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.