Autism diagnosis can be a long and unfair process

Thank you for a very good article covering many of the problems faced by parents who are trying to get diagnostic assessments for their children, whether it be for autism or anything else [“Families wait in limbo for autism assessments”, May 8-15]. However, there is one glaring reality left out, which must be included.

That is, for all the pain and problems these parents go through, this story covers those who are somehow able to find the funds for private assessments.

Many families do not have those funds, so just add that frustration onto all their other pain and worries and wonder: what happens to their children?

> Lenore S. Clemens / Vancouver

Your story “Families wait in limbo for autism assessments” highlights a key issue regarding how services for children and youth with developmental and/or mental-health challenges are allocated. An increasing number of professionals who work with this population have come to the conclusion that making decisions on allocation and provision of services on the basis of the child’s diagnosis, whether this be a specific medical-type diagnosis, such as Down syndrome, or a more descriptive developmental diagnosis, such as autism, misses the point, can be unfair, and risks pitting one diagnosis group against another.

A diagnosis is very important to understanding the basis and overall nature of a child’s developmental and/or mental-health challenges, to making the situation more comprehensible to the family, and to enabling convenient communication among parents, professionals, and other stakeholders. However, within a single diagnosis group, huge differences exist in the functional status of each affected child and between the situations faced by each family. These differences relate, among other things, to the severity of a child’s diagnosed condition, the presence of other associated challenges (frequently encountered in this population), and the child’s own unique personality and life experience. Hence, allocating therapeutic and supportive services on the basis of diagnosis alone, while relatively simple and convenient, is not rational. It also discriminates against children who do not have a clear diagnostic label that is tied to service funding, but who may have multiple impairments in the areas of language skills, self-help skills, and the ability to self-regulate behavior.

Many of us are increasingly convinced that a more rational and fair method is to evaluate each child’s functional status and to assess the child’s functional needs and the family’s ability to address these needs. This will involve development of appropriate measures of child and family functional status and need and a rethinking of how health, social, and educational policies can meet the needs of this population properly. The good news is that work is proceeding in B.C. and other parts of Canada on both of these fronts, but there is much work to do.

> Dr. Anton Miller / Vancouver