At 15 months old, James had not yet begun to speak. His mother, Michelle Lederman, was not particularly worried, but she decided to do the prudent thing and have him evaluated for a speech delay.
When the speech therapist recommended a second, more comprehensive evaluation, “I said, ‘Sure, go ahead!’” Michelle recalls. “Our speech therapist kept saying it was behavioral, but I really wasn’t sure what that meant.”
Months later, James was diagnosed as being on the autism spectrum. Autism is a neurologically based developmental disability that according to the Centers for Disease Control and Prevention affects one in 150 children in the United States.
James was lucky. Because he was diagnosed before the age of 2, he was able to begin receiving crucial early intervention services that, for many children, can change the course of their lives. According to the New York State Department of Health Early Intervention Program, intensive behavioral approaches, when started at an early age, may significantly improve outcomes for children with autism.
In fact, this explains why the American Academy for Pediatrics adopted a new guideline that all children be screened for autism spectrum disorder twice before age two — once at 18 months and once at 24 months — as part of well baby checkups. It also recommends that treatment for autism be started when autism spectrum disorder is suspected, rather than when a formal diagnosis is made.
But a diagnosis of an autism spectrum disorder can only occur if parents, caregivers and doctors and other professionals know what to look for.
Like most children on the autism spectrum, James has experienced a significant speech delay, which is a prominent indicator for autism. It is also the aspect of the disability that families often have the most difficulty coming to terms with.
“One of the he biggest fear for families whose child is more recently diagnosed is: ‘Will my child ever talk?’” said Hilda Chusid, Early Intervention Supervisor of the LifeStart program at the New York League for Early Learning, a member of the YAI/National Institute for People with Disabilities Network. LifeStart offers early intervention services for newborns through age three. “Parents wonder, ‘If my child doesn’t have the words to tell me he’s in pain, how will I know? If my child goes on the school bus and something happens to her, how will I know?’ ”
For families, speech delays may be the most obvious sign that their children aren’t developing typically. However, parents are also advised to consult a physician if their child exhibits any of the following tendencies:
- No response to name
- Repetitive and excessive use of words, phrases, mannerisms or gestures
- Little or no eye contact
- Lack of interest in making friends
- Lack of spontaneous or make-believe play
- Persistent fixation on parts of objects
When parents call Hilda wondering if their children need evaluations, she tries to be as helpful, and as realistic, as possible.
“Evaluations, the first step in determining a child’s diagnosis, are stressful for parents because of the fear that a professional will tell them that there is something wrong,” Hilda said. “The most difficult part comes when they learn that their fears have been confirmed. Then they have to figure out how they are going to help their child—and how they are going to deal with this.”
Unfortunately, parents sometimes ignore the signs of autism. They may attribute their children’s lack of speech to being a “late bloomer.” Or they may try to rationalize away their children’s developmental delays when they see typically developing children of friends or relatives begin to speak later than usual.
Carol Stein-Schulman, Assistant Director of Education and Training for the New York League for Early Learning, explains that parents sometimes miss crucial indicators for autism because their children appear to be good, easy babies, who play in their cribs without fussing.
“Parents need to see whether their children are understanding language,” Carol said. “You want to make sure that by approximately 12 to 18 months of age, they are interacting with their primary caretaker. If all they want to do is sit in the corner and arrange their cars or play with the string on the rug, it might be a red flag.”
Carol advises parents to watch for certain behaviors that can vary with each child’s development: By about six months, babies should have big smiles and be able to express warmth and joy; by around nine months, they should be able to engage in reciprocity of sounds, smiles and other facial expressions; by approximately 12 months, they should be babbling; and by about 16-18 months, they should be able to form at least some words.
And anytime there is a loss of speech or social skills, parents are advised to consult a pediatrician or developmental pediatrician for an evaluation.
“The good news is that early intervention is here,” Carol said. “We didn’t have it 30 years ago. If there’s a delay it gives the child a good start on the right path to learning how to communicate and interact appropriately.”
Cultural factors and language barriers can also hinder early identification of an autism spectrum disorder. The shame that some cultures still associate with disability and a lack of information and services in non-English languages often create further barriers for first-generation Americans on the autism spectrum and their families.
According to the Centers for Disease Control and Prevention:
Developmental Milestones for a Typically Developing Three-month-old
- Smiling at caretakers and loved ones.
- Lifting his or her head when lying on the belly.
- Gazing intently at faces.
- Smiling at the sound of familiar voices.
Developmental Milestones for a Typically Developing Seven-month-old
- Enjoying social play.
- Transferring objects from hand to hand.
- The ability to follow moving objects with his or her eyes.
- Responding to his or her name.
- Finding partially hidden objects. Developmental milestones for a typically developing one-year-old
- Enjoy initiating play with peers and family members.
- Sit up by themselves.
- Bang objects together.
- Respond to simple verbal requests.
Marni Goltsman and her husband say that they “weren’t super concerned” when their 18-month-old son Shafer still wasn’t talking or playing with other children. A pediatric neurologist evaluated Shafer and diagnosed him with a pervasive developmental disorder. “We didn’t even know what pervasive developmental disorder was,” Marni recalled.
The doctor recommended 20-25 hours a week of early intervention services, including speech, occupational and physical therapies.
“A part of me was comforted that we were finally going to get some help,” she said.
Today, Shafer is 5 and doing extremely well, thanks in part to the intensive early intervention he began receiving before he was 2.
“My advice to parents is to get their children evaluated,” Marni said. “There’s no downside. If it’s nothing, it’s nothing; but if it’s something, it makes tremendous difference to get help early.”
“Don’t wait,” adds Michelle Lederman. “Do not wait. It does not take anything away from you to have your child evaluated immediately. The sooner your child begins receiving services, the better.”
Today, Michelle is thrilled to see James developing language skills. “He now has more words than I can count and he just started putting two words together,” she said.
But she can’t help but wonder what progress James might have made if he had received intensive therapies sooner.
“I’m now at a place where I balance reality with optimism. The reality is this is not a six-month or one-year thing; he’ll need years of therapy and support, but that won’t prevent him from having a full and happy life.”
Bernadette Flynn, EdD, is Director of the New York League for Early Learning, a member of the YAI/National Institute for People with Disabilities Network. For more information on evaluations and services for children and adults with autism spectrum disorders, please contact YAI LINK at 1-866-2-YAI-LINK; TDD: 212-290-2787, firstname.lastname@example.org or visit www.yai.org.