1. 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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2. 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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3. 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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4. Argou-Cardozo I, Zeidan-Chulia F. {{Clostridium Bacteria and Autism Spectrum Conditions: A Systematic Review and Hypothetical Contribution of Environmental Glyphosate Levels}}. {Med Sci (Basel)}. 2018; 6(2).
Nowadays, there seems to be a consensus about the multifactorial nature of autism spectrum disorders (ASD). The literature provides hypotheses dealing with numerous environmental factors and genes accounting for the apparently higher prevalence of this condition. Researchers have shown evidence regarding the impact of gut bacteria on neurological outcomes, altering behavior and potentially affecting the onset and/or severity of psychiatric disorders. Pesticides and agrotoxics are also included among this long list of ASD-related environmental stressors. Of note, ingestion of glyphosate (GLY), a broad-spectrum systemic herbicide, can reduce beneficial bacteria in the gastrointestinal tract microbiota without exerting any effects on the Clostridium population, which is highly resistant to this herbicide. In the present study, (i) we performed a systematic review to evaluate the relationship between Clostridium bacteria and the probability of developing and/or aggravating autism among children. For that purpose, electronic searches were performed on Medline/PubMed and Scielo databases for identification of relevant studies published in English up to December 2017. Two independent researches selected the studies and analyzed the data. The results of the present systematic review demonstrate an interrelation between Clostridium bacteria colonization of the intestinal tract and autism. Finally, (ii) we also hypothesize about how environmental GLY levels may deleteriously influence the gut-brain axis by boosting the growth of Clostridium bacteria in autistic toddlers.
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5. Brodski-Guerniero A, Naumer MJ, Moliadze V, Chan J, Althen H, Ferreira-Santos F, Lizier JT, Schlitt S, Kitzerow J, Schutz M, Langer A, Kaiser J, Freitag CM, Wibral M. {{Predictable information in neural signals during resting state is reduced in autism spectrum disorder}}. {Hum Brain Mapp}. 2018.
The neurophysiological underpinnings of the nonsocial symptoms of autism spectrum disorder (ASD) which include sensory and perceptual atypicalities remain poorly understood. Well-known accounts of less dominant top-down influences and more dominant bottom-up processes compete to explain these characteristics. These accounts have been recently embedded in the popular framework of predictive coding theory. To differentiate between competing accounts, we studied altered information dynamics in ASD by quantifying predictable information in neural signals. Predictable information in neural signals measures the amount of stored information that is used for the next time step of a neural process. Thus, predictable information limits the (prior) information which might be available for other brain areas, for example, to build predictions for upcoming sensory information. We studied predictable information in neural signals based on resting-state magnetoencephalography (MEG) recordings of 19 ASD patients and 19 neurotypical controls aged between 14 and 27 years. Using whole-brain beamformer source analysis, we found reduced predictable information in ASD patients across the whole brain, but in particular in posterior regions of the default mode network. In these regions, epoch-by-epoch predictable information was positively correlated with source power in the alpha and beta frequency range as well as autocorrelation decay time. Predictable information in precuneus and cerebellum was negatively associated with nonsocial symptom severity, indicating a relevance of the analysis of predictable information for clinical research in ASD. Our findings are compatible with the assumption that use or precision of prior knowledge is reduced in ASD patients.
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6. Clarke AJ, Abdala Sheikh AP. {{A perspective on « cure » for Rett syndrome}}. {Orphanet journal of rare diseases}. 2018; 13(1): 44.
The reversal of the Rett syndrome disease process in the Mecp2 mouse model of Guy et al. (2007) has motivated families and researchers to work on this condition. The reversibility in adult mice suggests that there is potentially much to be gained from rational treatments applied to patients of any age. However, it may be difficult to strike the right balance between enthusiasm on the one hand and realism on the other. One effect of this has been a fragmentation of the « Rett syndrome community » with some groups giving priority to work aimed at a cure while fewer resources are devoted to medical or therapy-based interventions to enhance the quality of life of affected patients or provide support for their families.Several possible therapeutic approaches are under development that, it is claimed and hoped, may lead to a « cure » for patients with Rett syndrome. While all have a rationale, there are potential obstacles to each being both safe and effective. Furthermore, any strategy that succeeded in restoring normal levels of MECP2 gene expression throughout the brain carries potential pitfalls, so that it will be of crucial importance to introduce any clinical trials of such therapies with great care.Expectations of families for a radical, rational treatment should not be inflated beyond a cautious optimism. This is particularly because affected patients with us now may not be able to reap the full benefits of a « cure ». Thus, interventions aimed at enhancing the quality of life of affected patients should not be forgone and their importance should not be minimised.
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7. 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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8. Demer LL. {{The Autism Spectrum: Human Rights Perspectives}}. {Pediatrics}. 2018; 141(Suppl 4): S369-s72.
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9. Finke EH, Hickerson BD, Kremkow JMD. {{« To Be Quite Honest, If It Wasn’t for Videogames I Wouldn’t Have a Social Life at All »: Motivations of Young Adults With Autism Spectrum Disorder for Playing Videogames as Leisure}}. {American journal of speech-language pathology}. 2018: 1-18.
Purpose: Leisure activities are underutilized as a context for intervention in the field of speech-language pathology despite the fact that leisure can be an important context for skill development. The current study investigated the perceptions of individuals with autism spectrum disorder (ASD) who play videogames as their primary leisure activity regarding the role of videogames in their lives and their motivations for playing videogames. Method: Qualitative interview methodology was used to investigate the experiences of 10 18-24-year-olds with ASD. Information was collected about the role of videogames in the lives of adolescents and young adults with ASD and the perceived benefits of playing videogames. Results: Results indicated the participants perceived playing videogames to have a positive impact on their lives and their development. The motivations for playing videogames described are similar to those reported by typically developing populations. Conclusions: Videogaming is a popular leisure pursuit for adolescents and young adults with and without ASD. Speech-language pathologists should consider how videogame play may be a useful context for teaching new communication, social, and language.
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10. Holmes LG, Kirby AV, Strassberg DS, Himle MB. {{Parent Expectations and Preparatory Activities as Adolescents with ASD Transition to Adulthood}}. {J Autism Dev Disord}. 2018.
Community stakeholders, researchers, and providers are increasingly focused on individual, family, and systemic factors that contribute to positive outcomes for adults on the autism spectrum. Parent expectations for their youth’s future are associated with adult outcomes (e.g., employment, school success, independence), yet the mechanism for this effect remains unclear. This study investigated how expectations were related to parent transition-related activities in a sample of 298 parents of adolescents on the autism spectrum (48% female adolescents), stratified by parent-reported IQ (average or above, borderline, or below 70). Parent expectations for the future predicted engagement in some activities intended to enhance adult outcomes when controlling for IQ, gender, age, and household income. The results have implications for how providers discuss expectations and support families in preparing for adulthood.
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11. Israelyan N, Margolis KG. {{Serotonin as a link between the gut-brain-microbiome axis in autism spectrum disorders}}. {Pharmacological research}. 2018; 132: 1-6.
Autism-spectrum disorder (ASD) is a neurodevelopmental disorder characterized by persistent deficits in social communication and repetitive patterns of behavior. ASD is, however, often associated with medical comorbidities and gastrointestinal (GI) dysfunction is among the most common. Studies have demonstrated a correlation between GI dysfunction and the degree of social impairment in ASD. The etiology of GI abnormalities in ASD is unclear, though the association between GI dysfunction and ASD-associated behaviors suggest that overlapping developmental defects in the brain and the intestine and/or a defect in communication between the enteric and central nervous systems (ENS and CNS, respectively), known as the gut-brain axis, could be responsible for the observed phenotypes. Brain-gut abnormalities have been increasingly implicated in several disease processes, including ASD. As a critical modulator of ENS and CNS development and function, serotonin may be a nexus for the gut-brain axis in ASD. This paper reviews the role of serotonin in ASD from the perspective of the ENS. A murine model that has been demonstrated to possess brain, behavioral and GI abnormalities mimicking those seen in ASD harbors the most common serotonin transporter (SERT) based mutation (SERT Ala56) found in children with ASD. Discussion of the gut-brain manifestations in the SERT Ala56 mice, and their correction with developmental administration of a 5-HT4 agonist, are also addressed in conjunction with other future directions for diagnosis and treatment.
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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. 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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14. Kilburn TR, Sorensen MJ, Thastum M, Rapee RM, Rask CU, Arendt KB, Thomsen PH. {{Rationale and design for cognitive behavioral therapy for anxiety disorders in children with autism spectrum disorder: a study protocol of a randomized controlled trial}}. {Trials}. 2018; 19(1): 210.
BACKGROUND: Autism spectrum disorder (ASD) is found in approximately 1% of the population and includes core symptoms that affect general and social development. Beside these core symptoms, it is suggested that up to 60% of children with ASD suffer from comorbid anxiety disorders which may further affect educational, social and general development as well as quality of life. The main goal of this study is to examine the effectiveness of a manualized cognitive behavioral therapy (CBT) anxiety program adapted for children with ASD. METHODS: This study is a randomized controlled trial (RCT). Fifty children with ASD and anxiety, aged 7 to 13 years, will be randomly assigned to group CBT or a wait-list control (WL) condition. The design will follow a two (CBT and WL) by two (pre-post assessment) mixed between-within design. The control group will receive intervention after the waitlist period of 13 weeks. Primary outcomes are diagnostic status and severity of the anxiety disorders, measured with The Anxiety Disorder Interview Schedule for DSM-IV, Parent and Child Versions. Secondary outcomes are parent and child ratings on questionnaires on the child’s level of anxiety and impact on everyday life. Additional outcomes entail information gathered from parents, child and teachers on the child’s behavior and negative self-statements, together with social and adaptive skills. Follow-up data will be collected 3 months after intervention. DISCUSSION: This study aims to evaluate the effectiveness of a manualized CBT program in Danish children with ASD and anxiety within a mental health clinic setting. The hypothesis is that training anxiety reduction skills will decrease anxiety in children, as well as ensure better psychosocial development for the child in general. TRIAL REGISTRATION: https://ClinicalTrials.gov ( NCT02908321 ). Registered 19th of September 2016.
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15. 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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16. 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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17. 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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18. Lee KS, Shin YJ, Yoo HJ, Lee GJ, Ryu J, Son O, Cho SW. {{Vocalization of Emotional and Social Expressions in Korean-Speaking Toddlers with Autism Spectrum Disorder and Those with Developmental Delay}}. {Yonsei medical journal}. 2018; 59(3): 425-30.
PURPOSE: This study aimed to examine the development of socializing and emotional expressions through vocalizations and joint attention (JA) behaviors in Korean-speaking children with autism spectrum disorder (ASD), compared to those with developmental delay (DD). MATERIALS AND METHODS: Video samples were collected from 28 toddlers with ASD and 18 age-matched toddlers with DD, and vocalizations were each coded in detail for the purpose of this retrospective research. In addition to some statistical analysis, Computerized Language Analysis was conducted to obtain the final results. RESULTS: Although they produced a higher number of vocalizations than the DD group, the ASD group did not engage in emotional or social interactions with their caretakers, whereas the DD group did. The children with ASD used more atypical vocalizations and socially unengaged vocalizations than the children with DD did. JA using vocalizations in the ASD group, in particular, was largely dyadic, with triadic types occurring at a significantly lower frequency than those in the DD group. CONCLUSION: Results from this study indicate the importance of assessing early vocalizations in toddlers with ASD, suggesting that some common symptoms of ASD, such as lack of typical, emotional, and social functions in early vocalizations, could be used to develop screening and intervention programs related to ASD.
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19. 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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20. 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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21. 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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22. Shultz S, Klin A, Jones W. {{Neonatal Transitions in Social Behavior and Their Implications for Autism}}. {Trends in cognitive sciences}. 2018.
Within the context of early infant-caregiver interaction, we review a series of pivotal transitions that occur within the first 6 months of typical infancy, with emphasis on behavior and brain mechanisms involved in preferential orientation towards, and interaction with, other people. Our goal in reviewing these transitions is to better understand how they may lay a necessary and/or sufficient groundwork for subsequent phases of development, and also to understand how the breakdown thereof, when development is atypical and those transitions become derailed, may instead yield disability. We review these developmental processes in light of recent studies documenting disruptions to early-emerging brain and behavior mechanisms in infants later diagnosed with autism spectrum disorder, shedding light on the brain-behavior pathogenesis of autism.
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23. Swanson MR, Wolff JJ, Shen MD, Styner M, Estes A, Gerig G, McKinstry RC, Botteron KN, Piven J, Hazlett HC. {{Development of White Matter Circuitry in Infants With Fragile X Syndrome}}. {JAMA Psychiatry}. 2018.
Importance: Fragile X syndrome (FXS) is a genetic neurodevelopmental disorder and the most common inherited cause of intellectual disability in males. However, there are no published data on brain development in children with FXS during infancy. Objective: To characterize the development of white matter at ages 6, 12, and 24 months in infants with FXS compared with that of typically developing controls. Design, Setting, and Participants: Longitudinal behavioral and brain imaging data were collected at 1 or more time points from 27 infants with FXS and 73 typically developing controls between August 1, 2008, and June 14, 2016, at 2 academic medical centers. Infants in the control group had no first- or second-degree relatives with intellectual or psychiatric disorders, including FXS and autism spectrum disorder. Main Outcomes and Measures: Nineteen major white matter pathways were defined in common atlas space based on anatomically informed methods. Diffusion parameters, including fractional anisotropy, were compared between groups using linear mixed effects modeling. Fiber pathways showing group differences were subsequently examined in association with direct measures of verbal and nonverbal development. Results: There were significant differences in the development of 12 of 19 fiber tracts between the 27 infants with FXS (22 boys and 5 girls) and the 73 infants in the control group (46 boys and 27 girls), with lower fractional anisotropy in bilateral subcortical-frontal, occipital-temporal, temporal-frontal, and cerebellar-thalamic pathways, as well as 4 of 6 subdivisions of the corpus callosum. For all 12 of these pathways, there were significant main effects between groups but not for the interaction of age x group, indicating that lower fractional anisotropy was present and stable from age 6 months in infants with FXS. Lower fractional anisotropy values in the uncinate fasciculi were correlated with lower nonverbal developmental quotient in the FXS group (left uncinate, F = 10.06; false discovery rate-corrected P = .03; right uncinate, F = 21.8; P = .004). Conclusions and Relevance: The results substantiate in human infants the essential role of fragile X gene expression in the early development of white matter. The findings also suggest that the neurodevelopmental effects of FXS are well established at 6 months of age.
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24. Tzischinsky O, Meiri G, Manelis L, Bar-Sinai A, Flusser H, Michaelovski A, Zivan O, Ilan M, Faroy M, Menashe I, Dinstein I. {{Sleep disturbances are associated with specific sensory sensitivities in children with autism}}. {Mol Autism}. 2018; 9: 22.
Background: Sensory abnormalities and sleep disturbances are highly prevalent in children with autism, but the potential relationship between these two domains has rarely been explored. Understanding such relationships is important for identifying children with autism who exhibit more homogeneous symptoms. Methods: Here, we examined this relationship using the Caregiver Sensory Profile and the Children’s Sleep Habits Questionnaire, which were completed by parents of 69 children with autism and 62 age-matched controls. Results: In line with previous studies, children with autism exhibited more severe sensory abnormalities and sleep disturbances than age-matched controls. The sleep disturbance scores were moderately associated with touch and oral sensitivities in the autism group and with touch and vestibular sensitivities in the control group. Hypersensitivity towards touch, in particular, exhibited the strongest relationship with sleep disturbances in the autism group and single-handedly explained 24% of the variance in total sleep disturbance scores. In contrast, sensitivity in other sensory domains such as vision and audition was not associated with sleep quality in either group. Conclusions: While it is often assumed that sensitivities in all sensory domains are similarly associated with sleep problems, our results suggest that hypersensitivity towards touch exhibits the strongest relationship with sleep disturbances when examining children autism. We speculate that hypersensitivity towards touch interferes with sleep onset and maintenance in a considerable number of children with autism who exhibit severe sleep disturbances. This may indicate the existence of a specific sleep disturbance mechanism that is associated with sensitivity to touch, which may be important to consider in future scientific and clinical studies.
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25. Vahabzadeh A, Keshav NU, Salisbury JP, Sahin NT. {{Improvement of Attention-Deficit/Hyperactivity Disorder Symptoms in School-Aged Children, Adolescents, and Young Adults With Autism via a Digital Smartglasses-Based Socioemotional Coaching Aid: Short-Term, Uncontrolled Pilot Study}}. {JMIR mental health}. 2018; 5(2): e25.
BACKGROUND: People with autism spectrum disorder (ASD) commonly experience symptoms related to attention-deficit/hyperactivity disorder (ADHD), including hyperactivity, inattention, and impulsivity. One-third of ASD cases may be complicated by the presence of ADHD. Individuals with dual diagnoses face greater barriers to accessing treatment for ADHD and respond less positively to primary pharmacologic interventions. Nonpharmacologic technology-aided tools for hyperactivity and inattention in people with ASD are being developed, although research into their efficacy and safety remains limited. OBJECTIVE: The objective of this preliminary study was to describe the changes in ADHD-related symptoms in children, adolescents, and young adults with ASD immediately after use of the Empowered Brain system, a behavioral and social communication aid for ASD running on augmented reality smartglasses. METHODS: We recruited 8 children, adolescents, and young adults with ASD (male to female ratio of 7:1, mean age 15 years, range 11.7-20.5 years) through a Web-based research signup form. The baseline score on the hyperactivity subscale of the Aberrant Behavioral Checklist (ABC-H), a measure of hyperactivity, inattention, and impulsivity, determined their classification into a high ADHD-related symptom group (n=4, ABC-H>/=13) and a low ADHD-related symptom group (n=4, ABC-H<13). All participants received an intervention with Empowered Brain, where they used smartglasses-based social communication and behavioral modules while interacting with their caregiver. We then calculated caregiver-reported ABC-H scores at 24 and 48 hours after the session. RESULTS: All 8 participants were able to complete the intervention session. Postintervention ABC-H scores were lower for most participants at 24 hours (n=6, 75%) and for all participants at 48 hours (n=8, 100%). At 24 hours after the session, average participant ABC-H scores decreased by 54.9% in the high ADHD symptom group and by 20% in the low ADHD symptom group. At 48 hours after the session, ABC-H scores compared with baseline decreased by 56.4% in the high ADHD symptom group and by 66.3% in the low ADHD symptom group. CONCLUSIONS: This study provides initial evidence for the possible potential of the Empowered Brain system to reduce ADHD-related symptoms, such as hyperactivity, inattention, and impulsivity, in school-aged children, adolescents, and young adults with ASD. This digital smartglasses intervention can potentially be targeted at a broader array of mental health conditions that exhibit transdiagnostic attentional and social communication deficits, including schizophrenia and bipolar disorder. Further research is required to understand the clinical importance of these observed changes and to conduct longitudinal studies on this intervention with control groups and larger sample sizes. Lien vers le texte intégral (Open Access ou abonnement)
