This topic is a little complicated and research heavy so for simplicity sake, I am going to try to make this as quick and straightforward as possible.
We have to start with the DSM-5.
In 2013, the American Psychiatric Association released the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders (DSM-5).
The DSM-5 is the standard reference that doctors use to diagnose mental and behavioral conditions, including autism.
The previous edition of the DSM (DSM-4) had labels like Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS), Autism Spectrum Disorder (ASD), and Asperger’s Disorder.
When Isla was diagnosed years ago, the older DSM-4 criteria were still in place so Isla was ASD and PDD-NOS. Under PDD-NOS there was a category for “atypical” autism which is where Pathological Demand Avoidance (PDA) would have been.
But all of that has changed. The new DSM-V puts all patients under one umbrella of autism spectrum disorder and uses levels based on their social communication skills and restricted, repetitive behaviors. A patient with autism is assigned a level: level 1, level 2 or level 3.
So now, in regards to medical documentation, the best way to categorize Isla is “ASD level 2 with demand avoidance profiles.”
Even though PDA is not recognized as an official diagnosis the RESEARCH is GROWING! More and more podcasts and books and resources and petitions to add this as an official diagnosis are popping up all around the world.
What about ODD? For any of you smarties out there that have been following this series and thinking… uh… demand avoidance sounds a lot like defiance disorder, you are right… and wrong.
ODD stands for Oppositional Defiance Disorder and is a label and diagnosis used in the US medical world and schools.
ODD is typically diagnosed in early elementary school ages and stops being diagnosed around adolescence. Kids who have ODD show a pattern of behavior issues that include: unusually angry and irritable, frequently losing their temper, easily annoyed, arguing with authority figures, refusing to follow rules, deliberately annoying people, and blaming others for mistakes. This behavior has to be severe and pervasive for 6 months or more to be diagnosed as ODD.
ODD is NOT PDA.
ODD is “I won’t do it”.
PDA is “I can’t do it right now, because my anxiety is too high.”
ALSO … super important…
You can have ODD with autism -or- without autism.
PDA is ONLY AUTISM RELATED.
You CAN NOT have PDA without AUTISM.
So if PDA is not “officially recognized” in doctor’s offices or schools… what can a parent do?
You have to find people who believe you.
I know that is a sad answer but that is just the reality.
Isla’s teachers have read my book. They know the back story. I have given teachers and therapists other books and resources and guides to help brainstorm strategies to help Isla.
Since the release of my book and blog, we have found people who BELIEVE us and if they don’t, just a week or so with Isla and they are believers.
Bottom line… you have to get the people who work with your child to believe you. This is hard work. This is not fair. But there are a lot of people (me!) working hard to make sure the world hears more and more about PDA so that our children are more understood at home, in school and in our communities.
