From the Publisher
"This book is excellent. It has been a big help in many ways. Dr. Siegel clearly explains what the ideal process should be when you learn you have a child on the spectrum. The discussion of issues facing the entire family was particularly valuable. I highly recommend this book to other parents."Will M., father of a 4-year-old with autism
"All parents want to do the best for their children, and this indispensable book shows how, step by step. Autism and its treatment are very complex, but Dr. Siegel's experience and accessible style make the issues crystal clear. She distills the vast amount of information that is out there for parents and separates the good advice from the bad. This book is a beacon of sanity and reassurance for any family navigating these stormy waters."Ami Klin, PhD, Director, Autism Program, Yale Child Study Center, Yale University School of Medicine
"Dr. Siegel's book is a 'must-have' resource for families dealing with autism spectrum disorders. This scientifically based roadmap will help you not only to navigate the confusing sea of autism-related literature, but also to nourish the particular learning style of your child."Brian Ruder, parent and board president, Jumpstart Learning to Learn
"This book draws on Dr. Siegel's wonderful conceptual understanding of the learning styles and social and emotional difficulties of children with autism, and translates it into very practical suggestions for parents. She doesn't promise cures, but she understands the value of hope and optimism. The book provides a balanced picture of what treatments are available, what is needed, what is realistic, and how to help your child effectively."Gary B. Mesibov, PhD, Departments of Psychiatry and Psychology and Director, Division TEACHH, University of North Carolina at Chapel Hill
"If you know or suspect that your child has autism, this book is a great resource. Dr. Siegel takes you on the journey from first diagnosis to finding treatments that meet your child's unique needs, and explains the critical role that parents can play. An excellent, timely, and compelling guide. Although it is written for parents, the book also will be extremely useful for practitioners."Debra Moss, MA, Autism Specialist, Los Angeles Unified School District
"The sheer number of 'expert opinions' on autism treatmentnot all of them trustworthycan be overwhelming to parents. This book provides a road map of masterful clarity. Dr. Siegel draws upon her research and clinical experience with thousands of families, intermingling this experience with wonderful common sense, humor, and empathy, all in a very readable style. Every parent of a child with autism will benefit from reading this book."Peter S. Jensen, MD, Director, The REACH Institute (The Resource for Advancing Children's Health), New York, New York
Journal of Child and Family Studies
"This book gives a good overview to many of the mainstream interventions. It also provides a thorough treatise on IEP's and parental roles and rights....I would recommend this book to parents of children newly diagnosed with autism and to educators and service providers. This book can provide caregivers the 'big picture' of what is involved from the process of screening and diagnosis of autism, the identification of providers, the selection of interventions, and the knowledge and skills needed in dealing with the special education system. Educators and service providers will also find this book helpful in terms of information they can share with caregivers of children with autism."
Read an Excerpt
Getting the Best for Your Child with Autism
An Expert's Guide to Treatment
By Bryna Siegel
The Guilford Press Copyright © 2008 The Guilford Press
All rights reserved.
Off to a Good Start
TIMELY SCREENING WILL SET YOU ON THE PATH TO HELP
You can get to the best treatment plan for your child with autism by a number of paths, but they all start with screening followed up by a good diagnostic visit. Autism cuts across many domains of a child's development, and available treatments tackle the disorder from all different angles. As a parent, you'll soon learn that the challenge in getting the right help for your child is that not all children are affected in each domain in exactly the same way. So if you want to make sure that a treatment plan will be designed to fit your unique child, you need to get a very complete diagnostic picture.
But when should you get started? It doesn't take a lot of reading about autism to know that kids with these disorders need a lot of help and that the earlier you get started, the better off your child is likely to be. So you may be very eager to have your child assessed—yet wonder how much a doctor can tell you about a one-year-old. Or maybe you've already taken your concerns to your pediatrician and been told to "wait and see," and you don't know if you should. Perhaps you've had your child screened and been told your child may very well have autism and now you have no idea where to go for help—or what kind of help to seek. Or the doctor said your child probably doesn't have autism but you're still quite worried that he does. Now what?
This chapter is about what to do with your earliest concerns that your child might have autism. It will tell you how to get a reliable screening—and what the key early signs of autism are. If your earliest concerns arose a long time ago, and you've already started following up on them, you may very well be more interested in the next leg of this journey—how to arrive at the best treatment plan and then put it in place. You may not need to read about screening, but I urge you to read this chapter to make sure you know what questions you will need to have answered by a diagnostic visit. A thorough, targeted diagnostic assessment is essential to arriving at a good treatment plan. A good diagnosis should not just tell you whether or not your child has autism but also help you understand your particular child's current development levels, motivators, learning strengths, and learning weaknesses. If you realize that whatever evaluations you've already had have left gaps in the information needed to address your child's weaknesses and capitalize on his strengths, you may want to seek further assessments that help you understand these things. So whether you've been down this road before or are just setting out, you can use this chapter to make sure the necessary groundwork is solid.
Screening and Referral: The First Steps
Once most parents feel certain that they have reason to be concerned about their child, they'll first consult a primary care professional—like their pediatrician or family doctor. These doctors can screen a child for autism as the first step in determining whether a more detailed assessment will be necessary and will send you on to someone qualified to reach a diagnosis.
What Does "Screening" Mean?
It's important to realize that a "positive" screen by a pediatrician is not the same thing as a diagnosis. A positive screen is really just a "ticket" to see a specialist. The purpose of screening for autism is to determine whether the child has enough risk factors for the disorder to justify a more intensive, extensive, expensive assessment, which should involve observation, testing, and history taking specifically for autism by someone trained to do that type of assessment. (Screening usually involves just a pencil-and-paper questionnaire and is really a "rough estimate" of what might be wrong.) Autism screening is designed to overinclude children who might have some form of autism but will need a full assessment to find out if they do have it. Obviously, it's important to be sure your child has been screened well; otherwise he might be excluded from a more thorough assessment that he needs. If you have any doubts about the screening process your child has already undergone—or wonder whether your primary care doctor can perform this screening—use the information in this chapter to start over or start right.
Autism screening is an area where there is a growing amount of research. Much of my own research work, namely, development of an early parent-reported screening test for autism—the PDDST-II (Pervasive Developmental Disorders Screening Test)—as well as other early screening tests for autism spectrum disorders like the CHAT (Checklist for Autism in Toddlers) and M-CHAT (Modified CHAT) can specifically identify unique traits that mark the earliest form of autism. The emphasis in a screener is on unique traits of autism and the presence of multiple concerns—as some other screeners include lots of questions that are true of children with autism but are not particularly unique to autism—and therefore a screening test can lead you into thinking your child has autism when he doesn't. Each of the screeners I mentioned is basically a short questionnaire for parents to report on key concerns about their child who might have autism. Depending on the screener used, the age of the child, the experience of the parent, and the review of the screener by a professional, the screener, used properly, can be exceedingly helpful in getting a child into the diagnostic "pipeline."
Is the Pediatrician in a Good Position to Screen Your Child?
A pediatrician or family doctor who isn't familiar with autism or doesn't use a particular screener should send you straight to an audiologist, a speech therapist, or an early interventionist—who will surely be able to do this. If the primary care doctor doesn't refer you—or you have misgivings about the results of the screening—call a speech and language pathologist, the special education intake services in your school district, or the child psychiatry program of a local university or medical center and self-refer your child. Whoever you talk to will likely take your concerns seriously, ask questions, and then explain whether and where there is a place to go next. At this point, don't worry about referral channels or insurance coverage; just try to get your child seen. You can always "reverse engineer" the paperwork after an appointment is scheduled.
One thing to know is that a large percentage of families I see in our clinic have been told, at least once, not to worry. When they do find out their child has autism, they understandably feel frustrated that the pediatrician brushed off their initial concerns. If you're in this position, you may feel angry, but know that it's not the end of the world. Not knowing about autism likely does not reflect on your pediatrician's competence in the areas of physical growth and development—so this doctor may still very well be the best choice for well-baby care.
While the American Academy of Pediatrics is placing more emphasis on all primary care doctors being able to screen for autism and related conditions, pediatric training for most doctors gives them few opportunities to learn much about developmental disorders like autism. Although you may be surprised to learn this, it has only been in the past ten years or so that screening for specific developmental or psychiatric disorders has even appeared on the pediatric training "radar." On top of this, many primary care doctors have practices that simply don't allow enough time during a well-baby check to do much in the way of addressing a parent's developmental concerns. This is why screeners for autism like the PDDST-II are designed to be filled out in a pediatric waiting room and then take only an additional five minutes of the doctor's time if it looks like the test is positive. They are specifically designed for the busy doctor without much special knowledge of autism, who may need a positive "test" to justify the cost of further special evaluation to his HMO or PPO organization.
This is also why you should educate yourself about the screening process. If you know what a screening should do and which concerns may indicate that your child has autism, you'll know whether you've gotten on the right track.
"Should I Try to Screen My Child for Autism Myself?"
Of course a little knowledge can be a dangerous thing. Many proactive parents, when they start to investigate their concerns that their child may have autism, naturally go to the Internet to search for "autism" and "screening," possibly turning up the PDDST-II or CHAT. But there are a couple of concerns here. All of us who have worked on the development of early screeners for autism can agree that getting a parent report of first concerns is where we must start. Parents see their child in more situations than any doctor or other professional, know what the child's consistent personality traits are, and can tell whether a particular worrisome form of behavior may sometimes occur—even if it doesn't occur often. However, the parents' reports must be put into context by a professional who can weight the behaviors reported in the context of other children with autism. The parent who has read about autism has not had the opportunity to meet many autistic children at different ages and so is not in a particularly good position to assess what is "typical" of autism. That means that screening for autism, just like everything else that will come after, must be a collaboration between parent and professional. For your part, you can gather the observations that have been worrying you to take to the primary care doctor. If you've already had your child screened, make sure you and the doctor covered this ground.
How Early Is Early Enough—or Too Early?
One of the first things parents worry about when they see signs that something may be wrong with their child is when to seek professional advice. If your child has already been screened, you may wonder if you had this done at the right time. Was it too early for any definitive answer to be given? Can you be sure the outcome of the screening was accurate if done too early? On the other hand, you may worry that you or your pediatrician waited too long and this denied your child the earliest possible treatment.
A well-trained clinician can pick up autism by twenty-four months of age, and some very specialized clinicians can pick it up by eighteen months of age. Before that age, a child may be missing language milestones (like communicative use of babbling)—which might be autism or might be something else, like a severe language impairment. In either case, bringing the baby to the attention of a professional should help the child get started on services he can use (like language therapy) irrespective of the diagnosis. Anybody who claims to be certain of a diagnosis of autism at fourteen months old or younger has more self-confidence than direct familiarity with the research literature. There may be interventions you want to start below one and a half years old—we'll certainly talk about that—but developmental rates and patterns are so uneven in the first couple of years that we are not always positive exactly what we are treating.
Keep in mind that recognizing autism early is not as easy as getting your child's primary care provider to administer an early screening test. A screening test is just that, screening, not diagnosis. As I said earlier, a screening test is an indication that a careful, detailed assessment must be done to determine whether the child has some form of autism and, if so, what kind of treatment plan will be the best fit. I'm repeating this because many parents I meet have gotten the false impression that their child was "diagnosed" with autism using a screening test like the PDDST-II or the CHAT, or even a screening test that isnot specifically designed for toddlers and very young children like the CARS (Childhood Autism Rating Scale), which school psychologists sometimes use, or the GARS (Gilliam Autism Rating Scale), which is newer than the CARS but has very low specificity (that is, ability to describe symptoms uniquely associated with autism).
A large percentage of children with severe early language disorders, mental retardation, or a language problem or developmental disability plus a problem like severe anxiety or attentional problems can screen "positive" for autism on a screening test. So—don't start thinking of your child as "autistic" until your child has undergone a full diagnostic evaluation and received a definitive diagnosis from a specialist diagnostician. Depending on which screening test is used, about 75% to 90% of children who are screened positive will turn out to have some sort of autism spectrum disorder. While those are pretty good statistics for screening any sort of disorder, it also means that 10% to 25% of children for whom the screener raised concerns about autism were not really autistic at all.
Early Signs Most Unique to Autism
So what can be determined at each early age and with what degree of certainty? Here's a brief summary of what can reliably be determined (and what can't, and why) before a child is two, to give you an idea of what any screening done before that age might be worth. If your child is under age two right now, I've also given a few tips on what you can be doing while you wait for a clearer picture to emerge.
I've had an opportunity to watch many home movies of children with autism that were made when they were six months old. Even knowing that the child in question will be clearly autistic just two years later, it can be a stretch to point to anything really wrong. Many babies this age (autistic or not) don't look like Mr. Personality when postured for a camcorder and don't seem that alert—they're so busy growing physically that they have little energy left for anything else. Even with a baby who looks outright floppy, unable to track moving objects, or hard to get a (positive or negative) reaction from, even when tickled or bounced, my first thought would not be autism but perhaps moderate to severe mental retardation. In any case, there is not much in the way of interventions that will be useful later that would be useful now. If you're worried about a six-month-old, spend a bit of extra time talking to this baby, having face-to-face contact, and physically engaging the baby (clapping hands and feet, playing peek-a-boo) to alert your baby to his social world.
In their first-birthday videos, babies who later develop autism often appear frightened or overwhelmed by all the fuss and don't seem to get that this is about them—but neither do shy, anxious, and slow-to-warm babies. It is, however, at this age that we begin to look for several things to appear together that may later become clarified in a diagnosis of autism—not paying attention socially, being in their own world when others try to reach them, and not looking at what you try to get them to look at. More on those signs later in this chapter. If you've seen these signs but your pediatrician says it's too soon to screen, look for your local Early Start agency and take the baby there. In some locales, Early Start services are offered by Easter Seals, UCP (United Cerebral Palsy), ARC (Association for Retarded Citizens), Scottish Rite, Elks, or Shriners' programs, or local departments of public health or developmental disabilities. Your pediatrician should be able to give you this contact information—even if this doctor does not share your concerns at this point. Early Start is a federally mandated avenue for providing help to children birth through age three who are at risk developmentally. Assessors at an Early Start agency will have seen many one-year-olds with a variety of difficulties and will be able to use screening tests at least to rule in or rule out a reason for concern. If there are any Early Start concerns, even at-risk infants and toddlers can be offered services, possibly including a specialized Mommy and Me social group to give you ideas about stimulating your baby, or home visiting where a home visitor can model play with the baby and show you what toys are good and perhaps not so good for development.
In babies we first see at age one we can pretty much rule out any autism about half the time but continue to monitor the other half for overall delays, language delays, or possible autism. At this very early age, any development concerns ultimately may be due to any number of other things.
Excerpted from Getting the Best for Your Child with Autism by Bryna Siegel. Copyright © 2008 The Guilford Press. Excerpted by permission of The Guilford Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.