Asking for an out of area referral can be a tricky and complex process and the acceptance of any such request may be determined by specific factors. Most notably that your case is exceptional (that the individual is affected to a greater degree or differently than others with the same condition) and that the treatment / service offered is likely to be substantially more beneficial for the individual than for others affected by the same condition.
Visiting your GP
In the first instance visit your GP and request an out of area referral, for your child, for an assessment of ASC that may best be described by the Pathological Demand Avoidance (PDA) profile.
Reasons for this Request
- There is currently no diagnostic pathway for this service provided by your local authority.
- Individuals with ASC/PDA present with different ‘Autistic like traits’ than other individuals with ASC which can easily be missed by a clinician not experienced in this field.
- Most notably they have better masking skills which can disguise the underlying condition, better imaginative play, social insight and communication skills than you would expect to see in an individual with a typical presentation of ASC.
- Individuals with PDA present with more challenging and complex behaviour than those with a typical presentation of ASC.
- These individuals have higher, parent reported, anxiety levels than others with a typical presentation of ASC.
- Management strategies that are often successful for individuals with a typical presentation of ASC are less successful for individuals with the ASC/PDA presentation. A completely different approach is often required.
- The extreme demand avoidance to everyday demands, underpinned by extreme and severe anxiety is unique to the ASC/PDA group.
- Early identification of this condition is paramount to the long term outlook for these individuals. Without which the individual is likely to experience additional, complex and severe mental health problems throughout life.
- A diagnosis of this condition will require the individual to receive a differential support package to those with a traditional presentation of ASC. This is especially important for education, social services support, within the home and for the long term outlook for the child.
All of these points can be verified and quantified by peer reviewed publications, research and quotes from highly experienced professionals within the field of Autism Spectrum Conditions.
Hopefully, by making these points, your case will be deemed to meet the criteria set by your Local Commissioning Group (CCG) i.e. your case is exceptional and that your child will substantially benefit from a differential diagnosis due to the differences between your child and others with an ASC and also the different strategies that a differential diagnosis will signpost others to.
Provide Evidence to Support your Request
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
Print of the quotes contained in this blog post which contains professional verification of The Importance of a Differential Diagnosis
Print off this blog post in full, which contains links to professional verification of the differences between PDA and a typical presentation of ASC Differences between PDA and a Typical Presentation of ASC
Print off information about PDA written by Phil Christie from the National Autistic Society’s webpage to illustrate the points that you have made and to show that ASC/PDA is now becoming more recognised across the UK National Autistic Society / PDA
Print off the PDA Diagnostic Criteria and write a short response under each one explaining how your child presents with this feature. Diagnostic Criteria
Print off the information contained in this blog post which is a list of clinicians who can provide this service in accordance with NICE (National Institute for Care and Excellence) guidelines. Professionals who assess and diagnose PDA
Provide evidence from someone, other than you, who can verify and has witnessed your child’s behaviour and how many features of your child fit the PDA Diagnostic Criteria. This may be a teacher, family member or friend to name but a few. Preferably someone that does not live in the family home.
Request that all of the information that you have provided is placed in your child’s medical file.
Request that your local MP supports you
Many parents have found it beneficial to ask their local MP to support them. You can do this by googling who your local MP is and emailing them with details about your situation and requesting support, or you can personally request this by attending one of their surgeries.
What if my request is refused?
If your request for funding is refused, a letter will be sent explaining why the funding could not be given. Further evidence that demonstrates that your case is exceptional – that you are different from other patients with your condition and that you would benefit more than they would – can be submitted at any point. An IFR (individual funding request) is not closed. If you are not satisfied that the correct process was followed by the Panel in reaching a decision, you may ask for it to be reviewed by an Appeal Panel. You also have the right to make a complaint at any point during the handling of your IFR. Ask for details of how to complain from the IFR team or from Pals.
Parent Guidance Leaflet re Individual Funding Request IFR-Patient-Leaflet-2013 (1)
If your complaint is not upheld you may be able to complain to the health ombudsman 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.
I can’t promise that this information will work but it may help, good luck in your quest for a suitable and correct diagnosis for your child.