Vassar junior Zoe Gross knows her strengths and weaknesses all too well. So while she gets good grades, the 21-year-old is aware that she does things more slowly than most people, including getting dressed in the morning, transitioning between activities, and writing papers. It makes college an even greater challenge. “When you take into account that when I’m living on my own it is difficult for me just to keep myself washed, fed and in clean clothes,” she says, “it means that I can’t do the schoolwork as fast as the professors can assign it.”
Gross is on the autism spectrum, and her struggles with life skills and executive function—the mental processes that involve things like planning, time management and multitasking—leave her feeling depressed and anxious. “I get sick a lot because my immune system is shot,” she says. “I got strep and mono in one semester.” Of course, this adds to her anxiety and trouble getting things done. “Every semester I am absolutely miserable by finals.” After finally hitting a serious “rocky patch,” as she puts it, Gross decided to take a break this semester.
Gross represents a wave of young people on the less affected end of the autism spectrum who head off to college after high school. Because these bright if socially awkward children have been doing well academically, it’s a natural assumption they will do fine in college and beyond. Many parents do not anticipate the struggles their kids, without the family structure and the supports they were provided in school, will face.
Conventional wisdom holds that the biggest problems for those on the less severe end of the spectrum are social and communication issues. They might miss social cues and misunderstand what’s expected of them. But disrupted executive function, usually associated with ADHD, is also common in people on the spectrum, says Dr. Ron J. Steingard, senior pediatric psychopharmacologist at the Child Mind Institute. “I think the burden is increased in autism,” he says.
Which makes college, often the first foray into independent living, especially challenging. While Gross sees many students reveling in their freedom, she says the responsibility of staying organized and on track that goes with freedom is her most formidable obstacle. “I’ve talked to people who want to frame the issues I have as social because they see autism only as a social disability,” she says. “But any social issues I might have at college pale in comparison.”
Gross’s difficulties are all too common, says Stephen Shore, a prominent advocate who is an assistant professor of special education at Adelphi University and author of several books on autism. “Managing the independent aspects of life as a college student such as living in a dorm or apartment, combined with scheduling homework, maintaining proper nutrition, etc., may overwhelm the individual’s executive functioning capabilities,” he says.
The challenges of independence
Asperger’s does not mean “no challenges,” confirms Lynne Soraya, who writes the “Asperger’s Diary” for Psychology Today. “I was hit by a car—for the second time—when I was in college, at age 19. Life skills like learning how to effectively manage sensory inputs so that you can safely cross a street are still applicable for those of us deemed ‘high functioning.'”
The day of the accident, Soraya says, she had gotten in an argument and was so overwhelmed by her emotions, along with the noise and crowds, that she experienced tunnel vision and didn’t see the car coming until it was too late.
Add to the challenges of independence the withdrawal of the educational supports and services some of these kids have been receiving since they were as young as 2 years old; those supports vanish when they age out of children’s services. They do not grow out of their autism, and they may very likely have other, accompanying problems, including anxiety and ADHD, that may make things that much harder.
Over the next five years, an estimated 200,000 teenagers diagnosed with autism spectrum disorder will be aging out of the services provided under the federal Individuals With Disabilities Act (IDEA). Of those, a significant number will be invisibly disabled teens and young adults like Gross. They may have attended mainstream schools, thanks to services and accommodations such as social skills groups, occupational therapy and additional time during test taking.
When these teens and young adults do age out, they will enter a world much harsher than the one they leave behind. “For those who have a disorder that’s principally diagnosed in childhood and persists into adulthood, the adult universe is unprepared for them,” says Dr. Steingard, noting that multiple agencies offering educational, social, medical and mental health services simply drop out when children move to the adult system. He notes another critical issue: the difficulty in finding clinicians who are comfortable treating adults with “childhood” disorders such as autism and ADHD.
While IDEA allows students to remain under the children’s services umbrella until they’re 21 or 22, depending on the state, many teens with less severe ASD will want to leave high school earlier, along with their typical classmates, despite the fact that they may lack the independent living and social/emotional skills that early adult life, including college, require. Besides, “public school tends to be difficult place for people on the autism spectrum,” Shore says. “There are many situations where it’s better that they enter adult school, where the bullies are gone and the classes are more interesting.”
The aging-out process begins officially with transition planning, which takes place during the annual meeting for the child’s federally mandated individual education program (IEP), starting as early as 14 and no later than 16, depending on the state. At that point, the focus shifts to any kind of post-high school education, training or experience, “from hygiene to banking to job training, driver’s education, sex education, college admissions and more,” writes Lisa Jo Rudy at Autism After 16, an excellent resource about transitioning, along with Autism Speaks’ Transition Tool Kit. But Shore believes this planning should begin earlier—much earlier.
“Transition starts as soon as you know someone has autism, even at two and a half,” he says. “It doesn’t mean you’re determining your child’s entire adult life, but you are trying to figure out his strengths so that they can be molded to lead to a fulfilling and productive life.”
Shore realizes this is a tough concept for parents to get their arms around. “It can be overwhelming to find the time or energy to want to see that far into a future, especially when you’re in the thick of things. Some will assume their kids will get into college and do fine, but the evidence shows that the hand is stacked against them and they need to prepare for it, the earlier the better.” He suggests that parents find support groups to help them deal with all the issues their children’s autism presents, both now and in the future.
Practice in self-advocacy
Traditionally, students start attending their IEP meetings when transition planning kicks in, but they may do so earlier. By the time they’re teenagers, Shore says, students need to learn about negotiating for reasonable accommodations that will help them succeed.”For instance,” he says, “a child might share that the scratching of pencils during tests is distracting and they can’t work,” leading to a request for a separate space for testing.
“Some do research for their own accommodations,” he adds. “They’ll say, ‘I don’t need extra time, I need help in organizing time. This provides them with practice in self-advocacy, which is critical in college and everywhere else in adult life,” when IEPs and parental advocacy end.
Rudy writes that transition plans must take into account whether the teen or young adult is really ready to leave home. While kids who are minimally affected don’t necessarily need a group home, they lag in areas like social and executive functioning needed for self-sufficiency in the future. There are specialized summer programs cropping up aimed at easing the transition, but they can be expensive.
Those interested in pursuing college will find a great resource in Navigating College: A Handbook on Self Advocacy Written for Autistic Adults from Autistic Adults, compiled by The Autism Self Advocacy Network (ASAN). Written by autistic adults, the handbook offers practical advice on everything from self-advocacy to sensory issues. (Tip: Find a quiet dorm.) Shore advises students to make an appointment with the disabilities office and disclose that they’re on the spectrum. While colleges don’t require seeing an IEP, he suggests that students offer their paperwork so the school has a better idea of their needs. Meanwhile, GRASP, the Global and Regional Asperger Syndrome Partnership, offers a video that provides a good overview of issues and considerations for autistic students.
Tools for staying organized
Zoe Gross had some sessions with an educational therapist/planning specialist before college but they didn’t really help, she says, because “I was reluctant to participate due to anxiety around planning.” Once at Vassar, she did her best to compensate for her challenges, which she outlines in her chapter for the ASAN college handbook, titled “Better Living Through Prosthetic Brain Parts.” She writes that her parents always helped her stay organized, right down to reminding her to eat dinner. But in college, “if I forget about an appointment, no one will remember it for me.”
So Gross devised some practical tools to help her stay on track, including visual timers, planners and multiple alarm clocks. Because “there are so many small steps between waking up and walking out the door (getting up, showering, dressing, packing…),” she drew a flow chart that’s included in the book titled “How to Leave the Room.” It starts with the question: “Do you need a shower?”
“Those tricks only go so far,” she says now.
“Autistic students need a way to spend more time in school without it being prohibitively expensive to our families, as college already is for so many,” she says. “We need a way to work at a different pace and have that be all right. Ideally, many of us would benefit from having personal care aides at college, as a quadriplegic student might have. However, it’s going to be hard to get supports like these put into place because they cost institutions money.”
Special-education advocate Carol Greenburg, who is also an editor at Thinking Person’s Guide to Autism and East Coast regional director of the Autism Women’s Network, knows firsthand what Gross is experiencing, though Greenburg’s struggles in college were mainly due to her social and emotional delays. “Kids who are very verbal and whose autism is not obvious—like I was and am—are in danger of falling into a trap of taking on a little more than they can handle, and even a little bit can lead to real problems,” she says. “We’re dysregulated more easily than people with a non-autistic brain.”
Autistic students becoming overwhelmed is “a huge problem,” Greenburg says. “Either they do very well academically but are miserable because of deficits in the emotional area, or they crash and burn because the demands are so high, living away from home in a competitive college environment, where a lot is expected.
The problem for parents is that when your kids reach college age they don’t want to hear from you and they don’t realize how dysregulated they’re becoming. They end up back home, having dropped out of college.”
Keeping things manageable
Back home in Oakland, California, Gross is earning some credits at community college, which will allow her to take fewer courses when she heads back to Vassar without jeopardizing her financial aid. She feels this is the only way she can keep things manageable. She says because community college is more flexible, it might be a good starting point for autistic students and is also a good Plan B.
Greenburg agrees: “It’s a great way to try out the academics of college while being home-based. I might have been better off in a setting that was a little closer to home and didn’t take on quite as much beyond academics. Then I could have gradually moved to a setting where I’d have to live independently.”
Does Gross have any advice for autistic students headed for college campuses? “College is designed for the use of neurotypical people,” she says, “not for you. The guilt you feel when you have to ask for extensions or accommodations, when you turn in papers late, or when you have to take time off can be overwhelming. Try to remember that this isn’t happening because you’re a bad person—it’s happening because colleges are not accessible enough for students like us. Hopefully one day we can change that, but for now, hang on, do your best and try to keep loving yourself, no matter what happens.”
This is the second in a series on young adults with autism growing up and aging out. Part I discussed finding (and sometimes inventing) good supported living options. Part III explores working while on the spectrum.