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New, confused and worried

NAS73154

Hello everyone, 

I really don't know how to start this off, but I think I may be Autistic. I'm 38 and I suppose I've always known my brain doesn't work like other peoples and recently started to see that I share many traits with someone who would be considered Autistic. I've always thought of myself as "normal" but deep down I know I’ve been in denial with the person I am in real life not being the same person I am in my head - if that makes sense? 

Recently, I watched a video on YouTube of a girl of similar age who'd come to the same realisation and was diagnosed with Autism. Her experiences leading up to this pretty much described my entire life. This lead me onto many other videos of other people in adulthood who come to same conclusion and I couldn’t help but sit nodding along whilst welling up with tears. I was all of a sudden able to recall many instances throughout my life that just now made sense. Like a switch had been flipped.  I then went on to complete the Cohen(?) test and got a score of 31 saying I was within the Asperger bracket.

So now I want to arrange an appointment with my GP to discuss further and hopefully be referred for a diagnosis. But this scares me. It’s an enormous step and something I’m keeping private from my wife, daughter and work. I’ve googled “GP refusing to refer for Autism diagnosis” and the results fill me with dread. Many people seem to have issues getting past this point and are then stuck in a lengthy battle. I just don’t know if I can do it, I hate confrontation, can never properly articulate my points when put on the spot and I certainly can’t afford a private diagnosis either. 

I’ve read the NHS guidance advising to make a list of the reasons why I believe I am Autistic for when I see my GP, but is there anything else I should do or anything I can arm myself with if I face any obstacles? I have a lot of "what ifs" going around in my head at the moment, like "what if my GP doesn't believe me?" "what if I can't even get an appointment?" (my practice is operating on a first come first served on the day system, but you have to ring at 8:30am... which again worries me that at 8:31 all the appointments will be gone and I'll never get one).

My head is a bit fried at the moment because the way I see it is that it should be a straightforward pain free process.

I don't even want anything out of this, just the peace of mind would be enough right now

Thank you Slight smile

 

 

 

Parents

  • I'm at a similar stage to you, though I'm considerably older, at 60! Yes, I've come to a *very* late realisation! Lol! I had my light bulb moment whilst researching autism in order to help my granddaughter, who was eventually diagnosed 18 months ago. I've since read a lot of books, blogs and journals and watched a lot of videos. At the moment I'm making copious notes relating to how I fit the criteria, all the things I do, and have done, that match the symptoms/traits. I'm taking my time over this because things keep popping into my head that I'd completely forgotten about. I've also taken the AQ10, AQ50 and RAAD tests, and scored in the upper regions of them all. So ll be taking those with me when I see the GP as well. The questions, I think, aren't black and white, so I've annotated mine with notes, conditions and provisos. Basically, the more information/proof you can take with you, the better. I know I'll forget what I want to say, and/or just go mute or talk absolute rubbish, so I'll also write a little introduction script, just to refer to. The GP will probably send you away to fill in an AQ10, so you could save time by printing one off, filling it in, and taking it with you. You could make notes on it to, if there are questions that aren't black and white to you. You can find it online easily enough, just Google AQ10. You could do the AQ50 and the RAAD as well, if you feel like it, the more info the better!

    You are not obliged to inform your work, even if you get a diagnosis. However, some people do if they require adjustments to be made. As for your wife, I think it might be a good idea to discuss it with her. She might well have her suspicions already, or she might have no idea, either way she could be a great ally. Especially during the assessment when they often ask if there's a family member (usually a parent or a partner) they can talk to. Your daughter doesn't need to know until/unless you get a diagnosis, unless you feel you want to tell her before that. 

    I've had a couple of years to come to terms with the realisation, and it's taken me that long to decide to go for a diagnosis. Personally, I now feel relieved, rather than freaked out, by the thought I'm probably autistic, because it explains so much and puts my childhood/teens into perspective. It can feel overwhelming, though, I know. Try not to worry too much about being refused by your GP (easier said than done, I know), just make sure you take loads of evidence of how you meet the criteria to back up your request, and your test results. And remember, there's always the option of a second opinion if the first doc says "no", (which, if you inundate him with info and examples, he's unlikely to do). It's in our nature to second guess ourselves, and others, so it's no surprise you've got a head full of "what ifs". In some ways expecting it to be hard could help you, because if it does takes a while and is a struggle, you won't be surprised...

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  • I'm at a similar stage to you, though I'm considerably older, at 60! Yes, I've come to a *very* late realisation! Lol! I had my light bulb moment whilst researching autism in order to help my granddaughter, who was eventually diagnosed 18 months ago. I've since read a lot of books, blogs and journals and watched a lot of videos. At the moment I'm making copious notes relating to how I fit the criteria, all the things I do, and have done, that match the symptoms/traits. I'm taking my time over this because things keep popping into my head that I'd completely forgotten about. I've also taken the AQ10, AQ50 and RAAD tests, and scored in the upper regions of them all. So ll be taking those with me when I see the GP as well. The questions, I think, aren't black and white, so I've annotated mine with notes, conditions and provisos. Basically, the more information/proof you can take with you, the better. I know I'll forget what I want to say, and/or just go mute or talk absolute rubbish, so I'll also write a little introduction script, just to refer to. The GP will probably send you away to fill in an AQ10, so you could save time by printing one off, filling it in, and taking it with you. You could make notes on it to, if there are questions that aren't black and white to you. You can find it online easily enough, just Google AQ10. You could do the AQ50 and the RAAD as well, if you feel like it, the more info the better!

    You are not obliged to inform your work, even if you get a diagnosis. However, some people do if they require adjustments to be made. As for your wife, I think it might be a good idea to discuss it with her. She might well have her suspicions already, or she might have no idea, either way she could be a great ally. Especially during the assessment when they often ask if there's a family member (usually a parent or a partner) they can talk to. Your daughter doesn't need to know until/unless you get a diagnosis, unless you feel you want to tell her before that. 

    I've had a couple of years to come to terms with the realisation, and it's taken me that long to decide to go for a diagnosis. Personally, I now feel relieved, rather than freaked out, by the thought I'm probably autistic, because it explains so much and puts my childhood/teens into perspective. It can feel overwhelming, though, I know. Try not to worry too much about being refused by your GP (easier said than done, I know), just make sure you take loads of evidence of how you meet the criteria to back up your request, and your test results. And remember, there's always the option of a second opinion if the first doc says "no", (which, if you inundate him with info and examples, he's unlikely to do). It's in our nature to second guess ourselves, and others, so it's no surprise you've got a head full of "what ifs". In some ways expecting it to be hard could help you, because if it does takes a while and is a struggle, you won't be surprised...

Children