34 just now diagnosed AS... now what?

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If I lived in a developed country other than the US, I would get diagnosed, even though I'm pretty sure it would be more a matter of where on the spectrum I fell rather than if. But here in the US there are so few available services for anyone not of Medicare, my group insurance, while supposedly "great" wouldn't cover anything related to adult autsim, and a diagnosis would likely prevent me from getting private policy in the equally likely event that I lose my group insurance in the near future (assuming Republicans win in November and take back the few protections put in place with healthcare reform).

If you live in a country with a more logical and ethical approach to healthcare (in other words, not in the U.S.), you might consider yourself lucky that you can even get a dx and also perhaps join group therapy or something like that. Personally, I feel that a dx would at least help me in dealing with my family and some friends. Many people just seem to want to know an "official" reason why somebody behaves so oddly. Without a dx, they just assume that somehow I do it on purpose.

Of course, a dx can have negative consequences if you share it with the wrong people, but with those you really trust, I think it can actually help them understand you more.

I'm 47 and just got diagnosed. I'm doing a lot of research and reading (as is my wife) and am taking some training so I can better deal with NT's. Worst thing you can do is nothing.

Oh I so hear you guys, and I'm coming at it from a totally different angle and I STILL relate. I've known I've had this all my adult life. I think one of the great things about knowing you have this...at any time in life...is that you can arm yourself with knowledge NOW.

When I was a kid in the 80's and was diagnosed, they only focused on fixing my social deficits, and as long as nobody had to see the deficits or deal with them, and adults didn't have to feel uncomfortable around my unnerving silences anymore, they didn't care about much else. Therapy consisted of a lot of books on interpersonal skills like Dale Carnegie and books on body language, and speech classes (like intro to drama, not remedial).
Even through the 90's I didn't bother reading up on autism much after awhile because the theories changed every time I read them. I had a year of asperger's+ptsd therapy in the early 90's. I was the first patient she'd ever met with a high functioning autism (rural areas, lol). There were no self help books on asperger's for a very long time. Zilch. It was an informational wasteland out there for the average person for most of my life. So you haven't been missing much.

Only recently are they starting to get some good solid theories that make sense to me. Especially now that people with vHFA are studying it themselves, and we now have the ability to do brain scans and see the brain in ways like never before. It's easy for people who are recently diagnosed to think this storehouse of valuable information has always been here for your use, if you only knew you had it before now! But it hasn't always been here.

Even having had this all my adult life, I still have trouble with my doctors. My neurologist of 5 years still forgets I have it. I really think it's kind of wishful thinking on his part, like he likes to pretend I don't have it, or that the symptoms are due to something else like they haven't been an issue all my frikken life. I just roll my eyes and sigh and let him think whatever he wants as long as it's harmless.
I don't think my insurance company cares. Autism is a relatively inexpensive thing to cover as my problems go. This is my idea of a support group. I get a headache from speaking for more than a few minutes.

One of the things that's kind of important to know and I had to find out the hard way from the experts after the fact, is if for some reason you have a major trauma, or if you get put on a *bunch* of CNS depressant meds that slow down your cognitive processing or ability to compensate, it can affect your Asperger's or "autistic symptoms" and where you are at on the autism spectrum...but it will not affect your IQ or problem solving abilities, or learned skills.

nice post

I was diagnosed in September last year at 34 (35 now) and am wondering the same thing. The diagnosis has allowed me to forgive myself for some of the mistakes that have haunted me for years, plus I've realised that the constant rejection from other people was not my fault. (When you're constantly being bullied, picked on, teased, ostracised and misinterpreted to the point where people no longer want you around, you do start thinking there's something wrong with you.) I've found an equilibrium and self-confidence (however slight) that I didn't have before. But where do you go from here?

For me, self-acceptance is stage one.

For stage two, I'll quote The Shawshank Redemption: "Get busy living, or get busy dying."

That's kind of how I look at it. Living for me includes the basics of job and home life, but I've also included self-defense class and I've picked back up reading a lot. I want to get it back to the point I was at in high school (high school wasn't bad for me, which is why I don't shun those years). Back then I spent my time happily learning, playing the piano, reading, doing my other things, and living life without worry about trying to be more or less social than what simply came naturally. I was still doing that up until about a year and a half ago when my social world blew up in my face. I'm trying to get back to that point, and a lot of that involves understanding what went wrong and understanding myself. I've learned a lot of things about how other people put up stupid social rules for their social groups, and I've learned how much I don't belong amongst those kinds of rules, despite how much I enjoyed it prior to it blowing up. I was able to avoid them naturally throughout high school and my 20s, but I got caught by the social net in my early 30s. I'm just untangling myself from all that mess now.

I read a book called Brain Tricks, and one of the most important things it mentions is moving on after past harms have happened. This most recent harm decided to take hold a bit and kind of threw me into a minor depression I guess, but I'm climbing my way out of it and trying to get busy living again.

Each person has their own story, their own needs and things that they work on, but ultimately it's the same for everyone: "Get busy living, or get busy dying." I don't recommend the latter.

Last edited by NicoleG on 24 Apr 2012, 6:44 am, edited 1 time in total.

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Last edited by NicoleG on 24 Apr 2012, 6:41 am, edited 1 time in total.

I learned about Asperger's Syndrome about 3 years ago. I have not been diagnosed, but everything I have read has helped me answer questions about who I am and why I have had social and environmental difficulties my whole life. I am very independent, but it has been a struggle. I am now self-employed and work from home, which has been an enormous relief to me. I was never able to deal with office environments without becoming mentally drained and withdrawing completely after hours.

It might have been helpful to know about Asperger's Syndrome earlier in my life, but I think that I have benefitted from the struggle, so I can't say that early diagnosis is necessary.

Some good insights there, NicoleG. I knew there was a reason I like The Shawshank Redemption.

I have begun to steer my life in the direction I want it to go. I quit a job that was sucking the life out of me, moved out of the city and returned to uni to study one of my special interests. Overall it's been an excellent decision, but there have been a few challenges, a couple of which I'm facing now. Nonetheless, I'm happier than I've been for as long as I can remember. A close friend remarked recently that he's happy to hear me so positive.

I think my confusion lies more with the practical aspects of how to interact with the world. Let's take jobs as an example. In an academic setting I can potter along, working through my study program and doing as well as I can. But eventually I'm going to have to find a job. That means I need to network - beginning well in advance - and eventually start a job hunt. That's where social skills that I don't have would come in handy. Like it or not, in most cases social skills are more important than ability, even if the other person is making those judgements at a subconscious level.

What have people done to smooth your way through the world? Not just when it comes to job interviews, but in general?

My husband has recently self-diagnosed with AS (soon to have appt for official assessment) and we are both at a very early stage of trying to come to terms with the implications of his AS. He is 56, and alternately feels immense relief - because a lifetime of Not Fitting In is suddenly starting to make sense - and great anxiety because he, too, is wondering: where to from here?

He recently went to visit his father in his home town, where he grew up, and when he mentioned to a couple of old family friends that he believes he is on the AS spectrum, they both said things along the lines of: "I always thought you were weird/strange/different as a kid." He seemed both hurt and baffled by this, which I was a little surprised by. I can understand being called "weird" is hurtful, but I didn't really understand why his response to their childhood recollections was essentially one of "I don't know what it all means", which he said a few times when recounting these conversations to me.

Is it that he's at such an early stage of newfound knowledge and understanding that he is having difficulty processing it? I hope this is not a silly or naive question, but it's almost as if he sometimes forgets he has had this new and hugely significant realisation. Is this possible? I've been doing a lot of reading re AS, and a lot of lurking in different forums, but I'm kind of drowning in an information overload, and I read a lot of confusing/contradictory things, so it'll take me a while to get my head around all this.

My whole life had passed with me feeling like i was on the outside of society looking in. I had seen some slight misrepresentations of asperger's on TV and thought "some of that looks like me, but the rest... nooo". Then my boss of 8 years asked my coworker if i was autistic. Once this got back to me, i was shocked. How many people in my life had felt this way but been too "polite" to tell me?!

So i started to delicately trawl through my friends and family asking questions about my behaviour, and i learned about these jarring aspects i had no idea about. The whole time, my entire life, noone had said a damned thing to me about it! It was incredibly off-putting to realise there's such a disconnect between my memories of interaction with these people and their view (or reality, but that's subjective).

I believe that's what your husband is going through.

Ah, yes! Thank you, Cubits - that does make sense.

I imagine the best thing about actually having an official diagnosis is just for one's own peace of mind. You are still the same person you were before and presumably you have already researched AS and examined yourself thoroughly so it doesn't change anything really. I would like to know where exactly I come on the spectrum, too. It's strange but after all my research and self-examination I'd be really shocked to find I wasn't on the autistic spectrum because that would make no sense somehow. So an official diagnosis would certainly be useful just to get that theoretical possibility out of the way. Be glad that you are no longer unofficially diagnosed .

Having understanding to me is like finally being given the template to go by while trying to put together a huge, seemingly insurmountable puzzle. All the pieces start to make sense. Without that understanding, change was nigh impossible. People could tell me what I was doing wrong, but I still don't know how to grow in the right directions in order to try and do right. Having the template brings understanding, and with understanding, I can now see what I was missing in order to enact that growth.

I could not agree more.

Excellent to hear! I wish I had the financial backing to quit my job right now. I would much prefer doing the work that my mom and I set up a company for and delving a lot more into programming on the side, but right now there's no clients, so nothing to support a move like quitting my current job. That whole "sucking the life out of me" with my current day job makes wanting to do anything besides become a vegetable when I get home pretty difficult.