Quirky. Dramatic. Different. The odd one out. Over sensitive. Emotional. A bit too much.
All of the above are adjectives that have been used about me, with varying regularity, throughout my life.
The thing about hearing these sorts of things said about yourself over the course of a lifetime is that you start to internalise them as core beliefs about who you are…and they begin, quite quickly, to determine how much you value yourself as a person.
So to find out later on in life that actually, there was something else happening all along…is quite a strange revelation to get to grips with.
All of a sudden, all of those words start to swirl around in your brain once again…accompanied by the many memories and experiences attached to them. But now you’re viewing them through a brand new lens. Suddenly…that image you’ve built up about yourself begins to change. Slowly, slowly…but very surely, as that new understanding of who you are starts to build, the shame that you internalised over all of those years begins to ebb slowly away…leaving in its place, space for something else. Something kinder.
A few months ago, at the age of 42, I was diagnosed with Autism Spectrum Condition.
It might seem a bit odd to have reached my 40s before even considering the possibility that I may be autistic, but the truth is that our society doesn’t really have the best understanding of what autism really is or how it looks. Especially in girls.
I know I certainly didn’t….but I thought that I did. Because autism was always a part of our family.
I grew up with a family member who was diagnosed with autism as a young child, and later another family member was also diagnosed young…and without sharing too much personal information about those people, I will just say that these diagnoses were not something that anyone would have doubted. Both cases were the kind of classic presentation of autism you have likely seen in movies or on TV.
So I thought I knew what autism looked like – because I had always been around it. But what I didn’t realise was just how differently autism can present in different people. In fact when I was growing up in the 80s, it’s fair to say that nobody really knew that. Teachers wouldn’t have known of the more subtle signs to look out for, neither would parents or even GPs…particularly in the case of autistic girls, who most commonly go undiagnosed until later in life.
Autistic girls do not often present in the same way as autistic boys – their stims are often completely internalised, they learn to mask their social struggles early on, and their tendency to have a very organised and methodical nature alongside often being extremely emotional (rather than the usual stereotype of autistic people being cold and unfeeling) can be mistaken as typical feminine traits.
So it’s no wonder that so many women raised in the 80s and 90s are only discovering their late diagnosed adult autism now. Often this realisation comes after having children, which makes a lot of sense – given the extreme demand and sensory overwhelm that we experience in motherhood.
My own realisation only began when I started to recognise autistic traits in two of my own children. My partner was diagnosed with ADHD in 2020 at the age of 48 – and this led both of us to start to learn more about neurodivergence, and what it really looks like.
Once our understanding had grown, we began to realise that two of our children showed signs of both Autism and ADHD. We shouldn’t have been surprised, as actually ADHD is the second most inheritable trait that a parent can pass on to their children after height – research shows that there is around an 80% chance that a person with ADHD will pass it on to their children.
As we started to learn more about parenting neurodivergent children, I started to recognise certain traits in myself. So I bought a book – Unmasking Autism by Dr Devon Price, which focuses on late diagnosed adult autism in women and girls specifically (in a trans inclusive way). This book was the biggest eye opener of all.
There was so much within its pages that I could relate to and recognise in myself.
So I decided to take an Autism Quotient test online, just to see how I scored for Autistic traits. A score of 13 or above means that autism is probable. My score was 46.
So I approached my GP to discuss the possibility of late diagnosed adult autism, and the process of testing began – until eventually, after many many forms and hours of conversation, I was sitting in front of a psychiatrist, hearing the words “I am diagnosing you with autism spectrum condition”.
She asked me how I felt. I said “I don’t really know….relieved, I think?”
That is the feeling that has stayed with me since. There was a bit of sadness too – for my younger self, wondering about what might have been different if I’d known. Perhaps I would have been a bit less hard on myself. But the reality is that, with such little understanding of autism around in the 80s, life probably would have been harder if I’d known. The stigma was very real, and who knows what limitations may have been put on me.
There was also some anger, especially when thinking back to the some of the things I struggled with most – which at the time were seen as negative personality traits.
My lack of ability to make friends or settle at school. My constant crying throughout every school day, to the point where teachers rolled their eyes at me and told other teachers to just ignore me. My extreme anxiety at being away from my safe places and people. My extreme justice sensitivity – the way I would fixate on certain news stories and become obsessive over them, wanting a fair outcome and feeling utter devastation at the lack of justice in the world around me. Excessive rejection sensitivity. Never feeling truly comfortable around anyone – always having to be conscious of the eye contact I was making. Rehearsing every conversation and social interaction in my head. Making repetitive, embarrassing movements that I now realise were stims. Having particular sensory issues around things like cutlery and plates, food smells and textures – that were seen as irritating quirks. The frequent, dramatic tantrums I would have – all the way through to adulthood, when things would just feel too overwhelming so I’d end up screaming and shouting and throwing things.
Now I realise that all of these things – and many more – are traits of autism. If I’m honest, sometimes I think I’d love to be able to go back in time and have a word with some of the people who shamed me for those things – to point out that actually I wasn’t being difficult, I was an autistic person struggling to cope.
But most of the time, if I could go back in time at all, it would be to visit my younger self – to let her know that it’s ok. That she isn’t the problem – she isn’t going mad, she isn’t unlovable. That yes, she struggles to make friends but that’s not because she’s a horrible person. That yes, she feels different because she IS different but that’s ok. That she doesn’t need to navigate her teens and 20s by getting as drunk as possible to cope with social events, because it’s ok to just be a bit awkward.
I know I can’t actually go back and tell her those things. But just understanding the reality of it all now is healing in itself. Because somewhere inside me….she knows. My inner child knows what was happening all along. She knows that she can stop wondering why things feel so hard. She knows that she can stop blaming herself. I think that’s where the sense of relief is coming from.
And that’s why I want people to understand that people with late diagnosed adult autism are not jumping on bandwagons or seeking labels. They just want to be able to understand themselves better. To stop gaslighting themselves about the differences that they always knew they had.
For the people who worry that attaching labels to people is a negative thing – please understand that, just as I began this post with the barrage of labels that have been attached to me throughout my life, labels will always be placed upon people. Whether they have a diagnosis or not. But some labels are helpful.
Having this label has helped me to detach myself from the stigmatising ones that were placed on me unfairly. I see nothing negative about that at all. This label helps me to access support when I need it, it makes the world a little bit easier to navigate because I understand the way my brain works a bit better now.
Autism is not a thing of shame. It’s just a difference in how the brain processes things. Autistic people should not be made feel shame for finding comfort in finally understanding their neurotype.
I saw a quote recently that said “There’s comfort in knowing that you’re actually a zebra, and not just a strange horse.”…and I think that sums it up nicely.”
Zebra’s are wonderful exactly as they are. And so are we.