I Am Annoying - Part 1 - a repost

Notes on being diagnosed autistic

This is a reworked and updated post from a couple of years ago (ish) originally posted on my other blog - it’s not there anymore but lots of knitted creatures are; go take a peek.

Dear Refections,

Hello all, this was written a good while ago, but I feel the journey I underwent is worth revisiting.

Photo by Bernd 📷 Dittrich on Unsplash

Warning, this ends up a bit long as I processed as I wrote.

A while ago I had an assessment, after a previous assessment, but before a possible proper assessment, to see if I needed an assessment for autism. Confused? I was!

Background: before we moved, when I lived in Wales, I was on the wait list for an autism assessment. I had filled in all the forms, had an initial assessment and been accepted onto the wait list for a full assessment. I waited, and waited, and then we moved. To England. This meant I could no longer access the autism service in Wales and had to transfer to the English system. Whilst I was researching how to do this I got an appointment from the Welsh service for my full assessment. I tried to find a way to be able to attend the appointment but as I already had an English Dr it wasn’t possible, and all my Welsh notes were passed to my English Dr who did a referral for the English system. Following? I have to admit to getting confused myself and was tempted to use some of the money from the sale of our old house to fund a private assessment.

However, life continued whilst I waited, and actually fairly soon I got a letter asking me to come in for an initial assessment to see if I need to be assessed. Fair enough, though I knew all my notes had been passed on by my previous provider. It would be face to face and 45 mins long. That seemed to go fairly well. I felt listened too and respected. I checked they had my forms and notes from before and had read them. So I was slightly surprised that the next stage was to re fill in all the same forms again. I didn’t really understand why I needed to do so, I knew they already had the forms from before. The exact same forms. Much as it was a pain, I quite like forms and started to fill them in. Then reread the letter that came with them and noticed they needed to be back with the office the day before I received them. All the usual inflammatory language that seems to be normal nowadays, “If you don’t return the forms by this date in the past you will be removed from our system for failing to engage with the service.” Cue a panic attack.

Aside: I am so disappointed with both mental health services and autism/ADHD services at the way they talk to their clients. Missed an appointment? Must be miraculously better, and not need mental health services any more, and will be struck off their lists. No thought that maybe, just maybe, lack of attendance could mean someone needs more help not less, especially in the case of depressed people etc. Communicating only by letter sometimes, not text nor email, and each department not talking to the other. Letters can go missing. You cannot attend an appointment you know nothing about. Follow up letters with a text or email. It is not difficult. I spent 3 years fighting the Welsh mental health services on behalf of my adult child and got nowhere.

Eventually, I stop panicking enough to be angry and reach for my phone. I can rarely make phone calls, finding them very anxiety inducing, but anger really helps. I mask up. Once the receptionist finally finds my file - she can’t initially - I explain the situation and how much as I would love to time travel I can’t. She doesn’t find it funny, her loss it was a great joke with reference to Time Lords and everything. I am given another two weeks to complete the forms. I then address the fact they have spelt my name wrong. She tells me they take it from the Drs records so it can’t be. I KNOW it is right on my personal records and get her to check. Reluctantly she does so and yep, my personal records are right and theirs are wrong. She jokes that ‘they didn’t do very well with that one letter did they?’. My reply ‘No, not really.’ This is an autism service, you would think they would understand the issues that most of their clients have. We need clarity, clear communication. We need to be believed. We don’t need threatening to be removed from the service.

I complete these forms and send them off ASAP. In the self addressed envelope with inadequate postage on - it needed a large letter stamp not a bog standard 2nd class letter stamp. Surprisingly, within a very short space of time, I received a phone call. Now normally I don’t accept unknown numbers but I was expecting a call about solar panels so answered anyway. I was being offered a full assessment appointment for only a couple of weeks later. It would be 3 hours long and I would be diagnosed at the end of it. A letter to confirm would follow. I hung up feeling rather impressed with the speed of the service. I believe even a wry smile and slight eyebrow lift were involved. Cool.

And then the letter arrived. It said the appointment was an assessment to see if they were going to go forwards with the referral, not at all what I was told on the phone. After this assessment a team of people would meet and discuss my case to decided whether or not to proceed with an actually assessment. I was my usual confused, anxious, and slightly annoyed. It took me a week to build up the courage to make another phone call. I was told, yes the assessment was for 3 hours, yes it would be a full assessment appointment and I would be told at the end of it if I was autistic or not. Okay, back to the original plan. The receptionist was a tad curt as I tried to read her what the letter said as she cut me off and repeated what she had said. So suitably reassured? I waited for the day of the appointment.

Oh my.…. Oh my. Here started my written processing of what happened, it is long, it does not necessarily make masses of sense. It is written in a style I was able to use, after a bit of editing, for an official complaint.

Photo by Valeriia Miller on Unsplash

As I settled into my seat, my assessor mentioned that the assessment was not a full assessment, it WAS an assessment for a referral. It would still take 3 hours. But after that they would see if I fitted enough criteria to continue forward. I mentioned that it was very confusing and hard to deal with all the change. He asked what changes, I explained and he brushed it off. 4 changes, there were 4 changes (shades of Picard on Star Trek - if you know you know).

I was so confused as to how the assessment was conducted. I felt the need to understand better whether what I experienced was normal, I didn’t think it was, the more I processed the more I remembered and the more I felt … I felt … wronged.

I found the assessor pleasant enough for a complete stranger, but confusing and quite confrontational. He played devils advocate a lot, though he had to clarify that at times as I got confused as to what he was trying to get me to say and why. I did not understand how the assessment worked or was progressing. I stated I did not understand a few times. I stated it was confusing too. We discussed a lot about politics and religion (about 75% of the time) which are not my special interests (colour genetics in animals - recessive genes, DNA etc, and historical buildings - structure, decoration and appropriate building materials) and I felt I was being asked to justify my position. I also felt I now knew his views as well as he should have known mine. I didn’t understand why this was relevant in an assessment. We talked about climate change, Palestine/Gaza and Israel, Trump and Biden, UBI, religion, faith, politics, colonialism, etc. mainly on his instigation and all the time hearing his views. I very much felt that my morals and values were being questioned, and judged against his views rather than being looked at dispassionately and professionally for autistic traits. Surely I shouldn’t know what his views on my beliefs/morals/values/position were at that time, actually within the assessment, so much so that I felt the need to justify myself?

He asked why I had accepted that I was weird and eclectic as a positive and seemed to think that was a very strange thing to do. It felt like he expected me to be sad and depressed. It felt like he wanted me to have ‘issues’ rather than having come to terms with and liking myself. I was 57, I had learnt, through high masking, how to get along in this world. I live an incredibly insular and cosseted life. I have carved out a life for me that makes me happy and accommodates all my needs, why is that seen as odd or wrong?

When I told him I was hyper-lexic (very early reading and writing) as a child he didn’t know what that meant, and then after I explained and I told him I was also diagnosed dyslexic he didn’t understand how the two could go hand in hand. I had to explain (my speciality as a early years teacher was reading and the teaching thereof) and I felt doubted.

I fully expected to be asked questions, of course, I didn’t expect the session to be so hard. I didn’t expect to end up knowing as much about the assessor’s personal life and views - centric politics, doesn’t like Starmer, but stated he liked Corbyn despite being a centrist; not terribly keen on America, thinks Biden is weak and at least Trump did things; was a bad boy in his youth doing drink, drugs and ‘other stuff’, but has recently met a woman, whom he was keen to tell me he respects, and was ambiguous as to whether he would like her to work after marriage; father died when he was young; family emigrated from Pakistan when asked by the government to work in the mills in the 1800s; found God again after this wild youth and it ‘explained everything’, he hasn’t indulged in sin since, specifically mentioning gluttony (said to a rather overweight woman - was he judging me?); an ex science teacher - who did a PGCE after his degree, taught science for 6 months in Bradford (he did mention the academy’s name but I don’t remember it) before deciding it wasn’t what he’d thought it would be, was too hard and stressful and so he left; he believes Noah, Jesus, etc were prophets i.e. Jesus is not the son of god, prays 5 times a day (telling me the tenets of his faith - why?); believes atheism is a religion (it’s not); he drives an electric car; lives in a Victorian house with period features he would quite like to remove including a bust on a corbel in the entrance hallway of Queen Victoria.

He seemed to find my lack of belief in a god, let alone his one god, very confusing. And he told me a lot about what and why he believed. He talked about his belief as to why some people are lazy and shouldn’t be helped by the government after the age of 18. He found my humanist stance an anathema with also thinking that a lot of people are selfish and unable to think beyond their immediate situation and do the best for the world, brought about by poverty and MSM views. Some of this may have been his devil’s advocate stance, I struggled to understand the difference at times.

To be asked questions on topics that were personal, and for those topics to go on for so long was difficult. Topics I wasn’t particularly comfortable with talking to a stranger about and yet I was in an assessment so felt required to talk and fill the silences. Examples of how I was questioned.

After saying that he believe his god designed in precise detail every single thing on this planets including flies, he then scoffed when I said I believed in evolution. “You can’t possibly believe that this all came from nothing?”

“Why do you say that?”

“Why do you believe that?”

“What makes you say that?”

“How can you think that ….?”

When I said I was a socialist (in the hopes that the label would stop him asking questions), he was very sceptical and kept quizzing me. It was exhausting and I didn’t see the point. I wasn’t interviewing for a PPE degree place.

“Why hasn’t science managed to disprove the existence of god yet?” (This from a former science teacher!)

Not ‘Can you expand on that?’ or ‘Could you explain a bit more?.’ It was almost always, ‘Why?’

My head literally ended up on the desk a few times out of frustration and exhaustion. Was the point of this questioning to get me to that state? 2 days followed of migraine and feeling absolutely awful - ‘do no harm’ certainly wasn’t at the front of his mind.

When I mentioned some trauma that happened in my very early twenties it was as though a light bulb went off in his head, that’s why I had issues. Except that doesn’t explain the previous 20 years, nor the fact that I have come to terms with it all and still have issues. But I fully expected that trauma to be held against me.

At the end of our time he told me I was very intelligent, forthright when talking, but rather annoying with it. Is that a normal thing to be told? That can’t be considered professional, can it?

I expected I would be denied further assessment - my reasoning, I married, am still with my husband after 33 years, I have 3 kids who all survived to adulthood, I held down a few teaching jobs even if I left fairly quickly, I experienced trauma, I asked him a couple of questions and managed to fill the gaps in conversation so am able to function in social situations, I can drive, I have moved multiple times and I’m still alive.

This was been an exhausting process. If you made it this far kudos to you.

So that’s all folks, ta-ra for now, part 2 will follow shortly. Tx

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