This is the first in a series of articles in which parents describe how their children developed autism. Today, a talk with Kathryn Wolcott. If you are interested in participating, please e-mail me at Olmsted.email@example.com
Dan: I have not done this series before, this conversation, so I appreciate your being the first one and talking to me. I wondered if you might just go over a little bit about your situation, where you live, what you do, what your family's like and maybe we can talk about what happened with your daughter, Norah.
My husband and I live in Jackson, Michigan, which is just south of the capital of Lansing. We both went to Michigan State University. We grew up together and got married after college. I actually went to school for communication, and then my master's degree is in health communication and I studied epidemiology and public health. After my daughter was born I did my master’s thesis on the CDC's vaccine schedule and how Jenny McCarthy was ruining public health as we know it and how vaccines absolutely do not cause autism.
Dan: You can't be serious.
Kathryn: I'm very serious, which is why this is such an interestingly ironic situation. Of course I got all my information from the CDC itself. I was gung-ho about making sure everyone in my family got their flu shot and my daughter was vaccinated on schedule every single month and there was no delaying or anything.
We found out we were expecting after we'd been married for about two and a half years, and I heard someone talking about the vaccine-autism connection and of course I just totally blew it off, "Of course it doesn't cause autism, it's just better diagnosing and that will never happen, because I'm having a girl and girls don't get autism as much as boys do." I got the flu shot while pregnant, everything.
She was born 39 weeks. I was a planned induction, which was another big regret. She was developing fine really. I nursed her ... We had a little bit of struggles with breastfeeding at the beginning. She got Vitamin K at birth, and then two weeks in, the hep B, and she got sick, and I mean like fever.
Then we started noticing some GI issues and she was having horrible constipation and screaming and gas, which is unusual on a breastfed baby. I cut dairy and that seemed to help a little bit until we got to the two month shot and she got sick again with the high-pitched screams, the fever, all of it. Of course I pushed Tylenol like you wouldn't believe.
She got her four-month shots, same thing -- fever, screaming, but she seemed to be fine. Then between the four-month and the six-month shots, her head circumference went from the 25th percentile, which is where she was because she is little, to the 90th. That should have been a red flag for me, but retrospectively I know now.
Dan: Was that noticeable to you or is that something that the doctor noticed when he measured or what?
Kathryn: They did it at her well-baby check and they said, "Wow, that's interesting her head really got bigger." They did an exam and she seemed to be alert and fine and we weren't noticing any other side effects, other than her GI issues, which got better with me cutting dairy out. I remember asking if it was okay and they said, "You know sometimes it just happens, they all grow differently." I remember this was when I was starting to research a little more because I was like, "This doesn't seem normal to me for her head to get that big that fast."
Then at her six month appointment we of course vaccinated again and this time she got really sick and it was on a Friday. I remember it very specifically. She had fever, vomiting, wouldn't eat for two days, so we took her to the ER. We finally got her to eat and they sent us home with Tylenol, of course, and I took her back to the pediatrician.
Dan: Let me ask you this, when you went to the ER, did you say, "I think she's had a reaction to her shots?"
Kathryn: Absolutely and they told me that it wasn't. They said it was a coincidence, that she had a viral infection. It was a coincidence.
Dan: Got you, yeah.
Kathryn: No, it was never recorded as a vaccine reaction.
Dan: You clearly saw that happen?
Kathryn: Absolutely. I took her to the pediatrician on Monday and they told me the same thing, that it was a coincidence. At that point I decided to start slowing down with the vaccine. She didn't get any at her 10 month and then at 12 months I said, "You know, she had a bad reaction last time, so let's slow down." I never did the 12-month ones, which would have been MMR and varicella, I believe. She has never had those.
Then at her 12-month I found out I was expecting my second child and her pediatrician at that time told me that I needed to wean her at 12 months because I was pregnant. I didn't agree with that, so I switched pediatricians. Now the pediatrician I see is supportive that we don't vaccinate. At this point I think it was already too late, and about 13, 14 months is when we started to notice some delays. It was a slow regression. She did get another vaccine at 15 months because I just decided to do one at a time then. I can't remember, I think it was Hib or or DTaP.
It was slow. It was, she had a few words and slowly she was not saying them as often. She's always had really stellar eye contact and she still does. She's two and a half now, not even two and a half. Her eye contact is good. Her GI issues got progressively worse though and that's what we were really starting to notice, so we focused on that. We thought that that was the issue. She wasn't adding any new words. Physically she was fine, she was walking and crawling and all that. No pointing.
We took her to an allergist. The allergist did an IgG test and she is sensitive to gluten and casein and soy. He gave us a probiotic and said, "Cut these things out." We did that and her GI issues did get a little better, but not a whole lot. Then I started asking the pediatrician about autism and he said, "Well she responds to her name and she's social, but she's not talking." Then we started to notice some repetitive behaviors and just little things and focusing a little too long on a toy or little things like that.
Then she was officially diagnosed, they brought it to our attention about 21 months. It was a few months after that last vaccine and then she hasn't had any vaccines since then. We actually cut pretty much all medications; we stopped giving Tylenol for fevers.
Dan: How is she doing right now? Is she just sort of plateaued and is autistic or what's the ... How would you say?
Kathryn: We have started some biomedical intervention. We found a local doctor who actually takes insurance, which is great, and he's a Dan! doctor. Our pediatrician works with him, they're a team and I feel really blessed that we have that. We've started some supplements and yeast treatment and she's getting better. We started ABA and sort of like a natural environment ABA, so I'm a little more comfortable with that. Speech and OT have yielded nothing. The biggest gain for us has been treating some of that gastrointestinal yeast.
Dan: So this is still recent. My goodness. This has all just happened in your life really.
Kathryn: Oh man, I hit rock bottom there for a while because I knew, and I just knew what it was, and I knew better and I just blew it off. We actually went to Autism One right after she was diagnosed because we're not too far from Chicago, and I heard Dr. Wakefield speak and it was pretty life changing.
Dan: How so?
Kathryn: My son, he's nine months ... We had a new baby and she was getting diagnosed and it was pretty intense there for a while. He's not vaccinated at all, which has been so much better.
Dan: Let me ask you this, because this is the kind of thing we come up with all the time, so just I'm interested how you think it through in your head. Why do you think that the vaccines had anything to do with this?
Kathryn: Research obviously. I read about mercury and aluminum and the similarities between these symptoms of these things and autism, and the fact that it's a spectrum and it's all about timing and it affects everyone differently. It's just screaming in my face that it's all related. Do I think it was a direct cause? No, but I think it was just kind of like the icing on the cake and it just sealed the deal.
We have a huge family history of autoimmune diseases – huge. I mean every woman in my family has some sort of thyroid issue and there's diabetes, and Hashimoto's and scleroderma. I wish I would have known to think about that beforehand. I mean, doctors ask you all these things, family history questions, but then they don't really do anything with the information after you say it.
Dan: Yeah, I guess because they say the vaccines couldn't possibly have any role in this and therefore what difference does this make? It sounds like each time Norah got sick, and sicker than the last time.
Kathryn: [The new doctor] noticed that she got sick, based on her records, after every well-baby visit. Based on her food allergies he was like, "I think there's a connection between food allergies and vaccines." He's like, "I would slow down and wait until she's school age. If you still want to vaccinate, slow it down and wait until she's old enough and developing an immune system." I'm so glad I found him. He doesn't vaccinate his own children. That really got me thinking: My doctor doesn't vaccinate.
Dan: Does he think that the vaccinations caused the allergies to manifest, the food allergies?
Kathryn: Oh yeah. He told us that when I first met him.
Dan: It's interesting to me that there is something going on here besides the MMR since she didn't have that, obviously.
Kathryn: Right, and that's what I kept telling myself, "It can't be autism because ..." We went through everything, we had her hearing checked and we went through the ringer with that. Nobody ever did any tests other than psychological testing. No one ever did anything other than observe, which is bizarre to me.
Dan: When you got that flu shot during pregnancy, do you know if it had mercury in it or not, looking back?
Kathryn: I have no idea, but I'm assuming that it did. It was right about at 20 weeks, 22 weeks, right at that critical time.
Dan: You can find out if you ever wanted too, but I think you're right that most adult flu shots, unless you ask otherwise, have mercury in them, you know? People will say, "Well, you know there's no more mercury in vaccines" -- well except for the one you got when your child was in a critical period of pregnancy.
Kathryn: Yes, a critical neurological development period.
Dan: You're sense, I take it, is that along with the autoimmune issues in your family, then the flu shot and the vaccination right out of gestation, those things really did this.
Kathryn: Oh yeah. Knowing what I know now, I think that she never had a chance because with all this history ... It makes me sick.
Dan: Of course. I can only empathize with that.
Kathryn: Other than her vaccinations, she has never been sick. She never even really got a cold, never on antibiotics. It's the only thing.
Dan: She never had any antibiotics at all?
Dan: That's interesting too because sometimes there seems to be an indication that can really play into it, but obviously not here.
Kathryn: Yeah and she's got some pretty intense yeast issues and our doctor, our Dan! doctor, he says he's never seen it so bad, especially in a child who’s never had an antibiotic, which tells me that she had it from birth.
Dan: Does that reflect an immune system that's not working well?
Kathryn: Exactly, it reflects that her immune system is compromised. In some respects, he's suspecting hyperimmunity because she had never been sick, so her immune system is working just a little too hard.
Dan: You know it's interesting to think about your situation where you were not long ago an expectant mother, and before that a college student who was talking about how linking vaccines and autism is not true and there's no evidence for it. One reason why I'm trying to do these series of interviews is to convey that yes there is evidence and a lot of people who have had very hard experience with it now. What would you tell someone who believes as you did about this that there is just no link, it's been disproven, it's only Playboy models that say this and it's coincidence and you're looking for someone to blame, that kind of thing?
Dan: What would you say?
Kathryn: I would say that as much as I know about research, I know that it's very easy to make the numbers look how they want them to and it's on either side. If you do know about research you know how easy it is for these pharmaceutical companies to make it look in their favor, regardless of where it comes from. I would suggest that when they are researching that they look to see where the money came from -- that makes a huge difference.
Also, this movement is so much bigger than Jenny McCarthy, and I didn't know that through this. I know that my evidence is only anecdotal, but it's all that I need at this point and I think other moms are the same way. My college self would have not believed anything that I'm saying, but once I had that baby that I wanted to protect, you really need to do your research that doesn't just come from the CDC, and that made the biggest difference.
Dan: As a journalist, I personally find it hard to believe that we're in a situation like this where so many parents like you, from all over the place, who had no reason to make stuff up, who are very smart and very informed and are trying to tell the truth here, that it butts up against this idea that it's all quackery and nuttiness. It's really quite extraordinary to me, and I can't believe that it continues to go on. It was right around 2000, there was a very clear point at which the government got concerned about the mercury in vaccines, and said they would get it all out, you know? Then here we are 12 or so years later and you're getting that shot and it may have started a cascade that didn't need to happen after all this time and I just ... Boy, it's tough isn't it?
Kathryn: Yeah. Another point -- it's absolutely growing. There are four people that I went to high school with, and we're still in touch and three of us have kids on the spectrum.
Kathryn: That is just unbelievable to me. Mine being the youngest, but I mean, seriously? When I was growing up I knew one person in our entire school of over 1,000 that had autism and that wasn't even that long ago. 20 years ago? 15 years ago? Something is going on, and why don't people care is what I want to know. Nobody really seems to care.
Dan: Yeah, why don't they?
Kathryn: Until it affects them, which it will soon.
Dan: Why don't people care? I think they don't believe it, I guess. I think if they believed that 1 in 68 children born 8 years ago was being seriously harmed by a government program, they'd be up in arms. I can't believe people are so self-centered that they're just deciding the odds are good enough and they'll just risk it and not worry. I don't know, I can't believe that.
Kathryn: (Long pause.) This is where I lose all my sense of my words, because I just don't know. I don't know why I was that person before. I don't know. The lies that I have come to find out now are just astounding to me. We had to sign a waiver for my daughter to get services through the school about why we weren't continuing with our vaccination schedule. We actually had to go to the health department.
It was probably one of the most insulting things I've ever sat through. She said I didn't know anything about research and they handed us this pamphlet about how autism and vaccines aren't linked at all and Andrew Wakefield was a quack and how regressive autism, if we noticed any sort of regression, it was in our heads, it didn't really happen
Dan: It’s just beyond comprehension that they have to lecture you on what you saw and what happened to your child isn't their fault. It's your fault, whatever.
Kathryn: And it was in my head. We imagined it
Dan: Where are you heading in terms of your life with this new reality for you? Are you hoping that you will have a fully recovered child? Are you going to change the way your career is going or any other thing?
Kathryn: Absolutely. It's changed everything for us. We've become much more organic and toxin free in our household. We've decided to home school. It's made that decision for us just because I'm not really comfortable with the whole public school setting ... not even just vaccines but all of it. It just seems so government mandated all the time and I'm not comfortable with that. My career path absolutely has changed. I at one time had dreams of working for the CDC and now I would like to be as far away from it as I can.
Dan: Are you working outside the home now or are you ... You've got two kids.
Kathryn: I do, I work for a local community college and I teach communication classes there, part time. My husband works for Blue Cross, Blue Shield so we're pretty inundated in the medical.
Dan: You at least have good insurance anyway.
Kathryn: If anything, that's been very helpful. It's changed our entire life. My son is not vaccinated. I'm an advocate now, I'm not quiet about my beliefs, be it on social media or with friends. I don't know if I've actually lost friends, but people have started to distance themselves a little bit, but I've also had a lot of people who've asked me questions, so I think it goes both ways.
Dan: Well, you're already finding you get a whole new circle of people who somehow seem a lot more interesting and engaged and passionate not only about their kids but about everybody else. I know several people who have said through autism they've met some of the best people they've ever met in their lives, and they wish they never met any of them, you know?
Kathryn: Yes. That is one plus to it. Yes I do have 100% hope that my daughter will be recovered. I have to have that belief because that keeps us going every day. It keeps us going to believe that she will be recovered. I think there is a good possibility. I mean she's making tremendous strides and we've only been doing this for a few months.
Dan: A lot has happened for the good already and you're with the right people to do that. I've written about people who have made huge recoveries in their early teen years and gone on to be quite functional and happy, and so you know, it's one of those things.
Kathryn: It's just finding the right combination of things, I think, because they are so different that you don't know the timing of what caused it all. I have faith that most people will be able to find something that helps their kids get better in some capacity.
Dan: I think that's so true. Well, this has been a great conversation.
Kathryn: Thank you for hearing me out. It has helped me too. I would love to share that all over the world.
Dan Olmsted is Editor of Age of Autism. Olmsted.firstname.lastname@example.org