PDA: The Demand Avoidant Profile of Autism
Synopsis: Autism and PDA. It's not what you think! This Autism Awareness Month, help spread awareness about PDA, the Demand Avoidant Profile of Autism. We know that autism is dimensional - it involves a complex and overlapping pattern of strengths, differences, and challenges that present differently from one individual to another. In some ways, there are practically as many expressions of autism as there are autistic people. However, there are also some clusters of traits - formally called presentations, or profiles - that we see over and over again. One of those that we are just beginning to understand is Pathological Demand Avoidance Syndrome (PDA).
What do you think of when you hear PDA? If you thought "Public Displays of Affection" - well, you're not wrong - but that's definitely not what we mean when we talk about PDA in the context of autism!
Although the Pathological Demand Avoidance Syndrome (PDA) has become more and more widely understood in the UK, this clinical profile of autism is just at the precipice of being "discovered" by American educators, psychologists, therapists, and families. That's good (if belated) news for American individuals who may be impacted by it.
"Our understanding of autism is still evolving, especially in the U.S.," says Diane Gould, a Chicago social worker and founder of PDA North America, a new initiative that is working to bridge the PDA understanding gap on this side of the Atlantic.
As the UK-based PDA Society, from which PDA North America draws inspiration, explains on their website:
"We know that autism is dimensional - it involves a complex and overlapping pattern of strengths, differences, and challenges that present differently from one individual to another. In some ways, there are practically as many expressions of autism as there are autistic people. However, there are also some clusters of traits - formally called presentations, or profiles - that we see over and over again. One of those that we are just beginning to understand is PDA."
Unlike some of the more widely known autism profiles, PDA can sometimes present in a way that is quite different from what people think autism 'is supposed to look like'. This can lead to misdiagnosis or lack of a diagnosis altogether - especially in autistic women and girls, who are classically under diagnosed.
Unfortunately, this misdiagnosis can prevent people with the PDA profile of autism from accessing resources and support that could otherwise be life-changing for them and their families.
"Strategies that are suggested for autistic children and adults on the whole not only don't work for PDAers, but make things worse," says Gould. "That is why it is so important for Americans to become aware of PDA."
"All research points to early identification and tailored support being the best predictor of positive long-term outcomes," adds the PDA Society website. "Recognizing these profiles helps identify the approaches or support that will be most helpful for each individual."
So, what does the PDA profile of autism tend to look like? A PDA profile of autism means that individuals share autistic characteristics:
- "Persistent difficulties with social communication and social interaction," and, "restricted and repetitive patterns of behavior, activities or interests," present since early childhood to the extent that these, "limit and impair everyday functioning," - (according to the Diagnostic and Statistical Manual Fifth Edition, DSM-5)
- Often including a different sensory experience relating to sight, smell, taste, touch, hearing, vestibular, proprioception and interoception.
- Have a need for control which is anxiety related.
- Tend to use approaches that are 'social in nature' to avoid demands.
- Present with many of the 'key features' of PDA rather than just one or two.
- Tend not to respond to conventional parenting, teaching, or support approaches.
- Are driven to avoid everyday demands and expectations (including things that they want to do or enjoy) to an extreme extent.
"Learning to watch for and recognize these characteristics in children and young adults, or really folks of any age, is critical to identifying people who meet the PDA profile and connecting them with the correct types of support," says Gould. They need genuine understanding and a collaborative approach.
Even without a diagnosis, there are many useful strategies that families and professionals can apply.
Truly being able to take advantage of these strategies, of course, also depends on a new cohort of American professionals learning more about PDA and integrating best practices into their treatment and educational models.
Fortunately, PDA North America is here to help - offering annual conferences, ongoing webinars and parent support, consultation, as well as custom group trainings. For more information, visit pdanorthamerica.com or contact firstname.lastname@example.org
This quality-reviewed publication pertaining to our Autism Information section was selected for circulation by the editors of Disabled World due to its likely interest to our disability community readers. Though the content may have been edited for style, clarity, or length, the article "PDA: The Demand Avoidant Profile of Autism" was originally written by PDA North America, and submitted for publishing on 2022/04/08. Should you require further information or clarification, PDA North America can be contacted at pdanorthamerica.com. Disabled World makes no warranties or representations in connection therewith.
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