A Beginner's Guide To Medical Interventions for ASD
Autism is diagnosed based on external behaviors, but there are many common, treatable comorbid medical conditions. A comorbid condition is an additional disease or disorder. Treating those comorbid conditions often results in the reduction of behaviors and can even lead to a loss of the autism label for some.
There are many comorbid conditions. Please note that your child is not likely to have ALL of these conditions. A few of the most commonly found conditions among individuals with autism are:
- Gastrointestinal: Inflammatory Bowel Disease; Crohn’s Disease; GERD (Gastroesophageal Reflux Disease); Colitis; and symptoms like improper food digestion and absorption, dysbiosis of the gut, and leaky gut.
- Brain and blood disorders
- Mitochondrial disease or dysfunction
- Methylation defects
- Heavy metal toxicity and detoxification issues
- Persistent measles virus
- Serotonin defects
- Melatonin defects
- Omega-3 deficiency
- Dopamine receptor issues
Doctors may prescribe many medical interventions specifically for comorbid disorders. They are not treatments for autism. However, when comorbid disorders are treated appropriately, the symptoms of autism can be decreased in number and severity.
Treatments for ASD
Dietary interventions have a very high success rate and are proven to make other treatments and therapies work better, but there are a number of diets to address a number of issues. Learn more about diets here. Know that most MAPS doctors consider dietary intervention a foundational treatment, and some will not see you as a patient unless you follow one of the diets (GFCFSF at a minimum).
Most individuals with ASD have allergies due to their weakened immune systems. The two most frequently used blood tests to assess allergies are IgE and IgG antibodies. IgE is a histamine reaction allergy that presents with physical symptoms like hives, redness, rash, swelling, etc. IgG is an immune system allergy that presents more with behaviors and illness due to immune suppression. A person can have both types of allergies. More on allergy tests at www.tacanow.org/family-resources/food-allergy-testing/
Vitamins, minerals and supplements
The following are the most commonly used supplements for individuals with ASD. Dosages are set by the doctor, based on weight, preferably after testing shows a need.
- Calcium is a MUST if the child is on a dairy-free diet. There is not enough calcium in any multivitamin, so this must be given in a separate supplement.
- DMG/TMG raises glutathione and helps speech production.
- Enzymes aid digestion.
- Essential Fatty Acids (EFAs), Omegas 3 and 6 (DHA, EPA) aid in brain development and relieve depression.
- Folic/Folinic acid aids oxidative stress/glutathione/methylation.
- Iron should be given only if tests show a need.
- Magnesium aids sleep and anxiety.
- Melatonin aids sleep.
- Probiotics improve immune and gut function.
- Vitamin A suppresses viruses, and aids the thyroid. It’s found in cod liver oil. If high dose is prescribed, take with Vitamin K.
- Vitamin B12 (MethylB12, MB12, Methylcobalamin) is usually given in shots. Hydroxy B12 is used if MB12 isn’t tolerated.
- Vitamin B6 is the most widely used supplement with ASD patients. It helps with detoxification, glutathione, neurotransmitters, blood and enzymes. Take with magnesium.
- Vitamin C aids the immune system and detoxification.
- Vitamin D3 aids calcium absorption, boosts the immune system, and is anti-inflammatory.
- Vitamin E aids the immune system and detoxification.
- Vitamin K should be used if the patient is on high-dose Vitamin A/cod liver oil.
- Zinc stimulates appetite and improves the immune system.
- Glutathione IV is most effective to aid detoxification, but Setria oral GSH has proven effective also.
- Neurotransmitter calmers (GABA, taurine, EFAs, B6, inositol, 5HTP, Magnesium, l-theanine) ease anxiety. More on anxiety at http://www.tacanow.org/family-resources/anxiety-in-autism-spectrum-disorders/
- Carnitine provides mitochondrial support to make energy.
- NADH (B3) and Ribose aid oxidative stress/glutathione/methylation.
- N-Acetyl-Cysteine (NAC) is a form of cysteine, an amino acid that is the rate-limiting factor in the production of glutathione. N-Acetyl-Glycine may be used if the patient doesn’t tolerate NAC.
For more on dosages, see http://www.tacanow.org/wp-content/uploads/2013/02/Summary_of_Treatments_for_Autism-2013.pdf and for more supplements see http://www.tacanow.org/wp-content/uploads/2010/08/KirkmanRoadmap-PDF.pdf
Other medical treatments
Constipation/Diarrhea: Up to 70% of individuals with ASD have GI issues, including chronic constipation and/or diarrhea. Learn how to treat both at http://www.tacanow.org/family-resources/the-poop-page/
Exercise: One of the top-rated treatments for individuals with ASD is cardiovascular exercise. Research shows decreased blood flow to autistic brains; exercise also helps with sleep, depression, anxiety, muscle tone, gait, detoxification, and more. Learn more at: http://www.tacanow.org/family-resources/teens-with-asd-extracurricular-activities/ and http://www.tacanow.org/family-resources/lets-get-moving/
Hyperbaric Oxygen Therapy (HBOT): HBOT is a treatment to reduce inflammation, increase blood flow, and regenerate tissue. Used in hospitals worldwide for TBI (Traumatic Brain Injury), diabetes, burn victims, sports injuries, and other healing, HBOT can be done in the home (soft-sided mild HBOT) or in doctor’s offices and hospitals (hard chambers). Learn more at http://www.tacanow.org/family-resources/hbot-for-asd/
IVIG: Immunoglobulin given by IV infusion, usually in a hospital setting. Rebuilds immune system.
Chelation: Removes heavy metals, if needed. http://www.tacanow.org/family-resources/chelation-and-autism/
Yeast treatment: Yeast overgrowth is VERY common in ASD. It’s a product of a weak immune system and usually a high-carbohydrate diet. Antifungal medications kill yeast, but reducing carbohydrates in the diet is the best treatment. Read more at http://www.tacanow.org/family-resources/what-is-yeast-overgrowth/
Removing toxins: For people who cannot detox properly, consuming clean foods, removing toxins from home environment such as plastics, flame retardants, neurotoxins and known cancer-causing ingredients.
Seizures: – Seizures are the most prevalent neurological disorder associated with ASD. While 1-2% of children in the general population develop epilepsy, the prevalence of epilepsy in ASD is much higher, with estimates varying widely from 5% to 38%. Some individuals with ASD develop seizures in childhood, some at puberty, and some at adulthood. Although the prevalence of seizures by age is not well studied, recent studies suggest the risk of seizure remains high into adulthood. Seizures are associated with increased mortality and morbidity in individuals with ASD and are the leading cause of mortality in adults with ASD.
PANDAS: Pediatric Autoimmune Neuropsychiatric Disorders associated with Streptococcal Infections, or PANDAS, is a common autoimmune disorder with far-reaching movement, behavioral, and cognitive consequences. Immune-mediated OCD, tics, and neuropsychiatric disorders can affect child, adolescent, and adult populations and should always be considered when specific signs and symptoms emerge.
What does the American Academy of Pediatrics (AAP) suggest for ASD treatment?
Risperdal aka Risperidone.
A guide to specialists
Standard pediatrician: While they rarely offer help for autism or even the co-morbid issues, don’t dump your primary care physician altogether. They often have longer hours in case of emergency; take insurance; can write prescriptions for needed therapies like speech therapy; do annual physical exams for school; and sign off for recreation activity programs. Also, autism or not, kids can break bones or get standard illnesses that your pediatrician can treat.
Developmental pediatrician: Good for a medical diagnosis of autism. Most do not treat autism, outside of prescribing sedative medications and traditional therapies.
Family practice physician: Many of our families prefer family practice physicians over staying with a pediatrician. They have found that family practice physicians don’t push vaccines or psychotropic medications at every visit and have a more welcoming atmosphere to people with disabilities.
Medicaid doctor: Even if you never see this doctor for anything in particular, in order to keep your Medicaid in most states you must visit this doctor once a year. The doctor can write therapy, medication, and diaper prescriptions, as well as perform physicals and sign off for recreational activities.
MAPS doctor: MAPS is the Medical Academy of Pediatrics Special Needs. MAPS doctors specialize in the medical issues commonly found in individuals with autism, using a functional medicine approach. A group similar to MAPS was DAN! (Defeat Autism Now), but they closed in 2011.
Gastroenterologist (GI): While MAPS doctors can do a lot for GI symptoms, only a GI doctor can perform an endoscopy and colonoscopy, so you will need to see a gastroenterologist. Please note that there are only a handful of GI doctors in the United States that treat kids with autism properly, so contact your closest TACA chapter, or join TACA-USA for a recommendation.
Neurologist: You will need to see a neurologist for an MRI or EEG, but unless your child has seizures or other neurological conditions, neurologists do not treat autism. A regular pediatric doctor CAN prescribe these tests (so you don’t need to visit the neuro too), but pediatricians rarely will prescribe the proper 24+ hour unmedicated EEG without a fight, so make sure the doctor will prescribe these before you make an appointment. The standard recommendation, a 20-minute EEG, is useless unless your child is having grand mal seizures every 15 minutes or more.
Immunologist/Allergist: MAPS doctors can do the same tests these doctors can run, but if you have a rare or very complex issue, you may need an immunologist or allergist in addition to your MAPS doctor. PANDAS or Lyme generally need more than just a standard immunologist, so you’ll need to look for one who specializes in those issues, if needed.
Nutritionist: Nutritionists can help you get started with dietary interventions. If you combine diets (like GFCFSF, low-carb, Feingold, rotation, etc.) or factor in multiple allergies, you will find there are no lists of foods readily available for every combination, so consulting with a nutritionist can be an easy way to create a healthy list of allowed foods, and keep an eye on nutrient levels.
Geneticist: Most genetic tests can be ordered by other doctors, but few feel comfortable interpreting the reports of complex tests. Many MAPS doctors use basic genetic tests like 23&Me, but if the doctors feel your child needs further testing, they will refer you to a geneticist.
Mitochondrial specialist: Because individuals with ASD often have mitochondrial issues, you may need to see a specialist for a diagnostic muscle biopsy. Most are geneticists, but not all geneticists are well versed in mitochondrial disease with autism.
Finding a doctor
You can find doctors online or on your insurance plan’s list, but recommendations from other parents save time, money and effort. Research prospective doctors by contacting your closest TACA chapter, joining our Yahoo group, going to a conference where the doctor you are considering is presenting, watching conference videos online, or viewing webinars.
Be prepared for your appointment so you get the most out of it.
Not all doctors are created equal, so make sure you know how to handle the relationships with these professionals.
Don’t get caught up in new fads, “cures” or research protocols without a reasonable expectation that the treatment will benefit your child. If a doctor says, “ALL of my patients do well with this treatment”, be very wary, as there is no treatment that benefits 100% of patients. Before you begin or pay for treatments, learn about them so you don’t get sucked into something that may not benefit your child. Research is important, but if you are paying for any testing or treatments, it needs to have a good chance of helping YOUR child, rather than just the research project.
Many doctors have long waiting lists, so get on the list as soon as possible and get busy getting ready for the appointment.
An example of a standard list of tests ordered by a MAPS doctor
(ALL of these tests can be done through insurance-covered labs):
- The Complete Blood Count (CBC) and Comprehensive Metabolic Panel (CMP) check for anemia, platelet count (a high count is consistent with inflammation), and liver and kidney function.
- Thyroid function. A significant number of children with autism also have hypothyroidism, which can mimic some of the symptoms of autism and impair development. A simple blood test called TSH can check for this problem.
- Iron deficiency can cause inattention and concentration problems. Low iron is also linked to lowered IQ. Iron supplementation in children with attention deficit hyperactivity disorder (ADHD) who have low iron levels has been shown to improve attention compared to a placebo, and iron supplementation in children with autism has been shown to improve sleep.
- Ammonia and lactic acid are initial tests that can help determine if mitochondrial dysfunction exists, which can lead to low energy production and hypotonia (low muscle tone). Mitochondrial dysfunction is potentially treatable with supplements like coenzyme Q10 and L-carnitine. More at http://www.tacanow.org/family-resources/autism-and-mitochondrial-function/
- A cholesterol count less than 145 mg/dl in typical children has been shown to increase defiance and irritability and increase the chances of school suspension by three-fold. Supplementation with cholesterol in some children with autism may be beneficial.
- Cysteine is the precursor to glutathione and is the rate-limiting step for glutathione production. Low levels of cysteine reflect impaired glutathione production or increased glutathione utilization due to oxidative stress.
- Lead has been shown in some studies to contribute to autistic behaviors in some children. An elevated blood lead level reflects ongoing exposure and should prompt an investigation to find possible sources of lead in the house or environment.
- Magnesium has a calming effect, and lower levels have been found in children with ADHD and autism. Magnesium supplementation can decrease hyperactivity and improve certain autistic behaviors.
- A small percentage of children with autism have elevated testosterone, which can lead to aggression.
- The organic acid panel is a specialized test that can measure markers of yeast, Clostridia, and other markers such as vitamin levels and mitochondrial function.
- Urinary porphyrin concentrations can reflect increased heavy metal or pesticide levels in the kidney and are markers of the metal burden in the body.
- Urinary neopterin is a marker of inflammation and tends to reflect autoimmunity in some children with autism. Elevated neopterin often predicts positive responses to anti-inflammatory treatments.
- Urinary oxidized DNA and RNA are markers of oxidative stress inside the cell, and children with elevated levels often have improvements with antioxidants.
- Urinary isoprostane is a marker of oxidative stress outside the cell. Again, antioxidants can be helpful when this is elevated.
- Stool testing can check for the presence of inflammation, dysbiosis (increased levels of yeast and abnormal bacteria), digestion, and absorption.
- Other tests include: plasma amino acid panel, RBC (red blood cells), Plasma lactate, Plasma Acylcarnitine panel (Quantitative), Free and total Carnitine, Creatine Kinase, Vitamin E, 25-Hydroxy Vitamin D, Zinc, C-reactive Protein, TNFa, IgG and IgE allergy panels, immune markers – especially IgA, viral titers for HSV 1 and 2, HHV 6, EBV.
- Genetics: MTHFR, Fragile X, Rett Syndrome, Wilson’s Disease, mitochondrial dysfunction. Also Chiari1, PON1, but only if insurance pays as they are very costly and very few people have these.
How can parents afford these treatments?
Because the DSM5 (the book of diagnostic symptoms of disorders and diseases) does not list any medical symptoms, you cannot bill medical tests and treatments under autism if you want them to be covered by insurance. Office visits, lab tests, treatments and therapies all need to be coded under the comorbid medical condition – immune, gastrointestinal, seizure, allergies, etc.
How to use your health insurance: http://www.tacanow.org/family-resources/health-insurance-coverage-on-a-budget/
Medical Treatment On-A-Budget: http://www.tacanow.org/family-resources/biomedical-treatment-on-a-budget/
Try before you apply: http://www.tacanow.org/about-taca/try-before-you-apply/
Community scholarships: http://www.tacanow.org/about-taca/taca-scholarships/ and http://www.tacanow.org/wp-content/uploads/2012/06/autism-grants_2012-07.pdf
Everything is tax deductible: http://www.tacanow.org/family-resources/tax-strategies-for-parents-of-kids-with-special-needs/
Medical Travel On-A-Budget http://www.tacanow.org/family-resources/traveling-with-your-children-with-asd/
Evaluating progress is a key step in restoring health. You need to know what is working and what isn’t, so that you can move on to new issues, or reduce treatments that are no longer needed, thus saving money, time and effort. TACA has many charts, forms and journals to help you stay on track.