A calm, easy baby from birth, around the age of two my middle son appeared to stall. He had a magpie eye for complicated words and entire Peppa Pig episodes, repetitions I now recognize as echolalia. He had no interest in role-playing games and hated getting his hands dirty. Eventually, his hand-and-leg-flapping — so jerky that we thought he was having convulsions — triggered alarm bells, visits to the neurologist and some answers.
I wonder today how that might have played out had it been 2020, with no school or playgroup to highlight differences, longer waiting lists for health services in many places, and plenty of Covid-19 restrictions. We might have waited months to be referred to a specialist, and not accessed speech and occupational therapy until even later, delaying support that has been instrumental in his development into a cheery middle-schooler.
Yet that is what has, in all likelihood, happened to tens of thousands of children globally, if not many times that — left behind during a pandemic that has already proven disproportionately challenging for those with special needs. Autistic children and adults, whose broad range of conditions often includes significant social and communication challenges, frequently struggle to read faces and now need to contend with masks. Those who thrive on routine are faced with the greatest upheaval most of us have ever known.
We know from multiple studies on autism spectrum disorder that early support can and does lead to better outcomes, given our brains’ plasticity in the early years. We’re better equipped than ever to diagnose it, even in children under two. But that’s only when someone is looking and knows what to look for, especially in less obvious cases. Autism is hard and often costly to diagnose — even outside a public health emergency. Despite advances in genetics, behavioral symptoms are key and those vary widely. A disturbed year of interrupted schooling and child care, when families avoided non-urgent doctors’ visits and had less interaction with others, may have allowed kids to slip by unnoticed and wasted precious time.
Autism isn’t the only condition that has fallen out of sight during the Covid-19 crisis, of course. Grave illnesses have been overlooked with dramatic consequences. And not everything has been bad: For some autistic children, virtual learning has been a respite from the stresses of regular school. Behaviors like hand-flapping that release anxiety or excess energy attract fewer stares. Intense interests can be fed.
It’s still a problem that should concern us all. Millions of children have already been let down by uneven education provision and access to technology during the pandemic, and this leaves an autistic cohort, already so often failed by society, even further behind. This is especially true in the developing world, where screening can be erratic at the best of times, and in frequently neglected minority communities. Autistic children become autistic adults, and societies already waste far too much of their talent. Plus, the numbers are not trivial: In the United States, estimates of prevalence have found an average of one in 54 children are identified as having autism.
It’s not easy to know today exactly how grave the issue of missed diagnoses is, since they’re uncounted. The past year has accelerated advances in telehealth, with clinicians and practitioners shifting some diagnostics, basic intervention and parent coaching online. This has brought good results, Isabel Smith, clinical psychologist and professor in the department of pediatrics at Canada’s Dalhousie University, pointed out to me. Continued progress should help avoid multiple long hospital assessments, bring down costs, and improve access to care outside cities and developed countries.
But, as Smith points out, it’s far harder to use video calls to diagnose patients with less prototypical patterns of behavior — those with significant additional conditions like severe anxiety or ADHD, or more subtle manifestations. Girls tend to do things like role play in a way far closer to neurotypical children. It’s even worse for the very young. Most problematic of all, even very experienced clinicians shifting to online work don’t have a baseline to work from and to compare patients against. Meanwhile, those lucky enough to be seen in person have to be assessed on their ability to interact by someone in protective equipment.
The opportunity cost is potentially huge. Intensive interventions based on applied behavior analysis, or ABA, have fierce supporters and opponents, and I won’t step into that debate. But basics like speech and language therapy to tackle the fundamentals of turn-taking and conversation, and occupational therapy to help with fine motor skills and coordination, can alone make a huge difference — especially if done early. Non-verbal children can make advances, too. Autism is a lifelong condition and is never “cured.” Certainly for my son, I would not want to change who he is. But we can move children along a multidimensional spectrum to a place where they can more easily fulfill their potential.
We know that very few autistic adults are employed — one in five in the UK, a dismal rate even compared to other conditions, and a huge waste of talent. There is no room to allow the pandemic to make that worse by delaying action and support.
The next step is to try and catch up with diagnosis and missed treatment. That can mean more screening efforts in the community and stepping in even before an official diagnosis, in some cases educating parents on how best to help their own children. The ECHO model pioneered by the University of New Mexico — which relies on experts in a hub working with practitioners to tackle conditions where specialists are in short supply — is one way to help many more families and medical staff.
Covid-19 has left behind many inequities and gaps. This is one we can, and must, close.
(Bloomberg)
