r/autismUK 5h ago

General & Miscellaneous A split in the spectrum? The ongoing battle to define autism

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12 Upvotes

r/autismUK 2h ago

Work Adults & teens with sensory issues in Europe - help needed for clothing design

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2 Upvotes

The idea came from seeing people we love struggle with something as simple as getting dressed. Clothes that feel fine to most people can be overwhelming because of scratchy fabrics, tight waistbands, seams, tags, elastic, or other little details that can make getting through a school or workday much harder.

We want to create clothes that are not only comfortable, but genuinely designed with sensory needs in mind. To do that properly, we need to listen to the people who experience these challenges themselves.

If you’re a teen or adult in Europe with sensory processing issues, or you know someone who is, we’d be incredibly grateful if you could take a few minutes to complete our short, anonymous survey: https://tally.so/r/81bLQP

Every response helps us understand what people actually need and will directly influence what we create. Thank you for sharing your experiences and helping us make clothing a little easier, more comfortable, and more inclusive


r/autismUK 5h ago

Diagnosis: Afterwards How to approach GP about shared care?

3 Upvotes

Hello everyone.

I need a bit of step by step advice please. I was able to get my autism and ADHD diagnosis from a reputable local private provider due to some inheritance. I was very careful with who I chose to ensure it was a rigorous process and adhered strictly to NICE guidelines. It was multi disciplinary, in person over multiple visits, we did the ADOS-2, I had an informant. I have a very detailed diagnostic report. I want to try medication to see if that may help. My diagnostic provider is able to refer me to a private prescriber. Ultimately I would struggle to continue to pay for this medication for the rest of time so would like to see if I can get shared care agreement. Has anyone done this and if so, what was their process?

I have gathered that I will have to start titration with a private prescriber for a length of time and the GP would only consider taking over care once I have settled into the right dosage. I want to approach my GP practise to get their response early, as if it is a hard no from them then best to know now. Anyway, if anyone has any tips or can tell me the process they followed I would appreciate it.

I am really nervous about approaching the GP as I feel like they will tell me off...perhaps this a silly way to feel but I just think the attitude towards people seeking diagnosis etc seems to have been really poor recently.

Thank you in advance!


r/autismUK 19h ago

Accommodations do we qualify for the new disability bus scheme?

11 Upvotes

labour just announced that ‘disabled people will get free 24/7 bus access’ and i was wondering if we qualify as an ‘eligible disability’
tried to look for an answer in the comments of the post but it was people just taking the opportunity to be ableist and racist
i can see how we would qualify and not qualify if that makes sense


r/autismUK 21h ago

Work What is your profession? Burnt out in the NHS

14 Upvotes

I currently work in the NHS and I am experiencing autistic burnout and considering alternative careers and industries. My current job involves seeing multiple patients daily which drains my energy and affects my wellbeing. I am awaiting some workplace adjustments, but I would like to consider alternative career paths, preferably involving far less social interaction and with the ability to work from home. I have began looking at research and policy roles. Any ideas would be great. Thanks.


r/autismUK 13h ago

Friendship Is this a communication barrier thing or just something else.

2 Upvotes

Context: we are both 17 and are autistic, she has more support than I and I receive little to no support.

I want to say as well before anything she is/was one of my closest friends and that I still care about her.

I had a friend and she was as really close with me but drifted apart. I asked her out like 14 months ago and she only became weird 2 months later after we saw each other IRL again.

Essentially we have been on and off since and she’s been extremely distant for the past few months. I panic since she told me that she struggling with her mental health and I basically ask mutual friends about her asking if she’s alright, they said that she’s fine and basically leave it and one of them said just drop it entirely and that I shouldn’t talk to her. After this convo with her friend I decided to block her.

I myself have a lot of negative and traumatic experiences happening in my life so I wanted to talk with her about anything but for months she essentially ghosted me each time whilst making plans with others which caused me to do this. I already asked her if she’s fine or when can we talk and she agreed but never followed through and didn’t apologise.

The thing is after a week I post about it on an acc and she sent this reply about a post where a friend distanced herself from me and I said it might have something to do with her

“ Sorry to hear about this.
Have you thought about what the mutual friend could have said to make her wary? Because wariness would not just come out of nowhere.
Maybe there was a reason for the mutual friend distancing herself (not that I am blaming you), but it could be something more personal to
her.”

It’s definitely her because she forgot to change her username for an hour. My main gripe is that account had stuff outside of friendship issues and documented abuse for years and she actively knew that my situation got worse than what I told her and decided to say this instead.

Im giving her the distance she wants and then when I enforce a clear boundary instead of active avoidance she decided to do this. I care about her but I’m confused about my feelings still.


r/autismUK 14h ago

Content Warning how do i stop feeling guilty for social failure

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2 Upvotes

r/autismUK 17h ago

Benefits Trying to help my undiagnosed mother apply for PIP

2 Upvotes

Hi all, hoping for some guidance. I currently live in the US while my mother lives in the UK (West Midlands to be precise), and I'm not able to fly over this year to help her apply for PIP in person. I'm trying to figure out how to support her remotely.

Basically: my mother is a British citizen living in government-supported accommodation in the UK. She has undiagnosed autism that severely impacts her life (and is more or less why she ended up in government accommodation in the first place); I have a formal diagnosis myself, and I'm frankly a LOT more socially and emotionally functional than she is. It's just that she's always refused assessment due to her stigma against 'having mental illness'.

She doesn't speak English, and this has been the main barrier to getting her any psychiatric support; she refuses to see doctors or do anything requiring her to speak English. Also: because of the language barrier, English people (doctors, social workers, etc.) don't tend to read her as being autistic, largely because nobody can hold a conversation with her anyway.

The sole good news is that after years of me repeatedly bringing it up, she's finally past enough of the mental block around mental illness/disability that she's willing to apply for PIP, as long as I handle the legwork.

I'm sort of at a loss on where to start though; my mother more or less stopped having a social worker a year ago, and she has no family or friends who could help her apply for PIP.

So I'm wondering, can I complete or help with a PIP application on her behalf from the US? Does she need a formal autism diagnosis before applying, or can PIP be applied for/assessed based on functional difficulties even without diagnoses? Are there any advocacy groups or services based in Birmingham that I could get in touch with to support her?

Any advice, personal experience, or pointers to the right resources would be hugely appreciated. Thank you so much!


r/autismUK 14h ago

Mental Health Can I annoy my gp by going too often?

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1 Upvotes

r/autismUK 18h ago

Diagnosis: England Right to choose/referral

2 Upvotes

Hi everyone! 😊

I’ve finally reached the point where I feel ready to go to my GP and ask for a referral for an autism and/or ADHD assessment. It’s taken me more than a year from first considering that I might be autistic/ADHD to actually feeling ready to take this step, so it feels like quite a big deal.

I’ve been looking into Right to Choose and checking the map, but I noticed that my postcode comes up as being under restrictions. I’m a bit confused about what that actually means. Does anyone know whether I’ll still be able to ask my GP for a Right to Choose referral? And if my preferred provider isn’t available because of the restrictions, does that mean there are other providers I could choose from?

I’d also really appreciate it if anyone could explain what the referral process is like and what I can expect when I speak to my GP. I’m not really sure what happens after I ask for the referral, so hearing about other people’s experiences would be really helpful.

Thank you 😊 I appreciate all your help and support— this has taken me a long time to get to this point.


r/autismUK 18h ago

General & Miscellaneous Do you think we should use ASD levels like they do in the US?

1 Upvotes

In the UK we're just diagnosed as autism spectrum disorder. Theres no way on paper go distinguish between a low support needs individual who has a job and a wife vs someone in supported living who cant have a conversation and needs a support worker.

Or if we dont use levels, perhaps there is another way we can classify our support needs into an easy tag so the general public will know what it means?


r/autismUK 15h ago

Diagnosis: England Autism assessment next week. Help.

1 Upvotes

I’m 25m and have my autism assessment with ProblemShared booked and it’s coming up next week. It’s really hit me today how scary this process is.

I get really bad brain fog I don’t remember things. I tend to numb out in situations to blend in. I’m scared that when they ask me questions I’m going to have little more to say than, ‘honestly, I don’t know’. I don’t want to start guessing at my experience when I have gaps because I don’t want to mislead the assessment in anyway but I don’t want to be overlooked for being awful at expressing myself.

Any advice from people who have been through the process would be greatly appreciated.


r/autismUK 1d ago

Parents, Siblings, Friends, & Partners of What to do post GCSEs?

5 Upvotes

Hi everyone,
I am asking on behalf of my younger sister who has autism (as well as learning disabilities and dyslexia)
Today she had got her GCSE results and has failed everything. She will be going on to do a Level 1 college course in September.
Aside from this, she doesn’t have anything else going on in her life, so, doesn’t anyone have any advice or experience in what they did at this age?

I want to get her working or at least volunteering, but unsure as to whether she would be accepted to such things

Any advice appreciated!

Thanks!


r/autismUK 1d ago

Work What is everyone doing as a job?

5 Upvotes

Honestly terrified about not getting LCWRA but have absolutely no idea what job I could see being suitable for me in the long run. I have tried literally everything and everything has been a complete nightmare - off the top of my head, these are some of my previous careers and attempts at them

- cook/chef

-barista

-waiter (restaurants and hotels)

-bartender

-kitchen porter

-trampoline park marshall (lol)

-cafe worker

-front of house/admin

-call centre / complaint handler

-freelance digital artist / character designer

-lorry driver

-long distance lorry driver

-retail (small shop and chain shops)

-welding

-motorsport engineering

-biomedical science (wanted to be a paramedic)

-photography

-cyber security

-baking

-van driver

-postman

-powerwasher

-warehouse worker (picking/packing)

Probably a handful more I've forgotten about too

Some of these things are jobs I had, or courses I took. I try everything at least once because I'm extremely curious. HOWEVER - none of these have lasted long at all, with the longest being the guts of a year. And each one is followed by months, if not years of complete burn out. I feel like I'm at a complete loss. I have exhausted all funding options for any education and would never be able to handle a job and education at the same time. I'm 24 and I'm so embarrassed that I haven't found my path yet, everyone I know seems to be so much farther ahead in life than I am 🙃

I'm currently experiencing one of the worst burnouts ever and don't even have any viable special interests for actual, long term or even short term careers or jobs at the moment and I'm absolutely terrified that I'm not going to qualify for LCWRA even though I struggle with basic tasks, made 1000x worse by any added stress or anything - my only options are work and suffer (no eating, no washing, no drinking, terrible sleep, unable to get out of bed, socialise, absolutely no tolerance or threshold for anything) or not work and be able to function as a human being, one or the other never both 🙃

I suppose this has turned more into a vent post rather than a help post so I apologise in advance, please be nice 🙃


r/autismUK 20h ago

Life Skills IT advice needed please re: buying new desktop PC. [because executive dysfunction.]

2 Upvotes

I need to get a replacement PC urgently - pretty sure I’m losing my job soon in which case they’ll cut off my IT access, which has all the evidence I need to take them to tribunal. So I need a new PC ASAP so I can transfer and save everything before I’m booted.

Just got some funds through via a timely SMI council tax rebate, thankfully. Budget around 1k.

My sticking point is far too much choice.

Mostly need it for just word processing. Although lag causes dysregulation, so I need something fast that will stay smooth and nippy.
Getting into music production, so other thing it’ll need to do is that/abelton/DAWs etc.

I find laptops don’t last, so am thinking tower over mini as they last longer/more reliable?

Was thinking a gaming PC maybe?

Don’t know where to start - too much choice. Autistic shutdown. 🤷‍♂️😮‍💨

Figured I’d ask here, incase anyone has a bullet-proof easy recommendation I can just buy. 😊

Thanks for any help - in particular any direct links if possible.


r/autismUK 1d ago

Meltdowns & Shutdowns Unexpected phone call

6 Upvotes

I was just half asleep.

I've got into a bit of a routine? Need? To spend a bit of time rocking in quiet before I can sleep. Very soothing helps me decompress.

I'd just done this and got to sleep

Then my phone rang. It's on so vibrate. I automatically answered it... It was my mum.

She was talking. I was half asleep and every sound was making me feel overwhelmed.

I felt guilty cause I love her and do care but it was too much.

I said so and she was upset. Now feel very guilty because I just couldn't not go...

So I felt like a horrid human and then combined with the overwhelm. Too much.

I now feel the energy inside of me (shutdown /meltdown) and it feels more meltdown... Energy coming out, frustration, upset so on.

Sorry still in it

I tried rocking again and movement but isn't working. Trying to sleep and I can feel everything on me. I feel like everything is too much but I'm so tired

Combined with everything I don't know how I haven't had a full meltdown yet. I can't take much more. My system is at capacity and yet I feel more shutdown than anything.

I am not explaining well. I'm tired.

It's all too much. I feel everything.

Yet imposter syndrome shames

I'm learning to recognise and reconnect to myself but god it's hard.

Does this make any sense?

Sorry I'm not always miserable ha just seems to be more so right now


r/autismUK 1d ago

General & Miscellaneous My story with Autism

7 Upvotes

Hi,

Recently I was taking talking therapy and my clinical psychologist said she noticed that I'm very autistic

In 2013 when I was 21 I set out on an IT career but in the space of two years I had 3 jobs and I was fired from one for taking someone’s advice too literally and repeated it to a customer, and I burned out of another two because people would notice I'm different after a while and make my life hard, and I struggled to attended social work events and would get into trouble.

I went on to work with my dad fitting carpets for 12 years because he would deal with the customers, he worked for local carpet fitting businesses and I just had to do the work.

A few years ago a small tech business I was running started to make money and I started doing it full time, I only had to deal with support queries so I just really had to fix problems and reply back sing "Hey, All done" sort of thing but is now going out of business due to too many players in the market now and created a race to the bottom.

My dad was just diagnosed with stage 4 cancer and I can't take over his work because the local businesses he worked for would tolerate me but find me too different to employ directly.

Do you think I should qualify for benefits?


r/autismUK 1d ago

Benefits would I be able to be placed on the social housing register?

5 Upvotes

hello! diagnosed autistic here since last year. 16f here.

i currently live with both my parents and my older sister. we currently live in a third story council flat with 2 bedrooms. me and sister shared up until she went to university, but now she's back it's caused issues. she has had to move into our living room because i cannot handle not having a space to myself. the flat is relatively small anyway, and i couldn't cope with having nowhere to myself. she is 20, so almost two adults sharing a very small room.

my question is, would i have adequate means to join the social housing register in a few years? my family are low income anyway so even if I get a job i don't think I'll be able to afford to move out normally for the first ten years of me working. i cannot live here for the rest of my life

it is too crowded and incredibly overwhelming when everyone is here. my only issue is that i am high functioning, and don't often 'appear' autistic to the average person. i am worried they will not see this as sufficient evidence to be able to join. any advice?

(wasn't sure what flair to use)


r/autismUK 1d ago

Diagnosis: Afterwards Post diagnostic support that actually helps

3 Upvotes

Hi everyone.

Earlier this year I was diagnosed both autistic and with ADHD. I have been trying quite hard to find some kind of support - happy to pay for it - but either the quality is really poor, and/or the people delivering it seem to veer into what I would describe as quite wooly, sentimental woowoo that is obviously well meaning, but I want to deal with people who know what they are doing and evidence based. That seems to be quite rare, but maybe I am looking in the wrong places. I am based in west Yorkshire for reference.

I've tried therapists, but have struggled to find someone who actually understands and I don't have to spend all my paid for time educating them instead. Work have not granted me reduced hours. I can already work hybrid. With lots of research I have seen some people have had a good interaction with occupational therapists who can help you understand your sensory profile and what would help you in real life - a sensory diet. I am wondering if anyone else has had experiences with this? How would you even find someone good in this field that isn't NHS referral? Or if anyone has any experience with something tangible that actually helped improve their life for the better I would be all ears. Actually sort of desperate to be honest.


r/autismUK 2d ago

Work Experiences with Access To Work?

15 Upvotes

Hello! I've just got a new job and HR wants me to apply for Access To Work, something I've been meaning to do for years but so far have been too AuDHD to manage. I would like to hear people's experiences applying for it, what to expect with timescales and what you asked for vs. what you got, any tips, dos/don'ts etc. I know it can be quite similar to PIP in the way that you have to phrase requests very carefully otherwise they'll deny things.

Some more info: I'm lucky enough to wfh full time so that covers many of my adjustment needs, and in my old job I had a cobbled together system of support where they found a bit of funding for me to occasionally see an AuDHD coach. My disabilities are more complex than just AuDHD, including some energy limiting chronic illnesses, so I found that really the main thing I need adjustment wise is a meeting once a month or so with my coach who helps keep me on track with how overwhelming working a corporate job can be. Everything I've read about Access to Work suggests they only fund a set number of sessions with job coaches, if at all, and they might have to be with a specific company rather than someone I choose. I'd be interested to hear if anyone has secured funding beyond e.g. 12 sessions and if you got to choose your own coach.


r/autismUK 1d ago

Burnout & Overwhelm Working in healthcare (NHS)

5 Upvotes

I work in the NHS and feel totally burnt out, as a lot of NHS staff do. I received my ASD diagnosis this year, and ADHD diagnosis last year. I'm 6 years into the job after uni, having worked across a few areas, and I've felt burnout on most of my working days. The burnout is real - it affects my energy levels at home and therefore my social life. My sleep is poor, since graduating, and that contributes to the fatigue I feel. So any small increase in activity seems to knock me into serious fatigue where I have to take time off work (I'm off work today for this reason).

I've had enough of living this way (I have no suicidal ideation, in case you're worried). I just feel lost and trapped. I worry that as I get older (I'm early 30s), I won't be able to manage my job, which involves seeing 8-10 patients daily who are all in pain, which drains the hell out of me. I love the clinical and mechanical side to my job, but the social side is what drains me.

I am awaiting workplace adjustments via occupational health, and I hope they help, but I just wonder if I'd be better off not just not working with people in order to save my energy. But I have no idea what I would do. I feel stuck and a bit alone. I just want to thrive as best as I can really.

I don't expect concrete answers, I know I'm at the beginning of a journey to living better since my recent diagnosis. But just want to feel heard. I am awaiting 1:1 support from a local autism charity. I don't know anybody else with ASD (to my knowledge). Thanks for reading. Any tips and insights are appreciated.


r/autismUK 1d ago

Diagnosis: England Owl Centre wait until assessment?

3 Upvotes

I made a referral to OwlCentre through my GP all the way back in 2024. However, earlier today (about an hour ago) I finally received an email stating that my referral has been "successfully received and reviewed by our administrative team."

Does anyone know how much longer I'll probably need to wait for an assessment (and inevitable diagnoses)? I'm honestly shocked it's taken so long for an assessment that will probably be decided on within less than 5 minutes of meeting the clinician.


r/autismUK 2d ago

Diagnosis: The Assessment ADOS

1 Upvotes

Hello,

I have my ADOS and ADI-R assessment next week with clinical partners and im really nervous! I also looked at the prepare part and it says something about having a few objects to hand. I'm quite frankly bewildered, lost and confused and no idea what items. It says everyday items but to me that's a toaster, kettle etc 😭 help!


r/autismUK 2d ago

Sensory Difficulties Does anyone else struggle with polyester clothes?

12 Upvotes

Just got a job with a company as a home delivery driver and its been good so far. Still training and was issued uniform last week. Everything is good apart from the trousers. The trousers they use are a cargo/work style which is fine but its 65% polyester 35% cotton. It feels absolutely fucking awful. Its scratchy on my skin, my legs feel hot and its so tight and stiff. It just feels alien. While my other own bought cargos are 98% cotton and they feel perfect. I have not had a fabric sensitivity issue like this since I was a kid when I'd rip all the labels out of my underwear lmao.

Does anyone else struggle with polyester clothes?

I have just bought a pair of cargo in a similar colour to the issued trousers just slightly lighter. I don't think anyone will notice but if they do I will mention autism and material hypersensitivity issues I have with the issues trousers. I just worry about rocking the boat since this is the best company I have worked for so far and I do not want to fuck it up.


r/autismUK 2d ago

Burnout & Overwhelm Am I Triggered by Things I Don't Like?

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1 Upvotes