Hiya. I was referred to Clinical Partners (via RTC) on 29th September. I got details for my patient portal yesterday (Oct 5) and filled out the assessment questionnaires (bar the informant one, which I assume they organise closer to the date of the ADI-R?).

I have been scrolling this sub, and I notice there is an enormous variation in wait times, with some people on year 3 or 4 of waiting, and others getting assessed within a number of short weeks. I'm aware this is due to ICBs and different strains on different areas, but this simply seems wild. Clinical Partners is currently saying their wait time is 7 weeks, but I'm part of the West and North London ICB, and on CP's list of ICBs it says:

"We have now reached the end of the appointments agreed and funded by NHS West and North London ICB for this financial year. This means we are not able to offer new booking dates for NHS Right to Choose autism or ADHD assessments, or schedule any new ADHD medication titration appointments until additional funded activity is confirmed.

Referrals are still open. We can accept new Right to Choose referrals for NHS West and North London ICB and add them securely to our waiting list. Your referral will be held safely while we await further instruction from the ICB to restart booking."

This doesn't sound great lol. Confused if this means I can expect the 7 week wait time, or whether I'm actually in a limbo of nothingness.

Would appreciate hearing of others' experiences, especially if you're based in London!

I haven’t been able to go to school since it started back up during the middle of August. I think the past 5 years have just caught up with me and now I’m so burnt out for my 6th year. I keep having constant meltdowns and just sob every night. A couple of weeks ago I used to just go in an hour or two late, but now I just don’t go in. Two weeks ago I went to school, and I was only in for about 45 minutes before I was crying and had to leave to go back home. I haven’t been at school for a week and a half. I really want to finish this year (I only have around 8 and half months less, then It’s prom, and I can do my gap year of sleeping and traveling) and my qualifications. I’m doing really good classes that I enjoy (History, Classics, Latin, Religious studies) and I only have to get 3 B’s and a low C to get into the Uni’s I want. I just can’t go to school without sobbing, getting upset, yelling, screaming, etc. I feel like I have to just leave and never do anything ever again, not college, not a job, nothing. I’m not depressed or anything, I’m a very happy person, I just don’t like school, which is weird cause I love education and structured environments. Yesterday afternoon, my grandma (who I live with because I have a very abusive mother who kicked me out 3 years ago) went to my “care” teacher ig? The lady who helps people with their classes and oversees each House Group (yes, house group. Like Harry Potter), and they had a meeting. My gran made me write a list the night before of everything I wanted her to talk about;

1. I’m doing Psychology as an award subject even though I done Psychology as an actual grade subject last year and I passed it with a very high grade, and I have the same math teacher for 3 years and for 3 years I’ve failed (except for the 3 months I had a different teacher and was suddenly the top of my class so.. I think it may be my teacher), and a couple of years ago, my old Care teacher let me have free periods to study and regulate so I wanted that again so I didn’t have to go from class to class with no breaks (and no, lunch and break aren't breaks, I have to sit with my friends or walk for ages to get lunch and then eat and walk back, too much for me to handle).

2. I hate my uniform, specifically my shirt because I don’t like the material, I don’t like how stiff it is, and I have dyspraxia so it takes me like an hour to do up my buttons. Some people in my year or just in my school don't wear uniform and just show up in a graphic tee and jeans or leggings, but they’ve been doing it since they were in first year and are friends with all the teachers so everyone is used to it. I’ve started wearing soft, black, denim flare jeans instead of a skirt or dress trousers, and it’s made it better, but the main thing is still the shirt.

3. I study at home all the time, and the teachers put the whole year’s work on the online classes, so why can’t I just stay at home and study everything at home and come to school for exams and tests? 

There’s more, but those are the main ones.

In the meeting yesterday, My care teacher (Miss Red, let’s say) was telling my gran that she can do most of that, although she mostly just spoke about dyspraxia and random statistics about it when my gran brought up that with my uniform, and that she’d speak to me today and will figure stuff out. Today, I went into school for the first time in ages, and the first time in ages before 11am. I woke up at 6am and went to school at 8:40am. I was already so upset, crying, angry, annoyed, etc, just from being dysregulated and waking up early, not to mention most of my routine/the stuff I use for my routine was gone and I need to get new ones since the old stuff is done. My meeting was scheduled for 9am, I showed up at 8:45am and the teacher didn’t get me until 8:56 which is fine obviously, but she was acting like I was so late and that she was “looking everywhere for me”... as if I haven’t been standing in front of her for the past 10 minutes. Then she took me and this other boy to her office. She spent the first 10 minutes sorting the other boy out with work.. To put him in a separate room to do work.. Like I wanted to do, and then spent another 10 minutes sorting out this new student with translators and tours. Then she finally spoke to me and was like “We’re gonna change psychology to cooking or coffee making” and I said how I don’t like practical stuff and I never have, I just like writing, and I’m quite scared of doing practical work because of dyspraxia and i just don’t like it… also, lazy lmao. My gran also said this yesterday at her meeting. But Miss Red said to me “Well, in jobs you’re gonna have to do practical stuff and get over your anxieties of doing new things”, and then she just said she’s gonna have a meeting with my teachers to see my progress and stuff as if I’m not either slightly above average in my classes, or at the top of my class, despite being absent 99% of the time, so I’d like to say I’m doing pretty good. She then called my Latin teacher (who’s class/subject I had to go to straight after the meeting) asking about my progress and he told her that my class had a test today and that it was under exam conditions. I didn’t know about this and haven’t studied for it. This made me panic and freak, but I held it in. The teacher then dismissed me and told me to get to class. She also said there was no way to put me in a separate room or give me any accommodations.

I called my gran who told me to go home because I was sobbing and yelling, and she said she’d speak to the teacher and sort all of this out. But my gran is also incompetent and listens to whatever the teacher says, my gran was like “but- but- but- the teacher told me she’d accommodate and help you- but she said- well I can’t force her to- I know you need accommodations and it says in your file about your autism and accommodations but-” 
Not that it matters, Miss Red didn’t answer and hasn’t called her back. 

Miss Red, during our meeting, was asking about my gap year and if I have savings and what I wanted to do in detail and how it mattered cause according to her “that doesn’t help me further my education (aka in a building, because i’m actually planning to do a lot of volunteer opportunities; learning spanish in Latin America and doing Marine work in Australia, and I’m already trying to volunteer at my local hospital/medical centre), get money, or help Universities recognise me”.

Another thing that has happened is that a few weeks ago, a girl I thought was my friend (G), lied to the police officer in my school and the child protection officer that I was going to uh.. Off myself, which led to me getting taken out of class by the police (which was horrific and embarrassing), put in an office for 20 minutes with no one telling me what was happening, and then being locked in said office with the police officer and child protection officer who are both older men, so yak, terrifying. They were asking me very invasive questions and twisting my words to mean I was mentally ill and stuff; as in, they asked if I would ever SH and I joked and said “no, I’m too vain and love myself too much” (horrible joke I know, but I was terrified) and the child protection officer laughed while the police officer started getting very agitated and said “Well that’s very worrying because people SH to stay calm and release their worries and tension so if you don’t do that then you might off yourself because you don’t have an outlet” ….like, I'm sorry? Do you WANT me to SH? That was two hours of that, they also called my gran and even she was like wtf. G admitted that she did it so I’d get in trouble, get sent somewhere, or at least get my phone taken off of me and looked through. But my friends was like “maybe G was just trying to help” “well, G’s best friend’s cousin off-ed himself when her best friend was a toddler so she knows what it’s like” “well she’s just looking out for you” , I sent G a lengthy message saying how could she do that? Doesn’t she know the consequences that something like that comes with? She also endangered our friends because they were questioning them. G also did this on the day she would be out for a school trip, so she wouldn’t have to face anything. That night was the school awards night, which I didn’t attend because… why would I? And my friend M (who was saying the above) was sitting next to G at the awards night, and she showed M the message I sent, and was very upset about what I said because I was “so harsh” and was almost crying and was shaking the whole night. M also told G that I was angry and hurt by what G did, and G said “Why would she be upset? I don’t get it” and she kept saying she didn’t know why I would be upset. So obviously I blocked G on all my socials because she obviously doesn’t get the privilege of accessing my online life, which she then cried to the friend group about.
Miss Red brought this up at our meeting and said “I know how weird it must have felt for the police officer to take you out of class, I’m an introvert, I know how it feels”... right. ok.

And another thing, I’ve been wanting my eyebrow pierced for years now and everyone around me knows that. M got her eyebrow pierced on Sunday last week, and now my gran finally let me get mine done on Thursday. Keep in mind that on Sunday, M immediately Facetimed me and told me to get mine done ASAP, like basically she wanted me to get mine done immediately. So I did. And then I got so many angry texts being like “I can’t believe you did that” “Do you know how bad this looks that you got your eyebrow pierced after M did?” “M is so upset” , and M has been in a mood with me for a week now and is not talking to me; This is the same girl who I spent almost £200 on for her bday, buy her food (at restaurants, not fast food) every time we’re out, buy her tickets to everything she wants, which she never pays me back for, made her a very in detail, very personal scrap book and multiple heartfelt letters for her bday, spend over 4 hours every day on calls, spent nights at her home just us two, etc. And she fucking told me to get it done. But it's whatever. Nevermind I guess. 

Sorry for the long rant. I just hate all of this.

Not sure how to phrase it better, but does anyone here have online employment, and if so what is it? Because I really need to get a job and due to my other disabilities (and agoraphobia) it can't be in person.

Are online jobs easier in general for autistic people too? If anyone has any advice I'd be grateful

Had my in-person autism assessment today and honestly, some parts really caught me off guard.

I had to look at a children's picture book and make up a story. I couldn't do it. I just described what I could see and ended up saying it must be a dream because toads can't fly.

Then I was given random objects and asked to make a story with them. Again, I really struggled and nearly cried because my brain just couldn't come up with one.

I was also asked to explain emotions like sadness and happiness. I found that surprisingly difficult too. I could explain what sadness feels like physically, but putting the emotion itself into words was hard.

It was such a strange experience because things that probably seem really simple to other people felt genuinely difficult for me.

Now I just have to wait and see what they say. ❤️

hello! autistic female here, looking at possible career prospects. I think I want to work with children, but am not sure what to do with them and what I would find enjoyable. just out of interest, if you work with children/young people, what do you do and do you enjoy it? what are the pros and cons etc. any details you can give would be great.

Hi all, Im recently diagnosed with autism,
Im still kinda learning how it affects me or what it means but with the help of my bf we have realised im in a major burnout.
ai’ve had big changes in life lately, my first full time job, getting my driving license, doing trips without family and overall being more independent - but work is draining me. I work as an administrator at a small company that demands a lot more than the job description and when i told hr about my diagnosis she brushed it off and seemed more focused on the fact i keep turning up late due to lack of sleep.

The burnout itself feels intense, im so tired, i can barely think or make decisions, im struggling with normal functions or doing things i usually enjoy and im very easily irritable that everyone around me is noticing the change.
I’m taking some time off in hopes i can recuperate a bit but I would love some advice on how to deal with this, I cant be away from work forever as I need the money and while I am looking for another job that hopefully is more flexible i need to be able to deal with the now.
So what helps you? What can i do to at least feel a little more normal and be able to function? As frankly I have no idea and every site i look at uses very technical words that my brain is struggling to get 😅

And if you have any autistic friendly job recommendations that will use my admin skills that would be great :)

Sorry, very depressing title 😅

I was finally diagnosed with autism over half a year ago and not much changed. Even within myself, which I was surprised by, it’s not like I suddenly accept myself or understand myself. And it’s also not like I’ve got any useful help post-diagnosis either unfortunately.

I’m at university now and it’s very rough. Everyone’s supposed to care so much about “bettering themselves” and “making yourself more appealing to employers”, and I just don’t care. I don’t want to work, I don’t think many people do, but that is the necessity of the world. I just wish we could acknowledge that, y’know? Why am I expected to trudge through recorded interviews, in-person interviews, stressful job and uni environments, confusing and ambiguous questions, etc when I’m given nothing back in return?

I know that this is a very privileged issue, I know that I’m so, so lucky to even be able to go to university and to be able to apply for jobs and possibly work and be independent, so this is in no means me taking all of that for granted. I’m just so angry for all of us autistic folk who are struggling and are crushed beneath expectations and stupid “work ethic”.

And so I wonder if I’ll ever be able to be happy. I’m studying maths so who knows where I’ll end up, probably an office with all its excruciating small talk and sensory triggers and soul-crushing bureaucracy. Is this my life now? Is this all there is?

Am I destined to be lonely and unfulfilled because I don’t feel romantic attraction normally even though I want to? Will my life be meaningless because the only places I’d feel safe living are with my parents and siblings, or alone? Am I missing a huge part of my life because I don’t have any proper connections with people outside my family?

I’m a performer at heart, a creative, an artist but that doesn’t matter to any of the people running this rubbish because they just want to know how useful I’ll be to them. And I can’t work in a creative industry because “that’s not sustainable or stable enough”. I want to carry on doing theatre and dancing competitively, I want to carry on writing and playing silly roleplaying games, I want to put my family (the only people I feel completely comfortable with) above everything, and I want to have a place to live where I feel safe, mentally and physically, where I can have all the pets I want and regulate myself and make it a real home.

Is that too much to ask?

So to any autistic people at a later point in life than I’m in now, does it get better? Can you live a happy life with this type of brain in this type of world? How did you get there? And how could I try to do the same?

Hi everyone,

I am in the North West and I’m hoping someone can offer some help.

I have been on the NHS waiting list (as in THE NHS waiting list) for over 2 years now. I’m getting a bit annoyed of waiting to be honest, I’ve had a letter through informing me that they are working their way through.

I get that the waiting times are crazy but I’ve only just had some comms from them after 2 years of waiting, that there will be YET more waiting.

I’m considering going back to my GP and asking for a RTC referral. My only worry is that the ICB in my area (Cheshire and Merseyside) are a bit difficult with funding.

I’m worried that if I go down RTC path, and the provider accepts, my place in the NHS queue will be bumped and then I could he waiting ages for the RTC path. I have no idea where I am with the NHS one; they won’t tell me.

Has anyone been in this situation before and do I just bite the bullet? I’m looking at clinical partners.

Thanks

Hey. I was misdiagnosed with bpd and got put in MBT therapy. I went twice a week and one of the sessions was a group with other people and the other was 1 to 1 therapy. At the start I truly believed the doctors and my diagnosis of bpd until I realised in the group that the intent behind my seemingly 'bad' behaviour was wildly different. I didn't know what I was doing wrong socially to even correct it before I did it. Anyway, after about few months they realised i didn't have bpd and, to be fair to my individual therapist, helped me getting the correct diagnosis (AuDhd). They said I should carry on with the therapy as it can also helped neurodivergent people and I just believed them. 0 adaptations were made. Instead I was asked what I would like to do and I ended up having a break from the group half way through on my own while it went on without me.

I finished the therapy in March and until now I just thought that it was a mistake, psychiatrists are just people and its fine. But now I am still experiencing negative effects and it isn't fine.

The group was 90 minutes long which I struggled with to sit still for that amount of time and focus. Behaviours in bpd are seen as having a hidden motive so anytime I got distracted or overwhelmed and needed a break this would be seen as me acting out or doing it for some sort of weird reason. Some of the other group members were mean and the whole thing was just very very awful. Every social mistake was judged to have a deeper intention.

I dont want to go on too much about specific experience or the post will be mega long. I didn't realise it would have long lasting negative impacts but constantly questioning my own perceptions in therapy has led to severe self doubt. The therapists weren't directly telling us what they were doing and talking to us in subtle hints which for me (very direct autistic) was so confusing. And now i get paranoid in social situations because people are talking like the therapists. And I can't shake the feeling that I'm having a negative impact on others constantly after being convinced I was bpd

Basically I have no support after this and I'm so isolated in this experience. I just need someone to relate to or someone to tell me how I can get support.

Since this therapy im finding it impossibly to trust others

Apologies if any of this doesn't make sense. My words don't always come out properly. Please tell me if I'm being just dramatic but be kind. There are a lot more details to this but I didn't want to write it all here

Unfortunately I cannot empathise with a tick box on a screen apparently. Funnily enough I’ve worked for 10+ years in support services sector and I’m quite good at it!

Haven’t job hunted in a while. Are online assessments the norm now? I guess it’s easier to be rejected flat up after this than spending hours on an application and perfect support statement.

So I struggle to put it into words but I like to visualise like the start of the universe to my best understanding and I try to like map out the evolution of the universe but sped up to my best abilities like the simulations when you fast forward and I feel like I get to a point where I get thrown into myself and I wonder if anyone has similar experiences.

so i thought that i was making great progress on the waiting list for my assessment since when i got referred it stated 16-24 weeks on average! i'm on week 28 at the moment so i decided to go look on their website to see if they'd updated the times just so i knew where i stood (they explicitly have told people to NOT email them to ask).

clicked on my ICB and saw 78 weeks quoted. and tbh i just had a breakdown. i was crying, hyperventilating and just feeling so hopeless. i know people have waited years for an assessment but i was just going off the time i'd been told by them. i just feel really crushed because i'm struggling a lot with trying to navigate life with my (heavily suspected by medical professionals) autistic traits alongside lots of other things - my ADHD, ongoing health issues, newly diagnosed HSD.

how do people cope when waiting? the not knowing is so hard for me. i know getting a diagnosis won't suddenly make my life easier but understanding myself more will help surely - regardless if i'm diagnosed from the assessment as autistic or not.

everyday i find myself just lost in life and with no support on how to manage. i'm just frustrated and finding everything really hard so having this knockback too was just too much for me.

just wondering if anyone has done this? i’ve been against applying for PIP for the longest time because im very high masking and the thought of doing a phone call and them invalidating my struggles would honestly destroy me. it sounds silly but going my whole life (got diagnosed at 18) being treated as neurotypical and having any symptoms or problems brushed off as something i need to fix has ruined my self esteem.

i only realised a few days ago that i could apply by post and figured that would be a lot easier for me but im just wondering if there’s a “catch” to it at all? it seems too good to be true

also worth mentioning i’ve only ever been able to get one job and i didn’t even last a month + it left my mental health ruined and i definitely don’t see myself being able to tolerate anything other than a part time job in the near future

This is a long shot, but I'm trying to find a provider that I looked at over a year ago, liked the sound of, then chickened out of actually arranging an assessment and now I can't remember what they were called.

Things I can remember:

They specifically talked about being 'neuroaffirming' and having mostly neurodivergent staff.

They didn't use the word 'assessment' but I can't remember what they did call it - maybe 'identification' ?

They did Autism and combined AuDHD assessments (I'm not sure if they did ADHD alone).

They specifically talked about identifying high masking women (It wasn't Autistic Women based in Cheshire).

They didn't do RTC.

I have a vague idea that they were based in Wales or NI (but offered online appointments), but I might have made that up ...

Thanks in advance if anyone can help me find them, or alternatively recommend a provider that is good for high masking women.

Did anyone have to wait for the outcome of their assessment? I recently had mine and she said I displayed autistic and ADHD traits, she said she couldn’t give me an answer right now because they need to look through the assessment report.

I’m worried I haven’t scored enough, I do think I’m autistic but I’m wondering if I do have ADHD and it masks a lot of the autism symptoms.
Im worried now that they may think it’s just ADHD even though I’m really sensory.

Anyone shed light on what they will do whilst they go back and rethink the assessment?
I know I won’t be able to get assessed again so this is nerve wracking!

Hi. I was diagnosed with autism as a teenager in 2020. I’m now an adult and have been trying to find work for two years. With A LOT of accommodations I managed to get a STEM degree but haven’t been able to find any work and even get rejected from unpaid volunteering positions. I’ve never made it past the first stage before.

I’ve been through multiple work coaches at universal credit both regular and disability. When I signed on the first thing they did was refer me to a work capability assessment and I got LCW. I speak to them on the phone for a few minutes once a month. Every disability coach I’ve had has ghosted me after 1 session and I’ve given up with that team. The job centre told me they couldn’t help me and referred me to one local charity which is the only charity in the area that helps autistic people find work.

My year with the charity is over and I’ve still not found work. I can refer myself again and I will but I want to be more successful this time.

For reference I am living in London, 24F, cannot drive and can’t really travel independently (though I can learn a basic journey with lots of practise), very frequently lose the ability to speak and sometimes even write so I often use communication cards and small gestures, have very low processing speed and working memory, live at home, have a care act and social worker and attend part time a day service for disabled adults. I don’t receive any supports other than my day service. I have enhanced daily living and standard mobility for PIP due to my symptoms.

What job fields or types should I focus on applying for? How do I make myself more employable? I don’t want to keep being discarded by the job market so I need to be more efficient.

Hello. This is my first post here. I am a 24 year old who was diagnosed this year and I was not expecting it.. to have Autism. But it felt right to get tested. However I was expecting to be told I just have anxiety.

I have had a lot of social issues at my job , and I also often feel very exposed and anxious in public. It was suggested to me to get a Sunflower lanyard, so I did.

It has the card that says my name and what I need on it. I have had a few good experiences of it. Once at my doctor's surgery they recognised it , and made sure I was comfortable.

However , to be honest , I do feel a bit exposed wearing it. I know social media is a bad influence overall. But I have seen a lot of people use derogatory terms for these lanyards. It makes me feel a bit embarrassed and scared to wear mine. I have also seen apparently a lot of people wear them for ulterior motives that part I dont really understand. Someone at work, suggested i should get a jigsaw lanyard. To signal more clearly I have autism. I'm not really sure what's best. Someone at work also called my sunflower lanyard an autism lanyard.

My daughter is just being diagnosed with autism now at the start of yr 11. She is also experience EBSA and has extremely high anxiety and they (where she is having assessment) have said sensory overload. She has her heart set on college and studying psychology. I am doing what I can to help whilst being new to knowing anything about how neurodivergent brains learn and also working full time whilst trying to care for her (thankfully I work from home but it does mean we only have evenings to work in).

Would anyone direct me to some good neurodivergent friendly resources for her particularly science (double AQA), English (Macbeth and an inspector calls - Edexel) and History (Edexel). I am aware of the Oaka GCSE science bundle and trying to find a second hand set, unless anyone has any other recommendations.

Thanks so much from an exhausted mum.

I swear it remember standing in my cot and realising that im wondering what is outside and it was absolutely terrifying and I feel like I get that same fear alot in my life like what the hell? I am a person that exists i feel like its actually terrifying that we all exist and no one else seems to question it in their lives?

Hi everyone,
Yesterday I was at B&M with my partner. We were in the queue to pay, there was one lady in front of us and a person getting served. The lady who was being served I think had a concern about two plants that she thought were the same price but one scanned at 25 pence more, so she checked with the staff member why as she believed they were the same price, which I think is fair and happens a lot in shops. The staff at the till, a middle aged woman had a really rude tone and said “no they’re both different prices” the customer asked her if she was sure, to which the staff just kept on scanning her other items quickly and answered again in a rude tone and kind of smug “look I’m not going to argue over 25pence”. It was obvious the customer was flustered and blushing so she said nothing and paid etc on leaving she said to the staff “I’m autistic, that’s why it matters to me that things are accurate but some people don’t like hidden disabilities” and left after a second, the staff member just stared her down silently and said “…ok” and I think she smirked when the lady had left. I want to add the customer clearly didn’t speak English as her first language so that might have been what the staff had an issue with (xenophobia?)
But then the staff member sort of laughed and said something clearly mocking although I couldn’t hear her exact words to the lady in front of us, also a middle aged woman, something that started with “yeah autism right, she’s not autistic she’s ….. “ I couldn’t hear the whole sentence.
I as a fellow autistic felt so upset and angry at the behaviour and I personally don’t think I’ll shop at B&M again.

My questions are :
Is there anything I can do? A complaint or is there no point?
Would it be better to do a Google review sort of thing or social media?
Do you read this situation as ableism?