15 months, Half a Century

6 min read

I waited 15 months for my final autism assessment. Really, it was three years, because I waited for about a year before I told anyone what I suspected, and then there was another few months before I worked up the nerve to go to the doctors to ask for a referral.

The length of this wait really sheds light on how many autistic adults are seeking diagnosis and support, and how important it is for better funding and coordination for adult services.

On that day, it had snowed, and when I turned up at the train station, I was told that the trains weren’t running because of signal failure– yet another example of government failure to fund services like public transport that many of us rely on accessing.

I couldnt get an assesment in Manchester and had to travel to the next city. I had planned my journey meticulously so I would arrive at the station a good half hour before the train was due and then arrive in Sheffield an hour before my appointment.

Now, I would have to drive in the snow through the Peak District National Park. Over the Peaks. In my little 12-year-old car. In the snow.

I should have seen this coming. It was like the final level in a computer game– the ultimate almost-unplayable challenge that you have to Google the cheats for.

I crept over the hills and mountains slowly, just about keeping it together. Finally arriving, I went to a café to wait and then as I was about to go in I spilt coffee all over my lap– meaning just as I was about to be assessed by a psychiatrist, I looked like I’d wet myself.

This is what all 15 months of anticipation had built up to. I had been through so much to get here– much of which I can’t legally talk about. I had to do so many things that I absolutely hated, like open up to so many strangers about the most personal feelings and thoughts, open up to my family and co-workers.

This wasn’t just like saying you had a broken toe or a swollen ankle or something you could point to, this was your inner workings and how you related to the rest of the world. Almost everyone who knew me didn’t think I was autistic and were just waiting to be proven right– but what would it mean if I were wrong?

And all the time, there was the inner voice telling me I was wrong. That doubt that followed me everywhere like the tail on a dog. Imposter syndrome.

In fact, probaby the only person truly convinced I was autistic was my brilliant counsellor. They were autistic themselves and after only two sessions had said they said they were 100% sure I was and were happy to put it in writing. Without their help, think I might have given up.

I’d already been through the first part of the assessment two months earlier. It had gone terribly and had left me devastated, particularly when I was told I needed to wait another 2 months for the final part.

When I think of walking out of the clinic that day, the image I get is of falling, of huge cliffs spiralling past my eyes, of being drained of every ounce of fight. I don’t know how I got home that day or survived the next two months.

Like so many times in my life, I wish I could go back to the “then me” and tell them everything will be alright.

So here I was at my final assessment. The psychiatrist came out, took me into a room, and said, “I’ve read everything you’ve sent, and the notes from your first appointment, and I’m already 99.9% sure you’re autistic; but, we should do the assessment anyway.”

And that was it.

All that struggle was over. Three hours later, I walked out with my diagnosis.

It feels wrong to use neurotypical labels for emotions. What is the scope of a word like happy? Where does it start and end? It is so subjective that it is utterly without value as a unit of shared understanding.

Also, as an autistic person, to use NT labels feels like a fish trying to describe its life in the ocean with the language of a baboon. It seems to make more sense to record what physically happened with an intensity grading out of ten (10 is highest): “shouting, swearing, no blisters/ 5,” “crying, blisters / 7,” “laughing, no blisters/5,” etc.

The blisters are caused by hand rubbing. If I have an emotion, I rub my hands together. Regardless of whether my feelings are positive or negative, I am compelled to rub my hands together. I do it before I realise I’m doing it, and the only difference between positive or negative is how hard I do it. In fact, my hands are more expressive of my emotional state than my face.

When I’m overwhelmed by being autistic in an NT world, I rub my hands so hard I carve raw open blisters that make it almost impossible to close my hands, and at present, I think I’ve pulled a muscle in my chest from rubbing them together so violently.

When I came out of the clinic and began the drive home, I was overwhelmed with feelings: “crying, face hurt, laughing, stomach darkness, feeling of falling no blisters /10.”

Whenever I think of those feelings, I instantly get the image of a mile-long, amorphous fatberg with tiny little people in hazmat suits swarming over it trying to chip bits off.

That was the last day of February 2020. Three weeks later, we were in lockdown. Since then, I have left the diagnosis sat on the drive because it is still too large to get in the house.

Everything has changed, every second of my almost-50 years on the planet has changed. It’s like turning a corner and suddenly being able to see the world– past and present– in five dimensions. Every memory has to be examined over and over again from these new angles.

Or going to see your favourite film to find they’ve changed the soundtrack and ending.

I keep trying different metaphors, but none really work.

Some of being autistic makes me laugh, no blisters /5, like not picking up on the verbal clickbait that NTs scatter to try to engage you in during conversation. For example, a medical professional I had known for 10 years and was friendly with said: “It won’t be me you see next time, because I won’t be here.” I realised hours later that there was pause where I was supposed to ask, “Oh, really? Why ?” Instead, I said, “Alright,” shrugged cheerfully, and walked off.

But other times, it is the sense of being partially buried, my version of being on permanent, solo lockdown. It’s the experience of never being able to describe what I’m thinking adequately, taking hours to think of a response to a question or comment I had not prepared for, and consequently being talked to as if I were a child.

I am far from a genius, but most people assume I am far less intelligent than I am because I cannot find the right word, cannot respond fast enough, and can seem verbally aggressive because I am struggling to externalise my thoughts.

I second guess everything I try to say… Do I really feel this? After a lifetime of being told what I feel is wrong, it is hard to be sure what I actually do feel.

Also, I am sure I have just read all of these ideas expressed exactly like I did and have just written them somewhere before and am just repeating them.

The most difficult realisation was I thought that I had successfully masked all of this, but I’ve come to accept that throughout my life, this wasn’t the case. Everyone knew there was something different, which left me furious that nobody told me and even tried to dissuade me from finding the reason.

At the end of all of this, I have realised that the only people autistics can rely on are other autistic people and themselves.

But that’s fine, because that’s enough.

Fifteen months I waited. This is the gestation period of the black rhino– and I feel that this is what this struggle has made me– armour-plated with the defences to take on anything.

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7 Comments

  1. May I ask, is 15 months a normal period of time for an assessment? I was diagnosed in my early 40s, but my assessment lasted about a month. Raphael

    1. Author

      I think its very much a postcode lottery but I don’t think that 15 months is unusual — ive heard some places its 2 years

  2. I was just diagnosed at 25. I can relate with so much of what you’ve described here: reprocessing all of my life’s traumas with new eyes, struggling to respond to questions I haven’t prepared for, doubting my every thought and emotion.

    Congratulations on your diagnosis, and thank you for sharing your experiences; once again I’m reminded that I’m not alone.

    1. Author

      Thankyou so much and really glad you liked it 👍🏾

  3. Wow I can relate, I got my diagnosis 1 week before lockdown, at 45yrs old and it’s still sitting in the drive too, I haven’t even told anyone, but I just did 🙂

  4. Thank you for putting this into words — I too was diagnosed in the UK in February (age 48) and because of lockdown I have ‘parked’ it in the back of my mind and carried on as before. I had my post-diagnostic session cancelled so I have had no support or follow up info of any kind, not even a paltry leaflet! I’ve just been left to cope with this, and lockdown, on my own. I’m dreading the time when the crisis is receding and I might have headspace to process my diagnosis. Have a feeling it might hit me like a bus!

  5. I’m 60. I was scheduled to have my diagnosis on April 6. It didn’t happen, due to lockdown. I might seek an online diagnosis from the folks at Embrace ASD. I’m also feeling pretty OK with my self-diagnosis. I really appreciate what you share, and I especially appreciate what you say about NT words for feelings. Your scale makes sense.

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