Snap Decisions: My Confused Eighth Sense

One of the reasons I worried about writing a blog like this, is that although my autistic brain retains a lot of information, it isn't good on stuff like references. I will try to add some as links, but mostly this is from memory. 

Last week I went to the National Autistic Society's professionals conference  (which I will blog about next week). One of the keynote speakers was Dr Wenn Lawson who spoke about something called Interoception. 

Interoception is called the Eighth Sense of the body. Unlike the other senses: smell, taste, touch, sight, hearing etc which are about the interaction between the body and the world, interoception is an internal sense. It informs us if we are thirsty, tired, hungry... or even sexually attracted.

Interoceptive difficulties can mean we forget to eat lunch when carried-away with a project (or Facebook!). Everybody has introceptive difficulties at times. Autistic people however, people with trauma, ADHD, dyspraxia, severe depression... can have more persistent difficulties with interoception. 

Listening to this talk, I realised how often I struggled to remember to eat meals - and to regulate my eating. I now use meal replacements for two meals a day so at least I'm eating regularly and don't over-eat in the evenings. I forget to drink until I'm dehydrated, I don't go to sleep when I'm exhausted... generally I have to work hard, put routines in place, so that I don't ignore my body's needs. I have noticed a lot of autistic people have trouble maintaining a healthy weight (under or overweight). I wonder if that is due to interoceptive difficulties? 

But interoception isn't just about these more straightforward sensations, interoceptive difficulties can also affect more complex behaviours. For instance, we may take a long time to recognise how we feel about something. I'm pretty sure I fancied people as a teenager, but it wasn't until my twenties that I recognised the feeling as sexual attraction. Before that, I had assumed that neurotypicals, in films, books and pop songs were wildly exaggerating this sensation of attraction! To me, it was a vague, almost unnoticed sensation; Like that feeling you get that you've forgotten something not terribly important. 

What I learned about interoception is that for me, it is as if the sensations are out of focus and gradually come into view. But the important thing to remember is that those sensations are there - just unrecognised. 

For counsellors, by the way, interoception is important to know about. Maybe the client isn't 'repressing' their sexual attraction - maybe they literally haven't noticed it? Maybe the overweight client doesn't have psychological issues causing him to overeat. Maybe he just doesn't sense when he's full? It is important to talk to the client about how they sense things like hunger or sexual attraction and listen to what they say with an open mind.

Always consider the possibility that you're looking at a neurological impairment rather than a psychological problem. 

I was reminded of a person I worked with recently, who has terrible time management problems. Have they, as they believe, a psychological issue around control and timekeeping? Or do they simply have interoceptive difficulties around their sense of time? If it is the latter, all the talking about their childhood in the world won't fix it; a time management app might help though! 

But what have interoceptive difficulties got to do with snap decisions, as per my title? Well after blogging about my difficulties in counselling training for some weeks, I decided to switch to another school for my Diploma. I intended to blog about this decision, but it was a delicate thing, because some of my reasons are private. So, instead of blogging about my reasons, I'm blogging about how I processed those reasons into my decision to resign. 

During the conference, I was musing about how I came to important decisions. To many people, autistic people like me can appear to make very sudden, life changing decisions without much warning. I can invariably give you a nice pros-and-cons list with reasons for my decision. What seems to be 'missing' is the run-up to that where I talk to my friends and mentors, talk about problems, explore various options, talk about how I feel etc. Sure, I shared my concerns, told them things I wasn't happy with, but in a neurotypical, talking about minor irritations at work doesn't usually proceed a sudden resignation. 

So, this is how I can explain it: I became unhappy with my course gradually, but I did not register that 'unhappiness' as such, until it had built up to a certain level. This, by the way, is the reason autistic people may appear fine one minute and in total meltdown the next. This lack of awareness of my own emotional state is a feature of my interoceptive difficulties. 

But there is another feature of autistic processing, which Dr Wenn also touched on in his talk: difficulties with 'Big Picture' thinking. 

My interpretation of Dr Wenn's point was that neurotypicals (non-autistic people) solve complex problems top-down. That is rather like drawing the lines round the picture and then gradually colouring it in. So, the 'Big Picture' is "I am unhappy with my course" - that is where they start - and then they gradually fill in the details as they process their thinking. So, the solutions, including 'Resign from my course' are considered right from the start. 

But autistic people like me can't do Big Picture thinking. Instead, we have (as per the diagnostic criteria) "excessive attention to detail and parts of the whole".

So for me there is no drawing I have to colour in, for me it's more like a jigsaw with pieces missing. I was not aware of the overall Big Picture, only of individual difficulties I was having, each like an isolated puzzle piece, placed on the table. Only when sufficient puzzle pieces had been collected was I able to shuffle them about until a picture emerged. "Ah huh!" I say, "I can see the Big Picture now". (This by the way relates to the Pattern Matching I discuss in my previous blog 'My Autism Superpower').

The puzzle pieces are the various feelings and sensations I have which are numbed by interoceptive difficulties. As with so many things in an autistic person's life, I am having to use my cognitive abilities to compensate for my impairment, using my reason to metaphorically place the puzzle pieces on the table and shuffle them around to find the picture. 

Despite my interoceptive difficulties and my struggles with developing the Big Picture, a picture does finally emerge. I see the pattern and having processed everything there is no need to second-guess. The conclusion is clear: I must switch courses if I am to successfully complete my training. 

National Autistic Society Conference on Autism, Sex & Gender May 2019, Review Pt 2

Lunch at the NAS conference (which was just before Geoff Evan's talk, reviewed in Part 1) was a buffet and I was lucky enough to be sat next to some of the speakers - pretty impressive people! I had a moment of embarassment when I tried to explain the Person-Centred Approach counselling training to a woman who turned out to be a senior psychotherapist (in, you guessed it, Person-Centred Approach), but it seemed no offence was taken.

I reflected on how rare this is - for me to make a mistake like that and have the 'victim' of my mistake do no more than laugh good-naturedly, without judging me for being arrogant, or disrespectful etc. (my facial recognition is, like many autistic people's, a bit rubbish so I may even have met her and spoken to her earlier in the day!). It was nice not to have to be constantly on my guard against social errors like that. 

I didn't attend everything in the afternoon, so I'll talk about what I did attend.

Healthy & Rewarding Relationships - Dr Wenn Lawson

The second talk by Dr Wenn that I attended was about three main areas for autistic people in relationships: The first that autistic people have a different 'cognitive style' to neurotypicals, so in relationships it is important to acknowledge those differences.

Secondly, that autistic people need good communication, which takes into account differences such as a single-minded approach and a tendency to be literal/concrete.

And thirdly, that autistic people have a sexuality (even if its asexuality), it is relevant and sexuality in relationships is a two-way street - your sexuality as well as my sexuality.

Dr Wenn reiterated his earlier points about interoceptive difficulties possibly making it harder for an autistic person to discover their sexuality (we are typically older than neurotypicals when we figure it out). He also discussed how single-minded focus, an autism strength in so many settings, can be a difficulty in relationships, in which it is important to understand your partner and where they're coming from.

He shared some interesting stories about relationships in which communication went awry - 'Tom and Sally'. Tom is autistic and doesn't tell Sally what he's thinking because she doesn't ask (she isn't interested, he concludes). But Sally feels Tom is secretive and doesn't want her to know (as he doesn't volunteer information). Both of them emotionally withdraw from the other out of self-preservation. Their relationship is saved when a therapist (Dr Wenn, perhaps?) helps them see their different cognitive styles and different ways of communicating.

This reminded me of a story I once heard of a man whose wife of 50 years said to him,

"You never tell me you love me!"

And he responds (using 'autistic logic'), "I told you I loved you on our wedding day, and I would have told you if my feelings had changed".  

To her, his lack of verbal affection revealed a cooling off of his feelings. To him, her demands for verbal affection implied a lack of faith in his honesty!

But the take-home, I felt, from Dr Wenn's talk was that autistic people do have a sexuality, and it isn't going to go away just because you don't talk about it (there is an historical issue with seeing all disabled people as non-sexual beings).

He did discuss asexuality, which is complex and doesn't necessarily mean a person never wants sex (sex for an asexual person often fulfils a slightly different function to sex for sexual people). So, he wasn't saying that all autistic people are sexual, but that we should all be educated and informed, not just about 'how to do sex properly' (my words) but about relationships and different sexual identities. 

Professional Support (for gender incongruence) - Getting it Right, at the Right Time - Dr James Barrett

Dr James Barrett is the lead clinician at Charing Cross Hospital Gender Identity Clinic, an NHS clinic for adults with gender dysphoria. He has worked in the field of gender dysphoria for over 30 years. His interest in autism came about because of the disproportionately high numbers of patients coming to him who also had autism. Charing Cross's own statistics suggest a level of autism in the gender dysphoric population which is at least ten times that of the typical population.

Much of Dr Barrett's talk was about how to be sure that the autistic/GD individual was not being misunderstood or conflating autistic 'intense special interests' (aka 'perseverations') with genuine gender dysphoria. He talked a lot about the sensitivity required to give such patients time and space (repeating Dr Wenn's earlier advice re interoception). 

At the same time, he strongly advocated supporting the individual to express themselves how they saw fit - especially applicable to learning disabled autistic individuals in residential care, who may be asked to cross-dress 'in private' due to it being perceived as a sexual act, rather than an identity expression. 

Dr Barrett told us a delightful story about an autistic person, assigned male at birth, tall, bearded, muscular - who nevertheless wore dresses and refused any medical support for transition on the grounds that they were female, regardless of their body. Dr Barrett was concerned for her safety, but nevertheless acknowledged that she probably coped better with her gender dysphoria than anyone else he'd met. 

Which did lead into an interesting discussion about autistic trans people and safety. Dr Barrett reported research that showed that the more comfortable with their appearance a person was, the less likely they were to be victimised.

"'Dressing down'," he said, "encouraging an autistic and/or learning-disabled person with gender dysphoria not to dress overtly masculine or feminine, doesn't relieve gender dysphoria and so can make the person more likely, not less likely, to be victimised". 

To illustrate his point, he made the analogy of him dressing in full Highland dress in Oxford Street. People might be surprised at his posh English accent, but from his appearance they would probably assume he was Scottish (he's not) or a fan of Scotland. Conversely, if he dressed in a pinstripe suit and a bowler hat, they might assume he was a banker, even if, on talking to him, they'd discover her knew less than nothing about banking. If, however, he mixed it up, wearing a kilt and bowler hat, carrying bagpipes under one arm and a briefcase on the other, one Highland brogue and one polished Oxford, one white sock with tassels, and one grey sock - people would think he was... well he asked for suggestions and some of them were unprintable! Mostly mocking, some claiming he risked violence. The point is, you are safer and less attention-drawing if you express yourself confidently and with purpose. 

Someone asked about openly non-binary people, and although this analogy doesn't really work, the reality is that a confident non-binary presenting person would still be safer than someone 'dressing down' to try to blend in. Being 'out and proud' at least in many parts of UK, is probably safer than trying not to be noticed.

I'd love to see some research to prove this, but so far, I only have Dr Barrett's word and the anecdotal evidence of gender nonconforming people in my life. 

Dr Barret then went on to discuss sexuality in the contest of autistic/GD people. He shared that many of his autistic/GD patients found a welcome (and some relief from their gender dysphoria) within the Cosplay community. And with regards to finding sexual partners, many felt much safer in the BDSM/kink community, where consent is very explicit and boundaried (with safe words etc) and often even written down in advance, than (to quote Dr Barrett) "...down the local disco"[sic]. 

This statement caused a wave of disquiet among a vocal minority of the delegates, who were muttering about 'putting children in danger' etc. even though we were very clearly talking about consenting adults here.

I was put me in mind of Dr Wenn's comments about how autistic people have a sexuality and it isn't going to disappear just because you disapprove of it. I wondered, were they offended at the idea of a doctor saying something positive about the BDSM community? Or because the participants were autistic people? And why mention children when that wasn't the context? Were they subconsciously infantilising adults with autism? Or was this just knee-jerk 'kink-phobia'? 

From their reactions later in the conference, I have to wonder if they simply fail to see autistic people as adults?

Much of the rest of Dr Barrett's talk, whilst acknowledging the differences for people with autism and gender dysphoria intersectionality, equally applied to neurotypical gender incongruent individuals.

A lot of the controversy in the media these days see gender dysphoria in terms of medical treatments, believing (falsely) that patients are being rushed into irreversible surgery and medical treatments. But Dr Barrett's talk was from a completely different direction - that of supporting people in exploring their gender differences. He talked a lot about 'regretters' - trans people who regretted medical transition but pointed out that the figures were less than half a per cent (lower than almost any other medical treatment on the NHS). 

Those 'regretters' he talked about numbered 16 patients, of whom 2 had physical problems, 2 weren't clear why and only 2 declared they were not, after all, trans. 12 of the 16 were due to lack of social support in their new gender presentation - family rejection, transphobia, prejudice at work etc. In other words, Dr Barrett said, people were causing the very problems they claimed to want to prevent by denying trans people medical support for transition!

What came through very clearly in Dr Barrett's talk though is that medical support for transition should be about supporting the individual, autistic or not, to find the way of being which is most comfortable for them. For some, relieving gender dysphoria is about crossdressing in evenings and weekends, for some, it's about living 24/7 in their preferred gender presentation, but maybe not requiring anything more but social support, for others, like Dr Wenn himself shared, it's about 'the full works" (as he called it). 

As Dr Barrett explained, gender dysphoria is a horrible condition, leading to appalling mental health, self-harm and even suicides. Relieving GD isn't just about doctors like himself - it is about all of us being understanding and supportive of trans and non-binary individuals, allowing them to find their own ways. 

Personal Reflections

After Dr Barrett's excellent talk, I felt I needed to take a break. There were some individuals in the room who seemed harsh and angry, which made no sense to me, but I wandered downstairs and got some coffee while I had a think about things. 

The next event was a Panel Discussion, which I was sorry to miss as the panellists were all autistic people with an interest in autism, gender and sexuality. However, when I returned to the hall towards the end, I realised there was lots of shouting. Some of the delegates, it turned out, were simply there to make a protest against trans people. They threw some horrible leaflets about and were verbally aggressive, refusing to leave. It was very distressing, especially since their favourite targets seemed to be vulnerable autistic people, who'd come to a professional conference, not a political rally. 

I gathered the protest started after a brief discussion on pornography. I was told that a panellist was asked how to stop young people looking at pornography. As I understand it, her answer was about how to educate young people so they can be aware of how deceptive and unreal most pornography is. She did not, apparently, come up with any ideas how to stop young people getting on porn sites in the first place. 

The protest aside, I felt it was a shame this issue wasn't discussed properly. Autistic people find it hard to learn about sexuality because so often we are protected from it. Also, we often require information that is direct to the point of blunt, clear, concrete and non-judgemental. This is invariably not what we get in school, and in the playground, autistic kids are rarely party to the sorts of conversations going round the neurotypical kids. I can remember myself feeling horribly ignorant and naive, wondering about sexuality but really not 'getting it'. 

I can well imagine a bright, curious autistic young person hitting the internet to find out the answers to their questions. Personally, I would much rather they had information from parents and teachers rather than PornHub, but I am not so naive as to believe they won't come across pornography at some point. After all, autistic people invented the Internet! And autistic people need to know how to cope with it - we also need to know how to be safe (psychologically as well as STIs), we need to understand informed consent and we need to understand the law. For instance, a pertinent one these days is about not sending underage partners sexual pictures via their phones. 

It was a shame in a way that I couldn't engage in this discussion due to the protestors, but I did think there was irony in it: so many autistic people like myself worry constantly about being socially appropriate. We try so hard to be polite and inoffensive, but sometimes we mess up. And yet the socially inappropriate people weren't the autistic delegates! 

The end of the conference was somewhat marred by these events and many of us were quite shaken up. I don't think I've ever seen such hatred and fury directed at people in my life. It was shocking and horrible. 

However, it didn't stop all of us getting a tremendous amount out of the conference and I was thrilled to hear of their plans to run it again next year.