See Below: TIPS, IDEAS & SUGGESTIONS TO UNDERSTAND A PDA DIAGNOSIS
Understanding Pathological Demand Avoidance, PDA
I only recently heard about PDA, Pathological Demand Avoidance, and PDA Diagnosis associated with Autism and ADHD.
A Clinical psychologist mentioned PDA Autism and PDA ADHD to me after discussing new challenging behaviors I was experiencing with my ADHD granddaughter.
As a mother of five grown children, now raising two special needs grandchildren, the psychologist felt that many of the behaviors I was seeing in my granddaughter were characteristics of Pathological Demand Avoidance, PDA Diagnosis.
Learning that children with a PDA diagnosis, frequently do not fit in with the typical diagnosis of autism was eye-opening to me. And because the symptoms are not standard for autism or ADHD, PDA can go undiagnosed.
This is especially true for females. Girls are often undiagnosed or misdiagnosed for autism, ADHD, and PDA, which can delay treatment for a PDA diagnosis.
What is Pathological Demand Avoidance?
PDA, known mostly as Pathological Demand Avoidance, is currently not a defined diagnosis in the United States. However, the US is beginning to acknowledge PDA diagnosis, or Pathological Demand Avoidance, as a subtype of autism and ADHD, Attention Deficit Hyperactivity Disorder.
PDA Autism and PDA ADHD are becoming more familiar among mental health professionals in the United States, as well as in other countries.
Several other countries, including the United Kingdom and Australia, have recognized PDA diagnosis for many years in neurodivergent children and adults.
PDA has also been coined as Pervasive Drive for Autonomy, which some medical professionals prefer since the name is less judgmental.
Regardless, either name causes individuals with a PDA diagnosis to avoid certain demands made on them and threatens their control for autonomy or choice.
For more information and resources go to the Pathological Demand Avoidance Society.
Could Past Trauma Contribute to My Grandchild’s PDA Diagnosis?
Seven years ago, I petitioned the court for custody of my then 8-year-old granddaughter and my 12-year-old grandson. Since then, I have been learning how to parent them through their deep-rooted traumas and emotional special needs.
The kids grew up with their parents, who both suffered from addiction and mental health issues.
But after years of providing financial, emotional, and mental health support to both their mom and dad, circumstances became out of control and the environment was not safe for the children.
Therefore, I sought and was awarded legal custody and have maintained it ever since. Happily, Mom, my daughter, spent the next several years getting clean and sober but still struggles with mental health concerns. Dad, who I believe is clean, is around-ish, but keeps his distance.
Although both kids see their parents from time to time, the courts have allowed them to remain in my legal care. So here I am after seven years, getting ready to retire, raising two more teenagers, and beginning to learn about the challenges of a PDA diagnosis.
In many, many ways it is scary as hell to add another layer of treatment on top of my grandkid’s Autism and ADHD diagnosis. But in some strange way, it answers what I’ve been trying to resolve for the past months….maybe even years.
While I may not truly know how or if my grandkid’s past traumas have or will affect their abilities, I honestly speculate, that trauma may play a part in their PDA diagnosis.
To see more information about childhood trauma, see How to Learn From These 5 Traumatic Childhood Experiences.
How to Manage a PDA Diagnosis?
Discovering that a PDA diagnosis is not only identified with autism but also with ADHD made me want to learn more about PDA. Mostly because my granddaughter, now a young teen, is showing classic signs of PDA ADHD.
After reviewing PDA characteristics for a PDA diagnosis, I felt like her picture could appear next to the definition!
Over the past several months my granddaughter has been overcome with nausea and vomiting. At first, I believed it to be a stomach bug, but her symptoms got worse and we ended up in the Emergency Room.
Once in the ER and waiting to be seen, she became erratic and overly emotional. She began screaming at me and the hospital staff insisting she needed help immediately and could not wait to be seen.
Her demeanor was frightening to everyone, especially me. Because it seemed to be out of character for her, I was scared and advocated for her needs. Once in a room, given IV fluids and attention, her behaviors lessened but didn’t end.
She was required to drink a liquid contrast for a CT scan of her abdomen but kept refusing to drink it. She was asked to give a urine sample but again refused. She pushed back each request (or demand) asked of her to help her feel better.
I thought it was the strangest attitude I witnessed in her and it was the first time I honestly noticed her resistance to others attempting to “help” or assist her.
After time she became compliant and they completed various tests. In the end, nothing was revealed through the hospital studies. She was calm and tired, so we were sent home around 2 a.m. to follow up with a gastroenterologist, which we did.
Finding Support for a PDA Diagnosis
Subsequently, that was only the beginning of many more trips to the Emergency Room for similar abdominal symptoms and concerns with my granddaughter. Additionally, she began losing a significant amount of weight, which was concerning.
Therefore, when her symptoms of extreme nausea and vomiting continued, she would beg to be taken back to the Emergency Room. Because I was concerned, I complied, but quite reluctantly! I say reluctantly because once in the ER she would create havoc yelling and screaming and demanding immediate action.
Regardless of how many times I or the hospital staff would try to explain the hospital protocols for treatment, she would have meltdowns and throw tantrums like a 2-year-old. Not only was it EXTREMELY frustrating, but it was also downright EMBARRASSING!!
And the biggest problem was, she didn’t care! AT ALL!!! She sat in a children’s hospital Emergency Room surrounded by at least 20-30 sick children under 5 years old and DEMANDED to be seen!
After eruptive behaviors, the receptionist told her she was scaring the other children and attempted to remove her from the ER waiting room and put her in a Sensory Room, but she flipped out.
Finally, she was taken back to a private room and she began to de-escalate. However, there were MANY more eruptions throughout her stay.
In the end, the hospital staff was happy to see her go and I was exhausted trying to keep her regulated. Because the bottom line is, that she is NOT regulated.
Regrettably, she has become a young teenage girl who refuses to take responsibility for her behaviors, her ADHD diagnosis, or her PDA diagnosis.
The truth is, because of the predisposed genetics of her parents, my granddaughter is at great risk for self-medicating with alcohol, marijuana, or other drugs.
So, at this point, it is vitally important to find support and help for her PDA diagnosis. I’m currently signed up for webinars, studying materials, and reading as much information as I can on PDA.
Regardless of the avenues I need to take, I will continue to search for the proper treatment and support for her ADHD and her PDA diagnosis.
Recognizing PDA Characteristics
Identifying PDA characteristics is important for accurate and correct diagnosis. When I first heard about PDA, I recognized many of the PDA characteristics in my granddaughter.
For years I’ve questioned the reasons for my granddaughter’s behaviors. Learning about PDAs has given me a better understanding of her actions.
Knowing the particular PDA characteristics will benefit in finding appropriate PDA diagnoses and treatment.
Some PDA Characteristics:
- Fights and avoids daily demands
- Wants (feels the need) to always be in control
- May not want to be involved in preferred activities
- Enjoys escape through fictional or imaginary ideas
- Experiences excessive mood swings and dysregulation
- Impulsivity
- Display sensory issues to sounds, smells, and tastes
- Overly obsessive toward someone or something
- Needs constant flexibility
- Enjoys role play or pretending
- Tantrums or meltdowns
What are PDA Symptoms?
While most children tend to avoid specific tasks or chores, children with PDA will refuse to do simple routine things, such as showering or getting themselves dressed. Additionally, they may complain about moving, walking, or extremely small physical activities.
Also, children with PDA can act out aggressively by screaming and shouting to avoid completing a task. PDA kids are known to exhibit tantrums and meltdowns if a demand is too difficult for them or even for easy responsibilities.
It is acknowledged that anxiety can be an overwhelming factor in the intense reactions of children with PDA. If a child does not feel they are in control, they can have a fight or flight response of panic.
Often if a child with PDA is triggered by anxiety that leads to an emotional eruption, it can be incorrectly diagnosed as Oppositional Defiant Disorder, ODD, or other behavioral conditions.
PDA Examples
Pathological Demand Avoidance affects children at home and school. The pattern of behavior is called pathological because it obstructs performance at school and home.
Avoidance is revealed in many ways, such as making excuses, changing subjects, retreating, interfering, evading, having a breakdown, or displaying excessive panic.
Children with PDA Autism or PDA ADHD are also considered to be inflexible and not tuned into others’ needs and routines. They may not feel they fit into social settings, especially if they feel demands are placed on them.
Often kids with PDA cannot complete ordinary routines, even though they are capable of doing them.
In school, children with a PDA diagnosis often do not follow classroom instructions. They may not understand schedules or social structures within the classroom.
Learning about PDA can help parents and children understand what triggers and motivates kids to become more successful and productive.
The Benefits of Learning About PDA Diagnosis for Autism & ADHD
Naturally, adding more new information or diagnoses may be difficult for children and parents. However, there are many benefits to learning about the various facets and treatments for PDA.
It is important to understand that having a PDA diagnosis does not mean more challenges in your child’s life.
It means finding new tools, practices, and techniques to provide constructive support for you and your child. And Hopefully I more peaceful and successful future!
TIPS, IDEAS & SUGGESTIONS TO UNDERSTAND A PDA DIAGNOSIS
- Remain calm! It is EXTREMELY important to remain calm during meltdowns and tantrums.
- DO NOT SHOUT! Screaming or shouting information or instructions at your PDA child will create overstimulation. Regardless of their outbursts, do not raise your voice.
- Talking in a soft, peaceful tone will help your child regulate their behavior.
- Identify your concerns with your child, but don’t continually dwell on every negative issue.
- State your concern and move on. Constantly repeating the same concerns will overwhelm your PDA child.
- Often a child with PDA will end their outbursts (that could have been AWFUL) and simply move on as if nothing happened.
- My PDA child typically will not remember most information or communication stated during a meltdown.
- DON’T HOLD GRUDGES!! This is a hard one because PDA kids can behave erratically, so it’s difficult to not be angry or upset with them after a disruptive episode.
- Generally, their brain cannot effectively recall their actions or their emotions. Therefore, they move on!
- As kids get older, they need to learn strategies to help themselves regulate and control behaviors.
