4 THE AUTISM FILE The Gut • • • • • • • • • • • • • • • • • • Measles. Epithelial damage. Dysbiosis. Inadequate enzyme function DPP-1V enzyme deficiency. Secretin success (suggesting pancreatic dysfunction). Reflux. Gastritis. Leaky gut. Diarrhoea. Constipation. Parasitic and yeast infection. Poor digestion of proteins and fats (85% of autistics are malnourished). Known deficiencies of sulphate. Vitamin B deficiencies. Zinc deficiency. Magnesium deficiency. Vitamin A deficiency. Deficiencies in amino acids and essential fatty acids, namely omega 3s (EPA and DHA). • • • • • • • • • • • • The Immune System Increased TH2 ratio making them more susceptible to allergies and poor at eradicating viral. Fungal, bacterial and parasitic pathogens. Auto-immune antibodies to myelin basic protein. Reduced Natural Killer cell function. Increased pro-inflammatory cytokines (TNF-a, IL-1b , IL-6). Complement deficiencies (presence of gram negative bacteria, parasites and candida). Atypical elevated antibodies to common pathogens, eg herpes viruses 1 through to 7. Epstein Barr. Cytomegolovirus. Mycoplasma. T-Cell deficiencies including subsets CD1,2,3,4,8,16,25 and 56. These immunological changes affect brain chemistry especially in the cerebellum and sensory components of the brain and most autistics have altered sensory perception. • • • • The Brain Autoimmune antibodies to myelin basic protein (proteins that make up the sheath surrounding the neurons). Abnormalities in neurotransmitter levels, eg dopamine, serotonin, melatonin. Elevated norepinephrine and epinephrine. Seizures. Perfusion abnormalities within the brain, ie poor blood flow to some areas of the brain. THE AUTISM FILE 5 • • • • • • • • • • • The Blood Hyper ammonemia. Increased levels of undigested proteins. Increased coagulation (aggregation of red blood cells) induced by lectins and inflammatory cytokine expression. Metallothionine deficiencies. Phenosulphur transferase enzyme deficiencies or dysfunction leading to low plasma sulphate levels. Purine metabolism defects increasing uric acid levels, blood toxaemia (elevated toxins in the blood system). Liver stress and its association with low levels of glutathione. Carnitine deficiency affecting mitochondrial fatty acid oxidation. Increased nitric oxide which inhibits the Krebs cycle enzyme aconitase. Other mitochondrial defects such as low levels of NADH, Co Enzyme Q10. Increased levels of heavy metals namely cadmium, mercury, aluminium, lead and arsenic. As one can see there are a great number of known imbalances, abnormalities and deficiencies found in autism. These all lead to a disturbed biochemistry resulting in differing forms of autism. Many parents ask me what tests and treatments have we done for Billy. Billy like all others suffering from autism is a unique individual and therefore we needed to conduct tests that were specific to him. From the early use of secretin we have come a long way, using diagnostic testing as a method for evaluating any abnormalities he has. This is imperative and I urge all parents with autistic children to complete a range of tests that you feel are beneficial to assess your child. Where to start? It is important not to rush into conducting tests but to think through the issues. Should the tests be invasive or non invasive, ie blood or stool, urine and hair? Think through the cost implications and whether the abnormalities found can actually be treated. I hope you will find the following steps helpful. 6 THE AUTISM FILE 1 2 Family history questionnaire Look for problems already exhibited by parents and grandparents and the causes behind the illnesses. Pay particular notice of inflammatory disorders, autoimmune disorders and allergies. The following list contains some of the most common illnesses found to be present in parents and grandparents: rheumatoid arthritis, eczema, asthma, diabetes, allergies, bowel disease, respiratory illness, psoriasis, depression, heart disease, migraine, sinusitis, lupus, chronic fatigue syndrome. These illnesses can indicate a genetic predisposition that may affect the immune system making a baby vulnerable to immune insults. Pregnancy Look at your pregnancy and evaluate the following: Treatments during pregnancy (especially anti-biotics). How many amalgam fillings have you had. Did you suffer from thrush or candidiasis? Do you have allergies? Did you experience food cravings during pregnancy? 3 4 5 6 Birth Was there a delayed delivery, ie baby stressed during delivery or ‘trapped’ in the birth canal. Was there any possibility of blood starvation during delivery? What was the APTAR rating and were there any concerns? 7 Breast or bottle fed? Treatments What treatments were used and for what conditions? Note everything from Calpol, Nurofen for infants, steroidal creams, or antibiotic use, eg Amoxycillin, Cephalexin. This information is extremely important – you are entitled to obtain any relevant data from your child’s General Practitioner. You need to know the course of treatment, when it was given and for what reason. Did the treatment work? During the feeding did your child have a good suck or was it weak? What sort of milk formula was used, cows’ milk, goat, soya, hypoallergenic, eg Nutramigen? Did your child suffer from colic, reflux, vomiting, constipation, diarrhoea during its first four months? Vaccination What vaccines did your child receive in its first year, Vitamin K, TB, DPT, HIB, polio at two, three and four months, meningitis C and MMR? Did you notice any reactions to these vaccines, eg rashes, temperature, listlessness, vomiting, diarrhoea etc? Make notes. Health and medical history in first year Was there evidence of eczema, asthma, red ears, swollen abdomen, diarrhoea/constipation, or glue ear? Respiratory tract infections, eg bronchitis, sinusitis? Any known illnesses derived from viral infections, eg chicken pox? Did your child sit, hold head high, crawl and walk on time? Were there any concerns over motor co-ordination skills? 8 MMR vaccine Was your child fit and healthy at the time the MMR vaccine was given? Was your child free from colds, runny nose, at least four weeks after the last course of antibiotics. Did your child have eczema or asthma at the time? Were his/her bowel movements normal? Did your child react to the vaccine immediately? Did your child develop problems soon after the vaccine, ie diarrhoea? Did your child lose speech, co-ordination, interaction skills etc after the vaccine? What was the health of your child like after the MMR vaccine? Record this data for at least four months including medical treatment? THE AUTISM FILE 7 9 First indications When did you first notice there may have been a problem with your child? From birth? From 2–6 months? After the MMR vaccine? At what age did you notice hearing problems. Poor eye contact. Loss of language. Answering these questions will also enable you to look at the first 18 months of your child’s life and the family history into which he/she was born Next, I have listed the symptoms of autism under the following headings: Gut functions, Immune system, Allergic reactions, and General health. This will give you an idea of where to start looking for your child’s problems. Various tests are available on the market and I have listed what I think are the most important tests for each category. Each list contains a number of symptoms followed by tests that may give you some of the answers. For more details of the testing organisations please se the final chapter of The Autism File Book Issues 1–5. Tests highlighted in bold are ones we have used identify problems with our autistic son, Billy. Physical coordination problems. rapped in own world – T daydreaming. Loss of pointing skills. Irrational fears? Repetitiveness. Temper tantrums. Aggression. Impaired face recognition, eg difficulty understanding emotions, didn’t smile back at you. Stimming behaviour? Toe walking. Difficulty eating. Specific food selection in diet. Abnormal sleep patterns. Unprovoked crying. Staring spells. Uncontrolled bowel movements. Excessive night sweats. Pallor. Puffy face. Dark eye circles. All of the above are associated with autism and you need to identify when these were being displayed by your child in order to ascertain at what age your child became autistic. I still believe some autistic children were born with this condition but I am also very, very confident 85% acquired it. Having identified what abnormalities, deficiencies and dysfunctions are present, you can now consider what tests to conduct and what treatment protocol must be put in place thereafter. 8 THE AUTISM FILE Gut functions 1 Diarrhoea/constipation 2 Dysbiosis 3 Light coloured stools 4 Bloatedness 5 Excess wind 6 Red anus 7 Itchy anus 8 White coloured tongue 9 Bad breath 10 Undigested food in gut 11 Rapid passage of food through the gut. 12Ammonia smelling stools (bleaching or colouring of pants) 13 14 15 16 17 Reflux/gastritis Abdominal pain Dark eye circles Leaky gut? Overuse of antibiotic treatment. Suggested tests (1–12,14,17) Comprehensive Digestive stool analysis with parasitology (Great Smokies Laboratory). Indican (indicates abnormal flora). (15) D-Glucaric acid (toxic load and liver stress), MDA (indicates free radical pathology). Live Blood analysis. Observation of blood to look for coagulation, candida and parasites and other abnormalities (ARTC). Organic acid test (ARTC or Great Plains Laboratory). (16) Intestinal Permeability (Sunderland University, David O’Connell, ARTC). Ammonia (ARTC) Immune system 1 Eczema 2 Asthma 3 Fever 4 Night sweats 5 Pallor 6 Recurrent illness 7 Recurrent sore throats 8 Very sensitive to touch at base of neck 9 Ear problems 10 Cold hands and feet 11 Mucus in stool. 12Blood in stool. Suggested tests Blood coagulation tests and Live blood analysis (ARTC). IgM testing for ongoing infections, ie Herpes 1 through to herpes 7. Epstein Barr virus, Mycoplasma, Streptococcus, Cytomeglovirus, Pro-inflammatory cytokines, ie TNF-a, IL-1b, IL-6 (The Doctors Laboratory – contact Dr Malek). CD8 and CD4 (ratio of Th1 and Th2 cells). Immunoglobulins, Lymphocyte Evaluation (David O’Connell). IgM antibodies to MMR vaccine (David O’Connell). Autoimmune antibodies to Myelin Basic Protein, antibodies to measles (Dr Vigindra Singh). (11,12) Severe gut-related disorders – seek advice and testing from a gut enterologist (Royal Free Hospital). Allergic reactions to foods 1 2 3 4 5 6 7 8 9 10 Reactions to cows’ milk. Red ears after eating. Flushing in face. Eczema. Hyperactivity. Running around in circles. Tantrums. Jekyll and Hyde moods. Addicted to certain foods. Nasal congestion. Suggested tests (All of the above). Food Allergy Panel (96 foods, ARTC ). Brakespeare Hospital (contact Dr Jean Monro specialists in allergy testing and treatment). General health 1 Low percentile rating for weight. 2 Signs of malnutrition. 3 Bloated abdomen 4 Ribs showing 5 Poor hair condition 6 White marks on fingernails 7 Brittle nails 8 Poor sleep patterns 9 Goose bumps on back of upper arms 10 Dry skin 11 Listlessness and general fatigue 12Excessive thirst 13Frequent urination Suggested tests (5,7,8,9,10,12,13) All can be tested for at the ARTC. (11 and general health) Heavy Metal test, Essential Fatty Acid Test. (7 and general health) Mineral analysis, (8) Sulphate. Neurotransmitters. EGOT (test for Vitamin B6 function). (11) Ferritine. (General Health). (General health) Vitamin profile, Trace elements, Amino acid profile, Organic acid test (Great Plains Lab or ARTC). THE AUTISM FILE 9 Other alternative approaches to looking at General Health disorders may be uncovered by the BEST System, Psionic hair analysis, Kinesiology etc. Once you have completed the tests the results will come back with an interpretation of what abnormalities have been found and what forms of treatments are best suited to your child. The directors of these establishments have promised their full co-operation with the interpretations and will also be available for consultation if you have any questions or queries. Billy’s treatment We have worked very hard on getting Billy’s treatment protocol right for him and in order to ascertain this we have completed the tests shown previously highlighted in bold. I shall now summarise his overall treatment programme under the following headings. Please remember this is individualised for Billy and I am in no way suggesting that this will work for your child but it is merely an indication of what we have learned and what we are now doing. • • • • • • • EDUCATION SPEECH THERAPY. BEHAVIOUR/SOCIAL INTERACTION EXERCISE BATHING DIET DRINK Mainstream with 1–1 tutor. 1 hour per week. Involvement with typical high functioning peers. Minimum of 30 minutes per day of cardiovascular exercise, swimming, bike riding etc. Hot, with Epsom salts. Fluoride free toothpaste. Gluten/casein free. Chemical free, ie no MSG, colourings, preservatives, NO foods to which he is allergic. Bottled water (Vittel). Rice drink. Problem and treatment listing for Billy • • • • • • • • • • • • • • • • • 10 VITAMINS TRACE ELEMENTS AMINO ACIDS ANTI-OXIDANTS/FREE RADICAL SCAVENGERS ESSENTIAL FATTY ACIDS (EFAs) LIVER SUPPORT METALS/MINERALS Chromium, Manganese IMMUNE MODULATION Chisholm Labs BLOOD COAGULATION AND DIGESTIVE SUPPLEMENT CHELATION OF HEAVY METALS ANTI-FUNGAL LEAKY GUT ANTI PARASITIC SULPHATE ANTI INFLAMMATORY GUT DYSBIOSIS HAEMOGLOBIN THE AUTISM FILE Vitasorb b-complex, Multi vitamin/mineral complex, Vitamin-C, Vitamin A (cod liver oil) Trace minerals Seacure l-Glutathione, Vit C Eskimo-3, EYE-Q Milk Thistle Magnesium Taurate, Zinc, Selenium, Molybdenum, Ambrotose. Consider transfer factor from Super enzymes, Houston Enzymes Cilandro, Chlorella, selenium. Consider DMSA Amphotericin-B, Diflucan, Canditox 2 Enteroguard, L-Glutamine, Phyt Aloe Citramesia Epsom salts, Glucosamine sulphate, MSM Evening Primrose, EFAs Probiotics Bio cult, essential E-Coli Floradix The list for Billy’s treatment seems endless but we crush and mix all of these in a bowl and provide either natural fruit juice or a dash of maple syrup to help with its palatability. It is still yuk, believe me. It generally equates to three dessert spoons per day and he has it 30 minutes before his evening meal. We very often ‘pulse’ the ingredients to his potion as I believe providing the same supplements day in day out overloads the receptors. I will miss out a few for three days then reintroduce them on a rotational basis. This then gives Billy time to utilise these supplements rather than excreting the surplus. Autism is a multifactorial disorder and we are treating only those known problems found to be present in Billy through our diagnostic testing. The aim in providing such an extensive list of identified requirements is to restore optimum health. As our children have a highly selective, self limiting diet these nutritional requirements are essential for providing the biochemical building blocks to restore normal functioning. Test, analyse, interpret and test, analyse, interpret again before implementing your protocol. Seek advice and direction from those in the know. We used a nutritionist, a biochemist and two consultants before we formulated our protocol. Prepare your protocols, based on your child’s abnormalities with expert guidance. Observe and monitor your child. Is he/she responding to the treatment? Go low and slow with your supplements at first and then build up the levels to the required dosage. Re-test after three to four months to see if there has been an improvement in your child’s health. We have worked very hard on Billy’s testing and treatment protocols and I am very happy with them now. Billy has made tremendous improvements over the past three years due mainly to his biological treatment protocol. We are not entirely there yet but we shall succeed – there is no doubt in my mind of that. Please note that I am talking to you as a parent of an autistic child – not a medical expert. So please, please seek out the correct consultants, nutritionists, and doctors to help you before you begin. I wish you all every success. The Autism File book containing issues 1 to 5 plus a directory of schools and organisations relevant to autism is now available to order at a cost of: UK £24.95 (includes p&p) Overseas £31.95 (includes p&p). Very limited copies are available – please order by phone on: 020 8979 2525 You can also order on-line (www. autismfile.com) or send in the slip below. Please send me ___ copies of The Autism File book at £24.95 a copy (£31.95 overseas). Name Address Country Post/Zip code Phone Email I enclose payment of £ (cheques payable to The Autism File) The Autism File, PO Box 144, Hampton, TW12 2FF, England THE AUTISM FILE 11