Adults With Autism—A Growing Population & Opportunity

December 26th, 2018

Earlier this year, the new autism prevalence estimates came out from the Centers for Disease Control and Prevention (CDC)—1 in 59 children are estimated to have autism spectrum disorder (ASD) according to the CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network, up from previous estimates of 1 in 68 in 2014 (see 1.7% Of U.S. Children Have Autism Spectrum Disorder, Up 15% From 2012). Autism Population GrowingAccording to one of three U.S. periodic surveys, these prevalence numbers are even higher: with reporting that one in 40 children—or 2.5% (1.5 million) of those between 3 and 17—have autism spectrum disorder (see The Prevalence of Parent-Reported Autism Spectrum Disorder Among US Children).

The statistics around adults with autism often get less press, but are just as important in thinking about the service delivery models and opportunities. A recent report shows that the cumulative incidence of ASD among adults could exceed 2.8% based on an analysis of diagnosis patterns for people born from 1980 through 2012 (see Future Cumulative Population Incidence Of Autism Could Exceed 2.8%). What does this mean? Soon, two or three out of every 100 adults in any community could be affected by ASD.

What do we know about the half a million children with ASD that are aging into the adult system (see 500,000 Youth With Autism Will Enter Adulthood By 2025)? First, approximately 95% of this population has at least one common co-occurring condition, including the 53% of those with attention deficit disorder (ADD), the 51% with anxiety, and the 25% with depression (see 95% Of Children With Autism Have At Least One Common Co-Occurring Condition). Of these, at least 60% will have two comorbid conditions such as sleep disorders, seizure disorders, intellectual disability, and gastrointestinal disorders.

For anyone who reads these prevalence numbers, the question is, how does the service delivery system need to adapt to accommodate this growing population—and what are the opportunities for specialty provider organizations in this changing environment? I recently posed those questions to Lora Perry, OPEN MINDS subject matter expert. She writes that the increase in adults will present the service system with individuals who need more advanced services for interacting with other people, and navigating the community:

Lora Perry
Lora Perry

The plight of children is hard to resist, and the data encouraged professionals and families to develop a continuum of services for these children. Today, it is a rare community that cannot offer evidence-based, data-driven services for young children with autism.

But the challenge for provider organizations is to hire and develop professionals with training and experience to serve the needs of individuals with autism throughout their lifespans. People with autism spectrum disorders will increasingly be a part of our adult communities. They need to be taught to drive cars, to care for homes, and to succeed in work environments that prize high “EQ” [emotional intelligence] workers.

And, the population profile of people “on the spectrum” is changing significantly. The biggest change I see in my practice is that more individuals with autism today have the gift of language. Language complicates things considerably. The emphasis shifts from helping children acquire the ability to communicate—to gain language—to the treatment of symptoms in older individuals.

How does the adult population receive coverage for the services they need? While many states have mandated the coverage of services for children with autism, when those children transition to adults, the coverage becomes sparse. These consumers may have access to Medicaid if their condition is severe enough that they can’t work, and then they will most likely qualify for long-term services and supports (LTSS). On the commercial side, insurance is available but consumers will get no special services, which will be limited to less severe conditions.

The opportunity for provider organizations is to build specialized services for adults with autism that fit into the current payer care continuum—similar to specialized care coordination models and specialized primary care services (see Living In The Community-The Landscape For Adults With I/DD ). These specialized services will likely be more expensive, which means that the challenge will be to demonstrate the cost effectiveness of these specialized approaches in improving the health status (and reducing overall health care costs) of adults with autism.

For more, check out these resources in the OPEN MINDS Circle Library:

  1. Autism Rates & Autism Costs-A Future View
  2. New Opportunities Serving Adults With Autism
  3. Medicaid Cost For Autism – The Impact Of Special Education Funds
  4. For I/DD, The Question Isn’t Managed Care Or Not-It’s Residential Care Or Not
  5. Finding The Opportunities In Serving The 1 In 68
  6. NeuroPointDX Launches Autism Blood Test For Young Children
  7. Children With Autism, Developmental Delays Nearly 50% More Likely To Be Overweight, Obese
  8. Australia Releases New National Guideline For Autism Diagnosis
  9. The Tech-Enabled Home: The Faison Center Model
  10. Baker Victory Services Launches New York’s First I/DD & Mental Health Intensive Treatment Program

For more, market your calendars now for the The 2019 OPEN MINDS Strategy & Innovation Institute, where OPEN MINDS Senior Associate Ray Wolfe, J.D. will present the session, “Self-Determination In The I/DD Market: Keys To Incorporating Consumer-Directed Care Into Your Services.”

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