Biomed: A Novel Concept. Or is it?
To begin with, recovery isn’t about pulling out the prescription pad. While medication can be used as an intermediate step, the biomedical approach is about getting at the root of the problems and healing the whole body. After his son had been diagnosed with autism and watching his wife care diligently for their son, Dr. Bernard Rimland, a Psychologist, debunked the myth of the “refrigerator mother” as a cause of autism in his book “Infantile Autism” (1964) and based on his research, concluded that autism was a biological disorder which if not cured, could at least be ameliorated by biomedical and behavioral therapies [1].
This research included the most current scientific data available on improving the methods of diagnosing, treating, and preventing autism. He founded the Autism Society of America in 1965 and established ARI (Autism Research Institute) in 1967. In 1995, after 30 years of research and data collection, the DAN! Protocol was formally established; carefully selected physicians, researchers and scientists update it annually. Peer-reviewed scientific studies form the backbone of this treatment [2]. ARI/Defeat Autism Now! is dedicated to educating parents and clinicians regarding research, appropriate testing, and safe and effective interventions for autism [3].
For many ASD children, there are multiple body systems and cycles that are either not working at all or working inefficiently; many carry a detrimental bacterial load because of poor diets, illness, poor immune systems, inheritance, antibacterial use and other reasons; and many carry viruses which run at a sub-clinical level meaning the body’s defense systems aren’t strong enough to get rid of them, but the viruses aren’t strong enough to manifest themselves in traditional ways. All of these problems can be complicated by various genetic mutations, and for some children, adverse environmental conditions. To help determine where each child may stand in relation to all of these issues, a series of traditional and “non-traditional” tests are run in the beginning in order to get a baseline. I say “non-traditional” because traditional medicine either does not run most of these tests or their testing methods are not sensitive enough for our children’s particular problems. Our children and their issues tend to fall outside the Mainstream Medicine Box which means their testing and recovery methods are also outside the box – at least for now. But, don’t get me wrong, here. This is not some magic or quack science. The biomedical approach is not “alternative “ medicine; it’s a science-based, molecular-biological approach [4] to healing our children. This is a safe and effective approach and there are many research studies that are consistent with, and/or support, the efficacy of the Defeat Autism Now! (DAN!) concept [5].
The doctors that implement this approach come from varied medical backgrounds and experience. They go through a training program as outlined by ARI (Autism Research Institute), developers of the Defeat Autism Now! autism recovery protocol. They are required to sign a philosophy statement, pay an annual fee and attend at least one seminar every two years. As with any doctor, you should look for a DAN! Doctor that you like and with whom you can work. Ideally, while all doctors are different, parents are integral partners in the recovery of their children. Again, a good working relationship is key. For many people, this means you have to travel to your doctor. Since the appointments are spread out and communication should be available between appointments, this actually works to most people’s advantage.
So how is the DAN! experience different than most medical experiences you’ve probably encountered so far? You are a partner. Most good DANs listen, ask for - and want - your input, and they work with you. Pretty remarkable concept, no? It is through your observations and feedback that the doctor can help guide and adjust your child’s path of recovery. The more you learn about the process and the various steps involved, the better you can problem-solve between appointments, the better prepared you can be when you go to follow up visits and be able to have more meaningful discussions. Keep in mind when trying to find a DAN! Doctor, that just like our own physicians, not all DAN!’s are the same and just like when we try to find a Dr. for ourselves, you need to screen your DAN!. ARI has published a list of questions you can ask your potential doctor to help determine if this is the right person for you and your child: http://autism.com/dan/ques2ask.htm
What to expect on that first visit.
Typically, there is an initial intake, which should take a minimum of an hour (in my opinion). Here, the doctor will ask a comprehensive set of questions and observe your child and maybe do a minor checkup. Based on the Dr’s observations, the papers you submit and your responses, he/she will chart a path of recovery, order tests and set a follow-up visit 2-3 months away.
Though it seems like a long time, during this time you'll have the tests done and implement whatever has been recommended. At the follow up appointment, you'll review test results, report how things are going at home with the changes, and from there the doctor will tweak the path. The next appointment date will vary but can be months away. The exact visitation schedule will vary according to the Doctor’s treatment methods.
Your DAN! should be willing to communicate via e-mail or phone. Some DANs charge for this, some don't. Find out the best way to communicate with your DAN! in-between appointments. Also, keep in mind that your DAN! is NOT your child's pediatrician so you should continue to use your pediatrician when typical childhood illnesses arise; however, it may be helpful to talk with your DAN! before giving any medication that your pediatrician has prescribed.
As I mentioned before, you are a partner in this and your DAN! should welcome conversation, input and take into consideration any recommendations from you. (At least...this is what I think an effective DAN! does). It's hard to not be intimidated by a white coat, but you really are a valuable ally here and the more you learn about this process, the more effective you can be at your meetings. If getting into the nitty-gritty of the protocol is not your thing, that's okay, too. You wouldn't be alone in that feeling and your child can still benefit.
Intake Evaluation
(A) Bring:
- Any and all records:
Hospital birth records
Notable doctor visits
Immunization records
All reports from outside assessments
Recent bloodwork
(B) Make a mental note or jot down:
- General health of yourself, spouse and immediate family, noting:
Allergies
Intolerances
Diseases
Autoimmune disorders
Other notable health issues
- Any notable life-changing events that might have directly or indirectly impacted your child:
Death
Divorce
Catastrophe
Adoption
Other trauma
- Any notable events during pregnancy:
Exposures to illness or toxins
Immunizations
Diabetes
Complications
- Any notable events during childbirth:
C-section
Drugs
Breach
Premature
Induction
Immunizations administered before discharge
- Any paperwork from hospital discharge from delivery.
- Basic outline of stages and ages of development.
- Any notable developmental issues:
Delays
Colic
Abnormal responses
- General status of health during development:
Always sick
Always well
Antibiotic history
Other medication history
- When you started food and how that went.
- Any treatment in which your child is currently engaged and how that is going.
- Child's general status now
- List of your child's positive attributes
- List of your child’s issues you want to resolve.
(D) A pad and pencil!
As for tests...well, that really depends on the type of doctor and the intake evaluation but can include:
* OAT (Organic Acid Test): What this test actually consists of depends on the lab. A full OAT tests for
yeast and bacterial metabolites, metabolic functioning, various deficiencies, etc. This is one
example: http://www.greatplainslaboratory.com/home/eng/full_oat.asp
* Peptides: Measures the wheat and milk proteins in urine.
* Hair Test: The results of this test may indicate a heavy metal burden. (Depending on the lab, it is the
arrangement and relationship of this data to each other that indicates potential problems, it is not
necessarily a direct measurement.)
* Stool analysis: Measures microbiology as well as digestion, absorption, inflammation, immunology
etc.
* Urinary Porphyrins: Measures the effects of metals on the body.
* Blood work: Which tests are selected is based on the intake but may contain certain genetic anomalies,
vitamin/mineral levels, amino acid levels, various Immunoglobulin levels, thyroid, vitamin levels, etc.
So...your head should be spinning at this point. There's a lot to take in. Make sure you understand
A: What the Dr. is recommending,
B: Why the Dr. is recommending it (what it’s supposed to do or how it’s supposed to help),
C: How to implement what the Dr. is recommending.
Do not be afraid to speak up. Ask questions and don’t be afraid to ask the Doctor to slow down. Perhaps most importantly…TAKE NOTES!
Conclusion
Biomed is not a sprint for the finish line, but a slow and steady pace forward; a journey made of many tiny steps forward…and a few steps backward. It’s a little like the peeling of an onion; little by little, layer by layer, we unravel our children’s complex story and with each success and failure we put a piece of the puzzle into place and begin to put together a picture of their unique composition.
More Information:
http://www.autism.com/index.asp
http://www.autism.com/medical/index.htm
http://www.autism.com/dan/ques2ask.htm Questions for the DAN!
http://www.autism.com/treatable/adams_biomed_summary.pdf “Summary of Biomedical Treatments for Autism” Good summary of the whole picture
http://www.autism.com/danwebcast/presentations/Boston2005--Underwood.pdf: DAN! Protocol presentation
http://www.autism.com/treatable/index.htm List of various biomedical treatments
http://autism.com/medical/research/biomedical/biomedical_onepage.htm Research documenting biomedical problems in Autism
http://www.autism.com/treatable/form34qr.htm parent effectiveness ratings of biomed treatments
http://puterakembara.org/rm/Dr_Jepson.pdf UNDERSTANDING AUTISM: The Physiological Basis and Biomedical Intervention Options of Autism Spectrum Disorders
http://www.autism.com/dan/cluesforparent.htm Clues for Parents Considering the DAN approach
Reading & Resource:
“Changing the Course of Autism: A Scientific Approach for Parents and Physicians” by Dr. Bryan Jepson with Jane Johnson
“Healing the Childhood Epidemics:Autism, ADHD, Asthma, and Allergies” by Dr. Kenneth Bock
“Children With Starving Brains: A Medical Treatment Guide for Autism Spectrum Disorder” by Dr Jaquelyn McCandless
“Biological Treatments of Autism and PDD” by Dr William Shaw
“Autism: Effective Biomedical Treatments (Have we done everything we can for this child?)” by Jon Pangborn and Sidney Baker.
Stories of Hope and Recovery:
http://www.autism.com/treatable/recovered/recovered.htm
- Footnotes -
[1]Venables, S., The Independent London, (28 November, 2006). “Bernard Rimland: Psychologist researcher into autism who overturned the theory that it was a reaction to bad parenting.” Downloaded 20 December, 2009 from Autism Research Institute http://www.autism.com/ari/rimland/rimlandlondon.htm
[2] Scientific Foundations of a Defeat Autism Now! Protocol: http://www.autism.com/dan/scientificfoundations.htm
Research Documenting Biomedical Problems in Autism – Feb 2009: http://autism.com/medical/research/biomedical/biomedical_onepage.htm
[3] Defeat Autism Now!—A Project of the Autism Research Institute. http://www.autism.com/dan/index.htm
[4] “Why do I pursue medical treatment for my child’s autism?” http://www.autism.com/medical/autism_medical.pdf
[5] Scientific Foundations of a Defeat Autism Now! Protocol: http://www.autism.com/dan/scientificfoundations.htm
