I’d like to introduce a new colleague of mine, Jessica Myszak. We have a shared interest in supporting neurodivergent clients with evaluations and therapy. Since we are both credentialed with PsyPact, we can support clients through telehealth in many states. I asked Jessica to share some information about an emerging subtype of Autism in children – Pathological Demand Avoidance or PDA.
Pathological demand avoidance (PDA) was first studied in the UK in the 1980s and 1990s and is slowly becoming more well-known and understood in the US. It 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 one with this particular type of autism.
What is Pathological Demand Avoidance?
PDA is a subtype of autism that is characterized by intense anxiety when faced with any type of demand. People with this condition must also meet the criteria for autism spectrum disorder. Still, PDA can be challenging to recognize, diagnose, and even manage because it often doesn’t “look” like what autism typically does. Many of the strategies that work well for autistic students are pretty ineffective and even negative for students with PDA. Also, children and adults with PDA often have significant anxiety which is triggered by everyday demands. This can result in meltdowns, explosive behavior, and other difficulties managing them.
To be clear, a person cannot have PDA without having a diagnosis of autism. PDA, however, is a lot different than what most people think of when they think about classic autism. This is similar with ADHD and its three subtypes. There is predominately hyperactive type, predominately inattentive type, and combined type. If you are expecting everyone with ADHD to look hyperactive, someone with inattentive type ADHD would look completely different. Nonetheless, both would still have the same underlying difficulties with attention.
To better understand PDA, you 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 to react in the ways they react. 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. They 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. They might even feel that an Autism diagnosis should be sufficient for an individual to access the help and services they need. However, people with a PDA profile often need supports that are very different from those required by a typical autistic individual. They may be disinterested with the things that work very well for many autistic individuals–like rewards, schedules, and consistent expectations.
Anxiety and Autism
It is incredibly important to understand the anxiety and panic behind PDA. Educators and providers that can see beyond these, as well as the sometimes extreme reactions and meltdowns, are often able to empathize and react in a much more helpful way. Some people, however, may only see opposition, defiance, and other “bad” behaviors. This is why many children with undiagnosed PDA tend to be homeschooled. Many of them struggle since their needs are not being met in the public school system. And in the past year, these children with undiagnosed PDA really struggled with virtual school. Parents of these kids have described to me that they often feel like they are trying to sell everything. Or they are doing a daily 12-hour improv set to get their child to complete just the normal daily expectations.
Importance of Diagnosis
Too often, the families that I’ve worked with have been put down by others who think they are just being too lenient. They were regarded as parents who are not doing their jobs, which can be really discouraging for them. Hence, families can now get the support they need with this information and diagnosis of PDA. This can help them communicate what is going on. Since it can be incredibly isolating to do it all by yourself, finding other families who have similar struggles can also help. Many of the parents I have spoken to while doing evaluations have found such relief in this. There is, indeed, a ton of value in finding community. And with the internet, that is easier to do than ever before.
Next Steps
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 the following states:
Arizona, Colorado, Delaware, Georgia, Illinois, Missouri, Nebraska, New Hampshire, North Carolina, Nevada, Ohio, Oklahoma, Tennessee, Texas, Utah, Pennsylvania, Virginia, Washington DC, Florida, Kentucky, Alabama, and Wisconsin.
If you are interested in potentially working with her, you can visit her website here or email her here to get the process started.
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