Unacceptable waiting times — Scope | Disability forum
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Unacceptable waiting times

Indigo191 Community member Posts: 4 Listener
edited September 2020 in Autism and neurodiversity
Hello Everyone, 

Over the past three years, I have been struggling with the waiting times for an adult autism assessment. I was put on the list in Manchester in October 2017 when I was a student and I felt completely let down by the trust who made me wait for three years without a word, in the meantime, I struggled with being a student and mental health issues. In March 2020 I had to leave Manchester because of the coronavirus pandemic and I was taken off the list because I could not be a part of two different NHS trusts. I felt angry and distraught that three years of my life was for nothing.

Today I had my initial assessment in Hartlepool yesterday. It went well but they said I would be on another waiting list for 2-3 years. So I will be 24-25 when I get it and I started when I was 19. I feel so drained of fighting it every step of the way. I have done everything. I have written to MP's, the heads of the NHS, started petitions, tried to create campaigns at university but nothing has made a dent. Every time I go the doctors to see if anything can be done to speed the process up because it is seriously affecting my mental health, they have just put my medication up higher and put me on NHS counselling which is another waiting list. That is like placing a piece of sellotape on a deflating tyre. It will keep it going but it still goes flat down the road. 

My friends and family have been asking me why it's so essential to me, I'm the same person with or without it and it shouldn't define you getting a diagnosis but for me, it's so important. There isn't a day in the past three years when I haven't thought about it. I want a diagnosis for acceptance of myself and learn how to understand myself without any doubt of who I am. My Aspergers is my biggest insecurity at the moment, it feels like an anchor that's holding me back in my daily life and I want to be something I'm proud. I want to be proud of that fact I could tell someone the low-cost airlines of Mexico and what aeroplanes they fly (mainly Airbus A320's if anyone wants to know), I want to be proud of telling people why a Vauxhall Corsa and an Opel Corsa is the same car without feeling like people find me weird and are bored. I want people to understand why I can't do certain things if it messes up my routine. I want people to understand when I go quiet because of my sensory issues, for example, smells when it comes to buses and hair salons. 

I want to be proud and not ashamed of myself every day 


  • poppy123456
    poppy123456 Community member Posts: 52,444 Disability Gamechanger
    HI and welcome,

    Waiting lists for ASD assessments are very long across most of the country, especially adult ones. My daughter was diagnosed when she was 17 and it was her college special needs department that finally referred her. They told me that she would miss the first part of the assessment because they wanted to do it quickly, before she reached 18, otherwise it could take a few years. She waited about 5 months for the process to start and then it took another 6-7 months for the diagnosis.

    I totally understand the need to get that diagnosis. I fought for 14 years for my daughter, i knew there was something not quite right with her and the older she got, the more noticable it became. She was indeed diagnosed with ASD and my thoughts for all those years were correct. It didn't change anything at all, she was still my daughter, still the same person she was before diagnosis but for me it was closure on something i fought so hard for. Proving to everyone that told me "it's all in my head"

    Having said all of that, you shouldn't be ashamed of those things because that's your interests.

    I don't have any advice for you regarding the waiting lists and i'm not even sure what can be done to decrease those times. I just wanted to welcome you to the community and say hello :)
    I would appreciate it if members wouldn't tag me please. I have all notifcations turned off and wouldn't want a member thinking i'm being rude by not replying.
    If i see a question that i know the answer to i will try my best to help.
  • OverlyAnxious
    OverlyAnxious Community member Posts: 2,561 Disability Gamechanger
    If you really want to bore people, you can tell them the latest model Vauxhall Corsa and Peugeot 208 are also essentially the same car since Peugeot bought GM...   :D  Only a select few people will be interested in this sort of thing though, I don't think you can control other peoples boredom!  I can give you plenty of car related info from spec lists to MPG figures to the huge list of cars that used the DV6 engine...but honestly no-one else would be in the least bit interested!  Equally, I'd be bored listening about someone's new puppy...or what they did at work...lol. 

    I've also been waiting ages for an ASD assessment referral and was put off by GP's several times as I was too old (mid 20s!) and it wouldn't make any difference apparently.  Persevered and did eventually get through to the assessment service, but they wouldn't allow me an assessment as my medical records didn't show any early signs and the GP wasn't interested in pushing it.  Have just given up for now as I know the waiting lists here are about 5 years for low-needs patients anyway.

    I think the only way you can speed up the process is to pay for a private assessment but I'm guessing that's not an option for you at the moment? 

    I don't really understand why the lists are so long.  Are there just not enough people specialising in this to carry out the assessments?  Is it a funding thing where the NHS will only pay for so many?  I could accept 6 months or even a year wait but for it to be several years and still growing, I just don't get it!
  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
    Hello @Indigo191 and welcome :) Hope you're well today.

    I'm very sorry to hear that you've had to fight for so long to get the diagnosis, it's a massive shame that it takes this long and can cause mental health issues. 

    Just remember though, diagnosis or not, you are you and your family and friends will love you for being yourself. you should enjoy your interests and be proud of them. Even if others aren't overly interested in the topic, your passion for your interests will make them interesting to others who would perhaps otherwise be indifferent.

    But I understand completely why you want to fight for your diagnosis and why it has caused you so much hurt. I can only pray for you that it happens as soon as possible.
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  • janer1967
    janer1967 Community member Posts: 21,964 Disability Gamechanger
    Hi @Indigo191 Welcome to the community glad you joined us here and I am sorry you are waiting so long though from other comments it does seem to be the norm

    I cant really offer any advice but just wanted to say Hi
  • Chloe_Scope
    Chloe_Scope Posts: 10,586 Disability Gamechanger
    Hi @Indigo191, how are you doing? :)


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