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.