Dateline…Speaks
June 14, 2006 by Do'C 
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My wife recently told me about an acquaintance of ours (through a local online parent group) who had just withdrawn from the Arizona chelation study at the Southwest College of Naturopathic Medicine. It had been I long time since I had exchanged any sort of messages with her or the group, so I sent her an e-mail to ask her about it.
Boy was I in for a wonderful surprise - a return message full of love and acceptance for a wonderful child! This was interesting to me, because I was curious how the influence of media like NBC’s Dateline or Autism Speaks may or may not have played a part in her decision, especially since her daughter had actually appeared in the Dateline segment. I did not specifically mention Dateline or Autism Speaks in my original e-mail to her, but did ask if media was an influence.
We exchanged several more e-mails and discussed her guest blogging about this. Without any further ado, I’d like to welcome a guest blogger to Autism Street who will go by the name Belle. She’ll refer to her daughter as Mulan. I’ll ask Belle two questions, and she’ll provide her answers. Whether or not she fields any comments will be entirely up to her.
~~~~~
Belle, what influenced your decision to participate?
I had read a lot on chelation, and I was at one point in my life, ready to do “whatever” it took! It’s easy for parents to get hooked on all the hype and “doom and gloom” out there. If at one point I had read that I could get a child as cool and great as Mulan, then maybe I wouldn’t have been so quick to do “whatever” it took.
How did you arrive at the decision to withdraw Mulan from the study?
Thanks to time, discussion with friends, and Mulan herself, I decided to withdraw. I signed up for this about a year ago, got approved for it, and started the process. Since signing up, I had a lot of time to listen to others and to think more about what I was doing.
Then there’s Mulan. Mulan is doing soo well! I couldn’t ask for a child to be doing as well as her. If I had been told that she’d be doing as well as she is, I wouldn’t have believed what anyone was telling me. I know another local research nurse who has a son who is also doing really well. Sometimes it seems she’s the only one I know who doesn’t talk “doom and gloom”. I am taking her attitude. I do believe that with a lot of hard work on the parents’ part, discipline, and reality, your child can do a lot!
When I read about someone’s child who is doing such and such, and they attribute it to pills or chelation, I think, oh yeah, Mulan is doing that. And it’s not because of a pill or chelation, it’s because of good old-fashioned hard work! There’s a short movie that someone at [name removed] suggested I watch. It’s about how chelation has supposedly helped their children. It’s horrible! I thought that Mulan could easily be on that as well - I have pictures of her freaking of getting her picture taken, and then I could use her kindergarten picture, before hours of therapy and hard work, etc.
After seeing the piece on Dateline, and that clip from autism speaks, I am sick and tired of the “doom and gloom” attitude. Dateline showed Mulan for approx. 4 seconds. Both times, it appeared they tried to make her look like a freak. The first time she was up close to the camera and making a face. Those of us who know her, know that she’s vain and loves the camera. My dad always has the video camera and will turn it around so Mulan can see herself. Mulan was just doing her thing in front of the camera. I could see any and all of my kids doing what Mulan was doing, especially if it’s edited carefully. I’m sure I could find all three of my kids looking like freaks - they’re kids! Then they showed her getting her ears checked and she’s hand flapping. Yes, because of autism Mulan is a hand flapper when she’s excited. They couldn’t show the whole story let alone the fact that she’s a child with autism that has never seen this Dr. before, and was excited to have a check up.
They could have shown Mulan socializing with her siblings or communicating with the doctor, but they didn’t do that. Apparently Dateline would think it okay to have people believe that people with autism don’t socialize or communicate! Now I am going off on a totally different tangent, but I was sort of hoping that after seeing the show I would have changed my mind and decided to “go for it” with Mulan. Instead, it just made me more adamant that I wasn’t going to do this to Mulan. Before the show I just had a lot of fear.
Mulan has always been healthy. I’ve had her at the Dr. more than once convinced she had strep, and she didn’t. Actually, her siblings get strep, and she doesn’t. It’s weird in a way, but I’m not complaining! Mulan also hasn’t had any surgeries since she’s been diagnosed. She’s had nothing medical done to her, so I have fear of doing anything medically unnecessary to her. Not that I wouldn’t do anything for her medically, I would in a heart beat if she needed it. She doesn’t need DMSA, so I am choosing not to give it to her.
I want to clarify that I don’t blame the medical community for Mulan’s autism - she was born with it, I know that. I have seen my child take such great steps forward, that I fear giving her anything that might hurt her. I still give her McD’s, and candy with all the food coloring in the world. She will get an Icee at Target on occasion, just like her siblings. I guess some might say those things might hurt her, but that’s called living, and Mulan is living and functioning in her own cool way.
I just had Mulan’s first habilitation worker quit. This woman is the coolest woman ever. I thanked her for helping Mulan become the weird free spirit that she is. I love my weird free spirit, and I hope others can see how her free spiritedness is actually pretty cool, and not necessarily as weird as they first might think!
- Belle
~~~~~
Thank you for taking the time tell us more Belle. Your daughter is adorable!
Autism Diva’s notes on that autism speaks clip
Conuly’s notes on that autism speaks clip
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Comment by Kev — 14 June, 2006 @ 11:41 am
Belle - its great to hear your story and great to see Mulan, she’s a beautiful girl!
Like you, I was once heavily into the ‘do whatever it takes to cure’ belief system too but like you, we realised that there wasn’t actually anything wrong with our daughter.
Your experiences with the Adams chelation study are fascinating and show the power of media manipulation very well.
Nice to ‘meet’ you :o)
Comment by Joseph — 14 June, 2006 @ 11:57 am
Mulan is a beautiful girl who appears to be happy too. It’s great when autistic kids are shown like this. Dateline and Autism Every Day, of course, prefer to skip that.
Comment by Jennifer — 14 June, 2006 @ 12:01 pm
What a nice thing for you to do. I hope that you open a few more people’s eyes by writing what you did.
I’m glad you can confirm that the media only wanted to show the “odd” and sterotypically autistic things Mulan does. When I saw the Autism Speaks video clip, the first thing I wondered was how long they had to follow those kids around to get the footage that showed them screaming and melting down. This is a very misleading view, and only goes to perpetuate terrible myths.
And it’s wonderful to hear about Mulan’s progress. I hope you stop by some other time and give us another update.
Comment by Dad Of Cameron — 14 June, 2006 @ 12:06 pm
Jennifer said: “I hope you stop by some other time and give us another update”.
Me too Jennifer, me too. I’ve invited her back - she’s got some insightful material, and beyond that, I know her to have a terrific sense of humor (something the majority of my posts lack). She might be one of the coolest, funniest, most loving parents around.
Comment by mike stanton — 14 June, 2006 @ 12:27 pm
My son did not get a dx til he was 12. By then it was Asperger Syndrome. Now he is 21 and about to start a degree course. But I do know that the trouble we all had when he was much younger, if someone then had said, “It is autism and we can cure it,” we would have been ready to do “whatever” it took as well!
Well Mattie got there without special diets, multi vits, chelation or any biomed at all. Like you I believe that “with a lot of hard work on the parents’ part, discipline, and reality, your child can do a lot!” But the main ingredient for us as I am sure it has been for you, is love and acceptance of our child. Plus he did quite a lot of the work himself, once he understood the situation.
Mulan looks a lovely child. I hope you come back to tell us more of how you are all doing.
Comment by Ms Clark — 14 June, 2006 @ 1:58 pm
Super. What a sweety. I got teary eyed looking at the wonderful girl, Mulan. I have a special place in my heart for wonderful weird people. Bless your habilitation worker for encouraging Mulan to blossom as a weird free spirit and not to be smooshed into a mold that she didn’t belong in. What a good mom you are, Belle. Thank you for sharing your experience, and I’m glad you took Mulan out of the study, the “air” around those people can not be healthy.
Comment by Not Mercury — 14 June, 2006 @ 1:59 pm
Thank You for guest blogging here Belle and thanks DoC for playing host. Mulan sounds like a wonderful little girl and I can tell she is loved and appreciated for who she is.
We were also willing and ready to do almost anything at one time but we now realize life is lot easier without the constant feelings of lost opportunity and to our surprise love and acceptance are much more effective.
NM
Comment by Lisa — 14 June, 2006 @ 3:22 pm
If only more autism parents were like you, Belle. Thanks for sharing Mulan’s story.
Comment by David H — 14 June, 2006 @ 4:52 pm
Belle,
Your daughter sounds like she’s doing great and that’s really wonderful news. It’s good that you were able to make an informed decision regarding your daughter’s care. Too often, I don’t think that is the case for many parents.
I can see your point regarding the Dateline piece. It’s unfortunate that they focus on the negatives. That seems to be a common theme thoughout the news which is why I rarely watch it.
I do take issue with some of your comments. You seem to be saying that the parents who say their children are improving due to chelation, or some other biomedical intervention, are wrong. Just because your daughter has made gains without biomedical intervention doesn’t mean these other children would have made those same gains without it. But hopefully there will be more and more studies to take some of the guesswork out of it.
Comment by Dad Of Cameron — 14 June, 2006 @ 5:07 pm
“Just because your daughter has made gains without biomedical intervention doesn’t mean these other children would have made those same gains without it.”
Hi David H.
It doesn’t mean they wouldn’t either. You’re
asserting[edit: implying] that children make gains because of it - now all you need is some good science to prove it.I agree with you about the news, I rarely watch it myself.
Comment by Mom Of Cameron — 14 June, 2006 @ 7:14 pm
Belle,
Thank you for sharing Mulan’s story on this website. Your words from the past “Mulan beats to her own drum” and “that’s one of the things we love best about her” have resonated in my mind on more than one occassion as I navigated this new world. And to my surprise, I realized that it’s not a new world at all. Not even a different world. It’s the same one I’ve always been a part of. A world full of acceptance and pride and love. Also one of skepticism (which isn’t a bad thing) and negativity (which is a bad thing). Your story exemplifies acceptance. I love my weird little kid too. Funny thing is…he’s the least weird of the bunch!
Mom Of Cameron
Comment by David H — 14 June, 2006 @ 7:41 pm
Kev,
“Like you, I was once heavily into the ‘do whatever it takes to cure’ belief system too but like you, we realised that there wasn’t actually anything wrong with our daughter.”
I just have to ask. Are you talking about focusing on the positive (which I wholeheartedly agree with although I do find it tough sometimes) or are you saying that our autistic children are perfect and you wouldn’t have it any other way? If there was a guaranteed, safe cure for autism would you use it on your daughter?
Comment by Kev — 14 June, 2006 @ 10:32 pm
“I just have to ask. Are you talking about focusing on the positive (which I wholeheartedly agree with although I do find it tough sometimes) or are you saying that our autistic children are perfect and you wouldn’t have it any other way? If there was a guaranteed, safe cure for autism would you use it on your daughter?”
I guess a bit of all those things. I do think its better to focus on the positive. I’m essentially an optimist at heart and the more we accept Meg as an autistic little girl, the easier it becomes for all of us to ‘meet’ each other and hence move forward.
I don’t think anybody is ‘perfect’ because that’s too much of an absolute. Even with rose-tinted ‘dad’ glasses on I recognise that when Meg moans because I won’t let her have any more sweeties that that’s not ‘perfect’ behaviour!
However, in terms of the person she is - she’s equally valid as an autistic individual. I sincerely wouldn’t have it any other way. The more our life with Meg unfolds, the more we see that her autism is a large part of what makes Meg Meg. I would hate to lose the part of her that finds sparkly water in the sunshine fascinating or bouncing on her trampoline to be the best fun in the world.
However, equally, I would not want my other two kids to be autistic. This is not because autism is a less desirable state but because its not who they are. The state of being NT is just as valid as the state of being autistic.
So, no, if there was a guaranteed, safe cure I would not use it on Meg whilst she is a child. What we are trying to do with all our kids is raise them to be happy, confident people who are assured of our unconditional love as we believe this will give them the best foundation from which to make their own decisions as adults.
That means that if Megan aged 18 came to me and indicated that she wanted this hypothetical cure than I would move heaven and earth to make that happen. I might be disappointed in that I would’ve failed to make Meg feel valued just as she was but the decision would be hers and as her Dad its my duty to support her no matter what.
Comment by Dad Of Cameron — 14 June, 2006 @ 10:40 pm
David,
I hope Kev will return and answer your quetsion. In the meantime I’d like to add my two cents.
“Are you talking about focusing on the positive (which I wholeheartedly agree with although I do find it tough sometimes) or are you saying that our autistic children are perfect and you wouldn’t have it any other way?”
Focusing on the positive counts for anyone, and I’m glad to see you concur. And yes, it’s not always easy, that’s just the way life is sometimes. Nobody is “perfect” and to ask if someone thinks autistic children are, implies that you may have some belief that they aren’t and should be. It sounds like you may have a preconceived notion of “perfect”, but I could be wrong.
If there was a guaranteed, safe cure for autism would you use it on your daughter?
I don’t expect you to agree with me, but I’d like to share my opinion that this is really a moot point scientifically. Step 1 for any “cure” would be solid understanding of the etiologies of the autisms. Until then, it’s a rhetorical question and in interesting one. Is autism a defect? I’m not talking about any medical comorbidities. Or is it a difference? If you see it as a defect, you’re expressing a values statement about 1.5 million people in the U.S. alone. I acknowledge that differences present challenges in societal context, but difference and challenge is not reason enough justify conformity for society’s sake - people with autism are human beings.
Comment by Dad Of Cameron — 14 June, 2006 @ 10:43 pm
Sorry David,
I missed Kev’s post while I was writing my comment.
Comment by Phil Schwarz — 14 June, 2006 @ 11:25 pm
Belle,
You have a beautiful little daughter!
I’m the father of a somewhat older (17-yo :-)) daughter, Rachel, who’s in the broader autism phenotype, and of a 15-yo son Jeremy, who is autistic. I’m an Asperger’s adult myself, married to Susan, whom I tease for being the family’s token neurotypical :-).
I encourage you to come by and hang out where more of us with the same positive attitude about our kids and about living life autistically tend to congregate. There is strength in numbers :-). The Autism Hub of blogs (http://www.autism-hub.co.uk) is one such place, in cyberspace; in face-to-face space, if you can get to Philadelphia the last week of June, or Toronto in mid-October, you might want to check these conferences out:
Autreat 2006, June 26-30, Philadelphia - http://www.ani.ac
The Joy of Autism Exhibition and Lecture Series, Oct. 10-16, Toronto - http://www.taaproject.com
If you are a member of the Autism Society of America, there will be an active contingent of folks like us, an island of sanity in the midst of an ocean of conferencegoers, at ASA’s 2006 conference in mid-July in Providence, RI. I will be moderating a panel session titled “We Are Family”, of parents of autistic kids who are ourselves on the spectrum.
One of my co-panelists is the memoirist and scholar Valerie Paradiz, whose book _Elijah’s Cup_ is a must-read. Back when its first edition came out, I wrote a review that you can find on autistics.org, another cyberspace resource for folks like us. The review is at http://www.autistics.org/elijahscup.html ; the book has since had a second edition published by Jessica Kingsley Press. Check out more of the stuff Valerie is doing at http://www.valerieparadiz.com , including the innovative secondary school for kids on the autism spectrum she founded, the School for Autistic Strength, Purpose, and Independence in Education. More connections to folks who respond to autism the way we do.
In 2007, ASA’s annual conference will be in your neck of the woods, in Phoenix. If you go, and you look hard enough, you will find us amid all the “normal” parents. We kinda tend to stick out ;-). And stick together :-).
I am very glad you have joined us, and shared your story and Mulan’s with us!
– Phil Schwarz
Vice-President, Asperger’s Association of New England ( http://www.aane.org )
Comment by Dad Of Cameron — 14 June, 2006 @ 11:58 pm
Hi Phil,
You know I’m glad you’re here with comment, but please remind me to talk with you about GPC-ASA before 2007.
I did hear from Belle this evening, and she indicated that she should be by to say hello at some point soon.
Comment by Belle — 15 June, 2006 @ 12:04 am
Nice to meet you all, and many thanks for all the kind words.
DoC—You’re way too nice and flattering of me. Thank you, but don’t totally believe him, I can be just as mean and ornery as the next person, just ask my family!
David H.– I am not saying “that parents who say their children are improving due to chelation, or some other biomedical intervention, are wrong.”
I am saying that when they give all the credit to the above, it’s wrong. I refuse to believe they are only doing biomedical treatments. It’s when I see parents go on and on about the treatment, but don’t mention all the other stuff they do, or even how they parent. Then I laugh to myself because my child is doing as well, if not better, and I won’t tell you it’s because at one time she did 25 hours a week of ABA, 12 hours of preschool a week which included 1 hour of speech and 1 hour of OT, and 1 hour of vision therapy, plus 1 hour of speech, 1 hour of OT, 1 hour of music therapy, and 1 hour of hippo therapy outside of school. I will tell you that I firmly believe these all helped her, but I don’t give them all the credit and the cure all that what every family should do. Her siblings pay a big part in how well she is doing, and I won’t go around telling families to keep procreating to cure their child. There is more to it than one treatment, and I would love to see how well these children would’ve been doing without the biomedical treatments, but that is not possible, so the parents who go around attributing their child’s recovery due to chelation or biomedical treatments crack me up.
Comment by Bartholomew Cubbins — 15 June, 2006 @ 5:06 am
beautiful kid and some wonderful remarks. thanks for sharing.
Comment by mike stanton — 15 June, 2006 @ 1:14 pm
“I am not saying “that parents who say their children are improving due to chelation, or some other biomedical intervention, are wrong.”
I am saying that when they give all the credit to the above, it’s wrong. I refuse to believe they are only doing biomedical treatments. It’s when I see parents go on and on about the treatment, but don’t mention all the other stuff they do, or even how they parent.”
Belle
when you said this it reminded me of something I wrote a long time ago.
Children with Autism typically inhabit a world of chaos, our world. Their impaired ability to share in our common sense interpretation of experience leads them to impose their own uncommon sense of order and meaning. This can lead them to act in ways that are quite at odds with our ideas of appropriate behaviour. So we cajole, threaten, plead and generally respond in ways that add to their confusion and confirm them in their own version of reality. We seem quite mad and not to be trusted.
Then their Autism is recognized and we change. We follow more consistent programmes of behaviour management. We stop punishing them for non-compliance. We lose our sense of powerlessness and frustration. We think we know what is going on now and are calmer and more predictable. We may start them on a course of medication or a special diet or visit a therapist. We begin to lose our own guilt and anger and no longer project them subconsciously onto our offspring. And they improve. Surprise! Surprise! They may still be autistic but their autism is no longer so disabling and we are able to enjoy our children and teach them to enjoy us.
I think we are on the same wavelength, you and I.
Comment by bonni — 15 June, 2006 @ 7:43 pm
There are stories from a long time ago about fairies coming and taking a human baby and leaving a fairy baby in its place. I don’t actually believe in fairy changelings, but I think it’s an apt metaphor for autistic kids.
They struggle with this mundane, strange world full of weird stuff that they can’t understand. The language is strange to their little fairy ears, the customs and habits are strange, it’s all just as bizarre to the fairy child as the fairy world would be to ordinary people.
With time and effort and patience, a fairy child can learn to adapt and can even thrive. Recognizing that the child is special, unique, weird, funny, eccentric, odd, beautiful… These things can’t do anything but HELP him or her adjust to their environment.
Of course, they’ll always be fairies…
Comment by María Luján — 18 June, 2006 @ 8:11 am
Hi Mike
Please allow me a bit of off topic here.
I wish you a Happy Father´s Day
Best Regards
María Luján
Comment by María Luján — 18 June, 2006 @ 8:48 am
Sorry Dad of Cameron, the last post was for you
Comment by Dad Of Cameron — 18 June, 2006 @ 8:59 am
Hi Maria, Thank You.
And to all the fathers - Happy Father’s Day!
Comment by give a mouse a cookie — 18 June, 2006 @ 9:40 pm
For Belle-
First off, “Mulan” is such a cutey! What a happy kid.
Secondly, thank you for your story. We share a lot of the same ideas and attitudes toward our kids. I have the same feelings about parents who attribute any progress their child makes to biomedical treatments.
My son is almost five and doing so well with none of those treatments. We have a loving and supportive family with a positive attitude and the ability to laugh at ourselves–a LOT.
I wish you, “Mulan” and your entire family only the best. From the sound of things, you’ve got it already.
Give your kids a squeeze for me….they are lucky to have you.
Comment by so much for mercury — 19 June, 2006 @ 3:38 pm
Thanks Belle, from another parent with the same attitudes, but fortunate enough to live somewhere where I was unable to to have access to the temptations of a “cure”. My son is doing so well, I “can’t believe it” in the same way you describe, after having listened to all the doom and gloom over the past 9 months since diagnosis. Just this month, in fact, he has suddenly begun saying words - dozens of them. Why? Who knows! We’re not doing any biomed, and only about 2 hours a week of professional therapy. The rest of the time we’re just behaving as an average family, and giving him all the attention and love that we can. Plus a little “floortime”, but nowhere near the recommended hours per day. I can not think of any single thing that I could credit for hs recent accomplishment, but if we were doing some sort of therapy, it would be so easy to attribute his success to that. Because every parent is involved in some sort of therapy, it’s only logical that all therapies have all kinds of anecdotal support. But in the end, perhaps it’s all just the child, and they key is to just nourish the child to bring out his or her potential?
Thank you so much for sharing your experience.
Comment by ebohlman — 19 June, 2006 @ 5:32 pm
so much for mercury wrote: Just this month, in fact, he has suddenly begun saying words - dozens of them. Why? Who knows!
Actually, science knows. Speech production isn’t the product of a single neural system; it’s the result of many neural and muscular systems all working together. In any kid, autistic or not, it takes time for all these separate systems to jointly reach the level of development necessary to produce speech or progress in speech. So a kid’s language development is going to appear to take place in spurts rather than as a slow and steady process, even though the actually underlying neurological development is occurring gradually.
Think of a symphony orchestra that’s starting out completely from scrach; none of the players initially know how to play their instruments. Under the direction of qualified instructors, they practice intensively and gradually learn how to play. But the orchestra still can’t produce anything that sounds like music. The players continue to improve, and one day, voila! music! To an outside observer, it looks like some sort of special, discontinuous event must have produced the change; we all have built-in prejudices of thought (what Francis Bacon quite eloquently called “idols”) that make us look for Big Causes. But in fact there was no such event; the difference that enabled the orchestra to finally produce music was one of degree, not kind.
The same holds true for just about any aspect of a child’s development: physical (”growth spurts”, cognitive, social, linguistic, or emotional); the pattern seen is long periods of “no progress” followed by “sudden leaps.” Yet this pattern is the result of an underlying process of slow, steady, gradual development; we just can’t see that development directly.
When a child is developing typically, we don’t really think all that much about this; we act like the kid has some sort of built-in calendar that’s directing his development. But when a kid is autistic or otherwise developing differently from the published schedules, we get seduced by our “idols” into thinking that the developmental events that he does experience must have Special Explanations, such as the interventions we’ve been performing. In reality, we’re just seeing the normal (but wonderful) process of oridinary development, just not following the schedule we’d expect. But the temptation is strong to think that the whitewater rafting trip the orchestra members all took was what made them capable of playing Beethoven’s Fifth. As Prometheus always points out, autism involves developmental delay, not developmental stasis. Assuming the latter turns ordinary, predictable (but still wonderful) events into apparent miracles that require gratitude to be directed somewhere.