kitchen table math, the sequel: education & mortality (& being the parent of an autistic child)

Monday, July 21, 2008

education & mortality (& being the parent of an autistic child)

Prior research has uncovered a large and positive correlation between education and health. This paper examines whether education has a causal impact on health.

[snip]

This paper has shown that there is a large causal effect of education on mortality. While GLS estimates suggest that an additional year of education lowers the probability of dying in the next 10 years by approximately 1.3 percentage points, my results ... show that the effect is perhaps much larger: at least 3.6 percentage points. Moreover there is a direct effect of compulsory schooling laws on mortality during adulthood: one more year of compulsory schooling decreased mortality after age 35 by about 3%.

[snip]

To better understand the impact of education, I calculate how this effect translates into life expectancy gains. I find that in 1960, one more year of education increased life expectancy at age 35 by as much as 1.7 years (using the OLS estimate). This is a very large increase.

[snip]

This evidence that education increases life expectancy implies that the returns to education, measured only in terms of earnings increases, substantially underestimate the true returns to education.

The Relationship Between Education and Adult Mortality in the United States
Adriana Lleras-Muney
January 2004


Reading The Race Between Education and Technology has led me to think about the relationship between education and being the parent of autistic kids.

Jimmy is 21. When he was diagnosed, no one knew anything about using meds in autism, and everyone was against it. Parents were horrified by the idea, and psychiatrists in Los Angeles routinely told us there were no medications that could treat the "core symptoms" of autism. I remember going to all the parent meetings & hearing that: can't treat the core symptoms of autism.

One shrink in particular ticked me off. I heard him speak in someone's living room. There was nothing medicine could do, he said confidently; the core symptoms were untreatable. News flash.

I didn't like him. I didn't like the cowboy boots he was wearing, I didn't like his twitchy manner, and I didn't like the way he slouched in his chair. I especially didn't like his air of certainty, and I was appalled by the fact that he appeared to consider himself cool. If you're going to tell me there's no hope, don't be cool while you're doing it.

How did this "core symptoms" business make sense, anyway, I wanted to know. Granting that severe mood swings and 4-hour tantrums aren't core symptoms of autism, wouldn't it be a good thing for a child not to have 4-hour tantrums?

Ditto for being unable to sleep more than 4 to 8 hours a night at an age where other kids sleep 12. Yes, sure, raging insomnia isn't a core symptom of autism, but so what? Is raging insomnia good for a 4-year old with autism?

Amazingly, I once had a doctor tell me that raging insomnia was perfectly fine for autistic kids. "These children don't need a lot of sleep," he said.

I thought that was a crock.

I was right. I was so right that in 4 years' time the twitchy psychiatrist in the cowboy boots, who had become Jimmy's doctor when our insurance stopped covering the Encino psychiatrist we'd been seeing, did a fantastic job treating Jimmy with meds.

His one truly brilliant move, when we came to his office panicked because a year of Risperdal-created peace was unraveling, was to say to us, "I'm all out of tricks, my black bag is empty. But sometimes just getting more sleep can help."

He prescribed trazodone and Jimmy had a breakthrough: in mood, in behavior, in functioning. And in sleep. Sometimes a twitchy guy wearing cowboy boots is your kid's future best friend.

That was our second medical breakthrough.

Our first had come the year before, when I was pregnant with the twins and Ivar Lovaas had told Ed we needed to place Jimmy outside the home. Jimmy was 7 years old. "You're going to have two other children to think of," Ivar said. "You have to consider your whole family." He wasn't alone in this view. Jimmy's school principal dropped broad hints that the time had come, and our SPED attorney asked if we wanted to request a residential school.

My therapist asked me, point blank, "How would you feel if Jimmy killed one of the babies?"

"Jimmy isn't going to kill one of the babies," I said. When I left her office, I called my best friend from the pay phone in the hall. "Are my friends saying Jimmy will hurt the babies?" I asked. "Are you all afraid to tell me?"

Her voice was so gentle and kind when she answered. I get tears in my eyes writing this now.

"No," she said. "No one is saying that. Everyone is incredibly worried how you're going to manage Jimmy and two babies. But no one is saying Jimmy will hurt the babies."

I never spoke to my therapist again.

Things got worse before they got better. The Northridge earthquake happened in February just after we'd begun construction on an extra bedroom; the house was a shambles and we had construction workers everywhere -- construction workers who were feuding with each other on site, to boot. The pregnancy had been high risk to start and within a few months most of the bad things that can happen to a high-risk pregnancy did happen. By the end of the 29th week I was in labor and in the hospital mainlining magnesium sulfate. We were facing the possibility of having three disabled children to care for instead of just Jimmy.

We had one person left to turn to. Our doctor, the one in Encino.

That doctor had told us there was a new drug for schizophrenia coming on the market that he wanted to try with Jimmy. Risperdal. It was different from the old antipsychotics, he said. By the time Ed saw him again, with me in the hospital and Jimmy out of control at home, Risperdal was available and the sales reps had made their rounds. Our doctor ransacked his office, pulling out every sample packet he could find and handing them to Ed, who stuffed his pockets full and carried the rest out in his hands. He drove straight to Osco's to fill the prescription before going home to Jimmy and my mother.

The Risperdal worked. With his first dose, Jimmy calmed, the tantrums dropped to nothing, and for the first time in his life he had a bedtime. Ed could read him a story and tuck him in bed and he stayed there and he slept.

Later on I told this story to one of the founders of the National Alliance for Autism Research, who was himself a psychiatrist and the father of an autistic child. He frowned and looked puzzled for a moment, then said, "Jimmy had to have been one of the first children in the country to take Risperdal."

He was.

Risperdal is a tough drug to take; it's nothing to fool around with. It is also a miracle drug, or was for us. On October 6, 2006 it became the first drug to be approved for the treatment of "irritability associated with autism." I believe that Risperdal, along with the other atypical antipsychotics, has produced a new generation of young men and women Jimmy's age who are living in the community instead of in back wards, in restraints, which is where Jimmy was headed.

Claudia Goldin and Lawrence Katz's observation that educated workers are early adopters has stayed with me. With autism, Ed and I have been early adopters.

Being an early adopter in the realm of psychotropic medications administered to your 4-year old is different from being an early adopter of an iPhone. We knew no one who was using meds, and we knew many who thought we were crazy or worse.

To be an early adopter with the big things, you have to be unshakably confident in your ability to listen, read, and think. You probably have to be as confident as the shrink in the cowboy boots, who turned out to be confident for a reason: he was good at his job. He didn't know what he was talking about with the core symptoms business; that was malarkey. But he could look at a child, talk to the parents, prescribe a medication off-label, and make it work. He was an early adopter, too.

Risperdal saved Jimmy's life. When Jimmy was 4, the social worker at the Regional Center told me, "I can see that you and Jimmy have a very close relationship. But in a few years, you will come to me for a placement."

I didn't, but she wasn't wrong. Three years later, the experts in our lives agreed that it was time.

That Jimmy's life turned out so differently is a tribute to education: to the education of the psychiatrists we've worked with for nearly 20 years, to the education of the teachers and behavior analysts who taught Jimmy and us, to the education of the research scientists in their labs, and, not least, to the many years of education Ed and I had when we were young.

Being educated ourselves, we were able, often enough, to know a good idea when we heard it.

We could spot malarkey, too.

13 comments:

Maddy said...

Thank you, thank you , thank you for not hearing 'them' and listening to yourself.

What a good sharer you are, pass me a hanky.

Tex said...

So I guess I’m not the only one who finished reading this post while wiping away tears.

Education and mortality. I’ll never think about these two together in quite the same way.

Catherine Johnson said...

oh thanks, you guys

it's all true -- it's why "The Race" is so real to me

there's no question I've lived it

I wish I could write about it better...and maybe some day I'll be able to.

In some ways I think the most important thing education did for me was to give me courage. If I'd read as much as I could understand about a topic, and consulted people who knew what they were talking about, and thought it through ---- I could act, and I could act even knowing that my knowledge and comprehension were extremely limited.

Anonymous said...

Wow. I think I'll just quit complainin' right now.

We really are alone in these endeavors, aren't we? And because the decisions fall on us and us alone, and with so much conflicting information, I actually can see why some people do nothing. The shaming from others would be enough for many of us.

I love that picture. I hope some young parents of kids like Jimmy get a chance to see this post.

SusanS

concernedCTparent said...

Amazing. The picture. The story. Your writing. Your courage. Everything.

Catherine Johnson said...

I think I'll just quit complainin' right now.

lolll!!

I used to complain about THAT --- we were always the family who made everyone else feel better about their own crappy lives!

I remember one time, Ed and I had Jimmy in a class at the local public school, and another family came in. They were obviously still in a very raw emotional state. They spent a few minutes watching Jimmy, while trying to hide the fact that they were watching Jimmy!, with a growing look of horror.

Then they kind of perked up.

They left feeling much better about their own kid --- !

Catherine Johnson said...

Isn't that picture fantastic! The head of SPED here sent it----!

I love the look on Chris' face. It makes me think he'll be able to handle dealing with two disabled siblings after we're gone.

I don't think we've been alone at all ---

I'm pretty sure that a REALLY severe disorder, the kind of disorder everyone can see, is easier to deal with than the things you're dealing with (I'm talking to Susan S, one of whose sons has LD).

Both my sisters had kids with much milder issues, and both of them had a harder time of it than we did. Mild disorders, from what I've seen, can be awfully isolating.

When your child is closer to typical, nobody "gets it," partly because the child LOOKS good to the untrained eye.

So....my impression is that parenthood with high-functioning kids of any kind can be very hard. (I hope that's not insulting to anyone -- if it is, I take it back --- )

The main place where we've been alone (which you've just mentioned) is in the decision making.

Things are a bit different today, because more is known. But when Jimmy was diagnosed nobody knew anything about medication.

In that situation, it has to be the parent who decides, and who decides "alone," taking full responsibility for the decision. To a large degree, it has to be the parent who pushes for unconventional treatment.

This is what I mean when I say that the Regional Center social worker "wasn't wrong." She accurately predicted the normal developmental trajectory he was going to have without a medical breakthrough.

But in order to take advantage of a medical breakthrough, Ed and I had to be early adopters, and we had to find doctors who were willing to help us be early adopters, which is another challenge.

As odd as it may sound, I think my experience raising Jimmy makes me understand how highly educated workers make companies more productive. A well-educated worker isn't just an early adopter, he's got a good chance of being a smart early adopter.

Catherine Johnson said...

Come to think of it, "educated early adopter" explains everything I've done with C's math & general afterschooling.

My discovery that he was failing math at the end of 4th grade put me in a similar situation to the one I was in with Jimmy (and with Andrew now).

I knew virtually nothing about math education and there was (and is) a huge array of conflicting expert opinion.

The past four years have been an exercise in coming to grips with education, education politics, learning theory, math (and more math), etc. --- and in figuring out who to listen to.

The whole "afterschooling" saga has been amazingly similar to what we went through with Jimmy.

Let me put it this way.

If you had told me 5 years ago that C would be attending a Catholic high school, I wouldn't have believed you.

Mama Mara said...

We've been fortunate -- probably thanks to early adopters like you. Our psychiatrist has always said that, while there's no such thing as a med for autism, medication can treat symptoms. My son, who turned 12 Wednesday, is struggling with insomnia and rages after a few years of respite thanks to medication. Now we're back on the antipsychotic drug merry-go-round, trying to find a med that will bring him back to us.

Your story reminded me that these things take time. Thank you so much.

Catherine Johnson said...

You know --- one of my favorite stories, which relates to your situation now, also concerns the shrink in the cowboy boots.

Jimmy drove the guy NUTS. He was very tic-cy (the doctor, I mean, not Jimmy so much) and his office was tiny, and he just could not deal with having Jimmy, who was big, loud, and hyper, in his office. Oh gosh, he used to suffer, sitting there trying to maintain his composure while our kid hyperactivated the man's startle response. This guy was an outlier: his nervous system seemed to have no ability to habituate.

Good thing he was the doctor, not the parent!

Anyways, we went to see him one last time before we moved. We told him we figured now that we had 3 kids and 2 autism diagnoses, it was a good time to pick up and move 3000 miles across the country.

All of our other doctors would have found that pretty amusing, but this guy's nervous system was so overwrought he just looked slightly sick at the thought of what we were getting ourselves into. (He was right.)

We talked for a while, and at the end of the visit, just before we left, he said, "You know, I've been watching Jimmy this half hour."

Neither of us had noticed this.

Then he said, "Some of these kids, after they go through puberty, get a lot better. I think Jimmy's going to be one of them. I can't say that for sure. But I think so."

That was a gift. We took it in exactly the spirit he offered it: no guarantee, but hope. Hope is good.

We lived on that hope for what seemed like years, and the doctor turned out to be right.

Jimmy is a Good Citizen. (Did I say that in the post?) That's what I call him now. He's a solid, good guy people like to have around.

I bring this up because at the time that our doctor told us that "some of these kids get better," he was contradicting what everyone else had said. We'd been used to hearing the opposite, which was that a fair number of autistic kids develop seizures during adolescence and deteriorate.

In fact, Jimmy did develop seizures a couple of years ago, but he didn't deteriorate at all. He hasn't had a seizure or anything like a seizure since he started taking Depakote. (Massive weight gain from meds, so that's another ISSUE, as Carolyn used to say....)

Then just the other day someone mentioned to me in passing that "Autistic kids get calmer after adolescence."

Is this now understood to be the standard developmental trajectory?

I don't know, because I've been so focused on getting C. through middle school that I've lost track of the autism world.

Still, my feeling at the moment is that age 12 and thereabouts may be the most difficult period for these kids. Andrew has been IMPOSSIBLE for several years now (not this summer - we've had "clicker magic" around here). He was much easier as a little guy.

From afar, I'm going to guess that if you've had several years of reasonable calm, you'll be able to get him back on track.

It does take time, and it's incredibly worth it in the end.

Jimmy isn't where we wanted him to be, but he is a great, great kid. Well, no: he's a great young man.

Here's something kind of neat. For years people have asked me, "How's C? How is he handling it? How does he feel?"

People have always assumed that C. must be suffering & possibly emotionally damaged by having two autistic siblings.

I don't think that's the case, though I always tell people I have no idea what the answer to that question is, which is true. My line is: I'll find out how damaged he is when I pay for his psychiatrist 15 years from now.

My gut, though, is that C. isn't any more "damaged" by his funky family than other kids are by their funky-normal families. I believe he'll have emotional ISSUES as a result of his brothers & our parenting of his brothers, but that he'll also have emotional strengths from the same.

Part of the reason for this is that Jimmy was his big brother by 7 years. So for quite a while Jimmy was bigger & smarter than C because of the age gap.

Then, by the time C. was old enough to understand that he was smarter than his older brother, Jimmy had become the sweet guy he is today -- so C. hasn't been constantly upstaged by Jimmy & the household hasn't been in the state of crisis we were in when Jimmy was little.

(Andrew's another story! He's going to have the spotlight on him now, which is good for everyone. He's had to wait too long --- )

Ironically, Jimmy has been the "therapy" C. needed for having an autistic brother like Jimmy.

This is a long, round-about way of saying: HANG IN THERE.

Your son will find his bearings again.

Catherine Johnson said...

I still can't express this as I'd like to....but our experience with this doctor is an example of the value of education.

In fact, this doctor was some kind of genius; he was amazing.

He was also dead wrong on the "can't treat the core symptoms" business.

My liberal arts education gave me the background knowledge and the reasoning ability to "stand up against" a brilliant physician who had parents hanging on his every word as he told them things were hopeless.

When I say "stand up against," I mean "stand up against" him mentally. I thought he was wrong, I had some confidence in my ability to make that judgment (and some ability to "judge my judgements"), and I kept looking.

That's what mattered.

My liberal arts education allowed me not to take no for an answer --- and, at the same time, not to be swept away by the many, many miracle cures for autism we could have mortgaged our house to buy.

This is a crucial second benefit of a good education: we didn't make a lot of expensive mistakes. When you have an autistic child, or a child who is seriously ill, you're desperate, and you're besieged by people with treatments and miracle cures. When you see, on television, a formerly autistic person who has been cured by auditory integration training, and you have almost no possibility of being able to afford auditory integration training yourself....let's just say that the doctor who diagnosed Jimmy spent a long time warning us about spending ourselves into the ground to buy treatments that wouldn't work.

Our educations got us through, and continue to get us through to this day.

When you have to navigate a realm like autism, a good college education is an enormous advantage.

Catherine Johnson said...

We did actually take Jimmy to see the auditory integration person who was working in L.A. God only knows where we would have gotten the money to pay for it.

As it turned out, Jimmy was so out of control that they said it would be impossible to do the treatment with him.

Apparently Jimmy had some starter horse sense, too.

Catherine Johnson said...

I read a cool thing on an Amazon blog yesterday, while I was cruising books on productivity, time management, and organization instead of revising my book proposal.

One of the authors said there are two mistakes people make when pursuing their aspirations: quitting too soon, and not knowing when to quit.

I love that.

With Jimmy and Andrew (and Chris), my liberal arts education gave me a lot of ability to avoid those two mistakes.