My son has Autism and it is getting worse

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AspParent
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17 Sep 2014, 10:40 am

My son, now 7 (2nd grade), was diagnosed in Kindergarten with Autism (Aspergers) and severe ADHD. He has progressively gotten worse. In Kindergarten he was in regular classes. A month into 1st he was put into a public school with a special program for Autistic kids. There are only around 7 kids in the class. He is currently on Intuniv (2mg) which seems to help with his ADHD but nothing else. He has been holding his poop now for around 2 weeks. He's been on Mirilax for a week and seen 2 doctors who say he is fine for now. He was throwing up last week though. When asked why he doesn't go he gives his usual, "It will take 5 hours to go" response. It doesn't - more like a few minutes.

His behavior at school is pretty bad. He runs out of the classroom daily. He throws furniture. He kicks trash cans. He states he hates school and doesn't want to go anymore. There is nothing more we can really restrict him on he has lost his video game privileges and no traditional discipline works with him. The other day he told me he wanted to die. Realistically has anyone just given up and give them video games to placate them all day?

He has no friends really as he cannot go more than a few minutes with any kids before he blows up and has a tantrum. None of them want to be around him anymore. He wants what he wants and he wants it right now. If he doesn't, you can be sure a tantrum is coming even if it is just a marshmallow. He lies about everything even stupid stuff that no one cares about.

He is getting worse and worse and worse. Anyone experience anything like this and can offer advice? What medication has worked for you? What is the long-term prognosis for this? We are at our wits end and honestly I see him being institutionalized at some point.



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17 Sep 2014, 10:59 am

Oh wow. When I was falling apart in school, my parents pulled me out. My issues were due to anxiety, the medicine I was on so they were giving me seizures and other kids were teasing me and egging me to do things and it got me sicker and sicker. I was put on Imaprimine (sp)and that worked. I was also on depakote to calm my body down from the seizures and that made me gain lot of weight because I was always hungry and hot all these ugly stretchmarks. Now I have all these faded whit lines to remind me of that horrible year. I also was seeing a psychiatrist too and I was nearly hospitalized for a suicide threat. It took us a few months to get me better again and I was slowly placed back in school.


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17 Sep 2014, 11:06 am

Try to take a breath. What you are describing is not "autism getting worse," I don't think, so much as your child having issues with the environment. Is he better at home, on breaks and weekends? Do you notice triggers? Do the meds have side effects that mirror anything that is going on?

It sounds like stress from what you are saying, The issues with bowel movements can be exacerbated by stress, vomiting can be caused by stress, and meltdowns can be made worse by stress. Obviously suicidal statements also come from stress.

Even though an autism class with less kids per adult is supposed to be better, it does not mean that it will be. Can you go up and observe? It won't catch everything because the teachers, aides, other kids and your kid will act differently with you present. However a lot of times you will recognize or interpret things better than staff, and better than your own kid can communicate. When my kid was in public school, I found it very valuable.

I am a pro computer/game person so I have no issues with my child using them to relax. Obviously, other people have different views on that, but I would see if some decompression time would help.

Prognosis is impossible to project at such a young age. Kids with autism have developmental leaps at different times than neurotypical (NT) kids. I think the main focus is to try to calm your child down. It is hard to make improvements when there is so much stress.



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17 Sep 2014, 11:18 am

Hugs.

I don't know how to help you, other than to say that I KNOW that is the behavior of one seriously stressed kid.

Check out the side effects on Intuniv; I know a lot of stimulant ADHD meds have anxiety as a common side effect. An ASD kid is already anxious, even if nothing is going on (teasing, bullying, too many unclear and/or overly ambitious expectations, etc). If something IS going on, most ASD kids are a raw bundle of nerves.

I realize this is going to sound like I'm channeling Sigmund Freud, but toilet issues, deliberate stool holding in particular, are part anxiety and part control (at least, that's my opinion). I will offer up, for justification, me as an ASD kid, hiding behind the couch and holding it. Grandma followed me around with a bottle of glycerine suppositories and a glass of prune juice going, "Did you go Number Two? Did you go Number Two?" And I hid behind the couch and held it.

My mother, on the other hand, really didn't (or anyway acted like she didn't) give a crap if I crapped or not. I guess she figured that my bowels weren't obstructed, and what went in would have to come out sooner or later-- she was a nurse and I guess she knew or thought she knew that I wasn't going to die of fecal toxicity from voluntary stool holding. I think she did comment a few times that it would not take so long, or hurt at all, if I would just GO, FOR THE LOVE OF GOD.

So I went. End of problem (at least, unless I was out playing and too busy or at someone's house and too scared to ask to use the toilet).

I don't have help for tantrums, or wanting what they want when they want it, or preferring control to friends.

I will say that I don't think you can, or really should, try to fix the last one. It will be totally pointless until he decides that he wants people to hang with.


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17 Sep 2014, 11:28 am

Sounds tough, but hang on in there. I've never had to deal with ADHD so it must make it harder, but we had some terrible periods but it did get better.

Using video games is not a bad thing in itself as it is a common way of letting the child escape and calm down. My son at 15 still needs it. In my experience it is important that it is not the only tool you use. The thing to realise is that traditional discipline is often not going to work, at least without being modified. A trick that worked for us to to keep punishment related to the crime as the association kept it more to the front of his mind and it also seemed fairer to him.

So for example if he stole some food, he'd not get his chocolate on 'chocolate day'. If we took away his computer game access he couldn't figure out what one had to do with the other and would kick off. Therefore, if he sneaked onto the computer during a no gaming time, he'd maybe lose an hour of gaming on his Saturday. He'd still keep his Friday chocolate.

Also we kept punishments more moderate. Rather than take away a whole day of computer privilege, even if justified, we'd take only half a day. It still makes the point as even a minute was a big deal to him, but it also kept a carrot out there to behave and accept his punishment.

Along with the school we also had a behaviour contract. This listed out all expectations from both sides as my sons sense of justice and fairness was well developed. It also listed out specific sanctions/consequences if rules were broken. Each rule had a specific sanction tied to it. It included what would happen if the school broke their rules, often some sort of fun learning activity for my son. A rule the school had for example was to give him space if he played his stressed card to indicate he was getting overwhelmed, although your son may be a bit young for that one. It also included positive targets, milestones and rewards as you can't just focus on the negative. Apart from my son getting very good at finding loop holes for us to close it worked very well for us all.

Of course this sort of thing worked for us and a lot of it is trial and error. Maybe you've tried this but I hope it might give you and idea or two to help your son and you along.



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17 Sep 2014, 11:36 am

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His behavior at school is pretty bad. He runs out of the classroom daily. He throws furniture. He kicks trash cans.


This was my son in first grade, if you add hitting, kicking, spitting, headbutting, knocking over desks, tearing things off walls, choking classmates, and attacking other parents.

We pulled him out of school when they proposed moving him into a special class with the intellectually disabled kids. Initially I started homeschooling him, but two months in I found a school for kids with Aspergers run by an autism therapy center. A year later I hired a top-notch bulldog educational advocate and he convinced our new school district (we moved) to pay for it.

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What is the long-term prognosis for this?

A year and a half later the meltdowns and tantrums are gone and the worst incidents tend to be simple yelling outbursts. Most of the time he is happy, loves school, does his work and homework, and even has playdates and actual friendships with two of his classmates. He attends cub scouts meetings, and although no one will mistake him for typical he's managing ok. So things can get much much better if you find the right place for him.

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A month into 1st he was put into a public school with a special program for Autistic kids. There are only around 7 kids in the class.


Their autism program is clearly not working for him. Is homeschooling an option? Assuming the answer is no, your next stop is what's called a "non-public" school. This is a private school for kids with learning disabilities or autism that the district pays for. You need to find out what non-public schools are in your area, determine whether any of them take kids with behavior problems, and determine if any would be a good fit for your son. I would recommend finding out who the bull-dog advocate in your area is, and having him make a case to move your son to a "more-restrictive placement" where they know how to work with him.


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What medication has worked for you?

DS had very very bad constipation on Intuniv 2mg, requiring 4oz of Miralax daily, and it also made him spacey. He had no side effects on 1mg though. (I'd say the medication is clearly the problem for your son, it's not psychological holding.) We found the stimulant Adderall XR to be very helpful, it makes him more focused and also seems to calm him. (He does still move an incredible amount even on the meds, and takes a 5 min trampoline break every half hour at school.) He's also had good results from Respiradal -- it didn't decrease aggression in the slightest, but got rid of his tendency to perseverate. (For instance, when told he could have computer time after dinner instead of right now, he would repeat over and over, "Mom will never let me have computer time," and even giving in and giving the computer to him early wouldn't stop it.) We recently got rid of the Intuniv, and kept the Adderall and Respiradal.

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There is nothing more we can really restrict him on he has lost his video game privileges and no traditional discipline works with him.


It's time to try a new approach, one where you figure out what missing skills are making things difficult for him, and work with him to negotiate solutions he can live with. Take the parents video tour at http://www.livesinthebalance.org/walking-tour-parents and read the books The Explosive Child and Lost at School by Ross W Greene. I'm still getting the hang of his method, but I'm convinced it's better than anything else I've tried.

Hang in there! It can get better.



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17 Sep 2014, 2:10 pm

zette wrote:
DS had very very bad constipation on Intuniv 2mg, requiring 4oz of Miralax daily, and it also made him spacey. He had no side effects on 1mg though.
This is certainly one possibility, and with a lot of medications smaller dose and/or tapering off as needed is better than cold turkey.

Another possibility is something like pin worms, which inflame the anus and make going to the bathroom painful and the child then puts it off. To check, the doctor might put a piece of scotch tape on the anus, wait fifteen minutes, and then look at the tape under the microscope and see if there are tiny worms.

People on the Spectrum can have a number of different gut issues. One article said that some autistic persons have too many clostridium bacteria, so maybe gentle trial and error with a good probiotic. And in general, maybe a GP with some good horse sense who's willing to try different things without fixating too quickly on one possibility. Or really, any doctor with some horse sense willing to try different things with a light touch.

And not to overly disparage worms, there have been actual medical studies that at least some persons with inflammatory bowel issues have been helped by 'helminth replacement therapy.' This usually involves asking the patient to drink a grainy solution which contains pig whipworm eggs, which only live a couple of weeks in humans anyway. This might sound counter-intuitive, but the thinking is that this helps to moderate an over active immune system. It's all the right worm in the right place.



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17 Sep 2014, 2:51 pm

Wow thanks for all the great advice! I did not know Intuniv could cause constipation that may be part of his problem. Since it is not doing much more than anything else he has been on I will talk with his Psychiatrist about changing to something else. BTW: Intuniv is depressant based and not stimulant based. It is a lot harder to get prescribed.

We have looked into autism private schools. There is one close to us that I think runs as much as $50k/year. I believe it is a 1 to 1 student/teacher ratio. If the school gives up on him, they will pay for this school through and possibly beyond 12th grade. Our school district only does this as an absolute last resort. Most people have to fight very hard for this. My son is by far the worst student in his class or in the school in general. If anyone is a candidate for going to private schools, he is. I have been suggesting it at our IEP meetings but so far it has only resulted in less complaints from the school to us. He has broken out of the school on several occasions and I have expressed my concern about him running out into traffic or just getting lost. This year in fact there is a teacher and 2 aids in his class for just 4 students. I am not sure how they cannot keep a known runner in the classroom with that ratio. His teacher will be his teacher until 4th grade. She has been teaching Autistic students for 20 years. The sad thing is for as little as he has done at school, he is where he should be for his grade level. He is so very smart.

At home he is much better than out. Mostly because he is in a controlled environment and has stuff to do that he likes. His video games, TV and toys, in that order. But as long as he is given plenty of advance notice of something with regular updates until it happens (like putting down the games) he is ok with that. If we let him though, he would play his game every waking hour non-stop. We are concerned about the video games (Mostly Nintendo DS) taking the place of, well, life. He is very happy to do nothing at all accept play his game. There is very little that will voluntarily get him away from the game. If I give him his game, I am his best friend of all time and he loves me. If I take it away I am his worst enemy and he hates me. There is no midway for him. He does not know the meaning of the concept of "compromise".

I really keep hoping that he will have a maturity spurt and start to be able to control himself. So far this hasn't happened. I can have a conversation with him about what to do and what not to do and he will pay attention, he will even repeat it back, he will say he wants to do better and that he will do better. And then some situation can arise not 2 minutes after we talk and it is like we never talked at all. He is completely and totally moment driven. This morning he couldn't get the snap on his jeans to snap and it was a crisis for him.

Thanks again what a great group - I will be visiting here often!



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17 Sep 2014, 3:33 pm

AardvarkGoodSwimmer wrote:
zette wrote:
DS had very very bad constipation on Intuniv 2mg, requiring 4oz of Miralax daily, and it also made him spacey. He had no side effects on 1mg though.
This is certainly one possibility, and with a lot of medications smaller dose and/or tapering off as needed is better than cold turkey.


Good point. Intuniv lowers blood pressure (I believe it was originally used to treat high blood pressure), and it's likely important to go from 2mg to 1mg before stopping completely -- always get advice from a real doctor before changing anything! My son went up and down between 1mg and 2mg a couple of times and I can say for certain that his constipation was directly correlated with the higher dosage.

Are you using an educational advocate? A really good one? It made all the difference in the world for us. We walked into the new district and they agreed to a complete neuropsychological workup -- you could tell our advocate was well known to the staff there. There are things that you need to be documenting now to build your case for moving to the non-public.

(Although a friend of mine managed to get her son moved to a non-public after barging into a district meeting of principals and demanding to know why her son was being denied FAPE. I've just never been that successful advocating on my own.)


Quote:
He is very happy to do nothing at all accept play his game. There is very little that will voluntarily get him away from the game.


He's under a lot stress at school. No wonder he wants to escape. We saw a lot of growth in our son's ability to handle life after he moved to a less stressful school situation.

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I can have a conversation with him about what to do and what not to do and he will pay attention, he will even repeat it back, he will say he wants to do better and that he will do better. And then some situation can arise not 2 minutes after we talk and it is like we never talked at all. He is completely and totally moment driven.


Classic ADHD. (The Russell Barkley video Essential Ideas for Parents on youtube is excellent info on this, although in his book he says not to use his behavior recommendations with ASD kids.) Since you aren't opposed to using meds, see what his psychiatrist thinks about trying a stimulant.



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17 Sep 2014, 3:48 pm

You've already gotten a lot of the key advice, but here are some thoughts I'd like to add.

AspParent wrote:
At home he is much better than out. Mostly because he is in a controlled environment and has stuff to do that he likes.


I think this comment shows your way out of the issues. Your son needs a controlled environment that respects his sensory and other needs. I cannot emphasize enough how much difference the right environment can make for a child on the spectrum. I know that many parents want to push their kids out of their safe places because real life will not always provide an appropriately controlled environment, but the trick is to do that only as a child is ready. Right now, you are getting sign after sign that your son is not ready for something he is encountering in his normal daily life, and is getting increasingly stressed about it and overloaded. Your job is to be a detective and figure out what the triggers are and then mitigate them.

An ASD adult once described their experience being out in the "normal" world as equivalent to someone running their nails down a chalk board all day. When you think about it, how could anyone behave well or learn when they are experiencing their environment in that sort of way?

Sensory issues get worse around your son's age, but I found they started to lessen once my son was a few years older. I strongly recommend you adjust your son's environment to meet his sensory needs so that he will be able to function at his maximum capacity as he learns important skills like controlling his own anxiety, preventing outburst, and otherwise getting through a day in a healthy, positive and productive way.

If you look through our parenting index your will find lots of discussions on the types of issues you are facing and suggested protocols for handling them. The ones for handling tantrums probably have the information on finding and mitigating triggers. Controlling the environment will, long run, work much much better than trying to find another medication. Doctors don't have the ability to study a child's environment and figure out how to mold it, but you do. Try that first.

Quote:
His video games, TV and toys, in that order. But as long as he is given plenty of advance notice of something with regular updates until it happens (like putting down the games) he is ok with that.


Difficulty with transitions is really common for children on the spectrum, and you've already found the solution: plenty of warning and updates. This same concept can be extended to other areas of your child's life, allowing him to get a better sense of what to expect, which in turn will help him better handle unavoidable stressful situations. It is a very positive sign that he is responsive to your warnings and updates, it makes it clear he CAN process and adapt, but just needs time and space, so see what happens if you extend the process to other areas of his life.

Finally, a quick word about lying, as you mentioned in your first post. This is a tricky area for ASD kids because they process language differently than we do. The first thing you have to remember to do is speak very literally and precisely. The question is not, "have you washed your hands?" (which can be truthfully answered yes if they have ever washed their hands in their entire life), but "have you washed your hands with soap and water in the last two minutes?" They also get very confused by the mixed messages (to them) we send on lying, because much of what we consider politeness is, in fact, to them, lying. With the result that ASD kids often conclude the world is run by hypocrites.

Of course, at 7, you also may be dealing with a normal childhood phase of inventive thinking, where in the child tells truth as they dream it to be in their heads, instead of how things really are. They tend to believe if they say something often enough, it will become the truth. I found that handling it gently was the best way out of it. They will learn as they mature that it just doesn't work that way.

Good luck.


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zette
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17 Sep 2014, 11:17 pm

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Controlling the environment will, long run, work much much better than trying to find another medication. Doctors don't have the ability to study a child's environment and figure out how to mold it, but you do.


+1. Even though my child is on meds that help him tremendously, I wholeheartedly agree with this. It wasn't the meds that made the difference, it was the change in school environment.



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18 Sep 2014, 3:24 am

zette wrote:
Quote:
Controlling the environment will, long run, work much much better than trying to find another medication. Doctors don't have the ability to study a child's environment and figure out how to mold it, but you do.


+1. Even though my child is on meds that help him tremendously, I wholeheartedly agree with this. It wasn't the meds that made the difference, it was the change in school environment.


I also agree with this. We are not using meds, and while things are by no means perfect, we are doing much better after changing the environment.



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18 Sep 2014, 6:38 pm

Do you ever talk to your child, like sit down with them and ask why they feel like they want to die...why they don't like school, what is setting off these tantrums that are probably actually meltdowns due to being overwhelmed by sensory and stress overload. Seems like he's feeling very misunderstood, likely afraid, confused and miserable. Is he getting bullied or picked on at school? Do teachers single him out? I know i suffered a lot of stuff like that going to school....or get in trouble for throwing a fit because the teacher didn't see the other kids provoking me for the 10 minutes before the meltdown by either verbally picking on me or stuff like people behind me poking me or throwing little bits of things at me.

Sounds like he really needs some understanding and to have someone really listen to him instead of dismissing it all as simple 'bad behavior' and treating it as such when seems like there is a lot more going on. No one here can say what your kids prognosis is, though being supported and having people who really care can certainly help someone thrive more.....it could be maybe mainstream public school is not the best option for him so maybe looking into other school options is a good idea. I feel I would have been better off not going to a traditional public school.


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18 Sep 2014, 8:46 pm

he sounds a lot like my daughter. we were in a similar situation where she had lost all of her privileges and get behavior was spinning wildly out of control. she would say things like it wasn't worth it to try because it didn't get her anything.

you say traditional discipline doesn't work. that's right. because they take everything at face value and literally. in my daughter's case punishment was just bullying and many times she didn't connect the punishment to her behavior anyway.

we eventually decided to focus on what she can do, not what she can't. we started rewarding every positive behavior and only punishing the really egregious bad behaviors and then she'd only lose electronics in 15 minute increments. she isn't motivated by praise. or getting a sticker on a sheet. rewards must be tangible for her. taking away electronics for a night or day or every night for repeated infractions would just cause her to slip in top a big black hole where she just didn't care any more. why bother? even though taking them away for a night seems reasonable to us, it isn't. the magnitude to her - it's like a mountain when to us it was just a bump, and that is what makes it unfair. we were destroying her over a quick trip to the library when she was supposed to be in math class.

one we changed things we saw a turn around in a few weeks. now she genuinely wants to be compliant in school. her fight or flight still gets the better of her sometimes, but we just talk about it, dole out a reasonable punishment and she continues to try harder. last year she hated school and was 100% non compliant doing things like leaving class, biting teachers, etc. now? trying really hard. she slips... but we don't punish her into the ground over it. we tell her we love her, make sure she understands what happened, and we move on. then when possible reward the creep out of her when it appears she had an opportunity to slip and didn't.



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01 Oct 2014, 7:24 pm

I know I must sound like a broken record when I post here, but really - check out the stickies at the top of the board, including the Parenting Index, where some posts have been collected by topic.

Ask your school to do a Functional Behavior Assessment. Any school with special needs children should know how to do one. If it's done properly, they should find patterns that indicate what stressors are causing your son to act the way he does. You need to do some detective work to figure out what it is that sets him off, especially since he is doing well at home (often, kids on the spectrum are the opposite, only because they don't feel safe enough at school to act out)

One of my friends whose son was in her district's SPED school finally told her son when he was somewhere between 3rd and 5th grade, that if he hated the school, she'd help get him out of it, but he'd have to manage his behavior and do well in class. I'm sure she offered him all kinds of supports to do it, but he went from the SPED school almost directly into the District's gifted program (except for language arts.)

Is your son old enough to read? We found that my son stopped being able to process verbal language when angry or stressed, and that if you wrote things down (or sent them via text) he was much more able to manage.

We've also found that eliminating certain kinds of content is more effective with my son that eliminating screen time; he needs the screen time to unwind. We explained that until he was able to control his own behavior, we felt that he wasn't mature enough to watch media that showed that kind of behavior, so no TV shows where kids yell at their parents, no violent games, etc. We would set a time period - for my son right now, it's a full day without Anime if he can't speak to us respectfully instead of yelling the way Anime characters do.