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.