A blog that explores the concept of PDA as well as offering an insight into life with a child with PDA

PDA Information Cards

I have recently being creating ‘PDA Information Cards’ which I hope help to answer some of the more frequently asked questions and queries about PDA. I have decided to dedicate a page to these cards so that they are easily accessible and I shall regularly update this page with any new information cards. These cards are available in a web format so that they can easily be copied and shared via social media and also in a PDA format which can be printed off in A4.

My sources for this information are
-‘Understanding Pathological Demand Avoidance In Children’ Phil Christie, Margo Duncan, Ruth Fiddler and Zara Healy, Jessica Kingley Publishers 2011
-Attending, two, day long conferences on PDA and listening to well respected speakers including the research that is currently being conducted at Kings College London by Liz O’nions, Professor Francesca Happe et al
– Substantial reading on all areas of ASD
-Twenty three years of hands on experience of living with ASD on a daily basis including ten years of living with PDA.
-Research Paper Published, Pathological Demand Avoidance:  Exploring the behavioural profile http://aut.sagepub.com/content/early/2013/10/07/1362361313481861.abstract
-Research Paper Published, Development of the ‘Extreme Demand Avoidance Questionnaire’http://onlinelibrary.wiley.com/doi/10.1111/jcpp.12149/abstract

Card One:  The differences and Comparisons between PDA and Oppositional Defiance Disorder (ODD) Version 1
ODDvPDA1
To download this as a PDF please click on the link below
ODDvPDA1

Card Two: The differences and Comparisons between PDA and Oppositional Defiance Disorder (ODD) Version 2
ODDvPDA2
To download this as a PDF please click on the link below
ODDvPDA2

Card Three: The Differences and Comparisons between PDA and Typical ASD Version 1
ASDvPDA1
To download this as a PDF please click on the link below
ASDvPDA1

Card Four: The Difference and Comparisons between PDA and Typical ASD Version 2
ASDvPDA2
To download this as a PDF please click on the link below
ASDvPDA2

Card Five: The differences between PDA and Reactive Attachment Disorder (RAD)
RADvPDA
To download this as a PDF please click on the link below
RADvPDA

Card Six:  Is it Possible to Have a Dual Diagnosis of Autism and PDA or Asperger’s and PDA
DualDiagnosis
To download this as a PDF please click on the link below
DualDiagnosis

Card Seven: The Difficulties That Lie Behind the PDA Diagnostic Criteria
pdacriteriaR
To download this as a PDF please click on the link below
pdacriteriaR

Card Eight: The Complexities Of PDA
PDAcomplexityR
To download this card as a PDF please click on the following link
PDAcomplexityR

Card Nine: A Guide for Professionals When You Are Addressing Me
PDAhowtotalktome
To download this card as a PDF please click on the following link
PDAhowtotalktome

Card Ten:  Hidden Disability
hiddendisabilityR
To download this card as a PDF please click on the link below
hiddendisabilityR

Card Eleven: Managing Meltdowns
meltdownsR
To download this card as a PDF please click on the following link
meltdownsR

Card Twelve:  Is PDA a Lifelong Condition
adultpdaR
To download this card as a PDF please click on the following link
adultpdaR

Card Thirteen: What Does an Individual With PDA View as a Demand
PdaDemandsV3
To download this card as a PDF please click on the following link
PdaDemandsV3

Card Fourteen: PDA alert card
PDAalertcardA4
To download this card as a PDF please click on the following link
PDAalertcardA4

Card Fifteen: Mollie’s Personal Card
MollieInfoCard
To download this card as a PDF please click on the following link
MollieCard

Card Sixteen:  How PDA Affects Mollie Information Sheet (This is a guide that can be personalised for your own child)
my-pda-clear
To download this card as a PDF please click on the below link
How PDA affects Mollie

Card Seventeen: PDA Described
PDA
To download this card as a PDF please click on the link below
PDA

Card Eighteen: The difficulties behind Mollie’s behaviours
MollieBehindBehaviours
To download this card as a pdf please click on the link below
MollieBehindBehaviours

Card Nineteen: (Part one) A four page information sheet on the PDA strategies that we find successful for Mollie and how we used them.
This is only available as a PDF due to the size of the document.  To download this information please click on the link below.
PDAstrategiesR

Card Twenty: PDA Sign post for professionals who refuse to even entertain the idea of PDA
PDAsignpost
To download this card as a pdf please click on the link below
PDAsignpost

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Comments on: "PDA Information Cards" (16)

  1. […] some very good PDA information cards which she invites you to use. You can see them all by visiting UnderstandingPDA, where you can also download and print […]

  2. […] has also written PDA information cards to share, to help to raise […]

  3. […] PDA Awareness Card by Jane Sherwin […]

  4. sonja buckle said:

    Just read mollies card to my 8 year old ,( suspected pda ) she cried! , happy tears, because someone is like her, she said ” that’s how I feel ” she feels different and scared cos the feelings she can’t control won’t go away …thank you Mollie , you have really helped Thalia x

    • I am so pleased that Mollie’s card has helped Thalia. Understanding oneself and self awareness is the most important part of our children’s journey in happiness and emotional well being. It is ok to be different and this is what our kids need to understand and that they are not alone. There are others like them out there which can possibly end the terrible feeling of isolation that they must feel xxxx

  5. So interesting reading this information. Here is a good website about Oppositional Defiance Disorder, which gives a list:

    http://www.aacap.org/aacap/Families_and_Youth/Facts_for_Families/Facts_for_Families_Pages/Children_With_Oppositional_Defiant_Disorder_72.aspx

    “All children are oppositional from time to time, particularly when tired, hungry, stressed or upset. They may argue, talk back, disobey, and defy parents, teachers, and other adults. Oppositional behavior is often a normal part of development for two to three year olds and early adolescents. However, openly uncooperative and hostile behavior becomes a serious concern when it is so frequent and consistent that it stands out when compared with other children of the same age and developmental level and when it affects the child’s social, family and academic life.

    In children with Oppositional Defiant Disorder (ODD), there is an ongoing pattern of uncooperative, defiant, and hostile behavior toward authority figures that seriously interferes with the youngster’s day to day functioning. Symptoms of ODD may include:

    •Frequent temper tantrums
    •Excessive arguing with adults
    •Often questioning rules
    •Active defiance and refusal to comply with adult requests and rules
    •Deliberate attempts to annoy or upset people
    •Blaming others for his or her mistakes or misbehavior
    •Often being touchy or easily annoyed by others
    •Frequent anger and resentment
    •Mean and hateful talking when upset
    •Spiteful attitude and revenge seeking”

    What you said on the card about the differences between ODD and PDA, the first five bullet-points easily apply with my 9yo who has HFA and although not diagnosed with ODD, clearly has it. So she also has all those difficulties listed in (1) but with the defiance and resistance of ODD so it appears to fit her too. She resists doing so many things she’s told, tries delaying tactics, makes excuses, gets angry, says she’s busy, says she’s too tired etc. She wants total control. At school she is far less ill-behaved, but the staff have still found her defiant and resistant to things. Like many on the spectrum, she feels children should have the same rights as an adult, (ASC children will sometimes call out in class when they are not meant to for instance) and will apply logic to what she thinks she should have that disregards the fact that she is a child and has to do as she is told. Even when she has previously complained about wanting something done at a certain time, when she is thereafter told to do that thing by that time, she will complain and resist. Children with ASC have public meltdowns and having ODD the additional defiance and resistance, so (5) also fits there. The last point, my daughter’s resistance can be so great that she also will resist despite the offer of rewards, and all previous rewards systems have failed with her.

    So it’s interesting how much an ASC child with ODD will fit the profile of a child with PDA. I know my daughter definitely has HFA and not PDA because she has all the literalness and difficulty with humour and fits all the other traits of HFA, she failed the ice-cream test at her assessment also. But the last 6 of the above bullet-points definitely fit her really well, I guess they aren’t features in PDA. She also has extreme anxiety. What is interesting, is the NAS page on PDA:

    http://www.autism.org.uk/about-autism/related-conditions/pda-pathological-demand-avoidance-syndrome.aspx

    The vast majority of the description seems to fit my daughter: passive baby, language delay with fast catch up (in her case it was loss of language), loves role play, highly anxious (which makes her need to control worse), clumsiness (although she has hypermobility which causes a lot of it, she has proprioception and vestibular problems), this really fits her:

    “As a child, their avoidance of those making demands on them knows no boundaries and usually includes a level of social manipulation. Strategies range from simple refusal, distraction, giving excuses, delaying, arguing, suggesting alternatives and withdrawing into fantasy. They may also resist by becoming physically incapacitated (often accompanied by an explanation such as “my legs don’t work” or “my hands are made of lava”).”

    But like I say, she most definitely is HFA (pretty classic) and you can’t be both PDA and HFA as they are both separate ASC diagnoses. She also gets obsessed with people (in her case it’s usually characters from cartoons or films) which is another PDA sign. This also fits her:

    “Sometimes a child with PDA can appear very anxious at home but remain relatively passive at school (a learnt coping strategy).”

    I do wonder whether ODD can only exist with ASC, and whether children without an ASC diagnosis who get diagnosed ODD, have just had their ASC missed or overshadowed by their ODD diagnosis because it brings the more obvious behaviour. If this is the case, I think there would need to be investigation as to whether PDA is in fact ODD co-morbid to ASC, because with ASC being a spectrum, and not everyone has the same blend of traits, it would explain a lot. So if someone was a passive autistic, but with very noticeable ODD, they might get diagnosed as PDA. Just some food for thought, because the striking similarities between ASC + ODD and PDA. Would be interested in your thoughts.

    • My daughters original diagnosis was Asperger’s and so she has enough ASC features to warrant that diagnosis. However she is atypical in her profile because she does have good imagination, eye contact and better social skills then you would expect to see. This could be explained by the female profile because females on the spectrum do present differently than males. However the complex and challenging behaviour is not something that is typically seen in females with Asperger’s. She is explosive, extremely violent when younger, tantrums would last for hours, the whole house would be trashed, she needs to be in complete control and avoids all demands to a pathological level including suggestions to do things that she enjoys. Rewards make her worse, consequences make her worse and strategies recommended for individuals with Asperger’s make her worse. This could be explained by a co morbid condition of ODD. However unlike individuals with ODD she does not respond to reward based incentives, she has behaviour that are not consistent with individuals with ODD e.g. seeing herself as an adult, behaving in ways with peers that would be infantile and so on. So she has the atypical features of ASC, the behavioural features of an individual with ODD but she also has unique features which are not seen in either of those two groups which is the pathological avoidance of all daily demands, including pleasurable demands regardless of personal consequence. Individuals with PDA also become highly frustrated because they even avoid doing things that they want to do, they even avoid their own demands. As far as I am concerned my daughter fits the PDA subgroup and I do feel that the unique cluster of symptoms cannot be explained by ASC + ODD and more importantly the only strategies that have worked for us are the PDA strategies. No doubt the debate will continue to rage on but this information is becoming more and more validated by recent and on going research. The NAS information will shortly be updated to reflect recent developments. Having ASC features is a requirement for a PDA diagnosis, without them an individual would simply be deemed to have ODD. Therefore taking things literally and having difficulty with humour would not rule out PDA. From what you have described about your daughter I think that she sounds, on paper, like she could be PDA. However only a qualified and experienced professional could accurately determine this. If ABA fails or makes her worse then it may be worth exploring the possibility just in case the PDA strategies are more successful. I hope that this helps to cover the questions in your several replies to me. If you want to research more there is a wealth of information on line and there are indepth published research paper which studies the similarities, differences and unique features of PDA in comparison to typical ASC and ODD. The results of that study was that PDA could not be accurately described or fully explained by a dual diagnosis of ASC & ODD. It may be a good idea for you to attend one of the annual PDA conferences. The next one will be in Cardiff in Nov this year. The conferences are full day conferences and the speakers cover all of the questions that you are posing. Liz O’Nions and F Happe often speak about their research and the differences between PDA and ODD. Judy Gould often presents a speech about girls on the spectrum, how they differ from the male profile and how they differ form the PDA cluster of symptoms. Everything that you are enquiring about is answered in various places on the internet but at the conference it is all answered in one go by real top notch experts in this field and you can bounce questions back at them xxx

  6. Addendum (sorry for the verbosity!) to pose a question. Could not the better eye contact and superficially better socialising skills etc. be accounted for in autistic females because we are better at mimicking and present differently to autistic males? I have written a couple of relevant blog posts you might be interested in reading:

    http://planetautismblog.wordpress.com/2014/04/29/females-with-autism-the-tragedy-of-ignorance/

    http://planetautismblog.wordpress.com/2014/04/20/professionals-not-understanding-autistic-presentations-masking/

    Apparently in ASC females, different parts of the brain are affected than in males.

    Females are naturally more verbal than males, and societal pressures on ASC females mean we adapt better than ASC males, we can intellectually compensate for a lot.

    I just wondered whether this could explain that part of the PDA profile, bearing in mind my previous post about how similar ASC+ODD and PDA are.

  7. What would be really good is if they could do brain scans to find the pattern for all the ASC diagnoses to see if there are distinct differences to allow correct categorisation. Clinical diagnosis isn’t an exact science. I had a qEEG last year, and my Asperger’s patterns showed up, as well as some ADHD traits. I have long suspected that my daughter might have ADD/ADHD as well, and that’s another heritable one. Thanks for all the info, I was talking to a friend about it today, because her eldest child has a DX of AS but she suspects he might be PDA. It’s really important that diagnosticians get it right, because as you say, strategies need tailoring to the child’s individual difficulties, so ASC DX could be too indistinct a label for some children.

    • Oh a brain scan would just be heaven wouldn’t it. My husband has Aspeger’s, ODD and has recently being told that he fits ADHD. My son has quite a classic presentation of Asperger’s but with the correct support it is now barely noticeable on the surface. Then there is Mollie who is diagnosed with PDA. So as in your house we have a real mixed bag going on here. The ENC are wonderful at diagnosing because the have direct experience with and diagnose Autism, Asperger Syndrome, PDA and complex individuals who may have a cross over profile but not fit neatly into any. I have just written another post, inspired by your questions and queries which brings all of the current professional info together in one document. Of course life is all about opinions and individual interpretations too which I understand and accept. The post may be helpful to your friend.

  8. Thanks for allowing me to think out loud in your comments. This is a really useful discussion. My eldest is diagnosed as PDD Other (ICD10 not the DSM PDD NOS) which is not the correct diagnosis as she has AS. She also has a lot of OCD, so yeah we are a very neuro-diverse bunch here too. I said to my friend I would send her the link to your blog.

    What’s really challenging having a child with PDA or ODD, is that it’s hard enough parenting an ASC child (I was a very passive subtype as a child so I’m not used to all the massive meltdowns!) but the judgemental looks and comments the public can give, and you know they think your child is just naughty and you just don’t control them. My youngest (who is virtually the exact same age as your daughter, 9.8yo) was having a meltdown outside once and an old lady said to her “you’re a nice girl aren’t you!” When we were driving home afterwards (with her still melting down) she said to me in a confused voice what this old lady had said, because clearly she realised she wasn’t doing anything nice at all. I had to explain that she had been being sarcastic!

    • Your more than welcome Planet Autism. Mollie is nearly eleven now and life has become far easier in many ways but still challenging in so many other. Yes I remember the days only to well of public meltdowns and the judgmental stares. With the correct environment we no longer experience the huge meltdowns but Mollie is a virtual recluse and didn’t leave the home at all for a period of about a year. Exposure to the outside world had left her traumatised but we are slowly healing the damage. I have learnt so much in the past few years and we have had to completely adapt our way of life to a very unorthodox existence. It is lonely and isolating but it makes life with Mollie easier and calmer. We do have periods now where she ventures out but this is always followed by a long period of retreat back into the home. Good luck in your journey, plain sailing is obviously not a journey that life had in store for either of us xx

  9. Take heart from knowing that at least for Mollie, she probably doesn’t feel isolated. At risk of sounding like I’m banging my own drum, this might give another perspective on it: http://planetautismblog.wordpress.com/2014/06/19/the-square-peg-into-a-round-hole-mentality-and-its-value-to-autistics/

    I know it’s likely isolating for you, but sometimes that can be more because you worry about your child being isolated. If you take a step back, you realise that you are judging the situation from NT perspectives, as you know, the world of autism is very atypical and what might be deemed ‘right’ or ‘normal’ for an NT child to have access to or to do, is often not right for an ASC child. It’s that thing of throwing out the rule book.

    I understand your daughter’s need for quiet time following excursions outside. It does that to me too. It’s like needing a rest after physical activity, your brain needs sorting out and organising, down-time to process and zoning out time to take your brain out of gear to recover. If you try to do too much socially, it all unravels. People on the spectrum find their own level of what they can manage, and exposure doesn’t really make any difference. As a child I went to mainstream school, autism was something that was rare for people to have heard of, letalone Asperger’s, and I therefore had no diagnosis or reasonable adjustments or special help with anything. I was forced to do everything everyone else did. it didn’t make me love socialising, it didn’t make me tolerate it more and it didn’t make me more socially skilled. All it did was enable me to mask and mimic, whilst still feeling alien and now, I want to socialise even less.

    Anyway, I’ll stop taking your time up on your blog, thanks for chatting and best of luck!

  10. natalie Menagh said:

    These cards are fantastic. I was looking for something to give out at my PDA fundraising day later this month. I am also reading your fabulous book. Thank you for everything you are doing xx

    • You are more than welcome Natalie and I am so pleased that you are finding some of my work useful and hopefully informative. The very best of luck with your fundraising day I hope that it goes really well.

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