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GP visit requesting referral

Redstar

Hi,

This week visited my GP to request a referral for formal diagnosis of my strongly self-suspected ASD.

I consider myself to be very high functioning, but this has come from self-learned behavioral changes and learning from others by observation. I have felt I could be autistic for a couple of years now, having always felt different in many ways. I think I would have been happy to remain self-diagnosed, but I see possible advantages in a formal diagnosis as it will be more likely to be accepted by my family.

The GP did not seem highly interested, although the GP asked a question or two about symptoms and asked if I'd taken any 'tests'. I verbally gave a couple of symptoms and the difficulties I have, then handed over a list of 20 or so symptoms and examples I prepared. They quickly looked through and said "leave it with me and I'll see what I can do about a referral".

I'm not quite sure what to expect now. I don't feel the GP has a specialism or over familiarisation with autism, which is fair enough. I am not really anxious about what comes next, rather curious. I've read up about what can happen on this website and elsewhere. I am in my 30s, so I think the GP may also have been even more unfamiliar with ASD in adults.

I feel a formal diagnosis is all that I am seeking really. I am hoping it will provide some relief in final confirmation of what I have felt for some time, and also maybe it will provide some explanations to my family over how I was quite a difficult child in many ways! ASD is not understood in my family, and we have family members who I certainly feel have it, but this is generally met by skepticism when I suggest it.

One thing I did do before visiting the GP was get some of my old school reports from age 5-6 and I was slightly surprised how suggesting it was that there could be an interaction issue - and that an ASD diagnosis didn't come about during my earlier years. School was not easy for me, but compared to what many people have gone through I feel I have not had it too bad.

That's my little story anyway, wishing you all the best!

  • in reply to Redstar

    As a GP myself I fully understand the situation. The diagnosis will vary very much on who undertakes it, takes time, expert assessors few in NHS, so somewhat costly, long wait and may not be helpful for many, but is eventually available, but GPs referrals are monitored and they will get in trouble if spending too much on dubious referrals!

    For myself I was told by the lead doctor for ASD in the county that the fact I know the tests well and am a doctor, that the tests would be imposssible to interpret reliably, so no point in having them. However he did agree I have ASD and this explains a lot in my life.

    It is good to know for your own self management, but having a formal diagnosis as an adult is debateable and rarely necessary for anything formal. It could actually work against you for life insurance .https://www.goodfinancialcents.com/life-insurance-autism-or-aspergers/ and you could be refused or policy loaded. So there are some negatives. Going to your local community ASD group is a good idea and talking on here

  • Hi,

    Just to give an update on this. The GP made a referral and last week I spoke to a mental health nurse over the phone. She did a quick online test and is putting me forward for an ASD assessment. Very nice lady to speak to. She said there was a very long waiting list but just happy to be in the system and perhaps my criticism of the GP was unjustified.

  • You might like to read https://www.autism.org.uk/about/diagnosis/adults.aspx, especially the section on your GP's responsibilities. In previous posts, people on this forum have also provided suggestions to situations similar to yours. Some have suggested that you could bring your AQ and EQ scores and information about autism in adults when seeing the GP. Your list of symptoms and examples are great. My GP didn't seem very helpful at first but still referred me after a long delay. According to the NHS, I think the referral would be made in 8 weeks' time. If you haven't heard anything for a while, then you should call the GP's surgery and ask to be referred. 

  • in reply to Redstar

    Thanks Yes, of course second opinion is needed :-) and I'll do everything to get it. In general it is not important to me if anybody accepts me as ASD, I know myself best and know what I am (after years of blind searching :-) ), so a diagnosis or not - I am what I am :-)

    But being assessed by somebody without the right qualification makes not much sense. We need more professionals with awareness and understanding of ASD. 

    There is no question that there is the need for autism awareness training for healthcare professionals and the need to develop some tools to accurately diagnose and effectively treat mental health conditions in autistic patients. This is existing problem and not only in NHS. Also in Germany and the US have similar problems.

  • in reply to Rhia

    Sorry to hear about your struggles and your experience. I've heavily studied ASD this past couple of years, and I would not appreciate a hugely-clashing diagnosis from a 'generalised' professional. We probably have a greater understanding of ASD than them! It seems crazy how varying it can be who you see or are referred to, psychologists, psychiatrists, therapists or multi-disciplined teams.

    Always think about what is best for yourself - maybe just go straight to a second opinion and try and circumnavigate around complaining at this stage? Whatever you decide, good luck with your quest!

  • Your story is similar to mine :-) I have already got a referral from GP (after a second try - so around after one year!) and ... an assessment, YES! It was on Monday 25.02.2019. The interviewer was an Occupational Therapist... I hope she is better with other people, it didn't went well with me. It left me angry, confused, desperate, and depressed (or something like this) and yes, I will NOT give up. I intend to make an official complaint etc.  

    I hope you will have more luck and will have an assessment with a competent person.