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long wait for diagnosis

Lellynelly

I am a 51 year old woman self diagnosed with HFA. After a close friend suggested that the root of all my emotional and social problems could be down to ASD it was like a light went on. looking back across my whole life and talking to other friends it is so obvious. So in April I decided to go for a formal diagnosis. It took 4 weeks to get a response from the Asperger service to which I was referred. I filled in the AQ 50, the EQ, and the relatives questionnaire and returned them. weeks went by, but today I had a response. A letter telling me I fit the criteria for a formal diagnosis, but I may not hear anything for 18 months due to a long waiting list!

18 months??!! My husband asked why I am disappointed. I want to be able to tell my close friends and family that I am autistic in the hope they will be more understanding and patient with me, but without a formal diagnosis I know that I will not be believed.,or I will be belittled. I hear so many phrases like 'ooh, she's a bit autistic' or 'we're all a bit autistic' spoken by people who just don't have a clue what they are talking about! It seems to be an 'in' word to describe anyone who is a bit odd, or particular, or pedantic. And of course, I look 'normal' I have a job, and am married.

When I have a formal diagnosis I will be able to say 'No, I actually AM autistic' and I will have the opportunity to explain to them just how difficult my day to day actually is!

I just really needed to sound off and wondered if anyone else encounters mindless comments when ASD is mentioned, or if anyone else has had to wait such a long time for a diagnosis

Parents

  • Hi. 

    I understand where you're coming from. It took from my first self referral to my gp to getting an appointment with the psychiatrist nearly a year. I was beginning to wonder if I'd bee forgotten. I've had loads of comments throughout my life of people joking I had autistic behaviours and I'd laugh them off while internally thinking that I actually was on the spectrum. 

    Now I am officially autistic I don't feel I want to tell everyone now. I've told a few key people (family and manager) but other than that I just feel that's my label. You accept me for who I am, as I am or just have nothing to do with me. It's your loss not mine. This may change in the future once I've become used to it or feel I've done something where that excuse will rescue me. But for now, I'm trying to discover who I am after trying to be someone else for so long!

    regards. Lee

Reply

  • Hi. 

    I understand where you're coming from. It took from my first self referral to my gp to getting an appointment with the psychiatrist nearly a year. I was beginning to wonder if I'd bee forgotten. I've had loads of comments throughout my life of people joking I had autistic behaviours and I'd laugh them off while internally thinking that I actually was on the spectrum. 

    Now I am officially autistic I don't feel I want to tell everyone now. I've told a few key people (family and manager) but other than that I just feel that's my label. You accept me for who I am, as I am or just have nothing to do with me. It's your loss not mine. This may change in the future once I've become used to it or feel I've done something where that excuse will rescue me. But for now, I'm trying to discover who I am after trying to be someone else for so long!

    regards. Lee

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