Susan's Blog

Thursday, February 18, 2010

Religion, Politics, the Great Pumpkin, and Autism

A Rant.

Linus should probably add one more thing to that litany of stuff he can’t ever talk about with others: autism.

There are times when I am really brought low by the fractious animosity and venom in the autism community. I step back right now and I think, “How can this be? Aren’t we all in the same boat, trying to raise our families and take care of our kids?” Can’t we agree to disagree? I mean, who says any two parents ever could agree on anything? It’s a-different, that’s okay, as Nat would say!

From the very start we are at each other’s throats. I remember being tyrannized by the local La Leche League about how I had to breastfeed or else! I remember being at the playground and realizing my stroller was totally out of style! I remember the sin of giving my baby snacks with real sugar in them, or buying Nat off-brand baby clothes (Gasp! not Hannah Anderson!) … and this was even before autism was a twinkle in someone’s eye. It reminds me of that song, “Let’s Call the Whole Thing Off:”

I Must Be A Total Sloth
I say — epidural, you say– natural
I say “what twaddle,” to breast versus bottle,
Perego! — Sport Buggies!
Cloth diapers! — No, Huggies!
I guess I’m a total sloth.

In the Autism Stone Age, when Nat was a baby, it seemed like the biggest problem was finding other autism parents for support, period. Oh, yeah, and the right school program and therapies to help him.

Maybe we can all just agree that we define the word “help” differently? What’s wrong with that? Why is it so important that the other “side” is also proven wrong?

Maybe I’m just looking for love in all the wrong places. I just wish we could all get along and remember that we are truly all in this together. Now I’m going to press “Publish Post” and pray.


Well, you know where I stand on all the baby and breastfeeding related stuff. πŸ˜‰ It's funny, in my autism mom support group, we have quite a few moms who are pretty dedicated to the biomed route, and then you have moms like me, who, well…aren't. We don't care. We all laugh and have a good time and get along with each other and just agree to disagree on the points about autism treatment that we don't see eye to eye. We realize that we're all trying to do what's right for OUR families, and that we all love our kids, and that hardcore autism dogma has no place in our fuzzy little bubble of autism love. πŸ™‚ So do not despair, Susan. All is not lost. Once a month (and sometimes more) a bunch of biomed and neurodiversity moms all go out to dinner together and drink and eat and laugh and tell dirty jokes and enjoy every minute of each other's company. Go out and buy that heater for hell. πŸ˜‰

Oh, and I totally shop at Wal Mart and Target for my baby clothes. Hanna Andersen is just too bling for my blood, dude.

— added by ASDmomNC on Thursday, February 18, 2010 at 10:53 am

Is there an urgent need for people to be right before they can be civil these days?

The amount of vitriol on the internet in comments is astonishing. Yes, people are frustrated, but there has to be a better way. There is way too mush hate out there.

— added by Someone Said on Thursday, February 18, 2010 at 10:54 am

Ughhh… I agree completely. My son is a biomed success story, but we're completely in the closet because I have no desire to engage in a debate about it. I can only believe that there must be many different causes of autism and like other medical/neurological issues, what works for some does not apply to all. I believe any autism parent who says that they tried something and it did/didn't work for their child and yet if I were to say to someone (Kevin Leitch, for instance) that I "cured" (talk about a loaded word!) my child's autism with a biomed approach, I'd be subjected to lots of scrutiny and portrayed as a crazy, deranged parent who's out of touch with reality and unwilling to love my child as he was (Not true!). So, as a sane person, with a son who is now healthy and fully functional in the world, I keep my opinions to myself on the subject even amongst family and friends. And it feels extremely unfair and sad because I could have really used some open-minded support on the tough road that we had to travel to get where we are today. It's a shame.

I just think it's an emotionally loaded situation with so much finger pointing going on — vaccines, tainted fish, environmental toxins, genetics, too much testosterone in utero, blah, blah, blah. Everyone feels a need to pick a side, a safe side determined by what worked for them. Or on the opposing side of what failed them despite their determination and valiant efforts. I can only guess that there are many different autisms and that until the medical establishment can distinguish them and direct parents toward the best path for their child's success, we will continue to grapple with these primal insecurities and the defensiveness that results.

It's a good topic, Susan. Why don't you get all the ND bloggers and the biomed bloggers together for a conference and organize a peace treaty. Have everyone agree to spend their energy and precious words on advancing research and ways to help our children of all capabilities rather than wasting it on bashing each other.


— added by Anonymous on Thursday, February 18, 2010 at 12:04 pm

I know exactly what you mean! Our childbirth instructor was all about breastfeeding, cloth diapers, no meds during delivery and was hardcore pushy about it! I'm more of the if it works for you, go for it type. Some things that I wouldn't necessarily try work for other people and there is nothing wrong with that. Some choice I make for my kids are subject to scrutiny and judgement by others and I don't understand why. Max's growth hormone shots are a hot topic, especially among my husband's friends (he was against it in the beginning)and I hear comments about why can't we leave him alone and just let him be. It gets to the point where you wonder where all these people got their medical degrees and why it's their business…if it's not harming anyone and it works for you, why should anyone else be concerned? What I choose for Jarrett is not the same as my friend's choices for her daughter or my brother's for his son but we're all trying to do what's best for our individual children.

— added by cameramom on Thursday, February 18, 2010 at 12:12 pm

The hate exists b/c even those that claim to support all… don't…. True ND is accepting that what is right in my house, may not be right in your house and saying "what you do is your business and what I do is mine". That is acceptance. And until that occurs… acceptance and neurodiversity don't exist.

Breastfeeding… I'm one of those for whom it didn't happen… and personally… I loved disposable diapers πŸ™‚

I went to 1 autism support meeting. I no longer hold membership in my local autism society.

That acceptance thing I mentioned before….

— added by farmwifetwo on Thursday, February 18, 2010 at 12:36 pm

Anon – the Hub hates me b/c that biomed thing… my eldest was seriously ill on dairy. And yanno… he's disgustingly normal at 10. And I don't hesitate to say it either.

They hate me more b/c for my 8yr old.. the severe one… it didn't help at all.

So I fall in the… "do what you think is best" catagory and don't mind discussing the pros and cons or what happened… And geez… they don't like that b/c it has nothing to do with autism….

Whatever. As long as my kids are doing better that's all that matters. Right now we're doing paperwork after paperwork and attempting to change classrooms for the little one… I once thought integration was the best… now we're headed for special ed and self contained… I'm flexible, all I can do is the best I can for my children.

— added by farmwifetwo on Thursday, February 18, 2010 at 2:52 pm


— added by Susan Senator on Thursday, February 18, 2010 at 3:00 pm

I have tended to surround myself with other "go with what works for you" people because that has been my approach, pre-diagnosis (when I thought I was visiting Italy but it was really…Belgium? Norway? It wasn't Holland, there were no tulips) and later when we first heard an ASD dx. I immediately went to one email group for support and got several mothers flaming me for working full time, saying "our kids" need SAHMs. Gee, that really helped me feel good since my salary was needed, not optional.

Yet generally I haven't found too much of the judgmental eyebrow raising…I don't know if it's because I back away from the high conflict folks or just surround myself with the kind of people who can agree to disagree and then have that glass of pinot grigio and a good laugh.

It's not too far into 2010: Let's have a new year's resolution to help those who are being judgmental know how it makes us feel, in the hopes that they will show more consideration.

— added by Shoshana Mama on Thursday, February 18, 2010 at 7:50 pm

I'm gonna' go out on a limb and say I think it goes much deeper than the ASD community. Just think of all the "stay at home mom vs. working mom" %$^&$.

Many people seem to need to justify their experiences at the expense of other people. You just do the best you can with what you got. — Cathy in CT

— added by Cathby on Thursday, February 18, 2010 at 9:30 pm

I'm not sure if you're sorta alluding to the whole vaccination crap thing going on or something else but I can relate no matter what it is you are specifically speaking to! One of my dearest friends is a huge proponent of inclusion, and she let's me know how very wrong I am for not being the same. Many people are still doing a lot of biomed, I kinda gave it up a while back to focus more on accepting him and not trying to change or cure him. I'm to the point now that I have very few friends with kids with Autism, but then, it's hard to be friends with people with kids that don't have it. But, I'm happy with what I have. I will just agree to disagree with people, but I probably won't hang with 'em!!

— added by Bonnie on Thursday, February 18, 2010 at 9:40 pm

I always read, but normally don't comment. I have to say that I love this post! Makes me feel better about what I do…or don't do, as the case may be : )

— added by mnmzmom on Thursday, February 18, 2010 at 11:00 pm

I think the judgements are coming from fear, and it gets me down too. Thank goodness there is usually someone around who cares enough to offer a hand and pull me up out of my momentary hole. And then I want to do that for someone else. And so on, and so on. Let's start a different kind of trend! "Be kind, for everyone you meet is fighting a hard battle. "~Plato …Em's Mom

— added by Anonymous on Thursday, February 18, 2010 at 11:08 pm

I think if you see great results then you will naturally believe that biomed and certain interventions are right for your child. There are many kids getting better that parents just don't know about. Here's one.

— added by Anonymous on Friday, February 19, 2010 at 8:22 am