Published on 12, July, 2020
Hi everyone,
I'm 27F and I've been waiting for my diagnosis for 2 and a bit years now and finally have my assessment appointment next week! I have so many different feelings about it though, I'm sort of excited that this could finally be it, the answers that I have been looking for for so long, but what if I'm not? I so desperately want this diagnosis because I have always felt there is something "different" about me and all signs seem to point to this. I studied it in college and worked with teens with ASD too and noticed a number of similarities between the kids I worked with and myself. But I feel like I'm "not Autistic enough" to get the diagnosis and I'm scared that they will tell me I don't have ASD because I'm so sure that there is something and if it isn't ASD then I don't know what else it could be. It almost feels like a test that I have to pass and I need to prepare for it but I don't know how! I know that if they ask me questions I will freeze like a rabbit in headlights, I can't seem to articulate all of the thoughts and feelings I have towards it and say it in actual words. I put as much detail in the "tell us more.." section of the last questionnaire as I could possibly think of but since sending that back to them, I've constantly thought "I should have put that in there too!" but I don't know how to contact them if I were to give them more info, but I don't know what to expect from my appointment, what questions will they ask? What if it's not actually relevant and I come across silly? They said to bring someone with you that knows you well, I'm bringing my Mum, she's always thought I have ASD but she doesn't know an awful lot about it, I've asked about what things in my childhood were significant and she says about my friendships and the way I played, and that I flapped my hands a lot, but other than that, nothing seems to stick out from my childhood and I feel like if I were to have ASD then there would be more to say about it?? Surely someone would have seen more in me, all though school (both primary and secondary) I didn't really struggle with much academically, I was just the "weird kid" and struggled with friendships. There's only a select few people in my life that have noticed things without me telling them. I've never understood the whole concept of masking, well I do, but is it something you can be unaware of doing? Because it's become so normal to you? I don't know, I'm more comfortable at home, and I do things at home that I don't do elsewhere, I suppose it's more of a "I know better" than to do these things outside of my home because it's weird if I do? I have been looking into different stims recently, I have always been a "flapper" but over the past two years (since my partner moved in) I seem to have developed a love for repeating sentences and vocalisations, to a point where I get urges to say them while with other people and have to stop myself because my partner is the only one who understands it, and I'm a chewer, always have been.
I also worry about what happens next, is it up to me to find out all the ins and outs of what makes me Autistic? Like, I've done my research and I have a list of reasons why I think I am, but that doesn't tell me how to learn to cope, and I'm curious to discover if there's more to it than my list.. Different things that I struggle with that I have not linked to ASD, could they also be because of that? Is there someone that can help me with this? I feel like there's so many different things I struggle with and I'm not sure whether this is why or if it's a separate problem, I suppose apart from talking to you guys, I feel quite alone in this.. I have so many questions and don't know who I can ask. I suppose I just want someone "official" that can validate my worries and feelings because deep down I feel like I'm kidding myself. If they tell me I'm not, I don't have the self confidence to be self-diagnosed, I'd feel like a fraud and I'm stressed because I feel so sure that this is it but if I'm told I'm not I don't know where else to turn to.
I'm sorry for the brain dump, it's just at this point I don't really have anybody else to talk about it to that understands probably more than I do. I can't wait for next week but at the same time I'm so stressed and worried and scared by it.. Any advice?
I’m a 24F and just got diagnosed a month ago. Your post really resonates with me as it’s very similar to what I was feeling (and still do feel) before/after my diagnosis. I wish you the best of luck with the process, and I think you seem to have done a lot to work to identity what things you struggle with which is wonderful. Something that helped me is that I’d say to myself that no matter the outcome, the whole process has allowed me to learn a lot about myself. I haven’t received my report yet which I imagine will be helpful, but I’ve found that the whole assessment process enabled me to process and identify with what I find difficult, and also communicate this to my family through talking about things. It was a very difficult process as I’m sure you know but I think it is such an important part of understanding yourself, diagnosis or not. I hope this makes sense and again hope the next few weeks are easy on you , well done for getting this far and reaching out as well - you should give yourself some credit! All the best
I find if I write things down I can list them off and talk about it but if someone asks me why do you think you're Autistic, I find it so difficult to explain it and feel like I'm clutching at straws.
I'm pretty open with my immediate family and my close friends, they often ask how the process is going etc. and if people ask me about it I will happily tell them that I'm awaiting diagnosis and all that but I'm not forward with it, if you get what I mean? I feel like I'm lying to people or I'm attention seeking if I tell people I am, even though I do think I am But I don't have the official "yes you are" to feel like I can tell people..
I am 54M and have mine next month and are having similar thoughts. I even want to do my second appointment in person as I feel I can come across better. After all these years masking I can largely come across as 'normal' but need to completely usmask for the first time ever with another person. It is scarey but I am sure you will get through it, atleast you have your mum, I am doing this totally alone. Good luck.
I wish you luck, But as someone so young I'm sure that you will get the validation you need to get on with your life.
I would have loved to have known years ago but now I am too old to worry about the diagnosis, however I know the results anyway. When I was going through the process if deciding to get mine. got stuck on the will I or wont I part, Then I realised that it just didn't matter, I'm not looking for jobs, assistance, recognition or handouts just to put my mind at ease, Which is stupid, at my age, who cares. My grand mother taught me how to mask and she had no idea what I had. and her teachings have served me well over the years. there are not many people that will even look twice at me when I say things without thinking, they might be putting it down to senility, lol I can get away with thing now.
just remember whatever the results, the only thing holding you back, is your own mind.
Same! I have been to endless doctors, physiologists, therapists, psychiatrists and been diagnosed with depression, anxiety, low self esteem but no treatment ever helps. I totally understand your worries about your diagnosis. I feel the same way I think, I’m actually scared to NOT get diagnosed because then I’m just back to square one. Are you open with the people around you about how you feel or do you find it difficult to explain?
It's lovely to know I'm not alone, it sounds silly but I wish there was someone that I could go to and just pour everything out and have them tell me if this is why I feel this way. Not as an excuse, just a reason, like do I have these feelings and struggles because of ASD or if its something else. I've had counselling before, and I explain things I struggle with but they tell me that my answers on their tick sheet tell me that I don't have depression or anxiety and everything happening in my life seems to be normal, but I still struggle!
Hey, I wish I had some advice for you but all I can say is you’re not alone. I (36F) am waiting for my assessment too and I feel and worry about almost all of the things you have said. I hope someone can give you better advice but just know, you’re not alone!