Kevin's Watch

:::hoping I started this thread in the right place:::

I mentioned in my introduction that my 11 year old son has a lifelong condition called asperger's syndrome (AS). Matrixman asked me to explain what it is over in the Thomas Covenant forum but I was hesitant to post about it there, figuring it was too off topic.

There are a lot of web sites that talk about AS, but I don't agree with the description on all of them so I love to educate those interested to the best of my ability (I am not an expert! I'm just a Mom who has read articles and asked questions of my son's physicians and therapists) about AS and other autism spectrum disorders (ASDs).

I am sure everyone is pretty aware of classic autism. Although SRD blatantly states in the GI that Jeremiah is not autistic after the bonfire, his withdrawal from the outside world and behaviors come pretty close to what is perceived as classic autism.

The autism spectrum covers a wide range of neurological disorders. They range from what is called the 'low functioning end' with classic autism to the 'high functioning' end, which includes AS.

AS and High Functioning Autism (HFA) are classified by many experts as one and the same. I, personally, don't agree. I have met many children diagnosed with one or the other since Beorn's diagnosis 22 months ago, and there are definite social interaction differences. At first I thought it was each individual child, but then I noticed those diagnosed with AS nearly always interacted one way, and those with HFA interacted the other.

:::shrug::: They are close enough to each other for the diagnosis to intermingle I guess, but if I can see differences I hope physicians are not givng children the worng diagnosis, as I do feel others who are told of a child's diagnosis make assumptions regarding the child that it can take a lot of work to undo.

For my son Beorn, AS manifests itself in his giftedness and his lack of social skills. I don't mean the typical pre-teen social ineptitude. While Beorn doesn't ever present himself in a physically aggressive manner, when he meets an age peer, within 10 minutes of meeting him the child is pushing him away or asking an adult to keep him away from them. And this has been the case since he started school.

Beorn doesn't understand personal space. He stands way too close, and once he's comfortable with you, he starts leaning on you, or giving you hugs without asking. No reminders outside of the situation helps. He will stop if we are right there to interfere, but in a real time situation everything social we or his therapists talk about goes right out the window.

Beorn also has a classic sign of AS, which is perseverations and a problem with pragmatic language, which also is a reason other children get tired of him.

His preseverations have ranged from Harry Potter starting in kindergarten to Japanese anime (Pokemon, Dragonball Z, Dragonball GT, Yu-Gi-Oh) to any video games. What is so different from other young boys? With Beorn, if he is in a conversation with you, within five minutes somehow the topic of discussion gets manipulated to one of those topics. He will respond to direct questions about other topics, but won't expand upon a topic on his own. Only if it is a current perseveration, and then you can't shut him up, which is what turns off other children.

Physically, a comorbid condition of AS many times is Sensory Integration Dysfuntion (SID). Children with SID can seem to suddenly react inappropriately to the smallest things. What has been found is that children with SID can't tune out sensory input, and unexpected touch, or background sounds like a humming of a florescent light ballast, can build up frustration without them knowing what it is that's causing it.

Many children with AS suffer low muscle tone, so they can't find an outlet in athletic games to relate to their peers. And it can affect handwriting issues as well. Both physical and ocupational therapy can help, but AS children are still typically constantly bullied or shunned.

Beorn has not been invited to a birthday party since kindergarten, and no one has accepted invitations to his parties since 2nd grade. He has no friends, although he thinks everyone in his class is his friend since his current school keeps a tight control on bullying. But, he is never invited to play with any classmates, and gets no telephone calls other than from family and family friends.

However, put Beorn in with 4 and 5 year olds, or with adults, and they all think he's the best thing since sliced bread. He's very patient with little ones, and adults are amazed at his knowledge and politeness. This is also typical of AS children.

For the last six months or so, the American media has been focusing on the 'epidemic' of new autism cases. Personally, I think diagnosis means have improved, and awareness is growing, hence an increase in evaluations and diagnosis. AS was not even listed in the DSM-IV until the 1990s, and most pediatricians didn't hear of it until the 'aughts'.

That's all I can think of for an initial post. Please feel free to ask any questions. And, if you should know anything on the subject matter, and feel I represented something incorrectly, please feel free to correct me.

Menolly wrote about Sensory Integration Dysfuntion. This is highly interesting to me as we suspect that one of my students has AS. The parents won't admit this and his IEP almost says so but carefully dances away from the issue. Justice is going on 12 and has the same type of obsession with Bionicles (he knows it so well you'd think he was raised on their "island", Pokeman and Yu-Gi-O--he's very intelligent, a total loner and can get very depressed at times. One of his electives is reading to the SLP kids (MR/CP) and they absolutely love him. One of the things I have to do with him is to give him breaks while he's working and keep distractions away from him and he has to frequently give himself time outs so he can meditate and calm himself down--and yes he does get upset for reasons I can't fathom so the SIDs explanation fits right in.

my older son is very gifted (they tested him at school once and said his IQ is really really high -- but exactly how high is my secret alone -- he doesn't even know, and if I have my way, will never know )

he has always been somewhat anti-social with his peers, as with the exception of sports (and thank God for sports) he has more in common with adults (he started reading college history text books in about third or fourth grade and often knows more than his teachers in subjects he's interested in)

he's very patient and good with young kids, and is seriously considering education school rather than architecture and/or engineering school (he's been considering those for years)

starting in seventh grade he was subject to a lot of extreme bullying, and developed clinical depression as a result

oh, and when he was in kindergarten, he had occupational therapy for his poor small motor skills (writing, cutting with scissors, etc.)

a lot of this is also true to the kids with the syndrome being described by Menolly -- but his problem is being too far off of average and a lot of what she said (the extreme sensitivity to the senses, etc do not fit at all)

its just amazing and tragic and sad how kids can treat other kids who are different than they are!!!!!!!!!!!!!!

anyway, great post Menolly -- very interesting!!!

Beorn has not been invited to a birthday party since kindergarten, and no one has accepted invitations to his parties since 2nd grade. He has no friends, although he thinks everyone in his class is his friend since his current school keeps a tight control on bullying. But, he is never invited to play with any classmates, and gets no telephone calls other than from family and family friends.

starting in seventh grade he was subject to a lot of extreme bullying, and developed clinical depression as a result

Bullies! I hate them. I still hold grudges against the bastards that bullied me, and that was 20 years ago.

Menolly, thanks for starting this thread, it's very informative!

danlo wrote:Menolly wrote about Sensory Integration Dysfuntion. This is highly interesting to me as we suspect that one of my students has AS. The parents won't admit this and his IEP almost says so but carefully dances away from the issue.

Oh this is so sad! Do you know if Justice was ever evaluated at least? For what reasons does he have an IEP? Beorn initally got his IEP for gifted/OT (for handwriting issues)/Speech. He wasn't evaluated for AS until the begiinning of 5th grade, although I had requested testing in February of 4th grade after reading an article in Parade Magazine about AS.

However, once we got the AS diagnosis, adding Other Health Impaired to his IEP was a simple matter. I have been told that many school districts will not begin an IEP for AS or SID and insist on a 504 instead, which i think is a shame.

How does Justice do on standardized testing? Once we got the AS diagnosis we had tested in a small environment and transcriber for the written portion added to his IEP. So far, he hasn't needed to use either, and has done well on the FCAT.

danlo wrote:Justice is going on 12 and has the same type of obsession with Bionicles (he knows it so well you'd think he was raised on their "island", Pokeman and Yu-Gi-O--he's very intelligent, a total loner and can get very depressed at times. One of his electives is reading to the SLP kids (MR/CP) and they absolutely love him.

Paul absolutely loves Legos, and tried desperately to get Beorn interested in them and Bionicles. But Beorn's lack of fine motor skills effected his ability to 'build' things, and he refused to do them due to frustration.

Does Justice build Bionicles? Or is he more interested in the stories about them?

danlo wrote:One of the things I have to do with him is to give him breaks while he's working and keep distractions away from him and he has to frequently give himself time outs so he can meditate and calm himself down--and yes he does get upset for reasons I can't fathom so the SIDs explanation fits right in.

:::nodding:::

This is very, very important for kids with SID. It is written in Beorn's IEP that he can leave the classroom, without even raising his hand to ask permission, for a sensory break in th guidance counselor's office whenever he feels the need. Again, it is something he has never had to use, but the option needs to be in the IEP.

Does Justice have a place he can go jump on a trampoline, or run, or anything similar at these times? The SID sites on the web explain this, something about vestibular or other things that the movement helps focus.

Here a few sites that might help:

Sensory Integration dysfunction
the Out-of-Sync Child a terrific basic book on SID, but applies more to the pre-school set.
Raising a Sensory Smart Child
Sensory Smarts a wbsite by one of the author's of the above book

Please keep in mind that many symptoms of ASDs overlap. Until Justice gets an evaluation, whether he has AS, or HFA, or perhaps even Fragile X Syndrome (diagnosed only through genetic testing), we can only guess at what affects him, and if we do guess wrong are there any possible harmful consequences to him by the way he is treated?

I will say getting Beorn's diagnosis was a relief to me. For the longest time I felt guilty to have that reaction. But Paul and I took so many parenting courses, thinking Beorn was shuned because of something we were doing wrong with our parenting skills, and nothing helped. Getting an answer as to why Beorn marched to a different drummer, and being set on a path that we hope will help him, that has nothing to do with our parenting skills, is a blessing.

If there's anyway you can do so, perhaps you can have Justice read Freaks, Geeks, and Asperger Syndrome: A User Guide to Adolescence. The author was a teen in Britain with AS, and his unique outlook on his condition. I suggst this because in one section, the author, Luke, discusses whether or not a child should be told about his diagnosis. To parapharse, since I don't have the book in front of me, he says being told was a relief. He always felt the world was different, and he was the normal one, and having a name of a condition he could read about and learning how it affected him helped him realize his behaviors wasn't something he was too stupid to control. He simply ses the wrold differnt than most people.

You mention depression. Thankfully, this hasn't happened to Beorn (yet, it still can). Some posters on my Neurological Disorders forum feel in adolescence is when these children really begin to notice their isolation form their peers. Without knowing what is going on, they truly can feel they are pariahs. I have heard suicide among diagnosed teens who have not been told of their condition is very high.

For a lighter note on AS, Justice may enjoy visiting The Institute for the Study of the Neurologically Typical. It was written in frustration by an aspie, but done with dark comedy tat those who understand will appreciate.

duchess of malfi wrote:a lot of this is also true to the kids with the syndrome being described by Menolly -- but his problem is being too far off of average and a lot of what she said (the extreme sensitivity to the senses, etc do not fit at all)

As we say on the AS forums I frequent, "If you've seen one aspie, you've seen one aspie."

The syndrome manifests itself in varying degrees per individual. I forgot to mention Beorn's inability to make consistant eye contact. With therapy, he has gotten better, but he says when he makes eye contact he concentrates so hard on maintaining the eye contact, since it is not natural for him that he can't listen to what the person is saying.

And yet, a poster on the AS support board in the Parenting forum on AOL says her son was misdiagnosed for years becasue his eye contact is too good. In every other way, he fit a description of AS, but he had good eye contact, so most specialists said there was no way he was an aspie. He was finally diagnosed by one of the major research centers at a university out of her state. And, he was diagnosed as AS, butr with the ability to maintain eye contact.

Other than his giftedness, and the bullying he was exposed to, does your son struggle with anything that you would like to get answers for? You could always request a evaluation for any ASD, and if they come back negative you're no worse off, but if they come back with a diagnosis, you'll have an idea of various paths to pursue.

duchess of malfi wrote:anyway, great post Menolly -- very interesting!!!

Thanks! (in a good way)

Justice does yoga and pushups and this tends to help him. His IEP says Emotionally Disturbed and Depression with an ADHD diagnosis thrown in. He's on a bunch of meds and one of them gives him rashes. He's very forgetful when it comes to mundane things. Interesting you mention OT as his handwritting strays unless I make him focus on it. The OT specialist says that once a child passes 2nd grade his/her nuero-motor skills cannot be corrected. He has theatened to kill himself twice...

Sorry, what's an IEP?

Individualized Education Program, established by a multi-disciplinary team including teachers, admin, psych eval specialists and related services providers (i.e. social worker, occupational therapist, speech/language pathologist), parent(s)/guadian(s) and student. They are required in Special Ed.

danlo wrote:Justice does yoga and pushups and this tends to help him. His IEP says Emotionally Disturbed and Depression with an ADHD diagnosis thrown in. He's on a bunch of meds and one of them gives him rashes. He's very forgetful when it comes to mundane things.

If he is AS, there currently is no medication to treat it. However, ADHD can be co-morbid with AS. Many aspies also have high anxiety, and take anxiety medication.

danlo wrote:Interesting you mention OT as his handwritting strays unless I make him focus on it. The OT specialist says that once a child passes 2nd grade his/her nuero-motor skills cannot be corrected.

If he focuses though, would you call his handwriting legible? Beorn writes much better in cursive than print, but for most things he uses a laptop that we had donated by an organization here in town.

The school board refuses to put the laptop into his IEP though, because they say should it break down, then they are responsible for replacing it. But his school (he attends a public charter school which we absolutely love) allows him to use the one he has.

Beorn has a difficult time putting thoughts on paper, again unless the topic somehow brings on one of his perseverations. But, even then, he has trouble organizing his thoughts. Paper graphic organizers did not help him, but a graphic organizer software program called Inspiration has been very helpful. However, I am concerned that he'll get used to using it, and then not be allowed to use it when he next takes the essay portion of the FCAT. I have a year to work on it though.

danlo wrote:He has theatened to kill himself twice...

:::sigh:::

The parents really need to try and give answers to Justice.

dlbpharmd wrote:Sorry, what's an IEP?

danlo wrote:Individualized Education Program, established by a multi-disciplinary team including teachers, admin, psych eval specialists and related services providers (i.e. social worker, occupational therapist, speech/language pathologist), parent(s)/guadian(s) and student. They are required in Special Ed.

You explained that well, and a lot more succinctly than I would have.

A great site to learn about IEPs, and the right of the student, is at Special Education Law & Advocacy - Wrightslaw

The parents really need to try and give answers to Justice

The parents are total idiots and in total denial, sorry, but it's true.

danlo wrote:The parents are total idiots and in total denial, sorry, but it's true.

Sad.

danlo wrote:

The parents really need to try and give answers to Justice

The parents are total idiots and in total denial, sorry, but it's true.

In my experience in working with young people who have mental health diagnosises, the parents are just like that far too often.

In working with approximately 20 young people, I would have found maybe three or four normal parents or sets of parents. The rest were too stupid, or worse, too self-centred to be of any use to their kids.

My experience with Aspergers is rare though, having only worked with one young girl for a weekend while she was on respite from her usual foster placement.

My 9yo son was diagnosed with AS when he was 5, just before starting kindergarten. His k teacher was a Special Ed person who we knew slightly from a pre-school we had tried him in the year before, so she sort of knew him. (She didn't know him extremely well, because it didn't work out. We could never leave him alone without him crying non-stop until we went back to him. Which is an improvement over the previous year, when he did lots of vomiting and had lots of diarrhea when we left him.) That all worked out great. He started visiting a mainstream classroom with the aide, then she's take him and leave him, then he just went by himself, then they just moved him into that class.

Danny just finished 3rd grade. His teacher this year was the first he's had that was truly willing and able to deal with him and communicate with us. What an extraordinary difference it is to have someone like her!!

Just before school ended Justice reported that his dad was smacking him hard in the face whenever he forgot to do something--I was legally obligated to have his social worker report this to the state's Children, Youth and Families Division.

Fist and Faith wrote:He started visiting a mainstream classroom with the aide, then she's take him and leave him, then he just went by himself, then they just moved him into that class.

Danny just finished 3rd grade. His teacher this year was the first he's had that was truly willing and able to deal with him and communicate with us. What an extraordinary difference it is to have someone like her!!

That's wonderful, Fisty! Does he still need an aid? Is s/he a one on one aid, or assigned more to the classroom in general?

You are so fortunate to have had Danny diagnosed so young. In kindergarten, we had Beorn testd for ADHD, because he enjoyed watching the screen saver on the classroom computer more than supposedly paying attention in class (turns out to be related to the eye contact thing. He wasn't distracted by the screen saver, it helped him to listen to the teacher). But while he had a few ADHD traits, thy were not enough to be diagnosed with ADHD.

And no one ever suggested any other testing, so we just plodded along.

But, Beorn's AS never affected his academics negatively, other than handwriting issues. Except for art class, which is the only enrichment class his school offers and all students have to take it, he gets straight A's and has always gotten straight A's. With forewarning, he handled transitions in mainstream class (we never considered anything else for him, didn't have a reason to place him anywhere else) without a problem. He had the occasional what we call 'melt down' due to sensory overload, but of course no one could figure out why.

I was argued with by his elementary school's LSW when I requested testing after reading the Parade article: "Asperger's Syndrome is serious, Pam! It's autism! There's no way Beorn is autistic!" Huh, famous last words.

The school board psychologist who evaulated him is the specialist for the school board in ASDs. Since we are a college town, she also constantly has a psychology intern from UF with her. She told us when she gave the report on her findings that after observing and testing Beorn, her intern turned to her and said: "that was just like watching an AS training tape!" And Beorn's case worker at The Center for Autism and Related Disabilities tels me he presents as a classic case. But everyone else says he is so mild that they would never expect it. He just presents himself as a very immature, but extremely smart, 11 year old.

There are two doctors who came up with a supposed test for detecting AS (or HFA, if you see differences between the two) in infants. The Tilt Test supposedly alerts parents and pediatricians to possible developmental disorders, and they recommend all pediatricians start putting it into the appropriate well baby visit.

danlo wrote:Just before school ended Justice reported that his dad was smacking him hard in the face whenever he forgot to do something--I was legally obligated to have his social worker report this to the state's Children, Youth and Families Division.

OMG! Those parents aren't only in denial, they're abusive as well. A lot of good smacking him will do. I bet his medication is interreacting, especialy if he has a condition like AS that doesn't respond to medication, and needs to be adjusted or stopped completely for awhile.

Is there anyway to have Danny put under the care of the state for a short time, until further evaluations and proper medicating if needed can be done?

You might want to change that to "Is there anyway to have Justice put under the care..." heh

We were lucky because our nextdoor neighbors at the time have a daughter with autism. My mother had concerns, and we noticed some peculiar stuff. But the neighbors knew what was going on, so we knew to take him to a neurologist.

Fist and Faith wrote:You might want to change that to "Is there anyway to have Justice put under the care..." heh

Gack! I am soooo sorry!! I had just finished posting to you, and had the wrong name still in my head. Of course I meant Justice!!

Fist and Faith wrote:We were lucky because our nextdoor neighbors at the time have a daughter with autism. My mother had concerns, and we noticed some peculiar stuff. But the neighbors knew what was going on, so we knew to take him to a neurologist.

Very fortunate indeed.

Beorn started off both preschool and kindrgarten in Jewish Day Schools, who are notoriously known for not being willing to work with kidd who are different. At least, not in Florida.

We then found a public charter school for 1st through 5th grade. But, total student enrollment was only 88 students for K - 5th, and they claim to have never had a student diagnosed with AS. It's possible, as Beorn was diagnosed in 2004, and the school opened in 1997. so, thy had no idea what they were dealing with either.

I cannot recommend enough to have a doctor who knows what he or she is doing.

When your child is having problems -- ask everyone you know in the local medical community for names of doctors who specialize in children of your child's age group and sort of condition. If you ask enough you will begin to hear the same name come up repeatedly.

I knew my older son was depressed -- he showed this by acting out in anger, as it so often manifests itself in tweenaged males. When you have a straight A student who is suddenly flunking all of his classes and who had previously always been bright and sunny and is suddenly always angry --and throwing temper tantrums -- those are signs that your child needs help!!! It is not just a stage!!!!!

I asked everyone I knew and one name kept coming up -- a doctor at UM who had both an MD and an MSW and specialized in males ages 10-20. He believes in treating these young men as whole beings -- and treats both body and mind together.

He is wonderful.

I cannot stress enough that you find a doctor who knows what he/she is doing -- and someone who you can both trust and work with as a team for the benefit of your child.

Nothing constructive to add, but wanted to say what a great thread this was, and how interesting everyone's posts are.

--A