New here, not yet diagnosed

Hi,

I've signed up today after about 6 months of worrying. I think I might be autistic. It explains a lot; partly because it explains a lot, I'm scared that I'm not autistic and that I just suck at life.

I'm 22, I have a degree and I started another degree last year (retraining in the allied health professions). I've done well in class, but placement went horrifically and I'm not sure if I want to go back in September. 

I started questioning things when a friend that I got on really well with got referred for an assessment for ASD. I was curious because she 'seemed fine'...and I found the lists of traits from Rudy Simone, Martha Kate Downey, the help4aspergers site, and they seemed to chime with things. I know everyone says that you won't fit all the traits - I don't, but I fit a lot of them. I read books by Liane Holliday Willey and Tony Attwood's book and took loads of notes on what criteria I fit.

I didn't mind placement in terms of the technical stuff I was learning, but I couldn't cope with patients or staff. I just wanted to be left alone with a list of stuff to do but that's not the job. I was going home every night drained and so tired I was unable to speak.

And that's the weird thing. I live at home at the minute, but I've lived independently before...but I think I've regressed? I don't know. I'm scared to bring it up to my parents in case they dismiss it. Also I have hydrocephalus and everyone had really low expectations of me when I was young, I did really well at school so it's defaulted to "oh, she's fine! great!" but it all seems to be falling apart now. I asked a support worker at uni for help and he was confused and said I'd have been diagnosed by now if it was causing any problems, and he ended up joking about it. But it is causing problems, that's why I went to see him. That scares me if I go to my GP to ask for a referral. I'm pretty sure my GP thinks I'm overly anxious/hypochondriac anyway. 

I have to put everything in a diary if I have any chance of doing it - and I mean everything. Just because I'm not the stereotype...it's frustrating. And I understand the question of what benefit a diagnosis would give. It's too late for school, uni the first time round (and I might drop out of this second course regardless). But it'd give me something to start from, to understand why I struggle so much. I'd like a job, I'm just not sure what I'd be good at. That said, I'm reading lots of resources as if I have an official diagnosis and they do help.

I'm not even sure how an adult referral would work - I'm in Northern Ireland and there's lots of support but it assumes you already have a diagnosis or you're seeking diagnosis of a child. I don't want my GP to be unsure about where to refer me... I know some people are content to self-diagnose but I'm not. So anyway, hello - might see you around the forum.

Parents
  • Sadly, it's all too often the case that getting a diagnosis is like drawing teeth. I can understand why you can't settle for self diagnosis, as you show here, it leaves you with some worse alternative explanations, and they play with your head.

    Perhaps you'll find it helpful to write down a list of the things that concern you and take it along for a chat with your GP? I don't know about NI, but here GPs are supposed to have guidelines to adhere to when they are approached about the possibility, but it still seems to be very hit and miss affair to get a referal.

    Your uni support worker hasn't helped. Women are much better at hiding the behaviours and to say it would have shown by now is accurate, but misleading. Just because the traits show doesn't mean that people understand what they are, and will often seek simpler answers, like you're just a loony (you're not, by the way!), something along those lines.

    I think that there's a natural proces of maturing that affects the effects, if you see what I mean. I certainly feel it's true, others will think differently I'm sure.

    You need to be refered for an assessement, and usually you'll be sent some questionaires to fill out and return beforehand. I guess you've seen the AQ test, but the actual assessment is normally by interview with you (mine was 2 hours) taking into account the questionaire results.

Reply
  • Sadly, it's all too often the case that getting a diagnosis is like drawing teeth. I can understand why you can't settle for self diagnosis, as you show here, it leaves you with some worse alternative explanations, and they play with your head.

    Perhaps you'll find it helpful to write down a list of the things that concern you and take it along for a chat with your GP? I don't know about NI, but here GPs are supposed to have guidelines to adhere to when they are approached about the possibility, but it still seems to be very hit and miss affair to get a referal.

    Your uni support worker hasn't helped. Women are much better at hiding the behaviours and to say it would have shown by now is accurate, but misleading. Just because the traits show doesn't mean that people understand what they are, and will often seek simpler answers, like you're just a loony (you're not, by the way!), something along those lines.

    I think that there's a natural proces of maturing that affects the effects, if you see what I mean. I certainly feel it's true, others will think differently I'm sure.

    You need to be refered for an assessement, and usually you'll be sent some questionaires to fill out and return beforehand. I guess you've seen the AQ test, but the actual assessment is normally by interview with you (mine was 2 hours) taking into account the questionaire results.

Children
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