This past March, it became clearer than ever that the scope of autism is changing. With new estimates from the Centers for Disease Control and Prevention (CDC) identifying that 1 in 68 children in the U.S. are now affected by autism, a nationwide conversation ignited on how to address the pervasiveness of a disorder with no verified cause and no known cure.
Of course, this same conversation has long been going on within the autism community, where prevalence exists not as statistics, but as people—more specifically, our children, our students and our patients. Though autism is the fastest-growing developmental disability in the U.S., it currently receives about 5 percent of the research funding of many less prevalent childhood diseases (Autism Speaks, n.d.).
The simple logistical demands of obtaining autism treatment are astounding, particularly for working parents: more than 50 percent of caregivers report the need to reduce or stop work entirely, while more than 25 percent report spending more than 10 hours a week to provide or coordinate special care for their child (Kogan, Strickland, Blumberg, Singh, Perrin & van Dyck, 2008). Another 33 percent of caregivers report financial burdens related to autism health care costs—in fact, working mothers forfeit anywhere from $3,000 to $5,000 in lost productivity each year (Rich, 2011). When you consider that autism costs families an annual average of $60,000 (Autism Speaks, n.d.), any reduction in income can be devastating to both the continuation of treatment and the family budget as a whole.
Even caregivers insecure financial situations encounter enormous psychological demands. Families of children with autism experience significant levels of stress and exhaustion, incur more parental medical issues and expenses (Rich, 2011), and have higher rates of divorce.
Autism has remained a challenge for families largely because the quality of autism assessment and diagnosis is extremely variable and often poor, while the quality of autism treatment is often non-specific and ineffective. So how are we working to change this?
Modifications in Autism Diagnosis
One of the major concerns of autism treatment has been in ensuring treatment is accurate from the onset, which means examining our historical diagnosis of autism and adapting it to present day needs.
Previously, patients would have received an individual autism-related diagnosis—autistic disorder, Asperger’s disorder, childhood disintegrative disorder or pervasive developmental disorder—but researchers found these diagnoses were inconsistently interpreted and applied. For some patients, this resulted in a less clear understanding of the individual case, and ultimately, a less effective treatment plan.
The American Psychiatric Association (APA) addressed these concerns with the latest update of the Diagnostic and Statistical Manual of Mental Disorders, DSM-5, by rolling these individual disorders into a single diagnosis called autism spectrum disorder (ASD). This modification is meant to provide patients with a more consistent—and in some cases, an earlier—diagnosis. As the ASD diagnosis includes original significant diagnostic criteria, children identified with an autism disorder before the introduction of DSM-5 will not need to be reevaluated unless there is a determined clinical need.
An ASD diagnosis now requires deficits in two core domains: social communication and interaction (a lack of interest in peers, for instance, or difficulty displaying nonverbal communication cues such as facial expressions); and restricted, repetitive behavior patterns (such as developing an inflexible routine, or responding adversely to certain materials or sounds). As autism-related symptoms vary in intensity from person to person, ASD is classified into three levels of severity based on the amount of required support.
Additionally, DSM-5 also introduced the diagnosis of social pragmatic communication disorder, which is given to children who experience difficulties in social communication and interactions, but who do not display the restricted and repetitive behavior patterns associated with autism. While not included under the ASD diagnosis, autism treatment techniques are oftentimes beneficial for children diagnosed with social pragmatic communication disorder.
The impact of DSM-5 on the diagnosis of autism remains closely monitored, particularly in relation to how it might influence autism’s rising prevalence.
As we continue to strive for a better understanding of autism and how to address it, we know that early and sustained intervention programs currently offer the best hope of improving outcomes for individuals experiencing the disorder.
Over the past several decades, applied behavior analysis (ABA) has steadily gained acceptance for its substantial clinical research and documented effectiveness in improving the developmental challenges often present with autism, and has been endorsed by several state and federal agencies, including the American Psychological Association, the National Institute of Mental Health, and by the U.S. Surgeon General.
ABA treatment methods are designed to modify behaviors by observing and addressing the environment in which a particular behavior takes place, and by using positive reinforcement to strengthen various social and developmental skills. Under the direct supervision of a trained ABA professional, clients typically receive anywhere between 10-25 hours of treatment per week or 26-40 hours if more intensive treatment is required. Treatment hours are increased or decreased according to the client’s progress.
Treatment plans address behavioral and developmental goals specific to the unique needs and abilities of the client, and may include targets such as hygiene, compliance with medical and dental procedures, positive participation in family and community events, or reducing the occurrence of inappropriate speech and physical aggression. Additionally, caregivers are trained on how to promote their child’s optimal functioning and behavior outside of a therapy setting.
Studies have shown that ABA therapy techniques produce significant developmental improvements for persons with autism regardless of age, cognitive level or co-occurring conditions, and that children who participate in a meaningful ABA program exhibit greater adaptability, engagement and aptitude—both in the classroom and in the world at large.
Though many children benefit from ABA treatment, obtaining coverage for it still remains a challenge for many families. Presently, 37 states have enacted autism insurance reform laws mandating coverage of autism treatment services for state-regulated insurance plans. However, some state mandates define ASD and ABA as behavioral health benefits, and impose age limits on treatment and monetary caps on autism therapies. The impact of the mental health parity law on these caps is uncertain, and the interpretation by state regulators may vary state by state.
Even the autism community is divided on the approach to legislation. As of this writing, a debate is stirring on Capitol Hill over the renewal of the Combating Autism Act, which is set to expire in September. Advocates of the legislation’s renewal argue that since its enactment in 2006, the act has provided more than a billion dollars of funding for programs and research, and has increased both awareness and treatment options for autism. Meanwhile, opponents of the renewal believe that current legislation has been largely ineffective, and are calling for a total overhaul of the program rather than allocating millions in additional funding.
As the push continues for effective legislation and expanded coverage options, we continue to promote the benefits of ABA treatment, particularly as delays in receiving vital developmental services positions children with autism to become reliant on more comprehensive therapy options as they mature into adulthood.
Opening the Door to Treatment
In my work with ValueOptions, a managed behavioral health care company, I frequently present the business case for making autism coverage a standard part of any company health plan. Autism coverage, I explain, should not be viewed as a “perk,” but as a business necessity: with autism rates rising, more employees will require access to treatment options, and businesses that meet this need are positioned to achieve a number of gains.
For one, children who achieve higher levels of functioning have lower overall health care costs (of course, that same argument can be applied to caregivers, who will be less likely to incur the mental and physical health issues as a result of providing non-stop support). Children that are higher functioning also produce better outcomes in school, and require less assistance from their families. This allows employees more time and energy to focus on their work, not to mention a reduction in personal stress, which tends to bleed over into our work relationships. And as vital staff members won’t feel the need to leave for a job that does offer autism coverage, companies can expect to maximize employee retention.
Though the number of children and families facing autism has grown, so has our understanding of the disorder and its challenges. As growing demand delivers improved assessments and better access to high-quality treatment services—and we are working to make sure it will—more children will benefit, and families can spend their time together enjoying life rather than fighting to ensure the quality of it.
Christopher Dennis, MD, MBA, FAPA is Chief Medical Officer of ValueOptions’ Commercial Division, a Fellow of the American Psychiatric Association and an assistant professor at St. George’s University AIM.
Facts about Autism. (n.d.). Autism Speaks. Retrieved May 6, 2014, from http://www.autismspeaks.org/what-autism/facts-about-autism
Kogan, M. D., Strickland, B. B., Blumberg, S. J., Singh, G. K., Perrin, J. M. & van Dyck, P. C. (2008). A National Profile Of The Health Care Experiences And Family Impact Of Autism Spectrum Disorder Among Children In The United States, 2005-2006. Pediatrics, 122(6), pp. e1149-e1158. DOI 10.1542/peds.2008-1057.
Rich, P. (2011). Helping Employees who have Children with Special Health Care Needs: Tips for Employers. Retrieved May 20, 2014, from http://www.businessgrouphealth.org/pub/f315390e-2354-d714-51e1-cb8909abdf44