Autism Assessment Update (bc it's been almost 3 months since I mentioned it haha oops) (it's a novel. you've been warned.)
tagging @examishbookwyrm bc they did comment on my autism assessment post I made in MARCH!! n i didn't respond...(adhd moment) get honourable mention'd.
---
SOOOO. BIG ASS PERSONAL LIFE UPDATE!!! I have... literally the worst news? Like the worst-worst news I think I will ever share. So imma start from the beginning :> [I detail everything about the assessment in this post. The process, the assessment itself, and the after.]
So. This is part of the NS Pilot Program for assessing people who were going to age out of the early-childhood-assessment waitlist (because hey! it is a 5 year long wait! haha!) which was led by NS Health and the Gov. of Canada (who paid for all the assessments.) It's safe to say that NOBODY is happy! (if you look it up you will find articles on how... awful it's been. Also if you look up articles I might have left out details bc my brain is VERY SPOTTY bc i am enraged) but anyway,
The first part of this is they had been calling my mom during the day; my mother had been working days. So she wasn't picking up. And they weren't answering her calls back or her messages! Already a big red flag.
Because they can't get ahold of her they call me. Me! The person they're going to assess, who, at the time, was 18, and perfectly capable of consenting, as an adult, and taking care of their own medical records and appointments and such. They go "Hello, is this (deadname's) mom?" And I go "This is (deadname); and my name is [Chosen]" and they go "Oh, Well. Can you get your mother to call us?" And I said in a tone I believe was very clearly annoyed bc wtf? "Oh, no, you can tell me whatever you're going to tell her!" They tell me "Well we're looking to get you into the NS pilot program for autism assessments" yada yada "is that something you'd be interested in?"
And me being me (poor and reasons to think I'm autistic and being on the waitlist) go "yeah!" AND THIS FUCKING WOMAN GOES "ok then get your mom to call us. this is the date. we need her to confirm." and I go "...why?" and they go "we just need to talk to her." and I go "...why can't you just talk to me?" and she just repeats herself so I go "um. ok. well. you have a good day? bye?" and hang up. So i'm simmering; bc I am literally an adult. I don't need my mom. I should be treated like an adult and I'm getting infantilized. I got the woman's name and # so I give it to my mom. It takes another month to get a date for the assessment approved bc they STILL WONT ANSWER HER CALLS OR MESSAGES.
My mother was required to do two prerequisite assessments a week or two before my in-person one. One over the phone and one over zoom. I am above the age of 16 (as stated) and perfectly capable of consent and being an informant. (you are legally allowed to consent to a majority of medical assessments in NS when you turn 16 w/o alerting ur parents, and clearly allowed to do that over the age of 18 as that is age of majority.) So i'm just miffed. They tell her not to tell me anything. She says fuck that (thank the gods) and so she tells me things they tell her.
So the night before the assessment I help her with the form they MAKE HER FILL OUT before the assessment like "when did your child start walking/running" "when did they learn to ride a bike" "when did they start talking/writing" stuff like that. and I go ok. sure. autism can show in early childhood, it's a neurological developmental disorder. I get it. Even though autistic individuals can have average, slowed, or accelerated development (IT'S ALMOST LIKE ITS LITERALLY CALLED AUTISM SPECTRUM DISORDER)
There's a question that catches me off guard.
"what is your child's dominant hand" ...i'm sorry. back it up. *Yes.* There are studies that say many people who have ASD are left handed or ambidextrous. But oh. My. Gods. Above. THAT IS NOT GROUNDS FOR DIAGNOSIS; and you can also ASK THE KID during the assessment! What kind of question?! [I am right-hand predominant but I am ambidextrous.]
I go into the assessment. On the table; the dr's introductory sheet in a photo frame. His title sits atop the document with a head, MADE OF BLUE PUZZLE PIECES alarm bells alarm bells alarm bells oh my fucking god help me jesus christ please help me i promise i'll believe in you if you help me right now please please plea
"Hi!" A woman greets us, sitting in an office with the door open. I don't know her name. She doesn't stand from her desk. "I'll be with you in a moment."
I laugh awkwardly. My mom says ok as the woman shuts her door. I tell my mom "I hate it here; can we go home?" Because I genuinely feel unsafe; I'm shaking. She laughs softly and goes "It'll be okay." So I put a brave face on bc I love my mom and she's nice and wait for the lady. She calls us in a few minutes later. I don't remember her introducing herself. I don't remember her offering a handshake or any other "polite" gesture. That would be something important to do, and I would have remembered it. She tells us how long it will be and a lay down of what's gonna happen and asks MY MOTHER FOR CONSENT TO FILM ME. Not ME for consent to film ME, an 18 year old. My mom turns to me confused and asks me if I'm okay with it instead. I go "yeah." (I was not okay with it); the woman told us the assessment would not happen if they could not film it. So I agreed; giving *assent* rather than *consent* was something I was pissed off about then and there. The woman asks HER if she'd like to stay so my mom asks ME if she wants me to stay, I hug my mom after I ask her to leave because I'm an adult and can handle myself. I don't need my mom to be there. I sit down.
I have my pompompurin stuffed animal with me and a messenger bag with pens and stuff in it because I know there are things to write and don't like using other people's things. She doesn't ask about the bag. She sets up the camera and such, explaining that she'll have to occasionally turn to her laptop to make sure the recording is still going. I have pompom in my lap along with a fidget while she talks. She says something along the lines of "um, you'll want to put that away, you'll need your hands." And I go, rather firmly, something along the lines of; "I'll put it away when I need to use my hands. I am focusing on you right now." To which she seems surprised and goes "um... okay, that's fine." And continues on. (Was she not expecting an adult to have clear boundaries and be able to state their needs?) She offhandedly mentions something about [Dr] perhaps coming in to see me at some point during the assessment. My heart drops. She's not the doctor? She isn't the psychiatrist? What the hell?
The assessment begins. They're giving me tests for children, she said she made it harder. I disagree. I find the tasks easy. Simple games/puzzles. I tell her I like puzzles. She keeps throwing positive affirmation at me; I become annoyed with it after awhile because I know she's only doing it to make me continue doing the activity. It's common for people who work with children. She is infantilizing me. I know I was thinking it subconsciously.
The tests are not geared towards my age range, I notice immediately. I become miffed, going "these are too easy for me so far" or something to that effect. She laughs at me. I become upset. We start the reading part of the test. I read to show reading speed and comprehension. I read out loud to show my pronunciation. I read words that don't exist to show my reasoning skills when it comes to language. I am in my 5th year of high school (I struggle with school). This task is mundane and annoying. I feel like I am in third grade. I feel infantilized. I feel like the tests aren't going to be accurate. I am annoyed. I do it fast as I can to get it over with. Some of the reading pieces she makes me do multiple times.
We begin the mathematics part. I am not good at mathematics. She has upped the difficulty for the mathematics, she tells me. I begin; The first test is a Working Memory test; listing numbers she reads to me in a specific order. I am bad at it after the more convoluted ones. Some of the work is recognizing shapes and patterns. There is addition, fractions, multiplication and division questions. She points out I'm 'doing the test wrong' multiple times. I tell her that this test is stupid (or something to that effect) due to the structure. She laughs at me. There are a few tests I can't do or become quickly annoyed with (naming mean, median, and mode, prime numbers, fractions.) As I haven't done them since 11th grade level (I took a different math course and haven't done math since I finished my credits 2 school years ago.) We break for lunch after doing half of the mathematics.
I return to continue with the mathematics. I am still annoyed even after eating lunch. I had complained to my mother how it felt like torture: No eraser, No Calculator, no Tools, and no asking for help (She is not allowed to give me help, even if I don't know something.) I am on the brink of actual tears in frustration because I cannot receive help. I understand the potential why, but I think it's idiotic.
We begin the writing and listening comprehension. I am made to write an essay on a game I like and why I like it, I am given 10 minutes. I write it about Minecraft and it's offshoots. For listening comprehension, there are a few tests. I tell her about certain parts of what i've heard. Most of them are ads, so telling her what they say is easy for me, because it feels like slush and I have trained my ears to pick up more important information because of APD (Auditory Processing Disorder). She repeats them a few times to get me to tell her more.
There are more working memory tests. Something with shapes, form, and colours. One about things she's listed. There's a test where I tell her a story in a picture book based on photos only. I am becoming tired. There's a test where I need to copy a picture. I am not allowed to trace the picture. I am not allowed to hold the picture. I am not allowed to use a tool. She says something about how I should like it because I told her I am an artist. I start going on while begrudgingly doing the test that this is horrible, this isn't what art is, and i'd like to not be doing it this way because it is impractical. She laughs at me again. I am annoyed. I get to take another short break after that.
There is another test when I come back with shapes. I see there are 8 pieces and a grid I must put them in; observing the grid, I go "I need all 8 pieces." She gives me 4 pieces. I frown. I say "I need all 8 of them, can I have them please?" as I put the 4 she gave me into the grid. She hands me 2. I put them in. I repeat myself. "I know I need all 8 of them. Can you give them to me please?" She gives me 1. I become insanely frustrated at that point. "What is this?" I go, "Can I have the last piece?" I ask her annoyedly, and she gives it to me. She's smiling. She thinks this is funny? I put it in the place. I rearrange the pieces into a nicer pattern in the grid because she annoyingly gave me the pieces while she takes her notes.
There is an activity where I have to tell her a story using 5 random pieces of garbage. She shows me how to do it first when I already understand the premise and was going to do it after the verbal instruction and presentation of the items. I know it is to assess my imaginative play. I am an 18 year old artist. This is easier than breathing to me. I do it begrudgingly because I am embarrassed to do it. She laughs at me again. I am so annoyed at this point I am thinking the most angry thoughts. What is her issue??? I don't say anything while I wait for the other tests.
I am presented with a test with over 100 questions. I say out loud multiple times "I don't have OCD" to multiple questions I've been asked before to assess me for OCD. She says something about 'Don't think about it. just answer.' and I say something along the lines of "I've been to therapy since I was about 12. I do therapy speak. I know what the questions are asking me. I can't not think about it." She scoffs at me. I am so irritated. Many of the questions ask me if I am suicidal. Many of the questions ask me if I am paranoid. There are questions about ego, and questions about self-worth, questions about poverty, questions about things that don't pertain (to see if I'm paying attention.) I finish the test. She asks if I answered honestly. I say "I think so." But I my answers will be different tomorrow. They're always different later. That's how surveys work.
One of the last tests is asking me questions and having me answer.
Things like "do you have friends?" "how do you feel about relationships?"; I ask her "Well, how do you define relationships? Are you in any? Are you asking me about friendship or dating?" She tells me she has a partner; a husband if I recall. I say something about marriage and romance. She asks me more questions about feelings, boundaries, relationships, and experiences in my life. It is the last test.
We leave the room to talk to my mother in the waiting room. I have not seen [Dr] once. Girl asks me what my pronouns are. I tell her it/its. She complains. I tell her too bad flat out. We leave.
I only learn upon getting home that her name is Alison.
I wait a month for my draft results. I had to get my teacher to fill out a form. I had to sign a consent form for them to do that which they made me do digitally after the assessment and CLEARLY wanted my mother to sign. She gets me to sign it because I'm an adult. She understands.
My mom sits me down. She goes "You aren't going to like this." I frown. "I'm not autistic?" She nods. "You aren't. But they said you have 3 or 4 other things."
Alarm bells again. I get her to bring up my draft assessment on the computer for me to read. I am enraged. They refer to me as "transgendered". They misgendered me. There were numerous, insane typos that would be easy to catch on the first pass.
I begin work on an Essay/Paper telling them why their assessment is bullshit and how I meet the criteria for autism spectrum disorder. (I READ THE DSM-5 AND DSM-5-TR FOR THIS CRAP.) I also berate them the whole time for their behaviour, the nature of the assessment, and lack of care.
A week or so later I get the final draft. They still misgendered me; and there are still typos. I get my mom to email it to me and I send it to multiple of my friends, my Therapist, and give her my consent to share it with my Psychiatrist and anyone else she sees fit with her discretion with the password for the protected document, along with a screenshot pointing out the most glaring typo (being misgendered.) My therapist and psychiatrist show it to the Autism Lead in their district with my consent.
I receive an overwhelmingly positive onslaught of "this assessment is bullshit! You SHOULD be angry." The autism lead tells my therapist I do likely have autism based on what was shown and told to her, and to get a second opinion (as she can't diagnose me without assessing me herself). I tell my therapist more about the assessment. She does some research.
The Psychometrist (someone who administers psychological tests/assessments) is underqualified during time of assessment.
[Dr.] Is clearly on grounds to be tried for Medical Malpractice.
I am now working on submitting a complaint and finishing my paper.
I may potentially be involved in legal trouble against the psychologist I never even got to see or speak to.
