My Son’s Pathological Demand Avoidance (PDA) Traits

By Michelle

Pathological demand avoidance (PDA) is a subtype of autism that is currently only recognized in certain countries like in the United Kingdom. However, there are plenty of autistic children all over the world who are exhibiting signs of PDA and need to be supported.

It is important to observe your child for such signs as the intervention methods tend to differ for this subtype of children. PDA is driven by very high anxiety. Research is still ongoing about its causes, but it is likely a combination of both genes and environmental factors.

To be considered as PDA, a child must meet the official autism diagnostic criteria and the PDA profile. You can read about the PDA profile here.

Here are some of my son’s traits that made me realize there was something other than autism going on:

He is quite non-compliant and some might label him as “defiant” or “stubborn”.
While many children are stubborn, the difference with my son is, he will even avoid doing fun things when asked. For example, if we buy him a new toy and ask him to play with it, he will just stress out and leave. For most kids, they would be happy to play with something new. However, if we just left the new toy lying around, he will explore it. The reason is because “asking” him to do anything is perceived as a demand which triggers his fight or flight anxiety response.

I noticed most of his behaviors happen when there is a request or demand attached to it.

This is consistent at home and in therapy. In a zero-demand environment, he is a very sweet child and rarely cause trouble. In fact, since he was a toddler, we referred to him as Dr. Jekyll and Mr. Hyde, as his behavior can be so extreme and unpredictable.

 “People with PDA can be controlling and dominating, especially when they feel anxious and are not in charge. Many parents describe their PDA child as a ‘Jekyll and Hyde’ character. It is important to recognise that these children have a hidden disability and often appear ‘normal’ to others” (Source here)

He has more social skills than a typical autistic child.

My son has always been loving and sociable with us. He would kiss us and laugh with us. We did all sorts of intervention for his autism and social interaction was the area he excelled the quickest. He loves all his therapists and can play with them easily.

However, he uses his social skills to avoid demands and he has been doing so from as young as 2 years old.

The first time we realized he was avoiding demands was during ABA in-home therapy which we tried out for 3 months. He would often ask for snacks, milk, to go playground or even pretend to lie down and sleep for a while during sessions, only to get up again when therapy time is almost up. His therapists and I realized after a while that this could be his way of trying to get out of doing the tasks. This was confirmed during year end break when suddenly all these behaviours stopped. He continues to do so in every single therapy we enrolled him in since. Even while I am homeschooling him, when I turn my back to take something, that’s his cue to run away. There were even occasions where he would kiss me many times in the middle of class, as though he is trying to distract me from asking him to do the task

He has very high anxiety. Many autistic kids have anxiety, but I noticed for years that my son seemed to be on the extreme side of anxiety.

Even asking simple things of him like going out the door can make him anxious despite him knowing we are going somewhere he likes. This is because asking him to leave the house is seen as a “demand” hence triggering him. He also boycotts entire food groups whenever he has one bad experience. For example, he had a bad gag on omelet and rice once, then went on a 3 day food strike (eating only biscuits) before accepting rice again. But ever since, he has rejected all forms of eggs because he appears “traumatized” by that incident. His therapists also noted very strong episodic memory which makes him remember all the bad experiences he had.

Teaching via repetition doesn’t work well with him.
Many autistic therapies use repetition and a very structured way of teaching (ie: visual schedules, choice boards, flash cards etc.). My son has always been very resistant to this way of teaching. To get him to move his hand to make a choice can take 10 minutes and if you try to “force” him he will either leave the room or meltdown. His therapist said that he knows the answers to the questions because he looked at the correct answer. He just wouldn’t move his hand to show us. It is as though he has performance anxiety. Also, if he does do the task once, he isn’t going to be happy doing it again. The repetition feels too demanding for him.

Lastly, this is probably the most concerning trait, he seems to have slow progress, no progress or regression in typical therapies offered for autistic children.
It is as though he is therapy resistant. We have tried it all, ABA Therapy, Occupational Therapy (OT), Speech Therapy (ST), Music Therapy and Early Intervention Centres. The only therapy that works so far is his current Occupational Therapy at Oasis Place and Son-Rise program because these two are heavily play based and uses a gentle approach. Any other therapies that look like a “classroom” or have activities / tasks / goals to achieve doesn’t work well with him. He needs an environment with almost zero demands.

If you notice your child having such traits, do bring up PDA or high anxiety to your child’s therapist or doctor. It is not very well known here so it is also best to supplement with your own research and learn methods of supporting children with PDA.