There was a very interesting change at this IACC meeting from previous ones, and undercurrent almost. It may be due to the fact that this was the last meeting for this IACC session andany funding or rely on the next group of people. Regardless several interesting things were presented and talked about. Including the admission the vaccines can cause autism and the evidence presented on how "toxins" can trigger the immune system and result in autism.

Of most significant may be the fact that Tom Insel admitted that vaccines can cause autism. He did qualify it as being "rare", but rare could be as much as 3-4 percent. This admission, coupled with DeStefano also admitting the "possibility", says that the whole of the NIH has probably been told not to fight it anymore. Sound like they will just call it a rare possibility and move on,but that in itself is an amazing change since at all times in the past they would fervently deny that there was any connection whatsoever and not given inch and now they admit it happens. I would almost expect that future meetings of the next version of the IACC would go even a step further, especially if they extend the autoimmune research they presented.

The immunity presentations in the afternoon were really interesting. One whole talk was about a lot of research showing how toxins given to a pregnant mother, or young child, with an activated immune system can result in autism. This research ties in perfectly with the vaccine issue since vaccines do activate the immune system to create antibodies and also provide some of the toxins they hinted at. This was funded by an Autism Speaks trailblazer award, so I am not surprised that they only talk about "toxins "as a trigger and don't bother identifying any specific ones, but regardless it provides some amazing insights into what many parents of been saying for decades.

One of my largest hopes out of all of this is that further research into the medical causes of autism will actually start being funded the actual amount of funding for autism research is a joke at best but when you look at what's actually spent on the medical causation of autism and it is just a fraction of the total. It could easily be construed after the recent events that this lack of funding, especially into anything to do with autoimmunity and autism, could've been an underlying attempt to not discover some of these connections. This funding has been desperately needed for decades there is some amazing research that is been funded in dribs and drabs that is produced amazing results with the government just turns their head as if it was nothing. Several researchers I know have turned to European countries to actually do clinical trial showing amazing results with autism and windows results are presented in America you get a lackluster response from the governments particularly the NIH. So I hold out the hope that possibly funding into autoimmunity and the cause of autism wall suddenly start to be funded, But I am well aware that this funding will still be well below any of the other "sexy "childhood diseases and conditions.

I expect this slow change to swing more and more on our way as everyone realizes the truth is coming out no matter what, of course many will try to make this change excruciatingly slow so the change happens without making big waves.

If anyone has time to read a "book," do you think this would qualify as a case of "regressive" autism? I certainly think it is acquired (and I apologize for the length--and the fact that I've brought up much of this more than once already--but this is really hard for me to pull all together, and to be sure what is and isn't pertinent):

I can't for sure say if my daughter was normal from birth, but I can also say we had regressions. I didn't have the expertise to check for all reflexes, eye tracking, etc., in early ages, but my daughter seemed alert and aware of her surroundings. For some reason, maybe personality, only her sister got her really excited and most easily made her spontaneously smile. I swear she literally forced smiles for us, her parents, sometimes when we were interacting with her because she could tell we wanted a happy reaction which we were just not inspiring. She had a head size in the 90% percentile for her weight at birth. Somewhere along the way it measured off the scale. Was that a regression or normal development for her? (Her sister, smaller in weight and height, was delivered C section after turning around into breach position and an ultrasound showed her head development outpaced her torso size and they were concerned she might not be doing well. I was left wondering if that was a family trait or repeating sign of problem and vulnerability).

My younger daughter then had every vaccine including hepB on day one. She seemed healthy at least until around 6 months of age and was developing. At six months, she had at least one injection from a vial a nurse's aid had not been agitating in prior administrations. The pediatrician's out-of-the-room consultation with the aide, I'm guessing now, assured her that where she had been withdrawing the other doses didn't likely leave high amounts of the "preservative" and other stuff in the remaining doses. I was a little concerned at that visit because she was not sitting up fully on her own (I remember seeing my brothers and sisters learn to sit around 4 months old), but she was getting close and could support herself well enough to sit on the couch. The day after that well-baby visit I sat her on the couch and she immediately tipped and couldn't stop herself from flopping over on her side. Was that a regression?

One might make excuses like, she had a growth spurt maybe and her muscles needed time to catch up. In her baby book it was really hard for me to pin down the first day of anything after that. Sometime in her eighth to ninth month maybe she was officially sitting on her own. She was babbling and more irritable (a lot of teething?--my older daughter was cranky for a couple of months until a tooth broke through. Was all that crankiness actually due to teething I wonder now?), but mostly she seemed healthy. She never really crawled to get around. She scooted in sitting position, something that should have maybe concerned me. She could kind of crawl, but she hated being coaxed to do it, and I had seen one of my brothers prefer to get around that way, and he was a "unique" individual in some ways, and better off when not pressured to "normalize" I felt.

Then before her 8-9 month checkup she had had a fever for 2 or 3 days before, probably some tylenol, though for unknown reasons at the time, I didn't feel good about giving my second daughter tylenol for vaccines, etc., like I had been told I to do with my first, and I believe that was about the last time I gave it to her. She still had a slight fever when going in, but the pediatrician assured me over the phone that having been sick didn't mean she shouldn't get vaccinated, and they could check her fever while she was there. She still slightly had one(I guess I should feel lucky the pediatrician didn't feel the need to prescribe antibiotics, because I would have felt like I should do that too), and the next round of vaccines were given. My daughter had been babbling some by that time, and I was thinking about when she most verbalized and wanted to look for patterns/words in what she said. She said something pretty repetitive during her baths, and that night, with the injection bandage still on her leg, it occurred to me that something she said (a little more plaintively this time, like she didn't like the bath or the running water that night) was a lot like her name, and I got pretty excited and asked her a couple of times if she was saying "_________?!?" She looked up at me, and I swear I watched the lights seem to switch off and shrink and fade distantly in her eyes, disappear into her pupils (you know how many people talk about the light going out of their child's eyes... I think I watched something like that literally as it happened), and she looked down and didn't respond to me anymore, just sort of played in her bath. I was thinking "what was that?" Then a few weeks after it occurred to me that she hadn't been babbling spontaneously for a while, not since as far as I could remember that time in the tub. Was that a regression? Was the light receding in the eyes while I vaguely was aware of the bandage on her leg, a vaccine reaction and injury in progress?

I worked more with her for interaction and slowly her language was developing, I was realizing, with just vowels with a couple of consonants, sort of. She would copy my sentences or prompts with just all vowels, trying to match my intonation (I now know she has perfect pitch, something as a somewhat aspiring musician, I was bummed-out to learn existed and yet inconceivable to me). Pitch was important to her anyway. She could make the D sound, but that's what she used for "B." When she told someone goodbye, it sounded like "dye." But "Daddy" was "ah ee." So I knew she could tell or was instinctively trying to vocalize the difference.

Before I get into the "terrible twos" which came early, I should note that on some weekend I didn't record, she had a pinprick, red-dot rash, on her feet which otherwise appeared unusually pale. This moved up her legs and a little onto her torso for about a day. She had no fever and didn't seem uncomfortable. I debated taking her in for a check up but didn't as the rash began to fade. I'm only pretty certain this rash came about four weeks after some vaccination, possibly her 8/9 month vaccinations or MMR&Varicella at 12 months, because I remember checking a vaccine info sheet I had filed to see when a reaction might occur and this was about a couple days in from the end point of the reaction window.

I wish I had recorded that and also somehow recorded when her "terrible twos" began or progressed around age one. In our case (I saw this in my family in some degree really at all ages, so wasn't convinced it was a life shattering symptom, though extremely inconvenient) that meant hating to be undressed or touched by cold, screaming and fighting during diaper changes, especially if the shoes came off, not happy through the entire morning routine until the shoes were on. Hating to get in the stroller, happy once outside. Hating to get home, having to get out of the stroller, etc. Hating the car seat, period. She hated my trying to play the piano (except when she loved it). Somewhere in there she would sometimes shake or hit her hands like she didn't like how they felt and she pulled on her ears irritably. I'm tempted to pin this down as starting after her 12 month MMR + Varicella, because at her 15 month checkup right before we moved and left her first pediatrician behind, she screamed through every part of the "well baby" visit and the pediatrician once asked me what was wrong with her (me, a little frustrated--"She's just like this."), before leaving the room and sending in the aide with her combined DTaP-Hib shot (was that experimental in 1998?), and when I told her we were moving, over the screaming, her pediatrician almost seemed relieved, and I later sent her a thank you note for my children's care, because I couldn't say anything of the sort I had planned to while at the checkup.

With the possibly experimental 15 month shot in mind, at two months her pediatrician announced while several shots were going in that "they were also now giving the flu shot" like they were adding something new. I thought she meant for influenza, but that didn't go into the shot records I had, maybe because there wasn't a spot to record influenza, or maybe she possibly meant hib, eight years or so after it went on the schedule? This was in 1997 well before influenza vaccine went officially on the schedule, but four years later her second pediatrician was poised to give a flu shot with her Kindergarten boosters around 2001, also well before the official recommendation (and in March), so I think some pediatricians were routinely adding influenza shots in the schedule very early on, and I don't know how much thimerosal my daughter officially was dosed with at two months, for instance.

Somewhere over time, I think around the move, my blue-eyed baby developed brown eyes, just in case that is noteworthy.

Moving to 18 months, the only shot recorded on her infant records by her new pediatrician was for polio. I guess she had had everything else already on the schedule? And she had a break for a couple of years from vaccinations and made slow progress. I have to note that for the next check-up ('m pretty sure this was at two years), which incidentally was to involve no vaccines, or blood draws, my then toddler daughter recognized the building, got upset and started trying adamantly to push me back to the car. This rather tugged on heart then, but hurts to remember more now. I really wonder how much adversity she linked to that place.

Around 18 months, my daughter loved running through our larger apartment(s). She had only a little communication. No meant both yes or no or something like "do what I want." You had to tell by the tone. She didn't stim really, but her hands would shake when she was excited about something. I watched her get close and stare at some people's ears occasionally with that excitement. I remember a moment of seeing her tremble but otherwise seemingly frozen in her seat while some exciting (Broadway "Cats" climatic type) music was playing. I'm not sure this was a positive or negative experience for her. I'm not even sure it wasn't a seizure of sorts. She had repetitive play, like all the Christmas tree ornaments got to have a turn playing our "side-to-side, forward, back, up, down" game we would play with her when small. She didn't always know what I wanted. She guessed quickly as she could and ran to do sometimes what I last showed her to do, until with enough demonstration she connected what I said (if I didn't vary words much) to what it meant. For a while she had a problem with stepping out the door, if she didn't get her feet going in the right order. She kept backing up and shuffling her feet until something was right and forward we would go.

Her progress: She was distinguishing yes and no and saying a few more words, some in combination. Toilet training was working for #1 only, and only if she was not wearing a diaper or pull-ups (there was a dilemma). By four years, #2 started to go in more successfully. Going through the door and other transitions seemed a little more uneventful. She still had trouble with new situations and didn't have a lot of interest in the usual "exciting" events like trick-or-treating and Christmas until about age 4, but seemed generally pretty happy. I was getting hopeful that in some measure Kindergarten would work when she reached age 5.

But her pediatrician wanted to get her Kindergarten boosters in at her 4 year visit and I only briefly got in that we might wait on school, and I didn't want to have to do them again, and she assured me she knew what she was doing. I'm not sure she really understood what I was saying about where she was developmentally and I still wasn't wanting to burden my daughter with huge efforts to "normalize" her uniqueness, etc. I went against my feelings. She got all her shots, and almost a flu shot (I plucked up courage and refused it as the shot was in hand).

Then there was a regression, but not the fever, screaming, rush to the hospital, or anything like that regression. She was crankier than usual for a few days. Then about 10 days after, she reverted to answering irritably with just no, sentences and word combinations were gone. She started having trouble again ordering her feet for stepping through a doorway. Toilet training for #1 briefly failed, #2 which was almost reliably there, stopped and required another year plus. She couldn't feel or control it, one or the other. She added symptoms of stimming with her hands I had never seen before, and she needed to do this a lot. Symptoms of precocious puberty in a four year old: I was thinking, "What is this?!?" This happened over the course of a couple of months.

Then in Kindergarten, she would talk about bumping her head when playing in the Kindergarten play hut, though I now think she didn't actually bump her head, but something was going on she was trying to communicate and she still uses that phrase sometimes about how her head feels. She was mostly excited by stop signs and ceiling fans and announced each one she saw. There were bad days, and very bad days, and a few good days that had me seeing, as sometimes she was more connected and lucid, her symptoms were not just hard-wired or static. Over the longer timeframe, some problematic phobias kicked in and sometimes left.

More regressions/problems? One notably came after some dental work that involved nitrous oxide and amalgam placements. All the math she had memorized for a month or longer was gone, and foggy irritability took place instead for several days after, not that she didn't have generally foggy days anyway. We started over with the math, and I was getting used to starting over, and didn't reflect much about a connection with the dental care, though I did a little. She seemed to have a urinary tract infection at one point, clearly was in pain when urinating, but she tested negative for bacterial and then negative for viral. I wonder now if the test results might have been impacted in accuracy with whatever else she might had going on, and I was giving her tons of fluids, cranberry juice, etc., and she seemed to get better pretty quickly. She once fainted when exposed to cleaning fumes and we got her into fresh air, and she did better, but she had dark circles under her eyes and spent more time on the couch for days after that. I had to accept that physically something unhealthy was going on.

She had one more vaccine at age seven, the first Hep A, vaccine. She didn't even react in pain when it went it, even seemed a little excited or was maybe having a rush over it from the look in her eyes, or maybe she was determined to handle it. I'm not sure. I don't know if that vaccine had any adverse effect, but I decided a few days later not to go back for the booster in six months and not to let my older daughter get it. Not because I had let myself analyze vaccination timing with my younger daughter's health and regressions, but I was just getting to the point where the pediatrician-vaccine push was feeling unacceptably experimental and without bounds.

I didn't really start getting a clue until she was eight, and I was seriously wanting to understand better what was going on with her health. I just happened to see a link to RFK's Joe Scarborough interview that focused on thimerosal. That was a kick in the gut because it felt like it fit horribly well (not just with her, but with issues in many children her age that had me wondering what was happening in general), and I starting reading a lot about vaccine issues and biomedical interventions that seemed to make a difference for some. I saw big improvement in her focus and energy levels after taking a lot out of her environment, particularly when I started GFCFSF, etc dietary changes. Most of this narrative is founded on memory of looking back at that point trying to put together observations of her development and the timing of her vaccinations, etc., so I'm not perfectly happy with my record here, but it's only likely get more confused if not written down at some point.

Dadvocate

They are mostly just getting rich out of other's adversity. Another face study, another gene study: it is just circular junk.

Some years ago I used to read of "acquired autism". When did it change to "regressive autism"? I believe this has had the effect of 'hiding' previous reports and manufacturers' information. Now, how do I go about proving my suspicions when, effectively, history has been rewritten via Google?

Benedetta, Barbara, we are seeing more childhood schizophrenia in the schools.

I think regressive autism is more common than 40%. It's just very difficult to recognize in premature babies and babies affected badly by things like the old Hep B shot with thimerosal or even today's Hep B shot given at birth. Mothers sometimes worry about delays in these babies from the beginning, and sometimes these babies have mini-regressions with each well baby visit that aren't noticed. If the mom has documented every moment of a child's life like some first time mothers do these days on the internet, a faraway reader can pick out the regressions that occurred after shots, especially those early shots and the follow-up Hep B shots. Although this may not look like regressive autism, it is not "born with it" either. If you add these kids to the regressive autism category, it's a lot more than 40%.

I have not yet watched Dr. Pardos presentation but isn't he the same researcher who found neuroinflammation in the brains of children with autism? by not advocating treatment is he really suggesting that we just let them suffer becuase it is too difficult to treat? If any other organ in the body were inflammed would we not treat it? Neuroinflammation in the brain must be so painful. No wonder some kids are self injurious and head bang especially since they cannot communicate that their head hurts.

One researcher who has provided great insight into brain dysfunction is Dr. Mario Capecchi who studies OCD in mice. He determined that dysfunctional microglia causes OCD behavior. His team was able to cure the OCD in mice via a bone marrow transplant. His work is amazing.

Watch an interview with Dr. Capecchi: "Utah scientist makes breakthrough in mental illness research"- KSL TV

http://www.ksl.com/?sid=10947928

I will have another post on yesterday's IACC soon! Sorry for delay!

Lyn Redwood was magnificent yesterday. It is so difficult to be the only person with her expertise/ experience out of the 25 people in the room.

I want to saw John Elder Robison did a very nice job of speaking out for treatment re urgent pain. Twice I saw impatience on his face as speakers droned on about "exciting directions of the future," as they gave no specifics on what that may be nor anything about actually helping people.

Appalled by Dr. Carlos Pardo's horrendous presentation on why there is no difference between regressive and non regressive autism. He ignored the pain of the chronically ill population and advocated for doing absolutely nothing re treatment. Also he is a professional PANDAS denier. Couldn't IACC decent a real immunologist who knows what is really happening among the chronically sick population?

John Elder Robison - if you support medical treatment/therapies for those with autism who need it, please join us in advocating for it. The message is getting lost and it would be great if someone with autism would speak out. We need the medical community to hear this loud and clear because it seems that neurodiverse community often bristles at discussion of treatment and "cures". Causation aside, most of us just want our kids to function better, not be in pain and if possible be independent - wouldn't that be great.

So, what was the reaction to Lyn Redwoods pointing out about changed data???????

I definitely appreciate Mr. Robison's viewpoint on scientific and medical research and applaud his many statements over the years supporting research though, sadly, his voice is too often drowned out by the strident anti-science agenda of some leaders in the neurodiversity movement.

But I think it's a big mistake for any of us to get hung up on the stated purpose that ASD researchers (or our community) tag on this or that study. "Causation" research will undoubtedly develop knowledge that leads to better therapies and interventions along the entire lifespan for people with ASD (and probably other conditions.) Therapeutic investigations will likely offer clues to academic researchers looking at "causes", predispositions, or triggers. Trying to overly target science is a mistake.
I think our job as a community is to set the best conditions possible for discovery, not make bets.

Therefore, we should a) fund a ton of research along as wide a front as imaginable and b) make sure the folks we fund, whether with public or private dollars, are held to high standards of accountability and are encouraged and incented to interact with one another and with researchers in related neuroscience (and other) fields.

Finally, subgroups, including the regressive type, are far from a new concept. Robinson, Chez and many other leading clinicians with large practices have written and discussed subgroups and regression for many, many years. Heck, subgroups were the THEME of a recent IMFAR conference.

Personally, I think it's time to chuck the "If you've met one person" stuff and instead move to "Some types of" autism or use "Autisms".

John Elder Robinson:

If you don't think there is really an increase then there is no reason to find the cause. But what if you are wrong.

1 out of 4 college students has a mental illness.

In my community - my school mates - the salt of the earth -- not whores, or low lives out to steal -- but hard workers, church goers - beleivers in a higher power and try to do right and be kind to all -- have lost thier children in droves to drug abuse -- only I am sure it is really mental illness they have lost them too. I have watched some of them grow up before turning to drugs and there was already mood disorders going on.

Best to stop the bleeding and then try to stitch up a wound.

In other words stop more children from having brain injuries (not just different with wiring) and then help those that are damaged.

Actually we need to do both at the same time right now. You do not know how bad it is out here.

You are thinking low life druggies - think mentally ill mood disorders and they are coming from the same place as those with autism ..

I attended the meeting yesterday, and read my 2-minute public comment. As I have many times in the past, I pointed out that autism has many causes. All causes must disrupt function in a particular brain circuit, a "final common pathway" in the brain. This is different from heart disorders or fever.

Language disorder is the most serious affliction of autistic children. Seizure disorders are just as serious, and can be related to the same "final common pathway" in the brain, which I have often tried to point out may be the brainstem auditory pathway. Auditory system relay nuclei have higher blood flow and aerobic metabolism than any other area of use brain. Maybe I could make this more understandable if I had more than 2 minutes, or even better, opportunity for back and forth discussion. Public comments are now posted on the IACC website, both oral and written. I hope people can take time to read them.

Both language disability and seizure activity result from disrupted maturation of the cerebral cortex, especially the language areas. Brain injury to the auditory system likely also includes nuclei of the autonomic nervous system, which control heart beat, breathing, and intestinal peristalsis. Lyn Redwood was outstanding yesterday in trying to get some discussion of the autonomic nervous system started. She and I had a brief discussion about this, and that the autonomic nuclei may be too small to show up by methods used to measure blood flow and metabolism.

Dr. Kohane did speak with me briefly. I will try to get together with him. I spend a lot of time in the Countway Medical Library, of which he is the director. I have more to say, especially about the intrusion of “neurodiversity” proponents, and I said a few things in the written comments I submitted for this workshop. Right now I am on the Acela train heading home to Boston. My husband bought me the ticket, and this is much nicer than taking the bus...

You have misunderstood my comments on causation. This is the idea that I was expressing:

For those of us who live with being autistic, the pressing issue is not how we became autistic, but what we are going to do about it. Some of us need help developing basic independent living skills. Some of us need help with more subtle social skills. Some of us have serious medical problems. Some of us really suffer from depression, anxiety, sleep disorders, and other co-occurring challenges.

For us, the pressing issue is the development and deployment of services and therapies now.

That does not mean causation is unimportant - we should care about that, for future generations. But those of us who live with autism today - in all its forms - want useful help now.

I've always supported causation research, but as a part of an overall strategy, not as an exclusive focus.