This ACLC Seminar will be in hybrid form. To join online, please follow this link: https://uva-live.zoom.us/j/62034973997

Abstract:

‘The Wheel Has Been Invented Many Times’ – Parental Experiences of Communication and Support for Minimally Verbal Autistic Children

Around 30% of autistic children are nonverbal or minimally verbal (NMV), whose expressive language includes a restricted lexicon and little to no syntactic structure (Tager-Flusberg & Kasari, 2013). Within the large field of autism research, NMV children are often overlooked, or assumed to have no language capacity at all (Hinzen et al. 2020). This is in spite of the fact that some nonverbal autistic adults have written books about their experiences (e.g. Puleo, 2022, who is a ‘speller’), that standard language assessment is not specifically tailored to NMV children (Kasari et al, 2013), and that stimuli traditionally used in standardized assessment may underestimate NMV children’s true latent knowledge of language (Muller et al., 2022).

Participatory Action Research (PAR, see Lennette, 2022) is a framework that acknowledges ableist tendencies in traditional research, and the marginalization of communities such as NMV children and adults. It maps out strategies for engaging communities directly in research (as per the famous autistic motto ‘Nothing About Us Without Us’), and for producing research aimed at action and societal change. Although some PAR has engaged with NMV children in the creation of alternative methods of communication and self-expression (Wilson et al., 2019, 2020), and one study has investigated parental attitudes towards genomic autism research (Asbury et al., 2024), to our knowledge no previous study has investigated parental experiences of how NMV children communicate (verbally or non-), how they experience therapeutic intervention and support for communication, and what linguists and clinicians can and should do to better support NMV children.

We recruited 10 parents of NMV autistic children (through support organizations or clinical foundations) and conducted semi-structured interviews (with one or two parents at a time) aimed at these questions. Parents reported a diversity of profiles, from children whose expressive language was specifically hindered by motor and articulatory deficits, to children who were learning new languages online or developing spelling abilities (putatively) semi-spontaneously. Across the group, children showed different preferences for alternative and augmentative means of communication (AAC). Parents pointed out the issues with a system of support that is monolithic and unable to acknowledge or explore the complex individual profiles of strengths and weaknesses of their children. They signaled difficulties in accessing support, lack of interdisciplinarity in autism intervention and the compartmentalization of resources for autistic children and for children with language disorders. When parents were empowered and engaged in support for their children they reported positive experiences. These findings raise specific actionable issues both societally and in the realm of interdisciplinary autism research which will can be tackled in the future.