I’m 44 years old and on Monday 17 April (autism awareness month, fittingly) 2023 it was confirmed I’m autistic. I’m 44 years old and I spent decades being tortured in a world not made for me.
I tried writing this earlier today and it ended up a (admittedly cathartic) piece about all the difficulties I’ve had over the years and how I’m lucky to be alive. While that’s important and needs to be shared (and I have no time for toxic positivity), I didn’t want this particular piece to be about that. I want this to be celebratory. Because it is. I’m happy to be autistic and I’m relieved to have it confirmed.
In May 2020 my friend Julie, who was investigating a diagnosis herself, messaged me to ask if I’d considered whether I was autistic. I was taken aback at first as I’m not a numbers person, I’m not a scientist, I’m not a details person (turns out it depends on the details), and I’m creative. Though, I should have known better, as it was clear these things don’t hold true for every autistic person, especially given that most of the autistic people I know are artists in one way or another (and of course scientists are creative too).
I went on a three-year research journey: reading articles, watching videos and films, following various autistic people on twitter alongside the #ActuallyAutistic hashtag, and speaking to autistic friends and acquaintances who very kindly shared their experience and gave me advice. I found out the assessment process needs overhauled, that girls and women are often missed because of various factors including: the bias of psychologists; masking (suppressing autistic behaviour, trying to fit allistic norms); girls and women can be passed over if they’re the quiet ones who don’t display any outward difficulties (all the time they are roiling inside), and they often have breakdowns throughout their life and can be misdiagnosed with mental illness such as depression and borderline personality disorder.
As I was doing this research, I was reassessing everything about my life and what I was reading made a lot of sense; it matched my experience and I no longer thought of myself as weak or ‘wrong’. It gives me an explanation for all I’ve struggled with over the years. I’ve tried to force myself to fit into an allistic world and it’s been painful. Knowing I’m autistic means I can stop being so hard on myself. I can put things in place, ask for access adjustments, explain to people my preferred communication style (direct, no bullshit, no subtext*), and utilise access aids to make my experience of the world easier. I’ve suffered for decades and I’m not putting myself through that anymore.
[* DON’T MAKE ME GUESS WHAT YOU REALLY MEAN, honest to god. Just don’t. It’s exhausting.]
Assessment and Diagnosis
In terms of the assessment process, I was definitely one of the lucky ones.
I asked my GP for an autism diagnosis referral and they got me to fill out a screening questionnaire. They then asked me why I thought I was autistic, so I sent them a list of reasons. This made me feel very vulnerable, to be honest, and was the main part of the process I struggled with. It was the first time I’d shared any of those things with anyone; most of the things on the list were things I hid or minimised. My GP immediately referred me.
There was only a year’s wait between my asking my GP for a referral and being seen. I was given the option of being assessed by the NHS (and continuing to wait on a very long waiting list) or be assessed by Number 6, a (sadly rare) service for autistic adults. Julie had already been through the process with Number 6 so I knew they were decent and could be trusted.
The process involved filling out a questionnaire about my childhood and teens, two 1-hour sessions discussing my life, experience at school and in employment, my special interests and stims, mental health issues, sensory issues and so on. My husband (who has known me since I was 15) then took part in a telephone interview where an assessor asked similar questions to what I was asked during the discussion sessions. I then underwent a 1-hour task-based session, which also involved a few more questions. I was anxious about the assessment process but Number 6 made it easy to navigate and I’m so glad such a valuable service exists.
There’s also follow-up: a 1-hour feedback session and then access to their services, which is fantastic. Number 6 run various small groups for autistic adults, which I’ll definitely consider joining, including a Late Diagnosed Group that sounds very structured (yay for structure!) and helps you process your diagnosis, which is wonderful!
As much as I’ve already put in three years of research, written out a list of reasons I thought I was autistic for my GP, and gone through the assessment process discussing my life, my sensory issues, my obsessions and stims*, it’s a lot to just be told “you’re autistic” when you’re in your forties and have to suddenly re-evaluate your whole life and figure out a way forward. So massive thanks to the staff at Number 6 and those who set up this hugely important service. And huge thanks to Julie; if she hadn’t mentioned it to me I’d likely still be struggling and confused.
[*Both a ‘special interest’ and a stim (listening to one song on repeat for an hour or more, or even looping one part of a song), my intense 5-year Pearl Jam obsession that shows no sign of burning out makes a lot of sense.]
Stigma and (mis)Information
While things are changing, autism is still unfortunately stigmatised and there’s a lot of misinformation. To address the very basics:
- This shouldn’t need to be said, but just because I’m autistic doesn’t mean I’m exactly the same as your dad’s cousin’s friend’s niece who’s autistic; just as allistic people aren’t all the same, autistic people aren’t all the same.
- In a similar vein, don’t assume you know anything about me (or any other autistic person) because you attended a seminar on autism once in 1993.
- Autism isn’t something I have, it’s something I am.
- Autism is a disability; ‘disability’ is not a dirty word (I lean more towards the social model, but aspects of the medical model still apply).
- I don’t ‘suffer from’ autism (I suffer from an allistic world not built for me).
- Yes, I have empathy; it’s a nonsense myth that autistic people don’t.
- Autism does not need cured; that’s eugenics (I’m happy to exist, thanks).
- I don’t need behavioural therapy to make me fit allistic norms; technically I’ve imposed that on myself for decades and it’s been painful.
- Hiding our autistic way of being is called ‘masking’; it’s extremely exhausting and can lead to meltdowns and burnout.
Other autistic people may have different opinions on all of the above; it’s important to listen to individuals and not impose anything on them.
My neurotype means I see and experience the world differently from allistics, and as a creative that obviously impacts my work. Is it any surprise I wrote HellSans, a novel where a minority are literally allergic to society and are severely punished? Or Goblin, about an outcast kid whose family and comrades are non-human animals? And pretty much every one of my short stories are about alienation in one form or another. As I was going through the assessment process, I was writing an accidental novella which ended up with an accidental autistic protagonist; I didn’t set out for them to be autistic, but they revealed themselves and I embraced it, able to explore many of my own experiences through them, which was very freeing (it’s disturbing how much I’ve hidden over the years, the effort that’s taken, and for employment and friendships to break down regardless).
I’ve not (knowingly) read many autistic authors, but it’s been a joy to see Elle McNicoll achieve success in the industry and I wish her a long fruitful career and hope there will be many more like her. The publishing industry needs to embrace, support, celebrate, and market autistic authors; we are not niche, and our perspective is important. If you have any favourite autistic authors I should check out, please leave a comment so I can start a list.
So, here I am, celebrating being autistic and finding a new way of being. May the next few decades (lizards willing) be more joyful and weird (turns out I was holding back on the weird). I’ll sign off with a raised glass to my fellow autistics, alongside a smile and a middle finger to every person who’s treated me like shit over the years.
The cathartic piece. And a blog on autistic joy, obsessions, and stims.
Further Info on Autism
If you want to find out more about autism here’s some great sources:
Seeing the Unseen – why are autistic women so often overlooked? Film review by Julie Farrell.
Seeing the Unseen: Trailer and clips for the documentary that looks into the lives of 17 Icelandic autistic women.
Autistic Masking: A brief piece from The Autistic Advocate on masking. The rest of the site is worth checking out too.
Yo Samdy Sam YouTube channel: Sam, a late diagnosed autistic adult exploring autism.
4 thoughts on “4 Ever Autistic”
Thanks for sharing your experiences hope the diagnosis, albeit much later than ideal, helps explain and affirm things. Your, as always, astutely argued and passionate fight for the rights, fairness and justice of those with disabilities is empowering and energising. I’ve a female relation who was also belatedly diagnosed with autism having suffered erroneous and damaging misdiagnosis of depression and borderline personality disorder and concomitant inappropriate treatments. Shine on!
Just knowing has already made such a difference. I’m sorry your relative went through that – I experienced similar. Many of us have a very similar story, unfortunately. Thanks as always for your lovely comments and support, Ash! It means a lot.
Ever, this is great! I’m happy for you pal (and obviously growling at all the shite you’ve had to put up with over the years). You are an excellent person. Siân xxxx
Thanks so much, lovely Sian! I really appreciate that xx