Newly diagnosed- now what?

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I was diagnosed with Aspergers this week. I'm 21 years old and have been waiting nearly a year for my assessment and now I'm left in the position of kind of thinking, now what?

It's weird but the day I was told I didn't want to tell anyone or talk about it at all, even though I had kind of been dreading they would tell me no and I'd be left with the horrible feeling of, I guess I was just being awkward.

But the thing is, I'm 21. I feel like it's hard to kind of start again, if you will. I've recently discovered how much I love timetabling, I have always hated school holidays because I got nothing done and was always bored but have recently discovered if I timetable the night before I can get loads done and have a really good day. But how do I suddenly go from adapting to everyone else to being like 'no, my bed time is this time and if I don't get up at this time I will get nothing done', or planning out my meals in advance and just being like 'it's this day, I'm having this', when other people haven't really encountered me like this before.

I have always adapted to everyone else, because I felt it was very important not to cause trouble, and now, in a weird way, I feel like I have permission to be a little more assertive about these things, to not feel quite so bad about myself when my Mum gets annoyed because I misunderstood some instructions (though she has been trying a lot harder to be careful how she phrases things). It's the transition of, how do I tell a lot of people that already know me that actually, yes before I didn't say anything when my schedule was messed up or when I didn't want to do something because it made me feel very uncomfortable, but actually doing that was very stressful for me, so now I am going to cause a bit more of a fuss and maybe make you adapt to me a little more.

I don't want to be suddenly horrible to people, but for so long I have been such a pushover because I felt it was the good thing to do, to say nothing and get on with it, and now I feel this diagnosis gives me kind of a right to not be such of a pushover because I can say, I am not just causing trouble or being awkward, I genuinely have trouble doing this please help me. The question is, how?

How do I go about changing my life? And how do I tell the people who already thought they knew me?

To be honest, I'm struggling with this issue myself. I don't know how to enfold the reality of my diagnosis, the reality of the confirmation that things I have difficulty with are real and not just me not trying hard enough or something. I'm still having problems learning how to "self advocate" -- to be more assertive about some needs and requests I have to make in order to help other people help me do my best.

It's a hard one.

I can only say, don't be too quick to disclose -- I know that's slightly a different issue than the one you raise, but part of dealing with the new knowledge about yourself is that not everyone knows enough about this neurology for the news of it to be helpful to them or to you.

Tony Attwood talks about telling someone about a relevant trait instead of disclosing the condition.

For example: "I'm one of those people who have sensitivity to noise and I think better when it's a bit quieter, so, I wonder if I could turn down that radio, or even off for a while, just while I do this task?"

Instead of saying "I have ASD/Aspergers/autism, I need that radio off or I can't think."

This is a case of the blind leading the blind, as even though I know the words to say, I can't seem to step up and say these things for myself in my own life! But that's the theory of what to say.

Good luck; it is a time of transition and most transitions can be challenging.

Don't feel pressured into changing; you are still the same person you were before afterall.

At your age, it is normal for people to change a bit, so if you ease into your own schedule (like, start by planning 1 day of the week for a month, then plan 2...), noone should mind too much, as long as you don't interfere with them too much.
The ones that do mind, well, perhaps those weren't true friends afterall

Yes you have permission to be yourself and not to do things that are harmful to yourself even though they are atypical. You also have permission to take a bit of time to figure out the real you that you have been suppressing.


It will probably be an emotional rollercoaster for awhile but this is common.

You won't be horrible to people because you don't want to.

Asserting your need for conditions that allow you to be at your best is not synonymous with being horrible to other people.

I think for the people who are close to you, you have to be straight with them-tell them what you need and let them know when they are doing something that isn't going to work for you. Then you can work out compromises.

For other people, you can say, "I'm the kind of person who needs X" or "I'm the kind of person who doesn't do well in conditions Y" and then be friendly but firm about that. No one is going to think you are a horrible person for being honest.

Mean and nice are not Autistic traits they are personality ones. Poor theory of mind leading people to be rude or seeming to be rude is a stigma. Some autistics come off as rude some don't. Same with self advocates of all neurologies.

I'm thinking the OP doesn't have that confusion, but is just so used to being made to feel at fault for just being that any attempt at claiming a need for accommodation seems like it could be "becoming a horrible person."

Thanks, yeah. I was more trying to say I'm quite a submissive person. I've always taken the lead from others in a lot of situations because I've not always been great at reading them. And at home, I have a younger brother with severe learning difficulties so I've always felt it was good to cause as little fuss as possible, so now I struggle even to say 'no' to people when they ask me things. So telling people actually yeah it does matter when certain things happen/don't happen is very hard for me.

Thank you everyone who is replying though, it feels very friendly.

Well, as has been discussed in these forums before, the frustrating truth is, often the only way an autistic person can get neurotypical people to listen to us when we have an issue, is to make a scene. They don't have our sensory problems, so what is to us a huge big deal is to them a meaningless trifle.

You shouldn't have to bite your tongue constantly about the problems your handicaps cause you - its unhealthy - and its the major reason why so many of us suffer from anxiety disorders and depression. Its very easy to become beaten down over time, by people who ignore you when you tell them you can't do something, or that this or that is making you extremely uncomfortable. After a while, you just stop trying to get it across to them anymore and do whatever you have to do to avoid all that verbal abuse designed to make you feel inferior: "If you'd just try harder," "you're just shy, put yourself out there," "why can't you just be like everybody else" and the ever-popular "What the F**K is WRONG with you?"

I'm having an issue like that right now, with noisy neighbors and an ineffectual landlord, who cannot understand that my ceiling thumping like a hip-hop drum in the middle of the night is not just annoying, it's PHYSICALLY PAINFUL to my entire nervous system. Personally, I'd rather be waterboarded, it can't be any worse. How do you make people understand that something is affecting you in the same way as being Tasered would affect them? They have no experiential frame of reference, because nothing remotely like that has ever happened to them. So how do you make them understand, without grabbing them by the lapels and screaming in their face "If this doesn't stop, I'm going to go F**KING INSANE!?"

Sometimes you just have to be horrible, or be a doormat.

I'm in the same boat, actually. The only thing that I will add in addition to what everyone else is saying (take your time to learn how to be yourself) is this: get to know thyself. I'm at a point where I am aware of my weaknesses, but I'm learning about my own strengths. From that, I would recommend to observe yourself, and observe what you do well and what your passions are. If people like Satoshi Tajiri and Temple Grandin have been successful and happy in life in their own ways, you can find your path to success and happiness.

I was diagnosed 1½ year ago and I´m still in that process. I have insight about my weak sides, but it is harder to concentrate on strengths, - probably partly because I am unimployed and as such subjected to the limiting views of the social system. My former strengths seem to have disappeared in incertainty, but with some focus, they should be revivable.