Autism Spectrum Disorders:

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Autism Spectrum Disorders

• Putting the Puzzle Together in Florida

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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.

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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.

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What are Autism Spectrum Disorders (ASDs)?

• Aspergers Disorder
• Autistic Disorder
• Pervasive Developmental Disorder Not Otherwise
  Specified (PDD-NOS) includes atypical autism

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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
  girls

Source CDC Autism Information Center,
http//www.cdc.gov/ncbddd/autism/index.htm
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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
  School.
• 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.

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Other Conditions Sometimes Faced by Persons with
Autism

• 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
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Issues Faced by Persons with Autism

• Safety
• Communication
• Social Interaction
• Acceptance
• Diagnosis and Coverage
• Educational Opportunities
• Interpersonal Relationships
• Finances and Workforce

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Issues Faced by Caregivers of Persons with Autism

• Recognition
• Information Resources
• Support
• Coverage of Therapy Options
• Long-Term Planning
• Family Unit

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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
  time.
• 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
  affected

Source CDC Autism Information Center
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Cures for Autism

• Theories
• No confirmed cures

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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,
http//www.cdc.gov/ncbddd/autism/index.htm
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Prevalence - Florida

• Currently Unknown
• Florida is one of 11 states currently being
  monitored by the CDCs Autism and Developmental
  Disabilities Monitoring Network

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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
  disability).

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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.

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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
  2013.

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Impact to Floridas Economy

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

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Impact to Floridas Families

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

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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).

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Early Screening AAP

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

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Additional Opportunities for Early Recognition

• Health care provider
• Early childcare
• Educators
• Families, friends

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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
  medications

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Other Theories/Treatments

• Diet
• Casein
• Gluten
• Chelation
• Audiological Therapy

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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
  efficacy.
• Various medications have been utilized in an
  effort to control or lessen the manifestations of
  ASDs.
• Among medications being used or researched are
  tranquilizers, antipsychotics, Risperdol and
  recently, Namenda (memantine), used in the
  treatment of Alzheimers to alter/restore brain
  connections.

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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.

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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
  behavior.
• 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.

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RDI

• Relationship Development Intervention (RDI) is a
  program developed by Steven Gutstein that
  emphasizes Experience Sharing rather than the
  training of behavioral responses to specific
  situations.
• 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
  disorders.
• May lead to dramatic changes in flexible
  thinking, pragmatic communication, creative
  information processing and self-development.

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RDI

• 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
  (IEP).

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Insurance Coverage

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

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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.

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DIR/Floortime

• 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
  impacted.
• 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.

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DIR/Floortime

• Floortime is a component of a comprehensive DIR
  intervention program that focuses on creating
  emotionally meaningful learning interactions
  that encourage six basic developmental
  capacities.
• 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.

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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
  efficacy.
• Various medications have been utilized in an
  effort to control or lessen the manifestations of
  ASDs.
• Among medications being used or researched are
  tranquilizers, antipsychotics, Risperdol and
  recently, Namenda (memantine), used in the
  treatment of Alzheimers to alter/restore brain
  connections.

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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
  hour.
• Auditory Integration Training costs about 1,000.

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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)

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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 www.cdc.gov. (American Academy
  of Pediatrics Fact Sheet)

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Educational Options for Persons with Autism

• Public School
• Private Schools
• Home School
• Schools of Autism

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Employment for Persons with Autism Varied
Reports

• 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,
  FL)

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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)

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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

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State Agencies

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

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Celebrity Advocates/Parents

• Dan Marino
• Doug Flutie
• Jenny McCarthy
• Rodney and Holly Robinson Peete
• Five for Fighting

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Steps Florida May Consider Taking

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

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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
  resources.
• Often parents are flooded with information from
  books and the Internet expressing multiple
  options and viewpoints.

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Options Being Explored in Various States/Federal
Level

• Statewide Registry (identifying information
  removed)
• Early Screening
• Training Educators
• Insurance Coverage
• Creation of Disabilities Savings Accounts

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Additional Resources

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

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Autism Spectrum Disorders

• Putting the Puzzle Together in Florida