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:
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.
Treatments for autism come in all shapes and sizes, and as families well know, what works for one autistic person doesn’t necessarily work for another. Choosing an intervention must be based on an autistic individual’s specific needs and the family’s emotional and fiscal comfort. An increasingly popular choice—which is gaining a greater foothold in the scientific community—is yoga. It doesn’t require expensive medications or time-consuming doctor’s visits. Once learned with the guidance of a specially-trained instructor, it’s a simple movement and breathing activity that researchers say can have far-reaching physical and psychological effects. In fact, a wide range of people on the spectrum can practice yoga, even at home, with limited supervision and with little more than an exercise mat.
Largely in response to parental demand, more yoga teachers than ever before are getting trained to teach classes specifically adapted to students with autism. And in contrast to past years, when most of these students were young tots, yoga-for-autism classes are increasingly geared to older teens and adults. Moreover, there’s a growing recognition that yoga, to be truly effective, must be specifically geared to the unique needs and healing potential of those with ASD, as opposed to a much broader, one-size-fits-all category of “special needs” children with Down’s Syndrome, cerebral palsy, or other developmental disorders.
Not surprisingly perhaps, the pioneers in the burgeoning yoga-autism field tend to be yoga teachers with their own autistic children. Sharon Manner, a 30-year veteran of yoga who’s based in central New Jersey, started working with her autistic daughter, Kerri (now 21) 10 years ago. Like many ASD parents, she was frustrated that Kerri’s doctors had her daughter on several different medications to address sleep, mood, and digestion issues, but despite two hospitalizations, Kerri didn’t seem to be improving much. Manner’s instincts told her that yoga, which focuses on deep breathing techniques to control moods and to quiet the mind, might help. So, after consultation with her fellow yogis, she fashioned a “special” program for Kerri.
Kerri, Manner says, started showing marked improvement after about two years of regular yoga. “She is still on one medication and has a ways to go but she’s on the road to reaching her highest potential,” she says. Manner started by adapting many of yoga’s classical poses, known, as “asanas,” eliminating those that could prove over-stimulating or even dangerous, and focusing instead on yoga’s core breathing exercises (known collectively as pranayama) that help cool down the body’s nervous system, inducing relaxation and stillness, one of the key challenges for those with ASD.
Manner’s success with Kerri quickly led her to consider expanding to other ASD families. With support from her husband, Michael, she set up one of the nation’s first non-profit organization’s focused on autism, Samadhi Sun, which sponsors daily yoga-autism classes at nearby schools and even offers special training workshops for veteran yogis who want to learn how to teach yoga to people with ASD. “Our ultimate goal is to open an ‘ashram’—modeled on a sacred Hindu spiritual refuge—where our beautiful people can work, play and succeed,” she says. Manner’s 45-hour teacher training course is drawing students from around the globe, and not just yogis. Many are occupational and physical therapists as well as psychologists that regularly deal with the ASD community and want to expand their range of healing services.
Manner is not alone in her quest. Three thousand miles away, in San Diego, CA, another veteran yogi, Reegan Lessie, whose brother and sister are autistic, is treading a similar path. She teaches a special program, “Adaptive Yoga for Adults with Autism,” primarily to older teens. In fact, she’s preparing to expand her offerings after being contacted two months ago by a local non-profit organization, Blue Roses Girls, which works with ASD young women ages 10-18. The group offered yoga on a trial basis in its summer camp last July and was so overwhelmed by the positive response from parents and children that it decided to add yoga to its regular curriculum. The Blue Roses program hopes to be up and running next spring, and could involve as many as 30 participants, including parents, which Lessie says will require a major expansion of her teaching staff.
Beyond modifying class design, there can be other challenges that yoga teachers face in adapting to people on the spectrum. Adults are often a bigger challenge than kids, because they are sometimes less open and may become resistant or even angry, especially if placed in the same class with youngsters. Lessie already teaches one older teenager one-on-one at her own home, which doubles as a private yoga studio. Her assistant, Rob Pastor, says it’s a “constant challenge,” and that the student’s father “often seems to get more out of the class than his son does.”
Lessie, though, who has seen yoga work for her own siblings, remains undaunted. “That’s one of the reasons I wanted to do [yoga] with more adults,” she says. “There’s practically nothing out there. It’s mainly all for kids.”
Part of the challenge in creating opportunities for autistic adults to participate in yoga often comes from dwindling emotional and fiscal resources families face. “When the children are younger, their parents have these hopes. They somehow think that if they do just enough, they can still 'fix’ their kids,” she says. “Then, once their kids are older and can fend for themselves, many parents are tired and [may] not have the energy to keep putting forth that [same] effort.”
Another issue is the cost. “Parents are willing to pay anything to help their children, but adults on the spectrum are usually on a tight budget and most likely cannot afford to pay for a yoga class,” she notes.
Manner also sees special challenges in working with adults, but the upside is that those that agree to participate tend to be more serious about the practice, and less easily distracted. Moreover, once they learn yoga and embrace it, they can often internalize it as a coping tool without further supervision. Her daughter Kerri, she says, has learned how to detach from and “bear witness” to her autism and even gives herself spiritual guidance aloud to relieve her stress.
“She’ll say things like ‘Kerri you need to take a deep breath and need to chant Om now.’ Then she’ll lie down and put her hands in mudra [a prayerful hand clasp in front of her heart]. She doesn’t do the sun salutations or other poses but she’s found a way to achieve ‘mindfulness’ for herself, which is the essence of yoga anyway,” Manner notes.
But how do we know if the yoga is actually working as an intervention? Manner and Lessie admit that much of the evidence gathered so far is highly personal and anecdotal, but many school teachers who work with autistic children say that the kids that practice yoga are calmer and more focused in class, which also affects those around them. A more systematic understanding of the impact of yoga on autism—and recommendations for best teaching practices—will depend on the evidence gathered from more scientific research studies, which are just getting underway.
A study currently in progress in Madison, Wisconsin under the auspices of the highly–respected Center for Investigating Healthy Minds (CIHM) hopes to provide the public with the scientifically validated yoga-autism research it’s been looking for. A year ago, the Center contracted with Spectrum Yoga Therapy (SYT), which has pioneered what it calls a “five-pose recipe” for people with ASD. Each pose is geared to relieving stress and pressure in the “autonomic nervous system,” says founder Scott Anderson, who set up SYT eight years ago. It helped that Madison was already one of the nation’s centers for autism research and treatment hubs and offered a progressive and welcoming yoga-friendly community to boot. “It was a natural match,” he says.
Anderson is a big believer in creating a yoga pedagogy that is “easy to teach and easy for students to remember.” He eschews the use of Sanskrit language and Hindu theology, labeling his poses with clever and practical names like “Gravity Juice,” “Supine Twist,” and “Facilitated Exhale.” Each represents a modified version of a traditional yoga pose that Hindu sages and their followers have sworn by for generations, but radically modified and made more accessible to autistic people. Anderson rarely teaches his classes alone. Thanks to a dedicated corps of volunteers, class attendants guide each student individually through the five-pose sequence and listen carefully and make subtle adjustments as needed.
As a trained physicist as well as a yogi, Anderson says he was naturally concerned to see his autism practice validated scientifically. While much of the current research on yoga and autism relies on small sample sizes or focuses on yoga as part of a broader intervention, Anderson and scientists at CIHM have fashioned a research design that calls for 300 research subjects, both children and adults, to be tested 20-30 at a time. The task is especially laborious because unlike many studies that rely on reporting by parents or teachers, Anderson and the Center have created a series of “biological markers” to try to quantify and measure the effects of his five-pose system on heart rate and cortisol levels—the latter a key indicator of stress and anxiety. Some preliminary initial results should be available next spring, but the full study won’t be completed and ready for publication until 2014.
“This could be a real game-changer,” he says.
Manner says she already sees a convergence between yoga autism teachers and the medical establishment in her area. She recently began partnering with a medical “think-tank” in nearby Warren—the Comprehensive Autism Medical Assessment and Treatment Center—that allows parents to take advantage of the full range of available treatments, not confining themselves to drugs and medications alone. She’s on the think-tank’s roster of “virtual experts” and is available to video-conference with ASD families during their medical appointments, offering specific yoga treatment advice, and then arranging for follow-up consultations as needed.
Manner cautions that yoga’s potential—which includes diet and nutrition and the use of medicinal herbs—doesn’t make the practice a “cure-all.” Her daughter was able to discontinue using her stomach pain and sleep medication but still needs her anti-anxiety medication—just less than she once did. Manners attributes this to the efficacy of Kerri’s yoga practice, but states that, “In no way do we recommend that anyone stop taking their meds. Hopefully, what will happen over time is that as the body comes into greater balance, the need for them will be greatly reduced.” (Any changes to medication protocol should be done under the supervision of a qualified physician.)
Skeptics in the medical establishment may question the helpfulness of yoga, but Manner states that her experience and that of other pioneering yogis already offers powerful evidence that yoga “works.” Lessie concurs. “There is no doubt in my mind that yoga can be a tool that [builds] the bridge for so many adults on the spectrum to feel more comfortable in their bodies as well as creating a social environment to bring them out of isolation,” she says. And Lessie points out that part of yoga’s effectiveness may simply have to do with providing people with ASD an opportunity to take a breath and be themselves. “Yoga can be just simple laughter or a smile,” she adds. “It’s about connecting with the self. In this sense, people on the spectrum have more to teach us than we can possibly offer them. They are the essence of yoga. To be in the moment.“
First in a series of articles on mental health.
John was fuming. He hoisted the 75-pound cement planter, then dropped it with incredible force. As he shattered the bluestone on his family's porch, he also crushed Julie Froehlich Tracy's hopes that her son's aggression would just go away with time.
John had the hallmarks of high-functioning autism as a child. He had poor motor skills, sensory issues, and unusual mannerisms. Yet he was very bright and talkative. He shared his toys with others as a child. He took good care of animals as a member of his local 4-H program.
As he hit puberty, though, he had trouble maintaining friendships. Ongoing bullying caused him to become withdrawn. Anxiety medication did not help much. Then the mood changes began.
He started violent arguments over trivial things. He lashed out often and left bruises all over his mother’s body. He was always remorseful afterwards, alarmed by his lack of self-control.
“I don’t know why I keep doing this,” he said after one violent outburst landed him in the hospital. “I have to quit doing this. I’m scared. I’m going to end up in jail.”
But what caused the volatility that sparked her once selfless child with autism to become dangerous in their home would take even longer for Tracy and her family to uncover.
John was formally diagnosed with autism in middle school. But it wasn’t until recently after years of emergency room visits, medication missteps, and police confrontations that the 20-year-old received an additional diagnosis of bipolar disorder.
“A mood disorder was developing, but we had never thought of mental illness,” Tracy said. “We just thought John’s autism was getting worse. But he was becoming psychotic.”
Looking Beyond Autism
What the Tracy family experienced on the road to diagnosis points to a growing challenge in the autism community: A number of people with autism also have some form of mental illness and the illness can go inadvertently untreated if believed to be just another characteristic of autism.
Indeed, studies within the past 15 years have shown about 70 percent of people with autism spectrum disorders may meet criteria for what are known as comorbid mental health disorders described in psychiatry’s diagnostic manual, the DSM-IV. (This percentage may change when the DSM-5 comes out in 2013.) One 2011 study from the University of Gothenburg in Sweden found about 70 percent of young adults with Asperger syndrome had experienced at least one episode of depression.
Part of the reason it is so hard to separate out mental illnesses from autism is that autism is still not fully understood and looks different in each person.
“We have so much more to learn about the parameters of autism, it’s hard to know at what point a person should receive an additional diagnosis,” said Dr. Ken Duckworth, medical director at the National Alliance on Mental Illness. “But there are people who have all of the symptoms of a mental illness in addition to the autism that warrant additional diagnoses.”
Onset of mental health disorders also often occurs at the same time young adults experience rapid developmental changes and increased social pressures, said Beth Yurman, a licensed psychologist at Spectrum Services in New York City. This can lead parents to think some of their youth’s issues are just part of growing up with autism rather than a separate challenge warranting intervention.
A student with autism may start to stick out among his middle school peers for his lack of social graces, for example, and become the brunt of bullying, Yurman said. This can start the student on a downward spiral of feeling frustrated, hopeless, overwhelmed, anxious or angry.
Bullying prompted Tracy’s son to withdraw after years of being the quirky, funny younger brother of a popular track and football athlete.
“School started to become a very significant stressor in John’s life and he became very angry and irritable,” Tracy said. “We thought it was just adolescence and that we would get through it. But we were really seeing cycles of rage in a person who was becoming severely mentally ill.”
The mood changes Tracy witnessed occurred without much warning or a clear trigger.
“It was so tricky,” she said. “Sometimes he seemed so good. Then we would be sitting at the dining room table and he would just explode.”
Abrupt changes in behavioral patterns without substantive situational changes are often red flags of mental illness, Duckworth said.
“Clinicians are reluctant to give additional diagnoses because people with autism can have some trouble regulating their moods,” he said. “But if a pattern of mood changes emerges and it is unrelated to environmental changes, such as a family move, I would wonder if there were also mental illness.” It is important to recognize that those with lower cognitive functioning are likely to exhibit ongoing problems with aggression that would not be related to bipolar disorder, Duckworth added.
“In people with and without autism, bipolar disorder also has an element of periodicity to it,” he said. “If a person is frustrated or aggressive on a regular basis, he would not fit the profile of a person with an independent bipolar diagnosis.”
The DSM-IV precludes clinicians from diagnosing some comorbid conditions in people with autism spectrum disorders. But that doesn’t mean you shouldn’t discuss these issues with a doctor if you believe they merit intervention beyond what may come with an autism diagnosis.
This is particularly important if you have a family history of mental illness. A 2008 small Japanese study found that 37.5 percent of individuals with autism and a mood disorder had a family history of mood disorders. Tracy said there is schizophrenia and bipolar disorder in her husband’s family background.
Note how these mental health issues may show up in young adults with autism:
After Tracy’s son was admitted to a city hospital’s psychiatric ward on a night he was particularly violent, he complained of seeing insects in his room.
“John said he saw ants on his toothbrush when he was at the hospital,” Tracy said. “We thought he was saying the place was unclean, but he was hallucinating and having a severe psychotic break.”
There are therapeutic approaches to addressing mental health issues in young adults with autism. The problem is these methods have little research behind them that takes an existing autism diagnosis into account. Many medications are also prescribed “off-label”—used in a manner other than what’s been approved by the Food and Drug Administration (FDA)—because of limitations in autism diagnosis and FDA approval. There is also a nagging disbelief among some members of the medical community that these challenges merit their own intervention independent of autism treatment.
“The big misconception is that symptoms of mental health disorders are just parts of a person’s autism,” Yurman said. “Some people think these issues are just a part of the disability that they cannot treat or change.”
But there are researchers and doctors who are turning their attention to how to better tease out autism symptoms from those of mental illness for treatment. In fact, psychologists Leslie Deprey and Sally Ozonoff write in "Assessment of Autism Spectrum Disorders" that "although differential diagnosis is difficult, it is essential, as treatment of the [autism] symptoms alone will usually not result in improvement in the other behavioral or emotional problems that exist. Undertreatment or partial treatment can result in significant functional impairment."
A combination of Cognitive Behavior Therapy (CBT) and medication can help many people with autism and mental health issues, Yurman said. This involves changing young adults’ patterns of behaving and thinking by making them aware of why such patterns are irrational and unproductive. Medications may alter mood and reduce impulsivity, among other functions.
But, as Tracy experienced with her son, it can take many years to uncover the appropriate treatment regimen.
John started out just taking the anxiety medication Risperdal, Tracy said. Then his doctor prescribed Abilify to address his increasing irritability. As he became increasingly aggressive, and his dangerous, destructive behavior warranted emergency room visits and stints in psychiatric wards, he received more intensive treatments. He had to go on a benzodiazepine drip at one point despite the risk of renal failure. “He had to be in four point restraints,” she said.
Even that treatment was not enough to help John, though, so his doctor suggested Electroconvulsive Therapy (ECT). ECT, which involves stimulating a brief seizure by passing mild electrical currents through the brain, has been demonstrated to be effective as treatment in severe mental illness, especially when other interventions have proven unsuccessful. However, ECT has been stigmatized by a history of abuse and the popular image of “shock therapy,” a situation some researchers feel interferes with its use with patients who might benefit. Recent research into the use of ECT with autistic patients and patients with intellectual disability points to potential efficacy in the treatment of severe conditions. As with any medical intervention, the use of ECT should be discussed thoroughly with a knowledgeable medical practitioner.
The ECT was followed with the mood stabilizer Lithium and Clozaril, which is a last-resort antipsychotic often prescribed for people with schizophrenia. ECT and the combination of drugs finally made a difference.
“The doctors were trying so hard to take care of him,” Tracy said. “They had tried everything else. The effect was almost immediate after starting the course of ECT. It was dramatic. He now has much of his gentle, kind, thoughtful personality back.”
John now lives in a residential therapeutic program and spends some weekends at home. He recently enjoyed time with his cousins at a wedding. Tracy is in the process of establishing a nonprofit program that would allow John and other young adults with autism and mental health issues in their 20s and 30s to live in a supported setting while participating in their community.
“We want to help John and others find some kind of independence,” Tracy said.
The pursuit of some form of psychiatric treatment for a young adult with autism and symptoms of mental illness is imperative, Duckworth said. Many of these mental health disorders, including bipolar disorder and schizophrenia, emerge in youths ages 18-25. Young adults with autism, therefore, may already be attending college or working in their communities when they show clear signs of additional mental illness, he said. Others may show signs when they are younger, as Tracy’s son did, but not get adequate or appropriate treatment.
Without proper treatment, mental health issues can escalate and lead to injury of the individual and others around him. Indeed a college student with autism was reportedly shot dead on recently by police officers who responded to a 9-1-1 call placed by the 20-year-old's grandmother. She reportedly told the dispatcher he was depressed and suicidal; she wanted an ambulance to take him to a hospital. But police officers with guns arrived instead.
Tracy hopes others will learn from her experience and investigate emerging mental illness early before anyone gets hurt.
“I don’t know what the future holds for John, but I am glad he is alive, I am alive, and he is becoming more stable with the right combination of medication and psychological support,” she said. “Others should not be fooled into thinking these things pass. They can get worse and worse without treatment.”
If you suspect you or a young adult you know may have a mental health disorder in addition to autism, be sure to seek the advice of more than your primary care physician. “A psychiatrist [in addition to a primary care provider] should be involved in determining treatment,” Duckworth said. “Individuals with autism, their parents, schools, and communities do not have to do it alone. You need to have a comprehensive team working together.”
Next: Mental Health Concerns in College Support Programs for Students with Autism
Sedentary lifestyles. Hours spent staring at a screen each day. Obesity and obesity-related health conditions. These are “typical” problems for most Americans these days, and individuals with developmental disabilities often suffer most of all from the nation's dwindling level of healthy physical activity. With constant decreases in programmatic and governmental funding, individuals with autism and other developmental disabilities have fewer and fewer opportunities to exert themselves and test their athletic abilities in a fun, safe, and supportive environment.
Enter Extreme Sports Camp, located in the Roaring Fork Valley of Colorado. The organization is dedicated to giving individuals on the spectrum the chance to participate in sports and experience the outdoors. In the words of Sallie Bernard, the camp's founder, “Our kids and adults [on the spectrum] are so prone to sitting indoors, in rooms, and they are missing out on something that should be a part of everyone's life: Activity Based Learning, or ABL … it's all about learning actively, as opposed to sitting at a desk.” At Extreme Sports Camp, every day is filled with indoor and outdoor activity, a dramatic contrast to “everyday” life that keeps individuals with autism and their families coming back year after year.
Bernard was motivated to begin the program because she saw a distinct lack of opportunities for her autistic son, Bill, to go to summer camp and participate in sports. Bill's neurotypical siblings loved camp, and Sallie couldn't help but desire a comparable experience for him. As she says, “I saw the value of my other kids going off to camp, and felt my son Bill should have that opportunity.” When the family relocated from New Jersey to Colorado, Bernard saw her chance. In her words, “I liked how people got outside here and prioritized outdoor sports. And so, with my son's skiing instructor, we just started to do something [with individuals on the spectrum]: a weeklong activity program, which started in 2001.” Bill is now 24, and Extreme Sports Camp has expanded beyond her initial imaginings. It incorporated as a nonprofit in 2004, and became an overnight camp for children, teens, and adults on the spectrum. (Individuals must be 8 years old or older to participate.) The program does not receive state funding; instead, students pay tuition, and money from private donors and grants helps to make programs more affordable for participants. (To enroll in a program, families can expect a base tuition cost of $1,100 for a five-day program, and $1950 for a five-day/six-night residential program. However, various scholarships and aid opportunities are available.) With each passing year, Extreme Sports Camp has expanded: more weeks, more kids, an adult program, winter ski programs. As Bernard puts it, “Every year, we keep building on that small first step.”
Summer Camps and Winter Programs
Extreme Sports Camp's first year was, indeed, very small, with four participants over the course of two weeks. Initial development was a challenge, but as word spread and interest grew, program offerings expanded proportionally. Bernard observes, “This [camp] is a work in progress. We look at sports and physical fitness from an autism perspective and actually break down sports in a way that they can be accessible to someone with autism at any level.” Essentially, Extreme Sports Camp takes the progressive thinking utilized to teach individuals with autism life skills and community-based learning and applies that approach to sports.
Bernard recalls, “When my son has been involved in sports through school programs, it was not very challenging, and it wasn't very engaging for him. It was dumbed down. I saw my son sitting on the sidelines a lot. What we do out here is figure out how analyze sports so that it can be individualized and taught to someone with autism.” Cultivating intrinsic motivation is paramount in the Extreme Sports Camp philosophy, and its staff work together to foster techniques that make their activities engaging and exciting for each participant. One of Extreme Sports Camp's goals is to set the stage for a lifelong enjoyment of sports; as Bernard says, “We really want the person to come back and do [the sporting activity] again!”
It seems that the camp has made a success of that goal, as their enrollment numbers speak for themselves. In the summer months, Extreme Sports Camp hosts nine week-long sessions, as well as a training week for staff. While each of the nine weeks has 21 slots available for individuals on the spectrum, many choose to register for multiple weeklong sessions, so although the camp has the capacity to host 189 individuals on the spectrum, the total number of individuals served is less than that each summer. The summer sleep-away camp is based at the Spring Valley Campus of Colorado Mountain College. Summer activities offered for the 2012 year include a wide variety of lake and river sports, such as wakeboarding and kayaking, as well as activities like climbing, yoga, caving, and therapeutic dance and drumming. The winter session is smaller, with six sessions, and seven participants welcomed to each session. Since the winter program is less extensive, Extreme Sports Camp also offers ski instruction and buddies to pair up and ski with participants on the spectrum throughout the winter ski season.
Challenges and Supports
As my brother Willie is a young man on the autism spectrum, Extreme Sports Camp sounds like a dream come true for families. Yet even so, I wonder: What about challenging behaviors in campers? What about how stressful it can be for individuals to try new things, live communally with strangers, and spend a week or more away from home? Is this a setup for some possibly epic meltdowns? When I voice my fears and ask Bernard my questions, she speaks in the voice of a woman who has comforted and reassured many a concerned parent. In her words, “Every participant has their own unique set of challenges. [For example], there may be someone who is very high-functioning from a cognitive perspective, but they may have emotional issues and anxiety. We try to be preemptive, scanning for signs of something that may be ‘coming up’ for a participant.” Counselors who serve as program staff are trained to watch for warning signs and monitor camp participants for conditions such as overheating, hydration, fatigue, and sensory overload. Moreover, Extreme Sports Camp seeks to offer as much support to each participant as possible. Their staffing ratio is 1:1, and individuals participate in all of their activities in teams with a supervisor present, so that 2:1 support may be available as needed. The staff is trained in each individual's Behavior Support Plan, as well as in the basics of behavioral support. In addition, staff members utilize supports such as sensory toys, social stories, calendars, and schedules to facilitate learning and minimize camper anxiety. All Extreme Sports Camp activities are located within 25 minutes of a hospital at all times, and the staff is trained in basic First Aid and CPR as well.
Given the week of training and preparation that staff members need in order to effectively support program participants, Bernard mentions securing sufficient, caring employees as an ongoing challenge. However, Extreme Sports Camp does have senior staff, all of whom have a strong experience base with autism as well as with various sporting activities involved in the camp. The camp also relies on the expertise of Diane Osaki, an Occupational Therapist and consultant who oversees areas such as staff training and programmatic safety. Furthermore, each camper is required to submit an extensive information packet, where parents or caregivers outline the individual's needs in detail. These needs might include Behavioral Support Plans, dietary needs (gluten and casein-free dietary options are always available), athletic ability, sleep patterns, and medication lists. This information, along with phone contact with parents and caregivers (which is ongoing throughout the camp session), allows staff to provide the most specialized supports possible for each camper.
The level of commitment required from the program staff is tremendous, but not without reward. Bernard says, “The feedback that we get is that it has been transformative [for staff]. It's a lot of work, and they really feel it, but … It's like childbirth; once it's over they're like, 'It was an amazing experience!'” Bernard cites examples of staff members who have participated as camp counselors and gone on to specialize in autism studies within their respective professions. As she says, “It's really neat how many people come in and say, 'Wow these kids can really do a lot of cool things.' It gives them a new perspective, and, if they are going to work with an autism population, it raises the bar in their minds as to what someone with autism can really do.”
Likewise, participating in programs such as Extreme Sports Camp allows individuals with autism themselves to get a new sense of their own capabilities. “When [an individual] is able to do a sport at whatever level, [they are] working in a zone of achievement, and ... it fosters this sense of confidence and competence,” notes Bernard. In a similar vein, being away from home overnight can promote personal growth. “The 'typical' community has known for decades that [summer camp] fosters independence and maturity,” says Bernard. “I was very surprised when my son went to camp for a week. I was crying, but he loved it; he never missed us at all! And we see that over and over. The parents can be anxious, but the kids are saying 'See ya later!'”
Bernard's words remind me of my own brother, of his intense desire for freedom. I wonder if, despite the fact that Willie loves routine, such an experience of exploration might be just what he needs. Bernard confirms: “Our kids are used to routines and patterns of behavior. When none of that is there, it can be very anxiety-provoking but also liberating. As long as you have supports in place to help [individuals] in their new setting, you can do a lot of things … that you wouldn't be able to do at home.”
Moving Forward into the Future
When asked if Extreme Sports Camp has an eye on expansion and if she considers the model replicable in other communities, Bernard replies with an enthusiastic “Yes! We're putting the foundation in place to allow that to happen.” At present, senior staff members are working to produce instructional manuals and videos, which outline all of Extreme Sports Camp's techniques, along with their approach to instruction. The materials will be utilized for staff training, but Extreme Sports Camp plans to allow other potential providers and families to access the manual as well. In addition, Extreme Sports Camp leadership is planning to host an autism sports symposium in the coming year.
Finally, perhaps Extreme Sports Camp's most exciting programmatic development of all lies in their fledgling employment skills program for adults with autism. The program is slated to begin this summer, and it will allow adults with autism to gain skills and support Extreme Sports Camp programs as well. Bernard says, “Depending on their interest and ability levels, [individuals on the spectrum] will go out with the boat team, help with climbing, plan and put on parties, work in media tech … [They'll] still have counselor or job coach working with them, but they'll be learning aspects related to the business of running a camp.” If all goes well this summer, there is potential for individuals with autism to work as employees in future sessions of Extreme Sports Camp.
It seems fitting that a program dedicated to supporting individuals with autism is opening new doors for their employment; the leadership opportunity dovetails well with the camp's mission of enhancing health and promoting personal growth of individuals on the spectrum. My brother, Willie, swims like a fish, walks faster than I do, and loves to exert himself whenever possible. I can't help but envision him at Extreme Sports Camp, showing others how to snowplow, or jumping into the lake. And for parents and caregivers across the country, such visions become reality as individuals with autism turn away from couches and computer screens and embark on Extreme Sports Camp adventures each year.
Fitness and autism are rarely paired—and the pairing becomes less frequent as people with autism grow up. There are plenty of reasons for this; perhaps one of these rings a bell:
As the parent of a teen or young adult with autism, you may wonder whether there is any point in trying to get your child involved in physical activity. After all, it’s just one more item on the list of “have-tos,” along with “develop social skills,” “figure out an appropriate, safe and comfortable housing situation,” “find a vocational path,” and “pay for it all.” And if you’re not ready to take on your child’s physical fitness as a lifelong project, why get started at all?
Why Autism and Physical Activity Should Go Together
People with autism are no different from anyone else when it comes to the relationship between exercise and well-being. The sedentary autistic child becomes a sedentary teen and adult. Without exercise, people with autism are at the same risk as everyone else for issues such as obesity, diabetes and high blood pressure (to name just a few possible outcomes). Unlike many other people, though, folks with autism may not be sedentary out of choice, but rather because they are not encouraged or supported in physical activities that might be right for them.
Besides these general reasons for physical fitness, though, there are additional reasons why people on the autism spectrum can benefit more than others from regular exercise. According to Eric Chessen, an expert in autism and fitness, one benefit relates to potential gastrointestinal issues, caused—at least in some cases—by a severely limited diet. “With GI issues, exercise has definite benefits," says Chessen. "A lot of the research on GI issues suggests that kids on the autism spectrum tend to have really poor diets. Limited variation of foods and eating a lot of processed foods can have a severe impact. If you’re eating a lot of processed foods, you’re likely to have GI issues.”
The right exercise can also improve brain function, coordination and even memory, according to Chessen. General fitness can help with some of the more common gross motor issues you may see with your child. These include difficulties with gait, difficulty with leaning forward properly, or lack of muscle tone in the trunk leading to instability.
Another important benefit can be gained from exercises that involve “crossing center line.” Just by reaching across their bodies, people with autism can exercise parts of the brain that may be weaker as a result of autism. Chessen explains: “Crossing center line means you’re using both sides of the brain—eliciting great responses in memory, motor planning and coordination. That’s an important skill to have. Rotational activities (reaching around the body) also involve doing a lot of crossing center line.”
Geraldine Dawson, Chief Science Officer at Autism Speaks, wrote a paper entitled “Sports, Exercise, and the Benefits of Physical Activity for Individuals with Autism” in which she notes that the incidence of obesity in children with ASD is higher than for neurotypical children. In addition, she points to findings that indicate that exercise provide behavioral as well as health benefits:
Research has also demonstrated that increased aerobic exercise can significantly decrease the frequency of negative, self-stimulating behaviors that are common among individuals with autism, while not decreasing other positive behaviors. … Behaviors such as body rocking, spinning, head-nodding, hand flapping, object-tapping, and light gazing, that have been shown to interfere with positive social behavior and learning, can thus be controlled by the use of exercise. Additionally, exercise can discourage aggressive and self-injurious behavior while improving attention span. … One theory behind these findings is that the highly structured routines, or repetitive behaviors involved in running or swimming, may be similar to and/or distract from those self-stimulating, repetitive behaviors associated with autism.
In the United States, many people equate fitness—particularly for kids—with participation in team sports. In fact, many children and teens participate in multiple team sports, with practices and games scheduled for most days of the week. However, there can be drawbacks to this approach to general fitness—for anyone. Many children and teens struggle with the stress and competition of team sports, and exercise often ends up focusing on only those muscle groups that are relevant to the specific sports. For people with autism, these same concerns apply. Add to that the reality that most team sports require skills that are out of reach for most people on the spectrum, and it’s easy to see why so few people with autism are involved with typical team soccer, basketball and hockey. In fact, while some kids on the spectrum are involved with special needs sports, it’s rare that they are able to transition from special programs to typical team sports programs.
All that said, however, it is nowhere near as rare to see a child, teen or adult with autism active or even fully included in typical sports which require less team engagement and more individual achievement. Some top individual sports for teens and adults on the spectrum include martial arts, swimming, hiking and bowling. While all of these sports are great for people with ASD to do on their own, they are also terrific tools for building social and team awareness if they’re pursued in the context of a team or league. They can also become activities that the whole family can enjoy together.
Fitness, however, is not about sports. It’s about exercising and strengthening the entire body, building not only specific skills but also cardiovascular endurance, muscle strength, and flexibility. No one sport, no matter how intensive, can provide a complete fitness program—unless it’s combined with cross training.
Fitness in the Ideal World
In the best of all possible worlds, everyone—autistic or not—would have a regularly scheduled fitness program incorporating every muscle group and including activities related to strength training and flexibility. While most of us don’t live in an ideal universe, it may be possible to create such an program for high schoolers through physical education classes. Some high schools offer a true physical education curriculum, and/or an adapted PE program, which actually teaches kids how to exercise, how to measure gains, and how to get and stay fit.
It’s also possible, of course, to set up one’s own physical fitness program—and Eric Chessen has a wide range of activities that he recommends if you choose that course. His recommendations start with low-cost, high impact equipment such as medicine balls, jumping ropes, hurdles and cones. Exercise should be fun for everyone involved, so an elaborate set-up that costs money and looks like a medieval torture chamber is not only unnecessary—it may even be counter-productive!
Fitness in the Real World
In the best of worlds, your child with autism can’t wait to get physically active, there’s a great program locally, or you yourself have nothing but time and energy to create and run a fitness program at home (or to establish an exercise program at your child’s place of residence). But what if your teen or adult is a dedicated couch potato, you’re at work nine to five, and the high school or program where your child is spending his days has very little interest in physical activity?
The bottom line is, something is better than nothing—and something that’s fun is almost always better than something that feels like work. It’s also important to think about the purpose of the activity, so that it’s not simply movement, but movement with intent. To get started, then, here are a few possible directions:
Assessing and Choosing a Fitness Program, Coach or Instructor for Your Autistic Teen or Adult
Instructors and coaches with “special” credential and “special” facilities are great, but often they’re very expensive. And the fact that they’re labeled “special” may or may not mean they’re better for your child than another option. Far more important than the specialness of their programming are two key factors: (1) is your child interested in the program offered, and (2) is it the right match for your child? In fact, if there is a typical sports, activity or fitness program available that works for your child, it’s probably a better choice in the long run; an inclusive experience means that your child is building not only physical skills and fitness but also building social skills and connections that will serve him well in the wider world.
Of course, teens and adults with autism are not “kids with autism,” and so some of the usual programs may be tougher to access, though some do serve young adults up to age 30. But there are still plenty of options—and the options you choose now will be available to your child for many years to come. A few possibilities to consider as you look around the community:
Before getting started with any activity, you’ll want to be sure that the instructor and program is right for your child. Of course you’ll go and watch the program in action, and you’ll ask for an opportunity to try out the activity a few times to see if it’s a match. In addition, you’ll want to ask the following questions:
Questions to Ask a Coach
The Bottom Line
Exercise and fitness are not “extras” for an adult with autism. They are critical. While it’s possible to set up your own fitness or exercise program, and it can be fun and rewarding, it isn’t always feasible. When doing your own thing doesn’t work out, it may make sense to tap into professional or community programs for your teen or adult on the spectrum. By avoiding “team sports” and seeking out activities your child (and you) can truly enjoy, you can develop an exercise program that suits your family’s needs. What’s more you can do it all without breaking the bank. To get started on fitness and fun for your teen or young adult with autism:
Being a self-advocate in the autism community for the past several years has definitely had a few perks here and there.
Last night I had a dream that found me raging through my childhood home. For some reason, I was very angry with my family.
Every day I live with and struggle to compensate for my autism.
“I don’t think it’s safe to go,” I texted my sitter. “Let me call the office.”
I attended a focus group this week. A new venture is being developed with the intent of providing a unique six to nine-month internship experience for young adults with disabilities.
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