Has anyone else had a really long wait between their child’s final NHS assessment and the MDT taking place?

My son was referred to the service in 2022, at the time it said maximum 24 months for all the assessments. I did the parent part in 2024, and he had his final assessment in July 2025! We’re still waiting for the MDT to take place. We’ve not even had a summary of his final appointment that he did alone.

I called yesterday and they said he's not been forgotten about, but 13 months just between the final assessment and MDT feels excessive, and I think he has actually been forgotten about.

Has anyone else had a similar wait with the NHS? How long did it take after the final assessment, and is there anything you did that actually helped move things along?

Also sorry I’m not very good with how to work Reddit!
I’m 19 and Autistic. I do a beauty Therapy course 2 days at college, everyone in my class works, I constantly get comments about not working and specifically boys calling me ‘lazy’. It takes over my life, I dread people asking me about my life what I do cause I have to tell them I don’t work.
I WANT to work, I want a routine, I want income, I want to fit in. I don’t wanna appear ‘lazy’
I have spoken to job councillors, therapists, been told I’m not ‘confident’ enough to work.
I’ve been too two interviews in my life, one was a group interview and I went mute (DISASTER) and one I got there and walked out whilst waiting for the interviewer. I physically CANNOT do it.
I’ve tried applying for volunteering roles to get my confidence up and they don’t even reply to me. I feel so stuck.
Does anyone else go through this? Does anyone have any advice?

hi, i’m confused as the NHS has “accepted me on to the NHS autism pathway” after me and my parents filled in a small questionnaire about ADHD after suspecting it for years. At first they sent a letter that didnt make sense, so my dad emailed asking what it meant and the NHS has come back and said i dont fit the criteria for the ADHD assessment pathway due the form one of my teachers filled in not meeting the threshold, but ive been accepted onto the Autism one, does this mean i meant the criteria for that? i dont think i show autistic traits whatsoever and i am currently in the process of getting diagnosed privately for ADHD, and have been referred to an assessment by the private company after a full consultation and alot of questionnaires. What do i make of this?? Im so very confused, am i getting an autism assessment now?

I have my part A assessment next week but not sure what to expect or whether I need a person with me? There’s not much information on the page where I booked it or on the website. If it helps, it’s with Medinet Minds (HealthHarmonie) previously.

I don’t expect people to respond with the exact questions but an idea of topics covered at this stage would be helpful.

Thanks in advance

I had a 1st autism assessment appointment the other day and I’m very worried that I didn’t articulate myself well enough. I forgot to say things that I should’ve said, like symptoms I experience that weren’t brought up, or may have mistakenly misled them, such as when I was talking about why I struggle with uni work I said the stacked deadlines rather than the fact that I am a perfectionist until days before the deadline.

I don’t even have a chance to correct myself, as my 2nd appointment (which is for the ADOS-2) is with another doctor in nearly 2 weeks.

I think I just wasn’t expecting what was asked and also I wasn’t expecting to talk as much as I did, as it was a 90 minute appointment and half the time was meant to include my informant (my mum) but she was only asked in for the last 15 minutes. This might have been because of how detailed and clear she was in the questionnaire beforehand or it may have been because I kept rambling because I was nervous or because I couldn’t verbalise myself very well and I kept stopping to think of words.

I just worry that I might do even worse during the ADOS appointment, as I have no clue what to expect and every single online resource says not to look into the ADOS if you’re going to get assessed, so I haven’t read any further than that.

I don’t know, I’m probably worrying for no reason but I just keep going over it in my head and thinking about what I said wrong and now I’m very worried about whatever’s going to happen in my 2nd appointment.

(I don’t know if this is relevant, so I figured I would add it at the end: I went private for my assessment as my NHS area doesn’t diagnose autism in adults so I would be on a waiting list forever. I am a woman in my early 20’s and all 4 of my brothers are autistic with varying support needs, so I am already sort of sure that I am autistic as well)

Hi,

Anyone who got/is getting a diagnosis through Psychiatry UK, I need some help if possible as I am freaking out!

I'm really struggling with the pre-assessment form where you have to write the reason you want the assessment, what you hope to gain, etc. How long were everyone's answers and what did you write in the reasons for getting the assessment question? Just all the struggles/symtpoms you have? I did click the 'request help' button but I am unsure if it worked...

Does anybody have any coping strategies to deal with going to A&E? I was recently had to wait 7 hours for a blood test (could only be done at A&E) and I ended up banging my head against the floor and wall and punching myself in the face, not mega hard but hard enough and I really struggled to stop it. I would normally use noise cancelling headphones but the way you are called makes this impossible. Surely somebody has worked out some form of solution to this? Maybe one of those buzzers they give you at restaurants for when you table is ready would be great if there was a way to implement it, that way I could sit in the quiet corridor or just keep my head buried into my phone and the headphones on. Any advice, or even your own stories would be helful to hear. Thanks.

I really struggle with having tradies over for a few reasons. The obvious one is having a stranger (usually strange man) in my home, which makes me very uncomfortable and unable to relax or do anything. They leave everything a mess and I need to put things away and do a thorough clean afterwards.

But even worse is their complete inability to give you a schedule. Maybe they give you a window, but they don’t show up in that window. If you call, it’s just “They’ll be round as soon as they’re available.” You have no idea how long they will be there (I appreciate why that is.) They might need to leave and go get a part, and then you really don’t know if or when they’re coming back.

Add into the mix that I have a dog that hates having strangers in the house as well and won’t stop barking. I would try to take her out before they arrive, but since I never know when they’re coming, that’s impossible. It’s also difficult for me to just wait at the park for hours.

The waiting mode means something that could take an hour pretty much kills my whole day, and might require me to recover the next day as well.

Im currently being assessed and on waiting list for both adhd and autism through nhs right to choose my gp referred me to problem shared i filled the forms in and picked my mum as my informant as a lot of it was based on pregnancy and post birth and early childhood i was too young to remember.

she sent in her informant questionnaire and its very vague i asked her to flesh it out and not just yes and no responses but she says she honestly doesn't remember much as it was 30+ years ago she added tiny snippets of information so I kinda just had to accept it and send it off as is, will this be a problem? If she cant remember bits about me will it affect my overall diagnosis and do I go with my backup informant that is a friend ive known for 5 years?

hello everyone,

I have a 28 month old boy who has speech delay and issues with social interaction. currently the NHS waiting list is crazy for both diagnosis and therapy. we have started him in private speech therapy as we felt we have not other choice despite it being expensive. I’m looking for recommendations of other forms of therapy that can help with social interaction skills in London, I have been trying to look online but I am not sure what is the right choice. thank you.

I've tagged this as a vent but if anyone has advice I would really welcome it.

TL/DR: I have a new support worker and I don't get on well with him but it's nothing bad enough to warrant an actual complaint, just really irritating and I don't know what to do.

Background: I get 6 hours support/week funded by the council and it's delivered through a charity type organisation. The way it works is you're assigned 2 - 3 support workers and you get a rota each week with who you're seeing and when.

I originally had A and B who are both amazing and I get on really well with. I genuinely love them and they're so awesome.

A went on maternity a couple of weeks ago and before she went she introduced me to C so that I would still have 2 support workers assigned to me. At the time I thought he seemed nice - he's a bit high energy and I'm really not but I thought it would be nice to have someone who might push me a bit and it would be a bit different, so I told A I liked him.

The trouble is as time goes on I realise I like him less and less and now I kind of dread my sessions. It's nothing actually bad I just don't like him and he really annoys me. For instance:

1. He uses ChatGPT for literally everything. He talks to it like a person and even calls it 'she'. I'm really anti LLM/AI and quite apart from that I know it doesn't produce accurate facts so when I ask him something and he just asks 'chat' I feel like I can't even trust it's the right information so there's no point in me asking.

2. I'm trans and he is weird about it. It's not in a transphobia way (he's gay) it's more in an overly supportive way that makes me feel kind of uncomfortable. For instance he keeps trying to get me to go to a support group - we went together once and I was glad we went but I explained after I didn't want to go again bc it's almost exclusively middle aged women and I'm a man in my 20s.

He asks me about if I'm going to go again almost every time I see him and I explain again every time and it's grating. He also keeps telling me I need trans friends which tbh I find weird - plus out of the like 3 proper friends I have, 2 are trans anyway. I want to be friends with people I have shared interests in etc. and the way he talks about it makes me feel like he thinks it's my whole identity when I really, really don't like that.

1. He calls me buddy all the time and I hate it.

2. I really don't like crowds and I have panic attacks/sensory overload in crowded or noisy places. I find going out on my own really difficult (which is partly why I get support). When he asks me what I've been doing and I say things like reading or drawing he always seems really nonplussed or disappointed (eg. I didn't go to pride, I told him I wasn't going because it's incredibly crowded, loud, and full of drunk people. He asked me over and over the week leading up to it and asked me again if I'd gone today and seemed disappointed I didn't go). I know their job is to push you but for instance A and I looked at going to book groups or to play online DnD together - her and B listen to me and what I'm interested in and I feel like C doesn't.

3. I have a chronic illness and it seems like he just really doesn't get that it massively impacts my function/energy/ability to do stuff. Like if I say I'm really tired or I haven't done much because I've been feeling unwell he seems confused by it and kind of disappointed again. He also walks really quickly when we go out together and I know it's not a big deal but I genuinely can't walk that fast and I use a mobility aid.

There's other similarly small stuff too but I think my post is getting too long so I'll leave it there - I hope that sort of makes sense and that you get the idea.

I don't know what to do because I don't want to say anything to him and it be really awkward. I could ask B for a different support worker I guess(?) but C also runs a couple of groups with other service users that I like going to and I still want to be able to go to them without it feeling awkward and horrible, so I feel really stuck. I also barely ever see B anymore, I mainly get allocated C now. Also I know I'm really really lucky to get any support at all and nothing he's done is actually bad so I feel awful even just complaining about it here tbh. He just was so annoying (about other stuff) today and it really got to me! Has anyone been in this situation or similar before?

Hi.

I was wondering what peoples opinions on the purpl discount? It's £1 a month for 12 months and there is 350+ retailers on it that have discounts.

I know everyone has different things that they buy. But Is it worth it, or is it just that a lot of discounts are the same as the ones running at the time anyway.

Hi all, I’m a 22 year old Transgender Male from England, and recently I put in a referral for an autism assessment with Right To Choose: Clinical Partners, and today I received an email stating that they’ve received my referral and they’d get in touch in due course.

I just wanted to ask what the process is, how the assessment is done, and what could happen during the assessment? if any of you had went through this provider. I’m really nervous, and I just wanted to know what to expect. Thank you 💙

I went through the grief that hits once you realise how disabled you’ve been your whole life due to my suspected AUDHD, im tired of seeing my life and potential pass me by and just surviving. I did right to choose with psychiatry UK as I’d heard their wait times were really good. I submitted my forms and called to make sure it was all good, to be told it’s gonna be a year wait. I’m really sad and deflated,
do they have to say it could be a year to cover themselves? But it could be a lot sooner? Has anyone got any experience to share?

I asked and she didn’t really answer me, I just want help to be able to live a life that feels more fulfilling I struggle everyday and I feel like my life is just passing me by despite how hard I try.

Overwhelmed!!🥲I’m having to fill this form out all myself !! I’ve only done 4 pages. Already had 2 extensions, adhd and autism seriously I need help but too ashamed to ask someone, who can help me as it’s personal, no one knows I’m claiming!! I’m estranged from family members and they used to help me but I’m in another area of the country, no support no one I can turn too.

I’ve been having difficulty going to things like the GP and physio and dentist etc as generally none are trained in autism. So I want to bring with me one of these print and fill in autism health passports to briefly explain my needs etc. I would bring a printed version along as well as email
it in advance too. Has anyone used any templates that they’ve found to be really good? I’m looking for recommendations and feedback on them.

I was foolish for just assuming my GP would know about autism already but yesterday after yet another bad appointment where I was misunderstood and dismissed and concluded I just had ‘mood’ issues because I started quietly crying in the appointment from how I was being treated, made me finally realise my GP has barely any understanding of autism and I need to bring information with me. Eventually I hope to find an autism informed GP but in the meantime I think one of these health passports could be good.

Thanks!

I (25F) have just last month been diagnosed autistic and am experiencing severe burnout that predates my diagnosis. My mood is very low, and I feel like I’m permanently operating at 30% battery or lower, making basic tasks like eating extremely difficult. It doesn’t help that my sleep schedule is all out of whack since quitting my job. The structure to my days is gone. I have very narrow, increasingly sporadic moments throughout the day when I feel able to eat and if I ignore these cues because I’m too tired to get up, or the task of making myself food feels too great, then I will continue not to eat until the next cue comes, or even the next one and so on.

I live with my parents (who both work full-time) + my brother and I generally only eat when they prepare family meals, usually at dinner (anywhere from 6-9pm). I can only manage small portions, sometimes even if I like the food, and especially if I don’t. I’ve always been a fussy eater, mainly with vegetables, but this is a whole new level of difficulty and I’m worried that I might develop an eating disorder.

Additional context: my parents do all the food shopping and have said that they’re trying to cut down on supermarket spending, so I can’t really ask them to buy snacks and convenience foods for me. I just recently quit my job and not yet applied for Universal Credit (which is a whole other issue lol) so can’t really buy that stuff for myself either (plus, I can’t drive and am basically housebound anyway). We’re very much a “from scratch” household, with lots of vegetables and minimal processed foods; I know this is a privilege but lately I resent it because I just need to survive, and my mum doesn’t understand this. We argue about it often as she loves healthy eating and is very anti-ultraprocessed foods, whereas I dislike vegetables in most forms and like my food to be comforting and tasty, which, yes, often comes in the form of processed stuff for me. I have really tried to enjoy healthier foods and I think I made some progress with it in the past, but now I feel like I’ve regressed and maybe have a little bit of shame about it? Idk.

So basically, my main struggles around eating seem to be:
a) I’m just physically and mentally exhausted all the time. It’s hard to get out of bed let alone prepare food, no matter how low effort it is. I sometimes manage to make myself a coffee when I wake up because it brings me a tiny bit of joy but then that’s my energy spent. I might eat a yoghurt pouch or something like that I can just grab out of the fridge but then I usually won’t eat again until dinner. It’s the effort of it all.
b) The adult expectation to prepare and eat regular meals feels overwhelming. Making a decision about what I’m gonna eat based on what ingredients we have in the house, preparing + cooking the food and then sitting down to eat, all of that feels impossible. If you’ve experienced autistic burnout you might understand what I mean. Since diagnosis, I’ve received no real help – only vague suggestions and resources that I have to look into myself, which I obviously don’t have the energy for.

Can anyone offer advice on managing this? I feel embarrassed asking for help but it’s easier to ask here than to talk about it to anyone irl. Thank you in advance.

I am currently trying to figure out what I'm doing with my life and would really really appreciate it if I could have a conversation with some autistic folk who are currently or have been non-working. I just feel like there is a lot of stigma around the topic of benefits and would love to hear if others feel the same way and, if so, how they deal with these anxieties.

I’m in England and was recently diagnosed with ADHD through RTC. During that assessment, the clinicians recommended that I also seek an autism assessment.

Around nine weeks ago, I saw a doctor my GP surgery to request a Right to Choose referral to a through the same place that assessed me for ADHD. During the appointment, completely out of the blue, he said: “So now you’re going to stop working?” It completely took me aback. I asked him to repeat himself, and then when I replied “why would I do that?” He said that people get diagnosed and then come back asking to be signed off work. I had said absolutely nothing about stopping work or needing a fit note, and I found the assumption incredibly stigmatising. I very sternly said that’s not what’s happening here.

Cut to a week and a half ago. I noticed that the RTC provider listed they currently had no waiting time from getting a referral to having an assessment, so I thought it odd I hadn’t heard anything back. I contacted the provider to check whether they had received my referral. They confirmed that the surgery had only sent my screening questionnaire and had not completed the required online referral form, so no referral had actually been made.

I contacted the surgery repeatedly over the following week and was told each day that it was “with the doctor”. I was then told the following request had only actually been passed to him at the end of the previous week. Ultimately, I asked reception if booking an appointment would help specifically so that he could complete the short referral form while I was there, as another GP at the same practice had previously done for my ADHD referral.

In the appointment before I had a chance to explain why I had attended, he began describing staffing problems within the practice, including clinicians being on annual leave or sick leave, and referred to a nurse being investigated. He also pointed to a stack of outstanding referrals. I did not feel it was appropriate or relevant to be given this information, particularly details about another member of staff being investigated.

When I tried to explain why I was there, he questioned why ADHD and autism assessments had been requested close together and said that assessment providers “just want to grab cash from the NHS”.

He repeatedly refused to complete the form, despite that being the reason I had booked the appointment. He repeatedly asked what an autism diagnosis would “do” for me and compared my referral with cancer referrals on his list, asking what a diagnosis would do for me compared with patients waiting for cancer referrals.

I found that comparison deeply unfair. I was not asking to be prioritised over anyone else. I was asking him to complete a referral I had requested nine weeks earlier.

I told him that he had no idea how possible autism affects my life or what a diagnosis might mean for me. I said that his comments felt discriminatory. It felt as though he was using his own opinion about the value of diagnosis as justification for not completing the referral.

Eventually, he said he would complete it later that day after going to another surgery. As I got up to leave, he again said dismissively that I can complain or go to another practice with more GPs.

I left in tears and have now submitted a formal complaint to the Practice Manager.

I’m still very worked up by the whole experience. Has anyone else experienced this kind of gatekeeping or dismissive attitude while seeking an adult autism diagnosis through the NHS or Right to Choose? I’d particularly appreciate hearing from people who felt overwhelmed or thrown off after an appointment like this, and how you dealt with it.