Co-Design and Co-Production of a Goal Setting Tool for Autistic Adolescents and Adults.

Background: A review of existing tools suggested a need for a goal setting tool for autistic people that (1) addresses the heterogeneity of autistic people to the greatest degree possible; (2) addresses a broad range of goals in areas including self-care and home living, and social, community, educational, and employment participation; (3) incorporates autism-specific adaptations such as visual supports; (4) facilitates the initial identification of goals; and (5) enables the prioritization of goals. Aim: This project aimed to develop a picture-based card-sort goal setting tool with relevant and comprehensible goal cards using a co-design and co-production process. Methods: The first three of four phases of participatory action research (PAR) used to develop the tool are presented, including (1) initial design by autistic people and professional practitioners, and co-production with an autistic graphic designer; (2) survey of 15 autistic people and 11 family members to evaluate and refine the goals, pictures, and wording; (3) second survey of 23 autistic people and 19 family members to re-evaluate and re-refine the goals, pictures, and wording. Results: Responses to open-ended survey questions recommended changing many of the pictures and some of the words on the goal cards. As the majority of respondents rated each of the 72 goals as important, they were all retained. The mean percentage approval of the pictures improved from 78% for survey 1 to 86% for survey 2. The mean percentage approval of the wording improved from 87% for survey 1 to 97% for survey 2. Conclusions: The use of a co-design and co-production methodology over three phases of PAR involving autistic people and their families resulted in many refinements to the goal cards. These iterations in the design process maximized the extent to which the goal cards are easily understood and relevant to the needs of autistic people.

Why is this an important issue?: Autistic adolescents and adults are often asked to identify their goals during planning meetings about their support services. However, the goal setting tools that exist often do not provide enough support to autistic people to come up with goals that are important to them and to explain them to others. We developed the Adolescent Adult Goal Setting Tool (AAGST) with, and for autistic people to help them set goals that are meaningful and important. What was the purpose of this study?: We developed a set of cards with pictures that autistic people could sort into piles including a "Yes­now" pile for goals they want to work on, a "No" pile for goals they do not want to work on, or a "Maybe" for goals they are not sure about. The autistic person then chooses between one and six of the most important goals from the "Yes­now" pile and places them in order from most to least important. They are then supported to put their goals into their own words and develop a plan for achieving their goals. The purpose of this study was to gather the opinions of autistic people and their family members on the goals, and the words and pictures on the cards. What did the researchers do?: We wanted to develop a set of goals that are relevant to autistic people, and goal cards with pictures and words that autistic people with a range of ages, skills, and interests can easily understand. Autistic people helped us develop the first set of the cards. We then used a survey to ask 15 autistic people and 11 family members for feedback on the cards. We modified the cards based on their feedback. We used a second survey to gather feedback from a further 23 autistic people and 19 family members. We modified the cards again according to their feedback. What were the results of the study?: Most of the autistic people and their family members rated the 72 goals as important. Based on their feedback, we modified 43 pictures, developed 8 new pictures, and changed the wording on 4 cards. On average, 97% of people who completed the second survey thought that the wording was clear and 86% thought that the pictures were clear. What do these findings add to what was already known?: Extensive feedback from autistic people and their families helped us to develop a goal setting tool to suit autistic people with a range of ages, skills, and interests. What are potential weaknesses in the study?: We do not know if the goal cards are suitable for autistic people who use methods to communicate other than speech (e.g., sign language or symbols) or autistic people from other countries or cultures. Future studies should include these people. How will these findings help autistic adults now or in the future?: The Adolescent Adult Goal Setting Tool supports autistic people to express their wishes during planning meetings, giving them more choice and control over their futures.

Non-pharmacological interventions for autistic children: An umbrella review.

LAY ABSTRACT: What is already known about the topic?The delivery of evidence-based interventions is an important part of the clinical pathway for many autistic children and their families. However, parents, practitioners, and policymakers face challenges making evidence informed decisions, due to the wide variety of interventions available and the large, and often inconsistent, body of evidence regarding their effectiveness.What this paper adds?This is a comprehensive umbrella review, also known as a 'review of reviews', which examined the range of interventions available, the evidence for their effectiveness, and whether effects were influenced by factors relating to individual children (e.g. chronological age, core autism characteristics, and related skills) or the ways interventions were delivered (by whom and in what setting, format, mode, and amount). There was evidence for positive therapeutic effects for some, but not all, interventions. No single intervention had a positive effect for all child and family outcomes of interest. The influence of child and delivery characteristics on effects was unclear.Implications for practice, research, and policyThe findings provide parents, practitioners, and policymakers with a synthesis of the research evidence to inform decision-making and highlight the importance of individualised approaches in the absence of clear and consistent evidence. The findings also highlight the need to improve consistency and completeness in reporting of research studies, so that the same questions may be answered more comprehensively in the future.

An evidence-based framework for determining the optimal amount of intervention for autistic children.

The provision of timely, effective, and socially valid non-pharmacological intervention is at the core of efforts to support the development of young autistic children. These efforts are intended to support children to develop skills, empower their caregivers, and lay the foundation for optimal choice, independence, and quality of life into adulthood. But what is the optimal amount of intervention? In this Viewpoint, we review current guidelines and consider evidence from an umbrella review of non-pharmacological interventions for autistic children aged up to 12 years. We show the lack of consensus on the issue, identify factors that might be relevant to consider, and present an evidence-based framework for determining the optimal amount of intervention for each child, along with recommendations for future research.

A preliminary investigation of sound-field amplification as an inclusive classroom adjustment for children with and without Autism Spectrum Disorder.

PURPOSE: This study aimed to determine if sound-field amplification (SFA) could be used as an inclusive classroom adjustment to support primary school students with and without Autism Spectrum Disorder (ASD). METHODS: A two-group, randomised controlled trial (RCT) with crossover was conducted involving 13 students with ASD (9 males, aged 7.6 to 8.4 years) and 17 typically progressing students without ASD (7 males, aged 7.6 to 9.3 years) from 10 primary schools in and near to Brisbane, Australia. Eighteen of these children had an SFA system in their classrooms in semester one and 12 in semester two of their fourth year of formal schooling (Year 3). Potential proximate benefits were assessed using teacher questionnaire and video analysis of student listening behaviours. Potential distant benefits were assessed using measures of phonological processing in quiet and in noise, attention, memory, and educational achievement. RESULTS: Potential proximate benefits were observed for all students with teachers rating student listening behaviours higher with SFA versus without SFA. Potential distant benefits were observed for students with ASD who showed greater improvements in one area of phonological processing (blending nonsense words in noise) following SFA versus no SFA. No other potential proximate or distant benefits following SFA were observed. CONCLUSIONS: SFA could be used as an inclusive classroom adjustment to support some primary school students with and without ASD by potentially putting those students in a better position to learn, but their learning must still take place over time and realistic expectations of what can reasonably be achieved by SFA alone are needed.

Improving Transfer of Learning: An Innovative Comentoring Program to Enhance Workplace Implementation After an Occupational Therapy Course on Autism Spectrum Disorders.

INTRODUCTION: Research suggests that learning gained through training is infrequently implemented in the workplace. A short-term postcourse comentoring program was developed with the aim of facilitating workplace implementation of learning after a 3-day course for occupational therapists. The program was evaluated for usefulness, successes, challenges, recommended improvements, and associations with changes in self-rated knowledge and confidence. METHOD: Two months after the course, 42 participants completed an evaluation of the comentoring program with closed- and open-ended questions addressing usefulness, successes, challenges, pairing preferences, and recommendations. They also completed a record on whether or not they had worked on goals nominated in their comentoring contract. Before and 2 months after the course, they completed a self-rated questionnaire on knowledge and confidence. RESULTS: The comentoring program was recommended by 80% of participants. Benefits included opportunities for information and resource sharing, debriefing, problem solving, reassurance, and implementation of ideas. Ninety-five percent of participants worked on some or all their comentoring goals. Although there were significant improvements in knowledge (P < 0.001) and confidence (P < 0.001), the total comentoring evaluation score was not significantly associated with these changes. It is therefore possible that these improvements related to the course itself rather than the comentoring program. Challenges related to time, scheduling, distance, and pairing of comentors. CONCLUSION: Reported benefits of the program included enhanced psychosocial support and prompting to trial newly learned strategies. Effectiveness may be improved by setting aside time for comentoring in the workplace and better matching of comentors.

Optimizing participation of children with autism spectrum disorder experiencing sensory challenges: a clinical reasoning framework.

BACKGROUND: Remedial sensory interventions currently lack supportive evidence and can be challenging to implement for families and clinicians. It may be timely to shift the focus to optimizing participation of children with autism spectrum disorders (ASD) through accommodation and self-regulation of their sensory differences. PURPOSE: A framework to guide practitioners in selecting strategies is proposed based on clinical reasoning considerations, including (a) research evidence, (b) client- and family-centredness, (c) practice contexts, (d) occupation-centredness, and (e) risks. KEY ISSUES: Information-sharing with families and coaching constitute the basis for intervention. Specific strategies are identified where sensory aversions or seeking behaviours, challenges with modulation of arousal, or sensory-related behaviours interfere with participation. Self-regulatory strategies are advocated. The application of universal design principles to shared environments is also recommended. IMPLICATIONS: The implications of this framework for future research, education, and practice are discussed. The clinical utility of the framework now needs to be tested.

Comment on: 'An intervention for sensory difficulties in children with autism: a randomized trial' by Schaaf et al. (2013).

The purpose of this letter to the editor is to comment on a recently published paper in the Journal of Autism and Developmental Disorders, 'An Intervention for Sensory Difficulties in Children with Autism: A Randomized Trial' by Schaaf et al. (2013). The authors are commended for undertaking a randomised clinical trial (RCT) examining the efficacy of occupational therapy using sensory integration (OT/SI). The study complies with many of the recommended standards of RCT's including: (a) detailed eligibility criteria, (b) well-matched experimental and control groups, (c) use of gold-standard instruments to measure the symptoms of autism spectrum disorder, (d) the use of functionally relevant outcome measures, (e) fidelity checking, and (f) manualization of the intervention. Additional aspects of rigour that could be considered in subsequent research include: (a) independent blinded measure of observational outcomes, (b) treatment and control interventions of equivalent dose, (c) public access to the manualized treatment guidelines, and (d) the use of a comparison occupational therapy intervention to address the same goals as the OT/SI intervention.

Occupational therapy services for people with autism spectrum disorders: current state of play, use of evidence and future learning priorities.

BACKGROUND: A dramatic increase in the prevalence of autism spectrum disorders and increased funding to support children with autism spectrum disorders have added to the demand for occupational therapy services. This study explored current practices and future learning priorities of Queensland occupational therapists who work in this field. METHOD: A survey in relation to occupational therapy services for people with autism spectrum disorders was distributed to all registered Queensland occupational therapists (N=2547). The development of the survey was informed by a series of focus groups comprising occupational therapy clinicians, supervisors and academics. The survey covered demographics, caseload composition, collaboration, context/setting, service-delivery models, information gathering, goal setting, interventions, perceived challenges and confidence, use of evidence, and experience of professional development and support, and future learning priorities. RESULTS: Of 818 surveys returned, 235 respondents provided services to clients with autism spectrum disorders, with young children being more likely to receive a service than adolescents or adults. A pervasive focus on sensory processing was apparent in relation to assessment, intervention, and key areas of knowledge. Around half the respondents indicated that they lacked confidence at least some of the time. Autism spectrum disorders-specific experience was a significant predictor of confidence. Many therapists reported challenges in finding useful information in the literature and reliance on conferences or workshops as their main source of evidence. Commonly identified learning priorities included new developments in the field, early intervention, school support, sensory processing and clinical reasoning. CONCLUSION: This research highlights the need for comprehensive autism spectrum disorders-specific, face-to-face training focusing on evidence-based and occupation-centred practices.

Understanding the sensory experiences of young people with autism spectrum disorder: a preliminary investigation.

BACKGROUND/AIM: Unusual responses to sensations can impact upon the daily activities for individuals with autism spectrum disorder. Current understandings of these sensory experiences have been drawn from the proxy reports from parents/caregivers, standardised self-report questionnaires and autobiographical accounts. As sensory experiences are intensely personal, the first-hand accounts of people with autism spectrum disorder may have greater validity than caregiver reports, but these have never been systematically researched. This study explored the utility of using a semi-structured interview protocol augmented with visual cues to facilitate our understanding of the way people with autism spectrum disorder experience sensory input, and use coping strategies to manage sensory issues that interfere with participation. METHOD: A semi-structured interview augmented by visual cues was used to investigate the sensory experiences of three adolescent males with autism spectrum disorder. As is common in this population, two of the participants also had a diagnosis of Attention Deficit Hyperactivity Disorder and were taking stimulant medication. RESULTS: Participants shared a preference for expected, predictable and controllable sensory input, whereas unexpected, unpredictable and uncontrollable sensations were perceived as unpleasant. A heightened awareness of and difficulty filtering extraneous sensory input, high levels of movement seeking and an over-focus on salient sensory input were also described. Strategies employed to manage sensory challenges included avoiding, increasing predictability and control and meta-cognitive adaptations. CONCLUSIONS: Further research involving a larger sample of participants is recommended to determine the utility of using a semi-structured interview protocol augmented with visual cues to understand the sensory experiences of individuals with high-functioning autism spectrum disorder.

Sensory processing and classroom emotional, behavioral, and educational outcomes in children with autism spectrum disorder.

OBJECTIVE: We explored the associations between sensory processing and classroom emotional, behavioral, and educational outcomes of children with autism spectrum disorder (ASD). METHOD: Twenty-eight children with ASD (with average-range IQ) were compared with 51 age- and gender-matched typically developing peers on sensory processing and educational outcomes. RESULTS: For children with ASD, the Short Sensory Profile scores Underresponsive/Seeks Sensation and Auditory Filtering explained 47% of the variance in academic performance, yet estimated intelligence was not a significant predictor of academic performance. Significant negative correlations were found between (1) auditory filtering and inattention to cognitive tasks, (2) tactile hypersensitivity and hyperactivity and inattention, and (3) movement sensitivity and oppositional behavior. CONCLUSION: A pattern of auditory filtering difficulties, sensory underresponsiveness, and sensory seeking was associated with academic underachievement in the children with ASD. Children who have difficulty processing verbal instructions in noisy environments and who often focus on sensory-seeking behaviors appear more likely to underachieve academically.