Hi, always great advice and perspectives from this forum. My son went to orientation yesterday and went well as far as I can tell. He said he made a friend, however only knew his first name, town where he lived and not much else or exchange information to keep in touch. We stopped by the Disabilities office, but not much for the school year could be implemented until after the first week of classes so I had him sign up for a meeting with the disability counselor. I did have son sign FERPA forms at the Disability and Health offices to allow for exchange of information between these offices and parents. He knows he will be in a living/learning community in his intended major and not have a roommate (as an accommodation request). He signed up for the lower end of full time student status as recommended by me (and dad thought it wasn’t a bad idea). He had a couple life-threatening health issues relating to his UC this past semester. I discussed with him about disclosing his disabilities to the RA and he plans to do that. I’m hoping the RA will be a resource to look out for him/ recognize if there is a medical emergency and assist to find a way to get him where he needs to be. We live 3 hours away from the college. I think that at most colleges there are ice breakers on the floor with the RA so students get to know each other. I’d like to hear perspectives/advice as to when/if to disclose to peers about ASD/UC. If you suggest disclosing, how/when…at a group ice breaker or only to individuals he feels a connection? Obviously, this will be his decision. The rooms on his traditional floor will be doubles…but he will not have a roommate, so it is possible that this could raise some questions. I am trying to see things from his perspective…a teenager/trying to fit in/not wanting to be defined by disabilities. College will be a big transition. He has been an online student most of his hs career and no college level courses.
Not an ASD or UC parent, but some thoughts:
UC I assume is Ulcerative Colitis. Is he self aware when he is having life threatening issues? If a person had, say, diabetes, I would tell those who lived around me that if you ever see me acting drunk/sluggish/weird that my blood sugar may be low and they should call the RA/call the health center/get me a soda/whatever.
For UC, is there something similar?
I wouldn’t do that at an ice breaker but maybe after a week or so to the to the people who live around him.
For ASD: What type of issues has he encountered with his HS peers?
What kind of school is he at?
https://iancommunity.org/cs/adults/deciding_when_to_disclose
As this article says:
"DISCLOSURE: PROS AND CONS
Every disclosure decision involves a careful weighing of pros and cons. Sharing information about an ASD may help people appreciate the challenges a person on the spectrum faces and the extra help they may need. It may increase empathy and smooth the way forward. It may also result in a negative or prejudiced reaction that makes everything harder.
Of course, not disclosing can carry its own risks. How will quirky behaviors or responses be interpreted in the absence of solid information about ASD? Will a person be viewed as intentionally rude when he was just being honest-without-a-social-filter in the way people with ASD often are? (“You sure have gotten fat.”) Will a repetitive behavior be viewed as evidence of an intellectual disability or some kind of emotional instability when this isn’t the case? Even a little bit of rocking in your chair, or frequent pacing, can look strange, signaling mental illness or some other impairment to observers. Is it better to give the explanation that’s right, and with a dose of education, than to let assumptions that may be very negative flourish in a vacuum?
One key element of any disclosure decision is a realistic appraisal of how a person with ASD appears to others in whatever context. Does a young adult believe she can function in a specific situation without help, and that others won’t view her in a negative light due to any ASD-associated behaviors? Is she correct in this belief? A trusted friend, relative, or therapist may need to help her evaluate how she is perceived, and to what degree disclosure is optional."
@bopper…great insight especially from someone not having a child with ASD or UC (yes, correct-ulcerative colitis). The life-threatening UC issues this past semester started out looking a lot like the flu and just not feeling well. I have learned that he can go downhill quickly and if flu-like symptoms, it is better to go and be tested for cause than as the rest of the family would do, wait to see if you feel better in a day or two. He developed sepsis (lowered immunity due to med he is taking) and the Dr. at the hospital implied that if we had waited another 12 hours, he may not have survived. From his perspective, he seemed to enjoy the orientation…claims to have chatted with others, explained some of the activities they did which sounded way more fun than the hours of information parents/sib received in a lecture hall. It is difficult for me to tell how well he fit in with peers. He routinely wears a button down shirt/khakis/loafers and did wear this to orientation where most of his peers were more casual. ASD issues can be difficult to identify until they happen…like if he can’t figure out where to go, I could see him just not going instead of asking for help, but then sometimes he will surprise me by figuring things out fine. I kept my cell phone on at orientation in case there was some reason he needed my assistance, but he did not. We sent his picture in earlier as instructed so he wouldn’t have to wait in line at orientation, but he said that he had picture taken at orientation because they didn’t give him another option and there was no wait line, so that apparently went okay even if not as planned. He had lunch with another student and that seemed to go well. College is a medium sized state public. When he attended HS, most peers seemed to accept him for who he was, maybe not hanging out or being friends but weren’t mean, but there are always a bully or two in the mix.
I would not expect an RA to anticipate a medical issue. I would make sure your son has a primary care doctor set up and then he should meet with them and figure out a plan for keeping him healthy. Would a regular check-in help?
Disabilities office won’t be good with medical stuff either. They will probably give him letters to take to the professors (diagnosis won’t be on there, your son will have to explain or not disclose; either way the negotiation is up to him. Some schools list accommodations granted and some leave it to the student to work out with the prof.)
A single will most likely cause questions and a medical explanation is better than saying anything about the ASD. Your son can just say he has a medical condition or he can say “ulcerative colitis.”
I don’t think it is necessary to disclose the ASD.
Three hours is a long way. Kudos for going with it. You may end up spending some time there so find an Airbnb you like!
Make sure to get tuition refund insurance!
The RA is there to help with problems but can’t be relied on to do day to day check ups. Can you have a system where your son texts you twice a day (‘Everythings okay’) and then if you can’t reach him you call the RA or the school? I’d be concerned that he needed help in his room and no one knew he was in there.
I think he’ll be fine. If he made a friend on day one, he should be able to make more. It’s not unusual for kids not to know ANYTHING about their college friends. I ask mine ‘Oh, where is she from, what’s her major?’ and I get blank stares. My kids are very social! Those things just aren’t important to some kids.
Thanks @twoinanddone. I do plan on having a him to keep in contact with me through text, but need to have exact details in place…like how often. I think he will understand that if he isn’t feeling good he needs to at least communicate that to us at home. Neither of my two are very social so it is good to hear that his lack of information on his “friend” may just be normal teen interaction and not necessarily ASD related.
My DD had abdominal pain…went to urgent care…they told her to go to a hospital for ultrasound…she still waited a couple of days to go (cuz she had organic chem lab and didn’t want to miss it)…also turned into sepsis and a week in the hospital.
So she dropped Ochem for that semester and got accomodations through the disability office for extra time while she recovered.
So for your son make sure he tells you when he isn’t feeling well even if it is just feeling off.
Also check out:http://talk.collegeconfidential.com/college-life/1808143-having-trouble-adjusting-to-college-making-friends-top-10-things-to-do.html
@bopper…that is scary about your DD. Good tips on making friends in the link. Any tips about whether to disclose, how and when or personal experiences with disclosing disability status is welcome. I am planning to contact our insurance to see if there is a preference of which of the hospitals in the area are in network…this is probably a good idea for anyone whether student has health issues or not. It is good to have a plan if the unexpected happens.
Two of my kids have a lot of experience with this (disclosing). It really is a personal choice and varies with the individual.
I think the kids are more knowledgeable than we are about what to say, what other kids expect, etc. ASD can mean so many things and the kids are much more used to it than we parents were at that age.
I think I’d go with disclosing what needs to be disclosed. A friend has a number of disorders and she doesn’t give the laundry list to everyone, but might explain that she takes medication that makes her tired so goes to bed early to one set of friends/classmates, but that she has Tourettes to another set (which she controls with a gluten free diet) with whom she eats.
My perspective is of a mom who sent her ASD all the way across the country. We considered a single, but we thought that he had to learn to get along with living with someone else if he ever wanted a successful roommate situation (where we currently live, it’s not practical that an entry level employee can live alone) or significant other/spouse. With the UC issue on top of it, I would probably go the way of a single.
I don’t think we disclosed to either the RA or the roommate (though looking back, we wish we had disclosed to the RA). My son had an anxiety issue in October, and since they didn’t understand him or that his seeming meltdown didn’t put him or others in any danger, he was sent to the ER by campus police. His roommate did have our information, or his parents did, and he was the one to let us know where our son was. He was released in a matter of hours and he took an Uber home and his roommate waited up for him and was understanding. I think most kids this age have grown up with a tolerance for spectrum kids (our community was very understanding, so maybe that skews my perspective). My son will not be living with that roommate (no issues, just no friend connection) but living on a floor with a friend who knows his issues and I think is on the spectrum himself. But the first thing my son will do will be to disclose to the RA (at least I hope, or we as his parents will).
Other than what you have already agreed with your S (the RA and Office of Disability Services) I would be sure that Heath Services is aware of his UC. I know it will be on the health forms but your S may want to stop by and touch base with them at the start of the year. Other than that, I would leave it to your S to decide who he wishes to share this information with and when he wishes to tell them.
Arrange for an appointment with primary care (you can help choose) as soon as he is on campus. Then the connection is made, he is in the practice, and if trouble arises it will be more streamlined.
One of my D’s roommates has a serious medical condition (not UC though). She sat the other three roommates down the first week of classes to explain her condition, some of symptoms and challenges, and also what to look out for. She pulled the RA in to the discussion as well. They are all very supportive and look out for her.
Aside from what’s already been suggested, be sure that the friends (or RA) your child confides in has your contact information. Sometimes they are the first to know there is a problem and can give you an early heads up.