Do Kids Beat Autism?
Kids benefit from early intervention and the right therapy.
Can symptoms of autism go away? A recent pilot study out of UC Davis had success with six out of seven infants that were given very early treatment. The infants, age 6 months to 18 months, were identified by researchers as having ASD symptoms such as low eye contact, little interest in social engagement, repetitive movement patterns and a lack of intentional communication. The children’s parents were taught to use a therapy called Infant Start, which was administered during natural interactions throughout the day.
The study, “Autism treatment in the first year of life: A pilot study of Infant Start, a parent-implemented intervention for symptomatic infants,” co-authored by UC Davis professors of Psychiatry and Behavioral Sciences Sally J. Rogers and Sally Ozonoff, is published online in the Journal of Autism and Developmental Disorders.
In a press release, Dr. Rogers said, “Most of the children in the study, six out of seven, caught up in all of their learning skills and their language by the time they were 2 to 3. Most children with ASD delays,” she said, “are barely even getting diagnosed by then.”
“Children who get services early get better outcomes,” said Dr. Tara Buck, assistant professor, Department of Psychiatry, Division of Child and Adolescent Psychiatry at OU’s School of Community Medicine. “But there is a spectrum of severity. That can be frustrating about ASD. There’s no great way to know exactly what the child will need.”
Dr. Buck was also quick to point out that the number of children involved in the UC Davis study was very small, and she noted the intense nature of the therapy the infants were receiving from their parents. It warrants more study.
“We’re getting better at recognizing ASD,” she said, “but most children don’t get diagnosed until age 4 or 5. The American Academy of Pediatricians (AAP) recommends screening at 18 months, 24 months and 30 months.” The screening tool most typically used for autism in toddlers is the M-CHAT. “Pediatricians are doing better at identifying children, so [that may be one reason] the rate seems to be going up. The current rate is 1 child in 68, according to the CDC.”
The child’s pediatrician is often the first person to identify ASD symptoms in children. “We look for developmental delays during well-child check-ups,” said Dr. Lamiaa Ali, M.D., assistant professor with OU Physicians and the Department of Pediatrics, OU School of Community Medicine. “We teach pediatric residents to look for red flags right after birth at 2, 4, 6, 9 and 12 months. For example, not babbling at 9 months, not gesturing or pointing or not responding to names.”
Dr. Ali explained that she sees improvements in children’s ASD symptoms when they have early intervention therapies, but there can be roadblocks to early intervention. Once a child gets a referral from a pediatrician for more testing, the child’s parents often lack access to resources, or finding resources may be confusing or slow. Sometimes the parents may be in denial that their child has a problem. All of these issues can create a lag time of sometimes several months between the parents bringing the concern to the child’s doctor, and the child receiving services. Because early intervention is so important to a positive outcome, Dr. Ali suggests the child begin receiving services immediately, even without a definitive diagnosis.
“If I refer them for further testing,” Dr. Ali said, “I don’t let it go. I will have a close follow-up to make sure the services are being done.”
Dr. Buck pointed out that there are great providers and services in Tulsa, “but there are just not enough.” Parents with children younger than 36 months who have developmental delays can find help through SoonerStart. She also recommended Sooner Success as a valuable resource for parents of children ages 0 to 21 who have physical, developmental, emotional, behavioral special needs.
Private providers and therapists can also be an important part of a child’s treatment, but can be expensive. Jim Ayers, Special Care Advocate at Therapy and Beyond, said that the Affordable Care Act has helped families get coverage for the services they provide.
“Families are now able to go out and buy a policy on the open market,” Ayers said. “They can secure an individual policy that covers Applied Behavioral Analysis (ABA).”
Ayers also encourages parents to advocate for their child. Therapy and Beyond can help them navigate a confusing system of care and insurance. “Several companies offer policies that cover ABA,” he said. “We can provide families with a ‘letter of compassion’ to compose a letter to an HR department to make a case for covering their child.”
Lyndsay Wheeler, a board certified behavioral analyst, SLP-A, and regional director for Therapy and Beyond, is a specialist in ABA, a research-based therapy for children with ASD.
“ABA therapists understand that autism is different for every child. They understand how to break down a goal. They understand why a child isn’t learning,” Wheeler said. “Our goal is for [our clients] to be happy and have the ability to know how to learn. To be confident and competent. We’ve had a ton of success getting kids where they need to be.”
Wheeler said that Therapy and Beyond incorporates a speech therapist with the ABA therapist, and they work with clients one-on-one, either in the office or at the client’s home. A therapist will also go to a child’s school and train the personnel on what the child needs. Because ABA is intense and time-consuming, parents must be involved in their child’s treatment.
“In Tulsa I’ve gotten a lot of kids who have started really late,” Wheeler said. “If you can get a kid in an intensive ABA program 35 hours a week by the age of 4, then 20 to 30 percent will be indistinguishable from their peers.”
However, treatment at any age can help children. Wheeler said Therapy and Beyond’s biggest goal is to maximize every client’s potential. One 17-year-old-boy was non-communicative, even though he had been getting speech therapy in school. He was also a behavior problem. After six months at My Therapy and Beyond, Wheeler said that he can ask for things successfully.
“His parents say they’ve never seen him this happy,” Wheeler said. “He takes out the garbage and sweeps the floor. He told his therapists he loved them. His parents had never been able to take him anywhere, and they just went on their first family vacation.”
Ayers and Wheeler said that parents should look for a therapist who can play with their child, who will understand the child and work one-on-one with the child.
“Go with your gut instinct,” Wheeler said. “Ask the practice or the practitioner for data. What skills are being worked on and has the child improved over time?”
“ABA is a relatively new thing for insurance to cover,” Ayers said. “Make sure that the therapist is a board certified Behavioral Analyst. They may use ABA principles, but not be certified.”
Parents should also look at what they wish their child to accomplish, and ask if the therapist has experience in helping clients with that goal, whether it’s potty training, living skills or other practical skills.
Wheeler emphasized that parents should use their child’s physician and medical providers as part of the team. A child may have ASD, but also may be suffering from other physical or mental health issues at the same time, called “co-morbidity.” A physician and/or a psychiatrist can treat physical and mental health problems while speech, occupational and other therapists work with the child in different ways.
As a child psychiatrist, Dr. Buck sees children who have mental health disorders in addition to ASD. “If you see a child with ADHD or an anxiety disorder in addition to ASD,” she said, “you can treat the mental health disorder, and I see a lot of improvement once the mental health issue is treated.”
Dr. Ali said that the ability to care for such patients has improved now that OU currently has four child psychiatrists on staff rather than one.
Both Drs. Ali and Buck point to the future of medicine as being more patient-centered, integrated and multi-disciplinary. “Right now, there’s such a need for services that we’re looking at different ways to do things such as integrated care, [rather than] all fee for service,” Dr. Buck said. “It’s an exciting model.”
Dr. Buck urges parents to find support through autism organizations so that they can educate themselves, advocate for their children and find empathetic peers.