Getting to Diagnosis in Autism and Autism Spectrum Disorder's; What Does Our Road Look Like?

I recently read an excellent blog post (http://bestpracticeautism.blogspot.com/ ) titled “How many doctors does it take to diagnose and autism spectrum disorder.”  The bottom line was the average age of first diagnosis of autism in the UK was 5.5 years of age and for higher functioning ASD’s such as Asperger’s it was 11 years of age.

Perhaps a more frustrating realization was less than10% of parents received a confirmed diagnosis at their first clinic visit.  For another 40% it took two clinic visits and in total only 63% of parents reported having a confirmed diagnosis on or after their third clinic visit.  According to the article, “in many instances, parents waited more than 5 years before a diagnosis was confirmed.”  Given the knowledge that the earlier the intervention, the better the outcome and that most research points to age 4 or before as the ideal starting point, the protracted diagnosis time would seem detrimental to both parents and children.

Not surprisingly 40% of parents said they were not happy with the diagnostic process.  It hardly seems surprising that the more professionals parents saw on this quest for a diagnosis, the more negatively they viewed the process.  Often these parents were given the advice of “wait and see if they grow out of it” rather than encouragement to seek treatment help asap.

In my opinion, the problem lies not so much with the lack of standardized assessment criteria as it does with general knowledge of where to go initially to get a diagnosis.  I know my own experience, having children with mild to moderate hearing impairments, was that there was no obvious place to go.  Our local hospital at the time had no children’s center and our regular family doc’s didn’t have the right equipment.  If it wasn’t for the lucky location of a large University within 10 miles of our home, we could have spent countless hours and days going from one expert to another.  As it was they were able to make the diagnosis on the first visit and then to identify for us, a list of professionals capable of treating our kids.

It seems likely that the point of first contact for parents who suspect a developmental problem is the pediatrician.  It also seems to me that the creation of local and stand alone, multidisciplinary developmental diagnosis and treatment programs are a good option.  I look forward to the publication of research in the US that looks at experiences of parents of children with ASD’s here, so we can accurately understand the process they go through to receive a diagnosis in order to unlock access to the necessary treatment.

Ref’s

Howlin, P. & Moore, A. (1997) Diagnosis in autism: A survey of over 1200 patients in

the UK. Autism: International Journal of Research and Practice, 1, 135-162.

Howlin, P and Asgharian, A. (1999) The diagnosis of autism and Asperger syndrome: findings from a survey of 770 families.  Developmental Medicine and Child Neurology. Dec;41(12):834-9.