Autism Spectrum Disorders:

1. Autism Spectrum Disorders: Putting the Puzzle Together in Florida

2. What is Autism Spectrum Disorder? • Autism is a “lifelong neurological disability that affects a person’s 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.

3. 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.

4. What are Autism Spectrum Disorders (ASDs)? • Asperger’s Disorder • Autistic Disorder • Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS); includes atypical autism

5. 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

6. 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.

7. 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

8. Issues Faced by Persons with Autism • Safety • Communication • Social Interaction • Acceptance • Diagnosis and Coverage • Educational Opportunities • Interpersonal Relationships • Finances and Workforce

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

10. 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 2%–8% chance of having a second child who is also affected Source: CDC Autism Information Center

11. Cures for Autism • Theories • No confirmed cures

12. 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 (@ 1 in 300 in AL; @ 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

13. Prevalence - Florida • Currently Unknown • Florida is one of 11 states currently being monitored by the CDC’s Autism and Developmental Disabilities Monitoring Network

14. 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).

15. 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.]

16. 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.

17. Impact to Florida’s Economy • Full impact unknown • Lost productivity (caregivers) • Loss of workforce • As caregivers age, responsibility may fall to the State

18. Impact to Florida’s Families • Potential isolation • Challenge in accessing resources • Out of pocket costs/finances • Insurance • Siblings • Divorce rate

19. 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).

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

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

22. 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

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

24. 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 Alzheimer’s to alter/restore brain connections.

25. 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 Skinner’s principles to therapies with autistic individuals. • ABA may be the most widely known therapy for individuals with ASDs.

26. 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.

27. 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.”

28. 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 child’s individualized education program (IEP).

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

30. 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.

31. 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.”

32. 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.

33. 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 Alzheimer’s to alter/restore brain connections.

34. 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.

35. 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)

36. 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)

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

38. 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)

39. 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)

40. 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

41. State Agencies • DOH/CMS – Early Steps/Florida’s Early Intervention Program (IDEA Part C) • Agency for Person with Disabilities • Children and Families • Department of Education

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

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

44. 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.

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

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

47. Autism Spectrum Disorders: Putting the Puzzle Together in Florida