Scientists begin to trace autism's genetic roots

KRT Wire | 08/25/2005 | Scientists begin to trace autism's genetic roots

I'm glad to see that someone is officially investigating the idea that autism might have different variations with different causes. I'm not talking about a different place along the spectrum, but the difference between what I would call "genetic autism" and "environmental autism". I believe that it is perfectly credible that the original disorder known as autism is hereditary/genetic and that a different disorder with very similar symptoms as autism has been created by environmental factors (i.e. thimerosal and mercury). Without question, adding certain personality traits that my wife and I posses will equal several of the symptoms seen in my daughter. And of course, there is no way that a genetic disorder can become an epidemic in the short time that autism rates have increased so rapidly, so it only makes sense that there is an outside (environmental) influence as well. While a broader definition and better diagnosis has added to the increase as well, it certainly cannot explain the explosion in numbers; otherwise where are all the autistic young adults? It is an absolute impossibility that there are hundreds of thousands of undiagnosed 20 and 30 year-old autistics out there in the world that are walking around unnoticed.

Newport News-Times: Parent training on 'individual education plans' offered

Newport News-Times: Parent training on 'individual education plans' offered

With another school year right around the corner, I thought this was a great article for the day. While the idea is not new, it is still very valuable. It would be my guess that most parents are not aware of their rights in an IEP meeting, even if they have read their little blue book. All schools and school districts are not the same, but it has been our experience that the staffers involved typically seem to appreciate our involvement and understanding of the process. There is no question when it comes to this "knowledge is power".

Parents Encouraging Parents (PEP) is usually an excellent resource for IEP workshops. If you aren't aware of this organization or if you would like to find a local chapter, a web search reveals a pretty lengthy list.

Parents Encouraging Parents

Autism Society of America Launches New Branding Effort

Autism Society of America Launches New Branding Effort

We love the ASA, don't get us wrong. But, man... business is business, isn't it? Exactly how much of our charitable contributions went to the "re-branding" effort? ASA was one of our first beneficiaries for the funds raised with the IMAGINE™ Wristband. We received a great response from them in December of 2004 when we informed them of the news. Then we never heard from them again... However, we do have the cancelled checks, so I suppose that is some form of acknowledgement. For me the biggest slap in the face came four months later when they launched their own "official ASA" autism wristband. It seems that overcoming the competitive corporate nature of executives is not to be expected even for charitable organizations.

Lee Grossman said it himself: "Our branding initiative seeks to take ASA to a new, more competitive level both inside and outside the autism community by raising public consciousness about autism." That's terrific Lee, but exactly who are you competing against? Cure Autism Now? NAAR? "Our goal was to create a new identity that truly reflected the power and presence the Autism Society of America deserves," says the Chief Brand Strategist from Fishtank Brand Advertising, the company responsible for the new campaign. A new identity? What exactly are we selling here? Tuna Fish?

Its events like this that increase my cynicism. I don't like to be a cynic, but how can you now be in times like this? And really... "The Voice of Autism" - that is a bit presumptuous isn't it? And of course, the part I love the most (being a computer guy); "The organization's site is now easier to navigate and full of new interactive components, making it more user-friendly." Really? Have you been there? The main page is almost completely barren. There used to be alot of good information there, and an easy way to find am ASA chapter in your area. Now it looks more like a focus on "The ASA Store" and subscribing to "The Advocate".

The ASA does a lot of good things. They have a tremendous grass roots membership, with local chapters all aorund the country. But I have to wonder whats really going on at the top of the organization. Care to increase exposure? Perhaps your first step should be wresting autismsociey.org and autismsociety.com away from the cybersquatters who own them. Haven't looked into that? One has an address of General Delivery in Grand Caman, the other is veiled by a privacy service. Do you realize that these are nothing but pay-per-click "parked" domains? In other words, the links you see on these sites are put there by an advertising program, and the owner of the link pays the owner of the site everytime someone clicks it. So not only is ASA missing people who are trying to go to their site, but if the person clicks on the ASA link from one of these pages, ASA actually has to pay for it!

Is it too much to ask to try and get our priorities straight?

The Autism Society of America

The Seattle Times: Health: Thimerosal, autism not now linked

The Seattle Times: Health: Thimerosal, autism not now linked

I happened upon this article today as I was looking for something to write about. It prompted me to respond directly to it's author, which I will include for today's entry.

Dear Mr. King,

Exactly how much research went in to your two paragraphs declaring that they are now "not linked"? Was the single quote from a director at the CDC your only source of information? Did you bother to check out the IOM report that Dr. Gerberding is referrring to? Did you even read the 3 page brief? If you had, you would have realized that the study was done done to determine a link between thimerosal and autism. The study was done to determine a link between the MMR vaccine and autism. It's easy for the CDC to make a blanket statement such as this, while they pass off their own test data to HMO's and claim that the data is now private.
I would urge you to review the brief if you have not already at http://www.iom.edu/Object.File/Master/4/132/0.pdf

"The evidence favors rejection of a causal relationship at the population level between MMR vaccine and autistic spectrum disorders," the committee concludes in its report. "A consistent body of epidemiological evidence shows no association at a population level between MMR and ASD,"
Read this passage carefully, and notice that "population level" is used twice. Don't you suppose, sir that if there was a causal relationship with the general population that the rates of autism might be 1 in 10 as opposed to 1 in 166?

And going directly against the title of your story:

"Though the MMR-autism question might appear to be resolved, science is always a work in progress; a conclusion is only as good as the methods of the analysis. The epidemiological studies, traditional public health tools used to examine the risk factors for a disease on a population level, were at a disadvantage here because there is little variation in expo-sure to MMR since children in most developed countries are vaccinated similarly. "

You do a grave disservice to your readers and the general public by attempting to create absolutes from ambiguities. I would hope that you would research this issue a little further and address it in your column again.
Thank-you.

Dwight Clark
President
JAX Management, Inc.
"Furthering the Cause of Autism Awareness"

The managing editor of seattletimes.com was sent a carbon copy. Please feel free to send your comments to them as well at: Warren King or Stanley Farrar

CSU Stanislaus Professors Publish Revealing Report On Autism Treatment

Newsline : CSU Stanislaus News

I should start by saying that I'm not a big fan of ABA. I'm sure that in some instances it is the best course, by my feeling is that is somewhat radical and I'm not convinced that the long-term effect isn't actually damaging.

The most disturbing part of this report to me is that the two doctors who wrote this report are both co-founders of Therapeutic Pathways and The Kendall School, both of which push ABA as their primary treatment. Having seen personally the effect of "eclectic" treatments on my own child, I think that it is somewhat irresponsible to dismiss it as "ineffective".

Intensive ABA of 25-40 hours per week 1:1 versus intensive "eclectic" therapy 30 hours per week in a classroom (1:2 or 1:3) is more effective. Wow! Thanks for the insight. Perhaps this study should have been the difference made between 1:1 treatment and 1:2 or 1:3... It seems a bit self-evident to me. I have an idea, let's compare apples to lemons and decide which is sweeter. What do you suppose the outcome will be?

"The popular notion that virtually any intervention can produce meaningful benefits for children with autism if it is provided intensively has not been confirmed by two controlled studies that addressed that hypothesis." Did I miss something here? Is it really the popular notion that any intervention can produce benefits? I have not met many parents of autistic children saying "Anything is better than nothing..."

And I'm not here trying to say that ABA is wrong. There are facets of the treatment that aren't being looked at. I cannot resist the comparison between this treatment and training a pet, while some of you may think that is unjust, consider this: I want to teach my dog to sit, when I tell him to sit and he does he gets a treat. When I tell him to sit and he does not, he doesn't get a treat. Either way you look at it, this is positive reinforcement at its basic level. Now, three days later I am still training my dog. He understands the basic principle of reward, pretty soon he will sit as soon as he sees the treat. Does this sound familiar? I'm not trying to compare autistic children to pets or dogs, I am trying to make a simple analogy. Do you think it is appropriate to have children running on nothing but learned responses?

Chances are, the biggest problem you autistic child faces is the lack of critical thinking. This is displayed with the inability to answer "wh" questions. The problem that I have with ABA is that it is designed to circumvent the problem, not attempt to correct it. To me it is human nature to have some learned skills and some innate, I for one do not believe that all innate skills can be learned. It seems that the therapy is unquestionably successful, but by what measure of success? Standardized test scores? A less disruptive child? What are the long term impacts of teaching these children to repress their instincts?

"Green noted that some of these techniques, such as sensory integration therapy, have not been shown through sound research to produce measurable improvements in useful skills or reductions in problem behavior." And here is where the rubber meets the road folks. Problem behavior. Will someone please define that phrase for me? It's really different for everyone isn't it? My experience with "problem behavior" is that most times it is a direct reflection of sensory issues; too much or too little. In my opinion, there are certain sensory deficits that the mind is actually craving or overwhelmed with. In the short term, you might have a much more behaved, socially acceptable child, but in the long term what will happen to these children when all the repressed feelings finally catch up to them?

"Co-researcher Green noted that scientific studies of “eclectic” treatment are necessary because funding treatments that have not been scientifically validated waste scarce resources and costs these children the opportunity to realize their full potential." Speaking of wasting scarce resources... Which is sweeter? The apple or the lemon? Counter to what Dr. Green is saying, there are many treatments out there. Some will work for your child and some will not, ABA is not the only effective one. Once again, you know your child better than anyone else. When it comes to treatments, do the research, listen to opinions and make the decision that you think is best. More often than not you will be right.

The Seattle Times: Autistic teens get help honing their social skills

The Seattle Times: Local News: Autistic teens get help honing their social skills

What was I just saying? Wow, this is a terrific program that I hope attracts some attention. This is a perfect example of what I was referring to in my last post; the thimerosal debate brings the spotlight to our cause, and we need to shine that spotlight on programs such as these.

Alot of resources have been put into early intervention and with good cause, but we also need to be focusing on the long term growth of these children. I don't want to get into a long debate about what the best methods are, you know your child better than anyone and your instinct will usually be your best guide. But when it comes to treatment for adolescence, it seems pretty clear to me that some sort of program to enhance social interaction is what we need. Kudos to the Autism Center!

Robert F. Kennedy Jr.

Robert F. Kennedy Jr.

I can't tell you how pleased I was to find out that Mr. Kennedy is advocating for autism, and in particular the link between Thimerosal and autism. This should be a tremendous boost to autism awareness in general, and hopefully bring us all closer to getting the answers about Thimerosal that we deserve. My hope is that the current press revolving around the potential link should bring about a much higher awareness to the public about the seriousness of autism.

As more prominent public figures get involved, it serves us all in the autism community by giving us credibility and exposure. He has been a tireless advocate for the environment, and it is apparent to me that he will pursue this cause in the same manner. While the prevailing autism headline today might be about potential government conspiracy and cover-up, I have to think that even after the Thimerosal debate is over, the stories of the individuals will carry on. Having grabbed the spotlight, it is now time for someone to introduce the ideas of long-term care and treatment for the affected children.

Meet the Press links � Sunday, August 7 - Meet the Press, online at MSNBC - MSNBC.com

Meet the Press links � Sunday, August 7 - Autism/Thimerosal Debate

If you missed this interview, I would urge you to visit the MSNBC website and watch it there. I would also urge you to visit the Institute of Medicine website and at least check out the brief report.

After reading the brief, it was apparent to me that this study was much less about autism and more about determining the safety of the MMR vaccination containing thimerosal. Ultimately, the report concludes that the epidemiological studies were at a disadvantage, but that it was the best science they had to work with. And since measles, mumps and rubella are life threatening diseases (and potentially epidemic in nature), the threat of death and potentially deadly epidemic outweighs the non-life threatening disorder of autism. If I read it wrong, please feel free to disagree.

Then to see Dr. Fineberg being so clearly defensive. Not necessarily in his demeanor, but certainly in the verbiage he used. Consistently defending the epidemiology and the fact that the group of volunteers receive no compensation. He did little to answer the direct questions, skirting the issue, and claiming that the epidemiological studies show that there is no link between thimerosal and autism. Which is not what it says (exactly)... What it says is that "The evidence favors rejection of a causal relationship at the population level between MMR vaccine and autistic spectrum disorders" and "A consistent body of epidemiological evidence shows no association at a population level between MMR and ASD". So let's do some math here, shall we?
The latest figure that everyone is using is that 1/166 children are being diagnosed with autism. That means that if all of these studies combined surveyed 100,000 people, only 600 or so autistics would be represented. It would seem to me that 600 out of 100,000 could not determine anything at a population level. Clearly, if this was effecting us at the population level, the reported cases would be considerably higher that 1 in 166. Combine that with the fact there is the possibility that some children develop the disorder through genetic disposition, and the number of kids effected by thimerosal is even lower. Then the report goes on to suggest that "available funding for autism research be channeled to the most promising areas". In other words: "We know that the general population is more at risk by not getting vaccinated, so let's not spend any more time trying to see if thimerosal is linked to the massive spike in reported autism cases."

My favorite exchange came here:

MR. RUSSERT: You're absolutely convinced there's no connection
between thimerosal and autism?

DR. FINEBERG: I'm convinced that the best evidence all points to the
lack of an association. These studies can never prove to the point
of absolute certainty an absence of an association. But I would say
this, other avenues of research looking at other possible causes
today are much more promising ways to spend our precious resources.

In other words, "No, and the IOM is done looking."

The transcript from the interview is here.
The video on MSNBC.com is here.

Seinfeld, Simon to Play Autism Benefit - Yahoo! News

Seinfeld, Simon to Play Autism Benefit - Yahoo! News

Terrific news from our absolutely favorite guy (Jerry). And that Paul Simon guy isn't half-bad either.

Welcome!

Having had our autism awareness site up and running for better than 9 months now, and the continued success of our IMAGINE wristband, I felt it was time to open up some sort of forum. Perhaps to just give myself and others a place to vent, and maybe on the off chance that something of importance might be said.My wife and I started JAX Management, Inc. With the idea that we could use our company to further the awareness of the autism disorder.

We are fortunate enough to have business associates who are well connected throughout the world, and particularly in the molded rubber business. Attempting to capitalize on the current craze, we created the IMAGINE wristband, Lots of people have asked "Why Imagine?". And the answer is pretty simple: we wanted to use a single phrase, one word if possible, to convey our message. Imagine struck me almost immediately, because when my daughter was younger (and still to this day) had an extremely active imagination. She would absolutely drive us crazy, constantly wanting to play pretend, my wife and I literally spent hours a day in "school" or playing with her "friends" or playing "house". And when we just could not spend another minute doing it, she would continue on without us! The part of this that always stayed with me was that it seemed like a social solitaire. My hope was that as she began to get older and it became more apparent (in social situations) how different she was from the other kids, that somehow she could use that vivid imagination to fit herself in.

So here we are, more than five years since her official diagnosis of autism. Five years of speech and occupational therapy has paid off tremendously. About two years ago, she really seemed to turn a corner in her communication skills. Before that, she absolutely could not convey her feelings with words. And as many of you know, this is probably the most frustrating part of the disorder. The inablility to find out exactly what makes her hands go over her ears for example. We feel like we have been very lucky. We have been blessed with many caring individuals over the years, professionals, family & friends. The progress that we see in Jacqui is a tribute to them all, and to my wife's tireless pursuit to see her potential realized.Hopefully one of us can either find newsworthy articles to post here on a daily basis, and if not at least have something worth saying.

Please check back, and feel free to post your comments. If you don't already have a blogger.com account, you'll have to sign up to post. It's free, and it keeps the riff-raff out.