Early life care when baby is at risk of autism: a response to the new Whitehouse study

Can autism be prevented?

For older babies and toddlers who are showing early signs of vulnerability such as less eye contact, fewer social gestures and pointing, less imitation, or less responsiveness to their name, the answer now might be perhaps, in some circumstances. This is definitely not to say that parenting somehow causes autism: like so much of our human diversity and neurodiversity, autism sits at a very complex interface between the dominant effects of genetic predisposition, which may be to varying and unknown degrees affected by certain complex environmental inputs and experiences. Earlier today I'd simplified and written 'yes' in response to that initial question, before going on to expand, but it's been pointed out to me that any simplification is understandably offensive for neurodiverse individuals and their families, and I'm really sorry. For a start, these families ask, does autism need to be prevented .... or just better accepted by the folks around them?

The ground-breaking study led by Professor Andrew Whitehouse from the Telethon Kids Institute in Western Australia, just published in JAMA Pediatrics, does show that in some circumstances, outcomes in at risk infants can be altered. Some in the community are asking just how relevant these outcomes are, really, for the child long-term, which remains to be seen. But eighty-nine families with babies and toddlers on average 12 months of age and showing at least three of those five vulnerable behaviours were joined up. These babies were, for unknown and usually genetic reasons, cuing or communicating less strongly. Half of the parents were randomly assigned a program in which a trained therapist helped them to identify their vulnerable little one’s tiny, easy-to-miss cues or communications, so that they could better respond and strengthen to-and-fro interaction.

The infants who received this special help from their parents were two-thirds less likely to meet certain criteria for an autism diagnosis at three years of age. This study does at least show the astonishing neuroplasticity of those toddlers’ brains. This study has definitely made me think, again, about the importance of early life care for neurodevelopmental outcomes. And so has a conversation this morning with a GP who is the mother of a child living with autism. She explained to me, kindly but clearly, that my blog from last night had been upsetting to read. 

Professor Whitehouse’s study immediately raises another vital question (or so I'd written): just how early is it useful to start thinking about pre-emptive intervention?

“What we’re doing is helping give the parents the secret as to how their baby’s communicating with them through their body, through their face, through their vocal expressions and how they can best communicate back to get those back-and-forth interactions to build the brain,” Professor Whitehouse explains. Or, my colleague asks, are we simply teaching a child to perform better, in a way that better meets the expectations of the adults that little person is desperate to please?

I'd been thinking - ever trying to break through into a situation where Possums & Co is positioned to receive research funding for evaluations - about what would happen if the kind of health professional support which helps parents and babies get in sync, which helps parents and babies grow their to-and-fro interactions, was available from the very beginning for all babies who are known to be biologically vulnerable including for autism (e.g, who have an older sibling or parent diagnosed with autism spectrum disorder)? Or even - heaven forbid - for all babies? 

If a baby’s brain can be shaped by helping parents read and respond to their precious little one’s cues from 9 months of age, how powerful could help with responding to their baby’s cues in the first sensitive 100 days prove to be?

In the first 100 days of life, rapidly developing neuronal pathways are critically sensitive to the environment and to certain kinds of stress, with life-long effects on genetic expression. Yet after the birth, parents receive huge amounts of conflicting advice from health professionals. For too many families in those first months, trying to read and respond to their baby's communications is fraught with anxiety, with feelings of disempowerment and even of failure. Parents receive conflicting advice about about how to read and respond to their baby’s cues when breastfeeding, about how to read and respond to their baby’s cues concerning sleep, about how to read and respond to their baby’s crying and fussing. Often they are advised not to respond, or to delay responses. Clinicians acknowledge inadequate training across each of these domains, which are so integral to a family’s life and communication with their newborn.

How does this health system confusion impact on our little ones born with genetic risk of autism? You could say that this is a question of national significance, not least because 53% of all children in the Australian National Disability Insurance Scheme have a diagnosis of autism.

I explored this question in an article published in 2019 in Frontiers of Integrative Neuroscience. In this article, I examined the evidence demonstrating the exquisite neuroplasticity of the first 100 days of life, and the significance for infants at familial risk of autism. I explained why Neuroprotective Developmental Care (or ‘the Possums programs’) offers an approach to infant-care in very early life which is, it seems to me, more likely than any other internationally available set of programs to support the healthiest possible development of an infant’s social skills. 

To my mind, Australian families urgently need their health professionals to be trained in approaches which arise out of the latest evidence, which do not inappropriately medicalise baby’s communications of distress in breastfeeding but offer effective solutions, which do not ask parents to ignore or delay responses to their baby’s communications in an effort to ‘teach baby to sleep’, which do not require parents to normalise or tune out to high levels of infant distress, but which address multiple underlying causes including the baby's powerful neurological need for rich environmental experiences. 

NDC uniquely addresses the many disruptors in parents’ postnatal experiences which cause parent-baby communication confusion.[1] So to my mind, NDC could be powerfully effective in shaping a little brain that is at biological risk of social communication wiring problems and incredibly cheap for the health system to implement. I can't see any other approach better positioned to remove the disruptors that interfere with parent enjoyment of and responsiveness to their baby's communications in the first months of life. Yet primary care research is devalued and severely underfunded. When I wrote this blog last night, I wanted to draw attention to the need for translational research in this space, to see if NDC really does improve parent well-being and child neurodevelopmental outcomes the way I suspect it does. 

But the GP I spoke with this morning explained to me that even though she is accredited in the practice of NDC, reading my 2019 research article made her feel anxious when her second child was born, the child who fell into the 'at familial risk of autism' category - as if she might get it wrong by not responding well enough to her baby, as if she might be responsible for her second child having autism. She told me that she loves using NDC in her parenting and in her practice, not because she wants to 'improve' her child or 'get it right' anymore, but because NDC supports her delight and relaxation and empowerment as a mother of a baby and this is good for everyone. (My words, not hers directly, but I think that's what she meant and I completely get it.)

And so I am letting go of the fantasy that a benefactor might jump up (strange how that completely unrealistic dream haunts one when so many research funding avenues are as good as closed!) and offer Possums a large sum of money to trial NDC as pre-emptive intervention for autism - if only I am able to make a good enough public case. If I try hard enough! If I get it right!

Instead, I'll focus on something that is real right now, like the NDC Rural grant that we have received from the Commonwealth through the Perinatal Mental Health and Well-being Program, a wonderful acknowledgement by the Australian Government of the way effective clinical care for breastfeeding, cry-fuss and sleep problems might impact upon parent mood, especially when integrated with the powerful and transdiagnostic strategies of contextual behavioural science (Acceptance and Commitment Therapy). I thank my GP colleague for sharing her perspectives, and helping me step back to let families who have neurodiverse children speak about what they would like to see trialled, and why, in the preemptive intervention for autism space.