I haven’t posted publicly recently because I’m dealing with some difficult thoughts and feelings that I didn’t want to express publicly, or even the semi-publicly of my anonymous blog. And I’m not going to write about those things here either. But I wanted to write about something else.
Since my autism diagnosis a month ago, everything seems different somehow. This seems nonsensical. I struggled to explain it to my rabbi mentor earlier today. I was pretty sure for the last few years that I was on the spectrum. I had been screened and found likely to be on the spectrum. The psychiatrist who assessed me said that it did look like I was on the spectrum. Getting the final diagnosis was in no way a surprise. And yet, I look at things differently since February 9th.
Things that I do or have done in the past take on a new significance. I look back at events from my childhood and adolescence or even more recently and say, “I was autistic when that happened.” Autism is a life-long condition, so obviously I had it at every point in my personal history, but it feels like I’m recognising and internalising it with regard to every bad memory I have. I’m not sure if this is good or bad. Sometimes it seems like a way of forgiving myself. Other times it seems more like a threat, that I was autistic then and now, so I could end up repeating that behaviour.
I find myself wondering if my life will ever get better. If I’ll get a full-time job, and an actual career, rather than a succession of jobs for a year or two. I wonder if I’ll get married and have children, if I could actually cope with those things and commit to them 100% with all my issues (it goes without saying that I don’t believe a person should get married or have a child without being 100% committed to them). If I’ll ever be financially independent. If I’ll ever feel really comfortable and active in a religious community. If life will ever seem like anything other than a prolonged exercise in damage limitation. I know that some people on the spectrum, at the “high functioning” end (if that phrase even means anything), do get these things, but lots of others don’t. The uncertainty is hard to deal with.
Vision of the Night 
I suspect what you’re going through is not uncommon. After my diagnosis, I enjoyed a few months of relief during which I wanted nothing more than to just forgive myself and get on with my life. But then, like you, I kept remembering things from earlier in my life and having to completely re-evaluate myself. I do relate to what you describe as life being “a prolonged exercise in damage limitation” — and I am exhausted from it. It’s been a little over a year since my diagnosis and I wish I could tell you it will get easier. But it’s good you have people you can talk to.
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I’m glad it’s not just me!
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You are still adjusting, and I’m sure that will take a while. You’re seeing everything that you did in the past, and are doing now through a different lens. You also seem to be revising your views of yourself as you understand more about who you are. I hope it won’t be too painful, although these kinds of transformations are certainly difficult and bewildering.
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Thanks, yes, I’m sure it will take a while.
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I think you’re in the process of trying to deal with this diagnosis. You waited SO long to get the diagnosis. Now it’s validation, but I think there’s grieving that may take place. Maybe it’s sort of a feeling like, yes, you have autism–now what? The pause between before you had a diagnosis, and now having a diagnosis that explains all sorts of things in your past. That would throw anyone for a loop.
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I definitely think there will be grieving, although I think I started that over the last couple of years as the diagnosis became more likely. I definitely want to grieve for the life I didn’t have.
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I’m not autistic however am doing a similar “looking back in hindsight” thing with regards to OSDD-1/DID. And my sexual orientation and gender identity.
There is definitely a grieving process about the life you didn’t have, lost potential, years spent struggling and feeling you’re flawed, possibly defective.
“If I had been diagnosed as a child and given appropriate support…” etc.
And also at least for myself, a kind of relief I only discovered things “late”. Because if I had not, I pretty much would have faced abusive “corrections” which would have hurt me more.
I’m not sure what’s the dominant intervention for autism where you live, but in the USA, it’s ABA, which many autistic folks cite as traumatising.
What supports do you wish you were provided when younger? 😊
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It is weird when you look back at your childhood and adolescence in light of a later diagnosis. Like when you read a mystery novel and at the end suddenly it all means something different.
Oh, yeah, definitely grieving all those things.
Hmm, I’m actually not sure what kind of supports, if any, I might have had in reality. I just assume there is something that might have helped — possibly “the grass is greener on the other side of the fence.” Certainly when I was a young child, there were NO supports for someone like me. Until I was 11, the diagnostic manuals said that if you could speak, you were not autistic, end of story. Asperger’s Syndrome (what is now high-functioning autism) was only acknowledged when I was eleven or twelve.
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I had a chat some time back with my landlady C who’s a therapist/teacher for children and teens with autism (both high functioning and severely low functioning) and other neurological conditions. It was a general chat, I didn’t share details of you. She says she sees a lot of depression and anxiety for folks diagnosed late. And that intervention needs to be very child centered with the goal of building communication, emotional regulation skills, abstract thinking, social and life skills, adapting self harming stimming into non harmful ones. Not teaching to mask. She says it all has to taught creatively in a fun manner to generalise the skills and not put the child/teen off learning. She also does a lot of teaching the kids and their parents about privacy, body autonomy, puberty and sex education. And she usually enlists primary caregivers because it has to be reinforced. But no shaming, no comparing, no hitting, no punishing (some Asian parents think inflicting pain is effective, it isn’t.).
A lot of her kids/teens don’t just need her, some need occupational therapy and speech therapy. But then she does mostly see lower functioning ones.
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I’m not surprised she sees a lot of depression and anxiety in the late-diagnosed, it’s pretty difficult to go through life feeling you just don’t fit in. And masking doesn’t work in the long run. Unfortunately, that’s all I really know. 😦
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I hope having the diagnosis means you can access supports you need. Other than work accommodations, hopefully there’s other supports you can get. 😊
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I hope so. I’m supposed to get a report which includes support options, but I haven’t had it yet (typical NHS!).
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I really hope they hurry up with the report, and that it contains helpful support options 😊
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Thanks!
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