Autism: Changing the narrative to recognize growth
A group of psychiatrists wants to focus on proficiency and growth rather than deficits when assessing progress in autistic children.
The research team measured five key domains: communication, socialization, activities of daily living, and emotional health (internalizing and externalizing).
By mid-childhood, approximately 80% of children with a diagnosis of autism spectrum disorder (ASD) experienced growth or proficiency in at least one of the five domains, and 20% were “doing well” in four or more of the domains.
Higher household income and better family functioning were associated with doing well.
ASD is a developmental condition that affects social interaction, behavior, and communication. Ability levels and the need for support vary enormously among individuals with the condition.
Traditionally, researchers and clinicians have focused on the deficits in intellectual or skills development that people with ASD may experience.
This approach assumes that the “optimum” outcome is when a person no longer meets the diagnostic criteria for ASD.
However, psychiatrists at the Centre for Addiction and Mental Health and The Hospital for Sick Children (SickKids), both in Toronto, Canada, have led a study team that is now calling for a more holistic approach to measuring outcomes in children with ASD.
In the journal JAMA Network Open, the study authors describe their research looking at a new way to assess progress. They write:
“For this developmental stage, we prefer the phrase ‘doing well,’ a less value-laden concept than having a good outcome. Specifying an outcome implies a final endpoint, whereas doing well relates to someone’s circumstances at a particular point in their life’s journey.”
The approach may open up new ways to provide tailored interventions that support children with ASD in their development.
“Changing the narrative away from a deficit-based system to one that recognizes growth and success can serve as a foundation for building up each unique child as they tackle new skills and developmental stages in life,” explains Dr. Katherine Cost, who is a co-author of the paper and a research associate in SickKids’s psychiatry department.
To help the researchers develop their new system, an advisory group of parents identified outcomes that were important to them. These included peer relationships, communication, emotional health, and independent living skills.
The psychiatrists then identified standard assessment tools that measure these factors and established thresholds to determine which children were doing well relative to a neurotypical population.
The assessment tools cover five distinct domains of proficiency and growth in children with ASD:
externalizing responses, such as antisocial behavior, hostility, and aggression
The psychiatrists used their system to assess 272 children with ASD, 86% of whom were males. They carried out two assessments: the first when the mean age of the children was close to 3.5 years (“preschool”) and the second when the children were about 11 years of age (“mid-childhood”).
By mid-childhood, approximately 80% of all the children met the team’s definition of doing well in at least one of the five domains.
About 20% of children were doing well in four or more domains.
The researchers discovered that doing well in a particular domain was associated with preschool scores in the same domain.
In addition, doing well was associated with early language skills, household income, and family functioning.
“Contextual factors, like household and family functioning, remind us that an autism diagnosis exists alongside the social context in which ASD children are growing up,” says Dr. Cost.
Dr. Cost adds that while researchers have studied the effects of social and environmental factors on child development in general, there has been little research into the effects on children with ASD.
First author Dr. Peter Szatmari, who is Psychiatrist in Chief at SickKids, sums up the research:
“[T]hese findings open up a new avenue of research to assess what types of specific interventions, such as providing more income resources or alternative treatment planning for families at an earlier stage of development, may help increase the likelihood that more children with ASD will do well over time.”
The authors acknowledge several limitations of their research.
For example, they have yet to test the “predictive validity,” or stability, of their definition of doing well. In other words, they have not yet tested whether repeated measures give the same scores for a particular child at a given point in their development.
In addition, they relied on information that a single individual — usually a parent — had supplied about each child. An independent assessor may be necessary to provide additional, more objective information.
Finally, the researchers also note that it will be important to determine how the development of neurotypical children compares with that of children with ASD in the five domains that they assessed.