It is the beginning of September again and parents all over the country are preparing for the start of the new school year. For some parents though, this is a time of increased stress, or even weary resignation, that once again they will have to face the daily battle of encouraging their child into school. For others, getting their child into school is a distant memory. These are the parents who have either made the difficult decision to home school their son or daughter, or have children who have voted with their feet and become ‘school refusers’.
Some of these families will have a diagnosis of Autism or PDA for their child, and others will not. The issue of a PDA ‘diagnosis’, or even a description of PDA as a distinct behavioural profile, remains contentious. Parents over the summer have reported that their local CAMHS team, or Local Authority, have ‘not accepted’ the PDA description given to their child because ‘it does not exist’ or ‘it is not in the manuals’. Autism was not included in the DSM until version 3 which was published in the 1980’s! That certainly did not mean that prior to 1980 Autism did not exist.
Unfortunately though, this rigid sticking to ‘what is in the manual’ is potentially very detrimental to children and their families. What may have been stated as a difficulty in formally diagnosing a condition which has yet to be full researched, by a perfectly well meaning CAMHS clinician, is often interpreted, Chinese whisper style, as ‘PDA does not exist’. When this then feeds through to school teachers and SENCO’s it can lead to tense situations between school and parents. This can leave many families facing a struggle to ensure that their child is appropriately supported in the classroom.
But what about those children and young people with PDA who are home educated, or simply refuse to go to school? Clearly some thrive and do very well away from the social pressures, and sensory overload, of school. Others do less well. I have become aware of an increasing number of young people, who are effectively ‘un-schooled’ to the point that they spend all day, every day, in their bedrooms, playing computer games or watching YouTube. Some become so socially anxious that they rarely go out of the family home. This can, and does, continue well into young adulthood. There are a growing number of support groups for parents of young adults with PDA and, sadly, this is a situation they are all too familiar with.
So what is the future for these young people? Many parents are desperate and burned out, unable to work or access any kind of social life.
Maybe the first step is for early recognition of the potential difficulties that children and young people with PDA face. Early recognition by both mental health teams and school staff. It is not good enough to simply dismiss parents and send them away on a parenting course, or label them as ‘anxious’ or ‘fussy’ parents. This is not going to help the child, or go any way towards supporting them through school. As stated, home schooling does suit some children very well, and for some is the best option. For others, though, particularly those with very rigid thinking and high levels of social anxiety, it may not be helpful at all.
Many children with PDA do want friends. They want to socialise and deserve the opportunity to learn, not just academic skills, but also the social skills that they will need in adult life in order to function in the world.
PDA does exist. The research evidence is growing and a much clearer picture is beginning to emerge about what PDA looks like, how it presents in both girls and boys, what kind of features distinguish PDA from other difficulties. I can wholeheartedly reassure any clinician or teacher reading this article that PDA occurs all over the country (and probably all over the world) in many different types of families. These families have NOT had the opportunity to talk to each other and come up with the same story to convince a clinical team. Neither have their children, who present in a remarkably similar way.
So maybe the best reception any parent going back into school after the summer holidays could have is for staff to say ‘I believe you, we will do what we can to help support your child’. Whether or not their child’s particular profile of difficulties currently appears in a manual is irrelevant.
For those interested in the research mentioned above, watch this space for future updates.