No More Silence

I'm a get along kind of guy. I like to build concensus, and not rock the boat too much. I like to keep my mind open to different opinions, and different ways of doing things. But sometimes you have to draw a line in the sand.

Twenty years ago, the gay community was beseiged by a disease that was killing them off, and no one seemed to care. Several people in the gay community in New York came up with the "Silence=Death" campaign. It was a simple campaign to raise awareness amongst all of society of what was happening. They didn't have the internet, so they plastered posters all over town looking much like the one above.

I believe that the autism community is under a somewhat similar (though not yet as devastating) onslaught in this day and age. There are two main things that I see that are killing autistics. One is the physical and psychological abuse that is going on in institutions (and sometimes openly in society). The other is subjecting autistics to experimental treatments that have no scientific proof, and have killed people that were being treated. The biggest offender in this category is chelation (now sometimes referred to as "detoxification").

While I still respect any parent that respects and loves their child and is just trying to get the best interventions for them, I can no longer stay silent when they mention chelation as a possible option as treatment. Sometimes in the past I have not been as vocal as I should have been in informing them of the hazards of chelation. At the risk of losing friends, and of getting tossed off one local message board I am on, I can stay silent no longer.

Description of deaths from chelation can be found here and here. A good discussion of a 5 year old autistic child's death from chelation can be found on Kevin Leitch's blog here.

We have this great disseminator of information, the internet. I resolve to respond whenever I come across potentially dangerous practices. Not to denigrate the individuals involved, or to espouse one way of doing things over another. But to save lives. Period. And I encourage all of you to do the same.

The Heights We Go To

Photo credit-Bob Reck

In a story out of North Carolina that will sound familiar to all who have lived in suburban America, a local homeowner's association has forbidden an owner to put up a 6 foot fence (which is prohibited under their covenant).

What's unusual (probably not to most reading this list, but in general) is that the reason the homeowners wanted to put up a higher than allowed fence was to keep their young autistic son from eloping from their yard.

This is one of those common problems that we often have to face. In our family, we decided to put dead bolt locks on all of our outside doors (as well as our mudroom door) in order to keep Buddy Boy from eloping when he was younger. This is against our local building code, and if the city catches us, we'll likely be forced to remove them (our local code says that there must be a latch on the inside that can release the lock). While we appreciate that we put ourselves at slightly increased risk of not being able to get out of the house if there is a fire, for us the overwhelming problem was of having our son run out of the house, which unfortunately sits on a relatively busy street. We compensate for the fire scenario by having keys placed up high near the doors.

In the incident in the article:

...Michele and Rene Guyader hoped to build a 6-foot fence to keep their fast-growing boy from falling into a sewage drain hole at the back of their steeply sloping lot. The homeowners association of their Clayton subdivision turned them down. ...

One would think that your neighbors would execute some common sense and sensibility, but unfortunately this is usually in short supply in these local situations. Some of the biggest tyrants are to be found in positions of power in these local homeowners associations.

The homeowners association was asked by a reporter to respond:

Bailey, the architectural review committee member in the Guyaders' neighborhood, said he was not fully aware of the son's condition until contacted by a reporter. He would consider a 4-foot-tall fence, topped with a see-through lattice.

The Guyaders aren't sure yet that will work. They argue an exception to the covenant is warranted because they didn't know of their son's condition before moving into Cobblestone subdivision about a year ago.

I know Buddy Boy would make short work of a "see through lattice" if he really wanted to get over a fence.

"A man's home is his castle" is the old saying. Nowadays, that holds true only if the government doesn't have a tax lien on the house, you've complied with all local building codes, and the increasingly ominous homeowners covenants, which can dictate all sorts of things which you can and can't do to your house, including what color you can paint it. I've never lived in a place where I had to sign one of these things, and I hope to never have to.

I also hope that there will come a time when common sense prevails, and people can make common sense modifications to their own house when they need to for the safety of one of the occoupants.

Speaking of Magma

Today we celebrated Sweet Pea's 5th birthday. She's been looking forward to this for weeks. We've been counting down the days. My daughter has enough exuberance for the whole family. She gets excited over the most ordinary things. So when things out of the ordinary happen, she's over the top. Yesterday she says "Tomorrow's my birthday, everybody's going to be there, and I'll get to have CAKE! and ICE CREAM!, and PRESENTS!!!" I didn't think she'd ever get to sleep last night.

Rather than have a large kids party, we went with a fairly sedate celebration with just family (immediate family, aunt, uncle, and one great aunt). She wasn't sure what kind of theme she wanted for her party, but just said "Just so it's not BOY stuff." So we went with butterflies and flowers (all over the walls, with some butterflies hanging from threads from the ceiling), with a sun hanging from the light above the dining room table.

During the day today Liz did Sweet Pea's nails. Sweet Pea has been wanting to have nail polish for some time now, and Liz said she couldn't have it until she was 5. It was the first thing Sweet Pea showed me when I got home. "Look, daddy!" "It's pink, my favorite color!" "First we put on the polish, then we put on some oil, then we had to let it sit for a loooong time."

We had salad and pizza for dinner, then the required cake, ice cream, and presents. Sweet Pea had a great time. Buddy Boy had picked out a birthday card for her (with her favorite on it-Disney princesses). He can be very thoughtful, and does know what his sister likes.

Buddy Boy likes to talk (about things HE likes to talk about). He goes to social skills classes, which we think are helping him in responding appropriately to others, as well as getting his needs across.

We're sitting at the dinner table talking about my sister's dogs. Sweet Pea asks if they are females (they both are), and expresses the wish that they'll have puppies. I try to placate Sweet Pea by saying that they won't have puppies because they're both female dogs, and you need a daddy dog and a mommy dog to make babies. My sister decides to tell her that they both had operations so that they wouldn't have any babies (more information than I would have given, but oh, well). Buddy Boy jumps in with "So they won't have any puppies, Sweet Pea. And speaking of Magma, did you know that it isn't called magma once it's out of the volcano. Then it's lava. And there are 3 different types of volcanoes. You'd know this if you watched my videos, dad. There are cinder cones, composite volcanoes, and shield volcanoes... ." He then went on for about 3 minutes straight talking about volcanoes, the Pacific "ring of fire" where many volcanoes are located, how you can't always tell that a volcano is really dormant, etc. before we finally cut him off.

My wife's aunt (84 years young) loved it. I think she was about to pee her pants. All of us found it fairly amusing. I admired the way Buddy Boy was able to spot a brief lull in the conversation, say something related, and steer the conversation (even if a bit crudely) to a topic he wanted to talk about. It's good to know he's getting our money's worth out of those social skills classes.

So all in all it was a great day. Sweet Pea had a good time, Buddy Boy was able to cope well for most of the party (though he and Sweet Pea did argue a bit about a doll she got with blond hair-he does like blonds, after all). And I didn't have to get into a long description of getting a dog spayed, and why, and answer questions about people getting spayed, etc.

And in checking on the net before I posted, I found out that geologists generally agree that there are 4 different types of volcanoes (how could Buddy Boy have forgotten Lava Domes?). I can't wait to tell him in the morning.

Joe is 211

It's Spring!

photo credits-my cell phone during my bike ride

What a great weekend it was in the middle of the US. Sure, there were some showers, but it was warm, occasionally sunny, and flowers and trees are blooming all over the place.

A great time for playing outdoors. We practiced throwing a baseball and long jumping (events that Buddy Boy's class will participate in in Special Olympics), and I got out on the bike myself, as well as with the kids.

When I went out with the kids, we did something new. Sweet Pea has outgrown the trailer I used to pull her in, so she has graduated to the "tag along" bike that hooks up to my seatpost. She says "I don't get enough air in the trailer". Of course what she really means is "Now that I've gotten a taste of riding out in the elements like this, like a big girl, you're never going to stuff me back in that trailer again!" Fortunately, Buddy Boy has gotten more confident on riding his two wheeler without the training wheels.



So we did a new thing yesterday. Instead of me throwing their two bikes in the car, takeing them to the park, then having them ride while I walked, we all rode to the park. I hooked the tag along bike to mine, and rode in the street pulling Sweet Pea behind me while Buddy Boy rode on the sidewalk the half mile to the park, where we rode on the trail that circles the park. This was significant, as Buddy Boy has never ridden on anything as narrow as the sidewalk before. I thought he was up to it, and he was the one who suggested we do it this way (I think he gets tired of waiting for me to catch up to them walking while they ride). Buddy Boy did pretty well. He veered off into the grass once on the way there, and bumped into two obstacles (a fence post and a telephone pole) on the way back.

Because it was the end of the ride (and we had also spent a good deal of free time on the playground equipment) Buddy Boy decompensated a bit when he bumped the obstacles. But he managed to get it back together in a few minutes, and we carried on back home.

It was great to get out and celebrate the start of a new season. Spring always feels so fresh and new, and the color that is dappled all over the place by nature is simply spectacular.

Happy Spring, everyone!

Joe is 210

Definitely Strange

One of the blogs that I like to visit periodically is by a pediatrician, who goes by the name of "Dr. Flea". Flea covers a lot of territory with his posts, and has had multiple posts that are supportive of the autism community and dismissive of the anti-vaccine crowd.

In perusing his blog recently, I noted a most unusual post. If ever one doubted that there are some serious nutjobs out there promoting the whole "mercury causes autism" thing, Dr. Rebecca Carley is proof of how "out there" some of these people can be. The photo above is from her web site.

Looking at her rambling, single spaced website, Carley goes on about how vaccines cause autism, cancer, autoimmune diseases, and shaken baby syndrome. She lists a phone number that you can call to get advice on how to reverse your disease with natural remedies. As she states:

...DR CARLEY HAS CLIENTS (BOTH PEOPLE AND PETS) ALL OVER THE WORLD, AND DOES NOT NEED TO SEE YOU IN PERSON! YOUR PROTOCOL TEACHING YOU HOW TO REVERSE YOUR AUTOIMMUNE DISEASE OR CANCER IS CREATED BASED ON YOUR INDIVIDUAL HISTORY. ...

It's great that you don't even have to have an office visit to get diagnosed and treated by this quack.

Fortunately for society, and as Flea notes, her license to practice medicine was revoked in 2004. A review of her website and hearing proceedings of the medical board reveal that she has had serious problems for years.

Looking at her CV, she completed 4 years (out of a usual 5) of a general surgery residency. This is usually a red flag that something was noticed to be wrong by her program. She was accepted into a Physical Medicine and Rehabilitation residency program, but washed out of that in two months. She subsequently practiced as an emergency room physician for a few years, and one year as a surgical house officer. The CV notes nothing for several years, then notes that she took multiple "Alternative Medicine" courses and seminars over 2 years. She subsequently claims to have started a new medical specialty,

VIDS (Vaccine Induced Diseas Syndromes, which includes all autoimmune diseases and cancers).

There was a psychiatric evaluation done as part of the proceedings which ended in her losing her license. The psychiatrist found Crawley to have:

... a delusional disorder with the presence of narcissistic and borderline personality traits. ...

He also testified:

...she has persecutions of persecution and grandiosity and that she believes that she is being persecuted because she is special. ...

And if that isn't enough:

... Dr. Labins also testified that the Respondent (Dr. Carley)believes that her husband sodomized their son as part of a satanic ritual because she does not vaccinate and because she cures children with autism. ...

So if you ever wondered who was out there promoting vaccines as being evil, and mercury as causing autism, here is one prime example.

Unfortunately it's usually not the out and out loonies that sucker people in, but some of their psychologically slightly better balanced followers who do the most damage.

Joe is 211

Pressure Applied to Autistics

photo credit- leappbaby

In a troubling incident in Tulsa, Oklahoma, a mother is accusing the school system of child abuse for "rolling up" her 7 year old autistic son when he was out of control. This incident is troubling for a couple of reasons. First, most likely this is an all too common scenario of untrained staff overreacting in an inappropriate manner.

...The mom told police the boy's face, neck and shoulders were covered with marks that appeared to be tiny broken blood vessels under his skin. We talked to the doctor who saw the boy that day. He said the injuries were likely from screaming while being in a tight restraint for a long time. ...

This description is consistent with the child having force applied to him (squeezed tightly) while he was "rolled up". It was fortunate that asphyxiation injury did not occur, which could have caused brain damage or death. Although the injuries in this case were certainly uncalled for and serious, they didn't warrant any medical attention, and the child has returned to school.

The parent may be absolutely correct in pursuing legal redress, but this case is also troubling in that stories like this only serve to paint all autistic kids as wild, violent, and out of control, which makes it easier to dehumanize them and leads to societal acceptance of further abuse.

I certainly sympathize with the mother. About 18 months ago I had a similar incident occur with Buddy Boy. Although he did not end up with petechiae, and it wasn't a part of his Positive Behavioral Support Plan, staff at the school wrapped him in a heavy rug while he was screaming at them that he didn't want to be wrapped up. Deep pressure only works if it's what the person is seeking to calm themself, not if they're just pissed off about some innane thing that you're doing to them.

But I hate to see these things made into police matters. I'm worried that the next time the child is perceived to be "out of control" that the school calls the police, who will treat the child as a criminal and taser them (or worse). I'd much rather the school district act responsibly and realize that this technique was absolutely wrong (and could have resulted in worse injury or death), apologize (I can dream), immediately have an IEP meeting to determine whether the Positive Behavioral Support Plan that was in place was followed, and whether that plan needs to be revised.

The school district has already lined up another parent of an autistic child to defend their practice. So even if the original child's Positive Behavioral Support Plan wasn't followed, and even if the district overstepped their bounds, this case is lost in the forum of public opinion, and the biggest losers are all autistics, who are further viewed as violent, out of control, subhuman creatures.

Joe is 211

Not Strange at All

I've finally gotten through reading Roy Richard Grinker's Unstrange Minds-Remapping the World of Autism. I had picked it up earlier this month, when I also got to meet Grinker at a book signing. He passed my "sniff test" when I met him, and I looked forward to reading the book.

Having read a few other reviews, I didn't think I would be disappointed, and I wasn't. The book is divided into two parts. The first part is basically a short history of autism in western society, mostly in North America. The second part explains how three other cultures (Korea, India, and Africa) view and treat autism, from an anthropologist's view (which Grinker is).

Like most people directly affected by autism, I'm fairly well versed about "all things autism", and I didn't think that I would learn very much from the first part of the book. But there were many things that I hadn't known that I found quite interesting. Things such as J. Langdon Down (for whom Down's syndrome is named) also described atypical patients who he thought had mental retardation that sound very like autistic patients back in 1887. Down was also the source of the comment that he thought these children were especially beautiful.

Grinker comes from a long line of psychiatrists, as well as being married to one, and is thus well versed on how psychiatry and autism have evolved. He weaves anecdotes and personal history of famous figures like Kanner into an intriguing description of how autism has always been with us, and how it has come to be recognized and systematized.

Probably the thing that draws most readers in is how Grinker uses examples from his own familiy's experience with autism into this book. Grinker's daughter, Isabel, now 16, came of age during the leading edge of increasing awareness of autism. Many of the battles that she and her family went thru, as well as many of her victories, will be very familiar to anyone whose life has been touched by autism.

As bad as society sometimes views autism in America, things are often much worse in other parts of the world. Grinker takes us on a world tour of select spots in the world where autistics are treated much worse that they are here. Places where autistics are shunned and locked in cages, and places where there is little understanding, much less assistance, for autistics. Amongst other feelings, it leaves one feeling lucky to have as much understanding and acceptance that we do have, though it is far from perfect.

So I heartily recommend Unstrange Minds, both to readers who are a part of the autism community, as well as those that aren't. It's a great read, and hard to put down. Grinker personalizes autism thru his daughter, Isabel, while being thoroughly educational as to how autism has evolved both in western society as well as elsewhere.

Joe is 211