Right after you've been diagnosed with autism is a tender and difficult time. I remember clearly how painful it was to read through the report of the diagnostician. Yes, I'd wanted the diagnosis. Yes, I'd suspected that I had autism beforehand. Yes, there were some useful things about the diagnosis that made sense of problems in my life. But also, it was incredibly unmooring to read someone else's view of myself from an outside, clinical, unbiased and objective perspective about things that I had only ever felt from the inside.
I'd always known that I tended to speak rather formally, with precise diction. I always finish sentences and I almost never use colloquial language—or if I do, I do it badly and embarrass myself. I know that some people experience my way of talking as conceited or elevated or intended to make them look bad. But I also had always thought that I was good at communicating. I'd thought one of my best skills was the way I use words, the way I can weave language into something beautiful. The diagnosis didn't seem to see it that way. It was a pathology. I was wrong and always had been wrong. What I was good at was actually a deficit.
The way that I tend to take over a conversation because I am interesting and have good story-telling skills became, when I was diagnosed with autism, another form of what is wrong with me. I apparently am bad at the “give and take” of normal conversation. I don't make eye contact the right way. If I do make eye contact, it's too much. If I don't, then I'm not checking in. I don't wait to let other people tell me their great stories. If they don't jump in, I go on and on about myself. Which makes me selfish and not good at social stuff. Again, all my best parts were seen as bad. I'd always known that I lived in an upside down world, but now the world was turned right and I fell hard onto the ground beneath me.
My childhood history of having no friends and observing other people around me carefully, figuring out what skills they had that I could learn, and trying to see how to protect myself from bullies by reading a book during recess—these were all proofs of my deficits. I wasn't smarter than other people. I had a problem in my brain that made it so that I didn't naturally intuit what they wanted and expected from me. I kept making mistakes because I didn't have the right equipment. The diagnostician suggested that I had done “ABA” therapy on myself since no one else offered.
I was high-functioning and highly verbal, according to the diagnostician, but I got no gold stars for these traits. Even though I'd had high grades all through school, had graduated from college in two years and had gone onto graduate school, these were all part of the pathology. I didn't “waste time” on a social life because I was incapable of making connections with others. I was broken and it didn't seem likely that anyone was going to be able to “fix” me because part of the problem was that I didn't even see my own brokenness. That was how stupid and blind I was. I'd spent nearly fifty years unaware of how bad I was at a whole series of things that I was only just starting to sense were important parts of the world that I'd ignored for so long.
One of the first things my autism therapist had to do (I think she did this with a lot of late diagnosed women with autism) was to help me work through the negative feelings that came up with the diagnosis itself. Being diagnosed is a wound. It has to be treated first, before you can do anything else. My psychic sense of self had been attacked and I didn't know how to put the pieces back together. I hadn't ever known that I was so wrong before. Now I did, and it was like doing physical therapy. Every step was painful, even though I'd done this before. I knew how to do this. Only I didn't know how to do it the right way. Someone had to tell me all the little things that I hadn't noticed before, when I'd blithely thought I was smart and capable and didn't need anyone else.
Actually, I was just autistic to think that. It was autistic that I was so independent. It was autistic that I focused on academic success in myself and in my kids. My kids had enormously high vocabularies because I was autistic and didn't know how to talk normally to them.
This reaction is one reason that I'm cautious about suggesting to other people that they have autism. It's so painful to go through diagnosis, even if you think you're ready to hear it. I can't imagine going into that situation when someone else has imposed it on you because they think you need to be fixed. It's like being underwater all your life, popping up and getting one breath of air, and then being pushed down again. It's the same as it was before, but now you know that it's wrong and you're supposed to get air, but you're still underwater.
I'd created a lot of rituals to survive the neurotypical world. I needed structure and familiar routines. So I'd created a daily schedule that I only rarely allowed to be interrupted. And I hated it when I had to change my schedule for something else, even if it was a good thing. This was why I never went on vacations. Because I liked how my life was. Why would I want to change it? I liked the pillow in my own room. I liked how things smelled in my house. I knew that I could function here. Other places? Not so much.
But it was also true that I was having frequent meltdowns (which I didn't call that) because I was refusing to acknowledge my autism. Forcing myself to pretend that I was neurotypical meant that I did a lot of presentations and interviews that were incredibly draining for me. I had headaches and nausea afterward (a constant of my pre-diagnosis life) and I thought I was always sick. In fact, I was just an autistic person who was being forced by lack of diagnosis into doing things that were difficult. I can still do difficult things that require a lot of social energy, but I also build in recovery time now. I won't say I never have meltdowns, but they are more rare. And I know what they are when they happen and how to resolve them (quiet in a dark room for several hours).
I know now that my extreme exercise routine, my extreme health routine, and my tendency to perfectionism, are all effects of me autistic in an autism-hostile world. I am learning to be kinder to my autistic self, to remember that autism doesn't mean I'm bad or wrong or that I have to force myself to do things that other people could do easily. Having a diagnosis has meant understanding myself better, and that has led generally to me hating myself less, even though there was a wide uptick in self-hatred at the time of diagnosis.
If you are a late-diagnosed autistic woman struggling with the first phase of the diagnosis and finding it painful (as well as liberating and enlightening), you are not alone. One of the realities of autism for me has been seeing that I react more to almost everything than other people do. I notice smells and sounds and my body is sensitive to emotions in a physical way that other people are not. Most of my life, I pushed my body away because it was unpleasant to deal with body stuff. I dissociated from an early age, which didn't help that proprioception that comes with autism in the first place. Slowly, I've been learning to sit in my body more and hate it less. It's a long process, though.
Everything you said is a reason why I hesitate to get an official diagnosis. I really don’t need all that pain and self-hate stirred up again.
Just getting through a day that neurotypical people consider “normal” is shredding my nerves and wearing me down, though. Right now my plan is “hope I can hold on for a few more years until I’m allowed to retire.”