The High Costs of Autism

Autism was a word barely known 20 years ago, with America’s only real reference an award-winning performance of an “idiot savant” in Rain Man. Projection rates and real calculations vary, but the Autism and Developmental Disabilities Network reveals a startling 78% increase in autism spectrum disorder (ASD) diagnoses between 2002 and 2008 alone. The cost of autism is high, with economic costs falling in separate categories of direct, indirect, and intangible.

There is no question that early intervention in ASD cases has proven beneficial to the child’s quality of life. There is also no question that resources are needed for an epidemic that may cost America $461 billion dollars annually by the year 2025. There are no preventative measures for autism as the exact cause remains unknown. The question is thus: is the high price tag of early intervention, evidence-based practice treatment, and continuing care worth the outcome? Will the autistic children of today become the college students of tomorrow? And if the outcome is worth the investment, what are the best and most cost-effective means of treatment?

To understand how costs are estimated, one must first look at the different types of costs involved. Performing the calculations for the cost of autism is not an exact science. There are direct costs that may be attributed directly to the autism disorder itself. To further muddy the situation, these direct costs may be the burden of society and government, but in many cases costs are also a burden on the child’s family. Direct costs are tangible, exact costs for inpatient treatment and related services, medications, outpatient providers, and similar expenses. With little margin of error, these expenses are tabulated and fairly exact.

When it comes to indirect costs, the economic burden expands even farther. These costs can be estimated but not completely quantified. A good example of an indirect cost would be the parent who must end or limit employment in order to be a full-time caregiver to a child with ASD. Indirect costs can also apply to the child or patient as well. An adult with autism may be less productive at their place of employment. Perhaps they cannot secure gainful employment at all.

These indirect costs can also affect society as a whole, treated as an overall loss of productivity. Many of these indirect costs fall under the umbrella of opportunity cost. A topic well discussed in every entry-level macroeconomics class, opportunity cost with regard to autism, according to Martin Knapp, is described as ” [the representation of] opportunities lost or forgone, in this case including the opportunity to earn an income from employment.”

The crippling effect that autism has on both the individual and the family should not be overlooked when it comes to economic burden. The last type of costs evaluated are intangible. These costs deal mainly with quality of life issues. For instance, it is nearly impossible to calculate the cost to the individual himself if his quality of life is forever poor due to lack of treatment or ineffective treatment, but it is a serious cost nonetheless. A high quality of life for the individual may come with a trade-off, such as the burden of more direct costs.

How much does autism cost in total?
A fairly recent report (Mandell, 2012) estimates that direct and indirect costs for autism per individual (lifetime) were $1.4 million per person. If we are discussing a child who has autism comorbid with intellectual disability (ID), costs skyrocket to $2.3 million over a child’s lifetime. The majority of the costs calculated here included special education through schools, intervention services, residential costs and placement, and day care.

If we are discussing additional costs for the family, a 2014 study estimates that additional out-of-pocket costs for the family are $17,000 per year per child. The amount of $17,000 per year is roughly equal to an adult working 40 hours per week at $8.14 per hour.

The federal minimum wage in the United States is $7.25 as of 2018. Now, let’s revisit the fact that parents of autistic children may not be able to work a 40-hour week in order to provide care for their child. The burden on the family is astronomical.

Economic facts and figures are moot if autism outcomes are not discussed. Mid-20th-century autism outcomes generally had a range of poor to very poor. Autism was not understood and was not studied until Leo Kramer studied 11 autistic children in 1943. In 1971, he followed up with each child, reporting that only two had had mild success. The 1970s, 1980s, and early 1990s did not see much in the way of autism advancement or understanding.

In the early 2000s, diagnostic parameters began to change, measuring observable, reliable measures such as social skills, friendships, and living at home or. Also in the 2000s, researchers began to measure the interaction between the autistic person and his environment. When measuring outcomes, it is important to remember that positive outcomes are subjective. An autistic adult may be very content having a part-time job, the ability to provide his own adequate self-care, and living at home with his family. While to the rest of the world this may not measure as “successful,” the person in question’s quality of life may be satisfactory—or even well above adequate. This is, perhaps, an example of success.

How can we adequately compare costs and outcome to determine if the investment is worthwhile?
Economist Martin Knapp suggests measuring the trade-off by using the incremental cost-effectiveness ratio (ICER). Using this measure, one would take the cost for each type of treatment and divide it by the treatment’s outcome. To determine cost-effectiveness, the benefit of the outcome must be estimated.

What is the monetary benefit of ordering extra speech therapy to procure expressive language? What is the outcome if Applied Behavioral Analysis (ABA) is ordered, improving a child’s behavior and social interaction with peers? One would assume that spoken language would lead to better quality of life and eventual employment. Or, that a well-behaved child becomes a well-behaved teenager, who becomes a well-behaved adult that avoids the legal system. A cost consequences analysis can also be a unit of measurement, but it can also confuse the situation.

There is no known “cure” for autism, whether it be cognitively-based therapies or pharmacology. As of 2018, finding the right therapy or medication to ease troublesome hallmarks of autism is the only option. Autism is also on the rise.

The most recent statistics (2014; published in 2018) estimate that 1 in 58 children are born with autism. This particular study, funded by the Centers for Disease Control (CDC) through the Autism and Developmental Disabilities Monitoring (ADDM) Network, focused solely on 8-year olds. In the 1980s, autism was estimated to be in 1 in every 10,000 births; in the 1990s, it was estimated at both 1 in 2,500 and 1 in 1,000 later in the decade. Comparison is problematic, as diagnosis depends solely on the guidelines printed in American Psychiatric Association’s Diagnostic and Statistical Manual (DSM), which has been wildly rewritten over the years.

However, there is little to no argument that the prevalence of autism is growing. This equates to a problem that cannot be ignored. If autism continues to grow in number, by 2025 statistics indicate that the costs of autism will outweigh those of diabetes with total costs in the United States to be roughly $461 billion.

Certain types of therapies also appear to be more beneficial than others. Because autism is a spectrum, there is no one therapy that will help in all cases. However, evidence-based therapies with known positive outcomes are preferred. Applied Behavioral Analysis (ABA) and its counterpart for younger children, Early Intensive Behavioral Intervention (EIBI) are both individualized, effective treatments.

ABA has many facets with regard to behavior, but it also has a deeper, more profound effect on autistic children when imposed properly, crossing and opening up multiple pathways and lines of communication. This not only helps a child mainstream, but achieves the greater goal, which is quality of life for present and future. Fundamentally, there is more empirical evidence backing ABA currently than any other treatment and it is advised as a first-line treatment for any child on the autism spectrum.

In a very moving presentation delivered at the Innovations in Autism Treatment and Applied Behavior Analysis conference in April 2009, parent and advocate Mary Beth Walsh outlined many reasons that autistic children should be offered ABA. One of the many justifications she mentioned presents the concern that at some point, an autistic child will be on his own. His parents will die. This is the nature of life. She says, “We must make sure our kids learn the skills they need to be as independent as possible as adults and as connected to their families and their communities in healthy ways as possible,” citing ABA as the most effective therapy for this job.

So, what should happen?
The high cost of autism is astounding, and it is compounding with the increase in prevalence. This not only affects the United States, but every country in the world. Ignoring the problem will not diminish the cost; it will only add to it. Therefore, refusing treatment is not an option. Effective screening should be offered to parents of infant children, with an easier road to diagnosis and treatment. Treatment must be streamlined to the individual with autism and must be specialized. One of the most empirical ways to do this is to implement therapies that are evidence-based and proven effective, such as ABA and EIBI.

Parents of autistic children and young adults also need assistance in the manner of grief counselling, stress relief, and parental advocacy and education. Parents need to be not only well-educated and well-versed with the myriad aspects of autism, but also with navigating the circuitry of services and treatment and the education system. Parents should be provided with a licensed social worker and/or advocate. Therapy should not end at 18. For those autistic teenagers who decide to go onto higher learning, ABA (or the therapy of choice) must be provided throughout their higher education.

Further social skills and preparation for employment interviews and training should be implemented. For the adults who have already seemingly fallen through the cracks, adult diagnosis should be offered with access to the same therapies as younger peers. Individualized preparatory job training is imperative for the autistic individual, with the hope that such training will give him a better outcome in the retention of employment.

It is the hope of this paper that if these measures are implemented, the overall cost of autism will decrease. While it would be a feat to diminish direct costs, indirect costs and intangible costs would foreseeably lessen, with the most important aspect being the outcome of a better quality of life for individuals who have a diagnosis on the autism spectrum.

From PatientNextDoor Editorial Team
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