Reliability, Validity and Acceptability of the PEDI-CAT with ASD Scales for Australian Children and Youth on the Autism Spectrum.

PURPOSE: The PEDI-CAT (ASD) is used to assess functioning of children and youth on the autism spectrum; however, current psychometric evidence is limited. This study aimed to explore the reliability, validity and acceptability of the PEDI-CAT (ASD) using a large Australian sample. METHODS: Caregivers of 134 children and youth on the spectrum participated in clinical assessments involving the administration of the PEDI-CAT (ASD), Vineland-3, PEDI-CAT (Original) and a feedback instrument. The PEDI-CAT (ASD) content was compared to the ICF Core Sets for ASD to summarize areas of functioning assessed and relevance to autism. RESULTS: The PEDI-CAT (ASD) demonstrated good to excellent internal consistency and test-re-test reliability. Parallel forms reliability with the PEDI-CAT (Original) included significant correlations (good to excellent), however, t-tests showed significantly higher Social/Cognitive scores for the ASD version. Convergent validity results demonstrated that most PEDI-CAT (ASD) and Vineland-3 core domains were significantly correlated (poor to good). Content analysis revealed that the PEDI-CAT (ASD) covered less than half of the ICF Core Sets for ASD (mostly Activities and Participation codes). Just over half the codes assigned to the PEDI-CAT (ASD) were represented in the ICF Core Sets for ASD. Feedback on the acceptability of the measure was mixed, but overall was it was considered user-friendly and efficient. CONCLUSION: The PEDI-CAT (ASD) had adequate psychometric properties and acceptability as a measure of Activities and Participation codes. However, it lacks comprehensiveness and relevance when compared to the ICF Core Sets for ASD and has the potential to overestimate functioning.

Community perspectives on the appropriateness and importance of support goals for young autistic children.

LAY ABSTRACT: Researchers do not know much about what autistic adults, parents and professionals think about support goals for young autistic children. People's views of support goals might also be influenced by their beliefs about early support more generally. This survey involved 87 autistic adults, 159 parents of autistic children and 80 clinical professionals living in New Zealand and Australia. We asked participants questions about themselves and what they thought about early support for young autistic children in general. We then asked participants to rate whether different support goals were appropriate for young autistic children and, if they were appropriate, to rate their level of priority. We found that autistic adults, parents and professionals all rated goals about the adult changing to better support the child, reducing and replacing harmful behaviours and improving the child's quality of life as the highest priorities. They all rated goals about autism characteristics, play skills and academic skills as the lowest priorities. Compared to parents and/or professionals, autistic adults gave lower priority ratings for play skills, autism characteristics and participation goals. Autistic adults were also more likely to rate goals related to play skills and autism characteristics as inappropriate. While these three participant groups generally agreed on the order of priority of early support goals for young autistic children, autistic adults found goals related to autism characteristics, play and/or participation to be an even lower priority and less appropriate than parents and professionals.

Potential role for immune-related genes in autism spectrum disorders: Evidence from genome-wide association meta-analysis of autistic traits.

LAY ABSTRACT: Autism spectrum disorders are complex, with a strong genetic basis. Genetic research in autism spectrum disorders is limited by the fact that these disorders are largely heterogeneous so that patients are variable in their clinical presentations. To address this limitation, we investigated the genetics of individual dimensions of the autism spectrum disorder phenotypes, or autistic-like traits. These autistic-like traits are continuous variations in autistic behaviours that occur in the general population. Therefore, we meta-analysed data from four different population cohorts in which autistic-like traits were measured. We performed a set of genetic analyses to identify common variants for autistic-like traits, understand how these variants related to autism spectrum disorders, and how they contribute to neurobiological processes. Our results showed genetic associations with specific autistic-like traits and a link to the immune system. We offer an example of the potential to use a dimensional approach when dealing with heterogeneous, complex disorder like autism spectrum disorder. Decomposing the complex autism spectrum disorder phenotype in its core features can inform on the specific biology of these features which is likely to account to clinical variability in patients.

Content validation of common measures of functioning for young children against the International Classification of Functioning, Disability and Health and Code and Core Sets relevant to neurodevelopmental conditions.

LAY ABSTRACT: Young children who have developmental delay, autism, or other neurodevelopmental conditions can have difficulties doing things in different areas of their life. What they can and cannot do is called their level of functioning. There are lots of assessment measures that aim to assess functioning. But, we are not sure if these measures assess all the things we need to know about these children's functioning. Other research has identified lists of items (codes) that need to be assessed to understand functioning for young children with different neurodevelopmental conditions fully. These lists include body functions (the things a child's body or brain can do), activities and participation (the activities and tasks a child does) and environmental factors (parts of the environment that can influence functioning). In this study, we looked at the items from these lists assessed by different functioning measures to see how they compared to what should be assessed. The measures that we looked at covered 21%-57% of all the codes and 19%-63% of the codes for lists specific to different conditions. Most of the measures focused on activity and participation codes, and they rarely assessed environmental factors. Knowing which codes and how much of the lists the measures assess can help researchers, clinicians and policymakers to choose measures that are more appropriate for young children with neurodevelopmental conditions.

Toward better characterization of restricted and unusual interests in youth with autism.

LAY ABSTRACT: Despite being highly prevalent among people with autism, restricted and unusual interests remain under-researched and poorly understood. This article confirms that restricted interests are very frequent and varied among children and adolescents with autism. It also further extends current knowledge in this area by characterizing the relationship between the presence, number, and type of restricted interests with chronological age, sex, cognitive functioning, and social and communication symptoms.

The effects of JASPER intervention for children with autism spectrum disorder: A systematic review.

Naturalistic developmental behavioural interventions are promising approaches for young children with, or suspected of having, autism spectrum disorder. Joint attention, symbolic play, engagement and regulation intervention (JASPER) is a well-researched naturalistic developmental behavioural intervention but, to date, no reviews have specifically evaluated its effects. This systematic literature review examined the effects of JASPER intervention and its components on child, parent and educator outcomes. Of the 96 articles screened, 19 were eligible for inclusion in the review. Most studies found that children who received JASPER intervention showed significantly greater improvements in at least one outcome related to child joint attention, joint engagement, play skills and language skills compared to the comparison group. Implementation outcomes for parents and educators were generally positive. There were no consistent predictors or mediators of treatment effects. None of the studies met all of the quality indicators outlined by the Council of Exceptional Children, and the majority of outcome measures were classified as proximal. Overall, JASPER intervention appears promising in improving child outcomes directly targeted during treatment. More research is needed to determine whether it is also effective in improving a wider range of outcomes for children with autism spectrum disorder.Lay abstractInterventions which are delivered in natural contexts and use both developmental and behavioural techniques may be helpful for children with, or suspected of having, autism spectrum disorder. Joint attention, symbolic play, engagement and regulation (JASPER) is a type of intervention, which falls under this category. Although several studies have examined the effects of JASPER, this has not yet been summarised in a review. This systematic literature review examined the effects of JASPER intervention, and the techniques that make up JASPER, on child, parent and educator outcomes. We screened 96 articles and, of these, 19 were included in the review. Most studies found that children who received JASPER intervention showed significantly greater improvements in at least one outcome related to child joint attention, joint engagement, play skills, and language skills compared to children who did not receive JASPER intervention. Parents and educators were mostly able to use the JASPER techniques. There were no consistent child, parent, teacher or treatment characteristics that influenced the effects of the JASPER intervention. None of the studies met all of the indicators of being a good quality study outlined by the Council of Exceptional Children. Overall, JASPER intervention appears promising in improving child outcomes directly targeted during treatment. More research is needed to determine whether it is also effective in improving a wider range of outcomes for children with autism spectrum disorder.

An investigation of adherence to best practice guidelines for autism diagnosis in New Zealand.

LAY ABSTRACT: Many clinicians in New Zealand do not follow guidelines for best practice in autism diagnosis. In this study, we investigated the processes that health professionals in New Zealand follow when diagnosing autistic children and adults. We asked 117 health professionals from a range of services and regions in New Zealand, how they identify and diagnose autism. We found that there are differences in the way that clinicians in New Zealand diagnose autism. We identified areas in which autism diagnosis in New Zealand could be improved, for example, by establishing more services to diagnose autism in adolescents and adults, and providing more consistent support after a person is diagnosed with autism. These findings will help to improve autism diagnosis in New Zealand.

Performance of the Autism Observation Scale for Infants with community-ascertained infants showing early signs of autism.

LAY ABSTRACT: We investigated whether a commonly used research assessment - the Autism Observation Scale for Infants (AOSI) - accurately measures autism behaviours among infants showing early signs of autism identified within the community. The AOSI is often included in studies tracking the development of infants at increased likelihood of autism, such as the infant siblings of diagnosed children. However, the suitability of this measure has not previously been tested with community-referred infants. We administered the AOSI with infants when aged 9 to 14 months and again 6 months later. Our researchers - independent of the AOSI development team and newly trained on this measure - were able to administer the brief interactive assessment and score it accurately. The infants' AOSI scores were linked to their scores on other established and validated clinical assessments, particularly at the second visit when average age was 18 months. Stronger correspondence of AOSI and other scores at this second visit suggests early autism behaviours are better established and more consistent by 18 months of age, even though these infants showed clear enough signs of possible autism to prompt referral to our study around 12 months of age. However, the moderate association of AOSI scores over time suggests that, like infant siblings - who mostly do not develop autism - community-identified infants showing early signs may also have variable developmental pathways in early life.

The misnomer of 'high functioning autism': Intelligence is an imprecise predictor of functional abilities at diagnosis.

'High functioning autism' is a term often used for individuals with autism spectrum disorder without an intellectual disability. Over time, this term has become synonymous with expectations of greater functional skills and better long-term outcomes, despite contradictory clinical observations. This study investigated the relationship between adaptive behaviour, cognitive estimates (intelligence quotient) and age at diagnosis in autism spectrum disorder. Participants (n = 2225, 1-18 years of age) were notified at diagnosis to a prospective register and grouped by presence (n = 1041) or absence (n = 1184) of intellectual disability. Functional abilities were reported using the Vineland Adaptive Behaviour Scales. Regression models suggested that intelligence quotient was a weak predictor of Vineland Adaptive Behaviour Scales after controlling for sex. Whereas the intellectual disability group's adaptive behaviour estimates were close to reported intelligence quotients, Vineland Adaptive Behaviour Scales scores fell significantly below intelligence quotients for children without intellectual disability. The gap between intelligence quotient and Vineland Adaptive Behaviour Scales scores remained large with increasing age at diagnosis for all children. These data indicate that estimates from intelligence quotient alone are an imprecise proxy for functional abilities when diagnosing autism spectrum disorder, particularly for those without intellectual disability. We argue that 'high functioning autism' is an inaccurate clinical descriptor when based solely on intelligence quotient demarcations and this term should be abandoned in research and clinical practice.

Obesity and associated factors in youth with an autism spectrum disorder.

Weight status on children and youth with autism spectrum disorder is limited. We examined the prevalence of overweight/obesity in children and youth with autism spectrum disorder, and associations between weight status and range of factors. Children and youth with autism spectrum disorder aged 2-16 years (n = 208) and their parents participated in this study. Body mass index was calculated using the Centers for Disease Control and Prevention growth charts and the International Obesity Task Force body mass index cut-offs. The Autism Diagnostic Observation Schedule was administered. Parents completed questionnaires about socio-demographics, diagnosed comorbidities, sleep disturbances, social functioning and medication of youth with autism spectrum disorder. The prevalence of overweight/obesity in participants with autism spectrum disorder was 35%. One quarter of obese children and youth (25.6%) had obese parents. There was a significant association between children and youth's body mass index and maternal body mass index (r = 0.25, n = 199, p < 0.001). The gender and age, parental education, family income, ethnicity, autism spectrum disorder severity, social functioning, psychotropic and complementary medication use of children and youth with autism spectrum disorder were not statistically associated with their weight status. Findings suggest the need for clinical settings to monitor weight status of children and youth with autism spectrum disorder in a bid to manage or prevent overweight/obesity in this population. Incorporating a family system approach to influence health behaviours among children and youth with autism spectrum disorder especially for specific weight interventions is warranted and should be further explored.

Sexually dimorphic facial features vary according to level of autistic-like traits in the general population.

BACKGROUND: In a recent study, Bejerot et al. observed that several physical features (including faces) of individuals with an autism spectrum disorder (ASD) were more androgynous than those of their typically developed counterparts, suggesting that ASD may be understood as a 'gender defiant' disorder. These findings are difficult to reconcile with the hypermasculinisation account, which proposes that ASD may be an exaggerated form of cognitive and biological masculinity. The current study extended these data by first identifying six facial features that best distinguished males and females from the general population and then examining these features in typically developing groups selected for high and low levels of autistic-like traits. METHODS: In study 1, three-dimensional (3D) facial images were collected from 208 young adult males and females recruited from the general population. Twenty-three facial distances were measured from these images and a gender classification and scoring algorithm was employed to identify a set of six facial features that most effectively distinguished male from female faces. In study 2, measurements of these six features were compared for groups of young adults selected for high (n = 46) or low (n = 66) levels of autistic-like traits. RESULTS: For each sex, four of the six sexually dimorphic facial distances significantly differentiated participants with high levels of autistic-like traits from those with low trait levels. All four features were less masculinised for high-trait males compared to low-trait males. Three of four features were less feminised for high-trait females compared to low-trait females. One feature was, however, not consistent with the general pattern of findings and was more feminised among females who reported more autistic-like traits. Based on the four significantly different facial distances for each sex, discriminant function analysis correctly classified 89.7% of the males and 88.9% of the females into their respective high- and low-trait groups. CONCLUSIONS: The current data provide support for Bejerot et al.'s androgyny account since males and females with high levels of autistic-like traits generally showed less sex-typical facial features than individuals with low levels of autistic-like traits.

Prevalence and risk factors for parent-reported recurrent otitis media during early childhood in the Western Australian Pregnancy Cohort (Raine) Study.

AIM: To describe the prevalence and risk factors of recurrent otitis media (rOM) in an urban Australian population at 3 years of age. METHODS: Cross-sectional examination of prevalence and risk factors of rOM in 2280 participants from the Raine Study enrolled from public and private hospitals in Perth, Western Australia, between 1989 and 1991. Parental report questionnaires at 3 years of age were used for rOM identification, with secondary confirmation by otoscopic examination at 1, 2 or 3 years of age. RESULTS: The prevalence of parent-reported rOM was 26.8% (611/2280) and 5.5% (125/2280) for severe rOM in the Study. Independent associations were found between rOM and the presence of older siblings, attendance at day care and the introduction of other milk products at ≤4 months of age. Independent associations for severe rOM were the presence of allergies and attendance at day care. CONCLUSIONS: Prevalence rates of rOM within the Raine Study children are similar to a number of other known cohorts. Parity, presence of allergies, attendance at day care and introduction of other milk products at ≤4 months are highlighted as specific risk factors for rOM in this population and presence of allergies and attendance at day care being risk factors for severe rOM. Diagnosis of rOM by parent report and the delay between data collection and reporting are limitations of this study. However, as there is very limited data on OM in urban, non-Indigenous Australian children, this study improves our understanding of OM for this group.

Perinatal testosterone exposure and autistic-like traits in the general population: a longitudinal pregnancy-cohort study.

BACKGROUND: Increased prenatal testosterone exposure has been hypothesized as a mechanism underlying autism spectrum disorders (ASD). However, no studies have prospectively measured prenatal testosterone exposure and ASD. The current study sought to determine whether testosterone concentrations in umbilical cord blood are associated with a clinical diagnosis of ASD in a small number of children and with autistic-like traits in the general population. METHODS: Umbilical cord blood was collected from 707 children. Samples were analyzed for total (TT) and bioavailable (BioT) testosterone concentrations. Parent report indicated that five individuals had a clinical diagnosis of ASD. Those participants without a diagnosis were approached in early adulthood to complete the Autism-Spectrum Quotient (AQ), a self-report measure of autistic-like traits, with 184 males (M = 20.10 years; SD= 0.65 years) and 190 females (M = 19.92 years; SD=0.68 years) providing data. RESULTS: The BioT and TT concentrations of the five children diagnosed with ASD were within one standard-deviation of the sex-specific means. Spearman's rank-order coefficients revealed no significant correlations between TT levels and scores on any AQ scale among males (rho range: -.01 to .06) or females (rho value range: -.07 to .01). There was also no significant association between BioT or TT concentrations and AQ scores among males (rho value range: -.07 to .08) or females (rho value range: -.06 to .12). Males were more likely than females to have 'high' scores (upper decile) on the AQ scale relating pattern and detail processing. However, the likelihood of a high score on this scale was unrelated to BioT and TT concentrations in both males and females. CONCLUSIONS: These findings indicate that testosterone concentrations from umbilical cord blood are unrelated to autistic-like traits in the general population. However, the findings do not exclude an association between testosterone exposure in early intrauterine life and ASD.