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!