Hi everyone. I have an 11 year old who was recently diagnosed with Asbergers Syndrome. At an early age, he had been diagnosed with ADHD and also a language-related learning disability. He did technically attempt to speak at a normal age, but with difficulty and underwent some speach therapy as he was hard to understand. He has had and continues to have difficulty with reading. I was previously told that he definately did not fall into the Autistic spectrum, but we have always felt that there was another component to his situation other than the ADHD. He has always had a very bad temper and is prone to severe tantrums, which have decreased in frequency over the years but the intesity remains. When he gets really upset, he is extremely hard to calm down.
After receiving this diagnosis, and spending some time reading about this online (I have ordered some books as well), I am somewhat confused. There are definately some characteristics that seem to fit like a tee like the social awkwardness, communication issues, and reciprocity in conversations. He has a very hard time making friends and is seen as odd by other kids. He often misinterprets or overreacts to other kids actions, and then becomes angry. He has a lack of coordination that has caused him to have a hard time with sports. He also had an odd speech pattern (flat and kind of blends his words together) and tends to speak unusually loud.
However, there are key characteristics based on what I've read that my son does not exhibit. Specifically, while at times he does tend to get fixated on certain things, he does not have one specific interest that he focuses on exclusively. He will usually get interested in something, like cartooning, and then be obsessed with it for a while, but then he looses interest and moves on. Usually his fixations involve obtaining things related to what he is intersted in. But, I have seen mine and other people's kids act the same way. He certainly doesn't attempt to memorize facts or obtain large amounts of information about things. The second difference from what I've read is that while he does have tics at times, or nervous habits like throat clearing, chewing on sleeves, etc., he doesn't do the typical spinning or flapping or other repetitive motions that I've read about. And I wonder about how the speech issue as far as his delay in development and also the reading fit with this diagnosis. Finally, he does have a funny sense of humor and this has been commented on by many people, usually adults. His teachers tell me that the kids don't get his humor, but the adults do! He can, and does, frequently use sarcasm as well, and seems to understand when others use it.
I understand the each case is probably unique, but some of the key pieces don't seem to fit. I really would like to understand what is going on with him so I can figure out how to help!
There is a high degree of variability in the presentation of Asperger's. I was not diagnosed until I was 25. I have many symptoms, and enough that I fall into the moderate to severe category, but I am still missing some of the symptoms.
I never did much of the flapping/spinning kind of thing. My replacement for that was shaking my leg. Which many people do on occasion, so I guess it's a more socially acceptable thing to do. Fiddling with handheld objects also fills this role.
As for special interests... I have definitely had an anatomy/medical special interest for pretty much my whole life. But it definitely didn't consume me as a child. I would read about diseases in the encyclopedia (in the days before the internet!), and I would read medical-themed books. But I would also read a ton of other topics, and I never really went into monologues about it. I absolutely never sat there and memorized facts. I do have a good memory for random facts, but it includes all kinds of facts, rather than a complete inventory of the NYC train schedules (why is it that they always use trains as an example???).
And it is entirely possible for people with Asperger's to have a sense of humor. When I was young, I told all kinds of jokes, made wordplays, and used sarcasm. It is absolutely untrue that people with Asperger's don't understand sarcasm. Sometimes we miss it or aren't sure if somebody is being sarcastic or not, but we certainly understand what it is and can usually use it appropriately. Actually, some people with Asperger's are very good at making wordplays and jokes based on words.
They also talk about kids with autism spectrum disorders lining up their toys in a row. Now, I never did that. But I alphabetized my books and cassette tapes, and I spent hours arranging my crayons in a rainbow based either on wax color or paper wrapping color.
Not knowing your son, I can't say whether he's got an accurate diagnosis, but it's entirely possible that he does, even if he doesn't seem to quite fit everything that you read about. But there are lots of different manifestations of the symptoms, and some people might not specifically have all the symptoms. It's really about getting to know your son's own peculiarities and working with them. Having a formal diagnosis will get you access to services through the school like social skills building, speech therapy (not just for pronunciation, but for conversation), and physical/occupation therapy to improve coordination and deal with sensory issues.
Plus, having a diagnosis will be a great help to him. To know that you are not crazy, and that it's not your fault that the other kids don't like you... This will do wonders for his self esteem and mental health.
I am very iterested in the school services issue. My son currently has an IEP that gets him help with his reading/writing and also he sees the social worker to help with emotional issues. This was all based on prior evals not the current Asbergers diagnosis. The therapist who diagnosed him suggested I might even consider redoing his IEP at this point to address the Asbergers issue. Do the schools have social skills building? That would be so wonderful! I will have to see what is available. Even before I had this diagnosis, I had told his social worker at school that the only real way I could see him improving his social interactive skills would be with some sort of supervised play or social group. He can't seem to transfer the things they talk about to real life situations.
1. This is a very personal decision. I would definitely recommend telling your son at some point sooner rather than later. How you tell him and your other kids depends on their age and ability to understand. Like how you would use different words to talk to a 4 yo vs. a 10 yo about getting their tonsils out. You probably want to check out some books that address this issue before diving in blind. I can't really say much about it, since I wasn't diagnosed until I was an adult.
2. Absolutely get the IEP redone. You have an advantage that you've already got one so you know how the process works. Again, check out the books and the internet for ideas. I've read (and it makes sense) that you should find out what's available and reasonable, and go in with specific things you would like to see in his IEP, rather than telling them the diagnosis and relying on them to suggest interventions. Because you mention that when he gets upset he can't calm down easily, one thing you might consider is a plan for if this happens in class. Usually there is a quiet area where the kid can go and be alone until he gets it together again. If you're incredibly fortunate, your school will have a sensory room for such kids, with swings, beanbag chairs, etc. for them to use.
Sorry I can't be more help, but I really have no experience with school issues in children, as I never even had an IEP for any diagnosis, nevermind the correct one.
My son is eighteen and was diagnosed with Asp. when he was 9. He has a dry sarcastic sense of humor also, so do a few of his friends who have Asp. One of the best things for him socially was to get with other kids who have Asp. also. They just seem to get each other. The school can't tell you which other kids have it (privacy issues) but if he is getting services at school there are probably a few other kids in the group that have it also. Tell him to get their phone #'s so they can do things after school with them. Talk with the parents about whats going on with your kid. I drove and picked up my son from school from 4th grade until part of 7th grade. The bus was just too much for him. It would put him on edge in the morning and then coming home. I noticed a big change when he was not subjected to all that noise and closeness on the bus.
Yes, have his IEP updated. A few of the things my son had: more time for tests, can leave class room for a quiet area to do work(Library). He was horribly distracted by slightest noises. He did some tests orally for a while because of poor hand writing. He had sessions w/Physical Ed teacher to "pre-teach" some of the regular activities because of his clumsiness. Able to use computer for doing class work. Not marked down for art/handwritting, Art=grade of effort rather than outcome. Daily log that teacher and parent can look at. Made up a simple check off section with space for comments. The teachers and Special Ed people may be able to give you some suggests also. My son hated writing anything, when he started using a word processor/computer (it was a small lap top with only word processor capabilities) his writing took off, was a really big change. Have Special Ed people help pick out which teachers would be best suited to your child. My son did best with easy going funny teachers.
Every kid is different you just have to find out what issues are and try and have accommodations that he may need. It takes a while to figure that out and not all teachers are helpful.....
Cathy, your post hits home in many ways. The writing has been a huge issue, but I've always thought that it was a motor issue, and not a lack of ideas! If he could only get his thoughts onto the paper, he'd be a great writer. Also, the bus...UUUUGGGH! All evil stems from the bus...'nuff said!
Since my last post, I've had a great deal of success in getting resources and support already at school. I contacted the school 5th grade councelor right away, and she has talked to the teachers both in his class and the resource room. We live in a great school district with wonderful teacher and support staff, fortunately. At parent night, his new teacher (who by the way is pretty easy going and very funny) pulled me aside to tell me she really needed to give me some encouragement. She told me she has 3 nephews with Asperger's and that she understands the condition well. She told me of their successes, and emphasized that she LOVES working with these kids! Can you imagine a better situation for him? Then, I talked over the situation with the resource room teacher who will be working with him on language arts work. She said she really focuses a great deal of effort on getting the kids working on a key board. She also said that she has even used voice recognition software in the past with some kids that have trouble keying to get them writing! She is also going to have him watched by the speech pathologist at the school, which is another concern. She doesn't really feel we need to do the IEP over, although it is our right. She seems very committed to doing what ever it takes to help him, so I think I'm going to roll with it for a while.
Finally, the school social worker and the 5th grade councelor are going to team up and lead a "friends group" for the kids, as we apparently have several kids in the school with Apsergers. It is a large 5th/6th grade school with 500 kids in it, so I guess there are maybe 15 kids they know of that have been diagnosed with it, 7 in 5th grade. I am also looking into trying to put together a group for parents because I really need to have some people in my life that I can talk to about this stuff. My friends have been great and supportive, but they can't really understand what we've gone through, can they? While the school can't release names as you said, they are willing to let me put together an invitation and post it in the PTO newsletter. So, things are looking up and I'm feeling much better about all of this. I'm feeling very fortunate at the moment.
Sounds like things are going well. Just to let you know things will get better. Also let him know what is going on with him. I had my son read some books about Aspergers. There are some written by kids from their perspective that are good, sorry I don't remember the name of the books. My son did much better in Jr and Sr High. I think him maturing more and being more comfortable with himself helped. He liked having different teachers. I think he got bored and irritated by having the same teachers and students in the same classroom all day so Jr and Sr high was much better for him. He started going to a 2 year college this year and wants to go on to a 4 year college. He has always been outgoing but did have trouble making friends. He is really enjoying the more open social aspects of college. I didn't think he would ever get his drivers license but he did after almost 2 years of driving with mom and dad on his permit. There were just too many distractions at first but has gotten better. Will not drive on the busier highways yet, I don't think he is ready for that, which is fine with me. A few of his friends with Aspergers that graduated H.S. last year are still getting some classes trough the school district, they were a bit more affected by Aspergers, as you will find out there are many different levels under the Autism Spectrum/Aspergers Spectrum.
About the hand writing problems. I did find something about it, never really got him diagnosed with it, Dysgraphia. It apparently causes problems with getting ideas down on paper because of the difficultly between mind and having to put ideas down on paper with handwriting. He has slightly overcome the mind to handwriting issue but always does much better using computer to put ideas down on paper, it just came gushing out when he started to use the computer. He even wrote page after page etc of these crazy stories when he started to use computer for writing. I strongly suggest you get him started using it at home and in school.
Even answering questions on worksheets from school he did better. There was never enough room on the worksheets for him to answer questions.
Also, sometimes they just don't understand the questions the teachers are asking sometimes. Because of him literal thinking he would get things wrong.
Example on a math questions:
Do #15 math problem.....his answer was : Done.
I of course realized his answer, Done, meant he did the math problem#15 in the workbook. I had to explain to him he needed to write down his answer.
He of course said why didn't they then ask for the answer, the instructions were just to do it. He was not being a sarcastic or anything. He just couldn't see what everyone else saw because of his literal way he read the question.
Be sure teachers are aware of this. If they see any work where the answer to questions in tests are just not right they need to speak with the child about this rather than just marking it wrong, exlain it to him so he can learn from his mistakes. (or are they the teachers mistakes for not being clear)
I am wondering who diagnosed your son as having Asperger's Syndrome? A therapist, is not qalified to make such a diagnoses> the therapist may conclude that a child may have the characteristics of this syndrome, and may fall into the catorgory of the austistic spectrum. However , not make the true diagnoses.
I bring this up to you, because this may be why you are confused at the diagnoses in itself . Your child needs to be seen be a professional who is qualified to diagnose. A developmental Ped. , or child Neurologist. A psychatrist might be able to diagnose , because it is Asperger's disorder, however Autism is considered a developmental disability, not a mental health disorder, many psychatrists won't see a child who has autism, however will for Asperger's.
I would reccomend , getting into contact with your local regional center. They have Dr's especially trained to diagnose. i also found out recently that the school district is not even able to diagnose a child either, positively . They can , however start IEP's , and added support services when the child meets certain levels of criteria , under the law , and rights to a free public education, to all children.
I'm an adult with a recent diagnosis of aspergers. I too mistaken the idea of focusing/fixating exclusively on one thing as not being a part of my behaviour. What I do though, is skip around gathering unnecesary information which tends to present itself as knowledge acquired duirng a short span when in fact, it wasn't. I'd say i'm compelled to gather information based on the 'whys and what's' floating around in my head. I think that the way fixations is spun in researching aspergers falls short of explaining what the fixations mean to the particular individual and the purpose of the behavior to the person.
As for the sense of humour, I believe that some people with Aspergers are able to reflect behaviours they learn. They learn to 'perform' in ways that are socially acceptable. I've found that once the audience, setting or mood changes, it's difficult and becomes impossible to perform the behavior...it's like a skill you loose that you have to learn again through repetitious interaction.