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1.
Qual Life Res ; 2024 Jul 30.
Artigo em Inglês | MEDLINE | ID: mdl-39080090

RESUMO

PURPOSE: Quality of life (QoL) is identified as a clinical and research priority by the autistic community. Researchers have the responsibility to ensure that instruments used to measure QoL do so reliably and accurately among autistic participants. METHODS: Our study evaluated measurement invariance of Emotional Distress (Depression, Anxiety, Anger, Psychological Stress) and Subjective Well-Being (Life Satisfaction, Positive Affect, and Meaning & Purpose) scales of the Patient-Reported Outcomes Measurement Information System (PROMIS) among groups of autistic (N=140, n per scale=132-140) and general population (N=1,224, n per scale=406-411) teenagers (14-17 years). These scales were included in the PROMIS Autism Battery-Lifespan, which uses PROMIS scales to measure QoL domains most relevant for autistic people. RESULTS: Multi-group confirmatory factor analyses using permutation tests demonstrated that Depression and Positive Affect scales exhibited scalar invariance between groups, indicating that scores can be meaningfully compared across autistic and general population teens. Anger and Psychological Stress scales demonstrated metric invariance between groups, indicating that these scales measure the same latent trait in both groups, but group comparisons are not supported. CONCLUSION: We provide guidance as to how these scales can be used in psychometrically supported ways to capture constructs relevant for understanding QoL among autistic teens.


Quality of life is an important outcome for autistic people and their families. However, many quality of life scales have not been tested to make sure they accurately measure quality of life among autistic people. It is important to make sure that quality of life measures works similarly among the autistic population. The goal of our study is to test whether scales on a common quality of life measure ­ the Patient-Reported Outcomes Measurement Information System (PROMIS) ­ measures quality of life in the same way between autistic and general population adolescents. We found that some of the PROMIS scales worked the same way for autistic and general population adolescents and others did not. These results help researchers confidently use the PROMIS scales to measure different aspects of quality of life among autistic youth.

2.
Am J Occup Ther ; 77(2)2023 Mar 01.
Artigo em Inglês | MEDLINE | ID: mdl-37040101

RESUMO

IMPORTANCE: Some autistic adults experience depression and anxiety related to their social relationships. There is a need for evidence-based occupational therapy interventions that decrease depression and anxiety and improve the health of social relationships for autistic adults. OBJECTIVE: To determine the feasibility and preliminary effectiveness of the Healthy Relationships on the Autism Spectrum (HEARTS) intervention, a six-session, group-based psychoeducational intervention for the improvement of relationship health. DESIGN: One-group pretest-posttest design with a 3-mo follow-up after baseline. SETTING: United States; online intervention through community organization. PARTICIPANTS: Fifty-five adults, ages 20 to 43 yr, with a professional or self-diagnosis of autism and the capacity to independently participate in an online, group-based, participatory class. INTERVENTION: Participants received 6 90-min weekly sessions that addressed healthy relationship topics, including recognizing abuse, meeting people, maintaining relationships, setting interpersonal boundaries, neurohealth for relationships, and ending relationships. A psychoeducational approach that provided education and involved guided discovery and strategy acquisition was used. OUTCOMES AND MEASURES: All measures were self-administered through an online survey. Depression and anxiety were assessed using instruments from the Patient-Reported Outcomes Measurement Information System. RESULTS: Fifty-five participants completed the intervention. Postintervention scores revealed statistically significant improvements in depression and anxiety. CONCLUSIONS AND RELEVANCE: HEARTS is a promising intervention for improving depression and anxiety among autistic adults and should be investigated further. What This Article Adds: HEARTS offers a potentially effective, nonpharmacological, psychoeducational group-based intervention option to promote healthy relationships for autistic adults. Positionality Statement: This article uses identity-first language (autistic person) in accordance with the preference of autistic self-advocates (Autistic Self Advocacy Network, 2020; Kenny et al., 2016; Lord et al., 2022).


Assuntos
Transtorno Autístico , Terapia Cognitivo-Comportamental , Humanos , Adulto , Estados Unidos , Adulto Jovem , Depressão , Ansiedade , Transtornos de Ansiedade
3.
J Child Sex Abus ; 24(6): 698-715, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-26340075

RESUMO

In recent years, there has been accumulating evidence that sexual abuse committed by females is not rare and can be just as traumatic as sexual abuse committed by males. Despite the increased recognition given to sex offending by adult women, however, very little attention has been given to sex offenses committed by juvenile females. There has further been very little published material that has focused specifically on intervening with female children and adolescents before they offend. In an attempt to fill this gap, this article describes common characteristics of juvenile female sex offenders, ways in which juvenile female sex offenders are similar to and different from juvenile male sex offenders, and the limitations that exist related to our knowledge about these offenders. Based on this information, suggestions are given for possible ways to intervene in the lives of at-risk female youth before they offend.


Assuntos
Comportamento do Adolescente/psicologia , Vítimas de Crime/psicologia , Comportamento Perigoso , Delinquência Juvenil/psicologia , Prevenção Primária/métodos , Delitos Sexuais/psicologia , Adolescente , Vítimas de Crime/estatística & dados numéricos , Literatura Erótica , Feminino , Humanos , Delinquência Juvenil/estatística & dados numéricos , Delitos Sexuais/estatística & dados numéricos
4.
J Interpers Violence ; : 8862605241275997, 2024 Sep 15.
Artigo em Inglês | MEDLINE | ID: mdl-39279330

RESUMO

Dating violence victimization is a pervasive public health problem that affects individuals of all age groups, but it holds particular significance during adolescence due to the potential long-term consequences on an individual's physical and psychological well-being, and potential influence on the health of adult relationships. Although there is now ample research on the topic of adolescent dating violence prevalence, risk factors, and consequences, to our knowledge, only four studies have assessed dating violence victimization among autistic youth. The current study was designed to investigate the prevalence of, and risk markers for, dating violence victimization among autistic youth. Specifically, the study had two aims: (a) to estimate the prevalence of dating violence victimization among autistic youth in a U.S.-based sample and (b) to identify correlates of dating violence for autistic youth, which include sociodemographic, mental health, and alcohol-related variables. We found that among participants who were in a romantic relationship in the past year, autistic participants were not any less likely to experience dating violence victimization compared to their non-autistic counterparts (40.7% for autistic youth vs. 38.0% for non-autistic youth). In addition, findings from the current study demonstrate the significant relationships between dating violence victimization and consequences of alcohol use, loneliness, and anxiety among autistic youth. Existing studies, in addition to the results of the current study, suggest the need for tailored dating violence prevention, support, and intervention to support the overall well-being of autistic youth.

5.
Autism ; 28(3): 770-779, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37530121

RESUMO

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.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Adulto , Humanos , Feminino , Adolescente , Masculino , Identidade de Gênero , Sexualidade , Políticas
7.
J Am Coll Health ; 71(9): 2786-2794, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-34813724

RESUMO

ObjectiveTo compare rates of aggression victimization for autistic vs. non-autistic U.S. college students. Participants: n = 1,411 autistic and n = 218,430 non-autistic students from 78 colleges. Methods: We used a three-way interaction term to examine moderation of the relationship between autism and sexual, physical and emotional aggression victimization by depression and sense of belonging. Results: Autistic students were nearly twice as likely as non-autistic students to report past-year emotional victimization (44% vs. 26%, p < 0.001), and more likely to report physical victimization (8.4% vs. 5.7%, p < 0.001). Autistic students who experienced sexual assault were 2.23 times more likely than non-autistic students to report it affected academic performance (80.4% vs. 36.0%, p < 0.001). At both low and high levels of depression, sense of belonging was protective against physical and sexual victimization for autistic students more than for non-autistic students. Conclusions: Institutions of higher education should prioritize preventing and responding to interpersonal aggression against autistic students.


Assuntos
Transtorno Autístico , Vítimas de Crime , Humanos , Estudantes/psicologia , Universidades , Comportamento Sexual , Vítimas de Crime/psicologia , Agressão/psicologia
8.
Autism ; 27(1): 213-225, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-35499489

RESUMO

LAY ABSTRACT: What is already known about the topic? Hazardous alcohol use is when a person's drinking puts them at increased risk for negative events (e.g. health problems or car crashes). Some studies show that autistic people may be at greater risk for hazardous alcohol use than non-autistic people, while other studies have found that hazardous alcohol use is less common among autistic people than non-autistic people. We need to learn why autistic underage youth choose to drink alcohol or not. The goal of this study was to learn from US autistic youth about their attitudes and behavior related to alcohol. Forty autistic youth aged 16-20 years old were interviewed.What this article adds? Youth described several reasons why they choose to drink alcohol, including feeling like non-autistic people are more accepting when drinking, that it puts them in a less irritable or bored mood, helps them cope with problems, and helps them fit in. Reasons for not drinking alcohol include worries about becoming addicted, medication interactions, not liking the taste, fear of experiencing hangover and other health problems, and concern about acting foolish when drunk.Implications for practice, research, or policy Results reveal that hazardous alcohol use in autistic adults could have its roots in underage experiences that give autistic youth temporary relief from social anxiety, feeling lonely, and challenges with sensory processing. Right now, there are no evidence-based alcohol prevention programs in the United States for autistic people. One or more such programs may be needed. The results from this study could be used to adapt existing programs for non-autistic youth to the unique needs and risk factors of autistic youth.


Assuntos
Comportamento do Adolescente , Transtorno do Espectro Autista , Transtorno Autístico , Humanos , Adolescente , Estados Unidos/epidemiologia , Adulto Jovem , Adulto , Consumo de Bebidas Alcoólicas/epidemiologia , Consumo de Bebidas Alcoólicas/efeitos adversos , Emoções
9.
Perspect Sex Reprod Health ; 55(1): 49-61, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-36751875

RESUMO

BACKGROUND: Sexual and reproductive health services promote the ability of people to have safe, satisfying, non-coercive sexual experiences and make informed decisions about pregnancy. Stakeholder input is needed to understand barriers or facilitators to service access for autistic people, who report unmet needs. METHODS: We recruited 18 autistic people, 15 parents, and 15 service providers in the United States to participate in an interview and two surveys. Using their input, we created a conceptual model of sexual and reproductive health service needs, access barriers, and facilitators. RESULTS: Stakeholders rated a variety of sexual and reproductive health services as important for autistic people, including those with intellectual disability or minimal verbal language. Stakeholders identified barriers to sexual and reproductive health service utilization including lack of service availability, lack of service providers with autism or neurodiversity training, lack of accurate information about autism and sexuality, verbal and communication differences that are not accommodated by service providers, and socio-cultural attitudes about sexuality. Stakeholders identified facilitators to service access including person-centered, trauma-informed care, service accommodations such as clear and detailed expectations, and long-enough appointments. We created a conceptual model based on the social ecological model of health to organize these utilization factors and support future research, provider, and policy action. Stakeholders provided feedback and responded favorably on the model's accuracy, utility for spurring research, practice, and policy improvements, and application to diverse groups of autistic people. CONCLUSIONS: The model shows the many feasible ways to support equitable access to services for autistic people.


Assuntos
Transtorno Autístico , Serviços de Saúde Reprodutiva , Gravidez , Feminino , Humanos , Estados Unidos , Adolescente , Transtorno Autístico/terapia , Comportamento Sexual , Pais , Comunicação , Saúde Reprodutiva
10.
J Autism Dev Disord ; 2023 Sep 26.
Artigo em Inglês | MEDLINE | ID: mdl-37751088

RESUMO

PURPOSE: We explored factors predicting repeated or hazardous alcohol use among autistic and non-autistic U.S. youth ages 16 to 20 years. METHODS: Autistic (n = 94) and non-autistic (n = 92) youth completed an online survey. By design, half of each group reported past-year alcohol use. We compared drinking patterns for autistic and non-autistic youth, and within each group between abstinent or infrequent drinkers (0-1 drinking episodes in past year) versus those who drank 2 + times in past year. RESULTS: Autistic (vs. non-autistic) youth who drank did so less frequently and consumed fewer drinks per occasion. However, 15% of autistic youth who drank in the past year reported heavy episodic drinking and 9.3% screened positive for AUDIT-C hazardous drinking. For autistic youth only, a diagnosis of depression, bullying or exclusion histories were positively associated with drinking 2 + times in the past year. Autistic youth who put more effort into masking autistic traits were less likely to report drinking 2 + times in the past year. As compared to non-autistic youth, autistic participants were less likely to drink for social reasons, to conform, or to enhance experiences, but drank to cope at similar rates. CONCLUSION: Repeated and hazardous underage alcohol occur among autistic youth. Targeted prevention programs designed to address the specific drinking profiles of autistic youth are needed.

11.
Cureus ; 15(8): e44388, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-37779815

RESUMO

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.

12.
J Strength Cond Res ; 26(5): 1423-30, 2012 May.
Artigo em Inglês | MEDLINE | ID: mdl-22395275

RESUMO

The purpose of this study was to examine the relationship of off-ice performance measures with on-ice turning, crossover, and forward skating performance in high school male hockey players. Thirty-eight players aged 15-18 (mean age ± SD: 16.4 ± 1.1 years; height: 177.9 ± 6.8 cm; weight: 72.5 ± 8.9 kg) participated in this study. On-ice tests included a forward sprint, short radius turns, and crossover turns. Off-ice tests included a 40-yd sprint, vertical jumps, horizontal jumps, and a dynamic balance test using a Y balance testing device. Five off-ice variables correlated with all on-ice performance measures. These variables included the 40-yd sprint, lateral bound right to left limb, double limb horizontal hop, balance on right in posterolateral direction, and composite balance performance on the right. Hierachical regression demonstrated that off-ice sprint time was most predictive of on-ice skating performance, accounting for 65.4% of the variability in forward skate time, 45.0% of the variability in left short radius time, 21.8% of the variance in right short radius time, 36.2% of the variance in left crossover time, and 30.8% of the variability in right crossover time. When using off-ice tests to evaluate hockey players, the 40-yd sprint is the best predictor of skating performance. Based on our regression equation, for every 1-second difference in the 40-yd sprint time, there will be approximately a 0.6-second difference in the 34.5-m on-ice sprint. The 40-yd sprint predicts forward skating performance and to a lesser degree; it also predicts crossover and tuning performance.


Assuntos
Desempenho Atlético/fisiologia , Hóquei/fisiologia , Destreza Motora , Adolescente , Exercício Físico , Análise Fatorial , Humanos , Masculino , Equilíbrio Postural , Valor Preditivo dos Testes , Análise de Regressão , Corrida/fisiologia , Patinação/fisiologia , Análise e Desempenho de Tarefas
13.
Autism ; 26(1): 160-168, 2022 01.
Artigo em Inglês | MEDLINE | ID: mdl-34120485

RESUMO

LAY ABSTRACT: What is already known about the topic? All people can benefit from education about how to have healthy friendships and dating relationships. But specific interventions on relationship skills-like respecting boundaries, identifying warning signs of abuse, or talking about sexual preferences-are too rare, particularly for autistic individuals. The goal of this study was to collect formative data from autistic emerging adults to help create a new, six-session workshop for autistic young adults to support healthy peer relationships. Twenty-five autistic youth aged 16-22 years old were interviewed.What this paper adds? The participants described a need for more and better information about how to support lasting friendships, deal with their anxiety about relationships, and know when friendships or dating relationships were reciprocal and rewarding versus unhealthy.Implications for practice, research, or policy. The results reveal a need for a new and effective intervention that supports healthy relationship skills for autistic people.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Adolescente , Adulto , Transtorno do Espectro Autista/terapia , Transtorno Autístico/terapia , Currículo , Amigos , Humanos , Grupo Associado , Adulto Jovem
14.
Pediatrics ; 149(Suppl 4)2022 04 01.
Artigo em Inglês | MEDLINE | ID: mdl-35363291

RESUMO

BACKGROUND: We provide an update on reproductive health education (RHE) and substance use prevention education (SUPE) participation for autistic youth compared with other youth with and without individualized education plans (IEPs) and 504 plans. The 800 000 autistic youth served by the US special education system need education to make informed decisions about reproductive health and substance use. METHODS: Data were from the National Longitudinal Transition Study-2012, a survey designed to yield nationally representative estimates of the experiences of US youth. Autistic youth (n = 390) who received RHE and SUPE were compared with youth with all other IEP classifications (n = 4420), with a 504 plan (n = 350), and with no IEP or 504 plan (n = 980). All youth were ≥14 years old and able to self-report on a survey. Bivariate and multivariate regression analyses were performed for each group to identify characteristics associated with RHE and SUPE receipt. RESULTS: Autistic youth reported a significantly lower rate of RHE (47.4%) and SUPE (49.6%) inclusion versus students with no IEP or 504 plan (59.2% and 57.4%, respectively). Autistic girls were more than twice as likely to report RHE receipt than autistic boys (55.1% vs 45.9%). For autistic youth, no markers for receipt of SUPE were identified. CONCLUSIONS: Autistic youth are underserved when it comes to school-based RHE and SUPE, potentially undermining self-determination and leading to poorer lifespan health trajectories. Research and policy advocacy are needed to ensure that these youth have access to RHE and SUPE.


Assuntos
Transtorno Autístico , Transtornos Relacionados ao Uso de Substâncias , Adolescente , Educação Inclusiva , Escolaridade , Feminino , Humanos , Masculino , Saúde Reprodutiva , Transtornos Relacionados ao Uso de Substâncias/epidemiologia
15.
Autism Res ; 15(12): 2336-2345, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-36259546

RESUMO

The objectives of this study were to (1) demonstrate the application of percentiles to advance the interpretation of patient-reported outcomes and (2) establish autism-specific percentiles for four Patient-Reported Outcomes Measurement Information System (PROMIS) measures. PROMIS measures were completed by parents of autistic children and adolescents ages 5-17 years as part of two studies (n = 939 parents in the first study and n = 406 parents in the second study). Data from the first study were used to develop autism-specific percentiles for PROMIS parent-proxy sleep disturbance, sleep-related impairment, fatigue, and anxiety. Previously established United States general population percentiles were applied to interpret PROMIS scores in both studies. Results of logistic regression models showed that parent-reported material hardship was associated with scoring in the moderate-severe range (defined as ≥75th percentile in the general population) on all four PROMIS measures (odds ratios 1.7-2.2). In the second study, the percentage of children with severe scores (defined as ≥95th percentile in the general population) was 30% for anxiety, 25% for sleep disturbance, and 17% for sleep-related impairment, indicating a high burden of these problems among autistic children. Few children had scores at or above the autism-specific 95th percentile on these measures (3%-4%), indicating that their scores were similar to other autistic children. The general population and condition-specific percentiles provide two complementary reference points to aid interpretation of PROMIS scores, including corresponding severity categories that are comparable across different PROMIS measures.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Transtornos do Sono-Vigília , Criança , Adolescente , Humanos , Estados Unidos , Pré-Escolar , Transtorno Autístico/complicações , Transtorno Autístico/diagnóstico , Inquéritos e Questionários , Qualidade de Vida , Medidas de Resultados Relatados pelo Paciente , Transtornos do Sono-Vigília/diagnóstico , Transtornos do Sono-Vigília/epidemiologia , Sistemas de Informação
16.
J Biomol Tech ; 33(1)2022 04 15.
Artigo em Inglês | MEDLINE | ID: mdl-35837003

RESUMO

Cells isolated using electrostatic cell sorters are subsequently evaluated in a variety of in vitro and in vivo applications. Thus, manipulations to the cells during the pre- and post-sort processing as well as when the cells are being analyzed by and passing through the sorter fluidics has the potential to affect the experimental results. There are many variables to consider when seeking to preserve cellular integrity and function during the cell-sorting process. A previous study by the Association of Biomolecular Resource Facilities Flow Cytometry Research Group (FCRG) investigated downstream effects on different cell types as a function of sorting variables such as pressure, nozzle size, and temperature. This multisite study revealed site-to-site variability based on differential gene expression when the same cell type and sort conditions were used. These results indicated the possibility that environmental factors such as the presence of contaminants in the sorter fluidics could exhibit effects on downstream molecular assays (ie, endotoxins or RNases). In the study described here, the FCRG sought to better understand how sorters are maintained and evaluated for contaminants such as bacteria, endotoxin, and RNases. In addition, the efficacy of an endotoxin decontamination method was evaluated. The results demonstrated that the majority of sorters in shared resource laboratories are free of RNase activity and bacteria; however, many are contaminated with endotoxin. The efficacy of a hydrogen peroxide cleaning procedure was tested and found to exhibit only a short-term effectiveness in eliminating endotoxin contamination.


Assuntos
Infertilidade , Laboratórios , Separação Celular/métodos , Endotoxinas/genética , Citometria de Fluxo/métodos , Humanos
17.
Autism ; 26(3): 690-702, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-35000417

RESUMO

LAY ABSTRACT: The Healthy Relationships on the Autism Spectrum class is unique because autistic people helped to develop it and co-taught it. It is an online, six-session class. The class was piloted in 2020-2021 with 55 autistic people who were ages 18-44 years old. This feasibility study found that most people who took the class liked it. Surveys filled out by the students before and after the class showed that they became less sensitive to rejection, used more positive thinking skills, and were more interested in being social. However, the class may not have made them feel less lonely. The team that invented the class is using the feedback to improve it. The class holds promise for improving the quality of friendships and dating relationships for autistic adults and should be tested further.


Assuntos
Transtorno do Espectro Autista , Transtorno Autístico , Adolescente , Adulto , Estudos de Viabilidade , Amigos , Humanos , Inquéritos e Questionários , Adulto Jovem
18.
Pediatrics ; 149(Suppl 4)2022 04 01.
Artigo em Inglês | MEDLINE | ID: mdl-35363290

RESUMO

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.


Assuntos
Transtorno Autístico , Transtorno Autístico/psicologia , Transtorno Autístico/terapia , Doença Crônica , Humanos , Qualidade de Vida , Estados Unidos
19.
Autism Adulthood ; 3(3): 238-246, 2021 Sep 01.
Artigo em Inglês | MEDLINE | ID: mdl-36605373

RESUMO

Background: Research about the experience of sexuality and intimacy for autistic people has largely excluded the potential influences of autistic sensory features, which are highly common. The aim of this study was to explore how autistic sensory features influence autistic people's experiences of sexuality and relationships, including the impact of low and high neurological threshold sensory patterns and regarding specific sensory modalities. Methods: Utilizing a qualitative approach, we explored autistic people's perspectives about the influences of sensory features on their experiences of sexuality and relationships through existing publicly available narratives (5 books and 13 online forums containing messages from 72 unique usernames) and responses to an open-ended survey question (N = 49). We used deductive coding based on Dunn's model of sensory processing, as well as inductive coding to identify additional themes about autistic sensory features and sexuality. Results: Our findings indicated that sexual and relationship experiences were related to both sensory sensitivity and sensation seeking (i.e., low and high threshold sensory patterns) across several sensory modalities, including touch, sight, sound, and smell. Sensory features influenced autistic people's sexual and relationship experiences in both positive and negative ways. Examined narratives revealed adaptations and strategies used by autistic people to enhance or enable engagement in sexual activity as well as implications for their sexual identity. Conclusions: Sensory features and their impact on the sexuality and relationship experiences of autistic people should be considered in clinical practice and educational programming. More research is needed to further understand the impact of autistic sensory features on experiences of sexuality and relationships, and to develop effective strategies to promote safe and satisfying engagement, when desired. Lay summary: Why was this study done?: Autistic people often respond to sensations differently than other people, including being more sensitive to sensations and/or wanting more intense sensations (called "autistic sensory features" in this study). Many aspects of sexuality and relationships involve sensory input. However, we do not know much about how autistic sensory features influence sexuality and relationships for autistic people.What was the purpose of this study?: The purpose of this study was to explore how autistic sensory features influence autistic people's experiences of sexuality and relationships.What did the researchers do?: For this study, we used two different sources of data. The first was existing publicly available things written by autistic people, including books and posts on online forums. The second was answers provided on a survey question asking about autistic sensory features and sexuality. Overall, we looked at things written by over 120 autistic people. We reviewed all the information to explore what kinds of sensory responses (e.g., sensitivities and sensation seeking) and sensory modalities (e.g., touches, sights, sounds, and smells) they wrote about. We also looked more generally to see how autistic people described the ways that autistic sensory features influenced their sexuality and relationship experiences.What were the results of the study?: Our findings show that in the information we accessed, autistic people did write about how sensory features influence their sexual and relationship experiences. Some people who have sensory sensitivities described confusion, distress, and frustration with sexual experiences. Despite wanting to participate, people with sensitivities described negative reactions to many of the sights, sounds, smells, and textures that were involved in dating and sexual activities. Other people indicated that they avoided sexual activity because of their sensory features. However, we also found that some autistic people seek out more intense sensations in their sexual activities, and others that enjoy intimacy that promotes calming and self-regulation. People wrote about strategies they use in response to their autistic sensory features, such as communication with partners and the use of substances to dull sensations.What do these findings add to what was already known?: There has not been much published research on this topic, so this study is a starting place. In books, as well as in online discussion boards, autistic people have been discussing the importance of sensory features to their sexuality and relationships. We accessed that information, and used theory and clinical experience to analyze their writings and help identify what other research is needed.What are potential weaknesses in the study?: We used text already written by autistic people and responses on one survey question for this study. Therefore, we may not have gained a complete understanding of the ways that autistic sensory features influence sexuality and relationship experiences.How will these findings help autistic adults now or in the future?: This study contributes to greater understanding of how autistic traits affect sexuality and relationships for autistic people. That information can be used to develop effective education and resources for autistic people, families, and service providers.

20.
Disabil Rehabil ; 43(20): 2829-2837, 2021 10.
Artigo em Inglês | MEDLINE | ID: mdl-31990211

RESUMO

PURPOSE: Expectations held by parents of youth with disabilities contribute to decision making and planning for adulthood. This study investigated longitudinal stability of parent expectations about the transition to adulthood for youth with disabilities (i.e., likelihood of obtaining postsecondary education, living independently, becoming financially self-sufficient) and how the stability of parent expectations was related to adult outcomes. MATERIALS AND METHODS: Participants were parents of 3640 youth who participated in the National Longitudinal Transition Study-2 (NLTS2) waves 1 and 2 and had available data related to parent expectations. RESULTS: Parent expectations were moderately correlated across waves; however, over one-third of parents changed their expectations across waves, including directional shifts (e.g., changing from thinking they probably will achieve the outcome to probably will not achieve it). Directional shifts in parent expectations between waves 1 and 2 significantly predicted young adult outcomes at wave 5. The children of parents who demonstrated uncertainty, as indicated by directional expectation shifts, were less likely live independently as young adults. Family involvement in the transition process is critical and should continue to be advocated for in both policy and practice. Improved supports may be warranted for families who experience uncertainty.Implications for rehabilitationPractitioners should recognize that parents of youth with disabilities have expectations for their child's transition to adulthood that may change over time and are influenced by factors such as youth age, disability classification, gender, and socioeconomic status.The ways parents' expectations change over time may have lasting implications for their child; specifically, we identified that youth of parents who change their expectations negatively (by shifting to expect less independence) are less likely to attain certain adult milestones.Parents experiencing uncertainty about their youths' postsecondary potential may require additional support and resources to understand their child's strengths and challenges, consider available services, and ultimately to promote more independent outcomes for the youth.


Assuntos
Pessoas com Deficiência , Motivação , Adolescente , Adulto , Criança , Família , Humanos , Estudos Longitudinais , Pais , Adulto Jovem
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