Journey to my Autism Diagnosis - Part 1

After taking a hiatus from Dopamine Diaries, I'm back with a beautiful rebrand and a big story to share - my Autism diagnosis journey!! ❤️

On 13th April 2021, I was diagnosed with ADHD. My post-diagnosis journey involved starting ADHD medication, which really helped bring some “quiet” to my brain and also unmasking.

It was both of these things which started to make my Autistic traits apparent, but I’d incorrectly labelled them as ADHD traits. It was only around 18 months after my ADHD diagnosis that I realised they might actually be Autistic traits.

I spent the next 12 months going back and forth. “I must be”, “no, I can’t be”, “I must be”, etc. Until I finally self-diagnosed myself as Autistic in November 2023 and got my medical diagnosis in May 2024, which I shared publicly for the first time in this post.

In this article, I’m going to share a little about my Autism diagnosis journey. You can read more about my ADHD diagnosis journey in this newsletter article here, as this article will focus on my Autism diagnosis journey.

Noticing the Autistic Traits and Researching

I started to read things about how ADHD and Autism overlap, and it was this particular Venn diagram which I found on Twitter (remember those days!), that really made me seriously consider that I could be AuDHD, not just ADHD:

I then came across this checklist for Autism in females. This checklist was particularly helpful compared to others I had seen, which were very much aligned with the stereotypical presentation of Autism. Once again, women had been neglected in medical research as if we didn't bloody exist!! I got hyper-fixated on creating a colour-coded Notion page to highlight which traits I identified with and my notes (spoiler alert, almost ALL of them). The irony of doing this is not lost on me... 😆

The extensive research and finally meeting more AuDHD women gave me more and more confidence that this could definitely be it!

A few of my Autistic traits:

• Very low threshold for sensory overload - a lot of overlapping sounds that are disjointed can cause me to be extremely dysregulated
• Echolalia - repeating sounds or phrases over and over.
• Alexythimia - I am unable to identify emotions beyond neutral, good or bad. If I feel my heart rate go up or my face goes warm, I know I'm angry, but that as far as it goes.
• Social communication issues - I am unable to detect sarcasm or pick up on jokes. I can't read people's true intentions and can't read non-verbal cues. I rely on pattern recognition and scripting for conversations, which means I thrive in 1-1 settings but big, unstructured group settings make me very anxious.
• Info dumping about my special interests - something I have been made to feel very guilty about and become embarrassed and withdrawn, but I can rarely control it

Embarking on the diagnosis

In November 2023, I faced various issues that I won’t get into now, but I realised I couldn't deny my identity any longer. If I did, it would continue to cause me more problems. So, I asked my GP to refer me for an autism assessment. I couldn't afford a private diagnosis and expected long NHS waiting lists in my area, so while waiting for the medical diagnosis, I decided to self-diagnose and share it with the world.

The response from people was very positive and welcoming, and I was pleasantly surprised that no one questioned the fact that I was self-diagnosed. I am a vocal advocate of accepting self-diagnosis because a medical diagnosis is not accessible to everyone and being able to self-diagnose can be a huge pressure relief and so liberating. So if anyone is reading this who is stuck on a lengthy waitlist for a medical assessment but has self-diagnosed, your self-diagnosis is valid and a piece of paper won't change that you were Autistic before and will always be.

Getting the assessment

As I cracked on with my life and my new self-diagnosis, I was quite surprised to get an email from Axia in February, just four months after my GP referral - I had an appointment for my Autism assessment in May!

Lots of people wondered how I got the appointment so fast. Honestly, I don’t know myself! It was through the NHS, and I didn’t even use Right to Choose. (read more about RTC here). I felt comfortable with my self-diagnosis, and I felt there were others out there who needed the medical confirmation more than I did, maybe to get the people around them to stop being in denial or access support at work.

Before my assessment, Axia sent me a form to fill out. I didn’t need any family members to contribute. I also prepared my own notes since my memory can be unreliable. I also looked into Axia and was relieved to see so many positive reviews, especially from women who felt understood beyond the biased white men-centred medical model. If you're on an NHS waitlist, consider Right to Choose for Axia, as I had an overwhelmingly positive experience with them!

My Autism Assessment

My assessor just happened to be a woman who was also ADHD AND AUTISTIC. You can only imagine my relief as I thought, “thank god she will probably understand me!!”. I was so worried about my not-so-stereotypical Autistic presentation!

I've been told by others who have had Autism assessments with other providers who were asked to do the most ridiculous things to "prove" they're Autistic, like being told an emotion and to "portray that emotion on their face". Luckily I didn't have any of that bollocks; my assessment was focused on each of the diagnostic areas outlined in the DSM-5 and ICD-10, the traits which I presented with and some real-life examples for each.

The outcome was as expected: I am, in fact, Autistic. It was a relief to get that extra little bit of validation to remove any tiny bits of self-doubt in my mind!

Whilst I wish I could have had both my ADHD and autism diagnoses earlier in life, I’m fortunate to have received them now. Both diagnoses have given me a level of self-compassion and liberation that I could only have dreamed of.

I am so passionate about challenging stereotypes for people like me who don't "feel Autistic enough" or "look Autistic" enough to other people. Autism does not have a look; it's what you are inside. Low support/high masking ≠ low impact.

If you enjoyed reading this article, please feel free to share this with your network, or anyone who might benefit from reading about my experience of getting an Autism diagnosis, I hope I can reach and help more people out there like me!

And I’d love to hear from you in the comments. Is there anything I haven’t covered that you’d like me to cover in part 2 of this article? ❤️