The Parent’s Role in Biomedical Treatment for Autism Spectrum Disorders
By Lisa Ackerman - December 2006
Nothing is more heartbreaking for parents than receiving the label of “autism” for their beloved child. Hopes and dreams for a child never include this devastating diagnosis. As follow-up appointments come and go, many families, including mine, have heard this statement from professionals: “There is nothing you can do.”
Parents of newly diagnosed children are bewildered because many children on the spectrum have medical symptoms that are not explained by an autism diagnosis. These symptoms—gut problems, allergies, rashes, and others—are rarely addressed by the children’s doctors, who typically do not look beyond the autism label.
In the new millennium, in which doctors are capable of saving thousands of lives using state-of-the-art treatments, the evaluation and treatment of autism appears to be trapped in the Dark Ages. While much progress has been made in the past 20 years through the use of traditional therapies including Applied Behavioral Analysis (ABA), speech therapy, occupational therapy, and other key therapies, little has been offered in the way of biomedical intervention and treatments for children on the autism spectrum. This is even more frustrating now that we are in the midst of an epidemic affecting 1 in 150 children (Editor's note: This was revised to 1 in 91 in 2009, then 1:68 in 2014).
There is good news, however. What I can share with parents of newly diagnosed children, and with families who have been in their autism journey for awhile, is the knowledge that there are effective treatments—and there is hope.
Our parent organization, Talk About Curing Autism (TACA), includes more than 2,100 families. Many of these families are exploring biomedical and alternative treatments. More than 40 TACA families have recovered children (meaning the children have lost their diagnosis and are indistinguishable from their peers), and more children are well on their way to recovery. These successes are due to a combination of biomedical interventions and traditional therapies.
In many cases, families are looking to treat the medical issues that their children have. These issues can include lack of sleep or severe sleep disturbances; extreme gut disorders (often including alternating diarrhea and constipation); rare parasites, viruses, yeast overgrowth or bacteria; extreme allergies to foods or substances in the environment; unexplained rashes; sallow complexions; dark eye circles; and behaviors that ebb and flow in patterns that may coincide with physical symptoms.
Most parents partner with knowledgeable and open-minded physicians to explore treatments that will address both the behavioral problems and the physical symptoms of their children. As key members of the treatment team, these parents play a very important role in working with a variety of medical professionals.
The first and most crucial role parents have is selecting the medical team that will guide their child’s treatment plan. In making this decision, it is important to understand that many doctors follow the guidelines of the American Academy of Pediatrics (download PDF) These guidelines, which have not been updated since May 2001 discourage physicians from recommending the cutting-edge treatments that help many children with autism spectrum disorders because these approaches are considered “alternative.”
This is extremely important because if a test or treatment is not recommended in the standards of care, the costs for testing and treating may be left up to the families. In addition, the professionals who work with our special children need to think “outside the box” in order to address children’s biomedical symptoms and issues.
Selecting the right physician is just the first step that parents need to take in the journey toward a better life or even a full recovery for their children. The insight of parents is crucial in providing valuable clues regarding treatment priority, and providing this insight in a knowledgeable and organized manner can optimize treatment for the child with autism and save money, time and effort for families.
Here are the key steps that parents can follow as they participate in this medical treatment process:
Parents need to read both books and information on Internet sites in preparation for their role in the treatment process. Our organization, TACA, offers the following helpful online articles:
- The Art of Managing Professionals & Parent’s Bill of Rights – which includes good interviewing questions and ways to plan for appointments
- Why are Defeat Autism Now!(DAN!) Doctors so expensive? Includes beginning tips and tricks for preparing for medical appointments and testing
- How to start biomedical intervention for Autism Spectrum disorders – a presentation.
- What is it? Troubleshooting check list for families in the biomedical process
Among the books that parents find the most helpful when beginning the treatment journey are:
- Unraveling The Mystery of Autism, by Karyn Seroussi
- Evidence of Harm, by David Kirby
- Is This Your Child?: Discovering and Treating Unrecognized Allergies in Children and Adults, by Dr. Doris J. Rapp
- Children with Starving Brains: A Medical Treatment Guide for Autism Spectrum Disorders, 2007 Edition, by Dr. Jacquelyn McCandless
- Autism: Have We Done Everything We Can for this Child? Effective Biomedical Treatments, by Dr. Sidney Baker and Dr. Jon Pangborn
- What Your Doctor May Not Tell You About Children’s Vaccinations, by Dr. Stephanie Cave
Additional Web resources pertaining to biomedical treatments include the following:
GET EDUCATED Attend a Defeat Autism Now!(DAN!) conference for the latest in medical research and information. See listing of DAN! upcoming events.
NETWORK Talk to multiple families about the most recommended resources. Even though children with autism spectrum disorders have different needs and require individualized treatment protocols, input from other parents can be invaluable in providing reviews of resources, stories about successes or failures, and tips and tricks that could save your family time and money.
SELECT A PARTNER YOU LIKE FOR THE LONG HAUL It is important to interview several doctors before you choose one as your treatment partner. Since you will be working with this professional on a regular basis, it is good to pick someone you like and can communicate with effectively.
DOCUMENT It is important to document your child’s history carefully. Parents need to provide their child’s doctor with a complete record. It is also helpful to write a one- to two-page summary—a “Cliff's Notes” version of your child’s file—hitting the high points such as: regression information, current medical therapies and traditional therapies provided and key issues that need to be addressed. Copies of recent behavioral or psychological assessments and the I.E.P. (Individualized Education Plan) from your school district will also yield important clues for the treating professional.
PRIORITIES Prioritize your child’s issues when you address them with the physician. If your family is getting little sleep or your child has gut issues, these are often good places to start the process of building a foundation of overall health. Then identify other issues that need attention. Your input is important in setting priorities so the doctor knows what the focus should be.
HOW MUCH IS IT? Take the guesswork out of this important question and ask. While costs may vary according to each child’s unique medical issues, it is important to outline fees for office visits (typically one to three per year), emergency/after-hours calls, phone consults, treatment protocols, lab fees, and other items prior to commencement. Obtaining insurance pre-approvals for treatments can also be a lifesaver for the family wallet.
EMERGENCIES Parents should obtain clear guidelines so they will know whether or not to call the doctor or emergency facilities if a treatment causes side effects. A description of non-serious side effects (continue the treatment) versus serious side effects (stop the treatment and/or call the doctor’s office) should be clearly provided at the end of each appointment when starting a new treatment protocol.
READ (PART II) The education process will continue after your first year. It is especially important to read about each suggested treatment after a doctor recommends it and before you try it on your child. Research and information are rapidly changing in the medical treatment field and continuing your education is a necessity.
EVALUATING TREATMENTS The treating professional should outline the positive or negative results a treatment could yield. Creating an easy-to-use “check-off” document outlining each day’s treatment is extremely important in this process. This should include the following data: meals, bowel movements, liquids, medication, sleep patterns, and behavior changes. Keep your daily journal in an easy-to-find place in your kitchen where you will see it and can easily jot down notes. Bring the journal on follow-up doctor appointments or have it handy during phone consults so important information can be provided.
A FEW WARNINGS
In the biomedical journey a few words of caution are warranted:
A) NOT THESE WORDS! Don’t let the diagnosis of AUTISM be an excuse for failing to treat issues that are medically necessary to treat. If a doctor says that a medical issue is “just part of the syndrome,” it may be time to find a new resource.
B) HOW LONG? Don’t give up if you try only one or two treatments and they do not help your child. It’s heartbreaking when I hear parents describe how the failure of a treatment led them to stop biomedical intervention altogether. Children on the autism spectrum are unique. The solutions to their medical problems are unique as well, and answers are still emerging. It is important to remember that the biomedical intervention process can take a long time to yield results, but that these results can be amazing if you use patience, a good doctor, and medical test results to help design a treatment plan unique to your child’s needs.
C) CHARLATANS: As in any growth industry there are sales people ready to sell you products including medical treatments for your child. Work with your doctor and parent community on identifying treatments for your child and verifying good resources to use.
D) TRUST YOUR INSTINCTS: If something about a situation or office or medical professional does not feel right, it may not be! Do more research on the provider and ask other parents for feedback. It is important that parents never lose faith in their instincts in this process.
Some Final Words: How are Treatments Selected?
Medical treatments for children on the spectrum should be selected based on family history and patient intake (symptoms and history). Medical test results (current and past) also provide important markers.
Doctors should also look at what the child has responded to, both positively and negatively. This information will yield important clues when it comes to selecting protocols unique to the child’s needs.
Finally, based on the parent/child issues, doctors should:
- Be able to set treatment priorities.
- Allow the parents to prioritize these treatments as a team.
Parents who are in chat rooms on the Internet and readers of books on biomedical treatments will want to start with the “latest and greatest” treatments available. However, the child’s doctor may recommend dealing with the most pressing issues first to set a foundation before pursuing other treatments.
Biomedical treatment should be a key part of your intervention plan for a child with autism. In addition to biomedical intervention, consider one-on-one behavioral intervention including but not limited to Applied Behavioral Analysis, Verbal Behavioral Analysis, speech therapy, occupational therapy, and therapies to address play skills and social skills. Combining biomedical intervention and intensive one-on-one therapies can offer a comprehensive treatment approach for a child affected by autism.
Lisa Ackerman is a parent whose experience includes one child: her son, Jeff. She has quit her job in management to work full-time with her son and other families through a group she founded, Talk About Curing Autism (TACA). TACA started with 10 families in November 2000, and by August 2006 had more than 2100 families and seven meeting locations in California. Read more information about TACA. Lisa also does a bi-monthly free online radio show at Autism One.
This article appeared in the 4th Quarter 2006 ASA Autism Advocate.