Title: Evaluation of Point OutWords, a Motor Skills Intervention to Promote Language Development in Non-Verbal Children with Autism: A Feasibility Study
Funder: Department of Health and Social Care

Abstract: BACKGROUND: Autism affects about 1% of the world's population. Of these, about a quarter are nonverbal or minimally verbal. These severely communication-impaired individuals and their families, carry the heaviest burden of treatment yet receive comparatively little attention, often excluded from research, treatment and education for want of ability to respond to verbal instructions. In autism in general, age-normed expressive language outstrips age-normed receptive language. Specifically within minimally verbal autism, though, our and others' convergent work has identified a subpopulation who manifest the reverse pattern, receptive outpacing expressive language. In these individuals- fully a third of our clinical sample of nonverbal and minimally verbal cases- gross, fine and particularly oral motor skills correlate with this disparity between intact receptive and impaired expressive language. The straightforward inference is that, at least in this subgroup, difficulty speaking might be secondary to difficulty in planning, sequencing and executing movements of the mouth and the vocal tract. Most current interventions for autism target circumscribed deficits or symptoms; for instance, computer-assisted treatments focus on recognition/labelling of facial emotions. Most successful are methods that train social imitation, and/or that take advantage of the autistic person's own interests and behaviours as occasions to evoke communication- e.g. the proven PACT treatment. No system, though, has aimed or been proven to develop communication by training prerequisite skills of motor control. We hypothesise that such motor training could evoke gains in communicative skills, within our motor-impaired subgroup and potentially in general. Such motor training thus could support a phenotypically targeted approach to autism treatment, and could complement methods that address social communication more directly as part of a poly-therapy strategy. In a process of user-centred design, woring with nonverbal and minimally verbal autistic children and their communication therapists, we have developed Point OutWords, iPad-based, parent/caregiver-delivered therapy that trains manual motor skills for communication by pointing. In a school-based pilot study, Point OutWords has shown efficacy in developing visuomotor and language skills. AIMS: We propose a feasibility study of evaluating Point OutWords' effectiveness. We aim to evaluate families' fidelity in implementing Point OutWords treatment, in terms of the extent (content, duration, number of sessions) of intervention delivered and parents' understanding of the intervention instructions and goals; to evaluate acceptability to children, parents and clinicians; to evaluate recruitment and dropout rates, and to evaluate candidate outcome measures for their acceptability to families and their sensitivity as test-retest measures of treatment-induced change. Variance in these measures will be used in a statistical power analysis to compute sample size for a randomised controlled trial. RESEARCH PLAN: 46 nonverbal or minimally verbal autistic participants and their parents will be recruited by clinicians known to them, and randomised equally to eight weeks of half-hour daily Point OutWords intervention or a control intervention consisting of iPad-based training of emotion recognition. Qualitative aspects of fidelity and acceptability will be evaluated using thematic analysis of diaries, focus groups and interviews. A battery of child-observation and parent-rated tests of motor, language and social function will be applied at pre-test, immediate post-test and three-month follow-up, and analysed for change as a function of treatment group. Participants randomised to the control condition will be offered Point OutWords at the end of the study period. OUTCOMES: Should feasibility be established, a follow-up application will be submitted for a full-scale randomised controlled trial, using identified outcome measures, sample size, and forecast recruitment and completion rates, and with treatment procedures fine-tuned in light of this project's quantitative and qualitative findings on fidelity and acceptibility. As a caregiver-delivered treatment, Point OutWords has potential not only to enhance communicative outcome but also to reduce cost of care.

Lay abstract: Many people talk about autism, many know someone living with autism, but the science and the public discussion of autism are dominated by that fraction of autistic people who can speak to communicate. Those whose autism is more severe are all too often overlooked: they are excluded from scientific research as unable to comply with experimenters' instructions, and they get shortchanged when it comes to community placements and education. They are the most in need of clinical therapeutic and educational interventions, yet they get left out of the picture. In a user-centred design process partnered with autistic clients and their therapists, we have developed Point OutWords (http://PointOutWords.online/), an iPad app-based communication training system targeted at this neglected population. Whereas many teaching and learning strategies adapted from methods for non-autistic people end up working against autistic cognition by asking people with autism to do what they cannot easily do, Point OutWords works with autistic individuals and their caregivers: Beginning from the cognitive strength of perceiving localised details, caregivers model and develop skills in manipulating puzzles, then build up to pointing at letters on a keyboard. Having shown improvements in visuomotor and language skills in a pilot project with autistic schoolchildren, we now will test Point OutWords in an NHS setting: working with patients, families and clinicians throughout, this feasibility project will evaluate our ability to recruit and to retain families in sufficient numbers, families' ability to accept and to use Point OutWords as recommended, and the practicality for families and utility in controlled-trial outcome measurement of several tests that could be used to measure improvements produced by Point OutWords. Findings will be shared with the autism community through organisations and publications, and will be used to design a subsequent, larger trial in cooperation with autism families.

Research activity codes: 6.7 PHYSICAL
Health categories: MENTAL HEALTH