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. Author manuscript; available in PMC: 2021 Sep 1.
Published in final edited form as: Res Autism Spectr Disord. 2020 Jul 7;77:101610. doi: 10.1016/j.rasd.2020.101610

Parent-Child Concordance on the Pubertal Development Scale in Typically Developing and Autistic Youth

Ann Clawson a,1, John F Strang a, Gregory L Wallace b, Veronica Gomez-Lobo c, Allison Jack d, Sara J Webb e, Kevin A Pelphrey f, GENDAAR Research Consortium
PMCID: PMC7449027  NIHMSID: NIHMS1611587  PMID: 32863862

Abstract

Background

Characterizing puberty in autism spectrum disorder (ASD) is critical given the direct impacts of pubertal progression on neural, cognitive, and physical maturation. Limited information is available about the utility and parent-child concordance of the self-report and parent-report Pubertal Development Scale (PDS) in ASD, an economical and easily administered measure.

Method

The primary aim of this study was to examine the concordance between self-report and parent-report PDS ratings in autistic males and females ages 8–17y compared to typically developing (TD) youth, including using the PDS to derive informant-based estimates of adrenal and gonadal development. We hypothesized that there would be greater parent-youth discrepancies in pubertal ratings among autistic males. Our second aim was exploratory; we examined whether individual characteristics impact PDS concordance and hypothesized that lower intellectual and adaptive skills, higher autistic traits, and reduced self-awareness/monitoring would correlate with lower concordance.

Results

There were no significant diagnostic group differences in parent-youth concordance for overall PDS scores among males and females. Autistic males had significantly lower inter-item agreement with their parents than TD males and had lower agreement for both adrenal and gonadal aspects of pubertal maturation (adrenal κ=.48; gonadal κ=.55).

Conclusions

The PDS is a feasible measure in ASD. Greater parent-youth discrepancies in autistic males may be due to reduced parental awareness or reduced insight into pubertal maturation among autistic males. Future research is needed to further elucidate individual and/or environmental characteristics that influence youth- and parent-reported PDS scores, including differences in self-perception and insight.

Keywords: autism spectrum disorder (ASD), puberty, pubertal development scale

Introduction

During puberty, complex hormonal, neural, and behavioral changes occur, triggered first by adrenarche (initiating adrenal androgens) and later also by gonadarche (initiating the production of sex steroids, such as estradiol and testosterone, and the development of primary and secondary sexual characteristics). Cognitive control and social processing are two of the systems that undergo profound maturation during puberty, and these systems are implicated in the symptom presentation and functional outcomes in autism spectrum disorder (ASD; Uddin, Supekar, & Menon, 2013; Vijayakumar, Op de Macks, Shirtcliff, & Pfeifer, 2018). While certain symptoms of ASD tend to improve during adolescence (Anderson et al., 2011; Magiati et al., 2014), there is evidence that many autistic youth do not keep up with developmental demands and by early adulthood may fail to meet multiple functional outcomes (Billstedt et al., 2005; Magiati et al., 2014). Pubertal changes may play a unique role in brain development of autistic youth given findings of a shift from neural hyper-connectivity in childhood to neural hypo-connectivity in adulthood, and may explain increased seizure disorders in ASD during adolescence (Besag, 2018; Uddin et al., 2013).

Age-based trajectories are frequently used to understand the development of social, behavioral, cognitive, and neural processes in ASD. However, age alone is not a reliable indicator of development during adolescence (Dorn et al., 2006). Measuring puberty in ASD is important in order to differentiate age-related and puberty-related factors, including differences related to both adrenal and gonadal aspects of pubertal development, each of which may have different effects on neural, cognitive, and physical processes (Dorn & Biro, 2011; Shirtcliff et al., 2009). Further, characterizing the nuances of age vs. pubertal factors will inform understanding of sex differences (defined here as sex-assigned-at-birth) in ASD given that sex-based hormonal processes, including those during puberty, may contribute to differences in symptom presentation among males and females (Romano et al., 2016).

One of the challenges inherent in assessing puberty, particularly in ASD, is selecting feasible and acceptable measures of pubertal development. Methods include self-report and parent-report measures, hormonal measurement (completed by saliva/blood sampling), or visual/physical examination (i.e., Tanner staging; Dorn & Biro, 2011; Dorn et al., 2006; Marshall & Tanner, 1969, 1970). These common measurement approaches each have advantages and disadvantages impacting the acceptability, feasibility, sensitivity, reliability, and validity of assessment (see Dorn & Biro, 2011 for a comprehensive review). For example, hormonal and physical exam measures may have greater precision, but self-report and parent-report measures are less invasive, more economical, and capture individual perceptions of pubertal progression (Dorn et al., 2006; Dorn & Biro, 2011). Understanding the utility of pubertal characterization approaches is critical in making informed decisions for research and clinical practice with autistic youth.

One of the most commonly used and easily administered measures of puberty is the self-report and parent-report Pubertal Development Scale (PDS; Petersen, Crockett, Richards, & Boxer, 1988). The PDS assesses the onset and progression of key pubertal indicators including growth spurt, body hair, skin change, voice change and facial hair (in males), and menarche and breast development (in females). The PDS lacks the precision of hormonal and physical exam-based measures (Bond et al., 2006; Desmangles et al., 2006; Dorn & Biro, 2011) but is a cost-effective and noninvasive alternative that may be particularly useful with autistic youth, some of whom report elevated anxiety and emotional distress during physical examinations and/or medical procedures (Davit et al., 2011; Evans et al., 2005; MacNeil et al., 2009). Additionally, the PDS queries a broad range of pubertal changes, and a scoring algorithm validated by Shirtcliff and colleagues allows for the assessment of adrenal (e.g., body/pubic hair, skin changes) and gonadal (e.g., growth spurt, breast development/menarche, facial hair/voice change) development (Dorn et al., 2006; Shirtcliff et al., 2009). This separation of adrenal and gonadal processes is important when considering neurodevelopment, as initial research suggests that these two processes have significant but different impacts on the brain (Vijayakumar et al., 2018).

The PDS benefits from both self-report and parent-report forms, the comparison of which may be especially useful in understanding differences in youth and parent perceptions, including the ways that autistic people understand and recognize physical changes during puberty. There is increasing awareness in child and adolescent research that youth self-report captures key components of experience that parents may not be able to identify (Kaurin et al., 2016; Keith et al., 2019), and that understanding differences/similarities between raters lends unique insight into individual perceptions and environmental factors (De Los Reyes & Kazdin, 2004; Kaurin et al., 2016). The physical changes associated with puberty are personal and variable across individuals, suggesting that self-report may uniquely capture individual experiences of puberty. While the PDS differs from other youth/parent report measures because it assesses concrete and observable physical processes, there is evidence in typically developing (TD) youth that the PDS self-report is related to self-esteem and body image, reinforcing that the PDS may also provide important insight into youth self-perception (Dorn et al., 2003, 2006).

Several studies have used forms of the PDS in the autistic population. Muscatello & Corbett (2018) observed a strong correlation between age and PDS parent report ratings among youth with ASD and TD youth. Also, May et al. (2017) identified comparable pubertal timing in youth with ASD relative to TD youth on the parent-report PDS for youth ages 8–13 and self-report PDS for youth ages 14–15.

Recently, Corbett, Muscatello, Tanguturi, McGinn, and Ioannou (2019) compared physical exam by physicians to the parent-report PDS and a separate self-report picture rating measure in a sample of autistic youth and TD youth in the early stages of puberty (ages 10–13.5 years). The parent-report PDS had reasonable agreement with physical exam, and agreement with physical exam was higher in parents than youth. Corbett and colleagues (2019) also observed that TD parents were more accurate across genders, although there was better parental accuracy for breast stage in girls than genital development in boys. Self-report ratings also revealed that autistic girls underestimated breast stage and that all males (regardless of diagnostic status) overestimated their Tanner stage. The authors indicated that their findings fit with broader research on sexual development, including evidence that parents of autistic males may underestimate their child’s sexual knowledge or experiences (Dewinter et al., 2016) and that parents of autistic girls may avoid conversations about sexuality (Sedgewick et al., 2018).

Taken as a whole, prior research suggests the possibility that the PDS may be a useful measure in ASD, and that there may be sex-assigned-at-birth and diagnostic differences in parent- and self-reports of pubertal progression. However, there are key limitations in the available literature on the use of the PDS in ASD. First, none of the prior studies included the self-report PDS across the full age range of puberty. As is common in ASD research, most researchers did not include a substantial sample of autistic females, reducing generalizability and limiting information about the female autistic experience. Though there has been some limited examination of separate adrenal processes and Tanner staging (Corbett et al., 2019; May et al., 2017), no studies have used the PDS to approximate adrenal and gonadal processes in ASD. As noted, considering adrenal and gonadal indices is important to understanding the development of social and cognitive processes, systems related to symptom presentation and functional outcomes in ASD (Shattuck et al., 2007; Vijayakumar et al., 2018). Finally, no studies have compared parent-report and self-report PDS in ASD. Parent-youth concordance can reveal important information beyond accuracy about differences in youth and parent perceptions, particularly when considering both sex-assigned-at-birth and diagnostic differences (Lerner et al., 2017).

Given the limitations of the current literature, we sought to examine the self-report and parent-report PDS in a sex-assigned-at-birth balanced sample of TD and ASD youth, spanning the years of typical pubertal onset and completion. Our first aim was to examine the degree of concordance between self-report and parent-report ratings. Based on prior publications and recommendations (De Los Reyes & Kazdin, 2004; Dickson et al., 2018; Lau et al., 2004; Youngstrom et al., 2000), we evaluated concordance using three different estimates: 1) PDS Discrepancy Score (PDS-Diff), calculated by subtracting standardized self-report from parent-report scores; 2) item-level discrepancies to account for differences in item-level scores between parents and youth (D2); and 3) kappa coefficients for agreement on categorical adrenal and gonadal scores. Consistent with prior research indicating greater awareness of pubertal progression among TD parents and a tendency for parents of autistic males to underestimate their son’s sexual knowledge (Corbett et al., 2019; Dewinter et al., 2016), we hypothesized that there would be greater parent-youth discrepancies in pubertal ratings among autistic males.

Our second aim was exploratory: to understand contributions to PDS concordance, we examined the impact of individual characteristics (e.g., intellectual functioning, ASD symptoms, adaptive and executive functioning) on PDS concordance. We hypothesized that lower intellectual and adaptive skills, higher autistic traits, and reduced self-monitoring would be associated with lower concordance.

Method

Study information and data are available through the National Institute of Mental Health Data Archive (https://nda.nih.gov/edit_collection.html?id=2021). Syntax for primary data analyses is included in supplementary materials available online.

Participants

Data was collected as part of an Autism Centers of Excellence network study. Participants were recruited at Yale University, Seattle Children’s Research Institute, Boston Children’s Hospital/Harvard Medical School, and the University of California Los Angeles. Data aggregation and analysis also took place at George Washington University and the University of Southern California. Study procedures were approved by Institutional Review Boards at each site and were in compliance with the Declaration of Helsinki. Participants and their parents provided informed consent/assent. Study participation included collection of neuroimaging data (magnetic resonance imaging and electroencephalography), genetic information, diagnostic classification, cognitive measures, and self- and parent-report questionnaires. For most participants, questionnaires were administered to the parent and youth at the same study visit. The measures were administered as initially designed (e.g., paper and pencil with the respondent independently reading questions and marking their answers). Only PDS scores, correlates of interest, and relevant demographic measures are included in the present manuscript.

We collected data from youth ages 8–17 years. Sex was defined as sex assigned at birth. Exclusionary criteria included: full scale IQ ≤70 as measured by the Differential Ability Scales, Second Edition (DAS-II) General Conceptual Ability standard score (GCA; Elliott, 1990), twin status, active tic disorder, seizures in the past year, medical conditions likely to be etiological, visual/auditory impairment after correction, sensory-motor difficulties precluding use of diagnostic instruments, neurologic disorder, and history of perinatal injury (birth <36 weeks, weight <2000 grams, NICU stay >3 days). TD youth were excluded if they had first- or second-degree relatives with ASD, were diagnosed/referred or suspected of having a developmental or psychiatric disorder, and if they obtained a total T-score >60 on the Social Responsiveness Scale, Second Edition and/or raw score >11 on the Social Communication Questionnaire, Lifetime Version. Use of benzodiazepines, barbituates, or anti-epileptics was exclusionary; other medications were permitted provided stability within the past six weeks.

Autism diagnoses were confirmed by expert clinicians using Module 3 or 4 of the Autism Diagnostic Observation Schedule, Second Edition (ADOS-2; Lord, Luyster, Gotham, & Guthrie, 2012) and Autism Diagnostic Interview, Revised (ADI-R; Lord, Rutter, & Le Couteur, 1994). Participants with ASD were included if they met criteria established by the NICHD/NIDCD Collaborative Programs for Excellence in Autism (Lainhart et al., 2006).

Parent-report and self-report forms of the PDS were collected from all sites except one (Seattle Children’s Research Institute), which only administered parent-report forms to all participants. Thus, a subset of the larger sample had both self-report and parent-report forms. Only participants with both forms were included in analyses. Of the 166 ASD and 159 TD participants providing data, 185 (95 ASD, 90 TD) had both parent-report and self-report ratings.

Behavioral Measures

Pubertal Development Scale

Puberty was assessed using the self-report and parent-report Pubertal Development Scale (see Petersen et al., 1988 to access the scale). In TD youth, the PDS has good reliability (Petersen et al., 1988). Several studies indicate that PDS scores are related to physical exam and hormone levels (Hibberd et al., 2015; Schmitz et al., 2004; Shirtcliff et al., 2009). Other studies also indicate that in some populations (i.e., obese) the PDS is a poor proxy for hormonal and/or physical measures (Bond et al., 2006; Desmangles et al., 2006; Dorn & Biro, 2011; Wu et al., 2001). The parent-report and self-report forms consist of five items each in which physical development is rated from 1 (not started) to 4 (complete), with the exception of one item for females assessing menarche. Menstruation was reported as: not begun (scored as 1), barely started, started (scored as 4). Due to concerns about the validity of “barely started” responses for menstruation, individuals reporting “barely started” were removed (n=8) and only “not begun” and “started” responses were considered when calculating total PDS scores. Consistent with the methods outlined by Petersen et al. (1988), PDS scores were calculated by averaging PDS item scores.

To classify participants based on specific aspects of puberty, we used a scoring algorithm that has been validated to categorize PDS items based on Tanner stages into adrenal and gonadal maturation, yielding PDS adrenal and PDS gonadal scores (Shirtcliff et al., 2009). In males and females, items capturing pubic/body hair and skin changes were used for adrenal maturation. Growth spurt, breast development, and menarche items were used for gonadal maturation in females; growth spurt, deepening of voice, and facial hair growth items were used in males. Prior research using this algorithm revealed modest concordance with physical exam and indicated that for males, adrenal and gonadal scores were similar or better than physical exam in predicting hormone levels; in females, gonadal scores were more concordant with hormones than the physical exam, while adrenal scores were not as related to hormones (Shirtcliff et al., 2009).

Vineland Adaptive Behavior Scales, Second Edition

The parent-report Vineland Adaptive Behavior Scales, Second Edition (Sparrow et al., 2005) Adaptive Behavior Composite (ABC) standard score was used as a composite measure of adaptive functioning summarized across Communication, Daily Living Skills, and Socialization domains. The Communication and Daily Living Skills domain standard scores were used to account for real-world communication and daily living skills and determine whether lower concordance was associated with lower adaptive functioning. Concurrent validity with other measures of adaptive skills is good, and internal consistency ranges from .61-.91 (Sparrow et al., 2005).

Social Responsiveness Scale, Second Edition

Social functioning and restricted, repetitive behaviors were measured using the parent-report Social Responsiveness Scale, Second Edition (SRS-2; Constantino & Gruber, 2012). The SRS-2 is a 65-item scale with internal consistency ranging from .95-.97 (Constantino et al., 2000) and good agreement with similar assessments (Constantino & Gruber, 2012). The SRS-2 total T-score was used in analyses as a measure of autistic traits.

Behavior Rating Inventory of Executive Function

Parents completed the Behavior Rating Inventory of Executive Function (BRIEF; Gioia, Isquith, Guy, & Kenworthy, 2000). The BRIEF is an 86-item scale with good content and construct validity and high internal consistency (.80-.98; Gioia et al., 2000). We included the BRIEF Monitor subscale (T-score) in correlational analyses to account for the influence of youth self-monitoring on pubertal insight.

Statistical Analysis

Given that two PDS items are specific to sex-assigned-at-birth, all PDS analyses were conducted separately for males and females.

Sample characterization

Multivariate ANOVAs were conducted by sex and diagnostic group to test for differences in age, DAS-II GCA, and Vineland-II ABC scores.

PDS concordance

As noted, three methods were employed to examine the degree of parent-youth concordance. First, we calculated a PDS Discrepancy Score (PDS-Diff) by standardizing PDS parent and PDS youth scores (converting scores to z-scores based on sex and diagnostic group means), then subtracting self-report from parent-report scores (PDSZ parent – PDSZ self). PDS-Diff was thus a measure of parent-youth disagreement. Standardized discrepancy scores have been shown to be superior to unstandardized discrepancies, as they enhance interpretability of scores by placing measures on the same scale and more consistently estimate informant discrepancies and characteristics (De Los Reyes & Kazdin, 2004). Difference scores provide insight into the level and direction of total score discrepancies between raters (Youngstrom et al., 2000). Negative difference scores indicate that youth rated themselves as more mature than their parents and positive scores indicate that parents rated their children as more mature. Due to the quasi-continuous nature of the PDS, ANCOVA with age as a covariate was used to examine diagnostic group differences in PDS-Diff (separately by sex).

Second, we calculated D2 in order to better account for item-level differences between parents and youth. Previous research indicates that D2 is sensitive to the level of overall differences, shape of profile responses, and dispersion of responses, thereby providing unique information that is not fully captured by total score concordance (Walker & Meehl, 1998; Youngstrom et al., 2000). To calculate D2 we summed the squared differences between item scores provided by each youth and their parent. For example, if a parent reported “1” on the growth spurt item and the youth reported 3, the discrepancy for that item would be 4 (3 – 1 = 2, 22 = 4). All item discrepancies were then summed for each youth for the total D2 score. ANCOVA with age as a covariate was used to examine diagnostic group differences in PDS D2 (separately by sex).

Third, we examined concordance between informants based on separate adrenal and gonadal processes as a measure of parent-youth agreement. Due to the ordinal nature of PDS gonadal and adrenal scores, weighted kappas were calculated by sex and diagnostic group to examine concordance for adrenal and gonadal maturation.

Correlations

To understand what factors relate to parent youth agreement/disagreement, Spearman correlations were conducted between PDS-Diff and D2 with domains hypothesized to relate to self-perception and functional independence (Cummins et al., in press; Pugliese et al., 2016): intellectual functioning (DAS-II GCA), self-care and communication (Vineland-II Daily Living Skills, Communication), autistic traits (SRS-Total), and self-awareness/monitoring (BRIEF Monitor subscale). Correlations were only conducted if PDS-Diff and D2 scores significantly differed by diagnostic group.

Results

Diagnostic Group and Sex Characteristics

Item-level PDS data were missing from 2.2% of the sample that met inclusionary criteria and had parent-report and self-report ratings (1 TD male, 3 ASD females). Missing data were from self-report forms and from items assessing sex-specific aspects of puberty. Females with ASD who had missing data had qualitatively lower adaptive scores relative to group means (mean Vineland-II ABC=72.7, range 62–85). Cases with missing data were excluded.

IQ, adaptive, and PDS scores, as well as demographic data and group comparisons are displayed in Tables 1 and 2. This sample was mostly white (74.1%) and non-Hispanic (68.6%). Youth with ASD had significantly lower IQ scores and Vineland-II ABC scores relative to TD youth but there were no significant sex differences for GCA or Vineland-II ABC scores collapsed across diagnosis. Parent-report and self-report PDS scores significantly correlated with age in all sex and diagnostic groups (ρ>.75, p<.001).

Table 1.

Demographic Information

ASD Females ASD Males TD Females TD Males
Race/Ethnicity (N)
Total 37 58 41 49
Hispanic/Latinx 6 17 16 15
White 28 40 30 39
Black 2 4 5 2
Asian 0 2 4 4
Multiracial 5 11 2 3
Unknown/Other 2 1 0 1
Household Income (N)
$75,000 or Less 6 14 10 5
$75,001-100,000 3 8 6 9
$100,001-150,000 4 8 5 7
Over $150,000 5 8 6 9
Unknown 19 20 20 20
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Note: ASD=autism spectrum disorder; TD=typically developing

Table 2.

Participant Characteristics

Age
 DAS-II GCA
 Vineland-II ABC
M SD Range M SD Range M SD Range
ASD Females (N = 37) 11.92 2.47 8–16 99.03 20.73 71–156 73.69 11.28 55–104
ASD Males (N = 58) 12.57 2.98 8–17 100.66 15.10 71–139 71.29 9.07 56–97
TD Females (N = 41) 12.34 3.21 8–17 109.66 14.11 83–142 96.76 11.67 76–129
TD Males (N = 49) 12.71 2.94 8–17 112.73 15.50 79–141 95.92 11.90 74–126
F
 p
 η2p
 F
 p
 η2p
 F
 p
 η2p
Group Comparison 2.14 .15 .013 21.27 <.001 .115 192.97 <.001 .542
Sex Comparison 0.67 .42 .004 1.21 .27 .007 0.34 .56 .002
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Note: ASD=autism spectrum disorder, TD=typically developing, GCA=DAS-II General Conceptual Ability, ABC=Vineland-II Adaptive Behavior Composite

Concordance

PDS difference scores

There were no significant diagnostic group differences in PDS-Diff for females (F(1,76)<0.01, p=.99, η2p<.001) or for males (F(1,105)=0.001, p=.98, η2p<.001). The effect of age was not significant for females (F(1,76)=0.06, p=.81, η2p=.001) or for males (F(1,105)=0.30, p=.59, η2p=.003). See Figure 1 and Table 3 for PDS and PDS-Diff scores by group and sex. Two outliers were identified (falling greater than 2.5 standard deviations above sex and diagnostic group means); PDS-Diff results remained consistent when these subjects were removed from analyses.

Figure 1.

Figure 1.

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PDS-Diff scores across age by sex and diagnostic group. Outliers are marked with an asterisk.

Table 3.

Pubertal Development Scale Scores

Parent Report
 Self Report
 Standardized PDS Difference Score
 D2
M SD Range M SD Range M SD Range M SD Range
ASD Females (N = 37) 2.50 0.92 1.00–4.00 2.38 0.96 1.00–4.00 0.00 0.39 −0.70–1.61 2.19 2.97 0–18
ASD Males (N = 58) 2.24 0.94 1.00–4.00 2.13 0.73 1.00–3.80 0.00 0.58 −1.41–1.51 3.36 3.83 0–15
TD Females (N = 41) 2.49 1.07 1.00–4.00 2.48 1.10 1.00–4.00 0.01 0.35 −0.72–0.76 2.02 2.25 0–8
TD Males (N = 49) 2.10 0.81 1.00–3.60 2.13 0.82 1.00–3.80 0.00 0.42 −0.96–0.80 1.98 1.52 0–6
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Note: ASD=autism spectrum disorder; TD=typically developing

D2 analyses

There were no significant diagnostic group differences in D2 for females (F(1,76)=0.08, p=.78, η2p=.001). For males, the ASD group demonstrated significantly greater D2 than TD youth (F(1,105)=5.52, p=.02, η2p=.050). The effect of age was not significant for females (F(1,76)=0.03, p=.87, η2p<.001) or males (F(1,105)=0.02, p=.90, η2p<.001). See Figure 2 and Table 3 for PDS D2 scores. Several D2 outliers were identified (falling greater than 2.5 standard deviations above sex and group means); results remained consistent when these subjects were removed from analyses.

Figure 2.

Figure 2.

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D2 scores across age by sex and diagnostic group. Outliers are marked with an asterisk.

Kappas

For adrenal maturation, parent-youth agreement was substantial for ASD females and TD females (ASD κ=.70, TD κ=.76) as well as TD males (κ=.68). However, parent-youth agreement was moderate for males with ASD (κ=.48). For gonadal development, females with ASD and TD females demonstrated high levels of agreement with their parents (ASD κ=.80, TD κ=.84). TD males had substantial agreement with their parents (κ=.69), while males with ASD had moderate agreement (κ=.55).

Factors Related to Concordance

No correlations were conducted with PDS-Diff scores given the lack of significant diagnostic group differences in concordance. For D2, none of the correlations were significant for autistic males (p>.07) in analyses with and without inclusion of outliers. Among autistic females, D2 scores approached significance with GCA only in analyses including outliers, with reduced agreement (higher D2 scores) associated with lower intellectual functioning (ρ=−.32, p=.05).

Discussion

This study examined the PDS in a sample of autistic girls and boys compared to TD youth ages 8–17. We examined concordance between parent-youth ratings for total PDS scores using several methods (to highlight different aspects of agreement) and based on adrenal and gonadal maturation (to highlight separable aspects of puberty). Our findings indicate substantial-to-moderate parent-youth concordance across diagnostic groups and sex-assigned-at-birth when considering differences in total PDS scores. We then conducted D2 analyses to provide a more nuanced understanding by capturing the dispersion of item-level responses not included in comparisons of overall PDS scores; adrenal and gonadal analyses similarly provided insight into different processes that underlie pubertal development. Results of these analyses revealed that autistic males had greater item-level discrepancies with their parents relative to TD males and had lowest (moderate) agreement for gonadal and adrenal aspects of pubertal development.

Lower item-level parent-youth concordance among autistic males tracks with one of the few studies comparing parent and youth ratings of pubertal measurement in ASD. Corbett et al. (2019) observed that parents of autistic youth had a tendency to underestimate pubertal stage, most notably among males. These findings, combined with our findings, are consistent with evidence that parents of autistic males may underestimate their child’s sexual experiences and knowledge (Dewinter et al., 2016; Liddon et al., 2013). However, it is equally possible that autistic males have reduced insight into their own pubertal progression. Indeed, Corbett et al. (2019) also observed that males overestimated their Tanner stage, regardless of diagnostic group. The cause of significant item-level discrepancies between autistic male youth and their parents in the current study is unclear; it will thus be informative to further explore interactions between autistic males and their parents to determine factors that contribute to concordance on ratings of pubertal progression.

It may also be helpful to investigate the role of sexuality education in contributing to parent-youth report concordance. Youth with ASD often receive less formal and informal sexuality education than their TD peers (Ballan, 2012; Holmes & Himle, 2014). There is evidence that disparities in education are associated with misperceptions that autistic individuals are asexual (Kellaher, 2015; Pescora et al., 2016) and by parental avoidance or hesitancy around providing sexuality education (Sedgewick et al., 2018). Even when autistic youth receive standard sexual education, they may not develop the same level of awareness as TD youth, and they are more likely to rely on internet and television sources (Brown-Lavoie et al., 2014; Hannah & Stagg, 2016). It is not clear whether there are sex differences in sexuality education and parental involvement among autistic youth. However, in TD youth there is evidence that parents may be more likely to discuss and monitor aspects of pubertal development with their daughters (e.g., teaching and assisting with care around menstruation), while social taboos may limit the discussion and degree of monitoring of aspects of pubertal development with their sons (e.g., semenarche; Frankel, 2002; Holmes et al., 2019). Increased parental discussion and monitoring among girls, particularly related to menstrual hygiene (Cridland et al., 2014; Cummins et al., in press), may facilitate greater parental awareness of indices of adrenal maturation (pubic/body hair, skin changes), which are less overt than gonadal indicators easily observed in both sexes (growth spurt, voice change, facial hair). We did not collect data on the educational experiences and parental involvement in the care of youth in our sample, and future research should explore the role of education in influencing perceptions of pubertal development.

To probe factors related to parent-youth concordance, we conducted correlations between D2 scores and measures related to youth insight and functional independence. Interestingly, no correlations were significant for males. Higher IQ was significantly related to greater parent-youth alignment across PDS items in females with ASD, though this was only statistically significant in analyses including outliers and is thus a tentative finding. While parental education and support may increase awareness of pubertal progression in some girls (resulting in greater parent-youth concordance), it is possible that a lack of educational resources may be particularly impactful for girls with lower intellectual/verbal abilities (Cummins et al., in press). Future research is necessary to understand the interplay among ASD symptoms, pubertal insight, and intellectual functioning, particularly in a sample with greater representation of the full range of intellectual and adaptive functioning.

Together, our findings add to previous studies using the PDS, indicating that both self-report and parent-report forms are feasible in ASD across a wide age range. Measuring puberty is becoming increasingly important in understanding developmental trajectories of ASD given evidence of differences in pubertal hormone concentrations (Lutchmaya et al., 2002; Majewska et al., 2014) and possibly altered timing of menarche in ASD (Hergüner & Hergüner, 2016; Whitehouse et al., 2011). Several different methods have been used to assess puberty across studies, and it is thus important to characterize the utility of different pubertal measures. Though hormonal measures or physical examination may be preferable when greater accuracy and precision are a priority, comparing youth and parent reports provides valuable insight into youth experiences that may be missed otherwise (Kaurin et al., 2016; Keith et al., 2019). Discrepancies between youth and parent ratings have traditionally been viewed as “error variance” or problematic, but there is compelling evidence that the degree of rater agreement may reveal important information about individual perceptions and environmental influences (De Los Reyes & Kazdin, 2005; Kaurin et al., 2016). For example, there is evidence in TD youth that self-report PDS ratings relate to self-esteem and body image (Dorn et al., 2006), factors that have not been fully explored in relation to puberty in ASD. Although the PDS does not measure autistic youth’s experiences of their bodies directly, the PDS does provide insight into youth perceptions and awareness of the physical changes associated with puberty. Thus, the PDS is a valuable tool when research questions are focused on understanding parent and/or youth perspectives.

At a practical level, the PDS is also an economical and easily administered measure that may be preferable over physically-based measures for specific populations of autistic youth in some research and clinical settings. There is evidence that autistic youth have been amenable to physical examination of pubertal characteristics (Corbett et al., 2019). However, some autistic youth experience greater anxiety/negative emotions toward medical procedures, such as physical examinations or blood draws, and may decline to participate in research as a result (Davit et al., 2011; Evans et al., 2005; MacNeil et al., 2009). The PDS may be a consideration for autistic youth with medically-based anxiety if other supports are not feasible or if they would otherwise be excluded from research. The PDS may also be an important tool for transgender autistic youth given elevated rates of gender dysphoria in autistic individuals (Hisle-Gorman et al., 2019; Strang et al., 2014). Individuals with gender dysphoria, who experience incongruence between their sex-assigned-at-birth and gender identity, have reported greater discomfort during physical examinations due to elevated distress around gender and sex-related physical characteristics (Coleman et al., 2012). Together, the findings of this study offer important initial support for the self- and parent-report PDS, but additional research is needed to further understand the advantages of this measure in ASD.

Limitations and Future Directions

As noted, our sample is not representative of all youth with ASD. We did not include youth with IQ scores below 70 and cannot draw conclusions about the utility of this measure in youth with lower cognitive/language abilities. There is evidence that ratings of puberty differ based on race and/or ethnicity (Ramnitz & Lodish, 2013), yet we did not have sufficient racial and/or ethnic diversity to include these variables in our analyses. Given the over-occurrence of gender variance in ASD, future studies should also include assessment of gender diversity, including self-report and parent-report differences in this population (Strang et al., 2014).

We also did not include hormonal measures or physical examination in our study, and thus cannot determine whether parents or youth are more aligned with biological or clinician ratings of puberty. Although there is some evidence that the parent-report PDS may lack the precision of other measures in ASD (Corbett et al., 2019), future research should include an examination of the PDS self-report and parent-report alongside biological and physical measures to determine the accuracy and concurrent validity of the PDS in ASD. Direct comparisons of different measures will also further elucidate the unique benefits of each form of measurement to guide research and clinical practice.

Perhaps as important as comparison with biological measures, future research should also explore factors that contribute to parent and youth PDS ratings and concordance. In youth with ASD, parental communication about sexuality (including puberty) is moderated by youth and family characteristics (e.g., IQ, ethnicity, symptom severity; Holmes, Himle, & Strassberg, 2016; Holmes, Strassberg, & Himle, 2019), factors that may also play a role in parent-youth concordance regarding pubertal progression. It is thus also important to consider the influence of parent characteristics (e.g., parental autistic traits that may impact communication around puberty) and education on perceptions of their child’s pubertal development. Future research should examine how the self-report PDS corresponds to aspects of self-perception in autistic males and females, levels of hormones (including cortisol), whether family and environmental factors influence concordance (e.g., education, race/ethnicity, parent autistic symptoms, etc.), and if and how differences in pubertal perception impact parent-youth communication regarding puberty and/or sexuality.

Conclusion

We examined parent-report and self-report PDS in males and females with ASD across the age range of puberty. Diagnostic group differences emerged among autistic males, who had the greatest item-level discrepancies and lowest agreement in terms of adrenal and gonadal maturation. The PDS may be a useful measure of pubertal development, lending insight into youth perceptions and parent-youth agreement on pubertal progression.

Supplementary Material

1

Highlights.

  • We used the Pubertal Development Scale (PDS) to compare youth and parent perceptions of pubertal development in autistic and typically developing (TD) youth.

  • There were no differences in parent-youth agreement between autistic and TD youth for overall ratings of puberty.

  • Autistic males and their parents significantly differed on item-level responses and when rating physical manifestations of different hormonal processes during puberty.

  • The PDS may be a useful measure in autism for understanding youth and parent perceptions of pubertal progression.

Acknowledgements

The authors thank the participants and their families for their engagement in this project. We would also like to thank the clinicians and coordinators at each data collection site, including support from Susan Bookheimer and Mirella Dapretto (University of California Los Angeles), Charles Nelson (Boston Children’s Hospital), James McPartland (Yale University), and Raphael Bernier (Seattle Children’s Research Institute). This study was supported by the NIH (RO1 MH100028, Pelphrey).

Footnotes

Conflicts of Interest: The authors report no conflicts of interest.

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