The 7 stages of an autism diagnosis

It’s been two months since I received my formal diagnosis. It has been an incredibly full-on time and I’ve gone through the seven stages of a diagnosis, as coined by Maisie Hill from the Period Power podcast, who is also a late-stage diagnosed autist.

She talks about the seven stages as:

1. Prerealisation

2. Validation

3. Outrage

4. Confusion

5. Despair

6. Hope

7. Acceptance

Stage 1 — Prerealisation

This was me for 40 years. Knowing I was different and that something was going on but not knowing what. Not quite fitting in, not quite relating to my mental or physical health diagnoses, and struggling with work, relationships, and chronic exhaustion.

Stage 2 — Validation

Part 1 of this validation was the moment in our long lockdown here in Melbourne last year when I read the article by Melbourne psychotherapist Tania Marshall, “Moving towards an adult female profile of Autism/Asperger Syndrome”. When I started reading it, I SOBBED. It took me about six tries to get through it because it was just too emotional. That was the moment I finally felt seen/understood/validated, and when I decided to seek a professional diagnosis. Part 2 of this validation came nine months later when I got my formal diagnosis from Dr Janine Manjiviona. I received a 13-page assessment from Dr Manjiviona and a 5-page speech pathology assessment from Top Talking. At this point I was just elated to have a label and that everything made sense.

Stage 3 — Outrage

This is when the table-flipping started. I was LIVID. How could so many professionals have missed it? I’ve been seeing psychologists since 2010 and none of them picked it up. I’ve seen so many specialists about comorbid issues such as “hearing” problems, chronic fatigue, burnout, joint dislocations, and anxiety. Once you know what autism is, you can’t UNsee it and you start to see it everywhere, in characters on TV and movies and in people you know who don’t know they have it. I emailed every psychologist I’d seen since 2010 and told them all in the hope they don’t miss it for someone else. Even now, writing this, I’m still pissed off at how the health system in New Zealand and Australia has failed me.

Stage 4 — Confusion

In the back of my assessment report, was four pages listing various psychologists, psychotherapists, books to read, and websites to visit. I realised I really needed to contact someone who understood autism to help me get more insight into what the 18 pages of assessment actually meant. But I didn’t know where to start, what order I should do them in, and what would be the best thing for me to start with. I went to websites of various autism organisations and nowhere did I find a list of “things to do after you’re diagnosed with autism as an adult”. I just didn’t know what to do or what to begin with.

Stage 5 — Despair

This stage sucked. I tried to get appointments with a psychologist who specialised in autism but the waitlists are incredibly long (6 months, or they aren’t taking patients at all). I had a somatic trauma therapist who was recommended to me passively aggressively email me because she misunderstood my email and then cancel our appointment without telling me. I had a supposed ASD-specialist psychologist ask me read-between-the-lines questions in our first session that I didn’t understand (and that no autistic person would understand) and I got such bad anxiety I had to finish the session within 15-minutes.

At the same time, I had some shitty situations at work with people misunderstanding me and having arguments with me about things that I didn’t understand. I told someone at work I had autism and they started speaking really loudly and slowly to me and told me they were surprised because I “seemed so intelligent and articulate”.

I was also getting very upset by the reactions from those closest to me. Many of my closest friends didn’t message, call or visit me to ask me if I was okay. People that did kept offending me by saying things like that they were “sad for me”, or that it was okay because I was “high functioning”, or that I was “brave”, or that I “shouldn’t let it define me”, or other sentiments that made me feel like either I was now going to be looked down upon as a “lowly” disabled person, and that people were being very dismissive of just how debilitating having autism is.

I had also been seeing a guy and we had a very strange finale to the relationship that probably couldn’t have come at a worse time. I thought we had a really good connection, and we’d been texting every day for a couple of months and had been seeing each other every weekend. He slept with someone else — fine, whatever, I was not as much bothered by that as when I asked, “I thought we had something special going on, do you not feel sparkles when we cuddle?” and he replied with a shrug and said, “I’m just good at hugs.” I then text a friend because I was very upset and they fobbed me off and shut down the conversation and when I questioned why they said, “I don’t know what you want to hear from me.”

This was the moment that my life exploded.

I realised then how much of a social disability autism is for me. I realised I have no fucking clue what other people are thinking or saying, and I am quite literally on a different page — I am in my own world. I realised that I have a very different perspective of what friendship is, what a relationship should look like, and how to talk to or interact with another person. I looked back at many interactions with people and realised that I was actually being bullied for being autistic without knowing, and that I had a lot of internal ableism against autistic people that had been put there by all the snide comments about “weird people” throughout my life that had led me to mask all my autistic traits. I realised that the life that I had been leading was one focused on trying to fit in and to appear as neurotypical as possible even at the detriment of my mental and physical health. I realised I had no autistic role models to look up to and I felt like a fraud to have achieved what I’ve achieved in my life. I realised that my neurotypical mask was so strong and went so deep that I didn’t even know who I was and I didn’t know how to exist. I realised I had been disabled for 41 years and had no bloody clue.

I pretty much became suicidal. It wasn’t that I actually wanted to kill myself, but I didn’t want to exist anymore. I didn’t want to be an autistic person living in a world that wasn’t designed for me, surrounded by people who didn’t understand me.

I told a few friends what was going on, and I genuinely do not think that any of them understood just how life-shattering and life-altering this process was for me even though I had said specifically that I was suicidal. I did not feel supported, loved, or understood.

However, I was extremely lucky to know someone who was going through the same process as me and we would exchange notes every day about what we’d found on the internet that day about autism, and what new symptom or problem we suspected might actually be part of our autism. I was also lucky to have another friend who knew that getting me to go for a walk in nature was what I needed to try to bring back some happiness into my life.

Stage 6 — Hope

After the veil of darkness lifted, I realised that there are a lot of other people out there like me. I connected with some incredible content creators on Instagram and TikTok who were teaching me so much. This was especially helpful in the absence of a therapist. I realised that I have a pretty awesome platform at work and in my position in my career to perhaps help someone feel more accepted at work, or to identify the signs of autism in themselves or a loved one and maybe positively change their lives forever.

On Autistic Pride Day on June 18th I announced to the whole company that I am autistic. I had such an incredible response. I had people privately message me to tell me they are also neurodiverse but were too scared to tell their manager or team mates. I had people message me to tell me their kids have autism. I also had one person message me to say that he saw in his teenage daughter what I had written and that she was struggling at school and that he now thinks she might have autism and what should he do. Throughout all this I’ve also had a number of friends message me after reading my posts on Facebook and tell me they’ve realised they have autism. This gives me hope that I can do something useful with this diagnosis.

I hope by talking about this publicly other people are able to find their way in life, find their people, and can accept a label that right now in society is still seen so negatively — but is actually just a naturally occurring diversity of neurotype.

Stage 7 — Acceptance

I didn’t have the words for my lived experience before and now my vocabulary is growing.

I have been MASKING my autistic traits my whole life but much worse in the past 15 years. I have severe SENSORY ISSUES and get SENSORY OVERLOAD and end up in AUTISTIC SHUTDOWN where I am unable to move and become non-verbal. I have AUTISTIC MELTDOWNS where an unbearable rage builds up inside me that I can’t control. I don’t understand a lot of what people are meaning when they communicate with me, especially when they are communicating verbally because I have a SOCIAL COMMUNICATION DISABILITY. I get extreme SOCIAL ANXIETY when I have to talk to people I don’t know or people I know are neurotypical. I have SPECIAL INTERESTS that I HYPERFOCUS on. I have issues with EXECUTIVE FUNCTION and WORKING MEMORY. I have debilitating chronic pain due to EHLERS-DANLOS SYNDROME (hEDS) that I believe is incorrectly diagnosed as hypermobility.

I’ve never related more or better understood my family than as I do now. I’ve never understood myself more. I feel like I have a new lease on life and am ready to develop and curate a life that works for me. And that’s pretty exciting.

(originally published on a private Facebook page, 12 July 2021)