I Will Be Speaking in PA in April

I am on a blogging break for the time being, but thought I would mention a speaking engagement that I have on April 25th at a wonderful event put together by ASD HOPE.

They have invited me to speak at their Mother to Mother Luncheon, a lovely day of tea and comfort at Christian Life Assembly Church Women's Plaza. I will be speaking on the Priceless Perspectives Found in Autism Parenting which expounds on this post in my Autism in God's Economy series

The luncheon is free and there is still room for 25 women, but I understand it is filling up fast. So if you are in the Harrisburg PA area and would like a day with your sorority sisters, check into it.

Thanks to ASD HOPE for giving autism moms a special day.

Taking a Blogging Break

... to catch up with life. Well to try to gain some ground anyway.

Will be back in early September.

AIA 2.0

The blog she is a'changing.  A little.

When I started writing four years ago, things were very different.  New developments or relevant media coverage was few and far between.  Now, even when I am spending hours a day reading, I can't keep up with all the developments.  Autism could have its own news channel.

So I am going to shift things a bit here, but wont change them dramatically.  I assume you have already noticed the new look.  I will be announcing my new sponsor soon, but I will only have one sponsor.  And I will start posting a round up of stories that you may be interested in with limited or no comments, but won't stop posting my usual commentary.

And as Age of Autism is becoming the "newspaper of record" for our community, I will consider my blog an adjunct to it.  My own personal editorial page if you will.

I hope the changes will be helpful to you.

Ginger

Full Disclosure in Correcting My Error In Writing About Other's Errors

Last week David Kirby posted this HuffPo piece. I posted it to my site.

A short time later, Mr. Kirby posted this to the EOH list, outing well known autism author, Roy Richard Grinker, Ph. D., as someone who was posting anonymously in the comments section.

RE: This comment on Huffpost:

“Unfortunately, Mr. Kirby continues to believe that California's DDS enrollment figures constitute epidemiological data. They do not. The author even makes a claim about statistical significance! He also introduces a new term into the discussion -- "full spectrum" -- (which he suggests is equivalent to Autistic Disorder) -- and states that the DDS counts only Autistic Disorder, not PDD-NOS, or Asperger's, or Down's Syndrome children with autism, or any other phenotype. This is absolutely wrong. Not even the best epidemiological studies are particularly good at distinguishing among the subtypes. It is truly disappointing to see the Huffington Post continue to publish phony epidemiology.”

Signed: Mfano

But “backstage” I see that his email is actually rgrink@gwu.edu

If Dr. Grinker would like to debate this subject out in the open, using his real name, I would be more than happy to take part. You would think that someone of his stature would have more pressing things to do with George Washington University’s time and bandwidth than send anonymous, erroneous comments to national political blogs.

I also posted this to my site.

A list member on the Evidence of Harm list noted that Dr. Grinker has a habit of posting anonymously to talk about his own work.

Update: From "celiacdaughter" on the EOH list:
...If you search some of his (Mfano) previous posts you will also note that he enjoys using the third person when discussing himself:

"So Foresam, tell us: how Grinker should look for autistic adults? The woman Grinker and Chew wrote about in the blog wasn't on record anywhere as autistic. Grinker doesn't say, but she probably bit herself and smeared feces too. No one missed her. She was called mentally retarded and given lots of treatment and care. She just wasn't called autistic"...

I also posted this to my site.

Then a little while later, Mr. Kirby announced that he had inadvertently broken the HuffPo privacy policy in making the information public and apologized for the breach.

Dear List members

I have been informed by the editors of the Huffington Post that it is against the rules to reveal the identity of people who post comments on the blog.

I was not aware of that rule.

I apologize to Huffpost and, particularly, to Dr. Grinker, for the violation. Please do not attempt to contact him directly. He made his comment in the full belief that his identity would not be revealed, and we all need to respect that decision.

Again, my apologies to everyone.

David

I did not see the post.

Kristina Chew Ph. D. wrote to me and asked that I remove the information on Dr. Grinker. Dr. Chew is a co-author of Dr. Grinker.

I checked the EOH list and found Mr. Kirby’s apology. And sent her this reply.

Hi Kristina,

I just read all this and am genuinely unsure of what to do here.

Let me think about this.

Ginger

As I was thinking about the ethics involved, an email arrived from Mr. Kirby arrived asking me to remove the information in deference to Dr. Grinker.

I then decided to remove the information in an attempt to “keep the peace”.

Dr. Chew noted that I had forgotten to remove Dr. Grinker's name from the labels, so I did.

I also removed four comments from the post that referred to the deleted information as they only served to pique one's interest in the deleted information.

kristina has left a new comment on your post "The California Numbers: Autism Declining Among Th...":

In your "update," you quote David Kirby's message on the EoH Yahoogroups List in which he revealed Roy Richard Grinker's identity, as well as some additional messages from the EoH Yahoogroups List on this matter. Mr. Kirby's revelation of Prof. Grinker's identity was a violation of the policy of the Huffington Post. It is therefore inappropriate for the EoH messages to still appear on your blog.

Thank you very much.
Kristina Chew
Auitm

Sincerely,
Kristina Chew
http://www.autismvox.com

kristina has left a new comment on your post "The California Numbers: Autism Declining Among Th...":

Thanks very much, Ginger. As you've removed the update, perhaps it might also be possible to remove the tag for Roy Grinker? Best wishes from Kristina Chew

autismvox.com

Posted by kristina to Adventures in Autism at 7:07 PM

Camille has left a new comment on your post "The California Numbers: Autism Declining Among Th...":

Any comment on the way David Kirby outed the commenter he didn't agree with to the EoHarm yahoo! group?

Do you think it's OK that he outed an anonymous commenter? I guess you did because you posted the details of the outing here, approvingly.

Do you think Kirby ought to apologize to Grinker in public? Do you think Arianna needs to apologize for bamboozling her commenters into thinking they were anonymous to the bloggers?

Posted by Camille to Adventures in Autism at 12:17 AM

Ginger has left a new comment on your post "The California Numbers: Autism Declining Among Th...":

Well Camille, commenting on all that would kinda defeat the point of taking it down, now wouldn't it?

Posted by Ginger to Adventures in Autism at 9:11 AM

After reading discussion of the incident today, I realized that I had fallen into the same trap that I accuse main stream media of doing, making editorial decisions based on politics. I have replaced all the information so everything is back on the record.

I should not have taken the information down.

I apologize for doing it.

Today I reposted the information and sent the following email to Kristina Chew, Roy Grinker and David Kirby:

At the request of Dr. Chew and Mr. Kirby (who related Dr. Grinker's wish), the information on Dr. Grinker's anonymous posting on HuffPo was removed from my site. I was very reluctant to do it, but did so to keep the peace and try to honor the requests of those involved.

After seeing the fall out from my decision, it is apparent to me that my choice was a poor one and I have corrected it by reposting the information. I will be following it up with a discussion of the matter in a separate post. All of this information is relevant to the autism debate, Dr. Grinker's deception, Mr. Kirby's breaking of HuffPo rules (unknowingly or not), Mr. Kirby's public apology, Dr. Grinker's lack of any kind of mea culpa (as far as I know), Mr. Kirby's and Dr. Chew's request to have the information taken down, and my poor choice to self-censor after the fact.

One of my central complaints in the autism debate is the strangle hold on information that prevents the public from making informed choices on who to trust and what advice to take. When I removed the information I violated my own policy and took part in something that I have been criticizing for three years.

If any of us are to be of help to those with autism and their families, openness, transparency and integrity are essential. To be as frank as I can be, everyone needs to stop worrying about their bull shit reputations and do the right thing. If you make a mistake, then apologize and clean up your mess as best you can and face the consequences.

Any of us with letters after our name or books on autism don't have the maturity to do that, then we should not be a part of this discussion. Too many people's lives depend on its outcome.

Sincerely,
Ginger Taylor, M.S.

I try to run an honest blog, I have tried to be as open and transparent as I have challenged others to be. I will work harder to maintain that standard in the future.

I am sorry for the lapse in judgment.

Something Not Autism

...And now for something completely different.

5 Things Meme

I've been tagged. Apparently Ms. Pickel wants to know more about me. Hmmm... who am I again?

My friend Tammy emailed me the other day and said, "How are you other than that stuff? How are YOU? Not the mother, not the wife, the GINGER..." I have not written her back because I could not think of anything.

So I am gonna pretend that there is no such thing as Autism for the rest of the day.

The instructions:

Remove the blog in the top spot from the following list and bump everyone up one place. Then add your blog at the bottom of the list:

DaisyBones
sleepless in cologne
Spaghetti Harvest
The Mommy's Getaway Blog
Adopt Two Boys
Adventures In Autism



Here are the questions:


What were you doing 10 years ago?

I was a happy girl, planning my wedding.



I had just finished grad school and was two weeks away from my marrying my sweet Scott.



Oh look at us.... We were just babies. If we only knew then....

My only cares in the world were ordering an additional wedding cake for the extra, last minute guests...



which worked out nicely.

And camouflaging my sisters tattoos and her hot, hot punkness so she did not take the spotlight from Moi at my own wedding.

Before:



After:



Everything worked out beautifully.


What were you doing 1 year ago?

Crying.

That was the best of times, this was the worst of times.

To say that things were bad one year ago would be a bit of an understatement. Two years into Chandler's diagnosis, we finally got his diet under control, his IEP and interventions in place and I thought things were settling down. Not so. I put together that the school he was attending was mishandling the disabled and at-risk kids in Chandler's class.

Because it was our church's school, we naively believed that the administration would want to know what was going on so they could fix it. Because churches are honest, right? Not so much. Instead of addressing the problem, they harassed us, threw our kids out of school breaking half a dozen laws, threw us out of our leadership positions in the church, slandered us to our friends and family and told them that they were not allowed to talk to us about what happened. So many of them just stopped talking to us and we became estranged from most of our family that are under the influence of said "church". That is what Jesus would do, right?

(apparently I can only go about 15 minutes pretending that autism does not exist.)

So falling deeper and deeper in debt, we sold our house and decided to get away from the pollution (both relational and environmental), put our house in LA on the market and made an offer on a house in Maine.

(shhh... can you hear that sound? Is that the highway? An airplaine? No. It is the breeze moving through the tress. Ahhh....)


Five Snacks You Enjoy:

Chocolate with almonds
Brie and crackers
Chocolate with strawberries
Orange Juice
Chocolate with anything or nothing


Five Songs That You Know All The Lyrics To:

Jesus Loves Me
It's the End of the World as Know it (And I Feel Fine)
Chasing Cars
Everything by They Might Be Giants
Everything by The Police


Five Things You Would Do If You Were a Millionaire:

Build a big, safe house for Chandler
HBOT
Start a foundation to pay for DAN treatment for ASD families
Hire a trainer
Have a trust fund to care for Chan after we pass on


Five Bad Habits:

Addiction to Complex Carbohydrates
Addiction to screens (computer, tv, ipod, any screen will do. Information is my brain crack.)
Staying up too late
Worrying about tomorrow
Stupid crap like this


Five Things You Like To Do:

Write
Read the Bible
Talk
Tickle my sons
Pick apart TV shows with Scott


Five Things You Would Never Wear Again:

My heart on my sleeve


Five favorite toys:

My computer
My Tivo
My Ipod
My cell
My steam carpet cleaner


Now, 5 people to tag….
Hollywood Farm Girl
GerAmyUm
Ruth
Injecting Sense
Kim Stagliano

Memorial: C. Chandler Perine

Marine Corps 1st Lt. C. Chandler Perine was my uncle and he loved me.

He died in the service of his country on November 15, 1970 at the age of 26 when the plane he was piloting suffered mechanical failure during take off from McGuire AFB, New Jersey

Chan, my father's younger brother, served as a helicopter pilot in Vietnam, a football player in college and "class flirt" in high school.

My youngest son, Chandler Perine Taylor, is named in his honor.