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.

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:

READ

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 goodinterviewing 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:

Autism Research Institute for a list of Defeat Autism Now! (DAN!) Doctors

Thoughtful House

ICDRC

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.

The Art of Managing Professional & Appointments

Why Are DAN Doctors So Expensive?

Frequently I am asked: Why are DAN! (Defeat Autism Now!) and other autism treating physicians SO EXPENSIVE?

This is a frustrating situation. First it is important to understand why this process is expensive for families. There are some reasons that define the pricing differences. Here are a few:

1. A well baby check up takes a doctor about 5 minutes. Seeing sick typical kids takes about the same time. A Physicians office will bill the insurance company, apply a co-pay (if needed) and is done and onto the next patient. This process happens thousands of items a month in many doctors offices and is a procedure they are familiar with in practicing medicine. Pediatricians can bill and see anywhere from 30-60 patients in a single day. These visits are not a huge reimbursement amount. It can be vary from $20-$40 or more depending on the visit and specialization.
   
2. Seeing a child affected with autism for a DAN or other treating physician is more complex and takes a significant amount of time. My appointments with my son’s doctor are anywhere from 1-2 hours. That takes the doctors # patients being seen in one day down to 3-4 vs. 30-60. Hence their large hourly rate and many do not take insurance.
   
3. There are a lot of parents looking for answers for their child affected by autism where medical testing and treatment is concerned. I also feel these areas are driving pricing up because of the high demand. Because of this high demand, many good doctors have long wait lists because each patient takes a considerable amount of time to see, take a patient history, perform medical testing, research, and provide a treatment path unique to that child.

Now we have identified the problem and addressed why doctors treating autism are more expensive WHAT DO PARENTS DO TO HELP CONTROL THE COSTS?!

Here are some suggestions for you to consider:

a) Make sure your office visit is properly coded for all the items discussed and treated with your child. For example: if the visit cover 4-6 areas of medical concern these need to be coded so the highest possible reimbursement from your health insurance company can be provided. It is important to read this link.

b) Getting a proper referral from a doctor in your network to a specialist outside your network will increase your odds for reimbursement.

c) Often parents are told “we don’t cover that for Autism.” It is also important to read this important California law about “equal parity for insurance coverages”.

d) What does the American Academy Pediatrics Standards of Care cover for autism? Unfortunately today – very little. Read about what they cover by clicking here. (Notice it has not changed in over five years. In addition that is why it is important to call and treat the medical symptoms by their name such as “chronic constipation” versus autism”)

e) Not all resources are perfect in their bed side manner, treatment protocol and experience. That is why it is sincerely recommended you read this article about managing professionals and the parent bill of rights.

f) Be PREPARED. Go to your doctors appointment or follow up conference call with an agenda and stick to it! Often parents will wander off topic and take more time that will cost more than planned. If you create an agenda and stay on task you can accomplish more in less time.

This area requires an important note that if you a married or divorced couple is on the phone consult or at the appointment to meet AHEAD OF TIME to prepare and AGREE to an agenda. It is important both parents remain as team mates for the treatment process and their child.

g) READ about treatments, lab tests, and information you wish to discuss prior your doctors appointments or follow up conference calls. Use the appointment time to discuss the treatments and review what you know. Try not to use this time to educate your self from the beginning of a treatment concept.

Once you have prepared and have that upcoming appointment, the question that usually follows “why are they so expensive” is “How can I pay for all of this and get the medical treatment my child needs??”

If you cannot afford a DAN doctor / autism medical specialist due to co-pays or “no-pays” due to health insurance coverages there are some suggested ways to paying for these important services and treatments. There are several ways folks are getting funding for these services.

Here is my list:

1) Foundations: Some foundations have grants just for funding medical care. These are not easily tracked and change as the foundation funding changes or applications received. In addition, this process requires a lot of research and paperwork to receive the yes or no answer. Please note TACA does not have a listing of these grants as the process is too complex and unique to each family to collect.

You have to do the research on your own. Type in FOUNDATIONS at Yahoo.com or Google.com. It is some work to find them, but several families in TACA have done this successfully.

2) Loan: Get a loan from your bank. Some banks offer low interest loans for medical care. This varies by bank and requires some research on your behalf. Read Who Pays for What?

3) Pro-bono work: MANY special doctors offer pro-bono services or have labs or suppliers they collaborate with in helping families in need - meaning free services and product for families in need. Some doctors dedicate a percentage of overall services to providing needed services to low income families. YOU DON’T KNOW UNTIL YOU ASK IS THEY PROVIDE THIS! Each office may have different levels for qualifying for assistance. Please remember not all doctors can offer this service to the community. You can find a list of doctors in our Resources section.

4) Payment terms: Many doctors will allow you to pay monthly a set fee that meets every budget. Organize this arrangement PRIOR to services commencement and in writing with their office.

5) Family: It is time to ask family for help. Instead of birthday and holiday gifts, the best gift is cash to help you with your child's needs. Better yet, ask for a loan for medical care fees.

These are some suggestions in helping you understand why the fees are so high and some suggestions on getting the help your child needs. This is not medical advice.

Important notes from the editor:

1. Autism is biomedical in nature and each child deserves proper medical care to their address their unique needs. This entire situation of health insurance coverages and medical costs is very frustrating process but well worth the effort. In addition, that is why it is I recommended you read and support the Autism Treatment Network – another not for profit organization trying to help this process.
   They are doing some important work that could change the future for this important problem affecting many families. You can read more about this at www.autismtreatmentnetwork.org or hear a radio show I did back in January 2005 on this topic on Autism One Radio. It is free – here is the link Autism Treatment Network ( from a 01/28/2005 radio presentation) www.autismone.org/radio/default.cfm?archive=26
   
2. There are no guarantees on health insurance reimbursement but if you get educated on the process of reimbursements, proper insurance billing coding, good documentation, and frequent calls to your provider you will be more successful in the process.

What Is It? When Something Is Going On
Strange Behaviors, A Plateau, An Old Self Stims

This is a tricky process: supplements, dietary interventions, food allergies, additives, sleep issues, medical intervention, daily behavioral therapy, and other therapies – it is a lot to worry about! Parents with doctors assistance are always seem to be checking, changing, deleting, adding ideas to your child’s daily intake, interventions and program. Never a dull moment!

Occasionally, with progress and success – set backs can happen. Set backs come in several shapes and sizes. Here is the checklist I use when something does not seem quite right:

1) Too much sugar / yeast issues

CONSIDER THIS SUGGESTION: Eliminate sugar or go low sugar, NO yeast diet and add probiotics . Replace refined sugar with maple syrup or honey. MANY children work with dietary interventions and add a yeast inhibitor. These are typically prescribed by a physician with drugs such as; Nystatin , Diflucan , Ketakonozole and others. There are natural yeast inhibitors such as Lauricidin , Grapefruit seed extract, and Olive Leaf Extract.

What does high sugar intake look like? Symptoms can include increased hyperactivity, trouble falling asleep, listening to directions and keeping attention. (Yes, some of these symptoms can be autism – but many times these symptoms and others can be another underlying issue.)

What does “yeast” issues look like? Yeast issues typically include the “high sugar intake” issues above and also could include: rashes (especially around the anus), toe walking, extra self stimulatory behaviors (stims) that went away and have come back, seeking deep pressure (propreceptive input) and other related issues.

2) Gluten/casein OR FORBIDDEN FOOD Infraction

CONSIDER THIS SUGGESTION: it is an infraction and check for everything your child ate. OR in the case if you have not done the diet, you need to do the diet. If you suspect an infraction, please go to GFCFDIET and DIET INFRACTION section for information on how to get through this as smoothly as possible. Re-trace your child’s steps, ask therapist and teachers if possible the child accidentally got a forbidden food. Tell them not to be afraid to tell you and it is better to know so you can respond accordingly.

3) Phenol overload

CONSIDER THIS SUGGESTION: Remove phenols - GF CF Diet, Phenols for info - AND give Epsom salt baths nightly to combat these. It could be a sulphanation issue.

What does “Phenol overload” look like? Phenol over load could include these symptoms; dark circles under the eyes, laughing at inappropriate times – especially at night, extra self stimulatory behaviors, and other issues.

4) Allergy/intolerance to a food or foods

CONSIDER THIS SUGGESTION: Do a complete allergy panel from ImmunoLabs , Sage Labs, or rotation diet to find and eliminate the offending foods! Or consider a rotation diet to find the offending foods. (Your doctor would prescribe these tests and review the results with you.)

What does an allergy or intolerance to a food look like? It could be a change in one or more of the following issues: changes in behavior, sleep, new rashes, changes in stools, new stims or other issues.

5) Dyes / natural flavors (this was a big hint that Jeff got his hands on the wrong foods - he would start toe walking again.)

CONSIDER THIS SUGGESTION: Avoid these at all costs! They have no nutritional benefit and seem to be harmful to autistic kids! Go natural, organic foods with no additives! These additives can really reek havoc on a child with a sensitive gut or bowel movement issues. It is truly best to keep the foods simple and avoid all unnatural ingredients all together!

6) Or the supplements don't work for your child's chemistry!!

CONSIDER THIS SUGGESTION: SEE NOTES BELOW! Also watch for your child’s intake amount! Sometimes the bottles give adult size doses! Please check with your doctor on proper dosing for your child’s age, weight, and supplement objectives. Some ideas to consider: Back off the dose to start! Give 1/4 of the dose to see if it works for your child!! Please be sure to document daily intake so identifying new, offending foods, supplements or other items can be easily (or easier to) identified.

7) Dark Circle / Bruises Sleeping issues:

CONSIDER THIS SUGGESTION: Most of these issues can be resolved going thru items 1-6 – allergy testing, phenols & dye removal, etc. But if you see bruising, try essential fatty acids (like Cod Liver Oil, Evening Primrose oil, Flaxseed oil.) When a child has sleep issues, there may be issues w/ impacted stools causing “night wakenings ” and “night terrors”. Consider an extra of the lower abdomen or stool study to get to the bottom of the issue! When child sleeps this = one big happy family!! I don’t know about you but I am capable of a lot more productivity with at minimum 7 contiguous hours of sleep – just think about how our kids feel? They need sleep too!

8) Almost always - IT IS IN THE POOP!! ISSUES WITH CONSTIPATION OR DIARHEA OR STOOLING FREQUENCY

CONSIDER THIS SUGGESTION – for many autistics the bottom line, it always is about bowel movements ! The consistency, the frequency, proper digestion, absorption, and many other issues! Here are some ideas to consider for constipation or diarrhea. We have an entire web site page dedicated to POOPS! Please check out POOPS for details on treating poop related issues.

9) Is the side effect of a new treatment a NEGATIVE RESPONSE to treatment or a common side effect?

Almost all treatment recommendations by doctors have a side affect. It is important to not that these side effects can be good or bad medically speaking. Parents are recommended to read up on medications & treatments besides what the doctor says in an appointment. It is important to know what is a “liveable” side affect vs. a negative side affect to stop a treatment. Parents should establish clear evaluation guidelines with the doctor for each medical treatment before trying something new. The guidelines include: common side effects (what they are, how long they last) and negative side effects (i.e. when to stop the treatment.)

For example: chelation and yeast treatments can bring out negative behaviors that were gone for a good period of time. Sometimes these behaviors are a “common side effect” to a treatment. The doctor should indicate how long they are expected to last. Often these set backs of negative behaviors can be followed by a period of wonderful growth. These side effects should be clearly explained and expectations set prior to commencement of a new treatment.

In addition – a good question to ask: is there any way to mitigate the side effects? Or plan possible new treatments around holidays (or not!) and or school breaks and weekends.

NOTE: IF A SYMPTOM CARRIES A FEVER, LONG PERIODS OF IRREGULAR BOWEL MOVEMENTS WHICH CAN LEAD TO DEHYDRATION OR OTHER ISSUES, EXTREME CHANGE IN BEHAVIOR, LOSS OF SLEEP OR APPETITE FOR AN EXTENDED PERIOD OF TIME, PLEASE CONTACT YOUR DOCTOR IMMEDIATELY.

Some closing notes on SUPPLEMENTS :

1) Supplement vacations: When you have the diet, allergy, intolerance issues down and your child takes a step back, take them off all supplements for a "supplement vacation". For about 1-2 weeks no supplements. Then you add them back in 1 at a time, 3 days apart. You can easily see if one supplement is bothering your child. In addition, you sometimes need a break from all of them.

2) At a DAN! conference in San Diego a parent asked a question of Dr Jeff Bradstreet; "My son used to take all his supplements just fine. In fact, he has been fine with the supplements for the last year. Now whenever I give him his supplements he immediately throws up." The answer: STOP GIVING HIM SUPPLEMENTS! What you supplemented with last year, may not be what the body needs THIS year. The whole idea of giving supplements is replacing the body of what it needs or is not absorbing from the food. This is unique to the child and changes as the child’s issues changes.

3) What ONE child receives in supplements is not what ALL children should receive. Supplement what your child needs with a doctors support and tests.

Disclaimer: Cayman Islands Autistic Spectrum Disorder Foundation (CIASDF) provides general information of interest to the autism community. The information comes from a variety of sources, and CIASDF does not independently verify any of it. The views expressed herein are not necessarily CIASDF'S. Nothing in this document should be construed as medical advice. Always consult your child's doctor regarding his or her individual needs.