Sunday 21st March 2021 – Autistic at Times of Covid-19: Oh hello!

Hi everyone,

Sorry it’s been two months. I was pretty busy, most with the medication reduction, which is now finally over! I kept myself off the internet, in order to allow my brain to stabilise. However, I also have been able to join the National Tutoring Programme, which will allow me to leave the benefits system once it gets going properly by April.

Yes, I spent much of the past two months under my fancy new weighted blanket. But I also did some stuff, which I will update you on now.

Podcast interview!

Two weeks ago, I also spoke to Sarah Stephenson-Hunter, who is a campaigner for disabled and LGBTQIA+ rights. She invited me onto her podcast, which I’m sharing below. It was an intense conversation. I open up about disability, self-hatred, gender and trauma. She’s an excellent interviewer and I recommend her show highly. Find Sarah and all the brilliant things she does here: https://www.simplyequality.com/about-me

Covidious Boy

My partner got the Covid vaccine in February. Neither of us know why, because he didn’t have any underlying conditions and he’s only 25. But I think, because he is diagnosed autistic and may have had some form of social care allocated, that he was classed as vulnerable. Yet I have more recently been in touch with mental health services and have at times been on sickness benefits. We both thought that I was far more likely to receive the jab first.

But the UK healthcare system being what it is, my partner went for his jab. He was fine, until the evening. He woke me up at 1 AM, saying he felt terrible, feverish. As if he were going to die. That sounds melodramatic, but he’s never been sick much. His body was suddenly a war zone and he didn’t really know what to do about it. He thought he had Covid.

My brain was still mid-sleep, so I said I’d call 111 (the non-emergency helpline in the UK). Then he found on the doctor’s note that fever was a common side-effect of the jab. He went back to sleep, after sending an email to his work that he would not go in the next day. At 6, he woke me again. He was terrified he might be fired if he didn’t. No, he wasn’t thinking clearly at that hour, but that fear is one all too common for autistic people with jobs. As you’ll see from the new employment numbers, his concern is utterly legitimate.

I gave him paracetamol and we had a long hug. I took care of him for the rest of the day. He needed it, too. He caught up on sleep, I made sure he was fed, hydrated and gave him medication when he needed it. In the afternoon, during a hug, he told me how much he loved me, and that he never thought someone could ever care for him that much. In the evening he was recovering, though I told him in no uncertain terms that he was not going back to work the next day. He needed that next day too, though he was capable enough to allow me to spend most of my day under the weighted blanket. I needed recovery now.

Steve Silberman in Conversation

I went to an online event where Steve Silberman spoke about Neurotribes and his ongoing projects. He was amazing, as per. In the US, he sees an increase in the preponderance of anti-vax radicalisation. It’s become a huge issue that has brought together some in the soft left and practically all of the radical right. I believe anti-vax has always been and continues to be an expression of the hatred against autistic and neurodivergent people. We need to challenge it wherever we see it.

Medication reduction

I’ve finally done it! I’m on 0 quietiapine. It was oddly less stressful to reduce in steps of 50 mg than in steps of 25 every two weeks. But my own greater understanding of my body’s responses has helped massively. I am learning that my body doesn’t lie. However much I was told it as a child: if I’m not well, I’m not well. I need rest. That rest will then help me recover. It’s quite simple, really. What I was not prepared for was the way my body reacted the first week after quietiapine. I stank. I’m sorry, I really did. Weirdly, my body seemed to sweat out the drug? I’d taken it for 9 years, unnecessarily. I have had far fewer meltdowns in the weeks since I’ve gone down to zero. The most important thing is that I am more aware of my body AND my anxiety levels. It’s not like I’m not alexithymic anymore – I still am. But there is a clear increase in awareness of when and how I need to rest. My partner, though, was most happy that I wouldn’t be as grouchy anymore.

Teeming

I’m still sending out my manuscript to various agents. I have had a few rejections, but nothing more so far. If you’re interested, know people in the publishing industry or just want to read it, please get in touch.

Training

I have given two more training sessions for Oxford University Press, which are available to all OUP staff via their Diversity and Inclusion directory. Unfortunately, they are only for OUP staff, but these trainings are available for your organisation on request.
These training sessions were focused on:
– neurodiversity vs. being a highly sensitive person
– dyspraxia, dyslexia and ADHD
– reasonable adjustments
– being fired for being autistic
Please contact me for details.

Employment numbers

In preparation for these trainings, I found out the most recent employment numbers for autistic people. The facts are staggering. Autistica reported it here: https://www.autistica.org.uk/news/autistic-people-highest-unemployment-rates Please find the original research here: https://www.ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/disability/articles/outcomesfordisabledpeopleintheuk/2020#employment
21.7%. After 34% in 2016. Only 21.7% of autistic adults are in work now, and that’s taking the effects of Covid into account. I will write a subsequent blog on this topic soon.

Tuition

I have started tutoring more autistic and neurodivergent young people. I am shocked but not surprised at how seriously neglectful the British education system is towards people who fall between the cracks. I will write more about this in the future, whilst keeping safe the identities of all concerned.

Protesting

Last week, I was contacted by organisers in Reading about Friday’s protest against the new police laws in the UK. Before the protest, they very kindly shared my blog on keeping safe while protesting in their bio. Find them here: https://www.instagram.com/freereadinguk/?hl=en

Ban Conversion Therapy

Content warnings: discussions of abuse, illness, conversion therapy, homo- and transphobia.

I also got in touch with Stonewall, who are currently campaigning on ending conversion therapy, as the Conservative government committed to in 2018. However, nothing has yet happened and, while the government repeats its mantra of stating that ‘it’s very important to us’, it has not acted. What I contacted Stonewall for was that their activities only seemed to relate to LGBTQIA+ folks without disabilities. Autistic people also receive (and continue to receive) these very same “therapies”. Please find more information here:

https://www.bbc.co.uk/news/uk-politics-56284422

https://www.banconversiontherapy.com/

https://www.stonewall.org.uk/our-work/campaigns/ban-conversion-therapy

Conversion therapy is a system called Applied Behavioural Analysis (ABA), also known as Positive Behavior Support (PBS). It was invented in the 1950s by an American psychiatrist called Ivar Lovaas. It is a behaviourist system, that rewards what is deemed good behaviour and punishes what it conceives of as bad. This has become known as conversion therapy, since it was applied to all forms of behaviour of a psychosexual nature that was considered inappropriate or unacceptable. It “converts” the invert or pervert back to the norm.

These behaviour-based approaches are used widely, especially in services that work with children, to challenge bad behaviour and stop children hurting themselves and others. Or, at least, that is the idea. The only thing it does is escalate the very behaviour they are trying to stop. Classrooms become war zones, because children are assaulted for being who they are.

I contacted Stonewall because, in February, I took part in an SEN training session for Teaching assistants. Part of the training were a few videos that showed autistic children being given ABA. Obviously, the children’s behaviour did not “improve”. All it did was escalate the behaviour and increase anxiety. We saw restraint being applied to children, even wilful ignoring of toddlers until they looked depressed beyond anything I’ve seen outside a psych ward. I was happy I was there, to say: “You have just seen child abuse.” I had to do a lot of flapping afterwards.

I recently was emailed by Totaljobs for an ABA tutor role in Guildford. This is because the algorithm is aware that I am a teacher, a tutor and I have specialist knowledge of autism and neurodiversity. I contacted the website, stating that I was concerned:

ABA therapy, as defined by Ivar Lovaas, is known as conversion therapy and recently made illegal for LGBT children in the UK. The autistic community understands it as a concerted effort to humiliate and punish us for being who we are and ABA is considered child abuse. I am concerned that you are advertising child abuse on your website.

Jorik – 24th February 2021

This is what they said:

Thank you for raising your concerns regarding this role.

An ABA tutor is a recognised job role i appreciate your concerns and i am sorry for the distress caused by this.

Having read through the job advert there is nothing against our Terms and Conditions.

I can confirm this company have had an established relationship with us and have met our company requirements.

We take every step to try and protect Candidate’s privacy and any clients wishing to use our services are vetted to try and ensure they are legitimate recruitment agencies/employers.

If you have any concerns regarding the practice of this company and the role itself please contact relevant governing body. 

Wed, 24 Feb, 16:19

They’re right. Totaljobs is not doing anything wrong here, even though they are openly advertising child abuse. The issue is that these companies do have established relationships with intermediary job boards. They are vetted and and legitimate. That’s the problem. In a world where abuse is not just legal but normal, we can’t simply demand that companies stop the abusive tactics that have been common practices for decades.

By the way, Totaljobs are still advertising ABA positions, openly. Please find one here that was active on the day I wrote this:
https://www.totaljobs.com/job/aba-tutor/dimensions-job92175559

When I worked for Oxford Health, I had a heated discussion with a member of staff who was pro-ABA and PBS. The reason was “well, the evidence base says that it works”. My response: “Well, whose evidence base? Who funded the research? Who advocates for it? Who benefits from it? It’s not autistics!” They said I was being anti-science. I had a meltdown. This was the same approach that underlay the “treatment” experienced by Connor Sparrowhawk that led to his death, at that very site. That conversation was one of the main reasons my connection with Oxford Health was ended.

Ending ABA is close to my heart. It breeds a sense of coldness towards autistic people in the staff who are supposed to care for them. If we express pain or discomfort, they are taught that this is bad behaviour and we need punishment. The culture that becomes ingrained in the school is one of conflict: ‘we, are fighting you. We are righteous and we are winning.’ All non-normative behaviour is punished. And people are surprised at the level of mental illness and suicide rates in the autistic community.

Connor Sparrowhawk died in an ATU, or Assessment and Treatment Units either within the NHS or privately run. When we talk about abuse received by autistic and neurodivergent people in ATUs or institutions, we are also referring to the Panorama story in Whorlton Hall, see: https://www.bbc.co.uk/news/av/health-48371390

Since then, ATUs have been renamed, but with no change in approaches. Again, cruelty within ABA is not a flaw, it’s a feature. Punishing individual bad actors is necessary, but doesn’t change the fact that the very practice is abuse.

I was never given ABA (that I’m aware of). Though I can see I internalised parts of behaviourist methods in my approach to my own stims, especially before 2017. I used to punish myself for stimming, rocking or echoing. That doesn’t come from nowhere.

ABA does nothing but breed self-hatred and subservience in autistic people and PTSD follows suit.

To only end it for LGBTQIA+ people is to miss the point entirely. As Sarah and I discussed on the podcast; many, many neurodivergent people are gender-nonconforming and queer. Someone who is autistic and trans, for instance, may still receive the exact same therapies to suppress their trans identity, as their gender identity will be disbelieved. They will be forced to dress “normally”, a normal that does not distinguish between autism and queerness. The only thing they need to be is not them. Ergo, suicidal distress. Simply ending it for queers is to not end it at all for those of us who are both.

I messaged Stonewall to ask about this. I was told I would be contacted two weeks ago. I sent a chasing message. No luck as yet. I will keep you informed. Still, if you’re in the UK: write to your MPs, take part in the action to end conversion therapy. Stonewall’s action is vital and the best start to ending this harmful practice and protecting queer people’s lives. But: in your message, also state the urgency of ending the practice outright. If you’re not in the UK, contact your community about ending the practice close to you. We are neurodivergent AND we are queer. We deserve as much protection as neurotypical queers.

End

Phew. That was a lot, wasn’t it? I’ll be attending the Jessica Kingsley Publishing events from tomorrow, so I hope I’ll see some of you there. I’m going to cuddle my man. He needs one. In the meantime, I’ll see you next week!