Joseph D. Buxbaum, PhD

Director, The Seaver Autism Center for Research and Treatment

Icahn School of Medicine at Mount Sinai

Autism spectrum disorder affects about one in 68 children in the United States. It can be hard for parents to learn that their child is the one with autism. But confronting the issue is necessary to begin therapy, and early intervention is important for maximum improvement.

What Is Autism Spectrum Disorder?

Autism spectrum disorder (ASD) is a behaviorally defined disorder characterized by difficulty with social communication and the back-and-forth flow of social interaction, as well as the presence of repetitive behaviors or restricted interests. Sometimes a person with ASD can interact with others, but may have other problems, like abnormal patterns of speech or trouble taking turns. Repetitive behaviors often include flapping of the arms, rocking, or pacing. Alternatively, the individual may have a deep and unusual interest in a single subject, like knowing every stop on the New York City subway system and how to get from point A to point B without looking at a map.

What Causes Autism?

We don’t know exactly what causes autism, but we do know that genetics accounts for about 60 percent of the total risk; the remaining factors are unknown. These genetic factors may either be inherited or occur spontaneously in the sperm and eggs that develop into human embryos. Environmental factors are also being studied, but one thing is clear: There is very strong evidence that vaccinations do not cause autism.

Signs of Autism

ASD affects people in a range of ways, but some common signs in children include:

· Infants (by 6 to 8 months of age): poor eye contact and minimal response to their name;

· Toddlers: lack of “joint attention,” e.g., not looking at something you have called their attention to by using your voice, pointing, or looking at intently;

· Older children: lack of social engagement, like not hugging or physically pulling away; flapping or rocking; being averse to or seeking certain kinds of sensory stimuli, like touching things repeatedly in specific ways; a delay in language or odd language.

What to Do If You Suspect Your Child May Have Autism

Early intervention leads to the best outcomes for kids with ASD. If you are concerned that your child may have autism, is important to take him or her to an autism center as soon as possible for a detailed evaluation. If autism is diagnosed, experts at the center will recommend an early intervention program and individualized educational plan for schooling, and map out clinical services tailored to the child’s needs.

Managing Autism

The good news is that therapies like applied behavior analysis (ABA) have been shown to improve outcomes in many cases. These behavioral therapies are very intensive and require a good therapist. Other recommended services might include occupational or physical therapy and speech-language therapy. Some adolescents may benefit from a program that uses behavioral approaches to help them understand how to get and keep a job. Medical issues like epilepsy (which sometimes accompanies autism) also need to be managed.

Friends and Family Can Help

Sometimes there are barriers to early diagnosis. Receiving bad news about a child is difficult, and some parents may react to signs of autism with what is called the “ostrich effect”: they put their heads in the sand, preferring to ignore the signs. Some pediatricians are reluctant to raise a concern because there is no nearby autism center to refer parents to, or the physician fears the parents will be angry. Sometimes family members spot the symptoms, but parents don’t believe them. In fact, as my colleagues and I found in a study that we conducted at The Seaver Autism Center for Research and Treatment at Mount Sinai, roughly half of family members and close friends who suspect a child has autism don’t mention their suspicion to the parents because they aren’t sure or don’t want to cause distress.

This study, which we called “Grandma Knows Best,” showed that frequent interaction with a grandparent, primarily the grandmother—who isn’t as reluctant to share her concerns—dramatically accelerated the age of diagnoses, by four to five months. This is very significant; an “earlier” autism diagnosis normally refers to a few weeks rather than several months. These results suggest that close family and friends should feel comfortable saying something—and parents should be receptive to hearing it—because doing so may lead to earlier detection and treatment.

Help Yourself, Help Your Child

If you have a child with autism, it is vital that you become a strong self-advocate, because it can take time, effort, and perseverance to find the right experts for diagnosis and treatment and to line up the services your child needs.

· Talk with parents who have been through this before and can help you navigate the service delivery and educational systems.

· If your school district is paying for treatment, as is the case in many states, make sure there is no delay in getting started.

· Be aware that to qualify for services, you will need a report written by a competent center that identifies the services required for the best outcomes.

· Be prepared to seek professional or legal advice on how to ensure that your child receives the services he or she needs.

Help is out there. But to start, parents of children with ASD must recognize that there is a problem. The key is to make the diagnosis as early as possible and follow up with the right interventions to give your child the best chance of improving social, communication, motor, and daily living skills.