This morning, my son offered an explanation for the winter phenomenon of frost forming on the ground. His account was quite insightful.
There was a period when his developmental profile might have positioned him on the more capable end of the autism spectrum.
The terminology surrounding autism has undergone significant evolution since his diagnosis at three years of age, and it is highly probable that this linguistic evolution will persist.
A recent investigation now underscores the imperative for all individuals to discontinue the utilization of the phrase ‘high functioning autism’.
Researchers affiliated with the Telethon Kids Institute at the University of Western Australia conducted an extensive review of evaluations pertaining to over 2,200 children who had received an autism diagnosis and exhibited a diverse range of intellectual capacities.
While all subjects demonstrated some degree of impairment in what are termed adaptive functions—manifesting as difficulties with communication, compromised self-care abilities, or even motor skill deficits—the cohort could be broadly categorized into two groups: those with intellectual disabilities and those without.
The analysis undertaken by the research ensemble indicated that intellectual capacity generally served as a poor indicator of adaptive functioning.
The age at which a diagnosis was established proved to be a considerably more accurate predictor of social and life-skills proficiency than an individual’s IQ score.
Consequently, numerous individuals possessing robust cognitive abilities may nonetheless encounter substantial challenges stemming from their autism, rendering any descriptive label regarding their capacity to navigate life’s complexities at best misleading and at worst detrimental.
“The designation ‘high functioning autism’ is not a formal diagnostic term; rather, it is predicated on an assessment of intellectual quotient rather than a functional evaluation,” states Gail Alvares, a medical scientist and the lead investigator.
“Initially, it was employed to characterize individuals who did not exhibit an intellectual disability, yet it has somehow permeated common parlance and has come to imply that individuals are capable of managing perfectly well and do not encounter any day-to-day difficulties.”
Such a characterization could result in those with a diagnosis, as well as their families and educators, potentially failing to receive the requisite support, all due to the assumption that intellectual acuity equates to the ability to cope in most other spheres.
This is an easily fallen-into pitfall. I acknowledge my own culpability, having employed the term as a concise method for conveying the less severe aspects of my child’s diagnosis.
However, I am also cognizant of how this phrasing can obscure the obstacles he confronts.
And there are indeed challenges.
Despite my son’s profound imagination and keen awareness, social interactions can be a source of discomfort for him.
He is readily overwhelmed, transforming excursions to the cinema into a gamble.
He experiences difficulties with self-reflection and temporal management, and can exhibit an intense focus on his interests (I am now a proficient Fortnite strategist, despite never having participated in a single game).
He will acquire a multitude of skills throughout his life to assist him in navigating a boisterous, bustling existence replete with intricate social cues and unpredictable schedules.
We will impart what knowledge we can, naturally, but his distinctive speech patterns, his predilection for literature, and his exceptional recall of scientific and historical data mean that it can be straightforward for us to overlook the hurdles he will face in developing other competencies.
As Alvares aptly articulates, “many children and adolescents with autism may possess an age-appropriate IQ yet still struggle with essential life skills such as independently commuting to school, utilizing public transportation, or engaging in communication at a level commensurate with their peers.”
Much like the majority of neurological conditions, the autism spectrum presents a multifaceted constellation of characteristics that render life distinct from what the general populace might anticipate.
For some individuals, certain traits may confer distinct advantages.
For others, it constitutes a disconcerting amalgamation of attributes that complicate existence unnecessarily.
While labels can occasionally serve as a convenient abbreviated means to bypass lengthy explanations, they also possess the potential to lead us to forgo inquiries into what makes each individual unique.
“If we are not conducting appropriate evaluations at the time of diagnosis to ascertain an individual’s strengths and deficits, thereby enabling us to provide suitable interventions, these individuals are at risk of progressively falling behind their peers,” observes Alvares.
Lexicon in the fields of health and medicine is in a constant state of flux, and it is easy to feel perpetually at a disadvantage.
Not so long ago, my son might have been diagnosed with Asperger’s syndrome, a designation that has fallen into disuse for various reasons.
However, if the term ‘high functioning autism’ ever held any definable meaning, it no longer does.
It is time for me to abandon its use, and I urge you to do the same.
It certainly will not provide much insight into my son’s capabilities, even if he can hold his own in discussions concerning Minecraft, planetary formation, or thermodynamics.
Indeed, my pride remains unwavering.
