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What is Covered? The Insurance Landscape for Autism Services

In today’s health care ecosystem, the availability and quality of a field of services are dependent on insurance coverage. In the world of autism services, the tableau of insurance coverage is decidedly mixed.

Children with autism spectrum disorders are generally covered by health insurance for services they require, but not universally. All but two states require private health insurance to cover autism services. Other states may require limited coverage under mental health provisions. Federal employee health benefit plans cover ABA with prior approval and certain restrictions.

ABA is a critical piece

Because early intervention ABA programs are critical to successful treatment, this might sound like good news, and it generally is. Insurance coverage provides access to treatment for many families who could not otherwise afford it.

But it is a qualified success.

There are two major issues with insurance coverage for autism services. One is the amount or intensity of services funded. The other is quality.

As a group of genetic neurodevelopmental disorders, autism is not something to be “cured.” Treatment is optimal when it is intensive and sustained over many years. The best treatments available for those on the autism spectrum are rooted in the science of applied behavior analysis (ABA), a mostly one-on-one treatment approach based on understanding behaviors and how they are affected by the environment. ABA therapy is costly—though foregoing ABA therapy is far more expensive in the long run.

On average, ABA therapy costs $17,000 annually for a child on the autism spectrum, according to the Centers for Disease Control. For many individuals, this number is closer to $45,000-$100,000 annually. Many states mandate private insurance cover up to $36,000, with some as much as $50,000 annually. But others don’t.

The impact of insurers

Even when coverage is mandated, that may not be a panacea. One private insurer, with whom I have had numerous frustrating conversations, reimburses at rates no provider can accommodate without significantly reducing quality and hiring interventionists who are not well-trained. The rates are fabricated on minimum wage pay as a baseline, precluding the necessary growth of clinical skills in technicians and advanced educational training, not to mention any ability to invest in recruitment and retention of talent.  At this wage level, service providers are competing with companies such as Walmart or Starbucks for skilled ABA behavior technicians whose work with vulnerable children requires many hours of ongoing training and supervision to meet quality standards. This is not an easy job, often requiring many hours of commuting between clients’ homes and management of complex family issues.

What we are left with are employees paid as if they are unskilled and fungible while tasked with building the brains of our precious children, teaching them the skills critical to communicate, learn, and become functioning, independent adults.

Even more important is what health insurance covers. As you are likely aware, lacking a consensus in the industry about outcome measurements, insurance companies are stepping into the breach and dictating their own standards. Because insurance companies are just learning about ABA they generally have limited appreciation for the complexity of maintaining a good ABA therapy program, and this is distorting the provision of care.

Cutting corners and thinking short-term

Let’s look at an example. Many programs require providers to demonstrate short-term outcomes, such as whether a child can respond to their name, often ignoring long-term goals such as developing the skills to care for themselves as an adult. Insurance companies have a short time horizon because they are not likely to provide coverage beyond age 18. Their entire worldview with respect to children with ASD is narrowly focused on childhood. Not surprisingly, recent studies of adults with autism have revealed a distressing lack of personal independence and quality of life.

A recent court case against United Healthcare illustrates the issues our industry has with insurance. A U.S. District Court judge ruled the company adopted coverage guidelines for people with disabilities that focused more on its bottom line than on patient care.

The subject concerns all of us; not just those connected to people with autism. Many people on the autism spectrum have spectacular neurodevelopmental assets in addition to their deficits, and that potential is being wasted. In addition, each child with autism whose treatment fails to prepare them to achieve any kind of self-reliance as an adult will continue costing families and society between $1.4 million and $3.2 million over their lifetime. It is an immense waste of human potential, both financial and otherwise, and we all pay the cost.

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Light It Up Blue for Boys, But Don’t Forget the Girls

Why do we Light It Up Blue? For years, prevalence data in the field of autism held that the condition primarily affects boys, by ratios described as four or five to one generally and up to 10-1 among those without intellectual handicaps.

Indeed, in the early days of identifying autism and Asperger’s Syndrome,  autism was described as “an extreme form of maleness.” Active British psychologist Simon Baron-Cohen theorizes that autism may be caused in part by exposure to high levels of testosterone in the womb. Although no one has definitively identified autism’s roots, there has been a general consensus that boys require a smaller amount of exposure to whatever the cause than girls do to inspire a diagnosis.

Symptoms are more subtle in girls

The result is that in the world of autism, girls often get lost in the shuffle. Diagnostic criteria for autism are disproportionately based on characteristics in boys, potentially revealing a point of bias between diagnosing the two sexes. Not surprisingly, it takes longer to diagnose girls, even compared to boys with the same severity of autism.

Autism symptoms may be subtler in girls than in boys, and girls may be more adept at masking them than boys. Research suggests that girls are able to study people and their behavior, and learn social rules through observation more easily than boys, thereby camouflaging their autism because they mimic socially acceptable interactions.

Researcher Somer Bishop of UCSF describes an encounter with a seemingly well-socialized girl who shook her hand, complimented her outfit and answered her questions. It wasn’t until a second encounter when the conversation was repeated nearly word-for-word, that Dr. Bishop realized the girl had simply practiced a set of neurotypical responses. The result may be that many autistic girls fly under the clinical radar.

Viewing autism through a male prism

Indeed, a 2014 study found “higher functioning” autistic girls tend to have fewer social impairments than boys do—just as neurotypical girls tend to be better socialized than neurotypical boys. Indeed, neurological testing has found that the brains of females with autism tend to look like those of typically developing males of the same age, with reduced activity in regions of the brain normally associated with socialization.

It’s clear now why we Light It Up Blue, and regardless of the complicated history of autism diagnoses, the tradition is worthwhile. However, viewing autism through a male prism has complicated the diagnostic process for girls and resulted in misdiagnosis and underdiagnosis. By definition, no one knows the exact scope of the issue, but it does call into question the long-held wisdom that autistic boys outnumber girls by four or five to one. The reality is that the ratio is likely much closer to 2:1 or an even 1:1, but because girls are often diagnosed with eating disorders or anxiety disorders when the root cause is actually autism, we see diagnostic numbers skew towards boys.

Why is this significant? Among the challenges facing individuals with autism is naivete about people being dishonest with them and difficulty recognizing social cues, often leading women with autism into abusive and dangerous situations. Almost every autistic woman I have interviewed has shared a story of finding herself in a compromised position, often with a traumatic outcome. Misdiagnosing girls with autism means we fail to teach them the social skills they need to navigate the world.

Some in the autism community suggest that clinicians apply sex-specific norms when diagnosing autism, to better define what autism looks like in girls. While we certainly should Light It Up Blue this month, it is pretty clear that much more distaff-focused research needs to be done, and clinicians need to be on the alert for subtle signs of the condition in girls.

Further reading on issues shaping autism services can be found in my book, Autism Matters: Empowering Investors, Providers, and the Autism Community to Advance Autism Services

Measure What Matters: Redefining Neurotypical Intelligence Standards for Autistic Individuals

Man Hands Holding A White Paper Sheet With Two Faced Head Over A

I’ve written previously about how we misunderstand the intelligence of people on the autism spectrum. We evaluate their intelligence with tests and observations that measure a narrow slice of the intelligence continuum and then judge them by their ability to socialize with us.

Neurotypical vs. Autistic Culture
Neurotypical people—a term for individuals without autism coined by people with autism—living in a neurotypical world, consider our present culture and socialization methods to be “correct,” and never pause to think how woefully we socialize with autistic people based on those standards. For example, we may become flustered while conversing with an autistic person when they fail to make eye contact with us. They might just as easily perceive us as poorly socialized when we insist on staring at them during a conversation.

Neither group is wrong; we’re just different. In order to better help autistic people navigate the neurotypical world, perhaps we ought to re-shape parts of that world to conform to their differences. This is precisely what we’re doing when we build ramps for people in wheelchairs or post signs in other languages for foreign visitors.

I’ve spoken about this at length with Dr. Sue Fletcher-Watson, a Chancellor’s Fellow at the University of Edinburgh’s Centre for Clinical Brain Sciences. She has done significant research on intelligence and socialization of individuals on the autism spectrum. Her conclusions reverberate with me and my experiences in the field.

Some Simple Adjustments
An autistic friend visited Dr. Fletcher-Watson for dinner and asked in advance what time she should leave. She knew that she would not be able to read the subtle cues neurotypical people understand as indicating it is time to go. Armed in advance with a time to leave, her departure avoided the awkwardness that might otherwise have ensued.

Dr. Fletcher-Watson has proposed involving autistic people in designing environments for others like them. She is also developing peer support models that match newly-diagnosed autistic adults with those who have learned how to accommodate their autism to the neurotypical world and pairing parents of autistic children with autistic adults.

Dr. Fletcher-Watson described for me how that might work: “Just imagine having an autistic guy come ’round and look in your house and say, ‘The hum from your fridge is very loud for me, so maybe you can find a way to make that quieter.’ Or, ‘These lights are very harsh.’ Or, you know, ‘This fabric feels uncomfortable.’ Articulating all of those things that maybe a child would not be able to articulate.”

Let’s Measure What Matters
Greater dedication to the real-world needs of autistic people might lead us to a different set of metrics. Maybe reading and writing aren’t nearly as important for some autistic people’s ability to function in the world as other skills and areas of learning. For example, a young man I know runs a food delivery business. He takes orders from various companies, reliably gets the orders right and makes correct change, and generally possesses the skills necessary to complete the job.

As a boy, he was removed from public school because of his behavioral issues. When his parents brought him home, they eliminated many of the sensory inputs in his home environment and were able to foster his learning and independence through different therapeutic approaches. Now, with a little support and mentoring, he has a job, a girlfriend, a roommate, and a self-determined life. Maybe he can’t check all the right the boxes on an assessment test of skills that measure standard conceptions of intelligence, but he is functioning well in the neurotypical world.

A more strategic approach to analyzing how we measure success for individuals with autism is indicated, to replace the rudimentary box-checking now in place. It must take into account real-world skills that accrue to the long-term benefit of those affected. Accomplishing this would be one small but significant step forward in their care and education.


You can find further reading on this and other subjects in autism services in my book, Autism Matters.