House committee hearing...rising rates of autism

[Laurie]

You can watch both panels testify before the House committee on CSpan: http://www.c-span.or...sm/10737436113/

 

I think my favorite moment was Rep. Elijah Cummings (Maryland) saying that there's something wrong with this picture. He said there may be too many shots given at one time and suggested, "let's put some brakes on this."

 

I've been working my way through the book The Age of Autism: Mercury, Medicine, and a Man-Made Epidemic by Olmsted and Blaxill. It was especially interesting to me to hear what Mark Blaxill had to say to the House committee. He said it's time to stop investing in the "autism gene hunt" because there's no such thing as a "genetic epidemic". He accused the CDC of negligence and actively covering up the environmental factors involved. He said that 22 year olds are on the leading edge of this epidemic and that we're facing "a tsunami of unmet needs". Scott Badesch, the president of the Autism Society, also said that while people are talking about the fiscal cliff there's a serious cliff when autistic people reach age 21 and there's a crucial need for adult services.

 

A highlight for me was listening to Bradley McGarry from Mercyhurst University. He is the coordinator for their Asperger Initiative program. He said that what they're doing at Mercyhurst "isn't rocket science" and that other colleges can put in place the same supports for students with Asperger syndrome. ( According to McGarry, in the next couple of years 1 of every 100 college applicants will have an ASD diagnosis.) They emphasize self-advocacy, social skills, and academic achievement. They also want to expand opportunities for internships and job coaching to try to lower the likelihood of being over-educated and underemployed.

 

It was interesting to watch. I'll check back to see if anyone wants to discuss.

[dtsmamtj]

I couldn't watch the entire thing, hope to at some point though. I found it interesting the shaking heads in the background.

[PeterPan]

I couldn't watch the entire thing, hope to at some point though. I found it interesting the shaking heads in the background.

 

Why were they shaking their heads? They disagreed with the speaker or they were ashamed?

[pdalley]

I couldn't watch the entire thing, hope to at some point though. I found it interesting the shaking heads in the background.

 

 

 

I followed it through here - http://www.thinkinga...al-hearing.html

 

I know my kids have autism because of a genetics. Not vaccines. My youngest was delayed vaxed - single vial doses at that. He is the most 'autistic' of all three. I can trace these traits back to the Pre Civil War era. I cannot speak for other families but this is what is true in ours. I think there are probably many causes of autistic like symptoms or autism. What works for one child will not work for another. We tried the diets for an entire year with no changes. For some kids it makes a lot of difference.

 

So my perspective is probably quite different than most.

[PeterPan]

I followed it through here - http://www.thinkinga...al-hearing.html

 

I know my kids have autism because of a genetics. Not vaccines. My youngest was delayed vaxed - single vial doses at that. He is the most 'autistic' of all three. I can trace these traits back to the Pre Civil War era. I cannot speak for other families but this is what is true in ours. I think there are probably many causes of autistic like symptoms or autism. What works for one child will not work for another. We tried the diets for an entire year with no changes. For some kids it makes a lot of difference.

 

So my perspective is probably quite different than most.

 

I don't think that's so crazy. Remember that article Michele posted ages ago on facial structure with spectrum? There was actually a statistical pattern that kids on the spectrum tended to have eyes farther apart. Well clearly that wasn't a vaccine reaction, mercy. But you can also find people with vaccine reactions in their path. So there must be a number of ways to get there and types. It just doesn't make sense otherwise. Our SLP told us flat up that a dc with apraxia was more likely to react to vaccines and have it push them over the edge. She had cases where that had happened. So there you have genes + vaccines. Definitely not simple answers. I guess you could dig back and try to figure out whether my ds's apraxia is genetic or a reaction. Actually they've done some studies and same deal, it varies. There was a family in England they traced where the apraxia went back generations and generations genetically. Then you have people with apraxia due to oxygen deprivation during birth or other causes. Not just one way of getting there.

[Laurie]

 

Why were they shaking their heads? They disagreed with the speaker or they were ashamed?

 

 

The head shaking in the audience was more noticeable during the first panel when the doctors from NIH and CDC were speaking. There was one woman sitting directly behind the doctors and I think her head was shaking pretty much non-stop.

The second panel was made up of autism activists, and I thought there was a good mix of perspectives. At least two of the speakers said that they are on the spectrum themselves. Michael John Carley (Exec. Dir. of Global and Regional Syndrome Partnership) believes that autistics are born this way, and that using words like "defeat", "combat", etc. are making an "unhealthy emotional atmosphere". He said that he doesn't believe vaccines are the problem. And Ari Ne'eman (Pres. of Autistic Self Advocacy Network) is the other speaker who identified himself as autistic in case anyone wants to fast forward.

[pdalley]

This was what I was looking for - regarding the head shaking. I thought this was a good point.

 

http://www.thinkingautismguide.com/2012/12/why-wouldnt-autism-parents-want-to.html

[Reya]

There are no "rising rates of autism." There is a rising rate of diagnosis. Not the same thing. Some is because autism used to be under-diagnosed, but a lot is because every "odd kid" is getting slapped with an autistic label these days, just like every unmanageable kid used to get diagnosed with ADHD.

 

The supposed autism-vaccine link was exposed as an outright fraud several years ago. Why is anyone even talking about this?

[Reya]

My grandfather was high-functioning autistic/Asperger's. NEVER diagnosed. My brother was PPD-NOS for years until he became "too high functioning" and got upgraded, but he didn't get his first "label" until he was 8--after 5 years of testing--because they still believed that autistics were all stupid or had "refrigerator" mothers.

[Laurie]

.

 

The supposed autism-vaccine link was exposed as an outright fraud several years ago. Why is anyone even talking about this?

 

 

This is what I used to think, too, but it doesn't account for the people who had "normal" children one day and then their children had horrible reactions to a routine vaccination and were never the same again. I think "autism" may be more of a symptom of a major autoimmune dysfunction...some people may not have an immediate reaction to the toxin, but there may be cumulative effects over time with continued exposures.

 

I've been reading The Age of Autism, and the book is nothing like I was expecting. This is not a collection of stories from parents who think their children were damaged by vaccines. It's a historical look at the role mercury has played in making people sick. Instead of promoting health when used as an antiseptic, a teething powder, or even a treatment for syphilis, mercury caused more harm. Other toxic exposures to mercury also came from wood preservatives and seed fungicides. It's interesting, too, to read about the connections of some of the original Kanner patients identified with autism to chemical exposures their parents had to mercury in agricultural and medical settings.

 

I used to believe the medical people who say there's no link but I'm not convinced anymore. I will say that our pediatrician has been very patient with me over the years as my views about vaccines have changed. I listen to her, she listens to me, and she even ordered the bloodwork/titer I requested to see if my dd really needed another MMR shot just because she was the right age to get the shot. My own dr. knows my concerns and just calls me "vaccine phobic" when I turn down flu shots, etc.

[Reya]

>This is what I used to think, too, but it doesn't account for the people who had "normal" children one day and then their children had horrible reactions to a routine vaccination and were never the same again.

 

There aren't any.

 

ONE girl was left severely brain damaged by a vaccine reaction. She was not autistic before, and she is not autistic now. She is permanently intellectually disabled--one out of many, many millions of children who have had the vaccine.

 

Kids get lots of vaccinations. And rarely, kids have unrelated severe, life-changing health crises, such as a sudden stroke, a severe electrolyte imbalance, or some other incident. Brain damage is not autism, but these days, lots of kids aren't autistic are getting autism labels--for example, MANY MR kids are getting autistic labels because they often have rocking and self-stimming, they are often nonverbal, and they often get tied to rituals. These kids aren't autistic. They're MR. The autism label just makes the parents feel good by letting them believe that there is a great intelligence "locked in" there somewhere. Parents have a normal child who undergoes a crisis, leaving them damaged, and if they happened to also have had a vaccination within the last few days or weeks (which will account for a LOT of ALL young children), they often blame that because other people have.

 

The reality is that dramatic vaccination reactions are one in several MILLION, and any vaccine link simply disappears when ALL the children who have similar health crises are considered.

 

This is, of course, not even taking into account the vast majority of vaccines-caused-my-kids-"autism" claims but rather the cases where there are severe and sudden deficits. In most cases, parents just don't realize there is something wrong with their kid that's been there all along until the kid starts missing milestones. This is far more common. I can't count the number of parents I've met who were SHOCKED that their kids were disabled when they got to school, and I was like, "Lady, I knew something was up when your kid was 18 months old." (Don't say it, of course.) Others don't see the INCREDIBLY OBVIOUS signs until their kids are 2 or 3 and swear it's all BRAND NEW. Many of those kids aren't actually autistic--they are just SPD or have an executive functioning disorder or are "something else quirky"--but these days, so much gets called "autism" that isn't because it's a trendy diagnosis.

[CarolineN]

There are no "rising rates of autism." There is a rising rate of diagnosis. Not the same thing. Some is because autism used to be under-diagnosed, but a lot is because every "odd kid" is getting slapped with an autistic label these days, just like every unmanageable kid used to get diagnosed with ADHD.

 

I absolutely disagree with this. I have 3 sons with asd and it goes way beyond "odd kid", even for my highest functioning child.

 

I am skeptical about the vaccine link, though.

[geodob]

Though a major concern with vaccines, is that often doctors don't first do a test for an adverse immune response to vaccines?

Where this needs to be compulsory, not just recommended.

So that a parent can be confident that their wont be an adverse reaction.

[Guest]

I used to feel that linking vaccines to autism was absurd until I read Dr. Bock's Healing the New Childhood Epidemics. When someone looks into it a bit deeper, you can see a lot of logic in their claims also. I agree that autism, even in its high functioning forms, goes beyond "odd kid" and if professionals are diagnosing "odd kids" with autism then there's a lot to say about doctors and accuracy in the diagnostic process these days. By this logic, all diagnoses are questionable.

 

There is definitely a rise in autism and I feel there are many reasons for it. Looking at my own family history and that of my husband's there have never been any such diagnoses, or other genetic disorders. I can see what would indicate possible social issues in some members of the family, and the possibility of undiagnosed Asperger's, but there is no other record beyond that. All we have that we know of is sensory issues coming from my mom's side of the family, which we always took as quirks, since we had no idea that it is now considered a disorder. SPD can exist on its own so by this logic all I am looking at is SPD with my kids. Dunno... but as far as I am concerned, I see more, and there are many cases of official ASD diagnoses where the family history does not support it. So... there has to be more than just genetics involved.

[Reya]

>Looking at my own family history and that of my husband's there have never been any such diagnoses, or other genetic disorders.

 

AS isn't a "genetic disorder." There age genetic factors, but it's also environmental. Of course there haven't been "any such diagnoses"--until the last 20 years, no one who was at all functional got an AS diagnosis. Didn't mean they didn't have it!

 

Tons of the kids getting diagnosed now would have been given ADHD labels 20 years ago. Some actually are on the AS. Most aren't. And yes, I do say MOST. A few are just poorly behaved. A number are immature for their age, with poor executive function, but if they hadn't been put in an academic environment until age 8 would not be noticeably less able to cope than other kids--these are the "late bloomers," who are no longer allowed to bloom late. Some are just plain ADHD. Others have SPD and NO autism. A big fat hunk also have NVLD. In fact, NVLD is heavily underdiagnosed while autism is overdiagnosed. And, of course, there are lots of kids who are just MR and are given an autistic diagnosis on top of that because--no surprise--they are nonverbal, socially delayed, and head bang or hand flap. That's not autistic. That's just MR.

 

Altogether, these fake diagnoses are probably at least 70% of the people being diagnosed today.

 

The new DSM IV will help weed out some of the absurd misdiagnoses, but I still think the bar is set WAY too low for autism and doesn't properly exclude other conditions. I would crank the total requirements up to 9, with at least 3 of 4 in the first category. And thank goodness for C, which weeds out many kids who are just plain MR. http://www.autreat.com/dsm4-autism.html

[Reya]

I absolutely disagree with this. I have 3 sons with asd and it goes way beyond "odd kid", even for my highest functioning child.

 

I am skeptical about the vaccine link, though.

 

Your kids might be on the AS. Or they might have another REAL issue that's misdiagnosed. I'm not saying "odd" is the end of it--it's the beginning. Kid is different. Kid clearly has something "up." Kid gets AS label.

 

If your kids are correctly diagnosed, it still doesn't mean that tons of kids aren't misdiagnosed all. the. time. right now. Like the shooter in the CT school--if he's Asperger's, I'm Santa Claus. He killed A to hurt B. That's not something ANYONE who is on the AS understands intuitively. Bad diagnosticians are slapping the AS label on every emotionally disturbed kid who walks through the door.

 

This is REALLY significant for AS research because if you have a bunch of people who aren't really autistic in the studies, who knows what REALLY helps?

[pdalley]

 

Your kids might be on the AS. Or they might have another REAL issue that's misdiagnosed. I'm not saying "odd" is the end of it--it's the beginning. Kid is different. Kid clearly has something "up." Kid gets AS label.

 

If your kids are correctly diagnosed, it still doesn't mean that tons of kids aren't misdiagnosed all. the. time. right now. Like the shooter in the CT school--if he's Asperger's, I'm Santa Claus. He killed A to hurt B. That's not something ANYONE who is on the AS understands intuitively. Bad diagnosticians are slapping the AS label on every emotionally disturbed kid who walks through the door.

 

This is REALLY significant for AS research because if you have a bunch of people who aren't really autistic in the studies, who knows what REALLY helps?

 

The whole press armchair diagnosis thing is driving me nuts. I have made my displeasure at the local media known - asking them how they can say such a thing when in reality only a trained medical professional can diagnose the shooter and one who actually examined him. Which, thanks to HIPPA, they would not have access to. A random remark from an estranged brother does not a diagnosis make.

 

 

Above all - autistics are rule bound and they DO feel empathy, they just don't express it the way 'typical' people do. The executive functioning deficits would render my children incapable of such a thing even if their strict rules - one of which is we do not harm others - would permit such an act. But people will hear autism and connect the two - thanks to an irresponsible media that doesn't care about facts - they care about being first.

 

I have a slew of ancestors that would be diagnosed with Aspergers today. They were considered quirky in previous generations. My Great Uncle for example - was a Naval Engineer who read math books for enjoyment. He was socially awkward to some extent - a workaholic - but he was lauded in his profession. On that side alone I can trace these traits to Pre Civil war.

 

I read that book and I know that vaccines did not cause these diagnoses for my sons. My youngest had single dose shots - spread out - one at a time. Not one reaction whatsoever. He is the most classically autistic of the three and has been since he was an infant.

[Guest]

Reya, I find yours posts here very insulting. You are basically telling a majority of parents on this board that their kids are not autistic, they are just MR, and those with ADHD diagnoses are primarily brats. And you know better because...? Are you a medical doctor? In any case, I would rather not push this any further so I will just walk away. Glad you have things all figured out for us!

[amo_mea_filiis.]

There are Irish (?) and other folk tales that tell of changelings. These stories sound very much like regressive autism. If environment plays a part, there had to be something other than vaccines. The stories i have read were way earlier than even the thought of vaccines.

 

I do agree that some misdiagnosing is going on. Around here, for example, if you/your child needs mobile therapy or an aide in school, you will see the only psychologist that evaluates and decides need, and your child will walk out with a diagnosis of bipolar and ADHD, even if the child is 2.

 

Where do the statistics for disorders come from? Seriously.

 

My ds does not have autism. I am close to sure about it. However, if he is evaluated, or observed and diagnosed primarily on history, it fits. If one takes the time to get past his moment of avoiding eye contact and very anti social (socially inappropriate) behavior, anyone could see his lack of autism.

 

Knowing a few people means nothing, i know, but i know a few people who truly believe that their kid changed, but pictures and video of babyhood tells a different story.

 

I think I'm agreeing and disagreeing here. Lol. Dd does have asperger's/asd. Ds does not.

[itsheresomewhere]

Reya, I find yours posts here very insulting. You are basically telling a majority of parents on this board that their kids are not autistic, they are just MR, and those with ADHD diagnoses are primarily brats. And you know better because...? Are you a medical doctor? In any case, I would rather not push this any further so I will just walk away. Glad you have things all figured out for us!

 

 

I agree. I have a couple of friends in research that would disagree that genetics doesn't have a role in this for certain kinds. I used to be pro vaccine but life and work have shown me a whole other reality. One friend who is a researcher in certain vaccines was pro vaccine but wouldn't allow her kids to have any now.

[Guest]

I wouldn't say I disagree with vaccines. I agree with Dr. Bock about following a more moderate approach. He is a DAN (Defeat Autism Now) doctor but does not advocate against vaccinating. Some people just don't bother researching the other side before passing judgement. (ETA: I am not refering to your post itsheresomewhere, with my comment)

 

I was also very iritated to see the death of 27 people being used here to justify ones claims. It is Christmas and 27 families will be mourning their loved ones while the world uses this to justify gun control, or med control, or whether there is misdiagnosis of Asperger's/ ASD and ADHD. Real shame :( ! Lets just mourn the dead and hug our kids closely this Christmas. Some parents out there will not be able to do the same :( !

[Guest]

Merry Christmas to everyone! I think I need a forum break.

[Laurie]

. Now that he's had three separate IQ tests by doctors, we now know that he is mentally retarded, with autistic behaviors and borderline ADHD tendencies. But he is not autistic nor is he ADHD. I often wonder if a school psychologist would have diagnosed him with autism, just based on the fact that school evaluations usually aren't nearly as thorough as private evaluations, just based on funding, time, workload, etc. If so, that would have been an incorrect diagnosis.

 

FWIW, I was told by the special ed. department of our local school district that they don't "diagnose" but they are only able to "assess for services". This was many years ago so maybe school psychologists are allowed to make diagnoses now?

 

It would be interesting to know if the rates of mental retardation are also rising in our country. Whether a child is called mentally retarded with autistic behaviors or autistic with mental retardation, is there something going on in the environment that is causing these problems? When I look at the effects of mercury here: http://www.epa.gov/hg/effects.htm I see that mercury can cause neurological problems. So if kids have been exposed to it before birth because their moms ate a lot of seafood, or after birth because of the preservative in the vaccines, or other environmental exposures, then they have still been damaged by something.

 

Now we also have these awful CFL light bulbs to deal with, which also contain mercury. Just reading the EPA instructions for cleaning up a broken bulb is frightening because the vapor is hazardous. How many people are going to clean up and dispose of these darn things properly?

[itsheresomewhere]

 

FWIW, I was told by the special ed. department of our local school district that they don't "diagnose" but they are only able to "assess for services". This was many years ago so maybe school psychologists are allowed to make diagnoses now?

 

It would be interesting to know if the rates of mental retardation are also rising in our country. Whether a child is called mentally retarded with autistic behaviors or autistic with mental retardation, is there something going on in the environment that is causing these problems? When I look at the effects of mercury here: http://www.epa.gov/hg/effects.htm I see that mercury can cause neurological problems. So if kids have been exposed to it before birth because their moms ate a lot of seafood, or after birth because of the preservative in the vaccines, or other environmental exposures, then they have still been damaged by something.

 

Now we also have these awful CFL light bulbs to deal with, which also contain mercury. Just reading the EPA instructions for cleaning up a broken bulb is frightening because the vapor is hazardous. How many people are going to clean up and dispose of these darn things properly?

 

Schools are not allowed to diagnosis here. I do wonder about the rate of mental retardation too. I hate CFL bulbs and love that LEDs are now a reasonable price.