Re: NYT OP-ED, Autism's Parent Trap

[Guest guest]

Government policy is to blame for the autism itself!!!!

NYT OP-ED, Autism's Parent Trap

Autism's Parent Trap By CAMMIE McGOVERN Published: June 5, 2006 http://www.nytimes.com/2006/06/05/opinion/05mcgovern.html?_r=1 & oref=sloginIN recent weeks, three stories have hit the news with grimly similar plotlines: parents accused of killing their autistic children. On April 12, in Hull, England, Alison Davies and her 12-year-old son, , fell to their deaths from a bridge over the River Humber, in an apparent murder-suicide. (A note was found in Ms. Davies's kitchen.) On May 14, in Albany, Ore., DeGroot, 19, was trapped inside a burning apartment. He died in a Portland hospital five days later, and his parents are charged with murder, accused of locking their son in the apartment alone. And on the same May Sunday, in Morton, Ill., Dr. McCarron admitted to the police that she had, the day before, suffocated her 3-year-old daughter, , with a plastic garbage bag. Family and friends have come to the defense of two of the parents involved. " was the focus and the purpose of her life," Alison Davies's sister told The Sunday Times, calling the double bridge jump "an act of love." A friend of Dr. McCarron's — a fellow member of her local autism-support group — told a columnist for The Journal Star of Peoria, Ill., that Dr. McCarron had devoted her life to . "She never took a night off," the friend said. "She read every book. She was trying so hard, pursuing every lead." Chilling words to any parent of a child with autism who remembers, as I do, reading every book, pursuing every lead and never taking a night off — because autism feels like a war you re-arm yourself nightly to wage. The comments suggest the parents may have been trying too hard. Perhaps they were frustrated that their efforts did not lead to greater improvement in their children. That would not be surprising, because dramatic improvement is what too many parents are led to expect.Clearly there is a message in the recent deaths about the urgent need to increase support for the rising number of families struggling with autism. Having an autistic child is estimated to cost a family $10,000 to $50,000 a year in out-of-pocket expenses for medical treatment, therapy and education. With 50 new diagnoses of autism in this country every day, support services are already too stretched to meet the need.But as much as I'd like to fault government policy, I suspect it is not entirely to blame. There's another issue that hits closer to home and is harder for most parents of autistic children to be candid about. When your child is initially diagnosed, you read the early bibles of hope: "Let Me Hear Your Voice," "Son-Rise" and other chronicles of total recovery from autism. Hope comes from a variety of treatments, but the message is the same: If you commit all your time, your money, your family's life, recovery is possible. And who wouldn't do almost anything — mortgage a home, abandon a career or move to be closer to doctors or schools — to enable an autistic child to lead a normal life? Now, as the mother of a 10-year-old, I will say what no parents who have just discovered their child is autistic want to hear, but should, at least from one person: I've never met a recovered child outside the pages of those old books. Not that it doesn't happen; I'm sure it does. But it's extraordinarily rare and it doesn't happen the way we once were led to believe. According to her friend, Dr. McCarron was in despair in recent weeks because 's language had regressed markedly. Every parent of a child on the autism spectrum knows this feeling: I've done everything possible; why isn't he better? The answer is simple: Because this is the way autism works. There are roadblocks in the brain, mysterious and unmovable. In mythologizing recovery, I fear we've set an impossibly high bar that's left the parents of a half-million autistic children feeling like failures.I don't mean to sound pessimistic about the prospects for autistic children. On the contrary, I see greater optimism in delivering a more realistic message to families: Children are not cured, but they do get better. And better can be remarkable. At 10, my son is a far cry from the toddler who melted down when the sand was the wrong texture for drizzling. These days he embraces adventure, rides his bike, and repeats any story he tells five or six times. I remember thinking maybe we'd laugh someday at the lengths we went to when we were teaching him language — the flashcards, the drills, the repetitions. Now he's 10 and talking at last in his own quirky ways, and we don't laugh about the drills (though we laugh about plenty of other things). Language is a victory. So is connection and purposeful play. So are the simpler things: a full night's sleep, a tantrum-free day.Parents working toward these goals will one day be surprised and delighted by their children's funny new obsessions, odd fixations, and tentative but extraordinary connections with other children. Being more realistic from the start might make it possible to enjoy the journey and to see it for what it is: helping a child who will always function differently to communicate better and feel less frustrated. To aim for full recovery — for the person your child might have been without autism — is to enter a dangerous emotional landscape. For three children, the disconnect between parental determination and limited progress may have been lethal.

[Guest guest]

" Being more realistic from the start might make it possible to

enjoy

> the journey and to see it for what it is: helping a child who will

> always function differently to communicate better and feel less

frustrated. "

Enjoy the journey??? Excuse me......

Geez, the chronic constipation and consequent trips to the hospital,

major allergy issues, chronic headaches, pain and suffering...all a

little trip like to Disyneyland or something.

Who has the right to tell any parent how they should address their

child's problems?

These kids are sick!!!

We should just sit back and enjoy the journey.

Ahh, how sweet.

Idiot.

>

> Autism's Parent Trap

>

> By CAMMIE McGOVERN

> Published: June 5, 2006

> http://www.nytimes.com/2006/06/05/opinion/05mcgovern.html?

> _r=1 & oref=slogin

>

> IN recent weeks, three stories have hit the news with grimly

similar

> plotlines: parents accused of killing their autistic children.

>

> On April 12, in Hull, England, Alison Davies and her 12-year-old

> son, , fell to their deaths from a bridge over the River

Humber,

> in an apparent murder-suicide. (A note was found in Ms. Davies's

> kitchen.) On May 14, in Albany, Ore., DeGroot, 19, was

> trapped inside a burning apartment. He died in a Portland hospital

> five days later, and his parents are charged with murder, accused

of

> locking their son in the apartment alone. And on the same May

> Sunday, in Morton, Ill., Dr. McCarron admitted to the police

> that she had, the day before, suffocated her 3-year-old daughter,

> , with a plastic garbage bag.

>

> Family and friends have come to the defense of two of the parents

> involved. " was the focus and the purpose of her life, " Alison

> Davies's sister told The Sunday Times, calling the double bridge

> jump " an act of love. "

>

> A friend of Dr. McCarron's — a fellow member of her local autism-

> support group — told a columnist for The Journal Star of Peoria,

> Ill., that Dr. McCarron had devoted her life to . " She

> never took a night off, " the friend said. " She read every book.

She

> was trying so hard, pursuing every lead. "

>

> Chilling words to any parent of a child with autism who remembers,

> as I do, reading every book, pursuing every lead and never taking

a

> night off — because autism feels like a war you re-arm yourself

> nightly to wage. The comments suggest the parents may have been

> trying too hard. Perhaps they were frustrated that their efforts

did

> not lead to greater improvement in their children. That would not

be

> surprising, because dramatic improvement is what too many parents

> are led to expect.

>

> Clearly there is a message in the recent deaths about the urgent

> need to increase support for the rising number of families

> struggling with autism. Having an autistic child is estimated to

> cost a family $10,000 to $50,000 a year in out-of-pocket expenses

> for medical treatment, therapy and education. With 50 new

diagnoses

> of autism in this country every day, support services are already

> too stretched to meet the need.

>

> But as much as I'd like to fault government policy, I suspect it

is

> not entirely to blame. There's another issue that hits closer to

> home and is harder for most parents of autistic children to be

> candid about. When your child is initially diagnosed, you read the

> early bibles of hope: " Let Me Hear Your Voice, " " Son-Rise " and

other

> chronicles of total recovery from autism. Hope comes from a

variety

> of treatments, but the message is the same: If you commit all your

> time, your money, your family's life, recovery is possible.

>

> And who wouldn't do almost anything — mortgage a home, abandon a

> career or move to be closer to doctors or schools — to enable an

> autistic child to lead a normal life?

> Now, as the mother of a 10-year-old, I will say what no parents

who

> have just discovered their child is autistic want to hear, but

> should, at least from one person: I've never met a recovered child

> outside the pages of those old books. Not that it doesn't happen;

> I'm sure it does. But it's extraordinarily rare and it doesn't

> happen the way we once were led to believe.

>

> According to her friend, Dr. McCarron was in despair in recent

weeks

> because 's language had regressed markedly. Every parent

of

> a child on the autism spectrum knows this feeling: I've done

> everything possible; why isn't he better? The answer is simple:

> Because this is the way autism works. There are roadblocks in the

> brain, mysterious and unmovable. In mythologizing recovery, I fear

> we've set an impossibly high bar that's left the parents of a half-

> million autistic children feeling like failures.

>

> I don't mean to sound pessimistic about the prospects for autistic

> children. On the contrary, I see greater optimism in delivering a

> more realistic message to families: Children are not cured, but

they

> do get better.

[Guest guest]

Can't believe you didn't comment on that ?

From: " Barry" <kevin.barry.gr@...>Reply- EOHarm EOHarm Subject: NYT OP-ED, Autism's Parent TrapDate: Mon, 05 Jun 2006 15:37:47 -0000>Autism's Parent Trap>>By CAMMIE McGOVERN>Published: June 5, 2006>http://www.nytimes.com/2006/06/05/opinion/05mcgovern.html?>_r=1 & oref=slogin>>IN recent weeks, three stories have hit the news with grimly similar>plotlines: parents accused of killing their autistic children.>>On April 12, in Hull, England, Alison Davies and her 12-year-old>son, , fell to their deaths from a bridge over the River Humber,>in an apparent murder-suicide. (A note was found in Ms. Davies's>kitchen.) On May 14, in Albany, Ore., DeGroot, 19, was>trapped inside a burning apartment. He died in a Portland hospital>five days later, and his parents are charged with murder, accused of>locking their son in the apartment alone. And on the same May>Sunday, in Morton, Ill., Dr. McCarron admitted to the police>that she had, the day before, suffocated her 3-year-old daughter,>, with a plastic garbage bag.>>Family and friends have come to the defense of two of the parents>involved. " was the focus and the purpose of her life," Alison>Davies's sister told The Sunday Times, calling the double bridge>jump "an act of love.">>A friend of Dr. McCarron's — a fellow member of her local autism->support group — told a columnist for The Journal Star of Peoria,>Ill., that Dr. McCarron had devoted her life to . "She>never took a night off," the friend said. "She read every book. She>was trying so hard, pursuing every lead.">>Chilling words to any parent of a child with autism who remembers,>as I do, reading every book, pursuing every lead and never taking a>night off — because autism feels like a war you re-arm yourself>nightly to wage. The comments suggest the parents may have been>trying too hard. Perhaps they were frustrated that their efforts did>not lead to greater improvement in their children. That would not be>surprising, because dramatic improvement is what too many parents>are led to expect.>>Clearly there is a message in the recent deaths about the urgent>need to increase support for the rising number of families>struggling with autism. Having an autistic child is estimated to>cost a family $10,000 to $50,000 a year in out-of-pocket expenses>for medical treatment, therapy and education. With 50 new diagnoses>of autism in this country every day, support services are already>too stretched to meet the need.>>But as much as I'd like to fault government policy, I suspect it is>not entirely to blame. There's another issue that hits closer to>home and is harder for most parents of autistic children to be>candid about. When your child is initially diagnosed, you read the>early bibles of hope: "Let Me Hear Your Voice," "Son-Rise" and other>chronicles of total recovery from autism. Hope comes from a variety>of treatments, but the message is the same: If you commit all your>time, your money, your family's life, recovery is possible.>>And who wouldn't do almost anything — mortgage a home, abandon a>career or move to be closer to doctors or schools — to enable an>autistic child to lead a normal life?>Now, as the mother of a 10-year-old, I will say what no parents who>have just discovered their child is autistic want to hear, but>should, at least from one person: I've never met a recovered child>outside the pages of those old books. Not that it doesn't happen;>I'm sure it does. But it's extraordinarily rare and it doesn't>happen the way we once were led to believe.>>According to her friend, Dr. McCarron was in despair in recent weeks>because 's language had regressed markedly. Every parent of>a child on the autism spectrum knows this feeling: I've done>everything possible; why isn't he better? The answer is simple:>Because this is the way autism works. There are roadblocks in the>brain, mysterious and unmovable. In mythologizing recovery, I fear>we've set an impossibly high bar that's left the parents of a half->million autistic children feeling like failures.>>I don't mean to sound pessimistic about the prospects for autistic>children. On the contrary, I see greater optimism in delivering a>more realistic message to families: Children are not cured, but they>do get better.>>And better can be remarkable. At 10, my son is a far cry from the>toddler who melted down when the sand was the wrong texture for>drizzling. These days he embraces adventure, rides his bike, and>repeats any story he tells five or six times. I remember thinking>maybe we'd laugh someday at the lengths we went to when we were>teaching him language — the flashcards, the drills, the repetitions.>Now he's 10 and talking at last in his own quirky ways, and we don't>laugh about the drills (though we laugh about plenty of other>things). Language is a victory. So is connection and purposeful>play. So are the simpler things: a full night's sleep, a tantrum->free day.>>Parents working toward these goals will one day be surprised and>delighted by their children's funny new obsessions, odd fixations,>and tentative but extraordinary connections with other children.>Being more realistic from the start might make it possible to enjoy>the journey and to see it for what it is: helping a child who will>always function differently to communicate better and feel less>frustrated. To aim for full recovery — for the person your child>might have been without autism — is to enter a dangerous emotional>landscape. For three children, the disconnect between parental>determination and limited progress may have been lethal.>>>>>>>>

[Guest guest]

still percolating Heidi.

[Guest guest]

No so easy for me, either. This is so wrong-headed and ignorant, I

didn't where to start. I'm going to title this piece in the

newsletter as

" Hope that Kills? "

We are just going to have to make up our minds. Either we're

refridgerator moms or hope-hysterical homicial parents. When

disappointment strikes from irrational recovery fetish, what else can

you do but kill your kid? (that's sarcasm, for those of you in Des

Moines.)

Lenny

Can't believe you didn't comment on that ?

From: " Barry " <kevin.barry.gr@...>

Reply- EOHarm

EOHarm

Subject: NYT OP-ED, Autism's Parent Trap

Date: Mon, 05 Jun 2006 15:37:47 -0000

>Autism's Parent Trap

>

>By CAMMIE McGOVERN

>Published: June 5, 2006

>http://www.nytimes.com/2006/06/05/opinion/05mcgovern.html?

>_r=1 & oref=slogin

>

>IN recent weeks, three stories have hit the news with grimly similar

>plotlines: parents accused of killing their autistic children.

[Guest guest]

Lenny, I hope you will print in your newsletter (and someone prints

here) exactly who's email address gets to receive our wrath on this

article. Don't forget to include the public editor's address:

public@....

[Guest guest]

Short about $20. See, at least some of my jokes are old.

Actually, I am short, but not little (Holly wouldn't know.)

Lenny

>

> Hey - a punk band re-did this song in the 80's. (Same time period

that Sid

> Vicious did " My Way " his way.)

>

> I forget the artist but maybe we could refer to that one so Lenny

does not

> feel so damn old!

>

>

>

>

>

> He he,

>

> A Jeff's mom

>

>

>

>

>

> _____

>

> From: EOHarm [mailto:EOHarm ] On

Behalf Of

> Holly Bortfeld

> Sent: Monday, June 05, 2006 4:30 PM

> EOHarm

> Subject: RE: Re: NYT OP-ED, Autism's Parent Trap

>

> Peggy freakin' Lee??? God, you are old!

>

>

>

> _____

>

> From: EOHarm [mailto:EOHarm ] On

Behalf Of

> Kerbob

> Sent: Monday, June 05, 2006 6:46 PM

> EOHarm

> Subject: Re: Re: NYT OP-ED, Autism's Parent Trap

>

>

>

> Lenny,

>

>

>

> I am 100% positive that there are many untold factors in this type

of stuff.

> When a sixteen year old trench coat wearing puker sprays bullets

into his

> classmates or family members we never read toxicology reports. We never

> examine the drugs these kids are on. Yet the rumblings tell us that

Pharma

> is batting 1.000 when it comes to inexplicable school shootings and

> over-stressed, burned out moms senselessly killing their brood.

>

>

>

> I mean come on I read a few weeks ago on some drug information site one

> particular semi-common prescription drug side effect was " dreams of

snakes " .

> Those are side effects. Many side effects we see and are easy to

understand

> because they are outward. Others are inward and we never know.

>

>

>

> Should we put on the old Peggy Lee record and sign:

>

>

>

> " Is that all there is, is that all there is

> If that's all there is my friends, then let's keep dancing

> Let's break out the booze and have a ball

> If that's all there is

>

>

>

> NYT OP-ED, Autism's Parent Trap

> Date: Mon, 05 Jun 2006 15:37:47 -0000

> >Autism's Parent Trap

> >

> >By CAMMIE McGOVERN

> >Published: June 5, 2006

> >http://www.nytimes.com/2006/06/05/opinion/05mcgovern.html?

> >_r=1 & oref=slogin

> >

> >IN recent weeks, three stories have hit the news with grimly

similar

> >plotlines: parents accused of killing their autistic children.

>

>

>

>

>

>

>

>

> _____

>

> Talk is cheap. Use Messenger to make PC-to-Phone calls. Great

>

<http://us.rd./mail_us/taglines/postman7/*http:/us.rd./evt

> =39666/*http:/messenger.> rates starting at 1¢/min.

>

[Guest guest]

Thanks for sticking up, Maurine,

It comes with doing high-profile advocacy. The community sees you as

a public nose everyone gets to pick on. -sigh-

Lenny

>

> Hey, you guys, leave Lenny alone. You're just jealous cause you

weren't around for " Gidget Does Hawaii and How Much is That Doggie in

the Window. Maurine

[Guest guest]

Oh great. Now I'm going to have the reputation of being the only

person alive able to gross-out Holly Bortfeld.

> >

> > Hey, you guys, leave Lenny alone. You're just jealous cause you

> weren't around for " Gidget Does Hawaii and How Much is That Doggie in

> the Window. Maurine

>

[Guest guest]

Unfrickingbelievable! Who gave her the right to speak on my behalf?

Or yours for that matter? Like she needs to educate US! Her child

is only 10 and now she has the gift of wisdom? Please! You can't

get any more self-righteous than her. Now for those of you who are

curing and have cured their children, be warned - You are giving too

much hope to the ENTIRE autistic parenting population and just

watch, you too, will be blamed for any future (God help us)

murders. I agree with where's her email address - now it's

our turn to give her the gift of our wisdom!

Sally

>

> Autism's Parent Trap

>

> By CAMMIE McGOVERN

> Published: June 5, 2006

> http://www.nytimes.com/2006/06/05/opinion/05mcgovern.html?

> _r=1 & oref=slogin

>

> IN recent weeks, three stories have hit the news with grimly

similar

> plotlines: parents accused of killing their autistic children.

>

> On April 12, in Hull, England, Alison Davies and her 12-year-old

> son, , fell to their deaths from a bridge over the River

Humber,

> in an apparent murder-suicide. (A note was found in Ms. Davies's

> kitchen.) On May 14, in Albany, Ore., DeGroot, 19, was

> trapped inside a burning apartment. He died in a Portland hospital

> five days later, and his parents are charged with murder, accused

of

> locking their son in the apartment alone. And on the same May

> Sunday, in Morton, Ill., Dr. McCarron admitted to the police

> that she had, the day before, suffocated her 3-year-old daughter,

> , with a plastic garbage bag.

>

> Family and friends have come to the defense of two of the parents

> involved. " was the focus and the purpose of her life, " Alison

> Davies's sister told The Sunday Times, calling the double bridge

> jump " an act of love. "

>

> A friend of Dr. McCarron's — a fellow member of her local autism-

> support group — told a columnist for The Journal Star of Peoria,

> Ill., that Dr. McCarron had devoted her life to . " She

> never took a night off, " the friend said. " She read every book.

She

> was trying so hard, pursuing every lead. "

>

> Chilling words to any parent of a child with autism who remembers,

> as I do, reading every book, pursuing every lead and never taking

a

> night off — because autism feels like a war you re-arm yourself

> nightly to wage. The comments suggest the parents may have been

> trying too hard. Perhaps they were frustrated that their efforts

did

> not lead to greater improvement in their children. That would not

be

> surprising, because dramatic improvement is what too many parents

> are led to expect.

>

> Clearly there is a message in the recent deaths about the urgent

> need to increase support for the rising number of families

> struggling with autism. Having an autistic child is estimated to

> cost a family $10,000 to $50,000 a year in out-of-pocket expenses

> for medical treatment, therapy and education. With 50 new

diagnoses

> of autism in this country every day, support services are already

> too stretched to meet the need.

>

> But as much as I'd like to fault government policy, I suspect it

is

> not entirely to blame. There's another issue that hits closer to

> home and is harder for most parents of autistic children to be

> candid about. When your child is initially diagnosed, you read the

> early bibles of hope: " Let Me Hear Your Voice, " " Son-Rise " and

other

> chronicles of total recovery from autism. Hope comes from a

variety

> of treatments, but the message is the same: If you commit all your

> time, your money, your family's life, recovery is possible.

>

> And who wouldn't do almost anything — mortgage a home, abandon a

> career or move to be closer to doctors or schools — to enable an

> autistic child to lead a normal life?

> Now, as the mother of a 10-year-old, I will say what no parents

who

> have just discovered their child is autistic want to hear, but

> should, at least from one person: I've never met a recovered child

> outside the pages of those old books. Not that it doesn't happen;

> I'm sure it does. But it's extraordinarily rare and it doesn't

> happen the way we once were led to believe.

>

> According to her friend, Dr. McCarron was in despair in recent

weeks

> because 's language had regressed markedly. Every parent

of

> a child on the autism spectrum knows this feeling: I've done

> everything possible; why isn't he better? The answer is simple:

> Because this is the way autism works. There are roadblocks in the

> brain, mysterious and unmovable. In mythologizing recovery, I fear

> we've set an impossibly high bar that's left the parents of a half-

> million autistic children feeling like failures.

>

> I don't mean to sound pessimistic about the prospects for autistic

> children. On the contrary, I see greater optimism in delivering a

> more realistic message to families: Children are not cured, but

they

> do get better.

>

> And better can be remarkable. At 10, my son is a far cry from the

> toddler who melted down when the sand was the wrong texture for

> drizzling. These days he embraces adventure, rides his bike, and

> repeats any story he tells five or six times. I remember thinking

> maybe we'd laugh someday at the lengths we went to when we were

> teaching him language — the flashcards, the drills, the

repetitions.

> Now he's 10 and talking at last in his own quirky ways, and we

don't

> laugh about the drills (though we laugh about plenty of other

> things). Language is a victory. So is connection and purposeful

> play. So are the simpler things: a full night's sleep, a tantrum-

> free day.

>

> Parents working toward these goals will one day be surprised and

> delighted by their children's funny new obsessions, odd fixations,

> and tentative but extraordinary connections with other children.

> Being more realistic from the start might make it possible to

enjoy

> the journey and to see it for what it is: helping a child who will

> always function differently to communicate better and feel less

> frustrated. To aim for full recovery — for the person your child

> might have been without autism — is to enter a dangerous emotional

> landscape. For three children, the disconnect between parental

> determination and limited progress may have been lethal.

>

[Guest guest]

This whole " rx made me do it " rationale of murder has been difficult

for me to take. Primarily, because I've been on an SSRI for over a

year, zoloft. I've not axe murdered anyone yet, though I've wanted to

a few pharmaceutical lobbyists -- extreme sarcasm there, please do not

take as a real threat, lol.

I do know the first couple of months I began zoloft, I did feel this

weird, almost unexplainable fluttering of chaotic thoughts. I guess it

could most closely be described as voices, though not clear in meaning

or anything else. And, that feeling did go away. I also felt slightly

more spontaneous, as if could possibly get any more so, lol. At times,

I've almost wondered if I was experiencing a hypo-mania state.

I've thought a lot about these experiences, and wondered if the dosage

were doubled if I'd actually hear voices telling me to do things, or

be so spontaneous or manic I'd completely go over the edge. Maybe

that's what's going on in some of the cases? Maybe these people are

taking way too much? Or, maybe they don't have the physical issues for

which these drugs can help.

I began taking it after about a year of constant anxiety. It was more

a body response than actual mental issues. Like, I would feel on edge

for three days over something as silly as a note from the kids'

teachers. I could tell myself it ws no big deal and believe it was no

big deal, yet my body wouldn't listen. Zoloft has been great for me in

that sense. It's a miserable feeling to feel adrenalin 24/7.

Counter this with newspaper reports of 17 yr olds being given SSRIs

because their family moved cross-country their senior year of high

school, etc. I personally would never warrant drugs for a situational

issue like that. What teen wouldn't be upset? Would not a good

counselor be far better than a drug? It's ignoring the root and

attempting to dull the problem. Drugs should be used only to address a

physiological issue that has no alternative solution.

If you ask me, all these drugs should be limited to a psychiatric

consulation and only refilled with routine psychiatric follow-ups. My

MD spent less than 5 minutes before giving me the prescrip. Yeah, I

was glad I didn't get the hassle, but he didn't know squat about my

mental health state and refused to check my situation at all. Sure,

there are plenty of bad psychiatrists out there, but it might do a

little to derail the scrip pad gone wild.

Debi

>

> Lenny,

>

> I am 100% positive that there are many untold factors in this type

of stuff. When a sixteen year old trench coat wearing puker sprays

bullets into his classmates or family members we never read toxicology

reports. We never examine the drugs these kids are on. Yet the

rumblings tell us that Pharma is batting 1.000 when it comes to

inexplicable school shootings and over-stressed, burned out moms

senselessly killing their brood.

>

> I mean come on I read a few weeks ago on some drug information site

one particular semi-common prescription drug side effect was " dreams

of snakes " . Those are side effects. Many side effects we see and are

easy to understand because they are outward. Others are inward and we

never know.

>

> Should we put on the old Peggy Lee record and sign:

>

> " Is that all there is, is that all there is

> If that's all there is my friends, then let's keep dancing

> Let's break out the booze and have a ball

> If that's all there is

>

>

[Guest guest]

Nope, but my granny was.

<g>

Debi

>

> Hey, you guys, leave Lenny alone. You're just jealous cause you

weren't around for " Gidget Does Hawaii and How Much is That Doggie in

the Window. Maurine

>

>

[Guest guest]

Uh, excuse me, but there are others here besides Lenny who are

" mature " enough to recall that the correct title was " Gidget Goes

Hawaiian. "

" Gidget Does Hawaii " sounds like one of those movies that was only

shown in theatres on the " other side of town. "

Wade " my hair may be turning gray, but at least it stayed thick " Rankin

> >

> > Hey, you guys, leave Lenny alone. You're just jealous cause you

> weren't around for " Gidget Does Hawaii and How Much is That Doggie in

> the Window. Maurine

> >

> >

>

[Guest guest]

Actually Sally I'm glad this was printed, otherwise we may have

never seen such an opinon. Yes too it is essential that we send our

view to the NY Times as well as Ms. Mc Govern. I'd urge folks to do

so in a way that will express how you feel about your child, how you

feel about such portrayals, and too how giving hope to others via

biomedical interventions should not be looked upon as leading folks

down a blind path.

Additionally however we do need to look at this as a choice, some

folks choose not to make those choices as well and we should

consider that. We also need to look at acceptance of autism and

learning to live with it as well and how that too can be a postive.

Carolyn

> >

> > Autism's Parent Trap

> >

> > By CAMMIE McGOVERN

> > Published: June 5, 2006

> > http://www.nytimes.com/2006/06/05/opinion/05mcgovern.html?

> > _r=1 & oref=slogin

> >

> > IN recent weeks, three stories have hit the news with grimly

> similar

> > plotlines: parents accused of killing their autistic children.

> >

> > On April 12, in Hull, England, Alison Davies and her 12-year-old

> > son, , fell to their deaths from a bridge over the River

> Humber,

> > in an apparent murder-suicide. (A note was found in Ms. Davies's

> > kitchen.) On May 14, in Albany, Ore., DeGroot, 19,

was

> > trapped inside a burning apartment. He died in a Portland

hospital

> > five days later, and his parents are charged with murder,

accused

> of

> > locking their son in the apartment alone. And on the same May

> > Sunday, in Morton, Ill., Dr. McCarron admitted to the

police

> > that she had, the day before, suffocated her 3-year-old

daughter,

> > , with a plastic garbage bag.

> >

> > Family and friends have come to the defense of two of the

parents

> > involved. " was the focus and the purpose of her life, "

Alison

> > Davies's sister told The Sunday Times, calling the double bridge

> > jump " an act of love. "

> >

> > A friend of Dr. McCarron's — a fellow member of her local autism-

> > support group — told a columnist for The Journal Star of Peoria,

> > Ill., that Dr. McCarron had devoted her life to . " She

> > never took a night off, " the friend said. " She read every book.

> She

> > was trying so hard, pursuing every lead. "

> >

> > Chilling words to any parent of a child with autism who

remembers,

> > as I do, reading every book, pursuing every lead and never

taking

> a

> > night off — because autism feels like a war you re-arm yourself

> > nightly to wage. The comments suggest the parents may have been

> > trying too hard. Perhaps they were frustrated that their efforts

> did

> > not lead to greater improvement in their children. That would

not

> be

> > surprising, because dramatic improvement is what too many

parents

> > are led to expect.

> >

> > Clearly there is a message in the recent deaths about the urgent

> > need to increase support for the rising number of families

> > struggling with autism. Having an autistic child is estimated to

> > cost a family $10,000 to $50,000 a year in out-of-pocket

expenses

> > for medical treatment, therapy and education. With 50 new

> diagnoses

> > of autism in this country every day, support services are

already

> > too stretched to meet the need.

> >

> > But as much as I'd like to fault government policy, I suspect it

> is

> > not entirely to blame. There's another issue that hits closer to

> > home and is harder for most parents of autistic children to be

> > candid about. When your child is initially diagnosed, you read

the

> > early bibles of hope: " Let Me Hear Your Voice, " " Son-Rise " and

> other

> > chronicles of total recovery from autism. Hope comes from a

> variety

> > of treatments, but the message is the same: If you commit all

your

> > time, your money, your family's life, recovery is possible.

> >

> > And who wouldn't do almost anything — mortgage a home, abandon a

> > career or move to be closer to doctors or schools — to enable an

> > autistic child to lead a normal life?

> > Now, as the mother of a 10-year-old, I will say what no parents

> who

> > have just discovered their child is autistic want to hear, but

> > should, at least from one person: I've never met a recovered

child

> > outside the pages of those old books. Not that it doesn't

happen;

> > I'm sure it does. But it's extraordinarily rare and it doesn't

> > happen the way we once were led to believe.

> >

> > According to her friend, Dr. McCarron was in despair in recent

> weeks

> > because 's language had regressed markedly. Every

parent

> of

> > a child on the autism spectrum knows this feeling: I've done

> > everything possible; why isn't he better? The answer is simple:

> > Because this is the way autism works. There are roadblocks in

the

> > brain, mysterious and unmovable. In mythologizing recovery, I

fear

> > we've set an impossibly high bar that's left the parents of a

half-

> > million autistic children feeling like failures.

> >

> > I don't mean to sound pessimistic about the prospects for

autistic

> > children. On the contrary, I see greater optimism in delivering

a

> > more realistic message to families: Children are not cured, but

> they

> > do get better.

> >

> > And better can be remarkable. At 10, my son is a far cry from

the

> > toddler who melted down when the sand was the wrong texture for

> > drizzling. These days he embraces adventure, rides his bike, and

> > repeats any story he tells five or six times. I remember

thinking

> > maybe we'd laugh someday at the lengths we went to when we were

> > teaching him language — the flashcards, the drills, the

> repetitions.

> > Now he's 10 and talking at last in his own quirky ways, and we

> don't

> > laugh about the drills (though we laugh about plenty of other

> > things). Language is a victory. So is connection and purposeful

> > play. So are the simpler things: a full night's sleep, a tantrum-

> > free day.

> >

> > Parents working toward these goals will one day be surprised and

> > delighted by their children's funny new obsessions, odd

fixations,

> > and tentative but extraordinary connections with other children.

> > Being more realistic from the start might make it possible to

> enjoy

> > the journey and to see it for what it is: helping a child who

will

> > always function differently to communicate better and feel less

> > frustrated. To aim for full recovery — for the person your child

> > might have been without autism — is to enter a dangerous

emotional

> > landscape. For three children, the disconnect between parental

> > determination and limited progress may have been lethal.

> >

>

[Guest guest]

Hi,

Ms. McGovern writes " children do get better " , but without saying why

or how kids they get better. She objects to the words like " recovery "

or " cured " . Semantics? OK, Autism Research Institute has 1000 kids

and families ready to talk to the media who got better (scratch

recovered) by detox, and www.findingthewords.org follows 8 children on

the road to getting better (scratch recovery).

One central point of the Op-Ed is sadly true: most of us know

children who were so severely damaged by the effects of mercury at

critical stages of development that " full recovery " for them may be

out of reach. However, if adjusting the goal for the severe kids from

recovery to improvement leads those parents to begin treating their

kids for mercury poisoning, then please, adjust the goal.

For those who read the article online, one reason to be angry with the

Times is the layout of the op-ed. The hard copy has a highlighted

question in the middle of the text, in large font for those skimming,

" Have three deaths exposed the false hope of recovery? " Nasty.

If the Times wants to do some exposing, just print

www.putchildrenfirst.org verbatim.

> > >

> > > Autism's Parent Trap

> > >

> > > By CAMMIE McGOVERN

> > > Published: June 5, 2006

> > > http://www.nytimes.com/2006/06/05/opinion/05mcgovern.html?

> > > _r=1 & oref=slogin

> > >

> > > IN recent weeks, three stories have hit the news with grimly

> > similar

> > > plotlines: parents accused of killing their autistic children.

> > >

> > > On April 12, in Hull, England, Alison Davies and her 12-year-old

> > > son, , fell to their deaths from a bridge over the River

> > Humber,

> > > in an apparent murder-suicide. (A note was found in Ms. Davies's

> > > kitchen.) On May 14, in Albany, Ore., DeGroot, 19,

> was

> > > trapped inside a burning apartment. He died in a Portland

> hospital

> > > five days later, and his parents are charged with murder,

> accused

> > of

> > > locking their son in the apartment alone. And on the same May

> > > Sunday, in Morton, Ill., Dr. McCarron admitted to the

> police

> > > that she had, the day before, suffocated her 3-year-old

> daughter,

> > > , with a plastic garbage bag.

> > >

> > > Family and friends have come to the defense of two of the

> parents

> > > involved. " was the focus and the purpose of her life, "

> Alison

> > > Davies's sister told The Sunday Times, calling the double bridge

> > > jump " an act of love. "

> > >

> > > A friend of Dr. McCarron's — a fellow member of her local autism-

> > > support group — told a columnist for The Journal Star of Peoria,

> > > Ill., that Dr. McCarron had devoted her life to . " She

> > > never took a night off, " the friend said. " She read every book.

> > She

> > > was trying so hard, pursuing every lead. "

> > >

> > > Chilling words to any parent of a child with autism who

> remembers,

> > > as I do, reading every book, pursuing every lead and never

> taking

> > a

> > > night off — because autism feels like a war you re-arm yourself

> > > nightly to wage. The comments suggest the parents may have been

> > > trying too hard. Perhaps they were frustrated that their efforts

> > did

> > > not lead to greater improvement in their children. That would

> not

> > be

> > > surprising, because dramatic improvement is what too many

> parents

> > > are led to expect.

> > >

> > > Clearly there is a message in the recent deaths about the urgent

> > > need to increase support for the rising number of families

> > > struggling with autism. Having an autistic child is estimated to

> > > cost a family $10,000 to $50,000 a year in out-of-pocket

> expenses

> > > for medical treatment, therapy and education. With 50 new

> > diagnoses

> > > of autism in this country every day, support services are

> already

> > > too stretched to meet the need.

> > >

> > > But as much as I'd like to fault government policy, I suspect it

> > is

> > > not entirely to blame. There's another issue that hits closer to

> > > home and is harder for most parents of autistic children to be

> > > candid about. When your child is initially diagnosed, you read

> the

> > > early bibles of hope: " Let Me Hear Your Voice, " " Son-Rise " and

> > other

> > > chronicles of total recovery from autism. Hope comes from a

> > variety

> > > of treatments, but the message is the same: If you commit all

> your

> > > time, your money, your family's life, recovery is possible.

> > >

> > > And who wouldn't do almost anything — mortgage a home, abandon a

> > > career or move to be closer to doctors or schools — to enable an

> > > autistic child to lead a normal life?

> > > Now, as the mother of a 10-year-old, I will say what no parents

> > who

> > > have just discovered their child is autistic want to hear, but

> > > should, at least from one person: I've never met a recovered

> child

> > > outside the pages of those old books. Not that it doesn't

> happen;

> > > I'm sure it does. But it's extraordinarily rare and it doesn't

> > > happen the way we once were led to believe.

> > >

> > > According to her friend, Dr. McCarron was in despair in recent

> > weeks

> > > because 's language had regressed markedly. Every

> parent

> > of

> > > a child on the autism spectrum knows this feeling: I've done

> > > everything possible; why isn't he better? The answer is simple:

> > > Because this is the way autism works. There are roadblocks in

> the

> > > brain, mysterious and unmovable. In mythologizing recovery, I

> fear

> > > we've set an impossibly high bar that's left the parents of a

> half-

> > > million autistic children feeling like failures.

> > >

> > > I don't mean to sound pessimistic about the prospects for

> autistic

> > > children. On the contrary, I see greater optimism in delivering

> a

> > > more realistic message to families: Children are not cured, but

> > they

> > > do get better.

> > >

> > > And better can be remarkable. At 10, my son is a far cry from

> the

> > > toddler who melted down when the sand was the wrong texture for

> > > drizzling. These days he embraces adventure, rides his bike, and

> > > repeats any story he tells five or six times. I remember

> thinking

> > > maybe we'd laugh someday at the lengths we went to when we were

> > > teaching him language — the flashcards, the drills, the

> > repetitions.

> > > Now he's 10 and talking at last in his own quirky ways, and we

> > don't

> > > laugh about the drills (though we laugh about plenty of other

> > > things). Language is a victory. So is connection and purposeful

> > > play. So are the simpler things: a full night's sleep, a tantrum-

> > > free day.

> > >

> > > Parents working toward these goals will one day be surprised and

> > > delighted by their children's funny new obsessions, odd

> fixations,

> > > and tentative but extraordinary connections with other children.

> > > Being more realistic from the start might make it possible to

> > enjoy

> > > the journey and to see it for what it is: helping a child who

> will

> > > always function differently to communicate better and feel less

> > > frustrated. To aim for full recovery — for the person your child

> > > might have been without autism — is to enter a dangerous

> emotional

> > > landscape. For three children, the disconnect between parental

> > > determination and limited progress may have been lethal.

> > >

> >

>

[Guest guest]

Nasty indeed!

> > > >

> > > > Autism's Parent Trap

> > > >

> > > > By CAMMIE McGOVERN

> > > > Published: June 5, 2006

> > > > http://www.nytimes.com/2006/06/05/opinion/05mcgovern.html?

> > > > _r=1 & oref=slogin

> > > >

> > > > IN recent weeks, three stories have hit the news with grimly

> > > similar

> > > > plotlines: parents accused of killing their autistic

children.

> > > >

> > > > On April 12, in Hull, England, Alison Davies and her 12-year-

old

> > > > son, , fell to their deaths from a bridge over the River

> > > Humber,

> > > > in an apparent murder-suicide. (A note was found in Ms.

Davies's

> > > > kitchen.) On May 14, in Albany, Ore., DeGroot,

19,

> > was

> > > > trapped inside a burning apartment. He died in a Portland

> > hospital

> > > > five days later, and his parents are charged with murder,

> > accused

> > > of

> > > > locking their son in the apartment alone. And on the same

May

> > > > Sunday, in Morton, Ill., Dr. McCarron admitted to the

> > police

> > > > that she had, the day before, suffocated her 3-year-old

> > daughter,

> > > > , with a plastic garbage bag.

> > > >

> > > > Family and friends have come to the defense of two of the

> > parents

> > > > involved. " was the focus and the purpose of her life, "

> > Alison

> > > > Davies's sister told The Sunday Times, calling the double

bridge

> > > > jump " an act of love. "

> > > >

> > > > A friend of Dr. McCarron's — a fellow member of her local

autism-

> > > > support group — told a columnist for The Journal Star of

Peoria,

> > > > Ill., that Dr. McCarron had devoted her life to

. " She

> > > > never took a night off, " the friend said. " She read every

book.

> > > She

> > > > was trying so hard, pursuing every lead. "

> > > >

> > > > Chilling words to any parent of a child with autism who

> > remembers,

> > > > as I do, reading every book, pursuing every lead and never

> > taking

> > > a

> > > > night off — because autism feels like a war you re-arm

yourself

> > > > nightly to wage. The comments suggest the parents may have

been

> > > > trying too hard. Perhaps they were frustrated that their

efforts

> > > did

> > > > not lead to greater improvement in their children. That

would

> > not

> > > be

> > > > surprising, because dramatic improvement is what too many

> > parents

> > > > are led to expect.

> > > >

> > > > Clearly there is a message in the recent deaths about the

urgent

> > > > need to increase support for the rising number of families

> > > > struggling with autism. Having an autistic child is

estimated to

> > > > cost a family $10,000 to $50,000 a year in out-of-pocket

> > expenses

> > > > for medical treatment, therapy and education. With 50 new

> > > diagnoses

> > > > of autism in this country every day, support services are

> > already

> > > > too stretched to meet the need.

> > > >

> > > > But as much as I'd like to fault government policy, I

suspect it

> > > is

> > > > not entirely to blame. There's another issue that hits

closer to

> > > > home and is harder for most parents of autistic children to

be

> > > > candid about. When your child is initially diagnosed, you

read

> > the

> > > > early bibles of hope: " Let Me Hear Your Voice, " " Son-Rise "

and

> > > other

> > > > chronicles of total recovery from autism. Hope comes from a

> > > variety

> > > > of treatments, but the message is the same: If you commit

all

> > your

> > > > time, your money, your family's life, recovery is possible.

> > > >

> > > > And who wouldn't do almost anything — mortgage a home,

abandon a

> > > > career or move to be closer to doctors or schools — to

enable an

> > > > autistic child to lead a normal life?

> > > > Now, as the mother of a 10-year-old, I will say what no

parents

> > > who

> > > > have just discovered their child is autistic want to hear,

but

> > > > should, at least from one person: I've never met a recovered

> > child

> > > > outside the pages of those old books. Not that it doesn't

> > happen;

> > > > I'm sure it does. But it's extraordinarily rare and it

doesn't

> > > > happen the way we once were led to believe.

> > > >

> > > > According to her friend, Dr. McCarron was in despair in

recent

> > > weeks

> > > > because 's language had regressed markedly. Every

> > parent

> > > of

> > > > a child on the autism spectrum knows this feeling: I've done

> > > > everything possible; why isn't he better? The answer is

simple:

> > > > Because this is the way autism works. There are roadblocks

in

> > the

> > > > brain, mysterious and unmovable. In mythologizing recovery,

I

> > fear

> > > > we've set an impossibly high bar that's left the parents of

a

> > half-

> > > > million autistic children feeling like failures.

> > > >

> > > > I don't mean to sound pessimistic about the prospects for

> > autistic

> > > > children. On the contrary, I see greater optimism in

delivering

> > a

> > > > more realistic message to families: Children are not cured,

but

> > > they

> > > > do get better.

> > > >

> > > > And better can be remarkable. At 10, my son is a far cry

from

> > the

> > > > toddler who melted down when the sand was the wrong texture

for

> > > > drizzling. These days he embraces adventure, rides his bike,

and

> > > > repeats any story he tells five or six times. I remember

> > thinking

> > > > maybe we'd laugh someday at the lengths we went to when we

were

> > > > teaching him language — the flashcards, the drills, the

> > > repetitions.

> > > > Now he's 10 and talking at last in his own quirky ways, and

we

> > > don't

> > > > laugh about the drills (though we laugh about plenty of

other

> > > > things). Language is a victory. So is connection and

purposeful

> > > > play. So are the simpler things: a full night's sleep, a

tantrum-

> > > > free day.

> > > >

> > > > Parents working toward these goals will one day be surprised

and

> > > > delighted by their children's funny new obsessions, odd

> > fixations,

> > > > and tentative but extraordinary connections with other

children.

> > > > Being more realistic from the start might make it possible

to

> > > enjoy

> > > > the journey and to see it for what it is: helping a child

who

> > will

> > > > always function differently to communicate better and feel

less

> > > > frustrated. To aim for full recovery — for the person your

child

> > > > might have been without autism — is to enter a dangerous

> > emotional

> > > > landscape. For three children, the disconnect between

parental

> > > > determination and limited progress may have been lethal.

> > > >

> > >

> >

>

[Guest guest]

There's always more to it isn't there? The more I read all of your

insights and gain knowledge from you, the more pissed I get! Has

anyone here ever written an Opt-Ed for the Times? Or won't they

print what needs to be said.

I do see Carolyn's point as well as I do run an ASA chapter and

receive calls from parents where I have to offer support. I always

point them to the recovery sites and the studies on that, and then I

tell them in the meantime what they can do to make life a little

easier... I also tell the new parents to stay mad as hell, never

become complacent, never totally accept it, as that will drive them

to git 'er done!

They rightly perceive that the government mandated mercury poisoning

of a generation of children in the 1990's sets back their universal

healthcare agenda.

We should also perceive that bias.

> > > >

> > > > Autism's Parent Trap

> > > >

> > > > By CAMMIE McGOVERN

> > > > Published: June 5, 2006

> > > > http://www.nytimes.com/2006/06/05/opinion/05mcgovern.html?

> > > > _r=1 & oref=slogin

> > > >

> > > > IN recent weeks, three stories have hit the news with

grimly

> > > similar

> > > > plotlines: parents accused of killing their autistic

children.

> > > >

> > > > On April 12, in Hull, England, Alison Davies and her 12-

year-old

> > > > son, , fell to their deaths from a bridge over the

River

> > > Humber,

> > > > in an apparent murder-suicide. (A note was found in Ms.

Davies's

> > > > kitchen.) On May 14, in Albany, Ore., DeGroot,

19,

> > was

> > > > trapped inside a burning apartment. He died in a Portland

> > hospital

> > > > five days later, and his parents are charged with murder,

> > accused

> > > of

> > > > locking their son in the apartment alone. And on the same

May

> > > > Sunday, in Morton, Ill., Dr. McCarron admitted to

the

> > police

> > > > that she had, the day before, suffocated her 3-year-old

> > daughter,

> > > > , with a plastic garbage bag.

> > > >

> > > > Family and friends have come to the defense of two of the

> > parents

> > > > involved. " was the focus and the purpose of her

life, "

> > Alison

> > > > Davies's sister told The Sunday Times, calling the double

bridge

> > > > jump " an act of love. "

> > > >

> > > > A friend of Dr. McCarron's - a fellow member of her local

autism-

> > > > support group - told a columnist for The Journal Star of

Peoria,

> > > > Ill., that Dr. McCarron had devoted her life to

. " She

> > > > never took a night off, " the friend said. " She read every

book.

> > > She

> > > > was trying so hard, pursuing every lead. "

> > > >

> > > > Chilling words to any parent of a child with autism who

> > remembers,

> > > > as I do, reading every book, pursuing every lead and never

> > taking

> > > a

> > > > night off - because autism feels like a war you re-arm

yourself

> > > > nightly to wage. The comments suggest the parents may have

been

> > > > trying too hard. Perhaps they were frustrated that their

efforts

> > > did

> > > > not lead to greater improvement in their children. That

would

> > not

> > > be

> > > > surprising, because dramatic improvement is what too many

> > parents

> > > > are led to expect.

> > > >

> > > > Clearly there is a message in the recent deaths about the

urgent

> > > > need to increase support for the rising number of families

> > > > struggling with autism. Having an autistic child is

estimated to

> > > > cost a family $10,000 to $50,000 a year in out-of-pocket

> > expenses

> > > > for medical treatment, therapy and education. With 50 new

> > > diagnoses

> > > > of autism in this country every day, support services are

> > already

> > > > too stretched to meet the need.

> > > >

> > > > But as much as I'd like to fault government policy, I

suspect it

> > > is

> > > > not entirely to blame. There's another issue that hits

closer to

> > > > home and is harder for most parents of autistic children

to be

> > > > candid about. When your child is initially diagnosed, you

read

> > the

> > > > early bibles of hope: " Let Me Hear Your Voice, " " Son-Rise "

and

> > > other

> > > > chronicles of total recovery from autism. Hope comes from

a

> > > variety

> > > > of treatments, but the message is the same: If you commit

all

> > your

> > > > time, your money, your family's life, recovery is

possible.

> > > >

> > > > And who wouldn't do almost anything - mortgage a home,

abandon a

> > > > career or move to be closer to doctors or schools - to

enable an

> > > > autistic child to lead a normal life?

> > > > Now, as the mother of a 10-year-old, I will say what no

parents

> > > who

> > > > have just discovered their child is autistic want to hear,

but

> > > > should, at least from one person: I've never met a

recovered

> > child

> > > > outside the pages of those old books. Not that it doesn't

> > happen;

> > > > I'm sure it does. But it's extraordinarily rare and it

doesn't

> > > > happen the way we once were led to believe.

> > > >

> > > > According to her friend, Dr. McCarron was in despair in

recent

> > > weeks

> > > > because 's language had regressed markedly. Every

> > parent

> > > of

> > > > a child on the autism spectrum knows this feeling: I've

done

> > > > everything possible; why isn't he better? The answer is

simple:

> > > > Because this is the way autism works. There are roadblocks

in

> > the

> > > > brain, mysterious and unmovable. In mythologizing

recovery, I

> > fear

> > > > we've set an impossibly high bar that's left the parents

of a

> > half-

> > > > million autistic children feeling like failures.

> > > >

> > > > I don't mean to sound pessimistic about the prospects for

> > autistic

> > > > children. On the contrary, I see greater optimism in

delivering

> > a

> > > > more realistic message to families: Children are not

cured, but

> > > they

> > > > do get better.

> > > >

> > > > And better can be remarkable. At 10, my son is a far cry

from

> > the

> > > > toddler who melted down when the sand was the wrong

texture for

> > > > drizzling. These days he embraces adventure, rides his

bike, and

> > > > repeats any story he tells five or six times. I remember

> > thinking

> > > > maybe we'd laugh someday at the lengths we went to when we

were

> > > > teaching him language - the flashcards, the drills, the

> > > repetitions.

> > > > Now he's 10 and talking at last in his own quirky ways,

and we

> > > don't

> > > > laugh about the drills (though we laugh about plenty of

other

> > > > things). Language is a victory. So is connection and

purposeful

> > > > play. So are the simpler things: a full night's sleep, a

tantrum-

> > > > free day.

> > > >

> > > > Parents working toward these goals will one day be

surprised and

> > > > delighted by their children's funny new obsessions, odd

> > fixations,

> > > > and tentative but extraordinary connections with other

children.

> > > > Being more realistic from the start might make it possible

to

> > > enjoy

> > > > the journey and to see it for what it is: helping a child

who

> > will

> > > > always function differently to communicate better and feel

less

> > > > frustrated. To aim for full recovery - for the person your

child

> > > > might have been without autism - is to enter a dangerous

> > emotional

> > > > landscape. For three children, the disconnect between

parental

> > > > determination and limited progress may have been lethal.

> > > >

> > >

> >

>

[Guest guest]

>

this is a test post

[Guest guest]

I did submit an Op-Ed a month ago that was in response to

the long-term costs associated with Autism. I believe, unless you have some

track record, the NYT will not take an author seriously.

This is the op-ed-

The Cost of Autism-

A recent article printed by the United Press International, quoted

Ganz, assistant professor of society, human development and health at

Harvard School of Public Health, as the lifetime cost of caring for all persons

with Autism as $35 billion. Professor Ganz also states this may be an

underestimate of the actual societal costs for caring for the individuals

affected with Autism. Although, the actual figure of $35 billion is rather

disquieting, it is the second statement which should be seriously addressed.

According to Lifespire, a direct service provider for the

developmentally disabled in New York

City, current long-term care costs for adults needing

intermediate care facility level of care is $10.125 million per person during

their life time. This is based on average services provided, which includes

group home placement and supports, day program support, and recreational

activities. After the age of 18, those costs are translated to the tax payer

in the form of Social Security, Medicaid and Medicare services. This being a

higher cost area, this may not reflect the costs for the rest of the country.

So looking at a state that has a comparable cost of living and an accurate

tracking of individuals who are accessing long-term care services is

imperative.

California,

tracks the access of the long-term care supports and services provided through

the Department of Developmental Services for individuals with developmental

disabilities, which includes Autism. Eligibility for services is a based on

two set of criteria. The first is diagnosis, which must be Autism, not Autism

Spectrum Disorder, Aspergers Syndrome or Pervasive Developmental Disorder. The

second is based on having a substantial disability in three functional daily

living skills, such as self-care, receptive and expressive language,

self-direction, capacity for independent living, economic self-sufficiency,

learning or mobility.

The CDDS releases a quarterly report regarding the number of

individuals over the age of 3 who have been determined eligible for services.

The April 2006 report had current number of adults ages 18 and older enrolled

in services as 5,364 individuals with Autism. Compare that to the number of

children 17 years and younger as 23, 507 enrolled in long-term care services.

As disturbing as the disparity in the number of children affected by the

disorder as compared to the adults, even more shocking is the actual costs for

long-term care for these children.

When you take the number of children affected times the long term costs

reported by Lifespire, the costs for the state of California alone for these supports for the

children affected by Autism is $238 Billion. As alarming as this number is,

that is calculated for one state only and in today’s economic terms. Nor

does this estimate take into account the loss of productivity and the inability

of those affected to sustain gainful employment.

It seems Professor Ganz was correct, the $35 Billion cost for supports

for all people with Autism is an underestimate. Also underestimated is the

impact on the solvency of programs such as Social Security, Medicaid and

Medicare, which will also be providing supports for the Baby-boom Generation in

conjunction with the aging population of children affected with Autism. The

question arises, without denying the societal responsibility to our most

vulnerable populations, is this crisis avoidable for our country?

[Guest guest]

Hi Bob, I agree, it is easy to diagnose from a long distance without the facts, ala', Bill Frist and Terry Shivo. Shapiro

Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

[Guest guest]

It is difficult, but not impossible to get an essay into the OP:ED

section of your local newspaper, even if you're a literary " nobody. "

It has to be well-written and it helps greatly if you have a local

" angle " on the topic.

Letters to the editor in many major newspapers have a ridiculous

length restriction making them all into little newsprint sound bites,

trying to dummy down to the level of TV. (The NY Times limits you to

150 words, the Sacramento Bee goes all the way up to 200. I wrote the

SacBee letters editor and told him that they ought to change the name

from letters to the editor to a more realistic " postcards to the

editor " . Needless to say, they did take my advice and didn't publish

my postcard. Newspaper circulations are all going to hell lately,

probably from ignoring good advice.)

Lenny

> > > > >

> > > > > Autism's Parent Trap

> > > > >

> > > > > By CAMMIE McGOVERN

> > > > > Published: June 5, 2006

> > > > > http://www.nytimes.com/2006/06/05/opinion/05mcgovern.html?

> > > > > _r=1 & oref=slogin

> > > > >

> > > > > IN recent weeks, three stories have hit the news with

> grimly

> > > > similar

> > > > > plotlines: parents accused of killing their autistic

> children.

> > > > >

> > > > > On April 12, in Hull, England, Alison Davies and her 12-

> year-old

> > > > > son, , fell to their deaths from a bridge over the

> River

> > > > Humber,

> > > > > in an apparent murder-suicide. (A note was found in Ms.

> Davies's

> > > > > kitchen.) On May 14, in Albany, Ore., DeGroot,

> 19,

> > > was

> > > > > trapped inside a burning apartment. He died in a Portland

> > > hospital

> > > > > five days later, and his parents are charged with murder,

> > > accused

> > > > of

> > > > > locking their son in the apartment alone. And on the same

> May

> > > > > Sunday, in Morton, Ill., Dr. McCarron admitted to

> the

> > > police

> > > > > that she had, the day before, suffocated her 3-year-old

> > > daughter,

> > > > > , with a plastic garbage bag.

> > > > >

> > > > > Family and friends have come to the defense of two of the

> > > parents

> > > > > involved. " was the focus and the purpose of her

> life, "

> > > Alison

> > > > > Davies's sister told The Sunday Times, calling the double

> bridge

> > > > > jump " an act of love. "

> > > > >

> > > > > A friend of Dr. McCarron's - a fellow member of her local

> autism-

> > > > > support group - told a columnist for The Journal Star of

> Peoria,

> > > > > Ill., that Dr. McCarron had devoted her life to

> . " She

> > > > > never took a night off, " the friend said. " She read every

> book.

> > > > She

> > > > > was trying so hard, pursuing every lead. "

> > > > >

> > > > > Chilling words to any parent of a child with autism who

> > > remembers,

> > > > > as I do, reading every book, pursuing every lead and never

> > > taking

> > > > a

> > > > > night off - because autism feels like a war you re-arm

> yourself

> > > > > nightly to wage. The comments suggest the parents may have

> been

> > > > > trying too hard. Perhaps they were frustrated that their

> efforts

> > > > did

> > > > > not lead to greater improvement in their children. That

> would

> > > not

> > > > be

> > > > > surprising, because dramatic improvement is what too many

> > > parents

> > > > > are led to expect.

> > > > >

> > > > > Clearly there is a message in the recent deaths about the

> urgent

> > > > > need to increase support for the rising number of families

> > > > > struggling with autism. Having an autistic child is

> estimated to

> > > > > cost a family $10,000 to $50,000 a year in out-of-pocket

> > > expenses

> > > > > for medical treatment, therapy and education. With 50 new

> > > > diagnoses

> > > > > of autism in this country every day, support services are

> > > already

> > > > > too stretched to meet the need.

> > > > >

> > > > > But as much as I'd like to fault government policy, I

> suspect it

> > > > is

> > > > > not entirely to blame. There's another issue that hits

> closer to

> > > > > home and is harder for most parents of autistic children

> to be

> > > > > candid about. When your child is initially diagnosed, you

> read

> > > the

> > > > > early bibles of hope: " Let Me Hear Your Voice, " " Son-Rise "

> and

> > > > other

> > > > > chronicles of total recovery from autism. Hope comes from

> a

> > > > variety

> > > > > of treatments, but the message is the same: If you commit

> all

> > > your

> > > > > time, your money, your family's life, recovery is

> possible.

> > > > >

> > > > > And who wouldn't do almost anything - mortgage a home,

> abandon a

> > > > > career or move to be closer to doctors or schools - to

> enable an

> > > > > autistic child to lead a normal life?

> > > > > Now, as the mother of a 10-year-old, I will say what no

> parents

> > > > who

> > > > > have just discovered their child is autistic want to hear,

> but

> > > > > should, at least from one person: I've never met a

> recovered

> > > child

> > > > > outside the pages of those old books. Not that it doesn't

> > > happen;

> > > > > I'm sure it does. But it's extraordinarily rare and it

> doesn't

> > > > > happen the way we once were led to believe.

> > > > >

> > > > > According to her friend, Dr. McCarron was in despair in

> recent

> > > > weeks

> > > > > because 's language had regressed markedly. Every

> > > parent

> > > > of

> > > > > a child on the autism spectrum knows this feeling: I've

> done

> > > > > everything possible; why isn't he better? The answer is

> simple:

> > > > > Because this is the way autism works. There are roadblocks

> in

> > > the

> > > > > brain, mysterious and unmovable. In mythologizing

> recovery, I

> > > fear

> > > > > we've set an impossibly high bar that's left the parents

> of a

> > > half-

> > > > > million autistic children feeling like failures.

> > > > >

> > > > > I don't mean to sound pessimistic about the prospects for

> > > autistic

> > > > > children. On the contrary, I see greater optimism in

> delivering

> > > a

> > > > > more realistic message to families: Children are not

> cured, but

> > > > they

> > > > > do get better.

> > > > >

> > > > > And better can be remarkable. At 10, my son is a far cry

> from

> > > the

> > > > > toddler who melted down when the sand was the wrong

> texture for

> > > > > drizzling. These days he embraces adventure, rides his

> bike, and

> > > > > repeats any story he tells five or six times. I remember

> > > thinking

> > > > > maybe we'd laugh someday at the lengths we went to when we

> were

> > > > > teaching him language - the flashcards, the drills, the

> > > > repetitions.

> > > > > Now he's 10 and talking at last in his own quirky ways,

> and we

> > > > don't

> > > > > laugh about the drills (though we laugh about plenty of

> other

> > > > > things). Language is a victory. So is connection and

> purposeful

> > > > > play. So are the simpler things: a full night's sleep, a

> tantrum-

> > > > > free day.

> > > > >

> > > > > Parents working toward these goals will one day be

> surprised and

> > > > > delighted by their children's funny new obsessions, odd

> > > fixations,

> > > > > and tentative but extraordinary connections with other

> children.

> > > > > Being more realistic from the start might make it possible

> to

> > > > enjoy

> > > > > the journey and to see it for what it is: helping a child

> who

> > > will

> > > > > always function differently to communicate better and feel

> less

> > > > > frustrated. To aim for full recovery - for the person your

> child

> > > > > might have been without autism - is to enter a dangerous

> > > emotional

> > > > > landscape. For three children, the disconnect between

> parental

> > > > > determination and limited progress may have been lethal.

> > > > >

> > > >

> > >

> >

>

>

>

>

>

>

>

>

> ---------------------------------

> Talk is cheap. Use Messenger to make PC-to-Phone calls.

Great rates starting at 1¢/min.

>