Two years ago I wrote about the problems we face trusting research findings. To bring you up-to-date, here is my follow-up post. Unfortunately, the situation isn't much improved.
The information, or misinformation, we face daily
You may have read the recent study out of Warwick Medical School in the UK suggesting that kids from families that frequently moved when the child was young (resulting in child often-changing schools) have an increased risk of psychosis. I imagine there a bunch of parents feeling guilty that they may have “caused” their child’s mental health issues because they frequently moved years ago. This type of interpretation, or misinterpretation, is all too common. Hardly a day goes by when we don’t hear another such aspersion from the news media. Why might this be off-base? That is correlational and observational-type research (not randomized or double-blinded); it’s not cause-effect. It’s simply indicating an apparent association between these two things; moving, and later evidence of psychosis. There are ample alternative explanations; for example, given that schizophrenia is predominately genetically-based, and can lead to job and housing instability, it’s reasonable to assume that families with a higher schizophrenia-loading are more apt to move, and it’s more likely that one of the children will later show some signs of psychosis. One may not have “caused” the other as the news reports would have you believe.
What made all the difference?
How are we able to cease making such associations between likely unrelated events? Historically, such capacity is relatively recent; think about it, how did we come to stop using ‘bled-letting’ to “cure” illnesses? What made the medical community finally realize these approaches were ineffective, and how did we come to realize that subsequent medical treatments were effective beyond simply doing nothing (or draining the blood out of somebody)?
Randomization
Yes, that simple word, but not so simple a process, saved the day for medicine and all subsequent treatment approaches to this day. The concept is relatively recent; first hypothesized and documented in the 1930’s, but not used to assess surgical treatment until the 1960’s. In the absence of randomization and, even better, single or double-blind controls, there are all sorts of things that can make you think the treatment works, or doesn’t work, when it really does, or doesn’t. These things are called confounding variables, and they wreak havoc on a study’s or a “treatment’s” apparent result or effect. Keep in mind that blood-letting was the treatment of choice for 2000 years and continued into the late 19th century. So much for basing a treatment on one’s clinical observation.
How much havoc?
Well, here’s the sad truth; when it comes to the predictive value of studies, randomized trials have an 85% Positive Predictive Value (PPV) rate. However, once you leave the world of randomization, it gets really bleak, really fast, with PPV dropping to between 20% and .1% for nonrandomized epidemiological studies (you know the ones, announced daily on the news saying that if you eat something in particular you’re going to get some type of horrible malady; or if you move, your child may become psychotic). This led to the prominent researcher, Dr John Ioannidis, asserting that half of all research findings are false (even worse, he suggested that 90% of all medical research is inaccurate, and 50% of the research deemed ‘most reliable’, in the most reputable journals, is inaccurate). In that regard, it doesn't matter if the research is coming from the most reputable of journals; it was still found to be flawed (see hormone-replacement therapy, vitamin D for heart disease, and coronary stints, among countless of other research topics).
It's also common to find a self-serving statistical sloppiness. In a 2011 analysis, Dr. Wicherts and Marjan Bakker, at the University of Amsterdam, searched a random sample of 281 psychology papers for statistical errors. They found that about half of the papers in high-end journals contained some statistical error, and that about 15 percent of all papers had at least one error that changed a reported finding—almost always in opposition to the authors' hypothesis. These errors have far-reaching implications. For example, claims based on fMRI brain-scan studies are increasingly being allowed into court in both criminal and civil cases. However, study in 2009 found that about half of such studies published in prominent scientific journals were so "seriously defective" that they amounted to "voodoo science" and "should not be believed."
What to do?
We’re bombarded daily with news of the ‘latest research’ asserting one thing or another. What can we believe? I wish I had an easy answer for you. All I can communicate, as emphatically as possible, is that if the research is not based in randomization, then it’s a crap-shoot. Moreover, factor the all-too-common politicization of research findings that further bias the results. Bottom-line: always be skeptical, always look below the surface, study the research design, do not take the news reports at face value, and don’t take the reseacher’s findings, as reported directly in the study, at face value. In that respect, lots of researchers will report findings that sound convincing (they want to get published, get tenure, and be seen on 60 Minutes) but are based in correlational or even purely observational designs, both of which are ripe for errors. To make the matter worse, even randomized designs can have problems and inaccurately skew the results in a favorable light (see “enriched” design).
Where do we go from here?
We have a few options:
1.) read and accept research results, as the mainstream press and journals would prefer,
2.) believe nothing and remain skeptical about everything you read and hear,
3.) learn how to effectively analyze research, or
4.) don’t read anything and turn off your TV.
Option 4 doesn’t sound so bad, but I suggest options 2 and 3. It’s not easy, but the alternative is, in my opinion, worse.
If you want some resources to learn about effectively interpreting research, email me at jcarosso@cpcwcare.com.
God bless you in your ongoing pursuit of the truth.
Dr. John Carosso
To tell or not to tell
I am often asked by parents whether or not they should tell their child the diagnosis? It’s a good question, and of course the answer is somewhat complex.
Focus on symptoms, not the diagnosis
I find that it’s rarely beneficial to place a ‘label’ on the symptoms, and subsequently on the child. Rather, I find it helpful to focus on the two or three primary issues or behaviors and explain to the child that you, your child, and the treatment team are going to work improving those issues, e.g. compliance, social skills, safety awareness… The more specific you can be in describing the targeted behavior(s), the better. So, rather than tell a child that he or she has “ADHD” or “autism” and you’re going to treat that “disorder”, I find it more helpful to explain to the child that they have challenges, for example, paying attention in class, or with standing too close to friends, and they’re going to be helped in that regard by specific strategies.
Why not explain the diagnosis?
Explaining the diagnosis can be counterproductive. The child can feel ‘stuck’ in their diagnosis, which often can be stigmatizing and have negative connotations, and people often come to identify with their diagnosis, ie. “I’m ADHD”, or “I’m autistic”, or “I’m Bipolar…”. No, your child is not ADHD, or autistic; rather, your child has a diagnosis of autism; or has a diagnosis of ADHD…; the diagnosis is not ‘them’ as a person but is only a small part of their many wonderful traits and characteristics. Also, sometimes kids will use the diagnosis as an excuse, “I did that because I’m ADHD…” that too is counterproductive.
When to explain the diagnosis?
I find that, as children mature, they become increasingly inquisitive and insightful. At some point, it’s not uncommon that a child begins to sense that something is ‘different’ about them compared to their peers. It’s not uncommon that, in those situations, the child may approach the parent and ask “what’s going on with me… why am I different… I’m not like other people….” In those instances, it’s likely time to explain the diagnosis while, at the same time, focusing on strengths, abilities, and that the child IS NOT their diagnosis, but that the diagnosis simply reflects a cluster of signs and symptoms with which the child and parent will continue to target in treatment.
It’s also important to emphasize that the symptoms can be improved, and you can site examples of your child having risen above the ‘diagnosis’ in any number of ways.
At times kids will find the information about their diagnosis to be a relief ("I always knew I was different, but never knew why") but others may feel quite distressed with the news. Use a reflective approach (see my earlier posts on that technique) and remain supportive and reassuring. It may help to allow them the opportunity to meet other kids with the same diagnosis (a support group can be quite helpful).
Sum it up
I find that, in general, it’s best to not focus on labels and diagnoses but, rather, describe signs and symptoms that are going to be targeted and overcome. This strategy is empowering, motivating, and directive. However, there are times to discuss the diagnosis, especially if the child is relatively mature, has good self-awareness and insight, and is asking questions about why he or she seems or behaves ‘differently’ from peers. There are a number of helpful books and resources to help with this process; feel free to email me if interested.
Hope that helps. Feel free to email any questions at jcarosso@cpcwecare.com
God Bless!
Dr. John Carosso
Which Wolf are you Feeding?
I don't usually post stories such as this, but this one is too good not to share:
One evening an old Cherokee told his grandson about a battle that goes on inside all people. He said, “My son, the battle is between two ‘wolves’ inside us all."
“One is Evil. It is anger, envy, jealousy, sorrow, regret, greed, arrogance, self-pity, guilt, resentment, inferiority, lies, false pride, superiority, and ego.”
“The other is Good. It is joy, peace, love, hope, serenity, humility, kindness, benevolence, empathy, generosity, truth, compassion and faith.”
The grandson thought about it for a minute and then asked his grandfather, “Which wolf wins?”
The old Cherokee simply replied, “The one you feed.”
There is debate over where this story originated and who wrote it. No matter, I hope you find it to be moving, motivating, and inspiring.
God bless.
Dr. John Carosso
The Study
A study funded by the John Templeton Foundation and carried-out at The University of Akron, Case Western Reserve University (CWRU) and Baylor University found that teens with substance abuse issues had significantly better outcomes to the extent they had a foundation of spiritual beliefs.
In fact...
Spiritual belief resulted in overall better outcomes in terms of increased rates of abstinence from substances, a decrease in narcissism, and an increase in pro-social behavior.
It was also found that a good portion of teens not uncommonly transitioned, over the course of their stay at the facility, from less to more spiritual, and those who did had the aforementioned better outcomes.
By the way...
Teen Challenge has been touting those types of outcomes for decades.
Other teens too?
Based on my own clinical and personal experience, spirituality has a highly beneficial grounding effect; it is far more compelling to ‘stay on the straight and narrow’ if one believes that there is bigger, better, and far more powerful entity who makes the rules, and to whom one will have to answer. Otherwise, we’re just dealing with rules made by men with no ultimate authority and, really, in that scenario, it's hard to be inspired. Of course, those who are spiritually-minded can also take comfort in believing that that this same omnipotent entity is on our side, more than willing to intervene when asked, and knows precisely how to resolve the problem to make things right.
Treatment approaches
In my humble view, it seems foolhardy to have any broad-based treatment approach not include sound and empirically-based therapeutic approaches, sound nutrition, exercise, and a heavy dose of spirituality. Try it for yourself, your children, and teens. I’ll bet you’ll like the results.
Dr. John Carosso
As parents, we expect kids to follow directions when told to do so; and often we have expectation that the response will be immediate. Much to our despair, it’s not, and likely shall never be. That’s the important point; kids are not automatons (or at least mine aren’t – I suspect yours aren’t either).
I tell parents during workshops that we don’t expect a table or chair to move if we tell it to; so why do we expect our kids, who have their own agendas, wants, and distractions, to immediately follow our commands with a sense of urgency? In fact, we might have better luck with that wooden table.
So, should we simply give-up? Okay. Well, maybe not. Instead, how about changing our expectations and, in doing so, lower our blood pressure. Recognize that, often, kids need that ‘softer and closer’ approach (see former blog on the subject) and close proximity if not gently taking their arm and getting them started on the task. Offering to help them begin the chore also helps.
Backing-up our direction with firm consequences always helps, with accompanying soft-spoken reminders of both rewards and consequences that can be earned with compliance.
However, to our avail, we as parents tend to rely on pestering with an ever-increasing volume. This approach is the least favorable and results in the most frustration and bad-feelings for all involved. Remember that emotion and words are your enemy, while a softer and closer approach, and clear expectations and consequences, are your friend. Try it, you’ll like it. Now, go get softer and closer with your kids.
Dr. John Carosso
Can you relate to this?
You get into an argument with your spouse. You know your point is valid, but you’re having trouble getting your mate to acknowledge your viewpoint; instead, he just wants to “move on” and “forget about it.” So, he tries to change the subject but you’re left feeling unheard and misunderstood. Given the situation, you’re simply not ready to “move on” and you feel ‘stuck’ and frustrated. In your subsequent stewing over the problem, you think that, if only your point of view was acknowledged, even in disagreement, you’d feel more at-ease and prepared to resolve the matter.
Kids feel the same way
The same thing happens every time you want to “move on” past your child’s disappointment, frustration, anger, or problem. Okay, here’s the scenario: your child complains that he does not want to stop playing his new video game, you just purchased for him, to empty the trash. You abruptly respond, in irritated fashion, for him to follow your direction “NOW” and ignore his obvious distress. I understand that there are situations when there is no time for discussing the matter but you may find, just as with your prior argument with your spouse, that a simple ‘reflective’ comment, acknowledging your child’s feelings, will help him to more quickly move beyond his feelings, put them aside, and carry-out the assigned task.
An example please
A comment such as “I understand it’s frustrating to be taken away from your new game. After you finish the chore you can return to playing.” Feeling ‘heard’ is extraordinarily powerful; it bolsters a sense of comfort and then allows for moving beyond, and past, the problem at hand. Otherwise, we tend to feel ‘stuck’ in the argument.
Also to share success, and show empathy
Reflective listening is vital in all relationships, for topics that are both positive (“I’m so happy for your accomplishment, you worked so hard…”) and negative (“you feel sad that your friend didn’t show-up, that can be disappointing”). In regards to this latter situation, the child will sense his feelings were acknowledged, and be willing to move forward to problem-solving, e.g. “why don’t you call your friend Timothy and see if he wants to come over instead.” In the absence of reflective listening, there is a tendency for your child to become argumentative (“I’m not calling Timmy, I wanted Jim to be here…”).
Give it a try
You can more readily avoid such conflicts with your child, and any other person in your life, by listening for, and acknowledging, their feelings. Try it; you may find yourself feeling happier too.
Grandmother receives a nasty letter
You undoubtedly heard by now of the over-the-top, vicious and shameful letter a family in Canada received about their child who has autism. Apparently the neighbor was put-off by the child’s behavior and wrote a hate-filled letter of complaint that was full of insults and vitriol.
Our Reaction
Of course, all reasonable people react with shock, anger, and disdain that a person could be so hostile, thoughtless, and compassionless. We feel for this child and his family, and pray for the child’s future and happiness.
Parent’s Reaction
The child’s mother provided a moving response, indicating that she fully recognizes her child’s behavior can be challenging, and that she does her best to educate neighborhood children and others about his condition. She emphasizes that, despite his condition, of course he deserves respect and to live without ridicule.
Deeper Implications
This situation is clearly extreme and, one would imagine and hope, out of the ordinary. However, it reflects the all-too-common experience of parents of children with autism, and their child with autism. In that respect, how many parents have stories to share of glaring looks and rude remarks, while their child faces teasing, bullying, ridicule, and alienation.
Where do we go from here with this troubling event?
Well, we take a terrible situation and, to the extent possible, we learn from it. Learn what? Well, a few things:
1. We highlight this mother’s point that educating others is vital. If your child with autism is going to come in contact with others in the neighborhood, at a club or sport, in the classroom, or wherever, it’s imperative, to the extent possible, to help those children and adults to know, ahead of time, what to expect from your child and how to react. There needs to be an understanding that, despite some potentially odd behaviors, your child is delightful, friendly, playful, and pleasant.
2. To the extent possible, a child with autism tends to need direct adult supervision during such encounters. If not you, then an adult who knows and understands your child needs to be present to intervene as needed and facilitate a more successful social experience. In that regard, leaving the child to his or her own devices is less than advisable; it can result in all sorts of problems and leaves your child vulnerable to being ridiculed and ostracized.
3. We continue our unending quest to educate the public at large about autism; its characteristics and challenges. We spread the word that the stereotypes are largely unfounded and only serve to foster prejudice. Clearly and unquestionably, the more the general public knows and understands, the better for children with autism and their families.
Moving on
We wish this child and his family nothing but the best, and to live in peace and harmony in their community. We want the same for all those struggling with disabilities. So keep fighting the good fight, and while it sometimes may not feel like it, know that you have a multitude in your corner.
God bless.
Written by Dr. John Carosso
What was that all about?
You remember the recent headline, based on a study from JAMA Pediatrics (August 12, 2013), claiming a link between induced and augmented labor and the child later receiving an autism-related special education services down the road. The study looked at birth records from ’90 to ’98, and subsequent educational records from ’97 to ’07.
So what’s the problem?
Emily Willingham of Forbes provides a concise and thorough breakdown of the study’s results, and accurately (in my opinion) concludes that the study, and most studies like it (my conclusion) are quite misleading for lots of reasons including that there is no proven ‘cause-effect’ relationship; only a loose correlation, and many excluded relevant factors. It should also be noted that the issue at hand is inducement and augmentation; when considering only inducement, the effect was 1.1; when adding augmentation it rose to a not especially compelling 1.27 (13% and 27%, respectively).
Other Factors
Factors not considered in the study included mother’s BMI pre-pregnancy, father’s age, child head circumference, specific child birth weight, mother’s insurance status, family socioeconomic status, the presence of any sibling births in the cohort, and if there was any autistic sibling(s). It would seem that these are important factors. Also, interesting, the study looked at link between autism and birth year, with the rates decreasing from 50% to 11% when comparing 1994 and 1998. Your guess is as good as mine as to what that means, but it adds further speculation to the results.
Wrap-up
Willingham wraps-up the conclusions rather succinctly and logically, based on the data delineated in the study, she writes:
“If anything, based on earlier literature, it (the study’s results) adds a slight if only mathematical confirmation of the perception that births involving autistic children can be associated with more complications, such as the presence of meconium, gestational diabetes, and fetal distress, than births involving non-autistic children. And that points to induction and augmentation as useful in these situations, not as problematic, and certainly does not affirm them as a risk.”
In fact, one of the authors, Dr. Chad Grotegut, M.D., stated:
“This does not mean that labor induction and augmentation cause autism. It simply demonstrates an association between the two, but we don't know what’s causing this increased risk. We don’t know if it’s the mom’s medical conditions or fetal conditions that warrant labor induction or augmentation, the medications used, events that occur prior to or during labor, or something else all together that might explain the association. There are clear benefits to labor induction and augmentation for both moms and their babies. Given that we need more research to determine what is actually causing this increased risk for autism, the results from our study should not be used to change current practices in labor and delivery.”
Just Another Example
This is yet another example of the need to read and study beyond the headlines. It’s important to try to find the actual article and wait for subsequent analysis before you draw any conclusions. Also, note that many on-line news sources are paid by advertisers per ‘click’; the more clicks they can elicit from you, the more money they make. Consequently, the allure of an alarming headline, to compel you to ‘click’ and read further, is quite tempting.
Okay, enough about that for now. I hope that helped to clarify that issue.
God bless!
Written by Dr. John Carosso
“Natural” is better?
I often hear from parents a preference for “natural” alternatives to their child’s emotional or behavioral issues. Examples include Omega III and tyrosine for ADHD, melatonin for sleep, valerian for anxiety. The idea is that these supplements are naturally occurring substances and not artificially manufactured by pharmaceutical companies. Consequently, they are “better” and healthier for their child.
Are they healthier?
By and large it would seem that there are less side effects and, in general, most supplements could be described as “healthier” given they are “natural”. In that respect, most prescribed medication has no inherent nutritional value especially compared to something like the Omega III’s. However, are they ‘better’ for you or your child? The truth is that we often don’t know about long-term effects and the possibility of adverse reactions of herbals and supplements. For example, I know of parents relying on caffeine to address their child’s attention deficit and hyperactivity; caffeine is definitely ‘natural’ but do you think it’s the best option? Not that caffeine hasn’t been shown to be somewhat effective, but how much should you give based on your child’s weight, how many hours will it last, and what to after your child ‘crashes’ and thereafter feels worse? Also, how often do we hear today of something being “healthy” only to hear otherwise tomorrow. Just the other day I read of a link between Omega III and prostate cancer. Say it ain’t so; Omega III, the wonder supplement that is known for all things good, may have some nefarious long-term effects? To add salt to the wound (no pun intended) and cause more confusion, there has been plenty of subsequent analysis suggesting that study, suggesting such a link, was flawed and the headline very misleading. In fact, there is a lot of research to suggest just the opposite; that Omega’s reduce the chance of cancer. Yes, research results can be very confusing and headlines can be quite over-blown.
What’s the real problem?
The big problem is that we often don’t have quality clinical studies to help us determine what type, and at what dose, to prescribe of any given supplement, especially for kids. Also, each brand may have different amounts and purities of any given active ingredient. Consequently, it tends to be somewhat of a crap-shoot. We also lack information about long-term side effects. Example: is there a long-term effect of melatonin?
Are the prescribed meds any better?
We have clinical studies helping to determine the efficacy of any given medication, at particular doses, for children and adults. We also tend to have an understanding of long-term effects. Example, we have over 50 years of research targeting Ritalin. Moreover, it’s abundantly clear that some prescribed medications are very effective; namely the medications to treat ADHD (something like 80% of ADHD children respond favorably in terms of symptom relief). Some depressed and anxious kiddos also respond very favorably to anti-depressants, and there are very effective medications to target mood stability and outbursts. Supplements sometimes have a pronounced positive effect, but more typically the effect is rather modest compared to their prescribed counterparts.
But…
Just like that Omega III study I mentioned earlier, the same holds true for prescribed meds. The research results can be contradictory and suspect. Studies are often carried out by the same pharmaceutical company who is later selling the medication, which can lead to, well, questionable favorable outcomes. Also, once you move past the ADHD meds, it can be hit-or-miss regarding how most kiddos are going to respond. Then there’s the whole other issue of meds being used off-label.
So what should you do?
It seems quite reasonable for parents to pursue natural options, but do so with guidance from a trained and experienced practitioner who has such a specialization. In that regard, certainty you wouldn’t consider giving your child medications without a doctor’s prescription; the same holds true for supplements and natural remedies. Locally, in that regard, I often refer to Dr. Faber of The Children’s Institute; Dr. Joe DiMatteo of the Medicine Shoppe; Dr. Suzanne DaSilva; and Dr. Phillip DeMio. If you have an interest in exploring prescribed medications, you won’t do better than Dr. Robert Lowenstein, M.D., Board Certified Child, Adolescent, and Adult Psychiatrist right here at Community Psychiatric Centers. It’s best to not assume that because something is considered “natural” that it’s “better” than a prescribed alternative, or that it will necessarily be healthier. Get fully informed and utilize experts in the field.
Hope you found this to be helpful. Please let me know your thoughts and experiences using supplements and natural options at jcarosso@cpcwecare.com
The Study
Pediatrics (2009, November) compared traditional early intervention approaches commonly offered in the community (S/L, OT, Specialized Preschool) to the more intensive Early Start Denver Model (ESDM) based in applied behavioral analysis.
Who was assessed?
Forty-eight children diagnosed within the autism spectrum, between 18-30 months of age, were randomly assigned into one of the two groups, and assessed at one and two-year follow-up.
What was the intervention?
The ESDM model integrates applied behavior analysis (ABA) with developmental and relationship-based approaches. The intervention was provided in the toddler’s natural environment (the home) and delivered by trained therapists and the child's trained parents. The children received, on average, 15 hours per week of this intervention. The Assess and Measure (A/M) group received an average of 9.1 hours of individual therapy (S/L and OT) and an average of 9.3 hours per week of group interventions (eg, developmental preschool).
Results?
After the first year of treatment, both groups showed improvement, but the ESDM group improved a whole lot more. There was even more improvement after two years. In that regard, the ESDM kids increased in IQ by 17.6 points, A/M by 7.0. This increase was largely due to gains in receptive and expressive language (18.9 and 12.1, respectively) compared to 10.2 and 4.0 for the A/M group. Moreover, adaptive behavior scores remained stable for the ESDM group, but tended to decline (regress) in the A/M group. Furthermore, children in the ESDM group were significantly more likely to improve in diagnostic condition (move from Autistic Disorder to PDD, or progress to not having a diagnosis at all) compared to the A/M group (29.2% progressed compared to 4.8%).
What to make of this?
Seems pretty clear that early intervention is vital; both groups demonstrated improvement. However, the kiddo’s receiving more intensive intervention based in the ESDM model, which appears to incorporate elements of discrete trial, verbal behavior, and RDI, demonstrated significantly greater progress. It’s worth noting that the children received intervention from therapists and the parents were trained in the techniques and carried-out the strategies independently, which is vital for parents to consider given the ongoing cut-back in services. It’s imperative for parents to learn how to implement strategies and do so when any opportunity presents in the natural environment. In the meantime, continue to fight for your child’s services, recognizing that the traditional approaches (OT, S/L, and specialized preschool) are very helpful, but not as effective as the more intensive and individualized treatment that based in applied behavioral analysis. It would seem logical that a combined approach is even more helpful.
See the study for yourself: Click Here
Feel free to comment at jcarosso@cpcwecare.com; I’m also available for evaluations and consultation.
God Bless.
Dr. John Carosso
