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Students at Harwood Center participate in structured playtime where they learn how to play appropriately by sharing and taking turns.

In 1943, Leo Kanner, MD, classified a group of children who were withdrawn from human contact as having early infantile autism. Today the definition of autism is expanded to include a range of pervasive developmental disabilities known as autism spectrum disorders (ASD). The spectrum ranges from classic autism (non-verbal and withdrawn) to higher functioning forms characterized by distinctive social skills and play such as Asperger syndrome.



No cure exists for autism and much is still unknown about the cause or risk factors. Combine that with increased media coverage, celebrity attention and numerous unproven theories, and it becomes difficult for families to separate facts from speculation. What is certain – the earlier developmental delays like ASD are diagnosed and interventional therapies are given, the likelihood of positive outcomes increase.



All the players involved in detecting and treating autism – parents, pediatricians, psychologists, therapists, neurologists and educators – have their own unique perspective about where to look for answers. What is common among them is the need for cohesive treatment services within the community.



Local Clinicians Tackle Autism with Limited Resources

Autism is on the radar of any parent who’s picked up a magazine in the last three years, and more people are bringing concerns to their pediatrician. Since autism is developed before age 2, agencies are pushing for early intervention. Unfortunately many kids are missed in that critical window. Free early intervention services are offered to children from birth to age 3. Interventions include behavioral therapy, including applied behavioral analysis (ABA), the only research-based intervention for improving autism; as well as physical, occupational, and speech-language therapies.



At early intervention agencies like Harwood Center, serving Memphis for more than 50 years, therapists say they need more pediatricians to do early screening and help identify more children by or before age 2.



“If pediatricians have any doubts or concerns, they can refer here, it’s a free service,” maintained Caitlin Allen, developmental psychologist at Harwood. “The worst thing is they won’t qualify.”



Red flags for autism include – no smiles by 6 months; facial expressions by 9 months; pointing, reaching or waving by 12 months; no words by 16 months – and in general, any loss of speech or social skills at any age. The typical plan of action, after a delay is suspected by parents and pediatricians, is to refer those children to tertiary centers for a diagnostic evaluation by a psychologist or developmental pediatrician. Determining what type of delay the child has, and to what degree, allows clinicians to build a treatment service plan for families.



After age 3, services are no longer free and fall under the management of the school systems where, unfortunately, children are seriously underserved.



Recognizing the red flags, especially in the youngest patients is not always easy, said Fred Palmer, MD developmental pediatrician and director of the UT Boling Center for Developmental Disabilities, a center of excellence dedicated to assessing children, training providers and advocating for services. Pediatricians typically have limited training in developmental disabilities, Palmer said, and time constraints in the office limit their ability to address the issue. But, he maintained, “we’re definitely moving away from the wait-and-see method.”



The American Academy of Pediatrics (AAP) is addressing gaps in the healthcare system that impede opportunities for early intervention by calling on clinicians to become more vigilant. In November, AAP released their clinical report with suggestions for systematically identifying and evaluating ASDs, recommending autism screenings at 18 and 24 months. In addition, pediatricians need to be familiar with developmental, educational and community resources, along with subspecialty clinics. To aid pediatricians in this goal, the AAP developed an autism toolkit for clinicians which contains screening and surveillance tools, practical forms, tables, and parent handouts to assist caregivers in the identification, evaluation and management of ASDs in children.



UT Boling Center typically evaluates children older than 3 for a range of developmental disabilities. In addition, pediatric residents spend one month at Boling to become familiarized with handling developmental disabilities. Referral evaluations are comprehensive and can take an hour and a half per child. The waiting list at Boling is six months.



“I think if a parent has a concern and the primary care physician thinks there really is a reason for concern, then the child should be evaluated,” said Fred Palmer, MD. “The question is, how far can that primary care physician go in making that decision and is the pediatrician really focused in on it and have some background in it?”



With the lack of resources in the city, including too few ABA certified behavioral therapists, and a critical lack of support in the school system, Palmer rates Memphis’ ability to handle autism at about a four out of 10.



“There’s not just one thing we can do to fix it,” he stressed. “It requires professionals to deliver quality services. It requires parents to participate and advocate. It requires schools to provide (interventions) in a meaningful and timely way. It’s a huge, interacting, complex system.”



Couple limited resources with the pervading unknowns about autism and general pediatricians may feel reluctant to jump on a diagnosis of autism.



“(Autism) is noticed more now and parents may worry, if my kid flaps his hands in front of his face, is he autistic?” noted Janet Geiger, MD, pediatrician at River City Pediatrics. “I am very uncomfortable with making that label because it’s not black and white at all.”



In her practice, Geiger does regular check ups for proper milestones, but recently became more comfortable with screening for Autism after the state chapter of the AAP, TNAAP offered workshops to instruct on integrating the autism toolkit into pediatric practices.



“The toolkit really formulized the process,” Geiger said. Based on the detailed questionnaires and history from families, Geiger makes her own assessment. “If I suspect fine motor (issues), I’d immediately refer for speech or occupational therapy. But if (a delay) is in more than one area, I try to think if it’s something more global about the child and that’s when we use other resources.”



“Fortunately we haven’t had a lot of positives,” she continued. “But even when you do get a diagnosis, it becomes a “what now” (scenario); what do we have to offer these children?”



State Program Working to Increase Early Intervention

Nationally and statewide, the goal is the same – diagnose autistic children sooner and place them into treatment programs earlier. Clinicians, the state’s early intervention agency and the Bureau of TennCare want to reduce the backup caused at tertiary centers specializing in developmental disabilities.



“Diagnosis is a challenge right now because there aren’t enough people to do it,” said pediatrician John Hill, MD, at Le Bonheur Children’s Medical Center. Hill is the current president of TNAAP, the state chapter of the AAP.



According to research presented at the International Family Centered Conference in 2003, 20 percent of pediatric office visits are about developmental, emotional or behavioral concerns. In addition, 80 percent of parental concerns about their child having a delay are accurate.



Since 2004, the Tennessee Chapter of the American Academy of Pediatrics (TNAAP) has implemented the START (Screening Tools and Referral Training) program across the state which allows pediatricians, family practitioners, nurse practitioners and other staff special training evaluating developmental disabilities within their practice. It gives clinicians a better understanding of resources in the city and how to better document services, coding and reimbursement. This is hoped to ultimately speed up the process of referring children to specialists.



Specifically addressing autism in Tennessee, the Bureau of TennCare gave TNAAP a grant to collaborate with Vanderbilt University’s TRIAD (Treatment and Research Institute for Autism Spectrum Disorders) to initiate a pilot program in Middle Tennessee. This extension of START, called START-ED (evaluation and diagnosis) is a training program designed for community pediatricians to assess and diagnose children suspected of having autism so they can receive specialized intervention as soon as possible. Four pediatricians were chosen for the TRIAD study which began in July 2007 and was completed in June.



Developmental pediatrician, Quentin Humberd, MD, said the objective was to allow clinicians to categorize the children as either ASD present, ASD not present or needs more detailed evaluation in the space of a one-hour consultation.



“We wanted to address who is best to do diagnosing to get early intervention,” said Humberd, the immediate past president of TNAAP. “(The state) decided pediatricians have the training and ability.”



Humberd said it’s basically a quality improvement practice change. The program uses second level screening and diagnostic tools which combine a focused history (positive vs. negative), family history, and free play probe, all of which equal about an hour office time. Pediatricians agreed to set aside one slot weekly to provide the assessments, a cost effective solution.

“The tools are designed to be done by ancillary staff and coded, then interpreted by the physician,” explained Humberd.

During the TRIAD study which began in July 2007 and was completed in June, assessments were videotaped by TRIAD clinicians to assure consistent administration.



After reviewing the data, Vanderbilt researchers compared pediatrician assessments to those of specialists and found that they were, 75 to 80 percent of the time, in 100 percent agreement. In the other one quarter of cases there was minor agreement between ASD or another form of pervasive developmental disorder.



“We found the data says it’s working,” maintained Humberd. “Three quarters of the time doctors can tell if a child is on the spectrum and can bypass having to go to a referral center.”



The original four pediatricians are continuing assessments in their office once a week. Humberd said those once-weekly consultations offer other general pediatricians a place to refer children, ultimately offsetting the long wait times for tertiary center evaluations. Efforts are underway to replicate the program in west Tennessee and relieve some of the burden on local assessment centers.



Reimbursement a Hurdle to Providing Services

Poor reimbursement rates are a considerable issue for families and physicians alike. The Autism Society of America (ASA) estimates the lifetime cost of caring for a child with autism ranges from $3.5 million to $5 million, and costs the U.S. $90 billion annually. Special therapies have long been snubbed by insurance providers, but families may have more help with the recent passage of the Autism Equity Act. This legislation provides that children in Tennessee diagnosed with autism must be given equal access to the same therapies provided to other children with neurological disorders, such as cerebral palsy and head injuries. This includes physical, occupational, speech/language and behavioral therapies.



In a proactive move, the Bureau of TennCare freed up more reimbursement monies for pediatricians to conduct developmental assessments of all kinds.



“If you have a well-child exam and you do a developmental assessment,” explained Hill, “there is a way to bill for just that developmental assessment and they can increase your pay for that visit a little bit to cover costs and encourage people to do it.”



A Resource Toolkit for Clinicians visit:

TEIS: 800-852-7157, www.TN.gov/education/teis

Harwood Center: 901-448-6580, www.harwoodcenter.org

UT Boling Center: www.utmem.edu/bcdd



For additional information on START or START-ED program, contact:

Ruth E. Allen

EPSDT Director, TNAAP

Phone: 865-927-3030







August 2008

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