Monday 20 May 2019

National Autistic Society Conference on Autism, Sex & Gender May 2019, Review Pt 1

When I booked to attend this conference, it seemed the perfect confluence of my interests in working with the LGBTQ+ community, and the autism community. I assumed that a few autistic people might represent this intersection, but I was in for a surprise. It turns out a lot of autistic people are not straight and/or cisgender.

Arriving at the conference was the stressful bit - no clear signage on the door, my helper and I circumnavigated the entire giant building looking for the entrance. By the time we found it, I was in full meltdown mode, unable to stand still or pay attention to the reception properly. But I figured, if you can't have a meltdown at an autism conference, when can you?

The easy-going approach of the delegates quickly relaxed me though. Most people were professionals working with autistic people, but a surprising number of them were autistic themselves, or what my friend calls 'High Functioning Neurotypicals'. People like Carol Povey, the NAS's Director of the Centre for Autism, with whom I chatted at the door (I'm assuming she's neurotypical - if I'm mistaken, apologies Carol!). 

The facilities were light and airy, despite the great age of the building, and hot drinks and cakes were provided in abundance. So even though there were a lot of people there, I felt at ease. 

The theme of the conference was autism, gender and sexuality, and was presented in a respectful, open-minded and enquiring manner. There were some less than open-minded delegates there too, but I decided to ignore them. There's already enough hatred in the world in my opinion.

To paraphrase Dr James Barrett, the lead consultant at Charing Cross Hospital gender clinic (the largest clinic for gender dysphoria in Europe?):

"When parents are told their child is autistic, they should also be told that there is a fair chance their child is not heterosexual or cisgender"

I didn't attend all of the talks, as it was hard work, but here's the talks I did attend:

Autistic and LGBTQIA+: life experiences and life opportunities - Jonathan Andrews

Jonathan is a trustee of Ambitious About Autism and is the youngest person ever to sit on the board of LGBTQ+ charity, Stonewall. His particular interest is social mobility. I was interested in the way he talked about social mobility as not just about deprived groups slotting into privileged set-ups, but about changing those set-ups to be more inclusive.

"It's not so much about changing the person to fit but changing the workplace to fit LGBTQ+/autistic people". 

As one of those LGBTQ+/autistic people myself, this is music to my ears, but also feels a bit utopian. Still, progress has been made - I remember years ago having an argument with an NAS employment person because I felt most autistic people would never be able to cope with work.

I based that on my own experiences - I worked hard, I was honest, I did what I was told... but still, I was often laid off, or told it just "wasn't working out", and often felt so stressed it made me physically ill. I struggled to 'show initiative' (ie work out the unspoken requirements), I annoyed people, my social skills weren't good enough, I was often bullied and lived in constant fear of being fired. At the time, my self-esteem was so low, I felt I probably deserved it, that I needed to 'try harder'. Looking back, I realise how intolerant my employers were and how simple things such as giving me clear job specs, could have made all the difference. 

More recently, I have struggled to explain to employers and educational establishments what accommodations would help. Jonathan gave us the term "Soft Adjustments" for what we need - LGBTQ+ and autistic people - in the workplace.

'Soft Adjustments', he said, are about awareness, confidence (on the part of the employer) to ask questions, without being scared of getting it wrong. It is about a different mindset.

"Best practice," he said "Is no good without hearts and minds". 

Most importantly, the burden of shouldn't be on diverse people to educate the employer - employers need to meet us half-way. This absolute stated a problem I've felt lately in feeling as if all of the burden of meeting my disability needs is on my shoulders. People ask me what they should do, how I want them to help me. But it isn't a list, it's a conversation! I need to have that conversation, to mutually explore solutions with my employer or tutors, to be able to try things out and see if they work - and no issues if they don't.

In summary, Jonathan says that when encountering diverse people, especially those with complex intersections like LGBTQ+ and autism, we should:

          Listen * Believe * Ask respectfully * Research information

Autism and Gender Identity - Dr Wenn Lawson

In my world, Dr Wenn Lawson is a bit of a rock star. His book 'Life Behind Glass' was one of the first books I read following my autism diagnosis at age 34.

Dr Wenn is an Australian research psychologist (who loves his fMRI scans!), world renowned autism expert and came out quite recently as a transgender man. He is also autistic himself and cheerfully incorporates his lived experience with his scientific research. 

One of the difficulties I have with training as a counsellor is that I am curious, but I don't always know the socially appropriate way to ask questions. What I liked about Dr Wenn is that he made it clear that he was happy and relaxed to answer any questions - even those appallingly inappropriate questions that even I know not to ask a trans man! 

For me, the questions I wanted to ask were "Is it OK if we mention your 'deadname' with reference to your older books, so people know it's you?". He assured me, privately that this didn't concern him at all, although he feels his deadname was actually a pseudonym. Millions of copies of his books, with his previous 'pseudonym' are out there in the world, after all. 

It occurred to me that if people want to be more supportive of autistic people, maybe be a bit more open about what is and is not 'appropriate' to ask? Or at least, not assume the worst of us if we do ask the 'wrong' questions? 

Much of Dr Wenn's talk was on his research into Interoception, the Eighth Sense I blogged about previously.

Interoception is a complicated concept and I grappled to understand it. I was concerned, particularly re. the less than open-minded people at the conference, when Dr Wenn was talking about how to tell if a client had interoceptive difficulties due to their autism, or genuine gender dysphoria. He explained how the two could be confused, especially since autistic people can be excessively socially compliant.

For instance, a boy likes wearing skirts because they are cooler in the summer. He likes skirts because they relieve sensory discomfort, but then he is told "Skirts are for girls". He concludes, therefore, using logic, that he must be a girl. He tells his parents this, who immediately worry he is trans. Actually, he may not be, but it takes good psychotherapy, and a lot of listening and unpicking of social understanding to figure this out. 

Dr Wenn also explained how interoceptive difficulties could explain why an autistic trans or gay/bi individual might take longer than most to figure it out. Actually, identifying feelings as sexual attraction or gender identity could take a lot longer. Dr Wenn himself came out in his 60s! 

So, Dr Wenn was clearly not saying all gender dysphoria is interoceptive difficulties, or vice versa, but rather we need to give autistic people time, listen to them, help them unpick their personal, genuine feelings from social compliance and allow them the freedom to explore their identity without pressure. As a trainee counsellor with a lot of Person-Centred background, this resonated strongly with me. 

My fears are that Dr Wenn's research could be misinterpreted by people with an antagonistic ideology. 

Being Safe - Geoff Evans

I ended up in Geoff's talk on safeguarding vulnerable adults by accident, having thought the talk had little to do with my intended client group. But it was actually really informative.

Geoff is an Independent Autism Consultant, with a background in education and safeguarding. His talk came with many poignant anecdotes about how, by keeping learning disabled and autistic young people ignorant and naive, we effectively put them in a 'prison of protection'. They go out into the world with no idea how to keep themselves safe.

This especially applies to LD and autistic people who are LGBTQ+ - often sex and relationship education in special schools and units completely ignores non-reproductive and non-heterosexual sex. Such youngsters, when they hit adulthood are frequently victimised and exploited. 

To add to this, in schools, children are constantly told that they have to comply "You're not allowed to say 'No'," he said. "So what happens when you go out into the world and someone orders you to perform some sexual act. Well, you've never been allowed to say no! Your feelings have never mattered. And this is worse for special needs kids whose behaviour is often heavily controlled, due to fears of 'safety' '

He gave the example of a 15 year old kicking off in a classroom - they need to be 'controlled' in that scenario, for obvious reasons, but ways of controlling behaviour are about coercion, not teaching the child why.

He then gave a harrowing example of a young man who was lured into the public toilets on the promise of £5 for his Playstation. He had no idea what the perpetrator intended to do with him but was entirely focussed on the reward. The boy was arrested for soliciting! (fortunately, it was sorted out, but illustrates the way we fail to protect young people). 

In summary he said we need to educate young people to understand the world, give them more freedom (to make mistakes) and be much franker and more direct about information. 

_______________________________________________________________________________

One of the big difficulties I have with writing a blog like this is that old autism diagnostic problem of "excessive attention to parts of the whole", or in other words excessive attention to detail. That makes writing a 'big picture' blog of what the conference was like a bit tricky. Hence, I haven't tried. I have just told you what I learned and hoped to have reported (and quoted) it accurately. 

So, I'm going to return to this subject later in the week and tell you a bit more about what I learned and how I experienced the conference, in Part 2.

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