#still waiting for my autism assessment appointment

[watch-my-cosmic-death]

We working on our physical health instead of mental health boisssss

[atticollateral]

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 move on.

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.

Medical Negligence.

[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.

Fuck that guy.

[life-with-my-three]

It’s been a long fortnight.

Hattie had her PEG changed under general anaesthetic about 10 days ago. It’s always a trigger and trying to get her to eat anything orally after is a struggle. Kinder is talking about possibly increasing her tube feeds there as she just completely refuses to eat there since. Luckily it was only a day stay, but it meant 4 hours total of driving, with Hattie who gets car sick. So I cleaned multiple vomits up.

We dropped Fletch at school last week at 9am. Then we received a call at 9:05am from the local autism assessment team asking if we could get there by 9:30am as they’d had a cancellation. We’d also had a similar call the morning of Hattie’s PEG change, but seeing as we were a 2 hour drive away I had to decline. We’ve been waiting 2 years for this appointment so I was going to try everything to make it work.

We made it to the appointment, Fletch got an official ASD level 2 diagnosis.

Logically it’s nothing unexpected. We’ve known. Autism doesn’t upset me, it’s just part of who he is and that’s fine. I still cried for 2 days straight though. I’m not upset about the diagnosis itself. I am concerned about the world we live in and the arseholes in it though that may make things hard for him just because he has autism. Even though logically nothing has changed and this will make getting help easier.

School disability officer rang that afternoon without knowing what had happened. We’ve been able to set some further things in motion.

It’s good. This will help him. It’s just hard when I have so much childhood trauma wrapped up in an autism diagnosis. I lost my brother to suicide from people bullying him because he had autism. That can’t happen to my boys.

[goddess-glam-x]

November Update

It's not even the 11th and it's already been a whole month...

So we've been declared the winners of the legal case with the car but now we have to wait until the 30th November to get the bailiffs involved and actually get our money back. So we're still without a car and relying on public transport.

I have my autism assessment in January which is a whole thing because of the travel involved. I'll have to travel on the 10th to be able to get to the appointment on the 11th at 10am and it also means a hotel stay so all tips and sub money are going towards that as the travel will be over £100, the hotel is £66 per night and we aren't sure yet if it'll be one or two nights stay - it depends on travel time.

We've started sorting the garden but jfc the cost of removal is stupid high since, y'know, we have no transport to get to the dump.

So yeah...there's my November so far. Tip me here and sub to me here or here it's all very appreciated!

[foster-the-world]

In better news

I thought I was going to write a post about how terrible the pre trial hearing to try and get baby boy an enhanced rate for OT, PT, speech and SEIT providers was. Trust me it was horrible. It was abundantly clear we needed a lawyer. I had called multiple law firms- all of them had long waiting list and one quoted $10k. It would make more sense to spend that money on providers. We figured it couldn’t hurt to go forward with it ourselves. Worse case they say no and we are just in the same spot. The DOE lawyer had “not talked to her client.” so nothing could be discussed. Which brought back not fun memories of years of foster care court time with lawyers who clearly showed up without even reading the case let alone doing any actual work. Anyway it was terrible but we moved forward with writing affadavits and gathering documentary evidence. I was dreading the actual trial with every ounce of my being.

In the mean time they called to say they found a SEIT! Ten hours per week 1 on 1 services. My special ed lawyer friend said she is 99% sure it was the threat of trial that made it happen. I signed an authorization form but no word on a start date. The evidence/affadavit was due and already done so I went ahead and submitted. In an old trick from foster care I included a very cute picture of him as a “remember this is an actual human being we are talking about.” I’m afraid if I cancel the hearing the SEIT won’t actually start. The hearing is next Thursday. Fingers crossed the SEIT starts so I can officially cancel the hearing.

We still need 2xPT and one time per week speech but I’m much less concerned with those.

He’s also been doing really well recently. Someone in the special needs FB group recommended a high school senior who gives private swim lessons really close to our house. The private lessons were the same price as group lessons. Signed him right up. He has no fear so I think he will learn to swim really quickly. I was just afraid to put him in group lessons because I don’t think he will sit and wait for his turn.

My husband took him to the first development pediatrician assessment. Thankfully covered by insurance. He has one more appointment but it seems he will get a ADHD diagnosis. No autism. Which was what I thought but didn’t want to dismiss the school evaluators. I didn’t think I was the type of person to be in denial about my kids diagnosis. Especially because I don’t mind if he has autism - I just didn’t see an overlap in his behavior. Anyway nice to know I’m not crazy. Although admittedly bummed to miss out on the many services insurance would cover with an autism diagnosis.

I would have prefer to take him but had to work. Also, 100% recognize the benefit of my husband going. We need to start splitting this stuff more evenly. It’s better for everyone in the family.

[saydams]

a rant about neurological testing

so i told my psychiatrist that i was thinking of trying to get tested for autism (i'm sure i am autistic, did many many years of research to be sure, but was never formally diagnosed). and she said "oh i'd better put you on the wait list right now because it's super long, don't worry we'll have plenty of time to talk about it before you get the the front of the line".

fine ok. and i look up her company to see how they are on diagnosing adults and surprise they are very good for that, one of the few who does it a lot. so, great!

imagine my surprise when i am scheduled for an appointment with neurological testing within the month. i dont want to say no and not bea able to test later, so i guess i'm doing this? also weird: it's on zoom. and just one day?? i dont know maybe i'm confused about what this involves

anyway! my appointment was today. and apparently it was some sort of audition to see if i can move on to the next step. i had to explain to the tester (who wasnt even from the same org as my psych, he's from some other place...) why i was there and i wasnt sure what to say so i guessed as best i could. and he kept getting interrupted? like people kept coming in and talking to him? and he didnt mute himself or anything.

so i guess i passed the audition because he said he was going to have his office send me a link to an online evaluation and after he got the results from that he would see about having me come in for testing.

anyway! i got the link and sat down to do the assessment and it turns out it is 30 minutes of video games which i am SO BAD AT--i hit the wrong button a lot and double click when im supposed to single click so i will accidentally pick the same square twice or whatever and it hurts my hands and the games all beep and flash and its awful.

then it is time for questionaires and most of them are about "the child" and it warns me to take into account what is appropriate for the child at the child's age. and i assume they mean me but im not a kid so i guess they mean me WHEN i was a child but at what age? all the ages? so i guessed and i tried to average everything accross my ages and i had no one to ask and no way to write and clarify anything and then they asked all these drug questions but i dont do drugs and some of the questions were about what happened when i abused drugs and there was no option for not applicable so i just hit "no" but even though i think that was what i was supposed to do i still had a panic attack and the whole thing was the worst

and i have no idea if it will give anyone an accurate picture of anything and i am so stressed and upset now.

anyway. i am not going to do anything else today. since th test i have sat with some tea and read a book. i feel a bit better (so now i'm just mad, not panicky anymore). and i am going to make myself go for a walk this evening when it's not sunny. (it's too bright i can't handle it now)

i hope everyone else has a better day! if you also had a rough task today, i offer sympathetic internet hugs or a friendly cup of tea.

[mslanna]

It Gets Better

This morning, I found this post on my dash and it home. So maybe now it is my time to write one of them “it gets better” posts.

Some years ago, I had a tag that said ‘Mel needs therapy’ because it was true and I wanted to start one. I made some small attempts – all I could do in my state. It was not enough. The system is set up badly and at the point in my life where I really needed therapy bad, I didn’t have the energy to get through the process.

Much later, I tried again. About 1,5 years ago. I got one assessment appointment and then nothing. I could have called a hotline (ha!) to get appointments with an emergency therapist. You see the problem with that, yes? It is impossible to do this step in writing. Impossible.

So I let it lie for half a year and then decided, no. Enough! It won’t be fast, but I can pay for a little out of my own pocket. Again, I contacted therapists. Of five, I got three replies. Of those 3 replies I got two first assessments. One of them put me on the wait list. I am allegedly on first place of it since December 2023.

The last therapist is the one I see now. She’s great and I trust her with my mental health. I couldn’t afford many sessions because each was 100 bucks out of pocket and my pockets are not that deep. I managed 2 session a month at best. But I paid for them, and I did some work and my therapist helped me with all the steps to get insurance to pay for therapy.

I couldn’t have done it without her. Where does one even start? But she is familiar with that. She’s also familiar with trans and non-binary people. The relief, not having to explain my existence was immense. Autism and ADHD are not things she works with a lot, but she’s more helpful and supportive than anybody else I met during my journey.

And then, this morning, that post. It hit me that, yes, I got better. But no, I have not treated poor adolescent me the way she deserves. All her hopes and dreams – already cracking. She doesn’t know how different she is and why. Only that people treat her different. She’s not one of them. (One of her teachers actually tells her mother little Mel isn’t part of the class community.)

But little Mel is quiet and does okay in school and nobody notices her turning more inwards and switching to English inside her head to have a safe place and language for herself.

I want to tell her that it gets better. It really does. Yes, there’s hell and high water between her and their better future. And no, it won’t be ‘worth it’ and ‘make her stronger’. That’s something she has to tackle alone. But they will. And they will be successful.

And her dreams – little love, you’re doing so well. You have written so many stories that moved people in all the way you intended! You still do. There are two books ready for publishing, and the whole of tradpub can’t stop you. The differences finally have names. And communities.

I am not alone.

Friendships are still difficult. Maybe I can get the hang of them now, that I know better how I work and what works for me. I’m grappling with getting the upper hand on my autism because if I don’t find strategies to work with it in my life, it will express itself however it wants.

My therapist keeps urging me to get a new psychiatrist who actually takes my ADHD seriously. (I’m on the second mood enhancer. At least this one has an effect which is to completely separate me from hunger signs.) But overall it gets better.

And one of theses days I will learn how to take adolescent Mel’s hand and prove to her that she’s fine. She’ll do things her way. And it will work out. She will become many of the things she wants to. And as for the rest? There is still time.

Lighten up, little one. Life is worth living yet.

[stomedmotherhood]

“You make autism your whole personality”

That’s so dumb to say to someone with autism or a child with autism lol like yea I had to fight my ass off for this do so much fucking research and so many tears and people not believing me having to fight with doctors. Also what else defines an advocate?

I wanna help people. I know for a fact my posts and blog on autism helps people. I wish I found someone like me posting what I post when I was younger. Maybe I would have gotten help sooner

I just can’t stand it. As someone who has autism and wasn’t even aware of it until 23, I have done so much research and almost had to make it my personality for anyone to take me seriously I had to teach myself how to unmask, and I’m still learning. it wasn’t until I talked to a doctor about my suspicions of my son having ASD, that his doctor said “we will get him assessed, it’ll be a year wait but we can do that, also, have u ever thought about getting tested before?” And as soon as he said that it made me think… that day I went home and did my research and sure as shit I related to SO much of what I was reading. And I learned so much about the spectrum!

I spent my whole life wondering what was wrong with me, when really. there was nothing wrong with me. I just didn’t have the vocabulary to express myself and communicate my autistic experience, if I had the words I have today I would have gotten help sooner. Trying my best not to mask at appointments has helped me so much.

[compassionatereminders]

Hi!

A bit under a month ago I left an anon about how I had my first diagnostic appointment for an autism assessment coming up on valentines day. Since then I had the one which had a bunch of tests which Completely Flattened Me (so much mental work in so many ways)

I have the actual Report coming up in a week. I cant quite recall what that involves but i know its gonna be long! And I'm also still like, a lil nervous because i don't want to have wasted my parents' help with the cost, but I also know they were in support of this from the start and if I'm utlimately not autistic or dont have a similar thing with like ADHD or something, its moreso just going to create confusion in my head cuz like, i have 0 idea on what else I could be, and it would be really really nice to have a crystalised Reason for why i feel so out of place sometimes.

Anyway, I may well report back with the results or maybe not, I'll see how i end up feeling. For now I definitely need to put a cap on this ask before I get too into my own head because of how late it is.

It can be so scary to wait for the results of an evaluation because often so much hinges on getting that official validation! My fingers are crossed and I'm sending my love! May everything work out and may you get the answers and accommodations you need ❤️

[schizowitchic]

massive huge vent. tw for suicide and self harm and severe mental health difficulties

it actually literally sucks to see my friends getting mental health treatment. because i basically got instantly dismissed the first time (told me id be fine with school counselling after i literally ended up in hospital overnight after a suicide attempt), discharged without them telling me (when i raised concern that i was hallucinating and experiencing delusions, they ignored the presence of delusions and told me hallucinations were normal teenage experiences) so i had to wait even longer for therapy to deal with anxiety, then it was six weeks and i realised it was not helping because i felt the same even when i tried to apply the therapy and do the breathing exercises every day (I can rationalise thoughts away all I want but my body will still feel physically ill). so now ive reached the point where ive given up on getting mental health treatment. by picking up lovely coping mechanisms such as nicotine and self harm addictions (Self harm addiction has existed for like three years but I've hit a major relapse point). and basically repressing all my emotions so that nobody ever tries to make me go through the mental health system ever again.

anyway yeah meanwhile my friend almost had a suicide attempt (she was really contemplating it and called a hotline) and basically was on antidepressants within a month and had longterm therapy. she got on the autism assessment waiting list way after i did but got her diagnosis appointment before me. another friend went to the GP and got prescribed antidepressants basically instantly.

i don't know what im doing wrong for no person in the medical system to ever take me seriously (They don't seem to take my physical health problems seriously either!!). i don't know how to "perform" mental illness in a way that might actually get me treatment. i don't know what i need to do to get help.

i know i didn't help cases by lying and saying i don't self-harm - but i couldn't say that because i was under-18 at the time and they would tell my parents and i did not want my parents to know. and also. i was fifteen. in hospital. after overdosing. what about that screams "patient that needs no official mental health treatment - go to school counsellor. we will not properly check up on you at all".

i have considered asking my parents if they'd be willing to drive me to the nearest Mind building to see if they'll help me there - but i know all they can offer is talking therapies. and i suck at talking therapies. i can never explain the problem so i just end up pretending i have none. and also i find the way therapists talk to you disgusting. why the fuck do they talk to you like that.

at this point i feel like im gonna drift through life in some sort of haze, never being able to connect properly with people due to my communication deficits, never able to do stuff i want to do because i have no motivation, and just.... what is the point.

and people make it seem like you can just help yourself or whatever but i can't. it doesn't work anymore. i spent 5 years managing my own mental health from the age of 10 and i reached the point where i can't do that anymore. a counselor literally told me that im actually really good at rationalising irrational thoughts. which is great. until ive completely rationalised the thoughts and know nothing bad will happen but im still unable to do whatever it is that made me spiral.

ive spent the past year waking up to the taste of my own bile due to how nauseous i was from anxiety, ive literally lost weight due to anxiety, AND THERE IS NOTHING I CAN DO ANYMORE. what the fuck is a breathing exercise gonna do to stop me feeling nauseous. what's the point of 5-4-3-2-1 if i can never fucking remember which one is which sense which stresses me out even more.

god. anyway.

it also really fucking pisses me off when the people who are getting treatment complain about it . like . i understand it might not be good for them . BUT YOU ARE GETTING TREATMENT . i am not!! my six weeks of anxiety therapy helped me for like a month and then it wore off and i don't even know what to do about that!!

[doilyboily]

So in case some of you don't know, I'm a trans 16yr old in Western Australia, AKA the worst Aus state to live in for trans minors.

I'm serious.

This state is behind on LGBT+ rights by at LEAST 5 years compared to the other states of Aus, our government has been promising to outlaw conversion therapy for the past year (give or take) and still hasn't made it into law. Despite what people believe, conversion therapy is still LEGAL, sure it's difficult to find but it is still fucking legal.

Out of the entire state of WA there is only one clinic that can offer gender affirming care to under 18s, besides the one that offers it to 17-25yr olds, and that is the Gender Diversity Service at Perth Children's Hospital. WA is a huge state, so if you lived in Albany you would need to drive over five hours to get to Perth, it is a ten hour drive there and back.

Sure they offer Telehealth appointments but what about when you need to get your HRT script, or your height and weight recorded? Sure you can do it via Telehealth and give them that info through email but they prefer to meet face to face.

The GDS doesn't have enough staff to meet the demand, and the waitlist for an actual appointment with your care team after the initial assessment is three years. I was on the waitlist from 11-13 1/2 (eleven to thirteen and a half), by the time I had my first real appointment I couldn't even be prescribed puberty blockers because I had already finished puberty. And because of the lack of info regarding minors transitioning in WA, and minors transitioning in Australia in general, my parents were unaware puberty blockers were even a thing, and I ended up thinking that I could start T at 14 with parental consent and after being deemed Gillick Competent.

nope

You can only start HRT here after you turn 16, unless you want to get a telehealth appointment over East and in which case, good luck, because most Drs over there that prescribe to minors are completely booked out. And to make things worse for my mental health, the psychiatrist on my care team said that if I didn't start attending school regularly that I wouldn't be deemed Gillick Competent and therefore, wouldn't be able to start T until I was 18.

That caused me to start having panic attacks almost daily, both while I was getting ready for school and at school drop-off. I was a complete mess, because this psychiatrist held the power to deny me medical care over something that had nothing to do with my ability to comprehend or consent to HRT. I wanted to file a complaint so badly, but my dad wouldn't let me, he said that he didn't have an opinion on it because he wasn't a medical professional and therefore didn't know the standards. So I bit my tongue, because if I did file a complaint she would know who did it, and even if she didn't she would still be kicked off my care team, and then I would have to wait months for a new psychiatrist which wasn't an option, so I clenched my teeth and let her words cause me a depressive episode.

There is so little information regarding transition for minors in WA, that even when I specified what state I was in, I still got info for the other states. So many doctors are still ignorant when it comes to the LGBT+ and trans people, that my own paediatrician tried saying that if gender roles didn't exist, or if a trans person lived on an island isolated from society, that gender dysphoria wouldn't even be a thing. Which is completely untrue, and I was in too much shock from hearing such utter bullshit that I didn't even respond.

I wanted to file a complaint, but my dad argued that he was just being "supportive" in his own way, and that because he was also both my brothers paediatricians, he couldn't possibly have some bias against me, because he's known our family for over twenty years. Mind you, that doctor is known for being dismissive towards girls/females/AFABS with autism and he is very "old fashioned" (cough, ignorant, cough), so why the fuck wouldn't he be ignorant towards the actual science around gender dysphoria?

And then a member of a political party in my state recently proposed that if she was voted into Parliament, that she would ban HRT, Puberty Blockers, and gender affirming surgery, for under 16s.

Which is quite... funny, because HRT is already illegal here for under 16s and you have to have a psych eval that takes years, surgery is only done in cases where gender dysphoria has been documented from a young age and only after multiple very long, very tedious psychological evaluations and even then there still aren't any surgeons in the entire state that would do affirming surgery on minors.

And then banning puberty blockers for under 16s is just fucking horeshit, because how the fuck do you expect puberty blockers to work on someone over 16?? There is nothing to block! Most teens have gone through Tanner stages 1,2 and 3 by age 16 so there are no more significant changes to be prevented, except maybe height but even then its not a guarantee.

She only announced this after it was confirmed that the gender reassignment board would be abolished, therefore making it so that trans people no longer have to have genital surgery to have their sex markers changed in our state, y'know, something that most of the other states have already done.

I'll probably continue this post after i get the rest of my thoughts in order, so I'll tell you all (glances at 50 followers, most of whom are bots) more about how shitty this state is for trans minors maybe in a few days.

[softertoday]

i got a tattoo last night. i like it a lot. but when i got to the shop, there was loud music playing, the tv in my artist's room was playing with the volume all the way up, the big lights were on and there was a just lot happening. i was immediately overstimulated. it was scary because i was about to sit there for 3-4 hours and i wasn't sure how i was going to get through it while getting my leg blasted at the same time.

i texted my friend and she said i should use my airpods and just turn the noise cancelling feature on without any music or anything. and to be honest, i didn't even know that was a thing lol

so i did that and it helped. i was able to still talk to my artist and felt less overwhelmed. the lights were still really bright and florescent but i was able to get through it well enough that i didn't have a breakdown or shut down at all.

he asked me at one point was i spacing out, and i was like no i'm ok just chillin

but i was trying to get myself to stick around and not space out.

it was fine, and my tattoo looks great. but it was a lot. and then we went to the book warehouse thing today that was so completely overwhelming. i've had enough. i'm staying home for the next 5-7 business days.

i say that, but

i have a hair appointment on monday morning and a therapy session in the evening

my first intake appointment with the autism assessment provider on tuesday

wednesday i'll be home because i will be volunteering on the HelpLine and in meetings for the HelpLine

thursday i don't have anything at all (thank god) but i'll be doing schoolwork

friday i have to bring my car to the body shop and who knows how long i'll be there waiting for it

and then the next tuesday i have the actual autism assessment

and spring break is over. so i'll also be trying to get schoolwork done through all of that too.

i have my usual schoolwork, but i also have a pretty hefty paper due in 2 weeks that i actually need to work on as well.

i need a nap.

[halfdeadwallfly]

Warning: maaassivvee vent incoming

So, I'm mad at my doctor.

I've been seeing her basically since birth. I've always had issues, if you will, but in the last couple years, everything just compounded, and stuff has been cropping up more seriously. I went to therapy, got diagnosed with generalized anxiety disorder. Was diagnosed with obsessive compulsive disorder and switched to a specialist. Got recommended to see an occupational therapist for related tics. Started looking for another general therapist to deal with worsening anxiety. Got recommended by my sibling's therapist to look into the possibility of being on the autism spectrum.

Through this, I've had to go back and forth with my normal doctor, discussing diagnoses, medication, etc. I've had to hear her opinions on my problems, put together through brief, cordial meetings of her asking me basically irrelevant questions about what she mistakenly perceives to be going on.

Anxiety? She asked about the stress of my school workload, and recommended that I go to prom. OCD? She asked about compulsions like hand-washing and checking locks. She attributed the symptoms that I tried to explain, for the most part, to anxiety.

My mom, not knowing how to deal with a tic attack, brought me into the office one day when I couldn't stay at school during a rehearsal. My whole body was sore and exhausted from shaking, my knuckles were bleeding from being tapped open, and I was trying not to cry waiting for it all to die down. When I went in for my next appointment, she awkwardly asked about "the things you have to do sometimes that make you stressed."

When I brought up potential autism screening, she was shocked and taken aback. She didn't think that could at all be an option, because, as she put it, I'm too smart. People with autism, she said, have trouble speaking, behave inappropriately in social settings, and don't understand social norms and boundaries. In her assessment, based solely on twenty-minute-long annual checkups (always, of course, accompanied by politely stilted small talk and guarded non-personal positivity), she determined that I have never really had any issues socially that would warrant concern. She said that I could maybe be on the spectrum, which would mean that I had some autistic traits, but not actually Autistic. When she asked why I thought to bring this up, I explained my thoughts about sensory issues, social struggle, stimming, and my preference to make plans and find comfort in routine. She was, of course, doubtful. She referred to moments that my mom cited as potential meltdowns during my childhood as moments when I get "tearful."

And it's just all so frustrating, because on top of having to deal with all this stuff and the rest of my life as it is, I have to worry about how this doctor will potentially completely misunderstand the issue and become a roadblock to getting better treatment and understanding for myself. I wish that I could have a medical professional on my side, to help and explain things to my parents when they misunderstand or underestimate what's going on, but instead it's just someone else in a position of authority that isn't getting it either. And I don't want to complain, because I know that there are so many people going through much worse, but it's just frustrating. I can only hope that my doctor is better with other patients who haven't had the opportunity to see other professionals like I have.

Anyway, TL;DR, my doctor doesn't understand my non-physical health issues and it's really annoying because I still have to go through her about it.

[floriumm]

Welp, my doctor prescribed me ADHD medication and depending on my pharmacy doing their job I should be starting it tomorrow. I’ve been through so many different antidepressants in the last like 2 years that made me miserable and straight up sedated me only making things worse.

She said she thinks the reason I’ve been so resistant to so many different treatments (even before medication) over the last decade is because the anxiety and depression might be stemming from ADHD which a lot of my symptoms seem to line up with.

I still am on a waiting list for my autism and ADHD assessments (thanks small town living) so hopefully I get a call to schedule my appointment soon. But I’m glad we seem to finally be narrowing things down. My doctor said she’s confident that I should have good results with this new one so I’m hoping she is right. Maybe I can finally be a functional adult lol.

[aelfwyn]

Agreed with this last addition. I get no sense from the actual article that he misrepresented his symptoms or lied; instead the severity (and cause) of his ADHD-like symptoms was misjudged, leading to misdiagnosis.

And if private clinics are indeed, due to negligence or incompetence, misdiagnosing people, that is BAD and should be investigated – but posing as a patient was very much not the way to do that, and the resulting attention-grabbing headline will only serve to further discourage people that genuinely need help with their ADHD and reinforce the stigma of ADHD being overdiagnosed. Reporting like this is a big reason why it took me 10+ years to finally work up the courage (and the necessary executive function) to make a GP appointment and ask for a referral.

So if NHS waiting times are stupidly long and private clinics can maybe not all be trusted, what is one to do? if you’re based in England (does not apply to all of the UK, sadly), check out Right to Choose. It’s a system that allows you to ask for a referral to any NHS-associated mental health provider anywhere in England, such as when your local wait times are too long. ADHD-UK has a list of eligible ADHD/Autism assessment providers at the above link. Several of them are unavailable due to massive demand, and the ones that are available still have varying wait times, but they are not as desperately long as your local NHS service is likely to be. I asked for a referral to Psychiatry-UK and just over 6 months later had a video-call assessment. Now it’s another 6 months wait for the titration team to get medication. Still long, but not 29 months and counting.

As for the assessment itself, I had to fill in pre-assessment forms with examples of both current and childhood symptoms, and they also required essentially the same forms to be filled by a witness. The questions basically covered the standard diagnostic criteria, but the phrasing leaned heavily towards the more cliché ADHD symptoms, such that as an adult inattentive ADHD type with years of practice masking/working around my symptoms, I felt I kinda had to shoehorn my actual difficulties into questions that were asking for different outward symptoms (as my friend put it, the diagnostic criteria really seems written “from the outside in”). I also struggled with the childhood symptoms aspect because I was a gifted kid and didn’t really show any typical symptoms, did well in school etc. The assessment itself took 50 minutes and involved cross-checking against other possible explanations for the symptoms (such as medication or other health conditions) and also autism, and the psychiatrist finally concluded I had high-functioning inattentive-type ADHD (no surprises there) and offered to refer me to the titration team. He also offered a reading recommendation (Hallowell’s ADHD classic Driven to Distraction) and general advice (most of which boils down to “do not try to fight against your brain” and “give yourself some slack”, which, yes).

ANYWAY, I really gotta, like, work (getting distracted from work by ranting about ADHD? couldn’t be me), but tldr; Yes, the path to diagnosis for ADHD and autism in the UK is tricky, to say the least, and there’s still a lot of stigma around it, and reporting like this article really is NOT helpful in both regards. BUT if anyone reads this and checks out Right to Choose and gets help faster that way, that’ll be a positive at least. Sending much love to everyone struggling!

This is fucking embarrassing ‘journalism’ from the BBC.

Guy goes to an NHS doctor, flat-out states the nature of his investigation and gets behind the scenes information on assessments.

Then he hits up three private clinics actively looking for an ADHD diagnosis, has his friends fill out witness forms, and is shocked when he receives a diagnosis.

An utter disgrace.

[wanderingparasite]

why is it so hard to get an assessment???

i was put on a waitlist for an ASD assessment almost a year ago, and when i had made that initial call, the person helping me had told me that i’d likely be getting a call back sometime in the fall for an evaluation. in the fall, after not hearing anything, i worked up the courage to call again, but this time the person working said that no, in fact, i wouldn’t be getting assessed soon. actually, she said, nobody should have given me that timeline because they have no clue how long the wait will be, that it could be several more years, and that there’s absolutely no way to check where i’m at in the system.

defeated & sad, i decided to reach out to a different organization on campus, who got me in for an ADHD pre-assessment appointment just a month later. i had that appointment and during it, the doctor agreed that everything i described sure sounded like ADHD. however, they didn’t end up taking me in to get evaluated fully because i had too many… confounding factors? he told me that he discourages me from getting tested by ANYONE, in fact, until i get my anxiety under control, and stop smoking weed (even though i explained that ive been having these symptoms since childhood). he said, since im well enough adjusted and still have good grades, that its not that big of a deal.

not to mention times i brought up the possibility of ASD to my past psychiatrist who literally told me “no i dont see it, i’m really good at noticing autism, its always very obvious” while we had only ever had virtual sessions, where he could only see my face and shoulders. he couldnt see me avoiding eye contact because it was through a screen, he never asked about my social functioning, but he sure did diagnose me with OCD and never told me why, even though the only obsessive tendencies i have are closer related to autism and NEVER have any catastrophizing thoughts to go with them.

i am just thankful that i have a supportive therapist right now who validates me and gives me as much support as she can with neurodivergence stuff, because this fucking sucks!!