The first generation of students with an autism diagnosis is fanning out to schools across the country. They face a complex array of academic and social challenges.
http://www.nytimes.com/2016/11/20/health/autism-spectrum-college.html
Wait what? People with autism, even an official diagnosis, have been going to college for decades.
And even if we want to talk about the first generation of those born in the early 90s, those people are already graduating and graduated.
I’m very familiar with the Eastern Mich program. To say it’s problematic would be an immense understatement.
@romanigypsyeyes, can you share more? I have some clients on the spectrum who are considering these programs.
I found the article to be discouraging, and unhelpful for parents of the type of autistic spectrum students who would be likely to succeed in a college environment. Personally, I have a hard time comprehending how kids with extreme behaviors like head banging and who lack basic life skills like paying for purchases on their own are going to manage at college. I would have liked more advice for the mostly functional autistic student, such as information about the range of academic executive function support programs.
I agree that this is not the first generation attending college. But, our personal experience with our son is that even individuals on the spectrum without the extreme behaviors that make their disability obvious and are high functioning in general still struggle with employment even if they do not struggle with academics.
An incredibly high percentage of Aspies/high functioning autistics are unemployed or underemployed. (We have worked with the Dept of Reh Services in 2 states. Both have told us that they have a large number of Aspies with college degrees (some multiple) who struggle with employment. Many are not able to maintain employment or are like our ds, severely underemployed.)
http://www.npr.org/sections/health-shots/2015/04/21/401243060/young-adults-with-autism-more-likely-to-be-unemployed-isolated
http://asperger-employment.org/wp-content/uploads/2011/04/ASTEP-Article-ASN-Fall-2011-1.pdf
http://www.thinkingautismguide.com/2012/12/over-educated-under-employed-plight-of.html (a personal POV)
I think the OP’s article chose to focus on KAP at WKU b/c it is one of the most comprehensive programs out there. When our 24 yr old was a sr in high school, it was one we wished we could have afforded. Here is a link for some other college programs. http://www.collegeautismspectrum.com/collegeprograms.html For parents interested in these programs, I would want to understand the supports offered for transitioning to employment.
Hanna, I urge your clients and their parents to assess the student’s capabilities and deficiencies in a clear-eyed manner. Autism manifests itself in different ways. Two relevant ways are social functioning and executive functioning.
A lot of the autism programs emphasize social deficits, where the student is oblivious to social cues, often even as they wish they could blend in. Students who have social deficits but not executive functioning problems can often get through college with not that much support. They might be regarded as weird, they might not have any friends, but they can get through.
Then there’s executive functioning. A person with executive function disorder has difficulty planning, prioritizing, scheduling, seeing the forest for the trees, motivating themselves. They can be very bright, but they have extreme difficulty getting things done. They may have been very successful indeed in high school, where their parents were all over them with scheduling, reminders, nagging, and organizational help. They will sink without a trace in college without those supports, and will probably struggle mightily even with a lot of support. College expects a student to be a self-starter who can plan and organize their academics and the rest of their life; students with executive function disorder are the exact opposite.
It’s easy for parents to delude themselves that their student will mature when they get to college, or that their raw brainpower will be enough. With executive function disorder, these hopes are likely to be in vain.
I advise parents not to believe what a college tells them about the support the college will offer. Talk to other parents of students in the program. Make sure to talk to parents whose kids are at a similar level of disability. Find out how many students in the program don’t make it through. Try to talk to a parent of a student who didn’t make it.
@“Cardinal Fang” I agree with those 2 categories, but in reality I suspect that generalizing to just 2 categories is probably too limiting. The multiple comorbid conditions that often accompany a spectrum diagnosis can cause just as many problems as social and EF deficits. (In addition to our ds’s social and EF deficits, our ds’s most debilitating concern is anxiety.)
The entire range of deficits can make generalizations difficult. The assumption that is hardest to face is that high functioning autistics are not going to impacted as adults. Unfortunately, we know far too many adult autistics where their adult lives are severely impacted even though their level of functioning is very high.
I have zero answers. I wish I did. Our ds is really struggling emotionally right now b/c he feels like his life is stagnating and his siblings’ lives are moving forward. It breaks my heart, but at this point, I don’t see any good, realistic solutions.
Agreed, Mom2aphysicsgeek. Parents of a kid on the spectrum who is thinking of college must be brutally honest with themselves about their child’s deficits. They must examine exactly what supports they are offering their child, and what supports their child’s school is offering them. How will their child’s needs be met in college?
When I was in that position, I foolishly believed parents who talked about jumps in maturity, and how a kid will rise to the challenge. I wanted to believe those parents, and so I did. Several colleges along the way, colleges I paid a lot of money to, also fed me the same line, and I swallowed it.
Parents of autistic kids-- don’t listen to that happy talk. Be honest with yourself about your child. You’ll save a lot of heartbreak. Your child is not going to magically be able to do in college things he couldn’t do as a high school student. Colleges are not going to offer all the support they say they will offer, even if you pay them extra to do it.
I just heard from a friend whose child is flunking out of the University of Denver, despite being enrolled in their special extra cost Learning Effectiveness Program. I hear these stories over and over.
Another thing to bear in mind is that even at a school with a fantastic Disability Services program, the assistance is only as good as your child actually taking advantage of it. No one is going to go retrieve your kid when they’re floundering and say, “Hey, do you need some help?” A kid who can’t advocate for themselves (autistic or not) is going to have a hard time in college, period.
The boards here are rife with talk about “good fit.” I agree with @“Cardinal Fang” that the best way to proceed is with real honesty about where your kid’s strengths and weaknesses lie. That may mean not going away to college right away, even if they’re plenty smart, if they don’t possess the life skills/self-control/executive functioning to succeed mostly on their own. Or it may mean a special program like the one discussed in the article, but with the understanding that it’s not going to be any sort of magic bullet. Even kids who are neurotypical struggle when they leave home for the first time. Those on the spectrum are going to experience those ups and downs more intensely, bounce back more slowly, and be more easily thrown off course.
@“Cardinal Fang” Absolutely agree.
If a parent of younger child has never been to a support group for parents of adult autistics, I recommend trying to find one to attend. It might be overwhelming, but those parents are going to be a source of great information for you. I will never forget my first encounter with those parents. They talked about their adults with multiple degrees living in their basements playing video games all day or flunking out of college and living at home without direction. It was incredibly overwhelming. I was one of those parents who didn’t want to believe it would happen to my ds.
And now…I am thankful he has full-time employment at Goodwill.
Saying this to a parent of a kid with executive function problems is rather like saying the wheelchair ramp only works for people who can walk up the stairs. If a student’s problem is that they are catastrophically disorganized, then requiring them to organize their disability support is the same as saying your support for their disability is effective only if they don’t have the disability.
You may say that students with executive function disorder just don’t belong in college. But don’t say that you offer support for their disability, if that support is contingent on their doing something they are unable to do.
My friend’s daughter didn’t do well at a school 2000 miles away. She is an excellent student, but has to live at home for it to work as she needs a lot of structure to her day, and most schools just don’t want to be that restrictive with their students (dorms, meal times, class schedules, changes to schedules for weather or illness of a professor,noise levels). Luckily, they live in a city with several schools to choose from, and she’s able to take public transportation to school. It really took an adjustment to the parents’ expectations and dreams, but now everyone is happier with the second school.
“No one is going to go retrieve your kid when they’re floundering and say, “Hey, do you need some help?””
Some of the programs claim that they do set up a structure for this. Kid has to come in X times per week, and if they don’t show, then the advisors call/text, etc. Kids can still ignore the prompting if they want to.
I don’t have many alumni of these programs yet, so I don’t have evidence for most about whether they do what they claim to do. I have one parent whose child found fabulous success at Landmark.
“Your child is not going to magically be able to do in college things he couldn’t do as a high school student.”
This is a great principle across the board, not just for kids with ASD. I need to see success with smaller, easier tasks before I predict success with bigger, tougher ones.
“Some of the programs claim that they do set up a structure for this. Kid has to come in X times per week, and if they don’t show, then the advisors call/text, etc. Kids can still ignore the prompting if they want to.” Well, yes, and this speaks to @“Cardinal Fang” 's comment above as well. I happen to have a two kids with executive functioning issues attending colleges with “great” disability services departments (okay, one lauded as great, one as “pretty good”), and it’s still up to my kids to set those appointments and get to them if they want the extra help. I understand the conundrum inherent in asking the chronically disorganized to organize their own help on a very personal level, trust me. But again, this comes back to fit and honesty: a clear assessment of what your particular child can handle vs. what’s offered is the only way to know what will work.
My favorite autism saying is that “if you’ve met one person with autism, you’ve met one person with autism.” There’s never going to be a one-size-fits-all solution, for college or anything else. One of my kids will ask for help immediately, one won’t ask until it’s too late. Different personalities, different needs, different tolerances, etc. One was well-served by opting for a small college after high school and the other is currently dual-enrolled at our state’s flagship university, offering us all the “training wheels” experience of real college while still living at home and having assistance from us if needed. Both have surprised us in different ways, both with triumphs and trip-ups. At the end of the day, I think it’s our job to help them figure out what they can manage, and I guess I think it’s counterproductive to be angry at most schools for not offering more support.
I don’t think it’s like saying the wheelchair ramp is only for people who can walk; I think it’s like saying “we have a wheelchair ramp and if you can’t get yourself to the base of the ramp for some reason, we need to figure out if we can help you get there or if this is simply not the right place/time for you.”
The dilemma is sometimes that the high functioning student on the spectrum sees themselves and their potential differently than what the objective facts tend to show, considering the challenges with executive functioning and basic challenges such as prioritizing laundry washing when on their own at a university. Once they are an adult and several years out from high school it is very difficult for a parent to tell them they can or can’t do things like attend the university, even if their attendance is rife with challenge. When the goal and hope is for them to eventually become self supporting, its very hard for a parent to simply conclude that they will probably fail and not try to support their attempt to keep trying, even if it prolongs their college years substantially and even if the child seems somewhat objectively unrealistic. It is very hard on the parents to know what is the right thing to do at any particular point in time. Particular when even non-spectrum students can flounder for years.
I think everyone agrees that the goal of raising children is for them to become independent and self supporting. That does not necessarily mean college is the answer. I think it’s great that some of the directional colleges and others can staff up to support a high functioning autistic. I would hope that the majority of parents of autistic kids have a pretty good idea if their young adult can go to a nearby or even sleep away college and function with the additional existing supports at that college. Supporting efforts to “keep trying” is all good, but the purpose of college is not to teach kids to be self supporting. I think YankeeinGA has some good points. Every situation is different, but if you can’t wheel the chair to the bottom of the ramp…I agree it’s not the right time and place.
You don’t have any kids with disabilities, do you, motb? If you did, or if you knew other parents with kids with disabilities, you might realize that some of us know our kids will never be independent and self-supporting.
Moreover, even if our goal is to have our kids independent and self-supporting, we nevertheless don’t necessarily advocate that they try to support themselves as soon as possible. And neither do you. If you did, you wouldn’t have sent your kids to college. Instead, you would have sent them out to get jobs right after high school. But they went to college. Why was that? Evidently because you thought, probably correctly, that they’d have a better life if they had a college education. That is what parents of some kids on the spectrum think too.
It depends on where they are on the spectrum scale and what exactly their deficits are, and also, their own wishes and desires need to be taken into account, as well as the ability of the family to support from a distance. It’s a constant evolving process just as it is with a non-spectrum student. A spectrum student at 24 is not the same person they were at 18 or 16 in many ways.
@corpuschristi I agree. Our 24 yr old is quite different than when he was a teenager. He is higher functioning in some ways, but lower functioning in others. Adulthood has actually emphasized many of his deficits.
If I could go back and talk to myself when ds was younger, I would tell myself to not get upset when ds’s therapist said, “All of the academics in the world won’t matter if he can’t hold a job.” That comment infuriated me at the time b/c ds was an excellent student. But I was blind to just how much he was impacted in the ways that matter when it comes to holding a job. It is great that many universities are stepping forward to offer students supports. Great. BUT, employers are not under the same sort of obligation and working and school are not totally equivalent skills…
@Mom2aphysicsgeek ours is the same age as yours. He is still progressing through college.