No Magic Pill for Autism: On Risperdal and the Importance of Autism Education
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.
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POSTED IN: Education, Health, Neuroscience, Psychiatry, Psychology, Treatment

67 opinions for No Magic Pill for Autism: On Risperdal and the Importance of Autism Education
Kassiane
Oct 8, 2006 at 7:02 pm
I took Risperdal for a while, until I got tardive dyskinesia (the tongue curl is still there, fortunately the eye twitches are few and far between). It helped with sleep, anxiety, wanting to scream and throw things, and with some sensory issues (which make me want to scream, throw things, and hit my head on the wall). But I was just as autistic on it as I am off it. Topamax (seizure med) has similar but more subtle sensory effects.
A friend of mine, upon hearing of the approval of Risperdal for autism, said that it’s approved for self injurious behavior and for parents *grin*. We’re so awful around here…
Kristina Chew, PhD
Oct 8, 2006 at 7:34 pm
Interesting what you note about the eye twitching—Charlie has been squeezing his eye and squinting some.
melanie
Oct 8, 2006 at 8:12 pm
My son takes risperdal primarily for sleeping difficulties, he now sleeps, and because he is sleeping he is learning, slowly, but learning nevertheless. It does not seem to help very much in terms of attention span or behavior.
Kristina Chew, PhD
Oct 8, 2006 at 9:51 pm
Melanie, that’s great—-Charlie tends to have a hard time falling asleep, but once he is asleep is out. The Risperdal has helped him mostly with his behaviors. How old, if I may ask, is your son?
zilari
Oct 8, 2006 at 10:34 pm
I took Risperdal only once and it was utterly horrible. My brain chemistry did NOT like it.
Part of what worries me about the recent “approval” of this drug is that doctors might start prescribing it much more capriciously, without even making themselves fully aware of the associated risks.
I’m also curious about the ethics of, say, having parents take any medication first themselves (at least once) that has been recommended to their child. This is kind of a bizarre idea I realize, but it would be an interesting one to explore.
And, I’m also wondering what parents of nonautistic children would do if they were told to put their children on neuroleptics for things like “talking back” or bullying others…would it actually happen?
melanie
Oct 8, 2006 at 11:31 pm
yes, like I said We only use it at night to help him sleep. We dont see any benefits really during the day. We have seen no personality changes still our sweet(mostly) little 5 year old boy :)
melanie
Oct 8, 2006 at 11:32 pm
before risperdal, he might be up from a am till 5 am several nights a week, then his learning would suffer, and of course he would want to sleep it off during the day.
melanie
Oct 8, 2006 at 11:33 pm
sorry 1 am to 5 am
Kristina Chew, PhD
Oct 8, 2006 at 11:58 pm
I do see medication as a “tool” (not quite the right word) to help Charlie. Not for something like learning to pay attention or “talking back” (in his way), but for helping him to be in a condition that enables him to be in school and do all right. He seems as sweet as ever, too…..
Zilari, I really thank you for sharing your response to Risperdal. And your admonitory words about the potential for overuse of the medication—-it was a last resort for us. And the side-effect of a seemingly unlimited appetite in Charlie has been very trying to deal with, but we seem to be managing all right now. I do wonder how it feels in his head and brain after taking the medicine—-I supposed if parents were to try taking it too, we would have to make sure our systems were checked-up and all right……sort of like a taster checking the king’s food in case of any dangerous substances.
Someone
Oct 9, 2006 at 12:54 am
Risperdal is great for people with severe OCD (which is pretty common among autistics). You just need to be careful about not overdosing.
Kristina Chew, PhD
Oct 9, 2006 at 1:44 am
Thanks, “Someone”—-when one’s child does not have much language, it is difficult to know exactly what dose is the best. Hence, one must be even more careful.
zilari
Oct 9, 2006 at 1:45 am
Kristina - your comment about the taster checking the king’s food is sort of what I had in mind.
One thing I’ve learned from reading about people’s responses to medications is that despite the fact that we’re all human, different brains respond very differently to things. Sometimes it is difficult not to let my own experiences color how I think a medication feels. I’ve read accounts by people taking Risperdal who say they don’t even notice anything different, they just feel calmer and less reactive.
So perhaps it has that effect on some people, but on me it seemed to indicate a possible susceptibility to Neuroleptic Malignant Syndrome because it did weird things to my heart rhythm and caused severe dizziness and complete detachment from my cognitive faculties (that is, I couldn’t think straight and it was hard to remember I even existed. And forget about doing homework.).
Judging from how you’ve described Charlie, it doesn’t sound like he feels the way I did on this medication — he sounds pretty alert and able to learn and emote and such. It just seems like so much of psychiatric medicine is taking stabs in the dark, though, considering the varied reactions different people have to different things.
Kassiane
Oct 9, 2006 at 2:06 am
I wonder what doses they tested…
Zilari, I’m assuming you’re an adult when you tried it. I’m also assuming they started you somewhere in the 1mg range. For perspective, I have full out hallucinations anywhere above 0.25mg.
They really are going to need to make smaller tablets if they expect autistic kids to tolerate it in the real world, we are notorious for stuff like that.
zilari
Oct 9, 2006 at 2:52 am
Kassiane: I was 17 when I was tried on Risperdal — nearly an adult, I suppose. (But I am, and have always been, pretty tiny — 5′3″, around 100 lbs has been my set point for years now) They started me on 0.5 mg; 1 mg tablets but I was told to break them in half, which I did. I don’t recall any actual hallucinations, unless you count having a completely distorted perception of space that made the wall seem like it was on the ceiling…
Kassiane
Oct 9, 2006 at 3:54 am
OOH! Thats like what I got on .5mg! and my weekly pill organizer was the most fascinating thing EVER, It was 4 dimensional. And a log was a mountain lion..and the patterns in the wallpaper were just, like, woah. They had hidden pictures only I could see.
I think that was the first time since I was about 10 that I layed on the floor and stared at my hands for hours, at the time I was 21. (and i was tiny too, 5′5″ in shoes, 115 or so. Now I have 20 more pounds muscle but a LAZY LIVER! GAH).
Except for the lactation thing, a lower dose was great…nothing like the nightmare that was Geodon. Or Seroquel. Or Abilify. Or Zonegran. Or Trileptal. Or…..bleh.
Jenni
Oct 9, 2006 at 7:05 am
WOW. Thank you for sharing this. I had 2 doctors push this medicine on us when my Mike was 5 years old. I brought it home, got on the internet, realized that this med was like blowing up the house because the faucet leaked (in our case) and *flushed* them. We then went to his pediatrician who I told what I had done. She agreed. She prescribed Remeron to help him go to sleep at night. It worked. He took that for 4 years. I then took him to a DAN doctor who suggested we try Melatonin. It seems to be enough for him. During the day, he takes Focalin XR for school.
No - I don’t think our solution is perfect. He still deals with anxiety (less than before though. YEA!) and occasional meltdowns. I hope when he reaches adulthood they have more options for us.
Jenni
Oct 9, 2006 at 7:11 am
Kristina, you said: “Charlie tends to have a hard time falling asleep, but once he is asleep is out.” Have you looked into Melatonin? It seems like it might be ideal for your situation. Just 1mg made a huge difference for Mike.
Kristina Chew, PhD
Oct 9, 2006 at 10:17 am
Jenni, do you give Mike the Melatonin every night? Charlie has done better with sleeping since we put him on a better bedtime routine. Sometimes he gets so excited about going to school that he can’t go to sleep—-last night, he did not fall asleep till midnight!
melanie
Oct 9, 2006 at 11:43 am
Melatonin never worked for us, I mean never. what is focalin xr?
Jenni
Oct 9, 2006 at 11:52 am
Yes, I give it to him every night. I was really glad that it helped because I was having a problem getting insurance to pay for the Remeron. Mike also thrives on the same bedtime routine like Charlie. That’s so cute that he gets so excited about school the next day!
Focalin XR is an attention med that lasts about 6 hours. :)
shan
Oct 9, 2006 at 12:37 pm
I was on Risperdal for a couple months early this year, to help with sensory problems (nonexistent ability to filter, and noise sensitivity). It did help noticeably with those, but gave me a terrible nervous energy that wouldn’t go away… I was twitchy, couldn’t sit still, couldn’t stand not doing something, anxiety through the roof. That was on .25 mg/day (I am not at all tiny! heh). Had to knock myself out with benadryl every night or I’d never be able to lie still to fall asleep. It just kept getting worse, so I had to quit taking it.
Next year I will live somewhere where my neighbors are not inconsiderate jerks though (I hope) so the noise sensitivity won’t be as much of a problem…
Anyway these meds can do all sorts of things to different people, I really hope this doesn’t encourage doctors to start prescribing Risperdal without a very good reason and close monitoring. The only one of their things it could remotely help me with is self-injurious behaviour (until I started doing it from the anxiety) because before I went on it I was banging my head on things when my neighbors had their music on.
Kristina Chew, PhD
Oct 9, 2006 at 1:08 pm
Zilari, Charlie is practically as big as you are……. we keep his dosage low (our neurologist is always saying we could go up but we seem to have found the right combination). He hasn’t mentioned Focalin……Charlied was briefly on Ritalin (very briefly), with no and bad results.
Kassiane, did you note any difference between Risperdal and Seroquel?
Lisa
Oct 9, 2006 at 3:46 pm
Kristina,
We had P. on a small dose (I think .25 mg when he weighed approx 60 lbs., but it was quite a few years ago and I may not be remembering accurately)
He was on it for 2-3 years in middle elementary school and for him it acted as an anxiolytic so that he was able to learn other strategies for anxiety management.
Now he is on a small dose of zoloft (12.5 mg) for migraine prevention and takes cod liver oil which manages his sensory sensitivies.
I agree with you about medication as a tool only.
Best,
lisa
Kassiane
Oct 9, 2006 at 6:55 pm
*giggles*
Oh did I ever.
They gave me Seroquel to help me sleep, right? So I take this little pink 25mg pill after failing miserably to split it and chow down everything in sight, pretty much, in 15 minutes. THEN the restlessness sets in. And after that, what can only be described as euphoria.
I spent over 8 hours running stairs the ONE night I was on Seroquel, and ate everything I could get my hands on.
In stark contrast, I slept well on Risperdal (nonverbal in the mornings, but Ive NEVER been a morning person), I didn’t have much in the way of food cravings-I’ve actually always been a pretty good eater, but I was on Topamax and Major Life Upheaval at the time, both of which can destroy appetite, so having a bit of an appetite back was a good thing-and Seroquel didn’t TOUCH sensory issues. Risperdal did. I got a black eye in the shower because my proprioception was off at first, but I also got my highest scores all season on Risperdal. Figures, huh?
Seroquel was SUCH a nightmare. And i have the dubious honor of having been on as many psychotropics as I have had birthdays, and of knowing how all of them work. Heh.
Ballastexistenz
Oct 9, 2006 at 8:35 pm
It was not a last resort. And you would have very rapidly discovered that it was not a last resort, if it had not “worked” as you wanted it to. Because you would have found something else that did, by necessity. Saying that something is a last resort allows for absolutely no hope when that last resort fails to produce the expected results. Because, after all, it was the last resort.
I know way too many people — myself included — who were given the “last resort” so-called treatments (I refuse to call anything that medicalizes behavior a genuine “treatment”), and were thus led to believe that there was absolutely no hope for us, because NO medication “worked”, and NO other thing tried before that “worked”. You and everyone else who calls things like Risperdal “last resorts” ought to be treated to a round of total but false despair yourselves until you understand how damaging it is to induce it in someone else.
Kristina Chew, PhD
Oct 9, 2006 at 8:47 pm
True. From the parental perspective, many things tend to feel like “last resorts”—I am afraid that we parents tend to subject ourselves and, as you note, others to more than a few rounds of “total but false despair.”
I also ought to note “it” did not exactly “work as we wanted it to”—it had effects of a certain sort.
Kassiane
Oct 9, 2006 at 10:04 pm
When I had the option of choosing a psychiatrist (back in the days of insurance…) because my non-chemical methods of controlling that which I wished to have controlled (major meltdowns, agitated headbanging suicidal fits in which I was somehow strong enough to throw my 200some pound cousin off me, dissociative blankouts, crying fits that made me puke, etc) I flat out asked if they beleived in last resorts. The winner was the one who said “no, there’s always another dosage, combination, dosage timing, neurotransmitter, something to try. ALWAYS.”
Same with neurologist. I requested the neurologist who didn’t believe in ‘well, this is as good as it’s gunna get, kid, so get yourself padded bed rails and you may want to think about a helmet’ (and at one point I WAS told that). I wanted the doctor who would try anything and everything.
I don’t believe in last resorts. Maybe because I’ve been on the brink of brain surgury, after that NOTHING seems extreme.
Lisa/Jedi
Oct 9, 2006 at 10:46 pm
I really appreciated this post, Kristina. It’s a difficult topic, particularly when these drugs have been used abusively against some autistic people, & I feel very ambivalently about using them with my son. However, I feel much less ambivalent when I compare what B is able to do with medication as opposed to without it. Without the seroquel B’s anxiety would not allow him to cope with school, to enjoy playing with his beloved legos, or do many of the other things he loves to do. I know this because I have lived with him before we tried medications & tried to help him cope with his extreme distress. I believe that what we are doing is in his best interest, even in light of the side effects (for B it’s mainly the weight gain). And we have never relied completely on medication to help B with the anxiety- he sees his psychologist at least monthly & sometimes more often for the cognitive/behavioural therapy that also helps. We are currently trying a new combination of medicines to help get him off of the seroquel, (zoloft + clonapin) but we can only wait & see how it works. It’s one of the most difficult parts of being B’s parent, dealing with the meds or no-meds issue, but he deserves the fullest life we can give him, & presently that means medicine.
Kristina Chew, PhD
Oct 10, 2006 at 1:25 am
Thanks, Lisa…… I think I am going to borrow your phrase, “the fullest life we can give him.”
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Oct 10, 2006 at 12:01 pm
[…] I do think the diet can be helpful; my own son Charlie was found to have celiac disease. The diet—-while certainly nothing like a cure or “magic pill”—has helped him to (I have to think) feel better (for one thing, gone are the rashes on his cheeks and torso that he had when he was a toddler). But what Charlie eats is only one part of the picture. His education, and the various therapies (speech, OT, and more) and some medication all contribute to helping him lead a good and full life: Just taking certain food products out of his diet has not resulted in Charlie being mainstreamed “in a matter of months” (Charlie has been on the special diet since June of 1999). […]
melanie
Oct 11, 2006 at 1:22 pm
we never tried gluten/casein because without M&m’s our son would go into ketosis, her really only eats chicken!
Jenni
Oct 11, 2006 at 3:30 pm
We took Mike to a DAN doc and he put Mike on the gf/cf diet for 6 weeks. He said that if it was an intestinal issue for him, we would see a difference in 6 weeks. So… we did it for 6 weeks religiously… and if there was an improvement, it was minimal. The doc said that from his experience, it’s 50/50. We were actually kind of glad. He has 2 things in his life that make him extremely happy - his Papap and pizza. :)
Autism Vox » Autism and Irritability
Oct 13, 2006 at 12:28 pm
[…] Treating “irritability” in autistic children and adults is what Risperdal has won FDA approval for. As reported in FDA approves drug for autism irritability, “aggression, deliberate self-injury and temper tantrums” are all classified as “irritability.” […]
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Dec 26, 2006 at 1:54 am
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Clay
Jan 5, 2007 at 11:54 am
Edith takes Risperdol. It doesn’t completely stop the screaming and self injurous behavior, but I do know from experience that after a missed morning dose, her school day was constant screaming and crying, so it does have some effect. Lately we have had to supplemen it with another medicine that helps her to stop screaming.
We initially tried Ritalin, but it only made her more hyper and nervous.
As for “tasting the kings food”, I wonder how dangerous it would be to take a drug when you have no symptoms that would require it, particularily, an anti-psychotic one?
First, nothing is really to be gained from it sense the parent doesn’t have autism, so any effects felt by the parent, if it didn’t kill them, or cause any brain damage would be effects on a person of their particular neural makeup. It would speak nothing of what the autistic child is experiencing.
Second, if taking Risperdol did kill or damage the parent, that would be bad consequences for the child.
Interesting idea though, just not sure it’s worth the gamble.
Kristina Chew, PhD
Jan 7, 2007 at 12:31 am
Clay, thanks for these comments—it has happened that one our relatives took Seroquel, which is like Risperdal for a while, but I’m not quite how she felt when taking it. Charlie and I are “wired” differently, indeed, I have to say.
susie
Feb 8, 2007 at 8:03 pm
My son, age 5 has been on Risperdal for 4 months now and I thank God for the gift of this medication. Our son was having terribke difficulty in so many areas, however, many MD’s called it “immaturity” or that “he’s just a boy and boys do not have the attention span to handle a full day of preschool”. My son also tested well since his symptoms were mostly prevelant in social settings with lots of stimulation.
Finally we decide to ditch the developmental peditricians and see a child psych. He initially suggested weekly therapy which we tried to no avail. Next was stimulants (Ridalin and Dexadrine). These made him more paranoid and anxious than ever. Finally, in tears, I told his psych. that my son truly needed something to help him function in a school environment. Up to this point, my son communicated well (although he was behind his peers) so we has always hoped it was not autism. His doctor thatn perscribed Risperadal…..thank God. I now have my son back! He is no different than he has always been, however, since the day he has been on the meds, he has not had one “meltdown” (he would have 3-4 a day) and accepts redirection and sings and lets us take his picture! I could and would never give anyone advice, but only share my story.
Kristina Chew, PhD
Feb 8, 2007 at 9:18 pm
Thanks so much—–we thought long and hard before putting Charlie on Risperdal and the main reason was to help him do better, and indeed his best, in school. Hope the good effects continue.
Autism Vox » Psychiatric Medications, Stigma, and Rebecca Riley
Feb 23, 2007 at 4:46 pm
[…] My son Charlie takes two psychiatric medications, Risperdal (since the spring of 2004) and Zoloft (since the spring of 2003). As I wrote a few months ago, our decision to give Charlie these medications was “to be a starting point—-the pediatric neurologist emphasized that Charlie’s education was the most important thing that would help him.” At that time, Charlie was not in the right kind of school placement for him: He was struggling to learn and we received almost daily reports of him “exhibiting problem behaviors,” from aggression to head-banging. Starting in the spring of 2004, we began to search for a new school for him. […]
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Uma
Jul 15, 2007 at 7:06 pm
Hi. my son is 14 years old, severly autistic, and this moment very self injuries, we had to put his helmet on, we are very sad, as this happened 3 years ago, he is on an antidepressant, mirtazon, and respirdal, cant believe this happening again, anyone have any ideas, he gets up in the mornings and has very bad nausea, and very anxious too.
Kristina Chew, PhD
Jul 15, 2007 at 8:53 pm
Hi Uma—-how long has he been on the medications? Does he have a behavior intervention plan for the SIBs?
My son has had similar issues — thinking of him and of your family.
candy
Aug 9, 2007 at 7:51 am
Found this site while tooling around the internet (which I tend to do all the time…especially when my child is in crisis..LIKE NOW). Son began respidal last August, to help with violent behavior(only against me), which had never before been present. Original dx was pdd-nos, sensory issues, and anxiety. Did it help him? I suppose. He did stop hitting me and destroying things…BUT he was always very close to the edge. Bad dreams and occ. night terrors entered. Zoloft was given…while great for some…was devastating for him…threw pet lizard so hard, it died…spoke of wanting to kill himself…stopped it after 5 days. kept spiraling down, rapidly. Doc suspected mood disorder as well…lithium given (bad news for him), then depakote(even worse…as. at this point was losing previously acquired academic skills…I suspect due to the confusion he complained of while taking the med). Taken off all, plus respidal(general feeling was it was making matters worse) and is now on abilify(tweeking the dose at the moment) and trying concerta as well. Bottom line is this…long before his dx (at 5. he is now 8), aside from his sensory issues. the one thing that sticks out from the time he was 3, was his ANXIETY. Doc always said it was just one of the many spin-offs of ASD, surely more to come as he matures. I have always felt the anxiety issue was the main deal….I feel it trumps all the other cards we have on the table right now….in fact I’m not convinced that the reason he is in crisis this past year, is due to the anxiety not being treated for so long…it would make sense to me that if it was left untreated for so long, well, wouldn’t ANYONE “just lose it”!!!!??? Last year, second half of school day was spent in typical class, with an aid, which I feel, added to his anxiety, as he is SO AWARE that he is different and the only one in the class needing this help….and just couldn’t take it and spent last 7 weeks of school year in partial hospital program (did not miss a day and went willingly!). The public schools, at this point in time, are not equiped to help him….though they gave it their best shot. My question is, as we continue to not get off this horrible med ride, has anyone ideas on how to best treat the anxiety? Also, I am very firghtened that lithium and/or depakote have caused permanent brain damage OR is it, as the doc suggests, that the anxiety is causing this cognitive setback? Any feedback would be helpful. Thank you for responding.
Kristina Chew, PhD
Aug 11, 2007 at 9:45 am
I am posting this for Lisa/Jedi.
Candy- Your situation sounds very similar to ours. Our now-11-year-old son was diagnosed at 6 with ASD & at 8 with severe Obsessive Compulsive Disorder as well (he added a Tourettes dx a year later). He went from a kid thriving in school (& OT, & speech, & visual-perceptual therapy) to a kid in a fetal position during the last 2 months of 2nd grade due to anxiety. At the time we were completely at sea as to how to best help him. We were fortunate to have an excellent child psychologist on the team, since anxiety had always been a component of Brendan’s ASD, & he recommended a good child psychiatrist, since it was obvious that we’d need to add drug therapy to the others in order to get him functioning again. We tried prozac first, but at the target dose things got worse (he had manic episodes that were completely overwhelming for all of us), so we agreed to the psychiatrist’s recommendation to start
seroquel. Seroquel is somewhat controversial, since it’s an atypical & not well studied in children, but it has been the only thing to get Brendan’s anxiety sufficiently under control to give him his life back (that’s really how it felt/feels). The only real side-effect of the seroquel that Brendan has experienced has been weight-gain, which was hard to see & had some emotional effect on Brendan for a while, but these days he’s really comfortable about how he looks. The positive side-effect of this is that we all became much more aware of our eating habits & the whole family has lost weight & eats healthier, with Brendan as an active participant in the process.
We spent the next couple of years trying to get him off the seroquel-we tried zoloft, but again, near the target dose for OCD he became manic (sigh). We’ve tried busepar (no effect), abilify (full-body spasms leading to immediate discontinuation), & finally added a very small dose of clonapin to take the edge off the anxiety, which works very well. At this time Brendan is on zoloft, seroquel, & clonapin. It sounds like a lot, but he’s doing wonderfully.
The key appears to have been his getting to the developmental stage where cognitive-behavioural therapy can be of benefit. He hit this milestone last winter & the difference is amazing. He has always been an active member of “the team”, but now that he’s 11 he’s started taking a leadership role in dealing with the anxiety. He tells us when he’s overwhelmed & often will tell us what will help. He brainstorms solutions for dealing with anxiety with us & his creativity is a big part of what makes things work. We use a lot of imagery & sensory tactics (incense, for example, to “smudge” the bad thoughts away) to help him get rid of the anxiety. He had rejected his left hand since the onset of the OCD & refused to use it, leading to weakness & clumisness, but just a few months ago we were able to help him to reclaim his hand using these strategies. His psychologist (whom he sees monthly) is delighted with the progress. This is not to say that we don’t deal with anxiety on a daily- sometimes hourly- basis. This past year of school was very difficult due to the anxiety & he held onto his grade-level skills by the skin of his teeth (& lots of help!). We are fortunate that Brendan gets an amazing amount of support from the school & school district in ways that don’t make him feel he sticks out or is terribly different than the other kids. I know it’s an unusual situation (based on my online reading) & we feel blessed! These days life is calmer than ever & he can now deal publicly with OCD triggers without meltdown (often without intervention) & the range of
activities he can participate in are increasing. Heck, we even took a family trip to Japan this summer, a long-time dream. My husband & I are feeling much more positive about our kid’s future now that we’ve seen these changes. Although I don’t like that he needs these medicines & still want him off of them, without them he wouldn’t be able to grow into a person who can do the cognitive work to deal with the anxiety, so I am no longer pushing to get him off of them. I can see a day when he won’t need them any more, though, & that’s a great comfort.
One thing that’s been a great help in our situation is that my husband is a physician, so we’ve had the benefit of his knowledge of medicines to guide us. I did ask him about the lithium or depakote causing permanent damage & he said that this sort of thing requires years of exposure to the drugs. With our experience of Brendan’s anxiety, it seems quite likely that the anxiety is causing the cognitive setbacks. We’ve certainly experienced this.
I hope this has helped! I really understand the terrible pain & confusion you feel as a parent when your child is suffering from extreme anxiety & how difficult it can be to navigate the medical system, try to help your kid in everyday life, & just keep things
together for yourself. Best wishes!!
Too Young
Feb 5, 2008 at 8:30 pm
Hi, my son is almost three years old and was just perscribed Risperdal. After researching this medicine I am really worried about giving it too him. He is non verbal and a very stubburn kid with a very high pain tolerance. He has mild head bang episodes that only last one or two hits then he realizes it is a bad idea. As for his melt downs they are few and far between and consist mainly of screaming and detatchment from surroundings. I was looking for some feed back for giving this medication to such a young child. At this point I am looking for a second opinion, i dont believe that with as mild as my son’s symptoms are it warrents takeing such drastic measures to control something that non autistic children do when they get upset. Any and all information is greatly appreciated.
Kristina Chew, PhD
Feb 5, 2008 at 10:00 pm
Hi—–this is my personal response as I’m not a physician! Who is prescribing the Risperdal? What do teachers or therapists think? What kind of educational program is your child in? Have you done a Functional Behavior Analysis to determine what might be possible causes/antecendents of the behaviors?
My son is 10 1/2 and has been taking Risperdal for some years for aggressive and self-injurious behavior (head banging 20 or so times in a row on the floor, doors, walls, furniture, windows, I don’t know what else). He is minimally verbal. Our pediatric neurologist only prescribed the Risperdal with us promising that we would work on behavioral/teaching program to help understand why the behaviors were occurring.
Before the medication, we worked on teaching, especially more ways to communicate (does your son use PECS? or sign language?). Also, you might want to consider any sensory issues—-my son has a need for deep pressure to comfort himself and somehow the head-banging is related to that, I think (sorry I am not more clear about this).
My son did have some head-banging and head-hitting at 3 and it was more of the type that you describe (also he had similar tantrums). We definitely did not think of medication when he was 3. I hope this is helpful—best wishes—-
Too Young
Feb 6, 2008 at 12:59 am
His neurologist prescribed it yesturday (.2 CC). He is in Early Intervention and is learning sign language since he is still non verbal. See we don’t believe his actions are serious enough for medication. It seems more like a typical toddler stuff and it is all stuff we can handle. He was only diagnosed 7 months ago with Autism and Epilepsy so we are still new to this. Besides EI, no other therapy was given/mention to us. Thank you for your response and we will look into the therapy. We just aren’t sure if he really needs this medication.
Kristina Chew, PhD
Feb 6, 2008 at 1:20 am
Again very personally—I would feel the same way. We did not give my son medication till he was 6 and then only after a lot of discussion.
One of the side effects of the Risperdal was a significant increase in my son’s appetite—he put on quite a bit of weight at first and this had an effect on his general functioning and behavior. He loves to swim, but because he was heavier, he could not do this as well (he also loves to eat, so suddenly he was trying to eat even more than he does……). I don’t mean to go overboard about this issue of the weight gain—since he was eating more, this had an effect on his stomach and toilet-training…..interesting times we had.
We are actually going to see Charlie’s pediatric neurologist this Friday. Prior to this neurologist, we saw another one who wanted him on Risperdal after one visit. Maybe you have seen this website, but here is more information, on Rx list.
Sign language was how my son first learned to communicate–he could not talk when he was 3.
The Medication Question Again
Feb 15, 2008 at 2:56 pm
[…] I’ve noted before, my son has been taking Risperdal and Zoloft—to help him manage his self-injurious and aggressive behavior and anxiety—-for a few […]
Amanda
Feb 19, 2008 at 3:26 pm
We are considering using risperidone to relieve some violent behavior for my 10 year old daughter dx autistic at age 3. These violent behaviors have emerged in the last two months, and she has never taken medication for ASD.
What do you think about adding an appitite supressant to the risperidone to avoid unsafe weight gain?
Emily is at a healthy weight now, and eats a balanced diet.
Thank you, and I enjoyed reading your thread.
Kassiane
Feb 19, 2008 at 4:04 pm
IM(NS)HO, adding a med to suppress the side effects of a med is, well, kinda dumb. Especially because the “appetite suppressants” either
a) have opposite mechanisms of action (namely, they speed up dopamine production while risperdal restricts it)
or
b) actually just have weight loss as a highly overplayed side effect, along with OTHER side effects, and thus it is a total crapshoot about what you’re going to get PLUS there’s the whole “oh this does NOT get along with my head” phenomenon–most often seen when mixing Topamax with antipsychotics for this purpose. Topamax causes weight loss in about 15% of people, and kidney stones in about 2%, and deja vu/jamais vu in 50% or so (straight out of the PI sheet).
If the violence is recent maybe it’s something in the environment. It isn’t like she lives in a vacuum.
Kristina Chew, PhD
Feb 19, 2008 at 5:39 pm
Hi Amanda,
A friend who was giving her son Risperdal also was giving him Adderall, for his attention and she did note that the latter was decreasing his appetite and that he was thing. As Kassiane notes, it seems that it might always be so clear what kind of medication has what effect on a child’s system….. Have there been any other changes going on? Of teachers or staff? How have teachers and/or therapists addressed the rise in violence behavior, if I may ask.
I don’t know if this is relevant for our daughter—Charlie will be 11 in May and he is entering puberty early. He has had (not lately, but in the past few months) some times of very sudden mood swings and “out of nowhere” rags.
Amanda
Feb 19, 2008 at 11:19 pm
Wow. Thanks for the rapid reply. I’ll respond to Kassiane first:
I’m sure we can curb any potential weight gain using diet and exercise.
Prescribing medicine for side effects is not unheard of. Maybe when we’re talking about psychoactive medication there is a different school of thought.
Em needed some antibiotic for something - I don’t remember - and she also was given an anti-diarrheal… to combat side effects. When I got strep throat the doc said you might get a yeast infection because of this medicine. If you develop a need for it I’ll call in a scrip for that.
I’m a virgin when it comes to medicating my child, and I appreciate the insight. I just heard about this risperidone, and it seems from what limited knowledge I have gained today, that weight gain is an undesirable side-effect.
I do appreciate your reply because I did ask, “What do you think about…”
In response to Dr. Chew’s reply:
Emily’s teacher actually alerted us to the violence before it was observed at home. We responded with usual punishment - loss of desired activities, and disposing of favorite objects. This worked for us for ten years.
Her violence has become more prevalent at home, whereby she is assaulting her sister and her favorite cat. How has the school addressed it?? She was sent home from school three times in two weeks for assaulting students and staff. When I informed her teacher of our desire to try some meds, the teacher has spent more time with Emily one-on-one, and allowing the aides to attend to the other children.
I attribute the changes in her behavior to the onset of puberty. She is developing quite early, as well did her sister dx normally developing.
We have switched to organic foods recently, and I wonder if Em is withdrawing from the chemicals.
This is a milestone I didn’t expect to encounter, and we’re dealing with red tape right now, but it will all work out in the end.
Thanks for your attention
Kristina Chew, PhD
Feb 19, 2008 at 11:32 pm
@Amanda,
It’s too much to think about sometimes, isn’t it?
My son has been on Risperdone for awhile—-it’s great to hear the teacher is spending more time with Em. Charlie’s behaviors were in part a call for more help and he can’t always tell us that in words.
This is the AAP’s guide to managing ASDs—-it has a section on using medication and suggests steps to consider as one thinks this through, and notes the types of medication. (I also like to check Rx List for side effects and other information.)
Another mother of a child (11) in my son’s class told me that she is also starting to think of medication for him.
Will respond more—-best wishes—-
Allegra
Mar 5, 2008 at 4:04 am
My daughter is 4 years old and taking 0.3 ml of Risperdal solution twice per day for treatment of Irritability, mood swings, self harming and severe tantrums, all associated with moderate to severe classic autism.
I’ve seen a lot of improvement, but we keep having to increase every few months because it stops being effective. She has now developed a throat clearing tic which can be very bad at times. I’m worried what will happen if we have to increase more, but we can’t go back to the way things were before the meds. She was so fragile and miserable and couldn’t control herself, it was impossible for her to participate in life as she would just scream and vomit and gouge her face whenever she was overwhelmed due to severe sensory issues. She couldn’t bath or stand to be washed or she would haveextreme panic attacks. she was getting sores and infections after 7 months.
I don’t know what to do, I don’t want her to end up with permanent tics or something worse, but I can’t imagine going back to life without the meds…
Is Medication Use in Autistic Children Increasing?
Mar 26, 2008 at 3:55 am
[…] noted that there is “ongoing debate” about the uses of psychotropic medications. Only Risperidone, an atypical neuroleptic, has received FDA approval to treat autistic children for aggression and […]
karen
Apr 11, 2008 at 5:38 pm
Hi, we just found out that our adopted daughter has autism. She is able to talk but is very behind her age.(4yrs) she screams,hits,has meltdowns, does not want to leave the house. We thought about trying some meds but I am afraid of what it will do to her. But we do need to help kinnzie too. we love her so much and only what to do whats best for her. karen
Kristina Chew, PhD
Apr 11, 2008 at 7:46 pm
@karen,
hi—we have used medication but only after a lot of educational therapies and teaching. Have services like speech, occupational therapy, specialized teaching, been suggested for your daughter?
my son has a lot trouble leaving the house on occasion, or going from one situation to another. we’ve found this to be a transition issue: he needs time to “switch” from activity to activity, place to place. also he sometimes has not been sure of what is going to happen next.
also, as noted, my son was 7 when we tried meds—he’d had lot of teaching and therapies prior to that and those have helped with tantrums etc. in the long run. hope this is a bit helpful—-
Kara
May 30, 2008 at 1:41 am
I am so glad I clicked over from the other post. I read the sheet that came with J’s Risperdal back when we started it in December. Either, it wasn’t mentioned or I somehow missed it but I now have an explanation for his sudden appetite increase. He also takes adderall XR so there was a balance in appetite until around the last increase of the Risperdal. Now he is asking to eat CONSTANTLY (but no real weight gain). It makes so much more sense. Now I will have to try to be less exasperated at his continuous requests for food.
Kristina Chew, PhD
May 30, 2008 at 2:38 am
Another family we knew gave one of their autistic boys (they had 2—fraternal twins) both meds. But the Adderall really decreased their son’s appetite (prior to this, the Risperdal had greatly increased it).
Denise
Jun 3, 2008 at 9:45 pm
Hi, my identical twin daughters are Autistic with varying behavioral issues and alot of compulsions and OCD, repetitive behavior, really bad PICA, obsessing on things and tantrums. They do NOT display self-injurious behavior in any way and they are not agressive to others. Yes, they scream and cry and take tantrums because they want something and obsess on it but their behavior doest not really fit into the behaviors that would warrant Risperdal. We were at Children’s Hospital in Boston today for an evaluation and the neurologist prescribed it for both girls! When I got home and looked it up on the internet I was confused as to why she would have done this considering they do not display those types of behaviors? Could anyone suggest why this may be and what I should do next? Thanks, Denise
Kristina Chew, PhD
Jun 5, 2008 at 3:35 pm
@Denise,
I am confused with you. My son, as I noted in the post, was much older—7—and aggressive and self-injurious when it was prescribed. He started taking Zoloft prior to the Risperdal for anxiety. I tried to wait as long as I could before starting him on medications.
Are your daughters in a preschool and/or home program, if I may ask? Is there an ABA consultant to try to figure out what might be motivating the behaviors? We’ve definitely been through all those things with my son at various points in his life. Very best —-
Jenni
Jun 5, 2008 at 5:11 pm
Hey Denise,
I think I might be able to shed some light:
It was time to take Mike, my 10 year old son, to the psychiatrist for a med update. Last time we were there, 5 years ago, he put Mike on Risperdal. After I got home and read everything, I flushed the pills down the toilet. Those side effects are terrible! So we go in there last week and he asks me, is he still on Risperdal? I said no, we never tried it. I didn’t think his symptoms warranted such a medication. He told me that it was prescribed because sometimes, not often but sometimes, Risperdal will appear to “cure” the symptoms. No one knows why. Is it for real? I have no idea. But that might be why she prescribed it first to your girls. What should you do? I don’t know, that’s up to you. But I can tell you this, having a 10 year old, I have learned to trust my insincts. If you believe in prayer, this would be my advice. One thing you can know, with the antipsychotics, the side effect that scared me was tardive dyskenisia (sp). He has a hard enough time fitting in without a muscle tick that may or may not go away. But I have read that it comes after long term use and it’s very rare. So if you tried it, it is unlikely that you would see it in just a few weeks. Good luck and God bless you and your girls!
Hugs, Jenni
Natasha
Jun 6, 2008 at 9:47 pm
Hi I’m a mother of a 10yr old child who is autistic. My son’s name is Nicholas and for the last 3yrs with a slight brake inbetween he has been on Risperidal. For my son it has helped him at school and has reduced outbursts and aggression against other children. When he was off it (took him off to see if he would be OK without) aggressive behaviours came back with a vengence. However,Risperidal does not help his focus or help him to sit still and be calm. I am hoping Adderall might help in addition to the Risperidal, as Ritlin and Strattera have not they just made him more agitated/nervous energy. If anyone knows anything about the combo Risperidal and Adderall let me know.
Thankful and Hopeful.
Natasha
Kristina Chew, PhD
Jun 6, 2008 at 10:36 pm
@Natasha,
My son is not on Adderall too and (not that this is very helpful) I have known some other parents with children taking both Risperdal and Adderall, for the same reasons as your son. One mother noted that—while Risperdal had caused a lot of weight gain in her son—-Adderrall had the opposite effect.
tsquared
Jun 6, 2008 at 11:26 pm
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.
Kristina Chew, PhD
Jun 6, 2008 at 11:46 pm
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……
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