Towards a neurodiversity-affirmative conceptualisation of psycho-education in the context of autism

Introduction

Psycho-education is a practice often used in autism care, bridging between diagnosis and clinical counselling. In the autism literature, there is a shift towards defining autism in terms of deficit to defining autism in terms of neurodiversity. Literature increasingly indicates that this neurodiversity conceptualisation may lead to a more positive identity and less internalised stigma. Therefore we investigated to what extent this shift to neurodiversity-affirmative psycho-education has already occurred in the context of clinical care in Flanders, Belgium.

Methods

We reviewed the three psycho-educational tools that are most recommended and practically used in our region (I am special 2, Brain Blocks, Give me 5), deploying a reflexive thematic analysis.

Results

Three overarching themes emerged from the analysis: (1) differing but mainly deficit-based autism conceptualisations (2) needs are important but little specified; (3) knowledge transfer as the main goal.

Discussion

The shift to neurodiversity-affirmative psycho-education has not yet occurred in clinical care in Flanders. We recommend centring lived experiences in psycho-educational tools, including more recent theories such as monotropism and the double empathy problem, and conducting more participatory research concerning different stakeholders’ needs.

Lay abstract

Psycho-education is a practice that is often used in clinical care in the context of autism to bridge diagnostics and clinical counselling. There are different definitions of what psycho-education should entail, but possible themes can be ‘what autism is’ and how the current needs of the individual and the environment can be addressed. At the same time, there is a shift in literature from defining autism in terms of deficits to defining autism in terms of difference (neurodiversity), where difficulties arise from a mismatch between the individual and their context. In this paper, we investigated three psycho-educational tools (I am special 2, Brain Blocks, Give me 5). More specifically, we investigated to what extent these psycho-educational tools are in line with neurodiversity-affirmative views. We found that the psycho-educational tools did not always specify how they understood autism. Autism was frequently described in terms of deficits. Also, the tools did not always mention which and whose needs they wanted to cater for (an autistic person, relatives,…). Lastly, the tools had a strong focus on addressing ‘what autism is’ – thereby mainly focussing on knowledge, and less on needs or emotional support. This differs from the approach recommended by recent literature in relevant fields. This paper gives a starting point to evaluate current psycho-education practices and recommends developing new psycho-educational tools that place first-hand autistic needs and experiences at the centre and push back against harmful stereotypes about autism.