We need to talk about autism
It was Neurodiversity Celebration Week two weeks ago and it’s the last day of Autism Acceptance Week today. I also found out today that I need to wait 12 months for my autism assessment.
Shocked? Please don’t tell me I ‘don't look autistic’. As they say, ‘when you’ve met one autistic person, you’ve met one autistic person’.
Here’s my story:
I thought only boys were autistic. Everything I’d heard had always been about a little boy who loves lining up his toy trains and doesn’t make eye contact. I didn’t realise this was extremely limited.
A few years ago I saw a video of an autistic woman who had just been diagnosed as a young adult. She was sharing her story to raise awareness because there’s so little talk or research around autism in women and girls. I thought it was super interesting, and then thought that some of the things she was talking about sounded similar to things I experience/have experienced. I didn’t think I was autistic though - surely I’d know by now if I was, right?
A bit of time passed and I saw another one of these videos by someone else. (Can’t remember who either of them were sorry, or I’d credit them.) But again, she was saying things that really resonated with me: about finding it hard to make and keep friends, friends stopping talking to her suddenly for no reason, being bullied, having sensory issues, burnout, having routines.
I then started researching a bit, reading books, and took the AQ-10. Huh, looks like I might be autistic. But how can that be? I’m nothing like those little boys I’ve heard about all my life.
Turns out autism has mostly been studied in boys. Like a lot of things are only studied/based on men - the book Invisible Women is full of examples, like how ‘women are 17% more likely to die than a man in a car crash and 47% more likely to be seriously injured. In 2019, another study came out which put the increased risk of serious injury and death for women at 73%. This significant disparity in risk is in no small part thanks to the use of a dummy that’s based around the body of the average American male, as a stand-in for the average human in car crash testing.’ But this is a WHOLE other post).
Autism presents very differently in women and girls.
So it’s often missed in us because of that, and because we mask.
It turns out not everyone watches everyone else like a hawk in order to learn how to be human. Not everyone does this so much that they end up doing it more than intended. I was so used to copying all of the ways people behave and chat that I’d end up copying things I didn’t mean to, like accents or mannerisms (which is super fucking embarrassing btw, especially when it’s something that’s really particular to one person and you start doing it as well 🙃).
It took a good couple of years for me to be thinking seriously that this could explain a lot of things in my life. I remember telling my partner that this really, profoundly, feels right - that it’s not like when you diagnose yourself with cancer after a 3 minute search on the internet.
Fobbed off by the GP - Am I wrong?
The first time I mentioned it to my GP was when we were still living down south, and we moved to Manchester in 2021, so it was a good while ago. I got fobbed off. And tbh I wasn’t sure if it was right - I didn’t want to be co-opting something that isn’t for me. Maybe I was being a hypochondriac or misguided? Maybe I just have some similar experiences but I’m not actually autistic? So I left it.
But man, it really explains so much. How I’m so sensitive to light, noise, temperature. How I sniff all new food before taking a bite, and texture matters more than anything else. How I didn’t eat anything other than eggs and toast or eggs and [something else beige like chips/waffles/english muffins] throughout my whole time at uni and eat the same lunch for years at a time until it suddenly becomes disgusting. How my attention to detail is second to absolutely nothing, and I do things the exact same way every time because why on earth would I do it any differently? Why I have an auditory processing disorder and hate phone calls. Preferring writing over speaking. I could go on.
So this time I started compiling a Google Doc with everything in it. And a couple of weeks ago I got the guts again to send it to my GP. It’s four A4 pages long of comorbidities, traits, stims, test scores, and issues.
I was left a week without any reply so I followed up by phone (and man, do I hate phone calls) and was told I’m being referred for assessment - yay! But to be aware that it’s a ‘significant waiting time for adult assessment’ - oh no! After a while I got my letter through from TES which also failed to provide a timeframe (something not good for me because I need to know what to expect - are we talking days, weeks, months, years??) so I hunted around for an email and got a reply a couple of weeks later.
“We are currently looking at 12 months.”
Great. So now I’m twisting in the wind for another year, at the very least almost two years after the first time I worked up the courage to mention it to a doctor and an unknown amount of years from the first time I seriously thought this could be me.
Autistic people are more at risk of depression and suicide
One thing I noticed about the letter was the confirmation of assessment was very brief, but then there was an A4 page full of where to get help: GMMH Helpline; Mind; Samaritans; Bluesci at Night; Papyrus. Because up to 50% of autistics will suffer from depression (it’s a common comorbidity along with anxiety, and women and girls are often misdiagnosed or only diagnosed with these, like me in 2019). We’re at more risk than neurotypical people and they know the long waiting time is bad.
The National Autistic Society explains:
“Daily life can be more challenging for autistic people. Differences in understanding social situations and relationships, and being misunderstood or not accepted by non-autistic people can all increase anxiety and stress. This can lead to low self-esteem, social isolation and loneliness. These can all contribute to depression.”
“Autistic people are at a higher risk of suicide than non-autistic people. Figures show that as many as 11-66% of autistic adults had thought about suicide during their lifetime, and up to 35% had planned or attempted suicide (Hedley, D., & Uljarević, M. 2018). Autistic people are also more at risk of dying by suicide than non-autistic people, with the highest risk seen in autistic people without co-occurring intellectual disability, and autistic women (Hirvikoski, T. et al 2020; Kirby, A.V. et al. 2020).”
But even knowing the above, I’m going to be waiting another 12 months. For some people it’s an 18 month wait. Even though NICE (National Institute for Health and Care Excellence) guidance states that no one should wait longer than three months between being referred and first being seen.
We’re going backwards
While I’m here feeling angry, sad, lost, and worried about waiting 12 months for an assessment, a friend told me today that York Health and Care Partnership are stopping adults from getting assessed:
‘From Monday 27th March 2023, a 3 month pilot will begin which will mean that adults who approach their GP seeking an autism and/or ADHD diagnosis will be refused access to assessment unless they meet one or more of the following criteria:
Immediate self-harm or harm to others. A mental health assessment must have been undertaken and a crisis management plan in place.
Risk of being unable to have planned life-saving hospital treatment, operations, or care placement
Imminent risk of family court decisions determined on diagnosis e. g family breakdown, custody hearing’
I’m sorry what!? This is ridiculous, damaging, and goes against all the guidelines there are.
Autistic people are being failed and it’s not fucking okay. Repercussions can range from suicide to just living miserably (not everyone’s experience, but has been mine), and I don’t think either of those are acceptable.
Because with the right accommodations, or just with neurotypical people not treating us differently or poorly, autistics can live a good life. We’re not disabled by being autistic, we’re disabled by living in a society that is not made for us and does not try to accept or accommodate us.
I had to move primary school because I was being bullied so badly. I was bullied in high school for being a ‘know it all’ and for thinking I was ‘better than everyone else’ (very common for autistic girls!), because I dealt in facts and have very strong morals. I’ve struggled with depression and anxiety since I was a kid, I worry I’m a terrible human being all the time, I struggle to make and keep friends which is very lonely. If I’d been diagnosed earlier I would know that I’m just different to other people, and that the way I think and am doesn’t make me a terrible person, and there are actually a whole host of people who are similar to me! I can’t tell you how that would have made me treat myself with more grace and kindness and stop thinking that I’m a huge, terrible problem.
Self-diagnosis
And I’m glad self-diagnosis is accepted in the autistic world because there are so many barriers to getting diagnosed (not being believed, waiting times, cost to go professional, how the process and assessment itself are) or you can be mis-diagnosed with other psychiatric disorders because doctors aren’t willing to even assess for autism. I’m afraid of all the above yet am seeking diagnosis because I need to know for sure. I’m jumping the gun and talking about it now, though, because this is me and I want to talk about it and I can’t wait 12 months to do that. But, I’m terrified at the potential response: What are family and friends going to think? Am I going to lose clients? Am I never going to get a client again? How many people are going to simply think I’m wrong because of the historic stereotype? Again, I could go on.
There may not be medication for autistic people, but getting a diagnosis means we can understand ourselves better and ask for accommodations. These things make a huge difference. We shouldn’t be going backwards in stopping people from being assessed! It’s just so illogical and downright cruel.
So there you have it. I am, at the moment, self-diagnosed. We’ll see what happens in a blinking year at the assessment.
(I really hope I haven’t used the wrong language anywhere, please tell me if I have. I’m new to talking about this.)
Sources:
Invisible Women: Exposing Data Bias in a World Designed for Men - Caroline Criado-Perez
https://newsletter.carolinecriadoperez.com/p/invisible-women-extremely-tiny-men
https://autisticgirlsnetwork.org/autism-in-girls/
https://www.autism.org.uk/advice-and-guidance/topics/mental-health/depression
https://www.autism.org.uk/advice-and-guidance/professional-practice/suicide-research
https://www.autism.org.uk/what-we-do/news/autism-assessment-waiting-times-2023
https://ydrf.org.uk/2023/03/26/autism-and-adhd-assessments-to-be-refused/