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1.
Autism Res ; 16(11): 2208-2219, 2023 11.
Article in English | MEDLINE | ID: mdl-37698531

ABSTRACT

Cognitive flexibility differences are common for autistic individuals and have an impact on a range of clinical outcomes. However, there is currently a lack of well validated measurement tools to assess flexibility in adulthood. The Flexibility Scale was originally designed as a parent-report measure of real-world flexibility challenges in youth. The original Flexibility Scale provides a total score and five subscales: Routines and Rituals, Transitions and Change, Special Interests, Social Flexibility, and Generativity. In this study, we evaluate the factorial validity of the Flexibility Scale as a self-report (Flexibility Scale Self Report) measure of cognitive flexibility, adapted from the original Flexibility Scale, for use by autistic adults. This study includes both a primary sample (n = 813; mean age = 40.3; 59% female) and an independently recruited replication sample (n = 120; mean age = 32.8; 74% female) of individuals who completed the Flexibility Scale Self Report. The analysis consisted of an initial confirmatory factor analysis (CFA) of the original Flexibility Scale structure, followed by exploratory factor analysis (EFA) and factor optimization within a structural equation modeling framework to identify the optimal structure for the questionnaire in adults. The identified structure was then replicated through CFA in the replication sample. Our results indicate an alternative optimal scale structure from the original Flexibility Scale, which includes fewer items, and only three (Routines/Rituals, Transitions and Change, Special Interests) of the five subscales contributing to the flexibility total score. Comparisons revealed no structural differences within the scale based on sex assigned at birth. Here the Generativity and Social Flexibility scales are treated as independent but related scales. The implications for measurement of cognitive flexibility in clinical and research settings, as well as theoretical underpinnings are discussed.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Adolescent , Infant, Newborn , Humans , Adult , Female , Male , Self Report , Autism Spectrum Disorder/psychology , Surveys and Questionnaires , Mental Processes , Reproducibility of Results , Psychometrics
3.
Autism Adulthood ; 5(1): 93-105, 2023 Mar 01.
Article in English | MEDLINE | ID: mdl-36941856

ABSTRACT

Current tools for identifying autism are critiqued for their lack of specificity and sensitivity, especially in autistic people who are older, have higher verbal ability or significant compensatory skills, and are not cisgender boys. This may reflect the following: the historical focus of autism research on White (cisgender) male, upper and middle class children; limited interest in the inner, lived experience of autism; and the predominance of a deficit-based model of autism. We report here on the first attempt of which we are aware to develop a clinical self-report measure of autistic traits as described by autistic people. We believe this is an advance in methodology because prior work in the development of autistic trait/diagnostic measures has prioritized the perspectives of nonautistic clinicians and scientists. The measure was developed under the leadership of two autistic researchers and constructed by leveraging descriptions of autism by autistic people to generate items designed to encompass the range of the autistic experience, using strength-based, accessible language. The team utilized iterative feedback from a panel of autistic experts to refine and enhance the measure, called the Self Assessment of Autistic Traits (SAAT). It is intended for people 16 years or older and uses a format that is designed to increase its accessibility and acceptability for autistic respondents. Future work will report on the preliminary psychometrics of the SAAT, with a long-term goal of advancing our understanding of the inner autistic experience and enhancing the clinical and scientific assessment of autism.


Why is this topic important?: Some people, especially older people, and those who can "mask" their autism, are missed by the current autism assessment tools. This can keep them from getting supports or getting connected to autistic communities. This can harm their well-being and independence. The tools we currently have to assess autism are important, but they were not developed with people who represent the full range of genders, ages, abilities, and cultural identities that characterize autism. Furthermore, current tools emphasize behaviors that other people observe, for example, making eye contact, and do not fully explore the lived or inner experience of autism. What is the purpose of this article?: This article describes the first attempt we know of to begin developing a self-report measure of autistic traits as described by autistic people. What did the authors do?: The authors started by reading what autistic people had to say about autism. They used those readings to come up with initial ideas about autistic experience. Then they used those ideas to write questions for a questionnaire about autistic traits. They asked autistic experts to review the questionnaire and made changes based on what they said. How did the authors work together?: This project was led by two autistic researchers who worked with a team of nonautistic researchers experienced in different research methods. A panel of autistic experts, including both autistic scientist and community leaders, also provided important input. Some of those methods were community-based research, Delphi panels, cognitive interviewing, and measure development. The research team made decisions together. The autistic researchers made the final decisions if there was disagreement. What did they produce?: They produced a preliminary version of the Self Assessment of Autistic Traits (SAAT). The SAAT is a questionnaire that asks if a person has common autistic experiences and traits. It has 58 items that are written with the aim of being respectful and using accessible language. The questionnaire is designed to work with common autistic thinking styles. How will this help autistic adults now or in the future?: The long-term goal is to create a reliable and valid self-report questionnaire that people 16 years old and older can complete to measure their autistic traits. We believe that this could be an important tool for advancing our understanding of the inner autistic experience of autism. This could improve how we assess autistic adults and how we research and think about autism.

4.
Cereb Cortex ; 33(11): 6633-6647, 2023 05 24.
Article in English | MEDLINE | ID: mdl-36721890

ABSTRACT

The common intersection of autism and transgender identities has been described in clinical and community contexts. This study investigates autism-related neurophenotypes among transgender youth. Forty-five transgender youth, evenly balanced across non-autistic, slightly subclinically autistic, and full-criteria autistic subgroupings, completed resting-state functional magnetic resonance imaging to examine functional connectivity. Results confirmed hypothesized default mode network (DMN) hub hyperconnectivity with visual and motor networks in autism, partially replicating previous studies comparing cisgender autistic and non-autistic adolescents. The slightly subclinically autistic group differed from both non-autistic and full-criteria autistic groups in DMN hub connectivity to ventral attention and sensorimotor networks, falling between non-autistic and full-criteria autistic groups. Autism traits showed a similar pattern to autism-related group analytics, and also related to hyperconnectivity between DMN hub and dorsal attention network. Internalizing, gender dysphoria, and gender minority-related stigma did not show connectivity differences. Connectivity differences within DMN followed previously reported patterns by designated sex at birth (i.e. female birth designation showing greater within-DMN connectivity). Overall, findings suggest behavioral diagnostics and autism traits in transgender youth correspond to observable differences in DMN hub connectivity. Further, this study reveals novel neurophenotypic characteristics associated with slightly subthreshold autism, highlighting the importance of research attention to this group.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Transgender Persons , Infant, Newborn , Humans , Adolescent , Female , Brain/diagnostic imaging , Brain Mapping/methods , Autism Spectrum Disorder/diagnostic imaging , Magnetic Resonance Imaging/methods , Neural Pathways/diagnostic imaging
5.
Am Psychol ; 78(7): 886-900, 2023 Oct.
Article in English | MEDLINE | ID: mdl-36716136

ABSTRACT

Gender identity is a core component of human experience, critical to account for in broad health, development, psychosocial research, and clinical practice. Yet, the psychometric characterization of gender has been impeded due to challenges in modeling the myriad gender self-descriptors, statistical power limitations related to multigroup analyses, and equity-related concerns regarding the accessibility of complex gender terminology. Therefore, this initiative employed an iterative multi-community-driven process to develop the Gender Self-Report (GSR), a multidimensional gender characterization tool, accessible to youth and adults, nonautistic and autistic people, and gender-diverse and cisgender individuals. In Study 1, the GSR was administered to 1,654 individuals, sampled through seven diversified recruitments to be representative across age (10-77 years), gender and sexuality diversity (∼33% each gender diverse, cisgender sexual minority, cisgender heterosexual), and autism status (> 33% autistic). A random half-split subsample was subjected to exploratory factor analytics, followed by confirmatory analytics in the full sample. Two stable factors emerged: Nonbinary Gender Diversity and Female-Male Continuum (FMC). FMC was transformed to Binary Gender Diversity based on designated sex at birth to reduce collinearity with designated sex at birth. Differential item functioning by age and autism status was employed to reduce item-response bias. Factors were internally reliable. Study 2 demonstrated the construct, convergent, and ecological validity of GSR factors. Of the 30 hypothesized validation comparisons, 26 were confirmed. The GSR provides a community-developed gender advocacy tool with 30 self-report items that avoid complex gender-related "insider" language and characterize diverse populations across continuous multidimensional binary and nonbinary gender traits. (PsycInfo Database Record (c) 2023 APA, all rights reserved).


Subject(s)
Autistic Disorder , Sexual and Gender Minorities , Infant, Newborn , Humans , Female , Adolescent , Adult , Male , Child , Young Adult , Middle Aged , Aged , Gender Identity , Self Report , Sexual Behavior , Sexuality
6.
Autism ; 27(3): 616-628, 2023 04.
Article in English | MEDLINE | ID: mdl-35916246

ABSTRACT

LAY ABSTRACT: This study compared the first online parent training program for executive function intervention for autism to in-person parent training on the same content. Participants were parents of autistic children, who were between 8 and 12 years of age and did not have intellectual disability. Parents were randomized to the in-person (n = 51) or online (n = 46) training conditions. Both trainings were developed with stakeholder (parents and autistic people) guidance. In this trial, most parents reported that they liked both trainings and that they were able to implement what they learned with their children. Parents in both groups spent equivalent amounts of time (about 8 hours) with the training materials, but while 94% of parents in the in-person training attended both parent trainings, only 59% of parents in the online group completed all 10 online modules. Parents reported that it was difficult to stay motivated to complete the online trainings over the 10-week trial. Parent and child outcomes did not differ significantly between the groups. Overall, parents reported that the trainings resulted in a reduction in their own parenting strain and improvements in their child's flexibility, emotional control, and global executive function, but not planning and organization. These findings indicated brief in-person and online training can help parents learn to support and improve their autistic children's executive function abilities, reducing their own experience of parenting strain. The finding that the online training was equivalent to the in-person trainings is important because it is accessible to parents who encounter barriers to in-person care.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Child , Humans , Executive Function , Parents/psychology , Parenting/psychology
7.
J Clin Child Adolesc Psychol ; 52(2): 212-229, 2023.
Article in English | MEDLINE | ID: mdl-34121545

ABSTRACT

OBJECTIVE: Autism spectrum disorder (ASD) is significantly over-represented among transgender adolescents. Independently, ASD and gender diversity are associated with increased mental health risks. Yet, mental health in autistic-transgender adolescents is poorly understood. This study investigates mental health in the largest matched sample to date of autistic-transgender, non-autistic (allistic) transgender, and autistic-cisgender adolescents diagnosed using gold-standard ASD diagnostic procedures. In accordance with advancing understanding of sex/gender-related autism phenotypes, slightly subthreshold autistic diagnostic presentations (common in autistic girls/women) are modeled. METHOD: This study includes 93 adolescents aged 13-21, evenly divided between autistic-transgender, autistic-cisgender, and allistic-transgender groups; 13 transgender adolescents were at the margin of ASD diagnosis and included within a larger "broad-ASD" grouping. Psychological and neuropsychological evaluation included assessment of mental health, IQ, LGBT stigma, ASD-related social symptoms, executive functioning (EF), and EF-related barriers to achieving gender-related needs. RESULTS: Autistic-transgender adolescents experienced significantly greater internalizing symptoms compared to allistic-transgender and autistic-cisgender groups. In addition to stigma-related associations with mental health, ASD-related cognitive/neurodevelopmental factors (i.e., poorer EF and greater social symptoms) were associated with worse mental health: specifically, social symptoms and EF gender barriers with greater internalizing and EF problems and EF gender barriers with greater suicidality. Comparing across all ASD and gender-related groups, female gender identity was associated with greater suicidality. CONCLUSIONS: Parsing the heterogeneity of mental health risks among transgender youth is critical for developing targeted assessments and interventions. This study identifies ASD diagnosis, ASD phenotypic characteristics, and EF-related gender barriers as potential risks for poorer mental health in transgender adolescents.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Transgender Persons , Humans , Male , Female , Transgender Persons/psychology , Gender Identity , Mental Health , Autism Spectrum Disorder/psychology , Cognition
8.
Behav Modif ; 47(1): 128-153, 2023 01.
Article in English | MEDLINE | ID: mdl-35707864

ABSTRACT

Behavioral problems, such as noncompliance and aggression, are a common referral reason to mental health services for young children. Behavioral parent training (BPT) is the leading intervention for addressing behavioral problems and leads to benefits in a variety of parental factors (e.g., parenting efficacy and parenting stress). While the COVID-19 pandemic dramatically shifted service delivery toward telehealth services, limited work has evaluated the effectiveness of BPT when delivered in a brief, group format through telehealth. The current retrospective chart review study evaluated the engagement to and preliminary effectiveness of a brief version of BPT delivered through telehealth to 64 families of 3- to 7-year-olds referred for behavioral problems. Families attended an average of 4.55 of 6 sessions and most families had two caregivers who engaged in the intervention. Significant reductions in caregivers' report of children's behavioral problems and improvements in parenting self-efficacy resulted. Future research and clinical implications are discussed.


Subject(s)
COVID-19 , Telemedicine , Child , Humans , Child, Preschool , Parenting/psychology , Pandemics , Retrospective Studies , Behavior Therapy/methods , Parents/education
9.
Brain Behav Immun Health ; 20: 100411, 2022 Mar.
Article in English | MEDLINE | ID: mdl-35079709

ABSTRACT

OBJECTIVE: Women with more adverse childhood experiences (ACEs) may face a triple threat of risk factors for cognitive concerns during the menopause transition: reduced estradiol, increased inflammation, and early life stress sequelae. Our objective was to determine the extent to which ACEs and peripheral basal inflammatory markers associate with verbal memory across the menopause transition. METHODS: Penn Ovarian Aging cohort participants (n â€‹= â€‹167) were assessed for ACEs (low (0-1) or high (≥2)) and had remaining stored blood samples at study end assayed for interleukin (IL)-6, IL-1-beta (IL-1ß), C-reactive protein (CRP), and tumor necrosis factor alpha (TNF-α). Annual assessment included a verbal memory test (the Buschke Selective Reminding Test) and menopause stage determination. To estimate the effects of menopause stage, ACEs, and cytokines on verbal memory, repeated cognitive outcome measures were modeled in generalized estimating equations. Covariates included body mass index, smoking, race, education, age at baseline, and baseline verbal memory performance. Cytokine levels were log-transformed. RESULTS: Advancing menopause stage was associated with worse performance on immediate verbal recall and delayed verbal recall (ps â€‹< â€‹0.001). During perimenopause, higher ACE exposure was associated with worse immediate verbal recall at higher levels of TNF-α (slope difference p â€‹= â€‹0.041). CONCLUSIONS: Inflammation may mechanistically link ACEs and verbal memory for high ACE women during perimenopause. Reducing inflammation for these individuals may have positive impact on verbal memory across the menopause transition.

10.
J Clin Psychol ; 78(7): 1388-1406, 2022 07.
Article in English | MEDLINE | ID: mdl-34997971

ABSTRACT

OBJECTIVES: School-based interventions with parent-training components might improve access among lower-income families to effective help for children with neurodevelopmental disorders. This potential might be realized, however, only if parents perceive the interventions as acceptable and therefore engage with treatment. METHODS: Parents (N = 124) of 3rd-5th grade students diagnosed with Autism Spectrum Disorder or Attention-Deficit/Hyperactivity Disorder rated the acceptability of their child's treatment (one of two culturally responsive behavioral interventions). Parent engagement was measured through attendance at parent training sessions and the extent to which they read a corresponding workbook. RESULTS: Education and income correlated inversely with parent perceptions of treatment acceptability. Acceptability correlated positively with engagement, more strongly among lower-income families. Acceptability had an indirect effect on treatment outcome, mediated by parent engagement. CONCLUSIONS: Treatment providers should focus on strategies to increase parent acceptability, with particular attention to improving access for lower-income families.


Subject(s)
Attention Deficit Disorder with Hyperactivity , Autism Spectrum Disorder , Attention Deficit Disorder with Hyperactivity/diagnosis , Attention Deficit Disorder with Hyperactivity/therapy , Autism Spectrum Disorder/therapy , Child , Executive Function , Humans , Parents/education , Schools
11.
Child Psychiatry Hum Dev ; 53(6): 1252-1265, 2022 12.
Article in English | MEDLINE | ID: mdl-34146208

ABSTRACT

Executive function (EF) underlies broad health and adaptive outcomes. For transgender youth, navigating gender discernment and gender affirmation demand EF. Yet, factors associated with transgender youth EF are unknown. We investigate hypothesized predictors of EF: over-represented conditions among transgender youth (anxiety and depression symptoms, autism spectrum disorder [ASD]) and gender-affirming care. One-hundred twenty-four transgender 11-21-year-olds participated. Parents/caregivers completed EF and mental health report measures. ASD diagnostics and gender-affirming medication histories were collected. 21 % of non-autistic and 69 % of autistic transgender youth had clinically elevated EF problems. Membership in the gender-affirming hormone treatment group was associated with better EF. ASD, anxiety symptoms, and membership in the long-duration pubertal suppression group were associated with poorer EF. Given the importance of EF skills for multiple outcomes, and the unique and additional EF demands specific to transgender youths' experiences, EF skill monitoring-and when appropriate, supports-should be considered for transgender youth.


Subject(s)
Autism Spectrum Disorder , Transgender Persons , Adolescent , Anxiety/drug therapy , Autism Spectrum Disorder/drug therapy , Autism Spectrum Disorder/psychology , Executive Function , Hormones , Humans , Transgender Persons/psychology
12.
J Community Psychol ; 50(3): 1717-1735, 2022 04.
Article in English | MEDLINE | ID: mdl-34825375

ABSTRACT

This study investigated the association of training implementation factors (Quality, Impact, Usefulness) with Mental Health First Aid (MHFA)-targeted outcomes (e.g., increased knowledge, confidence helping someone). Trainees who completed MHFA USA training in 2016 (N = 1003) were surveyed post training about its influence on their thoughts and behaviors, and about implementation factors. Some trainees completed 3- and 6-month follow-ups (N = 430, N = 276, respectively). Training Quality, Impact and Usefulness were rated highly. Differences in Quality and Impact across demographic groups were found; trainees from racially and ethnically marginalized backgrounds, and trainees with lower education levels, reported greater effect. Quality and Impact predicted positive changes in MHFA-targeted constructs such as self-efficacy, stigma and trainee perceived positive effect of MHFA strategies for those in crisis. Impact predicted positive change in mental health knowledge; this association strengthened over time. Results provide information about acceptability and perceived Impact of MHFA USA training and lead to recommendations for future evaluation and implementation.


Subject(s)
Mental Disorders , Mental Health , First Aid , Humans , Mental Disorders/psychology , Social Stigma , Surveys and Questionnaires
13.
J Clin Child Adolesc Psychol ; 50(6): 730-745, 2021.
Article in English | MEDLINE | ID: mdl-32375521

ABSTRACT

Objective: A series of studies report elevated rates of autism and autistic characteristics among gender-diverse youth seeking gender services. Although youth with the co-occurrence present with complex care needs, existing studies have focused on co-occurrence rates. Further, clinical commentaries have emphasized provider-centered interpretations of clinical needs rather than key stakeholder-driven clinical approaches. This study aimed to employ community-based participatory research methodologies to develop a key stakeholder-driven clinical group program.Method: Autistic/neurodiverse gender-diverse (A/ND-GD) youth (N = 31), parents of A/ND-GD youth (N = 46), A/ND-GD self-advocates (N = 10), and expert clinical providers (N = 10) participated in a multi-stage community-based participatory procedure. Needs assessment data were collected repeatedly over time from A/ND-GD youth and their parents as the youth interacted with one another through ongoing clinical groups, the curriculum of which was developed progressively through the iterative needs assessments.Results: Separate adolescent and parent needs assessments revealed key priorities for youth (e.g., the importance of connecting with other A/ND-GD youth and the benefit of experiencing a range of gender-diverse role models to make gender exploration and/or gender affirmation more concrete) and parents (e.g., the need for A/ND-related supports for their children as well as provision of an A/ND-friendly environment that fosters exploration of a range of gender expressions/options). Integration and translation of youth and parent priorities resulted in 11 novel clinical techniques for this population.Conclusions: With generally high acceptability ratings for each component of the group program, this study presents a community-driven clinical model to support broad care needs and preferences of A/ND-GD adolescents.


Subject(s)
Autistic Disorder , Transgender Persons , Adolescent , Gender Identity , Humans
14.
Autism ; 25(1): 102-113, 2021 01.
Article in English | MEDLINE | ID: mdl-32859134

ABSTRACT

LAY ABSTRACT: Although autism can be reliably diagnosed as early as 2 years of age, many children are not diagnosed with autism until much later. We analyzed data to determine why many of the 8-year-old children who resided in Colorado and were identified as having autism through a review of their health and/or educational records did not have a documented clinical diagnosis of autism and were not eligible for special education services under an autism eligibility. We found that children who did not have a documented clinical diagnosis of autism and were not eligible for special education services under an autism eligibility were more likely to be female, aggressive, and argumentative. They had a poorer quality of information in their records and were less likely to have had a developmental regression, sleep problems, or an autism screener or diagnostic measure in their records. These results suggest that the symptoms characteristic of autism among this group of children may have been attributed to another disorder and that clinicians may be able to recognize autism more readily in children with more functional impairment and those who experience a developmental regression. We also discovered that differences in symptom presentations among children who had a documented clinical diagnosis of autism and/or were eligible for special education services under an autism eligibility were associated with different ages at autism diagnosis.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Autism Spectrum Disorder/diagnosis , Autism Spectrum Disorder/epidemiology , Child , Colorado , Education, Special , Female , Humans , Male , Prevalence
15.
J Int Neuropsychol Soc ; 26(7): 725-732, 2020 08.
Article in English | MEDLINE | ID: mdl-32178755

ABSTRACT

OBJECTIVE: Executive functions (EF) drive health and educational outcomes and therefore are increasingly common treatment targets. Most treatment trials rely on questionnaires to capture meaningful change because ecologically valid, pediatric performance-based EF tasks are lacking. The Executive Function Challenge Task (EFCT) is a standardized, treatment-sensitive, objective measure which assesses flexibility and planning in the context of provocative social interactions, making it a "hot" EF task. METHOD: We investigate the structure, reliability, and validity of the EFCT in youth with autism (Autism Spectrum Disorder; n = 129), or attention deficit hyperactivity disorder with flexibility problems (n = 93), and typically developing (TD; n = 52) youth. RESULTS: The EFCT can be coded reliably, has a two-factor structure (flexibility and planning), and adequate internal consistency and consistency across forms. Unlike a traditional performance-based EF task (verbal fluency), it shows significant correlations with parent-reported EF, indicating ecological validity. EFCT performance distinguishes youth with known EF problems from TD youth and is not significantly related to visual pattern recognition, or social communication/understanding in autistic children. CONCLUSIONS: The EFCT demonstrates adequate reliability and validity and may provide developmentally appropriate, treatment-sensitive, and ecologically valid assessment of "hot" EF in youth. It can be administered in controlled settings by masked administrators.


Subject(s)
Executive Function , Psychometrics/standards , Adolescent , Attention Deficit Disorder with Hyperactivity/psychology , Autism Spectrum Disorder/psychology , Child , Female , Humans , Male , Memory, Short-Term , Neuropsychological Tests , Reproducibility of Results , Social Interaction
16.
J Autism Dev Disord ; 50(1): 42-50, 2020 Jan.
Article in English | MEDLINE | ID: mdl-31520244

ABSTRACT

Cognitive and behavioral flexibility are important predictors of adaptive behavior in school-age autistic youth. While prior research has utilized broad measures of flexibility, the current study uses the multi-dimensional Flexibility Scale-Revised to examine which specific flexibility skills relate to adaptive functioning. Through parent-report measures on 216 autistic youth, flexibility explained 22.2% of variance in adaptive socialization skills (p < 0.001). Specifically, Social Flexibility accounted for significant variance in adaptive socialization skills, while Transitions/Change approached significance. In exploratory analyses, flexibility explained 11.5% of variance in Communication skills (p < 0.001). This pattern remained after controlling for co-occurring ADHD symptoms. The current study helps to refine the relationship between flexibility and adaptive behavior, which may ultimately help to inform more targeted interventions.


Subject(s)
Adaptation, Psychological , Autism Spectrum Disorder/psychology , Socialization , Adolescent , Child , Female , Humans , Male
17.
Clin Pract Pediatr Psychol ; 7(4): 396-404, 2019 Dec.
Article in English | MEDLINE | ID: mdl-33767942

ABSTRACT

OBJECTIVE: Research addressing the co-occurrence of autism (and/or neurodiversity) and gender-diversity (A/ND-GD) has been conducted largely without the perspectives and voices of the A/ND-GD community. Including A/ND-GD community advocates as research partners may be a critical next step for advancing research initiatives on the co-occurrence given the apparent complexity and alterity of the A/ND-GD experience. METHOD: Consistent with the community-based participatory research (CBPR) model we propose herein, our authorship team includes a partnership between clinician researchers and diverse A/ND-GD community collaborators. Multiple facets of the A/ND-GD lived experience are examined, including through narratives provided by our A/ND-GD community partners. RESULTS: Based on our experience conducting A/ND-GD-related research and our lived experience as A/ND-GD self-advocates, we highlight challenges in this line of research, including risks of conducting studies without the involvement of the A/ND-GD community. And given that many A/ND-GD youth present with gender-related urgency during the teen years, we provide a developmental framework for how CBPR-informed methods may enrich our understanding of the care needs of these young people and provide context for the apparent heterogeneity in their gender needs and trajectories over time. CONCLUSIONS: Integrating CBPR methodologies in A/ND-GD research initiatives has the potential to optimize the relevance of the research questions asked and the interpretation and contextualization of study findings.

18.
J Am Acad Child Adolesc Psychiatry ; 57(11): 885-887, 2018 Nov.
Article in English | MEDLINE | ID: mdl-30392631

ABSTRACT

Turban and van Schalkwyk assert in their Translations article, "'Gender Dysphoria' and Autism Spectrum Disorder: Is the Link Real?" that an over-representation of autism spectrum disorder (ASD) in gender dysphoria is unsupported based on current evidence. Turban and van Schalkwyk discuss 7 of the currently 19 available empirical studies (excluding reviews and case reports) of the over-occurrence of ASD and/or autism traits with gender dysphoria/diversity. They are correct to note that some ASD screeners may lack specificity; that is, a clinical-range total score could indicate non-ASD-related mental health conditions or other developmental difference. However, they do not account for the 7 available studies which specifically report rates of clinical diagnoses of ASD among unselected gender-diverse samples. We suggest also that many of the studies that assess ASD-symptoms in gender-diverse groups are more convincing than suggested by Turban and van Schalkwyk because they employ measures assessing the multi-dimensionality of ASD symptoms and report significant elevations not only for socially-related symptoms but also for the various components of restricted and repetitive behaviors and interests (RRBI) core to ASD. We come together to write this response as gender clinicians and researchers, autism clinicians and researchers, and key stakeholders, including autistic and autistic transgender self-advocates. We work and live with the co-occurrence of autism and gender diversity on a daily basis, and we are concerned that perpetuating misunderstanding about the co-occurrence places individuals at risk.


Subject(s)
Autism Spectrum Disorder , Autistic Disorder , Gender Dysphoria , Transsexualism , Gender Identity , Humans
19.
J Autism Dev Disord ; 48(12): 4039-4055, 2018 Dec.
Article in English | MEDLINE | ID: mdl-30140984

ABSTRACT

Despite research exploring autism in gender-diverse adolescents, no studies have elicited these individuals' perspectives. In-depth interviews with 22 well-characterized autistic gender-diverse adolescents revealed critical themes, including: recollections of pre-pubertal gender nonconformity; vivid experiences of gender dysphoria; a fear of social gender expression due to perceived animosity toward transgender people; and specific challenges that result from the interplay of gender diversity and neurodiversity. During the ~ 22 month study social gender affirmation increased in six participants and gender dysphoria attenuated in four participants. Given the ethical imperative to understand and prioritize the voiced perspectives and needs of autistic gender minority adolescents as well as the discovery of shared themes and experiences in this population, results should inform clinical research approaches and priorities.


Subject(s)
Adolescent Behavior/psychology , Autistic Disorder/psychology , Gender Dysphoria/psychology , Obsessive Behavior/psychology , Thinking , Transgender Persons/psychology , Adolescent , Autistic Disorder/diagnosis , Autistic Disorder/epidemiology , Child , Female , Gender Dysphoria/diagnosis , Gender Dysphoria/epidemiology , Humans , Male , Obsessive Behavior/diagnosis , Obsessive Behavior/epidemiology , Perception , Young Adult
20.
J Clin Child Adolesc Psychol ; 47(1): 105-115, 2018.
Article in English | MEDLINE | ID: mdl-27775428

ABSTRACT

Evidence indicates an overrepresentation of youth with co-occurring autism spectrum disorders (ASD) and gender dysphoria (GD). The clinical assessment and treatment of adolescents with this co-occurrence is often complex, related to the developmental aspects of ASD. There are no guidelines for clinical care when ASD and GD co-occur; however, there are clinicians and researchers experienced in this co-occurrence. This study develops initial clinical consensus guidelines for the assessment and care of adolescents with co-occurring ASD and GD, from the best clinical practices of current experts in the field. Expert participants were identified through a comprehensive international search process and invited to participate in a two-stage Delphi procedure to form clinical consensus statements. The Delphi Method is a well-studied research methodology for obtaining consensus among experts to define appropriate clinical care. Of 30 potential experts identified, 22 met criteria as expert in co-occurring ASD and GD youth and participated. Textual data divided into the following data nodes: guidelines for assessment; guidelines for treatment; six primary clinical/psychosocial challenges: social functioning, medical treatments and medical safety, risk of victimization/safety, school, and transition to adulthood issues (i.e., employment and romantic relationships). With a cutoff of 75% consensus for inclusion, identified experts produced a set of initial guidelines for clinical care. Primary themes include the importance of assessment for GD in ASD, and vice versa, as well as an extended diagnostic period, often with overlap/blurring of treatment and assessment.


Subject(s)
Autism Spectrum Disorder/psychology , Gender Dysphoria/psychology , Adolescent , Delphi Technique , Female , Guidelines as Topic , Humans , Male
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