Handicapped or handicapable?

NEVER, in my wildest dreams of career life, would I have thought that I would have to apologize for a child NOT filling the criteria for a diagnosis of Autism Spectrum Disorder (ASD) ie. NOT having Autism. However, this is exactly what I find myself doing almost every Monday in clinic, apologizing. Had to apologize again yesterday and today.

You would think that a child NOT having an ASD is a very good thing. Well, not in British Columbia. You see in BC every child below the age of five diagnosed with an ASD gets $20,000 dollars (Canadian health care dollars) a year for developmental interventions. After the age of five if a child is diagnosed with an ASD or already has a diagnosis of ASD parents get $6000 dollars a year for developmental interventions as the rest of the developmental support will now be transferred and funded through their school. Please note however, that NO OTHER DEVELOPMENTAL DISORDER RECEIVES THIS KIND OF FUNDING. So, of course parents WANT this diagnosis!

Let me be clear, parents want this diagnosis not because they want the money for selfish purposes but because this child may not have Autism but he or she very likely has another just as functionally impairing developmental disorder. There is a reason, after all, this child ended up at my door. A reason he or she came to see a Developmental Pediatrician. Most of them are not doing well in the community or in the school. And chances are that although the child did not fit the DSM-IV clinical criteria for an Autism diagnosis he or she filled it for another condition. So he or she COULD definitely use the resources this funding provides.

Even more appalling is that the aforemetioneed ASD funding ends at the age of 18 when, of course, MAGICALLY, the child, now adult, NO LONGER has autism (can you hear the sarcasm?). This measure is ridiculously akin to the proposal of asking a child with Cerebral Palsy to give up his wheelchair just because he or she is now age 18. NOBODY would dream of doing that!!

So forget the diagnosis, it is all about FUNCTION! Those of you who heard me speak know I am all about FUNCTION!!! What can this child/adult do? What can't this child/adult do? How can we help support this REGARDLESS or even WITHOUT a diagnosis? HOW do we make this happen?

The best definition of an intellectual disability (what we used to call mental retardation) was proposed by Luckasson et al., in 1992. ‘‘Mental retardation [Intellectual disability] is not something you have, like blue eyes or a bad heart, nor is it something you are, like short or thin. It is not a medical disorder or a mental disorder. Mental retardation [Intellectual disability] reflects the ‘fit’ between the capabilities of individuals and the structure and expectations of their environment’’ . This definition applies to ALL developmental disorders. Fit, change, modify, support the environment and people FUNCTION!!!

We, in BC, have made some progress in changing people's mindset. Some of our school districts are doing this, addressing kids functionally, unfortunately still under the constraints of certain measures (school designations). Slowly, very slowly, the importance of function is setting in. But even last week I heard a family saying: "She is not getting school resources BECAUSE she does not yet have a diagnosis". Again FORGET the diagnosis. FUNCTION, FUNCTION, FUNCTION - THAT is the key!  Give a child or adult what he or she needs to optimize his or her developmental outcome at whatever level that may be.

Enough support and maybe we can change this paradigm. Maybe we can ..... to quote the "evil" Sue Sylvester in Glee, make sure that people are not handicapped but "HANDICAPABLE!!"