advice for parent of ASD/High functioning aspergers child

Parents Forum
1

Hi- seeking advice to help prepare/support my high functioning asperger’s child before and during college. He has applied ED to an Ivy league school, but if he doesn’t get in his second choice is RIT which truthfully might be better for him anyway. He is incredibly smart, but has many of the traits of Aspererger’s kids: social anxiety and withdrawal, issues with motivation, self-care, cannot seem to wake himself up for school, etc. His grades have been all over the place in high school despite his ability (he got a 1590 on the SAT without studying), but this semester he is getting straight A’s without parental involvement on the homework side. Still, I worry about him going to college and never leaving his room to be with friends (he rarely leaves out house except for school); his ability to co-exist with a roommate (he doesn’t seem able to regularly take showers or clean his room) and wake up for classes.

Are there any parents out there who have been there/done that and can give me advice on how to prepare him before he leaves?

2

A close friend of mine’s daughter sounds very similar to your son. She got a part time job her senior year in high school and really started to become more responsible for herself. She’s a freshman in college now and is absolutely thriving. Much more so than her parents’ expected. I hope the same for your son!

3

thank you!

4

@sbjdorlo I’m thinking your perspective might be helpful here.

5

Not a parent of a spectrum child here, so ignore if you like:

If your son is not getting up, showerign, cleaning his room/doing laundry , Homework?:
Is that because his executive functioning skills are not there for him to do these things…or is it because you, like many parents of teens, you have taken this task to remind him to do things on yourself.

If he cannot do these things…is he ready for college?
Because he will have a new room, new roommate, new food, new teachers, new school.That is alot for any teen to adjust to.

Maybe start talking to him/his therapist about figuring out how he can start to take charge of some of these things.
With my daughter, I had her start doing things that I know that she would have to start doing in college like keeping track of her medicine/ordering it, etc.

Maybe starting next semester, let him know that you want to make sure he is prepared for living on his own and go over the tasks that he needs to do…shower daily/every 2 days, wash clothes every 2 weeks, get up, do homework
Maybe introduce one every couple of weeks?

Showers: https://www.ambitiousaboutautism.org.uk/understanding-autism/health/hygiene

One of my friends has a son who I think was undiagnosed Aspergers…he went off to college and didn’t make to Thanksgiving before he was asked to leave as he was not attending classes or anythign. I think his mom was a stay at home mom and always worked with him to do homework/etc. All of a sudden instead of being in one physical building where you were dropped off at and kind of have no choice but to do to classes, it is up to you to 1) Wake up
2) know what classes you are to do to that day 3) Go to the first one 4) Go to the next one (esp if there is a break)
5) Keep track of assignments 6) Keep track of due dates 7) Do the assignments/readings 8) Turn in the readings.

Seems to me a program like RIT Spectrum support would set him up for success.

6

@nativeNYer,

I was tagged in this post because my middle son has some similarities to yours. He, too, was a natural test taker (though not as high as yours; his SAT was 2230 back in 2014), labeled profoundly gifted (and very, very twice-exceptional) and had good grades overall, but his rigor was weak and he struggled with getting up, organization, and so on. He was also homeschooled, but was full time dual-enrolled in his senior year.

He is not on the spectrum, but he’s a strong introvert and has struggled for many years with severe depression, anxieties, and OCD among many other things (LDs, T1 diabetes, and more). He has excellent social skills in the right environment.

He was admitted to Penn RD and chose to attend after a gap year. He lasted 10 weeks before coming home (we live across the country). Penn was not a good fit. True, he got sick three times in 10 weeks which made it impossible to keep up with work, but the students were so different from him (Penn Whartonites vs. an introverted creative Fine Arts major-not a good fit) and the academic rigor was more than he could handle. He didn’t really connect with any students, and did indeed spend a lot of time in his dorm room.

I did not want him to attend, but he insisted it was his “best option”. In retrospect, he couldn’t have been more wrong, IMO. It’s taken him two years to be ready to try again as a transfer student from the local community college in a totally different field (cello performance) than when he applied as a freshman.

He still has a lot of mountains to climb and continues to struggle, but this time, we’re focusing mostly on schools close by, eschewing any “name” music conservatories. I’m hoping he lands at the academically easiest college possible, TBH. He needed/needs to be in a small pond and not a big ocean.

I can’t say that your son will have exactly the same issues, but I do know RIT, and I think it sounds like it would be an excellent fit because of their special needs support. Having said that, Penn had a great disability office and strong support. The hard part is the fact that special needs kids still need to advocate for themselves; at a place like RIT, that’s going to be a lot easier to do than at an Ivy.

I wish your son the very best.

7

Also JMHO but I have to echo what bopper has stated.

If your son has trouble with self care, motivation, waking up, social issues and doesn’t shower, he isn’t going to be successful with group living or being on his own. The first place to start would be therapy to address these issues. The bigger picture is also that these things are very important to hold down a job and be successful in a career. It ins’t enough to be academically talented. Ultimately your son will need to work with others and especially, if planning to go away to college, will have to live with others.

Honestly maybe community college coupled with therapy is the place to start with the goal of being able to live on his own (which is what college is) would be a more reasonable plan.

I feel for you and your son. I wish you the very best.

8

Our ds has somewhat better EF than what you are describing (I never had to tell him to shower or wake him up or tell him to do his laundry, but has extreme anxiety and obsessive behaviors that have made functioning as an adult a huge struggle. I wanted to echo other posters. Your ds does not sound like he is ready to be in an environment where he is expected to be completely on autopilot.

What would happen right now if you went out of town and left him alone for 6 months with enough $$ for ordering food? Would he go to school, complete his homework, go to sleep, wake up, do his laundry, take himself to the dr if sick, eat healthily? Add the stress of a completely new environment, unknown students and profs, irregular classroom times, how many balls is he going to be able to juggle at once?

When our ds was around 14, one of his therapists made a comment that made me incredibly angry and defensive. He said, “All of the education in the world won’t matter if he can’t hold a job.” I was so insulted for our ds. He was incredibly intelligent and an excellent student. Unfortunately, they were probably the most accurate words ever spoken to me by anyone who has ever dealt with my ds.

If I were in your position, I would be far less concerned about the ranking of the school and far more focused on real, effective, in-person on-campus supports. The best model I have seen is WKU’s Circle of Support. It is the model I would look for based on your description. https://www.wku.edu/kapcircleofsupport/

9

http://talk.qa.collegeconfidential.com/learning-differences-challenges-ld-adhd/. Lots of good info here

10

Some excellent advice from previous posters, and I would reiterate what you have already read: self-advocacy is the key to this transition. The Circle of Support program at WKU lists the following prerequisites for entering students with Autism:

Able to perform the following pre-college life skills:

Order and take medication independently
Get up independently and attend class
Independently manage a debit card
Keep dorm room clean
Independently perform routine hygiene routines
Independently wash clothes on a regular basis
Cook simple meals
Independently able to balance work versus leisure
Independently transition from preferred activities in order to complete responsibilities during free time
Independently manage sleep schedule

If your son is challenged by any of the above, perhaps start with teaching and incorporating these skills now?

11

No advice but we have a friend with similar issues at RIT who is thriving. They have a wonderful Spectrum Support Program. We also know a student with Aspergers who is doing great at USCal, though I suspect RIT has the better support of those two.

12

We have a child who is similar. Brilliant to the point that it’s almost a disadvantage. And could barely get through any sort of school because of EF issues. Our solution has been a gap period – like we jokingly call it a gap decade but what we are probably seeing is more like this child is probably going to start college at age 22 if child stays on current trajectory.

I can’t stress enough how great it’s been to simply RELAX about the college timeline. The worst mistake is for your child IMHO to go to an academically rigorous school. Especially if his other issues are not addressed. Part of what will address his issues is being allowed to grow up. Brains are not fully developed until mid 20s. EF part of the brain is the last to get integrated (basically).

Our child spent 9 months after HS graduation in bedroom (agonizing period) leaving for therapy and runs with mom each morning, plus chores around the house – just to keep some sense of being a part of the world. Clearly depression was an issues. Anxiety is the flip side of depression IMO. After 9 months child walked into the living room and said that s/he had a place to live, a job, and it was about 1500 miles away. We levitated from the couch and discussed things quietly with child. Child left anyway with a pittance from his/her piggy bank, feeling rich. Another agonizing year ensued. Child returned. That was last April. Hearts, spirits, and trust were repaired. Currently child–having discovered the limits of minimum-wage fast-food work–is interviewing at internships that PAY (!!). Child found an organization in the city where we live that provides professional training for young adults ages 17-24 who are not in school and who have no work. They then send them out for interviews at real-live places that actually pay real cash. This feels like a miracle for us. I’ve never seen this child more confident, more at ease, and dressed in a nice suit and hair neatly done (room is still a disaster, but you know: priorities!) If this continues, the EF skills seem to be catching up and child should be ready for college soon–within a year or so. Plus this child will have the advantage of having worked several years, having defined his/herself somewhat and discovered interests, and I predict will have focus in college, when the time comes.

I strongly recommend letting children take lots of gap time. It’s true that twice exceptional children are children that are developing skills asymmetrically. They are gifted in one area, and deficient in another. This doesn’t surprise me as it takes until age 25 (about) for the human brain to come fully on board. The frontal lobe, which controls executive functioning, is fully integrated at around ages 24-25. Knowing this helped us relax the timeline for this child and allow him/her to develop without the constraint of school – the deadlines, the pressure, the expectations, the requirements that don’t interest etc. etc. etc. We also told this child that it’s not that s/he CAN’T go to college, s/he doesn’t seem ready yet. And that when s/he is ready, s/he will know. It will seem natural at that point.

So far this has proved true, at least in this one instance with this one child.

13

We have a close friend who has Aspergers, attends local flagship near home, found supportive living arrangement, where he can live on campus all four years, and I think he is now much more social in year three. All boys but especially Aspergers students need TIME to get to know their surroundings. I think we expect too much too quickly and then that sets up students for failure. Also isn’t social life totally overblown, the importance of it? I think so,
but maybe i just was more studious than most, and like being alone.

Your son must play to his strengths, and if social life is not his strength, then he can become very successful in MANY careers like actuary, computer programming, or law, which require concentration and solo work. There are dozens of other careers that require almost no social interaction, but depend on skills and intelligence.

If its not too late, I would encourage him to apply to other schools with good supportive living arrangements.
Self care may come with time away from home. Don’t overthink this,although I understand your worry, he may be able to do fine. RIT is good for many majors, in arts, CS, optical engineering, photography, and the program there is supportive, for twice exceptional students.

I see about 1/3 of Colorado boys, from our region, often have undiagnosed learning differences pop back home after a semester out of state. This is not talked about much, but many boys do not adjust to college life away from home, maybe some of that is maturity, or other factors.

14

@nativeNYer Your son can and maybe should request a single room in freshman year, if he feels that he would
be more comfortable. Comfort is key to success in college. Once he is comfortable he may be able to make a friend or two, as he matures. Friendships take time for anyone. Friendships are something extroverted people need more than introverted people. If he is happy, thats the important aspect of life. Many people, including my older son and husband are perfectly HAPPY studying, all day long, and then walking their dog, for instance, or doing a solo activity, like sailing ! They THRIVE on alone activities, with limited social time. If they get too much social time , they shut down in fact. Not everyone needs lots of friends. One might be enough! In fact many introverted people are happier alone. I don’t know if your son is introverted, but he may be more comfortable without pressure to “make friends”.

15

I personally think gap time can cause depression in some students, but I appreciate that some students may mature enough to attend college. Your son is very INTERESTED In studying, so I don’t see a gap year being necessary for him.
Gap years if they are not well planned, are just idle time. This student can study independently and is ready for college study life and wants a challenge. He just does not have social aspects mastered, so RIT may help him make gains there, but having lower parent expectations on social gains is KEY. Parents need to change, NOT the student. The student may be happy with once a week showers, and no social life. inadequate hygiene will eventually lead to health problems though so continue to work with his intellect on why hygiene matters. Its not just about dates, its about health.

16

No, once a week showers is unacceptable in this century. The student needs to change that if he is ever to leave his room. Not stinking is part of being around others.

17

@Coloradomama This parent absolutely not need to change perspectives. This student has a disability. You have reduced his very real deficits to simplistic personal choices. That is not reality.

As the parent of a 26 yr old Aspie who has an extremely high IQ but cannot simultaneously handle all of the responsibilities that come with adulthood, watching them struggle is very, very real as are the concerns about them beiin able to function.

18

I also have an ASD son, and this year he gets up on his own, and slowly we have been trying to “adult” him. He does shower, but its debatable as to how much he cleans when he showers :(. He also has a weight issue. We decided to go ED to RIT and we are very happy. We are signing him up for the spectrum program. He applied to a competitive school as well for EA (which we have to withdraw now), but even if he got in, I was very scared to how he would do.

One other thing that has worked great this year, is through his high school he is a doing an internship. He has learned how to professionally interact , and stick to a “work” schedule. This summer he is hoping to be working a computer camp.

I have thought about a GAP year for him, but in his case, I think it would not be helpful. I believe with RIT and a support program in place, he will do fine.

19

Regardless of whether a family decides that gap or school is the best choice, what seems to be a common thread, here, for successful kids, is support. It’s exhausting to have to parent to this extent, but it’s the sort of loving gesture that helps them ultimately keep moving forward. Small advances are good enough.

RIT seems to be another common denominator.

Could people please weigh in on whether their RIT student is involved in a formal support program or not? Could they describe the support the child is receiving (I ask because maybe my gapping child might find a place there . . . )

Thank you!

20

@Dustyfeathers we are not there yet, but from a FB group i have talked to other parents. They offer a mentor for your child either once or twice a week. you can read more about it at their website. https://www.rit.edu/~w-ssp/ All the parents i have talked to have said that it really helped their kid. They started with twice a week freshman year and has tapered off, and some of these kids are graduating now. They also offer a pre orientation program as well. Note that this is all of an extra cost, but worth it to me.