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Autism Spectrum Disorders:


Autism is classified as a developmental disability. ... Jenny McCarthy. Rodney and Holly Robinson Peete. Five for Fighting. Steps Florida May ... – PowerPoint PPT presentation

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Title: Autism Spectrum Disorders:

Autism Spectrum Disorders
  • Putting the Puzzle Together in Florida

What is Autism Spectrum Disorder?
  • Autism is a lifelong neurological disability
    that affects a persons ability to communicate,
    understand language play and socially interact
    with others. Autism is classified as a
    developmental disability.
  • May involve substantial core deficits in
    communication and social skills that greatly
    impact level of functioning.
  • Affected individuals may experience lack of
    emotion, trouble with basic motor skills,
    repetitive behaviors or body movement, inability
    to regulate social interaction, impaired use of
    non-verbal behavior such as facial expression or
    eye gaze, and difficulty in language skills.

What is Autism Spectrum Disorder?
  • Individuals may have atypical responses to
    sensory stimulation and to objects or events.
  • Generally, there are issues with intimacy,
    interactive and expressive communication, and
    meaningful word use.

What are Autism Spectrum Disorders (ASDs)?
  • Aspergers Disorder
  • Autistic Disorder
  • Pervasive Developmental Disorder Not Otherwise
    Specified (PDD-NOS) includes atypical autism

Who Is Affected by Autism Spectrum Disorders?
  • All racial/ethnic backgrounds
  • All socio-economic classes
  • Across the world
  • Four times more likely to occur in boys than in

Source CDC Autism Information Center,
Is Autism New?
  • Earliest recorded descriptions believed in the
    18th century
  • First identified as a specific disorder in 1943
    by child psychiatrist Dr. Leo Kanner, a child
    psychologist at Johns Hopkins University Medical
  • At about the same time, German scientist Dr. Hans
    Asperger, based on his study of 400 children,
    described another form of autism that became
    known as Asperger syndrome.
  • The criteria used to diagnose ASDs have changed
    many times.

Other Conditions Sometimes Faced by Persons with
  • Other developmental disabilites (e.g. mental
    retardation/intellectual impairment)
  • Epilepsy
  • Fragile X Syndrome Prader-Willi
  • Attention Deficit
  • Sensory Integration issues
  • Gastrointestinal disorders
  • Depression/anxiety/sleep issues

Source CDC Autism Information Center
Issues Faced by Persons with Autism
  • Safety
  • Communication
  • Social Interaction
  • Acceptance
  • Diagnosis and Coverage
  • Educational Opportunities
  • Interpersonal Relationships
  • Finances and Workforce

Issues Faced by Caregivers of Persons with Autism
  • Recognition
  • Information Resources
  • Support
  • Coverage of Therapy Options
  • Long-Term Planning
  • Family Unit

Causes of Autism
  • Generally Unknown May vary among individuals
    may have multiple factors
  • Scientists believe some genetic component
  • Among identical twins, if one child has autism,
    then the other will be affected about 75 of the
  • In non-identical twins, if one child has autism,
    then the other has it about 3 of the time.
  • Parents who have a child with an ASD have a 28
    chance of having a second child who is also

Source CDC Autism Information Center
Cures for Autism
  • Theories
  • No confirmed cures

Prevalence United States
  • Estimated at 1 in 150 (Based on CDC Autism and
    Developmental Disabilities Monitoring Network
    data released in 2007 multiple areas)
  • Rates may be higher or lower in other areas (_at_ 1
    in 300 in AL _at_ 1 in 95 in NJ)
  • If 4 million children born in the U.S. per year,
    estimated up to 560,000 individuals between the
    ages of 0 to 21 have an ASD 

Source CDC Autism Information Center,
Prevalence - Florida
  • Currently Unknown
  • Florida is one of 11 states currently being
    monitored by the CDCs Autism and Developmental
    Disabilities Monitoring Network

The Cost of Autism
  • A 2006 report by Harvard faculty (Ganz) estimates
    that it costs approximately 3.2 million to care
    for an autistic person over his lifetime.
  • The study examined direct medical costs such as
    physician and outpatients services, prescription
    medication, behavioral therapies (average cost of
    more than 29,000 per person per year), and
    direct non-medical costs, such as special
    education and child care (annual cost of
    38,000-43,000 or more depending on level of

The Cost of Autism
  • The study estimated indirect costs, based on the
    value of lost productivity, for autistic
    individuals and their parents from 39,000 to
    130,000 annually.
  • Indirect costs encompasses measures such as the
    difference in potential income between someone
    with autism and someone without and the loss of
    parental income due to reduced work hours or not
    working altogether. This would suggest that the
    annual per person cost of care, including direct
    and indirect costs, averages more than 150,000.

Impact to the National Economy
  • In 2003, the Autism Society of America described
    the then annual cost of autism on the U.S.
    Economy to be 90 billion.
  • An analysis of future cost based the current
    estimated rate of increase of 10-17 annual
    growth in the prevalence of autism, leads to
    projected annual costs of 200 to 400 billion by

Impact to Floridas Economy
  • Full impact unknown
  • Lost productivity (caregivers)
  • Loss of workforce
  • As caregivers age, responsibility may fall to the

Impact to Floridas Families
  • Potential isolation
  • Challenge in accessing resources
  • Out of pocket costs/finances
  • Insurance
  • Siblings
  • Divorce rate

Early Intervention for Cost Savings
  • Some studies suggest that costs of lifelong care
    can be reduced significantly with early diagnosis
    and intervention.
  • At least one study reports that early
    intervention can save up to 2.5 million per
    individual in costs of care over a lifetime.
    (Cambridge Center for Behavioral Analysis, 1998).

Early Screening AAP
  • Screening at 18 and 24 months (AAP-2007)
  • Various screening tools (e.g. M-CHAT)

Additional Opportunities for Early Recognition
  • Health care provider
  • Early childcare
  • Educators
  • Families, friends

Treatments for Autism
  • Must be individually tailored
  • Behavioral Therapy
  • Core Deficit /Social Skill Therapy
  • Speech therapy, occupational therapy
  • physical therapy, audiology/speech language
    pathology, psychological counseling,
    special/private schooling, prescription

Other Theories/Treatments
  • Diet
  • Casein
  • Gluten
  • Chelation
  • Audiological Therapy

Other Treatments Being Explored
  • As symptoms and comorbid conditions vary,
    treatments and therapies must be tailored to the
    particular individual with PDD/ASD to achieve
  • Various medications have been utilized in an
    effort to control or lessen the manifestations of
  • Among medications being used or researched are
    tranquilizers, antipsychotics, Risperdol and
    recently, Namenda (memantine), used in the
    treatment of Alzheimers to alter/restore brain

Applied Behavioral Analysis
  • Psychologist B.F. Skinner developed a theory
    known as Applied Behavior Analysis, or ABA, which
    seeks to alter behavior through the repetition
    and reinforcement of desired behaviors.
    Researchers have applied Skinners principles to
    therapies with autistic individuals.
  • ABA may be the most widely known therapy for
    individuals with ASDs.

Applied Behavioral Analysis
  • ABA has demonstrated efficacy in managing
    problem and aberrant behavior such as
    self-injurious, ritualistic, repetitive,
    aggressive and disruptive behavior, it does this
    through teaching alternative pro-social
  • Successful early intervention programs often
    include ABA components.
  • There is a high demand for behavior analysts. In
    Florida, behavioral analysts must meet certain
    statutory requirements.

  • Relationship Development Intervention (RDI) is a
    program developed by Steven Gutstein that
    emphasizes Experience Sharing rather than the
    training of behavioral responses to specific
  • RDI activities address core deficits of autism
    related conditions by teaching Dynamic
    Intelligence through flexibility and adaptability
    in social situations.
  • This enables increased quality of life through
    the development of meaningful relationships often
    unattainable for persons with autism spectrum
  • May lead to dramatic changes in flexible
    thinking, pragmatic communication, creative
    information processing and self-development.

  • Curriculum is comprised of six levels and 24
    stages designed to teach individuals how to build
    and internalize relationship skills essential to
    social and emotional development.
  • Uses comprehensive assessment tools, books,
    workshops, interviews, and videotaped sessions
    with RDI certified consultant feedback to help
    individuals progress through the program.
  • The Relationship Development Assessment tool can
    be used to formulate measurable social
    developmental goals in a school setting as part
    of a childs individualized education program

Insurance Coverage
  • Pre-existing condition
  • Requirement for improvement (time period)
  • Diagnosis/terminology
  • Services not included
  • Denial of coverage

Medicaid Waivers
  • Medicaid waivers address additional services not
    otherwise covered by traditional Medicaid and
    seek to avoid duplication of services.
  • 1) Family and Supported Living (FSL) Waiver
  • provides home and community based services to
    eligible children and adults with developmental
    disabilities. Capped.
  • 2) Developmental Disabilities Home and
    Community-Based Services (DD/HCBS) Waiver
    provides home and community-based supports and
    services to eligible persons with developmental
    disabilities. The HCBS Waiver offers services
    without dollar cap limits.

  • DIR/Floortime, developed by Dr. Stanley
    Greenspan, is an approach to autism and ASDs that
    is based on an assumption that the core
    developmental foundations for thinking,
    communicating and relating can be positively
  • The DIR model allows for the incorporation of
    behavioral approaches in a dynamic and
    individualized way based on the needs of the
    child. DIR stands for developmental,
    individual-difference, relationship based.

  • Floortime is a component of a comprehensive DIR
    intervention program that focuses on creating
    emotionally meaningful learning interactions
    that encourage six basic developmental
  • Other DIR program components could involve speech
    therapy, peer play, occupational therapy, and use
    in the school environment.
  • DIR is believed to help children with ASD learn
    to relate to others with warmth and intimacy,
    engage in meaningful communication with emotional
    gestures and words, and utilize high levels of
    empathy and abstract reasoning in thought.

Other Treatments Being Explored
  • As symptoms and co-occuring conditions vary,
    treatments and therapies must be tailored to the
    particular individual with PDD/ASD to achieve
  • Various medications have been utilized in an
    effort to control or lessen the manifestations of
  • Among medications being used or researched are
    tranquilizers, antipsychotics, Risperdol and
    recently, Namenda (memantine), used in the
    treatment of Alzheimers to alter/restore brain

Costs of and Payments for Treatment - Examples
  • RDI spokesperson (Rachelle K. Sheely, PhD) has
    estimated that RDI treatment with a full time
    therapist should cost about 10,000 to 20,000
    per year.
  • Private speech therapy costs about 100-200 per
  • Auditory Integration Training costs about 1,000.

In the News MMR Vaccine Thimerosal
  • A recent case (Polling) that was awarded
    compensation through the federal Vaccine Injury
    Compensation Program involved a child with a
    mitochondrial disorder or mitochondrial disease.
    This case has raised questions about what
    environmental triggers might bring on or worsen
    autism-like symptoms in children with such
    disorders. (American Academy of Pediatrics)

In the News MMR Vaccine Thimerosal
  • According to the Centers for Disease Control and
    Prevention (CDC), this was a unique case and
    does not change the immunization recommendations
    for children in whom vaccines are otherwise
    recommended.  More information is available at
    the CDC Web site (American Academy
    of Pediatrics Fact Sheet)

Educational Options for Persons with Autism
  • Public School
  • Private Schools
  • Home School
  • Schools of Autism

Employment for Persons with Autism Varied
  • Only 10 percent of affected individuals are able
    to obtain/maintain employment. Only 5 percent of
    affected individuals are able to marry or have a
    family. (Gutstein)
  • A study of work outcomes in an 8 year program of
    a work support for adults with autism and IQs
    over 60 was able to find jobs for 68, mostly
    clerical or administrative. In comparison only
    about 25 of the sample without support found
    jobs, mostly less satisfying or lower paid. Of
    the supported placements, more than 50 were
    permanent and none of the employees have been
    dismissed. (Autism. 2005).
  • Grants for businesses hiring autistic individuals
    (e.g. Able Trust to I Can Grow, Inc., Cottondale,

Federal Level and Other States -A Few Examples
  • New Jersey 2007, Governor Jon Corzine signs
    into law a 7 bill autism package
  • South Carolina passed a law requiring coverage
    for treatment for autism
  • Combating Autism Act
  • Disabilities/Financial Savings Account bills
    (Crenshaw, Casey-Hatch, Dodd)

Key Resources in Florida
  • State Agencies
  • Centers for Autism and Related Disabilities
    (FSU-grant) Developmental Disabilities Council
  • Organizations such as Autism Speaks (Cure Autism
    Now merged with Autism Speaks) Autism Society of
    America/Florida Family Network on Disabilities

State Agencies
  • DOH/CMS Early Steps/Floridas Early
    Intervention Program (IDEA Part C)
  • Agency for Person with Disabilities
  • Children and Families
  • Department of Education

Celebrity Advocates/Parents
  • Dan Marino
  • Doug Flutie
  • Jenny McCarthy
  • Rodney and Holly Robinson Peete
  • Five for Fighting

Steps Florida May Consider Taking
  • Governor Charlie Crist - Florida Task Force on
    Autism Spectrum Disorders to coordinate efforts
    and to set a proactive agenda

Statewide Website
  • As aspects of care are handled by various health
    care providers and state agencies, families do
    not have a one-stop shopping location to
    navigate the complexities of Medicaid waivers,
    medical care options, support systems, and needed
  • Often parents are flooded with information from
    books and the Internet expressing multiple
    options and viewpoints.

Options Being Explored in Various States/Federal
  • Statewide Registry (identifying information
  • Early Screening
  • Training Educators
  • Insurance Coverage
  • Creation of Disabilities Savings Accounts

Additional Resources
  • Understanding Autism Spectrum Disorders (ASDs).
    American Academy of Pediatrics (2006).
  • Centers for Disease Control Autism Information

Autism Spectrum Disorders
  • Putting the Puzzle Together in Florida
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