5.19.2010

What Are You Thinking?

This one's for the autism parents:

To be clear: I opine in this space, at length, usually about autism topics. I have strong opinions, but as those opinions are rooted in experience combined with constant reading and research and conversations, I'd like you to listen to them. But I never expect you to do what I do and repeat what I say. What I hope is that you use the information I give you as a starting point for your own reading, and research, and conversations.

I expect you to think, and think hard. I expect you to acknowledge that neither you nor I have all the answers when it come to autism, and that it's okay to say so - as long as we all keep trying to inform ourselves, as long as we keep listening.

I expect you to question all provocative autism pronouncements -- mine included. Especially when it comes to vaccine-autism causation claims, whether about pig viruses, about destroying the vaccine program, or about the zero, not "thousands" of autism claims awarded by the National Vaccine Injury Compensation program. I expect you to question, examine, and dig as deeply as you can.

I expect you to be a skeptic. Otherwise, you're nothing but a believer. And while belief may bring you solace, it does jack shit for your kid. Step up.

11 comments:

  1. Thinking for ourselves. Amen.

    I believe this is one of the few pieces of advice I will take without questioning.

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  2. Speak it!

    Three new studies:

    You know that 80% of parents with an autistic child divorce trope? It's a myth. Autism has no effect on divorce rates or family structure.

    You know how gluten-free / casein-free diets are supposed to be part of the answer? Oops, eliminating gluten and casein from the diets of children with autism had no impact on their behavior, sleep or bowel patterns.

    You know how some people have food allergies and that may be part of autism? "If you look at the numbers, roughly half of the people who believe they have an allergy, do not". .

    But you know what else?

    Yep, some parents of autistic children divorce.

    Yep, some kids do seem to do better on a gf/cf diet.

    Yep, some people are bothered by eating some foods. For example, I've learned not to eat much raw spinach.

    I do try to keep humble, but you know, I fail often.

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  3. Aw, man. Do I have to? I was just gettin' so used to drinkin' the Kool-Aid and kickin' back. And dropping my g's while I was at it. Dammit, I want someone else to think for me.

    Liz, while I can eat spinach, sadly, I don't think I can drink wine very much. I'm on a TFSF (tannin-free/sulfite-free) diet. I've found that it tremendously improves some digestive-related factors for me.

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  4. Anonymous5:41 PM

    Thank you for saying that none of us are experts on autism, but all of us have individual experiences that we can draw wisdom from. What you choose to do with that wisdom is up to you. But choose, and choose wisely.

    Kudos, Shannon. You are tremendous.

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  5. I think that thinking for ourselves is the key here. Doing what we think would best benefit our own child, and not everyone else's. I don't give people shit when they say they vaccinate. I don't want people giving me shit when I choose not to, regardless of what my belief of vaccines are. It's really nobody's business, and I don't go spouting my opinions off the rooftops (for the record, I don't really have any opinion of it, well, I do, but not a big opinion, I just go with what my gut tells me, and whether people think that's stupid, or smart, I don't particularly care). Now, if someone wants to get into a healthy, unheated discussion about it, I have no problem talking about it.

    I just want pro and anti vaccine people to realize that everyone is different, and there is no right answer. Unfortunately, until that happens, I tend to cover my ears and say la la la la la. Or in cases of the internet, I cover my eyes and say the same thing!

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  6. There is just so much info out there to sort through when it comes to what is "best" for our kids with autism.

    One thing I have learned, and hold onto as a mother, is that I alone have the insight, the natural intuition, the strongest desire of anyone to do what will benefit my son.I'm not in this for the money, the recognition, or the publicity. Its all about love.

    Give me ideas, teach me about the new technology, offer assistance and support- but don't hold my choices against me. I am the mom, and I know best what will help my son.

    Good blog, Squidalicious. I wish I had seen it sooner.

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  7. Well said.

    Thinking for yourself. Most cults and herds discourage it because they don't want you to think, they just want you to follow. Follow because"They know the truth" and then they supply you with misinformation. It's sad, really.

    Arming yourself with all of the information possible is the best thing you can do for your child(ren). Advocate for them. They are children, first and foremost.

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  8. Great site! I agree that vaccines are not the cause. I would like someone to figure out what's causing the increase in autism, allergies, and auto-immune diseases (anything else beginning with an "a"? I have my suspicions, but they're not rooted in anything factual.

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  9. Anonymous1:29 PM

    But sometimes Squid, my head just hurts and I need to stop and not worry about anything for a few minutes.

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  10. Elise, of course. (I just came home from purchasing another comic book from the Marvel: Civil War vein.) But you do think long and hard before you speak, or act, yes?

    Statia: You need to know what both sides are saying, but that doesn't mean they deserve equal weight. Again, it's about belief vs. research. Akin to Intelligent Design vs. Evolution (the NOVA episode Intelligent Design on Trial is worth your time:

    http://www.pbs.org/wgbh/nova/beta/evolution/intelligent-design-trial.html).

    Consider Alison Singer, formerly of Autism Speaks, currently of the Autism Science Foundation. When she speaks on autism and vaccinations, on why parents would make scientifically refuted choices, she does so with diplomacy and compassion:

    http://www.blogher.com/autism-science-foundation-president-alison-singer-speaks

    When antivaccionationist J.B. Handley of Age of Autism speaks about Alison, he does so with rage and contempt:

    "Alison Singer Mispeaks at Yale: Flaming Moron or a Flaming Liar?"

    http://www.ageofautism.com/2010/05/alison-singer-mispeaks-at-yale-flaming-moron-or-a-flaming-liar.html

    There are children who have legitimate reactions to vaccines - but those reaction are rare. I think a lot of parents - not all - become aware of their children's delays around the same time those kids get the big vaccinations. Each case is unique. But there is a lot of vehement misinformation out there, and you need to be able to parse it without falling into the emotional traps that people like J.B. Hanley lay so expertly.

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Respectful disagreement encouraged.