Things I Wish I Knew Pre-(self)Diagnosis

When you’ve just started to figure out that you might be autistic, it can be a really big and scary world to navigate.

So here are some things I would say to my 18 year old self, as I just started going on that journey myself.

Hopefully this might be useful to someone who has also just started their journey too.

1. Things will settle

   At first, it feels like the whole world has been turned upside down. You’ve put on the autism goggles, and now everything, every interaction, every movement, every word you say is tinted with this new colour of autism. It can be overwhelming. And it can be a change. And lord knows we autistics don’t like change.

   
   

   But things will settle. This won’t last forever. You’ll find your footing and life will get better on the other side. All the fog and weirdness of life in that phase is worth it for getting through the other side now knowing who you are and how to live life in a way that suits you, rather than a way that suits everyone else.

   
   

2. Don't obsess over definitions

   I used to obsess over the definitions of things like meltdowns and special interests. I’d sit there pondering if I truly experienced those things, while watching all these different videos and reading different posts that all seemed to define these things slightly differently. And that made things more difficult for me.

   
   

   But meltdowns and special interests themselves are not listed traits of autism. They’re just words the community uses to describe common autistic experiences, and these experiences will be different for everyone.

   
   

   So don’t obsess too much over definitions. If it feels right, then it’s right.

   
   

3. You can have ADHD and Autism at the same time

   For some reason in the early days of my journey, I became very obsessed with trying to figure out if i had ADHD or autism, but I didn’t really consider that I could have both.

   
   

   I knew that I had traits from both, but it never felt like quite enough for either, and it left me thinking “well if it’s not either of these, it has to be something else”.

   
   

   In the end, it’s a combination of both. Sometimes it feels like I don’t fit them well enough because certain traits cancel each other out, and that can make things a little more confusing. But it doesn't always mean that you don't have either, it just means you have both at the same time.

   
   

4. Traits are more than their surface level definition

   It was hard to figure out if I experienced certain traits or not because I struggled to fit certain experiences of my life into these surface level definitions. Especially when your only exposure to autistic traits is the clinical language of the diagnostic criteria, it can be hard to know how your experiences fit into that.

   
   

   Traits don’t have to be concrete. You don’t have to have a minute-by-minute routine of your day to have a reliance on routine. It can present as struggling to get things done without a plan, or doing certain things in a specific way or order.

   
   

   It doesn’t have to be a complete inability to read any facial expressions. It can be difficulty with the more subtle expressions and body language within day to day communication.

   
   

5. Talk to other autistic people

   The most valuable thing for me in my early days was posting on r/autismtranslated, hearing real autistic perspectives, and chatting to other autistic people in discord servers.

   
   

   It’s all well and good reading the diagnostic criteria obsessively and reading every book and academic text on autism, but I think the most valuable thing in the process of self diagnosis is talking to other autistic people. They can help give you other real life examples of the traits that you can’t get otherwise. And you know if you strongly relate to a lot of the autistic people you chat to, chances are you are too.

   
   

   Bonus if you can speak to other autistic people IRL, but of course that's not always easy to access and can be scary, and online is just as good. And it doesn't have to be a deep conversation with a true connection. Just reading comments by autistic people giving their perspective is useful.

   
   

6. Don't feel like you have to pander to others emotions (in regards to telling other people you're autistic)

   I was terrified of telling my parents (specifically my mother) that I was autistic because I was scared of having to face the emotional response to that (as someone who is bad at empathy and shuts down as soon as someone around me is upset).

   
   

   I felt a pressure to tell her in person because I was afraid of coming off as “impersonal” if I told her in writing. But I ultimately knew that that was the only way I would ever do it. So I told her in my own way, through a long email.

   
   

   And it all ended ok.

   
   

   It's ok to do things in your way, in a way that is comfortable for you. Especially if it's the only way it will ever get done.

   
   

7. Imposter Syndrome never goes away

   Imposter syndrome is a bitch. And I still feel it now even with a diagnosis. I think in my early days I thought that a diagnosis would solve all my problems and I would never feel imposter syndrome again. But alas, I still feel it on occaision. It is less often now, but that comes with time.

   
   

   It’s intense for a few months in the beginning, but as time goes by and you build up this bank of new memories, of conversations with other autistic people, and all this new knowledge about autism, It will slowly start to fade.

   
   

   Afterall, If I wasn’t autistic, I think at this point, 5 years later, I would have figured that out by now.

   
   

8. Sensory issues are hard to figure out (and that's ok)

   For a long time I thought I wasn’t really someone who experiences sensory issues/differences. But the trouble is, we have no reference to go off. We only live our life in this brain, and we will never know what it’s like to be in a neurotypical brain that doesn’t experience these things.

   
   

   But over time you can start to notice the differences. Like the fact that people don’t seem to be bothered by this loud music that is giving me a headache.

   
   

   And also, sensory overload doesn’t always present as a meltdown. It can present in other ways, like a headache or nausea. I know now, that's definitely the case for me.

This is just a few of the things I wish I knew in my early days of self diagnosis. If you are also in the beginning stages of your self discovery journey, I hope this may be useful to you.

And feel free to comment with your own insight, what you would have told your past selves!