by Nancy Volkers
Reprinted from The ASHA Leader, April 2016, Vol. 21, 44-49.
Fifteen-month-old Charlie is watching his mother blow bubbles. He points at the bubbles, laughs and looks at the adults sitting at the table with him. When given the bottle of bubble liquid, Charlie tries to open it; he grunts and says “stuck,” then offers it to an adult for help.
Luke, who is 16 months old, focuses only on the bubbles, even when the adults call his name. With one hand, he half-heartedly twists the bottle back and forth on the table. Finally, he offers it to an adult. He never makes a sound or changes expression.
Charlie and Luke are being evaluated with an assessment called the Communication and Symbolic Behavior Scales Developmental Profile (CSBS-DP). Developed by Florida State University’s Amy Wetherby (a distinguished research professor there) and Brown University’s Barry Prizant, the assessment helps to identify children younger than 2 who are at risk for a communication impairment.
The two toddlers, and at least a dozen others, are featured in the video library of Autism Navigator’s “About Autism in Toddlers” module. Created at Florida State University by Wetherby and colleagues, Autism Navigator is a collection of Web-based tools and resources that uses extensive video footage to help providers and parents bridge the gap between science and community practice.
Many toddlers diagnosed with ASD who receive early intervention can attend regular kindergarten, cutting annual education costs by $10,000 per child, according to Autism Navigator. The Autism Society of the United States says that early intervention can reduce the lifetime cost of care by 67 percent.
The “About Autism in Toddlers” module is designed to show some of the early behaviors that may indicate autism spectrum disorder (ASD). A child diagnosed with ASD before age 3 has access to early-intervention services provided by speech-language pathologists and others, as specified in the Individuals With Disabilities Education Act. Compared with treatments offered later in life, early intervention for ASD appears to carry a greater chance for academic, vocational/career and social success and potentially lower education costs. But today, only 20 percent of U.S. children are diagnosed before age 3; the average age at diagnosis falls somewhere between 4 and 5 years old.
Autism Navigator’s developers hope that it and other tools will aid SLPs and other professionals in earlier diagnosis of children with ASD. Even in areas where early intervention services aren’t widely available, earlier identification of ASD will likely prompt their growth, says Elizabeth Crais, professor of speech and hearing sciences at the University of North Carolina (UNC), Chapel Hill. “School districts and early intervention programs are beginning to respond because they know they have to provide services,” she notes, adding that some states also have made changes mandating insurance coverage for ASD services—not the case in the past.
SLPs’ crucial role
Many toddlers diagnosed with ASD who receive early intervention can attend regular kindergarten, cutting annual education costs by $10,000 per child, according to Autism Navigator. The Autism Society of the United States says thatearly intervention can reduce the lifetime cost of care by 67 percent.
SLPs can and should be an integral part of early diagnosis, according to Stephen Camarata, professor of hearing and speech sciences at Vanderbilt University School of Medicine. “One of the primary reasons, if not the primary reason, to refer a child for an autism assessment is because the child is not speaking,” he said. Because concerns about speech development can occur as early as age 2, this is one opportunity to identify children with ASD. “It’s vitally important that an SLP be involved [in these cases],” said Camarata. “If a child is not speaking, it could be autism, but it also could be hearing loss, an intellectual disability or a language disorder.”
The Diagnostic and Statistical Manual, Fifth Edition (DSM-5), provides criteria to diagnose ASD. The two sets of criteria involved are related to social communication deficits and restricted, repetitive patterns of behavior, interests or activities (see “ASD Diagnosis Criteria,” below). Multiple assessment tools have been tailored for use with younger children (see “Diagnosis Tools” online).
Crais agrees that an SLP often will be the first professional to raise the autism question. “It is within the scope of practice [to diagnose ASD], if you have the skills and knowledge and your state allows it,” she says.
Camarata recommends that SLPs check with their state licensing board or with ASHA to determine if they can provide a primary ASD diagnosis. “Even if [the SLP] isn’t involved at the time of diagnosis, they definitely should be part of a clinical team,” he says.
“If a child is not speaking, it could be autism, but it also could be hearing loss, an intellectual disability, or a language disorder.”
SLPs always can be important advocates for parents who have concerns about their young children, says Linda Watson, professor of speech and hearing sciences at UNC-Chapel Hill.
“Some SLPs may be told not to mention ‘the A word’ to parents,” she says. “But a knowledgeable clinician should raise concerns with families. We shouldn’t tie people’s hands by telling them not to talk about it.”
Identifying at-risk infants
As clinicians work toward more early diagnosis in toddlers, researchers are looking for ways to diagnose children even earlier—as babies.
“Recent reports are showing that even in the first year of life, and certainly during the second year, there are characteristics that can be seen,” Crais says. “And if clinicians, parents and speech-language pathologists know what to look for, the result is getting services for more children.”
During the first year, eye gaze, babbling and feeding issues all have been identified as possible risk indicators. For example, research by Warren R. Jones and Ami Klin published in Nature found that children later diagnosed with ASD tended to make less eye contact with their mother or caregiver as infants (2 to 6 months), compared with children who developed normally.
Although a 3-month-old who doesn’t make much eye contact may not seem alarming, it can disrupt natural parent-child interactions, says Crais. “The first year of life is when babies should be looking at other people and learning,” she says. “If the child isn’t interacting, the parent may be giving less input to the child.”
Like Jones and Klin, Crais and Watson have used retrospective video analysis in their research, collecting early home videos from families who have children later diagnosed with ASD. Crais and Watson have found several distinctions between these children and those who develop in a typical way, as well as those with other developmental delays.
“The first year of life is when babies should be looking at other people and learning. If the child isn’t interacting, the parent may be giving less input to the child.”
For example, when children with ASD are very young, they don’t babble at all or as much as other babies. “They may not say ‘ba-ba-ba’ or ‘ga-ga-ga,’” Watson says. And that affects how parents interact. “When infants start using those sounds, parents’ responses become more ‘language-like’—and that’s better for language-learning. So if a baby is not babbling, you may be eliciting fewer language-learning opportunities.”
Feeding issues may send infants to SLPs long before there are concerns about language delays, says Watson. This is an opportunity to use a screener tool, in concert with observation. The SLP, she says, “can observe whether the infant is developing the expected prelinguistic communication, as well as using varied gestures for varied purposes”—such as requesting things, refusing things, showing objects to others and playing social games.
Awareness and intervention
Early identification, then, could help parents learn to plan and initiate some otherwise spontaneous interactions with their children, possibly improving outcomes. Autism Navigator illustrates this concept in multiple videos that show parents taking advantage of “teachable moments.” This type of effort, combined with sustained professional intervention, can help children with ASD.
However, it may be difficult to run controlled trials that can show the effects of early intervention, because families randomized to the control group are still aware that they have a child at risk for ASD.
Watson sees the positive side of this caveat. “In our study, equal numbers of families in both groups [intervention and control] sought community services for their 1-year-olds,” she says. “If they weren’t in the study, they probably wouldn’t even be aware of the risk. So just making parents aware also makes them better advocates.”
Crais agrees. “More studies, including ours, have shown that parents learn more about their children and are more proactive and responsive.”
To be diagnosed with ASD, a child must show three types of impairments in social communication and interaction, according to DSM-5:
- Deficits in social-emotional reciprocity—difficulty having back-and-forth conversation; reduced sharing of interests or emotions; failure to initiate or respond to social interactions.
- Deficits in nonverbal communication—trouble integrating gestures and language; poor or no eye contact/body language; little or no change in facial expression.
- Deficits in developing, maintaining and understanding relationships—difficulty adjusting behavior to different contexts; problems sharing in imaginative play; difficulty making friends; lack of interest in peers.
The child also must show at least two of the following four types of restrictive or repetitive patterns of behavior:
Repetitive movements, speech or use of objects—hand-flapping or other repetitive body movements; repeating the same phrase; lining up toys or flipping objects.
Insistence on sameness (inflexible routines), or ritualized patterns of verbal or nonverbal behavior—extreme distress at small changes in routine; difficulty with transitions; need to travel the same route or eat the same food every day.
Highly restricted, fixated interests that are abnormal in focus/intensity—the child likes trains, for example, and is focused on collecting, building, playing with, and talking about trains at the expense of all other toys or topics of conversation.
Over-reaction or under-reaction to sensory input, or unusual sensory interest—indifference to pain or temperature; adverse response to certain sounds or textures; fascination with certain lights or movements; fixation on smelling or touching objects.
Finally, the impairments must:
Be present in early development.
Cause impairment in social, occupational or other areas of functioning.
Not be better explained by intellectual disability or global developmental delay.
Note that there is no longer a criterion for language delay. People with an earlier (DSM-IV or previous) diagnosis of autistic disorder, Asperger syndrome or PDD-NOS should now be given a diagnosis of ASD.
Several tools and assessments are available to aid in diagnosis of children under 4. They include:
M-CHAT (Modified Checklist for Autism in Toddlers). This is the most popular tool, according to Elizabeth Crais of the University of North Carolina.Designed for children 16–30 months, the questionnaire can be administered during a well-child physician visit or completed online by a parent. High scores initiate recommendations for follow-up. The latest version, M-CHAT-R/F, has a reduced false-positive rate, compared with the original M-CHAT. A 2013 study by Diana L. Robins and colleagues in Pediatrics found that 2 percent of 16,000 toddlers screened at well-child visits with M-CHAT-R/F required a full evaluation by a specialist. Of those, 95 percent were diagnosed with ASD.
CSBS-DP (Communication and Symbolic Behavior Scales Developmental Profile). The CSBS-DP is used with children 6 months to 6 years who have a functional age of 6–24 months. It can help to identify those at risk for communication impairment, and to monitor changes over time. The tool consists of a 24-item checklist, a four-page caregiver questionnaire and a behavior sampling taken with a parent present.
ADOS-2 (Autism Diagnostic Observation Schedule, newest version). Although ADOS is considered the “gold standard” for ASD diagnosis, it is not as helpful in younger children. Its toddler module, for assessing children 12–30 months, consists of 30 to 45 minutes of observation and focuses on communication, reciprocal social interaction, object use and play skills.
STAT (Screening Tool for Autism in Toddlers). This assessment, for children 24–36 months, consists of 12 items and takes about 20 minutes to administer.
Autism Navigator. This website includes family resources and a module, “About Autism in Toddlers,” that uses extensive video footage to illustrate the differences between young children with ASD and those developing normally. The site plans to soon launch professional development courses, online courses for families and social development growth charts.
A government panel, despite finding adequate evidence that “currently available screening tests can detect ASD among children aged 18 to 30 months,” does not recommend universal screening of young children for autism spectrum disorder, saying more evidence is needed to make a recommendation on its benefits and harms.
The U.S. Preventative Services Task Force (USPSTF) released a draft proposal on ASD screening in 2015 with the same recommendations. In its comments on the draft, ASHA took exception with the recommendation, which conflict with American Academy of Pediatrics guidelines recommending screening for all children at ages 18 and 24 months. The task force did not accept ASHA’s suggested additional wording about the efficacy of ASD tests and that early identification and intervention is critical.
The final recommendation states that for children 18–30 months, “The USPSTF concludes that the current evidence is insufficient to assess the balance of benefits and harms of screening for autism spectrum disorder (ASD) in young children for whom no concerns of ASD have been raised by their parents or a clinician.”
Supporting information for the recommendation, however, clearly states that the task force is not recommending against universal screening, but calling for more research about its impact. Until the research is available, it advises health care providers to use their clinical judgment in deciding who and when to screen.
The 16-member task force of mostly health care epidemiologists and clinical scientists was assembled by the Agency for Healthcare Research and Quality, a division of the U.S. Department of Health and Human Services. Its recommendations often have widespread implications in driving practices and determining reimbursement policies.