Can Parents do More for Their Child with Autism?
If you are the parent of a child with autism, you may have seen some of the following claims in the media recently: “‘Super-parenting’ improves children’s autism” (BBC News); “Autism study shows benefits when parents get involved” (CNN).
Such headlines and snippets of information from the underlying Pre School Autism Communication Trial (‘PACT’) may have caused you upset over a seeming return to the bad old days when autism was believed to be the fault of the parents (the ‘refrigerator mother’ being just one example of historically flawed thinking). The fear might then be that if our own child remains poorly developed and non-verbal as they age, is it due to the fact that we as parents are just not ‘super’ enough?
This is simply not the case. Non-autistic (or ‘neurotypical’) babies demand that we interact with them and they show ready interest in learning about other people and the world around them. This means that most parents do not need to develop the skills in social referencing and joint attention taught by the PACT study. What is being asked of autism parents is that they have to be extra sensitive and responsive to early social cues which may not present themselves in a typical manner; nor may they occur that frequently.
Rather than become distracted by an argument about the scarcity of the provision of services for children with additional needs, my personal take on the updated PACT findings is that it is reassuring to finally have some formal evidence of positive outcomes from early interventions. According to Professor Jonathan Green, who led the study, these findings represent “an improvement in the core symptoms of autism previously thought very resistant to change”, namely restricted and repetitive behaviours and social communication.
I certainly do not support a push of the onus of responsibility and/or blame back onto parents - instead, I believe in encouraging an holistic approach which focuses not just on the individual with the diagnosis but on empowering all of those supporting the child (parents, siblings, teachers, health workers, the wider community) to improve communication and enhance connections.
That said, we parents are in a unique position to know our own individual child better than any professional or textbook - and whilst at first sight it may appear to add to the hours we already spend developing our child to gain sometimes even the most basic of skills, I agree with Professor Green that “the advantage of this approach over a direct therapist-child intervention is that it has potential to affect the everyday life of the child.” Our children find it hard to generalise new learning and apply it to different situations (so what they learn in clinic may not readily translate to home or school); and it can be a matter of arduous repetition and reinforcement before new skills can be consolidated (so a therapist visit once a month is not going to cut it).
Nonetheless, it is important to remember that you can still be mum or dad and provide the safe sanctuary of home life without turning every engagement into a rigid therapy task or burdensome item on your never ending ‘to do’ list - improving communication will improve your connection with your child and thereby produce gains across all areas of family life.
Enhancing communication - be led by the child
Neurotypical babies pick up speech and socially conditioned behaviour as part of their typical development through observation and copying. They love to look at our faces and are positively reinforced when we respond to what they do. In contrast, this learning of verbal and non-verbal language and social ‘rules’ does not come naturally for a child with autism so we need to work harder to model for them what we believe to be ‘appropriate’.
We should not expect the child with autism to do all the work in joining a social world heavily biased to those with neurotypical wiring - after all, it should be far easier for us to cross over into their world when we are the ones with ‘social imagination’ to predict other people’s thoughts, feelings and likely future behaviours.
So let them take the lead in social communication, as you need to become connected with them before you can model any alternatives. What are their interests? Provide a commentary about the object or activity they choose to engage with - your child will generally be taking in far more of what they hear (‘receptive’ language) than what they are able to say to you (‘expressive’ language) - so try not to be disheartened at only ever hearing your own voice and keep going!
It’s never too late - where hope meets science
Parents receiving a diagnosis for their child and being told that ‘early’ intervention is critical in improving outcomes face frustration when they then find such services are either non-existent or hard to access.
Autism is a disordered development - our children do not develop in the conventional manner according to commonly agreed development milestones and timescales. But not meeting the same timeframe for skill development is not necessarily the same as it never being achievable.
Although the early intervention window is undeniably a huge opportunity, please do not give up hope if extended wait lists for diagnosis mean you have already ‘missed’ this. Although experts used to believe that connections in the brain was fixed at an early age in childhood, recent research has found that our brains have the capacity to change through ongoing learning and experiences (as the absorption of new information grows new neural pathways, the links which send messages between different parts of our brain) - so keep encouraging and modelling for your child whatever their age.
So what can parents take away from the PACT findings?
One of the greatest skills for any autism parent to rapidly develop is a thick skin - but sadly that is not always possible, and the truth is that we are probably already likely to judge ourselves harshly, long before an attention grabbing headline (or a misplaced comment by a ‘helpful’ stranger witnessing our child’s struggles in public) reinforces our feelings of inadequacy.
You love your child, you are doing your absolute best, you try to absorb all of the new information on the needs of your child which bombards you. And yes, there are undoubtedly some great aspects to this latest study which can be incorporated into daily life.
But being a parent of a child with additional needs can feel incredibly isolating - so please do not misinterpret the latest media reports to mean that you HAVE to do it all on your own. Reach out to wider family and friends for help, access support groups and make it a priority to replenish your own energy reserves as often as possible. And when you are feeling strong and calm, try to tune into the subtle social cues your child is giving you and be led by them in their preferred method of communication - the resulting improved connection will reduce anxiety all round and hopefully allow you to get so much more out of your time together.
And P.S. In the eyes of those who matter, you already ARE a super parent
1 “‘Super-parenting’ improves children’s autism” www.bbc.co.uk/news/health-37729095
2 “Autism study shows benefits when parents get involved” www.cnn.com/2016/10/25/health/parents-childrern-autism-symptoms
3 Parent-mediated social communication therapy for young children with autism (PACT): long term follow-up of a randomised controlled trial
4 Parent-mediated communication-focused treatment in children with autism (PACT): a randomised control trial