I just want a diagnosis

I have now been trying for close to 2 years to get a diagnosis of being on the spectrum. I spoke to a Dr for referral over the phone and was declined the assessment process for lack of evidence. I wasn’t surprised since the call with the Dr lasted about 3 minutes. I followed this up with my GP and he tried to palm me off with recommending speaking to a psychologist about my anxiety issues because he “doubted it was Autism because you have very good eye contact”. Even those he was condescending I pushed for a referral and got one. Eventually the Adult Autism Team got in contact to fill out a pre screening assessment (which I don’t feel was very in depth) and I have now been declined to progress any further despite me having a plethora of issues. I’m really starting to feel extremely low and frustrated I’m not being heard. It’s a lot to deal with right now as I’ve just lost my father on Christmas Eve. Is there anywhere I can appeal their decision? Or is there anyone I can turn to to try get a diagnosis because I really struggle work wise and holding down a job and for the last few years have became a full time parent/houseperson instead as my partner understands my struggles with working. 

I have 3 siblings who are all diagnosed with ASD. And I myself have been diagnosed with Dyslexia and Dyspraxia at age 19. I am now 30 and struggling more internally than I ever have. My 7yo daughter has traits of possible ASD and ADHD. And my 3yo daughter is ongoing for the ASD assessment just now. 

  • It is certainly quicker and less stressful. Plus, as you are paying, you do not feel that you are asking for favours and are jumping though hoops all the time.

  • Thank you for all your replies. It would seem the easiest route would be a private assessment. I just can’t be bothered arguing and appealing decisions to be just heard. I’d probably be quicker saving my disability money and paying for private in a few months time. 

  • lol ive been waiting like 4 years now and it maybe 4 more ontop of this

  • We have the same G.P!!

    In my case the path to diagnosis was much swifter than many report. 

    1. A freind suggested that I got to aspergerstestsite.com and test myself.

    2. I scored high enough that it warranted fruther investigation so I browsed the internet a bit, obtained some evidence to support the idea that I might have been carrying undiagnosed autsm for over a half century and went to see my Doctor with the same result that you got; "No, you have not got autism you interact too well". (over a half centruy of masking will do that!) Finally he agreed to do teh test and set me up an appointment for that. 

    3. I scored high enough to win a "referral". 

    4. I asked what was involved, and what timescale, and to be honest did not liek what I heard so I followed up wth a few phonecalls which was a good thing as the surgery seemed to think that several weeks was a fair tiemscale to even send the referral letter...   

    5. Since as always "it's thd squeaky wheel that gets the grease", and I know how to squeak loudly when I need to, I was in and out within three months...

    Your life is effectively "on hold" whilst waiting for that diagnosis, and I was NOT going to be put on hold for 2 years like some poor people allow to happen to them.. 

  • how can they determine eye contact though, as i may appear to be giving eye contact but instead be looking at their lips or something lol

  • Shockingly, eye contact is taken as a yes/no indicator of autistic status by far too many misinformed and, yes, stupid clinicians.

    I think private assessments can be around £900, mine was.

  • My partner is going through the same thing.

    She asked for a diagnosis 10 years ago. Told she was too old. She was 40.

    Then asked again before covid. Waited 4 years to see a psychiatrist. Denied a diagnosis because she made eye contact.

    Now the government are blocking referrals because of some bureaucratic crap.

    Private diagnosis costs over £2000.

    So. Up the creek without the paddle.

    System is fooked.

  • i didnt shout its all bullshit i pointed out the flaws and you gatekeeped and protected them and YOU said everything i said was bullshit... so you said its all bullshit.... while defending and propagandising for them

    burying the truth shall never allow you to fix it. you will kill the nhs. if you truly care you wouldnt do that. i care, thats why im this upset about it and concerned because i want this *** to be fixed asap before i need any health care because if its still like this when i need it im going to be absolutely fuming.

    and its kinda annoying that theres people like you whod virtue signal for the nhs and claim to be for it and for more funding, then you bury all the bad stuff that needs to come to light as if protecting their image... but we need to see this bad stuff to fix it, you understand? ... if no one sees and you bury it, it never gets fixed, and your virtue signalling just becomes offensive and again another reason i hate people who virtue signal as its all fakery and lies and without real commitment and care

  • Haha, it took you so little time to make it all personal, impressive. 

    I never write NHS is perfect. Quite the opposite, wrote a couple of times, that it has issues. That's a constructive way of improving things.

    Shouting "it's all bullshit" - is not, it does not lead to improvements of any kind.

    This conversation is pointless, let's stop.

  • its not about blaming the nhs... its about pointing out what needs to improve and whats a issue... if you gatekeep and defend the nhs when people point this out then YOU are the problem with this country, YOU are destroying the nhs and preventing it from improving.,,..

  • its based on my local hospital near me and the state thats in. its across the road from where i live and everyone is saying the same things.... the story of someone being unable to breathe and being left in a coridoor waiting gasping for air needing oxygen but being told they are not allowed to give them oxygen yet as they havent seen them, thats a real story from that hospital... someone also died from a hernia... a hernia... no one dies from hernias in this day and age, but they refused to see them and took so long a guy died of a basic hernia.

    its a complete disaster and i have absolutely no faith in this system from the state of that place. i seriously hope they sort that before i get to old age because trust me, in that hospital you will suffer really badly and end up dying while people ignore you.

  • +1 on this.

    I had an accident, had a bad fall and hit the head. I've spent around 8 hours in A&E this night, not a big fan of that indeed. But they triaged me within minutes, sent to brain CT straight away, and only after they've seen there's nothing urgent with me - put me to the queue. I can't complain, I could wait indeed, at least I know I was in safe hands.

    So quit blaming NHS, it's a great service. Has issues, overloaded like hell, but it works.

  • That seems overly pessimistic describing NHS this way. Not sure where it comes from, probably you've seen one unfortunate case and extrapolated it. I've been to A&E few times (including for my own stupidity), spent probably 30 hours total, seen many people going through. Initial triage is always swift, people with severe urgent conditions gets processed impressively fast.

    For non-urgent conditions, it works OKish, and I think it's getting better. So stop the ungrounded accusations please.

    Again, on the topic of ASD assessment - mine took a year with NHS, all free. In the USA, it might be quick-ish if your insurance covers it, but it almost never does, and then it costs $1000+. And that's for people wo normally struggle to make money.

  • Every year many Americans are bankrupted by medical bills. My wife had an accident a few weeks ago, yes we had to wait about 5 hours in A&E, but she was seen by a consultant, examined, had 4 X-rays and an ECG, confirmation that she had broken a bone in her hand, was given a wrist brace and had her fingers taped together, all for free. An ER visit, not including treatment, in the US would cost between $1,500 and $3,000 without insurance, and up to $500 with insurance. Personally I would rather wait 5 hours and not pay exorbitant sums.

  • If I were you I would ask for a written report from the 'Adult Autism Team'. Go through it and mark all things that they got wrong or missed about your traits and experiences. Then send it back to them and ask for a re-evaluation. As autism has a very important genetic component I do not understand how having many of your close relatives already diagnosed was not very highly influential on their decision. Another thing you could do is find the diagnostic criteria for autism in the diagnostic manuals ICD-10 and DSM-5 online. Go through all of the subsections and fit your own traits and history into those required. Write up a document and send it to the autism team and your GP and ask for a re-evaluation.

  • in america people get seen to right away and their emergency care is second to none... no one gets left, everyone gets seen to. its faster and more efficient than our health care and thats a absolute fact.

    just that yes, its also a fact its very expensive and you get put into debt when you wake up lol but you are never left.... and your debt can infact be written off and most people dont actually pay... most people have insurance which covers it, they are the only examples of people paying, other people that didnt have insurance are actually covered by medicaid anyway which functions like a...national insurance.... insurance by default for people with no insurance and no means to pay...

    then there was obama care which apparently speaking to my american friends was a disaster as it made everyones health insurance premiums spike massively. so they was paying alot due to obama care. which the media wont tell anyone because it would harm their party and people of choice...

    meanwhile in the uk... yes, your left to die... your left neglected for hours.... you need oxygen and they wont give it to you, you are lefty dying gasping for air in a coridoor and they are not allowed to help you or give you oxygen for days. thats a horror... thats pure horror what the nhs is currently... this is by far worse than the fake horror stories of america that we all claim they get left for dead on the street because they have no money, that doesnt happen in ameirca.... that happens in the uk but instead of due to no money its due to the nhs not functioning.

  • The NHS is very slow unfortunately. I've read time and time again how a lot of people get forgotten and the wait times can be three to five years or longer for people. Private is definitely the way to go, if you can afford it.
    I went with the Lorna Wing Centre and the service they provided was just amazing. They were very professional, supportive and kind, always patient and made the whole process feel so much better and easier to cope with.

    If you can get with them then you definitely wouldn't regret it. I have no regrets with them at all and highly recommend them to everyone who's interested.

    Hopefully if you can get diagnosed it will bring you the self knowledge and belonging feelings it's brought many others.

  • The US system is great if you are rich, appalling if you are poor, or even have a reasonable income. People decline to have ambulances called after having major accidents, because of the cost. It is also very inefficient, on a cost basis, drugs and procedures cost much, much more than the same does in this country. The NHS might pay £400 for a treatment, scan, or drug, in the US it could cost between twice and four times as much.

  • Try a different GP, don't give up. I got my assessment referral fro mGp At Hand - online GP, maybe you can switch to them.

    At the same time, you seem like you are fairly confident you have the diagnosis. Ask yourself, why do you need an official paper? There's a good chance it would be enough for you to simply accept it, and see what you can learn about yourself from the new framework. I went through this, and when I got an official diagnosis a year after accepting and internalising it all - the paper made basically zero difference to my life.

  • private is always the way to go when you want something done and done fast.... nhs are slow, they drag their feet, they dont wanna do their job, and when they do it they do it reluctantly and take 20 years.... private you get seen to right away and sorted right away for anything. so private is your best bet on this one.

    which then also opens up another point that americas private system is and always was better than our nhs lol