Social communication skills and meaningful inclusion best predictors of thriving in youth with autism

December 11, 2015

From major depression to violent outbursts to ongoing struggles with anxiety, sadness and anger, 60 percent of parents of teens on the autism spectrum flag concerns about their child’s emotional health and behaviour.1

Research suggests that about 25% of youth with ASD are actively struggling with mental health issue that impacts their daily life.2

“Why am I talking about this, if I’m talking about thriving,” asked Dr. Jonathan Weiss, a York University psychologist and Canada Chair in Autism Care and Treatment after initially focusing on statistics like these in his talk entitled Thriving in Youth with ASD – What Does it Take?, hosted by ACT Autism Community Training in October 2015.

  “Why are the rates so high of the things I just depressed you with,” continued Weiss. “Youth with ASD are living in a world with a tremendous amount of ASD-related stressor, day-to-day, not just in a few isolated events that one can experience. I spent the first ten minutes focusing on that, because if we focus on measuring those very important problems, we start thinking about what kinds of programs we can offer that can do something about that. These issues have a significant impact on daily life, and important implications for care.”

Many members of the audience of more than 100 people in attendance at the ACT Autism Community Training-sponsored event are actively engaged in programming, whether in services, treatment, or parenting youth on the autism spectrum. Through videos and vignettes, Weiss illustrated how engagement in programming that fits the individual helps promote thriving in youth with a range disabilities – mainly due to a lack data specific to youth with autism.

Qualities such as competence, confidence, character, connectedness, caring and ability to make a contribution can be said to be essential to a feeling of wellbeing, and certainly not the descriptors Weiss and his colleagues expected parents of participants in Special Olympics to use in reference to their children.
 
Yet 50 percent said their children showed competence, 60 percent said their child was confident, and almost 90 percent said their child experienced connectedness. “This is not a representative sample,” cautioned Weiss, as the youths were athletes already involved in recreation. Many parents emphasized that they could attribute what Weiss describes as “the six c’s” to their child because of their engagement with Special Olympics.
 
“What you need,” he added, is alignment with your ecology – a fit with your strengths and your context. When there’s a good fit, you develop more of these six c’s and grow and develop as a person in a way that increases fit.”

Cognitive behavioural therapy has been shown to be effective for helping youth with ASD feel less anxious. But reduction of mental health symptoms, said Weiss, is not the same as good mental health. I don’t have a magic recipe list of everything – not ‘this much of this, this much of that’,” he said. “How do we actually measure personal and spiritual development in someone with ASD – or positive emotional ratings of happiness? It’s critical to have balance.

“For this conversation, what are the important things that matter to you, that go into internal assets and strengths that in turn go into the ecology,” Weiss added. “We found that differences in social communication, and the frequency of home and school participation predicted who was thriving.

“The thing to really take home here is that differences in social communication skill and participation fully explained less thriving. The fact that youth had lower communications skills, it was about the differences in engagement at home and school. In thriving, there was “a heavy component of meaningful inclusion.”
 
The family environment, whether characterized by negative stress or positive warmth is also a major contributing factor in thriving. How to make that happen? “It’s about creating policy and services that also treat the family, said Weiss. “If we tailor things to the unique needs of an individual, we also need to tailor them to the unique family.”

Employment is another realm where fit is vital for thriving for youth with ASD. Other factors contributing to vocational success are parental education, not having an intellectual disability, and graduating high school, while receiving career counseling actually reduced the likelihood of securing and staying with a job.
 
“There is lots more research to do on this,” concluded Weiss, “and we have to tap into a wider array of systemic and holistic treatment targets. We cannot put the responsibility of participation on the individual in order to make this happen.”

Dr. Weiss and colleague Priscilla Burnham Riosa published a paper on the theme of thriving in ASD in March 2015.
Thriving in Youth with Autism Spectrum Disorder and Intellectual Disability appeared in J Autism Dev Disord.

Sources:
1Behavior problems at 5 years of age and maternal mental health in autism and intellectual disability. Journal of Abnormal Child Psychology 39(8):1137-47.
2Comorbid psychiatric disorders in children with autism: interview development and rates of disorders. J Autism Dev Disord. 2006 Oct;36(7):849-61.