Saturday, April 18, 2009

The Division in the Autism "Community" SUCKS!

It's Autism Awareness Month - can't we all just TRY to get along?
We - mothers (and fathers) of kids with Autism are a community, divided.
I hate it! Hate is a strong word. But, it really sums up how I feel about this. It bothers me. We all have something in common, a child with autism. That should unite us, yet instead we are so very divided. Attacking each other for our beliefs on whether autism was a result of an environmental trigger or vaccines or genetic. Attacking each other for our avenues for our choices in therapies or interventions.
Why the hostility?
I have many many friends who are also moms of autistic kids, like myself. I'm part of several parent groups online and off and I wouldn't have it any other way. Some of my friends are like me and others very different. I have friends who do biomed and friends who don't. Friends who believe their child was autistic from birth & genetics and others who feel it was environmental or vaccines. I have friends with kids on the diet (like my son) and friends who think the diet is a waste of money. I have friends who do chelation and/or HBOT and friends who do not.
Those who know me, or read my blog know that I practice the GFCF diet for my child. I've also shared info on some supplements that he uses. I don't get into nitty gritty on dosages or meds we may or may not use as I don't think that's the general public's business. This past week I reviewed two books that deal with biomed - Jenny McCarthy's new book and LeeAnn Whiffen's book. Immediately I witnessed fallout among my circle of "friends" because I go on record as doing some biomed for my child. How dare I? I've taken a side. I'm Biomed. I'm the evil. I SUCK! Keywords: MY CHILD. Tonight, I am sick of walking on eggshells and trying to not offend anyone. This is my child we are talking about. What you do with yours is your business and I'm not chastising you for making different choices for your child. Keywords: YOUR CHILD.
I've made a point to be Switzerland as much as possible and not cast judgement or throw stones at others for their choices. Yet, I continue to be on the receiving end of stones and I'm feeling pretty beat up. When the community is so busy fighting and at odds with each other over causes and treatment, where is it getting?
Nowhere, and fast.
----------------------------- Hi, I'm hellokittiemama and I'm a mother of 2 very special children, living at the Jersey Shore. You can find me blogging my mad life with an autistic genius and a neurotypical diva, the gluten & casein free diet, vaccination choice, and more... over at The Bon Bon Gazette - because you know that stay at home moms really do sit around all day watching soaps and eating bon-bons. Got Bon Bons?


  1. I agree. I don't do any of the biomed things, but if they work for someone, then by all means, explore the possibilities.

    I am on the message boards at Autism Speaks, and you wouldn't believe the drama and hatred over there. And it's mostly coming from and directed towards young adults with autism.

  2. I'm relived to know I'm not the only one who has been so upset about this division. Thank you for articulating it. I agree with all your points!

    I really struggle with the community who ridicule parents for "presenting ASD as a tragedy" just because we don't blow sunshine out our ass 24-7. I don't see my daughter's disabilities as tragedies, but I want to be able to talk about all aspects of our lives: our pride, our challenges, laugh a little, cry a little.

    I hear so often those with high functioning aspergers/autism saying "Don't Speak for Us" -- which I think is a valid request.I understand the fear about eugenics... there are interesting points being made. but, if YOU dont want me to speak for you, please don't speak for me. Please don't assume that all ASD kids and adults are the 'same.' Many families living with ASD have a great number of challenges.

    I too wish we could all unite and respect our different opinions and the wide spectrum of children, treatments, and contributing factors that 'cause' autism. I don't know where I fall on all the issues. I only know this: I love my little girl. Every parent loves their child. I won't judge anyone and I hope for the same in return. We're all just doing our best. Let's just respect each other, listen and learn with an open heart.

    thanks again for the great post!

  3. Excellent post, MT. I've been thinking about this issue a lot, and I think you covered it very well.

  4. I agree that everyone should do what they think is best for their child and not pass judgement on others who make different choices. If we were all the same their would never be any new ideas. I read many different blogs and don't agree with everything in them but still enjoy reading about people's lives dealing with Autism. I don't believe in throwing the baby out with the bath water as the saying goes. God bless : )

  5. I just don't listen anymore. I have five children on the spectrum. I also have Aspergers. What's great about having Aspergers is that is it easy to just tune people out. I used to really care, and listen to others opinion, but then I got mad. I realized my children need my energy -not the naysayers. They dont need one single drop of my energy - so I just ignore people now. Whatever. They are my kids. Your getting there. Your hitting the wall. It will turn around for you. Good for You!!!!

  6. Tell me about I! I'm a DAN! physician and I get called a quack all the time. Yes, this division is upsetting, especially when people are downright cruel - I've seen such horrible comments about Jenny McCarthy. Whatever their views on treatment, people shouldn't be so nasty and personal!

    Chun Wong

  7. I liked this post. I too feel a little out of place at my local parents with children with autism support group, since I am one of the only ones doing biomed and ABA. Some hate what I am doing, but I guess I'm OK with that, as I see it working fabulously for my son!

  8. (argh! comment formatting is weirding out...)

    MT, this is great! And a really important discussion to have. It has saddened me to watch the division happening between those who believe that autism is a genetic evolution and those who believe it is "fixable." And those who believe that it is genetic and just leave it alone.
    When I first started this blog, I was contacted by a very prominent adult Aspie who demanded that I change the name of the blog because "Autism Sucks" was offensive. He contacted me via email and twitter and had others do the same to put pressure on me.You can see how well that strong-arm tactic worked.


  9. I have theories as to why non-biomed parents react so negatively... One being that the rhetoric which usually accompanies talk of biomed and vaccinations is so absolute, when we KNOW that autism manifests for a variety of reasons...

    So parents who know that the diets and the vitamins and all the rest haven't helped their children are left with the feelings of either acceptance (as in my case) or deep depression and rejection of their children for being broken.

    It drives me bonkers when I hear Jenny McCarthy claiming she has found a cure for autism. She has found a therapy that works for her son, and that's fine... so why does she have to go on Oprah and Larry King and all the rest and say... "I know how to fix your child too"

    And, another source of anger towards the "Warrior mom" perspective is that it's the only one getting attention in mainstream media...

    So the public consumes images of children screaming and banging their heads... and hears about feces smearing and aggression... and that becomes the picture of autism in their minds... Causing further rejection and alienation within the larger public.

    It seems that those who are desperate for a cure play up the negatives to the extreme... Autism Lobby Groups exploit these challenging behaviours to promote their own agenda.

    I think that families have to do what works for them... but I think that it's important to realize that because autism is so complex in its manifestations, there are multiple contributing factors (including genetics and neurological ones)... not a single cause (vaccinations) and a single cure (GFCF diet).

  10. If we knew what caused Autism in every child, we would NOT have autism. Each journey is unique and therefore, terrifying to others if their child does not fall suit to the same treatment that worked for another. The defense mechanism is a reactive response and dissappointment! My child is 15 and when diagnosed, many said "oh I never heard of Autism". I am grateful for the attention it receives and controversy has brought further research and variety in treatment that is uniquely necessary to a population that is alike but so different in so many ways. Embrace the controversy as a tool that will make change...but follow your gut and ignore the nay-sayers!!!

  11. The worst are the non biomed blog moms who spend endless amounts of energy bashing Jenny McCarthy or anyone who believes in diets, a vaccine connection and so on. I don't see that happening so much with the pro biomed blogs. Not taking sides. Every child is different. I just feel blogs such as these are arrogant and shows their true insecurities. I think they are also extremely jealous of the successes many parents have had.


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