Autism - a quick overview for parents and care-givers

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A parent's "cliff notes" guide to Autism Spectrum especially in children.
It discusses definitions, causes, therapies and their efficacy

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  • Sources
  • “Changes in Prevalence ofParent-reported Autism Spectrum Disorder in School-aged U.S. Children: 2007 to 2011–2012”http://www.cdc.gov/nchs/data/nhsr/nhsr065.pdf
  • ABA: http://www.autismspeaks.org/what-autism/treatment/applied-behavior-analysis-aba
  • Autism - a quick overview for parents and care-givers

    1. 1. Autism in a Nutshell A guide for the average parent / layperson By Frank Kelly kellyfj@gmail.com @kellyfj1
    2. 2. Intended Audience • A quick guide aimed at Parents and lay people who • don‘t have time to read lots of Books • money to hire lots of experts or • expertise to read Neuroscience papers
    3. 3. Who am I? • I am not an expert . . . • . . . .but I have some ―experience‖ • I grew up with Autism in my family • I have a son on the ―Autism Spectrum‖ • I have a Ph.D. in Computational Neuroscience from 10 years ago • so consider me to have an ―informed amateur‘s opinion‖ • This is NOT professional / expert or medical advice. Always consult a Medical Professional: Psychologist / Neuropsychologist
    4. 4. If you had to read one slide • There is no medication for Autism – Early and Intensive Behavioral Intervention is key • Early = Before 5 years old (if not earlier) • Intense = 20+ Hours per week • Behavioral Intervention include ABA, RDI, ESDM etc. • Autism has many potential causes – genetic & environmental • If you are in ANY doubt or have ANY questions get professional analysis from a reputable Neuropsychologist • Teach your kids about the danger of traffic and teach your kid to swim (no really!)
    5. 5. Definitions
    6. 6. What is Autism? • ―Autism is a disorder of neural development characterized by • impaired social interaction • Impaired verbal and non-verbal communication, and by • restricted, repetitive or stereotyped behavior.‖ [1] • And more . . . . • Boys affected more frequently than girls 4 : 1 • Autism is a label that covers a LARGE range of behavioral and learning challenges . . . . • That‘s why you hear the term . . . .
    7. 7. ―Autism Spectrum‖ • The autism spectrum or autistic spectrum describes a range of conditions classified as pervasive developmental disorders . . . include • Autism • Asperger syndrome • pervasive developmental disorder not otherwise specified (PDD-NOS), • childhood disintegrative disorder • Rett syndrome
    8. 8. Examples • There is a HUGE range within the Spectrum • Some kids have obvious challenges • ―Low Functioning Autism‖ • Some kids challenges are less obvious • ―High Functioning Autism‖
    9. 9. Autism also comes with . . . • Sensory Sensitivities (Visual, Auditory, Tactile, Proprioceptive, Taste etc.) • ADHD • Bipolar disorder • Stomach / Bowel (GI) problems • Motor Control issues • Anxiety & Depression • Epilepsy • Sleep problems
    10. 10. Asperger‘s Syndrome • Autistic kids but • without significant language delays • Have average to above-average cognitive skills • Why was it rolled under ASD in DSM-V? • ―aim was not to expand the number of people diagnosed with mental illness but to ensure those affected were more accurately diagnosed so they could get the most appropriate treatment‖ • http://www.guardian.co.uk/society/2012/dec/02/asper gers-syndrome-dropped-psychiatric-dsm
    11. 11. Occurrence
    12. 12. History Some people with potential High Functioning Autism / Asperger‘s. Not a formal diagnosis . . . . Just speculation based on historical accounts [3] • Isaac Newton • Nikola Tesla • Albert Einstein • James Joyce • Lewis Carroll NOTE: Most kids with HFA will NOT become famous theoretical physicists / authors. Compare to employment rate later . . . .
    13. 13. But wait there‘s more • 2010: 1 in 88 • 2013: 1 in 50
    14. 14. Causes
    15. 15. Overview • ―53% percent of the increase in autism prevalence over time may be explained by changes in diagnosis (26%), greater awareness (16%), and an increase in parental age (11%).‖ [4] • ―Environmental factors, and their interactions with genetic susceptibilities, are likely contributors to increase in prevalence and are the subject of numerous research projects‖ [4]
    16. 16. Hereditary Factors • There is lots of evidence from studies of Twins (identical and fraternal), Siblings and Parents suggest a strong genetic linkage • ―Experts estimate that 400 to 1,000 individual genes may play a role in the complex neurological issues involved in autism.‖ [5] • ―The largest-ever study of twins with ASD—192 pairs—reported last year that when one identical twin has autism, there is only a 70% chance that the other twin will, despite their identical genetic makeup.‖ (if it was just genetics it should be 100% chance) • ―Among fraternal twins, the likelihood that a second twin will have autism is 35%—nearly twice the risk other [non twin] siblings face, the study found. ‗That suggests there was something about their shared prenatal environment that really increases the risk,‘‖[5] • It‘s not JUST genetics . . . . Prenatal environment then?
    17. 17. Environmental Impact • Not just on child but on PARENT! • Nothing definitive – lots of potentials (some controversial) [6 – 14] • Parental age (mother & father) • Parental exposure to exhaust / combustion products and disinfectants (esp. mother) • Urban living (before and after birth) • Pitocin during Childbirth • BPA • And yes even Thimerosal (Vaccines)
    18. 18. Improved Diagnostics • Less of a factor for Low Functioning Autism • No simple ―blood test‖ for autism – diagnosis is based on observed behavior • Some of these kids were labelled as • ―Problem Children‖ • ―Troubled‖ • ―Discipline Problem‖ • ―Lazy‖ • ―Overly Sensitive‖ • ―Retarded‖ • A recent example
    19. 19. So many causes . . . • The problem is that Autism is a label that covers a LARGE range of abilities • Although the symptoms are the same (but varying in severity) the underlying causes are probably different – some solely inherited, some solely environmental, some a mix • So there will likely be targeted drug and other therapies . . . .
    20. 20. Treatment
    21. 21. Brain Development
    22. 22. Brain Development • Take-away – the brain does 90% of its development before Kindergarten (need reference) • Your brain is still learning and can still adapt . . . • Even adolescents and teens can benefit more than adults • The best chances for intervention are early – the earlier the better
    23. 23. Autism in adulthood • ―More than 50% of youth who had left high school in the past 2 years had no participation in employment or education.‖ [15] • ―[By 9 years of age] Nearly a quarter of the children with autism in this study met lifetime diagnostic criteria for . . . major depression.‖ • ―Reported rates of at least one anxiety disorders in individuals with autism have varied from 17% to 84%‖ • LESSON: The impact of missed intervention is high
    24. 24. Behavioral Therapies • ABA = Applied Behavioral Analysis • Collect data on behavioral responses • Determine if progress is being made • If not reevaluate & try something new • Focus is on positive reinforcement - No response to negative behavior • RDI = Relationship Development Intervention • Breaks down experiences into smaller chunks • Teaches ―intuitive‖ things explicitly • Lets the kids practice forming and maintaining relationships in different contexts.
    25. 25. Behavioral Therapies (cont.) • DIR/Floortime • ―therapists and parents engage children through the activities each child enjoys. They enter the child's games . . . Therapists teach parents how to direct their children into increasingly complex interactions.‖ [18] • ESDM = Early Start Denver Model [19] • My description ―A cross between ABA and RDI/Floortime‖ • Others . . . .
    26. 26. Do these therapies work?
    27. 27. Therapy Results • ABA • ―behavioral interventions are effective for improving language, cognitive abilities, adaptive behavior, and social skills, and reducing anxiety and aggression‖[21] • In a study of 42 Children: • 21 children who received ABA treatment • 6 were ‖fully included in regular education without assistance at year 3” [2] • 11 others were included with support • For the 21 children who did not receive ABA only 1 of them was able to make the transition to regular education [22]
    28. 28. Therapy Results (cont.) • RDI • The only published results I could find were from RDI practitioners (potential conflict of interest) • However my own personal experiences for RDI are wonderful • I am currently using a mix of ABA and RDI for my son
    29. 29. Therapy Results (cont) • ESDM • ―The ESDM group exhibited greater improvements in autism symptoms, IQ, language, and adaptive and social behaviors than the community intervention group.‖[23] • ―Compared with children who received community intervention, children who received ESDM showed significant improvements in IQ, adaptive behavior, and autism diagnosis‖[24]
    30. 30. Optimal Outcomes for HFA kids ― . . . .‘optimal outcome‘ requires losing all symptoms of ASD in addition to the diagnosis‖ [25] HOW!?!?! ―The children in the current study were predominantly from the northeast US, and therefore tended to get behavioral interventions . . . . ‖[25] ―It was the clinical impression of our team that the [Optimal Outcome] parents were generally highly involved in the children’s treatment programs and in their social lives.‖ [25] ―Parents who advocate vigorously for the best interventions and who carry over treatments into other hours of the day do not guarantee the kind of [Optimal Outcome] we describe here, but may maximize the chance of one.‖
    31. 31. Key Lesson • Early and Intense Behavioral Treatment is CRITICAL • Some behavioral therapies may work for you, some may not • Please don‘t take the ―Wait and see‖ approach – you are taking a lot of risk and the chances of improvement get lower as the child grows older
    32. 32. Medication • There is no medication to treat autism • There are medications to treat symptoms e.g. • Anxiety / Depression / Bipolar Disorder • Aggression • ADHD • But if you don‘t understand the mechanism . . . . How can you recommend a drug? • Some Promising possibilities • For Social Deficits - Intranasal Oxytocin [26 – 32]
    33. 33. Diet • The link between GI issues and ASD is very interesting • ―Research is showing that a common cause of autistic children acting out is simply because they're constipated -- which, from there, can mean they stop sleeping and eating well.‖ [33] • Some early results suggest that a Ketogenic diet – High Fat / Low Carb (known to be beneficial to kids with epilepsy) may be of help [34] • Gluten-Free/Casein-Free diets . . . Being studied [36] • Again this is NOT advice . . .
    34. 34. Where do I get help? • Start with your Pediatrician (but keep your expectations in check). If they don‘t refer you . . . Find a new Pediatrcian. • Psychologist • A psychologist evaluates, diagnoses, treats, and studies behavior and mental processes • Psychiatrist • A psychiatrist is a physician (M.D.) who specializes in psychiatry. • Neurologist • A neurologist is a physician who specializes in neurology, and is trained to investigate, or diagnose and treat neurological disorders. • Neuropsychologist • Neuropsychology is often considered to be a mixture of neurology and psychology
    35. 35. Health Care Coverage • Some people are surprised to learn that ―Educational‖ therapies like ABA are not covered by the mental health parity act • Many states mandate ABA coverage but that covers HMOs • But many companies work across states and are covered by Federal mandates (―ERISA‖) which do NOT mandate ABA (―self-funded‖) • Cognitive Behavioral Therapy is covered • Forget about RDI coverage **
    36. 36. Childhood dangers • Beyond medical issues which occur side-by-side with autism (e.g. Epilepsy) ASD kids are at risk from certain behaviors • Running away in particular • 49% of parents reported eloping at least once after age 4 years [37] • ―Of those who went missing, 24% were in danger of drowning and 65% were in danger of traffic injury.‖ [37] • ―accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger subsequent to wandering/elopement.‖ [38]
    37. 37. Key Take-Aways • ―The Spectrum‖ covers a big range • Early and Intensive Behavioral Intervention is key • Many potential causes . . . . . • Many hopes for treatment in addition to EIBI • Many Doctors, Educators, normal people are just beginning to learn about Autism . . . You as the parent are your child‘s best advocate. • Teach your child to swim!
    38. 38. Questions?
    39. 39. References [1] http://en.wikipedia.org/wiki/Autism [2] http://en.wikipedia.org/wiki/Conditions_comorbid_to_autism_spectrum_disorders [3] https://en.wikipedia.org/wiki/Historical_figures_sometimes_considered_autistic [4] Autism Speaks http://blog.autismspeaks.org/2010/10/22/got-questions-answers-to-your-questions-from-the- autism-speaks%E2%80%99-science-staff-2/ [5] Wall Street Journal http://online.wsj.com/article/SB10000872396390444813104578016280501020620.html [6] Closely spaced pregnancies are associated with increased odds of autism in California sibling births. http://www.ncbi.nlm.nih.gov/pubmed/21220394 [7] Autism, Autoimmune Disease and Socioeconomic Status http://www.omicsgroup.org/journals/2165-7890/2165-7890-2-104.pdf [8] Use of Birth Certificates to Examine Maternal Occupational Exposures and Autism Spectrum Disorders in Offspring http://onlinelibrary.wiley.com/doi/10.1002/aur.1275/abstract;jsessionid=DEFEE5094043BFDB87B415B13B0165EC.d04t03?de niedAccessCustomisedMessage=&userIsAuthenticated=false
    40. 40. [9]"In Autism, the Importance of the Gut Behavior problems may be explained by serotonin and bacteria in the bowels‖ http://www.theatlantic.com/health/archive/2013/06/in-autism-the-importance-of-the-gut/276648/#comments [10] B-Lymphocytes from a Population of Children with Autism Spectrum Disorder and Their Unaffected Siblings Exhibit Hypersensitivity to Thimerosalhttp://scholar.google.com/scholar_url?hl=en&q=http://downloads.hindawi.com/journals/jt/2013/8 01517.pdf [11] BPA May Affect the Developing Brain by Disrupting Gene Regulation http://www.sciencedaily.com/releases/2013/02/130225153122.ht m [12] Intrapartum oxytocin administration and neonate sensitive period disruption could also explain increase in autism risk. http://pediatrics.aappublications.org/content/128/2/344.short/reply#pediatrics_el_51553 [13] Use of Birth Certificates to Examine Maternal Occupational Exposures and Autism Spectrum Disorders in Offspring http://onlinelibrary.wiley.com/doi/10.1002/aur.1275/abstract;jsessionid=DEFEE5094043BFDB87B415B13 B0165EC.d04t03?deniedAccessCustomisedMessage=&userIsAuthenticated=false [14] Urbanicity and Autism Spectrum Disorders http://link.springer.com/content/pdf/10.1007%2Fs10803-013-1875-y.pdf#page-1
    41. 41. [15] ―Employment Among Youth With an Autism Spectrum Disorder‖ http://www.pediatricsdigest.mobi/content/129/6/1042.short [16] The costs of services and employment outcomes achieved by adults with autism http://www.hdc.lsuhsc.edu/employment/pdf/voc_rehab_cost_of_services__and_employment_outcomes_i n_us.pdf [17] http://www.bu.edu/autism/files/2010/03/2006-Leyfer-et-al- comorbid-disorders1.pdf [18] Floortime: http://www.autismspeaks.org/what- autism/treatment/floortime [19] ESDM: http://www.autismspeaks.org/what- autism/treatment/early-start-denver-model-esdm
    42. 42. [20] Early Behavioral Intervention Is Associated With Normalized Brain Activity in Young Children With Autism http://www.ncbi.nlm.nih.gov/pubmed/23101741 [21] Evidence for Effectiveness of ABA as a Treatment for Autismhttps://olis.leg.state.or.us/liz/2013R1/Downloads/CommitteeMeetingDocument /13979 [22] Early Intensive Behavioral Treatment: Replication of the UCLA Model in a Community Setting.‖ Journal of Developmental Pediatrics, 2006; Vol. 27, No. 2: pp145-155 [23] ―Early Behavioral Intervention Is Associated With Normalized Brain Activity in Young Children With Autism‖ JOURNAL OF THE AMERICAN ACADEMY OF CHILD & ADOLESCENT PSYCHIATRY VOLUME 51 NUMBER 11 NOVEMBER 2012 [24] Dawson, G. et al, ―Randomized, Controlled Trial of an Intervention for Toddlers With Autism: The Early Start Denver Model.‖ Pediatrics, 2010; Vol. 125, No. 1: pp17- 23 http://pediatrics.aappublications.org/content/125/1/e17.full.pdf+html [25] ―Optimal outcome in individuals with a history of autism‖ J Child Psychol Psychiatry. 2013 Feb;54(2):195-205 http://www.ncbi.nlm.nih.gov/pubmed/23320807 http://www.childrenshospitalschool.leicester.sch.uk/attachments/article/185/Optimal% 20outcome%20....autism%20%20Fein%20et%20al%202012.pdf
    43. 43. [26] "Social effects of oxytocin in humans: context and person matter‖ http://www.wjh.harvard.edu/~zaki/bartzEtAl_2011_revOXT.pdf [27] Intranasal oxytocin increases covert attention to positive social cues. http://www.ncbi.nlm.nih.gov/pubmed/23146328 [28] "Oxytocin differentially modulates eye gaze to naturalistic social signals of happiness and anger‖http://www.psychologie.uni- freiburg.de/abteilungen/psychobio/team/publikationen/odmegtnssohaa [29] Oxytocin can make rhesus macaques pay more attention to each other http://www.news-medical.net/news/20120106/Oxytocin-can-make-rhesus- macaques-pay-more-attention-to-each-other.aspx [30] Oxytocin Enhances Amygdala-Dependent, Socially Reinforced Learning and Emotional Empathy in Humans http://www.jneurosci.org/content/30/14/4999.full [31] Oxytocin Modulates Neural Circuitry for Social Cognition and Fear in Humans http://www.jneurosci.org/content/25/49/11489.long [32] Oxytocin enhances resting-state connectivity between amygdala and medial frontal cortex. http://www.researchgate.net/publication/225078206_Oxytocin_enhances_resting- state_connectivity_between_amygdala_and_medial_frontal_cortex
    44. 44. [33] In Autism, the Importance of the Gut http://www.theatlantic.com/health/archive/2013/06/in-autism-the- importance-of-the-gut/276648/#comments [34] Ketogenic Diet Improves Core Symptoms of Autism in BTBR Micehttp://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.po ne.0065021 [35] Markers of Celiac Disease and Gluten Sensitivity in Children with Autismhttp://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal. pone.0066155 [36] http://blog.autismspeaks.org/2011/11/11/how-helpful-is-the-casein- gluten-free-diet/ [37] ―Occurrence and Family Impact of Elopement in Children With Autism Spectrum Disorders‖ http://pediatrics.aappublications.org/content/130/5/870.abstract [38] http://nationalautismassociation.org/resources/autism-safety-facts/
    45. 45. Advanced Stuff
    46. 46. Neuroanatomy of autism (2008) Trends Neurosci. 2008 Mar;31(3)

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