Service Delivery

Assessing the diagnostic experiences of a small sample of parents of children with autism spectrum disorders.

Siklos et al. (2007) · Research in developmental disabilities 2007
★ The Verdict

Canadian families wait nearly 3 years and see 4+ professionals before an autism diagnosis — expect delays and plan parent support accordingly.

✓ Read this if BCBAs working with newly diagnosed children in any setting
✗ Skip if BCBAs serving only adults diagnosed decades ago

01Research in Context

01

What this study did

Siklos et al. (2007) asked 21 Canadian parents about their autism diagnosis journey.

Parents told how long they waited and how many doctors they saw.

The team used a simple survey to collect these stories.

02

What they found

Parents waited almost 3 years from first worry to final diagnosis.

They saw 4 or 5 different professionals along the way.

Every family described the same long, frustrating path.

03

How this fits with other research

Bejarano-Martín et al. (2020) later asked 14 EU countries and found the same delays still happen.

Wilson et al. (2023) showed these early delays lead to bigger service gaps when kids become teens.

Cage et al. (2024) and Gregory et al. (2020) revealed adults still face the same broken system decades later.

Together these studies show the 3-year wait Susan found in 2007 has not improved — it has simply moved upstream to affect teens and adults too.

04

Why it matters

When you meet a new autism family, expect they have already waited years. Build extra empathy into your intake. Ask about their diagnostic journey first. This simple question shows you understand their struggle before you start services.

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Add one question to your intake: 'How long did your diagnostic process take?' Then give extra time for the answer.

02At a glance

Intervention
not applicable
Design
survey
Sample size
56
Population
autism spectrum disorder
Finding
not reported

03Original abstract

Although no Canadian studies have been conducted, studies suggest parents of children with autism experience difficulties obtaining a diagnosis for their child. Fifty-six parents of children with autism completed three questionnaires providing information on the families' demographics, parents' experiences throughout the diagnostic process, and their child's autistic symptomatology. These parents experienced significant difficulties obtaining a diagnosis for their child. Parents saw an average of 4.5 professionals, and waited almost 3 years to receive a diagnosis following their first visit to a professional regarding their child's development. The impact of autistic symptomatology on the diagnostic process is discussed.

Research in developmental disabilities, 2007 · doi:10.1016/j.ridd.2005.09.003