Research: Support for Autistic Adults in the UK

We are running a new survey to assess support available for autistic adults, and invite answers from all autistic adults, whether self or formally diagnosed, who live in the UK. Please don’t complete this survey if you do not live in the UK.

The survey is anonymous, and we don’t ask for personal information such as your age or gender.

This is the link: Autism & Support – a survey to assess the need for autism-specific support-services in the UK

If you would like to be notifified about future research, or receive copies of our reports, please join up to our “Research” newsletter, in the sidebar to the right.

  •  
  •  
  •  

6 Responses to Research: Support for Autistic Adults in the UK

  1. #Actually Autistic Katrine Basso says:

    I am an autistic adult of 56 years of age who only got diagnosed with autism on the 13th November 2014. He are the issues that I have faced:

    A letter confirming my NHS autism diagnosis was not sent to my GP.
    It took 3 months to get the summary of my diagnosis sent to me
    It took another year to get my autism diagnosis report
    If I did not get support from advocacy organisations and individuals I would not have got my summary of my autism diagnosis or my autism diagnosis report.
    There were several errors in my autism diagnosis report.
    It took three years for my autism diagnosis to be added to my records.
    I was refused post autism diagnosis support because of my age.
    Nothing has improved in the way GP’s and reception staff in the way they approach me.
    I still have to wait for an hour in the waiting room to see my GP.
    It takes over a month for an appointment to see a GP or nurse.
    Pharmacy staff have not been made aware of my autism diagnosis.
    When I have blood tests or have out patient’s clinic’s my GP does not tell the hospital or clinic that I am autistic.
    Even when I am wearing clothing saying that I am autistic it gets ignored by GP and hospital receptionists as well other medical staff as well as Pharmacy staff.
    Waiting times for outpatients hospital appointments are still as long as before.There are no special needs dentists for special needs adults as they only cater for special needs children.
    I asked support from the medical professional to help me explain to my oldest sister my diagnosis which they said that they would do but did not.
    It took me over a year to reveal my autism diagnosis to my oldest sister and she still has not accepted it as she criticizes my autistic behaviour (I do not mask even though I am female)Mental health understanding is none existent in Thurrock.
    I went to on a Cognitive Behaviour Therapy course which was not at all helpful (it worsened my mental health) as even though I revealed that I have been diagnosed and asked if he has had any training or experience working with autistic adults and he said no.
    He then revealed the reason why was because it was not worth it and that I was the only one (what about those with undiagnosed autism and those with don’t think about revealing their diagnosis or waiting to get an autism diagnosis or go through are still go through an autism assessment and have not yet been formerly diagnosed with autism) and that that he was asking me to speak to shop staff about my autism (which I am unable to do) and greatly underestimates the difficulties that I have.There are no autism specific support in Thurrock and the only NAS group in Thurrock is for parent’s and their school aged children.
    I have no living parents and only have two older sisters who live near by, one of them has a moderate to severe learning disability with cerebral palsy who lives in supported living accommodation (who has undiagnosed autism).
    I live on my own in council property.
    I have undiagnosed mental health disorders as the way that the mental health GP assesses people with a set of questions does not take in account of my autism and my difficulty in answering the depression verbal questionnaire as I am unable to identify my emotional difficulties and express myself clearly.
    I left school with no educational qualifications as I was not put forward for exams.I was taken out of school for three years at the age of 12 and 1/2.I have a very practically non existent employment history as I have had only 4 paid jobs that never lasted more than two weeks.I do not have my own transport.
    I am unable to use public transport due to mobility difficulties, chronic pain and fatigue as well as severe sensory overload.I have fibromyalgia, medication for undiagnosed mental health disorders and medication for epilepsy.
    I have spent most of my life attend to the Job-club and attending various government run employment training and work experience schemes which were no help to me due to my undiagnosed autism.I have paid for an on-line dyslexia assessment which shows that I have considerable difficulties.I feel as an autistic older adult I have been forgotten about.
    The NAS support is geared to children, adolescents and young adults as well as spouses but nothing for older adults.
    In the 1960’s when my mother was a state registered nurse who had experience working in children’s wards and various hospitals, none of her medical books have had any reference to autism, I know as I read all the medical books that she had.
    The first time I heard about autism was in the 90’s.

  2. Jacqui Nicol says:

    So glad I found this site. Is there a sharing experiences page, or could there be? Or where advice can be asked for?
    Contact with other aspies?

    • Leigh Forbes says:

      Hi Jacqui,
      I don’t have a general experiences page (though I welcome diagnosis stories), but check out the “Links” page (under the “Resources” tab above) – I’ve added a couple of links to Facebook groups I know of, and invited folk to leave any other recommended links in the comments.
      —Leigh

  3. Rebecca says:

    Do you have folks you work with in the US that you could refer me to?

  4. Tracey farrow says:

    I have just been given a diagnosis of Asperger,s at 50 a relief to realise why I think and feel different.

  5. found it!…so aspie of me not to see it.

Leave a Reply to Jacqui Nicol Cancel reply

Your email address will not be published. Required fields are marked *