Monday 10th October 2022: Backlash and Resistance

Hello friends.

Yes, I know, it’s been a while. I had an absolutely wonderful holiday and spent the next few weeks making sure I’d hit the ground running with work. Of course, my work being what it is, I am relying on outside forces to be able to get things done.

What’s been difficult to adapt to has simply been having more hours in the week available. I’m doing a lot of interviews for FFAS at the moment, as I try to get back into a semblance of normalcy. And even if I’m working a lot less than I was before, all the better for it.

I haven’t been able to write blogs recently, simply because I was busy, ill, exhausted or all of the above. After a holiday, wonderful as it was, I will simply need a few days to properly recuperate (yes, I promise, we’ll have a post-holiday blog).

Still, we’ve been living in Bath for over a year now. Things are going a trillion times better than they were this time last year. My partner is still worth his weight in gold and I’m actually in a place where I have the time, place and money to get some serious writing done. I have been increasing my ratio of weight to gold by being on a diet. It appears to be working, too. Again, a blog about how to diet when autistic is upcoming. I want to also write a blog about therapy and why it isn’t working.

But not before this blog. This is one of those serious ones. There might be something stupid in it towards the end but not yet. Be patient, there might be some light at the end of the tunnel. A flashing one saying: “Subsequent tunnel delayed indefinitely.” Life is like that, you know. So, triggerwarnings up the wazoo for bigotry, ableism, racism, structural inequality, eugenics, death, and Sia. Final trigger warning: MASSIVE blog. Feel free to take it in at your own pace.

Backlash

Why I am talking about backlash? A few weeks ago, I had a moment of dark night of the soul, so to speak.

I was scrolling on Instagram, exhausted, when I saw this:

View this post on Instagram

A post shared by autistic amelia 🌈 (@autisticpositivity)

In particular the image above. To my shame, I only realised today that the second image was doctored. Still, it is a valid one and some parents of unvaccinated children have gone on record saying they preferred their children having died of measles, rubella or mumps rather than be autistic.*

I remembered that these people, who prefer to believe autism is a naturally occurring part of neurology and (quite possibly) present across species, are still around. They preferred to listen to Andrew Wakefield, rather than actually autistic people. They still believe that ABA shouldn’t be included in conversion therapy legislation. They still believe autistic people have the so-called “triad of impairments” (Persistent difficulties with social communication. Persistent difficulties with social interaction. Rigid and repetitive behaviours, resistance to change or narrowed interests), as defined and since denounced by Lorna Wing and Judith Gould (after Wing’s death).

Most of the autism support around in the 1980s, 1990s and 2000s insisted on the dehumanisation of autistic people, seeing our behaviour as pathological and baseless. We needed to be taught not to be. But they failed, we are still here. Thus far.

That’s why I’m talking about backlash. A backlash is not just a reactionary response to minorities achieving rights. It is also one that anticipates rights being achieved. See the video below for more on Susan Faludi’s book Backlash from the 1980s.

It was Sia, wasn’t it?

Last year, the online autistic community had a huge victory: the critical drubbing of Sia’s film Music, a vile piece of self-promotion where autistic people are objects for Sia to use to celebrate, well, herself. Ponderful, an actually autistic youtuber, describes the film better than I can. Mostly because I can’t handle watching it right now. Or ever.

Sia being called out on ableism is undeniably good news. For the first time in my memory, pop culture has listened to the voices of actually autistic people when it comes to how we are represented. The fact Sia was confronted personally by autistics about working with Auti$m $peaks and taken to task for it – as well as her apology is massively significant. It’s a huge deal.

But-

There’s always a but, isn’t there.

Yes there is. Suck it up.

But ten, maybe even five years ago, she would have won Oscars, not Razzies. Her portrayal of Music as an autistic person with few or no words, excluding autistic people from the production process, the celebration of restraint training (sold in education settings under the tradename Teamteach) as the one and only form of saving us from ourselves – it would have raked in the Oscars for her music, the script, for Kate Hudson, definitely a nomination for Ziegler in the Supporting category.

We haven’t tackled the rot, basically.

Conversion Therapy: Autism as a Cudgel

You know that I deeply care about ending ABA, PBS, restraint and other forms of conversion therapy, for all people. It doesn’t work, the science is bullshit and all it does is cause further trauma. I’ve been trying to change the narrative about conversion therapy for years, but it’s been impossible to get anyone who isn’t autistic themselves to make the connection – including in the NHS.

It’s like you’re looking at a dog and a toaster and everyone but the people you care most about points at the toaster and says: “Ahh… can I pet it?” Try to take the toaster for walks. Clean up after it. Give it water in a metal bowl. And when you say: “you’re treating this toaster like a dog. Plus, you’ve left the real dog all alone!” you’re accused of being anti-science.

There, a bit of levity. Happy now? Good. The rest is gonna be awful.

People who know nothing about the way autistic people are treated assume cultural products made about us without our involvement are just true about us. Someone once told me that they worked in child and adolescent mental health care as a clinician. A psychiatrist boasted he learned all he knew about autism from Curious Incident of the Dog in the Night-Time, a book and play I’ve discussed in previous blogs, in particular the Autistic Coding on Stage series 2 years ago. Have a look there. TLDR: not a fan.

What is the consequence? Panorama had a journalist go undercover at a mental health hospital in Manchester.

BBC iPlayer – Panorama – Undercover Hospital: Patients at Risk

The blurb says: “A Panorama undercover investigation has found evidence that a secure NHS psychiatric hospital is failing to protect some of its vulnerable patients. Secret filming reveals evidence of a toxic staff culture, patients being taunted and bullied, inappropriate use of restraint and falsification of important medical paperwork. Experts who have reviewed Panorama’s findings have questioned the hospital’s safety, saying the evidence suggests its core therapeutic mission is being corrupted.“

The documentary focuses, understandably, on individual mistreatment and abuse that individual members of staff commit. It’s already a massive step in the right direction that autistic people get a voice in this documentary at all, let alone that the documentary makers agree that what the patients are being subjected to is abuse. Not too long ago, it would have been seen as reasonable. Just trying to keep ourselves safe. From who exactly? From ourselves.

This leads us on to make a more systemic argument: the problem is far greater than these individual abusers. The NHS is creating organisations where abusers flourish and are rewarded for abuse. They do so by implementing strategies that are built to damage autistic and neurodivergent people. There is no appropriate use of restraint, unless consented to in advance by the patient in their safety plan, which needs to be regularly updated by the patient, possibly with help from a clinician and/or family members and friends.

The “core therapeutic mission” has not been changed in light of the CCF, clearly. The abuse present is not a bug, it’s a feature. The first part of the documentary focuses on the repeated restraining and isolation of Harley, an autistic teenage girl. “They’re doing this to break me,” Harley says, and she’s right. That’s because of the basic training staff gets is Teamteach, or restraint, a version of conversion therapy. If you break them, you might get at the neurotypical underneath. That’s the point. The point of behavioural therapy is to destroy everything that is autistic about a person and create a new, supposedly neurotypical, human being.

Obviously, behaviourist interventions, shame and violence fail. As they always do. Then, the staff can do nothing but double down on the abuse. And it is abuse. As much as PBS specifically dresses itself up in progressive language and tries to appropriate neurodiversity, the purpose is still the same: change the human, not the environment. That is the point here, too.

The fact Harley’s mum and sister were even able to say how disgusted they were by the torture she undergoes is huge. It is indicative of a potential sea-change in the way autistic people’s lives are valued and discussed. Only 20 years ago, people were protesting against our very existence in support of Andrew Wakefield.

Autistic patients are not the only ones mentioned in the programme. Schizophrenic people are also ritually humiliated by staff.

Then there’s also the drugged, slurred voices of the patients there. As someone who’s spent time in psychiatric hospitals and have been overmedicated, I know exactly what it’s like to be drugged to the point of being barely conscious.

Really?

Then there’s the accusations of patients exaggerating health issues. This is not just common in society – I believe that HR education materials actually teach that. I heard that a few weeks ago. My partner and I were in a café in Bath, where I overheard a conversation between friends (all three of them queer I believe), where they were talking about a former mutual friend, that they knew back in school.

Apparently this woman wasn’t great with personal space and was “a slag,” for sleeping with someone else’s ex. She was also mad, apparently: “I don’t know – she’s insane.”
“I wouldn’t want to give her a diagnosis but maybe autism?”
“Mhmm. Or ADHD.”
“Yeah, one of those. That sounds about right.”
“Though she’s completely responsible for her own actions.”
“Oh yeah, 100%.”
“She’s a bitch and she knows it.”
“No hospital will cure her of that!”

I told my partner that we needed to leave, so we did, I was shaking. I didn’t even want to put them right. Maybe I should have. What would you have done?

I’m just baffled how neurotypicals can both demean us by saying we’re insane, pathologising us while in the same time holding us uniquely responsible for the actions they deem us to have taken.

Exclusion rates and Criminality  

Bigoted views on autistic people are still highly prevalent. We are seeing the increased institutionalisation of autistic people in criminal settings. The Panorama documentary focuses more on violent offenders when it looks at the men in the hospital in Manchester. But for many autistic young people of colour and autistic working class young people, there is a straight route from school to exclusion to prison, we’ve spoken about that before, haven’t we? Let me know if we haven’t. A friend of mine worked in a prison before the pandemic and I’d love to talk to her about it. The next video talks about that in connection to America’s gun violence epidemic.

Due to the Double Empathy problem, our behaviour is seen as unprovoked, incomprehensible and dangerous by neurotypicals. If you add further social marginalisation to that, you’ll understand why I always say that I’m alive right now because I’m white. If I had a public meltdown like I did in 2014 when I lived in London and I hadn’t been white, I’d be dead right now. The cops would have shot me.

In all honesty, I had to stop watching the documentary after about 45 minutes, because frankly, it hurt too much. But it made my partner order a book about mental health institutions in the UK. And he’s not normally a non-fiction boy.

My main point is: the “core therapeutic mission” of the NHS has not been updated since the 2009 Autism Act. The Oliver McGowan trainings have not been provided or they have not had the effect necessary. The problem with the staff not being trained enough is a huge issue, yes. But perhaps an even greater problem is what they are being trained in. The core therapeutic mission of the NHS, in practice, still consistent with the treatment of autistic people in society. That is to say, it is still eugenicist. Kill the autism, then build the patient up from the ground. If that fails, then that is the fault of the patient.

Beyond the NHS

I used the following article on Andrew Wakefield when learning about neurodiversity politics back in 2018:

https://www.theguardian.com/society/2013/apr/06/what-happened-man-mmr-panic

“In his book on autism, (Dr. Michael) Fitzpatrick writes that secretin was “enthusiastically endorsed by some prominent figures in the world of alternative autism” but, by December 1999, “the secretin bubble burst” when a double-blind placebo-controlled trial of 60 autistic children concluded it was not an effective treatment. Four later trials echoed the conclusion, according to Fitzpatrick. Then, a 2004 review of 15 double-blind, randomised, controlled trials of secretin for autism showed almost none reported any significant effects and none concluded that secretin was effective.”

Last year (2021) I started a job where I had to finish onboarding modules as a requirement to start working. I paid for did the NAS trainings (which were pretty easy, since I teach the exact same stuff) and then did their in-house training materials as well. This in-house training had been created in 2011. This was training for people who were supposed to work in close proximity with autistic people.

Suffice it to say, it was bad. Not just was Secretin mentioned as “potentially highly effective,” there was plenty of advertising of ABA, Early Intervention (or, rather, ABA for babies and toddlers) and other biochemical nonsense related to the Andrew Wakefield scandal. Last I heard, only some of the wording has been changed on those trainings. I had been trying to make a complaint, but there were no possible avenues, and the only places I had left were the Department for Education and the Equality and Human Rights Commission, both of which are headed, all the way up the scale, by politicians who are pro-conversion therapy and anti-LBGTQIA+. The HRC ruled against trans equality recently, so how is it going to play with autism? Not great, that’s what I’m saying.

What am I getting at?

All of this leads to my main point. I think we’re next in line for the culture wars. I really do. The other day I spoke to political scientist Aurelien Mondon, I was interviewing him for Feeling Fast and Slow. I shared my nervousness that we’ll be next in the right-wing press’ firing line. We are seeing some small victories, but are far from being represented. When I looked on Wikipedia in 2018, the vast majority of autistic people on its category page was made up of serial killers and violent abusers. Now, things are changing, with a far more even-handed approach between serial killers and abusers on the one hand and, well, humans on the other. And, well, Elon Musk. But we can’t have it all.

As the vast majority of autistic people are LGBTQIA+, there is a history of associating violence (and, once again, mass shootings) with the perpetrators being autistic, the issue of radicalisation of young men and, well, pure disgust with disabled people – it’s a perfect storm. The hatred of transpeople in the UK is indicative of what can happen to a society that radicalises. The idea that autistic people can’t actually understand consent, according to the UK supreme court, means that autistic sexuality can be limited when it becomes useful for the party in power to do so. The fact that many of us are trans, intersex or non-binary is already being used against us, by parliamentarians in the House of Commons. I mentioned this in my blog about my meeting with Wera Hobhouse MP.

Then there’s good old eugenics, the measuring of skulls, Necropolitics (even more serious now with Climate Change), deciding who is human and who is not. It’s not just a relaunch: it never went away! The conference on eugenics at my old stomping ground, UCL, a few years back, which Dominic Cummings attended, is still fresh in my mind. Then there was the Do Not Resuscitate Orders that were applied across the board to autistic people, despite Public Health England shouting that it would not allow this.

Then there is the fact we “cost a lot of money,” using up more resources than other “diseases.” (link to story from 2014. There is probably a more recent version of this story out there, but still.

Volksgenosse, dass ist auch Ihr Geld.

I am referring to genocide, friends.

It’s not just the Tories. The Labour Party under Starmer is flirting with some dangerous shit when kowtowing to so-called Gender Critical feminists, because when they define who a woman is or isn’t, they don’t just mean identity, they also mean neurotype.

We are more likely to be on benefits but we are the least likely to be in work, due to the very nature the workplace operates and how it has syncretised certain privileges over the past 40 years that benefit neurotypicals and not us. There’s the ‘undeserving poor’ argument, which was the one talking point agreed on by nearly all who voted to leave the EU in 2016. That talking point is ripe for a comeback.

All I’m saying is: I hope I’m wrong. But we could be in for a difficult few years.

Still, we are together. I don’t think things can get any worse than they already are. But the people who are already against us will get a lot louder. For now, we are, at least, together. What matters is, as Dr Mondon said, solidarity: a way to consider empathy in a macro-level. From that, I’ve learned that solidarity is the way we can communicate our autistic empathy. We need to show solidarity in a way that works for us. Never to our detriment, but because our values are with those people who are also us and who are not us. Let’s fight.

Love to all. Next week, something jolly.

J

* I remember seeing an article that interviewed several parents whose children died of the diseases that the MMR vaccine protects against. I think my blocker protects me against seeing it. Not a bad thing, obv. But I still spent an hour scouring the internet for examples of this, but couldn’t find it.