I spent nearly 17 years of my life with no idea that I had a completely different neurotype to the majority of people around me. I thought my brain was ‘typical’. After all, I seemed to blend in with my peers. But ‘blending in’ with your peers does not mean your brain is ‘typical’.
Growing up undiagnosed meant that I had to hide the fact I found a lot of things difficult, because I thought it was my fault that I found stuff hard. I thought I was the failure, not that the system around me was the one failing me.
The system stuck labels on me which were hurtful. Like being told I was ‘dramatic’, ‘sensitive’, ‘hysterical’, and had a personality disorder when I didn’t. It meant my difficulties were viewed through inappropriate lenses and I was given inappropriate support.
It meant that there was never any chance for me to have my needs met, not that having a diagnosis would have necessarily enabled this anyway. But it took that chance away and left me to blame myself for everything I couldn’t seem to do quite like everyone else.
When I opened up about certain things, people replied with “that’s normal”, “we’re all like that” and “you’re just being overdramatic”, leading me to come to the conclusion that everyone must experience things the way that I did, just I was useless in coping with those things.
I grew up believing that there was something fundamentally wrong about me. I knew that I didn’t seem to fit into the world, and because I couldn’t pinpoint why, I believed it was ME. I came to the conclusion that leaving this world was the best option.
It meant I was more vulnerable to mental health problems because of the exhaustion from masking and not understanding what was wrong with me. And so I attempted suicide numerous times, spent months in hospital and was sucked up into a system which didn’t recognise my needs.
Not being diagnosed meant I never had the chance to access support which could help. I wasn’t introduced to my SENCO at school until my final year of sixth form, when I was diagnosed. So within one year she helped me with things I should have had help with from the age of 11.
Of course, those diagnosed young face their own different barriers and difficulties due to being diagnosed. Early diagnosis is not always a privilege for everyone. Support and acceptance often is non-existent.
But in my case, I really do wonder whether 16-year-old me would have been sat in that hospital, terrified and away from everyone and everything she knew, if the reason for her feeling so out of place had been explained to her years before. If those years of developing my own maladaptive coping strategies and harming myself to try to cope with the world I felt so overwhelmed by hadn’t left me so utterly defeated. If instead those years had been spent by me learning the things I can now learn, setting boundaries for myself and realising that I don’t have to function the same way as people with a completely different neurotype do.
My learning began just after my diagnosis. Learning that I can’t hold myself to impossible standards for the rest of my life because I will burn out repeatedly and learning that I have autism-specific needs that I cannot ignore or rock bottom won’t be far away again.
I wish I could have grown up knowing who I was, or at least knowing years before I did. I know it may not have taken the pain away and I’m sure I’d have had a completely different journey with self-acceptance, but still, that bitterness that comes with late diagnosis remains.
To newly diagnosed autistic young people…I want you to know that you were never the failure, you were the one who was let down.
I want you to know that holding yourself to neurotypical standards when you are not neurotypical is impossible.
I want you to know that it’s okay to be angry, sad and upset with the world and at adults for not picking up on it. It is also okay to be upset with your diagnosis, or incredibly relieved. There is no wrong or right way to cope with finding out you are autistic.
You know now. It’s taken a long time, but now you know, and you have all the time in the world to learn what ‘autism’ means for you. You can ignore it for a while, if you like. You can jump straight in and read as much as you want to. You can claim your autistic identity and shout about it. Or you can keep it quiet. How you choose to cope is up to you. You will see lots of people telling you what is best, or what has worked for them, but only you know what is best for you. It might take you a while to get your head around the news that you are autistic, and seeing your whole life suddenly through a different lens can hit hard.
Look after yourself. You can begin to start deconstructing those incorrect labels and the hate you’ve built up towards yourself. You can begin to learn who YOU are, and YOU are an incredible human being.
Emily is a Trustee of Autistic Girls Network and, as a young autistic woman is a passionate mental health activist and autism advocate. You can find her blog here or join her 29k strong Twitter following.