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.