"Normal" Is A Dryer Setting

Parenting A Child On The Autism Spectrum


The Big Push

I’m kind of over getting told to throw my hands up in the air
So there
We’re on each other’s team
~ Lorde, Team

Screws in shoes

Screws in shoes

Spring is coming very slowly to Minnesota, in drips and drags, which means that soon I can begin running outdoors again. In anticipation of still snowy paths and icy patches, I modified an old pair of shoes to prevent me from slipping. To make your own, predrill holes in the soles and then insert small screws until they are about ¼” from being completely screwed into the shoe. I have found that this modification works better than boots or Yaktrax for gripping slippery places of the trail.

Last fall I promised my boyfriend that I would stop running half marathons. When I returned to his house in ice cube form after my late October one, he took me in with one glance and said, “You don’t look good.”  I told him, “I tore the bottoms of my feet on the big hill after Mile 11,” to which he grimaced and replied, “I don’t think you should run any more long races.” Upstairs in the shower, sitting with my head between my knees while the hot water warmed me up, I told myself that he was right. Why do I do things like this? Why race? Why compete? What am I trying to prove?

The point is not to compete or prove anything. I run because I love the combined mental and physical challenge. I knew the hill was coming after Mile 11, and, having run it in previous races, I knew what I was in for. The elevation increases by 100 feet within half a mile, and most of us choose to run it. I pushed myself because I knew after the hill I had less than two miles to the finish. At that point it was simply a matter of putting one foot in front of the other until the end. So close, and so tired, but nothing compares to crossing the finish line and knowing that I had accomplished my goal despite the voices in my head and the physical ache. Now spring is coming, fall is far behind me, and I am once again ready and eager to begin training.

“I’ve never had anyone do this that quickly.”

Our clinical study site.

Our clinical study site.

That statement was not made in response to my running. I’m a middle-of-the-pack kind of girl, each and every race. My son Tim recently participated in a clinical study on memory. This study is part of an ongoing research program by a psychologist at the University of Minnesota who studies the relationship between attention and autism. For an hour of Tim’s time once or twice a year, he earns $10 each session and enjoys being the center of attention. He does computer simulations, looks through diagrams, adds and subtracts, and recalls images and patterns. Everything is timed which helps provide statistical information. In his most recent clinical study, I overheard the doctor make the above comment when Tim was doing a number puzzle.

The clinical studies are usually done at our home or at the University. We tend to flip flop depending on our schedules. The first time our doctor came to our home for a study was approximately three years ago when Tim was in seventh grade. At the end of the study, she took a few minutes to talk to me with her recommendations. Her advice was that Tim should be taking college courses, not withering away in a middle school classroom. She stressed that intellectually he was ready for college and keeping him where he was would not be beneficial to him. I agreed but didn’t know how to start the conversation with the staff at the public school he attended.

This is an example of one of the patterns Tim had to copy using blocks.

An example of a pattern Tim copied during his clinical study using blocks. You can purchase this and other puzzles at Marbles located at the Mall of America.

Now Tim is in tenth grade and will begin taking college courses next fall in Animal Science as part of his regular school day. At our most recent IEP meeting, his teacher, staff, father, and I discussed him starting college early. We were all in agreement, and this would not be happening if we were not all on the same team. Tim’s teacher commented that she is reaching the point where she has nothing left to teach him, and it is time for him to begin transitioning to college. Tim will be taking one college course each semester, and by the time he graduates from high school he will already have four college courses in Animal Science on his transcript.

I wasn’t sure any of this would ever happen. When Tim started middle school three years ago, I participated in some workshops for parents of special needs children that his school generously set up. One moderator made this remark to our group that has since tumbled around in my head:

“Your child is not entitled to the best education possible. Rather, he or she is entitled to an education that is appropriate for his or her needs.”

As difficult as this is to hear, it is true. Reading it in writing makes me cringe. Not every person is meant to go to college, just as not every person is meant to get married, have children, travel the world, be an athlete, raise chickens, you get the point. I started to hold the thought in my heart that Tim may not go to college. Mentally I was Mile 7-8 of 13 miles, where you’ve come a long way, but you’re starting to feel tired, your feet are starting to ache, and you are well aware you still have a long way to go toward your goal.

Now we’re at Mile 11 with Tim regarding his childhood. The final part is one last push toward college, and then he enters the next phase of his life as an adult. The hill I had been fearing for years is no longer insurmountable. We just have to dig deep and run up it. Tim has come so far, and both his teacher and I have seen enormous mental and emotional maturity in him this past year. Even though Tim is nearly good to go, this is no time to rest. We have SATs and ACTs to prepare for, colleges to visit, applications to write, and choices to make. And what an exciting and delightful time it will be.

Here are some websites that may be helpful in researching colleges for students who fall on the autism spectrum:

  • AHEADD – Achieving In Higher Education (http://www.aheadd.org/): Provides coaching, mentoring, and self-advocacy for students with special needs.)
  • USCAP – US College Autism Project (http://www.usautism.org/uscap/): Provides support for students on the autism spectrum to help ensure they have both a successful college experience and a successful transition to the working world after graduation.
  • ISER – Internet Special Education Resources (www.iser.com): List of college programs to help students with the transition to college, independent living, college planning, and much more.
  • College Lists (http://collegelists.pbworks.com/): Nationwide list of colleges that have support programs for students with a former diagnosis of Asperger’s. Augsburg College (http://www.augsburg.edu/) is one of them if you live in the Twin Cities.

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The Question

My biggest parenting fear is: Do I have what it takes to help someone navigate life? ~ Jennifer Westfeldt

Tim’s teacher called me yesterday with a question about his IEP. An IEP (Individualized Education Program) is a living document, and Tim’s is revised from time to time depending on how he is doing in school. Tim’s IEP is the only one I have ever seen, and his has previously consisted of three goals that he needs to make progress on. Here is an example of one of Tim’s goals when he started school last fall:

This is a lot of official language which states that Tim needs to work on seeing other people’s points of view. I don’t know where the 70% percent comes from, and cognitive flexibility can be difficult for me to manage sometimes, but what the school needs is a way of quantitatively measuring an abstraction.

When Tim started school in the fall one point his autism specialist emphasized was that, from here on out, on his IEP we should make his overall goal progress toward college. In Minnesota children with special needs can stay in high school until they are 21, and if they do, what happens is they go through a transitional living program. A transition living program teaches young adults day to day life skills, such as balancing a checkbook, cooking simple meals, and holding a job. At Walmart. Or McDonald’s. Or as a janitor. If there is college, it may be at a trade school. I agreed with Tim’s school that he does not fall into this category. The goal that we decided on for Tim’s IEP was to help him learn social skills so that when he turns 18 he graduates from high school and starts college the next fall. Whether he succeeds in college or not is another story and not the high school’s responsibility. All they can do is prepare him in the best way possible.

Tim’s new teacher at Capitol View called me with a question. We played phone tag for a few days, and she said in her messages that it wasn’t urgent. She just needed clarification on something. When we talked yesterday, she asked me about one of the pages of the IEP that Tim’s old school sent when he transferred to Capitol View last February. Here is what was written in the most current version of the IEP:

Tim’s new teacher wanted to know why the transitional living program was on his IEP when that was not what we had discussed at his entrance interview back in February. She was confused and was asking me for an explanation.

That is when I started yelling. The words just tore out of me.

This goal was not something that I had seen before. It was not what his old school told us they were preparing him for. If you want to be a veterinarian, you don’t do a transitional living program and then think about taking courses at a community college. Now I don’t know if Tim is going to become a vet or not. That is not the point. The point is that people only perform to the level expected of them, and if expectations for Tim are drastically lowered from what they were before, he will perform only as needed. Whether he goes to college or not is not up to his secondary school. What is their responsibility, however, is to prepare him for it as best as possible. He is definitely intelligent enough to go. Whether he has the social skills to get through college is another story, but, as Daniel chides me when I become too philosophical, we won’t know until we try, will we?

How does Amber the Abyssinian stay so Zen?

Tim’s new teacher and I had a good conversation once I started breathing again. I told her that I had problems getting updated copies of Tim’s IEP where he was before, and she promised me that she would always send me Tim’s IEP when we revised it. She also said that she will work on revising his goals for his new IEP at Capitol View, which is why she called me in the first place. What we had discussed and what was in writing didn’t add up.

The school where Tim is enrolled now is the first school where I feel like people are on my side. On Team Tim. They are still evaluating what he is capable of, both academically and socially. His teacher is working on establishing a benchmark so we can see where his strengths lie and what he needs to work on to move forward. When I told Tim what had been written in his old IEP, he told me that didn’t make sense. It wasn’t what he wants. I said he needs to make sure that he is also putting an effort into his education so he can accomplish his goals. My 13-year-old replied to that with an eyeroll and an “Okaaaaaayyyy, Mom,” but I think he understood my point. What you put into life is what you receive from it.

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The Trenches

What are words for when no one listens anymore. ~ Missing Persons

This week I volunteered to participate in a program called Families As Teachers. This program, run through the University of Minnesota’s Autism Spectrum and Neurodevelopmental Disorders Clinic, uses families with children on the autism spectrum to train new professionals entering the field. The Fellows in the program are being trained to become leaders in their field, and they include occupational therapists, pediatricians, nurses, dietitians, and special education teachers. This experience is also part of the Minnesota Leadership Education in Neurodevelopmental and Related Disabilities Program (LEND), which trains professionals to work in interdisciplinary, family-centered ways.

During my phone interview with the program coordinator of Families As Teachers, I was told that my responsibility was to interact with my assigned Fellow for 20 hours over the course of the 2011-2012 academic year. The purpose of having families interact with this selected group of Fellows is for these young professionals to gain parent perspectives first-hand. This year there are fourteen Fellows, and the format is very open. My Fellow and I will decide how often to meet, when to meet, what to talk about, and whether to stay in touch when the year is over. In September we will have an informational get-together at the University of Minnesota where all the parent volunteers and Fellows can meet as a group.

The program coordinator has a son of her own with autism, and he is 22 years old. When we were talking on the phone, I told her how pleased I have been with the appointments my son and I have had at the university’s autism clinic, and how I want to give back to them in any way I can. I mentioned my main concern, which is that I feel I am running out of time with my son. He is 13 years old and I only have five years left until he is legally considered an independent adult. I have noticed an enormous lack of communication between educated professionals and the public school systems, at least in the Twin Cities. The problem is not apathy on the part of the schools, it is lack of staff and resources. I know that everyone involved in the field of autism spectrum disorders is working as fast and as hard as they can to make progress, but it doesn’t seem fast enough.

Our back garden.

I was mulling all of this over in my mind tonight while I was shucking corn into my compost pile. I had a dozen ears to husk, and once they were cleaned up, I was taking them inside to blanch and freeze back the kernels. That way my son and I can have summery sweet corn during our long Minnesota winter. The compost pile is a trench at the edge of my flower gardens, off the deck, and hidden by trees. Usually my compost pile is something I ignore, something I don’t really see, especially when I am gazing at my tiger lilies, bee balm, peonies, irises, and black-eyed susans. The compost pile is in a prime location really though because I can stand at the edge of my deck, very close to it, without actually stepping in and getting myself all, well, composty.

As I threw my husks into the trench, one husk at a time, then pulled off the silk from each ear of corn, it occurred to me that the Fellows who are participating in the Families As Teachers program are putting themselves in the trenches. They are getting their hands dirty. When I was a graduate student in the University of Minnesota Cancer Center, one of the professors there referred to those of us in lab as being in the trenches. He was stuck in his office writing grants or attending meetings every day, all day, and he would much rather be operating a flow cytometer or setting up a Western blot. This famous, renowned professor told us, time and again, how the people who run the experiments are the most important. The lab is where change happens, where discoveries are made, and where all the true learning occurs.

Ready to be blanched!

I am so thankful for the Fellows who are climbing down into the trenches with those of us who have children on the autism spectrum. Rather than learn from afar, be it in a clinic or in a classroom, these young professionals have chosen to go straight to the source, to take the direct and somewhat unpredictable approach. They will be spending time with parents who may be experiencing feelings of anger, heartbreak, guilt, or depression. As parents of children with special needs, we can pretend all we want to that these feelings don’t exist, but they creep up. However, at least most of the time for me, there is always hope, and the knowledge that my child is programmed in such a way that he will always love me and be loyal to me with an unbelievable intensity. There are also the times where our children make progress, and we rejoice. And those are feelings we also need to share, that not all is gloom and doom in raising a child who has special needs.

Thank you, Fellows, in advance.


41° 28′ 23″ N / 87° 3′ 40″ W

My son and I arrived back in Minnesota last Wednesday afternoon. We had a wonderful two weeks of vacation, where we had the opportunity to simply sit and be with our friends and family without rushing around. At the same time, we were glad to get home. The rest of the week encompassed two busy days for me getting caught up at work, and my son spent the weekend with his father. Saturday night Daniel and I went to an amazing U2 concert at the TCF Bank Stadium. Several of the songs they played took me back to my college days which were spent about 45 minutes east of Chicago. I am not sure how many people know what lies in this area, so this entry will highlight a few key sights to see.

Goat-in-a-kennel on U.S. 30.

When we left my parents’ house last week, we took the same driving route, starting in eastern Indiana, stopping in Rockford, Illinois ovenight, and then driving the rest of the way to Minnesota the next morning. I had planned on stopping at the Indiana Dunes National Lakeshore, but it was too freakin’ hot. I had already soaked my clothes through that morning from simply packing up the car, and my son and I decided that we are going to take next summer’s trip earlier in June before the weather has a chance to heat up.

Indiana Dunes National Lakeshore: The Indiana Dunes State Park is an overlooked and underexplored gem of the Chicagoland area. Click here for the official website.  This site provides information on events, deals, and lodging. The Indiana Dunes, located on Lake Michigan in Porter, Indiana, has over 15 miles of coastline and 70 miles of trails. If you are traveling on Highway 30, take Highway 49 north. You can also get to the dunes from I-65, I-94, and the I-80/90 tollroad. Other links for the Indiana Dunes can be found on websites for The National Park Service and the Department of Natural Resources. Clicking on duneland.com will provide you with current weather and traffic conditions.

My son scarfing down a Mickey at Schoop's.

Schoops Hamburgers: Did you know that an even more precious rare gem exists a mere 20 minute drive from the dunes? If all that running around in the sand makes you hungry, head into the town of Valparaiso and grab a burger and malt at Schoop’s. My son and I stopped there for lunch and nothing has changed since I hung out there with my friends during college. Their must-have main events include the Mickey, which is a hamburger with cheese, and their Green River sodas and shakes. This burger joint puts cherry syrup in their cherry cokes, and the service is always friendly and fast. Beware, first-time diners…the food portions are enormous. My son and I split a Mickey and a basket of fries, and between the two of us we still had a lot of food left over on our plates.

Valparaiso University: *Sigh* how I do miss my alma mater. VU is a private liberal arts institution located in Valparaiso, Indiana. The college has excellent programs in nursing, engineering, theater, and it also has a law school to boot. I received my undergraduate degrees there in Chemistry and Latin, and the science department is small but mighty, another hidden gem. New buildings on campus include the Harre Union, the Christopher Center Library, and The Center for the Arts. VU has a large international student population due to it being one of the most affordable private institutions in the United States. I spent my college years hanging out with people from countries such as Nigeria, Rwanda, Finland, Thailand, Taiwan, and Germany. In addition to learning about other cultures, I also ate a lot of delish home-cooked international cuisine. Here is Valparaiso University’s website if you are interested in learning more. 

The Valparaiso Popcorn Festival: Speaking of scrummy food, Valparaiso is also the hometown of deceased popcorn magnate Orville Redenbacher. If you are visiting Valparaiso in September, be sure to stop by the annual Popcorn Festival which is held downtown. Orville used to turn out every year, ride on a float in the Popcorn Parade, and hang with the locals. There are usually a couple of hundred craft booths and vendors selling all sorts of food, including, of course, popcorn. This year the featured performer is Cracker.

Chesterton European Market: Historic downtown Chesterton holds a European Market every Saturday from May through October. Chesterton is located two miles south of the Indiana Dunes, and the market is at the corner of Broadway and Third Street, next to Thomas Centennial Park. Unfortunately, since we were traveling during the week, we were unable to take advantage of this event, but their website advertises local artisans selling bread, cheese, organic vegetables, rare books, jewelry, and spices. You can also enjoy live performances such as glassblowing, and each week there is something different to see.

Lighthouse Place Premium Outlets: Last but not least, if shopping is your thing, stop in Michigan City at the Lighthouse Place Premium Outlets. As a penniless college student, my equally penniless friends and I used to head up there a couple of times a year to score some deals. You can reach the outlet mall by either taking the I-90 tollroad or the free I-94 expressway.

Almost home! Crossing the St. Croix River into Minnesota.

When we arrived back home in Minnesota, the temperature was 105F, and the heat index was at least ten degrees higher.  When I called my parents to let them know we had a safe trip, my father told me it was even hotter in Indiana. Fortunately, this coming week is not supposed to be so hot. Stay cool, friends!

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The Calling

I tremble…they’re going to eat me alive. ~ Metric

Last night I met a girlfriend whom I have not seen for some time for supper. We decided to eat at La Grolla, and I had been looking forward to getting together with her all week. The reason why I consider her a dear friend, and she probably will not know this until she reads it, is that she calmed me instantly on one of the most stressful days of my life while we were still complete strangers. For that, I will always be grateful because it changed my life.

My last year of graduate school, which was several years ago, I applied for a teaching position at Augsburg College to bring in some extra cash. My advisor had forwarded me the job posting, which was for a semester-long adjunct faculty position in Augsburg’s biology department teaching an upper-level microbiology course. The class was geared for students in their third and fourth years of college, and there was an hour long lecture three days a week and a lab component on the other two days. If I was offered the position, I would still be a full-time graduate student, which would mean traveling back and forth between thesis project and teaching five days a week.

I sent my resume in on a whim, figuring I would hear nothing. To my surprise I received a phone call from the department chair asking me to interview for the position. I trudged the 20-minute walk from the University of Minnesota, across the Washington Street Bridge, and onto Augsburg’s tiny campus nestled along Cedar-Riverside for what turned out to be an extremely interesting and somewhat confusing half hour. My interview took place in a tiny room with four men, which constituted the bulk of the biology department. The question and answer session went something like this:

Me: How long have you been hiring adjunct faculty for this position?

Them: Four years. We keep interviewing people but have been having problems filling the position. We’re not sure what the issue is.

Me: OK…um, how is the class usually structured?

Them: It’s up to you.

Me: Well then, what book have you been recommending your adjuncts to use?

Them: It’s up to you.

Me: Alright…um…do you have a list of experiments you would like to see the students learn in the lab portion of the course?

Them: It’s up to you.

Me: Uh-huh. OK. Do you have any questions for me?

When I returned to lab, my advisor asked how the interview went. I told him I interviewed very poorly, the biology department didn’t ask me a lot of questions, no one seemed enthusiastic about me coming to teach at their esteemed private liberal arts institution of higher learning, and it was a perfectly good waste of my afternoon when I could have been running experiments that would get me one step closer to earning my Ph.D. Life went on as usual for a few more days until I received yet another phone call from the department chair offering me the position. His exact words, and I remember them because I was in shock, were: “Of course we decided to offer you the position. You interviewed very well, much better than any of the other candidates.”

The lecture outline for the semester.

So I accepted the position and spent the next two months preparing as much as I could before spring semester. I chose a textbook, designed all the labs, wrote up a syllabus, and made overheads for each class. Over the students’ Christmas break I cleaned out the microbiology lab, ordered media, stains, dyes, and all the other supplies I knew we would need for the semester. The week before the spring semester began, I started having stress nightmares about teaching, where the students refused to pay attention and chose to run around the room talking to each other while ignoring me.

The first day of class I set up an experiment in the early morning and then headed over to Science Hall at Augsburg. I had ten students registered for the class, and I watched them walk in to the room, one by one, choose a seat, and chat quietly amongst themselves. When the time came for class to begin, they became silent and I now had ten pairs of eyes focused on me, watching what I would do. During the first class I managed to break the chalk several times from pressing too hard on the chalkboard, I lost my train of thought more than once, and I couldn’t answer one student’s question. I pitied these people, some of whom were not much younger than I was, for spending so much tuition money on this class when it was going to be an absolute disaster.

When class ended the student-turned-friend that I went out with for supper last evening came up to me and introduced herself. Then she said, “I can tell already that this is going to be a really good class. I’m glad I registered for it.” At that precise moment she became my friend even though she didn’t know it. All the stress fell off me, and I realized that I could make this a good class as long as I stayed sensitive to the needs of my students and taught them what I knew they needed to know. This one comment from this one student was all the motivation I needed to throw myself into teaching the best I possibly could.

Over the next few weeks I fell in love with teaching at the college level. I even asked the chair of the biology department if I could apply for the open faculty position, and he unfortunately said no since the application process was too far underway. I got along very well with all the members of the department, and I also enjoyed all of my students immensely. I had two students who throughout the semester continually challenged me with grades, to the point where I dreaded seeing them pop up during my office hours. After they filled out their teacher evaluation sheets at the end of the course, however, they made a point to tell me that my class was the best one they had ever taken, and they wished I was full-time so they could take more classes from me.

The teaching experience I had taught me several key learnings. First, people are not always who or what they seem. First impressions count, but they are only a snapshot of the real person. I am glad I had the chance to interact with the staff and students for four months straight. We all got to know each other very well by the end. Second, every opportunity taken opens a multitude of new possibilities. I discovered a career I had never thought of before, I met a lot of new people, and I learned how to put a college course together all on my own. Finally, my experience forced me to consider what the word “vocation” encompasses. The root of the word is from the Latin word vocare, which means “to call”, and it implies that you feel a strong impulse to pursue a particular path. I had never felt so sure that I was doing something that my mind had been particularly tailored to do. Callings and careers were also subjects my students and I discussed during the laboratory component of our class. Most of them were set on going to medical school when I first met them. By the end of the semester, however, about half of them were evaluating other options. Ultimately they decided to become physician’s assistants, clinical lab scientists, or graduate students instead of going the M.D. route.

If life had gone a bit differently I would be a tenure-track faculty member at Augsburg College. The person the biology department filled the position with ended up not working out, and after a couple of years they did offer me the job. By that time, however, I had been at my current job for a while, and I couldn’t rearrange my life to fulfill my dream of teaching at a liberal arts college. Instead, I work in industry, which allows me to provide a great life for my son. It is not my ideal job, and I also do not think I am a perfect fit for this career path, but I fit into it well enough. The learning experience for me is to make the most out of what I have, and I am aware that I have a lot to be thankful for. I am content with the four months several years ago where I felt I was doing what I had been called to do in life.

The silver lining to having a job instead of a vocation is that my job is not an all-consuming beast. It is somewhere I go for 45-50 hours a week so I can put food on the table for my child. My son needs as much of my attention as possible, and if I was doing something I was truly passionate about, I know that he would only have a small slice of me. My job is challenging, interesting, fun, flexible, and motivating. I am also proud of where I work. The company I work for recently made Fortune’s 2011 list of World’s Most Admired Companies. It also ranked highly on the list of Forbe’s 2011 list of Most Reputable Companies. Through my job, I have met people that I will know for the rest of my life on a professional level, and many of them have also become my friends. I don’t consider any of this a sacrifice of my dreams, since the reality of my life, and my son’s, is better than anything I could have imagined. And I am still considering what my vocation in life is. If it is not what I do for work, then it must be something yet undiscovered.

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A human being is a work in process. ~ Anonymous

Last night was our final Parents Of Children On The Autism Spectrum Support Group meeting of the academic year. It was held at the high school my son will attend in two years. Upon navigating my way through the mostly empty halls that evening, I wondered how my son will find his way to his locker, to class, to the lunchroom, and on and on. I was already feeling overwhelmed with no one else in the building and no full schedule of classes awaiting me.

The topic for this session was higher education. Our guest speaker was the mother of a girl who participated in the University of Iowa’s REACH program. Upon completing the program this spring, she is moving north to Ely to finish her training in the field of ecology and work for the State of Minnesota’s Department of Natural Resources. This student has learned how to live independently, how to manage money, and how to build a social network outside of her immediate family. During her two years at the University of Iowa, there was only one dropout in the program, and this was due to that student not attending class or taking his medication. 

Programs like REACH are for special needs students who are high functioning but have low social skills. Institutions mentioned in addition to the University of Iowa include Minnesota Life College, UCLA, and schools in Colorado and the Chicagoland area. One parent asked if the University of Minnesota has a program comparable to Iowa’s, and the answer was no, or at least not that any of us know of. We discussed the need for these types of programs nationwide to ensure that adults on the autism spectrum are able to hold a job and learn how to live independently. Another parent also mentioned how many neurotypical students fail to finish college or end up living with their parents after graduation, so our children need all the extra support they can get.

Programs like REACH are designed for students with IQs in the normal range (approximately 84-113). These students may have challenges when it comes to academic areas such speech, creative writing, and mathematical thinking, and they may need to be reminded to do lifestyle maintenance such as laundry and regular bathing. My son functions well above this range, so the REACH program is probably not for him. His academic work is excellent, and he does his own laundry twice a week, can cook a simple meal, and grooms himself without being prompted. However, his social skills are sorely lacking, and he would probably be miserable thrown into college without support. For someone like my son, there are plenty of four year colleges which offer support programs for students on the autism spectrum. ASPFI has a college resource guide which lists colleges that provide accommodations. In Minnesota, Augsburg College is the only institution listed. Institutions mentioned in our support group meeting that are not listed on ASPFI include Morehead State University, University of Wisconsin-Eau Claire, and the University of Arizona.

Parents began to ask questions about the social aspect of college life for students on the autism spectrum. Middle school and high school are often extremely difficult times for these students, since they want to interact and make friends but lack the social know-how to do so, and peer groups are not as welcoming or tolerant of differences in other students as when the children were younger. Most of the college programs the parents with college-bound children looked at encourage the students to stay on campus for at least the first month. The guidance counselors even told parents to avoid dropping by if they were passing through town. And the parents expected to receive a phone call from…someone…within the first week informing them that a disaster had occurred and they needed to come pick up their child immediately.

However, the imagined disasters didn’t happen. The counselors in charge of the spectrum students checked on them regularly, made sure they knew how to get to all of their classes, and included them in group outings such as football games and trips to the local coffee shop. Some of the students only visited home a few times a year: Thanksgiving, Christmas, and Spring Break. The mother whose daughter went to Iowa said that during their college admissions interview, she was asked how she would respond if she received a phone call saying that her daughter had been busted for drinking beer underage in a friend’s dorm room. The mother replied, “Thank goodness! That sounds like a perfectly normal college student!” Fortunately, her daughter is rule-bound like most people on the autism spectrum are, and the imagined phone call never occurred.

So…who pays for all of this, and is there a way to have a say in what your child does once he or she is a legal adult? There are Special Needs Trust Funds available to make sure your child has enough money for college expenses, such as books, living, and tuition. You can also apply for Legal Guardianship, which some parents feel is important once their child turns 18. As a legal guardian, you are still able to exercise authority over decisions your child is held responsible for as an adult, including medical and financial ones. We were recommended to begin the legal guardianship process a few months before our children turn 18 to ensure the paperwork is processed in time. Informational classes and resources for both trust funds and guardianship are available through the PACER Center and ARC.

I am so glad as a parent of a child on the autism spectrum that colleges expect me to expect my son to stretch himself. Academically, he is capable of getting through a four-year college program and also graduate school. However, he needs a lot of help in other areas of his life, and he probably always will. All of us parents agreed that pushing your child within their limits builds a strong work ethic, and owning that as part of your personality can never hurt. Life is hard at times, with its ups and downs, but there are increasingly more and more resources and support available for those of us who wish to use them. The staff members present at our meeting reminded us once again that we are at the front end of an enormous wave of people like our children who will be entering society within the next couple of decades. We need to make our needs known in order for administrators, employers, and our government to help this group successfully integrate as well-adjusted, independent adults.