Preparedness and training needs of a regional public mental health service to support people with intellectual disability.

OBJECTIVE: To explore the preparedness and training needs of a regional public mental health workforce to support people with intellectual disability and mental ill health. SETTING AND PARTICIPANTS: Staff from a regional public mental health service in Victoria, Australia. DESIGN: A mixed-methods design comprised a survey, interviews and a focus group to collect data about staff attitudes, confidence, education and professional development regarding supporting people with intellectual disability and mental ill health. Descriptive and thematic analyses were used. RESULTS: Data from 31 survey respondents, seven interviews and one focus group were analysed. Survey descriptive analyses showed participants believed treating people with intellectual disability was part of their role but reported areas of low confidence along with insufficient education and training in intellectual disability mental health. Thematic analyses from interviews showed that underpinning confidence, education and training were the themes (1) need for flexibility, such as having more time and (2) solutions but with challenges, such as limited opportunity to upskill and availability of experts. A need for collaborative problem-solving where staff share skills and information to work towards person-centred solutions was a key theme from the focus group analysis. CONCLUSION: Professional development in intellectual disability mental health is required for the regional public mental health workforce but needs to account for the challenges experienced and reflect how teams function. Exploration of described preparedness offered a possible learning approach informed by workforce members. Collaborative learning approaches to supporting people with intellectual disability and mental ill health are suggested.

Aided Enhanced milieu teaching to develop symbolic and social communication skills in children with autism spectrum disorder.

Children who lack functional spoken language are candidates for augmentative and alternative communication (AAC). Aided AAC and naturalistic interventions offer the potential to extend the communication functions demonstrated by children with autism spectrum disorder (ASD) who are nonspeaking. Related intervention research, however, has been limited, in that interventions have generally targeted a limited range of communication functions taught in highly structured, decontextualized environments. The aim of this study was to investigate the efficacy of an intervention that combined aided AAC with a naturalistic intervention - enhanced milieu teaching (AEMT) - to increase symbolic communication in children with autism spectrum disorder. Three children with autism spectrum disorder participated in a multiple probe design, in which a range of communication functions were targeted using the AEMT. Results showed increases in the use of symbolic communication from baseline to intervention phases, which were found to be statistically significant for two of the three children (phi 0.7-0.81; p < .001). Intervention outcomes were generalized to a communication partner not involved in the intervention and maintained over time for all children. The study provides preliminary evidence that communication functions beyond object requests could be taught using a systematic, multi-element approach implemented across activities.

The perspectives of allied health clinicians on the working alliance with people with stroke-related communication impairment.

The processes by which working alliances develop in stroke rehabilitation are not well understood. The aim of this study was to explore the ways in which experienced allied health clinicians establish and maintain alliances with people with stroke-related communication impairment, and to identify factors that may influence the strength of these alliances. In-depth interviews were completed with 11 clinicians from the disciplines of occupational therapy, speech-language pathology and physiotherapy. Interview transcripts were coded and analysed using strategies consistent with constructivist grounded theory. Participants described processes that were captured by the themes of enabling interaction, being responsive, building relational capital and building credibility. Practices that supported communication and emphasized responding, both within an interaction and over time, aligned with examples of strong alliances. Professional credibility and relational practices such as everyday conversations and the use of humour were viewed as important. Difficulty accessing a shared mode of communication due to stroke-related communication impairment altered relational processes and influenced perceptions of the alliance, although examples of strong alliances were present. In this study, reflections on challenging alliances highlighted potentially helpful practices. A responsive approach to rehabilitation, supported by reflective practice, may assist clinicians to better navigate their working alliances with this population.

Has teaching about intellectual disability healthcare in Australian medical schools improved? A 20-year comparison of curricula audits.

BACKGROUND: People with intellectual disability (ID) have multiple and complex health needs, more frequent healthcare episodes, and experience poorer health outcomes. Research conducted two decades ago showed that medical professionals were lacking in the knowledge and skills required to address the complex needs of this patient group. The aim of the current study was to determine whether Australian undergraduate medical schools that offer ID health education content had changed the amount and nature of such teaching over this period. METHODS: Identical or equivalent questionnaire items were compared across eight Australian medical schools that participated in curricula audits conducted in 1995 (referred to as T1) and 2013/14 (T2). The audits were of the nature of the ID content, methods used to teach it, and who taught it. RESULTS: There was no significant difference in the number of hours of compulsory ID content offered to medical students at T2 (total = 158.3 h; median = 2.8 h per ID unit) compared with T1 (total = 171 h; median = 2.5 h). At T2 compared with T1, units with ID content taught in the area of general practice had increased (2 units; 3.6% to 7 units; 16.3%), while decreases were seen in paediatrics (22 units; 40.0% to 10 units; 23.3%) and psychiatry (10 units; 18.2% to 4 units; 9.3%). The number of schools using problem- and/or enquiry-based learning rose to six at T2 from one at T1. Inclusive teaching practices (people with ID develop or deliver content) in compulsory/elective units had increased at T2 (10 units; 23.3%) compared with T1 (6 units; 10.9%), but direct clinical contact with people with ID had decreased (29 units; 52.7% to 11 units; 25.6%). CONCLUSIONS: Overall, little progress has been made to address the gaps in ID education for medical students identified from an audit conducted in 1995. Renewal of ID content in medical curricula is indicated as a key element in efforts to improve workforce capacity in this area and reduce barriers to care, with the aim of reversing the poor health outcomes currently seen for this group.

Dimensions of group home culture as predictors of quality of life outcomes.

BACKGROUND: Research has shown that there is variability in quality of life (QOL) outcomes for people with intellectual disabilities who live in group homes. The aim was to examine dimensions of group home culture as predictors of QOL outcomes. METHOD: The Group Home Culture Scale (GHCS) was used to measure staff perceptions of culture in 23 group homes. QOL data were available from 98 people with intellectual disabilities. Multilevel modelling was used to examine the associations between the GHCS subscales and four QOL-dependent variables. RESULTS: Of the GHCS subscales, Effective Team Leadership and Alignment of Staff with Organizational Values significantly predicted residents' engagement in activities. Supporting Well-Being significantly predicted residents' community involvement. None of the GHCS subscales significantly predicted domestic participation and choice making. CONCLUSIONS: The findings suggest that strategies to improve Effective Team Leadership and Supporting Well-Being dimensions of culture may contribute to enhancing certain QOL outcomes.

Factors that predict good Active Support in services for people with intellectual disabilities: A multilevel model.

BACKGROUND: Active Support, now widely adopted by disability support organizations, is difficult to implement. The study aim was to identify the factors associated with good Active Support. METHODS: Data on service user and staff characteristics, quality of Active Support and practice leadership were collected from a sample of services from 14 organizations annually for between 2 and 7 years, using questionnaires, structured observations and interviews. Data were analysed using multilevel modelling (MLM). RESULTS: Predictors of good Active Support were adaptive behaviour, practice leadership, Active Support training, and time since its implementation. Heterogeneity, having more than six people in a service and larger organizations were associated with lower quality of Active Support. CONCLUSIONS: In order to ensure that Active Support is consistently implemented, and thus, quality of life outcomes improved, organizations need to pay attention to both service design and support for staff through training and practice leadership.

Development and psychometric evaluation of the Group Home Culture Scale.

BACKGROUND: Organizational culture in group homes for people with intellectual disabilities has been identified as influencing staff behaviour and residents' quality of life (QOL). Despite this influence, culture has been under-researched, with no published and validated instrument to measure its dimensions in group homes. The aim was to develop such a measure. METHOD: The Group Home Culture Scale (GHCS) was developed using a theory-driven approach. Items were generated from the research literature, which were reviewed by experts and tested in cognitive interviews. Data from 343 front-line staff were used for exploratory factor analysis. RESULTS: The content and face validity of the GHCS were found to be acceptable. Exploratory factor analysis indicated that the GHCS measured seven dimensions of group home culture. Cronbach's alpha for the dimensions ranged from 0.81 to 0.92. CONCLUSIONS: The GHCS has potential use in research to determine whether dimensions of group home culture predict the quality of staff support and residents' QOL.

Applying a digital literacy framework and mapping tool to an occupational therapy curriculum.

INTRODUCTION: Amidst claims that rapid technological changes in health far outstrip the capabilities of the health workforce, digital literacy is featured in occupational therapy competency standards. However, little attention have been given to the development of digital literacy in entry-level occupational therapy programmes and the preparation of graduates for digital health. There is a lack of guidance on how universities can demonstrate digital literacy development in occupational therapy students. The aim of this study was to test the usefulness of a digital literacy framework and mapping tool in identifying opportunities for students to develop digital literacy within an entry-level occupational therapy programme. METHODS: Intrinsic case study design was used to test the usefulness of the digital literacy framework and mapping tool. The framework and tool were applied to the curriculum of a large entry-level Australian occupational therapy programme. RESULTS: Through the process of mapping, key insights were developed on how digital literacy was embedded across the occupational therapy curricula. Limited attention was given to the development of student digital literacy in the early years of the programme. In later years, more opportunities were available to develop digital literacy at basic and intermediate levels. Across the programme, there was limited evidence of the development of advanced digital literacy. CONCLUSIONS: The framework and mapping tool were useful in broadening understanding of the concept of digital literacy beyond information communication technologies. The framework and tool can assist those designing or refining occupational therapy curricula to operationalise the notion of digital literacy for practice, and prompt discussion and debate on digital literacy and requirements for students, graduates and occupational therapists in an ever-changing complex health environment.

An exploration of communication within active support for adults with high and low support needs.

BACKGROUND: The aim was to explore the relationship between quality of active support and communication support for people in group homes with high and low support needs. METHODS: Data from 182 service users, 20-81 years (mean = 40), 89 with high support needs, were observed to have either good (n = 142) or poor (n = 40) communication support. Measures were of quality of active support, engagement and staff contact; field notes provided examples of good and poor communication supports. RESULTS: We found a relationship between the quality of communication support and active support. Receiving good communication was associated with higher levels of engagement. Field notes included some examples of appropriate communication supports, but limited use of augmentative and alternative communication (AAC). CONCLUSIONS: Staff show limited use of appropriate communication with people having high support needs who require AAC. Strategies to improve quality of practice are discussed.

Intellectual disability content within tertiary medical curriculum: how is it taught and by whom?

BACKGROUND: Individuals with intellectual disability experience higher rates of physical and mental health conditions compared with the general population, yet have inequitable access to health care services. Improving the workplace capacity of medical professionals to meet the needs of this population is one way to reduce barriers to care and improve health outcomes. Using diverse pedagogy appropriate to learning outcomes to teach medical students about intellectual disability is a necessary step in improving future workplace capacity. However, there is a lack of research into how, and by whom, medical students are taught about intellectual disability. The aim of this study was to investigate this through an audit of Australian medical school curricula. METHODS: The Deans of Australian universities that provide accredited medical degrees (n = 20) were invited by email to participate in a two-phase audit of intellectual disability content in the curricula. Phase 1 (n = 14 schools) involved the Dean's delegate completing a telephone interview or questionnaire regarding medical course structure. If intellectual disability content was identified, a unit coordinator was invited to complete a survey regarding how this content was taught and by whom (Phase 2; n = 12 schools). RESULTS: There was considerable variability across Australian medical schools regarding methods used to teach content about intellectual disability. Didactic teaching methods were most frequently used (62% of units included some form of lecture), but workshops and tutorials were reasonably well represented (34% of units contained one or both). Thirty-six percent of units included two or more teaching methods. Almost all schools (83%) used some problem- and/or enquiry-based learning. Educator backgrounds included medicine, nursing, and allied health. A majority of schools (n = 9, 75%) involved people with intellectual disability designing and teaching content, but the extent to which this occurred was inconsistent. CONCLUSIONS: Renewing curricula around intellectual disability across all medical schools by introducing varied teaching methods and the inclusion of people with intellectual disability would assist students to develop knowledge, skills, attitudes, and confidence in intellectual disability health. Such renewal offers the potential to reduce barriers to service this population regularly face, thereby improving their health outcomes.

A systematic review of research into aided AAC to increase social-communication functions in children with autism spectrum disorder.

Augmentative and alternative communication (AAC) interventions have been shown to be effective in supporting children with autism spectrum disorder (ASD) to communicate, particularly to request preferred items and activities. The aim of this systematic review was to examine the effectiveness of AAC interventions in supporting children to produce a broader range of communicative functions and determine the extent to which these interventions have been evaluated beyond immediate effectiveness to address maintenance, generalization, and social validity. A systematic search and application of inclusion criteria yielded 30 interventions that focused on communication functions beyond object requests. In many of the studies, flaws detracted from the certainty of evidence, and maintenance, generalization, and/or social validity were not addressed. Further research is needed to evaluate the extent to which AAC interventions can support children with ASD to communicate using a variety of communication functions, as well as to demonstrate sustained, transferable, and meaningful change.

Central nervous system medication use in older adults with intellectual disability: Results from the successful ageing in intellectual disability study.

OBJECTIVE: Information on the rates and predictors of polypharmacy of central nervous system medication in older people with intellectual disability is limited, despite the increased life expectancy of this group. This study examined central nervous system medication use in an older sample of people with intellectual disability. METHODS: Data regarding demographics, psychiatric diagnoses and current medications were collected as part of a larger survey completed by carers of people with intellectual disability over the age of 40 years. Recruitment occurred predominantly via disability services across different urban and rural locations in New South Wales and Victoria. Medications were coded according to the Monthly Index of Medical Specialties central nervous system medication categories, including sedatives/hypnotics, anti-anxiety agents, antipsychotics, antidepressants, central nervous system stimulants, movement disorder medications and anticonvulsants. The Developmental Behaviour Checklist for Adults was used to assess behaviour. RESULTS: Data were available for 114 people with intellectual disability. In all, 62.3% of the sample was prescribed a central nervous system medication, with 47.4% taking more than one. Of those who were medicated, 46.5% had a neurological diagnosis (a seizure disorder or Parkinson's disease) and 45.1% had a psychiatric diagnosis (an affective or psychotic disorder). Linear regression revealed that polypharmacy was predicted by the presence of neurological and psychiatric diagnosis, higher Developmental Behaviour Checklist for Adults scores and male gender. CONCLUSION: This study is the first to focus on central nervous system medication in an older sample with intellectual disability. The findings are in line with the wider literature in younger people, showing a high degree of prescription and polypharmacy. Within the sample, there seems to be adequate rationale for central nervous system medication prescription. Although these data do not indicate non-adherence to guidelines for prescribing in intellectual disability, the high rate of polypharmacy and its relationship to Developmental Behaviour Checklist for Adults scores reiterate the importance of continued medication review in older people with intellectual disability.

A scoping review of Australian allied health research in ehealth.

BACKGROUND: Uptake of e-health, the use of information communication technologies (ICT) for health service delivery, in allied health appears to be lagging behind other health care areas, despite offering the potential to address problems with service access by rural and remote Australians. The aim of the study was to conduct a scoping review of studies into the application of or attitudes towards ehealth amongst allied health professionals conducted in Australia. METHODS: Studies meeting inclusion criteria published from January 2004 to June 2015 were reviewed. Professions included were audiology, dietetics, exercise physiology, occupational therapy, physiotherapy, podiatry, social work, and speech pathology. Terms for these professions and forms of ehealth were combined in databases of CINAHL (EBSCO), Cochrane Library, PsycINFO (1806 - Ovid), MEDLINE (Ovid) and AMED (Ovid). RESULTS: Forty-four studies meeting inclusion criteria were summarised. They were either trials of aspects of ehealth service delivery, or clinician and/or client use of and attitudes towards ehealth. Trials of ehealth were largely from two research groups located at the Universities of Sydney and Queensland; most involved speech pathology and physiotherapy. Assessments through ehealth and intervention outcomes through ehealth were comparable with face-to-face delivery. Clinicians used ICT mostly for managing their work and for professional development, but were reticent about its use in service delivery, which contrasted with the more positive attitudes and experiences of clients. CONCLUSION: The potential of ehealth to address allied health needs of Australians living in rural and remote Australia appears unrealised. Clinicians may need to embrace ehealth as a means to radicalise practice, rather than replicate existing practices through a different mode of delivery.

Intellectual disability health content within medical curriculum: an audit of what our future doctors are taught.

BACKGROUND: There is a high burden of unmet health needs for people with intellectual disability. Despite experiencing significantly higher rates of morbidity and mortality compared with the general population, this group faces greater barriers to accessing healthcare. While increasing workplace capacity is one way to reduce this inequitable access, previous research indicates a scarcity of undergraduate teaching in intellectual disability. The aim of the study was to determine the extent and nature of intellectual disability content currently offered within medical degree curricula. METHODS: All Australian universities (n = 20) providing accredited medical training were invited to participate in a two-phase audit via an email invitation to the Dean of each medical school. The Dean's delegate from 14 medical schools completed Phase 1, which involved a questionnaire or telephone interview about the overall medical course structure. Unit coordinators and/or teaching staff from 12 medical schools completed Phase 2, which involved an online survey about intellectual disability content within the curriculum. RESULTS: In Australia, medical school curricula contain a median of 2.55 h of compulsory intellectual disability content. The majority of universities only offer a small amount of compulsory content. Of compulsory units, intellectual disability teaching is minimal in sexual health and emergency medicine (only one unit offered in one school for each). Topics of key relevance in intellectual disability health such as human rights issues, interdisciplinary team work and preventative health are poorly represented in intellectual disability teaching. Elective content varies markedly across universities (1 to 122 h), but emergency medicine, women's health, men's health and many other specialist medicine areas are not represented. Inclusive practice is inconsistent in degree and nature, but a majority of universities (nine) involve people with intellectual disability in the development or delivery of content. CONCLUSIONS: There is a mismatch between the considerable unmet health needs of people with intellectual disability and the inconsistent teaching within medical schools. Future doctors will be better equipped to support the health and wellbeing of people with intellectual disability if curricula are enhanced in this area.

Interactions of pre-symbolic children with developmental disabilities with their mothers and siblings.

BACKGROUND: Depending on the severity of their disabilities, children with Down syndrome (DS) and with cerebral palsy (CP) may remain pre-symbolic for prolonged periods of time. When interacting with pre-symbolic children, communication partners have a role in identifying which of their behaviours are communicative, to be able to respond to those behaviours and maintain reciprocal interaction. To date, most research on these children's communication development has been conducted within the context of mother-child interaction. Seldom have they been observed interacting with other family members, and in interactions other than dyadic, despite these interactions also occurring daily. AIMS: To explore and compare the interaction of mothers and siblings with pre-symbolic children with DS and with CP in dyadic and triadic contexts. METHODS & PROCEDURES: Twelve pre-symbolic children with DS (aged 1;10-5;04 years) and 12 with CP (aged 1;09-5;07 years), and their mothers and siblings participated in this study. They were recruited from early intervention centres from the West Coast of Peninsular Malaysia. Children were observed as they engaged in three play interactions: mother-child, sibling-child and mother-sibling-child (triadic). OUTCOMES & RESULTS: Children produced the most pre-symbolic communicative behaviours during mother-child, followed by triadic and lastly sibling-child interaction, suggesting that the mother's presence encouraged children to communicate. Mothers created a more facilitative communication environment for the children than did siblings, by directing high rates of initiations towards them and by taking turns that paved the way for the child's next turn. Although siblings' low rates of interaction did not provide children with as many opportunities to produce communicative behaviours, it encouraged them to produce high proportions of initiations. During triadic interaction, mothers and siblings had to direct interaction towards two communication partners, causing them to direct less interaction towards the children with DS or CP. There was no significant difference in mother and sibling responsiveness to children's communicative behaviours across interactions and disability types, suggesting that mothers and siblings might have adapted to the children's various early communicative behaviours. CONCLUSIONS & IMPLICATIONS: From this study, it was evident that mothers and siblings of pre-symbolic children with DS and with CP engaged them in reciprocal interaction. Findings on how mothers and siblings influence pre-symbolic children's communication suggest the need to involve them in assessment and intervention for these children.

A systematic review of hospital experiences of people with intellectual disability.

BACKGROUND: People with intellectual disability are at risk of poor hospital experiences and outcomes. The aims were to conduct a content and quality review of research into the acute hospital experiences of both people with intellectual disabilities and their carers, and to identify research gaps. METHOD: A systematic search was conducted of primary research between 2009 and 2013 that addressed the experiences of the target group in general acute care hospitals. Quality appraisal tools yielded scores for quantitative and qualitative studies, and overarching themes across studies were sought. RESULTS: Sixteen studies met inclusion criteria. Quality scores were 6/8 for a survey, and 2/11-9/11 (mean =5.25) for qualitative studies/components. Content analysis revealed seven over-arching themes covering individuals' fear of hospital encounters, carer responsibilities, and problems with delivery of care in hospitals including staff knowledge, skills and attitudes. CONCLUSIONS: Our review of eligible papers revealed that despite 20 years of research and government initiatives, people with intellectual disability continue to have poor hospital experiences. The need for research to identify and investigate care at specific points of encounter across a hospital journey (such as admission, diagnostic testing, placement on a ward, and discharge) as well as to include people with a diversity of disabilities is discussed in terms of potential to influence policy and practice across health and disability sectors.

Facilitated communication and authorship: a systematic review.

Facilitated Communication (FC) is a technique whereby individuals with disabilities and communication impairments allegedly select letters by typing on a keyboard while receiving physical support, emotional encouragement, and other communication supports from facilitators. The validity of FC stands or falls on the question of who is authoring the typed messages--the individual with a disability or the facilitator. The International Society for Augmentative and Alternative Communication (ISAAC) formed an Ad Hoc Committee on FC and charged this committee to synthesize the evidence base related to this question in order to develop a position statement. The purpose of this paper is to report this synthesis of the extant peer-reviewed literature on the question of authorship in FC. A multi-faceted search was conducted including electronic database searches, ancestry searches, and contacting selected authors. The authors considered synopses of systematic reviews, and systematic reviews, which were supplemented with individual studies not included in any prior reviews. Additionally, documents submitted by the membership were screened for inclusion. The evidence was classified into articles that provided (a) quantitative experimental data related to the authorship of messages, (b) quantitative descriptive data on the output generated through FC without testing of authorship, (c) qualitative descriptive data on the output generated via FC without testing of authorship, and (d) anecdotal reports in which writers shared their perspectives on FC. Only documents with quantitative experimental data were analyzed for authorship. Results indicated unequivocal evidence for facilitator control: messages generated through FC are authored by the facilitators rather than the individuals with disabilities. Hence, FC is a technique that has no validity.

Living with stroke during the first year after onset: an instrumental case study exploring the processes that influence adjustment.

PURPOSE: The purpose of the study was to explore the experiences of an individual navigating life in the first year after stroke, with attention to the influence of health professionals on adjustment. METHOD: In-depth interviews were completed at regular intervals with an individual in rural Australia. This longitudinal approach supported the exploration of views over time. Interview transcripts were coded and analysed using strategies consistent with constructivist grounded theory methods. Findings are presented as an instrumental case study. RESULTS: The experience of stroke was one of adjustment to a new reality and of an altered and evolving concept of self: captured within the themes of fragmentation, loss, and reconstruction. Self-efficacy emerged as a driver in the adjustment process. Interactions with health professionals influenced adjustment and impacted on conceptualisations of self and self-efficacy. CONCLUSIONS: Adjustment to stroke necessitated a reconceptualization of self. Relationships and interactions with others emerged as potential facilitators. For health professionals working with people after stroke, knowledge of the adjustment process and attention to practices that affirm personhood and enhance self-efficacy have the potential to facilitate long term outcomes. Processes linked to adjustment are represented visually to guide conceptual understandings and facilitative actions.IMPLICATIONS FOR REHABILITATIONAll interactions with health professionals, including casual or ad hoc interactions, have the potential to influence adjustment after stroke.Health professionals who interact in ways that recognise personhood may have an especially positive influence on processes linked to adjustment.Giving time to listen to personal narratives and reflections may assist with sense-making and support the process of reconceptualising self after stroke.Through bidirectional sharing of experience and ideas, health professionals can facilitate the experience of self-efficacy.

Perspectives from parents of autistic children on participating in early intervention and associated research.

LAY ABSTRACT: Support for autistic children early in life should help them to lead flourishing lives. However, many of the early intervention programmes for young autistic children are time-consuming and costly for families. These programmes are also often conducted in settings that are not closely matched to real life. We spoke to 23 parents (of 22 autistic children) to understand their experiences of their children's involvement in early intervention. Parents told us they were grateful for the opportunity, that they had 'hit the jackpot', and their children had 'gained so much' from the programme. They seemed to value the service because it made them feel safe and secure during an uncertain time in their children's lives. Parents told us they trusted staff, felt that they weren't 'doing it alone', and this 'took that pressure off' and helped them feel empowered. They also spoke of feelings of safety from being linked to the university research programme which offered 'accountability' and 'integrity'. Parents' comments showed a strong commitment to the early intervention model and staff - but also common feelings of abandonment and disempowerment as their child's time with the programme came to an end and they went 'back to the real world' and needed to find new supports for their children. These parents' insights should help to inform the design and delivery of community supports for preschool-aged autistic children and their families, which match the reality of their lived experiences.

Economic Evaluation of Early Interventions for Autistic Children: A Scoping Review.

Many autistic children access some form of early intervention, but little is known about the value for money of different programs. We completed a scoping review of full economic evaluations of early interventions for autistic children and/or their families. We identified nine studies and reviewed their methods and quality. Most studies involved behavioral interventions. Two were trial-based, and the others used various modelling methods. Clinical measures were often used to infer dependency levels and quality-adjusted life-years. No family-based or negative outcomes were included. Authors acknowledged uncertain treatment effects. We conclude that economic evaluations in this field are sparse, methods vary, and quality is sometimes poor. Economic research is needed alongside longer-term clinical trials, and outcome measurement in this population requires further exploration.