Differential Diagnoses

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Problems that Look Like ADHD but are NOT

There are a number of conditions that look a lot like Attention Deficit Hyperactivity Disorder, but are not ADHD. Here are some of these conditions that look like ADHD, but are not:

Understanding that these other conditions can mimic ADHD is part of making a good diagnosis. "Differential Diagnoses" must be considered first before diagnosing ADHD.

Differential Diagnosis Defined

from the Wikipedia.org dictionary:

"In medicine, differential diagnosis (sometimes abbreviated DDx) is the systematic method physicians use to identify the disease causing a patient's symptoms.

"Before a medical condition can be treated, it must be identified. The physician begins by observing the patient's symptoms, examining the patient, and taking the patient's personal and family history.

"Then the physician lists the most likely causes. The physician asks questions and performs tests to eliminate possibilities until he or she is satisfied that the single most likely cause has been identified.

"Once a working diagnosis is reached, the physician prescribes a therapy. If the patient's condition does not improve, the diagnosis must be reassessed."

Each of these conditions can cause ADHD-like symptoms, such as inattention or difficulty concentrating, impulsivity or lack of self-control, motor restlessness or hyperactivity, learning problems, or memory deficits.

Unfortunately these conditions are often mis-diagnosed as ADHD, which results in ADHD as a disorder being "over-diagnosed" in society. And, more importantly, the mis-diagnosed patient is then treated by his physician and/or therapist for ADHD. This means the wrong medications and the wrong treatment plans are used, and that their condition is unlikely to improve.

Articles discussing these differential diagnoses are below for you to look over and consider.

Douglas Cowan, Psy.D., M.S. is a licensed Marriage and Family Therapist in Tehachapi, CA who has been a skillful counselor to children, teens, and adults helping them to overcome ADHD, find relief for depression or anxiety, and solve other problems in life since 1989. He served on the medical advisory board to the company that makes Attend and Extress from 1997 through 2011, and he is the Editor of the ADHD Information Library online resource. His weekly ADHD Newsletter goes out to 9,500 families. Visit his website at http://DouglasCowan.me for more information on achieving greater health, personal growth, Christ-centered spirituality, stress management, parenting skills, ADHD, working out the stresses of being a care-giver to elderly parents and also being a parent to teenagers, or finding greater meaning in retirement years, Dr. Cowan can be a valuable resource to you.

Douglas Cowan, Psy.D., MFT
27400 Oakflat Dr.
Tehachapi, CA 93561
(661) 972-5953

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Early Onset Bipolar Disorder vs ADHD

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ADHD and Bipolar Disorder

ADHD has become one of the most widely diagnosed conditions in the United States. Although there are many children who have this condition, it is sad to say that many who have been diagnosed with ADHD actually have Bipolar Disorder.

Contributed by F. Russell Crites, M.S., L.P.C., L.M.F.T., L.S.S.P.

From his very helpful book, "Bipolar or ADHD: Educational and Home Based Strategies for Bipolar Disorder, ADHD and other Co-existing Disorders." Order the book here.

With this thought in mind, it is important for parents, therapists, and educators to develop a better understanding of Bipolar Disorder as it relates to children.

Bipolar disorder has been a debilitating problem for adults for years. Children and adolescents have rarely been diagnosed with this disorder until recently.

Numerous researchers have identified that children and adolescents can indeed have Bipolar Disorder. As a result, more and more students are being given that diagnosis.

Of interest, especially in the school systems, is that ADHD should not be diagnosed until Bipolar Disorder has been ruled out.

New knowledge has made it easier to identify Bipolar Disorder, which is in itself very helpful, since bipolar students have some very specific needs that go beyond what is seen in ADHD students. However, there is still a need for ongoing education in the area of Bipolar Disorder.

Numerous studies by Geller, Miklowitz, Papolos & Papolos, CABF, the American Academy of Child and Adolescent Psychiatry and other individuals or agencies have provided information that can help us understand Bipolar Disorder as it relates to children and adolescents.

Here are some of the results of a few studies that can give needed information regarding Bipolar Disorder and children.

  • Bipolar disorder has been investigated by federally funded teams in children as young as age six.
  • Approximately 7% of children seen at psychiatric facilities meet criteria for the diagnosis of Bipolar Disorder using research standards (Carlson, G.A., 1998).
  • Based on one large scale study, 5.7% of the adolescent population had some form of Bipolar disorder (Strober, M. 1990).
  • Over 80% of children with a Bipolar Disorder will meet full criteria for attention-deficit disorder with hyperactivity, ADHD should be diagnosed only after Bipolar Disorder is ruled out.
  • Stimulants unopposed by a mood stabilizer can have an adverse effect on the bipolar condition.
  • 65% of the children in a study done by Papolos had hypomanic, manic and aggressive reactions to stimulant medications (Papolos & Papolos, 1999).
  • According to the Child & Adolescent Bipolar Foundation (CABF), 15% of U.S. children diagnosed with ADHD may actually be suffering early-onset Bipolar Disorder instead.
  • According to the American Academy of Child and Adolescent Psychiatry up to 33% of the 3.4 million children and adolescents with depression in the United States may actually be experiencing early-onset Bipolar disorder.
  • Bipolar disorder appears to be genetic. If one parent has the disorder, the risk to each child is 15-30%. If both parents have the disorder, the risk increases to 50-75%.
  • If Bipolar Disorder is caused entirely by genes, then the identical twin of someone with the illness would always develop the illness, and research has shown that this is not the case. However, if one twin has Bipolar Disorder, the other twin is more likely to develop the illness than is another sibling.
  • If the Bipolar Disorder is untreated, the suicide rate can be as high as 20%.
  • Dr. Miklowitz tailored his therapy to address the special needs of kids, including learning to understand changes in school functions and recognizing normal adolescence from pathological behavior, working at regulating sleeping, and addressing mood disturbances in other family members (Miklowitz, 2002).
  • Studies using positron emission tomography (PET), a technique that measures brain function in terms of blood flow or glucose metabolism, have found abnormal activity in specific brain regions including the prefrontal cortex, basal ganglia, and temporal lobes during manic and depressive cycles.
  • Bipolar children can have night terrors. Their dreams are filled with blood and gore.
  • In one study 43% of the study sample who had Bipolar Disorder were also hypersexual.
  • Those with Bipolar Disorder who present with a mixed state take the longest to recover, and are the most vulnerable to experience recurrences.
  • Studies suggest that Bipolar Disorder beginning in childhood or early adolescence may be a different, possibly more severe form of the illness than older adolescent and adult-onset Bipolar Disorder (Carlson, 1998; Geller, 1997).

Geller has completed many studies on child/adolescent Bipolar Disorder.

She has found that children/adolescents do not exhibit many of the manifestations of bipolar symptoms described in adults. However, they do have five symptoms that are specific to their condition. These symptoms are:

  • elation,
  • grandiosity,
  • flight of ideas/racing thoughts,
  • decreased need for sleep,
  • hyper-sexuality (in the absence of abuse or over-stimulation).

Based on her studies she has determined that these five symptoms provide the best discrimination of childhood/early adolescent Bipolar Disorder from uncomplicated ADHD (Geller, 1998).

Bipolar Disorder in Children

Important information about bipolar disorder in children from Dr. Ben Danielson of Seattle Children's Hospital.

Additional studies are ongoing by numerous authors regarding Bipolar Disorder and children. As time goes on a more clear picture of what Bipolar Disorder is and what can be done about it in children will emerge.

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ADHD vs. Drug Exposed Babies or Fetal Alcohol Syndrome

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Prevalence of "Drug Exposed" Children or "Fetal Alcohol Syndrome" vs. ADHD

A recent study by the National Institute of Drug Abuse reported the following:

  • 5.5% of women REPORTED using illicit drugs while they were pregnant;
  • 18.8% REPORTED using alcohol;
  • 20.4% REPORTED using tobacco while pregnant.

This compares to about a 5% to 8% rate in the population for a genetically based Attention Deficit Disorder in children and teens.

5% to 8% ADHD vs 10% Brain Damaged Due to Mother's Drugs or Alcohol Use

In our rural California county it is reported that 10% of all children born in the county were exposed to drugs or alcohol in utero by their mothers.

There are no known "safe levels" of drug, alcohol, or tobacco use while pregnant. The use of drugs or alcohol are especially dangerous to the developing baby and can often cause neurological problems.

When these children enter school, they often display:

  • problems with paying attention,
  • poor impulse control, a lack of self-control,
  • temper outbursts, little control of temper once it begins,
  • learning disabilities, problems in school,
  • behavior problems and social problems.

Head Injuries Result from FAS or Drug Exposure

These children are often misdiagnosed as having a genetically based Attention Deficit Hyperactivity Disorder, but what they really suffer from are structural brain injuries thanks to their mother's past behaviors.

They will also respond to treatment more poorly than will a child with ADHD. Parents must have very realistic expectations for treatment with either medications, diet, attend, or therapy when the problem is a structural head injury rather than ADHD.

Any of these treatments can help to optimize brain performance, which is always helpful, but won't give the "day and night improvements" that an ADHD child might receive.

Of course there are many things that can cause head injuries in babies. And these head injuries may look a lot like attention deficit hyperactivity disorder later in childhood. Some of these head injuries are caused by events completely our of our control, like accidents. But many of these problems are completely within the control of the mother while she is pregnant with her child, and this is tragic.

Videos from other sources on Fetal Alcohol Syndrome and Children:

Fetal Alcohol Syndrome & Fetal Alcohol Effects Video Part 1

Fetal alcohol syndrome is among the most common known causes of mental retardation and as such, it is a major public health problem. Lecturer Dr. Ed Riley Department of Psychology San Diego State University Center for Behavior Teratology 6363 Alverad...

Videos on "Fetal Alcohol Syndrome", Drug Exposed Babies, ADHD

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ADHD Depression and Teenagers

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ADHD, and Depression

With as many as 25% of teenagers with ADHD being clinically depressed, it is important to understand what depression looks like, why it is important to treat it and manage it, and the treatment options available.

When we think of someone who is depressed, we usually picture a sad, tearful, lonesome person. But teenagers with depression don't look like adults with depression.

Current studies show that there are about as many teenagers who are depressed as there are adults that are depressed, about 10% of the general population. And as we have noted, as many as 25% of teens with ADHD are depressed.

However, depression in teenagers doesn’t always look like depression in adults. Teenagers do not commonly display gloom, self-depreciation, or talk about feeling hopeless like adults do.

Teenagers with Major Depression are described as often becoming negative and antisocial. Feelings of wanting to leave home or wanting to run away will increase. There may be a strong sense of not being understood and approved of by parents, siblings, or peers.

Teenagers and Depression: What Parents Need to Know

From newideas.net the ADD ADHD Information Library, and Doug Cowan, Psy.D., clinical editor. Many teenagers suffer from depression, and many diagnosed with ADHD also have depression. It is important for parents to understand depression in teenagers, ...

The teen often changes, and becomes more restless, grouchy, or aggressive. A reluctance to cooperate in family ventures, and withdrawing from the family by retreating into their room is pretty common.

School difficulties are likely even in those few ADHD teens who were doing pretty well in school, as concentration is even more affected than from the ADHD alone.


Sometimes the teen will stop paying attention to personal appearance, and sometimes they will adopt the “uniform” of social groups that profess depression or despondency as a way of life. They often become much more emotional “at every little thing.” Often there is an increased sensitivity to rejection in love relationships as well.

Which reminds me of a Cornell University study that reported that the leading cause of teenage depression was breaking up with a boyfriend or girlfriend. And that the younger the teen was in this relationship, the more likely the breakup would lead to depression.

Teenage boys will often become aggressive with their parents or peers, seem more agitated around the house, and get into more trouble at home, at school, or with the law.

Teenage girls will sometimes become preoccupied with themes of death or dying, and become decreasing concerned about how they look. Think black – black hair, nails, clothes, lips.

Suicidal thoughts are common in depressed teens. Some studies suggest that 500,000 teens attempt suicide each year, and 5,000 are successful. That would be 10% of depressed teens. Other studies suggest that the number is 15% of depressed teens ending their life via suicide.

By the way, another study notes that of all the teenagers that commit suicide each year, only seven percent were receiving mental health treatment at the time of their death.

Poor self-esteem is common with teenagers, but especially with those who are depressed, and there is often an increase in “self-destructive behaviors” such as alcohol abuse, drug abuse, and sexual promiscuity.

Parents are often confused and frustrated when their teens begin to act like this. Sometimes parents become stern disciplinarians, or even put the teen down, which only serves to increase feelings of guilt and depression. Other times, parents feel helpless, and stand by waiting for adulthood to arrive. Of course neither course is the right one to take.

From 2001 to 2006, the use of ADHD medicines prescribed to girls was up by nearly 75%, and the use of antidepressant medications was up by nearly 10% in girls.

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Aspergers Syndrome

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Quirky: Asperger's is the Eccentric Child Syndrome

Asperger's syndrome is perhaps one of the most misunderstood of all the disorders in the autism spectrum (a range of mainly communication and social interaction developmental problems). One reason is that many Asperger's children simply appear "odd," and because of their normal physicality, they might seem typical enough, except for a few obvious behavioral quirks-like avoiding eye contact, or having intense eye contact. Often referred to as the "nerd disorder" or "little professor syndrome," Asperger's leaves its children just "weird," "socially inept," "quirky" or "eccentric." Unfortunately, the disorder is so much more than that.

Since many Asperger's children have sensory issues, they dress according to comfort and not style, and their preference in clothes often adds to their oddness, and to the labels of "nerdy" or "weird." This has been a sore subject for Heather on Model-the other contestants, and even the judges, have accused the potential model of "having no fashion sense."

ED: this excellent article below by Robbie Woliver on Asperger's is made available to us by The Long Island Press.

You might consider these other resources as well:

Our Children's Brains Part XII: Quirky: Asperger's is the Eccentric Child Syndrome

Betty Marie is 16. She can really be annoying.

First, you must call her Betty Marie. "It is not Betty," she says matter-of-factly. "It is Betty Marie."

She lectures everyone. She doesn't speak to you, she talks 'at' you. She will stare straight into your face, not always into your eyes, as if there is no space between the two of you. But if you infringe on her space, she freaks out. And she holds grudges.

Most of the time she won't laugh at your jokes; when she does, it seems forced. And eruptive. Her mother, Elizabeth, says that if Betty Marie tells a joke, it is usually totally inappropriate to the situation.

Those who know her say she rarely smiles and seems very sad. She has only one friend, Karen, from childhood, who has stuck by her inexplicably. They share a love of male rock stars. Betty Marie would like to one day marry Justin Timberlake.

Betty Marie knows every detail about every male rock star she obsesses over. Every detail.

Socially, she is an outcast. She dresses straight out of the 1950s, complains Elizabeth, is uncomfortable conforming to social norms, and finds it impossible to make social conversation. A self-described "nerd," Betty Marie is in the top of her class academically. Her IQ, she is quick to tell you, "is MENSA level." Elizabeth says her daughter's academic achievement "assures a fast track to college." She is a whiz at math, languages and the computer. She taught herself Greek and Latin. She is a superb musician.

She fights with her parents constantly and with her younger brother. But nobody realized until a few months ago that she has a medical condition, and wasn't just "being difficult," as Elizabeth describes it.

Recently, Betty Marie's young cousin was diagnosed with autism, and her aunt recommended that Betty Marie be evaluated. A diagnosis came quickly.

"The doctor took her whole history, tested her, examined her, sent her to other specialists, and the diagnosis was fast and concrete. It's a shame we didn't know this when she was younger, because they said we could have changed some of her behaviors through therapy. And had a better life together," says Elizabeth.

Betty Marie has Asperger's syndrome.

So, it is believed, did Albert Einstein, Thomas Jefferson and Charles Darwin. The geek down the street probably has it as well.

Even Heather Kuzmich, a contestant in this season's America's Next Top Model, has Asperger's. Like the other young women on the popular television reality show, she is tall and beautiful. Unlike the other contestants, and against the expectation of what a model should be, Heather is stiff, uncomfortable when others touch her and introverted. Although she frustratingly poses in profile as opposed to facing forward, and can't walk down a runway without hunching over, she captures that emotionless countenance that is gold for models. She's the fan favorite and the current front-runner. Heather's admittedly odd, but her not-so-unusual behavior prompted a colleague at the Press to comment, "If she's got Asperger's, then a lot of people I know have Asperger's." And he could be right.

Sound Familiar?

Asperger's syndrome is perhaps one of the most misunderstood of all the disorders in the autism spectrum (a range of mainly communication and social interaction developmental problems). One reason is that many Asperger's children simply appear "odd," and because of their normal physicality, they might seem typical enough, except for a few obvious behavioral quirks-like avoiding eye contact, or having intense eye contact. Often referred to as the "nerd disorder" or "little professor syndrome," Asperger's leaves its children just "weird," "socially inept," "quirky" or "eccentric." Unfortunately, the disorder is so much more than that.

First identified in 1944 by Dr. Hans Asperger, an Austrian pediatrician, Asperger's is one of five autism-related pervasive developmental disorders (PDDs). Autism, Rett syndrome, childhood disintegrative disorder, and PDD-not otherwise specified (PDD-NOS) are the others.

Asperger's, which had been undiagnosed or misdiagnosed for decades, became an official diagnosis only recently, when it was finally included in the 1994 edition of the Diagnostic and Statistical Manual of Mental Disorders-IV (DSM-IV). Between 3 and 7 per 1,000 children have the syndrome, according to the widely accepted Gillberg and Gillberg epidemiological data, but most Asperger's advocates and experts believe it is much, much higher than that data indicates. Dr. Jim Vacca, department chair of special education and literacy at C.W. Post College says, "The incidence of Asperger's could be more than 1 in 300. I know there's a high frequency."

Also, the estimate that four times as many boys as girls have Asperger's is in dispute, because conventional thought is that girls who have developmental disorders are often underdiagnosed.

Children with Asperger's display a wide range of symptoms, from mild to severe-but there are specific diagnostic guides that can help. Mostly symptoms include deficiencies in social skills, and interest in and need for routine, sameness and habit, which often leads to difficulty with change, along with preoccupations and obsessions.

Though part of the autism spectrum, Asperger's has differences from autism. The core distinction between autistic children and Asperger's kids is found in the young years, when they should begin to speak. The Asperger's child, according to the DSM-IV, must show "a lack of any clinically significant general delay in language acquisition, cognitive development and adaptive behavior (other than in social interaction). This contrasts with typical developmental accounts of autistic children, who show marked deficits and deviance in these areas prior to the age of 3 years." Simply put, Asperger's children speak on time or even early, and autistic children show speech delays or have loss of already established speech.

Temple Grandin, Ph.D., a scientist, professor, best-selling author and world-renowned lecturer who has Asperger's, spoke to the Press about how to protect children from being misdiagnosed-and about what it is like to live with Asperger's.

All Asperger's children, Grandin warns, have the potential to go undiagnosed because of the very nature of the warning signs for the disorder: "There is no obvious speech delay as there is with [classic] autism." But then, when children are older, the signs come: "By third or fourth grade, [Asperger's kids have] no friends; [they have] an area of strength [and they display] rudeness."

Girls in particular, she says, fall through the cracks: "Girls tend to be somewhat more flexible in their thinking. They get overlooked more often because they manage to fit in better than the guys."

Who Are These Kids?

Asperger's kids display their unique problems as they get older, such as body language awkwardness. These children are often uncoordinated and clumsy, with lumbering gaits and difficulties reading social cues. When they speak, it is often at and not with the listener. They are often unaware of proper body distance and are usually "in the face" of the person with whom they are speaking. Sometimes they prefer not to converse at all. But when they do, their speech seems rote or expressionless at times, and emotionless, lacking subtleties. They also take things very literally, which can lead to disagreements, misunderstandings and fights with their family and peers. And their facial affect, or expression, often appears flat.

Since many Asperger's children have sensory issues, they dress according to comfort and not style, and their preference in clothes often adds to their oddness, and to the labels of "nerdy" or "weird." This has been a sore subject for Heather on Model-the other contestants, and even the judges, have accused the potential model of "having no fashion sense."

Sensory overload issues are a main characteristic of these children, as they are often sensitive to sound, taste, smell, light and/or touch. Their sensory issues might determine some of their unique behaviors, such as eating only crunchy foods because they like the texture, or becoming anxious and frustrated in a room with certain lighting or acoustics.

"The sensory problems can be extremely debilitating," explains Grandin. "Extremely. And I think there needs to be a lot more research done on that because those sensory disorders prevent people from functioning in a job. How do you function in a job when the fluorescent lights look like a discotheque or a cell phone hurts your ears like a dentist's drill?"

Another main characteristic is that these socially uninhibited children will say exactly what's on their minds, without regard to social implications. They might find humor in things the average person won't, or might be very literal and not find the humor in a subtle witticism that all their peers are laughing at. They just might not "get" a very obvious joke. They are often mistaken for impolite or rude. There are painful social implications for these children.

"When I was in high school," Grandin recalls, "I used to get teased all the time, and it was absolutely, totally, terribly awful."

Asperger's kids sometimes seem to lack empathy, and their interactions often appear one-sided. This leads to the inability to form proper friendships, and often invites bullying and teasing. Many Asperger's children are isolated and friendless. But, again, remember: One aspect does not necessarily fit all children with the disorder. There are Asperger's children who can initiate and maintain friendships, or not exhibit the usual Asperger's obsessive interest. That said, it is often the Asperger's child's preoccupation and full immersion in specific topics like trains, dinosaurs, movies, baseball and the minutiae surrounding those topics that is a strong identifier for the disorder. The main character of the film Rain Man has been the iconic role model for Asperger's for years, but as Asperger's is more highly researched and understood, that autistic-savant stereotype has been replaced by a wide spectrum of others who have the syndrome, including the apparently normal but quirky child.

Asperger's children usually have a normal to superior IQ, but that is one of the most misleading misconceptions about the syndrome. Not all Asperger's children are brilliant, as is the common perception; some are even mildly retarded.

"You can be Asperger's and be Einstein," says Grandin. "You can be Asperger's and be not smart, too. You're not going to be, like, totally mentally retarded. It's a continuum. It goes all the way from kids who can't speak, who are severely handicapped, all the way up to Einstein."

Many Asperger's children are hyperlexic, possessing a precocious fascination with letters or numbers as well as with language, a specific topic of interest and in behavior in general. Although the speech of Asperger's children is often advanced, their social interaction is diminished, often because of a deficient ability for pragmatic, or social, speech. So, they can have an extraordinary vocabulary, but not necessarily know how to use it in a social sense. With their high-level, literal and unsubtle speech, they are bound for trouble when in a social context.

Unlike classically autistic children, who withdraw in physical interaction, Asperger's kids might inappropriately hug or touch, or even smother another person with attention.

Where On The Spectrum?

As more of these awkward children are being drawn into the autism spectrum disorder syndrome mix, the numbers for the rate of autism rise significantly. The autism rate is now 1 in 150, according to the Centers for Disease Control and Prevention (CDC). Many of these children were not diagnosed or were misdiagnosed prior to this, especially girls, but are now falling into the high-functioning-having better cognitive and learning abilities-part of the autism spectrum, whether through a diagnosis of high-functioning autism, Asperger's or PDD-NOS (the catchall term for quirky, odd kids).

Asperger's floats around the autism spectrum as experts attempt to figure out where it really belongs. Some experts, such as Uta Frith, author of Autism and Asperger Syndrome, say Asperger's children possess "a dash of autism." Others argue its position in the spectrum. It has also been classified as a nonverbal learning disability, part of the obsessive-compulsive disorder (OCD) spectrum, attention deficit problems (ADD/ADHD) and even a conduct disorder. Others say that Asperger's is no official disorder, but rather, weird kids with weird habits.

Asperger's expert Tony Attwood, Ph.D., the author of The Complete Guide to Asperger's Syndrome, says that Asperger's kids just have a "different, not defective, way of thinking."

He notes the Asperger child's different perception of the world around them and their own unique way of experiencing sensory events. He points out their strong need "to seek knowledge, truth and perfection," but they just do it differently than more typical children. To them, the solving of the problem is more important than what others might think about them: They see details, as opposed to the whole.

Autism advocates favor the inclusion of Asperger's (and PDD-NOS) in their spectrum because it helps raise their numbers, which benefits awareness and research dollars. Often, though, the autism side separates itself from Asperger's when it comes to advocacy and reaping the benefits of those research dollars. There is even a movement among some Asperger's adults who do not want to be labeled, treated or "cured," who consider themselves not handicapped by their disorder. They even call themselves "Aspies," a term that infuriates advocates who think the disorder is debilitating.

But there are those, like Grandin, who thrive in their Asperger's, even saying that there is no difference between a unique person with a couple of eccentric habits and a person with mild Asperger's.

She says emphatically, "They're the same thing. And nerd is another word for Asperger's. Computer geek is another word for Asperger's. They are the same thing. And they're called geeks. They're called engineers. They're called musicians. It's the same thing."

Symptoms that seem benign (nerdiness, e.g.) are considered a disorder when they negatively impact the child's wellbeing or ability to function in everyday activities. Remember, autism is a spectrum, and Asperger's is not always about being slighty odd. It can also include severely impacted children, ones who make absolutely no eye contact, drool or who cannot/do not groom themselves. For the most part though, Asperger's is on the high end of the autism continuum.

Talking And Walking

Social pragmatics and physicality are the two obvious giveaways that a child (or an adult) might have Asperger's.

The National Institute of Neurological Disorders and Stroke (NINDS) at the National Institutes of Health (NIH) states that the Asperger's child's social interaction may be inappropriate and peculiar: "For example, they may engage the interlocutor, usually an adult, in one-sided conversation characterized by long-winded, pedantic speech, about a favorite and often unusual and narrow topic." Also, although they are frequently self-described "loners" who want to make friendships, their "wishes are invariably thwarted by their awkward approaches and insensitivity to other person's feelings, intentions, and non-literal and implied communications (e.g., signs of boredom, haste to leave, and need for privacy). More typically, autistic persons are withdrawn and may seem to be unaware of, and disinterested in, other persons."

NINDS also points to physical clumsiness, stating, "Individuals with Asperger's may have a history of delayed acquisition of motor skills such as pedaling a bike, catching a ball, opening jars, climbing monkey-bars, and so on. They are often visibly awkward, exhibiting rigid gait patterns, odd posture, poor manipulative skills, and significant deficits in visual-motor coordination."

As part of Christian Clemenson's Emmy-winning performance of an adult with Asperger's, the character of Jerry "Hands" Espenson-an attorney in a fictional law firm on the television series Boston Legal-rarely makes eye contact, holds his palms rigidly fixed to the front of his thighs, and hops and purrs like a cat when under stress. Despite his actions, through behavior modification therapy, medication, and acceptance and encouragement from the show's colleagues, he regularly wins the toughest of cases.

The All-Important Diagnosis

Asperger's, like the other PDDs, involves problems, delays and deficits that require various areas of diagnosis and numerous forms of therapy. The best diagnosis and treatment is from an interdisciplinary team, including pediatricians, neurologists, psychologists and psychiatrists, behavioral therapists, physical therapists, occupational therapists and/or speech and language therapists.

It is important for parents to keep good notes on their child's developmental growth; it will help in establishing the diagnosis.

Although the disorder often manifests itself in idiosyncratic and eccentric behaviors, do not be misled in thinking that it is not serious. As NINDS reminds us, "The disorder is meant as a serious and debilitating developmental syndrome impairing the person's capacity for socialization, and not a transient or mild condition." Intervention is crucial, although it might not always be effective.

The first doctor to be seen should be the pediatrician, who will run a full physical examination and then refer the child to a specialist, most likely a pediatric neurologist and pediatric psychologist or psychiatrist. The medical team will assess the child's developmental history-speech onset and language patterns, specific interests, social interactions within the family and outside of the family, emotional health, self-concept and mood presentation.

Other assessments include neuropsychological functioning such as motor skills, executive functions, memory, visual-perceptual, visual memory assessment, manipulative skills, parts-whole relationships, visual-motor coordination, problem solving and concept formations and facial recognition. The team will check your child's self-sufficiency and compensatory skills. There will also be IQ testing.

There will be many communication assessments conducted as well, such as verbal testing for articulation, comprehension, vocabulary and language construction, and nonverbal testing of gaze, physical signs and gestures, language subtleties such as humor, sarcasm and irony, and prosody (speech rhythms, volume, stress and pitch). The coherence and content of your child's speech will also be evaluated.The team will also assess turn-taking, cue-taking and social rules of conversation. How your child spends his or her leisure time and how they react to unexpected situations will be observed, along with how they determine other people's feelings and intent.

Grandin has her own thoughts on diagnosis: "You can't diagnose this like diagnosing tuberculosis. It's not precise. These categories are not precise. It's a behavioral profile, like profiling a hijacker. And I'm being absolutely serious about that. It's not a precise diagnosis where they can do this medical test and they can tell you what genetic strain of TB you've got. That's precise. None of this stuff is precise."

The Billion-Dollar Question: What's The Cause?

The bottom line is that despite new public awareness and research, what we know about Asperger's-its prevalence, etiology or inhereditedness-is incomplete. Add to that how different each Asperger's child is from the other, and you have one of the biggest questions in modern medicine.

The potential causes are many, and all are being researched. They range from genetic and biological to environmental and social. There are many theories about diet and vaccines, age of the father and testosterone, mercury poisoning and other environmental toxins, and imitative modeling of family members.

What is becoming a popular consensus, though, is that despite the cause, it is believed that the child must have a genetic predisposition. According to Stephen M. Edelson, Ph.D., at the Center for the Study of Autism, in Salem, Ore., "Researchers feel that Asperger's syndrome is probably hereditary in nature because many families report having an 'odd' relative or two. In addition, depression and bipolar disorder are often reported in those with Asperger's syndrome as well as in family members. But the causes remain controversial and many."

How Is It Treated?

Despite the various professionals who can work with an Asperger's child, there are few therapies that have been proven to help, although there are many anecdotal success stories.

Asperger's children benefit from the following therapies: occupational, physical, speech-language, behavioral, psychological and social-skills. All types of skill building are encouraged. It is important to work with Asperger's children in the areas of empathy and social interaction, but it has been found that these children do not respond well to therapy that deals with self-awareness. Mostly, Asperger's children are supported by services that are usually used by those with high-functioning autism, nonverbal learning disorder, sensory integration disorder and the assortment of specific learning disabilities, which can all mimic or be concurrent with Asperger's.

"It's like the Olympic rings and [how] they overlap a little bit," explains Grandin. "You'll have an area of intersection-that's the way it is with [comorbid disorders like learning disabilities] and autism."

In terms of school services, many advocates feel that securing an autism classification will provide the child with more services than a psychiatric classification, such as ADD, which was the norm until recently.

Since Asperger's children live by their strict and rigid rules and routines, that can be used to help them function better and formulate positive habits instead of negative ones, which is the cornerstone of cognitive behavioral therapy (CBT).

The types of specific approaches that can be useful for the Asperger's child besides CBT include work on communications and pragmatic speech, one-on-one therapy, and social-group interaction. Therapists and teachers can use imitative modeling, repetitive drills, auditory supplements and mirror training, and practice correction of ambiguous language problems.

But again, Grandin has the last word. It all starts at home, she says: Manners, the strict way they were taught in the 1950s, is what Asperger's kids (and all children, she adds) need to learn. Once they have their manners set, they need to broaden their obsessions and interests, and find friends with those same shared interests. That's how Asperger's kids can best socialize. Once they make those relationships, they need the valuable skill of taking turns, whether it's involved with playing or speaking.

And The Prognosis Is...


Depending on the severity of the disorder, a person with Asperger's can lead a normal life. You probably know people who fit the bill, people who were probably never diagnosed with the disorder.

If the Asperger's child grows up and follows through with their obsession, they will find enjoyment in their work. A young Asperger's child plays with computers constantly, and he ends up as a computer programmer. Another is a precocious musician who becomes an accomplished composer. Some stay away from jobs where there is social interaction. Others go into fields where their focused interests are a plus, or where the environment is more "geek" friendly, like a computer tech company.

Ongoing research on Asperger's is being conducted by the NIH, NINDS and Learning Disabilities Association of America, in a partnership with the Yale Child Study Center, so there is promise.

Grandin says that about 75 percent to 80 percent of her generation of Asperger's adults (she is in her 50s) are in the workplace. They settle into jobs like the tech field where they are comfortable, remaining undiagnosed or keeping their diagnosis quiet, for medical insurance reasons. Grandin thrives in her autism, saying, "I like the clarity of thought" that she has with her form of Asperger's.

"If you cured Asperger's, you would have no musicians, you would have no scientists," she adds. "[You would have no] famous people like Mozart, Van Gogh, Darwin, Carl Sagan, Thomas Jefferson, Einstein.

"I wouldn't want to be not autistic."

For a list of symptoms and the full informative and insightful interview with Dr. Temple Grandin, and to read the entire "Our Children's Brains" series, log on to www.longislandpress.com.

Article courtesy of the Long Island Press. Long Island Press & LongIslandPress.com, All rights reserved.

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Auditory Processing Disorder

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Auditory Processing Disorder: The Hidden Disability

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.

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).

What is Auditory Processing? Part 1 of 6: Introduction

Angela Loucks is a licensed Doctor of Audiology in Kansas who has a specialty interest in Auditory Processing Disorder. During this presentation, which took place on March 9, 2011 at the Lawrence Public Library, she explains Auditory Processing Disor...

Auditory Processing Disorder: The Hidden Disability

By Robbie Woliver with Mo Ibrahim. This article appears courtesy of the Long Island Press.

Winner of the 2006 FOLIO Award

"What?"One word. 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 (each type of speech sound). 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 Kings Park, 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 ADD (a patient can have both). 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 APD parents 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). Mothers and fathers are asking each other about things they would never have thought about before-a droopy right eye, cafe-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

* note-takers

* less homework, so the student can learn the work as opposed to having hours of fruitless study

* tutoring

* 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 six 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 hearing 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.'"

For More Information On APD:

Kathleen Page (H.E.A.R.S.): www.hearsny.com
Dr. Jay Lucker: www.nacpd.org
CAPD Listserve: capd@maelstrom.stjohns.edu
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

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

This article is written by Robbie Woliver with Mo Ibrahim. This article appears courtesy of the Long Island Press.

All rights reserved: The Long Island Press

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Autism in Children

Autism was first described in the 1940s, but the condition was poorly understood and little known until the 1990s. At first, autistic children were thought to suffer from schizophrenia or emotional trauma. Then, aloof and unloving "refrigerator mothers" were blamed for their children's odd behavior.

Now considered a spectrum disorder, autism ranges from its "classic" state to Asperger's Syndrome, characterized by social and communication difficulties but average to superior intelligence. Children with the disorder may exhibit repetitive behaviors as well, such as hand-flapping, head-banging or rocking back and forth. Those with classic autism generally don't speak, seem unaware of the outside world and often require institutionalization.

According to the Centers for Disease Control and Prevention (CDC), autism rates have climbed from about one in 2,500 children in the 1980s to between one and four in 500 today, but it's unclear whether the number of cases is rising or greater public awareness and broader diagnostic criteria have brought more cases to light.

Here are some other helpful resources for you to consider:

Autism: Why is it on the Rise?

by Ela Schwartz in the Long Island Press. Used by permission.

Luke Gilmore has come a long way in the past few years. The 5-year-old boy used to avoid eye contact and would spend his time staring out the window or racing distractedly around the house. Now he plays with other children and can even identify about 40 words by pointing them out to his teachers. But Luke's father, John Gilmore of Long Beach, says his son hasn't spoken a word since he was about a year old.

Luke has been diagnosed with autism, a neurodevelopmental disorder whose causes remain unknown.

Gilmore believes Luke's autism was caused by mercury poisoning via three vaccines containing thimerosal, a mercury-based preservative used in childhood vaccines since the 1930s. In 1999, the U.S. Public Health Service recommended that manufacturers reduce thimerosal content from about 25 micrograms per shot to trace amounts, although older vaccines may still be on the market. But the government has not officially identified mercury as a cause of autism. Indeed, many medical professionals and even other parents like the Gilmores say the correlation isn't clear.

Luke's parents began noticing changes after his first vaccination, at the age of 2 months, when he developed eczema and asthma. After another round of vaccinations, at 8 months of age, Luke stopped making eye contact and would alternate between being "spacey and hyperactive," says Gilmore. At about 1 year, Luke got his third round of vaccines and "all hell broke loose," as his father puts it.

"He'd just bounce off the walls constantly, had gastrointestinal problems and his eczema was out of control," Gilmore remembers. "We knew something was really wrong. We'd seen three distinct changes in our son after three rounds of vaccines."

Gilmore is not alone in his belief that autism is a medically caused catastrophe. Many parents with autistic children have joined groups that seek to eliminate mercury from vaccines altogether. Gilmore is president of one such group-the New York Metro chapter of the National Autism Association. Others include the Coalition for SAFE MINDs (Sensible Action For Ending Mercury-Induced Neurological Disorders), No Mercury and Generation Rescue, all of whose members say their children were developing normally until regressing into the desolate world of autism between the ages of 2 and 7.

Their proactivity was rewarded this summer when Gov. George Pataki signed into law a bill limiting the use of thimerosal in vaccines for pregnant women and children. The bill was powered by Assemb. Harvey Weisenberg. A former educator, Weisenberg is familiar with the needs and issues facing children with physical and mental disabilities. Determined to improve the quality of life for disabled people and their families, he spearheaded the recently passed legislation that limits the amounts of thimerosal in vaccines given to children under 3 or pregnant women.

"Although there's no evidence thimerosal is the cause, we're aware mercury is toxic and poison, so why inject this into a child?" he says. But some parents say this isn't enough. They want thimerosal banned in all 50 states and financial compensation for what they consider to be injuries caused by vaccines.

"I have three children with autism, so clearly there's a genetic basis," says Michele Iallonardi of Hauppauge. "But I believe that my children would not have autism if they hadn't been exposed to thimerosal. Some people are genetically predisposed-their bodies don't have the ability to get rid of the thimerosal injected into them with their vaccines. My children are a perfect example."

Iallonardi says her eldest son, Jackson, 4, suffered developmental delays from early infancy, and because he had health problems, doctors recommended two dosages of the flu shot when he was 2 years old. "His behaviors got worse," she says, "and about a month later he was diagnosed with autism."

After that, Iallonardi stopped vaccinating her twins, Bennett and Luca, now 2, when they turned 3 months. She says their autism is not as severe as that of their sibling.


Autism was first described in the 1940s, but the condition was poorly understood and little known until the 1990s. At first, autistic children were thought to suffer from schizophrenia or emotional trauma. Then, aloof and unloving "refrigerator mothers" were blamed for their children's odd behavior.

Now considered a spectrum disorder, autism ranges from its "classic" state to Asperger's Syndrome, characterized by social and communication difficulties but average to superior intelligence. Children with the disorder may exhibit repetitive behaviors as well, such as hand-flapping, head-banging or rocking back and forth. Those with classic autism generally don't speak, seem unaware of the outside world and often require institutionalization.

According to the Centers for Disease Control and Prevention (CDC), autism rates have climbed from about one in 2,500 children in the 1980s to between one and four in 500 today, but it's unclear whether the number of cases is rising or greater public awareness and broader diagnostic criteria have brought more cases to light.

Densely populated Long Island has a high number of autistic children. May-Lynn Andresen, a registered nurse and the senior administrative manager at the Fay J. Lindner Center for Autism at North Shore-Long Island Jewish (NSLIJ) Health System in Bethpage, is the parent of a child with an autism spectrum disorder. Based on stats provided by the CDC, Andresen estimates that there may be as many as 18,000 autistic children in Nassau, Suffolk and Queens. "Autism is a big issue for us here," she says.


David Kirby, a Brooklyn-based journalist, first heard about the thimerosal theory in 2002. He was skeptical until learning that a rider tacked on to the Homeland Security Act-dubbed the "Eli Lilly Protection Act" after the primary manufacturer-absolved pharmaceutical companies from liability for damages caused by the vaccine additive. The rider was repealed in 2003.

Kirby chronicled the experiences of parents who formed the Coalition for SAFE MINDs in Evidence of Harm-Mercury in Vaccines and the Autism Epidemic: A Medical Controversy. Published in April 2005, the book investigates claims that the FDA failed to total up the amounts of thimerosal in the increasing number of vaccines given to children and conduct safety studies, thus exposing children to amounts of thimerosal that far exceeded federal safety limits.

The book also alleges that the CDC manipulated data from the federal Vaccine Safety Database to eliminate a statistically significant link between thimerosal and autism, ADHD and speech delay, and that the CDC refused to disclose data and records until required to do so under the Freedom of Information Act. Kirby says government officials refused requests for interviews.

"I would have been willing to publish anything they had to say," he says, stressing that "evidence" of harm is not the same as "proof." People should reach their own conclusions after reading the book, in which Kirby does not take an anti-vaccine stance, he adds.

"If I had children, I would have them vaccinated," Kirby says. "Children can lose their sight or hearing, become disfigured, even die from these diseases."

Thanks to vaccinations, few of us recall the days when catching diseases such as diphtheria or measles was a childhood rite of passage. Smallpox has been eradicated; polio is rarely seen outside of the Third World. But when vaccination rates drop, diseases regain a foothold, as Japan, England and Sweden discovered when whooping cough and measles re-appeared after parents fearful of side effects stopped inoculating their children.


While there have been many studies aimed at unearthing the causes of autism, none has proven a link between the disorder and thimerosal. For the most part, the medical community attributes autism to genetic factors, and statistics do show a correlation. According to the CDC, if one child in a family has autism, the odds that a sibling will be affected increase significantly.

The National Institutes of Health (NIH) and independent researchers, who are trying to identify genes that could cause autistic symptoms, say these traits often run in families. That's something many parents of autistic children acknowledge, even as they insist there's more to blame for the condition than just chromosomes and genes.

Not everyone in the autism community believes that mercury's to blame. Many cite the fact that the CDC and other public health organizations conducted five major epidemiological (large-population) studies examining the health records of hundreds of thousands of children in the United States, the United Kingdom, Sweden and Denmark. According to the Institute of Medicine (IOM), which pored over the data, those studies show no proof that autism is linked to thimerosal.

Proponents of the theory that thimerosal and autism are linked counter that the IOM failed to give equal weight to biological and toxicological laboratory studies showing the negative neurological effects of thimerosal.

"Autism could be caused by any number of factors, but the potential for thimerosal to be one of them is there, based on research done by qualified professionals," says Chris Petrosino, the parent of a son with autism and co-president of the Nassau/Suffolk chapter of the 500-members-strong Autism Society of America, which supported the legislation to remove thimerosal from vaccines.

Those on the other side of the fence say mercury-blaming parents are upset-seeing your child regress into autism is traumatic-but that emotion is no substitute for science and facts.

Retired Roslyn dentist Marvin Schissel is an adviser to the American Council on Science and Health and the National Council Against Health Fraud. His adult son was diagnosed with autism spectrum disorder at age 25. Schissel sees no point in funding more thimerosal studies, since the preservative has been removed from most vaccines and studies have shown no concrete connection.

"Why keep wasting money and energy with this issue when we could be investigating other, more promising areas?" Schissel asks.

Marty Schwartzman, too, has his doubts about the thimerosal theory. The Bayside resident, president of the Long Island chapter of the National Alliance for Autism Research (NAAR), says his twins, Allyson and Robby, now 12, did not show signs of regression after receiving vaccinations.

"They were both delayed, but then, for some reason, Allyson took off," Schwartzman says. Now a typical seventh-grader, Allyson wants to work with autistic children when she grows up. Her brother has autism and attends the School for Language and Communi-cation Development in Glen Cove.

Schwartzman, however, considers himself open-minded and doesn't discount any potential links to the disorder that affects his son. "I go to a lot of presentations and read papers [about autism], and [many things] sound plausible, but I'm not a chemist and I don't understand the structure of cells," he says. "I think we need to explore the cause of autism to the fullest extent."

Those who do blame thimerosal are encouraged by new developments. The Los Angeles Times published a Merck company memo warning of the dangers of high mercury doses through increased immunizations. The memo was dated 1991, eight years before the FDA recommended that thimerosal be removed from vaccines.

In California, autism rates are dropping, in keeping with the prediction of lower rates after thimerosal's phase-out. The University of Texas found that school districts in environments with high mercury levels had the highest rates of special-education services, and that autism rates increased by 17 percent for every 1,000 pounds of mercury released. The emissions came from coal-burning plants, with Texas releasing more than any other state.


Autism affects more than the child diagnosed with it. Parents exhaust themselves trying to fill the child's needs. Siblings feel neglected. Financial and marital woes often set in because insurance seldom pays for expensive newer therapies and one parent may have to quit work to care for the child.

And our society is responsible for caring for a staggering number of autistic individuals. Robert Krakow, an attorney who represents vaccine-injury cases and is the father of a child with autism, is also chairman of the board of Lifespire, a not-for-profit organization that provides housing and services for 5,000 disabled adults in the New York City region. Krakow says that if you multiply the cost of special-education services for a child over several years, then add about $225,000 that's spent per year on each adult resident at an institution, the cost comes out to about $13 million to care for an autistic individual who requires housing and services over his or her lifetime.

Andresen says that huge numbers of developmentally disabled Long Island children need to be helped and supported, brought in to local school districts and protected from teasing and bullying. "Communities need to rally and provide opportunities for them to practice social skills in different environments and support them with jobs," she says. "We need to understand that it truly takes a village."

This article appears courtesy of the Long Island Press.

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Giving Autism a Voice

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Giving Autism A Voice

By Ela Schwartz, Courtesy of the Long Island Press and is used by permission.

Oyster Bay resident Evelyn Ain's story is similar to those told by many parents who become well-acquainted with autism. Her son Matthew was a normal toddler, babbling, smiling and drinking out of a cup. When he was about 10 months old, he stopped talking and began withdrawing.

"He looked like he was in a fog," says Ain. "It got to the point where a stranger couldn't come into the house without Matthew freaking out."

Her son's pediatrician found nothing wrong. His neurologist measured Matthew's head and checked his reflexes. Evaluators sent by the Nassau County Health Department's Early Intervention Program said he might be "a little autistic," Ain says.

Neurologists told her they refused to diagnose autism before the age of 2, but Ain was determined to resolve once and for all whether or not Matthew had the disorder. She brought her son, then 18 months old, to the Kendell Speech and Language Center in Kendell, Fla., to be evaluated by a speech/language pathologist board-certified in behavioral analysis.

The Center confirmed Ain's suspicions and diagnosed Matthew with autism.

"I died right there," she says. "But I was able to come back to Long Island and get him the services he needed."

Concluding that many parents were looking for answers, support and empowerment, she launched Spectrum Magazine for Parents of Children With Autism and Developmental Disabilities in 2004. The magazine is now national, with a circulation of 60,000.

"Spectrum is a way to bring families together on a larger level and provide a community," Ain says. "Autism is nothing to be embarrassed about. Our families just have different lifestyles. We choose schools differently, travel differently, live differently."

In April this year, the magazine shed a spotlight on its national debut at the Garden City Hotel. Guests at the gala included Anthony Edwards, formerly of ER, and Assemb. Harvey Weisenberg (D-Long Beach), who received the Lifetime Achievement Award.

The publication has grown by leaps and bounds already: What began as a three-person operation in 2004 now employs about 25 people across the country. Ain looks forward to the magazine's continued growth.

"I'd love to see Spectrum go international and have a Spanish-language edition to reach Latin American communities," she says.

Cris Italia, editor-in-chief of Spectrum, says the magazine's mission is not just to keep parents of autistic children abreast of research and treatments. It's also to spark ideas about fun activities these parents can enjoy with their autistic youngsters. "We don't want to be all gloom and doom," Italia says. "We write about trips to take and games to play. We provide hope."

-Michele Pepe contributed to this story.

Courtesy of the Long Island Press and is used by permission.

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How Autism Affects the Family

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Dancing In The Dark

A Personal Story: How Autism Affects The Family

By Susan Harris. This article appears courtesy of The Long Island Press. All rights reserved.

It's been two years, two months since that devastating day in 2003 that I got my son Oliver's autism diagnosis. It sounds so clichéd, but I remember it like it was yesterday. I'm sure all of us parents of autistic children do. It's the day that your life changes forever. The day that your life takes a turn for the worse.

I was sitting in my car on a beautiful summer day in front of a Kinko's copy center. I had just made copies of my son's medical records, the first of many medical records I would have to copy. My cell phone rang and it was the social worker who I met at the hospital where my son had just been evaluated. She told me the doctor had a diagnosis, and that my suspicions were correct. Indeed my son had autism. I was devastated. There is no way to convey the pain that runs through your body. I don't even remember the car ride home. I just remember thinking our happy family's life was no longer going to be the same. Of course, at that moment in time, I had no idea just how true that statement would prove to be.

When I got home and told friends and family members about the diagnosis, everyone said the same thing: "God only gives you things you can handle." First of all, I'm not a religious person, so maybe God was punishing me for not being a big believer. Or was it that people tell you this because, really, what else could they say? Maybe they felt by offering that reassurance, it would make the situation a little better. Sort of like when it rains on your wedding day and everyone tells you it's good luck. (By the way, it poured on my wedding day, like a monsoon, so by those standards I should've had 100 years of good luck.)

Well, no such luck, now that we have autism in our lives. For those of you who do not know what autism is, or do not know an autistic person, you soon will. Autism is a complex disorder that affects the socialization and communication centers of the brain. More alarming, it affects one in 166 children a year, according to the organization Autism Speaks, which is up from five years ago, when it affected one in 500 children. That means that 67 children are diagnosed a day, almost three children are diagnosed each hour and 2,000 children diagnosed each month. In the United Kingdom, the number is now 1 in 150. Ours should catch up shortly. The rate of this epidemic's increase is alarming.

Experts do not know what causes it, or why it is on the increase. What is known, however, is how devastating it is to the family.


What happens to the family unit when autism enters it is as unbelievable as the diagnosis itself. Everything you know to be true is tested-marriages, siblings' lives, finances, living with your own thoughts, and friendships, to name a few.

Seventy-five to 80 percent of marriages of parents with autistic children fail. That is a huge percentage.

In my own marriage, the diagnosis, at first, brought us closer together. But then important decisions had to be made, and that was the hard part. Spouses don't necessarily agree. So you fight, and the fights become more vicious than any fight you ever had because the outcome of your child's well-being depends on your decisions. I can't even remember what we fought about before the diagnosis. I'm sure it was insignificant and trivial. Now we have these fights that get so intense they scare me, and they sadden me. Unfortunately, they are now very much a part of our lives, as much as the autism.

Oliver, now 4, was diagnosed at 17 months old. At 9 months, I had my suspicions. At 12 months I addressed them to my pediatrician who did not want to "put a label on it." Finally, at Oliver's 15-month check up, I said to my pediatrician, "I'm telling you something is not right with my child. And, although I didn't go to medical school and I do not have a fancy diploma hanging on my wall, my gut feeling is, something is wrong." Only when I said this did he acquiesce: "Okay," he said. "Let's go see a child neurologist."

One of the reasons I had my son evaluated for autism was that my oldest son, Matthew, then 9, kept asking me, "Why doesn't Oliver like me, Mom?"

And, I would say, "Of course he likes you, honey. He's just new to us and we are new to him. Don't worry, before you know it, Oliver will be getting in your way, and you'll be saying. 'Mom, Oliver is bothering me.' And, I'll say, 'Honey, he just loves you and wants to be with you.'"

Well, that scenario never played out. Oliver never lit up like children usually do when older siblings entered the room. In fact, he didn't notice anybody at all when they entered the room. It's very hard on my children when they go to play with Oliver and he's just not interested.

What's also very difficult for the siblings of autistic children is that they see how hard these autistic children work. My son puts in a full day of school and four hours of therapy after school. He starts at 9 a.m. and finishes at 8 p.m., Monday through Friday. He puts in a 40-hour work week. There is no time for play dates. It's all work and no play.

Oliver used to have therapy on the weekend as well. He'd have between two and four hours on Saturday and a maximum of two on Sunday. We stopped the weekend therapy for two reasons: (1) it's expensive, and (2) therapists are very hard to come by, especially on the weekends. Autism can burn you out quickly. The therapists do need some sort of mental escape, so most of them take the weekends off. Keep in mind, this job is very mentally and physically intense-these therapists get banged up pretty bad sometimes. They get hit, scratched and bitten. Jessie, a former therapist of ours, had her nose broken by an autistic child who head-banged her.

So now, on weekends we try to do things like go to a movie, a zoo, an aquarium, or visit family and friends. At one point Oliver had a socialization class on Sundays, and now he is taking swimming lessons that day.


Siblings see the stress that the parents go through. They see and hear the fights. They know what life used to be like, and they know it's not like that anymore. They also feel neglected. Mommy and Daddy used to be there for them, and now, because autism is a full-time job, the parents devote their time to the child who is autistic. That's a hard lesson for the other children to learn.

Oliver having autism has definitely affected my other children. I know that it upsets the both of them, but they try to be brave for my sake.

Matthew, now 12, won't talk about it with me, but I recently found out from a friend of mine that he discusses it with her, which I'm glad he feels comfortable doing. I just wish it were with me. Neither of my two kids have any interest in going to a sibling support group, even though I think it would be a tremendous help to them. They are adamant about not going, and I have to respect that.

In Matthew's school they do a school-wide project, "Pay it Forward," where they have to do something to benefit the community. Matthew started a school chapter of Autism Speaks, where he is supporting autism awareness as well as trying to raise money to help the cause.

Danielle, now 8, is amazing with Oliver. She has become a little special-education teacher to him. She observes him with his home therapists, and then practices what they preach. If she comes into a room and says, "Hi, Oliver," and he doesn't respond to her, she will repeat it a few more times. If he still doesn't respond and happens to be watching TV or looking at a book, she will turn off the TV or take the book away from him and say, "Oliver," I said 'Hello' to you-what do you say?'" And, then he will say, "Hi, Danielle." She doesn't take any crap from him. She is patient, but very firm. She has told me that she wants to be a special-education teacher, which she would be so wonderful at.

But one thing that deeply bothers me about Danielle's situation is that for her there is no escape from autism. She has it at home, but she looks for it at her school. Apparently, this year they have special-needs kids mainstreamed at her school and she constantly observes them and then comes home and tells me about their behaviors. I don't want her to be obsessed with this. She should have some sort of a carefree childhood, and obviously she cannot escape it at home, but I would like her to escape it at school.

For me, the most painful thing was to hear from Matthew that he wished he were the one to be affected by autism. It's not uncommon to get responses like that. I heard from parents that their children with autistic siblings wished they were an only child. Of course, typical children say that of their typical siblings. It's just sad to know that in this case, because they see the hardships that arrive with autism, these siblings really do mean it.


Autism is incredibly expensive. I knew this fact when I set out to write this article, but, ironically, it was only when I started writing this piece that I began to realize how much money we spend out-of-pocket to pay for Oliver's services. Our state and local governments pay for the autistic child's education, as well as certain therapies that they think the child deserves. Of course, they only provide the child with a minimum of therapies, and a minimum of time. It is up to the families to supplement the other therapies, or the amount of therapy. This is where it gets costly. The families pay for extra physical, speech, OT (occupational therapy) and ABA (applied behavioral analysis), just to name a few of the types of therapies. Therapists get anywhere from $35 to $150 an hour, depending on their experience.

We built a Sensory Room in our basement, which cost about $10,000. It is filled with things like a ball pit, trampoline, mats and swings. All these things help autistic children focus. Sensory input is as important to autistic children as anything else.

Then there are babysitters. Although Oliver is in therapy and school all day, I have to hire babysitters to help with my other children to make sure they get off the school bus. This gets to be expensive, even at $15 an hour.

Special diets are something parents of autistic kids believe in. Some, for example, go on a GFWF diet-gluten-free, wheat-free diet. The ingredients are hard to come by, and you have to shop at specialty stores. The food is expensive and you have to make a lot of meals from scratch and that is also time consuming. I know a group of people in my town who make a pilgrimage to the Catskill area around Passover. They go to the Hassidic communities to buy pareve, or kosher, foods.

There are many services autistic children require. Some include art therapy, music therapy, chiropractic cranial sacral therapy (scalp massages), the Pegasus horse-riding program, karate and floor time, in addition to the typical therapies. On an average week, we spend $550 out of pocket just for our son's ABA therapy. Oliver's developmental psychologist alone gets $150 an hour. That is about $30,000 for therapy a year just so our son can potentially lead a somewhat normal life. None of these therapies are covered by insurance. And, with all the time and money spent on these therapies, unfortunately, there are no guarantees.

You do it all, and you kill yourself doing it, because in the end you can say, "At least we tried everything."


You beat yourself up along the entire journey. In my own scenario, I drive my child to school every day because I cannot bear to put my nonverbal 4-year-old on a bus. My commute each way is 50 minutes long. I do a lot of thinking on that car ride because, after all, my child cannot talk to me.

I make that trip four times a day. I am in that car a minimum of four hours a day where I have long one-way conversations with Oliver as we commute back and forth from home to school to therapies to home again.

The car routine is practically the same every day. We see school buses, so we say, "school bus." We live in horse country, so every day we say, "Hello, horsie" and I ask, "What does a horse say?" and Oliver neighs. He notices the stables and now says, "barns," and I ask him what the horses eat.

When we get to Matthew's school, I point out to Oliver that it is where Matthew goes to school. Once we are on the highway we take notice of the trucks, and the different colors of cars. We talk about the weather if it is rainy, or very sunny, etc. Oliver may ask me for something like juice or a book or some music that he wants to hear, but that is the extent of our conversation. I do the talking; he listens but he doesn't say much. It's hard to keep the dialogue going when the other person doesn't talk. Imagine you are sitting in a car with a person who speaks only Russian. You have little or no knowledge of the Russian language and he has just a little English at his disposal. At some point there can only be silence. So you zone out and you are left with what's on the radio or your own thoughts-which can get very ugly sometimes.

During those long commutes, all I have are my thoughts. So, I question every little thing that we do for our autistic child and our other children. I say things to myself like, "Would it have been better if he was born typical, but got cancer? Yes, there is that chance that he could die, but at least cancer is charted territory. There is a chance of a cure. And, more importantly, you have your child. Not just a shell of a child. At least with cancer, you have verbalization, you have a personality, you have a child who wants to be mothered, who cares if you are in a room with them or not." It's sheer heartbreak.

Eustacia Cutler is the mother of Temple Grandin, an accomplished, successful adult with autism. I think she said it best in her book, A Thorn In My Side: "A baby needs a mother to know she's a baby. But, a mother needs a baby to know she's a mother." I feel so cheated at times. I go through life looking at my child all the time, thinking: "When will he respond to something, anything, to get that look on his face that just says, 'I've just been to Disneyworld?'" Unfortunately, those looks come so far and few between.

Autism is a steep learning curve. You learn about the disorder, and all the new vocabulary that comes with it. You learn to deal with your emotions. You learn to talk to your child who does not speak the same language as you. You learn to deal with autism because you have to. You either sink or swim. You learn how to deal with your spouse and your other children. But you also learn who your true friends are. When autism enters your life, relationships are tested. Friends who you thought would be there for you, you'll find, are unable to deal with autism. I've had friends who said they'd stick it out with me, but soon began treating autism like it was contagious, like it was leprosy. I had a friend who insisted that she drive my daughter to a gymnastics class with her daughter and then accused me of taking advantage of the situation, even though I never asked her for this favor.

Then there are the friends who can't understand that you no longer have time to socialize with them, not because you don't want to (because God knows you need them more than ever), but because you don't have the time like you used to before autism. But the friends who stick it out, who listen to the tears, are amazing. And I have made some incredible friendships with people who are in the same boat, and that has helped me immensely.


I started this article off by saying the day you get your autism diagnosis is the day your life changes for the worse, not for the better. It took me months to write this article; mainly, for the lack of time in my day. But also, I just couldn't finish it. It became too painful. For the record, it's now been over two years since I've gotten my son's autism diagnosis, and I can honestly say, I now feel the best I have since that dreadful day.

There is a grieving process. I'm sure it's not the same for us all. For me, it took a while to get on with my life again. I no longer feel that my life has changed for the worse. I feel it has changed for the better. I love all my children the same, but I feel such incredible unique love for my son with autism. There isn't a moment that I'm not telling him how much I love him. Or how lucky I am to have him as my son.

Oliver is an adorable little 4-year-old, with a most special smile. He is so loving, and actually craves to be hugged and kissed. Thank God for that, because a lot of these kids cannot stand to be touched. It is as if they were being stabbed. Can you imagine a new parent who wants to cuddle their newborn and their child actually pushes them away? It's devastating.

Oliver is very bright, but lacks language and socialization skills to make him like a typical little boy. He is very hyper and cannot sit for more than a minute. He is so very happy and that makes me happy. He loves trains. Wrong. He is fascinated by them.

He constantly "labels" items like foods, vehicles, clothing, toys, etc., referring to them out loud by name. He only has two sentences: "I want..." and "Can I have...?" He has also learned to sight read, even though he doesn't have communication skills. Although he cannot have a conversation with you, he has memorized TV shows that he watches and can recite them back to you word for word. This is called scripting. He also talks to his hands as though they were puppets. Weirdly enough, he sometimes has to be prompted to say "Hello" or "Bye" to a person, but quite often I hear him saying goodbye or hello to inanimate objects. "Bye, puzzle," "Bye, snowflake," "Bye, chair."

That labeling and repeating and other aspects of Oliver not being able to verbalize can have serious repercussions. When he's ill, for example, he cannot tell me. I have to be intuitive. It is very difficult with a sick autistic child who has a fever, but does not have the vocabulary to tell you what hurts. It's very frustrating. I say, "Oliver, do your ears hurt?" and he repeats, "Ears hurt." "Does your throat hurt?" He repeats, "Throat hurt." I say, "Do you like rusty nails?" and he says, "Rusty nails."

A sore throat or ear infection is bad enough, but I'm nervous about appendicitis with Oliver. It is hereditary-both Danielle and my grandmother had it. It has been known that autistic kids die from appendicitis because they don't have the vocabulary to say "stomach," or be more specific to show where they hurt.

It took a while to get here, but the important thing is that I'm here. I have learned to love the quirky behavior that comes with autism. When Oliver drew on my wall in my home's front entrance, I could have had hired someone to replace that wallpaper. Instead, I decided to put a frame around it. After all, it's my son's artwork and I don't get much of that type of thing, because unlike typical preschools, for Oliver, it is all work and no play.

Someone once told me when I was planning my wedding, "Don't worry if the ceiling falls down, just dance around it." Well, I think I'm finally dancing.

This article appears courtesy of The Long Island Press. All rights reserved.

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Childhood Depression

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By Mo Ibrahim. Article appears courtesy of the Long Island Press.

Your kid feels like an outsider? She often has headaches? He's acting a bit moody? Not to worry, right? Sounds like every kid. These are not uncommon descriptions of elementary, middle school and high school students. But parents, be wary: These symptoms could very well be warnings of serious childhood or adolescent depression.

According to the "Report of the Surgeon General on Mental Health," 10 to 15 percent of American children and adolescents have at least a few symptoms of depression. That's about 7 to 10 million children.

In 2000, according to the National Institute of Mental Health, suicide was the third leading cause of death among 15- to 24-year-olds, as well as the third leading cause of death among 10- to 14-year-olds. Although an equal amount of prepubescent boys and girls suffer from depression, twice as many girls have depression after puberty. While depression in children and adolescents is not prevalent, it is something to look for. Treating your child now can help prevent full-blown adult depression later and, more important, save your child's life.

It's also important to note that depression is not about "feeling low." It goes much deeper than that.

Most, but not all, mental health professionals agree that people diagnosed with depression tend to have a chemical imbalance in the brain. These chemicals, called neurotransmitters, aid communication between brain cells. Serotonin and norepinephrine are the two neurotransmitters that are most commonly imbalanced. Serotonin imbalance may lead to irritability, anxiety and sleepiness, whereas an imbalance of norepinephrine can cause fatigue and a depressed mood. Whether this imbalance causes depression or whether depression causes the imbalance is unknown.

Lucy, now 22, of Port Washington, suffered from depression throughout her youth in Northern Nevada. She was officially diagnosed at age 14 and hospitalized at 15, and it wasn't until last year that she finally weaned herself off Zoloft, an antidepressant she partially credits for her recovery.

"I initially felt sadness. I didn't feel like I fit in at school or with other kids at my school," Lucy recalls. "Headaches and sleeping disorders didn't come until later during my adolescence.

"Obviously, I knew I was different than my friends and family," she continues. "I was aware that I was somewhat of a hermit, an outcast, but my expression and my behavior was what got my parents to try to take action with therapy."

Most people who suffer from depression are so stuck in the mire of hopelessness and bleak, utter dispair, it's difficult for them to get out. As with Lucy, family is often the key.

Childhood Depression
But family can also be the cause.

Why would a child suffer from depression? David Fassler, M.D., director of the American Academy of Child and Adolescent Psychiatry (AACAP) in Washington, D.C., implicates both nature and nurture.

"Some people are genetically more vulnerable," he says. According to Fassler, a child with one parent who has depression has a 25 percent chance of having childhood depression. The child has a 75 percent chance if both parents are depressed.

Even if your child isn't exhibiting signs of depression, if one or both parents, or any close relative for that matter, suffers from the disorder, the child's mental health must be followed carefully.

Dr. David Shaffer, director of the Division of Child and Adolescent Psychiatry at Columbia University in New York City, notes that the biggest environmental causes for childhood depression is "repeated [marital] separations of parents," instability of child care or physical/sexual abuse. He also says that a recent move can be a trigger for suicide, if the child's anxiety is rigid.

"If there is a change, you must get professional support," Shaffer cautions.

Childhood depression is rare, according to Shaffer, who says that psychiatrists often over-diagnose prepubertal depression, when it's instead "probably a form of anxiety disorder." Rare, though, does not mean negligible. Shaffer notes that anorexia nervosa is also not that common, but both childhood depression and anorexia require immediate attention.

Dr. Fassler contends that childhood depression is difficult to diagnose as well.

"When we peel away the layers of the onion, we find depression," says Fassler. One reason mental health professionals need to look deep beneath the surface for childhood depression is that it's usually a secondary depression, meaning that it's often diagnosed with another disorder, such as attention deficit disorder or substance abuse.

So how can parents recognize childhood depression? Dr. Keith Harris, a psychiatrist in Huntington, has seen depression "in kids as young as 8 or 9." "There's usually a change in appetite and sleep patterns," says Harris.

But, the condition can be recognized as early as infancy, according to John Ochoa, a psychologist at Henry L. Stimson Middle School in Huntington Station. Though crying is common among infants, depressed infants tend to "smile less and cry more," Ochoa says. A baby who rarely smiles may be evincing early symptoms of depression. Symptoms for older children typically include school avoidance, bed-wetting and temper tantrums. (See sidebar, "What To Look For," on page 11 for a more detailed list of symptoms.)

The most obvious symptom is threatening or attempting suicide. Childhood suicide is even more rare than childhood depression. One reason is that children often do not fully understand mortality. Shaffer notes that children usually confuse acts that their parents scold them for with acts that are lethal. Children may act out suicide threats by swallowing analgesics.

"Some think a few Tylenol pills will kill them," says Columbia University's Shaffer, hastening to add that the urgency of the situation can't be judged by the method a child uses to attempt suicide. All threats and attempts warrant immediate attention. As Dr. Harris says, "If someone is making a gesture but the intention is to kill themselves, that's a high risk." Fassler finds that suicidal children do not know that they will never come back. Some might play video games, for example, and think that they have three lives left. Others who attempt suicide might not even be depressed, but delusional. A young girl might jump out the window because she believes she can fly.

And parents should not wait for suicide threats, experts warn. At the first signs of overwhelming sadness, withdrawal, serious personality changes, loss of appetite or the desire to sleep the day away, parents should take heed.

Adolescent Depression
One assumption that needs to be tackled is the age at which adolescence begins. Shaffer has observed children who are 10 years old who have the height of 12-year-olds. Thus, having reached puberty at an early age, they often have adolescent depression.

"Younger adolescents are somewhat more likely to present with physical complaints and/or signs of irritability in conjunction with depression," says Fassler. "They are also more likely to act impulsively when depressed."

Fassler also notes that depressed adolescents tend to have a change in sleeping patterns, a drop in grades, or morbid or suicidal thoughts.

Sometimes, they act out the morbid thoughts.

"I would cut myself on my arm with a scissor," Lucy recalls, "and that would take my mind off of the persistent mental anguish and send a soothing drug-like adrenaline through me and give me something else to focus on, giving me a sense of relief."

Although this is an obvious symptom, sometimes the signs are more subtle. Middle-school psychologist Ochoa suggests that parents look for "changes in friends or isolation from friends." Though hanging with the wrong crowd might not necessarily be a sign of depression, growing apart from positive friends who do well in school or involve themselves in healthy extracurricular activities can be a red flag. Shaffer tells parents to notice when their kids "compare themselves negatively to other kids." Even the classic high-school crush can be a trigger for serious depression. If the adolescent still thinks, after two weeks, that they will never love somebody other than the person they had a crush on who did not reciprocate the attraction, and the lovesick individual has other symptoms (failure in school, substance abuse), this can be a sign of depression. Do not underestimate the impact of a teenager's broken heart.

The Light At The End Of The Tunnel
Professional help from a school psychologist or a private professional is important at every stage. First of all, it's necessary for diagnosis. Personality tests used for diagnosis include the Beck Depression Inventory, Behavior Assessment System for Children II (BASC-II) and Personal Problems Checklist for Adolescents.

After diagnosis, Ochoa recommends a "good clinical interview with the child [and] family members." Fassler recommends a range of therapies depending on the individual case, such as individual, family or cognitive behavioral therapy.

Two types of antidepressants are used to correct the chemical brain imbalance. Selective serotonin reuptake inhibitors (SSRIs), such as Prozac and Zoloft, are used to correct imbalances in serotonin, whereas monoamine oxidase inhibitors (MAOIs) interact with norepinephrine as well as serotonin. MAOIs, which include Nardil, Parnate and Marplan, carry more side effects.

Though antidepressant medication can certainly be helpful, the FDA issued a "black box" warning label to health professionals in 2004 describing the increased risk of suicidal thoughts and behavior in children and adolescents being treated with such medications. The warning emphasized that psychiatrists and parents should closely watch children and teenagers who take Prozac, for instance, in case symptoms get worse.

Surprisingly, some doctors-Fassler, for one-do not scoff at alternative medicine.

Lucy, for example, has tried network chiropractic, a noninvasive form of chiropractic that is closer to Reiki than traditional bone cracking.

"I still see a therapist, but he's a chiropractor who performs semi-hypnotic touch therapy," she explains. "I believe it rearranges energy, poisons and patterns that have been instilled in me for so long."

Fassler sees benefits in these alternative treatments.

"Some forms of alternative medicine may be a useful component of treatment for depression in certain individuals," he says. "However, treatment is generally most effective when it's comprehensive and individualized to the needs of the specific person."

Though it might be difficult for families with depressed children, giving up should be the last thing on anybody's mind. Lucy now copes with her illness.

"It's a powerful force, but I think real personal truth is already programmed into all of us," she explains. "And that helps us realize right from wrong and, as a result, happy from sad."

She adds that she felt better sharing her story-proof that it's never too late.

"I still feel feelings of depression and anger," Lucy says. "I think the trick in battling this illness is truly knowing yourself, recognizing when it's building, and be active in combating it."

How To Help

* Look for danger signs. (See sidebar, "What To Look For," on page 11)

* Talk with your child.

* Seek support from and share coping techniques with trusted family members, relatives, friends or parents of other children affected by depression.

*Encourage your child to become involved, if possible, in healthy outlets-things about which he or she is passionate (such as hobbies or sports).

* Have a meeting with your child and the school psychologist.

* Talk to your child's pediatrician about treatment either with antidepressants or alternative approaches (chiropractic or exercise, for instance).

* Take your child to a private psychiatrist, psychologist or qualified counselor.

* Consider counseling for yourself and other family members who are affected by the child's depression.

* Take all talks and attempts of suicide seriously, no matter how absurd the attempt might seem (swallowing a few aspirin).

* Try taking your child to a cognitive-behavioral therapist or to an interpersonal-theory therapist (deals with people's characteristic interaction patterns, as in dominance and friendliness).

* Talk to a psychiatrist about antidepressants.

* If the psychiatrist prescribes antidepressants, constantly monitor your child. Ask your child if she is still depressed. If she talks about suicide, immediately contact the psychiatrist.

* Always listen to your child.

-Mo Ibrahim with Annie Blachley

By Mo Ibrahim. Article appears courtesy of the Long Island Press. All rights reserved.

See Related Article:ADHD and Depression: Over-Active Limbic System

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Conduct Disorder or ADHD : Neuropsychiatric Comparison Study

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Neuropsychiatric and neuropsychological findings in conduct disorder and attention-deficit hyperactivity disorder.

Neuropsychiatric and neuropsychological evaluations were performed in a pilot study of adolescents with DSM-III-R disruptive behavior disorders, including conduct disorder (CD) and attention-deficit hyperactivity disorder (ADHD).

The following comparisons were made: 1) CD comorbid with ADHD vs. CD only; 2) all subjects with ADHD vs. all non-ADHD; and 3) all subjects with CD vs. all non-CD.

The CD + ADHD group had increased left-sided soft signs compared with the CD group.

CD + ADHD subjects significantly underperformed CD subjects on several executive functioning measures, with no differences on Verbal IQ subtests.

Results are discrepant with previous findings of deficient verbal functioning in delinquent populations.

J Neuropsychiatry Clin Neurosci 1994 Summer;6(3):245-9
Aronowitz B, Liebowitz M, Hollander E, Fazzini E, Durlach-Misteli C, Frenkel M, Mosovich S, Garfinkel R, Saoud J, DelBene D, et al
Department of Psychiatry,
New York State Psychiatric Institute, New York.

Neuropsychiatric Comparison of Conduct Disorder to ADHD

Conduct Disorder, part 1

Les Linet MD, a board certified child and adolescent psychiatrist, discusses the distinction between oppositional defiant disorder, conduct disorder, and other disruptive behavior in children

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Dyslexia is a specific learning disability. It usually shows itself in problems with written language, particularly with reading and spelling. It is its own unique problem, or disorder, and it is not the result of low intelligence. There may be issues related to differences in how the eyes interpret information in some forms of dyslexia, but this is not the most common form.

The International Dyslexia Association, formerly the Orton Dyslexic Association, adopted the following definition for dyslexia in 2002. This Definition is also used by the National Institute of Child Health and Human Development.

Dyslexia is a specific learning disability that is neurological in origin. It is characterized by difficulties with accurate and / or fluent word recognition and by poor spelling and decoding abilities. These difficulties typically result from a deficit in the phonological component of language that is often unexpected in relation to other cognitive abilities and the provision of effective classroom instruction. Secondary consequences may include problems in reading comprehension and reduced reading experience that can impede growth of vocabulary and background knowledge.

Dyslexia is a problem with how the brain processes the signals that come into our brain, especially the symbols of our language. When the brain has problems processing these symbols of language through the visual processing pathways there are reading problems and a visual dyslexia. When the brain has problems processing these sounds of language through the auditory processing pathways there are other problems, auditory dyslexia.

Dyslexia is not related to IQ, and many with dyslexia are pretty bright.

Here is an interesting video from FoxNews featuring Dr. Harold Levinson, a psychiatrist and neurologist. He has his own opinions of what causes Dyslexia, and how to approach treatment. It's worth viewing.

The main points that Dr. Levinson makes in this video are:

  • There are lots of misconceptions about dyslexia. According to Dr Harold levinson, dyslexia results from an inner-ear syndrome and is characterized by many diverse reading and non-reading symptoms.
  • Dyslexia is not a disturbance of the "thinking brain" but rather is a problem with the inner ear and/or cerebellum.
  • Many with dyslexia are bright.
  • There is a high correlation with ADHD and other learning disabilities. Medications and nutrients for ADHD may be useful in helping those with dyslexia.
  • 15% of students may have dyslexia.
  • "What I found in examining thousands of patinets... is that balance, coordination, and rythym are off, even in athletes." Speech coordination or eye coordination problems. Accident prone, always bumping into things. The inner ear and cerebellum are responsible for these functions.
  • The National Institute for Literacy estimates that 30-50% of children have undiagonsed learning disabilities.
  • Dyslexia is not just genetic - it may be acquired at any age as a result of impairments to the inner-ear or cerebellum.
  • Certain nutrients can be used to improve function even in young children.

Here are some great articles on Dyslexia:

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Dyslexia Resources

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The International Dyslexia Association
New York Branch: www.nybida.org
33rd Annual Conference,
March 13-14
Marriot Marquis, Manhattan


Levinson Medical Center for Learning Disabilities

For a surprising list of celebrities and historical figures with dyslexia and related learning problems, see:

(website also has photos of celebs and more)

The International Dyslexia Association
Suffolk Branch

Recording for the Blind & Dyslexic
(Audio Services)

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Understanding Dyslexia Better

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Aoccdrngig to rscheearch at an Elingsh uinervtisy, it deosn't mttaer in waht oredr the ltteers in a wrod are, olny taht the frist and lsat ltteres are at the rghit pcleas. The rset can be a toatle mses and you can sitll raed it wouthit a porbelm. This is bcuseae we do not raed ervey lterer by ilstef, but the wrod as a wlohe.

When Words Collide: Understanding Dyslexia and its Promising New Treatments

By David North. This article appears courtesy of The Long Island Press. All rights reserved.

"What do letters have to do with words?"

This provocative quote, more of a challenge than a question, is posed by Merrill Loechner of Levittown. She was diagnosed as dyslexic at 19.

Imagine trying to read this article one word at a time, struggling to get to the end of a sentence, then forgetting what you just read. Imagine the frustration of not being able to trust your senses, as letters and words move and dance about. All the time. These are just two examples of challenges faced each day by many children and adults coping with dyslexia.

Up to 15 percent of the U.S. population has significant difficulty learning to read, according to the National Institutes of Health. People are born with dyslexia, and often, other family members have the disability. The National Center for Learning Disabilities estimates that almost 2.9 million school-aged children-5 percent of those in public schools-are classified as having specific learning disabilities and receive some kind of special education support.

Loechner says that as a child, she coped with her condition by learning to recognize words by their shape: "Letters make up words, but those words stand alone." She insisted, as do many children, that her mother read the same stories over and over (The Cat in the Hat, for example), and claims that the repetition helped her associate the sounds of the words she was hearing with the shapes on the pages. As a precocious grade-schooler, she says she was reading and enjoying novels by Agatha Christie, who coincidentally had a learning disability associated with dyslexia: dysgraphia, the inability to write legibly. Christie managed the condition by dictating her manuscripts to a typist.

Loechner managed to read and write well enough not to draw attention and concern from her parents and teachers. She says that she arrived as a student at Island Trees Elementary School already reading, so her condition went largely unrecognized.

"No one ever told me to 'sound out' a word," Loechner recalls. Her academic challenge was mathematics (dyscalculia).

"One can get by interpolating words and letters," she says, "but numbers require precision." She describes viewing numbers as one might see those popping Powerball numbers on the television Lotto drawings. Loechner admits that when she was a girl in the '70s and '80s, society may have given her a pass for her weakness at math. She was called out on her condition when a teacher reviewed a college placement test.

"He says, 'You have a good vocabulary, poorly executed,' typical of a high-functioning dyslexic," she tells the Press.

The Dyslexic World
Dysgraphia and dyscalculia are just two of dozens of related symptoms under the umbrella of dyslexia, according to Dr. Harold Levinson, a psychiatrist and neurologist in Great Neck. Others include dysphasia (impaired speech and verbal comprehension), attention deficit disorder (ADD) and hyperactivity disorders.

"In most cases, a person may reverse a 'D' or a 'B', or reverse 'saw' for 'was'," Levinson says, adding that in those cases, people understand words, and compensate by using context. More serious conditions will find people struggling to keep track of words in a line, or they'll skip words or whole lines.

"Sometimes letters will wiggle, or they'll take on words one letter at a time; by the time they finish the word, they've forgotten what preceded it. Some can be distracted by sounds; some are light-sensitive, too," Levinson explains.

Imagine having letters moving, or tunneling-then also strobing and flickering under fluorescent lighting!

Some children battling dyslexia will become distracted, frustrated and angry.

"It's no question many dysfunctional mechanisms are also coupled with anxiety," Levinson explains. These many conditions, and difficulty with memory and context, can diminish confidence and lead to questions about a person's intelligence. "The delay in processing information can derail the whole learning process," says Levinson. That's terribly unfair, considering the amount of brainpower and adaptation required for coping with dyslexia.

Intelligence is not an issue for Loechner, who is now a marketing manager for a laboratory products company in Connecticut.

Her intellectual capacity is verified by her being a (literally) card-carrying member of the high-IQ society, Mensa. Her experiences, including her apparent success in learning to use a "whole-word recognition" process, are not regarded as typical; but she did adapt and was regarded as a gifted reader. Another well-known dyslexic was Albert Einstein. Dyslexia certainly doesn't hamper creativity either, as demonstrated by dyslexic actors Cher, Harrison Ford, the late River Phoenix and Sylvester Stallone.

Why Tommy Can't Read
The Martins (their names have been changed) of Lynbrook describe helping their now 8-year-old son Tommy navigate the educational system.

"In preschool he had some trouble with his alphabet, and with numbers," explains Mrs. Martin. "We thought it was a visual problem, but the teachers said he was OK, and about equal in development with the others."

When asked if their son had attempted whole-word recognition, as Loechner did, the Martins say their son showed little or no interest in books.

"We would read to him, and he seemed to enjoy listening, and he could tell us about the stories, but he'd never pick up a book and bring it to us; he wouldn't initiate it [a reading session]."

In first grade, Tommy seemed to do well with the concept of phonics.

"He knew his consonant sounds, but he had trouble reading," says Mrs. Martin, describing the problem as more than just reversing 'Ds' and 'Bs'. "He'd also get 'Zs' and 'Ss' backwards and many numbers, all except 1, 0 and 8 [symmetrical shapes]." The couple took their son to Hofstra University for testing.

"We were told he was learning disabled, but weren't given any specifics," says his mother. "In fact, we were told the phonics I taught him confused him!"

When their son entered the second grade, another teacher suggested testing, this time through the Lynbrook School District. Those tests included copying shapes (to evaluate his visual-motor function), matching shapes to test his perception, and a visual-memory procedure (similar to the game "Concentration"). There was also a reading component.

"If he was read to, he'd remember and test very well," says Mr. Martin. "But if he read himself, his 'time' was below average and he tested poorly. Smart people compensate; he did very well in some things, so he averaged out to 'average.'" The Martins were also told he was too young for a diagnosis of dyslexia. Ironically, they later concluded they had waited too long.

Their son stayed in regular classes with some support.

"But at age 8, he started becoming anxious about comparisons with other kids," recalls Mrs. Martin. "A classmate scolded him-'You can't read!'" Tommy continued with occupational therapy and a phonics program, but wasn't making progress. A friend told Mrs. Martin about a nephew diagnosed with dyslexia, who appeared to be making progress working with Levinson.

"We saw his book, Smart But Feeling Dumb, and we finally felt someone knew what we were experiencing," says Mr. Martin. "[Our son] absorbs vocabulary and can use it, sometimes eloquently, but otherwise he had all this information in his head, but he couldn't get it out."

Dr. Readgood
Levinson began his research on dyslexia while working for the Bureau of Reading Services for the board of education in New York City. His experiences working with hundreds of children from a wide range of ethnic, social and economic backgrounds called into question the traditional concepts of dyslexia. Some medical minds had theorized that dyslexia was the result of damage to portions of the brain, or the result of emotional problems; perhaps parents pushed their children too hard.

"In order for a theory to work, it has to address all cases," says Levinson. "Many students were quite bright, and aside from their symptoms, quite happy." Where he found no evidence of "brain trouble," he frequently found motor coordination problems; children were accident-prone, or had trouble skipping, or holding crayons, and, as expected, had difficulty keeping their place on the printed page. His observations led him to another theory.

As part of his testing regimen, Levinson applied a standard neurological exam, described as similar to a field sobriety test. He found that 75 percent of the patients he tested had significantly impaired balance and coordination. "Astronauts cope with a condition called 'space dyslexia,'" he explains. "It's addressed with anti-motion-sickness medications."

Levinson says that for patients previously indicated as balance/coordination impaired, as many as 85 percent showed improvement when prescribed medication to stabilize the inner ear. As an added benefit, patients reported a decline in their anxiety.

Comparing current research about dyslexia with historic advances in the perception of medical conditions, Levinson says, "Years ago, before diabetes was understood, patients and doctors would try to address each symptom-vision, heart, circulation-then we found it was one condition, an insulin condition." There are many conditions under the umbrella of learning disorders, and Levinson says there is no one solution for the range of conditions encompassed in that diagnosis. He admits that the possible link between ear infections, mononucleosi, and other balance-related conditions to dyslexia is not completely understood. But think about it: If you were whirled about and dizzy, could you read this article?

Seeing Things Clearly
Levinson's theories are controversial, just not at the Martin home. The Martins say that after five months of treatment on meclizine, an antivertigo drug, their son is showing improvement. Mrs. Martin says, "He's doing much better and it was the best autumn we had for his allergies in years."
"It's so sad so many kids aren't being diagnosed, when they could be getting help," says Mr. Martin. "Especially at [Tommy's] age, when they're learning how to learn. For now, he's getting the basics; later, he'll be evaluated on content-how he applies what he's learning."

Current technology is also reason for optimism.

"If he had to have this condition, this is the time," says Mr. Martin, who cites indexed and reviewable CD-ROMs, computer spell check and assisted technologies on the horizon, such as voice-recognition systems and word-prediction programs. "[Tommy] wants to go to college, he's set on it; he wants to be a zookeeper at the Sydney Zoo. He loves the hands-on aspects of science: If he can hear it, and touch it, he'll absorb it. He understands concepts about triangular bridge-construction, biology, botany, cells, DNA, photosynthesis...he was even confident enough to correct a teacher about reptiles having scales, not skin." Their son continues to receive help through occupational therapy and with phonics.

Back on the whole-word recognition front, Loechner is also enthusiastic about the role computers play in improving her situation.

"Spell check lets me use my entire vocabulary," she says, "not just words I can 'draw.' But I have to have my copy reviewed to be sure the correctly spelled word is the correct word !" Text style is an issue too, even in romance. At dating websites, she finds writing in all caps creates words in unfamiliar shapes, while messages in all lower case makes the suitor appear "dumb and lazy." Mister Right must know how to use a shift key.

By David North. This article appears courtesy of The Long Island Press. All rights reserved.

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Tourettes Syndrome

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Tourette's Syndrome is very close, in terms of genetics, to ADHD. As a result, those with Tourettes and those with ADHD may share a lot of symptoms, and it is common for children or teens with Tourette Syndrome to be misdiagnosed as having ADHD. When this happens, typically the child or teen is started on stimulant medication, and sometime within 18 months the tics associated with Tourettes will begin.

Here are our thoughts on this from our reply to a letter from a reader:

Dear Dr. Cowan,

I am a School Psychologist working for a public school district in Kentucky. Part of my job includes working with students exhibiting ADHD characteristics. When I assess for ADHD (but of course, I cannot diagnose), I include classroom on-task/off-task observations, IQ/achievement screening, Conners' rating scales, developmental history, parent questionnaire including DSM-IV criteria checklist and teacher questionnaire including DSM-IV criteria checklist. As part of the screening, I provide recommendations for both the parent and teacher to help the child be more successful. One of my recommendations is including your website for reference, thank you! I have gotten good feedback from parents who have researched your website.

I recently completed an ADHD screening on a 2nd grade student who showed significantly high ratings for ADHD Combined Type, according to parent and teacher rating scales and questionnaires. The parent followed-up by going to the doctor and the doctor diagnosed the student with ADHD. The parent started him on medication last year, but the student began to show tics. The parent and doctor changed medications, the tics continued and even worsened. The child's doctor has referred the parent to a
neurologist. She has not yet seen the neurologist, but expressed her great concern to me.

So, here is my question...do you know of any link of ADHD medications causing tics in children, or could ADHD and Tourette's Syndrome be a comorbid condition that is increasing in prevalence? I have tried to do research on the internet about this but I am not having much luck. This is not the only child that I have come across with this concern. Any information you can provide to me that I can pass on would be helpful.

Thank you so much,

C.L., Ed.S.
School Psychologist

Thanks for the kind words of support. I appreciate it!

re: the Tics

There are a lot of kids, diagnosed with ADHD, that start tics. Usually in the first 18 months of beginning a stimulant medication. Stimulants do a lot of things, mostly good, but some bad. One is that it lowers the
"seizure" threshold, so kids with underlying seizure disorders won't do well. It also seems to lower the "tic" threshold in kids, so kids with underlying tic disorders begin to show the tics.

The question that's been debated for a long time is, "Does the child have tourettes syndrome? Or is there something in the medication itself that causes the tics?" The weight of evidence that I've seen falls to the child having the TS gene, and the ADHD is "secondary" to the TS. In other words, the child likely has TS, but not all of the symptoms have yet appeared, only the ADHD-like symptoms. But with time they might have appeared. But the use of stimulants accelerated the process.

Dr. David Comings (Commings?) has a great book "Tourettes Syndrome and Human Behavor" (Hope Press) that I'd highly recommend. Its 20 years old now, but a really interesting read on this topic.

However, others are starting to think that it is really the stimulant medication itself that is the problem. Stimulants can cause heart problems, so why not tics? And, their perspective is hard to argue with. I've worked successfully with over 900 students who really did well with stimulants, and have seen only two bad reactions to the meds (but we were really careful, always starting with really low doses, etc....). But there is
mounting evidence that they can cause a lot of problems with children and teens.

Sometimes switching from a stimulant to an antidepressant can help some of the ADHD symptoms but without the tics.

I'd try our diet for 30 days, no meds. Just clear the system. Then try the Attend and Extress (and maybe Memorin) for 30 days. If they work, great! If not, the family can get their money back, and they can then try the next level of medications.

The neurological consult is certainly a good idea. Lots of things can cause tics, not just meds or TS. The most important question the neurologist can ask in his assessment of possible TS is, "does TS run in the family?" Or, is there a family history of alcoholism, drug addiction, or OCD? (as all of these are highly correlated with the TS gene).

I hope this is at least a bit helpful. See if you can get Commings book at your local library. He's a geneticist at the City of Hope in Los Angeles (may be retired now?) and he spend years studying TS and ADHD in kids. Its worth the read.

Doug Cowan, Psy.D.

In this section on Tourette's Syndrome we will collect articles to help you, as parents, be better able to discern the difference between ADHD and Tourette Syndrome.

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Tourettes Syndrome Overview

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A defining criterion of Tourette is symptoms-involuntary tics-that start between age 2 and age 15. Anyone who has Tourette first got it as a child, probably during school, when peers can be ruthless to anyone out of the mainstream. Recent studies show that the greatest frequency and severity of tics occurs for most children around middle school. It's a terrible time to be twitching and barking.

Yet the roughly 1 percent of students who have Tourette syndrome are, aside from their tics, no different than other students. The condition has no impact on intelligence or athletic ability. Even tics themselves are not unique; some 20 to 25 percent of children develop a physical tic or tics during their school years that, in most cases, go away. When the symptoms last more than a year, and audible tics join the physical ones, it's probably Tourette syndrome-TS to the cognoscenti.

Our Children's Brains Part VI: Tourette Syndrome

It's No Joke To The Kids Who Have It

By E.H. Santiago in the Long Island Press. Used by permission.

Tourette syndrome is probably the comedy world's all-time favorite affliction, because while obscenity is always funny, involuntary obscenity is hilarious.

The world's first known case, first described back in 1825, involved a fancy and influential French noblewoman, the Marquise de Dampierre, who lived in horror of her own eruptions into vulgar blasphemy among high society. Comedy gold. Right?

Except that Tourette is no joke to the kids who have it.That's right: kids. A defining criterion of Tourette is symptoms-involuntary tics-that start between age 2 and age 15. Anyone who has Tourette first got it as a child, probably during school, when peers can be ruthless to anyone out of the mainstream. Recent studies show that the greatest frequency and severity of tics occurs for most children around middle school. It's a
terrible time to be twitching and barking.

Yet the roughly 1 percent of students who have Tourette syndrome are, aside from their tics, no different than other students. The condition has no impact on intelligence or athletic ability. Even tics themselves are not unique; some 20 to 25 percent of children develop a physical tic or tics during their school years that, in most cases, go away. When the symptoms last more than a year, and audible tics join the physical ones, it's probably Tourette syndrome-TS to the cognoscenti.

Of four children with Tourette syndrome contacted for this story, only one was willing to be named-even though three of the four are "out" among their peers, to varying degrees. One parent of two children with TS says that both were open in talking about the condition with their peers in grade school, but that "around fifth grade they got more private."

Matthew Hirsch, of Massapequa, is 10 years old. He plays baseball and basketball and football. He enjoys video games. He also makes funny noises.

Diagnosed at a relatively early age, Matt is intimately aware of his Tourette ups and downs.

"In first, second grade it started out pretty bad, I'd get most of the attention and it felt kind of weird," he says. "It was harder to make friends and I had a little trouble with that, but it's okay now."

Matt's TS could hardly be more public. "The whole grade now knows, they're used to it," he says. He was featured this month in an HBO special called "I Have Tourette's But Tourette's Doesn't Have Me." He notes with some chagrin that his part was relatively small. He had been up for the narrator's role, but at the time of filming he "wasn't tic-ing all that much"-not enough for the producers, at least.

The Hirschs, according to his mother Cheryl, were "extremely fortunate" to find "wonderful, very supportive" staff at Unqua Elementary School. "My son has had a string of great teachers," she says, confirming that Lucille Marandino, who Matt singled out, was wonderful. But not every school district has the resources or understanding needed to handle TS students.

Jane Smith (not her real name), as her father Tom describes her, was an ordinary kid right up until the summer before starting sixth grade.

"She went to bed one night and woke up tic-ing away," Tom Smith says. In retrospect, he remembered that there had been episodes of blinking and stuttering when Jane was 7 years old, but they had passed.

Ever since then, at the beginning of each school year, the Smiths put together information packets on Tourette for each of their daughter's teachers. Still, the school experience has been a mixed bag. There is some affectionate teasing, but there has also been taunting and bullying. And that's just the students.

"The kids are better than some teachers," Tom says. The lack of support from the adults they're supposed to turn to can be more confounding to TS children than teasing itself. At the same time, when it comes to TS, ignorance prevails.

"We feel very sorry for teachers," says Judit Ungar, president of the Tourette Syndrome Association, Inc. (TSA) "They have 30 to 35 kids in a class, many with special needs, and they don't often have the knowledge they need to deal with Tourette syndrome."

Whether or not comedians and the media are at fault, Tourette is widely misunderstood. Outbursts of obscenity like the Marquise's, technically called coprolalia, is one of the rarest symptoms.

Many adults believe that the behaviors can be controlled, that the student can "just stop" if she or he wants to. One Long Island teen, who we'll call Tina because her classmates do not know about her condition, was at a camp event one summer, and her head was twitching. A counselor came over and told her to stop because it was distracting to the kids behind her. When she did not, the counselor repeated the instruction.

"I can't," the girl replied, "I have Tourette syndrome."

"No you don't," said the counselor, grabbing her head to hold it still. "Stop making fun of disabled people."

Not just the lay public, but even doctors are confused. Tourette syndrome is easily misdiagnosed. There is no lab test or diagnostic image that reveals it. Patients are often able to temporarily suppress a tic until the doctor looks away or even until they get home. Some patients have learned coping mechanisms, such as disguising tics with an apparently purposeful movement, such as brushing aside hair. Tics that involve sniffing or blinking may suggest allergies. And tics are characteristic of many conditions, including mental retardation, autism and even simple nervousness.

If the world is ill informed, Long Island is headquarters of the effort to change that. In 1972, TSA was incorporated in Bayside, Queens. TSA is a national nonprofit that promotes both public and scientific understanding of Tourette syndrome through educational outreach, publishing, political lobbying and funding research. It was founded at the kitchen table of Eleanor and Bill Perle by three Long Island families who had children with Tourette and who figured they couldn't be the only ones. At the grassroots level, Jen Zwilling of Brookville is co-founder of the TSA's National Youth Ambassador Program, which sends students with Tourette to other schools to talk about their condition. Long Island writer Marcia Byalick, who has a friend whose child has TS, tried to reach the student audience with a young adult novel about a teen with TS. And parents are right behind the TSA in promoting awareness.

"My personal mission is to educate people about this," says one mother. "I worry that he'll always be 'that weird kid.'"

Tourette syndrome is characterized by multiple physical and audible tics that first appear during childhood or the early adolescent years, wax and wane, and last more than a year. Typically, it starts with a simple facial twitch, which is replaced or supplemented by other, perhaps more complex, twitches involving the body. Auditory tics typically start later, and can begin with something as innocuous as coughing, eventually progressing to barking, full sentences or coprolalia.

Tourette spasms aren't constant. They come and go over time in fractal patterns. Although they often sleep badly, TS patients don't normally tic in their sleep. In 1995, Manhattan neurologist Oliver Sacks described a Canadian surgeon with severe TS, whose tics disappeared in the operating theater. Hence the tics can, to a degree, be controlled.

"Sometimes I try to hold it in," says Matt Hirsch. "If I'm really focused and concentrating then it doesn't happen."

Adult TS patients describe the approach of a tic as an urge that grows more compelling, like a tickling or itch that demands to be scratched-and the only relief is the tic. While many patients, especially as they mature, are able to control their tics temporarily, eventually they've got to release the building tension. Teens who spend all day suppressing their involuntary spasms may come home and explode with all the day's tics at once.

Just like toddlers have to learn the signs that mean potty time, children with TS are often not aware of the sensation that precedes the tic. They may not even be aware that they act in an unusual way at all. Hence younger children have a much harder time disguising their symptoms.

Tina's case is more or less typical. She "woke up one day" in kindergarten, her mother says, with incredible tics around the eyes. Her mother started taking her to psychologists and "reading,
reading, reading." When Tina was still tic-ing a year later, her neurosurgeon made the diagnosis of TS.

In her grade school days, Tina's peers were not kind. They would say, "What are you doing? Stop that." As she grew older, Mary became more aware of her tics and better able to control or disguise them. Now an adolescent, most of her tics are invisible-spasms in the stomach or body parts that are covered by clothes. She is a poised, articulate, athletic, social middle schooler-and none of her peers know she's got TS. But they do sometimes joke about Tourette, usually with some "%$*##," in the lunchroom.

The "typical" case doesn't begin to address the enormous range of TS, which is the most severe of tic disorders. In addition to coprolalia, there is echolalia, the repeating of another's words, and echopraxia, the aping of another's movements. And some tics are far from the simple eyebrow spasm. Jane Zwilling, vice chair of the L.I. chapter of the TSA, recalls one young middle-school boy (boys suffer tic disorders at least three times as much as girls) whose TS induced him to periodically stand up in class and shout, "I've got a chicken in my pants!"

Tourette's Syndrome : An Overview on Tourette's

It's easy to see why some teachers might be inclined to see that as "acting up." Yet that boy's tic is no more voluntary than a simple eye blink, just more elaborate.

"There are always teachers who say, 'They could stop if they wanted to,'" Tina's mother says.

That's just one of the educational problems that TS poses. While the condition itself doesn't harm the brain or body, Tourette sufferers face a host of additional complications that can have
significant impact on their ability to lead normal lives. Other conditions, such as obsessive-compulsive behavior and sleep disorders, but particularly attention deficit hyperactivity (ADHD), often come with Tourette. Tics can interfere with studying; an eye tic, for example, can make it hard to read. The teasing and bullying of peers leaves many TS children with poor self-esteem, and many adults, like Tina's camp counselor, aren't much help. Dealing with the tics all day, even if they're not visible to others, can be physically exhausting.

Tourette is not one of the disabilities covered by the federal Individuals with Disabilities Education Act (IDEA), but the TSA and other advocates are working to change that. In the meantime, some states, including New York, do include TS in the category of "other health impaired." Tourette-afflicted children can also get some accommodations in school via Section 504, a federal civil rights law requiring that impaired students receive special education services.

"In some cases, a TS child could be better served by a 504," explains John Lynch, Executive Director of Pupil Services for the Northport-East Northport district, where each school has periodic "Disability Awareness Weeks" to promote sensitivity among the students. He notes that they have to be especially careful not to compromise the confidentiality of any one student.

"[TS] is not that prevalent, so you probably would have people who require some training," he says, comparing Tourette to autism a few years ago. "When [autism] first came out, no one really knew much about it. It's only in the last five to ten years that it has really come [into the public consciousness]."

That's why the TSA makes such strenuous efforts to spread the word. Each year, the group hosts a free, full-day conference for educators. This year's will be held on May 19 at the Long Island Marriott in Uniondale. The group also has touring educators who talk at schools across the country. The youth ambassador program is working to recruit even more students to speak about the condition. Even the medical community gets re-education from the TSA.

"Tourette syndrome is one of thousands of illnesses, disorders, syndromes [doctors] learn about," says Ungar. "So they don't get much time on each one."

What causes Tourette syndrome? Researchers still aren't certain-the word "syndrome" applies to a set of symptoms occurring together from a common cause-but they are closing in on some answers. A neurological disorder that is sometimes inherited, TS appears to interfere with the processing of dopamine and serotonin in the basal ganglia of the brain. Last October, Yale University researchers claimed to have identified a gene that causes Tourette when mutated. But even that is considered only a partial answer, since it appears to apply only to some cases of TS.

Given the confusing nature of TS manifestations, it's no surprise that just about every treatment imaginable has been tried. Georges Gilles de la Tourette, the 19th century French physician whose descriptions of patients with these symptoms led to the condition being named for him, was an early practitioner of what we now call alternative medicine, such as suspension, vibration and hypnotherapy. More recent treatments for TS have included, most commonly, psychotherapy, group therapy, hypnosis, bio-feedback, chiropractic, diets, vitamins, herbs, and, of course, many, many drugs.

Most of these treatments are useless, although some drugs have proven effective in easing symptoms-often by as much as 90 percent, according to the TSA. Haloperidol (Haldol) works for 60 to 90 percent of patients, the group says. Similar, less well-known pharmaceuticals such as clonidine, guanfacine, risperidone, ziprasidone, clonazepam, and selective serotonin reuptake inhibitors (SSRIs) can also reduce tics. Even Botox has proven useful.

But none of these drugs was developed for TS. All are for other ailments-depression, high blood pressure or anxiety. Furthermore, the drugs used to treat TS aren't specifically approved for use in children. Dosage is more art than science, with even children of similar age and weight having different reactions.

Even so, Dr. Samuel H. Zinner, assistant professor of pediatrics and developmental-behavioral pediatrician at the University of Washington Center on Human Development and Disability, recommends that physicians treating Tourette periodically taper off and/or discontinue medication. It's both empowering and reassuring for the children and their families, he believes, and, because the tics come and go over time, it makes sense from a medical standpoint.

Tom Smith says that his daughter takes anti-hypertensive medication, but in a very low dose. "I'm not really a drug person," he says. "And the tics wax and wane naturally, so you don't even know if the medications are helping."

But in all the confusion there is some clear good news for those with TS and their families. J

Just this month, researchers at Britain's University of Nottingham published results that suggest Tourette patients have more, not less, neurological control than the general population. Lead researcher Dr. Georgina Jackson hypothesized that this is because TS patients develop exceptional skills in suppressing involuntary movements through sheer brain power.

Tourette isn't fatal, it can be treated, and it doesn't have to interfere with normal life.

"It's not as much of a challenge as it used to be," says Matt Hirsch, who seems more mature than your usual 10-year-old. "All my friends, when I talk about it now, they say 'Oh yeah, I forgot you have that.'"

The TSA (718-225-2999; www.tsa-usa.org) has volumes of information, and video clips showing some common tics. Parents who suspect their child has Tourette should consult a pediatric neurologist.

By E.H. Santiago in the Long Island Press. Used by permission. Article courtesy of the Long Island Press. Long Island Press & LongIslandPress.com, All rights reserved.

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