i'm looking for help

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i have recently self diagnosed and am looking for something but i have no idea where to start. it's been a battle, my son was diagnosed pdd-nos, and the school psychologist removed the label. it's been a struggle, and in researching and educating myself i became certain in the need to pursue his diagnosis. but then, i researched for myself. not even purposely, but on a whim. now i'm so overwhelmed. it seems people doubt their self diagnoses. i've made an appointment but the waiting is just creating a time for me to do more research, supporting the asd diagnosis every time something new is read or seen. now, doubt is getting to me as well. anything helps. i apologize in advance, i have no idea how to do this or how this forum works this is my first time

You need someone qualified, experienced with the autistic spectrum, and above all objective.
Good luck, because it can be difficult.

From what I've seen on autistic forums, here and on others, doubt is pretty normal. Actually, I think questioning it even while you're sure is almost a requirement for being on the spectrum (my theory is we see too many details and multiple facets of situations -- so we tend to have difficulty constructing an overarching narrative...like putting a label on ourselves).

Anyway, a few things that calmed me down:

-- searching for ASD videos on YouTube to compare how they act to how I act
-- talking to close friends and family to see what they think
-- reading every book I could get my hands on (I like The Journal of Best Practices: http://www.amazon.com/The-Journal-Best-Practices-Marriage/dp/1439189749)
-- keeping a journal handy to write down my thoughts, make lists, etc. to work out my ASD traits or where I seemed different from the usual lists

Also this blog is good and the sidebar links to lots of other blogs, so you can read how other ASD folks think and see if it matches up with your style: http://musingsofanaspie.com/

Diagnosis is good, of course, but it means nothing if *you* aren't convinced, too.

my immediate family has come to the unanimous decision that my mother, brother, grandfather, uncle, myself, and my son have Asperger's. in very very different ways. but. i can't help but still question. my boyfriend of six years, who i am no longer with didn't agree because of the way i was in public situations. but he also said it would make sense if i did. who understands that i have no idea. i've also let go the things i do to feel normal. so like i'm in the dark, constantly. i have to deal with bright, loud, shitness in the workplace, so i have a very calm home environment. i've just started to allow myself to do exactly what is it i want. and yet, i can't help but second guess it even still. blerg

I'm right there with you on these things. Letting go of trying to be someone you're not is a process. Have you read this essay? It's one I go to a lot when I'm trying to make sense of what I'm going through:

Help! I seem to be getting more autistic!
http://archive.autistics.org/library/more-autistic.html

I asked a couple people who know me well before I pursued a diagnosis, including DH. They all thought I'm on the spectrum, so I went for it. If your family all thought you are, they're probably right. Don't worry too much you'll find out soon enough.

i appreciate all the comments. my score was 38. BUT, somehow i feel like that isn't real. i go back and forth from laughing and crying at how far beyond what i thought this situation is. and it's something i see popping up everywhere in my life. my whole life is wrong. and i'm overwhelmed at all the changes i have to make. i know that's where my focus should be, and i appreciate and love you all for responding. i feel very alone. something i can't help do is just be overly anxious and diarrhea constantly over the reality around me. i just want to close my eyes and shake my head no until i'm finally waking up from dreaming/sleeping, to a life that is my own. i don't feel that i know myself. i don't know if what i do is genuine as i do it. it's so much. thank you all really

WOW, I have written words like that over and over for six months now. You are definitely not alone in these feelings. This has been something I have really struggled with.

Here is what I have been doing, which is helping. Hopefully something here will spark an idea:

1) Observed when the anxiety went up and down. I didn't know what my triggers were and had to figure them out. (Loud noises, talking to someone for more than 15 minutes, sitting in my office at work with the door open, etc.) This has taken months and I'm still working on it, but it is interesting to watch. I didn't even know how to identify "anxiety" before, because it was just my natural state, all the time. It still is, but now I can see a rise and fall in intensity.

2) I read about strategies and tried to adopt them at different anxiety/depression levels to see what helped. Temple Grandin's books are good for this as are Tony Atwood's. I'm still doing this, but I'm working on "kits" of items to carry around to help.

Here are some strategies people have recommended:

-- weighted vests (or blankets, or lap blankets) to reduce anxiety. (Temple Grandin writes on this with her "squeeze machine" -- a more extreme version, but something to consider.)

-- fidget tools / stimming items, depending on what works for you (I did searches here to see what people like then ordered what looked interesting from Amazon to see what works for me. The website Stimtastic http://www.stimtastic.co/ has a selection, too. Left to my own devices I'll pick my skin, so I'm trying to replace that habit. I also bought some beautiful religious beads to use to help me focus, even though I'm not religious, just because I like the shape of the stones. I also keep a ukulele around, because the sound and the feeling of the strings calms me.)

-- keeping a journal around constantly to vent in and work things out (keeping lists calms me, even if I never read them again. Weirdly, so far Zentangling (http://tanglepatterns.com/zentangles/what-is-a-zentangle) has been the best at calming anxiety and getting me focused. Who would have thought? You can get all of it free online, too.)

3) I also have written down in my daily notebook what I can do when I'm freaked out, because I forget what to do. These will not help in the moment (I don't run to my notebook when I'm in a high anxiety state!), but if I read them a lot, and they are simple, then I can hopefully remember them better (short social scripts for difficult situations, remembering to breathe and count when something bad happens, etc.)

I also had problems focusing, especially when anxious. I have trouble seeing myself as a whole -- I just see the details or facets of myself -- so I get easily confused when I try to fit myself into a category. I question and wonder about everything over and over. So, knowing that (which I only figured out after reading a lot of books on ASD and frontal lobe issues), I have to accept that I think differently, more in a mosaic style. Writing in journals, by taking on a small piece of myself at a time, helps understand the bigger picture. I can focus on a little thing and later I can read back at what I said then and add it to what I said another time, and then I get a sense of a pattern. It takes time, though. It's hard to stay focused, so it's definitely just something I do when I have the energy and inclination, which is sporadically. But over months it can help.

I also really REALLY need to talk a lot out loud. I work out problems alone in my car.

Finally, I had a LOT of depression. It was hard to understand that, because I had had it so long. I had to observe it like the anxiety, to see what caused it and when it went away. Over time, I have learned more about the patterns. It's a form of educating myself about myself and it gives me more control over what situations I am willing to put myself into, and what I will need time to recover from. I really had no idea at all before. (And some of it was food related, weirdly. Keeping a food diary to identify problems may help.)

Anyway, hopefully something here will give you hope that there is a way out of this. I like developing plans, but sometimes I need to read about other people's experiences to give me ideas.

And if you're really feeling like it's not real...take every test you can find online. Eventually it will sink in. I just retook one after 6 months yesterday and it had even gone *up* slightly. Yes, this is real. I do need to hear that a lot, though. I feel very "asperger" but not very "autistic" and that's more of a label thing than a reality thing.

i laughed and sighed while reading this response.
you are me, seriously. i wish i could hug you because i fully, actually, not figuratively, know what you mean. i write in my journal, which started as random list making, to literally writing out my thoughts. i find it helps to talk aloud as i write, and i often talk during a hot, HOT, shower, with music playing, and no lights other than my laptop.
i am slowly finding what makes me anxious as well. your tips are great. i've reached a place where i know, deeply, it's either suicide or changing to give my son the best possible existence. because why wouldn't i do that. but this process has uncovered so much. memories about pounding myself, back first, against a wall, opening my mouth, and just letting out sounds as i hit. not too hard. but hard, and it soothes to a degree i can't even fully explain in words. and i stopped, at some point i knew, "nope, this is weird, hide, hide it all".
i think the fidget tool suggestion has been the best so far! i bite my nails, tear things up, and generally mess up my body in small ways when i have no focus. i am glad to know you exist. i hope you feel me as you read this. i truly have such a sense of relief after reading your experience.
today i felt that i couldn't handle the idea of sending or leaving my son in a world that is the way this one is. i can't understand how this beautiful, in my opinion, way of being can be so crushed by a majority of constant deception, predatory behavior, and overall shittiness. but you're out there. and i know in researching i will be able to find a life that suites me.
have you found it necessary to make big changes in your life? i am contemplating home schooling very seriously, or something that will completely change our lives so that i can live with him, fully, meals, activities, and generally be able to share our time with one another. rather than in a car in traffic. or in a classroom that feels callous and cold. or in an office where i'm so overwhelmed my insides feel like i'm shivering, because i can FEEL how different i am, and how people notice. whether it's a patronizing tone stemming from pity, or a general "why's she like that?". i want none of it.

sorry for the rant. thank you.

Well, I don't have any answers, but I do have a lot of the same questions. I think this is all a process, and I feel like I need a rail to hold while I'm walking down stairs in the dark. If that makes any sense.

I definitely understand about the weird childhood memories. Thinking about all this now, as an adult, has been emotional and somewhat isolating. I'm much more validated in what I experienced then, but I can't explain it to the people around me who aren't on the spectrum. I do feel a lot closer to my dogs, though -- the more I learn about how autistic people think, the more I feel like an animal who looks like a human (not that humans aren't also animals, but you know what I mean).

For me, understanding and acceptance have been the hardest things to learn, and the most useful skill has been to take each thing at a time, and not to try to do or think about too much. I've let a lot go. I used to automatically try to be someone else, and just being myself is hard.

Please check in from time to time. I get anxious when I make friends, but I like to know other people are out there, too. And please let me know if you want more info on the tools, books, etc. that I've been trying out.