Hello, and welcome back to The Autistic Writer. I hope you’re all well. I’ve had another mixed week, marred by the disappointment of not getting the flat I wanted, and by having to attend more medical appointments than I would have liked (one is too many), only to find I need further tests. There’s not a huge amount to say about that situation until I get some results, so let’s talk about autism stuff. As is often the case when I get some downtime, I reflect on how my life has changed since finding out I’m autistic. It must be quite difficult for people who have known me for a long time to get their heads around this change. In some ways, I made it difficult for them. You see, in the decades before I knew I was autistic, I worked incredibly hard to fit into various social groups and online communities, and to cultivate personas that gave me the best chance of getting the interactions I thought I wanted. I didn’t know that this effort, and the many failures and meltdowns it led to, was an accelerant for burnout. I had been smouldering ever since childhood; knowing at some level that I was different to everyone around me, but my efforts to fight back against the sense of alienation I felt were counterproductive. To reference David Bowie, I was putting out the fire with gasoline…
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In 2018, during the time I was on the waiting list for my autism assessment, I gathered enough information to be able to self-diagnose, but that information came from all the wrong sources, and was based on the medical paradigm of autism. As a result, I assumed that if it turned out I really did “have autism”, it meant that there was something wrong with me. This was obviously and atrociously wrong, but it’s alarming in retrospect how my flawed assumption was challenged by none of the people I confided in. No one I knew, I now see, had any appropriate understanding of autism to be able to steer me in the right direction. Don’t get me wrong; I’m not blaming the people around me for anything – if you don’t know something, then you don’t know it. My observation is simply a recognition of how little of the truth about autism gets through to most people. The lack of understanding from the people around me manifested in various ways, and today I’m going to talk about two of those instances…
Back to 2018. At this time, my mental health was in steep decline. I was approaching the climax of my autistic burnout, which would leave me a shell for a good six months, and from which I would never fully recover. I remember having a conversation with someone about the possibility I was autistic. This guy pointed out that if it turned out I was autistic, then it wouldn’t change anything, because I would have been autistic my whole life; it wasn’t as if I was suddenly becoming autistic: The diagnosis wouldn’t actually change anything at all. At the time, that seemed to make sense. But it was wrong. Really, really wrong. There is a cataclysmic shift of self from not knowing you are autistic, to finding out you are autistic. It was like coming out of the Matrix…
Once I knew I was autistic, I was able to apply the correct context to my life, and the results were astounding. The recognition that the personas I had created were not really me was deeply disturbing, but undeniably true. The new knowledge of the mechanism driving my relationship troubles; the double empathy issue between autistic me and my neurotypical peers, rocked my world. After an initial period of burying my head in the sand, I accepted myself as an autistic person, and understood that being autistic does not mean I am broken or faulty; I am just a little different from the crowd. The only way in which I am broken is from the burnout that resulted from so many years of trying to pass as neurotypical. But the gasoline has been cut off now, and the fire has been put out, although the embers still occasionally smoulder.
The process of learning I was autistic changed me fundamentally as a human being. The change resides not only in how I see myself, but how I see the world. Some time after I found out I was autistic, the realisation that I am disabled dawned on me. I’m going to have a lot more to say on the subject of disability in a future blog, but now is not the time. I will say, however, that my understanding of my disability forced me to confront my own ingrained ableism. This was uncomfortable for me. I had to take a good look at myself, and challenge my attitudes and beliefs. I guess in some ways this is still a work in progress. But I now see ableism everywhere, and I feel a deep sense of moral fury at the world I live in. I’m not remotely like the person I used to be before I recognised I was autistic. And this is something neurotypicals should bear in mind if their loved ones are going through the process of discovering they are autistic: They won’t just carry on being the same person but with a handy new label. The process and the new awareness change you, fundamentally and permanently.
Now let me tell you about another conversation…
Interlude: A brief message
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After my official diagnosis (official as opposed to my partially-informed self-diagnosis), I spouted a lot of crap about myself and autism. Like I said earlier, my information had largely come from the wrong sources, initially. In one conversation over a quiet coffee with someone I’ve known for many years, this person said, “If you’ve got autism, it doesn’t make any difference to what I think of you. I can see past it. You’re still the same Darren to me.” I have no doubt that this person was speaking from a place of genuine affection. But there’s a lot wrong with what was actually said. I don’t blame this person for saying what they said, because they had obviously been inculcated with the misinformation about autism that is constantly repeated in our culture; that autism is bad, that autistic people are broken, flawed, and lesser. But here’s the thing: Not only was I no longer the same Darren (see above), but I didn’t want people to see past my autism. In fact, you cannot see past my autism; it’s impossible. As I often say, I don’t have autism; I am autistic. Every atom of me is autistic. If you try to see past it, then you are seeing past me. You are choosing not to acknowledge me as the person I am; rendering me invisible, and projecting some illusory image of the person you want me to be. People who have known me for a long time will have a hard time reconciling the new autistic me with the personas I had previously created for myself. They might be more comfortable with the old, fake me. But that’s not my problem. I have walked through a cleansing fire, burned away the old me, and re-emerged phoenix-like. If I had not hit burnout; if I had carried on indefinitely in the same old vein, I probably would never have found out I was autistic. The process for me was not planned, and it was traumatic, but it was unavoidable and absolutely necessary. Something else, then, that neurotypicals should be prepared for if they have loved ones who are finding out they are autistic: the changes that will follow are unplanned and inevitable. It will not be helpful to hold onto the memory of the old, pre-diagnosis person, and expect that to continue. To expect a newly-diagnosed or self-diagnosed autistic person to carry on as before is unrealistic, and potentially harmful. We have enough to deal with; we don’t need to carry the burden of your desires and expectations of who you want us to be.
There is a tradition going back to ancient times, in which when a person dies, their body is cremated and the ashes are stored in an urn that has been decorated with images that reflect the deceased person’s life. The person is dead and gone, and what is left behind is a small representation created by the people who survived. If you are a neurotypical person who cannot come to terms with the changes in a loved one who has found out they are autistic, you are in effect trying to reduce that person to ashes so you can keep them contained in the urn of your memories. Don’t do that. Set your autistic loved one free to enter the cleansing fire, and welcome the phoenix.
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All that remains is to remind you that my latest novel, Aberrations, is now available in paperback, and available for pre-order on Kindle. You can find the various international Amazon links to the book below:
United States: https://www.amazon.com/dp/B09RW2W5NK
United Kingdom: https://www.amazon.co.uk/dp/B09RV17LXF
That’s all for this week. Until next time, take care, be good, stay proud.
Why Do I Write This Blog?
When I first found out I was autistic, I was a middle-aged adult and I knew nothing about autism. I quickly learned that there was a serious shortage of information and resources for adults in my situation. With this blog, I aim to inform about autism and autism-related issues as I learn, hopefully helping people who are on a similar journey of discovery. Like anyone who writes a blog, I want to reach as many readers as possible; if you like what I’m doing, please share it with your friends and followers. I will never hide this blog behind a paywall, but running the website does incur costs. If you would like to support, feel free to make a small contribution at BuyMeACoffee.Com.
You might also be interested in David Scothern’s blog, Mortgage Advisor on FIRE, which covers a range of topics including mental health issues and financial independence.