Understanding pathological demand avoidance (PDA) for the first time can be scary and eye-opening, especially if your child has autism. All those behaviors can be puzzling, and if I am going to be transparent here, like most parents, I took those odd behaviors and traits personally. I questioned my parenting abilities. PDA is a profile under the autism umbrella where people avoid daily demands, often utilizing social strategies such as distractions and hypoarousal or hyperarousal states.

The underlying cause for this avoidance is the child experiencing high anxiety levels. The high level of anxiety is usually based on expectations of demands placed on the child with a PDA. These high levels of anxiety can lead to a sense of not being in control of a situation. If you want to learn more about PDA and autism, check out this link.

Understanding pathological demand avoidance

Below is a list of characteristics and traits of PDA.

• A resistance or avoidance of the typical demands of life (such as showering, brushing teeth, getting dressed, going to bed, or school projects)
• Use of social strategies to avoid those demands (finds distractions, make excuses, pretend they can’t walk, shutdown, or blow up)
• Appearance of social ability without social understanding (child wants to be co-teacher or co-parent)
• Heightened emotions or excessive mood swings (perceived loss of autonomy activates an extreme threat response – hyperarousal or hypoarousal response)
• Comfortability using role or pretend play
• Obsessive behavior that often focuses on people (can show up as love or hate)
• Strong need for control over their environment
• Difficulty completing none preferred tasks
• Appears sociable on the surface, but can say shocking or out of the ordinary comments
• They tend to sabotage friendships

Therefore, I want to help because it was so challenging for me. After all, I was in the dark. Why is this information so important? About a month ago, my son’s therapist asked me if I knew about PDA (pathological demand avoidance). I was clueless, and he was shocked. I am intelligent, yet there is always new information from other countries that it can take a while to reach the United States.

What made me feel a little better was he didn’t even know about it, and he is a trauma specialist. His client told him about it. That is why continued education is critical for all mental health professionals. People need to be up to speed and up to date with all the latest information on mental health discoveries. Yet, still, there is so much information and so little time.

When he looked up the behaviors and traits, he said, “The first person I thought of was your child. We have been struggling with this for years and months in therapy. This is your kiddo in a nutshell.” When he read me the behaviors and traits, a light bulb went inside my head. This information was gold, and I had to share it.

Understanding pathological demand avoidance

Understanding pathological demand avoidance at first can seem overwhelming. The way we communicate and parent must change, but it takes practice. What puzzled my son’s therapist is he has had four neuropsychological evaluations by psychologist, and none mentioned or diagnosed him with PDA. That missing profile of PDA, which is woven into autism, should be included in a child’s evaluation or assessment because it is information that everyone must have to learn how to support the child better. That is why parents have their children take a neuropsychological evaluation.

Parents want to learn how to understand better their child’s unique needs and what tools or resources are available based on the evaluation’s final results. Leaving that vital information out leaves the parents, therapists, psychiatrists, teachers, caregivers, family members, peers, and children in the DARK. This needs to change because children are not getting the proper treatment and support they need at home, school and developing healthy life skills. This should explain why many mental health professionals and autism teachers do not know about PDAs. In my research to better understand and support my son, I discovered that PDA (pathological demand avoidance) is not in the DSM5.

Why is PDA not in the DSM5

So, why is PDA not in the DSM5? PDA is only under the umbrella of autism, BUT trying to find PDA within the autism umbrella was highly challenging. In fact, I could not find it on the Internet. Therefore, if I cannot find it, others cannot either. This means many other loving and supportive individuals cannot either. Can you understand why I want to help? I hope so. Therefore, PDA is more about the traits and characteristics based on particular kiddos with autism. And PDA is linked to trauma. I have talked a lot about trauma in the past. So, PDA might show up because the trauma one experiences with authority figures are closely woven into many PDA hyperarousal and hypoarousal traits and behaviors. My son had 90% of the PDA warning signs.

How can PDA be misdiagnosed

Unfortunately, people like my son often face misunderstanding and misdiagnosis. PDA can mask or influence the presentation of the autistic traits. This could explain how can PDA be misdiagnosed. This “masking and suttle influence” can lead to confusion and difficulty in identifying the various autism umbrella characteristics and traits. Additionally, PDA can often go unrecognized and is frequently misdiagnosed with behavioral disorders (such as ADHD, ADD, ODD, and other conduct disorders).

In my research about PDA, I discovered that many people can notice that there are similar traits to narcissism, but they are not narcissistic. Let me explain. When the child is in a hyper-arousal state, that child will explode into anger. The temper, tone of voice, lack of empathy, and need to be in control can be overwhelming and scary for any parent. The child or teenager has an anxiety attack, the heart is racing, and people get confused.

The child is trying to find a sense of control by using force. Remember the map of consciousness? In the book, The PDA Paradox, he talks about how some behaviors and traits can come across as being narcissistic, confusing people. Yet, he still did not discuss what I discovered to be the most valuable information for society.

As you all know, I wrote the book, The Undetected Narcissist. Looking back at what we experienced, I can see the first signs of PDA. Our son did not have PDA was he was younger. He would joyfully get dressed, shower, brush his teeth, and go to bed on time. The PDA behaviors showed up when he felt helpless, out of control, and his father was creating the drama to change custody when he was around seven or eight. If you have read the book, I want you to see if you can see what I see because there is a pattern of behavior.

PDA will trigger either two different responses when a person experiences anxiety or stress. There will either be a hyper-arousal (fight or flight) or go into hypo-arousal (collapse and helpless state). In fact, all human’s have these two responses, which I will upack in my next blog post/podcast. Let me explain.

At first, we all will feel this need to fight back when someone is trying to dominate or control us. Kids talk back and parents can yell back. This would be considered hyper-arousal. Hyper-arousal is where the person is mobilized into:

• Panic
• Fear
• Worry
• Irritation
• Impulsivity
• Heart races
• Increased stress hormones
• Agression
• Sense of threat
• Sympathetic mode of fight or flight

Yet, from my experience and observation from raising my son, the child becomes more and more reactive when the anxiety is not resolved and keeps escalating. The threat never disappears, and the person can become hypervigilant. His window of tolerance shrinks, making it extremely challeging for him to manage the stress response placed upon his little body. That is why our son was diagnosed with ADHD, but PDA can appear to be ADHD by accident.

The challenging part of being a parent is when a child displays all these red flag behaviors; a parent can be easily blamed for their parenting abilities or lack of parenting abilities. As you all know, I was accused in family court of my son’s PDA autism behaviors, and there was a lot. Over 100 school documented meltdowns, and it was all my fault. Crazy as it sounds, this happens every day to other parents because it is easier to find blame than to accept the child has a mental health issue that a mental health professional has not discovered.

Since everyone was in the dark about PDA, my son was taken away from me for eight months (a loving, nurturing parent), and our son was sent to live with the person that gave him complex PTSD, extremely authoritarian, and a covert narcissist. It is entirely wrong and hard to wrap one’s head around it, but I can see the links between trauma, autism, and PDA. My book should be a road map for what to expect when dealing with family law and autism. It is not a happy story, but family law needs to wake up to this form of abuse and legal injustice.

Family law and autism

I don’t want to seem like I am about to go into a rant, but families are suffering across the United States. I feel that family law and autism need a reality check. Why? What my son and I experienced happens every day in family court because autism behaviors are easily blamed on a caregiver or parent. It is hard to defend yourself against it in court. Because family law is not up to speed with autism and PDA behaviors, children with autism are traumatized and misunderstood.

When someone cannot explain why the child is acting out, the easy way out is to play the blame game—playing the blame game then puts the burden on the individual and their parents or parent for their explosive meltdowns and responses to autonomy threats. This can leave parents feeling helpless and confused after trying a variety of therapies, medications, and parenting tactics. I know I was confused and felt helpless often. And it shocked everyone that the judge believed that all his autism behaviors would go away if he lived with his father. But let me explain my son and the judge’s logic.

Why do we have a mental health crisis in the USA

Our son was “masking” when he was with his father. At the time, I did not know about autism masking, and nobody else did. That means even the therapist, psychologist, or psychiatrist did not know about masking. Therefore, fault finding was easier. The child behaves at the father’s house and acts out at the mother’s. The logical conclusion would be to blame the mother. Therefore, the mother is guilty in the eyes of the family court because the behaviors are unexplainable by mental health professionals.

Here is what I discovered about masking. ” Masking is a complex and costly survival strategy for autistic people. It generally involves intentionally learning neurotypical behaviors and mimicking them in social settings. Sometimes masking focuses on hiding behaviors that people feel won’t be accepted.

Masking autism may sometimes help protect autistic people from being “outed” or harassed at school or work. This behavior is not always intentional which can lead to confusion about a person’s identity.

Regardless of intentionality, masking can also lead to serious health consequences, so it’s important to understand the behavior and its effects on people who regularly mask their neurodivergent behaviors.“

Family law does not understand autism

He was masking and pretending to be “normal.” Often I heard his father and father’s biological mother say to our son and myself, “We just wish he was normal.” Imagine what that must do to an autistic child’s sense of self. It can be soul-crushing not to be accepted by his own family. It explains why he clung to me for safety, compassion, love, and security. He could not be his authentic autistic self around his father.

Masking for several days can be exhausting. It explained why he would cry and have a meltdown when he was dropped off at school or home. He hated masking! He just wanted to be loved and accepted by his father but felt he could not be himself.

Why family law and autism is a broken system

My son’s therapist told me I was given the best compliment nobody wanted to hear. My son acted out in my home because he felt safe and loved. He knew I would not shame, insult, punish, or hurt him. He trusted me.

What I could not do was tell him to act out at his father’s house because I was being blamed for his behaviors at school and my house. I could not tell him it was a clever trap that would fool everyone in family court. Eventually, my son figured out the web of lies and took matters into his own hands.

Again, I wrote the book to prevent this form of misdiagnosis when it comes to autism, to protect families, and to save lives. Therefore, the judge did what she thought was best for our son because he would be on his best behavior at his father’s house. She did not know she was making a big mistake. She apologized when she returned my son to me and even shed a tear.

I do not hate her. I hope she learned a valuable lesson about family court, autism, and PDA. Family law must get up to speed in understanding autism and PDA because family law will misdiagnose autistic behaviors and focus solely on blame.

Understand PDA and autism

Therefore, it is crucial to recognize and understand the characteristics of PDA to support individuals with PDA and loving, nurturing parents. Identifying and understanding the characteristics of a PDA is essential for effectively supporting someone with PDA and everyone in the individual’s life. Because there are a mixed bag of information out there.

Also, the neurodivergent nervous system tends to be more rigid. This means it can more easily flip into a stressed state. When someone with PDA is in a stressful state, it can make simple, everyday demands like “put on your shoes or brushing your teeth” challenging. Therefore, low-demand parenting approaches and indirect request communication are often recommended to support individuals with PDA. That’s why it is recommended to focus on reducing demands and offering “choices” that promote freedom and independence.

In my next blog post, I will dive deeper into understanding pathological demand avoidance. I want to educate everyone about the following:

• The Window of Tolerance
• Hyperarousal
• Hypoarousal
• Nervous System Check-in

References:

1. https://www.autismparentingmagazine.com/pathological-demand-avoidance-autism/
2. https://neurodivergentinsights.com/autism-infographics/autism-pda-explained
3. https://www.healthline.com/health/autism/autism-masking