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Truth or Myth in ASD's

Introduction about ASD for parents as part of the Expert series of McMaster Children's Hospital Autism Program

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Truth or Myth in ASD's

  1. 1. Trying to understand the Brain Olaf Kraus de Camargo Twitter: @DevPeds Truth or Myth in ASD’s Fall 2020
  2. 2. Understanding the Brain “People with ASD have a harder time processing and understanding events on an everyday scale: often we have no filter in what we see or say, get easily overwhelmed, and can display idiosyncratic behaviours that mean our talents can be overlooked and ignored.” (Camilla Pang)
  3. 3. ASD • Autism • Spectrum • Disorder 3
  4. 4. What means spectrum? • A spectrum (plural spectra or spectrums[1]) is a condition that is not limited to a specific set of values but can vary infinitely within a continuum. (http://en.wikipedia.org/wiki/Spectrum) 4
  5. 5. What means spectrum? 5 An individual mix of diverse abilities memory language Fine motor Spatial thinking
  6. 6. Leo Kanner (1943) EARLY INFANTILE AUTISM • 11 cases • Essential Features • Autism • Resistance to change • Congenital in nature • Developmental Issues 6
  7. 7. Hans Asperger (1944): “AUTISTIC PSYCHOPATHY” • Series of cases - all male • Marked social problems • Good cognitive/language skills • Motor problems • Circumscribed interests • Family history (esp. fathers) • “Autistic Psychopathy” (Autistic personality disorder) 7
  8. 8. Axel 8
  9. 9. 9 9
  10. 10. How does our brain work? BRAIN 1 0
  11. 11. Our senses are the connection to the world BRAIN INTERACTION WORLD 1 1
  12. 12. Our brain creates our world BRAIN 1 2 WORLD
  13. 13. How our “vision-brain” creates the physical world: http://youtu.be/gJhyu6nlGt8 1 3
  14. 14. How our “listening-brain” creates auditory information: 1 4
  15. 15. How our “social-brain” makes sense of the social world: http://youtu.be/sF0SVBBfwNg 1 5 Fritz Heider and Marianne Simmel , 1944
  16. 16. Now, tell me the story about what you just saw! What happened? 1 6 Castelli F, Frith C, Happé F, Frith U. Autism, Asperger syndrome and brain mechanisms for the attribution of mental states to animated shapes. Brain. 2002;125(8):1839-1849. doi:10.1093/brain/awf189 Heider F, Simmel M. An Experimental Study of Apparent Behavior. Am J Psychol. 1944;57(2):243-259. https://www.jstor.org/stable/1416950.
  17. 17. How our brain observes and pays attention: 1 7
  18. 18. How our brain observes and pays attention: 1 8
  19. 19. Our senses also inform us about our body and our brain helps us understand what is going on inside us BRAIN INTERACTION 1 9 Body
  20. 20. How would you act if you have trouble to understand what is going on around you or within your body? • Explore • Experiment • Repeat 2 0
  21. 21. • avoid unpleasant situation/sensation • change focus on something less threatening • sticking to what is known/safe • panic How would you act if you have trouble to understand what is going on around you or within your body? 2 1
  22. 22. Context
  23. 23. Difficulties in children with ASD • to understand the world around them • to understand their body • to “read the mind” of other people difficulties to communicate restriction to oneself (“auto” = self) 2 3
  24. 24. Can my child understand me and feel my love? http://youtu.be/pE1A6swmksY 2 4
  25. 25. Research & Treatments 2 5
  26. 26. Causes for ASD Bourgeron, T., 2015. The genetics and neurobiology of ESSENCE: The third Birgit Olsson lecture. Nord. J. Psychiatry 9488, 1–9. doi:10.3109/08039488.2015.1042519 Genetic: 600 -700 candidate genetic alterations “The recent advances in genomics have demonstrated that an identical genetic variant may increase the risk for a wide range of diagnoses formerly thought of as distinct”
  27. 27. 2 7 Causes for ASD
  28. 28. First: some definitions about research • Statistically Significant: usually means that the chance that an observed effect is related to an intervention is at least 95% - it does not tell if this effect is big or small! • Clinically Significant: describes how meaningful is the effect • Evidence: refers to the type of studies done to describe a certain effect. • Randomized: means it is a lottery to determine which child gets which treatment during the study • Double-blind: neither patient/caregiver nor experimenter knows who is being treated 2 8 less more Trustworthyness
  29. 29. Systematic Review • Bias? How well was the study designed to avoid that study results were influenced by preconceptions or judgments of the researcher of the study. • Strength of Evidence: Different types of analyses generate a different strength of evidence
  30. 30. Strength of Evidence – “Evidence-based” can have different meanings Is determined by a series of aspects of a study such as: recruitment of participants, effect size, possible confounders, publication bias etc. Grades of Strength of Evidence: •HIGH: High confidence that the evidence reflects the true effect. Further research is very unlikely to change our confidence in the estimate of effect. •MODERATE: Moderate confidence that the evidence reflects the true effect. Further research may change our confidence in the estimate of effect and may change the estimate. •LOW: Low confidence that the evidence reflects the true effect. Further research is likely to change the confidence in the estimate of effect and is likely to change the estimate. •INSUFFICIENT: Evidence is either unavailable or does not permit a conclusion.
  31. 31. Science in the Media 3 1
  32. 32. Effectiveness Research: Correlation is not Causation! 3 2
  33. 33. Bias: The Power of Expectations can Influence Research Results https://youtu.be/hbhwlRRW_3o
  34. 34. Supplements “To date there is no high quality evidence that omega-3 fatty acids supplementation is effective for improving core and associated symptoms of ASD.” Two double-blind randomized trials - 37 patients 2011 3 4
  35. 35. Supplements “ In conclusion, these findings reported a small but not significant benefit of ! -3 PUFA supplementation in children with ASD.” Three double-blind randomized trials - 93 patients 2017 3 5
  36. 36. Gluten-free, Casein-free Diet “Evidence to date on the effectiveness of gfcf-d for children with ASD has been inconclusive due to methodologic limitations. Preliminary data suggest there may be a subgroup of children with ASD who respond to a gfcf-d.” Many low quality studies, only two double-blind randomized trials 3 6
  37. 37. Gluten-free, Casein-free Diet “Potential benefits to the affected child include improved communication, social interaction, and behavioral flexibility and decreased inattention and hyperactivity. Potential harms of the diet include nutritional deficiencies and the effort and costs associated with maintaining it.” 3 7
  38. 38. “Even if new data have become available, the overall conclusions made previously did not change. The limited available evidence suggests that there is no consistent evidence to support the use of a GFCF diet in children with ASD.”
  39. 39. • Ω-3 supplementation did not affect challenging behaviors and was associated with minimal harms (low Strength of Evidence). • Two RCTs of different digestive enzymes reported mixed effects on symptom severity (insufficient Strength of Evidence). • Studies of other supplements (methyl B12, levocarnitine) reported some improvements in symptom severity (insufficient Strength of Evidence). • Studies evaluating gluten/casein-free diets reported some parent-rated improvements in communication and challenging behaviors; however, data were inadequate to make conclusions about the body of evidence (insufficient Strength of Evidence). • Studies of gluten- or casein-containing challenge foods reported no effects on behavior or gastrointestinal symptoms with challenge foods (insufficient Strength of Evidence); • 1 RCT reported no effects of camel ’s milk on ASD severity (insufficient Strength of Evidence). 19 randomized controlled trials, 4 with low risk of bias - 732 patients 2017 3 9
  40. 40. Social Groups “There is some evidence that social skills groups can improve social competence for some children and adolescents with ASD.”Five randomized controlled studies, only children and adolescents with IQ > 70 4 0
  41. 41. Social Groups • ”To whom do the results apply?” • “To what kind of settings do the results apply?” • “Who can provide the treatment and how should the treatment be delivered?” • “Are the gains generalized to the child’s everyday environment and maintained over time?” 4 1 ”Our review suggests that the generalizability of the evaluation research within this field is unclear.”
  42. 42. Pharmacotherapy – Specific Agents ●Stimulant medications commonly given (75%) ● Probably used due to learning difficulties and what appear to be attentional problems - some paradoxical responses, tics ● SSRI’s (given in 1/3 of our case series) ● Mixed response, often some benefit but usually the ‘core’ eccentricity and unusual interests remain ● Occasional activation ● Antidepressants can be effectively used ● Neuroleptics increasingly likely to be used 4 2
  43. 43. Risperidone “There is some limited evidence of efficacy of risperidone reducing aggression and conduct problems in children aged 5 to 18 with disruptive behaviour disorders in the short term. For aggression, the difference in scores of 6.49 points on the ABC Irritability subscale (range 0 to 45) may be clinically significant. For conduct problems, the difference in scores of 8.61 points on the NCBRF-CP (range 0 to 48) is likely to be clinically significant.” Eight randomized controlled trials, over 200 patients 4 3
  44. 44. Risperidone “Compared with placebo, risperidone and aripiprazole showed the most evidence of efficacy in treating irritability in youth with ASD. Both compounds showed large effect sizes for treating IA (d = 0.9 and 0.8, respectively)” Eleven randomized controlled trials, 811 patients 4 4
  45. 45. Melatonin “Melatonin administration in ASD is associated with improved sleep parameters, better daytime behavior, and minimal side effects.” Five randomized double-blind studies 4 5
  46. 46. IBI “We found that children receiving the EIBI treatment performed better than children in the comparison groups after about two years of treatment on tests of adaptive behavior (behaviors that increase independence and the ability to adapt to one’s environment), intelligence, social skills, communication and language, autism symptoms, and quality of life. The evidence supports the use of EIBI for some children with ASD. However, the quality of this evidence is low as only a small number of children were involved in the studies and only one study randomly assigned children to groups.”One randomized trial, four non- randomized trials, 203 children 4 6
  47. 47. IBI “They found weak evidence that children receiving the EIBI treatment performed better than children in the comparison groups after about two years of treatment on scales of adaptive behavior, intelligence tests, expressive language (spoken language), and receptive language (the ability to understand what is said).Differences were not found for the severity of autism symptoms or a child’s problem behavior. No study reported adverse events (deterioration in adaptive behaviour or autism symptom severity) due to treatment.” Follow-up in 2018: One randomized trial, four non-randomized trials, 219 children 4 7
  48. 48. Why is the Evidence for IBI weak? ”The present review shows that dosage and adherence are currently well described, but that few studies provide sufficient information to replicate the intervention in practice and systematically assess adherence to the proposed intervention protocol. Finally, the evidence-based practices movement is now very present in the field of ASD intervention. EIBI is recognized for its effectiveness with children, but it may also comprise a variety of intervention procedures that are somewhat ill-defined for the purpose of putting them into practice (Cook & Odom, 2013; Dillenburger et al., 2014). A better definition of EIBI programs, as well as improved evaluations of their implementation in practice, seems necessary to ensure that children with ASD and their families derive benefits from the interventions.” 2017 - Canadian Systematic Review of 28 studies 4 8
  49. 49. New Evidence
  50. 50. How to Assess Internet Health Information? 5 0 https://medlineplus.gov/webeval/webeval.html
  51. 51. MYTH: Autistic People have no emotion. FACT: Autistic individuals experience all emotions; however, they may experience them with different intensities and exhibit them in different forms. Myths X Facts 5 1
  52. 52. MYTH: All autistic individuals are similar to the portrayal given in "Rain Man". FACT: Rain Man is simply an example of an autistic individual. Although some autistic people stand out, many do not. Myths X Facts 5 2
  53. 53. MYTH: Autism is a rare developmental disorder. FACT: Autism is the third most common developmental disorder - more common than Down Syndrome. Myths X Facts 5 3
  54. 54. MYTH: In general, people with autism do not like affection. FACT: There are many autistic individuals who actually crave affection. Myths X Facts 5 4
  55. 55. MYTH: Autism is found only in North America. FACT: Autism is found throughout the world in families of all racial, ethnic and socio-economic backgrounds. Myths X Facts 5 5
  56. 56. MYTH: Autistic individuals have a very limited sense of humour. FACT: Autistic people often have a wonderful sense of humour. Myths X Facts 5 6
  57. 57. MYTH: People can grow out of Autism. FACT: People do not "grow out" of Autism Spectrum Disorders. With early intervention and good educational programs progress may be significantly better. Myths X Facts 5 7
  58. 58. MYTH: There is a physical test for autism. FACT: The Autism Diagnosis is made by an experienced medical or psychological practitioner based on observations of certain characteristics of autistic people. Myths X Facts 5 8
  59. 59. MYTH: Everyone with Autism Spectrum Disorders behaves in the same way. FACT: People with Autism Spectrum Disorders are individuals with unique strengths and needs. Myths X Facts 5 9
  60. 60. MYTH: Autism is the result of poor parenting. FACT: NO! Fifty years ago the common belief was that cold-hearted parenting caused ASD. The phrase "refrigerator parent" was often used. ASD research has come a long way and we know that it is not caused by something the parents do or did not do. PLEASE be assured that your child’s ASD in NOT YOUR FAULT!!! Myths X Facts 6 0
  61. 61. MYTH: Autistic People have no emotion. FACT: Autistic individuals experience all emotions; however, they may experience them with different intensities and exhibit them in different forms. MYTH: All autistic individuals are similar to the portrayal given in "Rain Man". FACT: Rain Man is simply an example of an autistic individual. Although some autistic people stand out, many do not. MYTH: Autism is a rare developmental disorder. FACT: Autism is the third most common developmental disorder - more common than Down Syndrome. MYTH: In general, people with autism do not like affection. FACT: There are many autistic individuals who actually crave affection. MYTH: Autism is found only in North America. FACT: Autism is found throughout the world in families of all racial, ethnic and socio-economic backgrounds. MYTH: Autistic individuals have a very limited sense of humour. FACT: Autistic people often have a wonderful sense of humour. MYTH: People can grow out of Autism. FACT: People do not "grow out" of Autism Spectrum Disorders. With early intervention and good educational programs progress may be significantly better. MYTH:There is a physical test for autism. FACT: The Autism Diagnosis is made by an experienced medial or psychological practitioner based on observations of certain characteristics autistic people. MYTH: Everyone with Autism Spectrum Disorders behaves in the same way. FACT: People with Autism Spectrum Disorders are individuals with unique strengths and needs. MYTH: Autism is the result of poor parenting. FACT: NO! Fifty years ago the common belief was that cold-hearted parenting caused ASD. The phrase "refrigerator parent" was often used. ASD research has come a long way and we know that it is not caused by something the parents do or did not do. PLEASE be assured that your child’s ASD in NOT YOUR FAULT!!! Myths X Facts 6 1
  62. 62. How are others seeing my child? http://youtu.be/p9-l19CKISg 6 2
  63. 63. Resources ●MacART – McMaster Autism Research Team: http://www.macautism.ca ●Autism Ontario: http://www.autismontario.com/ ●McMaster Children’s Hospital Autism Program: https://www.hamiltonhealthsciences.ca/mcmaster-childrens- hospital/areas-of-care/developmental-pediatrics-and- rehabilitation/autism-program/ ●3D-Video “The Party”: https://youtu.be/OtwOz1GVkDg ●Twitter: @Mac_Autism 6 3
  64. 64. Thank you! 6 4

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