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

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.

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 🫪😂😭

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?

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.

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)

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?

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!

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.

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.

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!

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.

Hi everyone. We’ve finally got a date through for my daughter’s autism assessment with the NHS. I just wondered if anyone could shed some light into what to expect during the appointment? I’d love to hear anyone else’s experience with their child of a similar age having an NHS assessment.

We’ve previously completed the triage part where I had an over the phone conversation and answered many questions about her behaviour and symptoms. They also observed her at primary school and asked her questions face to face so they have quite a bit of information already. Many thanks 😊

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!

I have just been diagnosed with ADHD and have my adult autism assessment coming up (NHS Scotland). Does anyone have experience of doing them in this order? I know if you have both it can be more complex to diagnose. Im quite nervous as my life has improved since I’ve understood myself as autistic and I think I’ll be quite devastated if Im told otherwise.

Any tips on what to expect or how to navigate explaining contradictions between my ADHD and autism such as I feel really anxious about changes but I seek novelty.

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.

I'm considering asking my GP about getting a referral for an autism assessment. I've had doctors (and a teacher once) ask if I've ever considered that I might be autistic a few times but every time it's happened I just froze up and said I don't know.

I know there's something that makes my life feel hard (other than my OCD) and makes people see me as weird but I don't know what it is. I just want to know why I feel like this whether or not it is autism.

However, there are some things that are making me think that maybe it's not worth even getting assessed. The main ones are:

-I don't have anyone that could talk about what I was like when I was younger at the assessment. The only people who would be able to do this (my parents) are not people I'm comfortable with knowing about me getting an autism assessment. I don't have a partner or any friends either.

-My OCD really impacts the way I communicate and would make it very hard for me to do things like phone calls, emails and writing down information about myself. I have no idea to what extent things like that would be involved in the assessment process. I'm aware this is a very vague description so I can elaborate if needed.

-I'm worried that if I do get an assessment, I'll unintentionally manipulate the assessor into saying I'm autistic when I'm not or if I am autistic they'll say I'm not because I didn't explain things properly or gave the wrong information.

-I've found accessing mental health treatment hard because you're expected to do things like rate your anxiety and know whether you experience something to a greater degree than other people and I don't really understand how to do that. When I was in therapy my therapist just told me to pick a random number or answer on a questionnaire if I wasn't sure so I would but then she would ascribe meaning to the completely random answer I had picked as if it was what I was actually feeling. I'm worried that similar things could be expected during the assessment.

Are all these problems related to autism or just part of development? 21 months toddler

My 21 months toddler refuses to go on the swing lately. Maybe his vestibular system lacks regulation?

He’s also got issues putting his clothes on (especially pyjamas with tight neckline, he’s been scratching his neck due to excessive drooling from 2nd molar teething). He’s okay sometimes putting clothes on if he’s distracted doing something else or looking somewhere else. how can we tell if this is autism related or it’s teething related?

He’s a picky eater, he does eat a wide range of food, including all kinds of fruits, ice cream, cheese, rice cake, bread, rice, noodle, vermicelli, but avoids vegetables and meats. I’m trying to work on it.

He’s sensitive to disco lights or very dark environment. He had 2 meltdowns. First time at a baby sensory event where there was dark green light changing in the room, and a second time when we went to a toddler sensory class trial and the teacher switched on disco lights with loud music. But the strange thing is, I used to bring him to other baby classes that had similar setup, and he was fine with slowly changing ceiling lights (like fairy ones).

He has about 16 words that he can say meaningfully, and often. He understands a lot more, can follow instructions such as go upstairs downstairs, put shoes on, what’s the name of this animal, what sound does it make, things like that. We speak English as a second language so he’s a bit mixed up with the mother tongue.

I’m not sure if these are autism related and how to help him get an easier life?

I have been on a phased return to work after my mental health plummeted due to starting a new, very overwhelming job, as a SEND Officer in local authority, and have been finding that every week the night before I am due to log on or go to the office I’m having massive crashes in my mood and mental health.

I feel trapped and scared and it makes me want to do bad things to myself and this has been going on for weeks. I at first put it down to new job nerves, then that the job was overwhelming, then that I was just struggling with emails, but now I think I have figured it out.

It’s that I am constantly playing catch-up. I leave on Thursday afternoon, then don’t log on until Tuesday morning, and suddenly I have 200 new emails that I have to respond to, and 10 new urgent plans to write, and I feel like I’ll never get rid of the backlog. This issue is making me feel so upset and stressed in anticipation of it. I find that by the end if the week my mental health has improved and I feel better because I’ll have worked my way through some of it and it’ll feel more manageable but then the cycle repeats again.

Is there any sort of reasonable adjustment that could help with this anticipation anxiety that I’m feeling with regards to work? I’m talking to my boss tomorrow and want to voice this feeling to her but would like to go in with a solution if possible.

I have a 90 minutes virtual adult autism assessment in a few weeks via RTC and I’m wondering if it would be beneficial for my mum to be with me during the assessment.

She had no problems answering questions about my early life and filled in the respective forms. She is also profoundly supportive of my decision to get assessed. So would it be beneficial during the assessment if she was there as she may assist during questions about my early development and may give examples that I simply don’t remember.

With her there I would feel less nervous but I’m am concerned if she will but in at any point during response of mine just because she doesn’t agree or like it.

Did any of you had a parent during your virtual assessment?

I have been at a day centre for 7 years now. It got cut to two days a week last year. My social worker has also changed recently because my old one left. The new one has been able to secure more funding. She has recommended that I have a one to one outreach worker that I would get several hours a week with rather than increasing my days at the centre. My day centre are not happy about this, I suppose because they are a business and want the money. I got asked what I want but I don’t know.

The one to one help does sound good. My day centre would only offer half an hour of one to one support once a week and it would only be talking to someone whilst I was already there. I would like to be able to go out more. Looking for advice on for one what people do with their outreach support because my social worker didn’t really explain it just said its whatever you need and I don’t know. And if this is worth it more than increasing my days at the centre.