# Seeking info: Does anyone here have any experiences with Asperger's Syndrome?



## theresa57 (Nov 23, 2008)

My 18 year old son has been diagnosed with Asperger's Syndrom, but I cannot seem to find out how to help him. 
We went to our local mental health clinic, and he was interviewed and diagnosed, but they never called back.  I just want to find everyday people who have family members with Asperger's so I can understand it better. 
He has some very unique ways, and he is inflexible on change in any area!


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## Jeff (Oct 28, 2008)

theresa57 said:


> I just want to find everyday people who have family members with Asperger's so I can understand it better.
> He has some very unique ways, and he is inflexible on change in any area!


My grandson has Asperger's. Send me a PM and I'll try to put you in touch with my son and daughter-in-law, if you'd like. They've been down the road with it.

Don't panic. It isn't as bad as it might sound. Absent minded professor is a valid description of someone with Asperger's. If your son's gone 18 years without being diagnosed it can't be severe.

There are a lot of nurses and medical professionals here. I'm certain that our members will be able to help you.


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## pidgeon92 (Oct 27, 2008)

No personal experience, but I heard this woman speak a few years ago on Science Friday, and she was fascinating... She also suffers from Asperger's.



Ooh, they still have the audio archive online... Look on the right side of this page, under Temple Grandin:

Science Friday - Temple Grandin


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## theresa57 (Nov 23, 2008)

Thank you! I just am so tired of hearing friends and family talk about how "wierd" he is!


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## Guest (Jan 14, 2009)

If he's 18 and has only now been diagnosed--GET A SECOND OPINION!  Asperger's is normally diagnosed in pre-school.


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## Jeff (Oct 28, 2008)

Bacardi Jim said:


> If he's 18 and has only now been diagnosed--GET A SECOND OPINION! Asperger's is normally diagnosed in pre-school.


Jim's right. I should have said that.


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## Gables Girl (Oct 28, 2008)

Sometimes it isn't so obvious with some people until they are in their teens, but I would definitely get another diagnosis.  There are a lot of books on Kindle on Asperger's type in Asperger's and they will pop up then you can sample them.  The Michael John Carley book is good.  I've had employees with Asperger's totally into their work to the exclusion of everything else and don't make any changes to their world.  Good luck, he isn't weird he is just different.


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## Linda Cannon-Mott (Oct 28, 2008)

As a nurse I believe in second opinions! I tell my family, friends, anyone that will listen. Too many people are misdiagnosed and treated incorrectly not to take the time to get a second opinion.

Speaking from a patient standpoint who was misdiagnosed by not one but 5 doctors *you are responsible for your own health*. *You * need to do the research. You need to list your questions and when that doctor tells you, have nice day because he has other patent's to see you must have the courage to say, "stop, I am paying for a service and I have questions that I need answers for."

I had 3 newspaper articles, a TV interview and I speak to Rotary Clubs, Sunday School classes, Garden Club's on this very subject.

If you are misdiagnosed you have a price to pay:

loss of time

taking medications that more than likely aren't helping but have terrible side effects

suffering if it is a medical condition that causes pain

frustration from not getting better

loss of self esteem and self consciousness if it is a medical condition that causes people to stare or make rude remarks

questioning your sanity

Let me get off my soapbox but the first thing you need to do is get that second opinion.

Linda


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## Anju  (Nov 8, 2008)

Theresa57 - sounds like you have some good help here, and there might be more who have not read your post yet.  I know nothing about it but there is a world of knowledge waiting for you.


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## theresa57 (Nov 23, 2008)

I was told he had sensory integration? issues, and that he had ADD, but things have progressed for the worse in the last two years.

He does not have any friends
Kids at school picked on him and called him names
He will only wear t-shirts and jeans (doesn't like the way other fabrics "feel").
I've never had any behavior problems with him, but he prefers to be alone
There is a list of less than 25 items that he will eat-EVER. 
He will not take any type of medicine for any reason
He would like to get a job, but has no idea what he wants to do

I just feel helpless sometimes....


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## Mikuto (Oct 30, 2008)

A good friend of mine has Asberger's, so I don't have extensive experience, but I have experience.



theresa57 said:


> Kids at school picked on him and called him names
> He will only wear t-shirts and jeans (doesn't like the way other fabrics "feel").
> I've never had any behavior problems with him, but he prefers to be alone


I was picked on in school, preferred to be alone most of the time, and have a distinct tactile dislike for fabrics that aren't cotton or silk/polyester blends. Those things might just be quirks, rather than symptoms. Though my friend with Asberger's dealt with the food issue you mention.

I don't know if this is much help, but I come from a family with extensive mental illness running through it, and I myself have Bipolar disorder, so if you have any questions on generic mental illness, or the mental health system in the USA, I can probably answer them.


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## theresa57 (Nov 23, 2008)

Just to clarify, my son is a wonderful young man. He has never given me a minute's trouble, and is a very caring young man. Even though he is 18, he looks about 15, and I would say that he is about 15 mentally. 
He got his driver's permit, but is petrified of driving, and he's told me that he doubts he will ever get married, because no girl would like someone like him. 

Thank you all for being so kind, and giving helpful suggestions!


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## Mikuto (Oct 30, 2008)

My friend with Asberger's Syndrome was the nicest, sweetest, most thoughtful girl you could know. She also had a full time job and several choice friends, so it's not the end of road if this diagnosis is correct.



theresa57 said:


> He got his driver's permit, but is petrified of driving, and he's told me that he doubts he will ever get married, because no girl would like someone like him.


Are you sure you're not describing me when I was a teenager? The similarities are wild!


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## Lotus (Oct 31, 2008)

I'd agree on getting a second opinion. It seems Asperger's has become a "popular" disease in the last few years. I have a feeling that a lot of people who are socially awkward or have other seemingly odd behaviors get lumped into Asperger's.

And, being 18 and having no idea what he wants to do for a job is in no way uncommon. I wouldn't even consider that a symptom of anything.


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## Linda Cannon-Mott (Oct 28, 2008)

Lotus said:


> I'd agree on getting a second opinion. It seems Asperger's has become a "popular" disease in the last few years. I have a feeling that a lot of people who are socially awkward or have other seemingly odd behaviors get lumped into Asperger's.
> 
> And, being 18 and having no idea what he wants to do for a job is in no way uncommon. I wouldn't even consider that a symptom of anything.


Asperger's is too quickly given as a diagnosis in today's society because 2 out of 3 kids from early school age to late teens have many of the symptoms. They are your typical kid, picky eaters, don't know what they want to do with their life, wear their feelings on their sleeves, mood swings, just to name a few.

Theresa I am not making light of your son's situation and he may very well have Asperger's. I am just encouraging you to get a second opinion. If nothing else it would give you peace of mind and if indeed he does have it then you form a plan of action. I would imagine there are support groups and that is where I would would start.

Linda


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## Mikuto (Oct 30, 2008)

A second or third opinion is always extremely important in any sort of medical case. *Nod* So I'm agreeing with everyone else here. If possible, please have him evaluated by a few more doctors before you settle into the diagnosis.


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## theresa57 (Nov 23, 2008)

I will work on that 2nd opinion, thanks! 

Mikuto-that IS something,isn't it? lol

I'm trying not to worry too much just yet, as he is safe here at home, and enjoys spending lots of his time online playing City of Heroes, watching Jeff Dunham, and collecting dragons!


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## Cowgirl (Nov 1, 2008)

I believe  Bill Gates has Asperger's and he's done pretty well for himself!


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## kim (Nov 20, 2008)

Theresa, 
I have no experience with this subject, but never the less, my heart goes out to you.  It can be very difficult to get the right help for our teenagers.  Be tenacious and don't give up.  You already have some good advice here and lots of moral support.  You'll find the right answers for you son and he'll be greatly helped by it.  

Good Luck!


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## Gertie Kindle (Nov 6, 2008)

theresa57 said:


> I'm trying not to worry too much just yet, as he is safe here at home, and enjoys spending lots of his time online playing City of Heroes, watching Jeff Dunham, and collecting dragons!


Sounds normal to me!!

I'm not making light of this either. I just hate to see someone categorized or labeled because they don't "fit in." I also don't want to see your son hold himself back because he only sees himself as other people see him.

I'll 23rd what everyone else has said. Get a second and even a third opinion, and don't go to someone your first opinion recommends. They might just back each other up as a matter of professional courtesy.


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## chynared21 (Oct 28, 2008)

theresa57 said:


> Just to clarify, my son is a wonderful young man. He has never given me a minute's trouble, and is a very caring young man. Even though he is 18, he looks about 15, and I would say that he is about 15 mentally.
> He got his driver's permit, but is petrified of driving, and he's told me that he doubts he will ever get married, because no girl would like someone like him.
> 
> Thank you all for being so kind, and giving helpful suggestions!


*Though he may mentally seem 15, I bet you he's pretty intelligent.

My daughter went to pre-school with a little boy who was "difficult". Thankfully his mom wasn't one of those "not my kid" moms. She knew something was different about him but couldn't put her finger on it. After extensive testing, etc. he was diagnosed with Asperger's. He didn't like change, couldn't grasp the concept of not being able to do what he wanted to do even if it didn't go with what the other kids were doing or learning. He also didn't like to share and if he picked up a toy, he believed that it was his to keep. At the age of 5 he was about as emotionally mature as a 2 year old but he was brilliant. Once he was formally diagnosed and had his own para to work with him, he seemed to be on the right track and I could see a definite change in him.

I'd definitely seek other opinions as others have mentioned.*


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## theresa57 (Nov 23, 2008)

Chynared, that's the way my son is! Peer pressure does not sway him. If he doesn't want to do something, no amount of teasing in this world will change his mind.

For a wild example:

About 3 Thanksgivings ago, we were having dinner. Our son comes to the table and helps himself to the Velveeta Shells & Cheese (the only thing on the table he liked). His dad jokingly asked him if he wanted some mashed potatoes. He said no $60 if he would take 1 small taste of potatoes. 
Drew thought about it for a few minutes, then smiled, shook his head, and said, "no thanks!"


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## qotdr (Nov 22, 2008)

There are many other things it could be besides aspergers. A second opinion is obviously called for. Usually aspergers would have been apparent way before age 18. I'm a therapist and deal with alot of these issues with my patients. If he does have aspergers, there are people who specialize in this.


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## chynared21 (Oct 28, 2008)

theresa57 said:


> Chynared, that's the way my son is! Peer pressure does not sway him. If he doesn't want to do something, no amount of teasing in this world will change his mind.
> 
> For a wild example:
> 
> ...


*LOL, in this day and age it's a good thing that he doesn't bow down to peer pressure ;-p Hmmm, can I have a taste of the potatoes...mom needs book money  *


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## Betsy the Quilter (Oct 27, 2008)

Theresa57, please keep us posted on your son and what the second opinion tells you.  We're thinking of you!

I am moved not only by Theresa's story but by the number of our members who have offered such good advice and their own stories in support.  You all are the best!  Thank you!

Betsy


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## wvu90 (Dec 27, 2008)

Theresa57,
  I am new to these boards and haven't really posted, but thought I would respond to your post, as I have a 7 year old who  over the past year was diagnosed with Asperger's.  I know your frustrations and worry.  My son had problems in preschool with getting along with some kids, wanted everything to go his way, and only wanted to do what he wanted to do.  He is sometimes on the loud side and more aggressive then he should be.  He is VERY set in his ways.  He is the youngest of 3 boys, so many of his behaviors we attributed to this.  He had to be loud to be heard and was always rough and tumble with the brothers.  Everyone thought he would grow out of it as he matured.

  In kindergarten, he again had trouble with behavior.  One minute he would be fine, but if something upset him, he could not get over it.  He would get very upset and whoever happened to be near him would get the brunt of it.  He loves people and wants to be friends with everyone, but has trouble reading people's social cues, which is what has caused him problems.  He just doesn't know how to react in certain social situations, which a big part of Aspergers.  He would have a bad day at school and say that so and so had laughed at him.  It was usually that he had said something funny, but he doesn't understand that they are laughing at what he said, not him personally.  The teacher he had that year was not very patient with him and it was always just him being bad.

  The teacher he has this year in 1st grade is wonderful and the school  has been great.  With further evaluations and testing it has been determined that he does have Asperger's, not ADHD, as previously thought.  They are working with him at school, teaching him to read social  cues and how to deal with things when he is upset.  He also has sensory integration disorder.  He has trouble with getting to sleep at night, which the dr thinks causes a lot of his hyperactiveness.  Since he has been getting more sleep, he is doing much better in school.  On warmer days, we walk to school (1 mile) to try to get some of his energy out, this seems to help too.  The teachers have said  he is doing so much better with his aggression.  If he gets upset, he goes and gets his sand himself, instead of needing to be directed by the teacher.  This has been a huge step for him.  

  It is funny you mentioned the mac and cheese for dinner.  My son too only has a few foods that he will eat.  Kraft mac and cheese is one of his favorites and it can only be the kind in the box, no microwave kind, he can tell the difference even if he doesn't see you make it.  My family was always giving us a rough time about his eating, but now that we know there is a reason, they have laid off a bit.  He won't even try anything.  Another Asperger trait is really focusing on a certain thing.  My son's is Star Wars.  He has watched the movies more times than I can count.  Actually had to get him the new DVD's for xmas.  He can tell you anything you want to know about SW.  At school, when they want him to write, it is always about SW, and he doesn't like to write if he has to write about anything else.

  Sorry this is so long, I just wanted you to know you are not alone.  I know how you feel when you said people say your son is different.  I always worry about parents in my son's class thinking he is a bully and bad kid.  And that is far from the truth, but on the outside looking in, it is easy to see why people would think that, without knowing all of the facts.  Our kids are just wired differently and see things a little differently then how the rest of the world does.  Evan is the sweetest boy, always wanting to hug and snuggle, so it is so hard as a parent to see your child struggle and not know how to help them.  It is esp hard to not understand how their brain is working and why they think the way they do.

  Well, I hope this helps some.  Like the others have said though, it won't hurt to get  a second opinion as well.  Keep the board posted how things are going.  If you have any questions for me, please feel free to email me  [email protected]


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## Michael R. Hicks (Oct 29, 2008)

Theresa57 -

I don't have direct personal experience with Asperger's or the other syndromes that range from ADD to autism. However, I happened across a lot of information on it while I was researching the environmental impact of mercury. One of the sites I ran across was http://www.generationrescue.org, which has a lot of information about these "diseases," and makes a very compelling argument asserting that these disorders are in fact forms of mercury poisoning.

You may be wondering where your child could have come in contact with mercury. Aside from the 200,000 pounds of mercury that coal-fired powerplants spew into the air each year (which we not only breathe in, but eat in the form of contaminated fish, etc.), our children get direct injections of mercury with their childhood innoculations: many of these use ethyl mercury as a preservative. So by the time your child is two years old or so, he or she has had several small doses of mercury injected straight into their bloodstream. And mercury is generally considered the most toxic substance on the planet after plutonium. The use of ethyl mercury as a preservative in childhood innoculations also seems to track well with the explosion of autism and related disorders. A number of European countries have made this connection and have banned ethyl mercury preservatives.

Not all children have it because some are more vulnerable to this poisoning than others, as their bodies have much greater difficulty in shedding heavy metals. This is also why basic testing for heavy metal poisoning often doesn't reveal positive results...initially. That's because the "pathways" the body uses for getting rid of this stuff is blocked, and only more in-depth testing and chelation therapy will "shake things loose" enough to show the true extent of the poisoning.

And that - according to the information that's summarized on generationrescue.org - brings us to the good news: it *is* treatable with a variety of treatments for heavy metal poisoning.

Again, I don't claim to be an expert, but for anyone with a child suffering from any of these conditions, I strongly encourage you to check out that and other sites in hopes it may help.

Cheers,
Mike


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## Leslie (Apr 7, 2008)

Mike,

I think it is important to point out the thimerosal - ethyl mercury - was banned as a preservative in vaccines in the US in 2001.

http://www.urmc.rochester.edu/PR/news/story.cfm?id=1848

L


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## drenee (Nov 11, 2008)

As I sat here and read this entire thread this morning I was moved to tears.  I am very moved by the show of support and information given to Theresa.  
What a great community this is.
Theresa, my thoughts and prayers are with you.  
debbie


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## theresa57 (Nov 23, 2008)

I am overwhelmed by the kindness shown here! Thank you all from the bottom of my heart. 
Drew is content to be what he is, for the most part. He gets frustrated sometimes because he WANTS to be able to get a job, drive a car, date a girl- but anxiety about trying to do these things and failing compels him to stay in his room where the world is safe, and no one can hurt him. 
My husband (who lost his only son to lukemia in the 1970's) adopted Drew at the age of 5, after my ex husband signed away his rights in order to avoid paying child support. Having been through the pain of losing a child, he is fine with Drew staying home until he WANTS to try to get out in the world. 

I do not want to push my son, but I hate to see him deprived of any kind of social life. On the other hand, as a Sheriff's Department employee for 15 years, I know the world is not an easy place for those who are "different".  I pray. A lot. My son will be fine, I just know it.  Now all I have to do is convince my heart. 

wvu90- I sympathize with you. School can be much harder on children with disabilities. I finally took my son out of school in the 9th grade, after some boys paid a girl to jump on him and beat him, then later, the boys cornered him in the hall and called him vile names and told him to perform obscene acts on them. The school did NOTHING, and I was livid! 

I finally talked to someone from the local mental health clinic where he was diagnosed, and asked her why no one had called us back. She promised they would call me yesterday. Guess what? No call. 
We will survive with or without them, and my son WILL be a wonderful adult, regardless of circumstances. 

Thanks again for letting me get my thoughts out in the open.


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## Michael R. Hicks (Oct 29, 2008)

Leslie said:


> Mike,
> 
> I think it is important to point out the thimerosal - ethyl mercury - was banned as a preservative in vaccines in the US in 2001.
> 
> ...


Leslie -

Ah! Thimerosal may have been banned earlier, in 1999 (according to an ABC article I found). However, at least some vaccines in the U.S. still use mercury as a preservative: last year we were going to get our oldest son (now 12) a flu shot, but the only vaccines they had left contained mercury (we specifically asked), and they weren't able to get any more doses without the preservative. So he wound up not getting a flu shot last year.

Of course, it's not like we need it in our vaccines - there's plenty to go around in the water of so many of the lakes and streams! 

Theresa -

I CANNOT BELIEVE what happened to your son in 9th grade and the school did nothing! Good grief! I'm not generally an advocate of litigation, but you should've sued the district for that one...Grrr!


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## nickih75 (Dec 17, 2008)

Bacardi Jim said:


> If he's 18 and has only now been diagnosed--GET A SECOND OPINION! Asperger's is normally diagnosed in pre-school.


A 2nd opinion is certainly not a bad idea. However, my son 10 was diagnosed with Aspergers this October.

We deal with alot of the same things you are, Blake as 1 good friend that he plays with and that's it. He won't wear button up shirts because they are "itcy" He has figured out to put a t-shirt on under them and then it's ok. He has a very limited menu but I've learned to work around him.

In school he does fine academically but struggles with the social aspect of school. I'm new with this diagnosis too.. so I really can't offer any "advise" but as a fellow mom we can be support for each other


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## Jeff (Oct 28, 2008)

Take heart, Teresa.

If I had been born in this century I’m almost certain that I would have been diagnosed with attention deficit disorder and dyslexia. I was fortunate however to have been born just before the baby-boom and therefore went unnoticed in an overcrowded school system. Nobody put me in special education, gave me drugs or stuck any labels on me. As many of you here can and do often attest, I still don’t spell worth a darn and I often reverse letters in words or type the whole word backward (BJ catches me all the time) but I live with it as a fairly normal person.

My point is that there are millions of people with Asperger’s syndrome and other autism related disorders who live normal lives. Some don’t even know that they’re supposedly disabled. 

My grandson who has Asperger’s is a great kid. I have high hopes for him and I won’t allow his life to be limited by his so called disability.


Jeff


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## nickih75 (Dec 17, 2008)

Jeff said:


> My grandson who has Asperger's is a great kid. I have high hopes for him and I won't allow his life to be limited by his so called disability.


I had mixed emotions about having my son "labeled" I knew that as far as school went it would be good because he'd be able to get the extra help he needed with things. He now has a word processor he uses instead of having to hand write everything out because that was a huge source of headache for us. He works with the school's social worker once a week and has one on one time every day with a special ed teacher. It's also given him the option of leaving the room if things are overwhelming for him or he can't settle himself down.

I think in the long run he'll do great things with his life.. follow his dad's footsteps go to Michigan Tech and become an Engineer.. LOL


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## wvu90 (Dec 27, 2008)

Yes, I feel the same way about my son being labeled, but like you said, having the diagnosis does help with getting him the extra help he needs in school.  

I am so sorry your son had to go through that at school.  That is terrible, I can't believe the school did nothing about it.  Sometimes you have to wonder what they are thinking.  I know how frustrating  it is when the school shuts their eyes to problems.  My oldest son had problems with a bully in middle school and it was one of the most frustrating things we have ever been through.  Best wishes and keep us posted.


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## theresa57 (Nov 23, 2008)

I have no problems with a lable, I just want HELP for him. If my husband or I died tomorrow, he would have no idea how to manage.


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## nickih75 (Dec 17, 2008)

theresa57 said:


> I have no problems with a lable, I just want HELP for him. If my husband or I died tomorrow, he would have no idea how to manage.


I have no idea why I didn't think of this sooner.. it could be a huge asset to you!! There is a organization called The Gray Center it is based in Grand Rapids, Michigan but they have a website. http://www.thegraycenter.org/ There is TONS of information on the site. A lot of "social stories" that are written to help people with Asperger's learn how to deal with situations they just don't understand. The stuff that the rest of us take for granted..


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