Service Delivery

Unmet health care needs and health care quality in youth with autism spectrum disorder with and without intellectual disability.

Menezes et al. (2021) · Autism : the international journal of research and practice 2021
★ The Verdict

Autistic kids with ID face almost double the unmet mental-health needs—screen early and route them to care faster.

✓ Read this if BCBAs who write treatment plans or refer families in clinic, school, or waiver programs.
✗ Skip if Practitioners who only serve high-functioning ASD clients without co-occurring ID.

01Research in Context

01

What this study did

Menezes et al. (2021) asked 1,165 U.S. caregivers about health care for their autistic kids. Half the kids also had intellectual disability (ID).

The team used a big national survey. They counted unmet needs and asked parents to rate care quality.

02

What they found

Kids with ASD plus ID were nearly twice as likely to have unmet mental-health needs. Parents also gave their care lower marks.

The gap stayed even after the authors adjusted for income, race, and insurance.

03

How this fits with other research

Emerson et al. (2023) looked at the same ASD-plus-ID group and found they get more daily medicines. Together the two studies show more needs and more pills, but not better care.

Shawler et al. (2021) found low-income families lost services during COVID-19. Michelle’s work says ID creates a second, separate barrier that hits even when money is not the problem.

Laugeson et al. (2014) tracked preschoolers and saw social skills fall further behind in the ASD-plus-ID group. The new data suggest those widening skill gaps turn into harder-to-meet health-care needs later.

04

Why it matters

If you screen for ID at intake you can flag the kids whose mental-health needs will likely slip through the cracks. Build faster referral paths to psychiatry or counseling for this subgroup and check in sooner after the first visit.

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→ Action — try this Monday

Add an ID checkbox to your intake form; if ticked, schedule a mental-health referral within two weeks.

02At a glance

Intervention
not applicable
Design
other
Population
autism spectrum disorder, intellectual disability
Finding
negative

03Original abstract

The increase in the prevalence of autism spectrum disorder has placed greater demands on the health care system. Children and adolescents with autism spectrum disorder often experience challenges accessing high-quality physical and mental health care due to characteristic social-communication deficits and behavioral difficulties, as well as high rates of complex medical and psychiatric comorbidities. Intellectual disability commonly co-occurs with autism spectrum disorder and individuals affected by this co-occurrence may have additional impairments that compound challenges accessing health care. This study investigated the relations among co-occurring intellectual disability, unmet physical and mental health care needs, and health care quality in a large, nationally distributed sample of youth with autism spectrum disorder using structural equation modeling techniques. Co-occurring intellectual disability was significantly associated with unmet mental health care needs in children with autism. In addition, unmet mental health care needs mediated the relationship between co-occurring intellectual disability and health care quality; youth with autism spectrum disorder and co-occurring intellectual disability who had a past-year unmet mental health need had significantly poorer caregiver-reported health care quality. These findings suggest that youth with autism spectrum disorder and co-occurring intellectual disability may be more likely to experience unmet mental health care needs and receive poorer quality of care than the broader autism spectrum disorder population.

Autism : the international journal of research and practice, 2021 · doi:10.1177/13623613211014721