“You mask it very well but you’re definitely autistic.”
This, essentially, was the outcome of my autism assessment yesterday. So no surprise to me or anybody who knows me. The obvious question is, “Why choose to get assessed at all when you’ve known you’re autistic for more than 10 years now?”
The answer lies, as so often, in what employers and medical professionals will accept as authoritative. In this case, my own word based on extensive reading, analysis and consultation carries less weight than that of a duly-designated medical specialist who had a couple of hours to review the results of a selection of written tests and speak to me about my experiences.
My pursuit of this assessment was for a personal reason: it was to provide evidence of the validity of my claim to need assistance and adjustments in my working environment to reduce the obstacles I encounter. I don’t believe it should be a requirement for access to such accommodations. Maybe that makes me a hypocrite for bowing to the demands of a system I feel is unfairly exclusive.
It was still a relief to hear their verdict: I won’t lie about that. It’s always reassuring when somebody else sees the same things you’ve seen and comes to the same conclusion. I would prefer if none of this were necessary, that appropriate accommodations would be provided as a matter of course based on a person’s own assessment and declaration of their needs.
In fact that’s pretty much my situation right now, stating my own needs, except that this magical piece of paper imbues my words with sufficient borrowed gravitas to pass the gatekeepers. In simple terms: if I wave this document in front of the people I need to convince of my needs, it dispels their doubts that I am speaking honestly.
The thing is, it actually doesn’t need a professional to get involved to identify when a person is autistic. Indeed, in many cases it’s not a professional who first recognises the signs. I knew I was autistic for all those years leading up to a professional agreeing with my own assessment. To me, and to the overwhelming majority of the people around me, my own assessment was perfectly valid.
I didn’t seek or need the outcome of my clinical assessment to validate my own knowledge that I’m autistic, and I stand by all the other autistics who know for themselves. Self assessment (also called self diagnosis, but I’m not keen on the word ‘diagnosis’ with its implication of illness) is as valid as clinical assessment, and it’s time it was fully and widely recognised as such.
My Autistic Dance 
I don’t have a pretty piece of paper with my diagnosis on it – I only have Dom as a witness to when I was diagnosed. With that said, a psychologist friend knew within the first ten minutes of us meeting (I think I told you that story, and he’s autistic himself).
My sister once had a girlfriend who worked at the same nursing home that I used to work at. Apparently some of my ex colleagues would say things about me (some were scared of my sexuality, others just thought I was plain weird – and I can genuinely understand why) and my sister, when dropping in to spend time with her girlfriend during her lunch break, just fielded everything off with a response of “Well, she’s autistic, she can’t help how she is”. Some of them once thought I fancied one of the other carers (me: “Are you serious? I used to babysit her!” – people can be so bloody stupid lol).
Even if I hadn’t known before I met you in real life (and I genuinely can’t think of a time without your friendship in my life – it’s like we’ve known each other forever), I would have picked up the fact that you’re autistic right away. My aspiedar is never wrong!
You must be feeling so relieved to finally have it on paper, though. All the hugs to you, Mayhem and Flufflebutt 🙂
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Aww, thanks ❤ Hugs back to you, Dom and all the dear eight-legs. (I can’t remember all their names, and you’re the one with the database!) I know I don’t have any doubts about you being autistic either: it’s one of the reasons we get along so well!
What you say about “weird”: the last time I saw my dad he said to me, “You always were a bit weird.” Mind you, this was the first time he’d seen me post-transition and he hadn’t know about it beforehand because my useless brother hadn’t told him despite me asking.
I talked over my conflicted feelings about the diagnosis with P and they helped me process it all, so I’m feeling okay about celebrating getting it now.
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To me, getting a confirmed diagnosis of what I already knew was such a weight off my mind: everything suddenly seemed to slot into place and make sense! I actually stopped feeling “weird” and started to feel like “me”. Basically, it gave me licence to embrace my crazy and stop caring about trying to “pass” as NT. I’m so much happier in myself for that!
I hope you get the accommodations at work that you need xx
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I also sought diagnosis for the same reason: seeking accommodation in the workplace.
I was first correctly diagnosed about 8 years ago when my son started seeing a new psychiatrist (he was being treated for ADHD, and it was NOT working), and they had us fill out the consult paperwork. The dr was considered the very best child psych in the state, was always booked full, saw new patients on client referral only, was very picky about whom he treated, and wouldn’t see anyone who wasn’t basically in a crisis. At the time we began, he was writing a book and doing a research study for it, and used his clinic as a starting place to find participants. We did not participate in his study, but we did fill out the study survey. Specifically, *I* filled out the 80 pages (literally, double-sided, so 160 single-sided really) of questions — mostly long-form answers or essay questions with instructions such as “please attach an additional page with your answer”, which I did, of course, resulting in about 300 single-sided pages being submitted for our consult.
When we walked in for our first consultation (after submitting the paperwork), the doctor says very matter-of-factly, “Well, your son has Asperger’s. What is your need from me?” We look at each other and at him. He says, “You don’t know what that is????” We shake our heads. He says, “How can you not know? (points straight at me) *You* have Asperger’s.” We look befuddled. He mutters to himself, “It’s as plain as the nose on her face!” And then he explained. Our son continued with that doctor until we moved states, and has been very successful since that day.
Because he was a child psych, he did not process me, or give me a formal Dx. But from then on, a *lot* of my life made sense. However, I had been (mis-)treated for Bipolar Disorder II for a long time — and no psychiatrist I talked to would alter my Dx or Tx based on my “informal diagnosis”. I went to an autism specialty clinic in my area for assessment. They said, “Well, you have a lot of signs and symptoms, but you’re so well managed, I don’t think a new Dx would be beneficial.” ?!?!?!?! *YOU* don’t think I could benefit from the legal benefits associated with my proper Dx, so *you* refuse to give a correct Dx?
I finally saw a new psychiatrist when my last one became impossible to book with. I didn’t tell him what I was priorly diagnosed with — any of the many, many Dx I had. He says, “Why did you leave this blank?” I said, “My official Dx list is so long, it wouldn’t fit, and you didn’t give me an option to add a new page.” That was the entire conversation so far. He muttered to himself, “Eight-four five… what do they call that in the blue book….” and he rifled through an *ancient* many-dog-eared book (which I later saw was the ICD-10), pulled out a sparkling new copy of the DSM-5 (blue cover for his), and said, “GOTCHA!!!” He turns to me and says, “I need you to remember the number Two Nine Nine Point Eight Zero which you won’t have trouble doing, but tell that to the girl at the desk when you leave.” Three sentences with the man (My name is… I am xx years old… You didn’t tell me to use more paper…), and he had it down (I looked it up later). He is 92 years old, been doing this for more than 50 years, very Jewish, very funny, and about as scatterbrained as any doctor I’ve ever met, but he saw it in three sentences.
He asked me about the blank line two visits later, and I said, “Well…” I launched into the list of diagnoses and the years I got them. He stopped me when I wasn’t nearly halfway done, and says, “You know what that tells me? Besides your actual diagnosis because who else can even remember all that?” I shake my head. He says, “It tells me they didn’t have a f***ing clue what they were doing. Not a f***ing clue.”
I ran into a legal situation later where someone was attempting to claim my Bipolar Disorder made me unfit to handle the issues at hand. My therapist says, “Oh, just let me talk to them. I can explain in great detail why you are an Aspie and not Bipolar, and why you would have seemed Bipolar to anyone who didn’t know what they were doing.”
My most helpful accommodation is requiring written confirmation/summarization of conversations or training. People don’t want to write things down because then there’s a trail, or then they’re committed to a path. But then they want to hold me to task for forgetting elements in a process, or for misunderstanding an element of the process. But pointing out that with a written confirmation, we can clarify misconceptions, and reduce time repeating a task, they usually get on board sooner than later. It’s also funny, because I’ve taken on a role in my department as unofficial official documentation lead, because they know that I’m going to be the most thorough person for that task — and it doesn’t bore my brains out to iterate over the process until it’s written out clearly enough for a new team member to grasp quickly.
So yeah, there’s benefit. And I agree with you 100% that it sucks to bow to the system that is inherently unfair, exclusionary, and requires much more from its victims than from its perpetrators. But I can also tell you that a year and a half of accommodation have completely changed my ability to keep a job and to communicate my needs to others in a way they understand. And if they don’t understand, then I can just say, “Well, it’s the law. You have to do this in this way when you work with me.”
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Wow! That’s quite an experience you had. Thank you so much for sharing it with me, and I’m glad it’s worked out well for you in the end.
I talked over my feelings with my closest friend and they’ve helped me process, so I’m becoming less conflicted about it and seeing it as a step forward.
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