Behind the Mask

Tierney, Siobhan; Burns, Jan

doi:10.1016/b978-0-12-803506-1.00004-8

Cited by 2 publications

(2 citation statements)

References 50 publications

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“…When considered alongside the unique presentation of ASD in females without ID, the large IQ-adaptive functioning gap within the Socialization domain may have particularly negative consequences for ASDf. Distinct social challenges are faced by ASDf relative to ASDm (Tierney & Burns, 2017), as well as differing sex-based cultural and societal expectations (Halladay et al, 2015). ASDf are acutely aware of sex-based expectations and report struggling to conform to these expectations (Milner et al, 2019;Sedgewick et al, 2019).…”

Section: Age (Years) Mean Iq−adaptive Functioning Gap Proportion Scorementioning

confidence: 99%

“…Camouflaging, or the masking of ASD-related social difficulties, occurs more often in females relative to their male peers (Dean et al, 2017;Hull et al, 2020;Kenyon, 2014;Lai et al, 2017;Schuck et al, 2019), and potentially reflects increased social motivation and insight into social challenges in ASDf compared to ASDm (Head et al, 2014). Negative outcomes among ASD women appear to be linked to social difficulties (South et al, 2019), and ASD women describe camouflaging as effortful and exhausting (Autistic Science Lady, 2018; Hull et al, 2017), and as having negative impacts on their well-being (Tierney & Burns, 2017;Tierney et al, 2016). Camouflaging appears to be associated with elevated risk for depression (Somerville et al, 2019) and suicidality (Cassidy et al, 2019).…”

Section: Age (Years) Mean Iq−adaptive Functioning Gap Proportion Scorementioning

confidence: 99%

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The gap between IQ and adaptive functioning in autism spectrum disorder: Disentangling diagnostic and sex differences

McQuaid

Pelphrey

Bookheimer

et al. 2021

Autism

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Adaptive functioning, or the suite of skills essential for real-world, day-to-day functioning, includes daily living, communication, and socialization abilities. Even in the absence of co-occurring intellectual disability (IQ < 70), difficulties in adaptive functioning are prominent in autism spectrum disorder (ASD). Further, ASD individuals without co-occurring intellectual disability (ID) demonstrate a gap between IQ and adaptive functioning, which widens with age. Existing studies of IQ-adaptive functioning discrepancies have characterized predominantly male ASD samples; thus, whether the gap is demonstrated in ASD females is unknown. To probe sex- versus diagnosis-specific differences in adaptive functioning in ASD, we characterized adaptive functioning using the Vineland Adaptive Behavior Scales, Second Edition in 177 non-ID (IQ > 70) ASD (females = 75, males = 102), and 178 typically developing (TD) (females = 87, males = 91) youth, aged 8–17 years. We examined whether each group evidenced a gap between full-scale IQ and adaptive skills and its associations with age. ASD youth evinced significantly lower adaptive skills and a significantly greater IQ-adaptive functioning gap than their same-sex TD peers. In this cross-sectional sample, the increase in the IQ-adaptive functioning gap with age was of similar magnitude for ASD males and females, but only reached statistical significance in males. We discuss unique implications the profound IQ-socialization skills gap in particular may have for ASD females. Lay abstract Adaptive functioning refers to skills that are vital to success in day-to-day life, including daily living (e.g. grocery shopping, food preparation, transportation use), communication (e.g. verbal expression of needs), and socialization skills (e.g. interpersonal skills, including expressing and recognizing emotions, and understanding turn-taking in conversation). Among autistic individuals without intellectual disability, adaptive functioning is not commensurate with intellectual ability (IQ), and instead a gap exists between these individuals’ intellectual ability and their adaptive skills. Further, these autistic individuals show a widening of this gap with increasing age. Existing studies of the gap between IQ and adaptive functioning have studied predominantly male samples. Thus, we do not know if the gap also exists in autistic females. We therefore looked at adaptive functioning and the gap between IQ and adaptive functioning in a large sample of autistic girls and boys without intellectual disability. To disentangle effects of group (autistic vs typically developing) from effects of sex (girls vs boys), we compared autistic girls and boys to one another as well as to their same-sex typically developing peers. Analyses took into consideration differences in IQ between autistic and typically developing youth. We found autistic girls, like autistic boys, show lower adaptive functioning than their same-sex typically developing peers. Results underscore the need to evaluate adaptive functioning in autistic individuals without intellectual disability and to provide necessary supports. The large gap between intellectual ability and socialization skills, in particular, may be of critical importance in improving our understanding of outcomes and mental health difficulties among autistic females.

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Section: Age (Years) Mean Iq−adaptive Functioning Gap Proportion Scorementioning

confidence: 99%

Section: Age (Years) Mean Iq−adaptive Functioning Gap Proportion Scorementioning

confidence: 99%

The gap between IQ and adaptive functioning in autism spectrum disorder: Disentangling diagnostic and sex differences

McQuaid

Pelphrey

Bookheimer

et al. 2021

Autism

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‘I just rolled up my sleeves’: Mothers’ perspectives on raising girls on the autism spectrum

Fowler

O’Connor

2020

Autism

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Little previous research has elucidated the everyday experiences of autistic girls or their families. This study used qualitative in-depth interviews to explore mothers’ experiences of the diagnosis, presentation and impact of caring for a daughter with autism. Nineteen women with autistic daughters (aged between 7 and 18) participated in the research, which took place in Ireland. Thematic analysis identified six themes: What’s Going On?; Road to Acceptance; Beyond the Stigma of Autism; Autism: Like a Girl; Mothers Holding It All Together; and Mothers Roll Up Their Sleeves. The analysis suggests that the path of autism in girls in Ireland is marked by diagnostic delays, social stigma, interpersonal difficulties, mental health comorbidities and parental stress. However, these challenges were offset by the resilience of mothers, buttressed by pride in their daughters and support from other women. Results will inform the development of policy and practice that is sensitive to the lived realities of autistic girls and their families. Lay abstract Autism in boys has been well researched but very little is known about the everyday experiences of autistic girls or their families. Mothers’ views and insights can be very helpful in increasing knowledge around the unique demands of raising a daughter with autism. This study conducted interviews with Irish mothers to examine their own experiences regarding (a) getting an autism diagnosis for their daughter, (b) their daughters’ personal characteristics and (c) the impact of caring for a daughter with autism. The study suggests that the route to an autism diagnosis for girls in Ireland is made more difficult by delays and missed diagnoses, and often followed by inadequate supports. Mothers described autistic girls as presenting with social challenges and mental health difficulties. Many mothers experienced judgement from other parents and family members, acute stress and mental health struggles. However, these challenges were offset by mothers’ resilience, pride in their daughters and support from other women. The findings of this study highlight the importance of specific support for autistic girls and their families.

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Behind the Mask

Cited by 2 publications

References 50 publications

The gap between IQ and adaptive functioning in autism spectrum disorder: Disentangling diagnostic and sex differences

The gap between IQ and adaptive functioning in autism spectrum disorder: Disentangling diagnostic and sex differences

‘I just rolled up my sleeves’: Mothers’ perspectives on raising girls on the autism spectrum

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