• Sun, Oct 8 2006

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.

What We're Reading:
Share This Post:
  • http://www.rettdevil.com Kassiane

    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…

  • http://www.autismvox.com Kristina Chew, PhD

    Interesting what you note about the eye twitching—Charlie has been squeezing his eye and squinting some.

  • melanie

    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.

  • http://www.autismvox.com Kristina Chew, PhD

    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?

  • http://partprocessing.blogspot.com/ zilari

    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

    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

    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

    sorry 1 am to 5 am

  • http://www.autismvox.com Kristina Chew, PhD

    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

    Risperdal is great for people with severe OCD (which is pretty common among autistics). You just need to be careful about not overdosing.

  • http://www.autismvox.com Kristina Chew, PhD

    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.

  • http://partprocessing.blogspot.com/ zilari

    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.

  • http://www.rettdevil.com Kassiane

    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.

  • http://partprocessing.blogspot.com/ zilari

    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…

  • http://www.rettdevil.com Kassiane

    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

    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

    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.

  • http://www.autismvox.com Kristina Chew, PhD

    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

    Melatonin never worked for us, I mean never. what is focalin xr?

  • Jenni

    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. :)

  • http://facingthemorning.wordpress.com/ shan

    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.

  • http://www.autismvox.com Kristina Chew, PhD

    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?

  • http://www.aspies.blogspot.com Lisa

    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

  • http://www.rettdevil.com Kassiane

    *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

    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.

  • http://www.autismvox.com Kristina Chew, PhD

    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.

  • http://www.rettdevil.com Kassiane

    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.

  • http://lisa-jedi.blogspot.com/ Lisa/Jedi

    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.

  • http://www.autismvox.com Kristina Chew, PhD

    Thanks, Lisa…… I think I am going to borrow your phrase, “the fullest life we can give him.”

  • Pingback: Autism Vox » Amber waves of grain in the Golden Arch’s fries: Lawsuit filed against McDonalds

  • melanie

    we never tried gluten/casein because without M&m’s our son would go into ketosis, her really only eats chicken!

  • Jenni

    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. :)

  • Pingback: Autism Vox » Autism and Irritability

  • Pingback: Autism Vox » A Remedy and a Poison: The Pharmakon

  • Clay

    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.

  • http://www.autismvox.com Kristina Chew, PhD

    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

    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.

  • http://www.autismvox.com Kristina Chew, PhD

    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.

  • Pingback: Autism Vox » Psychiatric Medications, Stigma, and Rebecca Riley

  • Pingback: Autism Vox » Teaching Strategy #6: 1st Cooking Lesson

  • Uma

    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.

  • http://www.autismvox.com Kristina Chew, PhD

    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

    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.

  • http://www.autismvox.com Kristina Chew, PhD

    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

    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.

  • http://www.autismvox.com Kristina Chew, PhD

    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

    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.

  • http://www.autismvox.com Kristina Chew, PhD

    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.

  • Pingback: The Medication Question Again

  • Amanda

    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.

  • http://www.rettdevil.org Kassiane

    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.

  • http://www.autismvox.com Kristina Chew, PhD

    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

    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

  • http://www.autismvox.com Kristina Chew, PhD

    @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

    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…

  • Pingback: Is Medication Use in Autistic Children Increasing?

  • karen

    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

  • http://www.autismvox.com Kristina Chew, PhD

    @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—-

  • http://graceunderautism.wordpress.com Kara

    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.

  • http://www.autismvox.com Kristina Chew, PhD

    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

    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

  • http://www.autismvox.com Kristina Chew, PhD

    @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

    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

    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

  • http://www.autismvox.com Kristina Chew, PhD

    @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

    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.

  • http://www.autismvox.com Kristina Chew, PhD

    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……

  • Brett

    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

  • http://hammie-hammiesays.blogspot.com/ hammie

    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

  • http://www.autismvox.com Kristina Chew, PhD

    @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!

  • http://roostercalls.blogspot.com g

    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

  • DC

    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.

    • Lisa

      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!!

  • Allegra

    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.

  • Alicia

    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

  • http://hammie-hammiesays.blogspot.com/ hammie

    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

  • chrstine

    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???

  • http://www.autismvox.com Kristina Chew, PhD

    @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.

  • 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 . . .

  • http://www.autismvox.com Kristina Chew, PhD

    ditto to that last paragraph, Tomsmom……..

  • Charmed

    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..

  • Dave

    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.

  • http://www.autismvox.com Kristina Chew, PhD

    @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—

  • Dave

    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

  • Mary

    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.

  • Shauna

    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.

    • kathy limata

      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…

  • paula guerra

    my son was just diagnosed with “high functioning autism” and he is 15!!! I know how frustrating it is not having a diagnosis!! keep looking for the right dr. and research as much as you can!! He also takes risperidone for violent outbursts and there are times when he rolls around laughing to himself and I dont know if its the risperidone or his autism

  • Jim

    Chrstine

    I know your comment was posted a long time ago but I would be interested to see what happended as we wen through the same thing with our 4 year daughter. The ripseradal worked great for a month and then she started beign aggressive again. we increased the dosage four days ago but it doesn’t seem to be having any effect so far…