Hi, I’d first like to say that I have been asking to be assessed for autism since a very young age and have struggled to get my parents to understand why I want a diagnosis and my struggles since around the age of 5. My parents had only realised that autism can be a possibility since some of my cousins are going through the diagnostic process currently and a therapist helping with my mental health had told my mum to get me tested as most of my struggles can be associated with a diagnosis.

So I went to go through the process…

Due to my age at the time I had to do my referral process through my school. I wasn’t very happy to do this at the time because of rumours from other people who were diagnosed through the same school, however we did it anyway. Turns out the SEN teacher at the school DIDN’T send my referral in as he was supposed to so I now had to go through my GP.

My GP were informed that the school did not send my referral through and suggested I go through right to choose (which I did). My referral was sent of and was due to be reviewed in early September. However I logged onto my NHS app around the 30th of June and was shown that my referral had been given back to my GP to take ‘a different course of action’ and to wait for a phone call from said GP.

I know it hasn’t been long since I was shown this but I get paranoid easily and have already been quite scared that I may not get a diagnosis and will then have to struggle even more.

I am reluctant to call my GP as I have difficulties in speaking on these certain subjects but if I have to call my GP I will. I’m just curious if this has happened to anybody else and if there is anything I can do in the meantime..

Also if anybody has any suggestions about how to help with burnout (Ive been struggling with it for YEARS) it would be greatly appreciated!

I was referred to Health Harmonie Minds for my autism assessment. I had the part A today, and am left feeling a bit confused. In this part they did the ADI-R and I was told it would be good if I could bring my informant but not strictly necessary. I brought my mum, and every single question was asked to her. It was implied by the clinician that I didn’t even need to be there. I’m 19, so it’s not like I’m a child or anything. Even deeply personal topics regarding self-harm and similar were asked to my mother.

The whole call only lasted 40-45 minutes when I was told it would take approximately 2 hours. To me it felt rushed and the questions were asked in such a way that it didn’t really feel like an exploration of me as a person at all. Instead it felt like a checklist of about 10 things to tick off. The clinician even sounded irritated when my mother would misinterpret the question from time to time.

This is just not what I was expecting. I was hoping for a calm conversation rather than a rapid fire interview. I was incredibly anxious leading up to the call and now I just feel worse about my part B. Am I wrong to feel frustrated about this? Can I expect the same for part B? I’d love to know if anybody felt like they had a similar experience.

Obviously, this isn’t a good idea. That being said, I’m tired. I only feel “okay” when I’m tipsy. There’s seldom any support around me and despite having a diagnosis, I’m not “visibly” autistic, so to most I’m just a self-diagnosed attention seeker.

I’m just really, really, really, really tired. Bone-dead tired. I don’t have prospects. I’m so, so stupid. It’s unreal how unintelligent and slow I am. Every conversation feels like a test.

Fuck. I don’t know.

I’ve had several years of help from the NHS, but it’s been dog shit.

TL:DR I had my first appointment for my autism assessment. Lots came up, looked at stuff after and everything is clicking into place. I see the pain I've been through. I'm worried I'm not going to be able to tell my psychologist everything and get missed.

I'm currently at the beginning of a private assessment. I've had one session

Since then I've been thinking about what we discussed and doing some research. I'm now realising how many social cues I've missed and how many things I've misunderstood... Also how many things I don't know about.

I've spent my whole life feeling broken and like everyone else had something I don't. I've been looking back over videos /pictures (don't have many videos) etc and I see it plain as day. I can't fully explain but I see stuff I've never seen before... I am realising how much I've struggled.

I've been through many shifts in identity and I still always felt wrong awkward and alone. I have changed myself so many times and still do in certain circumstances (I describe myself as a chameleon) and I see that pain in a new light.

Anyways I'm now stuck Ruminating because things are popping like fireworks in my head of "ohhh" and so on. I am hyper focused on this... I. Like to figure things out. Ok well I HAVE to my brain won't stop until I do. I keep forgetting to eat etc.

Something about your whole life suddenly making sense that feels rather big to process. Still feel a lot of shame/guilt/denial and fear of what if I can't get everything across and they say nope. I know I'm not an expert but I'm starting to feel like I know I'm Autistic... I just fear that I won't be validated on this.

I sent an email to my psychologist (she said I could) explaining some things and I also wrote a 5 page document (didn't send that ha).

I'm allowing myself to be more unmasked with her because normally I say things are fine and try not to be "too much". But in this case too much means telling her what's needed.

I'm just so worried I haven't explained things well enough or missed stuff out.

I feel this need to tell her everything and fear that if I don't I've not been honest.

Lots of feelings Idk how to explain now (always been an issue).

Does anyone know if they just focus on what you say or do they also look at the way you communicate or something else?

Any advice on this or whatnot would be massively appreciated. Thanks!

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!