Son is RA to a student with Aspergers - any advice on helping this resident

Parents Forum
41

<p>

</p>

<p>

</p>

<p>Aspergers was standardized as a diagnosis in 1994…ironically, the year in which a 35 year old would have turned 18. I was a special ed major, beginning in the year in which a 35 year old would have been born, and there was no “Asperger’s” - heck, we devoted all of one day to autism in Intro to Special Ed. “Austistic kids” were the ones who stared into space and never made eye contact.</p>

<p>My son was diagnosed in 2001 and I had never heard of Aspergers before then.</p>

<p>If you look back in movies, literature, etc. the Aspie has always been a “stock character” - there just wasn’t a name for them…maybe the Absent Minded Professor…the jerk who doesn’t know what to say. Yes, Asperger’s may be over diagnosed, but public awareness is a good thing.</p>

42

<p>I was relieved to hear about how the low blood sugar was handled. I would not have imagined paramedic involvement with a person who is still conscious, but I am glad for the RA that the college did not entirely rely on him for the situation. He sounds well-trained and knowledgeable, and could be a great resource for students with health issues.</p>

<p>Since others may read this thread, I would just like to clarify my sentence, quoted by Missie Pie about the disabilities office and “other resources.” By “other resources” I meant coaching, tutoring, counseling, advising, not services by the disabilities office, though the disabilities office can sometimes facilitate access to those services.</p>

<p>I have three kids who have been registered with disabilities services at three different colleges, and in each case, the disabilities office did, in fact, “come to them.” Naturally we had to make the first contact and send documentation. But after that, the disabilities office arranged for meetings with the student, and gave each a letter to give to professors. Discussion in the meeting gave info on other resources which, yes, are not offered by the disabilities office but are accessible on campus. Parents can help set those other services up, before arrival on campus, but the onus is on the student to access them.</p>

<p>During crises, the disabilities office has been involved, as well as the dean or other administrator assigned those duties for students.</p>

<p>I just don’t want anyone to read this thread and think that registering with the disabilities office is somehow not helpful. But also, I wanted to clarify a sentence of mine that was badly written, and that other resources are often offered on campus that do not go through the disabililties office, but about which the disabilities office and provide information.</p>

<p>The student with Asperger’s may find better options than this school, and the student and parents may very well have met with the folks who could help him improve his experience, and still decided against him staying. But for others who are reading this thread, we have experienced remarkable help and support from schools in circumstances that were equally challenging.</p>

43

<p>@aj725, You may find this link interesting:</p>

<p>[Famous</a> People with Aspergers Syndrome](<a href=“http://www.disabled-world.com/artman/publish/article_2086.shtml]Famous”>Famous People Who Have or Had Asperger's Syndrome | Disabled World)</p>

<p>Since Bill Gates is listed on the link, as a contemporary person, I guess it’s okay to mention that is the person I was referring to in my post #40.</p>

44

<p>Compmom, that would be an excellent issue to discuss with the Dis. Office when a student is considering a school…are they proactive, or must every contact be initiated by the student?</p>

<p>

Why my son had his “crisis”, the prof was involved, the school psychologist was involved, the dean of students was involved…but not the disablities office.</p>

<p>Of course, every disabilites office will tell a parent what they want to hear, in great generalities…perhaps when interviewing the folks in the office, maybe a parent could ask a series of hypotheticals, “What would you do if xxx happened?”</p>

45

<p>aj725, I understand why you’d ask that question. I know it’s very difficult to understand. I have autism myself, but mine is quite mild and sometimes even I struggle when I am around people with much more severe autism than mine. Some autism symptoms can be helped through therapy, but the therapy required is intense, it is difficult, and it is very difficult to come by. As has been mentioned, asperger’s was not a recognized diagnosis until not all that long ago and before then the people who had it were left with no supports. Even now we are well behind the times, my own wasn’t diagnosed until I was well into my 20s because none of the doctors I had seen up to that point were educated enough on the subject to see it. </p>

<p>And let’s say, for arguments sake, someone IS severe enough to be more easily diagnosed in this day and age… testing costs a fortune. It can be anywhere from 3 to 5 thousand dollars. Insurance usually doesn’t cover it. Finding doctors that do the tests, especially on adults, is extremely difficult. Autistic people have a VERY hard time advocating for themselves and navigating this system that is difficult for normal people can be impossible for them, if they did not have the experience of trying to get diagnosed as children so that their parents could advocate for them (which I and your colleague obviously did not have, as autism diagnosis was too new when we were dependent children) it can be impossible to do. </p>

<p>And then let’s say you get the diagnosis. Services for adults are almost impossible to find. I have yet to find ANY doctors, ANY services, and ANY help that actually applies to me-- it’s all for children. Much of the medical world is under the impression that autistic children never grow up into autistic adults. Check your local library for books about autism-- I bet all but one or two of them will be about children. I’ve been actively looking for someone to help me learn how to cope with my autism symptoms since I was diagnosed almost two years ago and I have yet to even find a psychologist who feels equipped to administer talk therapy, or even a general practitioner who can manage to treat me when I have a cold without being grossly offensive because she doesn’t have a CLUE what asperger’s syndrome is and tries to tell me to just get over it. And if you can FIND someone to administer services for autism, it costs a fortune and-- you guessed it!-- often isn’t covered by insurance.</p>

<p>And let’s say you managed to get diagnosed AND find doctors to care for you (at this point you’ve probably won the lottery as well, so insurance isn’t an issue)… autism is not curable. It often takes a very long time in very intense therapy to even see a marked improvement. It is a very, very difficult struggle.</p>

<p>I’m not saying your colleague isn’t obnoxious and that he couldnt do better, but you have to avoid the impulse to liken him to a bratty child. Autism isn’t caused by bad parenting and cannot be cured or even drastically improved by good parenting alone. It requires intense medical intervention, preferably from a very young age, and that intervention is EXTREMELY difficult to get. It’s rare, it’s expensive, there are a lot of quacks out there who still haven’t learned about high-functioning autism and yet will try to treat you anyway and set you back further, and by the nature of the disorder it is very difficult for autistics to seek and coordinate care at that level. It’s not just like your parents never telling you not to talk with your mouth full, it’s like trying to permanently relocate to a foreign country where you don’t speak the language and no matter how long you spend there you CAN’T assimilate. It’s like trying to learn how to verbally pronounce words in a foreign language when you’re deaf and can’t hear what anyone is saying to you. Getting better than he is is the struggle of that man’s life and is something he is going to grapple with, painfully, for the duration of his life. Try not to judge him more than absolutely necessary. It’s not easy to be this way.</p>

46

<p>I feel that it’s kind of sad that this thread has gotten 44 posts without anyone really mentioning that the point is not how to “handle” this student or even necessarily to “help.” What does this student want from his RA? That should be the guiding question here. It’s great that the OP’s son is so concerned and involved, but this student may or may not want any of the various “helping” mechanisms that have been suggested here.</p>

<p>I am on the spectrum, now in graduate school. And I can tell you that I would have been mortified to have an RA show an autism-related movie for a movie night or anything like that. I also wouldn’t have been too thrilled about people who I don’t know very well knocking on my door in order to “draw me out” or whatever.</p>

<p>I did experience problems with residential life in college. You know what would have helped to alleviate them? Acceptance of my differences and a willingness on the part of some people to mind their own business, frankly. I don’t want to go into details here because it is painful for me, but my own experiences have led me to be skeptical of neurotypical students who only want to “help” the poor, weird, crazy/autistic person.</p>

<p>We have the right to self-determination. I am NOT saying that the OP’s son is doing anything wrong, but it would perhaps be beneficial to get the student’s perspective. Not reading in books (usually written by non-spectrum people), and not by talking to non-spectrum people online.</p>

<p>As for the implication that spectrum students shouldn’t even be living on campus because it’s too much of a burden for others…uh, wow. Nice to know that such blatant exclusionary attitudes still exist today.</p>

47

<p>sra08: I am sorry but yes you are saying that my S did something wrong. I do not know your circumstance so I cannot judge how you are feeling but the bitterness comes across. You quite possibly have every right to be but do not criticize someone that is trying to understand and help. You have basically said that my S should have walked away and waited for the boy to come to him. From what I understand that wasn’t going to happen. If you want to talk about being exclusionary (self-exclusionary) then that is it but then don’t complain because you feel treated differently. I will never turn my back on anyone because of an illness, disease, color, race or anything else and I guess my S feels the same way. I have never said or implied that my S or myself are ones “who only want to “help” the poor, weird, crazy/autistic person”.
I am sorry if I am jumping on you but you have hit a very sore spot with me.
ps I do agree that it would be mortifying to show a movie or even talk about it without the students full agreement and desire to share.</p>

48

<p>needsomeinfo, your S does sound like an amazing individual but isn’t your response to sra08 a case in point? He/she identifies themselves as on the spectrum and then tells you very directly how he/she feels. You feel as if your son is being criticized but this whole thread is about how people on the spectrum may say or do things that are offensive and how to learn that it isn’t necessary to feel offended IF YOU KNOW they are on the spectrum. sra08 is elucidating on the finer points of his/her feelings and I do not believe intended in any way to criticize. This same post from someone not on the spectrum could be taken that way, but not in this case.</p>

49

<p>I so agree with Emaheevul07’s post. It is extremely difficult to find a knowledgable therapist who will work with a young adult. I have read about several types of therapy that I have thought worth investigating for my son. I live in one of the largest metropolitan areas in the country and can’t find therapists with experience in those areas who work with adults. It’s very hard to find anyone who even works with teens…many only work with pre-schoolers. </p>

<p>

</p>

<p>I am guessing that because you are in grad school (meaning that you must have done very well in undergrad), you probably don’t have the Executive Function Disorder that often accompanies Asperger’s. My son has pretty severe EFD…he would totally be the type where everyone on the floor was going to an activity together and he wouldn’t know about it, or wouldn’t know when it was, or would be so absorbed in a book or video game that it would be time to leave and he wouldn’t budge. In that case, I think a friendly knock on the door (“hey, we’re all going to do X, do you want to come?”) wouldn’t be too much of an intrusion.</p>

50

<p>@sra08. Many posters stopped answering the OP question because in post #34 OP wrote:</p>

<p>“The Aspergers student told my S that he may be transferring out after the Columbus Day break.”</p>

<p>If you read OP’s posts she states that the student was happy to be included with the group to go skating. This particular student seemed to appreciate the concern and inclusion provided by OP’s son. Certainly, not all would.</p>

51

<p>I have a 47 year old brother with Asperger’s. He was diagnosed at age 37, when his son was diagnosed with autism. My parents had no clue about any of this. They simply understood that he was “sensitive” and “different” and tried to socialize him the way they did their other kids, by example, and by simply stating the rules. Kids with Aspergers do not learn this way, especially if the rules are not logical. I’m guessing that this is exactly what happened with your colleague. BTW, my brother is also a highly successful CFP/CPA. One of the traits that have made him so successful at making money for his clients is his refusal to allow for emotional considerations in financial decisions. At times, I think this makes him a total jerk (we’ve butted heads over our parents’ finances many times), but it does prevent foolishness if his clients are willing to follow his plan.</p>

<p>But in the case of a younger who is socialized well by parents who make themselves experts on Asperger’s, there are still many things those parents will miss, because teaching a child with Asperger’s isn’t simply a matter of learning their language and speaking it. It’s a complex neurological syndrome and there are some things that will never be “normal.”</p>

52

<p>As a speech pathologist, I am learning so much about community attitudes and challenges from this thread! I don’t know that I have ever read such honesty from a community - it gives me lots of ideas! </p>

<p>In terms of adult services, in my opinion the most positive way of effectively assisting adults would be a problem based group setting where each week a different challenge (e.g. asking a girl out, accepting “no” for an answer, etc) would be discussed. I would think that the speech pathologist (are you listening, THUMPER??) who starts an evening meeting schedule could really set up a wonderful community resource, which admitedly is not typically available. I live in a highly populated aera with a ton of autism services, and I would be stumped to come up with a single adult group if asked. Unfortunately, these groups are very tough to make successful due to the diversity in the community - you can’t just toss six adults with asperger’s in a room and expect the group to go smoothly: it is critical that you assess many factors that might overwhelm someone just trying to set up a “casual” group. You would almost need to run five or six groups so that you could screen each incoming adult, and pick the best “spot” for them. Great idea…in my next life…</p>

<p>In terms of learning new skills, yes, people with asperger’s can learn new skills. There are many social thinking books available, and students who are identified now are taught how to break down a task and sometimes even learn “scripts” to get through difficult situations. However, it comes back to the number of scripts one needs to get through an average day, or even an average event. Demands change, circumstances change, and an aspie can be completely caught off guard. </p>

<p>The overlying concept that we try to teach is taking the perspective of others. For example, let’s say a workmate is repeatedly asking a girl out on a date in front of others (a las the poster above). If were coaching that person, I would say “Let’s take the perspective of the girl. When she says “no” the third time, what is she thinking about you?” “How about Mike, who was sitting at your table when you were asking her repeatedly - what is he thinking about you?”" This perspective taking problem is at the heart of most social skill problems with adults with asperger’s. Once the aspie develops strategies for assessing other’s perspective, they can begin to generalize one “script” to another situation. </p>

<p>And there is your mini-inservice on Asperger’s for the day - worth what you paid for it :)</p>

53

<p>

</p>

<p>Some of the historical speculation on that list should, I think, be taken with a large grain of salt. Jane Austen? Really? Because of her well-known inability to pick up on social cues? Mark Twain? Washington, Jefferson, and Lincoln? I once saw an article arguing that Vladimir Nabokov had Aspergers because of his great interest in butterflies. I don’t see how that kind of speculation helps anyone, any more than the similar lists one sees of historical figures who may have been gay, when there’s no real evidence for it. (I notice that there are some names that commonly appear on both types of lists, like Lincoln and Michelangelo, although it seems pretty clear that Michelangelo was, in fact, gay. Nobody ever seems to put the famous “bad guys” of history on these lists.)</p>

54

<p>Both D1 and D2 have very mild AS. D2, now 14, has been in social thinking groups through an SLP since she was young. Have they helped? Yes. Have they “fixed” her? No. As she gets older the social rules constantly get more complicated. In addition, there is a huge difference between knowing in theory how to behave and how one behaves in the heat of the moment, espcially if there’s superimposed anxiety. No–therapy won’t “fix” an Aspiie–just allow him or her to act a litttle closer to neurotypical.</p>

55

<p>Agree with Sudsie - SLPs, kind friends, teachers, parents, girl scout leaders…alll works together to help aspies gain perspective on other’s thinking. And guess what - we still can’t keep up (see #52). Communication is a very complex thing - standing a couple inches nearer or farther, keeping eye contact a little more or less, smiling or not smiling, being assertive or keeping quiet…the rules are ever changing depending on zillions of factors. It’s enough to drive you crazy!</p>

56

<p>Simple Rules, I think the post by sra08 made valid points, and would certainly not view his feelings as some sort of symptom,as you seemed to be saying. I hope maybe you could read your post and explain if that is not the case.</p>

<p>I think sra08’s post should make people think about what it really means to “help”, in a way that respects the person being helped. Often, those who think they are being “sensitive” are the most offensive, because that need for sensitivity indicates that the person helping views the other person as needing it. This can apply to many situations: social work for instance.</p>

<p>Missypie, in our experience, every year is different in terms of how the dean, disability folks, teachers and student work together toward necessary accommodations. It can vary with personnel changes. It may be hard to get a real idea of how things work, before actually attending, though you may be able to get an idea.</p>

<p>A common thread at all the schools we have dealt with is that the student must take an active role. That means meeting with people, giving letters to professors, talking with them as much as is comfortable, and contacting the appropriate person when help is needed, such as an extension or excused absence. This can sometimes be a challenge for the student, depending on what he or she is dealing with. As parent, I did intervene and call a dean and/or disabilities person once each for two of my kids, when they were too ill to do it, and that was more than tolerated, despite their age being over 18. But getting a release sure does help.</p>

57

<p>I’m a graduate RD myself, and I’m a little bit mortified by this thread…first of all, I’m pretty sure that my top university would not communicate a disability to me for one of my residents. I oversee 5 buildings on campus; I can guarantee you that there are a few residents in those buildings with serious physical or mental disorders, disabilities, and/or differences. I don’t know what they are. I’m pretty sure it would be illegal for the school tell me.</p>

<p>But secondly, if I ever were to inadvertently come across some information about a student’s disability…I would not tell my RAs! That is not for me to do. That is for an individual student to decide if they wanted to disclose. I’m also not even 100% sure that it is legal for the school to be communicating this information to student staff. It makes me a bit suspicious.</p>

<p>Let me be clear: I don’t think the OP’s son did ANYTHING wrong. In fact, he did everything right - upon learning information that he could use to help a resident, he did all he could to help that resident. That’s what a good RA does! I’m side-eyeing the school.</p>

58

<p>compmom - I said, “sra08 is elucidating on the finer points of his/her feelings and I do not believe intended in any way to criticize.” </p>

<p>My point was that his/her feelings are totally valid but perhaps needsomeinfo didn’t need to take the post as an insult to her S as I was sure it was not intended to be an insult but rather an expansion of sra08’s point of view. </p>

<p>I thought sra08’s post was extremely interesting and not to be taken lightly.</p>

<p>What you said,
“I think sra08’s post should make people think about what it really means to “help”, in a way that respects the person being helped. Often, those who think they are being “sensitive” are the most offensive, because that need for sensitivity indicates that the person helping views the other person as needing it. This can apply to many situations: social work for instance.”

  • that is what I was trying to say but also did not want to insult OP’s son, who sounds like a truly great guy. </p>

<p>I wasn’t direct enough. Sorry you read it as the opposite of what I meant</p>

59

<p>Juilliet raises an extremely good point here. Colleges are extremely careful about confidentiality with disabilities (and anything else). The letters provided to students to give to professors concerning accommodations do not specify the disabilities, or say anything about them (though at one school, we recently found out the professors have access to a file with info; at another school, confidentiality is absolute and the professors only know what the student chooses to tell).</p>

<p>The original poster may be gone by now, and the thread is no longer relevant because the student with Asperger’s is leaving. But I am also curious how the son learned about the student’s Asperger’s. The fact that the RA knew more than he should, may be the basis for the problem with intrusiveness that sra08 alluded to.</p>

<p>Some schools have grad students as RA’s. I still think this son was in a difficult situation as a junior. Whether the school put him in the position of having too much responsibility, or he put himself there, something was really wrong with the picture. And Juillet may have put her finger on it: privacy was lacking for the student in question.</p>

60

<p>@Donnal. I agree with you on the historical figures listed. I’ve also heard speculation that Lincoln was manic depressive.</p>

<p>As for the school, it is possible the student was willing to disclose to the RD and RA.</p>