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State of the State in Autism: Analysis of the Autism Numbers and the ‘Autism Problem’ from a National and Virginia Perspective Carol Schall, PhD Executive

Dec 22, 2015

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  • Slide 1
  • State of the State in Autism: Analysis of the Autism Numbers and the Autism Problem from a National and Virginia Perspective Carol Schall, PhD Executive Director, Virginia Autism Resource Center [email protected]
  • Slide 2
  • Helpful Web Sites on Autism zLearn the Signs - Act Early: yhttp://www.cdc.gov/ncbddd/autism/actearly/default. htmhttp://www.cdc.gov/ncbddd/autism/actearly/default. htm zFirst Words Project: yhttp://firstwords.fsu.eduhttp://firstwords.fsu.edu zNational Institutes of Health Article on Autism: yhttp://www.nimh.nih.gov/publicat/autism.cfmhttp://www.nimh.nih.gov/publicat/autism.cfm zAutism Education Network: ywww.autismeducation.netwww.autismeducation.net
  • Slide 3
  • Helpful Web Sites on Autism zThe Organization for Autism Research yhttp://www.researchautism.org/http://www.researchautism.org/ zAutism Speaks yhttp://www.autismspeaks.org/http://www.autismspeaks.org/ zCure Autism Now yhttp://www.cureautismnow.org/http://www.cureautismnow.org/ zCommunity Report from the Autism and Developmental Disabilities Network ywww.cdc.gov/mmwr/mmwr_sswww.cdc.gov/mmwr/mmwr_ss
  • Slide 4
  • What is autism? zLifelong neurological disability that can profoundly impact how the individual interacts with the world. zImpacts how the person communicates, interacts with others and processes sensory information.
  • Slide 5
  • Autism AspergersSyndrome Pervasive Developmental Disorder-NOS Pervasive Developmental Disorders- The Autism Spectrum Childhood Disintegrative Disorder Retts
  • Slide 6
  • Why should we diagnose early? zOf 1,000 children in your locality between the ages of birth to 3, how many should you expect to have autism? y4 to 7 zThe symptoms of autism are present from the first year of life. zWhat is the average age for diagnosis in the U.S.? y3 1/2 years zAverage age of diagnosis in Virginia? y6 to 7 years old zWhen does intervention for children with autism have the greatest impact? yWhen it begins before 3 1/2 years
  • Slide 7
  • Incidence zFrom 1990 to 2004, the incidence of autism has increased by 989% zThis Data does not include all forms of autism, only those with primary diagnosis zWe can now diagnose Autism Spectrum Disorders confidently at age 2 and are working hard on the characteristics of autism between age 1 and 2.
  • Slide 8
  • It is plausible that children with ASD could represent 1% of school age children
  • Slide 9
  • Incidence zFrom 1990 to 2004, the incidence of autism has increased by 989% zThis Data does not include all forms of autism, only those with primary diagnosis zWe can now diagnose Autism Spectrum Disorders confidently at age 2 and are working hard on the characteristics of autism between age 1 and 2.
  • Slide 10
  • VA Department of Education Incidence Data
  • Slide 11
  • What is driving the increase? zBetter Diagnosis yMore Awareness zWidening the Spectrum yAdded Aspergers Syndrome in 1994 zDiagnostic Substitution yPeople are now dxed with ASD were previously dxed with other disabilities zMore Autism?
  • Slide 12
  • Number of Students by Age for 1997 to 2004 (Data for Birth to 2 not available before 2002)
  • Slide 13
  • 170 325
  • Slide 14
  • Number of Students by Age for 1997 and 2004 (Data for Birth to 2 not available before 2002)
  • Slide 15
  • Autism in Relationship to all of Special Education -- Total in Special Education = 175,577 (2004, VADOE) AUTISM, 2.7%
  • Slide 16
  • What is driving the increase? zBetter Diagnosis yMore Awareness zWidening the Spectrum yAdded Aspergers Syndrome in 1994 zDiagnostic Substitution yPeople are now dxed with ASD were previously dxed with other disabilities zMore Autism?
  • Slide 17
  • Challenges of Early Diagnosis of Autism in Virginia zIn 1997, there were 11, 3 year olds with autism counted in child count zIn 2004, there were 416, 10 year olds with autism counted in child count zIn 1997, we missed 405, 3 year old children who would later be diagnosed and eligible for services as individuals with autism. zThat represents 97% of the children who were later eligible under the category, autism.
  • Slide 18
  • Just How Many Children with ASD should we expect? zNumber of school children in Virginia, 2002 - 1,445,585 zIncidence of autism - 4 to 7 in 1,000 z5,782 to 10,119 zActual number of individuals with Autism in 2002 - 3350 (primary dx only!) z43% to 63% under diagnosed in Virginia
  • Slide 19
  • Challenges of Autism in Virginia zAutism is emerging as the 5th disability when considering those who have cognitive, learning, behavioral, or sensory motor disabilities zThe state workforce of service providers receive scant (if any) training in the unique profile and support needs of persons with Autism
  • Slide 20
  • Estimate of the Current Level of Services by Ages School Age Early Childhood Adults
  • Slide 21
  • The State of the State Challenges: zNo statewide system exists zLack of a central state (public sector) home for autism, i.e., DD agency zLack therefore of central responsibility and coordination of policy and services across the lifespan for a person with autism zComplicated further by the Virginia model for strong local control
  • Slide 22
  • State of the State Opportunities: zStrong interest, energy, need and expertise exists throughout the state zSeveral examples of quality programming exist in the state zA number of coordinating initiatives already underway in the state zAutism is on the radar screen, locally, statewide and nationally like never before
  • Slide 23
  • System Building Approaches zMicro system needs: Person with autism Family Mezzo system needs: Service providers Both individuals and organizations Macro system needs: State systems Academic, service and government
  • Slide 24
  • In General zMicro: Assess, evaluate individuals with autism Guide, support families Mezzo: Training for schools, other agencies, etc. Sponsored workshops for a variety of audiences Macro: State agency alliances
  • Slide 25
  • In Virginia -- Micro Services zEarly Childhood yLocal Coordinating Councils yEstablished Medical Assessments ySchool Age yLocal School Districts yVARC, CAS zAdult yDMHMRSAS and DMAS yVARC, CAS
  • Slide 26
  • In Virginia -- Mezzo Services zEarly Childhood yPart - C Office yVARC, CAS zSchool Age yDOE yT-TACs, VARC, CAS zAdults yDMHMRSAS yVARC, CAS
  • Slide 27
  • In Virginia -- Macro Services zEarly Childhood yPart-C Autism Initiative yVARC, CAS yThe Virginia Autism Council zSchool Age yDOE, SSEAC, yT-TAC Autism Priority Project yVARC, CAS yThe Virginia Autism Council zAdult yDMHMRSAS, DMAS yVARC, CAS yThe Virginia Autism Council
  • Slide 28
  • The Virginia Autism Council zThe Virginia Autism Council is a state-supported council of autism experts seeking to define needed skill competencies and to advance higher education, training and educational opportunities for personnel and caregivers supporting individuals with autism. This website is Virginia's clearinghouse on best practices and research-based education and training opportunities to advance personnel development and knowledge regarding autism in Virginia.
  • Slide 29
  • The Virginia Autism Council Mission zThe Virginia Autism Council envisions individuals with autism fully participating in every aspect of society. The Virginia Autism Council's mission is to provide leadership and coordination for state agencies and service providers and to increase knowledge and understanding of autism in the wider community in order to maximize outcomes for people with autism.
  • Slide 30
  • The Virginia Autism Council zThe Virginia Autism Council exists to: zGather, synthesize and disseminate knowledge on behalf of citizens with autism; zDevelop best practice tools that serve as catalysts and that promote exemplary training and services; zPromote the interests of citizens with autism and those who are affected by autism; zIdentify and address gaps in the system structure related to autism.
  • Slide 31
  • In This Context... The Virginia Autism Council and the Skill Competencies
  • Slide 32
  • The Web Site for the Full Document http://www.autismtrainingva.org/doc uments/Final_Competencies.doc
  • Slide 33
  • How it was developed zA highly experienced statewide committee came to agreement on best practice and competence zWe sent this document out to statewide and national experts zWe also submitted this to statewide consultant committees to review and provide feedback zWe then revised the document based on the feedback we received
  • Slide 34
  • People who participated in the development of the competencies zCarol Schall, Linda Oggel, Sue Palko, Janet Hill, Cherie Stierer, Patty Hawkins, Brenda Fogus, Leslie Daniel, Rosemarie McGuinnes, Elin Doval, Karen Durst, Sally Chappel, John Richmond, and Mark Diorio
  • Slide 35
  • Statewide and National Experts who provided feedback zPasquale J. Accardo, M.D, Virginia Commonwealth University zBarbara Becker-Cottrill, Ed.D., Marshall University zGlen Dunlap, Ph.D, University of South Florida zKathleen Gould, Ph.D., Illinois Autism/PDD Tr