La revue Pediatrics consacre un numéro spécial à l’autisme, en particulier sur la transition vers l’âge adulte.

Transitions in the Life Course of Autism and Other Developmental Disabilities

1. Kuo AA, Anderson KA, Crapnell T, Lau L, Shattuck PT. Introduction to Transitions in the Life Course of Autism and Other Developmental Disabilities. Pediatrics. 2018 ; 141(Suppl 4) : S267-s71.

The Health Care Transitions Research Network for Autism Spectrum Disorder and other Developmental Disabilities and the Life Course Research Network, both funded by the Maternal and Child Health Bureau, invited articles for this Supplement. Our goal in this Supplement is to highlight and explore developmental and transition-related challenges over the life course of individuals on the autism spectrum and other neurodevelopmental disabilities, discuss the clinical and practice implications of these issues, highlight gaps in knowledge, and identify directions for future research.

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2. Lappe M, Lau L, Dudovitz RN, Nelson BB, Karp EA, Kuo AA. The Diagnostic Odyssey of Autism Spectrum Disorder. Pediatrics. 2018 ; 141(Suppl 4) : S272-s9.

OBJECTIVES : Autism spectrum disorder (ASD) is a neurodevelopmental disorder characterized by challenges in social communication and interaction and restricted or repetitive behavior, interests, or activities. Although ASD symptoms generally manifest in early childhood, many individuals experience delays accessing an autism diagnosis and related services. In this study, we identify the individual, social, and structural factors that influence parents’ experiences of children’s ASD diagnosis. METHODS : Parents of 25 children with autism participated in 60- to 90-minute semistructured in-person interviews. Interviews were recorded and transcribed verbatim. Transcripts were analyzed using the method of grounded theory. This inductive method allowed analysts to identify key themes related to participants’ experiences of children’s ASD diagnosis. RESULTS : The process of ASD diagnosis reflects an odyssey that includes 3 key phases : the prediagnosis phase, in which « Making Sense of Child Difference » is a primary characteristic of participants’ experiences ; the during-diagnosis phase, when « Navigating Diagnosis » suggests systematic barriers that influence the timing of ASD diagnosis ; and the postdiagnosis phase, when participants’ experiences of « Connecting to Services » point to the important role that personal efforts play in gaining access to care. CONCLUSIONS : In this study, we highlight individual, social, and structural factors that influence parent experiences before, during, and after their child’s autism diagnosis. Our findings indicate the need for more consistent and continuous support for autistic individuals and their families during the diagnostic odyssey, as well as resources that better represent the diversity of experiences and symptoms associated with autism across the life course.

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3. Karp EA, Dudovitz R, Nelson BB, Shih W, Gulsrud A, Orlich F, Colombi C, Kuo AA. Family Characteristics and Children’s Receipt of Autism Services in Low-Resourced Families. Pediatrics. 2018 ; 141(Suppl 4) : S280-s6.

OBJECTIVES : Parents of children with autism spectrum disorder (ASD) face competing demands when caring for their child and fulfilling family commitments. It remains unknown whether family obligations and parental stress might decrease the use of intervention services for young children with ASD. METHODS : The current study is a secondary analysis of baseline date from a published randomized control trial with 147 low-resourced caregiver-child dyads. Demographic information, data on service use, maternal employment, parent’s perception of their child’s development, and parental stress were collected for primary caregivers of 2- to 5-year-old children with ASD from 5 sites. Multiple logistic regressions of accessing any intervention services or more than 1 services on familial characteristics were performed, controlling for demographic and contextual variables. RESULTS : Twenty-five percent of children were receiving no intervention service ; 26% were receiving 1 service ; and 49% were receiving 2 or more services. Perceived developmental delay and not having a sibling in the home were associated with higher odds of receiving intervention services. Children were more likely to receive more than 1 service if their parents had at least a college education and low levels of stress. CONCLUSIONS : Factors including perceived developmental level, parental stress, and caring for siblings may play a role in accessing services for children with ASD. Results reveal that competing family needs may be barriers to service use. Mothers of children with ASD with multiple children in the home, low levels of education, and high levels of stress may need additional supports or alternative service delivery models.

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4. McGhee Hassrick E, Shattuck P, Carley K. Network Measures of Collaborative Support for Young Adults With Autism. Pediatrics. 2018 ; 141(Suppl 4) : S287-s92.

OBJECTIVES : The treatment of autism requires complex, multimodal interventions, provided by parents and providers across settings. As young adults with autism spectrum disorder (ASD) transition into adulthood, new stakeholders are added to support planning for postsecondary employment. In this article, we investigate the use of dynamic social network measures that describe the resources of young adults throughout transition. METHODS : A longitudinal, dynamic social network survey (Social Dynamics of Intervention [SoDI]) was conceptualized, designed, and conducted as a feasibility test, measuring changes in collaboration among parents and school staff members who provided interventions for children with ASD in 2 urban public schools. Using the SoDI, we tracked the following over time : the team who provided interventions, their locations, the interventions they provided, the autism trainings they attended, and the density of the team’s problem-solving network for the child. RESULTS : Using the SoDI, we successfully identified stakeholders across settings who provided interventions for each child. Results indicated variation in the density of problem-solving and trust related to ASD intervention across teams as well as variation in intervention and autism knowledge networks during the school year. Adaptations of the SoDI for mapping pre- and posttransition resources and social connectivity across stakeholders for young adults with ASD are proposed in the Discussion section. CONCLUSIONS : Dynamic social network approaches can be used to capture changes in intervention, autism knowledge, and social connectivity, providing informative descriptive data about how vocational rehabilitation policies might increase employment supports during the transition process for young adults with ASD.

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5. Kuo AA, Crapnell T, Lau L, Anderson KA, Shattuck P. Stakeholder Perspectives on Research and Practice in Autism and Transition. Pediatrics. 2018 ; 141(Suppl 4) : S293-s9.

OBJECTIVES : Individuals with autism spectrum disorder (ASD) are reported to experience significant challenges during the transition to adulthood. Although recent evidence indicates that individuals with ASD experience poor outcomes in adulthood, little is understood about the contributing factors. In this qualitative study, we investigated the barriers to and needs in research and practice in the transition to adulthood among individuals with ASD. METHODS : Thirteen researchers, including service providers, family members, and an individual with ASD participated in 30- to 60-minute, semistructured, open-ended telephone interviews. Interviews were transcribed, and data were analyzed by using an inductive approach to identify themes related to barriers to and needs in the transition to adulthood for youth with ASD. RESULTS : Stakeholders identified the need for transition planning and preparation to begin earlier and for systems to better accommodate the interests and varying abilities of individuals with ASD. Stakeholders also felt that parent and service provider expectations and perceptions influence early opportunities and experiences offered throughout the transition process. CONCLUSIONS : This study reveals the multilevel barriers to and needs in the transition to adulthood and the need for interagency and multidisciplinary collaboration and research to address the varying levels of needs, abilities, and multisector challenges.

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6. Anderson C, Lupfer A, Shattuck PT. Barriers to Receipt of Services for Young Adults With Autism. Pediatrics. 2018 ; 141(Suppl 4) : S300-s5.

OBJECTIVES : In this study, we examine experiences of families of young adults (YAs) on the autism spectrum to better understand dynamics leading to poor YA outcomes. METHODS : Twenty parents of YAs with autism spectrum disorder (ASD) who had completed high school in the past 15 years took part in a 90-minute interview. They described their YA’s experiences at the transition from high school and current status with regards to services or postsecondary education. Qualitative interviews were digitally recorded, transcribed, and analyzed by using the constant comparative method associated with a grounded theory approach. RESULTS : Few adults with ASD were receiving autism-specific assistance no matter their level of cognitive functioning. Existing systems, such as service agencies and college disability support offices, had seldom been designed to meet their needs. Some families gave up on services, some used self-directed services they had to manage themselves, and others paid out of pocket for services they could access no other way. Inadequate services often led to YA failure and worsening of symptoms. The majority of families bore the financial and emotional brunt of finding or creating services and community experiences to meet their adult child’s needs. CONCLUSIONS : Parent narratives highlight the difficulties that are faced as families attempt to access appropriate services for YAs on the autism spectrum at all levels of functioning. These insights can help pediatricians understand family concerns and develop anticipatory guidance strategies. More research is needed to identify potential solutions to challenges faced by specific subgroups of YAs with ASD.

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7. Anderson KA, Roux AM, Kuo A, Shattuck PT. Social-Ecological Correlates in Adult Autism Outcome Studies : A Scoping Review. Pediatrics. 2018 ; 141(Suppl 4) : S306-s17.

The transition into adulthood is a critical period in the life course that shapes later outcomes. Many adults on the autism spectrum fare poorly across a wide range of quality of life indicators. Understanding the multilevel factors that influence transition outcomes is necessary to develop strategies that promote better outcomes. In this scoping review, we characterize the use of social-ecological factors in adult autism outcome studies, identify understudied areas of research, and provide recommendations for future research. We conducted a literature search for studies in which the relationship between social-ecological factors and transition outcomes among transition-age youth with autism was assessed. We organized variables used in studies across 5 levels of influence : family-, interpersonal-, institutional-, community-, and policy-level factors. Our findings reveal that both breadth and depth of social-ecological factors usage in autism outcomes studies is limited because of the narrow inclusion of variables across social-ecological levels, the overreliance on a limited number of national data sets, and the overall lack of variation in research design. We propose 9 recommendations to inform the development of multilevel studies.

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8. Anderson KA, Sosnowy C, Kuo AA, Shattuck PT. Transition of Individuals With Autism to Adulthood : A Review of Qualitative Studies. Pediatrics. 2018 ; 141(Suppl 4) : S318-s27.

Many young adults with autism spectrum disorder experience poor transition outcomes in key areas, including postsecondary employment, higher education, health care, social connectedness, and independent living, yet we lack a clear understanding of the specific factors that impact these outcomes. We reviewed qualitative research in which the perspectives of youth and young adults with autism spectrum disorder, parents, services providers, and other stakeholders were gathered to identify barriers and facilitators to optimal outcomes. Findings revealed that poor transition outcomes are influenced by several factors, including poor person-environment fit, uncertainty about the roles of parents, and the lack of comprehensive or integrated services. These findings also revealed the aspects of familial, organizational, and policy contexts that may be targeted for interventions. Finally, stakeholders emphasized that supports should be individualized and focused on the changing aspects of the young adult’s social and physical environment rather than behavior change. We discuss implications for policy and practice and provide recommendations for further research.

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9. Rast JE, Shattuck PT, Roux AM, Anderson KA, Kuo A. The Medical Home and Health Care Transition for Youth With Autism. Pediatrics. 2018 ; 141(Suppl 4) : S328-s34.

BACKGROUND : Our objective in this study was to describe the association between the receipt of health care transition services (HCTS) and having a medical home in youth with autism spectrum disorder (ASD). Youth with ASD receive HCTS less often than other youth with special health care needs but are in particular need of continuous, comprehensive health care. METHODS : We used the National Survey of Children with Special Health Care Needs to describe the receipt of HCTS in youth with ASD and its association with presence of a medical home. Descriptive statistics are presented, and logistic regression is used to assess the association between medical home and HCTS. RESULTS : Twenty-one percent of youth with ASD met the criteria for receiving HCTS. Youth with ASD and a medical home were almost 3 times as likely to receive HCTS as youth without a medical home, and youth who received family-centered care and have adequate care coordination within the medical home were more than twice as likely to receive HCTS as those who did not. CONCLUSIONS : Youth with ASD are not receiving HCTS at the same rate as their peers. Increasing provider awareness of autism, the components of a medical home, and of the importance of HCTS could greatly help increase the percentage of youth who receive effective HCTS.

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10. Davignon MN, Qian Y, Massolo M, Croen LA. Psychiatric and Medical Conditions in Transition-Aged Individuals With ASD. Pediatrics. 2018 ; 141(Suppl 4) : S335-s45.

BACKGROUND AND OBJECTIVES : Children with autism spectrum disorder (ASD) have a variety of medical and psychiatric conditions and an increased use of health care services. There is limited information about the prevalence of psychiatric and medical conditions in adolescents and young adults with ASD. Our objective was to describe the frequency of medical and psychiatric conditions in a large population of diverse, insured transition-aged individuals with ASD. METHODS : Participants included Kaiser Permanente Northern California members who were enrolled from 2013 to 2015 and who were 14 to 25 years old. Individuals with ASD (n = 4123) were compared with peers with attention-deficit/hyperactivity disorder (n = 20 615), diabetes mellitus (n = 2156), and typical controls with neither condition (n = 20 615). RESULTS : Over one-third (34%) of individuals with ASD had a co-occurring psychiatric condition ; the most commonly reported medical conditions included infections (42%), obesity (25%), neurologic conditions (18%), allergy and/or immunologic conditions (16%), musculoskeletal conditions (15%), and gastrointestinal (11%) conditions. After controlling for sex, age, race, and duration of Kaiser Permanente Northern California membership, most psychiatric conditions were significantly more common in the ASD group than in each comparison group, and most medical conditions were significantly more common in the ASD group than in the attention-deficit/hyperactivity disorder and typical control groups but were similar to or significantly less common than the diabetes mellitus group. CONCLUSIONS : Although more research is needed to identify factors contributing to this excess burden of disease, there is a pressing need for all clinicians to approach ASD as a chronic health condition requiring regular follow-up and routine screening and treatment of medical and psychiatric issues.

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11. Shattuck PT, Lau L, Anderson KA, Kuo AA. A National Research Agenda for the Transition of Youth With Autism. Pediatrics. 2018 ; 141(Suppl 4) : S355-s61.

In this article, we outline a national research agenda to improve the transition to adulthood among youth with autism. We synthesized the results from 5 interconnected sets of activities : (1) a scoping review of published autism research and research priority statements, (2) a series of key informant interviews with stakeholders, (3) a 2-day National Research Agenda meeting, (4) a modified Delphi survey of stakeholders, and (5) 2 formal reviews of published literature on autism and transition. We identified 2 overarching priorities to advance research about autism and transition : (1) increased focus on community- and systems-level factors that influence outcomes with population-level approaches to measuring outcomes and (2) greater involvement of people with autism in establishing research priorities, designing research studies, and producing study findings and recommendations. We discuss how the life course framework can guide future inquiry that addresses gaps in extant research.

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12. Kapp SK. Social Support, Well-being, and Quality of Life Among Individuals on the Autism Spectrum. Pediatrics. 2018 ; 141(Suppl 4) : S362-s8.

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13. Demer LL. The Autism Spectrum : Human Rights Perspectives. Pediatrics. 2018 ; 141(Suppl 4) : S369-s72.

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14. Paradiz V, Kelso S, Nelson A, Earl A. Essential Self-Advocacy and Transition. Pediatrics. 2018 ; 141(Supplement 4) : S373-S7.

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