by Leslie Phillips
One of the most challenging aspects of being a caregiver of a person with autism is finding proper medical care. Some people with autism are nonverbal and unable to communicate pain or discomfort in traditional ways. Others may have strong verbal skills but still are not reliable reporters of health issues.
This problem is greatly compounded by physicians who, too hastily, attribute changes in behavior or bowel habits, staring spells and any number of symptoms to “it’s just the autism.” In fact, there is overwhelming evidence that certain medical conditions occur at a very high rate in autism. Often these conditions are treatable, and, when properly addressed, can improve core symptoms of autism, as well as immediate health concerns (such as pain) and long-term health outcomes. Parents and caregivers must be astute detectives to determine whether undiagnosed medical conditions exist or should be ruled out based on high prevalence in this vulnerable population.
Treating Autism, an organization dedicated to better understanding of the underpinning medical issues, has created an important document, Medical Comorbidities in Autism Spectrum Disorders, to guide caregivers and health care providers. The organization cites “…Widespread reports of severe medical conditions being attributed, without investigation and sometimes without physical examination, to ‘autism behaviours’…”. This holds true across age groups, and can result in serious long term health consequences, including mortality rates three to ten times higher than the general population.
If this heavily referenced document doesn’t convince you, a comprehensive literature search of studies from 1971 to 2010 provides compelling evidence to support associations between autism and many debilitating medical conditions. The paper, published in the journal Molecular Psychiatry in 2012, shows roughly 90-95 percent of published literature on identified topics supports associations between autism and serious medical conditions. In other words — and this is critical to understand — there is something about the biology of individuals with autism that puts them at greater risk for many serious medical problems.
So, what’s a parent (or caregiver) to do? The answer is complex, but here are six steps you can take to ensure your loved one with autism gets the best possible medical care.
1) Read the two documents listed above to understand which conditions are most closely associated with autism, and then share these documents with your child’s healthcare provider. Pay attention to the quantity and quality of references that support these links. You will need a suit of armor to proceed and knowledge is your armor! Don’t be too overwhelmed, though, because it’s not necessary for you to obtain a medical or doctorate degree to advocate for your loved one. You will have help!
2) Connect with support groups — in person if possible. Talk About Curing Autism (TACA) and NAA have many chapters nationwide and can provide invaluable information and support. Join online support groups that seem to be best aligned with your philosophy. Some groups are specific to certain diagnoses or treatments, others are broader in scope. Ask questions, but be a critical consumer of the responses. Groups (or health care providers) that promise “cure” or “quick fixes” should be avoided. Focus should be on treatment, guided by testing, toward the goal of symptom improvement and possible progression to recovery. Bear in mind the complexity of individualized medicine and steer clear of anyone who greatly oversimplifies an approach. You’ve heard it before — this is a marathon, not a sprint — so be methodical and discriminatory in your approach.
3) Find a health care provider who understands how to treat autism medically. This is probably the hardest part, since very few have studied comorbid medical problems in ASD. Fortunately, there is a pediatric CME program to train professionals on diagnosis and treatment of the complex — often chronic — medical conditions in autism. It’s called MAPS, which stands for Medical Academy of Pediatric Special Needs, and more and more physicians and providers are undergoing this training. Your support groups can help you identify providers that meet your needs. You might want to see a doctor nearby, or opt to travel to someone with greater experience in the areas you feel need addressed. For some important tips, see TACA’s Parents Bill of Rights and Parent Responsibilities.
One tough issue is some of these practitioners do not participate in insurance programs. Bear in mind the healthcare debate in our country has not really been about health — it’s been about who pays, and who has access. Meanwhile, Americans are less healthy than any time in history, so it’s up to each family to decide what they can commit to testing and treatment. Most mainstream physicians who take insurance are only going to prescribe psychotropic medications or off-label prescriptions that seek to mask, and DO NOT TREAT, the underlying medical issue. If your only option is to see a health care provider that is not MAPS-certified, try to find someone who is progressive and open-minded. Take your research and a list of your loved one’s symptoms to the first appointment. Many caregivers say that by listening and not being overbearing, they develop a better relationship and are able to get further with a provider. If the provider rolls their eyes and says “It’s just the autism. Take them home and love them,” find another provider. None of us needs to be told to love our children or grandchildren. We find an overwhelming majority of caregivers do an exceptional job of this.
4) Get organized. Many caregivers have created systems to keep track of testing, medical bills, insurance claims and appeals. Obtain copies of all medical test results and, if you don’t understand the findings, do more research. Document in writing any verbal conversations you have with insurance companies, keeping track of names of individuals you speak to, noting dates and times. Remember, sometimes it takes one, two or even three appeals before insurance will pay. In this instance, persistence literally pays much of the time. CPT and diagnostic codes should reflect the specific symptoms and suspected problem. Using the “autism” code (299.0) does not accurately describe the reason for testing and can often cause a claim to be dismissed out of hand. An exception might be to obtain Applied Behavior Analysis (ABA) treatment in a state where coverage is mandated for autism.
5) Get the family on board. You will likely need your spouse, siblings or others in the household to cooperate with treatments. It’s important they understand how critical it is to maintain adherence to diets, supplements and other protocols to remain consistent and give treatment options a chance to work. View every effort as an opportunity to improve the health of your loved on instead of focusing on sacrifice. While there are many difficulties, it is possible for family members to grow in compassion and become stronger individuals in the process.
6) Keep your eye on the prize. It can be overwhelming to address all the medical, educational and emotional needs of your loved one, not to mention the rest of your family. Improvement or recovery is rarely linear — it often looks more like a roller coaster. Use your trusted provider and your own instincts to determine whether you’ve given a treatment a fair trial. As much as possible, take care of yourself and other family members. Good communication with those in your household can go a long way to preserving the loving relationships that can be stressed when there is autism in the house.
Just like your own health and that of every family member, you should view diets, supplement schedules and other treatments as a way of life. Some treatments are short term, but many are carried out over months or years to maintain optimum health. It might take a change in paradigm, but it’s important to view autism treatment as a necessary, positive and healthy lifestyle that can reap countless rewards.
Please note: the article above is for information purposes only and does not constitute medical advice or an endorsement of any clinical or therapeutic method, treatment, service, safety device, safety product, organization or vendor. Before initiating any treatment or therapy, please talk with your child’s primary healthcare provider.