In January a news release was sent out by the Americal Psychiatric Associaition discussing changes to the diagnosis of autism. After several doctors in the field of autism and autism organizations have looked over the changes and come forward it becomes clear change is in the wind. The idea is to prevent autism from becoming a pet diagnosis or newest trendiest diagnosis.
If you ever run into a doctor that diagnoses as per what is trendy let me know I never have!
The changes involved will cut possibly large swaths of borderline but needy children from receiving quality care. The higher functioning, more intellectually able children will be the first cut out of the new criteria. If you or your child has a diagnosis of PDD/NOS or Asperger Syndrome you will need to be either be redefined as having autism or leave the doctor with nothing.
From ABC News, “People tend to think that the more severely impacted children need the most services. But often these high-functioning individuals with enough help could either move out of the spectrum or live more functional lives with dignity,” Warner said. “If the Volkmar group is correct, I’m very worried for that segment of families.”
I start to wonder why the change in criteria. Why not educate doctors and pediatricians better? Is there truly a medical dilemma, a change in some understanding of autism that no one has told me about? Then I read this article and the truth comes to light.
From the article A Specialists’ Debate on Autism Has Many Worried Observers By AMY HARMON Published: January 20, 2012,
in the New York Times, “We have to make sure not everybody who is a little odd gets a diagnosis of autism or Asperger disorder,” said Dr. David J. Kupfer, a professor of psychiatry at the University of Pittsburgh and chairman of the task force making the revisions, which are still subject to change. “It involves a use of treatment resources. It becomes a cost issue.”
Ah so now we get down to it, money. Therapy for children with autism comes at a high cost. There is also the disability checks some children and adults with autism have to live on because their social and communication skills are so weak they cannot work and support themselves. Tightening up the criteria will definitely make it harder for those people to continue receiving disability checks, state insurance, and group home placements. Just to be sure we are ready in 20 years for the kids NOT getting therapy and treatment now, lets take that money that would help them and start a homeless fund for those children that become adults without support and end up on the streets.
All that aside… what is a change like what is proposed going to do to the autism community?
It has turned many of the community against each other. Across forums, Facebook pages, and email groups I have heard the same refrain from completely different people. “My kid is sicker than yours therefore we deserve the diagnosis of autism.” “So many HFA aren’t really autistic.” “Asperger Syndrome is more a mental health issues then a true biological problem.”
I completely understand that there are children that are more affected and less affected then my autistic children. Why isn’t there room for us ALL?
I have even had a scientist argue with me that my children are not really autistic since they have brain damage from our genetic disease. Does that then mean that a child with cerebral palsy can’t have autism, or a child with bi-polor disorder cannot also have Asperger Syndrome? The undertone of all these attacks is unsettling and I feel like the end result is to shut parents up, especially parents of children that aren’t a clear cut ‘old fashioned’ autism diagnosis.
I have seen adults that have Asperger Syndrome and were told for years it was in their head and their fault. They have been through the gamut but always on the edge of a diagnosis. Misdiagnosed with other issues like mental illness and treated heavily with medications to fix what was a biological hard wiring in her brain.. She has Asperger Syndrome. My heart breaks for her incredibly tough, guilt filled life, because the criteria for autism was too restrictive.
My plea today is that we not devolve this discussion into a war on who’s child is worse off. Or who is more deserving the PDD/NOS group or the Asperger Syndrome group to be folded into the autism umbrella. It is sickening to me that we have to fight so hard to get the needed treatments, and assistance for our children only to have it ripped out from under them because the numbers for the CDC look bad or the cost is high.
What hurts even worse is when we as a community pulled together around the issue of autism to help, and support one another. Allows this money grab and internal medical politics to hurt us all!
We need to pull together and fight for the sake of our children and since autism has a large genetic component you maybe fighting for your grandchild too!
Other blogs on this subject: (if you have written about this please leave a comment and I will add you. I accept ALL viewpoints just keep it G-rated.)