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my experience as an asperger sufferer


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I'm 18 and I learned about autism a year or so ago through research on the internet. As I read through all the information I realized that it all sounded just like me, so I self-diagnosed myself as being autistic. I have not sought "professional" diagnosis, because I do not see what good that would do. Neurotypicals and the rest of the world could care less about autism anyways. I have learned a little bit so far but I am still really confused about how the world works. Group socialization with neurotypicals is virtually impossible for me. The rapid, fast paced social interactions of neurotypicals is way too fast for me to understand so  I am left as just an observer, rather than an active participant. Being with just 1 neurotypical at a time is a little better because I have the full attention of that person. But usually I am simply left alone with no social interactions, spending the bulk of my time doing solitary activities, or serious research and study in topics that interest me. One thing that I have learned, is that in my attempts to give people compliments or try to be helpful or provide a service of some kind, that these actions will usually have the opposite effect from which I intend. For example, in my post in which I suggested that people try 5-htp, my intention was to be helpful, however I doubt anyone took me seriously and I probably did not do anyone any good. Because of these mis-communications inherent with autism, it is difficult for me to see how I might be able to contribute anything to the world. So this leaves me with with the options of self-autonomy, crime, luck, or the loving kindness of understanding neurotypicals as possible strategies to get through life. But without these social communication skills and empathy, how is one to survive and thrive, without becoming a miserable isolated person, confused and mad at the world?

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Dear Crazykid,

I have a 12 y.o. (whoops, now 13 y.o.) asperger's son who has many of the same problems you do.  First of all, you might want to contact someone who can do a "real" diagnosis.  Although you're a little older, you might want to contact a developmental pediatrician who will do a thorough study to determine if you are indeed you are on the autism spectrum.  The correct diagnosis is important in terms of any meds that might be useful for you (my son is not on any so it's not always a given) and any school adaptations that might be necessary if you are going onto post HS education.  If you are beyond his/her age range for treatment, the dr. might be able to refer you to a psych nerologist (sp?).  Therapy might also be indicated but i'm not talking about "talking about your feelings therapy" if that turns you off.  (We took ds to a child therapist for over a year until he discharged us, telling us we were wasting out money because a) ds couldn't talk to him...too shy and B)  ds didn't think there was anything wrong with himself.  It would be more of a type of behavioral and socialization therapy.  I know the therapy probably sounds awful, but a lot of aspies have what's refered to as "face blindness."  They speak bluntly but don't realize that they might be hurting an "NTs" feelings by speaking TOO bluntly.  (Even tho I know what's going on w/my son and that he's not intentionally being mean, I still get my feelings hurt  when he says stuff like "Hey, looks like you're getting fat.  ;)   ) Sometimes he comes off as a real jerk and can make certain situations difficult.  (And, truth to tell, sometimes he can be a real jerk, just like ANY other person...it's a very fine line between the two.)  Socialization classes have helped a little; constant reinforcement by his dad & I too.  I can't tell you how many times I have to say "say thank you" and prod him about other social niceities.  It's an ongoing battle, that's for sure.    Now that being said, don't be discouraged.  He acts MUCH better than he used to, tho contact with people he doesn't know really well is still a problem.  Since you're so much older than he is, maybe instead of socialization classes, you can buy the book that is the basis for these classes...they're by Carol Gray and I believe the title is "Social Stories."  They may be a little elementary for you, but who knows, maybe they'll teach you something you never knew before.

Another good resource I've found is an internet site called O.A.S.I.S. run by Barb Kirby out of Univ. of Delaware (I think if you do a search on one of these key words you should be able to find it easily).  There's a ton of info on there not only for parents of school aged children (I.E.P.s, etc) but there are adult and teen aspie boards. 

Please don't think that no one cares...like I said about my son, sometimes with his lack of eye contact and lack of verbal skills, he just appears to be a sullen teenager.  But what a difference he is when he's with people he knows well.  In fact, his teacher told me he's one of the most popular kids in his class, even tho he doesn't talk much.  The problem is that no one knows your 'back story' so that makes things difficult for you.  I make sure that when ds is entering a new situation (Sunday school, sports teams, etc.) I tell the coaches & teachers that he's extremely shy and hard to communicate with.  That way, they take a little extra time with him and learn not to think of him as a 'jerky kid."  I don't think it's necessary to announce to everyone we meet that he has Asperger's; I think the explanation of "pathologically shy" is met with more sympathy and understanding without 'spreading our business' all around town. 

Please check out the OASIS board and let me know what you think.

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It's not that NTs don't care... they just don't understand. That's my NT perspective, anyway.

I think an official diagnosis has value - especially at your age. Having an official diagnosis can open a lot of doors for you - whether you continue your education or enter the world of work.

In any case, you've found a really good place to learn more. Welcome!

Sunshine

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first off, i don't beleive that peopel with asperger's lack empathy.  problems with social cues? sure, but lacking empathy... i don't see that. 

ok on to the rest of your post...

I'm 18 and I learned about autism a year or so ago through research on the internet. As I read through all the information I realized that it all sounded just like me, so I self-diagnosed myself as being autistic. I have not sought "professional" diagnosis, because I do not see what good that would do. Neurotypicals and the rest of the world could care less about autism anyways. I have learned a little bit so far but I am still really confused about how the world works. Group socialization with neurotypicals is virtually impossible for me. The rapid, fast paced social interactions of neurotypicals is way too fast for me to understand so  I am left as just an observer, rather than an active participant. Being with just 1 neurotypical at a time is a little better because I have the full attention of that person. But usually I am simply left alone with no social interactions, spending the bulk of my time doing solitary activities, or serious research and study in topics that interest me. One thing that I have learned, is that in my attempts to give people compliments or try to be helpful or provide a service of some kind, that these actions will usually have the opposite effect from which I intend. For example, in my post in which I suggested that people try 5-htp, my intention was to be helpful, however I doubt anyone took me seriously and I probably did not do anyone any good. Because of these mis-communications inherent with autism, it is difficult for me to see how I might be able to contribute anything to the world. So this leaves me with with the options of self-autonomy, crime, luck, or the loving kindness of understanding neurotypicals as possible strategies to get through life. But without these social communication skills and empathy, how is one to survive and thrive, without becoming a miserable isolated person, confused and mad at the world?

i took your suggestion about 5-htp seriously.  hell, i take tryptophan.  i'm interested in 5-htp because it's available without a prescription, and i found your post of great interest because it's left me inclined to continue to take the tryptophan i get from my doc as i know it's high quality, made by a pharmacist, and has quality and dosage control.

don't sell yourself or neurotypicals short.  i'm an nt married to a man with aspergers.  sometimes we have miscommunications, but generally we are very happy together.  you are by no means doomed to be miserable and isolated.

not only autistics feel cut off and isolated from the world.  the world can be a cold and confusing place.  this is probably why i have social anxiety.  i know that as an NT i can not fully relate to your experience, but i do understand what it feels like to be alone and wonder if it is possible to interact with other people on a meaningful level.  on bad days i think no, and i get misanthropic.  but deep dow, i know there are people out there, both NT and on the spectrum, who are worth while.  who will take the time to make sure that the paths of communication are as open and clear as possible.  people who are nice to spend time with.

as for seeking out a professional diagnosis... my husband was not officialy dx'd until he was in his mid 20's.  and while he had a really hard time adjusting to the diagnosis, in the end it has helped him a lot to have it.  for one, it led him to seek out more information on aspergers, which led to a greater sense of self understanding.  and secondly, he has been working with the specalist who diagnosed him on skills to make coping with the wold easier.  (not how to fake being NT skills, skills on how to not let things overwhelm him, how to minimize his anxiety during social interaction, and his doctor has helped him a lot with his sensory integration issues.)

there are doctors out there who specalize in helping people with aspergers deal with the comorbid conditions that so often come with aspergers (depression, ptsd, etc) and sensory issues so that having aspergers doesn't have to be somethig that lowers quality of life.  (and, i promise, i'm not talking about learning how to fake NT, i'm talking about how to learn to be happier as you are.)

anyway, that's just my 2 cents on the official diagnosis thing.

take care,

penny

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  • 3 weeks later...

I know all-too-real what you're talking about, man.  Especially being near your age (22), an important time for socialization and networking, and getting laid... errr, I mean, finding a potential LTR and/or spouse.  I was too essentially a self-diagnosis, though both of my tdocs and both of my pdocs as well agreed I fit the criteria to a tee.  As you've said, though, 'professional' diagnosis means nothing, as very few people see success in pharmacological treatment of Asperger's; the main aim is just to change, through therapy, the maladaptive behaviors we all have.

Like you, I can't stand large group socializations... if there's any more than 5 or 6 in a group, I suddenly recess into my own little quiet corner.  Especially if anything negative is said about me (even as a joke).  Example: when about 20 of us at a co-ed fraternity initiation dinner were gathered, I insulted a girl whom I'd considered my best friend (and she reciprocates as well).  I warned her that she and her boyfriend should never have children, as the kids would inevitably freaks.  (And by God, most people there would have agreed).  She promptly replied, full well knowing my Aspie troubles in finding a potential mate (not to mention our college was 75% male!!!), "well, at least I can find someone to date, unlike you!".  I sobbed right then and there.  I cry easily for a guy - at least sob, if that.  Didn't talk the rest of dinner, even though she explicitly admitted to me that her remark was in bad taste and that she was very sorry.  Her and her b/f had ridden with me in my car, 20 miles from campus to the restaurant.  I was damn tempted to take off right then and there, my food ordered but not delivered, leaving them to find alternative means of transportation as all cars had been full to begin with.  (The Cleveland RTA is not recommended for anybody, really.)  And mind you, not as revenge for the remark, but more because I was uncomfortable being around them in general.  Didn't help either that several months before, she'd directly rejected me for this guy.

However, I like interaction in small groups... a lot.  Especially if the other party(ies) are talkative, Aspie or NT.  And moreso when we have some common interests.  That's very, very rewarding.  I encourage you to seek out (if possible) social groups that are similar to your interests... small ones, preferably.  In fact, I do have another friend (possible Aspie) in the area who doesn't like gatherings of more than about 3... at that size or with just him and me, we have great, productive conversation... often for hours on end... despite the fact that our bases of knowledge (him: history and art, me: sciences and foreign language) are so different.  Honestly, he's more afraid of crowds than my dx'ed ass is!

Like you, I'm also waaaay the hell too much into my research interests.  I suppose that's what makes me an intellectual-sounding molecular biologist and psychopharmacologist.  Being fluent in German, I also love researching foreign languages (especially central European ones), making me... uhhhh... a... cunning linguist. 

And about your 5-HTP post.  I totally understand.  And I will analyze this from a pure third party point of view.  You posted, and did not get such great amounts of feedback.  So you're offended.  Frankly, I would feel the same way.  Both you and I need to, as the NTs LOVE to say, "suck it up", as not everybody loves our ideas dearly.  Those NTs never speak up as much as we would (and IMO, they SHOULD).  Sad but true fact of life ;) But as said before, NTs DID find your post helpful; they just chose not to reply in such a manner, since NTs aren't offended by non-replying; whereas us Aspies are.  Weird eh.

And may I have a suggestion for your career path.  Crime probably isn't the best idea.  Many of us aspies find ourselves in scientific and social-scientific research.  Maybe even in psychology if autism interests you that much.  Otherwise, in anything else that interests you... biology, chemistry, physics, astronomy, archaeology, sociology, biochemistry, social work, or what have you.  As my father once noted to me, the most successful researchers at the company he works for (a certain unnamed pharmaceutical giant based in Indiana), are either batshit-bipolar and/or Aspergian in personality.  You and I probably have great potential, but we (and society) have yet to realize it.

I'm 18 and I learned about autism a year or so ago through research on the internet. As I read through all the information I realized that it all sounded just like me, so I self-diagnosed myself as being autistic. I have not sought "professional" diagnosis, because I do not see what good that would do. Neurotypicals and the rest of the world could care less about autism anyways. I have learned a little bit so far but I am still really confused about how the world works. Group socialization with neurotypicals is virtually impossible for me. The rapid, fast paced social interactions of neurotypicals is way too fast for me to understand so  I am left as just an observer, rather than an active participant. Being with just 1 neurotypical at a time is a little better because I have the full attention of that person. But usually I am simply left alone with no social interactions, spending the bulk of my time doing solitary activities, or serious research and study in topics that interest me. One thing that I have learned, is that in my attempts to give people compliments or try to be helpful or provide a service of some kind, that these actions will usually have the opposite effect from which I intend. For example, in my post in which I suggested that people try 5-htp, my intention was to be helpful, however I doubt anyone took me seriously and I probably did not do anyone any good. Because of these mis-communications inherent with autism, it is difficult for me to see how I might be able to contribute anything to the world. So this leaves me with with the options of self-autonomy, crime, luck, or the loving kindness of understanding neurotypicals as possible strategies to get through life. But without these social communication skills and empathy, how is one to survive and thrive, without becoming a miserable isolated person, confused and mad at the world?

<{POST_SNAPBACK}>

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Hi,

This is my very first post on the boards here, but I thought I'd start here because both my 7 year old son and my husband have Asperger's.  My son was officially diagnosed when he was 5 and in Kindergarten.  My husband hasn't been diagnosed...but there's no doubt really that he has Asperger's as well...he agrees. My daughter (almost 12) and I are "neurotypical" ...she is anyway...I hestitate to use the word neurotypical to describe myself since I have suffered lifelong bouts of depression/cyclothymia and don't think of myself as typical of anything!    Our family doesn't do anything the expected way, and we have many challenges, but have kind of made up our own family structure as we go along...one that works (vaguely..sort of ..sometimes) for us. 

My son's areas of great interest are weather (particularly storms, especially hurricanes and tornados), cataloging birds and animals and researching them, geography, earthquakes, volcanos, and his Thomas the Tank Engine toys.  He writes in notebooks constantly and has probably filled between 40-50 in the last 2 years.

I'm wondering if you have any tips for my son as he goes forward in life and/or any tips for me as his mom to be a better support person for him.

Thanks much!!!!  I really appreciate the challenges and frustrations you must feel sometimes in the whole communications w/neurotypicals arena.  Living 24/7 with 2 Aspies has been quite eye opening to say the least.

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One thing that I have learned, is that in my attempts to give people compliments or try to be helpful or provide a service of some kind, that these actions will usually have the opposite effect from which I intend. For example, in my post in which I suggested that people try 5-htp, my intention was to be helpful, however I doubt anyone took me seriously and I probably did not do anyone any good.

<{POST_SNAPBACK}>

My apologies for totally missing this thread - I rarely get past the Zon and Alex Show.

I don't think that anyone responding who took it as anything but intended as helpful.

However, there are folks who should stay away from 5HTP.  So I saw your post,

and some of the follow-up posts as starting points for proviiding a counterview.

So, I'd have to say yes, your post was taken seriously.

Please bear in mind that most of us non-autist posters range from "mildly-cracked" to "batshit crazy",

and are not very representative of the NT population.  Sometimes we don't even represent ourselves

very well, which probably IS fairly neurotypical.

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