I imagine if I come back to this in another year or two, I’ll be adding to this list and looking back on myself where I’m at now and shaking my head. Because things change, and we learn as we go. I’m sure there will be at least a few more surprises and lessons along the way.
But for now, I wanted to look back on the last eighteen months of my life post-diagnosis. I’d prefer to say post-identification as I hate the fact that we need to ‘diagnose’ autism, given it categorically isn’t a disease or illness. But I do mean diagnosis here, because that was the formal process I personally needed to go through to get the understanding of myself that I was searching for. Self-identification is totally valid in my view, but for me, I needed someone else to confirm it for me, because I know I’d have doubted myself otherwise. And it was that particular turning point that I’d love to go back to, and give some advice to myself at that point. Because there wasn’t really anything available. No guidance, no information on what might come next or how I might feel as I processed this huge new piece of information about myself.
Looking back now over the last year and a half, things have changed so much, and also not that much at all. I feel different, but of course, I’m not. I’m still me, I just know who I am better now and have a few more answers. Sadly, I also now know a few things about that period of time that I didn’t see coming, and part of me wishes I had known sooner.
If I could go back and tell myself some of the things I now know, what would I say?
I’d say don’t expect everything to suddenly work out or feel better. Although it feels like you’ve been given this key that unlocks everything you never understood about yourself, it isn’t that simple in reality. You won’t always find the help or understanding that you need, and you certainly won’t always be able to access the support you’re entitled to. This will hurt and you’ll realise just how strong your sense of justice really is. I’d tell you to hold onto that because it’s important and it matters.
I’d say be incredibly careful who you choose to share this information with. Which I appreciate seems an odd thing to say as I’m writing this in a public blog, but the ship has sailed now for me, and I wish I’d thought harder and longer about it. I’d say be careful and don’t trust people too quickly. Let people show you who they are, and believe what they show you. Brace yourself for some people to react in negative ways, protect yourself as much as you can, and remember that you can’t take it back once you’ve shared it.
I’d say expect to feel all the feelings. The big ones. The hard ones. Expect to feel sadness and grief for the younger version of you who didn’t have a clue who they were or how to support themselves. Frustration that you didn’t know sooner. Expect to feel hopeful that things will get better now. And then devastated when actually they don’t. Expect to feel scared and tired and worried for the future. Expect to have so many questions that you’ll probably never have an answer to. Expect to doubt yourself and your identity. And expect to feel angry, so so angry. Mostly at the world that doesn’t seem to accept you and doesn’t get the fact that this new information you have about yourself has probably saved your life.
I’d say make sure you leave space and time to be kind to yourself, to let things settle and to really take in all the new information you’ll be finding out. Expect some of it to be hard to take in, and sit with it anyway because it will all make sense in the end.
I’d say you’ll find new people who will come into your life who get you in a way you’ve rarely found before and to feel a sense of community you didn’t think was out there. I’d warn you though that this will come with exhaustion and overwhelm of its own and a sense of letting people down because you can’t always show up in the ways you’d like to for them. I’d say try not to worry about that because the right people won’t mind. They’ll be there and they’ll understand the ways you can show up.
I’d say that you’ll find a passion that you didn’t realise you were missing which will make all of the negative emotions at least manageable. I’d say lean into that passion and it will help you find yourself again.
I’d say hold on tight because it’s going to be one hell of a bumpy ride, but you’ll get through it and, best of all, you’ll get through it because of exactly who you are…not despite of it. The ride is far from over and I’m definitely still clinging on for dear life a lot of the time, but for the first time in a long time, I don’t think I want to get off it just yet.