Autism Society of America

							       MCH Partnership Meeting
         Alexandria, Virginia

    The Autism Community:
Who We Are, Where We Are Going,
     Where We Should Be

                  Lee Grossman
                President and CEO
            Autism Society of America
                 October 15, 2007
The Autism Community is 10’s of
         Millions Large

           GROWING
 and affecting all in our society
                                               Autism Facts

•   1 in 150 births…
•   Over 1 to 1.5 million Americans…
•   Approx 12.5-17 million family members
•   Fastest-growing developmental disability -- rate10 - 17 %
•   Growth comparison during the 1990s
          ~U.S. population increase: 13%
          ~Disabilities increase: 28.4%
          ~Autism increase: 1,354 %
•   US $90 billion annual health care cost
          ~90% of costs are in adult services
•   Cost of treatment can be reduced by 2/3 with early
          diagnosis and intervention
•   In 10 years, the annual cost will be $200-400 billion
Autism…
                    Autism Growth Comparison Chart
                                               (Source: Autism Society of America)




                                                                           1,354 %:
                                                                               Autism 1
                                                                           Rates of Autism :
                                                                            3 in 500 births 2
                                                                            60+ cases/day/U.S.3


                                                                            28.4 %:
                                                                             All Disabilities       1

                                                                               13 %:
                                                                                U.S. Population 4
1
    U.S. Dept. of Education Report to Congress on IDEA 2002 (school years 1991/92--2000/2001;
2
    Centers For Disease Control & Prevention (2004); 3 Autism Society of America statistics based
    on CDC rates and U.S. Census; 4 U.S. Census Bureau (1999-2000)
A tidal wave is coming…
                                               Autism Facts

•   1 in 150 births…
•   Over 1 to 1.5 million Americans…
•   Approx 12.5-17 million family members
•   Fastest-growing developmental disability -- rate10 - 17 %
•   Growth comparison during the 1990s
          ~U.S. population increase: 13%
          ~Disabilities increase: 28.4%
          ~Autism increase: 1,354 %
•   US $90 billion annual health care cost
          ~90% of costs are in adult services
•   Cost of treatment can be reduced by 2/3 with early
          diagnosis and intervention
•   In 10 years, the annual cost will be $200-400 billion
                           Annual Cost of Autism on U.S. Economy
                                              Current Annual Cost: $90 Billion
                                    Estimated Annual Cost in 10 Years: $200-$400 Billion
                                                          (Source: Autism Society of America)




                                                                                                 $400 Billion 3

$400               $90 Billion 1
$300

$200
                                                                                            $200 Billion 2
$100

  $0
   2000             2002          2004           2006          2008            2010
   1
       Based on London School of Economics Study 2001 and U.S. autism prevalence rate of 1.5 million
   2
       ASA analysis of future cost growth based on 10-17% annual increase in autism prevalence
Autism is a social, economic
      and health crisis

    Autism is a National
         Emergency
Autism is an
 EPIDEMIC
    Autism is:
  Genetically based,
Neurological condition
• Complex Spectrum Disorder
• Developmental Disability
• Neurological Disorder
• Knows no racial, ethnic, or social
  boundaries
• Impacts social interaction, communication
  skills and the senses
• No known cause or cure
• No known singular effective treatment
  modality
            Common Characteristics
                 of Autism

Generalization

Communication

Abilities
           The Realities of Autism

• Complex disorder
• Unique research and therapeutic
  interventions needed
• Multifaceted and multi-agency approach
• Lifespan needs
• Population dramatically increasing
• Economic and Social Crisis
• Autism is Treatable
          The Critical Needs of the
            Autism Community
Autism Research
Early Diagnosis and Early
 Intervention for Children with
 Autism
Education for Children with
 Autism
Support and Services for Adults
 with Autism
                  Needs Assessment
Continue and increasing biomedical related
  research
Drastically increasing therapeutic research
Training of service providers
Public awareness campaign and early
  diagnosis
Implement recommendations of the National
  Research Council
Improving adult programs
Increase Private-Public Partnerships
A Dramatic, Proactive,
    Aggressive and
Coordinated Response
 from Multiple Federal
      Agencies
      Autism Spectrum
      Disorder Services
          Roadmap
http://www.nimh.nih.gov/autismiacc/asdroadmap.pdf
The increased number of children and adults diagnosed with ASD
is a growing and urgent concern for families, service providers,
and policy-makers, as the nation’s existing health, education, and
social service systems struggle to respond to the service needs of
this population in a comprehensive manner. Though a number of
effective services and funding options for individuals with ASD
exist, they tend to be scattered, fragmented, and poorly
coordinated. There are no widely accepted or implemented
service guidelines for ASD, and there are significant gaps in
knowledge about ASD among the professionals serving these
individuals. Even where services are available, public and private
financing are often inadequate to meet the needs of most
individuals with ASD and their families. The success and well
being of individuals with ASD and their families are affected by,
and in large part, depend on communities and their resources.
Thus, we must respond by developing community systems that
are integrated across service sectors and are collectively
responsible for achieving appropriate individual, family, and
community outcomes.
          Where We Need To Be
Expansion of C.A.R.E.
Treating the Medical Aspects of Autism
Environmental Concerns and
  Neurotoxicology
Adult Issues being Addressed
Psychosocial and Behavioral Interventions
Continued and Growing Awareness
Focus on Services and Interventions
The Autism Community Coming Together
            Expanding the Promise for Individuals
                  With Autism Act of 2007

• Treatments, Interventions, and Services Evaluation
  Task Force
• Demonstration Grants for Coverage of Treatments,
  Interventions, and Services
• Planning and Demonstration Grants for Services for
  Adults
• Expanding Access to Post-diagnosis Care
• GAO Study On Service Provision and Financing
• Emerging Needs Protection and Advocacy Program
• National Technical Assistance Center
    Whole Body Condition

•Prediction
•Prevention
•Reversal
  Improving the
  Quality of Life
        and
Maximizing Potential
      The Goal
Autism, in the next
  generation, will
become an accepted
 part of the human
     condition
                                         The ASA Basics

• Mission
   – Improving the lives of all affected by autism
• Vision
   – Autism Society of America (ASA) is the leading voice
     and resource of the entire autism community in
     education, advocacy, services, research and
     support. The ASA is committed to meaningful
     participation and self-determination in all aspects of life
     for individuals on the autism spectrum and their
     families. ASA accomplishes its ongoing mission
     through close collaboration with a successful network
     of chapters, members and supporters.
  Autism Society of
       America

www.autism-society.org