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This article reviews the leading-edge research showing that effective early intervention (EI) services have the capability to alter brain function and social communication development. Children randomized to the treatment group received on average 15. H / wk of ESDM intervention. Children in the control group received only 9. H/wk of individual community programming.
This article reviews the leading-edge research showing that effective early intervention (EI) services have the capability to alter brain function and social communication development. Children randomized to the treatment group received on average 15. H / wk of ESDM intervention. Children in the control group received only 9. H/wk of individual community programming.
This article reviews the leading-edge research showing that effective early intervention (EI) services have the capability to alter brain function and social communication development. Children randomized to the treatment group received on average 15. H / wk of ESDM intervention. Children in the control group received only 9. H/wk of individual community programming.
The Author(s) 2014 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/0009922814521284 cpj.sagepub.com Article Introduction New research shows that toddlers who completed com- prehensive developmental behavioral intervention, known as the Early Start Denver Model (ESDM), 1
showed significant improvements in IQ, language, adaptive behavior, and autism diagnosis. Moreover, when researchers measured childrens brain EEG activity, those young children with ASD who had com- pleted the randomized clinical trial of ESDM relative to controls showed more normalized patterns of brain activity. This is important information for clinical prac- tice and service delivery because it is necessary to make effective EI services available to young children and their families given this developmental window of opportunity. This article reviews the leading-edge research of Dawson and others showing that effective early inter- vention (EI) services have the capability to alter brain function and social communication development in young children at risk for ASD. In addition, this article reviews the American Academy of Pediatrics (AAP) recommendations that 18- and 24-month children be screened for ASD to foster early identification of the disorder. Third, it discusses limitations in current state EI (Part C) services despite these best-practices and research findings. Finally, it discusses the importance of primary care physicians support to families in securing community programming at the intensity viewed neces- sary for optimal child outcome. EI Alters the Trajectory of Brain Development In 1 randomized controlled study, the ESDM interven- tion 1 was trialed in young children with ASD between the ages of 18 and 30 months. ESDM was based on developmental and applied behavioral analytic princi- ples and was delivered by trained therapists and parents over 2 years. Children randomized to the treatment group received on average 15.2 h/wk of ESDM inter- vention in addition to 5.2 h/wk of guided care from par- ents. The children randomized to the control group received on average 9.1 h/wk of individual community- based therapies and 9.3 h/wk of group interventions (such as developmental preschool) across the 2-year span. Relative to children in the community group, chil- dren in the ESDM group at 1 year displayed signifi- cantly improved cognitive ability, but no group differences were uncovered in adaptive behavior. Follow-up at 2 years indicated that the ESDM group continued to show significantly improved cognitive ability, most notably in the areas of receptive and 521284CPJXXX10.1177/0009922814521284Clinical PediatricsBraddock and Twyman research-article2014 1 Saint Louis University School of Medicine, MO, USA Corresponding Author: Barbara Braddock, Saint Louis University School of Medicine, Knights of Columbus Developmental Center, SSM Cardinal Glennon Childrens Medical Center, 1465 South Grand Blvd, St Louis, MO 63104, USA. Email: bbraddoc@slu.edu Access to Treatment for Toddlers With Autism Spectrum Disorders Barbara Braddock, PhD 1 and Kimberly Twyman, MD 1 Abstract New research shows that intensive and early intervention (EI) has the potential to change brain function in young children with Autism Spectrum Disorders (ASD). Despite the positive benefit of EI, many families (n = 16) reported difficulties accessing EI services following an ASD diagnosis at the intensity viewed necessary for optimal child outcome. Parents reported that on average they secured 6.81 hours of services per month and that limited access to EI services led to increased parental stress at a time when a new ASD diagnosis was often overwhelming. Findings are discussed in terms of support to families who are experiencing difficulties accessing care after new ASD diagnosis. Keywords autism spectrum disorders, early intervention 226 Clinical Pediatrics53(3) expressive language abilities. In addition, the ESDM and community groups differed in adaptive behaviors, with the ESDM group demonstrating developing skills in comparison to declining skills within the community group. Overall, the study shows that 2 years of intensive and developmentally appropriate intervention at around 15 h/wk resulted in significant improvements in lan- guage and adaptive behaviors in young children with ASD. To understand how EI alters the trajectory of brain development in children with ASD, Dawson et al 2
designed a secondary outcome study by measuring EEG activity. Given that past research had documented atypi- cal EEG activity in young children with ASD in response to facial stimuli, 3,4 EEG activity was recorded in ESDM participants while they viewed social (faces) and nonso- cial (toys) stimuli. Results indicated that relative to chil- dren in the community group, children in the ESDM group did not differ significantly on measures of early- stage perceptual face processing but showed significant differences in EEG measurements of attention engage- ment and active cognitive processing of social stimuli. Moreover, children who had received the ESDM inter- vention showed cortical activity similar to typically developing children in response to the social (faces) stimuli. Children who had received community inter- vention showed an opposite pattern of results, as seen by increased cortical activation in response to the nonsocial (toys) stimuli. Functionally, greater cortical activity while viewing faces was correlated with improved social behavior in the ESDM group. These data show that EI has the potential to change childrens experience with people in ways that are relevant for social communica- tive development and underlying brain function. In everyday practice, these data clearly indicate that devel- opmentally appropriate, intensive, and early treatment is necessary to alleviate autism symptomatology in young children with ASD. Early Identification To aid in early identification of ASD, the AAP, in a 2006 policy statement, recommended administering a stan- dardized autism-specific screening tool to all children at the 18-month preventive care visit. 5 This recommenda- tion was later expanded to screen at 24 and 30 months to identify those children who may regress in social com- munication skills after 18 months of age. Active public awareness campaigns by the Centers for Disease Control and Prevention and other public organizations were implemented to promote timely referral to specialized assessments and EI services. 6 As research develops, experts are defining early markers to more reliably diagnose ASD in children <18 months of age by exam- ining repetitive actions and communication deficits. 7 Given these activities, more and more toddlers are referred for comprehensive ASD evaluations given developmental concerns and/or failed autism-specific screenings. Studies consistently show that early identifi- cation and access to intensive EI services have posi- tively influenced developmental trajectories in young children with ASD. 1,2,8 However, advancing public pol- icy and resultant service delivery models may be insuf- ficient if families experiencing a new diagnosis of ASD report decreased access to developmentally appropriate, intensive EI services. Furthermore, a recent study docu- mented that part C EI eligibility requirements vary greatly from state to state, and current rates of enroll- ment are less than expected to serve all children who have moderate or severe developmental delays. 9 Access to Treatment Families with infants or toddlers <3 years old, experi- encing a new diagnosis of ASD may be eligible for part C EI services (ie, 0-3 services) depending on a particular states eligibility requirements. Through part C EI ser- vice providers, young children with a diagnosis of ASD often receive speech and language therapy, occupational therapy, physical therapy, and early childhood education services. 10 Families may secure community-based thera- pies; to include psychology and counseling services; or other services through providers based on individual health insurance plans and payers. Families may also enroll their children in community-based preschool set- tings in which children are exposed to developmentally appropriate activities and experiences. Even so, access to behavioral treatment can be lim- ited if families reside in underserved areas, including both urban and rural locales. Individuals from diverse underserved communities may experience additional barriers that limit access to treatment, such as financial stressors, transportation needs, inflexible work sched- ules, and/or limited family support, among others. Research has shown that families who are poor and reside in a state with narrow eligibility requirements are less likely to access part C EI services. 11 If treatment is not secured at a young age, early core deficits may lead to a cascading effect on childrens neurodevelopment, which arises from impoverished social interactions with others. 12 To examine EI service delivery, parents with toddlers experiencing a new ASD diagnosis were questioned in a Midwestern urban hospital. Only parents with children <3 years of age who enrolled in an ASD parent educa- tion program offered through Developmental and Braddock and Twyman 227 Behavioral Pediatrics outpatient services were eligible for participation. Questions were asked in regard to type, intensity, provider setting, and general satisfaction with regard to EI services. Just prior to enrollment in an 8-week parent educa- tion, 16 parents of young children between the ages of 21 and 34 months (mean age of 26.64 months) were queried by therapists. All children had a medical (Diagnostic and Statistical Manual of Mental Disorders, fourth edition, text revision) 13 diagnosis of ASD of at least 1 month or more prior to questioning. All parents (100%) reported that EI services fell short of what they believed was necessary for optimal child outcomes. On average, parents reported that young children received 6.8 visits (or estimated hours) of EI services per month. Reports of services ranged from 0 to 13 visits (or estimated hours) per month. All parents reported that EI services were provided in the family home or day care setting. Of 16 participants, 3 were enrolled in day care; 3 of 16 participants reported that occupational and speech-language therapies were delivered as cotreatments rather than individual treat- ments in the home environment. Also, 2 parents reported that they secured community-based services in addition to part C EI services. (See Table 1 to review programmatic data). It is not entirely clear why 3 families had not accessed part C EI services within a month or more after ASD diagnoses. It may be that families experiencing a new diagnosis may be confused about eligibility require- ments. Families may also experience long wait lists and/ or reduced access to trained professionals to implement community-based treatment. Furthermore, trained pro- fessionals must be available to provide treatment in natural environments at a recommended frequency for maximum benefit. Treatment Dosage Intensity of EI services is paramount because more time spent with children with ASD in active, positive engage- ment relates to better outcomes in the later preschool years. 14 Based on the available research, brain and behavioral changes were documented following about 15 h/wk of direct therapy over 2 years. 1 One recent study showed that a greater number of intervention hours were positively related to the degree of improvement in young children with ASD. 15 Therefore, it cannot be presumed that intensive service delivery equates to our communi- tys current EI practices of about 7 h/month when rec- ommending services for young children with ASD. Our data suggest that programs serving 0- to 3-year-old Table 1. Frequency and Estimated Hours Per Month of 0 to 3 State-Supported EI Services and Other Community EI Services Secured, as Reported by Parents Experiencing a New Diagnosis of ASD in Children <3 Years of Age. a Participant ST 0-3 State-Supported EI Services ABA Day Care Other Community Services OT PT OT/ST ST OT Feeding Team 1 2/Month 4/Month 2 4/Month 8/Month 3 4/Month 4 4/Month 2/Month 5 12/Month 6 b
15 4/Month 4/Month 4/Month 1/Month 16 4/Month Enrolled Abbreviations: EI, early intervention; ASD, autism spectrum disorders; OT, occupational therapy; PT, physical therapy; ST, speech and language therapy; OT/ST, combined occupational and speech therapy in 1 visit. a Mean total visits per month = 6.81 (or 6.81 estimated hours per month). Diagnostic and Statistical Manual of Mental Disorders 13 ASD diagnoses were provided by medical practitioners at least 1 month before completion of parent questioning. b No secured EI services. 228 Clinical Pediatrics53(3) children fell short in this Midwestern urban community in comparison to the ideal documented in new research targeting young children with ASD. Role of the Primary Care Physician Primary care physicians may be the first to meet parents to discuss difficulties encountered after an ASD diagno- sis has been made by an outside diagnostic center. Creative solutions are often needed to access EI service for toddlers with an ASD diagnosis. Primary care physi- cians may find themselves engaged in problem solving with families around topics such as treatment dosage, self-advocacy needs, optimal home programming, and access to additional community resources and supports. Based on the reviewed research, primary care physi- cians can advise families that both younger age and more intervention hours positively affect developmental outcomes in young children with ASD. To best inform families, primary care physicians must also understand the reported limitations of part C EI state services for infants and toddlers in their particular locale as outlined by Rosenberg and others. 9 With this information in hand, primary care physicians may work with families to determine if treatment dosage is optimal for the fami- lies they serve. These physicians may also query fami- lies to estimate if therapists are consistently available and trained in autism-specific treatment strategies. In some cases, families may be linked to community agen- cies offering advocacy supports to families in attempts to secure additional and/or appropriate services for their children. Furthermore, primary care physicians must empha- size the importance of providing countless learning opportunities for children with ASD in the home envi- ronment. For example, development theory suggests that children are active in the learning process and learn best through collaborations with others in a language- rich environment. 16,17 Information about developmental theory may equate to parents understanding how to talk and play in developmentally appropriate ways with their children in the home environment. Parents must be encouraged to obtain recommendations from their childs EI specialists for continued learning opportuni- ties in the home environment. Primary care physicians must encourage families to think outside the box in terms of service delivery options in their own homes and communities. Given the funding constraints in both health and educational arenas, families may need to focus on doing more with less. If available to families, university programs may offer therapeutic services and innovative pro- gramming at reduced rates. Families may train other family members or close friends in methods by which to structure increased learning opportunities for their children. Families may also supplement part C EI ser- vices with community-based intervention through local hospitals, rehabilitation centers, local agencies, and/or private practices. As reported, families experiencing a new ASD diag- nosis may feel overwhelmed when accessing services for toddlers with a new diagnosis of ASD. Parents may need encouragement to locate parent support groups and respite services in their local communities. For up-to- date factual information, new clinician and family edu- cational materials have been released by the AAP. 18-20
Parents may also require support to navigate systems designed to qualify persons for needed service pro- grams. As stakeholders continue to work to improve systems of care for toddlers with ASD, pediatricians must consider creative ways by which to provide inten- sive and appropriate ASD interventions to young chil- dren in local communities and natural environments. More research into best practices and treatment dosage is needed in this young ASD population. Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. Funding The author(s) disclosed receipt of the following financial sup- port for the research, authorship, and/or publication of this article: This work was partially supported by John Allan Love Charitable Foundation and CVS Caremark Community Grant. References 1. Dawson G, Rogers S, Munson J, et al. Randomized, con- trolled trial of an intervention for toddlers with autism: The Early Start Denver Model. Pediatrics. 2010;125: e17-e23. 2. Dawson G, Jones EJH, Merkle K, et al. Early behavioral intervention is associated with normalized brain activity in young children with Autism. J Am Acad Child Adolesc Psychiatry. 2012;51:1150-1159. 3. Dawson G, Carver L, Meltzoff AN, Panagiotides H, McPartland J, Webb SJ. Neural correlates of face and object recognition in young children with autism spec- trum disorder. Child Dev. 2002;73:700-717. 4. Webb SJ, Dawson G, Bernier R, Panagiotides H. ERP evi- dence of atypical face processing in young children with autism. J Autism Dev Disord. 2006;36:881-890. 5. American Academy of Pediatrics, Council on Children with Disabilities; Section on Developmental Behavioral Pediatrics; Bright Futures Steering Committee; Medical Home Initiatives for Children with Special Needs Project Braddock and Twyman 229 Advisory Committee. Identifying infants and young chil- dren with developmental disorders in the medical home: an algorithm for developmental surveillance and screen- ing. Pediatrics. 2006;118:405-420. 6. Zwaigenbaum L, Bryson S, Lord C, et al. Clinical assess- ment and management of toddlers with suspected autism spectrum disorder: Insights from studies of high-risk infants. Pediatrics. 2008;123:1383-1391. 7. Iverson JM, Wozniak RH. Variation in vocal-motor development in infant siblings in children with autism. J Autism Dev Disord. 2007;37:158-170. 8. Corsello C. Early intervention in autism. Infant Young Child. 2005;18:74-85. 9. Rosenberg SA, Robinson CC, Shaw EF, Ellison MC, Part C. Early intervention for infants and toddlers: percentage eligible versus served. Pediatrics. 2013;131:38-46. 10. Raspa M, Hebbeler K, Bailey DB, Scarborough AA. Service provider combinations and the delivery of early intervention services to children and families. Infant Young Child. 2010;23:132-144. 11. McManus B, McCormick MC, Acevedo-Garcia D, Ganz M, Hauser-Cram P. The effect of state early interven- tion eligibility policy on participation among a cohort of young CSHCN. Pediatrics. 2009;124:S368-S374. 12. Mundy P, Burnette C. Joint attention and neurodevel- opment. In: Volkmar F, Klin A, Paul R, eds. Handbook of Autism and Pervasive Developmental Disorders. Hoboken, NJ: John Wiley; 2005. 13. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 4th ed, text revision. Washington, DC: American Psychiatric Association; 2000. 14. Lord C, McGee JP, eds. Committee on Educational Interventions for Children With Autism. Educating Children With Autism. Washington, DC: National Academies Press; 2001. 15. Rogers SJ, Estes A, Lord C, et al. Effects of a brief Early Start Denver Model (ESDM)-based parent intervention on toddlers at risk for autism spectrum disorders: a random- ized controlled trial. J Am Acad Child Adolesc Psychiatry. 2012;51:1052-1065. 16. Tomasello M, Farrar MJ. Joint attention and early lan- guage. Child Dev. 1986;57:1454-1463. 17. Vygotsky LS. Mind in Society: The Development of Higher Psychological Processes. Cambridge, MA: Harvard University Press; 1978. 18. American Academy of Pediatrics, AAP Council on Children with Disabilities Autism Subcommittee. Understanding Autism Spectrum Disorders. Elk Grove Village, IL: American Academy of Pediatrics; 2012. 19. American Academy of Pediatrics. Autism: Caring for Children With Autism Spectrum Disorders. A Resource Toolkit for Clinicians. 2nd ed. Elk Grove Village, IL: American Academy of Pediatrics; 2012. 20. American Academy of Pediatrics. Autism Spectrum Disorders: What Every Parent Needs to Know. Elk Grove Village, IL: American Academy of Pediatrics; 2012.