


AOL Health Interviews Kim Stagliano
Those are my "crapisode" gloves from the Autism One dinner and auction last Spring. Pretty fancy, huh? Ms. van der Leun did a terrific job with this interview and I thank her. I particularly appreciated her questions about the criticism I (we) face for using biomed treatments and and seeking a cure.
The Mother of Three Autistic Children Shares Her Story: From AOL Health HERE.
By Justine van der Leun Mar 4th 2010 5:00PM
Connecticut-based stay-at-home mom and autism advocate Kim Stagliano chronicles her trying and illuminating daily experiences raising her three daughters with autism on her eponymous blog. In her other venues -- she's the managing editor of the Web site Age of Autism and blogs at The Huffington Post -- Stagliano argues alternately for research for a cure, government funding for children with autism and their families, alternative therapies and biomedical interventions. She is also the author of a forthcoming memoir. AOL Health asked Stagliano for her take on the joys and challenges of being a parent to children with autism and what she says to her critics.
AOL Health: You have three daughters, all of whom fall on the autism spectrum. What do you believe caused or contributed to their autism?
KS: The million-dollar question. I think we have a genetic predisposition to environmental insults, which could include vaccines, toxins, my husband and my heavy metal load, the quality of my breast milk and unknowns.
AOL Health: Over the past 15 years, what treatments have you tried with your girls, and how have they responded to them?
KS: The GFCF [Gluten Free Casein Free] diet has been our best treatment. The diet has helped with stomach problems, which, in turn, has greatly cut down behavior issues. It also helps the girls sleep through the night. Imagine taking a test on a day when you have terrible cramps or a headache. How well would you do? We've also used a number of biomedical treatments -- supplements, vitamins, other natural products -- that have helped the girls function and feel better.
AOL Health: On your blog, you contend that autism is curable and that your role as the mother to children with autism is to "get rid of it." Can you explain your perspective?
KS: Every mom wants to make her child's path easier to travel -- whether it's tutoring to get better grades for college admission or weight-loss camp to address health issues or trying to ameliorate the undesirable behaviors and pain associated with autism. Autism affects every aspect of my children's lives. I'd be remiss if I didn't try to help them.
AOL Health: How do you respond to parents and adults with autism who believe that individuals should be celebrated for their different "way of being" and not cured?
KS: I respect every parent's desire for his or her own child. But I don't confuse my children's wonderful personalities -- loving, kind, funny -- with the very real deficits they face from their autism. Not being able to speak and make your needs known is not the same as having a quirky personality. And traits that are endearing in a 6-year-old may not be so at 21. I try to look at what my girls will need as adults and after their Dad and I are gone. They need to be able to function as well as possible for their health, safety and well-being.
AOL Health: Studies show that 10 percent of kids can recover with intensive behavioral therapy, while no studies have shown that biomedical treatments like chelation have any effect on kids with autism. Knowing that, do you support putting a child through potentially dangerous and sometimes painful treatments -- and if so, why?
KS: I find the assumption that biomedical treatments are potentially dangerous and painful misleading. Risperdal, the approved drug for autism, has atrocious side effects, but no one seems to mention that. Some behavioral centers use aversive therapy, including shock treatment, on children and young adults with autism. I find that abhorrent. The majority of the biomedical treatments are based on healthy, pure food; vitamins and supplements. Where there are prescriptions involved, that's under the care of a doctor. No one questions parents who allow their children to undergo chemotherapy with known side effects, and yet in autism, we are expected to let our children languish and remain in pain. It makes no sense to me.
AOL Health: As someone outspoken and opinionated, you've received criticism in autism circles. What do you say to your critics?
KS: Come live in my household for a week.
AOL Health: Raising three children with autism is clearly challenging. Do you get any help? How do you cope?
KS: There is very little help available. My husband is fantastic with the kids, and that's a big plus. I cope because I adore my girls and I love being their mom. And I am actively involved in improving their lives and the lives of others with autism. When you take control of a situation, it empowers you to feel confident and hopeful. Plus, to know that I am helping other families gives me a huge boost. Some days are easier than others; I'll admit that.
16 Year Old Blinded (Bilateral Vision Loss) After Gardasil Vaccination
I assume this headline, "Girl Blinded by Gardasil Vaccine!" is in your newspaper today, on the front page, as every case of measles, mumps and chicken pox is reported. Will the doctors at Connecticut Children's Medical Center be hailed as heroes or villains, and run out of town on a rail for publishing this report like a certain doc from the UK who raised a question about MMR? Heroes, I hope.
How dreadfully sad for this child and her mother, who I'm sure is heartbroken and guilt ridden. Let's pray the damage is reversible. When Walgreens advertises flu shots l on TV or when PBS tells you, "Go Get your H1N1 Vaccine" after an episode of Arthur, they are not required to share side effects. Protect your daughter? Of course. We all want to do that. Oh, and Merck is lobbying for Gardasil for boys on the routine vax schedule, so get ready to protect your son too. The .pdf from the journal is HERE.
A 16-Year-Old Girl With Bilateral Visual Loss and Left Hemiparesis Following an Immunization Against Human Papilloma Virus
Francis J. DiMario, Jr, MD
Departments of Pediatrics1 at Connecticut Children's Medical Center, Hartford, Connecticut, fdimari@ccmckids.org, University of Connecticut School of Medicine, Farmington, Connecticut
Mirna Hajjar, MD
Department of Neurology at Hartford Hospital, Hartford, Connecticut
Thomas Ciesielski, MD
Department of Pathology at Hartford Hospital, Hartford, Connecticut
We report the course of a 16-year-old girl who presented with near complete visual loss associated with chiasmal neuritis and a biopsy proven tumefactive demyelinating lesion on magnetic resonance imaging (MRI) in association with a recent immunization against human papilloma virus.
Key Words: demyelination • tumefactive • blindness • chiasm • HPV
Journal of Child Neurology, Vol. 25, No. 3, 321-327 (2010)
DOI: 10.1177/0883073809349322
Managing Editor's Note: An Age of Autism reader named Allison T. sent us this lovely poem by her daughter. Congratulations, Carolyn, on winning the Northern Virginia Award of Excellence for Literature. You're a wonderful little sister to Jackson.
Artist's Statement:
My brother Jackson inspired me to write a poem. He has autism and I think that makes him beautiful because he is different from other 10 year old boys. And being different is beautiful. I always feel safe with him around because he is not a bully. He does not pick on me like most older brothers or boys do. He is kind to me. He makes me happy and plays with me. I trust him to always love and care for me. He has a good heart.
A brother named Jackson
Understands the way things work
Tells his feelings
Is always respectful
Special to me
Makes great movies on his video camera
Is not a bully
So kind
Before I was born he did not have autism
Every time I show up, he is happy
Always nice to little kids
Usually he doesn’t need help with work
Tells the truth
Is in control of himself
Follows directions
Unbelievable kid
Listens to music once and he can copy it by heart
Caroline T.
2nd Grade
Sleepy Hollow Elementary
CDC Did Not Properly Screen Medical Experts for Financial Conflict of Interest on Vaccine Safety
If there's one story the NYT has avoided, it's vaccine safety. No matter how many drugs they'd "out" for being dangerous, needing recalls, or pharma ghost written studies or their myriad other hard hitting journalism about pharma, vaccines were always the Virgins in Church, piously pristine. Maybe not.
Read the full article by Gardiner Harris in the New York Times, HERE.
WASHINGTON — A new report finds that the Centers for Disease Control and Prevention did a poor job of screening medical experts for financial conflicts when it hired them to advise the agency on vaccine safety, officials said Thursday.
Most of the experts who served on advisory panels in 2007 to evaluate vaccines for flu and cervical cancer had potential conflicts that were never resolved, the report said. Some were legally barred from considering the issues but did so anyway.
In the report, expected to be released Friday, Daniel R. Levinson, the inspector general of the Department of Health and Human Services, found that the centers failed nearly every time to ensure that the experts adequately filled out forms confirming they were not being paid by companies with an interest in their decisions...