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ADHD RESEARCH UPDATE - Vol. 15, January 1999
**********************************************************In this issue.....
* Pervasive Developmental Disorder (PDD) misdiagnosed as ADHD
* Can children detect the effects of stimulant medication?
* Adolescent outcomes for boys with persistent ADHD
* The risk of treatment vs. nontreatment
* Variations in the treatment received by children with ADHD
- Reader Questions -
"My child had side effects to Ritalin. What should I do?"
"The medication my child is on seems to be helping at school but we are having real problems with her behavior at home. Any suggestions?"
* PERVASIVE DEVELOPMENTAL DISORDER (PDD) MISDIAGNOSED AS ADHD
In the last few weeks I have had several subscribers ask questions about Pervasive Developmental Disorder (PDD) and how it relates to ADHD. The reasons for these questions has been confusion about the diagnosis of PDD, and wondering whether their child may have been diagnosed. This is an important issue so I thought I would address it in the newsletter.
There are several different types of Pervasive Developmental Disorders (Autism is the most widely known) and all are characterized by severe and pervasive impairment in several areas of development including reciprocal social interactions skills, communication skills, or the presence of unusual and stereotyped behavior, interests, and activities.
Children with a pervasive developmental disorder will generally communicate and behave in ways that are distinctly deviant relative to their peers. For example, it may be exceedingly difficult or impossible to engage in a typical "back and forth" conversation because the child is so much in their own world. In severe cases, this may occur to such an extent that the child seems oblivious to the presence of others. There is often an interest in nonfunctional routines or rituals and an insistence on things being done in a particular way or order. For example, taking a different route to school may be met with an extreme reaction that is clearly outside of what would be considered to be a normal type of preference for the familiar. There can be a fascination with movement (e.g. preoccupation with the spinning wheels of a toy) and the child may become highly and unusually attached to some inanimate object (e.g. a piece of string or a rubber band.)
Children with milder varieties of a PDD, however, will not necessarily be so easy to spot. This is especially true when their is no co-occurring mental retardation and when the child's language skills are not severely impaired. As a result, such a child may sometimes be misdiagnosed with ADHD as a result because their unusual behavior can lead to some of the same symptoms that characterize ADHD. In fact, however, ADHD is specifically excluded as a diagnosis if the symptoms are present exclusively during the course of a pervasive developmental disorder. When such a diagnostic error occurs, the results are quite unfortunate as the appropriate treatment for a child with PDD is quite different.
The January 1998 issue of the Journal of the American Academy of Child and Adolescent Psychiatry (pages 113-114) has a very nice clinical discussion of this diagnostic issue. The author of this study discusses his experience with a number of children with PDD who had been misdiagnosed as having ADHD. They were brought to see him by their parents primarily to assist with medication issues, and it was only in the course of a careful evaluation, that the diagnostic error was identified.
According to the author, the reasons for the misdiagnosis were that none of the boys - who presented during the early school years with varying degrees of inattentiveness and hyperactivity/ impulsivity - had the most obvious and overt signs of a PDD such as ecolalia (i.e. frequently repeating back what was said to them) or self-stimulating behaviors. In addition, none of the children were retarded.
A careful history revealed, however, unusual behaviors and interests in all the misdiagnosed children. In fact, all the children as infants and/or toddlers had at least two unusual interests or behaviors associated with PDD such as being overly invested in lining up toys, repetitive opening and closing of doors, gazing for long periods of time at spinning records and/or lights, hand flapping, or extreme preoccupation with certain items. All were described as socially withdrawn as infants and they showed little or no interest in playing with peers.
At the time of their evaluation when the children were at least 9 years old, these more obvious signs of disturbance and unusual behavior were no longer present. All the children continued to have real difficulties establishing age appropriate peer relations, and tended to be isolated and socially inept. In other words, they just did not seem to know how to interact with their age mates and were generally not particularly interested in doing so. Changes in their daily routines were especially hard for them to tolerate and their degree of rigidity in this regard was quite problematic.
All these children had initially been diagnosed with ADHD, and treated with stimulant medication which resulted in little success. Why had the misdiagnoses occurred? As noted above, all the children did display several symptoms of inattention and hyperactivity/impulsivity which contributed to the ADHD diagnosis. Most practitioners will have much more experience with ADHD than with PDD, and may thus be biased towards making the former diagnosis. Stimulant medications are known to be effective and are believed to be quite safe, so they may often be prescribed just to see if they will help. It is also the case that given today's demands on physicians and the limitations provided by many insurance plans, the time required to do a careful evaluation to disentangle these issues is often not done.
Should you have concerns about the possibility of a misdiagnosed PDD in your child, I would strongly recommend that you consult with an experienced child psychologist, child psychiatrist, or developmental pediatrician. PDD's are rare and occur much less frequently than ADHD, so the odds of a child being misdiagnosed are probably quite small. Nonetheless, this is a real problem when it occurs because parents wind up being completely misinformed about their child's condition and the type of assistance that he or she really needs.
* CAN CHILDREN DETECT THE EFFECTS OF STIMULANT MEDICATION?
Children with ADHD are known to be notoriously unreliable when it comes to providing information about their own behavior. Thus, it is not uncommon for a child with ADHD to deny having any difficulty with attention, activity level, or impulsivity. How about the beneficial effects of medication, however? Is a child with ADHD able to tell when he or she is receiving medication and whether it is helping. An interesting study that was published in the November 1998 issue of Experimental Clinical Psychopharmacology (pages 375-389) suggests that for many children with ADHD, the answer is no.
In this study, 17 children were examined in 3 different experiments to see whether they could reliably identify the effects of methylphenidate (i.e. the generic version of Ritalin) or d-amphetamine (i.e. the generic version of Dexedrine) at doses that are typically used in clinical practice.
In the study, the children participated in several different laboratory tasks of sustained attention and impulsivity when they were received different doses of the medications or a placebo. Their actual performance on the tasks was measured and children were also asked about whether they were able to identify any differences in their performance.
As expected, there were clear differences in how children performed on the different experimental tasks when they were receiving either of the medications as compared to placebo. As has been shown in numerous other studies, the quality and accuracy of children's task performance was enhanced when they were receiving the medication.
Were the children aware of this, however? In the majority of cases the answer appears to be no. In fact, although children were able to differentiate medication from placebo under certain conditions, overall, they were not able to make this distinction with any real accuracy. In other words, even though the medication was shown to impact their performance in significant ways, most children were still not able to tell when they were on medication and when they had received a placebo. Of course, this was not true for all children but it was the case for the majority.
The importance of this finding - which certainly is consistent with my own clinical experience - is that parents can and should not rely on their child's report to determine whether any medication that has been prescribed is being helpful. Just like children one would not rely on a child's report of his or her own symptoms to make the diagnosis of ADHD, one can not rely on the child's report to assess the effectiveness of treatments that have been implemented. Instead, one needs to make these determinations based on the observations made by adult informants who are in a good position to observe the child's behavior. If your child is only receiving medication during the school day, this would be the teacher.
Now, when a child is opposed to taking medication, the fact that he or she may be unable to notice any beneficial effects can be a real problem. This is when it can be helpful to make sure the child understands the reasons for taking the medication, and where the benefits that others have observed can be carefully explained. Ideally, there should be some objective evidence of such benefits that can be reviewed - i.e. better school work, better behavior ratings, getting along better with peers, etc. that can be presented. Of course, working hard to understand the reasons for your child's objections to taking the medication and trying to discuss these in a concerned and empathetic way is also an essential part of this process.
* ADOLESCENT OUTCOMES FOR BOYS WITH PERSISTENT ADHD
One of the most important areas of research about ADHD is the impact that having ADHD can have on children's long term development. This is especially true for children whose ADHD persists into adolescence, as appears to be true for somewhere around 50% of children who are diagnosed.
The October 1998 issue of the Journal of Pediatrics (pages 544-551) contains an interesting study of this important issue that was conducted by Dr. Joseph Biederman and his colleagues. In this study, subjects were 85 boys who were diagnosed with ADHD when in elementary school and who continued to qualify for the diagnosis in mid-adolescence. These boys were compared in terms of their social, emotional, and school functioning with 65 boys of comparable age and background who did not have ADHD.
The authors were interested in learning about the degree to which the functioning of boys with ADHD could be considered "normalized" even though their primary ADHD symptoms of inattention and hyperactivity/impulsivity had persisted. In their study, a child's functioning was considered "normalized" if it was at least as good as children above the bottom 5% of the non-ADHD group. In other words, if a boy with persistent ADHD was doing better than children in the bottom 5% of the non-ADHD group in a particular domain, their functioning in that domain was considered to be "normalized".
Using this somewhat liberal definition (a child would be considered "normalized" if they were still doing worse than 90% of the non-ADHD, 20% of boys with persistent ADHD were found to be doing poorly in all 3 domains (i.e. scores that fell in the bottom 5% of the non-ADHD group), 60% were doing poorly in at least one area, and 20% were in the "normal range" in all 3 areas.
What factors appeared to best differentiate the boys with persistent ADHD who were doing better as adolescents from those that were doing worse? In general, boys from larger families, boys who had other psychiatric conditions when initially diagnosed (e.g. conduct disorder, depression), and boys who had greater problems with impulsivity when initially diagnosed were significantly less likely to show normalized functioning in each domain.
This study is important because it highlights how variable the outcomes can be for children with ADHD, even among boys whose primary ADHD symptoms are persistent. For parents, the results underscore the importance of attending to the behavioral and emotional difficulties that may often accompany ADHD in order to promote the successful long term development of children with this condition. In my opinion, one of the important ongoing limitation in the treatment that many children with ADHD receive is that these co-occurring conditions are often not adequately evaluated or addressed. If you have questions or concerns about whether the scope of your child's treatment is appropriate, please make certain to discuss these concerns with your child's health care provider.
THE RISK OF TREATMENT VS. NONTREATMENT
This is a very important paper that was presented by Dr. Jan Loney from the University of Iowa at the recent NIH Consensus Conference on ADHD. (See the prior issue of ADHD RESEARCH UPDATE for a summary of the draft statement issued by the consensus panel).
Dr. Loney focused on several major issues in his presentation, all of which are generally of great interest to parents and professionals. These issues were:
* children's attitudes towards taking medication;
* the relationship between the early use of medication and the later use of illicit substances;
* the relationship between early medication use and adult psychiatric diagnoses;
The data for Dr. Loney's presentation on substance use in medicated and unmedicated children with ADHD is based on a study of 219 Caucasian boys with ADHD who were born between 1954-1968, referred for outpatient evaluation and treatment, and then followed up as young adults between the ages of 21 and 23. All boys were treated by physicians in the community. One hundred and eighty two of the boys received a trial of stimulant medication, and 84% of these continued on medication for at least one year. For these boys, the average daily maintenance dose was 32 mg. of methylphenidate (i.e. the generic form of Ritalin). Thirty-seven of the boys never received medication, generally because of their parents' preferences. All these subjects were from Iowa.
At the time of follow up, which as noted above occurred when the boys were between 21-23, subjects were interviewed about their attitudes towards, exposure to, and involvement with a wide variety of substances. Information about attitudes towards taking medication and adult psychiatric diagnoses was also collected at this time.
Attitudes towards medication
The majority of young men who had received medication reported that they had disliked taking their medication (62%), avoided taking it (67%), and considered it a nuisance (68%). A large percentage reported that they had felt embarrassed about taking medication (42%) and/or were teased about it (28%).
At the same time, a majority also described positive effects of the medicine on their behavior (approximately 60%), and about two thirds felt that, in retrospect, taking medication had been a good, or partly good, thing for them.
In regards to the possible abuse of stimulant medication, only 17% reported ever having taken more than their prescribed amount, and about half of those did so before an important test or athletic contest (suggesting they believed the medication would help them perform better). Although 15% reported that someone had wanted pills from them at least once, fewer than 3% reported ever taking their medication to feel good or get "high". In regards to their beliefs about how taking medication to treat ADHD influenced their interest in trying other medications or drugs, 10% reported that it made them more likely to try other substances, about 30% said it made them less likely to try other substances, and about 60% said there was no effect one way or the other.
Relationship between early use of medication and Exposure to and Involvement with other Substances
The young adults were asked about their exposure to and use of a variety of illicit substances including: alcohol, illegal barbiturates, marijuana, cocaine, heroin, LSD, airplane glue, opiates, illegal stimulants, and tobacco.
For the first 6 items on the list above, there was no significant association between having taken stimulant medication in childhood and either exposure to or use of any substance. In other words, boys who had been treated with stimulant medication were no more or less likely than other boys to be involved in any way with any of these substances.
Boys who had been medicated were somewhat less likely than non- medicated boys to later try illegal stimulants, and were also less likely to get involved with glue sniffing and opiate use. Medicated boys also tended to be less likely to use tobacco as young adults. Overall, therefore, the use of stimulant medication in childhood to treat ADHD tended to be associated with less use of illicit substances later on.
Relationship between Early Medication Use and Adult Psychiatric Diagnoses
At the time of follow-up, boys who had been treated with medication were less likely than the non-medication boys to be diagnosed with either antisocial personality disorder or alcoholism. Conclusions Although this is not a perfect study - none is - it does provide the most comprehensive look to date at the association between stimulant medication treatment in childhood and substance use in young adulthood. Overall, the data suggest that medication is unlikely to promote the development of later substance abuse. In fact, it appears that the opposite is more likely to be true.
Another important result from this study is the retrospective accounts of how participants had felt about taking medication as children. Recall that although most felt that it was helpful to them, a majority disliked having to take medication and many felt embarrassed about having to do so. It is certainly unfortunate that many children experience this distress and this becomes especially problematic when it results in a child or teen refusing to take medication that may still be providing important benefits.
In my experience, one of the important reasons for these negative feelings is that in many cases, an inadequate job is done of introducing the idea of medication to the child or adolescent. Many children and teens I have seen have been taking medication for extended periods - often years - without any clear understanding of exactly why they are taking it and what benefits it is providing to them. This is a very unfortunate situation and inevitably generates the kind of resentment and negative feelings about medication that were reported in this study.
If your child is or will be taking medication, it is thus quite important to be certain that he or she is provided with an thorough and age appropriate explanation for why this is being recommended. By enlisting the child's cooperation and support for this form of treatment early on, many protests and negative feelings down the road may be avoided.
VARIATIONS IN THE TREATMENT RECEIVED BY CHILDREN WITH ADHD
What type of treatment do children with ADHD typically receive in the US and how does this differ according to the type of provider consulted for treatment? These interesting and important questions were addressed in an article that appeared the September, 1998 issue of the Journal of the American Academy of Child and Adolescent Psychiatry (pages 968-976).
The authors of this study began by identifying all children from within the population of second through fourth grade special education students in a particular school district who could be diagnosed as having ADHD. (As the authors point out, one cannot assume that results from this particular locale would also be found in other regions of the country, but their results are nonetheless instructive. It is also true, that the population of special education students with ADHD may not be representative of the general population of students with ADHD. Once again, however, I think the results from this sample are still quite instructive.)
After identifying the children who had ADHD, the authors interviewed the children's parents to learn about the treatment for ADHD that their child had received. Here is an overview of the major findings:
* 29% had received no care from any type of provider during the prior year;
* Of those receiving care in the prior year, 75% received treatment from a primary care provider, who was almost always a pediatrician. Over 2/3s of those children treated by a primary care physician did not any contact with a mental health specialist.
* 26% of children were treated solely by mental health specialists generally a child psychiatrist. Children treated by mental health specialists had higher levels of impairment than those treated exclusively by primary care physicians and were more likely to have an additional diagnosis besides ADHD.
* 24% of children were treated jointly by both a primary care physician and a mental health specialist.
Before moving on to highlight other aspects of the results, several points about the data above need to be made. First, it is striking that almost 1/3 of children with ADHD in this sample received absolutely no treatment of any kind during the prior year. Unfortunately, information about why no treatment was provided to these children is not presented. Second, it is striking that over 2/3 of children who were treated by a primary care provider had absolutely no contact with a mental health specialist during this period. This may reflect an important deficit in the care these children received, since primary care providers would be less likely to provide the kind of behavioral parent training and/or child behavior therapy that is often an important and necessary component of a child's treatment.
In regards to the general characteristics of the treatment that children received, here is a overview of what the authors found:
* For children treated solely by a primary care provider, the average total amount of contact with the provider during the past year was only 2.3 hours (it is hard to imagine that this could really be adequate). This compares to an average contact time of over 17 hours for those children treated by mental health specialists.
* Only 43% of primary care providers and only 52% of mental health specialists established any contact with the child's school. This raises serious concerns about the care that many children received, as the direct monitoring of school behavior is widely recognized to be an important part of effective treatment for ADHD. In fact, this is stipulated in the practice guidelines for ADHD that were recently published by the American Academy of Child and Adolescent Psychiatry. (By the way, this is an area where the ADHD Monitoring System that you received can be so helpful as using it will provide you with the regular feedback from your child's teacher that is needed to assess the ongoing effectiveness of the treatment your child is receiving.)
What this means, of course, is that many children were taking medication without the prescribing physician obtaining any direct feedback from the child's school about how well the child's symptoms were being managed. As a result, it is virtually certain that many children were taking medication who were not deriving any significant benefit from it any many were being maintained on a less than optimal dose. Results of a large scale intervention study that I hope to discuss in the near future (published results are not yet available) seem to clearly indicate that carefully monitoring medication effectiveness makes a critically important difference in the success of this treatment. The absence of such monitoring is thus a significant shortcoming in the treatment that many children are receiving.
* Only 2% of children treated by primary care providers received any type of psychosocial therapy, which include such empirically validated treatments behavioral parent training and child behavior therapy.
* Only 25% of the children received multimodal therapy, which includes a combination of medication treatment, school contact, and psychosocial interventions. Although the benefits of multimodal therapy vs. medication alone remains an important focus of current research, it is generally considered to be an important treatment approach with many ADHD children. In this sample, however, only a minority of children were receiving it. As expected, children treated by a mental health specialist were more likely to receive this combination of treatments than those seen by primary care providers alone.
As noted above, there is no way to know the extent to which the findings from this small segment of the population is reflective of the type of care that children in this country with ADHD generally receive. I must say, however, that this is not inconsistent with what seems to be the case in communities that I have practiced in. Overall, the results are pretty discouraging in that they strongly suggest the following:
* Many children with ADHD are receiving no treatment at all;
* Of those receiving treatment, basic elements of what would be considered to be adequate care (i.e. contact by the provider with the child's school and providing parents with instruction in specialized behavior management strategies) are often missing.
Although there remains much to be learned about how to most effectively promote the long term success of children with ADHD, much of what has already been learned is apparently not being routinely incorporated into the care that children are receiving.
Please do not interpret these results as indicating that primary care physicians can not provide adequate care for children with ADHD. I have been fortunate to personally work with a number of outstanding pediatricians and family doctors who did an absolutely first rate job of this. What the data show, however, is that there are many times when this may not happen. Also, as discussed above, there were many children seen by mental health specialists who were also not making any regular contact with children's schools or providing any type of behavioral intervention as part of the child's treatment. This is why it is important for parents to be vigilant in making sure that their child is receiving the different components of effective treatment that he or she may require.
- Reader Questions -
"My child had side effects to Ritalin. What should I do?"
There are several things to consider here. First, it is worth mentioning that in some cases, what appear to be side effects from medication may actually be placebo effects. In many studies where children have received both medication and placebo, it has been found that complaints about apparent side effects are almost as likely to occur during a placebo week as during a medication week. Thus, it is quite possible that what appear to be medication related adverse effects, really are not and would dissipate with time. This would be an important possibility to discuss with your child's doctor.
Second, if the adverse reactions you observed really are medication related, than you may want to consider a different medication. In my own work, I have seen many times that a child may have adverse reactions to Ritalin but then may do quite well on another stimulant and not show any of the same negative effects. Just because the first medication tried may not be tolerated well by your child, does not at all mean that he would not do very well on another medication. There is no way to know this without systematically trying different possibilities. Again, this would be important to discuss with your child's doctor. Good luck.
"The medication my child is on seems to be helping at school but we are having real problems with her behavior at home. Any suggestions?"
There are several things to consider here. First, if your child is taking a regular stimulant medication such as Ritalin, it is quite likely that the medication has worn off by the end of the school day. This would be the case even if your child is getting a second dose during the day. As a result, any beneficial effects the medication is having would be gone by the time your child gets home.
Here are some different options. First, if you haven't already done this, it would be very helpful to consult with a child psychologist to learn about specific behavior management strategies that can help encourage better behavior from your child. Behavioral treatment can be a critically important part of an overall treatment approach to many children with ADHD. As noted above, however, this is often not discussed by primary care providers. Try to find an experienced child psychologist in your area to speak with. I have an overview of the general principles of behavioral treatment on my web site that may be helpful to review.
The other thing to consider would be an additional dose of medication in the late afternoon. In the large multi-site treatment study of ADHD mentioned above, children in the medication only group received 3 doses a day, 7 days a week. Dose was carefully adjusted to be maximally effective and they were monitored on a regular basis. Preliminary results indicate that this approach was very successful. (It is important to note that parents of these children also received plenty of education about ADHD, guidance, and regular support). It certainly appears that many children can tolerate and do quite well on this type of medication schedule, and you may also wish to consider this possibility with your child's physician.
Individual Consultation
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That's all for this month...
I hope you enjoyed this issue of ADHD RESEARCH UPDATE. As always, feel free to share information contained in this newsletter with others you know who may be interested in it. If these folks would like to receive the newsletter on a regular basis, please pass along my e-mail address (addhelp@mindspring.com) so they can get in touch with me about subscribing.
See you next month.
Sincerely,
David Rabiner, PhD
Licensed Psychologistcopyright 1999 ADHD RESEARCH UPDATE