Raising a Child With a Developmental Disorder — Understand the Signs and Know Your Resources

Jennifer Shapiro* had a feeling something wasn’t quite right with her infant son, Timothy. When she looked closely at him, his eyes rarely focused on hers. When she smiled at him, he seemed in a daze, never mirroring the gesture or the joy in her eyes. Timothy was Jennifer’s first child, and she was unsure whether her gut-level concerns — why does something just feel off? — were warranted. With the help of her pediatrician, Jennifer had Timothy evaluated by a team of early childhood experts, who discovered he was exhibiting a cognitive and social-emotional delay. Two years later, he was reevaluated and diagnosed with autism spectrum disorder. These were hard truths to swallow, but identifying them early was key, as it allowed Timothy to receive important treatments at a crucial developmental stage — treatments that would substantially improve his performance at school and his interactions with his peers.

According to the Centers for Disease Control and Prevention, approximately one out of six children in the US is diagnosed with a developmental delay or developmental disability. These are defined as cognitive, social, emotional, or physical challenges prior to or after age three, respectively. Not all delays warrant a diagnosis. However, when left unaddressed, these delays may set a child up for increased challenges as they grow older.

Identifying a Problem

Discerning whether your child or grandchild has a delay or is just taking longer to reach a milestone is tricky. But several red flags during their first years of life can be telling. You probably have grounds to be concerned “if your infant isn’t able to track objects with his eyes; hold her head up consistently when placed on her tummy; and isn’t babbling, cooing or beginning to say words by age 1,” explains Laurie Zelinger, Ph.D., a board-certified school psychologist and author of Please Explain “Terrorism” to Me! Not smiling by six months of age, resisting or reacting strongly to being soothed, and not showing interest in others or their surroundings are other signs that an infant may have a developmental delay or be at risk for a disability later in life.

Knowing the Signs

By age two, if your child or grandchild is not pointing to things she wants, cannot stack blocks, or is struggling to form basic sentences (like, “want more juice”) and follow simple instructions (think: “Bring Mommy the ball”) they could be experiencing a cognitive delay, Zelinger adds. Equally indicative is if a child cannot engage in joint attention — looking to where a caregiver is looking or looking to and from a caregiver and a toy while playing. Once age three rolls around, difficulties in walking, running, and feeding become reasons to worry, says Robert Goldman, Psy.D, J.D., chief psychologist and co-CEO of TLC Virtual Resiliency. So does avoiding eye contact, being disinterested in peers, or performing “stereotyped” behaviors (such as hand flapping, swaying, spinning or rocking) at any age.

Hypersensitivity to touch or sound and difficulties sucking, swallowing, or breathing and extreme pickiness once solid foods become introduced can also be warning signs of a delay
or disability, says Ari Yares, Ph.D., a nationally certified school psychologist in Washington, D.C. If you notice any of these signs, don’t wait too long to contact your pediatrician, Goldman advises. Your doctor can screen your child for delays or disabilities and refer you to an early-intervention or special-education program that, per the Individuals with Disabilities Education Act (IDEA), must offer free evaluations and services for qualifying families. Each state also has Parent Training and Information Centers (PTIs). These provide parents with support and education related to disabilities as well as guidance on obtaining services. Do an internet search for your local PTI to get started.

Getting Help

Research shows that many evidence-based treatments can help address developmental disorders and delays. Speech therapy helps children produce, articulate, and better comprehend language — and can help with feeding issues, like chewing and swallowing. Physical and occupational therapy address gross and fine motor skills. And behavior therapies help reinforce desired behaviors (sharing, sitting still and making eye contact) and reduce troubling ones (biting or hitting).

While most developmental disorders cannot be entirely resolved through treatment, addressing them early can reduce just how much of an impairment individuals may experience throughout their lives. It also improves their ability to function and be more independent at home, in school, at work and in social settings. Ideally, children should start treatment before beginning school. “Early intervention is especially important during children’s first five years of life, when their brains are rapidly developing new connections and are at their most malleable,” says Yares. “The data shows that getting kids support by preschool age or sooner has an impact on their learning and outcomes later in life.”

Children diagnosed with autism spectrum disorder (ASD) can especially gain from early intervention. Applied behavior analysis (ABA) is the most common treatment for ASD. It entails planning and assessment of goals. These range from basic communication skills (e.g., asking for a desired item) to emotion regulation (counting to 10 when angry instead of throwing
or breaking objects). ABA therapists reward desired behaviors and ignore undesired ones. “Social-skills training and providing opportunities for children to engage with peers who don’t have a diagnosis of autism have also been shown to help children with autism learn to model appropriate social behavior,” adds Goldman.

Common Autism Myths

Autism spectrum disorder (ASD) refers to a range of impairments in cognitive, behavioral, communication and social-interaction abilities. Approximately one in every 44 children in the US meets the criteria for autism. Though awareness about autism has increased in recent years, there are still many common misconceptions about the disorder. Here are a few of the biggest that advocates and professionals are working hard to dispel.

Myth #1: Vaccines can cause autism.

Numerous studies have disproved the false link between vaccines and autism, popularized by a now discredited doctor in the late 1990s. Put simply: There is no connection between getting your child vaccinated and an increased risk of autism. And not vaccinating your child puts her at a much greater risk of getting seriously ill. This is one reason why there has been a resurgence of infectious diseases, such as mumps and whooping cough, throughout much of the US.

Myth #2: Autism looks the same in every case.

“Autism spectrum disorder is a complex collection of symptoms, and not every child exhibits every one,” explains Yares. “Children may receive a diagnosis range from high-functioning to low-functioning.” Some may be incredibly gifted in a specific area. Approximately one in every 10 cases of autism exhibits “savantism” — yet struggle to express empathy and connect with peers. Others may experience severe delays in learning, communication, emotion-regulation and self-help skills.

Myth #3: People with autism don't feel empathy.

Autism itself is not a barrier to empathy. Rather, a condition called alexithymia — which is more common among individuals with autistic spectrum disorder — can make understanding and identifying emotions difficult. About half of all individuals with autism meet the criteria for alexithymia.

Where to Get Help

The following websites and organizations provide a wealth of knowledge and guidance for parents concerned about potential delays or disabilities.

A version of this article appeared in our partner magazine The Science of Raising Happy Kids.

* Names have been changed for privacy.