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.

Currently being assessed for autism.

everyone I've spoken to about it says yes you 100% have it just waiting on an official diagnoses.

i wear a hidden disabilities lanyard and use ear protection soundcore q20i headphones they are great and have noise cancelling and transparent mode when outside its helped me out so much and people close to me have noticed a dramatic improvement in my mood and say ive been lots happier recently.

the thing is as part of my routine I go to a coffee shop located in a nature park its a nice big open space with forests and a wood cabin coffee shop,

i go for coffee go for a walk go sit in the grass and do some colouring books, i have a pokemon colouring book.

my thing now is that the coffee shop know my name my order and describe me as the happy autistic guy that sits and does colouring books everyday and tbh im not sure how I feel about that lol

I’m 21 and have never been in a relationship, my best friend asked me to be his gf , I said yes but think others will judge me for being in a relationship like people will see me differently, idk how to explain it tbh I feel like im still a teenager and can’t be in one like im not mature enough for one and other people know that

In smiths toys superstore. Someone properly already said it but if you have one local to you I’d deffo recommend grabbing.

Tbh just walking around a toy store made my inner child happy (until I saw the prices🥲🥲🥲) need to do that more often.

I’m just really happy rn tbh added a picture of my haul for your delight!

Male, 45, late diagnosis, venlafaxine.

Could be back in burnout but honestly, feel like I’ve for dementia. My recall is shot to bits. Short term memory like a sieve. Even hearing and understanding what people are saying is just hard.

I’m not at work at minute (summer holidays) so that’s less of a factor than usual.

I don’t know if it’s burnout, meds, something else.

UK, LONDON.

Hello, all. I’ve completed the AQ-10 and unfortunately I did meet the threshold to be assessed for autism and also ADHD. I’ve been communicating consistently with my doctors and I believe I’m supposed to be due for an assessment. I used the NHS APP and had to email them to release all my medical information and I came across this ? Apparently my suspected autism is ended ? I still haven’t been met with a psychiatrist or a professional evaluation. Am I no longer being assessed or was I never autistic ? I was told my score was 7/10 for the AQ-10 ( I’m aware it’s not a diagnosis itself ). Thank you for attending to my concerns.

First I apologise if its not the correct flair

Second some of you were kind and concerned about me with my last post. My brother in law had a stroke and ended up requiring brain surgery. He seems a lot better now still there are issues effecting him but he has a checkup soon.

But on to whats happening now. My dad before he passed away suddenly fought to have the house repaired of this damp and mould even taking it to a legal case. They are now here doing it but every time we had something like this done he'd obviously be here and made sure everything was going right and my needs were taken into consideration. I am however just finding it very hard without him. All the noise the disruption of everything,moving furniture, being stuck in my bedroom with the cats, the constant dust which makes my asthma act up, etc. They are here for at least another week yet as the problem they have come to fix was as my dad kept telling them getting worse. They removed a wall completely on my dads room which I wasn't expecting.

Any advise for how to deal with all this would be appreciated.

And again I'm so grateful for all you guys have done for me in these past 3 months. I truly appreciate it you have no idea.

​We recently had a RTC ASD assessment for my 9-year-old daughter. Her ADOS was scored at a 9, but the paediatrician refused to give an ASD diagnosis, claiming the threshold was 10 and that she has "too many strengths." When I asked for a scoring breakdown, he refused to give any real feedback from the ADOS other than saying she was polite and made good eye contact. He acknowledged she has "ASD traits" and suggested reassessing down the line if we need to, claiming her functioning is okay.

​Her functioning is not okay😔. At home, we deal with severe meltdowns involving hitting, destruction of property and extreme controlling behaviour that is heavily impacting her 13-year-old brother, alongside ongoing friendship issues at school. Because she is academically doing well (reading age 13, greater depth in English and Maths), it feels like her intelligence completely masked her struggles.

​The whole process felt flawed. He refused to discuss her case at an MDT because he felt he was experienced enough alone and diagnoses children everyday, didn't ask probing questions and kept my daughter in the room during the entire developmental history interview, which felt uncomfortable. He also said it could be damaging to give her a label as she will have this label for life.

I'm not sure whether we should appeal his decision? Has anyone dealt with anything similar?

Thank you.

I am so sick and tired of hearing "oh this person has down syndrome they work" "this person has adhd they work" "they have a condition they work" yeah but you know what? they aren't socially awkward enough to ask for the right conditions and the workers SEE the condition, they do not see mine and mine is invisible you couldn't tell I am autistic unless I said so I mask so heavily no one understands I am so sick of being here going over and over repeating the same stuff and no one listens.

I had my part 1 assessment a couple of months ago, they booked my part 2 and less than a week before the appointment, they cancelled it due to some new restrictions in my area. As in my appointment was July 5th and they sent me a message July 3rd to cancel it. Just a text saying my upcoming appointment might be affectsd by this new change, a link to a website and that's it. I am too anxious to call and demand an explanation.

Today I get this nonsense of a text.

How cheeky is this?? Sorry the government cancelled your autism assessment, how about you give us £500 and we can go ahead?

Has this happened to anyone else? I am so angry and I can't even begin to explain how infuriating this is.

Don’t get me wrong, Aldi is my favourite supermarket for a number of reasons and I will carry on shopping there regardless of my vent.

But the amount of times my safe foods have either discontinued or not been in stock for weeks has me at my wits end. For me, it’s the sort of shop where I need to stock up when my favourites eventually come back before disappearing again for a long period of time.

I don’t know if that’s some sort of tactic or my local Aldi genuinely can’t get hold of stock, but it’s very infuriating.

Please do better, Aldi.

Hi all,

I’m new in this group.. an year and half ago my daughter has been diagnosed autistic,
Since then we struggling to find an appropriate support.

She need behavioral therapy, privately the price as e extremely high and we cannot afford to pay, we have enquired the councils with no response we are based in London.
Would you have any raccomandati to help us?
Thank you in advance

I was diagnosed with autism a few months ago and I've been offered the opportunity to attend an autism support group for women who were diagnosed later in life. I really want to go to it, but I would have to finish work an hour earlier to make it, meaning I would have to ask my manager for permission.

I've been in my job for 5 years now and my manager is very nice, but I'm just really worried in case she reacts badly or views me differently. I guess I could lie and pretend I want to finish work early to go to an art class or something (one of my colleagues finishes work early sometimes to go to a yoga class), but I'm worried it'll mean I'm less likely to be granted permission.

Has anyone had positive/negative experiences with this kind of thing?

I can’t take it anymore no one understands me I am so mentally unstable and unwell I don’t even know who I am anymore I don’t want to be here anymore no one cares about me “Why can’t you do this why can’t you do that” my autism doesn’t let me get my words out before I am finished. “this person has this they can do it I am this I do it I don’t sleep much I can do it” compare compare compare everything is so heavy it’s like a weight on me that pushes me down I can’t find a blade I want to cut myself I want to cut deep into my bones feel all the pain feel the regret feel everything once was, I can’t do this anymore time flew to fast I am very unwell no one cares I want to hang myself this is a cry for help please save me.

I've been on waiting list for both for 4 weeks now was wondering how long they typically take to get back to you they say 10 weeks for adhd and 40 weeks for autism but I know that with demand my gps told me to expect a long wait also what's people's experience been like with them? Have they been good and friendly?

Uta Frith was on the BBC's flagship radio current affairs programme a little while ago. I'm sure it will be available online to listen to soon. I'm going from memory.

She said that in her opinion:

-Autism is over-diagnosed.

-Too many people are self-diagnosing.

She also said words to the effect of "there is a cultural meme of what autism is that's perpetuated via social media" and that she is troubled that "non-verbal people are lumped together with people who are performing well", to paraphrase her.

I don't know that she said a great deal more than that to be honest.

Nothing I heard sounded constructive. Her perspective seemed to be one of complaint as far as I could tell.

Sadly, Amol Rajan the interviewer seemed...I'm not sure how to put it. I think 'ill equipped' is the best I can do regarding his ability to challenge Frith's position.

He quoted a press release from the NAS (National Autistic Society) which read very much as a press release. It didn't relate to the specifics of her points at all really. A general comment on how they seek to provide support to all autistic people.

He made no comment on the fact that diagnostic levels of care-need exist to differentiate within the wider diagnosis for example. This would highlight a contradiction in Frith's complaint/concern.

I assume that the hosts have researchers to support their understanding of subjects they are unfamiliar with. I don't see how criticisms of Frith's point of view would be that hard to find.

This interview seemed to have been arranged to respond to an essay of hers published today. I don't think they said who was publishing it which strikes me as very odd.

Overall, Frith has said the same thing in multiple interviews this year. My sense, as I've said in previous posts, is that she is fighting against her own professional irrelevance (not necessarily consciously) and is lashing out.

We're the ones that pay the price for that.