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Autism Parent Advisory Committee

Autism Parent Advisory Committee

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Autism Parent Advisory Committee

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  1. AutismParent Advisory Committee Linda Betzold and Sara DiFucci February, 11 2010

  2. Incidence of autism — Autism Spectrum Disorder is currently reaching epidemic levels • 1970s — 2 to 3 per 10,000 diagnosed with autism • 2007 — 1 per 150 according to the Center for Disease Control (CDC) • 2009 – 1 in 91children (AAP Report) • This number does NOT include: PDD, Asperger’s and other spectrum disorders. • Approximately 13% of US children have a developmental disability, ranging from mild disabilities such as speech and language impairments to serious developmental disabilities, such as intellectual disabilities, cerebral palsy, and autism. 

  3. Autism • Autism includes a genetic susceptibility that is triggered by environmental factors. • Autism is a medical disorder, NOT solely a brain disorder. • Most individuals with autism have environmental/immunological induced toxicity. • Therefore, autism is preventable, reversible and treatable.

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

  5. Three-Legged Stool Keeping Family Healthy TraditionalTherapies Biomedical Therapies

  6. Traditional Therapies • Behavioral • Social/emotional • Speech and language therapy • Occupational therapy • Physical therapy

  7. Behavioral • ABA – Applied Behavioral Analysis • DIR/Floortime — Developmental, Individual difference, Relationship-based model • TEACCH — Treatment and Education of Autistic and related Communication Handicapped Children • RDI — Relationship Development Intervention • Son-Rise Program

  8. Social/Emotional Skills Often the most neglected aspect of a child’s educational program Children with autism need to learn social skills differently than their typical peers Where to start: Frequent play dates with the ultimate friend (search for “bossy”) Facilitated with an experienced aide! Activities they love Go to preschool in unstructured environments Go to preschool with structure Try organized sports: karate, baseball, swimming – whatever appeals to the child Get ready for kindergarten

  9. Speech and Language Therapy Traditional speech language therapy is a must Speech — includes the movement of tongue, lip, cheek, throat, and upper body muscles to produce the sounds needed for talking; also includes elements of breath used for talking as well as the mechanics of voice or vocal production. Language — refers to the higher cortical functions such as the words, the sentence length and construction, and the ideas which are both understood (receptive language) and expressed (expressive language). Speech language therapy can be delivered within different methodology models PECS — Picture Communication Exchange System Augmentative communication devices PROMPT Technique Rapid Prompt Technique Verbal Behavior

  10. Occupational Therapy Occupational therapy is a must Occupational therapy can be delivered within different methodology models Sensory processing issues Impact motor planning Impact speech acquisition Impact attention Impact ability to manage behaviors Fine motor issues Daily living and self care skills

  11. Physical Therapy Not every child with autism needs physical therapy Get an evaluation Significant gross motor delays Significant low tone issues Coordination impacts socialization — kicking, throwing, catching, etc.

  12. Biomedical Therapies Food allergies/sensitivities Chemical allergies/sensitivities Inflammation – brain and GI tract Seizures Immune dysregulation/deficiency Toxicity issues Metabolic issues Mitochondrial issues

  13. Keeping the Family Healthy The diagnosis is devastating. Becomes easy to neglect other children, spouse and family members. Paying attention to these other relationships is key. Do not neglect your own health while caring for a special needs child. The divorce rate the U.S. is high enough, but odds increase when you have a special needs child; buck these odds and try to stay married. Special needs children do better in a two-parent family. Don’t ignore this leg of the stool!

  14. Autism’s Impact on Daily Family Life • Therapy sessions, medical appointments, and other autism-related activities can dominate the family schedule, leaving little time and energy left for typical family activities. • Stress levels associated with caring for a child with autism make marital issues more likely; divorce rates reported as high as 85% in families with autism. • The cost of treatments that are often not covered by health insurance place a huge strain on family finances. • Parents can be overwhelmed with the prospect of raising a child who has developmental difficulties, feeling under qualified and unsure of themselves. • Behavior issues common to autism can add to that isolation, making interactions with friends and family difficult, and simple outings to the grocery store or mall stressful events. • Normal sibling rivalry can become more intense in a family with a mixture of typically developing and autistic children; many siblings experience anger, resentment and frustration with their family life and then feel guilt or shame about having these feelings about their sibling with autism. • Physical strain can not be underestimated when caring for a child with autism — chronically ill, sleepless nights, tantrums, potty-training issues and more.

  15. Support Must Continue After the IEP Meeting Options and Advocacy — PUNS, respite, waiver programs, IEP support Department of Rehabilitation Services Pioneer Center for Human Services Pathways Life Skills Unlimited, Inc. Illinois Life Span Project NISRA NICA — Northern Illinois Center for Autism

  16. Support Must Continue After the IEP Meeting Equip for Equality Special Ed Advocacy Center (SEAC) COPAA — Council of Parent Attorneys and Advocates Wrightslaw — newsletter, website and conferences PEP — Parent and Education Partnership IATTAP — Illinois Autism Training Technical Assistance Program

  17. Support Must Continue After the IEP Meeting • Epilepsy Foundation of North/Central Illinois • Autism Society of Illinois • Autism One — The O’Hare Westin, May 24 through 30, 2010 • DAN! website and conferences — Defeat Autism Now! • TACA — Talk About Curing Autism

  18. TACA — Talk About Curing Autism • Parents of children with autism who volunteer to help other parents of children with autism, especially newly diagnosed • Monthly support meetings — informational speaker, free 300+ page Autism Journey Guide, free lending library, free resource materials, and parent-to-parent support • — tons of information, live chat, Parent Mentor Program • TACA Blueprints— step by step guide after diagnosis • or