Excerpt: 'The Autism Sourcebook'

Sept. 29, 2005 — -- At the age of 2, Jake Exkorn's parents were told their son had autism. But two years later, Jake had fully recovered from autism. His mother, Karen Siff Exkorn, credits an intensive form of therapy called Applied Behavior Analysis for the dramatic turnaround.

Almost immediately after diagnosis, Jake started 40 hours a week of grueling one-on-one therapy. ABA is expensive but called the "gold standard" of therapy for kids with autism. Still, only a small percentage of kids "recover" from an autism diagnosis, even with ABA therapy.

Based on her experience, Siff Exkorn has put together an exhaustive book on autism called, "The Autism Sourcebook: Everything You Need to Know About Diagnosis, Treatment, Coping, and Healing."

You can read an excerpt below.

For more information on autism, click here to visit www.autismspeaks.org.

Part I: Diagnosis

At his second birthday party, we found our son, Jake, lying facedown in the driveway,his cheek pressed into the gravel. He did not look at us or talk to us. It was asif we -- his own mother and father -- were not there.

Two weeks later, Jake was diagnosed with autism.

In the first seventeen months of his life, Jake hit every developmental milestone:he crawled, he walked, and he talked. He was within the age-appropriateweight and height percentiles. By all accounts, he was a typical child. And then,over a six month period, Franklin and I watched as our once active and talkativetoddler gradually developed into a lethargic and silent little boy. It was as if, oneby one, all of the circuit breakers in his brain were clicking off.

Something was affecting Jake's overall development. His coordination wasoff. He couldn't keep his balance while running or going down the slide. His behaviorchanged. Jake no longer showed any interest in playing with otherchildren -- he hardly even played with his toys. Apart from turning light switcheson and off and opening and closing all the doors in the house, his favorite activitywas lying on the floor and staring. He also began to have full-blown, horrifictantrums that looked and sounded like nothing I'd ever seen -- complete withshrieking and sobbing that caused him to hyperventilate. But aside from thetantrums, Jake was quiet. And honestly, I think what disturbed us the most washis silence. Our house used to be filled with the sounds of his laughter and hisraspy, little voice. But the house became so much quieter as Jake's vocabularydwindled to only a few words. Then, shortly after his second birthday, Jakestopped speaking entirely.

Franklin and I were alarmed and confused. We tried talking more, filling inthe silence with empty chatter in the hopes of motivating Jake to start talkingagain. But nothing happened. Then we tried talking less, thinking that maybeJake needed more space to express himself. Still nothing. Jake stopped respondingin general, not even looking at us when we called out his name. The affectionateboy who freely gave us hugs and kisses was gone. Now, Jake's whole body stiffenedwhenever we tried to hug him. He could no longer tell us what he wanted -- noteven by pointing. Jake would shake his whole hand in the direction of the kitchencabinet to let us know that he was hungry. We'd end up pulling out box after boxof cookies, crackers, and snack foods to try to figure out what he wanted. Sometimeshis grunting indicated that we'd found the right snack. Other times hissobbing indicated that we hadn't, usually after we had emptied out the entirecabinet. We just couldn't figure out how to give our son what he wanted -- whether it was food or anything else.

"He's a boy. Boys develop later than girls," our family pediatrician repliedwhen I expressed our concerns. For each of Jake's symptoms, he had an explanation.Jake didn't speak because he was either shy or obstinate. He didn't play orbehave like other children because all children are different. "You should stop beingso competitive by comparing him to other children on the playground," hetold me. When I was concerned that Jake's tantrums bordered on hysterics, thepediatrician said, "Move the furniture so he won't get hurt." He repeatedly toldme not to worry, chalking up Jake's behaviors to the "terrible twos."

But I did worry. Something wasn't right with Jake. He was drifting furtherand further away from us.

For months, I listened with gnawing uncertainty to the pediatrician. Then,one day, I stopped listening. I was Jake's mother, after all, and I knew my own sonbetter than anyone -- including the doctor. That's when I started listening to whatmy instincts had been telling me for months. I took Jake to another doctor andanother one after that. When I finally got to the bottom of it, when I finally foundthe right doctor to tell me what was the matter with our son, I heard the wordsthat no parent wants to hear: "Your son has autism."

At that moment, I wished nothing more fervently than that our family pediatricianhad been right all along. ...

The Many Faces of Autism

His parents called Nathan their "gentle giant." At age six, he was big forhis age but wouldn't hurt a fly.He appeared to be shy and fearful at all socialactivities -- from playing with other kids to looking his mom and dadin the eye. Nathan's favorite activity was jumping on the trampoline all byhimself in his backyard. He seemed to live in a world of his own and hadnever uttered a word in his life.

At age four, Michael could tell you everything about the life cycle and migratorypatterns of the monarch butterfly. He'd even taught himself aboutphotosynthesis. Although clearly intellectually gifted, Michael could nothold a two-way conversation. Instead, he preferred to lecture nonstop abouta subject with which he was obsessed, such as butterflies or train schedules.

Blonde-haired, blue-eyed Samantha, age three, was a bundle of energy -- always racing aimlessly around the house and flapping her hands. She hadan uncanny habit of echoing people's language -- using the exact samewords and intonation -- and could recite entire passages from a Disneyvideo after having seen it only once.

At age two, Jake, who used to be messy and throw his toys around likemost kids his age, was now lining up his trains in perfectly neat rows. Hewould often take a train, lie down on his belly, and push the train on animaginary three-inch track, his eyes carefully following the wheels of thetrain. He could entertain himself in this manner for hours.

These children seem so different, yet they have one thing in common:They were all diagnosed with autism.

A Brief History of Autism

The word autism comes from the Greek word autos, which means self. Eventhough autism seems like a fairly new diagnosis, some of the earliest publisheddescriptions of behaviors that resemble autism date back to the eighteenthcentury. It wasn't until 1911 that Swiss psychiatrist Eugen Bleuler coined theterm autism in his work with schizophrenic patients. He observed that his patientswere isolated from the outside world and extremely self-absorbed.

Dr. Leo Kanner and Dr. Hans Asperger are considered the pioneers in thefield of autism as we know it today. In the early 1940s, unbeknownst to eachother, both men conducted research in which they described children asautistic -- not in reference to schizophrenics, but to what we now know as themore classic definition of the word. Kanner conducted his research on childrenin the United States, Asperger in Austria. It's a remarkable coincidence thatthese studies happened to occur at the same time in different parts of the world,and that both researchers used the word autistic to describe the children in theirstudies.

Kanner's definition of autism was referred to as early infantile autismor childhood autism. Now we just use the word autism. Kanner's explanationis what we would consider to be the classic definition, where children displaysymptoms of impaired social interaction, lack of imaginative play, and verbalcommunication problems. Asperger described children with similar traits, exceptthat his children seemed to have higher IQs and precocious languageskills -- they spoke like little adults. In the 1980s, Dr. Lorna Wing, psychiatricconsultant for the National Autistic Society in the United Kingdom, coined theterm Asperger's Syndrome to differentiate the condition from classic autism.

What Does Autism Mean Today?

The word autism is the catch-all term that many people use when referring tothe spectrum of autistic disorders. The more current term for autism is ASDs,or Autism Spectrum Disorders, and includes the following five diagnoses:Autistic Disorder, Asperger's Disorder, Childhood Disintegrative Disorder (CDD), Rett's Disorder, and PDD-NOS (Pervasive Developmental Disorder-Not Otherwise Specified).

Many people used to subscribe to the myth that everyone with an ASDbehaved like the Dustin Hoffman character in the movie "Rain Man," who hadthe uncanny ability to remember complex combinations of numbers butcouldn't perform simple tasks like making toast. Or people subscribed to themyth that all children with ASDs were aloof and unresponsive, rejected hugs,and never showed affection. We now know that ASDs are much more complex,with a variety of symptoms and characteristics that can occur in differentcombinations and in varying degrees of severity.We also know that eachindividual with an ASD is unique, with a distinctive personality and individualcharacter traits.

An ASD is not a disease, such as pneumonia or high blood pressure. (A diseaseis defined as an illness or sickness where typical physiological function isimpaired).An ASD is a developmental disorder -- a condition in which there is adisturbance of some stage in a child's typical physical and/or psychological development, often retarding development.AnASD shows up in the first few yearsof a child's life. It can affect a child's abilities to communicate, use his or herimagination, and connect with other people -- even parents and siblings.

As the name implies, ASDs are spectrum disorders, ranging from mild tosevere. A child on the severe end of the spectrum may be unable to speak andalso have mental retardation. A child on the mild end of the spectrum may beable to function in a regular classroom and even reach the point where he orshe no longer meets the criteria for autism. No two children with ASDs arealike, even if they have the same diagnosis. One child with an ASD may benonverbal and have a low IQ.Another child with the exact same diagnosis mayhave an above-average IQ. A third child may be verbally and intellectually precocious.The terms high-functioning and low-functioning are sometimes usedto describe where a child is on the autism spectrum.

You can't tell that a child has an ASD simply by looking at a picture of himor her. A two-year-old with an ASD can be the same height and weight and bejust as adorable as a "typical" two-year-old. ("Normal" is not used in this bookbecause it is a relative term, and one that is not widely accepted in the ASDworld. The Autism Network International introduced a new term, neurologicallytypical or NT, to describe people without ASDs, which has been shortenedto typical as the acceptable term in many publications).What distinguishesa child with an ASD from a typical peer is what you can't see: the brain. This iswhy ASDs are known as invisible disabilities.

Because there is no medical test for an ASD, a child is diagnosed based oneither the absence or presence of certain behaviors and skills. For example, if achild is still not speaking by the age of three, that is considered the absence ofan age-appropriate behavior. If a three-year-old child engages in odd or idiosyncraticbehavior, such as excessive hand flapping, grimacing, or aimlesslyrunning back and forth across a room, that may be an indication of a developmentaldisorder.

What Are Early Signs of ASDs?

Most parents notice that something is not right with their children when thechildren are two or three years old. In some cases, parents pick up signs evenearlier, when their children are in infancy. They may notice that their babiesdon't look at them or seem to recognize familiar faces. Perhaps their babiesdon't cry when they leave the room, exhibit anxiety around strangers, makebabbling sounds, imitate gestures such as clapping and pointing, or enjoyplaying games like peekaboo -- all signs of a typically developing infant.There's no single personality type that represents the model of an ASDbaby. Some parents of children with ASDs look back and describe their childrenas having been angels when they were babies, hardly making a peep anddemanding very little attention. Others describe their children as screamers.Still others describe their babies' behavior as typical -- nothing out of the ordinary.

According to the National Institute of Mental Health (NIMH), some possibleearly indicators of ASDs include the following:

does not babble, point, or make meaningful gestures by one year of age

does not speak one word by sixteen months

does not combine two words by two years of age

does not respond to his or her name

loses language or social skills

avoids eye contact

doesn't seem to know how to play with toys

excessively lines up toys or other objects

is attached to one particular toy or object

doesn't smile

at times seems to be hearing impaired

Parents may also notice that their child doesn't meet the physical, mental,language, and social developmental standards that most typical children reach.Their one-year-olds may not imitate their actions when they clap or wave, orrespond to their smiles, as most one-year-olds do. Their two-year-olds maynot be able to understand simple two-step instructions ("Go get your cup, andput it on the table.") or do such things as point to basic body parts (nose, ears,or eyes), identify objects, ask simple questions (or even speak at all), engage incommon physical activities (jumping, running, or climbing), or draw circlesand lines on paper -- as most typical two-years-olds do. Typical three- andfour-year-olds drive their parents crazy with constant "Why?" and "What?"questions, eagerly answer simple "Where?" and "Who" questions, enjoy picturebooks and being read to, and like to play with other children, whereas mostthree- and four-year-olds with ASDs do not. As toddlers, children with ASDsmay not show their curiosity by leaning out of their strollers to look at thingsthat interest them or pointing things out to their parents.

Sometimes a child with an ASD will develop unevenly -- early in some areas,yet late in others -- which can add to parents' confusion. Children maywalk early and talk later or talk early but have trouble with basic motor skillssuch as running and jumping. Or children may develop appropriate imitationskills as an infant, but then, as they reach toddler age, they may take their imitationskills to the extreme -- copying and repeating the exact actions of otherpeople without really understanding what they're doing (a condition known asechopraxia).

Some parents have an easier time detecting very early signs of an ASD becausethey have other typical children at home with whom they can comparetheir child.

"How do we know what's normal?" Franklin asked me when Jake stoppedspeaking.

He had a point. Jake was our first child. How did we know what was consideredtypical development? We had read the parenting books and had asense of typical developmental milestones, but the books said there were alwaysexceptions.

"You're overreacting," our pediatrician tried to reassure me when I expressedconcerns about Jake's loss of speech and his sudden lethargy.

While Jake's loss of speech was the biggest red flag for us, it wasn't until afterJake was diagnosed with an ASD that we were able to look back at whatwere identified as other early infancy red flags. Jake had trouble nursing (anearly sign of oral motor issues), had an unusual combat crawl where hedragged himself across the floor (an early sign of gross motor issues, which involvethe larger muscle groups), and didn't walk until he was sixteen monthsold (quite late according to developmental charts). Other parents report notnoticing infancy or toddler warning signs until years later when they watchedearly home videos of their children. It was only then they observed that theirchildren didn't imitate or engage in pretend play or know how to grip a crayonwhen they were supposed to.

Researchers are now convinced that the earlier children are diagnosed, thegreater the chances that they will receive the maximum benefit from treatmentintervention. A report from the National Research Council (NRC) of the NationalAcademies of Science urges the National Institutes of Health (NIH) andthe U.S. Department of Education to promote early routine screening of childrenfor ASDs, similar to the routine screening that is done for hearing and visionproblems.

Which signs should you look for? Here is a list of questions that can helpyou detect the signs of ASDs. It's crucial to keep in mind that a child who exhibitsone or two of the listed behaviors is not necessarily on the autismspectrum. What makes these behaviors significant is that they occur frequently,intensely, and in clusters. This list should be used to alert you tosome of the early signs of an ASD; it should not be used for official diagnosticpurposes. I compiled this list based on information from the Centers forDisease Control and Prevention (CDC), the Autism Society of America(ASA), and from speaking with doctors and experts in the field of autismspectrum disorders:

Does Your Two- to Five-Year-Old Child...

not respond when you call his or her name or seem generally unresponsive?

not use his or her index finger to point to objects to indicate what he or she wants or to show you something?

have intermittent or no eye contact?

still not speak?

not speak anymore?

demonstrate odd or idiosyncratic speech or language -- such as endlessly repeating nursery rhymes, echoing or repeating words or phrases, or making unusual sounds?

demonstrate odd or idiosyncratic behavior -- such as hand flapping, finger flicking, or constant spinning?

demonstrate a regression in overall behavior -- including communication, play, and social skills?

experience emotional volatility and tantrums that are out of control?

have poor motor coordination when it comes to physical activities such as running or climbing?

fixate on objects such as ceiling fans or bright lights or parts of objects such as the wheels of a toy car?

seem highly distracted or "spaced out"?

show an inappropriate attachment to objects (such as always carrying around a statue or piece of string) or frequently put objects into his or her mouth?

engage in obsessive, repetitive behaviors such as opening and closing doors, turning light switches on and off, or lining up cars?

display ritualistic behaviors such as lining up books on the floor in a specific order at specific times?

engage in little or no spontaneous pretend play?

constantly play by him or herself, showing no interest in peers?

never bring or show you toys?

show no separation anxiety when you leave?

resist change and insist on sticking to specific routines or rituals?

engage in self-injurious behavior such as head banging or hand biting?

show no apparent fear of danger or pain?

not like to be hugged, cuddled, or touched?

have unanimated facial expressions and/or a monotone voice?

demonstrate extreme over- or underactivity?

display a lack of sensitivity or oversensitivity to sound, touch, or visual stimuli (such as loud noises, rough fabrics, or bright lights)?

have unusual sleep patterns (such as trouble falling asleep or not sleeping through the night)?

eat only limited, specific foods?

This is excerpted with permission from "The Autism Sourcebook : Everything You Need to Know About Diagnosis, Treatment, Coping, and Healing,"by Karen Siff Exkorn. Published by Regan Books. Copyright © 2005.

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