Youth with Autism: Roundtable Views of Services Needed During the Transition into Adulthood
Published: 2016-10-18T00:00:00

Fast Facts:

Highlights:
section_title: Why GAO Did This Study
paragraphs: About a half a million youth with ASD will enter adulthood over the next decade. As they exit high school, they must obtain services as adults. Previous GAO work has shown that students with disabilities who are transitioning to adulthood face challenges identifying and obtaining adult services. GAO was asked to study the services and supports youth with ASD need during the transition to adulthood. This is the first in a series of reports.
GAO studied (1) the services and supports transitioning youth with ASD need to attain their goals for adulthood, (2) the characteristics of these services and supports, and (3) how youth with ASD can be fully integrated into society. To address these objectives, GAO convened a roundtable discussion on March 3 and 4, 2016. GAO selected 24 panelists, including adults with ASD, service providers, researchers, and parents of youth with ASD. GAO interviewed prospective panelists in advance of the discussion and selected a panel with a broad base of expertise reflecting the diversity of the autism community.
The panel described the services and supports that youth with ASD may need to help them achieve five goals for adulthood: postsecondary education; employment; maximizing independent living; health and safety; and maximizing community integration. GAO analyzed the transcripts of the panel as well as documents provided by panelists. GAO is not making recommendations in this report.
section_title: What GAO Found
paragraphs: Youth with Autism Spectrum Disorder (ASD) transitioning to adulthood may need a wide range of services and supports to help them achieve their goals, according to a panel GAO convened in March 2016. ASD is a highly individualized condition with characteristics that vary in degree and type from person to person. Autism characteristics may hinder or help youth achieve their goals—such as postsecondary education and community integration. For each goal, the panel described services and supports that youth (ages 14-24) with ASD transitioning to adulthood may need to address autism characteristics and other health conditions that affect their ability to attain the goal. GAO grouped these services into 14 broad categories.
To support a successful transition into adulthood, the panel said youth need to be able to access services that are individualized, timely, equitable, and community- and evidence-based, among other things. The panel discussed the need for timely, individualized services that address the variation in autism characteristics and any changes over a person's lifetime. For example, a person's verbal abilities may change over time, and their needs for communication services would also change. The panel said transitioning youth with ASD need equitable access to services regardless of their race, gender, family income, or location. For instance, the panel said that female and minority youth may be diagnosed at a later age and thus receive fewer services during school and may need additional transition planning services. The panel also emphasized the need for services within youths' local communities in order to foster access and community involvement. In addition, the panel said that while services should be evidence-based, more research into program efficacy is needed.
To improve the ability of autistic youth to fully integrate into society, the panel cited the need for a new approach to providing supports and better public understanding of autism. Such an approach would place a shared responsibility for inclusion on both society and youth with ASD. For example, according to the panel, youth with ASD should learn workplace social expectations and meet them to the extent they can, but employers should also recognize that some social rules, such as expecting individuals to smile, can be difficult for some individuals with autism. The panel also said that widespread knowledge of autism could lead to better understanding of autistic youths' potential and enhance their chances of attaining it.

section_title: Letter
paragraphs: About a half million youth with Autism Spectrum Disorder (ASD) will enter  adulthood over the next decade, according to a 2015 report. As these  students exit high school, they leave their school-based support systems  behind and must obtain services as adults, making the transition to  adulthood particularly challenging. Commonly known as autism, ASD is  a group of complex developmental disorders characterized by difficulties  with social interactions and communication, highly focused interests, and  repetitive or ritualized behaviors. While in elementary and secondary  school, children with autism may receive many services—such as  speech, behavioral, or occupational therapy, job training, and  transportation—through their public schools, as required by the  Individuals with Disabilities Education Act (IDEA). However, according to  our prior work, these services typically end when youth exit from school.  Once students with disabilities complete their high school program, many  of them face significant challenges obtaining the services they need to  make a successful transition to higher education, work, or community  life.
You asked us to provide information on the transition needs of youth with  ASD. This report examines three questions:  1.  What services and supports do transitioning youth with autism need to  attain their goals for adulthood?  2.  What are the characteristics of needed services and supports?  3.  How can youth with autism be fully integrated into society?
This is the first in a series of reports on youth with autism who are  transitioning to adulthood. In this report, we focus on describing the  services that youth with ASD need to help them make a successful  transition into adulthood. A second engagement will examine the services  provided to transitioning youth with ASD and any challenges they may  face obtaining them.
To answer our research questions, we convened a roundtable discussion  on March 3 and 4, 2016. We selected a total of 24 panelists, including  autistic adults, service providers, employers, researchers, and parents of  youth with autism. We selected panelists based on their experience with  or knowledge about autism, recommendations from other stakeholders  with subject matter knowledge, and to ensure a variety of backgrounds  and perspectives that reflect the diversity of the autism community,  including variations in service areas, income, race, gender, geographic  location, and urbanicity. See appendix I for our scope and methodology,  including more details about how we selected our panelists, and appendix  II for a copy of the agenda for the event. We asked the panel about the  services that transitioning youth across the autism spectrum need to help  them achieve five goals for adulthood:  1.  Postsecondary education.  2.  Employment.  3.  Maximizing independent living.  4.  Health and safety.  5.  Maximizing community integration.
We chose these goals because they were either listed in the transition  planning requirements for high school students receiving special  education services (goals 1, 2, and 3) or described by potential panelists  in pre-selection interviews as particularly important (goals 4 and 5).
We asked the panel to describe services ideally needed for a successful  transition to adulthood, regardless of what services may currently be  available or feasible. We did not verify the accuracy of the information  they provided. The panel also pointed out that many of the services  needed to support youth with ASD may also support youth with other  disabilities. While we focus on how these services would particularly  address characteristics associated with autism, the panel also cautioned  against singling out autistic youth unnecessarily.
We identified the emerging themes which form the body of this report by  conducting a content analysis of the transcript of the 2-day event as well  as documents the panelists submitted to clarify or support information  discussed during the panel meeting. Our systematic content analysis  allowed us to attribute these themes, as well as specific examples given  for illustrative purposes, to “the panel” throughout this report. We asked  panelists for comments on a draft of this report, which we incorporated as  appropriate.
For the purpose of this report, when discussing services that transitioning  youth with autism may need, we grouped services under 14 broad  categories, such as life skills education and experience, family education  and supports, and vocational supports. The actual range of services  provided under these terms could be quite broad, with significant variation  in method, purpose, philosophy, and effectiveness. See appendix III for  details on these service categories.
We conducted this performance audit from July 2015 to October 2016 in  accordance with generally accepted government auditing standards.  Those standards require that we plan and perform the audit to obtain  sufficient, appropriate evidence to provide a reasonable basis for our  findings and conclusions based on our audit objectives. We believe that  the evidence obtained provides a reasonable basis for our findings and  conclusions based on our audit objectives.
subsections: section_title: Background
paragraphs: According to the Centers for Disease Control and Prevention, about 1 in  68 children were identified as having ASD in 2012 (about 1.5 percent of  8-year olds). ASD is a complex developmental disorder with  characteristics that can range from mild to more pronounced (see fig. 1).
Each autism characteristic may vary in type and degree from person to  person and can fluctuate over time. The combination of characteristics  results in a highly individualized condition, as illustrated in figure 2.
subsections: section_title: Other Health Conditions Often Associated with Autism
paragraphs: Certain medical or mental health conditions—called comorbid  conditions—often occur with autism. For example, data from the 2011  Survey of Pathways to Diagnosis and Services showed that over half of  autistic youth aged 15-17 had also been diagnosed with an attention  deficit disorder (53 percent) or anxiety (51 percent), nearly one quarter  had depression, and 60 percent had at least two comorbid conditions.  Other common comorbid conditions include sleep disorders, intellectual  disability, seizure disorders, and gastrointestinal ailments.
section_title: Federally Required Education and Transition Services for Children and Youth with Disabilities
paragraphs: To support the educational needs of children with disabilities, Congress  originally passed IDEA in 1975. IDEA requires states and local  educational agencies to identify and evaluate children with disabilities and  provide special education and related services to those who are eligible.  Such services and supports are formulated in an Individualized Education  Program (IEP) and may include speech or occupational therapy and  behavioral supports, among others. The 2004 reauthorization of IDEA  required that, beginning no later than age 16, a student’s IEP must  include measurable postsecondary goals, based on age-appropriate  transition assessments, related to training, education, employment, and,  where appropriate, independent living skills. The IEP must specify the  transition services needed to assist the student in reaching those goals.
Not all youth with autism received timely transition planning services,  according to an analysis of data from the Department of Education’s  (Education’s) National Longitudinal Transition Study-2 (NLTS2). That  analysis showed that in 2009, 58 percent of young adults with ASD  reported that they had been given a transition plan by the federally  required age. This percentage was lower for youth from lower income  households, African-American youth, and youth with the highest  conversation skills.
section_title: Adult Service Delivery System
paragraphs: Upon exiting high school, youth with autism may obtain services by  applying as adults and establishing eligibility for a number of programs.  Specifically, we reported in 2012 that four federal agencies—Education,  the Department of Health and Human Services (HHS), the Department of  Labor, and the Social Security Administration—administer the key federal  programs that provide services to youth with disabilities as they transition  from high school. In addition, these and other federal agencies fund a  number of other programs through grants to states, localities, and  nongovernmental organizations, which often have flexibility on how to  administer services. For example, Education’s Rehabilitation Services  Administration funds state vocational rehabilitation agencies through  formula grants, which have a state matching requirement, to help people  with disabilities prepare for and engage in gainful employment, and  some states use Medicaid funds to provide home and community-based  services for individuals with certain types of disabilities who might  otherwise be cared for in an institutional setting.
In our 2012 report, we found that youth and their families faced  challenges in identifying, navigating, and establishing eligibility for  services for adults with disabilities, including autism. In addition, we  found that the adult service system did not routinely provide a coordinated  plan of services or objectives for youth making the transition to adulthood  and—unlike the special education system for younger children—did less  to ensure that needed services would be provided. Youth with autism  who are entering the adult service system may have to apply to multiple  agencies for services and establish their eligibility for each agency’s  services. The difficulty obtaining adult services has been called “falling off  a cliff” by the autism community.
section_title: Panel Theme: Needs for Services and Supports Depend on Transitioning Youths’ Goals for Adulthood
paragraphs: The panel told us that youth with ASD may need services addressing  individual autism characteristics—or a combination of autism  characteristics and other health conditions—that affect their ability to  attain their goals for adulthood. The services needed to address any  specific characteristic may differ depending on the goal. The panel told us  that some characteristics of autism can be strengths that may help  individuals with ASD achieve their goals—for example, intense focus on a  specific interest can be very productive in the workplace. The panel  discussed the importance of valuing the characteristics that may facilitate  goals and warned against assuming that autism characteristics need to  be “fixed.” The panel discussion, however, focused primarily on services  and supports needed to address autism characteristics that can hinder  progress toward goal attainment.
subsections: section_title: Goal: Postsecondary Education
paragraphs: The panel told us that, like their peers without autism, many youth with  ASD pursue postsecondary education or training, although not all of them  finish their academic programs. According to NLTS2, in 2009, 36 percent  of young adults with ASD had attended some type of postsecondary  education institution. Of those youth, 32 percent had attended a 4-year  college, 70 percent had attended a 2-year college, and 33 percent had  attended a vocational, business, or technical school. According to the  panel, in addition to more traditional classroom settings, some youth with  ASD also attend online programs and an increasing number of  specialized colleges designed to meet the specific needs of students with  disabilities.
According to the panel, youth with autism may need some of the same  supports as other postsecondary students to help them succeed in the  higher education environment, but may require increased intensity or  providers with training in autism. For example, many students need help  with organizational skills, such as managing time or prioritizing tasks, to  keep up with the pace of academic demands. The panel cited mental  health conditions, especially anxiety, as some of the biggest impediments  to success in postsecondary education and said these conditions can  have a greater effect than youths’ autism characteristics. Youth may also  need supports to help them navigate social demands of college life, such  as relationships with roommates, dating, and issues with alcohol and drug  use. The panel noted that self-care is especially important because poor  personal hygiene can lead to isolation. The panel also discussed the  need to have stronger supports at the beginning of college that taper  down as students experience success and learn to navigate the  environment. Table 1 shows some of the services and supports that may  be needed in a postsecondary education environment.
Young adults with ASD have lower rates of employment than some other  people with disabilities. For example, in 2009, 58 percent of youth with  autism in their early 20s had ever worked for pay outside the home,  compared to 91 percent of youth with emotional disturbances and 74  percent of youth with intellectual disabilities. The diverse nature of  autism means no single workplace setting or set of supports is  appropriate for all autistic individuals. Examples of various workplace  settings include the following:
Full-time or part-time employment with market wages and  responsibilities, with or without long-term supports—such as a job  coach to help with communication and social navigation;
Self-employment, which may offer the flexibility to tailor the job to the  individual’s strengths and the work environment to their needs; and
A workplace that primarily or exclusively employs individuals with  disabilities—with wages that can fall below the federal minimum  wage. Some workplaces provide services, supervision, or training in  life skills or vocational skills.
Customized employment may provide an opportunity for some individuals  with autism who might otherwise not be able to find employment.  Employers create a job specifically designed for an individual’s strengths,  abilities and support needs.
The panel told us that the type and level of supports that youth may need  to succeed in the workplace may vary over time. For example, youth may  need training in job-seeking, interviewing, or organizational skills at the  beginning of their employment, while they may need job coaching  throughout their employment. The panel noted that while some programs  may teach youth with autism how to interview and some of the logistics of  work, youth also need to learn about navigating the social aspect of  employment and may require ongoing support in this area. The panel  noted that social difficulties in the workplace could lead to isolation,  marginalization, or job termination. Additionally, according to the panel,  some vocational supports could help youth find jobs that build on some of  their autism strengths, such as the ability to focus intensely on a problem  or activity or skills in following routines and performing tasks consistently.  Some of the services and supports the panel discussed in conjunction  with successful employment are highlighted in table 2.
One of the goals of IDEA is to prepare students for independent living.  The level of independence that autistic youth may achieve varies widely— some are able to live in their own home (with or without supports), while  others require 24-hour care. According to an analysis of NLTS2, young  adults with autism are less likely to live independently than youth with  other disabilities, including intellectual disabilities and emotional  disturbances. Specifically, in 2009, 19 percent of autistic adults in their  early 20s had lived independently at some point, either with or without  supports. Fourteen percent had lived in a supervised setting, such as a  group home or medical facility, which may have provided services such  as life skills education or vocational supports.
The panel discussed two key aspects of independence—performing daily  living activities and making and carrying out decisions. Daily living  activities may include tasks such as cleaning, shopping, paying bills,  maintaining personal hygiene, and preparing meals. Again, while some  youth with ASD do not need help with these activities, some may need to  learn these skills step by step and then practice them in real life to gain  proficiency. For example, some youth may need a list of each step of  washing hair—shampoo in hand, lather into hair, rinse, etc. The panel  said that some youth may be able to perform tasks in isolation, but may  have trouble combining them with employment or social demands.  Youths’ abilities to make their own decisions may also vary, depending on  their skills in communication and self-advocacy—identifying and  expressing their needs to others. Regardless of their level of disability, the  panel said that it is critically important that all youth be given the  opportunities to state their own preferences to the extent of their  capabilities. Table 3 shows some of the services and supports that the  panel said may help youth reach their maximum independence.
Health and safety are essential to maintaining a quality life for all people,  including youth with ASD. According to the panel, health and safety are  the primary goals for some youth with high support needs. The panel said  that in order for youth with ASD to achieve health and safety, there need  to be enough medical and mental health caregivers who are trained in the  unique needs of patients with ASD and prepared to accommodate them.  The panel noted that physical or mental comorbid conditions are  sometimes more of a concern than autism. For example, unaddressed  mental health issues like depression or anxiety can lead to lower social  and life skills and increased self-injurious behavior, family stress, and  suicidal thoughts and behaviors. The panel also discussed sleep issues— such as difficulty going to sleep or remaining asleep—and noted that  youth with ASD can have sleep disruptions lasting several days.  Extended sleep deprivation could have severe effects on a person’s  ability to function and manage their autism characteristics. Finally, the  panel said that reproductive and sexual health care were often  overlooked due to mistaken assumptions that autistic youth would not  engage in sexual relationships.
In addition, the panel discussed several reasons that youth with ASD may  need supports to help them maintain their safety. For example, the panel  told us that youth with ASD are more likely to be bullied or abused than  other youth; some youth with ASD experience aggressive or self-injurious  behavior, especially when they are frustrated or in pain; and some autistic  youth wander away from their caregivers and are hit by cars or drown.  The panel also discussed how some of the social and communication  difficulties of ASD can make it hard for youth to tell when a situation or  person is dangerous, and gave examples of youth who were coerced by  gang members into committing crimes, unintentionally provoked police  officers, or didn’t know when they were being sexually abused or bullied.  Some of the services and supports the panel discussed in conjunction  with health and safety are highlighted in table 4.
Community integration includes both individual social interactions and  broader community participation. In 2009, according to NLTS2 data,  about one-third of young adults with autism did not participate in any  community activities, and one-quarter had not had any contact with  friends for at least a year. The panel noted that community integration is  closely tied to higher education and employment because these are  where adults tend to establish their social circles. The panel said that  having housing, jobs, services, and social opportunities that are located in  the community can facilitate interaction with neighbors who do not have  ASD and help increase societal acceptance of autism. The panel also  described transportation as one of the most important factors in achieving  this goal, as it enables physical access to the community, and said that  many youth with ASD can use public transportation independently if they  receive adequate training. Table 5 shows some of the services and  supports that the panel said may be needed for community integration.
section_title: Panel Theme: The Need for Access to Evidence-Based Services that Are Individualized, Flexible, Timely, and Provided in the Community
subsections: section_title: Individualized and Flexible Supports
paragraphs: The panel said that, like other transitioning youth with disabilities, autistic  youth need a personalized mix of services that address their unique  support needs. Given the individualized and complex nature of ASD, no  single combination of supports and services will prepare all youth with  ASD for success as adults, according to the panel. For example, for a  successful transition to a higher education environment, one student may  need organizational coaching in order to develop study skills, while  another may need mental health support for anxiety and peer mentoring  in order to attend class every day. According to the panel, having the right  combination of supports to meet each person’s individual needs may  contribute to success in higher education, employment, community  integration, and overall quality of life. The panel also told us that the  creation of an individualized support system begins with a comprehensive  assessment of a person’s skills and abilities.
On Individualized Supports   “Education, employment, health care, access to communication and self-determination,  and support for overall community integration are all critical components for our  community. A comprehensive approach which provides individualized, consumer- directed supports in all of these areas can enable all autistic people to participate in their  communities, self-advocate, and live meaningful and productive lives with a high quality  of life, regardless of level of disability.”
The panel said that individuals with ASD need flexible services and  supports that can adapt to changes in their needs. Autism is a lifelong  disability with characteristics that can shift over time, especially as  personal circumstances and comorbid health conditions change. For  example, the panel described people whose verbal skills fluctuated from  nonverbal to highly fluent during their lifetimes. During their nonverbal  periods, they would need communication aids that were not needed  during their fluent periods. Additionally, the panel said that the ability to  fall and remain asleep could fluctuate over time, and youth may need  behavioral therapy or medication during sleepless periods. The panel also  cautioned against removing supports that may be needed over the long  term. For example, a job coach may be used at the beginning of an  autistic person’s employment to help them acclimate to their employer  and vice versa. However, the individual may also benefit from continued  support—either ongoing or occasional—from a job coach to help address  new issues that arise over the course of their employment. Flexible job  coaching that was available when needed could help the individual retain  the job.
section_title: Timely Access to Supports
paragraphs: The panel said that youth with autism need timely access to services and  supports, beginning with having enough service providers to meet the  demand. For example, according to the panel, youth receiving care from  service providers who primarily work with children, such as  developmental pediatricians and speech and language therapists, may  need access to adult providers after their transition, because their needs  for the service do not necessarily end when they reach a certain age. The  panel also said that waiting lists for services have gotten longer due to a  “tsunami” of increased demand. Furthermore, due to the unpredictable  nature of ASD, there may be times when autistic youth need immediate  access to services. For example, if autistic youth become aggressive or  self-injurious, they and their families may need such services as  emergency rooms, hospitals with specialized units, residential behavioral  treatment programs, or direct support providers. Our panel described  situations where families lacked immediate access to these services, and  hence tried to care for aggressive youth at home, which can risk the  safety and well-being of both the person with ASD and others present in  the home.
The panel told us that in order for autistic youth to have adequate access  to supports, providers of adult services—including basic services  important to all adults—would ideally have the expertise necessary to  serve clients with autism. For example, dentists may need to be prepared  for behaviors often associated with autism, such as the inability to sit in  the dental chair, agitation, or self-injury (e.g., head banging). Additionally,  according to the panel, youth with autism may have difficulty developing  new relationships with service providers and are negatively affected by  high turnover rates. The panel noted that support providers who work  directly with autistic individuals have a physically and emotionally  demanding job and that turnover among these providers is likely related  to prevailing wages for this work.
On Provider Expertise   “One of the things we need to do is teach the adult physicians how to deal with adults  who have developmental disabilities. Beyond checking their blood sugar and their  cholesterol levels and blood pressure, you need to be checking their life. How are they  doing psychologically?  How is their self-esteem?  How are they doing occupationally?   And how is their living environment with their families or away from their families?”
The panel cited research noting that any gaps or loss of services during  the transition from a school-based support system to adulthood could  have long-lasting detrimental effects on youths’ health, employment,  educational attainment, and family stability. To avoid gaps, according to  the panel, the various programs for adults should have compatible  eligibility requirements so that youth do not have to re-establish eligibility.  Specifically, the panel said there should be a single point of entry into  adult services, much as the school provides a single point of entry for  many services for children. The panel also suggested that transition  planning start earlier—as early as middle school—and end when youth  turn 25. Finally, the panel noted that autistic youth and their parents need  information to help them navigate the adult service system and find the  supports they need.
section_title: Equitable Access to Supports
paragraphs: The panel said that transitioning youth with ASD should have access to  the services they need regardless of their income, geographical location,  race, or gender. For instance, the panel told us that low- and middle- income youth with ASD whose families cannot afford to pay for their  services out-of-pocket would ideally be able to rely on public programs to  help them pay for their adult services—which is not always the case  currently. The panel also stated that access to services should not vary  depending on the states and communities where youth live. For example,  in rural areas, support services like transportation or telemedicine— wherein providers serve patients remotely, such as via video  conference—may help improve access to services that are more common  in large cities. The panel also discussed the need to maintain a  continuum of care as youth move across state lines, noting that even  though eligibility rules and service provision may differ from state to state,  youths’ needs for services and funding do not necessarily change when  they move. The panel suggested a portable and flexible funding  mechanism that would allow youth to pay for services in any location.
Finally, in order to have equitable opportunities to pursue their adult  goals, the panel said that some demographic groups, such as females or  minorities, may have specific needs. For example, according to the panel,  workplaces may have higher social expectations for women than men,  and mentoring from other women on the spectrum could help them learn  how to react to these expectations. The panel also noted that girls and  minority students are diagnosed with ASD at a later age than other youth,  on average—sometimes after they have left high school. As a result, the  panel said, they may have received fewer services and may need more  help as they transition to adulthood. Additionally, the panel said that  minority students—especially those living in low-income, urban areas— may face issues compounded by having less preparation for the transition  during their school years, including less parental education on available  resources as well as less access to medical care. To address their needs,  the panel discussed services such as additional transition planning,  education and training for parents on services youth are entitled to, and  medical case managers who can help these youth locate, access, and  communicate with medical care providers.
On Access to Services   “Without transportation, it can be difficult or impossible for autistic youth to hold jobs,  pursue higher education, go to community events, meet with peers, access healthcare,  or develop relationships, hobbies, or interests outside of the home.”
section_title: Well-Coordinated, Holistic Supports
paragraphs: According to the panel, services for transitioning youth with ASD should  be well-coordinated, with service providers, youth, and their families  agreeing on common goals and communicating regularly. The panel told  us that, because autism can affect so many aspects of an individual’s  health and behavior, coordinated care that supports the whole person is  particularly important for youth with ASD. For example, according to the  panel, an individual needing care from both a mental health practitioner  and a developmental disability doctor may not be adequately supported  by either provider, because each may assume the other has primary  responsibility and thus neither may take a holistic view of the individual’s  care. Additionally, the panel said that some medical personnel find that  other service providers are among the best sources of information about  their patients. The panel advocated for a comprehensive approach in  which service providers work together to simultaneously address issues  of employment, housing, health care, and behavioral health. The panel  specifically mentioned two examples of holistic supports: (1) mental  health services should be coordinated with other services, such as  employment, housing, or education; and (2) medication should be  managed in coordination with a person’s behavioral health goals and  current status.
On Holistic Services   “I think the need is for holism. You really need a team approach with health care,  behavioral health, and supported employment. It kind of becomes a necessity that  that’s a package deal at this point.”
section_title: Community-Based Supports
paragraphs: The panel emphasized the importance of providing services in the  community, both by providing some educational services outside the  classroom and by locating services in the neighborhoods where youth  live. First, the panel noted that many life skills, such as grocery shopping  or taking a bus, are best learned experientially—by practicing them in the  community—especially for youth with ASD who may have difficulty  transferring skills learned in one location, such as the classroom, to  another environment, such as the community. Additionally, the panel told  us that some youth with ASD may have difficulty making decisions that  depend on changing input. For example, when deciding whether to cross  the street, it is not enough to know whether a car is coming. The decision  also depends on judging how far away the car is, a factor that continually  changes. It is difficult to gain experience making these types of decisions  without practicing them experientially.
On Experiential Learning   “Curricula are just words on paper without the supportive environments needed to  practice these.”
Second, the panel also discussed several benefits of providing services  close to youths’ homes:
Local services may be easier to reach for youth with limited access to  transportation.
Local venues may be more familiar, which may help mitigate  difficulties navigating new situations.
Local services may help youth better integrate into their community.
Rather than youth with ASD becoming known as those who are bused  away, receiving services near home may help their neighbors get to  know them as members of the community.
On Community-Level Solutions   “I think we need to be fostering community-level solutions. If all of our focus is entirely on  clinical interventions for one person at a time, we're going to be missing the more  important questions about how do we create the communities, neighborhoods, and social  institutions that are welcoming and inclusive of people with disabilities.”
section_title: Research Needs
paragraphs: Consistent with our recent work on autism research, the panel  emphasized that limited research exists on the service needs of  transitioning youth or adults with ASD. In a June 2015 report, we found  that research into the needs of adults consistently received less federal  funding than other areas of autism research, such as the biology of  autism. Also consistent with our work, the panel said that services  should be grounded in evidence-based research and programs should be  held accountable for delivering results, but they underscored that more  research was needed for this to be feasible. The panel recommended  studying the developmental disability system as a whole to determine  what large-scale changes may be needed. Some of the specific areas of  research they recommended included:  the needs of transitioning youth and adults with ASD, effective adult services,  comorbid conditions and health needs,  improving collaboration among service providers, and efficient uses of funding.
On Need for Research   “I would rather see investments in performance measurement, quality improvement, and  accountability that promise to help all people by incentivizing learning systems that aim  to continuously experiment and improve…for everyone. The really shocking thing in all  this is that we spend roughly $130 billion per year on services for autism across the  lifespan but we have so little insight into who gets what and with what effect.”
section_title: Panel Theme: A New Approach to Supporting Youth with Autism to Enhance Their Integration into Society
paragraphs: To improve the ability of youth with ASD to fully participate in society, the  panel cited the need for a paradigm shift, including a new approach to  supports. In this new paradigm, society and autistic youth alike would  share the responsibility for inclusion, and the public and service providers  would have better understanding of autistic youths’ potential. The panel  likened this new paradigm to the magnitude of the changes made to  physical infrastructure, such as curb cuts, ramps, and elevators, to  improve mobility for people with physical disabilities.
subsections: section_title: New Approach to Supporting Youth with ASD
paragraphs: The panel told us that one element of the new paradigm would be the  understanding that the responsibility for the inclusion of autistic youth  rests on both the individual with autism and society. The panel said  society expects individuals with autism to continually adapt to situations  that are difficult for them—even though adaptation itself is difficult for  many people with ASD. The panel acknowledged that people with autism  are responsible for learning about social expectations for school, work,  and social settings, but said that institutions and communities should also  learn how best to support individuals with ASD, given the characteristics  of autism. For example, the panel said that explaining the “unwritten  rules” of workplace social behavior to youth with autism may facilitate  their inclusion. On the other hand, the panel emphasized that society  should acknowledge that some unwritten rules may lead to the exclusion  of autistic youth. For example, the panel noted that it may not be  reasonable to expect people with autism to smile or make small talk even  though smiling and chatting are often expected in certain situations, such  as in the workplace.
On a New Approach to Supporting Youth with Autism:  And if you think about social navigation and autism, and you think about physically  navigating a space if you have a mobility difference, what are universal design  standards? I don't mean just the structure of a building but what kinds of things could be  universally implemented to make those places more accessible for us with our specific  disability…so that the onus isn't always on the individual to have to mimic social  behaviors that are expected in order to have a standard of living of some kind.
The panel said that some of the changes they envision might already be  supported by federal laws that govern services to people with disabilities,  including youth with autism. For example, the panel told us that although  existing law requires the provision of experiential learning opportunities  for youth with disabilities, including autism, some teachers provide  instruction only in a classroom setting despite the benefits of experiential  learning.
section_title: Greater Public Understanding of Autism
paragraphs: The panel described how greater public understanding of the  characteristics, potential, and challenges of autism would be key to the  new paradigm. According to the panel, lack of knowledge about autism  can result in misinterpretations of the meanings behind some behaviors.  For example, an autistic student with anxiety and depression may miss  classes due to those comorbid conditions and may not seek help due to  communication difficulties caused by autism. Without an understanding of  autism and the behavioral effects of its interaction with comorbid  conditions, professors or university personnel may attribute the student’s  absences to a lack of interest or motivation, underestimate the severity of  the situation, and miss an opportunity to help that student. The panel also  said a public awareness campaign could deepen the public’s  understanding of autism and help people think about how they can better  support people with ASD. The panel suggested educational sessions that  describe the diversity among people with autism, promote tolerance, and  help create a safe environment to support youth on the spectrum.
In addition to the wider public, the panel said that professionals who  interact with people with autism need education and training about  autism. The panel cited a wide range of fields—such as health care,  justice, education, transportation, mental health, public safety, and public  services—whose members need to understand autism characteristics  and be prepared to support them. Specifically, the panel noted that, while  youth with autism have clear needs for supports, people should not make  assumptions about an individual’s competence based on a single  characteristic of autism. The panel told us that some people may base  their assumptions about the capabilities of an autistic youth on the youth’s  ability to communicate verbally. For example, people may erroneously  equate a lack of verbal communication skills with an inability to make  decisions or express preferences, while assuming that those autistic  youth who can speak have no communication issues and no need for  supports. Consistent with this, the panel noted that those people closest  to youth with autism should foster high expectations when preparing them  for adulthood. For example, one panelist said that parents and teachers  should expect youth to learn to be more independent, noting that people  often adopt a risk-averse approach to teaching autistic youth, coming to  the rescue when someone does not succeed at a task. This can create a  “learned helplessness” and missed opportunities to teach the valuable life  skill of perseverance. Rather, the panel said that youth should begin  building self-advocacy skills—identifying and asking for what they need— in middle and high school. For example, one panelist said that youth  should learn to identify their sensory, social, and communication  differences and strengths.
The new paradigm would include fostering a better understanding of the  potential of youth with ASD, according to the panel. Specifically, the panel  told us that recognizing the strengths of individuals with ASD can greatly  improve their opportunities, while focusing on the difficulties associated  with autism may limit them.
On Contributing to Society   These aren't just people who are service users and need things all the time. These are  people who can contribute to society, their campus communities. And how do we create  opportunities for them to be leaders, to be mentors, as part of the service delivery  process?
The panel said some characteristics of autism, such as a tendency  toward repetitive actions and a preference for routine, could be an  advantage in the workplace. For example, the panel told us about a youth  who enjoyed stacking boxes—an interest that translated into a job skill  needed in the community’s home improvement store—and another young  man whose intense focus and interest resulted in encyclopedic  knowledge of heating, ventilation and air conditioning. The second youth  became the most reliable worker in his internship and reported to work  early every day. The panel discussed a national financial services  company that initiated an agricultural program for employing youth with  disabilities, including autism, because the company saw their comfort with  routine and reliability as strengths. The panel also discussed a national  retailer that hired workers with disabilities, including autism, and found  that those workers had lower job turnover rates and were just as  productive as workers without disabilities.
The panel noted that better inclusion of people with ASD could help  reduce the stigma associated with autism and reduce bullying, which the  panel suggested occurred frequently among youth with ASD. The panel  told us that some youth miss out on supports, including helpful medical  devices, that may be available to them because they fear being  stigmatized if they disclose their autism. A greater understanding of  autism in general could decrease the sense of stigma, similar to the way  that physical disabilities are becoming less stigmatized over time. In  addition, people may be less likely to make flawed judgments or act on  stereotypes if they have an increased understanding and acceptance of  the different interaction styles characteristic of individuals with autism.  The panel noted that one way to reduce bullying was to implement  school-based anti-bullying training, that focused on respect and  acceptance from pre-kindergarten to 12th grade. Greater public  awareness of autism could also improve the safety of autistic youth when  they are in the community. For example, the panel discussed the  prevalence of abuse, including sexual abuse, among youth with autism  and noted that increased awareness of the risks to autistic youth in the  community would increase their safety.
On Benefits of Community Awareness and Integration  If someone abused our son, we wouldn't know. He cannot tell us. …The best safety and  security system is more eyes and ears. And so the more people that are coming and  going, the more eyes and ears, the more than we are part of community and integrated  into community, the better off we are and the safer we will be.
Additionally, the panel described the benefits of police officers knowing  how to appropriately aid an autistic person who is acting erratically, as  well as teaching youth with autism how to interact with the police. The  panel said that because some youth with autism may not appropriately  respond to verbal commands, increased awareness of autism among  police officers was critical given the potential consequences of  miscommunication—such as incarceration or violence.
section_title: Agency Comments
paragraphs: We provided a draft of this report to Education and HHS for comment.  They provided technical comments, which we incorporated as  appropriate.
As agreed with your offices, unless you publicly announce the contents of  this report earlier, we plan no further distribution until 30 days from the  report date. At that time, we will send copies to interested congressional  committees and to the Department of Education. In addition, the report  will be available at no charge on the GAO website at http://www.gao.gov.
If you or your staff have any questions about this report, please contact  me at (617) 788-0580 or nowickij@gao.gov. Contact points for our Offices  of Congressional Relations and Public Affairs may be found on the last  page of this report. GAO staff who made key contributions to this report  are listed in appendix IV.
section_title: Appendix I: Objectives, Scope, and Methodology
paragraphs: This is the first in a series of reports on youth with autism transitioning to  adulthood. In this report, we focus on describing the needs of transitioning  youth with Autism Spectrum Disorder (ASD). A second engagement will  examine the services provided to transitioning youth with ASD and any  challenges they may face obtaining them.
subsections: section_title: Objectives
paragraphs: To describe the needs of transitioning youth with ASD, we addressed the  following questions:  1.  What services and supports do transitioning youth with autism need to  attain their goals for adulthood?  2.  What are the characteristics of needed services and supports?  3.  How can youth with autism be fully integrated into society?
section_title: Choosing Panelists
paragraphs: To answer our research questions, we convened a roundtable discussion  on March 3 and 4, 2016. We selected a total of 24 panelists, including:  service providers, including teachers, developmental pediatricians,  transition specialists, behavioral therapists, and leaders of programs  providing employment supports, college supports, legal  representation, social supports, and residential supports, among  others; employers who provide supports for workers with autism; parents of youth and adults with autism with a range of ages and  support needs.
Most panelists fell into more than one of these categories. We chose  panelists based on the following:  their expertise about autism, as measured by their personal or  professional experience with autism or participation on relevant  Boards of Directors or the Interagency Autism Coordinating  Committee;  recommendations from others with subject matter knowledge,  including researchers and organizations we interviewed during our  background research as well as other panelists; and backgrounds and perspectives reflecting the diversity of the autism  community, including variations in service areas, income, race,  gender, geographic location, and urbanicity. We considered panelists’  personal backgrounds as well as the autistic populations they worked  with.
The full list of panelists is included in the agenda in appendix II.
section_title: Panel Topics of Discussion
paragraphs: We asked the panel about the services that transitioning youth across the  autism spectrum need to help them achieve five goals for adulthood:  1.  Postsecondary education.  2.  Employment.  3.  Maximizing independent living.  4.  Health and safety.  5.  Maximizing community integration.
We chose these goals because they were either listed in the transition  planning requirements for high school students receiving special  education services (goals 1, 2, and 3)  or described by potential panelists  in pre-selection interviews as particularly important (goals 4 and 5).
To guide our discussion, we asked the panel the following questions  about each of the five goals:
What autism characteristics impede or facilitate achieving the goal?
What services/supports/institutional changes help youth manage or  leverage those characteristics?
What happens when youth receive each service/support?
What happens when they do not receive it?
Have we discussed youth with the greatest, moderate, and least  needs for each service/support?
Are there special considerations for young women, minorities, low- income youth, rural youth, or other groups?
We asked the panel to describe services ideally needed for a successful  transition to adulthood, regardless of what services may currently be  available or feasible. We did not verify the accuracy of the information  they provided. The panel also pointed out that many of the services  needed to support youth with ASD may also support youth with other  disabilities. While we focus on how these services would particularly  address characteristics associated with autism, the panel also cautioned  against singling out autistic youth unnecessarily.
Appendix II includes the agenda for the panel including a list of invited  panelists. Of the 24 panelists, 2 were not present at the actual event,  including an autistic individual who does not use spoken language. We  interviewed them afterward to obtain their thoughts on the same topics  covered during the panel and included this information in our analysis.  We asked panelists to provide comments on a draft of this report, which  we incorporated as appropriate.
section_title: Analysis of Information from the Panel
paragraphs: We conducted a content analysis of the transcript of the 2-day event as  well as documents the panelists submitted in writing to clarify and support  information discussed during the panel meeting. Specifically, we used the  NVivo qualitative analysis software to classify each sentence into one or  more categories, depending on whether the speaker was discussing:
One or more of the five goals for adulthood;
One or more services; or
One or more of several cross-cutting needs—issues that applied  across services or goals.
We identified these categories by creating lists of all the services and  cross-cutting issues the panel mentioned at least once during the  discussion or in the documents. For brevity and organizational purposes,  we then grouped them into broader categories based on their relatedness  and our understanding of autism services garnered from literature and  interviews. This process resulted in 14 broad categories of services,  which are listed and described in appendix III, and 13 categories of  cross-cutting needs: public awareness of autism;  service provider awareness of autism;  sufficient access to supports; adequate and flexible funding;  coordination among service providers;  staff quality and training; equity issues for specific groups; and other cross-cutting issues.
Two analysts categorized the sentences in NVivo. To ensure consistency,  both analysts classified the same sample of the transcript and a reliability  analysis determined that they chose the same categories over 95 percent  of the time. Each analyst also spot checked the other’s work. After  categorizing the sentences, we analyzed the text in each category to  identify the emerging themes. We attribute these themes, as well as  specific examples given for illustrative purposes, to “the panel” throughout  this report.
For convenience, we use the term “youth” in this report to describe  individuals aged 14 to 24, the age range when they may be eligible for  transition services, depending on their state. This age range is in keeping  with our previous work as well as other federal programs and  organizations. During the transition years, youth may receive services for  children, adults, or both.
section_title: Appendix II: Agenda and List of Invited Panelists
section_title: Appendix III: Services and Supports for Transitioning Youth with Autism Identified By the Panel
paragraphs: The panel identified 14 broad categories of services and supports that  may help youth with Autism Spectrum Disorders (ASD) attain the goals of  education, employment, health/safety, independent living, and community  integration as they transition to adulthood. Table 6 shows which services  may support each goal, according to the panel. Figures 3 through 16  illustrate the same information, as we describe each service.
section_title: Appendix IV: GAO Contact and Staff Acknowledgements
subsections: section_title: GAO Contact
section_title: Staff Acknowledgements
paragraphs: In addition to the contact named above, Nagla’a El-Hodiri (Assistant  Director); Brittni Milam (Analyst in Charge), Sandra Baxter, Farrah  Graham, and Walter Vance made key contributions to this report. Also  contributing to this report were: James Bennett, Holly Dye, David  Forgosh, Flavio Martinez, Daniel Meyer, Sheila McCoy, Arthur Merriam,  Vernette Shaw, and Adam Wendel.