MUSC specialists diagnose, treat autismby Heather WoolwinePublic Relations When most people think of an autism spectrum disorder (ASD), an image of Dustin Hoffman in the movie, “Rain Man,” shuffling through a busy intersection or rapidly crunching numbers comes to mind. But this image is like a small facet of a brilliant diamond; ASD manifests its colors on a broad spectrum that includes those with splinter skills like Hoffman’s character, and even those so high functioning that it’s difficult to tell they have an ASD at all. “It probably seems like more people are diagnosed with an ASD today as opposed to 10 years ago, and there is a reason for that,” said Jane Charles, M.D., MUSC Developmental Pediatrics. “It’s really a combination of better diagnostic tests, raised awareness, and a broadening of the criteria required for a diagnosis. Essentially the DSM-IV (listing of mental illness and criteria) made the autism pot bigger, so now there are more people that fit in the pot. “One of the interesting things about the analysis of this condition is that there are no good studies out there on how many children have autism,” Charles said. “One of the things that MUSC is doing about this is a grant that we are working on with the Centers for Disease Control (CDC) to do a prevalence study in South Carolina.” One of 18 states included in the study, MUSC’s task was to identify children in specific age groups diagnosed with an ASD. With medical, school, and state records from 22 counties and 46 school districts, there was plenty of data to sift through. Having collected two points of data already, Charles plans to compile data once more so that when all the data is analyzed a true pattern may emerge. She plans to publish results with the CDC in the next couple of years. Diagnosing Autism
“The idea is to start treating children with autism prior to age 3 so that by the time they reach school-age, hopefully they will be prepared to transition into a normal routine and school environment,” Charles said. Some parents might wonder how in the world a diagnosis before age 3 is even possible. Charles and her colleagues use a list of major developmental milestones to help discover when a child may or may not be autistic. How a child demonstrates his use of gestures, emotion and joint attention, communication, language comprehension, use of objects, and how he plays all help determine whether or not deficits are present. For example, a 6-month-old baby should share big, happy smiles with his caregiver. By 12 months of age, a baby should be able to use gestures such as waving and pointing to communicate. She should respond to her name and should play social games like peek-a-boo. By 18 months, a baby should start to engage in simple pretend play like feeding a baby doll. By two years, toddlers should be able to put together two word phrases such as “want cookie,” and should show an interest in playing with other children. “By 18 months, if your child isn’t using and understanding 10 single words, then there is definitely reason for concern,” said Laura Carpenter, Ph.D., MUSC Developmental Pediatrics. “Most people worry about odd behaviors indicating autism in young children, but it’s those typical developmental milestones that a baby is not achieving that we are more concerned about. If a baby stops babbling or talking at any age, she needs to be taken to the doctor for an evaluation.” Carpenter went on to say that she’d rather see concerned parents taking children to pediatricians and making sure that they are OK rather than “waiting to see if they catch up with other children. The average age of diagnosis now is 5 to 6 years old and that really misses the boat on early intervention, which takes place during the toddler and pre-school years. We can reliably diagnose autism as early as 18 months.” A diagnosis of an ASD requires that patients have all three of the following criteria prior to age 3: language delays or abnormal use of language, abnormal social interaction, and unusual or repetitive behaviors. “When we say that a patient must have all of these things, it’s not like the deficits in these areas are a little here or there,” Charles said. “Children with autistic symptoms seem much more abnormal than say a child with ADHD. Thirty percent of children with autism have a major regression around 15 to 18 months of age, like when a child completely stops talking.” Because of a national push towards early diagnosis before age 3, determining who has an ASD changed from previous years. While many of the symptoms can be similar to disorders like ADHD, anxiety disorders, or communication disorders, autistic symptoms are much more distinguished and outside the realm of normal behavior. “There’s a big difference from having a child who demonstrates quirky or weird behavior and a child whose behavior is resulting in an inability to gain certain skills or develop social relationships,” Carpenter said. There is no typical autistic child and no one intervention that is a one-size-fits-all order. The ratio of boys to girls diagnosed with an ASD is 3-to-1, but autism knows no racial or socioeconomic status lines, it is indeed an equal opportunity condition. Out of children referred to MUSC clinics for suspected autism, 66 percent are diagnosed with an ASD and of those children there are three major categories:
The second tool, the Autistic Diagnostic Interview- Revised (ADI-R), details 100 questions for parents to answer about their child and if a child scores above a particular threshold, then he or she is diagnosed with the disorder. Both require intense training and MUSC is responsible for training many post doctoral fellows and interns to use these instruments. MUSC clinics dedicated to the diagnosis of ASD conduct four brand new evaluations a week where a patient sees a physician and a psychologist. The child receives a complete medical and psychological work-up, and if diagnosed, begins follow-up visits with the pediatrician in addition to treatment. “These youth need to be followed by a specialist with expertise in the area of ASD and may include experts in the fields of pediatrics, psychology, psychiatry and neurology,” said Eve Spratt, M.D., associate professor of psychiatry and pediatrics. “There are current efforts at MUSC to improve multidisciplinary training, clinical care and research in this area.” Triggers and Treatments
“The scientific literature out there simply doesn’t support the notion that an ASD might be brought on by certain vaccinations that young children receive,” Charles said. “The truth is we really don’t know why certain children develop the condition or why such a broad spectrum exists.” What many clinicians will agree on, however, is how to properly treat someone with an ASD. “The only treatment with an empirical basis is early intervention using applied behavior analysis,” Carpenter said. “There is a lot of research to support its use. It’s an intense therapy that requires about 20 to 40 hours a week of treatment tailored to each individual case. It does work best for those who do not have cognitive delays and have some communicative abilities. But even though this treatment can be highly effective, it can be expensive and labor intensive for several years if begun at the best time.” Unlike many conditions these days, an ASD can’t be treated with a magic pill. And though treatment has come a long way and some patients, if treated early enough, go on to lead pretty normal lives, an ASD takes a toll on the patient’s family as well. “There are plenty of support groups out there for families, but it’s the little things in dealing with an ASD that can be so hard,” Carpenter said. “Children with autism look like other children so when they melt down, others automatically assume the child is just being a brat or a parent isn’t doing a good job. This can get to parents after awhile. Something as simple as finding a baby sitter can be a major undertaking. Managing all of the appointments and financial responsibility is draining. As clinicians, it’s hard for us to even tell families what to expect.” The good news is that the majority of children with autism who receive treatment demonstrate major progress and diminished symptoms. “Children with autism respond best to consistency and predictability, they need some more preparation than others, and respond very well to visual cues and pictures,” Carpenter said. “Events that fall outside of the child’s normal routine can be very stressful to these children. When interacting with these children in a medical setting, it’s important to remember to be sensitive and to ask parents about their likes and dislikes.” Myths about Autism
Understanding the Needs of Students with Asperger Syndrome and High Functioning Autism in South Carolina. Guest speakers includeLaura Arntesin Carpenter, Ph.D. (MUSC); Livy Fogle, Ph.D. (MUSC); and Lottie Koster (Carolina Autism Applied Behavioral Services). Got to http://www.lorman.com (education)
or call 888-678-5565 to register.
Friday, Feb. 4, 2005
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