Waiting for diagnosis & keeping it hidden.
Here's a message I would go back and give to myself and anyone else who is experiencing a countdown to an autism assessment and wants to feel less alone.
When it comes to getting a diagnosis, I've seen there are broadly 3 types of people:
People who have a suspicion that they are neurodivergent but would prefer not to think too deeply about it or look into it. This could be for a whole range of reasons including looking at the world in a way that accepts and celebrates the diversity of everyone's brains, and / or doesn't see the value in labelling people.
People who have self-diagnosed. From researching into the experience of being autistic, ADHD etc - they see these traits in themselves and this captures their experience so accurately and deeply that they know without a doubt they are neurodivergent. They may feel that a formal diagnosis is unnecessary, a waste of money, time (so many forms!!) or due to systemic oppression that a person can experience due to their race, ethnicity, socioeconomic status, sex, gender… there could be some doubt that they will be seen and understood in the process and so understandably want to avoid the whole thing entirely.
People who have the suspicion, but are not willing declare to others (or even themselves) that they are neurodivergent without this being confirmed as part of a formal diagnosis with a professional. Perhaps they will decide to keep their assessment private until they receive more concrete answers, and then they can decide who they want to tell.
I'm the third one.
There is no 'right' or 'wrong' in any of the experiences I've described above. I have met people that fit each of these categories, or have moved from one category to another. Everyone has their reasons and every choice is valid.
A downside of option 3: WAITING FOR EXTERNAL VALIDATION.
And in the process of waiting: feeling so alone.
This sums up what waiting was like for me:
You know you know. But you don’t KNOW you know - because you’re waiting for someone to confirm it without a doubt.
Only three people knew I was in this waiting state the whole time - two of them out of necessity because they were part of my assessment as 'informants'. I allowed myself to fantasize about what it’s going to be like when I finally can say for certain. The people I would tell, and the exact words I would use to tell them.
Below is from my journal on 8 May 2024. I wrote this one month into waiting - when there was still a reasonable amount of self-doubt that I could be autistic, and gives a peek at my reasoning for not telling my friends what was happening for me:
I just want to knoooooow whether this autism thing is real or not. I'm now looking through my whole life with a lens that I AM and it's making things make so much sense - but what if I'm not?!! And I want to be able to talk about what I'm going through right now with someone, but it's too embarrassing to say because what if I'm not? I don't know why that feels so embarrassing but it does. Like: oh you thought you were special? You thought there was an 'excuse' or a reason for your behaviour? For your struggles? Nope, you're just a regular typical person - no accommodating for you. Just suck it up.
Ouch, it's super hard to read to read that back. My lovely brain was finding it hard to have compassion for myself. Yep I’m advising self-compassion on the daily to my clients, nope it does not mean that I always find it easy.
The fear of being a 'typical' person who 'just had anxiety' was so real for me, and I know this is something a lot of people who are waiting for their autism assessment experience as well.
Here’s what I wish I could go back and give myself and anyone else who is experiencing The Waiting is this message:
No matter what, self-compassion is always available to you.
It’s not something you earn. It’s not something that is conditional on the outcome of your assessment.
It’s not something you have to wait for. You can begin right now in this moment if you like.
It’s not easy. It’s a brave thing to do, because it requires you to accept yourself fully as you are.
Not because you’re autistic or neurodivergent. Not because you’ve had a really hard time (and I know that you have).
But just because you are the messy, complicated and beautiful human you’re meant to be. Can you try accepting that, breathing that in, just for a moment?
And if you are waiting, please give yourself a big hug!! I know how tough it can be. Perhaps you feel like you’ve started to unmask already. That’s another whole thing - and what I plan to write about next time, so stayed tuned and take care of yourself 💛