The girl with wavy brown hair looked out from the photograph with a sweet smile. Deep behind those eyes and perfectly turned nose, however, lay the gyrations of the gray and white matter of her brain which had somehow gone awry. She has autism, explains my friend JB, who was showing me photos from an iPad app they use, called Pictello. It is a powerful tool for JB to create “social stories” to help children with autism develop skill sets to become more functional in this world. The app costs $20 and is genius in its simplicity. She can upload photos or videos and add custom text to create a personalized story book which can be viewed on an iPad. It will even read aloud in pre-loaded voices or the voices of people familiar to this little girl, such as her family, JB, or other trusted sources. When JB first met her, she was a toddler trying to start mainstream preschool equipped with one single word, “flower,” as her only communication tool other than gestures to try to indicate all of her varied needs. By nature, she has trouble making sense of verbal and visual cues, and suffers from many anxieties. However, she had 3 amazing pieces of luck in her corner: her supportive family, my friend JB, and Applied Behavioral Analysis.
Applied behavior analysis, or ABA, was initially developed in the 1960s and utilizes principles of learning and behavior theory to develop individualized plans designed to make meaningful improvements in “socially significant behaviors” like school work, communication, eating, personal hygiene, and life skills like time and money management. Decades of research has shown proven effectiveness, and currently ABA is endorsed as a treatment for autism by the major medical societies. In the US, 44/50 states now mandate insurance coverage for these types of services.
I looked again at the social story she was showing me as an example. Like many children with autism, the girl in the photo had difficult understanding not only emotions, but also the sensations she felt in her body, which could be overwhelming, scary, or create awkward situations for which she did not know how to react. Although she was eventually potty trained, she remained fearful of toilets in general and would not use a bathroom outside of her home. Think about that for a second: how narrow would your world have to be if you are unable to use any other bathroom other than the one in your home? How would you handle school, trips to the grocery store, family outings? Fortunately, my friend has an incredible innate talent to be able to see behind those eyes and straight into the way she thinks, and equipped with ABA teaching and her own instincts, knows how to address her fears and give her step by step tools to move forward. As she says, it is all about “unblocking them and opening up their worlds.” I think of it like the way my brain works (or rather, does not work) with my terrible sense of direction. I can emerge from a train station in a new city and be completely frozen, unable to figure out which way to go. But, with my trusty GPS on my phone, instead of being stuck I can literally follow the little blue dot to any destination. Since the little girl was afraid of toilets, JB made a lovely little story showing pictures of toilets of all types, and step by step instructions and reassurances depicting happy people unafraid to use them. She even included a picture of a cat enjoying the bowl, to appeal to the little girl’s love of cats. This story, with lots of practice, became an essential tool for her to address her fear, and I think was vital to helping her be able to leave her house. “Start here, go anywhere” only works when you can indeed “go” anywhere.
Similarly, she developed a fear of going in any car other than her own. Slowly, JB introduced her to her own car, first going near it, then practicing touching it, then reaching into the front seat, then reaching further inside to take a piece of chocolate off the seat (I want that car!), and eventually by following that “blue dot” one step at a time, riding not only in JB’s car, but any car anywhere. Wow. With her talent, this girl’s world is suddenly rich and full of potential. In sharp contrast, a few days after I sat with JB, I was seeing patients in the office. One of my patients in the morning had Down syndrome and autism, and his weary parents said that they had a set back as they had to sell their new car and buy a replica of their former car, as he refused to travel anywhere except for in that one vehicle, and only if his mother was driving. And even then, his willingness to get in or out of the car was limited to a few familiar places. They had no respite, and the strain was showing. Then in the afternoon I saw a girl who had isolated herself in her room and was afraid to go anywhere. At all. Getting her to my office had apparently involved several hours of hysteria. Several HOURS. She would not use the bathroom, would not ride in anyone else’s car, and would not go anywhere other than school and her home. How can any child reach their potential if they are so limited, unable to travel the road, paralyzed by their own inability to process and work through their anxieties?
The inequity was striking. I wanted to call my friend and beg her to see these two patients, as I knew the possibilities, and knew the magic she could work. Neither family had heard of ABA or seen a social story. If ABA is such an effective therapy, why is not used for all children in need?
I wondered about the cost. It turns out I am not the only one, as a number of research studies have looked into the cost burden. For instance, in a study published in 2014, Buescher et al found that total lifetime costs for an individual with autism was $1.4-2.4 million in the United States. They conclude, in part, that the significant economic burden “may help focus the attention of decision makers on the need for interventions specifically for adults or for greater attention to interventions earlier in life that have the potential to reduce later high expenditures by changing the trajectory of the disorder.” I could not agree more, as I thought about the difference of my friend’s little girl driving off to see the world, working her way toward learning life skills and then who knows how far she will go, vs the girl I saw in my office, too afraid to leave the confines of her own room. And all because of sound behavioral theory, and $20 for an app.
So how burdensome is ABA therapy, and paying for an educator to deliver one on one care? The state of Missouri actually looked at this, analyzing the cost vs benefit of a law that mandated coverage of people to deliver ABA type services for patients with autism in their state. Much of the analysis is over my head, but I read their report anyway, looking for information about whether investing what seems like a small amount now, when children are young, and giving them the tools to maximize their potential, will pay off in dividends later. The Missouri Department of Insurance, Financial Institutions and Professional Registration concluded that “the costs associated with the autism and ABA coverage mandate has to date, been minimal, even as the mandate has led to dramatically expanded coverage and the delivery of medically beneficial services. Applied behavior therapies have been shown to dramatically reduce long-term costs for a significant proportion of individuals diagnosed with an ASD [autism spectrum disorder], and to significantly improve their quality of life. The law has achieved its purposes in an unqualified way for every measurable metric.” I had to read that last sentence several times. Whaaaaat? A governmental agency concluded that?
Why are we not doing more of this in medicine? Now I know that not every town has access to professionals with as much insight, empathy, patience, and sheer talent as my friend. However, there are some, and there are also ways to extend their reach, such as preprinted stories (which do exist, in many forms). As a health care field, we need to be more attuned to the need for these adjunctive services to fully support a child. How can I expect my patient to keep her heart healthy if she is too afraid to go for a walk? All children with any chronic health condition, including those with autism, need to be given the tools to move beyond their diagnosis and realize the possibilities within themselves. The transformation can be remarkable. Just think how something as simple as a little potty talk can go such a long way toward opening entire new horizons.