Publications by authors named "Josephine Barbaro"

30 Publications

  • Page 1 of 1

Caregiver Psychological Distress Predicts Temperament and Social-Emotional Outcomes in Infants with Autism Traits.

Res Child Adolesc Psychopathol 2021 Jul 3. Epub 2021 Jul 3.

Department of Psychology and Counseling, School of Psychology and Public Health, La Trobe University, Melbourne, Australia.

Child temperament and caregiver psychological distress have been independently associated with social-emotional difficulties among individuals with autism. However, the interrelationship among these risk factors has rarely been investigated. We explored the reciprocal interplay between child temperament (surgency, negative affectivity, and self-regulation) and caregiver psychological distress in the development of child internalizing and externalizing symptoms, in a cohort of 103 infants showing early autism traits. Caregivers completed questionnaires when children were aged around 12-months (Time 1 [T1]), 18-months (Time 2 [T2]), and 24-months (Time 3 [T3]). Cross-lagged path models revealed a significant pathway from T1 caregiver psychological distress through lower T2 child self-regulation to subsequently greater T3 child internalizing symptoms. No such caregiver-driven pathway was evident through T2 child negative affectivity or in the prediction of T3 child externalizing symptoms. Further, no support was found for temperament-driven pathways through caregiver psychological distress to child social-emotional difficulties. Child surgency was mostly unrelated to caregiver psychological distress and social-emotional difficulties. These findings implicate the need to support the mental health of caregivers with an infant with autism traits in order to enhance the emotion regulation and social-emotional development of their infants.
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http://dx.doi.org/10.1007/s10802-021-00838-5DOI Listing
July 2021

Implementing and evaluating Social Attention and Communication Surveillance (SACS) to prospectively identify autism in very young children in Nepal.

Res Dev Disabil 2021 Aug 15;115:104013. Epub 2021 Jun 15.

Olga Tennison Autism Research Centre, School of Psychology and Public Health, La Trobe University, Kingsbury Drive, Bundoora, Melbourne, VIC, 3086, Australia. Electronic address:

Background: Although Autism Spectrum Disorder (ASD) can be identified as early as 12 months and diagnosed by 24 months, the mean age of diagnosis of ASD in Nepal is ∼58 months, with children missing the opportunity for early intervention.

Aims: This study implemented and evaluated a Nepali version of the Social Attention and Communication Surveillance (SACS-N) tool, to identify children between 11-30 months who are at "high likelihood" of ASD in a local community in Nepal.

Methods: Sixty Female Community Health Volunteers (FCHVs) were trained to monitor and identify the early signs of ASD using SACS-N.

Results: Overall, 1926 children were monitored with the SACS-N, with 11 children (0.57 %) referred for further assessments at 11-15 months (n = 4), 16-21 months (n = 4), and 22-30 months (n = 3). Of these children, 10 children had a developmental disorder, including ASD and Global Developmental Delay; no information was available on one child who migrated. Hence, the positive predictive value (PPV) of SACS-N for all developmental disorders was 100 %. Of seven children attending a gold standard diagnostic/ developmental assessment, three had ASD (43 % PPV for ASD). The estimated prevalence of ASD ranged between 0.16 % to 0.26 %.

Conclusion: Community-based developmental monitoring of ASD and other developmental delays by FCHVs is a feasible, cost-effective and sustainable approach to promoting early identification of ASD in Nepal. Further training and awareness of autism is needed for more accurate and increased referral rates using the SACS-N, including regular supervision of FCHVs.
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http://dx.doi.org/10.1016/j.ridd.2021.104013DOI Listing
August 2021

A Multistate Trial of an Early Surveillance Program for Autism Within General Practices in Australia.

Front Pediatr 2021 23;9:640359. Epub 2021 Apr 23.

Cooperative Research Centre for Living With Autism (Autism CRC), The University of Queensland, Indooroopilly, QLD, Australia.

The early detection of developmental conditions such as autism is vital to ensure children can access appropriate and timely evidence-based supports, services, and interventions. Children who have undetected developmental conditions early in life are more likely to develop later health, developmental, learning, and behavioral issues, which in turn can have a cumulative effect over the life course. The current protocol describes a multi-site, cluster randomized control trial comparing a developmental surveillance pathway for autism to usual care, using opportunistic visits to general practitioners (GPs). Units of randomization are GP clinics across two Australian states (New South Wales and Victoria), with thirty clinics within each state, each of which will aim to recruit approximately forty children aged between ~18- and 24-months, for a total of ~2,400 participants. Children will be randomized to two clusters; namely, an autism surveillance pathway (ASP) or surveillance as usual (SaU). The screening process for the ASP arm involves primary and secondary screenings for developmental concerns for autism, using both parent and GP reports and observations. Children in both arms who show signs of developmental concerns for autism will be offered a full developmental assessment by the research team at 24 months of age to determine the efficacy of developmental surveillance in successfully identifying children with autism. The trial is registered with ANZCTR (ACTRN12619001200178) and reporting of the trial results will be according to recommendations in the CONSORT Statement.
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http://dx.doi.org/10.3389/fped.2021.640359DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8102783PMC
April 2021

Changes in Knowledge on the Signs of Autism in Young Children (11-30 Months) among Female Community Health Volunteers in Nepal.

J Autism Dev Disord 2021 Mar 11. Epub 2021 Mar 11.

Olga Tennison Autism Research Centre, School of Psychology and Public Health, La Trobe University, Kingsbury Drive, Bundoora, Melbourne, VIC, 3086, Australia.

Nepalese Female Community Health Volunteers' (FCHVs) knowledge on social attention and communication development and the early signs of autism was evaluated before, immediately after, and 12-months following training on typical and atypical social-communicative development in infants/toddlers, early signs of autism, and monitoring of key "markers" of autism using Social Attention and Communication Surveillance. FCHVs (N = 60) significantly improved their knowledge about autism and reported increased perceived confidence in monitoring and referring young children at high likelihood of autism following training, which was sustained one year later. FCHVs also reported a positive impact of training on their work. These findings indicate the effectiveness of training in improving FCHVs' knowledge and perceived confidence to monitor and refer young children at high likelihood of autism.
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http://dx.doi.org/10.1007/s10803-021-04944-7DOI Listing
March 2021

A Comparison of Children Born Preterm and Full-Term on the Autism Spectrum in a Prospective Community Sample.

Front Neurol 2020 3;11:597505. Epub 2020 Dec 3.

Olga Tennison Autism Research Centre, School of Psychology and Public Health, La Trobe University, Melbourne, VIC, Australia.

Previous research suggests children diagnosed with autism spectrum disorder (ASD or "autism") born extremely and very preterm face substantially delayed development than their peers born full-term. Further, children born preterm are proposed to show a unique behavioral phenotype, which may overlap with characteristics of autism, making it difficult to disentangle their clinical presentation. To clarify the presentation of autism in children born preterm, this study examined differences in key indicators of child development (expressive language, receptive language, fine motor, and visual reception) and characteristics of autism (social affect and repetitive, restricted behaviors). One fifty-eight children (136 full-term, twenty-two preterm) diagnosed with autism, aged 22-34 months, were identified prospectively using the Social Attention and Communication Surveillance tools during community-based, developmental surveillance checks in the second year of life. Those identified at "high likelihood" of an autism diagnosis were administered the Mullen Scales of Early Learning and the Autism Diagnostic Observation Schedule. The children born preterm and full-term did not differ significantly in their fine motor, visual reception, expressive language, or receptive language skills. No significant differences in social affect and repetitive and restrictive behavior traits were found. The findings of this study differs from previous research where children diagnosed with autism born very or extremely preterm were developmentally delayed and had greater autistic traits than their term-born peers. These null findings may relate to the large proportion of children born moderate to late preterm in this sample. This study was unique in its use of a community-based, prospectively identified sample of children diagnosed with autism at an early age. It may be that children in these groups differ from clinic- and hospital-based samples, that potential differences emerge later in development, or that within the autism spectrum, children born preterm and full-term develop similarly. It was concluded that within the current sample, at 2 years of age, children diagnosed with autism born preterm are similar to their peers born full-term. Thus, when clinicians identify characteristics of autism in children born preterm, it is important to refer the child for a diagnostic assessment for autism.
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http://dx.doi.org/10.3389/fneur.2020.597505DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7744721PMC
December 2020

A Pilot Investigation of the Social Attention and Communication Surveillance (SACS) Tool for the Early Identification of Autism in Tianjin, China (SACS-C).

Front Neurol 2020 16;11:597790. Epub 2020 Nov 16.

Olga Tennison Autism Research Centre, School of Psychology and Public Health, La Trobe University, Melbourne, VIC, Australia.

Autism spectrum disorder (ASD) comprises difficulties in social communication and restrictive and repetitive behaviors. Despite an increased global prevalence, little remains known about early detection and diagnosis of autism in Mainland China. Our aim was to conduct a pilot investigation of the implementation of an Australian tool, Social Attention and Communication Surveillance (SACS), in Tianjin, China (SACS-C) by trained professionals to identify autism early compared to the Checklist for Autism in Toddlers-23 (CHAT-23) completed by parents and professionals. A total of 10,514 children were monitored across 61 Community Health Service Centres in six Tianjin districts on the SACS-C at 12, 18, and 24 months of age following a half-day training of 225 child health practitioners. Children deemed at "high likelihood" for autism on either the SACS, CHAT-23, or both, were referred for developmental assessments at the Tianjin Women and Children's Health Centre (TWCHC). A total of 87 children (0.8%) were identified at "high likelihood" on the SACS-C, of whom 57 (66%) were assessed for autism; 24 children were subsequently diagnosed with autism (42.1%), and the remaining 33 (57.9%) were diagnosed with developmental and/or language delays. The SACS-C had a positive predictive value (PPV) of 42.1%, a negative predictive value (NPV) of 99.8%, and sensitivity and specificity of 53.3 and 99.7%, respectively. Only 21 children were identified at "high risk" for autism on the CHAT-23 (0.2%), over four times fewer children than the SACS-C, with 14 children assessed for autism (66%); nine were diagnosed with autism (64.3%) and the remaining five children were diagnosed with developmental and/or language delays. The CHAT-23 had an overall PPV of 64.3%, NPV of 99.6%, sensitivity of 27.3%, and specificity of 99.9%. This was the first large-scale study identifying autism in 12-24-month-old children in China. We ascertained the feasibility of training community health practitioners to monitor infants and toddlers for the early signs of autism, and determined the effectiveness of their use of SACS-C which had a better balance between accuracy and sensitivity in detecting autism in contrast to the CHAT-23 which missed the majority of children with autism (72.7%) vs. the SACS-C (46.7%). Given the emphasis on identifying as many children with autism as possible in Mainland China, SACS-C was identified as the tool of choice by the TWCHC. However, more work is needed to improve the psychometric properties in using the SACS-C in Mainland China so that it is comparable to its use in Australia.
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http://dx.doi.org/10.3389/fneur.2020.597790DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7701138PMC
November 2020

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

Autism 2021 02 22;25(2):490-501. Epub 2020 Oct 22.

Telethon Kids Institute, University of Western Australia, Australia.

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 develop autism - community-identified infants showing early signs may also have variable developmental pathways in early life.
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http://dx.doi.org/10.1177/1362361320965397DOI Listing
February 2021

Development of a Web-Based Resource for Parents of Young Children Newly Diagnosed With Autism: Participatory Research Design.

JMIR Pediatr Parent 2020 Sep 30;3(2):e15786. Epub 2020 Sep 30.

Olga Tennison Autism Research Centre, La Trobe University, Melbourne, Australia.

Background: The internet provides an ideal avenue to share information, advice, and support regarding autism. However, many websites lack quality control and rarely provide a one-stop resource for families to access necessary, evidence-based information.

Objective: This study aims to use participatory action research (PAR) with end users (ie, parents) and clinicians to develop a web-based resource (Pathways Beyond Diagnosis) to improve timely access to quality, evidence-based information, and support for families after their child is diagnosed with autism.

Methods: The PAR approach involves 4 phases: (1) cooperative researcher-stakeholder planning, (2) cooperative researcher-stakeholder-based action, (3) stakeholder observation, and (4) cooperative researcher-stakeholder reflection. A total of 15 participants (parents, n=3; clinicians, n=9; and researchers, n=3) attended individual or group participatory design workshops. This was followed by the translation of knowledge and ideas generated during the workshops to produce mockups of webpages and content, rapid prototyping, and one-on-one consultations with end users to assess the usability of the website developed.

Results: A total of 3 participatory design workshops were held with the participants, each followed by a knowledge translation session. At the end of the PAR cycle, an alpha prototype of the website was built and a series of one-on-one end user consultation sessions were conducted. The PAR cycle revealed the importance of 6 key topic areas (understanding autism, accessing services, support, gaining funding, putting it all together, and looking into the future) associated with the time of diagnosis, which were incorporated into the beta version of the website.

Conclusions: The development of the Pathways Beyond Diagnosis website using PAR ensures that families have ready access to practical and evidence-based information following a young child's diagnosis. The website guides families to access relevant, reputable, and evidence-based information in addition to summarizing key challenges encountered after diagnosis (ie, grief, sharing the diagnosis) and the importance of self-care.
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http://dx.doi.org/10.2196/15786DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7557446PMC
September 2020

Parents' experiences of the service pathway to an autism diagnosis for their child: What predicts an early diagnosis in Australia?

Res Dev Disabil 2020 Aug 17;103:103689. Epub 2020 May 17.

Olga Tennison Autism Research Centre, School of Psychology and Public Health, La Trobe University, Australia.

Background: The early identification and diagnosis of autism is critical to ensure access to appropriate early intervention and support. Few studies have examined the association between potentially modifiable characteristics of the service system and timelier diagnosis.

Methods: An online survey was conducted to examine parental experiences of service pathways to an autism diagnosis for their child, and to identify child, family, and service level characteristics that predict the age and timeliness of diagnosis. Participants included 107 parents of children with autism who were diagnosed by 7 years of age and a smaller subgroup of 29 parents who were diagnosed after 7 years of age.

Results: Parents of younger children reported that, on average, it took approximately 12 months and 8 professional consultations to receive a confirmed diagnosis for their child. Parents of older children, as well as those who reported they were a sole caregiver, or were advised by professionals to 'wait and see', reported more time between first raising concerns and diagnosis.

Conclusions: The findings reiterate the importance of proactive professional responses to parental concerns. They also highlight the need for standardised screening and assessment and professional development and training to build capacity in the sector to deliver timely and accurate autism diagnoses.
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http://dx.doi.org/10.1016/j.ridd.2020.103689DOI Listing
August 2020

Study protocol for an evaluation of ASDetect - a Mobile application for the early detection of autism.

BMC Pediatr 2020 01 18;20(1):21. Epub 2020 Jan 18.

Olga Tennison Autism Research Centre, School of Psychology and Public Health. College of Science, Heath & Engineering. La Trobe University, Melbourne, Victoria, 3086, Australia.

Background: Autism Spectrum Conditions (ASC) can be reliably diagnosed by 24 months of age. However, despite the well-known benefits of early intervention, there is still a research-practice gap in the timely identification of ASC, particularly in low-resourced settings. The Social Attention and Communication Surveillance (SACS) tool, which assesses behavioural markers of autism between 12 to 24 months of age, has been implemented in Maternal and Child Health (MCH) settings, with excellent psychometric properties. ASDetect is a free mobile application based on the SACS, which is designed to meet the need for an effective, evidence-based tool for parents, to learn about children's early social-communication development and assess their child's 'likelihood' for ASC.

Study Aims: The primary aim of this study is to evaluate the psychometric properties of ASDetect in the early detection of children with ASC. A secondary aim is to assess ASDetect's acceptability and parental user experience with the application.

Methods: Families are recruited to download the application and participate in the study via social media, health professionals (e.g., MCH nurses, paediatricians) and word of mouth. All participating caregivers complete a demographic questionnaire, survey regarding their user experience, and the Social Responsiveness Scale-2 (SRS-2), an autism screening questionnaire; they are also invited to participate in focus groups. Children identified at 'high likelihood' for ASC based on the ASDetect results, the SRS-2 or parental and/or professional concerns undergo a formal, gold-standard, diagnostic assessment. Receiver Operating Characteristic analyses will be used to assess psychometric properties of ASDetect. Thematic analyses will be used to explore themes arising in the focus groups to provide insights regarding user experiences with the app. Multiple regression analyses will be carried out to determine the extent to which demographic factors, parental stress and beliefs on health surveillance and child results on ASDetect are associated with the parental user-experience of the application.

Discussion: With a strong evidence-base and global access, ASDetect has the potential to empower parents by providing them with knowledge of their child's social-communication development, validating and reassuring any parental concerns, and supporting them in communicating with other health professionals, ultimately enhancing child and family outcomes and well-being.
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http://dx.doi.org/10.1186/s12887-019-1888-6DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6969425PMC
January 2020

A systematic review of screening tools for the detection of autism spectrum disorder in mainland China and surrounding regions.

Autism 2020 02 20;24(2):285-296. Epub 2019 Aug 20.

La Trobe University, Australia.

Screening for autism spectrum disorder is the first step toward early detection and diagnosis, thereby impacting the likelihood of children accessing early intervention and, importantly, improving long-term outcomes. This systematic review aimed to (a) establish a clear baseline of autism spectrum disorder screening tools currently used throughout mainland China and surrounding regions, (b) identify the strengths and limitations of these instruments, and (c) develop specific recommendations regarding screening for autism spectrum disorder throughout Chinese-speaking countries. Databases were searched for recent (2015-2018) articles published in Chinese or English languages. Twenty-two studies (13 Chinese, 9 English) met inclusion criteria; two from Taiwan and the remainder from mainland China. Studies varied greatly in the extent of psychometric analyses and reported autism spectrum disorder prevalence. The majority of diagnoses were based on (4th ed. (DSM-IV) or 5th ed. (DSM-5)) criteria, although a small number of studies utilized gold-standard diagnostic assessment instruments. It is recommended that a systematic, multi-tiered, screening network be established to improve the identification of autism spectrum disorder in China and surrounding regions. Assessment and diagnosis need to be culturally appropriate, and amenable to low-resource settings. In addition, increased public awareness programs to reduce stigma will be important in improving outcomes for children with autism spectrum disorder.
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http://dx.doi.org/10.1177/1362361319871174DOI Listing
February 2020

Pre-emptive intervention versus treatment as usual for infants showing early behavioural risk signs of autism spectrum disorder: a single-blind, randomised controlled trial.

Lancet Child Adolesc Health 2019 09 16;3(9):605-615. Epub 2019 Jul 16.

Olga Tennison Autism Research Centre, School of Psychology and Public Health, La Trobe University, Bundoora, VIC, Australia.

Background: Great interest exists in the potential efficacy of prediagnostic interventions within the autism spectrum disorder prodrome, but available evidence relates to children at high familial risk. We aimed to test the efficacy of a pre-emptive intervention designed for infants showing early behavioural signs of autism spectrum disorder.

Methods: In this single-blind, randomised controlled trial done at two specialist centres in Australia, infants aged 9-14 months were enrolled if they were showing at least three early behavioural signs of autism spectrum disorder on the Social Attention and Communication Surveillance-Revised (SACS-R) 12-month checklist. Infants were randomly assigned (1:1) to receive a parent-mediated video-aided intervention (iBASIS-VIPP) or treatment as usual. Group allocation was done by minimisation, stratified by site, sex, age, and the number of SACS-R risk behaviours. Assessments were done at baseline (before treatment allocation) and at the 6 month endpoint. The primary outcome was Autism Observation Scale for Infants (AOSI), which measures early behavioural signs associated with autism spectrum disorder. Secondary outcomes were a range of infant and caregiver outcomes measured by Manchester Assessment of Caregiver-Infant interaction (MACI), Mullen Scales of Early Learning (MSEL), Vineland Adaptive Behaviour Scales, 2nd edition (VABS-2), MacArthur-Bates Communicative Development Inventory (MCDI), and Parenting Sense of Competence (PSOC) scale. This trial is registered with Australian New Zealand Clinical Trials Registry, number ANZCTR12616000819426.

Findings: Between June 9, 2016, and March 30, 2018, 103 infants were randomly assigned, 50 to the iBASIS-VIPP group and 53 to the treatment-as-usual group. After the intervention, we observed no significant differences between groups on early autism spectrum disorder behavioural signs measured by the AOSI (difference estimate -0·74, 95% CI -2·47 to 0·98). We also observed no significant differences on secondary outcomes measuring caregiver non-directiveness (0·16, -0·33 to 0·65), caregiver sensitive responding (0·24, -0·15 to 0·63), and infant attentiveness (-0·19, -0·63 to 0·25) during parent-child interactions (MACI), as well as on researcher-administered measures of receptive (1·30, -0·48 to 3·08) and expressive language (0·54, -0·73 to 1·80), visual reception (0·31, -0·77 to 1·40), and fine motor skills (0·55, -0·32 to 1·41) using the MSEL. Compared with the treatment-as-usual group, the iBASIS-VIPP group had lower infant positive affect (-0·69, -1·27 to -0·10) on the MACI, but higher caregiver-reported receptive (37·17, 95% CI 10·59 to 63·75) and expressive vocabulary count (incidence rate ratio 2·31, 95% CI 1·22 to 4·33) on MCDI, and functional language use (difference estimate 6·43, 95% CI 1·06 to 11·81) on VABS. There were no significant group differences on caregiver-reported measures of MCDI infant gesture use (3·22, -0·60 to 7·04) and VABS social behaviour (3·28, -1·43 to 7·99). We observed no significant differences between groups on self-reported levels of parenting satisfaction (difference estimate 0·21, 95% CI -0·09 to 0·52), interest (-0·23, -0·62 to 0·16) and efficacy (-0·08, -0·38 to 0·22) on PSOC.

Interpretation: A pre-emptive intervention for the autism spectrum disorder prodrome had no immediate treatment effect on early autism spectrum disorder symptoms, the quality of parent-child interactions, or researcher-administered measures of developmental skills. However, we found a positive effect on parent-rated infant communication skills. Ongoing follow-up of this infant cohort will assess longer-term developmental effects.

Funding: Western Australia Children's Research Fund, Autism Cooperative Research Centre, La Trobe University, and Angela Wright Bennett Foundation.
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http://dx.doi.org/10.1016/S2352-4642(19)30184-1DOI Listing
September 2019

Age of Diagnosis of Autism Spectrum Disorder in Nepal.

J Autism Dev Disord 2019 Jun;49(6):2258-2267

School of Psychology and Public Health, Olga Tennison Autism Research Centre, La Trobe University, Kingsbury Drive, Bundoora, Melbourne, VIC, 3086, Australia.

The current study investigated the age of diagnosis (AoD) of autism spectrum disorder (ASD) in Nepal by using de-identified data on 246 children with a diagnosis of ASD registered at AutismCare Nepal Society from 2010 to 2015. The mean AoD in children was 58 months (range 14-187 months). Majority of children were male (76%), lived in the Kathmandu valley (75%), and were from upper caste groups (62%). The mean diagnostic age of ASD in Nepal is much later than the age at which a reliable diagnosis is possible, indicating the need to reduce the gap between the age at which it is possible to diagnose ASD, and the average age at which ASD is currently diagnosed.
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http://dx.doi.org/10.1007/s10803-019-03884-7DOI Listing
June 2019

Cognitive and behavioral differences in toddlers with autism spectrum disorder from multiplex and simplex families.

Autism Res 2019 04 21;12(4):682-693. Epub 2019 Jan 21.

Olga Tennison Autism Research Centre, La Trobe University, Melbourne Campus, Bundoora, Victoria, Australia.

Prospective, longitudinal designs utilizing "high-risk" infant siblings of children diagnosed with Autism Spectrum Disorder (ASD-sibs) have provided unique and valuable insights regarding the early ASD phenotype. However, it remains unclear whether these cases are representative of all children with ASD. The objective in the present study was to investigate whether the early development of toddlers with ASD from multiplex (MPX) families, who have an affected older sibling, is similar or different to toddlers with ASD from simplex (SPX) families, where there is no affected sibling. A further aim was to examine patterns of association between autism symptom severity and cognitive functioning within each group to inform possible mechanisms for group similarities/differences. Behavioral and cognitive assessment data from a sample of toddlers with ASD was utilized, comprising 45 MPX, 127 first-born SPX, and 72 later-born SPX toddlers. Participants in the MPX group had significantly higher developmental quotients on the Mullen Scales of Early Learning compared to those in the SPX groups, who did not differ from each other. However, all three groups were similar on their autism severity scores (measured using the Autism Diagnostic Observation Schedule and the Autism Diagnostic Interview), and the pattern of relationships between cognitive ability and autism symptom severity. The results suggest that caution be exercised in generalizing findings from ASD-sib samples to other samples of children with ASD. The higher cognitive abilities in the MPX group, in addition to biological differences, may also be an outcome of family environmental factors, which deserves further investigation. Autism Research 2019, 12: 682-693. © 2019 International Society for Autism Research, Wiley Periodicals, Inc. LAY SUMMARY: We sought to establish whether toddlers with autism from families where there is more than one affected child, called multiplex families, are different to children from simplex families, where there is only one affected child, and no other members within the immediate family with an autism diagnosis. We found that while toddlers from multiplex families were similar to those from simplex families in their autism symptoms, they were more developmentally advanced than children in the latter group.
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http://dx.doi.org/10.1002/aur.2074DOI Listing
April 2019

Skeletal Growth Dysregulation in Australian Male Infants and Toddlers With Autism Spectrum Disorder.

Autism Res 2018 06 6;11(6):846-856. Epub 2018 Apr 6.

Olga Tennison Autism Research Centre, School of Psychology and Public Health, La Trobe University, Bundoora, Victoria, Australia.

Recent findings suggest that children with Autism Spectrum Disorder (ASD) are larger in size for head circumference (HC), height, and weight compared to typically developing (TD) children; however, little is known about their rate of growth, especially in height and weight. The current study aimed to: (a) confirm and extend upon previous findings of early generalized overgrowth in ASD; and (b) determine if there were any differences in the rate of growth between infants and toddlers with ASD compared to their TD peers. Measurements of HC, height, and weight were available for 135 boys with ASD and 74 TD boys, from birth through 3 years of age. Size and growth rate in HC, height, and weight were analyzed using a linear mixed-effects model. Infants with ASD were significantly smaller in size at birth for HC, body length, and weight compared to TD infants (all P < 0.05); however, they grew at a significantly faster rate in HC and height in comparison to the TD children (P < 0.001); there was no significant difference between the groups in growth rate for weight (P > 0.05). The results confirmed that male infants and toddlers with ASD exhibit skeletal growth dysregulation early in life. Autism Res 2018, 11: 846-856. © 2018 International Society for Autism Research, Wiley Periodicals, Inc.

Lay Summary: Recent findings suggest that infants with Autism Spectrum Disorder (ASD) are smaller in size at birth compared to typically developing infants but grow larger than their peers during the first year. Little is known about their rate of growth, especially for height and weight. Our findings confirmed that infants with ASD are smaller in size at birth for head circumference (HC), height, and weight, but grow at a faster rate in HC and height than their peers from birth to 3 years.
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http://dx.doi.org/10.1002/aur.1952DOI Listing
June 2018

Gender Differences During Toddlerhood in Autism Spectrum Disorder: A Prospective Community-Based Longitudinal Follow-Up Study.

J Autism Dev Disord 2018 08;48(8):2619-2628

Olga Tennison Autism Research Centre, La Trobe University, Kingsbury Drive, Melbourne, VIC, 3086, Australia.

Relatively few studies have examined gender differences in infants and toddlers, and most focus on clinically referred samples or high-risk infant cohorts. The current study aimed to examine gender differences in early autism manifestations and cognitive development in a community-ascertained sample. In total, 46 males and 21 females with ASD were seen at approximately 24 and 48 months of age. No significant gender differences were observed on overall cognitive ability, verbal skills, non-verbal skills, overall autism severity, or restricted repetitive behaviours. However, females were found to exhibit more social communication impairments than males. These findings may indicate that female toddlers with less severe or different, social communication impairments may be more likely to be missed during routine surveillance during toddlerhood.
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http://dx.doi.org/10.1007/s10803-018-3516-yDOI Listing
August 2018

School Age Outcomes of Children Diagnosed Early and Later with Autism Spectrum Disorder.

J Autism Dev Disord 2018 01;48(1):92-102

Olga Tennison Autism Research Centre, School of Psychology and Public Health, La Trobe University, Kingsbury Drive, Bundoora, Melbourne, VIC, 3086, Australia.

Early diagnosis of Autism Spectrum Disorder is considered best practice, increasing access to early intervention. Yet, many children are diagnosed after 3-years. The current study investigated the school age outcomes of children who received an early and later diagnosis of ASD. The cognitive and behavioural outcomes of children diagnosed early (n = 48), were compared to children diagnosed after 3-years (n = 37). Children diagnosed early accessed more intervention, demonstrated better verbal and overall cognition at school age, were more likely to attend mainstream school and required less ongoing support than children diagnosed later. Behavioural differences were not found between groups. Earlier diagnosis is important and is likely to promote more positive outcomes at school age due to increased opportunity for EI.
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http://dx.doi.org/10.1007/s10803-017-3279-xDOI Listing
January 2018

Interaction Behaviors of Bilingual Parents With Their Young Children With Autism Spectrum Disorder.

J Clin Child Adolesc Psychol 2018 21;47(sup1):S321-S328. Epub 2017 Mar 21.

c A.J. Drexel Autism Institute , Drexel University.

Given concerns that bilingual exposure might confuse children with disabilities-including autism spectrum disorder (ASD)-bilingual parents may restrict exposure to one language, often the community-dominant language. We investigated a potential consequence of this decision; the possibility that non-native language use might influence parental communicative behaviors during interaction with the child. We recruited 39 parent-child dyads, each with a young child with ASD (mostly boys) and parent/carer (mostly mothers). Parents were either monolingual speakers of community-dominant English (n = 20) or bilingual with English as the second language (n = 19). We confirmed our assumption that the latter group would have significantly poorer non-native English language via standardized assessment of expressive vocabulary, and ensured children were matched on age, ASD symptoms, and developmental level. We sampled parent-child interaction-including in each of bilinguals' native and non-native languages-and coded parents' amount and complexity of speech, communicative synchrony, and imitations and expansions of their child's speech. Few differences presented across bilingual parents' native versus non-native language samples, but this group showed reduced synchrony and use of expansions compared to monolinguals. Further, bilinguals' English-language knowledge was associated with self-reported comfort using this language and with two coded interaction measures. These empirical data only partially support qualitative accounts that non-native language use may influence bilingual parents' interaction behaviors with their young children. With growing rates of ASD diagnosis and increasing cultural/linguistic diversity around the world, further dedicated clinical and experimental attention to this issue is clearly warranted.
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http://dx.doi.org/10.1080/15374416.2017.1286592DOI Listing
September 2019

Continuity and Change in Cognition and Autism Severity from Toddlerhood to School Age.

J Autism Dev Disord 2017 Feb;47(2):328-339

Olga Tennison Autism Research Centre, School of Psychology and Public Health, La Trobe University, Kingsbury Drive, Bundoora, Melbourne, VIC, 3086, Australia.

This paper charted the cognitive and behavioural profiles from toddlerhood to middle childhood in 48 children diagnosed with ASD at 24-months. The Mullen Scales of Early Learning (MSEL) was administered at 24- and 48-months and the Wechsler Abbreviated Scale of Intelligence (WASI) at school age. Autism severity was derived using The Autism Diagnostic Observation Schedule (ADOS) Results: Developmental Disability/Intellectual Disability (DD/ID; Developmental Quotient <70) reduced from 64% at 24-months to 8% at outcome. Seventy-three percent of children continued to meet ADOS cut-off at school age.

Conclusion: Diagnoses at 24-months, appear to be reliable and stable. Further research is needed to investigate whether early identification, which provides more opportunity to access early intervention, may in turn facilitate cognitive development over time.
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http://dx.doi.org/10.1007/s10803-016-2954-7DOI Listing
February 2017

Change in Autism Diagnoses Prior to and Following the Introduction of DSM-5.

J Autism Dev Disord 2017 Jan;47(1):163-171

Olga Tennison Autism Research Centre, School of Psychology and Public Health, La Trobe University, Melbourne, VIC, 3086, Australia.

Change over time in the age and number of children registered for autism-specific funding was examined, prior to and following introduction of the revised diagnostic criteria (the Diagnostic and Statistical Manual of Mental Disorders-fifth edition; DSM-5). De-identified data for 32,199 children aged under 7 years between 2010 and 2015 was utilised. Fluctuations were evident in the frequency and age of diagnoses, with slight increases in age of diagnosis corresponding with increases in frequency of diagnoses. The incidence of autism increased from 2010 to 2013, and then plateaued to 2015. A significant trend-relative reduction in the number of children registered to receive autism-specific funding was evident post 2013, suggesting the more stringent DSM-5 criteria may have curbed the trend of increasing diagnoses over time.
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http://dx.doi.org/10.1007/s10803-016-2942-yDOI Listing
January 2017

Diagnostic stability of autism spectrum disorder in toddlers prospectively identified in a community-based setting: Behavioural characteristics and predictors of change over time.

Autism 2017 10 28;21(7):830-840. Epub 2016 Jul 28.

La Trobe University, Australia.

Autism spectrum disorder diagnoses in toddlers have been established as accurate and stable across time in high-risk siblings and clinic-referred samples. Few studies have investigated diagnostic stability in children prospective identified in community-based settings. Furthermore, there is a dearth of evidence on the individual behaviours that predict diagnostic change over time. The stability and change of autism spectrum disorder diagnoses were investigated from 24 to 48 months in 77 children drawn from the Social Attention and Communication Study. Diagnostic stability was high, with 88.3% overall stability and 85.5% autism spectrum disorder stability. The behavioural markers at 24 months that contributed to diagnostic shift off the autism spectrum by 48 months included better eye contact, more directed vocalisations, the integration of gaze and directed vocalisations/gestures and higher non-verbal developmental quotient. These four variables correctly predicted 88.7% of children into the autism spectrum disorder-stable and autism spectrum disorder-crossover groups overall, with excellent prediction for the stable group (96.2%) and modest prediction for the crossover group (44.4%). Furthermore, non-verbal developmental quotient at 24 months accounted for the significant improvement across time in 'Social Affect' scores on the Autism Diagnostic Observation Schedule for both groups and was the only unique predictor of diagnostic crossover. These findings contribute to the body of evidence on the feasibility of diagnoses at earlier ages to facilitate children's access to interventions to promote positive developmental outcomes.
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http://dx.doi.org/10.1177/1362361316654084DOI Listing
October 2017

Autism screening and diagnosis in low resource settings: Challenges and opportunities to enhance research and services worldwide.

Autism Res 2015 Oct 6;8(5):473-6. Epub 2015 Oct 6.

Autism Speaks, 1 East 33rd Street, 4th Floor, New York.

Most research into the epidemiology, etiology, clinical manifestations, diagnosis and treatment of autism is based on studies in high income countries. Moreover, within high income countries, individuals of high socioeconomic status are disproportionately represented among participants in autism research. Corresponding disparities in access to autism screening, diagnosis, and treatment exist globally. One of the barriers perpetuating this imbalance is the high cost of proprietary tools for diagnosing autism and for delivering evidence-based therapies. Another barrier is the high cost of training of professionals and para-professionals to use the tools. Open-source and open access models provide a way to facilitate global collaboration and training. Using these models and technologies, the autism scientific community and clinicians worldwide should be able to work more effectively and efficiently than they have to date to address the global imbalance in autism knowledge and at the same time advance our understanding of autism and our ability to deliver cost-effective services to everyone in need.
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http://dx.doi.org/10.1002/aur.1575DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4901137PMC
October 2015

Mapping the diagnosis of autism spectrum disorders in children aged under 7 years in Australia, 2010-2012.

Med J Aust 2015 Apr;202(6):317-20

La Trobe University, Melbourne, VIC, Australia.

Objectives: To investigate the frequency and age at diagnosis of autism spectrum disorder (ASD) in children aged under 7 years living in Australia.

Design And Participants: Analysis of de-identified data on 15 074 children aged under 7 years registered with the Helping Children with Autism Package (HCWAP; a program that provides funding for access to early intervention and support services throughout Australia) between 1 July 2010 and 30 June 2012.

Main Outcome Measures: Age at diagnosis of ASD as confirmed by a paediatrician, psychiatrist and/or multidisciplinary team assessment.

Results: The average age at diagnosis of ASD in children registered with the HCWAP is currently 49 months, with the most frequently reported age being 71 months. Differences were evident in age at diagnosis across states, with children in Western Australia and New South Wales being diagnosed at a younger age. Across Australia, 0.74% of the population of children aged under 7 years are currently diagnosed with ASD and registered with the HCWAP. A higher proportion of children were registered with the HCWAP in Victoria compared with other states. There was no difference in age at diagnosis between Indigenous and non-Indigenous Australians, but children from a culturally and linguistically diverse background were diagnosed 5 months earlier than other children.

Conclusions: There may be a substantial gap between the age at which a reliable and accurate diagnosis of ASD is possible and the average age that children are currently diagnosed. The frequency of ASD diagnoses in Australia has increased substantially from previously published estimates.
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http://dx.doi.org/10.5694/mja14.00328DOI Listing
April 2015

Intellectual development in autism spectrum disorders: new insights from longitudinal studies.

Front Hum Neurosci 2013 5;7:354. Epub 2013 Jul 5.

Olga Tennison Autism Research Centre, School of Psychological Science, La Trobe University , Melbourne, VIC , Australia ; Victorian Autism Specific Early Learning and Care Centre, La Trobe University , Melbourne, VIC , Australia.

The presence/absence of Intellectual Disability (ID) is considered to be the most critical factor affecting outcomes in individuals with Autism Spectrum Disorders (ASD). However, the question of the specific nature of ID in ASD has received little attention, with the current view being that ID is a comorbid condition (i.e., one that is unrelated in etiology and causality from the ASD itself). Recent advances in developmental neuroscience, highlighting the importance of early exposure to social experiences for cognitive development, support an alternative view; that ID in ASD might emerge as a consequence of severe social-communication deficits on the experience-dependent mechanisms underlying neurocognitive development. We tested this prediction in two independent samples of young children with ASD (Ns = 23 and 60), finding that children with greater ASD severity at an initial assessment were more likely to present with poorer cognitive outcomes at a later assessment, irrespective of initial cognitive level. The results of this proof of principle study suggest that ASD symptom severity contributes to the extent to which the environmental input required to support "typical" brain development can be processed by the individual, so that the risk of developing ID increases as the number and severity of ASD social-communicative impairments increase.
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http://dx.doi.org/10.3389/fnhum.2013.00354DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3701858PMC
July 2013

Early markers of autism spectrum disorders in infants and toddlers prospectively identified in the Social Attention and Communication Study.

Autism 2013 Jan 26;17(1):64-86. Epub 2012 Jun 26.

Olga Tennison Autism Research Centre, School of Psychological Science, La Trobe University, Australia.

The Social Attention and Communication Study involved the successful implementation of developmental surveillance of the early markers of autism spectrum disorders in a community-based setting. The objective in the current study was to determine the most discriminating and predictive markers of autism spectrum disorders used in the Social Attention and Communication Study at 12, 18 and 24 months of age, so that these could be used to identify children with autism spectrum disorders with greater accuracy. The percentage of 'yes/no' responses for each behavioural marker was compared between children with autistic disorder (n = 39), autism spectrum disorder (n = 50) and developmental and/or language delay (n = 20) from 12 to 24 months, with a logistic regression also conducted at 24 months. Across all ages, the recurring key markers of both autistic disorder and autism spectrum disorder were deficits in eye contact and pointing, and from 18 months, deficits in showing became an important marker. In combination, these behaviours, along with pretend play, were found to be the best group of predictors for a best estimate diagnostic classification of autistic disorder/autism spectrum disorder at 24 months. It is argued that the identified markers should be monitored repeatedly during the second year of life by community health-care professionals.
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http://dx.doi.org/10.1177/1362361312442597DOI Listing
January 2013

Developmental profiles of infants and toddlers with autism spectrum disorders identified prospectively in a community-based setting.

J Autism Dev Disord 2012 Sep;42(9):1939-48

School of Psychological Science, Olga Tennison Autism Research Centre, La Trobe University, Bundoora, VIC, 3083, Australia.

This prospective, longitudinal, study charted the developmental profiles of young children with Autism Spectrum Disorders (ASD) identified through routine developmental surveillance. 109 children with Autistic Disorder (AD), 'broader' ASD, and developmental and/or language delays (DD/LD) were assessed using the Mullen Scales of Early Learning (MSEL) at 12-months (n = 10 assessments), 18-months (n = 45 assessments), and 24-months (n = 99 assessments). The children with AD performed most poorly, overall, than the ASD and DD/LD groups on the MSEL. Furthermore, the children with AD/ASD displayed an uneven cognitive profile, with poorer performance on verbal (particularly receptive language) relative to nonverbal skills. There was also evidence of developmental slowing in verbal skills from 18- to 24-months for children on the spectrum, especially those with AD. Given that the poor receptive, relative to expressive, language profile emerges very early in life for children with AD/ASD, this cognitive profile may serve as an additional red flag to social attention and communication deficits. Receptive language should therefore be stringently monitored in any developmental surveillance program for autism spectrum disorders in the second year of life.
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http://dx.doi.org/10.1007/s10803-012-1441-zDOI Listing
September 2012

Developmental surveillance of infants and toddlers by maternal and child health nurses in an Australian community-based setting: promoting the early identification of autism spectrum disorders.

J Pediatr Nurs 2011 Aug 23;26(4):334-47. Epub 2010 Jun 23.

Olga Tennison Autism Research Centre, School of Psychological Science, La Trobe University, Bundoora, Victoria, Australia.

Although signs of autism spectrum disorders (ASDs) are evident during the first year of life, few children are diagnosed prior to 3 years. The objective in this article is to highlight the role that primary health care professionals can play in the early identification of ASDs by briefly outlining the successful implementation of The Social Attention and Communication Study. Maternal and child health nurses were trained on the early signs of ASDs, which enabled them to identify these children prior to 2 years. The training procedure used will be outlined, and the early signs that were monitored will be explained in detail. It is recommended that routine monitoring for ASDs in infancy and toddlerhood become standard practice among all primary health care professionals.
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http://dx.doi.org/10.1016/j.pedn.2010.04.007DOI Listing
August 2011

Prospective identification of autism spectrum disorders in infancy and toddlerhood using developmental surveillance: the social attention and communication study.

J Dev Behav Pediatr 2010 Jun;31(5):376-85

Olga Tennison Autism Research Centre, School of Psychological Science, La Trobe University, Bundoora, VIC, Australia.

Objective: Despite behavioral markers of autism spectrum disorders (ASDs) being evident within the first year of life, there remains little research on the prospective identification of these children in a community-based setting before 18 months. The aim in the Social Attention and Communication Study was to identify infants and toddlers at risk of an ASD during their first 2 years.

Methods: A total of 241 Maternal and Child Health nurses were trained on the early signs of ASDs at 8, 12, 18 and 24 months. Using a developmental surveillance approach with a community-based sample, a cohort of 20,770 children was monitored on early social attention and communication behaviors. Those infants/toddlers identified as "at risk" were referred to the Social Attention and Communication Study team from 12 months for developmental and diagnostic assessments at 6 monthly intervals, until 24 months.

Results: A total of 216 children were referred, with 110 being further assessed. Of these, 89 children were classified with an ASD at 24 months, and 20 children had developmental and/or language delays, resulting in a Positive Predictive value of 81%. The estimated rate of ASDs in the Social Attention and Communication Study cohort ranged from 1:119 to 1:233 children. Estimated sensitivity ranged from 69% to 83.8%, and estimated specificity ranged from 99.8% to 99.9%.

Conclusion: Developmental surveillance of social and communication behaviors, which differ according to the age at which the child is monitored, enables the accurate identification of children at risk for ASDs between 12 and 24 months. Education on the early signs is recommended for all primary health care professionals to facilitate early identification of ASDs.
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http://dx.doi.org/10.1097/DBP.0b013e3181df7f3cDOI Listing
June 2010

Autism spectrum disorders in infancy and toddlerhood: a review of the evidence on early signs, early identification tools, and early diagnosis.

J Dev Behav Pediatr 2009 Oct;30(5):447-59

Olga Tennison Autism Research Centre, School of Psychological Science, La Trobe University, Bundoora, Victoria, Australia.

To date, the biological basis of autism spectrum disorders (ASDs) remains unknown. Thus, identification and diagnosis are reliant on behavioral presentation and developmental history. There have been significant advances in our knowledge of the early signs of ASD through the use of retrospective videotape analysis, parental report, screening studies, and more recently, studies on high-risk infant siblings. Despite behavioral markers being identified within the first year of life, the current average age of diagnosis for ASD remains at approximately 3 years or older. Consequently, these children are not receiving intervention in their early years, which is increasingly recognized as an important time to begin intervention. There remains little research on the prospective identification of these children in a community-based sample before 18 months. It is recommended that future prospective studies monitor behavior repeatedly over time, thereby increasing the opportunity to identify early manifestations of ASD and facilitating the charting of subtle behavioral changes that occur in the development of infants and toddlers with ASD.
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http://dx.doi.org/10.1097/DBP.0b013e3181ba0f9fDOI Listing
October 2009

A comparative study of the use and understanding of self-presentational display rules in children with high functioning autism and Asperger's disorder.

J Autism Dev Disord 2007 Aug;37(7):1235-46

School of Psychological Science, La Trobe University, Melbourne, Victoria, 3086, Australia.

The use and understanding of self-presentational display rules (SPDRs) was investigated in 21 children with high-functioning autism (HFA), 18 children with Asperger's disorder (AspD) and 20 typically developing (TD) children (all male, aged 4- to 11-years, matched on mental age). Their behaviour was coded during a deception scenario to assess use of SPDRs; understanding of SPDRs was assessed via three real/apparent emotion-understanding vignettes. The children with HFA and AspD used less effective SPDRs than the TD children, but there were no group differences in understanding SPDRs. The children with HFA and AspD did not differ on their use or understanding of SPDRs, and the results are discussed in relation to the similarities and differences between these diagnostic conditions.
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http://dx.doi.org/10.1007/s10803-006-0267-yDOI Listing
August 2007
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