Issue 6 Online Extra Autism The Clinical View: A Tsunami of Need By Ernst VanBergeijk, Ph.D.

Ernst Vanbergeijk.  Photo by Ari Mintz.  3/25/2011.
Ernst Vanbergeijk. Photo by Ari Mintz. 3/25/2011.

This article is a companion piece to The New Idealist Issue Six: The Autism Issue which you can download here.

Please note: This article was originally published in The New Idealist section of The Intelligent Review site in August 2014 before being transferred to this new site in July 2015.

Whilst some of the terminology of this article may cause distress to some autistic readers, please be aware this article has been included because the author makes some interesting points about soft skills training, work and education support for autistic students. We are also publishing it in order to highlight the ‘autism as a disorder and deficit’ approach of the clinical community. As The Autism Issue challenges this view, it is important this article is read in conjunction with the full issue here.

A Tsunami of Need By Ernst VanBergeijk, Ph.D., M.S.W.

With the advent of the DSM-IV in 1994, mental health practitioners and educators began to become aware of the pervasive developmental disorders which included autistic disorder and Asperger syndrome among other disorders. Autism was once considered a relatively uncommon disorder with approximately 1 out of every 10,000 children having such a diagnosis. Over the subsequent decades professionals have gotten better training and more readily recognize autism as a spectrum disorder affecting  1 out of every 68 children in the United States.

Our efforts have concentrated upon early diagnosis and intervention with empirically based interventions. In turn this has led to better outcomes for children on the autism spectrum. Just a generation ago the parents of children on the autism spectrum were told by experts to relegate their children to the care of large mental health institutions with no hope of an independent life outside the four walls of a state run hospital. Now, thanks to early intervention with research based techniques, these children and their families have hopes and dreams of college, work and an independent life.

The children born in the 1990’s who were diagnosed with autism are now coming of age and are entering colleges and the workforce. However, higher education and the social service system are not ready for the tsunami of need this will bring. In the United States children with any type of disability are protected by the Individuals with Disabilities Education Act, more commonly referred to as IDEA. IDEA guarantees the right of a child that has a disability, to a Free and Appropriate Public Education (FAPE). The student along with his or her family and school personnel develop an Individualized Education Program or IEP.

The IEP outlines goals for the child as well as accommodations for that child to help him or her optimize the ability to learn and reach those IEP goals. By the time the child reaches age 14 years of age, then a transition goal must be identified and by age 16 a concrete transition plan must be in place. The transition goals can include working and living in the community or going to college. Services are paid for through the local school district through the child’s graduation from high school or age 21- if the now, young adult does not graduate with his or her peers at age 18.

The transition from high school to post-secondary life is an exceptionally difficult time for young adults on the autism spectrum. The safety net of special education and its funding disappears once the student graduates from high school or reaches age 21. The unemployment rate in this population ranges from 55% to over 90%. The student may need to re-qualify for state services through offices of developmental disability services or state offices of vocational rehabilitative services.  The rules and regulations vary from state to state and services can be fragmented.

Education was a right under IDEA, but now individuals with a disability such as autism are protected by the Americans with Disabilities Act (ADA) in post-secondary educational settings. Students with a disability must be “otherwise qualified” to attend the university. College offices of disability services will offer a student with autism “reasonable accommodations” to level the playing field and insure that the student is not discriminated against receiving the benefits of the institution solely because of their disability. Education is no longer a right, however. It is a privilege. The student must self-advocate and self-identify in order to receive these services.

Many students on the autism spectrum have the academic ability to master the educational material. Their disability lies in the realm of executive functioning skills, (or meta-organizational skills), independent living skills, and navigating the unwritten rules of the social world.  Transition plans need to start much sooner than what is prescribed in the law under IDEA, particularly when it comes to the independent living skills. Independent living skills are complex behaviors that are made up of basic building blocks of behaviors that must be taught in the home as well as the schools (e.g. doing laundry or budgeting and banking).

Transition plans should include exposure to college courses, but more importantly college environments, which are completely different than the structure of high school environments while the student is still in high school. Every student should have paid employment opportunities prior to leaving high school, because research shows this is a predictor of post-secondary employment. Finally, families and educators ought to work together to maximize funding opportunities and chances for success for young adults on the autism spectrum by using IDEA funding for programming for the student, and when  appropriate-then sending a student on the autism spectrum to a U.S. Department of Education approved Comprehensive Transition and Post-secondary (CTP) program. These programs help individuals with intellectual disabilities, including those on the autism spectrum, to either transition into the world of work and independent living or transition into a college degree bearing program full-time. Some forms of federal student aid are available to qualified students in these programs.

At New York Institute of Technology our Introduction to Independence (I to I) and Vocational Independence Programs  (VIP) serve students with neurologically based learning differences including those individuals who are higher functioning on the autism spectrum.  Many of the IEPs we see focus upon preparing the student academically, but fail to realize students on the spectrum need goals and empirically based interventions in the areas of the acquisition of independent living, social and vocational skills. Consequently, we provide training in areas such as travel training, laundry, cooking, budgeting & banking, executive functioning skills and specifically vocational skills.

Regardless of whether a student is in the vocational sequence or the pre-degree sequence of the program, all students have a work placement in a competitive employment situation.  The rationale for the work requirement is that we know numerous students who were able to complete bachelor’s , master’s, and even Ph.Ds., but were unable to secure and sustain employment. The teaching of the soft employment skills is critical to the individual’s success. Furthermore, students on the spectrum also often need help with learning and implementing proper nutrition and exercise in their lives as well as learning good sleep habits. This often means setting regular bed times and limiting their use of electronics two hours before bedtime.

Where should families start looking for transition programs or colleges that are supportive of students with a variety of disabilities? Thinkcollege.net is a clearinghouse of information for students with disabilities seeking post-secondary education. This site will provide descriptions of programs for students with autism and other disabilities. The U.S. Department of Education has a Federal Student Aid website. If a student types in the search engine the phrase “intellectual disabilities”, it will then direct the reader to the home page of the Comprehensive Transition and Post-secondary (CTP) programs. Included on this page are not only definitions and eligibility requirements, but also the types of aid available to students with intellectual disabilities including autism, but also provides the most up to date list of CTPs in the country. Currently there are only 30 colleges out of the 7,600 institutions of higher education nationally that have approved programs.

About the Author

Ernst VanBergeijk is the Associate Dean and Executive Director, at New York Institute of Technology Vocational Independence Program (VIP). The Vocational Independence Program is a U.S. Department of Education approved Comprehensive Transition and Postsecondary (CTP) program.  Dr. VanBergeijk also administers Introduction to Independence (I to I), a seven week summer college preview program for students ages 16 and up.

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