Updated: May 11, 2021
The American Academy of Pediatrics just updated their guidelines for primary care providers to diagnose and treat autism. The report describes the central role that speech-langue pathologists play in both diagnosis and treatment of ASD.
The report is 64 pages of small print. I’ve read it and summarized the parts that I found the most interesting for readers of The Interaction Coach. You’re welcome.
Autism occurs in 1 in every 59 children in the U.S. Primary care providers are in a critical position to identify children early so they can begin receiving services as soon as possible. Providers should also work to improve the lower identification rates in children from African American and Hispanic homes.
Autism is neurologically based, meaning it comes from a difference in the brain. No one has yet figured out how to diagnose ASD based on looking at brains, though. We base the diagnosis on behaviors that result from the brain differences.
The core symptoms of autism cluster around two domains: social communication/interaction and restricted/repetitive actions. About 25% of children with ASD show regression in language or social skills between 18–24 months, 30% have intellectual disability and 30% are minimally verbal.
It’s not currently possible to predict the future development of a child when the ASD diagnosis is given. Children diagnosed before age 3 keep that diagnosis 80% of the time, but symptoms may decrease.
Features of children whose diagnosis changes later include: higher cognitive skills at age 2, participated in earlier intervention services, decrease in repetitive behaviors
For adults with high-functioning autism, their quality of life was more related to having family and community supports rather than their ASD symptoms.
SCREENING AND DIAGNOSIS
ALL children should be screened for symptoms of ASD because it is so common and early intervention is proven to have a big effect on long-term outcomes.
Primary care providers should observe for symptoms at every visit. A standardized, autism-specific screener should be used at the 18- and 24-month wellness visits.
Just observing at office visits is not enough Children may not show typical behavior in a short office visit and parents may not bring them up. Using a standardized screening tool has been demonstrated to be much more accurate than physicians’ observations.
Doctors report they are using screening more often than in the past. However, they report problems with following up on screening results and making referrals for evaluations.
Red flags for autism
By 12 months: Does not respond to name
By 14 months: Does not point at objects to show interest
By 18 months: Does not pretend play
Avoids eye contact and may want to be alone
Has trouble understanding other people's feelings or talking about their own feelings
Has delayed speech and language skills
Repeats words or phrases over and over (echolalia)
Gives unrelated answers to questions
Gets upset by minor changes
Has obsessive interests
Makes repetitive movements like flapping hands, rocking, or spinning in circles
Has unusual reactions to the way things sound, smell, taste, look, or feel
As soon as a child is found to be at risk for an ASD diagnosis, they should be referred for two things: a clinical diagnostic evaluation AND treatment in early intervention or school services. At-risk could mean an older sibling has a diagnosis or the child is showing red flags.
“Although most children will need to see a specialist, such as a developmental-behavioral or neurodevelopmental pediatrician, psychologist, neurologist, or psychiatrist, for a diagnostic evaluation, general pediatricians and child psychologists comfortable with application of the DSM-5 criteria can make an initial clinical diagnosis.”
Diagnosis includes formal assessment of language, cognitive, and adaptive abilities and sensory status. Genetic testing is not used to diagnose autism. Genetics may explain the cause of some types of autism and, in that case, can provide information about the statistical risk of ASD in siblings.
A speech-language pathologist should be on the evaluation team. “Inherent in the core symptoms of ASD are differences in the use of verbal and nonverbal communication for social interaction. Formal assessment of communication by a speech or language pathologist at the time of diagnosis should include the documentation of expressive and receptive language skills as well as the pragmatic or conversational use of language.”
Treatment has three goals:
Minimize the core deficits in social communication and interaction and restricted or repetitive behaviors and interests and the impairments that result from these core deficits.
Maximize functional independence by helping the child learn adaptive (self-help) skills.
Eliminate, minimize, or prevent problem behaviors that may interfere with functional skills.
Treatments should be individualized, developmentally appropriate, and intensive. Data should be used to monitor progress and adjust intervention as needed.
All interventions should be based on sound theoretical constructs, rigorous methodologies, and objective scientific evidence of effectiveness. There are several options to choose from which are provided through educational programs, developmental therapies, and behavioral interventions.
Families should be involved in the selection of intervention approaches and remain an involved participant in subsequent educational and therapeutic decisions. Regions of the country vary in how available each of these options are.
Two theoretical models are most common in treatment: ABA and developmental models.
“A comprehensive ABA approach for younger children, also known as early intensive behavioral intervention, is supported by a few randomized controlled trials (RCTs) and a substantial single-subject literature. When only RCTs are considered, few interventions have sufficient evidence to be endorsed either for children younger than 12 years or for adolescents.”
“Through interaction with others, children learn to communicate and regulate emotions and establish a foundation for increasingly complex thinking and social interaction. Therefore, developmental models designed to promote social development in children with ASD are focused on the relationship between the child with ASD and his or her caregiver through coaching to help increase responsiveness to the adult (ie, the interventionist or parent or caregiver) through imitating, expanding on, or joining into child-initiated play activities. This approach may address core symptoms of ASD, such as joint attention, imitation, and affective social engagement.”
The paper describes naturalistic developmental behavioral interventions (NDBIs) as a combination of elements from both ABA and developmental principles. Characteristics of NDBIs are summarized as:
Learning targets are based on a developmental progression.
Social learning is the foundation for learning.
Teaching takes place in the context of naturally occurring social activities within natural environments.
Teaching episodes are child-initiated and naturally occurring.
Teaching involves turn-taking interactions within play routines.
Goals are measurable using ABA-based approaches
“Increasing evidence reveals that focused interventions delivered by trained parents or other caregivers can be an important part of a therapeutic program.” More randomized controlled trial studies have been published on parent-mediated therapies than on other non-drug interventions.
Parent-mediated interventions teach techniques for parents to use with their child in natural settings. “Training sessions for caregivers may be delivered in the home, clinic, school, or other community settings or remotely by telehealth.”
SPEECH AND LANGUAGE INTERVENTIONS
“Delayed language is an early concern for many children who are later diagnosed with ASD. The communication symptoms included in the DSM-5 criteria for ASD reflect core deficits in social communication and interaction, such as failure of back-and-forth communication, deficits in nonverbal communication (such as eye gaze and use of gesture), difficulty adjusting behavior to suit the social context, and restricted and repetitive behaviors leading to perseverative vocalization, echolalia, and preoccupation with restricted topics of interest.”
“All children with ASD should have documentation of specific coexisting speech and language diagnoses so that appropriate intervention might be provided.”
“Speech-language therapy is the most commonly identified intervention provided for children with ASD.”
Up to 30% of persons with ASD do not acquire spoken language. This is sometimes related to cognitive delay or a speech disorder like childhood apraxia of speech. Using spoken phrases before age four is a good predictor of language development, but spoken phrases can develop up to at least age ten — especially in children who have good nonverbal skills and social engagement.
“When children do not spontaneously speak, augmentative and alternative communication (AAC) may be introduced. Examples of AAC strategies include sign language, the Picture Exchange Communication System, and speech-generating devices.The use of AAC may help promote social interaction and understanding of the purpose of communication and does not delay onset of speech. Indeed, it may enhance emergence of spoken words by pairing nonverbal and verbal communication.”
Just having a device is not enough. There must be a plan to teach the person to use it in a variety of situations for a variety of purposes.
Pragmatic (social) language deficits affect social interaction, academic performance and behavior. School-age children should have their pragmatic language assessed as part of their school-related reevaluations. Research supports the use of interventions for social skills and social language.
The most important recommendation in this report is that primary care providers MUST NOT delay taking action when signs of risk for autism are noted. They must observe for signs at every visit, and use a standardized screener at 18 and 24 months. (Ask your provider what they use.)
Another important recommendation is the required role of SLPs in evaluation and treatment. The report recognizes that SLPs are the professionals who are qualified for testing and treating the communication deficits that are at the core of autism.
Two treatment methods that are documented to be effective are naturalistic developmental behavioral interventions (NDBIs) and parent-mediated intervention. Use resources from The Interaction Coach to learn and use these methods.