Low-intensity parent- and clinician-delivered support for young autistic children in Aotearoa New Zealand: a randomised controlled trial.

Background: Aotearoa New Zealand does not provide publicly-funded intensive autism support. While parent-mediated supports are promising, children and families may also benefit from direct clinician support. We tested the efficacy of a low-intensity programme involving parent- and clinician-delivered support for autistic children. Methods: This single-blind, two-arm randomised controlled trial assessed outcomes of a six-month low-intensity parent- and clinician-delivered support (2-3 h per week) based on the Early Start Denver Model compared to a control group who received monthly support calls and assistance with referrals. Children aged 1-4.5 years who were autistic or showing signs of autism and their parents were randomised to the low-intensity or control group by a blinded statistician using the Urn minimisation method. Assessments were conducted at baseline and immediately following the support period (24-weeks post-baseline). The primary outcome was child engagement during an interaction with their parent. The trial was pre-registered with ANZCTR: U1111-1260-2529. Findings: From March 2021 to May 2023, 56 families were randomised to either the low-intensity or control group. Following drop-outs, 21 families in the low-intensity group and 24 in the control group were included in analysis. There was large and significantly greater improvement in children's engagement in the low-intensity group compared to the control group (F (1, 43) = 21.47, p < 0.0001, ηp 2 = 0.33). There was one recorded adverse event unrelated to the support and two adverse effects related to the support. Interpretation: A low-intensity parent- and clinician-delivered support can improve engagement between an autistic child and their parent during play. Low-intensity supports may be beneficial in areas where access to clinical autism supports is limited. Funding: Emerging Researcher First Grant from the Health Research Council of New Zealand.

Autistic Co-Led Community Priorities for Future Autism Research in Aotearoa New Zealand.

Background: Previous studies of community priorities for autism research have been limited by low representation of autistic people and thus a bias toward the views of families and professionals. We aimed to determine the first community-led priorities for autism research in Aotearoa New Zealand (NZ). Methods: Autistic people were essential partners in the project, from inception and design through to methods and outputs. We gathered the views of the autistic and autism communities (including family, practitioners, and researchers) through focus groups (n = 55) and an online survey (n = 450). Almost 40% of the survey respondents indicated that they were autistic. Results: The findings across the focus groups and survey highlighted the importance of research that centralizes the experiences and needs of autistic people, particularly of autistic New Zealanders, including culturally specific research for Maori and Pacific peoples. All five priority topics for autistic adults were also priorities for at least one other group: (1) Health, mental health, and well-being of autistic people (all groups); (2) Services across the life span (autistic adults, health care/disability, and education practitioners); (3) Needs of autistic people in Aotearoa NZ (autistic adults, whanau); (4) Perspectives from autistic people with a diverse range of support needs (autistic adults; education practitioners); (5) Quality of life of autistic people in Aotearoa NZ (autistic adults; health care/disability practitioners). Conclusions: We discuss the advantages of autistic involvement in research, and how these community priorities can inform future research and policy in NZ.

Why is this an important issue? There are no previous autism research priorities for Aotearoa New Zealand that have been determined by the autistic and autism communities. The population characteristics and social and cultural context of Aotearoa New Zealand (NZ) are unique. What was the purpose of this study? We wanted to find out what the autistic and autism communities think future autism research should focus on. What did the researchers do? Autistic people were essential partners in this project and contributed to the design, methods, and outputs. We carried out focus groups and an online survey of autistic people and members of the broader autism community (family, practitioners, and researchers) in NZ. In the focus groups, we asked 55 people what they thought future autism research in NZ should focus on. Three researchers (one autistic and two non-autistic) analyzed the focus group data. They read the written transcripts of the focus groups. Then, they met multiple times to talk about what they thought the ideas were and agree on the final ideas (themes). In the online survey, we asked 450 people to rate how important different autism research topics were to them. To analyze the survey data, two researchers looked at how important each autism research topic was for different community groups, including autistic adults, family, practitioners, and researchers. What were the results of the study? The results showed that the community thought future autism research should focus on the experiences of autistic people, particularly of autistic New Zealanders. Community members also thought that it was important that there is autism research that is specific to NZ, including culturally specific research for Maori and Pacific peoples. The five topics rated as most important by autistic adults were also priorities for at least one other group of people from the autism community (e.g., practitioners). Health, mental health, and well-being of autistic people was a priority topic for all groups. What do these findings add to what was already known? These findings tell us what autistic adults think is important for future autism research in NZ to focus on. The findings also show us the similarities and differences between what autistic adults think is important for future autism research, and what other people in the broader autism community think is important. What are the potential weaknesses in the study? The focus groups and online survey may not have been accessible to everyone who would like to take part. So we may have missed the opinion of some people. How will these findings help autistic adults now or in the future? We have determined what is important to autistic people and the broader autism community for future autism research. We can use this information to inform future autism research in NZ. Funding bodies can use this information to inform their decisions about funding for autism research. We hope that the way we included autistic adults in this project will also inspire other autism research in NZ, which will make autism research more appropriate, relevant, and ethical.

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

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

Association Between High-Need Education-Based Funding and School Suspension Rates for Autistic Students in New Zealand.

Importance: Autistic students often experience poor educational outcomes that have implications for later life, including unemployment, interactions with the criminal justice system, increased risk for substance abuse, and low socioeconomic status. Improving educational outcomes is critical for ensuring that autistic young people can reach their potential. Objective: To quantify differences in suspension rates between autistic and nonautistic students and to assess whether high-need education-based funding for autistic students is associated with reduced rates of school suspension. Design, Setting, and Participants: This national cohort study used linked health and education data from New Zealand's Integrated Data Infrastructure. Data were obtained for students aged 5 to 16 years from January 1 to December 31, 2018, and analyzed July 7, 2021, to January 1, 2022. A novel case identification method was used to identify autistic students. Exposures: High-need education-based funding (Ongoing Resourcing Scheme [ORS]) obtained before 2019. Main Outcomes and Measures: Rates of suspension from school. Crude and adjusted analyses of the association between suspension rates and autism among the full population with adjustment made for sociodemographic characteristics (sex, age, ethnicity, deprivation, and urban or rural profile of residence) were conducted using complete-case, 2-level random intercept logistic multivariable regressions. To assess the association between ORS funding and suspension, analysis was restricted to autistic students. Results: Of the 736 911 students in the study population, 9741 (1.3%) were identified as autistic (median [SD] age, 10 [3.2] years; 7710 [79.1%] boys), and 727 170 (98.7%) as nonautistic (median [SD] age, 10 [3.4] years; 369 777 [50.9%] boys). School suspension was experienced by 504 autistic students (5.2%) and 13 845 nonautistic students (1.9%). After adjustment for demographic characteristics, autistic students had significantly higher odds of suspension than their nonautistic peers (adjusted odds ratio, 2.81; 95% CI, 2.55-3.11). Of the 9741 autistic students, 2895 (29.7%) received high-need education-based (ORS) funding. Suspensions were experienced by 57 autistic students (2.0%) with high-need funding and 447 autistic students (6.5%) without high-need funding. After adjustment for demographic characteristics, co-occurring conditions, and level of disability support need, autistic students with high-need funding had significantly lower odds of suspension than autistic students without high-need funding (adjusted odds ratio, 0.29; 95% CI, 0.21-0.40). Conclusions and Relevance: In this cohort study, the findings of disparities in suspension rates between autistic and nonautistic students underscore the challenges faced in providing inclusive education for all young people, regardless of disability status. This study found that high-need funding was associated with reduced suspension rates among autistic students, suggesting that if appropriate supports are afforded to autistic students, a more inclusive education can be provided.

Effects of a low-intensity Early Start Denver Model-based intervention delivered in an inclusive preschool setting.

The Early Start Denver Model (ESDM) is a promising early intervention for promoting improved social, cognitive, and communication outcomes for young children with autism spectrum disorder (ASD). However, most studies evaluating group-based delivery of this program have used 15-25 h per week of intervention in specialized ESDM preschools with low child-teacher ratios. Thus, the positive results from such studies might not be obtained when this intervention model is evaluated in more typical inclusive preschool settings. In this study, a low-intensity version of the ESDM was delivered to three young children with ASD in their regular inclusive preschool by a certified therapist who did not typically work at any of the preschools. The intervention procedures were implemented for 3 h per week over an 8- to 10-week period. Data were gathered on children's levels of participation, imitation, and communication from weekly 10-min video recordings. The effects of the intervention were evaluated using a multiple probe across participants design with 3 weekly follow-up probes, 3 weeks after the intervention ended. All participants showed improvement in active participation, imitation and either intentional vocalizations or spontaneous functional utterances. These results were generally maintained at follow-up. This low-intensity version of the ESDM would seem effective for use in real-world preschool environments.

Brief Report: Training New Zealand Well Child/Tamariki Ora Nurses on Early Autism Signs Using the Social Attention and Communication Surveillance-Revised.

Universal developmental surveillance is considered best practice for early identification of autism. We analysed data from 175 New Zealand Well-Child/Tamariki Ora nurses who attended a 1-day training in developmental surveillance for autism using the social attention and communication surveillance-revised (SACS-R) tool. We used a survey to measure nurses' knowledge of typical development, knowledge of early signs of autism, general autism knowledge, and confidence in identifying and discussing early signs, prior to the workshop, after the workshop, and at follow-up. We measured perceived acceptability of the SACS-R after the workshop and at follow-up. Nurses showed improvements on all measures from pre-workshop to post-workshop and pre-workshop to follow-up. Implementation of the SACS-R across different contexts appears feasible and acceptable.

A Survey of Autistic Adults from New Zealand on the Autism Diagnostic Process During Adolescence and Adulthood.

The diagnostic experiences of autistic adults in New Zealand have not been investigated and little is known globally about autistic adults' satisfaction with the autism diagnostic process. This study describes the diagnostic experiences of 70 autistic adults living in New Zealand and explores how these experiences are related to satisfaction during three stages of the diagnostic process. The results show that autistic adults were reasonably satisfied with the early query and diagnostic assessment stages, but were dissatisfied with the post-diagnostic support stage, with significant unmet needs. Dissatisfaction during the post-diagnostic support stage was also related to satisfaction during previous stages and poor coordination of supports. Suggestions are made on how to improve the autism diagnostic pathway for autistic adults in New Zealand.

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

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

Examining parent use of specific intervention techniques during a 12-week training program based on the Early Start Denver Model.

LAY ABSTRACT: Parents of young children with autism are often taught to deliver interventions which involve several different types of strategies. Research suggests that parents can usually learn to deliver these interventions but not much is known about their use of each specific intervention strategy. This study included five mothers of young children with autism who participated in a 12-week parent training program based on the Early Start Denver Model. We measured their use of 18 different ESDM strategies before, during, and 1 month after the training program. We found that parents increased the number of strategies that they used during the training program. There were differences between mothers in terms of the ESDM strategies that they used the most during the training. We also found that some of the strategies were more closely related to children's levels of engagement and language than others. This suggests that parent training should be adapted to suit each parent's needs.

Evaluation of a low-intensity version of the early start Denver model with four preschool-aged boys with autism spectrum disorder.

OBJECTIVES: Data indicate that some developmentally and behaviorally based early intervention programs can lead to a range of improvements in children with autism spectrum disorder. However, many such programs call for a fairly intensive amount of intervention. The objective of this preliminary study was to evaluate the effectiveness of a low-intensity therapist delivered intervention for young children with autism spectrum disorder. METHODS: The study evaluated the outcomes of 3 hours per week of therapist-delivered early start Denver model intervention (ESDM) over a 12-week period for four preschool-aged boys with autism spectrum disorder. The effects of intervention on communication, imitation, and engagement were evaluated using a non-concurrent multiple probe across participants design. RESULTS: Following the intervention, all four children showed increases in imitation, engagement, and either functional utterances or intentional vocalizations. These results were maintained after 4 weeks and mostly generalized to each child's mother. CONCLUSION: These preliminary results suggest that low-intensity therapist delivered ESDM intervention may be of some benefit to children with autism spectrum disorder.

Supporting parents in the use of the early start Denver model as an intervention program for their young children with autism spectrum disorder.

Parents are the logical intervention agents for young children with autism spectrum disorder (ASD). The early start Denver model (ESDM) is a promising early intervention approach for children with ASD that can be implemented by parents. This study evaluated the effects of training parents in the use of the ESDM. We used a non-concurrent multiple probe across participants design to evaluate the effects of providing five mothers of young children with ASD with one hour per week of training for 12 weeks. Outcome measures included mothers use of the ESDM techniques and measures of the children's levels of engagement and imitation, and expressive language skills. Maintenance of outcomes after one month was also assessed. Results showed four of the five mothers increased the percentage of ESDM techniques that they were using usually or consistently. Four of the five children showed some improvement on at least one of the child outcome measures. This suggests mixed results for supporting parents in the use of the ESDM. Implications and future research directions are discussed.

Training Direct-Care Staff to Provide Communication Intervention to Adults With Intellectual Disability: A Systematic Review.

PURPOSE: The aim of this review was to summarize and evaluate studies on training direct-care staff to provide communication intervention to adults with intellectual disability. METHOD: Systematic searches identified 22 studies. These were summarized and evaluated in terms of (a) participants; (b) settings; (c) training aims and procedures; (d) research designs; (e) reliability, integrity, and social validity; (f) outcomes; (g) generalization and follow-up; and (h) certainty of evidence. RESULTS: A total of 437 staff and 254+ adults with intellectual disability participated. Staff training most frequently involved combinations of verbal instruction, role play, modeling, practice, and feedback. Reliability was assessed in 18 studies with acceptable standards for most of these studies. Treatment integrity and social validity were assessed in 1 and 3 studies, respectively, with positive outcomes. Generalization and maintenance were assessed in 5 and 8 studies, respectively, with predominantly positive outcomes. Most studies reported positive outcomes for staff and positive or mixed outcomes for the adults with intellectual disability. Certainty of evidence was rated as conclusive in 1 study, suggestive in 14 studies, and inconclusive in 7 studies. CONCLUSIONS: There is sufficient evidence to conclude that direct-care staff can be taught to provide effective communication intervention to adults with intellectual disability. Professionals involved in providing training and support to direct-care staff could expect positive outcomes from multicomponent training programs that include opportunities for practice and feedback.

Research note: attitudes of teachers and undergraduate students regarding three augmentative and alternative communication modalities.

The social validity of different communication modalities is a potentially important variable to consider when designing augmentative and alternative communication (AAC) interventions. To assess the social validity of three AAC modes (i.e., manual signing, picture exchange, and an iPad®-based speech-generating device), we asked 59 undergraduate students (pre-service teachers) and 43 teachers to watch a video explaining each mode. They were then asked to nominate the mode they perceived to be easiest to learn as well as the most intelligible, effective, and preferred. Participants were also asked to list the main reasons for their nominations and report on their experience with each modality. Most participants (68-86%) nominated the iPad-based speech-generating device (SGD) as easiest to learn, as well as the most intelligible, effective, and preferred. This device was perceived to be easy to understand and use and to have familiar and socially acceptable technology. Results suggest that iPad-based SGDs were perceived as more socially valid among this sample of teachers and undergraduate students. Information of this type may have some relevance to designing AAC supports for people who use AAC and their current and future potential communication partners.

Undergraduates' perceptions of three augmentative and alternative communication modes.

OBJECTIVE: To assess undergraduates' perceptions of three augmentative and alternative communication (AAC) modes. METHOD: We showed 104 undergraduates a video clip of a person using each of the three AAC modes and asked them to rate each option in terms of perceived (a) intelligibility, (b) ease of acquisition, (c) effectiveness/acceptability, and (d) preference. The three AAC modes shown were (a) manual signing, (b) picture exchange, and (c) speech-generating device. RESULTS: Mean ratings for perceived intelligibility and effectiveness/acceptability were significantly higher for the speech-generating device. The speech-generating device and manual signing options were rated as being more preferred over picture exchange. Picture exchange was rated significantly higher on perceived ease of acquisition. CONCLUSION: Speech-generating devices were perceived to have greater social validity than manual signing and picture exchange.

Comparison of therapist implemented and iPad-assisted interventions for children with autism.

OBJECTIVE: This study compares intervention delivered by a therapist to intervention delivered using an iPad for two children with autism. Further, this study evaluates the influence of choice between the conditions. METHODS: Time on-task, challenging behaviour, session duration and correct responses were compared across conditions in an alternating treatment design. The effect of choice was evaluated in an ABAB design. RESULTS: The iPad was associated with shorter intervention sessions, more time on-task and less challenging behaviour for one participant. There was no difference between conditions for the second participant. Both participants selected the iPad when given the choice and, although the effect of choice was modest, choosing was associated with more time on-task and less challenging behaviour. CONCLUSIONS: These data suggest that iPad-assisted intervention can be as effective as therapist-implemented intervention. Further, even for children for whom no differences between the interventions exist, offering a choice may be beneficial.

An evaluation of speech production in two boys with neurodevelopmental disorders who received communication intervention with a speech-generating device.

BACKGROUND: Children with neurodevelopmental disorders often present with little or no speech. Augmentative and alternative communication (AAC) aims to promote functional communication using non-speech modes, but it might also influence natural speech production. METHOD: To investigate this possibility, we provided AAC intervention to two boys with neurodevelopmental disorders and severe communication impairment. Intervention focused on teaching the boys to use a tablet computer-based speech-generating device (SGD) to request preferred stimuli. During SGD intervention, both boys began to utter relevant single words. In an effort to induce more speech, and investigate the relation between SGD availability and natural speech production, the SGD was removed during some requesting opportunities. RESULTS: With intervention, both participants learned to use the SGD to request preferred stimuli. After learning to use the SGD, both participants began to respond more frequently with natural speech when the SGD was removed. CONCLUSION: The results suggest that a rehabilitation program involving initial SGD intervention, followed by subsequent withdrawal of the SGD, might increase the frequency of natural speech production in some children with neurodevelopmental disorders. This effect could be an example of response generalization.

Three children with autism spectrum disorder learn to perform a three-step communication sequence using an iPad®-based speech-generating device.

BACKGROUND: Many children with autism spectrum disorder (ASD) have limited or absent speech and might therefore benefit from learning to use a speech-generating device (SGD). The purpose of this study was to evaluate a procedure aimed at teaching three children with ASD to use an iPad(®)-based SGD to make a general request for access to toys, then make a specific request for one of two toys, and then communicate a thank-you response after receiving the requested toy. METHOD: A multiple-baseline across participants design was used to determine whether systematic instruction involving least-to-most-prompting, time delay, error correction, and reinforcement was effective in teaching the three children to engage in this requesting and social communication sequence. Generalization and follow-up probes were conducted for two of the three participants. RESULTS: With intervention, all three children showed improvement in performing the communication sequence. This improvement was maintained with an unfamiliar communication partner and during the follow-up sessions. CONCLUSION: With systematic instruction, children with ASD and severe communication impairment can learn to use an iPad-based SGD to complete multi-step communication sequences that involve requesting and social communication functions.

Tangible Symbols as an AAC Option for Individuals with Developmental Disabilities: A Systematic Review of Intervention Studies.

We reviewed nine studies evaluating the use of tangible symbols in AAC interventions for 129 individuals with developmental disabilities. Studies were summarized in terms of participants, tangible symbols used, communication functions/skills targeted for intervention, intervention procedures, evaluation designs, and main findings. Tangible symbols mainly consisted of three-dimensional whole objects or partial objects. Symbols were taught as requests for preferred objects/activities in five studies with additional communication functions (e.g., naming, choice making, protesting) also taught in three studies. One study focused on naming activities. With intervention, 54% (n = 70) of the participants, who ranged from 3 to 20 years of age, learned to use tangible symbols to communicate. However, these findings must be interpreted with caution due to pre-experimental or quasi-experimental designs in five of the nine studies. Overall, tangible symbols appear promising, but additional studies are needed to establish their relative merits as a communication mode for people with developmental disabilities.

Comparing acquisition of and preference for manual signs, picture exchange, and speech-generating devices in nine children with autism spectrum disorder.

OBJECTIVE: To compare how quickly children with autism spectrum disorder (ASD) acquired manual signs, picture exchange, and an iPad/iPod-based speech-generating device (SGD) and to compare if children showed a preference for one of these options. METHOD: Nine children with ASD and limited communication skills received intervention to teach requesting preferred stimuli using manual signs, picture exchange, and a SGD. Intervention was evaluated in a non-concurrent multiple-baseline across participants and alternating treatments design. RESULTS: Five children learned all three systems to criterion. Four children required fewer sessions to learn the SGD compared to manual signs and picture exchange. Eight children demonstrated a preference for the SGD. CONCLUSION: The results support previous studies that demonstrate children with ASD can learn manual signs, picture exchange, and an iPad/iPod-based SGD to request preferred stimuli. Most children showed a preference for the SGD. For some children, acquisition may be quicker when learning a preferred option.

Developmental profile of speech-language and communicative functions in an individual with the preserved speech variant of Rett syndrome.

OBJECTIVE: We assessed various aspects of speech-language and communicative functions of an individual with the preserved speech variant of Rett syndrome (RTT) to describe her developmental profile over a period of 11 years. METHODS: For this study, we incorporated the following data resources and methods to assess speech-language and communicative functions during pre-, peri- and post-regressional development: retrospective video analyses, medical history data, parental checklists and diaries, standardized tests on vocabulary and grammar, spontaneous speech samples and picture stories to elicit narrative competences. RESULTS: Despite achieving speech-language milestones, atypical behaviours were present at all times. We observed a unique developmental speech-language trajectory (including the RTT typical regression) affecting all linguistic and socio-communicative sub-domains in the receptive as well as the expressive modality. CONCLUSION: Future research should take into consideration a potentially considerable discordance between formal and functional language use by interpreting communicative acts on a more cautionary note.