Autistic Acceptance Month – My diagnosis/discovery story

A dragon in the shape of an infinity symbol that is rainbow coloured like the neurodiversity symbol

The artist for this is @Kayas_Kosmos!

CW / TW // my own ableism

A long journey

My diagnosis took a long time… I’ve been self advocating for ADHD since about mid-2019. When I had my second diagnosis – and correct medication which made me realise I for sure had it.

I want to talk a bit first about the series of interactions that got me here – I really want to pay tribute to some important people in my life. I don’t usually like calling out names – but these people were vital at making me understand so many things.

I had someone believe me in the workplace. This was in 2017, at 34 years old – the first time in my life someone had tried to understand and not judge me. My mentor and lead programmer at RunawayPlay (the most amazing place I’ve ever worked or had the privilege of working at ever) attributed my productivity issues to my ADHD struggles, and not to me personally.

This was a key moment in my life… everything started changing in huge and magnificent ways. I suddenly realised maybe not everything that I had done without knowing I was doing it had been entirely my fault.

It took a while for this to break through to me though. Internalised ableism and a lot of gaslighting have done their work on my brain. I didn’t know what internalised ableism was…

So… this is hilarious in retrospect now. It started with Greta… but my activism had led me to Twitter… a social media platform that destroyed me for a while, then became the single most important thing in my life to help me with my mental health, and even saved my life.

The journey of a ~52.5K Tweets beings with a single interaction…

This is long winded but I remember everything… every step.

This is a Tweet thread from January 31st 2021.

We often talk about Twitter as being a hurtful place – and it totally can be. However – one of my greatest new friendships in life started with a disagreement on here, and the long term result of that disagreement has grown me as a person due to it’s outcome.

I started getting into environmental activism after Greta first got famous. Something about the way she spoke made me realise I needed to step up more. I decided to become an “activist”. I joined my local Extinction Rebellion (XR) chapter in Ōtepohi (Dunedin).

I asked to speak at a council meeting. I addressed Dunedin City Council and asked them to declare a climate emergency. This was the action that was being taken at councils around the world at this stage. I became more active online about my environmental beliefs.

Then, a lot of dubious stuff kept happening with XR. Firstly, their strategy was a scatter shot approach, with no clear vision of direction. It was a feelings based movement based on science. Secondly, and far more importantly, it wasn’t trying to do the stuff it said.

The big issues were that it said that it was all about honoring Ti Tiriti o Waitangi, and that disabled people must be recognised. There was no substantial inclusive action taken on either of these measures. No XR chapter was led by Māori OR disabled people.

There may have been members at this time from these groups, I don’t know. When I went to local chapter meetings, most of the people there looked like white people (careful here not to assume skin colour is a perfect determinant of racial heritage).

At one of these meetings an old white man asked “what the treaty had to do with anything?”. I started feeling uncomfortable – this was challenged quite well I thought from our local chapter people and he was still disagreeable.

I am still in XR at this point – we are looking at how to get the main government to declare a climate emergency as our main course of action. (Because it works so well to make change you see…). A protest is planned in wellington. Around this time I get into an argument…

(My great friend now) @keraoregan claims that XR is displaying a number of problematic things – the points I have raised above are the points she makes – I am pretty hostile thinking back to be honest. I say XR does care about these things, but we don’t have them yet.

Kera gives me more patience than I deserve, she explains her positions, she talks about other Māori and disability organisations that have been doing this work and getting results. She questions why we need an overseas movement when they could back the ones already here.

I say i’ll take it under consideration. What she probably didn’t know is that I started experiencing massive amounts of dissonance at this point – I am all for decolonization – I implicitly believe in honoring Ti Tiriti and giving land back as principles of justice.

I still stay in the movement at this point but I have started reading up outside of Twitter to look into other organisations, I start following Kera on Twitter, she leads me to follow many more disabled people on Twitter. (Starting with @Tinu, @jgboberg, and @SFdirewolf). I start learning about ableism.

Then as if to prove the fact that XR is a colonizer movement home. During the protest in Wellington (deserves it’s colonizer name for this stuff tbh) at some point – all white protestors are shouting Māori phrases. Kera points out to XR that they shouldn’t.

The XR Twitter account attacks her, says that people like her (literally these words) don’t care about climate change and just care about being perceived as virtuous, that XR is taking action at least. This is super insulting for many reasons.

Long before this white bread copy paste of other Indigenous movements even existed, Kera has been working in disabled AND environmental spaces – especially with youth. She’s organised a lot. She’s been to major climate change conferences – representing Indigenous people.

Secondly, you can’t have justice without accountability. You can’t claim to be about honoring Ti Tiriti and then shut out Māori voices because you wrongly disagree with them. It’s at this point I quit – I make it public and I thank Kera for showing me what I couldn’t name.

The main outcome of this interaction has been an incredible friendship. My following of disabled people has made me realise how much I had internalised ableism over my Crohn’s Disease. I start to forgive myself for having a gut condition I have no control over.

I start realising that people talking about hard shit in their life that society deems shameful makes them incredibly brave – and it makes me braver because of it. I come out later this year – a combination of these things in my life and Rosa’s storyline on Brooklyn99 (which I can’t watch anymore cause it’s copaganda).

I start talking about my ADHD on Twitter, I connect with ADHD Twitter and learn more about the struggles of this condition than any medical staff or book has been able to explain. I join the neurodiversity movement. I start following Autistic people.

I’ve been identifying with good #ActuallyAutistic memes from these people a little too frequently, they are describing symptoms unique to Autism that I experience with only ADHD + co-occurring “depression and anxiety”. I’ve been questioning everything at this point.

I’ve discovered how trans people are being harmed online, I start following and supporting trans people on here as much as I can thanks to Kera’s nudge. @CateSpice details the great bravery that it takes to be a trans person. This really stuck with me. I step up more.

Some substantial time later after following her – Cate posts a result of an autism online test. I ask for the link. The online test result returns “There is a high chance you have autism” (paraphrased). Oh. Fast forward to this year January. I get my diagnosis.

I finally met Kera yesterday. It’s been nearly two years I think (I don’t know cause I had to delete all my tweets a while ago – can’t go into it). Over that time, I have become the best version of myself, I’ve become calmer and focus my rage on those who deserve it.

I’ve become anti-racist. I lean into the discomfort of knowing that I am racist inadvertently, I always pledge to do better. I start fighting back against ableism. I make missteps here – another great friend started with a correction of “well intentioned activism” on my part.

Now I am writing regularly again. I have a focus and direction I haven’t had in life for years. I have goals, I have a plan. I have challenges and problems I want to face in life. Thank you Kera. I hope I make up for some of the times people refuse to listen. They should.

Never doubt what a single interaction on here can do.

This wasn’t as easy as that thread makes it…

CW / TW // suicide ideation

I went through acute Autistic Burnout – this was a void that I thought would consume my soul. I hypothesise that my OCD and ADHD make this worse – it intensifies the effect. I still haven’t fully recovered from this.

I had basically broken down completely, I didn’t think I was going to live, and I hated myself. But a few people saved me. In December last year after three months of horrific burnout, on medication that made me super unstable… I had someone reach out to me… I had been breaking down almost daily – we had the NZ election which was stressful, we had so many things happen… I was hanging by a thread.

Why didn’t I get diagnosed in October when I took the test?

My own ableism based on some terrible science… [I have a personal hatred of Simon Baron-Cohen for a reason]. I thought Autistic people didn’t have empathy. I was hyper empathetic – I was like Will from Hannibal – and the show creator had said he was “the opposite of Asperger’s“. I couldn’t have it.

Then one day I randomly reached out to @ADDeeCee or she reached out to me… I can’t remember this exact detail.

I shared trauma for the first time ever that I had never talked to about with anyone (before I just started leaking it regularly on Twitter). She said “wow, that sucks, this reminds me of…”. I wasn’t judged. I was accepted – someone finally got me – I could start to heal. Finally.

She informed me that I probably was Autistic. She said Autistic people do have empathy – often too much. This started the biggest wormhole of Autism research and hyper-fixation that the world has ever known. There was no science on co-occurring ADHD & Autism in adults. At all. No instructions on how it presented.

She made me realise I was Autistic… She saved my life. With regular chats from Dee & @squishdivergent I got better.

I didn’t come to accept I was Autistic until after my ‘official’ diagnosis in January this year – and reading Naoki Higashida’s book ‘The Reason I Jump’ confirmed it for me more than my psychologist who called me ‘Atypical’ (I HATE THAT TERM).

I’ve realised just how Autistic I am over the last four months. I had the luck of dealing with a lot of internalised ableism because of accepting ADHD by the time I got this diagnosis – so I undid it faster – but it was still brutal.

I wrote a poem about feeling seen for the first time in my life… this is dedicated to everyone who has helped me – just by Tweeting. But Dee is the voice that cried out. She’s the person responsible for saving my life, and Squish is definitely a huge part too.

Cast Adrift

Forever floating in an ocean
Drifting among the waves
Always night and I am alone
Treading water for survival

“You don’t even float correctly”
I hear their voices in my head
I feel wrong for living
Often I’ve been told to quit

I swim but only find darkness
I seek refuge on a passing boat
Only to be given
An anchor by the captain

I keep swimming
If I don’t I’ll die here
I still want to swim
Don’t I deserve to be on land?

I’m starting to believe them
I’m the burden they made me
When a voice cries out
Figures in the distance

They are calling to me
I start toward them
My anchor catches often
Waves break on top of me

I choke and splutter
Might it be too late?
My arms are tired, my body broken
But their voices are louder now

This new hope renews me
Dreaming of the day break
As I cast aside my anchor
And join them on the shore

How do you ever truly thank people for that? Paying it forward.

I took that same test recently… after I stopped masking but still was suffering the effects of burnout – I’ve changed.

Autism results very high
I’ve achieved PRO LEVEL AUTISM!

Daily blog challenge

I will be writing every day on being Autistic for April using this list of prompts:

Alt-Text Format with links to other blogs – Autistic Acceptance Month – 30 Days of Acceptance and appreciation:

Published by roryreckons

I am an ADHD/Autism Coach as well as ADHD/Autism/OCD/CPTSD advocate and independent ADHD/Autism researcher. I am an ADHD/Autism Coach who trained through the ADD Coaching Academy. I write mainly about ADHD/Autism/OCD/Mental health issues, but will also discuss morality, abolition, and current affairs occasionally.

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