Many parents whose child already has a diagnosis of an Autism Spectrum Disorder (ASD), may decide that it is necessary to have this diagnosis refined to more accurately describe their child’s profile to better support their child and meet needs.
Diagnosis of ASD with a profile of PDA is still very much a post code lottery but more and more NHS services are gradually assessing and diagnosing ASD with a profile of PDA or at least making a reference to it in the child’s diagnostic report E.G. ASD with demand avoidance or ASD 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. Other services may be restricted by their NHS trust’s local policy and guidelines.
Given the information above it may be worth, in the first instance, approaching your GP, Paediatrician or the team that diagnosed your child and request that they carry out further assessments, if required, in order to refine your child’s diagnosis with a view to include some reference to PDA or demand avoidance. It may be helpful to collate supporting evidence to take with you to the appointment.
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.http://www.pdasociety.org.uk/what-is-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 another family member , friend, teacher or an out of school activity leader to name but a few. Ideally the person providing this evidence would not live with the child.
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. http://www.autism.org.uk/about-autism/introduction/what-is-pathological-demand-avoidance.aspx
It may also be beneficial to print off the PDA Society’s booklet for clinicians and to complete the Extreme Demand Avoidance Questionnaire (EDA Q) contained in the booklet. http://www.pdasociety.org.uk/resources/awareness-matters-booklet
Finally it may be a good idea to highlight that although PDA is an Autism Spectrum Disorder and that individuals with PDA do present with ‘Autistic Traits’, that these traits can often be atypical to what may traditionally be seen in an individual with a more typical presentation of ASD. Differences between PDA and a typical presentation of ASD
Point out that it is well documented in many publications that the differential diagnosis of ASD with a profile of PDA and the implementation of the recommended strategies can be of paramount importance to the child’s long term prognosis both within education and at home.
It may be useful to share the following quotes in order to emphasise how important this differential diagnosis may be for the long term prospects of the child. Don’t let these quotes worry you they are solely for the purpose of supporting your request.
‘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
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)
If your local services still refuse to do this or state that they don’t have the relevant experience to do so you could ask your GP to apply to your Local Clinical Commissioning Group (CCG) for funding for an out of area referral on the basis that local services either do not have the relevant experience or are unwilling to diagnose ASD with a profile of PDA.
Services that diagnose ASD with a profile of PDA using a multi-disciplinary approach in accordance with National Institute for Care and Excellence (NICE) pathways can be found below.
The Elizabeth Newson Centre (ENC) – The Elizabeth Newson Centre Nottingham
The Lorna Wing Centre (LWC) – The Lorna Wing Centre Kent
Help for Psychology – Help for Psychology Norwich
Healthcare 4 Kids – Healthcare for Kids Warwickshire
The Spectrum Centre – The Spectrum Centre Northern Ireland
Please note that I am not personally endorsing any of these services, this is a signpost from which parents and professionals must assume the responsibility of making their own enquiries.
If you’re local CCG refuse to do this then ask them to state clearly in writing the reasons for their decision. You may then be able to offer a counter argument and request that they reconsider their decision or you can appeal their decision.
As a last resort you can complain to your local NHS Trust about the refusal of local services to fund an out of area assessment.
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 you are not satisfied with the response to your complaint you can then complain to Parliamentary and Health Ombudsman
If you do not feel that your local service is fulfilling their duty it may be wise to contact a specialised solicitor. Some solicitors in this field accept legal aid and so this may make this option financially viable for some of you.
The following solicitors specialise in SEN, Health and Community Care but you would need to contact them directly in order to ensure if they accept legal aid.
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. It is also worth exploring if your local services will accept the outcomes of a private assessment, because some services will only accept the outcomes of an NHS assessment, as part of your decision making process.