SPARK for Autism

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What Should You Do if You Think Your Child Has Autism?

A photo of a girl and a therapist observing her play

Marina Sarris

Date Revised: February 24, 2023

You suspect your child may have autism. How can you find out for sure, and as quickly as possible?

Thousands of families in the United States face this question every year. Today, 1 in 44 children has autism, according to U.S. health officials. The path to an autism evaluation and diagnosis can be long and winding, especially if you don’t know the way. Experts offered advice for parents who are just starting on that journey.

What are the signs of autism?

A young child with autism may have some or all of the following traits:

  • Does not respond to their name
  • Speech delays or unusual ways of talking
  • Plays alone without trying to involve others
  • Does not respond, or responds too strongly, to sound, touch, texture, taste, lights, or other information from senses
  • Becomes very upset by small changes, such as taking a new route to day care
  • Has repetitive movements or behavior, such as rocking, flapping of hands, or spinning

Parents can visit the “Learn the Signs, Act Early” website to learn more about developmental screenings and how to talk to their pediatricians, says Amy S. Weitlauf, Ph.D., a clinical psychologist and associate professor at Vanderbilt University Medical Center in Tennessee. “Learn the Signs” is a program of the Centers for Disease Control and Prevention (CDC).

What should you do if you suspect autism?

“The first thing is to raise your concerns with your pediatrician,” says Garland Jones, Ph.D., a clinical neuropsychologist at Kennedy Krieger Institute’s Center for Autism and Related Disorders in Maryland. Many pediatricians screen their patients for autism when they are 18 months and 24 months old.

Based upon a screening, or a parent’s concerns, a pediatrician will often refer the child to a specialist for evaluation. A pediatrician who is comfortable doing so “can make an initial clinical diagnosis,” according to an association of pediatricians.1 Specialists who make autism diagnoses include child psychologists, psychiatrists, pediatricians who specialize in development and behavior, child neurologists, and providers at clinics for autism and developmental conditions.

Children are diagnosed with autism after their fourth birthday, on average, but many can be diagnosed by 2, according to a report from a federal autism committee.2

Unfortunately, it may be hard to get a speedy appointment with a private clinic or specialist. Many families may wait weeks, months, or even a year or more for an autism evaluation. The length of a wait may depend on where they live, insurance, or other factors. “It just breaks our hearts to know that kids are waiting a long time,” Jones says. “That’s just sad.”

What should you do while you’re waiting for an autism evaluation?

Jones and other specialists recommend that parents contact their local early intervention program as soon as possible. There, they can receive a free evaluation. “These offices are set up across the country, and they will do an assessment of the child’s functioning and determine if there is a developmental delay,” Jones explains.

Most importantly, they can provide therapies for the child if they find a delay. Research shows that early intervention can help children gain developmental skills, so they can reach their potential.

“What is most important is that the child is having a problem, and they need services to address the problem,” Jones explains. “That should be the primary focus. We can label that later.”

Whom should you call for early intervention services?

The answer depends on your child’s age. If your child is under age 3, use this early intervention program list to find the office for your state or U.S. territory. Depending on their needs, children may receive speech therapy, occupational therapy for hand and feeding skills, physical therapy for problems with walking or running, and play groups to help with social skills. Therapies are available at little or no cost, depending on where you live.

If your child is 3 to 5, the CDC offers this advice: “Call any local public elementary school (even if your child does not go to school there) and say: ‘I have concerns about my child’s development and I would like to have my child evaluated through the school system for preschool special education services.'”

For students in kindergarten to 12th grade, parents may contact their child’s public school to request an evaluation.

Unlike clinics and doctors, early intervention and school officials face certain timelines to conduct an evaluation, under U.S. special education law. They also must provide free special education and therapies if the child has a developmental delay or disability that affects learning.

What should you expect from an autism evaluation?

The appointment may look different depending on who is conducting the evaluation ― a medical doctor, psychologist, or an autism clinic. At Kennedy Krieger’s autism clinic, which has a team of different specialists, the appointment can take part or most of one day, Jones says. He discusses autism evaluations, expectations, benefits, and barriers in a recorded SPARK webinar.

A health care provider will usually use an autism diagnostic tool that involves observing and interacting with the child, Jones explains. A parent or caregiver may also be asked questions about the child’s behavior, skills, and developmental and health history.

A psychologist may use tests to measure a child’s cognitive or learning abilities, memory, and attention, Jones says.

Having an autism diagnosis can make it easier to get therapies that were designed for autism. For example, one family in the SPARK study reported that a health care provider recommended that their daughter receive behavioral therapy, a proven intervention for autism. But the girl could not begin the therapy because she did not have an autism diagnosis yet.

A diagnosis of autism ― made by health care or school professionals ― is also necessary to join the SPARK autism study.

School systems can diagnose autism as a condition that affects a child’s education. But they often use the “developmental delay” diagnosis until the child is in elementary school, unless a health care provider has already diagnosed autism, Jones says.

What problems may families face in getting an autism diagnosis?

Many families face difficulties along the path to diagnosis and intervention. They may not know much about autism, their doctor may not notice autism signs during a brief appointment, their community may not have enough autism specialists, or they may face problems with health insurance.

Some families report that their pediatricians were a barrier, either because they did not share the parents’ concerns or they preferred to “wait and see” if a child would catch up. “They didn’t help at all, I had to go around them,” one SPARK parent told researchers.3

Weitlauf urges parents not to give up: “If you’re worried about your child’s development, then trust your gut instincts and continue trying to seek that expert care, whether it’s through your pediatrician or your state early intervention system.” Parents can usually start working with early intervention and special education preschool programs without a referral.

Even if your pediatrician does not share your concerns, Weitlauf says, it is still OK to ask for referrals for other testing.

Can some families face more barriers to an autism diagnosis?

Some children are more likely to face barriers to a speedy diagnosis. Black and Hispanic children have historically been diagnosed less often, and at older ages, than white children, even though autism affects people of all races and ethnicities equally.4

Researchers recently surveyed 400 Black, African American, and multiracial families in the SPARK autism project about their experiences getting an autism diagnosis.

Almost a third reported that their race and ethnicity affected their experience. Some said that professionals did not listen to their concerns, or that autism evaluations included activities and toys that were not relevant to their culture. “Start believing us,” one parent in the study said. Another said, “We know our kids despite what society says about black parents not caring as much!”3

Researchers hope to use information from that study to develop tools and ways of better diagnosing Black and multiracial children, Weitlauf says. She co-led that research with Theodora Pinnock, M.D., of Meharry Medical College in Tennessee.

Doctors need “more accurate and culturally sensitive screening approaches” for autism, according to a 2020 report for the American Academy of Pediatrics.1

Jones says that the tools used to diagnose autism were developed based on studies of children who were predominantly white. These tools may not work as well with children of different races and ethnicities, he says. One solution is to begin including more underrepresented children in autism studies. SPARK, for one, seeks to include more autism researchers and participants of different races and ethnicities.

“To address that problem, and I love SPARK for doing this, it’s crucial that we make an effort to recruit more diverse participants into research studies, to get a more accurate view of autism in those communities,” Jones says. “That will inform our knowledge of autism in general.”

Interested in joining SPARK? Here’s what you should know.

Resources

References

  1. Hyman S.L. et al. Pediatrics 145, e20193447 (2020) PubMed
  2. U.S. Interagency Autism Coordinating Committee. NIH Publication No. 19-MH-8012 (2019) Report
  3. Weitlauf A.S. et al. J. Autism Dev. Disord. Epub ahead of print (2023) PubMed
  4. Centers for Disease Control and Prevention. Website. Accessed Feb. 2, 2023

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