Autism Acceptance Month – Sensory Life

The artist for the above image is @Kayas_Kosmos!

I am actually pretty exhausted. The worst sensory issue I have is that my skin tingles a lot. I can feel my teeth at all times since burnout… but I wanted to talk about hyperacusis – my sensitivity to sound. This is a Twitter thread that I have unrolled as a bit of a hacky way to talk about sensory life – I actually nearly forgot I needed to do this today – guess I used a knife or two yesterday instead of spoons when I wrote two blog posts.

Hyperacusis

My musing about the sense of hearing. I have hyperacusis (high sensitivity to sound). It’s adaptive. Very highly adaptive. After constant interoception about this over a number of days/weeks and retrieving a lot of memories I have a few things I think are true.

  1. If there’s no noise – my mind will generate noise in high pitched frequencies (tinnitus) – this is always actually here though even at other times, I am just distracted from it.
  2. High frequencies are the biggest issue for me – anything in the upper end of treble range can interrupt thought. I think the closer it is to the tinnitus range that I always hear the more distracting it is, and the worse the interruption.
  3. Environmental noise is the biggest moderator of the level of my hyperacusis – I can use a massive combination of white noise effects to drown out any distraction from noise – but I have to filter the treble range out. I do this with MyNoise.
  4. My hyperacusis is worse at night than during the day – this could be easily explained by the relative level of noise where I live – insects are far less frequently around me at night – there is little environmental noise as it’s night.
  5. I can’t hear the TV unless at extreme volumes with environmental noise that might not seem that distracting to other people, but the relative distance to the noise doesn’t seem to be an issue – it’s like attenuation of sound doesn’t occur almost.
  6. The volume at which other people listen to things is often unbearable to me – I don’t understand people who put their music over like 1/4 volume. I used to go clubbing and spend most of the time outside… because it was “too much”… I know why now.
  7. This makes social situations incredibly hard for me because of the lack of attenuation compared to other people – it means that audio data is as loud to me from tables away as it is for people close to me. I can filter this effect but not well.
  8. Alcohol somehow dampens this effect, or at least gives me the perception that this effect is not occurring, but instead I am tunnel visioned into whatever I am trying to listen to – I think cannabis might do this too.
  9. On top of this it causes me stress – every sound is a potential stressor, if anything is in a range or loudness that I can’t stand it causes misophonia (a form of synaesthesia tied to irrational emotion). I think this is one of my main reasons for being drained always.
  10. Noise cancelling headphones are an accessibility aid just to deal with the world for me… I still have to deal with bright light as a I have glasses and cannot afford to dampen light as it’s too expensive. So I have constant stress just existing… Good times.
  11. Which leads me to this question… Is hyperacusis just hypervigilance permanently to sound? Is this an adaptation to something? Was this a needed skill? Combined with ADHD I can go without sleep, and I can scan and identify really fast… I would have been a good ‘guard’.

Daily blog challenge

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

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

The dark side of undiagnosed neurodivergence

TW / CW // substance use, childhood sexual assault, sexual behavior, addiction

None of this is for sympathy. I don’t need you to feel sorry for me. I don’t – I survived.

I have had substance use issues in my past. I don’t need a chip to claim sobriety, I don’t need all or nothing thinking. I am not ashamed of any of my drug use. It was a logical response to a world that didn’t want me in it, so I took the only way out that wasn’t ending my life – I escaped reality. I was simply trying to escape from the endless wreckage that was my life.

I have only ever been addicted physically once to a drug, I’ve had mental addictions to a lot of things.

It started young. When I tell you these stories – I don’t want you to blame anyone in my family for what happened. The propensity for people to blame mothers, fathers, or siblings is just wrong. We were all failed by systems that were not designed to support us. We did things to each other that we cannot take back. No one in my family has a diagnosis – I suspect certain things, but I have no proof.

Childhood (pre-12)

I hated myself young. I was bad at school. I was disliked by teachers. My parents divorced at age 6. My mother was stressed and working the whole time. The day my parents divorced I went to school and I was caned across my knuckles for arriving late. Even though I was in tears. Mrs Edwards was a horrible person.

Before this age I was molested at a McDonald’s birthday party by an adult – I didn’t know what it was, but I remember being told to “keep it between us” from a family friend that took me to go to the bathroom. I don’t need to go into details.

I had few friends at school. I had some people I hung out with for a while… but we were severely impoverished. I changed schools at age six. I changed schools again within two years.

We were renting always – and we had flatmates at this point.

I ended up staying over at friends houses as a form of child care and due to my previous abuse I kept showing my genitals to other kids. I thought this was how you made good friends ? I don’t know I just know I did this a lot. I got caught by a female friends parents and was sent home as a “disturbed child” – my Mum was livid with me. I never did this to girls again.

I loved burning things. I never wanted to be a bad kid, but I did a lot of weird stuff. I used to burn a lot. I love watching matches burn. I still love flames – but I know they are not good. I never burned anything of significance – the worst was a bamboo bush out the back of our house. The fire department got called.

The first substance addiction I found was solvents. When I was young I used to love “smelling” marker pens. I didn’t realise but I was doing this for the high. I did this quite a lot. I was younger than 10.

At age 10 – I started smoking. It was a thing that the bad kids did – for the first while I did this I wasn’t actually inhaling. I was an asthmatic kid – so this was incredibly destructive for me. I used to be the one who had to approach random people, I guess these adults who bought them for me were probably just like me at some stage.

I started drinking but not heavily at age 11 at intermediate after school with the other misfits in school. By this stage people had reinforced to me that I was an atrocious so I just leaned into it – I remember thinking it would be cool to be the kid in Robocop 2 who’s a criminal because he’s liked at least – I’m not going to deny there was conscious choice at some of the times I did stuff. It was usually always based on naive faulty logic.

When I was about 10 or so – I went to a Pog Tournament at Aotearoa Town Square – there I saw a ‘huffer’ she told me about how cool it was to do solvents. They told me I could do it with fly spray, butane, or air freshener.

I started doing this a lot – Mum was confused as to why we were going through so many of these things until she caught me – I used to pass out a lot – I am extremely lucky I did not die from this. It’s fatal in so many cases.

Teenage Years

I tried cannabis for the first time at age ~13… One of my friends lived in a place that barely had parents. So we hung out there a lot. An older girl ended up “smoking me out” for the first time here. I was in love – my mind slowed. We found out how to find tinny houses in our neighbourhood and it was a pretty frequent occurrence along with cigarettes…

You might be wondering how a young kid manages to afford this stuff. As well as stealing, which most of the crew I hung out with did – we often had pocket money. We used that.

I got the internet really early. The one thing that Mum did that was awesome was to get us the latest technology – we were not rich by any measure – all my clothes were second hand, but she worked incredibly hard and would not eat at times just to ensure we had thing we wanted. I had computers from about age 8 onwards. But the internet came out around age 12 or 13 when we got it.

CW / TW // sexual assault

However I sometimes got money in other ways… This next part is going to be hard to hear – I’ve never discussed this before. Not even with my family or my wife.

With it came IRC. A way to chat with people on the internet. I was hyper sexualised as a child – although I realised that my abuse as a child was not ok – I was older now – so I had a ‘choice’.

I thought I was grown up – way more mature than I was. My Mum was working, my brother was off living his life at times with his friends. I was alone.

In the dark corners of the internet, I found an IRC channel that connected older men with young boys. It was a way for me to feel ‘special’. Someone wanted to be with me. I arranged multiple times to meet men who were far beyond my age for sexual encounters, some as old as seventy. They knew my age. They knew what they were doing.

They gave me “pocket money” as a reward. I’d lie to my Mum about staying at friends houses – only to be abused by old men. They told me I was special, sometimes they didn’t. Sometimes I came home with unexplained bruises. It was the bullies at school or I had got into a fight with my friends, I would say.

I didn’t know this was wrong. Sex education talked about not doing stuff to kids and it talked about opposite gender interactions but nothing to do with same sex – so I thought what happened to me as a child was wrong but now I was old. An old soul… I didn’t realise I was still a kid. I was naive, I didn’t know… I just didn’t know.

I consistently used cannabis, cigarettes, and alcohol whenever I could. One of the worst times I ever got drunk was at a cast party when I was fourteen for a play was in. I drank enough that I probably should have died – I spent the entire night throwing up on myself in the shower – I thought I might die. I’ve been close to this a lot.

The other addiction I got here was to the game CounterStrike – it was a mod for the half-life engine at this point. I started missing a lot of school to play this game – it was incredible for me – I was great at it – inconsistently, but when I was on fire I was near unstoppable. I got huge into edgelord culture – I had the handle “Rape&Pillage” at one point and ended up with a guild named after me…

I dropped out of school at 17 to go to University… I was playing a ton and not going to course I was immersed in a bad environment. I was a shitstain of a human who was saying horrible shit that would have hurt so many people. I didn’t realise how toxic this was. My lack of early moral education has been a huge source of grief for me.

Then something happened… something that changed my perspective.

I started to realise the toxicity of this culture in 2001 at 17. September 11th happened. I tried to play a few games to take my mind off it – people were spamming “Terrorists Win” spray paints with the Two Towers – I was broken from seeing this and people crying on the news with my unknown hyper empathy – I knew I was doing something incredibly wrong – I left this culture soon after – I also turned 18… now I started to speed run my life derailing.

I’m an ‘Adult’

I can’t give an accurate timeline here – someone I knew gave me ecstasy and a ticket to a rave for my eighteenth birthday. My world changed… Ecstasy was unlike anything I had ever tried in my life. I felt connected to everyone and everything for the first time in my life – there was no fear, no anxiety, no 9/11 – the world was a safe place – maybe this is what neurotypical people feel? I don’t know.

I got a job working fulltime as a barista – I was working 18 hour days and then my weekend would start on a Wednesday and end on a Sunday… sometimes… I actually have really fond memories of this time and the people I knew and met, but it was a drug filled craze. I basically went through the entire catalogue of narcotic substances that were available in New Zealand. The only rule I had was to never inject.

I did LSD here – that was awful for me – absolutely awful – that experience scarred me and gave me facial dysmorphia for 10 years – whenever I looked into a mirror I saw a distorted version of my face – it was folded on itself… It’s hard to explain exactly but eventually it came right. LSD is an incredibly powerful substance and should be used with great caution always. It could have done a lot worse.

G/GHB/GBL/Fantasy – Liquid E – This is the most fucking dangerous drug in the world… It’s usually used as a date rape drug or by some bodybuilders to allow them to push through pain. This was the main drug I could afford – it was dirt cheap compared to anything else. It was also extremely bad if you got measuring it wrong – you needed to use a syringe to measure it – but you didn’t inject. The difference between 0.5ml and 1ml and the strength of the actual product could be fatal, and put people into comas.

One of the first things I had learned from someone who had been doing it for a while was the adage “you can always have more but you can’t have less”. This lesson was a vital one for me – although I was clumsy as shit generally, I was obsessive about making sure that people didn’t overdose. I became a bit of a control freak when I was allowed being the measuring guy.

When I say this drug is dangerous as shit I mean it. Multiple times I had to breathe for my friends. I am pretty sure that a lot of my female friends got abused by men around me on this – but I was too naive. I was abused by other men twice in bathrooms on it. Looking back I hung out with some questionable people as can be assumed in this sort of environment.

I was starting to realise that I was definitely bisexual, and maybe I was just gay – nothing was clear here. I didn’t know what labels I was – I just wasn’t attracted to just girls. I would later discover – I am attracted to anyone – as long as they are attracted to me.

On my watch ONLY one person overdosed on GBL. Only… I ended up riding with them in an ambulance while someone else I knew was having a mental breakdown that was close to me. This was happening at the same time… and doctors were screaming at me to know what my friend had taken when we arrived. I thought I would go to jail if I spoke honestly so I lied… I hated myself.

This was the lead up to my first “mental breakdown”. I had fallen in love with a man – it wasn’t even like we hooked up either. I just read way too much into the situation. This kinda started a mental breakdown process. Getting rejected in this way broke me – I had never been as vulnerable at this point – to actually admit that I might have feelings for a man.

I was using meth amphetamine too at this point… I ended up on a three day binge from Saturday to Tuesday morning… when I ended up going around looking for meth with a random woman I had met… at 3am… on a Tuesday. It was at this point I knew my life was broken. I knew that I needed help.

I got help… My Mum took me back – I ripped off some flatmates a weeks rent saying to take it out of my bond cause I thought it worked that way. There was a lot of my past I regret.

I still had drug issues at home – but I got stable employment… I also started to get promoted and I was doing well in my career in tech support. Then I got hit with the next addiction…

World of Warcraft… I think I probably averaged about 2-3 hours of sleep every night when I got this game. I would be working fulltime and then come home and I’d stay up for hours playing it – it was a perfect environment for me. I loved it. I still love it – it taught me a lot of skills, I also learned a bunch of useless knowledge. I probably have around 10k hours in the game.

I went overseas… I did more drugs in Sydney… I worked at a job I hated. I did a lot of cocaine… none of these drugs ever seemed to “work” like others described them… I figured this out later.

I had alcohol issues mainly… I stopped drinking after a particularly bad night in Sydney at a work Christmas party when my boss who was awful to me started trying to be all nice to me and telling me I reminded her of her son… I lost it and told her to “Fuck Off” so loud the entire bar stopped and looked. I was put on a final warning on the Monday… I was so drunk here I slept under my desk at work.

I woke up the next morning and I had psychosis almost from the memories of the night before, I kept having visions that I had killed someone with a car too – I would find out 13 years later that this was due to OCD. I was having intrusive thoughts but I had no idea what they were – so I thought they were real. I obsessively checked the news for weeks to look for a death, but none was reported. I still sometimes believe it happened. I don’t drink. Not anymore.

I ended up getting addicted to one drug. When I returned to tertiary education to get my Bachelor of Software Engineering before being diagnosed with anything – not even ADHD at this point after being denied a few years earlier – I started using ‘legal’ cannabis – which was actually just synthetics.

This shit was addictive… physically addictive. I actually hated it but by the time I realised I was addicted it was far too late. I would have to smoke this every two hours, or I would get unbelievable withdrawal symptoms. This is something our government had legalised instead of cannabis. I thought it was safe due to this… It was not.

I ended up lying to my now wife during this time to buy product. It was awful. I was so addicted. She stuck by me through it. But at the end of the year of course – she told me that she couldn’t see me do this, asked if I had lied to her and I admitted it, and then we both agreed that I should stop.

The withdrawal from this drug is the worst thing I have ever had… Ever. I was unable to sleep, I had full body cramps, I was sweating continuously, I couldn’t eat – except for a can of pineapple a day – for over 20 days before I felt ‘normal’. This stuff ended up killing over 50 people in New Zealand. Cannabis doesn’t have a single death in history from overdose… Drug laws are absolutely ridiculous.

Things I never want to hear…

I never want you to judge people who do substances. I never want you to shame people who use substances. For me I have no need for them now I know who I am, and I ended up having to fight to get diagnosed and treated for ADHD because I was honest with my doctors with my substance use.

The worst substances I’ve been put on that had far worse side effects for me personally were ones I was legally prescribed, all but one mental health medication has given me side effects ranging from weight gain, to nearly killing me… but those are ‘acceptable’…

This world makes no sense sometimes.

There’s more I wish I could say… I just don’t want to infringe on the rights of my friends to their privacy. It wasn’t all bad. I survived.

I saw my experience and almost mirror like representation of these years in Rue in Euphoria US. There’s a line in this that explained my relationship to substances – this is what I need you to know…

“To tell you the truth, drugs are probably the only reason I haven’t killed myself.” —Rue

It was true for me… it’s probably true for someone else too. I never thought I’d make it to 20, then 25, then 30, then 35, then 40… now I finally want to keep living. People used to make bets on how long I’d live – this is the world I existed in.

There were lots of time I wanted to end it – if I had this is what I felt if I hadn’t made it or gotten my diagnosis. If I hadn’t learned who I am.

"You said you weren't gonna be here much longer. How do you want your mom and sister to remember you?"
"As someone who tried really hard to be someone I couldn't"

Autistic Acceptance Month – ‘Favorite’ Autistic-owned Business

The artist for the above image is @Kayas_Kosmos – support her business too!

Please note I have an aversion to playing ‘favorites’ – so it won’t just be one. Autistic people can be unemployed or underemployed – please spend money to support them!

Here’s a list of some businesses run by Autistic people that you should support!

AutismRocksCeramics – sell some incredible Ceramic art.

StimTastic – “Stimtastic is affordable stim toys, chewable jewelry and fidgets for autistic adults and teens as well as individuals with SPD, ADHD, dyspraxia . . . everyone who stims!”

asenseofself – “Marble Mazes, Bean Bags, and other Fidgets/Stim Toys

Retrophiliac – Bright and Vibrant Art by Autistic Artist Margaux Wosk

HappyBlackCloud – Handmade ✦ Animals ✦ Nature ✦ Alternative ✦ Autism

PlanInspireCreate – Stationery, illustrations and planner inserts

A Novel Mind – a resource for exploring children’s literature that addresses children’s mental health and neurodiversity issues.

Neuro Pride – a selection of products that celebrate neurodiversity and help people show pride in their differences!

Grey Alien Games – We make PC games suitable for the whole family. Please try them out – we’re sure that you’ll love them!

artiecarden – makes a lot of free content online mainly focusing on Queer, Disabled, or Bookish themes.

MyClownShoes – handmade dm to custom order ^-^ support an autistic trans artist today :p all sales final

Twofold.swiss “In twofold’s in-house talent factory we train people with Asperger syndrome to become the professionals of tomorrow in the fields of design, coding and interactive media design.”

Devyn Sinclair – writes steamy Reverse Harem romances for your wildest fantasies. Every sexy story is packed with the right amount heat, hot men, and delicious happy endings.

wxtheautismstorm – an Autistic broadcaster about to launch a small weather forecasting business.

There’s also an excellent thread of businesses to support here:

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:

Autistic Acceptance Month – ‘Favorite’ Autistic Blog

The artist for the above image is @Kayas_Kosmos!

I have a massive aversion to the word favorite. I am an egalitarian – I don’t really think that I have a favorite anything. I respect other people having this but for me the word favorite has a connotation that I just don’t understand. I think it comes from having a strong aversion to people making judgements about me – playing ‘favorites’… There’s someone who I interact with a ton that has like 500+ blogs who’s name and blog are escaping me… please if this is you I AM SO SORRY your blog has been super influential but my brain is betraying me at the moment. //EDIT: Added Autistic Zebra

Some of my ‘favorite’ blogs and blog posts…

There will be ones I have missed, and ones I still need to read – all of these will be informed by the recency bias, and I am doing this at speed – but i’ll link to their Twitter accounts where possible as that’s where most of my interaction has been.

Kellian Cruickshank‘s blog – Medium Blog Link – Words cannot express how much they helped me with my own education. They taught me more about challenging pre-conceived biases I had about being Autistic and constantly call me when I slip back into old habits or try and interact with bad structures. They got me to finally understand anti-racism on a far deeper level (something I will be writing a blog about). They also taught me to question the taxonomy of mental health diagnoses – (this is another blog coming soon). Their blog on Blackness x Autistic is something I believe that all non-Black Autistic people should read.

Erika Heidewald‘s patreon – Patreon – An excellent advocate for critical psychiatry and a huge part of helping me undo my own internalized ableism – unapologetically Autistic and I love them for it.

Emily‘s blog – Authentically Emily – an amazing Autistic author who made me come to terms with my diagnosis after realising I was Autistic. Her guide on what not to say to Autistic people is a highlight here.

AutSciPerson’s blog – Autistic Science Person – an excellent resource for current science information and a lot of understanding of many issues within Autistic science especially. Their guide for parents is amazing.

Katie’s blog – Weird Sensitive Creatures – another great author with an excellent blog post on internalized ableism which is my go to blog for people learning to accept themselves for who they are.

Jorn Bettin and Autistic Collaboration – An excellent series of blogs about Autistic Culture, education systems and a raft of issues such as bullying in the workplace. Essential reading.

Neuroclastic – a blog that features a number of authors – the communal definition of Autism by Jorn again is a great one. I also like Weavers and Concluders by Terra Vance. I am definitely a Weaver.

Pete Wharmby’s patreon – Patreon – an excellent advocate and one of the main people who made me realise I had Autism. Their patreon is amazing – they are on hiatus at the moment so I will respect their privacy by not linking their Twitter.

Jamie and Lion’s blog – spacedoutandsmiling.com – An excellent Autistic blogger who helped me understand that I need to aim for content rather than happy because happy doesn’t make sense to me.

Melissa Murphy‘s blog – Autistic Zebra – which has an incredible amount of content. They are currently do 30 days of speaking out against ABA (Applied Behavioral Analysis) something we all disagree with as adult advocates.

I’m really sorry to anyone who I have missed or just not been able to think of at the moment. I really appreciate everyone who talks and has written because through your words I have discovered who I am also.

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:

Autistic Acceptance Month – The Autistic Community

The artist for the above image is @Kayas_Kosmos!

Where to start?

Imagine your whole life you’ve been walking around without any understanding of who you are, why you do things, why others seem to hate you for doing things, why you’ve been constantly excluded… Hated by people for being you, including those who are supposed to love you, denied and gaslight by people who were supposed to teach you things, made to believe you are stupid, and broken.

Then one day someone says: “Hey I get you, I fundamentally understand who you are as a person”.

The ripples become tidal waves of understanding…

Then you feel less alone. Then you start learning from a group of these people about ways to deal with the negative stuff you actually want to change.

You understand that feeling things too much sometimes is a common trait.

You understand why you had a “mental breakdown” that you couldn’t explain that seemed to pull you into a void where there seemed like there was no escape.

You believe that you are not insane. You start moving away from the void… each day a little further from it. The crushing anxiety still wanting you to return.

You read the work of a 13 year old non-speaking Autistic teenager named Naoki Higashida, and realise that everything that you know about “severe” Autism is wrong, and that you are definitely Autistic.

You find out that everything you ever knew about Autism in general is wrong. It’s based on bad science and it’s being used to make the lives of Autistic children hell.

You each day learn some new incredible information about a special interest of someone – who has a highly detailed knowledge of that area.

You start to realise how many Autistic people are around you but don’t realise. Musicians, doctors, scientists, friends, family.

Everything that you hated about the world because it seemed unfair and unjust is no longer you being sensitive. It’s you being logical and understood.

TW / CW // suicide

You go from writing this poem in the middle of Autistic Burnout when on suicide watch in hospital:

The March

Black dogs at the door
Have begun howling like wolves
We’re not safe here anymore
Fang and sinew marches in

The sanctum is breached
Everything’s all falling down
They leave nowhere unreached
Fate so cruelly marches in

Now we’re all out of quiet
Only screams in this place
All we did was deny it
Forever darkness marches in

Dawn breaks oh so silent
Muted light seeping through
It somehow seems violent
There’s nothing left to march in.

To writing this poem…

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

I am standing on ground now. I am no longer drowning, some days I still end up swimming, but I know the shore is there for me always, and people who will help me if I ask.

Thank you #ActuallyAutistic community. I’ll never stop giving back by increasing awareness, research, and driving for better acceptance.

Thank you for making me proud.

Drowning was awful… I am no longer surviving, I am beginning to thrive – I hope I can help others see this too. I still have struggles, meltdowns, have to explain myself endlessly to other people… but I know always… they are there for me.

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:

To the medical professional diagnosing me… Here’s why I am Autistic.

I am currently seeking an official diagnosis, even after seeing a psychiatrist for approximately 6 hours and a psychologist for the same amount of time – only the psychologist called me ‘atypical’ after asking directly if I was Autistic. They then informed me that they had told my mental health nurse the first day they had seen me that they suspected this. They are not under New Zealand guidelines able to do this unless an “authorised” person – so I have to see a consultant psychiatrist in May. I would not pursue an official diagnosis if I did not need it for research purposes. I agree with the Autistic Self-Advocacy Network – self-diagnosis is valid.

TW/CW: Sexual assault

Evidence

Misc

  • I have co-occurring ADHD & OCD [1]
  • I have co-occurring Crohn’s Disease[2]
  • I have co-occurring Dysgraphia and Dyscalculia [3]
  • I was told off for fidgeting constantly (ADHD shared symptom) [4]
  • I was sexually abused due to naivety [5]
  • I struggled through University and had to drop out frequently for “stress” [6]
  • I used to run away as a child [7]
  • I would have stress meltdowns after school [8]
  • I was bullied at school frequently [9]
  • I was disliked by teachers for asking ‘stupid questions’ [10]
  • I suffered acute Autistic Burnout at 36 which nearly cost me my life [11]

Tests

  • I score 144 on the RAADS-R [12]
  • I score like this on the EQSQ test [13]
  • I score this on the Autism Spectrum Quotient Test [14]
  • I score like this on the Self-Reporting Camouflaging Autistic Traits Test CAT-Q [16]
  • I score like this on the Sensory Perception Quotient [17]

I have seven pages of evidence I am going to transcribe here that is not cited… but these are some of the things I believe that are irrefutable proof that I am an Autistic Person. Also the AQ-10 is garbage, as is most of the AQ-50.

Autistic Acceptance Month – Supports and Appreciation

The artist for the above image is @Kayas_Kosmos!

Supports and Appreciation

My whole life has been constantly taping stuff together that seems to work for the myriad of negative traits from ADHD, Autism and OCD to survive.

I don’t have a lot of supports. I have my my wife, my cats, my Mum (who lives a house away and that’s a complicated relationship as with many undiagnosed Autistic children with their parents), and many neurodivergent Twitter friends.

My Wife

The world’s most amazing person. I could never write enough that would do her justice. She’s been incredible from the day we met, our relationship founded on honest, mutual respect, no yelling – making every problem the person and the other person vs the problem, never attributing the problem as the person. We have an honestly rule – when one of us has an issue, we just discuss it openly, no yelling, no fighting. When one of us is feeling down, the other one picks up the slack around the house.

She’s kind, compassionate, passionate, enthusiastic, artistically gifted, extremely caring and patient. I try to show her I love her through actions rather than explicit words a lot of the time, and the first eight years of our relationship were hard for both of us, for varying reasons – mostly always out of our control.

Furry Friends

My cats Phoenix and Coco snuggling on a couch
Phoenix and Coco
Phoenix, Coco, and Nibbler curled up on me
Phoenix, Coco, and Nibbler

In the photo above where they are all on top of me, I am in the middle of acute Autistic Burnout, I had broken my hand from hitting a wall. This was some of the darkest time for me, but they always had my back.

Cats have been important to me my whole life. I’ve been without them for maybe six years total in my life, and they were some of the hardest years. I’ve lost too many to count to old age. We love our animals and protect them. They are the world’s best companions, every one I’ve ever had, I shared a unique bond with. There’s always the sadness of knowing always that they won’t be in my life forever – something I rarely get to not know, stroking them with this knowledge.

My Mum

She’s been there for me however she could – sometimes it wasn’t a good relationship. She’s loved me always, but unfortunately a lot of this road paved with good intentions did lead me straight through hell.

She’s worked tirelessly to ensure that I have stable housing, that I rarely went hungry as an adult trying to survive in an uncompromising world. That I knew I had somewhere to go back to, at times where my life fell apart.

I’ll love her always. She’s always wanted the best, sometimes it’s been the worst, but this is the paradox of raising an Autistic child when you don’t realise they are Autistic. You hurt them in unexpected ways – and you probably never meant to Mum, I know that too.

My Twitter Peer support network

Again this is a largely taped together solution. Depending on the day I might just need to see the Tweets of others going through hard stuff, on some days I need to reach out to a few people and talk.

It’s just a refuge. It’s a place for me to actually work through and process my traumatic life. It’s a place to offer support. I wouldn’t be here without it in all honesty. I am just disappointed it took me so long to find.

Thank you #ActuallyADHD #ActuallyAutistic #ADHDAutism Twitter – I am glad to know you all.

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:

Autistic Acceptance Month – Special Interests

The artist for the above image is @Kayas_Kosmos!

Well… uhh… Mine are extremely varied…

I once read a tweet that I can’t find now that went something like:
ADHD: Interested in all the things!
Autism: I’m very deeply interested in one or two things
ADHD + Autism: I roll 2d6 to see which shiny thing I’m going to be very deeply interested in today

I’ll try and categorize them…

Subject Areas

Mental Health Related

  • Autism/ADHD – And specifically with a focus on ADHD & Autism Co-Occurring.
  • The taxonomy of mental health diagnoses – I want to figure out what actually exists in mental health, currently I disagree with many diagnoses but I do not feel comfortable sharing until I’ve read everything.
  • Pharmacology of Mental Health – The science behind pharmaceutical drug treatment of mental health
  • Indigenous “lived experience” approaches to Mental Health – not white people’s books about the same subject.
  • Taking down bad science w/ an intersectional lens – Hi Simon Baron-Cohen
  • Critical Psychology/Critical Psychiatry – looking into ways that these professions have done extreme harm to people
  • The History of Mental Health – how mental health treatment and experience has changed over history.

Society Related

  • Sociology – the study of society, human social behaviour, patterns of social and relationships, social interaction, and culture that surrounds everyday life.
  • Abolition – I am a strong believer in reforming the ‘Justice’ system – Police/Prisons don’t work.
  • Climate Change – but I can’t anymore due to stress, things are getting worse each day and this can destroy me and put me in emotional meltdown if I spend too much time on it
  • Morality/Ethics – Spend a lot of my time reading Moral Philosophy especially, Stoicism is one area I am far more interested in than others
  • Modern Revolution Practices – how things like Arab Spring, and the Serbian overthrow of their dictator were achieved.
  • Intersectional Feminism – A huge focus area of mine, but I still have a lot to learn as I was a white AMAB child raised in a toxic masculine culture.
  • Cognitive History – this is a relatively little known/new theoretical field – The book The Patterning Instinct is amazing on this.
  • Anthropology – Just interested in all history really, not huge on Wars but so much of history seems to be focused on that. Care more about cultural history – so anthropology it is.
  • Religion – All religions, their texts, and their histories
  • Ethics in Journalism – Critically looking at how news is reported.

Fiction Related

  • Hard Sci-Fi – Science fiction that’s based on science and seems feasible, or at least aims to be realistic.
  • Future Society Sci-Fi – Things that look into a very cool idea around how things will be shaped
  • Moral Sci-Fi – Science fiction with moral themes.
  • Fantasy Fiction – I love well written and unique Fantasy Books, this is my genre of “easy reading”.
  • Personal Account – unique perspectives, and deeply personal fiction.
  • Poetry – It’s my favourite language, because I have to use analogy and metaphor to explain the world.

Practical Hobbies

  • Piano – learning to play at the moment, spend infrequent bursts learning
  • Programming – although not for about two years as I have PTSD from a work environment, I can’t do it because of this.
  • Writing – A lot of my time is spent writing, as well as blogging regularly – I am working on two books at the moment – one is an autobiography, the other a critical look at stigmatization of ADHD & Autism, how science has contributed, and how most things people understand are wrong.
  • Poetry – Something I love writing, but I rarely share – due to having awful experiences when younger.
  • Researching – Spend a lot of my time researching – especially for mental health stuff.
  • Optimizing stuff – be it routines, ways of cleaning, anything I can do to increase efficiency.
  • Technology – related to the last one but specifically innovations that are good for managing my executive function issues.
  • Languages – I am not a polyglot, I know most languages at a basic level, and a lot of European languages are very similar, I am trying to learn more – and I really want to learn te reo Māori as it’s the most relevant in my life.
  • Tweeting – I know people are like this is garbage, but I actually think Tweeting is super important for me – I process a lot of things on Twitter because the 280 character limit is good for making me condense my thoughts on a specific thing, and I can mind wander without realising to see how channels of perception work

TV Shows

  • The Good Place – my favourite TV show due to my moral scrupulosity OCD, it’s messages, and it aligns heavily with my personal beliefs
  • The Wire – my favourite Drama show. An excellent overview of a lot of society and the problems in a dramatic format with amazing characters.
  • Parks and Recreation – How I want to see people who work in public service, I wish people cared this much.
  • Community (Seasons 1-3) – Was an incredible show with a lot of variety, it got really good toward the end of Season 1, unfortunately after firing the show creator in Season 4 it was ok but never really recovered – also losing Troy was pretty bad.
  • Rick and Morty – I love this show, I hate it’s fanbase who do horrible things, but I really like the show.

I don’t really do these all at the same time, I kinda flow in and out of my special interests. There are probably way more than this. I hyperfocus/hyperfixate on stuff at different times depending on the current social or environmental context.

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:

Autistic Acceptance Month – Reactions to “coming out”

The artist for this is @Kayas_Kosmos!

Reactions

Online – Twitter

At this stage I had been well versed in what to expect from the Autistic community online. Most people were incredibly supportive and welcoming. Especially the advocates I had learned from prior to engaging. I felt like I fit in somewhere again, I fit in with the ADHD community but being Autistic gives me challenges that it seems like not a lot of ADHD people have to face. Due to the way the Autistic brain works there’s a number of unique ways that we process information, and this is different to just being an ADHD person.

I did get a small minority of the Autistic community and parents of Autistic children claiming I wasn’t Autistic, but I understand that these people just want to hate their children it seems or have spent so long believing that their way is the correct parenting method that they don’t want to change. The idea they are destroying their children is hard for them to deal with, so they keep doing it.

The others were people who assume that my life has been easy because I am ‘high-functioning’ (a label I don’t think should exist). I have cPTSD from my life. If this sounds easy (which is like a 10th of what I can remember that’s actually just related to specific gaslighting)… ok?

Online – Facebook

*crickets* – I am pretty sure that the algorithm deprioritised me. There were about three interactions – but when I post a profile photo I get like 80. Either people don’t like hearing the truth, the algorithm deprioritized me, or they don’t care – I don’t really care about people on Facebook caring either though.

Neurodivergent real life friends

“Oh cool – I am glad you know you!”

Honestly neurodivergent friends are the best. They just love me, there’s no questioning any of this stuff. They ask questions about stuff they don’t know and I inform them stuff. They know what it’s like to be gaslight – so they try never to do it.

Neurotypical real life friends

[ FILE NOT FOUND ] /half-joking

A few have been great – I haven’t actually talked to that many. Most just kinda ignore me now anyway. Ever since I started getting vocal about stuff in my life.

Family

This is a little more complicated. Not many people understand what being Autistic means, or how important it is for me personally to identify as Autistic. When I told my family the most common reaction was:

“So?” or “Yeah, you had hinted at that”

Cool. If you knew how much this had defined my life, and caused me grief due to not knowing and not being educated CORRECTLY by Autistic people and not SCIENCE which is all wrong. I might have had a pretty decent but still difficult life – it’s important to me that you know how this has ended up shaping everything about me.

I saw this put perfectly in a Tweet:

If you’d understand I lost every argument or not been believed when I said I was struggling where I was telling the truth because I can’t lie well for two reasons – one I don’t like doing it because of my moral scrupulosity OCD (and being Autistic – with a strong moral code that doesn’t allow me to hurt others knowingly), and two that I was always thought of as a liar due to being Autistic in my adult life up until the age of 34… you’d realise why it was important for me you knew. This is just one thing that has caused me grief.

It’s also the thing I love about myself the most.

Workplace

[FILE NOT FOUND]

Official services that can help me

[FILE NOT FOUND]

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:

Autistic Acceptance Month – My diagnosis/discovery story

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: