From the newsletter:
If there’s a good kind of autism to have, Ian has it. His IQ for nonverbal tasks, like pattern recognition and visual spacial reasons, is off the charts. He taught himself to read at age three, looked at the multiplication tables once and just knew them, and is an excellent computer programmer. The good news is that jobs in technology fields are plentiful and well compensated. In addition, as 60 Minutes reported last year, more and more large companies recognize the benefits of a neurodiverse workforce and have created modified workplaces, which include new interview techniques and sensory-safe offices.
Ian can absolutely do one of those jobs in the future. That’s the goal. But how we do we get him there? I can’t just plop in a regular college like his older brother. He couldn’t manage the social expectations of a dorm or a traditional classroom. Most college professors do not appreciate being interrupted by a student who corrects their usage of apostrophes. Without basic independent living skills – like crossing a busy city street – Ian could not live without assistance in a college dorm.
So, how do I get Ian from Point A to Point Z, from now to job? There are multiple things that I’m working on simultaneously. He is attending a town 18-21 program, where he is learning social rules like: “no one appreciates having their grammar corrected.” A private therapist is working with Ian to lessen some of his OCD tics. Because he needs some formal training in computer programming — a piece of paper to take to future employers to certify his skills — I’m slowly acclimating him to college life.
Between my professor jobs, my undergrad, and grad schools, I have direct experience with about a dozen colleges. My husband and my father are PhDs. My dad used to take me to his college, back when I was in elementary school. My brother and sister both have BAs and MAs. As part of my job as an education writer, I have talked with hundreds of college professionals over the years. I know how colleges work.
However, prior to this spring, when I started the community college admissions process for Ian, I had limited experience with community colleges. I wrote a couple of articles that touched on those 2-year schools, but I never worked on those campuses and got the full experience. So, this spring was a crash course.
Poorly trained administration, compounded by limited work hours due to COVID, meant that it took me months and months just to sign up Ian for one non-matriculated class at the college. It was impossible to get this done on their website or on the phone, so I had to go down to the school, walk into the correct offices, and demand to talk with someone with a lofty “I’m a former college professor” entitlement voice. I was shocked by the inefficiencies and unprofessionalism of the school administration.
Getting Ian registered with the Office of Disabilities was another bureaucratic challenge. They simply didn’t answer their emails. I had to again walk into the office and demand help.
There is no way that Ian could have busted through that bureaucracy on his own. I’m sure that many, many typical students with complicated lives were unable to get through the application process this year. Perhaps that’s why community colleges continue to struggle with enrollment.
And in the end, the Office of Disability did not offer any real help for Ian. They are set up to help students who are deaf, blind, or have dyslexia. They offer extended time on tests, access to braille learning devices, or opportunities for free tutoring. They offer a small separate program for kids with intellectual deficits (IQ under 90), where they let the students help out in the library and book store. But Ian doesn’t need those things. He needs an aide to jump in to answer Ian’s random questions and decipher college lingo.
Basic modifications and supports that Ian received with an IEP in public schools, do not exist in higher education. Students with disabilities have the guaranteed right to a high school education, but they do not have those same rights in college. I couldn’t even hire someone privately to help out Ian in his college classrooms, because extra people are not allowed in the classroom.
More and more colleges are stepping into the void of colleges for high functioning autistic people. Landmark College in Vermont is one of the best. However, those schools are extremely expensive — over $70,000 per year. And I’m not sure that a full BA program is right for Ian. A certification or a community college AA degree might be enough for him to get a tech job. He has no interest in a traditional liberal arts curriculum or dorm life.
Slight tangent – there are more and more college programs for young adults with mid-level autism (verbal, intellectual challenges), which is really exciting. Here’s a cool new program at Rutgers for people with that variety of autism. Many of those programs are getting massive federal funding, so knowledgable parents can leapfrog from 18-21 programs to free residential college experiences for their young people, which keeps those kids happy and busy through their 20’s. More on these programs another time.
Because we don’t want to send Ian to a college for autism yet, we’re getting him used to the highly imperfect local community college. The first step was giving him a basic introduction to college expectations and lingo. We talked about what’s a syllabus, how do you find out the dates for the quizzes and tests, how do you address an email to a professor, where do you find your grades.
I decided to sign him up for one online async class (all lectures on YouTube, no interaction with professor or fellow students) to take the social skills problem out of the equation. I signed him up for a super easy math class that he already completed in high school — Intermediate Algebra, so I took academic challenges out of the equation, too. This semester is all about learning college expectations, because a college classroom is nothing like a high school classroom.
Now, most high school kids probably need this same information. Jonah could have used this information, before we plopped him into a 30,000-student campus with a crazy ambitious course load. He’s doing a fifth year of college right now to make up for the train wreck that was his first year of college. Boys in particular seem to struggle with the transition to college, which explains why only 35% of boys at his school graduate in four years. But the “boys in college problem” is another tangent that I’ll take up another time. Back to Ian at the community college.
To prepare for his async class (YouTube lectures), Ian and I sat down in front of his computer and figured out Moodle and his online textbook. All homework is online, so he had to learn how to write algebraic equations within their homework module. He’s good with technology, but he needed a crash course on what an online textbook was and how it worked.
To prepare for his first online quiz yesterday, we spent one evening earlier in the week downloading an anti-cheating monitor. Downloading the software and setting up the webcam was no problem for him. But I had to explain to him all the rules and why this webcam was necessary and how he had to refrain from making any odd head movement or it would trigger some red flags. Do those anti-cheating monitors recognize weird autistic body movements? We’ll find out.
His quiz was oddly low tech — he had to open a .pdf with the test questions and write out all his answers on paper. Then after it was over, he had 20 minutes to scan his worksheets and then upload it to a special spot on the class website. We watched the professor’s explanation of the testing procedure in the YouTube video five times, until we understood the rules. Our scanner is a little temperamental, so I had to help out here.
There is no way that an average person with autism could manage all those complicated steps required to take a simple quiz. I imagine that a lot of average typical students struggled with those rules. Jonah said that he knew fellow students who failed tests at his school, because they had to pee in the middle of a test, and the anti-cheating software zinged them.
So, how’s it going with Ian? Now, that I’ve walked him through the procedures and expectations and lingo for the first month of the class, I think he’ll be able to finish the rest of the class on his own. I might sign him up for more classes in the spring, but I’m unsure if he is ready for an unsupported classroom yet.
More kids could benefit from bureaucracy busting and lingo explaining, and not just those on the spectrum. We need better transitions from high school to higher ed/job training, but with all the cuts in higher ed, we are getting less. There is a sink or swim mentality to the post-high school world that is deeply inequitable and rather sad. While there are some silos of hope, like the new college programs for students with intellectual disabilities, we need more post high school supports for all students who have some vulnerabilities or differences.
Apt. 11d 
I really appreciate your clear descriptions of your experience alongside all the context – there’s really a lot of food for thought there.
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I also really appreciate these descriptions of the personalized experience at the intersections of disability and college and life. It’s easy to not see something you don’t experience. I did know that accommodations area different in college than they are in K-12, with different laws applying. I heard that as advice to students (and their parents) that they have to reach out for the accommodation, and that it’s better to do it before encountering issues (i.e. ask for a notetaker before you are failing the class, if you have had that assistance in the past and it helps you and you have an identified disability).
Is the inability to hire one’s own aide a general prohibition? or is it COVID related? I’m thinking along the lines of the blind swimmer who didn’t swim at the Paralympics because she couldn’t bring her personal aide (who is also her mother) along. But that was a COVID rule (and, without COVID, I don’t know what access the aide gets to venues, etc.). And, the swimmer didn’t have her aide in Rio, so it was a new negotiation and accommodation, to allow personal aides at the Paralympics, I think.
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bj said, “Is the inability to hire one’s own aide a general prohibition? or is it COVID related?”
Yeah.
I wonder what a disability lawyer would say about that. It seems like the kind of thing where a disability lawyer letter would do wonders, especially if the aide can demonstrate that they have been vaccinated.
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Laura, your community college sounds exceptionally terrible at handling registration/accomodations.
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Yeah. I think budget cuts and COVID made the situation worse.
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MIL-the-brain-injury-specialist strongly encourages low class loads for college students with disabilities.
Our oldest is in her second year of college. In her first year of college, she started out both terms with 5 courses plus a mandatory twice-a-week assembly. Both terms, we did a check-in with her one week in and asked how it was going and it turned out that there was a course she wanted/needed to drop. She made up one of the dropped courses this past summer. She signed up for 5 courses this fall and decided to keep all of them when we did our check-in after the first week of class (the check-in is kind of a tradition now). Her grades have been very solid. I realize that some kids might have breezed through the 5 course load last year, but I know that she was successful with 4. My husband and I are accepting of the possibility that she may need 5 years to graduate from college.
We’re still waiting for her academic program to gel and for some sort of graduate or vocational path to open up, but so far so good. She’s in an honors program where the students have a lot of latitude with regard to choice of course. She has been discovering that she doesn’t really love writing papers for her lit courses, which is worth knowing and thinking about. I don’t think I really thought about the implications of that until graduate school, when it was pretty late!
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Thanks for writing this. I teach at a community college where I’ve felt I should be supporting students who are on the spectrum more effectively than I am, but the accommodation process can be a challenge when it’s not a question of extra time or having an invigilator present. Mostly, I’ve noticed that young adults with ASD struggle with executive functioning issues and often benefit from parental support–but their parents must be exhausted by these extra demands, since each course is a bit different. I’d love to read more about how educators could work collaboratively with families.
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southislandgcabc said, “Mostly, I’ve noticed that young adults with ASD struggle with executive functioning issues and often benefit from parental support–but their parents must be exhausted by these extra demands, since each course is a bit different. I’d love to read more about how educators could work collaboratively with families.”
I also wonder what the legal hurdles are for that.
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Laura wrote, “Professors could be more open to the fact that there is a parent overseeing things in the background. I had signed up Ian for a second class, but the professor refused to tell me whether his online class offered video lectures or was just a series of powerpoint slides. He gave me, “would like to tell you, but FERPA.” So, we dropped the class.”
There’s no way that is FERPA.
(That claim reminds me of all the people who think that asking them about their vaccine status is a HIPAA violation.)
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southislandgcabc said, “Mostly, I’ve noticed that young adults with ASD struggle with executive functioning issues and often benefit from parental support–but their parents must be exhausted by these extra demands, since each course is a bit different. I’d love to read more about how educators could work collaboratively with families.”
Also this: https://vm.tiktok.com/ZM8RrYLo5/
ADHD is genetic, I swear. I am going through a massive audit of my life and my parenting and realizing that I am a f*ing superhero just for keeping these kids alive for the past 22 years.
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Wendy said, “ADHD is genetic, I swear. I am going through a massive audit of my life and my parenting and realizing that I am a f*ing superhero just for keeping these kids alive for the past 22 years.”
ADHD is way genetic.
One of my recent discoveries is that there are ADHD women EVERYWHERE. People don’t notice them, though, because ADHD is a boy thing and people grow out of it…except when it isn’t and they don’t.
I’ve been realizing that there are a lot of grown ADHD women who cope by being extremely high energy, constantly in motion–cause if you keep moving, the theory is you’ll get to whatever needs to be done.
The problem is, add too many balls to that juggling act, and she may not be able to keep it going.
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Professors could be more open to the fact that there is a parent overseeing things in the background. I had signed up Ian for a second class, but the professor refused to tell me whether his online class offered video lectures or was just a series of powerpoint slides. He gave me, “would like to tell you, but FERPA.” So, we dropped the class.
Every kid with ASD is different, but the office of disability services should be more comprehensive help than is usually available at most schools. Some kids need help with executive functioning. Other kids need more help with understanding the norms and expectations of a college classroom and need a 1-1 aide at least for the first semester.
I think that professors don’t really need to do much except be open to diversity. Help should come from the Office of Disability Services.
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I think the parent backgrounding could be done with the consent of the student and that should be easier to arrange than it is. I know parents who have permission from their students to look at their grades (as a condition of paying) so it doesn’t seem like it would be a big ask to have a boilerplate document that could give a guardian access to sylabus/etc (or a designated person as a disability accommodation). They’d have to grapple with the cheating concerns (wouldn’t want to designate a person who would take tests for a student) but it seems doable. I can’t imagine that telling someone, anyone, whether lectures are slides or videos would be a FERPA violation. I’d be tempted to just ask for myself, as though I was considering the class.
A 1:1 aide is a big financial ask. Rutger’s program (which looks very interesting on its press releases & facebook page) costs 7K (in addition to tuition). I’m very interested in hearing how it is working in practice, what kind of supports are being provided and how much they are helping the students they are supporting and how many students they are supporting.
Have a bit of cynicism about these fancy, privately supported (big donations) programs that then charge individuals for access and then are expected to be self supporting. But I want them to work.
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” I had signed up Ian for a second class, but the professor refused to tell me whether his online class offered video lectures or was just a series of powerpoint slides. He gave me, “would like to tell you, but FERPA.” So, we dropped the class.”
That professor is misinformed about FERPA. FERPA has to do with information about a student’s specific performance in class as well as other personal identifying information. I speak to parents very occasionally, and I have sometimes spoken in generalities about my class and the way I teach. I say, ” I cannot speak about your child specifically, but in general, I grade according to X standards and I run classes in Y way.”
Also, all schools have or should have a FERPA waiver system. There are cases where a FERPA waiver has been filed, and I can speak with the parent freely. I have a colleague who meets with his advisee and his advisee’s academic coach. I do not have these done with E, to be honest, but I have access to his emails, his financial records at the school, and his LMS, and that is usually enough.
When you are in a case like that, you should reply to the professor’s email and cc- the chair and/or dean. Especially if it is a taxpayer-funded college.
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Wendy is correct about FERPA. When I caught a plagiarist at a ritzy college where I was adjuncting (which had extremely strict policies about reporting – once I caught it it had to go to the chair), the student’s parents wrote a long letter just raking me over the coals about how their wonderful child just misunderstood something and of course should not have been penalized. I said I couldn’t discuss it without a FERPA waiver, and the student eventually provided one, after which I wrote a long letter myself.
If you teach at non-ritzy colleges you rarely have to deal with angry parents, which may be why the prof doesn’t understand FERPA (or maybe is just pretending not to).
Have you thought about hiring someone who is a student in the same program at the CC? They could take the class themselves – I’m guessing if you covered that it wouldn’t be too expensive – and do the kinds of things Ian needs, since it sounds like it’s mostly social.
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Oh, yes, I know the professor incorrectly used the FERPA card. And, of course, I told him that and explained that I have years of college teaching experience. He didn’t respond to my email.
I didn’t care enough to go up the food chain to his chair, because his class sounded awful anyway.
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Not on topic, but you are one of the few people who I know of who have talked about using the WIC program (early blog days), and it is vaguely related because of how the bureaucratic process of obtaining resources, even ones you are wholly entitled to.
A chain on twitter on the Alaska requirements for using the WIC program: https://twitter.com/pervocracy/status/1447179031636500481?s=20
(Example, only whole wheat flour tortillas are allowed)
I looked in my Whole Foods cart and found a series of items that are apparently not allowed under SNAP (Carr’s crackers, for example). Shopping under these restrictions would be the beginning of a death of a thousand cuts for me, I think.
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Those are nice crackers. I put Boursin on them.
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They’re nice with the $23/lb brie that is not restricted under SNAP, according to Whole Foods.
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Food restrictions are just one of inconveniences/added difficulties of WIC.
The really important part of WIC is the formula vouchers. Formula is super expensive, and that’s why most mothers really, really, really need those vouchers. But you can’t just use one voucher and not another. You MUST use them all at the same time. And that means tons and tons of milk. Like four gallons. Which is just awful, when the nearby supermarket doesn’t accept vouchers and you have to walk with your baby in a stroller a mile away to get the food and then somehow push your baby back home along with four gallons of milk and other groceries. I’m still scarred from that.
And to get the vouchers, you have to wheel your baby in a stroller to the WIC offices four subway stops away, fill out forms, and watch paternalistic information videos about nutrition.
Also, redeeming those vouchers is awful, because everybody judges you. The store manager has to open up the locked formula case and looks you and down trying to guess why you’re on WIC.
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Could you recruit an aid among his fellow students at the college? They would have access to the same classes and would be able to offer low key support where they have to be anyway and make a few dollars at the same time. Like in my son’s high school where they have volunteering notes buddies as a help for kids who struggle with that. This would be much easier to organize through the college if they were not so useless.
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I feel like that’s a lot of responsibility for an untrained college student. Aides that the schools provide are usually adults who have at least some training on autism and social skills.
Also, I would have to pay the student not just for the time, but for their spot in the class. A community college class that meets once a week costs $800-1,000. They would probably expect $20 per hour.
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