Re: Autism epidemic largely fueled by Spec, long

[Guest guest]

In a message dated 11/18/2007 11:08:57 A.M. Central Standard Time,

wrld_n_harmony@... writes:

I personally think it would greatly help children with ASD if there

were subgroups. The reason for this is because there is a huge

difference between what Asperger's ASD kids need and non-verbal ASD

kids need, and everything in between.

Subgroups is an interesting notion, more so would be separating diagnoses

altogether. Read this article Adelle on Tilton wrote 2 years ago on her

blog at About.com Guide to Autism. Sorry it's kind of long.

Autism Is Not Always Autism, by Adelle on Tilton

I have thought about this issue and about writing this article for a little

over a year. I haven’t for several reasons.

* I needed my thoughts to coalesce and form a solid foundation.

* I didn’t want the negative reaction that I knew would head my way.

* I didn’t want the positive reaction that I also knew would head my

way.

I am not a physician, nor am I the owner of a crystal ball. With autism,

like so many things in life, I work through intuition; not the intuition that

you hear about in psychic circles, but the intuition that every mother has

about their child. When you couple that “mother’s instinct†with my

previous

training, I think I can make what could be considered at the very least an

educated guess. I believe my educated guess is correct.

Ladies and gentlemen of the jury, please bear with me as I backtrack a bit

and then I will present my case.

I promise it will be relevant. Illnesses (basically) come in two forms:

They have a single cause and effect and receive a diagnosis or they are a

syndrome. A syndrome is a grouping of symptoms that may or may not be related

to

each other but seem to be present in the majority of people who present with

the same syndrome. For instance, Chronic Fatigue Syndrome; it does not have a

test that can determine its validity but it presents with symptoms that are

consistent (for the most part) from patient to patient. Doing some further

research in your spare time into “syndromes†might be of interest to you.

At any

rate, autism is a syndrome. It presents with a whole bevy of symptoms

including, but not exclusive to, language difficulties, communication

restrictions,

repetitive behaviors, socialization difficulties, an inability to “connectâ€

with others, angry outbursts that can lead to violent meltdowns, discomfort

with eye contact… the list continues on and on. And each child that presents

with this group of symptoms is eventually diagnosed with something, usually

something on the autism spectrum, and the symptoms are worked with either

medically or through the use of therapy. During the recent explosion of autism

cases in the United States and abroad, there seems to be a common thread that

researchers deny and parents insist on pursuing. It is the whole vaccine

issue. Children who were developing normally receive their MMR shots at about

16-18 months of age and then begin a steady regression. This regression can be

rapid or it can be slow, but either way it steals away the child’s ability to

interact, speak, understand language and it bestows the gifts of obsessive

compulsive behavior, repetitive activities, and socialization problems. It

also can leave a child prone to severe anger outbursts. There are other

symptoms

but this is enough to present this case. Needless to say, the vaccine is

blamed because before the event, that singular event, everything was fine. But,

it isn’t that simple, for there are a group of children that are on this

spectrum, that show these symptoms on the syndrome, yet were “different†in

some

way from the time of their birth. The vaccinations are not involved with

this group of children for they did not lose skills; they never had the skills

in the first place. These children tend to display the syndrome symptoms at

approximately the same age, not because of a vaccine but because of the way in

which children develop. At the age of about 16-18 months children make major

strides in their development and these children do not make those strides.

They stop. Right there at about 16-18 months they come to a grinding halt

developmentally and then they progress very, very slowly over the remaining

years,

gaining a year’s development for every five to 10 years of their lives. The

syndrome symptoms are there but other symptoms are added: Epilepsy,

retardation, and many others that are medically complicated and make behavioral

therapies more difficult to manage.

Next Monday, read part two of this article. The last part will be published

on December 26th.

Created December 5, 2005

Not a Clinical Diagnosis but a Relevant Observation to the Mystery of Autism

Coming back to the main point, this has caused a major fracture in the

autism community. When you have one set of children with a set of syndrome

symptoms that began exclusively at just under two years of age, and another set

of

children, a much, much smaller set incidentally, who started out with the

disorder and it only became apparent to the level at which it could no longer

be

ignored, at just under two years of age, there is going to be conflict. One

set is considered high functioning, while the other set is considered low

functioning. It should be obvious which set is which. And that isn’t a very

flattering comment to make in evaluating a child, is it? Low functioning? It

paints a very grim future picture for that child. Logically, the syndrome

symptoms

are all the same, so therefore, would it not make sense to label this

diagnosis, this syndrome, as one in the same, for as it presents the same, must

it

not be the same as well?

That is what has happened. The autism spectrum disorder diagnosis was

created and enfolded everyone and anyone who displayed symptoms of the

syndrome.

But that did not solve the problem and in fact, has created a much larger

problem. Once again, let me digress. In the position I have at About.com,

Inc., I

have seen, met, talked with, interviewed, and being involved with a very

large number of people on the autism spectrum. I have done this elsewhere as

well due to my own son’s autism. And what I am seeing is two different

disorders; they are similar, it would be easy to lump them together, but I

think that

we are making a mistake by doing so. I do not see autism spectrum disorders

as one syndrome that has different levels of severity with high functioning on

one end and low functioning on the other. What I see are two distinct things

that have only a very few things in common.

Let me explain.

High functioning autism has a common thread working its way through all the

kids affected. Granted there are “higher high functioning†kids and

“lower

high functioning†but basically these children can all learn to speak to one

degree or another, wish to engage in communication, can be treated through

therapy (ABA, behavioral therapies, speech, etc) and do show improvement. Many

of them are mainstreamed into “normal†classrooms with their peer group.

They

express emotions, affection, friendship, and recognize friends and family.

They understand birthdays, Christmas, many conceptual thoughts (tomorrow, a

surprise, the temperature outside, yesterday and so on) and provide therapists,

teachers and parents an immense amount of “raw material†to work with. Low

functioning autism is a 180 degree turn away from this, although at first

glance the symptoms and the syndrome does appear to be there. These kids do not

speak, often do not understand receptive language, do not care nor do they

wish to engage in conversation unless it is absolutely necessary and it is

extremely limited due to the lack of speech, do not respond well to behavioral

therapy, and do not show a great deal of improvement. Retardation is common,

epilepsy is common, and other disorders may be present as well. They do not

express emotions (except anger) and whether they experience those emotions is

unknown due to their inability to communicate. You won’t run into one of

these

children or adults on the Internet or at the grocery store; they can not

manage the communication necessary for the Internet and they do not manage

their

behavior in public well at all. They can be violent and for no reason at all

(or no reason apparent to the rest of us) attack someone and then be fine and

passive again a few minutes later. The “raw material†they provide

therapists is very, very limited.

Yet all of these children are diagnosed autistic.

This, to me, does not make sense. I do understand degrees of severity. As a

cold or flu, you may have a mild case or a severe case. But regardless, you

still have the flu, you are treated for the flu regardless of the severity and

you respond to that treatment. A child with high functioning autism

receives, as well he or she should, an entirely different treatment than a

child with

low functioning autism. A low functioning child could not tolerate the

sensory input that a high functioning child can, and it isn’t even an option.

Next week, I will tie up this series and ask the questions that the entire

autism community, in my opinion, needs to be asking. The time for some serious

research and some serious answers is now. We can no longer wait for the

politics of autism to untangle itself; now is the time to do something.

Created December 12, 2005

Separating Diagnoses May Give The Best Credibility

Backing up into the 1950s and 1960s, statistics told us that only four

children in 10,000 had autism, which at that time was considered what we now

call

low functioning autism. That is only one in 250,000 children and that is not

very many. Now the statistics tell us that one in 166 children are on the

autism spectrum disorders; some communities in California are at one in 100 and

Brick Township in New Jersey is at one in 10. Those are vastly different

numbers, staggering in their immense disproportion. You math wizards can figure

out the percentage of the increase. I just know it is high - very high. Too

high to make sense.

It doesn’t make sense because the human genome has not changed much in the

past how-ever many tens of thousands of years. Humans now are basically what

humans were. (As a side note, in my research I found that only cats have had

that little of a change in their genetic makeup - cats and humans have not

changed a lot - another interesting tidbit.) So we can’t say it is genetic

unless there has been some unseen and undocumented shift in the human genome

within the past 20 years. I’m sure had that happened, we would know about it.

The

introduction from the environment (meaning introduction into the child from

the outside) of a substance that could cause this, does have a certain logic.

Especially when coupled with a genetic code that could have been there all

along but needed the right “trigger†to cause it to fail. The gene could

have

been there since Day One of Human One, but it needed the right kick to break

it; mercury and thimerosal would definitely be something that would make

sense. After all, can this many parents be wrong? Obviously, something is going

on. But, having said of all that, we still must return to square one. What

about the 4 in 10,000 in the past and what about the low functioning autistic

children today? These children are in a huge minority and they aren’t being

looked at as closely as the high functioning children. Probably that is for a

couple of reasons; one being that these kids are not going to respond as their

higher functioning companions will and frankly, no one knows how to reach

these distant and silent children who have no need to reach back. I do not know

the statistics on low functioning autism. I don’t know if there even are

any. I can’t find any but I would be willing to put a year’s wages on those

numbers being about the same as autism diagnoses in the past, adjusting for

population growth and other variables. If I am right, then the increase of

diagnoses of autism spectrum disorders is on the rise because it was collected

into

a previously existing diagnosis. It was the closest, it made some sense to

do it that way, but are we really truly looking at the same disorder? In my

opinion, no, we are not looking at the same disorder. There are two things

going on here. There is autism and then there is autism. And the two have very

little in common.

I realize I am not the first to come to this conclusion. There have been

other commentaries about this very issue. I have heard it referred to as “

vaccine induced autism,†and “classical autism,†which is what I’m

talking about,

but I think the terms still fall short.

Building on my assumption, where does this leave the autism community? How

can this information be researched and developed into treatments? Can the

diagnosis be separated? Can the research community, and even more specifically

and critically, the government, be expected to be honest enough to fund

research into this problem and help both sets of kids? Can the community of

people

concerned with autism unite and stop accusing whoever they are accusing that

day, while trying to litigate for damages, or at least have the right to

litigate, and put that money toward honest research that places no financial

blame

but solves the unending question of, “How has this happened?â€

That is asking a lot. Each individual family would have to ask themselves

how they really felt about that. Without some serious dismantling and

restructuring of the diagnostic criteria, it isn't going to happen. The real

problem

is who is paying for this - I don't mean financially. I mean, who is

suffering? The kids. The kids with both kinds of autism who have, due to our

inability

to solve this problem, a lack of cause, treatment, and a future that is

dubious at best.

Created on December 17, 2005 (after Adelle on Tilton wrote this

feature she left her position at About.com Guide to Autism / Pervasive

Developmental Disorders, by the way she is the mother of a 15 year old child

with autism)

CReece

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