Spectrum

This is probably one of my most freeing but difficult posts to write, because I haven’t spoken or told many people about this, and it might come as a surprise.

But if experience has taught me anything, it’s that sometimes we do the thing in the way that works best for us and it can be very difficult to have these conversations in other contexts. I can be an extremely private person, especially when I’m processing something. This blog is a safe space for me; it has been with me through many changes, ups and downs, and feels like a home on the internet.

CW: The following post includes some discussions of mental health difficulties, friendship struggles, and trauma relating to ableism.

I’m writing this post because I want to be as thorough as possible, to explain and to cover what I’ve learnt so far about myself and about autism, ADHD, and neurodivergence in general. It’s also that this will help me to be clearer about what I’m experiencing, and to document the experiences I’m having (and have had!). Late adult diagnosis is happening more because the community has become visible through social media and campaigning, and there is much more information available now compared to say, ten years ago.

Affirming my neurodivergence

I had a therapy session about four months ago, where my therapist (of one and a bit years), suggested that I might be on the autistic spectrum. I had classic signs of what used to be called Asperger’s (which is now absorbed into the general term of ASD, or the autistic spectrum, and has some problematic history surrounding it). This didn’t come as a big surprise to me, because about two years ago a friend was diagnosed with ADHD and I did some research into it.

Whilst I wasn’t sure about ADHD for myself at the time, I did some basic reading around autism and neurodivergence. So much of it aligned with my struggles, but some of those are congruent with being deaf too. So for about two years I kept wondering and occasionally reading and thinking about it. I started having therapy in September of 2020, after years of feeling burnt out and struggling with poor mental health.

My therapist brought it up because it seemed as if after all the work we had done to go through a lot of the layers of difficulty and trauma I’d been through, there was still something that shaped my thinking and way of being. My therapist is deaf so we also explored deaf identity and how I’d experienced life through that lens.

Even after that, it didn’t explain some other characteristics of my thinking and experiences, namely some as follows:

Specific difficulties with friendships, my devotion to lifelong learning and autodidactism (and teaching myself new crafts and skills), feeling ‘different’ and like I don’t quite fit in, a sensitivity to rejection and loneliness, sensory regulation (including some masked stims and sensory preferences), special interests, high sensitivity and empathy, social anxiety (and some generalised anxiety), occasional dissociation, PCOS and sensitive stomach issues (intolerances, IBS), masking (and struggling with showing people ‘the real me’), a desire for honesty and clarity, a strong interest in social and animal justice (justice sensitivity), a desire for stability and comfort (and struggles with sudden life changes), and many more markers besides.

I’d also like to say here that every autistic person is different. If you’ve met one autistic person, you’ve met one – we’re all individuals, and that’s why it’s called a spectrum (remember, spectrum doesn’t mean sliding scale either)!

What I’ve learnt though is that there’s an imbalance of diagnosis favouring boys and men rather than girls and women (and of course AFAB and AMAB, non-binary, Black, Indigenous, and Asian people, LGBTQA+ and trans women and men). There has been a tradition – what’s new? – of research with boys and men, and the diagnosis criteria is based on that research.

And often, autism looks very different in girls and women. Our socialisation has been different, and reactions to us are different. Our preoccupations are different and shaped by the cultures we live in. It’s also different when you have an additional thing, such as being deaf, and the kind of support, attention and adjustments you received, and the trauma from barriers surrounding that aspect of your experience.

It’s been revelatory to go back over my life with the lens of autism. I can see my struggles and joys in a different light, and give myself the compassion I sorely need, the understanding that so much of what happened to me, wasn’t my fault. That the way I was treated by people, the school environments I experienced, often felt so painful not because there was something wrong with me, but because I’m wired differently.

My desire to retreat when overwhelmed and overstimulated wasn’t because I was antisocial or shy, or because I didn’t want friends, but because my nervous system and brain had hit a limit. I loved to learn, loved to do art and create and share that with other people, but I was so incredibly overwhelmed and anxious at school (especially secondary, with hundreds of teenagers), that the only option I had was to mask and muddle through and find safe spaces where and when I could.

I was two very different people at school and outside school. It does definitely link to deafness and coping strategies, but even with deaf peers, I found that I often kept hiding my real self and let them take the lead. In some ways, that led to heartbreak when I was accused of clinginess and inevitably experienced a number of friendship breakups or distancing.

The reason I’ve found it so difficult to make and keep friends over the years is because of unspoken ‘rules’ that have seemed confusing or unnecessary to me, or because of a lack of transparency, game playing, and boundaries around empathy (I often feel too much or over-empathise which has stopped me from seeing red flags in friendships). I’ve often struggled with not knowing what other people expect of me.

ADHD and executive functioning

Lately, I’ve also seen that I may have aspects of ADHD too. Some autistic people also have it. Executive functioning is a big struggle for me, affects the way I approach and feel about everyday life, work, and tasks. I’m a classic list and plans person – I get lots of exciting ideas, priorities, and tasks I need or want to do – make plenty of plans, lists, and detailed goals, and find it incredibly difficult to follow through (execute), either because I become overwhelmed, over-commit, or because my priorities become skewed.

But I also rely on the simple lists that help me cope day to day – I use Notes on my phone to keep track of budgeting, books I have and haven’t read, house tasks that need doing, things I want to do, read, and watch, shopping lists. I’ve come to the conclusion that I may very well be a ‘lists’ person for the rest of my life, and if so, I could focus less on detailed plans and more on simple, easy lists, ones that make my life simpler rather than more complicated.

I have also experienced task paralysis, emotional and mental resistance to doing things. This is why, over the years, I’ve filled pages of my journals with ‘why can’t I do things like ‘normal’ adults do?’ and ‘what is stopping me from getting to where I need to be, and doing the things?’ – for me, reading those entries is painful, to see much of my time wasted beating myself up over something that could have been recognised years ago.

Some of my most painful moments have been a terrible sneaking suspicion that I might be lazy (clearly not true), or that there is something ‘wrong’ with me (also not true). I’ve had people insinuate or outright say that I’m lazy, or make me feel terrible for not being able to do things a certain way.

There is a lot of shame around executive functioning that I still need to unpack. It’s definitely similar to how some people with depression have a lack of energy to do some of the daily tasks that many people may not struggle with.

There’s a push and pull with being autistic and having ADHD. My need for safety and routine, stability and management of sensory and emotional overwhelm, push up against a need for stimulation and novelty, my brain’s tendency to jump around and get bored after a certain amount of time. Creating balance is crucial, and that only comes from fully understanding my needs and the ways that help me to manage the more difficult aspects.

Autistic joy

On the other hand, I also feel a sense of relief and some lightness. Yes, there are many things that I want to understand about the way I think and better ways for me to do things to support my life and work, but equally, I finally feel like there is nothing ‘wrong’ with me, even if it’s taking a while for my brain to fully understand that.

My frustration with myself was borne from living in a neurotypical society – a society that is structured and built in a way that actively suppresses difference. I’m now slowly trying to cast off the weight of neurotypical expectations of what an ‘adult’ should be.

I may have never quite felt like I ‘fit’ in anywhere – particularly in the different communities I’ve been involved in over the years – but I finally feel as if I understand why that is. And being deaf at least has given me a head start in understanding what it’s like to be seen as different.

I’ve always been drawn to outliers and outcasts, to people doing things differently, questioning social structures and rules, uncommon ways of thinking and being. I’ve spent my life learning about many different things, an insatiable need to learn and understand the world around me, to keep learning and to teach myself how to do things. I’ve had periods of great joy being intensely interested in something and learning all I can about it.

My love of reading has followed me everywhere, and I find so much pleasure in recommending books and sharing that love with other people. Far from wanting to retreat from life, I’ve often had an intense desire to experience things, to see things, feel them, even if I prefer to observe and understand first before I try it myself. I’ve always felt like my love of books is a love of life. If I didn’t want to understand and experience things myself, why would I bother learning about them?

There are so many things I’d like to write about when it comes to being autistic. Many things I’ve learnt over the last four months from – what else? – researching and listening to other autistic and ADHD adults on Twitter and Instagram. I still feel on the periphery of things, but equally no doubt I will eventually feel less vulnerable and like a newcomer to this part of my life.

And I’m hoping over the next few months to share more about being autistic, about the diagnosis process, and how I’m learning to manage the more difficult aspects of my executive functioning struggles.

Reading resources

In the meantime, I have read a number of helpful books, particularly focused on women. Some of them are not as diverse as I’d like (and exclude some genders), though I did find them largely helpful, and some I haven’t yet read. I also found the website ‘The Other Autism’ really useful and affirming – the articles on women and autism helped me to understand how it presents differently, especially early on.

1. Spectrum Women: Walking to the Beat of Autism by Barb Cook and Dr Michelle Garnett. A useful and comforting resource book. Although I was a bit nonplussed by how every section had a ‘recap’ by Dr Garnett (seemed a little condescending in places), and there was a lack of diversity, it was still helpful in places, and the first book I read.
2. Neurodivergent Mind: Thriving in a World That Wasn’t Designed for You by Jenara Nerenberg. An interesting look at a few different types of neurodivergence, not specifically just for autistic women, but nevertheless I found it interesting, even if, again, there was a lack of diverse voices, a little bit of ableism too, but on balance a book that I found useful in some ways.
3. Sensory: Life on the Spectrum by Schnumn. A collection of comics written and illustrated by autistic people. I truly loved this collection. It shows the diversity of the autistic spectrum and the experiences of autistic people and I found I could relate strongly to some of it too.
4. Drama Queen: One Autistic Woman and a Life of Unhelpful Labels by Sara Gibbs. A memoir by comic and autistic woman Sara Gibbs. Although Sara is quite different to me, for a start she’s much more extroverted, I could still relate to aspects of her experience and really enjoyed her voice and writing. She writes about her difficulties and joys growing up and her relationships with friends and family. She also loves cats so that was an extra bonus!
5. Help for Women With ADHD: My Simple Strategies for Conquering Chaos by Joan Wilder. A short book of helpful life strategies for those struggling with ADHD. I’d also recommend it for people of any gender – it seems universally helpful in some ways. Although I’m yet to fully implement the strategies yet, I found it very useful and will be trying some of her tips this year.

Books I have but haven’t read yet:

1. Stim: An Autistic Anthology by Lizzie Huxley-Jones. An anthology of writing, fiction and non-fiction, by autistic people.
2. Letters to My Weird Sisters: On Autism and Feminism by Joanne Limburg. A collection of letters Limburg has written to three women, exploring autism and feminism.
3. The Electricity of Every Living Thing: A Woman’s Walk in the Wild to Find Her Way Home by Katherine May. By the author of Wintering, this is Katherine’s earlier work of non-fiction, exploring the way her brain works and her autistic diagnosis.
4. But You Don’t Look Autistic At All by Bianca Toeps. Bianca talks about her own autistic journey, interviews other autistic people, and debunks myths about autism.
5. Understanding ADHD in Girls and Women by Joanne Steer (more UK specific).

I’m currently waiting for a pre-diagnosis assessment for autism (an assessment before the official assessment process), but have no idea how long this will take – some estimate anywhere between 1-4 years, potentially longer if I choose to wait for NHS adult diagnosis. With ADHD, it could be similar, but for the moment I’m waiting to see what happens with this stage. Another possibility is private diagnosis but that would be expensive and may not be affordable right now. I’m very sure of being autistic, and remember that self-diagnosis is valid, especially when health systems are so difficult to navigate for adult autistic people.

If you’ve got this far, thank you for reading, and coming along on this journey with me. A lot has happened in the past few months regardless of this, which is why I’ve been so quiet. But I will be around more and exploring this aspect of myself by writing about it too.