Milestones

photo credit-Tim Green
creative commons license

Life is full of so many milestones for your kids-the first time they roll over, crawl, and talk.  Some kids hit all of their milestones "on time", some are delayed, and some never hit certain milestones.  Others, they hit some other milestones...


like the first time they're admitted to an inpatient psych unit.


Buddy Boy is almost 13 now, and his behavior has become more problematic since this last summer. He's been not only much more argumentative, but more angry (screaming, yelling obscenities, and sometimes hitting, kicking, and throwing things).  We've figured it was the result of puberty kicking in, and old medication regimens becoming ineffective.  Besides his autism and ADHD, Buddy Boy also carries a psych diagnosis, and has occasionally had suicidal ideations since he was at least 4 (it really hurt to write that last sentence).

We've been working with Buddy Boy's psychiatrist to get him evened out, but mounting behavioral problems (with daily calls from school) finally led to a mutual agreement that led to him having "homebound" school starting in mid-September.  We still haven't had an IEP to chart a future for school.

Over the weekend Buddy Boy was perseverating over an erector set project that we've been working on.  The kit is a bit above his level, but he's been wanting to do it, so we've been helping him alot.  Saturday Buddy Boy announced that we promised him we would complete it by the end of the weekend (neither of us had promised this, but he insisted).  I worked two hours on it with him on Saturday, and another two hours on Sunday.  Today he managed to finish it, but it (a motorized forklift) didn't work right.

When Liz pulled into the garage from picking up Sweet Pea from school, Buddy Boy was standing in the garage, reeking of the smell of week killer.  He spit two batteries out of his mouth before starting a tirade against Liz, telling her how this was all her fault, and that he had drank a cup of week killer.

Liz grabbed the week killer and Buddy Boy, told Sweet Pea to stay in the house, and sped to the Emergency Department (ED).  She rightly judged that she'd get there quicker driving him than calling and waiting for an ambulance.  She called me from there, where I joined her.

In the past, Buddy Boy has threatened to do things like cut himself, but we've always been able to fairly easily and quickly talk him into putting the knife down.

When I got to the ED, Buddy Boy was sitting on a cart, with a fairly angry look on his face.  He told me couldn't wait to get out of there, so that he could really get back at us.  Evidently he had repeatedly voiced to the doctors at the ED that if he went home, he would repeat the same thing.  So they wouldn't release him.  He admitted after awhile that he hadn't swallowed any batteries (he initially claimed he had, so they had to x-ray him), but still said he drank "some" of the weed killer, though from talking to poison control he was showing no signs of it.

He remained relatively calm until we took him to the unit.  They insisted he take off his "Ben 10" wristband, and he was told that neither of us could stay with him.  He lost it, screaming, crying, saying he wanted to go home.  Liz held it together, though it had to have been one of the worst days she's had.  She's only been away from him for a total of 4 nights since he was born (two to attend the out of state funeral of her mother, and two to take a short trip to see a friend).  I've been away to at least one conference a year, but still it will be hard tonight.

I'm just hoping he can get it together enough to get out of there quickly.  We've done anything to avoid inpatient placement, as I just don't believe in a "good" inpatient setting.

Prayers and well wishes welcomed.

If They (She?) Only Had a Heart

photo-Thomas Hawk
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In "The Wizard of Oz" the Tin Man joins Dorothy, the Scarecrow, and the Cowardly Lion on a journey to Emerald City to see the Wizard, in hopes of obtaining a heart.  Paul Corby probably wishes all he had to do was stand up and fight a wicked witch.  Instead, he had to submit himself to a committee of people that dole out hearts for transplant at the Hospital of the University of Pennsylvania (or HUP, as they like to be called).

Usually the committees that decide whether you are "qualified" to receive a heart are fairly secret.  People within the institution may know who they are, but they don't usually put their names out for public consumption.  Such committees that dole out scarce medical resources have a long and storied history.  The original such committee was formed in Seattle when kidney dialysis first became available in the early 1960's.  This committee, dubbed "The God Committee", made decisions on who should be lucky enough to receive dialysis based at least partially on social factors (who had the best job, good character, etc.).  In later years the public was appalled by their somewhat arbitrary means of choosing who would get dialysis (live) and who would not (and would die).  Modern committees that decide who gets scarce solid organ transplants (hearts, livers, lungs, kidneys) have drawn up criteria that make things somewhat more objective (severe heart failure, low levels of oxygen, etc.).  Also included in the criteria are some "softer" things such as the ability to undergo complex medical treatment and emotional stability.

It would come as no surprise to anyone who has had to deal with the stares and snide remarks when you go out in public with an autistic person that the committee to dole out hearts at HUP declined Paul Corby as a suitable candidate.  Because, well, Paul's autistic.  Which means he probably appears to those who first meet him as a bit odd.  Maybe even scary.  Because he's different.  Liable to talk louder.  Or perseverate a bit.  Dr. Susan Brozena, a cardiologist at HUP, sent Paul's mother a letter that said

"I have recommended against transplant given his psychiatric issues, autism, the complexity of the process, multiple procedures, and the unknown and unpredictable effect of steroids on behavior."

There was no indication that the group of people (if indeed, it was a group that decided.  There is some indication that Dr. Brozena consulted with only one other doctor) who decided this did not consult with anyone who actually treats autistic patients to determine his suitability to undergo treatment.  Dr. Brozena evidently feels that it's much easier, when a scarce organ is involved, to go for either money or fame, rather than to try and give out organs equitably.  In a scandal at Los Angeles' UCLA Medical Center, four members of the Japanese Yakuza received organ transplants, allegedly jumping ahead of others on the waiting list. Two of those Yakuza later donated $100,000 each to the medical center.  I'm sure HUP realizes that Paul Corby doesn't have that kind of scratch laying around ready to donate to them.  Which is perhaps why they wish he'd JUST GO AWAY.  Again, from the letter

...if you want to pursue transplant consideration for him, you of course have the option of a second opinion at another center.

 Autism is not a death sentence.  Unless, of course, it's combined with a failing heart, in which case it's enough to get you disqualified for a chance at a cure.

Other stories on this subject can be found in The Washington Post, New York Daily News, Strollerderby blog, and Wesley Smith's blog.

A change.org petition on this is located here.

HUP accepts comments here.

If you'd like to contact Dr. Brozena and let her know your opinion, her published email address is:

brozenas@uphs.upenn.edu

Her other published contact info is as follows:

University of Pennsylvania Health System
Heart Failure/Transplant Program
6 Penn Tower
3400 Spruce Street
Philadelphia, PA 19104

Office: (215) 615-0812
Fax: (215) 615-0828

I think that Dr. Brozena needs to know that it's OK to change her mind.

Say it Ain't So, Joe

Arrrrrggggh ...

After hearing of the horrendous shootings in a Colorado movie theater, I mentioned to my wife Liz that "At least no one has mentioned the 'A word'".  "What?" she said.  "You know, said that the shooter was autistic".

The next day, I hear that news commentator Joe Scarborough said,

"As soon as I hear about this shooting, I knew who it was. I knew it was a young, white male, probably from an affluent neighborhood, disconnected from society — it happens time and time again. Most of it has to do with mental health; you have these people that are somewhere, I believe, on the autism scale," said Scarborough, whose son has Asperger's syndrome. "I don't know if that's the case here, but it happens more often than not. People that can walk around in society, they can function on college campuses — they can even excel on college campuses — but are socially disconnected."

 While I've come to expect such drivel from uniformed people that lump all seemingly similar things together, do I really want to get the same stuff from someone who is the father of someone on the autism scale spectrum?  No.

Well, old Joe felt the heat after his comments, and has backpedaled.

But that's not what bothers me. 

What bothers me is that Joe Scarborough has outed himself as one wholly disconnected father.  I mean, come on.  Who that has someone autistic in their family refers to them as being on the autism scale?  I mean, what responsible parent hasn't been to enough IEP meetings, read enough literature, talked enough to know that it's the autism spectrum?  And who, who has a son that struggles to be understood and to fit in, would even think of associating autism with what happened in Colorado?  I mean, how exactly will such comments lead to greater understanding and acceptance of those who are autistic?

Joe's phoning it in.  It appears he's the dad that mothers all complain about.  The one that disengages, backs off, and lets mom handle it.  The ugly, stereotypical disconnected dad. 

I'm sorry for Joe, and more sorry for Mrs. Scarborough and their son.

One small step for man ...

Many times, it's not the big things in life that make it worth it, but the seemingly smaller, more ordinary ones.  Such is the case this week.

Buddy Boy is now 12.5 years old.  We have tried to teach him to tie his shoes in past years, but never really had success.  Even though we really didn't push all that hard, it has been "one of those things" that has led to a lot of consternation and frustration all around.  Buddy Boy seemed to get to a point where he decided that he would NEVER be able to tie his own shoes.  But like riding a bicycle, I felt that that was not so, as he had plenty of dexterity, both to play video games as well as build all sorts of cool things with LEGO kits.  He can follow instructions for the LEGO kits pretty well, too.

We last took Buddy Boy shopping for shoes near the end of the school year.  It was obvious that there were extremely limited styles available in Velcro strapped shoes in his size (like 3 pairs over 6 stores).  We bought the style he liked the best of the lot, and resolved that THIS would be the year that we made a push to get him tying his own shoes, as we knew he would be much happier with the wider selection of really cool shoes out there.

We decided to wait until after our vacation, to give Buddy Boy time to relax after the stress of the school year.  Well, after a bit of resistance/bribing/coaching/reinforcement over the last two weeks, VOILA'!

Buddy Boy is now officially able to tie shoes!   He is to the point where if he doesn't get it the first time, he is able to start over, self correct, and get it right the next time.  This is a HUGE accomplishment.

Life is good (even if it's more than a bit HOT lately).

A Hero in New Jersey

I've seen a lot of stories that have almost made me come out of blogging hibernation.  But this one just speaks to me, on many different levels, that I had to put my 2 cents in.

Stu Chaifetz is a divorced 44 year old dad that lives in New Jersey.  His 10 year old son, Aiken, lives mostly with him.  I don't know what he does, but he strikes me as a "regular guy" that finally got fed up with being run around by the system, and found an effective way to get to the bottom of what was bothering his son, and correct it.  I highly encourage you to watch this video if you haven't seen it yet.



A couple of things strike me about his story, and how he responded to the school system and the teachers.  First of all, he saw behavior that was atypical for his kid.  Aiken never lashed out, but all of a sudden was reported to be hitting teachers.  I think most school systems are similar across the country.  No matter how "good" the school system is, the individual child is assumed to be the cause of the child's behavior, and the thought that it could possibly be from something happening in the school environment external to the child is never entertained (We're Professionals, We Can Do NO Wrong).  Stu tried to work with the system (he, like the rest of us, was left little choice).  He went to meetings, revisited the IEP, tried to institute revisions of the behavioral plan after a specialist observed his son.  But things still didn't feel right to Stu, so he dropped a small audio recorder in Aiken's pocket, and sent him to school.

Now, if a kid was randomly being harassed by someone at the school, it might take weeks to catch that person in the act.  But Stu caught this in one day.  ONE DAY.  Which tells me such things were happening MOST DAYS.  Rather than being in a nurturing environment, Aiken is told to "shut his mouth" and called a bastard.  His teachers (by this, I include whoever it was-teacher or aides-that are caught on tape) display no sense of proper decorum, and instead exploit Aiken's anxiety regarding going to his mother's for the weekend by taunting him.

I have long advocated for audio visual recording in all public areas in a school, tapes of which would be available for review to parents and outside neutral parties whenever an "incident report" was filed on a child.  Audio and video recordings are great "neutral" observers.  Just ask Rodney King, as well as the truck driver that was senselessly pulled from his truck and beaten after that incident 20 years ago.  Incidents like what happened to Aiken surely take place every day across this country.  I am sure that most teachers are good, hardworking and dedicated to the welfare of their students.  And I suppose that although most of them might initially feel uncomfortable knowing that their actions were subject to review, most would also realize that such tapes could also be used to exonerate them if they were falsely accused.

My son Buddy Boy was almost expelled from Kindergarten 6 years ago, mostly because the principal of the school had it in for him.  It took nearly a year, a lawyer, and lots of money to straighten that out, but after being transferred to another school, he did fine.

Stu Chaifetz has repeatedly said that he's not at war with the school district.  He's even said that he doesn't want to sue the district.  He only wants what each of us would want for our child-justice.  He wants an apology, and he wants those involved to find other employment.  Unfortunately, the teacher from the classroom has been reassigned to the high school.  Stu, unsurprisingly, is steamed, and has started lobbying the state legislature to pass a law to try to prevent such a thing from happening again.  Meanwhile, Aiken's former teacher has hired a lawyer and threatened to sue Stu.  Stu has basically said "Bring. It. On."

I wouldn't bet against Stu in that matchup.

Missing Important Social Clues

Photo credit-topgold
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One of the hallmarks of autism that is often cited is that autistics tend to miss important social clues. I must admit that this is something that we see often with our son, Buddy Boy (though he has made great strides in carving out "his own way" of initiating interactions).

Most people think that if they see someone that "doesn't get" typical social clues, that that must mean that that person is autistic. Well, not necessarily.

Take David Geier, for instance.

As the whole world now knows, David's dad, Mark Geier, had an emergency suspension of his right to practice medicine recently, due to the medical board catching up with his totally off the wall (and dangerous) antics in "treating" autistic patients.

As was patently clear from complaint against his father, David was up to his eyeballs in this, examining patients in his dad's office. David also had an appointment to the State of Maryland's Commission on Autism, which listed him as a "diagnostician". His one and only degree, an undergrad B.A. in Biology, in no way qualifies him for such a title.

Now, as anyone that follows politics in any part of the world knows, there are a certain portion of politicians and appointees that get caught up in scandals. And there is a certain way of conducting oneself that is expected in such situations. When one is caught up in a scandal, it may be OK to sit tight for a couple of days, to see if things blow over. But once you're actually charged with something, and if someone from the governor's office asks you to resign, you're toast. Your only acceptable course of action is to resign, as quickly and quietly as possible. Not to do so makes you look terrible, as well as causing needless embarrassment to the one who appointed you in the first place. Even really rich and important people know when to throw in the towel when they get caught.

Unfortunately, David Geier is the type of person my grandma would have said "...doesn't have the sense he was born with."

Once the whole scandal blew up, and the lengthy and detailed complaint made it obvious to all that this would not end well for the Geier's, one would think that David would have quit the autism commission. Well, he didn't.

Once he himself was charged with practicing medicine without a license, you would think that he would immediately recuse himself from any public position. Well, he didn't.

When David wouldn't/couldn't see the handwriting on the wall, he was asked to resign. As reported here, he refused.

So finally the governor of the state of Maryland had to come out and publicly fire him.

I'm thinking that the governor will not be so quick to appoint charlatans with transparently false credentials in the future. And much as I'd like to feel sorry for David Geier, I just can't.

The Pigeons Have Come Home to Roost

photo credit-Eric the Fish
Creative Commons license

A medical license is a precious thing. Most people that have one have worked darn hard to get it. They've put in decades of education, paid a lot of money, and sat for numerous exams. They usually feel proud to have earned their diploma, and often don't think much about their medical license, once they've passed the appropriate exams (that is, they don't think about it until they get close to their mandatory re-certification exams every 10 years). The license is often viewed as just "one more hoop" that they have to jump through before they can practice.

But perhaps they should think about their license a bit more. While their diploma from their university and certificates from post-graduate training are (mostly) their own, their license represents the social contract that society has with members of the professions. A medical license granted by the government gives one broad authority-you get to set up shop in your field, admit patients to the hospital, charge fees that are often paid (at least in part) by insurance companies and the government, and have people allow you to cause them all sorts of pain and embarrassment, all in the pursuit of curing or alleviating whatever ails the patient that walks through your door. The state allows members of the profession (collectively) to have great say in educational standards, and grants them at least some exclusivity (keeping competition from untrained persons suppressed, which also protects the public). In return, members of the profession have obligations towards the state/community in which they are licensed. They are to be honest, have a positive obligation to keep current in medical knowledge in their field, not practice in areas in which they are not trained, put the patients' welfare before their own, and always strive not to harm patients.

While it is upsetting when people in the community are hoodwinked by, say, a dishonest roofing contractor, people get more upset when a doctor acts unethically. Even in today's busy world, where people see multiple different doctors, the medical encounter between patient and physician remains an intensely personal one, "protected" by this social contract. It is because of this that people get more upset.

Fortunately, the profession, and the pubic, have a way of "righting the ship" when things go wrong. State medical boards are usually mainly staffed by physicians, with a few members of the general public. All of these members are usually appointed by the governor of the state, in a (fairly) non-political manner. The only compensation usually received typically is a small per diem to cover travel expenses to the capital city (which is usually where meetings are held).

In any profession there will be frauds and crackpots. That being said, my experience is that the vast majority of physicians have worked very hard to get where they are, and really seem to be motivated to do the best for their patients. But in order to retain the trust of the public it is necessary that those who practice fraudulently are weeded out.

It is a big deal to take someone's license away. As I mentioned, they have spent decades of their life preparing to sit for their exams, and invested hundred's of thousands of dollars, before ever seeing their first paying patient. Thus investigations of impropriety usually take time. A medical board is not in the business of stifling innovative practice, and must guard against disciplining doctors whose only crime is being smarter than the norm. But the board IS charged with protecting the public, and thus has to identify and discipline those who ignore their responsibility to practice in accord with scientifically sound practices, and who would view their license as merely a cash generating vehicle.

The Maryland State Board of Physicians has suspended the medical license of Mark Geier, M.D., in an emergency measure to protect the public while he has a hearing before final disposition. In their 48 page report, the Board details how Geier practiced bad medicine (making mis-diagnoses of precocious puberty without standard physical exam or laboratory findings being documented), performed fraudulent research (no consent forms, totally improper in-house IRB committee, poor research design and execution), and allowed his untrained and unlicensed son to practice medicine in his office in his absence. Kathleen (Neurodiversity Weblog) and Prometheus (A Photon in the Darkness) both have very good posts detailing a lot of the bad things he's done, and why he richly deserves to have his license yanked.

Reading through this report, one thing is eminently clear. Mark Geier will never practice medicine in Maryland again. Boards don't get this much damning evidence documented, and then let someone off with a slap on the wrist. While his final discipline may read something like "License revoked with no re-application for at least 5 years", there is no way that any future board will let him get his license back. Not after this.

In regards the other states that Geier has licenses to practice medicine, his license remains active at this time. That (in most cases) will automatically change once his permanent suspension or revocation action takes effect. Most state boards automatically put the same restriction on your license as other states do, unless you can prove to them that you don't deserve it. I am not aware of anyone ever overturning one of these automatic revocations. So while he technically can still practice somewhere else, one can take solace that that option will soon close for him.

While this SHOULD put an end to those spinning wild theories and foisting wholly unproven treatments on autistic patients, it won't. But perhaps it might give a few of those unethical practitioners that have medical licenses just a bit of pause now, as they realize that perhaps their own hucksterism might have the light of truth shined on it next.

Joe