Autism: A Community Divided.

You have the warriors.

And then there’s the rest of us.

The warriors will, literally, stop at nothing to “fix” their children.

While the rest of us don’t view our children as being broken and in need of repair.

The warriors are very angry and are certain of the “cause” and “cure” for autism.

While the rest of us believe, and know, that there’s more to learn and discover about the “causes” and that there’s definitely not a “cure” for something still considered a mystery.

Like the nation, our community is extremely divided, and I do not know how we can come together.

The warriors don’t  understand those of us who don’t subject our children to rather intensive and extensive therapies just so we can have the “perfect” child.

No.  I don’t think they like us very much at all.

The warriors also don’t appreciate it if you don’t agree with them by claiming that vaccines are the “primary” cause of autism.

Is it Mercury?There is enormous controversy over whether or not mercury has played a role in the explosion of neurological disorders (NDs) amongst our children. We feel strongly that mercury has played a primary role in the ND epidemic, and that it’s removal from the bodies of our children is a key to recovery.

They actually send hate mail if you say it ain’t so.

Regardless of our differences, I believe we all love our children, and we all do what we feel is right for them.

In my opinion, there’s only wrong way to parent is that’s to not be a parent (4. a protector or guardian) at all.

In a blog post yesterday, the About Autism Guide, Lisa Jo, made an eloquent statement that only a loving parent to a child on the spectrum could make,

I’m determined to find my child’s strengths, and help him to build on them. … I’m determined to see my child as a person who can do many things – some of them very well indeed.

I am no warrior mom. I’d been a mom regardless if my child had autism or not. I’d stick up for him when needed no matter what as well. But I more accept his limitations and autism than to subject him to something that no where does it state for sure will help ‘this’ child.

A few weeks ago, I wrote a post titled, Waiting to Hear You’re Fired! It spoke of my involvement with Generation Rescue (and considering the fact that I’m still receiving angel email must mean they still considered me to be part of their armed platoon).

In a recent email, a mother made this statement that made my blood go cold.

I feel like every second he’s not diagnosed by a medical professional, I’m wasting time that I could be fixing him.

Look.  If a parent wants to utilize Gen R’s Action Plan then that’s their choice.  I just wish they would stop trying to “fix” their children.

If the rest of us don’t

…go beyond mainstream medicine to focus on the true cause and cure

Does this imply that we haven’t confronted

…the reality that doctors (us) trusted unwittingly failed (us) and that a government that (we) believed would protect (us) from unsafe drugs did not?

If we don’t

…experience feelings of anger, despair and (become) overwhelmed or question basic human decency

Does this mean we don’t care about our children?  That we don’t love them… as much?

Are we so deep in the dark that we don’t know

… what is true?

And choose not to believe that

In the end, the truth always prevails?

This community desperately needs to be healed.

The time is now for us to come together.

It’s time for the shields and armor to come down so we can become one.

Because if comments like these continue to be made, we will remain divided.

(6) Autismnewsbeat says:
“I’m determined to find my child’s strengths, and help him to build on them. … I’m determined to see my child as a person who can do many things – some of them very well indeed.”Bravo, Lisa! And how is this any different than how we would approach an NT child?

The “Warrior Mom” fad is a disingenuous bit of marketing piffle that translates into rejecting a child’s personality, the same way we are told to reject dry, flaky skin; or static cling; or calcium scale on our dishware. And worse yet, the Warrior Mom ethos is rooted not in empirical evidence, or the best advice of real medical experts, but rather the spoiled tantrums of a D-list actress who still thinks vaccines contain anti-freeze.

Health care fraud is an $80 billion a year racket, and the bad guys know about autism. Be skeptical. Given lack of a control group, and enough time, grape Jello® will look like an effective treatment for autism.

(7) Terry says:
There is no point in arguing positions of parents. One cannot decide what is best for another. However, Autism Newsbeat, what science are you talking about specifically? The medical community does not even agree that the rate of autism is actually rising and not better or alternative diagnosis. You have to have been living under a rock to believe this. Tell us ANB, what treatments are suggested? What therapies are proven? Do you have time to wait around? You are going to be waiting a long time. Maybe in another decade, a decision will be made that, in fact, the autism rate has risen. If you are happy with your child the way he or she is and when you are gone that he or she will be “just fine,” good for you. Do not be a fool however. Your so called, “science” always starts with a hypothesis and a guniea pig. Take for example, chelation. The study has been cancelled (its considered unethical). It is not unethical however to give a kid risperdal off-label (thats right it was being given by many docs to control behavior). It causes severe weight gain, tics and diabetes. But, it is now scientifcially “valid.” Follow the money. Vitamins have not been studied. Who is going to pay for the reasearch? Fish Oil? Same thing. CoQ10? Ditto. The mainstream medical docs have been using it for years! Ketogenic diet? It works. Modified atkins diet? It works. Studies? Very few. No money in it. Wake up people!

5 Responses

  1. I guess I fall in the Dad’s who dare to care camp. I just can not sit around and wait any longer. I did that until my son’s doctor committed suicide last year. I then went to a mainstream doctor who was an early adopter of vaccinations in his practice. He actually used his own money to travel around our county to give children polio shots. He is now one of the converted and is a Defeat Autism Now Doctor. He was the first mainstream medical professional to look me in the eyes in the exam room and say I think vaccines may have contributed to your sons autism. “What the ***” How can that happen?

    Autism, leftovers and warmed up Turkey… Collateral Damage, Legacy, and the Old Guard
    http://www.causecast.org/member/tanners-dad/blog_posts/436

  2. I don’t think it’s a matter of caring or not caring. And statements like that only cause the divide to widen.

    I think we all care about our children.

    I wonder what our children will say about all this bickering.

    I wonder what they will think of us.

    Will they articulate through their own words (not pre-programmed ones from mom and dad) and look at us and actually be grateful?

    Or will they be bitter for what we did… or didn’t do for them?

  3. You can reach out to the adult community and embrace them like autismvox has. Check out the autism hub members, read what those who do not want to be cured have to say.

    I got hate mail when I wrote several years ago about David Kirby and his book. I try to ignore the other side, well actually there are more than two sides since some say that the adults are higher functioning and their lower functioning kids cannot be like that ever, so a few sides.

    I try to stay out as much as possible and focus on raising and living with autism. All these children will be adults someday and then what? We need to get services in place.

    I am surprised when I read in yahoo groups messages from parents whose kid is 18 or 19 and they dont know what to do.

    What have they been doing all these years? My son is 13 and we are discussing college and what he wants to do. An online friend told me that at a district mtg the other night they had some lady who is a specialist speak and she said that the kids would end up being janitors and nothing else and to get used to it. What a downer.

    I try to change the channel when Jenny is on saying her son can remember when he was autistic, my son does not need to hear the way these people spew about autism. That is such an insult.

    These other parents will not accept their child. I read of one that lost her house, job and supposedly got the kid back and said would not do it the same way.

    My son who is 13 had five words until he was 4 and through speech and OT therapy and special ed preschool he learned to talk. He was held back in first grade to do it fully in general ed and then gen ed through 5th grade. He is still autistic has social issues and some oddities about him. These parents that say their kid is cured or recovered have kids that are under 6. I wonder what will happen when they get to middle school and issues arise that they ignored and bullying and other things take place. They need to wake up.

  4. I agree. Our children will be adults one day, and we need to start preparing them now. And I don’t mean for janitorial service (I’m not knocking janitors).

  5. Hi, Adonya! I’ve gotta say, I think the issues are very complicated – more than just two-sided, but rather multi-faceted. Most “non-warriors” work hard to help their children with autism succeed, and many embrace non-ABA approaches such as floortime, RDI, Sonrise…

    Meanwhile, ALL good parents are working to help their children find their abilities, plan for their futures, and overcome limitations that make their lives less fulfilling.

    To me, at least, the “warrior” idea is more about “fighting tooth and nail” (and leaving no stone unturned no matter what’s under it) versus some version of moderation and accommodation.

    In other words, when I say “I’m not a mother warrior,” I’m not saying “I don’t support biomedical intervention for kids with autism.” I suspect that diet change and nutritional enhancement is sometimes very effective indeed.

    Rather, I’m suggesting that we, as parents, can do two things: BOTH help our children to grow and thrive AND enjoy our lives together. I’m saying we can do ABA or Floortime or GFCF diets AND go to the beach.

    Hey – I think I just wrote my blog for today!

    Thanks, Adonya!

    Lisa (About.com Guide to Autism)

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