Individualizing Support Through a Caring Relationship: Supporting PDA

PHOTO CREDIT: cottonbro studio

This Episode’s Guests

Dr. Stephen Shore is an Autistic self-advocate and a Professor of Special Education at Adelphi University in New York. He combines his personal and practical and academic experiences to provide fulfilling and productive lives for autistic people as the rule, rather than the exception. He serves on numerous autism-related boards. He has travelled to 58 countries talking about autism.

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Why Are Some Individuals Demand Avoidant?

Dr. Naseef became interested in this topic when parents would come to him overwhelmed with yet another diagnosis for their child: Pathological Demand Avoidance. Dr. Shore’s interest is in better explaining how the avoidance behaviours in individuals are occurring. We can look at what’s happening with sensory differences and cognitively. Autistics perceive the environment differently and how they think is different, especially when something unexpected happens and demands are placed upon them. 

And we have to include understanding the emotions, Dr. Shore adds. I shared that from a parent’s perspectives, parents have children who melt down at any kind of demand, which ranges from not wanting to do something–including things they liked doing before–to the child being so particular about how the parent must do things a certain way and/or can’t touch certain things. It must be so overwhelming for this child when they can’t predict what’s happening. They’re so scared that any kind of demand feels like such a threat and puts them in a fight or flight mode of high anxiety.

Dr. Shore says that this makes a lot of sense because the world is less predictable for autistic people, so it’s a desperate attempt to maintain some sort of order in the world. We can better explain why this is happening and then provide supportive tools to empower the autistic person to realize that they have the capacity to make changes. In their article, for example, they mention that in the workplace, breaktime might be at 10:30 but if an autistic employee has a grueling interaction that finishes at 10, let’s be flexible and let them take a break at 10 instead of their breaktime at 10:30. 

It’s Not a Pathology

Dr. Naseef says that everyone has things that they don’t like to do when we’re demanded to do it. There’s something essentially human here, but the problem is pathologizing the need for an individual to push back and say they don’t want to do that. So, when you’re talking about a child with limited language, the pushback might be a meltdown like, “I don’t want to do it, or I can’t do it , or I can’t do it right now. Can’t you see I’m busy?“

The term came up around the early 2000s by developmental psychologist Elizabeth Newsom in the UK. It became widely known in the UK and it’s spread around the English-speaking world. It’s putting another label on individuals, and for families, it sounds like another pathology or sickness to fix.

Parents are really upset when this comes up, Dr. Naseef shares. At a father’s conference, a Dad was overwhelmed that his child had just got a second diagnosis and was told that ABA therapy would not cure this. Dr. Naseef said that some kinds of ABA therapy might have caused it. You may be creating resistance instead of teaching a skill when you are demanding a child perform something the same way, correctly, 7 out of 10 times. So let’s instead look at it from the point of view of the individuals developing the skills to navigate the real world.

We must consider the sensory environment and how autistics perceive and understand things differently. The demand might not seem like a serious demand to some, but to the individual, it seems like overwhelming pressure, Dr. Shore concurs. To the allistic (i.e., non-autistic) person, it’s necessary to comply immediately and you have no choice. When that demand is placed on autistics when you’re thinking about something else or doing something else, that is hard, he asserts.

“PDA” Is Rational

PDA is not about a child being resistant on purpose. A neurodiversity-affirming term is “Persistent Drive for Autonomy,” which has been adopted by many autistics who are really incapable of complying when they’re overwhelmed with sensory information or in a monotropic focus. 

Occupational therapist Kerri Ciskowski gave the example of a parent watching their favourite show. I changed the example to a baseball example. It’s the bottom of the 9th, the bases are loaded, it’s the World Series, and someone pulls you away from it. It’s what your child experiences when you are making demands on them!

Dr. Naseef says that a parent will also get an Oppositional Defiant Disorder (ODD) diagnosis which is a psychiatric term that makes their child sound even more impaired or defective to them. What Dr. Naseef says him and Dr. Shore are trying to do in this new article, like neurodiversity-affirming people everywhere, is to see people as part of the human spectrum rather than stigmatizing children and families further.

There’s a rational reason to protest if you want to see the end of the World Series game, Dr. Naseef confirms! It’s rational, not irrational. So what are the skills that the individual needs? I added that we want to figure out the skills that parents raising an autistic child need. Dr. Shore adds, “or anyone who comes in contact or is supporting the autistic individuals.“

Autism is a Study of Extremes

Autism is a study of extremes, Dr. Shore explains. When we talk about skill sets, some things we’re incredible good at; others things, we often need a lot of support and there often isn’t that much in between. Even if you just look at the title, “Extreme Demand Avoidance” and various others, yes, we’re a study of extremes, Dr. Shore continues. So, the more we can understand that and work with this, as opposed to against it, the better.

In other words, Dr. Shore continues, let’s think about “acceptance.” This is a characteristic and it’s something that we need to work with, then we can move along what Dr. Shore calls his 4 A’s of Autism towards appreciating autistic people for who we are. I recited the 4 A’s: Awareness, Acceptance, Appreciation, and Action. I shared that at a recent PESI presentation, Dr. Jeff Guenzel and Dr. Robert Jason Grant, with Turrell Burgess as the autistic voice and me as the parent advocate used the 4 A’s as a framework for understanding autistic masking.

I spoke about it with Dr. Angela Kingdon about this on the Autistic Culture Podcast. I mentioned I have a Master’s in Personality Psychology and said how on the Big Five personality tests, I score average on Factors I (Extraversion) and III (Conscientiousness). On Factor I, I score very highly extraverted on half of the items, and highly introverted on the other half. Similarly, on Factor III, I score very high on half of the conscientiousness items such as paying my bills on time, and very low on the other half, such as letting my car run to empty before filling up with gas.

It was always so frustrating that it would score me as “average” on personality measures that I knew didn’t really explain my personality. Without getting into the differences between state and trait theories, I believe that the neurotype was a confounding variable and would love to see research on this!

So I agree with Dr. Shore about supporting autistic people by accepting the extremes in autistic individuals and work with this fact–especially in schools where I hear so much about negative experiences from my small world of Floortime parents where kids are being expected to comply regardless of the circumstances.

A DIR® Approach

I acknowledged that the “self-advocate world” has been here for years–understanding that PDA is not a pathology–but the slow moving beasts like academia, government, and similar systems are still in the dark ages around this. Dr. Naseef says that people have been lead to believe that PDA is a real thing and it’s not. While it’s real in terms of describing the behaviours that occur, it’s not a real accepted diagnosis in the Diagnostic and Statistical Manual (DSM). It has a conceptual framework, but there’s alternative conceptual frameworks that are neurodiversity-affirming as opposed to pathologizing, he affirms.

Starting where the child is and understanding the child’s intent are standard Floortime principles, Dr. Naseef continues. How do we join with a child who may be resisting a demand that may seem, or is, excessive to them? That is the question. I shared that I talk about this in my Floortime documentary series, We Chose Play, and in the courses I teach. This is the biggest hurdle when parents begin to learn Floortime. It’s more about changing you than changing the child. You need to adapt.

The Double Empathy Problem

It’s so natural for parents to direct and teach the child. From the time they get up to the time they go to bed, we’re asking children to get up, wash up, sit at the table, get dressed, etc. non stop. But what if our child is in monotropic focus on an activity? I can’t count the number of times my mother would yell up the stairs calling my name to come downstairs to eat or leave for school when I would be stuck in various projects I was working on, immersed in them and I would just stay immersed in them rather than come downstairs, as my mother requested.

Dr. Shore says that it’s so easy for anybody to say that the child is ignoring them, not respecting them, spiting them, or being willful. What it requires is understanding Damian Milton’s Double Empathy Problem. So often people talk about autistic people not understanding people’s point of view–we can flip it around, too, Dr. Shore argues.

The Flipside of People Pleasing

I added that PDA is the flipside of the coin to people pleasing, a form of masking, which is common especially in late diagnosed autistic women. Maybe certain girls and expectations for females makes females feel like they have to do what the other person wants, without the other person even having to say it! They go out of their way to do it because they feel like that’s what the other needs.

Dr. Shore used the term “eco-emotica” (a play on echolalia and echopraxia) in his book Beyond the Wall, where an autistic individual strongly feels another person’s emotions a lot more strongly than non-autistic people do. You take the emotion on to yourself and think it’s coming from you, he explains. It’s a bit like we see with young children if the teacher comes in to class in a bad mood and the children pick it up thinking it’s their emotion rather than being able to recognize it in the teacher and ask how they can help.

Individualized Support

I pointed out that while I don’t think my son ever had a PDA profile, when he was younger, he responded well to Floortime: following his lead, joining his interest, being attuned into his emotional intent, and building the circles of communication from there and having fun playful interactions.

As he is in his higher developmental capacities and I’ve tried to find the best people to have the best relationships with him, who respect him, who are neurodiversity-affirming, who really try to provide individualized attention to him and his needs, he is more able to endure demands which are placed on him than when he was younger, and he has a Floortime mom at home if it becomes too much, so he can unwind when he gets home.

Dr. Naseef says that it’s a question of finding a good therapist who will really respect your child as an individual and who will respect the parent’s perspective, working together with others. He says you can find that in various theoretical backgrounds of people. It’s humanistic. What’s most important is the person: the “R” (relationship). When you have people who don’t have any options and absolutely need child care to survive, I shared, you don’t want to chastise people for choosing the only option they have if it’s not ideal. I included this point in my book, based on the suggestion of Dr. Naseef and Dr. Karen Levine.

Of course, I’ll always advocate for a DIR® approach because that’s what I believe in, but in We Chose Play: Raising an Autistic Child to Thrive and Feel Understood, I talk about how most important is to find professionals who really care about your child, want to support them, be there with them, and aren’t going to do harmful things to them like isolating them, punishing them, or making them feel bad for things that are out of their control.

And, I continued, you have good-hearted people wanting to support autistic populations. Who cares what their approach is called as long as they’re truly supporting your child in a neurodiversity-affirming way. They may be at the beginning of their own learning journeys. A bigger problem is that so much of public school is behavioural and compliance-based, and that is a real challenge for so many neurodivergent children who are so misunderstood.

Dr. Shore’s initial research in 2006-07 for his doctoral dissertation was comparing different approaches, including DIR®. He interviewed Dr. Serena Wieder for that part and his goal was, and still is, to move the conversation from trying to prove which approach is the best to which approach meets the child’s profile at this particular time. It’s about looking at each person as an individual, meeting each person where they are at, focusing on the D, I, and R, and working out ways where individuals can live up to their potential and have supports they need to thrive.

Summary

We don’t want to pathologize someone for characteristics, especially when there are sensory experiences going on and their brains are different. We want to understand the reasons for the persistent drive for autonomy rather than put a pathological stamp on them.

That’s the key, Dr. Shore says: being curious about the reasons for the behaviour and understanding what is happening. Through understanding, we can provide better support, he emphasizes. And that’s what it’s all about, Dr. Naseef adds: individualizing support through a caring, loving relationship, thinking about how we set limits effectively and handle meltdowns and other upsets effectively in a way that individuals need.

Thank you to Drs. Naseef and Shore and we’ll look forward to the pending academic article based on their Autism Spectrum News piece. If you found this episode helpful and informative, please consider sharing it on social media.

Until next time, here’s to choosing play and experiencing joy every day!