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Katie Wright: IACC and Regressive Autism

Lost boyNote: Yesterday was an IACC meeting. If you listened or participated, please give us your thoughts in the comments. Below is a post from Katie Wright on the previous meeting held on July 8. We'll have a summary of yesterday's meeting soon. Thanks.

By Katie Wright

For so long, parents like myself have been frustrated by numerous and endless IACC meetings dedicated to the discussion of common genetic variants, Fragile X, de novo variants, the genome, early intervention….but today, finally, regression, a huge issue affecting 40% of those with autism, was center stage. Thank you to Susan Daniels and her team for arranging the terrific IACC meeting addressing autistic regression.

In 2014 autistic regression should be discussed as matter of fact and with urgency. This issue affects 40% of those with ASD! Yet still, sadly, autistic regression is often approached with timidity and fear. When Dr. Audrey Thrum started to speak about regression she immediately couched what she was about to say (which was extremely tame!) by describing regression as a “loaded topic.” What?  Is apraxia a “loaded topic?  Are sleep disorders a “loaded topic?” Is echolalia is “loaded topic?” No Dr. Thurm these are REAL issues, not “loaded” topics. For goodness sake Dr. Thrum, of you are going to research autistic regression stop being scared of what others think and represent these children.

And yes, yes, yes, Kanner, described regression 50 yrs ago…we get it, we get it… But these researchers never add that the Kanner children who regressed had parents working with dangerous, potentially neurotoxic chemicals. Important detail always omitted. But please, take it from a Mom of a regressive child who has obsessively researched regression (I am also talking to you John Elder Robison) for 11 years there has been a miniscule amount of solid research on this subject.

Since 2004 I have read hundreds book on autism that. I was up at night; for years- Christian was awake anyways so I read books on autism. I could barely find a child whose autism resembled that is my son’s in these volumes. Either the books doubted regression was real or if it indeed happened it was not serious, or regression did not actually occur but parents “missed the signs and “were looking for something to blame.” One of the reasons my parents started Autism Speaks was that, despite visiting some of the best hospitals and pediatric neurologists in the country, no doctor at Cleveland Clinic, Mass General, Kennedy Krieger, Columbia Presbyterian Hospitals had any idea why my son had a catastrophic regression. Few of the doctors we meet with even seemed familiar with severe autistic regression and none knew what to do about it.

So back to Dr. Thurm. Thurm prefaced her talk by stating she has a nephew with autism and cares about this topic. Ok, but how on earth could she be so apprehensive about talking about regression and not be more curious about why it is even happening?

Interestingly (and not surprising to most of you reading this) Thrum found most regressions happen at 12 months and 18 months. Hmmmm…..what happens to every American infant at 12 months and 18 months? Oh what oh what could it be?

Next we heard from Dr, Rebecca Landa from Kennedy Krieger. Dr. Landa expressed surprise that she had found that regression was both widespread and vastly heterogeneous in nature.

I get so frustrated when researchers say to me, “well Katie, we are working hard, but science is slow.” No people are slow. Science can be fast if one has the political will to get the right work done.


In 2004 Dr. Landa came to my house after my son had a severe regression. It was a disaster. Read here.


I was pleased, however, to hear Dr. Landa state that 6-month evaluations for autism are unreliable. Lately there has been all kind of silly talk about the soon to come magical ability to diagnose all kids for autism by 6 months. Then we can do ABA on 6 month olds and cure them of autism. This is such a naïve and harebrained idea.


Finally Landa cites new research that by age 3 there has been a massive loss of fine motor skills among the regressive ASD population. Yes, my son went from being the king of the playground, up and down ladders, slides, chasing other toddlers to being unable to climb steps or use slides and swings in any way. Instead of using playground equipment he just wanted to walk in circles.

 Too may of these professional early intervention researchers fail to realize that half of ASD kids who later develop autism are Not autistic at 6 months of age. It is like diagnosing someone with a broken leg 6 months before the person actually breaks his leg. All this misguided and expensive early detection work in infants misses half the ASD population. Researchers need to focus on the reality of autism, not the neat and tidy “it is all prenatal,” or detectable in infancy  world they want it to be.


Guess what else Dr. Landa found? There is a huge spike for regressions at 18 months. Hmmmm….there it is again. Remind me what happens at 18 month? Is there something, a medical procedure perhaps, that happens with all American 18 months olds?


Finally we heard from Dr. Cathy Lord. Dr. Lord, too seem shocked at how common she found regression to be among kids with ASD.

I went to below average suburban public school that literally shut down the day my class graduated. Most of the teachers were on the verge of retirement. To say that the classes were not stimulating would be kind. To be fair, I put in minimal effort studies and instead became adept at appearing as if I were listening to lectures while mentally checked out, thinking about “important” teenage like who could give me a ride home so I would not have to take the bus.

My fake listening skills became well honed.  I thought I was pretty good at it but I can see I am just amateur compared to the real masters of “checked out listening,” in the autism research community!

How many decades have parents been talking about their kids regressing into autism? We get a lot of nods and “I sees,” from doctors but years later there is shock and surprise that so much regression is actually occurring. Listen, my career in fake listening ended when I went to college. People working on urgent children’s health issues need to fully pay attention to their patients. I am speaking to the whole of the mainstream autism research community as well as IACC members. Why not show a real commitment to the issue of regressive autism by designating some meaningful research dollars to this subject. Display a sense of concern, urgency towards preventing and treating regressive autism.

You know that excitement most researchers display about Fragile X studies – try applying that to regressive autism! Come join us in reality – in the here and now! Rather than obsessing about rare chromosomal variants of autism, which rarely relate to more typical; autism, why not try studying a common version of autism, like regressive ASD, right now!

Dr. Cathy Lord re-iterated how awful regressive autism is but continually undercut her point by stating how rare severe regression is. If only! Dr. Lord showed a video of a toddler who regressed into autism. It was good footage but sister, I have film, as well do about 25% of my peers, which make that regression look small time. Just as these researchers were wrong for so long that regression was happening, they are wrong to minimize the prevalence of serious regressions in the ASD community.

OK, so in summary: Dr. Thurm, Dr. Landa and Dr. Lord all found autistic regression most prevalent around the 18 to 24-month period. Interesting timing, right?

Katie Wright is a Contributing Editor to Age of Autism.


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Slow as in Barbara Fisher's son was damaged in the 70s - so slow that it did not save my kids in the 80's -- and so very slow that a giant tidal wave of kids were hurt in the 90's and the first decade of the new century.

Can I show you picture on my face book of my new grand nephew on 4 months old playing with his poop bear as they are getting ready to give him as many vaccines as MIssissippi requires. He already has a three year old brother that can not speak.

Slow so that it will be how you say, change finally comes with out big waves.

So; Colleen goes on with her life - a big retirement feeling safe and secure money to do as she wishes untill the day she draws her last breath.

No justice. OH Eben - you are probably right.

Eben Plettner

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.


@John Elder Robison:

1) The most useful help we can give to adults with autism is the knowledge of the cause of their issues. If vaccines played a causal role in an individual's seizure disorder leading to brain damage, it's absolutely necessary to know this information. Not only should further vaccination of this individual be stopped to avoid further damage, but knowing the cause makes it possible to appropriately treat medical and neurological issues. Without knowing the cause, it's much more difficult to even identify some of these issues.

You can address issues far more effectively if you know how and why they developed in the first place.

2) I think it's a big mistake for you to assume that you can speak for all adults with autism, just as we can't assume we speak for you. The fact that you have autism might help you to more adequately represent others with autism--or it might fool you into thinking you can understand others with autism when you can't, because they may have completely different issues and needs than you do.

3) I very much appreciate that you are willing to try, but it's terribly upsetting to me to see that you fail to understand how causation can define the kind of help that would be deployed.

4) I also appreciate that you are here on this comment feed, explaining your position. Thank you for doing so. I hope you keep reaching out to us.

Jeannette Bishop

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.


Dadavocate here is Tom Insel on Ted.

Notice he said that all the medicine they have that efffects the brain and mood are in the short term -- good but for the long term -- horrible.

My daughter put off taking Latuda for about three months new brain drug -- scary stuff - for only the brave. She had finally got off of Prozac a few months earlier -- horrible -horrible two weeks. Horrible.

- As a parent I have held medicines in my hand and thought I am not brave enough to take this myself, and then give it to my kids.

Agnostic about the cause.

Believe me they keep coming at them with vaccines their entire life --if God grants you grand kids will you still be agnostic about the cause?

John Stone


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

Angus Files

Same old, same old, same old, mantra, research..

the cause of Autism? or a cure for cancer?

Definitely ..


Another Cassandra

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?


Thanks Barbara; I appreciate the help and the awareness. I am trying to get my friends and my community to become aware that there is a reason that we are losing young adults by the dozens -- A REASON! They need to stop blaming themselves, or blaming parents that they perceive as too indulgent of their kids, or blaming the doctors for giving them pain killers. IT is time to wonder what in the heck is going on -- really.

Katie Wright Thank you so much for going - I tried to watch them this year and found myself very upset with the unfairness, evil - really. I look forward to your report.

And the link John Stone sent;
It is still trying to decide if there really is an increase in autism - or they have just always been there among us. Oh, yes always been among us.

Quote: "The researchers say they would expect to see similarly high rates of autism emerge in the U.S. and elsewhere if the same data collection strategy were used. "The kids picked up in Korea, many had never been recognized in medical records as having autism," says Geraldine Dawson, chief science officer for Autism Speaks. "That's what needs to be done, that kind of broad screening "

Yeah, yeah right -- and where was the guy from that killed so many at Virginia Tech ? HE was from South Korea. Did his mother know he had problems -- Oh, darn yes. She was begging the people around him to help him. And --- because of him I found out that South Korean's attitude about mental health problems -- it was very shameful.

Shameful is something that is not all that often happening -- rare -- as in drug addiction use to be shameful, now it like -Oh, that is too bad -- are they getting any help?

Geeeee and autism is so high in South Korea -- always been?

I am making Kim chi this Fall. I watched tons of videos on how to do it.

It is a probiotic - like sauerkraut, but better - some recipes even have fermented fish in it and red pepper powder. One of the most healthiest foods in the world and it is a staple of South Korea.

An old South Korean man says in one of these videos that the young ones have lost their taste for this traditional food -- they don't like it if it gets too tangy (meaning more good bacteria).

It may be that S Korea never had mental illness before -after all - many of the brides of the the great kings of China came from Korea - as well as some very creative ideas. All- before western medicine brought in vaccines and western type diet turned so many away from kim chi and before Virgina Tech incident.


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

Birgit Calhoun

Mr. Robison!How about focusing on the why. You appear to be smart enough. It is vitally important to eliminate what is and is not relevant to prevention. Many autistic children will never be helped, but if the cause is found maybe future generations can benefit.

Betty Bona

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%.


John - I must strongly disagree with your premise. The statement..."We" have been funding "a ton of research" for decades with zero results...misses the mark. By a lot.

Autism focused scientific research in any meaningful scale has only just started. The first IMFAR took place in 2001 and was attended by only a handful of scientists. There are still only a couple/few thousand researchers in the mix...for the entire world!...but the numbers are growing, thanks to increased funding and awareness (mostly the funding part).

Autism was viewed for many years prior to 2001 and several years after, as a career dead end by academics and research scientists at leading institutions. Funding was a rounding error to zero. The little science being done was patchwork, limited in scale, and largely parent funded (there were only a few dedicated souls even publishing). That began to change around mid decade, when the CAA passed and research universities began to notice and look at autism as a possible field for institutional growth (beyond their psychology departments.) Commercial, mostly pharma. interest in the potential ASD market has increased too, which I find unsurprising, but it's nascent.

Fortunately ASD is now on the national research radar, but it's a very small "blip" relative to other signatures. Neuroscience overall is still far too small in the funding mix, as evidenced by the new, Federal BRAIN initiative. Much needs to be done in the years ahead.

You may also want to consider that new pharmacological therapies (a few already in use), developed with some funding from Autism Speaks and other sources, geared toward ameliorating or helping to manage some debilitating and dangerous aspects of ASD (like seizures, OCD, self injurious behavior, extreme aggression, and depression) may be extremely welcome to some in the autism community engaged in daily struggles with these challenges.

Anyway, the IACC forum could stand a ton of improvement and I'm appreciative that Katie and others are closely monitoring their activities. I'm agnostic on causation(s) and just want more, a lot more, research to take place. It is sorely needed.

autism mom

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


Benedetta, you are so right. I was reading Blaylock, he's saying ,as well , just when we think our kids are okay and off to college many will present their vaccine injury as schizophrenia. My sister's son,she raised him and his brother in a town noted as one of the best places in the US to raise children. I wonder if their vaccine compliance was factored in. While her husband was working on his PHD, her son was being arrested for weapons and drug violations. He's not yet 21, and has already spent time in rehabs and jail. Many in this wonderful town are experiencing the same, we have a lot more work to do. We need awareness of the total damaging effects. First they self medicate, then they are addicted, then they have to find a way to fund their addictions.

Katie Wright

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?

Caroline McIlhenney

I quote from my dog-eared copy Autism: Effective Biomedical Treatments by Messrs. Pangborn and Baker, dated 2005

For those who are concerned about the genetic or biochemical variants that make up the autism spectrum, two general classifications can be postulated:

Type I. This type is a severe metabolic disorder, almost certainly an inborn error of metabolism with genetic associations. These disorders feature autistic traits along with other abnormal traits that may be even more damaging than autism. There are at least two dozen of these conditions that have been reasonably well described in the literature. The ones I have looked into are listed later. [e.g.,cri-du-chat, Prader-Willi, Angelman Syndrome]

Type II autism. This is the newer type of autism that is primarily responsible for the near-exponential increase in its occurrence. This type involves genetic predispositions but is triggered by toxic and immunologic stressors. Like Type I, it has always been present to some degree, but now it has become prevalent because of the increased number and severity of acquired stressors. This is the kind of autism that DAN! researchers and clinicians are most concerned with.

Obviously, these two classifications could become arbitrary when metabolic disorders of genetic origin are nearly equal in severity to the effects of acquired insults. But individuals with identifiable metabolic disorders that are genetic and run in families do not make up the majority of autism cases; they are now a small minority. Our opinion is that the vast majority, something like 9 out of 10, or even 19 out of 20, would not have manifested autism had it not been for exposure to one or more of the seven bulleted stressors outlined previously. [They talked about thimerosal, increased vaccinations, esp. hepatitis B. pesticides, antimony, decreased quality of nutrition, decreased breast feeding, substance abuse.]

There were earlier editions of this book, too. I got it from Autism Research Institute. My main point is that regressive autism was known 10 years ago, at least. For those who went through it personally, it goes back further.

autism mom

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.

John Stone


"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."

"We" have been funding "a ton of research" for decades with zero results, and we have also had a lot of posturing about standards but I remain sick at heart when I see the garbage flowing through the IACC. I am particularly apprehensive about the Autism Speaks and its pharmaceutical consortium preying on our children with their new range of specially developed psychotropic drugs (not least so many of our children cannot tell you how they make them feel).

Insels comment yesterday were beyond inanity. Sorry.


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

Eileen Nicole Simon

I just noticed John Elder Robison’s comment here. Please read the written comments I submitted for this workshop, especially about the suffering my 52-year-old son has endured. He suffered head trauma and oxygen insufficiency at birth. It matters very much that this be recognized. People trying to tell us it doesn’t matter what caused his autism feed right into the stigmatizing ideas of genetic causation, and the ideas of “autism phenotype” and “broader autism phenotype” (BAP).

Euphemisms derived from the phenotype are what has led some people to believe they have autism. The idea that autism is a “social disorder” is wrong. The “social disorder” is in fact part of a general lack of environmental awareness, the most severe form of attention deficit.

Developmental language disorder and seizure disorder are evidence of brain damage, not neurological diversity. In my written comments for this workshop, I described how difficult it was for us to accept the idea of brain damage. Brain damage is permanent, and it is tragic.

We have been watching the PBS special on the Roosevelt family. Franklin Roosevelt resisted the idea that he could not recover from polio. No one could have been more persistent in trying to regain feeling and use of his leg muscles. Sadly, spinal cord injury like brain injury is irreversible. These are tragic permanent injuries. Please don’t try to usurp the term autism, and efforts to find the cause of the brain damage that leads to this lifelong condition. The help we need is lifelong assistance with housing and activities of daily living (ADLs). Things like college and meaningful employment are out of the question.


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".


I completely support you in bringing up the topic of regression. Please continue speaking out on this topic. My son also had a very dramatic regression after developing normally and being very verbally precocious and social. So his regression haunts me and makes it hard for me to accept that autism is just what he is. He also remembers speaking and wants to speak again more than anything.

I know what caused the regression but I want to know what can turn it back (we have tried 1000 biomed interventions but I have not yet stumbled on the right ones.) Research shows that the kids with regressive autism are the ones that fare the worst and respond the least to treatments. I think you are right when you say that science can be done really fast when there is a political will. It has been over 10 years since I was plunged into the autism world and I have seen very little real research done during that time. There has been nothing to help my son and I don't get excited when I hear the newest study about how much early intervention does. We started therapy a couple of months after my son regressed and I saw nothing from it.

I agree that it should be called "autisms". I wish that they had kept Aspergers in the DSM because at least it created 2 subgroups. Really though they should be sub grouping kids based on medical test results rather than just observation of behavior.


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 ..


Guys what was the reaction to Lyn Redwood's talk on the changed data at the CDC??

If not verbally at least by body language. That is a language too - you know. -- any eyes going wide, heads dropping down, shifty eyes - shiftying around in their chairs. Anything???

Eileen Nicole Simon

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...

autism mom

I hope John Elder Robison reads this piece because what he needs to understand that if he is to represent the autism community on the IACC he should represent all POVs not just his own. The thing is we all want acceptance but we also need medical help for our kids. Acceptance and medical treatment are not mutually exclusive.

Robison needs to understand that we are dealing with autism(s)- plural. Some cases are soley the results genetics like Fragile X and Rett Syndrome but majority of cases are triggered by environmental exposures on a sensitive subset of kids who have a poor ability to detox. Most of our kids fall into the latter catagory.

These are the kids with regressive autism like Katie's son and my son. Like so many other paretns have reported, I watched my son develop normally. He met all his milestones the first year and into his second year. After he recieved his MMR and flu shot (the straw that broke the camels back) he began a downward spiral that at age 10 he still has not fully recovered from. As one mitochondrial specialist said after the Hannah Poling decision, "some kids are walking a knifes edge" with regard to their mitochondria and too much stress can push this subset kids over the edge into mitochondrial dysfunction.

I don't know if any mito specialist were at the IACC meeting but it would be great if a whole IACC meeting could be dedicated to underlying mito dysfunction in kids with regressive autism. The Mito Action web site has a lot of excellent resources on the link between mito and autism and could probably recommend speakers to the IACC.

John Elder Robison

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.

Vicki Hill

Yesterday's event was a workshop specifically focused on co-morbidities with autism. Dr. Kohane of Harvard gave the analogy of dropsy - a very old term that referred to heart problems. At one time, no one knew what caused heart failure, so they lumped everyone with symptoms into this one word. But over time, doctors learned that there are multiple, very different causes of heart failure. And as they learned the causes, they could treat the various types of heart failure.

Then he talked about "the autisms" - yes, plural. He presented data showing several distinct subsets, which clinicians and researchers could classify based on co-morbidities. For example, while 20% of people with autism have epilepsy, research identified a subgroup where 80% had epilepsy! If researchers would pay attention to the subgroups, they might find correlations that are completely overlooked when 'autism' as a whole is studied. And...he pointed out that parents have been telling researchers this for years.

I wanted to shout, "Yes! Yes!" But just a couple of hours later, I was shaking my head. John Elder Robison was saying that he didn't understand the focus on causation, that he had never met an adult with autism who cared about its cause; they just wanted help. Hello? He did not understand the dropsy analogy at all. Doctors could treat heart disease once they understood its different variations; understanding cause is critical.

At least Dr. Insel seemed to get it. He later used the fever analogy I've used many times. Knowing someone has a fever isn't enough; you need to know whether you are treating Ebola or strep. Bottom line: I heard a little progress - some of the folks are starting to comprehend.

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