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"If it were up to her, our every last dollar would go to her brother."
June 27, 2013 1:42 PM   Subscribe

"A quarter of U.S. households have a member with special needs. More than 8% of kids under 15 have a disability, and half of those are deemed severe. What we share in common with the parents of all those special-needs children is that our kids have almost nothing in common [...] "Saying you study autism is like saying you study the world of non-elephant animals." Special-needs parents do share one thing: the eviscerating cost of our children." Paying for a Special Needs Child.

What Finn costs now a year
Caregiver $9,555
Diapers $1,800
Out-of-pocket care $5,400
Occupational therapy $10,200

What Finn may cost in future
Cost of lifetime care for an autistic person $2.3 million
Behavioral therapy for children with autism $40,000 - $60,000 a year
Cost of an adult with autism living in a residential facility $50,000 - $100,000 a year

Further reading: Building Networks for a ‘Good Life,’ Even After the Caregiver Is Gone (NYT).
Also worth noting: the ABLE Act of 2013 is pending in Congress.
posted by RedOrGreen (53 comments total) 11 users marked this as a favorite

 
I honestly don't know how to feel about this. I mean, obviously, having a child that disabled is a huge expense and a huge, life-altering change. And then again, I have a hard time relating to someone who can afford at this point to put $50,000 a year in savings.
posted by roomthreeseventeen at 1:58 PM on June 27, 2013 [9 favorites]


Forget this guy, I know two people who are doing this on a far smaller household income. This scenario is like a dream to them. They spend every spare cent on their son in hopes that he will one day get better. There is no plan for him past age 22. He doesn't have a trust or a nest egg waiting for him.
posted by domo at 2:12 PM on June 27, 2013 [1 favorite]


Years ago, there was a good 60 Minutes episode that showed a school district taking away the whole art and music program of a school just to pay for one kid's wheelchair and other special equipment. Which they had to do by law.

I don't know how to feel about it either; but like the rest of health care, the costs can't just continue to go up into infinity.
posted by Melismata at 2:12 PM on June 27, 2013 [4 favorites]


OK, it's a really important topic, with HUGE relevance to much of the audience, which is why this whopper:
"Saying you study autism is like saying you study the world of non-elephant animals."
... is so annoying. No, it's not. It might be like saying you study the world of non-insect animals, or non-apple fruits; the statement's implication is that 99.9% of all children are autistic. Can we stop with the mythologizing of autism already?
posted by IAmBroom at 2:12 PM on June 27, 2013 [16 favorites]


This is a hard one to relate to, as a family with nearly a million dollars in assets isn't really your typical special needs family. It's also very obvious that there is a huge issue with making schools primarily responsible for the care of the disabled, and then dumping those kids out abruptly on their 22nd birthday. And, like Melismata brought up, this makes spending a conflict between disability accommodations and the needs of non-disabled kids, when it would be better put in context of all government spending.
posted by fermezporte at 2:16 PM on June 27, 2013 [1 favorite]


Yeah that analogy is off, but I think the point was within the world of developmental disorders.
posted by legospaceman at 2:17 PM on June 27, 2013


Honestly I feel that this requires so much money for the same reason that the American healthcare system requires so much money: administrative middlemen, bureaucracy, and lack of community / extended family support. The shitty net that's currently set up to catch people is not in any real sense a form of community, and it shows, because instead of just requiring human labor, it requires massive capital. Having a large family unit actually decreases the total amount of work that any one person has to do, in many countries. And in still others, one or a few providers taking care of a large extended family is still the norm. In the US, this is not possible. Just like a lot of pre-global cultures are much better equipped to deal with mental instability, they also seemed better equipped to deal with their elderly, their infirm, and by extension developmentally disabled kids. It's ALL wrong.
posted by legospaceman at 2:24 PM on June 27, 2013 [10 favorites]


I found this article very powerful, but I too was thinking at the same time about the many families who have special needs kids and who have average or below average incomes. My niece is special needs, and being raised by a single mother (my mom). My mom's lucky - she's physically independent and has always been a very calm child who can safely be left to play on her own. But she still can't be left alone at home, though she's 14. And none of us know what will happen after she leaves school at 21.
posted by jb at 2:43 PM on June 27, 2013 [1 favorite]


legospaceman, forgive me if I'm misunderstanding you, but I think that when you say "extended family support," what you're really referring to is mostly women and girls doing an enormous amount of unpaid, unrecognized labor. The "community" that supports people with disabilities and special needs in many parts of the world basically consists of women forced to provide long, difficult hours of care and treatment, at the expense of their own needs and wants. Daughters, wives, mothers, grandmothers, they're pretty much conscripted by social and family pressures (and sometimes even by violence or threat of violence) into giving up their own human labor and capital. The reason that a lot of wealthier countries depend so much on paid providers stems, in large part, from broad expansions of the rights of women to choose for themselves whether to work outside of the home, and from an enforcement of the rights of children to go to school. That's not a sign that other countries are "better equipped" to deal with people who need special caregiving; that's a sign that other countries are dealing with those caregiving needs at the expense of individual women and families, instead of sharing as a society the costs of caring for the most vulnerable members of that society.

I absolutely agree that bureaucracy is expensive and that the current system in the US isn't working. We still, far too much, place the financial burdens of what is, essentially, luck of the draw, on individual families rather than attempting as a society to mitigate and share the risks that we all face. But I think it's a cop-out to say that we need "community" and a "large family unit," when what those phrases really mean, in practice, is that women and girls get forced to give up their independence and their freedom of choice if they're unlucky enough to have family members who require assistance.

(And, I should say, even in the US (and I suspect, in other wealthy nations), when a family member needs unpaid care, it's three times more likely to be provided by a woman than by a man, and the financial, emotional, and physical costs to those woman are substantial.)
posted by decathecting at 2:43 PM on June 27, 2013 [116 favorites]


lack of community / extended family support

So people without large families shouldn't be irresponsible enough to have children, because one of them might need more care?

What about people who left their abusive large families to try to strike out on their own? Do we need to count cousins before issuing fertility licenses?
posted by sparklemotion at 2:44 PM on June 27, 2013 [3 favorites]


That Registered Disability Savings Plan (R.D.S.P.) in Canada as described in the NYT link makes so much sense. I hope the ABLE Act would pass in Congress.
posted by of strange foe at 2:50 PM on June 27, 2013


Forget this guy

The fact that this guy does, in fact, have the means to cope reasonably well with an autistic child doesn't really take away from the fact that it is an extraordinary financial and emotional burden. The fact that many poorer families face this without adequate resources is, often, their tragedy, not an occasion for demonstrating the superior pluck and resolve of the 99%.
posted by yoink at 3:04 PM on June 27, 2013 [12 favorites]


Forget this guy

Let's also not forget that making an average of $160,000 per year is very, very far from being in the 1%.

Plus the fact that they probably spend a lot of money on services that might be covered by government programs if they weren't as wealthy.
posted by sparklemotion at 3:29 PM on June 27, 2013 [4 favorites]


Wow, a lot of comments so far are so heartless.

I can't favorite decathecting's comment enough. If you know people who are supporting an autistic child with less money, it's not because they're just so much less wasteful and inefficient than this family(seriously? Is that what people mean to imply with these "forget this guy" and "I know families who do it for much less" comments?). It's most likely because a woman in that family has given up her own career, her own free time, her own dreams, to care for the disabled child. Not all costs are monetary.

In this case, the mom gave up her job and they're still paying for extra help, because she can't handle it by herself. As the article says, the $24,000 per year they pay to a caregiver is the price of maintaining a semblance of a normal life for the parents. If you know someone who doesn't pay that, probably one or both parents has given up any semblance of a normal life.

So, okay, these people are able to do that, to maintain a little bit of the freedom and happiness that parents of healthy kids take for granted. You begrudge them that? What lucky, lucky people they are, with their "million dollars in assets" (most of which is they say is the value of their house, in New York)? You can't feel sorry for someone unless they live in a crappier apartment than you do, really? Even someone with a child who has heart-breaking problems they'll never be able to fix, and whose future they cannot assure, no matter how much they spend in the present?

Sheesh.

Personally it is thinking about disabled people, sick people, old people, people who will never be self-supporting, that led me away from my teenage Ayn Rand fantasies. The costs of caring for these people are too much, far too much, to be borne by a single nuclear family, and too great to be borne by the women in the extended family either. The only humane thing we can do is all of us, as a society, pitching in to help these people. And this story just underlines that.

Capitalism is fine for the young, healthy, and able, but the costs of disability are far too high for individuals to pay (even for a family that makes $160,000 per year) and must be shared, if we want to think ourselves civilized at all.

And for those who don't believe this -- remember it could happen to you. You could suffer a brain injury tomorrow or have a child with congenital disabilities next year, and you will be bankrupted by it eventually, no matter how smart and strong you are, and almost regardless of how wealthy you start out, without help.
posted by OnceUponATime at 3:31 PM on June 27, 2013 [41 favorites]


Thank you, decathecting. I was typing-and-deleting my way through points like yours but was fortunately called to a meeting before I could post my incoherent sputtering.
posted by rtha at 3:40 PM on June 27, 2013 [2 favorites]


Honestly I feel that this requires so much money for the same reason that the American healthcare system requires so much money: administrative middlemen, bureaucracy, and lack of community / extended family support.

Here's a thing to boil your blood:

There are augmentative and alternative communication devices out there; they are popular with families with severely autistic members, for obvious reasons. The companies that make the devices regularly charge between $10k and $20k USD. Generally, insurance covers this.

When the iPad came out, a few people came up with ~$200 dollar alternatives to these devices.

The device companies successfully sued to have the software crippled so as not to duplicate what the devices did.

So, add corruption and bullshit patent system to the list.
posted by curious nu at 4:06 PM on June 27, 2013 [12 favorites]


I don't know that there's really not something to be said for examining the idea that, say, $50k/year ABA therapy might be marginally more effective than something a tenth the price, but not necessarily enough so to justify the expenditure if you aren't rich. A very expensive private school is also likely to give your kid a much better education than a public school; in the absence of perfect public schools, is anybody a failure as a parent for not sacrificing everything to get their kids into the best possible school? If they aren't, are we expecting too much of the parents of special needs kids that they do the same?

But that seems to be the model: Provide a laundry list of the things that represent a gold standard of treatment and then look down on anybody who doesn't somehow find a way to check off every box. At some point, there's a cost where the incremental benefit, even if it exists, is not necessarily worth it to every family. Yet, I've definitely seen a social stigma to families that, like, take vacations now and then while their special needs kid is not yet perfectly behaved, and people placing blame on the parents not spending every last dime on care. Given that, hell yes, it's hard to be upper middle class with a kid on the spectrum, because there's always going to be one more thing you could do, you don't get as much government support, and the expectations are so much higher because of the perception that you can afford it.

And I am not famously sympathetic, here, to the woes of the upper class. In this case, though, they might have it better than a poor family in the same circumstance--there is no sorrow in which a good income is of no avail, etc--but it's still ridiculous.
posted by Sequence at 4:14 PM on June 27, 2013 [2 favorites]


I actually sat through a presentation from a residential school for children with disabilities today. The school is probably in the outer end of the cost spectrum, but the cost was $240,000/year. It was outrageous.
posted by Bulgaroktonos at 4:23 PM on June 27, 2013


Are we eligible for other benefits? Good question: Part of the struggle families like ours face is the detective work it takes to even discover the benefits hidden, like Easter eggs, in the nooks and crannies of state and federal policies.

And even if you do find the benefits, and figure out how to apply, and get a response, and the response is that you qualify, good luck actually getting anything.

We qualified for respite care in 2011 but have yet to receive a minute of it. We're on the "no paid services" list, along with 17,000 other people in our state -- and that doesn't include people who haven't applied because they either don't know how or don't see the point.
posted by The corpse in the library at 4:29 PM on June 27, 2013 [4 favorites]


The device companies successfully sued to have the software crippled so as not to duplicate what the devices did.

Link? What your describing is wacky and doesn't sound like what actually may have occurred. My son's autistic and we've tried several of these apps, and we still have them.

While you can patent a system and method, you can't patent the mere idea of "tap picture, say words." Otherwise, you'd sue the makers of the Speak & Spell.

And of course, anyone can sue for anything, but you can't necessarily win.
posted by Cool Papa Bell at 4:34 PM on June 27, 2013 [1 favorite]


Link? What your describing is wacky and doesn't sound like what actually may have occurred.

Rob Rummel-Hudson (sometimes known as Schuyler's Dad) wrote about it at the time it was taking place, here is one of his early posts on the subject, and here is a link to the actual suit in question. Here's an article from Time about Apple pulling the app from the app store. Here is a link from one of the plaintiff families about the case being dismissed.
posted by anastasiav at 4:44 PM on June 27, 2013 [4 favorites]


Thanks, anastasiav.

I don't have first-hand experience with this; my nephew is autistic, and while I see him often as a part-time caretaker, I don't deal with any of this stuff directly. From one of those links it looks like it may be available again? I'll have to look into it.
posted by curious nu at 4:51 PM on June 27, 2013


I actually sat through a presentation from a residential school for children with disabilities today. The school is probably in the outer end of the cost spectrum, but the cost was $240,000/year. It was outrageous.

If you took that money and divided it up, you could pay people $55,000 a year to sit with each kid 24x7x365. That includes someone to watch them sleep. How can caring for an autistic child possibly cost that much??
posted by gjc at 5:00 PM on June 27, 2013 [1 favorite]


Here is a link from one of the plaintiff families about the case being dismissed.

The case was dismissed because the parties settled. The iPad app company agreed to pay licensing fees to the original device companies for the use of the patents at issue. As your last link says, "But there definitely was a group that emerged victorious----[Augmentative and Alternative Communication device] users.

In other words, this:
The device companies successfully sued to have the software crippled so as not to duplicate what the devices did.
doesn't appear to be true. It appears that what happened was that there was a patent dispute, the companies accused of infringing weren't able to sell their products until that dispute was resolved, the dispute was resolved, and now everyone is able to sell their products, and users can choose for themselves which solution they prefer.
posted by decathecting at 5:20 PM on June 27, 2013 [4 favorites]


And looking at one of the actual patent itself, the assisted learning device was a crazy complicated thing that looks like it was meant mostly for people with physical disabilities that could customize it for their needs. It's going so far as putting suffixes on verbs. It looks like something Stephen Hawking would have used in the early days of his disease.
posted by Cool Papa Bell at 5:46 PM on June 27, 2013


Maybe we could spend just a fraction of the money going into treatment and amelioration and put it into developing earlier tests, hopefuly in utero, for this kind of thing.
posted by corb at 5:53 PM on June 27, 2013 [2 favorites]


$165,000 annual income and only $9,000 in taxes? Federal, state, and real estate taxes?

How are they doing that?
posted by bcarter3 at 6:10 PM on June 27, 2013


Well, strike my hyperbole from the record, then! I was SURE I'd read that all such apps had been removed at one point, then returned, but in a lesser form. If I did in fact read that, it was clearly in error! Apologies.
posted by curious nu at 6:16 PM on June 27, 2013


How are they doing that?

Well, unreimbursed medical expenses are deductible to a point, for one.
posted by dhartung at 6:24 PM on June 27, 2013


$165,000 annual income and only $9,000 in taxes? Federal, state, and real estate taxes?

How are they doing that?


I'm assuming they just mean federal taxes.

If the tax tables are to be believed, $9000 in taxes is what is paid on $65,000 in adjusted gross income. So they've got $100k in deductions, credits and deferrals. They are (allegedly?) putting $50k into retirement savings, so that comes off the top. $3800 for each member of the household (at least $15,200 for the 4 of them), mortgage interest and property taxes paid (easily $10k), insurance premiums (easily $10k), and that leaves $15,000 for other deductions like unreimbursed medical expenses.
posted by gjc at 6:46 PM on June 27, 2013


> Maybe we could spend just a fraction of the money going into treatment and amelioration and put it into developing earlier tests, hopefuly in utero, for this kind of thing

Or maybe we could take a fraction of the money going into something entirely different and use it for more treatment and amelioration. The term "autism" covers such a broad range of qualities that it would be impossible to detect it doing tests like amniocentesis.
posted by The corpse in the library at 7:29 PM on June 27, 2013 [1 favorite]


Maybe we could spend just a fraction of the money going into treatment and amelioration and put it into developing earlier tests, hopefuly in utero, for this kind of thing.

I don't know whether there are people with disabilities reading this thread right now. I suspect that there are, just based on statistics. I suspect that at least some of those people have required substantial, expensive caretaking in order to assist with their physical, emotional, or intellectual needs. I suspect also that there are people reading this thread right now who have children or grandchildren or siblings or close friends who have disabilities that have required substantial, expensive caretaking. I suspect that many of us have people we love very much who are living with "this sort of thing" and are in some way expensive for their families and for society as a whole.

All of this is to say that I'd like for us to be a little more cautious before saying anything that could be taken as a suggestion that it would have been better to take away the money it takes to assist people in living full, happy lives, and instead spend that money on trying to make sure they had never been born.
posted by decathecting at 7:37 PM on June 27, 2013 [31 favorites]


Thank you for putting that so well, decathecting.
posted by The corpse in the library at 7:58 PM on June 27, 2013 [2 favorites]


You're putting words into her mouth, decathecting.
posted by spaltavian at 8:54 PM on June 27, 2013 [1 favorite]


corb: Maybe we could spend just a fraction of the money going into treatment and amelioration and put it into developing earlier tests, hopefuly in utero, for this kind of thing.

The rates go up a lot with the age of the parents. Perhaps a better approach would be two-tiered; use social programs to make raising children a lot more feasible at younger ages when the odds are better, and investigate the possibility of freezing eggs/sperm when people are younger to see if odds can be reduced later in life, too.
posted by Mitrovarr at 9:26 PM on June 27, 2013 [2 favorites]


It seems like it's going to be harder and harder to steer clear of any strict definition of eugenics as reproductive technology becomes more and more sophisticated and widely available. That might be a somewhat derail-y discussion to open up in this thread, though...
posted by XMLicious at 9:31 PM on June 27, 2013 [3 favorites]


spaltavian: I've been trying to find another interpretation of corb's comment since it was posted, and I haven't. Care to share one? As one of the people decathecting describes - a person with a disability that has had a financial impact on their family, it may be I'm too close to this issue to read that comment objectively, but ... again, I haven't been able to find another way to read it.
posted by spaceman_spiff at 11:43 PM on June 27, 2013 [4 favorites]


My wife and I have three autistic boys who are 19, 15 and 11. Our lives are far from normal. I've been awake since 3:30 this morning because my Jason, our oldest and most disabled son was hovering over me shaking his headphones to his computer, which he he had unplugged yet again. Jason jonesing for YouTube is a force to be reckoned with. He goes through about a set of headphones a month.

My wife and I don't make anything close to 160K. The financial and emotional demands are great, sometimes crushing, but the joys are far greater.

Here's Jason in Lake Michigan, along with something important that my wife wrote about him and the unrealistic attitudes of others. I've mentioned him here before.

IAmBroom: "...this whopper:
"Saying you study autism is like saying you study the world of non-elephant animals."
... is so annoying. No, it's not. It might be like saying you study the world of non-insect animals, or non-apple fruits; the statement's implication is that 99.9% of all children are autistic. Can we stop with the mythologizing of autism already?
"

I've always hated that saying, too. I lump it in with dumb sayings like: "Atheism is a belief system just like not collecting stamps is a hobby." I think the ham-handed point here is that there is a huge variance in symptoms between people who have ostensibly the same disorder. I know this is certainly true with my own children, who are wildly different. I don't think it means that most kids are autistic, because that's obviously not true. The adults in this world would be a hell of a lot nicer to each other if it were.

legospaceman: "Honestly I feel that this requires so much money for the same reason that the American healthcare system requires so much money: administrative middlemen, bureaucracy, and lack of community / extended family support. The shitty net that's currently set up to catch people is not in any real sense a form of community, and it shows, because instead of just requiring human labor, it requires massive capital. Having a large family unit actually decreases the total amount of work that any one person has to do, in many countries. And in still others, one or a few providers taking care of a large extended family is still the norm. In the US, this is not possible. Just like a lot of pre-global cultures are much better equipped to deal with mental instability, they also seemed better equipped to deal with their elderly, their infirm, and by extension developmentally disabled kids. It's ALL wrong."

You're right in that the collapse of the extended family makes parenting much more difficult. My Mom is old and can't watch the boys very often nor for more than an hour or two. This severely limits our freedom to do things that others take for granted. My wife and I haven't been out to dinner and a movie in at least five years.

The cost and availability of the people who can provide various services are subject to the same laws of supply and demand that everything else is. It takes a special breed of person to be a good special education teacher. They don't make good money in public schools but have student loans to pay off and dreams of living above squalor like everyone else. There are many who choose to work in private schools where they can make a wage that is commensurate with theirs skills. The same thing goes for occupational, physical and speech therapists. By the same token, nobody want to "babysit" kids that are difficult to take care of for $10/hr, so the availability of respite care where we live is virtually nonexistent.

I still prefer living in a first-world nation. I'm a big fan of indoor plumbing.

decathecting: "...women and girls doing an enormous amount of unpaid, unrecognized labor...

Isn't the point he was trying to make that the availability of an extended family helps everyone by spreading the burden among many, instead of just one or two people? "It takes a village" and "a burden shared is a burden halved"?

...it's three times more likely to be provided by a woman than by a man, and the financial, emotional, and physical costs to those woman are substantial..."

I know that we are in the minority but my wife was the primary caregiver to our boys until 2006, when I took on that role. Good people do what needs to be done for the ones that they love, especially their children regardless of any sense of social justice as it relates to gender equality. I know a lot of women who are stuck as single parents of special kids. I feel for them and despise the men who ditched them. Cowards.

The emotional and physical costs to both parents who stay together are substantial.

corb: "Maybe we could spend just a fraction of the money going into treatment and amelioration and put it into developing earlier tests, hopefully in utero, for this kind of thing."

How about if we add to the comparative pittance that society is willing to spend on treatment and amelioration and add more for in-utero tests?

I have been told that my wife and I were stupid and placed an unfair burden on society by having three autistic kids (yes, really.) The idea being that we should have stopped at one.

We knew something was very different about Jason, but Ben was born after we got the autism diagnosis. Ryan decided to come into this world four years to the day after his brother in complete defiance of birth control.

My wife very strongly supports the right to choose, but the word "choice" is the key word here. Her choice for herself is to never have an abortion. I support her in this.

Having three autistic kids is tough, but it's not like a life sentence in the stony lonesome. I have three people in my home who randomly blurt out ridiculously funny non-sequitirs several times per day. We write a lot of them down. They make us very happy and I'll close with some representative conversations that we've had in the last week:

(Background:Ryan passed out in the lab at Riley this morning when we went downstairs for blood work.)
Ben: (later) Don't worry Ry. I passed out once.
My wife: When? I don't remember that.
Ben: It was when I was little. I remember being in a shopping cart, and next thing I knew, I woke up in my bed.
My wife: Ben, you didn't pass out, you just fell asleep.
Ben: Oh. Never mind then.

My wife: Ben, do you like brown sugar Pop Tarts?
Ben: No, I vowed not to eat cinnamon again after seeing the cinnamon challenge on YouTube.
Me: Ben, cinnamon is a seasoning, and like any other seasoning, it's fine if you use a small amount and bad if you use too much. Pancake syrup is delicious, but you wouldn't drink a whole bottle, would you?
Ben: Actually, I think I did that once. Or maybe I bathed in it.

Ryan (in perfect imitation of the Dos Equis guy): I don't always drink Coke, but when I do, I prefer Mexican Coke. Stay thirsty my friends.

My wife: You got an F in citizenship. I'm really disappointed in you.
Ryan: But I don't even know what that is! How can I be expected to get a good grade if I don't know what it means?
My wife: Citizenship is being a good person.
Ryan: I GOT AN F IN THAT???!!!

Ben: *getting out of bed and coming into our room at 3:15 am* I have a question, and it's really important.
Me: What's wrong?
Ben: I don't know if I should upgrade to Windows 8 or not.
Me: Go back to bed.

And this, I shit you not, asked of me while I was writing this:

Ben: I have a question about gay marriage.
Me: What's that?
Ben: How do they splice two guy's sperm together to make a baby? How much does it cost them to rent out a woman's womb to grow the baby?
Me: Laughter followed by a very long explaination

tl;dr: I have three autistic boys and my life is difficult but still pretty damn great.
posted by double block and bleed at 4:25 AM on June 28, 2013 [35 favorites]


double block and bleed: You comment this morning is one of the best things I've read all year. Thank you for that. Your kids are lucky to have such a great parent and I'm sure the reverse is true as well.
posted by willie11 at 4:58 AM on June 28, 2013 [4 favorites]


spaltavian: I've been trying to find another interpretation of corb's comment since it was posted, and I haven't. Care to share one?

Well, the most obvious one would be earlier detection leading to earlier treatment and mitigation. I don't want to put words in her mouth, either, though. Even if she was suggesting what you think, it seems odd at best to doubt the value of pre-natal testing and informed pregnancy. Just like not every undisabled childed is wanted, not every disabled child is wanted. What women choose to do with that information will be judged by your views on choice, but note it's intellectually untenable to be pro-some choices.
posted by spaltavian at 7:21 AM on June 28, 2013 [2 favorites]


Well, the most obvious one would be earlier detection leading to earlier treatment and mitigation

Come, now. Early intervention means birth through early childhood, not in the womb.

I'm as pro-choice as you can get, including for choices I wouldn't personally make, but it seems rather rude to come into a thread about autism on a site where you know there are members who have autism, and parents of children with autism, to advocate for taking money away from treatment and using it for testing "hopefuly in utero."
posted by The corpse in the library at 7:38 AM on June 28, 2013 [6 favorites]


I was very careful to specifically not put words in corb's mouth, to not assume a particular meaning for her words. I was asking her, and others, to think about whether someone might interpret what they're saying as advocating actions that would be hurtful to other members, and to moderate their own comments accordingly. I made no assumptions about what corb was intending when she made the comment (although, privately, I have my suspicions).
posted by decathecting at 9:21 AM on June 28, 2013 [1 favorite]


Isn't the point he was trying to make that the availability of an extended family helps everyone by spreading the burden among many, instead of just one or two people? "It takes a village" and "a burden shared is a burden halved"?

Except that, as far as I can tell, that's not how it actually works in practice the overwhelming majority of the time. "It takes a village," in practice, doesn't mean that everyone in the local area pitches in and provides substantial help and allows family members to lead normal lives in which they can pursue their own dreams and interests because their lives are no longer consumed by the unpaid work of caring for others. Instead, in practice, it means that mothers and siblings and aunts step in as full-time, round-the-clock, unpaid caregivers, and others who provide an occasional hour of help pat themselves on the back for "sharing the burden."

I am not aware of any country or culture that relies primarily on unpaid, non-professional care for people with disabilities in which the burden on individual family members, especially women, is lessened. If you can provide real, non-anecdotal examples of such places, I'd be happy to be proved wrong.
posted by decathecting at 10:18 AM on June 28, 2013 [9 favorites]


decathecting: In practice, it means that mothers and siblings and aunts step in as full-time, round-the-clock, unpaid caregivers, and others who provide an occasional hour of help pat themselves on the back for "sharing the burden."

This can't be emphasized enough. In my experience, this is sad but absolutely true.
posted by RedOrGreen at 10:37 AM on June 28, 2013 [2 favorites]


Oh, and also, I want to make sure to point out what a lack of professional caregiving (which is what a lack of public financial support for caregiving means in practice) means for people with disabilities. It basically means that they often can't lead normal, independent lives in which they pursue their own dreams and interests. Relying on the kindness of family members and loved ones for help means that you can't do anything for yourself, independently, without feeling like (and actually being) a burden on people you care about.

I mean, imagine if the only way you could get anywhere you needed or wanted to go was if you could find a friend or family member to give you a ride there, wait while you did whatever you're doing, and then give you a ride home. You'd feel like a mooch and an inconvenience, and you'd probably severely curtain your activities, limiting them to the bare minimum you absolutely needed, in order to try to avoid being a burden. You'd very quickly give up hobbies and socializing, and you'd probably not bother trying to get a job, since it wouldn't really be cost-effective or fair to have someone else sitting around all day waiting for you to finish working. Now imagine that you had to impose on your loved ones every time you wanted to shower or change your clothes or eat or go outside or read a book or watch TV or go to the bathroom or express a thought in words or do just about anything else that we all want to do every day. In short, your life would be limited to the amount of work you'd be willing to make for others. And you'd probably spend a lot of time feeling tremendously guilty and apologetic about the effect you have on their lives.

Prioritizing support for paid caregiving--including support for activities of daily life, work, and recreation--is what allows many people with disabilities to have normal lives in which they can be independent in the same way that every adult wants and needs to be in order to be self-actualized. It's much easier to feel okay about needing and asking for help when you know that helping you is what your helpers have chosen to do, and that they're compensated for it, and that helping you actually allows them to support their families. Demanding that people with disabilities rely on unpaid volunteers from "the community" in effect forces a lot of people to make everything they do in their lives a cost for the people they love the most. And that's an enormous burden to carry, and a severely life-limiting condition.
posted by decathecting at 11:53 AM on June 28, 2013 [16 favorites]


"Saying you study autism is like saying you study the world of non-elephant animals."

This quote is so absolutely ridiculous that I can't imagine why it was included in the article. If there was a shred of truth to it, how would we have ever gone about developing diagnostic criteria for Autism?

@cjc
"If you took that money and divided it up, you could pay people $55,000 a year to sit with each kid 24x7x365. That includes someone to watch them sleep. How can caring for an autistic child possibly cost that much??"

Caring for a person with a disability isn't simply supervising them.
In a typical classroom for a dozen special needs kids, you will have a teacher, 3 teacher's aids, a full time occupational therapist, physical therapist, speech-language pathologist and psychologist. You will have home/outreach workers, contracts with wheel-chair accessible bus drivers, leases on a building space, janitors and administration staff and costs, supplies, a huge budget for therapy related equipment, materials and tools, etc. And that's just the few hours a day for schooling.
Imagine a full-time scenario including these costs for a residential school. You can easily see how the insane costs are justified.
My Autistic daughter's early education cost $25k a year and that was for about 3 hours a day, 5 days a week at a time my yearly income was actually less than that. I thank my lucky stars each and every day that we live in an area that these costs are covered though provincial care, and am saddened for kids who aren't fortunate enough to access services like these where they live. What potential are we sabotaging by not providing these services for those in need?


@double block and bleed
Thank you so much for your post.
Moments like these define and make my day worth doing every day with my daughter. Just this morning as I was checking my email, she passed me a note (her primary way of communicating) which is now sitting on my desk here. It says, "Why is the lava in the motiens? and volcanos? like the lava is in the mountions in minecraft-pe. love, R" and we had a good time looking up how mountains and volcanoes function.
She is the most fascinating and brilliant human being I've ever had the pleasure of meeting.


@corb
"Maybe we could spend just a fraction of the money going into treatment and amelioration and put it into developing earlier tests, hopefuly in utero, for this kind of thing."

This suggests a whole lot. For what purpose and to what end?
posted by tenaciousmoon at 6:48 PM on June 28, 2013 [4 favorites]


As for my "Forget this guy" comment, I guess I just feel so frustrated that he's able to do things that my friends would kill for (honestly, if you could send their kid to a special school in exchange for a contract hit, they would go all Sopranos for you). It's not fair that it costs so much that someone making as much money as they do can't afford it, but dang, the things that they can afford would be a godsend to my friends.
I agree with the article, and I hate to act like the author doesn't have problems or a right to complain, but the problems he has are the problems that other families would love to deal with.
posted by domo at 2:18 PM on July 1, 2013


And I'm not speaking for corb, but it occurs to me that there could be some prenatal therapy (folic acid, anyone?) that could help if you knew early. And yes, a disabled child is an expensive child. People abort all the time because of financial concerns. They shouldn't have to, but that is the country we live in. Until we step up and ensure that all children are cared for, cost is going to be a factor in choosing to reproduce.
posted by domo at 2:23 PM on July 1, 2013 [1 favorite]


> As for my "Forget this guy" comment, I guess I just feel so frustrated that he's able to do things that my friends would kill for

And him and your friends are all unable to do things that many other parents are able to do. And there are things that they can do that parents of children with medical special needs can't do. It's not a contest.

> it occurs to me that there could be some prenatal therapy (folic acid, anyone?) that could help if you knew early

Folic acid might be helpful, but you need to take it before you get pregnant. As far as I know, there is no prenatal therapy for treating autism.
posted by The corpse in the library at 4:36 PM on July 1, 2013 [1 favorite]


Folic acid might be helpful, but you need to take it before you get pregnant. As far as I know, there is no prenatal therapy for treating autism.

Now. Surely prenatal detection would be part of developing prenatal treatment.
posted by spaltavian at 6:30 PM on July 1, 2013


I'm as pro-choice as you can get, including for choices I wouldn't personally make, but it seems rather rude to come into a thread about autism on a site where you know there are members who have autism, and parents of children with autism, to advocate for taking money away from treatment and using it for testing "hopefuly in utero."

I have a cousin who is raising a severely autistic child, a good friend who is currently facing the fear that her child might be autistic, and an adult friend who has never had a relationship and will probably never have one. I can see firsthand how awful, how expensive, how much it has impacted their lives. I also remember the years when they had no idea what was going on and that was scarier than everything else.

I advocate for testing "hopefully in utero" for multiple reasons. First is indeed that I think people should be able to make informed choices about what kind of children they bring into the world - particularly if they do not have the financial resources to raise a child to a good standard of care. I think that one of the most awful things about autism is the way it springs up on parents once the child is already three or four years old and it is impossible to evaluate the situation impartially. It's a nasty surprise for parents - no matter how great it can be for some people to raise autistic kids, or how loyal or fun some autistic friends and children can be, I don't think any parent gets that diagnosis and thinks, "Yes, woohoo!"

The second is that I think that for those who choose to have autistic children, knowing what the situation is, they will be able to start on treatment from the moment the kids are born. They might be able to better know how to reach or deal with them, or start exposing them and teaching them the behaviors they want, not simply through example but through explanation. And that might shorten or slow down the developmental delays.

Third is that if indeed it turns out that tests can be developed in utero, and it can be found that it is something about the genetics or environment that causes it, people can start actively avoiding those things or start screening for those genetics or compensating for those factors. Again, I could be wrong, but I don't think anyone deliberately seeks for an autistic child, and it would be great for things to help those who for whatever reason (my family member is Catholic, but there are other reasons) cannot or will not take other choices, but would prefer not to have an autistic child.
posted by corb at 8:31 AM on July 2, 2013 [2 favorites]


@corb
"I can see firsthand how awful..."
Firsthand, really? Awful? No, never. Just wow.

"I think that one of the most awful things about autism is the way it springs up on parents once the child is already three or four years old and it is impossible to evaluate the situation impartially. It's a nasty surprise for parents "
Again. Awful?
Springs up? No. The child needs to be 3-4 to be able to get a diagnosis, but the parent is well aware that something is different from the get-go.
Nasty surprise? Are you deliberately attempting to be outrageously offensive here?

"no matter how great it can be for some people to raise autistic kids, or how loyal or fun some autistic friends and children can be, I don't think any parent gets that diagnosis and thinks, "Yes, woohoo!"
Actually, yes I did. The diagnosis of Autism was so much better than all the other horrible things that I was imagining. There is therapy and resources available, it is not a death sentence.
My Autistic daughter has an above average IQ and can simply do and see things that neuro-typical people can not.
Her mind is different, not damaged.
She has as much right to be here as you do and you way of referring to persons with ASD as 'others' who's very existence should be in question is really offensive.

"And that might shorten or slow down the developmental delays. "
Autism is defined in the DSM-IV-TR as exhibiting at least six symptoms total, including at least two symptoms of qualitative impairment in social interaction, at least one symptom of qualitative impairment in communication, and at least one symptom of restricted and repetitive behavior. Not progressive developmental delays.

I suggest that you do a lot more research on Autism before you carry on with your misconceptions and outright fear-mongering. It is clear that you don't know a lot about it and considering that you have people in your life with ASD, you would greatly benefit from some self-education. Actually, what I suggest you do is start looking for stories that real-life Autistic adults put out about themselves. Start with Temple Grandin, and go from there.
What you will find is that people with ASD don't think of themselves as disabled or damaged or delayed, they just want their many strengths to be recognized, their potential actualized and to experience true acceptance from people such as yourself.
posted by tenaciousmoon at 11:03 PM on July 2, 2013 [4 favorites]


> First is indeed that I think people should be able to make informed choices about what kind of children they bring into the world

That's a sweet optimistic fantasy that is shared by most people at times, but no-one gets a guarantee about the child they get, regardless of the situation around provenance (yours, your partners, from adoption, from foster care, etc.)

You can have a totally medically "normal" kid who breaks your fucking heart all the time, you can have a profoundly "not-normal" kid who makes disability accommodations utterly inconsequential, or you can have anything in between.
posted by desuetude at 12:22 AM on July 3, 2013 [6 favorites]


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