AOL Health Talks to Kim Stagliano About Raising Three Girls with Autism and Treatment
Posted Mar 07 2010 12:00am
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.
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.