The Autism Book: What Every Parent Needs to Know about Early Detection, Treatment, Recovery, and Prevention (Sears Parenting Library Series)

First Chapter

The Autism Book

Little, Brown and Company

PART I

Diagnosing Autism

1

Symptoms and Early Detection

Autism. It’s a word every new parent fears. You probably have a neighbor, friend, or relative who has a child with autism, and you see the challenges they face. You’ve always been slightly shielded from that world. You’ve been able to go home and be thankful you aren’t faced with the same thing in your own home. But now that might be about to change.

People will pick up this book and begin reading for many different reasons. Some of you might not have children and might simply want to learn more about autism. Some of you might have just had your first baby and want to know if there are ways to prevent autism. You might have autism in your extended family and want to understand more about the condition before having your own children. All of you will find this book an invaluable source of information.

But I know that most of you are reading this book because a doctor, a friend, a teacher, or a relative has expressed concerns about your child. Or perhaps you yourself have noticed some unusual behaviors and lack of language development in your toddler. Or maybe you are further along in the process and your child has already received a diagnosis of autism, early autism, or at risk for autism. Or perhaps you have an older child who has autism and you are looking to understand more about the latest treatment options.

I’m going to start at the beginning for those of you who have just started the journey. I’m going to introduce you to the most important aspects of autism: what it is, why we think it happens, and what your very first steps should be to start your child on the path toward treatment and recovery.

Did I say recovery? Yes. While we don’t yet know exactly what is causing autism, we do know a lot about how to treat it. And some children do recover completely. Many others improve to an amazing degree. That’s what this book is all about. But before we jump into all the details about treatment, I want to answer a few questions you may have and give you an introductory understanding of autism.

Autism is a unique medical condition in that it is a spectrum disorder, which means it ranges from very mild to extremely severe. It can also worsen or improve over time, and the myriad of symptoms vary from child to child. There is no blood test, brain scan, or single physical finding that a doctor can use to make or exclude the diagnosis; it is diagnosed by observation and evaluation of behavior and development. Sometimes the clues are very obvious, but often they are subtle and easily missed in the beginning stages. Confirming a suspicion at the youngest possible age is critical because the earlier treatment begins, the better the outcome. I will even be so bold as to say that autism is preventable in some kids, so acting on the earliest possible signs of developmental delay may prevent a child from declining into autism.

Ten years ago, before doctors realized autism was treatable, the medical community didn’t feel there was any rush to diagnose a child. If an eighteen-month-old toddler wasn’t talking or showing normal social development, we used to take the wait-and-see approach because we thought that it didn’t matter when treatment began; it didn’t matter if a child was diagnosed and began therapy at age two or four. Autism was autism, and that was that, and the outcome would be the same no matter what we did. Many children were left untreated for too long because of this misunderstanding. Now we know better.

Yet I still see some doctors and parents delaying the diagnosis and treatment until a child has full-blown autism. Doctors will sit on a diagnosis of at risk for autism or showing early signs of autism and maybe only recommend some limited early therapy and another visit in six months for a recheck. Well, those are six long months of lost therapy potential. In my view, any child with noticeable features of early autism should be taken seriously and treated as if he were diagnosed with autism. The reason I’m so adamant about this is that in my practice I’ve seen countless at-risk babies and toddlers receive extensive early therapy and never go on to develop enough criteria for a diagnosis of autism. Many of them recover to such a degree that no one would ever believe anything was ever suspected.

The bottom line is this: Early detection and action is paramount. I wish I were sitting with you right now so I could give your hand a squeeze or even give you a big hug. Parents of a child with autism need a lot of support: intellectually, emotionally, and financially. I can’t give you all of that, but I do promise that I will help you learn everything you need to know for your family and your child so that you can start him on the path to recovery. Let’s get started.

WHAT IS AUTISM?

Autism is a neurological and medical disorder in which the parts of the brain that control communication, behavior, social interaction, learning, sensation, and motor coordination aren’t functioning properly. Each person with autism is affected in different ways and to varying degrees. Some will show only a few autistic characteristics; others will display many or all. A variety of genetic, medical, environmental, nutritional, and infectious factors may contribute to this neurological dysfunction.

Different Types of Autism

It’s important to understand the different types of autism and how they present. Many parents have the misconception that a baby is born with autism and will show signs during the first few months of life. This is generally not the case. There are four different kinds of autism:

Early onset. Some babies seem to be born with autism and don’t develop the typical eye contact and social interaction that should begin during the first few months of life. They don’t start babbling by nine months and don’t go on to develop language during the second year of life. These babies are usually diagnosed early on, once it becomes obvious that they are in their own world, usually by twelve to eighteen months of age. In my experience, this is the least common type, accounting for less than 10 percent of the children I’ve seen.

Regressive. Many children who are diagnosed with autism have a normal developmental history during the first year of life. They are playful, happy, and interactive infants. Then, after age one, they begin to lose their milestones. They stop using the few words they knew. They lose eye contact and social interaction. Regressive autism is usually diagnosed by age two. In my experience, it is the most common type.

Halted progression. Sometimes a normally developing baby doesn’t regress, but he stops progressing after age one. Because everything seemed normal for a while, and these kids don’t actually lose developmental milestones, they are harder to spot. They aren’t usually diagnosed until age two or three, when it becomes more obvious that their language and social interaction aren’t age appropriate.

Asperger’s syndrome. Also known as high-functioning autism, this type is the most challenging to detect early on because kids with Asperger’s develop in a near normal manner, including their language, and often display advanced intellectual skills. But there’s just something a little quirky about their behavior. It usually isn’t until the child enters preschool that the teacher and/or parents notice enough social and behavioral differences in the child to seek further evaluation. Some children aren’t diagnosed until mid–elementary school age, when social dynamics become more complex and the child’s lack of understanding in this area becomes apparent.

PDD-NOS. Many toddlers with early signs of autism are given the diagnosis of PDD-NOS, which stands for Pervasive Developmental Disorder—Not Otherwise Specified. This means that there are enough autistic symptoms and developmental delays to warrant an evaluation and some early therapy, but things aren’t bad enough to actually diagnose autism yet. A toddler with PDD-NOS could go on to develop any of the four types of autism described above. In some cases it is a pre-autism diagnosis. It’s the “I’m concerned something is wrong but I’m not ready to call it autism yet” explanation given by a neurologist or developmental pediatrician. If left untreated, PDD-NOS can become autism within six to twelve months. So, in my mind, it should be viewed and treated the same way as autism. It’s on the same spectrum.

To be diagnosed with autism, a child has to meet (or not meet) certain criteria, which I present on page 10, and he usually won’t meet enough of these criteria until age two or three. However, the developmental problems will have started one to two years prior to the eventual diagnosis of autism. So, even though a child may not actually meet the criteria for full autism until age two or three, I believe it is more correct to say that the age at which the genetic, metabolic, environmental, or medical factors first initiated the developmental decline or delay actually mark the age when the autism first began.

THE CHANGING FACE OF AUTISM: IT ISN’T JUST RAIN MAN ANYMORE

We all remember the classic Tom Cruise/Dustin Hoffman movie that introduced us to the world of adult autism. Well, Rain Man was severely affected because the treatments that we have now weren’t available when he was a child. Today, young children with autism receive so much intervention that most improve to a degree far beyond what we saw in that movie. Some children even recover fully. Unfortunately, until a precise cure is found, severe cases of autism may continue to show significant social and behavioral impairment throughout adulthood.

CLASSIC SIGNS OF AUTISM

Unless there is early intervention, most children with autism eventually develop many of the obvious and classic signs. Here is a list of the signs in layperson’s terms so that you can get an overall picture of what autism looks like:

Speech delay.

• little or no language, inappropriate use of language, or repetitive speech

• echolalia (talks by echoing back what is said to him)

• video talk (speaks by using familiar phrases from movies or commercials)

• easily memorizes things like ABCs and counting to ten but can’t make a simple request for something he wants

Social delay.

• doesn’t understand typical social boundaries or how to behave and interact in normal social situations

• decreased imaginary and pretend play

• noticeably hyperactive or underactive and sedentary

• tantrums that are more extreme than usual

• plays alone in own world, tunes others out

• doesn’t notice when someone enters the room

• often won’t return a happy smile when a caregiver engages with a smile

• doesn’t play with toys in the manner the toy is intended, or prefers to play with objects that aren’t toys

• poor eye contact or may peer at objects sideways

• difficulty with transitions from one activity to another (will have tantrum)

• no fear or understanding of dangerous situations

Unusual obsessions or movements.

• self-stimulating behaviors, such as hand flapping, repetitive movements, or lining up of objects

• toe-walking much of the time

• obsessed with routines and “sameness”

• restricted to certain foods and is unusually reluctant to try unfamiliar ones

• obsession with spinning objects, such as wheels or fans

• overly aggressive or self-injurious

Abnormal responses to sensory input.

• unusually high or low pain tolerance

• bothered by large crowds, noises, and chaos

• may not crave and may even be averse to cuddling, hugging, and other close contact, or may be the opposite: have an abnormal desire for deep-pressure massages, squeezing, and hugging—called sensory seeking

• bothered by certain sensations, such as from clothing tags or shoes that don’t feel right, the feel of grass or sand on the feet, or smells

CRITERIA FOR THE DIAGNOSIS

Specific and detailed criteria, called the DSM-IV-R criteria, have been established to make a diagnosis of Autism Spectrum Disorder. While the above discussion is a description of the signs a parent or other layperson may notice, the DSM-IV-R criteria are what a doctor uses.

Autism

In order to be diagnosed with autism, a child needs to have problems in all three of the following areas. A child who shows difficulties in only one or two areas does not receive an actual diagnosis of autism. But he can still benefit from many of the same treatments for the challenges that he does have. Here is an abbreviated summary of the diagnostic criteria for autism:

1. He has social impairment in nonverbal language (eye contact, facial expressions, posture, and gestures), peer relationships, interaction with others, and reciprocating emotions.

2. There is a communication impairment in speech, or in the case of those who do speak, a failure to initiate or sustain conversations, the use of repetitive or out-of-context phrases, or a lack of interest in pretend and imaginative play.

3. He engages in repetitive, obsessive, compulsive, or stereotyped behaviors, such as fixations on patterns or routines, abnormal body movements, or intense preoccupation with a narrow range of interests.

Asperger’s Syndrome

Asperger’s has a slightly different set of DSM-IV-R criteria, since the symptoms and the timing of their onset can be very different. The first and third points above are the same, but a child with Asperger’s does not have a clinically significant delay in language development during the first few years of life. He will develop single words on time and progress into three-word phrases by age three. There is no delay in cognitive development, self-help skills, ability to adapt to changes (other than social), or childlike curiosity.

However, the following unusual features of communication are apparent:

• intense focus on topics of interest (often out of context; see page 18)

• deficits in social language (how to engage, maintain, or finish a conversation while reading the cues of the other person)

• unusual tone, rhythm, and pitch to their voice, often sounding too formal or precocious

• problems understanding humor, lies, or irony

• may be an early reader and develop an unusually advanced vocabulary but may lack comprehension

Some other features of Asperger’s may include:

• poor organization and coping skills

• clumsiness

• some sensory sensitivity

• related disorders—Attention Deficit Hyperactivity Disorder (ADHD), Obsessive-Compulsive Disorder (OCD), learning disabilities

IS AUTISM REALLY ON THE RISE, OR ARE WE JUST DIAGNOSING IT MORE OFTEN THESE DAYS?

Years ago the medical community was in denial: Autism couldn’t be increasing so dramatically; we must be simply diagnosing it earlier and more thoroughly. Very few professionals in the medical community believe that anymore. The Centers for Disease Control and Prevention has made it perfectly clear: Autism has risen dramatically in the past fifteen years. Studies have shown that a small percentage of the rise in autism may be due to better diagnosis, but most of the increase is in the number of cases.

EARLY AND SUBTLE SIGNS OF AUTISM

As you were reading through the classic descriptions of autism and the diagnostic criteria, you might have been nodding as you recognized many familiar signs in your child. Or you might have been saying to yourself, “My child doesn’t have most of those signs!” It’s possible that your child has only subtle and early signs that are difficult to notice. I want to walk you through the early signs of autism that I have seen over the years. If you are reading this to learn about prevention or early detection for your healthy baby, or if you have seen a few minor quirks and are trying to decide if they are anything to worry about, this section is for you.

Lack of eye contact. This may sound like an obvious sign, and sometimes it is. But it can be subtle and intermittent at first. A normally developing baby typically seeks eye contact with caregivers, especially when engaged by the caregiver. A baby might be looking at a toy or his hands, but when Mom or Dad walks up and starts talking to the baby, his eyes should move right to the face and engage. A baby’s attention might linger on the toy for several seconds before moving on to Mom. Or a baby can occasionally be so focused on something interesting that you can’t get his attention away. Those situations are fine as long as most of the time you can engage his eye contact. But if your baby doesn’t usually turn and engage your face and eyes when you approach and stares for prolonged periods at other objects, this might be a sign of early-onset autism. Toddlers with regressive autism show a gradual decline in the frequency and intensity of their eye contact with you. You shouldn’t have to engage a toddler to get eye contact. It should be his idea to engage you on and off throughout the day. Some parents miss this early sign because they feel they can successfully get their toddler to look them in the eye, but that’s not enough.

Side glancing. A baby might show some early side-glancing behavior, in which he studies objects up close by looking at them sideways, out of the corner of his eye. This might be because the brain can’t register visual pictures from the central part of the field of vision.

Focus on spinning objects. Fans and wheels can be fascinating to a child with delays. He may stare at the ceiling fan. He may spin wheels on toy cars and stare at them up close. He may push a toy truck back and forth but stare only at the rotating wheels.

Lack of babbling. Babies should develop a vocal laugh by three months, be cooing and gooing at five months, start babbling with consonants by seven months, and begin spouting baby jibberish by nine months. These are all the stages a baby goes through in preparation for those first words by twelve or fifteen months of age. I have seen some quiet babies miss these milestones but then go on to develop just fine, so having a nonbabbling baby isn’t necessarily cause for alarm. But if this and other subtle signs are noticeable, bring them to your doctor’s attention.

No words by eighteen months. Normal language development goes like this: two words around twelve months, six words by fifteen months, ten words by eighteen months, and numerous words with two-word phrases beginning by age two. And the child should be using these words without prompting—simply repeating words doesn’t count.

A story I hear from parents over and over again is this: “Our toddler had no words at eighteen months. At age two we got a language evaluation, and the speech therapist said our child might have autism. At that point, all the signs were obvious.” What I prefer to hear from parents instead is this: “By eighteen months our baby had not yet said a single word, so we started speech therapy right away.” Another recurring tale that parents share with me is that their former pediatrician told them not to worry at eighteen months: “Boys just talk late. We’ll see how he’s doing at two.” I used to say those same words to parents. Now, it is true that some boys and even some girls will be a little slow to say Mama, and some toddlers will be a few months behind on the above timetable, and many of these kids will have a language explosion between eighteen months and two years. But some kids won’t. I believe it’s better to err on the side of caution by starting speech therapy and infant stimulation classes early (and perhaps unnecessarily) than to wait until your child is two and then realize his words haven’t started flowing freely. If you wait, you’ve missed a developmental window of opportunity.

If this describes your baby, and you want to start therapy now, go to chapters 3 and 6 for advice.

Solo play. Some toddlers love to play alone, and that’s okay. It’s fun to watch a child’s imagination develop. But toddlers should also crave and seek out play with their parents and siblings as well. A child who likes to play alone most of the time may not be blossoming in his social development.

Parallel play. Some kids will appear to play happily with other kids when they are actually playing alone right next to them. A child may even be mimicking other kids’ play rather than engaging in play with them. For example, three kids are playing with cars, “vrooming” them around on the floor. Two kids make their cars crash together and race each other, but one is just vrooming around alone.

Lack of engagement with a new person. Whenever a new person walks into a room, a neurotypical (the term we use to describe children with normal development) infant or toddler typically looks at that person, checks her out, catches her vibe, determines that the person is okay (or not), and then either goes back to what he was doing, engages that person, or curls up on Mama’s lap for protection. An at-risk child will usually show one of two reactions: Either he will have an unusual degree of fear and anxiety or he won’t acknowledge the new arrival at all.

Obsession with certain toys. Trains, trains, and more trains. What is it with trains? At-risk toddlers tend to become obsessed with certain toys. It is often trains, but it can be any toy, usually one with wheels. I’m not saying that every child hooked on a certain toy is a concern, but this may be one piece of the puzzle.

Plays inappropriately with toys. Toddlers should learn that cars go vroom, dolls are fed and cared for, action figures move and act out imaginary scenes, and balls bounce and roll. A child with delays may not play in this manner. He may line up the cars and stare at them from different angles. She may drag her doll around by the foot as if it’s not a “person.” He may just hold and look at a ball but not bounce it or roll it.

Obsessive repetitive movements. Children who perform certain actions over and over again (turning lights on and off, opening and closing drawers or doors, rewinding movie scenes to watch again and again—the list goes on) are said to be perseverating or stimming. It can also involve body movements, such as arm flapping, shoulder shrugging, or hand gestures.

Unusual sleep patterns or night waking. We’ve all known that baby who goes through night waking phases every hour or two. Neurotypical babies, however, can usually be parented back to sleep. While many infants with autism sleep just fine, some babies or toddlers with autism (or at risk for autism) wake up at night and do not go back to sleep for hours. They’ll want to stay up and play by themselves, or they’ll fuss on and off but not accept consolation from the parent. An at-risk child may also have trouble settling down to sleep in the evening; he might stay active playing by himself and not crash to sleep until midnight or later.

Sensory problems. I devote a whole section to sensory problems in chapter 3, but they deserve a mention here because they can be a predictor of more significant developmental issues to come. Sensory Processing Disorder (SPD), otherwise known as Sensory Integration Disorder (SID), is a recently labeled condition in which a baby or child doesn’t react to sensations such as touch and sound in a usual manner. One of the earliest signs, for example, is a baby who doesn’t like to be snuggled and cradled and will fuss and squirm to get out of such positions and be more open, free, and held upright. Some older babies with SPD get extremely upset when their hands or face are dirty and sticky. Toddlers with SPD tendencies may refuse to walk barefoot in grass or sand or won’t like it when their socks or shoes aren’t put on just right. Clothing tags may annoy, itch, and irritate a baby. Some kids may be overwhelmed by sounds, such as at a party or in a play area where there are lots of loud kids. Some kids will show the opposite reaction to certain sensations. For example, some crave deep pressure. They love to be hugged and squeezed. They enjoy deep pressure on their tummy or head. They may enjoy pushing their head or abdomen into a couch pillow or up against Mom or Dad.

All of the above signs might seem like obvious problems when read in this context, but they can be subtle, and often parents don’t notice them until they look back after a diagnosis of autism is made. Many neurotypical kids show one or two of these signs early on but then mature past them without any therapeutic intervention. It isn’t easy to know which infants need help and which ones don’t. If any of these signs describe your child, inform your pediatrician at the next checkup (or make an earlier appointment if the next routine check is a few months away). Your doctor will need to consider your observations within the entire developmental context. By understanding and acting on these early indicators of an at-risk infant or toddler, your doctor can begin intervention at a younger age.

ONLINE VIDEO LIBRARY OF SYMPTOMS OF AUTISM

Autism Speaks (a nonprofit organization), First Signs (an early-intervention organization), and Florida State University’s First Words Project created an online database of more than 150 video clips of children with autism displaying the most common symptoms, along with corresponding neurotypical behaviors. If you are curious or wondering about any of your child’s behaviors, visit www.AutismSpeaks.org, www.FirstSigns.org, or www.FirstWords.FSU.edu to view these videos free of charge.

SUBTLE SIGNS IN AN OLDER CHILD

Sometimes a diagnosis of mild autism or Asperger’s syndrome is not made until a child is five years or older because there weren’t many obvious clues early on. These kids often develop language in a somewhat normal manner, so autism isn’t suspected, but as they get older, more social and developmental quirks begin to show. Realize that any child might have one of the following characteristics, so don’t be overly worried if one of them is familiar to you. But if your child displays many of the following, there may be cause for concern:

Out-of-context language. A child’s answers to questions or her own spontaneous statements are a little out of context. For example, when I’m evaluating a child in my office, I might ask, “What is the name of one of your friends at school?” The child might answer, “We played with a dog at school today.” Then the mom chimes in, “No, dear, what is your best friend’s name?” The child might then answer correctly. Or when I’m talking with a mom and child in my office, a child might be walking around the room saying random things like “I like Elmo” or “My daddy flies airplanes.”

Unusually advanced language skills. This is common in Asperger’s syndrome. A child will be able to say his ABCs and 123s, sing songs, or recite nursery rhymes long before his peers. Such a child may also talk incessantly about only one or two topics of interest. A clue that this is a concern is that the child won’t converse on more general topics that a child should be interested in. This can be confusing to parents and doctors, because it’s hard to imagine that a child who is so smart could have autism. I have seen parents in my office rave about how smart their three-year-old is (and they are right!), have him demonstrate his spelling and math abilities, and describe how he can name every make and model of every car they pass on the road. When I notice other signs of autism, it can be difficult to convince the parents that there may be an underlying social developmental disorder.

Answering a question with a question. It can be hard to realize that this is happening, but once it’s pointed out to a parent, it becomes obvious. In the office I might ask a child, “What did you do at school today?” She might answer, “I did at school today…. Played with trains!” Or I might ask, “What is your favorite color?” The child might answer, “What is your favorite color?…Green.”

Being constantly busy without “checking in.” I don’t normally like to label a child hyperactive. My own first child was “one of those” boys who was pretty hyped up most of the time. He matured and slowed down when he turned five years old. But I do see some kids in my office who bounce around the room getting into things, banging on walls, opening cabinets, and exploring everything they see. It’s not done in a crazy sort of way, just in a very busy manner. Now, there isn’t anything wrong with this in and of itself. But in some of these kids, I’ll notice a subtle lack of interest in or involvement with what is going on between the parent and me. Most kids cooped up in an exam room will get antsy, but they should also be clueing in to what’s going on around them socially and involving themselves in it. They should be checking in, so to speak. Some kids will just do their own thing without engaging the people around them unless someone engages them first.

Missing social cues. A child on the autism spectrum does not pick up on social cues such as sarcasm, humor, teasing, or lying. He may understand and respond to what is said around him, but he won’t clue in to any underlying nuances that the speaker is communicating through body language or tone of voice.

Lack of awareness of personal space. Because an older child with autism or Asperger’s doesn’t understand all social nuances, he may tend to invade another’s personal space (or he may be the complete opposite: unwilling to go near a stranger). In my office I might have a four-year-old snuggle right up to me. Now, this is great if he is just comfortable and happy to see me. But if this is a recurring theme for your child, and there are other quirky characteristics, it could be a warning sign. You may also see your child hug other kids or stand too close to them.

Obsessive-compulsive tendencies. These can occur during the young toddler years or they might not become apparent until later. Here are some of the typical OCD behaviors I hear about from parents:

• repetitive opening and closing of doors or demanding that all doors remain either open or closed

• keeping food items separate on a plate and getting upset if foods get mixed

• obsessing over how items are arranged on a desk or table

• wearing only certain clothes

• obsessively touching or lining up certain objects throughout a room

The best thing you can do if you suspect your infant or child has a delay in development is to see your pediatrician right away. She can observe your child and advise you on whether or not to seek further evaluation.

CAN THE BRAIN BE HEALED?

As I introduce you to how autism is diagnosed and discuss what we know about causes, I want to reassure you that there is hope in the chapters that follow. We know so much about how to heal the body and the mind, and the biomedical treatment program that I will guide you through is based on that solid scientific foundation.

We know that good nutrition is one of the keys to improving many conditions. We know that numerous vitamins and minerals are essential for normal body functions. We know that making sure the intestinal system (often referred to as our second brain) is healthy is a prerequisite to healing the brain. We know that ensuring a strong immune system is critical. We know that supporting the brain with essential nutrients improves neurological function. We know that minimizing chemicals and toxins is important. We know that maintaining high antioxidant activity helps the entire body work better. We know that reducing inflammation within the body prevents numerous health problems.

These basic medical principles can be applied to every disease state. What I am going to show you in this book, besides mainstream therapy, is how these simple, straightforward principles apply to autism. And in the Resources, I back it up with science. I believe the benefits that these treatments have on the gut, the immune system, and the brain can potentially heal a child with autism.

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Excerpted from The Autism Book by Sears, Robert Copyright © 2010 by Sears, Robert. Excerpted by permission.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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