Feeling ignored — Scope | Disability forum
Find out how to let us know if you're concerned about another member's safety.

Feeling ignored

Harley_Quinn Member Posts: 27 Connected
Hello I would like to ask for advice. I was diagnosed with Autism Spectrum Disorder around a year and a half ago (at 24). I was more or less just given my diagnosis with a leaflet about what the diagnosis entails and sent on my way.  I have been feeling let down by medical/teaching staff as I feel they should have noticed earlier so I'd be offered support, which I feel doesn't seem to be offered - focusing mainly on children. As a result I struggle daily with anxiety and sensory problems which I don't know how to process. I went for a PIP assessment and got 2 points only - the man taking the assessment said I was fine even though I didn't look him in the eye, had earplugs in and used my stim fidget the whole time and when I left was very overwhelmed as he practically coaxed the answers he wanted by the way he worded the questions and didn't seem to want to acknowledge what I was saying. I feel like I'm getting no further forward - I hardly leave the house, can't find a job and feel like nobody will listen to me about how difficult things are, daily things that others do without thinking, just because I look like I'm coping like a typical person. But what they don't see is everything that rushes around in my head and how exhausted I am after a day out because of all the input, like I've been hit by a bus. 


  • dianapeek
    dianapeek Member Posts: 1 Listener
    I can understand that. I went undiagnosed until I was 50. Handed my diagnosis and patted on the head as if that fixed a lifetime of challenges. Sent on my way. Promptly collapsed just like this. There is no adequate post diagnosis support & help for adults. The older you are the less help exists.  

    What helps?
    - Join in on line groups which are just for autistic adults - there are a lot of good ones on Facebook particularly for autistic adults and women. Look for uk focused groups. Not those for parents of autistic children. You are not alone. There are thousands of adults getting a late diagnosis. We have very different support needs. Contrary to popular opinion autistics are happy to reach out to others in the same boat (or pull you into the boat if they see you are drowning nearby).

    - see if there is adult social services support available (you are entitled to an assessment of your needs by social services). The local council website will have a link. 

    - social services and citizens advice can help you with PIP appeals, employment etc and it’s worth appealing. Most initial rejections are overturned on appeal. 

    -parent yourself. Yes people let you down. It’s ok to feel that. It happened and it hurts like hell. Focus on self care. What would you like to do for yourself when you were a child? What did you need that you didn’t get? Can you offer it to you now? 

    - Get the professional help you need to cope with it. You are entitled to counselling but it’s often offered from a different bit of the nhs than where you get a diagnosis and they don’t signpost you to it . The time to talk schemes in my area are open to self referrals for counselling so ask your GP practice to signpost you to local nhs counselling services, they walked me through all the post diagnosis emotions, better a solution than walking into depression. Talking about it helps. Compassion based therapy /emotional therapy works wonders. Cbt only helps after you have explored the emotions. 

  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,798 Disability Gamechanger
    I'm so sorry to hear about your experiences, @Harley_Quinn. My own condition is very different to yours but I can definitely relate to being given a leaflet and sent on your way when you still have so many questions. 

    I'm really glad to see you've had some brilliant advice from @dianapeek, and I hope our advisor @Jack_W will be in touch soon. How are things at the moment?

    With regard to PIP, if you decide to appeal the decision, we have some members who may be able to offer guidance in our PIP/DLA discussions. You may also be interested in Scope's Support to Work scheme!

    Support to Work is an online and telephone support programme for disabled people in England and Wales who are applying for jobs.


    Support to Work is open to disabled people who:
    • are 16 years or over
    • are looking for a paid job
    • have internet, email and telephone or Skype access
    • live in England or Wales
  • Aura
    Aura Member Posts: 43 Courageous
    Why is PIP refused so much?  I find it shocking that when People apply for PIP, it always comes back in the negative.

    I have found problems getting help with my Aspbergers, it all seems geared towards parents of autistic children, remember those children grow up, and in turn will also find it hard to get help.
    All women are equal.  Deeds, not words.
  • AngelaBallerina13
    AngelaBallerina13 Member Posts: 2 Listener
    Out of IInterest now did you go aabout getting a diagnosis for yourself as an adult? As I know I have always had Sensory issues as a child, however reading about my daughter's diagnosis, has made me more aware that I have sensory processing difficulties, similar to hers and I'm sure I may have Autistic Traits as well as Ocd, but don't know how to gtet assessed, or how long it takes? Could anyone point me in the right direction please?
  • Aura
    Aura Member Posts: 43 Courageous
    I was tested by a DR
    All women are equal.  Deeds, not words.
  • Adrian_Scope
    Adrian_Scope Posts: 8,572

    Scope community team

    Hi @AngelaBallerina13, the National Autistic Society has some useful information about seeking a diagnosis as an adult. They advise that you first approach your GP about the diagnosis, but if you're in contact with other health professionals, they might be able to help you with the referral process.
    Community Manager

    Tell us how to make the community better for you. Complete our feedback form.
  • michelleR
    michelleR Member Posts: 12 Connected
    Sorry to hear all of the problems you are having but when my son was diagnosed at 5 it wasn’t easy either 3 years it took me to get him diagnosed I kept getting told he was immature for his age etc etc, I went to the Dr and refused to move from the room until my son was referred 2 weeks later he was diagnosed, he had fantastic help until 18 then discharged and given no further help cos obviously Asperger and ADHD miraculously stops when you become an Adult ? as for PIP just keep appearing my son was on DLA and then when we went  to go on PIP he refused to go to the meeting got aggressive self harmed and smashed his room up I turned up and told them this they then said they couldn’t send someone round as he was aggressive, 2 years after appealing a nurse rang I spoke to her over the phone and she awarded him PIP, just don’t give up 
  • freckles
    freckles Member Posts: 258 Pioneering
    I was diagnosed with autism  in oct 2017 i had a 2hour assesement with my phychatrist who diagnosed me it was the same given a big booklet then sent on my way i was struggling with day to day things like still hoarding things car,nt interact with people never make eye contact fussy about certain foods etc so i rang the phychatrist up to make an appointment when i got to see him he said theres not a lot i can do for you then he mentioned intergrated autism services and a nice bloke came to my house and did an assesement he also written a statement for my pip tribunal he has now refered me to adult social services but as yet they have,nt been in touch the from I.A.S. rang me yesterday to see if i had heard anything i said no and he was insistant that he was going to chase it up i was 48 when i was diagnosed 


Complete our feedback form and tell us how we can make the community better.