Asperger's Syndrome - any experience?

[JESW]

There is a good chance that DS9 has this syndrome. We have been through the testing and the consulting psychologist for the school (who did the testing) suspects AS. WIth the reading I have done on it lately I also suspect it.

We still have a long road to go....but I was wondering if anyone else here on the CB has experience with AS and how things have been going for you and your child??

Jill

 

[kpgclark]

Jill, I have no experience but I just wanted to know that I'll keep you in my thoughts. I'm sure it must be very difficult for you and your family. Hopefully after a diagnosis you will feel better and be able to move forward.

 

[BONZO]

I think that there may be some people able to help over on the UK CB.

Might be worth a post.

 

[Gupsmom]

I've done a bunch of reading on Asperger's. We have had on again, off again worries about my son. He's 6 now and doing so well, in all areas, that we've put most of our concerns about the spectum behind us.

AS doesn't have to be an end of the world diagnosis. I'm sure you're feeling a mix of fear, and relief (at having a name and a place to start). If your son hasn't been diagnosed with anything until 9, I'm guessing his symptoms are mild? It's widely assumed that Bill Gates, and many other great thinkers have/had this syndrome.

Best wishes. While I have no first hand experience, I'll try to answer anything based on all the reading I've done...if you'd like.

Jess

 

[mom2boys]

No first hand knowledge of Asperger's. As others have said, once a problem is identified it is much easier to manage.

 

[Poohnatic]

My nearly 8 year old son has Asperger's, and was diagnosed right after he turned 6.

There's a few parents here on the DIS, some of us pop in an out over at DISabilities when we've got specific questions.

A great resource is www.aspergersyndrome.org. Barb Kirby runs an awesome site, and there is a message board that has been very helpful. I agree with the other poster that you worry but are relieved to have a name to what makes your child tick. I have two copies of Tony Attwood's book "Asperger Syndrome" and share one out to anyone who will work with my son.

My son is doing much better, is in a special ed program that he is thriving in and has finally found medications that work...we're still tweaking them. He went from getting 50's on the daily behavior report cards to usually getting 80 and up.

If you have any questions, feel free to pm me.

Suzanne

 

[JESW]

Thanks for all your answers and thoughts so far! We have always known that our son was "different" but haven't been able to put our finger on WHAT was different. I'm sure if we had him evaluated at an earlier age they would have come up with the same thing. Now in 3rd grade more issues are coming up with school work and classmates - DS has a hard time with some social situations - and he is now on an Instructional Support Plan. The school has been very helpful.

I have strong suspicions that my DH also has some form of Asperger's. He is extrememly intelligent, an engineer, a Fellow, and a respected employee at work. But put him in an unfamiliar social situation and he is lost. Lots of other things too.

The differences in our DS really came more to light when our DD was born 5 years ago. She is more typical (don't want to say normal!) and handles situations typical to children her age.

Jill

 

[grinningghost]

My nephew, who is 6 has it. Was diagnosed very young, I think around age 3. Some of his biggest problems involve any kind of change. He can't tolerate new people, new places or new foods. He has a set routine and if it's broken, it causes him great anxiety. It was thought that he would need to be in a special school, but after some specialized preschooling, he was able to go on to a regular elementary school.

He also has some strange quirks. Like he walks on his toes, and he has about a zillion Match Box cars, and he knows each and every one, and they must be lined up a certain way or he freaks. If he's showing you the cars, he will line them up and tell you which ones are which, and if you move one - you better run, because he's going to shriek like a banshee for hours.

The biggest problem with this boy, however, is his less than adequate mother. She has major issues, and probably shouldn't even have a kid living with her, but that's the legal system for you, show them a biological mother, and they'll show you a good home.

 

[s&k'smom]

Hey jesw please come on over to the Disabilities forums. You will find tons of info over there as many of us with children on the spectrum post info and trip experiences etc. There is a lot of iformation out there I would take your time in reading, ask lots of questions and hook up with other parents as they are the best resources for information.

 

[tmli]

My ds has also been recently diagnosed with AS. Like you we've known he was different, we have had numerous tests and diagnoses of many different things. I also believe my dh has AS for many of the same reasons as you....my only advice is hold on it's a bumpy ride. However it is a ride filled with much joy and laughter and stress and frustration. Surround your self with good professionals, support for you and a good education team who have your sons best interests at heart. These things are easier said than done but are possible. (so they tell me)!

 

[CRB#33]

Having put a name to your son's condition is the best first step. There is more and more information out there today as this sydrome becomes more and more common. Teachers are learning more every day about the best ways to educate these children. There's a never ending flow of research and documents. It's hard to keep up.

Everyone here has given some great info and I would definitely recommend that you go to some of the sites discussed to share with others in your situation.

 

[annamonte]

JESW: My DS6 has never been "formally" diagnosed with Asperger's, however, the doctor who analyzed/tested him said that he had tendencies towards Asperger's and that it may develop later.

He is extremely bright, was reading by 2 1/2... everything! His mind is like a computer. He can rattle off all our presidents, their first ladies, vp's, date and place of birth.. you name it. He is considered almost genius...

However, he has a tough time socially. Can't adapt to changes of any kind very well. It could be something as simple as me taking a different route to/from school... he could freak out.

He goes to Occupational Therapy. Also, I find that his diet can affect his anxiety level. Stay away from all processed foods, NO MSG!!

Whatever the outcome of your child... it will be ok... God only gives you as much as you can handle!

Hugs and prayers going your way!

 

[melk]

Hi Jill,
I'm glad you may finally have an answer. I have a good friend with a son with Asperger's syndrome. He is very bright, but typically has problems socially. He was in a Montessori school when he was diagnosed but didn't do well there (not enough structure for him). He is in a different school now and doing pretty well I believe. He also is on medication but I don't know any specifics.

If you want me to ask her anything specific, let me know.

Take care.

 

[Poohnatic]

I want to add about the food issues.

YMMV, but when we removed food dyes and nitrates from my son's food, things improved immensely. My family has a yellow dye sensitivity, so we really kept an eye on that even before he received a DX. Now, we can tell when he's had something he shouldn't have eaten.

Good luck, and glad to see all the other parents of Aspies chiming in.

Suzanne

 

[cruisnfamily]

Do any of your AS children have a speech issue? Not in speaking clearly but in repeating of say cartoon dialogues again and again or not being able to communicate properly with you? Like they say words clearly and all but you just wonder what in the world they are talking about?

 

[s&k'smom]

cruisinfamily, DS did not speak until he was 3 1/2 and he is now 7 1/2 and every year his s/l got better. He now repeats things often and sounds it out like he is in his speech class. Funny DH and I used to wish he would speak and now that he is we joke about why we encouraged it!

 

[DoeWDW]

Cruisinfamily, my DS often speaks what we call "Chris language" and I am fluent in it. He will convey a concept using words that are appropriate if you think about them, but most people do not understand. He will mis-use cliches - last night he said "now that I got my chest off" meaning "now that I got that off my chest".

He can recite dialog from movies and shows that he's seen once. Somehow the words stick in his head a lot better than they stick in anyone else's. I'll remember the concept that someone is trying to convey but not the exact words. He'll remember the exact words but may or may not get the concept.

I should add that my DS is now 16 years old. He was diagnosed in 3rd grade with ADD and used Ritalin during school for 6 years. He's in 10th grade now and decided to not use the Ritalin anymore. He is doing well but I have seen signs of mild Asperger's and am wondering if he was misdiagnosed way back in 3rd grade.

 

[chager]

It's interesting that I saw this thread today. My best friend and I were just discussing AS last night. She is teaching a child with AS this semester. The only issue she is having with him is his mother. Evidently she has stated that he can not be disciplined in any way!! This child just told a sub that he hopes "she burns in hell" and walked out of the classroom. (The leaving the class thing has been an issue often if I remember correctly) He is very bright and knows he wont be disciplined because his mom will throw a huge fit!!
We also talked about the little girl that lives across from me. She is also Dx'd AS. She is very sound sensitive and sometimes has social issues. She was a very late talker and now always talks.(S&K'smom - your comment reminded me of this little girl. Her parents have siad the same thing. ) I think she was close to 4 before she started trying to talk.(she's 6 now) She was just Dx'd last summer. She has no special rules though reguarding behavior. She is expected to be polite and say please and thankyou. I know they have to tell her ahead of time before they do anything so she can process the change. She doesn't handle change too easily. I will say though that unless you know what behaviors to observe most people would probably not realize she was AS. She is in a special needs classroom this year but will get to transfer to our local school next year with just an aide because she is doing so well. We are all excited about that because the other girls in our little group all start school next year and they will all be able to ride the bus together. ( I am the only person in our group that doesn't have a 5yr old DD. )
Anyway I would say just read read read and find out everything you can. I remember reading an article about AS a couple years ago that focused on one family that had 3 children all with AS. They were varying degrees from severe to mild and it talked about all the daily challenges they faced. If I can find it again I'll post a link to it.

 

[Dan Murphy]

Just wanted to add my good wishes and prayers, Jill, for your son, along with all the others who have responded here as having been touched by this or similar situations.

I find it so wonderful to have a resource like the DIS, and the Net in general, to make our world so much smaller and informative. I am always amazed by how great that is. Again, my best.

 

[kwood]

Jill, I too have a 8 y/o with A/S. He is very bright, sweet and a real love. He his my one and only. Things are soooo much better after we can understand him and how he works. Meds do help but I really belive what has helped most of all is our love and understanding. Read what you can, talk to his teachers and make sure you do what works for you and him. Every kid is different and not very thing works for all kids.


Best of luck. Hope to hear from you.