Risperdal

[Austin's Mom]

My 10-yo son has been having these meltdowns at school. He says he just doesn't want to be there - he wants to be at home. He kicks, hits, bites, throws things, etc. So we decided to try risperdal. The doctor says we can give it to him WHEN the problem is occurring. I gave him one pill (.25 mg) this morning just to take the edge off (he was anxious to go back after one week off). I just got a call he is hitting, kicking, etc. Says he is pretending to be angry. So they gave him another pill, and that doesn't seem to be working, either. For your children who take Risperdal, how much does it take to work? Also, does it need to be in the bloodstream for a while to work? The school nurse seems to think he needs to be on it a full week to calm him down. We are at our wits' end. He may have to go to our local BOCES if he can't get his behavior corrected. He is an A student, and we don't want him in a segregated school. He usually has some bad behaviors around Nov. through February, but this behavior is the worst it has been.

Any suggestions would be appreciated.

[peglem]

I PM'd you.

[Isabelle]

if he can speak, he can explain his behaviour and if that is his way to tell that he doesn't want to school, perhaps schooled at home for a while it could be the answer.

the problem with risperdal is that it sedates the high functioning parts of the brain, the part that control the emotions, letting the emotions run wild.

the longer he is kept on risperdal the more damage is done to the brain and many times the aggressive behaviour becomes permanent.

try anything, anything, before using antipsychotics like risperdal.

get him a trusted, calm aide that he respects.
try talking to him explaining the consequences.

try any other meds that don't have the destructive effects of risperdal

[mc4_a]

The trick with Risperdal is using it in a steady way for an extended period of time. I find it odd that a doctor would recommend spot use of the drug. That seems very counterintuitive to how the drug is supposed to work. You don't just pop a pill in their mouth and expect things will get better.

With my daughter we started at .25 and over a period of many months moved up to a daily doses to 1.00. The behavior didn't really start improving until she was on a daily dose of .5.

I would also be careful about some of the scare mongering I see in this thread as I doubt very little of it is based in scientific fact.

[mc4_a]

Also one of the known side effect is drowsiness. This is not something you should be giving it to him in the morning. Imagine if you had to go to school and you'd taken a Tylenol PM; not a pleasant experience.

[Austin's Mom]

Unfortunately, homeschooling is out of the question. Both my husband and I have to work full-time to make ends meet. He is just so stubborn; says he wants to be home. Even if I were in a position to home school him, I still don't think it would work. Just trying to get him to do homework is a chore!!! He wants to be home to do what he wants when he wants. As far as his aide, she is very calm and soft-spoken. But of course Austin takes everything out on her by hitting her, kicking her, etc. I think she's about ready to quit. I just wonder why this behavior just came out of nowhere. He has never loved school, but he knew he had to go and get his work done. Why now is he acting like this? As I said in my previous post, he usually has some rough spots this time of year, but it has never escalated to this point. And this is the time we usually see some improvement.

[Mother's Heart]

I just wonder why this behavior just came out of nowhere. He has never loved school, but he knew he had to go and get his work done. Why now is he acting like this?

yes. I think THIS is the important question. Without getting a good idea of why the behaviour has arisen doing things to address it will only be trial and error attempts to quash the evidence of the underlying problem. My child was in kindergarten when I finally learned to stand strong on this aspect of behavioural changes and insist that the source of his misery be ferretted out, rather than just guessing/assuming and trying this that and the other and maybe never knowing, never rescuing him from his dilemma.

Sometimes trial and error sheds light...i've found that often it doesn't. Digging for answers and stretching your understanding seems to do more...for us anyway.

[Lara]

The doctor says we can give it to him WHEN the problem is occurring. I gave him one pill (.25 mg) this morning just to take the edge off (he was anxious to go back after one week off). I just got a call he is hitting, kicking, etc. Says he is pretending to be angry. So they gave him another pill, and that doesn't seem to be working, either. For your children who take Risperdal, how much does it take to work? Also, does it need to be in the bloodstream for a while to work? The school nurse seems to think he needs to be on it a full week to calm him down.

I wouldn't give or allow more Risperdal to be given to your son today!!!

I agree with what's been said about taking some time to achieve a steady state of the drug. Plus, the half life of Risperdal varies quite a lot between extensive metabolisers and poor metabolisers. The sites I was just looking at state half-life can vary from 3 hours to 20 hours. Steady State can take up to 6 days. I've personally never heard of it being given PRN except perhaps in a hospital setting. I would have concerns about the school giving it to him as well. Doubt that would be legal here even. Aside from all that, I wondered why the school said he was "pretending to be angry"? I don't understand that.

Risperdal is heavy duty medication. So he's had 1/2 of one mg. today already? Starting dose when my son used to take it years ago was .25mg and that was on a once a day dosing. I worry about this PRN thing. It could easily lead to some type of confusion with different people giving out doses and I would worry about him getting too much.

When you're looking up info. on risperidone/risperdal, you'll notice that a lot of the sites show very high doses compared to this. That's because the dose given for people who have schizophrenia or other conditions is often given at much higher doses. The doses for conditions like tourette syndrome and aggression in autism is usually at a very much lower rate.

Here's Prescribing Information from Manufacturer (note it's pdf)
http://www.risperdal.com/active/janus/en_US/assets/common/company/pi/risperdal.pdf

Pharmacokinetics
Absorption
Risperidone is well absorbed. The absolute oral bioavailability of risperidone is 70% (CV=25%). The relative oral
bioavailability of risperidone from a tablet is 94% (CV=10%) when compared to a solution.
Pharmacokinetic studies showed that RISPERDAL® M-TAB® Orally Disintegrating Tablets and RISPERDAL® Oral
Solution are bioequivalent to RISPERDAL® Tablets.
Plasma concentrations of risperidone, its major metabolite, 9–hydroxyrisperidone, and risperidone plus
9–hydroxyrisperidone are dose proportional over the dosing range of 1 to 16 mg daily (0.5 to 8 mg BID). Following
oral administration of solution or tablet, mean peak plasma concentrations of risperidone occurred at about 1 hour.
Peak concentrations of 9–hydroxyrisperidone occurred at about 3 hours in extensive metabolizers, and 17 hours in
poor metabolizers. Steady-state concentrations of risperidone are reached in 1 day in extensive metabolizers and
would be expected to reach steady-state in about 5 days in poor metabolizers.

P.S. I keep thinking of things to add on here.
Despite what might be making him not want to go to school, it's not all that easy for kids even without autism qualities to talk about those things. I'm wondering what type of school he's going to and if it's in any way possible that he's getting bullied there by other children? My son was bullied for a very long time and he kept that to himself because of fear of repercussions. It's sort of a red light in certain school settings when a child suddenly stops wanting to go to school like that. I know it depends entirely on the individual situation but that's something to consider.

Oh another thing... Why does he have a difficult time at this particular time of year??? I think you mentioned November to February.

[Lara]

Austin's Mom,
I was thinking some more about what you've written and wondered if you've ever observed the classroom situation at all. I know others here like Mili have had difficulty doing that but I keep thinking there must be something really bothering him that might be able to be sorted out in some other more simple way than having the school give him doses of Risperdal. I'm finding that really frightening.

One thing that was really helpful for my son when he was around your son's age and experiencing numerous difficulties for oh so many reasons, was to get him to draw... to sort of express his feelings down on paper 'cause he can't do that very well with conversation. Some of the things that he drew really surprised me. He was seeing a really great psychologist at the time to try to get to the bottom of a few of these types of issues with school and he was the one who suggested it. He also suggested that he draw how he might like to see things change... well not in those words, but that's basically what he meant. Sand play is good for that as well if drawing is a problem.

You say his aide is very quite and soft spoken and that he's taking his aggression out on her in a physical way. That's another thing I'd be focusing on with the school. Something is not right there. Does he kick and hurt you all at home?

[Jamies Mommy]

My son is 10 almost 11. Recently he started becoming more agressive and having more meltdowns and tantrums.I saw the doc today who is a pediatric autism specialist and he told me that the onset of puberty can cause some autistic children to become more agressive, just as it causes some to begin having seizures. We are going to try Risperdal to get us thru this rough period and then wean him back off. The Doc told me that it takes anywhere from a few days to 2 weeks to see a difference.
On a side note I have a couple of friends whose autistic sons are around the same age as my son and they are also seeing an escalation in behaviors and agressiveness.

[gynwhyver]

Austin's Mom:

I, too, am concerned about accidental overdosing. There are precautions that can be taken. Did the school give you a form to sign so that they have your permission/your physician's permission to give the meds at school? Does your school have information from your child's doctor on how and when to administer this med? Can you request that only specific staff give this med (if you agree) and that they must document the date, time, and amount that was given (or better yet, call you first before administration)? Did they consult you before giving the med, or did they just administer the med because it was available? What else have they tried prior to medication to deal with behaviors? Has your school offered your son a behavior plan (by law, if he has behaviors that interfere with his ability to learn, the school is legally obligated to provide him with a behavior plan, but you'll need to ask for one), and if so, is that plan still appropriate?

I was also wondering about his sudden refusal to go to school and the escalation of his behaviors while at school. You can request a Functional Behavior Assessment from the school, in which the school has staff (preferably a school psychologist or behavior specialist - and you can request an independent evaluation) document Antecedents (what happens before), Behaviors (what happens during) and Consequences (what happens after). You want specifics, and I have no idea how relavant this is to your child, so bear with me, but say his teacher asks the class to open their math books, turn to page 50, and complete the problems on page 51. Your son opens the book, turns to page 50, reads through the explanation of how to do the problems, looks at page 51, but can't figure out how to set up the equations. (Antecedent). He becomes frustrated, picks his book up, slams it down, and begins to yell. His aide then tries to calm him down, but only makes the situation worse, because she doesn't understand what frustrated him in the first place (he needed help, but couldn't ask for it). He becomes more frustrated because he can't express what's wrong, and becomes more and more agressive. (Behaviors). Because he is so "out of control", he is taken to the nurse's office and is given a pill to help calm him down (Consequence).

Now, by gathering this type of data, what happens, when does it happen, how often does in happen, does it happen in specific situations or is it unpredictable, does it only happen in the afternoons, only at lunch, only with a certain teacher, etc., we can begin to figure out why behaviors are occurring (and sometimes, we still may not be able to figure out why)...We also need to know how does staff respond to the behaviors? Are they helping or making things worse, because how a staff member reacts to your child can impact your child's behavior, and can make a bad situation worse. It would also be helpful if you shared with the school what you do at home when these behaviors are exhibited, what's worked for you, and can this be adapted to the school setting? Does he exhibit these behaviors at home or is it just at school?

Once we start looking at behaviors as a form of communication, instead of just saying the kid is "bad", then we can learn how to begin to address the behaviors, and yes, sometimes that includes medication.

Here is also a link to rxlist.com's entry for risperdal, where you can learn more than you never wanted to about a drug: http://www.rxlist.com/cgi/generic/risperid.htm.

Please note that Risperdal has been approved for treatment of schizophrenia and Bipolar disorder, and the safety and effectiveness for use is children is not established.

Please don't think I'm anti-drugs, because I'm not. My daughter takes 2000 mg of Keppra per day to prevent seizures and would die without it. When she first began taking this med, it was not FDA approved for use in children, and the safety and effectiveness of this med still has not been established for children under 4 years of age.

Sorry if I come across as preachy or elitist. I don't mean to be. I'm currently in the middle of a Due Process case against my school district because they're saying my 7 yr old daughter is too dangerous to return to school (yet have never once sent home an incident report, or a note, or called me to say how) and are blaming her Keppra for "behaviors", which they've never clearly identified, and which are clearly related to the autism diagnosis and a lack of staff training in autism to appropriately respond to "behaviors" (such as removing the child from the classroom for refusing to do a worksheet and taking her to the nurse's office, where the nurse gives her candy, then to sit beside the secretary's desk, where she can look at magazines, or maybe she'll get to visit with the principal and he'll allow her to WATCH CARTOONS. Yeah, that'll teach her to behave appropriately in class. No wonder the kid keeps throwing things/refusing to do work/running out of the classroom (she's a runner). Because she's rewarded for being "bad" (or as they say, "noncompliant." (and rewarded behaviors are more likely to be repeated).

Anyway....you do have options, including continuing the med.

Take care,

Gwyn

[peglem]

Austin's mom, I hope you don't mind, but I wanted to add a link to one of your previous threads because I think it speaks to a lot of the questions being asked here.

http://brain.hastypastry.net/forums/showthread.php?t=9056

If you don't want that here, I'll take it off!

[Isabelle]

I would also be careful about some of the scare mongering I see in this thread as I doubt very little of it is based in scientific fact.

There is a lot of scientific fact.....so much concern is out there that many psychiatrists are warning parents to learn all what they can about psychiatric drugs like Risperdal. Dr. Grace E. Jackson is one doctor just mentioning a few adverse effects that usually the average doctor is not aware of.

http://www.geocities.com/dansweb2000/rta.htm

She even wrote a book "Rethinking Psychiatric Drugs: A Guide for Informed Consent"
http://www.authorhouse.com/BookStore/ItemDetail.aspx?bookid=33296

Gave lectures
"What Doctors May Not Tell You About Psychiatric Drugs"
http://www.ccmh.uce.ac.uk/dr_%20grace_%20jackson_transcript_09.06.04.pdf

We, as parents of children unable to give consent, need to arm ourselves with knowledge, our children's future quality of life hangs in the balance....

[Lara]

peglem, thanks for posting that again. I had forgotten that thread. That helps.

Gwyn, actually Risperidone/Risperdal was FDA USA approved near the end of last year for treatment of certain behaviours seen in children with autism.

The approval is the first for the use of a drug to treat behaviors associated with autism in children. These behaviors are included under the general heading of irritability, and include aggression, deliberate self-injury, and temper tantrums. http://www.fda.gov/bbs/topics/NEWS/2006/NEW01485.html

Austin's Mom,
I haven't re-read the whole of the other thread yet, but maybe your son is bored in class. I see you mention he's said that. That's highly possible. I'll go re-read the whole thread again in a sec..

I know every situation is different, but I just wanted to mention that the anger generated episodes that my son used to experience seemed to be triggered by a number of outside influences as well as inside influences. When he had these episodes it was as if he wasn't reachable, a little like having a night terror.

Overstimulation with sensory issues including noise and lights and busy busy busy seemed to be one of them. Sometimes his episodes were worse when he was just basically frustrated and the people around him were not understanding him. He also had a lot of motor and vocal tics and OC issues and some other things which frustrated him very much indeed. So, I know that the situation is different for every child but I would try to figure out if there are any noticeable triggers. There may not be, and I only knew what my son's were by looking at the situation in retrospect.

I personally think that we all should know as much as we can about any treatment of any kind that we are giving to our children or ourselves. However, we don't know exactly what is going on and how serious the situation may be for others. We often don't know if people have support systems in place or if they're alone and single parents. Heck, I'm one of them and it's been darn hard work. I guess that's why I always looked into things on my own the best that I could however, back when my son was little, there wasn't as much known as there is now.

I wish I could offer some really concrete and practical suggestions but it's difficult while we know so little about each other really. I do know though, that there are situations sometimes when interventions are absolutely needed. We're not talking about giving medications to stop an occasional temper tantrum in a shopping centre, we're talking about little children who obviously feel absolutely out of control and then in turn we feel out of control because all the usual accommodations just are not working. I wish I could just say don't do this or don't do that and do this or do that and it'd all be alright. Sadly I can't do that. I'm just so thankful that things got so much better here with age. Age 10 and a few after that were very difficult time for my son.

[Austin's Mom]

Thank you all for your responses. I observed the classroom situation once. But now he has been moved out of the classroom (due to anger) and is in the behavioral modification classroom. I don't believe anything is happening at school. If he doesn't want to do something, he feels he is losing control, and he gets angry. The other day I was driving home from McDonalds, and I asked him to move over so my other son could put his drink in the drink holder between them, and that's all it took. He was angry because he didn't want to move over. He threw my son's coffee all over, and he was throwing anything he could get his hands on. That's all it takes, something he doesn't want to do. So he does it at home only when asked to do something he doesn't want to do. It happens much more often at school because he doesn't want to do the work.

I, too, have read about puberty and the changes happening to his body. Perhaps this is the beginning of puberty - I don't know.

I have to say this all started back in the fall when so much pressure was put on him and his peers to do well on the state exams. It has been a downhill battle since then. In addition, he has been assigned a new aide this academic year, and the aide and teacher do not get along at all. I'm sure he senses that.

When he is angry, the school psychologist asks him what makes him angry. His usual response is that he misses his mom, and he wants to be home with me. I told him I also miss him when I'm at work but I am happy because I know I'll be seeing him soon. Speaking of the psychologist, she tells me we must be positive always. Reward him for the good stuff, even if he gets out of time-out and seems to have pulled it together, he gets a reward. She is also doing social stories with him.

I only plan on using the Risperdal to get him over this hump. I just don't know what else to do. We have tried depakote and concerta, and he had a horrible reaction - he went beserk!

[Mother's Heart]

oh boy! this is so like my son.
He is no problem-o in situations that are not demanding. He is fine being in respite with his dad, or gramma, or the people who watch him at church because there is NO demand on him. he can do whatever he wants...watch the videos, eat, color, whatever, and if he asks for something he gets it immediately. He is rarely asked to do anything he doesn't want to do...he's just allowed to chill. But if, in those situations or at home, or anywhere else, he is asked/told to do anything or physically guided or restricted then he blows up. Naturally it happened more with mom at first because I controlled his world...then started happening at school and let up at home because I knew his idiosyncracies well enough to adjust to him.
But it's such an abrupt eruption, it seems like he has a flight or fight response whenever someone speaks to him or redirects what he had planned inside of him to do next, (activity or movement?). So the more abruptly we ask him to do something, without the warning to transition him from one activity to the next, the more likely he is to have an out of control, 'aggressive' reaction, and the more intense it will be.

I think I've observed a couple of things that might shed light on it, for my son at least. Maybe there's a clue for yours too.

He was so dyspraxic as a tot that we completely controlled him, then focused on teaching him to transition from one activity to another, since he had trouble making that transition. But that lacked insight, because it wasn't for him to deal with someone asking him to change, it was to help him learn to shift gears, even on his own initiative. Well, he has MORE difficulty with someone else throwing a wrench in the plans by surprising him with a new instruction.
I think perhaps he has to work so hard to motor/cognitive plan his actions that it is beyond frustrating to have them interrupted and changed and then him have to deal with the new stuff with no notice.

I think that often our asking him to do something is done in a way that is terrifying to him because of the offensive sensory component that the request comes in. We are too loud, or too something else, pitch or attitude? or smething overwhelms his ability to handle the request. He has that flight or fight response then too. In the past I spent a lot of time regulating my own behavior thus: if he was engaged in an activity, (even if it appeared to me to be 'doing nothing') and I wanted to ask him to do something else, or to show him something I would approach him slowly and quietly. I would walk up to him slowly, if I needed to approach physically. I would also begin to speak to him in a very soft, quiet voice, and slowly. This really seemed to help him. I guess it was my way of giving him that warning to transition that professionals often advise. You know, the visual timer, the words that warn he is going to be asked to do soemthing else in two minutes, the verbal planning, before he actually has to do it.

Early on in my ds' 'acting out' behaviours I could see that they were triggered when we would unexpectedly ask him to do something once he already had in mind what he would do next.

okay. now I rambled so much I forgot what my other point was....since I got so lost I couldnt' make those first two points. sigh. sorry.

Even when he's trying to transition because he WANTs to himself he has a hard time. If he has submitted to the idea of going somewhere and finally gone through all of his avoidance behaviour and gotten dressed, the second he is dressed he seems to feel a really intense compulsion to go now. He practically trips over himself and me trying to get out the door and rushes into the car...and often this will be accompanied by a growing anxiety, rising cry/whine, increasing sib, on the way. Then he has to settle once he's in, but he's relieved almost by it being there. (really kills him when I spend a half day packing for a road trip:rolleyes: ) But another example of this when HE wants to and slightly different because he initiates the plan: At church recently ds has been asking to go to the worship service with me instead of staying in the children's area as usual. Once he's gotten permission he gets a bit stressed if prevented from going right away. But the difficult part is that he will rush down to the sanctuary but may lose it as he approaches the door and turn to leave. Start to cry/hit but then may also rush in there and really create a ruckus as he settles in with loud protest/crying like he's been forced to go. He did this this week in fact, setting up a terrible fuss when I reached out to grab his belt from behind to keep him from taking off up the aisle and guided him to an open seat near us. Then he was so pleased to be in the service, after he quit crying and yelling and hitting me/himself. I asked him about it later and he said "I wasn't mad"....then never answered my "what then?"

He often says he wasn't mad when he really appears furious to us on the outside. He says that's not it. I'm still working on understanding what it is.

But you know, this time I thought it might be because I grabbed him (what a lousy thing to do...desperate times, and all) but he often does exactly the same meltdown when we just walk through the doorway. There;s a lot of sudden sensory assault to deal with in that situation
but I think there's also some other mental assault to deal with. Maybe it's like the discomfort the rest of us feel when we walk into a room of people assembled. and instinctive selfconsciousness until we can join in? social stuff huh.
sensory: I'm trying not to say< 'sit here' or let's go sit down" to keep from adding that obnoxious 's' sound he hates to all he's already trying to assimilate. maybe that will help.

hmm. Have they tried NOT giving your son verbal directions at school? maybe visual directions without the accompanying verbal could work for him. You know, we teachers used to be taught to use multiple modes of input at the same time to reinforce learning. Now it seems it's often a plus to limit to ONE mode so the others don't confuse the autistic person.
Or giving him a brief pause with no input before giving instruction, then limiting the instruction to JUST verbal first, blocking out the visual and movement and clutter, then show him what he will be working with?
I wonder what would happen if they developed a consistent routine for how they give him instructions so he knows what to expect each time? (hard to imagine that working in the reg classroom?)
you know, I just can't help but think he's being overloaded with too much demand at once to deal with and it may not be so much that he doesn't want to do the actual task...but it's the way the task is presented that is too much for him to handle and he doesn't wants to avoid that instead. And now his reactions have been compounded over time and he is reacting to the whole situation becasue of it's identification with that unpleasantness.

have you read mili's thread with the comments about how hard it is for her to focus on what's being said to her in the iep meetings because of all the OTHER things she has to filter out AND all the things she has to monitor about herself to tell if she is doing what is expected of her by us nt's? it's enlightening.
( http://brain.hastypastry.net/forums/showthread.php?t=10335 )

hmm. Have you read "the Out of Sync Child?"

i see myself being led down a path here.

I am having a terrible time making this make sense. I may let it sit here awhile and revise it. Or maybe I will submit it and come back to it later. don't be surprised if I edit this post in an attempt to make it more logical and less rambly. some days I just cannot think in a straight line. Looks like today will be so.

[mc4_a]

There is a lot of scientific fact.....so much concern is out there that many psychiatrists are warning parents to learn all what they can about psychiatric drugs like Risperdal. Dr. Grace E. Jackson is one doctor just mentioning a few adverse effects that usually the average doctor is not aware of.

http://www.geocities.com/dansweb2000/rta.htm

She even wrote a book "Rethinking Psychiatric Drugs: A Guide for Informed Consent"
http://www.authorhouse.com/BookStore/ItemDetail.aspx?bookid=33296

Gave lectures
"What Doctors May Not Tell You About Psychiatric Drugs"
http://www.ccmh.uce.ac.uk/dr_%20grace_%20jackson_transcript_09.06.04.pdf

We, as parents of children unable to give consent, need to arm ourselves with knowledge, our children's future quality of life hangs in the balance....

There are risk factors to any kind of therapy. For example, many parent using gluten free diets are not making sure their children get the proper amount of macros in their diets for a growing child (Carb / Protein / Fats); along with possibly creating a eating disorder for the child somewhere down the line.

And the report confirms while there are some risk factors, many of them happen with much larger doses; many of them are not terribly relevant to children. The weight gain is probably the main concern here as is the effectiveness of the drug over time. This is certainly something that my wife (who has a masters in psychology) and me (with a science based background) went into without understanding the risk factors and benefits in detail. We discussed it with our doctor and went into the treatment knowing all the factors ahead of time.

I think Risperdal works well as a short term drug cycle, but I am certainly not suggesting children go on the drug long term. With my daughter we introduced the drug because she was completely unable to function for a short time. She was really losing it. No therapy or anything else was making a dent. Over time the drug gave her the ability to control herself better and at least be able to function. She's made fantastic progress.

That being said, I'm cycling her off the drug because A) I don't think we're going to make any more gains with it and B) I'm not a huge fan of having a child on any drugs for a long period of time.

Yes there are risk, but it's important to weight everything together and make an educated decision. To say there is never a case where Risperdal can work without significant damage is disingenuous.

[mc4_a]

And I think it's important to note that children when they move into puberty and their teenage years become kind of...well little jerks. Autistic children are really no different in that way. It becomes very difficult to separate the two. Unfortunately, educators will always link it back to the condition, forgetting that these children go through biological changes too as their bodies mature.

[Mother's Heart]

And I think it's important to note that children when they move into puberty and their teenage years become kind of...well little jerks. Autistic children are really no different in that way. It becomes very difficult to separate the two. Unfortunately, educators will always link it back to the condition, forgetting that these children go through biological changes too as their bodies mature.


hear! hear! spoken as the parent of one sassy teenager (withASD) and one mostly silent one who wants so badly to be sassy but knows better, or is afraid to. :D

too often it is forgotten that these kids are kids too....not 'just' Autistics. too often everything gets linked back to the autism...and an explanation for EVERYThing is sought in the light of the autism...instead of remembering that there are PEOPLE inside of that autistic PERSON.

[peglem]

I think Risperdal works well as a short term drug cycle, but I am certainly not suggesting children go on the drug long term. With my daughter we introduced the drug because she was completely unable to function for a short time. She was really losing it. No therapy or anything else was making a dent. Over time the drug gave her the ability to control herself better and at least be able to function. She's made fantastic progress.

.

I just wanted to add that, for my daughter, it is difficult to help her develop strategies to deal with meltdowns because, as you know, you can't even get them to listen and think during a meltdown, but also, talking about it later makes her anxious and can sometimes trigger another meltdown- no matter how kind and non threatening I try to be.

[Mother's Heart]

yeah.

sometimes kind and non-threatening seems not quite enough, doesn't it?

One way I've sometimes found a little success with donovan in talking about past situations that are likely to recur is by making it my problem, instead of his. He REALLY got involved with explaining to me why and how I should react to frustrating/upsetting situations by calming down first, finding out what had happened before doing anything, etc. :) He thought I was talking about MY problem in overreacting to HIS meltdown. heh heh heh.
(okay...so he was right, it applied to me as much as to him. sigh.)

Would it be possible to talk to her during a very neutral time about a supposedly hypothetical future situation and not make it recognizable as anything that has already occurred?

[Isabelle]

I just wanted to add that, for my daughter, it is difficult to help her develop strategies to deal with meltdowns because, as you know, you can't even get them to listen and think during a meltdown, but also, talking about it later makes her anxious and can sometimes trigger another meltdown- no matter how kind and non threatening I try to be.

Amazing! Peglem, my instincts were always to divert/distract when I sense a HB episode coming and ignore after happening. It was horrible after risperdal his father had to be there to restrain him i couldn't divert him.
Later one of his caregivers noticed that i never 'discuss' his HBs with him and she thought it might make a difference, so i did, when he was calm and smiling, then and there triggered an episode.
I tried again and again to satisfied the caregiver incredulous request (she was telling me try this way and that way) and even we did it together...then his sister tried, we were astonished, my instincts was right, we shouldn't mention his SIBs to him.
Apparently for TS sufferers mentioning SIBs is trigger for more SIB.
Autism and TS has to have a connection at least in my son's case.

[peglem]

Amazing! Peglem, my instincts were always to divert/distract when I sense a HB episode coming and ignore after happening. It was horrible after risperdal his father had to be there to restrain him i couldn't divert him.
Later one of his caregivers noticed that i never 'discuss' his HBs with him and she thought it might make a difference, so i did, when he was calm and smiling, then and there triggered an episode.
I tried again and again to satisfied the caregiver incredulous request (she was telling me try this way and that way) and even we did it together...then his sister tried, we were astonished, my instincts was right, we shouldn't mention his SIBs to him.
Apparently for TS sufferers mentioning SIBs is trigger for more SIB.
Autism and TS has to have a connection at least in my son's case.

I still try, because unless Allie feels a sense of power over these episodes, she continues to feel like a helpless victim of them. I do think its helping...she understands about staying safe when it happens (still working on mommy being safe,too) and cooperates with being restrained as much as she can. But, someday, I hope we can work up to taking action when she feels it coming (if she does feel it coming) to avoid it happening at all.

[Lara]

Regarding Risperdal...
I just wanted to add something about the weight gain. Years ago when my son took this medication for a time, there wasn't very much information available about some of the potential side-effects as there is today. Much more has surfaced about that in more recent times. I must admit that in my son's case, the weight gain was perhaps the longest lasting and most difficult problem that surfaced. It took him many years to lose that weight and I know it affected his self-esteem greatly which in turn affected him wanting to exercize or play sport especially when he was still in the school setting where PE teachers used to actually weigh every individual in the class, despite protests from parents.

I also remember all the conversations I had with doctors and specialists and others who kept telling me that it was his diet and basically that I needed to change his eating habits. Well, he always has had strange eating cycles, but it was not related to that I know. It wasn't his diet at all, it was the Risperdal. Another thing that we experienced and I've seen others have experienced the same thing, is that in some people, the drug's positive effects tend to fade out or like I say "hit a wall". In our case, the prescribing doctor kept wanting to increase the dose, but we didn't do that. The dose he had been on, by the way, was a very small dose to begin with and nowhere near the amounts indicated in all the literature for Risperdal as treatment in some other conditions such as Schizophrenia etc..

I know that not all people experience this problem with the weight gain, but I just wanted to write this from my experience.

[gynwhyver]

Lara:

Thanks! I missed that about it being FDA approved.

Take care,

Gwyn

[Lara]

I was just looking for an article I'd read recently which was talking about a genetic polymorphism involved in neuroleptic induced weight gain ... while I was doing that I came across this article about Risperidone and Autism and thought I should post it 'cause it's pretty recent... January. I didn't know what this Cochrane Database of systematic reviews was though so looked that up as well.

http://en.wikipedia.org/wiki/Cochrane_Collaboration

I'm a little confused about whether this is reputable information or not, so maybe someone else might know about that... anyway here's their article. NOTE: there's more info. available in you click the Full Text link on the PubMed page

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=17253538&query_hl=2&itool=pubmed_docsum
Cochrane Database Syst Rev. 2007 Jan 24;(1):CD005040.
Risperidone for autism spectrum disorder.

* Jesner O,
* Aref-Adib M,
* Coren E.

BACKGROUND: Autistic spectrum disorder encompasses a wide variety of behavioural and communicative problems. Both the core features and non-core features of autism have been targeted in a variety of therapies. Atypical antipsychotic medications, including risperidone, have been used for symptom and behaviour improvement and have shown beneficial outcomes, particularly in certain aspects of the disorder. However, given the nature of the condition presenting in young patients, the risks of these potentially long term therapies must be weighed against the benefits. OBJECTIVES: To determine the efficacy and safety of risperidone for people with autism spectrum disorder. SEARCH STRATEGY: Electronic databases: CENTRAL (Cochrane Central Register of Controlled Trials) 2006 (Issue 3); MEDLINE (1966 to April 2006); EMBASE (1980 to April 2006);PsycINFO (1887 to April 2006); CINAHL (1982 to April 2006); LILACS (1982 to April 2006 ); Clinicaltrials.gov (USA) (accessed April 2006); ZETOC (1993 to April 2006); National Research Register (NRR) (UK) 2006 (Issue 1) were searched. In addition further data were retrieved through contact with pharmaceutical companies and authors of published trials. SELECTION CRITERIA: All randomised controlled trials of risperidone versus placebo for patients with a diagnosis of autism spectrum disorder. All trials had to have at least one standardised outcome measure used for both intervention and control group. DATA COLLECTION AND ANALYSIS: Data were independently evaluated and analysed by the reviewers. Data were evaluated at the end of each randomised controlled trial. Unpublished data were also considered and analysed. MAIN RESULTS: Only three randomised controlled trials were identified. Meta-analysis was possible for three outcomes. Some evidence of the benefits of risperidone in irritability, repetition and social withdrawal were apparent. These must however be considered against the adverse effects, the most prominent being weight gain. AUTHORS' CONCLUSIONS: Risperidone can be beneficial in some features of autism. However there are limited data available from studies with small sample sizes. In addition, there lacks a single standardised outcome measure allowing adequate comparison of studies, and long-term followup is also lacking. Further research is necessary to determine the efficacy pf risperidone in clinical practice.

PMID: 17253538 [PubMed - in process]

[momof5]

My son's been on risperadol since he was 10 yrs old. He is now 12 and weighs around 100 lbs. He takes 1 1/2 in am and 2 pills in pm. The doctor I see is a specialist in Autism. I feel it has helped him be more connected and helped his aggression. The doctor said that it won't get easier until after puberty. He finds that most kids calm down after puberty.

[silentmiaow]

I am horrified at the idea of using Risperdal to get through puberty, possibly because it was used on me.

We have reasons for what we do. The reasons are not that our brains are malfunctioning and we just "become aggressive" which needs to be treated with a drug. The reasons have to do with any number of things, including the stress of puberty, changes in the way school works, overload, etc. School stopped working for me at puberty. Giving me Risperdal so I could sit through class quietly would have been to nobody's benefit. I needed to learn things school wasn't teaching and in ways school didn't teach it. If an environment is overloading, it's rarely a good solution to drug someone until they can tolerate it. Especially not something that can cause such bad long-term effects. (Yes, even at low doses.) Even if a person is having totally out of control problems, that doesn't mean you go into their brain and start mucking with neurotransmitters, it means you have to find out what the problems are.

[Pamster]

I can totally respect you're train of thinking silentmiaow, but I took Risperdal myself and it didn't have any adverse affects on my system other then small weight gain. I wasn't taking it to treat autism though it was to help me with bi polar II. What do you think the school should have done differently to help you learn better? My son is 10 and I don't know what we're supposed to do to get him reading, I mean really reading. I know other kids read well at this age but my son only has the prerequisite skills of reading and not the actual ability to read fully yet.

I don't know what we can do differently that we're not doing though. I am sorry Risperdal hurt you, do you remember what it was like for you? Was it like you described? Drugging you up until you could tolerate an intolerable situation?

[Italia]

As someone else has already suggested you,are you sure the problem is Austin?
Maybe there's something at school which has hurted him,his therapists,the teachers,his mates.......maybe one boy or girl is not nice with him,or the teachers do not involve him enough,or maybe he feels isolated...I don't know...try to understand this before giving him drugs........

Maybe I'm prevented because here in Europe it's not so common to give drugs to autistic children,but I don't think they're the right solution....
But it's only my idea,it's not supported by any scientific study!;)

hope things will improve soon
(((((hugs)))))

[Isabelle]

As you know Pamster I belatedly agree with silentm... I said "belatedly", because Risperdal almost killed Danny and when we took a stand and say "No more drugs for Danny" for that stand we saw the dark side of the "business".

if I could live life again I wouldn't allow drugs on him or even a psychiatrist or anybody saying a negative thing about him.

The group home focused on his HB and SIB aggravating it and making it chronic, unstoppable. Negatively reinforcing that aspect of autism and drugs caused/increased his SIB.

Editing: group homes that depends on drugs to control/sedate the autistic indicates a lack of adequate support.

I saw in silentm videos how she hitted his head so fast and unexpectedly with the heel of her right hand, exactly as Danny does, something he never did before drugs.

The idea is to keep him busy in things he chose, likes to do.

At home he had his artwork, his video games, calculator, computer, many electronic gizmos, even an old typewriter, to keep him distracted from SIB, while at the group home they wanted him sitting down doing nothing.

At school after Thorazine he became impulsive develop bizarre behaviours, prevented from releasing his extra energy his running became compulsive out of control. Excessive use of "NO" was the trigger for acting up, instead of "no" he needed to be told what to do calmly.

[Pamster]

I know you whole heartedly agree with silentm Isabelle and I definitely agree with you that the drug damaged your son. I wish there were easier ways to see through the window of autism and see what we NT's (and I use that term loosely since i am BP II and suffer Anxiety/PSTD) can do to help our autistic loved ones learn and develop. We are in fact weaning Jackie off the abilify and thinking of trying something else, since he's not showing signs of stability right now it's about the only thing left to do, beyond getting him off all atypical neuroleptics. I am curious as to what his behavior would be like if he was off the abilify altogether, but it's still up in the air as to whether we will go to that point where he's not taking anything but anti-convulsants and clonidine.

You said how NO was a trigger for him, I can understand how that would become a trigger for someone, and I agree what he needed was to be told calmly what to do next, rather then be scolded outright for a given behavior. Is Danny doing his artwork again?

[Isabelle]

No,Pamster, he has problems controlling his arms/hands. He doesn't have any more creativity left in his brain. Zyprexa and the abuse erased any interests in activities that gave him pleasure.

[silentmiaow]

There could well be creativity left in his brain. It took me years to get back to normal after 4 years of neuroleptics. (I'm now as close to normal as I get -- there's residual motor and cognitive impairment in some areas, as far as I can tell, but it's better than it was right as I stopped the stuff. I've been off neuroleptics for 8 years.) And it's taken me a long time to get things like creativity and such back to something resembling what they were like before. That and the motor stuff makes acting on that kind of thing hard. But I've improvised other ways.

[Pamster]

I wonder what it is about neuropleptics that hurt you silentmiaow. I take one still and have for well over two years maybe closer to three and I have written novels and poetry all during this time, so it hasn't shut down my creativity. Of course as I said I am not autistic, but it helps my bi polar-ness to stay in check, I can remember what it was like before and the depression and moodiness was crippling.

I'm not saying they don't damage people I do believe they do, but why do they prescribe them to our kids for aggression if they don't help? You don't have to try to answer that, I am just asking it retorically because I don't have the answer.

I am glad to see you posting with us again silentmiaow. I really appreciate your insight. It's good to see you again. :)

Oh Isabelle, I am so sorry that they damaged Danny so horriblly, it's not fair that he was pushed beyond his ability to cope and then over medicated in such a brutal and heartless manner. I hope he regains some of that lost mobility/control so that he can paint again. It's so wrong what happened to Danny.

I am thinking of getting Jackie off the neurpleptic drug he takes and seeing how he acts for awhile because he's really been suffering these past couple of weeks and we finally know why. It IS the drug having an adverse reaction which we are probably going to discontinue it-need to discuss it more with the p-doc but I think she's going to be open to trying it and we'll see how he acts. Something silentmiaow said about using drugs to get through puberty being horrible, that got to me and made me think about things, so we're going to see what happens when he's just taking anti-convulsants. Which he no doubt still needs or he'd be having seizures.

[silentmiaow]

I wonder what it is about neuropleptics that hurt you silentmiaow. I take one still and have for well over two years maybe closer to three and I have written novels and poetry all during this time, so it hasn't shut down my creativity. Of course as I said I am not autistic, but it helps my bi polar-ness to stay in check, I can remember what it was like before and the depression and moodiness was crippling.

Well, you're not autistic. That is one part of it. Most people, though -- autistic or not -- experience a dampening of thinking and creativity on neuroleptic drugs. I have talked to people who were diagnosed as schizophrenic who took these drugs, and it didn't make their hallucinations go away, it just made them have trouble thinking and/or reacting to them. My reaction may be an uncommonly strong one (although not uncommonly strong among autistic people), but it's not the unusual one. The unusual reaction is yours -- to have no impairment of thinking or creativity or movement on these drugs. My reaction is just an extreme version of the usual reaction. Even most people I know who want to take these drugs experience the sort of side-effects I described.

I'm not saying they don't damage people I do believe they do, but why do they prescribe them to our kids for aggression if they don't help? You don't have to try to answer that, I am just asking it retorically because I don't have the answer.

They prescribe it for aggression because they can. These drugs inhibit the link between thought and movement -- several places along the line. They inhibit aggressive behavior because they inhibit behavior, period. I can remember when they started prescribing them more and more for autistic people. I can remember the lawsuits that had just been beginning to crop up around Risperdal and false advertising. They want to make money, autistic people are a really good group of people to market a drug to. (That's why every psychiatric drug on the planet, practically, is marketed at us.)

And we're also one of the worst groups of people to give neuroleptics to. We already often have movement disorders and epilepsy. Neuroleptics make both of those worse. It doesn't take a rocket scientist to figure out that you shouldn't market a medication that induces parkinson-like movement disorders and lowers the seizure threshold towards a population with a higher rate of epilepsy and catatonia. But that's exactly what is done.

But the use of neuroleptics to contain aggression is their oldest actual use. They have long been used in institutions of all kinds (mental institutions, developmental centers, nursing homes, etc) to make things easier on the staff. (I'd recommend Mad in America by Robert Whittaker for a history on that and on the marketing of Risperdal as well.) It was only later, in an attempt to justify their use, that they were described as therapeutic in some way. They were originally described -- favorably(!) -- as inducing similar symptoms to encephalitis lethargica (what people had in "Awakenings").

I have no problem with an adult taking them of their own free will, though. The problem I have is that they are given to children, for reasons that are dubious at best, and the dubious reasons are believed because they come from doctors and stuff.

Also, beware of withdrawal symptoms. The official line is that if you have trouble withdrawing from these drugs then this is just re-emerging symptoms and you needed them in the first place. In reality, such reactions as intense pain, hallucinations, confusion, etc, can be part of the withdrawal process for these drugs. I went through a nasty withdrawal period after I got off of Seroquel, it lasted at least a month, and it wasn't until six months that I was totally over it I think. And that was while tapering off of it.

But the idea of giving a drug to control aggression seems extreme except as an extremely short-term temporary measure (which was all that Risperdal was ever supposed to be used for in autistic people, the recommendation was six months or less, although I'd say even less than that is appropriate). Because aggression (or stuff that gets called aggression) comes from somewhere, and it doesn't make sense when there is a problem to simply give someone a drug so they can't react to the problem.

[Pamster]

I will have to get that book and read it, thank you for recommending it to me to investigate the history of these drugs usage. When you say intense pain, what kind of pain was it? Was it nerve pain or dull aching pain? Was it in your head or limbs and body? I am asking so that I can be alert to help my son as he comes off this drug. He's having akithisia right now and its so hard to see him having this restlessness and trouble sitting still. I know it's not easy for him right now and I am glad the dr. recognized it for what it was, although she wants to start him on another drug, we go to the neurologist next week and I am going to talk to her about things and get her opinion.

The psychiatrist was talking about cross tapering him (and what she wants to put him on is Risperdal which he did take before and did okay on) and I don't know if we really want to do that or not. I am still trying to think things over, and am afraid he's being damaged by this drug in a way that will haunt him for the rest of his life. Like Danny, Isabelle's son was damaged. I am leaning towards getting him off those kind of drugs and just keeping him on AED's and seeing how it goes. I agree with you about adults choosing to take them like I have, because it really HAS improved the quality of my life, but I have always had reservations about my son's taking them. You're right about the dr's giving dubious reasons for admistering them, hopefully my son will do well off this drug in time. Only time will tell.

[Isabelle]

Absolutely, Silentm...in those times even they persuaded Temple Grandin to revise her book in which she objected to the use of tranquilizers, which are basically neurotoxic substances, to say that in some cases are needed. By then almost all of my son's housemates had been dxed with "psychosis" and other mental disorders and in need of risperdal.

They do it because they can, absolutely the truth. Also the agency receives money from each prescription and the autistic is sedated 18/20 hours/day and the agency saves money by hiring less staff.

Pamster, I observed that those who were aggressive in puberty and not "treated" it was temporal, once over puberty they were the most even tempered autistic in the group.

But for those unfortunate ones "treated" with a/typical neuroleptics since young the aggression and self-injurious behaviour became chronic and they never got better.

This is what I observed:
A) Given the drug the child or adult becomes an "affectionate drunkard" or called "honeymoon". Quiet, sleepy, affectionate, even has a spike of intelligence for a while. Some gain weight.
B) Some become aggressive/SIB immediately, others later. Some develop seizures, the worse ones are "psychotic seizures". It's said, the drug has lost "its effectiveness".
C) Then as time goes by the person develops the other scary adverse effects, hyperglycemia/diabetes, impulsiveness, confusion, abnormal movements shows like Tardive dyskinesia, akathisia, extrapyramidal side effects, parkinsonism, incontinence, etc.

There is no safe time. We give him Thorazine for a very short time and the damage continued for several months.

The discontinuation has to be done extra slow to reduce (you cannot prevent) the adverse effects. And some adverse effects like what is called "late-onset of extra pyramidal side effects" of abnormal movements continue after withdrawal. Then there are the spasms which are very painful like sudden electrical shocks or muscle spasms from the back, neck, head; feelings of numbness, burning, in and needless on the tips of the fingers to prolonged erections (prapism) or internal nervousness which is akathisia, insomnia, seizures, etc. off drugs they continued developing in each different way.

So very gradual is the key.

[Pamster]

So far he seems much better having the dose dropped down 2.5 mgs from 10 mg. As I was trying to fall asleep last night I had some spastic movements in my body but it didn't hurt thankfully. I am pretty convinced that we need to get him off the neuroleptic drug and give him a chance to be himself and I am praying the aggression goes away. I was telling my mom last night, I remember a time not so long ago that he only took clonidine and seizure meds and an SSRI and he was much happier.

Thank you so much for sharing your experiences silentmiaow & Isabelle, it's made me rethink things and question the use of this kind of drug for my son since he's not presenting any SIB's and the only aggression is when he wants something or doesn't want to transition from one activity to another. I think it's time he has a chance to show us what his 'normal kid' behavior is now at ten and I am willing to slowly wean him off this drug, but I don't think I am willing to taper him up onto risperdal again, not unless he's exhibiting real serious SIBs and other problematic behaviors which at the moment he's not.

Thanks again for making me think about this...I appreciate the pain and suffering you've both been through and want to minimize any of that for Jackie, he deserves a chance to be free of those drugs for awhile at the very least. I am sure it's not going to be an easy task, but his father and I are committed to doing this for him since we don't think the drug was helping the aggression much anyway there's not much reason to keep him on it then. :p

Now to see if his doctors will support the idea. I think they will, but it remains to be seen. I'll post more about it after today's appointment. :)