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.

State of the State in Autism:Analysis of the Autism Numbers and the ‘Autism Problem’ from a National and Virginia Perspective

Carol Schall, PhDExecutive Director, Virginia Autism Resource [email protected]

Helpful Web Sites on Autism

Learn the Signs - Act Early: http://

www.cdc.gov/ncbddd/autism/actearly/default.htm

First Words Project: http://firstwords.fsu.edu

National Institutes of Health Article on Autism: http://www.nimh.nih.gov/publicat/autism.cfm

Autism Education Network: www.autismeducation.net

Helpful Web Sites on Autism

The Organization for Autism Research http://www.researchautism.org/

Autism Speaks http://www.autismspeaks.org/

Cure Autism Now http://www.cureautismnow.org/

Community Report from the Autism and Developmental Disabilities Network www.cdc.gov/mmwr/mmwr_ss

What is autism?

Lifelong neurological disability that can profoundly impact how the individual interacts with the world.

Impacts how the person communicates, interacts with others and processes sensory information.

AutismAutism

Asperger’sAsperger’sSyndromeSyndrome

Pervasive Pervasive Developmental Developmental Disorder-NOSDisorder-NOS

Pervasive Developmental Disorders- Pervasive Developmental Disorders- The Autism SpectrumThe Autism Spectrum

Childhood Childhood Disintegrative Disintegrative DisorderDisorder

Rett’sRett’s

Why should we diagnose early? Of 1,000 children in your locality between the ages of

birth to 3, how many should you expect to have autism? 4 to 7

The symptoms of autism are present from the first year of life.

What is the average age for diagnosis in the U.S.? 3 1/2 years

Average age of diagnosis in Virginia? 6 to 7 years old

When does intervention for children with autism have the greatest impact? When it begins before 3 1/2 years

Incidence

From 1990 to 2004, the incidence of autism has increased by 989%

This Data does not include all forms of autism, only those with primary diagnosis

We can now diagnose Autism Spectrum Disorders confidently at age 2 and are working hard on the characteristics of autism between age 1 and 2.

It is plausible that children with ASD could represent 1% of school age children

Incidence

From 1990 to 2004, the incidence of autism has increased by 989%

This Data does not include all forms of autism, only those with primary diagnosis

We can now diagnose Autism Spectrum Disorders confidently at age 2 and are working hard on the characteristics of autism between age 1 and 2.

VA Department of Education Incidence Data

480 547 622699 808

91811521333

15211953

22232702

3350

3966

4751

0500

1000

1500

2000

2500

30003500

4000

4500

5000

1990 1992 1994 1996 1998 2000 2002 2004

What is driving the increase?

Better Diagnosis More Awareness

Widening the Spectrum Added Asperger’s Syndrome in 1994

Diagnostic Substitution People are now dx’ed with ASD were

previously dx’ed with other disabilitiesMore Autism?

Number of Students by Age for 1997 to 2004 (Data for Birth to 2 not available before 2002)

0

100

200

300

400

500

0 2 4 6 8 10 12 14 16 18 20 22+

19971998199920002001200220032004

Number of Students by Age for 1997 to 2004 (Data for Birth to 2 not available before 2002)

0

100

200

300

400

0 2 4 6 8 10 12 14 16 18 20 22+

19971998199920002001200220032004

170

325

Number of Students by Age for 1997 and 2004 (Data for Birth to 2 not available before 2002)

0

200

400

600

0 2 4 6 8 10 12 14 16 18 20 22+

19972004

Autism in Relationship to all of Special Education -- Total in Special Education = 175,577 (2004, VADOE)

MR SD

HI SLI

VI ED

OI OHI

SLD DB

MD AUT

TBI DD

AUTISM,

2.7%

What is driving the increase?

Better Diagnosis More Awareness

Widening the Spectrum Added Asperger’s Syndrome in 1994

Diagnostic Substitution People are now dx’ed with ASD were

previously dx’ed with other disabilitiesMore Autism?

Challenges of Early Diagnosis of Autism in Virginia

In 1997, there were 11, 3 year olds with autism counted in child count

In 2004, there were 416, 10 year olds with autism counted in child count

In 1997, we missed 405, 3 year old children who would later be diagnosed and eligible for services as individuals with autism.

That represents 97% of the children who were later eligible under the category, autism.

Just How Many Children with ASD should we expect?

Number of school children in Virginia, 2002 - 1,445,585

Incidence of autism - 4 to 7 in 1,0005,782 to 10,119Actual number of individuals with

Autism in 2002 - 3350 (primary dx only!)

43% to 63% under diagnosed in Virginia

Challenges of Autism in Virginia

Autism is emerging as the 5th disability when considering those who have cognitive, learning, behavioral, or sensory motor disabilities

The state workforce of service providers receive scant (if any) training in the unique profile and support needs of persons with Autism

Estimate of the Current Level of Services by Ages

School Age

Early Childhood

Adults

The State of the StateThe State of the StateChallenges:No statewide system existsLack of a central state (public sector)

“home” for autism, i.e., DD agencyLack therefore of central responsibility

and coordination of policy and services across the lifespan for a person with autism

Complicated further by the Virginia “model” for strong local control

State of the StateState of the State

Opportunities:Strong interest, energy, need and

expertise exists throughout the stateSeveral examples of quality programming

exist in the stateA number of coordinating initiatives

already underway in the stateAutism is “on the radar screen”, locally,

statewide and nationally like never before

System Building ApproachesSystem Building ApproachesMicro system needs:Person with autismFamily• Mezzo system needs:Service providersBoth individuals and organizations• Macro system needs:State systemsAcademic, service and government

In GeneralIn GeneralMicro:Assess, evaluate individuals with autismGuide, support families• Mezzo:Training for schools, other agencies, etc.Sponsored workshops for a variety of

audiences• Macro:State agency alliances

In Virginia -- Micro Services

Early Childhood Local Coordinating Councils Established Medical Assessments School Age Local School Districts VARC, CAS

Adult DMHMRSAS and DMAS VARC, CAS

In Virginia -- Mezzo Services

Early Childhood Part - C Office VARC, CAS

School Age DOE T-TAC’s, VARC, CAS

Adults DMHMRSAS VARC, CAS

In Virginia -- Macro Services Early Childhood

Part-C Autism Initiative VARC, CAS The Virginia Autism Council

School Age DOE, SSEAC, T-TAC Autism Priority Project VARC, CAS The Virginia Autism Council

Adult DMHMRSAS, DMAS VARC, CAS The Virginia Autism Council

The Virginia Autism Council

The 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.

The Virginia Autism Council Mission

The 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. 

The Virginia Autism Council

The Virginia Autism Council exists to:

Gather, synthesize and disseminate knowledge on behalf of citizens with autism;

Develop best practice tools that serve as catalysts and that promote exemplary training and services;

Promote the interests of citizens with autism and those who are affected by autism;

Identify and address gaps in the system structure related to autism.

In This Context . . .

The Virginia Autism Council and the Skill Competencies

The Web Site for the Full Document

http://www.autismtrainingva.org/documents/Final_Competencies.doc

How it was developed

A highly experienced statewide committee came to agreement on best practice and competence

We sent this document out to statewide and national experts

We also submitted this to statewide consultant committees to review and provide feedback

We then revised the document based on the feedback we received

People who participated in the development of the competencies

Carol 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

Statewide and National Experts who provided feedback

Pasquale J. Accardo, M.D, Virginia Commonwealth University

Barbara Becker-Cottrill, Ed.D., Marshall University Glen Dunlap, Ph.D, University of South Florida Kathleen Gould, Ph.D., Illinois Autism/PDD Training and

Technical Assistance Project Fred Orelove, Ph.D. Virginia Commonwealth University Cathy Pratt, Ph.D., Indiana University Barry M. Prizant, Ph.D. CCC-SLP, Childhood Communication

Services Johannes Rojahn, Ph.D., George Mason University Brenda C. Seal, Ph.D., James Madison University Brenda Smith-Myles, Ph.D., University of Kansas Martha Snell, Ph.D., University of Virginia

Who was on the statewide committees?

Bradford Hulcher, Parent of a person with ASD; Jo Read, Ph.D., Director of Special Education; Jessica Philips, BCBA; Rachel Reynolds, SLP; Kate Besley, Public School Counselor; Amy B. Petin, Special Education Teacher; Jody Davieds, BCBA; Staci Carr, Executive Director, Private Agency; Amy McCarty, Instructional Assistant; John Rosch, Transition Specialist; Andrew Yusi; Sheri Leddy, Special Education Coordinator; Judy Ericksen, Occupational Therapist; Roger Younker, Staff Development Specialist, Mental Retardation Services; Tracey Bosanoe, Special Education Teacher; Cheryl Mendis, Autism Teacher; Nancy T. Harlan, Speech-Language Pathologist; MinnieTom H. Myer, Parent of Person with ASD; Bobbi, Bartley, Occupational Therapist; Marcia Kennedy, Behavioral Consultant; Amy Schwiteboer, Transition Representative; Greg Jacob, Principal; Karen Jackson, Parent of a person with ASD; Kay Oliver, Parent of a person with ASD; Ron Bowers, Autism Teacher; Jessica Herd, Mental Retardation Case Manager; Terry Escobar, BCBA; Betty Bradshaw, General Education Teacher; Carol Wickersham, Special Education Supervisor; Sara Ingram, Program Director at Developmental Disabilities Center; Teresa Lyons, Disability Services Coordinator; Shirl Light, Parent of a person with ASD; Barbara Shult, Special Education Region Coordinator; Elisabeth T. Bivens, Disability Services Coordinator; Julia Artrip, Parent of a person with ASD; and Elizabeth Brammer, Director of Early Childhood Intervention Services.

Who should have these competencies?

Paraprofessionals: refers to anyone directly supporting infants, children, or adults in a non-professional capacity.

Professional: refers to direct service professional staff within their first-to-third years of practice. These might be new teachers, counselors, psychologists, therapists, and others, as well as people experienced in their professions, but who have limited knowledge of ASD.

Master Professional: refers to direct service professionals who have worked within their domain and with people with ASD for more than three years.

Advanced Degree, Program Developer, or Specialist: refers to those individuals who have pursued additional certification or degrees (for example Sensory Integration Certification, Board Certified Behavior Analyst, etc.) and /or those who have extensive experience and training pertinent to supporting people with ASD.

How can we use the competencies?

Assist providers in identifying their areas of need for professional development;

Guide development of a program that would strictly address the needs of people who plan on working with children and adults with autism.;

Guide the development of university-based classes to augment existing programs;

Serve as background to incorporate into existing programmatic instruction if universities or others preparing paraprofessionals or professionals consider additional program or class development not practical; and

Guide training and staff development for direct service staff who serve individuals with autism spectrum disorders.

What is in the Skill Competencies?

Competency Areas

General Autism: addresses basic information regarding what the diagnosis of ASD means.

Individualization and Support Strategies: addresses planning for appropriate assessment and program planning for individuals with an ASD.

Communication: focuses on one of the primary diagnostic areas of need for ASD.

Social Skills: focuses on one of the primary diagnostic areas of need for ASD.

Behavior: focuses on determining messages communicated by behaviors and developing positive plans to teach new skills.

Sensory Motor Development: addresses the need for some individuals with an ASD to have sensory motor supports.

Sample Competencies

1.1K Understands the characteristics and diagnosis of autism as defined by the most recent version of the Diagnostic and Statistical Manual and definition/description of the Virginia Department of Education.

1.1.1S Lists and explains the characteristics of autism (Communication, sensory responses and needs, stereotypical behavior, socialization and social skill development).

1.1.2S Describes typical child development (for example, communication, sensory responses, and needs, cognitive, behavior, and social skill development).

1.1.3S Describes potential courses of development and outcomes in individuals with ASD from infancy to adulthood. (Joint attention, imitation, failure to use gestures, failure to use symbols).

1.1.4S Describes the basic differences within Pervasive Developmental Disorders: i.e., Autism, Pervasive Developmental Disorder- Not Otherwise Specified (PDD-NOS), Asperger Disorder, Retts Disorder, and Childhood Disintegrative Disorder (CDD).

1.1.5S Describes the current understanding of etiology and prevalence of ASD.

Knowledge Areas in General Autism

1.1K Understands the characteristics and diagnosis of autism as defined by the most recent version of the Diagnostic and Statistical Manual and definition/description of the Virginia Department of Education.

1.2K Understands the implications of the above characteristics and their impact on the individualized program.

Knowledge Areas in General Autism

1.3K Understands the impact of common medical issues for persons with autism (for example: seizure disorders, chronic otitis media, chronic constipation or diarrhea, eating and sleep issues, use of psychotropic medications, etc.).

1.4K Understands the implications of ‘dual’ diagnoses (autism and any other diagnosis from the latest version of the Diagnostic and Statistical Manual of Mental Disorders) and co-morbidity.

Knowledge Areas in Individualization and Support Strategies

2.1K Understands how to assess an individual’s strengths and weaknesses and develop an individualized program using evidence-based and promising practices

2.2K Understands and implements intervention activities to support the individual’s goals and objectives.

Knowledge Areas in Communication

3.1K Understands components of communication (including form, semantics, pragmatics, and processing and its impact on the day-to-day experience of an individual with autism.

3.2K Understands a variety of strategies to increase an individual’s communication abilities.

Knowledge Areas in Social Skills

4.1K Understands social skill development and the unique social skill deficits and challenges associated with ASD, including but not limited to: relationship development and maintenance, play/recreation, non-verbal interaction, functional imitation, emotional expression, emotional understanding, self-advocacy, work, and/or the role of challenging behaviors versus social skill deficits.

4.2K Understands the importance of social relatedness and the need for social interaction, social rules, and age appropriate leisure activities.

Knowledge Areas in Behavior

5.1K-Understands factors that influence behavior and the components of behavior analysis (antecedents, behavior, and consequences).

5.2K Understands how to evaluate the effectiveness of a behavior plan reliably and effectively.

Knowledge Areas in Sensory Motor Development

6.1K Understands the sensory systems, sensory processing, and sensory motor development.

6.2K Understands the implications or influences of sensory processing when developing the complete program

Resources as a result of the competencies!

The Virginia Autism Council’s web site www.autismtrainingva.org Access to web course – Fundamentals of

Autism ($50.00, 9 clock hour course offered through GMU once monthly)

Statewide training calendar Tuition reimbursement program --

$300.00 per course that qualifies based on the competencies

University Programs! Longwood University Courses

Dr. R. Mathews, 395 2532, E - mail: [email protected]

James Madison University Brenda Fogus, Dept of Exceptional Education, JMU, 540

568-2877, [email protected] Radford University

Dr. Leslie Daniels [email protected] Regent University

[email protected] Virginia Commonwealth University

Dr. Carol Schall, [email protected] Dawn Hendricks, [email protected]

The VCU Courses

Course 1 -- Understanding Autism Spectrum Disorders

Course 2 -- Assessment, Curriculum, and Teaching Methods for Autism Spectrum Disorders

Course 3 -- Supporting Behavior and Social Skills for Autism Spectrum Disorders

Course 4 -- Instructional Design and Practicum Experience for Autism Spectrum Disorders

The purpose of life is to love, work and play well.

Sigmund Freud

[email protected]