RE: Kids w/ Classic Autism, PDD-NOS & Speech Delays

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I would say that if my older son had not been worked with so much starting at an early age and gotten on meds, he might have ended up like one of the characters in the movie--more like the 16-year-old Japanese teen who is not featured in the trailer. Expressing him self through art but not verbal and having a lot of issues.

The older of the two main subjects of the documentary is 52 and was placed in a public institution at age 8, where he received no help. The other man was allowed to sit around all day and do puzzles at school. From what I've seen here in Austin, Texas, most kids with classic austin who do not get private services or extensive help at home--just rely on services through the school system--end up about like the guys in the movie.

My older son handflaps and jumps up and down when excited, but he doesn't hit his head or anything like that and can now talk and write pretty well. He can also be overly emotional and sensitive to teasing, but he's doing really well.

I know what you mean about speaking but not communicating--that was my younger son at times before he got on meds. Constant verbal stimming--repeating the alphabet over and over and even writing it in the air--instead of communicating. My mother-in-law has bad OCD and I didn't understand how difficult that she had it until my younger son was born.

The fact that your son can talk is great. You are starting in a better place than I did with my older son, I think.

Last edited by blondeambition on 26 Sep 2011, 6:17 pm, edited 2 times in total.

Wreck-Gar: I don't necessarily buy the entire sensory integration argument, but doing sensory activities during speech lessons seems to make my kids calmer and more attentive. For instance, I usually stand in front of my younger son while he swings and read books to him with simplified, enlarged print. (I habe a big role of adhesive labels and replace boring or detailed print with my own print, in large letters, in a book with great illustrations).

I always do flashcards or picture books at the kitchen table while the kids do play dough, modeling clay, moon sand, or some other art activity.

I used to do my older son's speech lessons while he ate and bathed.

I also have educational videos playing on the TV whenever I'm busy, and there is a TV in my younger son's bedroom for him to watch videos before he goes to sleep.

My younger son is most relaxed and attentive right before he goes to sleep, and my oldest is most relaxed and attentive when he first gets up. I take these things into consideration when teaching them. My older son, for instance, gets "boring" math videos after he first gets up while he is eating his breakfast. He needs more exciting and fun activities when he comes home from school and is tired and cranky.

Thanks for the summary of the movie. You know, my son recently started writing in the air with his finger too. Or pretending to write on walls...at least it's not with a crayon!

Last night he threw a fit when I stoped the Youtube videos at bed time. He must have screamed for over an hour until he ran out of steam and conked out. I am at a loss for what to do in these situations...the only thing that will calm him down is turning the videos back on again.

That is one reason why I put a TV and VCR in each of my son's rooms. They literally would watch videos until they would pass out. I am an early to bed learly to rise person and physically cannot stay up extremely late in order to watch them, and it is not safe to have the roam the house at night unsupervised.

With my older son, I would always choose to play nice long movies (full-length Disney, closed captioning recommended) because it would take over an hour for the movie to relax him and help him conk out. Sometimes, he would get me up, and I would put another one in.

With my younger son, he wouldn't go for the full-length Disney movies. He would always go for 30 min. length Blues Clues episodes and just get me up all night long to put new videos in the VCR. I would have probably eventually gone to Blues Clues box sets with several episodes on a single DVD if I had not gone to meds.

Maybe you could get him to watch Sesame Street classics on DVD--a nice long disk with a bunch of episodes on it. I know that there are several of these types of DVDs. He would need to have a TV and DVD player and not be sharing his bedroom with anyone else.

I finally gave up and put my younger son the Benadryl, then herbal sleep remedies for kids (which can really help, especially things with melatonin, which is a favorite among local Autism Society members for their kids), and then went to the prescription med Clonidine, which works by lowering the blood pressure and heart rate.

There were days that I was a complete wreck because I had been up all night changing the videos in the VCR in my younger son's room.

Chronic insomnia is actually pretty normal among kids on the spectrum, and most parents around here eventually go to some sort of sleep aid--Benadryl, melatonin, or prescription rather than let their kids roam the house at night or stay up with them.

Running away and wondering off are also pretty common, so if he is wandering the house at night unsupervised, I would definitely use door alarms and good locks. (We have the type of locks where you need to use a key to unlock the door and keep a key hidden up high near the front door.) My older son first tried running away at age 4, and that is when we changed the locks. Luckily, I noticed right away and he only made it to the neighbor's yard.

Also, regarding sleeping, it helps my youngest to get to bed on time if I finish with feeding, bathing, giving him attention, and entertaining him by 7 p.m. each night. He can watch videos in his room or otherwise entertain himself. He loves mommy's attention and will stay up longer iif it means more attention.

My older son needs space and distraction if he is upset. Trying to reason with him or "talk things out" just makes him more upset. We used to place him in our playroom by himself when he was really upset with a children's video on. He would eventually focus on the video and forget about whatever made him upset in the first place.

Anyone know anything about Orap (Pimozide)? My wife brought the kid to a pediatrian for sleep issues and he gave us a prescrption for Orap because my son seemed very hyper.

I didn't know what it was, but I googled it and from what I read if it was prescribed to my son I'd be apprehensive about it too.

It's supposed to be the only drug approved here for autism treatment...and we brought my son to the doc for sleep issues, was expecting melatonin or something like that.

Apparently weight gain is a side effect. Not a fan of that.

You can always try melatonin first, you don't need an Rx for it. What is the sleep problem? Staying up too late, waking up, nightmares?

All three for the past week or so.

I don't know if melatonin is even available here. And from what I understand you shouldn't take it before consulting a doctor. That's why we went.

BTW he suddenly stopped wanting to sleep with us every night but this being Japan he does not have his own room. So he's been sleeping on the couch. I assumed this was a good thing, when we move back to the US we will buy a house and he can have his own room.

I tried melatonin briefly but didn't notice any difference, I didn't give it much of a chance though - it's not like a sleeping pill, and a whole lot less scary than what your doctor prescribed. I only gave my son 1mg, the pill had no flavor and dissolved instantly so I tried putting it in his drink at night. I think I only did it the once and tried it on myself for a few nights but didn't notice anything. I'm so used to being up all night.... I find he sleeps best on days where he gets out and has a lot of physical activity at the playground, that usually wears me out too though. And having a favorite TV show on before bed prevents nightmares for us, and if he has a night terror - the same thing, if I turn on a favorite show he snaps out of it. I can't imagine sleeping with my son, we've tried and his behavior makes it impossible even when he was a baby.

http://www.drugs.com/sfx/orap-side-effects.html

This drug is an atypical antipsychotic like Risperidone or Abilify. It has a high potential for sedation. If taken at night before bed and it wears off by morning--fine.

Here, of course, you can buy all sorts of vitamins and herbal remedies at the regular drug store, grocery store, some place that specializes in herbal remedies, or over the net (Amazon.com or websites that sell vitamins and nutritional supplements). Melatonin is available through these locations or as a primary ingredient of many non-prescription sleep aids. No, it does not work as well as prescription meds, but it is strong enough for some people.

The deal with atypical antipsychotics is that they are not really for obsessive compulsive disorder. If OCD symptoms and anxiety are the main issues, an SSRI anti-depressant (Prozac, Zoloft, etc.) will more directly affect these symptoms with fewer side effects. (They also improve the mood.)

My older son was on Abilify for a while, and it kind of dulled his personality. This is a common complaint with the antipsychotic drugs--the patient becoming somewhat "zombie-like." If it helps your son sleep at night, though, and works for him, then, of course, go for it..

Here, Abilify and Risperidone are FDA approved to treat irritability caused by autism, and a lot of people are happy with these drugs so I don't want to criticize them too much.

I have a pediatric psychiatrist handle my sons' meds. I don't think that my son's pediatrician would be comfortable handling psychiatric medications.

Also, I would probably keep in contact with the doctor regarding questions and complaints rather than just discontinuing the drug prescribed if side effects occur. Sometimes side effects can be reduced by adjusting the dose or the doctor will try another med if the first one causes unpleasant side effects.

It's supposed to be a two week trial. He just took the first one. I will report here what happens.

Ok. After only a day on the Orap (which I found out is only FDA approved in the US for kids 12 and over with Tourettes ) his behavior is much improved. Went to sleep at a normal hour (10PM, normal for him anyway), and a lot less preservation over letter and numbers. Answering more questions, and imitating more videos. He saw a rock video and grabbed a couple of long-ish legos and started drumming on the table!

Great! It sounds like this is the drug for him.

Wonderful, I hope you continue to see positive results!

Are any of you familiar with CHARGE syndrome? Probably not - when I searched the forum out of 56,417 members it's only been mentioned twice in passing on here even though autism-like symptoms are common with it.... I came to the realization yesterday that I may have a very mild case of it or something very similar (after finally learning the proper name for a birth defect I had it opened up a Pandora's box of information) and was wondering how the children of parents with mild CHARGE syndrome are affected. I was able to find a couple forums for the disorder but they all only had a few posts and were apparently abandoned. I know I should ask in the main forum....