Mother Talkers

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  • Autism (0 / 0)

    Well, I know I"m too close to this - having worked with kids with autism for over 30 years (starting in HS) - but here I go

    • not sure there's a real increase in autism.  There is definitely an increase in diagnosis and awareness.  For an interesting discussion of the impact of diagnosis on perceived prevalence, read Unstrange Minds by Richard Roy Grinker where he discusses how mental illness is defined, diagnosed, and how this varies with culture and country
    • the heartbreaking stories of celebs is interesting to raise awareness, but does little to change the lives of regular families.  Funding for a "cure" misses the day-to-day struggles of families currently facing autism.  If we figured out how to prevent autism TODAY, there would still be thousands of affected kids and adults
    • speaking of adults....where were they on Larry's show?  Their families have heartbreaking stories too.  Maybe not as cute as Jenny McCarthy's boy, but their story should be told too.  It's not told because it's not as tear-jerking, and also if there are adults with autism, it negates the scare tactic that there's an "epidemic of autism" (it's always been here) and the dream of a cure by the time they turn 6.

    Anyway, don't mean to be a downer, but I live this everyday and have definitely mixed feelings everytime a celeb or a talk show host "discovers" autism.  I feel for Jenny and  Holly and Doug and Toni....but no more or less than I feel for the dozens of families I meet each year.

    by Sue in Queens on Fri Feb 29, 2008 at 06:30:08 AM PDT

    • diet question (0 / 0)

      Sue, have you had any experience with Asperger's families trying a gluten/casein free diet?  I'm really curious about this -- not as a "cure" per se, but if it could help I'd be willing to try it. I'm also curious about how this all could also be related to Miles's eczema, because Eli is not Aspie and does not have eczema so the contrast is stark.

      Miles and His Favorites: The World As Seen By an Eight Year Old

      by Hillary on Fri Feb 29, 2008 at 07:22:47 AM PDT

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      • No experience of it.. (0 / 0)

        ..and I've heard mixed reviews, but there's a big CDC double blind, multi-year study that's due to report back some time this year that's been looking at it (how do you do a double blind study on diet, anyone?). I'm waiting to see the results of that. Placebo effect in autistic populations is huge (lots of wishful thinking), so any study that isn't double-blind isn't worth the paper it's printed on IMO.

        "You're never more alone than when you're alone in a crowd."

        by Expat Briton on Fri Feb 29, 2008 at 07:28:08 AM PDT

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      • Many families swear by it (0 / 0)

        It's actually much easier to do than you think - there are many options out there now, and most big supermarkets have things that are either dairy free or gluten free, or both.  There's alot of info on the internet.

        The other thing is it's easy to reverse - if it's not helping, you just stop.  One doctor I know recommends casein (dairy) free to every parent - little risk and if it works you know right away.

        by Sue in Queens on Fri Feb 29, 2008 at 01:24:13 PM PDT

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        • interesting (0 / 0)

          Interesting he starts with casein and not gluten.  I'm willing to give it a go, and Wegmans has tons of vegan and gluten free substitutes for baking, cereal, pasta, etc.

          The part that will be hard will be things like when they want a special treat like a donut, and, the dreaded ice cream....I promised my husband I would ask around and research and then we'd discuss it.

          Thanks for the info.

          Miles and His Favorites: The World As Seen By an Eight Year Old

          by Hillary on Fri Feb 29, 2008 at 04:17:24 PM PDT

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          • It's not as hard as it used to be (0 / 0)

            I tried dairy-free, gluten-free temporarily. It turned out I didn't need to, but in the end I rather enjoyed the fact that I was forced to try all kinds of new foods, some of which I still eat.

            Yeah, no ice cream. There are still plenty of wonderful yummy foods out there. Popsicles. Sorbets. I made a pumpkin pie, and I still use that  crust recipe. One of the finest, quickest, most child- and adult- friendly deserts you can make is a tofu-based chocolate pudding. You'd never know it's tofu. You can get Mori-Nu tofu and add their chocolate mix (mainly cocoa powder and sugar), or Alton Brown has a scratch recipe for it. I make it all the time. Open tofu, add to blender. Put in mix. Put in water. Press button to blend.

            The hardest thing is breads, but there are many options; it's just a matter of finding one that appeals.

            There are so many internet resources out there that I think you'll find it less difficult than you expect if you are already accustomed to cooking. (It would be much harder if you usually eat in restaurants.)

            by shenanigans on Fri Feb 29, 2008 at 09:46:49 PM PDT

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            • a friend of mine is editing a cookbook (0 / 0)

              on gluten free baking

              she's not the creator of the recipes- she is working for a chef at the culinary institute of america (cia) in hyde park

              one of her kids can't eat gluten, so when she was approached w/ the project she was very excited

              by thankgodforairamerica on Sat Mar 01, 2008 at 06:23:07 AM PDT

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    • Oh, thanks for saying it. (0 / 0)

      Saves me from doing so. And not just families of adults with autism, but also high-functioning and Asperger's adults. I mean, we can even [gasp!] talk for ourselves, and that really doesn't fit with the media narrative. Kind of glad I didn't see the show. Every time I hear someone suggest autism is caused by vaccines, I want to scream.

      "You're never more alone than when you're alone in a crowd."

      by Expat Briton on Fri Feb 29, 2008 at 07:24:48 AM PDT

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      • same here (0 / 0)

        Oy, it stops me dead in my tracks because it's like the health equivalent of hacking into the Diebold voting machines.  If you don't believe it, you've been duped by the man or something.  

        Miles and His Favorites: The World As Seen By an Eight Year Old

        by Hillary on Fri Feb 29, 2008 at 07:26:14 AM PDT

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      • Me too! (0 / 0)

        I have all these great counter-arguments and facts but I am reduced to stupefied sputtering when actually talking to someone who thinks that.

        by minnmom on Fri Feb 29, 2008 at 08:00:31 AM PDT

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      • timing coincidence and the human mind (0 / 0)

        is a funny thing. I think our fear of needles is part of it too.

        For example, the anecdote frequently goes something like "kid felt lousy after the vaccine and shortly thereafter I noticed problems."

        But:

        1. If kid felt lousy, he probably got some tylenol. No one jumps on tylenol as the 'obvious cause'.
        1. 18 months is a common vaccination time and a common first autism diagnosis. It's also a common age for the first fast-food french fry. Coincidence?

        by shenanigans on Fri Feb 29, 2008 at 09:02:47 AM PDT

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        • asdf (0 / 0)

          I demand congressional hearings investigating the link between french fries, tylenol and ALL childhood illnesses.

          by sangfroid on Fri Feb 29, 2008 at 12:10:38 PM PDT

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        • 3. television (0 / 0)

          1.  Most kids don't get exposed to much television before toddlerhood.  I don't think anyone's proposing that TV causes autism (which most researchers now believe is present by age 6 months), but there's a theory that TV stimulation may affect the attentional development of children who have autism.  

          There was this unusual but intriguing study not too long ago that looked at autism rates in rural areas with little TV reception (and thus have little access to children's programming).  The researcher showed a correlation between the arrival of cable service and autism rates - the longer it took for cable to reach an area, the later the autism rate began to climb.  The idea was that children watched more TV as children's programming became available.  There was plenty of criticism of this study but also agreement that he could be onto something - I don't know if anyone's done a followup yet.

          by lyn on Fri Feb 29, 2008 at 12:59:23 PM PDT

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          • I posted on this (0 / 0)

            I posted a quick diary on this when the study came out and several people thought it was a faulty study.

            Miles and His Favorites: The World As Seen By an Eight Year Old

            by Hillary on Fri Feb 29, 2008 at 01:03:07 PM PDT

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            • Actually the study was ok (0 / 0)

              It's the interpretation that was a disaster.  These guys came nowhere near showing that TV was a cause of autism.  They're not medically trained, and not epidemiologists, so they had no idea how to interpret their findings or where the pitfalls were.  They were so excited about the data they found that they jumped straight to overinterpretation.  The journal editors should never have permitted that.

              Statistically, though, I believe it was considered a pretty good study (though of a type that is inherently weak).  And while it doesn't show causation, correlation is nothing to sneeze at.  Nearly all causes start as correlations.  So I certainly hope someone with a better understanding of the issue is following up on the observation.

              by lyn on Fri Feb 29, 2008 at 02:07:42 PM PDT

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      • I'm feeling less inclined (0 / 0)

        to think that, though I still feel that vaccinating your kids is a personal decision for every family.  More research has come to light to show that there may not be the link to vaccines and autism that we thought existed.  

        So, by the time Madeline hits kindergarten, she'll be caught up except for varicella and the flu shot, as we are opting out of those.  I have a friend who has a child with PDD, and she is getting her child caught up too.  I think I would have gone a different route and done the shots on schedule if my child was in daycare, but since both my kids were home with me, we have done it on our own schedule.  On the upside, we won't need as many shots.  On the downside, waiting makes your kid hate the doctor's office LOL.  

        "If it's not Scottish, it's crap!" ~Mike Meyers

        by 1plain1peanut on Fri Feb 29, 2008 at 09:43:02 AM PDT

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    • good points Sue (0 / 0)

      A good friend of mine has been for 3 years writing about her family's journey with her first-born son who has autism and is now 21.  She has finished her book and it's due to hit bookstores in September I believe.  It's titled A Regular Guy Growing up with Autism; A Family's Journey of Love and Acceptance.  

      She has a website which I think I have mentioned to you before, but here it is.  Love to know what you think of it if you have time.

      http://www.laurashumaker.com

      karen

      by karen m on Fri Feb 29, 2008 at 07:54:45 AM PDT

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    • It's frustrating (0 / 0)

      There are so many possible factors that could be causing/contributing to autism, but so many people are fixated on vaccines that it just will not die.  No matter how much evidence you present, people come back with, "with my child I know it was the vaccine."  End of argument.  And really, why would you argue with a grieving parent?

      Many people are expecting more data on vaccines, but at this point I think the epidemiologic studies are more or less done (though data may still be coming in on long term projects).  I don't think there are any study designs left that would be larger or stronger than studying, say, the entire population of a country over a decade, in which many people decline vaccines and every child has excellent and well tracked health care.  (This one is Denmark, FYI.  There are many others, including a Japanese study of similar magnitude.)  Removing thymerasol from vaccines has done exactly nothing to the autism rate anywhere in the world.  

      by lyn on Fri Feb 29, 2008 at 08:54:37 AM PDT

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      • read (0 / 0)

        From what I've read, the Denmark study seemed to be the clincher on the whole debate.  And wasn't there some guy in England who started this whole debate and even he has rescinded his opinions?  

        And don't the symptoms of autism start to really show up around 18 months, or that's where typical children and children with autism start to diverge in behavior and development, which also happens to be when the final series of shots are given?

        No point in arguing with a grieving parent though, I agree with you on that.  

        by NJmom on Fri Feb 29, 2008 at 08:58:15 AM PDT

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        • sometimes it shows up really (0 / 0)

          starkly at 18 - 24 months, sometimes there are signs much earlier (e.g., posture, social interest).  But you can see how a parent would find that correlation suspicious, if they had their child vaccinated on schedule.

          by mamacita on Fri Feb 29, 2008 at 09:00:54 AM PDT

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      • You are so right (0 / 0)

        There's a great biblical quote about grieving people:

        "the words of one in despair belong to the wind." Job 8:2

        I feel for the parents, as one who has experienced great despair in my own parenting journey. But we can't let the 'words of people in despair' dictate the tone of public debate, or worse, set public policy.

        by sangfroid on Fri Feb 29, 2008 at 12:18:23 PM PDT

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        • The problem, though (0 / 0)

          is that 'cause' is a close cousin of 'blame'.  People desperately want to uncover any causes of autism we can control in the hopes of keeping our children safer.  Yet no one can bear the thought that their child's autism is in any way their fault.

          But what happens if we actually do discover that autism is caused by tylenol, or McDonald's french fries, or TV?  Or anything else that a child receives from a loving parent?  Parents will agonize over every fry they let their baby gnaw on, every episode of Sesame Street they turned on, every low fever they didn't leave alone.  Some parents would accept that they couldn't have known, but for others the knowledge that they were the one to expose their child would be devastating.

          And so some theories are more strongly resisted than others, because there is a strong need to believe that it must be something like vaccines, viruses, air pollution, or groundwater contamination.  A cause we can fight to improve without taking blame ourselves for the exposure.

          by lyn on Fri Feb 29, 2008 at 01:31:31 PM PDT

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      • Things like (0 / 0)

        this certainly don't help.  

        by TeachPeace on Fri Feb 29, 2008 at 08:20:22 PM PDT

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