Autism, a neurological-based developmental disability, affects an estimated one in 166 people, according to a 2004 study by the Centers for Disease Control Prevention. Both children and adults with Autism typically show difficulties in verbal and nonverbal communication, social interactions and leisure or play activities, according to the Autism Society of America. Autism affects individuals differently and to varying degrees.
Experts agree on the following advice upon detection of Autism:
1. Seek immediate treatment for your child.
2. If possible, find someone to work with the child at least 20 hours a week, i.e. a therapist, teacher, parent, grandparent or someone from your church or group. Look for progress after one month.
3. Do not allow the child to sit and watch TV all day. Get them engaged and play as many games as possible that require taking turns.
4. New parents learning they have an autistic child must recognize immediately that they cannot do it all by themselves. They should immediately contact Autism societies or chapters to find resources, join support groups and talk with other families about their experiences.
5. Help the child to develop their areas of strength, particularly among high-functioning students with Asperger's Syndrome (a neurobiological condition characterized by normal intelligence and language development with deficiencies in social and communication skills), and get them job experiences during high school.
Marshall University in Huntington, West Virginia is one of the few colleges in the US that has a special program in their Autism Training Center, which works with Autism spectrum disorders like Aspergers. Although many colleges have counselors and staff familiar with Autism, only Marshall has a program tailored specifically for autistic students. The program serves three of the university's 16,360 students and may eventually accommodate 10; it will remain small by choice.
"The goal is not for all students with Autism to attend Marshall, but for the program to become a model for other colleges," says Barbara Becker-Cottrill, the Center's director. "The true goal is for students to have the ability to attend the university of their choice. Our work will be working with other universities on how to establish a program such as this on their own campuses."
Kim Ramsey, the Marshall program's director, had this to say, "The problem is, social and daily living issues are interfering."
This is not to be confused with a special education program. Like all students, they must meet and maintain the university's academic standards. The Center offers tutoring, counseling, a quiet space to take exams, and help in the navigation of the bureaucracy and social world of college, i.e. how to schedule classes, join clubs, buy books and replace ATM cards that don't work.
In a recent issue of the bimonthly, Asperger's Digest, Lars Perner, an assistant professor of marketing at San Diego State University who has Asperger's Syndrome, said, "How many college students have forms of Autism is impossible to determine as many go undiagnosed or are simply perceived as a little bit strange. The exact cause is unknown, although both genetics and environmental factors are suspected of playing a role. Some of these students might be able to get into college because of fairly strong academic credentials and a reasonable academic showing. That may not mean they will be able to stay in college." Perner is also the author of a college selection guide.
Sadly, most autistic students either drop out or don't even apply to college because they have difficulty with such tasks as doing all the paperwork, time management, taking notes and sitting for exams. Stephen Shore, who is finishing his doctoral degree in special education at Boston University and has been diagnosed with atypical development with strong autistic tendencies, said, "More programs like Marshall's were needed. I think they would do much better and there would be a much higher rate of success if this type of program were available elsewhere." However, as researchers learn more about Autism and public school services for Autism improve, more autistic students will graduate from high school and be academically, socially and emotionally prepared for college.
College Selection – Your Number One Priority
The following must be considered, but only after the family has visited the campus and is convinced their student will be able to "survive" at that school:
1. Accommodations: If proper accommodations are not made available to the student, then it would be futile to attend that particular college.
2. Curriculum: Ideally, there will be enough areas of interest for the student.
3. Setting: Urban or rural, close to home or far away, and a large or small student body are all issues that must be factored in.
4. Cost: Last but not least; like the 5th C when searching for that perfect diamond – is the cost. Paying for college is actually the easy part, because no matter what, you can borrow the money! And never lose sight of the fact that all the financial aid in the world is useless without that coveted admission ticket!
Some other criteria that should be particularly important for autistic students include:
1. A highly structured academic program
2. A second-to-none disabilities services program (or its equivalent)
3. A willingness to be flexible
4. Support for individual needs and a centralized counseling center
Experience with Autism is helpful, but the most important characteristics of the disabilities services program and counseling center are the commitment to providing individualized support and a willingness to learn about each student's disability and needs. Because of the learning differences of students with high functioning Autism/Asperger's Syndrome, they often benefit from tutoring, organizational and personal support services.
Sometimes, a smaller school is easier for students who learn better in a smaller and quieter environment. For students who will find the degree of independence and organization required for living at college to be intimidating, it can be helpful to live at home for the first year or two of college, and gradually make the transition to more independent living. Some colleges offer cooperative education programs, in which students alternate between taking academic courses and working in related jobs. Such programs have the ability to help students explore potential careers and develop essential work skills.
Academic Assistance and Accommodations
In college, students are given the responsibility of advocating for themselves. They can receive support from the disabilities services program or not, but they will have to be able to make many decisions for themselves.
In many colleges, the disabilities services program will write a letter to relevant professors indicating that a student has a disability and may need special accommodations. This letter might be the student's responsibility to give to the professor, or it might be sent out to each professor. In either case, it is then likely to be the student's responsibility to follow up with the professor and request specific help.
Many students will need coaching and support in order to do this. Some counselors may be willing and able to help, others will not. In many instances, it will be necessary and helpful to have a tutor. The disabilities service center will usually be able to assist with the required services.
Academic accommodations have been helpful as well as necessary for some students with Asperger's High Functioning Autism because they need a little longer to process information and organize responses. This can mean that they will take a little longer in responding to questions in class and should receive the required extra time on quizzes, tests and exams. Due to difficulties in processing and screening sensory information, a distraction-free environment may be important for ongoing studying and for taking exams.
Seating is often important in lecture halls. Sitting at or close to the front and sometimes in the center of the row, can make it easier to hear and understand. Some students find it easier to sit near the front but in an aisle seat, so that they have a bit more room to spread out and are less likely to be bumped.
Seating is sometimes on a first-come, first served basis daily, or for the entire semester. If this is the case, students should get to their first class early, or try to make preparations in advance. Some professors prefer assigned seating for the entire semester. In that case, students may need to talk to the professor in order to arrange for their special seating needs.
Some professors include class participation as a component of the grade and require recitals in front of the class and/or working together as part of a group. Such class requirements can be challenging for students with difficulties in oral communication or working together with others. In anticipation of this, students should be advised to talk to the professor about their disability early in the semester in order to attain special accommodations, if necessary, and the support and understanding of the professor which is always necessary.
Most students with Autism spectrum disorders need clear, systematic organizational strategies for academic work and most likely for all other aspects of daily living. Calendars, checklists and other visual strategies for organizing activities should be developed with the student.
Many students with Asperger's/High Functioning Autism will excel in courses that draw on factual memory and/or visual perceptual skills. An intuitive counselor or advisor can help guide the student to a curriculum that will capitalize on his or her strengths and interests.
The most difficult and challenging courses are those that require abstract verbal reasoning, flexible problem solving, extensive writing, or social reasoning. Such courses may be valuable to take, but could require extra time and support.
In her book, Pretending to be Normal, Liane Willey, an adult with Asperger's Syndrome, recommends taking courses in communication and psychology in order to improve social understanding and skills. "It is often wise," she advises, "to audit a course if it would take a long time to master the material."
A somewhat relaxed class load is often the best course of action, especially during the freshman year when everything is new. For some students, a reduced course load can help keep the stress levels more manageable.
A related issue is that many students with Autism need extra time for thinking about problems and for completing work. This means they will need more time than most students for reading and doing assignments. This should be taken into account in planning a student's course load so they will not be overwhelmed, which could have adverse consequences.
Social Groups and Activities
For some students, living on their own may be overwhelming as they often need more support than most freshmen for making social connections. All campuses have organized social groups and activities. Most students with high functioning Autism/Asperger's will enjoy participating in some of these, but will need guidance with finding the right groups and introductions.
Always consider the student's strengths and interests when looking for groups and activities. It might be beneficial to have someone, perhaps an older student, a mentor or advisor point out groups that would be of interest and help with the initial steps of becoming a participant. It may also be possible to mobilize other resources through Student Services, residence advisors and service organizations on campus.
For many students with high functioning Autism, it is preferable to have a single room. This will provide a sanctuary where they can control their environment, focus on their work and daily activities without distraction, and not be forced to engage in social interaction all the time. Having a roommate can be highly stressful, and most experts agree that to be without one initially is the best choice. However, it is strongly recommended to have a mentor nearby.
When the student is in agreement, it can be helpful to inform the residence staff of their disability and the areas in which support may be needed. It is best if the student can discuss their disability with peers. It can also be helpful to meet with other students in adjacent rooms to discuss why their behavior may appear to be odd at times.
The Daily 9-5
It will prove most helpful to identify the likely pitfalls and provide the student with written guidelines and checklists in addition to advance preparation and training. The following are various aspects of daily life on the average college campus.
1. Meal plans and their rules; where to eat at non-meal times
3. Spending money; budgeting
4. Using a campus ID and/or charge card
5. Dorm rules
6. Handling fire drills at any hour, especially in the middle of the night
7. Using communal bathrooms
9. Campus maps
10. Locating security personnel
11. Finding rest rooms
12. Using an alarm clock
13. Campus mail, e-mail and instant messaging usage
14. Library hours and how to get help from a librarian, and for that matter, anyone else
15. Lecture hall procedures
16. Learning about and participating in dorm activities
17. Student health services
18. Medical, non-medical emergencies and non-emergency procedures
19. First aid and how to take care of oneself during a minor illness (including how to get liquids and food when they're under the weather)
20. Finding time for physical exercise is important for many, not only for health reasons but also to help with stress management.
Plan Far In Advance
Thinking about these issues years in advance is necessary; doing something about it is mandatory! As part of the Individualized Education Plan process, each student should have a transition plan to learn the skills necessary for college. Many important skills that will facilitate success in college can be taught and practiced at home and while the student is still in high school. It is important that the student understand what his or her learning needs are, and the types of accommodations that will be helpful.
In college, students will probably find it helpful to talk to advisors and professors about these issues. This will be easier to do when it has been practiced in the more supportive environment of the home and the high school. At home, high school students should be learning and practicing daily living and independence skills so they will be able to be successful in college…
For further information about Autism and to view country artist Mark Leland's emotionally charged video, "Missing Pieces," a song for Autism, please visit Frinkfest.com [http://www.frinkfest.com], and the following:
The PARIS database contains details of all colleges known to The National Autistic Society that cater for students with autistic spectrum disorders. It is available at http://www.info.Autism.org.uk and is updated regularly. If you require further information please contact the NAS Information Centre.
Tel: + 44 (0)20 7903 3599 or 0845 070 4004.
http://www.about-disability.com/disability-aids/college-financial-aid-disabled-student-99.html College financial aid for disabled students.
A Few Resources
There are brief discussions of college-related topics in Liane Willey's book, Pretending to be Normal, and in A Parent's Guide to Asperger Syndrome & High-Functioning Autism, by Sally Ozonoff, Geraldine Dawson, and James McPartland.
Aquamarine Blue 5: Personal Stories of College Students with Autism, edited by Dawn Prince-Hughes, has 12 essays and an appendix of tips. A recent addition is Succeeding in College with Asperger Syndrome: A Student Guide, by John Harpur, Maria Lawlor, and Michael Fitzgerald.
Eric Clearinghouse on Disabilities and Gifted Education, One of their many useful articles, ERIC EC Digest #E620, is "Selecting a College for Students with Learning Disabilities or Attention Deficit Hyperactivity Disorder (ADHD)."
A web site from the United Kingdom, University Students with Autism and Asperger's Syndrome, has many helpful links and some interesting articles by university students with Autism spectrum disorders.
North Carolina State University has a useful guide on transitioning from high school to college on their web site. Edmonds Community College and the University of Washington Autism Center.
Experts On The Subject
Dr. Ami Klin, http://www.info.med.yale.edu/chldstdy/Autism/staff.html
Dr. Klin is the Harris Associate Professor of Child Psychology and Psychiatry at the Yale Child Study Center, Yale University School of Medicine, and Yale – New Haven Hospital, New Haven, CT. He obtained his Ph.D. from the University of London, and completed post-doctoral fellowships in developmental psychopathology at the Yale Child Study Center. He coordinates psychological evaluations at the Yale Child Study Center Developmental Disabilities Clinic, and the diagnostic, neuropsychological, and social cognitive assessments of three large, federally-funded program projects focused on behavioral and neurobiological aspects of Autism and related conditions. Dr. Klin is also Chief of Psychology at the Child Study Center.
His research activities focus on psychological and biological mechanisms impacting on socialization, particularly as these mechanisms are expressed in individuals with Autism and related severe social disabilities. These studies include novel techniques such as the new eye-tracking laboratory that allows researchers to see the world through the eyes of individuals with Autism, as well as to measure their patterns of viewing of naturalistic social situations. He is the author of over 80 publications in the field of Autism and related conditions. He is also the co-editor (with Drs. Fred Volkmar and Sara Sparrow) of a textbook on Asperger Syndrome, published by Guilford Press, and the third edition of the Handbook of Autism and Pervasive Disorders.
Carol Gray, http://www.thegraycenter.org
President of the Gray Center, Gray initiated and developed the use of Social Stories with students with autistic spectrum disorders, and has written several articles, resources and chapters on the subject. Gray co-authored the first article describing Social Stories, entitled Social Stories: Improving Responses of Students with Autism with Accurate Social Information, published in Focus on Autistic Behavior in April of 1993. Shortly thereafter, Gray edited the first book of Social Stories, The Original Social Story Book (1993), followed by New Social Stories (1994), which is now under the title, The New Illustrated Social Story Book (revised 2000).
Gray has written several chapters on the topic of Social Stories, including: Teaching Children with Autism to "Read" Social Situations, in Teaching Students with Autism, Methods to Enhance Learning, Communication, and Socialization, a text edited by Dr. Kathy Quill (1995, Delmar Publishers Inc.); Social Assistance, in Higher Functioning Adolescents and Young Adults with Autism, edited by Dr. Ann Fullerton (1996, Pro Ed Inc.); and Social Stories and Comic Strip Conversations, in Asperger Syndrome or High Functioning Autism? a text in the Current Issues in Autism series, edited by Dr. Eric Schopler, Dr. Gary Mesibov, and Dr. Linda Kunce (1998, Plenum Press).
Most recently, Gray has edited My Social Stories Book, a collection of Social Stories specifically written for young children. In addition, Gray has extensively researched the topic of bullying. Gray's Guide to Bullying looks at bullying as it relates to people with ASD (The Morning News, winter 2000, spring 2001 & summer 2001). She has also worked on a curriculum to teach students how to avoid violence.
Gray has developed a variety of other resources addressing additional topics related to the education of children and adults with autistic spectrum disorders. She is the author of What's Next? Educating Students for Success in the Community (1992), Taming the Recess Jungle (1993), and Comic Strip Conversations: Colorful, Illustrated Interactions with Students with Autism and Related Disorders (1994). She is also the editor of The Jenison Autism Journal (formerly The Morning News), an international newsletter that shares information among those working on behalf of individuals with autistic spectrum disorders. Gray is the recipient of the 1995 Barbara Lipinski Award for her international contribution to the education of children with autistic spectrum disorders.
Stephen Shore, http://www.Autismasperger.net
Diagnosed with "Atypical Development with strong autistic tendencies" Stephen Shore was viewed as "too sick" to be treated on an outpatient basis and recommended for institutionalization. Nonverbal until four, and with much help from his parents, teachers and others, Stephen Shore completed his doctoral degree in special education at Boston University with a focus on helping people on the Autism spectrum develop their capacities to the fullest extent possible.
In addition to working with children and talking about life of the Autism spectrum, Stephen presents and consults internationally on adult issues pertinent to education, relationships, employment, advocacy, and disclosure as discussed in his book Beyond the Wall: Personal Experiences with Autism and Asperger Syndrome and numerous articles. He also serves on the board of the Autism Society of America, as board president of the Asperger's Association of New England and is on the Board of Directors for Unlocking Autism, the Autism Services Association of MA and the Asperger Syndrome Coalition of the US.