Living With Autism: Preparing for a Lifetime

For a person without a disability, this dramatic change from the secure world of school to the uncertainty of adulthood can be stressful and challenging. For a person on the autism spectrum, this shift can seem even more complexand demanding. Transition planning helps ease the move from school to adulthood for students with ASD. Faced with similar fears, and building on the experience of the special education system, the general education community has adopted the school-to-work movement. Unfortunately, despite years of mandated transition planning and a continued interest in preparing students with ASD for real life, many continue to experience high drop-out rates, high unemployment, low wages, few job choices, limited relationships and restricted living options.

In addition, some leave school unprepared to handle simple daily routines such as paying bills, balancing a budget and maintaining an orderly living environment. This bleak outlook requires those involved in educating students with asd to systematically and seriously pursue effective transition planning.  So what exactly is transition planning? According to federal regulations, students who are beneficiaries of individual education programs (IEP) must have transition services outlined beginning no later than the age of 16. According to Osborn and Wilcox (1992), transition planning serves  several important functions, including:

• introducing the family and the student to the adult service system
• determining support required by the student to live, work and participate in the community as an adult
• identifying adult service system gaps and inadequacies, enabling transition team members to advocate for more appropriate services
• providing information to adult service providers about individual needs so that providers will not assume all people with disabilities have identical needs when  planning services and implementing programs
• providing information critical to determining appropriate IEP goals. 

Through the IEP, parents and educators can target skill development necessary for a smooth transition in many states, individual transition plans (ITPs) are used as the mechanism to guide transition activities. Interestingly, the general education community has developed a parallel format, referred to as individual career plans, which focuses on helping students without disabilities move from school to work. In some states, school districts write both career plans and itps for students with disabilities. The career plan focuses solely on work, while the ITP document becomes the mechanism to address the following issues:

• work/post-school options
• income support/insurance
• residential options
• transportation needs
• medical needs
• community recreation and leisure options
• maintenance of family/friend relationships
• advocacy/guardianship
• trusts/wills and long-term planning
• graduation or school exit date

Quite simply, the ITP should address  employment, home, friends, family, leisure and recreation opportunities, as well as long-term life planning. The desired outcome is that young adults with asd will enjoy a good quality of life. However, defining quality of life is subject to individual interpretation. To ensure the person’s long-term goals are met, the most important participant in the planning process is the person with ASD. Everyone should have the opportunity to choose leisure activities, job opportunities, personal schedules, living arrangements and so on. Involving the person with ASD in his own transition planning is called self-determination. self-determination refers to the obvious step of making your own life choices, setting personal goals and initiating a plan of action. As simple as this seems, determining your future requires certain skills, including the ability to:

• communicate preferences
• set achievable goals
• make choices
• manage time
• identify and solve problems
• learn how to access resources
• self-advocate (Wehmeyer, 1993/94)

A method for assisting in designing a vision and plan of action with the person is referred to as person-centered planning. This process provides the person’s support network with the opportunity to articulate a future vision with the person, and to clearly develop a plan of action for achieving this vision.  Once all involved have a common understanding of the person’s desired path toward adulthood, it is time to begin the formal process of planning and programming for the shift to adulthood. The ITP should focus on current and future goals, identify strategies for achieving identified goals, present a timeline for follow-up, identify responsible people or agencies for each objective, and clarify how various roles will be coordinated. Vocational goals and objectives also must be articulated in the IEP.

While the ITP document provides the format for careful planning and program development, there still is much to consider when preparing a person with asd for adulthood. Below are a few considerations:

• When choosing a curriculum or course of study,  encourage the student to make choices that both peak his interest and lead to a real job. Many times, areas of interest may not lead to feasible job options. in these cases, people are being prepared for a lifetime of dependency on social services or jobs that are not good matches.
• During the school years, skills can be taught within the context of the school curriculum, which will  promote  future success. competencies such as being organized, being prepared, completing assigned tasks, following directions and interacting with others are important work skills.
• Involve the person in curriculum options that will teach other important life skills, such as cooking, repairing items and handling personal finances.
• Encourage students with asd to become involved in extracurricular activities, school clubs and other social events to help build a network of support that can assist in accessing employment later.
• While still in school, pursue apprenticeship programs, volunteer positions or other options that will allow the person to gain experience in a real work environment. 
• Begin to build the person’s resume. These can be  prepared in various formats by using video, computer or portfolios that portray competencies.
• Gradually prepare the person for the nuances and social demands of the work place. some behaviors are clearly against the rules of most work environments. Other behaviors will serve to annoy co-workers and may result in termination. Teach behaviors appropriate to specific places of employment while in the natural setting.
• Teach the person appropriate hygiene and dress for specific work settings.
• Instruct about social interchanges around appropriate topics that can assist with office small talk and during job-related discussions.
• Initial preparation of the job site can avoid unnecessary difficulties and promote long-term success. Present information in a manner that is respectful of the person and of his co-workers.

Although co-workers will serve as the most efficient and effective method of long-term support, a job coach or other support personnel may need to be available to problem-solve and assist the person in adjusting to the job. It may be helpful to identify a mentor to whom the person can readily turn for assistance and advice.

When examining job options, consider safe and efficient means of transportation. If public transportation is preferred, supply the person with routes, schedules and other relevant information. If not, creative options such as hiring drivers, arranging taxi service or sharing travel expenses with co-workers in exchange for transportation can be pursued. The availability of transportation is critical to independence. People with ASD make important contributions to society, but only when they are prepared and supported. As family members and professionals, our job is to guide people with ASD in determining a future that is both meaningful and of interest to them. With careful planning, people can leave school prepared to handle a lifetime of struggles and successes.   References

Baker, J. (2006). Preparing for life: The complete guide for transitioning to adulthood for those with autism/Asperger’s syndrome. arlington, tX: future horizons, inc.  Dubin, N. (2006). Asperger syndrome and employment: A personal guide to succeeding at work. London: Jessica Kingsley Publishers. (DVD). (Available at  http://www.jkp.com/catalogue/book.php/isbn/9781843108498).

Grandin, T., Duffy, K., & Attwood, T. (2004). Developing talents: Careers for individuals with Asperger syndrome and high-functioning autism. Shawnee  Mission, KS: Autism Asperger Publishing Company.  Grandin, T.,  Barron, S. (2005) The unwritten rules of social relationships.  Arlington, TX: Future Horizons, Inc.   Hawkins, G. (2004). How to find work that works for people with Asperger Syndrome.  London: Jessica Kingsley Publishers. 

Howlin, P. (1997). Autism: Preparing for adulthood. Oxford, UK: Routledge Taylor &  Francis Group.

Howlin, P. (2000). Outcome in adult life for more able individuals with autism or  asperger syndrome. Autism, 4, 63-83.

Howlin, P. (2004). Autism and Asperger syndrome: Preparing for adulthood  (2nd ed.). Oxford, UK: Routledge Taylor & Francis Group.

Marquette, J. (2002). Independence Bound: A mother and her autistic son’s journey to adulthood. Prospect, KY: Harmony House Publishers.

Marquette,J., & Miller, S. (November/December 2004). Remarkably Able: Transition to Independent Assisted Living. Autism Asperger’s Digest.

Osborn, K., & Wilcox, B. (1992). School to community transition: A planning and procedures handbook for parents and teachers in LaPorte County. Bloomington, IN: Indiana University, Institute for the Study of Developmental Disabilities.

Stuart-Hamilton, I. (2005) An Asperger dictionary of everyday expressions.  London: Jessica Kingsley Publishers.

Wehmeyer, N. (Winter 1993/94). Self-determination as an educational outcome.  IMPACT, 6(4), 6-7.

Zaks, Z. (2006). Life and Love: Positive strategies for autistic adults. Shawnee Mission, KS: Autism Asperger Publishing Company.

Autism Society of America: The Voice of Autism. 7910 Woodmont Avenue, Suite 300 Bethesda, Maryland 20814-3067 Phone: 301.657.0881 or 1.800.3AUTISM Fax: 301.657.0869 Web: www.autism-society.org

This material was reproduced with support and permission from the Indiana Resource Center for Autism (IRCA). Visit www.iidc.indiana.edu/irca.