Service Delivery

Grandma knows best: Family structure and age of diagnosis of autism spectrum disorder.

Sicherman et al. (2018) · Autism : the international journal of research and practice 2018
★ The Verdict

Invite grandma and older siblings to screening talks; their watchful eyes speed autism diagnosis by months.

✓ Read this if BCBAs who run intake or parent training in clinics and schools.
✗ Skip if Clinicians serving only adults or clients without living grandparents.

01Research in Context

01

What this study did

The team asked 139 parents when their child got an autism diagnosis.

They also asked how many siblings the child had and how often the child saw grandparents.

Parents answered with a short phone or paper survey.

02

What they found

Kids who saw grandma at least weekly were diagnosed five months earlier.

Kids with older brothers or sisters were diagnosed ten months earlier.

Close family eyes seem to spot early signs faster.

03

How this fits with other research

Siklos et al. (2006) found autism parents feel lost without special info and breaks.

Nachum’s work shows grandma can give both info and breaks, closing that gap.

Sivberg (2002) showed these parents feel more strain.

Earlier grandma help may lower that strain by getting help started sooner.

Choi et al. (2012) found kids with autism do not split parents up.

So extra family contact helps without hurting the couple.

04

Why it matters

You can ask about grandma and siblings at intake.

If they are close, teach them red flags and free screening numbers.

That single step could cut almost a year off wait time and lower parent stress.

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Add one question to your intake form: “How often does your child spend time with grandparents or older siblings?”

02At a glance

Intervention
not applicable
Design
survey
Sample size
477
Population
autism spectrum disorder
Finding
positive
Magnitude
small

03Original abstract

This pilot study estimates the effects of family structure on age of diagnosis, with the goal of identifying factors that may accelerate or delay diagnosis. We conducted an online survey with 477 parents of children with autism. In addition, we carried out novel, follow-up surveys of 196 "friends and family," who were referred by parents. Family structure and frequency of interactions with family members have significant effects on age of diagnosis (p < 0.05). In all, 25% of parents report that other individuals indicated that their child might have a serious condition before they themselves suspected it. Moreover, around 50% of friends and family report that they suspected that the child had a serious condition before they were aware that either parent was concerned, suggesting that the clues were there to see, especially for experienced viewers. While half of those individuals shared their concerns with the parents, the other half either did not raise any concern (23%) or just "hinted" at their concern (27%). Among children with siblings, children with an older sibling are diagnosed approximately 10 months earlier (p < 0.01) than those without, and children with no siblings were diagnosed 6-8 months earlier than children with siblings (p < 0.01). Interestingly, frequent interactions with grandparents, especially grandmothers, significantly lowered the age of diagnosis by as much as 5 months (p < 0.05). While this pilot study requires replication, the results identify potential causes for accelerated or delayed diagnosis, which if better understood, could ultimately improve age of diagnosis and treatment, and hence outcomes.

Autism : the international journal of research and practice, 2018 · doi:10.1177/1362361316679632