Tuesday, May 5, 2009

Dear Oprah - just read and listen with your heart

May 5 2009

Dear Oprah.


Like many people I love watching your shows.
The enthousiasm with which you embrace the stories people have to tell is heartwarming.

I've learned a lot.

One of the things was to stand up for what you consider is true.
Make people hear what needs to be heard.

That's why I started out a new autism organization in my country: so parents, autists and siblings will be heard.
I intended it to be for my country only.

But now I hear about the way Jenny McCarthy is able to spread her message, I feel I have to talk to you in person.
It's my time to speak up.

Have you ever considered what spreading the message of Mrs. McCarthy means for parents of autistic children?

(I hope you have used twitter the way it is supposed to be used. You follow your followers, so you're not only sending your tweet and get bored waiting for a reaction which never comes. You have to follow them too, so you receive their thoughts too.)

  • It means parents are made guilty of causing autism.
  • Parents who saw the autism signs before the vaccinations are completely wrong.
  • It means children with autism are lesser children than children who are not autistic.
  • It means that people are less willing to donate for research to find the real reasons of autism.
I can't believe your team hasn't take the time to see whether the claims of Jenny McCarthy are true.
Writing a few books on a subject doesn't make a message true. (It loads the wallet. I agree with that.)

Let's address some issues.

vaccinations

I know there's a large group of parents believing vaccinations caused autism in their children.

Do you know the scientist who started to publish this message was a fraud?
He publicly admitted it and withdrew himself from the researchgroup.
He himself told that there was no connection at all between autism and vaccinations.
But one way or another people wanted to ignore the true message.

In Japan vaccinations stopped and autism was rising the same way as in other countries.
In the countries where thimerosal isn't used anymore autism is rising.

Do you know that thimerosal was used to prevent the growth of fungi and bacteria in large badges of vaccine, in the time that every shot needed to be drawn from a bottle?
It's no longer needed now all shots are wrapped individually.
Still, autism is rising.

I see research results cited in ways that make me shiver.
Some research didn't even exist!!
Some people belief everything they don't understand.

Reading scientific research results needs specific scientific knowledge.
I know. I've lectured the subject.

So I also know that only good research can be trusted.

Why don't you enable people to attend classes so they can learn everything about discriminating good from bad research, and about drawing the right conclusions from the right data?

Autism

Mrs. McCarty's son Evan is believed to be/have been autistic.
You can read the story of the diagnosis ::here::.

Autism doesn't come with life-threatening seizures.
Seizures are not common in autism and are considered a symptom of a completely different problem.
(Somewhere I read Evan was in a car collision before his seizures.)
Brain damage can cause epilepsy.

It can even cause behaviour that mimicks autistic behaviour.
But it is not autism.

The young brain can restore functions, can repair damage. So maybe Evan is cured... but not from autism.

The diagnosis of autism needs more than lining objects.

A good diagnosis requires
  1. to rule out all medical problems as good as possible.
    Like vitamin deficiencies, gluten intolerance, epilepsy, metabolic diseases, brain damage etc etc.
  2. a good description of existing medical problems
  3. constructing a careful and well controlled family history
  4. ruling out all other psychiatric problems (by certain tests and other means)
  5. careful questioning parents, family members, teachers etc.
  6. observation with one way screen so the child can be observed without strange people in the room. If possible observation of communication with parents, and later alone with stranger. If possible during play, during structured and unstructured tasks.
  7. This all should be done by certified psychiatrists and psychologists specialised in children and adolescents.
    Teachers, social workers, pediatricians, neurologists and others are not able to make a reliable diagnosis.
  8. The diagnosis should be made based on the DSM (diagnostic and statistical manual of mental disorders) which is most recent. The number of the DSM should be mentioned.
  9. The diagnosis should be verified every 2 years. Because of the advance of science, but also because change and additional symptoms will be documented.
Jenny McCarthy has brought autism to the attention of millions.

But have you ever asked whether she represents the millions of parents with autistic children?

We don't feel she does.

Because we know autism can't be cured.

We can try to gain development in our children by training them.
By training every little aspect of life.
Not once, not twice, but day after day after day.

My son could draw how to fasten his shoelaces.
But it took him until he was 11 to master the art, and he has to relearn every so many months.

We autism moms can't afford others to teach our children to learn how to shower.
We have to spend all our energy to guide every element of the process and when we forget to tell our kids to put shampoo on their heads, their hairs won't be washed.

Oh, all autistic kids are different.
These were just examples of the small things we have to deal with.

We want to tell you how life is without money to pay it all.

Do you know that some people live too far away from people who are able to diagnose them properly? We need mobile teams to observe the children in their own home.
D you know that people have to drive hours for treatment?
Mobile teams need to go out to the families, to advice them, to teach them the basics of those expensive therapies.

I'm a psychologist.
I was able to recognize autism in my children at a very early age.
Long before they were 1.
Money is needed to listen to moms who share my experience, so we're able to use our knowledge to make a test other parents can use.

I was able to use those far too expensive therapies, because I learned the skills during my studies, and I was able to teach my children to talk, to walk.
Modelling each behaviour like clay.
Old, strong, sticky clay that crumbled at the edges.
What was learned one day was lost the other, and when it was relearned, something else was gone.
The desperate journey of almost every mom of a child with autism.

I dared to look in the mirror and ask myself where I'd done things wrong.
Did I cause autism in my children?
Did I fail to give them everything they needed?
Did I deserve this?

People on the street telling me I should discipline my child, because he yelled.
Teachers telling me I was a bad mother because my child wasn't behaving.
Council representatives telling me they would bring me to court if I wouldn't force my child to go to school.
The place where he was bullied, where noises confused him, where he couldn't hear the teacher telling what to write down for homework.

Do you know autistic some children can't see whether someone feels ill or is angry at them?
Do you know that autistic children are told they should stop being the person they are, just because other people can't understand them?

I'm sure many parents worry about the future of their children.
Will they be able to work?
Will they be able to be happy?
Where are they going to live?

Does Jenny McCarthy worry about that too?

For normal autism moms life is a struggle that can only be fought one day at a time.

Most of them are exhausted almost all the time.

Autistic children have problems sleeping.
I only get 4 hours of sleep a night because of that.

Parents do all they can to help their children.
They sometimes resort to near torture and abuse, just because someone suggested a new miracle cure.

Do you know children died because their parents believed chelation therapy would cure them?
Do you know today children fought their parents today because they wanted to inject their children with vitamins, just because someone claimed they helped?

I can go on for hours.
And so can all those millions of parents.

Autism has many faces

Autism has many faces and not only that of Jenny McCarthy's son.

And all those faces have different stories, different problems to tackle every day.

There are enough grown up autists who can tell their own story, without others telling it for them.
They know autism from the utter inside.

All those people have talents, beautiful feelings, and problems to deal with, because society doesn't accept them as unique individuals, but wants them to be normal.(whatever that is)
They are not able to develop the way they would naturally, because they need to live up to expectations of society.

Even Jenny wanted her son to be normal.

Now she's preaching a miracle cure.

This means that she's saying to the world:
"See, my son is cured and all other autistic kids can be cured too."

She's telling all those other parents they're failing, because none of our children are cured.

How is society going to act when she keeps on telling autism can be cured?

We will be told we have failed as parents, because we didn't cure our autistic children.

What will society do with us?
Take our children away and put us into jail?

Dear Oprah.

Giving Jenny McCarthy her own show doesn't do justice to parents of autistic children.
And it certainly doesn't help.

She's not an expert on the subject.
Maybe an expert on her son.
We parents of autistic children respect each other for what we do to help our children, so we want to respect her.

But not as a representative of us all.
And certainly not as an expert on autism.

Please give all parents of autistic children a voice.

Donate for more research, make those mobile services I mentioned available for people who need a good diagnosis and a start to deal with autism.
make re-evaluation possible for all children, so parents are not told their child has autism when it's something else.

Create a place where parents can exchange their experiences.

Donate for proper research in all those miracle cures, so people won't try out everything in good faith, and thus postponing therapies which really help.

Please Oprah....

We have to tell our stories too.
And most days I feel they're at least as interesting as the life of Jenny and her son.
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6 comments:

  1. this is a wonderful, well thought out and well worded letter. im not the parent of an autistic child, but i do have 2 sons. the youngest is going through infant vaccines and of course my husband and i second guess everything. jenny was great on mtv, but i think parents really need to look at the hard science behind her claims. i hope someone with her celeb status stands up for those of us that are more reasonable and people stop running for the exit just because a pretty face yelled "fire".

    ps: i LOVE your comment on the side bar, "please dont comment on my english when you cant write my dutch" americans (sometimes im ashamed to admit being one) can be so obtuse... your writing is easy to understand, the technicalities dont have to be spot on, most native speakers of english cant get every nuance right either.

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  2. This is a beautiful fervent plea. Many of the things you said also apply to children with ADHD.

    I can help you with sleep problems. I have a great source for that. And I can show you how to teach your child to shower. There is a special way to teach that sticks better.

    Bless you in your mission to educate and enlighten others about the real life-in-the-trenches parenting children with autism. I am right here beside you doing the same for children with ADHD.

    Please let me know how I can ease things for you and your family. It would be my honor.

    Yours sincerely in parenting success,
    Debra Sale Wendler

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  3. Your open letter is very interesting.
    My nephew is autistic. His mom (my sister) works with a national organization called Autism Speaks. She travels the U.S. trying to get insurance coverage for certain autism therapy.
    There may be more than one cause for autism. For some it may be vaccinations, for others food, etc. There MAY be an underlying gene that gives a predisposition to the development of autism when something external or internal triggers autism.

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  4. This was a great letter and wonderful thoughts to learn from. Thanks for stopping by. Hope you come back again. Have a great night.

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  5. Oprah once cared about making sure her show was right.

    Now it seems to be about ratings.

    Jenny McCarthy is a dangerous woman spouting pseudo science that she doesn't understand, and who is going to be responsible for a major epidemic, eventually, among the unvaccinated children in the world.

    Giving her a platform for her outlandish ideas is ridiculous.

    I'm so glad to see someone from the autistic community stand up and complain as loudly as the medical community is.

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  6. It does seem to have become evident that vaccination for some kids may be what tips the hand towards autism, allergies and other things. The problem is that we don't have any real screening mechanism for that. Vaccinations cannot continue to be a one size fits all kind of medical procedure that is basically forced on everyone. Really! When you think about it......it's very hard to make sense of what is true and what is not true with all the different studies contradicting one another.

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