Autism inside out: lessons from the memoirs of three minimally verbal youths

Abstract

Background: To date, research exploring experiences and perspectives of people who have severe autism and are minimally verbal, has been sparse.

Objectives: To build new understanding based on insider perspectives of people who have severe autism and are minimally verbal. We took interest in how these perspectives support, challenge, or augment current depictions of autism in academic literature.

Method: Adopting a descriptive qualitative approach, three memoirs written by youths who have severe autism and are minimally verbal were examined using inductive thematic analysis. Analytic methods followed a recursive process of coding, collating, mapping, reviewing, creating clear themes, and then reporting using compelling extracts.

Results: Analysis generated an over-arching theme regarding the youths’ concern that the way they are perceived from the outside does not match the people they are on the inside. In explaining this mismatch, the youths identify differences in the way their brains work, as well as difficulty controlling their bodies.

Conclusions: These youths emphasize concepts of embodiment and physical control as central to their experiences of autism. Findings highlight the need for research exploring insider perspective and the development of innovative methods to gain insight into the understanding and interests of people who are minimally verbal.

Implications for rehabilitation

• The development of a communication system (hi-tech or low tech) should be a top priority for intervention when serving clients who have severe autism and are minimally verbal.

• When working with clients who have severe autism and are minimally verbal, clinicians should be cautious in applying and interpreting assessments of intelligence and understanding, since difficulties with verbal output and movement control can obscure results.

• To improve information gathering and therapeutic outcomes, clinicians and educators should use varied assessment and intervention techniques, administered across multiple sessions, and environments. Consideration should be given to difficulties with movement initiation and movement inhibition when guiding and interpreting behaviors.

Keywords:

• Minimally verbal
• severe autism
• movement control
• insider perspective
• embodiment

Acknowledgements

We thank Carly, Tito, and Naoki for sharing their perspectives and experiences with courage, candor, and thoughtfulness.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

We gratefully acknowledge the Canadian Occupational Therapy Foundation for funding this project through their Invacare scholarship award.