Saturday, February 23, 2008

Beware the Rattlers...

Little League started today.

This simple statement could be taken as a token description of this morning's activities. Or, alternatively, it could be viewed in the much broader sense of marking a milestone in my sons' development.

That's right, Little League started today .... for both of my older sons.

You see, a few years ago the thought that my son could participate in an activity like this seemed pretty far-fetched. Jason had been diagnosed with "classic autism", and I quickly divested myself of the idea that his childhood development was going to follow predictable, typical paths.
Well, to make a long story short, Jason has exceeded many of the expectations that were placed on him in the short years immediately following his diagnosis, and at age 6 is now playing tee ball.

So here's how it all came about.

First, my Dad (my parents live very near to us for most of the year and are very good at keeping a finger on the pulse of the community and letting us know what opportunities are out there for the kids) caught wind that Little League sign-ups were coming soon and passed the info on to me.
I was hopeful but realistic about Jason's chances to play out the season on a team of his peers, but was heartened by the idea that Tyler (14 months younger) could be on the same team. Jason and Tyler resonate well together, despite their differences. My folks refer to their constant bickering as resembling two little old men who love each other dearly but get underneath each other's skin, which is a pretty good analogy. Think Odd Couple. Or Bill and Ted's Excellent Adventure.
So when I went to sign up last month, I just decided to talk honestly with the head organizer about Jason and his opportunity to participate. He initially recommended the Challenger League, which is specifically for players with disabilities, but I was enthusiastic that, especially with his brother on the same team, Jason would be up to the task. We reached an agreement to at least give it a try, and signed up.
Now, Jason is a member of the Rattlers. Though the Teal and White uniforms may not strike fear into the hearts of opponents, the kids sure are proud to wear them. The coach is a friend of ours who has known Jason for a few years and really understands and relates well to him. The coach's son is a friend of Jason's. My father, a former Little League coach himself, is an assistant coach, as am I. My wife is sharing duties as "Team Mom". My Mom will be official cheerleader and photographer. Tyler will be Jason's on-field supporter and taskmaster (until he gets distracted by a passing bumblebee). In all, I think we have a network of support that ensures the highest likelihood of success.
And, you know what? If it doesn't work out, that's OK. Furthermore, if Jason decides after some time of playing that baseball is not for him, that's OK, too. I'm certainly not one of those rabid sports parents who lives vicariously through my kids' athletic (or other categories of) prowess.
Dammit, I just want Jason to get a crack at this, at having the opportunity to bond with his teammates and experience the feeling of winning or losing a game in which he gave it his all.

The Rattlers!
We may swing the bat at the wrong object from time to time.
We may be more likely to catch a cold than the ball.
We may not throw very straight.
Or far.
Or in the right direction.
But we've got heart!
And we're here to play ball!
Go Rattlers!

Monday, February 18, 2008

AAP, Fact, and Opinion

This blog is titled "One Dad's Opinion", and my posts are full of all kinds of opinions on any number of topics. It is nice to live in a society where I am free to offer my opinions and to discuss them openly with those who agree and disagree with me.
Sometimes, though, opinions can easily be confused with facts. This is an area of potential problems for almost any topic, but can become particularly dangerous when discussing public health issues.
Take the autism/vaccine connection. This is an area where there are numerous known facts along with lots and lots of opinion. Regrettably, this is also an area where, in some areas of the popular media as well as the internet, opinions have come to be viewed by some as facts. This is a trend that is potentially dangerous to the public health and, as such, the Autism Hub members have joined together today to help counteract that trend.

Here are some facts:
There exists no scientific evidence showing that the administration of childhood vaccines cause autism.
There exist in excess of 20 studies that show there is no link between childhood vaccines and autism.
Today, there is an outbreak of measles - a highly communicable, vaccine-preventable disease that kills up to 3 of every 1,000 children who contract it in developed countries - in my area of the country. So far, 11 children have been diagnosed. All 11 children have NOT received the measles vaccination. For some, it is becuase they have not yet reached one year of age. For the rest, it is because their parents chose not to have their children vaccinated, possibly due to their fears about the vaccine/autism connection. Source.

Regardless of your view on the vaccine/autism connection constantly discussed in the media, please carefully consider these three facts as you read the following letter from Susan Stevens Martin of the American Academy of Ped Pediatrics. If, after reading the letter, you feel that you are a candidate to be a media contact on this issue, please leave your contact info in my comments section for this post or email me directly. Thank you for taking the time to consider helping with this very important public health issue. The AAP letter follows:


As part of our ongoing response to media stories regarding autism and
vaccines, the AAP communications department is compiling a list of
parents who support the AAP and are available for interviews. We are
looking for two types of parents who could serve as spokespersons:

Parents of children with autism spectrum disorders who support
immunization and who do not believe there is any link between their
child's vaccines and his or her autism.

Parents of children who suffered a vaccine-preventable illness. This
could be a parent who declined immunization, whose child became ill
before a vaccine was available, or whose child was ineligible for

We are asking for your help identifying parents who would be good
spokespersons. They do not need to be expert public speakers. They
just need to be open with their story and interested in speaking out
on the issue. We will contact candidates in advance to conduct
pre-interviews, to offer guidance on talking to reporters and to
obtain a signed waiver giving us permission to release their name.

If a parent were placed on our list, we would offer their name and
contact information to select media. We hope to build a list of
parents from a wide range of geographical areas.

As the Jenny McCarthy and "Eli Stone" stories illustrate, this issue
is likely to recur in the national and local media. The AAP is
committed to doing all we can to counter such erroneous reports with
factual information supported by scientific evidence and AAP

The anti-vaccine groups often have emotional family stories on their
side. The ability to offer a reporter an interview with a similarly
compelling parent who is sympathetic to the AAP's goals is a powerful
tool for our media relations program.

Please contact me if you have any questions or to suggest a parent to interview.

Thank you,

Susan Stevens Martin
Director, Division of Media Relations
American Academy of Pediatrics

Wednesday, February 13, 2008

A rose is a rose...

Valentine's Day is upon us and, for that reason, I'd like to talk about a relevant issue that has nothing to do with autism. I'd like to enlighten you about Valentine's Day and flowers.

You see, I'm a flower guy. I grew up in a flower business family. I have spent the last 14 years dealing with commercial cut-flower sales and distribution. I am not a retail florist - I have no floral design skills or talent - but I do have a strong working knowledge of the worldwide floral industry. Needless to say, Valentine's Day is a BIG DAY for our industry. It is also the day when one of the most negative consumer images of the floral industry is reinforced - that retail florists "price-gouge" their customers at Valentine's Day. I am here to tell you that they do not, and that any price increase for Valentine's Day is justified in numerous ways.

If I haven't lost you yet, let me explain. From the beginning.
Roses are the flower of Valentine's Day. This is not news to anyone. For those readers in North America, over 85% of our total consumption of cut flowers is produced in Colombia and Ecuador (with Colombia holding the lion's share). With roses, that percentage is even higher. If you are fortunate enough to receive roses for this Valentine's Day, you are most likely receiving Colombian-grown roses. For those readers who are located in Europe, your market is largely supplied by Kenya and Zimbabwe (even the current violence and political upheaval in Kenya, tragic as it may be, has not slowed down floral exports). For floral consumers in England, particularly customers of Tesco, you can even check your flowers for "Food miles" (a marketing campaign that seems to have run its course) to see that many of your flowers have travelled a very, very long way before arriving on your kitchen table.
Now, it is easy to understand that roses, since they are a plant that is put in the ground (or hydroponic growing medium, as it were) to stay for several years, are not intentionally over-produced on a 12-month basis simply so that there are sufficient blooms available for Valentine's Day. In other words, you don't plant for the holiday, harvest the crop, the plant something else in the same soil. Roses plants are a multi-year investment that require 24/7/365 care to result in a livable profit.
This means that rose growers must employ special techniques for 'force' a crop for the holiday harvest. The main method to achieve this is known as 'pinching'. When a grower pinches his/her crop, he removes a very young flower bud that would otherwise be ready for harvest in the next couple of weeks. The remaining stem then 'breaks', meaning it splits into 2 stems. About 6-8 weeks later, each stem 'break' will produce a saleable bud, or flower. The economic impact of this pinch is tremendous to the grower. They essentially sacrifice an entire harvest is an effort to double a future harvest. This is the first mechanism that results in a higher price at the retail florist in Des Moines or Seattle or Bath or Zurich.
The next issue that arises is transportation. Imagine that you own a commercial cargo airline that flies throughout the Americas. One of your main 'lanes' is the one that runs fresh flowers (and produce) from Bogota, Colombia to Miami, Florida, USA. (Miami is the port of entry for the vast majority of flowers coming from South America). You typically fly in one planeload per day, and your sales team has developed contracts to return items to Colombia such as clothing, or paper products, or computer monitors, or other items. Your established rates are reflective of your ability to generate revenue both ways, right? Now, it is the lead-in to Valentine's Day. Your regular, daily clients - the flower growers in Colombia and the wholesalers/distributors in Miami and throughout the U.S., are relying on you to push through over 10 times your typical volume. You find a way to add more lift to your flight lane into Miami, but the planes must fly back empty. Therefore, you must capture the cost of a round trip in just one direction. This is the second mechanism that causes higher prices for the holiday.
Now, picture the need for flowers to be distributed from Miami to all points in the U.S. so they can reach their retail endpoints. There are a variety of methods available to accomplish this, with the Big 3 being: Refrigerated trucks, commercial passenger airlines, and express delivery services such as FedEx. In each case, these transporters face the same problems that the airline from Colombia to Miami faced. All in light of fuel costs which are dramatically higher than they were just a few short years ago.
All of these factors impact the per-stem costs of flowers - most particularly roses - by the time the retail florist gets their hands on them. Now that they do have their roses, they have their own hurdles to jump. If a retail florist typically has, let's say, 5 full-time employees on staff, then that is the number they have to work with (plus temps) to accomplish 5-10 times the normal workload. They need to receive the product, process the flowers (cut stems, place in clean water with floral preservative, clean the stems and strip the guard petals, de-thorn some varieties, and store in refrigeration), arrange the flowers (to custom specifications in many cases), and deliver the product on many orders. All of this is done with most employees on overtime or, sometimes, even double-time wages, with rented delivery vehicles, with rented refrigerated trailers for additional storage space, and with any number of other issues forcing costs up and up and up.

These are some of the reasons why roses cost more at Valentine's Day.

And, if you are like me, it doesn't matter at all. If you are like me, the special person in your life is well worth the money spent.
Happy Valentine's Day to my lovely wife!

Tuesday, February 12, 2008

Generation Rescue: A Timeline

Today, Generation Rescue paid for another full-page ad in a national publication. In this case, it was USA Today.
This occasion prompted me to spend a few moments reflecting on the meandering path that GR has taken since its inception in 2005. To help the new reader digest some of the gaffes and self-contradictions that litter the snail-trail left by GR, I have assembled a timeline of events. For those familiar with the events described here, please feel free to add your own points to the timeline.

February 2005 J.B. Handley appears on a local NBC show and declares that
"There is no such thing as autism. Autism is a misdiagnosis for mercury poisoning."
This is the moment when J.B.'s public reputation became directly tied to the outcome of chelation therapy performed on his son. A big burden for any son, to be sure. Also, imagine the shock felt by thousands upon thousands of autistic adults all over the world to find out that they simply had mercury poisoning!

June 2005 The Handleys launch the initial version of the Generation Rescue website. Thanks to the Wayback Machine, we can see how the site was worded at that time. Specifically:

"Generation Rescue believes that childhood neurological disorders such as autism, Asperger's, ADHD/ADD, speech delay, sensory integration disorder, and many other developmental delays are all misdiagnoses for mercury poisoning." (emphasis mine)

The website also prominently features a quote from Dr. Rashid Buttar. Yes, that Rashid Buttar.

April 2007 The Q1 2007 CDDS numbers are released (brief analysis here), and the reported caseload of autistic people in California continued to rise. This was yet another devastating blow to the mercury/autism hypothesis. When considered in the additional light of the incredible number of advances made in understanding the genetic basis of autism, how could one continue to proclaim this?:
"There is no evidence to suggest that autism is genetic. No autism gene has ever been found and the search will be endless – how can you have a gene for a mythical condition? Autism is mercury poisoning." - J.B. Handley

April 2007 The "new" Generation Rescue Website is launched with great fanfare! There is plenty of excited buzz in places like the Evidence of Harm Yahoo! Group and the household of Katie Wright. Yes, that Katie Wright. But ... wait! Where is the "autism is a misdiagnosis for mercury poisoning" statement? Its missing. Instead, they changed their story!
Now, apparently autism is not a misdiagnosis for mercury poisoning. Instead, :

"The cause of this epidemic of NDs is extremely controversial. We believe the primary causes include the tripling of vaccines given to children in the last 15 years (mercury, aluminum and live viruses); maternal toxic load and prenatal vaccines; heavy metals like mercury in our air, water, and food; and the overuse of antibiotics."
February 2008 J.B. Handley, in his typical gentlemanly style, tells respected autism researcher Nancy Minshew "Tough shit" in response to her request that he keep an email correspondence between her and a parent of an autistic child private. The email in question was not damning in any way - I guess Dr. Minshew is simply used to a bit more decorum than is practiced by people like J.B.

Februrary 2008 Generation Rescue decides to throw good money after bad, and pulls another full page ad in USA Today. Of course, their intention must be to continue the message established by the re-work of their website in April 2007, right? Or, after numerous new studies being published that further discount vaccines in general or thimerosal in particular over the last few months, did they change the message again? Yes, they did. This time:

"Mercury. Aluminum. Formaldehyde. Ether. Antifreeze."
Wow. Combined with their earlier change of causation theory, one must now consider thimerosal, aluminum, formaldehyde, ether, antifreeze, tripling of vaccines, live viruses, prenatal vaccines, maternal toxic load, mercury in air, water, food, and overuse of antibiotics. That's quite a list! And, coupled with the staunch position that genetics have absolutely no role in autism, I think JB and GR have their work cut out for them in figuring out just how all of these myriad factors (13 at last count) interplay in causing autism!

I also think it must be mentioned that in this ad, whether intentional or not, GR indirectly asks the reader to discount the credibility of the CDC and AMA, while simultaneously ceding credibility to Jenny McCarthy and Jim Carrey. Oh ... my ... gosh.

Call me crazy, but I'm not thinking that Generation Rescue is a credible resource for knowledge about autism causation. Oh wait, I changed my mind about that. Oh, but I just changed it again. And again.............. ad nauseum.

This is just One Dad's Opinion.
For another opinion, Kristina at Autism Vox.

Monday, February 11, 2008

Snippets 2.0

This is the second installment of Snippets.

Two posts on the Autism Hub today reminded me of the topic of speech, of the sometimes fleeting nature of speech and autism. My son, though definitely a late-bloomer in the speech category, has really come a long way in his ability to talk. Not only is he overcoming some of the mechanical hurdles to speech, but also he is perpetually becoming more comfortable with using speech to interact in typical circumstances. His little brother, by comparison, is light-years beyond him in speech development despite being 14 months younger. But in all, Jason is quite pleased with his ability to use his words to interact with those of us who share his space.

As in the first post, I think when having some fun talking about 'Snippets' of speech, it is important to consider other perspectives on the speech issue as it relates to autistic people. Here, then, are two very interesting posts that hit the Autism Hub today on the very same topic.

Adam and Estee

Here, then, are some snippets heard recently around the D household:

Licensing Issues
We have a wonderful puppy in our house. His name is Marley. One must only glance at some pictures of Marley to know that he is the cutest puppy the world has ever known.
Those pictures were taken in July, when Marley was about 4 months old. Now, Marley is close to 11 months old. Still a puppy, right? Yes, if you consider 90 pound dogs to be puppies. And still growing...
Back on subject, Jason has a thing about Marley. In Jason's opinion, Marley is good from afar, but far from good. Its a love/hate thing. Sometimes Jason can have fun with him and sometimes you'll even catch them laying together while Jason reads a book. But most of the time the big puppy is a bit too rambunctious for Jason. When this happens, Jason grabs the "short leash" (a 18" rope attached to Marley's collar for training purposes) and leads Marley to the nearest adult. The dog, knowing what the boy is attempting, fights him all the way which kind of pisses Jason off. So the other day, Jason led Marley over to me and tried to put the short-leash in my hand. "Take him!", Jason says.
I told him that, "No, you need to learn to play nicely with Marley and I can't always take Marley away when you are not playing well together. You need to learn to play together! Marley is our dog, not just my dog. He is your responsibility too! Try some of the commands we've taught you." Jason, looking rather peeved with me, dropped down to his knees. He grabbed Marley's collar in his hand and fiddled for the tag, focusing as best he could while our elephantine puppy twisted and slobbered and danced in place and I watched him wondering what on earth he was trying to accomplish. Once he had successfully grabbed the tag, he turned it to the other side and read the words, "Steve D...... the license says you. Your license. Your dog!" So, I guess Marley is my dog now.

Life in a Fishbowl
I have occasionally mentioned how great the various therapists have been that have worked with Jason over the last few years. Jason's current helper is no exception, and even took the time to see the Autism Hub presentation last month.
One of Jason's former helpers, who remains, like the others, a good friend of our family, gave Jason's little brother a fish for his birthday (is there a pet theme running through this post?) Tony is a bright blue Betta fish. Actually, he is staring at me at this exact moment.
It is Tyler's responsibility to feed Tony and provide whatever TLC is necessary to sustain the emotional needs of a fish (not much, to be sure).
One night after all other D clan members were asleep, Jason and I were still hanging out. I believe this was one rare night that we forgot to give Jason his melatonin (see recent study), so he was going to be lively for a while despite bedtime having come and gone a while before. So while I am catching up on some reading, he is busy cutting some paper with his safety scissors. He eventually comes to me with a cutout. He holds it out to me, as if to say "Behold what I have created!" I think to myself, "Wow, what a remarkably amorphous blob of paper. I wonder what it is?" Jason wastes no time in telling me that it is ........... Tony the fish!
"Great job!" I say. "That's one spectacular rendition of Tony. Did you show it to him?" So Jason trots off, presumably expecting to show Tony his paper counterpart. Next thing I know, I hear water running in the other room. Being a parent of three young'uns, I am attuned to the sound of unexpectedly running water. So I drop my book and dash in the other room.
Jason has grabbed a bowl, placed Tony inside, and filled the bowl with water. That's pretty cool! He made a fishbowl! So he then asks me for some fish food. I declined, saying that the food was for the other Tony. No, Jason, indicated by grabbing the scissors and cutting in short bursts. I had it all wrong, his actions told me. As his little clips resulted in small, confetti-like paper bits accumulating on the counter I realized his plan. Paper fish eat paper food. He was making fish food!
When my wife found Tony's pulpy remains in his watery grave the next morning, she must have been wondering what the he** we do after 10:00 at night.

But that's not the only unusual thing my wife ever wakes up to. Sometimes Jason has things all planned out...
Last week, like any other morning, she came downstairs. She entered the kitchen and immediately noticed a note on the counter. "Find me in the Family Room" it said in shaky D'Nealian script. Hmmmm.
Entering the family room now, her every sense was honed in to finding the mysterious hint-dropper. There it was! On the table, another cryptic note.
"Find me under the table".
Well, with a clue so enigmatic, a mystery so deep and impenetrable, one must wonder how my wife figured out where to look next! Until ... a giggle burst out from under the table. Success! The little leprechaun was found, and today's mystery was solved. All in a day's work for - Mama D!

Thursday, February 7, 2008

More on ABA

I sat down to write a post a little while ago and ended up going in a different direction than originally intended. Now I'm going to try to get back on track.

ABA is among the least 'contested' treatments for autism. I think this is because it is viewed as being largely benign by most people. This has been my view as well, though there are certainly some compelling criticisms of ABA.

And I guess that's where I am going with this discussion. I want to show you in this post some of the 'good' and then briefly introduce some of the 'bad' of ABA (to be continued at another time) and invite you to comment/decide/consider for yourself where you stand on this issue. If you are the parent of a recently diagnosed autistic child, I'm guessing you may feel differently about ABA than an autistic adult. If you adhere to the idea that environmental toxins played a major role in your or your loved one's autism (I don't), you are less likely to lend credence to this approach as it does not involve detoxification. If you are someone who focuses on scientific method and ethical criticisms (I am, though I'm a layperson in both cases), I suspect you may have a different view than someone who feels the 'early intervention' window will slam shut in a matter of months. You catch my drift, I assume, that ABA undergoes a lot of scrutiny and has lots of adherents and detractors.

I recently had the pleasure of attending a presentation by Dr. Gary LaVigna of IABA on the topic of ABA. Let me continue the philospohical dichotomy I have settled on in this post by saying that Dr. LaVigna said many things that I felt strongly positive about, but the overall thrust of his presentation left me with an uneasy feeling that was not easy to quantify. First I'll relate the good stuff:

Let me begin by saying that Dr. LaVigna is not primarily focused on 'early intervention' ABA. His agency, IABA, according to the content of his presentations, has a focus on autistic young adults and adults who are experiencing very serious problems in any number of areas. These include long-term aggressive/violent behaviors and very challenging self-injurious behaviors. Some of Dr. LaVigna's clients are the types that some people, such as Harold Doherty, would claim have no future outside of an institution. An excerpt from their website says : "It is the philosophy of [IABA] that a person with a developmental disability is entitled to live his or her life with the full dignity of a developing human being, as a self-reliant and productive member of society."

This leads me to the "good" side of ABA. I am familiar with many of the ethical and academic critiques of the ABA method, and I agree at least in part with many, if not all, of them. But there is an aspect of ABA which, in my view, is not directly in the line of fire of that criticism. I am referring to the following (loosely paraphrased) 5 goals of Dr. LaVigna's approach to behavioral supports for autistic individuals:
  1. Community presence and participation that are appropriate and valued by society.
  2. Autonomy and self-determination through the exercise of increasingly informed choice.
  3. Continuous involvement in the ongoing process of becoming independent.
  4. Increasing independence and productivity, to the point of economic self-sufficiency.
  5. The opportunity to develop a full range of social relationships and friendships.
(Note: These 5 items are excerpted from an otherwise-established set of ABA goals/principles which Dr. LaVigna mentioned, but I failed to write down. I am hoping someone with a more encyclopedic knowledge {Alyric? Michelle? Jypsy? Amanda?} of the concept may comment and advise me of a more direct source of this information.)
Now, it is important to grasp that this goal set is certainly not exclusive to ABA as an approach. This set of 5 goals, however, could be applied to virtually any technique and would remain admirable regardless, in my opinion. This set of goals seems to me to be a good beacon of orientation for working towards the happiness and well-being of autistic adults. Notice the lack of emphasis on "reducing/eliminating autistic behaviors" or causing the client to strive to "become indistinguishable from his/her peers" and using that as a measure of success. None of those concepts are discussed or referred to . Instead, a sense of community, a sense of responsibility, the building of meaningful relationships, and true self-determination are discussed. I think that is highly appropriate. And, again, if you refer to my last post on ABA, I believe that a well-intentioned person or group of people who have appropriate goals in mind and value the autistic person they spend time with can have a positive impact in numerous ways that may not be measurable in terms that translate well to research studies (the reverse, unfortunately, is sadly also true).
Here is the other thing about Dr. LaVigna's approach that I found to be good. And you'll have to forgive me for giving the Cliff Notes version, as I spent more time listening than taking notes and therefore can't easily reconstruct precisely what he was saying. But this has to do with, again, self-determination. I think self-determination is a big issue in ABA. My son is only 6 years old, and therefore of course will not be granted nearly as much freedom of choice as one would grant an adult. This is true for virtually any teaching approach for any population. But I do recognize that as a person grows and develops, more opportunities must be afforded that person to self-determine. The squelching of this basic human right is a travesty and occurs far too frequently amongst autistic people (particularly in institutional settings). There are those (again, like Harold Doherty) who believe that institutions are very appropriate for many people, for those who are simply 'beyond help'. I disagree, and therefore applaud Dr. LaVigna's focus on this issue. Briefly, Dr. LaVigna 'indexes' his clients' activities on a matrix. The matrix is categorized into at-home and community settings, with further divisions to specify functional (such as errands) vs. social situations. As a measurement of success (in other words, 'success' cannot be achieved without...), the client must gradually increase his/her involvement in choosing/avoiding/specifying activities (I don't like that word, but have no other to use in its place) to the point where they are at 100% self-determination.
And, really, this approach is one embodiment of ABA. Dr. LaVigna tries to understand what the individual's obstacles to success are (functional behavioral analysis) and then tries to implement (Apply) a plan to achieve the goal of helping the person overcome those obstacles.
I may seem to someone reading this post to be a huge fan of Dr. LaVigna. That's not necessarily the case at all. I am extracting some of the things he talked about and using them as a theoretical model for how, in my opinion, ABA can be used as a method to positively impact the lives of autistic people. Some things he described really resonated with me as being appropriate and logical and of great potential benefit.
But my comfort level with anyone's application of ABA techniques or principles will always be tempered by some of the serious, valid problems with the approach. Problems such as;
Are the goals always met and, if not, what then? Is the functional behavioral analysis likely to be correct? Is 'non-aversive' really not? Will Discrete Trial Teaching create robotic little autistic people? Is the whole thing a colossal waste of time? What do research results tell us? These are some of the potential negatives, and deserve as much attention as the aspects that I perceive as being good.
In my next post on ABA, I will get into some of those issues.

I'd also like to recommend some further reading for those who are interested.
First, a recent ( as in yesterday) and excellent commentary from Sharon on ABA in Ireland.
For an in-depth look at ethics and ABA, please read Michelle Dawson's The Misbehaviour of Behaviourists.
And this excellent essay by Phil Schwarz.

Tuesday, February 5, 2008

JB: It's you

It is typically my approach to stay out of some of the 'fights' in the autism community. Every now and then I come across something that really irks me. Sometimes, as in today's case, I can't specifically identify what it is about what I've read or heard that is so irritating.
Allow me to refer you to the most recent post by J.B. Handley over at Age of Autism. In it, J.B. compares his own sanity (figuratively) to Nancy Minshew, Ph.D., while also comparing their scientific acumen.

J.B. begins by offering up the fact that he has read an entire presentation by Dr. Minshew - over 100 pages! Of course, if one were to look at the document he is referring to, one would notice that the first 68 pages are Powerpoint slides. Way to go, J.B.! That's some serious reading!

J.B. goes on to say, "You see, after reading many of the things you have written and said, I find myself in a real funk, a state of angst and confusion." Well, that should be a familiar feeling for Mr. Handley in light of the colossal error he made in telling every news and print media outlet a few years ago that "There is no such thing as Autism. Autism is a misidagnosis for Mercury poisoning!" He even took out a full-page newspaper ad to tout this position. So how did he resolve that last bout of "angst and confusion" when it became painfully obvious to him that he was wrong and that he had made an utter jackass out of himself? When he reached a point where not even his own cognitive dissonance could prevent him from seeing the errors in his beliefs? Easy, he changed his story and never looked back.

J.B. goes on to say, "I had never heard of you until last week when, for reasons I can’t pretend to understand, your name appeared in a number of articles discussing Eli Stone and the relationship between vaccines and autism." And this is most interesting since just a few sentences prior to this line, he said, "My son was diagnosed with autism about 3 years ago. Since that time, I have devoted myself to reading every printed page of science I have been able to find on autism. I’ve interviewed or seen dozens of different “experts” (as you are often referred to in the press), and my wife and I have worked diligently to do everything we can to help our son."
Here, I think I can be of some help to J.B. You see, anyone can quickly hop on over to PubMed and punch in a quick search that includes "Minshew" and "Autism". Voila! 83 entries appear. That's a lot of entries! Looks like they range from topics such as sensorimotor control to adaptive behavior. Now, for the purpose of contrast, let's type in "Handley" and "Autism". One result! Oh, wait. That's a different Handley. Oh, well.

So, let me get this straight - J.B. Handley has read every printed page of science he has been able to find on autism, but has never used PubMed at all (much less had anything published there)? I'm stunned! So, if that's the case, then he has completely missed (let's see, I'm just typing in "autism" now) 11,734 entries into the scientific record! I think we've estabished that J.B. Handley has a few gaps in his knowledge on the subject of autism!

This leads an inquiring mind to ask, why would an illustrious Autism Expert such as J.B. Handley simply 'overlook' so much scientific information on such an important topic? Well, later in his post he conveniently answers that question for us: "I really didn’t pay much attention to these press mentions of you last week because I’ve grown pretty insensitive to the propaganda effort (as I perceive it) continually underway to defend the national immunization program. " Ah, there we have it. Anything that does not jibe with his worldview that the vaccination program is actually a grand conspiracy is to be ignored. Boy, that certainly limits your options when it comes to information sources. No wonder he is not using PubMed - it is a government-run database. Forget also the CDC, the FDA, anything related to the government or any pharmaceutical company. None of it is to be trusted. Because J.B. knows the truth, and is just waiting for the rest of us to catch up.

Next, of course, J.B. goes through some of the typical talking points one might expect to hear from the autism-is-mercury-poisoining-camp (Can we still call it that? Or should we call it "some-undetermined-toxic-load-is-autism-but-don't-be-offended-that-I-am-calling-you-or-your-kid-toxic-camp".) They go something like "experts'" ... "vaccines" ... "Thimerosal" ... "banned" ... "flu shot" ... "crazy" ... you get the picture.

J.B., though, always the gentleman, took the time to inform Dr. Minshew that he will be using her email - an email exchanged with a parent who had requested help of Dr. Minshew and was subsequently turned over to J.B. for the purpose of using it to attack her - the day prior to posting this fine article. When she responded explaining that her email was for private use, his gentlemanly response was, and I quote:

From: J.B. Handley Sent: Monday, February 04, 2008 11:54 AMTo: Nancy
MinshewSubject: Re: Nancy & Me: Who's crazy

Says who?
And, tough shit.

J.B. Handley

Just in case you were wondering why I am taking the time to criticize J.B. Handley's post, that last line might convince you. Unless, of course you are one of J.B.'s adulating fan, who left comments to the post that say things like:
-"OK, I just have to say that I almost shot some of the water I was drinking out of my nose laughing when I read JB's final email..."
-"You Go, JB....I have a visual of a very angry Dr. Minshew with smoke coming out of her nose and ears after reading your email. "
-"I'm in awe of your ability to combine common sense with science." That's right - AWE!
-"JB, WAY TO GO!!! Great letter! One of my favorite parts was in the newspaper article where it was stated that Dr. Minshew was taking off her gloves. HA! She doesn't realize who she just climbed into the ring with, now does she?"

What a lovely group of people, those AOA'ers!

So, to answer J.B.'s question -indeed the tongue-in-cheek (which comes across as sneering wise-ass) topic of the post, "This is my world, Dr. Minshew, it seems clear as day. It’s so different from yours, I really, really need to know: which one of us is crazy?"

It's you, J.B. It's you.

Saturday, February 2, 2008

How to Spoil a Good Lunch

This is a story of my first Autism Conference.

This conference took place in Pasadena in summer of 2006. The plan was for me to go and for my wife to stay home with the boys (who were then 4 and 3, respectively). Since Pasadena is a solid 2.5 hours drive away, I decided to get a hotel room for a night (it was a 2-day conference). That way I could spend the in-between evening perusing and disseminating any info I would glean from the various sessions instead of fighting Southern California traffic.

I went with the highest of hopes. I would see Temple Grandin speak! Carol Gray, the creator of Social Stories, would be there! All kinds of service providers would set up shop! And, best of all, there was to be a "Dad's Luncheon" the second day. Dad's only - a chance to mix it up with people experiencing and adjusting to some of the same things I was. Perhaps I could have the satisfaction of either receiving or giving some incredibly useful piece of advice or wisdom. I was thrilled!

Temple was very interesting and informative, as I'm sure she always is. I was surprised and a bit unsettled at her endorsement of anti-depressants and anti-anxiety meds as being essential to her well-being, but who was I to judge? I was wondering if these things were in Jason's future as well. Carol Gray was marvellous. Other presenters were not so impressive as I had hoped. I recall Doreen Granpeesheh speaking, and getting a feeling of 'detachment' from her. I'm not sure how else to describe it. It was as if she was talking about automobile repair or something. The conference was hosted by Jim Adams (who I now am familiar with due to his involvement in a seemingly failed chelation study in Arizona.) I had no idea that what I had attended (I was unaware of the divisions in the autism community at the time) was basically a cure-oriented, biomedical conference.

A turning point in my approach to parenting happened during that conference, and it happened during the Dad's Luncheon - the thing I most looked forward to attending.
We all settled in for lunch, probably about 30-35 of us. We were given a cold box-lunch. The usual - a soggy ham sandwich, a small bag of chips, an apple, a cookie. We were sitting at various round tables dispersed through a medium sized room. As some stilted, uncomfortable small talk took place, we all munched away at our little lunches. After a short while, 2 guys stood up and introduced themselves. They apparently travelled with this conference organization regularly and had these Dad Luncheons at each stop. As I soon came to realize, they seemed to revel in relating to all of us just exactly how difficult their lives had been made by their autistic children.
And, oh how their lives were difficult! They were having trouble making ends meet. One had to quit his job. They didn't have any of their old friends anymore. Their sex lives were non-existent. Listening to them, one would think that they should be martyred for their long-suffering existence as parents of autsitic kids. And the things they'd tried and done to cure the autism! The sacrifices they'd made! I was sitting there, just incredibly disappointed. And I felt embarrassed for them, as I assumed the other 'Dads' in the room were feeling just like I was that the Dads' Luncheon was actually a two-man pity roadshow.
Then the bomb dropped (though only two of us knew it had happened). One of the talkers was asking questions of the group, trying to get people to interact and respond. It was mostly falling short, until one question came up.
"How many of you guys have ever thought about killing yourself? Or about killing your kids, just to put a stop to all of it?"
All but two hands went up in the room. Me and the guy sitting across from me - a dentist or doctor as I recall - were looking around, absolutely agape. Our eyes met, and we shared a moment of stunned, shared recognition of our aloneness in the room.
The Q&A then continued on, and I don't think anyone noticed what had happened except for the two of us. Here's guessing that, somewhere out there tonight, that guy and his family, I and my family, are faring much, much better than the roomful of Dads who harbored thoughts of suicide and homicide.

Immediately afterward, I remember calling my wife and telling her what had happened. She, too, was amazed. I mean where else is this an acceptable thought? Imagine that same question being asked of the Dads at a little league organizational meeting. Of the Moms at PTA. At Cub Scouts. At Sunday School. Anywhere else. It boggles the mind. And lest one think that this mentality does not, in many cases, play itself out to the worst case scenario, please take a moment to browse this ongoing journal by Joel Smith. In it, Joel provides updates of news reports of abuse and murder of autistic people. Karen McCarron will soon be sentenced for the murder of her daughter Katie - will Karen receive a full sentence, or will she be sentenced lightly because, after all, she was dealing with the stress of trying to raise an autistic child? If she is sentenced lightly, it is the mentality apparent in that room on that day that we have to thank for the travesty.

I think any consideration I give to the more extreme and belligerent elements of the Biomed community (because that's who these people were) and those who provide them the products and services they crave, has been tainted since that day. It was a glimpse inside the acceptable mentality of those who have a parenting sense of entitlement. Those who simply cannot accept that they have brought a child into the world that does not fit their preconceived notions of what is 'right' and what is 'acceptable', and their child must be fixed.

I've been waiting a few years to get that one off my chest. My rant is over now.