Re: help me understand

[Guest guest]

Hi Jeanie,

My reply is long, no one has to read through it if ya don't want to, but what

follows is my reasoning for recommending Dr. Seigel's book, though, with a

caveat: it does not paint the brightest picture of high functioning autism, and

yes there is newer and better stuff out there. But still, it's one point of

view, and I believe it has merit.

Bryna Siegel is considered to be in the California Government's pocket, and is

" notorious " for under-diagnosing ASDs. So, straight off, you have to understand

that she is NOT writing about most of the adult AS membership in this group, she

is speaking to a much, much lower functioning ASD cohort. Folks like me wouldn't

even register in her definition of ASDs. That isn't apparent when one picks up a

copy of the book, which is, in its outlook, probably " dated " today, though

advice for supports, etc. remains relevant, and has been updated.

The reason *why* its outlook is " outdated " today is that, because of books like

hers, and the advocacy and awareness that has come about over the past 18 years

( " our " very own Newland is a big part of that) the prognosis for ASD's is

much, much brighter now. Wasn't always so.

" The World of the Autistic Child " was written for parents of young HFA people

like my late brother Mike. He was thought to be mildly retarded at one time,

until testing revealed he had a surprisingly good IQ. Thereafter he was

considered to be " lazy " and " emotionally disturbed " as a result of my parents

marriage breakdown. Any " intervention " he received was terribly inappropriate.

He might have been better off to *be* MR, he might have been treated with more

compassion.

As a young person myself (age 22) I sought to have him assessed when he was 17,

and two psychiatrists, without knowledge of HHAs at that time (it was 1977) did

peg his traits very accurately. They were the first to suggest that he was not

disturbed or schizophrenic. But his perception of the world, his socialization,

remained a mystery.

The psychiatrists found a life skills training program, but my brother was

placed with mentally retarded adults who often had better executive functioning

skills then he did. (We on the spectrum are often challenged in the areas of

executive functioning.) He abandoned the program before he completed it. Too,

too bad, but, I understood his frustration.

Had my brother been born three or four decades later, and seen by Dr. Siegel, he

would certainly have been identified as having an ASD - no ambiguity there - the

rest of her tome fit him to a " T " - and we (my younger sisters and I)could have

found better programs for him.

I came across Dr. Siegel's book 15 years after his very premature death. There,

finally, in type, was an explanation, and suggested course of action for young

people like him. I wish such a book had existed when my parents and my brother's

teachers and doctors could have read it, so that they may have " woke up and

smelled the coffee " before it was too late.

The book is dated, now, of course, but at the time it was written, there was

little information out there for parents. Bryna Siegel also co-authored another

book " What About Me? Siblings of Developmentally Disabled Children " (1994)

http://www.amazon.com/What-About-Me-Bryna-Siegel/dp/0306446502 at a time when

support and literature for siblings (who often assumed the caregiver role as my

sisters and I did) was non-existent.

Dr. Siegel isn't a big fan of ABA (applied behavioral analysis) and this puts

her at odds with many parents, and yet, ironically, places her in the same camp

with the autism self-advocacy movement. But, no matter, her credentials are

continually attacked. However, I feel she paints a very realistic picture of the

end point for many individuals with autism (as she defines it - the more

profound type) *if they don't receive the proper supports* as children and young

adults.

When one reads this book, you have to keep in mind the times that it was written

in, and the fact that the author was working with lower functioning ASDs. You

have to consider too that there are many lost ASD older adults who are living

out the bleak reality she describes in the book.

I can understand that this book isn't for everybody. One friend with an HFA son,

who was in his late teens when she read the book, found it " depressing. " The son

(now an adult) has the good fortune of having a very large extended family who

can look after his needs well past the age where most modern families would be

able to continue to provide him with a supportive environment without taxpayer

funded assistance.

Now, in my world (I'm old school) extended families that are supportive of each

other *should* be the norm. However, in North American society in particular,

families are highly mobile, and often single parent/blended families, and the

role of " support " usually falls to the overburdened educational system. Then,

when these children are adults, they either flounder, or, if they are fortunate

to live in an enlightened state or province, they may be able to access taxpayer

funded support.

Dr. Siegel's books are just a few of many, many resources out there> Hers is a

less common (dare I say less politically correct as it pertains to the autistic

community - of which I consider myself a member too) and with a far less popular

point of view. You take what you need and you ignore the rest.

But I am glad you brought this up Jeannie, so that if members do decide to read

it, they will understand it's a very different and uncomfortable picture that

Dr. Siegel paints. I believe it is also the reality for some older adults with

ASDs who continue to struggle to live independently. With the right attitude and

supports, it does not have to be the reality for today's ASD children.

- Helen, 56, self dx'd AS, dx'd ADD