Autism Spectrum Disorder in Down Syndrome: Experiences from Caregivers.
Noemi Alice Spinazzi, Alyssa Bianca Velasco, Drew James Wodecki and 1 others
PMID 36624226WHAT IT FOUND
Caregivers of children with Down syndrome and autism noticed differences at an average age of 3.87 years, but diagnosis came at an average age of 8.52 years, a 4.65-year gap.
Many said providers and therapists lacked DS-ASD knowledge.
Key findings
01Caregivers noticed differences at an average age of 3.87 years, but formal ASD diagnosis came at an average age of 8.52 years, an average gap of 4.65 years.
02Most caregivers first raised concerns with education or therapy providers (27, 57%) or primary care providers (22, 47%), and 18 of the 22 caregivers who went to a primary care provider felt that provider lacked DS-ASD knowledge.
03Communication deficits were the most frequently reported challenge (25, 57%), and stereotypic behaviors were the most commonly reported initial concern (24, 53%).
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The analysis included only 47 caregivers, so it describes a small group. Participants were recruited from a closed English-speaking online DS-ASD support group, and most were based in the United States. The survey asked for very limited demographic information. ASD diagnosis was accepted by parent report without independent verification. There was no comparison group of families of children with DS alone or ASD alone. Parents answered open-ended questions about events that may have happened years earlier, which can introduce recall bias. Parents may remember negative experiences with services more readily than positive ones. Because respondents were members of a support group, they may be more likely than the general population to have had difficult experiences. The coding of open-ended responses into themes involved researcher judgement. The children's ages varied widely, with a median age of 17.00 years, so early diagnosis experiences reflect different eras.
The easy way to misread this
Do not read the 4.65-year average delay as proof that all children with Down syndrome and autism are missed for years. It came from 47 caregivers in an English-speaking online support group, and diagnoses were not independently verified.