My Adult Autism Diagnosis Process (New Zealand)

TW / CW // Suicide, Self-Harm, Autistic Burnout, Depression, Honest Mental Health Talk

Please note: I have privilege – I have public healthcare even if it’s slow to respond, I am a white person so when I called the cops they treated me well. I am a masc presenting non-binary bisexual person in a heterosexual appearing relationship – so I most likely got the best care.

Alright I have had a few people enquire about my Adult diagnosis process. I will cover it in detail here – a bullet point summary. I am going to be honest. I hate a lot of what I did here, and it still absolutely breaks my heart it happened like it did – my family was put through hell because I was in hell myself.

  • At the start of 2020 – I am diagnosed with ADHD, Anxiety, Depression, Seasonal Affective Disorder – I am only on Dexamfetamine at this stage – no antidepressants as I have been having massive issues with SSRI/SNRI medication.
  • March I have to drop out of my Masters at University due to COVID-19 – lockdown is relatively peaceful except for the extreme anxiety.
  • April last year I start massively ‘breaking down’ and I have no idea what is causing it, nothing is directly attributable to this time period – we come out of lockdown
  • June I am falling apart in a big way and I am scaring people around me. I have been dissociating, self-harming frequently, I am having regular panic attacks.
  • 9th July I am in a pit of existential dread – I can’t take it – my suicide ideation is almost constant. I call the cops the first time on myself as I have screamed at my wife “I wish I didn’t love you so I could kill myself” – this is a permanent memory I have now. I am taken to the police station and given quetiapine (50mg) to start stopping my “psychosis”.
  • 10th July – I meet with a psychiatrist who advises me to meditate 3x a day and to keep taking quetiapine. They will get me in to see a psychologist ASAP.
  • 20th July – We call the police again because I am still absolutely falling apart – the medication is not helping, and in retrospect I think it was making me more unstable personally.
  • ~21st July – I see a new Psychiatrist who sees some of the trauma that has been giving me PTSD. They prescribe 3x Lorazepam (3mg total) a day, and 100mg Quetiapine to try and stabilise me. I am taking 2xZopiclone (15mg total) to sleep every night.
  • 8th August – I call the police again it’s still not helping things are getting infinitely worse overseas and my hyper-empathy is destroying the core of who I am seeing people suffer. I can’t take it. I have been trying to avoid media but it’s near impossible. I am bumped up to 200mg Quetiapine as well as the Lorazepam. I am seeing my psychiatrist frequently at this point to try and get medication right.
  • 11th September – I can’t take it – so many cumulative things are getting to me, my friends are hurt from the lack of protection in the games industry – many are left with significant mental health problems. I do something I cannot talk about to try and prevent harm – this has extreme consequences – I attempt suicide after missing a dose of Quetiapine. I am discharged the same day from hospital. That night I try again. I end up failing in a pretty darkly hilarious way that doesn’t need discussing. I return home and sleep.
  • 12th September – I wake up the next morning – I just want to not exist. I don’t really want to die I just can’t keep living. I tell my wife I need to be committed into a mental institution. I sign paperwork to voluntarily commit me – but the ward for mental health is full so I am placed in a normal ward.
  • 12 -> 14th September – I am on suicide watch in hospital – I am fully expecting to get committed – I have no access to my devices. I am watched at all times – still on the same medication. A few of the people who have been assigned to watch me make me feel ‘normal’ for the first time in a long time – they just talk to me like I am a person, they get me a book to read. I for the first time in a long time feel like I am not someone who is going ‘crazy’ or ‘insane’. They helped me far more than they probably realise. On the 14th my psychiatrist says that they don’t believe it will help me to be committed into the ward – they sign my discharge paper work. I am still awaiting seeing a Psychologist.
  • 30th September – I finally see a psychologist – I am able to see them for six sessions every two weeks working on DBT therapy. I do not do well in this therapy, I do get some value out of it but it mainly leaves me feeling that I am bad at therapy – a lot of therapy doesn’t seem to be suitable to ND people – there’s a communication issue.
  • 9th October – I have been interacting and following a few Autistic people on Twitter due to my ADHD advocacy. One of my mutuals posts an online Autism test – it says I have a high chance of being Autistic – I don’t know what to do with this information because I have really awful ableist views on what Autism is, and I don’t believe it can be me because when I learned about Autism in psychology it said Autistic people can’t think for themselves, are not social, and cannot have empathy.
    This is not me. I start researching a bit about what Autism is – the top search result is well… Autistic people know what it is – and it was awful information. I start looking into the dominant narrative around Autism in research.
  • Decemberish – I finally talk to an awesome person on Twitter about my concerns about being Autistic as well as ADHD – at this point after interacting a lot I realise that I knew absolutely nothing about what Autism actually is – this person states to me that they think I likely have it. I end up going on a research binge. I am pretty certain I have it which is why I talked to them.
  • January – I am improving (because I have been using Autistic advocates methods for dealing with the negative effects of being Autistic in this world). On my last session with my psychologist I point blank just ask “Do you think I have Autism Spectrum Disorder?” They tell me they think I am ‘Atypical’.
  • Februaryish – I talk to my doctor who is back again and ask them if they have it on file that I am Autistic. They tell me that is not there and has not been sent over – due to NZ privacy laws a single handwritten copy of my notes exists in a metal filing cabinet. I find out I cannot be “officially” diagnosed by my psychologist under NZ regulations. I discover the concept of Autistic Burnout – I cry, a lot. I finally had an explanation for what happened to me – because I still had no clue about that part of being Autistic.
  • Marchish – I only seek official diagnosis as I want to contribute to Autistic research and to do so with some organisations I need an official diagnosis. I ask my mental health nurse (who I will say here has been the best part of the entire mental health system – I am so so grateful for them, they are the best person, although we got off to a rocky start) to see if I can get an appointment – they organise this for me – it’s May 10th before I can get an appointment.
  • This whole time I have been advocating about being Autistic – there’s no doubt in my mind that I am Autistic and I have spent nearly every waking moment since late November researching. Trying to dig through fact and fiction that exists – picking apart the science. I compile a ton of evidence based on what I know
  • May 10th – I deliver a presentation to my psychiatrist – who is actually a really awesome person to me and treats me with a level of dignity I admired – they tell me they have read my articles on The Spinoff on being Autistic. They corroborate with the notes of my previous psychiatrist and psychologist – they talk to my Mum, and they ask what my wife thinks. I am ‘officially’ Autistic.

Here’s the presentation I gave – click to view it:

It should not be this hard. I nearly died trying to find out. There’s still not really any support for me that is suitable. So I am working to advocate for better care – I am doing everything I can to improve the lives of Autistic people and challenge the science around Autism.

It’s important to know you are Autistic – but this is not a good way to find out.

If medication works for you to manage other co-occurring stuff that’s awesome – please keep doing that. I just had extremely negative experiences and not all of it is anyone’s fault.

My life has been made awful by people’s good intentions, and they were working with the best data they had been given – it’s just a bankrupt system for so many.

Published by roryreckons

I am an ADHD/Autism/OCD advocate and independent ADHD/Autism researcher. I am training in 2021 to become an ICF Accredited ADHD coach. I write mainly about ADHD/Autism/OCD/Mental health issues, but will also discuss morality, abolition, and current affairs occasionally.

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