I'm not a stranger to research or behavioral conditions based in physiology. I am the mother of a 9 year old child with an auditory processing disorder, and I have a Ph.D. in Physiological Psychology.
As a mom, I wanted to educate myself to better understand my 9 year old son's auditory processing disorder, to better provide him with helpful treatments and activities. However, prior to arriving at his diagnosis, one of the steps along the way was to "rule out" attention deficit disorder/attention deficit hyperactivity disorder. The term "rule out" is common in medicine. It is used by physicians and others while trying to establish a differential diagnosis while eliminating other possibilities. Hence, things to be "ruled out" are often similar to, or indeed are the actual diagnosis, but are as of yet undetermined.
Our experience while "ruling out" took us through an enormous amount of information regarding the prevalence, diagnosis and treatment of neuropsychological conditions, many of which potentially cause us to medicate children who are physically and emotionally developing. This is a significant issue for all parents, professionals, and children too.
Many diagnostic terms and acronyms used in 2005, which describe specific patterns of behavior, were unheard of twenty or thirty years ago. Of course, that doesn't mean these problems didn't exist previously, maybe they did...but these terms were strangers to most moms, dads, teachers, and professionals!
I believe decisions regarding the management and treatment of children should be based on solid scientific evidence, good clinical judgment and excellent parenting skills, none of which can be assumed.
- Auditory Processing Disorders (APD) is a term used to describe what happens when your brain recognizes and interprets sound. It has been said that auditory processing is "What you do with what you hear." The "disorder" part of APD indicates something is adversely affecting the processing of sound. APD is typically more apparent and more of a problem in noisy environments or while listening to complex or difficult information. APD is also referred to as central auditory processing disorders (CAPD).
Symptoms of APD:
Children with APD often have difficulty paying attention to and remembering information presented to them verbally. Children with APD often have difficulty executing multi-step directions, they have poor listening skills and may need more time to process information. Children with APD may have low academic performance and may have behavior problems. They may demonstrate language difficulties and they often have difficulty with reading, comprehension, spelling, and vocabulary (adapted from www.nidcd.nih.gov/health/voice/auditory.asp).
- Attention Deficit Disorder (ADD), Attention Deficit Hyperactivity Disorder (ADHD), and ADD/ADHD, and Attention Deficit/Hyperactivity Disorder (AD/HD).
While many people use these diagnostic terms rather loosely, it is important to note that there are in fact, specific diagnostic criteria and guidelines for making a diagnosis. ADD is the more general term, referring to Attention Deficit Disorder. ADD can be present with or without hyperactivity, hence the terms ADHD ADD/ADHD and AD/HD.
It has been estimated that about 5 percent of the U.S. population (children and adults) has AD/HD.
Symptoms of AD/HD behaviors include:
- distractibility (poor sustained attention to tasks)
- impulsivity (impaired impulse control and delay of gratification)
- hyperactivity (excessive activity and physical restlessness)
Of course, at one time or another, virtually everyone experiences some of these behaviors. However, specific diagnostic criteria (below) identifies AD/HD from "normal" distractibility and/or occasional impulsive behavior of childhood (adapted from www.add.org/).
Therefore, to be diagnosed with AD/HD, symptomatic behaviors must be present prior to age 7 years and have lasted more than 6 months. The behaviors must create a significant handicap in at least two areas of a person's life, such as school, home, work, or social settings. We tend to associate hyperactivity with attention deficits, but they are not always present in tandem.
- distractibility (poor sustained attention to tasks)
Parents and professionals in the USA (and elsewhere) are wondering about what seems to be a vast increase in the prevalence of AD/HD -- especially when compared to a few decades ago. Many of us are asking...what is happening?
Any parent who has visited a 3rd or 4th grade classroom in the USA can attest to the fact that quite often, one or two kids will have great difficulty sitting still, remaining in their seat, controlling themselves and paying attention.
When I was growing up, we thought of those same kids as the "bad" kids - the ones who wouldn't behave. However, "AD/HD" is now used to describe those kids; kids that demonstrate inattention, impulsivity, with or without hyperactivity. Those kids typically have difficulty paying attention and difficulty organizing themselves, they are forgetful and they lose things. Those same kids may have difficulty "inhibiting" themselves verbally; they interrupt people and they can't wait their turn to speak.
Is AD/HD Real?
Is AD/HD is a made-up disorder? Was it "morphed" together by pharmaceutical companies to sell their products? Was AD/HD created by psychiatrists, social workers and psychologists to enhance their business model? Was ADD/ADHD created by teachers and school systems that prefer passive, well-behaved girls, rather than hyper-active boys?
Along with increased awareness and the never-ending presence of diagnostic terms and acronyms in modern society, there has been a significant growth in the quantity of medications available to treat behaviors. Ads in magazines, commercials on TV, as well as talk show topics on radio and TV, and voluminous content on the Internet imply that medication X has specific advantages over medication Y. The message is clear...We should be compelled to ask our doctor to write a prescription for medication X, perhaps based on self-diagnosis, more so than a medical or psychological basis. However, perhaps our news and information sources have created a mountain, where a manageable mound previously existed?
Effective direct-to-consumer marketing and the concomitant awareness of the multitude of products, their names, their impact, their side effects etc, may be detrimental. Perhaps the plethora of AD/HD information indicates our society has a problem which we are perpetuating by naming, self diagnosing and by having treatments readily available? I am not arguing that AD/HD is not "real." I believe it is real.
Based on my review of several studies, there is no credible evidence of widespread over-diagnosis of ADHD (Goldman et al, 1998). While in a minority of cases, children are treated who do not meet all of the diagnostic criteria, it is more often the case that children with attention disorders go undiagnosed and untreated. In some cases, children are misdiagnosed with ADD/ADHD when, in fact, they have another type of disorder. These findings may reflect a failure of proper, comprehensive evaluation and diagnosis, rather than a failure of the diagnostic criteria, which are clear and validated by research (Angold & Costello, 1998).
Professional Status Quo: Differences due to differences
Children (and adults) with behavioral and academic problems are often seen and diagnosed by a large variety of professionals with different funds of knowledge and highly variable professional training; school psychologists, teachers, psychiatric social workers, neuropsychologists, social workers, psychiatrists, psychologists, pediatricians, neurologists, audiologists, speech-language pathologists, family physicians and many others, potentially participate in the diagnosis and treatment of AD/HD.
As professionals vary, so too, does the diagnosis, as well as recommendations regarding treatment and management options and ideas. Professionals see the patient based on their own terms, training and knowledge. Two professionals with entirely different backgrounds may see the same patient and arrive at two different diagnosis categories, with two very different treatment alternatives.
My son's teacher held a conference with us and the school psychologist to express her observations and concerns about my son's lack of attention. She suggested we bring him to our pediatrician for medication. Because of my training as a scientist, I brought him to a neuropsychologist for a complete neuropsychological evaluation. It is not uncommon to wait 3 to 6 months to get an appointment with a neuropsychologist for the 8 to 10 hour evaluation, and then one might wait 3 months to get the final report. These evaluations are expensive, ranging from $1000 to $2000, and unfortunately, health insurance typically does not pay for them.
Because of financial issues and time delays associated with a thorough and appropriate diagnosis, sometimes well-intentioned physicians prescribe medications, without a thorough or appropriate evaluation. Sometimes their efforts are even greeted with enthusiasm by the parents because "treatment" has started quickly.
In our case, the neuropsych evaluation showed our son did not meet the well accepted Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV) criteria for ADD/ADHD.
However, my son had higher than average scores on anxiety and problems with phoneme awareness, auditory memory and reading comprehension. The neuropsychologist recommended a speech and language evaluation. The speech language pathologist (SLP) administered a variety of formal and informal measures to assess oral and written language, including; the Test of Auditory Perceptual Skills-R, Oral and Written Language Scales, The Language Processing Test: Similarities and Differences subtests, The Listening Test, Phono-Graphix Screening Test, Woodcock-Johnson Word Attach Test, and others.
The school's hearing test revealed normal hearing, so we did not pursue further audiology testing. Nonetheless, many audiologists do screen and test for auditory processing disorders, but in our situation, that testing was done by the SLP.
The conclusion was that Greg had an Auditory Processing Disorder.
The speech pathologist recommended a variety of programs to improve language processing skills. We completed the Fast ForWord program - and saw a very impressive change in vocabulary and expressive language. Next, we completed a Phono-Graphix program which resulted in a significant improvement in decoding new words. After two years, we are still working on developing specific study skills to support his poor auditory memory and will probably complete Nanci Bell's Visualizing and Verbalizing program.
While all of these interventions have produced beneficial results, probably by altering brain pathways, I expect that auditory memory and subtle aspects of language processing will forever be a weakness for my son. The good news is, he can learn strategies to compensate for his weaknesses.
Children also suffer "secondary consequences" from AD/HD. That is, their difficulty in school and in social situations can lead to feelings of frustration, discouragement and anxiety that can further exacerbate their academic and social difficulties.
Teachers and APD:
The most frustrating aspect of this experience has been getting teachers "on board." The crucial accommodations he needs are visual supports for verbal directions and he also needs comprehension checks. Every September, I meet with his teachers and explain his APD and learning needs. I provide them with his test results and recommendations, and yet, the first semester report card is always riddled with comments about "having difficulty following directions".
One teacher almost refused to believe he had APD and kept asking me "Are you sure he doesn't have ADD? He doesn't pay attention!" I responded, "Here is the file, here is the testing - he does not have ADD. He stops paying attention because he doesn't understand what you're saying."
To say it is frustrating being the parent of an APD child is an understatement. However, my frustration is relatively minor, particularly when compared to the frustration of being the one with APD.
Diagnostic Criteria for ADHD:
Various professional organizations have set forth guidelines for the diagnosis and treatment of ADD/ADHD, but not all practitioners adhere to these guidelines. Therefore, it is incumbent upon parents to EDUCATE themselves. When a child is accurately diagnosed with AD/HD and receives appropriate and timely treatment, the improvement in social and school life can be quite dramatic. However, if a child is misdiagnosed, the consequences can be serious, too.
The DSM-IV is the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (as noted above). The DSM-IV is published by the American Psychiatric Association. According to the DSM-IV, to arrive at the diagnosis, the child must have a minimum of six symptoms of either inattention (for a diagnosis of ADD) or inattention-hyperactivity (for a diagnosis of ADHD) that have persisted for at least six months.
In addition, the symptoms must be maladaptive - that is, interfering with normal school and social activities. The symptoms are described, i.e., standards are set to minimize subjective errors, while achieving a reliable and accurate diagnosis.
According to the DSM-IV some common symptoms of ADHD include: often fails to give close attention to details or makes careless mistakes; often has difficulty sustaining attention to tasks; often does not seem to listen when spoken to directly; often fails to follow instructions carefully and completely; losing or forgetting important things; feeling restless, often fidgeting with hands or feet, or squirming; running or climbing excessively; often talks excessively; often blurts out answers before hearing the whole question; often has difficulty awaiting turn.
Quantifying Behavioral Observations:
Behavioral observation provides much of the background and supporting information for the diagnosis. Observation evidence is obtained directly from parents, caregivers and teachers. Data should be collected in the most objective manner possible, i.e. using rating scales. Rating scales such as the Connors Rating Scale, Burke's Behavioral Rating Scale, the SNAP-IV Rating Scale and ADHD Index are common and useful. Once evidence has been quantified, it can be used to determine whether the behavior meets the DSM-IV criteria (above).
Most professionals and educators recommend a complete physical exam by a licensed physician to rule out possible neurologic, hormonal, physical or anatomic disorders which may contribute to, maintain or initiate abnormal behaviors. I agree, and I also suggest all children suspected of having behavioral disorders should receive a neuropsych evaluation to further assess cognitive, emotional and psychological function.
Stimulants used to treat AD/HD offer some therapeutic benefits, and importantly, they are controlled substances -- and they carry a potential for abuse. However, they are not narcotics like morphine and heroin. Rejecting AD/HD medications because they are controlled substances is not (to me) a good reason to reject them. In terms of future substance abuse, there is data shows that children whose AD/HD is treated with stimulants are less likely (than untreated cases) to have substance abuse problems (Barkley et al, 2003).
The most common medicines to treat AD/HD are part of a class of agents known as psychomotor stimulants. These are methylphenidate and amphetamine, and again, they are controlled substances. Brand names for methylphenidate products include Ritalin, Concerta, Focalin and Metadate. Brand names for amphetamine products are Dexedrine and Adderall. The most recent addition to this group is Strattera, which has a different mechanism of action. It is in the same chemical class as the antidepressants Prozac and Zoloft. Unlike the amphetamine and methylphenidate products, it is not a controlled substance.
Side effects of the stimulants include loss of appetite and sleeping difficulties. Physicians will "tweak" the dosing of these agents, which have varying durations of action, to maximize effects during the school day, and wear off in the evening. Most parents report improvement in attention, focus and organization after their child has been treated with medication.
Many experts recommend behavioral and other support systems in addition to medication. These may include social skills training and study/organizational skills tutoring. A large, multi-center study conducted by NIMH indicated that children do best when they receive behavioral interventions in addition to medication (Richters et al, 1995).
Finally, while there is sufficient evidence to show that AD/HD is a real, biological disorder (Bush et al, 1999; Zametkin et al, 1998), we should not ignore the impact of environmental factors on this disorder.
It seems likely (to me) that symptoms of mild AD/HD might be exacerbated by the fast paced electronic delivery of information which characterizes our middle class life style. Visual and auditory information is fed to children at a dizzying speed, and it requires them to process and respond rapidly. Compare computers, DVDs, cell phones, digital pagers and our 21st century lifestyle to the lifestyle of 100 years ago, and I believe it is apparent, demands of the human brain have vastly increased! Therefore, it seems apparent to me, that although medication can be beneficial, we should also strive to create an environment conducive to our children's learning and processing abilities and find ways to strengthen them.
As a final thought, my personal and professional observation is that the state of affairs with AD/HD is not all that different from many other disorders. In my work conducting market research in healthcare situations, I have noted that sometimes adult and geriatric patients' do not receive accurate diagnoses or optimal treatment for a variety of maladies, not just AD/HD.
Regardless of the problem, one important key to proper diagnosis and management is patient and caregiver education and advocacy. In that regard, I hope the above thoughts are useful to you, particularly as we all deal with a fragmented and frustrating health care system.
American Academy of Pediatrics (2000) Clinical Practice Guidelines: Diagnosis and Evaluation of Attention Deficit Disorder. 105(5), 1158-1170.
Angold, A., & Costello, E. J. (1993). Depressive comorbidity in children and adolescents: Empirical, theoretical, and methodological issues. American Journal of Psychiatry, 150, 1779-1791.
Barkley, R.A., Fischer, M., Smallish, L. & Fletcher, K. (2003) Does the Treatment of Attention-Deficit/Hyperactivity Disorder With Stimulants Contribute to Drug Use/Abuse? A 13-Year Prospective Study. Pediatrics, 111: 97 - 109.
Bush G, Frazier JA, Rauch SL, Seidman LJ, Whalen PJ, Jenike MA, Rosen BR, Biederman J. (1999) Anterior cingulate cortex dysfunction in attention-deficit/hyperactivity disorder revealed by fMRI and the Counting Stroop. Biol Psychiatry.;45(12):1542-52.
Goldman, L.S., Genel, M., Bezman, R.J., Slanetz, P.J.(1998) for the Council on Scientific Affairs, American Medical Association. Diagnosis and Treatment of Attention-Deficit/Hyperactivity Disorder in Children and Adolescents. JAMA, 279: 1100 - 1107.
Richters, J. E., Arnold, L. E., Jensen, P. S., Abikoff, H., Conners, C. K., Greenhill, L. L., Hechtman, L., Hinshaw, S. P., Pelham, W. E., & Swanson, J. M. (1995). NIMH collaborative multisite multimodal treatment study of children with ADHD: I. Background and rationale. Journal of the American Academy of Child and Adolescent Psychiatry, 34, 987-1000.
Zametkin A, Liotta W. (1998) The neurobiology of attention-deficit/hyperactivity disorder. J Clin Psychiatry;59:17-23.