Autism: After Diagnosis

I was waiting for a diagnosis of autism for so long (over a year) that I never gave any thought to what would happen afterwards. In typically autistic fashion, I had my eyes so fixated on what was directly in front of me that I forgot to give proper consideration to what might come next. Now it's 'the morning after' and it's time to take the next steps. So what's this critical step in the process like? If you're waiting for diagnosis, what might be waiting for you? What might someone important to you be experiencing after diagnosis?


What's the Big Deal?

That was my first reaction, really. I already identified with autism spectrum so completely that when I received the diagnosis I experienced a kind of anti-climax. Yes, it was a relief that it was actually autism, to get a precise diagnosis of where I am on the spectrum, and to have some ideas about how to manage it better presented to me, along with a list of resources. However, I also had a feeling of 'what's the big deal?' because the diagnosis, at least in terms of being on the spectrum, was exactly what I expected. After such a long wait, maybe a sense of anti-climax was exactly what I should experience.

So things returned to normal pretty quickly, or so I thought.


Denial of autism is impossible

Denial of autism is impossible


It's taken me time to acclimatise to the diagnosis. Reading my psychology report was a big part of that. Yes, it was vital because it laid out different techniques and resources, but it also presented my strengths and weaknesses in autism. To read details of your own psychology is a strange experience, partly because there's no escaping it. It's laid out in front of you in black and white. Nothing had changed in me from the minute before I received the diagnosis to the minute after I received it, but it initiated a mini-collapse. I like being social, so long as the high sensitivity is in a good place, so to read that it may always be difficult for me, requiring me to manage my expectations, was hard.

Rather than being able to engage with the suggestions and resources in the report, I found that it forced me away from them. The negatives that I read in the report affected me so strongly that I forgot the positives, and couldn't approach it in a healthy way. I made 2 social mistakes that also affected me in a strongly negative way and became anti-social. Then, 3 weeks ago, I ate something I disagreed with, or had a stomach bug of some description. I was violently ill for hour after hour. Yet I emerged from it with a positive frame of mind. It was as if the negativity was a poison within me that was expelled when I was ill. I've emerged feeling positive, with a healthier state of mind in general. Yes, I still struggle to have mercy for myself when I'm having a bad day or when I make mistakes, but in some strange indefinable way I felt like something has changed.


Painful Engagement

Slowly, I began to reread the psychology report and think about autism in a more positive way. I'm more open about it being something positive that gives me different skills, abilities, perspectives, and approaches to people who aren't on the spectrum. I've started to become more open about how it affects me to people I'm in regular contact with.

That sounds positive, but it hasn't been a smooth ride. In my first post about autism, Alone in a Crowd, I described engaging with the psychology report and autism in general as 'a nettle I'm going to grasp'. The consequences of doing so has been painful. Last Tuesday I began dissecting the report in some detail and had to stop after making just 1 page of notes. It was painful to confront and strongly affected my mood. The next day I was low the entire day. At the end of Wednesday I found that a particularly silly game I own was helpful in lightening my mood, so that's something I'm going to remember for hard days ahead.


The broad sunlight uplands of accepting autism

The broad sunlight uplands of accepting autism

Broad Sunlight Uplands

Despite that initial pain, I'm finding that engaging with autism, where I am on the spectrum, and what it'll mean for me over the rest of my life, is getting a little better. I know it's not going to be a smooth journey, nor will it be a straight line upwards. A week ago though, even writing this would have been unimaginable.

Something else that's shifted within me is that I feel like I'm settling into my flat more. I've been living here for a year, but it's as if I've been present, not resident. When a friend had to leave the country, she left some things behind for me to look after, or have. I'd never quite been able to engage with that, so 2 beautiful prints have been sitting in their envelopes for almost a year. Now they're up on my walls after I framed them myself. A stereo was in its box. Now it's out on my table. Her box of teas has been opened and now I sit with a pot of tea most nights to drink while I write. These might seem like small things to you, but they represent a greater level of ease, hopefully with myself. I think it's also a realisation that it's ok for me to need a few things after selling so much on Ebay. It's an acceptance of needing to feel a certain level of comfort in my life.


The Beginning

I think I went into the diagnosis process seeing it as the end of the journey, understandable given that I'd waited for over a year to be diagnosed, and haven't been diagnosed until well into adulthood. This is just the beginning though, the beginning of understanding what autism is, how if affects me, how I can channel its blessings, and how I can manage its curses.

If you recognise any of what I've described in yourself, or in someone you care for, I want you to know it's all normal. Autism is always there and it's easy to feel like it's a trap, always waiting to catch you, but that's a negative way of looking at it. Without possessing the pseudo-magical traits that popular media is so fond of attributing to us, we often possess levels of sensitivity that enable us to enjoy art in ways that people who aren't highly sensitive can't. We have different approaches to problems and creativity, so enjoy them! Enjoy it all! We'll always have bad days, so enjoy the great days and take every opportunity to open the doors to more.

If you or someone you care about has been through this process, I hope you'll leave a comment.