Helping Your Child to
Help Him/Her Self:
by Stephen Shore
Originally appeared in the Advocates
for Individuals with High Functioning Autism Asperger's Syndrome
and other Pervasive Developmental Disorders newsletter.
Self-advocacy is realizing what one needs in order to maximize
functioning in life and knowing how to arrange the environment or
obtain accommodations to do so. Or put another way, it is being
literate about ones own needs.
The road to self-advocacy includes discussions of disclosure, special
interests, learning styles, learning accommodations, and even relationships.
One place to teach these skills is through involving students in
the development of their own Individualized Education Plan (IEP)
the moment it is known that a person is on the autism spectrum.
Advocacy in Education as Training for Advocacy in Life
Given that the public schools are charged with enabling the nations
youth to lead fulfilling and productive lives, it only makes sense
to include self-advocacy as part of that education for all students
with disabilities. Including the student in the development of the
IEP is a great way to accomplish this goal.
As much as possible, students should be involved in developing
and leading their own IEP process as soon as possible. As mentioned
in Student-Led IEPs (McGahee, Mason, Wallace, & Jones,
2001), given the great variance of student ability, there is a wide
range of options. Some students may just be able to state or read
part of their plan for the future to the IEP team, others may go
on to explain their disability, describe the need for accommodations,
share their strengths and challenges (present levels of performance),
and talks about plans for the future.
The eventual goal is a student-led IEP meeting (under the watchful
eyes of the IEP team). Dealing with the paradigm shift from being
advocated for through the IEP to having to advocate for oneself
after high school requires much long-term work. Starting the process
of teaching self-advocacy ideally could begin before age 14 when
transition planning for life after high school is mandated into
the Individual Education Plan (IEP).
Providing students with a well-developed sense of self-advocacy
through the process should be an integral part of education. Doing
so is vital for gaining a greater understanding of how to obtain
the required accommodations upon entering the community, in higher
education, employment, and relationships during the late adolescence
and adulthood years.
Ramifications of not Learning Self-Advocacy Skills
The ramifications from failing to acquire sufficient self-advocacy
skills can be very debilitating. For example, at the higher education
level, young adults in this unfortunate position may feel that special
education is "all done" and want to "be just like
everyone else". They enter college unaware of their needs and/or
refuse to meet with the student support office. However, since variances
in learning styles remain with the person, soon difficulties in
coursework mount, and then the student may be at a loss on how to
obtain the needed assistance. After high school, the onus of obtaining
needed accommodations lies with the person themselves. For example,
in higher education the student must initiate the process of acquiring
accommodations by finding the appropriate office, making the disclosure,
preparing the documentation, working with instructors, etc.
Many young adults on the spectrum are forced to learn the realities
of self-advocacy after high schools and entering the community,
workforce, or higher education. Proper preparation through the use
of active involvement in the IEP process can help smooth the way
for those on the autism spectrum to lead fulfilling and productive
lives to greater potential.