Re: Re: Roche has signed an agreement with Seaside Therapeutics to develop new treatment

[Guest guest]

helen said:Many readers (like myself) may not have an extensive clinical education or background in working with special needs adults but we have *lived* in this world and our communities and we are quite capable of critical thinkingme here:I am unsure if she means this critical thinking in the manner i understand it. Critical thinking is a different way thinking....a whole different way of thinking.Bill and others would have a clinical approach.....the two thinking styles ( critical versus clinical) can be used to read the same piece of information and get different interpretations. 40 AS critical thinker wannabe..damned biologist by default. The information in this document is confidential and is intended solely for the addressee. Access to this document by anyone else is unauthorized. If you are not the intended recipient, any disclosure, copying, distribution or any action taken or omitted to be taken in reliance on it, except for the purpose of delivery to the addressee, is prohibited and

may be unlawful. This document and the content remains the intellectual property of To: aspires-relationships Sent: Wednesday, 11 July 2012, 1:18 Subject: Re: Roche has signed an agreement with Seaside Therapeutics to develop new treatment

Bill,

> > Roche has signed an agreement with Seaside Therapeutics to develop new treatments for autism and other neurodevelopmental conditions such as Asperger's syndrome.

> > http://www.inpharm.com/news/173056/roche-signs-research-deal-autism-spectrum-disorders

>

> Helen, it's the dissemination of articles like this one which *fosters

> ignorance* of what autism really is.

<snipped>

LOL! Didn't I *say* "don't shoot the messenger?"

Are you suggesting we practice censorship for the sake of the odd concrete and literal thinker, or do we raise the bar a little higher? I give our membership credit for a lot more intelligence.

Many readers (like myself) may not have an extensive clinical education or background in working with special needs adults but we have *lived* in this world and our communities and we are quite capable of critical thinking.

Some members will probably skip over this article entirely, but those who read it, especially those who are advocating for a loved one, or are self advocates, and self advocacy groups like ASAN, would want to know about "research" like this, for a number of reasons. ASAN's concerns are mainly ethical, but also to raise public awareness that the charity dollars you donate to large autism groups, and the dollars you lobbied the government for to be directed towards autism, may not be going to support the autistic and their families, but rather, to research like this.

PT Barnum said there's one born every minute, but thinking folks know that Big Pharma wouldn't be pursuing this if there was no potential to make gain a profit. Desperate parents may cling to the hope promised by snake oil salesmen, but the reality is that autism can't be "cured" - especially not with a pill. It's what a person IS. Groups like ASAN make that very clear.

That being said, it's good to have someone with the professional background who can explain "why" such research is flawed. Many members here with more than a passing acquaintance with autism will know that proceeding from the premise that what helps Fragile X will also help autism is wrong. By now most of us have heard about the 2.3 billion dollar settlement against Pfizer Inc. for promoting off-label use of medications. A cautionary tale for Roche. But I digress. Again, to have someone explain exactly "why" it is wrong without having spend hours with "Google" is a time saver. Thanks for that. And we will continue to pass these items on for comment.

- Helen

[Guest guest]

helen_foisy wrote:

> How do you allocate services and support for

>>> a part of our population that you see as just an extension as

>>> what we believe TODAY as normal.

>>

>> The same way we already allocate resources for wounded veterans,

> homeless people, accident victims, " special needs " , etc etc etc...

> Etc! First we *identify a problem*. A real problem, not conformance

> to a label - a real problem. Then we devise a solution. Then....You

> know all this . You're baiting me. Not nice.

>

> Bill, is not baiting you. She really wants to know. And I do as

> well. And I hate to say it but if we are going to allocate resources

> to autism the same way we allocated resources for wounded veterans,

> homeless people, accident victims, special needs, etc. then we need

> to do a lot better. You have been very good at pointing out what

> autism isn't, and you've actually changed my thinking in some ways,

> in that regard.

Hm. I'd be interested in knowing the ways your thinking has changed.

Privately, if you want.

> We would love to know what you think it *is* and how

> the difficulties that arise from it would be properly addressed if

> you were in a position to design the algorithm. - Helen

Helen, I had to think a lot about answering (here). Because *you*

asked, here's my Short Answer.

My view:

" Autism " - defined by the best available criteria - is a

neurological/cognitive *atavism* of sorts, held in the human population

via mutation/selection balance. It confers some evolutionary benefits

*to the population*. ...While at the same time imposing some cost.

This is a simplified technical definition, with a precise meaning.

It does not 'speak' to characteristics of single individuals.

Certainly It does suggest that humankind could be divided into at least

two " varieties " :

One, the more numerous, we loosely call " normal " . The other,

perhaps 1-2% (or more?) of the world's population, even more loosely

called " autistic " .

I believe this because after a generation and more of research by

hundreds (thousands?) of teams, and the expenditure of many millions of

dollars, there is *no objectively useful* biological marker for autism.

Using an *autism as disability* model, there is yet *no* " necessary

and sufficient cause " for autism.

Therefor I reject the disability model of autism as untenable.

*Palpably* untenable, because it hasn't worked the way so many people hoped!

This *does not mean* autism is benign in all people - obviously it isn't.

" Autism as 'normal variety' " does allow for recognition and treatment

of various medical conditions which might be found in autistic persons.

...The exact *same* medical conditions which are seen in " normal " people.

These should be treated in the *same* " best practices " way. ...And

treated merely as co-morbid conditions, *not* as " features of autism " as

too often is the case now.

What about " behavioral issues " ? ...The single greatest concern to

parents, schools, and so on? IMO that's the diciest question of all,

and has no fast, easy answer.

But these could be, I believe *should be*, handled as educational

problems. In some places " these days " , that's happening.

Consider " full inclusion " to be the 21st century term akin to the

" racial integration " of the 20th. The objections are similar, as are

the " problems " for society at large.

I hope the practice spreads and - as before - succeeds to a useful

degree. Time will tell.

= = = = Please consider this only an Abstract for a much longer

work-in-progress. = = = =

- Bill ...AS; retired professional biologist/geneticist

--

WD " Bill " Loughman - Berkeley, California USA

http://home.earthlink.net/~wdloughman/wdl.htm

[Guest guest]

helen_foisy wrote:

> How do you allocate services and

>>>>> support for a part of our population that you see as just an

>>>>> extension as what we believe TODAY as normal.

[ snip ]

>> My view: " Autism " - defined by the best available criteria - is a

>> neurological/cognitive *atavism* of sorts, held in the human

>> population via mutation/selection balance. It confers some

>> evolutionary benefits *to the population*. ...While at the same

>> time imposing some cost.

[ snip ]

>> I believe this because after a generation and more of research by

> hundreds (thousands?) of teams, and the expenditure of many millions

> of dollars, there is *no objectively useful* biological marker for

> autism.

>

> Okay. Do you think there ever will be?

No, I don't. ...Not in the senses implied by today's " disability model "

of autism.

I *do expect* some biological markers one day will be found among *some*

groups of autistic people. But *if found*, I expect those won't be

markers for autism _per se_.

They'll identify *co-morbidities* of autism, much as Sickle-cell or

Tay-Sachs today are co-morbidities respectively for *some* Black or

Jewish " varieties " of humankind.

>

>> Using an *autism as disability* model, there is yet *no* " necessary

>> and sufficient cause " for autism.

>

>Okay. And if I understand what you have inferred in posts where you call

some of the research into question, you doubt there ever will be?

I guess you meant " implied " .

Yes, I do doubt there ever will be.

Because - in my view - the only " necessary and sufficient cause " of

autism is ordinary (and well understood) *evolutionary* processes.

....Which are the " cause " for all of us.

Please note an *important distinction*:

Autism as a recognizable physical/medical/neurological entity is one

thing.

Autism-like behaviors *as a co-morbidity* is quite another.

The former has no identified and agreed upon " cause " .

Often it can be recognized readily enough. But - like " porn " -

it has no agreed upon " satisfactory " definition.

The latter *might* accompany e.g. Fragile-X syndrome or Rett syndrome,

inter alia, but are *not* necessary and sufficient conditions for either

syndrome.

Both those are known and distinct chromosomal problems; sometimes

but not always accompanied by " autistic " traits. Both now are *defined*

by presence of the relevant chromosome abnormality - not by " traits " .

[ snip ]

>> = = = = Please consider this only an Abstract for a much longer

>> work-in-progress. = = = =

>

> Okay, I understand where you are coming from now, and I really

> appreciate your taking the time to put this to type. I look forward

> to seeing the final treatise. I understand it does take time and you

> will be meticulous about it. Hopefully it will be completed in both

> our lifetimes LOL.

Heh. Don't hold your breath.

- Bill ...AS, retired clinical/research geneticist

--

WD " Bill " Loughman - Berkeley, California USA

http://home.earthlink.net/~wdloughman/wdl.htm

[Guest guest]

In discussions of any disability model, it might be useful to look at the World Health Organization's work on defining disability. It was completed by 2001 after considerable revamping of a twenty year old definition which the editorial committee at WHO determined was out of date. In order to avoid definitions that were ethnocentric, the WHO for the first time introduced and approved considering the use of social context criteria to the definitions for ANY disabilities because of the "linguistic and distorting cultural load" imposed on certain disabilities' definitions by language and regional artifacts, world-wide. Such older criteria made the uniform reporting of prevalence figures of certain disabling conditions virtually meaningless. The US medical establishment and scientific community is NOT the most advanced community when it comes to this kind of thing. As a matter of relevance and for protecting long-defined turf, much of the discussion of disabilities in this country has been co-opted by powerful medical industry interest groups and deep-pockets lobbiests interested in keeping things sufficiently confused and the money flowing to "traditional" defining and research institutions. The WHO has definitely taken a "way out lead" while dealing with this phenomenon, and so far has resisted insistance of the US medical industry to stave off progress in coming to wider understandings about what disabilities are, and how they are to be dealt with as matters of public policy.I followed the development of what was then called the ICIDH-2 criteria closely at the time it was being vetted for last round of international comments before the WHO definition of disability was passed by the WHO International Congress in Geneva in 2001. Do consider starting your search on definitions of disability, by accessing a helpful site co-maintained by VERA and the US Department of Justice. The WHO's site isn't really that helpful as it's full of gobbledeegeek. http://www.accessingsafety.org/index.php/main/main_menu/understanding_disability/a_new_definition . Consider clicking on this page's links to a simplified but helpful history of the definition of disability at the links on evolving definitions, contrast of approaches, and benefits.

And then "go" from there.

N. Meyer

Re: Re: Roche has signed an agreement with Seaside Therapeutics to develop new treatment > >helen_foisy wrote: >> How do you allocate services and >>>>>> support for a part of our population that you see as just an >>>>>> extension as what we believe TODAY as normal. > [ snip ] >>> My view: "Autism" - defined by the best available criteria - is a >>> neurological/cognitive *atavism* of sorts, held in the human >>> population via mutation/selection balance. It confers some >>> evolutionary benefits *to the population*. ...While at the same >>> time imposing some cost. > [ snip ] >>> I believe this because after a generation and more of research by >> hundreds (thousands?) of teams, and the expenditure of many millions >> of dollars, there is *no objectively useful* biological marker for >> autism. >> >> Okay. Do you think there ever will be? > >No, I don't. ...Not in the senses implied by today's "disability model" >of autism. > >I *do expect* some biological markers one day will be found among *some* >groups of autistic people. But *if found*, I expect those won't be >markers for autism _per se_. > They'll identify *co-morbidities* of autism, much as Sickle-cell or >Tay-Sachs today are co-morbidities respectively for *some* Black or >Jewish "varieties" of humankind. > >> >>> Using an *autism as disability* model, there is yet *no* "necessary >>> and sufficient cause" for autism. >> >>Okay. And if I understand what you have inferred in posts where you call >some of the research into question, you doubt there ever will be? > >I guess you meant "implied". > >Yes, I do doubt there ever will be. > Because - in my view - the only "necessary and sufficient cause" of >autism is ordinary (and well understood) *evolutionary* processes. >...Which are the "cause" for all of us. > >Please note an *important distinction*: > Autism as a recognizable physical/medical/neurological entity is one >thing. > Autism-like behaviors *as a co-morbidity* is quite another. > >The former has no identified and agreed upon "cause". > Often it can be recognized readily enough. But - like "porn" - >it has no agreed upon "satisfactory" definition. > >The latter *might* accompany e.g. Fragile-X syndrome or Rett syndrome, >inter alia, but are *not* necessary and sufficient conditions for either >syndrome. > Both those are known and distinct chromosomal problems; sometimes >but not always accompanied by "autistic" traits. Both now are *defined* >by presence of the relevant chromosome abnormality - not by "traits". > > [ snip ] >>> = = = = Please consider this only an Abstract for a much longer >>> work-in-progress. = = = = >> >> Okay, I understand where you are coming from now, and I really >> appreciate your taking the time to put this to type. I look forward >> to seeing the final treatise. I understand it does take time and you >> will be meticulous about it. Hopefully it will be completed in both >> our lifetimes LOL. > >Heh. Don't hold your breath. > >- Bill ...AS, retired clinical/research geneticist > >-- >WD "Bill" Loughman - Berkeley, California USA >http://home.earthlink.net/~wdloughman/wdl.htm > > > > >------------------------------------ > > "We each have our own way of living in the world, together we are like a symphony. >Some are the melody, some are the rhythm, some are the harmony >It all blends together, we are like a symphony, and each part is crucial. >We all contribute to the song of life." > ...Sondra > > We might not always agree; but TOGETHER we will make a difference. > > ASPIRES is a closed, confidential, moderated list. >Responsibility for posts to ASPIRES lies entirely with the original author. > Do NOT post mail off-list without the author's permission. > When in doubt, please refer to our list rules at: > http://www.aspires-relationships.com/info_rules.htm > ASPIRES ~ Climbing the mountain TOGETHER > http://www.aspires-relationships.com >