Missed or delayed Autism and PDA diagnoses

This article is equally applicable to both boys and girls. In the course of many years of clinical experience I have learned that boys can be just as good as girls at ‘masking’ their difficulties (particularly those who have the Pathological Demand Avoidance profile).

Way back in the early 2000’s I remember when the National Autism Plan for Children (NAPC) guidelines were developed to assist clinicians in the assessment and diagnosis of children with Autism. These guidelines were followed some years later by the NICE (National Institute of Care and Clinical Excellence) guidelines.

The guidelines recommend that any assessment should start within three months’ of a referral being made. However, this is usually not the case. In 2015 the National Autistic Society carried out a survey of parents who had been through the diagnostic process in the UK. This survey found that the majority of parents were aware that their child had a difficulty from a very early age. The average wait time between parents first noticing a problem and getting a final diagnosis, was reported to be around three and a half years!

The NICE guidelines also recommend that every child who receives a diagnosis should be given a personalised plan, an allocated key worker and ‘the opportunity to take part in age-appropriate psychosocial interventions’.

This clearly is not the case for the majority of young people. Parents often report that they have tried to access support for their children from their local Child and Adolescent Mental Health Services (CAMHS) without success. Some state that they have been told that their child is not presenting with ‘serious’ enough difficulties and that teams only have capacity to see children with very significant mental health issues. The trouble is, that without any post-diagnostic support, children and young people can go on to develop more serious problems.

Also, what a lot of people fail to understand is that there is no ‘quick fix’.  Children with Autism and PDA are not going to be ‘fixed’ by a few sessions of support around managing anxiety, or anger. They are likely to need specialist input from clinicians who really ‘get’ Autism and have the expertise to modify standard CBT (Cognitive Behavioural Therapy) and other approaches. Also, when working with children with Autism, it often takes a significant amount of time to build a therapeutic relationship.

In addition, with Autism and PDA, the issues that families and young people do have, tend to wax and wane. There may be periods where everything is going well, followed by a ‘crash’ when problems become more significant and troubling. This is often at times of transition, when school work or friendship issues become more complex.

Having worked for many years in NHS CAMHS teams, I do fully appreciate and am sympathetic towards the difficulties they face. I know how stretched they are and I am fully aware of the number of children (with and without Autism) who have very serious mental health difficulties. It is a constant challenge to juggle available resources and time.  Prioritising who to see is a nightmare.

How can this be done fairly? What may not appear to be a ‘serious’ mental health condition or a ‘serious’ level of challenging behaviour can change in a moment, and can quickly become a crisis, leaving parents and young people, struggling to cope.

Also, another argument for the benefit of providing intervention and support before crisis point is reached, is the huge cost (both financial and emotional) of managing a young person in inpatient services. There is a national shortage of adolescent beds throughout the country and young people often have to be accommodated in units many miles from home. By this point, things may have got so bad for them that they are self-harming, presenting with extremely challenging behaviour or are even suicidal.

Once in hospital, there is also no guarantee that they will be lucky enough to be treated by staff who understand Autism or who have the expertise to provide the modified intervention approaches needed by young people on the Autistic Spectrum. On top of this, once discharged from hospital, it can be very difficult to arrange follow-up support.

So when professionals (as cited in the article by Tracy Elliot entitled ‘Why timely diagnosis of autism is important’ – cerebra.org.uk ) state that reducing waiting times for Autism diagnosis may not be a ‘priority’ for the NHS, this seems to be extremely short sighted. Surely ensuring that children and young people are assessed and diagnosed in a timely manner would ultimately save the NHS huge amounts of money? In addition, it would also save young people and their families from enormous emotional upset and confusion. The sooner that families know what they are dealing with, the more likely they are to use the right strategies and the young people themselves will know that they are not ‘odd’ or ‘weird’.