Author: Ronit Molko

Imagine this scenario: you are providing therapy to an autistic child and they begin to fidget, twirl their hands, rock back and forth, scream and ultimately escalate into a meltdown. They refuse to make eye contact when you attempt to engage them and continue to thrash about without apparent purpose.

It is understandable to assume the child is refusing to comply with your requests and become frustrated with their outburst. But let’s put ourselves in the child’s shoes for a moment and recognize that they are communicating something very powerful: I’m in pain or I’m anxious or I’m overstimulated.

In therapy, it’s critical to consider the situation from the child’s perspective. Perhaps they have a hypersensitivity to the humming of fluorescent lights in the room, or the chugging of the air conditioner, or the buzz of ambient conversation. These stimuli barely ripple in your consciousness, but they are causing pain and anxiety for the child in your care.

The child wants to remove themselves from the ongoing physical distress but lacks the communication skills to ask calmly to exit the room. And so they have a meltdown.

If we alter our perspective a bit we can see that this behavior is a form of communication. We understand this with infants: a baby that cries loudly for no apparent reason is telling us something – they are hungry or tired or uncomfortable. We respond with compassion by offering them a bottle or putting them to sleep, or changing their diaper.

Similarly, a meltdown by an autistic child is an attempt to communicate illness, pain, fear, confusion, overstimulation or something in the environment that is bothering them. The actions in which the child engages, though they appear anti-social and self-destructive to us, provide sensory stimulation and a release of anxiety.

Recognizing that autism, or disorders along the autism spectrum, involve biologically-based behavioral excesses and deficits that are beyond the control of children with these conditions, can help us as therapists, parents, caretakers, and others respond with compassion to the pain they are suffering. Autism subjects children and adults alike to near-constant discomfort, anxiety, and/or pain that is difficult for the rest of us to empathize with. The better we understand this, the more effectively we can make therapy a better experience for everyone.

Even “high-performing” adults with autism whose communication skills are highly-evolved face similar stresses. Many highly intelligent adults with autism avoid education and career opportunities because the anxiety of navigating crowds, rules and interpersonal relationships is upsetting and overwhelming.

September is Pain Awareness Month, a good time to remind ourselves that people with autism are people first. They want safety and security and freedom from fear and pain just as the rest of us do. But their autism often puts them under a state of almost perpetual sensory and emotional attack. Trying to understand what others are experiencing in moments of need is the first step to compassionate and helpful responses.

If you’re looking for other ways that we can all work to improve the autism services industry, read more in my book, Autism Matters: Empowering Investors, Providers, and the Autism Community to Advance Autism Services.

The autism services industry – grounded in a desire to help people with autism live long, happy, independent lives – is hamstrung by an inability or overall lack of interest in developing a relevant outcomes measurement system that goes beyond measures of progress for individual consumers of the services.

This failure is rooted in competition among providers, the intervention of third-party payers, and a short-term outlook that doesn’t serve the lifelong needs of the clients themselves.

Unless providers wake up to the necessity of relevant and comparable outcome measures, insurance companies lacking expertise in the specialized subject of autism services will set the reimbursement rules based on misguided outcomes, distorting the delivery of services in manners detrimental to the health and well-being of autistic children and adults.

This is an industry ripe for reform in its outcome measurement. The key will be for providers to overcome their competitive instincts and recognize that development of meaningful and shared outcome measurements is critical to the success of everyone’s business – and to the long-term progress of clients.

Currently, it is not possible to compare one provider’s outcomes to another or to differentiate between providers on this important metric. The lack of established standards in autism services has created a vacuum, which third-party payers, those who now pay for the bulk of services to special needs children, are beginning to fill. Insurance companies with a limited understanding of the complexities and nuances of a well-constructed applied behavior analysis (ABA) program have begun to step into the void and determine which services will be reimbursed and how they will be measured. This third-party creation of the criteria for data collection and measurement of outcomes which form the basis for determining the future of much needed-services is not conducive to good science nor to the future of services for individuals who desperately need them.

Then there is the issue of myopia in outcome measurements. It is important to measure how well a child has progressed over one day, one month and six months of service. But the current state of the industry pays too little heed to whether the beneficiaries are prepared to live, work and relate to their fullest potential as adults. While services are generally delivered to children until early adulthood (0-18 or 22), providers must consider what years 20-78 will look like.

The result of that short-term care horizon, according to a Drexel University study, is that distressingly large numbers of autistic adults lack employment – a key driver of self-esteem, social skill-building, and independence. More than half suffer health issues and 58% are overweight or obese. Few choose their own living arrangements, with three-quarters living with a relative or in a group home.

Other studies have found that fewer than half of autistic adults today have a single friend who is not a relative or caretaker. Current methods of service delivery focus mostly on childhood progress without considering the functional long-term ramifications for clients.

Why is this a concern to anyone beyond providers? Because the skyrocketing rates of autism – now one is 59 newborns – means this is an issue that is starting to affect us all. Failing to promote independence and self-sufficiency imposes costs estimated between $1.4 million and $3.2 million over an individual’s lifetime, a cost all of us will have to bear.

It cannot be stressed enough how critical it is for providers across the industry to collaborate, communicate, and establish agreed-upon practices for measuring and evaluat­ing outcomes. Competitive inclinations need to be set aside, and standards must be determined. Failure to do so prevents us from clearly assessing how well we are doing and effectively finding ways to improve.

What’s more, when we allow insurance providers to determine how success is measured, we are giving away the most important power that we have as an industry. Establishing how we define success and what we consider meaningful outcomes for autistic individuals must be a power that resides with industry experts and those whose lives are most affected by these services. And, most critically, our goals as an industry must not become distorted by a dispassionate pursuit of profit.