Good read concerning Autism (slightly long article, easy read)

[OUDoc]

Although I think the data is probably inaccurate regarding secretin (the article is several years old), I thought it was a good representation of how parents of Autistic children feel, or at least how I felt.

Moments ago I replaced the telephone handset in the cradle. For 3 weeks I've been talking with eager mothers and fathers who watched the same television show on Dateline NBC. The mother with whom I have just been speaking sobbed and sobbed with relief and hope and fear as I said that yes, the medicine discussed on Dateline might change her child's life. Most of the parents I've spoken with these weeks have cried as we talked.

Before our children are even born, we begin to dream about what it will be like to have them in our lives. Often our dreams are idealized -- the perfect baby, cuddly and smiling, grows to become the perfect little boy, running up to us with a great big hug and a, "Mommy, I love you!" We go to a parent-teacher conference about our little girl who is the star of the class. We play catch in the back yard. We take our family to Disneyland to share the magic of childhood.

But sometimes fears haunt our hopes -- something is wrong with our child. She's born with a congenital illness, he's snatched by a stranger, or she's hit by a car. Anxiety lurks beneath the surface of parent-love.

The parents I've spoken with share one thing in common: things didn't turn out for them the way they had hoped. Their children don't hug them with abandon or beam at them with delight. She doesn't play catch. He doesn't bring his friends over to play. These children have autism.

When they were born, everything looked wonderful. The parents went through the same sleepless nights, the same hours of joy that parents around the world experience. But as the months went by, the nagging suspicion that something was wrong began to grow. The child didn't start achieving developmental milestones quite as quickly as other little boys and girls. Language came slowly.

The smiles of childhood disappeared from their faces.

Finally the diagnosis of autism was made -- usually at around 3 years of age. And with it a whole new set of reduced expectations. But like sleeping beauty, the old dreams don't die, they just slumber.

Tragically, parents are still sometimes blamed for the autism, even though the old notion that autism is an emotional response to inadequate warmth and love from the parents has been soundly disproved. Today, evidence for metabolic/neurobiologic abnormalities associated with autism is strong, although the exact mechanisms are poorly understood. Adding a hellish twist to the wound, insurance companies often don't cover services for autistic children, claiming that this is a behavioral problem, not a medical problem.

More than 500,000 people in the United States have autism. Millions of children are affected in cities and villages all around the globe, in every different culture. And with every single autistic child comes a wrenching change in the age-old hopes we have for our children.

Gary and Victoria Beck experienced this with their son Parker. Family videos from that magical first year are full of wonder. Parker toddled out of infancy full of enthusiasm and glee. But talking didn't come easily for him. At an age where others were beginning to speak clearly, he still mumbled only parts of words.

Shortly after his second birthday he stopped smiling. He stopped talking. He stopped turning when his parents called to him. He stopped looking into their eyes.

Parker became increasingly irritable -- and his mother's loving arms could do nothing to console him. High-pitched screams replaced his toddler giggles. And the only comfort he found came from oddly spinning and spinning and spinning around.

Like almost half of autistic children, Parker also had significant gastrointestinal symptoms, in his case chronic diarrhea. After 2 years of almost constant diarrhea, Parker had an endoscopy at the University of Maryland to look for the cause. Nothing showed up on the test.

But after the endoscopy, it was as if Parker had awakened from a spell. Within days a completely non-verbal child was smiling, recognizing Mommy and Daddy, and reciting flashcards. It was a miracle!

Victoria and Gary investigated every detail of what had happened to Parker during the test. They discovered that he had been given a small amount of a medicine called secretin. It was Parker's parents who proposed that this might be a treatment for autism. Parker received another dose of secretin followed by further intellectual and social growth.

But those who heard didn't take the Becks seriously.

For a seemingly interminable year, doctors refused to give Parker any more of the medicine. He didn't lose his gains, but further growth stalled. Doctors refused, since secretin hadn't been approved by the FDA for anything more than use in diagnostic tests.

These regulations are designed to protect consumers from unsafe or unproven medications, and they are often very valuable in that function -- but they can also sometimes block good medicine. Robert Sinaiko, M.D. is a prominent San Francisco physician who researches the metabolic basis of autism. His interests include an important detoxifying enzyme -- phenolsulfyltransferase -- that is deficient in autistic kids. He recommends the controversial Feingold diet since it includes fewer phenolic compounds that need to be detoxified.

For this and for similar off-label prescribing for autism, Sinaiko recently had his medical license stripped. This travesty occurred even though no patient complained against Sinaiko's treatment, no patient testified against him, and no patient was harmed. The California Medical Association and 10 expert witnesses, including some of the nation's most respected physicians, testified on Sinaiko's behalf. But the conservative Medical Board is very strict when it comes to new treatments for poorly understood conditions such as autism, attention deficit hyperactivity disorder (ADHD), chronic fatigue syndrome, and multiple chemical sensitivity.

But the Becks persevered with courage and determination. Finally their son Parker and others were treated. In January 1998, Dr. Horvath of the University of Maryland published, in the Journal of the Association of Academic Minority Physicians, a case report of 3 autistic kids who had been treated with secretin. Each had dramatic improvement in social behavior and language. Word quickly began to spread throughout the autism community. Many wanted to try secretin on their kids.

By 1996, about 200 kids had been treated with secretin. About half of them reportedly had significant, objective improvement. Different researchers propose different mechanisms for why it might work. Some point to the role of secretin in the intestines to promote proper digestion. Others suggest that the secretin works directly on the brain (there are secretin receptors in the hypothalamus of the brain). I suspect that the latter mechanism is more important.

Many other questions also remain to be answered. Large, long-term, controlled studies on secretin are much needed to confirm its efficacy, determine what subset of children with autism may respond, and decide what doses are safe and effective. Recent studies involving a small number of children have had variable results. If future research supports the efficacy of secretin, Victoria and Gary Beck can be credited for pioneering this revolutionary new treatment.

While much research remains to be done, secretin may be a promising treatment and major step through a new doorway into the treatment of chemical problems underlying autism. I hope that many families experience a dramatic awakening, either from secretin or from other therapies inspired by its success.

Parents of autistic kids weep when they hear that after receiving secretin Parker Beck looked at Gary and said, "Daddy" for the first time. The pent-up dam of hopes and dreams begins to overflow. The word "miracle" is often used in connection with the results some families have seen.

But let this poignant tale remind each of us that normal life is itself a miracle. Each childhood smile, the many words of our children (which sometimes seem too many), and those moments when they look us in the eye and beam, "I love you!" are nothing short of miraculous!


Alan Greene MD FAAP

http://drgreene.org/body.cfm?id=21&action=detail&ref=761

[12]

Great stuff, Dr. T. Thanks for sharing.

[yermom]

if you treat them can they still count cards?

i've heard lots of weird stuff about Autism lately, like maybe a link to Mercury in vaccines? and something with a high % of kids born in Silicon Valley?

[OUDoc]

There are lots of theories, but no one knows the cause of Autism. Maybe someday.
The interesting fact is it now occurs in 1 of 166 births in America.

[yermom]

am i wrong in thinking that it's mostly older middle/upper class parents?

[crawfish]

I've wondered at times if human evolution isn't driving the increase in autism. Specialization is going to become more and more important - the ability to be incredibly proficient at one thing or a small range of things. As humanity gains more and more knowledge and technical capability, breadth of knowledge (think Benjamin Franklin, etc) should become decreasingly irrelevant as no human can possibly gain enough knowledge in all areas to be functionally literate in those areas.

Just a theory, but who knows? If it's the case then the answer is not to cure autism but harness it.

[yermom]

well, there's that and that we are basically reversing evolution in a biological sense as civilizations evolve

[OUDoc]

am i wrong in thinking that it's mostly older middle/upper class parents?
I'm not sure about that.

[OUstudent4life]

I think the "increase" in autism is in part due to an increase in correct diagnoses. I'm less inclined to believe the vaccine theory, though there are some new weird ones, too...like it can be exacerbated by TV viewing.

edit: here's a article reviewing a new book that talks about the diagnosis problems...good read. (http://www.slate.com/id/2157496/)

[Frozen Sooner]

I've wondered at times if human evolution isn't driving the increase in autism. Specialization is going to become more and more important - the ability to be incredibly proficient at one thing or a small range of things. As humanity gains more and more knowledge and technical capability, breadth of knowledge (think Benjamin Franklin, etc) should become decreasingly irrelevant as no human can possibly gain enough knowledge in all areas to be functionally literate in those areas.

Just a theory, but who knows? If it's the case then the answer is not to cure autism but harness it.

It's an interesting hypothesis, but I can't think of how evolutionary pressures would drive this. As it stands, the people who are succeeding the most in the economy (and would presumably have a high degree of specialization) are reproducing less than those who aren't successful (and presumably aren't successful specializers.)

As someone said above, a lot of the increase in numbers has to do with correct diagnosis.

[crawfish]

It's an interesting hypothesis, but I can't think of how evolutionary pressures would drive this. As it stands, the people who are succeeding the most in the economy (and would presumably have a high degree of specialization) are reproducing less than those who aren't successful (and presumably aren't successful specializers.)

As someone said above, a lot of the increase in numbers has to do with correct diagnosis.

I'm not so sure that the economics of the situation would matter. The wealthiest are rarely the smartest and most specialized (except maybe at being unethical ;) ). The evolutionary process would be led by usage and need, which I do believe are manifesting themselves in the world today.

I do agree that diagnosis also has a lot to do with it. My maternal grandfather was very definitely autistic by today's standards; he was just classified as "odd" in his day. He has a trick memory - at 92 he's still got a near-photographic memory - and as a teen he learned to read German by studying a German book during idle times on the farm (no English translations in the book - he just recognized patterns and eventually used them to put together words, sentences and paragraphs.

I don't have any evidence to support my claims, but given the progress in technology I'd be shocked if humanity isn't going to go through some evolutionary change to deal with that at some point.

[yermom]

either way, it's like Harvey Danger said:

only stupid people are breeding

not all kids with Autism are like Rainman though, i think it's just that there more more "odd" people that would have been diagnosed with the milder versions of it, like Asperger's or something.

[tbl]

So is secretin available as a valid treatment now?

[Ike]

So I think that this points out something that maybe it's time for the medical profession to address...(at least this is the picture I get from the article...maybe other medical professionals on the board can expound a little more on this) and that is the wall of separation that seems to exist between practicing doctors and the doctors who perform research. I understand that some separation is necessary because you don't want every doctor in America performing their own crazy experiments willy nilly. But at the same time, with the vast number of medical conditions out there, if a practicing doctor stumbles onto a potential "cure", he ought to be given a little bit of freedom (and maybe a little bit of money) to test his theory, however crazy it sounds, if his theory is based on sound empirical evidence that came about rather accidentally. Requiring, of course, consent from his paitents or parents to be part of his study, and of course an obligation to publish his results so that his experiment may be repeated for either confirmation or disproving.

I get the feeling that this is not done in the larger medical community, and that researching doctors simply devise their own studies based upon theories of how things work and then contract out practicing doctors to perform it. While this is a nice idea, I think it limits the range of experiments that can be performed, especially when one considers that a practicing doctors observation of a single hitherto unseen effect could potentially lead to significant breakthroughs.


(and yes, the point of this post was to sneak in the word "hitherto" in a sentence.)

[OUstudent4life]

From my (very limited) experience with medical research...even the kind of give and take Ike's mentioning between "researching docs" (MD's, or PhD's, or the few, the proud, the insane, the MD/PhD's (go future me ;)) and "practicing doc's" rarely happens. It's my understanding that that kind of give and take is most often used for drug studies, but actual new novel therapies are often controlled specifically by one group. Collaboration is speeding up, and the NIH is doing what it can (actually, it's trying too hard, and swinging the pendulum too far away from basic research to translational research), but it's still pretty painstaking. It seems one of the best routes to take now is if you figure out a new therapy, start a company, do some work, and get funding through foundations or getting bought by a major drug label. True testing of therapies takes years. Gah. The bad side of the FDA.

To tell the truth, I'm surprised that doc lost his license...I have heard of plenty of examples of off-label use of drugs. I'd like to see what all went into that trial. Maybe they thought it was far too experimental.

Anyway, this is why the government (and medical schools) have stepped on the gas in terms of trying to get more MD/PhD's out there...to try and bridge that "bench-to-bedside" gap more quickly. Not quite sure how it'll all turn out, though, since an MD/PhD takes (I'm guessing) about 7-8 years to complete, and then you've got residency/post-doc to do before you can really start your own career.

[Mjcpr]

Do y'all like Vieenie Weenies?

[yermom]

isn't that how we got Viagra?

[Mjcpr]

isn't that how we got Viagra?
Not to my knowledge, but we use them to give our dog her medicine.

[yermom]

i totally wasn't responding to you :D

the story i heard was that Viagra was initially developed for heart problems, but had an interesting side effect

[Ike]

From my (very limited) experience with medical research...even the kind of give and take Ike's mentioning between "researching docs" (MD's, or PhD's, or the few, the proud, the insane, the MD/PhD's (go future me ;)) and "practicing doc's" rarely happens. It's my understanding that that kind of give and take is most often used for drug studies, but actual new novel therapies are often controlled specifically by one group. Collaboration is speeding up, and the NIH is doing what it can (actually, it's trying too hard, and swinging the pendulum too far away from basic research to translational research), but it's still pretty painstaking. It seems one of the best routes to take now is if you figure out a new therapy, start a company, do some work, and get funding through foundations or getting bought by a major drug label. True testing of therapies takes years. Gah. The bad side of the FDA.

To tell the truth, I'm surprised that doc lost his license...I have heard of plenty of examples of off-label use of drugs. I'd like to see what all went into that trial. Maybe they thought it was far too experimental.

Anyway, this is why the government (and medical schools) have stepped on the gas in terms of trying to get more MD/PhD's out there...to try and bridge that "bench-to-bedside" gap more quickly. Not quite sure how it'll all turn out, though, since an MD/PhD takes (I'm guessing) about 7-8 years to complete, and then you've got residency/post-doc to do before you can really start your own career.


See, from a scientific perspective, I think that this is insane. Practicing docs (by which I mean doctors that see patients on a daily basis) represent a HUGE number of experimental observations, every day. They are "in the lab" so to speak every day, and it's my opinion that the observations they make that deviate from our standard understanding of things can have HUGE implications...even for something that may seem minor. But it seems to me that the observations they make are largely ignored, unless they send their patient to a specialist or researcher. I would think that at the very least, the medical community at large could come up with a way for a practicing doc to record their observations in a way that is scientifically valid and useful to researchers for use in research analysis.

The picture I take away from this is that the medical community only performs research when there is a specific question that is being asked, and a specific hypothesized answer to that question. The problem is that's only half of scientific inquiry. The other half involves looking for previously unseen phenomena regardless of whether or not there is a "theoretical" reason to expect any or not. This depends entirely on getting the empirical evidence first, and then asking specific questions to see whether or not you understand the evidence that is in front of you. If you can't make the current assumptions about the way **** works fit the data, you've got something new that deserves investigation. This part is every bit (and sometimes more more) important as the other part. This is how discoveries are made.

[crawfish]

Not to my knowledge, but we use them to give our iguana his medicine.

You heartless bastard. :)

Poor Iguana (http://www.digg.com/offbeat_news/Iguana_Mozart_suffers_from_permanent_erection)

[Skysooner]

Not all autistics are gifted at a single task. They can sometimes be single-minded. My oldest son has a form of autism. He never had the problems with socialability. He had some language delays and definite physical delays. His IQ tests near mental retardation although he is able to do much more than you would think a kid of his intelligence would be able to. The main issue is the inability to process information in a way that allows him to relate it to other things he knows in a quick manner. He gets things, but it takes awhile.

I do think there might be something to upper middle class parents. The research we have done suggests that children of scientists have a higher incidence rate of autism. Since generally engineers/scientists make good money, the upper middle class argument probably has some merit.

[BajaOklahoma]

I do think there might be something to upper middle class parents. The research we have done suggests that children of scientists have a higher incidence rate of autism. Since generally engineers/scientists make good money, the upper middle class argument probably has some merit.

Then our two Structured Teaching Classrooms are the exception. Twelve kids, even split between middle class and those getting assistance. Variety of ethnic backgrounds too.
One of our kids is actually regressing, which is not a typical Autistic attribute. He is going through more medical evaluation. :(

[Okla-homey]

"autism." Junk science for the most part. IOW, the boys "diagnosed" with it are most often middle to upper class white kids in the US. IMHO, it just doesn't make sense that it would only strike these boys. It's virtually unheard of elsewhere in the world.

[Ike]

"autism." Junk science for the most part. IOW, the boys "diagnosed" with it are most often middle to upper class white kids in the US. IMHO, it just doesn't make sense that it would only strike these boys. It's virtually unheard of elsewhere in the world.


I don't think I'd go as far as calling it junk science, but definitely a not very well understood science. diagnosis may have expanded, and cover a range of effects, but it's hard to argue that the effects are not real.

If indeed it only strikes these people (which I don't believe for a second), that does not mean it doesn't make sense...instead it leads one to believe that there are environmental effects involved. For instance, one theory has posited that there is either mercury or some other chemical that is common in vaccines or other drugs that, if true, would make its existence amongst the upper and middle class somewhat believable. Or there could be something similar that may be responsible

that may be grasping at straws, but when nobody has any idea how it works, even crazy ideas are worth considering....until they are shown false.

[Okla-homey]

I suspect "political correctness" has played a role in the steady expansion of the definition of the "disorder" over the years. The definition of the disorder has expanded too much over the last two decades. (E.g. boys, who in an earlier era might have been labeled "obstinate" and/or even "dull normal," are now classed among the "autustic.")

There may be such a thing as autism, but I believe its scope has been expanded far too broadly. I also have a problem with a mental condition or disorder which seems only to strike middle and upper class white boys. I suspect that is because these boys' parents persistent insistance on a clinical label to explain their sons' behavior. Are girls brains so physically different that the disorder can only rarely strike them?

Also, doesn't having a number of autistic boys enrolled in a public school setting result in certain additional funding? If that's so, school administrators and psychological employees might have a vested interest in expanding the definition of the disorder in order to find a new or expanded revenue stream.

Finally, where are the "autistic" adults?

[OUDoc]

Homey-
My son didn't talk at age 2 and doesn't talk now (almost 6). He shows no imaginative play, but he's at least progressed to the point he doesn't drop things in water over and over again and bounce lego's off the tile floor over and over again. He doesn't play "make believe" with cars or trucks. He doesn't "role play" with action figures, army men or stuffed animals. He tends to walk from point A to point B to Point C and back again. He spins in circles and bounces on the couch. He rarely interacts with his twin brother. He watches movies and rewinds the same parts over and over again.
We're fortunate. He does look us in the eyes at times. He does like to be hugged and will interact somewhat with adults. I still wish he'd talk, but he uses a "GoTalk". When he hits a picture, a prerecorded voice says the word. He completes simple sentences that way so that we know what he wants. There is a diagnosis of Autism. He wasn't even school age when he got it. The school system had nothing to do with diagnosing him and they aren't particularly helpful now that they have him. I'm sure there are diagnoses that are convenient to the school system, but that's not every case.

[Okla-homey]

Homey-
My son didn't talk at age 2 and doesn't talk now (almost 6). He shows no imaginative play, but he's at least progressed to the point he doesn't drop things in water over and over again and bounce lego's off the tile floor over and over again. He doesn't play "make believe" with cars or trucks. He doesn't "role play" with action figures, army men or stuffed animals. He tends to walk from point A to point B to Point C and back again. He spins in circles and bounces on the couch. He rarely interacts with his twin brother. He watches movies and rewinds the same parts over and over again.
We're fortunate. He does look us in the eyes at times. He does like to be hugged and will interact somewhat with adults. I still wish he'd talk, but he uses a "GoTalk". When he hits a picture, a prerecorded voice says the word. He completes simple sentences that way so that we know what he wants. There is a diagnosis of Autism. He wasn't even school age when he got it. The school system had nothing to do with diagnosing him and they aren't particularly helpful now that they have him. I'm sure there are diagnoses that are convenient to the school system, but that's not every case.

Sorry to hear about that. Serious question: Is it possible that he may "outgrow" it? In an earlier time, might such symptoms have been termed "developmental delay?" True story; for three years, we had a next-door neighbor boy in Dayton, Ohio who refused to speak, communicated with grunts and acted very much as you have described until around second grade. We stay in touch with his folks because we were in the same unit at WPAFB. Apparently, he outgrew it and is now in college doing fine.

[BajaOklahoma]

Homey, there's at least one adult living in a special home in Atoka. He is in his 80s now and has always lived there. He is the uncle of my stepsister. He wasn't diagnosed until the late 60s as autistic, but he has always been the same. Until then, he was called "Retarded." I hate that.

Homey, our two units have two boys from Mexico, a Kurdish girl whose dad has been working with our troops in Iraq, a girl from India, and one boy that I am not sure of the ethnic background. Yes, there are some "white" kids too. The schools do not diagnose the kids. You are obviously not aware that the diagnosis is usually made at age three - before most of these kids have seen the inside of a school. And just like the average classroom is full of kids with different strengths and abilities, so are the Structure Classrooms.
Obstinate kids aren't in the Structured Classrooms, they are in regular classrooms until they become disruptive enough that we ship them off to the county school for behavior issues, Special Programs.
And yes, the District does get more money per child for these kids. And it spends way more than per child. For twelve kids, we have two full sized classrooms, a large bathroom with a shower, washer and dryer. there are three teachers and three aides. Trust me, these people are way under paid. Until we had the Structure Classrooms on our campus, I knew as little as you do and pretty much felt the way you do. I used to wonder how a teacher with only two students could be teacher of the year. Now I know better.

[Zbird]

There are lots of theories, but no one knows the cause of Autism. Maybe someday.
The interesting fact is it now occurs in 1 of 166 births in America.

You must mean It's now diagnosed as occurring in 1 of 166 births. More autism? or just more/better/erroneous diagnosis? Of course the other 165 are either diagnosed ADD, ADHD, or BiPolar. And diagnosed by whom? Usually not by someone with any appropriate credentials for making such diagnoses.

Sorry, Just got outa bed crabby and irritable today and I'm not railing at you Doc. In fact, I kinda suspect you'll agree with me.

[blueyedsooner]

I have an autistic boy in my 1st grade classroom. At the beginning of the year he wouldn't look you in the eye, didn't like to be touched, had limited speech...most of which was unrecognizable. He is out of my classroom most of the day...I only have him for about 2 1/2 hours. At first it was very hard to teach with him in there b/c I had NO idea what to do with him while he was in there. We have an excellent resource teacher that gave me some wonderful ideas and being around this child I found out alot on my own. He had 3 baskets in my room labeled 1 ,2 ,and 3. Basket 1 and 2 are things I would like him to do and basket 3 is his choice. He will fly through upper grade work just to get to basket 3 which is usually a center or computer time. He also speaks clearer now...he has a picture book to help when we don't understand as well. His speech is usually very high-pitched, but we can cue him by touching his tummy and telling him to use a big low voice...sometimes sounds like a big cartoon bear, but we can understand him! :) He was not fond of being touched at all at the beginning, but now that he's used to me, I cannot go anywhere without him holding my hand, rubbing my arm, or snuggling up against me as I read to the class! He's so very sweet. His mom and dad were so very excited that he now interacts with the kids. At the beginning of the year I would ask him, who do you like to play with, who is your friend? NO ONE was his response.... he had NO interest in others. So at the end of each day I started bringing him to the front of the circle and had him sit with me and listen to the kids talk about their day as I asked them questions....I in turn would as him questions...no answer for quite sometime. Then it became more and more detailed. Now he answers the same questions the others do, he looks you in the eye sometimes, he interacts minimally in the classroom. The biggest gain is we now have to have a schedule for lunch and recess b/c all the kids want to play with him. He's the most popular kid in class! :) His "play" is much different, but the kids accept it and play along. They do alot of running, hopping, and skipping, etc. But now when you ask who his best friend is, he says EVERYONE in class!!!! He can name each child. Our whole class says goodbye as he leaves for resource and he returns with See Ya Later Guys!
He's the best! We've all learned alot from this little boy!

[OUDoc]

You must mean It's now diagnosed as occurring in 1 of 166 births. More autism? or just more/better/erroneous diagnosis?
The incidence is between 1 in 500 to 1 in 166 children, according to the CDC. General consensus, to my knowldge, is 1 in 166. Of course you have to be diagnosed. There are more being included into the diagnosis of Autism now than were included before. That alone will increase the numbers. But there are clear guidelines for the diagnosis (http://ani.autistics.org/dsm4-autism.html). There were many kids/adults who were just called "weird" or "odd" and left alone, getting no help, or they were institutionalized as "crazy". Including them now doesn't make the diagnoses any less correct. But, yes, that accounts for some of the increase in numbers. No one argues that.
From the CDC:

Has the number of children being served under an ASD(Autism Spectrum Disorder) classification in public special education programs changed?
Yes. In 1994 ASDs were the 10th most common disability serving children ages 6-21 in special education. Between 1994 and 2003 the number of children being classified as having an ASD has increased six-fold from 22,664 to 141,022. While it is clear that more children are getting Special Education services for Autism than ever before, it is important to remember that this classification was only added in the early 1990’s and the growth of children classified may be in part due to the addition of this as a special education category.

Summary
While, it is clear that more children than ever before are being classified as having an Autism Spectrum Disorder, it is unclear how much of this increase is due to changes in how we identify and classify ASDs in people, or whether this is due to a true increase in prevalence. However, using our current standards, the ASDs are the second most common serious developmental disability after mental retardation/intellectual impairment, but are still less common than other conditions that affect children’s development, such as speech and language impairments, learning disabilities, and ADHD. The impact of having a developmental disability is immense for the families affected and for the community services that provide intervention and support for these families. It is important that we treat common DDs, and especially the ASDs, as conditions of urgent public health concern, do all we can to identify children’s learning needs, and begin intervention as early as possible to enable all children to reach their full potential.
http://www.cdc.gov/ncbddd/autism/asd_common.htm


And diagnosed by whom? Usually not by someone with any appropriate credentials for making such diagnoses.

Well, I don't know if I agree with this. If people with the credentials (MD's, PhD's, etc) take their jobs as seriously as they should, they wouldn't make this diagnosis lightly. You're talking medical/academic professionals. I would hope they/we would be more careful than that. No one else should really be making any diagnosis. Teachers/parents/etc can suggest, but they can't make a diagnosis.
I assume you refer to the increase in people with ADHD(ADD). That may be a discussion for another day. I won't prescribe medicine for ADD unless the patient has been to a licensed therapist/psychiatrist and has a letter explaining the tests used and the results showing ADD. I could make the diagnosis, but it's not what I do and would be irresponsible of me. I would hope others take it as seriously as I do, since you are talking about side-effects and expense of a potent drug on a growing child's body and mind.
Even if you agree (as do I) that ADD is probably "over-diagnosed", there are medicines for it (and money to be made on those medicines). There are no medicines for Autism, so you could argue that no one has a profit to make off the diagnosis. The schools get extra funding, but it doesn't make up for what they spend on a lot of these kids.

[OUstudent4life]

See, from a scientific perspective, I think that this is insane. Practicing docs (by which I mean doctors that see patients on a daily basis) represent a HUGE number of experimental observations, every day. They are "in the lab" so to speak every day, and it's my opinion that the observations they make that deviate from our standard understanding of things can have HUGE implications...even for something that may seem minor. But it seems to me that the observations they make are largely ignored, unless they send their patient to a specialist or researcher. I would think that at the very least, the medical community at large could come up with a way for a practicing doc to record their observations in a way that is scientifically valid and useful to researchers for use in research analysis.

The picture I take away from this is that the medical community only performs research when there is a specific question that is being asked, and a specific hypothesized answer to that question. The problem is that's only half of scientific inquiry. The other half involves looking for previously unseen phenomena regardless of whether or not there is a "theoretical" reason to expect any or not. This depends entirely on getting the empirical evidence first, and then asking specific questions to see whether or not you understand the evidence that is in front of you. If you can't make the current assumptions about the way **** works fit the data, you've got something new that deserves investigation. This part is every bit (and sometimes more more) important as the other part. This is how discoveries are made.


I agree 100%. The problem is the clash of cultures between the two groups..."research" docs look down upon "practicing" docs, and vice-versa, for a multitude of reasons. The hard part is connecting the two worlds; people that are publishing observational data in JAMA and NEJM often don't follow through with an initial positive or negative observation (in my mind because a lot of the people doing the work are residents, and therefore not invested long-term in a particular project). People publishing in JBC rarely are looking at a broad physiologic question. There's definitely a cultural/scientific problem.

As to one of your first points, yes, it would be AWESOME if there were a way to track patient data nationwide, and in fact there are programs starting to do this...the problem is they're WAY expensive, and hospitals all use different flavors of each program. You'd be shocked at the level of inefficiency that medical record keeping reaches. (This is why I tell any of my friends that have several doctors to always keep a complete and up-to-date set of their own medical records, so when you go see a new doc, they have all your old data). Anyway, OU MED and the VA here in OKC use completely different programs that can't talk to each other at all. Then, of course, you have that lovely hydra rearing it's heads: HIPPA. The new privacy laws can really strangle research until we figure out how to deal with them.

[Ike]

As to one of your first points, yes, it would be AWESOME if there were a way to track patient data nationwide, and in fact there are programs starting to do this...the problem is they're WAY expensive, and hospitals all use different flavors of each program. You'd be shocked at the level of inefficiency that medical record keeping reaches. (This is why I tell any of my friends that have several doctors to always keep a complete and up-to-date set of their own medical records, so when you go see a new doc, they have all your old data). Anyway, OU MED and the VA here in OKC use completely different programs that can't talk to each other at all. Then, of course, you have that lovely hydra rearing it's heads: HIPPA. The new privacy laws can really strangle research until we figure out how to deal with them.

I think there is a way to take paitent data, make it widely available to those interested in scientific inquiry, and still protect privacy at the same time...it will just take some people thinking about the problem in different ways and putting together a plan that has stringent patient identity protection (ideally, only people who have a NEED to see their history and identification information will be able to access both the history and identification info...ie, that persons physician, surgeons, etc) while at the same time allowing researchers to see the charts and records of nearly anyone but not allowing them to see any identifying information in those charts...just to the point that they know that person 145373 has this medical history and these conditions, and that in the cases of longitudinal studies, that person will always be in the system as person 145373.

Something like this is certainly not beyond our capabilities...

[OUstudent4life]

I think there is a way to take paitent data, make it widely available to those interested in scientific inquiry, and still protect privacy at the same time...it will just take some people thinking about the problem in different ways and putting together a plan that has stringent patient identity protection (ideally, only people who have a NEED to see their history and identification information will be able to access both the history and identification info...ie, that persons physician, surgeons, etc) while at the same time allowing researchers to see the charts and records of nearly anyone but not allowing them to see any identifying information in those charts...just to the point that they know that person 145373 has this medical history and these conditions, and that in the cases of longitudinal studies, that person will always be in the system as person 145373.

Something like this is certainly not beyond our capabilities...

Oh no, it's not. It already exists. It's just uber-expensive for people to buy, get trained on, and use.

[Ike]

Oh no, it's not. It already exists. It's just uber-expensive for people to buy, get trained on, and use.
gotcha.

[OUDoc]

The problem is the clash of cultures between the two groups..."research" docs look down upon "practicing" docs, and vice-versa, for a multitude of reasons.
Whatever.


Geek.



;)

[OUstudent4life]

Hey, now, I get looked down upon by BOTH groups.

And c'mon, Doc, how many of the PhD's that taught you in the first two years of med school did you like, or liked you? BE HONEST :D.

[OUDoc]

Hey, now, I get looked down upon by BOTH groups.

And c'mon, Doc, how many of the PhD's that taught you in the first two years of med school did you like, or liked you? BE HONEST :D.
I don't know. I liked them fine, I guess. I never thought about it that much.
You mean they didn't like me? :eek:

[OUstudent4life]

What/when did you teach? My first two years are quickly becoming a daze.

[OUDoc]

No, I didn't teach. I liked the PhD's who taught me just fine. I thought it was odd (at first) that PhD's were teaching me MD-stuff, but I quickly got over it.