Autism is Everywhere!

The other day I got particularly fired up after reading a newspaper article suggesting that autism in UK was being over-diagnosed. Apparently it's the trendy thing these days! The article absolutely infuriated me because in my day-to-day life what I am confronted with is not over-diagnosis, but people who suspect they are autistic, but have yet to get a confirmatory diagnosis; adults diagnosed late in life, after years of damage has been done due to misdiagnosed mental health conditions; and parents of children with difficulties that are clearly autism, or something very like it, but are stuck in huge waiting lists waiting for assessments. 

We have to be careful about basing our assumptions on what we see around us - autism is my 'Special Interest' as we call it in the autism world, so of course I notice it more than perhaps other things (I've been known to walk into lampposts because I've spotted a child across the street and am wondering if they're autistic, from their unusual behaviour). But in this case, the statistics bear me out: In the 1930s when Hans Asperger first identified a form of autism we later called Aspergers Syndrome (later merged into a more general diagnosis of Autistic Spectrum Disorder), he estimated that it occurred in about 1% of the population. 

Later research by people like Prof. Lorna Wing, in UK, in the 1980s, confirmed this assumption and demonstrated it affected between 1-3% of the population. Later studies put it as common as 1 in 36 people [citation needed]. Population studies where they take thousands of people, at random, and investigate them for signs of autism, such as the Millennium Cohort Study 2000 (aka "Child of the Century Study" which investigates over 19,000 children born in 2000) have confirmed these estimates. 

The significant point is that study after study, since the 1930s, are coming up with similar figures, in numerous countries. Hence, we currently estimate that approximately 1-3% of the population are on the Autistic Spectrum. 

It is not true to say that "Everyone is a bit autistic" - autism is a spectrum condition (it varies hugely in individual's strengths and weaknesses) but still, there is a clear cut off between "eccentric" or "nerdy" and actually autistic. That cut off is the point at which autistic traits impinge on a person's life, in all areas of functioning: home, work, school, social life etc. So, for example, I was diagnosed with autism because I struggle with all of those aspects - even though I have a great family and lots of friends, it has been hard work to establish those relationships. It takes me a lot of work to build friendships and work/school relationships are even harder. 

This 'impairment in social functioning' criteria is a little context dependent however - a while ago I heard a talk by Prof. Simon Baron-Cohen in which he said that many Oxbridge dons in maths or physics showed significant autistic traits, but did not seem to suffer from much impairment - they lived in college, were fed meals by the refrectories, had housekeepers to tidy their houses, their laundry done for them... or they were married and had spouses who did that for them. Baron-Cohen's hypothesis was that Oxford and Cambridge colleges may represent, in some ways, the perfect autistic environment for these highly accademic individuals.

But to my mind this perfectly illustrates the Social Model of Disability, which sees disability as something done to an individual with impairments, by a society which only sees one way of doing things. So, for instance, a wheelchair user is 'disabled' by architecture that does not include ramps and wider doors because the architect and planners do not consider the needs of people in wheelchairs.

In a perfectly adapted, accessible world, being a wheelchair user would arguably be a lot less difficult ie less disabling. So, an autistic individual, in an autistic friendly enviroment, like a Cambridge maths department, is still autistic (although it might be harder to prove and give them a formal diagnosis). The diagnostic criteria however are based on a 'typical' environment and in my experience, typical environments are not at all autism friendly. 

So even if 1-3% of the population are autistic, perhaps it is still over-diagnosed? After all, it seems like every other person claims to be autistic these days! Well, no. The number of diagnosed autistics in the UK at the moment (ref. Ambitious About Autism, NAS etc) is 100,000.  The number we'd expect to find? Between 700,000 and 2.1 million cases. It is clear that at best, we are picking up 1/7th or 14% of actual cases. In no universe is that over diagnosing! 

The article implied that teachers and parents were pathologising kids who were just a bit different or excusing bad behaviour and bad parenting. Which was extremely offensive to those of us on the autism spectrum, and parents of autistic kids (I'm in both categories). But perhaps the worst thing about the article was the way it pathologised autistic people and bought into all the horrible myths that should have died out years ago: of autism as invariably profound impairment; as autistic people who are 'not like us', tragic, suffering... and most of all, rare. 

So why would the paper want to print an article, not backed up by decent science, which contradicts pretty much every study? Because it's 'controversial' and therefore attractive to a paper trying to get more readers? Because it buys into readers' prejudices that there is just too much autism about these days? Or perhaps, just saying, that the idea of 2.1 million people demanding better services for autistic people, more support in education and employment, more money in the NHS for diagnosis and post-diagnostic support... Maybe the idea of hoards of us, many of whom can vote and can protest our ill-treatment, is a little bit terrifying to the Powers that Be?

Jack - Autistic Before His Time?

John Percival Kenneth was my maternal grandfather. More commonly known as ‘Jack’. My mother describes him as an overly strict and critical parent, but as a grandfather, he indulged me. It was as if we spoke the same language.

Born prematurely, Jack survived his twin, who was stillborn. He told me that his mother was told to take him home as “this little one is not long for this world”, and how she kept him alive feeding him formula through a fountain pen filler.

It is difficult to know how much of this story is true, as Jack was prone to exaggerations and fantastical elaborations of his life story; Never to harm another person, but perhaps for entertainment value (grandfathers do, traditionally, tell tall stories to their grandchildren) or perhaps because he liked to sound more heroic. He didn’t lack self-esteem – in fact, to many people he had an over-abundance of it.

As he grew up, one of the youngest of ten children, Jack continued to have ‘difficulties’, which were never properly described. He assumed health issues; knowing him as we did, the family suspected behavioural issues. He was continually being sent home from school, but never remembers being ill for any of these exclusions. When we asked about it, Jack reported how his mother would tell him how the doctor had told her “I’m afraid this little one is not long for this world” and tell us, again, about his premature birth and how his mother had 'saved' him. At other times Jack would casually mention his 'leg shooting out' and how he 'kept falling over'. He gave the impression of an exceptionally clumsy child who struggled to hold a pen or play sports. We felt this situation was furthered worsened as Jack was left-handed, so teachers would tie his left hand behind his back and forbid him from writing with anything other than his right hand. To the day he died, Jack was unable to write legibly. 

Jack’s mother was often absent from the family as she was an enthusiastic Baptist preacher. So, he was left in the care of a sibling, barely 5 years older than himself. His father, it appears, was rather Victorian in his approach to children, having little or nothing to do with their upbringing.

On the few occasions where he was in school, Jack boasted that he was so bright “They allowed me to sit on the front row, right next to the teacher’s desk”. He said he often knew the answers to questions and would be so keen to shout them out, but his teacher would say “No Jack, let the other children have a chance to shine”. Knowing what I know now, I strongly suspect Jack, who remained barely literate all his life, was a somewhat over-enthusiastic ‘sharer’ in class. Also, he could never sit still, but twitched and fidgeted constantly (behaviour he continued throughout his life. ADHD perhaps?).

Another difficult trait he had, even as a small child, was that he would correct people if he thought they were wrong (Jack rarely worried that he, himself, was mistaken). And by 'people', I include teachers, parents, seniors... rank or superiority was irrelevant as far as Jack was concerned, if he was right and they were wrong! So, unable to cope with Jack's behaviour (or possible health problems?), Jack was sent home, blaming frailty; an excuse the family were only too keen to swallow.

From his teens, my grandfather was set to work with his father's small business. He did this for a number of years, never exactly thriving, before joining up with the fire brigade just before war broke out. My mother says she cannot imagine a worse job for Jack than being a firefighter, since he had literally no skills in teamwork. People often took against him and found him difficult. Jack was pedantic, very judgemental, obsessive, anxious and always right – the trait that got him into the most trouble. But perhaps a lifetime of being told he was ‘fragile’ attracted him towards a job that required just the opposite?

My grandfather was saved from consciption during the war because of his reserved profession, but arguably, being a fire fighter in the London docks during the Blitz was even more dangerous. When the air raid siren went off, civilians ran for the shelters and he and his team would head outside. He used to reflect, sadly, that despite his bravery, the only medal he ever received was from the RSPCA, for rescuing a stray dog from a chalk pit.

After the war, Jack's career in the fire brigade did not go much better, due to his difficulties in working in a team and getting on with the other fire officers, although he was kept on as an instructor. He was good at memorising facts related to firefighting and fire-safety, and in the days before the Internet, I’d imagine his encyclopaedic memory could have been quite an asset. Unfortunately, as he could barely read and write, he never could pass the seniority exams.

Jack's career in the fire service came to a rather unpleasant end. One day, sometime after the war, he was heading-up an exercise on the river with bikini inflatable craft. There was a collision between boats, and one boat hit bridge. Nobody was hurt but the owners of the boats sued fire brigade. They claimed negligence and there was a big court case.

Even though it wasn't Jack's fault, he took it hard, suffering a kind of mental breakdown. The family rarely spoke of it, except to say that Jack had 'a difficult time', but he did mention having Insulin-coma therapy, among others, which was an early treatment for severe depression. Sounds pretty dangerous to me! But I suppose they didn't have antidepressants then. 

Then a colleague reported Jack's mental health difficulties back to the boss, and as a result, the boss recommended that Jack leave. At the same time, Jack's doctor was expressing concern over his chosen career, saying, 'With your personality you would always find it difficult to cope'. So, Jack left, turning instead to a career as a factory Fire Safety Officer.

Jack's biggest issue, in the Fire Service and afterwards at the factory, was how he antagonised his work mates. One man particularly hated him. Jack’s religious judgementalism – especially regards alcohol and swearing – stuck in this guy’s craw. Instead of backing off, Jack decided that the man needed more 'Christian love'; so, when the guy had a heart attack, Jack demonstrated this ‘love’ by visiting him every day in the hospital, no doubt berating him about how his lifestyle had led to this situation. Eventually, the nurses were forced to intervene as Jack's visits, they said, were hampering their patient’s progress.

Despite his social and work difficulties, Jack was heavily involved in his Baptist church, where he was Deacon; and the Gideon Bible Society (the organisation who put Bibles in hotel rooms). Jack enjoyed the meetings and distributing Bibles, relishing the responsibility and the chance to be respected. But most of all, perhaps, he loved the structure and the rigid moral code which gave him a sense of rightness in the universe. He wasn't a zealot, but he did have a rather black-and-white view of the world.

Apart from church activities, Jack also had quite obsessive, and life-long interests in map reading, rocks, walking, photography and mountains. He would read maps the way other people would read novels, imagining himself walking through the terrain and planning walking holidays. On these holidays, he would collect rocks and take photos of mountains - preferably treeless ones as "trees get in the way of the view", as he would say.

Jack always wanted to share his interests with others, so it was that one day when I was 5 years old, he took me on a trip to the Natural History Museum. Eschewing the dinosaur bones and stuffed animals, he took me right to the back of the geology department, where a friend had given him a key to the storerooms. The room was just full of drawers and cardboard boxes with rocks in them. As my grandfather busied himself staring at a variety of rocks and scribbling illegible notes, I busied myself, happily opening drawers and fiddling with latches. 

I suspect my grandfather shared my love of fiddling with things and searching draws - after he died, my mother and uncle discovered he'd built in secret cubby holes to hide cash, hidden compartments in furniture and in the kitchen with five pounds here and ten pounds there. We never knew if we'd found all of the secret cash!

As a child I was close to my grandfather, which used to perplex my family, especially my mother, who had experienced his Victorian parenting style, without much fun or laughter. As a grandfather he was much more relaxed and pretty much treated me as an equal - or co-conspirator, if we were doing something my grandmother didn't entirely approve of. It was a slight issue that my grandfather didn't seem to understand that I was a child and maybe a 4-hour hike (at speed!) was a bit too much at 6 years old. So, he pretty much treated me as an adult.

I was later to wonder if we had more in common than just DNA? During my diagnostic interview for autism, which lasted several hours, we talked about my grandfather, and how people had often remarked on the similarity of our behaviour. As a teenager, being compared to an annoying, eccentric old man did not make me happy. We are pretty sure now that my grandfather was autistic.

And in his eighties, my grandfather told us his neurologist had indicated that Jack probably had Tourette's Syndrome. Tourette's can be co-morbid with autism, and along with the tics that Jack experienced, Jack experienced the Tourette's symptoms of hyperactivity and obsessive-compulsive behaviour.

My grandfather was just one example of the 'eccentricity' said to run in my family. An eccentricity which included an ancestor, who, having fallen out with every other church in the town, due to his controversial views, ended up starting his own religion. It foundered, sadly, like all of his other endeavours. 

I am pretty convinced that even though 'Autism without Intellectual Impairments' (aka 'Aspergers Syndrome') only became an official diagnosis in UK in 1993, thanks to the work of the late Prof. Lorna Wing, it's been in my family since at least 1919 (when Jack was born) and probably way before that. Autism isn't a new phenomenon, and like an iceberg, there is far more of it than is officially recognised with diagnoses etc. Jack and I are just too individuals in a family tree peppered with neurodiversity. 

Disclaimer

I wrote these blogs between 2019 and 2020, before the Pandemic, when I was studying to be a counsellor. They are my exclusively personal opinions and perspectives and should not be taken as expert advice. I have no qualifications as a clinical psychologist or medical doctor. If you have concerns about your mental health, or wish to seek an autism diagnosis, please consult the appropriate medical professional or clinical psychologist. 

Anxiety - Living with Autism's Best Mate

Long before I was correctly diagnosed as autistic, I collected a variety of mental health diagnoses:

• Generalised Anxiety Disorder (GAD)
• Obsessive-Compulsive Disorder (OCD - ruminative type, aka 'Pure OCD', where most of it is just thoughts not actions)
• Post-Traumatic Stress Disorder (PTSD - from extremely traumatic health events in childhood, plus subsequent traumas).
• Anxiety & Panic Disorder
• Clinical Depression.

Most of these labels relates to an anxiety difficulty, which is incredibly common with autistic people. As an autistic woman I'm probably lucky I didn't get that common misdiagnosis of Borderline Personality Disorder (BPD). As it is, those labels are still on my medical notes - they are useful, albeit slightly disingenuous since almost certainly, the behaviour labelled 'anxiety disorders' is probably just ordinary autism, in the wild (and undiagnosed for 34 years). A problem is never easy to deal with when it's been misrepresented for years! So, what I experience probably isn't entirely anxiety disorders (although living with undiagnosed autism for 34 years has undoubtedly left its scars), but it is anxiety, like the vast majority of autistic people live with. 

Autistic Triggers for Anxiety

1. Social anxiety. Not the mental health condition, 'Social Anxiety Disorder', but simply because social behaviour is more conscious for us on the Spectrum and we have to work harder at it, with a greater propensity for mistakes. I cannot recall the number of times I have said to people "I have a Social Communication Disorder" only for them to criticise me for some social faux pas, inappropriate joke or other misunderstanding, declaring that this had "Nothing to do with autism". 

One poor woman I encountered had been told "Autism is no excuse for rudeness", which involves so many misunderstandings of her situation, I don't know where to start! (And no, it's not an excuse, but it can be an explanation). 

Autism is a Social Communication Disorder. Social communication includes being able to work out in which context a joke is funny and when it is offensive; when arguing is fine or even welcomed, or when it is considered 'aggressive'; when words are OK to use with the 'in' group, but not outside. Consequently, if you want to understand what a Social Communication disorder looks like, consider how you feel when someone says something offensive to you, without any obvious motives. That's what it looks like.

2. Executive Dysfunction aka 'Being very disorganised, bad at timing, prioritising etc.' I've always found my poor executive function very disabling, but it wasn't until recently I learned that it is the number 1 cause of anxiety for a lot of autistic people. Being constantly late (or early), forgetting things, mislaying things, forgetting birthdays, people's names, important meetings... this can cause a lot of daily stress.

The other day, for example, myself and an autistic journalist were quite proud of ourselves for getting ourselves to the café at the correct time for our meeting - only to discover we'd messed up on the location! He was in one town, I was in another, at the same chain café! 

3. Sensory Dysfunction & Overload. Autistic brains are unable to filter our extraneous stimuli, so we notice every sound, every image, the sunlight flickering through trees, the hiss of the coffee machine in the café, conversations across the room, just beyond our hearing, flickering florescent lights, buzzing air conditioning, traffic... My brain notices each and everything so concentration can be a nightmare. 

And don't forget, as per an earlier blogpost, senses are not just sight, hearing, touch, taste, smell... our eighth sense of interoception helps us monitor our body's wellbeing. Being unaware of the need to sleep when we're tired, eat when we're hungry, drink when we're thirsty etc. can also put a strain on the mind. How many of us feel stressed and out of control simply because we haven't had enough sleep for a few nights? For many autistic people, problems like insomnia can be chronic. 

4. Cognitive Overload. The inability to filter out stimuli also applies to our own internal stimuli. For years, I struggled to understand the meaning of the term "Over thinking". Apparently, it was a thing anxious people did, and non-anxious people didn't do, but it made no sense to me. In the end, I realised that it's because what a neurotypical calls 'over thinking' is actually normal to me! I cannot not "Over think", it's the only way I think. It means I am aware of every detail, every nuance of everything I think about, all the time. Seeing the relevant details in the midst of the chaos, is tricky (or as NTs would say "Seeing the wood for the trees"). There are a lot of trees!

5. Adverse Experiences. Of course, many people (including many who read this blog) have experienced adverse experiences, some horrific, but for autistic people, those adverse experiences can be persistent micro-aggressions and repeated 'Othering' (Social science term - means making you feel different in a bad way and excluded). And for autistic people of colour, autistic trans and non-binary people, and autistic people with additional needs, and all combinations of said, racism, homophobia, transphobia and ablism simply add to the pressure. 

For myself, I have repeatedly been asked to leave jobs because I didn't 'fit in' - including a number of voluntary jobs. I am socially naive so get taken advantage of constantly. People lose their temper with me - but rarely do I see it coming, so it is traumatically out of the blue for me. I have had many friendships which are entirely one-sided on their part - I have unintentionally bought a friend's carpets (she used my credit as she was unable to credit herself, she said), I have written articles for people who have published them in their name, I have done research for people without pay or reward, but because they were a 'friend', only to discover they didn't even like me! Socially and emotionally, I can feel battered and unable to defend myself.

It is not just the overt bullying, but the breaches of trust which cut deep. I've had a lot of therapy - that helped - but time and time again in my sessions with my therapist, we re-discovered how often I haven't been valued by people around me. Even though I have some amazing and genuine friends these days, the adverse experiences of the past can still inform my anxiety. What if it happens again? How can I defend against it when I am unable to see the danger coming? 

Help to Cope with Anxiety

It seems today I'm doing my favourite thing: making lists. So, here's another list of the things I find helps me cope with chronic anxiety. And I won't put No.1 'Make a list..."!

1. Look after your body. Seems simple, but to an autistic person with interoceptive difficulties and organisational difficulties, making sure you eat right, sleep right, avoid dehydration etc. And don't drink too much alcohol! It makes anxiety worse in the long run, even though it might appear to relax you in the short term. 

2. Do something you enjoy. A lot of autism books will talk about 'Special Interests' or 'Perseverations' - autistic 'obsessions' we get really into, like Star Trek, or trains or horses. But what a lot of people don't realise is that employing our autistic focus and attention to detail can often silence all that 'noise' in our heads from sensory and cognitive overload. If you want to help an anxious autistic friend, let them talk to you about their special interest, and listen. It might be a bit boring for you, but you'd be doing them a great favour. And maybe it wouldn't be that boring at all! 

My special interests include writing this blog. I started it initially because writing, even about stuff like this, takes me out of myself and silences all that 'noise'. 

3. Do something creative. In the bad old days, of just 10 years ago, the autism diagnostic criteria cited "Lack of imagination" as an autism trait. The experts tried to fudge that by saying they were talking about 'social imagination' (whatever that is) but the truth is, autistic people can be just as creative as NTs, sometimes more so. 

I do watercolours and crochet myself, and I enjoy DIY, but you may enjoy something less traditionally 'creative'. My son, for instance, writes software for fun. My other half is a mathematician and tells me that 'true maths is a creative process'. I've been told the same about chess, but I'm not sure I really 'get it'. Nevertheless, find creativity that speaks to you, whether its art, music, writing... or solving maths equations. 

4. Meditation Is it just me or did I hear a collective groan across the Internet? Yes, anyone with anxiety is advised to meditate, and I've been studying Buddhist meditation about 10 years, since a psychologist recommended it to me. But not everyone enjoys sitting still or chanting for hours, and if you've a very active brain, it is going to take you years to perfect it even if you start now. 

So don't just think of meditation as sitting in a lotus position thinking of nothing (for a start, that's not what we do, or at least it's a very advanced practice). Consider walking meditation - or just walking while thinking, which is the foundation practice anyway. Try Thai Chi. Or yoga.

If you're Christian or Muslim, there are various forms of prayer meditation - it's not just for Hindus and Buddhists! Christians might be interested in an old book called "The Practice of the Presence of God' by Brother Lawrence - a Christian monk who would mediate while peeling potatoes or attending to the monastery garden.

And meditation is fine if you're not religious at all - there are plenty of secular techniques. One friend showed me an app on her phone which involved staring at a dot! 

5. Be careful of social media. The internet can be immensely helpful for people with autism, but it can also be a pond full of piranhas for the unwary. If you find yourself, like me, obsessing over things on the internet, getting into unintentional fights and worrying about what you've said, what they've said... consider taking a break. (This by the way is advice I am yet to take for myself, but I'm working on it). 

I am sure there are many other ideas - people tell me they love weighted blankets, for instance, but they tend to make me feel suffocated and therefore more anxious. Others love noise reduction headphones - I hate muffled sound though. But do prioritise your mental health, especially coping with anxiety. It is OK not to cope, it is OK to withdraw into your metaphorical cave sometimes and not socially interact if you don't have to. 

Lastly, you may have noticed I'm a trainee counsellor who didn't mention counselling as a way of tackling anxiety. This is because, in my experience, counselling can be great for helping you learn to live with anxiety, and I've had CBT too, which has given me some great coping strategies, but ultimately, therapy doesn't cure your anxiety, it only strengthens you to live with it. But yes, also get counselling!  

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.

_____

* 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.