Parenting is a privilege that comes bundled with unpredictable and constantly evolving challenges. Few adults would say they felt adequately prepared to be parents but, happily, most of us manage to convince ourselves we are somehow muddling through, drawing on support and advice from family, educational and health professionals, and reassuring self-help articles, books and media.
When a child has a developmental disorder, however, advice and support from these customary sources rarely suffices, and can be contradictory, upsetting to parents, grandparents and other guardians, patronising and incomplete. This leaves those close to the child forever seeking answers and wanting more in the way of empathy, practical help, meaningful services and well-informed encouragement.
Developmental disorders are many and varied, and some are more obvious to people outside the child’s immediate circle than others. Some children with such disorders are identifiable because they have genetic conditions such as Down syndrome or cerebral palsy, with familiar characteristics, or because they use hearing aids, cochlear implants or electronic communication aids or signing, rather than speech. Other children have so-called “invisible disabilities” with no discernible physical features or tell-tale equipment to signal a developmental difficulty, despite their having an autism spectrum disorder, a learning disability affecting reading and spelling, an acquired brain injury, a developmental language disorder or some combination of these.
Developmental disorders can affect every aspect of a child’s progress and wellbeing, including their speech and language, behaviour, attention/concentration, working memory, social and emotional skills and, of course, their academic success.
Where do parents go for accurate, unbiased advice when they suspect there might be a problem, or when there is one undeniably staring them in the face? Many turn first to the much-maligned internet. In researching information for our forthcoming book, Making Sense of Interventions for Children with Developmental Disorders, we found that the internet is both a blessing and a curse for parents seeking information about intervention types, interventionists to trust, and avaricious and unscrupulous practitioners to avoid, including “snake-oil merchants”, peddling their wares with persuasive, sometimes shamelessly guilt-inducing marketing pitches and testimonials.
Parents might also seek accurate and up-to-date information from traditionally trusted sources such as family doctors and schoolteachers, but there are literally hundreds of interventions on offer, and precious little guidance as to how parents should sort the proverbial wheat from the chaff.
The uncertainty and exploitation of families doing their best to help their children was the impetus for us collaborating to write our book. We pooled our combined expertise in speech-language pathology, psychology, clinical practice and academic research to de-mystify and critique the ‘intervention marketplace’ for parents of children with developmental disorders and their wider families, teachers and clinicians.
Our book covers the most commonly occurring developmental disorders and their management, explaining in accessible language what the current state of the science is on them, as well as debunking common myths (for example, the idea that children with Down syndrome have such sweet temperaments or that children with dyslexia have exceptional talents in other areas).
Myths about children’s typical development and developmental disorders are perpetuated by folklore and via alternative practitioners keen to make a quid on the back of parental anxieties and good intentions. In many cases, they are also propped up by misinformation that is shared by university academics educating the next generation of schoolteachers and health professionals. Such endorsement makes these myths particularly resistant to eradication via scientific evidence, meaning that parents receive conflicting advice and may spend large amounts of time, money and misplaced optimism on approaches that do not make a material difference to their child’s development. Sadly, as we explain in the book, in some cases, actual harms stem from the application of non-evidence-based interventions for children with developmental disorders.
There are some approaches, however, for which scientific evidence shows promise. So addressing developmental disorders need not be a quagmire.
Dr Caroline Bowen is an Australian speech-language pathologist. Professor Pamela Snow is head of the Rural Health School at La Trobe University.
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