Ever since kindergarten, my son, Archer, has been "in the system." Before he started school, my wife and I notified the district that he'd been diagnosed with autism. Each year since then — Archer is wrapping up eighth grade — we've met with his teachers and school administrators to work out an Individualized Education Program, determining how many hours a week he'd be pulled out of class for one-on-one therapies and how much leeway his teachers should allow him to fidget, pace, or calm himself by humming softly.
Like most other parents of kids with autism spectrum disorders, my wife and I can expect to continue having these meetings until Archer graduates from high school. The Individualized Education Program has changed as he's matured and his social skills have improved, but until Archer turns 18, his teachers will know about his disorder, and we'll have the right to call meetings and make special requests on his behalf. That's the way the system works, and it's been working very well for autism spectrum kids across the country for years now.
"We make the assumption that high schools are getting students ready for college, and they're not"
The bad news is that the familiar patterns of care that have proved so effective at moving autistic students through their primary and secondary education may actually end up hindering them if they choose to go to college — or even into the workforce.
"We make the erroneous assumption that high schools are getting students ready for college, and they're not really," said Dr. Gerard Hoefling, who works with the Autism Support Program at Drexel University. "That's not their primary task. High schools do a wonderful job of getting students ready to graduate from high school."
Fortunately, there are steps that parents, colleges, and autism spectrum students themselves can take to ease the transition from high school to college. Nearly all of them focus on helping students like Archer to become independent self-advocates — the same goal most parents have for their neurotypical kids, too.
The problem with high school
The exact number of men and women on the spectrum attending college today is hard to pin down, because there are few incentives at the moment for those students to register with disability services. Circa 2008, autism researchers estimated that anywhere from 1 to 2 percent of the university population had autism, Asperger's, or some pervasive developmental disorder. Autism spectrum diagnoses have only risen since then.
Jane Brown, co-director of the organization College Autism Spectrum, described the big problem with how students on the autism spectrum transition from high school to college: "Up through high school, parents are advocates and CEO of their child's education."
But not only are universities not inclined to allow parents to stay in that driver's seat, they're legally bound in some cases to shut parents out. Under the Family Educational Rights and Privacy Act, once students turn 18, they become the stewards of their own records, from grades to whatever special learning tools and accommodations they might request.
In high school, the laws are geared toward making sure that all children, regardless of any disability, have a right to "a free and appropriate education in the least restrictive environment." Colleges are under no such obligation to make sure students learn and thrive. They have to provide certain resources for people on the autistic spectrum, but it's not their responsibility to make sure those resources get used.
How to bridge this disconnect between the structure of high school and the expectations of college? Dr. Susan White, co-director of Virginia Tech's Autism Clinic, suggested that while parents of neurotypical kids usually start thinking seriously about college when their children enter their junior year of high school, it would help if parents of children on the spectrum started much sooner, asking the questions, "What are the life skills they're going to need, and how can they start developing more independence?"
Over and over, the people I talked to about the challenges facing autistic and Asperger's students in college said that "self-advocacy" was the biggest issue. Many of these teens have never known what was being requested on their behalf when they were in high school, and so don't know what to ask for in college. Worse, due to the nature of the disorder, they lack the social skills to talk to peers or adapt to their situation.
"Students on the spectrum don't pick things up just from watching," Brown said. "That nonverbal social learning often is not a strength."
There are some scattered materials online about how kids on the spectrum get ready for adulthood. Lisa Goring, the executive vice president of programs and services at Autism Speaks, recommends her organization's online guides to transitioning from adolescence, postsecondary education, and joining the workforce. In an earlier Vox article, I wrote about the 10 things I'm trying to teach my 13-year-old autist: I mainly want him to be able to stay fed, get where he needs to be, and exhibit enough self-awareness about his quirks so he doesn't unnerve the neurotypical.
But according to nearly everyone I spoke to about this topic, the number-one thing I should be doing for Archer is something I hadn't even considered: making sure he's in the room when my wife and I have our annual meetings with his school.
If more kids on the spectrum were aware of how much special leeway they were being given in elementary and secondary school, they'd know themselves what they need to work on. It's hard to have a serious, potentially embarrassing personal conversation with any adolescent, but it's especially important that parents talk with their autism spectrum children about the nature of their disorder and how they can manage it.
How to improve the transition: start preparing early
When I mention Archer to Brown, she good-naturedly nags, "You're starting to get him ready for college now, right?"
Brown has a 23-year-old on the spectrum, and understands the confusion and frustration parents face when they're handing college freshmen over to institutions that may see them as just another face in the crowd. She estimates that the average university disability services administrator has a caseload of between 150 and 600 students, and can't hover over these kids' shoulders in the way parents were used to in elementary and high school.
That said, she does believe colleges are doing a good job of adjusting to the needs of autistic students. They can't substantially alter the requirements of a class that autists and the neurotypical alike are taking, but she thinks they do their best to "level the playing field."
The average disability services administrator has a caseload of between 150 and 600 students
"You maybe give them extended time on an exam," she says, "Or put them in a reduced-distraction environment. You might give them a note-taker. They have access to tutors and writing centers. And some colleges have specific programs for ASD students."
As a counterpoint, though, Brown adds, "I don't think there's enough work being done on transition."
Hoefling and his Drexel Autism Support Program colleague David Hallowell agree with that, and have been actively working to bridge that gap by talking to students at local secondary schools and making sure the program is aware of potential candidates when they apply.
Hoefling says, "There's clearly a market and a need. And I think that speaks to the fact that a lot of that information's not out there."
"If you need a program, go to a place with a program"
Brown says it's only natural for unusually bright autistic or Asperger's kids to want to go to one of the most academically challenging schools in the country. But once they arrive, they often find that their intelligence alone doesn't set them apart, and that even their quirks are harder to discern — which has the cumulative effect of making them dangerously invisible.
She recommends that parents take a closer look at places like the Rochester Institute of Technology, which tries not just to meet the requirements of the Americans with Disabilities Act but to exceed them, by fostering a real community among students on the spectrum. RIT has peer coaching and special small-group seminars focused on the challenges of living independently. As a result, according to Brown, the university has 100 students enrolled in its Spectrum Support Program, and nearly 100 more self-identified ASD students on campus who aren't in the program.
It's very simple, Brown says: "If you need a program, go to a place with a program."
At Drexel, Hallowell and Hoefling are overseeing one of the more successful programs, the largest component of which is a one-to-one mentorship, with neurotypical students helping students on the spectrum determine and articulate their own needs.
Hallowell explains, "These students know what their fears are. They know what their challenges are going to be. It's important to treat them as autonomous learners. These are not individuals that need to be 'saved.' These are not individuals who are sick or broken and in need of being 'fixed.' These are fully functional, capable, healthy individuals who need some support in navigating what is a very complex social system. Our goal here is not to continue to infantilize them. Our goal is to help support them in reaching whatever goal it is they'd like to set for themselves."
In high school, therapists work with spectrum students to meet generalized, quantified objectives like "recognizes facial expressions" and "gives appropriate response when asked a direct question." Those same therapists meet regularly with teachers, and can intercede if the child has an outburst in class.
Programs like Drexel's, on the other hand, make it clear from the outset that they won't be mediating between the students and the faculty or administration. Instead, they offer informal social gatherings and client-driven counseling in which the students often come up with the areas where they want to improve, whether it's something as simple as time management or something as complex as making friends.
Why colleges should recruit students on the spectrum
Hallowell and Hoefling say Drexel's Autism Support Program serves students from across the different academic disciplines, but given my own son's facility with math and computer programming — fairly common gifts for autists and Aspies — I wondered whether any of the top schools for science, technology, engineering, and mathematics (a.k.a. STEM) were actively recruiting within the ASD ranks.
It's one thing to offer to provide an exceptional level of accommodation, like RIT; it's something else entirely to see students on the spectrum as an asset to an institution, with unique gifts that may not register in test scores or interviews. If a Stanford or an MIT wants only the best of the best in the STEM fields, are they calling around to high schools looking for kids who may have trouble holding eye contact but can solve complicated equations in their heads?
When I reached out to the media relations departments of some of those universities, the most common response I received was along the lines of, "We've never thought about that."
"We should be trying not only to accommodate but to recruit and entice these very gifted students"
Brown at College Autism Spectrum answers, "I don't know that any schools are looking expressly at the autism population and saying, ‘Gee, these people are better at this.'" She does note that some tech firms have been thinking along those lines. (STEM Force Technology and Denmark's Specialisterne, to name two.)
On the flip side, Dr. Susan White, co-director of Virginia Tech's Autism Clinic, said she's been trying to encourage colleges to think of programs for students on the spectrum as recruiting tools. "I don't think most facilities have the manpower, or perhaps the forethought, to do that kind of thing," she said. "But yes, we could and should be trying not only to accommodate but to recruit and entice these very gifted students."
White added that one reason to create an inclusive, nurturing environment for people with ASD is that it's part of the university's mission to foster diversity — including "neurodiversity." Hallowell and Hoefling are on board with that idea.
Hallowell said, "It's kind of like tech firms that don't offer domestic partnership benefits. You're not going to have any employees. These kinds of support programs can be a competitive differentiator."
All parents want the same thing for their kids: independence
In my essay about what I want my son to learn before college, I wrote that ultimately my anxieties are right in line with those of any parent. The same is true when it comes to the way parents, students, and universities interact. Brown notes that even neurotypical students need help with self-advocacy — knowing when it's appropriate to ask for extra help with a class or an assignment — and Goring says she learned a lot about detaching when her neurotypical child left for college.
Goring said, "We can't see the grades if they don't want us to, and we really don't have any control, even though we're paying all that money." Virginia Tech's White sees this, too. "From the parents' side, they can feel stuck, like the door's closing in their faces."
Drexel's Hoefling agrees that high schools and colleges could do better at helping parents let go. As for what his program's mentors are doing to help ASD students, he says, "A lot of it is just general problems that any late adolescent or early adult might encounter when they're making the transition to college. Some of it is academic. One of the first things we do is try to make sure the student is on sound academic footing, because we're not going to be able to help them if they're not here. After that, a lot of it is helping students acquire adequate interpersonal skills and self-advocacy, which is something that's not that unusual for students not on the spectrum, but is more nuanced for students with ASD."
He goes on to tell the story of a student who asked his mentor with help on learning "how to flirt," and how they debated internally about whether that was appropriate. Finally they determined, "That's just an elaborate type of interpersonal communication, and it's what young adults should be doing, developing the skills to form more intimate relationships. He's calling it flirting, but really it's just a different type of friendship."
Because people on the spectrum process and express information and emotions differently than the neurotypical, their struggles can magnify issues that everyone deals with. How do we make friends? How do we manage our time? How do we ask for what we need? How do we lead lives that are both productive and personally satisfying? These are questions that are often internalized but unspoken — which means they often go unanswered, leaving people feeling stymied and depressed.
The success of early intervention programs for autistic kids hasn't just had the effect of helping with the "mainstreaming" of primary and secondary students with autism. It's also forced teachers and administrators to think about how different children learn and mature in different ways. Now, as the rising autism spectrum generation heads into young adulthood, parents and institutions alike have another opportunity to reevaluate the ways they operate, through atypical eyes.