I’ve never been very good at “occasions” and I’ve written before about some of my problems with various Special Days and how I deal with them.
A year ago as I type these words I was nearing the end of an assessment appointment that lasted almost five hours total. I’d spent months in a state of high stress, I was still in a state of shock about all that had happened, I’d done almost nothing but research autism and find out what it was and how it might not or not relate to my own life, and I’d sent over 120 pages of evidence and numerous forms and questionnaires to the two people who were now sitting opposite me.
Once the appointment finished the Wonderspouse and I went for a walk round the block as we’d had to on several occasions during the appointment since I was continually getting overloaded and we didn’t want a repeat of the meltdown and self-injury that had occurred during my first failed autism assessment. The main assessor was skilful enough to recognize when my levels of stimming were at the point where I needed a break and breaks had also been planned into the appointment at the start.
When we returned for the last time to the building, it was to hear the verdict of the assessors, which, as I reported in An Announcement, was that it was absolutely clear that I was autistic. It became obvious from the two follow-up appointments that my test scores, my interactions, my behaviour, my speech, and (completely unknown to me previously, but obvious to someone who knew what they were looking for) my facial expressions and gestures were all well within the criteria for an autism diagnosis.
The initial feeling was overwhelming relief. The quest for a diagnosis was over. I could stop now. The assessor asked me how I felt, I said I felt relieved. I was told this was a very common reaction to diagnosis, particularly late diagnosis.
I then wanted to check that that was actually it, the point of diagnosis. That day. That I wouldn’t have to wait for a letter or anything before it was official. Was I officially autistic straight away or did becoming officially autistic only start once the paperwork was sorted? I was assured that my diagnosis was effective immediately. I made them tell the Wonderspouse again just in case my brain was playing weird tricks on me and I woke up and asked if it had all been a weird dream.
Then I expressed considerable pleasure at the date. 20th February, 20-02. Zeroes, even numbers, THE only even prime number, and wonderful wonderful symmetry. Had it been in 2002 (the year we got married) it would have been even more perfect, but 20-02 on its own gives my head little happy tingles, like mini stimmy stars sparkling in a bit of my brain, so I was happy with that. I rhapsodised for a few moments about the date. The assessors laughed.
It was then decided that I was exhausted and it was time to go home. I hugged both assessors, probably too hard since that is my tendency. Having since learnt about sensory avoiding autistics who dislike hugs as distinct from sensory seeking ones (like me) who probably like them rather more than most, I now wonder what proportions of various reactions autism assessors get at such moments!
We departed and went for another short walk to calm down before driving home. We also called at a supermarket to get me a calorific drink because I’d hardly had anything to eat so it was a good idea to get some nutrition in me before I drove us home. I also bought a bottle of Oyster Bay Sauvignon Blanc, which I’d drunk with my best mate a few weeks earlier. He’d told me to get myself a bottle to celebrate or drown my sorrows as appropriate after my assessment. So I did.
And all that was a year ago.
The first anniversary of my diagnosis has been looming for a few weeks now. I’ve pondered what I should do about it. I’m rubbish with anniversaries. I’m rubbish with birthdays. I’m rubbish with all that sort of thing.
I thought I should probably have a cake or something. I should bake a wonderful crazy cake and decorate it with gold icing and rainbow infinity pieces made out of food colouring and magic, with a single candle in the middle, and the date, and a whole load of autistic pride type flourishes. Then I remembered that I can’t bake. And I’m not really eating much sweet food at the moment. And the Wonderspouse has a very limited desire for cake. And even 37 rats (our current number) would struggle to get through such a cake and I’m not actually in the business of making the rats ill by feeding them on nothing but sugar for a week. So no cake.
No party either. We almost never have people round to the flat. There is no space. Other people in the flat make the Wonderspouse so unbearably anxious that if anyone does come round (happens about once every two years) he simply goes out. And there’s nowhere for anyone to sit either, not even floor space. It’s crowded enough with two of us.
And so I find myself in the weird situation of today, which is a really big important day for me, with no way to celebrate it. I’ll be on my own until late tonight because the Wonderspouse is at a course. I’m struggling with eating again at the moment, so food beyond the normal isn’t really a thing. I do have a nice bath bomb for a bath later – one with a lovely smell and stimmy sparkles that I can swish around and watch until the water goes cold.
I’ve also made myself return to this blog. I know I’m not here much at the moment. The pause is still intended to be temporary, but I’m finding words harder to write at the moment and I’m also using energy to try to rebuild some sort of offline life that will maybe eventually make me feel that it’s worth hanging around on the planet a little longer. I’ve returned as seriously as I can to running, which is taking a huge chunk of my energy – coping with the sensory demands of being outdoors for long spells is really sapping my strength. I’ve also started to say “yes” to a few more music gigs. And there are other ordinary life issues to deal with – trying to sort out a hacked credit card when I’m unable to speak to the bank on the telephone is proving extremely challenging, we’ve had problems with our internet connection, and I’m using huge amounts of energy to communicate with the garage in an attempt to sort the work needed to get my elderly car through its MOT.
Furthermore, I’m still trying to get the correct dose sorted for my ADHD medication. It’s not clear what that will be yet. I’m also somewhat low and constantly trying not to tip over into a depressive episode. And I’m also learning. The autistic world turns out to be a complicated place, with many many different experiences, and I need to watch for a bit, and learn, and read.
Ironically, a year on from diagnosis, I’m now significantly much LESS confident about writing here. I need more time, more space. My head is not in a very good place at the moment in very many ways. Trying to do all that I’m now doing is also leading to more meltdowns, more shutdowns, and less functionality. I don’t know what more I can do other than wait.
So it’s a really big significant day. And, as with all such days, I feel a pressure to celebrate, but I don’t know how, and I really just want it to be a normal day, which it basically is. Maybe I’m simply still not yet recovered enough for such things. I still need more time, more space. Two years ago I barely knew what autism was. I certainly had not the first clue that I was autistic. One year ago today I was formally diagnosed autistic. These are short timescales. I’m still processing.
I do have a bottle of Oyster Bay Sauvignon Blanc in the fridge for later though.