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

This post has been primarily written to help parents to decide if they think that their child may fit the profile for PDA by sharing with you the screening questionnaire devised for research purposes completed with my daughters profile.  Hopefully this may also be of help to those professionals who do have an active interest in PDA and who are prepared to think out of the box rather than to follow the rest of the professional sheep until they are spoon fed permission to actually take PDA as a serious condition.

As we all painfully know PDA is only recognized as a definable sub group within the Autism Spectrum in random pockets across the UK.  The majority of professionals don’t appear to have ever heard of it let alone studied the subject with an open mind.  This is something that I find rather incredulous to say the least, surely it is within the personal interest of any clinician, educational psychologist, pediatrician, social services or any other front line agency to keep abreast of any new developments within their field.

Even if your area doesn’t allow you to officially diagnose it, at least be aware of it from the point of view of the profile, what to look for and what the recommended handling strategies are.  You never know when a child with PDA accompanied by a fraught parent may land in your consulting room.  You may not have believed in PDA before, but by God, you will once you have spent any time with one.  I stress the words ‘spend time with’ because of the wonderful chameleon qualities that a child with PDA can exhibit which can successfully fool one and all that the parents must have Munchausen by proxy.  The child can, to the untrained observer or to someone entrenched in traditional ASD symptoms, appear to have no signs of ASD whatsoever.


Image has been created by the author of ‘Dinky and Me https://www.facebook.com/dinkyandme?fref=ts

Parents are basically left to self-diagnose their child and to single-handedly try to research their child’s condition, implement strategies, advocate for their child and fly by the seat of their pants with a child, that I have heard, described as the most complex in the spectrum. At the same time a parent is often simultaneously going into battle after battle with teachers, schools, social services, health professionals and anyone else who wants to stick their ore in stating its all in the Parent’s heads.   How any of us survive this constant onslaught both from our child at home and then from family, friends and professionals who all think that they could so easily deal with the child and quickly sort him or her out is, quiet frankly, a bloody miracle.

In short Parent’s are left isolated, alone and written of as ‘Nutters’ by many professionals while they are desperately trying to fight, survive and to simply be listened to and most importantly to have their child’s needs met.

The damage that is incurred to the child due to the lack of acknowledgment of the underlying condition and the unsuccessful implementation of even more damaging behaviour strategies, repeatedly enforced upon the child by clueless professionals can take years to undo.

The DISCO (Diagnostic Interview for Social and Communication Disorders) diagnostic tool devised by Lorna Wing and Judith Gould has specific questions designed to highlight whether a child may have PDA rather than low or high functioning autism.  I am amazed that a condition that is accepted by the National Autistic Society and is diagnosed and encompassed in the DISCO by the Lorna Wing Institute is still ignored by so many areas and is mainly completely ignored by CAMHS. Surely each individual area has a duty to ensure that they are keeping upto date with current conditions, profiles and strategies in order to offer the patients that visit them the very best in knowledge, understanding and care.

If you are a parent that suspects that your child may have PDA or if you are a professional that has taken an interest in PDA then please click on the following link.  Mollie is officially diagnosed with PDA by Phil Christie at the ‘Elizabeth Newson Centre’ and a couple of years ago I took part in a research project conducted by Liz O’nions supervised by Professor Francesca Happe.  Part of this research was for me to fill in two questionnaires relating to Mollie’s behaviour and profile. One of the questionnaires was primarily using the questions that were originally devised for the DISCO.  Mollie was chosen as one of the children that most accurately fitted the original profile described by Professor Elizabeth Newson and was therefore subsequently used for the research data.  So, if you would like a fairly accurate description of the types of behaviours that are indicative of PDA then please click on the links below which I have already completed detailing Mollie’s behaviours at that time.

PDA interview mailed version

Study screening questionnaire-mail out

For more information regarding these questionnaires and their purpose please click on the following link.


On the surface these questionnaire’s may make grim reading and can easily be interpreted as just an extremely naughty child, desperate for attention and her own way at any cost.  This is where it is so important to see the reasons behind the behaviour so that a successful outcome can be achieved both for the child and for the family.

The behaviours are simply the symptoms of what is going on at the core.  At the core of a child with PDA is a child with autism, confused, frightened and in a permanent state of high anxiety and alert.  Stuck in the middle of a confusing world where the nature of social interaction and communication that comes so naturally to you or I is just so desperately misunderstood by them. Desperately trying to navigate the social highway they are often also in a state of constant sensory overload and working so very hard to try to fit in but just not understanding where it all goes wrong.

my child isn't rude

I have written this post and shared these questionnaires with you in the hope that they may be of help to any parents out there who are considering PDA as a possibility for their child’s behaviour.   PDA isn’t just about refusing demands or controlling people but it is also about all of the other aspects as well.  The fantasy & role play, the social manipulation used to avoid and to control, the obsessive nature often shown around people and so on.  Hopefully these questionnaires will help to give and all round picture of PDA that may assist you when you are wondering if this could be your child or if you are trying to persuade a professional as to why you think your child could have PDA.

I am also trying to highlight the absolute need for professionals, especially the front line professionals, to start to take a serious look at the profile of PDA so that they can educate themselves on this most fascinating condition.  Surely just wanting to know your area of expertise inside out should make you want to explore and delve into the concept that PDA is a definable sub group within the Autism Spectrum. These children and their families need your help and support because without it the Mountain really can become to steep to climb.

Thank you for reading this post and please feel free to share it or to share the questionnaires in a quest to get PDA heard, accepted and recognized.

Comments on: "Does Your Child Fit The PDA Profile?" (6)

  1. […] Does Your Child Fit The PDA Profile? […]

  2. Hi Jane – link me up! I am writing a new Series on ADDandSoMuchMore which will begn with sound sensitivity, but will go through each of the senses briefly (series will include SPD, sensitivities and defensiveness, as well as a discussion of communities affected – ADD too, natch!) — and I’m running out of time for research.

    I KNOW you have many articles that will relate – but I’m not sure which ones they are (if you can’t get to it before my first article posts, later in Nov. ’13, leave ’em in the comments section once it does and I will move them up into the article itself.) I’m linking THIS page already, btw.

    btw – I can’t BELIEVE you have time to tweet – given everything else you have to manage. My hat’s OFF! The “socials” simply swamp me. Email and blogging push me right to the edge already.

    Madelyn Griffith-Haynie, CMC, SCAC, MCC
    – ADD Coach Training Field founder; ADD Coaching co-founder –
    (blogs: ADDandSoMuchMore, ADDerWorld & ethosconsultancynz – dot com)
    “It takes a village to educate a world!”

  3. Hi Madelyn, I am about to link you into my blog roll. Re sensory stuff I will try and write a specific post which you can link through to your blog and then I can link your articles on sensory issues back to the post on mine. Hope that makes sense. Re tweeting I’m a bit of a twitter cheat lol my blog posts and facebook page comments automatically get forwarded to my twitter account and so it kind of runs itself. I know what you mean though, I do get overloaded with all of the blogging, facebooking and so on. I take breaks now when I start to get that swamped feeling XXxxx

  4. […] Does your child fit the PDA Profile? (understandingpda.com) – RARE info, btw […]

  5. Mrs A roberts said:

    Hi my name is angie I believe my son to have pda he is ten I did the questionair he got 52 he has an appointment with professionals in January but I don’t think they diagnose pda in this area he doesn’t fit autism only traits I was told by a child pyscologist he thinks adhd but he doesn’t fit all that only reading about pda did he tick so many boxes that was my son his anxiety and panic attacks daily hits me 15 times tonight he hurts but a school he is passive dosent really talk to teachers only when he has to they say nothing wrong please any help would be appreciated I’ve been trying to get help for the last two years

    • Hi Angie, the following information may be helpful for you re trying to support a diagnosis.


      Firstly I would make a strong case for your argument, a bit like compiling a watertight case with which to go to court.

      Building your case

      Print off the diagnostic criteria for PDA and write a few points on each diagnostic criteria about how your child exhibits certain features of PDA. Diagnostic Criteria

      It is also useful if you can provide evidence from someone, other than you, who can support your concerns and has witnessed or experienced the difficulties that you are concerned about. This person could be a grandparent, friend, teacher or an out of school activity leader to name but a few.
      Include information from the National Autistic Society in order to show that PDA is becoming more widely recognised and accepted by various services and agencies. NAS link

      It may also be beneficial to print off the PDA Society’s booklet for clinicians Clinicians Booklet

      Finally it may be a good idea to highlight that although PDA is an Autism Spectrum Condition and that individuals with PDA do present with ‘Autistic Like Traits’ but that these traits can often be atypical to what may traditionally be seen in an individual with a more typical presentation of ASC. comparison to autism and Aspergers
      and info card ASC v PDA

      Choices of what you can do next
      Visit your GP to discuss the information that you have collated with a view to proceed to the next step in the process.

      Point out that it is well documented in many publications that the diagnosis of PDA and the application of strategies early on is of paramount importance to the child’s long term prognosis both within education and at home. Request that all of the information that you have provided is put in your child’s medical file and that your child is referred either to a Paediatrician or your local ASC Diagnostic or Child Development team for a full assessment in order to identify the true underlying issue of his difficulties. CAMHS should perhaps be a last resort as they are responsible for mental health issues and are often not qualified or experienced to diagnose neurological conditions. It is essential that any clinicians assessing your child are experienced in diagnosing PDA and/or complex presentations of ASC.

      If local services refuse to acknowledge PDA at all then you can still request an ASC assessment with a clinician experienced in the different ways that ASC can present because one size does not fit all. If ASC is diagnosed request that there is at least a reference to demand avoidance and a sign post to PDA strategies in the report.
      Assessment outcomes

      If they say that they don’t have the experience, skills or knowledge to assess or diagnose PDA locally then you can request that your GP applies to your local Clinical Commissioning Group for funding for an out of area assessment. If you do manage to secure funding then qualified professionals who do offer this service can be found here. Professionals

      A parent has also informed the PDA Society that their child was diagnosed by Dr Jonathan Middleton based in Sheffield middleton psychology

      This service is led by Dr Judy Eaton who is highly experienced in the field of ASC and the PDA presentation help4psychology

      If the services involved refuse to do this then you can complain to your local NHS Trust about the lack of support and the refusal to assess your child which you may see as a failure in their duty of care. NHS Complaints

      Some parents have found it useful to involve their local MP when trying to access services and so this is also a step that you may wish to consider.

      If all else fails then you can approach one of the clinicians in the links provided above for a private assessment. The costs vary from about £1500.00 to £3000.00 depending on which service you choose. However it may be wise to contact them directly in order to gain current and more accurate information re the costs and the waiting list involved

      I hope this helps xx

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