Autism News: Pathetic Non Coverage
Every day after I log onto Age of Autism (my home page) I go over to Boston.com to check out the local sports news. I have been a long time Boston resident and therefore an avid reader of The Boston Globe. Recently, however, I have become appalled at the bias apparent in their news coverage. Usually, I ignore that and just go straight to the sports. Today, however, when their Health and Science section had yet another story on the swine flu, yet not a peep about autism rates of 1 in 100 (and of course nary a mention of the new primate study in Neurotoxicology that you can now find HERE) , I couldn’t contain myself. I wrote this letter to the editor.
I doubt we’ll be seeing my letter in The Globe any time soon. In the meantime, on Tuesday the Globe posted a link to an abbreviated form of the Associated Press story. A day late and a dollar short.
To the editors,
Virtually every day I log onto the boston.com site, I find some new and hysterical promotional article around this or that variant of the influenza virus. Every individual case of death that can be connected to these viruses merits front page news. It’s as if you have become the public relations arm of the CDC, unthinkingly regurgitating every bit of public health propaganda they throw your way, doing your best to stir up fear and panic in uncritical readers.
Any preventable death, of course, is a tragedy. But the flu is not a crisis; mankind has lived largely in equilibrium with influenza and other microbes for millennia. And flu vaccines, the proximate reason for the propaganda, are not the answer: they often don’t work, they don’t affect death rates in elderly recipients, they can increase the odds of hospitalization and most of them contain organic mercury. In the meantime, a new survey reports that autism rates in American children have reached a rate of 1 in 100.
1 in 100.
Did you all decide when you chose careers in journalism that you wanted to become shills for government health propaganda and the profit interests of the life sciences industry? If this is what the newspaper industry has come to, you all deserve to go out of business.
Sincerely,
Mark Blaxill
Cambridge MA
i love you mark blaxill!!!
Posted by: aunt sharon | October 08, 2009 at 03:45 PM
Brilliant.
Posted by: Elizabeth | October 08, 2009 at 02:11 AM
Wow, Angie is on fire! Wew!
Posted by: TexasDad | October 08, 2009 at 01:55 AM
Amen.
Posted by: CJ, mother of Lily | October 07, 2009 at 09:46 PM
Fantastic letter. I love it.
Try reading a South Carolina newspaper. It's more frightening than Halloween 3.
Maurine
Posted by: Maurine Meleck | October 07, 2009 at 09:34 PM
Well, my looong post at the ABC news site I linked to actually no longer exists...it was there earlier, and now its gone...go figure. Here is what I wrote earlier, and also what I re-submitted to them just now:
Ok, lets stop talking to 'scientists' and 'medical researchers' and lets talk to the SCHOOL SYSTEM. Lets ask them if they have seen an increase in the need for Special Education. Lets ask them if they have seen an increase of non-verbal children, lets ask them if they have been just 'labeling' the problems differently or if there really is an overwheliming change in the need for MORE services and MORE HELP at schools.
The answer is YES there are terribly overwhelming amounts of kids reaching school age each year that are more and more 'affected' and require more and more therapy, and more and more special education....
So the man interviewed in this article said 'its like comparing apples to oranges and you cant compare the autism rates from today to 10-15-20 years ago because since then the criteria has changed"...ok, so lets NOT compare the numbers to back then, lets compare APPLES to APPLES then:
1. This study that states 1 in 91 was done in 2007 (almost 3 YEARS ago), and they are comparing the numbers to the study that was done in 2003 (7 years ago)...so from 2003 to 2007 the numbers went from 1 in 150 to 1 in 91. THERE IS AN INCREASE. Not from 10-15-2- years ago, a span of 4 years between the studies.
2. During those 4 years I personally KNOW that the "criteria" used by both Autism professionals and the public school system did NOT change. Many people outside of the Autism 'arena' are not aware that these are TWO SEPERATE diagnosis, there is a "medical diagnosis" and an "education diagnosis" (at least in my State of Wisconsin, and just about everywhere else I have talked to professional and other parents). The "medical diagnosis" HAS to be completed by an "authorized Autism Diagnostician", meaning a family doctor just cant tell a parent 'your kid has Autism, I am dx with Autism, and then it be officially diagnosed'...no, the doctor has to refer the child to a specialist who completes a SET PRE-DETERMINED examination, step by step, the same criteria is used for everyone. its not a one size fits all answer here, the child has to 'score' in various issues within various topics to be diagnosed with Autism. From everything I have read and researched, this diagnostic tool used to dx Autism for a 'medical diagnosis' HAS NOT CHANGED IN WELL OVER 20 YEARS. If I am wrong, I would love someone to correct me and show me the different diagnostic tests, show me what you say 'used to be' and what it 'is today' to show me that MORE kids are now 'able to be dx'd with Autism than 'before'...show me the difference.
There is also an 'educational diagnosis'. I our state, at age 6 the child needs to have an 'official diagnosis' in order to get Special Educational services. The child is evaluated completely seperate from the 'medical' evaulation, the schools have similar but think the educational eval is a little more detailed with its distinctions within the Autism Spectrum, and the schools seem to want to know in more detail if the child has "High Functioning Autism", "Low functioning Autism", "PDD-NOS", they want to know more specifically where the child is WITHIN the Autism Spectrum, so they are better suited to prepare for the special services if they child needs them. I found both the medical and the educational evaluations are NOT anything to 'laugh at' because they both have been intensive and they both have strict 'scoring' guidelines, that do NOT leave anything up to plain 'interpretation' by the diagnostician or the family. So basically, no one can just say 'well he looks to have Autism' so there for 'I am diagnosing this child with Autism' as the media and some professionals kind of assume it to be, that it has become more of an objective evaluation today than it has in the past..which is FAR from the truth. If I am wrong, I would LOVE to see anyone show me a child who has been officially diagnoses, or even a family who has been 'told' their child has Autism who has NOT completed either a Medical or Educational evaluation/diagnosis and is not getting any special services, I am willing to BET its hard, very hard to find. Surely, withiin the 78,000 or so parents who were surveyed for this study, I am willing to bet each one is getting or has received services, therefore each one would have had to been extensively evaluated in order to get ANY related/needed services/therapies.
Autism is a SPECTRUM disorder, meaning there are varying degrees in the diagnosis. All that I have seen that has changed is the 'term' PDD (Pervasive Developmental Disorder)...is it "on" the spectrum? has it always been 'on' the Autism Spectrum? I firmly believe this is exactly where some of the people who claim there is no real increase, just a broadening of the diagnosis is getting thier incorrect ASSUMPTIONS. Let me explain fully for those who are not in the Autism Community/arena...not to say that you are 'ignorant' but that I sure was not aware of anything like this until it 'hit home' to us (not once, but with two of our three children)....
The term PDD has previously used for patients who have not been officially evaluated for or diagnosed to have an Autism Spectrum Disorder. Many kids, prior to, or at the start of their Autism journey are given the 'label' of PDD-NOS, this is "Pervasive Developmental Disorder-Not otherwise Specified", meaning, they have no idea WHY this child is not progressing from "SDD" or "Significant Developmental Delay" often a label/dx given to kids within the Birth to Three programs because a lot of therapists within the 0-3 program have simply evaluated the child for any developmental delays, which would mean that if the child is more than 25% delayed in any area of speech, gross motor skills , fine motor skills, self help skills, and social skills. A child who only 'scores' a delay of 25% or more in the 0-3 program within one category, for instance the child is fine in all areas, but has a speech delay of over 25%, then the child will be dx'd with a "Speech DELAY"...if there are only 2 category's the child will more than likely be diagnosed with a 'speech and gross motor (etc) DELAY'...they do not use the term "disorder" until they know that the 'delay' has not been able to 'catch up' with simple therapies and general maturation times. If a child has more than a 25% delay in several of the categories, a child will be dx'd with an "SDD" or "Significant Developmental DELAY". In my state in particular, in order for a child to attend a public school, after the age of 6 years old, the child MUST be fully and completely RE-evaluated (if they havent been prior to age 6) to get a diagnosis of 'DISORDER' over 'DELAY' because by age 6 the child will have 'grown out of' any 'delays' thru therapies and maturing. Still with me?... I know its a lot of information all at once to follow if you are not 'living it'...
So, by age 6, or sooner if there warrants any more concern beyond the "delay" diagnosis a child will be educationally evaluated for any Disorders, including Autism. by this time, there should be a much more visable distinction in the child's scores in evaluation to diagnos the child with a specific DISORDER....
Most parents and therapists have their child further re-evaluated much earlier than age 6, at the very least for the medical diagnosis because the child is not improving, and sometimes even regressing during the 0-3 program and/or right after the 0-3 program when the child enters the public school setting for special education. From age 3 on, the public school system is responsible for evaluating and providing needed therapies and interventions for any child who needs them. So, YES, even when they leave the 0-3 program, they are fully and completely evaluated by the public school system probably right before they turn three, or shortly after (within 90 days I believe is the 'protocol') so the public school system can make and official Individual Educational Plan (or IEP). The 'IEP Team' consists of many different professionals, the parent, and usually at the first IEP meeting/planning session the previous head of the 0-3 team for that child. For example, I will use what my sons teams had when they turned 3 and entered into the public school system:
They were evaluated by a Speech Pathologist, and Occupational Therapist, a Physical Therapist, a Pyschologist, a Nurse, and an Early Eduation Special education teacher. Each held their OWN indivual evaluation sessions and testing (we had the OT and PT actually on the same day, but both worked individually with each of my boys and had their own evals and scoring tools). At this time, the previous evals from the 0-3 program where not considered in the eval scoring because they needed a fresh perspective, and they looked for ALL sorts of 'issues' not just Autism or related disorders.
So, after the evals, and time for the therapists to score and come up with a diagnosis and plan, all individually, it was probably at least a few weeks of evaluations, and then a few weeks after the last eval was done when we had the IEP meeting.
At this IEP meeting, the parents attend (and they can also bring any advocates they want, whether a grandparent or friend for 'support' or an attorney or specialist of their own), the 0-3 Team leader who knows the history of the child, the nurse (who has reviewed all previous health records from all doc's the child has seen, in our case it had been at that point our family doc, his allergist, his asthma specialist, a GI doc..I think that 'it' for that point in time)..ok so we had:
Parents,
0-3 Team Leader (ours held a masters in social work, which the team lead usually has some sort of social work degree),
District/school Nurse,
Speech Pathologist,
Occupational Therapist,
Physical Therapist,
Pyschologist,
Early Education Teacher (which usually, ideally, would be the teacher your child would have if they qualified for services after age 3 within the public schools),
And finally, a TEAM leader, which in our case, has been the district head of Special Education.
All of us then gather and each person goes over their individual evaluation reports and state what their plan of action for therapy, if needed, is reviewed.
The team then works together to put everyone's input into what kind and how often the services this child will recieve, as well as any official diagnosis (if changed from 0-3 or not) is for the public school system.
Both boys of mine, at this 3 year old IEP continued with their 'SDD' (significant developmental DELAY) because yes, they both had many 'characteristics' of Autism, however no one completed an official Autism Diagnosis because we were all HOPEFUL things would STILL change over the next year, that with more therapy, they would loose the 'delay' dx and be 'normal' without the need for further services after Early childhood (K3 special education), or K4-K5 when the child would be officially evaulated for any 'disorders' beyond any 'delays' they may have had....
S0, both of our boys had recieved speech, ot, pt, special education early intervention services thru kindergarten, and let me tell you, both were in 'integrated' classrooms, which had both special education kids and 'typical' kids. In all of my life, I have NEVER EVER SEEN SO MANY CHILDREN with the desperate need for invasisve therapies, when I think back to my old neighborhood, full of kids 'playing until the street lights came on', I mean a block of probably 20 various ages of kids, not ONCE did I ever seen more than one child at a time that even 'looked' as though they needed any help..I moved around a LOT as a child, and went to many elemetary/middle/high schools, in various states, and I can remember only ONE Special Education Class within all of the various schools, and from what I vividly remember, it was never more than 4 or 5 kids, and they were all grouped together with various ages, lets say a first grader, a 4th grader, and a 6th and 8th grader, all needing to be grouped together because there were so few, it didnt make sense to have more than ONE special ed classroom..again, I never saw that growing up, was I shelter from that, I dont think so at all, because like I said, i saw it at many various schools, public and private. I NEVER EVER knew any kid who was non-verbal, the longest I remember someone taking to talk was my 3 year old cousin who didnt have more than 50 words by age 3 and the entire family freaking out (I was 15 or so when this was going on), aunts and uncles calling specialists, and the kid getting evaulated here and there and no one was 'giving them any answers',because he kept scoring ok on evaluations, and sure enough by like 3.5 the kid woke up talking full sentences...so, with my experience, personally, now, when I would observe and visit my son's classroom and school, I would see a HUGE difference! HUGE!
Half of my sons K4 Integrated classroom (about 24 students) had 5 kids who were non-verbal like my son. Out of the 24, about 16 were "Special needs", and I have to say probably another 5 of them were not officially evaluated for anything because the parents where 'waiting for the kids to grow out of it', but the school knew they needed the extra support of this class, and by the end of the year 4 of the 5 had been dx'd with needed various therapies...and TRUST me, therapy is NOT EASY to get from the schools, its not like its given out when just 'asked for'....us parents have to literally FIGHT to get even MINIMAL therapy for our kids, so I get SUPER angry when I hear "well, parents these days worry too much, kids will grow out of it, they dont have to ask to get all of this crazy expensive therapy that the schools just give away'....because, to this day, my sons probably get about 70% of what they TRUELY need thru the public school system, and that is because I have been vocal and have been an advocate for my children, I have not taken NO for an answer when my child NEEDS something, that his evals clearly outline for him to NEED, trust me the schools want to provide NOTHING 'extra' for any student, let alone the costly special ed services and therapies, and will try to slide by with the minimum each and every chance they get, and often parents will not listen to their instincts and wait too long to have the kids 'grow out of something' before they ask for an evaluation....and then by the time those kids are evaluated, they end up needing much more therapy than they probably would have needed had they been getting services thru Early intervention.
So, this is just for the diagnosis of a DELAY, not AUtism...
The Autism eval and diagnosis is MUCH more strict, much more organized ,and much more thurough, I would be happy to continue to share with anyone that is interested....I hope people who BELIEVED this groan who claims this increase from 1 in 150 kids to 1 in 91 kids (or even the increase of Autism at ALL) is just 'better diagnosing'...understands that this guy, no matter what kind of professional he is or isnt, obviously has NOT viewed or understood what the Diagnosis OF AUTISM really entails.
I would be willing to believe him IF the diagnosis of Autism relied AT ALL on 'speculation' or 'individual OPINION'...but it DOES NOT, and HAS NOT. The criteria for both the Medical and Educational Diagnosis's of Autism are BLACK AND WHITE, there is NO GRAY area what-so-ever, and nothing is left to interpretation or opinion, nothing.
Ok, so you still dont believe me, then think back to your earlier educational years, or high school years, how many kids did you know with Autism? Wait, lets pretent the word "Autism" is a "new" term, or even that the diagnosis is 'easier' to get now because the 'criteria has expanded to include other newer things (like PDD/PDD-NOS for instance), just take a look at the amount of kids in any ONE class, in any ONE school, and you will be SHOCKED to see the numbers, they are in NOW WAY what it was like 10-15-20 years ago, not at ALL. My older son's K5 grade last year, had 3 classrooms of kids, all with 15 kids in them, so 45 kids. We are located in a big city, so its a nice 'sprinkling' of various economic and racial groups. OUt of the 45 kids, there were 2 girls and 4 boys who had the OFFICIAL medical and educational diagnosis of Autism. 2 more of them 'simply' needed continued speech and occupational therapy and Special educational services for other 'special needs'....wow, that is 8 kids out of 45 who needed Special Ed, in ONE SCHOOL, and that was just ONE GRADE level. I mean, our schools now all have been equipped with a smaller gym full of ot and pt equipment, like you would see if you had to go to a clinic for PT yourself....did you ever see that when you were growing up?
Ok, still dont fully believe there is just 'better/wider diagnosis' and there is not an AUTISM CRISIS going on today, any different than years ago....Maybe you believe that years ago people where 'ashamed' and 'hide' their kids who previously maybe were called 'retarded'...sure, I do remember this, ONE HOUSE on ONE BLOCK in ONE city, ONE Mom had an older son who had special needs, and that was because he had been in a car accident and then into a coma for over a year, so he was in a wheel chair and couldnt talk as a teen, and his family did 'sort of' 'hide' him...
Now, sure, it might be more 'socially acceptable' to have a child with Special Needs (who ever says this obviously doesnt LIVE with Autism in their lives, because it is NOT 'socially acceptable, my now 5 year old can HEAR and Understand the horrible remarks he gets each and everytime we go anywhere in public...he is non-verbal and often grunts/makes his own 'words', squeals in delite, etc...but go figure, there is not one store or public outing where someone doesnt make and ignorant and hurtful comment. I used to ignore them, but now, I dont, I mention he has Autism and he is not able to speak the language they can, but he can see and hear and HE knows ignorance when he sees it, and he is only 5 years old, how old are you?..thats one of my favorite comments I have made, so I use it often....and on the other end of this, there have also been people who have been supportive, who either clap if they over hear it, or secretly come up to me later on in the store and pat me on the back or say 'good job'...etc)...anyway, for those who think its just 'socially more accepted' to have a kid with Special needs, let alone Autism, that parents arent putting kids into institutions and/or ashamed and hide away. Maybe that could be a SMALL PERCENTAGE of cases, but there sure are still many parents who continue to put thier kids institutions and STILL 'hide away' so it no where NEAR accounts for the DRAMATIC rise in numbers...not even CLOSE!
Regardless of any 'number' or 'stat', I know and have seen the increase myself, have experienced the increase myself ,along with many other issues, not just Autism....asthma, childhood obesity, childhood diabetes, childhood autoimmune disorders/diseases, and environmental allergies (especially in much younger children, when my son, now 6 years old was 3 years old, so just 3 short years ago, when we first visited the Children's Allergy Specialist, he couldnt believe how much younger and younger kids were getting diagnosed with 'environmental allergies'....but basically 'environmental allergies' are a diagnosis similar to PDD-NOS, that they cant tell what is going on, but the child does have the symptoms of allergies, but no explained 'cause' for the allergies, like mold allergies, animal,flower, dander, etc..all test negative, yet the child still is suffering with the symptoms of runny nose, itchy and scratchy eyes and throat, hives, etc...with no explained 'cause'.....the allergy specialist who is a longtime childrens specialist with many national recognitions, been in practice over 30 plus years, and he said that up until the year 2000 or so he has never diagnosed a child with unexplainable 'environmental allergies' under the age of 6 in his career, and even 6 was pretty early of an age...but since 2000 to now, its common practice to have many toddlers, even infants being diagnosed....
So, would this be because the definition or criteria for the diagnosis has changed, or broadened, or could it be that the kids are experiencing these unexplained reactions, hives, constant runny nose, constant scratchy and itchy eyes, watery eyes/etc much much early and much more than ever before? Could it be just that parents are more 'worrisome' these days and 'run' to the docs more and more these days over 10-15-20 years ago? Maybe a very teany tiny bit yes....HOWEVER that does NOT MEAN that this Childrens Allergy Specialist, with over 30 plus years of childrens practice in this specific allergy 'arena' is now seeing SO MANY more kids younger and younger every day..,is it possible or even realistic that this doc in over 30 plus YEARS has just not 'seen' the kids sick like this before, and parents just hide these kids away, that primary care doc's just never refferred suffering infants/toddlers/young kids TO the CHILDRENS ALLERGIST before? no, NOT LIKELY, and pretty absurd if you think about it that way...
So why is it ANY different with Autism. Fact is, THERE ARE MANY MORE KIDS TODAY WITH AUTISM THAN EVER BEFORE. No matter what the 'STAT' is, our schools are overloaded and there are probably 1 good therapist EXPERIENCED in AUTISM and 1 good teacher EXPERIENCED in Autism for every 100 kids. And that is probably an understatment! The teacher my son had last year for K4 had only graduated 4 years prior, and SHE said she had not been properly prepared, not even 10% prepared/educated in how to teach these Special kids. So, at the very least, 4 or 5 years ago, a major respectible university had no idea this was such a huge problem, that the teachers (university 'known' for its great 'educational programs') did NOT prepare the teacher, who MAJORED in SPECIAL EDUCATION and even had her MASTERS in SPECIAL EDUCATION, was NO WHERE NEAR PREPARED FOR THE REALITY of the actual NEEDS of the kids, let alone the AMOUNT OF KIDS SHE WOULD NEED TO WORK WITH AT ONCE....if that doesnt speak volumes, then what does?
If you still dont believe in any real increase...well then can you please show me 1 in 91 adults who would be diagnosed with Autism...heck, even 1 in 91 adults who WOULD have 'qualified' for an Autism Diagnosis while in their school years (for those who have said that some kids just have grown out of it, or all of a sudden became 'higher functioning people on the Autism Spectrum...some have claimed that as well)...show me even 1 in 500 adults who have or would have been considered to have Autism when they were younger, show me 1 in 1000 adults who are non-verbal and unable to communicate, OR who WERE non-verbal thru out elementary school and now are suddenly verbal (there are kids who do become verbal, lots of them,but not at even CLOSE to the amount of non-verbal 4-5-6-7 year olds that there are today)...
In the mid-90's it was said there were 1 in 10,000 kids who were considered to be on the Autism Spectrum.
For reference, today, its said there are 1 in roughly 2,500 kids who have Juvenille diabetes (and look at how much of an Epedemic Juvenille Diabetes is, how much attention is paid to this, at 1 in 2,500 kids)...
In 2003, when the first study like this one was completed for kids ages 6-14 (if I am remembering correctly) it was said the number was then 1 in 166 kids and then to 1 in 150 kids...
Today, the release of the same study, just completed 4 short years after the study in 2003, now states that 1 in 91 kids are on the Autism Spectrum....
So, where are all of the kids who are now adults from the 90's that were somehow not included or not studied or even not diagnosed to make up the difference from 1 in 10,000 (TEN THOUSAND) kids to make the huge difference to 1 in 91 kids?
I am sorry, but 'better diagnosis' or even 'better early identification' or even IF there was a 'broader criteria now than then', or whatever the 'claim' is....it would NEVER be THAT HUGE OF A DIFFERENCE IN STATS....
Its not that diagnosis's for things get BROADER as time goes on, to make things 'less specific'...as time goes on things get 'stricter' and even more SPECIFIC...I mean, you dont take a bunch of kids who have had cancer and blindly say that 'cancer' rates are going up because more kids are being diagnosed with 'cancer' rather than more kids getting diagnosed with 'hodgekins', 'or other SPECIFIC kinds of cancer'....when a child today is diagnosed with CANCER, they can get a specific kind/type of cancer, they have specified and identified several different types of cancers and are able to group them specifically....but 10-15-20 years ago, I am willing to bet that several of these childhood cancers either did NOT exist, or even they DID exsist but they were not recognized...but kids still had cancer, they just were not able to name it...
So, you might say this just prooves opposite of my arguement here, BUT it doesnt...look closer and you will see that sure, they might not have had the specific name or type of cancer before, so more kids today are being diagnosed specifically with one vs the other type...BUT the fact is that the kids still had CANCER before, there just wasnt a name for it...but the kids were still SICK with CANCER...
Same with Autism, sure there might be BETTER recognition EARLIER on in toddlerhood now than 10-15-20 years ago, however if you think its just 'better diagnosis' that more kids are just being specifically said to have 'autism' because there wasnt a 'name' for the disorders years ago, like there may have not been a specific type of name for a specific type of cancer years ago...the fact is that kids WERE STILL SICK years ago regardless if it had a name or not...so where were all of the kids who would have been diagnosed with Autism had it 'had a name' back then? Point is, they ARE NOT OUT THERE in the numbers like today, there ARE NOT 1 in 91, not 1 in 150, not even 1 in 1,000 adults out there today who experienced and desperately needed the therapies our kids need today when they where young...NOT EVEN CLOSE...
Still think there was no increase? Well, I guess you just arent listening, because you DO NOT WANT TO listen for some reason, or you are completely ignorant to the DEGREE of DAILY LIVING AND SURVIVING HELP OUR KIDS NEED TODAY, just ignorant of what AUTISM really is...and to you, I say, go visit/volunteer in a Special Education, early childhood class or elementary school....go speak to an elementary teacher who is teaching these young kids, heck, go search out a parent of an Adult who HAS AUTISM, and talk to that parent and see if THEY ever saw ANY kids like their child when their now adult child was younger, I am willing to bet everything that the parent of the adult child with Autism NEVER saw what is going on with the younger generation today, that there could NOT have been 1 in 91 or even 1 in 1,000 kids like theirs years ago....the parents of the adult children with Autism and the public school therapists and elementary teachers are the ones who KNOW and LIVE the answers....that there JUST WAS NOT THIS MANY KIDS WITH AUTISM BEFORE...
The numbers continue to grow...when will people start SEEING, when the Autism rates are 1 in 10, 1 in 5? What will it take? So many kids and teens are so disabled by Autism today that if things continue without a cure, without prevention, then WHO will be our workforce in 10-20 years? At this rate, if things never change again, it could be as high as 1 in 91 people who are unable to have full time employment, 1 in 91 who might be on full disability, unable to live independantly...what will happen then? I guess it will either take Autism to affect their own child/loved one OR it will affect them in their wallet, in the increase in taxes it will take to be able to support the upcoming huge WAVE of adults with Autism...sad that it will probably have to take one or either of those to PAY ATTENTION to this HORRIBLE and quickly increasing (in numbers and both severity) disorder...
I wish NO ONE else would EVER have to face what my boys face all day, every day....and I will continue to speak out in order to not only spread awareness to help my boys and my family, BUT TO SHARE OUR STORY in order to help to PREVENT others from getting to where we are and where we have been. The future of our Country lies in our youth...and 1 in 91 (probably more since these stats are from a 2007 study) of our kids have Autism.
Think about that.
Posted by: Angie | October 07, 2009 at 08:54 PM
The new autism numbers WERE covered here in India on CNN- which I believe comes out of Hong Kong. Covered very cheerfully indeed! And with so many possible explanations for a possible rise that anyone would just throw up their hands and say "Wake me up in 20 years when you figure out the cause" . Naturally their favourite choice was the doctors getting better at diagnosing ! and then there was my own favourite- TV watching !
Im just curious- do they try that one out in the US too?
Posted by: Cherry Sperlin Misra | October 07, 2009 at 04:51 PM
ARGH! Here is my long response to ABC "NEWS", I hope I made some sense..lol, I was pulled away a few times by the kiddos:
http://abcnews.go.com/Health/MindMoodNews/estimated-number-children-autism-doubles/comments?type=user&loginCode={40B43816-B339-46E0-8A79-E8290C6EF626}
I CANT BELIEVE they posted my user name as my user name, I totally didnt intend to use my email as my user name..gosh, hope I dont get bamboozeled by ND's, thats the LAST thing I need...ARGH!
Also, I just got an email response TODAY from my Senator about the NAA email "how much longer"...of course its a 'canned' general response, at least it was realated to Autism a bit, but still 'canned/general'...anyway, I wanted to share his first few sentences in the email:
"Thank you for contacting me about autism research and therapy. I appreciate hearing from you, and welcome the opportunity to discuss this important issue with you.
The Centers for Disease Control (CDC) has described autism as the "fastest-growing developmental disability," now affecting more than 1 in 500 children. This disease steals the personalities of afflicted individuals, as well as the time-and patience-of their parents. The scientific community has learned a great deal about Autism Spectrum Disorders (ASDs), but much work remains to be done. "
Ok, did I read that right, he said 1 in 500? Gosh, I dont even know if that was ever an 'offical' number, let alone one that was within the last 4-5-6 years? I am ANGRY...and its even MORE OBVIOUS that we need to get LOUDER, I mean, 1 in 500 is FAR from 1 in 91...heck , even the 'older' stat of 1 in 166, or 1 in 150....1 in 500, BOY the work that is needed...
ARGH!
I have already started a response, but if anyone wants to write back too, he is Senator Herb Kohl from WI, and actually, sadly a member of the "Labor, Health and Human Services and Education Appropriations Subcommittee" as well, with this AWFUL stuff he calls 'information' of 1 in 500!
ARGGGGGGGGGGGGGGGGGGHHHHHHHHH!
Angie
Mom to Ethan, Alex, and Megan
Posted by: Angie | October 07, 2009 at 04:26 PM
Sara, as one NPR commenter stated there, if the media had been paying attention to autism rates they would have used the weekend to do research and fill lots of column space on Monday. Plus do followups on Tuesday.
Instead they parrot press releases and use valuable column space to whine about being scooped. Talk about missing the entire ecosystem for the trees....
Posted by: nhokkanen | October 07, 2009 at 03:27 PM
MARK !!!! You just described MY day!!!! Start the day on AoA then surf over to Boston.com !!! Even I wrote a letter to the editor which I doubt will get publiched, too!
Any lottery numbers you wish to share?
Posted by: Harry Tembenis | October 07, 2009 at 03:10 PM
Some of you may not have known but this information was under a Media Embargo and they were not allowed to report on it.
Check this NPR Article:
http://www.npr.org/blogs/health/2009/10/when_news_breaks_on_autism_who.html
Posted by: Sara | October 07, 2009 at 01:37 PM
Mark,
What a great letter. Dan O. made a similar comment about the media at the NVIC conference on Sunday night... They seem to have forgotten that it's their duty to hold the government's (and everyone else's) feet to the fire.
Posted by: ObjectiveAutismDad | October 07, 2009 at 12:50 PM
Of course they can't advertise the autism rates, they have H1N1 vaccines to sell.
At my husband's place of employment today, they are giving seasonal flu shots and people are actually taking them. Completely voluntary and people are taking them. Maybe cuz they're free. The consent form even warns of the mercury and people are taking them!! I'm horrified.
Posted by: Maggie | October 07, 2009 at 12:41 PM
I completely agree and feel the same way about these newspapers. AoA has the reports on the science (that the newspapers always state is against us), the facts and the agencies that are supposed to be helping our kids but instead turn their backs on them. If a mainstream paper would have the guts to do the right thing and report the same way, people would be informed and be able to make choices to truly protect their kids. I thought that was what journalists were supposed to do...
Posted by: Kristin | October 07, 2009 at 12:15 PM
I think the point you made concerning what the report might have said had it landed on the front page, is probably more disturbing that it not being printed at all.
Hence, ABC did do a report on it -
http://abcnews.go.com/Health/MindMoodNews/estimated-number-children-autism-doubles/story?id=8737978
I am appalled that the justification was quoted as "The concept of autism is very different than in the past.. the new numbers of 1 in 91 is apples to oranges"
I beg to differ, The question 78,000 surveyed were asked was did a Dr. ever say your child has "some form of ASD"? 1 in 91 said YES! It doesn't matter if it is a Fuji apple, a Macintosh Apple, or a Red Apple ~ The fact remains, it ain't an ORANGE!
Posted by: Tracy McDermott | October 07, 2009 at 12:11 PM
Trying again to appeal to you all that writing letters is not working, has not worked. Do you really think they are going to part with their billions because a few hundred people try to appeal to their sense of right and wrong and decency? How has that worked for the past 30 years? They are not going to part with their money over a few letters! If they had any decency about them this wouldn't have started in the first place and wouldn't continue.
We should let the taxpayers know what is going on. Especially the taxpayers who oppose liberal spending. Especially now that there is a Democrat in the White House. (Sorry Mr. Obama, you had your chance.)
If "they" only knew how much taxpayer money is received by pharmaceutical companies and insurance companies and physicians and children's hospitals for our kids' meds and hospitalizations, and tests, and EEGs, and MRIs and surgeries to implant devices meant to control seizures, and sedation, and follow up visits. And then to think how some of it can be helped with diet.
And to know this could all be prevented. Could all have been avoided... Could be stopped. Pleas and appeals have been made for it to stop for decades.
Billions paid by taxpayers for these man-made epidemics of autism, seizures, diabetes, asthma...
The pharmaceutical companies and insurance companies and elected officials do not care. But the taxpayers opposed to paying for Medicaid and food stamps certainly do. And just think about the Medicare and the social security that is about to be paid out - to people who haven't paid in any because they are disabled from vaccines!
Those people - the people in between us and those profiting from the suffering of our children and our families - are the key, if ever there was one.
As my "friends" have told me so many times - vaccine injured children (and their resulting devastated families) are just a "small percantage" of the children who are affected."
We need to get to the people in between us and the companies making money off of our kids' suffering.
That represents a huge percentage of people.
Kathy Blanco, are you there?
Posted by: A Mom | October 07, 2009 at 12:03 PM
today I had the pleasure of hearing nancy snyderman and some doctor on the TOday show blabbing on about how the swine flu shots are safe. Snyderman said something about the "furniture/ingredients being the same and we just re-arranged it in the condo." Hmmmn, reminds me of another furniture story about re-arranging the deck chairs on the Titanic... (pointless if there's no safety in it). You guys will be happy to know that there are some papers out there showing some intellectual honesty and open-mindedness. They actually printed my letter in the Calgary Herald (and Alberta is pretty conservative). I was pissed that the minister of health described fears of the swine flu vaccine as being about the needle prick. I said something about being a lot more worried about adjuvant (for the non-pregnant people) and the thimerosal and named the neurotoxicology study. Told the minister to not be so condescending and talk about the real issues with the vaccine. They actually printed it!!!!
If Obama doesn't do something about this confluence of information (high autism rate and reputable studies showing problems with hep b vaccine and thim) then he is not the stand-up guy I thought he would be.
Posted by: jen | October 07, 2009 at 12:00 PM
Perfectly said, Mark. I feel exactly the same way...
Posted by: Cathy | October 07, 2009 at 11:59 AM
The Boston Globe is the poor Chowder eating cousin of the New York Times. It almost folded last year, if you recall. The Times owns it. My friends used to own the Globe. I was in high school, not sure it was much more intellectually honest then. I'd like to think so, before pharma ads replaced the lost classified ads (Thank you ebay and Craig's list) and the disappearance of local department stores - now there's one Macy's ad instead of an ad for Jordan Marsh and Filene's.
Posted by: Stagmom | October 07, 2009 at 11:08 AM
Also consider nepotistic cronyism -- the family and professional influences on newspaper journalists.
At the Minneapolis Star Tribune, one reporter recently wrote that her mother is/was a public health nurse.
Another health reporter wrote some time ago that a brother-in-law works in infectious diseases -- no doubt her source for epidemiological statistics.
Also I've been told that another health writer used to work for the Mayo Clinic.
It's easy for reporters and editorial board members to delude themselves into thinking they are preserving the public good by not stirring up controversy and panic. Instead they passively help increase the body count and actively participate in the official denial.
Posted by: nhokkanen | October 07, 2009 at 11:02 AM
This is my hometown paper. I share you frustration..
The Boston Globe buries news about the 1 in 91 autism increase and grossly underreports the autism crisis meanwhile they hype the swine flu ...these once reliable news sources, are turning into infomercials for industry..
and who controls the media??? see the full page drug ads ...the Globe has to keep their corporate sponsors happy ya know
Posted by: Sarah | October 07, 2009 at 10:45 AM
Well said, Mark. :-)
Posted by: Erik Nanstiel | October 07, 2009 at 10:25 AM
Thank you, Mark. You speak for all of us. It's revolting hypocrisy and you were very restrained and civil considering. They do deserve to go out of business.
Posted by: Gatogorra | October 07, 2009 at 10:23 AM
Increased competition and the introduction of econometric methods have radically changed mass media. Media consolidation has reduced both the breadth and depth of stories covered by mass media. Cost reduction leads to the elimination of foreign bureaus and correspondents in favor of news releases by political parties or businesses.
Ratings and audience tracking promotes the most simplified writing and articles with the widest possible interest. This often means celebrity gossip, entertainment marketing, and sensationalism. Complicated argument is made as simple as possible in order to "sell it" / communicate to the largest number of people possible.
These lead to the argument that television contributes to 'dumbing down'. The same thing happens in our educational system but that's another email...the point being is that the critical points of this epidemic WILL NEVER be fully investigated, and sound bites, and radical pharmacuetical ideas and platforms will come to fore. We shall be lamented on, but we shall never get our due.
It's one thing to have empathy for our children and families, quiter another to investigate why we need empathy. The why part, as to why this is happening, is questioned, and even mothers are made out to be story tellers, or that they truly can't see developmental signs or regressions.
Further, we are made out to not be legitamate in our concerns because we are not backed by some horrific junked maligned study as is done with CDC or NIH. That we do question environmental damage leading to autism is never the point, only genetics, and that "that small of a dose" or "that toxin" can't be the full reason for this epidemic? No, they say key words like mystery, like better recognition or diagnosis, or awareness. Do they ever take into account the perfect storm of autism? That between what mothers are subjected to which goes directly to fetus, to the birth process, to the vaccine madness, to further degredation by our food supply etc, that we are creating a mystery, where there is no initial or end point of damage? How entertaining...like the mystery murder shows we are? How intriguing and fodder for people to muse on. And how distant can it become, when people can say, well, that's not going to happen to my child...
The funny thing is...it is happening to their children..and like good minions we are, we are left to deal with a nightmare, which takes up all advocacy time we have, sick children take a lot of our times. Indeed, the collective conscience has been shaped and molded by every sound bite they can. To question any authority nowadays, is conspiratal. To ask questions and to achieve a microphone, is almost impossible. Those who do, are still maligned. Or, told to quiet down/moderate the message...sigh...outrage is not politically correct these days, I suppose...
Posted by: Kathy Blanco | October 07, 2009 at 10:20 AM
What I thought was amazing was that Monday's Nightly News headlines:
Swine Flu vaccine ready, but questions still remain on safety.....
Autism Rate now 1 in 91, but we still have no idea why....
F@*KING Priceless!
Posted by: Steve | October 07, 2009 at 10:03 AM
Here! Here!
Posted by: Christina Liberatore | October 07, 2009 at 09:17 AM
Mark...you are quite right to challenge main-stream "journalists"...as did RFK at Jenny's Washington, D.C. rally...for too often assumimg the role of "propagandists" for the "life sciences industry".
I suspect the failure of main-stream "journalists" to maintain their professional responsibility to be "fair and balanced" on a whole host of issues...vaccine safety being just one...has caused the dwindling drop in circulation numbers that now threaten the financial security of the most prestigious newspapers in the country.
Be encouraged because NO amount of pharmaceutical advertising monies will compensate for the continuing drop in circulation numbers.
Posted by: Bob Moffitt | October 07, 2009 at 09:03 AM
That pretty much sums up my frustrations this week. If I hear another person:
1. worry about the damn swine flu or
2. say something about how the increase is due to better diagnosing (or over-dx)
then I will go crazy.
Posted by: Cristen | October 07, 2009 at 08:53 AM
It's journalistic integrity, twenty-first century style. The editorial decision boils down to three choices. 1) Tell an outright lie -- that the numbers appear to be going up, but it's just better diagnosis and broader diagnostic criteria. 2) Tell the truth, and piss off a lot of powerful folks, some of whom are important to the paper's revenue stream (and Lord knows, these are tough financial times for the print media). 3) Pretend the story doesn't exist, and go with the sensationalism the masters are feeding you.
Maybe this isn't necessarily a new phenomenon. There was a great line spoken by an editor towards the end of "The Man Who Shot Liberty Valence:" "When the legend becomes fact, print the legend."
Posted by: Wade Rankin | October 07, 2009 at 08:24 AM
ps they are all going out of business
Posted by: kn | October 07, 2009 at 08:18 AM
You tell them, Mark! The Boston Globe could be the Chicago Tribune or the NYT (actually the NYT is THE public relations arm of the CDC)or any of our dwindling, local, bullshit rags.
Yellow journalism is getting old.
Posted by: Teresa Conrick | October 07, 2009 at 07:03 AM
Excellent. Thanks Mark. It's certainly how I feel about the media in general. They are the public relations arm of the CDC. They are certainly not questioning anything.Is their such a thing as investigative journalism anymore?
Posted by: Andrea | October 07, 2009 at 06:47 AM
David Simon on being a journalist:
"...The great disease there is that our points of view are decidedly similar: middle class, maybe a little less white middle class than they were. It's the point of view of the collective consciousness of that centrist point of the country that we're writing for in all of our demographic surveys. We're looking where circulation grows, and it's always that guy with the 2.4-car garage and the 3.2 kids, and he has an information-sector job. We're all really sort of writing for that guy.
The horrible thing about that is that after a while, the stories don't capture anything but our own sense of what the story should be."
Posted by: Natasa | October 07, 2009 at 05:40 AM