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UPDATED 1st NOV - Starting to Path to Diagnosis at 50

UnicornGroupie

THANK YOU to everyone who has taken the time to reply to my message (below). The turnaround in the attitude of the Doctor has been remarkable. I sent my test results in, and she is now sending out a QA form to be completed as part of the referral process (I scored 7 on the Drs version online). Once they have this back, I'll be in a very long queue for assessment. It was a huge thing to make that call yesterday, and with your help, I am a tiny step closer to a better understanding of myself and that being 50 doesn't mean it doesn't matter anymore. 

I finally contacted my Doctor today to request a referral for the assessment for autism. After talking to me for a while, the Doctor said she felt I did show some of the traits of autism, but because. I am 50 she didn't know if I would fit the criteria for assessment as I have 'learned to live with it'. She did acknowledge the struggle it's been. She said it is only worth getting diagnosed if it would lead to me needing more support. Is this correct? She said she would speak to the other Doctors and text me to let me know if I tick the boxes for a referral. I know this sounds flippant; she wasn't being. She told me I could go to the local charity for autistic people, but I said I wouldn't want to do that without knowing if I have autism. I could be just wasting people's time. It would make a huge difference to me to know, even at 50. That's why I made the call. If I didn't think it would make a difference, I wouldn't have contacted my doctor. Please can you share your experiences or help me put this into perspective? Thanks.

  • in reply to Phoenixboy

    I'm happy to share my experiences with you, I did ask if i could go privately when I met the nurse, but she said that she has no idea what the procedure would be for that. So I'm just going to wait. I'm 54 now, so I'm sure I could hang on until I was 57JoyI'm sure I'll get there eventually, hope you do, too. 

    I have other health issues going on, too. So this is only part of the whole picture for me. 

  • in reply to Prof

    Thank you. She was only young a year or two into being a Doctor. I must seem ancient to her. She is an outlier at our GP practice so it really threw me when I got the response I did. Usually, they are really supportive. I didn't sleep at all last night as it just sat in my mind. Thank you so much for your support. 

  • Your Drs attitude is common unfortunately. Is there another Dr you could see instead? Finding one who is understanding and supportive can be difficult.

    If not then maybe trying to go private might be a good way forward. Don't let the gp put you off from this. You know yourself better than anyone and if you think you're autistic then definitely pursue a diagnosis.

  • in reply to UnicornGroupie

    If it helps, make a list of your traits and how they affect you. I found a face to face appointment easier. I video call wouldn’t have shown my body language or lack of it. Unfortunately GP,s are the gatekeepers. If you go down the private route then you can self refer. I’m still on the NHS list but not too bothered as it’s giving me time to explore a lot of my own thoughts.

  • in reply to Phoenixboy

    That's good news that you’re in the queue for assessment. It does seem a long time but knowing can make such a difference. If I can get on the wsiyinv list i’ll also start saving and see if I can raise the money for a private diagnosis if I can do that quicker than the waiting list. I just have to see if I can get on the list first. Thank you for sharing your experience with me and for your support in means a lot. 

  • in reply to Dawn

    Thank you. I am struggling. I just csn’t keep pretending it's exhausting. I’ve taken the AQ50 this evening and got a score of 41. So it does look likely. Thank you for your support it means a lot. 

  • in reply to Roy

    Hi Roy,

    Thank you for your advice. It’s really appreciated. I’ve just taken both of those tests online and scored 41 and 37. I’ve taken screen shots of the results and will send them into the doctor tomorrow. Hopefully it will help me get a referral. Thank you.

  • I'm 54 now, I'm on the waiting list to be assessed through the NHS, had initial referral from my G.P, whom seemed a bit shocked at the time. As she probably didn't expect me to come out with that little bombshell, but I've known her for 20 years & she seemed supportive. As we know most G.P's don't specialise within this field, more of an all rounder. I'll probably have to wait around 3 years now for the assessment, I've already seen a mental heath nurse, whom my G.P had initially referred me to see, first, then the nurse referred me for the assessment, but said there was a 3 year wait. 

  • Drs do make me cross with that attitude. We cope until we don't. And it's seeming to cope that does the long term damage. That assessment is important. You meet the criteria for one if you show enough traits not if you seem not to cope.

    As for the charities, we all know there is a diagnostic crisis and most people accept self-identification as valid. If it's a case of you being unsure yourself you could try an online AQ50. It's not a diagnosis but will give you an indicator of the likelihood.

  • Hi, it sounds like your gp is trying to fob you off, your age isn’t really relevant, I was 54 when I approached my gp and was referred. Have you done any online test such as an AQ50 or Radds-r test. You could use these to reinforce your request. An assessment can be carried out on an older person. A questionnaire normally would be filled in by a parent or carer, if there are no parents then your own input  is totally valid. If the nhs route doesn’t workout then there is the private route.