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1.
Pediatr Clin North Am ; 71(2): 315-326, 2024 Apr.
Article in English | MEDLINE | ID: mdl-38423723

ABSTRACT

When pediatricians, autistic people, and their families carefully consider and plan for the transition from pediatric care to adult care, there are better outcomes for patients. Pediatricians see their patients over time and are uniquely positioned to help prepare for the changes that come with the transition through adolescents to adulthood. Although programs such as Got Transition offer some guidance on how to navigate the transition from pediatric care to adult care, there is less information on how to help those on the autism spectrum and their families transition to adulthood in other ways.


Subject(s)
Autistic Disorder , Adult , Child , Humans , Adolescent , Autistic Disorder/therapy , Caregivers , Pediatricians
2.
Psychopharmacology (Berl) ; 241(1): 19-32, 2024 Jan.
Article in English | MEDLINE | ID: mdl-38086927

ABSTRACT

RATIONALE: Autism spectrum disorder (ASD) is characterized by impaired social communication and is also frequently characterized by co-occurring anxiety. Propranolol is widely utilized to treat performance and public speaking anxiety. Single-dose psychopharmacological challenge studies suggested benefits using propranolol for verbal tasks and social interaction. OBJECTIVE: We conducted a double-blinded, placebo-controlled trial of the ß-adrenergic antagonist propranolol in ASD for social interaction, anxiety, and language. METHODS: Seventy-four participants with ASD, age 7-24 years, were enrolled and randomized to a 12-week course of propranolol or placebo, with blinded assessments at baseline, 6 weeks, and 12 weeks. The primary outcome was the General Social Outcome Measure-2 (GSOM-2) for social interaction, and secondary outcomes were the Clinician Global Clinical Impression-Improvement (CGI-I) ratings independently conducted for social interaction, anxiety, and language at 6 weeks and 12 weeks. RESULTS: Sixty-nine participants completed the 12-week visit. No significant effect of drug was found for the GSOM-2 or the CGI-I for social interaction or language. CGI-I for anxiety showed greater improvement with propranolol at the 12-week time point (p = 0.045, odds ratio = 2.58 (95% CI = 1.02-6.52). Expected decreases in heart rate and blood pressure were observed with propranolol, and side effects were uncommon. CONCLUSIONS: Propranolol did not impact social interaction measures or language, but there were indications of a beneficial effect for anxiety. This will need confirmation in a larger multicenter trial, monitoring markers or characteristics to identify those participants most likely to respond to propranolol for anxiety, and determine whether there is a subset of participants that are responsive for other previously reported outcomes.


Subject(s)
Autism Spectrum Disorder , Propranolol , Child , Humans , Young Adult , Adolescent , Adult , Autism Spectrum Disorder/drug therapy , Adrenergic beta-Antagonists , Anxiety/drug therapy , Communication , Treatment Outcome
3.
Lancet Child Adolesc Health ; 7(12): 897-908, 2023 12.
Article in English | MEDLINE | ID: mdl-37973254

ABSTRACT

Emerging evidence suggests that the higher prevalence of autism in individuals who are assigned male than assigned female at birth results from both biological factors and identification biases. Autistic individuals who are assigned female at birth (AFAB) and those who are gender diverse experience health disparities and clinical inequity, including late or missed diagnosis and inadequate support. In this Viewpoint, an international panel of clinicians, scientists, and community members with lived experiences of autism reviewed the challenges in identifying autism in individuals who are AFAB and proposed clinical and research directions to promote the health, development, and wellbeing of autistic AFAB individuals. The recognition challenges stem from the interplay between cognitive differences and nuanced or different presentations of autism in some AFAB individuals; expectancy, gender-related, and autism-related biases held by clinicians; and social determinants. We recommend that professional development for clinicians be supported by health-care systems, professional societies, and governing bodies to improve equitable access to assessment and earlier identification of autism in AFAB individuals. Autistic AFAB individuals should receive tailored support in education, identity development, health care, and social and professional sense of belonging.


Subject(s)
Autistic Disorder , Infant, Newborn , Humans , Male , Female , Autistic Disorder/diagnosis , Autistic Disorder/epidemiology , Autistic Disorder/psychology , Gender Identity , Research , Interpersonal Relations , Prevalence
4.
Autism Res ; 16(8): 1619-1629, 2023 08.
Article in English | MEDLINE | ID: mdl-37519223

ABSTRACT

Autistic adults experience significant unmet healthcare needs, with opportunities for improvement in both the systems and the practitioners who serve this population. Primary care physicians/practitioners (PCPs) are a natural choice to provide comprehensive care to autistic adults but often lack experience in serving this population. This pilot study developed and tested an Extension for Community Healthcare Outcomes (ECHO) Autism model adapted from our previous work, focused specifically on training PCPs in best-practice care for autistic adults. The project was informed directly by the perspectives and preferences of autistic adults, caregivers, and PCPs. Two consecutive cohorts of PCPs participated in ECHO Autism Adult Healthcare sessions. Each cohort met 1 h twice a month for 6 months, with 37 PCPs (n = 20 in Cohort 1, and n = 17 in Cohort 2) participating. Based on findings from the first cohort, adjustments were made to refine the session preparation, curriculum, conduct of the ECHO, resources, and evaluation. After participation in the ECHO Autism program, PCP self-efficacy and satisfaction improved, while the number of perceived barriers did not change. Knowledge did not improve significantly in Cohort 1, but after adjustments to the training model, participants in Cohort 2 showed significant knowledge gains. While attention to systems of care is critical to addressing barriers in healthcare in the autistic population, the ECHO Autism Adult Healthcare model is feasible and holds promise for improving PCP satisfaction and self-efficacy in working with autistic adults.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Humans , Adult , Autistic Disorder/therapy , Pilot Projects , Autism Spectrum Disorder/therapy , Self Efficacy , Delivery of Health Care
5.
J Autism Dev Disord ; 2023 Jun 26.
Article in English | MEDLINE | ID: mdl-37358787

ABSTRACT

Children with autism spectrum disorder (ASD) report high rates of sleep problems. In 2012, the Autism Treatment Network/ Autism Intervention Research Network on Physical Health (ATN/AIR-P) Sleep Committee developed a pathway to address these concerns. Since its publication, ATN/AIR-P clinicians and parents have identified night wakings as a refractory problem unaddressed by the pathway. We reviewed the existing literature and identified 76 scholarly articles that provided data on night waking in children with ASD. Based on the available literature, we propose an updated practice pathway to identify and treat night wakings in children with ASD.

6.
J Dev Behav Pediatr ; 44(3): e177-e184, 2023 04 01.
Article in English | MEDLINE | ID: mdl-36978232

ABSTRACT

OBJECTIVE: Children can be reliably diagnosed with autism spectrum disorder (ASD) by a highly trained clinician as early as 12 to 24 months of age, but recent estimates indicate that the average age of diagnosis is 4.4 years. We hypothesized that trained primary care physicians and practitioners can reliably and accurately diagnose children 14 to 48 months with unambiguous symptoms of ASD. METHODS: Through this diagnostic accuracy study, 20 patients diagnosed with ASD by clinicians trained through the ECHO (Extension for Community Healthcare Outcomes) Autism STAT program participated in an independent gold-standard evaluation at a regional autism center. Caregiver perceptions of the diagnostic process were also assessed. RESULTS: Of the 20 patients who received a diagnosis of ASD by a trained clinician and completed the study, 19 diagnoses were confirmed by a gold-standard evaluation. Caregivers indicated that undergoing diagnosis in their local community rather than an autism specialty center was helpful (4.8/5 on a 5-point Likert scale, n = 19). Results of this study demonstrate that primary care clinicians can be trained to reliably diagnose ASD in children 14 to 48 months with unambiguous symptoms. CONCLUSION: Diagnosis in the primary care setting may lead to earlier diagnosis and quicker connection to evidence-based therapies and interventions. Given the potential impact of increasing access to high-quality diagnostic services, the role of primary care clinicians in the diagnosis of ASD should be further evaluated.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Child , Humans , Child, Preschool , Autism Spectrum Disorder/diagnostic imaging , Autism Spectrum Disorder/therapy , Early Diagnosis , Community Health Services , Primary Health Care
7.
Autism Adulthood ; 5(1): 51-62, 2023 Mar 01.
Article in English | MEDLINE | ID: mdl-36941853

ABSTRACT

Background: Autistic adults have high rates of co-occurring health conditions, suicide, and premature mortality, yet often experience health care barriers and poor health outcomes. A better understanding of the health care needs and experiences of autistic adults is essential for improving the health care system and patient experience. Methods: This study examined the perspectives of autistic adults regarding their health care experiences in primary care and other settings and their suggestions for improvement using both qualitative and quantitative methods. Twenty autistic adults (aged 18-35 years, 65% male) completed surveys and individual semi-structured interviews. Results: Qualitative data analysis results revealed 10 subthemes across 3 overarching themes: (1) system- and clinic-level factors affect access to care, (2) aspects of the clinic environment affect health care experiences, and (3) provider knowledge and practices affect health care experiences. Within the first theme, participants described barriers to obtaining services, including scheduling logistics, costs and inadequate insurance coverage, and transportation barriers. The second theme focused on aspects of the clinic environment that participants found especially relevant to their health care experiences and that required specific accommodations. This included sensory input, anxiety-provoking situations and procedures, and wait time. Within the third theme, participants emphasized aspects of providers' care that affected their health care experiences. Key factors included provider knowledge about autism, communication, rapport, and individualized care and patient-provider partnerships. Conclusion: Overall, the findings point to a need for provider training and improvements to the health care delivery system to better meet the unique needs of autistic adults.


Why is this an important issue?: Receiving good health care is important for health and well-being. Understanding autistic adults' perspectives on their health care experiences will help identify ways that health care services can be improved to better meet their needs and preferences in the future. What was the purpose of this study?: The purpose of this study was to learn from autistic adults about their health care needs, experiences, and suggestions for improvement. What did the researchers do?: The researchers asked autistic adults in the United States to complete a survey and participate in an interview over Zoom. The survey and interview questions asked about their experiences receiving health care services and suggestions for how to improve health care services for autistic adults. What were the results of the study?: Twenty autistic adults between the ages of 18 and 35 years participated in this study. Most participants were men (65%) and most were White (75%). The participants shared many important insights about their primary health care experiences and experiences in other health care settings. The results fell into main "themes" or ideas that people had in common. These themes are not listed in any particular order. Autistic adults described many factors that make it hard to access to care, such as getting an appointment, finding transportation, or paying for health care. They explained that the clinic environment needs to be better suited to their needs, such as having a quiet place to wait or sensory accommodations. Participants wanted their doctors to know more about autism and to be able to connect and communicate with them. They also wanted their doctors to partner with them to make sure their health care treatment plan is acceptable and understandable. What do these findings add to what was already known?: These findings show that autistic adults in the United States face many barriers in receiving health care. Some recommendations for improvement may be helpful for all patients, such as being able to book appointments online or having a doctor who does not rush you. Other improvements need to be tailored to the unique needs of autistic patients, such sensory accommodations or autism training for doctors and clinic staff. What are potential weaknesses in the study?: Because the study was small and only included adults who were able to share about their experiences during an interview, these results may not apply to all autistic adults. Another limitation is that the study was designed and carried out by non-autistic (allistic) researchers, who have different perspectives from autistic people. We asked participants to help us interpret our findings to help address this limitation. How will these findings help autistic adults in the future?: The insights from this study provide a lot of recommendations about how health care services can be improved to better meet the needs and preferences of autistic adults in the future.

8.
Front Psychiatry ; 13: 909947, 2022.
Article in English | MEDLINE | ID: mdl-36101706

ABSTRACT

Background: For families with autistic children living in rural areas, limited access to services partly results from a shortage of providers and extensive travel time. Telehealth brings the possibility of implementing alternative delivery modalities of Parent Mediated Interventions (PMIs) with the potential to decrease barriers to accessing services. This study aimed to evaluate the feasibility and acceptability of implementing the World Health Organization-Caregivers Skills Training program (WHO-CST) via an online, synchronous group format in rural Missouri. Methods: We used a mixed methods design to collect qualitative and quantitative data from caregivers and program facilitators at baseline and the end of the program, following the last home visit. Caregivers of 14 autistic children (3-7 years), residents of rural Missouri, completed nine virtual sessions and four virtual home visits. Results: Four main themes emerged from the focus groups: changes resulting from the WHO-CST, beneficial aspects of the program, advantages and disadvantages of the online format, and challenges to implementing the WHO-CST via telehealth. The most liked activity was the demonstration (36%), and the least liked was the practice with other caregivers. From baseline to week 12, communication skills improved in both frequency (p < 0.05) and impact (p < 0.01), while atypical behaviors decreased (p < 0.01). For caregivers' outcomes, only confidence in skills (p < 0.05) and parental sense of competence (p < 0.05) showed a positive change. Conclusion: Our results support the feasibility of implementing the WHO-CST program via telehealth in a US rural setting. Caregivers found strategies easy to follow, incorporated the program into their family routines, and valued the group meetings that allowed them to connect with other families. A PMI such as the WHO-CST, with cultural and linguistic adaptations and greater accessibility via telehealth-plays an essential role in closing the treatment gap and empowering caregivers of autistic children.

9.
JMIR Res Protoc ; 11(7): e37576, 2022 Jul 19.
Article in English | MEDLINE | ID: mdl-35852831

ABSTRACT

BACKGROUND: The Extension for Community Health Outcomes (ECHO) Autism Program trains clinicians to screen, diagnose, and care for children with autism spectrum disorder (ASD) in primary care settings. This study will assess the feasibility and impact of integrating an artificial intelligence (AI)-based ASD diagnosis aid (the device) into the existing ECHO Autism Screening Tool for Autism in Toddlers and Young Children (STAT) diagnosis model. The prescription-only Software as a Medical Device, designed for use in children aged 18 to 72 months at risk for developmental delay, produces ASD diagnostic recommendations after analyzing behavioral features from 3 distinct inputs: a caregiver questionnaire, 2 short home videos analyzed by trained video analysts, and a health care provider questionnaire. The device is not a stand-alone diagnostic and should be used in conjunction with clinical judgment. OBJECTIVE: This study aims to assess the feasibility and impact of integrating an AI-based ASD diagnosis aid into the ECHO Autism STAT diagnosis model. The time from initial ECHO Autism clinician concern to ASD diagnosis is the primary end point. Secondary end points include the time from initial caregiver concern to ASD diagnosis, time from diagnosis to treatment initiation, and clinician and caregiver experience of device use as part of the ASD diagnostic journey. METHODS: Research participants for this prospective observational study will be patients suspected of having ASD (aged 18-72 months) and their caregivers and up to 15 trained ECHO Autism clinicians recruited by the ECHO Autism Communities research team from across rural and suburban areas of the United States. Clinicians will provide routine clinical care and conduct best practice ECHO Autism diagnostic evaluations in addition to prescribing the device. Outcome data will be collected via a combination of electronic questionnaires, reviews of standard clinical care records, and analysis of device outputs. The expected study duration is no more than 12 months. The study was approved by the institutional review board of the University of Missouri-Columbia (institutional review board-assigned project number 2075722). RESULTS: Participant recruitment began in April 2022. As of June 2022, a total of 41 participants have been enrolled. CONCLUSIONS: This prospective observational study will be the first to evaluate the use of a novel AI-based ASD diagnosis aid as part of a real-world primary care diagnostic pathway. If device integration into primary care proves feasible and efficacious, prolonged delays between the first ASD concern and eventual diagnosis may be reduced. Streamlining primary care ASD diagnosis could potentially reduce the strain on specialty services and allow a greater proportion of children to commence early intervention during a critical neurodevelopmental window. TRIAL REGISTRATION: ClinicalTrials.gov NCT05223374; https://clinicaltrials.gov/ct2/show/NCT05223374. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/37576.

10.
NPJ Digit Med ; 5(1): 57, 2022 May 05.
Article in English | MEDLINE | ID: mdl-35513550

ABSTRACT

Autism spectrum disorder (ASD) can be reliably diagnosed at 18 months, yet significant diagnostic delays persist in the United States. This double-blinded, multi-site, prospective, active comparator cohort study tested the accuracy of an artificial intelligence-based Software as a Medical Device designed to aid primary care healthcare providers (HCPs) in diagnosing ASD. The Device combines behavioral features from three distinct inputs (a caregiver questionnaire, analysis of two short home videos, and an HCP questionnaire) in a gradient boosted decision tree machine learning algorithm to produce either an ASD positive, ASD negative, or indeterminate output. This study compared Device outputs to diagnostic agreement by two or more independent specialists in a cohort of 18-72-month-olds with developmental delay concerns (425 study completers, 36% female, 29% ASD prevalence). Device output PPV for all study completers was 80.8% (95% confidence intervals (CI), 70.3%-88.8%) and NPV was 98.3% (90.6%-100%). For the 31.8% of participants who received a determinate output (ASD positive or negative) Device sensitivity was 98.4% (91.6%-100%) and specificity was 78.9% (67.6%-87.7%). The Device's indeterminate output acts as a risk control measure when inputs are insufficiently granular to make a determinate recommendation with confidence. If this risk control measure were removed, the sensitivity for all study completers would fall to 51.6% (63/122) (95% CI 42.4%, 60.8%), and specificity would fall to 18.5% (56/303) (95% CI 14.3%, 23.3%). Among participants for whom the Device abstained from providing a result, specialists identified that 91% had one or more complex neurodevelopmental disorders. No significant differences in Device performance were found across participants' sex, race/ethnicity, income, or education level. For nearly a third of this primary care sample, the Device enabled timely diagnostic evaluation with a high degree of accuracy. The Device shows promise to significantly increase the number of children able to be diagnosed with ASD in a primary care setting, potentially facilitating earlier intervention and more efficient use of specialist resources.

11.
Clin Pediatr (Phila) ; 61(8): 518-522, 2022 09.
Article in English | MEDLINE | ID: mdl-35470694

ABSTRACT

Autism spectrum disorder (ASD) is estimated to affect 1 in 44 children in the United States. Disparities exist related to socioeconomic, racial/ethnic and geographic demographics. Due to the shortages of autism specialists in diagnosis, treatment and education for people with ASD, novel approaches to improve access to best practices are needed to ensure quality services. ECHO Autism: Early Intervention clinic consists of biweekly sessions focused on early identification and management of evidence-based practices for young children with ASD. It is an adaptation of the ECHO Autism clinic that has been proven effective for primary care providers. The clinic provides a safe, virtual learning environment where diverse professionals who work with children at risk or diagnosed with ASD can collaborate and learn together. ECHO Autism: Early Intervention bridges the care gap between autism specialists, community intervention providers, and children with autism to increase capacity for autism intervention best practices in underserved communities. Through participation in this convenient, web-based small group, the providers get specific case guidance on children at risk or diagnosed with autism and share best practices for autism specific interventions. Finally, the clinic connects participants with community resources, and family/caregiver support. In our article, we address the current challenge of access to quality early intervention specific to ASD in rural and underserved communities and how this issue can be addressed through a virtual ECHO Autism clinic. The aim of this concept article is to describe the innovative ECHO Autism: Early Intervention clinic and discuss its benefits and impact in the field.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Autism Spectrum Disorder/diagnosis , Autism Spectrum Disorder/therapy , Autistic Disorder/diagnostic imaging , Autistic Disorder/therapy , Caregivers , Child , Child, Preschool , Early Intervention, Educational , Humans , Rural Population , United States
12.
Brain Sci ; 12(3)2022 Feb 28.
Article in English | MEDLINE | ID: mdl-35326283

ABSTRACT

Individuals with autism spectrum disorder (ASD) struggle to access high-quality health care due to the shortage of trained providers. ECHO (Extension for Community Healthcare Outcomes) Autism is a unique educational program that allows ASD experts to provide knowledge and skills to professionals in local communities to deliver evidence-based care to children with ASD and their families. The model teaches clinicians how to screen and diagnose ASD, as well as manage common co-occurring medical and mental health issues. ECHO Autism is particularly useful for addressing the complex needs of children with ASD and reducing disparities often present in rural and underserved communities. The model can be disseminated globally due to its flexibility in accommodating local and regional differences in social norms and constructs. This article provides an overview of the format of the ECHO Autism model, data supporting the model's efficacy, and discusses future research directions.

13.
J Contin Educ Health Prof ; 42(1): e53-e59, 2022 01 01.
Article in English | MEDLINE | ID: mdl-34609351

ABSTRACT

INTRODUCTION: Project Extension for Community Healthcare Outcomes (ECHO) is used to increase provider capacity in a wide range of health care specialties. ECHO Autism: Center Engagement is a program that promotes improvement in autism care by improving the management of autism care centers. The program's focus brought experienced clinicians together as both facilitators and participants in an ECHO series. ECHO Autism: Center Engagement facilitators devised a reflective writing exercise to prospectively study their experience leading this new curriculum. METHODS: Drawing on a qualitative thematic analysis of longitudinal reflective writing exercises from seven "Hub Team" facilitators, we describe how ECHO leaders cultivate a learning environment that emphasizes shared learning and acknowledges the expertise of ECHO participants. RESULTS: The analysis generated three main themes: (1) Hub Team facilitators valued reciprocal exchange with Spoke sites, a theme we name "shared learning," (2) Hub Team facilitators demonstrated high levels of awareness about their facilitation styles, and (3) Hub Team facilitators cultivated an interactional style they described as "all teach, all learn." DISCUSSION: Examining the experiences of ECHO facilitators produces qualitative accounts of continuing professional development that may not be captured in other program evaluation approaches. In the case of ECHO Autism: Center Engagement, facilitators cultivated an environment of shared learning, which acknowledged the expertise of both facilitators and participants. These findings are pertinent for scholars of continuing education in health professions who lead educational programs where participants and facilitators have high levels of overlap in their areas of expertise and years of experience.


Subject(s)
Autistic Disorder , Leadership , Autistic Disorder/therapy , Curriculum , Education, Continuing , Humans , Program Evaluation
14.
Autism Res ; 14(11): 2251-2259, 2021 11.
Article in English | MEDLINE | ID: mdl-34553489

ABSTRACT

The COVID-19 pandemic has posed unique challenges for families and caregivers, as well as for autism-focused clinicians, who are faced with providing a thorough and accurate evaluation of children's specific needs and diagnoses in the absence of in-person assessment tools. The shift to telehealth assessments has challenged clinicians to reconsider approaches and assumptions that underlie the diagnostic assessment process, and to adopt new ways of individualizing standard assessments according to family and child needs. Mandates for physical distancing have uncovered deficiencies in diagnostic practices for suspected autism and have illuminated biases that have posed obstacles preventing children and families from receiving the services that they truly need. This Commentary outlines several considerations for improving diagnostic practices as we move forward from the current pandemic and continue to strive to build an adaptable, sustainable, equitable, and family-centered system of care. LAY SUMMARY: Physical distancing and the abrupt end to in-person services for many children on the autism spectrum has forced clinicians to examine the existing challenges with autism spectrum disorder (ASD) diagnostic assessment and consider things they want to keep and things that should be changed in the years ahead. New approaches such as telehealth both alleviated and exacerbated existing disparities, and brought into stark focus the importance of equitable and timely access to family-centered care. This commentary suggests ways of improving clinical practices related to ASD assessment to continue along this path.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , COVID-19 , Autism Spectrum Disorder/diagnosis , Autism Spectrum Disorder/epidemiology , Child , Humans , Pandemics , SARS-CoV-2
15.
BMJ Open ; 11(8): e045944, 2021 08 25.
Article in English | MEDLINE | ID: mdl-34433593

ABSTRACT

INTRODUCTION: Insomnia affects up to 80% of children with autism spectrum disorder (ASD). Negative consequences of insomnia in ASD include decreased quality of life (QOL), impaired learning and cognition, increased stereotypic and challenging behaviours, and increased parental stress. Cognitive behavioural treatment for childhood insomnia (CBT-CI) is a promising treatment for dealing with insomnia and its negative consequences but has not yet been studied in school-aged children with ASD and comorbid insomnia. Access to healthcare is another challenge for children with ASD, particularly in rural and underserved regions. Previous studies indicate that ASD and insomnia share common arousal-based underpinnings, and we hypothesise that CBT-CI will reduce the hyperarousal associated with insomnia and ASD. This trial will be the first to examine CBT-CI adapted for children with ASD and will provide new information about two different modes of delivery across a variety of primary and secondary child and parent sleep and related outcomes. Knowledge obtained from this trial might allow us to develop new or modify current treatments to better target childhood insomnia and ASD. METHODS AND ANALYSIS: Children (N=180) 6-12 years of age with ASD and insomnia will be recruited from an established autism database, a paediatric clinic and community outreach in the Columbia, MO and surrounding areas. Participants will be randomised to CBT-CI adapted for children with ASD (in-person or remote using computers with cameras) or Sleep Hygiene and Related Education. Participants will be assessed at baseline, post-treatment, 6-month and 12-month follow-ups. The following assessments will be completed regarding the children: objective and subjective sleep, daytime functioning (adaptive functioning, attention, challenging behaviours, anxiety), QOL and physiological arousal (heart rate variability) and parents: objective and subjective sleep, daytime functioning (anxiety, depression, fatigue), QOL, physiological arousal and parental burden/stress. ETHICS AND DISSEMINATION: Ethics approval was obtained in January 2020 from the University of Missouri. Ethics approval was obtained in July 2020 from the US Army Medical Research and Development Command, Office of Research Protections and Human Research Protection Office. All data are expected to be collected by 2024. Full trial results are planned to be published by 2025. Secondary analyses of baseline data will be subsequently published. TRIAL REGISTRATION NUMBER: NCT04545606; Pre-results.


Subject(s)
Autism Spectrum Disorder , Intellectual Disability , Sleep Initiation and Maintenance Disorders , Autism Spectrum Disorder/complications , Autism Spectrum Disorder/therapy , Child , Humans , Quality of Life , Randomized Controlled Trials as Topic , Schools , Sleep Initiation and Maintenance Disorders/therapy
16.
Autism Res ; 14(6): 1271-1283, 2021 06.
Article in English | MEDLINE | ID: mdl-33682319

ABSTRACT

Challenges associated with the current screening and diagnostic process for autism spectrum disorder (ASD) in the US cause a significant delay in the initiation of evidence-based interventions at an early age when treatments are most effective. The present study shows how implementing a second-order diagnostic measure to high risk cases initially flagged positive from screening tools can further inform clinical judgment and substantially improve early identification. We use two example measures for the purposes of this demonstration; a saliva test and eye-tracking technology, both scalable and easy-to-implement biomarkers recently introduced in ASD research. Results of the current cost-savings analysis indicate that lifetime societal cost savings in special education, medical and residential care are estimated to be nearly $580,000 per ASD child, with annual cost savings in education exceeding $13.3 billion, and annual cost savings in medical and residential care exceeding $23.8 billion (of these, nearly $11.2 billion are attributable to Medicaid). These savings total more than $37 billion/year in societal savings in the US. Initiating appropriate interventions faster and reducing the number of unnecessary diagnostic evaluations can decrease the lifetime costs of ASD to society. We demonstrate the value of implementing a scalable highly accurate diagnostic in terms of cost savings to the US. LAY SUMMARY: This paper demonstrates how biomarkers with high accuracy for detecting autism spectrum disorder (ASD) could be used to increase the efficiency of early diagnosis. Results also show that, if more children with ASD are identified early and referred for early intervention services, the system would realize substantial costs savings across the lifespan.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Autism Spectrum Disorder/diagnosis , Biomarkers , Child , Early Diagnosis , Humans , Mass Screening , United States
17.
J Dev Behav Pediatr ; 42(5): 355-362, 2021.
Article in English | MEDLINE | ID: mdl-33507041

ABSTRACT

OBJECTIVE: Using standardized screening tools increases accuracy in early identification of autism. The American Academy of Pediatrics recommends systematic developmental screening at all 9-, 18-, and 24- or 30-month well-child visits (WCVs) and autism-specific screening at all 18- and 24-month WCVs. The study objectives were to examine the extent to which these guidelines have been adopted in practice among primary care providers (PCPs) and to identify potential provider-level factors associated with screening practices. METHOD: Participants included 94 PCPs (79% pediatricians) from 13 states enrolled in a study of an autism training program. Self-report and chart-review data collected before training were examined. Screening practices were assessed through chart review of all 9-, 18-, and 24-month WCVs within a 30-day window. RESULTS: Sixty-four percent of PCPs administered developmental screening tools at all 9-month WCVs, and 62% at all 18-month WCVs. Fifty-one percent administered autism screening tools at all 18-month WCVs, and 41% at all 24-month WCVs. Screening practices varied by provider type (pediatrician vs other PCP), self-efficacy in screening and identification, and previous autism training (autism screening only), but not by years of experience. CONCLUSION: Overall, general developmental and autism-specific screenings are not being consistently administered across recommended WCVs in primary care practices. Provider self-efficacy in autism identification and screening and previous autism training were associated with increased autism screening. As such, these results suggest a need for increased training and dissemination of information on screening implementation for practicing PCPs.


Subject(s)
Autistic Disorder , Autistic Disorder/diagnosis , Child , Health Personnel , Humans , Mass Screening , Primary Health Care , United States
18.
OTJR (Thorofare N J) ; 41(3): 169-174, 2021 07.
Article in English | MEDLINE | ID: mdl-33435833

ABSTRACT

This study identifies and describes feeding concerns of parents of children with autism spectrum disorder (ASD) and examines the extent to which parents relate those concerns as having been addressed by therapists. Survey data were collected from 113 parents of children with ASD. Of the parents surveyed, 68% described a past or present concern with feeding; 60% of those parents with concerns said a therapist had not addressed those concerns. Feeding concerns were more likely addressed when therapists shared parent's concerns. Specific types of concerns, such as those around food selectivity and food refusal, were more likely addressed than difficulties around mealtime. A gap is identified between parental report of feeding difficulties and parental report of professional services addressing feeding needs. This analysis presents an opportunity for occupational therapists in the area of feeding, particularly around identifying and addressing parental concerns.


Subject(s)
Autism Spectrum Disorder , Child , Food Preferences , Humans , Meals , Parents , Surveys and Questionnaires
19.
J Patient Exp ; 8: 23743735211065292, 2021.
Article in English | MEDLINE | ID: mdl-34988286

ABSTRACT

Introduction: Primary care clinicians report inadequate training and lack of support regarding identification of early signs of Autism Spectrum Disorder (ASD), resulting in later diagnosis and poor outcomes. The objective of this study was to evaluate the perception of participants in ECHO Autism project regarding the value of the virtual collaborative as a mentoring tool. Methods: We completed a retrospective cross-sectional study of post-virtual clinic surveys of all participants who attended Autism ECHO from September 2, 2015 to June 5, 2019. Results: There were 87 Autism ECHO sessions held, with 83 didactic presentations. A total of 92 de-identified patient cases were discussed with 490 unique learners in attendance. Participants reported increase in self-efficacy in identifying ASD symptoms in children, assessing medical comorbidities, and learning new information. Discussion: Continuing education platforms in healthcare professions are increasingly embracing virtual live-interactive conferences. They provide opportunities to connect with experts, but also hear from peers regarding real-life case examples. During COVID-19 pandemic ECHO Autism was a lifeline for rural providers and will likely continue to increase in participation.

20.
Front Psychiatry ; 12: 824933, 2021.
Article in English | MEDLINE | ID: mdl-35126215

ABSTRACT

Gastrointestinal (GI) disorders are common in children with neurodevelopmental disorders such as autism spectrum disorder (ASD). A limited understanding of the biologic factors that predispose this population to GI disorders has prevented development of individualized therapies to address this important medical issue. The goal of the current study was to determine if elements of the salivary micro-transcriptome could provide insight into the biologic perturbations unique to children with ASD-related GI disturbance. This cohort study included 898 children (ages 18-73 months) with ASD, non-ASD developmental delay (DD), or typical development (TD). The saliva micro-transcriptome of each child was assessed with RNA-seq. Outputs were aligned to microbial and human databases. A Kruskal Wallis analysis of variance (ANOVA) was used to compare levels of 1821 micro-transcriptome features across neurodevelopmental status (ASD, DD, or TD) and GI presence or absence. An ANOVA was also used to compare micro-transcriptome levels among GI sub-groups (constipation, reflux, food intolerance, other GI condition, no GI condition), and to identify RNAs that differed among children taking three common GI medications (probiotics, reflux medication, or laxatives). Relationships between features identified in ANOVA testing were examined for associations with scores on the Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2) and the Vineland Adaptive Behavior Scales. GI disturbance rates were higher among children with ASD than peers with TD but were similar to those with DD. Five piwi-interacting RNAs and three microbial RNAs displayed an interaction between developmental status and GI disturbance. Fifty-seven salivary RNAs differed between GI sub-groups-with microRNA differences between food intolerance and reflux groups being most common. Twelve microRNAs displayed an effect of GI disturbance and showed association with GI medication uses and measures of behavior. These 12 microRNAs displayed enrichment for 13 physiologic pathways, including metabolism/digestion long-term depression, and neurobiology of addiction. This study identifies salivary micro-transcriptome features with differential expression among children with ASD-related GI disturbance. A subset of the RNAs displays relationships with treatment modality and are associated with autistic behaviors. The pathobiologic targets of the micro-transcriptome markers may serve as targets for individualized therapeutic interventions aimed at easing pain and behavioral difficulties seen in ASD-related GI disturbance.

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