Many students and parents think about college. Is college a possibility? How can we best prepare? Where do we look? What do we ask for? All good questions. Many students on the autism spectrum do well academically, and graduate high school with grades that make them candidates for college.
We’ve all heard that one in 59 children are diagnosed with Autism Spectrum Disorder (ASD), according to the Center for Disease Control in 2014. The rates of children being diagnosed are rising fastest among those who have average or higher intellectual abilities. It’s estimated that globally about 49,000 students diagnosed with ASD graduate high school each year, and approximately 16,000 of them go to college.
National statistics in 2011 showed only 38.8% of autistic college students graduated. For many, the challenges at college have less to do with academic achievement than with other challenges related to ASD. They face challenges that are social and emotional, as well as with executive functions, independent living, self-advocacy, and communication inside and outside the classroom.
Look for and use resources
In addition to talks offered locally by special education, autism, or twice exceptional (2e) groups, resources such as AANE.org (Asperger Autism Network) have online webinars and groups on college planning for teens and parents. AANE also has a LifeMap program that helps pre-college students with skills and planning. Their resource website lists summer and residential bridge programs as well as colleges that are welcoming to ASD students: https://www.aanenetwork.org/colleges-summer-and-gap-year-programs.html.
In a high school or school district, parents could ask if graduates on the autistic spectrum currently attending college might come in for a discussion with college bound juniors and seniors. There are college fairs, where colleges send representatives to meet students and share information, but many students with autism find these events overwhelming.
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A gradual adjustment to college is for students to attend community colleges that allow commuters. Students can acclimate to the demands of college and try out clubs and activities such as theater or sports (I have one patient doing ultimate frisbee) while having the safety net of supports at home.
There’s no rule that says attending college immediately after high school is either necessary or best. Just as all people on the spectrum are individuals, the best college path is also highly individual. There are bridge programs that offer a supportive post high school experience to adjust to dorm living and the demands of college. Some are summer only and some are year-long programs that might include taking classes or working.
Having other pre-college experiences, such as jobs or internships, can be very helpful in building confidence. Ideally, a volunteer job or internship would be in an area of interest. For example, the National Institute of Health in MD has an internship program for autistic high school and college students in molecular biology that often leads to help with college/graduate school applications and jobs: https://hr.nih.gov/jobs/jobseekers-disabilities-applicant-information.
Thinking about how to prepare in high school? The idea is to build confidence, one step at a time. Schools are required to plan for post-secondary transition, although IEPs rarely are comprehensive in this area. It’s important to include the competencies a student will need, and at an appropriate level to intellectual ability. A volunteer job bagging groceries is not a pre-college skills training experience.
Consider the challenges
It’s important to consider the following challenges that attending to college might present:
Social skills groups in general have not been found to generalize well. Joining an activity at school or outside school provides social interaction with peers who share an interest. Summer programs (like Johns Hopkins) or camps focused on interests (computers, graphic design, arts) also can prepare students for social experience in settings with like-minded peers.
I always suggest teens develop a “tool kit” of strategies for handling difficult emotional times. Often OTs have identified sensory tools for relaxation, and other “tools” might include meditation, playing music, journaling, taking a time out to walk or to be somewhere quiet, visualization or mindfulness exercises, or anything else that works to ride out an inner storm. Students need to learn to identify trigger stimulations or recognize when feelings are building up.
Some individuals with autism have alexithymia—difficulty identifying feelings—so “early warning” strategies are important. If finding self-calming tools requires professional help, an IEP should include school counseling, or outside therapists can help.
Too often, we “help” our children by organizing work for them and then prompting them to initiate their work. At college, this organizational help won’t be available unless they ask for it, and they will need to initiate work independently, or set up structure to help themselves get going. As difficult as it is to let students struggle, it’s important for students to understand their needs for support.
It’s important to teach metacognitive skills: how to identify the components of a task, how to break it down into steps, organize materials, and plan time management. IEPs need to include modification of assignments to allow students time to go through this process.
Extended time isn’t always helpful; the backup of work that’s due just continues to grow. Other executive functions include initiation, making transitions and shifting, inhibition/focus, and self-checking work. IEPs should include these skills when needed, including what strategies will be taught and measured. Students need to learn to use areas of strength to accommodate challenges, for example, using verbal skills to talk through tasks.
Since colleges do provide meals, cooking usually isn’t essential, but independent self-management skills and self-care skills are critical. Getting up in the morning, eating well, getting sleep, hygiene, planning clothes, using transportation, buying needed supplies, and managing money are all necessary skills. Cellphones, computers, and apps can be helpful: in addition to alarms, timers, calendars, and notes, there are apps for what to wear, planning transportation, monitoring spending, and tracking exercise and sleep.
Self-advocacy and communication skills
Students with autism are often hesitant or unsure of how to express their needs, and it’s important to develop those skills. It’s also important to be sure teachers respond positively when students make that effort (unfortunately, one can’t take that for granted). Sometimes IEPs say “Student will self-advocate” with no specifics on how skills will be facilitated. Students generally don’t know what they missed or misconstrued. It can be important to identify common “misses” and to create strategies to compensate.
Assistive technology (AT) centers help students identify AT that might be useful. For example, there are smart pens that actually record a lecture as you take notes in a special notebook. Afterwards the pen replays the lecture at the point in the notebook where one taps. Find out about AT resources early so students can get used to them before college.
If your child has decided to attend college, choosing an appropriate college is essential to a successful outcome. What’s important is that there’s a good fit between the college and the student’s strengths as well as social, emotional, and academic needs. What appeals to any student can be somewhat random: the look of the buildings or the interests of the tour guide might decide the experience. It’s important to dig deeper into all the elements of fit: size, setting, resources, opportunities, activities, and career planning.
Some public high school college counselors will take the time to really know your child and give excellent advice. Some have huge caseloads and just don’t have the time. If financially possible, independent educational counselors take the time to know a student and visit college campuses so they know what they’re recommending. Some of these consultants specialize in special needs or twice exceptional (special needs and gifted) students. You will be investing a lot in college; it pays to maximize the likelihood of a good fit.
Self-disclosure of an autism diagnosis on a college application is an important initial decision. According to a 2017 study, only one in 225 college freshmen self-reported ASD, based on a study of over 2,200 students. Students of
ten don’t self-disclose because of a fear of being stigmatized, the fact they don’t feel they will need help, or they want to feel independent and that they can achieve on their own. Unless your child is applying to a special autism program at colleges, it’s okay to wait until after admission to disclose a diagnosis.
Your child can also wait and see if difficulties come up, and at that point go the Office of Disability Services. At any time, disclosure requires documentation (comprehensive evaluation within three years of admission and a high school Individualized Education Plan—IEP). What’s important is to research up front to be sure services appropriate for ASD and for your child are available if needed.
On college visits, ask questions. How large are classes? How accessible are professors? What kind of learning and emotional supports are there? Is there an individual advisory system, and how often do students meet with advisors? What majors and interest groups exist that might appeal to your child’s preferences? What kinds of dorms are there, and what kind of supervision?
(For example, for students who are averse to other students using drugs or drinking, there are “dry” dorms in many schools). Are there people with training in working with students with ASD? Whether a college program is specific to autism or not, many schools are becoming sensitive to the needs of autistic students. Are there stated goals for inclusion of all kinds of diversity, and is anyone in charge of making sure goals are implemented?
Here are supports schools might offer:
Academic: classroom accommodations, coaching or tutoring, goal planning/specialized advising,assistive technology, faculty mentors, learning skills supports, study groups
Social: Meal gatherings, programmed events, student organizations, social skills support groups, or individual coaching
Wellness: Housing accommodations, trained residence hall staff, specialized fitness programs, psycho-educational groups, wellness groups (nutrition, safety, LGBTQ)
Career: Career center help, career fairs, internships and apprenticeships, coaching, faculty mentors
There are lists of colleges with autism programs, and since they change over time in terms of staffing, programming, and student cohorts, I’m including links to some that recommend best colleges for students with autism. This lists college autism programs by state: https://collegeautismspectrum.com/collegeprograms/.
This link describes recommended colleges with autism programs: https://www.collegechoice.net/rankings/best-colleges-for-students-with-autism.
It’s important to ask about opportunities a school offers in areas of your child’s skills and interests as well as about what supports it offers for the challenges your child faces. Is there opportunity for strength-based learning (independent projects, working with professors) and for internships? Is one to one support available if needed? Are advisors assigned to each student? Can they pre-arrange meetings with students, or are meetings only on demand? Is there any tracking to identify students in trouble?
Another consideration in looking at colleges is what kind of post-college preparation exists. Some colleges offer internships, job interviewing skills, and help with job planning; some are primarily focused on getting the student through the college but have no preparation for post-college life.
Yes, even though you may have been focused on college since kindergarten, life goes on and there’s increasing emphasis on providing support for employment opportunities and skills for young adults on the spectrum.
College is another step in a path that is highly individualized, and paths can be bumpy. Many students have setbacks, drop classes to adjust the load, or change schools; this is true for all students, not just those with ASD.
As colleges learn to provide better support to autistic students and students learn to ask for what they need, the success rate will be rising. The track record of students with autism will be improving as understanding and awareness are increasing steadily.
This article was featured in Issue 109 – Attaining Good Health.