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How important is getting diagnosed?


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Hi all. Hope you can offer some advice and opinions.

I have quite a few neurological issues; Tourette's Syndrome, ADHD, OCD, are ones that are obvious. However, I have many symptoms that don't necessarily fit into those categories. Up until a couple of years ago all I knew about autism was classic autistic dhild you see on TV, etc. Then I found out about Asperberger's, but at the time, when I read the symptoms, I didn't seem to fit.

I have since learned about high-level functioning autism, the spectrum, and some form that I feel I fit into quite well. I seem to have some of the symptoms many of you talk about. I also took an on-line test, and scored 20 points above what is the norm for someone with autism. I realize that it could be for other reasons, but it's enough with everything else, to make me wonder.

I have been expressing to my mental health workers (I have little confidence in them but have little choice) about this, and have been wanting to looking into getting a specific diagnosis, one way or the other. I am coming up against a lot of resistance to this. I keep getting comments like the diagnosis doesn't matter, just treat the symptoms, I'm sure you all know them.

I disagree. From what I have seen, some of my symptoms, if they are related to autism, would be treated in different ways than if they were related to some of the my neurological or psychologiclal issues. I also wonder if having the diagnosis might offer more in the way of resources to get the help I need.

I'd like to know what you all feel about the importance of getting diagnoses (or not -- at least I'd know)

Also, how to go about it, where to find someone competent -- I can't get through or get any call backs from my local autism society -- isn't that sad? Everything in this area is like that.

Even if you could share anything that might shed more light on whether I might even be high-level functioning autistic or not. Anything you want to share would be very appreciated.

Thank you!

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for my best friend who has classic asperger's, his DX was the difference between him getting SSDI and not. if you're ever in the position where you need SSDI, you need that DX to really drive home your claim. you never know when you'll need it. people go around and are fine and teh next day are crumbled. i'm not autistic, but i've been best friends wtih my autistic friend for 10 years, so i know how he is.

i'd go to another group of clinicians and get them to evaluate you. sometimes there is bias with the doctors you already see. my doctors, for example, were really reluctant to go with my ADD until i had them review all their clinical notes from the years, and test me on paper, and give me an extra long session to watch me for it. i'm on adderall now, and it has made a world of difference.

i'm always about a proper DX. if all your other disorders fit under the umbrella of autism, it makes sense to DX autism and keep it at that. 1 out of about 100 people has a form of autism. it isn't that uncommon. about 2 from 100 has bipolar disorder (me). if i hadn't been DXed, i'd be ruining my life, if it hadn't already been ruined.

a DX can mean the difference between services and education for autistic people and not. if you haven't gone to college or want to go on to grad school, you can get scholarships based on being autistic. my best friend went to college pretty much for free because he has autism. i'd say it is worth going after! ;)

best of luck,

loon

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I'm aleady on SSDI because I'm so messed up from my other stuff. I'm not sure where to go to see someone about a diagnosis.

Would you mind clarifying something you said regarding your friend who one day is fine, and one day is crumbled? Notsure what that means, or if that fits me. Just curious.

I've had a hell of a time trying to get some of these idiot mental health workers to believe I can't do certain things simply because in some other ways I'm very intelligent. I had hoped a better diagnosis in many areas would clear that up.

I wish my area wasn't as bad as it is with support services. I'd love to talk to some people here with autism and see what's available, but they are just not responsive. It's a shame.

Anywy, thank you and if anyone else has any thoughts, please share!

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Hi all. Hope you can offer some advice and opinions.

I have quite a few neurological issues; Tourette's Syndrome, ADHD, OCD, are ones that are obvious. However, I have many symptoms that don't necessarily fit into those categories. Up until a couple of years ago all I knew about autism was classic autistic dhild you see on TV, etc. Then I found out about Asperberger's, but at the time, when I read the symptoms, I didn't seem to fit.

I have since learned about high-level functioning autism, the spectrum, and some form that I feel I fit into quite well. I seem to have some of the symptoms many of you talk about. I also took an on-line test, and scored 20 points above what is the norm for someone with autism. I realize that it could be for other reasons, but it's enough with everything else, to make me wonder.

I have been expressing to my mental health workers (I have little confidence in them but have little choice) about this, and have been wanting to looking into getting a specific diagnosis, one way or the other. I am coming up against a lot of resistance to this. I keep getting comments like the diagnosis doesn't matter, just treat the symptoms, I'm sure you all know them.

I disagree. From what I have seen, some of my symptoms, if they are related to autism, would be treated in different ways than if they were related to some of the my neurological or psychologiclal issues. I also wonder if having the diagnosis might offer more in the way of resources to get the help I need.

Well. Autism itself is untreatable and many of us don't particularly care if it's ever treated. Where it's important is when it comes to making sense of your personal narrative, understanding why you fealt how you did in particular situations in the past, that kind of thing. For example, I've heard that a substantial number of aspies who make it through the public school system undiagnosed have some PTSD before everything is said and done. If you didn't know that that's not uncommon you might know that you have PTSDish symptoms but find the idea of school as a cause absurd and go looking for other events as a cause. As a result, core issues never get dealt with. Do you need a formal diagnosis for that? I don't know.

What you said about services is most important if you plan on going back to school or work. A lot has been written about job placement and training for people on the spectrum. A proper diagnoses is important in terms of offering education and workplace accommodations for sure.

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Well. Autism itself is untreatable and many of us don't particularly care if it's ever treated. Where it's important is when it comes to making sense of your personal narrative, understanding why you fealt how you did in particular situations in the past, that kind of thing. For example, I've heard that a substantial number of aspies who make it through the public school system undiagnosed have some PTSD before everything is said and done. If you didn't know that that's not uncommon you might know that you have PTSDish symptoms but find the idea of school as a cause absurd and go looking for other events as a cause. As a result, core issues never get dealt with. Do you need a formal diagnosis for that? I don't know.

What you said about services is most important if you plan on going back to school or work. A lot has been written about job placement and training for people on the spectrum. A proper diagnoses is important in terms of offering education and workplace accommodations for sure.

Thanks for your answer. I'm learning something from each person here.

When I used the phrase treatable, I realize I did't express really what I was thinking. What I meant by that is the fact I know that many symptoms of autism are not treatable, and one needs instead to learn how to live with them, compensate, etc. The problem has been that in assuming my symptoms came from other issues, and an attempt to simply treat the symptoms, I've been subjected to all sorts of meds and therapeutic approaches that were never successful. That's made me feel like crap, and frustrated those who were giving them to me. At least I'd know what was what, and they would stop trying to ply me with meds that made me sick and would never do anything to help. Instead it would give me and hopefully them the clarity to treat what can be treated, and to compensate in other ways for what cannot.

For example, if my inability to keep my apartment organized is from ADD, then the meds and skills training should help. But it never does. If it really was in a large part caused by autism, then a better approach would be some help a few times a month to keep me reasonably on track, at least from what I've read that is a viable and helpful strategy.

And I could stop agonizing over what isn't working and have the freedom and peace of mind to work on what can help.

That's probably my biggest reason for wanting the diagnosis either way. Probably the word "approach" would have been better than "treatment."

I'm not sure I uinderstand what you are saying about PTSD. If you could clarify that, I would appreciate it. PTSD is one of my diagnoses, but it's assumed to stem (and I agree with this at this time) from the fact I am an abuse and trauma survivor both from my childhood, and, I hate to say it, but from some of the abuse I've gotten from the mental health system over the past few years.

My brain is a veritable kalaidescope of goodies. LOL

It's just that I'm 53 years old, I'm completely alone -- no, friends, no family -- and nothing is changing, in fact it's getting worse. I need to find something that will make sense and make my life a little better, because right now, it sucks.

quote box code tweak - Null

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High school is not kind to those who do not fit in socially. Not understanding non-verbal cues and social relationships is a keystone of autism. So being autistic or aspie often means you are picked on, abused, degraded by your fellow students, not to mention asshole teachers and clueless administrators. It's like having a bully-magnet taped to your chest.

Public school was complete hell for me from about middle school on. I was way too tall and younger than most of my classmates. I saw what was done to other kids with differences. I even got suspened twice for beating the shit out of bullies who were picking on weaker, less socially able kids. I got in to a major argument with a science teacher because a bully broke a microscope on one of the "weird*" kids. The teacher stood up in the front of the class and started calling the "weird kid" irresponsible, saying how much money he would have to pay for it, etc... I spoke up and told him that is wasn't Ben who broke the microscope, but the class bully. But because this douchebag did not want to confront the difficult student, he basically called me a liar. I had to spend the rest of the class sitting in "the quiet area". Shit like this happened all the damn time.

*Looking back, I would bet he was aspie. Off the chart smart, nerdy, no social skills, physically uncoordinated, and he was a brilliant writer but his handwriting was so bad you couldn't read it. I think both his parents were professors of some sort.

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