I know you won’t get this till it needs to be written. I wish it could have arrived sooner. There’s some lessons you needed to learn, but they came outside of school.
You’re bisexual. Not gay, not straight. You love anyone who loves you back. It’s something you should be proud of, and one day you will. People will question this about you probably for the rest of your life. As for whether you end up with a man or a woman… we’ll, this leads to the next part.
You know how you don’t feel like a man and you prefer hanging out with girls at school? That’s ok too. You can be friends with women, people will lie about this too. Your also not a man, you’re beyond that. You are non-binary. You don’t fit into a neat category. You might have already noticed you are different in some ways. About that…
You’re neurodivergent. You are ADHD and Autistic – this explains why the world feels different to you. You need some good noise cancelling headphones, you need to wear sunglasses if possible. There is more to know but I have to prepare you. Unfortunately due to this you will be told you are a liar constantly, no one will believe you.
Your parents didn’t divorce due to you. Your teachers are going to be awful to you (but not all Mrs Humm will help you). You are not going to grow up to be Hitler, the books you read due to this belief are going to haunt you. It will be hard. You will start to obsess over this. It will cause a lot of harm. At some point you will find out you have OCD. It’s tough always, but it gets easier sometimes.
I’m not going to lie to you. You are going to run away, you are going to end up using substances, being addicted, people will do unconscionable things to you frequently.
You know how you love helping people, and seem to learn a lot about things which you wish to share – never stop. It might take a while to realise this as others will consistently hate you for it. You still don’t know why. That is actually your best quality.
University isn’t as important as you think. It does teach you that you were lied to in your education and in your upbringing about Māori people. This will hurt to find out. Lean into it. You won’t know this till after you’ve finished, but you actually learn better outside of a structured system. The thing that makes you believe it’s important is just adults projecting their wants and needs onto you.
You are going to want to quit a lot. You are going to eventually believe that being in this world is a mistake you must correct. You are wrong about that. You are not a burden, you have been burdened. I wish I could stop you, but I know you have to find out yourself.
All these things are true. You will hide them from shame you are made to believe by the culture you grew up in, but I promise you sharing these things will set you free.
You are going to dislike everything for the next few decades. You have reason to. But there are things about you no one can take from you.
Disabled – but that’s actually awesome. It helps you discover important things.
It’s always disappointing to see the same problems occurring in the media around mental health, and especially neurodivergence. Not only were there a number of factual errors, but the very people meant to help us have made clear their ignorance.
There are extremely tough barriers to getting a diagnosis, sometimes self-diagnosis is all we get. Especially if you have intersectional identities.
I’d like to make a passionate defence of self-diagnosis. I’ve been in the mental health & disability advocacy space for just a little over two years. An unpaid often extremely emotionally demanding activity that we do because we care deeply about other people, especially those who are facing the difficulties of unidentified neurodivergence and helping those already identified.
Listen to the experts they tell us, they know best. If I did that I’d be dead. I’ve seen a doctor about 200-300 times in my life for 37 years while I accrued a various assortment of physical and mental health problems, with them completely missing the root cause. I have been diagnosed with asthma, dermatitis, Crohn’s disease, anxiety, seasonal affective disorder, panic attacks, and I’ve had to battle substance use issues.
I’ve known since I was a young child I was different to my peers. I got a lot of the labels that neurotypical people give us when they don’t understand how our brains work. Labels like lazy, stupid, crazy, idiot, thick, too loud, too quiet, too intense, too much, insightful, an old soul, a know-it-all. I’ve been asked consistently by people in my life what is wrong with me. A few times people derogatorily referred to me as Autistic.
When I tried to get help people told me I was overreacting, I should “be a man”, and harden up. I wasn’t believed by my doctor for a year when trying to get diagnosed with Crohn’s disease, they said I was looking for excuses. A year later I was diagnosed, put on an unsuitable medication for the type of Crohn’s disease I had, and a few years later I lost 30cm of bowel that needed to be resected.
I got diagnosed with ‘depression’ that year. But I knew I wasn’t depressed for no reason, as science tried to tell us at the time, this was apparently a biological problem resulting from a chemical imbalance (which has been found to have no basis). Medication did nothing for me. I had learned at University in psychology that I definitely was an ADHDer. I had irrefutable proof in my school reports in childhood.
I argued with my doctor to give me a referral. They told me it was unlikely, but referred me to a public psychiatrist. I took all my evidence. They didn’t even look at it and said it was not possible and changed my antidepressant. I nearly died taking venlafaxine. When I contacted my doctor about the full central nervous system zaps I had, the unbelievable head fog, and a near relentless suicide ideation. I was told to persist and it would go away. It didn’t, and I missed a lot of University due to being unable to make it to the course due to these effects.
I got put on another antidepressant medication. It did not work. I spent the next two years at University burning myself out, getting extremely sick, and ending up in hospital with Crohn’s disease flares.
I couldn’t complete my degree. I stopped trying, until a few years later. This time studying software engineering. I was doing well as computers are a hyper fixation of mine, and I could hyperfocus. However, for some subjects I could not focus, no matter how hard I tried. I was determined to get an ADHD diagnosis at this point.
I took all my evidence to the one doctor in Auckland who specialised Adult ADHD at the time. After a three hour assessment that went into every detail of my life, a T.O.V.A test, and an interview with me and my wife. I was diagnosed with ADHD-C. Given Ritalin and a pamphlet on the Christian faith for education. The pharmacist I took my script to said “Are you sure you even need this? That doctor just prescribes it for anyone”.
Medication helps for some traits, but I still had no idea how my ADHD manifested in every part of my life. The dominant narrative at the time was that ADHD was a superpower. Reading information available online in official publications made me feel like I must not have it, and the pharmacist questioning me made me fall into actual depression. It had been reinforced in the education system that I was a bad learner, so I stopped looking.
I must just be a lazy, irresponsible, uncaring person. It meant that I couldn’t advocate for myself, and caused issues with being abused because of it.
Around this time I started getting constant anxiety, I also was having panic attacks at work. I had been rotated onto other antidepressants, and was on sleeping pills regularly. I had massive complications from Crohn’s disease. It eroded my self esteem completely.
In 2019 on Twitter, I saw someone tweet about ADHD, more specifically it was my life. I saw myself, I found out so much about how things were affecting me, but a piece was missing.
In 2020, I had a “mental breakdown” which I now know was Autistic Burnout It was like a bomb went off in my brain. My senses were on fire, I couldn’t think at all, I’d ruminate, I’d self harm, I wanted to not exist at all anymore. The response was to pump me full of antipsychotics, benzodiazepines, and more sleeping pills. It made me more unstable and I attempted suicide.
My suicide attempt broke me in a good way, I got lucky. I was just mad people needed it to get this bad to actually care. I needed answers, ones not being given to me.
I connected with more mental health advocates for diagnoses I didn’t have, and Autistic people were extremely relatable. After four months of research I knew I was Autistic. Not only that, nearly every perception of what it means to be Autistic is entirely incorrect. We are harmed every day by bad science.
I self-diagnosed. I had it confirmed twice, once at the end of my six free sessions with a psychologist, and a second time “officially” with a psychiatrist, a privilege afforded to me for nearly dying.
Want to know what is worse about this? All the conditions I had alongside this are more common in Autistic or ADHD people. I am a near textbook worst case scenario for the effects of unrecognised and unmanaged Autism/ADHD.
I stopped taking my immunosuppressants after I found a link between stress and Crohn’s disease. I manage my sensory environment which causes stress using accomodations from solutions the experts on this – Autistic people – provided. I received a letter from my doctor yesterday. It’s in full remission according to my gastroenterologist.
I spent 37 years not knowing why my life was so difficult while constantly gaslighted by medical professionals who made my life hell by forcing me to push through pain, weight gain, serotonin shock syndrome. I lost jobs, friendships, and failed academically despite being “smart”. I had no sense of self. I have somewhere in the realm of 30-60k of student loan debts I have for misdiagnosis. I lost 30 cm of bowel due to poor treatment.
Self-diagnosis is valid, and the “professionals” in this industry are some of the people who know the least. I know this because I’ve helped two people with PhDs in psychology realise they too are neurodivergent.
So maybe we could start listening to the actual experts, those who live a divergent life everyday.
This blog is as much for me as anyone reading it. I am focusing on neurodivergent people, but it likely applies more widely to any group that is outside “normal” expectations.
A while ago I watched ‘Everything’s Gonna Be Okay‘ written and directed by Josh Thomas (an Autistic person), which covers the lives of coming of age of Autistic people (a simple reduction of what the show is about). The show gets a lot of things right, and a lot I would have liked to have improved but it’s still the most inclusive representation of Autistic people so far – which is awful.
MINOR SPOILERS AHEAD
There’s a scene in this show which devastated me, because I’ve felt like this too.
In the scene Matilda (Autistic actress Kayla Cromer) reveals to Nicholas (Josh Thomas) who has assumed the role of guardian that she has been crying in the bathroom for hours after the death of her father as well as something that is one of the most destructive yet endemic sentences among neurodivergent people in general.
“I am always a burden”
Matilda goes on to reveal that even though she is Autistic, that due to being higher functioning (labels of higher and lower functioning are ableist – and one of my gripes with this show) she would be fine, but she is not.
I want to unpack this thought and statement, and show you why it’s erroneous.
Capitalism is an ableist structure
I could critique capitalism forever, but one thing about it is that by design it wants to cast aside people who deviate from the norm. Unless you have productive and profit value, you are a problem of the system, and you are made to feel this way. People are more than their productive value – and it’s sickening that our thinking has been this corrupted.
We have enough resources to allow everyone to live with a reasonable quality of life, the problem is how we distribute these resources – and that’s where capitalism is failing us.
I am not going to go too heavily into fixing the structure so much as to show you how it wears neurodivergent people down, makes them lose trust in themselves, and then implicitly blames them for not being able to succeed.
The education system under capitalism
The role of education should be to foster learning and independence, but it has been warped to spoon feed people and make them learn a standardised set of information. The role of education in a capitalist system is to produce units of production for those with capital.
This is the first place for many neurodivergent people that the seed is sown that they are fundamentally wrong, and that they must change and supress their neurodivergent traits. The lack of understanding of how neurodivergent brains work leads to stigmatisation, isolation, feelings of failure compared to peers, and starts eroding the very core of many neurodivergent people.
Masking is not perfect and when we allow ourselves to be ourselves – we are usually punished. Masking is a constant exercise, informed by our previous mistakes, that slowly erodes us away – every time we let it slip and are punished – it reinforces the message that being ourselves is wrong, to do so is to become a burden for others.
The medical model
I’ve written before about my hatred of pathology in regards to mental health issues – I am a strong critic of pathology of thoughts. I have been down the road of thinking of myself as broken, sick, or ill simply for having a different way of experiencing the world. Depression and anxiety tests check to see if you are depressed or anxious, and instead of working out why – you are suddenly labelled as a depressed person, or an anxious person – regardless of whether you have completely valid and often traumatic reasons for feeling this way.
The medical model of mental health is best summarised as this: “You are the problem, take this to fix yourself”
Based on all my research – this approach is at best mediocre at helping people (most medications are not efficacious beyond a placebo effect – PLEASE NOTE: If medication works for you keep taking it). At worst actively contributes to the deterioration of mental health.
I have had medicines that have helped me manage my difficulties, and to help me start to stabilise – but in my case especially, this was as effective as putting a band-aid over a shotgun wound long term.
‘Fixing’ yourself costs money
Therapy is expensive, medications in a lot of countries are expensive, assistive help is expensive. The reason I know all this stuff is expensive is because when I do research I have to endure articles talking about “burdens” on the health system, the welfare system, the workplace.
If you do not have the money, cannot access appropriate and well delivered mental healthcare, you start to believe that your existence is the problem.
It’s reinforced everywhere in media. A system with a psychopathic focus on “the economy” – as evidenced by the vast majority of COVID-19 responses around the world.
An economy is it’s people – no value is created without people.
What if we accepted some people are just different (The neurodiversity model)
Here neurodivergent people are not sick, they do not need a cure, there is no need to find a cause, because the problem is not us – it’s how we are treated. Every piece of scientific research conducted with proper ethical consideration of what they are trying to achieve has said it’s not neurodivergent people who must change – it’s the society around us. We must be accepted, and not forced to be something else – this is the way to massively reduce negative effects and co-occurring issues.
I am not a burden
This thinking eroded me – a lack of acceptance of neurodivergent traits I have and a fundamental lack of understanding of how my brain works caused me to believe that I was ALWAYS the problem – all the messaging in society before connecting with advocates confirmed this to me.
It’s not true. Your value cannot be measured in dollars although the system constantly tries, and you are not to blame for the fact you haven’t been accepted.
I know these things are true because when I finally connected with other neurodivergent people, realised my full set of differences, and started to accept the things I cannot change – I began to thrive.
That’s not to say things are not difficult, or that I have a lot of work to do to untangle the Gordian knot of repeated trauma I have experienced from not being understood – but through proper understanding and acceptance, peer support, writing, talking, and Tweeting about my way of thinking, and what has happened to me – I have come to one main realisation.
I was setup to fail, and then blamed because I did.
I deserved better, as does any person reading this who has been made to feel like their existence is part of the problem. It’s not true.
You’ve done life on hard mode – and I am glad you are still here.
“Thoughts Sometimes, I just can't control my thoughts No medication's ever made them stop All I think about is everything I'm not Instead of everything I got”
No one is born with negative self-talk. Absolutely no one – and yet I can see how it develops. Our society is wired to teach us our flaws, and almost none of it encourages people to be proud of their strengths – much less to know which ones they have themselves.
Recently I have been reflecting quite heavily on just how things might have manifested. There’s something incredibly heartbreaking about discovering that underneath all of my self-doubt there are innate qualities and strengths that I have had and displayed my entire life, even in those times where I was being traumatised.
Part of the process I am going through for healing from trauma is not only processing the memories you have, but also imagining how life might have been different had the circumstances changed, and recognising the strengths you displayed that you never took credit for because you were not supported correctly or made to think about them meaningfully.
Character Strengths and Values
I am skeptical of psychological science, I am even more skeptical of positive approaches to mental health. Why would focusing on strengths or my values help in a world that was constantly telling me about everything I lacked the capacity to do?
And yet… against expectations. I am slowly being converted. In looking back through my life, I’ve realised that my strengths are what kept me alive – at times where everything seemed hopeless in those worst moments – they shone through to protect me.
I am skeptical of one off tests of personality traits, or strengths, values, or anything similar, but I think taken over time they can be useful. I have used the VIACharacter.org test over a series of five separate occasions giving about 1-2 weeks in between in order to see how they change. Using a weighted average system with a low score of 2, and a high score of 10. [The top 5 strengths were assigned a value of 10, the next 5 were assigned 8, the next 5 were assigned a 6, the next 5 were assigned a 4, the final 4 were assigned a 2].
I have come to a clear picture, and with this discovery I have started rebuilding my identity, after losing it for so many years.
These are the results, and this is how they kept me alive.
Love of Learning (9.5)
The cruel irony of this discovery has been thinking just how much I was discouraged from believing this about myself from an educational perspective. I was expected to be great at a lot of things. In an exam-based school I was subject to exams nearly every term. Slowly but surely they crushed out my belief in my ability to learn. I knew the course content, but I have learning disabilities that made writing and reading difficult, these I have adapted to over the years – mainly thanks to advances in computing.
My school reports were those of so many undiagnosed neurodivergent children – littered with backhanded compliments that made mention of some of my capacity to learn without ever considering that their delivery mechanism was the part that had “potential” it wasn’t living up to, and not me.
This has been my internal motor my entire life – I am intrigued to find out how everything works, and I love sharing this knowledge with other people however I can. The only reason I might have salvaged this strength from the depths of despair, is that in times of need – that was where it showed up most.
I self-diagnosed every difference I have ended up discovering before my doctors. Simply because I knew something was wrong, something had to be. The final piece being – hey it’s not just you, it’s also what was done to you. That one piece of advice I needed to find a lot earlier also – but my love of learning was the engine that ensured I survived.
A love of learning and creativity – what a great combo. When I look back through my life I can see why I chose every career that I did, and I can realise why things started fading, and I realise how creative I had to get in order to hide parts of me that I knew people hated.
Creativity gave me the ability to adapt, appearing like a neurotypical. No one gave me direct advice that I had differences to others, so I had to improvise. I took up acting, I entrenched myself in learning how to display emotion in a way that fostered communication that people could understand. I learned how to display emotions in an acceptable way.
I didn’t do this in any light manner – television I was obsessed with, and I used to study human behaviour and social norms. I spent all my time reading plays, watching facial expressions, taking directions from my acting teachers – unfortunately I also taught myself not to be me.
At some point the masks I was wearing started replacing my identity. I remember feeling so fake all the time, so disconnected from the person I was, but I didn’t know masking was the seed. One when watered with constant negative feedback about my existence grew into a total loss of identity – they fused to me in ways that are hard to explain – but a feeling that I will never be the real me is one I have come to accept I will have to live with.
It turned out my life’s work wasn’t something to be written, or spoken – it was the person I came to be. A living piece of performance art with the world my stage. Unfortunately this adaptation couldn’t fix the underlying issues with the script I was given – and so at times where I revealed I was acting – I was punished heavily.
Where would I be without love? Not here for sure. In order to clarify just how this is a strength, I will quote the VIA website.
Love as a character strength, rather than as an emotion, refers to the degree to which you value close relationships with people, and contribute to that closeness in a warm and genuine way. Where kindness can be a behavioral pattern applied in any relationship, love as a character strength really refers to the way you approach your closest and warmest relationships. Love is reciprocal, referring to both loving others and the willingness to accept love from others.
I had every reason in my life not to seek love, and being honest there were times where this faded into the background. For nearly a decade I had decided that I was too broken, too wrong for people to love – I would be a burden to whomever I ended up in a relationship with, and based on my previous relationships that was true.
But my deep need to connect with other people was an engine that drove perseverance through rejection constantly. I wouldn’t give up – even though I lost friends like leaves falling from an autumn tree. Even though most of the friends I had were not friends but instead people who used me as the lowest rung on a totem pole.
Over time this persistence paid off – while there were many errors along the way – finally in my twenties my I found people who were patient with me, direct, and let me know when I made social errors, forgiving me for them too.
I am one of those people who is not hesitant to tell others that I love them, and this need to connect drove the positive social engine of change that allowed me access to a society that more often than not had pleaded for me not to exist.
My belief in love, my love of learning, and my creativity worked together. I spent so many hours researching how to be a better friend, partner, and citizen – I used any source I could find.
This one I am proud of as this is not a strength I had innately – but one that I developed through a love of learning. As I drove myself out of my comfort zone I came to see things in a far different light – I had come to notice that the worldview I was given and the realities of others living in this world did not align.
My need to connect through love drove my need for perspective – and more importantly I needed perspective in order to start healing from the trauma of my past. You see the trauma that happened in me to my life is vast, and you can only see it as a learning opportunity for so long before that layer of armour is stripped from you – and it becomes what it is – meaningless hurt in a cruel world – and you believe that you are doomed to a life of heartbreak.
It never helped knowing that everyone in my life has had it rough as so many counsellors, teachers, and therapists tried to tell me. Minimising the pain I was experiencing and instead telling me just to think positively. It’s impossible to see how to get from A->Z when they start you at the letter Y your first time learning the alphabet.
Contextualising things was a slow process. I had massive areas where I had not spent much time thinking, and instead avoiding thinking about things. It worked, until it didn’t in a huge way. Turns out hiding everything about yourself – especially the pain in your past – has a way of physically and mentally manifesting.
Combining a little love of learning to discover how people may have come to hurt me inadvertently, creativity in filling in the missing pieces of my past, and choosing to look back from the perspective that even the best people sometimes do the wrong things for the right reasons. I came to love again. I restored a strength that had faded from my life.
Most importantly perspective gave me the gift of believing I was capable of being loved, and returning it. I have been with my wife for 8 years. My character strengths combining to ensure I did salvage a future.
I’d not be here without the capacity to laugh. Gallows humor has served me well over the years – sure my sense of humor may be dark at times, but without it there would have been no joy in my life.
I was a weak, scrawny kid. I couldn’t fight other people. I could make them laugh – even if it was at me and not with me (and sometimes the fact I didn’t know the difference protected me too). I became class clown young – a natural jester due to the way I behaved – why not put it to use?
Laughing is good for the soul most of the time, but it also drove me to dark places. Self-deprecating humor only works so long as you believe it’s a joke. When you realise that you have internalised the things you have said, it’s often hard to drop the meaning from your words.
I learned eventually how to use this skill again not at my own detriment. Humor was the thing that made my insufferable existence to others easier for them to accept. I was often a diffuser of tense situations with inappropriate at times, but more often than not needed relief from stressful situations.
The best thing about these five core strengths is how they interact with one another – turns out being a humorous, creative, loving, learned person who has a lot of perspective actually makes you fun to have around most of the time, and people often came to me for advice.
My Almost Core Strengths – Curiosity (8), Fairness (8), Forgiveness (8), Honesty (8), Kindness (8)
These I would say I have at all times too – they are core parts of who I am, but I cannot at times bring these to the front. When I get super depressed, I can rely on my core strengths to alleviate suffering. I definitely can see all the above qualities demonstrated. The skills with a score of 8 are still core – but expressed depending on contexts, and I call them forth, rather than having them sit on the surface.
Curiosity was the spark that drove my love of learning, helped me to gain perspective, made me inquisitive about people who hurt me, and allowed me to laugh.
Fairness was gained from understanding implicitly how it is to be treated incorrectly for reasons you do not understand. The need for fairness, drove my curiosity, which in turn drove my love of learning. All these strengths working together to give me answers.
Forgiveness is a strength I thought I would never have. It’s grown over time, my curiosity driving the love of learning which led me to know why people may have acted the way they did towards me – gaining perspective which restored my capacity to love and be loved – and the final step in the journey with forgiveness was the capacity to forgive myself for what I believed I had allowed to happen to me.
Honesty – This is just kind of innate. I hate lying, and I am terrible at it. If I’ve ever made an error I admit it. I think honesty about myself is the part I needed help with when younger. I’d always cherished this skill, but through repeated trauma it fell away. The biggest problem I have had with my honesty is that people have gaslight me when I was explaining my struggles – leading me to pretend that everything was fine… until it wasn’t in a big way.
Again, in an ironic twist, being honest about how I was struggling with not only people who needed to know but random strangers ended up giving me my greatest joy, but it was a lifetime of learning how to communicate before I could make the hurt and anger from my past coherent.
Kindness – What is the point in not being kind? It frustrates me this a strength to be developed, or held innately and not part of the human experience. I know kindness was never shown to me in times where I needed it, and through my perspective I have come to see that often the people who need it most are the people who have the least.
My Middle Strengths – Appreciation of Beauty and Excellence (7), Judgement (7), Social Intelligence (7), and Humility (7)
All of these are displayed in some capacity, I can call these forth when I need them.
Appreciation of Beauty and Excellence is displayed every time I venture into nature – each time I see a marvel of human wonder, every time I see a new world created in video games.
Judgement is shown through my logical reasoning, my ability to analyse ideas, opinions and facts. Judgement allows me to critically assess information in a way I needed in order to actually reach the conclusions I did about my health. All of my diagnoses took use of my judgement skill – spending months carefully analysing and disproving the hypothesis about myself if I could. Judgement allowed me the confidence to know I was right.
Social Intelligence is the long game I have been playing my entire life – understanding motives, studying behaviour, realising that some rules make sense and follow structure and others don’t. This is a strength I bring to the front when I venture out into the world – adjusting my level of masking with the changing safety of my situation at all times. I cannot do this without understanding intents.
Humility is also something I like – which when reading back over this blog you may doubt about me – especially if you come from a culture where talking about your strengths makes you a braggart to be taken down (Tall Poppy Culture is strong in New Zealand). Humility has allowed me to understand my limits and to accurately self-assess my achievements.
These are strengths I had but have been crushed out of me over time. These are the ones that will be developed through the use of core strengths, and ones that I wish to have going forward. Spirituality is the one I am not really phased about – that could subside. But I’d love to believe in true teamwork, be able to lead when appropriate, have a zest for life, and most importantly have a hope for the future.
My flatlining strengths – Bravery (3), Prudence (3), Gratitude (2.5), Self-Regulation (2.5), and Perseverance (2)
It’s hard to be brave when you’ve been as beaten down as I have – but I still show it when it’s needed. Prudence will always be hard for me due to my impulsive nature so it seems to belong here. Gratitude I am trying to develop – can’t you see? I am grateful for my strengths! Self-regulation is hard for me given all that has happened, but I hope in time it will grow again. Perseverance I disagree with the definition here as it’s thought of as completing a task – if you knew how much I have had to persevere in order just to survive, you’d understand it’s not from a lack of trying – sometimes I’ve needed to quit to survive as well.
The importance of knowing your strengths
I have hope, even though it’s not high on my list. I have gratitude even though it’s not high on my list. The only thing that has given me the capacity to use these things is understanding how they got to be depleted.
For my whole life I have been made to focus on everything that I am not, so much so that I lost sight of the things I had. Over the last few months I’ve been doing work with strengths – it got me through winter relatively unscathed by seasonal depression. In those times where I felt weakest and most distraught I turned to my greatest strength – love of learning to keep moving forward – this ignited a spark in the cold darkness that grew a fire through the cold nights of despair. I had something I could hold onto that depression could not take from me – I knew I had qualities that made me worthy of living.
The spectrum of hope and despair
It’s true what everything says – you are your thoughts – change them and you can change your life. The way this message is delivered is important, and no one ever gave me the instructions on how to purify my thoughts so that I could have them without falling into old patterns.
I ended up working those out for myself. Turns out the first step is just accepting who you are even if you hate that person, even if you think that person doesn’t deserve life. This can’t be done in isolation – the key to accepting yourself comes from the ability to see yourself in others. My advocacy gave me the ability to see myself and accept myself as a multiple-divergence human who had significant challenges.
Next it involved a trauma archaeologist look at my past. Honestly realising that my life was extremely difficult, fraught with bad choices, broken relationships, torment, and heartbreak. There were good times too, but I had to find those from expanding out past all the negative memories I had – finding threads of joy in the weave of sadness and failure.
After acceptance came the discovery of the fact things were not all bad – I had strengths. I had displayed them my whole life. It may have taken a psychology quiz, some skepticism, and a healthy dose of “oh may as well try this”. At first I disagreed with my strengths – except one – love of learning.
In time I have come to see how I display these all the time, and more importantly realised that they were the strengths that were modeled for me by those who treated me well. All the people I admired in life have my strengths – it makes sense that some part of my identity would be tied to the desire to be those I had admired, but more importantly they had admired me because I mirrored their strengths. I was an asset to their character, as they were to mine.
It’s only now I have come to talk about these at length. They are what drives me each day, what help me with my weaknesses, and most importantly – they are what I have come to see in others and have given me joy in life again.
People should know their strengths, because everyone knows their weaknesses.
The good news is that as of today (29/08/2021) Dr Ashley Bloomfield has said our R0 number (the rate of infection spread) is now modelling as being under 1. [This means for each new infection, the amount of people that person passes it on to is less than 1 – meaning lockdown is working.]
Unfortunately I have seen an uptick in people talking about serious signs of mental distress in New Zealand at the moment, enough to be concerned that a lot of people might actually be experiencing post-traumatic stress disorder symptoms as a result of the repeated stress of being in lockdown.
I have a lot of lived experience here. Managing my mental health is a daily affair (which is not to say you will have long term issues – most do not). I will give some tips that have worked for me, and ones I have seen others use. I am also not diagnosing anyone – that is up to a care physician.
Use your strengths to start each day!
The truth is a lot of the things that you need to do are going to be hard for you to do while feeling like this, I have chronic starting issues (because I am an ADHDer also) – the most important thing to help me was working out what my strengths were – using VIACharacter.org survey (which is free) and then doing stuff in line with my innate strengths – this has lots of research behind it as being motivating – and speaking from experience, I can confirm it works.
For example: My biggest strength is love of learning – each morning when I wake up – I read a new chapter of a new book and drink a glass of water. This helps me to start my day – even on days where I have had poor sleep. I document using my strength each day – there’s a lot of reinforcement in research for this helping people develop their character. Pick one of your signature strengths you most identify with and come up with a fun way to use it.
Tips for Rumination (Endless Negative Thinking)
If you find yourself trapped inside your head and bogged down in negativity there are a few methods I use to get out of it.
Deep Breathing: When you enter a fight/flight mode your brain tries to conserve energy – doing so actually cuts off oxygen supply used for higher order functions in the brain which give us the ability to reason well. Below are a number of methods to help aid you in this – use whichever one works best for you. There are a number of free apps that do this on phones/tablets too.
4-7-8 Technique – lung capacity needs to be good here:
Meditation[PLEASE NOTE IF SYMPTOMS GET WORSE STOP]: You’ve heard this from everyone, I know I have. Meditation isn’t about doing it right, it’s about bringing attention back kindly when you notice it slip. It can take a while to practice and it will not work for everyone – you don’t need to sit in a meditation pose – just somewhere nice. I use Balance App, but there are a number of free apps to guide you. As I said in the note – STOP if you feel like you are becoming more stressed. Sometimes it can be an adverse experience.
Activate your vagus nerve: I have written about this as it’s one of the most promising new areas of mental health science in the last few years. The vagus nerve is located in your parasympathetic nervous system which modulates the flight/fight response. Here are some easy ways to activate it:
Cold Water – run your hands under a cold tap, or fill a sink and run your hand through the water for about two minutes. Alternatively – take a 30 second cold shower if you can handle it (I make the last 30 seconds of my showers cold each time).
Singing – either in the shower, or somewhere where you wont cause more stress by annoying lockdown bubble mates if you can. There’s a reason that a lot of us sing in the car alone or with people we trust – it’s actually incredibly good for us.
Conversation with a friend – Yep, it can be as simple as talking to a friend – it does need to be vocal in order to activate the nerve – and I’d try and think of good non-stressful topics to talk about during the conversation if you can avoid it.
Body Tapping on a Full Breath: Basically take a deep breath in – hold it and tap your body all over – the vagus nerve is attached to so many systems including our gut/kidneys/bladder – a video on how to do this is here:
Listening to music – Music is incredible – there’s a significant amount of positive benefits to listening to music. Honestly throw on some music, listen to the lyrics, really focus on the different layers and how they are combined to enhance your focus. Try and identify each instrument alone through focus, and then think about how brilliant it is how these each combine.
Exercise: Do High Intensity Workouts for around five minutes (after warming up with a slow walk) or just as long as you can manage. Ways to get heart rate up: Jumping jacks, a brisk walk or run, push ups, planks… – I am not going to tell you how to do it just try and get yourself to feel like you have exercised
Write your thoughts down: The reason we have them rattle around in our heads so much is that we do not process them properly – one good method that has worked for me (and actually helps me get out of having Autistic meltdowns) is to write down the things that are upsetting you. There are a number of ways to do this – I just write down my chain of thoughts as they come – I always try and end my writing on a positive note for my private stuff. [Bonus points if you can use the character strengths you identified earlier, and figure out ways in which you were demonstrating them – this will help give you a more fixed sense of self].
Limit Media Consumption: This goes for social media if you find yourself doomscrolling a lot as well as traditional forms of media. In lockdown – I have limited myself to checking the news once a day during the updates. It’s relentlessly negative and anxiety inducing (working on an opinion piece about this currently). I found even the 1pm press conferences were too much for me to process – so I ended up just reading @FallenRedNinja‘s summaries on Twitter which cover them really well without the live feeling which I found just makes it worse. @farmgeek also puts out a great graph each day with the cases – you can see our lockdown working on these.
Be Kind To Yourself: YOUR FEELINGS AND MOOD ARE VALID. Don’t beat yourself up if you are struggling. It’s ok to not be ok during this. It’s an incredibly stressful life event. Don’t chastise yourself for not being able to just get through it without feeling negative. Self blame is a bad road to take – it can lead you to developing a negativity bias as your brain starts rewiring itself to live in constant fear. As someone who spent 36 years of their life in survival mode – the earlier you can get through this the better.
Seek professional help: If things are not improving – these are the numbers to call or text in New Zealand – or get in touch with your GP.
Roughly this time last year I was falling into extreme Autistic Burnout. It’s a period of my life that to be honest – I am still dealing with the consequences, relationship damage, mental health destruction, and personal implosion that occurred. It was unlike any time in my life.
I didn’t know how I would be this year coming into Winter. Seasonal Depression is extremely prevalent for me. I am trying to work out what it is exactly about the winter season that keeps me so depressed. At best I feel like it gives my often lingering but not clinical depression about the world an excuse to express itself more fully. I’ve had it as long as I can remember. I’ve never had standard major depressive disorder as it goes away during the summer months every year.
There are still ramifications I can’t talk about from this time that are making me revisit it mentally on a daily basis. In the months in the peak of my burnout I did something that made my life far more complicated than it needs to be, and the resultant consequences almost made me end my life.
Seasonal depression was different. It never involved my senses or overloaded me like this did. The Void is my affectionate name for the cognitive space that exists when inside the worst of burnout. Every sense overloaded – every sound like a hammer against the side of my head, tastes too strong, skin on fire from touch, with no means to filter. The biggest challenge for me was controlling the plethora of rapidly negative emotions – pure rage, complete melancholia, and abject hatred – all directed inwards.
I was trapped in this state for months – unknown to me that I was Autistic. This was Autistic Burnout. At the same time my family had to watch me implode – the toll on my wife was extreme. While I never directed my anger toward her – she got to see me with enough rage to scream at myself, cut my arms, punch myself repeatedly, ruminate while staring at walls, break a bone in my hand hitting a wall – every morning waking up with an existential dread that only not existing could prevent.
I spent six months on medications that I believe exacerbated the situation. The seasonal depression part was still here in November and I had no clue why – this hadn’t happened before. I then started tapering off the anti-psychotics they had me on. It was those. They extended it – and they seemed to make me far more unstable as a person as soon as they lapsed.
I eventually was seen by a psychologist in our public system. However, I had incredibly awful outcomes generally. The beam of light I needed out of the darkness was the knowledge that I was Autistic – but what that means outside of the scientific community and text books that fail to understand the Autistic mind – I needed to find the Autistic community.
The Choice to End It
There’s a word that I’ve heard a lot in my life. It’s one that can trigger me pretty easily – “burden”. I am innately familiar with it. I grew up in a critical environment, and I was abused at a young age. Unfortunately the same things that make you an “old soul” are the same things that seem to indicate that you’ve not been allowed to be a child. I was constantly reminded of my worth – told that I was a problem. It was personal – a fault or flaw within me that made others hate me.
Seeing myself starting to destroy my marriage, and hurting my family – I realised I had become a burden to those I had loved most. In Autistic Burnout with no capacity for reason or logical thought and a tornado of thoughts and actions from my past reminding me what I burden I was – as medication lapsed – I rebound and decided it was time to go.
I attempted suicide – I thought that was it. I woke in hospital with no recollection and was discharged that day. I don’t know what I said or how I managed to negotiate a release.
That night I tried again – I’m ready to laugh about this now. Sometimes you fail at something so spectacularly and maybe I need to take this as a sign it wasn’t meant to be. I wanted to drown in the ocean – to be with my Dad as that is where his ashes were scattered. I left my house at 1am at night, with no glasses. I live roughly 8km from the coast where I intended to go.
I couldn’t find my way in the dark – my ability to navigate relies pretty heavily on my ability to see and the entrance to a road I needed seemed to have moved – I was also pretty compromised mentally from the overdose earlier in the day. I gave up trying to find my way to the beach about an hour after only making it less than 2km from my house.
I made it home – and told my wife I would be trying again in the morning – I laugh now, but I was so angry at myself for failing at this so hilariously.
I thought I was resigned to being a “crazy” person for the rest of my days – at that time I agreed with my family to be sectioned voluntarily in a mental ward to protect my family from the harm of them seeing me hurting myself.
I was lucky – the ward was full. The first inkling of recovery came during suicide watch during the three days I was waiting to get seen. A worker who was assigned to make sure I was under watch at all times just treated me normally. Everyone else had been treating me like I needed their worry, or concern. The problem is that with hyperempathy I just internalise that as being a burden more – and it justifies me feeling like crap.
I am comfortable in my discomfort, but I do not like that my suffering causes others to suffer too.
I was discharged. I was still undiagnosed.
The Slippery Staircase Into the Light
I used Twitter for a lot of the therapy that doesn’t exist in New Zealand. Our mental health crisis is going to be major news for many years – unfortunately no one in power is dealing with this crisis as though it is one – the issue also being that it’s been neglected for so long as an area of health that needs treating – we have no means to scale up.
My previous advocacy for ADHD probably ended up saving my life. It was though it that I connected with other neurodiversity movement advocates. It was here I learned I might possibly Autistic. You can read the diagnostic process for having this confirmed – it wasn’t easy.
None of my diagnoses at this point could explain Autistic Burnout. I had Seasonal Affective Disorder, Attention-Deficit Hyperactivity Disorder, and Generalised Anxiety Disorder/Social Anxiety Disorder.
Between November and the end of January, I delved heavily into whether I was Autistic. I had it confirmed twice. In February I discovered Autistic Burnout – as a phenomenon that happens to Autistic people through the extreme pressures of masking every day in society, and constantly coming up short and not knowing why.
That moment was kinda watershed for me – having some understanding of why I seemingly just seemed to break down when I had been able to withstand a lifetime of previous extreme trauma (I score an 8/10 of the Adverse Childhood Experiences, not including the stuff that’s happened as an adult). I didn’t know why this caused me to fall apart.
After discovering I was Autistic I had a resolve to live that I haven’t had in the past. I actually believe I should exist – I know I have a lot to contribute to the world. On my darkest days now I entertain the possibility of leaving the world behind – but there’s an underlying control that won’t happen.
Burnout was the worst and the best thing to ever happen to me – a fitting paradox for me existing as an Autistic person. It was the worst for the reasons above, but it was the best for what is going to follow now.
There is a quote I found around this time that helped me – it’s from When Things Fall Apart by Pema Chodron.
“Only to the extent that we expose ourselves over and over to annihilation can that which is indestructible be found in us”
Pema Chodron – mentions this poster in the book – unknown who first said it
Skirting the Void
This winter was always going to be the challenge. The real test to see if I was deluding myself and I was still the broken, miserable, burden that I saw myself as a year ago – would the effect of the winter season make me regress?
I like to envision my mind as a galaxy, the concepts of space seem to fit in here. My analogy is that trauma that I have had in my life creates black holes in my mind, neuronal pathways are redirected through the black hole – allowing no good memories or light to come though. I got good at compartmentalising these black holes. Limited my capacity on certain things – avoided topics.
Autistic Burnout caused all the black holes to coalesce into a supermassive black hole. The pull of this into a place from which there can be no escape is strong. The ‘flight paths’ for neurons have to take this into account.
I know the Void is there with me always – but I’ve learned getting close will be the point at which I cease to perceive any light in this universe, and so now my days are spent skirting the void from a safe distance.
Where to now?
Making sure that other people can avoid creating their own blackholes – helping others find their way out of the ones they are being pulled towards. Training to be a coach. Making sure in whatever way I can that I improve things for people who are like me – because I know what it’s like to feel like no one gets you or is on your team.
I get to be actual me too – not the many masks I had constructed.
[Disclaimer: I received this book for free to read – no review was part of the deal but I really enjoyed it and I think it’s a good resource.]
This is an excellent book for an overview of ADHD – it’s not extremely scientific although touching on the science of ADHD. The book is written from a personal perspective and with a focus on practical ADHD management and giving a breakdown of the many ways in which ADHD will affect every facet of your life.
Each section covers a different aspect with chapters titled from A to Z (surprisingly based on the title!). The book gives an overview of how the current topic affects you as well as each section providing a number of self help activities or recommendations for overcoming and dealing with obstacles.
It might not have extremely detailed descriptions of ADHD but it deals very effectively with the day to day challenges of having ADHD. Common pitfalls and barriers are recognised, as well as providing a number of recommendations for support to get help with managing your ADHD, as well as systems you can develop yourself and suggestions from Maskell’s own successes in management.
The book can be read in any order with non-sequential chaptering – whatever you are currently struggling with or want to know about can be jumped to without any fear of missing out on content and where there might be applicable cross-referencing Maskell does an excellent job of highlighting the specific chapters.
The book has a UK focus with a few sections or pages dedicated to dealing with the minutiae of the NHS and the current appalling state of ADHD care in the UK (Something New Zealand is no stranger to).
The source material used for research is good, most is peer reviewed research with a few anecdotal or article based publications without peer review but the content is understudied rather than incorrect, and is not based on pure conjecture – there’s a large amount of anecdotal evidence that has no formal investigation based on my experiences as an ADHD person.
Please note – there are a few caveats. Some of the resources recommended will only be available to those who have the means (financially) to access services. The UK advice isn’t very useful for other people (but was interesting to learn about). Light on some of the more intersectional concerns about ADHD.
Overall: This is a great starting point for those looking to manage their ADHD. It contained a few tips for me (who is no stranger to looking for ADHD help advice or trying to implement it). It’s an excellent book to keep coming back to with a number of suggestions to try when you get caught up in a certain area of your life. Lots of helpful advice from someone who has struggled with ADHD and is now passing that information on so that others might find these solutions a little easier themselves!
I have a hard time relating to how things are discussed in medical text books or even online resources. Depression for me is all encompassing – a creeping void of dark energy that seems to drain me completely.
I envision my seasonal depression like a giant well.
Every year I build defences as I climb out of the hole, sometimes I create a new cognitive foot grip. I spend time building the fences around the hole, I create a small staircase that goes from just inside in case I fall in a little.
At the bottom of this well are all the “versions” of me that will never get out. They tell me of all the other times I have fallen in – they remind me that months and a year at one stage were spent in this place.
Even worse though are the parts of me I label the diggers – these parts of me are not content with me simply being kept here a few months every year – they have been digging the hole deeper – they have found mementos from my childhood of when I have done things I am ashamed of – or painful memories and they use them as spades to dig deeper under ground.
At the moment I am in the depression hole trying to find my way out – I have a few foot grips, and I can at least see the light at the top of the hole. I am clambering my way out again and building new stairs that go further down.
I always know it’s coming – but sometimes things happen externally that make it worse – One such thing is doing that for me at the moment that I cannot discuss.
In the middle of the worst period of my life each year I am being made to retread an extremely awful time in my life – it’s laden with tons of trauma not just from the period then but for a part of my life in which I have had struggles previously – one that contains more than a fair few shovel memories for a team of diggers.
No medication has worked for me unfortunately – I have to just rough ride through the experience. It’s been especially brutal some days – one recently was the first in a while where I have genuinely wanted not to exist anymore. The problem with these dark moments is that counterintuitively they are where I need to not be questioned by those who love me.
In this state I am a tornado of self-sabotage. I can limit the damage now because I am aware of it. The people I love closest to me now know to listen if I tell them to not try and talk to me that day – because at the bottom of the pit all I see is the near impossibility of getting out.
There is a ladder – it used to be filled with rungs like:
Now the ladder has life experience which has weakened each rung with etchings that I can’t avoid when I try to climb out again.
Your pets will diethey always do. Enjoy them briefly before they leave you to.
Your friends barely know you exist. Most of them wouldn’t realise if you had actually passed on because you’re awful at keeping in touch.
Your family tried to commit youlast year during Autistic Burnout. They love you still but thought that throwing you into a cell was the best thing for everyone at one stage.
Your interests are meaningless. You cannot organise yourself well enough to be talented at any one thing.
Your goals are a graveyard of failures. There are few things in life that you have truly succeeded at, and you have a litany of failures behind you.
Your future won’t come to fruition. The world is dying through climate change and there is little hope of a good future where you can thrive and limit your eco footprint.
Each time I fall in here I have to fight my demons, climbing back up a ladder that is being eroded by external forces, and I do wonder if one day I will truly get stuck here – taking up a spade to get out.
That day isn’t today – so I will try and avoid the traps and triggers and climb for the surface again. Maybe leaving a few good foot holds for me in the future.
I do not know which of these is responsible for each trait I am going to mention here, it could also be other factors such as unrealised or realised trauma. The overlap of ADHD, Autism and OCD is quite large. There are similar brain structures – so much so that these are considered by some to be the same condition based on neurology.
It is estimated that between 53-78% of those with an Autism diagnosis also have co-occurring ADHD, and around 21% of those with an ADHD diagnosis also have Autism. Source here.
Here I will give you a list of things I have discovered in science that appear to be associated with either ADHD or Autism – The categories might not be 100% with how science currently defines them – the classification and inclusion of overlapping criteria of these things is somewhat open to interpretation.
It’s almost certain no one will have all of these but these occur in higher rates in Autistic or ADHD individuals.
Apraxia and Dyspraxia
Apraxia – is the total loss of ability to co-ordinate and make purposeful movements and gestures with neurotypical accuracy.
Dyspraxia – is the partial loss of these abilities.
Dyspraxia Traits (Sometimes called Developmental Co-ordination Disorder)
May not be able to run, hop, jump, or catch or kick a ball when their peers can do so.
Many have trouble managing walking up and down stairs.
Always falling over.
May not like solid food that needs to be chewed.
Poor at getting dressed.
‘Clumsiness’ – not good at picking small things up; tends to break small toys.
Slow and hesitant in most actions; tends to trip up.
Muscle tone may be high (the muscles seem hard or tense).
Muscle tone may be low (a baby may seem floppy when being held).
Having trouble copying things from the board in school.
Avoiding PE and games.
Delayed language development or problems with speech. For example, speech is odd and inconsistent, so that it is difficult to understand.
Drawings seem very immature compared to those of other children.
For specific information on how dysgraphia presents as an adult there is information here that is the best I have seen.
Dyscalculia – Mental Math Ability
For me the easiest way to think of this is a quite extreme difficulty of doing mental math. I cannot do things in my head.
Again the best source for the presentation of dyscalculia in adults can be found here.
Dyspraxia – General Co-ordination issues
This is considered it’s own thing – basically general clumsiness is something that they consider to be dyspraxia – the uniform definition of these terms does not exist in science – different websites will tell you different things.
Aside from the common eye problems – namely nearsightedness (myopia) and farsightedness (hyperopia). There are some unique considerations related to visual co-ordination.
These problems can usually be corrected by an optometrist with glasses. These can occur with hyperopia or myopia also.
This encompasses quite a few things – but light sensitivity is covered by that (I will cover this later on – in the sensitivities section). Reading problems are also included here, as are writing problems.
Strabismus (Crossed Eyes)
More to come
I intended this to be a far shorter blog – but nearly every sense ADHD or Autistic people have has a ton of co-occurring sensory issues or things that may need to be dealt with at the same time.
On a personal note I am currently in my Seasonal Affective Disorder period as it is winter in New Zealand. This leaves me with a lot fewer spoons to actually do stuff and I am prioritising my ADHD coaching course and trying to maintain my mental health. I will be posting updates less frequently during this time.
I’m pretty subdued at the moment – it’s Winter in New Zealand. Seasonal depression happens every year and it seems no amount of preparation and “wellness” activities will actually do anything to curb this difficult mental health period of my life each year.
It starts in May/June and lasts for 3-4 months. Just doing anything during this period is hard enough, but I have been proactive this year (and every year before it).
I am currently:
Spending time in the sun/outdoors when possible
Staying productive on tasks:
Reading books (still have to write a review for some)
Taking every vitamin
Pretty much everything I can.
It’s like an uncontrollable force keeps guiding me to the darkest possible thoughts and perceived future existence.
I know it’s partially tied to the weather as whenever the air pressure drops so too does my mood, summer or winter. I also know that this time has always been the worst in my life – mid year exams were the worst. My mood was bad, I got sick frequently during winter. I am not so sure if it’s chemical in nature or just an ever repeating cycle of being reminded of the hard times in my life.
The problem with this depression isn’t so much that it’s survivable or that I know it’s short term – it’s the experience of having it that makes it seem inescapable. There are times still where I do wonder if there will be a point at which I give up – I’m not suicidal – just exhausted.
It’s easy to know “this too will pass”, but living through thing you want to be over faster than is possible every year doesn’t bring me any more ease.
“It’s this awful time where all you are ever reminded of in your life is the bad things that have happened or are going to potentially happen is here for 3-4 months – try to think of other stuff but don’t worry I’ll always find a way to link it back to something hurtful” – my Brain.
I do wonder what my life might have been like if I didn’t have to work through so much of my past like unpicking a Gordian knot.
I get intermittent calm – but it’s always robbed of me as soon as I start to get to a point where I feel ok. All I want to do is sleep to be through this time. Taking any medication just makes it worse and often extends the depressive period out over a longer stretch.
I’ll be ok. I’ll make it through. I just have to ride out the darkness.
This song sums up how absurd and futile existence feels at times. Maybe I’ll get my mental health sorted in time to watch the world end.