Part 2 of Our Award-Winning Series “Our Children’s Health”
Just one word your child repeats could indicate big trouble—perhaps years of future struggle.
Most likely you know a child who often asks, “What?” But if you notice that they ask it consistently or in what you might think are inappropriate situations (like close one-on-one discussion), your child needs to be checked. The child may have a disorder that is suddenly gaining a lot of attention—central auditory processing disorder (CAPD), more popularly known as APD. If the condition is caught in time, the child can be helped. If not, they could have a world of problems ahead—academic, social, emotional and physical.
APD is a condition in which patients have difficulty cognitively processing sounds, language and/or phonemes (any distinguishing unit of sound, e.g., “b” and “g” in “bag”). Judith W. Paton, an audiologist from San Mateo, Calif., describes APD as “a physical hearing impairment, but one that does not show up as a hearing loss on routine screenings or an audiogram. Instead, it affects the hearing system ‘beyond the ear,’ whose job it is to separate a meaningful message.”
An APD child can have any combination of the problems listed in the table, “What To Look For” on this page. While some APD children develop compensatory skills enabling them to thrive in school, it is still not easy for them. Compensatory skills take up working memory (think of RAM in a computer), and working memory then suffers. The disorder is a hindrance to a child’s development, and in school it can lead to misunderstandings with authority, social ostracism and failure, if left unchecked. Although they have normal hearing and intelligence, APD children often do poorly on tests.
But first things first: The child must have their hearing tested. Children with APD ask, “What?”—even with perfect hearing.
The Meaning of Things
“Look out the door.”
“Look out, the door!”
These four words could be misinterpreted by a child (or adult) with APD in several ways. When heard, the phrase has different meanings and implications. It could be everything from a polite command to an urgent imperative. Those with APD don’t always “hear” the comma or the exclamation point. Dr. Jay Lucker, National Coalition on Auditory Processing Disorders (NCAPD), Inc. director and co-founder, uses this example in seminars to demonstrate that, while a person with proper processing can distinguish the different meanings from the same four words, a person with APD might not be able to distinguish the stresses, pauses, nuances—the very auditory indicators that determine the tone and meaning of the sentence.
Dr. Lucker, an audiologist and speech-language pathologist, says that 5 percent of children suffer from APD, but believes there are more who go undiagnosed.
“More than half of all children with speech-language impairments and with learning disabilities have underlying auditory processing deficits in some areas of APD.”
According to Lucker, there are many manifestations of APD. He describes three scenarios: In the first, a patient looks at audiovisual stimuli and has “no automatic connection to sound.” For example, the patient might only process the “kuh” phoneme for the letter “c,” causing her great difficulty when confronted with the word “circus” in print. In the second scenario, she does not hear phonemic differences when spoken, which would affect her understanding of commands such as “Look out, the door!” In the third scenario, she has trouble paying attention to and remembering information presented orally. Often, this is because she cannot distinguish speech from background noise, such as air conditioning, background voices, the whirring of machinery, outdoor noises, the gentle hum of everyday life.
Linda, 12, of Huntington, was given an APD test where competing sentences were played in each ear. One voice, in the left ear, for example, would say, “My mother is a good cook.” The voice in the right ear says, “Your brother is a tall boy.”
Linda would repeat, “My mother is a really tall boy,” laughing—but frustrated, knowing it was wrong.
Kathleen Page, a pediatric audiologist and owner of Hearing Education, Assessment & Related Services (H.E.A.R.S.) in Smithown, who is Linda’s audiologist, notices that patients with APD tend to exhibit the following problems in school:
• difficulty comprehending written or spoken language
• problems with following directions
• trouble taking notes
• problems with reading comprehension
• trouble understanding verbal math problems
• difficulty spelling and/or writing
• trouble recalling a story in proper sequence.
Add to this the problems that occur outside the academic world:
• inability to communicate properly with peers and siblings, leading to social isolation
• misunderstanding nuances in people’s speech
• difficulty comprehending movies, TV and books
• anxiety, which might lead to illnesses such as irritable bowel syndrome or panic attacks
Priscilla L. Vail, author of Words Fail Me: How Language Works and What Happens When It Doesn’t, describes in detail how the nuances of language can greatly affect a child’s social status. “Popularity,” she says, “hangs by a linguistic thread.”
Diagnosis of APD can be problematic, as it is sometimes confused with attention-deficit diorder, or ADD—a patient can have both ADD and APD. Audiologist Page says that one way to get around this obstacle is to first rule out ADD: “If [medicines like] Straterra or Adderal make the problem worse, look for APD.”
NCAPD’s Lucker maintains that “there are [so] many confounding variables involved in our present auditory processing measures, including most standardized and accepted measures, that it is difficult for most people to extract from the test findings what are the specific auditory processing deficits faced by a child.”
Dr. Jack Katz, an audiologist and member of the Advisory Board for the National Association of Future Doctors of Audiology (NAFDA), however, says diagnosing APD is a cinch.
“In one hour, most audiologists who use the Buffalo model [test] can not only say if there is or is not APD,” he says, “but also what categories of APD are present and what can be done to help the person in a relatively brief period of time.”
“How many audiologists know the model?” Lucker asks in response. Unless they are specifically looking for APD, many audiologists either say that the patient has a learning problem and recommend him to a psychologist, or say nothing is wrong with the patient, according to Lucker.
Even if many audiologists do not diagnose APD, primary care physicians such as developmental pediatricians and developmental psychologists should be able to suspect it and give referrals to audiologists familiar with APD, according to Page.
Though proper diagnosis can begin earlier, adds Page, the problems can still be related to the brain’s ongoing development, which ends between 15 and 16 years of age, with some of the symptoms naturally correcting themselves. Most experts, along with parents of APD kids, insist that the earlier the child is diagnosed, the better: Do not wait until academic and social problems begin spiraling. While hints of the disorder can appear as early as in preschool, most audiologists recommend testing for APD between ages 7 and 8. Many parents of APD kids say that is way too late. What can be done after diagnosis? “There is no one-size-fits-all approach to coping with APD,” says audiologist Dr. Teri James Bellis, chairperson of both the Department of Communication Disorders at the University of South Dakota and the American Speech-Language-Hearing Association (ASHA) Working Group on ADP. Her book When the Brain Can’t Hear has entire chapters devoted to coping strategies for various types of APD.
“It requires development of an individualized, deficit-specific approach to management and treatment that can only be developed via appropriate diagnosis,” says Bellis.
Bellis herself has APD, which developed several years ago after suffering head trauma in a car accident. (She also has a theory that men naturally develop adult-onset APD, which would explain why so many wives complain that their husbands “just don’t listen.”)
How Did It Happen?
First identified in 1954, the disorder was originally called “auditory perceptual disorder.” As with many types of neurological disorders, including autism and ADD, no one knows what causes APD, but there are several theories. One of the most commonly held is that many of the kids with APD had chronic childhood ear infections. Many had language development delays or disruptions. Some experts believe the cause is environmental, such as lead poisoning. Others claim APD is caused by vaccinations (a popular autism theory). Some experts, like California audiologist Paton, believe it’s hereditary, also pointing out that sometimes these kids have siblings or other close relatives with learning disabilities. As with Dr. Bellis, there is medical evidence that head trauma also causes APD.
As the disorder becomes more and more talked about, parents are beginning to speak with each other, mostly on APD listserves, about similarities in their kids: OCD, ADD, early hospitalizations, a cousin with autism (some experts have suggested that APD is part of the autism spectrum, a theory Dr. Lucker strongly rejects). Mothers and fathers are asking each other about things they would never have thought about before—a droopy right eye, café-au-lait birthmark, low height percentage, snoring, tremors, allergies, short-term memory deficit with long-term memory acuity, and more.
How To Fix It
Appropriate treatments may include:
• coping strategies such as visual learning and looking for visual cues (body language, lip reading)
• an FM system for auditory training (teachers use a small microphone to transmit directly to the student’s headphones or hearing aid)
• speech therapy with an APD expert
• alternate (quiet) testing sites with extended times
• preferred seating
• less homework, so the student can learn the work as opposed to having hours of fruitless study
• all school/class announcements, homework and test instructions fully repeated and explained; depending on the school district, offer a resource room where the child is provided with extra help
• psychological and/or occupational therapy services, often offered to repair social problems and teach the subtleties of child peer-to-peer speech and social interaction
In almost every case, a transdisciplinary approach—involving, for instance, a psychologist, speech therapist and audiologist—is necessary.
Speech is often the manifestation of a child’s APD problems: sometimes cluttered, convoluted, long-winded and dotted with spoonerisms, or slips of the tongue (“Can I show you another seat?” becomes “Can I sew you another sheet?”); or, stories with no particular beginning, middle and end. Unfortunately, processing is not what school speech therapists look for, or even think about, for the most part; they are most concerned with articulation. So APD is often misdiagnosed and goes unchecked for years, with disastrous results. The irony is that while it is the audiologist who determines APD, it is the speech therapist who is supposed to help correct it. Audiologists like Dr. Melanie Herzfeld (who practices in Woodbury and was the first to suggest that Linda might have APD) say that parents who suspect APD, or are completely confounded by the idiosyncracies in their child’s speech, hearing or processing, should insist that their school district provide an audiologist to test for APD.
“Districts need to be educated regarding the value of having an audiologist perform tests and when to refer a child for APD testing,” maintains Herzfeld. Another local audiologist, who practices in Queens and asked not to be named, was more adamant: “Not testing the child is educational malpractice.”
“SLPs [speech-language pathologists], psychologists, teachers and parents are most critical, in my experience,” says Katz.
“Most of the transdisciplinary team is found in the school system,” adds Bellis. “Therefore, families should use those resources first and foremost, as they are free. Also, many university clinics may provide fee-based or no-cost services.”
Unfortunately, even the road to recovery is not an easy route. Some schools do not provide the adequate resources necessary for an optimal interdisciplinary approach. Linda, mentioned above, for example, was on the honor roll. But that achievement took her four hours of studying each night as well as a continuous struggle, trying to figure out what a teacher really meant or what an assignment was really supposed to be. Because she did well in school, her district refused to provide services—until Linda began spiraling down academically, mentally, physically and socially. Her parents, now active in APD matters, have spoken to many parents across the country whose children have had identical experiences: being misdiagnosed by school speech therapists and denied services by school districts, and falling down in all aspects of their lives. Although Linda wasn’t diagnosed with APD until this year, many other children are being diagnosed earlier, thanks to APD’s emergence from the ADD spectrum.
Also, many adults are looking into getting tested for APD. Michael Greenberg, 52, a letter carrier from Plainview, went to an audiologist to have his hearing tested, after spending a lifetime of difficulty hearing and following conversations. He was tested and his hearing was fine. The audiologist then tested him for APD, “the ones which children take,” Greenberg jokes, and his results: APD.
“Before attention is paid to auditory processing, first we need to make sure the auditory peripheral mechanism is working,” says Dr. Herzfeld, “and that means a standard hearing test by an audiologist. Too many times failures in school can actually be linked to an undiagnosed hearing loss, so we have to rule that out first.”
As more and more people start finding out about the disorder, many will see themselves and their children as having it.
That makes sense to Herzfeld, who suggests: “While many people begin to hear these descriptions, they identify their own difficulties, but in a child who can’t develop adequate compensatory techniques, real auditory processing failure is evidenced. But when we isolate and identify these difficulties—deficits in auditory memory, auditory closure, filtering—then it needs to be examined.”
Bottom line: Kids need to be tested. That is the clarion call of all APD experts and parents of children with APD. There is also a controversial movement afoot to test all children for APD, which some professionals, including Herzfeld, call “a waste of resources.” But what everyone agrees on is that when an APD diagnosis comes in, the school needs to attend to the child immediately.
“Parents should put pressure on the schools to provide high-quality services,” says Katz. “It is very cost-effective to get so much benefit for a child, with relatively little investment in time and money.”
Self-esteem will be a necessary salve in the healing process—in order to implement the necessary coping strategies, in order to succeed in the learning exercises and in order to move on. Or, in Lucker’s words, “I see a future in which children with auditory processing deficits can succeed without struggling, without giving up and without feeling, ‘I am stupid.’”
Trouble Signs: An APD Checklist
• Often asks, “What?” or “Huh?”
• Talks or likes TV louder than normal
• Often needs remarks repeated
• Difficulty sounding out words
• “Ignores” people, especially if engrossed
• Unusually sensitive to sounds
• Asks many extra-informational questions
• Confuses similar-sounding words
• Difficulty following directions in a series
• Speech developed late or unclearly
• Poor communicator
• Memorizes poorly
• Hears better when watching a speaker
• Problems with rapid speech
—Judith W. Paton, audiologist
What To Look For
Children who have auditory processing deficits have problems with:
• auditory discrimination—an inability to tune out background noise and understand words in unfavorable acoustical settings
• auditory memory, which might be deficient, causing difficulty in remembering what was heard
• inferring (understanding sarcasm or irony); they might take things literally
• incomplete sentences, which might be hard to comprehend
• following directions, comprehending abstract information, keeping organized
• conversations, or movie and TV plotlines, that are difficult to follow
• behavior, which might mimic a child with attention deficit disorder (ADD) or attention deficit/hyperactivity disorder (ADHD)
• speech, which can be severely impaired or just plain quirky. APD affects their expressive and receptive language
For more information on APD
Alphabet Kids by Robbie Woliver (Jessica Kingsley Publishers)
Kathleen Page (H.E.A.R.S.): 631-360-4327 www.hearsny.com
Dr. Melanie Herzfeld: 516-682-8288
Dr. Jay Lucker: www.nacpd.org
Parent to Parent of New York State (advocacy group): 631-493-1716
American Speech-Hearing-Language Association (ASHA) www.asha.org
American Academy of Audiology (AAA) www.audiology.org