Changing the story: How diagnosticians can support a neurodiversity perspective from the start

Abstract

Caregivers usually reach out to professionals because they are concerned about their child's behaviour or development. Their much beloved child does not seem to act the way other children do. Parents of autistic children, prior to that child's diagnosis, will have likely noted their child's delays in reaching typical developmental milestones, more frequent or intense behavioural dysregulation, and have general concerns around their child appearing 'different' (Crane et al., 2018). They may worry that their parenting choices are to blame for child's difficulties.Parents often feel intense distress akin to grief after their child receives an autism diagnosis (Abbott et al., 2013;Mulligan et al., 2012). Sinclair's (2012) iconic essay, Don't Mourn for Us, recognizes that many parents feel such grief because of their 'shattered expectations'. This grief is further fueled by the 'stories of autism' crafted for families by both professionals and popular media. The diagnostic entity of autism is a subjective construct used by society to interpret and categorize behaviour, affect and ways of thinking -a sort of story or narrative (Duffy & Dorner, 2011). The way we share this diagnostic story with families will guide their thinking about 'how to accommodate and respect autistic children -and how to love them . . . Or they help autistic[s] . . . understand themselves, [and learn] how to get on in a world of neurotypicals' (Hacking, 2009, p. 502). Dominant autism narratives, including those shared by the diagnostician at the initial diagnosis, will be heard and internalized by families, autistic children and society as a whole.Until recently, the diagnosis of autism has been framed from a deficit-based perspective as seen in diagnostic manuals such as the Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM-5; American Psychiatric Association, 2013) and the International Classification of Diseases, 11th Revision (ICD-11; World Health Organization, 2008), as well as theories that describe autism as fundamentally characterized by central deficits in social motivation (e.g. Chevallier et al., 2012), or other skills. Not only genetic (e.g. Bailey et al., 1995), but also environmental (e.g. Christensen et al., 2013) literature on the aetiology of autism frames challenges as deficits rooted in the autistic person. The result is that the medical model has created stories of autism in

A systematic review on autistic people's experiences of stigma and coping strategies

“…The discourses that autistic people are exposed to, especially during diagnosis and post‐diagnosis, will affect whether and how they integrate autism into their own identity (Bagatell, 2007; Leedham et al, 2020; Mogensen & Mason, 2015; Punshon et al, 2009). Instead of focusing solely on impairment, professionals should learn to support autistic individuals in exploring positive aspects of their diagnosis and building on their strengths in addition to addressing their challenges (Brown et al, 2021).…”

Neurodiversity and Autism Intervention: Reconciling Perspectives Through a Naturalistic Developmental Behavioral Intervention Framework

“…Clinicians providing autism diagnoses often use pathologizing language and focus on negative aspects of autism (Crane et al, 2018 ; Dwyer et al, under review; Jegatheesan et al, 2010 ), and the discourse in autism intervention articles regrettably confirms that negative, subjective pathology language is widely employed in this field. However, guidance on alternative, more positive terminology is available (Bottema-Beutel, et al, 2020 ; Brown et al, 2021 ; Bury et al, 2020a ; Kenny et al, 2016 ; Robison, 2019 ) and is currently gaining popularity among clinicians, researchers, and autism professionals. To align with this, we recommend that clinicians become immersed in the foundational essay of the Autistic advocacy movement that provided a plea to parents of Autistic people to accept their children as they are (Sinclair, 1993 ), while recognizing that this is not incongruent with working to improve core developmental and social competencies or maximize “person-environment fit” (Lai et al, 2020 ).…”

Five Ways Providers Can Improve Mental Healthcare for Autistic Adults: A Review of Mental Healthcare Use, Barriers to Care, and Evidence-Based Recommendations

“…The language that is used to talk about autism or to refer to autistic people is very important. How autism is discussed, especially by healthcare providers, has implications for how society views autistic people and how autistic people shape their own identity [ 58 ]. Some language choices perpetuate the idea that autism is something to be “fixed” or that autistic people are inherently inferior to non-autistic people [ 54 ••].…”