Is anyone here familiar with asperger's syndrome?

[dawg]

I have a second grader who exhibits many of the symptoms of AS, along with ADHD. It is making things very difficult at school, and that is putting pressure on our entire family. The school system is unable to control him, and my wife is falling deeper and deeper into depression.

We have spent thousands on psychologists and psychiatrists, and are treating the ADHD and other symptoms with medication, but apparently to no avail. I am at my wits end, and am afraid of my family falling apart over this.

Does anyone have any experience dealing with a situation like this?

[BurtWorm]

1. Is that the so-called "little professor" syndrome?

[dawg]

3. Yes, only it's the little dictator syndrome with us.

His intellectual development is at or above grade level, but his emotional/social development is that of a three year old. He is very inflexible and becomes violent when he doesn't get his way. He does not understand concepts like "fairness" and "taking turns".

[sangh0]

2. Several DUers have asperger's

I don't remember who they are, but they will probably be posting soon enough.

[SmileyBoy]

13. I have it...

Diagnosed in 1997 at the age of 15. Had a horrible childhood as a result of having all of the problems and not knowing where they were coming from.

[dawg]

15. Were you ever violent?

That's the main problem we are having. I don't think violence is the root problem, however. I think his thinking is such that he feels very threatend by situations, and the violence is a "logical" reaction to his threat level. In other words, if I felt as threatend about something as he does, I would get violent, too. Only thing is, he shouldn't feel that threatend and needs to learn how to cope. Does that make any sense? Did I spell threatend right? Clearly, I am not in my comfort zone either.

[SmileyBoy]

23. Not violent, but very irritable.

I took meds to get rid of that. It was the combination of not understanding what was wrong with me, with the social anxiety and the family quarrels that made me more deeply depressed than anything. But then again, I never had any real inclinations to violence as a kid. I would actually attempt to be violent, and not succeed. It was just a high amount of frustration more than anything.

[AlienGirl]

24. Violence

I was never violent per se, but I did lash out when I was frustrated. I would tear paper and pound on things, and once broke the ashtray in my mom's car.

Also, sometimes what I thought of as "friendly play" was interpreted by others as an attack, like jumping onto a kid's back from a windowsill because I wanted to roughhouse with her.

Tucker

[dawg]

27. Alot of it is frustration.

I think much of the trouble comes when they try to force him to do something instead of trying to coax him into it. He feels violated and lashes out.

He does play rough, like you mention you did. Lots of times he hurts you by accident - it would seem like a cool thing to him to climb the headboard of my bed and jump on my back unexpected. And he would be really sad if he hurt me in the process ...... well, most of the time, anyway. I'm not Mommy, you know.

I think girls with conditions like this tend to be less violent. Perhaps that is sexist of me to think, but I do have that perception.

[section321]

4. My neighbor across the street. Her daughter has it...

Very bizarre.

I don't know much about it, but I could ask her where you can find more info. We're in Los Angeles.

Drop me a private message if you want me to ask.

[Red_Viking]

5. A friend's son

He's 13 now, and managing much better. When he was younger, though, he was prone to fits of violence, throwing desks and chairs, etc. I believe the best solution they found was a combination of medication and "special education." He went to a school where they dealt with all kinds of special needs. In his case, he's extremely intelligent but highly volatile, so he learned at his own pace in a VERY structured and controlled environment. He had clear consequences for losing his temper and acting out. With such tight boundaries, he got better. But it took one-on-one attention from an educator. He's in middle school now, and just returned to the general population last year. He's a great kid, funny, really handsome little guy. Still a bit immature, but most boys are. I think he turned out just fine, and so will your son.

:)

RV

[dawg]

12. Thanks

That's encouraging. I love to hear success stories, and I believe my little guy will turn out o.k. in the end. He can be so sweet and loving and it just breaks my heart that people see him as being such a problem. If I could find a nice desert island with plenty of coconuts to eat, I'd take the wife and kids and we'd live happily ever after - he could raise all the hell he wanted to and there'd be noone to complain.

[Kat45]

6. A woman at church's son has it, and he's doing pretty well

I think she found programs early on that deal specifically with these kids. He's in the regular school with a special ed aide to help keep him on topic. He knows everything about dinosaurs and will talk endlessly about them if given the chance. He also goes to our church, and I can see that his emotional level is that of a small child. I don't know where you live, but I'd suggest doing some research to see what help there might be for such special needs kids.

[dawg]

9. I live waaaaaaaaaaay out in the sticks.

This ain't no Atlanta dawg. Our school system has tried to co-operate, but I don't think they've ever had a kid quite like mine. He has his own para-pro and is in special-ed 4 out of 6 periods (soon to go to 6 of 6, I expect)

We got the lunchtime call today that he is out of control. I may have to quit my job and move to a bigger city just to find someplace that can deal with him. I'm really scared about this situation. If anyone knows of a good school in the Southeast for helping these kids - I would appreciate it.

[short bus president]

7. IIRC

Aspergers is considered to fall on the Autism Spectrum in many clinicians' definition of that spectrum. this link will take you to a resource I'm familiar with through research at UNC. Maybe it can help you find a specialist in your area, or a support group.

[Birthmark]

8. My son is autistic.

He's very high-functioning and exhibits many Asperger-type symptoms. The first thing I would counsel is *patience* - and lots of it. Big help, right?

We went though a couple of different medications before we found one that we could accept and was useful. We have been lucky regarding the schools -- or perhaps it's more a combination of my son's work ethic and my assertiveness and the school's not wanting any big problems. Is your son in Special Ed classes? It sounds like that would help.

The way I look at the situation is this: Nothing happened to me, nothing was caused by me, why should I feel bad. From my son's perspective, nothing is wrong with him. He is who he is. I don't think that he feels all that different from other kids. That's not to say that I haven't repaired holes kicked in the walls and doors; or that I haven't had to endure hours of screaming; or that I don't have to be aware of dozens (hundreds?) of details that are important to him -- and by extension, my peace of mind. I've had to endure all those problems and more. But there are positive aspects, too, believe it or not. One is that my son is 15 now, but still has the wide-eyed (and frequently charming) innocence of a much younger child.

I don't know if any of that is what you are looking for. If I can be of any help, just ask. If you'd rather, you can e-mail me at [e-mail]

Good luck to you and your family. It's tough, but worthwhile. Honest. We've learned a lot about ourselves.

[clar]

10. I believe Yale Psychiatric Institute

has done some extensive research on AS. I gather your son has not been diagnosed as having it. Try and find someone who's had a lot of experience with diagnosis and treatment. Good luck.

[dawg]

11. He has been diagnosed as borderline AS.

His official diagnoses are as follows:

psychologist #1 - ADHD

psychologist #2 - ADHD with and obsessive personality but not OCD and very "aspergery" although not meeting all criteria for AS

The Marcus Institue in Atlanta - I still haven't figured out exactly what those ignorant sonsabitches had to say, but I think it worked out to "borderline aspergers"

psychiatrist - "labeling is not important, each case is different - let's see what we can do to treat the symptoms"

Quotes are paraphrased

[Brotherjohn]

17. My son (who's 3) has been similarly diagnosed...

... though only by our pediatrician. But her husband is our son's neurologist, so she's pretty informed on such things (my son went to him and some physical therapy early in life due to some developmental problems).

The "diagnosis" such as it was, was something like "Somewhere in the spectrum of disorders between OCD and Aspergers; read up on Aspergers and autism just to be informed". She also said he was "behaviorally/emotionally delayed" (although ahead of the game as far as physical and intellectual development).

This scared us a lot, because we thought his problems were over. But we're coming to realize that he's just going to be a sensitive boy, if a bit immature.

I know you might be in a far more complicated situation, since your kid's already in school and having problems. But I would take such diagnoses with a grain of salt, especially the way you laid them out (and I really think our Dr. just wants us to be aware and approach certain things with him in a way that might help). I think your psychiatrist is the most resonable. Every kid IS different, and all of these conditions are vague "syndromes" and "disorders". There are legitimate debates within the scientific community about what defines them (if not even their very existence).

For the record, my brother is a world class neurosurgeon (top of his class at Hopkins), and although he's no expert in the specific field, his opinion is that the psychiatric profession has a tendency to want to pigeonhole every kid with some diagnosis, and treat that diagnosis with some medication.

[dawg]

19. I do like the psychiatrist the best.

That is who we are currently seeing. Unfortunately, no matter what medication we try, there is little in the way of benefit. Adderall definitely reduces his hyperactivity, but it also tends to exacerbate his other symptoms.

Other than the adderall, I sometimes wonder if the other medications are helping at all. Sometimes, we think we see a slight improvement with a change in medication - but nothing dramatic enough to rule out the possibility that it is just wishful thinking.

[KamaAina]

20. It's the Yale Child Study Center that did. I should know. I helped them.

YPI is a separate entity located just off the medical campus, but I digress. At YCSC, we actually did the research that led to Asperger's being included in the DSM-IV diagnostic manual, rather than falling under "PDD-NOS" (pervasive developmental disorder, not otherwise specified).

As a matter of fact, when I worked with YCSC, we had an affiliate, Joel Bregman, who was with Emory for a time, but he has since moved back to Conn. Emory, does, however, maintain an Autism Resource Center: 718 Gatewood Dr. NE, Atl. 30322, [phone].

Oh, yes, it was Dr. Bregman who evaluated me, coming up with a diagnosis of high-functioning autism rather than Asperger's; it can be difficult to distinguish between the two, especially when both one's verbal and performance (block test) IQs are off scale! :-)

[crawfish]

14. Asperger's

I have asperger's, and my son has tendencies of it.

The anger he is showing is very likely frustration. A major trait of AS is a lack of social skills; for instance, facial expressions. AS sufferers also live by an internal set of "rules" - they tend to be very rigid and structured in how they behave. They get frustrated when the behavior of other kids inevitably doesn't follow those rules.

Thankfully, AS is a high-functioning version of autism. While your child will likely always suffer from elements of it - he'll never be a master of reading people - he'll learn to adjust his life to it and will turn out just fine. I've never been a "people person", but I do have a family and a few close friends and a solid career developing software. My son is in fifth grade now - we held him back one year from kindergarten for social reasons - and he is one of the smartest kids at school, a class leader who everyone wants on their group projects.

There is hope. I'm not a professional, but these are what I would suggest for dealing with him:

1) patience. Don't lose your temper, give him time to answer you, don't give up on a conversation when he keeps going into "another world"

2) structure. AS kids LOVE predictability. They find comfort in it.

3) guidance. Role-play with him; tell him exactly what to do in certain situations. For instance, my son used to run away when his grandparents visited; he didn't know how to resolve his excitement. We told him to walk up and hug them, to say hello...and he did.

4) understanding. He will be different than most of his peers. This is not necessarily a bad thing. Everybody has their own particular struggles, these are just his. Let him be the kid he's comfortable being, and gently instruct him in areas where he's uncomfortable.

[dawg]

16. Thanks, crawfish

It's so reassuring to hear from successful intelligent people, such as yourself, who share my son's condition.

At home, we are accustomed to our son's behavior and have been successful at dealing with his inflexibility. It is the school which is the problem. Last year, they would send him home very frequently. This sent a bad message, 'cause he really didn't mind going home. This year, I intend to put my foot down and not allow that to happen. He needs to learn that he is stuck at school until 3, so he'll need to make the best of it. More importantly, the faculty needs to internalize the fact that they can't just send him home when they are having problems.

I sometimes think it would be better just to homeschool him, but my wife would have to do this as my earning potential is higher right now, and I am afraid she couldn't handle it emotionally. Besides, learning how to deal with other people is what he needs. His academics are fine.

Oh well, I'm just venting I guess. This is only the 9th day of school and he has already been given in-school suspension.

[AlienGirl]

22. Facial expressions and body language and stuff

I have Asperger's-like traits and have a roommate who carries a diagnosis of High-Functioning Autism. (We both have little sense of direction--spatial agnosia--it's fun to go out driving together...!)

Something I found very helpful was to learn facial expressions and body language *consciously*, the way you'd learn to interpret a dog's or horse's body language. Most people seem to have an innate sense of what other people mean by their expressions and body language; people on the autistic spectrum often lack this ability.

I have difficulty recognizing faces, so I've learned other ways of telling people apart--the shape of their shoulders, their movement patterns, and things like that.

People with autism or Asperger's often have specialized areas of interest. Finding a way to relate the difficult social stuff to those areas of interest can make the social things easier.

A book I found really helpful was Desmond Morris's _Manwatching_. It explains many nonverbal cues humans send and receive, complete with pictures and diagrams.

Tucker

[dawg]

31. Some of that does apply to him.

I like to joke and cut-up, and I try to lighten his mother's mood by doing impressions, etc. I do a great Fat Bastard impression (sound, not visual). But if I do anything like that around the little guy he will attack me. It's very disturbing to him that I'm not using my real voice.

Sometimes he can take a joke and sometimes he can't. And he loves telling jokes when he's in a good mood. He does have a sense of humor - sometimes.

We know most of the things that will set him off, but the folks at school do not. And so often, they are so intent on making him follow their rules that they miss opportunities to coax him back into a compliant mood due to their misplaced notion of "punishing" his bad behavior.

[LynneSin]

18. it isn't the solution, but looking at the diet helps

My friend had a daughter who they swore was ADHD but the mother just didn't want to put her on ritalin. Instead she kept careful track of her daughter's diet and emotional moodswings. From the diet journal, she found that her daughter seemed to be most out of control after she ate processed foods.

When I mean diet, her daughter wasn't put on a diet to lose weight, she just modified her diet to include healthier non-processed foods.

BTw, even if you cook the perfect non-processed food - this doesn't help the fact that School Lunches are filled with just that. You might want to switch to lunch packing to ensure decent foods are in there!

[Karenina]

21. PLEASE PAY ATTENTION TO THE ABOVE POST!!!

Keep a diary of what the rug rats eat and HOW SOON behavior changes. This past weekend I returned to the farm that was my "incubator" here in Germany. Leon is now 6. I have observed him for years now and have recognized since his infancy das etwas stimmt NICHT. That with the backround of my younger son receiving the BIG A diagnosis at 3. His mom is in denial. He is as tall as a 9 year old and I caught the tail end of one of the other children attacking him. I made him look me in the eyes (first indication of a problem) before accepting his claim that he was OK. The CHILDREN are less problematic than their PARENTS.

These children CAN be helped. However, EARLY recognition is key. Little is known about Autism and MANY manifestations are thrown into the same bin. CHECK FOR FOOD ALLERGIES!!! (milk, wheat, preservatives, dyes, vinegar, yeast) KEEP A DIARY OF BEHAVIORIAL SHIFTS. FIND A MEDICAL PROFESSIONAL WHO WILL LISTEN TO YOU!!!

[dawg]

25. His diet is poor, I'll make no bones about that.

We do the best we can. He is very inflexible about the things that he will eat.

That being said, we have found no correlation between his diet and his behavior. There seems to be no way of predicting when he will have a bad day. They just happen and that is all. Sometimes, when we expect a bad day, it will be good. There's just no telling.

I'm afraid I don't entirely understand the rest of your post, however I appreciate your comments and will certainly rack my brains to see if I can link any of his behaviors to his diet.

I really don't think it's diet related, though. But I've been wrong about lots of things before!

[GoddessOfGuinness]

38. If you talk with him about his diet, it will help...

He must know that he has a behavior problem. As difficult as it may be to change parts of his diet, it's twice as important to do so. I would talk with him about this as if he was an adult. When he understands that certain "foods" are in fact poisons for some people, it'll be easier.

I've found two diet deletions consistently helpful for both my boys...caffeine and red dye 40.

Check labels carefully. Some root beers and orange sodas contain both. Just because a product isn't red, doesn't mean it doesn't have red dye #40 in it. Some medicines contain the dye, too. I can't tell you what a difference it's made eliminating those key ingredients from their diets. Sometimes my 5 year old will come home from a friends after having Hawaiian Punch, and I can tell without asking that he's had the stuff, because he is literally bouncing off the walls.

[TrogL]

39. stimulants help some ADHDers calm down

My son drinks coffee and it puts him to sleep. I find coffee relaxing.

[noonwitch]

26. What city/state do you live in? A children's hospital would be a start

I don't know much about this syndrome, only that it is sometimes confused with autism, because some of the behavior is the same.

There are a lot of newer meds that they can try-resprodil, concerta, and some other ones that have some success. Behavior modification may work, too, but that's a little cold sometimes.

[dawg]

29. I live in Freeperville, Georgia ...

approximately an hour's drive away from the 21st century.

Actually, our psychiatrist seems to be pretty cutting edge. We've already tried risperdal, paxil, concerta, clonidine, etc. We're currently trying adderall for adhd, trazadone to help with sleep, strattera and zoloft to deal with the other symptoms and supplement the adderall.

We may be doing everything possible. We've certainly done tons of research on autism, adhd, and asperger's syndrome. Behavior modification may be an option, and we are trying it on a limited basis, but our child clearly has a non-standard neurological makeup. This is, for the most part, not learned behavior on his part. We are trying to teach him coping skills, to be able to respond appropriately to situations despite his condition, but have met with only limited success.

[zekeson]

28. Lots of good resources available

many states/counties have funding available to parents for services upt to and including respite care - which can be greatly needed. My wife works with DD kids and gave me a few good Asperger's links:

http://aane.autistics.org/ New England Asperger's Association
http://groups.yahoo.com/group/Aspergerscircle/ Support Group
http://www.geocities.com/Athens/Troy/1807/ A personal look at Aspergers
http://www.autism-pdd.net/ resources
http://www.pslgroup.com/dg/85be.htm more resources.

Good luck - seek out resources, check out state/county resources, many times services are available regardless of income.

[dawg]

30. thanks for the links

I've been told the only way I can get financial assistance is through a Katie Beckett Medicaid waiver. And my understanding is that the waiver only applies when the child would need to be institutionalized were the waiver not approved? I'm not sure.

I have insurance, which covers the meds but not the shrink. Mental health parity does not exist in this country, and that is a damn shame.

[Palacsinta]

32. Husband's piano student

has Asperger's. He's six. My husband keeps the lesson short...about 20 minutes and takes the top and front off of the piano so the little boy can see the mechanism when he plays. My husband has also devolped a teaching method by using math and the alphabet along with the notes. The little boy, who is exceedingly bright, is starting to learn tunes by figuring out mathematical formulas and and also by making musical phrases out of the letters.

[dawg]

33. it is very sweet of him to try to accomodate an AS child ...

and PA is cool, we went there on vacation this year. (Pssst. don't tell anybody, but that big bell has a crack in it. I hope my kid didn't have anything to do with that)

[Palacsinta]

34. No, that was MY kid.....

Whom everyone thought was named "No-Johnny". :D

Glad you liked PA. C'mon down to PA Dutch Country sometime!

[dawg]

36. We came through.

I did a routine for probably 30 minutes, using my best Beavis and Butthead voices, telling my wife:

Heh heh heh, this town's name is "Intercourse" heh heh heh! etc. etc.

We did Hersheypark, too, and the little one rode the Comet. He was proud 'cause it was his first big coaster.

[TrogL]

37. Messiaen

A French organ composer, created religious compositions out of the letters of religious phrases.

[TrogL]

35. I have been diagnosed

with Asperger's and hence have tons of resources.

What specifically did you need to know?

PM or Email me ([e-mail]) if you want to discuss privately.

[Interrobang]

40. Start NOW on developing coping mechanisms!

I grew up physically handicapped and in the top 2% for intelligence, which in many ways is a similar hex on social skills, although to a much lesser degree. My parents never coddled me or overprotected me, and I was always expected to behave and interact as normally as possible. Now I'm giving other people lessons on consciously developing their social skills and on dealing with their "gimpiness" (those of them who are newcomers to it, that is), much of which is the same thing.

Your son will need to know things like how to read body language and facial expressions -- and how to perform them for himself, what to do if he gets into a social situation he can't handle (relaxation techniques, avoidance techniques, or just walking out), how to control his tone of voice and speech patterns so that he doesn't seem hostile, detached, or uninterested to others, how to act and function for himself in a variety of social situations (I suggest specific instructions and role-playing afterward), how to deal with people who are different from him in possibly incompatible ways, and a myriad of other 'procedures' that you probably learned instinctually but I didn't, and neither will he.

If he does indeed have AD(H)D, he'll also need clear motivation towards doing specific tasks (my fiance, my boss, and one of my best friends and one of his kids are ALL ADD!). He will need to learn patience, how to deal with frustration (such as by getting up and walking away for awhile, and you may have to specifically *tell* him to do so!), and where to find and how to set his own limits. You may also even have to teach him when and when not to ask for (or offer) help. (Some people with these sorts of conditions wind up annoying an awful lot of people simply because they're always trying to help others, and they wear out their welcome -- and don't realize it.)

With luck, LOTS of patience and hard work, and some professional help, you can help him become a functional adult. However, the time to start working on 'real-world' coping skills is NOW. If your son hasn't picked up a goodly number of these things by the time he's in his late teens or so, it'll probably be too late. Speaking from experience, trying to teach coping skills to a forty-something marginally OCD fellow with ADD is NOT easy, and it's well past the time when something should have been done. Fortunately, my parents helped me a lot mostly by making me deal with things. The fact that I also learn from my mistakes and realized that something was wrong helped, too. I hope your son is the same!

[TrogL]

41. Good advice

My parents sheltered me too much. They didn't want me taking the bus (never did figure out why) so I never developed the rough-and-tumble social skills of my peers.

They were also very "British" and stiff-upperlipped so I never learned how to deal with strong emotion.

They also did all my organizing for me so I missed those skills as well.

In hindsight, however, I suspect that they knew there was something wrong and were trying to protect me.

[dawg]

42. that sounds like very good advice .....

Last year, our school used social stories to illustrate situations to our son, and to model the appropriate reactions. I will make sure that continues this year.

I've been trying to teach him coping skills in a way that he can understand. The combination of the AS and ADHD makes it hard for him to pay attention for long.