Roadblocks and detours on pathways to a clinical diagnosis of autism for girls and women: A qualitative secondary analysis.

BACKGROUND: Autism is not always considered for girls and women until later along their clinical diagnostic pathways. Misdiagnosis or late diagnosis can pose significant disadvantages with respect to accessing timely health and autism-related services and supports. Understanding what contributes to roadblocks and detours along clinical pathways to an autism diagnosis can shed light on missed opportunities for earlier recognition. OBJECTIVE: Our objective was to examine what contributed to roadblocks, detours, and missed opportunities for earlier recognition and clinical diagnosis of autism for girls and women. DESIGN: We conducted a qualitative secondary analysis using data from a Canadian primary study that examined the health and healthcare experiences of autistic girls and women through interviews and focus groups. METHODS: Transcript data of 22 girls and women clinically diagnosed with autism and 15 parents were analysed, drawing on reflexive thematic analysis procedures. Techniques included coding data both inductively based on descriptions of roadblocks and detours and deductively based on conceptualizations of sex and gender. Patterns of ideas were categorized into themes and the 'story' of each theme was refined through writing and discussing analytic memos, reflecting on sex and gender assumptions, and creating a visual map of clinical pathways. RESULTS: Contributing factors to roadblocks, detours, and missed opportunities for earlier recognition and diagnosis were categorized as follows: (1) age of pre-diagnosis 'red flags' and 'signals'; (2) 'non-autism' mental health diagnoses first; (3) narrow understandings of autism based on male stereotypes; and (4) unavailable and unaffordable diagnostic services. CONCLUSION: Professionals providing developmental, mental health, educational, and/or employment supports can be more attuned to nuanced autism presentations. Research in collaboration with autistic girls and women and their childhood caregivers can help to identify examples of nuanced autistic features and how context plays a role in how these are experienced and navigated.

Impact of social-, health-, and disability-related factors on pregnancy outcomes in women with intellectual and developmental disabilities: A population-based latent class analysis.

BACKGROUND: Studies have shown women with intellectual and developmental disabilities (IDD) have elevated risks of perinatal complications, but few studies have examined how social, health, and disability-related factors affect these risks. OBJECTIVES: To identify and describe subgroups of pregnant women with IDD according to social, health, and disability-related factors and examine the risks of perinatal complications in these subgroups compared to women without IDD. METHODS: We performed a population-based cohort study in Ontario, Canada, of women with (n = 1922) and without (n = 1,126,854) IDD, with a singleton birth in 2003-2018. We used latent class analysis (LCA) to identify subgroups of women according to social (e.g., age), health (e.g., chronic medical conditions), and disability-related (e.g., IDD type) characteristics. Modified Poisson regression was then used to compare the risks of hypertensive disorders of pregnancy, cesarean delivery, and preterm birth across identified subgroups to women without IDD. RESULTS: The LCA identified 4 classes of women with IDD: (1) young women who were mostly healthy and had little primary care before pregnancy (n = 253); (2) older women who were mostly healthy (n = 795); (3) young to mid-aged women who had significant comorbidities (n = 181); and (4) young women, many of whom were autistic, who had some medical comorbidities and significant psychiatric comorbidities (n = 693). Class 3 consistently had the greatest risks of perinatal complications, across all IDD groups, compared to women without IDD. CONCLUSIONS: These findings underscore the importance of multidisciplinary care approaches tailored to the needs of at-risk women with IDD, in the preconception and perinatal periods.

Physical health of autistic girls and women: a scoping review.

BACKGROUND: There is a growing recognition of sex and gender influences in autism. Increasingly, studies include comparisons between sexes or genders, but few have focused on clarifying the characteristics of autistic girls'/women's physical health. METHODS: A scoping review was conducted to determine what is currently known about the physical health of autistic girls/women. We screened 1112 unique articles, with 40 studies meeting the inclusion criteria. We used a convergent iterative process to synthesize this content into broad thematic areas. RESULTS: Autistic girls/women experience more overall physical health challenges compared to non-autistic girls/women and to autistic boys/men. Emerging evidence suggests increased prevalence of epilepsy in autistic girls/women compared to non-autistic girls/women and to autistic boys/men. The literature also suggests increased endocrine and reproductive health conditions in autistic girls/women compared to non-autistic girls/women. Findings regarding gastrointestinal, metabolic, nutritional, and immune-related conditions are preliminary and inconsistent. LIMITATIONS: The literature has substantial heterogeneity in how physical health conditions were assessed and reported. Further, our explicit focus on physical health may have constrained the ability to examine interactions between mental and physical health. The widely differing research aims and methodologies make it difficult to reach definitive conclusions. Nevertheless, in keeping with the goals of a scoping review, we were able to identify key themes to guide future research. CONCLUSIONS: The emerging literature suggests that autistic girls/women have heightened rates of physical health challenges compared to non-autistic girls/women and to autistic boys/men. Clinicians should seek to provide holistic care that includes a focus on physical health and develop a women's health lens when providing clinical care to autistic girls/women.

Prevalence of co-occurring mental health diagnoses in the autism population: a systematic review and meta-analysis.

BACKGROUND: Co-occurring mental health or psychiatric conditions are common in autism, impairing quality of life. Reported prevalences of co-occurring mental health or psychiatric conditions in people with autism range widely. Improved prevalence estimates and identification of moderators are needed to enhance recognition and care, and to guide future research. METHODS: In this systematic review and meta-analysis, we searched MEDLINE, Embase, PsycINFO, Scopus, Web of Science, and grey literature for publications between Jan 1, 1993, and Feb 1, 2019, in English or French, that reported original research using an observational design on the prevalence of co-occurring mental health conditions in people with autism and reported confirmed clinical diagnoses of the co-occurring conditions and autism using DSM or ICD criteria. For co-occurring mental health conditions reported with at least 15 datapoints (studies), we assessed risk of bias and we determined pooled estimates of prevalence for different co-occurring conditions in autism using random-effects models, and descriptively compared these with prevalence estimates for the general population from the literature (post hoc). We investigated heterogeneity in prevalence estimates using random-effects meta-regression models. This systematic review is registered with PROSPERO, CRD42018103176. FINDINGS: Of 9746 unique studies identified, 432 were selected for full-text review. 100 studies were eligible for inclusion in our qualitative synthesis, of which 96 were included in our meta-analyses. 11 categories of co-occurring conditions were investigated, of which eight conditions were included in the meta-analyses and three were descriptively synthesised (ie, trauma and stressor-related disorders, substance-related and addictive disorders, and gender dysphoria). From our meta-analyses, we found overall pooled prevalence estimates of 28% (95% CI 25-32) for attention-deficit hyperactivity disorder; 20% (17-23) for anxiety disorders; 13% (9-17) for sleep-wake disorders; 12% (10-15) for disruptive, impulse-control, and conduct disorders; 11% (9-13) for depressive disorders; 9% (7-10) for obsessive-compulsive disorder; 5% (3-6) for bipolar disorders; and 4% (3-5) for schizophrenia spectrum disorders. Estimates in clinical sample-based studies were higher than in population-based and registry-based studies, and these estimates were mostly higher than those in the general population (post hoc). Age, gender, intellectual functioning, and country of study were associated with heterogeneity in prevalence estimates, yet remaining heterogeneity not explained was still substantial (all I2 >95%). INTERPRETATION: Co-occurring mental health conditions are more prevalent in the autism population than in the general population. Careful assessment of mental health is an essential component of care for all people on the autism spectrum and should be integrated into clinical practice. FUNDING: Academic Scholars Awards, Department of Psychiatry, University of Toronto; O'Brien Scholars Program, Slaight Family Child and Youth Mental Health Innovation Fund, and The Catherine and Maxwell Meighen Foundation via the Centre for Addiction and Mental Health Foundation.

Home-based Nintendo Wii training to improve upper-limb function in children ages 7 to 12 with spastic hemiplegic cerebral palsy.

This pilot study compared a Nintendo Wii intervention to single-joint resistance training for the upper limb in children ages 7 to 12 with spastic hemiplegic cerebral palsy (CP). Children were randomized to Wii training (n= 3), or resistance training (n= 3) and trained at home for 6 weeks. Pre, post and 4-week follow-up measures were collected. Outcome measures were the Melbourne Assessment (MA2), and ABILHAND-Kids, and grip strength. Compliance, motivation and feasibility of each intervention was explored using daily logbook responses and questionnaires. Descriptive statistics were used. Three children improved in the MA2, two of which were in the Wii training group. Improvements in the ABILHAND-Kids were minimal for all participants. Grip strength improvements were observed in 3 participants, two of which were in the resistance training group. The Wii training group reported higher compliance and more consistently positive responses to motivation and feasibility questions. Therefore, Wii training may be an effective home-based rehabilitation strategy, and is worth exploring in a larger trial. Implications of Wii training in the context of motivation theory are discussed.