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The Economics Of Autism

All three of our boys, twins age 5 and a 3-year-old, are autistic. Anecdotally I hear I'm only two children away from establishing some sort of world record, as I was told that the O'Donnell family featured earlier this year on Extreme Makeover Home Edition with 5 out of six children on the autism spectrum is the most on record in a single family in the United States.

If the financial crush of providing treatment to a single autistic child is staggering (estimates are that it will cost over $3 million dollars per child over their lifetime), imagine my dilemma. There's a variety of services and programs available to autistic children none of which are covered by the vast majority of private health insurers. There are intensive therapies with scientifically proven results available, again not covered by insurance. Do you want to know who our system in the United States has entrusted (or rather mandated) to be responsible "solving" the autism problem?

The public education system.

I'll give you a moment to ponder the implications of that observation...

The people who for a generation have shunned effective, disciplined study of the basic building blocks of vocabulary (read phonics) in favor of touchy feely, feel good approaches that failed our children are the gatekeepers to treatment to the fastest growing childhood epidemic in the world. I'm severely generalizing here because no two autistic children have the same needs, but by and large what autistic children need is one on one attention in learning environments, and a structured approach to all facets of their work on verbal and non-verbal skills. Structure, rigor, discipline, and individual attention are hardly qualities anyone associate with the public education system.

Just as it is with general education there are special education systems that do outstanding work for children on the autism spectrum and there are systems that are horrible. The vast majority fall in between, what we would think of as "average." The problem is that where most general education students get a respectable education in such settings, autistic children in these "average" programs (in many cases) are for all intents and purposes untreated.

To get the services they need families, if and when they figure out how the various laws work, must either relocate to states (or other school districts) who offer rigorous, individualized programs that have a history of success, or fight (and often sue) their current school system to get the services the laws on the books say that their children must receive. School districts have a vested financial interest in NOT providing the treatment programs that have a history of success because most of them are expensive, manpower intensive systems. There are any number of strategies and dodges they use to not provide services, but chief among them is that they prey (many would say deliberately) on parents who do no know or understand what the IDEA (Individuals with Disabilities Education Act) requires and/or the in's and out's of FAPE. It takes a while of being in "the system" to even begin to understand where and when it fails children, even if you can viscerally tell that it is failing. Many, many children never get the services they need because it take strong, almost crusading, parents to fight the schools for needed services - there's no magic pot of money for this stuff so it comes right out of the general education fund. The FAQ at Wrightslaw provides a case of a dyslexic child which mirrors exactly the kinds of roadblocks parents of autistic children face.

It's important that you remember all of this, there will be a test on it later today in Part II...


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Comments (29)

Wow, a surprisingly persona... (Below threshold)

Wow, a surprisingly personal post, Kevin. I never realized that about your children, and-especially considering recent events- provides valuable insight into families that have autistic children in them and the kind of care they actually receive. I respect you even more knowing this.

You are a greater man than many, and deserve recognition as such.

I see the same problem with... (Below threshold)
epador:

I see the same problem with local schools systems and ADHD. Their current approach is to tell the child to learn self control and punish them if they don't. I can't even get the teachers to fill out Vanderbuilt questionnaires.

Slightly on topic, I've see... (Below threshold)

Slightly on topic, I've seen studies linking children of two left-brained parents (engineers, accountants, logical people) with a higher rate of autistic children.

Another story on Autism by "Elizabeth Greene", who raised a child (now 27 years old) who was diagnosed as Autistic
http://www.randomhouse.ca/features/droppedthreads/story_greene.html

Epador, on the contrary, I ... (Below threshold)

Epador, on the contrary, I believe their current approach is to drug the kid into oblivion. I was diagnosed with Attention Deficit Disorder when I was in the 7th grade (ADD, not ADHD), and was put on Ritalin. I hated it. Many wail about children getting "addicted" to Ritalin, those accusations are unfounded. I would often forget to take Ritalin, and I hated taking it. The amount I was given caused me to behave like a walking zombie, I had almost no appetite, I just kind of shuffled around without much energy. (I'm 25 now, gainfully employed as a Merchant Marine Engineer, I just stopped taking Ritalin in high school, and learned to control it on my own).

The faculty at one school t... (Below threshold)
jim:

The faculty at one school tried to put my little brother on that Ritalin shite. Fortunately my parents were aware enough to switch my little brother to a better school instead.

Some people can benefit from medication...but it's my opinion and anecdotal experience from family and friends of mine, that psychiatrists over-prescibe meds on the order of 95%. And worse, offer no solution but just continuing the meds.

I can see meds as being useful as a crutch, on the way to helping the person heal. But almost all of the time, it seems they don't feel like bothering to get the patient healed up, and just keep 'em on the crutch.

A commenter at the end of t... (Below threshold)
kim:

A commenter at the end of the Collected Works thread thinks Cho was autistic. I'm dubious, but ignorant.

Autism? Look to the immune system. Schizophrenia, too.
====================================

For millions of years our i... (Below threshold)
kim:

For millions of years our immune system had a fairly constant variety of stresses. Ten thousand years ago, when we domesticated plants and animals we became subject to an increasingly complex variety of stressor agents, read other small members of our ecosystem AKA germs, and our immune system is still learning to cope. Remember Diamond's point that for millions of years, our species selected for intelligence; in only the last ten millenia, it has selected primarily for disease resistance.

It isn't the mercury, but it might have something to do with the way we've warped herd immunity with vaccinations.
============================

One of the most frustrating... (Below threshold)

One of the most frustrating things about autism for me is dealing with the school district and other government entities who have taken on the job of "helping" autistic children. Frankly, the best that they've got to offer sucks. They know it and many of them don't care. Those few who don't can't offer you anything of any use to your child because their hands are tied by stupid laws and ignorance of what is available.

Can you imagine sitting across the table from the people tasked with deciding your child's educational destiny and realising that they haven't got a clue about what therapies are available?

I know of a school district... (Below threshold)
kim:

I know of a school district which is struggling with the issue in a slightly different fashion. Their program for autistics is so good that it is attracting immigrants, and by that I don't mean alien ones, but domestic ones from elsewhere in the US. Of course, they are having cost issues, with the balance so far among the taxpayers such that pride in the program is allowing the expense. So far. Of course, this is probably a diminishing return sort of thing, and with much more success, it might become insupportable.

One thing is for sure. We've got to figure out causation for the autism spectrum. The growth curve for the dysfunctional side is ominous.
========================

In addition, just throwing ... (Below threshold)
goddessoftheclassroom:

In addition, just throwing ausitic children into a regular class without adequate support because it's "the least restrictive environment" doesn't help anyone, including the other kids distracted by the austic's child's behavior. Schools are not equipped to be treatment centers. This is definitely an area for insurance reform.

Re ADD and ADHD: there are new medicines available that do not have the zombie effect. My son was diagnosed with ADHD after several frustrating years (his symptons were atypical--his hyperactivity was mental, not physical). Now he is able to focus in class, and he's far more successful.

Epador, I'm OUTRAGED that your child's teachers aren't complying with completing that questionnaire. DEMAND that they do!!! DEMAND that the principal DIRECT them to do so--if they don't, they can be fired for insubordination.

As a teacher, it infuriates me that some in my profession don't do what they're supposed to.

Look into support groups in your community as well as online--others may be able to help you work through the system.

Kevin, my heart goes out to... (Below threshold)
Joe:

Kevin, my heart goes out to you. I have two boys who by the grace of God are normal, but I also have two friends that have autistic children. One of them is well off enough that he COULD fight the school system and state social services to get them to follow the law. He has an autistic daughter who is barely functional. BUT after fighting it the system for several years for all his kids (He has 13. Two biologic, 11 adopted) he just said screw it and home schooled. (After several run-ins with social services and lawsuits against the state where he prevailed EVERY TIME. (I did say he was well off.) Entrenched bureaucracy knows no bounds or shame.)

My other friend with an autistic child (a boy) and is not well off. He fought with the system also (no lawsuits, just long discussions) and finally, at his own expense, hired a firm (Minerith-Meyer) that had a specialized, one-on-one program for autistic children. I think everyone was amazed at the results of the program. (Like you point out the needs and the progress of each autistic child are different). But several years of that just about put him under financially and he had to drop it.

None of the above to start a debate, just to say I am only peripherally aware of what you are going through and with what little I know about autism, I hurt for you. And I pray that you get the help and services you need for your children. And that God grants you the strength to care for them.

My daughter lives with Aspe... (Below threshold)
al:

My daughter lives with Aspergers. We're lucky in that the local school district has an excellent special ed program. In fact it was a teacher in the developmental preschool that suggested we test for Aspergers as she recognized many of the characteristics. 12 years later I have a vibrant, outgoing, intelligent high school girl. She still struggles with social skills but gets help with that. She has a combination of mainstream and sped classes that was designed for her. I think she's going to turn out just fine.

We've had our share of issues with some teachers - they just didn't want to be involved with a sped kid. We'd talk with Lisa's sped co-ordinator and the principal and the teacher would become very cooperative. We also had some help from my sister-in-law who's a sped teacher and knows all the rules.

Be strong. They are your kids. You're fighting for them.

Raising a child is hard eno... (Below threshold)
_Mike_:

Raising a child is hard enough. I can't imagine that the additional challenges that a parent of a child with special needs must face.

If nothing else is, this is a prime example of why a voucher system is needed. Obviously, there are needs that autistic children have that government schools are ill-equipped to met. Why shackle the parents with forced funding of a school that doesn't meet their needs ?

This is the reason that government controlled economies work so poorly (and yes, our educational system is a government controlled economy). The market isn't allowed to react to changes in needs without involving some bureaucracy.

My best wishes, Kevin, for finding a palatable solution for your boys education.

I have come to thoroughly d... (Below threshold)

I have come to thoroughly despise that "least restrictive environment" requirement. For us it has meant that we get offered the standard cookie cutter option that is offered to everyone regardless of the details of the individual case.

The the only successful lo... (Below threshold)
epador:

The the only successful local autistic kids I've seen are home-schooled. It's a tough burden on the family. But less than watching the kid fail and trying to fight the school. Its a hard argument between society assisting families like Kevin's at great cost or the family going it alone at great cost. Our public schools are barely treading water as it is. If they could only come out and say: "If we do what your child needs, we'll have to go to 40 kid classes, close down sports and music programs, and start charging everyone for paper and pencils." But instead it comes out "Your kid only has a behavior problem."

Tho I've raised two kids with ADHD, I'm the primary care doc for the ones I'm complaining about. You should see the letters and hear the conversations I have with the local schools. Their side is that they are so underfunded they can barely afford to school the folks without special needs. The Oregon Legislature is notorious for this.

Using drugs sucks, but for the most part I do so with the kids' participation. If they think its helping and want to continue, fine. If they hate the drug, I stop unless they have a co-existent issue (like aggressive and dangerous behavior), or they refuse to take responsibility to work on their disability and are failing miserably (usually a co-existent depression). What gets real tricky is when I suspect either the kids or parents are diverting the meds.

Kevin, you make a good poin... (Below threshold)
Jim:

Kevin, you make a good point about the education system and autism. I myself was diagnosed with Asperger's less then a year ago (I'm 23 now). The tests that were performed to diagnose me with AS were pretty much the same as the one's performed by public school administrators. The doctor who diagnosed me mentioned they should have noticed the issue. Since then I have diagnosed with other related/semi-related issues.

Best of luck with your family.

I am a home school Mom, and... (Below threshold)

I am a home school Mom, and I know that I have information that could help you. Please e-mail me and I will let you know my story.
Thanks fo sharing yours, and remember you have many in your support network.

Ditto Paul, prayers from he... (Below threshold)

Ditto Paul, prayers from here.

I have a 16 y/o AS boy. I have to say that (after a miserable false start due to an incompetent school principal) the public school SPED folks have done my son well.

The difficulty is getting a reliable teams of professionals (psycopharm doc, psychologist, therapist, teachers) to communicate directly and regularly, with the child and each other. We consider ourselves fortunate that my son's special ed school is staffed by true believers and dedicated professionals who "get" my son, sometimes better than I myself do.

Kevin,We are the p... (Below threshold)
Mike:

Kevin,

We are the parents of three children; our middle child, age 4, exhibits many traits that are consistent with Asperger's.

He did not talk until he was 2 1/2, he exhibited clumsiness and hesitancy consistent with sensory integration disorder (which we have largely remedied through aggressive play and PT), and he also exhibits a number of obsessive and repetitive behaviors.

He is also extremely intelligent - he enjoys listening to jazz, he can already play notes on my trumpet, he knows the alphabet and numbers and a few simple words, he enjoys counting and doing simple math, and his talents at building with Legos and designing complex wooden train track designs are nothing short of remarkable. He is cute, sweet, funny, and generally well-behaved away from home.

But at the same time, he cannot use the potty. He still wears a diaper and often deficates in the bathtub during his bath.

We have learned to cope, but the stress and worry are taxing. It is so difficult to realize that your child is talented and smart and yet still wears a diaper and occasionally runs uncontrollably in circles around the house.

He is seeing a therapist now, which we are mostly paying for out of our pocket. He attends mother's day out three days a week and has adapted well to it and enjoys it very much. We are hopeful that school will not be a great challenge, but of course we are concerned.

Friends of ours have a 12 year old with severe Asperger's. He was managed in special ed through a rigorous behavior program with very narrow boundaries. Then they moved out of state. When they consulted with the principal of the new school about how their son was to be handled, the principle looked horrified - "If we did that, the TV news would be here and we'd all get sued!" So their son was out of control, his performance and behavior deteriorated to the point where they were forced to move back here and re-enroll him in his previous special ed program.

The problems, as well as the solutions are out there. None of it is easy. Kevin, I'll keep you and your family in my prayers.

Hi - new to your site - may... (Below threshold)

Hi - new to your site - maybe you are close to a record. I was wondering if you were familiar with 'Freaks, Geeks and Asperger Syndrome?' They're a family with several children on the spectrum too.
Best wishes

Thanks for the entry from t... (Below threshold)
kim:

Thanks for the entry from the frontline combat journal, epador.
======================================

I knew an O'Donnell family ... (Below threshold)
anonymous:

I knew an O'Donnell family in the 1970's. They lived just north of San Francisco. She was a nurse, and they had been unable to have their own children, so they adopted. Then, as frequently happens she became pregnant and gave birth to their first son--born blind and autistic.

About two years later, she gave birth to their second son--born blind and autistic. They later adopted a little girl (Vietnamese, I believe). You may want to forward this information to the O'Donnell family of today. It might help researchers to undersand. The boys must be in their early fifties, or late forties by now. Hope this helps in some way.

I used to be the step-fathe... (Below threshold)
Dodo David:

I used to be the step-father of a boy who had a severe form of autism. My ex-wife and I didn't have a problem with the local school district. Instead, we had a problem finding someone willing to baby-sit an autistic child.

What really stresses the parents of autistic children is the inability of the parents to get away by themselves for a few hours, due to a lack of people willing to baby-sit autistic children.

It is also difficult for parents to find a church that can handle autistic children.

Sadly, it is not unusual for autistic children to be treated like lepers . . . even by Christians.

Dodo David:I don't... (Below threshold)
transitionteacher:

Dodo David:

I don't know where you live, but here in So Cal we have a program called hospice (not the medical kind), and when the families of those with disabilities call a few days in advance their hospice person will come and spend time with their son or daughter and let them get out for the evening, sometimes for a whole day. 2 of my assistants do hospice care after work for a couple of hours in the evening and most of the weekend. It is normally a service provided by regional center, or sometimes a private agency that the regional center will fund. I teach adults with moderate to severe handicaps which includes many students with autism. They are now at the end of their public education. Some of their stories have been very successful, but others, sadly, have not. As many have said, it depends on the teacher(s)/support that they have received over the 22 years that they are able to stay in the school system.

Medicaid (child's income on... (Below threshold)
Bill:

Medicaid (child's income only is considered, not parents') through program called CLASS (Community Living Assistance and Support Services) administered through the State by Easter Seals or Cerebral Palsy Society or othe similar group - This program provides upto $63,000/year to qualified individuals - The agencies administering may be different from state to state....

Kevin,I have a 17-ye... (Below threshold)
Webster:

Kevin,
I have a 17-year-old boy and a 15YO girl both with autism. Not Aspergers. For your children's and your sakes, I hope they are Aspergers kids.

The government response is to try jamming square pegs into round holes. My kids will need assistance for the rest of their lives, but the state response is cut off at school age. Oops. Our school's response was inadequate so my wife and I, with another couple, started a school. It has now thrived for 11 years and my children are doing well, just won't be independent. At age 22 they will leave school for whatever we can dream up in the next 5 years for vocation and living.

I work in one of the "good"... (Below threshold)
Bob:

I work in one of the "good" districts that provides an autistic program. It was housed in my elementary school for many years until it moved just this year. My wife just happened to work in that program when we met. The students are wonderful. It is not an easy task on anyone's part. Our district seems to welcome the program. If I am not mistaken, out-of-district students are charged an incredible amount of money that the sending district pays.

I put my beautiful 9 year o... (Below threshold)
ironman:

I put my beautiful 9 year old on the spectrum to bed just now

we've survived thanks to getting top -of- the line group health insurance (no reform for us, please), a strong local school system (thanks to earlier lawsuits) and spouses working two different shifts and having a limited social life.

I hope things improve in the next 9-10 years as we haven't thought what happens post-school

Kevin, I admire both you an... (Below threshold)

Kevin, I admire both you and your wife, and you for bringing this to public attention.

First I commend you for staying with your family as lesser men would have left and let the mother handle the problem.

I don't know much about autism and nothing about asperger's, but I know autism takes several different forms and the children don't all behave the same way.

I want to say this applies to you and your wife and all those who have children with these conditions: "No man (or woman) stands so tall as when he (or she) bends to help a child.

Take care and God bless. If you need us to bombard Congress to get a bill just let us know.




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