons. I know for a fact that the organisation is well aware of our repeated objections, which is why I was hoping you or someone else within the organisation could justify to me your reasons for continuing this stunt.
We are still persistently demonised and dehumanised by the world at large. Stunts like these do nothing to reduce that and in fact are more likely to exacerbate it.
It plays into an old, tired and inaccurate stereotype of autism. It perpetuates narrow, restricted and actively harmful stereotypes of autism.
It does nothing to improve awareness, only increasing fear and hatred of autism. We want to be accepted for who we are as we are. As autistics. We want the younger generation of autistic children to grow up accepting who they are and being okay with that, not feeling hated, feared and rejected by the world because they are neurologically different from the majority of the population. The world is hostile enough towards us as it is. We want these children to grow up into happy, confident autistic adults. There is a phrase in the Deaf community of "Deaf positive", and it means that Deaf people are accepting of their Deaf identity and are positive and confident about it, not feeling marginalised and separated from a world that views them as defective and does not accept them. Autistic children need that, not to have overhwelmingly negative feelings about their intrinsic nature; they need to know the world accepts them and does not view them as defective, need to know that they are as equally valued and wanted as their neurotypical counterparts. This stunt of yours sends a clear message that they are defective, rejected, unwanted and inferior. A cat is not a defective dog; it is a cat. An autistic is not a defective neurotypical.

Every day parents are being told that their child is autistic, and stunts like this serve only to send the message that we are frightening, separate, Other. It suggests that there is a "normal", neurotypical child "trapped" inside this autistic outer layer, and that if we break through that outer layer we can reach the "normal" child that is being held prisoner by autism. That is simply impossible, because there is no "normal", NT child trapped inside a shell of autism. Autistic *is* their/our normal and the world should accept that, and work to include us and break down the barriers, not add to them.

Persisting to carry out these events despite many objections from people who are actually autistic clearly demonstrates that your organisation does not want to hear actual autistic voices, that you are essentially sticking your fingers in your ears and going "La la la, I can't hear you". It sends a very strong message to us autistics that we don't matter, that our input and feedback is irrelevant, that you consider our perspectives unnecessary. An organisation that purports to support autistics needs to listen to autistic voices and listen and act on our requests, preferences and input.
It is overwhelmingly ableist because you presume to know what we want, how we feel, how we experience the world and impose your ideas and preferences on us whilst simultaneously ignoring the voices of those who live the autistic life. The mother whose idea this apparently was is talking about *her* experience, *not* her child's; unless her child has used this description it is not applicable. By persisting with this stunt you are actively silencing us. This is completely unacceptable. It sends a message to autistics that we don't matter, that our perspective is worthless; younger autistics will learn that their voices don't matter and so will give up speaking out, and they (and the world) will suffer because of it.
There's a saying in the autistic community that needs to be taken on board by your organisation: Nothing About Us Without Us. So far all I see you doing is *everything* about us without us, and that is unacceptable.
Your organisation seems to believe it is helping us. We are telling us that you are harming, not helping, us, yet you continue with this stunt; at this point it is wilful ignoring and silencing of us.
I also find your us of the phrase "unique, once-in-a-lifetime experience" in the interview with the paper completely inappropriate, because such terms are usually used in reference to an exotic, luxurious holiday or similar and so, with the way the human brain works, people will unconsciously equate the two. It is not a holiday or anything like that, and so it is disingenuous in the extreme to use such language.
This stunt is tokenism, a pat on the back for neurotypical people to feel good about themselves. It is *not* about the autistics.
And yes, I am using "autistic" (identity-first language, or IFL) rather than the person-first language, or PFL ("has autism"/"person with autism") rife throughout the article and your interview because the vast majority of autistics favour IFL and actively reject PFL. The National Autistic Society has recent data clearly demonstrating this and the fact that you persist in using PFL is yet another indicator that Caudwell Children does not listen to autistic voices.
The article below is not mine, but it seems your organisation needs reminding of a few things on this matter.
I await your response.


  1. Excellent!! Needed to be said SO badly.. I'm ranting everywhere I can.

    1. Excellent!

      There's now a Facebook page for the campaign: