Our Path to the Autism Diagnosis

I don't think I've shared how we arrived at the Autism Spectrum Disorder (ASD) diagnosis for our oldest son. It was a longer than necessary path and I hope that sharing it helps other parents reach an accurate diagnosis more quickly.

In 2012 (grade 3) we paid out of pocket for a psychological evaluation. In their report they noted that we as parents "endorsed a notable number of items that are typically associated with Pervasive Developmental Disorders (PDD), and Asperger's Disorder in particular." The Autism Spectrum Rating Scale (ASRS) was administered and our responses fell in the "slightly elevated" range, "suggesting that [child] displays a number of behavioural characteristics similar to individuals diagnosed with an Autism Spectrum Disorder."

They concluded that "...although [child] does seem to lack some social skills and displays some unusual PDD-type behaviours, based on parental report at this time, he does not exhibit the typical clinical presentation or extent of social/communication problems and/or pattern of unusual behaviours often seen with children with PDD. [...] he does not engage in repetitive/stereotyped behaviours such as hand flapping, spinning, or twirling, or playing with toys or objects in an unusual manner."

Later in the report: "Observations made during the assessment, combined with scores received on behavioural rating scales, were also somewhat suggestive of a Pervasive Developmental Disorder. Significant difficulties were described by both [child]'s parents and Sunday School teacher in the areas of social interaction and behavioural rigidity. However, given his extreme difficulty with attention and impulse control, it is difficult at this time to determine if [child]'s difficulties with social interaction are related purely to ADHD, or to an underlying Pervasive Developmental Disorder as well."

So basically because his behaviour wasn't flamboyantly stereotypical they dropped the ball and didn't provide the diagnosis, instead suggesting that we "monitor his behaviour and discuss this issue again in the future with his pediatrician or primary physician." So what did we pay thousands of dollars for this report for? Thanks for nothing Chapman and Hildyard.

In 2015 (grade 6) we saw a Consultant Pediatrician & Neonatologist who also missed ASD signs and noted he "has ADHD of the combined type but he also has very serious obsession with videogames" and "he has a specific learning disability."

Finally in 2016 (grade 7) my son had a psycho-educational consultant who looked more closely and recommended further testing for ASD. Unfortunately she ended up off work with a concussion, delaying our receipt of her report recommending this. She conducted extensive assessment using direct observation, standardized behaviour questionnaires, the Autism Diagnostic Interview (ADI-R) with me, and the Autism Diagnostic Observation Schedule, Second Edition (ADOS-2) with my son. In November 2017 she was able to provide a diagnosis of Autism Spectrum Disorder, Without Intellectual or Language Impairment. She noted this was clear for the last several years and that there was evidence from Fall 2013.

Knowing the diagnosis was coming, on November 4, 2017 I began a leave of absence (LOA) that would turn out to last for two years. Read more about that here.