NHS adult diagnosis - options?

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Well, having plucked up the courage to see my GP and been fortunate enough for him to agree to refer me to the Community Mental Health Team, I was asked to make a routine appt with my GP about the Asperger's referral request.

I always get really anxious about doctor's appointments - I never seem to manage to express myself well - but I really want to find out if my instincts are right about me having Asperger's so I made the appointment. Headed to the health centre only to find that my doctor was off sick so I had to see another doctor - one I don't really get on with. Thought about cancelling the appointment but decided to go ahead anyway. Wish I had trusted my instinct!

The doctor seemed very dismissive and cold towards me, and basically told me that he doesn't think that I display any characteristics etc to justify considering AS. I explained about my 'lightbulb moment' when I attended an Autism Spectrum workshop and recognised myself in the descriptions, and said I'd done some online tests - the AQ test, EQ and SQ tests - and he dismissed those - he wouldn't even look at the results. I scored 44 on the AQ test, and my EQ/SQ result was Extreme Systemizing. He just said that I have "ingrained personality traits" (?) which he believes explains my issues with anxiety and depression.

I got very upset and distressed, and ended up leaving the room, apologising for wasting his time. I feel so confused and mixed up now - why does one doctor accept my idea and agree to refer me, only for his colleague to mock the idea and dismiss it? I honestly believe that I may be on the Autism Spectrum, and I really want to find out more. I don't know what to do next - I just feel that my world has been turned upside down.

Sorry for waffling on but I needed to share my experience.

MillyMollyMandy ...



That sounds like an awful experience. It's quite normal to be all tongue tied and confused if you have AS and it sounds like the AQ test is pretty indicative. The doctor should have accepted this.

44 in the AQ is a MASSIVE score. I don't think I scored that highly.

You know what - I'm 50 and I have a diagnosis of AS from 9 months ago. I don't show ANY outward signs and I'm not borderline.

We're not all Rain Man.

My advice would be to book another appointment with your doctor and accept no substitutes. As much as you are able try to put this horrible experience behind you and focus on the relationship you have with the doctor you know.

I know that you live in Dorset, I get good support from Hampshire Autistic Society. If you feel it would help, I could probably meet you at one of their coffee mornings. I believe that there is one coming up on 28th February at Redbridge Fire Station in Southampton if you could make it.

Don't despair - this sort of emotional bumpy ride and lack of understanding from others is typical of AS. You have friends here.

If you want to Direct Message me, please feel free.

Thank you, Barnabear, for the wise words and the reassurance - I will make an appointment to see my regular doctor and see where we go next. I also have a therapy session on Tuesday so I am hoping that will help me to sort my head out a bit. I don't think I could make the Hampshire Autistic Society coffee morning - even the thought makes me go into anxiety overdrive - but I do appreciate you making me aware of it etc.

I have done a lot of reading and research, and understand that AS females do tend to be good at imitation etc so they can fit in - being a chameleon - and that they often manage to fool people. I know I am geeky and find social interaction incredibly awkward - I have always been like that - but I manage to 'act normally' as much as possible in social settings. And you are quite right - the usual stereotypes don't always apply.

Anyways, I am determined not to let that doctor upset me any further so I will work on picking myself up and getting the courage together to see the other doctor

Thanks again for cheering me up - it is so comforting to know that there are people out there who understand and can be supportive.

Yay - way to go MillyMollyMandy

I have seen my therapist and discussed the situation with her. She explained the way the referral system should work. Apparently the GPs are now responsible for agreeing funding for you to be assessed - I understand that this is as a result of the Autism Act 2009.

The GP should ask you to complete the AQ and EQ screening tests so that he can decide whether to refer you or not. I think you can take your results in with you to the appointment to save time - if you do this, though, be aware that not all doctors know what the AQ and EQ tests are!

If your AQ and EQ results fall within the criteria the GP may then decide to refer you for further assessment.

This is where things vary depending on where you live - the so-called postcode lottery.

If your area has an Autism/Asperger's Service you can be referred directly to them by your GP. Otherwise you should get to see either a psychologist or a pyschiatrist.

A good starting place if you want to find out more is to do a google search for Asperger's Services in your county - that way you can find out if there is a local service available and you will be able to advise your doctor about this - apparently GPs tend not to know about such things - and this can help them to refer you to the appropriate place.

(Barnabear has already mentioned the google search bit in this thread - and it worked for me)

Hope this is helpful - and my apologies in advance if this is not how things work in your county.

If you contact the National Autistic Society they will send you a list of the NHS and private diagnosticians in your area. If you don't like the phone you can use a contact form on their website though they do take a few days to reply.

MillyMollyMandy

Sounds like progress, so you should be able to meet with your original GP feeling better informed.

Since the appointment was supposed to be "routine" presumably it's just part of the process, it's just that the locum failed you badly.

Good luck, keep going ...

Hi MillyMollyMandy, how's it going?

I have to admit the lottery of NHS is making me delay going to the doctors for a diagnosis. I dont have the energy to fight it. My plan is to write a list (ha, that is aspie in itself) with all my particular traits and on-line test results and some info as well. I would hope that there are some services because there is an outreach base round the corner from me. I am not looking for treatment just a diagnosis so I know.

I've posted this over in the main GAD forum, but you might find this info helpful. NICE have produced guidance for ADULT diagnosis and treatment,

The index is here: http://www.nice.org.uk/CG142
Interactive pathway is here: http://pathways.nice.org.uk/pathways/autism

It's still a bit too fresh to be known and adopted by all GPs, but it gives some clues to how best practice referral and treatment should work. Simon Baron-Cohen has even produced a 10 item screening questionnaire that can be used by GPs that should be sufficient for administration in a short appointment.

Jason.

Anyone had any experiences in the Warwickshire/West Mids region?
Would be very helpful.

In my opinion the AQ-10 is too small to be useful and it's really easy to rehearse the "right" answers to get referred for a full screening.

The only thing I can think of that the AQ-10 might be useful is where the patient doesn't present wanting to be screened for ASC, so the doctor is using it in a more general situation where ASC is just one of a number of possibilities under consideration.

It would be naive to think that if someone wanted full screening that they wouldn't give the magic answers to be referred.

The AQ10 is meant to be a first line screening test and probably does a reasonable job for people who have not seen the test before. It is really only there to screen out people who are obviously NT.