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.
Just beginning our PDA journey as our 12 year old's difficulties are being acknowledged. After 3 days of refusal to go and being taken in today she went to secondary school with her sister. Still 'never' doing homework. But at least school does study support. The biggest battle is self confidence. Anything that helps teachers understand this earlier is a good thing.
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ReplyDeleteAnother fabulous post Judy, thanks.
ReplyDeleteOne small typo:
"which has yet to be full researched, by a perfectly well meaning CAMHS clinician"
...missed the 'y' off the word fully.