Brian Flagg & Deborah Gee-Tritschler, ÂŠ 2011 Successfully Transitioning ASD Students to College and to the Workplace Colleges need to prepare Autism Spectrum Disorder students for employment. The number of students with Autism Spectrum Disorder, or ASD, entering colleges in the U.S. will increase dramatically in the foreseeable future and colleges are ill-prepared to provide the needed programs and support services to enable ASD students to successfully transition to the work environment. Government educational standards at the national, state or local level do not exist, while it is governments that bear the burden of unemployed or underemployed ASD individuals. ASD students leave behind the Individual Education Plan, or IEP, from high school and enter college with no plan and no standards or policies in place to develop a plan. Unless action is taken to develop programs that better transition ASD students to the workplace, ASD graduates will continue to be unemployed or underemployed, placing unnecessary burdens on societyâ€™s already overtaxed programs, while skilled jobs go unfilled. ASD students need to be identified at an appropriate and early time in high school to develop a college-track IEP, in cooperation with a local or state college, the local or regional workforce center, and a local or regional corporation, that includes workplace development and workplace experiential components. Supporting programs must be in place at the college-level to ensure a successful transition and implementation of the college-track IEP. The increase in the number of students with ASD entering colleges in the U.S. will likely mirror the overall increase in the prevalence of ASD in the U.S. population. The prevalence reported in studies in 2001 showed a rate of about 4 cases in 1,000 subjects, whereas data just six years later, reported in studies in 2007, showed a nearly 40% increase to 6.5 cases in 1,000 subjects. Data reported just 2 years later, in 2009, showed another 40% increase to 9 cases in 1,000 subjects. This significant increase in reported cases led to the questioning of the validity of the measurement methodology and therefore led the Centers for Disease Control, CDC, to evaluate its methodology for determining prevalence. The CDC published a study in 2010 with the aim to answer the question of whether different definitions of ASD or more of a focus on diagnosing developmentally delayed children with ASD was driving the huge increase in reported numbers. However, the study concluded that the CDC tracking system is likely not over-estimating the prevalence of ASD in the general U.S. population. One can therefore discern that the U.S. population of children is witnessing a dramatic increase in ASD prevalence. Clearly this increase will be felt in time by colleges and universities across the U.S.. The latest study population, for the studies conducted in 2009, were children at the age of 8 years old, and previous studies included children at a variety of ages. The study populations are therefore just beginning to reach college age and therefore It is clear that this significant increase in the childhood prevalence of ASD has already begun to impact colleges, and will continue to affect colleges at an increasing rate. It is recommended by many professionals that service ASD students that they not
take a full course load, and hence these students are in the college or university for a longer period of time than the typical student. This further increases the problem of the number of ASD students in a college or university setting that require appropriate support services. Colleges are ill-prepared to provide the necessary supports and services needed for the fast-increasing number of students with special needs associated with ASD to be successfully transitioned to college from high school, participate in a successful college experience, and transition from college to the workplace. Several universities have programs in place to aid students in their transition from high school and provide oncampus supports geared toward self-help, independent living, and social skills. The costs of some of the programs are included within the tuition, and the costs associated with others are not. However, there are very few colleges or universities that offer any comprehensive program for ASD students, and for those that do the numbers they service are small and can be cost-prohibitive due to the need for a low ratio of staff to ASD students. Furthermore, these programs do not partner with high schools, and thus the transition support is a one-size-fits-all approach. There is no front end of the transition to prepare future students for the college experience. This is inherently a challenge for major universities; they attract students from across the U.S. and cannot possibly partner with each and every high school to begin transition when it is most needed. Given the significant impact that unemployed individuals with disabilities have on social government programs at the local, state and federal level, it is difficult to understand why standards and regulations are lacking for ASD students in public colleges. At a federal level, the Individuals with Disabilities Education Act (IDEA) governs how states and public agencies provide early intervention, special education and related services to more than 6.5 million eligible infants, toddlers, children and youth with disabilities. From the standpoint of high school students, IDEA dictates requirements for the Individualized Education Program, or IEP, in terms of how it is developed, how it is administered, and how outcomes are measured during a review process. The law also dictates the makeup of the IEP team, how and under what circumstances the team meets, how parents can appeal decisions of the IEP team, procedural safeguards, and a host of other operational characteristics associated with an IEP and supporting processes. Most important, IEPs include classroom or other modifications a school needs to provide for student with a recognized disability in order to receive an appropriate education. Colleges and universities have no such requirements under IDEA. There is no IEP, no IEP team and no IEP safeguards, and typically there are no modifications to college classes or programs allowed. In short, standards, regulations, and safeguards do not exist for ASD students once they leave the high school setting for college. In general, at present, colleges do not have the incentives or funds necessary to develop 2
appropriate ASD programs without government regulation or intervention. It is clear that a post-secondary IEP, with appropriate supporting standards and regulations are crucial to the adoption of necessary programs. Employed ASD individuals are not able to afford the direct costs associated with their condition. Studies show the overall incremental direct and indirect costs associated with supporting an ASD individual from ages 18-62 is $2.3 million, or approximately $52,000 a year. Direct costs alone, costs that are visible to the ASD individual, exceed $22,000 a year. This is particularly troublesome given the fact that in the first two years following high school graduation only 14% of ASD individuals are employed, and that number does not improve, moving up to 15-20% overall. Additionally, a high percentage of the 15-20% with an ASD diagnosis that are employed, are underemployed. It is therefore clear that the current state of ASD employment is not a bright one. The income generated by this level of ASD employment can in no way support the overall costs of supporting the ASD population. In most cases it is the government; at local, state and federal levels that need to make up the difference, nearly $50 billion a year. If nothing is done to address the transition of ASD students from high school to college, not enough programs are put in place and funded to an appropriate level to support ASD students that enter college and not enough college programs are put in place to properly prepare ASD students for the workplace, the situation will only worsen. Every day, nearly 60 new cases of ASD are diagnosed, adding another $1 billion a year to the cost of care for the ASD population. As the number of cases is increasing every year, the cost of care and burden on government programs will continue to increase. Furthermore, college programs will be overwhelmed, and ASD students that enter the programs will quickly exit and will likely not continue to pursue their college education. Any college or government scholarship monies these students had used will be wasted, and any loans unlikely to be repaid. Skilled jobs, that typically could be performed by ASD individuals in I/T, accounting and other areas will go unfilled. At the end of 2011, for example, unemployment in the information technology sector was less than 4%, the same unemployment rate for accountants. The demand for these jobs is high, and there is a lack of skilled workers to fill them. If colleges do not embrace ASD students as the ASD percentage of the population of college students increases, enrollment will decrease, especially at two-year colleges which is where many ASD students begin their post-secondary education. Colleges that have the best programs will see more students applying for matriculation, whereas other colleges will see fewer. Those with the best programs will either limit the number of entering students into their ASD programs or see the programs overwhelmed.
A number of actions need to be taken to ensure that ASD students receive a proper transition from high school, receive the necessary supports once in college, and receive the transition to the workforce that will relieve much of the burden on social government programs. High schools can take several actions to assist in the transition of ASD students to a college setting. An important action is to identify ASDs with college aptitude at the right point in their high school education. This is counter to the current mainstream thinking; that every disabled child should be developed to their full potential without preconceived notions as to the level of that potential. The IEP process does not distinguish between college applicability as a future or leaving high school and going directly into a trade or other supported work-oriented role. Many parents would balk at such a distinction being made. Parents of disabled children are typically used to fighting for their child’s rights, fighting for inclusion, and fighting for acceptance into the family, the church and other social organizations, as well as schools. They want to fight for the best for their child, without the label of ‘college-material’ or otherwise. The fallacy is in the binary thinking, that the decision to be labeled as ‘college-material’ or otherwise encompasses all students with a disability. This need not be the case. Pre-college aptitude testing currently exists, notably in the preliminary scholastic aptitude test (PSAT), and that test, or a similar test, could be provided as an option to ASD students either before or during the fall semester of their senior year. Unfortunately, relying on standardized testing can be problematic for ASD students. They usually have very pronounced divergence in skills across the academic spectrum, especially in the areas of social intelligence, and as a result the standardized tests usually present a rather poor accounting of ability. Much more research is needed in this area, but points to the fact that a partnership is needed between the college and high school so that the results of the standardized tests are understood. Once the testing is complete, the results facilitate a tailoring of the IEP to better prepare the student for college, perhaps by focusing on remedial classes that would be required in college based on the results of the testing. This action could be taken with relatively little impact to existing programs, rules and regulations. Going one step further, following pre-college testing a student could choose a college or university and the student and high school could partner with the college to further develop, refine and implement a college-track IEP, an IEP that would be more focused on particular requirements for the college and for the student’s prospective area of study. A current Federal TRIO program, Upper Bound, seeks similar goals. The program provides opportunities for participants to succeed in their pre-college performance and in their higher education pursuits. The goal of Upward Bound is to increase the rate at which participants complete secondary education and enroll in and graduate from institutions of postsecondary education.
The Federal TRIO programs are comprised of Talent Search (TS), Educational Opportunity Centers (EOC), Upward Bound (UB), Student Support Services (SSS), and the Ronald E. McNair Postbaccalaureate Achievement (McNair) programs. These programs not only provide transitional support but ongoing support as well. However, to be eligible for the TRIO program, students must be either from low-income families or be potential first-generation college students. The program requires that two-thirds of the participants in a project must be both low-income and potential first-generation students. The remaining one-third must be either low-income, first-generation college students, or students who have a high risk for academic failure. It is clear that the TRIO programs serve a diverse, but mostly low-income, student population. ASD students, particularly those that do not meet low-income limits, find few remaining resources after all others meeting eligibility criteria have been served. Therefore, as the aims of the TRIO programs are well-constructed and serve a population of disabled individuals very well, a focused effort is needed given the proportion of ASD students in the educational pipeline. Of particular note is the fact that the Federal appropriation for TRIO programs declined 3.1% from 2010 to 2011. This troubling trend may well continue given the focus on the Federal budget deficit. Colleges and Universities with current TRIO programs will need to be prepared to increase their disabilities budgets to make up the declining Federal appropriation, and even increase funding to these programs in the future to handle the increasing numbers of ASD students. Institutions without TRIO programs are already behind in terms of attracting ASD and other students with disabilities and will either need to decide to put ASD bridge and support programs in place, or decide they do not want to pursue that student population. At the other end of the college experience is the preparation and transition from college to the workplace. There are two alternatives to consider; ASD students that begin in a 2-year college that need to either be prepared for a 4-year college or university or for the workplace, or ASD students that begin in a 4-year program and must prepare for the workplace. Therefore, the student in a 2-year program has a decision to make by the end of their third, or what would logically be their third, semester. The two-year college also has a decision to make regarding the services it needs to provide relative to workplace transition or transition to further education. Likewise, the four-year college needs to be prepared for the student transitioning from a two-year college, and gear the program differently than for the student transitioning from high school. The decisions are somewhat complicated by the fact that typically ASD students take less than a full course load and therefore the two-year and four-year planning horizons are atypical. Transitioning from a two-year to four-year college program of study should be designed to be consistent with the transition from high school to the two-year college. In other 5
words, the ASD student needs to work with the two-year college placement office and a four-year college to design a successful transition, a transition that should begin as soon as reasonably possible. The four-year college will need to be able to handle incoming transitions from high school differently than those coming from two-year programs. The four year college will have at least three years to work with an incoming freshman ASD student prior to executing on a workforce preparation plan, but may have only one year to work with an incoming two-year college ASD student. In either case, building upon the partnering theme for transition enumerated to this point, the two-year or four-year college will need to partner with companies willing to provide internship opportunities and post-graduation full-time employment opportunities. This partnership can be facilitated in conjunction with the local or regional workforce center or employment center. These employment centers have the resources to provide necessary career assessment and counseling support in addition to being networked into local or regional employers, and can identify internship and employment opportunities appropriate to the ASD student.. Any transition plan would be well enhanced by the inclusion of the employment center. ASD individuals typically have deep skills in specific areas, such as attention to detail and working with numbers, and deficits in other areas, notably social intelligence. Transition programs need to focus on social skills important in a workplace setting, but also should work with companies on positions that do not typically require a great deal of social workplace interaction. A Danish company, Specialisterne, part of the Specialist People Foundation, recognized the skills that many ASDs have to perform meticulous work that many find tedious; software testing. Specialisterne states that “Our absolute strengths are in working areas requiring a high degree of attention to detail, strong logical and analytical thinking, meticulous, and 0-fault tolerance”. “We see ASD as a particular strength...”. The company has reached out to form local companies in the United States, Austria and Switzerland. The Specialist People Foundation, in November of 2011, announced Specialisterne Foundation Inc. was formed in the U.S. and also announced that Specialisterne Minnesota would be a copy of the Specialisterne business model and would be implemented in Minnesota in 2012. According to the news release, Tim Hanson, local Specialisterne coordinator, “I believe that Minnesota is the perfect entry point for Specialisterne in the US. The business climate here is healthy and we are home to a large number of Fortune 500 companies,” says Hanson. “The social climate here is also encouraging, as Minnesota is the national leader in providing opportunities and services to individuals with special needs. Last but not least, the employment climate is ripe with a significant need for skilled technical employees.” Most cities and colleges will not be as fortunate to have a company specifically devoted to employing ASD individuals and will need to partner with companies willing to provide the internship and post-graduation opportunities. 6
Companies wishing to partner with post-secondary schools to provide internships and post-graduation employment will need assistance in the development of employment situations that limit social interaction expectations and provide meaningful accommodations or modifications in the workplace setting, and appropriate supports to enable the ASD intern or employee to be successful. This will take an effective partnership between Human Resources function and leadership in the line organization at the company. Of benefit to companies wanting to partner to provide employment opportunities to ASD students and graduates would be standard training and program templates for their Human Resources and line functions. The training and program templates should assist company organizations in the development of employment objectives, measurement approaches, mentorship supports and resources needed for the ASD intern or employee. It is clear that a managed support chain is required to successfully move the ASD student through high school, 2 year college, 4 year college, internships and full-time employment. The key word is managed. There are typically a myriad of programs and processes involved in a comprehensive chain covering many years and multiple institutions, and a managed approach is needed. Furthermore, the typical ASD student is not skilled in social settings, and is not skilled in self-organization or self-direction. Without a managed chain of support, the ASD student is at risk of becoming yet another statistic in the population of the underemployed, unemployed or unemployable. The Federal and state governments are taking an incentive-based approach to creating programs that have as their aim to make the college experience achievable for a segment of the population, primarily low-income. However, these are incentive based, and the very real question is whether the programs will continue once the incentives are removed. In the absence of standards for the support of students with ASD engaged in post-secondary education under IDEA, state governmental organizations or accreditation bodies need to develop standards, processes and safeguards for ASD college students. In the meantime, market forces should drive needed changes in attention to servicing students with ASD. There are several nationwide organizations devoted to advocacy for individuals with ASD, including Autism Speaks and the Autism Society. Through advocacy at the state and national level, through awareness and education, and through incentive-based funding, these organizations can, and in many cases are already working to bridge the gaps in the managed support chain and drive successful employment outcomes. 1. Summary of Autism/ASD Prevalence Studies http://www.cdc.gov/ncbddd/autism/documents/Autism_PrevalenceSummaryTable_2011.pdf
2. Avchen, R., Wiggins, L.D., Devine, O. , Van Naarden-Braun, K., Rice, C., Hobson, N., Schendel, D., & Yeargin-Allsopp, M. (2010). 3. Ten Impressive Special College Programs for Students with Autism http://www.bestcollegesonline.com/blog/2011/05/25/10-impressive-special-college-programsfor-students-with-autism/
4. Building the Legacy: IDEA 2004 http://idea.ed.gov/ 5. Ganz, M.L., The costs of autism, in Understanding Autism: From Basic Neuroscience to Treatment, S.O. Moldin and J.L.R. Rubenstein, Editors. 2006, Taylor and Francis Group: Boca Raton, FL. 6. Ganz, M.L., The lifetime distribution of the incremental societal costs of autism. Arch Pediatr Adolesc Med, 2007. 161(4): p. 343-9. 7. Mank, D.M., National implementation of supported employment, in Supported Employment: Models, Methods, and Issues, F.R. Rusch, Editor. 1990, Sycamore: Sycamore, IL. p. 289-300. 8. Jacobson, J.W., J.A. Mulick, and G. Green, Cost-benefit estimates for early intensive behavioral intervention for young children with autismâ€”General model and single State case. Behavioral Interventions, 1998. 13: p. 201-226. 9. Office of Post-Secondary Education, http://www2.ed.gov/about/offices/list/ope/trio/index.html
10. The Specialist People Foundation http://specialistpeople.com/ 11. Specialisterne Now in the USA! http://specialistpeople.com/specialisternenews/specialisterne-now-in-the-usa/
12. Autism Speaks http://www.autismspeaks.org/ 13. Autism Society http://www.autism-society.org/ 14. Going Through College with Autism: Hints and Tips, From Lisa Jo Rudy, former About.com Guide, Updated December 02, 2007. http://autism.about.com/od/transitioncollegejobs/a/mjohnsontips.htm
15. Ozonoff, Sally, Dawson, Geraldine, McPartland, James, A Parents Guide to Asperger Syndrome and High-Functioning Autism: How to Meet the Channlenges and Help Your Child Thrive, The Guilford Press, New York, NY 2002.