• Fri, Jan 4 2008

The Medication Question: Use of Antipsychotic Drugs for Individuals with Intellectual Disabilities

A study published today, January 4th, in The Lancet, has found that two antipsychotic drugs —Risperdal by Janssen and the older drug, Haldol—that are widely prescribed to many persons with intellectual disabilities to control aggressive outbursts are “no more effective” than placebos. Antipsychotics were originally developed to treat schizophrenia and, as the New York Times notes, are now used as “all-purpose tranquilizers to settle threatening behavior — in children with attention-deficit problems, college students with depression, older people with Alzheimer’s disease and intellectually handicapped people.” In the study, 86 persons with low I.Q. who live in community housing in England, Wales, and Australia were tracked for month. For those who took a placebo, there was a 79 percent reduction in aggressive behavior and a reduction of 65 percent or less in those taking antipsychotics. The findings are a challenge to “standard medical practice in mental health care clinics and in nursing homes” in the US and internationally. The researchers noted that the “findings almost certainly applied to all similar medications,” such as Seroquel.

More details about the study from the New York Times:

Previous studies of the drugs’ effect on aggressive outbursts have been mixed, with some showing little benefit and others a strong calming influence. But the drugs have serious side effects, including rapid weight gain and tremors, and doctors have had little rigorous evidence to guide practice……..

While it is unclear how much the study by itself will alter prescribing habits, “the message to doctors should be, think twice about prescribing, go with lower doses and monitor side effects very carefully,” Dr. [Johnny L. Matson, a professor of psychology at Louisiana State University in Baton Rouge, and co-author of an editorial with the study] continued, adding:

“Or just don’t do it. We know that behavioral treatments can work very well with many patients.”

Other experts disagreed, saying the new study was not in line with previous research or their own experience. Janssen, a Johnson & Johnson subsidiary, said that Risperdal only promotes approved uses, which in this country include the treatment of irritability associated with autism in children.

In the study, Dr. Peter J. Tyrer, a professor of psychiatry at Imperial College London, led a research team who assigned 86 people from ages 18 to 65 to one of three groups: one that received Risperdal; one that received another antipsychotic, the generic form of Haldol; and one that was given a placebo pill. Caregivers tracked the participants’ behavior. Many people with very low I.Q.’s are quick to anger and lash out at others, bang their heads or fists into the wall in frustration, or singe the air with obscenities when annoyed.

After a month, people in all three groups had settled down, losing their temper less often and causing less damage when they did. Yet unexpectedly, those in the placebo group improved the most, significantly more so than those on medication.

This study is of interest to me: Charlie has been taking Risperdal since 2004, when his head-banging was occurring so frequently—20 times, 30 times, more times—-that, if I may understatement the matter, we were seriously, seriously concerned in a stomach-wrenching way. When the neurologist prescribed the Risperdal, he admonished Jim and me that the medicine was only going to help Charlie manage himself a bit better, and that his education would be most important in controlling the head-banging. It’s the combination of medication plus a highly structured school program and a highly structured home program that have helped Charlie learn not to head-bang; we try to keep the dosage he takes as low as possible, and to change our teaching and strategize about what else we can do when the behavior recurs.

On the other hand, an elderly relative who was suffering from clinical depression, was given Seroquel (and other treatments). I don’t know the particulars of her treatment plan but, due to her age and the condition of her health, there was no teaching her new ways of thinking and other things she might do and try to address her depression. The medicine was not at all enough. (She does not live in a nursing home.)

This sentence from the New York Times article stood out to me because of the way it describes an “aggressive outburst”:

Many people with very low I.Q.’s are quick to anger and lash out at others, bang their heads or fists into the wall in frustration, or singe the air with obscenities when annoyed.

It can seem that my son—who, at a first or second meeting, does appear to be of less than average I.Q., due especially to his struggles with language—is “quick to anger and lash out at others.” But his teachers and therapists know that while he may get angry “out of the blue,” there are reasons why this happened and they have to figure this out. (And if I could not talk and were being constantly misunderstood—-as has occurred to me when I spent a summer in Taipei, Taiwan, with a very uncertain grasp of Mandarin—-I remember feeling very and frequently frustrated and annoyed.) For the New York Times to say that one of the persons in the study “singe[d] the air with obscenities” seems a rather loaded way to describe a highly understandable reaction. More understanding of why adults with intellectual disabilities have “aggressive outbursts” —and more time spent teaching them how to learn other ways to express themselves—is needed.

Charlie still has “outbursts” of a very forceful nature. We usually connect these to extreme anxiety and worry, and to the fact that, right now, Charlie cannot tell us in language that he misses my parents and California, that his stomach or head hurts, that he feels bad that another child in his class is crying, that he didn’t want to get out of the car and come home—-I opine these meanings from spending so much time with Charlie and wracking my own mind as to why this happened, why he did this, and emailing and talking to teachers and therapists about what we can do. Just last night I was reading an account I wrote of the period in Charlie’s life when he had so much self-injurious behavior and I’m amazed to be able to say, he does not do that anymore.

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  • http://www.homeschoolnetc.blogspot.com Mrs. C

    Well, it seems most conservative Christians I know are very, very, very against any antipsychotic drug, ever. It’s just a given that they’re overprescribed and morally wrong to take. I see stuff on other blogs, too, about this or that happening in the news and LOOK! He was on an antipsychotic and that caused it! These drugs are bad! And these are people I would agree with on most other “issues.”

    But unfortunately sometimes parents are stuck in a horrible position of having to consider such medications for just the sorts of behaviours you mentioned. When your child DOES NOT FUNCTION and you’ve tried everything else you can think of, what else are you going to do?

    I don’t like going to these specialists because I feel that they’re very condescending to people in my “culture,” if you will. They do NOT want to understand why parents think or do this or that and would NOT be understanding if I were to pull my older son from public school (I already homeschool my 7-year-old on the spectrum). They don’t understand where I would have a problem with the curriculum and the secular mindset there. (She’s crazy! What a bad parent!)

    At the same time, I feel that people at church or who are very religious do NOT GET that this problem we have is not ONLY the result of poor upbringing (um, anyone perfect in their parenting always??), or that considering medication is not *just* for parental convenience to make a child a “zombie.” Why didn’t I nip all this behaviour in the bud and homeschool him since kindergarten? (She’s crazy! What a bad parent!)

    Perhaps off-topic, but I feel very caught in the middle on everything. You really do wind up just trying to do what’s best for your child, as cliche as it sounds. Then when things aren’t all better you feel badly and there is no support from anyone LOL!!

    But seriously. You find me a placebo that works and I’ll be happy to incorporate it in my routine here at home!

  • http://hardwonwisdom.blogspot.com Rose

    Wow, this is interesting. We just take for granted we are doing the better thing because there is “proof”.

    You’ve brought this up before, that Charlies headbanging suspiciously ended when a school more suited to him came along.”All behavior says something”…maybe we should consider that more carefully when dealing with our kids. Psychiatry often has an “out damn spot” mentality, when sometimes all that is needed is to be heard.

  • http://maternal-instincts.blogspot.com Niksmom

    Rose said it well, I think. This is exactly why we pulled Nik from school and left the supposedly brilliant neurologist we had been seeing; he wanted to medicate *before* attempting educational or behavioral intervention/support. Where Nik was considered “aggressive” by this neurologist, we see him as frustrated and have worked hard to ameliorate the frustrations where we can. The result is a calmer, more communicative (though still non-verbal) Nik.

  • alyric

    FRm Johnny Matson:

    “Or just don’t do it. We know that behavioral treatments can work very well with many patients”

    I haven’t had a real good look at the references I ‘ve collected from Pubmed yet but the preliminary look suggests that behavioral treatments of the ABA type don’t work all that well for self injury; aggression yes, self injury, no. Possibly because aggression really is provoked by externals of the type behaviorists are trained to look for – escape, avoidance attention and self-injury isn’t. Very resistant to treatment apparently, which seems to be why the behaviorists have taken to calling the contingencies ‘automatic reinforcement’.

  • Mekei

    Mrs. C -

    Judgemental Christians don’t make very good Christians. I’d be running for the door.

    You need to find a new church. You can’t lump “conservative Christians” into a single category. Sounds as though the church you speak of is extreme in their beliefs on meds and medical practice.

    I can empathisize w/you somewhat…Which is why I don’t commune much in small groups within our church (especially with other mothers).

    Christian, Hebrew, Purple or Blue, people who don’t get it, just don’t get it and perhaps they never will. Unless they can spend a day in your life, they’ll only be speculating. Forgive them, for they know not what they don’t know.

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

    @Mrs. C
    “(um, anyone perfect in their parenting always??)”

    Funny how we tend to forget that—-last night at the pool, I saw a little girl ask her mother, with 5 fingers displayed and politely, for 5 more minutes in the pool. My first thought: Spontaneous request! …… What I saw: The girl got out of the pool; her mother was already walking to the door.

    Must be a magic placebo out there somewhere.

    @Rose and Niksmom

    As I’ve written, we drive almost 2 hours to see this certain pediatric neurologist because he listen to us—-fancy that. And he encourages calling and emailing. Another psychiatrist and two other neurologists all immediately wanted to up Charlie’s medication, after seeing him for 15 minutes. (Those were one time appointments.)

    I would say that teaching is at least 90% of the reason Charlie manages the SIBs better——and it is has taken an “arsenal” of activity schedules, Behavior Intervention Plans, hours of teaching and hours of training, and a lot more, to get Charlie to where he is in monitoring himself for anxiety—-sometimes, when he is very upset, he shakes his head as if he’s thinking about head-banging. And that still happens (on rare occasions) and he talks about “you head-bang, you head-bang” (pronomial reversal there—-he is repeating what someone said to him…….). Hence, we don’t yet at all feel we take him of the Risperdal.

    @Niksmom—I do read Charlie’s aggression as not simply “aggression”—-but a real effort to communicate, frustration, anxiety, disgust that we are still not getting it or that he still can’t do what we are asking him to. When he was in his former school, sometimes I think he head-banged or had an accident just to get out of the classroom for a little while (tellingly, when our current consultant — she has been with us since July 2005 — came to observe, he had two accidents. In 3 hours.)

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

    @alyric,

    we found that escape and avoidance and attention were why Charlie had the SIBs—-and also, yes, “automatic reinforcement”—a sensory reason. I suspect Charlie sometimes got over-stimulated by his thoughts or noises or smells or something not being right.

    Our ABA program is a little “loose” about some things. Charlie hums while he works and his sessions are full of “sensory moments”—-sometimes he works wrapped in his blanket. (He likes to wrap himself up like—excuse the expression—an enchilada and lie on the floor.)

  • http://www.marlabaltes.blogspot.com Marla

    We had M on Risperdal for about three years and for a time we thought that it helped. Looking back I don’t think that it did. I think waiting and helping her gain communication abilities was key. However, I will say that we have tried many other medications. And a few have helped. We know because we have weaned her off of them and waited and then put her back on the medication or in some cases chose to stop the medication. She can not go without Seroquel. That medication has been a huge help to her aggressiveness and inability to control her moods. When she is off of the medication she becomes almost violent, self destructive, depressed and will “talk” of violent things which is totally out of her character. We have tried to wean her off of this medication four times and every time it is as if she regresses back to her toddler years. M has even requested to be put back on the medication telling us her “brain does not work without it”.

    I also find the statement about the obscenities strange. It seems like something an ignorant person would say. I too agree that every behavior is a cry to express something. There is meaning behind it.

    However, when a child cannot control their aggresive outbursts and becomes a danger to themselves and others as our child did I think trying medications is totally understandable, certainly not evil. I think that not trying a medication when it could possibly save your child’s life is devastating. I include Risperdal, Seroquel, Trileptal and the many other medications in that group of possible life saving drugs.

    I also believe that you can not expect a medication to be a “magic pill”. Any parent who has a child on them would agree that it does not sedate your child for easy parenting. That is ridiculous. Education, structure, love and patience all need to be going on in the home and school for a medication to have a full effect.

  • Karen

    Kristina,
    You mentioned Charlie having accidents…my son does this too and I have always thought it was an “act of aggression” or more to the point, he was doing it for a “reason” so to speak. Thank you for validating my thoughts! Pete has never been on medication, but his aggressive outbursts have greatly diminished now that he’s in the right classroom; in fact, the right classroom has helped to improve his behavior at home as well. He is developing the skills to self-regulate now and it’s amazing to see.

    Karen

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

    That time when he had the 2 accidents when the consultant came confirmed a lot of things—-the first time she observed him was in a different classroom, during Extended School Year, in July 2005. That was the second time that Charlie had ever met her (the first time she came to our house). I think that he could tell that she was different from the teachers—he had had a home ABA program starting when he was 2 and the first team of therapists are those he talks the most about; she reminded Charlie of one of these first therapists. When the consultant observed Charlie in ESY (July), it was literally only as he was about to put on his backpack that he was on the floor, head-banging, and the teacher, aides, school nurse were frantic—I still remember the nurse, who was simply out of her league, trying to put a pillow under Charlie’s forehead. I was waiting at the end of a hallway and saw the whole thing.

    The right classroom really makes all the difference—home life is indeed pleasant.

  • Mitch Conners

    I can support Marla here.

    Personally, I’ve found Risperdal to be helpful for my child. The medication helped her control her emotions enough to be able to attend school. Before that, I don’t think it would have been possible. She was on the verge of a breakdown.

    Once she was in school and improving dramatically we did consider taking her off the medication. We lowered her doses very slowly but her reaction was extremely negative. She regressed a in many ways and she became extremely violent. Once the medication was increased to normal levels her behavior leveled out again. There were no other factors in her life that would have account for this difference at the time.

    The side effects appear to be minimal. There is some weight gain, but it is not significant. I’m not wild about having her on any medication, but it appears to work and not change her as a person.

    On the study itself, let’s keep in mind that this is one study and science is never based on just one study. The body of evidence points to these drugs being effective. This study will need to be replicated. If it is indeed found to be repeatable, we need to figure out what has caused the conflict in results.

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

    Thanks, Mitch. It is very helpful to hear about yours and Marla’s attempts to take your children off the medication—-we have not tried this for Charlie with the Risperdal. An increase in SIBs would be, to put it too mildly, not good.

    The study was also about adults (aged 18-65) of various diagnoses; a separate study would, it seems to me, need to be done specifically for children to better apply these findings.

  • Mitch Conners

    Oops, I misread your post Marla.

    To clarify: I have had some success with Risperdal, but not other drugs. I don’t think there is any magic drug bullet for Autism.

    At the same time I think every Autistic child is a little different. What therapy (drug or otherwise) works for one child may not work for another.

    As far as the morality piece goes…my charge is to make my child’s life better. If drugs do that, then that’s the morally correct choice. I wont let her suffer so I can feel morally superior to people who do use medications.

  • http://www.revolutionhealth.com/blogs/resilientmom resilientmom

    Doctors advised us that when the obsessions or agressive behavior interfere with everyday life, it is fair to consider medication.
    We pondered and waited for quite some time, and then delved into the world of zoloft, luvox, paxil, anafranil, risperdal, seroquil, all at different times, to no gain, except the weight gain.
    A few years later, we met a famliy who spoke about Abilify, an how it “took the edge” off. We tried it for our son, and continue to do so.
    It seems to work.
    I do take exception in the NYTimes article and Dr. Tryer’s study, when he views the individuals as “these people” who needed attention. Given that my son is one of “these people”, I found it disrespectful.

  • MJ

    I think you are mischaracterizing clinical depression with statements like :

    “there was no teaching her new ways of thinking and other things she might do and try to address her depression. The medicine was not at all enough.”

    From what I understand (and I have immediate family members who suffer from depression) it isn’t the sort of condition that “new ways of thinking” really help. Real depression is a result of chemical imbalances in the brain that can be mitigated by the proper balance of medications.

    An analogy to your statement is telling someone who is missing a leg that crunches don’t really help, what they need is a new way of walking.

    I would say that there are strategies that can help a person with depression recognize the signs that they are currently depressed and attempt to alter their actions accordingly but that is a far cry from the implication that teaching works better than meds.

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

    MJ, “Real depression is a result of chemical imbalances in the brain that can be mitigated by the proper balance of medications.”

    thank you so much for pointing that out. I was writing very allusively there on purpose and “teaching” is not exactly the right phrase. The person in question is my mother-in-law, whom we lived with last year and who has had depression and other psychiatric illness for many years. She is aware of her depression but due to her age and other health factors, there are limits as to what she is able to do.

    Thank you very much.

  • Regan

    All 3 groups improved?
    Did they control for the behavior of the caregivers?

    I saw the above an wondered about expectancy effects or placebo by proxy, or even some real change in behavior which resulted in positive outcome in the study participants.

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

    This statement from Dr. Tabor in the NY Times article is of interest, I think:

    In an interview, Dr. Tyrer said there was no reason to believe that any other antipsychotic drug used for aggression, like Zyprexa from Eli Lilly or Seroquel from AstraZeneca, would be more effective. Being in the study, with all the extra attention it brought, was itself what apparently made the difference, he said.

    “These people tend to get so little company normally,” Dr. Tyrer said. “They’re neglected, they tend to be pushed into the background, and this extra attention has a much bigger effect on them that it would on a person of more normal intelligence level.”

    Were the results for the medication vs. the placebo the same after the study was over and those in involved in the study were no longer receiving the same level of attention?

  • Regan

    Thank you Kristina.

    “Being in the study, with all the extra attention it brought, was itself what apparently made the difference, he said.”

    That’s very interesting. It may also be, as you have noted, the case that the most interesting observations to report are happening after the official end of the study. I’ll have to look more closely at this.

  • http://autismcrisis.blogspot.com/ Michelle Dawson

    The existing body of evidence does not support the use of risperidone in autism, when recognized standards of science and ethics are resorted to. See the recent systematic review from the Cochrane Collaboration (Jesner et al., 2007).

    In Tryer et al. (2008), the effectiveness of the placebo was rapid, dramatic, and sustained. Quote from the paper:

    “Our study… shows that either the placebo effect, the psychological effect of a formal external intervention, or spontaneous resolution, or all three, are substantial and would be difficult to surpass by even the most effective of drugs.”

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

    Jesner OS, Aref-Adib M, Coren E on Risperidone for autism spectrum disorder in the Cochrane Library; there is also a summary on the Cochrane Review.

  • KimJ

    This reminds me of an old parable about college students researching the effectiveness of raspberry tea with elderly people in nursing homes. The story goes that these students visited these people at their homes, often at their bedsides and presented them with their tea every afternoon for a particular amount of time. After 6 weeks, they noticed all sorts of benefits from the “tea”, including; lifted moods, less urinary tract infections, less accidents of falling out of bed and a higher rate lucidity. The students concluded that “raspberry tea” had important and curative properties.

    I’m not saying this study in England was done that naively. But it’s an interesting similarity.

  • http://daisymayfattypants.blogspot.com Emily

    Deciding about meds is just another situation–like ABA, mainstream vs. self-contained, dietary changes, therapies–where the parent(s) most often know(s) best and know their child best and are the most qualified–with appropriate information–to decide whether or not something is effective. We see things 24-7 that someone who sees our child for a half hour simply won’t be able to discern.

    This was not a pediatric study, and as anyone can tell you, the response of pediatric patients to ANY drug therapy can be wildly different from that of adults. Also, there were only 86 people in three groups (~29/group) with a huge age disparity–this study ain’t the be-all and end-all on this subject.

    For the record, I’m not intellectually disabled that I know of, yet I do occasionally bang my head on things and singe the air with obscenities (after making sure no one under the age of 21 is around).

  • http://daisymayfattypants.blogspot.com Emily

    Also, a month does not seem like a very long period of time for follow-up.

  • http://autismcrisis.blogspot.com/ Michelle Dawson

    Tryer et al. (2008) provide data for follow-up periods up to 26 weeks.

    The authors also state that intellectually disabled people deserve to benefit from and be protected by recognized standards of science (e.g., good experimental design). I agree, and I’ve (often) stated the same re autistic people.

    In Jesner et al. (2007), the systematic review of risperidone in autism, most (two of three) of the included RCTs involved children.

  • http://rationallongevity.blogspot.com AnneC

    The thing is, deciding about neuroleptics in particular is not like generically “deciding whether or not to medicate”.

    Neuroleptics (Risperdal, etc.) aren’t just “medications”, they’re very serious business, and they’re very harsh on the body.

    Deciding to give someone an antipsychotic (“atypical” or otherwise) is not like deciding to give them aspirin or speech therapy — there’s a ton more risk involved, and while I’m not accusing anyone on this thread of being unaware of the risks, I do think the risks are often minimized when drugs like Risperdal get lumped in generically with “medication”.

    Not all medications are alike, and the ethical/philosophical issue surrounding *this particular class of antipsychotics* is a different thing than the issue of “to medicate or not to medicate” in the general sense. I really wish people would get that.

    Basically, even though I realize things like head-banging can be dangerous, I don’t like the idea that because someone seems to have “dangerous and scary behaviors” that it’s okay to stop looking for alternatives if a neuroleptic “seems to work” for them. (And again, this is *not an accusation*. Insert disclaimers as needed if anything I’m writing here sounds like a personal accusation, because it’s not — I’m just trying to bring up things for people to think about!)

    I’m aware many are doing a lot to look for alternatives, but as far as drugs go, I just think many people are really a lot more cavalier about antipsychotics than they ought to be. Especially doctors, actually — the doctor who prescribed me Risperdal as a teenager (to which I had an utterly horrible reaction — it was like a waking nightmare) said nothing to me or my parents about potential dangerous side effects, and it was only later through my own research that I learned how common the types of reaction I had were, and how in some people, these reactions were just ignored and thought to be “signs of the person’s underlying problem”.

    What concerns me is that the medical establishment is gearing up to go, “Oh, well, we should probably just try ALL autistic kids on these drugs” and not even *look* for anything potentially less dangerous (e.g., something that isn’t likely to lead to elevated triglycerides, diabetes, tardive dyskinesia, neuroleptic malignant syndrome, etc.)

    (And, for the record, I am not “anti-medication”; I actually take Adderall myself. It helps me and doesn’t seem to produce negative side effects, so I consider it worthwhile. So please don’t take this as an “attack on the idea of medication”, it’s not that at all.)

  • http://daisymayfattypants.blogspot.com Emily

    Michelle, what was the f/u range and median/mean? I’m not going to get that Lancet piece right now.

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

    @Anne C, I’m hopeful that this kind of exchange—in which the risks and side effects are honestly brought up — can point to better alternatives. It would be a long-term goal that (in Charlie’s case) the right school environment might help him be able to go, someday, with the Risperdal. He is approaching adolescence and the hormonal changes that then entails, and a lot else…I suspect this will be a continuing dialogue with the neurologist and many others, and more stumbling towards a partial answer…. but fortified with better knowledge. One hopes!

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

    Here is the abstract for the study from The Lancet. And more commentary on Furious Seasons.

  • http://autismcrisis.blogspot.com/ Michelle Dawson

    For Emily, in Tryer et al. (2008), scores on various measures are provided for baseline, 4, 12 and 26 weeks. For one measure, data are also provided for each of the first 12 weeks.

  • Amanda

    Basically, even though I realize things like head-banging can be dangerous, I don’t like the idea that because someone seems to have “dangerous and scary behaviors” that it’s okay to stop looking for alternatives if a neuroleptic “seems to work” for them. (And again, this is *not an accusation*. Insert disclaimers as needed if anything I’m writing here sounds like a personal accusation, because it’s not — I’m just trying to bring up things for people to think about!)

    Another thing that worries me is the fact that people talk about “trying everything” before trying neuroleptics.

    Which makes me go, “Okay, what if the neuroleptics don’t work, what would you do then?”

    I used to headbang so frequently (far more than 20 or 30 times) that people “tried everything” as well. They even “tried neuroleptics”.

    I wish I knew where the exact quote was, but one of the things they wrote said something like “We were unable to manage Amanda’s symptoms without severely impairing her quality of life.”

    This translates to “Our drugs did not make her function better. And not only did they not make her function better, but in order to even just make her quit headbanging and getting angry and so forth, we had to drug her to the point where she essentially stopped moving.”

    The psychiatrist who wrote that was clueless in some ways but not actually sadistic or negligent (even if some of the staff there were).

    I was soon transferred to a facility where negligence was the order of the day, and was put on doses of neuroleptics far above the toxic dose of one and then added another on top of it. I was also not allowed to lie down or go off on my own during the day. This led to many attempts at physically propping me up so I wouldn’t flop over when I either fell asleep or passed out or whatever that stuff does to you (which happened often throughout the day), and several attempts to keep me awake (because falling asleep or passing out or whatever I was doing was “bad behavior” and we didn’t want other residents believing I was getting special privileges by being “allowed” to sleep). There were also seizures (up to every few seconds or minutes at the worst, both myoclonic seizures and atonic seizures) and life-threatening levels of constipation (while already simultaneously on stool softeners, milk of magnesia, prune juice, fiber capsules, suppositories, enemas and some vile-tasting liquid laxative badly hidden in Pepsi).

    All of which, by that place, were considered acceptable actions as long as I remained in their control. (They had a specialty in people who’d otherwise be in more traditional kinds of long-term institutions, and their particular strategy was to drug people so much they didn’t need locks on the doors. And the climate was so hot that one of the times I tried to run away they found me half-conscious on the ground from the heat about to be dragged off by ambulance. I really hate the fact that places like that are considered better than other institutions just because they’re smaller. I would have rather been in a locked ward on fewer drugs and with fewer people messing with my mind, and I hate locked wards.)

    At any rate, I knew people were trying really hard to find ways to help me in whatever way they knew to help me. And so whenever they did anything to me, including give me a new medication, I would try really, really hard to act more functional. Of course, I couldn’t sustain it even when I could pull it off at all, and this was both because those meds make me far, far less functional, and because my trouble functioning wasn’t due to anything meds would deal with.

    What really gets to me though, is that all these things are supposedly last resort. That awful place I was at (one of several, but the one I stayed the longest at), was a place that specialized in being a “last resort”. (JRC aren’t the only places that claim that, they just act like they are so they’ll get more patients, and they’re bigger and fancier than most. Places like that exist all over the country, in reality, and they prey on desperate parents.)

    I actually confronted a psychologist from there who, among other things, beat me so I would make eye contact, and told me a lot of weird and scary things about what he was going to do to me. Long after the fact, is when I asked him what the hell he thought he was doing, essentially. He told me that everything he ever did was justified because it was a last resort, and because I’d otherwise have been in a larger institution than the one he worked at at the time.

    So, last resort is a very dangerous phrase. It means people can do anything to you. At least, that’s what it meant in my life. And by anything, I mean anything.

    It also bothers me immensely that things like headbanging and such are so medicalized.

    I was “aggressive” and “self-injurious” for very specific reasons. And while some of them correlate to things like overload, the worst of them did not. I mean how the hell does an autistic teenager communicate that they’re scared out of their mind that they’re not only not meeting the criteria normally required for participation in “normal” society, but due to overload meeting fewer and fewer every day? I was scared to death and I was never able to convey why, nor explain my actions. (I could talk some of the time, but it wasn’t always communicative, and it certainly wasn’t equipped for what I was dealing with at the time, including the loss of a lot of speech and communication stuff I’d had before due to ever-increasing demands on my system.)

    And in addition to that, although I’ve talked about it before, I was terrified even more because:

    1. There was this circular sort of cycle where the more that was required of me the less I could manage because of overload, and the more overloaded I got, the more time went on, so there was then even more required before I could even recover.

    2. There were two types of doctors. One said I had no hope and ought to be locked up forever. Another said there was hope because I’d one day function normally.

    3. I knew that in light of 1, then the second half of 2 was not likely, so I was likely to be dealing with the first half of 2, and who on earth wants to deal with that?

    (And nobody ever knew that my habit of repetitively singing the Pink Floyd lines, “while you were hanging yourself on someone else’s words, dying to believe in what you heard, I was staring straight into the shining sun” meant anything about #3, either. I have no clue what it meant to the writers, but that’s always what it meant to me. I was aware of something nobody else was about the situation, and everyone else was throwing all their hope and most of their money into something I knew was never going to be accurate, which was a situation I felt terribly guilty about but had no clue how to fix.)

    At any rate, that’s the situation where I was on neuroleptics, and where a lot of “last resorts” were being tried. (They had a strange way of multiplying or intensifying as soon as one of them didn’t work, and they kept getting more extreme.)

    I’ve finally got my head-banging significantly toned down. If I’d continuously been put into ever more horrible, painful, and even abusive situations and told I had no hope of getting out of them unless I turned into something I wasn’t (and this was really something I picked up from everywhere around me, even more than it was something people had said directly, although they did say it — but you don’t have to be a social genius to figure out that people who don’t meet a certain standard disappear into psych wards, nursing homes, etc), I’d still be doing it, probably more and more frequently and extremely, and I’d still be a “severe and complex case that won’t be resolved quickly or easily” (this is exactly what they called me, I still don’t know what on earth it means).

    Another thing people ought to understand about that situation, is that while a lot of people would then say the root problem was emotional causes… well then the usual way to deal with “emotional problems” is to go to counseling. Wrong answer in this case (and, I believe, in many cases). What I needed wasn’t someone to talk to me about my emotional responses to injustices. What I needed was someone to first of all point out that it was in fact injustice, and then to show me many, many concrete examples of how a person could both remain more or less as I was and have a more or less decent life.

    The closest I got to that was a psychiatrist who kept trying to explain over and over that I was in a crazy-making situation that would make anyone flip out. The problem was I didn’t really have a clue what he was talking about (not just didn’t understand the metaphors or something, also didn’t understand at least half the words). And I needed more than talk. I needed someone to show me that there was more than one thing called “hope”. I had an instinctive understanding that the “hope” and the “lack of hope” I was encountering were actually the same thing. Both sides of a single coin. I needed a different coin and nobody would give or even show one to me so I made my own and they were not good ones.

    It bothers me that all that mental activity was reduced to just a frontal/temporal lobe problem, or a medical problem in general. And that “aggression” and “self-injury” were seen as symptoms rather than understandable responses. And that people think that when something is a last resort then it’s more justifiable.

    Like Anne there is not intent of judging here so disclaimer added. It’s late at night so I can’t imagine you all anyway.

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  • http://lizditz.typepad.com/i_speak_of_dreams/2008/01/inspirational-w.html Liz D.

    Dear Christina:

    my son—who, at a first or second meeting, does appear to be of less than average I.Q., due especially to his struggles with language

    I didn’t think so. But Charlie shares with Leelo something that is very hard for me to put into words: a sort of flickering quality to their presence. I can’t put it any more clearly than that. Sometimes they are present, sometimes they are not.

    Dear Mrs. C:
    I am sorry that your church community is so misunderstanding of your family’s reality. I imagine that you feel terribly lonely sometimes.

    MJ:

    From what I understand (and I have immediate family members who suffer from depression) it isn’t the sort of condition that “new ways of thinking” really help. Real depression is a result of chemical imbalances in the brain that can be mitigated by the proper balance of medications.

    1. Cognitive behavioral therapy (“new ways of thinking” can be helpful in treating depression, either alone or in combination with medication (and exercise, and an improved diet.
    2. The “chemical imbalance” theory of depression is not clinically proven.

    Amanda: thank you, as always, for your eloquence.

  • http://daisymayfattypants.blogspot.com Emily

    Kristina and Michelle–thanks for the info.

    Amanda…wow. Thanks for sharing all of that. Intense.

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

    Thanks Amanda—much to keep thinking about.

    Liz— have been thinking of, and watching for, “flickering” Charlie all day—-

  • Regan

    The article in the Lancet is in reference to adults from a specific population, but I thought that the below might be another useful reference in considering the evidence base in use of psychotropic medication for minors across different diagnoses,

    “Report of the Working Group on
    Psychotropic Medications for Children and Adolescents:
    Psychopharmacological, Psychosocial, and
    Combined Interventions for Childhood
    Disorders: Evidence Base, Contextual
    Factors, and Future Directions”
    American Psychological Association
    Report adopted by the APA Council of Representatives, August 2006 meeting
    http://www.apa.org/pi/cyf/childmeds.pdf

  • http://autismus.twoday.net monika

    My son is seven years old and has been taking risperdal since May 2007 – so it is fairly new for us. I was very hesitant about it, but his aggression and head-banging/ biting etc. was so severe that I could not handle him by myself anymore. Once we started risperdal, he improved considerably. He even started talking a little bit, which he didn’t do before. Recently I thought that he was doing so well that we could maybe get off of medication. Together with the pediatric neurologist, we reduced the dosage. The aggressive behavior immediately re-appeared. I was devastated, because I still don’t like the thought of him taking antipsychotic drugs, but I have realized that I might have to live with it. Since we put him back on his previous dosage, he is much better. Moreover, he himself wants to take the pill, which is quite astounding considering how severe his autism is. Before risperidal, he refused to swallow any pills, it was always an ordeal. With risperidal, he started swalling it very voluntarily after only a few days and once even brought me the package when it was getting close to his usual pill-time. Of course that could also just be a sign of dependency, I realize that. But the way he behaves with or without it, seems to suggest to me that it is really benefitial for him. He is much calmer, much more alert, and he wants to take it. He is getting very good educational and behavioral treatment, but it didn’t work much without the med. Only since the introduction of risperidal have the educational approaches really started to lead to results. Every case is so individual, I can just say that it does work for us – and I am trying to make my peace with it.

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

    @Monika, we have not tried to take our son off the Risperdal since starting it. One of our main concerns was the effect of his aggressive behavior on his learning at school and the teachers’ sense of what the best placement might be for him. When he started to take it, his learning had completely stopped because the only thing anyone ever talked was behavior, behavior. It was as if we could never get past talking about behavior: As soon as efforts were made to teach Charlie, “something” happened, in an endless cycle. When I first talked to a private ABA consultant in July of 2005, all I noted was the behavior concerns—and then she said, “well, how about some other things, like reading?” And I realized that I had simply stopped thinking about academics.

    Really glad to hear your son is doing well—–

  • Regan

    No particular point other than to announce the program:
    The Medicated Child
    FRONTLINE
    January 8, 2008
    at 9 P.M. on PBS
    “…FRONTLINE producer Marcela Gaviria confronts psychiatrists, researchers and government regulators about the risks and benefits of prescription drugs for troubled children…”
    http://www.pbs.org/wgbh/pages/frontline/medicatedchild/

  • Patrick

    I have been on my current schedule of antidepressant medications (citalopram +trazodone) for more than a year. Can’t really say that they help the depression get very much better, but they do help me sleep better at night, which in turn has its own benefit against the depression (and sleep apnea under bipap treatment) and more.

    As many other folks, sometimes I have stopped taking them, whether due to just forgetting to get them refilled, or not having the money to get them. That is when my head/body start to get really strange, I know that uncontrolled withdrawals are dangerous, but I don’t have the foresight to try and downlevel them for a proper weaning, so to speak.

    While the chemical imbalance theory has not been proven, it has a lot more field trial evidence behind it than just the unhappy thought/bad experiences camps, in my opinion.

    I’m glad Amanda shared some more of her experiences here. I always find her writings (and a lot of others’) informative.

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

    It has certainly been extremely important to me to read about your experiences, and Amanda’s, and Anne C’s, and many others’, with these medications. Of course every person responds in individual ways, but your comments help me think about what might or might not be going on for Charlie—-if not the actual same reactions, the issues that get highlighted help me to think about all this.

    The NY Times reviews “The Medicated Child,” to air on PBS’ Frontline tonight. Bipolar disorder is referred to as the “trendy diagnosis” of the moment.

  • Regan

    Not on atypical antipsychotics, but on SSRIs.

    Antidepressants under scrutiny over efficacy
    WSJ 1/17/08
    http://online.wsj.com/article/SB120051950205895415.html

    Turner, E.H., Matthews, A.M., Linardatos, E., Tell, R.A., Rosenthal, R.
    (2008). Selective publication of antidepressant trials and its influence on apparent efficacy. 358(3):252-260
    ABSTRACT
    http://content.nejm.org/cgi/content/short/358/3/252