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Personal background

Stacy Cayce Chapter Rep for Autism Society of Oregon Region 8 – Washington, Tillamook, Clatsop, Columbia ASO Board Member Parent to 6 year old with ASD. Personal background. Autism Society of Oregon. A grass roots non-profit started by parents.

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Personal background

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  1. Stacy Cayce Chapter Rep for Autism Society of Oregon Region 8 – Washington, Tillamook, Clatsop, Columbia ASO Board Member Parent to 6 year old with ASD Personal background

  2. Autism Society of Oregon • A grass roots non-profit started by parents. • State Chapter of the national organization, the Autism Society of America • Our Mission: To empower individuals with Autism, their families and their service providers to improve the quality of their lives through support and information. • Our Goals: To increase awareness of needs, interests, problems and solutions related to Autism across the lifespan in Oregon’s local communities, state service provider systems, and government agencies. Create a statewide information and resource network to promote more mutual communication and better service delivery across Oregon. www.oregonautism.com

  3. What does ASO do? • Resource network in Oregon with 8 regions covering every county in the state • ASO facilities support groups, including specialized groups such as a Sibling Support Group (Sibshop) and a Social Language Group for girls living with autism. • Temple Grandin, Dr. John Green, Dennis Debbaudt, Geri Newton, Dr. Arthur Kriegsman: all speakers that ASO has hosted in Oregon. These presentations focus on topics that parents, educators and professionals are currently experiencing. The attendees take away information that they can implement immediately with the person living with autism, be they a child, adolescent or adult. • ASO creates awareness during April, Autism Awareness Month in Oregon with the Autism Walk-a-thon, Art Shows, Auctions, fundraisers, Autism Awareness Night with the Portland Trail Blazers and other local sport teams. • ASO has available, all free of charge, CD Rom’s for new parents entitled “I just received the Diagnosis. What do I do tomorrow?”, DVD’s on Severe Autism Challenges featuring biomedical and behavioral treatments, Lending Library program, various papers translated into Spanish on our website, information on how to register your child into the 911 database, Respite Care Resource Guide, and resource guide for new families. www.oregonautism.com

  4. Overview of Autism

  5. Overview • Symptoms • Incidence • Genetics vs. Environment? • Behavior Therapy

  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. What Is Autism? Autism is a developmental disorder that begins at birth or within the first two-and-a-half years of life. Most autistic children are perfectly normal in appearance, but spend their time engaged in puzzling and disturbing behaviors which are markedly different from those of typical children. Less severe cases may be diagnosed with Pervasive Developmental Disorder (PDD) or with Asperger's Syndrome (these children typically have normal speech, but they have many "autistic" social and behavioral problems).

  8. Core symptoms: Major impairments: • Social Skills/Relationships • Communication • Stereotypical Behaviors • Desire for Sameness Autism is a spectrum disorder: Autism / PDD-NOS/ Asperger Syndrome – key impairment in social skills is common to all

  9. Characteristics of Autism Spectrum Disorder Insistence on sameness; resistance to change Difficulty in expressing needs, using gestures or pointing instead of words Repeating words or phrases in place of normal, responsive language Laughing (and/or crying) for no apparent reason showing distress for reasons not apparent to others Preference to being alone; aloof manner Tantrums Difficulty in mixing with others Not wanting to cuddle or be cuddled Little or no eye contact Unresponsive to normal teaching methods Sustained odd play Spinning objects Obsessive attachment to objects Apparent over-sensitivity or under-sensitivity to pain No real fears of danger Noticeable physical over-activity or extreme under-activity Uneven gross/fine motor skills Non responsive to verbal cues; acts as if deaf, although hearing tests in normal range.

  10. 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)

  11. 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 • 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 )

  12. 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 • Stereotyped and repetitive use of language or idiosyncratic language • Lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level

  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 • Stereotyped and repetitive motor mannerisms (e.g hand or finger flapping or twisting, or complex whole body movements) • Persistent preoccupation with parts of objects • 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 • The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder.

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

  15. Diagnostic tools • 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 • CHAT - Checklist for Autism in Toddlers

  16. Early onset vs. regression Source: Autism Research Institute

  17. 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

  18. 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

  19. 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

  20. 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

  21. Why rising rate of autism? Partly due to better awareness/diagnosis, but that is only modest effect (per study by MIND Institute) Not fully due to genetics – gene pool changes slowly Environmental factors ( some studies seem to point towards mercury, antibiotics, MMR, pesticides, iodine deficiency, other?)

  22. Prognosis? Autism: many 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

  23. Autism Impact on the Family: • Higher divorce rate often leaving one parent to care and work • One parent will not be able to work, stay home to take care of individual • Cannot find daycare • Lots of stress on all members, younger and older siblings • Medical bills for services not covered by insurance • Denial from other family members

  24. Autism Impact on the Community: • Need for housing and consistent monitoring for those that are high functioning • Need for jobs and employers that can accommodate • Life long care, ASD is not age defining, care after parents or caregivers pass away • Due to literal interpretations of world around them may have problems with law enforcement or employers

  25. “Behavior is determined by its consequences.” B.F. Skinner Behavioral therapies • ABA – most widely accepted/implemented – evidence based – well documented results • Pivotal Response Training • Carbone method • Floortime • RDI

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

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