Updated January 3rd, 2016. This post will be updated on an on-going basis
I have written this blog specifically to educate, advocate and provide awareness for an unknown syndrome in Australia, called Pathological Demand Avoidance (PDA) Syndrome. Many children are misdiagnosed with other conditions and/or parents are sent on parenting courses that are ineffective or make things worse for these types of children.
Presently, Pathological Demand Avoidance (PDA) Syndrome is not recognized in Australia and is not recognized by the DSM5. It may be confused with intermittent explosive disorder, oppositional defiant disorder and other disorders or conditions. It is extremely challenging to find support or assistance for PDA in Australia. Many professionals are unaware of PDA. However, the National Autistic Society in the UK has recognized PDA as a form of Autism (http://www.autism.org.uk/about/what-is/pda.aspx#). This is a most progressive and positive move.
Over my career, I have worked with some of the most behaviorally and emotionally disturbed children (and adults). I have worked with a number of children and adults (in two countries) who have been described by their family members, school officials, educational consultants, as “naughty”, “Jekyll and Hyde”, “bi-polar”, “schizophrenic”,”possessed” or even “a devil’s child”. I have worked in private special needs school, hospital psychiatric, outpatient and inpatient and private practice settings. In one professional development session I attended, a psychiatrist suggested “these children needed to be thrown out the window on the drive by past school” (in order to help them overcome their anxiety). I have seen and heard it it all, and I can tell you, these children do not need to be thrown out windows and are not possessed by any “devil”, although they can and do behave in some very scary ways, at times.
Presently Pathological Demand Avoidance (PDA) Syndrome is not recognized in Australia and is not recognized by the DSM5. It may be confused with intermittent explosive disorder, oppositional defiant disorder and other disorders or conditions. It is extremely challenging to find support or assistance for PDA in Australia. Many professionals are unaware of PDA. However, the National Autistic Society in the UK has recognized PDA as a form of Autism (http://www.autism.org.uk/about/what-is/pda.aspx#). This is a most progressive and positive move.
Pathological Demand Avoidance Syndrome (PDA) is a term by Elizabeth Newson, used to describe children and adults who have an extreme need for control that is led by high levels of anxiety. They have difficulty coping and complying with day to day activities and their behaviors are out of proportion to the task being requested of them (for example, a violent act over being ask to pick up a toy). They have a lack of sense of a social hierarchy and have been described by others as socially manipulative and having anger management difficulties, which may include growling, grunting, spitting, hissing, violence and/or swearing. They may have a “look” in their eyes that is indescribable and/or scary to the parents(S) and family members.
The word ‘pathological’ is used to describe the avoidance as impairing their ability to function. Avoidance is used in many ways and the strategies are manipulative in a social way to avoid a demand. I have seen children use distraction, a multitude of excuses, stories and/or lies, negotiation and arguing, screaming and biting, hostility, attacking other people and/or becoming violent, running away, hiding, engaging in highly embarrassing activities in public, withdrawing into a fantasy world and acting like animals, just to name a few strategies.
Socially, children with PDA appear to have better or more social skills, however they do not have full empathy. I have observed them use empathy to control and/or manipulate others or a situation, but there is a stark lack of emotion involved. They may use their intellect to manipulate others.
At times, these children can appear as though they are just like any other child and at other times, they can be extremely challenging. These types of children are extremely moody, highly anxious, love role play and pretending, may have sensory sensitivities, tend be be bossy and domineering, and may not realize that they are a child, in the true sense of a little person. Some believe they are animals, rather than human. If you believe your child has PDA, typical parenting or even Autism parenting strategies will NOT usually work.
If you think your child has PDA or traits of PDA please read the following books. I am also available to consult with by emailing me at tania@aspiengirl.com
There are specific assessment tools to assist with diagnosing PDA.
Recommended reading
Duncan M, Healy Z, Fidler R & Christie P (2011). Understanding Pathological Demand Avoidance Syndrome in children. London: Jessica Kingsley Publishers.
Fidler R, Christie P (2015). Can I tell you about Pathological Demand Avoidance Syndrome? London: Jessica Kingsley Publishers.
I had the pleasure of attending one of Dr. Greene’s conferences in North America and I cannot recommend his work enough.
Greene, Ross W. (2014). rec. 5th edition. The Explosive Child: A New Approach for Understanding and Parenting Easily Frustrated, Chronically Inflexible Children
Greene, Ross W. (2014). Lost at School: Why Our Kids with Behavioral Challenges are Falling Through the Cracks and How We Can Help Them
Greene, Ross W., & J. Stuart Ablon (2005). Treating Explosive Kids: The Collaborative Problem-Solving Approach.
Sherwin J. A. (2015). My daughter is not naughty. London: Jessica Kingsley Publishers.
Recommended Resources
Dr. Greenes’ Centre for Collaborative Problem Solving
http://www.ccps.info/
Streaming Video or DVD: Explosive, Noncompliant, Disruptive Aggressive Kids at http://www.cpsconnection.com/store
You don’t have to wait for Dr. Greene to be speaking in your area to watch his one-day overview of the CPS model; you can watch streaming video or download MP4 video or MP3 audio formats.
Recommended Australian Resources
http://www.thepdaresource.com/pages/groups.html
If you know of a professional in Australia who works with PDA, please let me know and I will add them to the ‘PDA Professionals list’, by emailing me at tania@aspiengirl.com
Look for my new book on PDA and females, coming 2016
Copyright, Tania Marshall, 2014-2016
Has the Aspien Woman book been published yet? I paid for it over a year ago. I’ve emailed 3 times. Please write me or post on the blog the ETA for this book.
Hi Maria, can you please email me at tania@aspiengirl.com? I have not received any emails from you
Hi Maria,
I ordered mine a year ago & received it just before Christmas. Fabulous book, worth the wait.
Cheers, Leah
(This post may come up twice)
Thank you Leah and I’m pleased to hear that so helpful resource the book is doing very well😃🙏
Maria, it was sent out in September. Can you please email us at tania@aspiengirl.com
My daughter has PDA for sure, reading about PDA was like a lightbulb turning on. Everything about her that we just couldn’t get our heads around was all there described so perfectly. I tried contacting Autism SA to have her assessed but they don’t recognise it and by their statements on DSM5 I was concerned that they wouldn’t even recognise that she has ASD. I enquired with Headstart here in SA and they said they have children with PDA so I am hoping they will be able to help. She’s already been given a provisional diagnosis of ASD and her dual assessment starts next week then she has appointments set up for OT aswell as a psychologist who is starting with working on her anxiety. I’ll let you know if they are good for her PDA. I really look forward to your book. I have been reading a lot of your blog lately, thank you for all that you do.
Thank you for your kind words and you’re very welcome. I’m glad you found someone to help you and please do let me know if you’d like me to add them to my list. Best wishes. Tania
I just wanted to update that my daughter is now officially diagnosed with ASD however nothing was added to it such as PDA. This was the closest i got:
“D. Symptoms together limit and impair everyday functioning: Maya exhibits fear and anxiety, related to a social communication disorder, which prevents her from everyday experiences. She is very rigid in the way that she insists others interact with her.”
It was interesting reading the observations from the clinical psychologist that assessed her whilst we spoke to the speech pathologist. The observations very clearly described a PDA child. She mentioned that my daughter kept everything on her terms and continually steered the conversation back to her interests. It looked like she tried to avoid the IQ test as much as she could especially once they got to pen and paper tasks such as coding with her quickly declaring her hand is sore. I think she was only meant to do the IQ test in the first session then see the speechie in the second but the IQ test, took up both sessions. Needless to say she didn’t score very well at all. So now which came first the chicken or the egg. I’m left to figure that all out.
To be honest I am surprised she was straight to her avoidant behaviours with the assessor and also her OT etc
At the end of it all I really don’t feel I have any more direction on what I need to do and my daughter seems to be determined that shes fixed her fear of the weather (she hasn’t) and its too late for the OT and Psychologist. I think we’ve used up the 10 appointments now and I don’t feel any wiser! The report recommended links to sites that deal with social skills and that was it. We had already started the OT and psychologist.
I have to educate her because she can’t cope in school and no suggestions have been offered but even if I had a PDA diagnosis for her, I’m not sure it will matter because its so unknown!
I’ve bought a bunch of kindle books you recommended including yours and now just part way through The Explosive Child. I wish there was more awareness on how to educate a child that doesn’t want to be “taught”. Having said that she seems to teach herself what she feels she needs fine.
Thank you Tania. This is a very good description of the condition. If only professionals like yourself would share knowledge and be willing to learn. My daughter has PDA. It is a challenge but with insight and a lot of understanding these children can overcome difficulties. It is an on going battle to get recognition and support. What families tend to get is judgement and ridicule. This is not productive. With the correct strategies a little respite now and again and a lot of acceptance these children stop being demons and can be the loving, thoughtful, caring beings they really are xx
You’re very welcome and I’m glad my resources are helpful. Best wishes
Think I will have to order your new book, will I find it on Amazon? I have 3 children, 2 girls – 1 diagnosed ASD/Aspergers, the youngest we are in the process of assessment at the moment. I have just sat down to read having survived a v challenging bedtime with her – all the avoidance tactics she could find, scratching, kicking, biting, pushing, running, hiding, becoming a panda (who doesn’t need bed), a baby (who doesn’t understand), needing Daddy, hating me, ….etc etc… V reassuring to read your post now it’s finally quiet here (for now) – thank you!
Hi and thanks for your message I have two books that are available the first one is called I am Aspiengirl and the second one is called I am Aspienwoman. I am currently working on my third book, Aspienpowers. You’re welcome and I hope my resources are helpful
Very interesting post, Tania. The lack of recognition of PDA and its absence from the DSM5 are problems in America too. As part of the effort to combat this, PDA Matters has been set up in the US state of Connecticut. As we say on the site:
It would be great to have some links and collaboration with Australia. How might we take this forward?
Sounds like a great idea. I need to think about it. What would it involve?
Bob, here in the UK we have the wonderful PDA Society. Are you aware of them and do you collaborate with them at all? In 2015 we had a fabulous conference with workshops. It was a fantastic way to share information and experiences. I was educated and very moved by it.
I would like to take this forward too Bob
OK, Tania. I’ll draw this to the attention of my son Guy, founder of PDA Matters. I’m confident he’ll respond when he can.
Bob
Great and thank you. I have so many people looking for professionals to work with their PDA children
Reblogged this on skywalker65.
A family of seven, been trying to figure out these folk for a lifetime…it plays absolute havoc with other types of autism,,,the control behaviour once initiated in my family is a lifelong ambition.
This is where callous conduct disorder meets psychopathy meets autism and its “sufferers” see it in their best interests to not acknowledge this condition…
in adulthood its the dark triad, now tetrad spectrum.
The demand socially is that we take autism into account as a social reality.
The pathological avoidance of demand and lack of empathy this intiates in arguably all society ?
benefitting none but control obsessed fearmongers and those who see control out of fear.
The pathological diversion descrivbed here is the pathological diversion of the machiavellian psychopath…even if the sadism compnetn is not present their behaviour if not acknowledged is totally callous , i have to speak from experience and in an environemnt where the most manipualtive autist rules supreme, the tactics of diverting from and never dealing with emotional realities is a very easy route for the the autists who are exposed to it… the mimicry and echolalia get played in almost a hypnotic linguistic manouvering game.
As a child who didnt really have problems fitting in/? they sure made me a few,,,sabotaging attmepts at forming bonds outside the family , playing perceptive trics and then blaming when you discovered their motives,,,which was always control…collectively seeing it over one another,,,playing off neuroses,,,out and out bullying…show a chink of emotionality…get utterly derided and destroyed for it.
miserable gits…
but all someone had to do was point it out…id have been a lot better for it,,,
so would some oif thgem,,,others?
well…
what was that thing about the bus?
Do you have information about PDA and resources in the U.S.? We are desperate.
There is a PDA USA Facebook group or page
There is also the US-based site PDA Matters.
http://www.parliament.scot/GettingInvolved/Petitions/PE01625
Petition supported by Phil Christie , PDA Society Trustees and many more. If Scotland recognise PDA it will then set the precedent for the UK and the rest of the World.
Please sign and comment. Anyone in the World can sign. Please spread the word .
Thank you @patricia
I welcome any promotion of awareness of PDA, but why do these articles always refet to “children” or “the child” with PDA. My 20 year old son has PDA, he still has all the features described by Elizabeth Newsom, and as an adult these are much more of a disability. We need to make society aware that people don’t grow out iof autistic spectrum disorders.
Hi, Linda. Could you email me, please? I would like to ask you about similar problems. djagminiene@gmail.com
Hi Daina, due to my heavy caseload I can only offer a fee based consultations in the clinic or online if you’re interested?
Wow, this is my daughter to a tea!!!!
I’d never heard of this condition before, I’m sure my daughter has it.
Do you know if Australia has recognised it yet?
Thank you for linking my article
I think my husband may suffer with this he’s 56 how would I know?
Hi Helen thank you for your question, the only way you would know is for him to go through a comprehensive diagnostic assessment with a trained and experienced clinician. There are hundreds of thousands of adults out there in the world known as the last generations who did not receive a diagnosis as a child. They remain undiagnosed
Thank you. I am a nanny for a family with a young girl who fits all the factors described in your entry here. Nothing has worked. Her mother just found this information about PDA over the weekend and told me about it today. I’m going to order a couple of the books you recommended. Thank you again.
Dear Tania, Thank you for your post. I have three girls, two are diagnosed with Autism (we’ve been told would have been Asperger’s – but in the UK they don’t diagnose any specific conditions just ASD) and we’re going through the process of getting my youngest diagnosed at the moment. My middle daughter has PDA – again not diagnosed as the Paediatrician said that they won’t specify this in my part of the UK. I know your I am an Aspiengirl book was published but it doesn’t say PDA anymore – was it just changed to Autistic Spectrum Disorder – or is there another book I should be looking out for which is more about PDA? Many thanks.