Sunday, January 16, 2011

Two Years of Autism Jabberwocky

Two years ago today I started Autism Jabberwocky with my first post "Correlation, Causation, and non-sense".  I don't think more than a handful of people have ever that post but I still think what I said then is as relevant today as it was then.

People still misunderstand and misuse correlation all of the time.  I think the Wikipedia article on the subject still gives one of the better summaries on the subject -
Correlation does not imply causation" is a phrase used in science and statistics to emphasize that correlation between two variables does not automatically imply that one causes the other (though correlation is necessary for linear causation, and can indicate possible causes or areas for further investigation... in other words, correlation can be a hint).
I still run across people who ignore that definition and twist it to suit their own needs.

If they disagree with a controversial treatment, such as the GFCF diet, and you say that the treatment has helped your children, they might use the "correlation does not imply causation" line to say that the diet couldn't have caused the changes.  Or on the flip side, you have people who think that autism is genetic and take the smallest correlation or appearance of increased risk and immediately jump to the fact that just having a rare genetic condition can cause autism.

Its funny really, even people who claim to base their opinions on science fall into the trap of favoring lines of thought that agree with their opinions and discount those that don't.  I, of course, never have that problem and am perfectly rational at all times.....

In my first post I also briefly mentioned a part of my twin daughters history that I don't think I have ever really explained.  You see,  my older twin daughters experienced a regression at about one year old.

Before the regression, the twins were progressing normally for being twins, which means they were meeting most of their milestones but were slower to start using words (its a twin thing).  They also had some decent social skills going and we had actually seen them team up to do something a few times.

But, about a month before their first birthday, we went in for a normal doctors visit and they received their second flu shot.  Less than a day later, they both spiked a fever and developed what we thought was a cold.  We still don't know what exactly they had but, whatever it was, it was something nasty and they couldn't seem to shake it.  They spent the next six to eight weeks or so trying to fight off whatever it was and were just miserable little lumps the entire time.  They went from being happy little girls to just sitting and staring.

About two weeks into the cold they both came down with what was most likely rotavirus and we experienced  diarrhea like we never had before.  And even though the worst of it passed after a week or two, the twins never stopped having issues with loose stools until we put then on the GFCF diet over a year later.

About four weeks into the cold they both developed ear infections and were put on antibiotics.  A trip to the emergency room, some perforated eardrums, and a week later they seemed to be coming out of whatever it was and we took them in for a regular doctors visit which is when they received the MMRV shot.  The same day as the appointment the mystery illness came back and, over the next several days, they also developed a strange rash that resembled chicken pox on their stomachs.  They spent the next two weeks being even more miserable than before.

When they finally managed to kick whatever it was and started feeling better, they were subtly different.  They were not as engaging as they were before and the early vocalizations we had heard disappeared.  More importantly, they stopped responding to sound the same way. It took up a while to pick up on what was going on, but for several months we thought that they might be deaf.

As a matter of fact, after they failed two hearing tests, there were several audiologists who also thought that they might be deaf.  It took a procedure known as an auditory brainstem response (ABR) to establish the fact that they were still physically able to hear.  I suspect that this abnormal processing of sound is a large part of the reason that their ability to understand speech and to talk is still very limited to this day.

Now, let me be clear, I don't think that this illness or the vaccines "caused" their autism - I believe that they would have still developed autism like their younger sister did.  But I do believe that this illness made their autism worse than it would have been otherwise.

Since this time we have learned a few little facts.  Like the fact that a flu shot hasn't been shown to be effective in children under the age of two.  Like the fact that thimerosal - which was in the flu shots - probably isn't the best thing to give to very young children.  Or like the fact that you really shouldn't give any vaccine to a child who is sick and on antibiotics.

I have also learned more about how the body works and how seemingly unrelated systems can interact.  Such as how problems with energy metabolism can be made worse by an abnormal immune system reaction.  Did I ever mention that the twins have documented problems with immune disregulation and suspected problems with processing creatine?

Do you know what can happen to a one year old who, under the best conditions, have problems with an overactive immune system and processing energy, add in the extra stress of rotovirus, a nasty cold/flu, and an ear inflection, and then further stress them out by injecting weakened forms of four major childhood illnesses at once with an adjuvant designed to kick the immune system into high gear?  For good measure add an undiagnosed food intolerance to milk, deficiencies in basic nutrients such a iron and zinc (most likely caused by the food intolerance), and the GI problems caused by an oral antibiotic and you might just get the perfect storm.

Its no wonder that they looked miserable.

I don't know if we could have down anything differently with the twins.  Perhaps if we had, they might be more like their youngest sister.  Baby C never had a period of illness like this and never had any sort of regression.  She still gets her vaccines but we slowed them down and spaced them out more.  She never gets them when she is sick and we never give her more than two at once

So now, five years after the twins regressed, we are still trying to figure out what happened and what we can do to help all three girls.  I know that science has exonerated vaccines from having anything to do with autism but, and this is the important part, science deals with overall trend and large groups of people.  Large studies are good at detecting overall trends but can't necessarily tell you what happened with an individual child.

So even though I know, understand, and accept the fact that - for the majority of children - vaccines are perfectly safe and that I know that my children would still have autism without the vaccines, I still have my doubts.  Maybe there are other children out there who, like my twins, simply couldn't tolerate what they were given at the exact moment it was given.

Who knows, maybe I am completely wrong about this entire sequence of events and the regression would have happened regardless of what we did.  But that is unknowable and all I can go on is what seems to be the sequence of events.  All I know is that the two separate children reacted the same way to the same events at the same time and there appears to be a correlation in spite of all of the science saying that there should be none.

But, as I said at the start, correlation isn't causation.


  1. A very moving post.

    Autism is simply a statement about behaviour. These days it's tied to neurodevelopmental problems but...

    If a child can have developmental problems with their brains, then surely they may have other developmental issues relating to other organs as well?

    I don't know, I'm sure your better informed than me.

    Also it is not rare for children to have problems with gluten or casein - obviously just random chance alone will mean some kids will get a double hit.

    That's without even considering they may have gut developmental issues.

    I have never once thought that any of my problems might be vaccine related, but my mother, without any knowledge of autism or the debates around it, mentioned that I had such severe reactions to my childhood vaccinations that I ended up only having the most important ones.

  2. My son also seemed to stall then regress after age 1. I can't pinpoint a specific shot but I can say that a while back I convinced myself that shots had nothing to do with it and I let his school guilt me into giving him his 5 yr vaccines (minus MMR since his titers were fine). He went through a major regression after that this fall which included major behavioral issues and wetting the bed. They might not be connected but since he had food allergies as a baby and the most sensitive skin I have ever seen, I suspect his system can't handle things the same way mine can.

  3. You sum up why I think it is so hard to explain all the factors leading to autism. Folks want to point to one thing and I suspect it's more like a death of a thousand cuts. Your post brings back alot of memories with our experience, it was very similar. Our child made the same type of regression with illness/antibiotics/diahrea at 18 mos. He had gi issues at one week of age, but was always ahead on his milestones until the regression. I have Celiacs and Crohn's (undiagnosed until trying the diet for him) so I'm sure he started off with at least one of those. Bakers Yeast antibodies are an IgG antibody found in Crohn's, Type I diabetics and Celiac families and has been suspected to trigger the autoimmune response in susceptable individiuals. Bakers Yeast is also in the Heb B shots given at birth, 2 mos and 6 mos. While many point to the MMR, the addition of Heb B to the vaccine schedule is when autism rates really began to soar. At the same time, I think there are so many other things that complicate the issue, like you said, the undiagnosed food alleregies, the antibiotics, etc. I really think the vaccines aren't the whole story.
    Happy Birthday to your blog. I have really enjoyed reading it. I wish your family the best.

  4. A good and important post.

    From all of my own research and reading, the only remaining concern I particularly have about vaccinating my kids, is if they are already ill at the time or have compromised immune systems in general. Your story reinforces that view.

    I suppose I am lucky (in a sad and ironic way), that my autistic son showed clear developmental delay and signs of autism, from birth. So I never had any strong reason to think MMR - or any other vaccine - caused his condition. As for making his condition worse, I don't think so, but again - like you so rightly and importantly point out - it's about looking at the individual child to really understand what's going on.

  5. MJ: A belated congratulations on two years of autism jabberwocky, you have a great blog! Keep up the good work!

  6. Interesting post. If I may, why do you believe the older twins would have acquired Autism regardless of the triggers you noted?

  7. Hi Schwartz,

    That's a good question but I'm not sure that I have a good answer. The main reason that comes to mind is that that my younger daughter also has a diagnosis of autism.

    The simple fact that we have three daughters with autism strongly suggests that there is some genetic or other biological factor at work. The odds of having multiple female children with autism simply aren't that good. But then again, the odds of having identical twins aren't that good either, so this isn't a strong reason.

    A better reason is how my younger daughter developed - she didn't regress into autism, she just slowly fell behind where she should be. She developed normally for the almost two years before there were any obvious symptoms of her autism. As a matter of fact, we actually had her evaluated at 18 months and, even considering her sister's history, she wasn't far enough behind where she should be to get any sort of diagnosis.

    Her diagnosis didn't happen until she was almost two and half and even then it wasn't clear. I don't think she would have gotten a diagnosis even then if we didn't have other children with autism. But the thought was that there was enough there and she could benefit from getting extra help. Time has proven that was the right choice - she now clearly has mild autism and has benefited from the earlier intervention.

    So overall, her disorder was slower to show up and she is on the milder side.

    And yet she has problems in the same core areas that her sister's do. Given the wide variety of problems you can see in children with autism, I think it is meaningful that autism "looks" very similar in all three. To me, this suggests that they share some underlying biological component.

    And then there is the fact that the youngest does have similar problems in her bloodwork. She has low zinc, high copper, lower iron, very low cholesterol, some signs of immune disregulation, and other indicators. Which is again the same as her sisters, just milder.

    So my hunch is that the older two would have looked more like their younger sister if they didn't regress.

    A second reason is that the twins might have had some small hints of autism before the regression happened. Our memory of their first year isn't that good anymore (twins will do that to you) so it is impossible to know for sure, but we think we remember some behaviors that could have been related to their autism. But then again, there were some behaviors that are remember that would have ruled out autism.

  8. Congratulatons and thank you for two years of excellent "autism" blogging.

    Harold Doherty

  9. for any particular child Correlation on one jab - co-incidence.
    After every single one - and with similar presentation - not so much.

    It reminds me of when I went off gluten - and my daughters behaviour began to improve- (Husband:she's growing up) I tried to get her tested for coeliac - hence eating lots of wheat. Close to uncontrollable mood swings (Husband:she's becoming a teenager) gluten free again, no problem (growing up again.)

    If she hadn't of undertaken her own double blind trial (stealing chocolates) I don't think he'd ever have admitted it.

    Now we as imperfect human beings can try to rationalise "co-incidences" we don't want to know about, but for a community who purport to be "Scientific" it's inexcusable not to test that hypothesis. (Even if in the case I showed you the "test" was a complete accident. ) BTW you might want to check out soy - it's a similar molecule to gluten and casein and I believe it's not uncommon to have the trifecta. certainly half coeliacs seem to (on a small scale study) have the casein gluten double :(

    Good luck with the new year. And best of health to your family.