Hello, and welcome back to The Autistic Writer. I hope you are all well. If you’re wondering how I’m doing, I guess the best answer I could give is as well as can be expected under the circumstances. I’m still dealing with the emotional fallout from pulling out of buying a house, as I discussed last week. I feel like my life has been unstable for an extended period of time, now. I guess you could say I started to lose my way in life a little around 2008, and it got progressively more difficult until around 2015, which is when I mark the beginning of a long, drawn-out process of severe autistic burnout. In terms of my mental health, I probably hit rock bottom around 2018, and then had ups and down up until now. Since 2018, although there have been a few really tough times with my mental health, I would say the overall trend has been upward. But my general life situation remains volatile. By this, I mean that the place where I’m living is not suitable long-term, and my current job – despite having some great co-workers – is not suitable long-term. These two elements are major facets of my life, and I need to get them sorted out, to remove the uncertainty about my future. I’m now in the process of starting again looking for somewhere new to live, and trying to puzzle out exactly what type of employment I want that will be suitable to carry me through to retirement. I’ll let you know how I get on. But for now, on with the autism stuff…
This week saw the BBC air the first part of a two-part documentary, Inside Our Autistic Minds. The programme is presented by Chris Packham, an openly autistic TV personality mainly associated with nature and wildlife shows. Back in 2018, Packham was announced as an honorary member and ambassador of the National Autistic Society. One of the vice-Presidents of the NAS is the infamous Simon Baron-Cohen, who is regarded by many autistic people as our enemy – with good reason. Baron-Cohen is also the driving force behind the Spectrum 10k project; an undertaking loathed by the overwhelming majority of autistic people who are aware of its aims and implications. Baron-Cohen was also the man who diagnosed former model Christine McGuinness as autistic, as filmed on the BBC’s previous attempt at an autism documentary, Paddy and Christine McGuinness: Our Family and Autism. Paddy McGuinness is a British comedian, actor, TV presenter, and father of autistic children from his marriage with Christine. This is the web of the autism establishment and its links to celebrity. Considering Packham’s connection to Baron-Cohen via the NAS, and the fact that Packham backed Spectrum 10k, I feared the worst for the new documentary. To my pleasant surprise, it wasn’t all bad…
The first episode of the documentary focused on two young autistic people, Flo and Murray. All the autistic people in the documentary came across really well, so some appreciation should go to the director and editor for not manipulating the content into the kind of autistic petting zoo that some autism-related shows become.
The program opened with Packham describing his own autistic experience of the world. I found this a little problematic, as his description was overlaid with graphics and text that reminded me of the scenes from classic movie Terminator in which we see through the killer robot’s eyes as a computer lists relevant information in his field of view. For me, this fed into the whole autism is a superpower myth, and was unhelpful at best.
Following Packham’s introduction, the programme moves on to introduce the two autistic people, Murray and Flo.
Murray is a young non-speaking autistic man, and much of the focus was on his frustration at being unable to communicate as he would like to. Instead of speaking, Murray uses a tablet to make his points. He explained some of his frustration at being infantilised by the people around him; this was particularly upsetting when he explained he’d had to tell people that he had outgrown the children’s TV show, Teletubbies. This infantilisation is something many of us in the autistic community will have experienced to some degree. Murray’s parents, including his father, legendary radio presenter Ken Bruce, (there’s that celebrity link again) clearly love Murray very much, and are understandably protective of him. But perhaps they are also responsible for some of the infantilisation Murray is so frustrated with, so this programme might help with that, if the parents think it through. Murray is certainly in need of some social acceptance, not just awareness. One thing I noticed about Murray was the way he used language via his tablet. I’m a writer of fiction and poetry; literature is a subject I love, and my degree is in English Literature. Murray’s use of language was incredibly compact – and by that I mean brief but filled with meaning. He is remarkably eloquent, with his phrasing also being aesthetically beautiful, to the point of poetic. I wonder if he could forge a career in this direction.
Flo works as a stand-up comedy performer, which kind of encapsulates her ability to mask to a high degree. The focus on Flo was about her frustration at having to mask, and her desire to be her authentic autistic self around people, especially her mother. I thought Flo was incredibly brave to unmask the way she did on the programme, and I applaud her. She obviously has a great relationship with her mother, who accepts her unconditionally, without perhaps understanding what Flo goes through. This is not a criticism of Flo’s mother in any way. I don’t think any non-autistic person can really understand how autistic people operate. Unconditional acceptance is what is required.
The programme also had a segment about some autistic children at a school for autistic girls. To hear these girls, given a voice we all too often don’t get to hear, talking about the social challenges they face, such as bullying, was great. But this segment veered off into something decidedly unhelpful. Packham is filmed in conversation with the headteacher of the school, Sarah Wild, and Francesca Happe, a professor of cognitive science at Kings College London. Happe found her way into my good books some time ago with her criticism of work by Baron-Cohen, but I was disappointed by this conversation – although I cannot know what ended up on the proverbial cutting room floor. Packham asks whether masking might be preventing autistic women and girls from getting support, and the conversation explores that. The answer, with which I wholeheartedly agree, is of course it is. But there’s an unfortunate implication that might be ingested by the unwary; that autistic masking is a wholly or mainly female issue. This implication was also stated more overtly in the McGuinness documentary, so I was frustrated to see it here. The easy way to check whether masking is an issue across both male and female genders is to ask autistic men about it. I can promise you, masking is a huge deal for us, too. The discussion moves onto the shocking figures for suicide among autistic women. This is chilling stuff, and something for us all to consider deeply. Without wanting to detract from the plight of autistic women at all – they have a tough time dealing with being autistic and struggling against misogyny – we should remember that suicide is also a leading cause of death in autistic men.
So, with those criticisms aside, I think the first episode of this was probably more helpful than harmful in bringing some understanding of autism to the general viewer. It can, of course, only go so far. Early in the programme, Packham relates the famous line, if you’ve met one autistic person, you’ve met one autistic person. In this programme, we meet two autistic people (more if you count Packham and the schoolgirls) but the point remains: Every autistic person has a different type of autism. No two are exactly alike. It’s the same principle as fingerprints; unique to the individual. What this programme does is present us with two very different autistic people, and we can hope the general public begin to fill in the blanks of what other autistic people might be like. Now, you might have noticed that at the beginning of this paragraph, I referred to understanding of autism, rather than autism awareness or autism acceptance. That was deliberate. It’s not actually certain that all non-autistic people who watched the documentary will suddenly understand autism better. But what the program will undoubtedly achieve is more autism awareness. The programme was broadcast on a major channel – BBC 2 – at a prime time – 9pm. It was high-profile, with a good amount of media comment, and people were talking about it. That is autism awareness. But does autism awareness equate to what we are really after; autism acceptance? And what do I mean when I say autism acceptance, anyway?
I will never put this blog behind a paywall. I want anyone, anywhere, to be able to access this content at any time. There are costs incurred running this website, however. So if you like what I’m trying to do here, please feel free to show your support with a small contribution via buymeacoffee.com.
For me, autism acceptance will be achieved when we have an attitude in the general public that autistic people are not deficient. When we are seen as equals. When we do not face discrimination in workplaces, educational establishments, and general life. When popular media does not scare-monger about autistic people. When the autism establishment stops the search for cures, therapies and interventions. When autistic children are not traumatised by being forced through ABA. When autistic people can safely go online without being called retards. When non-autistic people in positions of authority stop deciding what’s best for us, and start asking us what we need. Actually, this list could go on for a long time, but you get the idea: There is still a long way to go before we achieve autism acceptance, but the documentary was, I think, a piece of positive awareness-raising. So imagine my surprise, dear reader, when I had a particularly stunning conversation the very day after the documentary aired. I’ll relate the conversation here, with identities protected…
I bumped into a couple of people I’ve not seen for a while. Let’s call them Poi and Ib. I used to see quite a lot of this pair, and interacted with them frequently, but these days, not so much. We get on well, though. So I said something like, “Hey you two. How’s it going?” And they were all like, “Hi Darren. I wish we could see more of you!” I replied along the lines of, “Yeah, I miss our banter, but I’m with some good people now, too.” Then Poi said, in a tone dripping with sarcasm, “Yeah, but they’re all on the spectrum, though.” Poi must have seen the look of shock on my face, and added, “But they’re not like you, Darren, they’re worse than you.” Holy shit. My face must have been a picture of horror, because Ib immediately tried to shuffle Poi away, muttering something like, “You can’t say things like that!” I was too stunned to react properly to what Poi said, and in any case, we were in a situation and environment that severely limited what I could do and say. All through the day after this encounter, my mind kept going back over it. I couldn’t believe it. I never expected to hear something like that from Poi. Thinking about it now, I feel sick. There was obviously a lot of autism awareness from Poi, in the most blunt and unhelpful sense; Poi knows autistic people exist, and has some horrible opinions on the subject. That’s a kind of awareness, I guess. I thought I had been accepted as an autistic person by Poi, but to hear shit like this was awful beyond my ability to describe. And this happened the day after the screening of a high-profile documentary about autistic people. We’ve got a long, long way to go for autism acceptance.
As an experiment, I went to google, and typed in autism awareness month, and almost the first hit was this:
As you can see in the image, we have the ever-present jigsaw piece iconography in relation to autism. The autistic community, almost to the last person, despises the jigsaw piece iconography. We despise the way it implies we are incomplete puzzles; not complete human beings, just needing to be solved by non-autistic people. We’re not; we are whole, valid human beings. And we hate the puzzle piece iconography because of its links to the equally despised Autism Speaks. So if we despise the puzzle piece so much, why is it so ubiquitous in culture and the media in relation to autism? Because the non-autistic world is not listening to us. There can be no more potent example of autism awareness not being autism acceptance than this damned jigsaw puzzle piece.
I will never put this blog behind a paywall. I want anyone, anywhere, to be able to access this content at any time. There are costs incurred running this website, however. So if you like what I’m trying to do here, please feel free to show your support with a small contribution via buymeacoffee.com.
That’s all for this week. Until next time, take care.
Darren
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Why Do I Write This Blog?
When I first found out I was autistic, I was a middle-aged adult and I knew nothing about autism. I quickly learned that there was a serious shortage of information and resources for adults in my situation. With this blog, I aim to inform about autism and autism-related issues as I learn, hopefully helping people who are on a similar journey of discovery. Like anyone who writes a blog, I want to reach as many readers as possible; if you like what I’m doing, please share it with your friends and followers. I will never hide this blog behind a paywall, but running the website does incur costs. If you would like to support, feel free to make a small contribution at BuyMeACoffee.Com.
You might also be interested in David Scothern’s blog, Mortgage Advisor on FIRE, which covers a range of topics including mental health issues and financial independence.
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