My psychologist wrote the referral letter for my second opinion last Wednesday. Because this second opinion thingy is now becoming real, I have been thinking of why I believe I’m autistic after all – and why it matters. I have tried to explain this quite a few times already, but nobody amongst my staff seems to understand. Because some of my readers just might actually get it, I’m writing it on my blog. I chose to write this in the form of an open letter to my psychologist, but I’m not sure I’ll ever consciously point it out to her.
You have been telling me ever since you became my responsible clinician in late 2014 that you don’t believe I’m autistic. You initially said brain injury explains my symptoms far better, but you seemed not to care. We needed to treat symptoms, not syndromes, you said. Yet last summer, you changed my diagnosis. And you changed it again. And again. You claim this was at my request. Fair enough, I told you I wasn’t happy with just a borderline personality disorder and adjustment disorder diagnosis and I wanted a second opinion. However, it was you who offered to change my diagnosis to brain injury-related personality change, apparently to avoid me getting a second opinion. I was stupid enough to go along. The further diagnostic changes were solely your responsibility.
Yes, I told you it doesn’t matter whether my diagnosis is borderline personality disorder and adjustment disorder or dependent personality disorder, BPD traits and depressive disorder NOS. To me, neither diagnosis explains why I’ve been having problems all my life. After all, personality disorders first become apparent in a person’s teens or early twenties, not when a person is a young child.
There were – or at least, there should’ve been – many signs of a developmental disability when I was young. Even things that my parents tout as signs of genius, should when combined with the signs that point to delay, signal a developmental disability. Like my ability to calendar calculate. Or my first word. It was “aircraft industry”, echoed from my grnadpa when I was ten-months-old (seven months corrected).
These are cute factoids about me. They don’t necessarily signal autism when taken alone. Then there are the signs that point to delay. I had motor skills delays, but these could be due to dyspraxia or mild cerebral palsy. My parents don’t know whether these were ever labeled as such. I was a toe-walker – still am when stressed. Though I walked on time (at fourteen-months-old), I didn’t sit or roll over without physcal therapy intervention.
My language development was quite advanced. I did reverse pronouns, but my parents say this happened only for a short while. I took many things literally growing up. I also had one word that I’d use obsessively and often out-of-context after another. The psychologist who diagnosed me with Asperger’s in late 2007 brushed this off because I couldn’t come up with examples right then. I can now, but I don’t have the energy to elaborate in English.
My social and emotional development was delayed from a young age on. Even though I didn’t have many meltdowns or temper tantrums until I was about six, I did have my problems. I couldn’t talk to children my age. I had trouble forming friendships. I was even more self-centered than any young child.
When I became aware of my differences, I started acting out. Educational psychologists blamed this on my difficulty adjusting to blindness. What if I’d become aware of my social difference then, too? Even though I didn’t start regularly having temper outbursts till I was about six, I remember head-banging and hand-biting from a younger age. I also had this crawling movement in bed that parents of other kids went to the doctor for when the children were toddlers. Well, let me tell you I did this till I was nineteen.
When I became a teen, I had many more difficulties. One could no longer blame my high IQ, because I was in a high-level high school were 30% of the students were intellectually gifted. Maybe then I did it all because I’m blind, even though no-one at the school for the blind had displayed these behaviors either. Or maybe I was precocious for developing a personality disorder. I guess your logic would go like this.
I could give you dozens more examples of why I believe I’m autistic. I have been thinking on these for the last few days. Many, however, are just too embarrassing to go on my blog.
My parents may not be involved with my care now, but you never asked them participate in a developmental interview. Not that I’d want you to do an autism assessment on me, after all the flawed arguments you’ve spun. You won’t believe that someone with hydrocephalus can be autistic, even though there’s plenty of literature showing that they can. You won’t believe that preemies are more likely to develop autism than children born full-term. I even didn’t bother correcting you when you wrote in my referral letter that I had had a stroke. News flash: an intraventricular hemorrhage, which is the most likely cause of my hydrocephalus but was never ascertained, is not a stroke. I don’t expect you, a psychologist, to know the difference, but then at least stop basing your diagnosis on it.
But you’ll say we should look at symptoms, not syndromes. You’ll say it doesn’t matter for my care whether I’m diagnosed with brain injury, even if it isn’t in my DSM-IV classification, autism or a personality disorder. To be honest, the main reason this whole diagnosis thing is important to me, isn’t care. It’s understanding. I need recognition of my struggles. I need to know I’m not the only one. As much as you hate this, I need something I can google and join support groups for. I’m tired of shooting in the darkness. Granted, care matters too. Personality disorder patients have far fewer self-care problems than autistics and warrant a totally different approach. I wouldn’t mind that approach if it turly worked for me, but it doesn’t. However, I don’t mind having a personality disorder diagnosis along with autism – I had one for nearly three years.
You won’t understand a thing about autistic culture. I won’t explain. I don’t have the spoons for that. (Google the spoon theory if you want to know what I mean, if you even care.) Suffice it to say that autism is not just a disorder – it’s an identity. It’s something, unlike brain injury, that is part of us before we’re old enough to realize it. It’s not a disease – it’s a part of who I am.