What is PDA and why does it matter?
Pathological demand avoidance (PDA) is a relatively new term in the world of mental health, but it can be the answer for families who are struggling to understand their loved ones with this particular type of autism.
PDA is a subtype of autism—so people with this condition must also meet the criteria for autism spectrum disorder. PDA is characterized by intense anxiety when faced with any type of demand. It was first studied in the UK in the 1980s and 1990s and is slowly becoming more well-known and understood in the United States.
Also Read: Could You Have PDA Recognizing The Signs And Symptoms?
To break it down a little, we can consider each part of the term Pathological Demand Avoidance.
Pathological: This is out of the person’s control. People with this condition cannot help but react in the ways they do. It is innate.
Demand: Any type of expectation or request that is made of the person, either by other individuals (parents, teachers, bosses, roommates, etc.) or by themselves (an internal drive to finish a particular book, or excitement about taking a specific class).
Avoidance: Individuals with this condition often have meltdowns, pretend to other people or even animals, or act in ways to avoid and escape situations where demands are present.
Some people might feel that a PDA distinction is not important or necessary, because an Autism Spectrum Disorder diagnosis should be sufficient for an individual to access the help and services they need to be successful in school and other situations. However, people with a PDA profile often need supports that are very different from those required by a typical autistic individual. Things like rewards, schedules, and consistent expectations work very well for many individuals with autism but can backfire for people with PDA.
On top of that, understanding the anxiety behind PDA can be incredibly important. Educators and providers that can see the anxiety and panic behind PDA and the sometimes extreme reactions and meltdowns are often more able to empathize and react in a much more helpful way than those that see opposition, defiance, and other “bad” behaviors. Unfortunately, many children with undiagnosed PDA tend to be homeschooled, since their needs are not being met in the public school system.
Getting a diagnosis of PDA is a problem right now because many providers are unfamiliar with PDA. Thanks to the advocacy efforts of a few people, including Diane Gould, this is slowly changing. For now, many parents are finding support from other parents and having to educate schools and providers. PDANorthAmerica.com is a great resource for those who are new to learning about PDA or want to learn more—I plan to feature Diane Gould in a guest blog post in the next few months!
Are you seeking a provider who recognizes and understands PDA? Dr. Jessica Myszak has over 10 years of experience evaluating children and adults for autism. She offers telehealth evaluations for individuals in Arizona, Colorado, Delaware, Georgia, Illinois, Missouri, Nebraska, New Hampshire, North Carolina, Nevada, Oklahoma, Tennessee, Texas, Utah, Pennsylvania, Virginia, Washington DC, and soon, Kentucky, Alabama, and Wisconsin. If you are interested in learning more about potentially working with her, you can visit her website here or email her here to get the process started.