Proposed changes to the DSM-V, which would take place in late 2012/early 2013 would eliminate up to 75% of high functioning ASD patients (PDD-NOS, Asperger’s and Childhood Disintegrative Disorder) from the Autism Spectrum. The remainder would be lumped into a general “autism” diagnosis. This means that more than 3/4 of high-functioning autistics would no longer be considered autistic, placing their access to social and school services in jeopardy.
Fred R. Volkmar, MD, director of the Child Study Center at the Yale School of Medicine, the researcher behind the proposed changes, told the New York Times that his research and recommendations mean that fewer than half of the higher-functioning kids now diagnosed with autism would meet the new diagnosis. Some 75% of kids with Asperger’s would be excluded, he says, as would some 85% of those with PDD-NOS.
Taking a step back from the controversy surrounding these changes, it seems obvious that changing the name of their diagnosis from ASD to another name does not make them any less autistic, and that other motivators must be at play.
Basic formative differences exist in all autistic children’s brains – including enlarged white matter growth in the first year of life leading to a large cranial size in infancy; reduced brain stem size and function, and confused neural connections, which lead to sensory and social difficulties. These formative differences exist in patients with PDD-NOS and Asperger’s as well.
Changing a name will merely shift the tide, rather than stopping the epidemic, and it shifts focus from the real problem – and that is the root cause of autism, which must be addressed.
The proposed changes only stand to create a mirage – a false hope that autism numbers will reduce, when in reality, these patients will be improperly handled, therapies will be withheld and autistic children will be prevented from having proper interventions.
In an interview with CTV News, Leah Miltchin, the head of the board of directors at Autism Ontario said, “That is the concern that a lot of parents currently have. If you have a child with a diagnosis of Asperger’s syndrome and they qualify for certain supports, when the diagnostic criteria change, they may not fit under the ASD umbrella anymore.And yet a person with Asperger’s syndrome would still need support services.”
“Even if the diagnostic criteria change, the needs that are there will still be there,” she says.
In a day and age when funding for early childhood intervention programs such as Parents as Teachers and First Steps is cut to the bone by government intervention, this change to the DSM-V is another huge insult to parents of children with autism – parents who daily fight a system seemingly designed to be impossible to master.
The proposed changes stand to either allow for more specific diagnostics or to mask the growing epidemic and all signs point to denial of disability. I want to encourage parents to make their voices heard that they want to move forward, and not back.
I want to ask all those who read this to consider signing a petition against those changes. This is step 1 for parents who want to speak out. Large numbers and a wide response will allow us to have a step 2.
Parents of autistic children are among the best advocates of any kind, in part because of their having to fight for every therapy and service they get. I have faith that our voice will be heard in large numbers.