ABA

Looking Ahead to Next Evolution of ABA

Most professionals and families in the autism community would agree that over the past 30 years, ABA has served autistic individuals well, providing many of the skills and supports necessary to improve functioning and enable individuals to participate more fully at school and within family systems. So inevitably, it is time to evolve.

All companies and industries evolve or wither. Forces of change—internal and external—demand new approaches, innovative solutions, or a new direction. Successful companies and industries are always thinking about what is next.

Businesses generally follow an S-curve in their growth. After a period of investment and company-building, there is rapid revenue growth as the marketplace becomes aware of the business’s products and services and recognizes its relevance. Then the market catches up and growth stagnates unless the company innovates. When it does, it reaps the benefit of accelerated growth again.

The image below illustrates how this works.

I believe the autism services industry is at the inflection point of the S-curve. With great benefit to many thousands of people with autism spectrum disorders, ABA services are considered by most researchers, payors, legislators, and service providers to be the gold standard of treatment. In the process, and with the heightened demand for intervention, the delivery of ABA services has transformed into an industry. With over 30 financial investments in autism companies last year alone, the industry is quickly reshaping as investors look to scale services, leverage technology, and improve infrastructure and processes. But storm clouds are gathering.

We face a growing population of autistic adults who lack the necessary skills to live independently and whose parents are aging, unable to care for them much longer. What’s more, a growing number of children with autism are coming of age, many of whom lack the skills necessary for independent living, finding and maintaining employment, and forming intimate relationships. If the goal of the autism services industry is to prepare individuals with autism to live their lives as successfully as possible, there is a great deal of room for improvement.

An external force is at work as well and could be the main catalyst for evolution: third-party payers. Absent a coherent set of outcomes from the industry itself, insurance companies are beginning to dictate the rules of conduct in autism services, even though many lack the in-depth knowledge and expertise to do so. The best interest of autistic individuals risks getting lost in the maelstrom.

If we look at our industry objectively, we see one driven by short-term outcomes and often narrow commercial interests, rather than one united by a desire to discover and invest in the approaches that result in the best long-term outcomes for the population we serve. A regrettable lack of data sharing reduces industry-wide knowledge. Furthermore, a lack of universal standards and common measurements of outcomes stymies innovation across the industry. Without those clearly-defined, measurable outcomes that serve the long-term needs of our clients, we’re left with payors developing often poorly-conceived, short-term outcome values that fail to support the programs needed for adults so they can function independently.

As an industry whose purpose is humanitarian, we have our work cut out for us. We can stagnate and wither on the S-curve, or as an industry, we can innovate through the present challenges and reach a new age of growth, both in scale and quality of service. Any well-intentioned person in this industry prefers the latter. So, the questions as we look towards the future of our industry are: how willing are we to reject misaligned commercial interests and resist the temptation of shortsighted results? Can we instead work together, share information, develop common outcomes, and improve the results for our clients?

If we’re going to do it, we have to do it now.

 

For more on the future of ABA and autism services, check out my book, Autism Matters.

autism

Individuals with Autism Need Love Too

One of the most persistent misconceptions about people with autism spectrum disorder is that they are automatons without emotion. This arises from the fact that autism is at its core a communication disorder. People on the spectrum often struggle to show emotion, which can give the impression that they are uncaring.

Studies have shown that people with autism can have even more capacity for feelings than neurotypical people but lack the ability to express them.

In fact, the desire to connect with others and build satisfying relationships is universal, even for those whose style of communicating is not typical.

For adults on the autism spectrum, dating and romance are fraught with challenges. Dating is a complex, abstract dance whose rules are sometimes irrational and difficult to understand. For people already facing difficulty communicating and reading social cues, it can be maddening.

In addition, some of the subtle social cues – and even some of the more overt – can elude an individual on the autism spectrum. They might not realize that it is inappropriate to pursue a romance with someone already in a relationship, or who has expressed that they are not interested, or who is in a teacher or caregiver role or is under 16. The result can be humiliating and confounding.

Movies, YouTube tutorials, and websites dedicated to dating and romance for people with disabilities like autism spectrum disorder proliferate on the Internet. Among the most searched autism-related questions on the web is about whether people with autism can get married. (Of course they can, and many do.) At UCLA, a program called PEERS teaches social interaction skills to teens and young adults with autism spectrum disorder.

Despite this, most autism services are aimed at early intervention. Very little formal treatment addresses the topic of dating and romance for people on the spectrum, even though this is an essential part of a happy life.

Because the young adults targeted by the PEER program think concretely, many of their lessons lay out step-by-step guidance for how to act in various situations, including dating. Covered topics include how to ease into conversation and establish rapport before proffering a date request, and how to smile an appropriately coy smile, rather than a toothy grin when flirting.

Many individuals on the spectrum have an aversion to touching, though this varies widely from person to person. For many neurotypical adults, it would be difficult to date someone unable or uninterested in physical displays of affection.

With Valentine’s Day right around the corner, let’s not forget that people with disabilities possess the same innate need for love – platonic and romantic – as the rest of us. They may just express it differently.

To read more about the challenges facing the autism services industry plus ways we can advance care and improve outcomes for these individuals, check out my book!

with autism

Public Awareness and Understanding Create Safer Environments for Individuals with Autism

Most of the intellectual, emotional, and physical energy devoted to people with autism spectrum disorders focuses on their behavior and their understanding of the world. There is another component.

Our behavior and our understanding of them.

Imagine you were just as intelligent as everyone around you but functioned differently. You lacked the ability to communicate, to read social cues, or relate to others. Imagine that commonplace noises caused you physical and emotional distress.

Now imagine that, instead of removing those noises, or allowing you to escape them; instead of treating you with compassion for your deficits and disabilities; instead of making an effort to help you communicate your needs, people ridiculed you, shunned you and forced you to endure what causes you pain.

For many people with autism, that is their daily life. In my book, Autism Matters, I tell the story of Jared, a young man tormented by schoolmates. He complained, “They said I had poor social skills, but what about the kids who were bullying me; don’t they have poor social skills?”

More than social skills, many mistakenly assume people with autism have intellectual deficiencies. Some do, just as some neurotypical people do, but many autistic people are extremely intelligent. They must contend with that stigma on top of the challenges of their condition. “I have to work 10 times as hard as you,” Jared noted, “to be taken seriously.”

There are many examples of eminent scholars who have autism spectrum disorders, the most famous of whom is Dr. Temple Grandin, a professor of animal science at Colorado State University and a renowned consultant to the livestock industry. Dr. Grandin has been the subject of books and movies, but she is hardly alone among people with autism in her intellectual accomplishments.

We need to look no further than the very first person diagnosed with autism to appreciate the power of a compassionate community. Don Triplett, now 86, had the good fortune to be born into a prominent family in a small town. As autism’s Case 1, Triplett attained some notoriety and the support of the townspeople of Forest, MS, where everyone is his friend, and more importantly, his protector.

Others of that generation who today function in mainstream society are beneficiaries, like Triplett, of parents who refused to institutionalize them and instead demanded that they are treated like people.

That kind of compassion and understanding can alter the life of a person with autism, but it requires that neurotypical people rise above their basest instincts and find the best of their own humanity.

We have come a long way in science and in the general public in our understanding of autism and we have a long way to go. On both fronts, we have a responsibility to improve our knowledge so that the next generation of Jareds don’t have to endure the outrages he suffered. For the autism services industry, increasing community understanding of autism will be a continuing challenge going forward.

There have been many examples of community members or public officials reacting to with ignorance to people with autism – whether to a meltdown or a lack of communication – with disastrous results, even as disastrous as death. These represent the glass half empty side of the equation.

On the glass half full side, I detail in my book the story of author Russell Lehman, whose emotional outburst in response to flight delays at an airport drew a sympathetic response from an American Airlines ticket agent. Witnessing Lehmann’s tantrum, the agent comforted him and helped him calm himself, board the plane and reach his destination.

I look forward to the day when that is the norm and not a remarkable story worthy of inclusion in a book.

autistic adults

Autistic Adults and a New Market of Demands

Adoption of Applied Behavioral Analysis (ABA) for children with autism spectrum disorders was a remarkable breakthrough in treatment that has changed the lives of people on the spectrum and those around them. It has helped countless individuals learn new skills and increase their ability to communicate and socialize. And while ABA among children can make a difference in adulthood, services for autistic adults need to improve and adapt. 

The larger question, though, is not whether children in therapy learn specific skills, but whether they acquire the ability to care for themselves and navigate the world in which they live. On this count, our satisfaction with the success of the autism services industry must be tempered. As much as it has progressed in the past 50 years, even the last 20 years, we cannot accept the state of autism services today. We must push ever forward to develop new innovations in the care and treatment of autistic adults so that they can create self-determined and fulfilled lives.

Autism treatment does a remarkable job of teaching children how to indicate what they want, reduce their meltdowns, identify colors, and even accomplish practical tasks like tying their shoelaces. But research shows it has largely stopped at those kinds of discrete skills.

The result is that autistic adults, even those who have enjoyed successful intervention until age 18, often cannot live independently or secure employment, struggle to develop long-term friendships and often are not making choices about their own lives.

A Drexel University study found that autistic adults are only somewhat better off than they were back in the days when they were permanently institutionalized. It found that only one in seven people with autism is employed in the community (rather than in a program for people with disabilities) and fewer than half choose their own schedules. Other studies have revealed that most people with autism don’t have a single friend who is not a relative or caregiver.

For all the advances in treatment, this is an unhealthy state of affairs. Not surprisingly, the Drexel research found that adults with autism suffer a plethora of physical and emotional issues like anxiety, depression, and obesity. They are often lonely and their lives are dictated by others.

A big part of the problem is the lack of commitment in the industry to measuring consistent and relevant long-term outcomes of intervention. This provides a real opportunity to investors and entrepreneurs who seek to enter an industry for social as well as financial gain. A few large providers committed to long-horizon outcomes standardized across the field could alter the delivery of services for the benefit of over three million people with autism currently receiving services.

The revolution I am suggesting will take the expertise of many; a willingness to hold ourselves accountable and be held accountable by payers; dedication to a long, arduous process of developing and sharing relevant measures; and, frankly the clout that major investors and large service providers can bring. But the rewards would be immense. Better service and meaningful long-term outcomes yield lower costs ultimately,  growth and higher return on investment, as well as improved lives for people with autism and their caregivers.

The opportunity exists right now for service providers to differentiate themselves by attending to understanding the long-term outcomes and utility of today’s services. With the current frenzy of investment activity, the landscape is changing faster than ever. We risk having our mission and service delivery commitment dictated by individuals outside the service provider community if we do not pay attention the our science, our practice and how we are impacting the lives of these autistic individuals and their families.

For further reading on how you can make an impact and change lives, check out my book, Autism Matters.

investment

A Social Impact Through Investment in Autism Services  

An imperative for many investors today is to do good as they do well. Socially conscious investment is fueling many sectors of the economy, from alternative energy to continuum of care communities by combining the best of the head and the heart. Savvy investors provide their business acumen and management expertise to help these industries prosper.

Investing in autism services offers a tremendous opportunity to earn a significant return on investment, both financially and socially. There is a global need for autism services that is growing rapidly and has the potential to transform people’s lives. Socially conscious investors will find an industry that is not well-understood or capitalized and is ripe for new, more collaborative business approaches.

I believe that autism services are ripe for behavioral healthcare companies that have a heart for helping and the entrepreneurial spirit that drives business innovation.

The autism services sector needs more of these investors and the clients of these services would benefit from improved business practices in the field. More investment will create more trained professionals and increase the number of service providers. More providers will be able to help more individuals and better prepare more schools to work with children with autism.

 

The Need for Standardized Outcomes
A critical need in autism services is for standardization in measurement across the industry. Currently, data collection and analysis is random and inconsistent, and outcomes are starting to be defined by insurance companies rather than by clinicians. This is a dangerous path that does not bode well for clients of autism services.

If instead, new investors brought additional resources and their sophisticated business minds to the sector, they could professionalize its business practices. Almost certainly this would include development of standardized outcome measurements across the industry. In this way, greater capital investment can change the entire landscape for individuals living with autism and their families.

 

Profit and Care Can Live in Harmony
There are those who believe that the rush for profits is incompatible with compassionate patient care. In practice, there are certainly those organizations that have lost sight of the delicate balance in a greedy headlong rush. But the reverse is a problem too: any company that fails to apply the best business practices will either cease to exist or limp along providing second rate services to their clients.

The free marketplace is an adept Darwinist, dispatching those outfits that fail to keep up with business innovations and punishing those that provide poor customer service.

Enlightened self-interest is another driver of wise investment in autism services. The autism diagnosis has exploded in the last couple of decades – one in 59 children born today is diagnosed along the spectrum – and the cost to society to support an autistic individual across their lifetime is somewhere in the vicinity of $2-3 million. A 2014 study found the total cost of autism in the U.S. alone is roughly a quarter of a trillion dollars. This burden is borne by each of us.

 

As a consultant to private equity firms and companies in the behavioral healthcare marketplace, I am a firm believer in financial and social ROI. Good business can improve the quality of people’s lives and strong results are good for business. It’s why I’ve committed my company, Empowering Synergy to that exact mission.

Autism services

Compassion and Understanding Should Always Inform Therapy

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.

Better outcomes

Better Funding Through Meaningful and Standardized Outcomes

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.