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.
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.
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.
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.