I have found an old book of poetry I wrote… It’s been interesting reading. I’m going to share some of this stuff. I was seventeen or eighteen here I think.
I have been thinking about why poetry appeals so much, and I realised it’s my native language. I have to use analogies to explain anything in life. The language of metaphor and simile appeal to me due to this. I also don’t care about rules generally when I write.
betrayed by a so-called friend they’re all the same in the end their lies and deceitful words lead you into their evil game
wish i could be just like you you have it all compared to me i wish i could be happy i just wish i could be happy
end it! throw it all away can’t stand the pain it’s catching up just end it
who am i really? i don’t know who i am confused and sick of double-dealing a life that’s not all laughter just one that’s filled with pain
so pure and sweet but yet so hard to reach to live, to die is life all so plastic?
dreams are shattered as the dawn breaks and we face reality of another day
is life ever sweet? or do we have to suffer in a world where pain knocks at your door
This one has a note: “Just a normal day!”
there is no normal just a stereotype in this world where all are different
Yes a second poem called love – I have never been great at titles – guessing I was reading Shakespeare in English at this point.
to be in love hath thou ever dreamed to taste this fruit so pleasant and sweet
a life worth living is a life in love and life’s purpose is to find the one
thou does not know the relief i feel to find this one who hath been made real
field of angels
she whispers in your ear to pursue a dream so far and you want to run because hope has set you free and you feel like you are on top of the world and you will never fall because the words she spoke you heard in a story in a dream you found the missing piece to the puzzle of life and you placed it in finding a field of angels and that’s where you got your strength that’s where you got your prosperity in the sacred field where you are now safe and calm
a tear running down your cheek means so much to my heart it’s like jagged spears fired at my soul with every tear i die oh my love do not ever cry i will try to make it better for you somehow, someday, some other way i’ll always be there for you when you’re feeling down in life and you need someone who cares lean on my shoulder let me kiss your cheek i will make a promise even a false promise that it will be alright i would do anything to stop that tear right there so wipe it off just hold my hand you’ll see the love i hold for you
i tell myself i have no feelings for you i pretend you’re just my friend but looking into your eyes, i notice more than i should, i see you’re the only one i can love like this you are all of my pain, all of my joy within you is everything i have ever needed and beyond so much i desire to hold you you are the one who holds my glass heart you are the only one who makes me human you make me who i am i tell myself that it’s wrong i try to hide it but it always comes out in tears forever and always lasts my love for you beyond space, beyond time i always have and eternally will i love you
Yes, that’s correct I have no idea who this was about. Sorry also to my wife, this was clearly a distortion of the truth – I clearly could love someone like whoever this woman happened to be.
i observe you like i look at the stars you have a burning passion yet a shining innocence you are so close to me but really far away it was at any given moment when i would truly see what true love is and now i found it not in looks or in personality but in depth and such a mystery you portray a shadowbox i can only see through a small hole and that one glance at your life withers any flower strong enough to face the raging storm i look at you like a star you are not close but not that far
There’s a single line written after this
i am but a drop in the great ocean of love
True story I gave this poem to a girl I met clubbing. It didn’t go well. She let me down easy at least. But thinking back to it is very cringeworthy – I always tried massive romantic gestures because that’s what media had taught me. Sorry if you are reading this Kim.
she is the image of beauty she is the image of love and in what seems like tomorrow she will be gone
i will wake in the morning to find her not there the one i loved will be gone forever
if i were to tell her my feelings would she understand? this girl i’ve sworn my love to will she not feel the same?
o what woe and despair to fall in love in the final minute of an only tragic ending for tomorrow she is gone
My rules for social media (you can adapt your own always) – These I apply in real life too:
Model the behavior you want – You can’t expect people to act in a way you don’t act. (Remember you don’t have to be perfect, but you should always aim to be your best).
Connect with people with diverse backgrounds, but not outside core values. You also need to know what your core values are – I have five core values I live by – Ako,Ethics, Empathy, Inclusion, Versatility. This exercise can help you work these out: Core Values Exercise
You can generally trust people with pronouns in bio – You can also always discount people who say “pronouns in bio” as an insult. People who think that respect is something they have authority over aren’t people you should respect.
Don’t take criticism from people you wouldn’t go to for advice – This takes a long time to learn, it’s vital though if someone is trolling you or is acting in bad faith towards you – their criticism has no value, discard it. Just practice doing this. It gets easier.
Refute trolls then block – Learned this thanks to the trans community – if you leave a comment without refutation people might think you share these views. Refute obviously wrong stuff, then block them.
Block liberally (don’t mute) – All muting does is allows people to abuse you or others in your comments rather than actually doing anything productive, you don’t know what harm they are causing without your knowledge.
Believe victims – There’s a >95% chance they are not lying. If it’s someone you looked up to – challenge why you think that’s as important as acknowledging the harm they may have caused.
Stop using ableist phrases – Ableism is hurtful, and a lot of the time you won’t realise you are doing it – TRY TO FOLLOW THESE RECOMMENDATIONS – you’ll make mistakes, you get better at not making mistakes with time.
Be prepared for misunderstandings – quite often people read more than they realise into what other people are saying. I generalise a lot – it’s a problem but I will always clarify if someone corrects me on this.
Always imagine everyone has Rejection Sensitive Dysphoria – it’s far better to preemptively say “I didn’t mean this to come across as mean/nasty/hurtful” than to leave it.
Always add alt-text (Twitter, Facebook) – Describe images in a following Tweet/or comment if you do forget.
Check people’s likes/comments rather than their own feed when assessing. People show who they are more in likes and replies than they do on their “front page”
Generally don’t use Facebook except for specific things – I use it for a couple of support groups, and to connect with friends/family not on other social media – but nothing else. It’s engineered to make you feel bad.
Try and learn all about people with less privilege than you – It’s ok to follow people you look up to, but getting obsessed with material wealth is an unhealthy pursuit that will always make you unhappy, showing empathy and trying to make the lives of those without as many resources better by understanding and helping them is far more life fulfilling.
Value lived experience – Lived experience is the most useful tool for challenging assumptions you have. If people speak of their experiences – those count as much if not more than any statistical data you may find – Do people lie? Yes. But nowhere near as much as you would like to think.
Listen – Spend more time reading and understanding rather than talking and judging. If I had fixed ideas on things I had believed due to media/science – I never would have been diagnosed with Autism – I might not be here.
Retweet/share minority group concerns that you are not a part of without quote tweeting/or commenting – This one is just part of being a good ally – They need your amplification, share their experience without needing to add commentary. If you think it will be more impactful if you do make comment that’s ok.
Practice radical empathy – This is one of the best ways to start feeling better about the world generally. If you are actively trying to fix it, you know that you’ve done your part. This helped me forgive so many people in my life by learning to look through their eyes.
Be prepared to be wrong always – Going into an argument headstrong that you are always correct doesn’t allow for growth. It stunts it, any piece of knowledge you have should be up for debate – science has been developing for centuries – it’s been wrong a lot. Be like science – be prepared to be wrong.
Research first – on stuff people say you might disagree with rather than asking them. (Don’t make minorities constantly do things you can do yourself.)
Don’t attack people, attack their views – Saying someone is a garbage human who has erred, doesn’t help change their mind – it isolates them. Shame isn’t a great motivator.
People who have been harmed by others are allowed to react however they want – As a general rule you don’t get to police the tone of people who experience harm, this is extremely true of minorities that have experienced harm.
Try not to use GIFs of cultures where the context could be deemed offensive – This is optional but I try not to use non-white people GIFs as a white person. There’s enough out there.
Share people’s requests for help – (if they specifically request shares etc). If they scam that’s on them, not on you. (I’d rather be a duped fool than a sad cynic.)
Don’t get into arguments generally – If they seem like they are having a bad day or it’s something you don’t need to do. Arguments on social media with people you do not know personally are generally pointless. If you can’t get your nuanced point across in 280 characters or less on Twitter, just usually let it go.
I still get this wrong.There’s no set rules that you have to follow – you make up your own.
You’ll make errors but social media is so much better for me understanding the rules of engagement – and defining the things that I want.
I don’t get hung up on time I spend – as long as it’s time well spent. If social media is like this – it’s an educational tool, resource, and contributes to knowledge. I share funny stuff, cute stuff, I learn more, I empathize, I filter, I enjoy!
Most Autistic people who have been through this don’t like talking about it. Anyone who has ever been through it can’t really explain what it is at the time. I wasn’t diagnosed. I didn’t know I had Autism. I didn’t know what this was, I didn’t have an explanation. It’s been pretty vital for helping me understand what happened to me last year.
What is Autistic Burnout?
It’s also known sometimes as “Autistic regression” – this is hated by most of the Autistic community. It’s a recently discovered phenomenon that has emerged since Autistic people started self-advocating. It’s been discussed on social media a lot. All of us who have gone through it know how utterly life altering it can be.
The most terrifying time in my life for my mental health
Thinking about this is hard. Talking about it is hard. I need people to know what the costs of masking autistic behaviour can be, and how not being diagnosed and constantly masking/conforming to a society not fit for you can feel. It’s not an exaggeration to say this nearly killed me.
Things were not right with me. I was tuning out of conversations a lot more, I was dissociating a lot more. I was growing distant from my family. I had started cycles of rumination. My hyper empathy (I feel other’s discomfort on a level that causes me physical pain) which is sometimes controllable, or at least manageable was not.
I had to drop out of university due to it. I had to fight university to do this again. The cracks in my mental health started tearing open.
Something I am almost never like emerged – aggression
Can I be aggressive? Yes. If backed into an absolute corner, I will lash out but it’s an absolute last resort for me – usually with words. NEVER with physical violence.
I started hating myself on a core level. I just didn’t understand why I was so bad at life – I had ADHD but that couldn’t explain all the social difficulties I constantly have, or my inability to deal with change, or my meltdowns when I fail at schedules I have kept for weeks – I was broken. Tiny routine changes would cause full on self destruction and anxiety.
This manifested in aggression toward myself. (I’d never harm my wife, or anyone else intentionally and I only really hurt her by my need to hurt myself – never physically, never with words if I can avoid it – our relationship is built on mutual kindness, empathy and trust).
I was harming myself here. I started punching myself in the head a lot. I started cutting myself on my arms with whatever I could find. I would spiral and then need to release through physical pain.
I’d have meltdowns frequently, like nearly every day. Not finding something would cause a panic attack if not found in two minutes. After a meltdown I would often not talk. Sometimes just stand somewhere staring at a wall. My mind constantly racing.
The violence toward myself kept escalating. I couldn’t control the rage I felt so I punched a wall and broke a bone in my hand. I lied about this in shame. Which doing makes me hate myself more, but I was in defense mode.
Suicide ideation and attempt
I thought I was losing my mind – the ableist terms insane or crazy seemed to apply to me. I was like “holy shit I am going to be broken for the rest of my life”. I had ruminating thoughts that I would say out loud “you are piece of shit”.
The other part is that this seemed to amplify all my Autistic traits. My sensory sensitivity and hyperacusis were so much more sensitive. I was constantly thinking of how to end things on a level I was not able to deal with.
My hyper empathy was always turned on and unignorable – I am still trying to dampen this effect as it’s slightly defective for me right now and I am bordering on having the disorder due to it.
One of the ways this really affected me during this time was when Chadwick Boseman died during the BLM protests in the United States. I didn’t talk about this at the time because it was not a white persons place to grieve publicly. But I saw all of my followers start talking about the intersectionality of the issues surrounding his death – he was the first Black superhero that gave Black people a role model (he’s my favourite character in the MCU), the BLM protests were on, white supremacy’s insidious manifestations apparent in the White House, thousands dying each day due to COVID-19, disability and working through illness – it overwhelmed me on an empathy level, I was in serious pain personally due to this.
On top of this injustices in my life not related to me specifically had kept being brought to light. People who I cared about were suffering the effects of mental health problems due to this.
I unravelled from this point onward pretty fast. I had lost any sense I had of personal safety. I didn’t give a shit about me because this world wasn’t made for me. I started seeing the effects of neurotypical society that is so incongruent with who I am as a person, and I felt like I would never fit in this world.
I snapped. I can’t talk about this (can’t discuss why either), but I ended up creating a whole lot more issues for myself.
Then complications to this justice sensitivity emerged. It was the straw that broke the camel’s back. I attempted suicide. I got discharged from hospital that day and tried again that night. I was gone at this point. There was nothing left but anger, sadness, and the overwhelming loneliness of my soul.
I told my wife I needed to be committed. [This luckily didn’t happen as the ward was full – I know now that this wouldn’t have made me better]. Everyone in my family agreed. I was so ashamed also of myself. I thought I’d never belong again. I thought I was never worthy of love – I kept hurting the people around me by hurting myself. I needed to not exist.
It took me a long time to get out of this state, in that time I was given a cocktail array of different medications to try and treat symptoms, and I think a few made me worse.
What got me out of it?
I am still not sure if it’s gone completely… I just know what it is now. I can deal with it.
I am not sure what got me out of the crisis part of this. It wasn’t the therapy I was in (that actually made it worse – I kept getting massive anxiety from thinking I was bad or failing at therapy – and the way it was delivered wasn’t suitable to my needs).
I think discovering this has helped me a lot. Having a name for the reason why you do things is so important. My diagnosis was so important to understanding myself. I have developed so many coping techniques for the negative symptoms of Autism. Reading up on Autism by Autistic people has made me validated.
I can never truly convey the horror of this time.
I don’t think there’s an easy way to actually let you know how bad this is. Most people I know who’ve gone through it don’t want to talk about it. This is fairly unique among Autistic people – as we usually are quite comfortable sharing everything – trauma is something we’ve usually all gone through and so talking with each other about it helps. But talking about this reminds us of it. I… I can’t let anyone else have this happen if I can help stop it.
I keep coming back to this statistic in my mind – 90-97% of adults with Autism don’t have the correct diagnosis. Hyper empathy. This. No. Please fuck no.
I’m going to go and cry for a while now. It nearly cost me everything, and I mean everything, my goals, my life, my wife, my family, my sanity, my finances, my housing, my ability to connect with anything…
This is a poem I wrote at the time. I wrote it the dawn of my first day in hospital under suicide watch.
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.
Getting people to do the ethical and moral thing is hard
There are few things in this world that make me disengage from the world or more angry than when people do not follow the rules they set themselves.
Over the past ~11 days I’ve been campaigning to stop a child torture device from gaining funding on Kickstarter.
It’s been a series of threads on Twitter…
How it started…
How to traumatize yourself or child with ADHD.
A beeping sound every 8 seconds… wtf. This would be pure hell
Yo @kickstarter this is really bad. I guess I’ll also lodge a complaint through the site. But this will torture kids.
The one comment on this shows exactly how dangerous this is:
“I backed cause I want to help, but also there’s no evidence”.
Don’t torture your kids. That’s a start position.
This thread shows how to report it.
Alright thanks everyone who’s reporting and RT’ing this – I need to mute this thread because thinking about it every time just makes me so upset. Thank you so much ❤️🥰 If I don’t like your quote tweets or whatever assume I would have ❤️
I really don’t want to live here anymore… fully funded child torture device. Will no reporters cover this…
It breaks so many of @kickstarter’s own terms of service. It’s a breach a lot of us in the ADHD/Autism community reported. I’m glad you guys all think that emitting a sound every 8 seconds at the back of their neck with a sticky device is acceptable.
Seriously fuck justice sensitivity and the rest of you not fucking having it.
We’ve been trying to get media to listen. Too busy talking about the “burden” on parents of kids with autism to care about this stuff that actually prevents harm.
Just to clarify – I am not suicidal, I’d just rather live on a planet where people care about each other, not try and shock them into submission based on their own ideals. Thanks to those who expressed concerned – I should have made that a bit clearer.
Here was my response from @kickstarter when reporting it. Everyone else who reported it got the same response. They care about money – not people with neurodivergence:
I found out about this because it was posted in a parent support group unironically – kinda glad I monitor those things… Parents are always looking to cure their kids rather than support them. Self-advocates have so much work to do.
Also sorry for no TW/CW. I’ve been enraged about this since it’s discovery – I’ll be sure to be more careful in future – thanks to those quote tweeting it that do this. 🙂
They say they are taking action – the main person involved posted an update to call it “wearable tech” they are trying to get around their own terms of service – they can’t see the ethical concerns.
please everyone sign the petition I’ve created to stop kickstarter selling a device that beeps every 8 seconds on the back of neurodiverse children’s necks. This will harm children and officially reporting it went nowhere. RT
It takes two seconds (if you have an account) and not long if you don’t, I know http://change.org is not a perfect solution but we need everyone we can get to sign this. It takes a minute of your time. Practice some radical empathy – sign the petition please!
This is used mainly on non speaking autistic children. It’s part of an unproven approach to treat autism. It’s like a shock collar for dogs, which are already banned in most places. Why is this allowed for a child?
Earlier thread. @kickstarter has denied us or lied every step of the way on this.
This method and device are already being used in NZ I’d be happy to write a piece on this – there’s no science to back their claims.
Going to try and tag some bigger accounts that care about social justice stuff/
Please if you could boost this. I really want to put as much pressure as possible on Kickstarter. Explanation here. Please help me stop it
I’m pretty disappointed, stressed, and dismayed. Less than four days to go on this campaign. Since discovering it on the 10th of February after it was shared in a private Parent Support group, I have not been able to stop thinking about it – justice sensitivity would not allow me – not when I know the harm this will cause.
When I received my first rejection email of my report I was not surprised.
No one listens to neurodivergent people. It’s clear your organisation thinks us to be less than dogs, as even shock collars for dogs have been banned in most places.
This was a clear violation of your Prohibited Items Policy in at least three areas:
“Any item claiming to diagnose, cure, treat, or prevent an illness or condition (whether via a device, app, book, nutritional supplement, or other means).”
“Projects that promote discrimination, bigotry, or intolerance towards marginalized groups”
“Projects that share things that already exist, or repackage a previously-created product, without adding anything new or aiming to iterate on the idea in any way.”
You initially rejected these claims. Then you lied to other submitters and said action was being taken, in which nothing has happened.
You left me no choice to start a change.org campaign – as at this current time it has garnered over 8250 signatures:
I implore you to read the comments. Tomorrow I will be talking to several reporters about this.
The one thing I absolutely didn’t want to happen is the project creator to get dog-piled from people on the internet, specifically only naming them as the campaigner and using gender neutral terms to describe them.
This has now happened on their private Facebook, all of this harm could have been avoided if you had honoured your own policies.
At this point I will accept nothing less than:
The immediate removal of the Kickstarter campaign of a device banned in Canada, the origin country that is being producing it. (EDIT: dysgraphia error on this line – it should read the “origin country that is producing it”)
I’ll expect a full report into how your approval process works, and the multiple failures of your company to follow your own policies.
A written apology outlining what you will do in future, as well as to me personally for the time you have wasted due to not following your own rules.
Some charitable donation to an Autistic or Neurodivergent Organisation of my choosing.
A donation to support me to actually help ADHD and Autistic children, and to support the advocacy work I have done – this is optional.
If there is no reply to this email or the campaign completes.
I will start the next phase.
I’ll lodge a class action lawsuit against your company for selling unapproved medical devices without the approval of the US FDA and the Canadian Health Authority, through lawyers who have offered to bring a case pro bono.
I have made a lot of board game purchases over the years. I thought you were an ethical retailer as you had a policy about not doing this. It appears not.
Please don’t abuse children.
Honour your terms of service.
Independent ADHD/Autism Advocate and Researcher
Don’t mess with people with justice sensitivity. We will harm ourselves constantly to make others lives better.
This has been so incredibly taxing mentally for me. At the same time this is going I’ve been meeting with politicians locally, talking to educators, talking to researchers, planning my next research.
All I want to do is stop the torture of kids and this unethical company can’t even meet the lowest bar… I am tired. This should have been over so long ago.
If they don’t think I am serious about taking them to court. They’ve never met me.
I’m running out of spoons, and the burnout at the end of this crusade will be most likely be brutal – BUT – if ADHD, Autism, Dysgraphia, Dyscalculia and Crohn’s disease can’t slow me. This milquetoast crowdfunding platform definitely will not.
[CW: Suicide ideation, bad drug side effects, bias research most likely]
DISCLAIMER: THIS IS NOT MEDICAL ADVICE, I HAVE NO QUALIFICATIONS, INFORMATION IS ONLY TO BE VIEWED AS IS. DO NOT STOP TAKING MEDICATIONS WITHOUT TALKING TO A DOCTOR/PSYCHIATRIST FIRST.
ANOTHER IMPORTANT NOTE: IF MEDICATIONS WORK FOR YOU – THAT’S VALID – THERE IS EVIDENCE THEY CAN WORK TOO!
THIS IS JUST MY EXPERIENCE IT WON’T BE UNIVERSAL. I’VE PERSONALLY HAD REALLY BAD SIDE EFFECTS FROM MEDICATIONS – I AM BIASED AGAINST THEM.
Read my disclaimer again.
Read it. This is not medical advice.
This will be BIAS. I have had very bad experiences with mental health medications and I honestly have felt like a labrat most of the time, I have extreme bias in this area – but i’ll show some studies and provide evidence for my claims – these probably have a selection bias [I’m also only using studies since 2013 since the updating of the DSM-5 – unless they are used to justify prescribing stuff].
I’ve tried to be as impartial as I can, but it’s really hard for me when finding evidence and comparing it with my own experience…
THIS IS NOT MEDICAL ADVICE, I HAVE NO QUALIFICATIONS, INFORMATION IS ONLY TO BE VIEWED AS IS. DO NOT STOP TAKING MEDICATIONS WITHOUT TALKING TO YOUR DOCTOR/PSYCHIATRIST FIRST.
Autism has been signaled by some to have a pharmacology problem
This isn’t just my view… this is also a view that has been talked about in esteemed scientific reporting publications recently:
Here’s the pull quote from the article linked above that’s relevant
It’s time to look at evidence behind prescribing medications to treat autism…
I will look into classes of drugs here – they have categories – some have more rigorous evidence than others, but I really want you to take a note of how many participants and what age they are. I also want to note that in review studies a lot of the reporting on whether these drugs have helped or hurt has come from parents/caregivers of people with Autism, rather than those with Autism themselves.
There are a few studies that I will be pulling primarily from here as well as Australian recommended (not official) prescribing guidelines based on evidence:
The role of drugs in the treatment of autism – by Australian Prescribers in December 2020 – They note here: This information is not intended as a substitute for medical advice and should not be exclusively relied on to manage or diagnose a medical condition.
In the following sections I will use my own personal experience – then analyse the science behind prescription.
This is from an Autism/ADHD ONLY perspective – I am not able to speak to the effects of these drugs in confidence for any other group of disorders as I have no lived experience and have not done research into efficacy, issues etc.
Generally known as classes of ‘anti-depressant’ medications – have been used for other things – but this is their main purpose.
My Personal Experience with SSRI/SNRI medications.
I have been prescribed a lot of these, I actually only have major depressive disorder in winter (known as Seasonal Affective Disorder(SAD)).
I believe I have “treatment-resistant depression” which I have not been diagnosed with – but I meet the diagnostic criteria to feel comfortable enough to self-label like this.
I also was never diagnosed with Autism while on these – I have only been diagnosed this year.
A quick summary of my prescription history with SSRIs, and my perceived side effects:
Fluoxetine (Prozac) [SSRI] – Prescribed at 26 for depression. No obvious effect, still suffered depression.
Venlafaxine(Effexor) [SNRI] – Prescribed at 28 by a public psychiatrist when I looked to get diagnosed for ADHD – told it was my existing depression – changed my medication to this. This is the drug that caused the worst side effects in me – massively increased suicide ideation, full body central nervous system ‘zaps’ when moving. Told to persist with these extremely negative side effects for over one month. Got really close a number of times to committing suicide, it was all I thought about.
Citalopram(Celexa) [SSRI] – Prescribed at 29 after a break taking anything for my “depression”. No effect. Still depressed.
Sertraline(Zoloft) [SSRI] – Prescribed at 31 after lack of results with other SSRI’s. This has an effect, it definitely reduced my suicide ideation – this was gone most of the time except for really bad days. I was still extremely depressed, but not suicidal. The downside here for me majorly is I lost all joy in life – it stunted my emotional range significantly – I discussed with doctor and weaned off this in 2018, but had to resume after a number of really bad things happened to me, until weaning off again in 2019.
I gained a lot of weight on SSRIs. I also had a slowing metabolism due to aging. However I have tapered off all of them now and my weight has stabilised.
My review of evidence for SSRIs and SNRIs for treatment of ASD/Depression
So I am just going to quote pull quotes from papers here – these are not my words but the words of the scientists.
I’m super dark here. I did a bit of research and I found one of the most egregious studies for statistical manipulation, bad sampling and advice to prove a hypothesis when initial statistical measures failed – it’s on Venlafaxine treatment for Autism Spectrum Disorder.
I’ll link it below. THERE ARE SEVEN NON-PLACEBO SUBJECTS IN THIS TRIAL – ONE WITHDRAWS. This is their conclusion – no conflicts of interest declared:
If twelve is not enough to draw this sort of conclusion in vaccine and autism link science. SIX IS DEFINITELY NOT ENOUGH. If you read the study it’s a near perfect horror story in bad science. This study is often included in the meta-analyses/statistical reviews that I look at as a reliable source.
Anti-psychotic class medications
I only have experience with two medications here. I don’t have experience with the main one they use to treat behavioural problems in children. I will again list my personal experiences and then the results. I will talk about some of the science behind others I have not been prescribed.
My Personal Experience with anti-psychotic medications
I was put on anti-psychotics last year – I believe now that I was going through Autistic Burnout – I basically started breaking down in real life, all the time, my mood was uncontrollable, I’d dissociate for hours on end, I’d get locked in OCD like patterns. I started self-harming, I also ended up attempting suicide for the first time ever. I was starting to fall apart before this happened so that needs to be taken into consideration when I talk about these things.
Quetiapine (Seroquel) – Prescribed at 36, when I was on it at my full dose (200mg), it did calm me down. It worked, but I was an absolute zombie – I couldn’t think and would often just sleep. When the effects of it wore off – the rebound effect was extreme. During one of these rebound periods, due to missing a dose I attempted suicide. I did have external extreme factors here but I really felt – not in control – probably more so than before I started it. I realised it was affecting my mood really badly when we came out of winter and I was still wrecked with anxiety and depression. I started tapering off, and it made me stabilise. I also got peer support throughout this time that helped me. I can’t differentiate which of these helped me but I believe personally that peer support and tapering together helped me get out of “crisis”.
Olanzapine(Zyprexa) – I was given this to help me sleep after complaining about the effects of Quetiapine. I lasted two nights – it gave me unbelievable restless leg syndrome to the point I wanted to cut off my leg to stop it. It was so intense. My psychiatrist was very understanding in stopping this quickly.
My review of evidence for anti-psychotics for treatment of Autism
I’ll review them all individually… starting with the ones I have taken – then going into ones that also have been mentioned frequently
11 subject study (8 boys, 3 girls) with Quetiapine – open label (not placebo controlled)
Risperidone and Aripiprazole
So this is the one class of medications I’ve had significant improvement from. They help me with inattention issues, and I can usually focus with them. The science here is also the best – it far exceeds any other medication I’ve seen BUT ONLY IN PEOPLE WITH ADHD OR COMORBID ADHD/Autism. The issue I have here is that I have ADHD too. I don’t know if these effects I talk about here personally will apply to people who only have Autism.
My Personal Experiences with Stimulants
Methylphenidate(Ritalin, Concerta and other brand names) – This was the medication that I was first prescribed for my ADHD. I thought it was working for me, but it’s likely to have been a placebo effect upon reflection. I couldn’t get the drug to work over 6 years of different release forms, brand names. I had profuse sweating and tachycardia (increased heart rate) as permanent symptoms.
Dexamphetamine(Dexedrine, DextroStat and other brand names) – Dexamphetamine changed my life. It’s the only pharmacological treatment that has worked for my ADHD symptoms. I don’t mean this in a small way, I can actually do stuff I hate doing with Dexamphetamine. I don’t know how much of my Autism symptoms it reduces – I also had my mental health crisis after starting this medication but I do not think it’s related as effects have subsided, and it’s a short term drug that I wasn’t taking during my “breakdown”.
My review of evidence for stimulants for treatment of Autism
There’s no studies done here that are of statistical validity or otherwise – no results can be concluded. It’s shown to decrease ADHD symptoms in people with co-morbid ADHD. But not enough studies have controlled for this to make any conclusion.
These studies are all small scale – the overwhelming majority of them focus on children and not adults.
Data is missing often for participants who drop out – reasons are not listed.
There’s ethics issues with doing wide-scale studies which makes prescribing medicines hard to do with scientific vigour.
All medications have significant side effects which may result in NET-NEGATIVE effects
Weight gain is a near uniform side effect across all pharmacological treatments for Autism, except for stimulants which suppress appetite.
Lack of placebo controlled double blind studies is a huge issue – considered the gold standard in research.
Pharmacological treatment of Autism is really not based on great science. There’s a lot of harm that can occur that I can speak to personally. It often feels like I am a guinea pig for the cure-de-jour. I think an article best summed up current issues – here’s the pull quote:
Only stimulant medication has worked for me but that’s probably due to my co-morbid ADHD.
That’s it, the other times I’ve basically been subject to side effects with little or no benefit. Because of this I am extremely skeptical of pharmacological interventions in Autism treatment.
This kinda leads to my next blog post which is going to be challenging the medical paradigm as the main method of mental health support. It’s going to be a long one – this is the area of research I am now most confident in – and I can speak to non-pharmacological experiences that have helped me the most – more than anything except stimulant medication.
Common anecdotal Auditory Processing Issues (not sure this is related to the specific Auditory Processing Disorder). These are some less known presentations (even among people with ADHD/Autism), that I have observed in myself and I have had others say they relate to. The only science here that discusses these effects are to do with the cocktail effect and group situations(I’ll explain below).
I like to refer to these processes as Audio Queuing.
Audio queuing is a term that I don’t know if it has been used much (if anywhere), or it’s definitely not recognised well in science for ADHD and Autism. People with this issue have discussed this briefly on twitter in discussions, and a lot of this is based on my own observations in life.
What is audio queuing? Audio queuing is the process of hearing speech from others during tasks we are concentrated on and queuing it for retrieval, or in some cases allowing that audio input to interrupt and override what we are doing. Sometimes this information isn’t stored (ie we are not actually listening at all), but a lot of the times when you assume we haven’t heard – we have – it’s just lost in processing somewhere.
These also affect us in two major ways – listening to music, and in group situations.
I’ll explain my hypothesised category of presentations.
Subtypes of Audio Queuing
retrieval and recognition
override and interrupt
Latent queuing: The first presentation is what I like to call latent queuing. Our brains are processing a lot of information all the time – with increased sensory sensitivity we take a lot more in. When we are in hyperfocus, we will often queue what has been said to us to answer after.
Sometimes this can literally take hours to do. The information is stored somewhere by our brains, and then retrieved when it believes our queue of more important tasks is finished. I’ve answered questions hours later and had to give context.
Retrieval and recognition The second part about audio queuing is that quite often we will be accused of “not listening” – this can happen, but there’s also another thing that happens with queuing. We will ask you to repeat yourself or to clarify – it’s suddenly all there after the first word
The first syllable primes the memory that we didn’t know about for retrieval. Unfortunately – this means we usually interrupt you to say “yes we have got it” – people then think that you are rude because you don’t care. But we actually know what you’ve said.
Override and interrupt The third way the queue works is when we are typing or writing out information – this is known as overriding and interrupting for me. If you are talking loudly or talk to me when I am typing sometimes, I will process your audio by typing out what you have said unconsciously. Your audio has “hacked” our language brain.
Major ways these effects influence us in everyday life
Music I love music with lyrics, lyrical content and the ability to relate it to my situation – everyone does this. But I can’t actively listen to music where I cannot relate to the content. Melody is important, but I’ll listen to stuff ‘outside’ my genres if the lyrics are good.
However, lyrical content is usually extremely hard to listen to and perform a task at the same time (there are exceptions – if I know the music well vocals usually blend as an instrument).
Generally though – if I am working – I need instrumentals. It’s not that I dislike music for this reason, but because all of these queuing issues can happen while listening.
The Cocktail Effect The cocktail effect is the ability to listen to only one conversation in a room full of people. For me, even a second set of people having a conversation close to me is a nightmare as I parse both the conversations at the same time
But this actually overloads our processing queue. We can get so lost in trying to process two conversations because we hear them with this weird queuing system. It gets to the point in large groups of talk there’s so much processing that we cannot even hear our names. This has been observed in science, but not really explained as to why this occurs. They refer to it as a ‘filtering’ issue but I believe it’s more a processing issue.
Advice to allies of people with ADHD or Autism
I believe these audio queuing problems are another reason why group social situations are super draining – not because we don’t care or like to socialise – but we are dealing with massive overloading of the one system we have that has a queue. Masking has a huge effect not to be downplayed here.
Small groups with one person talking is better. The best way to communicate with us is one on one. We’ll be able to read and understand you much better. We don’t get lost by sensory overload. Our focus is usually on the person in front of us.
Meetings actually make us tune out due to overloading us – if you can – make it an email.
I was going to write about school and education generally, but for now I’d like to focus in on one part of my life and one institution that made me feel worthless, drove me to dark places, and never really tried to sympathise or make accommodations for me.
The University of Auckland
Here’s my Academic Transcript from the University of Auckland. At all stages of this education I was undiagnosed for ADHD/Autism/Dysgraphia/Dyscalculia – I had a diagnosis of depression and I had Crohn’s disease at this point. The latter will become a major feature of academic and medical trauma.
[I’ll cover a part of the seven year gap in the second part to this, but want to highlight here how badly I was screwed over by this system. Specifically University of Auckland]
2001-2002 – My First Attempt
The first semester, I never attended lectures. I was straight out of high school, doing a degree I thought my family would want of me.
9/11 had affected me in a massive way – I had my hyperfixation on US politics basically amplified permanently by this event – I know so much about the US political system – and it’s all useless information for me.
By the end of the first semester when I reached the age of 18 I was heavily abusing substances. My life was falling apart.
I had to withdraw in Semester One of 2002 due to falling too far behind, and not having any mental health to tackle study, I was working a fulltime job as a Barista to afford to live on top of my full-time study – this is not unique – most students still have these appalling conditions.
I applied for compassionate withdrawal and the university denied me. This was the first time I had to eat the costs of a full semester of study I would never complete or even have a hope of completing. I was lacking “evidence” for approval, and it went on my permanent record – I was told many times of how bad this would look despite being in a severely compromised mental state.
2009-2011 – My Second Attempt
2009. One of the worst years of my life.
I returned to University of Auckland at the age of 26. I had become inspired by Barack Obama’s victory in the United States. He gave me hope. [This would become a huge disappointment obviously for me].
I wanted to work at the United Nations – as I believe this will help as many people as possible. I was looking at 5+ years of University. In order to get accepted into most of the programs at this point in time you needed a Masters degree in some sort of International Relations or Politics. I was going to study Bachelor of Law/Bachelor of Arts conjoint degree, then do a Masters in some field related to this.
I am able to study from home here due to having an amazing Mum.
The first semester everything went perfectly, aside from the fact in essay exam subjects I was constantly marked down for having incorrect sentence structure, and I know from research that markers also implicitly mark down for bad handwriting – which I had due to dysgraphia. In spite of this – I managed to achieve B+ in the two essay subjects [International Relations and Law and Society]. Everything is on track.
[Side note: Sociology allowed me to name the things in society I had hated since seeing the movie Fight Club at 16 – it’s here I first learn about Capitalism, what it is, how it manifests, why I hate it].
Second Semester – Crohn’s Disease is the worst…
[CW: Crohn’s disease complications – graphic medical descriptions – trauma]
Unfortunately at this same time, I have been pushing through constant Crohn’s disease pain for several years at this point on a medication not suitable for the type of Crohn’s disease I had, due to a private gastroenterologist who wouldn’t stay current in science.
In the second semester I realise that I feel full all the time, then I realise I haven’t had a bowel motion in days. I am very sick at this point. I don’t realise how sick until the morning I started vomiting up black stuff. My Mum takes me to the doctor. At this point I am 86 kilograms.
I go into hospital. I have to wait five days for an MRI despite being unable to eat, and digest food. The reason for this is that the MRI machine room has flooded. I keep attempting to get better by eating food, and requesting laxatives. Nothing helps. They were looking at getting me an MRI at Auckland Zoo if it wasn’t resolved by the 6th day, luckily that didn’t need to happen.
The MRI comes back, it’s the worst possible news in regards to Crohn’s disease – my bowel has closed completely for a 20 centimetre section. No food can be digested. I will I have to have an operation to remove this bowel and join the sections back together.
The pain management team offers me an epidural but tells me that there is a chance that it could go wrong and have serious complications – they say it’s 5%. I am terrified of the implication of having something inserted into my spine after a lumbar puncture taken by a student when I was 20 with pneumonia as their first ever attempt. I consented when delirious with a 40 degree fever, it wasn’t pleasant and the worst thing you can possibly hear during this is “no not there” from the supervising doctor.
I was really terrified for the first time ever going under that I wouldn’t wake up.
The surgical team was amazing – they did an exceptional job here, I don’t need a stoma because the resection is done so well.
However, I get out of surgery and I am in the most excruciating pain I have ever felt in my life, and my pain tolerance is very high from living with chronic illness. I am on fentanyl and ketamine, but they can’t give me enough to stop my pain without knocking me out. I am in the recovery room for 4 hours.
Eventually they put me back in the ward. When I wake up I am in excruciating pain again, I have a pain pump but it doesn’t give me enough pain relief. I page the nurses multiple times but the “pain management team” is not available as it’s night time or the nurse refuses to call them – for some reason my recollection here is not the greatest… I spend the entire night in absolute agony, I do not sleep during the night.
I have my fentanyl increased the next day, however I am hallucinating due to the ketamine. I think the pain is a video game, and if I survive the next night I will be ok. Then I wake the next morning in the same pain again. I don’t know how to talk to anyone about this. I have my Mum with me in hospital most of the time – it’s been hard for her to watch me like this.
My recovery is slow. I am fed via lipids pumped directly into my heart via an IV line in my neck as I have dropped below 50 kilograms and I am suffering from severe malnutrition. All I can taste and feel in my mouth at all times is oily texture. It beats the alternative which is death, but I am broken.
I get visited by friends from my Law class, when I am well enough for visitors. The look on their faces tells me everything I need to know about how I look, I haven’t seen a mirror or shaved in weeks, the only bathing done by the amazing nurses on staff. [Nurses were the best part of the healthcare system – still are].
I reach out to the University of Auckland. I keep them as informed as I can, I am massively behind at this point. On top of this StudyLink has been trying to cut my student loan payments while in hospital – due to being in hospital. I had to fight this too.
I get discharged from hospital. Most of my muscles have atrophied and I can barely walk. I need to get back to University or I will have to wait an entire year to get into second year Law. I am depressed. I am sick. I am pushed well past any reasonable limit. There is no psychological support after having this major life event happen. I had a physio and that’s it.
The University makes some minor accommodations for me, but I realise it’s an impossible task to overcome – I still need to finish within the semester, and the one month on top of being this sick is too hard to overcome. I ask to withdraw, it ruins me mentally – they refund no fees.
I am treated like garbage in the welfare system as is everyone else – Paula Bennett made this a fucking nightmare. I am made to attend “how to get a job classes” and to fill in a form sheet while waiting for the new year to start. I am sick. I am sore. I am humiliated and dehumanised. The system is still like this. The majority of you voted to keep it that way.
[CW: Suicide ideation]
I somehow manage to have the mental fortitude to return. I decide to pivot into Psychology – I took an intro paper in 2009 which I had to withdraw from and it became a hyperfocus subject. I had the hope of becoming a clinical psychologist. Yes, I realise this would be more than just waiting to get into Law school, but I questioned whether the UN was even worth it after studying International Relations in the previous year.
One weekend a close family member has had a significant concussion. I won’t go into further details for their privacy. This means I move out of home and into flatting. I have to work 20 hours each weekend doing tech support on a rotating roster that has me coming in at 08:00-18:00, 14:00-00:00, or 00:00-10:00. It rotates every weekend.
I am still severely depressed.
It’s here I realise that I have ADHD after studying it in Individual, Social and Applied Psychology. I tried to get diagnosed in the public health system and was refused. I believe all the bad things I thought about myself. I am given venlafaxine that makes me want to end my life constantly and I can’t leave bed. I have no accommodations made for my depression, and I only end up attending labs to make sure I get the grades.
I think I am 90+ kilograms at this point having rapidly gained weight from a diet of fast food due to lack of time, and well… ADHD.
In one of my psych papers I end up writing an essay on whether being homosexual is either genetic or social. I am bi, I get extremely fucked up from this experience. It causes me to doubt everything about myself – academic science effectively erased us for most of it’s history. As someone who believed heavily in science, I was just ruined from this essay.
I get increasingly burned out. I haven’t given myself any time to rest since my operation – I have to get a degree – this has been drilled into me for years. I have ADHD, I am working and studying 60 hours+ a week to maintain grades and try and focus on my course. My grades are slipping – but it must just be due to personal failings like laziness or a lack of intelligence (due to the fact I have not been diagnosed with ADHD – internalised ableism takes years to undo).
My Crohn’s disease has returned again. I have a massive flare and have to push through it. I am put on prednisone, this ruins my mood. I make it through this year, but I just keep getting worse.
I force myself to go to summer school – I am trying desperately to make up for my lost time. I start studying Criminology. I realise I want to do Criminology and Psychology. I still want to be a psychologist. I still want to help people.
In the first semester I finally break. I have a massive Crohn’s flare that makes me end up in hospital. I have to withdraw again. No fees refunded. I can’t continue. I am depressed to a level I have gotten used to.
2020 – My Masters and Third Attempt
I qualified to get into a Masters program (I will discuss how in Part Two). The course seems incredible, but it actually is deceptively bad, and in some ways what happened saved me from destroying a part of who I am.
COVID-19 hits – the weekend that it really got bad in New Zealand is the weekend after the two week period that I can withdraw from the course for free.
I call first thing on Monday morning – having not attended any classes at 9am when the University opens and ask to withdraw – going on advice from the WHO about people with chronic illnesses and asthma as the New Zealand government forgot about disabled people until level 4. They deny me – they say I will forfeit half my fees if I do so.
I get a Medical Certificate from the doctor and send it in. They do not process it for months. In this time I get emailed from my tutors asking where I am, and why I am not attending class. I explain that I haven’t been able to attend and that I notified the university.
The University of Auckland sends me a “tell us how we’re doing” email. I fucking told them. A few days later my withdrawal has been processed and my fees refunded. The course related costs I took get transferred to WINZ debt as “Fraudulent Student Loan”. Fuck everything about this system.
Someone asked me why I don’t have qualifications and seem to know so much about ADHD and Autism… and why I didn’t want to pursue University education.
This is why.
The system is broken, it doesn’t care about students, it cares about bleeding people dry for fees – and penalises the disabled. I will never return to a University ever again, unless by some miracle these problems are fixed and if I do, it will never be the University of Auckland.
Yesterday was tough. Far harder than it had to be. I basically lost an entire day of “productivity” due to the combined effects of rejection sensitivity and justice sensitivity. I’ll explain why it’s important you understand how these interrelate with each other, and how damaging framing can be.
What is Rejection Sensitivity Dysphoria?
(NB: Not an “officially recognised” diagnosis but 98-99% of adults with ADHD say they have it and one third say it’s the hardest thing to deal with)
It’s a serious part of ADHD and Autism.
Which brings us to our second social sensitivity – this one has been hell in the last few years especially.
What is Justice Sensitivity?
This is not true of all people with ADHD – but definitely among people with the “inattentive” presentations of ADHD – I have found this to be extremely true. People with Autism often have this trait also.
Yesterday was a perfect storm – justice sensitivity and rejection sensitivity COMBINED
When a justice issue is related to me personally – I am caught in a hurricane – I am severely limited in control to how I respond. Social stigmatization is one of the hardest things we need to challenge with mental health conditions. ADHD and Autism especially are incredibly stigmatized. No one listens to us either.
This study came out yesterday:
The framing here is awful. People with Autism or ADHD are not a burden, we are people, we have incredibly difficult lives in a world not built for us. We’ve been told this our whole life from nearly everyone – every sector of society discriminates against people with ADHD and Autism – I’m not going to link evidence here just google “ADHD/ASD and Discrimination/Stigmatization” . Every sector of society punches down on people with ADHD and Autism. Diversity initiatives only seek to exploit us, and ignore those with the most needs all too frequently.
I thought the study might be different and maybe media had reported it wrong. Here’s the abstract from the article.
Notice how there’s no framing here about how it affects the kids or people with Autism – no consultation about how to frame this. The article title is “Stress and distress in New Zealand parents caring for a child with autism spectrum disorder”. The journal article itself goes into a lot of detail about issues of support and care WHICH WAS THE PURPOSE OF THE ARTICLE. But the abstract and framing talk of Autism as a burden, you should expect to only be burdened having a kid with Autism.
How did I react? About as well as you can imagine.
Love seeing studies about parent strain. LOVE IT. Especially love it because one of the effects of having a kid with ADHD when I researched is having your parents divorce before age 11. Average was 3-6. I was 5. But lets just keep talking about how stressful it is w/o support…
Everytime an ADHD or Autistic person sees these studies who is now an adult it’s a trigger for trauma. But go off about media being ethical and shit.
All this does is REINFORCE the ableist narrative around autism or ADHD, there are fucking great parents out there who spend time educating themselves and shit – ones who know how fucking harmful it is to keep talking about “BURDENS” constantly.
Sorry my existence was hard for my parents. They chose to have me.
ADHD people have enough trauma of their own without constantly being reminded and wondering if they have been the main reason their parents divorced.
Hate that this shit derails me from what I want to achieve in the day. It’s involuntary on my part – I have rejection sensitivity and justice sensitivity. Attacking a justice issue that is related to me triggers both – I don’t get a choice about responding at that point.
Things were just made worse by people defending the article – especially parents of Autistic children. My reaction to this:
You’re absolutely not able to speak with authority on ADHD/Autism if you are just a parent and without. The worst harms I have are by my parents, even though they had “good intentions”. Our lives are constant discomfort, sorry you had to endure the decisions you made having kids.
Then when I tried to explain how harmful it was they just talked over me and explained away their position. I’d like to state not all parents did this – there are some amazing allies and parents of kids who have Autism and ADHD who understand that constantly framing the “burden” narrative actually severely undermines their mental health.
Emails to a researcher involved in the project
Subject: Thanks for reminding me this world isnt made for me.
Your research was personally harmful. No actual autistic adult input. You can know that this has triggered my suicide ideation quite heavily. Shame on you.
An Actually Autistic Adult.
Email to Researcher
This isn’t a lie. I had not thought of suicide at all for a long time. Yesterday I started doubting the work I am doing.
They emailed back.
First email response – no idea what this was supposed to mean
Second email – was much clearer and “apologised” for offence caused (this isn’t an apology) – but just highlighted everything that’s wrong with research at the moment:
Just saw this.
I can’t agree more that it is important to conduct research which considers the views and experiences of people with autism, and one of our more recent efforts at AUT has focused on the experiences of adults with autism.
Likewise, the focus of this research was on parents’ experiences, which is also an important perspective.
The intent of my research was not to make you feel negative about yourself, far from it, but rather provide data that can be used to lobby the government for better support and resources for people on the spectrum.
I sincerely apologise for any offence caused.
Second email back from researcher
My reply to this:
Sorry – as you probably know justice sensitivity and rejection sensitivity are part of the condition. I cannot stop myself from speaking out here. It’s almost entirely involuntary. I know usually these errors occur out of a lack of knowledge of how stuff affects us, but that’s entirely the point.
A paper like this previously came out just a few weeks ago in another country. I understand your paper says you want to increase care but the way it’s been framed in the media and the journal abstract makes it sound like people with Autism are just burdens, this is an attitude we’ve had our whole life.
We are people, we have lives – usually incredibly tough due to the way we are treated, and the adaptation mechanisms that we use to try and survive.
Thank you for replying. I appreciate what you were trying to do, but it’s caused a significant amount of frustration and hurt even if unintentional.
EDIT – 12/02/2021 – The researcher in question has been extremely kind in responding and we are hoping to meet now to discuss the issues around this and potential further research avenues – which is a good outcome from an awful exchange started on my part. I know why I acted in this way – and I can explain it, it’s not an excuse.
The work I am doing has me hopeful about changing things, even though the only person to listen at the moment is Chlöe Swarbrick (Mental Health Spokesperson for the Green Party in New Zealand).
When no one listens generally, it saps my motivation – but I keep going for the people who are supportive, who do listen, and who also live with these conditions. I will keep going – even though I feel like I am screaming into a void at times.
Which brings me to my point – listen to people who say stuff is harmful – if they say it’s harmful don’t do it – agree and pledge to better
I love that people just brush off our concerns constantly.
“This is harmful.”
Massive diatribes about why context is important, how it’s not fair to them.
Haven’t thought about ending thing for months, but you made it come back. Well done!
I’ll be ok, I am just reminded of how impossible the task is ahead.
This lesson is true of any affected population – young people concerned about climate change, racial minorities, those with disabilities.
If someone tells you something is harmful don’t do it.
“If someone is able to show me that what I think or do is not right, I will happily change, for I seek the truth, by which no one was ever truly harmed. It is the person who continues in his self-deception and ignorance who is harmed.” – Marcus Aurelius.
The terms around neurodiversity are controversial for many reasons. If our goal is to improve mental health for all we should maybe think about adjusting terminology.
Issues around current terminology
Neurodiversity is not clearly defined. The term has been co-opted by many ableist organizations pushing the “superpower” narrative of living with Autism especially and using productive and capitalist language to talk of inclusion.
This focus in the neurodiversity movement has made some, especially those with higher needs due to increased severity, to feel excluded by this movement.
Neurotypical – this is possibly my biggest issue with language at the moment. What is a neurotypical person? When I see this used it’s always in a negative framing. There are many who feel isolated when we use this language, also people who are undiagnosed may feel excluded, they might not be neurotypical, but due to the ambiguity around the definition do not identify as neurodiverse.
Neuroplasticity – there is substantial evidence that the brain can change dependent on factors in someone’s life. If we limit to lifetime conditions in our definition of Neurodiverse then people who experience short-term mental health issues (which do happen) feel excluded.
A set of new terms, and clarification of existing terms.
Neurotypical should go (in my humble opinion). It’s divisive in nature.
Neuroinclusive/Neuroinclusive Society/Neuroinclusivity as the movement– this means anyone who has different ways of thinking including long-term disabilities, varying severity, temporary mental health problems, with a strict definition to exclude productive capacity from using this term. It should be a movement focused on increasing positive outcomes, especially those with the current highest needs as a priority.
Neuroexclusionarysociety instead of neurotypical. In the context of growing up in a society that was not Neuroinclusive.
Neurodiverse as a self-identifying term is fine. It should be used in place of neurotypical, this allows opt-in rather than divisiveness. You can also frame questions with ‘or when you were growing up neurodiverse?’
This is an open discussion. Would love to hear your feedback.
DISCLAIMER: My diagnosis was made when I was known as a pākehā straight male (still in the closet rather than bi). I am likely to have received the best possible version of diagnosis and care. There are many barriers to mental health care in Aotearoa New Zealand at the moment, but these are near universal. I’ve mentioned them here.
If you have just been diagnosed or self-diagnosed:
You are valid. You are a good person. The things that have happened in your past can always be forgiven as long as you embrace a growth mindset, and understand your weaknesses. Things get easier. People with mental health conditions will love you implicitly. There’s a community for everyone. Don’t struggle alone. You are not the productive worth that capitalism has tried to define you as. You are unique. You deserve love.
I’m always on Twitter if you need to vent or talk – if I don’t respond it’s because I am sleeping or busy but I will respond – I will never judge you or share your personal details with anyone. My Twitter is @roryreckons – DMs are open. It’s a safespace – I will never violate your trust. I cannot always offer advice but I can let you know that you are not alone, understand you, and point you where to start on this journey.
My condensed mental health diagnosis timeline
1988-2000 – in school have a conduct disorder I am pretty sure here, teachers dislike me. Also have never diagnosed dysgraphia and dyscalculia – these are never detected in my education anywhere.
~1993 – start showing symptoms of depression I think I had (due to suicide ideation starting at this age).
2001 – Substance abuse problems – during this time someone says if I don’t react like others to amphetamines I might have ADHD (this is the first time I thought about it).
2002 – Have the start of major depressive disorder. I have been messing up in life a lot. Mental health is never discussed anywhere in society, except to stigmatise the “crazy”.
2009 – Diagnosed with depression – started on Fluoxetine (Prozac). No effect.
2009 – Learn about ADHD in university – believe I have it, but most science here says it only occurs in children. I have also been masking behaviour for a long time, and making adaptations to cause depression and anxiety from this issue. I don’t think it can be me.
2010 – I can’t get it out of my head that I have ADHD. It describes me too well. I talk to my doctor about it – they tell me it’s highly unlikely, but I push for a referral to the public mental health system. I take everything I can for evidence – school reports etc. The public psychiatrist doesn’t even entertain a diagnosis – says it’s my existing depression, changes my medication to Venlafaxine. I have a severe adverse reaction to this and I am told to persist for a month before they allow me to discontinue despite extreme suicide ideation and full body central nervous system zaps whenever I move.
2010 – Sleep issues constantly – prescribed Zopiclone [Doctor dislikes this long term]. Switched to Temazepam – severe adverse reaction – no sensation in extremities. Switched back to Zopiclone – been taking it pretty consistently for the last 10 years.
2011 – Switched to Citalopram (Celexa) for depression. No effect.
2013 – Switched to Sertraline (Zoloft) for depression. No effect.
2013 – Switch doctors. Tell them I think I have ADHD. They tell me they know of someone they can refer me, cast doubts on this doctors ability to diagnose. Get a referral. Spend 3 hours in assessment, costs an unreasonable amount of money, take supporting evidence (School reports, Academic records, Work History). Do a TOVA test – this showed ‘moderate’ ADHD-C. Doctor believes I have it and prescribed Ritalin. Go to fill my script for the first time and the pharmacist asks me “Do you really need this? Your doctor is just known to prescribe it.” I say yes – this fills me with doubt about my diagnosis.
2013-2019 – Spend most of my time in denial here – medication is not working, I try short release, long release, combinations of stuff, believe I can “cure” my ADHD symptoms with medication.
2016 – Put on Lorazepam for regular occurring panic attacks.
2019 – My renewal for medication is up, and my Doctor has retired. See new Psychiatrist – he says I definitely have it, switched to Dexamphetamine… IT WORKS.
2019 – 2020 – Become active on Twitterabout my ADHD, connect with the mental health activist movement – start relating to ASD related memes that talk about specific effects not related to ADHD. Take an online test. Says high chance of Autism Spectrum Disorder
2021 – Diagnosed “officially” with ADHD and ASD with comorbid depression and anxiety – only after undergoing a mental health crisis in the previous year related to justice sensitivity which meant I could access free mental healthcare.
Self-diagnosis is valid – if done honestly and correctly
That doesn’t mean to say “everyone is a little ADHD”, or that if you took a quiz on BuzzFeed that said you might have it you have it. But there are a number of self-diagnostic tools – ADHD Self Reporting Scale (ASRS rev, 1,1), Wender Utah Rating Scale (WURS), Mind Excessive Wandering Scale (MEWS) – when taken with honest intent a high score on these tests should indicate that you might have ADHD, these tests are used as part of the ADHD diagnosis process.
I knew I had it, everyone I know who has been diagnosed as an adult knows they have it. The world is not the same as other people experience. People in your life are constantly frustrated at you for things and you don’t know why you do or don’t do them.
There are significant barriers to accessing ADHD diagnosis, until these are addressed – self-diagnosis is valid.
What to expect after diagnosis in my experience
So the instant thing you will feel after diagnosis is relief. There’s a moment of release where suddenly the reason you’ve been struggling on hardmode with tasks that should be simple that you know you want to do but just can’t all makes sense.
This is very short lived. What comes next and how the people in your life treat you will have lasting effects on your outcomes. It’s time to discuss the grief of adult ADHD diagnosis.
The ADHD Diagnosis Grief Continuum (people call it a cycle but it’s non-linear)
This is what happens pretty much after you get your diagnosis. You get a brief moment of relief, then your ADHD negative self talk brain just goes for it. “You’re lying”, “You are just looking for an excuse”, “Convenient all the bad things you didn’t like doing and play back in your head constantly could possibly be explained by this”. Everyone goes through this. The absolute worst thing you can do to someone here is question their diagnosis. Especially if you are in the medical industry.
It’s really important if you have just been diagnosed to understand that everyone goes through this – it’s a phase – this one does go away.
My pharmacist and primary doctor cast aspersions on my diagnosis both before and after my diagnosis making me believe I didn’t have it – they fed into my self-doubt. That combined with negative conditions in other areas of my life made me question whether I had ADHD, I didn’t leave here til 2019 after getting a second diagnosis with a new psychiatrist.
[NOTE – NOT OFFICIAL MEDICAL ADVICE BUT BASED ON MY EXPERIENCE: If your meds aren’t working after several adjustments – talk to your psychiatrist about changing medications – in recent studies it has been shown that dexamphetamine is more effective at treating adult ADHD than methylphenidate (Ritalin). The reverse is true for children. They only work for ~60% of cases for either medication – don’t be like me, demand change within 12 months if you aren’t seeing effects after diagnosis.]
This part is going to come up a lot. The denial phase you can get past, however anger will keep hitting you in unexpected ways. Common anger responses are “how did people in my life miss this?”. “Damn x person for treating me this way for having ADHD”. “I can’t believe how many people have been awful to me in my life for this”. These are acceptable things to be upset about – but you will not grow if you allow them to consume you.
The truth is little was known about ADHD, a lot is still not known. The only people you can actually be mad at here is research scientists who never considered how biases might affect their perceptions of ADHD and it’s presentation. They let down the medical field, who let down you – and the snowball effect has made every sector of society buy into the deficit model of mental health. This is still occuring. Science has improved but there’s a lag in the medical field with current practices.
So you have accepted you have ADHD. But now it’s about curing it. You look into therapies, you try everything, there’s studies, evidence – breakthroughs – new tech potentially to ruin your brain with. You start doing everything you can to negotiate your way out of being “ADHD”. You strive to be “normal”. You strive to just be able to do the things that others can without having “this” about you. A lack of support here can really damage people too – they personalise their ADHD failings still as character flaws and think there’s a way to “cure” it. You can not cure ADHD.
Hello old friend… most people diagnosed as adults will have a comorbid diagnosis of depression.
The bargaining didn’t work, you don’t know how this affects you fully yet – there’s so much information everywhere, you must just be bad at doing ADHD management. You fall into depression. ADHD is still having an effect on your life but you’ve been diagnosed and the meds are helping – why are you so bad at this you ask…
This is the final stage. You can cycle back all the other phases here, or you can accept.
You have ADHD. You are different. Your brain is not the same as other people when it processes and stores information. You have problems with focusing attention, not the ability to focus. You will have bad days. You will have good days. You are an ADHD person, and it affects you in nearly every part of your life. You no longer believe that you have moral failings due to ADHD. You adapt and make what efforts you can to resolve your negative ADHD symptoms but you understand they will never go away.
Acceptance is the hardest stage to reach. It took me until mid-late 2020 to finally reach this stage. I’ll tell you what can make it easier.
Ways to improve outcomes [Tools/things I learned that helped me]
YOU HAVE REJECTION SENSITIVE DYSPHORIA
You do not respond to criticism or perceived criticism in the same way that other people do. You have rejection sensitivity from years of being told that you are not good enough, not trying hard enough, not applying yourself. This manifests even when you get good advice – and it can be devastating if you respect the person who gives it – it causes a wild mood swing that makes you feel extremely depressed or angry – but will usually pass within hours. A better article on this specific part of ADHD can be found here: What You Need To Know About Rejection Sensitive Dysphoria – by René Brooks | Black Girl, Lost Keys.
Find a mental health community support group on the internet
This part is absolutely essential. You will be feeling alone, the people around you might not have the condition or have limited experience with it. They will not understand you in a way that other people with this condition do. I use ADHD Twitter, I also use a discord and a Facebook support group. I shopped around a bit for a discord community because there are a number of them. There’s also usually local or regional Facebook pages for support.
Educate yourself – using resources written by ADHD people for ADHD people
It’s very unlikely that you will get good advice from people without ADHD on how to live with ADHD – the quality of material here is bad. It just is, it’s either passively insulting, or suggests stuff for us that will not work. There’s no one right way to manage your ADHD symptoms – but be super skeptical of any claims made by people who are not affected by ADHD. It’s absolutely vital you do this. I kept trying to use tools developed to manage my productivity, cleaning, and general life management USING non-ADHD people backed tools. They rarely will work (if ever).
This one I really didn’t learn to do this properly until 2020.
The act of doing this will make you a better person. Connect with the mental health community. Follow disability activists. Follow racial minorities and Indigenous people and start helping them.
This ended up teaching me how to empathise with those who had harmed me in my life. Especially my family. I am not going to say that you should forgive people who are obviously toxic and show no sign of repentance – but if your family has unintentionally hurt you through a lack of knowledge – practicing this enough in real life will help you to get to this step. The amount of unintentional harm that has occurred in your life will be a lot. We love to commit the attribution bias to protect ourselves – but sometimes people do bad things with good intentions, they are not bad people.
This is incredibly important not only for others, but you learn to turn that radical empathy inward. You start to forgive yourself. You start to heal. You can start to become the person you want to be.
Cut toxic people out of your life if you’ve tried educating them
This is hard too. This will hurt – but you need to assess if people are constantly denigrating you for your ADHD, an occasional joke will be ok in the right context, but people who demean or insult you should be either ghosted if you cannot handle the confrontation – or confronted (this is better and will work sometimes but it’s hard due to Rejection Sensitive Dysphoria).
If they are absolutely vital due to familial ties or cultural reasons – mentally prepare yourself before and after when dealing with them – but don’t be afraid to do this – I’ve never regret doing it.
Know your RIGHTS in the workplace. Join your union.
Discrimination of ADHD in the workplace was present my whole career(s) except one job. It’s essential that you know how your ADHD manifests, how it affects you, and how to advocate for yourself. The brilliant Ashleigh the Advocate in New Zealand (very context specific – please research workplace rights in your own country) wrote this guide on knowing your rights: ADHD and Employment Rights – Know your rights.
You have a disability, you are disabled. [There’s nothing wrong with this term – any other version of this term is a form of ableism]. They must make accommodations for that. A union can help you with disagreements – you really don’t want to be facing this stuff alone and they are the best source of legal recourse if you need to actually make a complaint. I repeat you do not want to be alone during this process.
Morality and ADHD
I am a practicing Stoic philosopher. I describe that a bit here: My practice of Stoicism (Redux 2021). There’s a few articles on ADHD and moral development. You will most likely have been stunted in your growth in this area due to how you have been treated, you’ll most likely have a chequered past of bad relationships, potential criminality and substance abuse – things you attribute to moral failings. It’s kind of essential you learn about this stuff imho – if you already know it that’s fine too.
Here’s some tough love about your actions – ADHD is NEVER an excuse for abusing others, it can offer an explanation but it’s not an excuse. This scene might hurt but you need to understand the importance of accountability – this show is brilliant.
Once you have processed this video. Now take all the bad stuff you might have done, when you get the playback reel that tells you you are awful, if you have changed and grown since it occured or it was related to untreated and undiagnosed ADHD – throw that stuff away – it won’t help you holding on. You take accountability and you move forward – GROW.
My Story – What is a good person? (HINT: There are no good or bad people)
When I started watching The Good Place, I became interested in philosophy. I started listening to a podcast on the history of philosophy – Philosophize This! – This is an excellent podcast – use the 1.2x or 1.5x or even 2x feature to actually have people talk at an ADHD brain interesting speed. Do not force yourself to do this either – you need to have a decent interest or it won’t work.
The Wisdom of Marcus Aurelius
In that podcast I discovered Stoicism. Stoicism had some exceptional quotes. A book called Meditations by Marcus Aurelius (last of the five good emperors of Rome) is something I now carry with me everywhere – please note man could be interchanged for person here – it’s a 2000 year old book that I am quoting verbatim. Here’s a few quotes that I love and try and live by:
“The happiness of your life depends upon the quality of your thoughts.”
“Waste no more time arguing about what a good man should be. Be one.”
“If you are distressed by anything external, the pain is not due to the thing itself, but to your estimate of it; and this you have the power to revoke at any moment.”
“Accept the things to which fate binds you, and love the people with whom fate brings you together, but do so with all your heart.”
“If someone is able to show me that what I think or do is not right, I will happily change, for I seek the truth, by which no one was ever truly harmed. It is the person who continues in his self-deception and ignorance who is harmed.”
“If it is not right do not do it; if it is not true do not say it.”
“I have often wondered how it is that every man loves himself more than all the rest of men, but yet sets less value on his own opinion of himself than on the opinion of others.”
“When another blames you or hates you, or people voice similar criticisms, go to their souls, penetrate inside and see what sort of people they are. You will realize that there is no need to be racked with anxiety that they should hold any particular opinion about you.”
I could honestly quote from this book forever. The advice in this book is exceptional. I was drawn to Stoicism for it’s practice of virtue ethics – or always striving to be the best version of yourself.
Understanding that you are only responsible for your thoughts, feelings, and actions towards other people that you can control is one of the key lessons of Stoicism. This stuff takes a while to sink in and you will fail at it constantly – self forgiveness is the key.
The Good Place (Spoilers and Quotes)
One of the things I like most about The Good Place is it’s main themes. That there are no good or bad people. That with love and support all of us can change. That taking action is how you become good.
Here’s a handful of my favourite quotes from the show to round out this post.
“What matters isn’t if people are good or bad. What matters is if they’re trying to be better today than they were yesterday. You asked me where my hope comes from. That’s your answer.”
“We choose to be good because of our bonds with other people and our innate desire to treat them with dignity. Simply put, We are not in this alone.”
“If all you care about in the world is the velvet rope, you will always be unhappy no matter which side you’re on.”
“The fact that it makes you nervous is exactly why you should do it.”
“Come on, you know how this works. You fail and then you try something else. And you fail again and again, and you fail a thousand times, and you keep trying because maybe the 1,001st idea might work. Now, I’m gonna and try to find our 1,001st idea.”
“The point is, people improve when they get external love and support. How can we hold it against them when they don’t?”