Empowering my son to negotiate the ‘autism cliff,’ enter adult life

ISLAMABAD: Like many parents with young autistic children, my focus suddenly changed when my son received the diagnosis of autism spectrum disorder (ASD). After a long and arduous diagnostic process, I shifted from wondering if he had autism to searching for the services he needed to learn, grow, and manage autism-related challenges. This included in-home therapy, school-based services, and nutritional therapies.

Because of the time invested in researching and implementing various treatments, and the effort invested in advocating for my son, I didn’t have the mental bandwidth to think too far into the future.
But as he grew, I realized that even though he had experienced incredible progress throughout his journey, the challenges associated with autism would likely not end when he became a legal adult. This realization made planning for his future a new and urgent priority.

Autism advocates, including the Autistic Self Advocacy Network (ASAN), have called for a change from “Autism Awareness Month” to “Autism Acceptance Month” to encourage inclusion and increase support and opportunities for autistic individuals.IEP, transitions, and approaching the ‘autism cliff’
Like many autistic students in the United States, my son’s educational journey from pre-school to high school graduation was mapped out with an Individualized Educational Program (IEP). An IEP is a legally binding document developed and instituted when a child meets the public school’s criteria for specialized education.

This document outlines the child’s needs and designs an educational program to meet those needs best, whether through speech and language therapy, occupational therapy, or the addition of support people like paraprofessionals to assist the child throughout the day.With an IEP in place, a child’s educational journey does not have to end at 18. Instead, the young person and their parents can decide to continue attending school up to age 21.This 18–21 period is considered one of “transitions”— and is designed to shift the young person from educational-centered to adult-oriented learning. Much of this includes teaching independent living and job skills.

In the United States, statistics suggest that 500,000 young adults with autism will transition into adulthood over the next 5 years.Unfortunately, many schools don’t have the resources to develop transitions programs that fully address the needs of autistic students entering the adult world.
A Centers for Disease Control and Prevention (CDC) surveyTrusted Source using parent-reported data from the National Survey of Children’s Health found that autistic students were less likely to receive transition planning than children with other emotional or behavioral conditions.Furthermore, even if a transitions program exists, it may not cover all the gaps in services that suddenly occur when the child reaches 18 years old. Parents often refer to this sudden loss of services as the autism cliff.

Building a bridge over the ‘autism cliff’
When faced with a sudden reduction or loss of services, parents of autistic children must build a bridge over that gap. And they may not always have the information and resources needed to construct it, which leaves them unsure about what to do next.Fortunately, my son’s experience has been different due to the charter school for autism he attends. His school, Lakeland STAR School/Academy, was created in 2018 by a group of dedicated parents, educational professionals, and community members and supported by generous donors. STAR serves diverse learners in grades 7–12 and has a transitions-focused curriculum.However, because autism ratesTrusted Source continue to rise, the school has seen tremendous growth. As space to enroll new students became limited, a need for a separate transitions program emerged.

To address this need, Lakeland STAR is now developing a transitions center with the help of community-based organizations, including Aspirus Health, Lakeland Union High School (LUHS), the Howard Young Foundation (HYF), and the HYF Women’s Legacy Council.Scheduled to open in the fall of 2022, the center will offer transitions-based education, including independent living skills, job skills training, and related services. The new center will help my son and other autistic young adults bridge the gap over the autism cliff and into the adult world.

Still, through my experiences, I’ve learned that transitioning is more than just transition programs. It also includes critical legal aspects of becoming an adult regarding healthcare and finances.
Depending on the level of support the young person needs, these legal aspects may include deciding whether to pursue legal guardianship, financial power of attorney (POA), or power of health (POH). In the U.S., a parent must complete these documents before the young adult’s 18th birthday.