By Collin Huth’s 18-month checkup, his mother, Kristina Huth, had some concerns about his development. He wasn’t talking. He didn’t take interest in playing with other kids. He would turn his head and stare at the wall in a way she hadn’t seen other children do. Even though he passed a routine screening for autism, Huth, a stay-at-home mom in Katy, Texas, had a feeling something was off. She asked for — and got — early speech therapy for her son and made appointments for an autism evaluation. When he was 2, he was officially diagnosed with autism spectrum disorder, and after some insurance-related delays, was able to get specialized behavioral therapy starting when he was 3. It was intense: five days a week, eight hours a day. “He had a full-time job,” she says. But the hours and the copays were worth it. “Within a month, he was stringing words together in a sentence,” Huth says. “It was the best decision.”
When it comes to autism, early identification is crucial. It helps kids get needed services as soon as possible and enables physicians and parents to keep an eye out for issues that commonly tag along, such as sleep and eating problems. The American Academy of Pediatrics emphasized that point recently in a comprehensive clinical report on autism, now known as autism spectrum disorder, or ASD, which includes autistic disorder, Asperger’s syndrome and two other conditions.
Estimated to affect 1 in 54 children, ASD is characterized by challenges with social communication and relationships and restricted, repetitive behaviors such as rocking. While research suggests that the condition begins before birth, its signs may not be apparent until a child is moving from infancy to toddlerhood. So the AAP recommends that pediatricians keep tabs at well-child visits on whether kids are meeting age-appropriate milestones such as using a finger to point to things and recognizing their own name. At 18- and 24-month visits, pediatricians should actively screen for ASD by asking parents a specific set of questions, such as whether a child is interested in playing with other kids.
Children who are flagged by either developmental surveillance or screening don’t necessarily have autism, but they should be referred to a specialist, such as a developmental pediatrician or psychologist, who can do the more intensive work of actually diagnosing ASD and prescribing necessary services. (The AAP says general pediatricians and child psychologists who are comfortable with the criteria can also make an initial diagnosis.) There’s a consensus that a diagnosis at around 18 months is reliable, and some in the field say it can be made even earlier in certain cases. With a very careful evaluation, says Carol Wilkinson, a behavioral pediatrician at Boston Children’s Hospital, “we are comfortable diagnosing kids at 15 months or even earlier.” That’s especially true if a child already shows signs of repetitive, restrictive behaviors, reduced social interactions or language delays, she says.
A 2019 study published in JAMA Pediatrics found that while about 50% of children diagnosed with ASD at 12 or 13 months retained that diagnosis over the next couple of years, the proportion increased to 79% and 83% for children diagnosed at 14 months and 16 months respectively. Other kids were diagnosed with different developmental or speech issues. About 2% of kids who were initially flagged as having ASD were later identified as having typical development. Whatever the issue, it’s important for all kids who are identified with delays to get treatment, says the study’s first author Karen Pierce, a professor of neurosciences at the University of California–San Diego and co-director of its Autism Center of Excellence. “You don’t need to wait for a diagnosis [of ASD] if you have developmental concerns,” says Susan Hyman, lead author of the AAP report and division chief of developmental and behavioral pediatrics at University of Rochester-Golisano Children’s Hospital.
Kids’ brains are extremely malleable. Neural connections are being formed and fine-tuned, and foundational skills are developing all the time. The earlier that important building blocks can be taught, such as following a person’s gaze or finger, the more likely children are to develop functional skills such as communication, Wilkinson says. There is research suggesting that early versus later intervention for ASD is better, but as of yet, no large, long-term, randomized, controlled trials have compared the timing factor. The U.S. Preventive Services Task Force said in 2016 that there wasn’t enough evidence to assess the balance of benefits and harms of early ASD screening. But the group also said that any harms would likely be minimal. Interventions at a young age aim to “stimulate language, interaction, imitation and play,” says Walter Zahorodny, a psychologist and associate professor of pediatrics at Rutgers New Jersey Medical School. Those services can be accessed through states’ Early Intervention programs or through schools, for kids over 3. And there are private options as well.
The Insurance Factor
Certain autism-specific interventions do require a diagnosis to be covered by insurance. Many programs designed for very young kids use a play-based, developmental approach based on applied behavior analysis, or ABA, which works to achieve individualized goals through rewards for behaviors such as making eye contact, say, or identifying an object.
Danielle Denneen’s twins, a boy and a girl, now 5, received speech therapy after qualifying for Early Intervention services at 18 months. When they were 2, they were both diagnosed with ASD and met the requirements for ABA, which was provided in their home in Norwood, Massachusetts, for 20 hours each week. (The state covered the cost until age 3.)
Denneen says the approach was tailored to each child’s own goals and was naturalistic and play-based, using positive feedback to encourage some behaviors and discourage others. She and her husband did copious research before picking a program and therapists. “We really found someone who fit our lifestyle and our thoughts around therapy,” she says. “Once we saw progress and saw that the children were happy, it made a huge difference.” (Hyman says that when kids are old enough, they should participate in decisions about interventions.)
One reason the AAP advises an early start is that it can take a while to connect kids to services due to wait lists, provider shortages and other gaps. A 2019 study in Pediatrics looked at 290 Texas primary care providers and found that pediatricians were screening children at high rates — 93% at 18 months. But only 31% of kids flagged by screening were referred to a specialist, and many weren’t referred until after age 3. Some physicians may use a wait-and-see approach to avoid scaring parents, but that can delay kids receiving interventions, says Sonia Monteiro, an author of the study and a developmental pediatrician at Texas Children’s Hospital. (She’s also Collin’s doctor.) “Screening is good, but it’s only as good as what you’re going to do with that information,” she says. In addition, many parts of the country lack qualified professionals to diagnose children, which can mean long waits for appointments, Zahorodny says.
[Read: Autism Statistics.]
Experts say early interventions don’t help every child. “I can’t make a diagnosis of autism at 15 months and promise that with 25 hours of intense therapy a week, the child will hit certain milestones,” Wilkinson says. Among her patients who have benefited: Denneen’s twins, now thriving in preschool. Her son no longer receives any special services, and her daughter made huge strides with therapy. “If we hadn’t gotten those services early for her, things could have gone a completely different way,” Denneen says.
The early start that Collin received helped him pick up new skills and made their home life much easier, Kristina Huth says. Now he’s in kindergarten, sharing an aide with a few other kids in the class and receiving outside help only in social skills once per week. Huth’s advice to other parents? If something feels off, follow up on it — even if a child passes a screening test. “Trust your gut and intuition.”
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