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Autism Q&A

Email|Print|Single Page| Text size + By Patty Morin Fitzgerald
Globe Staff / April 23, 2008

Could your child have autism?

If you are concerned, author Jayne Lytel urges you to take steps. Time is of the essence.

Though denial is a natural instinct and the threat of being called a pushy parent hovers, you should find a physician knowledgeable about the disorder — which will strike 1 out of 150 born in the United States this year, according to the Centers for Disease Control — and take your child for an assessment as soon as possible, says Lytel, whose younger son, Leo, has been diagnosed.

Research, and her experience with Leo (featured in a video on her website, jaynelytel.com), show that early diagnosis and treatment can mean a world of difference in the outcome, according to Lytel, who has written ‘‘Act Early Against Autism,’’ published by the Penguin Group (USA) Inc.

Q. How early can a diagnosis of autism responsibly be made?

A. The core defining features of autism emerge around 18 months, but some top private diagnostic centers, such as the Yale Child Study Center, will give a ‘‘provisional’’ diagnosis to children as young as one year.

Q. What are the most common early signs?

A. A huge red flag for autism is a lack of ‘‘joint attention,’’ which develops around nine months of age and means a baby’s ability to share enjoyment about a person or object with a third person using a spontaneous shift in eye gaze back and forth from the subject to the third person. The development of this skill is critical to more complex social behavior.

In a baby, vocal patterns that go on and on and squeals where the quality of the tone seems odd also could signal trouble.

Another early sign: If it’s hard to get a smile out of your baby by six months, you should worry. If your child doesn’t notice you by his or her first birthday, that’s another big sign.

What’s important to remember is that autism is a constellation of symptoms, so any one symptom is not enough to place a child on the autism spectrum.

Q. What is the difference between a diagnosis of autism and autism spectrum?

A. Autism is a specific diagnosis with a complex set of criteria defined in the Diagnostic and Statistical Manual of Mental Health Disorders (fourth edition, text revision), known as the DSM-IV-TR, while autism spectrum is the category that lists the five spectrum disorders.

In the manual, this is called the Pervasive Developmental Disorders category. The five disorders listed under this category include autism, Asperger’s disorder, Rett’s disorder, childhood disintegrative disorder, and this one’s a mouthful — pervasive developmental disorder-not otherwise specified, or PDD-NOS, which is atypical autism. That means the full-blown criteria for autism is unmet, but there are still impairments in the three areas indicated by classic autism, though intellectual impairment is rarer. I have written a plain English version of the DSM-IV criteria for autism at actearly.org

Q. You warn about obtaining early diagnosis and treatment but isn’t that expensive?

A. It can be, but let’s separate early diagnosis from treatment. First, consider screening your child to see if further testing is required. This can be done right away and doesn’t take a lot of time. One of the most popular screening tools for autism is the M-CHAT (Modified Checklist for Autism in Toddlers) parent questionnaire. The M-CHAT is a series of 23 yes-and-no questions that focus primarily on a child’s language and social skills. The M-CHAT screens for the possibility of an autism spectrum disorder in children as young as 16 months.

You can take the M-CHAT online for a small fee (about $10) at the Forepath site at forepath.org. You can also find the M-CHAT by just Googling it. But keep in mind that a layperson isn’t qualified to score the test. The Forepath site automates the scoring step. Getting a diagnosis borrows elements for how the health insurance industry works. If you prefer your own experts, you’ll pay. If you’re willing to take what the ‘‘system’’ gives you, you won’t.

These, of course, are generalities under the federal law that guarantees you the right to have your child evaluated and treated under public expense. The next critical piece is the age of your child. That’s because public services are divided into two buckets — one bucket serves infants and toddlers and another set of services takes over once your child gets older. Under the law that writes these rules, which is the Individuals with Disabilities Education Act, the law defines the age range for infants and toddlers as 3 and younger. These children fall under publicly funded ‘‘early intervention’’ services.

For older children, from ages 3 to 21, your neighborhood school is responsible for providing services. In either case, the rules for how critical services are to be delivered and the people responsible for carrying them out are different.

The official, national organization that maintains contact information for early intervention services across the nation is the National Dissemination Center for Children with Disabilities. Email nichcy@aed.org to find your local early intervention office or call its toll-free number 800-695-0285. Tell the operator that you want to talk to an information specialist. You also can visit the site’s State Resources page at nichcy.org/states.htm to find contact information.

For children 3 and older, contact your neighborhood elementary school and speak to the principal. Explain that you suspect a developmental delay and that you want your child evaluated.

The principal is likely to put you in touch with the school psychologist or person in charge of overseeing special education services for the school. Sometimes these specialists are shared among schools and won’t be in when you call. Leave a message.

If you can’t get a hold of the principal, call your school district office and ask for the chairperson of the Committee on Preschool Special Education. Many principals are either ignorant or not motivated to help and might point you in another direction altogether.

If you want to bypass publicly funded services, you have that right. Many hospitals and universities run top-notch diagnostic centers. A private evaluation can cost hundreds, if not thousands, of dollars, waiting lists can be long, and health insurers are stingy to reimburse. The LADDERS Clinic in Wellesley is highly regarded for diagnosing children on the autism spectrum. Call 781-449-6074 or visit ladders.org. I list others in my book and on the actearly.org website in the form of a Google map.

Turning to treatment is when the big bucks start to run up. A panel of federal experts that examined various intervention models recommend at least 25 hours of therapy a week. That can cost up to $1,000 a week if you decide to pay for it yourself. While publicly funded services through early intervention and school districts are supposed to pay for your child’s treatment and education, not all of them will pay for everything you think your child needs, and you might have to fight for payment.

Q. How do you know who is the best person to make the diagnosis?

A. Ask your pediatrician to recommend a team of professionals who has extensive experience evaluating autism spectrum disorders. Autism is too complex — and serious — a disorder for one person to diagnose accurately, especially in children who are mildly affected.

Q. You gave up a career to give your child undivided attention. Is that was parents are facing to have the best outcome?

A. I’m afraid it is. I don’t see how it’s possible to manage your child’s therapy program and work a full-time job, especially in the beginning. Educational opportunities for children 3 and younger are generally half-day programs, if they exist, and then the afternoon is spent schlepping to therapy appointments. Wedged in between could be a home-based program, which requires commitment, both in terms of time and recruiting and training therapists, who are often students.

Sometimes, parents use babysitters to do some of the work, but I always needed to talk to my son’s therapist to find out how he was doing, which motivated me to continue throughout the day. Unfortunately, despite best efforts, not all children will have a ‘‘best outcome,’’ but they will be able to participate more fully in life when intervention is started early and is consistent and intensive.

Q. Where can parents turn for the best treatment?

A. In selecting a ‘‘best’’ treatment for your child, consult with your intervention team or other professional whom you trust. But beware of their biases. Ask them about their philosophies toward treatments, where they earned their degree, and if they’re certified in a particular method.

Different disciplines of practice have their own dispositions. For example, doctors schooled in biomedical treatments are likely to recommend treatment options that would address digestive disorders and metabolic problems compared with professionals certified in behavior analysis or Floortime, a form of play therapy.

Q. In your book you urge parents to trust their own instincts, that they know their child best, but is that always the case, and won’t doctors fight that attitude?

A. Some pediatricians will fight that attitude, but I believe more and more pediatricians will embrace screening toddlers for an autism spectrum disorder before their second birthday, which was the recommendation of the American Academy of Pediatrics this fall. We now need to begin the process of educating pediatricians about autism’s earliest warning signs and convince them to screen for the disorder just as they routinely measure a toddler’s height and weight at well-baby checkups.

Q. What is your child’s long-term prognosis? Is there enough known about outcomes with early diagnosis and treatment?

A. As I look ahead, I imagine my son as proud, happy, healthy and successful. I also believe he will find true love. Short term, his next set of challenges, I believe, will involve the pressures of being a teenager, and I will help him deal with them as I did when he couldn’t tell me what color shirt he wanted to wear to school.

More research is needed into outcomes related to early diagnosis and treatment. There are no national statistics on the number of children who have ‘‘recovered,’’ or even criteria to base it on. Dr. Deborah Fein, co-author of the M-CHAT, is conducting research in this area, and I have granted permission for my son to participate in her study this summer.

Q. Has there been any progress in determining the causes of autism? Is there enough research going on?

A. I believe there has been great progress in determining the causes of autism. We know that about 10 percent of all children with autism have an identified genetic disorder, such as fragile X or Rett’s disorder. And I’m relieved that more research is being directed at potential environmental triggers since this area ignites so much controversy and passion in parents who are convinced that there is a link between autism and the environment or toxins.

While research marches forward to determine the causes of autism, I would like to see more research aimed at the efficacy, or effectiveness, of treatments. There are thousands of families in crisis right now who get overwhelmed by the voluminous amount of information they need to process about the disorder in general and treatments in particular. I found one website that listed some 500 treatments for autism. No wonder parents get confused about how best to help their child.

Patty Morin Fitzgerald can be reached at pafitzgerald@globe.com.

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