Hyman, S. L., Levy, S. E., & Myers, S. M. (2019). Identification, evaluation, and management of children with autism spectrum disorder. Pediatrics, 145(1), doi:10.1542/peds.2019-3447
Eilis O’Connell, MA, BCBA, Chante Stoeckley, MEd, BCBA, LBA, and David Celiberti, PhD, BCBA-D
Association for Science in Autism Treatment
ASAT published the first part of this review in the September 2020 issue of Science in Autism Treatment. Here we will provide a synopsis of the remaining sections of American Academy of Pediatrics (2019), “Identification, Evaluation, and Management of Children with Autism Spectrum Disorders.” This will include Section 5 (Interventions), Section 6 (Working with Families), and Section 7 (Research and Service Needs). In our prior issue we covered Section 1 (Prevalence), Section 2 (Clinical Symptoms), Section 3 (Screening and Diagnosis), and Section 4 (Etiological Evaluation). Keeping in view the critical role of pediatricians in the lives of families of children with autism, ASAT has dedicated an entire section of our website for medical professionals which can be accessed here.
Section 5: Interventions
The authors highlight the goals of an intervention, which include minimizing the core deficits of a diagnosis, eliminating and/or decreasing problem behavior, and increasing behaviors of independence, learning and adaptive skills. ASAT supports the authors’ recommendations that a child’s treatment plan is individualized to their developmental needs and monitored through data collection. The significance of all interventions being based on objective scientific evidence to ensure their effectiveness is imperative. ASAT provides further information in “Making Sense of Autism Treatments: Weighing the Evidence.” The authors also discuss numerous laws that require the use of evidence-based practices for individuals with disabilities during their school-age years (5-21 years old), including the Education Improvement Act of 2004 (IDEA) and the No Child Left Behind Act of 2001 (Every Student Succeeds Act of 2015).
Interventions may be provided through the child’s school, agencies, or early intervention services, and some services may be funded through insurance. The authors discuss the need for families to be involved in the selection of interventions and remaining an involved participant across all intervention decisions. IDEA entitles students with ASD to a free and appropriate educational program, but it may not include all the components of a “best practice” model. Advocacy and education may be necessary for a family to access desired services through their school or to pay through insurance. ASAT understands this may be a daunting task at first and encourages readers to review “Advocating for your Child” to learn more about the process.
Numerous models of intervention are discussed, including developmental relationship-focused interventions, Treatment and Education of Autistic and Communication and Handicapped Children (TEACCH), the Early Start Denver Model (ESDM), Applied Behavior Analysis (ABA), social skills interventions, and combined approaches to treatment. The authors point out the important fact that many common interventions being utilized for individuals with ASD do not have a solid evidence base, which may also be linked to a regional discrepancy in the availability of evidence-based services. ASAT encourages readers to review “Learn More About Specific Treatments”, as many of the article’s listed treatment options are still in need of greater research. We also take a closer look at over dozen specific treatment in our “Is There Science Behind That?” as well as in our library of research synopses.
We find it is important to note that, to date, interventions based upon ABA are the evidence-based model that enjoys the most scientific support. ABA is the process of systematically applying interventions to improve socially significant behavior to a meaningful degree and the ability to demonstrate that the interventions utilized were the agent of behavioral change. Principles of ABA are employed by a Board-Certified Behavior Analyst (BCBA) to target skills including the development of new skills and/or decreasing behaviors that can interfere with a child’s progress. ABA can also be prescribed or recommended by a family physician or licensed psychologist. ABA can be utilized to address more serious problem behaviors, such as aggressive or self-injurious behaviors, and families can request that their child’s challenging behavior be evaluated by a behavior analyst through a functional behavior assessment (FBA).
The authors discuss other therapeutic interventions, including speech and language therapy and motor therapies. Speech-Language therapy is recommended to children with ASD because communication symptoms are a part of the DSM-5 criteria; and for children that receive an ASD diagnosis later, delayed communication is a primary concern. Speech-Language therapy is the most commonly used intervention to target language skills for children with ASD. The authors suggest Augmentative and Alternative Communication (AAC) as an intervention for individuals without vocal speech that can include Sign language, the Picture Exchange Communication System (PECS), and speech-generating devices. ASAT would like to highlight that “Augmentative Communication” still requires further research to become an evidence-based model. ASAT agrees with the authors’ important statement that various interventions claim to foster communication for individuals with ASD but lack scientific evidence, including Facilitated Communication (FC). Readers can review ASAT’s, “Is there Science Behind That? Facilitated Communication, to gain further knowledge on the empirical evidence that has discredited FC. The authors address sensory therapies utilized with individuals with ASD with many interventions focusing on the DSM-5 criteria of sensory symptoms. Commonly used sensory interventions including brushing, or proprioceptive stimulation like weighted vests or kinesthetic stimulation, are yet to be supported by scientific evidence. ASAT suggests interacting with these interventions with caution due to their inconsistent research and is supported in the article “Putting a Dead Horse in a Weighted Vest: Another Review of Sensory Integration Training”.
The authors also share information for managing co-occurring medical and other conditions with ASD, including seizures, GI symptoms, feeding disorders, obesity, Pica, sleep problems, wandering, and motor disorders. It is suggested that medical professionals specializing in specific conditions work with families for assessments and counseling on appropriate therapeutic and/or medical interventions.
ASAT supports the article’s suggestions for co-occurring medical conditions as follows:
- Ensuring that each condition is under the care of both doctors and behavior intervention specialists, if appropriate.
- Ruling out a medical factor for certain conditions, such as feeding issues, PICA, and sleep disturbances, before implementing behaviorally based interventions.
- Seeking out the support of a behavior intervention specialist if co-occurring conditions have a behavior-based function.
ASAT provides resources for co-occurring conditions including the “Big Red Safety Tool Kit” for elopement interventions, “Improving Food selectivity for Children with ASD”, and strategies for “Regulating Sleep”.
Behavioral health conditions can also co-occur with an autism diagnosis, including Attention Deficit Hyperactivity Disorder (ADHD), anxiety, Obsessive Compulsive Disorder (OCD), and mood disorders. The authors report that psychiatric conditions are identified in 70% to 90% of children and youth with ASD. If appropriate, children should be evaluated by a medical practitioner and/or psychologist for the classification of a co-occurring disorder. Educational modifications and behavioral strategies can be utilized to support such a diagnosis. The authors discuss that disruptive behaviors (aggression, self-injury, tantrums) can occur in children with ASD as a response to their environment, a reaction to a medical condition, as a means of communication, and/or as a symptom of a co-occurring mental health disorder. At ASAT we support the use of a functional behavioral assessment and implementation of behavioral strategies derived from that analysis as an important intervention step for disruptive behaviors. We also believe that the potential risks and benefits should be carefully weighed before prescribing medication for behavior and, if necessary, medications should be part of a comprehensive treatment approach.
The article reviews nonmedical therapies and nutritional interventions for children with ASD. The authors discuss how many unanswered questions remain about why ASD occurs, along with conventional therapies not being able to rapidly address concerns related to ASD, leading families to turn to “alternative therapies” that do not have a scientific, evidence base. Many therapies can seem attractive due to claiming biological causes of behavioral symptoms and overly optimistic claims to outcomes. To date, the following studies have not demonstrated effective treatment for children with ASD: diets, vitamin and supplement treatment, mind and body practices (music therapy, yoga, massage, equine-assisted therapy), and medical interventions (antifungal agents, immunotherapy, hyperbaric oxygen treatment). ASAT reviews a many of the previously mentioned therapies along with others here: “Learn More About Specific Treatments: Biomedical Interventions“. ASAT supports the authors’ guidance that parents should work with their medical providers and therapeutic teams to ensure that safe and effective interventions are utilized.
Section 6: Working with Families
Section 6 describes how ASD impacts the family as a whole and services that can be provided to support each individual. It is reported that parents of children with autism experience more stress and have increased costs compared to parents that do not have a child with autism. ASAT supports the following beneficial recommendations:
- It is important for parents to gain peer support and their family doctor can provide them with referrals and contact information to support groups in their communities.
- Stressors associated with or resulting from ASD should be discussed between the physician and family, and family members should be given appropriate referrals, supportive counseling, and information on respite care.
- The effects of ASD on siblings should also be monitored by the family pediatrician. Families can proactively teach siblings and provide peer support through community groups. Please see one of our recent articles on this important topic.
- Decision-making should be shared across clinicians, family, and physicians to ensure a collaborative process.
Partnerships between families and physicians can lead to clarity of questions about treatment, ensuring evidence-based best practices are utilized, and that the families’ beliefs, values, and priorities are understood and respected.
The authors highlight the transition to adulthood for individuals with ASD and how families can support their child through this important stage of life. Planning should begin in early adolescence with the child’s service team around the ages of 12 to 14 years old and involve the child with ASD, so they are able to understand and participate with support necessary for their developmental ability. ASAT providers further information on “Developing Goals for the Future”, which can support the service team. Depending on the student’s cognitive ability, the family should consult their school district and service providers for further information on proper documentation needed for college, how to gain guardianship and Supplemental Security Income (SSI). There are currently no legal mandates for adult services, but families can contact their family clinician to gain more information on service coordination, respite care, and other supports of financial and/or behavioral nature. ASAT provides readers with a comprehensive list of resources regarding the adulthood process at “Lifespan Resources from the Web” which can be found on our dedicated Lifespan page.
Section 7: Research and Service Needs
With respect to research funding, the authors noted a shift from genetics and neurobiology to include other important areas such as early detection, environmental risk factors, treatment, implementation science, lifespan services and supports, and epidemiology. This broadened scope will support a more comprehensive understanding of autism and its treatment. Furthermore, the National Institutes of Health Interagency Autism Coordinating Committee advocated for simultaneous lines of research to inform evidence-based clinical care.
This comprehensive report ends with a series of recommendations to pediatric providers predicated on adequate funding and human resources. ASAT is in full support of these recommendations:
- Early identification and treatment which includes timely diagnosis and access to evidence-based interventions. It is further recommended that disparities in access be identified and eliminated.
- Collaboration of systems of care was deemed essential and should be guided by evidence-based services.
- The second recommendation is a very appropriate segue to a call for comprehensive and multi-system planning both for adolescence and adulthood, as well as system of care (medically, vocationally, and residentially).
- Aside from preparing families for transitions, there is a call to action for pediatricians to embrace their important role in informing family members about underlying evidence for various interventions, opportunities to participate in research, community resources and support.
- In addition, pediatric providers must remain informed themselves to remain competent and aware when serving individuals with ASD and their families.
We hope that pediatricians and families alike will find this review article helpful. Finally, and a possible benefit for those who enjoy reading the research articles, readers will find well over 600 cited research articles to support the findings of this report, most of which were published in the last ten years.
Citation for this article:
O’Connell, E., Stoeckley, C., & Celiberti, D. (2020). Part 2 of a 2 part review of Identification, evaluation, and management of children with autism spectrum disorder. Science in Autism Treatment, 17(10).
