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Autism Spectrum Disorders: One Family's Story

Mary Elizabeth's Story

Photo: Mary Elizabeth and her family

Mary Elizabeth and her family

"Our personal journey into this world of autism began just over eight years ago with the birth of our son, Perry. Since the beginning, he struggled immensely. The first thing we noticed was that he seemed very restless. He was always unsettled. He had a lack of recognition in his eye. He didn't eat. He didn't sleep. As each day passed, we recognized more 'red flag' characteristics of autism with repetitive behaviors, speech/sound delays and more.

I put Perry's name on the waiting list of every developmental pediatrician in and around Atlanta. I was told there would be a minimum 6 month wait time. Meanwhile, at 12 months of age, he was found to be eligible for the Babies Can't Wait program (Georgia's early intervention system) due to his developmental delays and he began a steady course of daily therapies. When Perry was 15 months old, we finally got an appointment with a Developmental Pediatrician. The doctor confirmed what I already knew: Perry has autism.

I cried all the way home. I cried for 2 days, hoping and praying that I would be able to provide this child everything he needed. My research recommended 40 hours of ABA (applied behavior analysis) therapy, which insurance would not cover. I also found thousands of pages of different treatment approaches, all of which claimed to be effective in treating autism. I could not afford to make the wrong choice. My son's future depended on it.

In addition, I was 7 months pregnant with our daughter. Margeaux was born blue and immediately faced feeding and sleeping problems of her own. Margeaux's health struggles continued, one after the other. She was also restless, but in a different way than Perry had been. When Margeaux was 12 months old, we found ourselves undergoing our second Babies Can't Wait (Georgia's early intervention system) evaluation. Margeaux's therapy began and Perry's therapy continued. Now there were two therapy schedules to juggle. Her 'official' Asperger's diagnosis came at age 5. It was a long road.

While typical children are scheduling play dates and extracurricular activities, our children's lives are about therapies, day after day, year after year, usually 7 days a week. People on the outside cannot grasp the necessary skills that our children require help with.

My incredibly special children have been a true gift. Of course, like any mother, I would take away their struggles if I could. I strive every day to be the kind of parent they deserve. I hope I am as much a gift to them as they are to me. They are a bright spark in so many lives.

My ultimate hope is that one day soon my children will live in a world where they will be accepted and appreciated, despite their differences. As long as I am here, I try to surround them with people who love and accept them as they navigate this world, because autism never takes a day off."

Screening and Diagnosis

Get information on screening and diagnosis especially for health care providers, including:

  • Developmental screening tools
  • Diagnostic tools
  • Screening in the practice setting
  • Recommendations

Screening and Diagnosis for Health Care Providers >>

Diagnosing autism spectrum disorders (ASDs) can be difficult, since there is no medical test, like a blood test, to diagnose the disorders. Doctors look at the child's behavior and development to make a diagnosis.

ASDs can sometimes be spotted at 18 months of age or younger. By age 2, a diagnosis by an experienced professional can be considered very reliable.1 However, many children do not receive a final diagnosis until they are much older. This delay means that children with ASDs might not get the help they need during a critical period of development.

Diagnosing ASDs takes two steps:

Developmental Screening

Developmental screening is a short test to tell if children are learning basic skills when they should, or if they might have delays. During developmental screening the doctor might ask the parent some questions or talk and play with the child during an exam to see how she learns, speaks, behaves, and moves. A delay in any of these areas could be a sign of a problem.

Photo: Father and child with their healthcare professionalAll children should be screened for developmental delays and disabilities during regular well-child doctor visits at:

  • 9 months
  • 18 months
  • 24 or 30 months
  • Additional screening might be needed if a child is at high risk for developmental problems due to preterm birth, low birth weight or other reasons.

In addition, all children should be screened specifically for ASDs during regular well-child doctor visits at:

  • 18 months
  • 24 months
  • Additional screening might be needed if a child is at high risk for an ASD (e.g., having a sister, brother or other family member with an ASD) or if behaviors sometimes associated with ASDs are present.

If your child's doctor does not routinely check your child with this type of developmental screening test, ask that it be done.

If the doctor sees any signs of a problem, a comprehensive diagnostic evaluation is needed.

Learn about developmental milestones for children ages 2 months to 5 years >>

Comprehensive Diagnostic Evaluation

The second step of diagnosis is a comprehensive evaluation. This thorough review may include looking at the child's behavior and development and interviewing the parents. It may also include a hearing and vision screening, genetic testing, neurological testing, and other medical testing.

Early Intervention Services

Research shows that early intervention treatment services can improve a child's development 2, 3. Early intervention services help children from birth to 3 years old (36 months) learn important skills. Services include therapy to help the child talk, walk, and interact with others. Therefore, it is important to talk to your child's doctor as soon as possible if you think your child has an ASD or other developmental problem.

It is not necessary for your child to have a diagnosis to get early intervention services. Even if your child has not been diagnosed with an ASD, he or she may be eligible for early intervention treatment services. In addition, to access treatment for particular symptoms, such as speech therapy for language delays, you do not need to wait for a formal autism diagnosis. Early interventions services are provided free or at reduced cost in every state. While early intervention is extremely important, intervention at any age can be helpful.

Learn more about early intervention »

More Information

References

  1. Lord C, Risi S, DiLavore PS, Shulman C, Thurm A, Pickles A. Autism from 2 to 9 years of age. Arch Gen Psychiatry. 2006 Jun;63(6):694-701.
  2. Handleman, J.S., Harris, S., eds. Preschool Education Programs for Children with Autism (2nd ed). Austin, TX: Pro-Ed. 2000.
  3. National Research Council. Educating Children with Autism. Washington, DC: National Academy Press, 2001.
  • Page last reviewed: April 9, 2012
  • Page last updated: April 9, 2012
  • Content source:
    • Office of the Associate Director for Communication, Digital Media Branch, Division of Public Affairs
    • Page maintained by: Office of the Associate Director for Communication, Digital Media Branch, Division of Public Affairs
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