Diagnosis lost: Differences between children who had and who currently have an autism spectrum disorder diagnosis

Abstract

Autism spectrum disorder (ASD) diagnoses sometimes change due to misdiagnosis, maturation, or treatment. This study uses a probability-based national survey—the Survey of Pathways to Diagnosis and Services—to compare currently diagnosed (n=1420) and previously diagnosed (n=187) children aged 6–17 years based on retrospective parental reports of early concerns about their children’s development, responses to those concerns by doctors and other health care providers, the type of provider who made the first ASD diagnosis, and the ASD subtype diagnoses received (if any). Propensity score matching was used to control for differences between the groups on children’s current level of functioning and other current characteristics that may have been related to diagnosis loss. Approximately 13% of the children ever diagnosed with ASD were estimated to have lost the diagnosis, and parents of 74% of them believe it was changed due to new information. Previously diagnosed children were less likely to have parents with early concerns about verbal skills, nonverbal communication, learning, and unusual gestures or movements. They were also less likely to have been referred to and diagnosed by a specialist. Previously diagnosed children were less likely to have ever received a diagnosis of Asperger’s disorder or autistic disorder.

ASD Validity

“…Fein et al (2013) reported that good or optimal outcomes for ASD ranged widely, from about 1 % to nearly 50 %. Blumberg et al (2015) reported that 13 % of 1607 individuals diagnosed with ASD in childhood no longer met criteria for ASD: 9 % had been initially misdiagnosed and 4 % Blostt heir ASD due to treatment or maturation. Helles et al (2015) found that 24 % of individuals diagnosed initially with Asperger's disorder no longer met criteria for any developmental disorder.…”

Long‐term outcomes for children with neurodevelopmental disorders: Are they core business for paediatricians?

“…Each child is likely to have individual clusters of comorbid challenges. Furthermore, assessment at one point in time is unable to address the uncertainty that arises due to changes over time, which may move children into, or out of, diagnostic categorisation . In response to this uncertainty, diagnostic methodologies vary considerably .…”

“…Furthermore, assessment at one point in time is unable to address the uncertainty that arises due to changes over time, which may move children into, or out of, diagnostic categorisation. [9][10][11] In response to this uncertainty, diagnostic methodologies vary considerably. 12 They may be influenced further by non-clinical factors, such as the opportunities for intervention funding.…”

Child with multiple problems: Clinical complexity and uncertainty

“…A final source of within‐diagnosis heterogeneity is the imprecision that arises at diagnostic boundaries, when arbitrary cut‐off points are used to define dichotomous diagnoses within spectrum conditions. As a result, children whose clinical presentation falls near these boundaries may move into, or out of, diagnostic categories over time …”

“…As a result, children whose clinical presentation falls near these boundaries may move into, or out of, diagnostic categories over time. 6 In addition to the variation due to diagnostic type and withindiagnosis heterogeneity, further complexity arises from individual patterns of comorbid problems. Comorbid problems are common in NBP practice.…”