A Call to Investors Why Autism Services Needs Investment

A Call to Investors: Why Autism Services Needs Investment

By Dr. Ronit Molko

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 to 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.

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. 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.
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.