My Experience Taking Diagnostic Tests as an Autistic Person – AQ-10

This is part of a series on how hard Autistic diagnostic tests are for me from an ethical, situational, and emotional level. Today the AQ-10 – the most widely used diagnostic test in the world for Autism. The first in the series on the RAADS-R test is here.

This test has a number of errors in it. The one linked below has a glaring error in it described here – it should be 6 or more not more than 6. It’s also unreliable according to large scale studies. Basically it’s not a good test for Autism at all – there are advanced versions of this known as the AQ-28 and the AQ-50.

Test Score

I score 5/10 on the AQ-10 – I am not Autistic. Sorry.

The Autism Quotient Test (AQ-10)

Ok there’s one scale here – there’s no option to agree or disagree so you have to make a choice. This is pretty hard – again forced into a binary when neither agree nor disagree could be an option – so I will feel anxiety every time I feel I have ‘lied’ by making a best guess. This is also made more complex by the fact I have moral scrupulosity OCD – I have to be honest.

  1. I often notice small sounds when others do not – ok. What is a small sound? I grew up around my family who were most likely also Autistic, they also hear small sounds. So they are big sounds? Nearly everyone hears the stuff that I do usually they are just are not as aware of it. Are we talking the constant buzz of a refrigerator? Cause that seems like a big sound to me – but others say they can’t hear it but it’s not a small sound… I guess this is true. I will Slightly Agree. [1 point]
  2. I usually concentrate more on the whole picture, rather than the small details – What picture? I know the saying is used in a colloquial format to mean looking at the overall concept but it could also be the whole physical picture. As I said in the RAADS questionnaire this is highly variable for me – sometimes I do want small details, sometimes I do want just a broad overview, sometimes I look at the strokes in a painting, sometimes I do look at the whole painting. Usually? I now am trying to assess every time I have ever concentrated on something – and when was I concentrating and when was I just glancing? Because when I glance I am probably likely to see the whole picture, rather than small details. But sometimes I concentrate on the whole picture. Where’s the option for I don’t know to make an accurate accessment? I am not always detail oriented, and I’ve had a lot of negative reinforcement when I’ve missed details. So I have to Slightly Disagree here. [1 point]
  3. I find it easy to do more than one thing at once – Yes, this is always true. I breathe and type all the time. I do lots of things all at once. My body has a heart beat – I am constantly doing multiple things at a time. Oh multitasking? Is that what they mean? Sometimes I can multitask – depending on what the tasks are. I often listen to music and work. I often walk and talk on the phone at the same time. I fidget while listening. I do have problems when I have to change a routine to task switch but if task switching was part of the routine it’s not as difficult. I assume they want me to say no – I guess I’ll theory of mind what they thought I should answer even though I can’t do that apparently. I’ll say Slightly Disagree. [1 point]
  4. I find it easy to ‘read between the lines’ when someone is talking to me – which someone ? Cause I have a dictionary of how to interact with different people depending on the social context – my proximity to knowing them does influence how much I understand of their communication style – and given the propensity for people to constantly misunderstand either other – Neurotypical people often talk longer than they want to. I’d say that everyone is terrible at reading between the lines. So do I do this as much? Maybe – sometimes people attribute my passion as anger when I talk about systems – but that’s never the context. So they understand me less – this is known as the double empathy problem. I will infer then they mean I am ‘stupid’ can cannot understand social context – I don’t want to lie though so I will Slightly Agree. [0 points]
  5. If there is an interruption, I can switch back to what I was doing very quickly – ok I know the answer to this one easily – the first question I can answer simply – Definitely disagree. [1 point]
  6. I know how to tell if someone listening to me is getting bored – yes. I do know this – a lifetime of people being bored with me has made me hypervigilant to when they are losing interest. Unlike with other Autistic people or ADHD people who often will not be as obvious at ‘listening’ due to neurotypical people’s frequency to not be able to ever hide their emotions outwardly it’s pretty easy to tell when they are bored with me – it’s never usually subtle. I will Definitely Agree. [0 points]
  7. When I’m reading a story I find it difficult to work out the characters’ intentions – uhhh… how many books do you want me to go through? Some authors clearly mask the intentions of a character only to do a plot-twist(?) this is a really common technique in story telling meant to make the reader surprised – other times authors think they are being crafty with their subtext that screams out from the page – it really depends on the book. I have read a lot of books, and now I am trying to recall whether or not I find it difficult always, or just times where the author has deliberately not given away any motivations because they need the plot twist to catch the reader unaware. I guess I Slightly Disagree. But again – not confident here. [0 points]
  8. I like to collect information about categories of things (e.g. types of car, types of bird, types of train, types of plant etc) – umm… collect information? In a binder? On a computer? In my mind? What are we talking about here – I do like to collect information about my areas of interest. But I remember page numbers from traumatic books I have read that affected me deeply due to hyper empathy. I didn’t like collecting that information – I did it, but often it was not a conscious choice. I also collect a lot of information about categories of political figures – so dictators has a category here – I didn’t particularly like collecting this information either. I do like collecting information in my mind mainly about stuff I do like but it’s not always a conscious choice when or how I do this. It just happens. I think about my cognitive capacity for memory a lot because I don’t have much in the way of working memory and I often don’t realise when I am codifying information. My categories are also abstract in nature – I relate things to other things that are not obvious in my own categories. I guess… I do ? Maybe? Slightly Agree. [1 point]
  9. I find it easy to work out what someone is thinking or feeling just by looking at their face. Two logic conditions here this means that it will return true if either one of them is correct. I have studied body language, and facial stuff my whole life – I have a great catalogue of different emotions – I can’t always tell what people are thinking by looking at their face – because I don’t believe anyone can – I have seen so many psychics get it wrong looking at people’s faces – I don’t think anyone can reliably mind read, or there would be way less misunderstandings in the world. That condition is definitely false for me. But the feeling one is true, unless I am tired, or drained and I need my social batteries to recharge. FALSE or TRUE == TRUE I think I Definitely Agree [0 points]
  10. I find it difficult to work out people’s intentions – now or in the past. Because now I know a ton of information about how people are always lying to each other because it seems to happen all the time, and they can apparently mind read all the time, and they think of me as a liar because I fidget and have issues with eye contact – I am pretty awesome at working out people’s intentions, and am I an observer or am I someone who is involved, because my capacity to understand people from the outside is much better than when I am involved due to the constant pressure of masking and also not wanting to hurt people and controlling tone – so I need to focus resources on that. But if I am observing people this is not a deficit. I will choose Slightly Disagree. [0 points]

This test is garbage… absolute garbage. It’s based on people overestimating their abilities, and underestimating ours. It’s filled with ableism – it’s unreliable. It’s the most common screening test for Autism – and people have not been diagnosed because of it. I would not have been. I still don’t know if my answers are accurate enough because there’s a lot of undefined things in this test.

Autistic Acceptance Month – Everyone should know…

The artist for the above image is @Kayas_Kosmos.

Today’s theme was everyone should know – and white supremacy is something all people should know about – Black people already know this because Black people deal with it everyday without choice. No matter their age – it’s never too young to talk about this to your children if you are white. The earlier the better.

There’s already an underlying whiteness problem in the fact that this topic was chosen when the theme was Everyone should know. There was no prompt on this and there should have been. Maybe political issue… but it’s not just politics. It’s everything.

Black Autistic experience is a crisis issue

@iwritecoolstuff has covered this and more on their blog – they are one of my biggest educators – we need to listen. You should follow them as the bare minimum to start – and read their blog on Blackness X Autistic.

This is a message for white people who do not fight to become Anti-Racist – we need to fight to change the system.

White people talk about race issues to try and communicate but there are far better lived experience voices we should listen to who are not white – and not just voices that make us feel comfortable. We need to engage with this everyday, because Black people have no choice.

While not the same as the US – we have the exact same problems here with our Indigenous Māori and other Pasifika people who deal with all these issues in exactly the same way, and Black people in New Zealand face these exact same issues too. White supremacy surrounds us, and none of us are immune from it.

We need to challenge our views here – we will never experience systemic racism, or racism of any form – because it’s about power differentials. It’s impossible to truly empathize with something we have no understanding of – but we can listen to Black voices and work on abolishing the structures that cause harm and uphold white supremacy everyday.

The police, prisons, mental institutions, seclusions in education systems, the justice system in all parts, and society in general – these all cause harm, and there’s more that is not comprehensively covered. These things are used as tools of social control against minority groups in society.

Psychiatry and psychology are used as tools of social control – the diagnostic criteria are weapons of white supremacy – as addressed in the blog mentioned above (have you read it yet?).

We need to give money to Black people and organizations where we can, and pass up roles for speaking where others might be more appropriate – the #mutualaid hashtag on Twitter has many opportunities to do this. We have to start making meaningful change on these issues – it won’t happen without us – we need to centre their voices.

We need to not react to being called a racist when we have been – we are tainted by white supremacy – it’s a product of our environment and we can’t just “not see race”, we must see race. We need to be accountable. We need to be accountable when we do this wrong also.

Black Autistics are being incarcerated, institutionalised, or killed by police.

That’s just touching the surface – all Autistic people must mask – but Black or minority ethnic Autistics have to deal with having to perform a white standard of what a person should be – their culture and identity is denied. The Black Autistic experience is denied and almost everything in Autistic research is still overwhelmingly white, and exclusionary by design. Even online spaces some of us enjoy are not safe, or our experiences of being Autistic universal.

If Black people slip or meltdown in public – that can be life threatening. So the pressure is so much more intense. The mask never can come off in public… not even once without severe risk. Letting it slip slightly even in school can lead to a lifetime of systemic abuse.

There are some great books you can buy to educate yourselves – buy these from Black owned bookstores as the first step – a list is here for those in the US, but find local ones where possible and give them our money – support Black businesses.

Some great books that have been suggested by @iwritecoolstuff to get some understanding of what it means to be Black and also deal with intersectional issues are:

‘The Bluest Eye’ – by Toni Morrison
‘Going To Meet the Man’ by James T. Baldwin

There are also some great books on Intersectional feminism and Anti-Racism:

‘Hood Feminism’ by Mikki Kendall
‘How to Be Anti-Racist’ by Ibram X. Kendi

There is also a suggested Anti-Racism reading list by Ibram X. Kendi with further reading here.

Please engage – centre Black voices. Listen. Fund. Abolish. Campaign. Support – don’t try and lead.

If you got to the end of this blog without reading the blog suggested. Ask yourself why that might be.

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:

My Experience Taking Diagnostic Tests as an Autistic Person – RAADS-R First

This is going to be a series on how hard Autistic diagnostic tests are for me from an ethical, situational, and emotional level. I will start with the RAADS-R test.

I am analytical by nature. I don’t think I am over analytical, I think people who don’t consider as many options as me to be less analytical but not deficient. It’s just a difference in how I process information.

Test Score

  • I score 144 on the RAADS-R [1]

The Ritvo Autism Asperger Diagnostic Scale-Revised (RAADS-R) – First 10 questions…

Lets have a bit of a dive through about why this test sucks as for me as an Autistic person. First of all it’s got a different scale based on whether you are male or female. RIP that’s bad science so we are already off to a bad start.

Secondly the options are:

  • True now and when I was young
  • True only now
  • True only when I was younger than 16
  • Never true

We have binary possibilities straight off – but also with weird added context of before I was 16. I don’t know in my mind when I was 16, like I know I was 16 at some point but I have time agnosia (inability to measure time). This makes it hard for me to distinguish exactly when I was 16.

I want to answer as honestly as possible always, and they are making me take educated guesses.

  1. I am a sympathetic person. Ok yes easy: True now and when I was young
  2. I often use words and phrases from movies and television in conversations. Ok second question and I already can’t answer this easily – everyone does this – I don’t know a single person who doesn’t do this in my life. But how often is often – what is the frequency here, I know I did it more as a child than I did as an adult. These days I might also use a lot of phrases from movie and TV without knowing. Also I haven’t seen every movie or TV show, so it’s entirely likely that some of my sentences or phrases are from movies I haven’t seen. I will take a guess here and say: True now and when I was young – but I don’t feel good about it or know if it’s accurate.
  3. I am often surprised when others tell me I have been rude. Wait people don’t get surprised when they have been accused of rudeness? I would have thought that shock to a negative statement would be the default reaction. Oh wait you mean people are intentionally rude? That seems pretty hostile. I am always surprised when people think I have been rude – because I never mean to be – so I guess this is True now and when I was young.
  4. Sometimes I talk too loudly or too softly and I am not aware of it. Again… I am usually aware of it. Other people just seem to have a problem with it or attribute it to having to have a consistent tone – I am usually modulating my voice based on the amount of environmental noise around me, the social context of talking, and how flat I am currently feeling – I am usually always aware of it. Oh… sometimes? How often is sometimes again? Like does that mean some of the time or sometimes? Like specific situations? I guess sometimes but not some of the time it is true, and I’ve definitely not been aware of it as a kid but I am aware of it now. Other people are not aware why I do it but I guess that’s my fault. So I will choose True now and when I was young.
  5. I often don’t know how to react in social situations. Uhh… maybe? Often again… OFTEN? WHAT FREQUENCY IS OFTEN? My anxiety is getting bad cause they keep talking like this is an obvious concept – but frequency of occurrence is always relative. I didn’t when I was a child, but I still have some situations where I get this wrong because people have decided not to be explicit about how I talk. So now I get this right more frequently than I get it wrong… but I still might be often – I don’t know how often that is… I feel like the answer is True only when I was younger than 16 (with this context).
  6.  I can “put myself in other people’s shoes”. I mean I don’t like borrowing shoes. I know what this phrase means but this is a needlessly ambiguous question that relies on understanding of a specific thing. What they really are asking here is “are you empathetic?” but they have cloaked it in a weird context specific and language specific understanding to mask it’s true intent. Just ask what you mean. “You are being too literal”. Literally fuck off. (I mean that figuratively of course). So… what? When did I learn to do this? I think about the age of 8 I have a memory of teasing a girl and she made me realise that I needed to think about circumstances outside my own. So It was True only when I was younger than 16 – but according to any moral development stuff I have seen – this is applicable to all people – no one is born with the capacity for empathy – the neuroplasticity of the brain in younger childhood allows this capacity and for some it doesn’t develop until far later in life than others..
  7.  I have a hard time figuring out what some phrases mean, like “You are the apple of my eye”. No I really don’t, and everyone wouldn’t understand what this means without an explanation – if I saw it in a book with specific context when two characters were talking to each other about affection for one another – it would be obvious. I use metaphor to translate. If someone just busted this out without context when I first learned it and I was taught not to ask questions young so I’d probably be confused about it. But that was through active discouragement of inquisition about things in the world. People got sick of me asking why. So I stopped doing it. Also some phrases ? What do they mean here by some? Does everyone else always know the specific context of a phrase in a non-contextual situation? Am I just more honest about not knowing stuff… It reminds me of Ron Burgandy using the phrase “When in Rome” wrong because he interpreted the context wrong. So… how do I answer? I have to assume they want me to be “stupid” here because that’s the context. But I think for me it is Never true.
  8. I only like to talk to people who share my special interests. Ok this is a loaded as hell statement. Sometimes I don’t know what my special interests are, it assumes that I must have fixed specific interests. I often didn’t know I was interested in a lot of subjects until I heard of them for the first time. So how can I know? I do like talking about my special interests…. I don’t like small talk but I like other people who are passionate about special interests talking about theirs… and again – was this true only now if they want me to answer yes – I can’t actually remember a huge amount of details about my conversations from when I was a child. So… another wild guess based on massively incomplete data and bad assumptions about me as a person. I am going to say True only when I was younger than 16 but I have massive anxiety over this response.
  9. I focus on details rather than the overall idea. Again… what idea? And what specificity are we wanting? They always assume that everything is one or the other. But often it’s very context specific depending on what sort of information people want. You can look at my answers here and infer that I over complicate stuff and focus on details, but that’s because they are trying to make me make a self-assessment and I want to be as accurate as possible. I guess this is always true, but I often miss a lot of details, and sometimes I only want a broad understanding of a topic… so it’s neither true nor false. So what do I choose? True now and when I was young.
  10. I always notice how food feels in my mouth. This is more important than how it tastes. Two logic conditions that are not always true here – I do always notice how food feels in my mouth, but it’s not always more important than it tastes – I eat some things that the texture isn’t that great but taste good. So the logic processing for this statement is TRUE & FALSE == FALSE. Never true.

Can you see the issue here? This is so frustrating for me personally as an Autistic person. I am not sure if other people relate but we desperately need some tests designed with specificity taken into consideration. Because they rely on a whole subset of data that is ambiguous to anyone with my logic processing, and my situational understanding. That’s 10 questions and I am mentally fatigued from trying to work out what they want to actually ask. There’s 80 questions in this test. 😫😢

Autistic Acceptance Month – Routine

The artist for the above image is @Kayas_Kosmos.

Autistic categorization and paradox criteria from having ADHD triggered.

What is a routine?

Ok so I live in routines – everything is a routine. EVERY SINGLE THING. When I learned programming I was like oh cool now I understand how to define the things I do – functions.

But I also have chaos brain from ADHD just hanging out going “lets buy a camel” every now and then. Chaos brain keeps throwing tiny pieces of metal into the cogs.

What do you mean everything is a routine?

I need a drink… I run the routine…

if(GoGetADrink())
	cool
else
	randomlyResumeTask
		

bool GoGetADrink
{
	ForgottenTask = StartCoroutine(GetForgettingStatus) => 
	{
		wait 100ms;
		return GetRandomNumber(100) == 42
	}	
	while((hasDrink || ForgottenTask) == false)
	{
		if(CheckPantsForNeededRandomItems() == true)
		{
			switch(CheckLocation())
				case upStairs:
					GoDownstairs()
					if(ForgottenTask)
						break
				case downStairs:
					GoToKitchen()
					if(ForgottenTask)
						break
				case kitchen:
					if(ForgottenTask)
						break
					OpenFridge()
					if(ForgottenTask)
						break
					GetDrink()
					if(ForgottenTask)
						break
					return true

		}
		else
                {
	            return false
                }
	}
        return false
}	

I need constant structure – every thing is based on programming – programming makes sense to me because I see things in order. I have a constant random function running in my head that is just chaos brain who wants me to look at potato salad recipes for 40 minutes without potatoes or something… just some completely useless but amazing thing to know.

I have more routine than this – and breaking a routine often causes a system fault which can shut down my system. I hope this analogy works for some people. If you can’t read my psuedocode – I don’t know how to translate atm. I am not in a good writing routine currently. I have another blog on my mind lol.

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 – Family

The artist for the above image is @Kayas_Kosmos.

I wish I could say I had a good childhood, or life, or that family was there for me always but they weren’t. Wishing won’t achieve anything. The cycle of lack of understanding in my family of their own neurodivergence prevented me from understanding mine. I get to make peace with one of my parents, but my Dad died before I could tell him what I know now. 37 years into my life.

I want to write a letter to him – this is the only closure I get.

Dear Dad,

I love you.

I miss you.

I’m proud of you too like you always were of me.

You knew I needed someone in my corner, even though you moved away. You never wanted to do that either, but life made fools of us all. It took from us of the happiness we deserved. The understanding I have now is that I am the first to know who I am in the modern era, for I’m sure we’d have been fine before. When we had a village to raise us.

You loved me when I was failing at school, you loved me when I got caught inhaling solvents by Mum, you only cared about me. You had an understanding of what my life was like, because it was your life too. You stilled your rage toward me, you’d apologise whenever you hurt me. You knew I had feelings too.

The decades may have changed, the people around us might have started to look different to us, but you weren’t a bad person. You did things you weren’t proud of and because of that I was not proud of you too. You stopped surrounding yourself with better people, and you became a far worse man.

I can’t change what happened toward the end but I’ll remember you for who you were before the world crushed your spirit, before you did the things you did to escape. You taught me a lot of good things that have served me well.

You campaigned for gay rights because you had a gay friend – you knew this was the right thing to do. You protested the Springbok tour because you knew apartheid was wrong. You taught me to care for those who have been shut out. You taught me not to trust authority, because obedience without questioning is the wrong way to live. You are with me every time I protest.

You taught me to love poetry because you loved it too. You are with me whenever I read it, whenever I write it.

You taught me to see music in a way I will always remember. I grew up as a kid raised on Queen, David Bowie, Pink Floyd, Led Zeppelin. You gave me the gift of music, you made realise the beauty of the words not just the melodies. You are with me every time I discover an artist who was trying to tell us something we needed to hear.

You taught me to befriend animals, your gift is my gift too. I can see them in the way you could. I could feel their feelings like you could too. You knew all your animals loved you unconditionally because you did too. I am a whisperer also, I love you for this.

You were an actor when young too, you encouraged that in me. The real world made me doubt my choices, but the theatre gave me skills I needed to survive. The love of prose and metaphor and storytelling weaves its way through my world too. I think of you now as I perform to go outside.

There’s some things I never told you that I need you to know.

I’m bisexual, I don’t just love women and men, I love anyone who loves me too. I’m not actually a man, it’s not something I can ever be. I’m non-binary. I know you’d have accepted me now. I don’t know why I took so long or was so scared to tell you. You never would have abandoned me by choice.

I have a wife who you didn’t really get to know, but the brief time you did you could see she was right for me, and she is, you knew this too.

I spent so long mad at you for your flaws, that I couldn’t see your strengths. I did the thing the world did to me to you. I hated you for shining a mirror on myself. But I needed to see this to truly understand myself. It just came before I could tell you.

You kept me alive as a child, and a teen. It was only as an adult that I was taught to focus on your flaws, and the lack of understanding between us, stole from us of so many things.

I’m neurodivergent Dad, and I think you were too. I’m an Autistic and ADHD person, and you were too. You were the cautionary tale of what I could be if I had not known this. My life has sucked, but I see the beauty now Dad. I don’t want to die anymore, and you allowed me to live.

I Wish You Were Here.

Your child,

Rory.

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’ Autism-Charity

The artist for the above image is @Kayas_Kosmos!

These are the important ones I can think of to support as a priority.

‘Favorite’ Autism Charities

The Autistic People of Color Fund – Fund for Community Reparations for Autistic People of Color’s Interdependence, Survival, and Empowerment

Logo is teal with white text that says "Fund for Community Reparations for Autistic People of Color's Interdependence, Survival, and Empowerment." Background shows five fists thrust in the air in resistance and solidarity.

Autistic Women & Nonbinary Network (AWN) – The mission of Autistic Women & Nonbinary Network (AWN) is to provide community, support, and resources for Autistic women, girls, transfeminine and transmasculine nonbinary people, trans people of all genders, Two Spirit people, and all others of marginalized genders.


NeuroClastic – Our primary purpose is to document the autistic experience through the lens and work of autistic individuals. 



Autistic Self Advocacy Network (ASAN) – The Autistic Self Advocacy Network seeks to advance the principles of the disability rights movement with regard to autism. ASAN believes that the goal of autism advocacy should be a world in which autistic people enjoy equal access, rights, and opportunities.


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:

I am ‘unreasonable’

TW / CW // MENTAL ‘UNSTABLE’ POSTING // SWEARING // SUICIDAL IDEATION

I cant help it.

I don’t want to be like this.

I really don’t want to be like this.

I woke up in a bad mood this morning, my sleep was terrible.

I was asked to go help my wife with the rubbish – that’s fine I hadn’t planned it – FORK used.

On the way to the tip – my wife notices it’s Sunday and the market in our town is on. I know she needs to look at plants and stuff for her business – I agree it’s fine – FORK used

I get home from the market and I am trying to do a Tweet on my phone but I have to close the gate to our property – that’s fine I had lost track of time – FORK used.

My Mum’s car is parked outside our place – it’s messy from moving the lounge around – my wife says she’s probably here to pick up a table – that’s fine – FORK used

After finishing the food we had got at the market my wife starts trying to move the table by herself – it scrapes along the floor in a tone range I hate – I have to control my rage – I get shitty and and help her with it – I end up carrying a massive table by myself – I think this is how I deal with rage – I hurt myself – FORK used

My Mum starts going on about how it has new scratches even though it’s been dragged on a thick cloth – she says it’s a new table – I disagree – I get told off for banging it as we try to get it – FORK used.

I can sense the anger and disappointment in my family – not at me just with everything and I have to take it on due to hyper empathy I don’t get a choice, I am good at controlling it but I haven’t had much sleep so I just have to bear it and cannot block it out – FORKS used

The table we moved has a lot of dust under it – I notice this instantly – I know I’m going to be judged for it because I am always judged for it – I start to vacuum – I don’t have headphones on because I am irrationally angry at this point – I think I am a psychopath again. – FORK used

I realise all the dust on stuff around the skirting boards, I notice everything is dirty – I start cleaning and dusting everything angrily – I have cleaning agent on my hands burning my skin – I am scrubbing everything – I want to hurt myself and I want everything to be spotless – I want not to be judged for this. A chair is scraped across the floor – FORK used. I put my headphones on.

I check twitter quickly to see someone has made a comment about no two Autistic People or ADHD people being the same in a quote tweet of mine about some trauma (they were relating). I know this – they didn’t mean to trigger this but people always assume I am generalising when I am not – that’s fine – FORK used.

I go back to cleaning like a maniac I know I am melting down at this point but there’s nothing I can do my family tries to talk to me – I tell them to leave me alone and just to let me do this – they seem worried – I take on their worry – I keep cleaning – I can’t stop seeing how I am going to fail the cloth I am using to dust keeps leaving small specs on everything I dust – they are magnified to me – EVERY JOB is a MICROFAILURE – You will never be good my mind tells me – nothing will ever be good enough.

I want to scream – I keep cleaning – I am destructing but at least if I can channel my uncontrollable emotion into cleaning I won’t hurt anyone. I go to clean behind a door and my Mum has jammed two stoppers where I cannot see them – because I don’t know they are there I can’t figure out why the door won’t close – I start getting mad and wanting to smash things when I see the stoppers – I understand but I am still angry – FORK used.

I have been vacuuming really intensely – wiping skirting boards – dusting everything I can see that is dirty – it’s chaotic it seems unordered to anyone – but the urgency with which I have to clean the items I see is a deprioritised queue – I have to do whatever my brain hates the most at this moment – I get halfway up the stairs and my vacuum cleaner which is portable has the battery die. – FORK used.

I knew the only way I can calm down from this is to write it all out – so I have now – I am rage, I am sadness and hatred of myself – I don’t want to be like this I want to break down and cry but my family will be concerned so I have to hold this in otherwise their concern is internalised due to hyper empathy.

I AM SHAKING I WANT TO DIE AND I KNOW I DESERVE TO LIVE. I KNOW I CAN HELP BUT I KNOW I AM CAPABLE OF HURTING PEOPLE WHEN I DONT WANT TO. EVERYDAY I HAVE TO BALANCE THIS – ALWAYS – A CONSTANT FUCKING NIGHTMARE OF TREADING A LINE BETWEEN RAGE, SADNESS, SUICIDE AND LOVE, COMPASSION, AND FRIENDSHIP.

DON’T EVER MAKE ME OUT LIKE I AM HIGH FUNCTIONING. I HAVE LEARNED TO MASTER THE RAGE I FEEL ALL THE TIME. ALL THE MEMORIES I HAVE OF EVERYONE IN MY LIFE LETTING ME DOWN. EVERYONE BLAMING ME FOR THINGS OR THINKING I HAD ULTERIOR MOTIVES DUE TO YOUR LACK OF THEORY OF MIND. YOUR ATTRIBUTION BIAS. I FORGAVE WHY THE FUCK WASNT I ALLOWED THAT TOO.

I DIDNT GET TO SEE PROPERLY FOR A FUCKING LONG TIME POSSIBLY FOURTEEN YEARS AND I CANT BE ANGRY ABOUT IT BECAUSE THERES NOTHING THAT WILL CHANGE THAT FUCKING FACT. AND I STILL AM ANGRY BUT I DONT WANT TO HURT ANYONE BECAUSE THAT WILL MAKE ME FEEL WORSE. I HAVE TO FORGIVE. ALWAYS.

YOU FUCKING MADE ME LIKE THIS.

I CANT EVEN EXPRESS MYSELF WITHOUT TEXT BECAUSE IT SCARES PEOPLE.

EVERY DAY I GET THE POSSIBILITY OF LIVING BACK IN HELL THAT IS BURNOUT.

Autistic Acceptance Month – Stims

The artist for the above image is @Kayas_Kosmos!

Stims

I don’t have many tangible stims, or stim ‘toys’ (I prefer accessibility aids). I do a lot of stimming but I don’t have anything at the moment.

  • I tap each of my fingers to my thumb
  • I bite my nails
  • I play with my beard
  • I play with ribbon pieces randomly
  • I rotate my wedding ring
  • I suck the insides of my cheeks
  • I chew on the edges of mon tongue
  • I put pressure from my tongue on the top of my mouth
  • I grind my teeth
  • I type a lot – I think this is stimming for me
  • I pet my cats
  • To be honest most of the time I just shake subtlety by bouncing my knee.

I need to get something at some point – I need something to chew, but I just can’t afford anything right now. So I will keep using the ones that give me ulcers and aren’t actually that bad.

I never really stim in public. People look at me strangely – I don’t like feeling like an alien if I can avoid it so I just bottle up the stress – there’s always the ability to meltdown at home. Just have to keep it in, with a smile.

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:

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"