To Dr. Germain, MD:
"If it were a virus I expect it would have been identified long ago." --- well, well, knowing as we do that 50 or so novel viruses are identified (read ‘discovered’) every year, do you really think that we know everything there is to know about viruses, and that we really can identify those whose existence we are not even aware of? (Could you please provide examples of ‘efforts to identify’ viruses in autism, and whether those efforts included yet unidentified viruses?).

Here is a brainteaser for you Dr Germain:

A large number of HIV positive children develop neurological dysfunction. Symptoms of Paediatric Neuroaids include impairments in language, communication, play and social skills, repetitive actions (rocking, spinning etc), behavioural disturbances (irritability, tantrums etc). Basically all the checklist diagnostic symptoms of autism. (is television to blame?). There is often regression of previously acquired skills – those who talked and were developing normally suddenly regress into above symptoms. Luckily many (but not all) of those children respond to ART treatment and recover their neurological function when HIV levels and CD4+ counts are brought under control. In other words they recover from autism. BUT it seems that only children with certain chemokine genetic polymorphisms are at risk of developing HIV-induced neurodevelopemental/ neurobehavioural dysfunction. So Neuroaids a genetic disorder? (since there is a clear genetic risk...). What would we diagnose those children with today if HIV was still amongst unidentified pathogens? Do you think providing those children with ‘nurturing environments’ is really all they need in order to thrive? Do we really not want to treat their ‘autism’ biomedically? Do we ignore their health problems as ‘just comorbidities? How do we know for certain that some/most/all of children diagnosed with idiopathic autism today are not carriers of tomorrow’s HIV?

PLEASE ask yourself the following: ---------------- Imagine for a moment that this was 1982: a child comes into your practice exhibiting all the symptoms of moderate/severe autism. There is no mistake about it, and you diagnose that child with Autism. He is not much different to every other child you diagnose with autism. He exhibits many health comorbities that you (rightly) believe are just comorbidities and are not causative of child’s autism. Then few years down the line you hear that the child had been identified as HIV+ and is receiving treatment. His health has now improved enormously, but so have his symptoms of autism. One day you get to meet this child (now teenager), and witness that all the neurological and behavioural symptoms have receded. The child is communicating and interacting with the world in a typical manner. What do you call this child now? Would you say that television played a role back when you first diagnosed him?

BUT MOST IMPORTANTLY (and I really hope that you give this some thought) – how does the above (real life) story make you feel? On a professional and personal level?

I hope I'm not the only one who finds this assertion by Dr. Germine shocking: "Now is not the time to say it is caused by this or that. The prevalence is still going up, most likely meaning that those with some genetic predisposition are more frequently developing the disorder."

I suppose we are to wait until everyone is autistic. Then the prevalence cannot go up any further and perhaps we can get down to the business of finding what caused it in the first place.

Or -- just a crazy idea here -- we come to grips with the fact that there is no such thing as a genetic epidemic, that something is CAUSING those with genetic predispositions (or epigenetic changes in those without genetic predispositions) to suddenly explode with autism, and that it might be a good idea to figure out what that mysterious something is NOW before it happens to more people. {coughvaccinescough}

You are right, doc. NOW is not the time to say "it was caused by this or that". The time for that was TEN YEARS AGO.

It seems to me that it is easier to react than to act, and to do so requires devaluation those who give suggestions.

Yes, association does not the same as causation, this is a simple rule of epidemiology and it has not changed. This is because statistics are done using the Fisher method, which is atheoretical. Bayesian analysis is neededt to support the assumptions implied be Fisher statistics. One study often proves very little, metanalysis of many studies proves much more. Unfortunately, most or all the commentators that have tarnished my reputation without actually understanding fully what the statistical methods are and what they can tell us. I am being mocked for saying association does not prove causation - all of the physical or medical problems

It is easy to be ignored by the ignorant, The sperm as no mitochondrial DNA, the egg carries all the mitochondrial DNA to the offspring. The Y chromosome always comes from the sperm, feelings are XX and males XY. If the mitochondrial DNA were involved to any reasonable extent, ASD's would be passed done strictly along the female line. I do not believe this is the case. Autism prevalence according to various studies is 3.2 to 7.6 times higher in males than in females. X is very important psychiatrically. The ratio of males versus females suggests that a recessive gene on X may be involved, which would always be active in males but require the two X's to share the same genetic abnormalities in females. The role of serotonin and response to serotonergic medications would support this idea, or maybe its another blind lead. I am not looking for a Noble Prize, just a little respect, not being publically humiliated. I treat my patient's well, and parents and family have been happy with my care - because I really do care, and I really do know what I am doing. In this area I have been a clinician, not a researcher, although I have done research in many other field within outside of psychiatry. Who am I treating, the parents or the child? If a parent says it is caused by this or that, I let them believe whatever they would like. Their treatment of the child is much important, as well as plans for future care, as many continue to live with their parents well into adulthood, and when they become incapable of caring for the disability or die, they are often are thrust into a dysfunctional institutional setting.

My message was that autism is multifactorial. Concordance in identical twins vary with the study so: 1) Much of autism is related to genetic predispostion, 2) other factors must be involved. So, it is multifactorial. The "new research" that I am said to be ignorant of has not, to my knowledge, not proven that toxins or vaccines are involved. Studies of the MMR vaccine have been negative, yet mothers are avoiding the vaccine, leading to a measles epidemic.

I recently worked as a psychiatrist in a school that had a large proportion of autistic children. Staff were literally abusing these and other children, yelling at them, physically restraining them, I putting them in padded cells on minimal provacation. I resigned after two weeks and sent letters of protest to the authorities. I received no response.

I have been involved with the UC Davis group and have attended their meetings. I am up to date, but the new rave sometimes is used to negate all past research. There is plenty of room for various opinions, and I assure you, mine are well informed. All of the medical symptoms may either 1) reflect genes that common to ASD and medical/neurological problems, or 2) Reflect signs and symptoms of autism. It is quite doubtful that most have an role in causing autism. A young adult patient of mine has a history of sensory deficits, including early history of being hard of hearing and having a severe refractive abnormality that was not corrected in the early stages of development. Did these deficits cause his autism? I really can't say. His father had Asperger's Disorder and his mother, whose mitochondrial DNA he inherited seemed quite normal.

People have accused my of saying autism is genetic, when what I really said was the genetics was a factor, which has been proven beyond doubt. Autism is a "pervasive developmental disorder," so why is it such a crime to look at developmental issues and genetic predisposition? Now is not the time to say it is caused by this or that. The prevalence is still going up, most likely meaning that those with some genetic predisposition are more frequently developing the disorder.

What can you do besides condemn me and other psychiatrists?
Look at the neglect of autism by psychiatrist who are doing cursory evaluation and care to make money and aren't really involved with their patients. Really caring is not the problem, and I'm afraid that the other specialists that you admire because they tell you convient lies about autism no being psychiatric at all, in the end I have seen them doing more for the denial of the parents than for the child. Do an inquiry of how these children are mistreated and abused. It may be a minority of schools, or may be more widespread. In some schools they do an excellent job, but these are special schools, which the autistic child really needs as they actually show some remediation of signs and systems. All autistic children deserve such care. So, advocate for this. I am not the enemy, just a psychiatrist, physician, and a scientist who dared to enter such a hostile list. The anger is obviously, and is actually justified, but displacing it on me is not.

To all,

Autism and other pervasive developmental disorder are multifactorial. Fully controlled studies are almost impossible to do. However, there certainly is a genetic component. My point was the opposite of what is stated - the concordance has been done for identical twins separated at birth. You should be very lucky if you brought your child to me, ASD are generally missed or misdiagnosed. Mitochodria have DNA too, but if it were strickly be mitochondrial DNA we would expect it to be transmitted strictly on the maternal line. If it were a virus I expect it would have been identified long ago. Vaccines have been ruled out in a very large study. I know of no assocation of lead and ASD. The recommendation of the American Pediatric Association is no TV prior to 2 years old. Genes serve more than one function so the comorbitity is not surprising. The bottom line is that ASD do not respond well to medications, and that the psychosocial treatment we give these children and adolescents is disgraceful. I hear no outcry about this. I studied ASD under Chris McDougle, a world expert, and have seen hundreds. It is most convenient psychological to deny developmental factors and therefor deprive infants and toddlers real human contact. I'm sure the industry loves this, and that the society and family gain some solice in knowing that their compliance with money over love has nothing to do with it. My recommendations stand - uncertainty deserves prudence, not ignorance. You all can deny what you wish - the less you are involved with your youngstars the less they are involved in the world - very simple. Denying this, you project and externalize blame on nonsense. The toddlers comment is a low blow, in keeping with your attitude "ignorance is bliss." Stand up and fight for the proper developmental programs for this young people instead of pointing the finger. By the way, there is a very firm finding that in areas of high precipitation and youngsters being kept by the television rather than active outdoors there is an increased rate of ASD. You all would rather abuse than use an expert, and it's your loss.

Mark Germine

Dr. Germine:
Am I understanding you correctly.
That the rise in autism is caused by;

1.)Mother's not staying home with their babies at all?
2.)Too much television and video games are baby sitting these kids as the parents are absent?

But you do think it is not genetic?

My first reaction to Mark Germine's post is, THANK GOD I NEVER TOOK MY KID TO A PSYCHIATRIST.

You say that association does not imply causation, but at the same time, you talk about concordance in identical twins as though that proves a genetic-only cause of autism?

That's association, not causation. Those identical twins received identical vaccines, at identical schedules, from the same batches. Those identical twins were exposed to the same environmental toxins, whether from vaccines, lead poisoning, or the famous highway fumes. They didn't grow up in bubbles, so it's completely unscientific to assume causation from genetics there.

Then again, I would have expected that a psychiatrist--an MD, for crying out loud--who claims expertise in infant and child development might actually know that the word "toddlers" is not spelled "tottlers."

Dr, Germine,

Autism parents are reporting physcial symptoms like:

Chronic diarrhea
rashes
parasitic infections
seizures
GI inflammation
high viral titers
excessive urination
bacterial infections
constipation
not eating
food allergies
lack of energy-listlessness- child is in a fog

If a parent were to approach you with the above list wouldn't you send them to a medical doctor??

now either our kids are misdiagnosed or the medical community is suddenly classifying these symptoms as psychiatric ... looks to me like medical community is just passing the buck to you psychiatrists. They don't want to deal with our kids or maybe they don't know how to deal with all these problems.

If you really want to see what's going on you have to get in the trenches in our community .. join a autism parents yahoo group. It will open you eyes.

More meetings with no results except - "Hey, let's do more gene studies" and "Boy, all these moms of autistic kids are old". Katie we appreciate you and everyone's efforts in attending meetings. I am completely frustrated with our government and the lack of urgency. Even more frustrating is the fact that we as a community are limited in our ability to get in front of these folks. First, they don't want us to attend, obviously, second, many of us are drowning in so much dept because of medical expenses we lack travel funds, and third it is very difficult to leave our children for several days. This all plays into the nay sayers hands. We are a community that has come together because of the internet. I'm not giving up - I am the Voice of the Voiceless.

http://www.youtube.com/watch?v=rQqNyLA9_h8

We need to organize, we need to make phone calls relentlessly, we need to march. The government will continue to bury it's head in the sand, ensure that studies show no link between vaccines and autism and try to silence us. We NEED to draw the line in the sand and take a stand for our kids... NOW!

"Bearman also hypothesized that some of the increase could be the result of a virus."
ns.

STOP AUTISM NOW

"Dadvocate, while I agree with much of what you post, the Chief Science Officer of AS is a psychologist - how is that any better for the reality of autism than a psychiatrist?"

A psychologist might waste our time and money, but at least they can't pump our kids full of Ritalin or Risperidone. A zero is better than a negative.

Dr. Germine,

Your narrative of "I am a psychiatrist with many years experience" has to be one of the most disturbing passages that I have read in years. Your ignorance is vast. Autism is a gut/brain disorder triggered by an environmental insult in many of the cases - vaccines being a HUGE causative factor.

Your summation of what autism is: "a host of psychopathologies and cultural problems have arisen as a result of misplaced priorities that detract from the necessary predicates of infant and child development"..."primarily genetic," "perinatal stress,"...."not curable"

This is just profoundly incorrect information, has not one shred of scientific backing and you should be embarrassed and ashamed for posting it yet I doubt you are.

Thank you though, for again showing us all how Psychiatry has no business in dealing with autism.

two words, XMRV and Vaccines, ok, that's it.

Egad. Dr. Germain. You present, in your own words, "Exhibit A" why the psychiatric profession (with few exceptions) has utterly failed our community for too many years to count. ANYTHING but a neurobiological answer is preferred, even if it's insanity like too much TV, living by freeways, or moms who go back to work too early after giving birth and aren't nuturing their kids. The ghost of the criminal Bettelheim rears it's ugly head...."woooo".

Really, Dr. Germain, please consider attending IMFAR this year if you treat patients with autism and learn some things to actually help them, like the concept of treating "subtypes" with different protocols. Also, please read the consensus statements from the leading clinicians and researchers specializing in autism have created in the many meetings that Autism Speaks their predecessor organizations have readily available on their websites.

It is really, really frustrating when we cross paths with too many professionals in your guild. You guys hold back medical progress. I advise most folks to run the other way when encountering a child psychiatrist, unless they have an autism specific practice and actually know a few things. People are far better off consulting neurologists, gastroenterologists, good developmental pedias, and other professionals who have specialized practices in autism spectrum disorders.

Does not someone want a Nobel prize for finding the cause... or at least "one of the causes" of Autism ???

After about 20 years, one would think someone would want to go down in the history books for finding the source of the problem.

I would guess Dr. Offit or Dr. Germaine hope to win a Nobel prize for creating medical telephone surveys /debunking whatever a parent may say....

They are certainly world class debunkers....

Dr. Germine,
Your theory, "It may be that the careers, parenting practice, and urban cultures are involved, again, in the severity of these illness, which then lends itself to recognition," has not been well thought out and possibly results from not keeping up to date on the developments in autism research. Like so many speakers at this recent meeting on prevalence, you are out of touch with the reality of autism and the recognized involvement of environmental factors creating metabolic, immunological, neurological, gastrointestinal and endocrinological problems that are significant players in the etiology and expression of autism. I would suggest you bring yourself up to speed on the topic by first reading Dr. Francis Collins' statements about what is currently known and accepted about autism, prevalence and causation. We're not amused or fooled by the clowns the CDC brought in for this most recent prevalence meeting.

For the most part, the mental health and developmental professionals are brought in late in the game. You're mistakenly focused only on the behavioral symptoms and trying to reconcile neurology and development through nuture and genetics all the while ignorant of how immunological dysfunction impacts the neurology and ultimately the behavioral symptoms of an environmental disease process labeled autism.

You might want to step outside your box and familiarize yourself with what we have learned by reading Dan Olmsted's and Mark Blaxill's book the "Age of Autism" that takes a historical look at how autism was misidentified as a psychiatric condition and supported with strong evidence that it is indeed a man-made disease, the result of an environmental poisoning.

Dr. Germaine - Sorry pal, blaming unloving mothers isn’t going to cut it around here. Do you have any empirical evidence for your rehash of Bettelheim’s conjecture?

When we need amphetamines for our children, we’ll look you up. In the meantime, 1961 called, it wants its theory back.

Dr. Germine,

Autism may have a genetic component but genes alone cannot account for the pandemic numbers we see. Environmental insults must be considered as a likely contibutor and the one constant environmental component is vaccines.

There is a saying that has been floating around this community for years; "Genetics loads the gun, vaccines pull the trigger."

For modern medicine to ignore the opposing science and cover-up the role vaccines play in the rise of autism is unscientific, unethical, and criminal.

Bearman was just telling the world recently that autism has to do with having children spaced too closely together.

All of you elderly, highly-educated parents who live near freeways should stop having so many children.

Dr. Germine,

Thanks for weighing in. I'm curious as to why no medical evaluations are being done during the diagnostic process to assess if our kids have an underlying metabolic problem.

If, according to Dr. Shoffners study, 65% have mitochondrial dysfunction, wouldn't that indicate a need for metabolic screening? If anything it might help tease out the specific underyling medical problem and open the door to new treatments that could really benefit our kids perhaps even get them off the spectrum entirely. Some kids have lost their dx. I personally know of one. I hate to think that kids are put on the spectrum when what they really need is medical intervention.

Most developmental evaluation is done with through a psychiatric/behavioral lens shouldn't this approach be more comprehensive to include medical causes?

Aso, when you say autism is "primarily genetic", do you mean mitochondrial DNA? My son's DNA test (chromosomal microarray) came back normal.. we never looked at his mtDNA though.

If autism is all genetic, how is that 1 in 28 US born Somali children in Minneapolis, MN have severe autism yet it was rarely heard of/ described in Somalia? This to me seems more like a toxic environmental exposure on a sensitive population.

Thank you everyone. I do not deserve much credit I just listened to the meeting. Mark Blaxill was there representing all our families.

As hopeless as it may seem at times (and when someone started complaining about ASD diagnostic tools being biased about Native Americans believe me I felt a major hopeless pang) having a real parent voice at these CDC or NIH meetings is valuable.

Even though he was vastly outnumbered Mark really gave the other panelists a reality check. They were audibly surprised and disturbed by Mark's sentiments. His comments were made in a totally professional and polite manner and were easily the most impactful of the day. Remember most of these people never interact w/ children ours and are totally insulated from 90% of the ASD community. Believe me they will remember what Mark said. And we, in turn, will remember what they said!

Stagmom, I'm with you. Autism Speaks should stand up for the kids.

Thank you Katie! I didn't get a chance to watch this one. I'm almost glad I didn't now because I'm not sure my stomach could have handled such nausea.

When I wrote to the CDC I told them that they have argued for too many years over prevalence and our children are suffering for their ridicules time wasting ignorance. It's unnerving that this is still the major source of conversation. Where are all of the conversations on the multitudes of studies finding medical abnormalities and immune dysfunction in the kids? An epidemiologist is not going to tell you what's wrong with a child medically, nor how to treat them. I was 28 when I conceived my son, my husband 29, monies wasted on epidemiology and parental age does nothing to help my son, does nothing to help any of our children.

Ignorance seems to have been in full force that day. The 'unnamed' woman said the most discriminatory statement of the day. Followed by the 'know it all' Dr. MacMahon, who would rather all of the parents go away. What a disheartening meeting, with a complete lack of empathy. What may be the only way to make these people understand what's going on is to bring all our kids to a meeting. It's becoming obvious that they may only be visual learners.

no ones genes are normal...you, me and virtually everyone in the human population has defects in their genes .. some probably have more defects than others.

Our genetic defects are likely immune related hence we see a familial clustering of auto immune disease in families of children with autism. Defects in genes are nothing new but stressors triggering the expression of those defects is what's causing the autism increase.

Remove the triggers and the disease will lay dormant. There are those who want to remove the disease causing defects from the himan population altogether. There is modern day eugenics movement afoot and it's being applied to genetic defects that result in disease. This is why there is so much emphasis on genetics.

Association of family history of autoimmune diseases and autism spectrum disorders.

http://www.ncbi.nlm.nih.gov/pubmed/19581261

Familial clustering of autoimmune disorders and evaluation of medical risk factors in autism.

http://www.ncbi.nlm.nih.gov/pubmed/10385847

This treatment sounds like it would be beneficial for autism cases:

http://www.naturalnews.com/031260_probiotics_Crohns_disease.html

Katie-
We are so fortunate to have you participate and report on these important meetings... Your passion is palpable and this autism-mom is so grateful for what you do. It will make a difference. It has to.

Re: "Then things got even weirder. Some panelist, who forgot to announce her name before speaking, said that she was sure autism was more genetic than not because in her experience she has noticed “strange personality characteristics” throughout ASD families."...

This one cracks me up.

Once upon a time, I was an interesting, dynamic, fun person who was passionate about many things (who also pulled in a paycheck in a capacity that demanded a Masters degree).

So, my "genes" were normal.

Now, I am frazzled, stressed out, person who now has full blown ADHD accelerated by PTSD, who furthermore, is unable to work as I am a professional case-manager of my child and can barely handle the day... who is now only passionate about one topic (to the outside world) - autism. In our world - I'm passionate about many topics - environment, health, treatments (of all stripes), prevention, fundraising, privacy, local services, school issues, politics on the micro and macro level, etc., etc., etc. So, I think I'm still interesting - but not so to everyone outside of our world. So, I am clearly NOT fun to be around.

So now, my "genes" are not normal.

Do some of these people ever even consider UC Davis' research. Several California studies have the increase distributed almost equally between better diagnosis and true increase. How long will certain people act like those studies do not exist, burrying their heads in the sand while chanting the better diagnosis is all mantra.

It's amazing that Lyn, Katie and Mark aren't bald. What an absolutely frustrating way to spend a day. Thanks as always to all of you. Love also Media Scholar's flying monkey analogy.
Maurine

A lot of people are culling through information wondering exactly where are we in this sad mellow-drama?

Since the United State Supreme Court is about to release their decision, knowing something about the methods of the media-savvy CDC anti-litigation racket I'd say right here:

http://www.youtube.com/watch?v=SESI19h4wDo