What is PDA?

PDA, or Pathological Demand Avoidance, is a subtype of autism that can be challenging both to recognize and diagnose and also to manage, because it often doesn’t “look” like autism typically does, and many of the strategies that work well for autistic students are pretty ineffective and even negative for students with PDA.

Children and adults with Pathological demand avoidance often have significant anxiety which is triggered by everyday demands and can result in meltdowns, explosive behavior, and other difficulties meeting those demands.

To be clear, a person cannot have Pathological demand avoidance without having a diagnosis of autism, but it’s a lot different than what most people think of when they think about classic autism.

One way to think of it might be the way there are subtypes of ADHD—there is predominately hyperactive type, predominately inattentive type, and combined type—so if you are expecting everyone with ADHD to look hyperactive, someone with inattentive type ADHD would look completely different—but they would still have the same underlying difficulties with attention

Signs of PDA

Individuals with Pathological demand avoidance must meet the criteria for autism, so there must be some deficits in social communication and social interaction in multiple contexts—with back and forth interactions, nonverbal behaviors, and difficulties with relationships. This piece can sometimes be a little more difficult to assess because children with PDA can LOOK like they are social—but on closer inspection, there are some differences—maybe they are bossing the other children around, or maybe they are acting as a character in a book or a show, rather than being authentically themselves. There must also be some restricted and repetitive patterns of behavior, interests, or activities. This might look like stereotyped movements, inflexibility with changes to routines, such as having extreme distress at small changes, difficulties with transitions, or rigid thinking patterns—this one is pretty common in kids with PDA. It might look like restricted, fixated interests—this might be on a particular object, show, or even a person. Or it might look like differences to sensory input—either being more or less sensitive to sensory input—lights, sounds, smells, or touch.

On top of meeting criteria for autism, children with Pathological demand avoidance have intense emotions and extreme mood swings. They often have many strategies to avoid doing things they don’t want to do, and typical discipline, with rewards and consequences, does not work. Many of these children struggle with getting to school and in the past year, 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.

Evaluating Children for PDA

I start with a parent interview, where I invite parents to share their concerns and systematically go through the things they are noticing with their children. This can sometimes take 2 hours or more, but I think it is really important to make sure that parents can share everything they find relevant. Part of assessing for PDA is ruling out any other mental health conditions, so I have parents and teachers complete standardized measures to assess the child’s behavior and other skills and attributes compared to their peers, and then I work with the child—I typically start by assessing a child’s cognitive and academic functioning and then do several measures to look at autistic characteristics. Sometimes certain things will come up as problematic, and I can look further into specific areas of functioning to pinpoint areas of difficulty. Once I have the opportunity to look at all the areas I need to, I look at all of the information together and put it together in a report to share with families. I do a feedback session with the parents, and then if the child is old enough, I do a feedback session with the child as well.

Part of working with children with PDA is knowing that things may not always go the way I expect. I always tell parents that my goal is to be able to get all the information I am looking for, and I am often able to get a good rapport going with children, and I offer them lots of choices with the way we approach the evaluation, but if a child gets overwhelmed and we cannot get a specific test completed, I am still getting lots of qualitative information from that situation.

Girls are socialized very different than boys, and they are much better at masking, so it can be really frustrating for families when they are seeing these really extreme behaviors at home and teachers are not noticing any difficulties. Or, if schools or other people are seeing these behaviors, they are often interpreted as other conditions, like oppositional defiant disorder or disruptive mood dysregulation disorder.

Dr. Myszak and the Help and Healing Center

I do comprehensive psychological evaluations to assess for autism, ADHD, learning difficulties, or other conditions, including PDA. I have experience with autism over the life span, so I assess for autism with very young children and also with adults, many of whom are considering a diagnosis for the first time.

For adults, I do about 90% of these over telehealth, and with children, I am currently about 50% telehealth and 50% in person. A silver lining of COVID-19 was that it really pushed the field of psychology and me personally into learning how to do our job using telehealth—it’s not the best fit for everyone, but it can work very, very well with many people, including many children. I’m in the Chicago suburbs, but I have capabilities for telehealth in 27 states right now, which is pretty awesome. I also do a small amount of PCIT therapy which is parent coaching for young children with behavior problems.

I’ve also started a Tiktok account to provide content about autism, including adult autism and PDA.

If it is PDA, then what?

Young children can benefit from play-based therapy or other child-centered programs—there is a newer program called the Balance Program, which is fairly similar to the first part of PCIT therapy, which can be really helpful. Creating a safe space for the child, managing expectations, and treating meltdowns as panic attacks rather than bad behavior can really change the whole perspective.

I also think that having a diagnosis can help families get the support they need—too often, the families that I’ve worked with have been put down by others because people think they are just being too lenient, or are not doing their job as parents. This can be really discouraging for families and I think having this information and diagnosis can help them communicate what is going on.

I think there is a ton of value in finding community—I know many of the parents I have spoken to while doing evaluations have found such relief in finding other families who have similar struggles. It can be incredibly isolating to do it all by yourself. And with the internet, that is easier to do than ever before.

I also recommend trying to find positive outcomes each day. It can be very challenging to parent a child with PDA, and it can be easy to get sucked into the negativity—make sure you are noticing and appreciating when things go well. And keep track of what you are trying, and what works. It can be easy to forget that strategy that worked so well, especially if you are having a really tough day, or week, or month. If something works, do more of it.

I really do believe that teachers and schools want to serve all children to the best they can, and it can be a really hard job. PDA accommodations can be tough to implement, and they can be time-consuming and personnel-intensive. I typically suggest approaching the situation in a collaborative, on the same team way—it can be a very long 12 years if every conversation is a battle. But know your rights, and don’t be afraid to get an advocate or even a special education attorney if your child is not getting what they need.

Dr. Jessica Myszak has had over 10 years of experience performing psychological evaluations with children and adults. She offers both in-person and telehealth evaluations. In addition to seeing clients on the Chicago North Shore, she is able to work with families who reside in Arizona, Colorado, Delaware, Florida, Georgia, Illinois, Missouri, Nebraska, New Hampshire, Nevada, Oklahoma, Tennessee, Texas, Utah, Pennsylvania, Virginia, and North Carolina, Washington DC, Wisconsin, and soon, Alabama and Kentucky! 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.