Diagnosis of Autism Spectrum Disorder (ASD) with a profile of Pathological Demand Avoidance (PDA) is still very much a post code lottery. But, more and more NHS services are now assessing and diagnosing ASD with a profile of PDA or using similar terminology such as ASD with demand avoidance.
Collating your Evidence
Prior to beginning your diagnostic journey it is helpful to gather your evidence to support your requests for an assessment for ASD.
- Print off the key features for PDA and briefly illustrate how your child exhibits these features 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 experience. This person could be a family member, friend, teacher or an out of school activity leader to name but a few. It would be advantageous if the person giving this information does not live with the child.
- Include information from the National Autistic Society in order to show that the PDA profile of ASD 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
- Briefly list any other features of ASD that your child is presenting. The National Institute for Care and Excellence (NICE) provide a useful document that you can download which will help you to identify signs of possible autism in children and young people
- Make an appointment with your GP and request that your child is referred to the appropriate service for assessing and diagnosing ASD in children.
- As part of this process you may need to attend further appointments with other professionals such as CAMHS, a Paediatrician or a Child Development Centre (CDC) for the purposes of the professionals involved establishing if they agree to proceed with a referral for a full assessment for ASD.
- During this process you could share with them the evidence that you have collated and your concerns that your child may be presenting with the PDA profile of ASD
- Emphasis the importance of identifying if your child does have this profile of ASD and the benefits of a differential diagnosis i.e. because this has implications for understanding, strategies and management.
Some local NHS’s will be able to accommodate your request and will have the expertise to assess children for the PDA profile of ASD. However, you may need to compromise on the terminology used because this can vary. Some services may be happy to state ASD with a profile of PDA but others may prefer to state ASD with demand avoidance or something similar. The importance here, is not the exact terminology used but will that terminology and the contents of the diagnostic report signpost to the most suitable support, understanding and strategies.
If your local services reject the validity of the PDA profile or don’t have the expertise at a local level to assess for this profile of ASD, but do still offer an assessment for ASD then it would still be advisable to continue with any diagnostic path that is made available to you via the NHS. Even if you simultaneously decide to also pursue other options for an assessment.
Other Options – Individual funding request
If your local services completely reject the validity of ASD with a profile of PDA or say that they don’t have the experience, skills or knowledge to assess or diagnose ASD with a profile of PDA you can request that your GP makes an individual funding request to your local Clinical Commissioning Group (CCG) for an out of area assessment.
If your local CCG refuse to grant funding for an out of area assessment ask them to state clearly, in writing, the reasons for their decision. You may then be able to offer a counter argument and appeal their decision.
When you have exhausted NHS options
As a last resort you can complain to your local NHS Trust about the difficulties that you are experiencing re securing the correct assessment, support and understanding for your child.
Some parents have found it useful to involve their local Member of Parliament (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 the 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.
Privately Funded Assessments
Some parents choose to pursue an assessment and diagnosis first and foremost via an independent service. Others, financing depending, may choose this options if they have been unable to make progress via the NHS route.
Some local services may refuse to accept the outcomes of a private assessment. Therefore, prior to spending a large sum of money, it would be worth checking what the standpoint of your local services are regarding private assessments. If the assessment has been conducted in accordance with NICE guidelines there is no reason why the outcomes should not be accepted but this can become a grey area. It is worth considering this possibility as part of your decision making process.
The clinicians below all assess and diagnose ASD with a profile of PDA and can be commissioned by either your local CCG or privately by you. Costs can vary between about £1500.00 – £3000.00 but you would need to contact these services directly re costs, waiting times and their referral process.
The Elizabeth Newson Centre (ENC) – Nottingham http://www.norsaca.org.uk/diagnosis-and-assessment
The Lorna Wing Centre (LWC) – Kent http://www.autism.org.uk/lornawingcentre
Help for Psychology – Norwich http://www.help4psychology.co.uk/
Healthcare 4 Kids – Warwickshire http://www.healthcare4kids.co.uk/index.html
The Spectrum Centre – Northern Ireland The Spectrum Centre
Please note that I am not personally endorsing any of these services, this is a signpost from which parents must assume the responsibility of making their own enquiries.