ARI Calls for an Immediate Federal Response to the New Autism Figures Released by NSCH
Yesterday the Maternal & Child Health Bureau of Health Resources and Services Administration (HRSA), US Department of Health and Human Services released a study evaluating the number of children in the U.S. who currently have an Autism Spectrum Disorder (ASD) diagnosis, The Prevalence of Parent-Reported Diagnosis of Autism Spectrum Disorder among Children in the United States, 2007, published in Pediatrics.
The study evaluated data from a National Survey of Children's Health (NSCH) in which 78,000 U.S. households were surveyed to estimate the prevalence of autism spectrum disorders. The households were queried if their child (ages 3-17) "currently has autism, Asperger's Disorder, pervasive development disorder, or other autism spectrum disorder." Go to NSCH to view the latest data – use the search term “autism” to see the data HERE.
Findings:
The NSCH survey estimated the prevalence rate of ASD to currently be 110 per 10,000 which equates to 1 in 91 children ( 1 in 57 boys) between the ages of 3 and 17.
Previous prevalence data from the Center for Disease Control and Prevention's Autism and Developmental Disabilities Monitoring (ADDM) Network reported the average rate of autism among eight-year-olds was 67-per-10,000 in 2000 (the 1992 birth cohort), and 66-per-10,000 in 2002 (the 1994 birth cohort). Data from the NCHS was from the birth cohort born from 1990 to 2004.
For the first time the health survey also asked if the child who was diagnosed with ASD currently has the disorder, and nearly 40% ( 38.2%) responded NO. This finding supports recent research that children diagnosed with autism can recover from the disorder with appropriate interventions, both medical and behavioral.
Investigators also found that non-Hispanic black and non-Hispanic multiracial children had 57% and 42% LOWER odds of having ASD than non-Hispanic white children, and that children whose parents had less than 12 years of education had twice the odds of NOT having an ASD dx child than those with higher education. Another interesting finding is that those who lived in the Midwest and Northeast had higher odds of having ASD than children in the West. Such demographic and geographic disparities deserve further scrutiny for etiologic risk factors.
When investigators broke the data down a little more by age, the odds of having a child with ASD were 54% greater for ages 6-8 years (birth years 99-01) and 83% greater for 9 to 11 years (birth years 96-98). Note that the older birth cohort was exposed to larger amounts of ethyl mercury than the younger birth cohort.
The Autism Research Institute calls for an immediate Federal response to the new data with the same amount of urgency and resources that have been dedicated to H1N1 preparedness. According to Jane Johnson, Director of the Autism Research Institute's Defeat Autism Now! Program "a silent epidemic has been sweeping our country for years and this new prevalence data dictates that Autism be declared a national emergency; no stone should be left unturned in determining what is driving this international epidemic and what can be done to help those affected restore their health."
well it is nov. 1st. and i haven't heard any red aleart sounded by the government. but hey has everyone gone out and injected themselves with the h1n1 vaccine? more kids have autism then have gotten sick criticaly with h1n1 and all i hear about is h1n1. enough already.
Posted by: jill r | November 01, 2009 at 06:25 PM
Jeff's Mom,
My husband and I were also RH Negative type 0 blood. I was given the Rhogam injections for all 3 of my pregnancies as well as being put on the drip. All three of my boys have been diagnosed on the autism spectrum. I have spoken to many families in this same situation.
Posted by: anne | October 07, 2009 at 12:05 PM
I was type O, like all of my family. My mother was a grade school teacher and she decided to get a flu shot back in the 1960's. She reacted to a flu shot, she said she had the flu four times that year, had to go to the hospital with low white blood count,and even in the summer she would start running a temperature. After that she cried and complained with her stomach even to this day! Sounds like some inflammatory stuff going on to me.
My husband and our two children have type B blood. All three of them have a inflammatory thing going on, big time bad.
Don't think it is the blood type, unless type A has a large percentage compared to the other blood types.
Posted by: Benedetta | October 07, 2009 at 10:16 AM
In the UK the white and affluent have lower vaccination uptake then ethnic minorities and those in lower income and education brackets (for example MMR compliance is especially high in areas of South London with predominantly black lower income families)
It would be interesting to see comparable autism prevalence rates.
Posted by: Natasa | October 07, 2009 at 10:04 AM
College educated = well vaccinated (ie...Nurses- Lots of required vaccinations prior to giving birth)
College educated = Higher income in generational history = better survival no matter how toxic.....
less educated = less toxic maybe
I would be curious about the nearly 40% of the children that lost their diagnosis. Was there any correlations with parental education? It requires higher income to treat autism. It would also be interesting the amount treated bio-medically only vs. drugs only and any outcome information.
Posted by: Patrick | October 07, 2009 at 09:33 AM
I wonder, of the children who lost a diagnosis, what does the severity distribution look like? Does it look the same as for those who didn’t lose their diagnosis?
In other words, were the less severely autistic more likely to have lost their diagnosis?
Even if this were the case I would think it would still be significant.
And if those children with more severe autism experienced a true recovery or even partial recovery at the same rates as the less severe, then that seems to me to be very significant.
Posted by: Robin Nemeth | October 07, 2009 at 08:11 AM
I was thinking that those with higher education and/or higher socioeconomic status might be in a better position to push for an appropriate dx (whether privately or through publicly funded programs)rather than letting schools do as they see fit- or not, as is often the case. In other words, children of parents w/out a high school degree and/or low income aren't less likely to have a child with autism...just less likely to have it identified as such.
In regard to that high rate of kids losing the dx, I attribute that to two things: those who are in denial of their child's issues (I see a ton of that in my area),and those who don't differentiate between "recovered" (still need support whether biomedical, educational, etc)and "cured" (child needs zero support or assistance at all, in any aspect of his/her life.)
My daughter is one of those kids who could probably "lose her dx" if I were to have someone evaluate her right now who is unaware of her history and current supports in school. She is in 3rd grade and fully included w/out an aide or TSS of any sort and is basically indistinguishable to all but those very experienced with the most subtle traits and issues of autism. She's had intensive intervention in many areas including social skills and has a close-knit group of typical friends. But guess what? IT'S STILL THERE, LURKING! "It" needs to be monitored and tweaked on a regular basis and I can't imagine a time when she won't need that to keep her where she needs to be. There are many other parents who would just consider her "fixed" and move on, even drop the dx and IEP, but I won't be one of them. I want to be proactive concerning her current and future needs, not reactive. So I would not be one of the parents claiming that my daughter has lost her dx.
To Nicole: information collected during evaluation and dx depends upon the facility. My daughter was dx'd at a university autism research center and they collected info on MY diet from MY birth on! LOL! Seriously though, they collected all records from my pregnancy on- they collected the records from my OB/GYN as well as from the hospital where I delivered.
Finally- to Jeff's mom: Reading about your son's loneliness made me cry. Are there any social skills groups in your area for teens his age/functining level to meet and take part in activities? Social activities, drama classes...anything? He shouldn't feel so isolated- it's heartbreaking.
Posted by: Karin Fox | October 07, 2009 at 12:59 AM
I read somewhere that the more educated and higher income parents were more compliant to make sure there children were vaccinated on schedule.
The lower income and parents lacking education were not as compliant to the vaccination schedule for a variety of reasons.
I think this is also why older parents have children with a higher rate of autism.
It is understood that the older more responsible parents and higher educated parents would be more diligent to get their children vaccinated.
Sadly our kids would have been better off if we were less educated and poorer.Then maybe we would have postponed the vaccinations and our children would have been older and had a better chance of handling the toxic load.
Posted by: Richard | October 06, 2009 at 11:56 PM
I'm not clear from this study what the parameters were for the data mining, but some of the findings are certainly interesting.
Some of the findings seem similar to Multiple Sclerosis (MS) studies. MS has often been called the disease of wealthy white women. They have also found geographical differences -- the farther from the equator, the higher the incidence of MS (less the eskimos who have a low rate). In the autism study, it would be interesting to see the prevalence of non hispanic/multiracial with higher education and the prevalence for whites with less than 12 years education.
The 38% "recovered" is incredible. It would be great to see the demographic breakdown and treatment protocols for the 38%. The entire study begs for more research.
Posted by: PhillyMom | October 06, 2009 at 11:45 PM
The autism epidemic is a state of emergency. Will it take every child having autism before the governments wake up?
Posted by: HeidiN | October 06, 2009 at 08:28 PM
I am happy for those of you who have children who are recovering. My 19 year old son was diagnosed at age 3 1/2 with high functioning Autism. By the time he was 12 what advances he had made in speech all disappeared. We had to take him out of public school and couldn't complete home school curriculum because of his loss of expressive language skills. He now goes to a University Speech Clinic 2 times a week for which we pay out of pocket $ 100.00 a week. We have been doing this for four years. This cost is not covered by a school district, not covered by any health insurance, not covered by Medicaid, but out of our own pockets. There is no cure in this house. My husband and I were both 37 years old when my son was conceived. We were both RH Negative type 0 blood. I was given a number of Rhogam injections while I was pregnant and put on a Pitocin drip to induce labor. My son came out healthy with Apgar scores of 10. He developed normally and healthy until about 11 months when he started getting his vaccines. There is nothing else that I can even consider for why my son was diagnosed with Autism. I did everything I could to be healthy and now I've spent the last 19 years trying to help him achieve happiness. He knows he has Autism and is high functioning enough to cry himself to sleep many nights because he is so lonely. He wants to have a girl friend. He wants to go to college and he wants to be independent, but he knows it will be a long time before that can happen because he lacks the communication skills necessary to be able to independent. I am not shocked that the numbers of children who are diagnosed with Autism are getting greater. I see these children everywhere and I never saw one child with Autism while I was growing up. There is something out there and I fear that all the swine flu vaccines will just make this epidemic explode even more
Posted by: Jeff's Mom, | October 06, 2009 at 08:15 PM
Julie;
This year Scientific American -August 2009
had an article on celiac.
Alessio Fasano a directo of the Mucosal Biology Research Center of the University of Maryland School of Medicine, had been working on a vaccine for years for cholera.
After years of work, refining the antigens, when he gave it to the volunteers it caused dirrehea.
He had a pretty good article in this magazine.
What he discovered was - a trio of things.
an environmental trigger, a genetic susceptibility and a leaky gut
leaky gut is the proteins that line the digestive system can be unzipped not only by pathogens but also the person's own body.
This seems to underlie other qutoimmune disorders as well.
To treat celiac may also help cure other conitions a patient may have.
I just wonder if cholera vaccine gave his hispanic volunteers celiac too???
But the article stated that celiac is more common than once though 1 out of 139
Posted by: Benedetta | October 06, 2009 at 07:13 PM
I had never heard that about blood type A being more prevalent for autism. Interesting...I am blood type A and so is my recovering son. How come no one ask any questions when a child is diagnosed? I have never been asked anything....like what did I do during pregnancy...how can "they" ever find an answer if "they" aren't asking any questions!!
Posted by: Nicole | October 06, 2009 at 06:46 PM
More parental education equals babies getting all recommended vaccines right on schedule equals more autism.
As for the higher rates among whites, isn't celiac disease more common among people of European descent?
Posted by: julie | October 06, 2009 at 05:21 PM
Gatogorra, it would be interesting to find out if there are differences in autism prevalence in white and ethnic minority children in the UK. According to a recent National Health Service strategic document (aiming to push for greater MMR uptake), black minority was stated as having much larger compliance with the full recommended vaccine schedule compared to white parents.
Data on ASD prevalence rates relative to ethnicity in UK does not exist, or hasn't been made public. Interestingly enough, (and this may be a coincidence of course) at a recent autism conference here there was a disproportionate number of delegates from black/minority groups.
Posted by: Natasa | October 06, 2009 at 04:54 PM
Dont settle for anything less than everything want a fair and decent deal get attitude.
Asta la vista
Posted by: Robin Rowlands | October 06, 2009 at 04:22 PM
I agree with Robin -- the children who lost their diagnosis in this study may be the most important ones for more than one reason. In addition to what Robin brought up this should prevent insurance companies from denying coverage because autism has historically been untreatable (even though we all know the truth).
NOW can we get guaranteed insurance coverage in the health care bill?
Posted by: ObjectiveAutismDad | October 06, 2009 at 04:18 PM
After the horror wears off and the problem solving impulse kicks in, the distrubution is very interesting. Being a layperson and the mother of Amerindian/Hispanic/Algerian/Caucasian children, I'm in a unique position to wonder aloud about what the differences in rates between race and education might be. In other words, if I inadvertantly repeat anything that could be interpreted as racially insensitive, one can be assured that I'd be spitting in the wind in about four different ways.
The educational distrubution issue is tricky. I'm thinking of the studies showing the doubled rates of allergies among children with higher IQs (susceptibility to allergies can relate to fragile mitochondria). But not everyone who doesn't make grad school has a low IQ. I don't believe for a minute that African Americans have lower IQs on average than whites, but the differences in autism rates could be explained in many other ways. Socioeconomic differences between groups and basic economic discrimination are big suspects: the less money a family has, the less likely they are to be able to make "well child" visits for scheduled shots-- maybe one true advantage to being poor these days.
There might also be otherwise incidental biological differences. For one, a study found that African Americans were less susceptible to brain damage than whites from topical application to mercury compounds.
This was conjectured to be a result of mercury's tendency to bind with melanin (melanophilic), so that those with higher levels of a certain type of skin melanin (darker skin)-- including melanin in the brain (neuromelanin in the substantia nigra)-- acted a sort of trap for mercury, preventing the spread of damage.
I found an interesting study on a black heritage site discussing the difference in organic brain disease prevalence between whites and blacks-- the study hypothesized that increased amounts of neuromelanin in the brains of some (not all) people with darker skin could account for the lower rates of Parkinsons among African Americans. This could have a lot of confounders, but there's something to it nonetheless: like the topical mercury study, it's supposed that neuromelanin can have a protective role for the brain against metals and oxidative-stress-inducing chemicals, though the researchers pointed out that once levels of oxidative stress breech this protective faculty, the protective role of neuromelanin is reversed into a liability and the cascade of damage can be more severe, just not as common.
The role of neuromelanin in either protecting the brain or making it more vulnerable can be seen in cases of Valley Fever (coccidioidomycosis). It up the racial differences in neuromelanin levels: an airborne fungal infection that swept through the west coast turned out to be a "melanophilic" organism-- had an attraction to melanin, including melanin in the brain. Unfortunately when a fungus binds with melanin, the fungus isn't apparently neutralized. African Americans, Native Americans and Asians had much higher mortality from the disease as it induced brain infections much more quickly than for caucasians. The CIA was quite intrigued by the potential to target certain races with biowarfare agents and secretly tested another fungus with a very similar profile to the coccidioidomycosis spore, infecting a navy site to see if African American members of the navy were more susceptible to it.
There's very little on the web about any of this. Organized medicine doesn't seem to have spent a lot of time studying racial differences in terms of helping various races. I found more information in medical texts dealing with racist medical abuse and covert CIA operations and then was able to Frankenstein together some published studies on the web which supported the theories.
The neuromelanin/mercury/oxidative stress theory doesn't really add anything to the discussion of why Hispanic boys are at such high risk. Hispanics in general in the US tend to be as economically disadvantaged as African Americans in some places. But maybe things like the Tuskegee experiment explain why some African Americans may be potentially missing some of those well-child visits on purpose. Hispanics as a group may lack that general distrust of organized medicine and may be more likely to follow the status quo and keep up with scheduled shots.
There's also the issue of blood type. I can't substantiate it but we keep hearing rumors that A type blood is found in those most often prone to autism. The ethnic distribution of A type blood from most common to least is as follows:
Whites
Hispanic
Asian
Black
Food for thought. I'm sure there are a lot of other factors at play here if any funded researchers ever take an interest in it. I won't hold my breath.
Posted by: Gatogorra | October 06, 2009 at 04:04 PM
Dadvocate wrote: Autism Speaks did release a statement.
Ok, I’ve read over their statement. I guess I should have been specific when I said that I thought it would be great if AS could make a similar kind of statement . Like for instance, oh perhaps they could bring up the topic of just what the possible cause might be.
Or, for instance, I was very interested in the statement by ARI that “the odds of having a child with ASD were 54% greater for ages 6-8 years and 83% greater for 9 to 11 years. Note that the older birth cohort was exposed to larger amounts of ethyl mercury than the younger birth cohort.” Of course, that’s just me, that’s what I happen to find interesting and maybe other people don’t and that’s their right. There’s no information given as to how much more exposure children from the later cohort got so perhaps some people might think that this sort of fact is vague or irrelevant. I don’t happen to think so. And I’m frankly a bit confused when they say ‘greater’. (Greater than what?)
But there was something that ARI pointed out about this data that really made me sit up and take notice, and I went to the actual data and it seems pretty clear to me.
Thirty eight percent had once had an ASD diagnosis but then lost it.
The Autism Speaks statement mentions that parents were asked about diagnoses, including whether or not a child had been diagnosed but was no longer diagnosed. But they didn’t mention that according to this study, thirty eight percent of children had LOST THEIR DIAGNOSIS.
Ok, maybe it’s just me, but…
how can they possibly have overlooked that fact?? HOW CAN THEY CONSIDER THIS UNIMPORTANT?!
Shouldn’t there be somebody there who’s pointing this out to the public, who’s saying “Look at this! Look at this!! Who are these children? What is different about them??”
Oh and puhleeeease! Awareness?! We don’t need anymore stinking awareness. We’re aware, already!
I’m pretty darn sure most people don’t WANT any more awareness. They want it to stop. They want it fixed.
Posted by: Robin Nemeth | October 06, 2009 at 03:32 PM
Okay, this article helped clear up a lot of question for me. Thanks.
The nearly 40% I am sure still have some residue, a brain injury just seems to always stay around in lesser forms.
Off the subject;
Thursday at 5:00 eastern time on Fox station, there is going an hour long show that is going to discuss the N1H1 vaccine. It is suppose to be doctors getting equal time for and AGAINEST getting the vaccine????!!!! That should be interesting.
Posted by: Benedetta | October 06, 2009 at 02:23 PM
Autism Speaks did release a statement:
"New Findings Reinforce the Urgency of Autism as a Major Public Health Crisis, Requiring Intensified Action from the Public and Private Sectors"
http://www.autismspeaks.org/press/autism_nchs_prevalence_study_1_in_91.php
Posted by: Dadvocate | October 06, 2009 at 01:05 PM
http://www.canada.com/news/world/Lack+autism+help+Edmonton+murder+suicide+friend/2048132/story.html
Indeed, Jane, NO stone must be left unturned. We MUST know what is causing this tragedy of epidemic proportions, even if it means looking in places that we don't want to look, or risk offending those who don't want to see the obvious. (And make no mistake, SOMETHING is causing this to happen) We must do it now, before any more tragedies such as described in the story above happen to another family.
Reading the above story made me cry this morning because this could have been my own story. The hours of uncontrollable rages and admissions to psychiatric hospitals, the lack of help from the mainstream medical community, the feelings of sheer hopelessness and thoughts of murder/suicide to escape the pain. The terror that my other two children had to endure while they watched their older brother repeatedly beat me and drag me through the house by my hair, as well as their horrified faces as the police carted him out of our house in handcuffs. Thinking back on the horror we endured this time last year gives me chills.
These kids and their families are going through hell and they all deserve answers and appropriate medical care. The poor child in this story was very likely suffering from the same type of excruciating pain that he was unable to communicate, just like my son. The very thought of autistic children in pain, being shipped off to psych wards makes me sick.
Fortunately, my son's story had a happy ending and he is doing well now, thanks to the outstanding work of the clinicians at Thoughtful House, to whom I am forever grateful.
However, I fear that as these children age, there will be many more frightened, exhausted and overwhelmed parents out there that will do as this parent did...escape through death.
Posted by: Jen | October 06, 2009 at 01:03 PM
K Fuller wrote:
That Witznitzer guy was on the news last night, discounting the count because they asked parents.
Yes I saw him as well, on my telly all skeptical about the numbers. He's from my hometown. Cleveland, home of the famous Cleveland Clinic and University Hospitals and home of the future medical mart. I like to call him 'Nitwitzer', but I've heard him referred to as 'Wizzpisser', which I like as well.
But I suppose I shouldn't get snarky. So sorry.
So you say he doesn't like the fact that parents were asked? And yet, the study that I've heard so much about, the one in Britain by Bruhga et al, the one that concludes that there have always been one in a hundred adults who had autism-- that study was done with self-reported data.
They collected data from parents and teachers, and yet the media and public health officials are all over this study as proof that the rates haven't increased.
Hmm.
Posted by: Robin Nemeth | October 06, 2009 at 01:02 PM
That Witznitzer guy was on the news last night, discounting the count because they asked parents. What??? Is the club a popluarity contest and parents are now on a waiting list to get in????
Posted by: K Fuller Yuba City | October 06, 2009 at 12:02 PM
Thank you, ARI.
This coming Saturday I will attend an Autism Speaks walkathon in downtown Cleveland. I will not be walking to help them raise money, however.
If past years are any indication, thousands of people will be there, all wanting to help support those children affected by autism, and their families.
It sure would be great if someone with Autism Speaks made a similar kind of statement there at their fund raising event.
Posted by: Robin Nemeth | October 06, 2009 at 11:46 AM