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difficulyt getting diagnosed

bec

hi

let me start from the begining, I have always had difficultys all my life with aspects of socialisation, making friends, changes in routine, diffuculty in coping in new situtations and understanding others i.e taking to heart comments made either sarcaticly or just misunderstanding the conversation. I could go on,

 In 2005 I had to go and see a psycologist through work, we discussed personal experiances and social interaction, he asked in depth questions and touched on whether I could be on the autisic spectrum something I knew little about. He refered me to my G.P to try and organise a formal diagnosis but my G.P ignored this request and said i was depressed and put me on antidepressants and refered me to a mental health nurse.

Frustratingly to my psycologist nothing ever came of his request for diagnosis and I continued with life. In 2009 I changed jobs to progress my career, however the difficults in coping with the change of situation and trying to interact with the new people was overwhelming and although I had not coped well in my previous job I kept the feelings to myself and my anxiety levels increased inside. As the anxiety of each day increased my behaviour became increasingly irratic and i was socialy isolating myself from my collegues i came to the conclusion that I needd to resume seeing the psycologist. Previous converstaions came up about when he had tried to get a diagnosis for aspergers he felt that it needed to be persued as he felt that I had traits of AS but felt that I needed to get a diagnosis to help me understand that  I cannot change the way i react to situations but understand them better and that I could expalin it to people i work with.

Since then I have been refered back and forth to my G.p who does not belive that I have AS and continues giving me antidepressants and again i have been refered to the mental health team and the person i spoke to said "everyone feels like that so everyone would have AS" no answer to me. However I have been refered to a doctor who specialises in adults with AS but I have not had a reply as yet.

Sorry this is so long but I feel that if my psycologist feels that I probulary do have AS and the reading i have done around the subject I feel many of the traits are of me, why is it so difficult for adults to get diagnosed.

can anyone advise me of a way forward, or any advise on how to expain it to others because I cannot.

 

  • Hi Bec,

    I can relate to your frustrations nd difficulties.

     

    I have always experiences difficulties in life both socially and i work/academically. About 2-3 years ago I was a covering manager and I worked with two individuals on my team who were both Aspies and one of the individuals I got on with really well and found I could relate to so many of his behviours and did for a while suspsect I may also have asperger sydrome, but I dismissed it.

    The reserve manager job started to get hard for me when they increased the amount of paperwork & E-Learning invovled. I really started to notice more and more my inability to read through documentation, retain information I was reading - and more - difficulties I hadn't noticed on this level since my attempted college days. I then suspected mild dyslexia - so I began researching. Went to my GP who was useless and left it at that.

     

    By chance I was having Occupational Health referral at work for something else and she asked my about work and I began explaining my diffifculties so she set up a referral to assess me for potential Dyslexia. I had the assessment and was told that yes I showed sensitivities that suggested dyslexia but there was much more to it.

     

    Apparently I kept zoning out and I knew the tests and the questions were getting me agitated, but apparently this was also very visible to the assessor and she said I needed to to go back to my GP because she felt I had an attention problem. She also recommended at specialist referral through work for further assessment, but work have refused this so far.

     

    Anyway I spoke to a different Dr, gave her several pages of notes about my behaviours and difficulties that make life difficult. She read through them in her own time. we a further conversation based on my notes and she referred me to a mental health nurse and her colleague. We talked about my behaviours and difficultes. They asked questions and concluded Im an Apsie with ADHD. The mental health nurse said she wouldn't refer me for further evaliation because I am not a risk to  myself and I should join self help groups and keep researching. but then in her letter to confirm this she said if I wanted further assessments I just needed to speak to my GP to look at actioning this. So because work won't help any more yet (because the think my GP should be providing more help first) I am going back to the GP in just over a week to see if I can get further help.

     

    But it's still early days for ASD and ADHD diagnosis - still too many believe theses are just childhood issues that you grow out of. If you wana chat, just ping me a reply.

     

    Regards, Steve

  • We have a very good GP who was very open minded about my partners request..the problems started when he got referred to MHS..talk about having to repeat yourself.

    I am not surprised to hear you had this experience Longman but I am deeply shocked and saddened by the lack of understanding you were shown.

    It's hard enough trying to get our child assessed at the moment..but an adult...it's utterly frustrating.It would appear that yet again the service you receive largely depends on your postcode. 

    Although we dislike taking the line 'we know our rights' sadly this is the stance we are now going to have to take to get assessed. 

    There is also another worry here too, and that is if the assessment rules out ASD in my partner and child. After all the pushing to get them assessed are we then going to be dismissed out of hand? Not a nice thought because at the end of the day my partner and son need support whether the outcome is ASD or something else...it's an unpleasant situation to be put in and makes us all feel a bit paranoid. 

    We do understand your exasperation Bec. Please keep going and I hope you find the answers you need soon.

    x

     

  • My GP has been alright on other things, including cancer with complications in the intervening years (I've had two close shaves with death), but for some reason he just cannot seem to deal with or discuss adults having autism. And as I've spent years on committees and disability forums, I've never managed to make any headway with reform locally. I should not be surprised to see GPs still being unsympathetic in ten years time. It needs a lot more than the good will gestures to review how people on the spectrum are treated - it needs much bolder action by NAS and other advocacy groups. Sorry to sound unappreciative NAS but I don't see much change in how people on the spectrum are treated by health or other public services.

  • Before getting diagnosed, a psychiatrist at the CMHT referred to asperger's as a 'disease'!!!. You can imagine how angry I felt

  • The GP who made a mockery of you like that was clearly not acting in a professional manner. This type of behaviour should not be acceptable, and it might be a good idea to complain to the Patient's advise Liason service. It is very unsettling to hear that there are GPs out there who are so rude to their patients. It might also be a good idea to consider changing GPs.

  • I contacted my county centre for diagnosis for information about aspergers beforehand. They told me I had to go through my GP. When I got obstructed by my GP I went back to them and they rearranged the psychiatrist appointment to go direct to seeing a specialist in aspergers.

    This obstructiveness by some GPs does not make sense to me. As you indicated you've been treated for a long time for other things. That treatment costs NHS money. Misdirecting people is not an economy, its about established prejudices in the NHS.

    There are various consultations going on to supposedly improve the speed of diagnosis, and the enhancement of support for both children and adults. My own efforts to contribute to these have got back platitudes and vague promises. I'm worried these are just talking shops aimed at box ticking (excuse the mixed metaphors there).

    GPs seem to be one crucial area for NAS to campaign to improve.

  • hi

    thanks for your reply, I am glad others have the same difficulties getting a diagnosis, i have had the same comment from others including my G.P of aspergers only affects children, and my comment about trying to explain it to others was met with disbelief and scorn.

    how did you manage to get an appointment with the countrys diagnosis centre because I seem to be failing at every door.

    I'm glad that you have good coping stratergies I unfortunatly do not and struggle to change and cope.

    bec

  • I had same trouble six years ago. Went through my GP to get a diagnosis (all I wanted at the time was to know whether autistic spectrum literature would help improve my coping strategies). My GP referred me to a psychologist, on the grounds I was later informed, that aspergers only affects children and they grow out of it. I got it overruled by going through the county diagnosis centre, who got me an appointment from which I got the diagnosis. My GP however wont discuss it. Last time I asked he said something witty about isn't that a new kind of vegetable? Its not that I need his help. I manage fine having already had good coping strategies and having improved them with the diagnosis. What annoys me is GPs can act like that with complete immunity. Makes a mockery of the whole disabiliy equality legislation.