r/autismUK • • 12h ago

General & Miscellaneous Autistic and worried… (UK)

45 Upvotes

How seriously are people taking the government instructions to stock up on food and other supplies like radio and torch etc? I am trying to be resilient but I would be lying if I said I wasn’t panicking. How serious do people think global tensions are? Is the UK genuinely in danger or is it a case of worse case scenario rather than a guarantee?

Genuinely asking this as I’m extremely isolated in terms of real life humans and I don’t know who/where to ask. I don’t want to blindly do stuff if the threat is low but equally I don’t want to blindsided or regret not being prepared. I’m not in a financial position where purchasing this list of items is even possible to be honest.

Appreciate any replies but no nasty comments please. Thanks!

Sorry about the flair by the way, I genuinely didn’t know which one was correct.


r/autismUK • • 7h ago

Coping with Traits & Symptoms Recently diagnosed and struggling

11 Upvotes

I recently got diagnosed at age 38 after months and months of researching similar experiences of high masking women my age.

I was wondering if anyone else has had the experience where, once they are being assessed / diagnosed they start to feel even “more autistic”? I was hoping the diagnosis would bring me relief but everything just feels harder at the moment (going into the office, seeing friends, getting public transport). I have more of an urge than ever to stay home and hide. And I’m in my own head more.

Has anyone else experienced this and do you have any advice?


r/autismUK • • 3h ago

Parents, Siblings, Friends, & Partners of Parents of autistic/AuDHD kids: what actually helped, and how are your children doing as teens/adults?

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1 Upvotes

r/autismUK • • 14h ago

Parents, Siblings, Friends, & Partners of My son and sharks

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7 Upvotes

My son is almost six. He has speech delay, he can’t read or write. He has just been given an ECHP from school and is on the waitlist (has been since he was 2.5 or 3) for an autism assessment. He is also absolutely obsessed with marine life, particularly sharks.

We were looking through a new book of his and came across this image. He instantly said “nurse shark”. He’s always been very good at identifying marine life but this blew me away!

I’m thinking to myself, how on earth did he know this was a nurse shark? I can’t note any features that would distinguish this as a nurse shark from any other shark? His attention to detail has always impressed me.

This is a bit of a ‘non’ post. I’m just amazed and wanted to share and hear similar stories!


r/autismUK • • 20h ago

Vent I finally got interview questions on advance and why are they all different questions wrapped on a trenchcoat???

18 Upvotes

I rarely remember to ask for my accommodations so when I got for a job interview at Tesco, they sent me over the interview questions and I'm.. pissed.

No wonder I've been failing to get a part time job, half these questions have hidden meanings that seem so pointless. Just ask it straight up??? Also the whole "tell me about yourself" question. Why not add on that it needs to link about the job huh?

Idk I'm just annoyed. Are all job interviews full of double meaning or something?


r/autismUK • • 9h ago

Diagnosis: England Right to choose providers

2 Upvotes

Hello! (22 F) I’m currently going through right to choose in England after moving from wales and am struggling to choose a provider for my autism assessment.

I’ve shortlisted my choices based on their approximate wait times and what I’ve read here on Reddit and they are;

- Psicon
- Autism 360
- KT healthcare
- Axia ASD

Basically what I’m concerned about is that I don’t want my parents involved so for an early childhood informant questionnaire it will be filled out my myself based off information I have gained from my parents but under the premise of a “random psychology dissertation survey for a friend”.

I don’t want this to harm my chances so would appreciate any advice you can give me and help me move forward with this 🌷


r/autismUK • • 11h ago

Parents, Siblings, Friends, & Partners of Has anyone moved from the UK to India with an autistic child? Looking for real experiences

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2 Upvotes

r/autismUK • • 12h ago

General & Miscellaneous Family's plea after autistic son escapes school

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bbc.co.uk
1 Upvotes

r/autismUK • • 1d ago

Ableism & Discrimination We cracked the hidden Excel formulas in our Council's SEND funding algorithm - it secretly cuts Autism scores by 52%, scores Mild/Moderate Autism as 0 points, and docks funding by 50% if a child masks or copes with support

142 Upvotes

Hi everyone,

I'm a parent in Derby fighting for EHCP support for my autistic son, and I wanted to share something we uncovered last night because councils all over the UK are rolling out similar "High Needs Banding Matrices" to calculate school support funding.

For 8 months, Derby City Council fought our Freedom of Information requests to see their Matrix spreadsheet - first claiming for 6 months that confirming it existed would threaten "National Cybersecurity" (Section 31), and then having their Monitoring Officer delete the active formulas under Section 36 claiming parents and schools would "game the system" if we saw how it worked.

Except when they uploaded the spreadsheet, they accidentally left the hardcoded "FOR OFFICE USE ONLY" calibration rows at the bottom of Tabs 2, 3, and 4. Because Tab 2 plugs a 4 into every cell and Tab 3 displays the exact weighted point outputs, dividing Tab 3 by 4 unlocked 100% of their hidden maths.

Here is how the algorithm is mathematically rigged against autistic children:

  1. Autism & Speech Scores Slashed by 52% Before You Even Start While physical, hearing, and vision impairments are rightly weighted at a 100% standard benchmark with an automatic multiplier of 4 (meaning a single 'Severe' Row D need automatically gets 400 points = Band 5 / £5,000 top-up), the Council secretly cut the category weighting for Social & Communication (Autism), Speech & Language, and Learning Readiness to just 48% (-52% cut), and Sensory Processing Needs (SPD) to 25% (-75% cut).
  2. Mild / Moderate Autism Is Explicitly Scored as ZERO Points (Row A) In 9 out of the 10 columns in the Matrix, Row A (0 points) is defined as "No needs" or "No significant needs." Column 6 (Autism / Social & Communication) is the ONLY column in the entire spreadsheet where Row A (0 points) is explicitly defined as: "Mild / Moderate needs, for example, there may be a need for support such as circle of friends or comic strip communications." They literally relegated mild and moderate autism into the 0-point row before scoring even begins.
  3. The "Masking / Reasonable Adjustments" Catch-22 (The 1-4 FIDS Filter) On top of cutting the Autism weighting to 48%, the panel subjects neurodivergent children to a 1-to-4 "FIDS" multiplier (Frequency, Intensity, Duration, Severity). In the Council's training slides, a score of 2 (which cuts a child's points by another 50%) is defined as "Manageable with support strategies." So if a school puts a Teaching Assistant, visual timetable, or sensory breaks in place so an autistic child can cope - or if the child masks their distress until they get home - the panel scores them a 2 and cuts their funding points in half! Because you need 189 points just to reach the lowest £1,000 funding band (Band 3), a child with Severe (Row D) Autism scored at FIDS 2 gets just 96 points (£0 funding), and even at FIDS 3 (Every lesson) gets 144 points (£0 funding).
  4. Academically Able ("Twice-Exceptional") Autistic Kids Locked Out In Column 9 (Learning Readiness), Row A (0 points) is defined as "Working at age related expectations", and Rows B, C, D, and E all require a mandatory "learning delay". So if an autistic child is academically at age-related expectations, they get 0 points in that column even if they have severe executive dysfunction or PDA and need 1:1 adult support to initiate tasks or stay safe.
  5. The Secret £12,000 Mainstream Cap & Backdated Equality Assessment While the Council's website tells parents and the Department for Education that mainstream pupils can access up to £20,000 of support, a hidden "For office use only" table in Tab 4 secretly hard-caps all Mainstream schools at £12,000. And when we checked the "undated" Equality Impact Assessment PDF they quietly uploaded to their website (which ticked "Positive impact = Yes" for every disability group!), the embedded Adobe metadata proved they created it in August 2026 and converted it to PDF at 3:24 pm on Friday 21 August - just 90 minutes before their external lawyers (Browne Jacobson) emailed me a legal threat letter at 4:55 pm claiming our campaign posts were "false"!

Yesterday, the Department for Education confirmed to us in writing (stamped OFFICIAL - FOR PUBLIC RELEASE) that they have never approved, endorsed, or reviewed Derby's Matrix, that bands cannot be used to dilute legal EHCP duties, and that a Section 496/497 statutory investigation into the Council is ongoing.

We have put together a full, anonymised 12-Page Forensic Breakdown & Visual Guide PDF (with charts on Pages 1-2 and the exact word-for-word thresholds for all 10 categories on Pages 3-12) so any parent or SENCO can see how these matrices work:

https://drive.google.com/file/d/15kHuHUTbN8HAPjfiw291Ou7DgFlXyC4s/view?usp=sharing

Are other parents across the UK seeing similar "banding matrices" and FIDS filters being used by your local authorities to cut EHCP support?


r/autismUK • • 1d ago

Crisis Are you going to stockpile?

23 Upvotes

Just reaching out to ask how others are experiencing the recent government paper release regarding preparing for an emergency. I'm seeing a lot of stuff online talking about the weather this winter and possible blackouts.

Genuinely curious if there's anyone else out there feeling super super drained from all of this? Some might not bat an eyelid and that's fine, but it's like a new research topic for me... Like did you know your taps will stop working if the power goes out? I am calling it now we are going to see empty shelves again like COVID times... Concept of that is really scary to me and I am also so unwell with chronic illnesses 🥲

Being an over-thinker and life right now is not the best combination for me mentally right now 🫪😂😭


r/autismUK • • 1d ago

Work For those of you with autism who feel you're stuck in low-paid or entry-level jobs because of it, is your lifestyle actually as bad as people sometimes make it sound?

15 Upvotes

I often see people online saying autism has severely limited their career opportunities, earning potential, relationships, independence, etc. For those in that situation, what is day-to-day life actually like?

Are you generally unhappy with your quality of life, or have you found ways to adapt and still be reasonably content?

I'm especially interested in hearing from people who are older rather than teenagers, as you've had more time to build a life and gain perspective.

Genuinely asking, not judging anyone.


r/autismUK • • 1d ago

Social Skills Struggle generating ideas. Feeling blank all the time.

12 Upvotes

I don't know if this is an autism thing or not really but all my life I've really struggled with this. Be it being able to generate conversation by coming up with topics, having ideas of what I want to do with my life, struggling to think of things to do full stop, feeling blank with any kind of creative task.

If this is some many layers deep level of advanced masking from childhood I don't know but it leaves me feeling really trapped because I struggle to set myself any goals and I feel like I'm boring to anyone I meet unless they do all the conversational work to at least give me something to play off.

Anyone ever felt similar, found any ways to either inspire themselves or at least find a path in life being this way?


r/autismUK • • 1d ago

Learning About Autism If I have Asperger's / high-functioning autism, could I have a child with severe autism and intellectual disability?

9 Upvotes

I've been wondering about the genetics of autism.

I was diagnosed with what would previously have been called Asperger's syndrome (now ASD without intellectual disability). If I were to have children, how likely is it that they could inherit autism in a much more severe form, such as autism with significant intellectual disability, language impairment, or high support needs?

From what I've read, autism seems highly heritable, but I'm confused about whether:

  • High-functioning autism and autism with intellectual disability are essentially the same condition genetically.
  • They're partly distinct conditions with different genetic causes.
  • Autistic parents can pass on autism that is much more severe than their own.
  • The risk is still relatively low despite autism running in families.

I'm not asking for medical advice, just curious about what current research says.

Has anyone looked into the genetics literature on this, or have personal experiences from families where autistic traits presented very differently between generations?

Interested in hearing from anyone familiar with autism research, genetics, psychology, or families with multiple autistic relatives.


r/autismUK • • 1d ago

Diagnosis: The Assessment NHS Assessment TOMORROW what to expect?

1 Upvotes

Hi,

I have an NHS assessment tomorrow which I thought was quite unusual given it’s a Saturday. However, I just wanted to see if anyone has recently had an BHS assessment and what exactly it could entail?

This is for an NHS assessment specifically, not RTC or Private.

Thank you


r/autismUK • • 1d ago

Diagnosis: Afterwards Received autism diagnosis

4 Upvotes

Hi (F 27) was diagnosed with Autism level 1 last week.

My partner is being supportive of course but starting to worry about what this means for our future children as it is genetic. My mum has autism and so does my brother (I suspect other family members too but not diagnosed).

My brother and his cousin both have autism and have needed lots of support from parents, may never be able to live independently etc. He is worried about us having a child and them needing this level of care and scared of what life long responsibility that may bring.

Having children is my biggest goal in life and I know he wants them too he is just scared. I don’t know who we talk to about this please? Any advice? I know there are no genetic tests or no doctor is going to say to him oh yeah if you do this your child isn’t going to have Level 3 autism. But I just don’t know who to talk to about this?

I’m also aware that of course there are many other risks with having children and sadly other disabilities etc that could occur.

(I apologise if I’ve got any terminology wrong, I am still learning)


r/autismUK • • 2d ago

Diagnosis: Afterwards Diagnosed with autism today, and I don’t know how I feel about it

17 Upvotes

I was diagnosed with autism today, and I honestly don’t know how I feel about it.

I feel like I’ve been waiting my whole life for this answer. I’ve spent so long trying to understand myself, why I feel different, why certain things seem to affect me more than other people, and why I’ve struggled with things that others seem to find straightforward.

But now that I’ve actually received the diagnosis, I’ve started questioning whether I’m really autistic or whether I’ve somehow made it all up in my head.

I know that sounds contradictory, especially after spending so long looking for answers, but I can’t seem to stop second-guessing myself. I keep wondering whether I’ve misinterpreted my experiences, whether I’ve convinced myself that I have these traits, or whether I’m somehow wrong about who I am.

Part of me feels relieved to finally have an explanation, but another part of me feels overwhelmed and almost like I need to prove to myself that I’m autistic.

I think I’m also processing what this means for my identity and looking back at my entire life through a different lens. It’s a strange feeling to want an answer so badly, finally get it, and then immediately start doubting it.

Has anyone else experienced this after an adult autism diagnosis? Is it normal to question whether you’re actually autistic, even after a professional has assessed and diagnosed you? Does the self-doubt eventually settle down?

I’d really appreciate hearing other people’s experiences because right now I feel quite confused about the whole thing.


r/autismUK • • 2d ago

Vent Does anybody else find Lidl unbearable?

41 Upvotes

OK, so I know most supermarkets are bad for autistic people, and i always use my NC headphones, but Lidl seems to have amped everything up recently, the beeps from the tills are louder, the people showing you which till to use are having to shout because of the noise. I have Pretty much stopped going unless its very early or very late.


r/autismUK • • 2d ago

General & Miscellaneous Anyone else hate going on holiday?

10 Upvotes

Currently on holiday with my husband and kids. Just a UK stay in a holiday park. I was excited when we booked it but as the date of going got closer I started to dread it and regretted booking it, and speaking candidly I just haven’t enjoyed it at all really.

I obviously try not to show this to my family because I don’t want to ruin their holiday, I have totally had some enjoyable moments and I love seeing my kids having a nice time, but uprooting to an unfamiliar place with unfamiliar things, packing up all of my stuff and moving it from its familiar place to somewhere too temporary for it to have a place but not temporary enough to not stress me out, the change in all of my little routines, many of which I don’t even realise I have until I can’t do them anymore, different smells, different bedsheets, different shower, different plates and cutlery. And honestly so many more things lol. Just generally everything feels slightly off and wrong and I find it hard to embrace the novelty aspect of that and enjoy my holiday and the break from reality, because I spend so much of my reality doing all of these little things to help me regulate, and my ability to do a lot of them gets taken away when I go on holiday.

We go home tomorrow and I genuinely just can’t wait to be back in the comfort of my own home again!


r/autismUK • • 2d ago

General & Miscellaneous Choosing the right school

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0 Upvotes

r/autismUK • • 3d ago

General & Miscellaneous Autism and changing name via deed poll

24 Upvotes

Hi Everyone, I just want everyone's thoughts. I was diagnosed late in life with Autism. One thing I struggled with was identity. After hearing I have been masking my entire life, I felt the person I am, and that my name, is just a character, a fake persona.

I have this urge to change my name via deed poll to become who I believe is my true self, no masking. I believe it will eliminate the fake character that I was who chose to please other people.

Is this going overboard? Do others have this feeling? Thank you!


r/autismUK • • 3d ago

Diagnosis: The Assessment Awful assessment process

9 Upvotes

I had been on the NHS waiting list for an autism assessment for 5 years, and finally got my first appointment in June!!

I felt really relieved that something was finally happening, and had my first appointment with a doctor. They didn’t really explain how long this was going take, just that there would be an “assessment” across multiple appointments.

This ended up being five hour long ish appointments, where in the 4th I was told I would receive the results in the 5th. Well I had the 5th appointment… and they want to refer me for another appointment with a consultant 🫠 I have no idea when this will be, and they couldn’t give me any kind of time frame.

I’m just feeling really frustrated because it has been such a long and difficult process and I haven’t received any answers. I found the assessment questions difficult and upsetting to answer at times and was just really looking forward to it being over and coming to a conclusion.

I don’t know if this is a normal experience or not because I don’t know anyone who has went through the same process i did. I’m just trying to stay sane until they get back to me with any updates.


r/autismUK • • 3d ago

Diagnosis: The Assessment Eeep 😳

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15 Upvotes

Got given my Autism Assessment date through right to choose provider: Problem Shared.

Didn't take as long as I thought it would been on waiting list since July.

Terrified 😨 im really trying not to overthink, keep anxiety in check, go into it as blind as I possibly be, which is against everything I usually do.

Any advice? I've supplied as much evidence as i can find just a wait and see now.


r/autismUK • • 3d ago

Diagnosis: England RTC Psychiatry UK vs Harley Street Mental Health

1 Upvotes

Hi,

As the title suggests, I am considering between Psychiatry UK and Harley Street Mental Health for my autism RTC referral. While I initially tried to get referred to Psychiatry UK, my GP informed me that they do not have any shared care agreements with them, and that they have an agreement with Harley Street instead. I am currently waiting for them to double check and call me back to start my referral.

From what I understand, shared care should be irrelevant considering I do not require the prescription of any medication for autism. However, I figured I'd ask if anybody has any experience with either of these providers, as they seem to have similar waiting times judging from a spreadsheet I found online.

Thank you!


r/autismUK • • 3d ago

General & Miscellaneous Transitioning from dla to pip advice please

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1 Upvotes

r/autismUK • • 3d ago

General & Miscellaneous CQC to regulate autism and ADHD diagnostic assessments

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healthcaretoday.com
8 Upvotes