Investigating the impact of autistic children's feeding difficulties on caregivers.

AIM: The aim of this study was to investigate the influence of children's autism characteristics, sensory profiles and feeding difficulties on caregiver-reported impact at mealtimes. BACKGROUND: Caregivers of children (5-12 years) with a diagnosis of Autism Spectrum Disorder completed an online survey examining (a) demographic characteristics, (b) children's autism characteristics (Social Communication Questionnaire), (c) sensory profiles (Sensory Profile 2-short form), (d) feeding difficulties (Behavioural Paediatrics Feeding Assessment Scale, BPFAS) and (c) caregiver-reported impact of feeding difficulties (Feeding-Swallowing Impact Survey, FS-IS). RESULTS: Seventy-eight caregivers completed surveys for 80 children. Children with clinically significant feeding difficulties on the BPFAS (n = 55, 68.8%) had higher levels of caregiver-reported impact on daily activities, worry and feeding difficulties compared to children without clinically significant feeding difficulties (FS-IS; U = 257.000, z = -4.471, p < 0.01). Spearman's rank correlation showed a statistically significant, moderate correlation between BPFAS total frequency score and FS-IS Daily activities score, rs (98) = 0.56, p < 0.01, indicating that as the frequency of feeding difficulties increased, the impact of these feeding difficulties on caregivers also increased. Using multiple regression, a model comprising of the three factors was statistically significant (F[1, 78] = 87.75, p < 0.001, adj. R2 = 0.52), with children's frequency of feeding difficulties the strongest predictor of caregiver-reported impact with a moderate effect size (r = 0.49). CONCLUSION: Autistic children's feeding difficulties had a greater impact on caregivers than autism or sensory profiles, with the frequency of feeding difficulties and the caregiver impact of these feeding difficulties positively correlated. The findings demonstrate that efforts to understand and address feeding difficulties in autistic children must extend beyond the children to include their families.

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 utility of LENA as an indicator of developmental outcomes for young children with autism.

BACKGROUND: There is growing understanding of the potential benefits of a multi-method approach to accurately capture language skills of children on the autism spectrum. Tools such as Language ENvironment Analysis (LENA) provide an efficient means of capturing and analysing early child vocalizations (CVs) and the language learning environment. While developed to capture whole-day recordings of child language in naturalistic settings, there is potential utility in capturing, but little knowledge about, primary LENA metrics-including CVs and conversational turns (CTs)-and novel metrics, such as vocalization ratios (VRs), sampled in clinical practice settings where children are often seen. Moreover, recent research indicates that the novel VR may offer a broad indicator of children's developmental level, beyond just their language abilities, a hypothesis yet to be investigated in a large sample of children for whom the LENA was designed (i.e., pre-schoolers). AIMS: To explore the extent to which primary and novel LENA metrics collected during brief one-to-one clinical interaction was a useful indicator of developmental outcomes for children on the autism spectrum. METHODS & PROCEDURES: Participants were recruited as part of an on-going research programme evaluating early intervention outcomes (n = 99; age 14-47 months). Language samples were collected at intake (T1) using the wearable LENA Digital Language Processors during a one-to-one, play-based assessment with a clinician. Direct (Mullen Scales of Early Learning-MSEL) and parent-report (Vineland Adaptive Behavior Scales-VABS) measures of verbal and non-verbal skills were also collected at intake (T1) and again at exit (T2), approximately 12 months later. OUTCOMES & RESULTS: Few correlations were observed between child measures and CVs, a primary LENA metric. The novel VR metric was associated with concurrent direct assessment (MSEL) (and to a lesser extent parent report; VABS) measures of verbal and non-verbal skills, with moderate positive correlations found between VRs and all directly assessed subscale scores. However, VRs did not uniquely contribute to the prediction of child outcomes when baseline skills were also considered. CONCLUSIONS & IMPLICATIONS: The novel VR may provide an insight into autistic children's overall development in addition to their language ability, suggesting that even when collected in a short recording format, LENA might be a useful component of a multi-method assessment approach. WHAT THIS PAPER ADDS: What is already known on the subject To accurately capture language skills of children on the autism spectrum, multi-method approaches, including natural language sampling, are recommended. Tools such as LENA provide an efficient means of capturing and analysing naturalistic child language and the language learning environment. What this paper adds to existing knowledge This study demonstrates the potential benefits, and limitations, of using LENA to augment assessment of young children on the autism spectrum. Specifically, LENA provides a complementary, and low burden, method for capturing child language samples. What are the potential or actual clinical implications of this work? Novel metrics, such as the VR, collected during brief clinical interactions might be a useful component of a multi-method assessment approach for children on the autism spectrum.

The relationship between language difficulties, psychosocial difficulties and speech-language pathology service access in the community.

BACKGROUND: A range of factors may impact whether children access speech-language pathology (SLP) services, beyond their communication difficulties. For instance, co-occurring psychosocial difficulties may amplify children's observable difficulties, leading to greater access. It is important to examine such associations because they may reflect inherent differences between children with language difficulties who access services and those who do not, indicating under-servicing for subgroups in the community. AIMS: The first aim was to examine possible differences in psychosocial difficulties between children with language difficulties who did versus did not access SLP services in the past 12 months. The second aim was to examine the unique contribution of psychosocial difficulties to service access, over and above language difficulties and other common predictors of service access. METHODS & PROCEDURES: Analyses were carried out on data gathered from 808 eleven-year-old children who took part in the Early Language in Victoria Study (ELVS). Children were categorized as having language difficulties based on their CELF-4 Core Language Score with a cut-point of > 1.25 SD below the mean. The primary outcome measure was access to SLP services in the past 12 months. Comparison and predictor variables included children's psychosocial difficulties, language skills, relevant demographic variables (gender, caregiver education) and prior SLP access. OUTCOMES & RESULTS: A total of 42 children with language difficulties who had accessed SLP services had significantly greater psychosocial difficulties than those who had not (SDQ Total Difficulties, U = 53.00, z = -4.080, p < 0.001). Using binary logistic regression, a model examining child gender, caregiver education, psychosocial difficulties (internalizing and externalizing behaviours), language difficulties and prior SLP access (in earlier years) was significant χ2 (8) = 137.285, p< 0.001, with increased externalizing difficulties (OR = 1.213, p < 0.001), increased communication difficulties (OR = 0.949, p < 0.001), and prior SLP access (OR = 7.430, p < 0.001) identified as unique predictors of service access. CONCLUSIONS & IMPLICATIONS: The results indicate that children with language difficulties who have comorbid psychosocial difficulties are more likely to access services than those who do not. Accordingly, children with language difficulties who access clinical services may require interdisciplinary support, while children without co-morbid psychosocial difficulties may be under-referred for SLP services. What this paper adds What is already known on this subject There is evidence that a range of personal and contextual factors impact the likelihood of a person accessing healthcare services beyond the specific issue of concern. What this paper adds to existing knowledge In this population-based study, we provide statistical evidence that children with language difficulties who had higher levels of psychosocial difficulties were more likely to access SLP services than those who had lower levels. What are the potential or actual clinical implications of this work? Children with language difficulties who access SLP services may require support for psychosocial difficulties, while children who do not have comorbid difficulties may be underserviced in the community.

Telehealth and autism: Are telehealth language assessments reliable and feasible for children with autism?

BACKGROUND: Access to timely and appropriate speech-language pathology (SLP) services is a significant challenge for many families. Telehealth has been used successfully to treat a range of communication disorders in children and adults. Research examining the use of telehealth for children with autism has focused largely on diagnosis, parent-implemented interventions, and behavioural interventions involving interactions between clinicians and parents. There is, however, very limited research into the use of telehealth directly to assess or intervene with children with autism. This paper reports the outcomes of a study of telehealth language assessments with primary school-aged children with autism. AIMS: To evaluate the reliability and feasibility of telehealth language assessments for school-aged children with autism. METHODS & PROCEDURES: The language skills of 13 children with autism aged 9-12 who attended mainstream schools or support classes were assessed using the Clinical Evaluation of Language Fundamentals-4th Edition. An SLP delivered and scored four subtests of the assessment via telehealth from a remote location. A second SLP at the same location as the child co-scored the online subtests to provide a measure of reliability and delivered the remaining subtests. The local SLP completed checklists in both conditions to provide observations regarding behaviour. Parent feedback was elicited via survey. OUTCOMES & RESULTS: There was strong interrater reliability between the telehealth and face-to-face conditions (correlation coefficients ranged from r = 0.919 to 0.990 across the subtests and Core Language Score) and good agreement between clinicians on all measures. Analysis using the Wilcoxon Signed Rank test indicated no significant differences in children's behaviour between the telehealth and face-to-face conditions, although variation between individuals was observed. Parents provided generally positive feedback about the use of telehealth for the assessments. CONCLUSIONS & IMPLICATIONS: The findings of this study provide preliminary support the use of telehealth assessments of school-aged children with autism. Comparison of telehealth and face-to-face assessment scores showed high agreement and correlation, and while the children showed individual differences in their behaviour during the telehealth sessions, there was no clear difference between the conditions at the group level. The findings suggest that telehealth may present a reliable and feasible approach to the assessment of language for children with autism in some circumstances as a primary or adjunct service model, while acknowledging that individual differences among these children may be important to consider when planning both assessment and intervention via telehealth.

A systematic review of predictors, moderators, and mediators of augmentative and alternative communication (AAC) outcomes for children with autism spectrum disorder.

Documented variability in augmentative and alternative communication (AAC) intervention outcomes makes it difficult for clinicians to select systems most likely to be effective for individual children with autism spectrum disorder (ASD). The aim of this study was to identify child-related factors associated with AAC intervention outcomes through a systematic review of the research literature. A search was conducted of peer-reviewed research articles in which AAC intervention outcomes and associated factors were reported for children with ASD. The search yielded 965 titles and abstracts, of which seven articles relating to six studies met criteria for inclusion. In total, 18 factors were examined, of which nine were assessed as predictors (e.g., cognition, ASD severity, language use), three as moderators (e.g., joint attention, object exploration), and six as mediators (e.g., frequency of therapy, communication partner knowledge). Child characteristics associated with communication outcomes were pre-intervention cognition, severity of ASD, verbal imitation, vocabulary comprehension, object use, joint attention, language use, and two multi-dimensional measures of communication competence. This study suggests emerging evidence for predictors, but less is known about what factors moderate and mediate response to AAC interventions.

A randomised controlled trial of an iPad-based application to complement early behavioural intervention in Autism Spectrum Disorder.

BACKGROUND: Technology-based interventions for Autism Spectrum Disorder (ASD) have proliferated, but few have been evaluated within the context of a randomised controlled trial (RCT). This RCT evaluated the efficacy of one technology-based early intervention programme (Therapy Outcomes By You; TOBY) in young children with ASD. METHODS: TOBY is an app-based learning curriculum designed for children and parents as a complement to early behavioural intervention. Eighty children (16 female) were recruited to this RCT within 12 months of receiving a diagnosis of ASD (M age = 3.38; SD = 0.69) and randomised to receive either treatment-as-usual (community-based intervention, n = 39) or the TOBY therapy (at least 20 min/day) plus treatment-as-usual (n = 41) for a period of 6 months. Outcomes were assessed at 3 and 6 months postbaseline. (Australian New Zealand Clinical Trials Registry: ACTRN12614000738628; www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=365463). RESULTS: Children in the TOBY intervention group averaged 19 min/day engaging with the app in the first 3 months, but only 2 min/day during the second 3 months. There was no group difference in scores on the primary outcome, the Autism Treatment Evaluation Checklist, at either the 3- or 6-month follow-up. However, significant improvements at the 6-month follow-up were observed in the TOBY intervention group relative to the treatment-as-usual group on three secondary outcomes: the Fine Motor and Visual Reception subscales of the Mullen Scale of Early Learning and the Total Words Understood scale of the MacArthur-Bates Communicative Development Index. Statistical trends towards improvement in the TOBY intervention group were observed on measures of adaptive function, although these decreased in magnitude from the 3- to 6-month follow-up. CONCLUSIONS: This study provides evidence that technology-based interventions may provide a relatively low-cost addition to existing therapist-delivered interventions for children with ASD. However, sustained use of the app over the full 6-month period was a challenge for most families.

Should We Use Sentence- or Text-Level Tasks to Measure Oral Language Proficiency in Year-One Students following Whole-Class Intervention?

AIMS: To compare students' oral language proficiency on sentence- versus text-level tasks at school entry and following tier 1 intervention in their first year of formal schooling. METHODS: 104 students participated in this study. Participants were part of a broader longitudinal study and were enrolled at 3 low socioeconomic, linguistically diverse Australian primary schools. Tasks were administered to all students at the beginning and end of the school year. Performance on the sentence-level task, the Renfrew Action Picture Test (RAPT), was analysed for information and grammar as per the test manual. Performance on the text-level task, the Profile of Oral Narrative Ability, was analysed for measures of story length, mean length of utterance, grammatical accuracy, number of different words, and story quality. RESULTS: Results showed that both tasks are sensitive to measure progress following tier 1 intervention. However, RAPT concern status was not related to oral narrative concern status. Furthermore, if only the RAPT task had been used, between 11 and 21% of students performing below expectations in oral narrative would not have been identified. CONCLUSION: It is recommended that the assessment of oral language proficiency of students from culturally diverse, low socioeconomic backgrounds goes beyond the sentence level and includes an oral narrative retell task.

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.

Randomised controlled trial of an iPad based early intervention for autism: TOBY playpad study protocol.

BACKGROUND: Evidence for early intensive behavioural interventions (EIBI) by therapists as an effective treatment for children with an Autism Spectrum Disorder (ASD) is growing. High-intensity and sustained delivery of quality EIBI is expensive. The TOBY (Therapy Outcomes by You) Playpad is an App-based platform delivering EIBI to facilitate learning for young children with ASD, while enabling parents to become co-therapists. Intervention targets include increasing joint attention, imitation and communication of children with ASD. The primary aim of the study presented in this protocol is to determine the effectiveness of the TOBY App in reducing ASD symptoms when used as a complement to conventional EIBI. The secondary aim is to examine parental attributes as a result of TOBY App use. METHODS AND DESIGN: Children aged less than 4;3 years diagnosed with ASD and parents will be recruited into this single-blind, randomised controlled trial using a pragmatic approach. Eligible participants will be randomised to the treatment group 'TOBY therapy + therapy as usual' or, the control group 'therapy as usual' for six months. The treatment will be provided by the TOBY App and parent where a combination of learning environments such as on-iPad child only (solo), partner (with parent) and off-iPad - Natural Environment (with parent) Tasks will be implemented. Parents in the treatment group will participate in a TOBY training workshop. Treatment fidelity will be monitored via an App-based reporting system and parent diaries. The primary outcome measure is the Autism Treatment Evaluation Checklist. The secondary outcome measures involve diagnostics, functional and developmental assessments, including parent questionnaires at baseline (T0), three months (T1) and six months (T2). DISCUSSION: This trial will determine the effectiveness of the TOBY App as a therapeutic complement to other early interventions children with ASD receive. The trial will also determine the feasibility of a parent delivered early intervention using the iPad as an educational platform, and assess the impact of the TOBY App on parents' self-efficacy and empowerment in an effort to reduce children's ASD symptoms. The outcomes of this trial may have EIBI services implications for newly diagnosed children with ASD and parents. TRIAL REGISTRATION: ACTRN12614000738628 retrospectively registered on 1st of July, 2014. UTN: U1111-1158-6423.

Atypical monitoring and responsiveness to goal-directed gaze in autism spectrum disorder.

We hypothesized that difficulty in understanding the goals of others' actions in autism spectrum disorder (ASD) might be linked to a diminished attention and responsivity to relevant social cues. Using an eye-tracking paradigm, we investigated how 24 children with ASD and 24 matched children without ASD responded to the observation of uncompleted actions without a clear target (neutral condition) versus a condition in which the actor's gaze direction indicated the target of the actions (head-turning condition). Children without ASD significantly increased their attention to the actor's face and to the action's target in the head-turning condition compared to the neutral condition, while this was not the case in the ASD group. Overall, our findings suggest a diminished monitoring and responsivity to social cues signalling goal-directedness, which might impact on the ability to understand other's action goals in young children with ASD.

Supervision for Aspiring Behaviour Analysts in Australia: An Exploration of Current Practices, Challenges, and Opportunities.

Effective supervision is a key component of the development of effective and ethical behavior analytic repertoires. However, the provision of supervision may be challenging in countries where behavior analysis is an emerging profession and there are few qualified practitioners. We conducted a mixed-methods survey study to examine the supervision practices of board certified behavior analysts (BCBAs) in Australia, and perceived challenges related to the provision of supervision. Respondents reported using a variety of supervisory practices to meet the demand for supervision, but a lack of time, resources, and geographical location posed challenges. Based on these findings, we provide several recommendations for addressing identified challenges. Although each recommendation has been contextualized to meet the needs of the Australian behavior analytic community, these recommendations may be useful in other parts of the world where behavior analysis is an emerging profession or there are few BCBAs to meet the needs of a growing behavior analytic workforce.

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.

Spoken Language Change in Children on the Autism Spectrum Receiving Community-Based Interventions.

We assessed the spoken language of 73 preschool aged children on the autism spectrum receiving community-based early intervention at two time points, approximately 7 months apart. Using the Spoken Language Benchmarks, there was a small non-significant change in the proportion of children transitioning from below, to at or above, Phase 3 (word combinations). Using binomial regression, a model comprising seven of nine clinician-proposed child-related predictors explained 64% of the variance. None of the predictors were individually significant, although a large effect size (OR = 16.71) was observed for children's baseline rate of communicative acts. The findings point to substantial unmet clinical need in children with minimal verbal language, but also the relevance of clinician-proposed predictors of their spoken language outcomes.

Brief Report: Preliminary Finding for Using Weight-of-Evidence Graphical Information Sheets with Teachers to Correct Misinformation About Autism Practices.

The use of both empirically supported and unsupported practices by teachers is common with autistic students. In this study, strategies were used to reduce use of unsupported practices. First, specially-designed information sheets were shared with teachers about the evidence-base of two practices used in schools: one unsupported (sensory integration therapy [SIT]) and one supported (antecedent-based interventions [ABI]). A professional development program was then implemented to improve knowledge and use of ABI. The information sheets significantly reduced teacher support for SIT, however this was not maintained following professional development. Support for ABI remained unchanged across phases. The need for ongoing teacher professional development in replacing use of unsupported practices with more evidence-based approaches is discussed.

Longitudinal Social and Communication Outcomes in Children with Autism Raised in Bi/Multilingual Environments.

Globally, there are more bilingual speakers than monolingual speakers; however, scant research evidence exists regarding social communication development and outcomes for bilingual children with autism spectrum disorder (ASD). A stronger evidence base will facilitate health professionals and educators providing accurate recommendations regarding language use. This study employed a longitudinal cohort design to compare social and communication skills, at baseline and over 12 months, for 60 monolingual and 60 bilingual children with ASD receiving community based early intervention. We found few differences at intake, and no difference in the magnitude of change over 12 months for this cohort. Findings support the notion that there is no basis on which to discourage home language use with bilingual children with ASD.

Meeting the communication needs of students on the autism spectrum in Australian classrooms: Adjustments reported by educators and specialists.

PURPOSE: The purpose of this study was to examine educators' and specialists' provision of communication adjustments for students on the autism spectrum in mainstream and supported education settings. METHOD: Secondary analysis of data collected from educators and specialists in the Australian Autism Educational Needs Analysis was undertaken. Thematic analysis of adjustment descriptions identified 11 categories. The use of the 11 specific adjustment categories with reference to (a) participant group (educator versus specialists), and (b) setting (mainstream versus supported) were described and associations investigated using Chi-square analyses. RESULT: Only 32% of the 381 educators and specialists reported using adjustments. Of the adjustments reported, those categorised as "Multimodal Communication", "Structured Teaching", and "Assistive Technology" were frequently included by both groups. Significant associations were apparent between groups and the use of specific adjustments including naturalistic communication strategies. Significant differences were evident in the proportion of specific adjustments used by participants in supported as opposed to mainstream settings. CONCLUSION: Possible reasons for the differences in the adjustments reported by educators and specialists and the role that setting may play in these are discussed. These include resourcing, the choice of adjustment being driven by school setting rather than student need, and possible differences between professionals in describing the adjustments made.

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.

Clinician Proposed Predictors of Spoken Language Outcomes for Minimally Verbal Children with Autism Spectrum Disorder.

Our aim was to explore insights from clinical practice that may inform efforts to understand and account for factors that predict spoken language outcomes for children with Autism Spectrum Disorder who use minimal verbal language. We used a qualitative design involving three focus groups with 14 speech pathologists to explore their views and experiences. Using the Framework Method of analysis, we identified 9 themes accounting for 183 different participant references to potential factors. Participants highlighted the relevance of clusters of fine-grained social, communication, and learning behaviours, including novel insights into prelinguistic vocal behaviours. The participants suggested the potential value of dynamic assessment in predicting spoken language outcomes. The findings can inform efforts to developing clinically relevant methods for predicting children's communication outcomes.

The experiences of adults with complex communication needs who volunteer.

PURPOSE: The aim of this study was to explore the experiences of adults with complex communication needs (CCN) who engage in volunteering. METHOD: In-depth interviews were conducted with 24 adults with CCN who had worked as volunteers. Interview transcripts were analysed according to grounded theory methodology. RESULTS: 'Control' emerged as the most important factor determining the nature of the participants' volunteering experiences. Two key strategies for enhancing control were the provision of augmentative and alternative communication (AAC) systems and appropriate support to volunteer. A theoretical model to account for the experiences of volunteers with CCN is presented. CONCLUSIONS: Adults with CCN who want to volunteer must have access to an effective communication system and appropriate support if they are to volunteer successfully for the benefit of themselves and others.