Whose Planet Is It Anyway?

Monday, November 27, 2006

The Depths of Higher Education

I am very thankful that I was able to get my education before American universities had any so-called Asperger's support services, back when it was still possible for an autistic student to be treated like a human being.

Take a look at this abominable news article (thanks to Lana for the link) entitled "Students on the Spectrum," with the barf-worthy subtitle, "A Dream Not Denied."


The article declares that colleges are "in a panic" about the enrollment of autistic youths as they "scramble to figure out how to accommodate this new, growing population of disabled students" more of whom allegedly are considering college as a result of "earlier and better intervention" and "intensive therapies." Many college administrators have been attending conferences about Asperger's support services, including one conference that was sponsored in part by the Yale Child Study Center:

The director of the center, Dr. Fred Volkmar, helped define autism and Asperger’s for the American Psychiatric Association in the early 90’s. "Twenty-five years ago," he says, "I would have been stunned to learn that I was going to put together a conference on colleges for these kids. Twenty-five years ago, the stereotype view was that they were not very bright and not college material."

I'm giving Dr. Fred Volkmar my Barefaced Liar of the Year Award for that one. You know how many children diagnosed with Asperger's were thought to be "not college material" because of stereotypes 25 years ago?

Zero. Zip. Zilch.

There weren't any children diagnosed with Asperger's 25 years ago. The concept of autism spectrum categories and the ugly stereotypes it spawned didn't exist (except in a few theoretical academic papers) until Volkmar and his cronies cooked them up in the early 90’s. Before then, most autistic high school students were considered to be normal, and those who attended college were admitted on the same basis as anyone else—high school grades and admissions test scores. And many of us got our degrees, found jobs, and got married or found romantic partners without benefit of the demeaning "services" that the article describes:

At Keene State College, in New Hampshire, fellow students act as "social navigators." Their assignment: change their charges’ "outsider" status by introducing them to their friends. The mentors get $10 an hour (and sometimes course credit in psychology) by helping students on the spectrum make small talk, date and get consent at every level of romantic advancement.

Yecch. Just how is a phony friendship with a paid-by-the-hour psychology student, who may be conducting research for a class project, supposed to make the "mentee" feel like anything other than a lab rat? And someone really needs to explain to those ding-dong psychologists that it's not the autistic guys who are committing date rape—most autistics are quietly studying on any given evening. Rather, it's the beer-chugging party-animal jerks who could use more "social navigators" in the form of probation officers teaching them how to behave around women.

But wait, it gets worse:

At Marshall University, the West Virginia Autism Training Center operates a program in which graduate students work daily with students with Asperger’s, reviewing assignments, helping with time management and teaching classroom etiquette. They take the students on field trips to Wal-Mart, to restaurants and to the movie theater to let them practice social skills. Bottom line for parents: $6,200 a year.

Field trips to Wal-Mart? WTF? Here's a little anecdote about how I learned to do my own shopping when I went away to college. While I was unpacking my clothes and linens in my dorm room, I noticed that I had forgotten to bring a pillow. So I asked my dad (who had driven me to the campus) if he would take me to a store. He informed me that I was living on my own now, that it was my responsibility to do my own shopping, and that he was quite sure I was capable of buying a pillow. Then he left. I sat there on my pillowless bed for a few minutes, sulking about the unfairness of life and parents, and then I went and got my bicycle from the rack and rode a few blocks to the nearest discount store. I bought a pillow (well, gee, it wasn't rocket science after all) and rode back to the dorm with the pillow balanced across my handlebars, which taught me a valuable lesson about planning ahead.

That's one of the best support services to help an autistic kid learn how to live independently: Parents who have the good sense to administer a few well-aimed kicks in the rear, figuratively speaking, when they're needed. Thanks Dad. (And he didn't have to pay $6,200 a year for it, either.)

To make myself clear on this point, I'm not denying that support services can be useful or that there should be more of them available on campus. I can think of many services I didn't have (or didn't take full advantage of) as a student that would've been helpful, such as testing to identify my areas of strength, career counseling to match my strengths and interests to suitable jobs, occasional meetings with an academic advisor to provide guidance with my class choices, and some general advice on time management and adjusting to independent life. But these services—which would also be helpful for many non-autistic students—can and should be provided in respectful ways that don't stigmatize the recipients as grossly incapable.

Some college officials, according to the article, have been wondering why more autistic students aren't seeking out their support services:

"The Asperger’s population is much bigger than we think it is," according to Larry Powell, manager of disability services at Carnegie Mellon. "But students aren’t disclosing that..."

Well, duh! Here's a teensy hint for you, Mr. Powell. It's not because Carnegie Mellon hasn't been offering enough field trips to Wal-Mart. Maybe you ought to take a closer look at how the folks on your campus have been treating students who disclose, such as Valerie Kaplan, a student featured in the article. Although she scored a perfect 1600 on her SAT, that didn't save her from being treated as some sort of tragic mental defective by a Carnegie Mellon professor who

encouraged her to explain her cognitive difficulties to her teammates and ask them to be direct about what they wanted her to do. Dr. Pausch says the results were beneficial not just to Miss Kaplan but to the others. "They found a way to work with someone who opened up to them about something that was very embarrassing," he says. "Once she puts that on the table, what else can anyone feel embarrassed about having to divulge?"

Guess what, dude, a lot of things are more embarrassing than the simple fact of belonging to a social minority group as a result of a natural genetic difference. Such as being a bigoted professor who sees nothing wrong with teaching a bright, capable student to feel ashamed and embarrassed about who she is. Or being an ignorant journalist who happily laps up vicious prejudice like that and presents it as a wonderful insight into social interaction.

To all the "autism aware" colleges and universities out there: Clean up your act. Show a decent respect for human differences. Educate your faculty and staff about neurodiversity, rather than "symptoms." Make it clear that you intend to strictly enforce your non-discrimination policy. Respond promptly and appropriately when you receive complaints of discrimination against autistic students. Replace degrading pseudo-services with genuinely useful ones. Maybe then your autistic students won't be afraid to come out of the closet.

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  • Oh my! College orientation was enough of a nightmare. I hate to think what it would have been like if I'd known then that I am on the spectrum, and was stupid enough to let it be known. with friends like those, who needs enemies?

    By Blogger Catana, at 1:32 PM  

  • "mentee" feel like anything other than a lab rat?" [translation = would that make the mentor a pimp?]

    By Blogger Maddy, at 2:59 PM  

  • I am struggling with this now, as I prepare to get an Associates Degree (despite working in a field that normally requires post-graduate education, I never managed to get a degree).

    The reality is the first time through college was bad. Not socially (I do get really sick of focus on the social aspect of autism at the expense of the other parts), as college was the best time for me socially in my life with the exception of a roommate that I freaked out.

    I had problems like not eating for a week because I didn't know where the cafeteria was and I couldn't ask anyone. Certainly some disability services, such as a disability office asking, "Would you like a tour of the campus?" would be helpful. The key is to *ask*, not force, services on people. And the only way they will know what services are needed is for us to say, "Uh, no, that won't work for me." So I think disclosure is important to these offices.

    I think of other things I could have used help with. Teamwork projects were a big problem - they had nothing to do with the class material, but were required to pass. So I flunked those classes - it was too stressful on me to participate. A foreign language exemption would have let me graduate (I took Spanish I three times before I just dropped out of college altogether - in my senior year).

    Of course I can't even ask for permission to use a pencil instead of a pen on a test (something that would give me no unfair advantage whatsoever over another student) without reams of 'current' documentation on my disability. That's the biggest problem with the system - we want proof for the most minor environmental modifications, which is absurd, a carry-over from the medical model, and dehumanizing (YOU don't know what you need, only your doctor does).

    I would urge anyone seeking disability support services to think about what they truly need, and go after that rather than a prepackaged program for autistics or whatever else. Too often we complain about services but then we don't know what the services should actually look like. If we don't know what we need, why would anyone else?

    By Anonymous Anonymous, at 3:42 PM  

  • What stupid ideas - field trips to Walmart would NOT have made it easier to attend college. It still seems that they are not interested in offering practical assistance for those who would need it - like just someone to assist in breaking down all the tasks that would seem overwhelming and discouraging - like setting up housing, enrollment, getting books, ect. Once the routine is set up and the person knows the procedures than probably most people on the spectrum could manage.

    I did have a college scholarship to an out of state university based on my test scores but did not go because I knew of no services and was not interested in contacting anyone and saying I had mental health issues(OCD, chronic depression - no AS label back then of course). The fact that I chose not to attend college was considered a "shame" by a few people but they really had no idea of what it would have entailed. I was happy though because the stress of trying to coordinate all that seemed impossible. At least the stigma part of this is going away but they are replacing it with tolerance (fake mentor friends)instead of understanding. How to make friends and field trips to stores are not something I see as important compared to really practical helps. And actually I could see that as a hindrance to attending college if you thought you were going ot be forced to socialize or have to "confess" your AS to everyone.


    By Anonymous Anonymous, at 4:21 PM  

  • Actually, I would've benefited from some supported way of getting to Wal-Mart, in the same way that I benefitted from someone teaching me how to get from my dorm to the dining hall. (Navigational problems are the most obvious part of my disability to other people).

    That said, I agree that the idea of "field trips" to Wal-Mart (or everything else this program is offering) is the wrong way to handle the problem. I was helped a LOT by having a psych intern (from another school) come by once a week and teach me how to get to different places around campus. (She taught me a lot of alternate routes, which came in handy if there was contruction and whatnot). The only "problem" was that she wasn't really trained in orientation/mobility type stuff, and could not have shown me how to, for instance, get to Wal-Mart or Target from campus. (My mom usually took me shopping).

    By Anonymous Anonymous, at 4:48 PM  

  • lots of work to do still for autistic students clearly.

    By Blogger kristina, at 6:07 PM  

  • Our 12-year old daughter with Aspgerger's just got student of the month. This was elected by the whole 7th grade student body and teacher's. Not too shabby, I think. We could not be more proud.

    By Blogger Mom26children, at 6:23 PM  

  • I went to University 30 years ago and screwed up.

    Never mind Asperger's there was dyslexia to contend with and a university that was not prepared to let me type my exams.

    It is only now I have got over all of that and have had the degree that I never achieved, acknowledged.

    You miss the point entirely about Universities then and universities now, because you are not looking at the larger disability picture. Back then any difference be it physical or mental that prevented you from doing things in the "normal" way meant you were out or you failed. Now we have laws that prevent discrimination in education. I consider that as something as a victory not to be dismissed lightly by this "good old days" crap.

    By Blogger Larry Arnold PhD FRSA, at 6:59 PM  

  • What is more your post is full of stereotypes about Asperger's high achievers with good high school grades as if the high school process did not discriminate. If one was not bullied by ones peers and victimised by ones teachers.

    There was a word for your attitude coined many years ago in the UK

    The original phrase is too rude for a blog, it was translated into "I'm all right jack"

    By Blogger Larry Arnold PhD FRSA, at 7:07 PM  

  • laurentius rex said -"Now we have laws that prevent discrimination in education. I consider that as something as a victory not to be dismissed lightly by this "good old days" crap."

    I agree that there are much more opportunities offered to level the playing field that have most likely made a big difference for alot of people. I made a very logical decision at the time not to go to college because it was not feasable in my opinion because of my issues. I just did not see how I would have managed everything without some sort of assistance - regardless of grades or intelligence. And honestly you just did not advertise this kind of stuff - which created more pressure and made things more difficult to try and fit in which could be almost impossible in a completely foreign setting.

    However - to replace help with condescention in terms of having social skills classes really would have embarrassed me as a young person. There also is really no basis for this incredible amount of "effort" they are trying to make this out to be to accomodate students. I imagine that it would have been a small investment in helping to set a program up or a practical guide for the college (and as someone else said telling you where Walmart is or offering a ride there - could be practical). But instead they are adding this to the autism epidemic of "how are we supposed to provide for all these people" like none ever attended college before or when in effect many could probably attend with minor accomodations - but ones that really help, not ones that THEY think you need.


    By Anonymous Anonymous, at 9:01 PM  

  • The best,most useful socialising I did in college was hanging out with a bunch of (probably autistic or cousin) kids who played D&D :) Those were the days.

    You're right, it's stupid to pay students to escort autistic students around like that--what a condescending, demeaning idea. Not to mention how are those autistic students going to feel if their paid 'friend' suddenly drops them when there's no more monetary gain in the interaction?

    Probably better to encourage those kids to find a social group or club for one of their hobbies and meet kids they can actually relate to in a more natural setting.

    Oh, yeah...and why not recruit upperclassmen autistic kids who know the ropes to help the new kids acclimate? That would probably be a positive thing for both parties instead of the one-sided set up you're writing about.

    My biggest problems in college were more life skills related, not social anyway. Some support in finding work or offers of help from counsellors in finding my way around would have been useful, as would sitting in front of the class, taking tests in a quiet environment, etc...practical stuff is what I needed most.

    Joel, I did the 'not eating' thing for a long time, too...same reason :)

    By Anonymous Anonymous, at 12:49 AM  

  • I got my degree back in the mid-1980s, and I think I was almost neurotypical compared to a few of my lecturers. I was studying one of those academic subjects that tends to be a magnet for aspies and systemizer geeks.

    I just can't get over this TOTALLY ABSURD idea that universities are a new environment for our social minority group (autistics). Autistics have been around FORVEVER, and universities have been aspie havens since Sir Isaac Newton set off to study in Cambridge.

    Cool blog you have here!

    By Blogger Lili Marlene, at 1:01 AM  

  • My biggest problems in college were more life skills related, not social anyway.

    Same here...I had a lot of trouble with things like remembering to eat, monitoring my health, etc. I also did have some academic problems, associated with sensory issues (the standard classroom environment, me, and tests do NOT mix well), and general cognitive stuff like not being able to produce results/answers at will. I felt horribly guilty a lot of the time, like somehow I must be subconsciously lazy because sometimes I could "do the work" whereas other times I could not.

    In short, though I am definitely good at some things (I used to draw really elaborate diagrams for my lab classes, for instance, that ended up being very useful) I don't think I could have made it through college without some kinds of accomodations. Getting extra time on tests (even though this didn't happen in all classes) was indispensible at times.

    Socially, I didn't really notice a whole lot in college in the first place -- I didn't wander around worrying about how many friends I did or didn't have and I had no desire to get into sororities or anything like that.

    By Blogger Zilari, at 1:21 AM  

  • Of course we existed in pre industrial society, class ridden pre industrial society where one might either follow a trade or be destitute or in the workhouse.

    That is where our history is, not with the bloody Newtons whose ilk pissed on the poor folk as much as anyone else who had the financial wherewithal for a University education.

    I am utterly sick of this geek/professor stereotyping it plays into the hands of the curebies by perpetuating the roles assigned to high funtioning non "disabled" autistics. It is actually part of the same disabling culture that creates the very things being complained about.

    I find it just as patronising to be stereotyped as a gifted geek as to be stereotyped as a social moron

    I don't give a damn about Wal Marts and that shit either, I do give a damn about getting appropriate support in academia, because I sure as hell did not get that in this mythical land of pre DSM perfection.

    I don't think University even was the best place for me when I was 18, it was part of a pressure system dictating what others thought I should be.

    By Blogger Larry Arnold PhD FRSA, at 11:26 AM  

  • Catana and LB: Yes, it would have been a nightmare to be forced to socialize or "confess." I wouldn't be at all surprised if some autistic students are having major anxiety issues as a result of such treatment, whereas they'd have coped with the social situation much better if they had been allowed to interact in whatever ways they found most comfortable.

    McEwen: I wish I'd thought of calling them pimps! LOL.

    Joel and Tera: I totally agree that flexibility in accommodations is much more useful than prepackaged programs. Being able to get what you actually need shouldn't be such an ordeal.

    Mom26children: Congrats to your daughter! I'm glad she is doing so well at her school!

    Larry: You seriously need to get that pickle out of your ass. When I see "Asperger's high achievers" being mistreated and exploited by bigots, I'm going to write about it, just as I would (and do) write about disability issues such as the abuse and murder of non-speaking autistics. If you don't like my choice of topics, nobody is forcing you to read my blog.

    Mum is Thinking: Yes, mentoring by autistic upperclassmen would indeed be worthwhile. Here's a link to The Autistic Self-Advocacy Network, a group that is trying to get a mentoring program going. Their program works with kids and teens, but it's the same idea, recruiting autistic volunteers as mentors.

    Lili Marlene: I see that you have a blog now, yay! You have quite an interesting collection of information there—I'll take more of a look at it later!

    Zilari: I didn't wander around worrying about how many friends I did or didn't have, either. Practical advice on things like how to choose courses would have been much more useful than extra socializing.

    Sethrenn/Julian^Amorpha: You're quite right that just because a stereotype may have some positive attributes (such as giftedness) doesn't mean that stereotyping people is the right thing to do, and it's also true that a positive stereotype can be (and often is) harmful. I'm working on a post about that issue.

    Joseph: Well said.

    By Blogger abfh, at 11:46 AM  

  • So thats what I get for daring to dissent from the Aspie party line is it?

    Cheap insults.

    I hope you have the good grace to let this through else I shall start getting really paranoid.

    My point was nothing to do with whether Universities are currently getting it right or wrong, but with the assertion that it was all fine in the past before the label.

    Well if you did not have an official label back then you sure as hell soon picked up an unofficial label as crazy, or drugged out.

    I can tell you it was very hard to be taken seriosly.

    By Blogger Larry Arnold PhD FRSA, at 4:18 PM  

  • You're the one who started the cheap insults by attacking my attitude, Larry. And your "Aspie party line" accusation is ridiculous.

    As for letting your comments through, I don't delete anybody's comments just for disagreeing with me.

    You missed the point of the post, though. I never claimed "that it was all fine in the past before the label." There was plenty of prejudice and misunderstanding in the past, too. That's not in dispute. My point was that nowadays there are many programs being marketed as "Asperger's support services" that are degrading and worse than useless.

    It is a fact that many of today's autistic students are hiding their diagnosis from university officials because they believe (often with good reason) that disclosure would do them more harm than good. Others are getting disability accommodations by being diagnosed as hyperactive or some other condition that carries less stigma than autism (that is, just about any other condition).

    This is a very sad state of affairs, and one that isn't likely to improve any time soon. The situation probably is worse in the US than it is in the UK, although I don't know enough about British universities to be certain.

    By Blogger abfh, at 5:56 PM  

  • Your interpretation of an insult is not the same as mine is it.

    I was making what I deem to be a legitimate criticism you accuse me of pickling my backside, I ask you which is a comment and which is an insult.

    To hold a different opinion and to make comparisons with a political movement is not an insult, to resort to bodily analogy is.

    By Blogger Larry Arnold PhD FRSA, at 6:02 PM  

  • Oh yeah failure to disclose in the UK is going to leave you nowhere if you want to pursue a legal case later.

    The argument being that one cannot be taken to be treating a disabled person less favourably if one has no way of knowing that person would fit within a legal description of disability for the purposes of the disability discrimination act, which was recently extended to education and higher education.

    I resort to the act as an ultimate threat if the Uni is not acknowledging some need or agreed accommodation that they ought to. I have used the threat of the act in the past in numerous situations and so far those who I have threatened have backed down without testing it it to the limit because what I have asked is not unreasonable.

    There is little point after one has been campaigning for many years for the introduction of such legislation if one then hides ones disability and negates the act.

    Yeah I have been treated like shit on account of revealing I am AS too, I was removed by security staff at one University I was considering studying at. However that Uni is the poorer for that as they don't get to spend my Uni fees do they, and the joke really is on them because I am using there library.

    By Blogger Larry Arnold PhD FRSA, at 6:12 PM  

  • OK, I'll withdraw the pickled backside insult—that was a bit on the nasty side.

    It is possible in the US to bring a discrimination case based on a perception of disability, whether or not the person actually fits the definition of disability. (But of course, someone's perceptions can be hard to prove.)

    You're quite right that disability legislation isn't much help when people are afraid to use it.

    By Blogger abfh, at 8:46 PM  

  • This is interesting.

    I'm not autistic, but I have a really obvious physical disability. Up until I was 18 and in college, I didn't have a choice about claiming disability status or not. Everyone took one look at me, knew I had a disability, and decided to provide the help they thought I needed. This included such kindness as being used as a prop by the widely despised vice-principal when some kid she regarded as troublesome said the word "spaz" in any context and she wanted to punish them. I also got obsessive efforts to correct my sloppy handwriting, and was offered the opportunity to not walk with my class for graduation, but sit on the stage by myself and wait for them to arrive.

    I didn't need any of this. The irony was I didn't need anything.

    So I got to college, and discovered that the office of disability services wanted a pile of paperwork and a doctor's note if they were going to give me any sort of accomodation. I was thrilled, because I finally had a hope of being left alone. Lack of accomodation didn't hurt me (I can manage stairs on crutches, and I scheduled my classes far enough apart I'd have time to get from building to builiding). So I sympathise with the college kids described. If a person can manage without the formal accomodation, that's usually the best thing.

    The horrible part, thought, is that is the choice. Either provide a ream of documentation, detailing what you can and can't do, and accept what someone else thinks you need, or get no help at all. I can manage with no help (although change the situation, erase a few of the built in "for everybody" accomodations and I'd be out of luck), but needing something that's not available for everyone shouldn't mean giving up that much control of your life.

    By Anonymous Anonymous, at 8:48 PM  

  • Anonymous: You're right, there are thousands of built in "for everybody" accommodations that people use every day, without even thinking about it. Different accommodations, when they're requested, ought to be provided as a simple matter of common sense and courtesy, rather than the bureaucratic nightmare we have now.

    Rachy: Thanks for the kind words, and you may be right that a psychology student who wanted some extra pizza money was to blame, LOL.

    By Blogger abfh, at 12:34 PM  

  • I am a grad student studying adult and higher education with specialization in student affairs and higher education (aka college student affairs) with the hopes of being a college student affairs professional.

    I am receiving services from the disability support service office, including the use of my laptop in class for taking notes (as my handwriting can be hard to read at times), and other academic accommodations. Most of them I requested while a few were suggested by my coordinator, including the non-academic one of having a single room.

    As for getting to Walmart, in both my undergrad and grad years, I just find a bus schedule to find out which bus goes to Walmart at which time and got on it. (I have a license, not a car.)

    By the way, in one of my classes, I am doing a research paper on disabilities and higher education.

    By Anonymous Anonymous, at 6:17 AM  

  • Oh no! Am I going to face this BS when I go off next year? I hope they do not require me to do so. At least I have an aspie friend who is going to the same school as me, and then we could perhaps advocate against it together.

    I heard of this whole "peer buddy" model in Bryna Siegal's "Helping Children with Autism Learn." Replace "learn" with "suck it up." That is what is is really all about.

    My favorite quote from her stupid book: "Another adolescent might tuck his pant legs into his socks for biking, but not see the point in removing them between bike rides. These little things make an adolescent or young adult with autism appear unnecessarily peculiar. A peer life-skills coach such as a junior college-aged peer buddy can help with undoing these oddities." Before that, she was talking about smelly clothing, which I can understand, since it is more about consideration than appearing typical.

    By Blogger Unknown, at 7:58 PM  

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