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A Father's Global View of AutismA Father's Global View of Autism
Wales’ 3rd International Autism ConferenceWales’ 3rd International Autism ConferenceDevelopments in Autistic Spectrum Disorders – Past, Present and Future
23-24 April 2008Cardiff, Wales
Jeff Sell, Jeff Sell, Esq.Esq.
Why am I here?Why am I here?
Ben- “A blonde”Joe— “beanies…”
“the boys”
The rest of the story…”the girls”The rest of the story…”the girls”
Gracie Paula
Gracie Natalie
The Autism Society of America
ASA’s Mission:“Improve the lives of all affected by autism”
What is Autism?What is Autism?
• Autism is a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others.
• Autism is defined by a certain set of behaviors and is a "spectrum disorder" that affects individuals differently and to varying degrees.
Autism in the United StatesAutism in the United States
What is Autism ?What is Autism ?Autism is a pervasive neurological
disorder that impairs language development, communication and social interaction. blah, blah, blah…
Autism prevalence• 1/10,000 1976• 1/3000 1985 • 1/500 1996 • 2-6/1000 2002 • 1 in 160160 2004• 1 in 150 2006
Autism Facts (USA)• 1 in 150150 births…
• Over 1 to 1.51 to 1.5 million Americans…
• Approximately 12.5-1712.5-17 million family members
• Fastest-growing developmental disability -- rate10 - 17 %10 - 17 %
• Growth comparison during the 1990s
• U.S. population increase: 13%13%
• Disabilities increase: 28.4%28.4%
• Autism increase: 1,354 %1,354 %
• US $90$90 billionbillion 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$200-400 billionbillion
Autism Growth Comparison Chart(Source: Autism Society of America)
1,354 %:Autism1
Rates of Autism : 3 in 500 births 2
60+ cases/day/U.S.3
28.4 %:All Disabilities 1
13 %:U.S. Population4
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)
What if we could ever get on the same page?What if we could ever get on the same page?The Autism Community in the USA alone is
12-17 million strongand GROWING (not fuzzy math)
Estimated Number of Individuals with Autism in Estimated Number of Individuals with Autism in Selected Asian Nations and the U.S., 2007Selected Asian Nations and the U.S., 2007
COUNTRY
China NUMBER
2,500,000DATA SOURCEUniversity of Beijing estimate – working with Johns Hopkins to get a better number
India 2,000,000Reports from parent groups not confirmed by government (number attempted to be verified by ASA)
United States 1,200,000 Centers for Disease Control ADDME Study 2007
Indonesia 350,000Estimated by Health Minister of Indonesia
Japan 300,000Widely reported to have the highest rate of autism in the world
Philippines 250,000Estimate by the Autism Society of the Philippines – a reliable source
Vietnam 200,000Unreliable number
Thailand 180,000Estimate of the Minister of Mental Health
Why is Autism Unique?Why is Autism Unique?
• Most parents are highly energetic and active
• Well-read when it comes to medications and treatments
• Hungry for information, open to trying new treatments
• Read everything: new research, package inserts, perform MEDLINE searches, newsletters, etc.
• May view the medical community with mistrust due to initial misdiagnosis, or other negative experience
• Comfortable speaking out to help our loved ones…
Factors impacting autism today Factors impacting autism today are truly universal…are truly universal…
• Environment
• Climate Change
• Health Care Access and Reform
• Lifespan Services
• Empowerment and Enfranchisement
• Human Rights
Human Rights and ASD
• Systematically discriminated and subjected to global abuses
• Moral and Ethical Obligation• Can no longer accept that ASD is hopeless• Must demand that action be taken now• Most compelling issue of our time
A Human Rights Declaration A Human Rights Declaration for Autismfor Autism
The health care indispensable to a full and meaningful life is a fundamental right of all human beings.
In every legal culture of the world, in the several codifications of the international community’s recognition and commitment to fundamental human rights, and in the bills of rights of virtually every country essential health care has been recognized as a fundamental human right. But with Autism, there is a pervasive discrimination on an equally global scale. Proper and timely access to medical diagnosis and treatment are typically not available and where they are, they are discouraged or simply withheld. Services, virtually non existent, are typically inadequate and inappropriate when available. Regardless of ethnicity, economic status, nationality, religion or country, individuals with Autism and their loved ones are systematically discriminated against and left to fend for themselves to provide the most meager of supports and interventions. The numbers of those diagnosed with Autism are incredibly high, already of pandemic proportions, and continue to rise unabated.
When confronted by the seriousness and consequences of the condition, by the numbers of affected individuals and families, and by the scale and pervasiveness of the discrimination they suffer in the access to proper and timely health care and services, we must recognize that Autism is becoming the most important human rights health issue in the world. Indeed, undisputed facts and greater moral maturity compels the world to see in the predicament of individuals with Autism and other mental disabilities the new human rights frontier of our time.
Global InitiativesGlobal Initiatives
Global Autism Assistance Act Global Autism Assistance Act of 2008 (H. R. 5446/S.2798)of 2008 (H. R. 5446/S.2798)
A bill recently introduced by Rep. Chris Smith (R-NJ), Rep. Mike Doyle (D-PA) and Sen. Norm Coleman (R-MN) that would establish a health and education grant program related to autism spectrum disorders.
• The Administrator for the United States Agency for InternationalUnited States Agency for International DevelopmentDevelopment shall establish and administer a health and health and education grant programeducation grant program to be known as the “Global Autism Global Autism Assistance ProgramAssistance Program” to:
(1) support activities by ngo’s and other service providers focused on autism in developing countries; and
(2) establish a “teach the teachersteach the teachers” program under subsection (d) to train health and education professionals working with children with autism in developing countries.
Thank you…Thank you…
Parting Words of WisdomParting Words of Wisdom
“Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.”
“The Lorax” Dr. Seuss (1904-1991)
Thank YouThank You
Jeff Sell, Esq.Jeff Sell, Esq.Director of Chapters & MembershipAutism Society of America7910 Woodmont Ave., Suite 300Bethesda, MD 20814-3067301-657-0881 ext. 104 (office)832-731-3145 (mobile)301-657-0869 (fax)832-442-3028 (e-fax) [email protected] www.jzslaw.com
