Autism and Aspergers
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Autism and how to get diagnosed

juliaparry24juliaparry24 Member Posts: 30 Connected
Is it better to go to a gp to see if I have autistic tendencies or not?
I'm not sure were to start because I've never been tested for it before and I don't want to be judged by anyone if It turns out that I have got it

Replies

  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,924

    Scope community team

    Hello @juliaparry24.

    It's your choice as to whether you feel an assessment or diagnosis would benefit you. If you feel it's important for you, then your first step would be to speak with your GP.

    Autism.org.uk has some information on the benefits of getting a diagnosis and some information on the process which I have copied below. 

    Step 1: speak to your GP

    Book an appointment with your GP. Make sure your diagnosis is the only thing you are seeing your GP about. If you try to mention it during a consultation about another subject, your GP may not address it fully.

    Step 2: present your case

    Your GP needs a reason to refer you for diagnosis, so you will have to explain why you think you could be autistic, and how a diagnosis would benefit you. If you think you might want help with this, ask someone you know to come with you.

    EXPLAINING YOUR SITUATION

    You could say that you've been reading about autism, or that you've been in touch with The National Autistic Society. You could say that you think you experience some of the difficulties people on the autism spectrum can face, and you would like to seek a formal assessment to be sure. Try to give your GP some examples of difficulties you've had in adulthood and childhood with communication, social interaction, sensory difficulties, friendships or employment, and the need for routine, and how much you think these affect the different areas of your life.

    YOUR GP’S RESPONSIBILITIES

    Not all GPs will have an in-depth knowledge of autism, so it's important to explain things as clearly as you can. You could take along a copy of our guidance for GPs, and tell your GP about the relevant guidelines on autism recognition and referral that should guide their decision to make a referral.

    In England, your GP should be following NICE guideline 142 and be aware of the statutory guidance requiring a clear diagnosis pathway for adults.

    In Northern Ireland, your GP should be following NICE guideline 142 and be aware of the Northern Ireland Autism Strategy and Action Plan.

    In Wales, your GP should be following NICE guideline 142 and be aware of the Autistic Spectrum Disorder Strategic Action Plan.

    In Scotland, your GP should be following SIGN guideline 145 and be aware of the Scottish Strategy for Autism.

    Step 3: getting a referral

    If your GP agrees to refer you, we recommend that you tell them about local services which have experience of multidisciplinary diagnosis of autism in adults. Print out the details of diagnostic services in your area and take them with you.

    If it isn't possible to refer you to a multidisciplinary team, you could be referred to an individual professional, such as a psychiatrist or clinical psychologist. This professional should be experienced in diagnosing autism, as this will mean you are more likely to be accurately assessed, and will avoid having to go back to your GP to ask for a second referral.

    Be aware that it can sometimes be hard to find a service or professional with experience of diagnosing autism in adults.

    Once you have been referred, there is no more involvement from your GP.

    Senior Community Partner
    Scope

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  • juliaparry24juliaparry24 Member Posts: 30 Connected
    Thanks for the advice @Adrian_Scope, I will try my best I have a appointment with the doctor this week to talk about having a full disability assessment done, hopefully that will help me understand my situation more, I have already been statemented with learning disabilities, I just need to know if I have autistic tendencies or not and to get help for my anxiety and depression 
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,924

    Scope community team

    Best of luck @juliaparry24. Please let us know how you get on.
    Senior Community Partner
    Scope

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  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    I hope the appointment goes okay @juliaparry24. :)
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  • juliaparry24juliaparry24 Member Posts: 30 Connected
    I'm at the doctors now waiting to be seen, a little nervous tbh, thanks @Adrian_Scope and @Chloe_Scope I'll keep you both updated 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    I really hope it goes okay @juliaparry24! :)
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  • Sorry_SusanSorry_Susan Member Posts: 56 Courageous
    We obtained an assessment when our daughter was 14 and I am very relieved that we did. Before we did not want to 'label' her, but the 'label' is actually useful as people are more understanding of her eccentricities. She is autistic and not weird.
    Weird is bad, autistic is understandable.
  • juliaparry24juliaparry24 Member Posts: 30 Connected
    @Sorry_Susan I hope that your daughter was able to get the support that she needed, I am currently waiting for a letter to come through the post to get sent for a disability assessment witch I am looking forward to 
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,924

    Scope community team

    Thanks for sharing that @Sorry_Susan. I'm glad the diagnosis has helped your daughter. How old is she now?

    I hope you're not kept waiting too long @juliaparry24. :)
    Senior Community Partner
    Scope

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  • anistyanisty Member Posts: 171 Pioneering
    Good to hear @juliaparry24. My son is 21 now and was diagnosed at 13.

    It opened up a whole range of social opportunities for him as we have a great centre in our area for under 18s and another for adults over 18.

    There, he can be with others who are 'just like him' (his words)

    He feels happy and comfortable. He doesnt join in a lot of stuff. There is chess club, gardening, walking, pub visits. Cinema, bowling etc and he just does the cinema and hangs about the computer.

    There is employment and benefits advice, all especially for asd. And they have work experience link ins with local businesses.


    I hope you find something similar near you. My son was reluctant to go at first (he started off at the under 18 one) but he loved it from day one.

    Being with like minded people was the best thing ever for him. He is still at the stage where a funny voice or repeated phrase amuses and there are others that can laugh and make him laugh. 

    It is for anybody with a diagnosis from people quite able and in employment to others who need more support.

    Fantastic and i hope you get your diagnosis (if that is what you want of course) and it links you in with a whole new range of opportunities!

    Keep us posted
  • juliaparry24juliaparry24 Member Posts: 30 Connected
    Just for an update to let you all know that I've been refused for a disability assessment so it's back to the start again 😔 😢, seems like no matter what I do I can't get any extra support 
  • anistyanisty Member Posts: 171 Pioneering
    Oh no, im sorry to hear this @juliaparry24. Is it your gp that has refused and did he/she say why?

    You dont say what age you are but would a parent/partner go along with you to see another GP in the practice?

    Dont give up at this early stage. Im sure others will have better ideas but that is my immediate thought of what to do
  • Sorry_SusanSorry_Susan Member Posts: 56 Courageous
    Oh! @juliaparry24, so sorry to hear.
    It was an incredibly difficult process on our side to get an assessment on the NHS. We eventually went private and it was worth every last penny (about £800) that we paid (even if yo have private medical insurance it does not cover neuro-developmental disorders). 
    My daughter is now in a very good school specialising doing A-levels. The school only caters for prospective engineers and all the students (even the euro-typical ones) are like minded. The school took her on knowing she is autistic and yes, we had a few extra hoops to jump through, but it was worth it. 
    I think without the diagnosis we would still be floundering.
    Good luck!
  • anistyanisty Member Posts: 171 Pioneering
    edited March 2020
    Going private is an option @juliaparry24 but expensive! It would definitely worth it though if it got you the diagnosis you seek. It is worth bearing in mind that to get a diagnosis, you need to fit certain criteria.

    In 2013, the new DSM V manual was published. And new criteria for diagnosis. Check out the 'levels' here


    https://www.healthline.com/health/levels-of-autism


    Aspergers now technically is not recognised as a label but i think many professionals think it is a useful label to hang onto.


    Important to note i am only speaking as a parent. I am not in anyway qualified to say exactly what criteria they currently use to assign a diagnosis of autism.

    Maybe @SparkleSheffieldAutismAdvisors can come along and advise further.

    When i look at my son who is definitely functionally impaired by his autism (he was diagnosed pre 2013) I can only see him fitting level 1 and possibly some level 2. 

    I should think it is very difficult to look at the levels yourself and see if you fit. Self analysis isnt that easy for anybody really, but someone that knows you well could look at them perhaps .

    If you are still in education, could someone from the school or college go to the GP with you maybe?

    Take care and dont give up at this first hurdle. There will be another way round.


    Looking again, i think my son is mostly level 2 and some level 1. 


    I think (but remember i am not an expert at all) the autism needs to be causing a functional impairment to get a diagnosis. That means is is stopping you doing things that need to be done to function in day to day life.

    If you have some 'autistic traits' ( maybe prefer your own company, have some unusual interests etc) that might not be enough to actually qualify for a label if you can get about in life quite well but just dont like social gatherings and parties.


    As i say, im no expert. Im just worried you might go along the 800 pound route and come out no further forward!

    Trying to be helpful and not add to your stress. . . .








  • OverlyAnxiousOverlyAnxious Member Posts: 1,256 Disability Gamechanger
    I was also refused an ASD diagnosis referral, initially by the GP because I'm too old for it to be of any help apparently.  Eventually got the GP to agree to it but then the Access & Assessment team refused the referral on the grounds that I don't have enough medical evidence.  I've tried writing to them to explain that I have very little medical history at all due to a severe medical phobia & social problems but haven't heard anything back from them.  That was probably 6 months ago so I don't expect anything now.  

    I know there's no 'help' for ASD once you pass education age but that's not the point...  I've never had any improvement in anxiety and social issues and would be nice to know if I'm trying to fix something that is unfixable!
  • anistyanisty Member Posts: 171 Pioneering
    There is help @OverlyAnxious!

    This is the place my son goes and looks like they are UK wide so maybe something near you


    https://www.autisminitiatives.org/


    Just having a place to hang out with like minded people is tremendous for my son. It is a place where he fits in.

    They sorted out his supported employment and also his UC  claim. Its a brilliant place!
  • Sorry_SusanSorry_Susan Member Posts: 56 Courageous
    My 40 year old friend was diagnosed (privately) a few years ago. It was a massive relief to her. 
    She could not get it done on the NHS. 
  • IrishMancIrishManc Member Posts: 37 Courageous
    It’s interesting because the research I’ve done on this (for my own case) a few years before my redundancy in Sept 2019 appears to indicate that GP’s are very reluctant to refer an adult on the NHS for a diagnosis, even when the jobcentre requires you to do so for the UC claim, which I mentioned to my job coach here in Manchester - another complicating factor is that my GP’s first language is not English and where some cultures regard anything relating to mental health or bullying as being not relevant and also, my GP’s does not appear to fully understand certain aspects of Irish culture (as I happen to be an Irish gay man who was raised a Catholic in Rural Ireland) - it was only when a family friend back home in Ireland on one of my visits home after Christmas suggested to me that I might have Aspergers as she knows me from childhood - I’m worried that if I fail to obtain the referral in a timely manner from the GP as instructed by the jobcentre, that I could end up being sanctioned, as this is already affecting my jobsearch activity 
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