A report published today (26.10.16) in The Lancet suggests that children who receive Preschool Autism Communication Trial (PACT) intervention strategies between the ages of 2 and 5 years can show significant improvements in their autism symptoms and communication. The intervention is carried out at home, by parents who themselves have received training from professionals in social communication intervention. Parents and children attended 12 therapy sessions over 6 months, where both children’s and parents’communication and interactions were observed and strategies suggested as to how these could be improved, with daily, planned focus activity sessions at home. The media have reported on this, using the term ‘super-parenting’, suggesting that ‘good enough’ is not enough when it comes to parenting autistic children.
So, as a parent of an autistic child, how does this make me feel?
On one hand, it’s fantastic that there may be some hope for newly-diagnosed children and their families. If they can begin the intervention training early enough, there’s a chance their children’s social skills could be improved, making a huge difference to their lives. But that’s as long as a programme is rolled out nationally and is available to all. And as long as your child is diagnosed early, which, given the length of time it takes many families to get a diagnosis, is hard. Just getting an initial appointment with a paediatrician or speech and language therapist can take months. Tink is over four and a half now, so it will be too late for us, but I’m sure some of the strategies used can be useful for any family, no matter how old the child, and it would be great if information about this could be given to parents at diagnosis, instead of being left largely to drift alone in a sea of helplessness.
On the other hand, I feel a
bit lot put out. Not by the report, but the way in which the media have interpreted it; ‘super-parenting’ is not a helpful descriptor. I’m pretty sure most parents of children with special needs feel that they are trying to be super parents most days. But sometimes, ‘good enough’ is enough and no amount of trying harder will help, especially if your child is especially anxious, over-stimulated or just will not do as you ask as they feel under pressure to perform when demands are made of them. Being ‘good enough’ is something I am just coming to terms with, after so long of trying to be more than that, when actually the extra effort/heartache/anxiety/stress doesn’t necessarily pay off.
From what I can tell, the PACT intervention involves making small tweaks and adjustments to what we parents are already doing when playing and communicating with our children. And this is probably something all parents could do with knowing, especially in this day and age, when we’re all glued to our smartphones, tablets and laptops (including the children!) and the art of play and conversation is beginning to be lost. To suggest that we ‘autism parents’ need to go above and beyond assumes that we don’t already do that on a daily basis and feels a bit of a kick in the teeth, when really, we could all do with some parenting help to do the best for our children.
Parents of children with special needs already feel enough guilt, for one reason or another. We really don’t need the pressure of needing to become a ‘super-parent’ too.
Kelly is a mother of two – her son H and daughter Tink. H is home educated, Tink is autistic. Kelly is a self-employed Virtual Assistant… Life is busy!