They've beaten long odds: The diagnosis and labeling of Asperger's

Dan Coulter's advice:
My son and I have Asperger's syndrome. I've written, produced and directed 10 DVDs about Asperger's syndrome and autism. I've just finished a DVD about people who have beaten long odds and found steady employment. A common link among these employees is that they all disclosed the condition to their employers, got some reasonable accommodations and worked hard to modify challenging behaviors.

Changing the diagnosis to "autism spectrum disorder" will make job applicants less likely to disclose – and employers less likely to understand and accept – their capabilities and challenges.

In the real world, continuing to use the diagnosis of Asperger's syndrome as a condition in the autism spectrum does no harm and will help talented, deserving people find and keep employment.

The diagnosis of Asperger's syndrome should be maintained in the Diagnostic and Statistical Manual of Mental Disorders.

Read another Aspergers story. Thanks to the Letters editor of the New York Times for printing Dan's letter on Nov. 16.

Between sandwich bites: Testicular surgery against a father’s wishes

This is a father's complaint to the Nevada State Board of Medical Examiners:

To whom it may concern, from one who it has concerned greatly:

It is said that the greatest skill of a doctor is their bedside manners. I could agree with this in theory, the theory being predicated on the hope, my hope that the doctor is operating on all cylinders, is integrated, aligned, smart and most importantly honest. A doctor can have a wonderful personality and a wonderful bedside manner and yet, be completely deceptive, dishonest and completely unconcerned with our welfare when compared to standard practices and of course legal liability. It appears in our mostly litigious society doctors are scared of lawsuit and therefore will be most versed in how to avoid lawsuit secondary to their professional skill.

Such is the case with Dr. J.

I met her on what may have been considered a routine pre-surgical consult. The surgery we discussed was an exploratory surgery for my son's ascended right testicle. I asked lots of questions. In my world, this surgery was going to be a simple procedure because I felt a lump on my son's upper right pubic bone, which gave me assurance that his testicle was there and merely required some medical assistance to return it to where it belonged in his scrotum.

It seemed it would be a simple procedure on the doctor’s part as well because she was far more concerned with eating her lunch in either a recently vacated office or an office she has recently moved into. I followed her into this room to continue my line of questioning. I asked her about her rather flippant line where she said his testicle would be removed if it was less than the size of her pinky fingernail, while ceremoniously indicating such with her extended digits.

I asked her- "What if it is exactly the size of your fingernail?"

"I would still remove it," she replied between bites of her sandwich.

"Really? I don't like that idea. If it is the size of your fingernail, then I expect it stays in. In fact, I'd prefer if his testicle is not the size to move, then it is left alone," I said firmly. She nodded in agreement with her mouth full.

Little did I know at this point I should have pursued a more explicit confirmation of my request, as in I should have gotten this confirmation in detailed affirmation, notarized and with a medical examiner witness.

Because as it turned out later, the doctor removed my son's right ascended testicle without actually measuring it at all. To further add insult to injury to my son and to my duty to protect as Father, she claimed that it was a pre-cancerous situation and that the testicle would be tested for cancer cells. This of course was just a ruse and was never carried out. Of course a young struggling testicle will show no signs of cancer. The main problem I learned from my multiple attempts to find a pediatric urological expert witness is that Doctor J. toed the line of medical malpractice liability. If anything atrophic (by her view) is left in the body, then that is a more litigious situation then actually following the patient's parent's request. In fact, the doctor now sanctimoniously hides behind even more medical legalese by claiming that she did what was "clearly in the best interest of the patient."

How does she know what is in the best interest of the patient?

Oh, because she refers to "a multitude of medical research findings" which only gives her a bigger trench to sit with her other than conscious behavior.

I clearly told her what is in the best interest of my son and she affirmed my request. If she was somehow medically bound to complete my son's procedure with a forced removal of his testicle, then she should have told me clearly at our meeting. Because if she told me at our pre-surgical operation meeting that she is required by medical directives to avoid any future lawsuit and to remove my son's testicle I clearly would have opted out of such a railroaded situation and continued my exploration of alternative therapy.

This is the crux of my crucifixion. And this is also where I hope and pray the doctor is nailed for negligence.

There are errors of omission and then there are errors of commission.

And then there are errors of both. Errors of commission are answering a question incorrectly, which she did. Failing to answer a question or to answer a question in full is an error of omission. She did both while gleefully eating her packed lunch. Such contempt.

I choose at this time to abbreviate my letter and my complaint. I'm sure there are things I could have done differently and things I could have said differently, yet clearly someone in the room of pre-surgical consultation was licensed as the professional, yet clearly my curious questioning was indignantly refused. If I asked nothing, I could accept my results. If I refused nothing, I could accept my results. If I clearly asked and directed the doctor and she told me clearly what she was legally required to do, then I would have accepted an entirely different outcome.

The doctor should listen closer to patients, especially parents.

So in fact, bedside manners are very important. Maybe all of this would have been very different had the doctor demonstrated polite, concerned, engaged listening. And I know it would have been a significantly better outcome if the doctor revealed direct honesty of what is medically required in her surgical procedure. She even could have done this between sandwich bites, or preferably after lunch.

Advice to parents: Specify your preferences for your child’s surgery in writing beforehand and have the surgeon sign it.

Read another story about the lack of informed consent for testicular cancer.

Thanks to Bryan Brey for sharing his story.

More than about asterisks and cheating: Steroids, major league baseball, and high school suicides

Taylor Hooton was a junior in high school, a tall, thin pitcher on his baseball team in Plano, Texas. His coach told him he needed to get bigger for his senior year to compete effectively, so Taylor took steroids, as did many of his teammates. He rapidly gained more than 25 pounds. And he began to display the aggressiveness that is characteristic of steroid abuse. He confessed his "aggressive depression" to his brother.

He experienced the depression in coming off the steroids. He committed suicide, leaving the vial of steroids wrapped in an American flag.

His father, Don Hooton, said, "Taylor was a top-notch student. He, like so many, was doing it because he thought it might make him better."

Today we read about the Mitchell Report on the use of steroids by 89 of major league baseball's top players – Barry Bonds, Roger Clemens, Andy Pettite, Ken Caminiti, Jose Canseco, Mo Vaughn, Miguel Tejada, Jason Giambi…

As Taylor's father said, "This is more than about asterisks and cheating; it's about the lives and health of our kids."

Advice to parents of high school athletes: Become an impassioned patient advocate like Don Hooton.

Browse for similar stories in our index at the very bottom of this page, or read an athlete’s story.

The source story comes from today’s New York Times and the London Times of Dec. 1. Thanks, Owen Slot.

Her leg has healed but his conscience hasn’t: Misdiagnosed broken foot

Here’s a father’s story:

Fatherhood also comes with tears and feelings of emptiness or stupidity. I almost rushed Lucille to the hospital for her uncontrollable cry … a cry that ended when my wife came home and gave her food instead of the bottle of water I had been supplying.



Nothing comes close to the time when Caroline’s broken foot was misdiagnosed as a sprained ankle. The doctor advised me to help her try walking with the leg.

 A week or so later, the leg was swollen and had excruciating pain. I sought for a second opinion. The leg had been broken. Caroline cried, and I cried.

 Her leg has healed sufficiently, for which I am eternally grateful.

I wish I could say the same thing for the hurt I have suffered for helping her walk on a broken leg.


Advice: Only hindsight is 20-20. If you make a mistake, remember that you can only prevent what you can predict. Forgive yourself.

Read a father patient advocate story, or read the Argus Observer’s
source story.

Like father, unlike son: Athletes and undiagnosed heart conditions

Boston Celtics star Reggie Lewis. Loyola Marymount basketball star Hank Gathers. Damien Nash of the Denver Broncos. Olympic gold-medal skater Sergei Grinkov. Atlanta Hawks center Jason Collier.

All these top athletes died from heart failure while young and in their prime.

Tim Cox didn’t want that to happen to his son, Tim Cox, Jr., a top high school basketball and football player. The athlete’s grandfather had a thickening of the heart muscle (HCM, hypertrophic cardiomyopathy) and had died at 63, and Tim, Senior had had an electrocardiogram (EKG) showing the same condition. The athlete’s parents prevailed on the young sports star to have an EKG, and it came back positive.

They and the cardiologist had to have a series of tough conversations with their son, who lives to play sports. Tim, Jr. no longer plays competitively. He’ll never help his basketball team get to the state tournament. His parents even wonder if they did the right thing. But what if they hadn’t had him tested and his heart had failed? "How could we have lived with ourselves?!" asked his mother.

Advice to athletes: Ask your doctor to give you a physical exam with the inexpensive 12-point screening recommended by the American Heart Association, which has eight questions and four simple tests.

Read another of our athlete stories, or read Gretchen Reynolds’ source story in the New York Times of June 3.

The fund was his baby: An activist diabetes patient advocate

In addition to a career as a successful California real estate developer, Robert Klein got another job: overseeing the $3 billion stem-cell-research fund that he initiated and California voters approved in November 2004.

Here’s Ms. Dana Reeve’s story about him:

The fund was Bob's baby, and it grew out of a crisis in his life. When juvenile diabetes was diagnosed in his young son, Bob Klein immediately began researching cutting-edge science in pursuit of a cure. Stem cells emerged as the clear-front runner, but the moratorium in federal funding was hindering research. So Bob began to design, draft and push through the enormous piece of legislation known as Proposition 71.

In the last few months of his life, my husband, Christopher Reeve, joined forces with Bob to raise awareness about Prop 71. They held fundraisers together, and before he died Chris taped a commercial for TV. Bob wanted to run the ads but wouldn't do it without my permission. He didn't want to exploit the situation. I gave the go-ahead. It's what Christopher would have wanted.

Prop 71 passed, and led to the creation of the California Institute for Regenerative Medicine. Now Robert Klein leads its governing board. Time magazine honored him in 2005 as one of the most 100 influential people. He’s using his wealth, passion and influence to find a cure for his son’s disease.

Read another of our hero stories, or read the source stories of Dana Reeve and Wikipedia.

A point guard has done more to publicize this than my last 400 publications: Eye cancer

Derek Fisher showed up with his baby girl Tatum at the New York office of Dr. David Abramson at Sloan-Kettering Cancer Center on Monday. The doctor was able to inject a strong anti-cancer drug into her eye’s blood vessels, probably killing the retinoblastoma (eye cancer) and saving her eye.

The following day, Derek, a point guard now in the playoffs with his Utah Jazz teammates, spoke at length about the family’s ordeal, generating publicity. Then he flew back to Salt Lake City, and helped his team win Game 2. “A very good point guard has done more to publicize this than my last 400 publications combined. It’s quite extraordinary,” Dr. Abramson said.

Advice for parent advocates: Use your contacts to spread the word about successful new treatments.

Read another of our celebrity patient advocate stories, or Peter May’s source story in today’s Boston Globe, “In the Bonus Situation: Fisher scored points for cancer treatment”.

Don't rock the boat, the experts told her father: Misdiagnosis

Pat's journey has taken decades. And she isn't cured. She lives with her illness the way diabetics live with theirs. But now she has graduated cum laude from college, and has a job. She hopes to work in human services and counsel people. "This is the next phase of my life, helping other people not be trapped by this illness."

Now 54, she had lived for long years in the best hospitals, diagnosed and misdiagnosed: depression. Paranoia. Bipolarity. Schizophrenia. But her father didn’t listen to the experts who told him not to rock the boat, to just to let her be stable, and live the life she knew, sheltered and safe.

The secrets of her eventual success in getting to health? Her father’s persistence. A creative hospital program that helped her re-invent her life. A new drug, Clozaril. And as her proud father says, the fact that "Pat never once said, 'I can't do something.'" By themselves, none of these were enough, but together, they have given her back her life.

Read her full story in Beverly Beckham‘s article in the Boston Globe.