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GP Referral Anxiety

GiselleGiselle Posts: 3Member Listener
edited September 14 in Ask an ASD advisor
Hi Violet,
I don't really know where to start because I'm new to all this, but here goes. I've suspected I may be on the autistic spectrum for some time. Having recently completed 3 different online autism tests, all 3 came back with the possibility of me being borderline/high functioning Asperger's, (1 said with overlaps of minor/borderline ADHD). I now think I should go to my GP for a referral, but I dread and feel anxious about talking about my experiences through my life, as sometimes going into depth about emotional issues can make me feel very stressed and exhausted. Do you have any tips on how to make a visit to the GP easier for me? Thank you - Giselle.

Replies

  • steve51steve51 Posts: 1,596Member, Community champion Chatterbox
    Hi @Giselle

    Welcome to our website and online community ???

    Having read your post I would be very happy to see you if I was a GP.

    You have done a lot off the hard work.

    I have been in your shoes many a time over the past few years.

    On presenting my info at my appointments and having reading it over & over beforehand.

    I was able to discuss things on there level giving me the confidence in knowing "what I had & what I needed"

    So I whould say that you are best placed in getting things sorted so you should "grab the bull by the horns" & go for it.
  • Sam_ScopeSam_Scope Posts: 3,352Administrator Scope community team
    edited September 12
    Hi @Giselle

    Do you have anyone you trust who could go to the GP with you?  Perhaps writing down some notes of how you feel would help, you can also often request a double appointment with a GP so you arent rushing.

    As hard as it is to make that first step, it is a positive one.

    There is lots of information here about ASD diagnosis that may help, this is what the NAS say:

    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 diagnosis 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.

    WHERE WILL I BE REFERRED TO?

    You are most likely to be referred to a diagnostic service (such as a clinic or assessment centre) in your local Clinical Commissioning Group area (in England), your Health Board area (in Scotland), your Local Health Board area (in Wales), or your Health and Social Care Trust area (in Northern Ireland). You can be referred to a service outside your area, but as this costs more, your local NHS commissioning body might question why you need to go there, or whether you really need a diagnosis.

    Private diagnosis is always an option, if you can pay for one, but you may occasionally find that local service providers (for example, social services) will not accept private diagnoses and will insist upon you having an NHS diagnosis, too.

    WHAT IF MY GP DOES NOT REFER ME?

    If your GP decides not to refer you for a diagnosis, ask for the reason why. If you don't feel comfortable discussing their decision then and there, you can ask for a second appointment to talk it through. You could ask to see another GP at the surgery.

    If you want to complain about the referral or the diagnostic service you received, you can make a complaint.

    Step 4: the diagnostic assessment

    Most adults see a psychiatrist, clinical psychologist or multi-disciplinary team for their diagnosis. Waiting times vary. You can take someone with you when you go for a diagnosis if you like.

    The team or professional might ask you to bring an ‘informant’ with you – someone who knew you as a child, such as one of your parents or an older sibling. This is because they may be able to give important information about your childhood.

    A diagnosis is not a medical examination. You don't need to be examined physically and shouldn't be asked for any samples, such as blood.

    HOW WILL THEY DETERMINE THAT I AM AUTISTIC?

    The characteristics of autism vary from one person to another, but in order for a diagnosis to be made, a person will usually be assessed as having had persistent difficulties with social communication and social interaction and restricted and repetitive patterns of behaviours, activities or interests (this includes sensory behaviour), since early childhood, to the extent that these 'limit and impair everyday functioning'.

    There are several 'diagnostic tools' available, and diagnosticians aren't obliged to use a specific tool. The tool is likely to involve a series of questions about your developmental history from when you were a young child (for example, about language, play and cognition).

    WHEN WILL THEY TELL ME THE RESULT?

    The diagnostician will tell you whether or not they think you are autistic. They might do this on the day of the assessment, by phone on a later date, or in a written report that they send to you in the post.

    The report may say that you present a particular autism profile, such as an Asperger syndrome or demand avoidant profile. Diagnostic reports can be difficult to read and understand in places. You can call the diagnostician to talk through any parts of the report that you find unclear.

    Find out more about autism profiles, and diagnostic criteria, tools, and manuals.

    Step 5: coming to terms with the results

    IF YOU ARE TOLD YOU ARE NOT AUTISTIC

    Sometimes people are told they aren't autistic, and sometimes they may be given a diagnosis they don't agree with.

    You can seek a second opinion, which either means going back to your GP to explain that you aren't happy with your diagnosis and ask them to refer you elsewhere, or paying for a private assessment.

    If you go for a second assessment, remember that it may reach the same conclusion as your first.

    IF YOU GET AN AUTISM DIAGNOSIS

    If you are diagnosed as autistic, you may have a lot of questions. You might be wondering how you can find out more about your condition, meet other autistic people, or access services and support.

    Post-diagnostic support is important. Some diagnostic teams and professionals offer follow-up services after diagnosis and might be able to answer your questions and point you towards support services. However, not all do this.

    Support does not automatically follow diagnosis, but having a formal diagnosis does mean that you are more likely to be able to access services and claim any benefits you are entitled to. Not everyone feels they need further support – for some people, simply getting a diagnosis seems to be enough.


    Best of luck, let us know how you get on
  • GiselleGiselle Posts: 3Member Listener
    Thanku for the welcome @steve51
    and the advice. I agree that I need to grab the bull by the horns, definitely. I wish I could just press a button and the GP would automatically understand lol, instead of having the frustration of going into detail & making sure I'm explaining myself correctly. But, I shall do it and get it over with. Thank you! :)
  • GiselleGiselle Posts: 3Member Listener
    @Sam_Scope thank you for your reply, much appreciated. Yes I have people I can take with me to the appointment that I trust, thankfully. Making notes beforehand will help I'm sure, cos that will help me focus and be clear. I'll let you know how it goes. I'll try not to stress in the meantime :)
  • steve51steve51 Posts: 1,596Member, Community champion Chatterbox
    Hi @Giselle

    No probs anytime !!!!

    Yes yes yes be "Confident" get it out the way !!!!!

    That's the way "GRAB"

    Please keep me updated !!!!

  • Sam_ScopeSam_Scope Posts: 3,352Administrator Scope community team
    Hi @Giselle how are you getting on?
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