First Things First
In the American Academy of Pediatrics Physicians’ references, there are very few “standards of care” for children affected with autism. Standards of care are used to define necessary treatments by health insurance companies and the providers of services and treatments. In addition these standards are created so health insurance companies know what to pay for and more significantly, what not to pay for.
Since there are few standards of care for children affected by autism, a lot of medical testing and treatments that are considered cutting edge are also considered as “alternative medicine.” This is extremely important because many times if treatments and testing are determined as beyond standards of care, the costs for testing and treatment may be left up to PARENTS. (Please read Health Insurance Reimbursement and Who Pays for What?)
In last updated American Academy of Pediatrics (AAP; last updated October 2007) Standards of Care, the section on autism is very thin. It states the following should be done:
- Look for brain abnormalities – MRI
- Test for Lead poisoning
- Test for seizures with a 24 hour EEG (Studies indicate 1/3 of children with autism have seizures at some point in their life.)
- Look at genetic Tests for Landau Kleffner, Rhetts Syndrome, Fragile X and other rare disorders.
- Test for allergies, consider dietary intervention (new to this revision)
- Referral for gastrointestinal issues (new to this reviewion)
- THAT’S IT!
Parents and professionals need to know what is listed in the American Academy of Pediatrics Standards of Care for Autism.
Many professionals treating children on the autism spectrum understand that baseline medical testing, family intake, and a complete exam of the child will help you understand that autism is not just a neurological disorder but is a very BIOLOGICAL disease as well. This single thought causes much controversy in the autism and medical communities.
Dr. Jerry Kartzinel reports after treating over 2,000 patients, there are many biological issues that could be affecting children on the autism spectrum.
The list of common biological issues include:
Common Gut Issues
- Inflammatory bowel disease
- Improper food absorption
- Dysbiosis of the gut (due to bacteria and yeast issues)
- Sulphanation defect
- Nutritional problems (including improper protein absorption)
- Food opioids (this is the need for a gluten/casein free GFCF diet!)
- Leaky gut
- Immune dysfunction
Brain & Blood Disorders
- Purine disorders
- Heavy metal toxicity
- Persistent measles virus (or other viral issues – i.e. Lyme, HPPV6)
- Brain blood perfusion
- Brain autoimmunity
- Elevated ammonia levels
- Serotonin Defects
- Lyme Disease
- Melatonin defects (which leads to sleep disorders)
- Thrombophilia (tend to clotting of blood)
- Omega 3 deficiency
- Dopamine effect
- Chromosomal issues (this is rare)
- Mitochondrial disease/disorders
- And other new issues are being investigated regularly
Before parents panic, not all children with autism have all of these problems! But rather, children with autism typically have a combination of some of the above disorders that CAN be addressed through proper medical testing and treatment.
Some of the testing my family has done are:
Special Notes On Medical Tests
- Doctors must prescribe these tests. You cannot do these by yourself. Do these tests with the direction and interpretation of a good DAN! doctor– they can be found at the Autism Research Institute or in the Provider Directory.
- Your child may not require all these tests or he/she may require additional tests (such as a QEEG, Spect Scan, etc.)
- Each doctor has a preference with labs
- Some will review tests done by other doctors in previous years or by different labs
- Some won’t! (because of $$$$)
- Health insurance comments:
- Read the “Who Pays for What?” chapter in this guide.
- Check with your insurance provider on coverage BEFORE starting a therapy or getting a test done regarding reimbursement
- NO will always be the first answer and it is NOT the last.
- There are some tests that may need to be done annually:
- Allergy and food sensitivities
- Comprehensive stool
- Plasma sulphate/cysteine
- Liver/kidney functions
- Complete Blood Count (CBC) and Red Blood Cell Count (RBC)
- Testing done more frequently (if issues or chelating):
- Comprehensive stool
- Toxic metals (when chelating)
Read more information on medical testing and treatment health insurance reimbursements.
How Are Treatments Selected?
- Treatments are selected based on family history & patient intake (symptoms and history)
- Medical test results (current and past)
- What the child has responded to positively and negatively provides important clues
- Doctors should make a case for going after priorities based on the parents’/child’s issues
- You should help set priorities
- A good doctor will help you prioritize as a team
Special note on “low hanging fruit” – doctors will make some prioritizations of issues based on parent feedback, a patient exam,and testing on what to address first and why it is important to tackle these items first.
What Treatments Are Available?
Alternative treatments in addition to AND BEYOND the American Academy Pediatrics Standards of Care is available. Searching for a caring, competent, strong doctor is recommended as a first and important step into biomedical testing and treatment plans. Often treating the co-morbid condition (medical issue that is outside autism) and working within those stated parameters will be a better route to take. There is more information on this topic in the Health Insurance Reimbursement Tips.
An excellent resource from Lewis Mehl-Madrona, M.D., Ph.D. has been outlined to offer different treatments and links for additional information all in one place.
Commonly used treatments include:
- Metal detoxification (chelation)
- Gastro assessment and treatments
- Assessment & treatment for metabolic disorders
- Nutritional therapies (supplements)
- Oral, topical and Push IV (GO IN THIS ORDER!); for example: B-12, Vitamin C, Glutathione
- Hyperbaric oxygen treatments (HBOT)
- Growth factor and transcription factors
- IV & oral immunoglobin therapies
- Bio & neurofeedback
- Somatic & listening therapies (Tomatis, AIT-auditory integration training, Berard method)
- Craniosacral & chiropractic therapies
- Pharmacology (use as a last step, please)
- There are many, many more… these are the most common.
It is important to note that it is recommended that you do not set off to try them all at once! Medical testing results will identify what to do first and what is a “maybe later” treatment!
Autism Research Institute has surveyed thousands of parents for feedback on biomedical intervention.
Your biomedical intervention and treatment journey for your child will be a long road, but well worth the efforts. Results come with time, hard work, and consistency. Please keep looking for answers that are unique keys to unlocking great potential for your child. And remember, do no harm.
What Specialists Do What?
Typically, children on the autism spectrum will see more than one doctor in their journey. The typical physicians sought include:
- General pediatricians are needed for common childhood health issues such as colds, the flu, ear infections, annual check-ups, emergencies, etc.
- DAN! doctors for helping with alternative treatment plans (NOTE: general pediatricians and DAN! doctors can be the same person. This path is recommended, if possible.)
- Other specialists may include: gastrologists, allergists, neurologists, opthamologists, audiologists, etc. that specialize in specific issues/areas as they relate to your child and are very important to the overall process. These specialists are typically recommended by your DAN! doctor or pediatrician.
- Be sure to share ALL tests results with all doctors on the team!
Parents should do their best to identify what medical issues are present in their child. Many treating doctors have a patient intake form that allows families to put down their concerns and set priorities.
Parents should also read up on the issues that may be affecting their children. Here is a list of the recommended web links and books:
- The wonderful Autism Research Institute publishes a DAN! (Defeat Autism NOW!) Protocol manual. This manual outlines the treatment guidelines for physicians with resources and guidelines. For a complete copy of the treatment protocols, go to www.autism.com/ari and click on DAN! for information. It is recommended that you buy one for yourself and your child’s doctor.
- Unraveling the Mystery of Autism and Pervasive Developmental Disorders, Karyn Seroussi, 2000
- Biological Treatments for Autism & PDD, William Shaw, MD, 2003, 2nd Edition
- Is This Your Child? Discovering and Treating Unrecognized Allergies in Children and Adults, Doris J. Rapp, 1992
- Children with Starving Brains: A Medical Treatment Guide for Autism Spectrum Disorders, 2007 Edition, by Jacquelyn McCandless, MD
- Autism: Have We Done Everything We Can for this Child? Effective Biomedical Treatments, by Sidney Baker, MD and Jon Pangborn, MD
- What Your Doctor May Not Tell you About Vaccinations, by Stephanie Cave, MD
- Evidence of Harm, by David Kirby
Some Final Words
Biomedical treatment and care should be PART of your intervention plan for a child affected by autism. In addition to biomedical intervention, please consider traditional therapies such as one-on-one behavioral intervention, ABA, VBA, speech and occupational therapy, play skills, and social skills. Both a biomedical intervention AND a BEHAVIORAL therapy plan are part of a total solution for your child.
Disclaimer: Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources, and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s. Nothing in this document should be construed as medical advice. Always consult your child’s doctor regarding his or her individual needs.