Talking About Autism

An expert Q&A about autism.

Q. Why is it so important to get early intervention?

A. The child who is missing the core developmental milestones for social relating, communicating and thinking is missing the building blocks for broader learning. The long-term effects can be devastating. And they go far beyond delayed speech or play skills. The mind and brain grow very rapidly during the first three years of life. This is a very critical time for developing these skills. The older a child gets, the harder it is to learn. But once you understand what core milestones a child may be missing, you know where to intervene. We have a much better understanding of how the brain works. Early on, the brain can adapt and find new pathways when the usual ones are blocked. Later on, it becomes more difficult to create these new pathways.

Studies have shown that children with autism who receive intense, early help enter their school years with higher IQs and less need for special education. Some can make remarkable progress and learn to socialize, communicate and think creatively, with none of the differences that would otherwise set them apart from their peers.

Q. So many parents rely on their pediatrician. What should a pediatrician’s role be?

A. While the role of the pediatrician is not to “diagnose” and “treat” a child with Autism Spectrum Disorder, his role is to monitor a child’s healthy development and to address concerns through the practice of routine developmental surveillance. Observation by itself is not enough, since developmental delays can be subtle and easy for the untrained eye to miss without the use of a validated screening tool. By making developmental surveillance and routine developmental screenings regular parts of office visits, the index of suspicion becomes heightened for physicians, helping them to sharpen their observations and to elicit better information about concerns from parents.

The most important way to monitor the healthy growth and development of a child is through an active partnership between parents and physicians. The pediatrician’s role is to observe, listen, screen and refer when a concern is raised. Later, after the child has been diagnosed, the pediatrician should make sure that the family is receiving the proper services, that there is follow up, that referrals for insurance are facilitated, and then ask how the family is coping and offer resources when appropriate.

Q. Tell me about your experience after your daughter was diagnosed?

A. Immediately following the diagnosis, I went into mission mode to understand the disorder and how to treat it. But I soon discovered hundreds of possible treatments and no one to help me navigate the process. I searched for the best developmental and biomedical specialists and asked them to join my daughter’s team. We developed a very comprehensive home-based program using the framework of the DIR/Floortime model, which consisted of six-eight Floortime sessions each day lasting 20-30 minutes apiece. Our program also included speech/language therapy, play therapy and occupational therapy three-four times per week, as well as many playdates with typical peer models. I enrolled Sarah in a full-time specialized school program with lots of structure and opportunities to explore and interact. Her biomedical treatment included dietary and nutritional interventions, as well as medication. Like many other children with autism, my daughter was later diagnosed with other co-morbid or overlapping disorders, including colitis, childhood bipolar, ADHD and PANDAS. My daughter has made profound progress over the years, thanks to early identification and intensive intervention.

Q. What is the most important thing you have learned from the road you have traveled?

A. Autism has changed my life in the most profound ways. Initially, it turned everything upside down and inside out. It tested me in ways that I never imagined. But my perspective and priorities changed quickly. As I embraced the diagnosis and accepted that it would change the course of my life forever, I knew this was the path in life I was meant to walk. Autism has not defined my daughter, nor has it changed her personality.

Q. What is First Signs?

A. First Signs, Inc. is a national non-profit organization dedicated to educating parents and pediatric professionals throughout the world to recognize and identify the “first signs” of developmental delays and disorders in early childhood, including autism. We focus on the critical and often overlooked aspects of development: social, emotional, communication and behavior. Our mission is to promote the best developmental outcome for every child through public awareness and education. Our goals are to improve early identification through a simple screening method, to facilitate timely referral of children to early intervention programs and to lower the age at which most children are diagnosed. It is possible to mitigate a full-blown disorder if you intervene early enough and, in some cases, children can become indistinguishable from typically-developing peers.

Q. Have your programs resulted in any change?

A. In a few short years, First Signs has helped to change policy, improve awareness and change pediatric practice in how we screen, refer and detect young children who are at risk for autism and other developmental disorders. To date, we have launched public awareness and training programs in New Jersey, Minnesota, Pennsylvania, Wisconsin, Alabama and Delaware. We have provided outreach to thousands of families and information to hundreds of thousands of individuals and organizations worldwide. First Signs has received requests to launch our program in more than 47 states and five countries.

Q. Why is there such a need for change?

A. According to the Centers for Disease Control and Prevention, one in six children has a developmental, behavioral or learning disability. Autism is the fastest growing developmental disorder in the U.S., affecting as many as one in 166 children. The average age of diagnosis is between 3 and 6, despite the fact that most parents feel there is something wrong by 18 months of age and are usually seeking medical assistance by 2 years. But what’s so startling is that fewer than 30 percent of primary care providers conduct regular standardized developmental screening tests and only about 18 percent of children who need early intervention services receive it.

Healthcare providers are the only professionals who have routine contact with all children prior to school entrance. They’re required by Medicaid and urged by the American Academy of Pediatrics to detect developmental and behavioral problems and refer children promptly to early intervention services. But, they lack the tools, the training and the time. Developmental screening and surveillance should be a routine part of every well visit.