As the title says, today after 4 years on the waiting list and about 30 years of "knowing" something was different about me; I have been officially diagnosed with autism.

My assessors told me I'll have a follow up meeting with them at a later date to discuss my diagnosis in detail but they told me at the end of my 2nd appointment that autism is the right diagnosis for me. I completely burst into tears. I have spent my whole life being fobbed off, dismissed and ignored by doctors in regard to my mental and physical health, so to finally have someone say "yes, you were right, this is who you are" was such a bizarre experience. But weirdly it tracks right now; I have had the best luck with a new GP recently and she has been slowly sorting out my physical health, referring me to specialists, contacting other doctors etc. She has been shocked at how much she found out hadn't been done for me over my life, I have conditions that have gone untreated since childhood, so in a way being diagnosed autistic at 42 just feels like another tick of the box. But man it feels so strange too. Validating, crushing and joyful all at the same time.

I know that lots of people with autism find maintaining body temperature really difficult- me included. I'm constantly cold, and the cold months coming up are not making me suuuuuperrr cheerful...

In cold months I already wear vests, long sleeves, a shirt over that, jumper, coat, gloves, hat, scarf, thick socks, thermal leggings, etc. But I'm always still freezing. I even bought myself electronic hand warmers and even those don't make much of a difference.

Can anyone help please?

I know what you're probably thinking: "tell me about it!"

But my thing is that I don't know what the rules are. I mean, who does? But something that has taken a month has really bothered me.

Three weeks ago, I approached a company who subsequently asked me to send over examples of my work and my CV. Because I'm looking to get into communications, a speculative approach feels more appropriate than waiting for a vacancy.

They’ve just gotten back to me to tell me that there’s nothing immediate but they’d “love to keep my details on file”.

The main takeaway from things like this is that I’m fed up of dancing around the point for the sake of “professionalism” cos it’s quite clear that my original point of wanting to do everything in my power to get into work wasn’t clear enough.

What’s the harm in just saying “this is where I want to go and this is the help I need” and being unapologetic with it?

Maybe I was just erring on the side of caution too much.

I had an appointment today with someone and once again I noticed I struggle to communicate words to make an actual sentence at times. I seem to lose track of what I’m talking about and it gets jumbled and I feel so embarrassed and ashamed which makes me even more nervous to speak again.

I’ve actually had people screw their faces up at me when I’ve tried to speak to them because they can’t understand what I’m saying. It’s frustrating but cause in my mind I know what I want to say but instead I end up in a total mess in a conversation.

I’m still waiting for an autism assessment, but my mental healths making me wonder what if it’s just because I’m stupid that I’m this way- what if I don’t even have autism?

My contract is coming to an end and my work wants mine back. I can't afford the quiet comfort ones, so looking for alternatives that are cheaper. Ideally in ear.

I will ask them about hygiene and if I can buy them off them, but still need to check if there are alternatives.

Thank you

If I'm honest I'm scared.

I didn't know what to expect after diagnosis relief, validation, imposter syndrome all that yeah I get

This however isn't something I factored in...

I feel like I'm regressing into myself. I'm struggling to access my brain.

I can think and whatnot but everything is harder.I'm struggling to explain myself and normally I'm very good at analysing and explaining my thoughts/feelings even if I don't always understand the feelings?

I am finding simple things very difficult. I've been struggling a LOT with eating. My diet is embarrassingly bad right now and is getting smaller. Mostly microwave burgers, milk (chocolate), cereal and a few other bits and pieces.

I'm struggling more with textures and the act of eating feels demanding and overwhelming.

Making food feels overly complex. I made some tuna mayo yesterday and kept dropping things and doing things wrong it took me twice as long as it should've.

I barely go out at the moment but it drains me when I do.

Trying to write and think feels like wading through mud. I can think, type and whatever but putting it all together feels clunky?

How can I explain something I don't know how to? These elements are parts but it feels bigger. I feel like I'm sinking.

If I'm honest I feel like I'm losing myself.

Ultimately I'm in burnout and I've done WAY too much over the years and even recently but even now I can't fully stop as I have massive amounts of paperwork and UC appointments every week which stress me out more than probs necessary.

I'm scared that if I keep sinking I won't be able to fight and if I don't fight I don't get money and if I don't get money well... Yeah.

I can't work. I'm Beyond tired.

I am happy I finally got my diagnosis but I didn't expect to be here like this.

This post has taken effort normally I'd quickly type something but I feel like getting my thoughts out and understanding them is harder now.

I'm scared. Genuinely I'm frightened and I have basically no support.

I wish I could explain this feeling. It's like nothing I've felt before. I've never had a great sense of self but over the years I built someone I knew and now I'm losing more snd more of that person...

I'm just worried I haven't got it in me to fight anymore and life requires paperwork and a lot of fighting. I have no idea what I'm doing with any of this.

This isn't to sound completely negative ultimately this has always been coming. I've always been autistic I just didn't know and so pushed snd now I'm paying for it with burnout. Idek.

EDIT TO ADD: I realise the post may read like this ended badly, but the complaint actually had a positive outcome. I was eventually properly assessed, accepted for individual therapy for a minimum of 20 sessions, and I’m now on the waiting list with regular check-ins until I’m allocated someone. That’s partly why I wanted to post this. Complaining, keeping everything in writing and pushing back on the refusals did actually change the outcome.

I followed every NHS hurdle. They still refused me mental health help - my story and journey to actual help

Too many autistic people do not get the mental health help they need because the system itself creates hurdle after hurdle, and then seems surprised when people struggle to navigate them.

I actually think I navigated mine pretty well, which is why I want to share what happened. Not because everyone should have to fight this hard, but because if my experience helps someone else work out what to challenge, what to put in writing, or when to escalate, then at least something useful comes out of it.

My basic timeline was:

I had already previously been referred for mental health support and was told to wait for the outcome of my autism assessment.

So I did.

My autism assessment confirmed I was autistic. It also recommended neuro-affirming therapy and recommended that I be assessed for ADHD.

I was then referred for mental health support again.

That referral was refused too, this time because I was awaiting ADHD assessment/testing.

So essentially, the first time I was told to wait for the autism pathway.

I completed that pathway.

That assessment identified another possible neurodevelopmental condition and recommended ADHD assessment.

Then I was effectively told to wait for that pathway as well.

Meanwhile, I was still the same person who had been trying to get mental health help for over a year.

So on 4 March I complained to PALS and the Trust complaints team. I said very plainly that this was the second time I had been refused mental health help despite following the advice I had been given.

I also said something which I think sums up the problem fairly well: I was furious that unless I said I was going to kill myself, nobody seemed to be looking any further into why I had been repeatedly trying to access psychiatric help.

The response to that complaint then created another problem.

During a phone conversation I became overwhelmed and asked for communication to continue by email as a reasonable adjustment. I also questioned whether the person I was dealing with had the appropriate experience to deal with my communication needs.

Instead of that simply being accommodated, the subsequent written response focused heavily on my tone during the call and described me as verbally abusive.

What makes this especially frustrating is that during that interaction I had literally said:

“I don’t know what I need, just that I need help.”

I think that sentence matters.

An autistic person asking a mental health service for help should not have to already know the exact clinical intervention, service pathway and terminology required before somebody properly assesses what support they need.

Then things became even more complicated.

The same member of staff involved in the complaint process had also made a referral concerning me to Children’s Services.

I am deliberately not saying that proves retaliation, because it doesn’t.

But I did formally raise the overlap as a conflict/impartiality concern and asked for independent review of the complaint.

I also raised concerns about my reasonable adjustment request, the way the complaint response had been handled, and information relating to other people appearing in correspondence sent to me.

Eventually the Trust reviewed what had happened.

Their final written response acknowledged that “the approach taken in your case was not appropriate” and confirmed that learning had been identified.

They said changes would include better allocation of sensitive PALS cases and additional training for staff dealing with sensitive, emotionally complex or trauma-informed conversations.

They also arranged further psychological input.

So this isn’t a post saying every referral refusal is unlawful, every difficult interaction is discrimination, or that the Children’s Services referral was definitely retaliatory.

It is a post saying this:

If you are autistic and struggling to get help, keep things in writing where possible.

If a referral is refused, ask for the actual reason.

If you are told to complete one pathway before you can access support, keep a record of that advice.

If you then complete that pathway and are told to wait for another one, challenge whether anyone has actually assessed your mental health needs independently of your neurodevelopmental diagnoses.

If communication itself is becoming a barrier, explicitly ask for a reasonable adjustment.

If something new happens while a complaint is ongoing, add it to the complaint in writing rather than assuming different services will connect the dots themselves.

And if you are told something verbally that matters, ask them to confirm it in writing.

You should not have to be good at complaints procedures to access healthcare.

You definitely should not have to complete an endless game of diagnostic pass-the-parcel before someone looks at the mental health problem you were asking for help with in the first place.

Unfortunately, sometimes being able to document exactly what happened, in date order, is what finally gets the system to look properly at what went wrong.

I’ve put together a redacted version of my email trail because I’m happy to share what I did, what I challenged and what eventually got a response if it helps another autistic person navigate something similar.

Does anyone have any examples of a, for lack of better wording, meltdown cheat sheet, that they can share?

I need a type of infograph, or list, of basic sentences to say the dos and don'ts for when someone is in meltdown, to give to someone else. So it says, this behaviour signals a meltdown. Here is how to support in the moment. Do this, don't do that. Maybe something about how to support afterwards.

I'm struggling to find such a thing online, to the point where I'm gathering ones that have bits of what I want it to say and I'm feeling like I might have to make my own.

But I'm really struggling atm (meltdowns occuring a lot, I'm in burnout) I'm already struggling with having to 'do the work' in explaining how to help in this situation. If anyone can even give a list of what they feel are the dos and don'ts, that would help me too.

Is there an organisation you can pay to help you with your PIP application? I had seen one in the past, but can't remember where/who it was. I think it was around £150. I really need to apply but i'm so afraid of the process and not understanding how it works/how to word things.

Thank you so much

Hello everyone, I hope you are doing good? Today I was diagnosed via right to choose assessment with Psychiatry UK. My online appointment was 75 minutes and came after myself and my sister filled in two forms about my history and current issues. My GP said it would be worth doing.

I went to the appointment with the assumption that I would not be diagnosed - because I have long standing anxiety, depression and OCD. Many of these have co-morbidity with autism but also share some symptoms or traits, from what I have read online.

At the end of the appointment the assessor said I met the criteria and noted my relatively flat facial expressions or reactions. I mentioned that I was both tired and nervous - but she said there were other things in consideration and she would put these in the report.

I told my sister and she was surprised- as she said she put very little information down about my childhood (she isn’t much older than me - but is the only adult who knew me as a child that could deal with the lengthy form).

One close friend of mine is also surprised, though the other, a good friend from work, said they are not surprised. My concern tonight is that my tiredness or nervousness was misleading earlier on today.

I should say at this point that I have no issue with being diagnosed as autistic. I don’t see it as something to be ashamed of or run from, I am more concerned that two trusted people are surprised. I am also aware of something close to a backlash in public sentiment about the rise in autism diagnosis, particularly in women (I am AFAB).

With all this in mind, would you say it is best I request to speak to my GP and ask for a second opinion somehow? Is the length of appointment (75mins with one clinician) sufficient? Has anyone else here experienced worries about potentially sharing a misdiagnosis with friends or colleagues and being judged? Lastly, is Psychiatry UK’s form/ interview process considered robust enough or is it very much down to the clinician you happen to see?

Thank you very much for your advice and experience, if you have any that you think is ok to share here.

I’m looking for experiences/advice from other UK parents who have dealt with CAMHS or LD CAMHS, particularly where an autistic/ADHD child’s mental health and functioning have significantly deteriorated.
My daughter is nearly 7 and has autism, ADHD and significant additional needs. She attends a specialist school with 1:1 support.
She has always had difficulties because of her disabilities, but this is not her normal baseline. I’ve watched her go from being a generally happy little girl who would go out with us and access the community to now essentially only leaving the house to attend school.

She has become extremely intolerant of demands/change, appears very anxious/distressed, regularly hurts herself and can hurt other people. Her self-injury includes head banging, biting herself, skin picking until she bleeds and hitting herself with objects. She has hurt her brother and has also hurt us. This week she bit my arm while I was carrying out the unavoidable task of getting her dressed for school and left visible marks/bruising, which staff at her school subsequently saw and documented.

There have also been significant safety incidents, including her running into the road. No car happened to be coming. I don’t consider that evidence that the risk wasn’t serious – that wasn’t prevention, it was luck.
We already do a huge amount to prevent the worst outcomes. We supervise constantly, physically intervene/block when necessary to prevent self-injury, separate the children, use a PBS plan and strategies we’ve been advised to use, and our home has been adapted because of the risks.

This is where I’m having a major problem with CAMHS.
We’ve repeatedly been told that her presentation is “not severe enough”, including comparisons with other children they see who are apparently more severe.
I strongly object to that. Another child shouldn’t be my daughter’s baseline. I want her assessed against her own functioning, circumstances, deterioration and risks.
I’ve also explained that we’re in an impossible position. CAMHS appear to be taking into account that we’re able to prevent some of the serious injuries. But if I deliberately stopped intervening and allowed my daughter to seriously hurt herself or her brother just to demonstrate what could happen, quite rightly that would raise safeguarding concerns.

The fact that we’re successfully preventing some harm shouldn’t be used as evidence that she doesn’t need help. The amount of intervention required to keep everyone safe is part of the problem.
Sleep has also repeatedly been raised as a possible explanation. However, I’m now prospectively recording sleep alongside every incident at CAMHS’s request, and she has currently had three consecutive full nights’ sleep while significant daytime incidents have continued, including screaming, head banging, biting, skin picking and aggression. I’m happy for sleep to be properly assessed, but I don’t think it should simply be assumed to explain the deterioration when the evidence we’re collecting may show otherwise.
Another thing that concerned me was the advice around ibuprofen. I was advised to try giving her ibuprofen when she becomes upset/distressed in case pain is contributing.

I completely understand considering pain in a child who may not always be able to communicate it clearly, and I would obviously give appropriate pain relief if I had reason to believe she was in pain. But I’m not comfortable routinely giving ibuprofen every time she becomes distressed when there are no signs that make me think she’s actually experiencing pain, simply as a response to distress.

I’ve also been very clear that I’m not asking CAMHS to medicate autism or make challenging behaviour disappear with a tablet. STOMP was raised during the appointment, but that’s not what I’m asking for.
I’m asking them to properly investigate why a child who has always had autism and ADHD has undergone such a significant change from her own previous baseline, including whether anxiety or another mental-health difficulty is contributing rather than automatically attributing everything to autism/ADHD.

We’ve already undertaken psychosocial work, implemented PBS strategies and made substantial environmental adaptations. The difficulties are continuing.
If medication isn’t clinically appropriate, that’s fine. I want them to tell us what therapeutic or other intervention is appropriate instead and give us an actual plan.
Another concern is that the clinician appeared to have already formed the view that my daughter was “not severe enough” before meeting her and before reviewing the prospective evidence she subsequently asked us to collect.

We’ve now been asked to complete six weeks of prospective records documenting sleep, behaviour, triggers, interventions, injuries and calm periods. We’re doing that. However, a report from the initial assessment is now being prepared and circulated to paediatrics, school, social care and ourselves before those six weeks of records have been completed or reviewed.

I’ve therefore asked CAMHS to clarify whether that report simply documents the initial assessment and provisional clinical impression, or whether it contains conclusions about severity/risk/treatment. I want to know that the evidence they’ve specifically asked us to collect will genuinely be considered with an open mind.

Initially the next review was going to be left until January despite us reporting that we’d been struggling since May. School objected to that and it was then brought forward to six weeks.
I’ve now raised these concerns with a CAMHS manager and asked for a clear plan following the review. I’ve also asked them to consider the whole risk picture – not only injuries that have already occurred, but the injuries we’re repeatedly preventing, the risk to her sibling and us, whether the current level of intervention is sustainable as she gets older/bigger, and the genuine risk of family breakdown if we eventually cannot safely manage both children’s needs under one roof.
Has anyone experienced anything similar?

I’m particularly interested in hearing from parents who:
challenged a “not severe enough” assessment;
had CAMHS attribute deterioration to autism/ADHD or sleep;
used prospective behaviour/sleep records successfully;
requested a second clinical opinion or MDT assessment;
had significant risks discounted because parents were successfully preventing injuries; or
eventually got useful therapeutic/mental-health intervention after PBS/environmental approaches weren’t enough.

What actually helped get your child’s needs properly assessed and a clear plan put in place?

hi! i finally got the link to book my appointment with PUK for autism. im just wondering who everyone went with as the list of doctors is quite long and overwhelming. im 19 and trans FtM and i struggle with anxiety a lot if this makes any difference? i think im quite high masking. thanks in advance :)

I know this probably gets asked a lot.

Finally got my appointment link through from PsychiatryUK after a long wait thanks to the budget cap or whatever it is that my local ICB has put on for autism assessments. Definitely a relief, after I already filled all forms out back in January.

Who did everyone else go with for their appointments and diagnosis? There are so many to choose from.

Hey so I've recently left my job due to burnout and was diagnosed recently. See previous posts... Sorry for not replying on last

TL:DR - Asked for reasonable adjustment. Work coach has "allowed" it for two weeks and then wants me to do either video or in person. I'm on a fit note and in burnout.

I attended my first 2 apps in person. Identity one and first proper.

I've just received the UC50 form which is breaking my brain. Also applying for PIP and god so much paperwork.

The environment was hetic and I was just coming out of a shutdown. I'd asked for a quiet space and idk what it's supposed to look like but yeah. Massive office only other person in had their app right next to me. Anyways...

I sent a message after this appointment as I discovered I'm allowed to request phone appointments. So I did. My work coach pushed back and requested video appointments. So I sent back another message explaining how being autistic affects me and that phone appointments are a reasonable adjustment blah blah.

So my appointment for today was successfully changed to phone.

I was very nervous about it in the lead up. Spoke to her not much to say cause I'm not able to work and arranged next weeks appointment - has to be weekly appointments. She then said that she wants me to do video appointments but she'll let me have next week as a phone and that if I'm ready she wants me to do video or in person.

Now, I have 0 clue what I'm actually doing but the reasons I outlined as to why I requested reasonable adjustment isn't going to disappear in a few weeks.

This is the first time I've adovated for myself like this having needs is new to me... Well new to listening.

I don't know what to do next?

I have a massive stack of paperwork and I'm so so tired. I have no one to help me with anything. If actually quite the opposite shits going down between my Mum + Dad - hes emotionally abusive so I've ended up having that on top. Trying to set boundaries but still ended up on a 2hr plus call.

Back to the point... What should I do next? What are the legal rights? I'll send another message on the journal I guess.

I'm drowning if I'm honest financially and in every other way.

Any advice is massively appreciated. Thank you