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Risperdal has won FDA approval to treat “symptoms of autism” in children, as reported on Friday, October 6th, in Reuters and in many other media outlets. Risperdal, which is manufactured by Johnson & Johnson, can now be used to treat aggression, “irritability,” and “deliberate self-injury.” FDA approval was based on two eight-week studies in which 156 autistic individuals (aged 5 – 16; 90% of those in the study were aged 5 – 12) took either the medication or a placebo.
Johnson & Johnson said Risperdal does not treat core autism symptoms such as communication problems and trouble with social interactions, but “it has been shown to be beneficial in treating the associated behavioral disturbances that can interfere with school, learning and family life.”
Risperdal, which has been sold since 1993 for short-time treatment of schizophrenia in adults, is Johnson & Johnson’s biggest selling product.
My son Charlie has taken Risperdal since the spring of 2004. We did not want to put Charlie on medication; it was something near a last resort. Charlie was not in the right school situation at that time; he was getting older, getting more aware of the world, and getting more frustrated more frequently; his self-injurious behavior (head-banging) was worsening, as was his aggression against other people. Learning had come to a sad halt. Charlie was not happy and who could be with the expectation of daily tantrums, daily humiliation in front of his schoolmates, and no one sure what to do?
The medication was to be a starting point—-the pediatric neurologist emphasized that Charlie’s education was the most important thing that would help him.
And that is what medication, and certain biomedical treatments, can do for autistic children. They can help them function better in terms of getting some kinds of very difficuly behaviors more under control. They are never the answer. The medications might help to control anxiety, impulsiveness, or aggression, but the tendencies to these are still latent in Charlie. Teaching him how to cope with his anxiety is a slow process, often with many stops and starts, but teaching a child to pause before doing something, to learn to ask for what he wants instead of grabbing or acting out, to sit down and use a pencil or do a puzzle when he is agitated, is the best medicine of all, with the most long-term results.
And with the best side-effects, while those of Risperdal, and any medications, are a challenge in themselves to deal with. Risperdal causes weight gain, constipation, and drowsiness—-it was very clear that Charlie wanted to eat more after he started taking Risperdal. He did not gain as much weight as some children have (30 or so pounds, in some cases), but Charlie did have periods when he seemed puzzled and even uncomfortable with his growing stomach. We try hard to make sure that Charlie exercises every day (bike rides, swimming, and walks). The side effects of this have been not only that he is stronger: The exercise seems to help Charlie cope with his anxieties, by giving him a physical outlet for his energies. Plus, Charlie gets a huge sense of pride and accomplishment to be biking down the street (near the sidewalk, always), beside his dad.
Ever since Charlie was diagnosed with autism, we have heard talk of a cure, as in this recent essay by Alison Singer of Autism Speaks. We do not think that Charlie needs to be “cured” from autism (as I wrote in Dangerous and Misleading: On cure, lfa, hfa, and autism). We do think that Charlie needs to be educated and to be taught, and that education helps him the most and has the best side-effects.
More and new medications and medical treatments might be developed as a result of the research Singer refers to, but it seems to me that we ought to take the case of Risperdal as an admonitory example. There is no “magic pill” for autism. Medicine comes with side effects and is only the first step for the best “treatment”: Education of autistic children in ways most appropriate to their neurological wiring, learning styles, and their dignity.
My son was born as an emergency C-Section. He had swallowed meconium at birth which the doctors believed was the cause of him having two massive seizures. He was in intensive care for 2 weeks. He was on oxygen and fenabarb to control the seizures. He had multitudes of tests done on him as a newborn and nothing came of a result of any of them. He was on medication for the first year of his life to control Acid Reflux and special formula to maintain his lactose issues.
At birth, the doctors were unable to tell me what outcome of all this would have on his life. They simple put, he could be fine, or he might have issues. We don’t know.
Since the age of one, my son has successfully not been on any medications. However at this time is when the behaviour issues started to come. He repeatedly was asks to leave a multitude of dayhomes and daycare facilities for biting, hitting, not listening, and temper tantrums. At the age of three I was able to find him a dayhome that worked with his special needs. He also started going to a school that was designed for children with “behavioural issues” After spending 1 year at this school, he had a Teacher, Speech Pathologist, Occupational Therapist and 2 Psychologists that worked very closely with my son. All which said….they have no diagnosis. They don’t know what is “wrong” with him other then he has uncontrollable behaviour. The school then found a different school that offered more attention to his type of behavioural concerns as they tended to a variety of mental health issues and the new school was strictly for behaviour.
My son is now 5. He has been attending this new school for 5 months and he has learned some new skills to help stabilize himself when he starts getting worked up. However, with that being said I have also consulted with a child Psychiatrist to medically assist with my sons progression. The Psychiatrist has not been able to successfully diagnosis my son either. The psychiatrist feels however Autisim and ADHD are not the root cause. My son has been on Clonidine which was effective for only a short 2 months. He then tried Addrell which made him extremely aggressive, almost psychotic like. He has now been on Risperidone for the past 3 months and it is now starting to lose its “calming” effect on him. He is resorting back to his old ways. He screams beyond belief, hits, punches, says awful things and doesn’t listen to authority at all.
I am beside myself with what to do. The doctors are unable to diagnosis him as they see a little of everything in him however not enough of anything. If that makes any sense? The medication doesn’t seem to have any lasting effect and school in which he attends is great, however is just simply not enough.
I am at the point where life in our household is coming to a screaming halt. Everything is suffering because of this. My son is unable to participate in regular activities because I don’t know how he is going to respond. We don’t go to birthday parties, throw birthday parties, have friends over and I can’t leave him with anyone else as his behaviour scares people and their children. Unfortunately there is not a lot of support out there for parents in this situation as we really are the exception to the “norm”.
What do I try? What do I do? Do I consider institutionalising my son? (I kills me inside to even consider it. I feel like I am giving up on him…cause really…isn’t that what it is)
Suggestions, comments or thoughts are very welcome.
I have a 10 year old son, who when he was born at six weeks old knew something was ver wrong. Nothing has been “normal” sense. My only advice, and I think you are doing an amazing job. Is maybe to look into a RTC “Residental Treatment Center.” or maybe a Hospital Like UCLA. I sent my son to both. he stayed at UCLA for 110 days. They test and test – and try different meds. Has anyone suggested bipolar or schizophrenia like behavior? I know it is hard – My son is bipolar but you treat the symptoms and worry about the d/o later. The rages and the biting and the rest with proper meds and therapy can help. You need the right team, the right home, the right envirment. Get him to an Psy Hospital like UCLA and have an evl with proper testing done. The d/o is also comordity with others- like learing and senory. Life will get better. You are not alone. I heve 3 kids with varing degrees of illness. At times it sucks, but digs your hills in and remember, God gave you this child because you are the strong one and you are blessed to handle him. email me if you need any help or need a contact at UCLA. Good Luck…
Our son who is 18 (though is about the size of a 10 year old) was just put on Risperidone 3 mg. He is diagnosed with ASD. He complains that it makes him feel dizzy. He was on seroquel and continues to ask to be placed back on it. We are trying a new regime of adderall, prozac, risperidone. It makes me cringe to have our son on so much medication. Though, I have to say the improvement is amazing!!!
He daily behavior is almost scary. We have to keep asking him if he is ok..He is just being a kid. We are so accustom to screaming all the time this is new to us. He sleeps with the risperidone, but I worry about the side affects. He has been ill the last few day. (I hopes its just the flu).
He gained 30 lbs on Seroquel.
I am still out (jury) about risperidone. So here I sit doing the cyber research. Thank you all for such great imput.
Risperdal was prescribed to help with the combination of his anxiety and lack of focus. The Anixety happens when he is at school or in social activities where he tends to act very silly (beyond normal) to counteract how he is feeling. This combined with the focus issue pointed the doctors to Risperdal. The Ritalin seem to help with focus at times but did not help the anxiety. Not sure what we are going to do at this point. Talking to the doctors tomorrow.
Thanks
@Dave, I didn’t see those behaviors in my son when he started taking Risperdal—-may I ask for what the doctor prescribed this medication for? We tried Ritalin very briefly with my son (a few days) and indeed saw the increase in his being able to focus, but a huge increase in his anxiety.
Sometimes my son has had waves of crying too of late—–he has been on Risperdal for awhile and, in my son’s case, we’ve attributed a lot of it to adolescese; his mood swings can just be extremely sudden. Thank you for writing about him—
My is son is 9 and we have been down the Autism road several times in the past 5 years but he is always denied a diagnosis. He has problems concentrating in school, staying on task, and transitioning between activities, and this has caused difficulty for him at school and the teachers keep pointing us back to the professionals. We tried Ridalin for a year and it seemed to work on his concentration but not his anxiety. We have been trying risperdal for a couple weeks now and all of a sudden he has these waves of crying and he can explain what is wrong. He starts rolling around on the couch and acting bizarre and then it stops. We have been told that for the first few weeks one can experience higher levels of anxiety before the drug takes it’s proper effect. Has anyone else exprienced this in the beginning stages of taking the medication? Thanks.
I have two ASD children one on meds and one not…And personally what I think is needed is more schools and teachers/paras trained in handling ASD children so they are taught in such a way that the child is compelled to learn by using the unique traits that are inheriant in each of them..ASD is not a cookie cutter disorder..thusly a cookie cutter approach to teaching ASD kids wont work..not even for non ASD kids..
I dream for the day when I can send my son to school in a enviroment that embraces all of him..and helps him be who is was born to be..and I dont feel that to be drugged everyday of his life to fit into “” our”" world..
ditto to that last paragraph, Tomsmom……..
If I could have done without putting Tom on meds I would have. I was completely exhausted emotionally from trying to help him and seeing whatever I tried fail or at least not “stick” for very long. (Far from “last resort” I saw everything as the “best hope” and when the improvement didn’t come I would be devastated.) Tom started on lamotrigine which is an anti-seizure med about 10 months ago, and risperdal was added for aggression about 6 months ago. He is on minimal doses of both, and both are given to him in milk twice a day. He has gained weight, but was skinny to begin with and has only just started to develop a oticeable “paunch” (Which none of us find amusing as his clothes don’t fit right anymore and that irritates both him and us!)
His real problem is anxiety and dealing with not being in control. He is in a special school now (2:3:1) but still acting up pretty much daily. Our focus now is on his emotional state and how he can learn to identify and deal with what are extreme, one-note (anger) reactions to everyday stresses. He’s verbal but not communicative: talks a lot but doesn’t really say much. He did just begin a new art therapy program on Saturdays where I was afraid they were going to ask him to leave he was getting so bad . . . but just yesterday he made it all the way through the 45 minute session and even finished the project!
What seems to be true is that ANYTHING, any change, any novelty, any slight variation in routine OR expectation–and the latter you don’t even know because he can’t tell you–will trigger some sort of reaction/regression. It’s part of the dx and it’s just the way it is, until he gains (slowly but surely) a better capacity for dealing with what happens than he has now. For a kid with sensory issues, fears and needs it’s a really tough world . . .
@chrstine,
no, we have not experienced this. One thing, though—-after my son had Risperdal for awhile, he sometimes had different reactions to food. He liked hamburgers a lot and then, about 2 summers ago, he started throwing the plates with the burgers—we couldn’t figure it out. A friend whose son has also been on some meds suggested that the meds (the Risperdal) might be affecting Charlie’s sense of smell and taste and that, what had once seemed something he liked, now seemed nauseating. Not sure if that helps——-I can say, both the effect of the meds and the side effects have varied over time with Charlie.
My son is 4 and has been on risperdal for a month it has really helped with the aggression up until 2 days ago…he is worse then ever all of a sudden…totally out the blue. It seems he wants to play most of the time but he full on attacks me. He has also been vomitting about 1 or 2 times a week. Has anyone else experienced this???
TAke some data!
While he is off the meds take some data on the nose twitch snort thing, on one chart mark out half hour intervals and just make a tick if you have observed any of the behaviours in the last half hour. It is the easiest way to take data in the home. Do this on a computer and then just print out a new page and put in on a clipboard each day.
Also set up a seperate clipboard with the same interals but with a column for OCD behaviours that you were trying to reduce. DEscribe them clearly at the top if you are getting other people to observe and tick the chart too.
We did this with our Bratty on her Whooping Happy episodes, Squealing tantrums and toe touching, shelf touching and other OCD behaviours before and after meds. The squealing tantrums were divided up into equipment failure (loss of internet, video getting chewed etc) and “moving something” where I might move a coffee cup or a book while she was in the room and she would become apoplectic about it until I put it back in the exact right position.,
We also did a seperate chart upstairs for sleep routines, I copied those charts from Mark Durand’s “Sleep Better” (Amazon)
When we first tried Respiradol, the screaming got worse and she clung to me in terror, something didnt feel right! We took her off it. Then we tried Olanzapine and she was fine at first, but I noticed some head shaking, so I took some data for a few weeks, and she got over it. The sleep improved, the OCDs went down and the Whooping reduced.
But the weight gain was extraordinary, all on the abdomen and when the squeals and behaviours crept back (I couldnt take my flip flops off one day after we had been to an indoor pool, and I my feet froze as it was November! she just couldnt tolerate the change to Ugg boots and got out of her seatbelt and I almost crashed the car)
so I went back to the Psychiatrist and we did a short transition from Olanzapine to Respiradol, a 1/4 of a miligram at a time. She took to it this time, whatever discomfort it caused her the first time seemed to be tolerable and it worked well.
The weight has come off and she is now a healthy weight, the sleep is great, we are settling her by 9pm and she sleeps through 9/10 nights, and she can cope if a DvD is scratched and won’t play. She is problem solving her way through a broken DVD at the moment. We ordered a new one on EBay, and she persists with asking us to play the broken one, but there is no screaming when it wont play. A big change from 12 months ago.
We actually buy 4 copies of every DVD that she likes usually, and own 2 VCR players, with an accidental damage option. When one breaks or chews a tape, we replace it with the spare, and take the broken one back to the shop.
We have 2 portable DVD players in rotation too.
That is probably more information than you needed but I really think you should be taking data and describing the behaviour that concerns you, and measuring it. Sometimes we notice something more because it is unusual, and we need to take data over a number of weeks to truly measure whether it has got worse or better. Better that than to panic unneccessarily. Parents have enough to worry about!
Good luck with your meds. I hope some of the young Autie Adults and Teens who read Kristina can enlighten you on how it makes them feel too.
I can only give you the parent perspective.
xx
My son has been on Risperdal for about 4 weeks. He is 5 yrs old and has PDD, he has extreme OCD and anxiety, putting him on medication was the last thing I wanted to do, but I have tried alot of other things. He is on the GFCF diet. It seemed his behavior was getting better but he keeps on what I call snorting his nose and then continues to clear his throat. He has been doing this more and more but I tired to see if this is a side effect from the meds and don’t see it listed anywhere. My OT thinks it is a tick he has developed, as of yesterday I stopped the medication. This only started after the doctor upped his dose to .50 mg. Has anyone had this side effect and did it go away after stopping the meds? I’m really concerned I let it go for about 2 wks thinking it was just allergies at least that’s what my ped. thinks. He has never had allergies and it’s almost like an involuntary thing so I really think its from the resperdal. Please help
Autism has many presentations and some of these are difficult if not impossible for a novice on ASD’s to pick up. Your opinion that this child does not have an ASD does not mean he doesn’t. Also the amount of time you describe spending with this child especially if you are skeptical about milder forms of ASD is not sufficient to pass judgment. What you call lazy and self absorbed parents may actually be presentation of some of the involved genetics that are usually seen in parents of autistics, because it is increasingly being seen as genetic in most cases. My last point is that it is a well known and observable fact that most children tend to not display many problem behaviors when not with their usual carers. My moderate-severely autistic daughter can have days with her grandmother where she shows little of the extremely destructive/self harming/aggressive and anti social behaviors she does at home. And I am far from a self absorbed or lazy parent.
My grandson is 9 and normally weighs about 55 lbs. But has gained about 1/4 his weight in the 3 weeks he has been on Risperdal.
I find it very disturbing to me that my grandson’s parents have agreed to medicate their “so-called” autisic son with Risperdal. He has had from time to time behaviors issues at school. But I think his behaviors have been learned due to lack of real solid consistent parenting. Both the parents are self-absorbed and willing to take any advice a doctor or teacher suggests or demands (as the school pretty much did). I think all are lazy as I spend as much as 8 days per month with my grandsons. Normally at least 3 days in a row overnights. I find both to be normal kids with a lot of active energy.
Given that he does not really have these self-destructive “daily or even weekly” episodes, I find it more destructive to have him on a “mind-altering” drug. He has gained a terrible amount of weight in a short time. The last time I checked being overweight was more of a health issue than not setting in your chair for the teacher.
Please give me some input on my feelings on this. Thank you.
Wow…that is a terrible thing to say. You ought to be ashamed of yourself! You do not walk in either parents shoes!! Sometimes medication is necessary. Be more supportive and less opinionated!!
I feel like I’m surrounded by land mines. It makes me want to grab my family and run away to an island. But that’s not an option. At least here I found some informed dialogue, and that helps. It has been hard to find. Thank you for the honestyl
@Hammie, thank you so much for writing this and especially for noting the side-effects, changes in meds, and the ups and downs. We actually upped Charlie’s Risperdal dosage in the summer and he’s been eating less—exercising a lot too.
Initially when Charlie started on Risperdal he too gained a lot of weight in his abdomen and his swimming was hampered—he didn’t even seem to want to do it as much!
I wanted much to take him off it when he was well-settled in his school. But other things keep coming up, new situations, new troubles with a transition or some such, and he needs it, especially as the behavior that the Risperdal has helped to manage (along with lots of good teaching) is a self-injurious one, head-banging.
It’s such a hard step for a parent to do; Charlie not having the language to describe how he feels. Thanks for this comment again!
Hi Kristina and all of you who have contributed to this discussion, especially the guys and gals who have taken the medication ourselves.
We started Bratty on meds this time last year, after what was close to family breakdown. Both my children have autism, but I finally “got” what the people with typical kids AND autistic kids got through with the worry about my Bratty, and more worry about what effect her behaviour was having on her brother.
Our first go at Respiradone was a disaster as Bratty got worse; The intensity of her screaming went up and she seemed to be terrified, holding me obsessively while screaming. I ended up at the after hours surgery with a locum doctor reading up on side affects for me “irritiablity and head aches” But he told us it was safe to give paracetamol so we went home and stopped the Respiradone and gave the psychiatrist a call. Plan B please!
Then we tried Olanzapine. An old fashioned medication in the same group but it seemed to do the trick; at first. We had 6 months on it with Bratty putting on a lot of weight. She was underweight to begin with, but this was an unhealthy gain; on her abdomen which meant vital organs. Incidentally Kristina; she learned to swim at this time! I think she was almost there but with the extra body fat she found it very easy to float around and began to swim like an otter. I took her every day for O.T. reasons. (Joint compressions make Me icky)
It did calm down a lot of her obsessive compulsive behaviours and tantrums. Her very loud whooping at the computer or video moderated, and she started sleeping ALL NIGHT 9 out of 10 nights a week.
The weight gain got too much and the benefits started to fade so we consulted again with the Psychiatrist and slowly tried Rispiradone again, phased in over the olanzapine, with the olanzapine phased out.
She took to it. 6 months down the track she has lost all the puffy weight that she put on, and has had a growth spurt (she is nearly 9) We have actually have clothers that she had grown too big for, then they fit again and now are too loose! She has to grow back into them.
We tried reducing the meds when she changed schools (ABA school 1:1 tailored and supervised full time intervention with Psych’ grads as tutors and M.C.A.B.A. supervisors)
Her anxiety levels went down and she was so happy we cut the dose by 25% without any change in behaviour. Then the holidays started and life went to hell. So we are back up to full Quicklet. (I keep the psychiatrist informed)
When school goes back I will monitor her anxiety and OCD indicators, ability to cope when things don’t work etc. And then start chipping the corner off the tab again.
Hopefully in time, in her new school setting we can get her off it completely.
Her verbal and picture language is all request based. Her receptive language is ahead of that but her expressive language is non-existent.
We find that her needs are much more sophisticated than the language she has been given; hence the melt-downs.
her violence was directed at me. Kicking, broke a tooth, scratching and lying on the floor kicking her legs in the air. All that subsided with the medication.
I am very glad to read all this and glad to hear that someone who I admire for their honest approach to autism, understands and took a similar tack.
You inspired me to ‘fess up on my blog today.
xx
hi. we have just started our 18 yo son on risperdal oral solution one week ago. this was after he had become agressive & socially withdrawn due to refusal to take medication in pill form.
we are currently hiding the dosage in his food & drinks. my question is are there any foods or drinks which counteract or nullify the efectiveness of the risperdal. also he insists on heating his food in the microwave before eating will this affect the dosage
regards
Brett
We have plenty of those “emotional, up-and-down” sort of weeks, days, moments, months…….. I still remember when Charlie was able to hear “shoe” and touch a shoe and “ball” and touch a ball—-he had been struggling with any kind of receptive language and did not seem to know what any words meant; he was preschool age.
I like what you said about instinct kicking in and that wanting to make it just all come together can supersede all other thoughts. Sometimes maybe “cure” is just a big generalization for a parent’s wish that their child keeps moving forward, learning and growing.
Hope next week is a bit less up-and-down……
I don’t know how to post links here so hopefully this comes through somehow.
Seth Godin (one of the foremost experts on the social aspects – and many other – aspects of marketing) posted something to his blog today that may as well have been written specifically about these magic pills.
http://sethgodin.typepad.com/seths_blog/2008/06/the-cure.html
This is something that resonates at least with me if not most of us. He’s right and I understand why he’s right. We’re all motivated to do whatever we can to help our kids live to their fullest potential, even if we go about it in very different ways and with very different assumptions.
There are more than a few days where we feel pretty desperate in that pursuit. I imagine those days are common when we’ve said something like, “I just wish I could wave a magic wand and make his/her life so much easier.” I think it’s just instinct.
My son struggles and I’ve had to work hard to not just go pick him up every time and try to ‘make it better’. Then there are the days like yesterday when on the 1,000th time around he accomplishes something (this time, he pointed to the letter A on a flash card!) and we celebrate like we scored the game-winning goal in the World Cup.
It’s days like that when he helps me ‘get it’ that this is hard work, but the rewards are limitless. He keeps on persevering and trying hard, but I still keep wanting to fix it more often than not. Deep down, that allure of the cure is compelling. I’m not remotely sure what ‘fixing it’ would mean really, but those are the words that keep coming into my head.
But God I love it when he accomplishes something new, and he KNOWS he did it. He’s so proud of himself, and just writing that brings tears to my eyes. What I hope he understands is how proud I am of him on those days and all the other days too.
I don’t know how I went from Seth Godin to there, but oh well. It’s been an emotional, up-and-down sort of week I guess.