Because the recommended handling strategies for PDA are different than those that are traditionally beneficial for individuals with a more typical presentation of ASC, a differential diagnosis is highly important.
What if my child is already being, or is about to be assessed for ASC?
If your child is currently or is about to be assessed for ASC it may be worth highlighting the need for a differential diagnosis now and requesting that PDA or demand avoidance is reflected in the final diagnostic report. The importance of this being, to signpost any subsequent professionals that may work with your child, both now and in the future, to the most suitable strategies. Outcomes of an Assessment
What if my child already has an ASC diagnosis?
If your child already has an ASC diagnosis then it may be worth approaching the team that diagnosed your child and requesting that the diagnosis is refined in order to reflect PDA or demand avoidance. Information of how to do this can be found here
What if they say that they can’t diagnose PDA because it is not currently in the diagnostic manuals?
Diagnosis of PDA is still very much a post code lottery but more and more NHS services are gradually assessing and diagnosing PDA or at least making a reference to it in the child’s diagnostic report E.G. ASC with demand avoidance or ASC with a profile consistent with the profile of PDA. Many NHS Trusts do not have a specific policy on PDA meaning that a clinician may often be free to use their own judgment.
What if they say that they do not have the skills or experience to diagnose PDA or refuse to make any reference to it in the final diagnostic report?
It may still be advantageous to continue with the assessment process. An NHS diagnosis of ASC is far better than nothing and can open doors to support from local services. However, it may do little to signpost other professionals involved with your child to the correct support and strategies. Therefore, it may be an option to simultaneously begin the process of requesting an out of area referral to a clinician who is experienced in diagnosing PDA. Information of how to do this can be found here
Hopefully these quotes from the PDA Society and highly experienced and recognised professionals within the field of ASC may help you to defend your case when you are faced with professionals who resistant to accept the validity of PDA.
‘A diagnosis of ASD defines the underlying developmental condition, but does little to signpost towards the specific needs and most effective interventions for a person with PDA.’ Dr Judith Gould, Director of the NAS Lorna Wing Centre for Autism:
‘Diagnostically the PDA sub-group is recognisable and has implications for management and support.’ Dr Judith Gould, Director of the NAS Lorna Wing Centre for Autism:
‘Those with PDA share areas of difficulty with other autism spectrum disorders, but strategies and approaches found to be effective are quite different. Differential diagnosis is therefore important to signpost towards appropriate educational and handling interventions.’ PDA Society
‘Since the diagnosis is not currently in the diagnostic manuals, a diagnosis may have to come under the term Autism Spectrum Disorder but should be qualified by something along the lines of ‘resembles the profile described as Pathological Demand Avoidance’ as this is what signposts teachers, parents and other professionals to the understanding and better management of the condition.’ PDA Society
‘The author and colleagues at Sutherland House, as well as those working with children who had been referred for specialist assessment, were describing how many of the generally accepted strategies that are advocated for working for children with autism and Asperger’s syndrome were not proving successful for children with PDA; an altogether different emphasis was required.’ Phil Christie, The Distinctive Clinical and Educational Needs of Children with Pathological Demand Avoidance Syndrome: Guidelines for Good Practice. Taken from the Good Autism Practice Journal published by BILD, 2007, by kind permission.
‘There is little available research evidence about what kind of long-term outcome is likely for children with PDA. However, without appropriate diagnosis and support, both for the child and his or her family, this has the potential to be very poor.’ Dr Judy Eaton (Dr Judy Eaton wrote the first and only published research paper about PDA in Adults)
The credentials of these experts can be found below
Phil Christie is Director of Sutherland House Children’s Services and leads a team of Consultant Child Psychologists at the Elizabeth Newson Centre, which carries out training and research activities and has particular expertise in PDA. He is also Associate Editor of ‘Good Autism Practice’, and became Chair of the Advisory Council of the Autism Education Trust in 2009.
Peer reviewed published papers, relating to PDA, by these experts can be found here