Under one roof: How to treat autism in children

Cute 6 years old boy looking through the window

When I remember my first experience with autism spectrum disorder (ASD), it’s the airplane that stands out. I was growing up in Salt Lake City, in the 1980s, and my friend was diagnosed with autism. I’d never heard the word before, but I recognized that it must be important. You see, there weren’t any licensed therapists in the entire state of Utah, so my friend’s parents took the extraordinary measure of flying in a therapist from Boston once a month to work with her.

It made an indelible impression on me, and over the years I’ve come to understand how difficult it is for many families to get access to any therapy, let alone high-quality therapy. Even today, with “autism” and “spectrum” in our common vocabulary (the prevalence of the disorder has grown to one-person-in-fifty-four from one-person-in-one-hundred-fifty 20 years ago) access to qualified, effective, affordable care still falls short of serving the children who need it. ASD can be diagnosed in children as young as two years old, beginning a family’s odyssey of finding the right care. Parents seeking therapy for a child with ASD are too often overwhelmed by the anxiety-inducing demands of keeping so many balls aloft — the waiting lists for quality clinics, the schedules and instructions of independent therapists, their conflicting assessments and goals, the logistics of shuttling from office to office, the crushing bureaucracy of insurance and payment — that it makes something as outrageous as jetting in a therapist seem like a breeze.

There are few parental pressures more staggering than trying to coordinate proper care for a child diagnosed with ASD. On average, autism costs an estimated $60,000 a year through childhood, with the bulk of the costs in special services and lost wages related to increased demands on one or both parents. The inconsistencies of insurance coverage for families with ASD children has further exacerbated the access inequity, with some clinics or individual therapists not accepting insurance, forcing families to pay upfront and submit bills to their carriers for out-of-network reimbursement.

It goes without saying, the cost is prohibitively expensive for most families and presents them with agonizing choices. Mothers of children with ASD, who tend to serve as the child’s case manager and advocate, are less likely to work outside the home. On average, they work fewer hours per week and earn 56 percent less than mothers of children with no health limitations. And while ASD affects all ethnic and socioeconomic groups, children of color tend to be diagnosed later and less often.

Despite the rise of ASD cases in the United States among children ages 2 – 18, it isn’t definitively understood what causes the disorder. Scans show differences in the shape and structure of the brain in children with autism compared to neurotypical children, but causal theories abound, from heredity and genetics to environmental factors such as viral infections and exposure to chemicals. Finding a single trigger has stumped researchers. However, when it comes to therapeutic treatment for ASD, there is consensus: early, integrated, multidisciplinary intervention is the most effective approach for cognitive, behavioral and social development, and delivers lifelong gains.

So, if we can agree on the treatment, if not the cause, why haven’t we succeeded in providing greater access to therapy where a comprehensive, coordinated approach can be best delivered under one roof?

The Demand Supply Imbalance
As is the case with all prevalent medical disorders, the spiraling demand came first. The effort to supply enough quality child development clinics has been playing catch-up ever since.

Applied Behavior Analysis (ABA) therapy is the most commonly used behavioral intervention for autism. It is implemented one-on-one by Board Certified Behavioral Analysts (BCBA) and Behavioral Technicians (BT). Since many children with ASD benefit from speech and occupational therapies, STs and OTs also provide vital care. In other words, when it comes to addressing autism, it takes a team. And because children with autism engage more positively with in-person stimuli, it also takes a building. Trained, caring staff in a warm environment filled with joy is more than a nice thing to provide — it’s a clinical prerequisite.

These imperatives to care have been brought to crisis-level by the Covid-19 pandemic. The forced closure of some clinics has created a therapeutic vacuum that has not been comparably filled by other interventions. Zoom sessions are not a replacement.  Many children with ASD face challenges related to comprehension, connection and communication and have difficulty engaging with therapy behind a screen.

Unfortunately, the response to decades of demand has largely been haphazard and inadequate. Fragmented networks of therapists, and chains of ABA clinics that haven’t made a robust investment in teams and resources, with BCBAs supervising too many inexperienced BTs, result in a lack of consistent, collaborative care. Attempts by private equity to acquire and network small, privately-owned facilities in order to reduce costs of operation and improve service delivery has had little positive impact on client experience and outcomes.

Fixing the Imbalance
We can do a better job. The rising healthcare movement to treat the whole patient must be our movement as well. And though the necessary investment to do so will emphasize people and facilities, there is a role for integrated technology going forward. Remote video training that supports parent coaching, and wraparound technology for family scheduling, as well as support, supervision and quality reviews for therapists collaborating together on a child’s care, can both improve coordination and extend care to the home at the end of the school day.

The need and demand for access to quality, interdisciplinary therapy will only continue to grow. Early intervention, with consistent, qualified care provided under one roof, can generate better outcomes that will help children and their families change what autism means in their lives. With access to well-funded and resourced clinics, where every family from all walks of life are welcome, it will no longer require flying in a therapist on a plane.

Photo: MariaDubova, Getty Images


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