What's the use of a diagnosis?

"What are you going to do with it?" asked a friend of mine when I told him about my autism diagnosis. It seemed an odd question. What does anyone do with a diagnosis of a lifelong incurable disability?

In truth, I don't know what I'm going to "do with it." 

I originally thought it might help me find and, importantly, hold on to stable employment. But on reflection, I'm not sure it will. In fact it might make it considerably more difficult. I already had two characteristics that tend to put off prospective employers, namely my gender and my age, and I have now added a significant disability. Of course, the law nominally protects me from discrimination on all of these grounds: but there is a vast gulf between the law and reality. I discovered after my diagnosis that only about 20% of autistic people are in employment. The rest are either precariously self-employed, like me, or living on benefits. What a tragic waste. 

But although I do need a stable well-paid job (more on this shortly), that wasn't why I got the diagnosis. I asked for a diagnosis because I needed to know. Many people self-diagnose, not least because NHS waiting lists for adults are years long and private diagnoses are costly. But for me, self-diagnosis was not enough. I needed a formal diagnosis to quell my own self-doubt - to silence the critical voice inside my head that insists there's nothing wrong with me and I'm just being dramatic. I do my best to ignore this voice, but at times it is very, very loud. I thought that if I could wave a formal diagnosis backed up by a detailed report, it would shut up. How wrong I was. 

"Everyone is a little bit autistic," said my friend. I felt as if he had torn up the report and scattered the pieces on the floor. "See, you're making it up," shouted the voice in my head. 

I know my friend is wrong. Research shows that there are significant differences between autistic brains and neurotypical brains. But my assessment did not include brain scans. It was done purely on the basis of self-reported and observed behaviour. The report says that my self-reported behaviour is "clinically significant", suggesting autism, on almost all criteria, and my observed behaviour, on a clinical severity scale, indicated "moderate autism", though it does not explain what this means (I have asked for an explanation). But I do not know whether my brain is actually different from that of neurotypical people. So although I know my friend is wrong, his words cast doubt - again - on the reality of my autism. 

Why did I tell people about my autism? I could have kept quiet, or just told a few close friends. But I seem to need validation from other people. I need to be believed, because otherwise I won't believe myself. The trouble is that, as I have discovered, there's no guarantee that people will believe me, even with a formal diagnosis. I now realise I should have been a lot more careful about whom I told. 

It's astonishing how many people will cheerfully gaslight someone with late-diagnosed autism. They wouldn't question a diagnosis of, say, a congenital heart condition. Nor would they say "everyone has a little bit of a congenital heart condition". But they apparently feel it is perfectly ok to tell someone they aren't really autistic, or that "everyone is a little bit autistic". 

Anyway, I'm not "a little bit" autistic. I'm significantly autistic and I also have ADHD. Perhaps surprisingly, I'm not angry that this wasn't discovered earlier. In fact I'm rather pleased with myself. A child diagnosed with moderate autism and ADHD now would be given substantial support, and an adult would be able to request reasonable adjustments to help them cope in the workplace and would be protected from discrimination and harassment. I have had no support, no adjustments and no protection. Instead, I have been bullied, punished and driven out of work. But I have survived. That's something to celebrate. 

To my surprise, the immediate effect of having a formal diagnosis was to give me permission to feel exhausted. I hadn't realised how tired I was... I had been doing less and less freelance writing, because I found it draining. However, it had become my main source of income, so I was reluctant to give it up. But it left me with no energy to write my own blog, or do any singing, or even read a book. And the thought of pitching ideas made me feel sick. So when my freelance work evaporated completely in April, it was something of a relief. But ever since, the voice inside my head has been nagging me to get a job. So the diagnosis has already been helpful. Taking on a new job when I'm still utterly exhausted from the last one is a very bad idea. 

I will have to find a job at some point, because my savings aren't limitless and although I'm earning some money, it's not enough to live on. But it's not urgent. For now, I need to rest, and read, and sing, and do the garden, and write pieces like this, and rediscover the fun of writing finance and economics stuff. And finish writing the book that is now two years overdue because I couldn't find enough energy to complete it. Eventually I expect I will be able to work again - though I doubt if I will ever again do as much freelance writing as I used to. 

Looking back, it's evident that during my adult life, and probably during my childhood and teenage years too (my awful school reports suggest this), I've suffered repeated episodes of autistic burnout. I've written about some of them on this blog - interestingly, I labelled them "Slow burnout" long before I even suspected I was autistic. I usually managed to get myself out of the job or situation that was causing the burnout, and resist finding another job until deteriorating financial circumstances forced me to do so. And I've just unwittingly repeated the same pattern. 

The question is whether, knowing what I now do, I can break the cycle of overwork, exhaustion and burnout. I will need a lot of support - it's not easy to break the habits of a lifetime. I've joined an autistic women's group, and I shall look for other sources of support. Above all, I will need the help of friends: the long-standing, loyal friends who didn't turn a hair when I told them I was autistic, and the new friends I'm sure I will meet as I travel along this strange yet oddly familiar road. 

Related reading:

Slow burnout series (to find these posts, click the "Slow Burnout" label on the sidebar)

Diagnosis