Philip,

As one who has a similar disorder to AS and who has worked with autistic kids as a teaching assistant, I disagree vehemently that the kid being described does not have AS or autism. If a professional told this mother that, she needs another opinion.

It breaks my heart that this kid will be on meds that does nothing to deal with the autistic symptoms.

I realize that even if the kid received an accurate diagnosis, that is no guarantee that drugs still won't be shoved as a first treatment. But to just blow off the autism/as diagnosis which I suspect a professional did, is simply criminal.

AA

Posted by: AA at April 10, 2008 02:25 PM

In regards to my post below on the topic "PBS Reruns "The Medicated Child"

Dearest V.

I would really like to sit here and spend some serious time commenting on your post. I honestly plan to at a future time. Judgment and observation are two very different things! I'm sorry if you happen to take my comment personally, yet I will stand whole heartedly by the statements made in my post. It's not that I don't have great empathy for your particular situation; but what is happening is a far too common occurrence with the children of today; which I personally feel amounts to both abuse and neglect. I have to drive north and be with a friend of mine that has had a cancer relapse. But when I get back Sunday I will try to explain further my position without trying to offend you or anyone else; which is probably pretty much impossible when you’re dealing with such controversial and personal issues. I hope you noticed, I said the large percentage of kids are being abused and could be helped by more responsible parenting skills and choices. I didn't say this was a complete brush stroke approach to children with mental or behavioral health issues. I was also referring to the kids and parents I viewed and observed in this film. But I still hold onto a general view that kids of being over diagnosed and medicated without proper rational or evidence to support such measures. Sometimes it just maybe the parents are the ones that need a diagnosis, counseling, and medication, instead of the kids? I don't know your particular situation, you, or your child. So I can't make a statement about you or your child of any relevance here in this format. I'm not a therapist or espouse to be one here. I am bipolar and was quite a challenging child myself. I thank God (you can take that figuratively or in actuality, which ever you wish) I wasn't put through what kids are being put through today. I truly hope things work out the best for you and your child on a heartfelt level.

Yours truly
Stan

Posted by: Stan at April 10, 2008 02:49 PM

Sorry it just doesn't sound like having trouble sleeping through the night and being afraid of thunderstorms and spiderwebs are symptomatic of bipolar disorder. Having trouble sleeping through the night might indicate not getting enough exercise during the day. Being afraid of thunderstorms could indicate being a normal child and fear of spiderwebs probably means the child is trapped in an improperly maintained filthy home. The parents are restraining him to the point that he has to bite them to get away and can't figure out how to toilet train him, no wonder he has explosive rages, and then bizarrely the kid is described as having good social skills. As for wearing shoes too tight, there's got to be something interesting here like why he still has access to shoes that are too small and how he got used to wearing ill fitting clothes, indication of abuse.

Like so many purported psych diagnoses this report is contradictory and meaningless. And yet I have no doubt this person really believes she is helping her child. That's the scariest part.

Posted by: Sally at April 10, 2008 03:33 PM

I am reposting my response to v under the PBS post on The Medicated Child here:

I know I am one of the most strident critics of the use of AAPs in children and therefore parents like "v" are very angry with me. I agree the situation she describes with her child is absolutely tragic. And I do believe there is something seriously amiss with her child. I still don't think these meds are the answer although appreciate that they seem to work for a period of time. I am quite convinced though that they make things worse over the long term because of the tolerance and withdrawal effects on the brain. What I'd like to understand is how things got so out of hand. What was the process by which the child's tantrums and dysfunction became worse and was there any correlation with vaccines for instance? Is there any family dynamic at all that might explain some of the problem? At what point in the process of the exacerbation of tantrums etc. was medication started and have the behavioral issues ameliorated in a straight line since then or are there periods when it's even worse than before medication ever started? On what basis are you saying the child is definitely not autistic or Asperger's? Also to what extent have exposure to toxins, heavy metals, allergies to gluten, dairy etc. really been explored? What therapies besides medication have been tried? And has the whole family been in therapy or just the child? I know I come across as unsympathetic. And I hope these parents remember I lost a child to psychiatric medication and have studied not only the corruption in the process by which these medications reach the market but also the actual neuroscientific evidence for toxicity and long term brain damage. I know it's a real conundrum when there is a child with this level of behavioral dysfunction and I'm truly sorry a way to ameliorate it is so very hard to find.

Posted by: Sara at April 10, 2008 03:45 PM

Yes, and the sexual acting-out is an instant red flag for CSA, that is a standard first-line inquiry in the hands of a competent professional. His conversation sounds normal for a kid that age, but the scare quotes around "conversation" indicate disdain, as does the denotation throughout as "the child". The grammatical errors and mispellings throughout are obvious and concerning, because the writer is unaware of them. Right? No pass from this quarter.

Posted by: flawedplan at April 10, 2008 04:14 PM

This child is autistic/ asperger's and treatment is imperative to remain with that in regard. Based on my own daughter, my life and my teaching experience. I understand every word this mother wrote; if this was just a statement I read anywhere else, it sounds like my students.I would caution to keep meds at a minimum, and do not allow psychiatry to take over with treatment.

Posted by: Stephany at April 10, 2008 06:08 PM

People (doctors, parents, children) are doing the best they can with what they know. There are no easy answers. And when we know better, we'll do better. Sympathy and compassion go a lot further than judgment.

Posted by: jadunham at April 10, 2008 06:26 PM

I'm the mom who wrote this.

Any child this complex doesn't get evaluated just once, by one professional, if the parents have access to any resources at all.

And I do, thank heavens. So he's been seen by some of the best folks out there, and one thing everyone agrees on: not on the autistic spectrum.

There aren't any easy answers, or simple solutions, or straightforward diagnoses.

And boy, have I pursued treatments by some of the most qualified practitioners I could find.

And the assumptions underlying some of the nastier comments are examples of what I was saying above: the blanket assumption that parents, in every case, haven't spent years looking for alternatives, or trying everything they have access to.

Notice that I'm not claiming that children are never over medicated, or inappropriately medicated. They are.

I'm saying, that as a parent, there is often a dearth of really good alternatives, and you're placed in the position of deciding if a harmful treatment is worse than the disease.

Parents do this all the time, and their hearts break over it. (Just ask the parents of any child with a seizure disorder who has to give her child medication that slows cognition, and then has to send her off to school.)

But finger-pointing and proposing, I'm sorry, a gluten-free diet (a wonderful treatment for celiac disease, by the way)for mental illness doesn't move the discussion of important issues forward.

As a parent of a child taking dangerous medication, I'm also a regular reader of this blog, and grateful that it exists. The information is invaluable.

By the way, the spell-check on my browser and the comment software don't interact. Make of that what you will.

Posted by: v. at April 10, 2008 06:48 PM

Suggested reading for the mom:

TEACCH is an evidence-based service, training, and research program for individuals of all ages and skill levels with autism spectrum disorders.

Posted by: Stephany at April 10, 2008 07:17 PM

Last year we had a sixth grader come to our school and live with his father, transferring from Florida where he had lived with his mother. All I know is things were out of control in Florida. When we got him, it was a little rocky at first but he got the best special ed teacher in the school and soon was part of a "family" in his class. He was inordinately intelligent, Dad was on the team, everything went SO SMOOTHLY. I am not pointing fingers at the Mom here: Who knows what was or wasn't happening in Florida. But the difference was dramatic. The boy had Aspergers and everybody in the school came to accept his little quirks.

Posted by: Sorrowful at April 10, 2008 07:23 PM

Stories like these blow my mind. I don't understand how something like this can even happen. I think this is one of the few cases I've seen where there is a legitimate behavioral problem rather than an outright attempt to put pharmaceutical shackles on an unruly child. Thank you for posting this Philip. I don't know if medication is the answer, but now I am convinced some children legitimately have psychiatric disorders.

Posted by: NAP at April 10, 2008 08:04 PM

To the mom:

I've lived a decade of "complex". Don't give up, your child will need your voice for many years to come.

Re: sorrowful comment:

These kids often are explosive with the ppl they trust the most; once the trust level is transferred to school teachers, et al., it can begin again.

There are also duel dx which ppl in this forum may not agree with---but mental illness, and autism are often combined; and thus the "complex" dx. Doctors just do not know what to do, and it is the parental gut instinct that must go forward.

I say again to the mom posting here; that I've walked this road, I teach these kids and my daughter is in fact a duel dx.

I hesitate to post my comment here, because it is typically lost amongst the commenters who are anti drug, and not parents or both.

We all have personal stories, and if anything, hopefully we can learn how complex and often fucked up this whole scene can be.

Posted by: Stephany at April 10, 2008 08:22 PM

In addition to the concern over the use of these drugs in children, I'm also concerned with how the diagnosis alone affects the child's development. My mom taught in public schools for many years and had children who were misbehaving actually say, "I can't help it I'm ADD." I really think it's a huge mistake to tell a child they have a mental disorder, because it teaches them that they have no control over their behavior.

Posted by: Lisa at April 10, 2008 10:11 PM

Aspergers, dysfunctional family dynamics, child sexual abuse, autism, poor parenting skills, a filthy home, physical and emotional abuse, allergies, "quirks", toxins, incompetent professionals, incompetent parenting-----aren't you fortunate to have such "experts" at your disposal here, dear v.?! Bad mother, stupid mother! And on top of it, v.,you are a terrible misspeller! Why don't you all tar and feather v. and then report her to health and human services??! Better yet, why don't you spend a few weeks with her and her son. The arrogance, rush to judgement & the dismissal of this mother's extraordinary efforts to help her child have some semblance of a normal childhood are some of the most hateful posts I've read here.

Listen, I read this blog regularly and watched the Medicated Child on PBS for the 2nd time the other evening and I TOTALLY agree that many, many children are being overdiagnosed and unnecessarily and/or incompetently medicated. And I agree with Philip that this is heartbreaking and epidemic. And while heredity, genetics, environmental factors and yes, bad psychiatry and improper medication can be causative/contributing factors, I believe that there are other as yet unknown and unrecognized causes/influences that are contributing to the very early emergence and severity of these symptoms and behaviors.

I can so relate to much of what v. describes about her 5 year old son. When my now 25 year old daughter was a child, she had numerous irrational fears that paralyzed her and had huge issues with sensory integration, she rarely slept thru the night until she was almost 3, she was extremely reactive and had frequent meltdowns, etc, etc, etc. Normal pregnancy, much wanted and loved child. We took her to a child psychologist at age 3, went through family therapy, allergy testing and tried dietary restrictions, attended parenting classes, read and researched everything that was available at the time. She was generally healthy, did well at school and she was NEVER on ANY psychiatric medication until she was a teenager. She now says that she remembers wanting to kill herself as early as age 8. We knew she struggled with low self-esteem but we had no idea until much later how much she suffered inwardly and that she felt like she was a horrible daughter because she couldn't control her emotions and behavior at times. She felt like a failure and so did we as her parents.
To this day, I feel so sad and guilty that we didn't recognize/understand what was really going on and I've apologized to her several times.

After the sudden and unexpected death of beloved father when she was a fragile 14, she descended into a spiral of severe depression and self-destruction that led to her first major suicide attemtpt 6 months later. And yes, I found grief counselors for both of us immediately. After several hospitalizations, more suicide attempts, psychologist testing and evaluation, she was diagnosed with bipolar disorder. It was a total shock at the time, but looking back from her birth to the present and finally, recognizing a strong history of mental illness on both sides of her family tree, that diagnosis now seems obvious.

After years of rapid cycling bipolar disorder, instability, trying different meds, going off all meds and 11 years of CB therapy, she is currently taking Lamictal and a very small dose of Abilfy and she is doing remarkably well. She is now working fulltime as a health care assistant at Planned Parenthood and is paying her own bills and is finally, achieving independence and stability. There is not a day that goes by that she and I both don't wish that she didn't have to take 2 powerful meds with definite risks and side effects. That she is alive today is still a miracle of sorts, given the hell she's been through and how close she came to a completed suicide.

When I was pregnant with my daughter, the 2 year old son of a college friend was diagnosed with acute lymphoblastic leukemia. He was treated with chemotherapy and radiation and is alive today. He is in his late 20's and has recently developed some unusual visual and neurological symptoms that are probably the result of the radiation therapy, which was common at the time. Survivors who were treated with radiation have been found to be at the highest risk for long-term adverse outcomes. His parents and his doctors made the best decision re: treatment, based on the research and outcomes that were known at the time. Ultimately, they were trying to save his life, recognizing that no one could predict the short term or long term outcome/risks. And no one would ever have accused them of being bad or stupid parents.

This blame game is worse than ever. Of course, there are uninformed parents, abusive parents, naive parents, dysfunctional parents, non-questioning parents, etc. But the parents I know who love their child fiercely and who would go to the ends of the earth to help their child get well---whether they have cancer, a congenital heart defect or a brain illness-- are not the demons, idiots and abusers that you make them out to be.

Like v., I'm a regular reader of this blog and appreciate the information and discussions that Philip presents. But I am often outraged and saddened re: the presumptious posts from several of the regulars here. We all have a unique story and biased perspective and I think it's healthy to disagree and question. But the insensitive and sometimes, plain cruel remarks sadly diminish the integrity of this forum.

Posted by: Nancy at April 10, 2008 10:23 PM

Oh Nancy suck it up. I have nothing against this woman and my inquiries are based on lifelong experience with child abuse as victim and advocate. You don't perceive the discrepancies in her narrative doesn't mean they aren't there, point to vast possibilities and bear investigation. There isn't a parent alive that hasn't fucked up their kids to some degree, but we're only supposed to pretend otherwise regarding the ones who's children are in the system? Fail.

Posted by: flawedplan at April 10, 2008 11:25 PM

ok, folks let's all relax a bit. my own sense of things is that V. is bravely dealing with a very rough case with her kid and folks should respect that. i do.

Posted by: Philip Dawdy at April 11, 2008 12:04 AM

I think that it's odd that we're hearing a story of a severely disturbed child and are more concerned about the well being of the mother than of the child. Children are human. When a child is upset, someone or something is upsetting the child. To say the child is just born upset and drug him or her is absurd. FP's note of indications of sexual abuse hit me because I had missed them and then I was thinking, not all child abuse is perpetrated by the parents. How horrible it would be if this child were being abused by someone else, a neighbor, or some other person the child comes into contact with, and in our society neither the parent nor the mental health professional looks for any explanation other than chemical imbalance and the abuse continues and everyone wonders why the child gets no better especially the parents who are not the abusers and because of the bogus medical model never even think to look beyond it. And then there are non abusive causes of childhood distress. We all know that lots of times kids are traumatized by the divorce of parents. This doesn't mean divorce is child abuse. It's often the best situation but it does mean that we shouldn't label a child's understandable distress and a biological disease and try and drug it away. And of course the death of loved ones is traumatic for children. Various changes in our school system that have resulted in an epidemic of kids labeled mentally ill tells me we urgently need to change our school system. The way the children are blamed by the parents in this thread is scary. If someone is upset find out what they're upset about, don't just shrug your shoulders and assume they were born that way, it's ludicrous and goes against all that is decent in the world.

Posted by: Sally at April 11, 2008 02:09 AM

I wonder, sometimes, if people can ever bring themselves to understand the qualitative and quantitative differences that I'm talking about.

Lots of kids are afraid of thunderstorms. How many of them, at age 4, won't go outside on a cloudy day, because, they'll tell you: "If it's cloudy, it might rain, and if it rains, there could be thunder. If there's thunder, then there might be lightning, and I could get hit by lightning."

He wasn't old enough to understand an explanation about the statistical odds of getting hit by lightning on a cloudy day. He certainly couldn't talk about his feelings like an adult: "Gee, thanks mom, for pointing out that my free-floating anxiety has chosen this irrational circumstance to attach itself to! Now that I understand that, it really helps."

So you do what you can do. You teach him physical progressive relaxation techniques, adapted for children. You take him to play therapy, so he can address some of his fears that way, and meet with his therapist regularly. You keep his life as stress free as possible. You casually point out the lack of thunderstorms as you walk outside to pick up the mail on a cloudy day.

What you don't do? Is make him go outside on a cloudy day, because that leads to a panic episode, sheer out-of-control terror, way different from a tantrum about not getting his way, and believe me, you know, because you go through plenty of those, too.

Eventually, the phobia dissipates, only to be replaced by another one. If my memory serves, that was the one about the trunk of the car flying open when we were driving.

If the phobias had been the only thing going on,his life would maybe be manageable for him, but they weren't.

The assumption that somehow I blame my child for this, or that I didn't and don't try to figure out what upsets him isn't my experience.

By the way, he's nearly 9 now. He's doing much, much better than when he was 5. He reads kid's novels (the last one was Blame it on Winn-Dixie, and he got very curious about the South and the Civil War), he loves math,and knows his multiplication tables up through 9. He plays an instrument. He plays with Leggos.

He doesn't have phobias anymore, and only has nightmares 2-3 times a week now. He still has 'meltdowns', but they are shorter, and there's no biting and he seldom hits people, but he does destroy objects.He sometimes has sexually inappropriate talk, and it's a problem. He still goes to therapy, mostly twice a week,more when he's really upset, but doesn't need occupational therapy anymore, because the sensory issues are lots better. He still has little to no regard for his own safety. (No, you can't jump from the third-floor landing. No, we don't run across the divided highway.)He still needs to be reminded to use the toilet.

Yes, I know it's a contradictory picture. That's part of what makes it hard.

He still takes medication. I still worry about it.

Posted by: v. at April 11, 2008 04:04 AM

Word. What frustrates me most is the ease in which we have shifted to a reflexive medical model approach to distress, and don't even remember the contextual model of mental illness, which folks, is still considered credible, still taught in academia and receives (limited) research funding. It's plain surreal to see the contextual explanatory model ignored on a mental health blog, and the use of clinical terms dominant, and with no seeming recognition that these terms are heuristics. Aspergers, austism, ADHD and all the rest are constructs, ideas, frameworks, they are not unambiguous, valid concrete entities. This mechanistic mindset has so permeated the discourse wrt to human conditions that few here seem shaken by the depiction of a child as if he was a malfunctioning appliance. That is not a personal criticism of V. so much as a comment on the zeitgeist. Which I resist.

Posted by: flawedplan at April 11, 2008 06:45 AM

My response was not directed in any way toward the woman who shared her story. I was thinking about the first part of the post discussing the number of kids being diagnosed with mental illness which is a tragedy.

Posted by: Lisa at April 11, 2008 08:59 AM

ah v., sorry you're being ganged up on over here. with crusaders like sally and flawed plan here, you're just gonna get stomped on. that's why i gave up commenting, it's an exercise in futility. i keep reading because i'm open minded enough to understand there are two or eight sides to every story. unfortunately, the primary commenters around here are completely close minded to any other opinions than their own and are strident in voicing their displeasure with the rest of us morons.

i'm commenting now so you don't think you're alone in this. let's just keep doing our best for our children.

so i don't capitalize and i don't use spellcheck, flawedplan. who gives a shit.

Posted by: anon mom at April 11, 2008 01:36 PM

Flawed Plan,

As one who has a non verbal learning disability, which is similar to Asperger Syndrome, it greatly frustrates me that people who have never lived a day in my brain, say it isn't legitimate. As you know from my posts, I am very much against the use of psych meds. But sometimes, I feel like a lone wolf as people minimize my difficulties.

Just so you know, I was diagnosed with this before I was ever placed on meds so I know this is legitimate.

To give you a taste of what it is like to have my brain, when I communicate with someone on a non verbal basis, I have to use all my compensatory mechanisms to figure out what someone means. For example, if someone offers to do something, I can't tell from their facial expression if they are doing it to be polite or they really mean it. Like a dyslexic uses contextual clues to figure out what a word is in a book, I have to do the same with reading facial expressions.

If you still think NLD and AS aren't legitimate, picture what it would be like to deal with the people in your life and not be able to read non verbal language. What would that look like in dealing with your boss or someone important like that?

Because I don't want to make this post too long, I won't list other aspects of what it is like to have AS or NLD. But they are extensive.

Please understand that I am not justifying these diagnosis's as means for drugging. Frankly, knowing what I now know, if I had something like a learning disability or adhd and/or suspected my child did, I would keep them out of the mental health system and find alternative ways to get assistance.

But I get very frustrated when people keep saying these conditions aren't legitimate when they definitely are.

AA

Posted by: AA at April 11, 2008 02:42 PM

Nice way to ignore my point, anonmom, it wasn't the misspellings I critiqued but the apparent cluelessness about their existence. And I don't know where AA got the idea that I don't believe cognitive disabilities or mental illness are illegitimate, much less that I am against using drugs but whatev.

Posted by: flawedplan at April 11, 2008 04:08 PM

Dearest Philip and others:

I'm at my friends computer and can't stand this “Razzle Frazzle” keyboard. So I will make this short and sweet. I sincerely hope I in no way started mental health blog world war three here with my beginning comment. That was not my intent I assure you. I was just refining and trying to clarify a little on why I feel the way I do as an alternative view point. This was not meant as an attack or judgment personally of anyone here in anyway, shape, or form. I was just simply pointing out an ardent view point of my perspective of this issue in our culture and society. As a poster in a blog format, we have to be able to agree to disagree at times, and still have respect personally for each other. Even if we are on totally opposite ends of the scale with the topic being discussed. I think we all know there are alternative ways to make your point without going after another’s dignity that regularly post here. Now go to your corners, swallow the medications of your choice, and come out drooling. {laughing} Anywise, that's my two cents for what's it's worth. I will now get stomped upon for writing this post. I say stomp away! Couldn’t be any worse than what doctors have done to me. I actually enjoying seeing a good debate happen on issues and topics related to these very real questions and concerns that effect our mental health lives; just that personal attacks directed by other regular posters take it a little far in my view.

yours truly

Stan

Posted by: Stan at April 11, 2008 08:13 PM

Stan, I don't think you started blog war three. I sometimes think one of the problems with all of US society is our lack of knowledge of how to communicate with each other when we disagree. Meanwhile, I can't find a place to post a link to this article, but I'm putting it here because it seems so cool, http://well.blogs.nytimes.com/2008/04/11/better-mental-health-down-on-the-farm/

Posted by: Sally at April 12, 2008 05:48 AM

Stan didn't start WW3; he just did a writing prompt for those who want to continue this discussion with unfounded bullshit as commentary.

Posted by: Stephany at April 12, 2008 04:32 PM

V: hang in there. V's son: My hopes for you are the best.

Stephany: Thanks for your insight. Your story is often in my mind.

As a mom of a kid with disabilities, it's heartbreaking. Heartbreaking to be judged, heartbreaking to re-focus your life dreams, but most significantly, heartbreaking to look into your child's eyes and see that there is something so different or so frightening going on in their bodies and or minds.

I know now, four years into my son's journey with diagnoses, that he received an innaccurate diagnosis of bipolar at a dangerously young age. With that bad diagnosis came a slew of well intentioned, educated experts that told me what to do, what to give him in regards to medication and therapies.

It's taken me four years to get that first opinion reexamined, the meds dropped, and the diagnosis changed.

The thing is, he's never not been disabled. Bipolar was a misnomer for what was going on. His diagnosis now will probably not be what kids like him will be called when he's an adult.

This site helped me research my alternatives. Philip's rational writing helped me learn about the dangers of atypicals and of this problematic diagnosis of bipolar in children. Jumping down people's throats doesn't help them learn, prosletizing doesn't convince people. If you believe in helping people learn about the true dangers of atypicals, and the dubious state of diagnosing children in this country, I would suggest following Philip's lead... Listen. Don't attack.

Posted by: molly_g at April 12, 2008 07:37 PM

Stephany, the problem is that it's the diagnosis itself that's unfounded bullsh*t, and it's just weird to see parents who interpret their kids' behavior as a biological brain defect, weird and scary. I don't see why the people who believe in this model aren't immediately drawn to family therapy and whole family drugging as the idea of the biopsych model is that these diseases are inherited making it likely that if a child has a problem with perception, mood and behavior, he got it from the parent and the other siblings likely have it too. But we don't get that. I assure you if one of my children had diabetes, I'd get the others tested as well and everyone in the family would make preventative lifestyle adjustments (at least until they escaped;).

If the biopsych theory were consistently adhered to more, not less, blame would be placed on parents than in the halcyon days where the medical community actually believed emotional distress was caused by distressing experiences. But it's not followed consistently. Just as previously psychiatry was used as a way to condemn mothers, the biopsych model is used in a way that exacerbates family and societal problems, a perfect marketing tool for big pharma.

Posted by: Sally at April 13, 2008 03:52 AM

flawed plan, I agree with you up to a point re: heuristics. Is there such a 'thing' as childhood bipolar disorder? Is there such a 'thing' as 'autism.'?

But there is a range of functionality, and a sequence, more or less, of unfolding development (notice that I didn't say a rigid timeline) that allows a child to move and interact relatively comfortably in the world.

And when a child does not, sometimes we try to find patterns among children that are similar, and we call those patterns something, and the name gets reified, and so we end up thinking that the diagnosis is real .

In the case of what gets called, for example, 'Childhood Bipolar Disorder', I would say that there are some children who are miserably unhappy, and miserably anxious, and become miserably angry and deeply remorseful by turns, and who have a great deal of difficulty regulating their own responses to emotional and environmental stressors. There are a subset of children who dsiplay a similar enough pattern of unhappiness and activity that it gets a 'diagnosis.'

But it doesn't mean the diagnosis is a 'real' single entity, any more than it means that this pattern is caused by any one thing: gluten, vaccines, television, bad parenting,television, the education system, Big Pharma,genetics, food coloring, ad infinitum.

The question, for me, is: Are children suffering? I think so.

Is a 'diagnosis' the cause of their suffering?

There's where we disagree. There's lots and lots of misery, and I don't think that diagnosis, as misguided as it is, is the cause, any more than I think it's the answer.

What's the answer? How do we make life better for kids who are so unhappy?

I surely don't know.

And I think that the assumption that the children aren't in pain, and the even more hurtful assumption that their parents are complicit in the suffering of their children, is what many commenters, including me, find unwarranted.

Posted by: v. at April 13, 2008 09:08 AM

I don't know what you're talking about:

Is a 'diagnosis' the cause of their suffering?

There's where we disagree.

flawed plan, I agree with you up to a point re: heuristics

This isn't a matter of agreeing or disagreeing, and to suggest I maintain that a diagnosis is the cause of suffering is ridiculous. You don't know my opinion.

The heuristics I reference are not a matter of opinion either, but the way the DSM is structured. The term "mental illness" does not appear in the DSM. The terminology is "disorder," "distubance" and "impairment." This is the language of heuristic, a guide to help the clinician interpret the client's experience, for the benefit of the client, which to this day is written as a diagnostic IMPRESSION. An impression, not a fact, but an idea, opinion, and best educated guess. If not humble, then at least not the unimpeachable absolutist stance we see taken in PBS' Medicated Child. The DSM was originally founded on psychodynamics, and thinking in psychological terms was the cultural norm until the so-called "decade of the brain" which was just ten years ago. The triumph of the medical model is the issue, some of us see it as a complete disgrace, corporate, unsupported scientifically, and a repackaging of relational, social ills that does more harm than good. And those who advocate for the medical model tend to be horrible excuses for human beings. Others sit around worrying -- is the new DSM being written in bio-babble? Not everyone finds these changes noteworthy, not everyone finds their implications portentious; those who do will talk about it.

Posted by: flawedplan at April 13, 2008 12:16 PM

"...those who advocate for the medical model tend to be horrible excuses for human beings."

Well, it's good to know that they aren't simply mistaken, misguided, disagreeing with you or just adhering to the dominant paradigm.

You make me wonder if the belief in an accepted paradigm draws evil to itself, or if the dark side of the force somehow irrevocably stains the souls of the unsuspecting with its foulness.

Posted by: v. at April 13, 2008 03:27 PM

This story is truely heart breaking and I really do believe there is a HUGE difference between a mother who is trying to do whats best for her child and a mother that just wants an otherwise rammy child to just shut up and go away. My best friend teaches second grade. When she calls the parents to discuss behavioral problems, they tell her "I really dont have time to deal with this-- is there a medication we can put him/her on instead to fix this problem?" That is abuse.

Posted by: Amber at April 13, 2008 03:32 PM

molly, thank you very much.

Posted by: Stephany at April 13, 2008 09:26 PM

V.,
Your following phrase is I think what so many of us find frankly appalling: "I think that the assumption that the children aren't in pain, and the even more hurtful assumption that their parents are complicit in the suffering of their children." The fact that you are more hurt by what people think of you than by what you claim to believe is a biological brain defect of your child that makes his feelings unrelated to what happens in his life just stirs me up. It's hard for me to apologize to someone with such an attitude for perceived cruelty.

It's the eagerness on the part of people whose children and/or students (I know several elementary school teachers who whine about having to teach "bipolar" children)to wrap themselves in some sort of melodramatic robe of victimhood that is troubling.

I have a friend who lost an infant to a congenital heart disorder. She and her husband rented an apartment in the city where the neonatal intensive care unit was, her family and friends spent so much money on the care of the child and taking time off from work to spend time with the child that they suffered financial hardship for many years afterwards, and yet you never hear her or her family complain about what their child with heart disease did to them. These people years later are grateful they had the time and money to spend on their child who they loved and I suppose they have an underlying sense of the duty and morality of parenting, an expectation before the sperm even hits the egg that they're in for suffering and sacrifice, that this suffering and sacrifice is part of life, a sensibility we don't see in today's world of "well he had these big tantrums when he saw clouds in the sky so I sedated him and had his brain chemically altered forever."

If you think your child is sick because he is in pain that's one thing, if you think your child is sick because he makes life difficult for you, it means society's definition of parenting is degenerating in some very troubling ways.

If you really think your child's mood is due to a genetic disorder, don't you think there's a chance that you, his birth mother, not only likely gave it too him but may also have it. One of the hallmarks of the bipolar label is that "you can't tell you have it." What if it's your moods and feelings that are sick and unreasonable? Think about how degrading and insulting that idea is and then think again about what you are doing to your son.

Of course even if you wanted to stop giving the drugs to him now, he's been hooked at such a young age doing so is a complex medical issue and the fact that you've had that label put in his school records is something he will only over come if this pervasive, sick social trend of labeling kids bipolar is fully discredited, one of the main reasons I'm compelled to respond to folks like you. I sense you don't see your son as a human being entitled to his own life, but instead as someone who is hurting you by not living up to your expectations of what a dream baby should be.

Posted by: Sally at April 14, 2008 05:44 AM

google andrew hall cutler.

Posted by: Fred at April 14, 2008 08:25 AM

Fred, I am curious of your suggestion to Google Andy Cutler. You might want to explain to the others why his name is significant.

Sally, lord knows I cannot speak for anyone but myself here and am not--I am chiming in here about how I've moved heaven and earth for my daughter and used every penny I have/had doing so, and have not one regret. It's hard and it sucks right now, but no regrets, not one. Like I said, I can't speak for others, but it sounds like all of the moms posting here will do anything for their children and love their kids.

Posted by: Stephany at April 14, 2008 11:44 AM

Please consider adding in energy medicine for treating children with mental illness. In particular, Bach Flower Essences, can help treat mental and emotional imbalances. Mimulus for specific fears, Walnut for environmental sensitivities, Aspen for unknown fears, and more! Acupuncture is also another form of energy medicine that could help. Good luck

Posted by: Molly at April 14, 2008 12:32 PM

Well, Sally, I have to say, that I've spent my entire professional life so far, (20 years so far)working with children, both those who are typically developing and those who are not,and I've yet to meet a single perfect parent.

No matter the good face they put on it, all parents have sleepless nights,and days when they struggle with parenting. Every first-time parent I've ever counseled has moments when they feel like they have been hit by an oncoming train, long for an unbroken night's sleep, and wish they could get all the way through the grocery store checkout line without the baby crying. That doesn't make them evil, uncaring, or cruel.

The moms of children on ventilators and with trach's, no matter how selfless,competent or caring, get tired of the endless routine of suctioning mucous from their children's lungs. And their backs ache, and they worry about how they are going to manage when their kids get too big for them to lift. They might not tell you, of course, but they tell someone who knows that it doesn't make them horrible, evil mothers.

And parents of 11 year-olds who don't read well worry too, and sweat over the tests in school that their kids will probably fail, and wonder if they'll make it through high school, and make sure they do their homework anyway, or at least try,, and wish, sometimes, that they didn't have to.

I suppose, in your world, that makes them terrible, selfish parents, one and all.

Luckily, most of us have more compassion than that.

Posted by: v. at April 14, 2008 03:03 PM

V., I certainly have compassion for parents just not for parents of a 4 year old who think the child is mentally defective because he tells her "Mom, to ants, grass looks like trees." Obviously the parents you mentioned are different from parents who dope their kids for normal behavior. I'll try and patiently restate, feeling like parenting hard work is normal. Feeling like the fact that parenting is hard work means your child is abnormal or that you are more entitled to be treated like a child than your child is your situation. To compare moms of children on ventilators with moms who get p*ssed because their child runs outside to see an airplane overhead indicative of a major problem with the thoughts of a parent, not with the behavior of a child. Still I fear in speaking frankly with you, I'll push you to abuse your child in frustration so please instead of blaming the child post harshly here to me. Is there a relative who can take your son since you find him so toxic?

Posted by: Sally at April 14, 2008 03:52 PM

Sallly,

Lots of kids love airplanes and get a kick out of seeing and hearing one pass overhead. Few kids focus on it so intently that airplane noise is one of the main foci of daily life, requiring imediate cessation of all other activity, regardless of activity or location: eating, playing, drinking, bathing, watching tv, getting dressed or undressed, talking--the faintest rumble of a plane on the overhead, and everything else stops.

Lots and lots of kids enjoy talking, and many say interesting, silly, precocious, irritating and obnoxious stuff depending on their age and mood and listener. Relatively fewer will declaim for up to thirty minutes, without regard to listener, strings of sophisticated but otherwise disjointed ideas, leaping quickly from association to association, with any initial communicative intent quickly getting buried in the avalanche of images and tangentially related thoughts.

Herr's some of what I did at work today: used "talking about our weekends" and "talking about recess" to help a group of older elementary students struggling with social communication figure out how to use eyecontact and to keep a conversation going for more than one exchange.

I ate lunch with a kindgergarten student and we worked on how to get someone's attention without poking them six times, trying the strategy of calling their name. He got it in the lunchroom, and tomorow I'll see how it works during breakfast and gym. In his tough city school, he's gonna get slugged next year. This is a sweet kid who hasn't figured out any of the conventions of interaction that help kids get by, like how to ask for help, how to get someone's attention, much less how to ask or answer a question.

The parents wanted standardized testing for their 9 year old in one of the learning disability classess. So I finished the testing, and then tried to figure out if the testing meant anything about the child, or if other things are getting in the way of his learning.I've talked to his teachers and watched him in class.

I did troubleshooting on a speaking device for one of my students who can't talk. It needs new batteries.

I talked with a support worker about the usual progression of language and speech skills through the prekindergarten years.

I talked with a teacher about developing some strategies for helping a non-speaking chld who doesn't yet have the symbolic knowledge to match pictures to objects, to begin to develop some regularized system of intentional gestures
s, and a plan for beginning some object/picture matching for the things in life that he really loves. We hope we can expand that into, eventually some kind of symbolic communication.

The older I get, and the more deeply I work with people, the clearer it becomes to me that there is so much we have still to learn.

And this is despite my considerable training and experience: my years of study in anatomy and physiology, embryology, neurology, childhood development, cognitive psychology, medical ethics, and linguistics. Despite my years of work with normal and medically fragile infants, with toddlers with genetic and craniofacial anomolies, with'autistic' preschoolers and kindergarteners with 'apraxia' with middle school students who stutter, with teenagers struggling to read, with kids who can talk but won't , with kids who will never talk, with kids who can eat but won't, with kids who can't eat--

No matter how much expertise I acquire, I keep learning humility, and how much more I need to learn to better be of service.

Here, for example, I have learned that I am the soul of evil, care nothing for children, and ignorant of any treatment methodologies except drugs, and have no knowledge or experience of normal children. (Because the elementary school where I work now has over 700 students and only 10 percent are identified as having a disability. The other 90% are completely invisible!)

I bow before the considerable and extensive expertise of the commenters here, many of whom can accomplish what I can only dream of professionally--from a parent report only,derive a diagnosis, a cause, a course of treatment, and maybe, even a lawsuit or a case of abuse.

They didn't even have to bother with a complete review of the medical or treatment records, much less meet and interact with the child.

Damn, y'all are good at this!

Oh, since some of the posters here keep missing out on nuance, the last paragraphs contained a little sarcasm.

I wish it had been a more productive ride, frankly.

Posted by: v at April 14, 2008 08:29 PM

Really? Looks to me like the ride has been a stellar journey from your original defensive and incoherent post which raised appropriate questions. Child abusers are clever at gaining social sympathy. Abusers tend to be outraged that their victims show signs of abuse. Abused kids are explosive, mute, withdraw into fantasy worlds, develop learning disabilities, and accumulate mental disorders. It's common for their parents to point to such victims and say "Look what I have to put up with." One in four American kids is living with severe, concrete maltreatment that all of us would recognize as abuse, if not for the silence and secrecy. Neglecting to discuss your child's environment is a red flag and avenue of reasonable inquiry.

In your daily work with impaired children is it not recommended that you consider their environment in assessment and treatment? Are their dysfunctions and disabilities considered prima facie constitutional defects? If so you should expect to encounter advocates who find that troubling policy.

Posted by: flawedplan at April 15, 2008 05:50 AM

V.,

I wonder if you were a joke the whole time. You just keep posting examples of normal child behavior and labeling it obviously maladaptive. Here's an example, "Relatively fewer will declaim for up to thirty minutes, without regard to listener, strings of sophisticated but otherwise disjointed ideas, leaping quickly from association to association, with any initial communicative intent quickly getting buried in the avalanche of images and tangentially related thoughts." Thirty minutes, that's normal. Sure there are cases of extreme emotional distress, even mania, in children, but 30 minutes is normal...12 hours is abnormal...and the fact that you consider 10% of the children in your school mentally disabled, you are the one who decides which non speaking children are disabled and which are just afraid of you...scary, and your only defense, the classic defense of the guilty, is sarcasm. I too wish it had been a more productive ride.

Posted by: Sally at April 15, 2008 05:58 AM

Sally, I said that 10% are identified as having a disability. In the United States, public education law requires schools to provide a 'free and appropriate public education' to all children, regardless of disability.

So of course each public school tracks how many students, requiring which services and accomodations, are in each building. This data, at least in my state, is available to the general public as well as to school district employees and administrators. Many districts post those demographics on the Internet.

Now, it's possible, of course, that the wheelchairs, splints, walkers, teachers of the deaf, teachers of the blind, resource rooms, physical therapists, occupational and speech therapists, special education teachers, voice-output devices, adapted tricyles, etc,--

It's possible that these are all figments of my fevered imagination--my heinous, despicable desire to label normal children.

And yes, I, the parents, the teachers, the early intervention specialists, and all the doctors, nurses, social workers, friends and relatives that the non-verbal children in our special education classes have seen, throughout their entire lives,--

All are mistaken. Spasticity, lack of muscular control, severe developmental delay, trach's,--have nothing to do with the nonspeaking status of many of the kids we see.

None of us have ever considered the possibility of selective mutism in otherwise healthy nonspeaking children; researched or consulted about it, or linked any troubled families with any community support services.

Thank you for your insight into this.

flawed plan, I was horrified by your statistic of one in 4, or 25 % of all children, being victims of abuse, so I did some googling.

The latest data available from the United States Departemtn of Health and Human Services is from the year 2005. According to this data set, throughout the US and the District of Columbia, 899,000 children were found to be abused or neglected in 2005. The total number of children in the country in 2005 was 73.7 million, which gives us about 1.2 percent.

THe NIS-3 study, in 1993, attempted to estimate the total number of abused children using a different methodology (not relying only on cases reported and/or confirmed by child protective services). NIS-4 appears not yet to be completed.

Anyway, the NIS-3 numbers are somewhat higher--their incidence was 15 per 1000, or 1.5 percent.

Where did your 25% statistic come from?

Both studies found that about a quarter of all reported cases were found to be substantiated by CPS.

Now if one supposes that every time someone calls CPS to report a suspicion of abuse or neglect, it's true, then your 25% statistic will also be correct.

Keep in mind that all medical practitioners, (doctors, nurses, etc) all teachers and school employees, all child care workers,in most of the US, are what is known as 'mandated reporters'--legally required to notify Child Protective Services of any suspicion of abuse or neglect.CPS makes the determination, but mandated reporters must report their suspicions, not investigate the validity of a suspicion.

That almost garauntees some degree of over-reporting, which, in an ideal world of well-funded children's services, would be to the good of children.

It's also true that there are many cases of true abuse which are not substantiated by CPS, as well as cases which are not reported, and my cursory reading of the NIS-3 methodology was that it was a good-faith attempt to address this. I'm not an epidemiologist, nor an expert in public health policy, nor a statistician, so I can't guess about how well they succeeded.

No wonder that most of the reports on abuse/neglect statistics that I could find were prefaced with disclaimers about incidence/prevalence.

No-one knows the number, but it's always too many.

flawed plan, thank you for caring about my child's environment. It's been an interesting adventure, often to the surprising benefit of everyone, to make the environment more comfortable for him.

We were lucky to find a gifted OT who could help give us insight into the kind of activities that were calming to him, and those that helped to strengthen and organize his activity level and concentration, and raise his level of physical balance and bodily awareness. Brava!

Every day, we work to integrate those kind of activities into our regular lives, as well as taking time for the really large amounts of just plain fun physical activity he likes, and the 'sports' he craves.

His loving teacher has helped me figure out how to channel his considerable intelligence and cuiosity, and has encouraged him to balance that with other kinds of exploration in art and music.

She's been great about guiding him towards literature, and engaging him beyond just accumulation of more and more random facts, while helping me figure out how to keep his curiosity and interest in the natural world.

His therapist has been a resource in terms of honing and refining my own parenting skills, continually giving me more insight, and being a rock for him. She's helped him and me move along the long, not-yet completed road of toilet-training. (He's now 9.)

Philip, I had hoped, that when I wrote to you, I could share some of the anguish and frustration that even a loving and educated parent feels when dealing with a child who is suffering,with no single clear-cut cause, who has explored most avenues of help, and is left with medication, because that's the only thing that seems to offer relief. And who worries about the dangers of medication, too.

I hoped it could open up some dialog, and that some sense of alliance could come about, but I was mistaken about that.

Thanks again for your hard work and research on all of our behalf.

Your personal story and your investigations mean a lot to me, and I'll keep reading. But I think my participation in this particular conversation has reached its conclusion.

Posted by: v. at April 15, 2008 01:01 PM

You came to play us. Funny how "you'll pry my kids drugs from my cold dead hands" grandstanding routine didn't leave every single reader here genuflecting in awe of your brave and moral victim stance, but we sure know all about the trials and tribulations in the life of you, and clearly that is all that matters.

You're just creeping me out now, 400 words devoted to disputing the prevalence of child abuse, you're certainly doing god's work out there.

No wonder that most of the reports on abuse/neglect statistics that I could find were prefaced with disclaimers about incidence/prevalence.

And those disclaimers point to the under-reporting of incidents, but since you ask I got the one-in-four statistic from the CDC, AMA:
http://www.findcounseling.com/journal/child-abuse/child-abuse-statistics.html

and testimony last week at the Texas Human Services Committee on Child Abuse by Madeline McClure, Executive Director of Texas Association for the Protection of Children, who said what anyone working with kids should already know: that the effect of trauma on abused children looks like severe mental illness and mimics ADHD and similar diagnoses du jour; that without treatment abused kids are more likely to abuse alcohol, drop out of school, perpetrate social aggression, develop personality disorders, end up in jail, prostitution, commit suicide or survive homeless, and abuse their own children. She cited 71,000 children confirmed for abuse in TX last year, duly noting that according to the FBI the number can be tripled for an estimate of actual cases. (Add to that the 412 children removed from their godnut cult here last week. What kind of treatment du jour do you predict for them, V?)

Your comments make me throw up in my mouth. Anyone reading this thread from a good faith interest might look here for a helpful guide in understanding child abuse statistics.

Posted by: flawedplan at April 15, 2008 03:05 PM

Wow, getting in on this thread late in the game, but I felt the rare need to comment.

I find the attitude that the only possible explanation for this child's behavioral/emotional issues is abuse or bad parenting rather disturbing. What if we took the same attitude towards adult mental illness? Everyone with schizophrenia, bipolar disorder, or depression is clearly being mistreated by a spouse, roommate, or sibling. How much sense would that make? How much sense does it make to assume that disorders commonly seen in adults could never, ever, under any circumstances be seen in a child?

Now, I'm not going in the other direction and giving a free pass to anyone either. Yes, abuse and poor family dynamics can cause behavioral issues as well - but that's the point - we don't know! No one on this board knows this woman or her son, so acting as if you have some sort of explanation is ridiculous. And to the poster who speculated that his access to small shoes must be a sign of abuse - yikes, I speculate that you have never interacted with a child with a sensory disorder. Trust me, there are children who will melt down and refuse to ever wear shoes until they're provided with a pair that feel 'right' to them.

I'm a speech therapist and work with children with all sorts of developmental issues. I can share a couple of truths with you. First, sadly, the parents are almost always blamed for whatever behavioral issues the kid has, even if they have a diagnosis like Down Syndrome or autism. It's reminiscent of when we accused women of causing autism by being 'Refrigerator Mothers". Second, when a child has a disorder that includes behavioral / emotional disturbance, all the structure, discipline, and consequences in the world won't make that just disappear (as I've witnessed in children who work with behavior therapists all day every day). It may help, slowly, gradually, over a long period of time, but the idea of a good spanking or time-out fixing everything is completely bunk in those instances.

Posted by: Wow at October 18, 2008 01:17 PM

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