Rebecca SperberA recent NBC Dateline episode, “On The Brink” aired on April 12, 2015, and highlighted a dire situation facing many autistic young adults and their families. It stated that within the next two years approximately 500,000 autistic teenagers will become ineligible for free public education because they will have reached the age of 22, The official term for this process is “aging out” of the school system. An influx of adults with significant functional difficulties will flood into the mainstream of society, with few appropriate educational, vocational, and social programs available to them. In addition to the financial stress that will be put on state and federal social services, the expense to individual families responsible for the care and well being of these young adults will be overwhelming, and in some cases impossible to manage. The concern is clear: the unwarranted neglect of the educational and vocational potential of these young people, who by age 22 are not ready to have their academic education terminated, replaced only with vocational tasks which they may not enjoy, feel proud of, or challenged by.
Federal law states by the age of 16, students with developmental disabilities are supposed to have Individualized Transition Plans (ITP) in place as part of their Individualized Educational Plan (IEP). The ITP is supposed to serve as a template for the formation of a plan to identify skills and capacities to be developed to prepare young adults with disabilities to leave high school and be successful in an environment outside of the educational system. These settings would include vocational training programs, social settings, and employment settings. This plan, in theory, seems to be a good one: start 5 years before formal state education is terminated and prepare the student (to whatever degree possible, given the particulars of their functional capacities) to enter a setting in their community where they can develop skills that will aid in building a purposeful, authentic self.
FLAW #1: THE ITP ITSELF
The ITP is supposed to be specific in identifying and highlighting job-related skills that need to be worked on. It is supposed to have measurable goals, with time frames for those goals to be achieved. However, it should but does not stipulate goals regarding functional academics related vocational tasks which would give more meaning to and promote more engagement in skills in vocational settings. Strategies for success aimed at creating growth and change in the cognitive function of the student should be part of the plan. If the ITP is to be useful, it cannot rely on boilerplate phrases that allow for boxes to be checked off but lack a plan with therapeutic measures in place. These academic components are essential in making sure precious time is used to help these students attain some level of mastery of the application of functional academics in post-secondary settings, and develop skills and interests which will lead to success and self-fulfillment in whatever goals they pursue.
The current form of the commonly used ITP ignores the cognitive and educational skills of the student, almost as if the student has been written off by age 21-22 as not needing to add to their academic base of knowledge. This mindset relegates these young adults to “doing” tasks, usually at lower-level jobs. There is nothing wrong with those jobs, and nothing wrong with some students being placed in those jobs. However, is it fair to decide at a certain age that the more significantly affected individuals have reached their academic potential and that we, not they, will define how they will spend their time and what kind of future they may want to pursue?
With the passing of Self Determination Legislation, there is a new and much-needed respectful mindset toward the issues facing people with autism and their families. However, it is not directly useful to those who have limited speech, cognitive impairment, and sensory-motor issues to be enrolled in programs that ignore their ability to learn functional academics. Many autistic individuals cannot advocate for themselves, and even with strong parental advocacy, commitment to teaching functional academics by secondary educational institutions, adult day settings, or vocational settings is critical. For example, it is disrespectful to just hand a person cans to place on a shelf without supporting the ability to count the items, read the labels, identify the use of the product, and understand the importance of the task they are performing. For those aging-out students who have not discovered a specific skill or talent, teaching functional academics at the very least adds some meaning and utility to tasks they will perform at these vocational settings.
FLAW #2: SECONDARY EDUCATIONAL MINDSETS, ATTITUDES, AND CURRICULUM CONTENT
As a parent of a twenty-year-old son with severe autism, and as a professional in the field, it has been painful and frustrating to navigate the rigid mindsets and politics of a large school system. Once I made sure that I became educated and accomplished on the subject of autism as a writer, lecturer, and practitioner, I became a strong advocate for my son. At times my advocacy caused resistance and insecurities from school personnel, administrations, and teachers. Out of fear and concern for my son Benny, I studied and became an expert on his form of autism which included impairment in speech, cognitive functioning, sensory processing, and social functioning.
At regular intervals, I provided school personnel with high-level information, resources, and personal time to assist in creating a curriculum that reflected who my son was and what he needed to achieve the next level of whatever functional capacities were possible for him. I thought my support would be of help and welcomed by those assigned to aiding my son’s educational and social experience. However, I was often met with resistance due to professional insecurities, laziness, and the devaluation of parental knowledge and expectations. My main goal had been to ensure that my son’s abilities were maximized and that his functioning differences were well understood. I always tried to promote open-mindedness and creativity in his program.
Suggestions, observations, and questions were often met with resistance and negative personalizations by staff and administrations. Most parents want the collaborative model to go beyond merely meeting as a team, and being lectured about what their child’s program should include. Input from parents about how their kids function at home, what triggers their positive and negative emotions, and identifying their interests is vital information in the development of an individualized program that awakens brain function and emotional engagement as well as shows respect for the kid.
The curriculum issue of most concern is the practice of teaching children with moderate to severe cognitive disabilities information that is not understandable, meaningful, or useful to them. It is fine to share general information about history, literature, or science for kids who might be interested. However, for the student with significant intellectual disabilities, traditional academics will not further functionality or create a positive experience for them. The ability to spell, read, and practice simple math could improve their communication skills, self-esteem, and success in areas of their interests. Academic skills are a significant part of being successful in a variety of vocational and social settings outside the traditional classroom setting. To leave academics out of the ITP, and out of programs working with these individuals, is a blatant misunderstanding of the importance of cognitive development in attaining long-term goals.
The goal of supporting cognitive development should be an ongoing priority for programs working with individuals with intellectual differences and disabilities. The human brain has plasticity, and the potential for learning and advancement in all domains of functioning is possible for both neurotypical kids and those with cognitive and behavioral challenges. The brain continues to develop to its full capacity through the age of 26-28, so it is counter-indicated to terminate functional academic learning for any person, typical or non-typical before that age.
SOLUTIONS AND HOPE
Professionals working with young adults transitioning out of high school should expand the ITP format to include a section stressing the continued need for functional academics which improve job performance, skill acquisition, and appropriate social interactions in the workplace or other settings outside the home. Programs working with this post-secondary educational population need to provide some attention for the kind of reading, writing, spelling, and math that will support components of their individualized programs. Professional educators should be part of the staff so academic skill sets can be built on with certain jobs/careers or talents in mind. For the more profoundly affected individual, supports should be built into programs to help improve communication skills which will further support a sense of connection to work settings and other people.
Regional Centers also need to recognize the need for a continued academic educational component for the special needs programs they vendor. Parents need to play a consistent role in continuing the focus on functional academics in the home and the community. Parents should periodically obtain clinical and educational assessments, and provide those to their kid’s adult placement center to increase the effectiveness of those programs which in turn provide services and opportunities for their sons or daughters.
There is and continues to be power in learning, and people challenged with cognitive difficulties should be reminded that they can learn and accomplish goals that have meaning for them. No matter how limited an individual’s communication and academic skills might be, attempts should be made in school and in post-secondary vocational programs to read the verbal and nonverbal signs that young person is sending in their attempt to be heard, understood snd accepted for who they are.
Published: May 6, 2015
