Potential impact when DSM-5 removes intellectual disability from autism

Credit Facing Autism in NB

There are some who are concerned that the DSM-5, available in May of 2013, will not include Intellectual Disability (ID) in one or more of the Autism Spectrum Disorder (ASD) diagnostic classifications.

For example, check out  Harold Doherty’s blog on Facing Autism in NB where he so eloquently explains researcher bias and where the DSM-5 revision team is going with respect to what autism is or is not in relation to an ID.

While I can empathize with Doherty’s views, and I am certainly on his side in this debate, I am not as worried as he is. Perhaps that is because I have always found that, both as a parent and in private practice, the majority of government and community programs are geared to individuals either with a brain injury or a primary ID, not autism per se. (My family’s story is here.)

In my neck of the woods of Ontario, for example, there is Contact Niagara. It is a single agency that co-ordinates programs and services (including residential services) for adults with an intellectual disability. In other words, they match services to individuals based on the assessed needs of those individuals. However, the key point is that no intellectual disability, no eligibility, autism or not.

In addition, Ontario has four provincial networks for people with an ID and accompanying behavioural or communication problems, like Twin Lakes Clinical Services. Those networks provide a wide range of clinical services, as well as short-term respite residential services. 

As well, there is Bethesda, which operates a group of homes that provide for both short and long-term care for the more severely disabled who can no longer live in the family home, usually because of disruptive or dangerous behavioural problems. I personally know how wonderful Bethesda is as I once worked for them as a consultant.

Unfortunately, however, I don’t know what equivalent programs and services are provided throughout Canada. Perhaps readers can let me know via my Contact Form and I’ll publish a list on my sidebar.

So, to prepare for the aftermath of DSM-5 diagnostic changes, parents and providers need to start thinking in terms of intellectual disability as a primary diagnosis, which was the way it was in the 70s and 80s.

And, just perhaps that is why I am not so fearful. My son is in his mid forties. He and we have lived through decades of diagnostic revisions but, as I mentioned at the start of this post, the one constant has been that government funding and agency help has always been there for anyone with an intellectual disability — including when the disability involves seizures and obsessive self-injurious behaviours. Whereas the criteria for what constitutes an autism spectrum disorder has changed constantly.

In fact, when I read what Doherty wrote earlier today, I was immediately reminded that in the late 1960s, autism was represented by DIBS, as explained in The Search for Self, a book I had to study in my first psychology course and is still available for purchase. 

Dibs was a withdrawn, intellectually gifted, non-communicative child who hid in the corner. Sound familiar? When my son was six years old, I was told by a psychologist that he couldn’t be autistic because his intellectual aptitude was not high enough and his behaviours (e.g., hand flapping and biting his hand when over stimulated) were nothing like that of DIBS. 

So, might that the impact of the DSM removing intellectual disability, and accompanying behavioural symptoms, from the autism spectrum disorder — be a return to the (now politically correct and political) notion that those diagnosed with the disorder are gifted in some way? Seems very predictable doesn’t it?