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.

investors

A Call to Investors: Why Autism Services Needs Investment

Several factors make autism services not just a favorable investment, but one with significant social impact.

In the past five years, private equity investors have been taking a particularly strong interest in the field of autism services. That has led to many autism services companies being acquired or receiving capital from investors.

But what exactly makes the autism services field so attractive to investors?

 

Prevalence

The CDC estimates that 1 in 59 children born in the United States will be diagnosed with autism spectrum disorder. That’s an increase from 1 in 88 as of 2010, and 1 in 68 as of 2014. When I first entered the field, that number was significantly lower, with only 4.5 of every 10,000 children diagnosed with autism.

The cause of that rise in prevalence is still undetermined, however, many researchers suspect that a portion of the increase is due to a broader definition of autism spectrum disorder (ASD) and better efforts at diagnosis. In addition, minority groups have historically had significantly less access to resources and therefore the prevalence in those groups remains under-identified and as a result, we will likely see changes in prevalence in the future. Regardless of the cause, the rapidly growing population of children diagnosed with autism will drive a sharp increase in demand for autism services for the foreseeable future. 

 

Adult Services

Currently, the majority of autism services are aimed at children. This is because early intervention is crucial when it comes developing skills autistic individuals need to navigate the world and take care of themselves. It is also imperative to start intervention early, as therapy is most effective when the brain is still in development.

A study from the International Society of Autism Research recently demonstrated that 80% of autistic individuals continue to require support, services, and supervision into adulthood. Adults with autism have challenges and roadblocks when it comes to finding employment, living independently, and forming interpersonal relationships.

Currently, only 10% of adults with autism live in independent homes[1]. Nearly half (49%) live with a parent or relative. That means there is a large segment of the autistic population who are adults living under the care and supervision of their elders. Someday, the family members caring for these individuals will no longer be there. This means there will be a considerable demand for adult services in the near future. Something the market is currently not adequately providing.

 

A Fragmented Market

The autism services landscape is highly fragmented. The market is mostly comprised of small providers that are founder operated and cover limited geographic locations. There exists a great potential for consolidation. With investors leading the way, service providers can be scaled, and more national players can emerge, especially now that legislation has created more readily available funding for autism services.

 

Trends in Reimbursement and Funding

Autism services is an industry dependent on third party funding: individuals with autism are typically not the parties responsible for primary payment. Thankfully, 46 states at D.C. now have legislation requiring insurers to cover autism services. That’s up from 32 states just five years ago!

The Affordable Care Act (which remains law despite political posturing) also makes it illegal for insurance companies to deny, limit, exclude or charge more for coverage for individuals with pre-existing conditions. That means individuals with autism cannot be denied coverage for services.

 

Social Impact

While securing a strong return on investment has to be a priority for any investor, today many investors are also considering the social impact of their investment choices. A more conscious capital investment mentality looks to produce economic growth and foster social progress. For such individuals, autism services provide a very favorable opportunity for financial gains with the added benefit of empowering a disadvantaged segment of the population in need of significant support and opportunity.

 

 

 

 

[1] Roux, Anne M., Rast, Jessica E., Anderson, Kristy A., and Shattuck, Paul T. National Autism Indicators Report: Developmental Disability Services and Outcomes in Adulthood. Philadelphia, PA: Life Course Outcomes Program, A.J. Drexel Autism Institute, Drexel University, 2017.