Next Steps

Privilege comes in many different forms. The most obvious forms of privilege — income, race, and gender — are frequent topics of conversation. Other forms of privilege – intact families, educated parents, extended families, natural talents — are acknowledged, but are usually mentioned more frequently by conservative commentators and sociologists. In my world, there’s a third type of privilege that looms large. It’s the privilege of having a typical brain.

As a parent of a kid with high functioning autism, I’m in a grey area. Many of my friends have children with higher levels of disfunction than my kid. When we meet up for drinks, they tell me their stories of paperwork hell, of kids whose obsessions take their families to the brink of sanity, of their hopes that their children can one day work in a supermarket. I keep my mouth shut and listen. They don’t want to hear that my kid is taking the PSATs next month and is marching with the band.

If I go out with friends with typical kids and they tell me about their teenagers who pass their drivers’ test and shop for prom dresses, I keep my mouth shut and listen. They don’t want to hear that my kid won’t be able to get a drivers license, not because he couldn’t operate the car, but because it takes social skills to navigate a four-way stop sign.

I tend to not share too much about my kid with other parents, because he is privileged compared to some and less privileged compared to others. But since this is my blog, I’m going to spew here.

Ian’s going to graduate from high school in less than two years and I don’t have a clear plan about what to do with him. While it is tempting to see if I could get him into an elite, four-year college, I think it’s not the right path for him. He would do fantastic in certain classes, but be at sea in a dorm and would struggle with gen ed requirements.

High schools are required to educate kids until they are 21, but those programs are aimed at kids who are much more disabled. Those programs focus on teaching kids how to work manual labor jobs and how to be independent. He would be in classes with kids who have much lower IQs and would need extensive help just learning self-help tasks like making a sandwich. Ian is more independent than my typical college kid.

I spent hours researching colleges for autistic kids last week, but those programs are very expensive. I also don’t think he needs that type of education. He really just needs a piece of paper that says he can program computers and then be put in front of a computer for a job. He can program for 12 hours a day and never get tired. He’s that weird prodigy that you read about from time to time.

I went back and forth for days last week. Should he go to an 18-21 program, which would be free and would teach him basic job skills that any kid needs? Lots of typical kids have summer jobs in a supermarket, so it wouldn’t hurt him to learn how to bag groceries. But he’ll get bored really quickly.

Should I send him to a community college, where aside from the computer classes, he would be totally isolated and wouldn’t get support for his weaknesses? That unstructured environment would be stressful for him. In some ways, he’s a 12-year old, who needs grown-up support.

After going back and forth for days, I decided that instead of thinking about this decision as “an either/or,” I would think of this as an “and.” He can do both. From 9-3, he can learn to bag groceries, and from 3-9, he can go to the community college and learn C++ and Java. Fingers crossed.

My experiences with Ian have given me a taste of the experiences of people and families who have less privilege than ours. Ian will be in classes with kids who have more financial struggles. I’m worried about his ability to have a job that will pay his rent. I have a lot of other worries, too, but my concerns about the job prospects for people without a BA put us in the same boat as kids from poorer backgrounds.

I have no road map. I know about four-year colleges and careers. I can help my older son through that terrain. I don’t know much about alternatives. That’s partially why I’ve been writing about that topic a lot in the past year. I’m desperate for alternatives.

This experience also has pushed me way to the left on social issues in recent years. We need a social safety net for people who don’t have the privileges that take them to college and middle class jobs. Even if things work out okay for my kid, I know too many families who are struggling.

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24 thoughts on “Next Steps

  1. I teach at a community college in Missouri, and we have many students like your son. He would not be isolated–at our campus alone, we have over 500 students enrolled with one or more disabilities, and many students have some form of autism. I have a couple in class this semester, just like i pretty much always do. While the accommodations in college are different from those in high school (different laws obtain), most of us do our best to make things work for everyone. I am sure your local CC can help both of you. One more point: most of our students work full- or part-time. Scheduling can be a bit problematic, depending on how many sections of a given course are offered, but most of our students manage pretty well.

    If you are in the service area for Brookdale College, check in with Dean Matt Reed. https://www.linkedin.com/in/matthew-reed-b7babb4b/

    Best wishes!

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  2. I was going to say: I bet a community college or a regional comprehensive in your area would be open to starting a program like this, but it sounds like based on the above post that they may have already. What caught my mercenary, cash-strapped-regional-comprehensive-college eye, was that there is money to support this for high schools through age 21, so perhaps that money can be used to support college programs. This also seems like something rich computer start-up people (if there are any of those left) or big computer companies might be interested in throwing some money at.

    So, starting a school, or spearheading a program like this at an already existing school, could be a new project for you.

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  3. af184793 said:

    “What caught my mercenary, cash-strapped-regional-comprehensive-college eye, was that there is money to support this for high schools through age 21, so perhaps that money can be used to support college programs.”

    That is a very good point.

    “This also seems like something rich computer start-up people (if there are any of those left) or big computer companies might be interested in throwing some money at.”

    That’s also a good idea, although the geography may be unfavorable.

    There’s that dad (somewhere in Scandinavia?) who built a company to provide jobs for similar young people–I wonder if there’s a business-plan-in-a-box available and ready to go?

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  4. Laura said, ” He can do both. From 9-3, he can learn to bag groceries, and from 3-9, he can go to the community college and learn C++ and Java. Fingers crossed.”

    That sounds very reasonable.

    I’d also want to make sure that he remembers to do self-care stuff. For example, there is a member of my household (naming no names!) who often feels really bad in the late morning…at which point we discover that they haven’t had breakfast or haven’t had anything to drink…So really basic stuff may need to get built into the schedule.

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  5. First, I hear your rant and your struggle trying to find a path for a unique child. This is not an issue I personally navigate — my kids are perfectly suited to the standard path of school to college and potentially to graduate degrees, which also seems to be their inclination, and is a path about which we are knowledgeable. I know some children who are following different paths and even when those paths are amazing and successful, I see the vague sense of discomfort families have about talking about them (the one who has earned 3 million already is not even a complete exception).

    Having confessed my ignorance and potentially responding with advice when I really don’t know enough to offer, and, I think you didn’t ask, I will add the following thoughts. Does he need to go to community college to learn C++ & Java? Depending on his level of competence, might he be able to work at an industry job now? or soon? Do you have any contacts in the industry? Kids I know who are strong programmers are sometimes (and, yes, social capital matters here) find programming positions while they are in high school. The kids I know, some of whom are on the spectrum, have fairly low support needs, but ultimately they are doing what you describe Ian doing (12 hours at a computer, producing output).

    I know at least one child who is on the spectrum who found a place at the PONG center: http://pong-center.ucsd.edu/

    But, his parents have many connections.

    There is a new autism center at Rutgers — a trend in autism research is to have individuals with autism involved (the child I know started with programming in an autism research lab at UCSD). Might you be able to find an entry? That’s how a child I know managed the programming position.

    Might there be certificates that Ian could earn with your support — they exist now, certificates that say you can do some kind of programming. Some of them can be earned online (I believe one of the bloggers at Unfogged earned such a certificate).

    I also know a child at the Digipen institute — in WA state, but, potentially such programs exist closer to you?

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  6. Thanks, all, for the input. Yes, we’re going to explore all the certificate options at the local community college. Rutgers is a little far for a daily commute, but it’s possible.

    There’s a lot more for young adults like Ian in CA and WA, because so many computer programmers are out there and they tend to have kids with autism.

    A technical college isn’t out of the question, but I think I would want him to spend a couple of years at a community college first. He needs higher ed training wheels.

    I’ve gotten so little help in these matters from the special ed support staff and the high school guidance counselors. These comments were so much more helpful than input I’ve gotten from school professions.

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  7. Dr. Hallowell (the ADHD guy) has a bit where he tells parents never to worry alone.

    I think that’s impossible to follow literally (never!), but it’s a good guideline.

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  8. As I may have mentioned before, my daughter has learning disabilities due to her extreme prematurity. She is in her second year of community college. As always, she doing well in the subjects she does well in, and poorly in the subjects that depend on the section of her brain that was damaged by IVH and PVL. So, despite having a less than steller GPA, she was hired by the school as an English tutor. (she just started. we’ll see how that goes). I definitely worry about her future, and I can do shit-all about it. Throughout high school, I reminded her that one of her strongest assets is her perseverence, and that she would need to use it throughout her life. I reminded her that even though it takes her much longer (than typical others) to learn new things, that once the tipping point of repetition sinks into her long-term memory, she’s fine: i.e., don’t give up. “Your mountain is taller, kiddo.” Also: “you don’t have a choice.” And she knows that. But…in the meantime, she may have to repeat some classes, because that’s how it works. The System doesn’t give a rat’s ass about people who aren’t neurotypical. They are considered throwaways.

    I was pretty blunt about telling her this, and that her main task was not to *be* a throwaway. Keep pushing. Keep asserting herself. Make the path by walking. I really emphasized the fairly recent historical past, that people were shut out due to race or sex, and to see herself as one of those folks—the wave of individuals who kept pushing against the boundary until those walls collapsed.

    Illinois does offer help for students with IEPs. The Department of Rehabilitation (DORS) has caseworkers to facilitate an education path for students with disabilities. My daughter has a caseworker. It’s a tremendous help, because like I said, I know fuck-all about this. I graduated from community college in 1986, when I was 18 (early high school graduate. good lord I hated high school). Maybe New Jersey has something like that. The goal of this program is to keep young adults with disabilities from falling through the cracks and becoming yet another part of the permanent underclass. Find out if you have an equivalent to a DORS program.

    (This was something I found out about via IEP meetings. But, my kid attended a working class high school that is motivated to improve their statistics. Just saying.)

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    1. lubiddo – you’re a good mom. Not sure, if anybody told you that lately. So, I will.

      Every state is different. In NJ, there’s a department of vocation rehabilitation, which sounds similar to your DORS. But DVR doesn’t do much for people under 21. They want the schools to care for those young people until 21. The schools don’t want to do that. So, there’s a big problem when it comes to caring for people with disabilities in New Jersey between 18 and 21.

      My guess is that when Ian’s 21, the state still won’t have much for him, because all the resources go to individuals with more severe issues. They don’t want to help people who have nonverbal IQs around 130.

      Ian is registered with the state as a person with a disability. It took me two years to get through that bureaucracy. And at the end, it took me another two years to figure out how to get services. There wasn’t much. They provided $800 for a summer camp, but only at the handful of places that they had approved. None of which were appropriate for Ian. They also provide respite care, but that’s another train wreck. We finally figured out a shortcut through that respite care system, thanks to a friend who’s more savvy than I am. We get $200 per month for that.

      Ian’s aide at school has two adult children who are deaf. She said that she can’t get the state or insurance to pay for their hearing aides. After this woman works all day with Ian and his classmates, she puts in another shift at the supermarket.

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  9. “Privilege comes in many different forms. The most obvious forms of privilege — income, race, and gender — are frequent topics of conversation. Other forms of privilege – intact families, educated parents, extended families, natural talents — are acknowledged, but are usually mentioned more frequently by conservative commentators and sociologists. In my world, there’s a third type of privilege that looms large. It’s the privilege of having a typical brain.”

    Seems to me that applying the descriptor ‘Privilege’ makes discussion of these topics less fruitful. I think ‘Advantage’ is sort of better: you can think about which kinds of advantage are illegitimate, which you would like try to to compensate for. I think you want to avoid income-race-gender disadvantages controlling and limiting the success and happiness of young people. You don’t want to do it by empowering Diana Moon Glampers! You want to lift people up, not cast down those who do well.

    Kids with the advantages you list ” intact families, educated parents, extended families, natural talents” as well as neurotypical – these are good things, and you want these kids to flower and contribute to the society. And then you think how to lift up kids who have broken families, less educated parents, scattered families, where a supportive work place can enable a non-neurotypical person to contribute.

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  10. ds wrote,

    “Seems to me that applying the descriptor ‘Privilege’ makes discussion of these topics less fruitful. I think ‘Advantage’ is sort of better: you can think about which kinds of advantage are illegitimate, which you would like try to to compensate for.”

    “You want to lift people up, not cast down those who do well.”

    Right.

    “Kids with the advantages you list ”intact families, educated parents, extended families, natural talents” as well as neurotypical – these are good things, and you want these kids to flower and contribute to the society. And then you think how to lift up kids who have broken families, less educated parents, scattered families, where a supportive work place can enable a non-neurotypical person to contribute.”

    Right.

    Additionally, there is evidence that just living in a community with that stuff can benefit kids who don’t have it themselves. I don’t have the stats at my fingertips right now, but I’m vaguely remembering seeing stuff about that.

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  11. True you want to lift people up (in general). But, this arguing about words doesn’t address fundamental concepts or issues and there will be no perfect word. I, for example, see advantage as even more problematic for the same reasons you don’t like privilege. But, I see this discussion as a digression. And, I note, there are times when I disagree with word usage as well or might want to use a word that others disagree with. In general, I’d agree to use the word introduced for the concept unless it was offensive and to use the word an individual chooses to use to refer to themselves. An example: “Indian” for the indigenous peoples of North America. I don’t like it but I won’t argue about it and I’ll use it if the Indian person wants to use it for themselves.

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    1. bj said,

      “But, this arguing about words doesn’t address fundamental concepts or issues and there will be no perfect word.”

      The problem is that “privilege” has very negative associations, and using the word suggests that having the thing is somehow unfair that ought to be taken away, whereas it might just be a good thing that we ought to wish that everybody had (like loving, involved local grandparents and extended family or a safe neighborhood or school).

      “I, for example, see advantage as even more problematic for the same reasons you don’t like privilege.”

      That’s arguable.

      Consider, though, the difference between saying “Chris has advantages in this competition” and “Chris has privileges in this competition.” Advantage might just suggest that he’s faster or has trained harder or knows the terrain better–but privilege suggests that he’s being given a head start or permission to take a short-cut.

      I agree that there can be a negative tinge to “advantage,” but it’s a heck of a lot more neutral than “privilege.”

      I personally mentally substitute in “blessings” for “privilege,” but a lot of people would balk at that word, too.

      “But, I see this discussion as a digression.”

      I don’t, because words shape how we conceptualize things. See, for example, racial slurs or misogynistic expressions. It’s not “just” words if it encourages hatred and envy. Also, politics would look completely different if word choice didn’t matter.

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      1. The word privilege is supposed to mean that he has privileges that were just given to him, especially in the context in which it was developed. Since, my premise is that I will not discuss the words, I’m not going to discuss it in the context in which Laura used it for this post, because it is her post, her meaning, and I can discuss the concept without arguing about the word. And the context is guiding her atypical son into a meaningful adult life.

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      2. It’s not the main point of Laura’s post, so I don’t want to make too much of it, but the original post and some of the more theoretical discussion elide two rather different concepts. Having two loving parents is a good thing which definitely conveys an advantage, and it’s hard to imagine a world in which it wouldn’t. The same applies to being neurotypical or being free of other congenital disadvantages.
        We might want to ameliorate the lot of those who suffer these disadvantages, but we also want to decrease the number of people who have the disadvantages. Having white skin is a morally neutral thing and to the extent that it conveys a social advantage, that advantage is unjust. We don’t want to reduce the number of people who have non-white skin, we want to eliminate the advantage itself.

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  12. Tell us, Laura, if there’s information, advice or paths that we might be able to offer any specific information about. I realized I found myself googling and realized how ridiculous that was.

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    1. Ha. Thank you so much for doing so, and caring about my kid. Just brainstorm here with you all was good enough. We still have two years to figure things out. While I would love to know what exactly we should do, so I wouldn’t be so neurotic, I also know that it’s impossible to figure things out until we get there.

      (And just “sold” that college application/Jonah essay. “Sold” gets quotes, because I gave it away for free, because I wanted to work with a new publication.)

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  13. Conor Friedersdorf just had a piece on some recent distortions of privilege talk:

    https://www.theatlantic.com/ideas/archive/2019/09/david-cameron-privilege/598099/

    “The occasion was the publication of former British Prime Minister David Cameron’s memoirs. Many Americans will be unaware of the conservative politician’s family life. His first child, Ivan Reginald Ian, was born with cerebral palsy and epilepsy. The little boy required intense medical care for his entire life. He died at 6. What ordeal could be more harrowing for a parent than watching a child suffer all his life before dying prematurely? Yet The Guardian, a left-wing newspaper, diminished the gravity of this event.”

    The Guardian’s take: “Mr. Cameron has known pain and failure in his life, but it has always been limited failure and privileged pain. The miseries of boarding school at seven are entirely real and for some people emotionally crippling but they come with an assurance that only important people can suffer that way. Even his experience of the NHS, which looked after his severely disabled son, has been that of the better functioning and better funded parts of the system.”

    While it might indeed be wholesome to reflect on one’s own privileges/advantages/blessings/etc., the Guardian story suggests how easy privilege talk about other people makes it to thoughtlessly minimize other people’s suffering, while believing that one is thereby serving the more deserving. Meanwhile, the visible effect of a lot of social media privilege talk is continued erosion of the ability to empathize with people who are not exactly the right kind of victims.

    Additionally, we’re all now familiar with the kind of “I am so privileged” throat clearing accompanied by failure to do anything constructive for less fortunate people.

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