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post #16 of 241 (permalink) Old 09-09-2013, 07:13 PM Thread Starter
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Kenji's journey

Generally speaking a classic behavior of the ASD individual is to seek some sort of repetitive stimulation. There is an assumption that this feeds the reward system in their brain (although I have not seen substantiative research to suggest it). Often times this stim (as it is referred to) involves a proprioceptive motions, that is stimulation at a joint or muscle. The characteristic hand flap or sometimes a winding arms, etc. But because this is a spectral disorder, it can also border on trying to get cutaneous stimulation, like head banging. I have never heard of anyone characterizing this later one as associated with a reward system. Some of these can almost be seen as involuntary tics similar to those seen in Tourette Syndrome. Although the verbal tic seen in Tourette is a little different in ASD individuals. In this latter group, the verbal "tic" is often referred to as echolalia, where the person repeats a phrase or a word over and over and over. Something he or she heard - reward behavior.

This can be particularly tough on an ASD individual because it is thought to be associated with reward, it is hard to automatically suggest that such behavior should be extinguished through therapy. In the early days, we were told to work on those behaviors and I believe the schools tried to do the same. But, imagine you could not get any reward for a job well done (school work). In time your frustration may build up. And, since most of them do not have coping skills to deal with this frustration it is hypothesized that some outburst and meltdowns may be associated with trying to extinguish these stims and the like.

Of course, it also shines a bright light upon the oddity of these individuals. My son will at times skip throughout the house repeating word for word some video game review he heard on Youtube. And, even if the review was 30 minutes long he could repeat it word for word after hearing it only once. It would not make any difference if only family were home or someone came over to visit. He would conduct this activity without any sense of understanding social norms. This would happen in place of stopping for the normal greeting.

Some Autistic kids have muscle weakness along with this strong desire to stim their proprioceptive sensory system.

On thing we have found that really helps reward our son while trying to extinguish these odd behaviors, have him get on a regular "diet" of lifting weights. This puts a lot of stimulation on their joints while also building muscle. We have only been at this less than a month, and already we have seen some improvements in reducing some of his "socially unacceptable" stim patterns and even helping to reduce some of his outburst. It has not eliminated everything and we are sober enough to understand it may never, but it seems to be a good fit for him at the moment.

It fits well with our lifestyle of trying remain active ourselves (fitness wise).

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post #17 of 241 (permalink) Old 09-09-2013, 07:20 PM Thread Starter
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Kenji's journey

As another added benefit, it gives me some quality time to spend with my oldest son as we workout. Granted he may not reciprocate in conversation like your typical person might, but somewhere in there I always hope I am connecting with him.
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post #18 of 241 (permalink) Old 09-09-2013, 08:17 PM
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Re: Kenji's journey

That's encouraging about the muscle building program. My nephew just started weight lifting and I never did hear what prompted this. It's amazing what is bing learned about the brain!
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post #19 of 241 (permalink) Old 09-10-2013, 01:11 PM Thread Starter
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Kenji's journey

So moments of neurotypical response

My wife normally has to wake my son up to get ready for school (pretty typical for a teenager). He gets up and stretches my wife makes the comment to Kenji, "wow, I can see some muscles (from working out with dad)" He smiles and yesterday when we were working out, my son makes the comment, "I think I need to add more weight to my workouts"

When we do leg workouts, he usually comments that it feels good - that proprioceptive feedback.

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post #20 of 241 (permalink) Old 09-12-2013, 01:47 PM
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Re: Kenji's journey

That's great that he can see/feel he is progressing with the weight-lifting. I'm sure it is gratifying and, as you pointed out, he gets dad-time alone with you! Win-win!
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post #21 of 241 (permalink) Old 09-12-2013, 07:47 PM Thread Starter
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Kenji's journey

I don't know if this is necessarily an ASD thing however we have some RL friends with an ASD child where it is the case with her. It is just that there is not enough medical/psychological literature on the topic: Sleep

From 1.5 years of age, Kenji stopped taking naps and since that time sleep has been hard for him. Sleep, meaning that he has the hardest time falling asleep. Once asleep, he Ok, but at least twice a week we hear him getting up like 2 or 3am. It of course wakes us up. He says he just can't turn off the images in his brain and does not want to sleep with the mind movies playing in his brain. We have tried several different non-pharmaceutical techniques (even melatonin drops). Still he only gets about 6 -7 hours of sleep as a teenager. I find it alarming but not sure right now what we can do. We have seen psychiatrist about it, and often they give us many of the techniques we have exhausted. We have also been told by the pediatrician that eventually his body (as it goes through more growth spurts) will beg for more sleep, so we are taking a wait and see approach right now.
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post #22 of 241 (permalink) Old 09-13-2013, 05:24 PM
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Re: Kenji's journey

Yes Drerio, sleep is a huge issue for our son. He has been a poor sleeper since he was born.

He now does not sleep more than a couple of hours at a time, despite trying many different cognitive and also medical treatments. He says his brain just does not shut down and he struggles to quieten his mind enough to get to sleep and then just not stay asleep.

It seems Drerio, that there are some trends starting to appear here, maybe there is scope for further research into ASD that you could do.
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post #23 of 241 (permalink) Old 09-13-2013, 08:07 PM Thread Starter
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Kenji's journey

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Originally Posted by Bellavista View Post
Yes Drerio, sleep is a huge issue for our son. He has been a poor sleeper since he was born.

He now does not sleep more than a couple of hours at a time, despite trying many different cognitive and also medical treatments. He says his brain just does not shut down and he struggles to quieten his mind enough to get to sleep and then just not stay asleep.

It seems Drerio, that there are some trends starting to appear here, maybe there is scope for further research into ASD that you could do.
I have looked to see if there is any peer-review research currently looking at ASD and sleep problems. There are some studies, but no real suggestive reason.
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post #24 of 241 (permalink) Old 09-13-2013, 10:28 PM
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Re: Kenji's journey

Quote:
Originally Posted by drerio View Post
I don't know if this is necessarily an ASD thing however we have some RL friends with an ASD child where it is the case with her. It is just that there is not enough medical/psychological literature on the topic: Sleep

From 1.5 years of age, Kenji stopped taking naps and since that time sleep has been hard for him. Sleep, meaning that he has the hardest time falling asleep. Once asleep, he Ok, but at least twice a week we hear him getting up like 2 or 3am. It of course wakes us up. He says he just can't turn off the images in his brain and does not want to sleep with the mind movies playing in his brain. We have tried several different non-pharmaceutical techniques (even melatonin drops). Still he only gets about 6 -7 hours of sleep as a teenager. I find it alarming but not sure right now what we can do. We have seen psychiatrist about it, and often they give us many of the techniques we have exhausted. We have also been told by the pediatrician that eventually his body (as it goes through more growth spurts) will beg for more sleep, so we are taking a wait and see approach right now.
Have you done an overnight or 24-hour EEG to rule out hidden seizures? Perhaps he's not entering REM sleep. An EEG can pick that up too. Just a thought.
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post #25 of 241 (permalink) Old 09-13-2013, 10:43 PM Thread Starter
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Kenji's journey

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Have you done an overnight or 24-hour EEG to rule out hidden seizures? Perhaps he's not entering REM sleep. An EEG can pick that up too. Just a thought.
We talked about it, but never went through with it. It is getting bad enough to consider it real soon

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post #26 of 241 (permalink) Old 09-26-2013, 04:11 PM Thread Starter
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It is not a normal part of anything I have ever heard as it relates to ASD, but my son claims that sometimes he thinks someone is talking to him when no one is around. I fear of course that as with some ASD individuals, it is rarely about just this single syndrome that some do have multiple issues. We are keeping tabs on this one.
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post #27 of 241 (permalink) Old 09-27-2013, 11:37 PM Thread Starter
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So we have Kenji enrolled in a diploma track at our local public HS, but I don't believe he will be able to complete it. It started yesterday when in his math class a bell went off. He was startled and it drove his sympathetic nervous system from 0 - 100 in a second. He started to throw a fit and his 1:1 Education Assistant (EA) try to calm him down. This did no seem to help much. She was able to move him outside the classroom but he hit the EA on the arm. As many of you know schools have a zero policy for this stuff. They moved him to the office and called me up. He was able to calm down and apologize.

Today He was in the library and something set him off, he threw his bag across the room and fell to the ground and begin to hurt himself today against the floor. Security was able to move him to the office but he then started banging his head against the V. Principal's desk saying he wanted to kill himself. I got call, they asked me to take him home for safety reasons. So at 11am I took him home.

We have a meeting on Monday afternoon. I appears that he will best be served moving back to the fully self contained classroom. I am so depressed. I failed my son. I am a horrible father. I hate myself for not being able to find a way to provide him with the tools to survive.
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post #28 of 241 (permalink) Old 09-28-2013, 08:24 AM
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Re: Kenji's journey

I'm so sorry to hear of this development, drerio please don't blame yourself! You are an amazing parent and are doing everything possible to help him...I hope a better solution is found.

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post #29 of 241 (permalink) Old 09-28-2013, 05:17 PM
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Re: Kenji's journey

Drerio, I don't really know how to help, but just remember, none of this is your fault, and you are doing the very best you can with what is available & what you know.

Just because you tried something and it did not work (this time), does not mean you are a failure, it just means you try something a little different and keep on going.

I know it is hard & frustrating. I know what we want is parents to have a magic wand that we can wave & make everything better, but the truth is, we don't, so we work with what we have. Keep seeking information. ((hugs)) to all of your family.

BTW, regarding voices in his head, my son was mistakenly diagnosed with schizophrenia in his late teens due to those voices, but he is not, it seems it is just because of his brain that does not stop. (that is my theory anyway). The anti-psychotic drugs they put him on made him a zombie, and did not help, so he came off them.
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post #30 of 241 (permalink) Old 09-28-2013, 06:33 PM
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Re: Kenji's journey

Quote:
Originally Posted by drerio View Post
So we have Kenji enrolled in a diploma track at our local public HS, but I don't believe he will be able to complete it. It started yesterday when in his math class a bell went off. He was startled and it drove his sympathetic nervous system from 0 - 100 in a second. He started to throw a fit and his 1:1 Education Assistant (EA) try to calm him down. This did no seem to help much. She was able to move him outside the classroom but he hit the EA on the arm. As many of you know schools have a zero policy for this stuff. They moved him to the office and called me up. He was able to calm down and apologize.

Today He was in the library and something set him off, he threw his bag across the room and fell to the ground and begin to hurt himself today against the floor. Security was able to move him to the office but he then started banging his head against the V. Principal's desk saying he wanted to kill himself. I got call, they asked me to take him home for safety reasons. So at 11am I took him home.

We have a meeting on Monday afternoon. I appears that he will best be served moving back to the fully self contained classroom. I am so depressed. I failed my son. I am a horrible father. I hate myself for not being able to find a way to provide him with the tools to survive.
Drerio, please do not dispair! You are not a failure. His condition is complex and being so means you need to constantly adjust treatment styles. It sounds to me like it has been too much of a change to an environment with too many things going on. Perhaps a more gradual change is what is needed instead of jumping in the deep end too fast. My nephew has a 7p- chromosome deficiency and his behavior is not easily characterized. Im fact it is not understood like many more common issues. My SIL and BIL have had to learn by trial and error what environment works best for him. Then suddenly it will change and they need to adapt. It's a constant state of evolution. And you know what, that makes sense because we are always changing ourselves.

Be stable, loving and keep looking for what makes your son tick. You will always be surprised but you will learn many things. School administrators want to make things easy when they are not. Be rational and look for the environment that will help him the most and it might not yet be emersion to the the HS program.

Aloha and best wishes!

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