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The Autism Spectrum

In the film Best Kept Secret, Janet Mino teaches a class of six students, five of whom are on the autism spectrum. Autism spectrum disorder (ASD), commonly referred to simply as autism, is a neurological and developmental variation that affects learning, communication and social interaction. Autism can be found across all racial, ethnic and social groups and is associated with a wide range of behaviors and characteristics that may include intense focus on a specific subject; unconventional means of learning and problem-solving; a strong need for routine and consistency; repetitive movement or self-stimulation, such as rocking or humming; difficulty with social interpretation and expression; and an under- or over-sensitivity to sensory experiences like sound, light and touch. Each individual on the autism spectrum is different, with a unique set of characteristics and behaviors that may change depending on stress or anxiety levels and sensory stimulation. Individuals on the far end of the autism spectrum may be non-verbal, harm themselves or depend heavily on support from family and professionals, while other adults with autism may live and work independently. The exact cause of autism is unknown, though genetics and environmental conditions are thought to be possible factors. Prior to May 2013, diagnosticians separated the varying degrees of autism spectrum disorder into subsets that included autism disorder, Asperger's syndrome, pervasive development disorder not otherwise specified, Rett syndrome and childhood disintegrative disorder. Since these subsets were differentiated solely by behaviors, they were often difficult to determine. In an effort to provide more clarity and diagnostic precision, the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (the manual published by the American Psychiatric Association and used as the standard for classifying mental disorders), released in May 2013, eliminated these subsets and instead breaks down positions on the autism spectrum by levels (for example, autism spectrum disorder, level 1, level 2 or level 3). As of March 2013, the Centers for Disease Control and Prevention estimate that one in 50 children are identified with autism spectrum disorder, compared to about 1 in 155 in 2002 and 1 in 88 in 2012. However, this rapid increase may be more attributable to greater awareness and more frequent diagnosis than to an actual increase in the incidence rate. Diagnosing autism accurately is not easy and, according to the Diagnostic and Statistical Manual of Mental Disorders, there are more than 600 different symptom combinations that meet the minimum criteria for diagnosing autism disorder—just one of the formerly used subsets of autism spectrum disorder. The Autism Diagnostic Observation Schedule (ASOD) and the Autism Diagnostic Interview, Revised (ADI-R) are the standard assessment tools used for diagnosis, but many other screening tests exist. Administering assessments that are accurate and comprehensive is a difficult task, as traits associated with autism exist on a continuum and may be observed among those not clinically diagnosed with a related disorder.

Sources: » Armstrong, Thomas. The Power of Neurodiversity: Unleashing the Advantages of Your Differently Wired Brain. Cambridge: Da Capo Lifelong, 2011. » The Autism Education Network. "Diagnosing Autism." » Autism Research Institute. "DSM-V: What Changes May Mean." » Autism Society. » Autistic Self Advocacy Network. » Carey, Benedict. "Diagnoses of Autism on the Rise, Report Says." The New York Times, March 29, 2012. » Centers for Disease Control and Prevention. » Gever, John. "Amygdala Enlarged in Young Autistic Children." MedPage Today, May 4, 2009. » Grandin, Temple. "The World Needs People with Asperger’s Syndrome" The DANA Foundation, October 1, 2002. » Grandin, Temple and Richard Panek. The Autistic Brain: Thinking Across the Spectrum. New York: Houghton Mifflin Harcourt, 2013. » Hamilton, Jon. "What’s Different About the Brains of People with Autism?" NPR, June 4, 2012. » Jaarsma, Pier and Stellan Welin. "Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement." Health Care Analysis, March 2012. » Autistic Self Advocacy Network. » National Institute of Neurological Disorders and Stroke. » PBS. History of Autism Blame. » PBS. Refrigerator Mothers. What Is Autism? » PBS. This Emotional Life. What Is Autism? » Salahi, Lara. "10 Myths About Autism." ABC News, October 23, 2008. » Science Daily. "In Autism, Age at Diagnosis Depends On Specific Symptoms."

Newark and John F. Kennedy School

John F. Kennedy School, featured in Best Kept Secret, is located in Newark, New Jersey, a city with a population of 277,727, more than 25 percent of whom live below the poverty line. The state of New Jersey has one of the highest rates of autism in the nation. John F. Kennedy School is a middle-secondary special education school that serves students throughout the district of Newark from 10 to 21 years of age. The school has two separate programs for students based on their diagnoses: Autistic and Multiple Disabilities with Moderate Cognitive Involvement. Janet Mino, the teacher featured in Best Kept Secret, is part of the school’s transition team, which, in cooperation with students and parents, assesses the needs and skill-development required for students as they transition from school to work and independent living. The team includes two transition teachers, four job coaches, a guidance counselor, a school social worker and a Child Study Team case manager. Transition teams are required by the federal government to prepare students who are receiving special education for life after graduation.

Sources: » Augenstein, Seth. "N.J. Still Ranks High in Autism Rate, Report Says." The Star-Ledger, March 29, 2012. » Autism Speaks. "Employment and Other Options." » Goldberg, Dan."Autism Survey Finds 1 in 50 American Kids Are on the Spectrum." The Star-Ledger, March 21, 2013. » Newark Public Schools. "John F. Kennedy School." » Newark Public Schools. "State and County Quick Facts: Newark, New Jersey."

"Falling Off the Cliff"

Special education programs in the United States became mandatory in 1975 when the Education for All Handicapped Children Act (EHA) was passed by Congress to ensure equal rights and access for disabled students in the public education system. Additional rights and protections were later added and the EHA was renamed the Individuals with Disabilities Education Act (IDEA). IDEA entitles every special needs student to free public education, appropriate to his or her needs, and sends federal funding to states and local school systems to support special education services. The federal government now requires every U.S. state to provide special education through 18 years of age, though most states extend this requirement to include students up to age 21. At 22, students age out of the public school system and the "entitlement laws" that provide services such as education, transportation, subsidized housing and vocational and life skills training cease to apply, leaving family, friends and teachers responsible for seeking out support programs. Parents and teachers refer to this as "falling off the cliff," because of the scarcity of continuing adult education programs and accommodations. To prepare students and families for this life change, the federal law requires schools to begin the process of developing a transition plan for an individual with autism when that person reaches age 16, though the Organization for Autism Research recommends that planning for the transition begin at least as early as 14. Transition planning includes assessing, developing and documenting the skills, goals and challenges for each individual as he or she transitions out of the school system. Upon graduation, individuals with autism are assigned caseworkers from the state. Every state also has a department of vocational rehabilitation that is associated with a nationwide federal program designed to help individuals with disabilities find employment. According to the Disability Network, experts estimate that at least 90 percent of adults with autism end up living with their parents or in institutions after they finish school. A 2012 study from Pediatrics, the official journal of the American Academy of Pediatrics, found that within the first six years of graduation, about one third of young adults with autism had continued on to college, and about half held paying jobs. Six percent of adults with autism work full-time, and those who come from low-income backgrounds and/or have severe disabilities face a much higher risk of not continuing education or finding employment after high school. In 2012, the annual public and private cost of autism reached $126 billion, more than triple what it was in 2006, and a majority of those costs were in education and adult care. Studies show that individuals with autism who do not receive continued assistance into adulthood are much more likely to regress in their social and verbal skills, while early intervention can lower lifetime costs of care for an individual with autism by nearly two thirds. According to the organization Advancing Futures for Adults with Autism (AFAA), public and private costs of autism will continue to rise rapidly if support systems for adults with autism are not made more accessible and comprehensive.

Sources: » Allday, Erin. "Experts Brace for Wave of Autistic Adults." San Francisco Chronicle, October 4, 2012. » Armstrong, Thomas. The Power of Neurodiversity: Unleashing the Advantages of Your Differently Wired Brain. Cambridge: Da Capo Lifelong, 2011. » Advancing Futures for Adults with Autism. "Overview." » Autism Society. "Individualized Education Plan (IEP)." » Autism Speaks. "New Research Finds Annual Cost of Autism Has More Than Tripled to $126 Billion in the U.S. and Reached £34 Billion in the U.K." » Education Week. "Special Education." » Hensley, Scott. "Jobs and College Pose Big Challenges for Young People with Autism." NPR. May 14, 2012. » James, Susan Donaldson. "Children With Autism ‘Fall Off the Cliff’ After Graduation." ABC News, April 30, 2013. » McCarron, Bev. "Searching for Services for Adult Autistic Children." New Jersey Spotlight, October 29, 2010. » Organization for Autism Research. "A Guide for Transition to Adulthood." New Jersey Spotlight, October 29, 2010. » PBS Need to Know. "A Generation with Autism, Graduating into the Unknown." » Shattuck, Paul T., Sarah Carter Narendorf, Benjamin Cooper, Paul R. Sterzing, Mary Wagner, and Julie Lounds Taylor. "Postsecondary Education and Employment Among Youth with an Autism Spectrum Disorder." Pediatrics, May 14, 2012. » "Unfinished Business: Making Employment of People with Disabilities a National Priority." United States Senate. Committee on Health, Education, Labor and Pensions. July 2012. » Walsh-Sarnecki, Peggy. "Lack of State Services for Aging Autistic Makes Adulthood like 'Falling Off a Cliff.'" Detroit Free Press, April 25, 2012. » "Workers with a Disability Less Likely to be Employed, More Likely to Hold Jobs with Lower Earnings, Census Bureau Reports." United States Census Bureau. March 14, 2013.

Services and Programs for Adults with Autism

In the 1980s and 1990s, the number of children diagnosed with autism increased rapidly, and approximately half a million of those children are expected to reach adulthood over the next decade. This drastic growth, in conjunction with nationwide budget cuts, means that the need for support programs far exceeds available resources. Support services for adults with autism vary by state and may include health and rehabilitation services, residential programs, employment training, day programs, recreational activities and home care. The majority of long-term government services fall under the following programs: Social Security Disability Insurance, Supplemental Security Income, Medicaid and Medicare. However, to qualify for these programs, most adults must be able to prove that their condition is such that they are unable to work, and the payments are often not enough to cover day programs, job coaches or other support programs that could otherwise help prepare individuals for employment and/or independence. In New Jersey, for example, state funds provide an average of $22,000 per high school graduate, but residential and support programs can cost anywhere between $35,000 and $90,000 per year. Eligibility for services varies from state to state, and families/individuals must reapply and go to the end of the waiting list if they cross state lines. Laws such as the Americans with Disabilities Act (ADA) and IDEA are put in place to ensure equal access to support programs, but cannot guarantee that individuals will be provided with adequate services. Adults can qualify for Medicaid community waivers, which provide additional services designed to keep them out of institutions and in the community, but these waivers can have a waitlist of more than 8,000 names, and some individuals face a wait time as long as 10 years. While those with significant intellectual disabilities often have a strong chance of receiving state and federal support and individuals with high functioning autism are more likely to live independently and continue on to college and careers, those who fall in the middle of the autism spectrum may face additional challenges. They may have difficulty continuing on to postsecondary education or obtaining jobs without support (such as that provided by job coaches), but also have a harder time proving that their needs are great enough to qualify for major supportive care. Many families and caregivers must work full-time in order to afford services, but finding transportation and programs with work-friendly hours can be challenging. According to the AFAA, transportation is a significant limiting factor for individuals with autism working toward employment and integration into the community, and one of the greatest financial burdens for families after housing. Additionally, many day programs operate from 10:00 a.m. to 1:00 p.m., a timeframe that is unlikely to coordinate with the schedules of working parents. For public and private programs, financial constraints, capacity limitations and low staff numbers present major obstacles to meeting demand. Since autism has a wide range of characteristics and each individual has a unique set of needs and abilities, care and support services often need to be individualized to be effective. For example, higher functioning adults with autism like Erik, featured in Best Kept Secret, may still need job coaches throughout their employment, but often the staff or funding needed to provide this support is lacking. Some parents, family members and teachers, discouraged by the lack of available and comprehensive support programs, start their own programs or pool their resources to create family coalitions, though this method is expensive. Such coalitions may take years to develop, especially when participating parents are working full- or even part-time. Since the filming of Best Kept Secret, Janet Mino has applied for a grant to open the Valentine Center, a center for young adults with autism that would provide transportation, therapy and activities during hours compatible with the schedules of working parents. In July 2013, New Jersey senator Robert Menendez announced the AGE-IN Act, legislation to address the needs of young adults with autism who are "aging out" of public education and other support services. The new legislation would fund research into options for improving transition programs, including continued education, housing, healthcare, transportation and community integration.

Sources: » Advancing Futures for Adults with Autism. "2009 Think Tank Report." » Allday, Erin. "Experts Brace for Wave of Autistic Adults." San Francisco Chronicle, October 4, 2012. » Autism Society. "The Autism Society’s 2013 Advocacy Agenda." » Autism Speaks. "Adults with Autism: What Services and Programs are Available at Twenty-Two?" » Burke, Cassie Walker. "When Autistic Children Are Children No More." Chicago Magazine, March 2013. » Davis, Linda H. "Still Overlooking Autistic Adults." The Washington Post, April 4, 2009. » Goehner, Amy Lennard. "A Generation of Autism, Coming of Age." The New York Times, April 14, 2011. » James, Susan Donaldson. "Children With Autism ‘Fall Off the Cliff’ After Graduation." ABC News, April 30, 2013. » McCarron, Bev. "Searching for Services for Adult Autistic Children." New Jersey Spotlight, October 29, 2010. » "Life Journey Through Autism: A Guide for Transition to Adulthood." 2006. » PBS Need to Know. "Adult Autism." » PBS Need to Know. "A Generation with Autism, Graduating into the Unknown." » Quartuccio, Alana."Senator Menendez Takes Action for Adults with Autism." Paramus Patch, July 16, 2013. » "Unfinished Business: Making Employment of People with Disabilities a National Priority." United States Senate. Committee on Health, Education, Labor and Pensions. July 2012. » Walsh-Sarnecki, Peggy. "Lack of State Services for Aging Autistic Makes Adulthood like 'Falling Off a Cliff.'" Detroit Free Press, April 25, 2012.

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The Autism Spectrum

In the film Best Kept Secret, Janet Mino teaches a class of six students, five of whom are on the autism spectrum. Autism spectrum disorder (ASD), commonly referred to simply as autism, is a neurological and developmental variation that affects learning, communication and social interaction. Autism can be found across all racial, ethnic and social groups and is associated with a wide range of behaviors and characteristics that may include intense focus on a specific subject; unconventional means of learning and problem-solving; a strong need for routine and consistency; repetitive movement or self-stimulation, such as rocking or humming; difficulty with social interpretation and expression; and an under- or over-sensitivity to sensory experiences like sound, light and touch. Each individual on the autism spectrum is different, with a unique set of characteristics and behaviors that may change depending on stress or anxiety levels and sensory stimulation. Individuals on the far end of the autism spectrum may be non-verbal, harm themselves or depend heavily on support from family and professionals, while other adults with autism may live and work independently. The exact cause of autism is unknown, though genetics and environmental conditions are thought to be possible factors. Prior to May 2013, diagnosticians separated the varying degrees of autism spectrum disorder into subsets that included autism disorder, Asperger's syndrome, pervasive development disorder not otherwise specified, Rett syndrome and childhood disintegrative disorder. Since these subsets were differentiated solely by behaviors, they were often difficult to determine. In an effort to provide more clarity and diagnostic precision, the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (the manual published by the American Psychiatric Association and used as the standard for classifying mental disorders), released in May 2013, eliminated these subsets and instead breaks down positions on the autism spectrum by levels (for example, autism spectrum disorder, level 1, level 2 or level 3). As of March 2013, the Centers for Disease Control and Prevention estimate that one in 50 children are identified with autism spectrum disorder, compared to about 1 in 155 in 2002 and 1 in 88 in 2012. However, this rapid increase may be more attributable to greater awareness and more frequent diagnosis than to an actual increase in the incidence rate. Diagnosing autism accurately is not easy and, according to the Diagnostic and Statistical Manual of Mental Disorders, there are more than 600 different symptom combinations that meet the minimum criteria for diagnosing autism disorder—just one of the formerly used subsets of autism spectrum disorder. The Autism Diagnostic Observation Schedule (ASOD) and the Autism Diagnostic Interview, Revised (ADI-R) are the standard assessment tools used for diagnosis, but many other screening tests exist. Administering assessments that are accurate and comprehensive is a difficult task, as traits associated with autism exist on a continuum and may be observed among those not clinically diagnosed with a related disorder.

Sources: » Armstrong, Thomas. The Power of Neurodiversity: Unleashing the Advantages of Your Differently Wired Brain. Cambridge: Da Capo Lifelong, 2011. » The Autism Education Network. "Diagnosing Autism." » Autism Research Institute. "DSM-V: What Changes May Mean." » Autism Society. » Autistic Self Advocacy Network. » Carey, Benedict. "Diagnoses of Autism on the Rise, Report Says." The New York Times, March 29, 2012. » Centers for Disease Control and Prevention. » Gever, John. "Amygdala Enlarged in Young Autistic Children." MedPage Today, May 4, 2009. » Grandin, Temple. "The World Needs People with Asperger’s Syndrome" The DANA Foundation, October 1, 2002. » Grandin, Temple and Richard Panek. The Autistic Brain: Thinking Across the Spectrum. New York: Houghton Mifflin Harcourt, 2013. » Hamilton, Jon. "What’s Different About the Brains of People with Autism?" NPR, June 4, 2012. » Jaarsma, Pier and Stellan Welin. "Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement." Health Care Analysis, March 2012. » Autistic Self Advocacy Network. » National Institute of Neurological Disorders and Stroke. » PBS. History of Autism Blame. » PBS. Refrigerator Mothers. What Is Autism? » PBS. This Emotional Life. What Is Autism? » Salahi, Lara. "10 Myths About Autism." ABC News, October 23, 2008. » Science Daily. "In Autism, Age at Diagnosis Depends On Specific Symptoms."

Newark and John F. Kennedy School

John F. Kennedy School, featured in Best Kept Secret, is located in Newark, New Jersey, a city with a population of 277,727, more than 25 percent of whom live below the poverty line. The state of New Jersey has one of the highest rates of autism in the nation. John F. Kennedy School is a middle-secondary special education school that serves students throughout the district of Newark from 10 to 21 years of age. The school has two separate programs for students based on their diagnoses: Autistic and Multiple Disabilities with Moderate Cognitive Involvement. Janet Mino, the teacher featured in Best Kept Secret, is part of the school’s transition team, which, in cooperation with students and parents, assesses the needs and skill-development required for students as they transition from school to work and independent living. The team includes two transition teachers, four job coaches, a guidance counselor, a school social worker and a Child Study Team case manager. Transition teams are required by the federal government to prepare students who are receiving special education for life after graduation.

Sources: » Augenstein, Seth. "N.J. Still Ranks High in Autism Rate, Report Says." The Star-Ledger, March 29, 2012. » Autism Speaks. "Employment and Other Options." » Goldberg, Dan."Autism Survey Finds 1 in 50 American Kids Are on the Spectrum." The Star-Ledger, March 21, 2013. » Newark Public Schools. "John F. Kennedy School." » Newark Public Schools. "State and County Quick Facts: Newark, New Jersey."

"Falling Off the Cliff"

Special education programs in the United States became mandatory in 1975 when the Education for All Handicapped Children Act (EHA) was passed by Congress to ensure equal rights and access for disabled students in the public education system. Additional rights and protections were later added and the EHA was renamed the Individuals with Disabilities Education Act (IDEA). IDEA entitles every special needs student to free public education, appropriate to his or her needs, and sends federal funding to states and local school systems to support special education services. The federal government now requires every U.S. state to provide special education through 18 years of age, though most states extend this requirement to include students up to age 21. At 22, students age out of the public school system and the "entitlement laws" that provide services such as education, transportation, subsidized housing and vocational and life skills training cease to apply, leaving family, friends and teachers responsible for seeking out support programs. Parents and teachers refer to this as "falling off the cliff," because of the scarcity of continuing adult education programs and accommodations. To prepare students and families for this life change, the federal law requires schools to begin the process of developing a transition plan for an individual with autism when that person reaches age 16, though the Organization for Autism Research recommends that planning for the transition begin at least as early as 14. Transition planning includes assessing, developing and documenting the skills, goals and challenges for each individual as he or she transitions out of the school system. Upon graduation, individuals with autism are assigned caseworkers from the state. Every state also has a department of vocational rehabilitation that is associated with a nationwide federal program designed to help individuals with disabilities find employment. According to the Disability Network, experts estimate that at least 90 percent of adults with autism end up living with their parents or in institutions after they finish school. A 2012 study from Pediatrics, the official journal of the American Academy of Pediatrics, found that within the first six years of graduation, about one third of young adults with autism had continued on to college, and about half held paying jobs. Six percent of adults with autism work full-time, and those who come from low-income backgrounds and/or have severe disabilities face a much higher risk of not continuing education or finding employment after high school. In 2012, the annual public and private cost of autism reached $126 billion, more than triple what it was in 2006, and a majority of those costs were in education and adult care. Studies show that individuals with autism who do not receive continued assistance into adulthood are much more likely to regress in their social and verbal skills, while early intervention can lower lifetime costs of care for an individual with autism by nearly two thirds. According to the organization Advancing Futures for Adults with Autism (AFAA), public and private costs of autism will continue to rise rapidly if support systems for adults with autism are not made more accessible and comprehensive.

Sources: » Allday, Erin. "Experts Brace for Wave of Autistic Adults." San Francisco Chronicle, October 4, 2012. » Armstrong, Thomas. The Power of Neurodiversity: Unleashing the Advantages of Your Differently Wired Brain. Cambridge: Da Capo Lifelong, 2011. » Advancing Futures for Adults with Autism. "Overview." » Autism Society. "Individualized Education Plan (IEP)." » Autism Speaks. "New Research Finds Annual Cost of Autism Has More Than Tripled to $126 Billion in the U.S. and Reached £34 Billion in the U.K." » Education Week. "Special Education." » Hensley, Scott. "Jobs and College Pose Big Challenges for Young People with Autism." NPR. May 14, 2012. » James, Susan Donaldson. "Children With Autism ‘Fall Off the Cliff’ After Graduation." ABC News, April 30, 2013. » McCarron, Bev. "Searching for Services for Adult Autistic Children." New Jersey Spotlight, October 29, 2010. » Organization for Autism Research. "A Guide for Transition to Adulthood." New Jersey Spotlight, October 29, 2010. » PBS Need to Know. "A Generation with Autism, Graduating into the Unknown." » Shattuck, Paul T., Sarah Carter Narendorf, Benjamin Cooper, Paul R. Sterzing, Mary Wagner, and Julie Lounds Taylor. "Postsecondary Education and Employment Among Youth with an Autism Spectrum Disorder." Pediatrics, May 14, 2012. » "Unfinished Business: Making Employment of People with Disabilities a National Priority." United States Senate. Committee on Health, Education, Labor and Pensions. July 2012. » Walsh-Sarnecki, Peggy. "Lack of State Services for Aging Autistic Makes Adulthood like 'Falling Off a Cliff.'" Detroit Free Press, April 25, 2012. » "Workers with a Disability Less Likely to be Employed, More Likely to Hold Jobs with Lower Earnings, Census Bureau Reports." United States Census Bureau. March 14, 2013.

Services and Programs for Adults with Autism

In the 1980s and 1990s, the number of children diagnosed with autism increased rapidly, and approximately half a million of those children are expected to reach adulthood over the next decade. This drastic growth, in conjunction with nationwide budget cuts, means that the need for support programs far exceeds available resources. Support services for adults with autism vary by state and may include health and rehabilitation services, residential programs, employment training, day programs, recreational activities and home care. The majority of long-term government services fall under the following programs: Social Security Disability Insurance, Supplemental Security Income, Medicaid and Medicare. However, to qualify for these programs, most adults must be able to prove that their condition is such that they are unable to work, and the payments are often not enough to cover day programs, job coaches or other support programs that could otherwise help prepare individuals for employment and/or independence. In New Jersey, for example, state funds provide an average of $22,000 per high school graduate, but residential and support programs can cost anywhere between $35,000 and $90,000 per year. Eligibility for services varies from state to state, and families/individuals must reapply and go to the end of the waiting list if they cross state lines. Laws such as the Americans with Disabilities Act (ADA) and IDEA are put in place to ensure equal access to support programs, but cannot guarantee that individuals will be provided with adequate services. Adults can qualify for Medicaid community waivers, which provide additional services designed to keep them out of institutions and in the community, but these waivers can have a waitlist of more than 8,000 names, and some individuals face a wait time as long as 10 years. While those with significant intellectual disabilities often have a strong chance of receiving state and federal support and individuals with high functioning autism are more likely to live independently and continue on to college and careers, those who fall in the middle of the autism spectrum may face additional challenges. They may have difficulty continuing on to postsecondary education or obtaining jobs without support (such as that provided by job coaches), but also have a harder time proving that their needs are great enough to qualify for major supportive care. Many families and caregivers must work full-time in order to afford services, but finding transportation and programs with work-friendly hours can be challenging. According to the AFAA, transportation is a significant limiting factor for individuals with autism working toward employment and integration into the community, and one of the greatest financial burdens for families after housing. Additionally, many day programs operate from 10:00 a.m. to 1:00 p.m., a timeframe that is unlikely to coordinate with the schedules of working parents. For public and private programs, financial constraints, capacity limitations and low staff numbers present major obstacles to meeting demand. Since autism has a wide range of characteristics and each individual has a unique set of needs and abilities, care and support services often need to be individualized to be effective. For example, higher functioning adults with autism like Erik, featured in Best Kept Secret, may still need job coaches throughout their employment, but often the staff or funding needed to provide this support is lacking. Some parents, family members and teachers, discouraged by the lack of available and comprehensive support programs, start their own programs or pool their resources to create family coalitions, though this method is expensive. Such coalitions may take years to develop, especially when participating parents are working full- or even part-time. Since the filming of Best Kept Secret, Janet Mino has applied for a grant to open the Valentine Center, a center for young adults with autism that would provide transportation, therapy and activities during hours compatible with the schedules of working parents. In July 2013, New Jersey senator Robert Menendez announced the AGE-IN Act, legislation to address the needs of young adults with autism who are "aging out" of public education and other support services. The new legislation would fund research into options for improving transition programs, including continued education, housing, healthcare, transportation and community integration.

Sources: » Advancing Futures for Adults with Autism. "2009 Think Tank Report." » Allday, Erin. "Experts Brace for Wave of Autistic Adults." San Francisco Chronicle, October 4, 2012. » Autism Society. "The Autism Society’s 2013 Advocacy Agenda." » Autism Speaks. "Adults with Autism: What Services and Programs are Available at Twenty-Two?" » Burke, Cassie Walker. "When Autistic Children Are Children No More." Chicago Magazine, March 2013. » Davis, Linda H. "Still Overlooking Autistic Adults." The Washington Post, April 4, 2009. » Goehner, Amy Lennard. "A Generation of Autism, Coming of Age." The New York Times, April 14, 2011. » James, Susan Donaldson. "Children With Autism ‘Fall Off the Cliff’ After Graduation." ABC News, April 30, 2013. » McCarron, Bev. "Searching for Services for Adult Autistic Children." New Jersey Spotlight, October 29, 2010. » "Life Journey Through Autism: A Guide for Transition to Adulthood." 2006. » PBS Need to Know. "Adult Autism." » PBS Need to Know. "A Generation with Autism, Graduating into the Unknown." » Quartuccio, Alana."Senator Menendez Takes Action for Adults with Autism." Paramus Patch, July 16, 2013. » "Unfinished Business: Making Employment of People with Disabilities a National Priority." United States Senate. Committee on Health, Education, Labor and Pensions. July 2012. » Walsh-Sarnecki, Peggy. "Lack of State Services for Aging Autistic Makes Adulthood like 'Falling Off a Cliff.'" Detroit Free Press, April 25, 2012.

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The Autism Spectrum

In the film Best Kept Secret, Janet Mino teaches a class of six students, five of whom are on the autism spectrum. Autism spectrum disorder (ASD), commonly referred to simply as autism, is a neurological and developmental variation that affects learning, communication and social interaction. Autism can be found across all racial, ethnic and social groups and is associated with a wide range of behaviors and characteristics that may include intense focus on a specific subject; unconventional means of learning and problem-solving; a strong need for routine and consistency; repetitive movement or self-stimulation, such as rocking or humming; difficulty with social interpretation and expression; and an under- or over-sensitivity to sensory experiences like sound, light and touch. Each individual on the autism spectrum is different, with a unique set of characteristics and behaviors that may change depending on stress or anxiety levels and sensory stimulation. Individuals on the far end of the autism spectrum may be non-verbal, harm themselves or depend heavily on support from family and professionals, while other adults with autism may live and work independently. The exact cause of autism is unknown, though genetics and environmental conditions are thought to be possible factors. Prior to May 2013, diagnosticians separated the varying degrees of autism spectrum disorder into subsets that included autism disorder, Asperger's syndrome, pervasive development disorder not otherwise specified, Rett syndrome and childhood disintegrative disorder. Since these subsets were differentiated solely by behaviors, they were often difficult to determine. In an effort to provide more clarity and diagnostic precision, the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (the manual published by the American Psychiatric Association and used as the standard for classifying mental disorders), released in May 2013, eliminated these subsets and instead breaks down positions on the autism spectrum by levels (for example, autism spectrum disorder, level 1, level 2 or level 3). As of March 2013, the Centers for Disease Control and Prevention estimate that one in 50 children are identified with autism spectrum disorder, compared to about 1 in 155 in 2002 and 1 in 88 in 2012. However, this rapid increase may be more attributable to greater awareness and more frequent diagnosis than to an actual increase in the incidence rate. Diagnosing autism accurately is not easy and, according to the Diagnostic and Statistical Manual of Mental Disorders, there are more than 600 different symptom combinations that meet the minimum criteria for diagnosing autism disorder—just one of the formerly used subsets of autism spectrum disorder. The Autism Diagnostic Observation Schedule (ASOD) and the Autism Diagnostic Interview, Revised (ADI-R) are the standard assessment tools used for diagnosis, but many other screening tests exist. Administering assessments that are accurate and comprehensive is a difficult task, as traits associated with autism exist on a continuum and may be observed among those not clinically diagnosed with a related disorder.

Sources: » Armstrong, Thomas. The Power of Neurodiversity: Unleashing the Advantages of Your Differently Wired Brain. Cambridge: Da Capo Lifelong, 2011. » The Autism Education Network. "Diagnosing Autism." » Autism Research Institute. "DSM-V: What Changes May Mean." » Autism Society. » Autistic Self Advocacy Network. » Carey, Benedict. "Diagnoses of Autism on the Rise, Report Says." The New York Times, March 29, 2012. » Centers for Disease Control and Prevention. » Gever, John. "Amygdala Enlarged in Young Autistic Children." MedPage Today, May 4, 2009. » Grandin, Temple. "The World Needs People with Asperger’s Syndrome" The DANA Foundation, October 1, 2002. » Grandin, Temple and Richard Panek. The Autistic Brain: Thinking Across the Spectrum. New York: Houghton Mifflin Harcourt, 2013. » Hamilton, Jon. "What’s Different About the Brains of People with Autism?" NPR, June 4, 2012. » Jaarsma, Pier and Stellan Welin. "Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement." Health Care Analysis, March 2012. » Autistic Self Advocacy Network. » National Institute of Neurological Disorders and Stroke. » PBS. History of Autism Blame. » PBS. Refrigerator Mothers. What Is Autism? » PBS. This Emotional Life. What Is Autism? » Salahi, Lara. "10 Myths About Autism." ABC News, October 23, 2008. » Science Daily. "In Autism, Age at Diagnosis Depends On Specific Symptoms."

Newark and John F. Kennedy School

John F. Kennedy School, featured in Best Kept Secret, is located in Newark, New Jersey, a city with a population of 277,727, more than 25 percent of whom live below the poverty line. The state of New Jersey has one of the highest rates of autism in the nation. John F. Kennedy School is a middle-secondary special education school that serves students throughout the district of Newark from 10 to 21 years of age. The school has two separate programs for students based on their diagnoses: Autistic and Multiple Disabilities with Moderate Cognitive Involvement. Janet Mino, the teacher featured in Best Kept Secret, is part of the school’s transition team, which, in cooperation with students and parents, assesses the needs and skill-development required for students as they transition from school to work and independent living. The team includes two transition teachers, four job coaches, a guidance counselor, a school social worker and a Child Study Team case manager. Transition teams are required by the federal government to prepare students who are receiving special education for life after graduation.

Sources: » Augenstein, Seth. "N.J. Still Ranks High in Autism Rate, Report Says." The Star-Ledger, March 29, 2012. » Autism Speaks. "Employment and Other Options." » Goldberg, Dan."Autism Survey Finds 1 in 50 American Kids Are on the Spectrum." The Star-Ledger, March 21, 2013. » Newark Public Schools. "John F. Kennedy School." » Newark Public Schools. "State and County Quick Facts: Newark, New Jersey."

"Falling Off the Cliff"

Special education programs in the United States became mandatory in 1975 when the Education for All Handicapped Children Act (EHA) was passed by Congress to ensure equal rights and access for disabled students in the public education system. Additional rights and protections were later added and the EHA was renamed the Individuals with Disabilities Education Act (IDEA). IDEA entitles every special needs student to free public education, appropriate to his or her needs, and sends federal funding to states and local school systems to support special education services. The federal government now requires every U.S. state to provide special education through 18 years of age, though most states extend this requirement to include students up to age 21. At 22, students age out of the public school system and the "entitlement laws" that provide services such as education, transportation, subsidized housing and vocational and life skills training cease to apply, leaving family, friends and teachers responsible for seeking out support programs. Parents and teachers refer to this as "falling off the cliff," because of the scarcity of continuing adult education programs and accommodations. To prepare students and families for this life change, the federal law requires schools to begin the process of developing a transition plan for an individual with autism when that person reaches age 16, though the Organization for Autism Research recommends that planning for the transition begin at least as early as 14. Transition planning includes assessing, developing and documenting the skills, goals and challenges for each individual as he or she transitions out of the school system. Upon graduation, individuals with autism are assigned caseworkers from the state. Every state also has a department of vocational rehabilitation that is associated with a nationwide federal program designed to help individuals with disabilities find employment. According to the Disability Network, experts estimate that at least 90 percent of adults with autism end up living with their parents or in institutions after they finish school. A 2012 study from Pediatrics, the official journal of the American Academy of Pediatrics, found that within the first six years of graduation, about one third of young adults with autism had continued on to college, and about half held paying jobs. Six percent of adults with autism work full-time, and those who come from low-income backgrounds and/or have severe disabilities face a much higher risk of not continuing education or finding employment after high school. In 2012, the annual public and private cost of autism reached $126 billion, more than triple what it was in 2006, and a majority of those costs were in education and adult care. Studies show that individuals with autism who do not receive continued assistance into adulthood are much more likely to regress in their social and verbal skills, while early intervention can lower lifetime costs of care for an individual with autism by nearly two thirds. According to the organization Advancing Futures for Adults with Autism (AFAA), public and private costs of autism will continue to rise rapidly if support systems for adults with autism are not made more accessible and comprehensive.

Sources: » Allday, Erin. "Experts Brace for Wave of Autistic Adults." San Francisco Chronicle, October 4, 2012. » Armstrong, Thomas. The Power of Neurodiversity: Unleashing the Advantages of Your Differently Wired Brain. Cambridge: Da Capo Lifelong, 2011. » Advancing Futures for Adults with Autism. "Overview." » Autism Society. "Individualized Education Plan (IEP)." » Autism Speaks. "New Research Finds Annual Cost of Autism Has More Than Tripled to $126 Billion in the U.S. and Reached £34 Billion in the U.K." » Education Week. "Special Education." » Hensley, Scott. "Jobs and College Pose Big Challenges for Young People with Autism." NPR. May 14, 2012. » James, Susan Donaldson. "Children With Autism ‘Fall Off the Cliff’ After Graduation." ABC News, April 30, 2013. » McCarron, Bev. "Searching for Services for Adult Autistic Children." New Jersey Spotlight, October 29, 2010. » Organization for Autism Research. "A Guide for Transition to Adulthood." New Jersey Spotlight, October 29, 2010. » PBS Need to Know. "A Generation with Autism, Graduating into the Unknown." » Shattuck, Paul T., Sarah Carter Narendorf, Benjamin Cooper, Paul R. Sterzing, Mary Wagner, and Julie Lounds Taylor. "Postsecondary Education and Employment Among Youth with an Autism Spectrum Disorder." Pediatrics, May 14, 2012. » "Unfinished Business: Making Employment of People with Disabilities a National Priority." United States Senate. Committee on Health, Education, Labor and Pensions. July 2012. » Walsh-Sarnecki, Peggy. "Lack of State Services for Aging Autistic Makes Adulthood like 'Falling Off a Cliff.'" Detroit Free Press, April 25, 2012. » "Workers with a Disability Less Likely to be Employed, More Likely to Hold Jobs with Lower Earnings, Census Bureau Reports." United States Census Bureau. March 14, 2013.

Services and Programs for Adults with Autism

In the 1980s and 1990s, the number of children diagnosed with autism increased rapidly, and approximately half a million of those children are expected to reach adulthood over the next decade. This drastic growth, in conjunction with nationwide budget cuts, means that the need for support programs far exceeds available resources. Support services for adults with autism vary by state and may include health and rehabilitation services, residential programs, employment training, day programs, recreational activities and home care. The majority of long-term government services fall under the following programs: Social Security Disability Insurance, Supplemental Security Income, Medicaid and Medicare. However, to qualify for these programs, most adults must be able to prove that their condition is such that they are unable to work, and the payments are often not enough to cover day programs, job coaches or other support programs that could otherwise help prepare individuals for employment and/or independence. In New Jersey, for example, state funds provide an average of $22,000 per high school graduate, but residential and support programs can cost anywhere between $35,000 and $90,000 per year. Eligibility for services varies from state to state, and families/individuals must reapply and go to the end of the waiting list if they cross state lines. Laws such as the Americans with Disabilities Act (ADA) and IDEA are put in place to ensure equal access to support programs, but cannot guarantee that individuals will be provided with adequate services. Adults can qualify for Medicaid community waivers, which provide additional services designed to keep them out of institutions and in the community, but these waivers can have a waitlist of more than 8,000 names, and some individuals face a wait time as long as 10 years. While those with significant intellectual disabilities often have a strong chance of receiving state and federal support and individuals with high functioning autism are more likely to live independently and continue on to college and careers, those who fall in the middle of the autism spectrum may face additional challenges. They may have difficulty continuing on to postsecondary education or obtaining jobs without support (such as that provided by job coaches), but also have a harder time proving that their needs are great enough to qualify for major supportive care. Many families and caregivers must work full-time in order to afford services, but finding transportation and programs with work-friendly hours can be challenging. According to the AFAA, transportation is a significant limiting factor for individuals with autism working toward employment and integration into the community, and one of the greatest financial burdens for families after housing. Additionally, many day programs operate from 10:00 a.m. to 1:00 p.m., a timeframe that is unlikely to coordinate with the schedules of working parents. For public and private programs, financial constraints, capacity limitations and low staff numbers present major obstacles to meeting demand. Since autism has a wide range of characteristics and each individual has a unique set of needs and abilities, care and support services often need to be individualized to be effective. For example, higher functioning adults with autism like Erik, featured in Best Kept Secret, may still need job coaches throughout their employment, but often the staff or funding needed to provide this support is lacking. Some parents, family members and teachers, discouraged by the lack of available and comprehensive support programs, start their own programs or pool their resources to create family coalitions, though this method is expensive. Such coalitions may take years to develop, especially when participating parents are working full- or even part-time. Since the filming of Best Kept Secret, Janet Mino has applied for a grant to open the Valentine Center, a center for young adults with autism that would provide transportation, therapy and activities during hours compatible with the schedules of working parents. In July 2013, New Jersey senator Robert Menendez announced the AGE-IN Act, legislation to address the needs of young adults with autism who are "aging out" of public education and other support services. The new legislation would fund research into options for improving transition programs, including continued education, housing, healthcare, transportation and community integration.

Sources: » Advancing Futures for Adults with Autism. "2009 Think Tank Report." » Allday, Erin. "Experts Brace for Wave of Autistic Adults." San Francisco Chronicle, October 4, 2012. » Autism Society. "The Autism Society’s 2013 Advocacy Agenda." » Autism Speaks. "Adults with Autism: What Services and Programs are Available at Twenty-Two?" » Burke, Cassie Walker. "When Autistic Children Are Children No More." Chicago Magazine, March 2013. » Davis, Linda H. "Still Overlooking Autistic Adults." The Washington Post, April 4, 2009. » Goehner, Amy Lennard. "A Generation of Autism, Coming of Age." The New York Times, April 14, 2011. » James, Susan Donaldson. "Children With Autism ‘Fall Off the Cliff’ After Graduation." ABC News, April 30, 2013. » McCarron, Bev. "Searching for Services for Adult Autistic Children." New Jersey Spotlight, October 29, 2010. » "Life Journey Through Autism: A Guide for Transition to Adulthood." 2006. » PBS Need to Know. "Adult Autism." » PBS Need to Know. "A Generation with Autism, Graduating into the Unknown." » Quartuccio, Alana."Senator Menendez Takes Action for Adults with Autism." Paramus Patch, July 16, 2013. » "Unfinished Business: Making Employment of People with Disabilities a National Priority." United States Senate. Committee on Health, Education, Labor and Pensions. July 2012. » Walsh-Sarnecki, Peggy. "Lack of State Services for Aging Autistic Makes Adulthood like 'Falling Off a Cliff.'" Detroit Free Press, April 25, 2012.

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Best Kept Secret: In Context

POV

The Autism Spectrum

In the film Best Kept Secret, Janet Mino teaches a class of six students, five of whom are on the autism spectrum. Autism spectrum disorder (ASD), commonly referred to simply as autism, is a neurological and developmental variation that affects learning, communication and social interaction.

Autism can be found across all racial, ethnic and social groups and is associated with a wide range of behaviors and characteristics that may include intense focus on a specific subject; unconventional means of learning and problem-solving; a strong need for routine and consistency; repetitive movement or self-stimulation, such as rocking or humming; difficulty with social interpretation and expression; and an under- or over-sensitivity to sensory experiences like sound, light and touch.

Each individual on the autism spectrum is different, with a unique set of characteristics and behaviors that may change depending on stress or anxiety levels and sensory stimulation. Individuals on the far end of the autism spectrum may be non-verbal, harm themselves or depend heavily on support from family and professionals, while other adults with autism may live and work independently. The exact cause of autism is unknown, though genetics and environmental conditions are thought to be possible factors.

Prior to May 2013, diagnosticians separated the varying degrees of autism spectrum disorder into subsets that included autism disorder, Asperger's syndrome, pervasive development disorder not otherwise specified, Rett syndrome and childhood disintegrative disorder. Since these subsets were differentiated solely by behaviors, they were often difficult to determine. In an effort to provide more clarity and diagnostic precision, the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (the manual published by the American Psychiatric Association and used as the standard for classifying mental disorders), released in May 2013, eliminated these subsets and instead breaks down positions on the autism spectrum by levels (for example, autism spectrum disorder, level 1, level 2 or level 3).

As of March 2013, the Centers for Disease Control and Prevention estimate that one in 50 children are identified with autism spectrum disorder, compared to about 1 in 155 in 2002 and 1 in 88 in 2012. However, this rapid increase may be more attributable to greater awareness and more frequent diagnosis than to an actual increase in the incidence rate. Diagnosing autism accurately is not easy and, according to the Diagnostic and Statistical Manual of Mental Disorders, there are more than 600 different symptom combinations that meet the minimum criteria for diagnosing autism disorder--just one of the formerly used subsets of autism spectrum disorder.

The Autism Diagnostic Observation Schedule (ASOD) and the Autism Diagnostic Interview, Revised (ADI-R) are the standard assessment tools used for diagnosis, but many other screening tests exist. Administering assessments that are accurate and comprehensive is a difficult task, as traits associated with autism exist on a continuum and may be observed among those not clinically diagnosed with a related disorder.

Sources:
» Armstrong, Thomas. The Power of Neurodiversity: Unleashing the Advantages of Your Differently Wired Brain. Cambridge: Da Capo Lifelong, 2011.
» The Autism Education Network. "Diagnosing Autism."
» Autism Research Institute. "DSM-V: What Changes May Mean."
» Autism Society.
» Autistic Self Advocacy Network.
» Carey, Benedict. "Diagnoses of Autism on the Rise, Report Says." The New York Times, March 29, 2012.
» Centers for Disease Control and Prevention.
» Gever, John. "Amygdala Enlarged in Young Autistic Children." MedPage Today, May 4, 2009.
» Grandin, Temple. "The World Needs People with Asperger's Syndrome" The DANA Foundation, October 1, 2002.
» Grandin, Temple and Richard Panek. The Autistic Brain: Thinking Across the Spectrum. New York: Houghton Mifflin Harcourt, 2013.
» Hamilton, Jon. "What's Different About the Brains of People with Autism?" NPR, June 4, 2012.
» Jaarsma, Pier and Stellan Welin. "Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement." Health Care Analysis, March 2012.
» Autistic Self Advocacy Network.
» National Institute of Neurological Disorders and Stroke.
» PBS. History of Autism Blame.
» PBS. Refrigerator Mothers. What Is Autism?
» PBS. This Emotional Life. What Is Autism?
» Salahi, Lara. "10 Myths About Autism." ABC News, October 23, 2008.
» Science Daily. "In Autism, Age at Diagnosis Depends On Specific Symptoms."

Newark and John F. Kennedy School

John F. Kennedy School, featured in Best Kept Secret, is located in Newark, New Jersey, a city with a population of 277,727, more than 25 percent of whom live below the poverty line. The state of New Jersey has one of the highest rates of autism in the nation.

John F. Kennedy School is a middle-secondary special education school that serves students throughout the district of Newark from 10 to 21 years of age. The school has two separate programs for students based on their diagnoses: Autistic and Multiple Disabilities with Moderate Cognitive Involvement.

Janet Mino, the teacher featured in Best Kept Secret, is part of the school's transition team, which, in cooperation with students and parents, assesses the needs and skill-development required for students as they transition from school to work and independent living. The team includes two transition teachers, four job coaches, a guidance counselor, a school social worker and a Child Study Team case manager. Transition teams are required by the federal government to prepare students who are receiving special education for life after graduation.

Sources:
» Augenstein, Seth. "N.J. Still Ranks High in Autism Rate, Report Says." The Star-Ledger, March 29, 2012.
» Autism Speaks. "Employment and Other Options."
» Goldberg, Dan."Autism Survey Finds 1 in 50 American Kids Are on the Spectrum." The Star-Ledger, March 21, 2013.
» Newark Public Schools. "John F. Kennedy School."
» Newark Public Schools. "State and County Quick Facts: Newark, New Jersey."

"Falling Off the Cliff"

Special education programs in the United States became mandatory in 1975 when the Education for All Handicapped Children Act (EHA) was passed by Congress to ensure equal rights and access for disabled students in the public education system. Additional rights and protections were later added and the EHA was renamed the Individuals with Disabilities Education Act (IDEA). IDEA entitles every special needs student to free public education, appropriate to his or her needs, and sends federal funding to states and local school systems to support special education services.

The federal government now requires every U.S. state to provide special education through 18 years of age, though most states extend this requirement to include students up to age 21. At 22, students age out of the public school system and the "entitlement laws" that provide services such as education, transportation, subsidized housing and vocational and life skills training cease to apply, leaving family, friends and teachers responsible for seeking out support programs. Parents and teachers refer to this as "falling off the cliff," because of the scarcity of continuing adult education programs and accommodations.

To prepare students and families for this life change, the federal law requires schools to begin the process of developing a transition plan for an individual with autism when that person reaches age 16, though the Organization for Autism Research recommends that planning for the transition begin at least as early as 14. Transition planning includes assessing, developing and documenting the skills, goals and challenges for each individual as he or she transitions out of the school system. Upon graduation, individuals with autism are assigned caseworkers from the state. Every state also has a department of vocational rehabilitation that is associated with a nationwide federal program designed to help individuals with disabilities find employment.

According to the Disability Network, experts estimate that at least 90 percent of adults with autism end up living with their parents or in institutions after they finish school. A 2012 study from Pediatrics, the official journal of the American Academy of Pediatrics, found that within the first six years of graduation, about one third of young adults with autism had continued on to college, and about half held paying jobs. Six percent of adults with autism work full-time, and those who come from low-income backgrounds and/or have severe disabilities face a much higher risk of not continuing education or finding employment after high school.

In 2012, the annual public and private cost of autism reached $126 billion, more than triple what it was in 2006, and a majority of those costs were in education and adult care. Studies show that individuals with autism who do not receive continued assistance into adulthood are much more likely to regress in their social and verbal skills, while early intervention can lower lifetime costs of care for an individual with autism by nearly two thirds.

According to the organization Advancing Futures for Adults with Autism (AFAA), public and private costs of autism will continue to rise rapidly if support systems for adults with autism are not made more accessible and comprehensive.

Sources:
» Allday, Erin. "Experts Brace for Wave of Autistic Adults." San Francisco Chronicle, October 4, 2012.
» Armstrong, Thomas. The Power of Neurodiversity: Unleashing the Advantages of Your Differently Wired Brain. Cambridge: Da Capo Lifelong, 2011.
» Advancing Futures for Adults with Autism. "Overview."
» Autism Society. "Individualized Education Plan (IEP)."
» Autism Speaks. "New Research Finds Annual Cost of Autism Has More Than Tripled to $126 Billion in the U.S. and Reached £34 Billion in the U.K."
» Education Week. "Special Education."
» Hensley, Scott. "Jobs and College Pose Big Challenges for Young People with Autism." NPR. May 14, 2012.
» James, Susan Donaldson. "Children With Autism 'Fall Off the Cliff' After Graduation." ABC News, April 30, 2013.
» McCarron, Bev. "Searching for Services for Adult Autistic Children." New Jersey Spotlight, October 29, 2010.
» Organization for Autism Research. "A Guide for Transition to Adulthood." New Jersey Spotlight, October 29, 2010.
» PBS Need to Know. "A Generation with Autism, Graduating into the Unknown."
» Shattuck, Paul T., Sarah Carter Narendorf, Benjamin Cooper, Paul R. Sterzing, Mary Wagner, and Julie Lounds Taylor. "Postsecondary Education and Employment Among Youth with an Autism Spectrum Disorder." Pediatrics, May 14, 2012.
» "Unfinished Business: Making Employment of People with Disabilities a National Priority." United States Senate. Committee on Health, Education, Labor and Pensions. July 2012.
» Walsh-Sarnecki, Peggy. "Lack of State Services for Aging Autistic Makes Adulthood like 'Falling Off a Cliff.'" Detroit Free Press, April 25, 2012.
» "Workers with a Disability Less Likely to be Employed, More Likely to Hold Jobs with Lower Earnings, Census Bureau Reports." United States Census Bureau. March 14, 2013.

Services and Programs for Adults with Autism

In the 1980s and 1990s, the number of children diagnosed with autism increased rapidly, and approximately half a million of those children are expected to reach adulthood over the next decade. This drastic growth, in conjunction with nationwide budget cuts, means that the need for support programs far exceeds available resources. Support services for adults with autism vary by state and may include health and rehabilitation services, residential programs, employment training, day programs, recreational activities and home care.

The majority of long-term government services fall under the following programs: Social Security Disability Insurance, Supplemental Security Income, Medicaid and Medicare. However, to qualify for these programs, most adults must be able to prove that their condition is such that they are unable to work, and the payments are often not enough to cover day programs, job coaches or other support programs that could otherwise help prepare individuals for employment and/or independence. In New Jersey, for example, state funds provide an average of $22,000 per high school graduate, but residential and support programs can cost anywhere between $35,000 and $90,000 per year. Eligibility for services varies from state to state, and families/individuals must reapply and go to the end of the waiting list if they cross state lines. Laws such as the Americans with Disabilities Act (ADA) and IDEA are put in place to ensure equal access to support programs, but cannot guarantee that individuals will be provided with adequate services. Adults can qualify for Medicaid community waivers, which provide additional services designed to keep them out of institutions and in the community, but these waivers can have a waitlist of more than 8,000 names, and some individuals face a wait time as long as 10 years.

While those with significant intellectual disabilities often have a strong chance of receiving state and federal support and individuals with high functioning autism are more likely to live independently and continue on to college and careers, those who fall in the middle of the autism spectrum may face additional challenges. They may have difficulty continuing on to postsecondary education or obtaining jobs without support (such as that provided by job coaches), but also have a harder time proving that their needs are great enough to qualify for major supportive care.

Many families and caregivers must work full-time in order to afford services, but finding transportation and programs with work-friendly hours can be challenging. According to the AFAA, transportation is a significant limiting factor for individuals with autism working toward employment and integration into the community, and one of the greatest financial burdens for families after housing. Additionally, many day programs operate from 10:00 a.m. to 1:00 p.m., a timeframe that is unlikely to coordinate with the schedules of working parents.

For public and private programs, financial constraints, capacity limitations and low staff numbers present major obstacles to meeting demand. Since autism has a wide range of characteristics and each individual has a unique set of needs and abilities, care and support services often need to be individualized to be effective. For example, higher functioning adults with autism like Erik, featured in Best Kept Secret, may still need job coaches throughout their employment, but often the staff or funding needed to provide this support is lacking.

Some parents, family members and teachers, discouraged by the lack of available and comprehensive support programs, start their own programs or pool their resources to create family coalitions, though this method is expensive. Such coalitions may take years to develop, especially when participating parents are working full- or even part-time. Since the filming of Best Kept Secret, Janet Mino has applied for a grant to open the Valentine Center, a center for young adults with autism that would provide transportation, therapy and activities during hours compatible with the schedules of working parents.

In July 2013, New Jersey senator Robert Menendez announced the AGE-IN Act, legislation to address the needs of young adults with autism who are "aging out" of public education and other support services. The new legislation would fund research into options for improving transition programs, including continued education, housing, healthcare, transportation and community integration.

Sources:
» Advancing Futures for Adults with Autism. "2009 Think Tank Report."
» Allday, Erin. "Experts Brace for Wave of Autistic Adults." San Francisco Chronicle, October 4, 2012.
» Autism Society. "The Autism Society's 2013 Advocacy Agenda."
» Autism Speaks. "Adults with Autism: What Services and Programs are Available at Twenty-Two?"
» Burke, Cassie Walker. "When Autistic Children Are Children No More." Chicago Magazine, March 2013.
» Davis, Linda H. "Still Overlooking Autistic Adults." The Washington Post, April 4, 2009.
» Goehner, Amy Lennard. "A Generation of Autism, Coming of Age." The New York Times, April 14, 2011.
» James, Susan Donaldson. "Children With Autism 'Fall Off the Cliff' After Graduation." ABC News, April 30, 2013.
» McCarron, Bev. "Searching for Services for Adult Autistic Children." New Jersey Spotlight, October 29, 2010.
» "Life Journey Through Autism: A Guide for Transition to Adulthood." 2006.
» PBS Need to Know. "Adult Autism."
» PBS Need to Know. "A Generation with Autism, Graduating into the Unknown."
» Quartuccio, Alana."Senator Menendez Takes Action for Adults with Autism." Paramus Patch, July 16, 2013.
» "Unfinished Business: Making Employment of People with Disabilities a National Priority." United States Senate. Committee on Health, Education, Labor and Pensions. July 2012.
» Walsh-Sarnecki, Peggy. "Lack of State Services for Aging Autistic Makes Adulthood like 'Falling Off a Cliff.'" Detroit Free Press, April 25, 2012.