On Whose Behalf? Speaking Up for the Whole Autism Community

For those of us in the Autistic Community who speak and write about life on the Spectrum, I often hear the following critique:

"How can you claim to speak for autistic people when you are nothing like my son? You can talk, study for degrees, get married, have a career... He'll never have any of those things."

Well, I don't claim to speak for all autistic people, and I don't actually know any of my colleagues in the autism writing/speaking community who do either. Although many have been accused. 

This is for two main reasons:
1) There is a saying "If you've met one autistic person, you've met one autistic person".

No one knows this better than an autistic person. Frequently we get people saying things like "You're not autistic. Who diagnosed you? You're nothing like... [insert name of other autistic person]".

I was once told I couldn't be autistic as I was nothing like the autistic kids a person worked with in a Primary School Special Unit - I responded, "Well, I suspect few of your students are in their 50s and mothers of three".

When an autistic speaker or writer speaks about their autistic life we can only speak from our own experience. After all, it's the only experience we can be sure of.

2) As autistic people, we are detail-orientated, not generally 'big picture' thinkers. We know the difficulties we, as individuals have, and can talk about those difficulties. We may know that those difficulties are pretty common among autistic people, but we are not generalising. Generalising isn't really an autistic 'thing' - we'll leave that to the neurotypicals! 😙

So if I say "Autistic people often experience meltdowns..." that'll just be a fact I've encountered. It'll be based on research you can bet, although usually I don't give a reference because it is something that is spoken about so often in the literature, it's really not controversial.

If I say "Meltdowns feel like this..." that'll be from my personal experience.

There is a high chance that many autistic people may relate to what I'm saying - at a recent talk, I received high praise indeed from an autistic 11 year old, who, after my talk went up and said "Miss, Miss! That's just what it's like!"

So that's what I'm trying to do - not so much 'speak for' other autistics but using my own experiences to give a window into the mind of an autistic (mine). I'd love to be able to tell you what you're non-verbal, severely autistic child is thinking, but I can't do that. I'm autistic, not magic! It is my hope that by listening to or reading my experiences, you can see situations through different eyes which may give you an insight, some empathy into what life is like from an autistic looking out.

Facts versus Experience

All autistic people (according to diagnostic criteria etc) experience difficulties with:
a. Social Communication
b. Sensory hyper and hypo sensitivities
c. Organisational problems (aka 'Executive Dysfunction').

The majority suffer chronic anxiety issues, meltdowns and shutdowns.

That's across the Spectrum (or at least I've never met an autistic who didn't). Some autistic people also experience speech and communication difficulties (about 25% are nonverbal - NAS) and 38-42% have intellectual impairment (aka 'Learning Disabilities' in UK - not to be confused with things like dyslexia, which are also common). Since many 'High Functioning'* autistic people remain undiagnosed (about 8 out of 10 some estimate) that figure is probably skewed towards the more severely autistic end.

When I began public speaking and writing, much of my work was like the above - bullet pointed lists and statistics. Its' how my autistic brain works - whilst the famous autistic woman, Temple Grandin wrote a book "Thinking in Pictures" my book would probably have to be called "Thinking in bullet-pointed lists and PowerPoints" (admittedly less catchy). In an attempt to generalise the information for my audience, so they could take it away and apply it to almost any autistic person they met, I bored them to tears.

So when I began this blog, I didn't do that. Instead, I made it very personal and very individual; Very specific. I wrote about my own lived experiences, and then tried to (where possible) tie it into more general autism 'truths' that might apply across the board.

Like many able autistic people, I have spent my life not really feeling listened to. I wasn't even diagnosed until my 30s! I write and speak with the hope that you will listen to me; but its not something I really need these days. I'm lucky - a lot of people listen to me. Many autistic people around you will not have had that experience. I don't know what it is like to be them, but I do know what it is like to not feel listened to, not feel heard.

When I've spoken in schools, kids have been overheard asking, afterwards, "What that lady said, is it like that for you?" Even if the answer is no, at least there has been a conversation. So, no, I can't speak for all autistic people. But I can at least introduce an autistic perspective, and get people thinking about these issues through a different lens.

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* I am not keen on the term 'High Functioning', which is often used, inaccurately to refer to an autistic person with an IQ above 80, and it is assumed that person will be able to function pretty much like a neurotypical with a few differences. This is not the case: some autistic people with intellectual impairments can live pretty independently, some autistic people with genius level IQs need 24/7 care-support. Many of us are high functioning most of the time, but a meltdown or shutdown can rob us of that functioning instantly. I prefer using the term 'Able autistic', but when speaking medically I use the problematic term. Any suggestions for widely understood alternative language, I'd be pleased to consider it.

Finding Me - My Journey to Diagnosis

 When I go about the world, as a woman in my fifties, with three adult children I'm often challenged by people, who say "I'd never guess you were autistic if you hadn't told me". 

My common reply is "Well, you should have seen me when I was a kid!"

I was diagnosed with Autistic Spectrum Disorder (aka Aspergers Syndrome) when I was 34. My GP had been asked to refer any patients he had with mental health difficulties who didn't fit the 'typical' diagnoses, and who met certain criteria, to an Autism Research Centre in a nearby university.

I'm not sure what those criteria were, but I suspect my chronic anxiety, intellectual ability, accompanied by significant social difficulties, were factors. My mother had to go with me, as a witness to my behaviour as a small child; and it took two days. The goal, as the scientists explained to us, was to develop a quicker, more accurate means of diagnosing autism.

Early Life - Little Professor

Ever since toddlerhood I was an 'unusual' child. The expression 'Little Professor' which Hans Asperger coined in the 1930s, fit me to a tee - I had an encyclopaedic memory for facts, and would often avail adult friends and relatives with them, regardless of their interest (or lack of it). But I had little interest in my peers and found their behaviour perplexing and illogical. Adults were safer, although they too often acted contradictorily. Sometimes, for no apparent reason, they would get angry and say, "I don't want to hear another word about... [insert special interest]". 

I was happiest when allowed to hang around with a 'safe' adult, engaging in some intellectual activity. I particularly got on well with my grandfather, a man whose pedantry and narrow-mindedness drove everyone else insane. As I grew older, I started to see that side of him too, but as a young child, I liked the fact that he never demanded I be anything other than my 'little professor' self. My grandfather used to take me on nature walks, to visit eccentric relatives (of whom we had many) and on one occasion, to the National History Museum, where we eschewed the dinosaur exhibits for the backroom display on geology. Rocks and maps were my grandfather's passions. 

I started school relatively late for the times, at passed 5 years old. It did not go well. I couldn't understand the rules, which seemed to vary constantly - one minute we were to sit down quietly, the next we were supposed to speak, then we were supposed to 'play' (something I never quite figured out) and then, just as we were enjoying an activity, we had to stop doing that and go to the Hall for 'Assembly' - which involved sitting on the floor in a huge group and singing hymns (and it wasn't even Sunday!). 

In an attempt to get out of interacting with my teacher, I told her that I could already read. But when she discovered I had in fact memorised a reading book, she got angry with me. The thing is, I wasn't entirely clear what reading was. I was almost eight years old before someone took the time to explain it. 

So early school was perplexing, and I did make one or two friends - although I think my feelings were pretty superficial. I remember one friend joking to me that I treated her as a 'public leaning post', as I would lean against her in the playground to keep warm in the winter. 

By the time I was seven and in a different school, my inability to read and write was becoming a problem. I thought I was probably not as smart as my classmates, which didn't disturb me in the slightest, but I could tell it disturbed the adults around me.

Finally, a teacher decided to see how much I had learned, and quickly realised I did not know any phonics or any strategies to read and write at all. At the time 'whole word' reading was the fashion in teaching. I didn't even understand how to pronounce the individual letters of the alphabet, or how letters clumped together to form words. The teacher had been on a recent course and suspected dyslexia, but at the time, my parents were told "Don't mention dyslexia - they'll think it's a middle-class word for thick". 

Thankfully, she was able to teach me to read and my passion for reading started then. For most of my life, reading has been my escape from difficult reality. 

Secondary School - from Slow to Disturbed

By age eleven, I was in secondary school. I had quite a few schools due to my father's job, which necessitated frequent moves, but for me, starting a new school was all part of the routine. I liked some lessons, but for the most part, school was a strange alien world where I didn't fit in. I remember, when I was younger hiding under desks and in the stationary cupboard, not out of fear of bullies or whatever, but simply because it seemed more 'comfortable' than an open desk in a large, airy classroom. Child welfare people would often ask me 'why' but were never satisfied by my answers. But at secondary school, I realised that physically hiding got me into a lot of trouble. I heard words like 'disturbed' used of me.

Before my 11+ exam (an intelligence test used to determine a child's supposed suitability for academic 'Grammar School'), I had been thought a 'slow learner' or 'remedial'. I never understood why being in the 'R Stream' was considered a social shame, and since I was little interested in my classmates, their academic ability or lack of it was irrelevant to me. But then I had the tests and suddenly, I went from 'R' to 'A' stream. My overriding memory of that was that suddenly, I was expected to know French. That was not a good experience. 

From that point on, instead of teachers patting me on the head and not expecting much of me (which suited me fine), I was constantly being asked impossible questions about why I did what I did and how I felt. It was impossible because their premises were often so 'off' that the question was meaningless. On handing in an illegible piece of science homework, for instance, the teacher asked me what was happening at home? I randomly mentioned things that had happened at home that seemed out of the ordinary - my father had lost a glove and shouted a swear word, the dog had been sick on the doormat... random events that just seemed to perplex the teacher more and more. But not as much as it perplexed me, trying to figure out what on earth the teacher expected! 

It seemed that the teachers and I lived in very different realities, which while parallel, never quite intersected. Even in maths, one of my best subjects, my teacher despaired of my 'tortuous ways of reaching the answer'.

I never quite understood my education - it was all "Go to this room", "Talk to this person", "Be quiet", "Go out there and play with those children", "Fill in this form" and random "Let's now talk about Beethoven... or the Romans... or the melting point of iron..." in subjects that were considered weirdly separate, despite clearly over-lapping (in my opinion of the time). 

Looking back, the statement by psychologist Carol Gray that "No one will willingly follow a command that doesn't make sense" explains why I was such a compliant child most of the time, with sudden bursts of rebellion at others (the behaviours labelled 'disturbed'). 

Adulthood - 'Never enough'

As I grew into adulthood, despite my love of learning, my social difficulties lead to a disastrous attempt at university. Studying biochemistry, I broke most of the glass in my lab by the end of the first term; And broke quite a bit of general equipment too - entirely by accident. I fell asleep in many of the lectures; failed to get my lab reports in on time but wrote exceptional essays. And socially, I wasn't popular, and I was easily manipulated. So, although I had good friends, I was extremely vulnerable. 

Becoming unwell, both physically and mentally, I decided to drop out at the end of my second year. 

The years preceding my diagnosis, I attempted to get into various careers, but seemed to suffer from continual, severe stress, which often made me physically ill. I attempted to train as a nurse: I was good with the patients, and wrote essays my tutor thrilled over, but I was disorganised, sickly and frequently bullied by my peers. I worked in a laboratory, but my skills with glassware didn't improve and I was rapidly fired when I (accidentally) set fire to the paper towel holder. I worked in an academic library, where I seemed to fit in with the weirdly eccentric and academic staff, but the company failed, and I had to look for another job. 

I then went into computing, but despite having what was known as 'The Geek Syndrome', it turned out I wasn't terribly good at it. And my bosses despaired of me. 

In every job, the problem was both my alternative style of learning, with a pedantic need for detail (perceived as 'neediness'), and my lack of appropriate social skills. I would offend people. I was too blunt, too 'honest' (apparently not so much a virtue as I had assumed) ... I asked too many questions, I was too literal, I 'pestered' my bosses too often (because they had not given me clear directives).

So, when I flinch when people say, "You're so intelligent!" (Presumably meant as a compliment), this is why: to me it seemed that I was never enough. What was the use of 'intelligence' if you still got fired?

By then I knew that my social skills were awkward and inappropriate. I knew I talked too much but didn't seem to be able to control it. The way I expressed emotions was problematic for people (either too much and 'aggressive' or not enough and therefore told I was a psychopath!). I was told I spoke in the wrong way to superiors, as if I considered them equals. But I did know understand the 'right' way. Or understand why I had to acknowledge their superiority since they surely knew it already? 

In this time, however, I had learned how to make friends and had married - a mathematician (ie one of my 'tribe', I'd later conclude). And on giving up work to have a family, I became involved in parent support groups and made more friends. Socially, my life was going better than ever. I said at the time: I have no trouble making friends, but great difficulty making acquaintances. 

Despite the upside of having loving and loyal friends, and a supportive family, my self-esteem and mental health were suffering. The chronic 'stress' I had always suffered was now being identified by my doctors as 'Generalised Anxiety Disorder'. I no longer had work to worry about, but with three small children, all of whom turned out to have special needs (albeit milder in both my girls), I was drowning. 

Internet Friends & Diagnosis

It was the 1990s, and being an early adopter of the Internet, I went on the message boards to find kindred souls. Friendships that I developed then have lasted until this day, but there were also the 'flame wars' - written fights which would escalate into insults and resentments that would send me spiralling into self-hate and anxiety. 

Nevertheless, I found friendships in amongst the fights, and one of these friends, L, whom I 'met' on a mental health board, was to write to me one day and say "Hey, I've just been diagnosed with Aspergers Syndrome, and I think you've got it too!"

By this point I was on the hunt for an explanation for my difficulties, so had accrued quite a lot of information about conditions like ADHD, personality disorders, mental health conditions and Aspergers (which I knew to be a form of High Functioning Autism). But everything I read about autism at that point didn't sound like me. After all, I had friends! Lots of them! I was happily married with children and coping OK as a mum. I wasn't rocking in a corner, memorising birthdates and counting cards (I think Dustin Hoffman's portrayal of 'Rainman' has a lot to answer for). But L, being autistic I suppose, persisted. He was convinced I was autistic and gradually knocked down each of my objections. 

I first approached my doctor over the possibility I had ADHD. I still wonder about that as I'm a bit... well hyper. But the psychiatrist felt that no, I wasn't ADHD. He did suspect something neurological, he said. Looking back, I think he was hinting, but I've never been good at getting hints. 

So, it was sometime later I arrived at the Autism Research Centre of my local university. By then, I had joined an internet group called alt.support.autism and talked to many other able autistics ('Aspies' as we called ourselves) and had been convinced my initial feelings were mistaken, and that I did actually have autism. But my own certainty worried me - like many autistics, I rarely sense doubt about something I've reasoned out, even when it turns out I'm completely wrong, so I've learned not to trust that feeling of 'certainty'. Just because I think I'm right doesn't mean I'm not wrong!

The psychologist at the A.R.C. later told me that a majority of their patients turned up to the centre already fully knowledgeable about autism and Aspergers, able to quote chapter and verse of the diagnostic criteria, with arguments both for and against their diagnosis. Unlike many of his patients, I didn't present him with a dossier of psychological evidence, at the door, or quote his rivals in autism research back at him! 

He also told me, probably joking but I cannot be sure, that my autism was so glaring, he could practically diagnose me from the corridor. With today's controversies about the under-diagnosis of autism in women and girls due to our 'atypical' presentation (ie different to the boys), I suppose I am lucky that I fit the criteria so precisely, in a way that not many girls do. Still, 34 years a bit late. 

My mother cried. Not from sorrow, but from relief. For so many years, my parents had been blamed for my eccentricities and blamed themselves for 'mistakes' they made in raising me.

I was just happy. I had found my tribe. 

Just Be Myself? Congruence & My Autistic Self

A few years ago, a group of autistic friends and myself were joking "Just be yourself" as probably the single, worst piece of advice to give an autistic person.

The very fact we were laughing about it shows just how much we colluded with our own oppression - that the very idea of an autistic person just being themselves, their authentic, genuine self (what counsellor types call 'congruent') without any social 'masking', was ludicrous to us.

And even now, autism discussion sites are lively with discussions of how to 'get through' job interviews, how to disguise our autism when on a first date (so as not to scare the would-be romantic partner off), how to talk to social services so they don't think you're a danger to your children... and most common of all, how to not get fired because management feel you're just 'not a good fit'. 

You can wave the Equality Act 2010 in people's faces all you like - it's a fact of autism life that we are constantly told, virtually from birth, "Act like this, don't act like that..." which roughly equivalates to "Don't act autistic".

And if you are fired from your job, it won't be because you're autistic, it'll be because of the 'but', "You're autistic, but the real problem is you wind up the team" or "You're autistic, but it's because you can't show initiative - you have to be told exactly what to do, which is too much to expect" etc. 

As well as the social communication problems I'm describing here, it is important to remember that autism often carries with it difficulties in organisation (executive dysfunction difficulties) and sensory integration difficulties. All of those must be covered up or worked around if we are to be 'accepted'. 

Pretending to be Normal

And what if we break the rules? Because, let's be honest, most of us on the autism spectrum can't actually do this 'Pretending to be Normal' (to quote the title of Liane Holliday-Willey's excellent book on autism). I can do it for a job interview - but an hour into the first working day, it's all gone.

What happens is that all the 'acceptance' we may expect or be promised, turns out to be extremely conditional. Most often, its minor stuff like complaints you aren't showing initiative at work (not knowing the unspoken rules is a major problem); you're 'stand-offish' if you're an introverted autistic, 'too in-your-face' if you're the gregarious sort; even that your odd behaviour is alarming or threatening to people. At its worst, you may be bullied, even physically. 

To make matters worse, our social naivety and lack of social understanding often means autistic people don't even realise we are being unfairly criticised or bullied - going back to my comment on 'colluding in our own oppression', many of us have introjected the idea that we are the cause of the problem and that it is perfectly reasonable for people to get tired or annoyed at us. 

So why did my friends laugh at the idea of being ourselves? Because our experience is that that is an extremely dangerous thing to be. What is more, we are told endlessly that our behaviour is 'worrying' or even 'threatening' to people.

Many autistic people are also exceptionally, emotionally sensitive (it's a myth that we don't have empathy). We pick up emotions in the room - but because of autism we may not know how to process those emotions, how to understand where they are coming from... but we quickly work out that people are reacting negatively to our autistic behaviour or way of being. Ever the problem-solvers, and not wanting to cause others distress, we may conclude that the solution involves either 'faking it' (masking our autism) or removing ourselves from the room. 

Social avoidance is one method commonly used by autistic people. But there's a difference between liking your own company, and believing that since you cause people distress, you must be alone. The alternative is trying to 'fit in' in other ways: masking, appeasing, trying to be that perfect colleague or perfect friend to try to sooth others into acceptance. Both behaviours come from fear. 

Unachievable Conditions of Worth

I was reading an excellent literature review by Lisa Cromar, the other day, written from a Person-Centred perspective which includes the statement that autistic people are "often subjected to largely unachievable, externally imposed conditions of worth" (which for those of you not familiar with the Person-Centred approach means that acceptance is conditional on them achieving things they can't achieve). 

So, in other words, autistic people are told we have to behave a certain way to be accepted. But we aren't told the 'rules' of that behaviour (the more obvious stuff, yes, but so much is cultural and hidden, and changes according to obscure context). So we are trying to perform a dance, but we don't know the steps. 

So, for example, one 'rule' I learned was that people like it if you show an interest in them. But apparently, what I did was interrogate people! How do you find the balance between 'showing interest' and 'interrogation'?

And there is also the 'rule' that people like it if you are an open, and friendly person. In other words, you also have to tell them about yourself. But 'telling them about yourself' has very strict boundaries, context-dependent, so as not to break the first rule. So, for example, this does not include information on my sex life, my toileting habits or interesting medical procedures I might have had. And I've got to balance this with showing an interest in the other person - how do we time our interactions to allow space for each other? 

Going back to the emotional sensitivity, I often pick up that my behaviour or presentation is causing people some distress or confusion (I can't be sure which). I notice that people avoid me in breaks, don't want to swap email addresses, don't seem keen to work with me in group exercises... Sometimes it hurts. Other times I feel compassion for them - I can be a bit too much for people to cope with sometimes. They aren't nasty or unkind, just not used to me. 

To be honest, I don't really know where I'm going 'wrong', and in the past, that would have distressed me. I would have researched and investigated, developing hypotheses of what I could do to correct the 'problem'.. and giving myself a literal nervous breakdown in the process. It is exhausting having to cover-up your true self all the time. 

The Congruent Autistic

I have often written in my study journals, during counselling training, that I wonder what a congruent autistic would look like? What would I look like if I were entirely congruent? (ie my authentic self). The answers are probably not what my tutors wanted to hear!

If I were congruent, my social skills would be significantly worse. People would no doubt be alarmed at some of the things I said. My ability to have a mutual conversation, especially in groups, would be significantly impaired. Working in groups is an essential part of counselling training which is also the very worst part about it for me - in my autism utopia, I'd learn at the feet of a master (of any gender), one to one, until I was able to practice independently. But for now, that's not what the CPCAB [my exam board] would go for, I suspect.

I'd be even more outspoken than I am now. Some days, no one else would get a word in edgeways - except in skills practice or actual counselling, when probably because the communication is boundaried and the rules explicit, I have zero problem sitting and listening. I'd challenge my classmates and colleagues about whatever came into my head. Pretty much like this blog, actually. I would start a conversation about social justice as you came into work at 8am with a hangover, perhaps; or I'd argue with you, passionately, in a way that might look like I'm annoyed with you (but probably aren't); and when I was distressed or stressed, I would simply walk away. 

Unless, of course, there were clear rules about my interaction, and then I'd be fine. Lots of neurotypicals [non-autistic people, in this context] believe that there are clear rules when there aren't. For instance, I've just been on a training course with about 15 people. We had class discussions in which questions were asked and participants invited to respond. I spend the entire two days worrying I contributed too much but being torn because I felt I had useful things to say. It was an excellent course, but this was the reason I was a wreck each evening. 

But for some exercises, the trainer pointed to individuals and invited them to speak. That was bliss for me - I just spoke when I was pointed to, with no anxieties about whether it was appropriate or not. Life would be so much easier if there were more explicit rules about interactions!

Finding the balance

Clearly, I cannot act as if social rules didn't exist and just take over every conversation and completely ignore the needs of those around me.

The word 'autism' is, I believe, from the Greek meaning 'within oneself'. It is not true of most of us to say we are 'locked in our own world' and it is not that most of us are selfish or completely egocentric. It is more that the sensory overload and overly busy mind form an internal barrier that can be hard to break out of - it's like trying to have a conversation in the middle of Piccadilly Circus in rush hour!

So, either we just retreat to our inner world, which is safe and comfortable (albeit a bit lonely) or we smash our way out, externalising that 'noise' by metaphorically shouting at the world.

For me, finding congruence is about finding that balance between what would be most comfortable to me (letting it all hang out) and what 'works' in our neurotypical, not-very-autism-friendly world. But part of that is the realisation that for years, I've spoken and written about how to help autistic people 'pretend to be normal' - I've been trying to change us to fit in with you. That needs to change. Neurotypicals need to meet us halfway, and not make your acceptance of us conditional. 

Counselling Behind the 'Mask'

If you are a counsellor or therapist, don't expect your autistic client to 'drop the act', to show you their authentic self. The mask isn't living in denial, it isn't self-deception, it is a self-protection that we need to survive. And even if you succeed in persuading your client to trust you, that you will not judge them, that you like them (which is a more radical concept for most autistic people than it should be), your client still has to go out into that autism-hostile world and survive. 

In my view, the work with your client should be about finding spaces where they can drop the mask, safely, without horrible, negative consequences. Initially, hopefully, with yourself (the therapy room is the ideal place for such experiments) but then maybe with their friends and family. It is hard to make true friends when you are not your true self, but those 'excessive conditions of worth' may make it difficult for the autistic client to ever believe that. So, you have to be the person they can try that out on. 

This means you have to have to be secure in yourself (dare I say 'congruent'?) - you can't feel threatened that they know more than you, that they challenge your training, or your methodology, or display extreme scepticism. Autistic people get told a lot of stuff that we don't experience to be true - but we are frequently not listened to. 

I am reminded of a conversation I had with Prof. Simon Baron-Cohen a while back. He's a leading autism researcher and neuropsychologist. At that time, he was working on diagnosing people as part of his research. He told me he became entirely used to patients turning up with a huge stack of research papers, quoting him back at himself, and quoting academic rivals, and being quite combative, as he tried to diagnose them! 

The fact is, able autistic people often have the gift of phenomenal rote memory, are able to find patterns in a way many neurotypicals envy, and if your client is autistic in this way, you will never be the expert in the room. Better get comfortable with that fact.

You may also have to be questioning about everything you thought you knew about body language and facial expression. We may have 'blunt affect' (very little facial expression), we may appear angry (if you don't know us) when particularly passionate about something (a lot of us get very passionate about our interests), we may appear depressed when we're perfectly fine.

On the other hand, we may appear perfectly fine when we're not. I tend to show little if any outward signs of distress so even my therapist of two years didn't spot it. So it is important to ask, to check in with your client, without making assumptions e.g. "How are you feeling?" not (as has happened to me) "Why are you so angry?"

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So, in summary, how can I 'just be myself' in a neurotypical world? By doing it, but also educating those around me to understand my autistic behaviour so that they no longer find it scary and intimidating. This blog is one means. 

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. 

 

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.

My Autism Superpower: Seeing the Hidden Pattern

 I've said a lot in previous blog articles about the problems of being a counselling student with autism. But are there any advantages? In a conference the other day, I asked a question from the floor about training as a counsellor when you have autism. One of the organisers whispered to me, as she passed me the mike, 'Autism is your superpower!'

Sometimes, the difficulties of my ambition almost overwhelm me. In order to qualify as a counsellor, I need to succeed in the most difficult environment for me: in groups, with lots of distractions, and a majority of colleagues who do not understand my difficulties, or even doubt that I have them.

But of course the job I want to do doesn't involve coping with a class of 15 people or being observed while I practice 'counselling' a classmate who is pretending to be someone else. It sometimes seems ironically unfair, but that is how it is.

So, what do I do well?

1. Narrative ‘Rote’ Memory

Well, for one thing, I have an unusual memory. I can't remember my own bank PIN code which I've used for years, but most textbooks, as long as I get the gist of the theory, I remember most of it. Not word-for-word, but significant parts of the book I will remember from a single reading... friends joke that they try to catch me out with questions about things I can't possibly know anything about, and I can usually come up with something. Especially stuff I am interested in.

Autistic people like me have 'special interests' or 'perseverations' (from the same root as the word 'perseverance'). I have always felt that if I could direct this ability to develop an intense interest in something at will, I'd probably have a Nobel Prize by now. Unfortunately, the autistic brain’s searchlight settles on what it will, and we have to accept that. Or work with it. Fortunately for me, my special interest is people, so remembering what they have said (at least the gist) is fairly easy for me.

What I focus on and find easy to remember is the ‘narrative’ – maybe I’ll get specific details wrong, but I’ll remember the story my client has told me. I’ll remember the notable details and those odd phrases that stick in my mind. Like the example I gave in a previous article, where someone mentioned, in passing, having a new boyfriend and then mentioned that they had been divorced. Instantly my brain will fix on those two facts and try to find the connection (if there is one).

And this is my real ‘autism superpower’: pattern matching.

2. Pattern Matching Humans.

Many people are familiar with autistic mathematicians or computer experts. In fact, it is a bit of a TV and movie trope: the autistic genius who can do anything with a computer but doesn’t understand people. There was even a Bruce Willis film a few years ago, called ‘Mercury Rising’ about a kid who was so good at pattern matching, he could decode anything (including the supercomputer invented to save the world, of course).

In real life, our pattern matching skills might be less impressive, but they are also not confined to computing and maths. I did in fact train as a computer programmer at one time. Turned out, I was adequate, but not much more than that: Definitely not gifted.

These days I prefer to just use a computer and not worry about how it works! It took me many years to realise that my pattern matching abilities weren’t actually turned towards machines and maths. Instead, I ‘pattern match’ people.

It is a fundamental belief in psychology that human behaviour is, at its heart, logical. Even ‘mad’ behaviour could be explained (maybe in terms of brain chemistry awry, or learned behaviour to cope with trauma, being expressed in inappropriate situations). I firmly believe that (although they say we know more about the surface of the moon than the human mind, at this point in history). Maybe one day we’ll have mind-reading machines?

In the meantime, we have to go by ‘clues' and the flawed method of talking to people and listening to what they say. Like any neurotypical, I can’t say how I can guess right how a person is feeling, when I do get it right.

I am presumably doing a lot of observations and calculations subconsciously. Probably this is me using my pattern matching abilities: comparing their body language with body language in known situations; memorising phrases and ways of talking I've heard before and linking one thing they say (“new boyfriend”) with another thing they say (“divorce”), developing my hypotheses, and then looking for further clues to support those hypotheses.

So maybe I’d guessed their feelings about their divorce were tainting the current relationship? I’d then look for clues to support or contradict that hypothesis.

Autistic people like me tend to process non-verbal communication in a very conscious, learned way. I like to describe it as having a ‘database’ of behaviours on which I can draw. My rote memory can rapidly compare and contrast what I’m seeing in front of me with past experience and make accurate guesses.

It is important I do not mistake my ‘guesses’ for absolute fact. They are only working hypotheses until the client gives me their view on them. But often, I have found that people are surprised and say “Wow, I think you’re right! That is what I mean!”. Other times they may agree with me, but not be ready to hear it; or they may totally disagree with me and find me completely wrong.

However, provided I am sufficiently 'tentative' (as Carl Rogers recommends) even disagreements can provide excellent fodder to work with. It provides me with more information about the client's point-of-view and facilitates better communication in future. I tend not to forget when I’ve been corrected. I also find a humble counsellor is one a client finds easier to trust: If I get it wrong and have no problem admitting that, then the client knows they can argue with me safely, without upsetting me.

3. Focus = Really Paying Attention

My final autism superpower is paying attention.

I have written previously about how hard it can be to pay attention to anything, in a big room, full of people, traffic noises, air con, a watch ticking, a mobile phone vibrating… Sensory overload.

But when I am able to be quiet and still, such in a counselling room, my focus can come into its own. When I am focussed on someone, I am completely focussed. And such focus, with active listening, is a powerful thing. Particularly when so many clients presenting for counselling, especially the autistic ones, have experienced not being heard, not being paid attention to.

As an autistic client myself, this is my overwhelming life experience: that of not being really listened to. Like many autistic people, I tend to be pretty direct and literal when I say things. So, if I say, “I can’t do that”, I mean I can’t do that. Not that I lack confidence, or I’m being stubborn, or attention seeking. I probably mean “I lack the information I need to complete this task”.

With all clients, especially autistic ones, really paying attention to what they say, and how they say it (being aware that often autistic people have atypical body language and ‘blunt affect’ ie little expression even when highly emotional), is an important skill in counselling. So given the right environment, my autism can mean a client, who finds it difficult to feel heard, can finally experience that.

Autism, and What Psychotherapy Can't Do

In the 1940s, Leo Kanner, the psychiatrist who first coined the term 'autism' postulated the cause as cold, intellectual mothers, nicknamed 'Refrigerator Mothers". This idea was then further developed into the 1970s by Chicago professor Bruno Betelheim who perceived autism as a psychological disorder in children, caused by mothers he compared to Nazi camp guards (as a child, Betelheim had spent time in a concentration camp and compared such children to camp survivors).

These days, it is accepted that autism is a neurobiological, lifelong, developmental disorder, with almost certainly originates before birth. Autism is how our brains are wired; it is not just a difference in our psychology, it is not a psychiatric disorder, it is not an emotional disorder and it is not caused by cold parenting or subconsciously hostile mothers.

Well, I say it is accepted... there are some hold outs in the world of counselling and psychotherapy.

Only the other day, I came across a psychotherapist talking about the 'controversy around autism', by which they didn't mean the controversy over how badly treated autistic people are, or how far we need to go to get total acceptance, they meant the 'controversy' over whether High Functioning Autism existed as a disability at all! The myth of autism as a mental illness persists.

I have yet to find a psychotherapist or counsellor who will admit to this directly, however. Maybe they are worried I’ll ask them for evidence of their theories (there isn’t any) or maybe they don’t even realise this is what they’re thinking? On the other hand:

• *A trainee asked me "Yes, but surely, with therapy your autism should improve, shouldn't it?"
• A fully qualified psychotherapist said to me "I'd be interested to know why you cling to this concept of yourself as autistic?".
•  I was contacted by another, offering to introduce me to someone who had 'recovered' from their autism.
• And most common of all, people who have self-diagnosed themselves with autism (usually shy, introverts who resemble the stereotype) and later declared themselves cured! (Such people rarely accept an extrovert like me as autistic).

Not Fitting the Stereotype

I don’t fit their stereotypes: I’m not introverted, I like people, I enjoy socialising. I often wonder how confident I’d be in my diagnosis had I not been diagnosed by a world-renowned neuropsychology professor who said I was absolutely typical for high functioning autism.

So, what am I doing that leads people to doubt my mental health? Some of my neurotypical friends suggested the following:

1. My body language, tendency to talk a bit too fast and a bit too loud, and my obvious effort to ‘track’ large groups (hard work!) can be mistaken for anxiety by people who don't know me.
2. Tendency to be extremely open and honest about how I'm thinking, and feeling can be somewhat startling to people, who may experience false empathy. For example, I say, “I’m worried…” and they think “Wow, I wouldn’t say that unless I was really, really worried” [Note: neurotypicals often feel it it polite to under-state their feelings and only mention them if seriously pressing.] But unlike neurotypicals, I am not understating, I’m saying it how it is. And I’m probably only saying it now because you asked me how I was feeling! (see ’Can I be honest with you?’ below).
3. I can be muddled and disorganised. It's called ‘executive dysfunction’ and is a little-known feature of autism (also found in dyslexics). It is part of the way my brain works, but since neurotypicals can get like this when stressed, it adds to the assumption is I’m seriously stressed! But no, I’ve just lost my pen and am distracted by looking for it, that’s all. No biggie.

So false empathy may lead people to mistake a mentally healthy autistic from a mentally unwell neurotypical. But that false empathy is underpinned by the myths peddled by Kanner and Bettelheim, who offered psychotherapy as a cure for autism.

In their day, the psychotherapy was offered to the mothers (I shudder to think of the harm that did); these days, the autistic person themselves may be offered psychotherapy for their ‘mother issues’. But in neither case did it change one jot of the person’s autism, it just increases the social pressure on the autistic person to ‘perform’ neurotypically, if they can.

Finally, as a lesbian woman I am struck by the similarities between this and this dismal history of psychotherapy and homosexuality. To this day, there are so-called ‘therapists’ who claim to be able to ‘cure’ homosexuality. It destroys lives and leads to incredibly low self-esteem, depression and anxiety. And for all that, it doesn’t even work! All it does is encourage a person to hide their true self.

This is why all of the major mental health professional bodies – the British Psychological Society, the Royal College of Psychiatrists, the BACP, the NCS, the UKCP... have signed agreements, such as the Memorandum of Understanding published by the BACP, banning so called ‘Conversion Therapy’ being offered by their members.

Counselling LGBTQ+ people should be about helping them become comfortable with who they are, not trying to change them. Likewise, counselling autistic people should be able helping them be a ‘fully functioning autistic person’, not trying to change them into neurotypicals (firstly, that would fail, and secondly, in failing it signals to the autistic person that who they fundamentally are, is flawed, broken).

Maybe we need a Memorandum of Understanding for autistic people?

Of course, there is not an exact equivalence between sex and gender diversities and being autistic. Many autistic people may have behaviours they wish to change, which are causing them difficulties - behavioural therapies, applied sensitively and respectfully may be useful interventions.

And autistic people are more prone to all sorts of mental health conditions than the general population – growing up autistic is a neuro-conforming society is a strongly ‘adverse event’ But it is essential counsellors and therapists know what is possible, and what is desirable to achieve – and don’t fall into the trap of colluding with those who demand autistic people conform, no matter what the cost.

I can’t tell you how many times I’ve known autistic people to present for therapy to ‘fix’ themselves after they’ve been bullied. The wrong people are in the therapy room!

As for me, I have had years of being told to go into therapy because clearly, I had mental health problems. No sane person could be like me! So I went into therapy, and a couple of years later, I’ve realised I’m mentally very resilient and I’ve finally started to question the assumptions that better = neurotypical.

I am embracing my autism. Which wasn’t exactly the result my naysayers expected.

Can I be Honest With You? Autistic v. Neurotypical Honesty

 One of the first things you learn in counselling training is the necessity of 'congruence', which roughly translated is about being honest and being your true, authentic self in front of clients - not putting on a front.

So from the start, honesty and openness is promoted as 'the way' to be a counsellor. Which gets confusing when, as an autistic person, you discover that 'honesty' isn't quite what you'd imagine it to be. In fact, to me, if feels as if neurotypicals rarely say what they mean. Thus, even a statement like "Be honest" has to be filtered through my experience of what people actually mean, rather than what the words seem to mean.

For example, a tutor may ask me to say what I think about the course. This is a potential trap - what if I said everything I actually think, including the things which I know are probably unfair, just passing thoughts, or a faulty impression.? I wouldn't want to be unfair or unkind! But if I only say the good stuff, that won't come across as truthful (and probably isn't entirely). So clearly some negative statements are expected. It is hard to steer an appropriate course.

The irony, of course, is that few neurotypicals are aware of their 'lack of honesty' - it is second nature, mostly unconscious and invariably done for the best of motives.

Being that 'honest' is contrary to other counsellor values about mutual respect, empathy, unconditional positive regard etc. But it is confusing for an autistic person to work out how 'honest' is honesty?

I recently met a very experienced counsellor who had come a cropper with an autistic client on the issue of honesty. The story I relay is a dramatization of the actual conversation. I've had to take a few liberties to disguise identities and also because unlike this counsellor, I am not experienced (so any errors are probably mine). This counsellor is mostly person-centred, using a few other techniques eclectically.

His client arrived and sat down. They exchanged the usual pleasantries and basic 'contract' (all the stuff about fees, cancellation policy, confidentiality etc) and then the counsellor said, "What would you like to talk about today?"

The client frowned. "I don't know. What am I supposed to talk about?"

The counsellor, putting his best Person-Centred hat on said "Well it's up to you. You can talk about anything you want to talk about."

So, the client said "OK".

The counsellor sat back, expecting to hear about the client's 'presenting issue'. Instead, the client launched into a detailed critique of Netflix Star Trek versus the original TV series.

He tried to waylay the client subtly. "I was hoping you'd talk a little more about how you are feeling..." he said.

"This is about my feelings!" the client exclaimed. "I'm feeling upset about what Netflix have done to Star Trek!"

"OK, so you're upset?" the counsellor reflected. He admitted to me he had been hoping that the client was using Star Trek as some kind of metaphor or symbol for his emotional issues. The client, however, hadn't read the memo.

"I'm upset about..." he began, listing in detail (as only an autistic person can do detail) his grievances with the new show's writers. Realising half an hour had gone by and he'd so far only learnt about Star Trek, the counsellor tried to explain how counselling was 'supposed' to work, in a very person-centred way.

He added, by way of explanation, "You see, I don't know much about Star Trek..."

Which was fatal, as the client then felt he had a duty to educate the counsellor about Star Trek lore (this is what talkative autistics like me do if someone says they don't know something - fix the 'problem' of them not knowing).

By this point, the session was so far off beam from client or counsellor's typical expectations that the counsellor was forced to jump out of his client-lead, Person-Centred model and actively interrupt the client.

"I think we need to go back a few steps and talk about what your expectations are for counselling, and what I can offer you," he said. And then he had to explain his methodology, in more detail than he generally had to do for his students, let alone a client.

The client asked a lot of questions about his approach, the pitfalls, the counsellor's expectations and clarified "So when you said I could talk about anything, you didn't actually mean that?"

The counsellor was forced to admit, he really didn't. "So, what should I talk about?" said the client.

Picking at random from the original referral form, the counsellor asked the client about his anxiety issues. "Ah well they got worse after an incident at work. Would you like me to tell you about it?" said the client.

"Yes," said the counsellor, "I think that would be a great place to start".

***

I share this story because it perfectly illustrates how neurotypical 'honesty' is framed by expectations and limits that autistic people cannot take for granted. Low support need people like myself do not have low support needs because we don't think this way. We are not neurotypical. We have low support needs because we're learned to 'translate' what is said, into what is meant.

So, when I'm in college and they say "Be honest. Say what you really think", please don't blame me if I think "No way".

Because "what I really think" is probably ephemeral, or irrelevant, or inappropriate, or the verbal equivalent of an intrusive thought. The world is not generally ready for autistic levels of honesty.

So, can I be honest? If you say yes, don't be surprised if you get it with both guns blazing.