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1.
J Autism Dev Disord ; 2024 Jan 17.
Article in English | MEDLINE | ID: mdl-38231382

ABSTRACT

PURPOSE: To understand the ways in which autistic Latinx children experience disparities in diagnosis, healthcare, and receipt of specialty services. METHODS: 417 individuals who identified as Latinx caregivers of autistic children who were members of the same integrated healthcare system in Northern California were surveyed. Responses were analyzed using the child's insurance coverage (Government or Commercial) and caregiver's primary language (Spanish or English). RESULTS: Compared to the commercially-insured, government-insured participants accessed several services at a higher rate and were less likely to cite the high cost of co-pays as a barrier. CONCLUSION: There were no significant differences in service access by language status, but Spanish speakers were more likely to cite health literacy as a barrier to receiving care.

2.
Autism ; 28(3): 770-779, 2024 Mar.
Article in English | MEDLINE | ID: mdl-37530121

ABSTRACT

LAY ABSTRACT: In this article, we propose recommendations on what we can do to promote that autistic people can enjoy their sexuality and gender identity, because that contributes to overall well-being.First, we briefly summarize the existing research on sexuality and gender diversity in autistic individuals.Next, we propose recommendations for how to promote sexual and gender diversity-related health and well-being. Based on what is known about sexuality, gender diversity, and relationships in autistic adolescents and adults, we convened an international group of autistic and non-autistic researchers, advocates, parents, and professionals to develop recommendations to promote sexual and gender health in autistic people.The resulting recommendations were checked through an online survey distributed to autistic people across the world. The online participants endorsed the importance of eight final recommendations related to:1. Providing education and information on sexuality, relationships, and gender diversity to autistic individuals and their families;2. Improving expertise in and accessibility to healthcare for sexuality, relationships, and gender-related questions, with specific attention to prevention of and support after sexual victimization; and3. Meaningfully including the autism community in future research that addresses well-being relating to sexuality, relationships, and gender diversity.These community-driven recommendations aim to promote sexual health and well-being in autistic individuals internationally.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Adult , Humans , Female , Adolescent , Male , Gender Identity , Sexuality , Policy
3.
Cureus ; 15(8): e44388, 2023 Aug.
Article in English | MEDLINE | ID: mdl-37779815

ABSTRACT

INTRODUCTION: Autistic individuals, now representing one in 36 individuals in the U.S., experience disproportionate physical health challenges relative to non-autistic individuals. The Health Resources and Services Administration's (HRSA) Autism Intervention Research Network on Physical Health (AIR-P) is an interdisciplinary, multi-center Research Network that aims to increase the health, well-being, and quality of life of autistic individuals. The current paper builds on the initial AIR-P Research Agenda (proposed in Year 1) and provides an updated vision for the Network. METHODS: Updates to the Research Agenda were made via the administration of a Qualtrics survey, and disseminated widely to all AIR-P entities, including the Research Node Leaders, Steering Committee, Autistic Researcher Review Board, and collaborating academic and non-academic entities. Network members were tasked with evaluating the Year 1 Research Agenda and proposing additional priorities. RESULTS: Within each Research Node, all Year 1 priorities were endorsed as continued priorities for research on autism and physical health. Specific topics, including co-occurring conditions and self-determination, advocacy, and decision-making, were particularly endorsed. Opportunities for exploratory studies and intervention research were identified across Research Nodes. Qualitative responses providing feedback on additional research priorities were collected. CONCLUSION: The updated AIR-P Research Agenda represents an important step toward enacting large-scale health promotion efforts for autistic individuals across the lifespan. This updated agenda builds on efforts to catalyze autism research in historically underrepresented topic areas while adopting a neurodiversity-oriented approach to health promotion.

4.
BMC Pediatr ; 23(1): 128, 2023 03 20.
Article in English | MEDLINE | ID: mdl-36941585

ABSTRACT

BACKGROUND: All families experience financial and time costs related to caring for their children's health. Understanding the economic burden faced by families of children with chronic health conditions (CHC) is crucial for designing effective policies to support families. METHODS: In this prospective study we used electronic health records to identify children between 3 and 17 years old with autism spectrum disorder (ASD), asthma, or neither (control) from three Kaiser Permanente regions and several community health centers in the OCHIN network. We oversampled children from racial and ethnic minority groups. Parent/guardian respondents completed surveys three times, approximately four months apart. The surveys included the Family Economic Impact Inventory (measuring financial, time, and employment costs of caring for a child's health), and standardized measures of children's quality of life, behavioral problems, and symptom severity for children with ASD or asthma. We also assessed parenting stress and parent physical and mental health. All materials were provided in English and Spanish. RESULTS: Of the 1,461 families that enrolled (564 ASD, 468 asthma, 429 control), children were predominantly male (79%), with a mean age of 9.0 years, and racially and ethnically diverse (43% non-Hispanic white; 22% Hispanic; 35% Asian, Black, Native Hawaiian, or another race/ethnicity). The majority of survey respondents were female (86%), had a college degree (62%), and were married/partnered (79%). ASD group respondents were less likely to be employed (73%) than those in the asthma or control groups (both 80%; p = .023). Only 32% of the control group reported a household income ≤ $4,000/month compared with 41% of asthma and 38% of ASD families (p = .006). CONCLUSIONS: Utilizing a novel measure assessing family economic burden, we successfully collected survey responses from a large and diverse sample of families. Drawing upon the conceptual framework, survey measures, and self-report data described herein we will conduct future analyses to examine the economic burdens related to CHC and the incremental differences in these burdens between health groups. This information will help policy makers to design more equitable health and social policies that could reduce the burden on families.


Subject(s)
Autism Spectrum Disorder , Ethnicity , Child , Humans , Male , Female , Child, Preschool , Adolescent , Child Health , Quality of Life , Prospective Studies , Minority Groups
5.
J Autism Dev Disord ; 53(5): 1850-1861, 2023 May.
Article in English | MEDLINE | ID: mdl-35262827

ABSTRACT

Transitioning autistic youth from pediatric to adult healthcare requires coordination of multiple stakeholders, including youth, caregivers, and pediatric and adult care providers, whose interests at times overlap but often differ. To understand barriers and facilitators to inclusive transition experiences, we conducted thematic analysis of interviews with 39 stakeholders from the same large, integrated healthcare system. We identified three major themes: (1) Navigating the healthcare transition without guidance, (2) Health consequences of a passive healthcare transition, and (3) Strategies for inclusion and continuous engagement. Facilitators included gradual transition planning, a warm handoff between providers, and support of shared healthcare decision-making. Providers also sought clinical tools and logistical supports such as care coordinators and longer transition-specific visit types to enhance patient-centered care.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Transition to Adult Care , Humans , Adult , Child , Adolescent , Autistic Disorder/therapy , Delivery of Health Care , Qualitative Research
6.
Autism Res ; 16(3): 642-652, 2023 03.
Article in English | MEDLINE | ID: mdl-36546608

ABSTRACT

Parents of children with autism spectrum disorder (ASD) and other chronic health conditions often face exceptional caregiving demands that can lead to challenges related to maintaining and succeeding in employment. Detailed information on the specific ways in which these health conditions impact parent employment could aid in designing equitable, effective policies to support families. The r-Kids study used electronic health records to identify three groups of children: those with ASD, asthma, or neither condition (control), from several health care systems. We oversampled racial and ethnic minorities and matched the asthma and control groups to the age and sex distribution of the ASD group. Parents completed three online surveys over the course of a year to measure annual employment outcomes. Surveys included the Family Economic Impact Inventory (measuring employment impacts) and measures of quality of life and symptom severity. All materials were provided in English and Spanish. The study enrolled 1461 families (564 ASD, 468 asthma, 429 control). Youth were 3-16.5 years old and predominantly male (79%). The sample was diverse (43% non-Hispanic White; 35% non-Hispanic Asian, Black, Native Hawaiian, or Other; and 21% Hispanic ethnicity). Parents of children with ASD were significantly less likely to be employed than parents of youth with asthma and control combined (OR: 14.2, p < 0.001), and were more likely to have other difficulties with employment and productivity while at work. Public and employer policies to help mitigate these impacts could aid families in managing care for youth with ASD.


Subject(s)
Asthma , Autism Spectrum Disorder , Child , Adolescent , Humans , Male , Child, Preschool , Female , Autism Spectrum Disorder/diagnosis , Quality of Life , Parents , Employment
7.
Cureus ; 15(12): e51060, 2023 Dec.
Article in English | MEDLINE | ID: mdl-38269212

ABSTRACT

Little is currently known about the relationship between gender diversity and neurodiversity, although a growing body of researchers and clinicians are searching for more information to better serve this population. Gender-diverse individuals are three to six times more likely than cisgender individuals to identify as autistic or to report possible undiagnosed autism or autistic traits. Many gender-diverse individuals experience a shortage of gender-affirming medical care and are disproportionately impacted by barriers to mental health services. Similarly, autistic individuals report that the most common barrier to care is a lack of knowledgeable providers and/or resistance from providers to tailor care toward their specific needs. Two key areas in need of further research are 1) clinical approaches to gender-affirming medical and mental health care for neurodivergent patients and 2) the prevention and treatment of suicidality in gender-diverse neurodivergent individuals. Increasing collaborations amongst gender-diverse neurodivergent individuals, researchers, and clinicians are needed in order to further research and clinical practice to most directly and effectively improve physical and mental health care for the gender-diverse neurodivergent patient population.

9.
Pediatrics ; 149(Suppl 4)2022 04 01.
Article in English | MEDLINE | ID: mdl-35363290

ABSTRACT

OBJECTIVES: In the United States, autistic individuals experience disproportionate physical and mental health challenges relative to non-autistic individuals, including higher rates of co-occurring and chronic conditions and lower physical, social, and psychological health-related quality of life. The Autism Intervention Research Network on Physical Health (AIR-P) is an interdisciplinary, multicenter research network for scientific collaboration and infrastructure that aims to increase the life expectancy and quality of life for autistic individuals, with a focus on underserved or vulnerable populations. The current paper describes the development of the AIR-P Research Agenda. METHODS: Development of the research agenda involved an iterative and collaborative process between the AIR-P Advisory Board, Steering Committee, and Autistic Researcher Review Board. The methodology consisted of 3 phases: (1) ideation and design, (2) literature review and synthesis; and (3) network engagement. RESULTS: Six core research priorities related to the health of autistic individuals were identified: (1) primary care services and quality, (2) community-based lifestyle interventions, (3) health systems and services, (4) gender, sexuality, and reproductive health, (5) neurology, and (6) genetics. Specific topics within each of these priorities were identified. Four cross-cutting research priorities were also identified: (1) neurodiversity-oriented care, (2) facilitating developmental transitions, (3) methodologically rigorous intervention studies, and (4) addressing health disparities. CONCLUSIONS: The AIR-P Research Agenda represents an important step forward for enacting large-scale health-promotion efforts for autistic individuals across the lifespan. This agenda will catalyze autism research in historically underrepresented topic areas while adopting a neurodiversity-oriented approach to health-promotion.


Subject(s)
Autistic Disorder , Autistic Disorder/psychology , Autistic Disorder/therapy , Chronic Disease , Humans , Quality of Life , United States
11.
Autism Adulthood ; 4(4): 290-305, 2022 Dec 01.
Article in English | MEDLINE | ID: mdl-36601333

ABSTRACT

Background: Racial/ethnic disparities in access to diagnostic services are pervasive for autistic children. However, a few studies have examined racial/ethnic health disparities among autistic adults, who commonly experience higher rates of health conditions than non-autistic adults. We aimed at examining the intersection of autism and race/ethnicity in association with psychiatric and medical diagnoses. Methods: The study population included adult members of Kaiser Permanente Northern California enrolled from 2008 to 2012. We ascertained 1507 adults who had an autism diagnosis documented in their electronic medical records. We sampled a matched control group of adults without an autism diagnosis (N = 15,070) at a 10:1 ratio. Our sample was 46% White, 17% Hispanic, 16% Asian, 7% Black, and 14% other race/ethnicity. We compared health diagnoses (a) between autistic and non-autistic adults within strata of race/ethnicity and (b) across race/ethnicity within strata of autistic and non-autistic adults. Lastly, we examined the interaction between autism and race/ethnicity on both multiplicative and additive scales. Results: Autistic adults were more likely to be diagnosed with most medical and psychiatric conditions compared with their non-autistic counterparts of the same race/ethnicity. Among autistic adults, Black, Hispanic, and Asian adults were less likely to be diagnosed with psychiatric conditions and Black and Hispanic autistic adults were more likely to be diagnosed with obesity than their White counterparts. In interaction models, we found that adults who were Black and autistic were disproportionately less likely to be diagnosed with psychiatric conditions and autoimmune disease and more likely to be diagnosed with hypertension than expected. Conclusion: Health vulnerabilities may be compounded at the intersection of autism and race/ethnicity. Future research should continue to apply an intersectional lens toward understanding and addressing these disparities. Our findings likely underestimate the health disparities that exist in uninsured autistic adults and those living in other parts of the United States.


Why is this an important issue?: Very few studies have looked at how the combination of a person's autistic and racial/ethnic identities affects their health in adulthood. Dual experiences of ableism and structural racism may have a larger negative effect on the health of autistic people of color than either one experience alone. It is important to identify potential health disparities so that they can be addressed. What is the purpose of this study?: We wanted to understand whether autistic adults of color were more likely to be diagnosed with medical and psychiatric conditions than non-autistic and/or White peers. What did the researchers do?: We studied a diverse group of 1507 autistic adults and 15,070 non-autistic adults who all received health care from the same large, health plan in California. We examined electronic health records to determine whether diagnoses of health conditions differed by autism status and race/ethnicity. We then looked at whether autistic people of color were disproportionately diagnosed with these conditions compared with other groups. What were the results of the study?: Within every racial/ethnic group, autistic adults were more likely than non-autistic adults to be diagnosed with most medical and psychiatric conditions. Among the autistic group, Black, Hispanic, and Asian adults were less likely to be diagnosed with psychiatric conditions compared with White adults. We saw similar differences in psychiatric diagnoses by race/ethnicity among non-autistic adults. Further, the diagnostic patterns among adults who were autistic and Black suggested that this group may experience unique difficulties receiving mental health and autoimmune diagnoses. They also may be at a higher risk of hypertension. What do these findings add to what was already known?: Previous studies have found racial/ethnic disparities in both mental health and access to health care among autistic children. This study suggests that racial/ethnic disparities, especially in mental health care, may also exist among autistic adults. What are potential weaknesses in the study?: As a broad social label, race/ethnicity does not tell us much about people's lived experiences. Future studies should replace race/ethnicity with more useful measures of our social environment, including economic opportunity and experiences of structural racism. In addition, health records may imperfectly represent the actual occurrence of health conditions. For example, we cannot tell from this study whether autistic people of color actually experience fewer psychiatric problems, are less likely to visit the doctor, or are more likely to have their problems missed by doctors. Lastly, because our findings are from an insured population, we have likely underestimated the health disparities that exist among autistic adults who do not have consistent insurance coverage or health care access. How will these findings help autistic adults now or in the future?: We hope this study highlights the need for greater attention to the unique health risks at the intersection of autism and race/ethnicity in adults. Through more research and advocacy, we can increase awareness and understanding of these potential health disparities. This will lead to changes that promote more equal access to health care and greater well-being among autistic people of color.

12.
Autism ; 25(3): 731-743, 2021 04.
Article in English | MEDLINE | ID: mdl-32551940

ABSTRACT

LAY ABSTRACT: The transition from pediatric to adult care is a critical inflection point for the long-term health of youth with autism spectrum disorders and other special health care needs. However, for many patients, their caregivers, and providers, the transition lacks coordination. This survey study demonstrates that pediatric and adult providers struggle to implement many components of transition best practices for youth with autism and other chronic conditions, highlighting the urgent need for enhanced medical coordination and additional transition training and resources.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Transition to Adult Care , Adolescent , Adult , Autism Spectrum Disorder/therapy , Child , Delivery of Health Care , Humans , Surveys and Questionnaires
13.
Autism ; 25(3): 705-718, 2021 04.
Article in English | MEDLINE | ID: mdl-32583679

ABSTRACT

LAY ABSTRACT: Youth with autism spectrum disorder often have complex medical needs. Disruptions of healthcare during the transition from pediatric to adult healthcare may put youth with autism spectrum disorder at higher risk of medical emergencies and high medical costs. To understand healthcare utilization during the transition years, we conducted a study among transition-age youth (14-25 years old) receiving healthcare at Kaiser Permanente Northern California during 2014-2015. We examined differences in healthcare utilization and costs among youth with autism spectrum disorder (n = 4123), attention deficit and hyperactivity disorder (n = 20,6015), diabetes mellitus (n = 2156), and general population controls (n = 20,615). Analyses were also stratified by age and sex. Youth with autism spectrum disorder had the highest utilization of outpatient primary care, mental health, and psychotropic medications and the lowest utilization of obstetrics/gynecology and urgent care. Costs for youth with autism spectrum disorder were higher than those for attention deficit and hyperactivity disorder and general population peers and lower than for diabetes mellitus. Healthcare utilization patterns varied by age. Transition-age youth with autism spectrum disorder generally used healthcare at higher rates relative to attention deficit and hyperactivity disorder and general population peers but at similar or lower rates than diabetes mellitus peers, indicating this group's complex combination of psychiatric and medical healthcare needs. The relatively high utilization of psychiatric services and low utilization of women's health services in transition-age youth with autism spectrum disorder may have implications for long-term health and warrants additional research.


Subject(s)
Attention Deficit Disorder with Hyperactivity , Autism Spectrum Disorder , Adolescent , Adult , Attention Deficit Disorder with Hyperactivity/therapy , Autism Spectrum Disorder/drug therapy , Child , Delivery of Health Care , Female , Humans , Primary Health Care , Psychotropic Drugs/therapeutic use
14.
Public Health Genomics ; 23(3-4): 122-132, 2020.
Article in English | MEDLINE | ID: mdl-32698180

ABSTRACT

INTRODUCTION: Biospecimens are tools that have the potential to improve early identification and treatment for autism spectrum disorders (ASD) and bipolar disorders (BPD). Unfortunately, most biobanks lack racial/ethnic diversity. One challenge to including a diverse sample of youth is recruiting and engaging families. OBJECTIVE: We sought to better understand facilitators and barriers to participation in biospecimen research among a diverse group of parents of youth with ASD and BPD. METHODS: The current study involved 3 Mental Health Research Network sites. At each site, parents participated in an interview that explored attitudes and beliefs about genetic research. Interviews were audio-recorded, and audio files were transcribed and coded using content analysis. RESULTS: A total of 58 interviews were conducted. Four challenges emerged: (1) contacting and engaging potential research participants, (2) motivating potential participants to read recruitment and consent materials, (3) motivating participation in research, in general, and (4) motivating participation in research involving biospecimen donation, specifically. CONCLUSIONS: Participants were eager to participate as long as the research process involved trust, clarity, and flexibility. Future research involving youth with mental health conditions would benefit from implementing multimodal strategies for recruitment and data collection and sharing knowledge gained by the research with study participants.


Subject(s)
Autism Spectrum Disorder , Bipolar Disorder , Genetic Research/ethics , Patient Participation , Patient Selection/ethics , Autism Spectrum Disorder/genetics , Autism Spectrum Disorder/psychology , Biological Specimen Banks , Bipolar Disorder/genetics , Bipolar Disorder/psychology , Child , Female , Humans , Male , Patient Participation/methods , Patient Participation/psychology
15.
Autism Adulthood ; 1(1): 27-36, 2019 Mar 01.
Article in English | MEDLINE | ID: mdl-36600693

ABSTRACT

Objectives: To compare health care utilization patterns and cost among insured adults with autism spectrum disorder (ASD), adults with attention-deficit and hyperactivity disorder (ADHD), and adults with neither condition (general population [GP] controls). Method: We conducted a case-control study among adults (≥18 years) who were members of Kaiser Permanente Northern California (KPNC) for at least 9 months each year from 2008 to 2012. Cases (N = 1507) were adults with an ASD diagnosis (ICD-9-CM 299.0-299.8) recorded in the electronic medical record on at least two separate occasions by December 31, 2012. Two control groups, adults with ADHD (N = 9042) defined by ICD-9-CM code 314 and GP (N = 15,070), were randomly selected and frequency matched to cases on gender and age. Health care utilization and cost data were obtained from KPNC databases for the year 2012. Results: Compared with adults with ADHD, adults with ASD had significantly higher utilization of outpatient visits for primary care (74.2% vs. 66.6%), mental health (43.3% vs. 33.2%), and laboratory services (60.9% vs. 54.4%). Hospitalizations for ambulatory care sensitive diagnoses (5.4% vs. 2.3%) were less frequent overall but more common among adults with ASD than with ADHD. Group differences were larger comparing adults with ASD with GP controls. Gynecology visits and screening for cervical cancer were significantly less common among women with ASD than among women with ADHD (35% vs. 50%) or GP (35% vs. 49%). Total annual mean healthcare costs for adults with ASD were 20% higher than costs for adults with ADHD and double costs for GP. Conclusion: Adults with ASD had significantly higher rates of utilization across most health care service areas compared with adults with ADHD or GP; however, women with ASD were significantly less likely to have gynecology visits and have screening for cervical cancer. Lay Summary: We conducted a study among adults (≥18 years) who were members of Kaiser Permanente Northern California (KPNC) from 2008 to 2012. We compared how often people attended different types of health care and costs of health care among adults with autism spectrum disorder (ASD), adults with attention-deficit and hyperactivity disorder (ADHD), and adults with neither condition (general population [GP] controls). The study included 1507 adults with ASD, 9042 with ADHD but not ASD, and 15,070 GP controls with no ASD or ADHD. Health care and cost data were obtained from KPNC databases for the year 2012. The study found that adults with ASD used more outpatient visits for primary care, mental health, and laboratory services than adults with ADHD. Gynecology visits and screening for cervical cancer were less common among women with ASD than among women with ADHD or GP. Health care costs for adults with ASD were higher than costs for adults with ADHD and costs for GP. In conclusion, adults with ASD had higher rates of use of most health care service areas than adults with ADHD or GP; however, women with ASD were less likely to have gynecology visits and have screening for cervical cancer.

16.
Pediatrics ; 141(Suppl 4): S335-S345, 2018 04.
Article in English | MEDLINE | ID: mdl-29610415

ABSTRACT

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.


Subject(s)
Autism Spectrum Disorder/epidemiology , Autism Spectrum Disorder/therapy , Delivery of Health Care, Integrated/trends , Mental Disorders/epidemiology , Mental Disorders/therapy , Transition to Adult Care/trends , Adolescent , Adult , Attention Deficit Disorder with Hyperactivity/diagnosis , Attention Deficit Disorder with Hyperactivity/epidemiology , Attention Deficit Disorder with Hyperactivity/therapy , Autism Spectrum Disorder/diagnosis , California/epidemiology , Delivery of Health Care, Integrated/methods , Female , Gastrointestinal Diseases/diagnosis , Gastrointestinal Diseases/epidemiology , Gastrointestinal Diseases/therapy , Humans , Intellectual Disability/diagnosis , Intellectual Disability/epidemiology , Intellectual Disability/therapy , Male , Mental Disorders/diagnosis , Nervous System Diseases/diagnosis , Nervous System Diseases/epidemiology , Nervous System Diseases/therapy , Young Adult
17.
J Autism Dev Disord ; 47(11): 3347-3357, 2017 Nov.
Article in English | MEDLINE | ID: mdl-28748332

ABSTRACT

This study investigates demographic and clinical factors associated with initiation, continuation, and adherence to behavioral health treatment (BHT) among children with autism spectrum disorder. Among 293 insured children referred for applied behavior analysis (ABA) based BHT, 23% never initiated treatment. Among those initiating treatment, 31% discontinued treatment within 1 year of treatment initiation, and only 15% received 80% or more of recommended treatment hours. Younger age at referral to treatment, private health insurance, and receiving more than 10 h/week of BHT were associated with treatment engagement. Co-occurring psychiatric and medical conditions were related to treatment discontinuation among children 5 years or older. These findings suggest specific subgroups that may benefit from additional support with engaging in recommended behavioral health treatment.


Subject(s)
Autism Spectrum Disorder/therapy , Behavior Therapy/statistics & numerical data , Adolescent , Autism Spectrum Disorder/epidemiology , Child , Child, Preschool , Female , Humans , Male , Treatment Adherence and Compliance
18.
Perm J ; 21: 16-009, 2017.
Article in English | MEDLINE | ID: mdl-28488981

ABSTRACT

INTRODUCTION: Autism spectrum disorders (ASD) are lifelong neurodevelopmental disorders, and little is known about how parents address the health and psychosocial consequences of ASD. Few studies have examined use of various treatments and services in a large, diverse sample of children with ASD and their families. OBJECTIVE: This paper presents methods to create an autism research resource across multiple large health delivery systems and describes services and treatments used by children with ASD and their families. METHODS: Four study sites conducted a Web survey of parents of children and adolescents with ASD who were members of Kaiser Permanente. We tabulated data distributions of survey responses and calculated χ2 statistics for differences between responders and nonresponders. RESULTS: The children of the 1155 respondents were racially and ethnically diverse (55% white, 6% black, 5% Asian, 9% multiracial, 24% Hispanic) and representative of the total population invited to participate with respect to child sex (83% male), child age (57% < 10 years), and ASD diagnosis (64% autistic disorder). The most frequently used services and treatments were Individualized Education Programs (85%), family physician visits (78%), and occupational and speech therapy (55% and 60%, respectively). Home-based programs frequently included implementation of social skills training (44%) and behavior management (42%). Prescription medication use was high (48%). Caregivers reported disruption of personal and family routines because of problem behaviors. CONCLUSION: These survey data help to elucidate parents' experiences with health services for their children with ASD and serve as a potential resource for future research.


Subject(s)
Autism Spectrum Disorder/therapy , Health Care Surveys/statistics & numerical data , Mental Health Services/statistics & numerical data , Parents , Adolescent , Child , Child, Preschool , Female , Health Care Surveys/methods , Humans , Infant , Male
19.
J Autism Dev Disord ; 46(3): 910-20, 2016 Mar.
Article in English | MEDLINE | ID: mdl-26547921

ABSTRACT

Using data from multiple health systems (2009-2010) and the largest sample to date, this study compares health services use among youth with and without an autism spectrum disorder (ASD)-including preventive services not previously studied. To examine these differences, we estimated logistic and count data models, controlling for demographic characteristics, comorbid physical health, and mental health conditions. Results indicated that youth with an ASD had greater health care use in many categories, but were less likely to receive important preventive services including flu shots and other vaccinations. An improved understanding of the overall patterns of health care use among this population could enable health systems to facilitate the receipt of appropriate and effective health care.


Subject(s)
Autism Spectrum Disorder/psychology , Mental Health Services/statistics & numerical data , Patient Acceptance of Health Care/psychology , Patient Acceptance of Health Care/statistics & numerical data , Preventive Health Services/statistics & numerical data , Primary Health Care/statistics & numerical data , Adolescent , Age Factors , Case-Control Studies , Child , Child, Preschool , Emergency Medical Services/statistics & numerical data , Female , Humans , Male , United States
20.
Res Autism Spectr Disord ; 17: 40-51, 2015 Sep 01.
Article in English | MEDLINE | ID: mdl-26366192

ABSTRACT

PURPOSE: The purpose of the present study was to examine the prevalence and predictors of complementary and alternative medicine (CAM) use as well as parental perceptions of CAM efficacy in a large, geographically diverse sample of children with Autism Spectrum Disorders (ASD). METHODOLOGY: Data were obtained from a web-based survey administered to parents of children with ASD at four sites participating in the Mental Health Research Network (MHRN). The web survey obtained information about services and treatments received by children with ASD as well as the caregivers' experiences with having a child with ASD. RESULTS: Approximately 88% of the sample had either used CAM in the past or had recently used some type of CAM. The following characteristics were associated with CAM use: greater parental education, younger child age, a mix of regular and special classroom settings and prescription drug use in the past three months. CONCLUSIONS: The use of CAM was very prevalent in this large, geographically diverse sample of children with ASD. It is critical that providers be prepared to discuss the advantages and potential side effects with families to help them make well-informed health care decisions and prevent possible CAM-drug interactions.

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