Gaining autism assessment in the UK
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, SENCO, therapist (language or occupational), 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, many practitioners’ lack of understanding and exposure to PDA, and also the newer diagnostic guidelines.)
Specialists & teams
For a child, once they’re of school age, then the child’s teacher (in conjunction with the SENCO or special educational needs coordinator) will typically 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 neurodvelopmental consultants, 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.
(Individuals seeking private autism diagnosis can do an internet search using their local search terms and localities, to see what provision is available. Waiting lists are typically somewhat shorter. Private autism assessment and diagnosis for children from reputable organisations who also perform assessments for the NHS/Local Authorities as well as privately, reportedly may garner more support from the child’s educators and schools).
Gaining a diagnosis of PDA
Gaining a diagnosis of PDA (in Britain at least) is currently challenging. Many clinicians are simply not educated enough about PDA; the author of this piece was told by an ‘autism expert’ doctor that: “The jury is out on PDA.” Implying that it isn’t definitively a condition.
PDA is recognised by the National Autistic Society as an autistic neurology, and clinicians in the UK are able to make a diagnosis of PDA within the spirit of their usual diagnostic guidelines, along the lines of: ‘Autism Spectrum Disorder’, with a Demand Avoidant Profile. (This article is now quite dated – please refer to our newer articles about diagnosis. The latest diagnostic guidelines, the ICD-11, can be found HERE; see also America’s DSM5 diagnostic manual. Clinicians may in theory use ‘ASD, Unspecified’ as the diagnosis, but note Demand Avoidant Profile on their notes, for a PDA patient, e.g. using the newer guidelines. Please note, the information supplied here is based on our own experience and exposure to the subjects, and is not in any way a formal form of guidance.)
There is a 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 a supportive diagnosis on the NHS! (The clinician needs to note the ‘demand avoidant profile’ on the report, so that educators and families can use PDA-suitable supports).
Because adults and children with ‘PDA autism’ 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. (It is now somewhat dated, but still interesting).
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; the information we post here is based purely on our own exposure and experiences. Please arm yourself with all of the relevant information from your local authority and diagnostic healthcare body. Local and national charities involved in autism diagnosis and educational health care plan allocations can potentially assist you.
Read more about autism assessment in our blog below – updated summer 2018.
Also published on Medium.