Opening the door to university health research: recommendations for increasing accessibility for individuals with intellectual disability.

BACKGROUND: Advances in health equity rely on representation of diverse groups in population health research samples. Despite progress in the diversification of research samples, continued expansion to include systematically excluded groups is needed to address health inequities. One such group that is infrequently represented in population health research are adults with intellectual disability. Individuals with intellectual disability experience pervasive health disparities. Representation in population health research is crucial to determine the root causes of inequity, understand the health of diverse populations, and address health disparities. The purpose of this paper was to develop recommendations for researchers to increase the accessibility of university health research and to support the inclusion of adults with intellectual disability as participants in health research. METHODS: A comprehensive literature review, consultation with the university ethics review board, and review of United States federal regulations was completed to identify barriers to research participation for individuals with intellectual disability. A collaborative stakeholder working group developed recommendations and products to increase the accessibility of university research for participants with intellectual disability. RESULTS: Eleven key barriers to research participation were identified including gaps in researchers' knowledge, lack of trust, accessibility and communication challenges, and systematic exclusion among others. Together the stakeholder working group compiled seven general recommendations for university health researchers to guide inclusion efforts. Recommendations included: 1) address the knowledge gap, 2) build community partnerships, 3) use plain language, 4) simplify consent and assent processes, 5) establish research capacity to consent, 6) offer universal supports and accommodations, and 7) practice accessible dissemination. In addition, four products were created as part of the stakeholder working group to be shared with researchers to support the inclusion of participants with intellectual disability. 1) Supports I Need Checklist, 2) Plain language glossary of health and research terms, 3) Understanding Consent and Assent in Plain Language, 4) Easy-Read Paper Template. CONCLUSION: Community members and individuals with intellectual disability want to be included in research and are eager to engage as research participants. It is the responsibility of the researcher to open the door to university health research. The recommendations discussed in this paper could increase accessibility for a broader range of research participants and, in particular, promote the inclusion of individuals with intellectual disability to advance health equity in population health research.

Psychological Well-Being and Parent-Child Relationship Quality in Relation to Child Autism: An Actor-Partner Modeling Approach.

Parents of children with autism spectrum disorder (ASD) often report poor psychological well-being, including a high level of parenting stress and depressive symptoms. Little is known about the extent to which poor parent psychological well-being alters the emotional quality of the parent-child relationship in a context of child ASD. This study examined the association between actor (one's own) and partner (one's partner's) level of parenting stress and depressive symptoms and the emotional quality of the parent-child relationship using a Five Minute Speech Sample (FMSS) in 150 families of children with ASD, aged 5-12 years (85.7% male). Mothers and fathers were aged 38.69 (SD = 5.62) and 40.76 (SD = 6.19), respectively; 76% of mothers and 68% of fathers had a college degree. Structural equation modeling, using Analysis of Moment Structures software, was used to test Actor-Partner Interdependence Models. Results indicated that mother's level of parenting stress and depressive symptoms were associated with her own FMSS Warmth and Criticism toward the child with ASD 12 months later in negative and positive directions. Mother's level of parenting stress was also negatively associated with father's FMSS Warmth toward the child with ASD 12 months later. Finally, father's level of parenting stress was positively associated with his FMSS Criticism toward the child with ASD. Overall, findings indicate that the mother-child and father-child relationship are both impacted by parent psychological well-being in families of children with ASD; however, actor effects are stronger for mothers and partner effects were only found for fathers. Implications for interventions are discussed.

Los padres de los niños con trastorno del espectro autista (TEA) generalmente informan un bienestar psicológico deficiente, como un alto nivel de estrés por la crianza y síntomas depresivos. Se sabe muy poco acerca de la medida en la que el bienestar psicológico deficiente de los padres altera la calidad emocional de la relación entre padres e hijos en un contexto de TEA de los niños. El presente estudio analizó la asociación entre el nivel de estrés por la crianza y los síntomas depresivos del actor (los de uno) y de la pareja (la pareja de uno) y la calidad emocional de la relación entre padres e hijos usando una muestra del habla de cinco minutos (Five Minute Speech Sample, FMSS) en 150 familias de niños con TEA, de entre 5 y 12 años (85.7% masculino). Las madres y los padres tenían 38.69 (Desviación Típica = 5.62) y 40.76 (Desviación Típica = 6.19) de edad, respectivamente; el 76 % de las madres y el 68 % de los padres tenía un título universitario. Para evaluar los modelos de interdependencia actor-pareja se utilizaron los modelos de ecuaciones estructurales mediante el software de análisis de estructuras de momentos. Los resultados indicaron que el nivel de estrés por la crianza y los síntomas depresivos de la madre estuvieron asociados con su propia calidez y crítica según la FMSS hacia el niño con TEA doce meses después en direcciones negativas y positivas. El nivel de estrés por la crianza de la madre también estuvo asociado negativamente con la calidez del padre según la FMSS hacia el niño con TEA doce meses después. Finalmente, el nivel de estrés por la crianza del padre estuvo asociado positivamente con su crítica según la FMSS hacia el niño con TEA. En general, los resultados indican que la relación entre la madre y el niño y la relación entre el padre y el niño están ambas influidas por el bienestar psicológico de los padres en las familias de niños con TEA; sin embargo, los efectos del actor son más fuertes para las madres y solo se encontraron efectos de la pareja para los padres. Se debaten las implicancias para las intervenciones.

Quality of life, satisfaction with care, and the experiences of adults with intellectual and developmental disabilities before and during COVID-19.

BACKGROUND: Adults with intellectual and developmental disabilities (IDD) experienced significant disruptions in their access to health care, support services, and essential daily activities such as work, leisure, and routine daily care during COVID-19. OBJECTIVE: The purpose of this study was to describe overall experiences related to COVID-19 among adults with IDD, including the vaccination process, quality of life (QoL), and service satisfaction before and during the pandemic. METHODS: A longitudinal statewide survey of adults with IDD receiving long-term care support using a combination of self- and care partner report was completed prior to (2017; n = 331) and during (2021; n = 206) the pandemic. RESULTS: Qualitative results identified specific vaccine barriers, vaccine decision influencers, and general experiences during COVID-19 for adults with IDD. The importance of support staff, vaccine availability, disruption in daily activities, social context, and mental health implications were noted in responses to all three topics. Quantitative results showed lower QoL during COVID-19 (M = 2.99 vs. 3.14, p = .028); however, when reporter (self vs. care partner) and age were added to the model, differences between pre-vs. during-COVID were no longer significant. No significant differences in satisfaction of services were noted pre-vs. during-COVID-19. Ninety-six percent of respondents reported access to the vaccine, and 16 % experienced barriers getting the vaccine. QoL was associated with receiving the COVID-19 vaccine (r = 0.15, p = .036), level of agreement that the vaccine is safe (r = 0.17, p = .024), and level of agreement that getting the vaccine will help protect other vulnerable people in the community (r = .25, p = .001). Level of satisfaction with quality of services was also associated with level of agreement that the vaccine is safe (r = 0.15, p = .048). CONCLUSIONS: Overall, a better understanding of service continuation, support practices, and experiences related to COVID-19 will prepare us for future environmental and health crises by identifying areas for improvement, intervention, and policy change to meet the ongoing needs of adults with IDD.

An Exploratory Study of Resilience to Stressful Life Events in Autistic Children.

Background: Autistic children experience more stressful life events (SLEs) than their neurotypical peers, which are related to poor mental health outcomes in both neurotypical and autistic individuals. However, there is a lack of longitudinal research assessing the perceived impact of stressful life events on autistic children's mental health. Method: Utilizing a novel statistical technique (Ratcliff et al., 2019), called 'area of resilience to stress events' or ARSE in R, we aimed to quantify aspects of resilience, growth, and non-resilience for 67 autistic children (6-13 years old) enrolled in a larger longitudinal study who experienced a SLE. Parents reported demographic information (e.g., child age, biological sex, household income) as well as the child's internalizing and externalizing symptoms and autism characteristics across multiple time points spaced one year apart (baseline, T2, T3, T4). Results: There was substantial variability in the resilience process within the sample. Older children exhibited a less adaptive resilience process (i.e., higher total scaled scores or arsets). Perceived stress of the disruptive event was not correlated with resilience; however, there was a significant child age x stress severity interaction, suggesting that younger children in households that perceived the disruptive event as highly stressful exhibited more efficient resilience, or lower arsets scores, compared to other children. Conclusions: This study introduces an innovative methodological approach to understanding the effects of stressful life events on the mental health of autistic children. Results have implications for family-based policy and practice and highlight for whom services may be most beneficial.

Trajectories of Competitive Employment of Autistic Adults through Late Midlife.

Autistic adults experience challenges in maintaining employment; however, little is known about patterns of competitive employment through late midlife. This longitudinal study examined the change in hours of competitive employment for a cohort of autistic adults over a 22-year period. The study's aims were to provide a fine-grained analysis of competitive employment patterns, to determine whether there was age-related change, and to test whether trajectories differed between those with and without intellectual disability (ID). Using an accelerated longitudinal design, trajectories of hours of competitive employment were estimated from young adulthood through late midlife in a community-based cohort (n = 341; 1327 observations). Results indicated a significant curvilinear trajectory of age-related change in hours of competitive employment, with differences between those with and without ID. For those without ID, the number of competitive employment hours increased from young adulthood until early midlife, then leveled off and decreased into late midlife. For those with ID, engagement in competitive employment was low throughout. Although competitive employment is just one option for vocational engagement, it is a goal often articulated by autistic adults who seek entry into the general workforce. The present research reveals their degree of engagement in the competitive workforce across the decades of adulthood.

Impact of the Great Recession on Adults With Autism and Their Mothers.

Autistic individuals and their families are at risk for poor outcomes in employment and mental health and may be vulnerable to long-term effects of broader societal conditions. The aim of the current longitudinal study was to understand the impact of the Great Recession of 2007-2009 on autistic individuals and their mothers (N = 392). Hierarchical linear modeling (HLM) results indicated that problem behavior of autistic adults increased in the years following the recession. The rate at which autistic individuals moved away and lived separately from their mothers also slowed during the recession. Mothers experienced significantly higher levels of depressive symptoms postrecession, compared to prerecession. In many other respects, the autistic individuals and their mothers did not experience negative outcomes, suggesting resilience and a strong safety net. These included the physical health and vocational/employment status of the autistic adults and their mothers. Results point to specific areas of vulnerability of autistic individuals and their mothers during the economic downturn, as well as a broad pattern of resilience in these families.

Inhibition of spleen tyrosine kinase attenuates allergen-mediated airway constriction.

Spleen tyrosine kinase (SYK) is a key activator of signaling pathways downstream of multiple surface receptors implicated in asthma. SYK function has been extensively studied in mast cells downstream of the high-affinity IgE receptor, FcεR1. Preclinical studies have demonstrated a role for SYK in models of allergic inflammation, but a role in airway constriction has not been demonstrated. Here, we have used a potent and selective pharmacological inhibitor of SYK to determine the role of SYK in allergen-mediated inflammation and airway constriction in preclinical models. Attenuation of allergic airway responses was evaluated in a rat passive anaphylaxis model and rat and sheep inhaled allergen challenge models, as well as an ex vivo model of allergen-mediated airway constriction in rats and cynomolgus monkeys. Pharmacological inhibition of SYK dose-dependently blocked IgE-mediated tracheal plasma extravasation in rats. In a rat ovalbumin-sensitized airway challenge model, oral dosing with an SYK inhibitor led to a dose-dependent reduction in lung inflammatory cells. Ex vivo analysis of allergen-induced airway constriction in ovalbumin-sensitized brown Norway rats showed a complete attenuation with treatment of a SYK inhibitor, as well as a complete block of allergen-induced serotonin release. Similarly, allergen-mediated airway constriction was attenuated in ex vivo studies from nonhuman primate lungs. Intravenous administration of an SYK inhibitor attenuated both early- and late-phase allergen-induced increases in airway resistance in an Ascaris-sensitive sheep allergen challenge model. These data support a key role for SYK signaling in mediating allergic airway responses.

Synthesis and antibacterial activity of novel water-soluble nocathiacin analogs.

Semi-synthetic water-soluble analogs were synthesized from nocathiacin I through the formation of a versatile intermediate nocathiacin amine 5, and subsequent transformation via reductive amination, acylation or urea formation. Several of the novel analogs displayed much improved aqueous solubility over 1, while retained antibacterial activity. Compound 15 and 16 from the amide series, demonstrated excellent in vitro and in vivo antibacterial activity.

Parental Depression Symptoms and Internalizing Mental Health Problems in Autistic Children.

Autistic youth are at risk for internalizing mental health problems such as depression and anxiety. Similarly, parents of autistic youth report higher levels of depression than parents of typically developing children. The goal of this study was to examine bidirectional associations between parent depression symptoms and the internalizing problems of autistic youth in 188 families across four time points (T1-T4; spaced 12 months apart). A cross-lagged panel model revealed that mother (T1 and T2) and father (T1) depression symptoms positively predicted the youth's internalizing problems 12 months later. The youth's internalizing problems at T3 positively predicted maternal depression symptoms at T4. Future research should explore genetic and environmental pathways that link parent depression and internalizing problems in autistic youth.

Profiles of the parenting experience in families of autistic children.

LAY ABSTRACT: Research shows that parents of autistic children, on average, are stressed; however, there is likely an array of factors that characterize the parenting experience in the context of autism other than stress. Understanding the diversity in the parenting experiences of both mothers and fathers of autistic children is important in the development of family-based intervention. A total of 188 co-habiting couples with an autistic child described their parenting experiences using a series of questionnaires examining their feelings of stress, parenting competence, and parenting attitudes and behaviors. We then sorted responses into profiles-three for mothers and four for fathers. We found that children of parents who reported the least amount of stress, highest feeling of competence, and use of responsive and directive parenting strategies (the Adaptive profile) had children with the least severe behavioral problems and autism symptoms. It was not necessary for both parents to be in the Adaptive category for child emotional and behavioral problems to less severe. We found that children did just as well when one parent was Adaptive compared with when both parents fell into this category.

Using the Three-Minute Speech Sample to Examine the Parent-Adolescent Relationship in Autistic Youth: A Qualitative Analysis.

PURPOSE: This qualitative study examines autistic adolescents' perception of the quality of their relationship with their parent using the Three Minute Speech Sample. METHODS: Twenty autistic youth (13-17 years; 83% male) spoke, uninterrupted, for three minutes about their thoughts and feelings regarding their mothers. Audio-recorded speech samples were transcribed and coded for emergent themes. RESULTS: Adolescents highlighted emotional support and acceptance in the context of their relationship, support mothers provide for mental health, love and caring, efforts to build the relationship through shared activities, and areas of adolescent-parent conflict. CONCLUSION: The TMSS is a low cost, low burden method by which autistic adolescents can comfortably and effectively self-report the quality of their relationship with their parent/caregiver.

Recommendations for post-implementation adaptations to optimize family navigation in pediatric primary care: a qualitative study with parents and navigators.

BACKGROUND: Family Navigation (FN) is an evidence-based care management intervention designed to reduce disparities in access to care by providing families with individually tailored support and care coordination. Early data suggest FN is effective, but effectiveness is significantly influenced by both contextual (e.g. setting) and individual (e.g., ethnicity) variables. To better understand how FN could be tailored to address this variability in effectiveness, we set forth to explore proposed adaptations to FN by both navigators and families who received FN. METHODS: This study was a nested qualitative study set within a larger randomized clinical trial of FN to improve access to autism diagnostic services in urban pediatric primary care practices in Massachusetts, Pennsylvania, and Connecticut serving low-income, racial and ethnic minority families. Following FN implementation, key informant interviews were conducted based on the Framework for Reporting Adaptations and Modifications-Expanded (FRAME) with a purposeful sample of parents of children who received FN (n = 21) and navigators (n = 7). Interviews were transcribed verbatim and were coded using framework-guided rapid analysis to categorize proposed adaptations to FN. RESULTS: Parents and navigators proposed 38 adaptations in four domains: 1) content of the intervention (n = 18), 2) context of the intervention (n = 10), 3) training and evaluation (n = 6), and 4) implementation and scale-up (n = 4). The most frequently endorsed adaptation recommendations focused on content (e.g., lengthening FN, providing parents with additional education on autism and parenting children with autism) and implementation (e.g., increasing access to navigation). Although probes targeted critical feedback, parents and navigators were overwhelmingly positive about FN. CONCLUSIONS: This study builds upon prior FN effectiveness and implementation research by providing concrete areas for adaptation and refinement of the intervention. Recommendations by parents and navigators have the potential to inform improvement of existing navigation programs and development of new programs in similarly underserved populations. These findings are critical as adaptation (cultural and otherwise) is an important principle in the field of health equity. Ultimately, adaptations will need to be tested to determine clinical and implementation effectiveness. TRIAL REGISTRATION: ClinicalTrials.gov, registration number NCT02359084, February 9, 2015.

Myalgic Encephalomyelitis-Chronic Fatigue Syndrome Common Data Element item content analysis.

INTRODUCTION: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a multisystem chronic disease estimated to affect 836,000-2.5 million individuals in the United States. Persons with ME/CFS have a substantial reduction in their ability to engage in pre-illness levels of activity. Multiple symptoms include profound fatigue, post-exertional malaise, unrefreshing sleep, cognitive impairment, orthostatic intolerance, pain, and other symptoms persisting for more than 6 months. Diagnosis is challenging due to fluctuating and complex symptoms. ME/CFS Common Data Elements (CDEs) were identified in the National Institutes of Health (NIH) National Institute of Neurological Disorders and Stroke (NINDS) Common Data Element Repository. This study reviewed ME/CFS CDEs item content. METHODS: Inclusion criteria for CDEs (measures recommended for ME/CFS) analysis: 1) assesses symptoms; 2) developed for adults; 3) appropriate for patient reported outcome measure (PROM); 4) does not use visual or pictographic responses. Team members independently reviewed CDEs item content using the World Health Organization International Classification of Functioning, Disability and Health (ICF) framework to link meaningful concepts. RESULTS: 119 ME/CFS CDEs (measures) were reviewed and 38 met inclusion criteria, yielding 944 items linked to 1503 ICF meaningful concepts. Most concepts linked to ICF Body Functions component (b-codes; n = 1107, 73.65%) as follows: Fatiguability (n = 220, 14.64%), Energy Level (n = 166, 11.04%), Sleep Functions (n = 137, 9.12%), Emotional Functions (n = 131, 8.72%) and Pain (n = 120, 7.98%). Activities and Participation concepts (d codes) accounted for a smaller percentage of codes (n = 385, 25.62%). Most d codes were linked to the Mobility category (n = 69, 4.59%) and few items linked to Environmental Factors (e codes; n = 11, 0.73%). DISCUSSION: Relatively few items assess the impact of ME/CFS symptoms on Activities and Participation. Findings support development of ME/CFS-specific PROMs, including items that assess activity limitations and participation restrictions. Development of psychometrically-sound, symptom-based item banks administered as computerized adaptive tests can provide robust assessments to assist primary care providers in the diagnosis and care of patients with ME/CFS.

Family Impact During the Time Between Autism Screening and Definitive Diagnosis.

Over the past 10 years, identification of Autism Spectrum Disorder (ASD) risk has dramatically increased due to the wide-spread implementation of screening programs; yet, there is limited understanding about parent perceptions and experiences during the time period when risk is identified, but prior to receiving a formal diagnosis-a period that can last months to years given the long wait-lists for formal ASD evaluations. The current study aimed to examine parent perceptions of family impact (i.e., the impact their child's behaviors have on the family) between the time of risk-identification and formal diagnosis among 277 children identified as at-risk for ASD through screening positive in primary care. We aimed to compare family impact among those whose child met diagnostic criteria for ASD and those who did not. Parents of children who received a non-ASD diagnosis reported a higher baseline level of family impact (F[1, 274] = 5.82, p = .017); however, perceived difficult child behavior was a stronger predictor of family impact (t[6] = 13.11, p < .001) than later diagnostic group (t[6] = - 2.10, p = .037), and child functioning did not predict family impact (t[6] = -0.31, p = .76). These results suggest that in this population, perceived difficult child behavior is a stronger predictor of family impact than later diagnostic category and should be considered an important factor in family support.

Efficacy of caspofungin in a juvenile mouse model of central nervous system candidiasis.

Neonatal candidiasis is an increasingly common occurrence causing significant morbidity and mortality and a higher risk of dissemination to the central nervous system (CNS) than that seen with older patients. The current understanding of optimal antifungal therapy in this setting is limited. We have developed a model of disseminated candidiasis with CNS involvement in juvenile mice to assess the efficacy of the echinocandin caspofungin relative to amphotericin B (AmB). Juvenile mice were inoculated intravenously with 5.64 × 10(4) CFU of Candida albicans MY1055. Treatment with caspofungin at 1, 2, 4, and 8 mg/kg of body weight/day, AmB at 1 mg/kg/day, or a vehicle control (VC) was initiated 30 h after infection and continued for 7 days. Pharmacokinetic parameters for caspofungin were also determined. Culture and histology showed evidence of disseminated candidiasis with multifocal encephalitis at the start of antifungal therapy. Survival was 100% in all treated groups, while mortality was 100% in the VC by day 11 after infection. By day 5, all mice in the caspofungin treatment (four doses) groups showed reductions in kidney and brain burden relative to the VC, while AmB treatment reduced kidney burden but gave no reduction of brain fungal burden. Systemic levels of caspofungin were similar in infected and uninfected mice, while brain levels were higher in infected animals. In this juvenile mouse model, caspofungin demonstrated dose-dependent activity, equivalent to or better than that of AmB at 1 mg/kg, against disseminated candidiasis with CNS involvement.

Comparative analysis of the effects of antimuscarinic agents on bladder functions in both nonhuman primates and rodents.

Both the physiological role of muscarinic receptors for bladder function and the therapeutic efficacy of antimuscarinic agents for overactive bladder syndrome are well documented. We investigated the effect of antimuscarinic agents with different subtype selectivity on urodynamic parameters in nonhuman primates and rodents and compared plasma levels of these agents between species. Anesthetized rhesus monkeys were transurethrally catheterized, and the bladder was infused with saline. Urodynamic parameters were measured before and after intravenous drug administration. Tolterodine (nonselective) and oxybutynin (moderately M(3)-selective) increased bladder capacity at lower doses than those required to decrease micturition pressure. However, higher doses of darifenacin (M(3)-selective) were needed to increase the bladder capacity than those needed to decrease the micturition pressure. In rats, tolterodine had no effect on the bladder capacity but decreased the micturition pressure at all of the doses administered. Oxybutynin also decreased micturition pressure and increased bladder capacity at the highest dose. Plasma levels of these drugs overlap in both species. These results suggest that, in addition to the M(3) receptor, other muscarinic receptor subtypes contribute to regulate bladder storage function in nonhuman primates, since less subtype-selective tolterodine and oxybutynin showed higher specificity to the bladder capacity effect than the effect on micturition pressure compared with M(3)-selective darifenacin. In addition, the role of muscarinic receptors in bladder storage function varies between primates and rodents. Compared with rodents, muscarinic receptors may play a more active role during the storage phase to regulate the functional bladder capacity in primates.

Transurethral bladder catheterization of male rhesus macaques: a refinement of approach.

BACKGROUND: Successful transurethral bladder catheterization in male non-human primates can be challenging. An optimized approach for consistent and reproducible catheterization using a refined technique is described. METHODS: Under sedated and non-sedated conditions, transurethral bladder catheterization was performed on 25 male rhesus macaques of varying ages and body weights over time. A refined technique ensuring optimal lubrication of the urethral canal prior to catheter insertion was utilized along with various single and multiple lumen catheters. RESULTS: All animals were successfully catheterized. Sixty-five catheterization sessions were conducted with a high overall success rate (100%). The incidence of catheter (10%) and post-catheterization (2%) complications was low. CONCLUSIONS: The urinary bladder of male rhesus can be reliably and reproducibly catheterized with minimal complication using this approach. Successful catheterization was facilitated by thorough urethral lubrication and using suitable catheters. In addition, this approach may be performed without sedation on thoroughly conditioned animals.

Impact of Working Together for adults with autism spectrum disorder: a multifamily group intervention.

BACKGROUND: Adults with autism spectrum disorder (ASD) have lower engagement in their communities, higher rates of unemployment/underemployment, and continued difficulties with challenging behavior compared to their neurotypical peers. Multi-family psychoeducation emphasizes education and problem-solving with the goal of improving these outcomes for the individual with the disability. METHODS: Using a randomized waitlist control design, the present study evaluated a multi-family group psychoeducation intervention, Working Together, for adults on the autism spectrum without intellectual disability (n = 40). Five waves of data were collected at 3-month intervals. In this design, families in the intervention condition participated in intervention during the 6 months between baseline and time 3 data collection; the waitlist control condition received the intervention immediately after the time 3 data collection. We compared these two conditions, intervention group (n = 20) vs waitlist control group (n = 20), on key outcomes for the adults with ASD: engagement in work-related activities, engagement in meaningful activities, and behavior problems. RESULTS: Results indicated medium to large effect sizes associated with the Working Together intervention across key outcomes, including adults on the spectrum experiencing significant increases in meaningful activities and decreases in internalizing problems. Although increases in work-related activities were not statistically significant, an observed one-half of a standard deviation difference from before to after the intervention indicated clinically significant change. We also found maintenance of the treatment effect through 6 months post-treatment for the intervention group and replication of the treatment effect within the control group after they received the intervention. CONCLUSION: Working Together is a promising multi-family group psychoeducation intervention designed to improve functioning during adulthood. These findings highlight the need for more intervention services research during adulthood and specifically the need for family-centered supports.

A commentary on interpreting the United States preventive services task force autism screening recommendation statement.

In 2016, the US Preventive Services Task Force concluded that there was "insufficient" ("I" statement) evidence to support universal primary care screening for autism spectrum disorder. The statement led to controversy among research and clinical communities. Although a number of papers have since been published arguing for the potential benefit of autism spectrum disorder screening, none adequately address the potential harms of autism spectrum disorder screening. This evidence gap may relate to confusion regarding how the US Preventive Services Task Force conceptualizes and evaluates potential harm. In this commentary, we explore how the US Preventive Services Task Force operationalizes harm and discuss how the potential for harm was described in the "I" statement on autism spectrum disorder screening. This information can serve as a guide for investigators working to study the benefits and harms of autism spectrum disorder screening in order to fill the research gaps cited by the US Preventive Services Task Force report. Finally, we recommend future research directions for exploring harms of autism spectrum disorder screening, filling cited research gaps, and ultimately ensuring that the benefits of autism spectrum disorder screening truly outweigh the harms for all children and their families.