college or university for moderately severe autistics

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Hello Planet,

First, please forgive me if I inadvertently use any language or terms that you find offensive (such as "autistics" in the subject line - I think that's OK but not sure?). I am open to changing, so please do let me know if anything I say is offensive.

Second, I am posting here because I am a father of a 6-year-old son with autism. His diagnosis is PDD-NOS, moderately severe, and he is approximately at age 3 developmentally. There are many things he does better than a 3-year-old (for example he's been potty trained for several years now), but overall he is quite affected. He is obsessed with order and routine, he perseverates over books and activities for months at a time, and his language in particular is extremely delayed; he is very echolalic and cannot at this point actually hold a conversation beyond telling you his name and how old he is. If you ask him how he's feeling he will say "I feel happy" but that's a rote response. However I truly believe he is "all there," in the sense that I think he is aware of what goes on around him and what is said to him, and I believe he understands most, if not all, of it. One look in his eyes (yes he has good eye contact) would tell you that he is intelligent. Also he is doing very well in ABA therapy, mastering new tasks one after another, which further convinces me that he is intelligent. Anyway to give a truly complete picture of him I would need to write a few pages, but I wouldn't ask you to read that much and I'm hoping that some of these descriptors will give you already well-informed folks an idea of what he is like and what his abilities (and lack thereof) are.

So ... my question for you is ... do you think that attending college is a possibility for a person with moderately severe autism like my son? I teach college, and I have a dream for my son to get a college degree. I'm hoping he will be ready to try in his early to mid 20's. I've researched a few existing programs geared toward making college tenable for students with Asperger's, but my son's diagnosis is not that. So I am thinking about starting a program of my own, for students who would be more like my son.

If any of you have thoughts to share on this, I would very much appreciate hearing from you. In particular I would like to hear from autistic members of this website who have been to college (whether you obtained a degree yet or not). In addition to your thoughts on whether or not college is a possibility for someone like my son, I'm looking for things like, what would have made it easier for you to learn? what supports did you have vs. what supports would you have liked to have? were there particular devices and/or materials that really reached you (or really didn't reach you)? That kind of thing.

OK, I've typed more than enough already. If you've read my entire post, I thank you, and I welcome any thoughts you may have.

Best regards,
Prof. G.

Well, my immediate thought? Is that you can't judge that far into your son's future based on his behaviour at six years old. People change. But for what it's worth, I have heard of people with more 'severe' cognitive disabilities (of varying stripes, not just autism) completing college, university, etc. I've also heard of (and am) much less disabled people who cannot (I'm bordering on NT intellectually and emotionally but with a f*ckload of executive functioning issues and no short-term memory worth speaking of). It very much depends on the person; wait and see which category he will belong to instead of mapping out his future for him so soon.

I've been diagnosed with autism. It took me extra long 5 years plus every summer. I'm kinda strangled in debt and hit a wall when I hit the work place. I didn't get along well with others so I lived alone which also costs more but was safer. Currently trying to work with DARS to get a job though. My grade point wasn't that great either, and the jobs I've had I've been losing.

I do have a learning disability as far as processing as well. I didn't have the supports I needed really. A couple wonderful prof's worked with me though and I did have a counsellor, that would occasionally talk to my prof's and help me schedule things.

One thing that helped me a lot was extended time to work on projects, as well as in some cases I was given a different assignment. For example something of more interest, like the history of the nuclear effects after Hiroshima and Nagasaki.

Lectures really did nothing for me as I could not learn that way plus the noise and florescent lights bothered me(I skipped a lot of class). Notes provided were very nice and would have been handy to have a note taker if not because I could not keep up. A major thing that I wish I had was more time to take tests, as often I would be the last one left and never finish.

I also didn't know at the time I was a kinesthetic learner which would have helped make tutoring actually work possibly. I failed calculus 5 times.

I did have speech delays as well(I was made fun of this in the dorm a big reason I moved out) My opinion would be to go ahead and help save for college, because with age people often become better or better at adapting. I think the sign of him liking books is a good start though personally as even if he may get overwhelmed by other stuff it is an effective way of learning. I read/skimmed a lot of stuff since I got nothing practically out of the lectures.

I have read your post, and have been there as a parent fourteen years ago. Son was diagnosed with PDD-NOS, and I think he was considered moderate ... but PDD-NOS is a "moderate" diagnosis when compared to an autism diagnosis, or at least that is what I was told...

We are now at the stage where we are preparing our son (who we were not sure would EVER go to college) for college, and I'm sure that he will get in. He may not get in to the most prestigious college, but he will get in to a college, and hopefully one that will prepare him for grad school. Our viewpoint has always been that he was definitely a smart kid, and he could be successful if we could teach him how to adapt to the other problems he has that are sensory, or behavioral, etc.

None of this has been easy. But I'm hoping that in a few years I can tell other people in your situation that it's worth it.

We did ABA, like you. I felt like that was beneficial. We didn't do that for very long (only until he started first grade) -- not sure whether or not it was a good idea to have stopped at that point. Through elementary school he had a speech therapist that worked on pragmatic language and social skills, and that basically did what I felt ABA would do -- and this kind of support was highly beneficial.

I can tell you that, for sure, your son will improve and change radically. Our son was the typical PDD-NOS kid who was echolaic, who rocked back and forth, who didn't point at things for shared interest with others, and unlike your son, who didn't have good eye contact. Throughout elementary school, he seemed to be a "fair" student. Especially, in math, he struggled a bit. Then, he shifted in to middle school, and we noticed that he could do more. He was excelling in certain topics, oddly enough, especially in math.

Fast forward to now. He is struggling in math, but he's in an honors calculus course. His teacher is new and inexperienced, and frankly, not a good math teacher. But he's going to do fine. He's using Khan Academy to teach him the things the teacher doesn't teach in class. He's also in an Honors Environmental Studies course, and an Honors Foreign Policy course. He still struggles, don't get me wrong. We are working hard to figure out solutions to executive dysfunction problems, but we're hoping that it's not an overwhelming problem.

There are colleges out there that work with the learning disabled. Landmark College is one of those, in Putney, Vermont. Marshall University in West Virginia is another. There are also colleges that have support programs, such as CLE or AHEADD, that are quite expensive support programs that you pay on top of college, but I've read that they are often successful in developing the student socially and academically. My son is, instead, choosing small LAC's to apply to, that will have some disability support, but more important to him is smaller classroom sizes and a good science program.

Thinking ahead to your son's future is a necessary thing, and thinking about starting a college -- this is not a bad idea. But your son may adapt quite a bit in the next few years, and he may be able to attend a college that is currently out there. He may need supports such as preferential seating, more time on tests and projects, class notes directly from the professor or a notetaker in class with him, and support from on-campus writing and research programs (usually part of the library). If he needs scheduling and social help, that can be provided by an add-on support group like CLE or AHEADD. All of this is doable -- it just may not be exactly what we had in mind when we found out or child's initial diagnosis. We figure that our son will have to take five years to get through college too -- he may have to take fewer classes. By the time your son is ready for college, there will probably be much more available to him than there is currently.

I'm in the moderate range, I think, and I'm in college. I'm also gifted, so that's a point in my favor--it takes me less effort to learn something than it does for a neurotypical, which is probably why I can go to college despite the fact that my disability causes some significant impairment.

By the way, "Autistics" is just fine. Some people insist on person-first language ("people with autism"), but around here nobody minds. I--and quite a few others--don't like person-first language because of how painfully polite it sounds, as though autism is so shameful that I have to be distanced from it, that you have to tiptoe around it and pretend it's not there. But disability is not shameful; it's my everyday normal. I don't call myself a "person with femaleness" because "woman" implies "person". "Autistic" also implies "person". I guess, if you were to talk to somebody who wanted you to use person-first language, use it because they'd be offended... but around here, nobody's going to be offended. We're autistic; that's that. Some people prefer "Aspie" for the specific type of autism they have, but we're all autistic.

Anyways, back to the college thing. I'm thirty and I don't yet have my undergraduate degree. I have some problems with independent living skills; didn't learn to clean a room until fourteen, couldn't remember to take regular showers until twenty. Still need help with bills, housing, paperwork, some of the more complex interpersonal interactions. I get a lot of help at college. I go to Wright State University, which is pretty good about accommodations for disabled students. It's not uncommon to be in class with someone who has an obviously severe disability--power chair, communication device, often an aide or service dog. And they're just as much competition for the high grades as any other student, though it always takes them longer to do things. We take tests at the disability services testing center. I just get a private room (with camera to prevent cheating, obviously), and extended time, extra paper to work out problems on, and a computer to type essays on so I don't get writer's cramp (my fingers are too flexible which means I grab the pencil too hard... writing a page is painful... minor problem but can get on your nerves during an essay test). Other students may get an aide to read or write for them; they also have machines to magnify text or convert it into Braille. They don't give you any breaks--you still have to do the learning--but you get to do it in a way that works for you instead of having to do it the normal way. Some students who use disability services have pretty mild things, comparatively--ADHD is the most common, along with specific learning disabilities like dyslexia. But sometimes even if you only need a little help, you'll still crash without it.

So yeah, he's six, but if he wants to go to college and he has the ability to learn, he'll probably be able to do it. Schools like WSU, with good disability assistance programs, do exist; and if he needs that level of assistance, then finding one of them shouldn't be too hard. He may not want to go to college, but if he does, I don't see a problem.

By the way: PDD-NOS is not moderate, mild, or severe. It's just "miscellaneous". The "NOS" stands for "not otherwise specified", so essentially PDD-NOS is just a way to say "autism, but with no specific type". It can be anywhere from barely-there to extreme.

Thank you VERY MUCH to all who responded! I highly appreciate your sharing your experiences and advice. I'll do a more detailed post in a few hours, but for now just wanted to say thanks - THANKS!

Not trying to self-promote - but I've kind of devoted myself to answering your exact questions in the form of websites.

Explains autism in general:
http://autismspectrumexplained.com/

Explains autism and college:
http://autismandu.weebly.com/

Disclaimer in advance - the latter website I haven't worked on as much lately, so it still has some flaws. The first website, I think the Introduction page (1) could really use some work, so try not to judge it by that page (skip it, if you want).

Parents of newly diagnosed children tend to find the first one useful. I'd actually recommend that one more than the college one, because it seems this is coming not from a college standpoint but a "will my child be successful and happy?" standpoint, and I think that's better answered by the autism spectrum explained website.

Kids with autism are just like any other kids - they grow and change. Just the same as it's hard to predict what a neurotypical six year old will turn out like, it's hard to predict what an autistic six year old will turn out like. Don't let any person (no matter their seeming authority on the matter), website, or book convince you otherwise. Lots of people will (and probably have) try to tell you how your child will turn out just because of the autism label, but you really can't do that. People told us my sister (who has Asperger's) wouldn't be able would never go to a normal school, never keep up with the other children, never read, never write an essay, never pass an Honors class, never pass an AP class, never have friends, never go to a university, never be able to live away from home - and she's done every last one of those things (and is doing great in college, btw). Attempts to generalize a child's future based on a label rarely end well and I would highly recommend not even trying to do so.

When you're done with the website, feel free to PM me on here, or use the contact form on either of the websites to get in touch with me. I'd be happy to talk, answer questions, etc.

A perhaps unrelated question, have you tried teaching him sign language and seeing how it goes?

I had moderate to severe autistic traits when I was six years old, e.g. lack of social, low communication, low language, no conversation, and super rigid, but I was super good at learning things like tasks and academics, and I grew up to go to prestigious university and graduate in four years, so your hopes for your son should be high, and your son's hopes for himself should be high.

At your son's age, an important informative measure is non-verbal intelligence, because if your son has above average or high non-verbal intelligence, then he has good chance of gaining fluent speech and good enough communication and social skills with your help.

OK, finally have some time to post again. I'll try to address most everything that has been posted here. First, though - again, I truly appreciate everyone's thoughtful comments.

To those (@sanahasacat, @schleppenheimer, @btbnnyr, @BigSister) who have pointed out that my son is still quite young and shows a lot of promise so I shouldn't assume what he will/won't be capable of - absolutely, no question. I didn't mean to come across like such a newbie, and I do not place a priori limitations on him. My son is not newly diagnosed (he has been delayed in reaching milestones since age 1 and was given his first diagnosis of Global Developmental Delay at age 20 months). Since 18 months he has been receiving early intervention, OT, speech therapy, and now, special ed services in school. He has only recently started ABA therapy though, and it does seem to be bringing him out of his shell and closer to realizing his potential. @Aardvark - sign language was a mixed bag for my son - he learned a few signs early on but because he was always at least somewhat verbal (albeit echolalic) we focused on verbal communication. I have read extensively, watched documentaries, and had countless discussions with others on autism, and I do realize that the spectrum of conditions in childhood results in a spectrum of conditions in adulthood. It's wonderful and heartening to hear from people who have been there first-hand that it is possible that my son will learn to communicate and socilaize to the point where he will be able to attend regular college someday. But I am mindful that he also may not. In either case, I strongly feel that he (and countless other young autistics who have higher education aspirations) may benefit from a change in college curriculum and teaching approach, rather than (or perhaps in addition to) trying to navigate the system in its current form. Thanks especially to @silentlyvela and @Callista for your insights and suggestions on this.

Finally, @BigSister - wow! Your websites are fantastic, thank you for sharing them! Admittedly I've only had time to skim them so far, but obviously there is a lot of great information there. Once I have a chance to take a closer look, I will definitely take you up on your offer to communicate directly on this.

Meanwhile, those of you with first-hand experience - please keep the suggestions and insights coming! If this idea of mine is to come to fruition in some form, I will be relying primarily on advice from people like you, the ones who truly know, to help guide it.

Thanks again, all!
-Prof. G.

My honest opinion.

There is really NOTHING stopping your son from being able to go to college/university and doing well. He will have to learn to adapt to issues presented by his condition because the school can only do so much to adapt to his needs.

The bigger question is IF your should should go to college/university.

Learning for the sake of learning is only sensible if you can afford to pay your way. If he has to finance his education, he will need a darn good job upon graduation, and that's not happening for able-bodied people who receive very good grades in school.

So, if he wants to be self-sufficient, a trade school or community college program might be better for him...giving him a marketable skill without the nightmare of debt.

Give him an Ipad. Or, I shouldn't assume he doesn't have one, does he have one? I know loads of people, on spectrum and otherwise, who interface better using computers. I do. And I'm finishing my Biochem degree after earning a Culinary Arts degree (cooking professionally right now). Not only was I undiagnosed until last year, I am also considered moderate to severe-- I've just adapted, I sort of pass, but not really, never will, but I'm incredibly smart (not trying to be immodest, it's fact, 138 IQ, 129 verbal).

So if your son is smart, he will adapt, he will capitalize on his strengths. Verbal communication, AH so prized in this world!, is not the end-all-be-all of a sign of intelligence. Some of the concepts in philosophy that I can comprehend and explain plain flip people out. Anyway, I digress. Autism is a different ability. I'm so glad you came here for guidance, you will come to know that there are just so many possibilities (perhaps you already know).

I'm curious what your son is interested in? What fascinates him? If you can explore these attractors, you can find out what type of thinking pattern he has and teach him through it; I read you are doing ABA I wonder if that helps with that, or if being a professor of course you are already well-versed in teaching styles but some profs I've had insist on following tradition rather than adapting so I did well in classes with kinetic stimulation (Acing labs but getting Cs or Bs in lecture). Some people with autism have such poor proprioception that they need sensory integration therapy in addition to whatever else they get.

I have to assume to much to answer thoroughly with what I thought, so I do apologize, I also hope this helped.

I was moderately autistic as a toddler and am now a medical student.

Anything is possible. Honestly. Just watch Temple Grandin. She is apparently a classic autist and though it was hard, she made it through graduate school and got a PhD.

Never lose hope.