Life with Autism: From Childhood to Beyond

At first glance, Alex Brenner looks like any other college student, sharing a crowded apartment with a roommate and using a smartphone to stay organized as he juggles homework, exercise and socializing. Alex isn’t a typical student, though. Diagnosed with Asperger’s syndrome as a young teen, he finished high school with severe academic deficits and an uncertain future.

Alex is now on track to graduate in 2015 with a bachelor’s degree in geography, but it hasn’t been an easy road. He’s part of an unprecedented boom of teens and young adults with autism spectrum disorders (ASDs) navigating, or preparing to navigate, the world beyond high school.

Rising Tide

According to a 2014 Centers for Disease Control and Prevention report, between 1993 and 2003, the number of new autism diagnoses ballooned 500 percent. That means the kids diagnosed in the wave of the ‘90s are now washing up on the shore of young adulthood, or, like Alex, are already there.

The world is scrambling to keep up with the needs of this swelling population, but it may not be changing fast enough, says Benjamin Wahl, MSW, program director for Ryther’s Aspiring Youth Program, offering social skills and leadership development for spectrum youths ages 8–18. “Half of spectrum individuals have zero structured activities in the two years post high school. There’s a steep decline in support,” Wahl says.

Case in point: Many people don’t realize that most students’ IEPs (individualized education program) end when high school does. An IEP pulls together an array of specialized services, from speech therapy to occupational therapy to support for regular classwork.

The IEP exists to ensure adequate assistance through high school, says Julie Jine, educational services coordinator for Highline Community College’s Achieve program. But once students have that hard-won diploma in hand, they’re on their own.

Legislators see the need for more support. To address these issues, a statewide Disability Task Force in Washington was created by Senate Bill 5180 in 2013. And while the state does provide a plan for transition, because the K–12 and higher-ed systems are largely independent, parents have to engineer and direct the process independently.

The Achieve program coordinates resources and transition planning on a local level for students, Jine says. “Too many students are falling through the cracks.”

College Core

Academically speaking, a college education is a realistic goal for many students with ASDs; many can intellectually handle the material just fine, Wahl says. But students with ASDs who thrive on predictability and routine can struggle with the ever-changing slate of professors, shifting class formats and discussion-based classes.

All college campuses have a disability resource center and allow accommodations for students with learning disabilities, but colleges are just beginning to grapple with the needs of a growing ASD student population, says Sara Gardner, program manager for Bellevue College’s 4-year-old Autism Spectrum Navigators program.

“We saw that students with spectrum disorders had this roller coaster experience in college,” she says. “They would enroll, maybe do well for a while, then fail and withdraw. We wanted to see if providing some extra support could smooth out that roller coaster.”

It did. During the program’s pilot year, students in the test group completed 85 percent of classes they attempted with an overall GPA of 3.04, compared to a 67 percent completion rate and GPA of 2.35 for ASD students who received no support.

Work Woes

For most, a good job is the endgame for college, and employment is a precursor to any type of independence. Youths and young adults with ASD can thrive in the working world, but often struggle to first get a foot in the door, says Seattle-based Patty Pacelli, author of “Six-Word Lessons for Autism Friendly Workplaces” and mom to a grown autistic son.

One of the biggest challenges is interviewing, she says. “Most individuals on the spectrum simply don’t interview well, because they find it more difficult to quickly form responses to verbal questions and thus don’t communicate very well about their skills and suitability for the job.”

On the job, young adults with ASD may struggle to understand “work culture” and fit in, Pacelli says. Under the ADA, individuals with ASDs have a right to certain accommodations, even having a job coach at work. A growing number of companies are seeking candidates with autism. That’s because individuals with autism bring unique, often desirable traits to the workplace, including passion, integrity and intense focus.

Less is More

As soon as many parents get a diagnosis for their young child, they want as much support as they can get — a dedicated aide at school, accommodations for tests and assignments, etc. But some experts propose the opposite. Instead, use the least amount of support possible. Providing students with the support they need to succeed, and no more, builds skills they’ll desperately need later on.

Valerie Brenner, mom to Alex, agrees. By the time a student with ASD reaches high school, it’s time to start “weaning off” some of those strong supports in place, including full-time behavioral aides, she says. Students should start learning to self-manage school deadlines.

Valerie carried this concept through to Alex’s home life, too. As a way to prepare him for college living, she turned his home bedroom into an apartment of sorts, complete with a “mailbox” outside the door, a fridge and a personal calendar. After high school, she had Alex start handling his own mail, laundry, meal planning and schedule.

This approach forced Alex to learn skills he still uses: To this day, he keeps track of his daily schedule and assignments on a large white-board calendar in his apartment.

For young adults on the spectrum, it’s about interdependence, not complete independence, Gardner says. “We want parents to understand that their young adult may always depend on them for certain things, but that everyone has strengths they can bring to work and life. We help students learn to build on those strengths.”

Malia Jacobson is an award-winning health and parenting journalist and mom of three. Her sister was diagnosed with autism at age 2.

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