Friday, March 31, 2006

APRIL

April is upon us: The one month of truly pleasant weather in South Louisiana; the month where our thoughts turn to JazzFest! And it’s Autism Awareness Month.

If you’ve managed to find your way to this blog, chances are pretty good that you’re already aware of autism. In our house, we’re more aware of autism than we really want to be. But one is supposed to observe these events, so I thought I would list a few things about autism of which I am aware.

I am aware that ⎯ despite what anyone may say to the contrary ⎯ we are in the midst of an epidemic of diagnosed autism.

Does that mean that the actual number of autistics has risen sharply? There is no way to answer that question. A convincing argument may be made for that to be true. On the other hand, it may well be that, from a quantitative standpoint, the number of autistics has remained stable. If that is the case, though, then it seems apparent that the severity of the clinical manifestations by which autism is diagnosed is greater in more individuals than before. In either case, there has to be a reason.

I am aware that, at least for my family, autism is not a “living hell.” Neither is it a bed of roses.

I try not to blog too much about my son, and what we do for him. I can tell you this. We love our little boy for who he is, and we accept him unconditionally. We do not, however, accept what has been done to him.

Yes, there are many things we can’t do as a family because of l’il Rank’s autism. But we still manage to find joy in one another. I often say that a child’s autism bestows a special gift upon the parents; we get to celebrate little milestones and victories each day that other parents take for granted ⎯ that I took for granted with my other children. Being the father of an autistic child has made me a better parent to all my children.

That being said, autism presents challenges to development and to life itself. There is nothing easy about it, and the strain of dealing with it places a strain on family life. The irony of becoming a better parent to all my children is that there is less opportunity to be that better parent except with regard to the autistic child.

We are painfully aware that not all autistic children develop to become independent adults. Therefore, we fell it incumbent upon us to do whatever we can to see to it that our little boy will be just fine after we’re gone.

I am aware that there is an unresolved controversy about the role of vaccines as a causal factor in the development of autism.

Some see the vaccine question as being two separate controversies: the role of thimerosal, and the role of live-virus vaccines (primarily the MMR). In all likelihood ⎯ and this seems to be the direction in which the research is heading given the likely involvement of the immune system ⎯ either or both can play a role. Anecdotally, problems with both metal toxicity and immune function are apparent in many autistic children, and treating those problems often results in alleviation of the clinical manifestations of autism.

All that being said, most of us who believe that vaccines played a role in our children’s autism also believe that neither thimerosal nor any live viruses would have caused the damage but for some genetic predisposition.

Are vaccines the only toxic exposure that can cause autism in a genetically predisposed individual? There is no reason to assume that the damage to the immune system caused by vaccines could not also be caused by other environmental insults. Exposure to lead, for example, could possibly be involved. Eating mercury-laden fish is often cited as a source of danger. If damage to the immune system is the key, then it stands to reason that there may be any number of possible insults that could cause problems. But the temporal connection between the rise in diagnoses of autism and additions to the vaccine schedule in the United States cannot be ignored, and thimerosal stands as a very likely culprit.

I am aware that, for many autistic children, autism is treatable. Of course, the protocols that might be successful with one child will not necessarily work with another. The clinical picture is different for every autistic individual. Moreover, choosing an appropriate intervention implies not just looking at the causal factors in a particular case, but also weighing the known risks against potential benefits.

Okay, I said autism is “treatable.” Does that mean autism is “curable?” That depends on how we define “autism” and how we define “cure.”

If one defines “autism” as a genetic state of being, separate and apart from the clinical manifestations, then it cannot be denied that all of the protocols that could ever be devised are ineffective. On the other hand, if one defines “autism” based on a clinical picture consisting of various behaviors and/or dysfunctions, then anecdotal evidence suggests that successful treatment is possible.

“Curing” is a different question. Again, no known intervention can “cure” a person of his/her genetic predisposition for autism. Functionality, from both educational and social standpoints, is simply too fluid a concept to draw bright-line distinctions. As parents of autistic children, we struggle to find better words: alleviation, easing, healing, etc. Some of that struggle is tied up in the moral debate about the ethics of “curing” autism. Perhaps a better semantic construct could be found, but there is something so convenient about the word “cure” that I still tend to use it, but always keeping in mind the limitations of how far any intervention may take us and also how easily the word can be misunderstood.

The goal for my son is simply put. I want him to be able to function independently in a world he understands and in a world that understands him. I want him to appreciate all of the nuances of interpersonal interaction and of an idiomatic culture. I want every door of opportunity to be open to him.

Some of that requires making society more aware of autism and everything it entails. And some of that requires being aware of what my wife and I can do to help our son handle the challenges of autism.

16 Comments:

Blogger María Luján said...

Hi Wade
Thank you very much for this wonderful presentation. I agree with you in almost every point you mentioned.
The emphasis in the meaning of the words and the words themselves are important in autism.
What is the autism definition?
What is "cure", "state of being" definition?
How medically can be all these defined?How beyond medicine we can understand all this?
It seems to me that what is diagnosed under the DSMIV requires a better specification today, given the enourmous variation from children with the same diagnosis. Under the use of DSMIV, autism has a lot of components, different at the individual level.
I , like you, think that
a-there is a state of being given by genetics
b-BUT all of us are the results of it AND gene expression, epigenetics and interaction with the environment (with all including air, water, food, vaccines, antibiotics, infections,herpes, HM in general,other etc)...and
c-also our personality results of all these extraordinaire aspects that are so important for us in development: love, acceptance, patience and guidance.
The polarisation of the debate is such that there is two different opposite views. Neurodiversity seems to see Autism focused in a and considering c as the main aspect to support whereas the premise of autism=Hg poisoning is focused in a part of b as the definition of what autism is and therefore c is not enough per se.
Why can´t we have an integrative view of autism, accepting a, looking for whole b and always trusting in the importance of c?
I hope to give my son the emotional support and the strength with the wide expression of this integrative view of what autism is, that for me gives him the dignity, the respect and the consideration by the human being he is. This integrative view of autism gives respect for difference and also consider the possibility- to be ruled out by testing (appropiate and trustable)- of comorbilities that can be result of the gene expression/epigenetics and the interaction with the environment. You can treat the comorbility, but not cure the autism. You can modify behaviors and heal medical problems, but the autistic child will be always present because of genetics.BUT healing, treating comorbilities how do you know IF you touch some of the core of the gene expression? How do you know if it is the difference between verbal communication or not, considering appropiate treatment?
These are very important decissions for parents and for me is unfortunate the lack of a non-controversial and serious presentation of options by mainstreamed doctors. I am talking about life quality. I am talking about treatment of pain and suffering that can be present and unnoticed or confused with other things such as aggresivity. Not always, but sometimes. I am talking of consider all the medical conditions that can be present WITH the different genetics and deserve for me serious consideration, adequate testing and proper treatment.
The problem for me is when the comorbilities are used to define autism and I do not agree with this view.
I think that an integrative view of what autism is,accepting that there are controversial personalities and treatments to be discussed in terms of safety and efficacy, considering that we can have an approach of healing comorbilities using the common science and serious approach and that we need more research and nothing has been stablished for sure, is possible. I think that we can separate what is not serious from serious science to help to treat comorbilities in our children, perhaps not from autism research itself. I think that we can construct a different view of what autism is in mainstreamed doctors if the ideas are presented by serious science and commited research based on high technology and always considering ethics. I think that it will be difficult but beyond my personal point of view, an integrative view of autism is going to develop.I hope this for our children.
María Luján

4/1/06, 6:52 AM  
Blogger Wade Rankin said...

María,

Thank you for your thoughtful comment. Our one area of disagreement concerns the line some draw between autism itself and comorbidities. I tend not to use the word myself, because I don’t think any of us really knows where autism ends and the comorbidities begin.

A diagnosis of ASD is typically based on a constellation of behaviors and/or dysfunctions. If a particular problem ⎯ gut problems for example ⎯ are causing some of those behaviors or dysfunctions, can we really say the gut problems are just “comorbidities?

Maybe we are just treating “comorbidities,” but that’s not the point. Most parents out there who use interventions of one kind or another, tend to equate “cure” with a loss of diagnosis. That is, once the child loses his/her diagnosis of ASD, victory is declared. I’m really not sure if that is the correct measuring stick or not; the genetic underpinning will always be there, and perhaps some of the behaviors will remain as well. But like most parents, I would view the loss of the diagnosis as a measurable point of success.

My point is, I don’t particularly care if I am treating autism or comorbidities. All I know is my son is getting better.

4/1/06, 8:13 AM  
Blogger María Luján said...

Wade
I used the word comorbilities only because as you say, we do not know when the line must be drawn.
You say
can we really say the gut problems are just “comorbidities?
And I agree, I do not know. Therefore I included my question
BUT healing, treating comorbilities how do you know IF you touch some of the core of the gene expression? How do you know if it is the difference between verbal communication or not, considering appropiate treatment?

SO I have only two deffinitions of
or we say comorbilities treatment or autism treatment. I do not know what is what, depending on the intervention, although I do think that gut healing is extremely important in the picture. As you I have had to pick one. I preferred comorbilities only because being autism of genetic root for me, treating the gut is treating the gut not autism for sure but I do not know. When I say comorbilities I implicitly acknowledge that I do not know what will be the supposed impact in the autism itself the healing of the condition in particular.
Like you, I will be happy if my son lost his label under the neurologist consideration. But in the same way when I was told the worst scenario possible we begun our own journey of clarification about what autism was and particularly in my son, I will have clear that my son will be genetically different all his life.
However, the possibilities of high life quality is my desire for him and I struggle so he can have the oportunity to choose himself.
In some way, the difference about what we are treating only give us perspective about. Like you I am happy that my son is getting better and in a final picture, for me is what it matters.

4/1/06, 8:35 AM  
Blogger not my blg said...

Wade,

I really appreciate your words: "The goal for my son is simply put. I want him to be able to function independently in a world he understands and in a world that understands him. I want him to appreciate all of the nuances of interpersonal interaction and of an idiomatic culture. I want every door of opportunity to be open to him.

Some of that requires making society more aware of autism and everything it entails. And some of that requires being aware of what my wife and I can do to help our son handle the challenges of autism."

This has been my approach as well.

Maria>

I wish you would start a blog, I so much enjoy reading everything you write and I especially like the way you approach the subject with moderation and a neutral curiosity that is missing in this debate.

4/1/06, 10:44 AM  
Blogger María Luján said...

alexander daddy
I appreciate very much your words -and also from Wade commenting about I having my own blog.
Being honest, as you know english is my second language. I really enjoy sharing thoughts and ideas with all of you about a so important issue for us such as Autism. I think I can manage very well the language at the formal level of the science I must publish. Sometimes I feel that I need more background in "every day" english language to be enough clear about. My compensatory way has been to be lenghty in my posts to explain enough and to backup with science as much as I can, something I appreciate Joseph, Wade, Not mercury and others have had the kindness to support with consideration.
Because of time and work considerations, it is not easy to prepare a blog with enough care as I would want, today. In the future, I plan to have my own blog and comment, now it is very difficult for me.
I appreciate very much your comment. As everyone here, I am deeply touched emotionally by autism. I have had to grow up a lot emotionally and spiritually to understand what is autism for my son and all the considerations you struggle with and you know. I share a lot of emotions that many times are commented and understand why there are so much anger involved, by different reasons.BUT I try to overcome these negative feelings and bring to the debate the idea that we can help each other with our personal experiences if we respect that every one has a different personal view of autism because autism is different in each child. So we can learn of the others experiences, that is untransferible. From this place we can discuss science, feelings, ideas and positions , everything, taking care of the others feelings and thoughts.
Wade´s blog has been for me this kind of place, the first one I meet. Ian now is a new place to visit with the same feeling. The more I am blogging, more sites I am finding with this view.I hope we can construct this place of meeting, even with different positions in many many blogs. In the meanwhile I have not my own blog I will try to give this idea a chance.
María Luján

4/1/06, 11:18 AM  
Blogger Joseph said...

I am aware that ⎯ despite what anyone may say to the contrary ⎯ we are in the midst of an epidemic of diagnosed autism.

Does that mean that the actual number of autistics has risen sharply? There is no way to answer that question. A convincing argument may be made for that to be true. On the other hand, it may well be that, from a quantitative standpoint, the number of autistics has remained stable.


Hi Wade. I'll take issue with your statement here. We're in a period where the number of diagnosed cases of autism is very high, and still rising a bit. I don't think the right word for it is "epidemic". It's pretty clear to me at this point that there hasn't been any epidemic at all. I say this from changing characteristics, from regional differences, and from caseload changes in comorbidities. I might even dig further evidence from the data.

4/1/06, 6:58 PM  
Anonymous Shawn said...

The irony of becoming a better parent to all my children is that there is less opportunity to be that better parent except with regard to the autistic child.

Wade, it may appear this way on the surface but I'm thinking that you're probably selling yourself short. I think that being the parent of an autistic child has helped us grow in ways that makes us both better people and better parents.

4/1/06, 10:37 PM  
Blogger Kristina Chew said...

And simply better people!

Thanks for your unstinting honesty and your good sense.

(With memories of April up the river in St. Louis.)

4/1/06, 11:44 PM  
Anonymous Linda Betzold said...

Every time I read your blog, I have the same thought. Thank heaven there is a person like this on the planet, at this time, who is willing to share his ideas.

As always, a pleasure,
Linda

4/2/06, 11:26 AM  
Blogger SquareGirl said...

This is a great post Wade, and after many years of observation and research, have come to many of these same conclusions. I realize that people continue to dispute the evidence that we are in the midst of an "epidemic" based on the conclusion that autism is being more diagnosed, however if you look at what is happening in school districts, you will notice that more and more teachers are seeing an increase of percentage autism in their classrooms. In addition, schools are adding more and more special education classes and programs, so wheter it is severity, or incedednces, something is happening. From someone who has been "aware" of autsim most of my life, I am certain that it is becoming more prevelant, rather than just an overall increased awareness of autism. That being said, the "autsim" of today looks very different than the "autism" of ten years ago.

I think autism can be a wonderful thing for helping us to learn acceptance, love, patience, non-descrimination, compassion and unfortunately many people are missing the lesson the children are bringing. At the same time, I have seen children who have gone "untreated" and have become even more convinced that "treatment" is necessary for children with autism in order fo them to fulfill their potential. We have many examples of greatness who might not have achieved such, without treatment (Helen Keller for example).

Needless to say, this is why I visit here. For your rational and logical conclusions. Thank you.

4/3/06, 3:53 PM  
Blogger Joseph said...

however if you look at what is happening in school districts, you will notice that more and more teachers are seeing an increase of percentage autism in their classrooms. In addition, schools are adding more and more special education classes and programs, so wheter it is severity, or incedednces, something is happening.

Obviously, an increase in diagnoses will have an impact such as this. This doesn't mean that the autistic makeup of the population at large has changed in reality.

What exactly is the evidence that it has? The prevalence numbers are meaningless because they compare apples and oranges. So there's no evidence, really.

If we were to find that the average age at which children learn to speak is on the rise, this might be significant. There's no such finding that I know of. The data we do have suggests that objectively diagnosed co-morbidities linked to autism are not on the rise though. This, along with other observations are strong indications that an epidemic starting in the 1990s has not occurred.

I have invited autism epidemic proponents to post rebuttals to my arguments but there have been no rebuttals, just disagreements.

4/3/06, 5:50 PM  
Blogger MOM-NOS said...

Well-balanced and thought-provoking, as always, Wade. Thanks.

4/4/06, 8:58 AM  
Blogger Ian Parker said...

Joseph said:

"I have invited autism epidemic proponents to post rebuttals to my arguments but there have been no rebuttals, just disagreements."

In my case, one of the reasons I haven't been interested in rebutting the findings is that I question the very practice of analyzing the California data in the first place.

As you quote from a communication from Paul Choate (DDS Data Extraction):

"CA DDS has client evaluations (CDERs) on all clients over age three in our service delivery system. There is no requirement for California residents with autism or other developmental disabilities to be served by our system, participation is voluntary. Thus we do not have information on the prevalence of autism in the general population, we only have information on those who come to us for our services. It is unknown how our population reflects trends in the larger population, as the number of clients seeking our services is a function of a number of internal and external factors."

I would suggest that analyzing inapplicable data to refute the conclusions of others drawn from the same inapplicable data says more about the conduct of the autism debate than it does about autism.

Is there room for a 'cause' for autism beyond genetics? I would suggest that there is. Does the possibility of an exogenous 'cause' prove the case that there has been an 'epidemic'? No. It does open room for a plausible hypothesis to be made, but that is not the same thing.

One of my pet frustrations re: autism is the lack of good population and time series data. The studies I've seen with the exception of one study by Wing in the 1970s suggest that the incidence rate has been stable within the studied samples, but none of them (again, other than Wing) have comparable data from prior to the 1990s (and Wing used a different diagnostic criteria). Everyone interprets the missing data according to their own biases, but doesn't the absence of data mean that the answer is unknowable?

There may have been a long term increase in autism (e.g. 1950s to today) or maybe the rates have been stable. To my mind the only way this question is 'answerable' is through definitively finding the 'causes' of autism (genetic/epigenetic and exogenous). From there one could formulate a reasonable hypothesis based on whether any of the factors behind any exogenous causes have increased over time. But that is probably the best one will be able to do.

4/4/06, 10:34 AM  
Blogger Joseph said...

In my case, one of the reasons I haven't been interested in rebutting the findings is that I question the very practice of analyzing the California data in the first place.

I tend to agree that CDDS data is not necessarily reliable because not everyone is required to seek CDDS eligibility as CDDS Data Extraction itself notes. Two points though:

1) This is the favorite database of autism epidemic proponents. But apparently, when it's used to demonstrate the opposing hypothesis, it's no longer found to be appropriate.

2) The CDDS data on epilepsy, mental retardation, and other diagnoses is quite stable -- an indication of some reliability.

There may have been a long term increase in autism (e.g. 1950s to today) or maybe the rates have been stable.

This is a substantially different debate. Slow rises in actual prevalence over decades or centuries could even be due to genetics.

4/4/06, 4:46 PM  
Blogger Estee Klar-Wolfond said...

Part of society opening doors and understanding our children is to change our conceptual views about disability and what quality of life means. If we can re-evaluate it, redefine it, many with people autism and other disabilities will have an opportunity to have a life full of open doors.

A real QOL for people with varying degrees of disability is likely outside of our own subjective definitions about quality of life. Something we must all consider when we seek to "treat" our children.

As a parent dealing with the immediate reality, these goals don't seem far-fetched. But I think we have to work from both ends -- We have to work to change views of disability, QOL, and find the ways our kids can learn.

4/4/06, 4:47 PM  
Blogger Ian Parker said...

Joseph said:

"1) This is the favorite database of autism epidemic proponents. But apparently, when it's used to demonstrate the opposing hypothesis, it's no longer found to be appropriate."

A couple of thoughts:

a) I'm not sure that I am a believer in an 'epidemic', as distinct from an increase in incidence rates - possibly significant - over time, but the fact that I quoted your 'lack of rebuttal' statement makes it appear that I am. I sometimes - like others in the autism discussions? – incorrectly tend to interpret use of the word 'epidemic' as a surrogate for any belief in any increase in incidence rates over time. My mistake.

If you are using 'autism epidemic proponents' as just such a surrogate (and you may not be) then the word "some" is missing, as in "This is a favorite database of some autism epidemic proponents. Feel free to substitute the words "many" or even "most" if you feel appropriate.

b) "demonstrate" implies 'to prove', as in "to show to be true by reasoning or adducing evidence". Even the best crafted analysis does not necessarily prove anything if it is based on the use of inappropriate data. Two competing misapplications of the data do not render it valid.

Joseph said:

"2) The CDDS data on epilepsy, mental retardation, and other diagnoses is quite stable -- an indication of some reliability."

But a) the diagnostic criteria for epilepsy are (understatement alert) 'a bit more rigorous’ than those for autism, and b) by even starting to argue this I'm falling into the same trap of misapplying the data. (On that note, you may also want to consider geodemographic impacts.)

Joseph said (re: potential longer term changes in incidence rates):

"This is a substantially different debate. Slow rises in actual prevalence over decades or centuries could even be due to genetics."

Yes, it is a different debate from 'thimerosal caused an autism epidemic' (and also suggests that you were using the word ‘epidemic’ correctly, by the way – again my mistake). It is the suggestion that there may be longer term factors at play in at least some cases. I'd suggest that invalidating the 'thimerosal caused an autism epidemic' hypothesis does not invalidate the potential of any or all other exogenous factors to cause a rise in incidence rates. I'd also suggest that some are trying to use a potential refutation of the ‘thimerosal = autism epidemic" hypothesis as a surrogate for 'all autism is natural variation and nothing else'. Joseph, I'm not suggesting that you are in this group.

Changes over several decades are unlikely to be due to genetics (we just don't procreate that quickly for genetic drift to have that much of an impact, and natural selection at that speed would require a cultural explanation that would be hard to miss), although exogenous factors could have an epigenetic impact. Over centuries I agree with you, although again there is evidence that other factors can also be involved.

4/4/06, 6:52 PM  

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