Background
Factors that impact the prevalence estimate of autism spectrum disorder (ASD) in Indigenous populations
Psychosocial challenges across developmental stages
Supporting caregivers of people with ASD
This study
Methods
Systematic review of psychosocial programs
Search strategy
Study eligibility criteria
Study quality assessment
Data extraction and data synthesis
Catalogue of psychosocial resources
Search strategy
Study eligibility criteria
Data extraction
Results
Systematic review
Author Date (Study location) | ID | Type and title | Description and aim | Study design, participants, and quality (MMAT) | Findings | Strengths and limitations |
---|---|---|---|---|---|---|
Bettag, 2016 (Hawaii) [65] | A | Dissertation: Analysis of the adaptation of the responsive teaching paradigm to serve predominantly native Hawaiian communities: A framework for guiding culturally appropriate, family-centered, relationship-based early childhood services. | Adapted and implemented a play-based, relationship-oriented program in low SES Native Hawaiian communities to strengthen caregiver-child relationships and improve children’s developmental functioning. | Mixed methods naturalistic before and after design. N = 44 Children (0–5 years) with developmental delay and their families. Quality: Moderate. | Significant increase in children’s post program developmental outcomes across personal, social, cognitive, and communication domains. Significant improvements were seen in the relationship between caregiver and child after completing the program. Caregivers reported a high degree of satisfaction with the program and its benefits. | Each family received an in-home program of 24 weekly sessions tailored for their strengths and needs. Used validated pre and post scales and semi-structured assessments. Non-randomised single group study. Emphasis on naturalistic validity and accessibility decreased experimental control and undercut causal relationship between program completion and outcomes. Errors in coding of pre and post interaction videos led to lower inter-rater reliability of semi-structured assessments. Findings were derived from the quantitative data only. Attrition bias (61% attrition) threatens study validity. |
Keightley et al., 2018 (Canada) [66] | B | Article: Investigating a theatre-based intervention for Indigenous youth with Fetal Alcohol Spectrum Disorder (FASD) | Used theatre-based activities (e.g., voice work, breathing, group dynamics) to facilitate social and emotional awareness of Indigenous children with developmental impairment associated with FASD. | Qualitative exploratory case-series design. N = 3 Children (9–14 years) with FASD or alcohol-related neurodevelop-mental disorder. Quality: Moderate. | Qualitative data from participants, parents, and program facilitators 2 weeks post-program showed improvements in self-esteem, social skills, and emotional awareness. | Included culturally relevant activities in the program (e.g., medicine wheel crafting, drumming). Non-randomised single group study Only anecdotal data was gathered from focus group follow up interviews, and not all participants contributed to the data. Small sample size. |
Lindblom, 2017 (Canada) [67] | C | Article: ‘It gives them a place to be proud’- Music and social inclusion. Two diverse cases of young First Nations people diagnosed with autism in British Columbia, Canada. | Used Indigenous music as a tool to promote a sense of inclusion in Indigenous children with ASD. | Qualitative ethnography and Indigenous research methods design. N = 2 Children with Indigenous status and ASD (1 boy: 8 years old; 1 girl: 16 years old). Quality: Low. | Qualitative data suggested that traditional and contemporary music can be used to facilitate inclusion for Indigenous children with ASD through increased connection with people around them, including increased eye contact, singing, and playing of instruments together. | Researcher collaborated with traditional Elders and knowledge holders. Gathered data from semi-structured interviews, observations, field notes, and videos. Conducted follow up interviews 12 months post intervention to strengthen interpretation of results. Non-randomised single group study. Small sample size. |
Lindblom, 2017 (Canada) [68] | D | Article: Exploring autism and music interventions through a First Nations lens. | Qualitatively explored the meaning, purpose and use of music for First Nations children with ASD. | Qualitative ethnography and Indigenous research methods design. N = 5 Children with Indigenous status and ASD (4 boys: 6, 8, 12 and 15 years old; 1 girl: 16 years old). Quality: Low. | Qualitative data suggested that music can improve mood, communication, relaxation and focus during study for First Nations children with ASD. | Researcher collaborated with traditional Elders and knowledge holders. Gathered data from semi-structured interviews, observations, and videos. Conducted follow up interviews 12 months post intervention to strengthen interpretation of results. Non-randomised single group study. Small sample size. |
Najera, 2012 (USA) [69] | E | Dissertation: Adaptive behavioural analysis (ABA) in Native American homes: A culturally responsive training for paraprofessionals. | Developed and evaluated a culturally adapted 3 module training resource for ABA tutors providing home-based support for Indigenous children with ASD. | Qualitative design. N = 3 Mental health professionals with experience of ABA and who worked with Native American populations. Quality: Moderate. | Evaluators concluded that the resource required further development but could be used to support ABA tutors working with Native American families. | Developed a culturally responsive training resource for ABA delivery in Native American homes. Evaluators had experience of ASD and working with Indigenous people. Non-randomised single group study. Small sample size. Only one evaluator identified as Indigenous. |
Wagner et al., 2019 (Australia) [70] | F | Article: Improving self-regulation and executive functioning skills in primary school children in a remote Australian Aboriginal community: A pilot study of the Alert Program®. | Piloted and adapted an 8-session weekly teacher-delivered self-regulation program in a rural Australian Indigenous community with a high prevalence of developmental impairment associated with FASD to improve students’ emotion regulation and executive functioning skills. | Quantitative before and after design. N = 25 Children in years 1 to 5 who had attended at least 20% of school over the past 6 months with or without a diagnosis of FASD. Quality: Low. | Parents/caregivers and teachers reported a significant improvement in students’ emotion regulation and executive functioning. Clinical improvements were more commonly reported by parents than teachers (executive functioning 33.3% vs. 26.1%; emotion regulation: 54.5% vs. 17.4%). | Collaborated with Aboriginal Elders and community, school staff, teachers and Aboriginal and Islander Education Officers to adapt and implement the program. Teachers were trained to deliver the program and were supported during delivery. Used validated scales to gather data from teachers and parents at 3 time points (pre, post and 8-week follow-up). A measure of disruptive behaviour was used as a proxy measure for emotion regulation. Non-randomised single group study. Non-blinded intervention delivered to the whole class. Small sample size. Attrition bias (52% attrition) threatens study validity. |
Wagner et al., 2019 (Australia) [71] | G | Article: RE-AIM evaluation of a teacher-delivered programme to improve the self-regulation of children attending Australian Aboriginal community primary schools. | Analysis of teachers’ experience of implementing an 8-session weekly teacher-delivered self-regulation program in a rural Australian Indigenous community with a high prevalence of developmental impairment associated with FASD to improve students’ emotion regulation and executive functioning. | Mixed methods design. N = 29 Classroom teachers from 8 primary schools in a rural Australian Indigenous community. Quality: Moderate. | Teachers reported increased understanding of self-regulation and the Alert Program®, greater self-efficacy in managing student needs and behaviours, and inclusion of several positive changes to their teaching and behaviour management practices. | Used a theoretically based evaluation framework to gather self-report data. All teachers attended one of two training sessions. 21% of teachers did not attend both training sessions. No independent fidelity checks: teacher self-reports of program implementation may have been biased by teachers’ motivation to portray full acceptance of the program. Qualitative feedback was not actively sought from teachers, limiting understanding of teachers’ experience. Attrition bias (41% attrition) threatens study validity. |
Catalogue of psychosocial resources
Resource | Developers | Type | Targeted population | Registration requirements | Assistance required | Cost and accessibility | Evaluated? | |
---|---|---|---|---|---|---|---|---|
1 | Aboriginal & Torres Strait Islander Peoples psychoeducation and support | Positive Partnerships | Website offering online psychoeducation with downloadable resources. | Parents, teachers and community engaged with children with ASD | Webinar access and community programs | Community programs are run by Positive Partnerships staff | Free. Online resources easily accessible. Must register for community program. | Yes |
2 | Alert Program Study | Telethon Kids Institute, Communities of the Fitzroy Valley, and Bree Wagner (lead researcher) | A school-based intervention program delivered through school curriculum that teaches students about self-regulation and provides them with strategies to improve focus and emotion regulation. | The program is delivered by teachers to all students, with a particular research focus on outcomes for students with FASD | Initial research has finished recruitment | Initial training delivered to teachers by researchers, teachers continue to implement the curriculum in the Fitzroy Valley | Free. Currently delivered only in the rural area of Fitzroy Valley, Western Australia as this area is disproportionately affected by FASD. | Yes – see Article F in systematic review for pilot study outcomes |
3 | Autism Aboriginal Way | Community Facebook Group | Online group providing support for Aboriginal people that identify as Autistic | Caregivers of Aboriginal children and adolescents with a diagnosis of ASD | Users must request to join the group and complete a short survey | No | Free. Access requires a Facebook account and internet access. | No |
4 | Autism Spectrum Australia Cultural and Indigenous Support | Autism Spectrum Australia | Resource providing psychoeducation and support for caregivers. | Parents or carers of Indigenous children with ASD | No | No | Free. Access requires internet access. | No |
5 | Autism Teen Wellbeing website | Lead researchers Ian Shochet and Beth Saggers in collaboration with Autism CRC, Positive Partnerships, & Queensland University of Technology | Website providing psychoeducation, resources, and cultural considerations for building resilience among teenagers with ASD within a multi-level approach. | Using a multi-level approach highlighting parents, carers, teachers, support staff, schools, and the wider community as supports for teens with ASD | No | No | Free. Access requires internet access. | No |
6 | Be My Koorda Support Group | Community Facebook Group and Online Website | Online group for caregivers. Shares information and strategies, and holds face-to-face meetings in Koorda, Western Australia. | Parents or carers of Indigenous children with ASD and other disabilities | Users must request to join the social media group | No | Free. Access requires a Facebook account and/or internet access. Meetings restricted to Koorda, Western Australia. | No |
7 | Early Days Workshops for Aboriginal and Torres Strait Islander Families | Secretariat of National Aboriginal and Islander Child Care (SNAICC) and Early Days – Promoting Development of Young Children on the Autism Spectrum | Educational workshops (online and face-to-face) to build resilience and provide information about Autism and intervention approaches. Access to local services during assessment and after diagnosis. | Parents or carers of young children with ASD, up to 6 years of age | Registration required | Yes, face-to-face workshops are delivered by Early Days staff in each state and territory to compliment online workshops | Free. Online workshops available to all. Face-to-face workshops have to be organised with the Early Days Team in each state or territory. | Yes: by Aboriginal parent, child care worker, and SNAICC. Ongoing post-workshop parent evaluations. |
8 | Early Intervention: Indigenous Liaison Officer Program (EI ILO) | Autism Queensland | Resource increasing awareness of childhood disability and diagnosis, benefits of early intervention, and links to culturally relevant services. | Parents, carers, families and communities of Indigenous children with ASD | No | No | Free. Available to all seeking support and information. Requires internet access | No |
9 | Four Directions Autism website | Volunteer-run support group | Website providing psychoeducational resources and support for parents. | Parents of First Nations children with ASD | No | No | Free. Online resources easily accessible. | No |
10 | Paediatric Child Health and Education Services (PATCHES) | PATCHES | Diagnostic and neuropsychology assessments for FASD, ASD, and other developmental disorders; a range of therapy services; and outreach programs. | Uniting schools and families with clinicians to support those with FASD, ASD, or other learning or developmental difficulties who live in remote and regional areas | Registration required | Yes | Free. Available in key communities in Western Australia, Northern Territory, New South Wales, and Tasmania. | No |
11 | Takiwātanga Māori Autism Support Group | Community Facebook Group | Online support for whānau (family) who have a child with ‘Takiwātanga’ (Autism) through the diagnosis system. | Whānau (family) who have a child or family member with ‘Takiwātanga’ (Autism) | Users must request to join the social media group | No | Free. Access requires a Facebook account and internet access. | No |