Some parents worry about what happens to their college savings if their child doesn’t go to college, perhaps because the child is later discovered to be a special needs child. There are options for using leftover 529 plan money, such as changing the beneficiary to a sibling or a parent. But, some special needs children can go to college, especially high-functioning children on the autism spectrum.
Special Needs Expenses Add to College Costs
These children may need even more money to pay for college.
When an autistic child graduates from high school, they lose the wraparound services that help them succeed in high school. Some colleges have special programs for autistic children, but at an additional cost.
These programs cost thousands of dollars per term, adding tens of thousands of dollars to the cost of a college education. You’ll probably need to save an additional $75 a month or more from birth for a college-bound autistic child.
Autism Diagnoses are Becoming More Common
Diagnosis of autism spectrum disorders (ASD) has increased perceptibly in the past several decades. Center for Disease Control (CDC) estimates from 2014 put the rate of diagnosis at 1 in 68 children — a 30% increase from just two years prior. A University of Iowa study from 2018 suggested an even higher percentage — 1 in 41.
The reasons for the increases are unknown.
Better diagnostic batteries may capture a greater number of cases than more limited earlier incarnations. Unknown environmental factors may also be contributing to the rise.
Development of Support Services for Autistic Children
Autism disorders are generally characterized by difficulties with social interaction combined with repetitive patterns of behavior, along with a suite of associated behavioral and cognitive difficulties. Severity varies considerably; autistic people range from highly functional to nearly incapacitated by their condition.
As more children and their families confront the unique challenges presented by the autistic mind, more sophisticated support services have emerged, most of them created by motivated autistic individuals and their loved ones.
While this has proven to be a boon to younger children and their families, young adult autistic people may find that the support they were accustomed to during their early years of schooling tapers off once they reach college age. With perhaps 50,000 autistic children reaching the age when most kids begin pursuing higher education each year, this has left a significant vacuum to be filled.
Challenges Faced by Autistic College Students
Though advocacy organizations and individuals have developed innovative models to help autistic college students adjust, many high-functioning autistic students who are intellectually capable of college-level course work nonetheless find that the college experience is not particularly accommodating of neurodiversity. The 2019 film Autism Goes to College tracks the challenges faced by a group of autistic students.
While autistic students may excel in mathematical and logic-driven fields, their social impairments can be a significant obstacle in meeting the educational requirements for such degrees. Because the disorder occurs on a spectrum, it has been difficult to develop a higher education framework that takes into account the needs of all autistic children.
Nonetheless, doing so is increasingly important: some 47% of autistic children enrolled in college per a 2011 Department of Education study, though only 35% earned a degree. A 2012 study found that only 34.7% had even attempted college. These rates are slightly lower than those for other students with disabilities and decidedly lower than those with no disabilities.
This underscores the need for autistic students and their families to be proactive in planning for college and the need for institutions of higher learning to plan for the requirements of an increasingly neurodiverse population. While some colleges do offer programs tailored to the needs of autistic students, they may come at an additional cost — an extra $3,000 a semester per some estimates.
A 2016 study found that 63.6% of autistic college students were satisfied with their education, but only 27.3% felt that their social needs had been met.
Studies on the subject are lacking, with a 2014 survey of the academic literature finding a mere 20 articles that studied the autistic college experience in any depth. Thus, it remains incumbent on autistic students and their families to determine the best path toward higher education for this unique cohort.
Steps to Take Before Enrollment
College preparation is daunting even for non-disabled students. The array of factors facing autistic students is even greater given their special challenges.
The legal mandates for primary and secondary education are different from those for higher education. While during high school, autistic students are covered by the Individuals with Disabilities Education Act (IDEA), this coverage ends with graduation. Protections under the Americans with Disabilities Act (ADA) and section 504 of the Rehabilitation Act, however, persist.
While these protections do mandate reasonable accommodations for disabled individuals, including those with autism, funding for targeted programs is not as prevalent. And established support systems are consequently weaker.
Rather than relying on the system to identify areas in need of support, autistic students and their families will find that they need to be proactive in contacting college disability offices and seeking out the necessary services.
Though of course families can assist indirectly, the Family Educational Rights and Privacy Act (FERPA) puts the onus on the students themselves; parents cannot access a student’s educational records without permission from the student once they turn 18 or are enrolled in college.
Develop a Transition Plan Early
For students who do not have disabilities, the transition to college may seem like more of a natural progression. There are established programs, structures, and expectations in place: the path has, to an extent, been cleared. While high-functioning autistic students may make use of these paths, they are likely to encounter obstacles that will not present themselves to neurotypical students.
It is thus imperative that these obstacles be anticipated and obviated as early as possible. This usually means developing a plan for college transition far earlier than might be typical for other students.
Assessing the students’ strengths and which institutions might be most suited to them is a long and involved process. Waiting until junior year of high school will not be tenable for many autistic students.
In addition to discerning areas of academic strength, students with autism must cope with deficiencies in other areas of life that may not present in neurotypical students.
Executive functioning is perhaps the most important of these. The more-rigid structure of secondary education, and the support staff that implement it, will be largely absent for college students. Thus, they must hone these skills earlier in their education and be prepared to manage basic tasks like self-care and organization of academic work on their own, even when support systems are still in place.
Unfortunately, this is a developing area of study: much of the current literature focuses on the social experience of autistic college students rather than the academic experience.
Modifying or managing certain behavioral tendencies that will be viewed as inappropriate in most college classroom settings should also be a priority. Pacing, talking to oneself, failure to participate in discussions or inability to restrain speech can all present as problems for autistic college students. Awareness of how these behaviors will be perceived, and means of compensating for them are skills that will be essential as the autistic student matriculates.
Further, likely consequences of stress, such as anxiety and depression, should be anticipated, and plans should be put in place for managing them through counseling services and medication. Many autistic college students report being overwhelmed by the barrage of shifting social and academic responsibilities that come with the pursuit of a degree. A 2014 study noted that 42% of college students with autism suffered from depression and 61% reported loneliness.
The two main tests used to determine college entrance eligibility, the ACT and the SAT, are daunting to most students. While autistic students often excel academically, the conditions under which these tests are administered may prove to be a particular obstacle to the neurodiverse population.
Autistic students often require rooms free of distractions and extended periods of time to complete these exams. Securing the proper conditions for test administration appears to be somewhat unreasonably difficult under current conditions, so it is advisable to begin assembling application materials as early as possible.
According to the College Board, which administers the SAT, a current, formal diagnosis, along with descriptions of treatment and functional limitations are required for those seeking special testing accommodations.
Many disability advocates were appalled to see these special conditions exploited by the cabal that perpetrated the recent college admissions scandal, in which several Hollywood actresses were caught gaming the system to secure admission for their children at prominent universities. Among the strategies they used was the disingenuous claim that certain students were disabled when they were not. Doing so allowed them to take advantage of testing conditions reserved for ASD and other disabled students.
Choose the Right College
It is well worth seeking out universities that have established programs catering to the needs of autistic students.
These programs provide support services that address:
- The transition from high school to college, such as pre-orientation programs
- Coaching to discuss academic issues and self-care/wellness
- Social competence, such as help making friends, and self-advocacy
- Career readiness programs to teach soft skills and prepare autistic students for employment and life after college
Other helpful services include note taking, special testing allowances, counseling, and support groups for like-minded students.
Identifying such services is key to ensuring that the needs of autistic students are met in the higher education environment. Assessing the strengths of these services at a given institution are major factors in determining whether it is suited to the needs of a given autistic student.
Investigate Support Services
Assessing the strength of the services that will support ASD students is essential. A select few colleges actually provide specific programs for autistic students. The rest have disability offices that may or may not be equipped to address the specific needs of the autistic student.
Autistic student groups are becoming an increasingly common feature on campus. Reaching out to these groups may be worthwhile. The advice of other autistic students who are several years into their experience at a given institution will likely be more valuable than the generic tips provided by well-intentioned but unspecialized disability service administrators.
Pre-enrollment programs, which may or may not specialize in the needs of autistic students, can be a valuable investment. By putting autistic students through trial runs, these programs can help them to develop the routines that will assist them in adapting to the rigors of the undergraduate experience.
The transition from high school to college can be particularly challenging, since autistic children do not always handle change well.
Some colleges facilitate roommate pairing that matches autistic students with others who have the same needs or allow for single rooms for students who most need them.
It is also worth testing the strength of counseling services on campus. If the available counselors are not attuned to the specific needs of the autistic students, the campus may not be a good match. Consistent counseling for autistic students is imperative, not only in dealing with primary symptoms but also in managing how secondary symptoms such as anxiety and depression manifest under stress.
Financial Aid for Autistic Students
Financial aid is crucial to most students and may be particularly so to ASD undergrads, who will likely incur additional expenses.
A variety of scholarships are available to ASD students. Many offer only small amounts, so it is advisable to apply as broadly as possible.
Be sure to investigate local sources of funding as well as national programs.
Special need services and disability-related expenses are part of the official definition of a college’s cost of attendance. However, the family may need to appeal to the financial aid office to have these costs added to the official student budget and considered when awarding need-based financial aid.
The cost of special-needs services is a qualified higher education expense for 529 college savings plans. So, parents can and should use a 529 plan to save for the cost of support programs for autistic students in addition to saving for college costs.
ABLE accounts, also known as 529A accounts, are tax-advantaged savings accounts for disability-related expenses. They are modeled after 529 college savings plans, albeit with a different set of qualified expenses and a limit of one account per beneficiary. ABLE accounts are similar to a special needs trust.
However, ABLE accounts have a confiscatory provision (26 USC 529A(f)) that transfers any leftover money to the state upon the beneficiary’s death. It may therefore be better to save in a 529 college savings plan and rollover funds to an ABLE account as needed to cover the beneficiary’s qualified disability-related expenses.
ABLE accounts (with balances under $100,000) and special needs trusts are not considered as assets on the beneficiary’s Free Application for Federal Student Aid (FAFSA) or the FAFSA of the beneficiary’s siblings. However, the CSS Profile form does require these funds to be reported as assets. Families should ask the college financial aid administrator to disregard these funds as assets and distributions as income when determining the student’s eligibility for need-based financial aid.
Modifying the College Experience to Suit the Autistic Mind
Some ASD students will be equipped to handle the standard college experience with some simple modifications and therapeutic support. An increasing number of institutions provide structured group sessions for highly functional students who nonetheless benefit from interaction with those who are dealing with similar issues.
Dual enrollment programs, where high school aged students take college classes while still receiving the intensive support typical of a secondary school education, can be helpful to many ASD students in slowly adjusting to the increased rigors of higher education.
A small number of colleges offer group living situations especially for autistic students, which may help to create support networks and alleviate some of the anxiety that comes with having special needs. Others may allow ASD students to live by themselves, which can be helpful in creating a zone where they can retreat from the social stresses of the college environment and concentrate on their work under conditions that they can, to some extent, control.
A handful of colleges, such as Landmark College in Vermont, cater exclusively to autistic students and others with learning disabilities.
Others may need to consider taking more drastic measures to adjust for their needs. Some autistic students and their families have reported that community colleges or trade schools offered an acceptable compromise. While still living at home, they were able to take classes for college credit and make a slower transition to full-time living on campus once they had completed associate-level coursework.
Even those whose behavioral and social functioning may not allow for much classroom time without an in-class assistant may find that they can make progress toward a higher degree through online coursework, which allows them to approach the content at their own pace in a controlled environment.
Selecting an appropriate area of concentration for ASD students can make or break the experience. The often highly systematized tendencies of autistic students can lend themselves to such fields as mathematics and computer science. While few universities actively recruit autistic students, it is worth reaching out to programs that seem appealing, as they may have experience in dealing with autistic students that is not overtly advertised.
Self-Advocacy for Autistic Kids in College
For ASD students who do decide to live on campus and pursue a typical collegiate experience, self-advocacy will be among their most important adaptive capabilities.
Because they may be accustomed to having adults advocate for them during their primary and secondary education, it is important to hone these skills early, in controlled settings. Adult caretakers should be careful to include them in conversations about their special requirements so that they understand what they are and how conventional educational situations need to be tweaked to meet them.
Even simply practicing the conversations that may be necessary with college professors and administrators to secure support and accommodation can be valuable.
Guides such as the Navigating College Handbook on Self Advocacy written by autistic students, can provide tips that take into account the difficulty of discussing ASD needs with those who may be unfamiliar with them.
The transition from secondary to higher education can be bumpy for even the most well-equipped, intelligent neurotypical student. For ASD students, it may range from stressful to truly traumatic. Mapping out the experience starting at an early age can make all the difference. Because few centralized resources exist, plumbing the internet and social networks for guidance in developing an individualized plan is necessary in the current environment.