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

[Guest guest]

Good morning Bill,

I realized my question was a tall order and not one that you may be able to

answer fully right away but I thank you for your response. I will reply to this

post when I'm done in the garden. We have a severe thunderstorm watch in effect

so I wanna protect my precious peppers (all kinds of hot ones mmmmmm back

soon!

- Helen

[Guest guest]

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.

Hi Bill,

I don't mind sharing with the list, but since the response will be lengthy, I

pondered whether to bore members or not. But I suppose folks have the option to

skip over this post

Over the years, before and after my " discovery " of high functioning autism

(1996) and subsequently AS (1997) my thinking regarding the challenges that

reasonably functional folks - and not so functional folks - of the autistic

persuasion, has almost come around full circle.

Prior to learning about the existence of high functioning autism, I was

certainly on the " nurture " side of the debate as it pertains to folks with

challenges which, unknown to me at that time, had another layer of complication

- autism. After learning about high functioning autism, I thought " aha!!! " and

then my opinion on the challenges was heavily weighted on the " nature " side.

Now I'm back to the " nurture " side - NOT in the sense of blaming " refrigerator

mothers " NO! - but environmental effects - injuries, toxins, etc., and

psychological ones, for the *difficulties* that autistics with *normal

intelligence* may have. These things do not *cause* the person to be autistic -

they are born that way - but can contribute in a positive or negative way, just

as they do with non spectrum folks. Some of the comments and articles you have

made over the years have supported that evolution in my thinking. That aside,

any opinion I've shared over the years hasn't changed. There are tendencies that

folks on the autistic side of the spectrum have that *can* cause a *lot* of

difficulty, if not properly channeled and trained early. Just as there are

tendencies that folks on the non spectrum side of the spectrum have, etc.

But as I think you allude to often, it's not a case of putting things in a neat

little box and saying well it's either this or this. Finding out that a loved

one has Aspergers is NOT the " smoking gun " that folks hope it might be. It's

just another piece of the puzzle, albeit a significant one.

I also feel that sometimes knowledge of AS may be a hindrance if used

improperly, which unfortunately it often is. If all the person's negative

behaviors are attributed to AS, AS in a sense then excuses the behaviors and may

allow them to continue, when in fact the person may happen to be a narcissist,

sociopath, chronic liar, philanderer or con man. A label can also be a detriment

if even the person's *good* qualities are attributed to their neurological

makeup. For example (we used to see this a lot more a decade ago) " All AS are

honest because they make poor liars " the inference being that the only reason

why they are honest is they can't get away with lying. The fact notwithstanding

that AS can lie like everyone else, the inference reduces the person's good

qualities to a behavior or automation, instead of a special inner quality that

that individual possesses. The word " automation " used in that context was one

that you introduced me to, got me thinking fer shure

Recall that my first exposure to high functioning autism (though I did not know

what it was then) was my late brother, who was born four and a half years after

me. As I have shared here, his life was short, difficult, sad, and yet, he

stands in my siblings and my mind as a testament to the goodness of the soul.

Despite what he went through, he was kind, considerate and - yes - empathetic.

Yes, he made many social mis-steps but was always remorseful and eager to repair

once he understood what he had done. He remembered every special event and

remembered the things people liked.

My other early exposure to autism was a mute and often violent five year old boy

whose parents were trying a (since discredited) method of intervention called

psychomotor patterning. I was a volunteer and in my mid teens. And wow, did I

ever note the similarities between this non verbal boy and my own high

functioning but still severely impaired brother. As the boy reached his teens,

his diminutive parents were no longer able to manage him physically, and he was

institutionalized at age 13.

Having grown up witnessing the suffering of my brother and this little boy and

his parents, you can imagine that my impression of autism in the early days of

discovery of high functioning autism was not entirely positive. It was more like

a huge adversity to be overcome, like blindness, or being born without legs.

Without going on and on forever here (I will spare y'all until another day, LOL)

my thinking has changed again. And you are a part of that, Bill.

>

> 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.

I agree! Temple Grandin has said too.

> This is a simplified technical definition, with a precise meaning. It does

not 'speak' to characteristics of single individuals.

Lots said there in a few words! Notwithstanding what you go on to say below,

it's not as simple as either a person is autistic or they aren't, and this

explains everything. So many factors come into play.

>

> 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 like the qualifier " at least " (two varieties)

>

> 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?

> 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?

> Therefor I reject the disability model of autism as untenable.

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

Not agreeing or disagreeing here. I have insufficient knowledge myself to have a

firm opinion on this one, but find this very interesting.

>

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

Okay, I am glad you clarified that. I have difficulty with the stance of the

" autism is wonderful " when I think back to that poor little boy and his parents.

Note I'll say difficulty, as, my thinking is changing again about this. It's

sooo complex. It is likely in his case that he had multiple issues including a

very low IQ, gut issues, was probably in a LOT of pain, he had acutely good

hearing which must have made all sound painful. Who knows " why " he, and my

brother suffered so. One day we will all know I hope. I do not oppose research

that would try to lessen the suffering of people like that little boy, and yet

... we all know that " research " doesn't always happen with a humanitarian agenda.

>

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

various medical conditions which might be found in autistic persons.

I am glad that you clarified that. I agree.

> ...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.

Okay, understood. My thinking has evolved on this one too, influenced by folks

like you.

>

> 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.

Well I hope so. You have taken a " focus on the positive stance " and yes, in the

big scheme of things, humanity as a whole is making progress, but at the moment

it's a two steps forward, one step back kind of progress.

>

> = = = = 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.

Helen

[Guest guest]

PS Bill, sorry, I really meant to do more snipping before I hit send but my cat

jumped the gun.

- Helen