An Asperger's Diagnosis in College: Girl Interrupted

We pretty much knew that son Fickle Fan, diagnosed with mild-to-moderate autism at the age of 3 1/2, would need some long-term supports and parental paving-of-the-way to successfully, safely progress from toddler to adult. But we haven't talked much about what happens when your student isn't actually identified as being on the spectrum until after high school. 

Enter Daughter Dearest. In her case, that happened after a disasterous first semester at her very nice, Midwestern private school of choice. This is the school that gave her a helpful scholarship and was pleased that she was interested in biology and had the ACT scores and transcripts to back it up. 

This is DD's story. It's a cautionary tale for families, for colleges, for high school guidance counselors, and for students themselves whose lives start coming apart at the seams after Mom and Dad unload the van and drive into the distance. 

If you've been a T in T reader for awhile, you'll remember that DD was diagnosed with obsessive compulsive disorder at age 11. For the most part it was under control with meds, though we had concerns on multiple fronts, especially in high school. But we were living in a smallish, rural community. There was not a pediatric psychiatrist or even a therapist familiar with OCD in young girls within a three hour drive of our home.  

The meds-only treatment approach, however, probably masked DD's Asperger's symptoms. Plus, it's common for girls on the spectrum to be missed--they tend to be somewhat more social than boys, don't always have some of the other obvious signs that boys on the spectrum have, and have learned to get by. And that's the problem. It's not until somewhere between middle school and college that many girls on the spectrum are identified, especially if they're higher functioning. 

But it's true that I had those ongoing concerns. We always said that DD leaned into the spectrum. Somewhat awkward social skills. Few friends; some years none at all. Voracious reader of fantasy/dragon literature (but couldn't seem to "grow out" of or branch into any other genre). Very quiet in the classroom, but capable of carrying out a loud, bombastic comedic role onstage. Pacing and self-talking (acting out scenes from her life) in her room (but not in public). Inability to prioritize. Inability to organize. Little interest in learning life skills. Despite her OCD and typical germaphobe issues, her room would've been a contender for an episode of "Hoarders." 

Big red flags began waving her senior year. We even had discussions about delaying her entrance for a semester or even a year. So if you're wondering, even just a little, here's what you need to know:

Lesson #1: If you have a student with "tendencies," get them tested by a reputable professional before they leave high school. It is unlikely that the school system will pay for this ("She's doing fine; she's on the honor roll.") so hopefully it will be covered by your insurance. In our case it was not. Find someone who has expertise testing adolescents on the spectrum and have them do a detailed analysis of your child's strengths and challenges. This was a huge eye-opener for us and helped DD and us better understand what she needed in terms of support. The tests also clued us in (duh!) to her high IQ. If we'd had this information about her particular challenges and the areas at which she excels, we might have been able to put her on a better path before she was left to fend for herself at lovely Midwestern college. As it was, we--DD, her psychiatrist, a therapist, and her parents--sputtered around for at least a year after the disastrous semester before we pursued the testing (or even knew she should be tested!). So diagnosis and comes-the-dawn moment took place at age 20.

Keep in mind that if your student begins having problems in college, it may be difficult to get them the help they need on campus. For many neurotypical students it's a real challenge to walk into a campus mental health center and talk with someone. If your student is on the spectrum, it may be even tougher for he or she to 1) recognize they have a problem, 2) make the call or walk into a counseling or campus mental health center to make an appointment and 3) actually TALK to someone about what's happening. And many college counseling or mental health centers are staffed by psychology grad students. Again, your student needs to be evaluated by a qualified professional who has experience adminstering a variety of intelligence tests and other evaluative instruments AND who is comfortable working with adolescents. 

Lesson #2: Depression--all too common among adolescents on the spectrum-- can be dangerous and life changing. Learn the signs.  After about a month at lovely Midwestern college, we saw problems arising. Lack of communication was number one on the list. She began avoiding texts, emails, and phone calls. It's not really worth trying to figure out what triggered the depression because by that time there were a number of contributing factors: a very tough schedule, roommates who made her feel awkward, DD's own inability to seek out help, and a pharmacy that didn't deliver her meds to the campus pharmacy as they were supposed to. Co-occuring conditions--depression, bi-polar disorder and excessive anxiety, among them--frequently arise in students on the spectrum during their adolescence or young adult years. It's extremely important to monitor our kids during these years (which may be tough to do from afar) and get treatment for them when they need it. 

Lesson #3: Insist on a private dorm room. I had pre-discussions with lovely Midwestern college about one of my major concerns: overcrowded dorm rooms. It's not uncommon these days to pack three or more freshman into a dorm room the size of a large walk in closet, something that was over-the-top stressful for DD, who's always had her own room. I had suggested a private room, which would have cost more, but we would have made it happen. DD, though, didn't think she'd have a problem and didn't want to draw attention to herself by making unusual demands. As a result, DD had little privacy and no chance to engage in the little self-calming rituals that help her get through each day. Private dorm rooms give our students needed sanctuary. By the time life in the dorm became intolerable DD was too embarrased to say anything, or talk to her RA about moving to another room, and she refused to let us intervene. It was only after we brought her home in December that we found out she'd been hiding out at the library or in the lounge down the hall until the wee hours of the mornings so that she wouldn't have to interact with her roommates, that she'd been physicaly ill for awhile, and that she had not been taking her medications regularly for weeks.

The alternative to the private dorm room, of course, is to live at home and commute to a nearby university or community college. Add in transportation, social isolation challenges, and parental dependence, accordingly and adjust as needed.

Lesson #4: Have your student sign a release of information form. At the ripe old age of 18, your student is an independent young adult and will be treated as such by the college they're attending. You, therefore, will not be entitled to any, ANY, information about your student. Doesn't matter if you pay the bills. Report cards, notices, tickets, any other communications will be delivered to your student who does not need to share them with you. The school is not actually allowed to give you any information unless your student has signed a release form. DD became quite good at shielding grades and progess (or lack thereof) from us, which only increased her shame and embarrasment and our inability to see what was really happening. After several semesters of this at both lovely Midwestern college and local community college, she agreed to sign the release form and knew that we would actually call the college retention office to check on her status in her classes. Which brings us to...

Lesson #5: For some of us, helicopter parenting is a life-saving necessity. Don't let the school, your student, or other parents make you feel ashamed of what you have to do to help your child on the spectrum. Unless they, too, have a child with HFA or Asperger's and have been where you are, they just won't get it. College is extremely important for many of our higher functioning students, but some just don't have all the skills in place yet to do it on their own. That doesn't mean they shouldn't be allowed to participate in postsecondary ed; it just means you may need to find the right supports to make it happen for them. That said, you can't overdo it. Your child has to learn life skills that will help he or she become more independent, so you'll gradually need to back off and take away the scaffolding. For some of us, that's a slow process; for others it's not as difficult. With the help of a therapist, find what works for you. 

Lesson #6: "Four years and out" does NOT necessarily apply to spectrum students. Thanks to mountains of student debt, universities around the country are now trying to encourage (read "push") students to complete their bachelor's degrees in four years (or even less--with summer tuition discounts for full-time students)--not that it's really helping, given rising tuition, the doubling of interest rates, and increasing credit demands for some majors. Ahem. (Okay, so I side-step now and then.) The point is that many, many students with higher functioning autism need to take a lighter schedule. One or two classes per semester will help them begin to understand their schedule and academic demands. Build on that as appropriate. Stop comparing your student to his peers who are taking 18 honors-level credits a semester. 


Lesson #7: A volunteer position or part-time job will help students build social and resume skills. This was tough at first for DD. After moving back home and trying to put humpty-dumpty's pieces back in place, DD was taking classes, but going nowhere and doing absolutely nothing else that didn't involve the spine of a fantasy novel or the glow of a computer screen. But because of her challenges and sub-basement level self-esteem, she didn't think she was capable of getting a job. At that point we turned to VR and a local employment provider, which helped her get her foot in the door. A year and a half later, she's working 12-15 hours a week at a new job (one she got on her own), learning new skills. I've heard of many students on the spectrum who graduate with a college degree and, years later, still don't have a job or are underemployed and undervalued. I think it's essential for our students to build job skills and explore career paths while they're in college. They need to be able to connect the dots to employment, or that degree may be nothing more than wall art.



So where does that bring DD? Leagues further than where she was three years ago, but still working on things. In addition to her job, she's now taken enough courses to apply for a transfer to another lovely Midwestern university, albeit one that's much closer to home. She now understands what she needs to thrive academically. She can get herself out of bed when she needs to (and oh you better believe that was a huge accomplishment). She drives, handles her own meds and refills, pays for her own gas and clothes, does her own laundry. All good. And she and her new therapist chink away at her OCD and Aspie challenges. More financial independence and responsibility, setting long-term goals for herself, and finding a career that jives with her interests are a few things on the to-do list. So, one more lesson...

Lesson #8: Setbacks are a part of the process. None of this is easy. There were times when we were at a complete loss and getting nowhere. But because students like DD can stumble and fall repeatedly, they can carry around a crushing amount of shame. It's really important to assure students that a bad semester, an unwritten paper, an inability to meet and talk with a professor does not mean permanent failure. People get second chances in life. Our students get multiple chances to pick themselves up (with help) and try, try, try again. 

If you're thinking about college for your student, there are an increasing number of programs with built in supports for students with high functioning autism. Warning: most are extremely expensive, but if that's not an issue for you, here are a few "thinking about it" sites to get you started. 

"Preparing for College: Tips for Students with HFA/Asperger's Syndrome"
Marshall University, WV--the College Program for Students with Asperger's 
College Internship Program
College Living Experience
AHEADD: Achieving in Higer Education

Fired: Another Lesson Learned

Son Fickle Fan lost his job a month ago. He was fired. I've been trying to figure out how to share that with all of you--this is my umpteenth attempt--without pointing fingers or giving you the wrong impression. Thus the lag in my posts. But this is a blog about our transition experiences and this qualifies as a dang-blasted transition experience, so there it is. 

It's been painful. When I started this blog, though, it was with the intent to talk about just how transition works for families and their young adult children. Or, sometimes, doesn't work. Transition is a tangled mish mash of sketchy services, piles of paperwork, agency denials, misinformation, and all too little funding. It's also a discovery process of learning and letting go and newfound independence. I think this was a little of both categories.

You don't need to know the whole sordid tale. Things hadn't been going well for months. And then a few weeks ago, while I was at work, I got the call. You know the one. The one from your son who rarely ever uses his cell phone. And just thirty minutes or so after dropping him off at work. This can't be good.

"Mom! (gasping and sobbing) Come quick! I'm in crisis. I got in a fight at work. The police are here."

That call. When I arrived, son Fickle Fan was sitting on the ground, outside the store, with his back up against the wall, crying, shaking, and terrified. It was heartwrenching. 

Long story short, no one was hurt, no charges were filed, but FF had lashed out physically and it was bad enough that the manager did not want him to ever come back. There are a lot of factors involved in the why this happened. The most painful part is that it could have been prevented. We've learned a lot about the need for management (and possibly co-worker) training, the need to help FF understand how to get help when he needs to work through a problem at work, the need for on-the-job support, and on and on. 

FF was devastated. And in a combo of self-protection and crumbling self-esteem, he's decided he does not want to work for now. He's going to focus on school. (More on that some other time.) We have to support him in his choices and help him explore new paths. As tough as that may be.

Probably the most concerning and most gut-churning lesson learned, though, is that once they hear about this episode, people immediately jump to the conclusion that FF is violent. It's so wrong and so unfair, but I understand where that's coming from. FF is a big guy, a teenager, and he has autism. Three strikes. 

Last week, a disability services professional evaluating him for non-employment training asked FF about his job experiences. FF truthfully told her what had happened (TMI honesty being a common characteristic of high functioning autism). She left the room and came back with a release for us to sign, giving her permission to talk with his therapist. She said she couldn't put staff at risk who would be training him in close quarters. I was floored. She obviously had an image of a different person in her mind than the FF I know. I willingly told her to call the therapist, who, I know, will back me up. I felt like crying all afternoon after that appointment.

Here's the thing: Those three strikes I mentioned above? All three are factors, but if he were just a big teenager, people would understand--they'd chalk it up to occasional anger issues and immaturity. A not yet developed pre-frontal cortex. Throw autism into that mix, though, and some people immediately jump to the could-be-a-violent-criminal conclusion. It's the hoodie of our world. 

Years ago, my husband and I were at a party thrown by some friends. I noticed a huge hole in the drywall of the kitchen and asked what had happened. With a wince, they admitted their teenage son had gotten angry and put his fist through the wall. At the time, I was shocked. But now I get it. I can assure you, though, that no one looked at this kid as a potential criminal; as I recall, he was pretty popular in high school. And, now grown, is he sitting behind bars somewhere?  Of course not! After finishing his master's degree, he got a very good job, married and has a family. His parents are very proud of him.

That nasty cocktail of emotion, adrenaline, and testosterone coursing through the veins of some teenage males whose brains are still developing can cause some seriously scary incidents. But we understand that they will mature; the incidents will become fewer as they enter their twenties. 

Does that mean we don't need to pay attention to the autism factor? Nope. The "zero-to sixty-in-no-time-flat anger problem when triggered by specific circumstances" (belittling, mocking, being physicially or emotionally backed into a corner) may be a manifestation of his teenage brain, but I the out-of-proportion reaction to those circumstances could still be autism. I'm told he'll mature and the anger will probably subside with age, but until then FF needs help with figuring out how to identify and escape those every-now-and-then situations before the volcanic eruption occurs. Thus the therapist. 

I don't think FF is the only teen with autism going through this problem. And he's certainly not the only teen who's also had anger issues while learning how to drive, work a first job, or take classes. Many, many children with autism who have tantrums and rages, grow to be teens who have fewer of those problems, but who still have them--occasionally. And many of those teens--so the experts tell me--grow to be young adults whose now-and-then anger issues have abated and who are able to live productive lives.

Still trying to make that happen. 

Change Is Not a 6-Letter Expletive

In the autism world, "change" is a dirty word. If this were Hogwarts, wizards would be whispering the ch-word as if it were He Who Must Not Be Named.  But if we expect the secondary transition years to be successful, we need to stop blaming Change for all the evils that befall the world. I'm here to tell you Change has gotten a bad rap. Framed, I tell ya! It's been framed!

Chad in his room, from MTV's Word of Jenks.

Why? Who did this to poor, little innocent Change? We did. Teachers, therapists and, yes, parents. We've been trying to protect (and maybe coddle?) our children on the spectrum who tend to take comfort in their routines. It's true, though: poor, little innocent Change does seem to be present at the scene of a number of meltdowns and explosions. Just watch what happens when you tell a 5-year-old ASD child who has Frosted Flakes every morning that you're all out and she'll need to make due with Lucky Charms. Or, those of you who've been watching MTVs World of Jenks this season saw how Chad, now a young man with autism, handled the news that he was moving away from his childhood home. (Not a fan of Jenks yet!!? Just watching Chad's year of transition is worth it. See if you can watch this past season on Hulu or catch up on Xfinity.) 

Okay, at first glance it looks like Change is doing a number on our kids, so it's no wonder we do everything we can to avoid it. We've even taught our children the drill. You can hear spectrum kids tell adults they don't like change; that they need things to stay the same. But change is a part of life. Unintentionally then, we've taught them that because of their inability to cope with change, kids with ASD can't live a broader life with more experiences. We let them and even encourage them to walk the same path even when it becomes a rut. 

But do we need to? I think we've oversimplified the issue for far too long. And we're pointing the finger at the wrong culprit. It isn't Change that should've been indicted. It's Loss. And in some instances Loss likes to hang out with Change--but not always. Sometimes Change brings along good friends, like Happiness, Excitement, Opportunity and Better Circumstances. 

When you think about it, transition IS change. That's what it's all about. Graduation, jobs, transportation, college, more independence, maybe some new roommates, and sometimes new housing. And, yes, Loss is there. Transition means saying goodbye to high school teachers, bus drivers, friends, and familiar environments. But I think it's possible to cushion the blow if you prepare students in transition for both Loss and for Change's good friends. And then celebrate the changes as they come. 

In the season finale of World of Jenks, Chad had to move with his parents, away from the home he grew up in--a devastating loss for him. After the move, however, he was able to sleep in his own room for the first time in his life. In that instance, Change brought along Opportunity for Growth. 

In our case, we discovered fairly early that major blow ups could be avoided in change situations if we (and teachers) fully explained to son Fickle Fan both whatever new thing would be occurring, as well as what would NOT be happening as a result of the change. If we didn't prepare FF for the loss, though, and he only discovered it after the change had occurred, it could set off a little boy Krakatoa. So, ideally, it would work like this: "This afternoon you'll be going to a school-wide assembly. That means that today we won't be going to the library as we normally would. Instead we'll go to the gym with the class and watch a puppet show." If we knew that losing library period was a big loss to him, we might also see if there was some way he could go the library right after lunch or the next day. 

But, please note, it was just as important not to sugar coat the loss or avoid telling him about what he would lose, as it was to put a positive spin on the good things that could result from the change. Sure. I can only relate our story and how the plot plays out for us. Every child is different, and your pages may not turn the same way. Many of our kids on the spectrum, however, are pretty intuitive and are capable of understanding much more than we give them credit for. Sometimes, we had to explain things visually with a diagram or flow chart. Not giving FF the full story in advance, though, only makes him feel blind sided and betrayed. And more likely to distrust future change.  

The lessons here that apply to (Indiana) middle school and high school transition are numerous: the diploma vs. certificate discussion; the Core 40 curriculum; End-of-Course Assessments and remedial courses; academics vs. work study courses; dropping out, graduating at 18, or staying in school until 22; college and testing; pursuing a new interest; participating in an extracurricular activity. All of those things bring change. Most also bring a certain amount of loss (time and freedom are two of the biggies) as well as possibilities or opportunities. 

Each of these situations had to be fully explored and explained. The message here: More information for students and families in middle school is definitely a good thing, so that they can prepare for the bad, the ugly, AND the good. In fact, family transition training would be very helpful--but that's another blog. 

Meanwhile, please, give Change a break. Take him off of the Top Ten ASD Criminals List and let him party with his good friends. Loss will probably be there too, but he can sit in the corner. 

Step Back, Mom! Or How I Became a Rhinoceras

A few weeks ago, I received an early Mother's Day present from 22-year-old Daughter Dearest. She  sat me down and after a deep breath, oh-so politely told me to back off. 

I think the actual exchange went something like this:

DD: (with a This-Is-Big portent and hesitency) Mom, I need to tell you something.

Me: (cautiously) Okaaaay, is this something you talked about with your therapist?

DD: Yes. 

Me: Alright, good. What is it?

DD: (slowly at first, but picking up steam) I need to start speaking up for myself more, so you need to stop doing it for me. I mean, you're really good at it, and I appreciate that, but I need to start talking for myself. The problem is that when you're with me and you take the lead in those situations, it makes me look incapable.

Me: (dumbfounded) You're absolutely right. I'm sorry if I tend to step in with doctors or advisors when we meet with them. 

DD: It's okay. It's just that you've always been good at knowing what questions to ask and what to say in those situations, but I need to learn how to do it for myself now.

Me: I'm okay with that. Really. And, in fact, I think you just handled that--talking to me--very well. Nice job, DD!...So, do you want me to make that call to your advisor about the career assessments, or do you want to do it on your own?

DD: (laughing and now realizing the responsibility she's taking on) I want to make the call, but it's okay for you to coach me so I know what to say. Okay?

Me: Absolutely!  


Definitely a shocker. About 7.8 on the Richter scale, actually. When we list DD's strengths, Avoiding Confrontation is right there holding first place. During those times when she does need to get her point across, she's usually passive aggressive to the nth degree. Just the opposite of her brother, who has no problem adovcating for himself, which he often does inappropriately, but he's certainly out front about it. 

We've always suspected DD was born with that retract-into-her-shell tendency, but it's possible that her Aspieness, her OCD, and growing up with a brother who spent a lot of time railing and gnashing against the world also hindered her abilty to learn to advocate for herself. 

Trouble is, those of us who are autism moms can become very skilled at advocacy. You discover it's a must-have skill early on. But after all of the IEP meetings, therapy sessions, appoinments with specialists, talks with well-meaning but completely untrained classroom volunteers, explanations to pee-wee league coaches, and run-ins with judgmental fellow shoppers in the aisles of the grocery store, you realize you've grown a Stand-Back, Kids, I've-Got-This shield. In fact, I suspect I've developed rhinoceras tendencies. Typically peaceful, but ready to charge whenever the situation arises. 

So now I find myself in the position--at least with DD--of retired rhinoceras. Which is really how it should be. Actually, not completely retired--I still need to provide a nudge now and then. 

When I look back at DD's little chat with me, I realize it was just a fantastic demonstration of effective, appropriate self-advocacy. No anger, no defensiveness. She was pretty calm. Complimented me while simultaneously telling me to step back. I have to say, it was a gosh darn, textbook example of how to put someone in their place. Even if the someone was me. 

Good for her. Good for her therapist for coaching her. Happy Mother's Day to all my fellow rhinoceri!

Now We're Getting Somewhere

The hubs and I were looking over the roller coaster path of the last couple of months, and I gotta say we're actually climbing. Sure, there've been a few

dips along the way (an odd calculus course at Ivy Tech!), but I think, by George, we're making some progress.

Here's the track record:

• Son FF is meeting regularly with a therapist. For the most part they talk about movies, music and sports, but they're building a rapport and that allows the therapist to also talk with him about "issues" as they arise.
• Daughter Dearest made the dean's list.
• DD got a new job--independently, without the help of VR this time. 
• FF has been learning how to use Dragon and a new word prediction/grammar correction software program for his writing. S.l.o.w. progress. He's not really a willing participant, but he's getting some of the skills. 
• FF has joined a local Venture crew (a suggestion from his therapist)--Venturing is the new iteration of what used to be called Explorer scouts, a co-ed group of teens who meet, plan, and do. So far, he's accepted despite his disability, and he absolutely loves it. Hanging out with kids his own age who go out and do things in the community and beyond has been priority #1 for FF.
• DD's new job in a deli, means that she's learning and doing a variety of tasks--stocking products, kitchen prep, mopping floors, and--yes--even picking chicken off the bones. Caught between her OCD and Aspiness, this isn't something DD could have done even a year ago.
• FF took the written driver's exam. Although he didn't pass, he was close, and that satisfied him for the time being. 
• DD is doing well in her art history course and is meeting with her tutor for editing help on her papers. 
• FF is working out with a trainer and independently several times a week at Anytime Fitness. He's lost several pounds and really enjoys the workouts.
• DD attended a TedX event with a friend. (I highly recommend this to any young person who's not quite sure where they're headed. Lots of inspiration.)
• If I leave out the container on the counter, FF will sometimes take his meds without the annoying Mom Reminder.  
• FF began working with a new peer mentor. They're headed out to a movie tomorrow afternoon. 
• DD and her therapist are working on goal setting and academic paths that get her to those goals. 
• Earlier this week FF worked for almost 2 hours with his new writing tutor, who helped him edit his latest essay (on March Madness, of course) and showed him a few tricks on Dragon. He's never worked that long without multiple breaks on a writing task. It helps that she's cute and very upbeat.

Yes, DD's calculus class was a frustrating debacle (instructor issues). Yes, FF is impatient about his progress. He wants to transfer to a four-year university where he'll have more social activities. (The revelation that he needs 26 credits to transfer and that, so far, he has no transferrable credits has been crushing.) Yes, he wants to live in a dorm. Now. And, yes, FF wants a job where he can work more than 4 hours a week.  

Patience, my son. We're working on it. On all of it. 

Independent Living for Young Adults on the Autism Spectrum

Son Fickle Fan doesn't want to live with us. This isn't a shattering new revelation. He began delivering that message in the clearest possible terms as early as 8th grade. It's not that he doesn't love us or is angry with us (at

least not this very minute); it's just that he takes his independence very seriously. Now, on the edge of 19, he's desperate and adamant--he wants to live in a dorm first and then an apartment with other kids his age. 

To him it's just that simple. And in his mind, it's my job to make it happen, as if I were a genie in a bottle. For someone who wants so much to be independent, he's almost entirely dependent on us to provide him with solutions. Once again, as the deliverer of ugly reality, I'm at best Debbie Downer, and in the really challenging moments--last night, for instance--I'm the sinister source of obstacles.

I don't want to be that person. But I'm not wiggling my nose or nodding my head to "make it so" either. As parents, my husband and I try our best to do everything we can to give him a fighting chance in the world (which is not quite the same as making his every dream come true). Getting him a tutor to help him through a writing class, for instance, gives him a chance to succeed, but HE still has to do the work. 

We're struggling right now to find out just what that balance of leveling-the-playing-field-but-helping-him-work-toward-and-earn-a-goal means in terms of independent housing.

Surprised to hear that a young person with high functioning autism would want to live independently? It's true, there are many people with autism who would prefer to live at home with their parents and pets, surrounded by everything that's familiar and comforting for as many years as that's possible. FF, though, like many other people on the spectrum, wants and fully expects to live independently just as his peers do. As always, he wants to do everything the "typical" world does (or what he thinks it's doing based on what he sees on television or in the movies). Doesn't matter if he doesn't have the money. Doesn't matter if he has never cleaned a bathroom or done a full load of laundry in his life. Doesn't matter if he refuses to answer his cell phone or can't ride the bus on his own yet or wouldn't know what to do in a crisis. 

We've gone round and round about whether and when FF can live in a dorm or an apartment with a roommate or two. Don't get me wrong; I really want FF to experience dorm life (for at least a little while) or live in an apartment with other college students. Once again, though, he refuses to entertain the possiblity of living with a roommate who has a disability, so even though it might come with the chance to live in a dorm for a few weeks, many of the summer "camps" for adolescents on the spectrum are absolutely out of the question. We can also cross off group homes from the list of living options.

So are there ANY housing options for people on the spectrum like FF? Not that I'm finding. Lots of families of higher functioning but not-yet-independent kids seem to be winging it, piecing together their own housing and support arrangements. It's time consuming, somewhat risky, and not cheap. 

In our case I would like FF to be able to try out living on his own for a short stint. But there are no residential living options at the local Ivy Tech Community College. To my knowledge there's no way for him to live in any college dorm unless he's registered as a student. I would love to see more colleges open up their unused dorms to high functioning students who could test the waters, learn life skills, take advantage of the campus resources and activities, and even audit summer classes.  Anyone out there doing this? 

In lieu of a somewhat supervised campus living arrangement, we're considering subletting a not-too-far-away apartment for the summer, where FF could live with a same-age peer. This person would have drastically discounted rent in exchange for making sure the community police, fire and emergency personnel aren't on a first-name basis with my son by the end of the summer.

The Mom Worries are as follows:

• Transportation. To and from work. To the store. To the gym. To class if he decides to take a summer class. Something on a bus line that gets him to all those places would be preferable. 
• Money. Currently, he's making all of $36 a week, and that's gross income. We would need to pay his rent and the majority of the rent for his roommate. Did I mention we already have two mortgages due to our odd living arrangement. (Don't judge. It's worked for us.)
• Medications. We could certainly come in once a week and set up his daily meds, but we might need to rely on the roommate to remind FF to take them every morning and night. Not sure how that would play out. 
• The Eddie Haskell roommate. We would need to screen interested candidates. How do we know that looks-and-sounds-perfect-on-paper won't turn out to be a slime bucket or, worse, inspiration for an episode of Criminal Minds? (And if you're googling Eddie Haskell right now, you're probably too young to be reading this blog.)
• Roommate can't take it. Living with FF is an acquired taste. Letting the roommate know what they're in for should be v-e-r-y interesting. 
• Seculsion. Having a roommate will help, but it won't be the roommate's job to keep FF entertained. We might have to continue to pay a peer mentor to check in on him and take him out once a week. (See "Money," above.) 
• Clutter and crud. This will be a good opportunity for FF to test his cleaning skills or lack thereof. I really don't want to have to be the weekly char woman. And, no, I'm not a neat freak. 
• Laundry. See "Clutter and crud," above. Eww.
• Food. FF is an expert microwave button pusher. And he excels at snacking. Will any of it be healthy? I think we know the answer to that one.
• Inflated expectations=deflated boy. FF's unrealistic expectations about living independently (think Animal House with a toga party every night) could result in frustration and depression pretty quickly. While having him experience all the ups and downs of living on your own is actually WHY we would do this, I wouldn't want him to become despondent.  
• Satisfied expectations. And what if he loves it? My hope is that it'll be a good learning experience, with some good times and some eye-openers, but that he'll be ready to move back with us until we figure out the finances and a more permanent living situation for him. I want him to like it; just not too much. My fear is that after a taste of independence, moving back home to live with his parents, older sister, and cat could be disheartening. 

I realize that a slew of those Mom Worries sound just like the ones any parent has for a child about to go off to college or leave the nest. And they are. But spectrum issues always make things much more complicated.

So, those of you in readerland, has your young son or daughter on the spectrum tested dorm life or lived in an apartment? What's worked and what hasn't. Any innovative new housing strategies you can tell us about?  Please post your comments below!

"Our house is a very, very, very fine house, with two cats in the yard..." It's just not the house FF wants to live in anymore. Maybe it can still be a nice place to visit.

BMV Revisited: A Driving Desire to Drive

Son Fickle Fan just flunked the written driver's ed test. And he's okay with that. So are we. 

For months, FF and I have been wending our way through the Indiana Rules of the Road manual in preparation for the Bureau of Motor Vehicle's multiple choice test. We'd go through a chapter or a few pages whenever I had a day off work that wasn't otherwise crammed with appointments. So he's been prepping for this for awhile, but he also knew from the get-go that:

• he might not pass the test on the first try.
• he can take it again.
• passing the test does not necessarily mean he will ultimately get his driver's license.

For those of you newbies, who've just joined us, FF already has his state ID card from the BMV. You can read about that experience here. 

The fact that he was just fine with not passing the test today is in itself a victory. No meltdown. No outrage. No extreme disappointment. We actually went out for lunch afterward to celebrate the fact that he'd taken the test. It's that level of maturity that gives me a lot of hope. 

Let's detour here a little, though. Am I shocking a few of my readers out there? Are you turning blue at the thought of someone on the autism spectrum driving through the streets of your town? First of all, you shouldn't be. More and more Aspie adults (including Daughter Dearest) are on the roads. See this recent NY Times article on the subject.  Moreover, a study from Children's Hospital of Philadelphia indicates that adolescent drivers on the spectrum actually have fewer accidents than their neurotypical peers,  possibly because many of them are very cautious and are sticklers for rules, and many tend to drive short distances, avoiding highways or traffic congested areas. 

Secondly, having a driver's license can make a huge difference in the ability of a person to live an independent life--go to college, live in an apartment, run to Target and "do the Dew" whenever they want, and (most importantly) get a job where they don't have to be dependent on public transportation. You would be amazed at the number of people with disabilities who have to get up in the wee hours of the morning to catch a 6 a.m. bus so that they can transfer and bus hop across town to work at their jobs. You probably wouldn't be as surprised to learn that a lack of flexible transportation is one of the primary obstacles to getting and keeping a good job. 

So, yes, we support FF in his dream to get a driver's license. But do we worry about that? Have ya read this blog before!?! Of course I'm worrying! It's what I do.

He actually squeaked by and passed the rules section of the test today but had too many wrong answers on the road signs section. But, knowing FF, he will pass the test. He now knows what he needs to study and he'll get it done. Plus he admitted to lots of stomach churning this time. He was nervous. Now that he knows the routine, he'll be much more at ease next time out. 

Then what? Oddly, the Indiana public school system no longer requires or even offers driver's ed. Not sure when or why that went away--budget cuts, liability, beats me. So Hoosier teens can either pay to take driver's ed with a private instructor or company, or they can just take the written test on their own and then obtain their required 50 hours of driving practice with white-knuckled parents or another responsible, eligible grown-up.  

I would've preferred group training instruction for FF combined with simulator driving before he ever has a set of keys placed into his hands. Neither of the private instructors in town offers simulator training. But Easter Seals Crossroads in Indianapolis does and last time I checked (admittedly it was awhile ago) so did a hospital located about an hour from us. Both have programs specificaly designed to teach people with disabilities how to drive. From what I had heard, individuals who've passed the written test can appy for a slot in the training program, but there may be a long wait until they're admitted to the program. I also know that this is another service we'll be paying for out of pocket. 

But one of the most important reasons to use the instructors at Crossroads is that they'll make the ultimate call as to whether or not FF should get a license at all. They're in a better position to assess his level of judgement, focus, abilty to make quick decisions, and all the other components of good driving that could be challenging for him. No matter how many hours of training and drive time someone logs in, he/she may not, ultimately, be able to be a safe driver. Having that decision come from a trained third party is extremely important. 

Meanwhile, we're still trying to log in some bus-riding practice.