Journey to my Autism Diagnosis - Part 2

A few weeks ago, I shared the first part of my journey to an Autism diagnosis in the hopes that it might help other Autistic people at any point of their diagnosis journey and also give insight to those who want to understand and support us better.

I wanted to start by saying thank you to everyone who read my article, shared it with your network, reached out with your positive feedback, and asked questions that I will cover in the second part. Let's get into it!

Q: How did everyday stress affect you pre-diagnosis, and how do you plan to approach that now you’ve been officially diagnosed? Is there anything you would have done differently?

I did a Mental Health First Aid training course four years ago, back when I thought I was Neurotypical. I still have the workbook because I am a hoarder, and I refuse to throw anything away ✨ just in case I need it ✨ (I am truly my mother's daughter)

Here’s what I wrote for the exercise we did on our “Stress Container”:

Some observations I’ve made after reading this back 4 years later:

💭 Everything in my stress container is very normal and is still the case today. However, after my diagnosis, I now understand these are secondary stress factors. The root causes are actually:

• Autistic burnout
• Exhaustion from masking and trying to fit in and cope in a world not designed for me
• My basic needs are not being met, either because I deny myself these needs due to still holding myself to Neurotypical standards or not having access to the things/mechanisms I need to meet my needs.

💭 It is HILARIOUS reading my coping strategies and that I convinced myself that if I could ✨ just switch off for a bit ✨ would lower my stress. MISS GURL YOU KNOW YOU CANNOT SWITCH OFF 🫠🫠🫠. The “cry” one is totally legit, though; it can’t beat a good cry.

💭 I listed having a drink as a coping strategy, which sounds about right; I struggled with alcohol abuse for many years. It was my way of relieving myself of the pain of noisy, overstimulating bars and clubs. I now avoid those places, and I am Sober Curious, if I drink on a rare occasion, I'm celebrating something as opposed to using it as an escape from reality.

💭 Overall, the coping strategies I listed are not effective or healthy coping strategies for me as an Autistic person. After my diagnosis, I can begin to understand myself better and shape up better coping strategies like:

• Not suppressing stims and allowing sensory seeking (which I do through sound, touch and movement)
• Prioritising my needs, even if I have to let someone down (eg I may need to avoid social settings or events due to overstimulation)
• I learnt to switch OVER, not switch OFF (something I learnt from Ellie Middleton )
•  Not suppressing meltdowns or shutdowns as they are a physiological process needed to stabilise my nervous system in times of distress.

💭 My stress signature is actually just my AuDHD traits, lol

💭 The concept of stress management and the causes of stress is centred around Neuronormativity. Being able to understand and challenge this has been a key piece of puzzle to helping me manage my stress levels and mental health

Q: Would things have been much different for you if you’d got your diagnosis earlier?

I think about this a lot. I have cPTSD (likely from being undiagnosed for the majority of my life), and I experienced significant triggers after my Autism diagnosis. It unearthed traumatic memories I thought I had buried.

Being an undiagnosed Autistic girl is not just being a bit weird and struggling without routine, it’s having your naivety taken advantage of. It’s being your own worst critic, growing up thinking you’re broken and unlovable.

It’s wearing a mask consisting of little pieces of everyone around you to construct a persona that people might actually like, but they still don't like you anyway. As a result, you completely lose your sense of identity as an adult after a late diagnosis.

So yes, I believe things would have been much different if I had got my diagnosis earlier.

Q: Why did you want to have the diagnosis and a label?

Calling myself Autistic is no different than calling myself a woman of colour; they are all just factual parts of my identity, my marginalised identity.

Whilst some people see a diagnosis and label it as “othering,” i.e. being perceived and treated as fundamentally different to our Neurotypical counterparts, I see a diagnosis and a label as a vessel of liberation.

My Autistic traits were starting to cause problems for me in various aspects of life, some of which I’m not able to talk about publicly. But I knew if I didn’t pursue a diagnosis soon, it was only going to continue to get worse. My diagnosis and label allow me to accept my true self because I can’t discipline myself out of being Autistic.

I'm now six weeks post-diagnosis, and it's been quite the journey. Some days I feel like I'm further back than before my diagnosis (this is called Skill Regression and if you haven't herd of it, I have some content drafted!) and other days I feel like I have a very positive and optimistic outlook to life.

My journey is non-linear, and the most important thing for me is allowing myself to feel and process the grief, not expecting my life to change overnight and using my personal experience as an opportunity to raise awareness about Autism, and specifically in women.

Thank you for reading, I hope you've found this article insightful and please feel free to share this with your network!

If you need to talk to someone about your own journey, my inbox is open and a safe space ❤️