Newly diagnosed, and feeling a bit lost

If you'd had no reason previously to suspect that you might be autistic, then I can fully understand your sense of shock and confusion. My relief stemmed from the fact that I had spent my life feeling as though I didn't quite fit in, and finally I had an explanation as to why I was the way I was. Whilst my diagnosis hadn't come as a complete surprise to me, there were moments when I felt overwhelmed by it and would feel tearful.

I totally understand this. I spent at least two weeks trying to process it and yes I did cry (a lot) but it gets better. It's like you have to learn to accept yourself all over again but then you realise you haven't changed at all!  Stay strong everyone here newly diagnosed. I'm about a month in from my diagnosis and to be honest it's nice to know I'm not the only one going through this process.

It's interesting that you felt relieved. I guess I feel kinda relieved, but, at the same time, I feel completely thrown by the diagnosis. I'm trying to see it as a good thing to be able to move forward with this knowledge when I didn't have this knowledge before, but I'm still finding it hard not to break down and cry every 2 minutes

Thanks Dawn, for sharing. This is an excellent point, thanks for saying it:

Dawn said:

Some folks feel they have no choice but to keep hiding behind the mask. I understand why. But that's a tough road that will burn you out.

Hi,

I was in my early 40s when I received an 'unofficial' diagnosis (my local CCG wouldn't agree to fund an 'official' diagnostic assessment, so my GP had got me to do an online AQ test). The diagnosis came as no surprise because I had always felt as though I was on the outside looking in, and had found life a constant struggle.

Initially, I felt relieved and had no qualms about telling friends and family I was autistic. My friends were and continue to be supportive, but with the exception of my adult son, I found that my family were indifferent. 

I can relate to the feeling of being lost. After my diagnosis, I had naively believed that my GP would refer me elsewhere for some form of post-diagnosis support (one-to-one counselling, etc). When that didn't happen, that's when I came crashing back down to earth and felt lost.

First of all congratulations :-).

As for telling people, oh boy. Depends on the people. Personally, I'm loud and proud. I even have a collection of Born Anxious T shirt..."Woke up autistic again". Lol.  But then, my friends get it and my work place is brill and I ain't the only autie on the team. My mother always knew there was something and is upset she couldn't do anything to help when I was little, but then that was the 60s/70s when no one got it. Bless her she paid for my assessment now.

But others aren't so lucky. Some are surrounded by people who don't understand or who will worse take advantage.

Maybe tell one person you truely trust to start with, then enlist their help to choose who else might react well.

Some folks feel they have no choice but to keep hiding behind the mask. I understand why. But that's a tough road that will burn you out.

I'm so glad that it's been liberating for you. I actually told an allergy doctor during an appointment this morning about my diagnosis because I felt it might be relevant in relation to my food intolerances, and he actually responded very well, and even closed the blinds so it wasn't so bright for me. It felt great! 

Oakling said:

I feel more able to be myself and I don’t worry as much if my mask slips so to speak.

This is brilliant - what a wonderful thing to happen to you! 

Oakling said:

I am quite selective on who I tell at the moment though.

Do you mean you only tell people where you feel it's relevant? (i.e., you wouldn't do, say, a Ted Talk on the topic of autism at the moment?)

Thanks for your reply

Thanks for your reply, I think my parents would dismiss it too if I tell them. I'm trying to take this all as a great leap forward, but I still feel like I need to spend the weekend (at least) sobbing in my PJ's. I've told my husband that I won't be able to do anything for the next few days while I process this 

Hello there.

I’m close to a year after my diagnosis, which I still consider very recent, but I am newish to this community. This is a great place to express thoughts/ feelings and ask questions.

I can entirely relate to your feelings around the diagnosis and I will admit that it has been a bit of a journey for me. It took a while for me to start telling people, and whilst reactions have been varied, no one has seemed shocked (or maybe I missed it if they were). I have found that by telling people, although I’ve not quite got the hang of how yet, I feel more able to be myself and I don’t worry as much if my mask slips so to speak. All in all it has been quite liberating. I am quite selective on who I tell at the moment though.

I'm also newly diagnosed at age 38 and I also felt shocked, even though I knew I was different my whole life. I also found it difficult to know whether to tell my family or not. The most supportive response I got was from my children aged 17 and 8, it just feels like we all understand eachother more and has brought us closer together. We talk much more openly and often, and they are a great support. My parents immediately dismissed it as I guess they couldn't comprehend that I've had this condition my whole life. The one thing I would say is that receiving the diagnosis has validated myself and I feel like I can be me. My partner also understands me so much better now as we can attribute certain things I do to my autism and we don't fall out as much! I would say take the diagnosis as a blessing that you are finally understood as you and those closest to you will become even closer. 

Wow 2 years is a long time, sorry it's taking so long. Good point about things having changed massively since we were young, and I wholeheartedly agree that we should be commended. It's been so, so hard to live like this, not knowing why you react the way you do. Best wishes to you

Thanks for your reply, I appreciate your advice

As somebody of a similar age who has been waiting 2 years for an assessment I know how you feel. I have already factored in that I am autistic. I have told my closest friends and family but not the world in general. I think things have massively changed since we were young. Two of my neighbours sons have ASD, one severely so, it is part of normal life. To be honest people like us should be commended with getting this far in life without help. Some NT people think that ASD is only something that happened in the last 20 years, its been there forever. Tell people when you feel its right, it is totally up to you.

Rob

I’d say be honest and tell them and hopefully they’ll understand there’s nothing wrong with telling people, I tell people because it makes me feel I can be myself, 

all the best