"Autism's Parent Trap"

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BTDT
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"Autism's Parent Trap"

Postby BTDT » Mon Jun 05, 2006 6:51 am

http://www.nytimes.com/2006/06/05/opini ... ref=slogin

New York Times
June 5, 2006
Op-Ed Contributor

By CAMMIE McGOVERN

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, Ryan, 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., Christopher 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. Karen McCarron admitted to the police that she had, the day before, suffocated her 3-year-old daughter, Katherine, with a plastic garbage bag.

Family and friends have come to the defense of two of the parents involved. "Ryan 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 Katherine. "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 Katherine'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.

Cammie McGovern is the author of "Eye Contact," a novel.

LM
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Postby LM » Mon Jun 05, 2006 7:53 am

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.


So true!

Thanks for posting this!

Joey'smom
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Postby Joey'smom » Mon Jun 05, 2006 10:22 am

Yes, this is great. Recovery can be recovery from tantrums and sleepless nights as well. In our case, I've already recovered my son from THAT existence, so in those terms, we are a success.

If he never improves and just stays right now how he is, I'm happy. He's happy, verbal, telling us what he wants, commenting, present, and his gut seems much healthier. No, we don't have typical speech, but after being with his 5 year old NT cousin this past weekend, I'm not sure that's where we want to go anyway! :?

Just a day ago he discovered a fishing rod in the garage, then asked his dad if they could go fishing . . .he is interested in it! I mean, pretty typical if you ask me!
Joey, 10 yrs., PDD-NOS was our last dx
GFCF, Yasko, ABA
Hoping to get to RDI

littlebopeep
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Postby littlebopeep » Mon Jun 05, 2006 10:42 am

Thanks, BTDT.

This author represents what acceptance is all about. I just hope she passes her background check! :lol:
Fred, 7, NT
Barney, 5, autism

LittleManzParents
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Postby LittleManzParents » Mon Jun 05, 2006 10:44 am

littlebopeep wrote:Thanks, BTDT.

This author represents what acceptance is all about. I just hope she passes her background check! :lol:


:lol:

BTDT
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Postby BTDT » Mon Jun 05, 2006 10:53 am

I checked her out before I posted. :D :wink:

littlebopeep
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Postby littlebopeep » Mon Jun 05, 2006 11:20 am

Whew! :lol:
Fred, 7, NT

Barney, 5, autism

srinath
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No background checks.

Postby srinath » Tue Jun 06, 2006 10:14 am

BTDT wrote:I checked her out before I posted. :D :wink:


You need not have bothered ... the only person who does background checks ... will not even bother with this post cos this is soooooo much in her favor ...
Of course anything that goes against her POV will get decimated ...
Cool.
Srinath.

littlebopeep
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Re: No background checks.

Postby littlebopeep » Tue Jun 06, 2006 10:52 am

srinath wrote:the only person who does background checks ...


We would all do well to look into the background of the author of any article posted on this message board. There is an interesting discussion going on right now about this very subject (among others.)

http://www.autismweb.com/forum/viewtopic.php?t=6403
Fred, 7, NT

Barney, 5, autism

srinath
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Joined: Tue Dec 20, 2005 12:33 pm

No we do not

Postby srinath » Tue Jun 06, 2006 11:37 am

No I dont care about background checks ...
This board is about anecdotal evidence, and no one for whatevere reason uses their real name except me the (mild expletive deleted) ... so what relevance is a background check ...
We dont need to pick apart and question and question and question any thing and everything just to not ever have any intention of ever attempting it ... This is all un official, we know what the official stance is ... AKA ... by questioning what we did over and over and over ... with no intention of doing it is remarkably similar to calling us liars or wasting our time for no reason.
Remember we aren't idiots, we are professionals - teachers, accountants, engineers and sales people and what not, and people who have in effect succeeded and gotten to a point in their life much beyond the level usually populated by dummies. That and the 1000+ numbers on the Chelating kids sites, and autism-mercury sites. We dont care who it is that posts what ... we read it and just take it as someone's experience.
Cool.
Srinath.

littlebopeep
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Postby littlebopeep » Tue Jun 06, 2006 12:56 pm

huh?
Fred, 7, NT

Barney, 5, autism

give a mouse a cookie
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Postby give a mouse a cookie » Tue Jun 06, 2006 1:03 pm

At the risk of tainting a most excellent thread with a post from a pariah....

This brilliant article sums up a lot of what some of us, myself included, have been trying to say all along.
There is inherent danger in setting unrealisitic and sometimes (frequently) impossible goals for autistic children. Parents will literally stop at nothing to have a diagnosis removed or pronounce their children recovered, or cured, or indistinguishable from their peers.
Where is the stopping point? After you've chelated for over two years, as one prominent commenter has done with his daughter? After trying Lupron with unexpected results, as another has done? After you've resorted to deception to a spouse about the extent of treatments?
Granted, these appear to be isolated incidents, but they are not.
The above examples are just a sampling of what some parents are willing to go through to have a "normal" child. Don't even start with the financial aspect of some of these treatments--many of which are not useful or beneficial to the autistic child.
I see parents on this forum saying "I will never give up!" "I will never stop fighting!" But maybe they will. Someday, when they realize that they have chelated the bejeebers out of their child to no avail, they will realize that the autism is still there.

What then? Lupron? HBOT? IV instead of transdermal chelaton? Valtrex? More dietary restrictions? The list of possible treatments for autism is potentially endless. And with each new treatment is renewed hope for recovery and a cure, and with it, more pressure on the parents. More importantly, more pressure on the child to perform to parents' expectations and aspirations.

I liken a child recovered from autism to a win playing the lottery, or kid from the projects hitting it big in the NBA, or a child talented in gymnastics winning the Olympic gold medal. Yes, I guess it may be possible, but the chances are astronomical. And my purely uneducated guess is that if a child loses a diagnosis of autism, then they were fairly high-functioning, maybe Asperger's, to begin with. Where are the success stories of severely autistic children recovering? I'm not talking about sleeping through the night, or the cessation of explosive diarrhea, or the lack of headbanging. I'm talking about absolute documented recovery of a severely autistic child. Not parents' stories--something we can really sink our teeth into. It's too easy to lie online about gains, or to see what we want to see, or to brag about progress that may very well have occurred on its own, not due to any intervention, but due to the child's own maturation process and the passage of time. For the record, I stopped buying lottery tickets years ago.

I see nothing wrong with focusing on the recent tragic deaths associated with autistic individuals. It's a wake up call. Three deaths in less than a few months. Two in the space of two days. All related to individuals who were diagnosed severely autistic. Katie McCarron was the youngest victim at three years of age. Her mother had avidly pursued biomed as the answer to her prayers. She will most likely not even stand trial for her daughter's murder--playing on sympathy and pity for having such a challenging child to deal with.

I read with interest the "acceptance" thread in the biomed section of the forum. I was disappointed. Little of value there, unless you count the back-slapping praise and familiar gushing about each other's fabulous parenting skills involving their "fight" against autism.
Acceptance is more than that. Acceptance is knowing that your child may never win the lottery, play in the NBA or win Olympic gold. Acceptance is not about love. It's about harsh reality. I would not presume to accuse any commenters of not loving their autistic child. I believe that Karen McCarron loved her child, as did the DeGroots and Alison Davies. So love has nothing to do with it. Acceptance is not fighting against something, but working with it and giving consideration to apparent limitations, and being open to improvements that come your way and revamping goals and expectations. It's about relaxing with your child, taking pressure off of them and yourselves, learning to enjoy your child as they are, not as they could have been without autism.

srinath
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I agree

Postby srinath » Tue Jun 06, 2006 1:12 pm

I agree GMAC ... you should accept ... now can we move on ... OK then.
Cool.
Srinath.

Susan'sHope
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Joined: Sat Oct 15, 2005 1:46 am

Postby Susan'sHope » Tue Jun 06, 2006 3:56 pm

We should never let others out there who don't approve of how we choose to help our children make us feel like we are any less of parents or that we don't accept our children. We cannot let others twist our motives and hope for our children into something ugly and selfish. It is those out there who feel it is somehow there right to judge other peoples motives that have the problem. To me it is just plain self righteousness to think you accept your child more than someone else does and to think you have a better understanding of what acceptance is.
For those of you who choose not to do biomed, I still believe you truly love and accept you children for who they are and it would be so wrong for me to accuse you otherwise.




GAMAC,
I've quoted myself from the thread that you are so disappointed with. After reading your post I felt very disapointed. Your self righteousness is so apparent. If you could just accept the fact that it is acceptable for people to have other views and beliefs than yours then maybe I would think that indeed you understood what the meaning of acceptance is. As soon as I saw your name I new your post would be one of telling people how their view of acceptance is so wrong and how your beliefs are so right.

I see parents on this forum saying "I will never give up!" "I will never stop fighting!" But maybe they will. Someday, when they realize that they have chelated the bejeebers out of their child to no avail, they will realize that the autism is still there.


Whether my child had Downs, were blind, deaf, or even NT I would never stop fighting for that child. Please don't turn the phrase fighting for your child into something ugly. To me the word fighting means to never give up on your child and to do what is in your power to help your child have the best future possible. People have fought for their freedom and so many other noble things in this world. The use of the phrase fight I think is a perfect discription of how a parent acknowledges the fact that being a parent means more than just loving and accepting them. It also means teaching them, guiding them and even desciplining them.

I do realize that I will never change your view on things. And I'm not sure if you've noticed yet that you haven't realy changed anyone elses view of things either. Your tactics of trying to shove your views on to everyone and ridicule thier way of believing has had the opposite offect than you were hoping for. IMHO your views on things seem some what wharped. The people that I believe are doing a better job at accepting thier children are the ones that show their acceptance of many things.

I read with interest the "acceptance" thread in the biomed section of the forum. I was disappointed. Little of value there, unless you count the back-slapping praise and familiar gushing about each other's fabulous parenting skills involving their "fight" against autism.


I read this with great disapointment. To devalue the fact that parents are supporting one another just because you don't believe the same as they do is very sad indeed. I'm sure if this was a bunch of parents who believed the same as you do you would be jumping right onto the support wagon.

I have no problem with you having your own views on acceptance. I have a problem with someone that has such self righteousness that she belittles anyone who she crosses paths with that isn't like minded.

Once upon a time there was a place where people could go and share their views and it was ok to disagree or not share the same beliefs. It was safe to debate without ridicule. People respected one another and their were no sides. Then a couple of people came and reeked havoc onto the peaceful place. Now it is a place where battle happens often. Maybe one day the people causing havoc will cease and it will once again be a place where people can seek out advice and support no matter what their beliefs are and not worry about stepping onto a landmine.
Knowledge Without Experience Is Just Information ~ Mark Twain

srinath
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Joined: Tue Dec 20, 2005 12:33 pm

There are some people

Postby srinath » Tue Jun 06, 2006 4:06 pm

Susan's hope - Please remember on this site atleast, there are some people who definitely aren't trying to say, this did this for my child, and sounds similar to your child and might be something worth looking into.
These are most likely people who like to say "do as we say, not as we do" or "do as we say because nothing worked for us so all is lost for your child".
I'll make sure I post what we are doing and how its working. That's the best I can do. Of course I always question the posters motives and I always take everything with a generous grain of motive ... I'd suggest you do the same ... yea it gets confusing I know ... that may explain the dull headache I have had the whole day ...
Cool.
Srinath.

give a mouse a cookie
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Postby give a mouse a cookie » Tue Jun 06, 2006 4:49 pm

Susan's Hope wrote:
Maybe one day the people causing havoc will cease and it will once again be a place where people can seek out advice and support no matter what their beliefs are and not worry about stepping onto a landmine.


Don't count on it. I'm not entirely alone in my views here, or elsewhere, for that matter.

you also wrote:
Once upon a time there was a place where people could go and share their views and it was ok to disagree or not share the same beliefs. It was safe to debate without ridicule. People respected one another and their were no sides.


There are many places such as you desire.
Here's one:
http://health.groups.yahoo.com/group/Autism-Mercury/
and another:
http://www.momsagainstmercury.org/
and another:
http://www.generationrescue.org/
and another:
http://health.groups.yahoo.com/group/chelatingkids2/
and another:
http://health.groups.yahoo.com/group/abmd/
and another:
http://health.groups.yahoo.com/group/mb12valtrex/
and just one more, though there are literally dozens of "safe havens" online:
http://health.groups.yahoo.com/group/autism_and_vaccinations/


and finally, you said:
IMHO your views on things seem some what wharped.


You are entitled to your humble opinion, as am I. I'm not "self-righteous" as you put it. Just plain righteous will do fine.
http://www.m-w.com/cgi-bin/dictionary?va=righteous I prefer definition #3.

Winnie
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Postby Winnie » Tue Jun 06, 2006 5:04 pm

Once upon a time there was a place where people could go and share their views and it was ok to disagree or not share the same beliefs. It was safe to debate without ridicule. People respected one another and their were no sides.


I dunno -- the splitting off of forums happened before I was reading this forum. And I recall someone mentioning that it had to be shut down for a few days at one point -- wasn't around then either.

When I first began reading this forum, I recall some nastiness, people leaving, and deleted posts. Don't really recall what it was about though. This was long before I began posting, btw.

I doubt that any forum will ever be the land of perfect...
Winnie
"Make it a powerful memory, the happiest you can remember."

Susan'sHope
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Joined: Sat Oct 15, 2005 1:46 am

Postby Susan'sHope » Tue Jun 06, 2006 5:07 pm

GAMAC,
You don't have to create havoc just because you have a different view. Yes I have been to all those websites that you have listed, but I was reffering to how this forum use to be. I could go to a place that mostly has views as I do, but I also like to go to places that have different views than mine. I enjoy (and I think I learn some too) from reading all different types views on autism. But to have a different view does not mean that you have to ridicule other parents parenting abilities. When you tell someone that they don't truly accept there child you are basicaly saying they lack in parenting abilities. It's hurtful to accuse someone of not accepting thier own child whom they love with all their heart. Just because your definition of acceptance is different doesn't make it ok for you to tell someone that they don't accept their child. People that do that are self righteous, not righteous.
Knowledge Without Experience Is Just Information ~ Mark Twain

give a mouse a cookie
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Postby give a mouse a cookie » Tue Jun 06, 2006 5:14 pm

Susan said:
I could go to a place that mostly has views as I do, but I also like to go to places that have different views than mine.


Welcome home.

And BTW, it's not the autistic children that are not being accepted,it's the autism itself. IMHO.

Susan'sHope
Posts: 901
Joined: Sat Oct 15, 2005 1:46 am

Postby Susan'sHope » Tue Jun 06, 2006 5:22 pm

Winnie,
No not perfect, but the last few months it has been nothing like it use to be. Yes I remember there being a few problems in the past, but none of them had lasted near to what has been going on lately. I think it was good that they made sections for different topics. Biomedical has more to do with health and ABA & PRT have more to do with education. Debate is good and healthy, but even what has supposed to be debate has become not so good in MHO. It has become some what of a battlefield and sides have been created. I have seen so much venom from both sides that it has become really unhealthy. All of it has become way to personal. Topics have gone off track on a daily basis. I don't think this forum was meant to be like that. It's hard to get support and learn anything (not saying it impossible) when there is so much friction going on. I think each and every one of us is capable of ceasing all this havoc.
Knowledge Without Experience Is Just Information ~ Mark Twain


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