Autism: Alexithymia, Monotropism & Hyperlexia

It's 6am on a Saturday morning, and I am writing because my brain will not let me sleep. Every time I close my eyes I am bombarded with images of my life and the realisation of 'how it all makes sense' now, combined with the fact that I am not who I thought I was.

This week I started the assessment process for Autism, and learned how I have somehow been ignoring a huge part of myself for 31 years.

I've known that I'm Autistic for around 2 years, having learned a LOT about neurodiversity and coached many Autistic people whose brains work exactly the same as mine. From working with neurodivergent people every day, I can see very clearly the differences between those who are 'pure' ADHD, and the 50-70% who are also Autistic.

However, I didn't want to get an Autism assessment myself for a number of reasons, including:

• I already have ADHD diagnosed (3 times!) and have built an entire life on this knowledge, so 'officially' adding Autism into the mix would result in confusion and uncertainty
• The assessment is often around £3000, or 5 years+ on the NHS
• A therapist once told me I didn't have Autism because she 'worked with Autistic kids' and I was nothing like them
• I felt like I didn't 'need' an assessment to tell me I am Autistic, as I 100% know that I am (with a list of 75+ reasons that seems to keep growing)
• I didn't want to go through an assessment process based on outdated diagnostic criteria that applies to little boys
• I have been stuck at 75% of my free 'Understanding Autism' course for a year (it's very stale and I can't bring myself to open it to finish it)
• I had no idea what I would do with an 'official' diagnosis
• I didn't have a 'reason' to get an assessment, as I already knew this about myself and Autism isn't a condition that has a natural 'next step' such as medication.

However, as I have unmasked over the last 2 years, my Autism symptoms have become more debilitating on my life. From meltdowns in airports to panic attacks at construction outside my house, avoiding socialising at all costs to having a mental health crisis at a significant change to my routines, I have realised that a diagnosis is about more than ticking a box.

In starting the assessment process, I have realised HOW DEEP THIS BOX IS. As part of the assessment preparation process, I was sent some tests to complete, which has now ironically blown my mind at how much Autism has impacted my life in every way. I now basically cannot think or speak about anything else but Autism (and ADHD), and am hyper-aware of these aspects of myself.

The way I regulate and understand myself is through writing and turning it into something 'useful' for others, so below is what I've learned so far:

Alexithymia

Alexithymia is a term to describe problems with identifying, feeling, understanding, and describing emotions. It's like emotional blindness, meaning 'no words for emotion', affecting 1 in 10 people, and 1 in 5 Autistic people.

There's also a high correlation with ADHD-ers. This makes sense, as our executive functioning skill of self-awareness is impacted by both ADHD and Autism, making it hard ot understand our feelings, wants, needs and experiences.

So, I've been highly aware of Alexithymia for some time, given that I coach a lot of Au-DHDers and completely understand their difficulty in describing feelings other than 'fine'. I just didn't think I had it, because I'd say I am an extremely emotionally aware person.

However, I scored 131/200 on the Online Alexithymia Questionnaire (113 and above indicates Alexithymia). I did it again on a different website, because I didn't believe it, or thought that maybe I'd answered the questions wrong, and got 141.

Then I realised how much this explained. I do not feel feelings, unless they are overwhelming to the point of meltdowns. 99% of the time, I have zero idea what I'm feeling (other than an automatic 'fine'), unless I write it down.

It explains why I have spent so much time in meltdowns and panic attacks with no idea of how I'd gotten there. No idea of why I was having an anxiety attack, or what was wrong. Why I'd had so many arguments with people with no idea of why. How I'd ended up in so many terrible relationships with no awareness of whether I actually liked the person or not. Why I find it so hard to trust myself. Why I don't feel fear and why I can talk about the intense trauma that I've experienced like it's the latest news story.

Why I'm relatively fine with writing this all out on LinkedIn and sending it off to 42,000 people (hope you're enjoying it!).

Sorry for the slightly distressing image above, but I remember watching it in the Pirates of the Caribbean as a teenager, and realising that was how I felt. This is how I would describe Alexithymia.

I don't consciously feel excited about things in the future unless they are literally happening in that second, I don't feel sad about arguments, happy when the sun comes out, the sense of wanting to see people, or angry at people mistreating me. If you can't feel your emotions, this has a hugely debilitating impact on your life, because you still have them.

This means it's very difficult to regulate them, and can make you explode with emotions. Which is ironically, why I've always been called a 'drama queen' and 'too emotional' right from childhood.

However, I do feel feelings through other people. Alexithymia explains why I do everything I do - why I am so obsessed with coaching and helping others. They help me to understand myself. Sometimes it feels like I can read minds, because I am so highly perceptive of body language and processing all possible outcomes of how a person may feel when talking to them. I can put myself in their shoes and understand how lots of different kinds of people might feel.

I wouldn't be able to do any of the things I do without Alexithymia, so maybe in this way it's a blessing - I'm still figuring out how I 'feel' about it.

You can do the free online test here.

Hyperlexia

Learning about Hyperlexia was one of my Autism 'light bulb moments'. It's a trait meaning you process information differently from others, with advanced reading skills and abilities.

There's a lot of information about Hyperlexia in children (often from shocked parents about their child's ability to self-teach reading), but hardly anything in adults.

The little I found made perfect sense to me: an obsession with writing and words, super-fast reading speed, but not always remembering or processing what's been read, and auditory processing issues.

The first question of my pre-Autism assessment chat was how I would ideally like to speak with others. I replied that ideally, it would not be at all - it'd be by writing. I feel like I understand myself far better through writing than speaking, and have much more control over what I'm expressing.

It comes from a completely different part of my brain than I can access consciously (see above: Alexithymia), and is something I have to do to when feeling overwhelmed (see: this entire post). I can only learn things by writing them all out to understand them, and then re-writing them in my own way.

It explains how I've been able to write 4 books (but largely not remember what's in them at all), learn entire subjects in months and pass law exams at university, graduating with zero idea of how to actually use the information I could no longer access or consciously remember. Writing and reading is easy, but only on my terms: I really struggle with writing on demand (unhelpfully!).

It's easy to look at Hyperlexia as 'giftedness' (such as with a child), but this can actually be very challenging within a 'one size fits all' system. I used to finish reading entire textbooks in class as students would be reading out one page per person, hiding books within my book out of boredom. I was constantly reading, feeling much more connection to books than people, like Matilda - and am now pretty much a walking library.

However, being able to intake or express a lot of information doesn't necessarily mean that we can process, recall or understand it, which likely doesn't make a lot of sense to those who aren't Hyperlexic. On the contrary, if we understand these things about ourselves, then we can create ways of harnessing them, such as by writing ourselves letters and journalling.

Like the other 'conditions' in this post, Hyperlexia is frequently associated with Autism, and isn't a condition that would typically be diagnosed by itself, but rather could be recognised.

'Almost 84 percent of children with hyperlexia are Autistic. On the other hand, only about 6 to 14 percent of Autistic children are estimated to have hyperlexia.'

Monotropism

Monotropism is one of the most fascinating things I've learned about when it comes to neurodiversity, because again, it explains so much.

It's a processing style that involves focusing on a small number of things at once, whilst neglecting or not perceiving less interests. For those of us with ADHD, this may sound like hyper-focus.

My understanding is that there's a lot of crossover, but there may be less diversity of interests more generally speaking. For example, someone I know with ADHD gets extremely hyper-focused, but they have lots of different interests: sewing, piano, guitar, cooking, tennis, and so on.

In contrast, my interests extend to neurodiversity, mental health, and ADHD. They like a lot of different music, whilst I have almost always just had one or two artists I listen to on repeat (as confirmed by Spotfiy below). They have lots of friends, and I have very few.

We both find it hard to shift our attention from one thing to another when we're in hyper-focus, but to my knowledge, they have not spent entire months working on books until they are done. When I am engrossed in a project like a book, I will write it from 6am to 12am, then go to sleep, dream about it, wake up, and write it again. Eating and sleeping becomes very difficult until it's done.

The above image from my 'Spotify Wrapped' sums up exactly how I experience the world: like a horse with blinkers on. I often feel quite boring because of this, and like I have no hobbies or interests, but it is extremely hard for me to regulate.

In this way, Monotropism underlies ADHD, as rather than a 'deficit' of attention, we have trouble controlling it. We have an interest based nervous system, in contrast to the 'importance based nervous system' that neurotypical people are said to have (i.e they can energise and motivate themselves for what's important, not just interesting).

It's also said to be a central underlying feature of Autism, such as in relation to our 'special interests' and 'info-dumping'. The hyper-focus is said to be motivated internally, which is why we may not care about external judgement for our interests.

For example, my motivation in writing this right now is internal: to process, understand, and share my learnings with others. I don't particularly mind if anyone reads it or thinks it's good or bad - I just needed to write it to get it out of my head.

As above, I am apparently more Monotropic than 91% of Autistic people and 100% of Allistic people. This has put a lot of my life into perspective: how I've been able to create things like books and courses by unhealthily obsessing over them for weeks without leaving the house.

You can do the free online test for Monotropism here.

It brings a sense of overwhelming and lonely validation to see the way your brain works summed up in terms that there's no information about or support for, but is inherently understandable as 'you'. I know a few people who have these traits, but there's very few books on any of these topics individually that seem accessible or based on lived experience.

So, I guess this is why I decided to share this on here. I've been debating whether to write a book, a substack, a newsletter, or whether this is all information that's best kept inside my head.

Being neurodivergent can be extremely lonely, even once you know about it. Each of us is still uniquely individual, and pulling apart outdated, deficit-based diagnoses, and trying to figure out what explains our unique make-up, and why we still feel so different, is never-ending.

I loved the below lines I have taken / edited from Pierre Novellie 's excellent book, 'Why Can't I Just Enjoy Things?':

'If you get diagnosed, you will gain certainty and lose hope. You are becoming personally correct but wrong in the majority. I was always aware of the various things 'wrong' with me, but I always carefully nursed the idea that my failings were solvable and I could fix myself.

With a diagnosis, I have what you might call an official reason to be kinder to myself. A sick note for the PE lesson of my unreasonable expectations...

[but] I have lose the hope that there really was a solution all along. I no longer have the belief that someday I will 'fix' myself fully, that I will become this mystical Proper Person and manage to enjoy all the things that I should have been enjoying all along.

If you were in prison, would you rather have the false dream of someday being released, or the knowledge that you never would be, and therefore make the most of your life within those walls?

In finding out that you are in a specialised 1 to 5% of the population, statistically speaking, most people are not like you. Now obviously, this is true for many people, but they have the luxury of never having to confront that truth. They can sit around imagining that the glorious silent majority agrees with them.

Certainty is like a castle wall: it can be reassuring and protective, or imprisoning and isolating, depending on your perspective.'

This sums up my experience better than I could right now, but there is one thing I have learned through this journey: you are not alone. There is always someone else out there who thinks like you do, and you simply have to find your people. We may be different from 'most', but there are billions of people in the world, which means there are definitely people out there who have the same idea of 'fun' and 'life' and 'socialising' as you.

These aspects of neurodivergence aren't based on a 'disorder': they are based on differences. Being different is not a bad thing: it just makes you who you are.

Become an ADHD Coach in September here (with as you can imagine, a very heavily Autism-influenced slant - watch this space. 🙃)

Get ADHD (or Au-DHD) coaching here.

If you're thinking of getting an Autism or ADHD assessment, I genuinely cannot recommend Dr Becky Quicke & Harriet Richardson of Autistic Girls enough for an extremely neuro-affirmative, detailed, and most importantly, kind, experience.