Autism. Asperger’s. PDD-NOS. Does the label really matter?
A panel of experts assembled by the American Psychiatric Association has been working on revamping the definition of autism spectrum disorders. Many in the autism community are worked up into a frenzy over what it will mean – and rightly so.
The New York Times reported yesterday that another group of experts, led by the head of the Child Study Center at the Yale School of Medicine, contends that the new definition would so significantly narrow the diagnosis of “autism spectrum disorders” that the overwhelming majority of children currently diagnosed with Asperger’s Syndrome or PDD-NOS (Pervasive Developmental Delay – Not Otherwise Specified) would no longer fall under the umbrella definition of autism.
Autism Speaks Chief Science Officer Geri Dawson said in a live chat yesterday that he thought the estimates of the new study probably over-exaggerated the impact of the change in definition, yet the organization was keeping a close eye on it while details are finalized over the next year.
As a parent of a child with high functioning autism, these proposed changes greatly concern me. I honestly don’t know where my son would fall under the new definition. At times, it’s been a no-brainer that he has classic autism. At others, doctors have wondered if he was more in that realm of PDD-NOS.
But the only reason his diagnosis could even be considered “gray” is that we’ve been toiling for years to get Carson to where he is today. It’s taken five years of intensive therapy from every type of therapist under the sun, thousands of dollars, and countless hours of behavioral intervention. When most children were enjoying the carefree world of daycare or early preschool, Carson was already working hard with his therapists and early-intervention specialists.
So, diagnosing a kid like Carson becomes more difficult. And I worry that if not Carson, thousands of kids similar to him could be stripped of the autism label.
Shouldn’t I be dancing in the streets if someone tells me that my son no longer is classified as being on the autism spectrum? No. A change in definition won’t change my son. Autism or not, he will still struggle to find the words to tell me how his day was; he’ll still need to work ten times as hard as his peers to learn to hit a ball, ride a bike or swim; and he’ll still find himself the odd man out on the playground, struggling to communicate with his peers.
Why does the change in the definition of autism spectrum disorders even matter? Well, it’s all about “the system.” Having the autism label can help in terms of receiving behavioral support. I also believe it provides a framework for understanding from the general school community.
We’ve spent years learning “the system” where we live, and believe me, it hasn’t been an easy path to get the help we’ve needed for our son. Any change in the system could mean, in my opinion, the opening of a door that leads to fewer services for Carson.
I would fight every step of the way to stop that from happening. But I’ve heard the stories. I KNOW the pain that many families have suffered, denied services that their children so greatly need. We special needs parents know that it’s simply a battle for resources.
Any gray area will almost certainly lead to legal battles. Time, money and energy spent by already emotionally exhausted special needs parents.
So, what do we autism parents do? My plan is to remain aware of the status of discussions, and to continue to focus on Carson’s specific’s needs.
He has a speech problem – we get him speech therapy. He has difficulty writing – he needs occupational therapy. Difficulty reading – he needs the help of a reading specialist. If we stay focused on the needs instead of the label, hopefully we’ll be well-positioned to ride out any bumps in the road on our AUTISM journey.
{ 3 comments… read them below or add one }
My son who is diagnosed with PDD-NOS (barely on the spectrum) was initially denied admission to our public special needs preschool program due to “testing” and was only admitted after fighting with the school system arguing his Autism diagnosis. Without that diagnosis he would most definitely not have gotten the help he needs. He is a different child two years later, better for the help he got and we are thrilled we “made it in by the skin of our teeth!” Where would he be if the had not fallen into the spectrum…a lagging behind, learning disabled, preschooler because I have to work and can’t afford therapies insurance companies would deny without a diagnosos, that’s where. We may be over the hurdle now, but I’m afraid for other families like us and will do whatever I can to help them by advocating for kids like ours. Thank you for keeping us informed and encouraging us through the ongoing battle.
I’m fearful. We fought for most of our sons life. He was finally diagnosed Nov 2010 with high functioning autism. What does this mean for him?? He’s finally beginning ABA therapy, which has been incredibly helpful! Will he lose this???? I’m very concerned!!!
Heidi, From everything that I’ve heard, it is unlikely any time soon that your son will lose anything that he’s currently receiving. If he is currently found eligible for services, the eligibility couldn’t even be addressed until it’s time to renew the eligibility. (I think once every 3 years). Even then, the criteria the schools are using don’t necessarily match the criteria they are using in the medical profession. I do think that EVENTUALLY it could be an issue for all of us. And I really worry for families who will be going through the process in a few years. Heather