Second in a series of articles on mental health.
A knife to the back reportedly brought Matthew Finnigan out of the fantasy world of his beloved video game and into a devastating reality. The 26-year-old Monterey Peninsula College student died in the fall of 2010 after a friend allegedly stabbed him with a knife that he had taken from the kitchen and hidden up his sleeve.
The 21-year-old alleged killer, James Torrey Hill, later told a police officer that he had “a general desire to kill someone” since he was young and had struggled with the fantasy throughout his life, according to reports in the Monterey Herald and the California State University student publication Scene Magazine. Hill is currently awaiting trial in California. (Editor's note: Since this article was original published, the trial has been delayed for the fourth time.)
The young men, both video game enthusiasts, met through College Living Experience (CLE), a private college support program that provides services for young adults with special needs, such as autism and ADHD. Hill does not have autism, but may have a mental illness. Finnigan had a history of schizophrenia, but his ASD may have been what made him particularly vulnerable.
Finnigan’s mother Patricia told Scene last year that her son was bullied growing up for being socially awkward. He believed people were out to get him. He may not have been able to distinguish when he was truly in danger. He mentioned online that he thought somebody wanted to kill him, but it is not clear if he reported any specific concerns about Hill to anybody. The Finnigans have elected on the advice of their attorney to wait to talk further with Autism After 16 until the conclusion of impending criminal and civil suits, but Patricia told Scene that she thought allowing Hill into the CLE program was “like putting a wolf in with sheep.”
There are college support programs sprinkled throughout the country that serve students with autism. These programs have the potential to improve the futures of young adults who might otherwise fall by the wayside. Indeed, more than a third of young adults with an autism spectrum disorder lack employment or education in their first six years after high school, according to a study by researchers at Washington University, SRI International and Vanderbilt University.
But each college support program offers a different level of supervision and support. Some programs expect students to avail themselves of services and to be fairly independent. Others heavily coordinate and monitor students’ actions. While CLE employs Resident Assistants as resources for students as well as psychologists to oversee social/emotional success (but not to provide therapy), students are not supervised on a 24-hour basis. Students are expected to have a high level of independent functioning and to attend nearby colleges or vocational schools much as typical students do, but with extra academic support.
This type of support model, however, may present problems for some students with ASD. It is not uncommon for young adults with autism to develop comorbid mental health conditions that may become more pronounced during college years. In addition, students with autism may be more vulnerable to bullying and violence—even in adulthood—than their non-autistic peers. So the Monterey incident, albeit the first homicide in the program’s history, raises the questions: With the possibility of comorbidity in people with autism, how can parents trust a particular program to detect when mental illness is emerging? And how can a vulnerable student be expected to report if a fellow student is showing signs of an emerging mental illness?
This question is particularly pressing following the Connecticut massacre. Adam Lanza, a bright 20-year-old who may have been diagnosed with Asperger's syndrome, likely had a psychotic break before he killed his mother, then shot his way into an elementary school and killed 20 children and six adults. He had reportedly attended Western Connecticut State University a few years ago, where he struggled to fit in. The few classmates who remember him reported that he was extremely quiet and shied away from social situations. There is no way of telling if the tragedy would have occurred had he received better support in college. What would seem to be clear, however, is that attention needs to be paid—both by parents and by professionals—to symptoms of emerging mental illness (distinguishing between ASD-related behaviors and those which may be linked to mental illness) and to helping young adults access mental health care when needed.
College is stressful for everyone and there is no way to predict how any student will react to the pressure. But, for students with autism, it can be especially overwhelming. Such students are used to a much higher level of support than are neurotypical students entering college. And they are not used to being expected to ask for help when they need it.
“Students with autism don’t learn how to self-monitor or self-regulate on their own,” said Sarita Freedman, a clinical psychologist and author of the book "Developing College Skills in Students with Autism & Asperger’s Syndrome." “Parents have to look at the services a program is offering and whether it expects students to independently take advantage of counseling and other supports. You can’t assume a student will have the initiative to participate on his own.”
Recognizing Risks and Preparing for Potential Problems
Challenges a student with autism may face in college can range from simple misunderstandings to serious situations that may put him or others in danger, Freedman said.
For example, she said, a student with Asperger’s syndrome who is characteristically rigid when it comes to rules may tattle on his roommate if he spies alcohol in the dorm fridge. A more socially acceptable choice may be to first discuss his concerns with his roommate or mentor.
A student jumped to conclusions and learned this lesson the hard way while enrolled in The College Support Program for Students with Asperger Syndrome at the West Virginia Autism Training Center at Marshall University in Huntington.
“The student called the police because he knew it was ‘illegal’ to have beer in the dorm,” said program coordinator Rebecca Hansen. “But they were root beer bottles that looked like beer bottles. We try to encourage students to go to their roommate or mentor first if they think something inappropriate is happening.”
On a more serious note, the onset of many mental health disorders occurs when students may already be in college. If a student shows mild signs of anxiety or another mental health challenge, Hansen said, a program may first try reducing the number of classes a student attends and increasing his instructional accommodations, such as breaking down assignments into manageable chunks.
But some college support programs may not be equipped to handle escalating symptoms of mental illness in their students with autism.
“We had a student who began to suffer such severe social anxiety, he started to talk about harming himself,” Hansen said. “That was out of our realm of expertise, so we recognized it would be better for him to get back to his home environment where there were more mental health providers and he would not have the stress of school on top of everything else.”
Hansen and her colleagues were able to identify the student’s struggles early before he hurt himself because he often came into the center to talk despite the program’s not having any residential support, she said. Another student may have isolated himself and the program may not have recognized anything was wrong until he accumulated absences or someone found that he’d harmed himself or someone else.
It is unclear what CLE staff knew regarding the extent of alleged killer Hill’s purported mental illness, but Finnigan had reportedly posted concerns online that he thought someone wanted to kill him. (In an email response to AA16's request for information, CLE president Stephanie Martin responded, "There is a pending criminal trial which involves a former CLE student and CLE does not want to interfere with the justice process by making any comment. We are saddened by the tragic loss of Matthew Finnigan, which continues to affect the CLE community, but CLE remains committed to its mission of assisting students with unique learning needs pursue their goals." ) The Herald reported testimony that “Two acquaintances told police disturbing stories about those preceding weeks. One of the men said he was watching television with Hill when Hill suddenly began choking him and asked him if he was ready to die. The man said he began to black out before Hill stopped. The other witness said Hill had told him he could kill Finnigan any time he wanted and get away with it.” Often students with autism may not report their concerns to anyone.
“One of the biggest issues in people with autism is they have a lack of awareness about when to ask for help,” Freedman said. “They need to be taught to ask for help when they start to feel different or are confused about a situation." Over the years, Freedman has worked with students who have gone hungry and gone without medication because they did not think to ask when their college cafeteria was open or know how to take and refill their medication without their parents' direction. Programs may not notice something like that is going on until a student falls into a deep depression and isolates himself. Medication missteps are not uncommon among students with autism, Freedman said. Yet college support programs usually expect students to be able to medicate independently.
Staff members at Marshall University’s program help students develop visual schedules to aid in keeping track of their medications. UA-ACTS helps monitor students’ medication use, working closely with on-campus psychiatrists.
But many youths have to be taught a step-by-step routine to take and refill their medication before entering college, Freedman said, because they often lack the initiative and instinct to carry out such basic necessities on their own.
“Parents have to teach their child to take his medication every day at a set time and develop routines for filling his pill boxes and calling in refills,” Freedman said. “The student should learn that when he has a week or so left of medication, he has to call the pharmacy to get a refill.”
Parents also should keep in mind that not every program offers mental health services, Freedman said, so they may need to connect their child with a new psychiatrist near campus if he is going away to college and already has a mental health diagnosis.
“Part of therapy is learning coping strategies,” she said. “Students also have to learn how to tell if their medication is not working. I recommend a family meet with a new mental health professional a couple of weeks before school starts because it’s very hard for people with autism to meet new people and go somewhere new. They’re more likely to go alone if they’ve already met the person with their family.”
Navigating the Admissions Process
Many programs accept students who have comorbid mental health disorders, such as anxiety, depression, bipolar disorder and schizophrenia. Very often these programs expect the mental illness to be managed at the time of enrollment. However, it can be difficult to predict how the stress of college classes and independent living might impact a mental health condition.
Such programs often examine an aspiring student’s latest evaluations and transcripts to determine the level of support the student needs and if that level matches what they can provide. They usually also interview the student and his parents and seek permission to speak with past clinicians. And they typically administer rating scales. They collect information from all of these sources to help them determine the student’s current independence level and ability to use coping, problem-solving, and organization skills.
“We also look at students’ level of motivation,” said Sarah Ryan, program director at the University of Alabama Autism Spectrum Disorders College Transition and Support Program (UA-ACTS). “There needs to be some kind of motivation toward a goal, such as completing a particular degree. Their parents may want them there, but students have to want to show up because we can’t knock on their door every day and drag them to class.”
The problem is parents sometimes omit or misrepresent information about the mental health of a student with autism during the application process. This can happen intentionally or inadvertently. So individual college support programs have to ask the right questions.
“I may look at a parent’s answer in a questionnaire saying that her child had no anger management issues, but then see in other records that he had been expelled for hitting another student,” said Maggi Sanderson, national admissions coordinator at the College Internship Program, a postsecondary program with multiple locations nationwide. “I may find out it was because another student was bullying him, but then I’d want to look at whether it was an isolated incident or something that happens all the time.”
Many students with autism also do not want to accept that they need support to succeed in college, Freedman said.
“A lot of times they will say that they are so glad they graduated from high school and don’t have to have special services anymore,” she said. “There is a real lack of self-awareness. They say, ‘My parents wanted it for me, but I never needed it.’”
Weighing Programs’ Available Supports
Some students may hit snags as they enter college if they were included in regular education classrooms most of their time in primary and secondary school, Freedman said. Students may not have received much life skills training, depending on the conscientiousness of their high school team. So college support programs that offer such activities may help retain students in college.
Some programs provide housing support for students. CIP students, for example, live in apartments rather than dorms, but interact on a daily basis with residential staff. Staff members do not usher a student through every minute of the day, but they do check in with him regularly to ensure he is following his routine, including going to classes. They also promote roommate relations.
For example, if a student with autism notices his roommate has drunk the last of the milk he bought at the grocery store, he may blow up, or he may internalize it, believing his roommate is taking advantage of him, Sanderson said. A staff member may remind the student that people make mistakes and similar things happen occasionally when you reside with others. He may also emphasize the importance of communication with his roommate about boundaries.
Some college support programs have students with autism live in traditional dorm rooms with nondisabled peers or in single rooms. Participants can often choose if they want to disclose their autism to their roommates and others. They may pair up with mentors who meet with them a few times a week. Mentors at UA-ACTS, for example, are psychology graduate students who can offer advice if personal or academic concerns are overwhelming a student. They may help the student seek accommodations from professors and regularly review their progress.
“The support tapers off over the four years the student participates in the program,” she said. “The ultimate goal is to step down services because they are not going to be going into the workplace with him. Our preference is to help the student address situations by himself.”
Programs differ in how often they communicate with parents about their youth’s progress. UA-ACTS, for example, begins by updating parents weekly, eventually tapering off and encouraging students to periodically update their parents. CIP sends home a few progress reports throughout the year.
“We let parents know their child is coming to us as an adult and needs to learn how to live independently,” Sanderson said. “Every student has an advisor who can be a point-person for parents to get in touch with, but we don’t want parents to be too intrusive with their children. They have to begin the process of individuation.”
Some college support programs also promote group activities to build the life skills of students with autism. UA-ACTS, for example, facilitates informal outings, such as movie nights, Ryan said. It also brings students together to discuss practical issues, such as self-advocacy and job applications. “We might discuss what strengths and challenges are associated with their diagnoses and how they may affect them in different situations,” she said.
Celebrating Student Successes
There is no way to tell if Hill could have been stopped before he stabbed Finnigan if their college support program offered heavier supervision or more accountability for use of support services. Finnigan reportedly claimed online that someone wanted to kill him, but it is unclear from available information if he told anyone close to him. Regardless of the steps parents and a program take to buoy a student in a college atmosphere, there will always be a degree of risk, as there is with any young adult at that age.
“I think sometimes these things happen and we can’t necessarily see them coming,” Ryan said. “I would hope with all of the supports we have in place, though, that we’d catch that sort of thing earlier rather than later.”
Indeed, when a mental health disorder is discovered early in a student and he receives appropriate intervention, the results can be inspiring, Sanderson said. A CIP student with Asperger syndrome developed severe anxiety and depression shortly after starting college because he was unable to connect with his peers and was so far away from his family. The program paired up the student with a mentor to help him work on his social skills and coping mechanisms while he was recovering at home so that he could more easily return to the program after his condition stabilized.
“We had to make sure he was stable because the situation was terrible for him,” she said. “But he is with us now and is doing beautifully.”
Next: Cognitive-Behavior Therapy for People with Autism and Mental Health Challenges
Full Disclosure Notice: The editor of this publication is a former CLE employee and was employed by the company at the time of Finnigan's death, although not at the center at which the incident occurred.
A student with Autism Spectrum Disorder typically exits secondary education between the ages of 18 and 21. At this point, the decision to move on to postsecondary education will likely be even more complex than the decisions regarding primary and secondary education. Postsecondary education is not an entitlement to anyone, and therefore the cast of characters in the decision-making process greatly diminishes. Gone are the IEP meetings where the conference table was once surrounded by therapists, teachers, advocates and governing interests. What was once free and appropriate education quickly becomes expensive and mismatched, if one’s not careful. So many parents find themselves asking: What considerations should we make when deciding on a postsecondary education program?
Ironically, the logical starting point when determining an appropriate postsecondary education placement is to think about the ending point. What are the desired outcomes from the postsecondary experience? In an effort to expand and encourage options for students with learning disabilities offered by institutions of higher learning, the U.S. Department of Education administers a discretionary grant under a program entitled Transition and Postsecondary Programs for Students with Intellectual Disabilities. Institutions awarded this grant are judged partly on their program’s ability to demonstrate student achievement in the follow areas of outcome:
These four outcomes seem straightforward enough, and encompass what every postsecondary program should strive for, regardless of participant learning profiles. Of course, the ASD student brings many challenges in achieving these outcomes, and there's no one-size-fits-all solution. It is therefore useful for students and families to consider each of these four desired outcomes as individual components, and identify goals and priorities within each one, resulting in a list of "must haves" and "nice to haves" when researching programs.
Models of Service
When desired outcomes have been determined, how is one to find a program that best serves those outcomes? "Postsecondary Education Options for Students with Intellectual Disabilities," published by the Institute for Community Inclusion, identifies three main types of postsecondary models for students with intellectual disabilities:
1. Mixed/hybrid model: Students participate in social activities and/or academic classes with students without disabilities (for audit or credit) and also participate in classes with other students with disabilities (sometimes referred to as "life skills" or "transition" classes). This model typically provides students with employment experience on- or off-campus.
2. Substantially separate model: Students participate only in classes with other students with disabilities (sometimes referred to as a "life skills" or "transition" program). Students may have the opportunity to participate in generic social activities on campus and may be offered employment experience, often through a rotation of pre-established employment slots on- or off-campus.
3. Inclusive individual support model: Students receive individualized services (e.g., educational coach, tutor, technology, natural supports) in college courses, certificate programs, and/or degree prorams, for audit or credit. The individual student's vision and career goals drive services. There is no program base on campus. The focus is on establishing student-identified career goals that direct the course of study and employment experiences (e.g., internships, apprenticeships, work-based learning). Built on a collaborative approach via an interagency team (adult service agencies, generic community services, and the college's disability support office), agencies identify a flexible range of services and share costs.
Just as there is a wide spectrum of students with autism, there must be a wide spectrum of service models to support those students. Even if one were able to pinpoint exactly the type of postsecondary placement one was looking for based on these categories, services are not conveniently listed this way. For example, when using "inclusive support model" as an internet search phrase, the results are multiple pages and reports with this phrase defined. An actual program offering this model proves more difficult to uncover. The good news is the need for viable postsecondary options is being brought to light in many forums. This identification of need combined with current funding sources is resulting in new programs and pilot programs aplenty. The bad news is that new programs are difficult to assess in terms of outcomes, making it a leap of faith to sign on. Not to mention, new programs start small, and therefore typically accept small numbers of students per year. So not only is one left hoping that the program will meet expectations, but the odds are stacked against the applicant being chosen when so few students are admitted each year.
Making a Good Match
Armed with a list of desired outcomes and basic information about the types of models that have potential for achieving these outcomes, the quest for postsecondary education begins. Bear in mind, the solution may not be a one-stop shopping experience. There may be a combination of service providers involved, creating a tailored program specific to a student’s needs and financial considerations. As you begin the process of researching postsecondary options, the desired goals and objectives should be held firmly in hand, lest you be swept away by the promise of well-meaning but unfounded programming.
The Models in Practice
The inclusive individual support model for postsecondary education is more commonly known as college with accommodations. Postsecondary schools are bound by Section 504 of the Rehabilitation Act of 1973 and Title II of the Americans with Disabilities Act of 1990, albeit to a different degree than school districts providing primary and secondary education. Accommodations are based on disabilities and individual needs. Typically the postsecondary school's disability services office oversees the development and implementation of accommodations, based on the student requesting support. Typical accommodations might include providing note-takers and extended time in taking exams as well as access to a campus testing center. Postsecondary schools are not required to identify or assess needs of students with disabilities. It is therefore up to the student to make sure necessary accommodations are in place.
Some colleges have embedded support programs that go much further than what the typical disability service office provides. These programs include additional supports for the degree-seeking student such as noncredit transition to college/independent living skills courses, tutoring centers, and student mentoring programs. These supports are typically fee-based with charges assessed in addition to traditional tuition and living expenses. It is important to consider whether or not the additional supports will be enough for success at college. What happens if the student stays up all night playing video games and misses class as a result? Is there an executive function disorder that needs to be reckoned with? Are there supports inherent in the embedded program that will check all the boxes in the “must have” column? Knowing the profiles of successful students in the program is invaluable information, as is foresight into what challenges the applicant student is likely to face in a college setting.
A college campus isn’t off limits to the student that isn’t a degree-seeking candidate. Programs classified as a substantially separate model aim to offer an approximation of university living in a fully supported setting. These programs are often staffed by graduate students in special education, and typically provide a supported residential component in addition to non-credit remedial academics and independent living skills classes. Descriptions of these programs often highlight inclusive socialization opportunities via such vehicles as “the campus fitness facility and other campus activities.” It would be well advised to note how these inclusive socialization opportunities present themselves. Strictly voluntary socialization opportunities are likely to be grossly underutilized by the population these programs are designed to support.
Private wrap-around support programs provide services as a separate entity from the postsecondary school. A wrap-around support program usually aims to provide a mixed hybrid option by offering academic, social, and independent living skills support. Students attend classes at a nearby college or vocational school that doesn’t offer an embedded support program. The wrap-around support program offers a combination of segregated and inclusive settings. The cost of these supports, which are only available to program participants, is entirely separate from the postsecondary school tuition, and may not include living expenses. The courses taken at postsecondary schools are typically mixed population and considered inclusive.
Doing the Math
Once desired outcomes are in mind, and the ideal type of program is identified, the next equally important consideration is cost. Financial concerns will always be near the top of any list of postsecondary education considerations. According to the National Center for Educational Statistics, the average cost of a private college education including expenses is nearly $35,000 per year. The vast majority of postsecondary programs available to students with learning, developmental, or intellectual disabilities require additional expenditures on top of standard tuition and living expenses. So it's time to ask the tough questions: Is the cost of tuition plus support justifiable, considering the long term need for financial support most ASD students are facing? Is the program focused on the student’s desired outcomes? Would individualized support (in the form of job skills training, for example) without the approximation of college life be more beneficial? It’s important to know what you’re getting for your money. And more importantly, what you’re not getting. Parents are often attracted to the cleverly written program brochure or website as the heart strings are pulled by the prospect of a struggling student actually attending college. When finding a program of interest, it’s easy to get excited and start researching “How do I get in?” However, a better question might be “What happens when I get out?” With that answer in mind, it’s then time to determine, "Is it worth it?”
Having considered the answers to these questions is probably the best defense against an expensive and mismatched postsecondary experience. The U.S. Department of Education’s Institute of Education Sciences, National Center for Special Education Research conducted a study of special education students leaving high school in 2001. The data compiled in 2010 shows that eight years after leaving high school, less than 10 percent of the students with autism were living independently. Only 24 percent of the population studied was competitively employed, earning more than minimum wage. While many students with ASD do pursue postsecondary education, less than half of those studied who attended had graduated after eight years. These statistics illustrate the fact that support of a student on the autism spectrum is a lifespan issue that goes far beyond the plan of a typical college student. Spending money and resources wisely on appropriate and meaningful skill development should be priority number one. Unfortunately, there is no one solution that fits every need for this population. Fortunately, more options are opening up. Discovering, pursuing, and seizing the right opportunity for the young adult with autism can be a rewarding venture. And if the opportunity’s utmost turns out to be subpar, don’t hesitate to change course.
Being a self-advocate in the autism community for the past several years has definitely had a few perks here and there.
Last night I had a dream that found me raging through my childhood home. For some reason, I was very angry with my family.
Every day I live with and struggle to compensate for my autism.
“I don’t think it’s safe to go,” I texted my sitter. “Let me call the office.”
I attended a focus group this week. A new venture is being developed with the intent of providing a unique six to nine-month internship experience for young adults with disabilities.
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