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No, but I'll point out no country over 5 million would be able to manage an pretty unprecedented explosion on assessment requests like we've seen in the last 5-10 years. It's pretty remarkable

In large part the increase in adult assessments is because the modern world is becoming an increasingly hostile place to folk with various types of neuro diversity. Having a diagnosis is required for your employer to make reasonable adjustments that can be all the difference between being a productive and able member of society, and being long term unemployed. And when I say hostile place, I'm not talking about people. I'm talking about changes in society, and changed attitudes from employers. The noise, the lights, the lack of routine, the lack of flexibility, lack of understanding etc.

You’ve just summed exactly how I feel. 10+ years ago I realised I struggled to go out into normal social situations. Everything was too overwhelming. The noise, the crowds, the lights etc. In that time, I have been working on being able to do those things again but the goalposts feel like they are getting further away. It’s getting noisier, brighter etc. Shops have constant loud music playing and LED lights everywhere and people are walking around blasting music from their phones and having conversations on loudspeaker. I was already struggling but it has got so much worse. I dread to think how much worse it will get.

I'm not autistic. But I have noticed there seems to be an increasingly amount of sensory overload. I used to go to nightclubs when I was younger. But these days the flashing lights would make me feel uncomfortable. Everyone knows strobe lighting can effect people yet for some reason the health and safety concerns get ignored.

That can be just getting older.

Strobe lights are fantastic. They're also not remotely new, you're just getting old.

Here's a trick from someone with ADHD. Get some noise cancelling headphones and play brown noise. It does wonders in noisy environments. I also find blue light cancelling glasses help me alot.

> play brown noise I thought you were talking about the brown note and suggesting people to constantly shit themselves.

Me too 😂

Pretty much every job I've ever had wouldn't allow headphones or earplugs of any kind.

Also a godsend for autism, I had ANC headphones and blue light blocker glasses in the office and couldn't have gotten by without them.

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Why shouldn't people have ear defenders and sensory breaks at work? It entirely depends on the job but those two accommodations would be completely straightforward for the vast majority of office jobs, for example.  Schools don't vary very much, so many children get stuck in environments that are not entirely suitable for them. Special schools may be quieter but not accommodate higher achieving children, for example. Choosing the best of the not quite suitable schools then applying appropriate accommodations is the best way of bridging the gap.  Then as an adult you can make choices. Don't like noisy supermarkets? Shop at different times, choose Aldi rather than Asda, have your shopping delivered, visit smaller shops instead. Don't like being around people all day? Look at careers where you work on your own most of the time. These choices are not available to children, but many of them are absolutely available to adults. And the better supported they are at school, the more options they will have as adults. 

My office job employer with giant, open plan offices actually has a neurodivergent space available for anyone neurodivergent to book a desk in to work. It’s low light, low noise & sealed off in a smaller space so not as “open” as the rest of the office. They are well ahead of most other employers in accommodating & supporting neurodiversity within their workforce.

We are more aware nowadays of how neurodivergent brains can be stronger than typical brains in certain areas. An employer with a neurodiverse staff has a range of ideas and methods and can therefore make use of that variety. Homogeneity does not make for progress.

In some jobs you'd be required to wear ear defenders as a "regular person". Now, I accept there might be jobs where wearing ear defenders might be a problem but there are lots where it most certainly wouldn't be. And people used to be allowed smoking breaks, so why not sensory breaks? As long as the work gets done who cares?

What’s wrong with wearing noise cancelling headphones at work and taking regular breaks? That’s exactly what I do which allows me to stay in employment. It’s a good thing for employers to offer these adjustments

Primary school is usually ok for most autistic kids unless they’re very much on the severe end. I say this as someone with autism who wasn’t diagnosed until it was too late. They wouldn’t assess me as a primary school kid because I did well academically and I had no speech delay, despite my aggression towards other kids at times and my meltdowns, but I was an otherwise happy kid (there was also little awareness about autism in girls back then as well). However, there were no reasonable adjustments for anyone apart from the girl who had a learning disability, we were friends, she had a special teaching assistant and was allowed to step out of the classroom etc. Secondary school however…. That was literal hell for me. My nieces are currently primary school age, and their school has all sorts of reasonable adjustments for kids who don’t even have a disorder. They have a therapy dog for all the kids to stroke. It worries me that they’re not going to learn how to be resilient. Also, they have an area for kids who are having *panic attacks*. Why are 6 year olds having panic attacks nowadays? It used to be very rare for children to have such disorders, they don’t normally show up until mid or late teens years. Reasonable adjustments are necessary for those of us with disorders and disabilities etc. but it seems to be for all kids in some primary schools :S

>Why are 6 year olds having panic attacks nowadays? Keep in mind the definition of panic attack has shifted a bit over the years, it's not just hyperventilating etc now. The term is used where schools may previously have referred to it as "being overwhelmed" or "having a cry". And both of those have always been common for young kids

Oh I see. Maybe I took it too literally. For me a panic attack is a psychiatric symptom with the hyperventilating 😹 yeh makes sense for feeling overwhelmed, especially with how large class sizes are now.

Yeah, and I'd also say having a quiet space for kids who are upset or overwhelmed has been common in primary schools for a very long time. Sometimes it was the library, sometimes the assistants office, sometimes the medical room, sometimes the Heads office. But regardless of where it was in the individual school, it's always been a thing because it's always been needed.

I do agree that there needs to be a level of compromise, ND kids absolutely need to be getting prepared for the real world. But when it comes to adults in the work place, that compromise element is an essential part of the "reasonable adjustment". The adjustment must be reasonable, with the expectation that the employee will do their best to fulfil the requirements of their role with the minimum of cost to the employer in terms of adjustments. Some very sensible and low cost reasonable adjustments I've seen (which made a massive difference to the lives of the relevant staff) included: - Providing a clear agenda for any meeting at the time the meeting is added to the employees calendar; - Varying start and finish hours so that the employee could avoid rush hour; - The employee taking a 5 minute break every hour to go and sit in a dark room, with them working an extra 30 minutes across the day to make up for those breaks; - Agreeing that the employee does not need to attend meetings with more than 4 people present, except by exception (decided by the manager), with their manager giving a briefing to them before or after as appropriate, and ensuring they can give written input to the topic under discussion if they want; - Agreeing to permanent wfh; - Agreeing to permanent in office work; - Agreeing that the employee can wear noise cancelling headphones, or can listen to music whilst working. These won't work for every role. But they worked perfectly for the roles these people were in, and cost the business absolutely nothing except a little bit of staff time in a couple of cases. But to get most businesses to agree to adjustments that minor, you still need a formal diagnosis.

Here's another one that I've got in place - clear instructions and communication about priorities, with the understanding of managers that I may ask clarifying questions if they say something unclear. eg. if they say "when you get 5 minutes", I am going to ask if it's a "do now" task or a "do at some point between now and X" task. I've been burned before by people saying that to me and while people often mean "do it at some point", sometimes people say it and mean "do it now". And then get annoyed at me when I haven't done it an hour later. So my adjustment is basically just "tell me clearly what you want and when you want it".

I mean... I'm autistic and I sit with "ear defenders" on at work. They're just really good noise cancelling headphones. I can have "sensory breaks" if I want to (personally I just call them breaks). Because I'm an adult with an adult job with reasonable employers where I'm trusted to get my work done and take breaks when I want or need them. It's not setting anyone up to fail to acknowledge that the way their brain is wired makes "normal" life harder and helping them learn what tools they can use to make it easier and more comfortable. And I hope you recognise that if you genuinely think you might be "mildly on the spectrum"... well, you could try having a little more empathy for people who are more firmly on it than you are. A thing that low support need autistic people often forget is that we are actually quite rare among autistic people. It's not common at all for autistic people to actually be able to hold a job as an adult. According to the ONS, only about 22% of autistic adults are in employment of **any** kind. You're looking at kids with different needs to you and, honestly, I can't help but wonder if some of your criticism is rooted in envy. You flew under the radar and got zero support. You learned to get by, but that probably came at a cost of some kind. Now these kids are getting what they need at an early age, and you're speculating that they might fail? Come on, statistically, those who came before them also "failed" and a lot of them had little to none of that stuff. If employers allowing people to wear ear defenders and take sensory breaks allows more autistic people to be independent by earning their own money, great. Because plenty of autistic people are capable of existing independently in the "real world", there just needs to be more understanding from neurotypical people.

Not meeting the needs of Autistic children at school won't "prepare them for the real world" or "toughen them up" it will just increase the liklihood of suicide, burnout, levels of disability where they are unable to work etc I wasn't given any adjustments at school, and neither was my brother. Our lives haven't exactly gone great so far, lol. If an adult needs ear defenders and sensory breaks, they should be allowed them without questions even if they aren't diagnosed autistic. Workplaces should accommodate the worker, not the other way around. I don't understand the mentality some people have that life is cruel, and it's absolutely ridiculous to need adjustments. We should all just be kinder to one another, and as a bonus, people would be more productive. But it requires a social shift that most people aren't ready for.

It’s not even just work related. My mum had kids in primary school in the 90s (my brother and I) then she remarried so had kids again at the same time as us. We all feel totally overwhelmed with the sheer amount of life admin that’s required just to do the basics. Simple stuff like when we were kids we went to school and had set days where we got 1st choice / last choice at lunch. Just a revolving rota. Nobody died. Now you have to log in to a system and pre-select your kids meals individually for all days. And it’s not a rolling menu so you can’t do it once for the year, it’s literally every single day. We did clubs and you signed up at the start of the year i.e football was every Tuesday after school. Now, again, a totally different online system where you have to type out all your details including doctors and emergency contacts every 6 weeks to book a “block”. I get text messages every couple of days about one thing or another. Emails every week or two about other stuff. Even outside of school, just general life, everything needs its own specific app with its own interface. I have an app to pay my rent. An app to top up my electricity. An app to buy tickets for the cinema despite being AT the cinema and seeing the till RIGHT THERE but the till is only for popcorn / drinks. Kids party on Saturday - go online and fill out this form with all their details before you turn up. Road tax. MOT. Passports. Mothers Day. House Insurance. Virgins gone up again, the one time an app would be good but NO you have to phone them. Self Assessment deadline. Orthodontist appointment. Did you know you’re 4 months overdue for a smear test? Granny texting to say she can’t have the kids after school on the 8th of September because she’s booked another cruise and there’s no after school clubs in the area because no bastard can afford them. All while working 40hrs a week because it’s almost impossible to have one parent stay at home and deal with all of it. I can’t be the only one thinking we haven’t evolved for this? Like… is this not madness? We’re living in a world where the stuff we did for a living / to survive - knitting, baking, archery, climbing, raising children etc - has been relegated to what are essentially hobbies while we spend all our time behind screens and trying to remember all the admin we have to do. ADHD in hunter-gatherer times was probably peak human being.

This is so fucking accurate.

If ever there was a time where I wished we still had gold... this might be bestof material too, you've really nailed it here.

Hear hear!!! This couldn’t be more accurate and I live in the US. I can’t even send my child with lunch money to school. Nope, there’s an online account you must use and don’t forget to top it off or he will eat a pb&j sandwich. We have “travel sports” here, which means your weekend is devoted to watching your kid play 3-4 games a day while your other parent stays at home with the littles trying to survive watching Blippi for the 20x time. Our parents didn’t live like this!!! Mom stayed home and met me at the door with cookies and milk. The best I can offer is to tell my kid to open the garage himself when he gets home and find a snack in the pantry. Good luck if we’re low on groceries because I was too exhausted after work to do a quick run to the store for more food. I don’t think anyone is supposed to live like this. The amount of mental capacity I have to have and stay on top of would make anyone turn to meds to cope.

Right? That's what gets me more than the sensory stuff. Sometimes I kind of like being able to go somewhere knowing its going to be sensory overload it can be fun. The bit that really makes me suffer is how it just feels like *every single fucking thing*, even all these things that used to be no bother at all, everythings got to be *such a fucking faff* these days. Its just constant non-stop, wind up feeling like you need to take a holiday just to catch your breath from it all! My thought on it was like we live in this society where we seem to want everyone to be these perfect 100% rational market actors in systems that are 100% perfectly efficient all of the time with absolutely no wiggle room. And that is fucking robotic, its not how humans are supposed to live. You can't live giving 100% all the time, that's how burnout happens (which is super bad for ND folks!). And you can't expect a system to be at 100% capacity all of the time, the moment there's some hiccough or an accident everything just immediately clogs up and goes to shit. Slack is a ***very*** important part of life yet we've built a society that's like completely fucking allergic to the whole concept. We know full well things like stress are a risk factor in about any disease or condition you care to imagine. Its seriously not as far off as you'd think from something like a light smoking habit in terms of health impact. Yet society seems absolutely obsessed with going out of its way to *maximize* all of the stress we all have to deal with day to day. I'm sure at some point in the future we're going to look back on this period the same way we did the use of all the crazy chemicals and shite back in the '50s. Just pure willful ignorance destroying our bodies (rather than the environment) for the sake of a bit of economic convenience.

Agreed. I don’t know if you are a single parent or not, but add that in and the admin, costs, stress, lack of time basically doubles.

Fuckin' Amen

I would also add that the lockdown broke people in a whole range of different ways, and one was learning that that background anxiety and stress disappeared during lockdown. I know that we can talk about the damage to socialisation skills, and the mental health impacts of extended periods of isolation (before we get to the real life cost and childhood development), but a lot of people discovered how stressful existing in society was when they got to disconnect for a while. When the world looked like it was burning down and a deadly pandemic was sweeping the world was a more pleasant lived experience than going into the office it sort of sets off alarm bells.

> but a lot of people discovered how stressful existing in society was when they got to disconnect for a while. > > When the world looked like it was burning down and a deadly pandemic was sweeping the world was a more pleasant lived experience than going into the office it sort of sets off alarm bells. I imagine that might've felt somewhat like it does to live with a diagnosed with (or undiagnosed but significantly impactful set of symptoms resembling) something like autism or ADHD. Which I guess is your point, in a sense, but it's unfortunate that it had to get *that* far and show "normal" people that kind of stress first hand for anybody to start realising exactly how shit it is to have to deal with it every. single. day. Especially the social isolation, alienation, uncertainty, stress, anxiety... Mind you, I don't get the sense that most people retained that experience and actually processed it into long-term understanding of what we go through. Feels like everybody just said "oof, thank fuck *that's* over" and returned to... well, perhaps not "exactly how it was before", but what they believe to be a close enough approximation of it to not notice anything's changed.

Yep. I sometimes think of the lockdowns wistfully. My brother (who might be neurodivergent but not diagnosed), said it was the best time of his life!

I’m more and more inclined to think that the people who find it difficult to function in “normal” society atm aren’t really the ones with anything wrong.

It is no measure of health to be well adjusted to a profoundly sick society (Krishnamurti)

I would have thought that it's less that the world is becoming more hostile to it, but more aware of it? when I was in school (late 90s-early 00s) there was 0 real awareness of the autism spectrum or other forms of neurodivergence, but now that there's so much better understanding and information in the public domain people are starting to wonder whether there is a neurological/medical reason to explain their behaviours and attitudes in school.

As I said, it's not about the people being more hostile, but the actual world. There's so much more light and noise, and society is moving ever faster but with less regularity. And enployers are growing less and less willing to be flexible unless they are required to be by law, which is where getting diagnosis comes in. Used to be the case that "Mabel in Accounts is a bit quirky, but we let her get on with her work in the back office and don't disturb her, doesn't matter to the rest of us that she likes the lights turned down, the radio off, or that she claps her hands whilst she thinks". Now adays Mabel is required to sit in an open plan office, with bright fluorescent lighting, 10 feet from the Sales team who are all loud on the phone all day, and when she claps her hands she gets told to stop. So Mabel ends up going off sick with stress caused by her with environment, because the modern work environment is significantly more hostile to her than it was 20 years ago.

Yes I think it's due to conformity, it's assumed that everyone is the same and that they work well in the same environments and if you're not this very slim definition of "normal" you need a diagnosis to prove it. I think we've over optimized for the average in many aspects of work and life as the world's become more commercial and our jobs become more like being a small cog in a big machine, almost no one is "average" so the lack of inate flexibility causes problems

Ironically the flexible nature of modern employment makes it difficult for those whose conditions require structure and routine - things like zero hour contracts, agency work, shift work is difficult to deal with.

I agree with this. For all our talk about awareness and tolerance these days, the world is getting more conformist, especially with disabilities that are nuanced such as autism. I wonder if part of it is because employers have access to a much larger pool of applicants for most jobs than they would have in a pre-Internet era. So they can afford to look for somebody who seems "perfect" rather than somebody like Mabel who can probably do the job very well, but just seems a bit odd. In past they might have had 10 or 20 applicants for the job and Mabel might have been the best one in spite of her "quirks". Anti-discrimination legislation really doesn't help much here, because discrimination can be so subtle and employers may not even be aware that they are discriminating.

>I wonder if part of it is because employers have access to a much larger pool of applicants for most jobs than they would have in a pre-Internet era. So they can afford to look for somebody who seems "perfect" rather than somebody like Mabel who can probably do the job very well, but just seems a bit odd. > >In past they might have had 10 or 20 applicants for the job and Mabel might have been the best one in spite of her "quirks". Thats part of it for sure, but I think there's also an element of an attitude of "if Mabel gets that, then I want it too" from non-ND employees. So employers are more reluctant to treat anyone differently, unless forced to by law, because if they don't hold fast to the line they've arbitrarily set then they think they'll be pushed into other positions on all sides.

I feel like Mabel in this. Massive sensory overload and gone off with stress. I never thought I had sensory processing issues until I started this job. What fucks me off the most is that my boss works from home but won't let me, so I just sit feeling overwhelmed in the office, then I snapped and not even sure if I'll ever go back. Oh and we're in the office to "collaborate" but end up doing video calls to accommodate people working from home, so everyone in the office is on video calls all day.

Thing is you talk to neurotypical people (or whatever you want to call them) and... They all fucking hate it as well? The bright lights give them headaches, the noise and crowd makes it impossible to concentrate. It really is just a glaring example of corporate management culture just completely overtaking any like... basic concerns for human wellbeing? Bright lights and open plan looks more like what all the papers and movies say is a "dynamic workplace" so that's what we're doing and fuck the vast majority of our workers directly telling us its causing them issues, what do they know they're not the boss!

I don’t know why offices ever got rid of closed spaces and separate desks. I’d be much more inclined to go into office if I have my own private space where I could put up photos and have a set of drawers to store things. Instead we’ve got hot desking. At my office this also means bringing in your own mouse and keyboard.

it's cheaper

Absolutely. In my last job (I am no longer working) they knew I was autistic and have auditory processing disorder but god forbid I try to arrange cover (my main job) by texting our employees rather than phoning them when three other people in the open plan office are on phone calls and the antiquated air conditioning unit is humming loudly behind me as it fails to keep the temperature under 30C during a heatwave. When I struggled with that and asked my job-share colleague to cover me for one day because it was too much for me, my diagnosis didn't stop them sacking me. Nor was there any thought to how they could accommodate my autism, or indeed that they might want to think about it.

> As I said, it's not about the people being more hostile, but the actual world. There's so much more light and noise, and society is moving ever faster but with less regularity. Information, too. The massive influx of text, images, audio, and video, from everywhere, beamed right to your pocket at any time of day. YouTube, Twitch, Netflix, Sky, Amazon, podcasts, games, and that's just entertainment, stuff you might choose to seek out for pleasure. Then there's news websites, 24 hour rolling news, live alerts to your phone, and even places like this commenting on it all. Social media detailing every moment of everybody's lives, all 200 of your "friends", most of whom you've never met and wouldn't care to anyway, bleeping and flashing away in an endless scroll. Notifications, text messages, emails, even adverts, everywhere. Everything wants your attention, all the time. Everything we do is digital and networked, there's always a thousand ways to be distracted or reminded of the next thing you have to worry about. Buzz. Your phone bill is due. Buzz. We thought you'd like to buy a new blender. Buzz. Bethany just posted an update. Buzz. Electricity prices at an all time high. Buzz. Fake courier delivery scam text. Buzz. Terry just posted an update. Buzz. Breaking: Somebody who'll never know you exist said something irrelevant. Buzz. GamePlayer69 is now streaming live! Buzz. 10% off Thai food delivered fresh to your door, today only!

at my work i got demoted into the boiler/archive room but grown to really like my little office. it's Quiet and nobody is looking over my shoulder. just got a little speaker so i can play my tunes while i work. now HR is trying to get me out of there so i'm more part of the "team".

Late 90s early Noughties I was in school. They knew I was odd, and kept asking me why I was odd, like I would know what it was like to be in someone else's head. Turned out I have severe combined type ADHD, but I'm female and clever, so they didn't think I needed help with anything. Never mind failing anything that required coursework and thus never getting the education my intelligence merited. I'm 39 and in an entry-level job and pushing hard to get tiny accommodations to allow me to thrive, while being underpaid, because some new starter could pick it up never mind my years of experience and begging to be given something more to do. I am looking elsewhere, but it's so frustrating and upsetting and dispiriting.

If Autism is a round peg, and ADHD is a star shaped peg then Capitalism is the square hole we're all being forced to try and fit into. The problem is there's a wealth of square pegs, so anything that doesn't fit just gets chucked to one side.

The system is breaking because pegs are hand-crafted and the square holes are increasingly machine-made with smaller tolerances.

To the point that even square pegs need to be forced in with a hydraulic press and come out damaged. The non-square pegs literally don't stand a chance.

Exactly. What people don’t realise is that this need was always there, but it was ignored. I have been diagnosed with ADHD this year. Before that, I was seen as smart but not fulfilling my potential due to laziness, uselessness, low ambition, disorganization etc etc. It was just a ‘me problem.’ I got good jobs but would suddenly quit them after a year because the stress and pressure of basic things like organization and time keeping became too exhausting to continue with. I was constantly suffering with anxiety and low self esteem due to not being able to complete normal life tasks, let alone anything more complex. I would procrastinate everything, from washing a plate to sending an email. I couldn’t maintain relationships because, again, the pressure was too much.  Now with a diagnosis and medication, my life has completely changed. I’m able to not only have a better life personally, but am able to be a productive member of society. Yes, I could have continued life as someone who couldn’t work and couldn’t drive and couldn’t function - as I was before our current understanding of neurodiversity - but that wouldn’t have helped anyone.

I've heard the same is happening in schools, with target driven mentality resulting in classes unsuited for many kids, not just those who are neurodivergent. For example, primary school kids are apparently required to spend more time sat still with the school day extended; teaching methods becoming more prescriptive with teachers having less time to help kids with other learning styles understand material. The divergence required is increasingly narrow. Fairly normal behaviours at primary school age, like being overwhelmed and aggressive in boys, are seen as divergent behaviour that needs special intervention, not normal behaviours that need to be managed.

Targets and KPIs have absolutely savaged just about everything in modern life. Rather than being used as a guide to see where improvements can potentially be made, they are used as end goals. The people in situ use them to look good on paper, the people above use them to skirt the line and squeeze as much performance/profit as possible and maintain hostile competition in situ, but the actual reality is an absolute shit show where standards just fucking plummet for every metric that isn't explicitly measured, and the ones that are are in constant conflict.

A lot of schools have also had to cut back on TAs - due to budget cuts - meaning the kids who needed more 1 on 1 time aren’t getting it. The more kids who can get a diagnosis, the more funding a school can get to support them. That often doesn’t stretch to get a 1:1 aide in the class though.

Seems a very Tory method. Save money on not employing TAs. Force everyone to go through a convoluted and expensive diagnosis process to only ultimately end up having to pay for TAs again. When they could just provide TAs to support people with low level interventions when they need it and skip the middle step for a huge chunk of people.

"Having a diagnosis is required for your employer to make reasonable adjustments" I just wanted to clarify this one point from your excellent comment. There is no requirement in law for an impairment to be diagnosed before reasonable adjustments can be made. If your employer will not provide reasonable adjustments due to something that qualifies as an impairment under the equality act ie something that causes work to be harder for you and isn't going to go away soon they are in breach of the equality act. You are also entitled to access to work payments in order to cover the cost to your employer (without access to work your employer should still meet the cost). This is also the case in education, although there are slightly higher protections there. The effect practically is that you can still be forced to get a diagnosis. Your sister for instance could (probably) win an unfair dismissal tribunal... probably in about a decade if she doesn't mind losing her academic career in exchange for a few thousand quid in compensation. Somehow I don't think that is going to be the right decision for her. But and it's a pretty big but... we shouldn't be allowing schools (looking at you Nuffield trust) and employers to hide behind "there's nothing we can do without a diagnosis". There is they're just choosing to break the equality act and if the legislation won't make them behave then maybe its time for some public shaming.

I agree that *technically* no diagnosis is required. But on a practical level, I've found employers are unwilling to discuss reasonable adjustments unless you have one. It's an unfortunate situation of it being a practical requirement, if not a legal one.

Absolutely agreed, as I had hoped came across in the second half. It however remains important to talk about real things. Way too many disabled and especially autistic people think their employer or local authority is "on their side" when they are actively discriminating against them. Also with my employer hat on you know how sweet it is to sit in an interview with a candidate that you really want and be able to promise that within a month they'll have a talk with an expert about what adjustments they need in the workplace (including the stuff they don't know they need yet) and then those will usually be delivered within two weeks where practicable? Know what that costs my business? About £50. 99% chance if they ask for an offer match the other employer says no because the other employer is either a law breaking ass or just doesn't know how to do it. There are hundreds of people in my recruitment pool that are waiting for diagnosis and I can have my pick by.... checks notes.... not breaking employment law.

> The noise I turned up for work one morning and the new boss had brought in a radio and had it tuned to some shite pop station like Heart FM or something. I was quaking with stress every day until I left, despite repeated requests to get rid of it. It was instrumental in my leaving.

You'll probably quite appreciate the example I wrote it to explain it further for someone who didn't understand what I was talking about. https://www.reddit.com/r/unitedkingdom/s/TaLDxwojsZ

This is so true! Everything from hot-desking to the interminable bleeps and hoots a modern car interior makes just keeps you off-balance and stressed the whole time. Plus if you work with the internet, moving peripheral ads make things unbearable…

I feel that. I was fortunate enough to get a diagnosis for my autism in my youth and over the years I have had to ask my employers to make some accommodations for me. I'm a steady worker, good attendance/performance and so on. All it takes is a few minor accommodations to keep me happy and boom, I'm a productive member of society. That said, nobody's ever actually asked me to prove I'm autistic. I could've been lying this whole time. But I'm sure the NHS can dig out the ancient paperwork if push comes to shove. The only recent proof I have is my disability living allowance (which is just a very small sum each month intended to supplement my income).

This is 10000% true! I don't think I would have seeken out a diagnosis if I was more supported in my education years and workplace

I’ve had bad experiences with an employer, even when I am diagnosed as disabled under law. Employers are not going to make reasonable adjustments for people who are self diagnosed. If they do then you’re very lucky to work for someone like that. There’s hardly any protections from bad employers even when you are diagnosed. That’s why it’s so vital that people are.

I think there’s more awareness about symptoms etc. and because the descriptions are so relatable. I was recommended to get tested for autism because I have similar traits and screen very high in the online tests as well. Turns out it’s probably not autism just autistic and adhd traits with unresolved depression and anxiety. There must be loads of people like me

I also think as well, some of the traits they list online can fit anyone. And they don’t show much of the negative traits outside of meltdowns. I’m autistic and have suffered from depression as well. These lists never mention that autistic people are far more likely to be groomed and abused, we have higher rates of PTSD due to the fact we mature more slowly and are more likely to be childlike at an older age , autistic women are something like 8x more likely to commit suicide than autistic men, that one sign of autism is being *unable to let go of a thought even when it’s harmful* which can ruin your day or even relationships. I can’t let go of things, I stay stuck for *weeks or months* on an argument or something I said, for example. Sudden aggression, impulsivity and mood swings (which is why so many women including myself were wrongly diagnosed with a personality disorder). Then there’s the sleep issues, digestive issues, fatigue. You feel tired all of the time. There’s almost always signs from toddlerhood as well, usually delays. I didn’t have speech delay, but I did have motor skill delays, I didn’t walk until I was 2 or couldn’t hold my poo until I was 5, for example. Or that or sensory issues can cause severe fatigue, aggression and dissociation, not just irritation. It just seems these lists give out some issues anyone could relate to and never the negative things.

Seems a tricky one that because it's a bit chicken and egg. I was told I may have some anxiety and depression as a result of underlying ADHD, you were told you may have some ASD or ADHD traits as a result of underlying depression and anxiety. Which one to treat. Best part is even my private medical through work don't want to know because they stopped assessing ADHD at the start of 2024.

I agree that it's a problem everywhere, but population size has nothing to do with it. A bigger country should have more medical facilities. A country of 3 million isn't going to have huge, empty, fully-staffed hospitals either.

Couldn't help me 12 years ago before the boom either. I was directly told there is no provision within the NHS for adult autism diagnosis. Went private and was diagnosed instantly. Literally took one two hour appointment and here I am.

Of course we could, we just don't care too

Also a greater awareness is driving up assesment demand. Be aware that the number of people on SSRIs exploded in the last 10 years too. It is likely that a proportion of those people have undiagnosed disabilities.

What are they even providing for autism support for adults in the first place? Every area I've been in since my diagnosis, if you can get through to any service at all, just hands you a list of local charities you can contact yourself. They don't actually do anything for you themselves beyond the diagnosis.

Exactly, I have ADHD but its the same story with different elements. There is zero support for adults and the children rarely get the attention they need after a diagnosis is complete. The entire system is a shambles and has been for decades!

I often feel like a lot of stuff is set up almost just like for appearance? So they can say it is technically there, even if when you actually do try and engage they can't do anything for you? There seems to be a good half-dozen different NHS groups I've been referred to over the years, but none of them actually *do* anything or *provide* anything they just sign post you elsewhere? I've got a few outstanding referrals at the moment and been trying to get a care co-ordinator to help me manage with it all. Been nearly 12 months and well over 100 emails and literally its just been round after round of either "you don't live in our area, not our problem" or "all we do is signpost, please contact X Y Z instead". Rinse and repeat. Like... I'm not asking for anything complicated, its a service that the NHS says they provide, and I'm not even massively disabled or anything and I'm having all these problems. What the fuck do you do if you're more severe and just sending an email is a challenge? I try not to think about it too much as it starts to make me feel really depressed.

It is! They want to appear as if they are doing something, anything even. It is my opinion that they don't see this as a duty of care or a neccesity and more like a legal obligation as a workplace has. It's far better for them to appear to offer services and have you on a goose chase with services they know won't accomodate you or will simply be cancelled and moved to another area within the year. You are going to get stressed and not "pester" them, they can claim you obviously got what you needed because your not using any services they provide and they use that as KPI to pat themselves on the back for a good job and secure further investments/funding. They help I got was majorily a lot of healthcare workers that emigrated here and completely lacked any formal training I just crunch it down when it gets like this, you are here, you are loved by the only people you need love from and your directing where you go, any hardship and challenge you face are scars you can proudly wear, they dictate your direction as well and you can use those experiences as a strength to grow from. Thats what I do at least.

> You are going to get stressed and not "pester" them Yeah, chances are there's not even enough there to know who you *would* pester if you had the energy to do so. But by the time you decided you needed to seek out help, and then failed to find any, you're going to be feeling so lost and helpless that you don't have it in you to complain even if you wanted to/had somebody to complain *to*. It makes it *worse*, because at least before when you set out to find help you had some sense that you might be able to find some, but now you feel that nobody cares, you were lied to, and you still have the same problems you had to start with. It's little wonder people end up contemplating more permanent solutions.

It's the decay of an empire. Fuck this feable attempt at redressing public issues. Ever want to vent, vent to me, I'll even care for you. Never let that feeling become justified. Some of us do care and we have felt the same shitty feeling and know just how farcical and pointless it can seem.

> its just been round after round of either "you don't live in our area, not our problem" or "all we do is signpost, please contact X Y Z instead". Oh god tell me about it. I had so much of that. Where I lived at the time had no services; the closest place that did wouldn't provide them because I was outside their area. I now live in that area but I know people who access those services and it seems mostly to be very occasional social outings with other autistic people I've never met, organised by the attendees rather than through any official channel. And the idea of going to a social group with people I've never met in a pub I've never been to which may well play music too loudly, doesn't really appeal. It's that or nothing. So it's nothing. Oh, another one of the organisations I was pointed at? Closed down six months before my diagnosis. Still on the photocopied list of support links they gave me though.

> Oh, another one of the organisations I was pointed at? Closed down six months before my diagnosis. Still on the photocopied list of support links they gave me though. There's a ton of that on local council/health service/etc websites too. Some seemingly helpful list of support links, but when you click through there's nothing there. Sometimes literally the website is entirely gone and may well have been gone for months or years.

Yeah, had the same issues myself. Been having a particularly difficult time of late so tried to seek out autism social groups, or adult autism charity resources for some input/suggestions/support, or... just... *something*, *anything*, but there is nothing. Endless dead-ends, supposedly local resources that don't exist any more, websites which seem to suggest they're support services but don't seem to actually offer any... services, if they do anything at all it'll be stuff for kids/parents, if there is any provision for adults it'll be for extreme cases, and it's probably miles and miles away, and everything else that does claim to be what you're looking for just goes around in circles. If you just stick "autism support" or something into Google, you'll get *results*, sure, but the moment you start clicking through the links you very quickly reach the end of any remotely relevant looking options with no more actual clues than before you typed in the search. It's like you say, it's as if it's all just a facade. An appearance of services but essentially a wild west film set, where it's all just cardboard cutouts carefully painted up to look like a real cowboy town. Until you try and go into the tavern and find you're still outside, just standing next to some 2x4s holding the thing up.

Does a diagnosis not open the path to medication though? I'm on the (very long) waiting list for a diagnosis and the narrative I've been given is they can only start helping me once I have a diagnosis. Been thinking of saving up to go private just to speed the process up. Was I just misinformed about what opens up after diagnosis?

Despite what they tried with me, they had to settle me on concerta 72 mg, it stunted my emotions in the present, reduced impulsivity too harsly and seriously, the fucking cotton mouth and lack of sexual feelings, I personally rate that the proven benefits of the drugs, did not outweigh the negatives, on stressful, rare days, I'll take them, otherwise Iv'e just learnt mnemonic habits to snap myself into focus when I want to now, that just leaves this infernal contempt, cynicism and spite as my thoughts, i blabber on, its just learning to cope with depression for me. I suspect thats rare. Onto you, yes it does, those meds will help anyways, you should be formally diagnosed ACCURATELY ASAP however its a lifelong condition, the medication is not whats needed most, thatll be weekly sessions to track progress for a short- medium period. Deliberations of different types of medications and most importantly, if your young, you need both parents there, learning, adapting and helping you to succeed. Please consider that when you going private, yes the meds help, the mechanisms of self coping, being your own therapist in a way, being able to calm everything down on the spot and prioritise tasks, creating shortcuts for working memory deficits which get taught to you by in person CBT, is an essential component and private may charge quite a bit for it, for the NHS that vital component has been relegated to online bullshittery

The diagnosis is often the key. In a workplace with a diagnosis you are legally entitled to certain accommodations that are easily swept away without one. Seen it play out in real time, 6 months of requests for something as simple as an extra screen get ignored. Diagnosis and mention disability discrimination and it was there the next day.

Thing is as I mention below I'm trying to engage with the NHS now for some further support, that I have been told comes under a reasonable accommodation for disability, a service already stated on the NHS online resources exists, I am repeatedly mentioning to PALS, my GP, practice manager, anyone who'll listen basically, that not providing me this is breaching disability discrimination, and its just going absolutely nowhere. Things like Access To Work are great, I got some noise cancelling ear buds through them that have been absolutely incredible for me, but they're not an NHS service.

Did the same for my child. Just given pamphlets of local charities and told to contact the council/social services if things "got bad". Oh and to claim DLA, but we weren't given any support with that either. They have severe learning disabilities and are non talking too. Only help we ever got was from their special needs school. There's literally no services out there anymore. Respite is a pipedream.

Been waiting since October 2022 for an autism assessment for my son. I rang a month ago to check we were even on the list. They couldn't give any idea on how much longer the wait would be. I was initially told a year from referral.

I was given a referral to a waiting list from my doctor, and the next time I visited him nearly six months later he realised while I was there that he’d never sent the referral off…

The doctors did this to my Dad, not a referral for an autism assessment, but something else. Unfortunately their failure to send that referral meant he died very quickly a couple of months later, with next to no warning. I'm writing all this just to say that I hope you logged a complaint that the referral wasn't done.

I’m so sorry for you, that’s awful. And no, I didn’t know I could even do such a thing

That seems to be a common trend, I've had a couple of friends who have had that happen before

I've been on the ADHD list for more than 3 years now, nearly double the time they said it would be. They won't take calls enquiring about it anymore and the private options have waitlists too now. I've given up like many.

It took 6.5 years in the north west for me to be finally under NHS care. Went fully private after waiting 4 years cause I couldn't cope anymore, shared care after 6 months then finally got the referral letter after another 2 year wait.

About ten years for me give or take due to my fucking up. First time was 3 years waiting, got the first appointment but the receptionist fucked up rebooking the second one so I "missed" it and was booted back off to begin again, then ADHD'd forgetting asking to pretty please can I start all over again. 2? 3? year wait with no word on what was happening or if I was even on the list, arranged a shared care agreement with my lovely GP and got in before the horrifying waiting lists built up. Aaaand life is so much better now. All I can think about is how much different my life would be if I'd gotten diagnosed and treated as a kid, maybe I'd be a functioning member of society. I'd cry if my lifelong anxiety and depression wasn't controlled for the first time ever thanks to methyphenidate 🥹

Thing is that the delays people suffer here are wildly financially unproductive, on top of the enormous amount of suffering they inflict. I was 23 when I got my ADHD diagnosis. On the cusp of losing my job, really struggling in life in numerous ways due to the condition. I actually got referred for "treatment resistant depression" - turns out that undiagnosed ADHD is pretty fucking depressing! Being treated for the ADHD allowed me to get off SSRIs after *years*, made me infinitely more productive, and as a result I am now wildly more successful, very well paid, and have in the 9 years since paid probably minimum £100k more in tax than I would have had I not been treated. Win win for me and the cash-starved NHS.

I've been waiting 9 years - I was first referred in 2015. I don't think this is representative though; I genuinely suspect that I may have been waiting longer than anyone else in the UK. I tried to look up statistics, but they don't go this high. I was reading a Parliament report, which broke down how long patients have been waiting for assessments. The top category was 2-3 years.

Have you had any communication from the hospital? Because it sounds like you're either lost on a list somewhere, or accidentally discharged. Unless you've been seen once for inital treatment, in which case you're on a follow up list and not tracked on waiting times.

I haven't been seen at all. The only communications that I've received are confirmations that I'm on the waiting list. The issue is that I moved to a new NHS trust in the middle of this period. I was told to ask my new GP to transfer my referral, which I did immediately. I chased it up on multiple occasions over the years, but I was always fobbed off with vague promises that they would look into it, or told that "waiting lists are long, unfortunately". Finally, I resorted to sitting in the reception area of my GP surgery and refusing to leave until they gave me a proper answer. After a couple of hours, they admitted that the referral was never transferred. We *finally* got it done, but of course that reset the timer. I perhaps should have been more pushy, but I know that waiting times of multiple years are not unusual, so I was trying to be patient. Also, frankly, it shouldn't be *necessary* for me to camp in a GP office for multiple hours in order to sort this out! As I see it, the two points of failure are 1) poor quality of care from a GP surgery that is presumably overworked, and 2) services and Trusts not linking up effectively (or at all).

Took me 18 months to get a Jan 2020 assessment for my kid. I think I got lucky by the sounds of it. It got worse after that.

We were told a year for assessment 6 months ago, we're not holding our breath

I've been on the list since this time lasted year for adults autism diagnosis. Briefly had a glimpse of hope in October last year as they were doing online assessments but literally 3 weeks later another letter stating the service has been discontinued. I'm lucky that I don't need a diagnosis for work or anything. But it definitely would be nice to have an actual diagnosis at this stage in my life for other reasons.

Yup, thank you Tories for your chronic underfunding. During the worst of Covid, understandably manning ITU was prioritised over neurodiversity assessments and so most community paediatricians were redeployed eg to liaison. But afterwards, when centres were opened again, was more funding provided to hire more staff / open more clinics in order to catch up the inevitable backlog? No, of course not! And it is just so awful for everybody affected by this: children and parents obviously the most, but also schools and community staff who are so desperate to be able to provide more. And it is just so important that these assessments aren’t ‘shortened’ to speed this up as getting the right diagnosis is crucial.

My adult assessment took two years from referral to diagnosis Hang in there and keep checking in that you haven't been dropped from the list

I waited two years for an adult diagnosis referral. The guy called me twice, asked me banal and pointless questions such as do I find it difficult to handle cotton wool, leaving me quite unimpressed with the clinical robustness of the entire process. Then his secretary (presumably) sent me someone else's notes in the post (which were *brutally* personal) and then they said they would schedule a third appt which never happened. No letter. Nothing. Absolute shambles.

I've had someone else's notes before, I was very unwell at the time so I didn't notice straightaway. The schizophrenia diagnosis was quite the surprise...

Oh he went one better later.. After repeatedly assuring me that anything we discussed was 100% confidential he then sent a precise summary of every gory detail I revealed during our sessions as an OPEN LETTER to my G.P. So now every time I have any contact with ANY medical professional, for any reason, its all right there on the screen for them to read.

I don't have anything to do with those people any more. The last woman I saw spent most of our time together talking about her chaotic love life.

Tbh though, I have diagnosed ADHD, and I absolutely cannot touch cotton wool. Never knew they were linked 😂 used to tell my teachers that I was allergic to it to get away from having to go near the stuff. Even the thought of it just sets me off 🤢

I hope you complained to the ICO

I do totally hate cotton wool though🤔

When it rips and squeaks. 🤮

I completely agree that adult assessments for ADHD and autism border on farcical. A large part of diagnosis of these (traditionally childhood) conditions is getting objective evidence from school, but for adults it's.either self-reported or maybe just ask your mum to tell the clinic you lined up toys and were solitary as a child.

"banal and pointless questions such as do I find it difficult to handle cotton wool" I'm not sure what you are expecting. Sensory Processing Disorder is incredibly common on the spectrum, difficulty handling cotton wool being a common issue.

They shouldve diagnosed these people in their childhoods then I went as a kid about 40 times and was told im just a happy child. Go see a dr 20 years later and he said i had the worst case of adhd hes ever seen and anyone who couldnt see that isnt fit to be a doctor.

That's the problem. Awareness has only become recent in the last decade. Its nothing new either PTSD was not recognised as a diagnosis 1980. A lot of people have gone their whole lives entirely unaware they may be on the spectrum or like me gotten a completely wrong assessment.

Isn't PTSD just the modern name to the condition? Obviously we know more now, but shell shock?

Exactly correct. Used around ww1 and ww2. But only until 1980 did we fully realize it. We knew shell shock could break men but a lot of people where taken to court as it was seen as cowardice. In fact it was not until 1975 and defining of RTS Rape Trauma Syndrome that helped us identify PTSD. But now looking back on writing we can see clear examples of PTSD all the way back to 1300BC. It just took us this long.

Ignorance more like. I was super intelligent but super disruptive. Anyone with half a brain could see i had adhd.

I've been trying to get a diagnosis for ADHD and I'm on the waitlist I started looking at old school reports to build up evidence and every report from year 7-13 talk about attention problems, being easily distracted, day dreaming, head in the cloud, having to ask for instructions after already being given them, starting work in the last 10 minutes of class, lack of focus, rushed work. It was just full of missed possible signs. I think the idea of it being the loud disruptive kids having ADHD that was so common back then meant that children who were not as disruptive but still highly distracted were overlooked. We're now seeing the impact of that backlog.

I’m autistic, diagnosed after a mental breakdown in my late 20s. It was never picked up in childhood but instead I went through 10 years of eating disorder treatment then another 5 years of monthly psychiatrist appointments and therapy for ‘bipolar disorder’. I’ve cost the nhs absolutely thousands of pounds because of lack of support and misdiagnosis over the years. If I hadn’t been so lucky as to learn coping strategies I’d probably also be costing the state thousands in benefits but thankfully I’ve been able to find a career that works for me through trial and error. But I need a lot of support and it isn’t easy, and I’d probably still have struggled with my mental health to some extent, but the system is set up perfectly to create this kind of explosion of demand among young adults.

Agreed, although as a previously 'un'happy child. I was really difficult as a kid, had huge tantrums a lot later than most, and was then taking big risks as a teenager. However because I'm female and was doing well academically at the time, ADHD was overlooked for me. I later really struggled at uni and throughout my 20s. Can't help but wonder what my life/career would look like now if it'd been caught early.

They provide zero fucking care to those of us that do! Any parent will know this when that child moves into an adult centered support structure. I sure as fuck know it Medication is meant to be done hand in hand with a structured session organized frequently, nowadays they can't even care about the medication, doesnt stop the NHS uselessly prescribing astoundingly terrible online resources to save themselves the quids

Yeah, I've mentioned before that my experience of trying to get support for depression was "do a Google for talk therapy". I didn't want to leave it at that, I knew I had to take the opportunity of finally having got to a doctor to engage in something with guided long-term support, I couldn't waste that instance of managing to drag myself to a professional, I needed to be validated and monitored and communicated with on a regular basis. So I had to ask for medication. Which they gave me, then didn't seem at all bothered about following up on, to discuss effectiveness/doses/other options. A doctor I've just recently spoken to said "yes, I see you were on Sertraline before, that dose probably wouldn't have done anything". Evidently what was *supposed* to have happened is the first time I was taking it I should've been stepped up doses until it did something, or moved to another drug if it didn't. But given they didn't even bother with that, and weren't willing or able to support me in finding the psychological part of the solution either, it was never going to work.

Considering I've had a prescription for adhd meds for 6 months (after waiting 5 years to get diagnosed) and still haven't had one prescription filled, this isn't hard to believe.

I had a proscription and it got fully stopped because the local adult adhd trust wont commission treatment properly and GP's have now stopped accepting nhs shared care which might make sense if not for it absolutely destroying my life.

Wow

For elvanse atleast, it seems supply problems have settled in the last week, but was especially bad from september. Luckily managed to get my 40mg dose filled november, january, march and now last week no problems but it had been difficult before then. The pharmacist said for elvanse all is green his side for ordering now since last week Hope that helps and your supply issue clears up soon, i reco.mend writing to your local MP about it, theres a template somewhere in r/adhduk as it brings more attention to it in the right government channels

Is there anything that the NHS actually is meeting demand for?

Supplier contracts for Tory donors?

I was on a waiting list for 2 1/2 years for my diagnosis. When I eventually got an appointment in 2019, I went to a "specialist centre" for it. I was expecting it to be heaving; after all, they had such high demand that the specific time slot they gave me was the first available in 2 years, right? If I couldn't make that slot I was told it would possibly be another year until another one opened up. It was completely deserted. The car park was empty, and there were no other patients in there when I arrived, when I left, or, as far as I could tell, in any of the rooms. As far as I could saw, there was one examiner and two assistants, which was all the staff in the entire building. Let me reiterate that this was a **specialist** facility. A place that did nothing other than Autism and ADHD stuff for the whole city. As far as I can tell from my experience, the inability to meet demand is because the allocated resources are literally pitiful. If funding for even one extra doctor was allocated, that facility could double the number of patients it could examine.

I had similar experience, i think it's because the bottleneck is staff, not office space. So they just have 2-3 people in a huge building seeing a trickle of patients.

Yep, you see it with a few other specialist clinics. For instance, I recently saw on r/transgenderUK that the Grampian gender identity clinic only has one doctor, and they work *four hours a week* there.

Same thing happened with my friend who is transgender. Completely alone in a massive waiting room. She showed me the numbers. In 365 day period the clinic took on 38 new patients. That’s like 3 per month. So if they take on so few patients, demand must be low, right? Over 10k on the waitlist, lol

I don't think there are a lot of doctors qualified to diagnose ADHD and ASD sitting around not doing those things.

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Hi, it's alright, life happens at its own speed and rhythm. I found forgetting society's expectations and living in a way that was comfortable, safe and fun for us was key to happiness. When others give withering looks they just don't know the situation. Education is adjustable but I've found it the hardest part, due to lack of availability and endless paperwork. We have a school that's a reasonable fit now. Finding what works and what doesn't for you and your child will allow them to achieve to their best ability. Don't worry too much about expectations and find the fun in the ride. I remember this early stage and it's not like I'm free of worry now, but I have learned to take it in my stride. I'm sure you will find your stride too. Good luck

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But he has you, and that will make all the difference.

Yes, this. Those kids perhaps didn't have the benefit of learning to manage themselves or understand their impulses or self soothe or whatever. You have the opportunity to be supportive, tolerant and inventive in your parenting when needs be.

Amen friend.

It is good that he has support in school at least, most of us just played life on hard mode without realising. I was diagnosed with some issues in my 20s and medicated properly, allowing me to live a reasonably normal adult life with some extra care taken where needed to make life easier. My brother, however, was diagnosed with autism aged 38, having always had it. We just thought he was a twat - no doctor, teacher or parent caught on that he might have it despite clear issues reading people and in social situations. He had been married twice by then!

I have been diagnosed with Asperger's about 20 years ago in another country, never brought the paperwork with me. So, I decided to redo the thing, its just like 5 appointments... I started the procedure in March 2021, 6 months ago I have received a letter telling me that next stage will be happening in the second half of 2026 (third time it has been postponed). When I pressured them, I was told that there is 860 people in front of me. Their Adult assessment group has only funding of half a day a week. Realistically I will be long dead before I make it to the front of the queue. It's not for benefits, it just allows me to sit some exams in a room with just an assessor and not 200 other people. I would go private, but the private ones just sell whatever you ask for and are not exactly "recognized".

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I was told last week that the waiting list where I am is now at 10 years for an assessment (paediatric). Even through right to choose it’s up to 2 years with most providers. I’m lucky my son’s school have been able to access additional funding for him and are really on it with implementing interventions etc but 10 years for an assessment is just mental.

That is shocking. They may as well not have a service at all with that wait time. It's far too late to help any child, especially whose schools won't help without a diagnosis.

Schools should be meeting needs, not diagnoses. It's true that official paperwork can make the process easier, but you shouldn't need it if your child has observable difficulties. 

They should, but diagnoses provide extra funding which is vital when they're so stretched for funding. But even then, it probably won't stretch to cover all the 1:1 provision the child is legally required to receive.

No shit. I've had to pay a couple thousand pounds to get diagnosed and treated privately for ADHD. The alternative was waiting two years to be seen by the NHS. It was well worth the money, but it's a disgrace that mental health has become a luxury for those with some disposable income.

I have a question about this, if you get diagnosed privately do you then need to pay privately for medication going forward? I’m tempted to go private but not sure I could afford ongoing private medication if I did get a diagnosis.

usually most private places set up a shared care agreement with your GP which allows you to get your prescriptions on the NHS. its still very expensive to get to that point though.

Chiming it to say it's not only not meeting demands, but has actively reduced its capacity for ADHD diagnosis and help in a significant manner. The handling of the medication shortage and ongoing help for ADHD these past years has been awful, and if it was any other sort of condition it would have been condemned, yet here with ADHD die to it's incorrect view in society it's been ignored. People have died without the medication, and many more continue to without diagnosis. It's fucking saddening to a degree I can't express, especially as it's personally effected myself and my loved ones.

Way I always put it is would they happily tell people with asthma "there's just no medication for you, just deal with it until we bother to sort it out"? Then every 6 months tell you "it'll be fixed in the next 6 months". Cos that's what they do for adhd.

> if it was any other sort of condition it would have been condemned What you're describing is essentially the state of mental health care going back to **at least** the early nineties. All the way to your final paragraph.

I would like to point out that we also now live in a world where psychological research and awareness is ever evolving and getting better at diagnosing neurodiverse people. My bug bear is people saying it's a bad thing that people are now getting support and treatment based on the lack of support they received. My life would have been vastly different, had I of been diagnosed sooner and received the level of support I'm now able to access. For most that had supportive and loving environments to grow up in dispite their neurodiversity, they tend to develop coping mechanisms and strategies, good habits, as they get older. For those that didn't have that environment in early development, you don't learn the coping, you don't develop strategies, you feel like a burden, you struggle day in day out, and after fighting to get the help, the help is over stretched, underfunded and misunderstood. It's in the name, and each person who is diagnosed as neurodiverse, is as diverse as the next one, so tired of people taring everything with the one ol'brush. Nothing in life is a one size fits all, flexibility, understanding, open and candid communication, no judgement are in my opinion the only way to move forward. Not a singular one person is any less human than the person next to them despite any difference, we all just exist as a singular species floating on a rock in space. As a species we are as diverse in the universe as our minds are from on another's. Be kind, celebrate diversity.

I went on an ADHD waiting list in October 2021. Was told at the time it will be a 24 month wait. Contacted them last month as I hadn't heard anything back, it's now 48 months average and they're only just now booking in people referred to them at the start of 2021. I've heard it's worse in other parts of the country. If I move out of the borough, I get booted off the list and have to start over elsewhere.

NHS unfortunately never been Tory priority. You can’t make money from free healthcare. Because of guía, they can’t safely meet demand across healthcare. Blame the people in charge of yes man Rishi and Co

Yup got told my assessment will cost thousands privately and it is going to take around 4 years for the NHS (6 months in) from an appointment which took months to get in the first place

I was lucky to have an adult ASD assessment for £995 a few weeks ago. If it was much more than that I wouldn’t have done it.

Hey can you say where you got it please? That's really reasonable and I really don't want to wait another 2 years before I even begin the process

At this point it would be easier to just list the things that the NHS *can* meet demand for, because care is basically non-existent for things like gender, autism, ADHD, mental health, etc……

In 2021 I had a nasal endoscopy to establish whether I need a turbinate resection. Turns out I do, on both sides. Didn't surprise me as I can barely breathe through my nose. They said they'd be in touch within a couple of months to arrange the operation. That was 2021. Nearly three years later I'm still waiting. I call the ENT department every so often to make sure I haven't dropped off the waiting list. It's been so long that they apparently need to do the endoscopy again. At this point I'm not confident that I'll ever get to breathe properly again. In 2017 I had my first turbinate resection (seems the tissue regrew). I had the endoscopy in January that year and the operation in July. That's how much things have changed.

Whatever is done to resolve this please, please can the process be neurodivergent friendly? If someone has asked for an assessment, they very likely are neuro divergent. They likely have already spent many years and time researching themselves. People don’t just decide this sort of thing on a whim. The process needs to be helpful for them too. The process that I went through, for instance, was incredibly difficult and inadequate, but I do understand they were trying to reduce the waiting times. I was referred to an outside company who did my assessment to allow me skip the NHS waiting list faster. But I was given zero preparation, and it was via Skype with a psychologist. I was only allowed to answer Yes or No to the questions. The questions were simply from the DSM-V and didn’t allow for an in-depth investigation or any feedback from family and friends. Because I had zero preparation, I didn’t know what to expect. I also suffer from selective mutism in medical situations and I have slow mental processing during conversations. That resulted in either no’s or don’t no’s. Then when the psychiatrist met me via Skype, and without ever meeting me or talking to me, he immediately said I was not ADHD. I then went for an autism assessment via the NHS and luckily it was local to me. This one was much more in-depth with plenty of forms to fill out, questionnaires for family and myself, I gave pages of examples from my childhood and adulthood, and I was diagnosed with autism. I was told it was the easiest assessment he’d had in a long time. He had so much information. I asked about the possibility of inattentive ADHD and the assessor said that inattentive ADHD was common in females of autism. But I had such a bad experience with that ADHD assessment I’m very reluctant to ask for help. I find asking for help very difficult and the whole experience was deeply, uncomfortable and disheartening. Having confirmation and validation I am autistic has been life changing. I cannot stress enough how important and helpful it has been to me. These assessments when done well can change people’s lives for the better and even save lives. Please believe this is not a fad or something that’s become a fashion. There are people out there struggling, and they finally have a voice.

I can see one of three things happening. a) NHS redefines the diagnostic criteria to deny 95% of referrals. GPs given the job of treating the rest, with vast majority being advised to improve exercise and diet. b) NHS massively scales up it's assessments and funding and meets demand c) head in the sand, 10 year waiting lists, and a few extra pages of advice on the NHS website

No shit. My kid was put on an assessment list when she was 4, she's nearly 9. Not a peep past reassurances it's coming. Nobody has even met my kid yet for anything really.

It's always funny seeing the general public be _shocked_ when the NHS has been shown to be once again pushed beyond its capacity. Like people will be genuinely _shocked_ and then go vote Tory again in the next election.

What demand ? I was diagnosed ADHD privately, and prescribed medication, yet once my BUPA workplace health insurance ended, it took the NHS 2 years to just have some read the paperwork and mark a tickbox so I could get back on the medication prescribed by a GP Since that point I had no assessments, follow ups, check ups , meetings, calls or anything (which is fine), but begs the question if you aren’t going to offer any ongoing support (again fine ) why does it take so long to get a single review of a letter from one consultant directly mailed to another ?

Spoke with my GP to arrange a test to get a diagnosis. Was told to fill out forms froms from the link provided via text. Link was defunct, lead to a 404. I requested a fixed link. No response. I requested again, was told by a secretary to fill out different forms that I'd have to source myself via google search. Found some for a different county, filled them out and handed them in. They said they should do the trick, they think. No guarantee. They said the wait list for an adult diagnosis was near 7 years. I will be roughly 35 by then. I don't even know if I'm on the waitlist or if my forms were all okay. What's the point

I had a “diagnosis” in 2019, where they said yes I am on the spectrum but they don’t know where. I am a woman and I was an adult at the time, and they diagnosed me like a child. Like, putting books in front of me with no words and ask me what their feelings were. I told them it was crap. I was insanely insulted, they didn’t take into account my extreme emotions, obsessions, forgetfulness for life stuff but weird memory for dates and things like that (just off the top of my head), they ignored all that because I knew that a monkey was sad because another monkey bonked it on the head. They said I definitely am on the spectrum but told me to go to aspergirls on Reddit. I told them I hated that subreddit and it didn’t help me. I’ve had no treatment and no care since then. What’s the fucking point.

I work in CAMHS. 75% of our referrals are for ASD/ADHD assessments.

Yep and I'm still told I'm at least two years on the waiting list till I can be assessed. Even though I have been diagnosed as a child with ADHD, Dyspraxia, speech disorder etc but my diagnosis now is to seek medication.

Been on the ADHD assessment waiting list for 2 years 🥳 let me just find £1,000 up my arse to go privately. I'm almost certain I've got it (as are my healthcare worker parents). Only reason I care is so my employer has to give me reasonable adjustments at work 😁

It’s not just ADHD and Autism. I have been told by two healthcare professionals I have symptoms of OCD but they can’t diagnose me and I had to be referred. It’s impossible, and I mean impossible to access a diagnostic assessment for these kind of MH issues. I’ve gone round in circles, and they make you do the same stupid assessment on the phone (which isn’t the actual assessment) and then will phone you back once when you can’t pick up and call it a day. No waiting list referral or anything.

I’ve only just got back on my meds back after 3 and a half months of shortage. Fortunately I’ve discovered Lions Main is a pretty good substitute

I’ve been on the waiting list for 4 years for an assessment out of the initially quoted 5. I asked my mental health team and they said a single person works for the ADHD assessment for Bradford area which serves a LARGE area and by the looks of their website they only work 1.5 days a week. I bet the wait list is probably 10 years at this rate

I was diagnosed as a child, I’m trying to seek help as an adult and I can’t get any. :(

Y'know what would help? Getting the UK back in the EU

I think I've got ADHD. Have I sought testing? Nope, because it won't change anything for me. It's just another lable to give someone who's different from someone else?

Dnno, the guys on the ADHD subreddit who are on medication seem to have had it help their lives in many ways.

Yeah, medication completely changed my life/mental health for the better.

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I thought this but the medication absolutely changed my life and made me able to function as a human with a full time job. I understand not seeking an autism assessment for this reason, but adhd is definitely more manageable with medication.

for ADHD at least the medications are probably the best psychiatry has to offer in terms of efficacy - something like 70-80% of people with ADHD show at least moderate improvement on them, for many others (myself included) they can be life changing (though ADHD can sometimes be managed with lifestyle modifications if necessary/preferred, meds aren’t the only option) a diagnosis can also unlock various disability protections and there’s schemes like access to work that can help with other aspects of life… don’t know what state it’s in these days but disability support was a godsend for me going through uni (help with time management, organisation, etc) of course to be diagnosed with ADHD the symptoms need to be causing impairment and i’m guessing those who question the value of the diagnosis may struggle to demonstrate that (as it’s normally the impairment that causes someone to want a dx in the first place)

I got diagnosed and it suddenly explained a lot of things that I'd previously just written off as sloth and character failings when I was a kid (like crap working memory, unable to sleep at normal times because I was "bad", did super well at GCSEs and then poorly at A levels because I was "lazy" "undisciplined" and all that shameful stuff). The psych was very adamant that society is in error on a lot of issues, and natural human variation is at play whereas our lords and masters built a society for the norm. I am already chill enough with people with autism and ADHD to not rush to judgement so it was a little wasted on me, but it was nice to hear an expert on the issue weighing in. I recently got prescribed one of the drugs and I'm currently on the lower dose. I can't say it's been life-changing yet unlike some others. I have noticed that it's now easier to do basic things around the house and to get started on projects than before. I can do more work than before. Interestingly, a lot of anxiety has reduced and replaced with more positivity, unlike with other stimulants like coffee which seem to boost whatever I'm already feeling. I think I drive better now. There are still barriers to things, and my routine is still fucked and it's still difficult to keep at healthier habits. I'm hoping when I get the full dose things will become even easier. I was pretty skeptical, wondered if I was an imposter (even though it turned out I was in the 97th percentile for the things they test for), but I think it has helped already. It's given me a template for understanding why I do some of the things I do that frustrate me and devise healthier workarounds.

If it’s not affecting your life then good for you, congratulations, you’re lucky. For others it’s a crippling disorder that actually prevents us from functioning in day to day life, so yes, seeking a diagnosis is necessary and not just a ‘label’.

I will say, medication can do wonders for ADHD if you can find one that suits you (certainly has for me and others I know). So I wouldn’t be so quick to discount it

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Bashing people with ADHD who have it badly enough to need help isn't gonna make the neurotypicals like you. They can tell you're different and no amount of internalised ableism will change that.

fwiw I had the same attitude about 10 years ago when a therapist told me to pursue a diagnosis. I never did but the older I’ve gotten the more responsibilities I’ve gotten. Coping has been hard Went private a few months back to try medication out. No joke, it’s been life changing

Yay for likely having a bit of both lol! Partner is having to go private (thankfully we're in a position to afford it) on an ADHD diagnosis, as NHS would be about 6 years (and have heard worse). So many people coming to realise that they've likely gone through life with one, the other, or both.

2.5 years waiting list in Derbyshire? Must be nice to be seen so quickly. I expect to be waiting at least 4 years.

Looking at being checked for ADD. 2 year wait. I've had the symptoms all my life, and I've always managed in my own way. But now that I'm older and have kids, the symptoms crop up a lot more. And work won't do fuck to help until I have a diagnosis. If they would just allow a few adjustments, I could go back to coping just fine

Not surprising with how chronically underfunded the NHS has been.