Priority service needs and receipt across the lifespan for individuals with autism spectrum disorder.
Across the lifespan, only 30 % of autistic individuals have all their priority service needs met—access worsens as age increases.
01Research in Context
What this study did
Chee et al. (2017) asked Canadian families about the services their autistic members needed most. They tracked whether each need was met, from toddlerhood through adulthood.
The team used a survey. They looked at age, income, and region to see what predicted getting help.
What they found
Only 70 % of people had even one top need met. After that, the chance of getting help dropped as birthdays piled up.
System issues drove the gaps more than any child trait. In plain words: older kids and adults were simply left out.
How this fits with other research
McLennan et al. (2008) saw the same slide in preschool. Their earlier pilot found most toddlers got speech therapy, yet few got mental-health or genetic checks. The 2017 data show the gap hardens with age.
Menezes et al. (2021) extend the story. They show autistic youth who also have intellectual disability face double the unmet mental-health needs. Y et al. set the baseline; Michelle et al. flag who is hit hardest.
Rubenstein et al. (2019) and McQuaid et al. (2024) echo the access pain. Eric et al. found 40 % of U.S. preschoolers got zero community services. A et al. saw kids wait for assessment with <2 h weekly help. Together, the papers form a chain: needs start unmet and stay that way.
Why it matters
For BCBAs, the message is clear: start advocacy early and keep it going. Write sharper goals for transition-age clients. Push for mental-health and behavior plans before the child exits the school system. Track insurance or regional funding rules that change at 18 or 21. If you don’t, the data say the system will quietly close the door.
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02At a glance
03Original abstract
Individuals with Autism Spectrum Disorder (ASD) have a range of health, community, and social support needs across the lifespan that create age-specific challenges in navigating service sectors. In this study, we set out to identify the priority needs of individuals with ASD across the lifespan, and the factors that predict receiving priority services. Participants included 3,317 individuals with ASD from a Canada-wide online caregiver survey, stratified into five age groups (preschool, elementary school age, adolescence, emerging adulthood, adulthood). Priority receipt was calculated as a ratio of current services that corresponded to individualized priority need. Age-stratified Poisson regression analyses were used to identify the sociodemographic, clinical and systemic predictors of priority receipt. Results indicate that the distribution of priority need varied by age, except for social skills programming, which was a high across all groups. The number of high and moderate priority needs diversified with age. Overall, 30% of individuals had none of their priority needs met and priority receipt decreased with age. Systemic factors were most consistently related to priority receipt across the lifespan. Understanding patterns and correlates of priority needs and use that currently exist in different age groups can inform policies to improve service access. Autism Res 2017, 10: 1436-1447. © 2017 International Society for Autism Research, Wiley Periodicals, Inc.
Autism research : official journal of the International Society for Autism Research, 2017 · doi:10.1002/aur.1786