Pathological Demand Avoidance Syndrome and Autism


Pathological Demand Avoidance Syndrome (PDA) is the term for an obsessional avoidance of the ordinary demands of everyday life. The child with PDA exhibits a level of social understanding and ability that makes them able to be manipulative in their avoidance. Coupled with a capacity for imaginative play, early appreciation was that PDA was a stand alone diagnosis. More recently, however, clinicians recognize it as a feature of autism spectrum disorders.

Children with PDA require a different approach, particularly in the educational environment. The school environment, with its incessant demands and expectations and concomitant system of rewards and punishment, is a minefield of anxiety for the PDA student. Educators need to be less openly demanding and more negotiating, abandoning the tenet of uniformity in dealing with all students. Flexibility is required, as classroom expectations need to be modified according to the child’s given emotional state and situation. Rather than being head-on in their dealings, teachers need to be oblique, avoiding a clash of wills. A relationship of trust and respect between the teacher and student is the cornerstone of success.

Learning about PDA rings like a bell for me personally. My fifteen-year-old son is the perfect embodiment of this condition. His tumultuous educational experiences are a direct product of teachers being unwilling and/or unable to modify their approach to him based upon his extreme anxiety around everyday demands of school life. Almost with out exception, his teachers felt the best course of action was to face him down over work expectations, thinking this would lead to the “extinguishing” of his behaviors. What it lead to was more and more explosive behaviors and the triggering of his dangerous Crohn’s symptoms. As I write this, he is going to high school online because of the failure of yet another school placement.

Counter-intuitive to the training and beliefs of educators and administrators, it’s going to require a lot of work to bring our schools up to speed on PDA. Even the teacher in the psychiatric ward of the hospital where my son was twice confined for his anxiety, left him convulsing on the floor for an hour when he refused to do a math worksheet.

There is real urgency to this problem. Educators need to realize that individualizing their approach to a child with PDA is not a capitulation to that child’s manipulations, but the honoring of their distinct and very real condition.

19 Responses to Pathological Demand Avoidance Syndrome and Autism

  1. Judy Palac says:

    Wow, this describes my 16-year-old to a T, Susan. He was lucky to have teachers, at least on and off, who understood this, till the end of 7th grade, when he was a straight A student and mostly included. We thought he was well on his way to success. In 8th grade, people tried to “extinguish” his behaviors and he eventually was removed from school and charged with 3 counts of assault, all against adults that were really trying to force him to behave. He is now in a special EI school where they do “get” him, but it’s not easy. This relieves me to know there’s others out there like this!

  2. Susan says:

    Isn’t that sad? My son was stabilized and thriving due to a great teacher in middle school, but then he hit high school and all that progress went down the drain under similar circumstances as yours. I’m also comforted that we’re not alone and experts are recognizing this as a real condition.

    Thanks for writing…Susan

  3. Michelle says:

    Wow. How would a dx been obtained…. I have a 7yo aspie with servere skl anxiety due to discrimination. Cld this b the case…

  4. Susan says:

    What’s the nature of the discrimination?

  5. Robin says:

    Thank you for this article; describes my son’s childhood perfectly… one long drawn out torturous conflict with the school system (despite our endless efforts to educate the school staff on how to work with him… sigh). I didn’t know there was a term for this. I knew there had to be others “out there” suffering like my son and our family, but it’s nice to actually hear from you :)

  6. Susan says:

    We are not alone…

  7. Rose Benson says:

    Who knew there was a name for my problem? I’ve been struggling with the inability to meet expectations since I was born–and that was 67 years ago! Being female and having brutal parents, I was literally forced to do things their way. School was easier because I could usually outsmart my teachers, but there were ugly clashes, too. The further I went in school, the harder it became to squeeze myself into academic expectations. I have to do things my way. HAVE TO! I CAN’T do it by rote or on demand because even the attempt makes me sick with frustration and anxiety. I’m disappointed to learn that academia hasn’t changed all that much for people who are unable to conform. After 60+ years shouldn’t something have improved? Maybe they should hire more high-functioning autistic teachers. I recommend it.

  8. susan says:

    Good idea. Schools definitely aren’t keeping pace with our expanding knowledge base.

  9. Dawn says:

    My son is seven and we have been struggling for two years to try and figure out what is going on. He fits the description! He resorts to crawling under tables and hiding to “get away”. He is a smart and sweet boy but “needs to be in control”. I think his teacher is very frustrated and my son can sense that. He wants to trust her but is becoming more leary. Any suggestions?

  10. Susan says:

    Well here’s a book I haven’t read, but it’s a good publisher of autism books:
    http://books.google.com/books/about/Understanding_Pathological_Demand_Avoida.html?id=ylhtn1HavXgC

    There’s lots of info on the web. Let your teacher know that there’s a name for this behavior and encourage her to read up on it.

    My son hid under furniture a lot. AS kids are vibe masters, a teacher’s frustration fuels anxiety, a no win situation. Teachers need to approach your child outside a disciplinary model, and they have to be flexible, letting go of the notion of treating all students equally. Treating our AS kids individually is the only way to be successful with them, and it levels the playing field.

    One thing that helped my son is that when he had something odious to do, one teacher broke the assignment into smaller components, and as he completed each subset of the larger task, he got a reward. He thrived with that system.

    Good luck!

  11. Karyn says:

    I don’t know what to say – I am in tears reading this – I have been battling with doctors, teachers and the world at large for five years to get people to understand my son who has Asperger Syndrome. However, his explosive, violent outbursts which they irritatingly refer to as tantrums, have become a significant factor in our day to day lives and it’s untenable.

    Tonight I have discovered PDA. Tomorrow, every professional in my sphere will be hearing from me. Why does this have to come from me, why hasn’t it been brought TO us after considerable treatment and observation?

    I am so grateful to you for posting this on your site – it’s the first scrap of hope I’ve seen in a long while now.

  12. Susan says:

    Since I wrote this article my son got a new placement w/a teacher and an aide who are never punitive and are warm and supportive. It’s miraculous really, what a difference it’s made. Good luck to you in advocating for your son. Thanks for writing.

  13. Karyn says:

    Well that fell flat – nobody will even discuss it with me as it is not a “recognized” diagnosis in the U.S.. How DOES one obtain the diagnosis here?

  14. Mrs. Solis says:

    I am an educator who is very interested in PDA. I’d like to repeat the question of the last person who posted: How does one get a diagnosis of PDA in the United States? Thanks.

  15. Colleen says:

    So thrilled to read this on a US site.
    Awareness IS growing!
    Everyone with a lightbulb moment should
    check out
    http://www.thepdaresource.com

    Cheers!

  16. Debra says:

    There is a facebook group specifically for people in the US, you can find it listed on the PDA Resource website http://www.pdaresource.com/groups Also if you use LinkedIn there is a PDA specific group and I have noticed there are some professional members from the USA. Ross Greene (based in USA) uses a collaborative and proactive solutions approach which works very well with children who fit a PDA profile, indeed professionals in the UK who are familiar with PDA do recommend his book, The Explosive Child, as a good source of information and strategies. There are some youtube videos of his presentations about his work and you can see these on his website: http://www.livesinthebalance.org/ in addition the PDA society have a forum which has been up and running since for over ten years, there is a lot of infomation and data there from parents/carers, adults with PDA, some professionals. Some areas of the forum are open to general viewing and there are separate areas for parents and professionals (to view these areas and post in these areas of the forum its necessary to complete a membership form. Hope some of this is useful to you/ your visitors!

  17. Debra says:

    sorry the link in the above to the pda resource website will not work its simply http://www.pdaresource.com and then select groups in the top menu

  18. Kathy says:

    I just recently made the connection between my child(ren) and PDA. Looking back, I can see how doctors and teachers were thrown off by this disorder even though I persistently pushed the alert button. I came upon a UK site seeking answers for my 25 year old son, but now see a variation of the same disorder in his 17 year old brother. They present with very different issues. They are different people FIRST, then add the challenges of PDA, and their way of coping is dramatically different. Even my parenting approaches from PDA child to PDA child had to be different. At a quick glance one would assume that one of the brothers is functioning at a higher level, but looking closer (and looking back), I realize the tremendous challenges also posed to the other. As the boys are getting older they are simply excelling in different areas, as well as feeling the setbacks in others.

    I have tremendous empathy for the posters above me who are just embarking on this challenge. It has been my experience that as the disorder goes undiagnosed, stress-produced physical issues complicate diagnosis. Also, the more intelligent the child, the more they fall between the cracks and simply seen or labeled as LAZY. Self-esteem issues (even in the most supportive environment) add further complications as the child realizes (over time) that he is different but no one is addressing the WHYs.

    I felt plagued all these years particularly by my oldest boy’s challenge, but little did I realize that the lack of “autism” diagnosis actually may have helped. (Time will tell)

    Because I allowed him the extra flexibility and space at home to decompress, he learned to not be disruptive in social settings. This provided him a mainstream education. By the time educators started questioning what is different about him, he was almost graduating from high school. To get him through required schooling I shared with teachers my findings that he did well under the care of supportive adults, but drastically regressed otherwise. PDA kids truly operate as if they were ADULTS. If you even see them as other than that, you are already starting from a point of disadvantage.

    The older graduated from college with a four year degree and is now looking for the right work environment that he works best in… after having worked in two not-so-suited environments. The younger boy is about to finish high school.

    The picture is not as rosy though, as this sounds, as this is a true disability. My older son has a lot of physical issues brought on by stress. Since he is yet undiagnosed, the world expects him to operate as his mainstream counterparts. HE expect to operate as his mainstream counterparts as well. That may even be of a greater stress to him than the expectations of others.

    The struggle continues, I am afraid. We need more of the Rose Benson’s to come forward, so that we may learn WHAT TO EXPECT IN YEARS TO COME as well as THAT THEIR STRUGGLE WILL NOT BE IN VAIN.

    What I really like to see is the ability for people with this shared experience to tap into some kind of support system. Frankly, I am not certain that I want this to be through Facebook. As much as PDA is now associated and linked with Autism, I believe this disorder is differentiating itself enough that it could use even a different label than PDA. When I told my older son about my findings, I told him to ignore the labels, as I don’t feel comfortable with it. Demand Avoidance does not correctly depict the feeling of distress that is brought on by a task that people with PDA try to avoid. However, at least we have found a reason for the procrastination.

    Don’t ever give up on these kids. They will amaze you!

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