Health, Wellness and the Adult with Autism
First published on January 16, 2012.
These days, when one hears “Healthcare,” political strife is often the first thing that comes to mind. As a nation, we are concerned about making quality healthcare accessible and affordable. What most people discover is that managing changing health issues over a lifespan is ultimately left to the individual patient, regardless of who is paying the bills. For families with an autistic member, managing health and wellness can be doubly difficult. Parents of teens or young adults with ASD are inevitably faced with their own decline in health in addition to the ongoing care of their adult child. Fostering independence in this area can provide some relief, but there is much to consider when building the skill set necessary to enable the ASD patient to become an active participant in overseeing personal mental and physical well-being over the course of a lifetime.
Comorbidity is the simultaneous occurrence of two or more independent clinical diagnoses. When comorbidity occurs, it can become necessary to treat both conditions. Utilizing multiple interventions can be problematic for a host of reasons, not the least of which is the subsequent difficulty in determining the efficacy of any one treatment. Typical conditions often diagnosed with ASD include, but are not limited to:
- Nonverbal Learning Disorder
- Fragile X Sydrome
- Tourette Syndrome
- Gastrointestinal issues
- Sensory Issues
Often the biggest challenge in accurately diagnosing comorbid conditions is teasing out which symptoms should rightfully be classified under a separate diagnosis, and what is part of the ASD diagnosis itself. (Sally Ozonoff, Professor-in-Residence in the Department of Psychiatry and Behavioral Sciences at UC Davis MIND Institute, provides an overview of the complexities of correct diagnosis in a lecture given at the 2008 Summer Institute on Neurodevelopmental Disorders.) An important consideration to keep in mind when it comes to diagnosis is that while treatment of symptoms may not change, a diagnosis might. The source for clinical diagnosis, “The Diagnostic and Statistical Manual of Mental Disorders” (DSM), is reviewed and revised on an ongoing basis. The new revision, “DSM-V,” is due for publication in May 2013 and is expected to contain changes which will inform the diagnosing of ASD.
Sensory issues that so frequently accompany an ASD diagnosis can make for a picky eater. While this might be combated by the caring persistence of parents and caregivers, as adulthood approaches, so does independence when it comes to food choices. An adult on the autism spectrum may not have the skills necessary to create healthy home-cooked meals. Or perhaps just as likely, may not have the impulse control required to limit the amount of nights per week that the pizza delivery man arrives.
Without establishing healthy eating habits, the adult with ASD could be at risk of obesity. Conversely, there is also a risk of being underweight or undernourished as a result of a limited diet. Eating habits are behavioral in nature, and changing those behaviors is rarely accomplished without support. When you break it down, engaging in healthy eating habits isn’t as simple as it may seem. It takes the acquisition of a variety of skills such as grocery shopping and food preparation, understanding nutrition basics and safe food handling, and utilizing decision-making skills when it comes to determining what's for dinner. Many of us take for granted the multitude of processes we go through every day simply to feed our bodies. A good diet is essential to good health. Developing the skills and habits required to support a good diet should be carefully attended to and forged in such a way that they become the norm rather than a source of constant battle.
Good eating habits aren’t the only healthy habits in need of honing. Exercise and hygiene are also important components of one’s well-being. As healthy eating choices can and should become a habit, so too should physical activity and daily hygiene routines. Healthcare shouldn’t be solely about what to do when one gets sick. Instead, it should be about creating simple habits that stave off illness to begin with.
There is a plethora of medications used to treat autism and comorbid conditions which many patients have found to be enormously beneficial. However, as the ASD child becomes an adult, the question of who will manage medications becomes extremely important, especially given the potential health risk involved in incorrect medication usage. The adult with ASD striving towards independence will need to manage prescription refills and maintain the proper dosing schedule. This may be quite the challenge for someone with an executive function disorder. Depending on the living arrangements, parents may be routinely assisting their child by ensuring refills are available when needed, making appointments with prescribing practitioners when necessary, and prompting for daily dosing routines. This support will eventually need to be transferred to either the adult child or to support staff. This may feel like an enormous leap of faith for many parents.
The proper administration of medications may be a sizable, but not the sole, concern. The long-term side effects of many of the drugs typically prescribed to the ASD population are not always known. For example, antipsychotics are often prescribed to minimize aggression, self-injury, and mood changes. Some of the documented side effects for certain drugs in this category include hyperglycemia, breast milk production, increased level of fats in the blood, and liver problems. While the drugs may be effective in treating the behaviors for which they are prescribed, the resulting side effects such as high cholesterol and lactation may result in the need for additional medications, which in turn can result in additional side effects. Understanding and managing the side effects of medication can be the great unknown. Compounding the difficulty in assessing potential complications is that these drugs are often prescribed “off-label,” which means that the prescription is treating something other than what the drug was primarily developed to do. It then stands to reason that long-term side effects for off-label prescriptions could be underreported. Understanding the interplay between medications and side effects can often allow for better preparation for potential health issues down the road.
In August 2009, Massachusetts General Hospital received $29 million in gift funds for the purpose of creating one of the nation’s first comprehensive programs to provide specialized medical care to adults with autism. The Lurie Center for Autism is under the umbrella of the MassGeneral Hospital for Children. The recent creation of this center indicates, in part, that healthcare practitioners and administrators have only just begun to focus on transition from pediatric care to adult care for the ASD patient. Other nationally known hospitals are announcing centers for pediatric transition of all patients, not specifically those with ASD. While progress has begun, the task of leading the way to healthcare transition is currently in the hands of parents, caregivers and patients. Increasing numbers of practitioners may be developing an understanding of ASD in children, but it is much less likely that an adult primary care staff will have received training regarding autism in adults.
As independence grows, so does the need for certain behaviors necessary for that independence. As a young adult becomes responsible for her own healthcare, it may well be a challenge even to know when to seek medical attention. There may be avoidance behaviors centered around doctor's visits in general. Communication may be an issue as the adult with autism begins to visit health care professionals independently. Additionally, if a doctor writes a prescription, will the patient have the skills necessary to retain that prescription, submit the prescription to a pharmacist, and self-administer the medication as prescribed?
Technology may be one means to help overcome some of the behavior barriers to independent health management. For instance, electronic medical records might limit the need for completing a medical history form. Electronic pillboxes can monitor and prompt dosing schedules. It's even possible for these pillboxes to notify a caregiver by email when a patient has missed a dose. While technology can assist with certain behavioral interventions, it certainly can't solve everything. If a patient doesn't want to go to a doctor, it may well be that nothing can replace good old-fashioned hand-holding.
Funding Wellness and Medical Care
In a study published The Archives of Pediatrics and Adolescent Medicine in 2007, “The Lifetime Distribution of the Incremental Societal Costs of Autism,” author Michael L. Ganz examined the lifespan fiscal impact of autism in the United States. Ganz concluded that:
Although autism is typically thought of as a disorder of childhood, its costs can be felt well into adulthood. The substantial costs resulting from adult care and lost productivity of both individuals with autism and their parents have important implications for those aging members of the baby boom generation approaching retirement, including large financial burdens affecting not only those families but also potentially society in general. These results may imply that physicians and other care professionals should consider recommending that parents of children with autism seek financial counseling to help plan for the transition into adulthood.
The results of Ganz’s study indicate that direct medical costs are estimated to be $305,956 over a 66-year lifespan of an individual with autism. It is well documented that adults with autism earn far less income than the average population. Federal law allows employers to pay disabled employees less than minimum wage, if the disability limits productivity. It's hard to see how someone earning less than minimum wage would be able to afford more than $300,000 in direct medical costs over a lifetime.
If a young adult is covered by a parent's private health insurance policy, it is important to understand the age limitations for dependent coverage. The Patient Protection and Affordable Care Act permits dependent coverage until age 26. What happens when the young adult exceeds the age threshold for dependent coverage? Medicaid is government-funded health insurance for qualifying adults with disabilities and limited financial resources. Medicaid is a combined federal/state benefit, which means that application procedures vary from state to state. It is important to consider Medicaid options well before an autistic adult turns 26, even if a parent’s policy provides coverage. A gap in health insurance for someone with autism could easily become a fiscal nightmare.
Dealing with the administration of health insurance claims is an arduous task for anyone. The challenge of sorting through the red tape and understanding "patient's obligation for payment" grows exponentially when the patient is learning disabled as well. A system for dealing with these and other household administration tasks is a crucial independent living skill. Whether it’s the patient or a trusted caregiver that deals with this paperwork, a succinct “home administration” system and a systematic monitoring of the process by the parent should be well thought out.
The Wisdom of Forethought
There are many factors impacting the health of an adult on the autism spectrum that go far beyond basic diet and exercise concerns most adults face. As parents begin to plan for the inevitability of being unable to care for their children themselves, it is important to assess what healthcare responsibilities are realistic to turn over to the adult ASD patient, and where additional supports will be necessary. Guardianship, housing, and employment issues may all have an influence on health matters as well. As with all things autistic, there is no one answer for all patients. But failure to develop a well thought-out and realistic plan can be a devastating oversight.