Autism Beyond High School: Are We Ready?
An increasing number of children with autism spectrum disorders (ASDs) will be transitioning to adulthood over the coming years. Are providers of adult services ready to accommodate them? What challenges await those who want to make certain that adults with ASD have the best life and outcome possible?
When a child with an autism spectrum disorder (ASD) walks through the doors of a U.S. public school for the first time, his or her parents are also entering an unfamiliar world. They have to learn quickly about the special education law known as the Individuals with Disabilities Education Act (IDEA), individualized education programs (IEPs), inclusion, and assessments. They often claw their way up a steep learning curve, becoming expert in their rights and responsibilities and how to get the best services and help they can for their child.
When that child graduates from high school, or ages out at age 21, IDEA no longer applies and the services it once provided disappear. Parents face a new set of rules, and a new learning curve. While services provided to children under IDEA were entitlement-based, the services provided to adults by a hodgepodge of state and federal programs are eligibility-based. A person has to apply and demonstrate that he or she is eligible for services according to a specific program's requirements. 1,2
In this article, we briefly explore some of the programs available to adults with ASD who qualify; the small amount of research on provision of adult services available so far; and efforts by families and others to improve the prospects of adults with ASD.
Adult Programs and Services
The majority of individuals with ASD continue to depend on their families for support into their adult years.3,4 This is often the case even for some with Asperger's disorder or high functioning autism who, despite having no cognitive impairment, are far behind their peers in terms of social and emotional development.5
What are some of the programs families will be trying to access for their adult children?
Note: The names of these agencies may vary depending on your state of residence, but all states have these in some form or another.
Administration on Developmental Disabilities (ADD). This federal agency, operating within the U.S. Department of Health and Human Services, administers the Developmental Disabilities Assistance and Bill of Rights Act of 2000, also known as the DD Act. Their mission is "to improve and increase services to and assure that individuals with developmental disabilities have opportunities to make their own choices, contribute to society, have supports to live independently, and are free of abuse, neglect, financial and sexual exploitation and violations of their legal and human rights." 6 Each state has its own agency or council to provide services such as respite care, residential support, transportation, transition planning, and employment. For more information, see the ADD website.
Division of Vocational Rehabilitation (DVR). This is a federally funded employment-assistance agency for individuals with disabilities run by individual states. Programs focus on services such as career counseling and assessment; job search and placement help; job coaching and other workplace support; and assistive technology, such as special computer software or visual aids to be used in the workplace. A Google search for "Division of Vocational Rehabilitation" results in a listing for each state.
Supplemental Security Income (SSI). This program provides financial and other assistance to individuals who are disabled, blind, or age 65 or older and meet the requirement of very low income and asset levels. In some states, those who qualify for SSI automatically qualify for Medicaid.
Note that SSI is not based on the recipient's Social Security contributions or employment history. In other words, Social Security taxes do not fund SSI programs although the Social Security Administration administers them. For further information, visit the Supplemental Security Income website.
Medicaid. This is health care funded by federal and state governments. It covers both children and adults, including children and adults with disabilities such as ASD, who have low incomes and few assets. See the Centers for Medicare & Medicaid Services (CMS) Medicaid overview.
Special Needs Trusts. These trusts can provide financial support to an adult with ASD while still allowing him or her to remain eligible for government benefits that you can't access unless your income is very low.1 For example, a relative could leave money for the adult with ASD through the trust without causing loss of benefits and a need to spend nearly all the money before becoming eligible for benefits again. However, the rules for this type of trust are complex, so be sure to consult with an attorney who specializes in special needs law.
Protection and Advocacy (P&A) Systems and Client Assistance Programs (CAP). These federally mandated programs provide advocacy services for individuals with disabilities to guard against abuse and ensure accountability in health care, employment, housing, transportation, and the criminal justice system. For more information, including what information and services are available in your state, see the National Disability Rights Network website.
Research Questions and Current Debates
At this point, there is little solid information available about how many adults with ASD are receiving services in the United States, or to what extent those services are appropriate and helpful. "We are in critical need of information about the current landscape of long-term outcomes for all people with ASD across the spectrum," asserts the Interagency Autism Coordinating Committee in its Strategic Plan for Autism Research. "The lack of knowledge about adults with ASD and their lifetime support needs has repeatedly arisen as a critical issue when stakeholders are queried about their most fundamental concerns."7 To advocate at a high level for more or different services, or a different approach to providing them, concrete information about what is happening on the ground is crucial.
The Transition Process
There is growing evidence that the formal transition process, which public schools are supposed to facilitate as mandated by IDEA, and which sounds quite promising on paper, is not working well for students with disabilities. One group of researchers who conducted in-depth interviews with a small number of transitioning teens, as well as focus groups with their parents, found families to be deeply dissatisfied with the reality of the process. The students, who are supposed to be at the center of transition planning, played a minimal role, if any, while parents felt communication with the school was inadequate; that faulty assumptions were made about their children; and that there was a tendency to funnel them into traditional adult service programs whether these were appropriate or not. The researchers concluded that "these adolescents' and their parents' perceptions of the transition planning process that they experienced did not line up well with best practices and mandates."8
This may be even more the case for individuals with ASDs. A report from a national study on special education students followed over time -- the National Longitudinal Transition Study-2 (NLTS2) -- states that, when compared to children in other disability categories, children with ASDs are least likely to participate in transition planning in a meaningful way. Nearly 23% did not attend transition planning meetings at all and nearly 45% were present but barely participated.9 Meanwhile, researchers reviewing existing studies on this topic concluded that "transition planning and implementation is falling short of what the federal government intended for many with ASD."10 Clearly, there is much room for improvement in the transition process.
Services After Transition
What happens after the school system is left behind? Researchers at Washington University in St. Louis, also using data from the NLTS2 study, examined service use by more than 400 young adults aged 19 to 23 with ASD. They found a steep decline in the use of services following high school. For example, while 74.6% of high school students had been receiving speech therapy during an earlier phase of the study, only 9.1% of young adults were receiving such therapy despite the fact that more than 20% were nonverbal and likely in need of such assistance. There was a similar pattern for other types of services, including case management, mental health services, or medical evaluation and assessment services. Nearly 40% were not receiving any of these services at all, and the likelihood of receiving no services was particularly high among African Americans and those with low incomes.11
If continuing stimulation, education, and activity are crucial to best outcomes for adults with ASD, this total lack of services is likely to have negative consequences. This was illustrated by a study collecting data on 242 youth with ASD at five points over 10 years. The study showed that these individuals improved, in terms of autism symptoms and maladaptive behaviors, as they got older. The rate of improvement slowed down after they left the school system, however, and this was especially true for those who did not have an intellectual disability.12 In a related study, the same researchers found that young adults with ASD and at least normal intelligence were three times more likely to have no daytime activities compared with those with intellectual disability. They wrote: "Our findings suggest that the current service system may be inadequate to accommodate the needs of youths with ASD who do not have intellectual disabilities during the transition to adulthood."13
It may be that systems that have long served individuals with intellectual disability are ill prepared to meet the needs of those adults with ASD who have at least normal IQs but are socially impaired. Such individuals do not fit those systems' definition of what "disabled" is, or their model for provision of services, leaving high-functioning adults and their families with no appropriate services at all.
The Vocational Rehabilitation System
Accessing vocational rehabilitation (VR) services -- that is, employment-related services -- also may be challenging for adults with ASD. One U.S. study of more than 380,000 individuals receiving VR services, including 1,707 individuals with ASD, revealed that adults with ASD were more likely than those in other disability groups to be denied vocational services because it was believed their disability was too severe for them to benefit. On the other hand, more than 42% of those with ASD were competitively employed when their VR case was closed -- the highest rate for all the groups served. The not-as-good news was that they, together with individuals with intellectual disability, were much more likely to require on-the-job supports, which also made them more expensive to serve.14
A study at Kent State University resulted in similar findings. It showed that adults with ASD were one of the most successful disability groups in the VR system, with more than 40% obtaining employment. On the negative side, they were also working fewer hours and earning lower weekly wages than individuals in most other groups. This study was also able to document increasing pressure on the system, reporting that the number of adults with ASD in the U.S. VR system had increased 121% between 2002 and 2006.15
A related concern involves how many people with ASD successfully enter the VR system in the first place. After all, the studies just discussed are counting only people who made it into the VR system, not those who never did. Is the existing VR process manageable for most adults with ASD? In Adult Autism & Employment: A Guide for Rehabilitation Professionals, disability policy researcher Scott Standifer states: "The first emergent issue is that many traditional vocational rehabilitation practices are not only ineffective for people with ASD, but actively distressing to them…. One state VR agency recently documented a 90% drop-out rate for VR clients with ASD, most of whom never got past the vocational evaluation...."16 What is not yet known is why. Are high-functioning individuals dropping out when they discover the system assumes they are intellectually impaired? Are sensory sensitivities, anxiety, or other issues that often co-occur with ASD making the application and interview process unbearable? We do not yet know.
Another debate in the VR field focuses on the use of job coaches, who traditionally provide short-term instruction and support for employees with disabilities. Some argue that long-term job coaches are needed in order for workers with ASD to succeed -- a problem since there is no provision for such a thing in existing VR systems. Others argue that long-term job coaching fosters dependence and may lead to a failure to assimilate into the work environment. (Such concerns echo those about assigning classroom aides to children with ASD, long term.) Does a permanent job coach serve as an excellent resource not only for the employee, but also for other staff members who may be unfamiliar with ASD? Or does such a coach undermine an employee with ASD, preventing him or her from developing an independent working relationship with supervisors and coworkers? 17
Meanwhile, higher-functioning adults with ASD are asserting that they need job coaches to help them navigate the social complexities of the workplace -- a notion that may seem foreign to some VR professionals. Zosia Zaks, a VR professional who has high functioning ASD, puts it this way: "As a society we are missing out on far too much potential and talent because many autistic adults, particularly those like myself who have Asperger's syndrome, don't fit the typical profile of somebody who needs help. A lot of times, people will say, 'Wait a second. You can go to college. You can talk. What do you mean you need a job coach?' But it's precisely the pervasive social skills challenges that hold a lot of us back."18
Much more research on these and other issues is needed to guide development and delivery of effective adult services. Meanwhile, parents, professionals, and adults with ASD must advocate in the present, working for change even before much research is available to support their efforts.
Advocates on the Front Lines
It was parents and professionals who fought for major changes in attitudes, practices, and the law to transform the lives of children with ASD. They are again fighting for urgently needed changes in systems serving adults on the spectrum, joined by adults with ASD advocating on their own behalf.
One bewildering difficulty adults with ASD and their families face is that most of the agencies set up to oversee services for individuals with disabilities do not actually provide these services. This is quite a change from the way things worked while the person was in the school system, with its coordinated "IEP team" and centralized staff. Now, services themselves -- including housing, transportation, vocational assistance, and healthcare -- are often delivered by "service providers" or "vendors" who must meet certain standards before being certified by the responsible agency. A person who takes an adult with a disability shopping, helps them pay their bills, or arranges housing probably works for a nonprofit organization that has been approved by a state disabilities-focused agency.
Many of the services described by federal and state agencies, or the providers delivering them, sound promising. Regrettably, they are not always easy to access, even if a person is deemed eligible. Thanks to budget limitations and staffing shortages there can be a long wait to actually receive services. This situation can only worsen as the large population of children and adolescents with ASD reaches adulthood -- a number never before dealt with by these agencies and providers. "This is a looming crisis of unprecedented magnitude for adults with ASD, their families, and the ill-prepared and underfunded adult service system charged with meeting their needs," declares a recent report on the state of services for adults with ASD in the United States.19
Furthermore, many parents feel that their adult children with ASD are not getting the vocational, residential, and other services they require because existing programs do not "get" ASDs, saying that the providers are years behind school systems in their understanding of the condition and how to work with individuals on the autism spectrum. Asserted one parent of an adult with ASD, "Adults on the spectrum are like square pegs trying to be fit into round holes in programs that don't thoroughly understand and respect their autism."18
A particularly critical issue is that few people have been trained to work with adults with ASD. As Dr. Peter Gerhardt points out, professionals working with children on the spectrum must meet rigorous standards to become special education teachers, speech pathologists, or occupational therapists. Then, when the children turn 21, the necessary credentials to work with them become "a high school diploma, a driver's license, and a criminal background check."20 Being a group-home manager or a job coach is not a career, he notes, but the kind of job you take on the way to something better. "The U.S. Department of Health and Human Services' statistics from 2004, the last year from which these data were available, indicate that programs serving adults with developmental disabilities in general on an annual basis have a staff turnover rate of 50% and a vacancy rate of 10%. That's 60%," he says. "You can't run a McDonald's like that."
Determined parents and professionals, together with high-functioning adults with ASD, are now taking action to transform attitudes and understanding within systems serving adults. For instance, a group of such individuals in Baltimore, dissatisfied with the services available through existing providers, recently founded their own provider-agency, which they named Itineris -- Latin for "the journey." Their aim was to build an entire program of services, focusing particularly on employment, which would take the unique needs of adults all across the autism spectrum into account.18 To learn more, watch the Itineris video.
Another group of advocates worked toward the adoption of ASD-specific certification criteria for the Commission on Accreditation of Rehabilitation Facilities (CARF) International, an organization that certifies providers offering residential, behavioral health, and employment services. A given set of CARF certification standards usually applied regardless of what disability the people receiving services had. However, after vocal parents, frustrated by their children's inability to access general disability services, expressed their dissatisfaction, CARF established a separate category for ASD certification. Currently, 14 organizations in the United States have received this special certification, indicating they have met goals such as training staff to work with individuals with ASD and facilitating transitions from school to employment and community living.21
In another encouraging development, a number of universities are focused on building programs for adults with ASD in their communities. For example, Towson University in Towson, Maryland, has established a Center for Adults with Autism which offers social groups, social skills training, art, and fitness programs for adults with ASD while working to create greater understanding of ASDs throughout the university community.
Similarly, the Emory Autism Center Adult Services Program at Emory University in Atlanta helps adults with ASD with adaptive living skills, independent living arrangements, supported employment/education, social skills development and recreational opportunities.
Still, there is far too little in place to meet the needs of the coming tidal wave of adults with ASD. "There are some very good adult programs out there," says Dr. Gerhardt. "Unfortunately, they're just very, very, very few in number. When we look at the actual numbers [of children with ASD] that are coming through the system, it's very much like trying to use a turkey baster to drain a swimming pool."20
In summary, there is much urgent work ahead for adults with ASD, families, advocates, and researchers determined to ensure that adults on the autism spectrum have meaningful lives and best possible outcomes.
- Autism Speaks Transition Tool Kit -- This is an extensive guide to issues of transition for individuals with ASD, from mid-adolescence through young adulthood. Sections cover topics such as self-advocacy, community living, employment and other options, housing, and legal issues.
- Life Journey Through Autism: A Guide for Transition to Adulthood -- A guide to the process of transition, covering legal, financial, and personal aspects of this critical period of human development by the Organization of Autism Research (OAR).
- Autism in the Workplace -- Autism Speaks' Family Services highlights individuals with autism who are working as well as testimonials from their employers.
- Autism Works National Conference -- a website introducing a national conference on autism and employment and also offering a variety of resources.
- There are also numerous books about moving into adulthood as a person with an ASD, such as Jed Baker's Preparing for Life: The Complete Guide for Transitioning to Adulthood for Those with Autism and Asperger's Syndrome or Zosia Zaks's Life and Love: Positive Strategies for Autistic Adults.
- View an excellent series of videos on Need to Know on PBS about young adults with ASD and their future.
- Autism Speaks Family Services. (2011). Transition tool kit. New York, NY: Autism Speaks. Retrieved July 15, 2011.
- DANYA International, Inc., Organization for Autism Research, & Southwest Autism Research & Resource Center. (2006). Life journey through autism: A guide for transition to adulthood. Arlington, VA: Organization for Autism Research. Retrieved July 15, 2011.
- Billstedt, E., Gillberg, I. C., & Gillberg, C. (2011). Aspects of quality of life in adults diagnosed with autism in childhood: A population-based study. Autism: The International Journal of Research and Practice, 15(1), 7-20. View Abstract
- Seltzer, M. M., Shattuck, P., Abbeduto, L., & Greenberg, J. S. (2004). Trajectory of development in adolescents and adults with autism. Mental Retardation and Developmental Disabilities Research Reviews, 10(4), 234-247. View Abstract
- Lawrence, D. H., Alleckson, D. A., & Bjorklund, P. (2010). Beyond the roadblocks: Transitioning to adulthood with Asperger's disorder. Archives of Psychiatric Nursing, 24(4), 227-238. View Abstract
- U.S. Department of Health and Human Services, Administration for Children & Families, Office of Public Affairs. (2010). Administration on Developmental Disabilities fact sheet. Retrieved July 15, 2011.
- Interagency Autism Coordinating Committee. (2011). The 2011 Interagency Autism Coordinating Committee strategic plan for autism spectrum disorder research - January 18, 2011. Retrieved July 15, 2011.
- Hetherington, S. A., Durant-Jones, L., Johnson, K., Nolan, K., Smith, E., Taylor-Brown, S., et al. (2010). The lived experiences of adolescents with disabilities and their parents in transition planning. Focus on Autism and Other Developmental Disabilities, 25(3), 163-172.
- Cameto, R., Levine, P., & Wagner, M. (2004). Transition planning for students with disabilities: A special topic report of findings from the National Longitudinal Transition Study-2 (NLTS2). Menlo Park, CA: SRI International. Retrieved July 15, 2011.
- Hendricks, D. R., & Wehman, P. (2009). Transition from school to adulthood for youth with autism spectrum disorders: Review and recommendations. Focus on Autism and Other Developmental Disabilities, 24(2), 77-88. View Abstract
- Shattuck, P. T., Wagner, M., Narendorf, S., Sterzing, P., & Hensley, M. (2011). Post-high school service use among young adults with an autism spectrum disorder. Archives of Pediatrics & Adolescent Medicine, 165(2), 141-146. View Abstract
- Taylor, J. L., & Seltzer, M. M. (2010). Changes in the autism behavioral phenotype during the transition to adulthood. Journal of Autism and Developmental Disorders, 40(12), 1431-1446. View Abstract
- Taylor, J. L., & Seltzer, M. M. (2011). Employment and post-secondary educational activities for young adults with autism spectrum disorders during the transition to adulthood. Journal of Autism and Developmental Disorders, 41(5), 566-574. View Abstract
- Lawer, L., Brusilovskiy, E., Salzer, M. S., & Mandell, D. S. (2009). Use of vocational rehabilitative services among adults with autism. Journal of Autism and Developmental Disorders, 39(3), 487-494. View Abstract
- Cimera, R. E., & Cowan, R. J. (2009). The costs of services and employment outcomes achieved by adults with autism in the US. Autism: The International Journal of Research and Practice, 13(3), 285-302. View Abstract
- Standifer, S. (2009). Adult autism and employment: A guide for vocational rehabilitation professionals No. 2011). Columbia, MO: Disability Policy & Studies, School of Health Professions, University of Missouri. Retrieved July 15, 2011.
- Autism Works: A National Conference on Autism & Employment. (2010). Is short-term job coaching practical for autism employment? Autism employment experts debate the role of job coaches. Retrieved July 15, 2011.
- Itineris. (2010). Itineris: Introductory video. Retrieved July 15, 2011.
- Gerhardt, P. F. (2009, January). The current state of services for adults with autism. Paper presented at the Advancing Futures for Adults with Autism: Think Tank, New York, NY. Retrieved July 15, 2011.
- MacNeil, R. (2011, April 22). Autism now: Dr. Peter Gerhardt extended interview. PBS NewsHour. Retrieved July 15, 2011.
- Autism Works: A National Conference on Autism & Employment. (2010). Parent voices drove autism certification standards. Retrieved July 15, 2011.