After working part-time her first two years of college, Debbie D. ramped up to full time along with her coursework the last two. But this admirable juggling feat left her so frazzled she would forget to eat, brush her hair or fill up her car’s tank — “I ran out of gas on the highway more than a few times.” So she couldn’t wait to graduate in 2007, thinking that once she was able to focus on her career, life would get easier. She was wrong.
At 22, “I was in the midst of moving into my first apartment,” recalls Debbie, “learning how to pay my own bills, becoming familiar with a new routine outside of the structure of school, and learning what being a professional meant.” Her transition into adult life continued to challenge her executive function skills—things like planning, time management and multitasking. Meanwhile, her promotion to shift supervisor at the same human services company that had employed her throughout college exacerbated the social and sensory difficulties associated with her autism spectrum disorder (ASD). Four years after receiving her diploma, she says, “I’m still trying to learn the ropes.”
Despite her struggles, Debbie is beating some very dismal odds among the young ASD population on all points of the spectrum. Caregivers and self-advocates have long had grave concerns about what the future holds for the “great wave” of children and teens diagnosed with ASD, half a million and counting, who will be aging out of the educational and support system provided by the federal Individuals With Disabilities Act (IDEA) over the next decade. They and their parents face the great uncertainty of adult services, post-secondary education and employment opportunities.
Their fears have been confirmed by a study, the largest and most definitive to date, examining how autistics do after they transition out of high school. The study shows that two years after graduation, half of ASD young adults have no paid job experience, technical education or college. Nearly seven years out, the numbers improve but remain bleak, with one out of three having had no paid work or post-secondary education. That’s a higher percentage shut out of the work world than for other disabilities, including the mentally disabled, with heightened risk of poorer outcomes for those from lower-income families and those with greater functional impairment.
The study documents “what we have suspected for some time—that the young adult autism population faces significant, additional challenges to employment beyond those faced by many other disability populations,” says Dr. Scott Standifer, a clinical instructor in the Disability Policy & Studies office at the University of Missouri. While the numbers aren’t as bleak as the 80 percent unemployment rate often cited—without solid statistics to back it up—the study only represents those identified as on the spectrum in school special-education programs in 2000 and doesn’t reflect older adults who aged out before 2000. Had this group been included, the picture would certainly be bleaker.
“Previous generations of children with autism did not usually have the kind of intensive, early interventions and supports that our current generation has experienced,” Standifer says. Unless they got these types of interventions from “inspired, contrarian parents”—as was the case with autism advocate Temple Grandin—they were likely misdiagnosed and institutionalized or dismissed as odd or “crazy” and allowed to slip through the cracks.
It’s important to note that the study’s subjects span the spectrum, including those with an Asperger’s diagnosis. Just because an autistic person is highly verbal and less visibly disabled doesn’t mean he will “age out” of his impaired understanding of the unwritten rules of social engagement that allow for things like having conversations, being comfortable in a group, and reading social cues such as intonation and body language, all of which play such a large role in the work world.
Temple Grandin was so concerned about unemployment among those less affected by their autism that she compiled a collection of essays by ASD individuals succeeding in a variety of fields for her book, Different … Not Less, to inspire young people. Grandin, who has likened her social communication challenges to being an anthropologist on Mars, told Salon she was motivated to do the book after “seeing way too many people with high functioning autism and Asperger’s not getting jobs and making transitions to adult life.
“Having worked in a technical field my whole adult life,” she said, “I think, ‘Where are the Aspies?’ I think about people I went to college with, the geeky kids, different kids. One of the things hurting people with Asperger’s today is they’re not being taught social skills from old people on the spectrum who managed to be employed their whole life.”
Trouble reading between the lines
Debbie says that when she became a supervisor, her social deficits presented a huge learning curve. When you have trouble reading between the lines, she says, it’s hard to understand that “sometimes people will tell you things they don’t mean, or will leave information out that they really do need you to know, and that as the go-to person you will need to fill in the blanks.”
But the ramifications of her disability are much larger. “To lack the skills to contribute to the conversations that matter stands to negatively impact my career long-term,” Debbie says. “When you don’t ask the right questions in trainings, offer the knowledge and experience you have during meetings, or advocate your needs and concerns to those who can do something about it, your value starts to go away.”
At the same time, Debbie says her unease with casual conversation leads others to misjudge her. They may first think she’s just extremely shy, then reserved and timid, and finally “odd, eccentric, reclusive and secretive.”
“When you don’t look someone in the eye, it’s perceived as arrogance or rudeness, not as evidence of the discomfort with doing so due to disability,” adds Lynne Soraya, who writes Psychology Today‘s Asperger’s Diary when she isn’t working for a Fortune 500 company, “When you don’t read someone’s subtle body language, it’s assumed that you’re uncaring or, worse, a bully who doesn’t know when to back down.”
An ASD individual’s honesty — some might call it the lack of a filter—is perceived as hostility, leading to exclusion from important meetings and activities like lunches and after-work drinks. This is where having a more invisible disability “creates unique difficulties,” Soraya says. “When you don’t fit someone’s stereotype of what having a disability looks like, a lot of the traits of a condition like Asperger’s can be perceived as character or moral deficits — or as just not trying hard enough.”
Yet sensory issues so common among those on the spectrum may be the most profound work obstacle for some. “Working in office buildings, amid the endless rows of cubicles, fluorescent lights and commercial copy machines can be deafening,” Debbie says. “I do not simply become distracted, I live in a state of distraction. I have become good at presenting myself as an attentive and focused employee, but the reality is, all I am actually doing is concentrating very hard on sitting still in my seat.”
She adds that her sensory issues can so overwhelm her, her executive function “goes out the window.” On the days when her focus is only on certain sensory input, she tries to break her day down in to smaller, more manageable segments. For instance, she may allot 30 minutes to read her emails, then an hour to attend a staff meeting. “But when I am focused on the flickering light on the other side of the floor,” she says, “I try to eliminate activities that I know can wait.”
The rub: Debbie has come to realize that what she does when she is focusing — running her fingers along her files, perching on the edge of her seat, twirling her hair, standing up and sitting back down repeatedly — looks like inattention or distractibility to coworkers and supervisors. So on her busiest days, she tries to come in early or stay late “so no one can see me.”
Soraya recalls one time when she was anxiously snapping her fingers, a coworker castigated her for being impatient when, in fact, it was a self-soothing “stim,” or stimulation, most often associated with things like rocking among less verbal autistics but seen in different forms on all points of the spectrum.
Unpredictability creates stress
Even when someone like Debbie is able to take some control over her environment, there’s often a lot of unpredictability in the workplace that can put a great amount of stress on executive function, notes Dr. Ron J. Steingard, senior pediatric psychopharmacologist at the Child Mind Institute. “Someone with Asperger’s or autism may function very well when they develop a routine at work,” he says. “When something happens that wasn’t supposed to happen and the routine is changed or disrupted, they may have more limited ability to ‘flex’ with changing demands than others. This could lead to more frustration, withdrawal, and perhaps result in poorer performance on those occasions.”
For Debbie, there is a sense that she’s chronically behind the curve.
“I definitely lag behind my peers in terms of being independent and being a young professional,” she says. “I am not friends with anyone on the spectrum, and the friends I do have are growing up quicker than me. Most have gone on to very successful careers, have gotten married and are starting families. I’m still working on living on my own (paying bills, going grocery shopping and having a car). I live a few hours away from my parents, and they will be moving several more hours away next year. I try to rely on them as little as possible, knowing that next year that support system will be gone.”
This is the third 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 II explores going to college with autism.