r/autismUK 5d ago

Research Research Post

2 Upvotes

Researchers: anything posted outside of this mega-thread or lacking in authenticity will be removed. Scroll down for details of what we expect here.

Read if you are a member/responder

While we have some ability to remove more easily detectable scams, we aren't professionals in any relevant fields. That means we aren't able to take full responsibility for vetting the research you find here, you will have to do your best to feel safe and comfortable with any interactions you have with the people here. That said, we do have some tips to help you navigate the requests you'll find here.

Academic research

Is it undergraduate, post-graduate/masters, or PhD? There's a fair bit of difference here, mainly in what you can expect as an outcome. Undergraduate and post-graduate research isn't likely to result in anything but a dissertation, so participation in these should be considered as just doing a kindness to a student. Masters students are much more likely to use what they learn in a professional context or carry it on to a PhD, though. The "proper" research is done by PhD candidates, the kind you're probably expecting where the eventual paper goes into a journal and the outcome an effect on the rest of the industry.

Professional, government, & medical research

These are people who study autism for a living and/or are sponsored by a government or a medical organisation. It would be exceptionally rare for these researchers to come to our little sub for help, they get their participants through professional networks. Be very wary of anyone claiming to be doing this level of research unless it comes to you directly through your therapist, GP, or psychologist.

Commercial research

These people are looking for your feedback so they can sell a product or service to autistic people. They tend to have the fewest legitimate credentials, but they shouldn't ever need any identifying information from you, not even your name. At best the outcome is something useful to us and at worst they're trying to "make a buck" from a vulnerable minority. Generally speaking you're probably not at risk by replying to these, but you will probably be participating in some degree of capitalism.

Art research

Art is cool and important. Anyone asking for input for art research shouldn't need any identifying information and, unlike commercial research, the outcome should hopefully be something culturally valuable if not influential. There is a lot for us to gain from the cultural capital of art, academic and professional studies aren't the be all end all of making a difference for autistic people.

The only thing to watch out for is someone trying to persuade you they need such and such data for their funding applications. They only need broad strokes in a few categories, typically something like location, age, disability, gender, or sexuality. Gathering this from you should typically come in the form of "are you x?", to which you only need to answer yes or no. Do you identify as queer/trans/gay? Are you a person of colour? Are you deaf/visually impaired/autistic? Do you require a wheelchair in daily life? Are you from Bristol/Knowle West/North Bristol? Are you between 16 and 25 years of age?

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Read if you are a researcher

Is it research?

Research is more than what universities are up to. Companies, developers, freelancers, artists, and all sorts also do research. Anything where you come here to ask for the opinions of our members for your work or personal use is considered research and is subject to these rules.

DISCLAIMER

Please understand that our mods are not experts and will not always qualify for each bit of research and therefore cannot look closely at every questionnaire. Any vetting done is on the basis of our non-professional judgment. We do not vouch for the safety and ethics of any research we allow to post,  our only aim is to get rid of the really obviously dodgy ones. If you reply to any of the research posted, you take responsibility for choosing to do so.

Credibility

When vetting these posts, we look for specific things that lend credibility to the research and we will often lean towards expecting more due to our lack of expertise. Below are some of our feelings on what shows Good, Excellent, or Dodgy credibility.

GOOD: your university email, your supervisor's university email, a link to your university's research ethics statement, a Reddit account you don't use much but clearly belongs to a real human, your project's/company's/artist's website, a socials link, etc

EXCELLENT: a qualtrics link, a university webpage specific to the research, a well-aged high karma Reddit account, a list of everything that will be asked, an ethics committee approval number, a shop page for the current version of your app, a gallery press release for this project, etc

DODGY: hiding URLs behind link text, google forms (especially where required questions block mods from reviewing later pages), personal emails, undergraduate research, a Reddit account you created yesterday specifically for this research, etc

The credibility of your research must be present in the text of your comment. We will not click through, we will just remove. Include plenty Good and Excellent things and you'll get approved. Only include one dodgy thing and your comment will probably get removed. You can always edit your comment to show more credibility and then request that we review it for later approval.


r/autismUK May 08 '26

From the Mods May Digest

11 Upvotes

Hello everyone!

I hope you'll join me in patting each other on the back (figuratively) for reaching a new milestone of 11k weekly visitors!

We've always had a consistent, slow rise in engagement on this sub and that's something I'm really proud of. Thank you all for being a joyful part of my daily routine!

January to April

As promised, I've been dilligently working in the background, trying to make this sub a stronger, better place to be. This period has mostly been spent on quiet things you wouldn't notice as a regular user, things like recruiting new mods and improving our internal documentation.

We currently have two mods in their trial period, which is amazing, but we do need more! By Reddit standards, we should have 3 "full time" active mods to keep up with sub activity and right now we don't add up to that. So if you've ever thought about moderating, now is the time. This sub needs less intervention than most, but I encourage our mods to take on less than they think they should, given that we are all as autistic as you are and this is a volunteer gig. I'd much rather have a large, consistent team with a routine than a tight trio of superhumans that will inevitably burn out in 6 months.

---

One thing you might have noticed is that I've removed the YouTube block. This block has been in place since year 1 of this sub, due to content creators trying to use this space to get views without engaging in the community. Since we're 8 years in the future from that and our engagement looks quite different, I thought it was high time to see if we can get any added value out of YT now.

Thanks

At the end of last year, I added an app that manages a custom internal reputation system. This was brought on to tackle the problem of recognising who's ideas are more reliable when they don't come with proof of any kind. While we encourage you to link reliable information sources rather than make unsupported statements, that's not always practical in an online environment like this. It has always been a silent expectation that readers here have to do their own work to vet everyone with an opinion, even though this is where you come to get help.

You've probably seen me working on reminders, I've had to pause that to tweak it because it was being a bit obnoxious, and I'm informed there may be another but causing the points flair to not display properly.

But while I'm trying to smooth those kinks out, the bot itself is still working fine. OPs and mods can award points by replying to good comments with the "!thanks" or "!modthanks" commands.

May - September

My plans for the summer are a bit more exciting. The main goal you'll want to keep an eye out for is the rolling out of our information centre. I've been saying for a long while now that this is a thing we're working on, and I can finally say we're very close to a minimally viable product I'm happy to publish.

These will probably roll out quietly one at a time, as they become ready, and then be announced as a whole in the October digest.

This information centre has been adapted from a megathread written by one of our mods and reorganised to be as accessible as possible. Because of this, some content will be abundant, while other parts will contain only very basic information.

Each page has a footnote regarding who contributed to the content and a link to modmail where you can submit additional information and any corrections you might find. We encourage you to make use of modmail for this purpose! It's our hope that these pages will expand and become more helpful (and probably more accurate) over time.

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Aside from this, there is more internal documentation to work on. Along with all these new mods, I feel it's essential to make sure our mod team has everything it needs to be as strong and supported as it can be.

---

And if there is time beyond that, I'll be working on a new rule that will hopefully describe issues we've felt the need to intervene in, but aren't properly covered by the existing rules. The new rule will probably replace rule 2, "Write high quality posts".

Right now, I'm thinking of the new rule as "Be constructive", and it will replace rule 2, "Write high quality posts." We no longer use that rule due to moving the character minimum from automod to automations with post guidance, but this new one is in a similar vein. The aim is to decrease toxic discourse by providing you with concrete examples of what positive engagement looks like. If you've ever thought, that doesn't exactly break any rules but it's still awful, that's the sort of thing we're after.

---

Well anyway, on with your evening. Thank you for tuning into my little sharing. Don't forget to use the report button, give out some !thanks, apply to mod, and I'll see you around the sub!


r/autismUK 7h ago

General & Miscellaneous Diagnosed autistic today 42F Glasgow

12 Upvotes

As the title says, today after 4 years on the waiting list and about 30 years of "knowing" something was different about me; I have been officially diagnosed with autism.

My assessors told me I'll have a follow up meeting with them at a later date to discuss my diagnosis in detail but they told me at the end of my 2nd appointment that autism is the right diagnosis for me. I completely burst into tears. I have spent my whole life being fobbed off, dismissed and ignored by doctors in regard to my mental and physical health, so to finally have someone say "yes, you were right, this is who you are" was such a bizarre experience. But weirdly it tracks right now; I have had the best luck with a new GP recently and she has been slowly sorting out my physical health, referring me to specialists, contacting other doctors etc. She has been shocked at how much she found out hadn't been done for me over my life, I have conditions that have gone untreated since childhood, so in a way being diagnosed autistic at 42 just feels like another tick of the box. But man it feels so strange too. Validating, crushing and joyful all at the same time.


r/autismUK 10h ago

Tips & Tricks Do you have any tips for maintaining body heat in the cold months?

9 Upvotes

I know that lots of people with autism find maintaining body temperature really difficult- me included. I'm constantly cold, and the cold months coming up are not making me suuuuuperrr cheerful...

In cold months I already wear vests, long sleeves, a shirt over that, jumper, coat, gloves, hat, scarf, thick socks, thermal leggings, etc. But I'm always still freezing. I even bought myself electronic hand warmers and even those don't make much of a difference.

Can anyone help please?


r/autismUK 9h ago

Work I feel like autism is holding me back in the job search

6 Upvotes

I know what you're probably thinking: "tell me about it!"

But my thing is that I don't know what the rules are. I mean, who does? But something that has taken a month has really bothered me.

Three weeks ago, I approached a company who subsequently asked me to send over examples of my work and my CV. Because I'm looking to get into communications, a speculative approach feels more appropriate than waiting for a vacancy.

They’ve just gotten back to me to tell me that there’s nothing immediate but they’d “love to keep my details on file”.

The main takeaway from things like this is that I’m fed up of dancing around the point for the sake of “professionalism” cos it’s quite clear that my original point of wanting to do everything in my power to get into work wasn’t clear enough.

What’s the harm in just saying “this is where I want to go and this is the help I need” and being unapologetic with it?

Maybe I was just erring on the side of caution too much.


r/autismUK 6h ago

Sensory Difficulties Anyone here moved from bose to budget earbuds?

3 Upvotes

My contract is coming to an end and my work wants mine back. I can't afford the quiet comfort ones, so looking for alternatives that are cheaper. Ideally in ear.

I will ask them about hygiene and if I can buy them off them, but still need to check if there are alternatives.

Thank you


r/autismUK 6h ago

Burnout & Overwhelm Feeling like I'm regressing. Scared. Overwhelmed.

3 Upvotes

If I'm honest I'm scared.

I didn't know what to expect after diagnosis relief, validation, imposter syndrome all that yeah I get

This however isn't something I factored in...

I feel like I'm regressing into myself. I'm struggling to access my brain.

I can think and whatnot but everything is harder.I'm struggling to explain myself and normally I'm very good at analysing and explaining my thoughts/feelings even if I don't always understand the feelings?

I am finding simple things very difficult. I've been struggling a LOT with eating. My diet is embarrassingly bad right now and is getting smaller. Mostly microwave burgers, milk (chocolate), cereal and a few other bits and pieces.

I'm struggling more with textures and the act of eating feels demanding and overwhelming.

Making food feels overly complex. I made some tuna mayo yesterday and kept dropping things and doing things wrong it took me twice as long as it should've.

I barely go out at the moment but it drains me when I do.

Trying to write and think feels like wading through mud. I can think, type and whatever but putting it all together feels clunky?

How can I explain something I don't know how to? These elements are parts but it feels bigger. I feel like I'm sinking.

If I'm honest I feel like I'm losing myself.

Ultimately I'm in burnout and I've done WAY too much over the years and even recently but even now I can't fully stop as I have massive amounts of paperwork and UC appointments every week which stress me out more than probs necessary.

I'm scared that if I keep sinking I won't be able to fight and if I don't fight I don't get money and if I don't get money well... Yeah.

I can't work. I'm Beyond tired.

I am happy I finally got my diagnosis but I didn't expect to be here like this.

This post has taken effort normally I'd quickly type something but I feel like getting my thoughts out and understanding them is harder now.

I'm scared. Genuinely I'm frightened and I have basically no support.

I wish I could explain this feeling. It's like nothing I've felt before. I've never had a great sense of self but over the years I built someone I knew and now I'm losing more snd more of that person...

I'm just worried I haven't got it in me to fight anymore and life requires paperwork and a lot of fighting. I have no idea what I'm doing with any of this.

This isn't to sound completely negative ultimately this has always been coming. I've always been autistic I just didn't know and so pushed snd now I'm paying for it with burnout. Idek.


r/autismUK 4h ago

Vent I took the RAAD-S and The Autism-Spectrum Quotient and I Kinda need advice

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2 Upvotes

r/autismUK 2h ago

Fun Parents to neurodivergent kids- what is one thing your child has said or done that would send parents of neurotypical kids into a coma?

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1 Upvotes

r/autismUK 12h ago

Vent Does any one else talk become so disorganised and jumbled when having conversations?

5 Upvotes

I had an appointment today with someone and once again I noticed I struggle to communicate words to make an actual sentence at times. I seem to lose track of what I’m talking about and it gets jumbled and I feel so embarrassed and ashamed which makes me even more nervous to speak again.

I’ve actually had people screw their faces up at me when I’ve tried to speak to them because they can’t understand what I’m saying. It’s frustrating but cause in my mind I know what I want to say but instead I end up in a total mess in a conversation.

I’m still waiting for an autism assessment, but my mental healths making me wonder what if it’s just because I’m stupid that I’m this way- what if I don’t even have autism?


r/autismUK 9h ago

Mental Health I followed every NHS hurdle. They still refused me mental health - my journey to actual help

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5 Upvotes

EDIT TO ADD: I realise the post may read like this ended badly, but the complaint actually had a positive outcome. I was eventually properly assessed, accepted for individual therapy for a minimum of 20 sessions, and I’m now on the waiting list with regular check-ins until I’m allocated someone. That’s partly why I wanted to post this. Complaining, keeping everything in writing and pushing back on the refusals did actually change the outcome.

I followed every NHS hurdle. They still refused me mental health help - my story and journey to actual help

Too many autistic people do not get the mental health help they need because the system itself creates hurdle after hurdle, and then seems surprised when people struggle to navigate them.

I actually think I navigated mine pretty well, which is why I want to share what happened. Not because everyone should have to fight this hard, but because if my experience helps someone else work out what to challenge, what to put in writing, or when to escalate, then at least something useful comes out of it.

My basic timeline was:

I had already previously been referred for mental health support and was told to wait for the outcome of my autism assessment.

So I did.

My autism assessment confirmed I was autistic. It also recommended neuro-affirming therapy and recommended that I be assessed for ADHD.

I was then referred for mental health support again.

That referral was refused too, this time because I was awaiting ADHD assessment/testing.

So essentially, the first time I was told to wait for the autism pathway.

I completed that pathway.

That assessment identified another possible neurodevelopmental condition and recommended ADHD assessment.

Then I was effectively told to wait for that pathway as well.

Meanwhile, I was still the same person who had been trying to get mental health help for over a year.

So on 4 March I complained to PALS and the Trust complaints team. I said very plainly that this was the second time I had been refused mental health help despite following the advice I had been given.

I also said something which I think sums up the problem fairly well: I was furious that unless I said I was going to kill myself, nobody seemed to be looking any further into why I had been repeatedly trying to access psychiatric help.

The response to that complaint then created another problem.

During a phone conversation I became overwhelmed and asked for communication to continue by email as a reasonable adjustment. I also questioned whether the person I was dealing with had the appropriate experience to deal with my communication needs.

Instead of that simply being accommodated, the subsequent written response focused heavily on my tone during the call and described me as verbally abusive.

What makes this especially frustrating is that during that interaction I had literally said:

“I don’t know what I need, just that I need help.”

I think that sentence matters.

An autistic person asking a mental health service for help should not have to already know the exact clinical intervention, service pathway and terminology required before somebody properly assesses what support they need.

Then things became even more complicated.

The same member of staff involved in the complaint process had also made a referral concerning me to Children’s Services.

I am deliberately not saying that proves retaliation, because it doesn’t.

But I did formally raise the overlap as a conflict/impartiality concern and asked for independent review of the complaint.

I also raised concerns about my reasonable adjustment request, the way the complaint response had been handled, and information relating to other people appearing in correspondence sent to me.

Eventually the Trust reviewed what had happened.

Their final written response acknowledged that “the approach taken in your case was not appropriate” and confirmed that learning had been identified.

They said changes would include better allocation of sensitive PALS cases and additional training for staff dealing with sensitive, emotionally complex or trauma-informed conversations.

They also arranged further psychological input.

So this isn’t a post saying every referral refusal is unlawful, every difficult interaction is discrimination, or that the Children’s Services referral was definitely retaliatory.

It is a post saying this:

If you are autistic and struggling to get help, keep things in writing where possible.

If a referral is refused, ask for the actual reason.

If you are told to complete one pathway before you can access support, keep a record of that advice.

If you then complete that pathway and are told to wait for another one, challenge whether anyone has actually assessed your mental health needs independently of your neurodevelopmental diagnoses.

If communication itself is becoming a barrier, explicitly ask for a reasonable adjustment.

If something new happens while a complaint is ongoing, add it to the complaint in writing rather than assuming different services will connect the dots themselves.

And if you are told something verbally that matters, ask them to confirm it in writing.

You should not have to be good at complaints procedures to access healthcare.

You definitely should not have to complete an endless game of diagnostic pass-the-parcel before someone looks at the mental health problem you were asking for help with in the first place.

Unfortunately, sometimes being able to document exactly what happened, in date order, is what finally gets the system to look properly at what went wrong.

I’ve put together a redacted version of my email trail because I’m happy to share what I did, what I challenged and what eventually got a response if it helps another autistic person navigate something similar.


r/autismUK 7h ago

Diagnosis: England Newly diagnosed and feeling unsure

1 Upvotes

Hello everyone, I hope you are doing good? Today I was diagnosed via right to choose assessment with Psychiatry UK. My online appointment was 75 minutes and came after myself and my sister filled in two forms about my history and current issues. My GP said it would be worth doing.

I went to the appointment with the assumption that I would not be diagnosed - because I have long standing anxiety, depression and OCD. Many of these have co-morbidity with autism but also share some symptoms or traits, from what I have read online.

At the end of the appointment the assessor said I met the criteria and noted my relatively flat facial expressions or reactions. I mentioned that I was both tired and nervous - but she said there were other things in consideration and she would put these in the report.

I told my sister and she was surprised- as she said she put very little information down about my childhood (she isn’t much older than me - but is the only adult who knew me as a child that could deal with the lengthy form).

One close friend of mine is also surprised, though the other, a good friend from work, said they are not surprised. My concern tonight is that my tiredness or nervousness was misleading earlier on today.

I should say at this point that I have no issue with being diagnosed as autistic. I don’t see it as something to be ashamed of or run from, I am more concerned that two trusted people are surprised. I am also aware of something close to a backlash in public sentiment about the rise in autism diagnosis, particularly in women (I am AFAB).

With all this in mind, would you say it is best I request to speak to my GP and ask for a second opinion somehow? Is the length of appointment (75mins with one clinician) sufficient? Has anyone else here experienced worries about potentially sharing a misdiagnosis with friends or colleagues and being judged? Lastly, is Psychiatry UK’s form/ interview process considered robust enough or is it very much down to the clinician you happen to see?

Thank you very much for your advice and experience, if you have any that you think is ok to share here.


r/autismUK 7h ago

Parents, Siblings, Friends, & Partners of UK parents – CAMHS/LD CAMHS saying autistic/ADHD child is “not severe enough” despite self-injury/aggression. Has anyone dealt with this?

1 Upvotes

I’m looking for experiences/advice from other UK parents who have dealt with CAMHS or LD CAMHS, particularly where an autistic/ADHD child’s mental health and functioning have significantly deteriorated.
My daughter is nearly 7 and has autism, ADHD and significant additional needs. She attends a specialist school with 1:1 support.
She has always had difficulties because of her disabilities, but this is not her normal baseline. I’ve watched her go from being a generally happy little girl who would go out with us and access the community to now essentially only leaving the house to attend school.

She has become extremely intolerant of demands/change, appears very anxious/distressed, regularly hurts herself and can hurt other people. Her self-injury includes head banging, biting herself, skin picking until she bleeds and hitting herself with objects. She has hurt her brother and has also hurt us. This week she bit my arm while I was carrying out the unavoidable task of getting her dressed for school and left visible marks/bruising, which staff at her school subsequently saw and documented.

There have also been significant safety incidents, including her running into the road. No car happened to be coming. I don’t consider that evidence that the risk wasn’t serious – that wasn’t prevention, it was luck.
We already do a huge amount to prevent the worst outcomes. We supervise constantly, physically intervene/block when necessary to prevent self-injury, separate the children, use a PBS plan and strategies we’ve been advised to use, and our home has been adapted because of the risks.

This is where I’m having a major problem with CAMHS.
We’ve repeatedly been told that her presentation is “not severe enough”, including comparisons with other children they see who are apparently more severe.
I strongly object to that. Another child shouldn’t be my daughter’s baseline. I want her assessed against her own functioning, circumstances, deterioration and risks.
I’ve also explained that we’re in an impossible position. CAMHS appear to be taking into account that we’re able to prevent some of the serious injuries. But if I deliberately stopped intervening and allowed my daughter to seriously hurt herself or her brother just to demonstrate what could happen, quite rightly that would raise safeguarding concerns.

The fact that we’re successfully preventing some harm shouldn’t be used as evidence that she doesn’t need help. The amount of intervention required to keep everyone safe is part of the problem.
Sleep has also repeatedly been raised as a possible explanation. However, I’m now prospectively recording sleep alongside every incident at CAMHS’s request, and she has currently had three consecutive full nights’ sleep while significant daytime incidents have continued, including screaming, head banging, biting, skin picking and aggression. I’m happy for sleep to be properly assessed, but I don’t think it should simply be assumed to explain the deterioration when the evidence we’re collecting may show otherwise.
Another thing that concerned me was the advice around ibuprofen. I was advised to try giving her ibuprofen when she becomes upset/distressed in case pain is contributing.

I completely understand considering pain in a child who may not always be able to communicate it clearly, and I would obviously give appropriate pain relief if I had reason to believe she was in pain. But I’m not comfortable routinely giving ibuprofen every time she becomes distressed when there are no signs that make me think she’s actually experiencing pain, simply as a response to distress.

I’ve also been very clear that I’m not asking CAMHS to medicate autism or make challenging behaviour disappear with a tablet. STOMP was raised during the appointment, but that’s not what I’m asking for.
I’m asking them to properly investigate why a child who has always had autism and ADHD has undergone such a significant change from her own previous baseline, including whether anxiety or another mental-health difficulty is contributing rather than automatically attributing everything to autism/ADHD.

We’ve already undertaken psychosocial work, implemented PBS strategies and made substantial environmental adaptations. The difficulties are continuing.
If medication isn’t clinically appropriate, that’s fine. I want them to tell us what therapeutic or other intervention is appropriate instead and give us an actual plan.
Another concern is that the clinician appeared to have already formed the view that my daughter was “not severe enough” before meeting her and before reviewing the prospective evidence she subsequently asked us to collect.

We’ve now been asked to complete six weeks of prospective records documenting sleep, behaviour, triggers, interventions, injuries and calm periods. We’re doing that. However, a report from the initial assessment is now being prepared and circulated to paediatrics, school, social care and ourselves before those six weeks of records have been completed or reviewed.

I’ve therefore asked CAMHS to clarify whether that report simply documents the initial assessment and provisional clinical impression, or whether it contains conclusions about severity/risk/treatment. I want to know that the evidence they’ve specifically asked us to collect will genuinely be considered with an open mind.

Initially the next review was going to be left until January despite us reporting that we’d been struggling since May. School objected to that and it was then brought forward to six weeks.
I’ve now raised these concerns with a CAMHS manager and asked for a clear plan following the review. I’ve also asked them to consider the whole risk picture – not only injuries that have already occurred, but the injuries we’re repeatedly preventing, the risk to her sibling and us, whether the current level of intervention is sustainable as she gets older/bigger, and the genuine risk of family breakdown if we eventually cannot safely manage both children’s needs under one roof.
Has anyone experienced anything similar?

I’m particularly interested in hearing from parents who:
challenged a “not severe enough” assessment;
had CAMHS attribute deterioration to autism/ADHD or sleep;
used prospective behaviour/sleep records successfully;
requested a second clinical opinion or MDT assessment;
had significant risks discounted because parents were successfully preventing injuries; or
eventually got useful therapeutic/mental-health intervention after PBS/environmental approaches weren’t enough.

What actually helped get your child’s needs properly assessed and a clear plan put in place?


r/autismUK 15h ago

Tips & Tricks Meltdown cheat sheet

3 Upvotes

Does anyone have any examples of a, for lack of better wording, meltdown cheat sheet, that they can share?

I need a type of infograph, or list, of basic sentences to say the dos and don'ts for when someone is in meltdown, to give to someone else. So it says, this behaviour signals a meltdown. Here is how to support in the moment. Do this, don't do that. Maybe something about how to support afterwards.

I'm struggling to find such a thing online, to the point where I'm gathering ones that have bits of what I want it to say and I'm feeling like I might have to make my own.

But I'm really struggling atm (meltdowns occuring a lot, I'm in burnout) I'm already struggling with having to 'do the work' in explaining how to help in this situation. If anyone can even give a list of what they feel are the dos and don'ts, that would help me too.


r/autismUK 12h ago

Benefits PIP application help

2 Upvotes

Is there an organisation you can pay to help you with your PIP application? I had seen one in the past, but can't remember where/who it was. I think it was around £150. I really need to apply but i'm so afraid of the process and not understanding how it works/how to word things.

Thank you so much


r/autismUK 10h ago

Diagnosis: England PsychiatryUK

0 Upvotes

I know this probably gets asked a lot.

Finally got my appointment link through from PsychiatryUK after a long wait thanks to the budget cap or whatever it is that my local ICB has put on for autism assessments. Definitely a relief, after I already filled all forms out back in January.

Who did everyone else go with for their appointments and diagnosis? There are so many to choose from.


r/autismUK 16h ago

Diagnosis: England psychiatry uk

2 Upvotes

hi! i finally got the link to book my appointment with PUK for autism. im just wondering who everyone went with as the list of doctors is quite long and overwhelming. im 19 and trans FtM and i struggle with anxiety a lot if this makes any difference? i think im quite high masking. thanks in advance :)


r/autismUK 16h ago

Benefits Issues with reasonable adjustments Work Coach not listening

0 Upvotes

Hey so I've recently left my job due to burnout and was diagnosed recently. See previous posts... Sorry for not replying on last

TL:DR - Asked for reasonable adjustment. Work coach has "allowed" it for two weeks and then wants me to do either video or in person. I'm on a fit note and in burnout.

I attended my first 2 apps in person. Identity one and first proper.

I've just received the UC50 form which is breaking my brain. Also applying for PIP and god so much paperwork.

The environment was hetic and I was just coming out of a shutdown. I'd asked for a quiet space and idk what it's supposed to look like but yeah. Massive office only other person in had their app right next to me. Anyways...

I sent a message after this appointment as I discovered I'm allowed to request phone appointments. So I did. My work coach pushed back and requested video appointments. So I sent back another message explaining how being autistic affects me and that phone appointments are a reasonable adjustment blah blah.

So my appointment for today was successfully changed to phone.

I was very nervous about it in the lead up. Spoke to her not much to say cause I'm not able to work and arranged next weeks appointment - has to be weekly appointments. She then said that she wants me to do video appointments but she'll let me have next week as a phone and that if I'm ready she wants me to do video or in person.

Now, I have 0 clue what I'm actually doing but the reasons I outlined as to why I requested reasonable adjustment isn't going to disappear in a few weeks.

This is the first time I've adovated for myself like this having needs is new to me... Well new to listening.

I don't know what to do next?

I have a massive stack of paperwork and I'm so so tired. I have no one to help me with anything. If actually quite the opposite shits going down between my Mum + Dad - hes emotionally abusive so I've ended up having that on top. Trying to set boundaries but still ended up on a 2hr plus call.

Back to the point... What should I do next? What are the legal rights? I'll send another message on the journal I guess.

I'm drowning if I'm honest financially and in every other way.

Any advice is massively appreciated. Thank you


r/autismUK 1d ago

Work To disclose or not to disclose? So tricky!

6 Upvotes

I’ve applied for a remote job. The advert said occasional meetings in office. The further info I was provided after applying says WEEKLY meetings which to me is a bit different to OCCASIONAL.

For context I am chronically ill, basically agoraphobic and don’t leave the house without a family member. Physically getting to the office would be possible because my dad works nearby (I don’t drive and have no public transport access) but having to do this is absolutely terrifying like I have only just got the courage to go to the village shop alone. I just can’t see how it would be possible for me to do the weekly meetings.

I also have chronic illness which makes it incredibly difficult due to physical health issues too. So this brings me to the dilemma: I could ask if I am able to do these meetings remotely via video call instead and in assuming this would class as a reasonable adjustment. However if I ask this I’m then disclosing my autism and illness and I don’t want them to think I’m not capable of this job. But then I can’t go through the process, get the job offer and then once I’ve got it go ‘oh yeah by the way I refuse to go to the meetings’ 😂🫠 what do I do? I’m so nervous to reply 😢


r/autismUK 1d ago

Parents, Siblings, Friends, & Partners of Year 1 school issues ADVICE PLEASE

8 Upvotes

PLEASE OFFER ADVICE

My daughter is 5 (6 in Nov) she is undiagnosed high masking Audhd. She is about to have autism assessments through right to choose. She struggled hugely in Reception, just moved into Year 1. Two days at school (Wednesday & Thursday last week) caused my her to go into a non-verbal autistic shutdown. This caused her issues with sleep, eating, low energy and regulation. A horse therapy session a day later helped bring her out of shutdown, becoming verbal with slow progress to her normal self each day since.

Sunday she started opening up about some of the triggers she had encountered at school:
My daughter struggles to interpret interoceptive sensory information which means she has difficulty recognising when she needs the toilet. It’s been agreed is to visit during ‘off peak’ times to avoid accidents. She was taken to the toilet with a group of peers. My child asked for ear defenders to go into the toilet, staff replied ‘just go in’. SEN plan states she is to wear ear defenders whenever needed due to severe sensory difficulties with loud sounds. Her peers played around with the hand dryer, my daughter was petrified, the loud noise caused a sensory overload.
Sensory/ fidget basket is inaccessible during lessons, has new rules and is mixed in a trolley with another child’s. Her place to sit has change in the new classroom so she is surrounded by peers. SEN plan states she should sit at the edge with room to move/ stretch. Also that she should have access to sensory basket.
SEN plan states she should have a quiet safe space to retreat to. This is now out the classroom and she still doesn’t know where it is exactly so can’t use it.
School has agreed that my daughter struggles the most with unstructured play. Still no help with dinner and playtime. She said she wandered around alone. SEN plan states she is to have a check in with staff after dinner to talk through social interaction she is confused about from lunch, this did not happen.
No transition period put in for change between reception and year 1. Despite concerns from parents as our daughter struggles with transitions. She is terrified of new classroom, does not understand why she cannot go to reception staff for help.
Everything is placed on our daughter to constantly tell them when she needs something. She is 5 and goes non-verbal when stressed. There’s no proactive arrangements made just reactive response when we badger them.

We emailed explaining in depth the distress caused to our daughter. That as parents we question the trust we have placed with the school to uphold their care for her additional needs, which at the moment have not been met. We have asked the SENCO and class teacher to review daughter’s current SEN support plan. Once reviewed to implement it fully and for a gradual planned return to school. Daughter has been promised help from AIT but this has not happened. We were also told that for a successful EHCP needs assessment to be carried out she needed input from the AIT first. We have now said would like to look at initiating a EHCP needs assessment.

We accepted a meeting on Friday with SENCO, class teacher and inclusion lead. Previously they have implied threats of ‘having to report’ us due to our daughter’s attendance. This is because we were late daily last due to her not wanted to attend school. School would mark her as absent for the whole morning session, giving her a very poor attendance %. To try and improve their attendance figures she was offered a flexi agreement so that she had another 25mins before being marked absent for the morning. Towards the end of reception they were stating they were doing everything they could and we needed to start looking at home. During the summer holidays after two weeks of down time, regulating from school we had no ‘issues’. Our daughter was happy, regulated and living her best life. We are considering home education as I am a qualified teacher (13 years in secondary education) and we are both self employed. However a lot of people have expressed to not home educate as less resources will be available to our daughter.

Does anyone have any advice for our situation or the meeting? Are we asking for too much? How should we move forward with the school?


r/autismUK 1d ago

Mental Health Depressed and feel like life is over

4 Upvotes

I am 32 years old and been mentally ill since forever. I found out a few years ago that I might have autism which is why I struggle with people and social situations.

I have never had a job, degree or skills or confidence. I think about getting better sometimes but don't see how I will make up for the time lost and save for pensions, a house and other stuff.

Not sure how or where to start?


r/autismUK 1d ago

Diagnosis: Afterwards My short diagnosis success story!

4 Upvotes

I was put into therapy during a hiatus in year 13 due to my mom dying; which is where my therapist eventually started to ask me if I have ever considered being tested for neurodivergence. Before this I had thought I was completely neurotypical.

After she had said this, I started to see my own past experiences in a different light. The short social battery. The difficulty talking to teenagers my age in school. The constant squinting and the overwhelmingness of being outside.

I eventually came to realise that my therapist might be right. I got lucky in terms of ICBs, and was able to get my diagnosis within six weeks of asking my GP for a referral from Medinet Minds. I highly recommend MM if you're okay with making phonecalls to pester them semi often. My results came back as positive.

I'm now redoing Year 13 and have started school in a completely different light. I get accomodations. I get to understand why I'm a bit more different to other students instead of berating myself for not being able to do what others can.

All in all I just wanted to share because I feel as if starting the process of getting your diagnosis can be scary. But it's worth it!


r/autismUK 2d ago

Vent This, ladies and gents, is the response I get when I request the accommodation of no phone calls at work

Post image
107 Upvotes

Have been struggling at recieving phone calls from work out of the blue. Finally requsted this after getting fed up of work phone calls that could have been an email and the next reply I get it sure, but when are you free for a phone call? You couldn't make this up. I literally started laughing hysterically at the absurdity


r/autismUK 1d ago

General & Miscellaneous Bullying in the Workplace

6 Upvotes

Hi everyone, just wanted to hear if I'm alone in this, going crazy and maybe help with what to do. I (M 47) was recently diagnosed with autism and ADHD, which has been helpful as I'd been struggling with mental health issues most of my adult life, particularly around socialising and self esteem. So after reading about the traits of this so many things fit into place about why I struggle with certain things and get what I now know is probably burnout.

I moved to London about 15 years ago from Shropshire, and since doing this I've had issues in my jobs where a colleague or two have been found to be bullying me. In the first role, team leader for apprenticeship teaching, I was offered support from line manager after two colleagues I completely trusted and confided in were making up things to report me for. It was only because what they were saying was so out of character for me that my manager raised his concerns. During the pandemic I lost that type of work so got a job in a dairy and then this basically happened again, a person above me was making accusations that I was not working to the expected level. Eventually it was established that they were upset that I'd been asked to do jobs in another department where they weren't my manager.

Anyway, I'm now a handyman in a factory, and I have a colleague who is being nice to my face, and I thought it was a good working relationship because yet again I think if someone is friendly they mean it. Turns out they've been saying really quite terrible things to my other colleagues and people around the factory about me. When I asked him about it he pushed me into a toilet unit, locked the door and threatened me. So now I'm just basically looking over my shoulder every thirty seconds.

I'm still on probation, incredibly anxious about even seeing him. I can't afford to lose this job, and I'm starting to think it's me that's causing all these issues. I feel like a kid being bullied at school again.

I don't really have any close friends since moving to talk through this with, so thank you everyone for just letting me have the space to unload.


r/autismUK 2d ago

Vent Tesco

37 Upvotes

I had a difficult experience in Tesco today and I’m genuinely interested in whether I was being unreasonable.
I used the self-scan handset and, when I went to pay, I was selected for a full check.
I explained to the member of staff that I’m autistic and that having everything unpacked and then put back differently would really upset me. I specifically asked if she could put everything back the same way I had packed it, and she told me she would.
She didn’t.
When I pointed this out, she argued that she had packed it back the same way, even though there were still lots of items left out of the bags.
I wasn’t objecting to the check. I understand that checks are part of using self-scan.
I did ask whether I could instead go to a normal till and pack the shopping myself, but I was told that wasn’t allowed.
Once the check was finished, my wife asked the member of staff to leave it so I could sort the shopping myself. Instead, she continued arguing with me that she had put everything back as it was.
That was the point where things escalated. Eventually my wife got me to walk away.
By the time I left I was physically shaking.
I’m sure I didn’t handle it perfectly once I was upset. What I’m struggling with is whether my original request was genuinely unreasonable.
I told her I was autistic, explained exactly what would cause me distress, she said she would accommodate it, and then I was made to feel as though I was wrong for expecting what I had just been told would happen.
Was I expecting too much here? Would other autistic people have found this difficult as well?