As a neurotypical mother, my introduction to autism and its language at the time of my son’s diagnosis was from the vantage point of the medical model, which usually makes use of person-first language, ie, “person with autism” (Kenny et al. ., 2016).
Whereas many parents of young persons on the spectrum find the diagnosis process reassuring as it validates their concerns about their child’s behavior and offers a roadmap for how to support them, others find the process of integrating the concept of the autism spectrum into their narrative about their child’s identity to be confronted.
Carers may go through a process of redefining their expectations, even grieving their former expectations around parenting a mainstream child.
By the time they receive the autism diagnosis, many carers are no strangers to experiencing judgment (Rowan, 2013) and increased levels of stress (Bonis, 2016) due to coping with their child’s special needs and frequently occurring comorbid conditions such as sleep difficulties, anxiety, attention challenges, or disruptive disorders (Mutluer et al., 2022), as well as financial implications (Tathgur and Kang, 2021).
I can appreciate that for some carers, choosing a language preference can place a boundary around the identity narrative they weaved about their loved one before the diagnosis and reflect a process of gently assimilating a new reality into their perception of their loved one.
In addition, the heterogeneous nature of autism adds to the uncertainty about the impact of early interventions on a particular child’s symptomatology looking to the future, making it more difficult to experience acceptance.
At the time of my child’s diagnosis, I felt most comfortable with using person-first language, due to a number of factors. The first one was the uncertainty about how my child’s diagnosis would impact his sense of self and being in the world. The second was my limited awareness of the experiences of autistic persons, from their point of view. The third was my own preference for person-first language, as part of my counseling vocation.
At the time, I also remember finding it confusing to integrate the many vantage points on what autism meant, ranging from slogans like “different brilliant” to “neurological disorder.”
Following the diagnosis, I experienced a gradual expansion of awareness in appreciating the way my son is related to the world.
When the dust settled (gradually, over the years) and revealed a clearer picture of what being on the spectrum looked like for my son, the process of acceptance became the appreciation of the cherished aspects of his personality (including ones intertwined with him being on the spectrum), his experience of people and the world, the celebration of his continual exponential growth, and the acknowledgment of challenges that were still present for him.
I appreciated that (for me) my son’s identity is the interplay between biological makeup, intrapersonal growth, and the web of the relational processes around him, all intimately connected and inseparable from one another (this viewpoint is influenced by Dan Siegal’s work and definition of themind).
As my experience of acceptance deepened, my language preference gradually shifted to a preference for disability-first terminology.
I appreciate that family members, friends, and professionals have various meanings attached to autism and that individuals on the spectrum have the right to choose what autism means for their identity.
Diagnosis-first language, although virtually non-existent within my counseling field, has been suggested to be associated with greater acceptance of autistic individuals as neurodiverse, and going beyond the disorder model’s perspective on autism (Brown, 2012).
Kenney et al. (2016) found that despite variability, parents of children on the spectrum generally prefer diagnosis-first terminology, as a way of placing the emphasis on the value-neutral neurodiversity or positive aspects of autism.
Since the 1940s, the definition and meaning of autism went through a dynamic process of change influenced by research, shifts in social paradigms, and wider awareness and appreciation of the experience of autistic individuals and their families.
Research now suggests that identifying as autistic has a positive impact on the self-esteem of autistic individuals and lowers their risk of developing depression (Cage et al., 2017).
I hope that as we continue this dialogue, with sensitivity to individual preferences and meaning, and respect for where they are at on their support journeys, society’s definition of autism will likewise continue to evolve in appreciation and acceptance.