The Roadmap and All the Paths

Excerpt from Chapter Two

I’m writing a book. My goal is to have a rough draft completed by the end of June. This is an excerpt from Chapter Two, which discusses the transition time line and maps out options for the future. No paywall this week, but please subscribe to support my work.

Freshman year evaluations and conversations with student, teachers, and outside professionals should give parents useful data to help them make tentative plans plans. Odds are, your school isn’t telling you about all the options for autistic students; it doesn’t have staff who know much about that. So, I’ll roughly lay out all the options here. In subsequent chapters, I’ll drill down into the details of each plan.

It’s important to first see the full roadmap, so you can start making informed choices. With greater information about all the options, you and your student can make long term plans and avoid falling off that cliff. You don’t want to first start learning about your options, when you student has his diploma in hand. Sometimes it takes years of good preparation to make a plan actually happen.

That broad overview is also necessary, because your student might start down one track and then switch to another a few years later as your child grows. Or they might be running along multiple courses at the same time. One year, my son attended an 18-21 transition program in the morning, took an online community college class in the evening, and collected disability support from the government. Sometimes these plans are not an “or,” but an “and.”

Our kids’ futures are fluid, and we have to be both flexible and informed, so together we can might the best choices. Especially since we start our planning process so early, just know that these plans are guesstimates and goals with nothing set in stone. Freshman year plans are not destiny.

Typical Colleges With Regular Supports

If your student has an average to above average IQ, is placed in a general education setting for his academic classes in high school, enjoys school, and blends well with his peers, then a typical four-year or two-year college might be the right place. With just a little extra help, some students with autism can succeed at a typical college.

There are two types of colleges to consider - four-year colleges and two-year colleges. I’m a big fan of having neurodiverse students start locally at a community college, where they can take one or two courses and gradually learn more about college norms and expectations. But some students might be ready to dive into the full college experience.

All colleges have an office for students with mild disabilities, sometimes called the Office for Specialized Services or The Office of Disability Services. It usually takes several months to get registered with these programs, so start the process long before school starts. Students must provide evidence of a disabilities, like an old IEP or school evaluations. Then they will meet with an administrator who will discuss what services they offer students. Once they finish that intake process, students will get a "Letter of Accommodations" that they send to each one of their college professors every semester.

To prepare for this track, the transition sections of IEPs should clearly state their intensions for college. Schools and families then must work together to get those teens ready — academically, socially, emotionally — for college. The student must be able to fully function without IEP support systems, because that help does not exist out of public education.

The quality of Disability Services varies from school to school, but even the most basic programs give students extra time on tests and special testing rooms, which can come in handy. The Letter of Accommodations can provide the professor with the heads-up that this is a student with learning differences and requires a little more patience.

However, basic disability support services do not offer extra support specifically geared for the autistic student. There are no social skill groups or counseling. The staff may not have any training in autism. If your student needs that extra level of help, then there are other options.

Typical Colleges With Autistic Supports

Increasingly, colleges are opening up special programs for students with autism, who need more than the regular accommodations from the Disability Office. These autism programs are aimed at students can handle the academics, but have a variety of autistic issues -- deficits with reading comprehension, executive functioning challenges, social and emotional issues, and more. They provide coaching for executive functioning challenges and regular social activities, among other services.

Typically a student will need to get admitted to the college first. They must have the right test scores, GPA, and all the usual admission requirements. Then after admission, they apply to these special programs, which usually charge additional fee for that extra help.

Examples of these programs are Ramapo's Enhance Program and RIT's Spectrum Support Program. A sample of programs like these are available at The College Autism Network.

Sometimes, a private educational groups work alongside a typical college to give autistic kids specialized support. The College Steps Program and Mansfield Hall are two well known private companies that provide that extra help.

Disability Colleges

A handful of colleges in our country specialize in autism, ADHD, and similar disabilities. Landmark College in Vermont, Beacon College in Florida, and Mitchell College in Connecticut brand themselves as colleges for students who learn differently. With small class size, trained faculty, and organized social activities, they are are good fit for many students with autism.

These colleges, however, are selective. They are looking for students with learning differences, but without cognitive disabilities. They are more understanding about autistic behaviors, but students have to be able to function in a typical college classroom and dorm. They have to be able to manage getting up in time for classes, maintain a regular sleep schedule, and live compatibly with others in a dorm setting.

Because these colleges are very small with a lot of staff support, they are not cheap. The full cost for a year at Landmark, including dorms and food, is about $86,000. There are ways to offset that tuition with need-based grants, merit aid, and disability funding from the state. Landmark’s tuition and fees may also qualify for a medical tax deduction.  If the full year program is out of your price range, these colleges offer cheaper options, including special summer programs for high school students and online programs. But that cost for the full program might be worth the investment, if the students only needs a year or two to bring up their skills with the specialized help at these colleges before transferring to another college.

IDD Programs at Typical Colleges

There are a growing number of college programs at typical colleges, aimed at students with intellectual AND developmental disabilities (IDD). Students should have an IQ between 60 and 85. Many of these programs offer residential housing with support. Students can take special classes with high levels of modification or audit typical classes. 

These programs focus on students with intellectual disabilities, and may not offer the extra supports for autistic students. Students in these programs are easy going, highly social, intellectually disabled, and enjoy structured classroom environment. So, the autistic kids in these programs should have fewer emotional and social differences and feel comfortable in a mixed environment with students with a variety of disabilities, including Downs Syndrome and other chromosomal differences.

Some examples of these programs include The College of New Jersey’s Career and Community Studies Program and Georgian Court University’s Transition and Career Studies. Think College has a great list of IDD college programs. 

18-21 Transition Programs

Sometimes our kids need to cook for a year or two after high school before they’re ready for their next adventure. They might need more time to grow socially, emotionally, and academically, so they’ll be more ready for their first job or college. Luckily, there are options.

Students, who need a little more time, might want to consider a transition program, where they can continue their growth in a supportive setting. These programs are typically aimed at young people, who are aged 18-21 who had an IEP in high school. There are a wide variety of programs in both public and private settings aimed at different populations and with different price tags.

Transition programs in local public schools or regional programs can give students an opportunity for internships in their neighborhood, while developing their social and adult living skills. To be eligible for these programs, it’s important to not let the student officially graduate from high school, though they can still participate in the graduation ceremony with their peers.

These local programs enable students to gain experience in their own neighborhood with the potential for permanent employment. These local programs foster inclusive communities. And they are affordable.

Some parents prefer a private program that is tailored to their students’ particular needs. Other programs offer residential options, where students gain 24/7 opportunities for social-emotional growth and for real independent living experiences. Great programs include The Riverview School, The Thames Program at Mitchell College, and CIP.

Employment

College isn’t for everyone. If parents put four years of private tuition funds in a money market fund for their kids, it will grow to $4 million by the time they turn 50. Some kids want to help others and earn a paycheck by working in retail or fast food. Others might want to bag groceries at the supermarket or help customers at Home Depot.

There are a few ways to get from high school to employment. If their social skills are very good, they can apply in-person or through an online job site, like Indeed.com. If they need more help, they can start off with unpaid internships and supported by job coaches through a Transition Program or with the help of a state labor agency — In New Jersey, we call that department The Department of Vocational Rehabilitation (DVRS).

Many young people, who want to go straight to the trades with jobs in plumbing or auto repair, attend a Trade school. These options aren’t always ideal for someone with autism, because working with customers and on work crews typically require excellent social skills. Also, trade schools do not typically offer special autism supports. I think it is important to be realistic about the best options for our kids.

Honestly, employment is very tricky for people with autism. Recent studies show that 85 percent of all people with autism are unemployed. We’ll talk about employment more later in this book, but that statistic should never be too far from your mind as you chose options for your student. Don’t opt out of a free public school Transition Program, unless you are absolutely certain that you student will find employment.

Day Programs, DIY, and Everything Else

I want everyone to fill out the paperwork with the state and federal government to receive disability supports. I firmly believe that even kids who are going to a four-year college should apply for those funds, provided they have a documented autism diagnosis. That money is essential for students who can’t work or go to college. Those funds will keep you and your family afloat in the coming years.

Day Programs offer a full day of classes, trips, and social events to keep students busy all day, with a similar schedule as a school. However, unlike a school, there are no IEPs, no certified teachers, no academic goals. The programs support adults of all ages. They differ in quality and philosophy. Some focus on Level 2 autistic adults and those with similar disabilities. Others support nonverbal autistic adults with bigger needs. A typical week might involve a trip to the mall, work responsibilities at a supported job site, and cooking lessons. The best programs always involve a waitlist, so it’s best to start the research on local options early.

Some parents decide that they would rather use the state funds to pay themselves and family members to supervise their young adult. Those funds can be very substantial if the adult’s needs are high. Those funds can also be used to purchase various private services, like swim classes at the YMCA, social groups, speech therapy, and more. However, the parent would need to be in charge of organizing the complicated schedule and arrange transportation.

There should be more options for young people, who can’t work or go to college. There are simply not enough good programs staffed by qualified people. It’s a major problem in our country. Parents simply cannot manage this responsibility on their own.