Any advice re adult diagnosis? | Ambitious about Autism
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Any advice re adult diagnosis?

Dizzy90's picture

Any advice re adult diagnosis?

Tue 8 Jul 2014 9:32am


I posted breifly in the introductions section here, but I am going to be seeing my GP soon to start looking at diagnosis and wondered if anyone had any advice about the best way to handle the appointment?

I've been reasearching online and it seems that some GP's can be a bit reluctant to offer refferals and some lack knowledge on the system? I'm really anxious about voicing my concerns out loud to someone other than my boyfriend for the first time and one-one conversations aren't easy for me at the best of times!

I'm 24 years old and have no contact with my family at all (very long and complicated story!) but have my boyfriends full support as he feels there is serious weight to my concerns. We have been together for 7 years so he knows me inside out and has experienced my issues first hand - I read online that sometimes they like to involve family in the process especially re history as a child, but I don't have that available - will that hinder the process?

Any advice or shared experience would be greatly appreciated!

The stars and the moon will be gone too soon, and tomorrow becomes today

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  • fixmatop's picture

    Hi Dizzy90

    I got my diagnosis in my teens and had the support and backgroundinformation frm my family, so I don't have experience of going through adut diagnosis.  However, there are many others here who have and I'm sure will come and share there experiences.

    However, I do know how hard it is speaking to your GP or anyone about these things no matter how much support you have and wondered if you felt you were going to have difficulty explaining things if you could write your worries down and give the written information to you GP, with your concerns and request fro diagnosis.  Also it may be a good idea to take your boyfriend with you for support, if you aren't already.

    Kim - Community Champion
  • Dizzy90's picture

    Thanks Kim - love the idea about writing down some of what I want to say, that'll be a huge help to me I think! Smile

    The stars and the moon will be gone too soon, and tomorrow becomes today
  • Tallulah's picture

    Hi Dizzy,


    Your GP is the right place to start. I agree that writing things down is an excellent idea. Your GP should be able to ask the right questions to get the information they need if you haven't included it. Just be careful how much you write - many autistic people have a tendency to write too much detail. You're not looking for a diagnosis at this stage, you're just looking to highlight the important reasons why you think an assessment is warranted. Keep it to one side of A4.


    Parental input is often used in assessment because they need to establish that your difficulties have been lifelong, as if they are more recent then it is not autism. But it is not essential to have parental input, there should be ways around this to cater for people in your position, or for older people whose parents may be deceased. Do you have any family members who remember you in childhood, or school reports that mention issues, or memories of difficulties you faced in childhood or in school? In any case, your situation should not prevent you from getting a diagnosis and they will be able to find a way to assess you.


    I also agree that taking your boyfriend would be a good idea. One of the features of autism is that we often don't see ourselves as others do. For example I've only very recently realised I look very nervous a lot of the time. People often assume I am nervous and try to reassure me when I say I have difficulties, when the actual problem is that I am giving off the wrong facial expression leading to misunderstanding. So taking your boyfriend would allow you to present not only your own experience, but also the difficulties as seen by someone else. Perhaps your boyfriend will help you write the list of important points to mention, or give some examples of difficulties he's witnessed.


    It's also worth mentioning why you want to be assessed. Some doctors seem to assume that anyone seeking a diagnosis is doing so because they want to claim benefits. It can help to explain the ways a diagnosis could help you make improvements in your life. Some benefits of diagnosis would include appropriate support in education, more appropriate mental health support if needed, taking appropriate steps to develop coping skills, finding a job to suit your skills and difficulties, or finding ways to communicate better with your partner and understand each other better. Keep this bit brief, but it's worth mentioning something about why a clear understanding of your difficulties would help you.


    It may be worth asking for a double appointment on this occasion.


    Another thing worth trying is to contact a local autism organisation if you can find one, and ask if they happen to know if any particular GP at your practice has a special interest in autism in adults, as that would be the best one to see. It might not be possible to get any information about this, but worth asking.


    I hope your appointment is productive. Let us know how you get on x

    Laura - Community Champion
  • jalos's picture

    Yes good luck with your appointment. Watch out for the mental health road, if you go down that path you could be banging your head against the wall for many years to come. 

  • Fudgepup's picture

    I am currently going through diagnosis, having been referred by a neuro-psychologist. I am in a similar situation in that parental involvement in the process isn't ideal/I a m worried about their involvement. So far I have taken lots of tests, interviews and filled in many questionaires. My partner has also filled in a few questionaires about me. Its a detailed process but is very revealing. I would be interested to know of your experiences during your diagnosis. I am 38 years old and it seems that there are many people of my age who have missed diagnosis during childhood.

  • Simbi's picture

    Unfortuntely, despite the new NICE autism guidelines, there is still a lot of inconsistency around the best methods to assess adults for Asperger's/HFA. This means, that depending on where you live and the view taken in your local diagnostic team, you may have difficulty in obtaining more than the label 'working diagnosis' if you do not have a 'reliable informant' to comment on your early developmental history. Do read my previous posts on this issue (Under 'Adult diagnosis: a working diagnosis'?) for the relevant background. I live in Somerset and this is currently an issue within my local diagnostic team. It is something that I have challenged, and am making some progress in affecting change. However, because this issue had not been competely resolved to my satisfaction I cannot write everything I otherwise would openly on a public forum. You may send me a private message if you would like to discuss the issue of parental involvement with me further and gain further access to my personal experience (in fact I would welcome more input from persons directly disadvantaged by this problem as I am considering taking the matter to the NAS as I feel using the term 'working diagnosis' inappropriately is potentially very damaging to both the autistic persons sense of identity and to their ability to readily access potential services). 

    Regarding approaching your GP, the NAS website have produced an excellent GP guide. I wrote to my GP before my face to face consultation (I find verbal interaction very difficult) and included this fact sheet for her information. It turned out that I was the first 'high functioning' female to request a referral for autism diagnosis that she had seen in 15 years of practicing, so it was definitely worth assuming this lack of knowledge. Your GP will need a clinical reason to refer you, so do follow the advice given in Tallulah's reply.

    All the best,


  • Dizzy90's picture

    Thank-you all so much for your replies, all your information is really helpful. I have begun to make some notes to take with me, but as has been mentioned I do struggle to keep things brief & am definately guiltey of including far too much detail in my writing (I never knew that could be related Autism/Aspergers!).

    Simbi, I would definately be interested in speaking to you further re diagnosis without parental input and would be happy to share my experience as I move forward with this. My biologic father left before I was born and while my Mum is still alive, she is severley disabled and suffers from extreme mental health problems meaning even if we did have a healthy relationship, she couldn't be relied upon to help with this process. I have no other family and no one in my life currently who has known me since childhood. 

    My boyfriend has been in my life for almost 9 years and we have been together for 7 so will be able to share his experience of my issues over that time period which I'm pleased to hear may be usefull - he is coming with me to the initial appoitment and is keen to be a part of the process. 

    Thank-you again for the advice, I will continue to visit the forum during the process and I'm sure I'll have a lot more questions! 

    The stars and the moon will be gone too soon, and tomorrow becomes today

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