Overview of Autism

1. Overview of Autism

3. These PowerPoint slides were made available from the Autism Research Institute www.Autism.comARI�s Toll-Free Resource Call Center: 866.366.3361

4. These slides were adapted with permission from a presentation developed by James B. Adams, Ph.D. Dr. Adams has a teen-age daughter with autism and is a Full Professor in the Department of Chemical and Materials Engineering at Arizona State University. Dr. Adams currently serves as president, Greater Phoenix Chapter of Autism Society of America and a Board member of the Autism Research Institute. A Word of Thanks

5. Personal background (presenter: enter your background)

6. This information is for educational purposes only and is not intended as medical advice. For medical assistance, please consult a knowledgeable healthcare professional

7. Core symptoms

8. How do they diagnose full-syndrome? DSM-IV Criteria for an Autism Diagnosis DIAGNOSTIC CRITERIA FOR 299.00 AUTISTIC DISORDER A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3)

9. How do they diagnose full-syndrome? 1. DIAGNOSTIC CRITERIA FOR 299.00 AUTISTIC DISORDER � AT LEAST TWO OF THE FOLLOWING Marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction Failure to develop peer relationships appropriate to developmental level

10. How do they diagnose full-syndrome? A lack of spontaneous seeking to share enjoyment, interests, or achievements with other people, (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people) Lack of social or emotional reciprocity (note: in the description, it gives the following as examples: not actively participating in simple social play or games, preferring solitary activities, or involving others in activities only as tools or "mechanical" aids )

11. How do they diagnose full-syndrome? 2. DIAGNOSTIC CRITERIA FOR 299.00 AUTISTIC DISORDER � AT LEAST ONE OF THE FOLLOWING Delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime) In individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others

12. Stereotyped and repetitive use of language or idiosyncratic language Lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level How do they diagnose full-syndrome?

13. How do they diagnose full-syndrome? 3. DIAGNOSTIC CRITERIA FOR 299.00 AUTISTIC DISORDER- AT LEAST ONE OF THE FOLLOWING Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus Apparently inflexible adherence to specific, nonfunctional routines or rituals

14. Stereotyped and repetitive motor mannerisms (e.g hand or finger flapping or twisting, or complex whole body movements) Persistent preoccupation with parts of objects How do they diagnose full-syndrome?

15. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: social interaction language as used in social communication symbolic or imaginative play D. The disturbance is not better accounted for by Rett's Disorder How do they diagnose full-syndrome?

16. How do they diagnose Asperger Syndrome? Same Social and Behavioral Issues as Autism (III) The disturbance causes clinically significant impairments in social, occupational, or other important areas of functioning.

17. How do they diagnose Asperger Syndrome? (IV) There is no clinically significant general delay in language (E.G. single words used by age 2 years, communicative phrases used by age 3 years)

18. How do they diagnose Asperger Syndrome? (V) There is no clinically significant delay in cognitive development or in the development of age-appropriate self help skills, adaptive behavior (other than in social interaction) and curiosity about the environment in childhood.

19. Autism Diagnostic Interview � Revised (ADI-Revised): 2-4 hour interview with parents of child�s history Autism Diagnostic Observation Schedule (ADOS) � one-hour structured and unstructured interaction with child Childhood Autism Ratings Scales (CARS) E-2 Diagnostic Checklist � Parents� checklist scored for no charge. Download pdf file from www.autism.com Diagnostic tools

20. Early onset vs. regression

21. Genetic or environmental cause? Studies of identical twins reveal: Co-occurrence is 40-80%; if 100%, then only due to genes; so genes are important, but so are unknown environmental factors 5-10% chance siblings of ASD children will have autism 25% chance of major speech delay � so carefully monitor siblings Autism is a complex disorder with many contributing factors. While we don't have all the answers yet, you can decrease the risk to younger siblings and future pregnancies by protecting your family from known dangers like environmental toxins and thimerosal in flu shots. From Boyd Haley, Professor and Chair of the University of Kentucky Department of Chemistry: "The EPA safe level for mercury exposure from the diet is 0.1 micrograms/2.2 pounds body weight and the vaccines preserved with thimerosal has 12.5 micrograms of mercury or 125 times the EPA safe level. This makes the vaccine exposure safe if your baby weighs 275 pounds." Also, the thimerosal is injected, not ingested, which makes it more toxic, and it is delivered with aluminum that enhances the neurotoxicity. So it is surprising a physician would be so dismissive and say the thimerosal is �so small it is nothing to worry about.'" Autism is a complex disorder with many contributing factors. While we don't have all the answers yet, you can decrease the risk to younger siblings and future pregnancies by protecting your family from known dangers like environmental toxins and thimerosal in flu shots. From Boyd Haley, Professor and Chair of the University of Kentucky Department of Chemistry: "The EPA safe level for mercury exposure from the diet is 0.1 micrograms/2.2 pounds body weight and the vaccines preserved with thimerosal has 12.5 micrograms of mercury or 125 times the EPA safe level. This makes the vaccine exposure safe if your baby weighs 275 pounds." Also, the thimerosal is injected, not ingested, which makes it more toxic, and it is delivered with aluminum that enhances the neurotoxicity. So it is surprising a physician would be so dismissive and say the thimerosal is �so small it is nothing to worry about.'"

22. No straight lines from genes to behavior Genetic vulnerability + environmental exposure Remember: Genes alone produce proteins � not behaviors There are numerous studies showing the relationship between chemicals in our environment and developmental delays, thyroid disruption, etc. One of the best sources for information on the affects of chemicals in our environment is: Environmental Working Group. Another source is Toxin Free legacy.There are numerous studies showing the relationship between chemicals in our environment and developmental delays, thyroid disruption, etc. One of the best sources for information on the affects of chemicals in our environment is: Environmental Working Group. Another source is Toxin Free legacy.

23. Which Genes? Many genetic studies of autism, but they generally disagree: too few subjects and too many genes Probably 10-20 genes involved in complex manner Translational Genomics (TGen) plans largest study ever (1000 subjects) In two similar conditions, Fragile X and Rett�s Syndrome, a single gene has been identified for each

24. Which Environmental Causes? No general agreement Possible causes with limited scientific data include: High levels of heavy metals (e.g., mercury, lead, aluminum) due to limited excretion because of low glutathione Excessive oral antibiotic usage (gut damage = poor health and neurodevelopment due to poor digestion of nutrients) Vaccine damage (especially MMR) Exposure to pesticides Lack of essential minerals (iodine, lithium) Other unknown factors

25. Rapid increase in incidence 1970�s: 2-3 per 10,000 2007: 1 per 150 (U.S.); 1 per 58 (U.K.) In the U.S., affects 1 in 80 boys, since 4:1 boy:girl ratio In California (which has best statistics), autism now accounts for 45% of all new developmental disabilities YOUR STATE (get the stats from DDD if you can): 1996: 1999: 2003: 2005:

26. Why rising rate of autism?

27. Prognosis? Two major lifetime studies: Autism: 90% of adults unable to work, unable to live independently, < 1 social interaction/month Asperger (50% with college degrees): Similar prognosis � social skills, limited use of intellectual abilities Grim prognosis if untreated, but many treatments now available, and there is MUCH more hope

28. Autism is TREATABLE! Many children now greatly improve, and some even recover, due to evidence-based behavioral and/or biomedical interventions, primarily: Behavioral Therapies Biomedical Therapies Many families have contacted ARI over the past 40 years describing successful initial interventions at home using a variety of strategies, including: Eliminating toxins in their child's environment Trying restricted diets like gluten/casein/soy free, SCD, etc. Using over-the-counter nutritional supplementsMany families have contacted ARI over the past 40 years describing successful initial interventions at home using a variety of strategies, including: Eliminating toxins in their child's environment Trying restricted diets like gluten/casein/soy free, SCD, etc. Using over-the-counter nutritional supplements

29. Behavioral therapies ABA � most widely accepted/implemented � evidence based � well documented results Pivotal Response Training Carbone method Floortime RDI First you need to fix the hardware � by treating medical issues, then reinstall the software with a behavioral approach.First you need to fix the hardware � by treating medical issues, then reinstall the software with a behavioral approach.

30. Applied Behavior Analysis (ABA) Pioneered by Dr. Ivar Lovaas at UCLA in the 1960s. Research study (1987) evaluated 19 young autistic children ranging from 35 to 41 months of age. Children received over two years of intensive, 40-hour/week behavioral intervention by trained graduate and undergraduate students. Nearly half of the children improved so much they were indistinguishable from typical children, and they went on to lead fairly normal lives. Of the other half, most had significant improvements, but a few did not improve much. ABA stands for Applied Behavioral Analysis. It is considered an �educational' treatment for Autism. Scientific testing has shown ABA to be a valid and helpful intervention for Autistic Children and has shown a percentage of children that have recovered with ABA alone. Most of this testing was done before valid biomedical interventions came about. The combination of healing a child from the inside while using ABA to make up for deficits, gaps in learning, or catching up a child to their peers and may increase the percentage of recovered children. The value of a good consultant is that ABA can be a very complex program and having the expertise of a good consultant who has a deep well of knowledge to pull from is priceless. Thanks to advances in all treatments, today it is recommended to use a combination of approaches (e.g. biomedical and ABA, RDI, etc.) ABA alone cannot heal your child's medical conditions and Biomedical cannot make up for deficits with your child's peers. Many parents feel an all around approach covers all bases. To find the most qualified provider, be sure they are a "Board Certified Behavior Analyst" and contact the nearest FEAT(Families for Effective Autism Treatment) organization for provider information.ABA stands for Applied Behavioral Analysis. It is considered an �educational' treatment for Autism. Scientific testing has shown ABA to be a valid and helpful intervention for Autistic Children and has shown a percentage of children that have recovered with ABA alone. Most of this testing was done before valid biomedical interventions came about. The combination of healing a child from the inside while using ABA to make up for deficits, gaps in learning, or catching up a child to their peers and may increase the percentage of recovered children. The value of a good consultant is that ABA can be a very complex program and having the expertise of a good consultant who has a deep well of knowledge to pull from is priceless. Thanks to advances in all treatments, today it is recommended to use a combination of approaches (e.g. biomedical and ABA, RDI, etc.) ABA alone cannot heal your child's medical conditions and Biomedical cannot make up for deficits with your child's peers. Many parents feel an all around approach covers all bases. To find the most qualified provider, be sure they are a "Board Certified Behavior Analyst" and contact the nearest FEAT(Families for Effective Autism Treatment) organization for provider information.

31. Several variations today, but general agreement that: Usually beneficial, sometimes very beneficial Most beneficial with young children, but older children can benefit 20-40 hours/week is ideal Prompting, as necessary, to achieve high level of success, with gradual fading of prompts Therapists need proper training and supervision Regular team meetings needed to maintain consistency Most importantly: keep the sessions interesting to maintain child�s attention and motivation In YOUR STATE, (insert ABA policy) Example: In Arizona every child diagnosed with AUTISM (not PDD-NOS) can receive ABA services from DDD (Arizona Division of Developmental Disabilities) ABA Today

32. Other Evidence-Based Therapies Speech Therapy Occupational Therapy/Physical Therapy Physical Therapy Sensory Integration Auditory Integration Therapy (AIT) Vision Therapy Prism lenses Irlen lenses

33. Improve Diet Food Allergies GFCF Diet (no gluten, no casein/dairy) Vitamin/Mineral Supplements High-Dose Vitamin B6 and Magnesium Essential Fatty Acids Amino Acids Gut Treatments Thyroid Supplements Sulfation Glutathione Detoxification Anti-Viral Treatments Immune System Regulation Rationale for the Biomedical ApproachEndorsed by ARI/DAN!

34. Consume 3-4 servings of nutritious vegetables and 1-2 servings of fruit each day. Consume at least 1-2 servings/day of protein Greatly reduce or avoid added sugar (soda, candy, etc.) Avoid �junk food� � cookies, fried chips, etc. (even if GF/CF, etc) Greatly reduce or avoid fried foods or foods containing transfats Avoid artificial colors, artificial flavors, and preservatives Go organic Improving the Diet So � the big question Does my child have to stay on a very strict diet FOREVER? Maybe. Some children are able to "come off" the diet after a length of time. Many are not. Your child's reaction will not be predictable. Parents have described reintroducing foods slowly, one at a time, to determine whether or not their child was ready to expand the diet. You can consult with a� clinician for more advice about making dietary changes.Talk About Curing Autism (TACA) describes issues with enforcing the diet at school. A template for writing a letter to your school district appears on pages 92-93 of Special Diets for Special Kids by Lisa Lewis, PhD.�The book also provides lists of foods most autistic children on restricted diets can and cannot have.�Providing a brand-specific food list for your teacher can be a big help. So � the big question Does my child have to stay on a very strict diet FOREVER? Maybe. Some children are able to "come off" the diet after a length of time. Many are not. Your child's reaction will not be predictable. Parents have described reintroducing foods slowly, one at a time, to determine whether or not their child was ready to expand the diet. You can consult with a� clinician for more advice about making dietary changes.Talk About Curing Autism (TACA) describes issues with enforcing the diet at school. A template for writing a letter to your school district appears on pages 92-93 of Special Diets for Special Kids by Lisa Lewis, PhD.�The book also provides lists of foods most autistic children on restricted diets can and cannot have.�Providing a brand-specific food list for your teacher can be a big help.

35. Detecting Food Allergies Look for: Red cheeks Red ears Dark circles under eyes Changes in behavior Keep a diet log: Look for patterns between symptoms and foods eaten in the last 1-3 days Order IgE and IgG blood tests: IgE related to an immediate immune response IgG relates to a delayed immune response.

36. Rationale: T. Buie at Harvard Medical School found that many children with autism have defective and/or few digestive enzymes or few enzymes � means food doesn�t break down. This is different from a food allergy. Large proteins like gluten and casein cause problems in the bloodstream. Recommendations: Requires 100% avoidance of all gluten products and all dairy products (and often soy, corn and rice as well) Give digestive enzymes with food Caution: need calcium supplement unless on excellent diet Allergies or not: Gluten-/Casein-free Diet There is convincing empirical evidence that special diets help autistic individuals.There is convincing empirical evidence that special diets help autistic individuals.

37. Using Vitamin and Mineral Supplements Rationale: A double-blind, placebo-controlled study (published by Adams et al.) found that a strong, balanced multi-vitamin/mineral supplement resulted in improvements in children with autism in sleep and gut function, and possibly in other areas. Recommendation: Use an allergen-free multi-vitamin. There are many formulas specifically for ASD.

38. Methylcobalamin Rationale:Methyl-B12 is closely allied with the folic acid biochemical pathway and is necessary for detoxification. Unfortunately, many autistic children have a defect in this enzyme. Recommendations:MB-12 is only by prescription. For approximately 85% of children 64.5 mcg/kg/every 3 days works well. Side Effects: The most common side effects are hyperactivity with or without increased stimming, changes in sleep patterns, and increased mouthing of objects. I classify side effects as nuisance (tolerable) vs. intolerable. For side effects that are intolerable and so disruptive that a child can no longer function or learn, I stop the shots. Should an older or larger child become uncontrollable and potentially dangerous to others, this is always considered an intolerable side effect and the shots must be stopped. Reintroduction of the shots, if possible at all, is part of my advanced protocols and beyond the scope of this discussion.Side Effects: The most common side effects are hyperactivity with or without increased stimming, changes in sleep patterns, and increased mouthing of objects. I classify side effects as nuisance (tolerable) vs. intolerable. For side effects that are intolerable and so disruptive that a child can no longer function or learn, I stop the shots. Should an older or larger child become uncontrollable and potentially dangerous to others, this is always considered an intolerable side effect and the shots must be stopped. Reintroduction of the shots, if possible at all, is part of my advanced protocols and beyond the scope of this discussion.

39. Giving High Dose Vitamin B6 + Mg Rationale: Over 20 studies on efficacy of B6 with Magnesium: 45-50% of children and adults with autism benefited from high-dose supplementation of B6 with magnesium. Vitamin B6 is required for production of serotonin, dopamine, and others and glutathione. Magnesium helps curtail hyperactivity caused by B6 alone. Recommendations: 8 mg/pound of vitamin B6 (maximum of 1000 mg) 4 mg/pound magnesium

40. Using Essential Fatty Acids � Fish Oil, etc. Rationale: Most people in the US do not consume enough omega 3�s. Two studies found that children with autism have lower levels of omega 3 fatty acids than do typical children. Recommendations: Omega 3: 20-60 mg omega 3/kg-bodyweight, from fish oil Omega 6: � as much omega 6 as omega 3; Evening primrose oil or borage oil

41. Supplementing Amino Acids Rationale: � Some children with autism have digestive problems and self-limited diets that are low in protein. This can lead to amino acid deficiency, depriving the brain of neurotransmitters, hormones, enzymes, antibodies, immunoglobulins, glutathione, etc. Recommendations: Test: Fasting plasma amino acids, or 24 hr urine (NOTE: unusually high levels in urine may indicate wasting) Increase protein intake Use digestive enzymes Give a customized amino acid

42. Using Digestive Enzymes Rationale: T. Buie at Harvard Medical School found that many children with autism have defective and/or few digestive enzymes or few enzymes � means food doesn�t break down. Recommendations: A Comprehensive Digestive Stool Analysis can reveal if some types of foods are not being digested well, suggesting a problem with specific digestive enzymes. Use allergen-free digestive enzymes to aid in breaking down food and facilitation better nutrient absorption Enzymes come in capsule form (but can be sprinkled on food) Give with every meal. Most clinicians agree that digestive enzymes are most effectively used in conjunction with diets. Enzymes are taken just before food is eaten and help break down the proteins prior to entering the digestive tract. ARI does not advocate using enzymes as a replacement for dietary intervention. �Most clinicians agree that digestive enzymes are most effectively used in conjunction with diets. Enzymes are taken just before food is eaten and help break down the proteins prior to entering the digestive tract. ARI does not advocate using enzymes as a replacement for dietary intervention. �

43. Yeast in the Gut Rationale: Many anecdotal reports of yeast overgrowth in children with autism, and limited research evidence. Suspect some yeast toxins (alcohol) can have major effect on behavior/aggression. Recommendations: Probiotics: 30-500 billion CFU�s Antifungals: Nystatin, Diflucan Low-sugar diet Stool analysis for gut bacteria/yeast

44. Thyroid Disorders Rationale: Perhaps 10% of general population has low thyroid levels, and at least that many children with autism also may have that problem. One study found that children with autism have unusually low iodine levels Low iodine is the major cause of mental retardation worldwide (over 80 million cases) - becoming more common in US (decreased use of iodinized salt). Recommendations: Testing: Measure body temperature before waking; Measure iodine levels Thyroid test (caution re. reference ranges being too broad in some cases) Treatment: Iodine supplementation if low Thyroid supplements, preferably natural animal extracts; caution re. overdosing;

45. Treating Thyroid Problems Testing: Measure body temperature before waking; Measure iodine levels Thyroid test (caution re. reference ranges being too broad in some cases) Recommendations: Iodine supplementation if low Thyroid supplements, preferably natural animal extracts; caution re. overdosing;

46. Rationale: Many children with autism have excess loss of sulfate in their urine, resulting in a low level of sulfate in their body. Recommendations: Testing: Urine testing of free and total sulfate is useful to check for excessive loss of sulfate. Blood testing can be used to check for levels of free and total plasma sulfate. � Treatments: Oral MSM (500-2000 mg depending on size and sulfate level) Epsom Salt (magnesium sulfate) baths � 2 cups of Epsom salts in warm/hot water, soak for 20 minutes, 2-3x/week. � � Treating Sulfation Problems

47. Glutathione Deficiency Rationale: Studies show low glutathione (critical antioxidant) in children with autism due to abnormalities in their methionine pathway. Recommendations: Testing: Measure level of glutathione (fasting plasma or RBC). Treatment: Oral glutathione is poorly absorbed (perhaps 15%). Alternatives include IV glutathione, N-acetyl cysteine, 500 mg vitamin C, DMSA therapy.

48. Heavy Metal Toxicity Rationale: Low/inactive glutathione results in less excretion of mercury and toxic metals/chemicals, resulting in a higher body burden. Also, many children with autism had increased use of oral antibiotics in infancy, which alter gut flora and thereby almost completely stop the body�s ability to excrete mercury.

49. Recommendations for Detoxification Testing: Urinary porphyrins reveal presence of mercury and other toxic metals by evaluating steps in porphyrin pathway. Nataf et al, Porphyrinuria in childhood autistic disorder: implications for environmental toxicity. Toxicol Appl Pharmacol. 2006 Jul 15;214(2):99-108.  Treatment: DMSA (FDA-approved for lead poisoning in infants) or DMPS. See DAN! consensus report at www.autismresearchinstitute.com

50. Immune System Regulation Rationale: Several studies found altered immune system in autism, generally with shift to Th-2, and some evidence for auto-immunity Recommendations: Treatments include: IVIG: Gupta et al., found IVIG benefited 4 of 10 children, with 1 case of marked improvement. ACTOS: Open study of ACTOS in children with autism found substantial improvements. Antiviral therapies (Valtrex, acyclovir)

51. Take Home MessageAutism Is Treatable There are many individual differences among autistic individuals: A treatment that is effective for one autistic child may have little or no benefit for another autistic child.