Gaining autism assessment in the UK – including Pathological Demand Avoidance or PDA
The NHS funds autism assessment in the UK, although many local authorities are facing budget cuts. If a child is deemed to require autism assessment, it is usually the parent, teacher, or the nursery or preschool placement provider who will first flag up any issues. (For Pre school aged children, health visitors are also usually involved. NB – gaining a diagnosis of Pathological Demand Avoidance or PDA (in Britain at least) is currently challenging in some geographical areas, in line with budget cuts within the field of autism assessment in general.
Specialists & teams
For a child, once they’re of school age, then the child’s teacher (in conjunction with the special educational needs coordinator) will become involved, and liaison will occur with any number of specialists or teams – e.g. the community paediatrician, clinical psychologist, speech and language specialist, mental health clinician or team, e.g. the Child and Adolescent Mental Health Service, or CaMHS. (There may be several levels and stages of appointment, e.g. G.P, followed by community paediatrician, followed by a board assessment with a panel of experts.) For adults, the first port-of-call is usually the G.P, who can then refer to the local autism assessment provision for that local authority. (Check out our blog on ‘What to expect during your adult autism assessment’ HERE.)
Private assessments can also be made by clinical psychologists, and again a board of healthcare professionals like speech therapists and occupational therapists may also become involved in the process. This is because autism is assessed by another individual in an observational manner; it is rightfully important that the process is not taken lightly. In some cases in the UK, an exterior body or company that has effectively won the contract to undertake autism assessments will perform these referrals on behalf of the doctor or local authority or team who referred the child or adult for assessment.
Gaining a diagnosis of PDA
Gaining a diagnosis of PDA (in Britain at least) is currently challenging in some geographical areas, in line with budget cuts in autism assessment in general. It seems to be a sad fact that some clinicians are simply not educated enough about PDA; the author of this piece was, frustratingly, told straight from a supposedly ‘expert’ doctor that: “The jury is out on PDA.” Implying that it isn’t definitively a condition.
Well this isn’t the case, as PDA is recognised by the National Autistic Society as an autistic spectrum condition (ASC), and any relevant clinician in the UK is fully able to make a diagnosis of PDA within the spirit of their usual diagnostic guidelines, along the lines of: ‘High Functioning Autism Spectrum Disorder with a Demand Avoidant Profile’.
There is relatively small number of private clinicians in the UK who are renowned for having the capabilities and clinical exposure to diagnose PDA as an autistic profile; regrettably however, due to the small number of clinicians with the relevant levels of experience in this area of autism diagnosis, it does seemingly become somewhat of a postcode lottery to get this diagnosis on the NHS!
Because adults and children with PDA are some of the most socially capable of all people on the autistic spectrum, diagnosis can be especially tricky, as the assessment window is just a snapshot of them on that day; and if they happen to be very socially adept and socially manipulative on that day (and this is especially true of children), it may be hard for the less experienced clinician to see the more discreet signs.
NB – it may be necessary to request an ‘out of area referral’ for PDA assessment, in which case the individual needs to ask their G.P about the guidelines set down by the Local Commissioning Group (CCG). There is a blog called ‘PDA Guidance‘, which explains the process well, in a post called ‘Requesting an out of area referral’ – read more HERE.
There is a useful graphic which we have shared below called ‘The family of pervasive developmental disorders’, sourced from the excellent website “PDA Resource” which has links to various recommended websites, blogs, documents, graphics etc. This graphic is by Newson, Marchal and David.
Read the PDA Society’s diagnostic guide HERE.
Please note that as we always say in each blog post, here at Spectra.blog, we don’t claim to be experts about Autism Spectrum Disorders; the information we post here is based purely on our own exposure and experiences. We do not claim to be experts on any form of autism. Here in the UK, it is widely known that PDA assessment differs from different territories of the world, so it is a good idea if you are seeking an autism diagnosis for you or your loved one to arm yourself with all of the relevant information from your local authority and diagnostic healthcare body.
Also published on Medium.