Pathways to a diagnosis of autism spectrum disorder in Germany: A survey of parents

Early identification of autism spectrum disorders (ASD) is a prerequisite for access to early interventions. Although parents often note developmental atypicalities during the first 2 years of life, many children with ASD are not diagnosed until school age. For parents, the long period between frst parental concerns and diagnosis is often frustrating and accompanied by uncertainty and worry.

Höfer et al Child Adolesc Psychiatry Ment Health (2019) 13:16 https://doi.org/10.1186/s13034-019-0276-1 RESEARCH ARTICLE Child and Adolescent Psychiatry and Mental Health Open Access Pathways to a diagnosis of autism spectrum disorder in Germany: a survey of parents Juliana Höfer1*, Falk Hoffmann1, Inge Kamp‑Becker2, Luise Poustka3, Veit Roessner4, Sanna Stroth2, Nicole Wolff4 and Christian J. Bachmann5 Abstract  Background:  Early identification of autism spectrum disorders (ASD) is a prerequisite for access to early interven‑ tions Although parents often note developmental atypicalities during the first 2 years of life, many children with ASD are not diagnosed until school age For parents, the long period between first parental concerns and diagnosis is often frustrating and accompanied by uncertainty and worry Methods:  This study retrospectively explored the trajectories of children with a confirmed ASD diagnosis during the diagnostic process, from first parental concerns about their child’s development until the definite diagnosis A survey concerning the diagnostic process was distributed to parents or legal guardians of children with ASD from three specialized ASD outpatient clinics in Germany Results:  The response rate was 36.9%, and the final sample consisted of carers of 207 affected children (83.6% male, mean age 12.9 years) The children had been diagnosed with childhood autism (55.6%), Asperger syndrome (24.2%), or atypical autism (20.3%) On average, parents had first concerns when their child was 23.4 months old, and an ASD diagnosis was established at a mean age of 78.5 months Children with atypical autism or Asperger syndrome were diagnosed significantly later (83.9 and 98.1 months, respectively) than children with childhood autism (68.1 months) Children with an IQ