NYT Prints Letters to the Editor On Autism and Adults
Why Good Parents Believe Myths About Autism and Vaccines

Don’t Panic- It is Just An Epidemic of Autism

Relax By Katie Wright

Simon Baron Cohen recently released a study in which he found that 1 in 64 Cambridgeshire children have autism. Any reasonable person would find such a result both astonishing and alarming. Has 1 in 64 British children ever had the same horrible disorder at the same time? If one broke down these numbers for boys I imagine it would be something like 1 in 25 UK boys affected with autism.! And yet Baron Cohen insists that  there is no need to be “alarmist” and that this catastrophic increase is due to “better awareness and detection.” Right.

In an interview with the British paper, “The Independent”, Baron Cohen, “dismissed suggestions that changes in lifestyle or environment were behind the rise. They put it down to improved awareness, and the inclusion of milder conditions.”  I know- it IS preposterous.

It gets even more absurd. Baron Cohen argues that “undiagnosed cases are likely to be at the mild end of the spectrum.” Based upon what? I lived in Cambridge for a year and experienced the National Health System firsthand. After I broke the index finger on my right hand (yes I am right handed) I was given an appointment to see a doctor and get an x-ray in three weeks time. My finger was flopping around and any kind of movement caused terrible pain. I called back my GP’s office to plead for an earlier appt and was told that this is the way the system works and I have to wait my turn.  That is just the way it is in the UK.

So if I understand this correctly, Baron Cohen believes that all these undiagnosed cases of autism are probably high functioning kids with minor impairments and no need for “labels.”

Cohen goes on to argue that, “the autism label may raise anxieties and be intrusive rather than helpful.” What planet is this guy on? First of all the NHS is positively notorious for its endless waiting lists. In fact, the National Autism Society UK states, “parents often wait years for an accurate diagnosis.” That’s right-YEARS. I got off easy with a 3 week wait for an x-ray! Now for the second part. Is this 1965 or what? Why does Cohen imply that children with ASD should not be diagnosed due to fear of the stigma. Aren’t we over this nonsense that an autism diagnosis = shame. Believe me, the diagnosis is the LEAST of Christian’s problems. Even in the instances in which autism is mild, children NEED a diagnosis to get services. When was the last time you heard of a child’s health destroyed and his family bankrupted because of a totally false autism diagnosis? Isn’t it far, far, far more likely that children who need early intervention and diagnostic services are pining away on eternal waiting lists?

Any rational adult would see these numbers and think, my God, there was no autism when I was a kid, what is happening that is causing this explosion of autism cases? I mean it isn’t even 1 in 150 as in the U.S., we’re talking 1 in 64! How frightening is that? However, according to Cohen you would be wrong to panic. He says, “We shouldn’t be alarmist…” What? Rather than explore the painfully obvious environmental factors triggering this autism epidemic Cohen argues that the exponential rise is due to  (get ready for it…) better detection and greater awareness. That and nerds on planes I suppose.

Isn’t it time that the traditionalists within the autism community wake up to reality? Or do they prefer their glacial approach until 1 in 10, or 1 in 5, or 1 in 2  British children are autistic?  We cannot wait for all the Baron-Cohens in the field to finally get with the program. It is time for new scientists, new ideas and an actual sense of urgency towards investigating the environmental triggers causing this epidemic- both in the UK and here in the US.

Katie Wright has two young boys. Her oldest son, Christian, is severely affected by autism. He developed normally; smiling, talking, walking; only to lose every skill and every word by the age of 2 and a half. Upon the advice of medical professionals Katie and her husband were advised to pursue only high quality behavioral therapy, speech and OT for Christian. It had no meaningful impact on Christian until his parents sought help from DAN! doctors who treated the underlying causes of Christian's descent into autism. Christian has improved but still has far to go. He has Inflammatory Bowel Disease, the measles virus in his gut and an immune system akin to a late stage AIDS patient. Christian does not have a psychiatric disorder. Before autism, Katie Wright was the Clinical Director of Sexual Assault Crisis Center in Stamford Connecticut. Katie is proud to serve on the Boards of NAA and SafeMinds.

Comments

Ray Gallup

Per.........

"Ray, don't visit the sins of the cousin on the comedian. I enjoy Sacha Baron Cohen. Not sure it's relevant that they're related."

I personally think it is relevant because they are both related as cousins and Sacha is offensive (in the movie, Borat there were comments and behavior that people took as offensive).....but I'll leave that up the eye of the beholder (other parents and public at large) to decide for themselves.

"Nice to see you commenting at Age of Autism again. KIM"

Thank you very much.

Ray

Stagmom

Ray, don't visit the sins of the cousin on the comedian. I enjoy Sacha Baron Cohen. Not sure it's relevant that they're related. Nice to see you commenting at Age of Autism again. KIM

Ray Gallup


How can one take Simon Baron Cohen seriously if he has a cousin (Sacha Baron Cohen)with no class and a clown to boot. See article with videos attached below

Per...........

Eminem admits encounter with Bruno was a stunt

The Detroit rapper told website RapRadar.com that he knew full well what was about to happen and that it was all staged, right down to his disgust when Cohen, clad in white feather wings and a jockstrap, landed face down in his lap, buttocks aloft.

http://news.yahoo.com/s/nm/20090604/lf_nm_life/us_mtv_eminem


Benedetta Stilwell

Don't worry about it bensmyson. The schools will do what they have to do when the time comes and you will do what you have to do when he finally grows up and you finally see what you have. My son is 23 and I still am not sure what we have except I really like him. I worry a great deal that he still lines up (blush-blush) his toys just before he goes out to cut and rake hay. I worry that he just got his drivers licsense last August and drives himself half an hour away to a small community college and yet has not a friend or an aquintance and spends all his extra time playing video games and obsessing over dragon Ball Z. He is like a 12 year old when his birthday comes and tells me constantly that I need to accept him for what he is. I just am not sure what it is - it is not normal but the irony does not escape me when I am able to turn left at red light # 16 in Somerset, Ky into the community college and thank GOD that at that very same red light I do not have to turn right which is the state runned facility Oakwood for mostly austistic adults.

samaxtics

Bensmyson,

I understand what you are saying and also, I think, from where you base your perception about the label of autism being stigmatizing. I’m in a different country and a little farther down the road as my son is now 12. Our healthcare system that Tracy earlier warned everyone about, does not discriminate against pre-existing conditions. As employers are not responsible for health plans there is no reason for them to be digging through one’s health records.

I’m not saying that things are perfect here; services differ across the country and families like ours took a huge financial hit and made other sacrifices to move to where circumstances are better. But my son thrives and that’s all we can hope for.

Anyways, I do want to thank you for this exchange. It has given me a lot to think about and even reminded me about some small mercies I should be grateful for. All the best to you and your family.

michael framson

Amongst all the injustices dealt to the children with autism, and its many expressions along the spectrum, its terribly ironic that our children are the ones who potentially carry a stigma. The ones who were injured?

When will the pediatric community be forced to wear a well-earned stigma?

When will those in and out of government be stigmatized for their horrid behavior regarding "why so many child are sick?"

bensmyson

samaxtics (excuse my error earlier)

Where is the stigma in that?

First of all I guess my interpretation of how stigma/labeling can negatively effect the future of a child differs from yours. My child is three the next time he is evaluated by the school system is at 9, so at best my son will be labeled as being autistic for the next 6 years. 2 of 5 doctors have released him from his autism diagnosis, he has made remarkable progress and because of that I do not expect him to be on the spectrum by the time he enters 1st grade.

There have been many studies on labeling, how once a label is attached to an individual it rarely escapes them. Institutions are famous for this.

Insurance companies, Blue Cross and Blue Shield in particular, do not cover autism. In my state they aren't required to cover it. So we don't want a diagnosis of autism for that reason. And even without that Ben's insurance has gone up in the past 2 years from $100 to over $200 a month, they claim it has nothing to do with anything other than a simple rate increase, if we don't like it we can cancel it and go elsewhere. Of course there is the little thing about pre-existing conditions that may prevent some important coverage. Not covering anything related to autism is like an insurance company saying they won't cover anything related to obesity. High blood pressure? Obesity. Heart attack? Obesity. Seizures? Autism. Crohn's disease? Autism. Celiac disease? Autism.

The Vaccine Court recognizes brain injuries caused by vaccines, they don't recognize autism. Why should my son's primary diagnosis be autism? For $200 a month in services? Free daycare?

When your son graduates college and wants a particular job and for some reason or another 15 - 20 years from now, employers are allowed to access health records, suppose he wants to buy a house to raise a family and lenders access health records as they do a credit check and the "stigma" or labeling of having had autism, prevents him from being included in the American dream.

Obviously this is extremely far fetched but haven't we all seen strange things become acceptable ideology we never in a million years would have dreamed possible?

Who would have thought the governmental agencies entrusted in protecting us, as individuals, from harmful vaccines would betray us the way that they have?

I honestly don't know what was a bigger shock, my son's injury or the fact that hundreds of thousands of other children have similar injuries and the government allows it, and in many ways, even encourages it.

So for now, I won't allow my son's name and diagnosis of autism to enter into any government agency's hard drive, I honestly don't trust them.

I know things are different in Canada, maybe we will move there :)

Standing with you on the same side of the battlefield. Best wishes to you and your family.

Luke Tunyich

Putting in the same basket the classic autism and mild forms of autism is like putting in the same basket children bitten by snake and children bitten by mosquito.

I don’t find any usefulness of any research regarding incidence and prevalence of autism as long as the classic autism isn’t separated from mild forms of autism.

Twyla

Thanks for your 4:42 comment, Mark Blaxill. It is just mind boggling and so aggravating that so many people are still making the "we don't know if there's been a real increase or just better diagnosis" argument -- in spite of the big UC Davis study -- and in spite of experience and common sense and school stats etc.

Twyla

Jimsomnia - There are no accepted medical treatments for "autism", but sometimes Blue Cross will pay for some lab tests etc. based on diagnoses related to the underlying medical conditions such as allergies or digestive issues.

And what matters is the diagnostic code that is on the claim form for that particular expense. So even if your son also has a diagnosis of autism, that should not stand in the way of treatment for GI issues etc.

Of course, some "alternative" treatments are not covered even with a mainstream medical diagnostic code.

samaxtics

Bensmyson,

Although you addressed your post to Tracy, I’m assuming you meant to address it to me.

Evidently your system is quite different from ours. My child is in a mainstream class in a mainstream school. Here, children with Down Syndrome can attend our mainstream school. Children who qualify-i.e. have been labeled/coded- bring to the school an extra $10,000 on top of the per student rate. This goes toward covering the cost of educational assistants to give support in the classroom. It does not matter if you have been a taxpayer for 30 years. If a parent does not have their child assessed and coded, the extra funds will not follow the student. This scenario just serves to make the teacher’s job that much harder and is patently unfair to those children with coding.

I do not share your sentiments about stigma. My son has come a long, long way since he was three years olds when we were told to “think institutionalization”. As I’ve said he’s in a mainstream school and he is doing well. As far as I know his peers don’t know about his autism but I have been frank about his situation, including his vaccine injury, to the staff and other parents. We have never in all the years he has been at school have had an incident where he was discriminated against/made fun of because he needs accommodations such as a scribe for tests and requires an aide for certain subjects. No matter how far my son recovers, I don’t think he should ever feel shame about his past. He was injured through no fault of his own and he struggled damn hard to get to where he is now. Where is the stigma in that?

Lisa

10,000 people have been infected with H1N1 this year. It is largely treatable unless they have an immune disorder.
How many children will be diagnosed with autism this year?
Help me here. We have 50M babies born per year in the U.S. If 1 in 150 (old stats I know) are ASD, isn't that 333,333 children?
Did I do the math correctly? Am sleep deprived...

Kathy Blanco

When my son was diagnosed over twenty three years ago with severe childhood/infantal autism, there were no mentions of a higher functioning type of autism. None, zero zilch. I am wondering if the mental retardation, slight minimal brain dysfunction kids are not being labeled autistic? Just wondering? When was that changed? Even so, the rise is alarming to me. I have a church family around four hundred people, there are EIGHT children on the spectrum. My kids are probably low end, but some of the kids are loud and disruptive and blurt out not so funny things. My kids didn't do that, more stimming stuff? I am wondering if not just vaccines, but the foods we eat, the way we birth our children, the toxicity of our water (fluoride and mutating chemo and other drugs), are causing a new flux of retardation appearing as autism? And if you can come out of it, then that says to me, that the nick on your brain wasn't as harsh as the other child's...which may mean the severe autistic kids had both an in utero virus or immune dysfunction thing, and vaccines, as opposed to something nicked them after birth just by vaccine?

Heidi N

All I can say is that there is something very wrong going on. With autism on every continent, we are in deep trouble. This autism epidemic has opened up our eyes to just how far people can go in the name of greed. I imagine they have been getting away with it for a long time, except now, I don't think we can pull out of this one. The world can't run with most of the people disabled.

Jacey

I think it is GREAT the numbers are coming in like they are!! (yes, that is sarcasm - which sometimes does not come across clearly in type form.) I mean, it seems like these people are going to NEED every single person in the world to have a disease due to environmental triggers for them for FINALLY admit there is a problem. The numbers are coming in hard and fast!! Jesus, when my son was dx 5 years ago, I never thought we would see these kinds of stats until he was a teenager (according to statistics back then). He is now only 7 years old.
We are literally are killing our kids and ourselves. Can't EVERYONE see that? I mean, seriously, what is this world going to look like in 10 years? In 20 years? In 50 years? It scares the bee-jeezes out of me.

Twyla

Ben -
One reason "why the idea is shrugged off so readily" is because we've already had this discussion a gazillion times -- maybe not with you, but with so many posters who try to say that there is no autism crisis -- just better diagnosis. There's plenty of data showing that isn't true.

Benedetta Stilwell

john Stone I know you were writing to Mark but I want to tell you, I am so sorry. Mark thanks for explaining the stats. I have often wondered about them.

bensmyson

When I said, "Ben's diagnosis of developmental delay entitles him to only one and a half hour of speech therapy, "

I meant to say:

Ben's diagnosis of developmental delay entitles him to only one and a half hour PER MONTH of speech therapy

bensmyson

Tracy it's just the opposite. Ben's diagnosis of developmental delay entitles him to only one and a half hour of speech therapy, at the school and he would have to be there all day to receive those services. Had we have gone along with the label of autism then he would be entitled to an hour a week. No in home services, no sensory therapy, no occupational, no play, just a classroom with one special ed teacher and an assistant (no formal training) and 12 other children, how many with autism, who knows. Hardly worth the effort.

No instead we sell our belongings on ebay, sold one of our cars, tapped out our bank account, and would sell my kidney to avoid that sort of help that goes with a specific label. We have spent every cent we have and then some over the past 19 months to see to it Ben receives at least 9 hours of therapy a week. The DAN doctor, the specialists, the supplements are all costs we would NEVER receive a dime for with or without the diagnosis. I have given up most of my work, my wife quit her job completely, we have devoted our lives to finding our son.

Piggyback? Nah, it's just the opposite. My tax money, income, and property taxes over the past 30 years have paid for services my son will never see.

My choice to reject the diagnosis of autism has nothing to do with cheating the system out of something that Ben is not entitled to. It has to do with our faith in his recovery and not wanting to place a label on him that may follow him for the rest of his life. His behaviors, his successes and failures in later life should never be seen by outsiders as the result of a brain injury that presents itself with characteristics of autism. The last thing I want for him is to find a life partner or mate that may reject his desire to father a child because autism may still be be thought of as being hereditary. I have no idea what the future holds, things change daily in our adventure with him so I am open to having a difference of opinion about this someday.

From Bruce Link and Jo Phelan [Bruce G. Link and Jo C. Phelan, "Conceptualizing Stigma", Annual Review of Sociology, 2001, p.363] propose that stigma exists when four specific components converge. (1) Individuals differentiate and label human variations. (2) Prevailing cultural beliefs tie those labeled to adverse attributes. (3) Labeled individuals are placed in distinguished groups that serve to establish a sense of disconnection between “us” and “them.” (4) Labeled individuals experience “status loss and discrimination” that leads to unequal circumstances. In this model stigmatization is also contingent on “access to social, economic, and political power that allows the identification of differences, construction of stereotypes, the separation of labeled persons into distinct groups, and the full execution of disapproval, rejection, exclusion, and discrimination.” Subsequently, in this model the term stigma is applied when labeling, stereotyping, disconnection, status loss, and discrimination all exist within a power situation that facilitates stigma to occur.

Every child is different, every parent has their own way of thinking what is best for their child's development and potential. Each of us do what we think is best for our child. This is just how I am dealing with our situation. It is a personal choice, I may be totally in error but it is how I am dealing with this life event. I respect each and every one of you and your quest to find workable solutions. I come here to learn and apply what seems to work for others. I pay my dues, I sacrifice and struggle just like many of you, I want nothing more than to see my son working at a job, in love and following a dream someday. I will do anything and everything necessary to plow a path for him away from harms way and if that means sacrificing a couple of hours of free speech therapy a month and rejecting government assisted school programs by keeping him at home then we will do that and expect you to respect our decision to do so without suggesting we are somehow cheating you out of anything you are entitled to. When a man is starving he will eat anything, I guess crow may be the next item on my menu, we shall see.

Natasa

meant to say 532. Or whatever, who cares.

Natasa

To Ben, answers to your 3 questions come from recent MIND institute study:

CONCLUSIONS: Autism incidence in California shows no sign yet of plateauing. Younger ages at diagnosis, differential migration, changes in diagnostic criteria, and inclusion of milder cases do not fully explain the observed increases.

The increase is calculated at 600-700%. Changing age at diagnosis can explain a 12% increase, and inclusion of milder cases, a 56% increase. Total of 68% can be explained with better diagnosis. Which leaves at least 538% increase to other factors.

Mark Blaxill

Ben,
If you don't have a point to make then don't make one. The only material change to the diagnostic criteria since Rutter was the addition of Asperger's syndrome in 1994. Asperger's was diagnosed before 1994, it just wasn't part of the DSM IV and has little to do with the rise in the numbers. The stated intent of DSM IV was to make the criteria STRICTER. And if you compare apples to apples, there's no way to escape the idea that the rates have exploded. Just to spell it out, the contempt for the phrase "better diagnosing" is because medical and scientific leadership refuse to deal with the crisis and instead try to claim credit for doing a better job ("better diagnosis") when they really deserve condemnation for failure to face and deal with a crisis.

ben

My point isn't that the increase in diagnose rate of autism is totally a function of better diagnoses. I don't have a point to make, I am really just curious about why the idea is shrugged off so readily. The article only refers to the noton by using quotation marks. These typically are a sign of belittlement, so I was wondering if anyone thinks that it even plays any role at all. All one has to do is look up the diagnosis criteria in the DSM manuals 1 through 4 to note that the diagnosis criteria has changed, so I don't think that is a disputable fact. So do you think it has played a small role, a large role, or no role.

John Stone

Mark

Yes, there are various kind of fudge here.

How could you conclude with any confidence - having detected a much higher rate incidence in a school population - that there was no need to investigate causation.

In fact we know, an Baron-Cohen knows the genetic model for autism has collapsed - so why would you not expect incidence to fluctuate according to other factors, and why would you wish not to investigate those factors as a matter of urgency?

I feel particularly mad today because I have spent a large part of it researching the hopelessly inadequate provision for young adults - we are presently confronted, by three possibilities: we have our son at home without proper facilities and derisory support, some likely very poor and unsuitable local sheltered accommodation, or placement not less tha a hundred miles away (making a nonsense of all our lives).

Meanwhile (1) Baron-Cohen has sat on these figures for half a decade (2) the doublespeak still suggests that the need for greater provision is not necessary, supposing real incidence is no greater than before. The claim makes no sense - with all this better diagnosis, recognition and intervention you would think it would be easier for autistic people to be ready to assimilate into adult society. But on this model they are less prepared than ever before and in far greater numbers.

This is bungling of a high order, but it is us who are paying price while Baron-Cohen is lauded in the media as the greatest living expert on autism.

John

samaxtics

Maybe we could get a pair of underwear with “Autism, it’s not just genes” written across the arse and hire Baron Cohen’s cousin to land on Simon’s face like he did to Eminem at some award show. Maybe then Simon would get the picture!


Bensmyson,

You state: “Now I'm sure if I were to allow my son to be diagnosed with autism (which 3 private doctors who have tested him have confirmed that he is) the school system may qualify for special funds or something, I don't know and frankly I don't care.”


That’s all fine and well as long as your child will not be piggybacking on the services that the children that were coded/labeled bring into the school. It’s a bit of a sore spot with me because we did get our child a label (HFA/Asperger’s and CAPD) so he could have an aide but the children of parents who didn’t want their child “labeled” also get the services of this aide which may have impacted my child negatively at times. Codings can always be removed as a child recovers/improves. Getting the label, and consequently the funding, showed the school that we were planning on being active partners in our son’s education and I believe it gave us a stronger position in our dealings with the administration. (Volunteering loads and being active on school council also goes a long way).

Tracy

First off I will point out that vaccines are not required for school entry in most provinces here in Canada, land of that evil universal healthcare. For those that require a FEW vaccines, all three types of exemptions are readily available. Secondly, the province I reside in offers up to $60,000 a year for ABA/IBI up to 18 years of age. How many HMO's offer that? Then of course there is a contract you can get with Family Services which covers some of the expenses of taking your child to appointments, dental work related to the disorder, respite care, babysitting of siblings, summer camps etc. We also have a monthly disability payment, a year end tax credit for caring for a person with a disability and double the physical fitness tax credit. The government doesn't tell you what you can do or not do as far as therapies; it is a matter of what it will cover. And just like an HMO, it does not cover everything. But we can always keep our receipts and try to claim it on our income tax.
It's absolutely your right to have a hate on for socialized healthcare. It's just wrong to scare others with misinformation. We can leave that to Baron Cohen.

Mark Blaxill

One thing most people don't understand is that the general behavior with respect to diagnosis has very little bearing on the numbers reported in formal surveys. Whenever a survey is undertaken, screening improves because the surveys are always designed to capture undiagnosed cases. So in terms of the question--have reported rates risen?--IT DOESN'T MATTER what the general practice is. What matters is 1) that the old surveys (the ones that found rates of 1 in 2000) worked hard to find undiagnosed cases and 2) the new surveys (that find rate of 1 in 150 or higher) generally work hard to find undiagnosed cases too. (The least reliable numbers come from administrative sources like the DOE, and virtually no one uses these data for anything more than trend indicators. The California data is an administrative source but one with relatively restrictive criteria so the notion that "mild" cases are captured there is ludicrous.) The quantiative claims about increased rates come from comparing old surveys to new, not from observing general diagnostic behavior

The main point is that BETTER DIAGNOSING IS A PATHETIC AND IRRESPONSIBLE ATTEMPT TO CHANGE THE SUBJECT. You can't get 10 fold, 40 fold increases with better diagnosing, it's not remotely possible. It staggers me that some consider that argument to be respectable speech.

bensmyson

Ben asked:

1) Do any of you think there has been an improvement in diagnosis of autism?

To answer your question Ben I'd have to know compared to what and when?

My own personal experience is that the pediatrician we were seeing didn't have a clue.

So if pediatricians were to recognize autism early on would there be more diagnosis of autism? Hard to tell, because sooner or later someone would bring it to someone's attention don't you think? It's not like autism presents itself as anything but non-typical behavior. Just because someone doesn't recognize the autistic like characteristics in a child doesn't mean the child isn't autistic.

I guess what you are alluding to is how better diagnosis has caused the numbers to increase. Seriously how many hand flapping kids were in your classroom growing up? In my community there is, on average, one child diagnosed with autism living in one out of every 30 homes with kids under 18 and that number went up 14% this year.

I would assume that parents are more likely to recognize autistic characteristics than they were 10 years ago thanks to the wonderful job people and organizations are doing getting the word out. Does this make the numbers jump? Well do this, find the number of kids diagnosed with tippy-toe syndrome or a bilateral cerebrovascular disease that causes children to lose their speech, number of kids with seizures, aphasia, mental illness, see if those numbers have dropped in a manner equal to the number that has increased with autism. I mean certainly it should show some correlation. Better diagnosis would mean less chance of misdiagnosing a child with autism as a child with mental retardation.

Tracy

Terrifying!!! And also a good example of why the US should reject socialized medicine. If you think it is difficult to get treatment now, wait until the government can tell you what treatment and when. p

ben

I have two questions.
1) Do any of you think there has been an improvement in diagnosis of autism?

2)If the answer is yes, don't you think that would account for at least some increase in the number of children with autism?

2b) Or you think the answer is no... Do you think there is room for improvement in diagnosing autism? IF this were to happen, would that increase the rate of children having autism?

Jimsomnia

Fear and shame is not the issue for us. I's a more practical matter: Money. We agonized over getting the diagnosis ten years ago and then decided to get it in order to qualify for services.
Upside: Our son qualified for a grant for respite care and "special services" at school, which are nearly nonexistant.
Downside: Blue Cross denies payment for DAN doctor, supplements, therapies, because according to med people like Oregon Health Sciences Univ autism is "incurable and untreatable."
And yes, bensmyson, the school district gets $10,000 extra per year which is not spent directly on my son but mostly on severely violent kids who are not getting biomed treatments.
Many parents are aware of this problem when considering diagnosis, and opt to not get it so that insurance MIGHT pay for more treatment if the "A" word isn't mentioned.
How does this affect the stats?

ObjectiveAutismDad

Katie, Thanks for another excellent article.

The message to everyone should be: "be afraid -- but take action".

Also, here's the math for calculating incidence among boys: If the incidence rate is 1 in 64 and there are 4x as many boys afflicted:

Out of 320 random kids (equal numbers of boys and girls) you would average 4 boys + 1 girl times 64:
5 x 64 = 320

Half of these are boys (160). 4 of those are afflicted. 4 of 160 = 1 in 40.

Anne Dachel

Simon Baron-Cohen spins the myth that autism is a genetic disorder. He's written about the ethics of a future prenatal test for autism. He's interested in fetal testosterone levels in samples of amniotic fluid. He conjectures about the neuropsychology of autism as if he's studying a new human species. He refers to autism as "a mystery" and calls the disorder "fascinating."

Baron-Cohen does for Britain what the likes of Max Wiznitzer, Paul Offit, and Peter Hotez do in the U.S., namely they all pretend that it's some kind of endemic condition that we've never been able to quite understand, but we're working on it.

Autism certainly isn't a crisis according these experts. There's really no way to prevent it. And most of all, it hasn't increased. If one in 150 with autism didn't raise an eyebrow, why should one in 64? We're conditioned to lots and lots of kids having the label autistic. We trust the medical community to know what they're doing and health officials to be looking into these things. As long as the experts aren't alarmed, why should the ordinary folks back home be concerned?

Personally, I think that people like Baron-Cohen have to keep churning out the statistics just as the CDC has to constantly come up with the studies showing no link. It conditions the public to accept autism as a natural part of the childhood landscape. Anytime anyone brings up vaccines as a cause, there's always another study coming out to disprove it. All this is setting the stage for the terrible disaster that awaits us when we have an overwhelming population of adults everywhere disabled with autism. If we believe all the myths, then we're going to be less likely to demand answers and look upon this a crisis of unprecedented proportions. If we've gotten used to children having autism, then it's a good bet we'll be fine with group homes everywhere for autistic adults.

The only problem with this pleasant scene is the cost factor and that's something they won't be able to explain away. We'll have young adults with long life expectancies who will each cost millions of dollars to care for. As the post WWII generation retires, their grandchildren with autism will be lined up right along with them at every Social Security Office in the country. Will we still be calling autism mysterious and fascinating when that happens?

Anne Dachel
Media

meg

I will never understand why an increase in "mild" autism is considered insignificant or unimportant. (Not that I believe than explanation.) Do people not understand how challenging "mild" autism can be?

bensmyson

Katie I am lousy in ability to communicate sometimes exactly what is going through my mind, especially when a new thought bounces around inside my head.

"SBC: There has been a real rise in prevalence but what is at issue are the causes of this rise. In the paper we summarize the quite ordinary factors that might have driven the rise, such as better recognition, growth of services, and widening diagnostic criteria."

I wanted to point out that there are some people like me who choose not to accept the label of autism for various personal reasons and because of that numbers of those with an autism diagnosis, be they 1:150 or 1:64 do not accurately reflect the true number. The true number would be higher. Especially when a large number of the autistic population is not diagnosed until 6 or 7 years of age.

Our pediatrician without explanation or comment, handed us a printout, a checklist of things to review to see if we thought our son was autistic. But in the doctors notes of that day she remarked that "mother overly concerned" "has been picking up bad information off the internet" and so "handed her pamphlet on autism" We never even thought Ben could be autistic, we suspected he was sick or injured. Never even Googled the word "autism" and I was a psych major. If doctors are relying on the parents to diagnose their kids then the numbers are way off, as we all are very well aware. It truly is an epidemic.

Katie thank you for all of your dedication and sacrifice in your struggles to fight for each of our children. You and many others found here are our infantry, the warriors on the front line. I support you completely and wish I had the courage to stand along side. But I am here, sword in hand, right behind you. I've only been at this for a couple of years. I've got a lot to learn but I learn something new everyday thanks to the AoA site and all those that participate.

lets_go_to_court!

Lets turn the labeling table around: these so called authorities are ''stupidistic'' and they need to be taken to court.
This guy is nothing else than a Big Pharma whore! Sue him and get him fired !

Maggie

Seriously, "better diagnosing." Is that their strategy? Is that the best they can come up with? I think Simon baron Cohen has taken too many mercury shots and had too much fluoride in his water, if he thinks that sounds reasonable. They KNOW it's the vaccines, they are just delaying as long as they can.

Katie Wright

Dear Ben's Mom,

Whether a parent wants the label or not is none of my business. I was merely arguing that an autism specialist should never imply that families should feel fear and or shame re the label. It is just a word, yet a word that = services. Baron Cohen has consistently downplayed both the number of autism cases and the seriousness of the disorder, his attempts to advocate avoiding "labels" is similarly unhelpful.

The word "autism" isn't the problem, the problem is that 1 in 64 children are in the spectrum in the UK. Rather than viewing these numbers as a catastrophe, Baron Cohen implies that most of these kids are probably high functioning and don't need much help anyway. If only!

Undiagnosed ASD = not a big deal and Cohen's nerds on planes and mating with other nerds= autism increase hypothesis belong in a Star Trek episode, not in mainstream autism research.

Best of luck with your son's recovery.

John Stone

Not to distract too much from the main matter but I am a little surprised at Katie's treatment over her finger. I still think that normally speaking if you presented yourself at Accident and Emergency with something like a broken finger you might have to hang around for three or four hours but you would get treated in the end. Perhaps they do thing differently in Cambridge however. We shall have to take extra care next time we go there.

bensmyson

Katie I have to say that I avoided the diagnosis of autism in my son because his injury mostly presents with a mild form of autism and he responded immediately with treatment. We had hoped that by the time he reached school age his injury would be corrected. In fact we talked about how we would keep this period of recovery from him until he became old enough to understand.

Some of us have labels, be it "rape victim" or "recovering alcoholic" or "Playboy model" that introduce certain prejudices that interfere with the truth of who we really are. We are not ashamed of our past, we just wish others didn't know about it and use it against us.

I have a meeting tomorrow with the school system because they want to convince me to accept the diagnosis of autism for my 3 year old son so that he can receive a couple of hours of free speech therapy a month. He is officially diagnosed as being "developmentally delayed" and that's the way I want it.

Now I'm sure if I were to allow my son to be diagnosed with autism (which 3 private doctors who have tested him have confirmed that he is) the school system may qualify for special funds or something, I don't know and frankly I don't care. When my son recovers I don't want him using an old autism diagnosis to change his self perception. I certainly don't want it to change other's perception of him.

We are not ashamed of Ben's autism, our story has been documented (incorrectly) in a local newspaper, we speak at meetings and attend workshops. We are taking precautions for Ben's sake. He is our first priority, the school system, government statistical data bases and even the bigger picture of autism activism definitely NOT a top priority.

Benedetta Stilwell

BY three weeks the finger would already healed on its own. If it grows back crooked will they rebreak it and reset it during this appointment you waited so long for. Setting bones was one good thing the medical profession could actually do. Let us hope they are even slower about giving kids their vaccines.

John Stone

Even "two brains" Kev Leitch had difficulty getting his head round the point in an interview with Baron-Cohen yesterday:

"KL: Can I rephrase my question? Would you say your findings support
the idea that there has been a true rise in prevalence? As oppose to
the seven items you say have caused a seeming rise in autism earlier
in your paper?

"SBC: There has been a real rise in prevalence but what is at issue are
the causes of this rise. In the paper we summarize the quite ordinary
factors that might have driven the rise, such as better recognition,
growth of services, and widening diagnostic criteria."

It also ought to be pointed out that Baron-Cohens own "assortative mating" hypothesis (ladies' bottom to hip ratio and all) was formulated in relation to the need to explain the rise in autism. But he actually has no reason to dismiss parents who report adverse vaccine events, and he's even admitted it should be investigated - but don't hold you breath because he suggests a junior doctor might be suitable person (Autism One radio interview with Polly Tommey). He also admits that the gut dimension is important - so why is he so happy to perpetuate all the slurs against Andrew Wakefield?

It should also not be forgotten that he has been sitting on these figures for 5 years:

http://www.ageofautism.com/2009/04/autism-the-64-billion-dollar-a-year-question-for-simon-baroncohen-ben-goldacre-fiona-fox-and-autism-.html


What the hell do you have to do?

Natasa

I bet you Katie once the rate gets to 1: 20 or worse the morons will start saying that this is because now we finally started diagnosing everyone.

The main reason he now is banging on so loudly about undiagnosed cases is to be able to pull out another excuse in few years' time, when the rate climbs once again. He is preparing his excuses for whatever steep rise is revealed next.

Admitting once and for all that this increase in autism is caused by something external would make his role in this world of autism completely obsolete. It would cost him his useless money-wasting job.

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