Diagnosis, Rain and Tractors

Why now? What brought me to diagnosis in my thirties?

It began with a random article. It was about the under-diagnosis of autistic women. I had no particular reason to read that particular article. It just sounding interesting. It was just there.

As I read, a tingly feeling started in the back of my neck. It spread up my jaw and slid up my skull. I remember stillness. I was motionless. I stopped hearing the world.

The person in the article was me.

My nose ached as though I wanted to cry. I don’t cry often. It’s not my thing. I didn’t let it all out. I held it in.

Already my brain was racing. It was working on the problem of me, trying to see if who I was fit into this new frame of “Autism”.

Piece by piece I took me apart, my symptoms, my actions, my motivations. And piece by piece they fit.

I waited for something that didn’t.

Empathy. Empathy was something I had in spades, I’d always thought it was the stumbling block that would preclude that particular brain-type. But it was there too. Not just empathy, but extra empathy.

I found lists and one by one I checked myself off against them.

I found online tests. They gave handy tables of the types of results autistic women gave, what women without autism gave, and what women with a suspicion of autism gave.

I looked at my results.

Not autistic. Barely autistic at all. More normal than a normal person.

Then I slowed myself down and made myself read the results properly. My eyes jump about when I’m anxious, my brain isn’t always processing what I’m looking at, sometimes it lags.

What they really said was Autistic. Very autistic. More autistic than the women with a suspicion of autism. More autistic than the autistic women. More autistic than the autistic men too.

Not that I am “more Autistic” whatever that means, but my traits were higher than I was expecting. I was envisaging something between normal and suspected.

In some ways it felt like a relief. There was excitement. I was on a quest to find out who I was. Maybe I’d get to slay a dragon at the end of it. Maybe this would give me the armour and shield I needed.

It wasn’t a diagnosis. It wasn’t something real. It was just an online test. No one trusts online tests.

I started reading discussions in public chat rooms.

I wasn’t qualified to comment. I just wanted to learn. They were all women. All different. Some parents. Some heterosexual. Some working. Some young. Some intellectual.

All lost in their own ways, all trying to make sense of their recent diagnoses or suspected autism.

I turned off the computer. I talked to my husband. He agreed that the symptoms all fit. Neither of us were sad or regretful. It just was.

I bounced back and forth between needing to know and not wanting to go through the process. It was my husband’s encouragement that finally moved me forwards.

“Do you want to know for sure?” He said.

There was the logic. Yes I did. If I was going to do it I didn’t want a diagnosis that could potentially be argued against down the line. So I made the decision to go through the NHS.

Going in to see my GP I was hit by my first quandary. Who should I be? To cope and protect myself I put on a mask, but I needed her to believe me. She would never believe my mask was autistic. But to take it off at a time when I was already feeling vulnerable would be terrifying.

I’d never done that before.

It was hard. I cried. I struggled to talk. I struggled to make my case.

“I don’t like labels.” She said, “I don’t think we need them. I don’t think they help. I will refer you, if it’s what you really want. But it’s ok to just be an individual.”

She’s a great GP. One of the best. One of those people who knows everything about everything. But she was wrong.

I insisted I wanted to know. She gave me a print out of a leaflet. Asked me to drop in a list of my symptoms that she could attach to the referral, and that was it.

I made the list. Giving examples, and I dropped it into the surgery. It was never passed on.

And then I went back to my life.

At first I waited. Not actively, but somewhere deep inside, there was a sense of anticipation. Slowly this seeped away. I accepted that the referral had been lost. I decided I might try again in the future, but right now it wasn’t meant to be.

I pulled the duvet over my head and hid my disappointment.

And then it arrived. An innocent invitation to an appointment at the local mental health clinic. It had been more than a year since my trip to the GP.

I cannot describe a more depressing, restrictive, unhealthy building. I’d driven past it a hundred times. My husband came with me. He knew how nervous I was. He knew I couldn’t speak to him. He held my hand when I wanted him to and let it go when I didn’t.

It was raining. Proper Welsh rain. The kind that sends rivulets streaming into all your nooks and crannies (especially your crannies).

We were buzzed in to a grey, narrow corridor, I croaked my name through the tiny crack in the safety glass of the reception’s window. I was told to sit.

We sat. In the corridor. Opposite a bulletin board of leaflet after leaflet about mental health and support and violence and all aspects of people’s pain.

I shrugged off a comforting hand. It felt prickly and uncomfortable. I was now safely in the realms of overload.

“I’m not ill.” I hissed quietly.

“I know you’re not.” He replied.

“We shouldn’t be here, in this place. I’m not ill.”

“I know.”

“Another five minutes in this place and I will be though.”

We laughed. One of those strained laughs that unites you against the world.

I told him he should get back to work. It was his lunch break. He said he was staying. He’d be here when I came out. It helped. Knowing he would be there, my one piece of safety and normality in that cold madness.

They were running late and I was running early. I always run early. It’s who I am.

Finally the specialist practitioner came to find me.

I liked her. She made a joke about not shaking hands and then apologised for mentioning the weather.

It was the first time in my life that a stranger had tried to adjust their customary greetings to fit with what I might prefer.

I followed her down the maze-like passageways. I focused on her. I let everything else go by in a blur. I couldn’t process it. I didn’t want to.

She apologised for the room. It was empty, the paint was peeling off the wall. There was a high window opposite the door. Inescapable. Unclimbable. A glimpse of fluttering leaves and waving branches from the safety of my box. We sat in chairs that belonged in a school staff room.

There followed several hours of recounting my life history. At times I cried. I was often asked if I wanted to stop. I didn’t. Stopping meant coming back and doing this again another time.

Then we went through what a diagnosis might mean. The dangers of it. The fear people have of labels. What negative effect it may have on me.

And the opposite. How would I cope if I went through all this and was told that I wasn’t?

I was asked if I wanted to continue. I said I needed to know. I needed to understand myself.

It was at that point that something in her conversational tone changed. She started talking about online support groups for aspies. She started talking like I was right.

She was happy to refer me on to the Psychiatrist. She would diagnose me using the DISCO technique. It basically involves a long list of open questions which are then analysed.

I asked how long the wait might be.

“Hopefully not more than three months.”

I staggered out. Very grateful that my husband was there to get me out again. I was utterly drained but also exultant. I told him what had happened in snatches as it occurred to me. Words then silence then more words and more silence.

And then I went back to my life again.

The letter came. Two months. Same place.

It’s always easier going to a place the second time. I don’t have to note where everything is, and familiarise myself with every pointless feature. It takes less processing.

We laughed in the waiting room. Made black jokes and mocked the cruelty of a broken coffee machine that dominated the space.

Back to the same room with a new face. And there it was. Confirmation. Validation. Elation.

This isn’t a story about the diagnostic process. This is a story of me getting my diagnosis.

The emotional sequel to this is Here: Grieving for Autism, but these are the moments I remember of the process.

All I have from it is a printout of someone’s idea of who I am and how that relates to how I think. It tells me I don’t project emotions fully. I wish I knew how I was getting it wrong.

All I have is that label that I clutch tightly. It’s mine. It’s not for anyone else. Just me.

Those words changed my world. They made sense of everything.

Using my latest clumsy analogy, it’s like all my life I thought I was a Fiat Panda. I had the manual. I followed it as best I could.

But when I went for the stated top speed, I overheated before I got anywhere near it. Nothing was where the instructions said it should be. I was far better off-road than on-road. Off-road I left the Fiat standing.

Then someone handed me a Tractor Manual. Suddenly it all made sense. My complicated hydraulic system. My lack of seating. The noise.

It’s not my most elegant analogy but it’s accurate. And as lovely as Fiats are, I’d still choose to be a tractor every time.

Published by Rhi

27 thoughts on “Diagnosis, Rain and Tractors”

  1. Tractors makes the world go round, where us Fiats are spinning and quite useless the tractor steps in and get us up on the road again and finish the job! Tractors rocks!

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  2. I was so lucky, I read an article, had my “what the hell – that’s me – why have I never heard of this?” moment and had a Skype appointment with Sarah Hendrickx within three weeks! To go from clueless to ohhhh aged 43 was quite a rush!

    And, to badly mis-quote you from two of your fantastic posts, we are not faulty fiats we are phenomenal tractors! How amazing to finally realise that 🙂

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    1. Amazing. Quite the rollercoaster. You’re the hare to my tortoise… Although no one lost the race so the analogy falls down there 😄

      Phenomenal tractors all the way!

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  6. I did mean to add, I find it really reassuring that people are making or have made the same journey as I feel I am on. My process of self diagnosis came from reading an article – Sarah Hendrickx’s in Standard Issue a few months ago, actually. It was the obsessions and special interests that I recognised, especially as at the time I was getting really frustrated with myself for concentrating on mine at the expense of my actual paid work. I read about her mad plans and the B&B in Morecambe and it really chimed. Although I still sometimes think to myself *a B&B in Morecambe???* 🙂 I was having a few moments of self doubt about the whole thing recently, thinking, really, for goodness sake, does reading an article when you’re 39 actually lead to such an enormous revelation? Really? But this blog entry and the comments does reassure me. So, thanks.

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  7. Hi Rhi,
    I apologise in advance if my comment might turn too long, but it’s quite the first public acknowledgement of myself, the real one…
    I came across one of your previous posts in the Diverse section of my Reader.
    Like times and again since I started to understand myself about a couple of months ago, my heart froze between your lines, as I saw myself in most of what you wrote.
    I just turned 53, and believe it or not, I work in Mental Health, studying towards my first degree. I came across a wide spectrum of mental health conditions, but somehow just started reading more in depth about ASD, Asperger’s…
    When I stumbled upon a site providing an AQ 50 test, I reluctantly took it, as it seemed to be just about myself, but as the “me” who’s learned “to behave” as expected all along my weird life. The result came as over borderline, which was quite of a shock. I didn’t know what to do with it; to laugh, to cry, to throw my laptop in the bin, etc.
    But the real shock came after I took the test again, honest now, as honest as I always wanted to be with all questions. This time I scored 47 out of 50…
    Denial, relief, all together in the light and shadow of what I’ve gone through as a child, teen, adult until now. As I started to read everything I could, it became obvious that I was actually living some sort of chameleonic existence, struggling to adapt in order to protect that little bit of me still deep, somewhere within, the little boy with a biggish head, reading the same book(s) for the 25th time in a row, watching some movies again and again because for me they were just endless sequences of infinite details, or listening music just to catch a different shade of the same sound at different volumes, or writing classic poetry while in elementary school, as rhyme organised itself in thoughts and lines of rhythm…
    All this while all other children were playing outside. And when I was finally sent to play “like all children do”, I got lost when they took me on just the other side of the block of flats I grew up in, because the entrance was different than what I used before. Oh, and climbing up on trees, without being able to climb down because I forgot the pattern of going up…
    And the soothing ordering of my beloved stationaries, and tools and books, and shoes, and socks and all the objects of this world I ever came across.
    My “saddest” memory of growing up was the first funeral I participated to, where to my confusion, I didn’t “feel” anything, besides the acknowledgement of my friend’s non-existence.
    Of course, becoming older didn’t change much, I still get lost in a building I work for two years now, and I need to be told what NOT to do out of the precise list of details I follow after I’m given a task, which I cannot conceive being done other than EXACTLY as told.
    And coping with sounds and noise, oh dear…
    To cut my autobiography short, I went to my GP with a folder containing a well organised portfolio of who I am, and why I thought of needing to be referred to an ASD diagnostic service. The man was truly kind, and around half my list said that I don’t need to continue, and that he truly feels for what I had to go through so far.
    He said it won’t be an easy ride getting through the NHS, but I hope that at least I would finally be able to live my own life, not someone else’s…
    I have mixed feelings, being overly anxious of the screening process.
    Thank you so much for sharing your life with those who like myself, might go through what you’ve gone already.
    This way, even in my usual “loneliness”, I don’t feel alone anymore…
    Would you mind if I’d reblog some of your posts from time to time?
    Thank you for taking the time read my comment.
    All the best,
    Moshe

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    1. Moshe, I don’t know what to say. I am so touched that you shared all that with me. The description of books, films, poetry… You could be describing me.

      Please do reblog what you find useful.

      When I first started this blog I wondered if anyone would even read it. Then I wondered if people would care. Then I wondered if people would be horrible about it.

      I decided to do it anyway. Why? Because it would have helped me. Because reading experiences, genuine experiences, tells you the truth of the process. And if there’s one thing I hate, it’s euphemisms or people trying to make things sound worse or better than they are.

      I only ever speak for me. I only ever recount my experience.

      But I have been so completely overwhelmed with how not alone I am. I reach out and I get comments like this back, and we are not alone.

      Good luck with the process. I hope it goes smoothly for you. I found the first step was definitely the hardest. But there are no guarantees.

      And thank you again. I very much enjoyed reading your comment.

      Rhi

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  8. Thanks ever so much, Rhi!
    It makes a real difference being able to talk about something I didn’t even know I should be bothered about, a couple of months ago. I actually have to learn thinking and talking about it, as everything sounds so unfamiliar still, even if with every word another memory and/or question becomes personal, almost overwhelmingly. Suddenly I realise and understand the “muse” behind my writings…
    I’ll be following your blog and share what goes through my increasingly interesting mind 🙂
    Thank you so much for allowing me to re-blog, I’ll start with it right now.
    Moshe

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  9. Yet another ‘Yes, that’s me!’ moment. I’m a tractor too 🙂 A happy old clunky rusty John Deere that keeps on going regardless. Still getting all the pages for my manual but what I have already makes more sense than the entire Fiat one! I’m so grateful for the amazing blogs people write, they’ve helped so much to quell the feeling that I’m somehow ‘doing it wrong’ or failing for struggling with what on the surface seem like simple things. They’re not. I have a talent for making simple things complex and complex things simple. Sometimes useful, often not. I am overjoyed to feel for the first time that I know there are people out there who understand. We’re not all the same , we each have our challenges and strengths I know, but we also have much in common. I’ve learned a lot from this wise & funny community. Thanks!

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    1. Hurray for tractors!

      Thanks so much for this. I needed it today 🙂 there are many of us who understand, who are all in this together.

      Tractors are great.

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