Dr. Gwynette: Hello everybody and welcome to the Autism News NetWORK podcast. My name is Dr. Frampton Gwynette and I am a psychiatrist at the Medical University of South Carolina and I am here with Dr. Amanda Eblin, one of our Autism News NetWORK directors, and welcome Dr. Eblin.

Dr. Eblin: Hi, how are you?

Dr. Gwynette: I’m good. And so tell us about your role at the Medical University of South Carolina.

Dr. Eblin: Yeah, so I’m one of the psychiatric nurse practitioners at MUSC, so I’m a nurse practitioner with a specialization in psychiatry.

Dr. Gwynette: Awesome. You joined us in July and honestly since you started, it’s really been a great help to the News Network because you and I run the weekly Autism News NetWORK groups, don’t we?

Dr. Eblin: Mm-hmm (affirmative), we do.

Dr. Gwynette: Yeah, it’s been pretty fun.

Dr. Eblin: Yeah.

Dr. Gwynette: I was going to get to the topic that we were supposed to discuss, which is vaccines and autism, but maybe just start out, you can just tell me a little bit about your observations of being involved with the News Network. What is it about working with this group of patients that’s so exciting and rewarding?

Dr. Eblin: What I really enjoy about working with the group of patients is they’re able to really practice their social skills during group every week, such as interviewing other people, practicing, coming up with questions, having to plan things out. So it’s really been amazing to watch their progress each week.

Dr. Gwynette: Yeah. And one of the things that you’ve added to our program is social skills and tell us about the social skills that you’re helping us emphasize.

Dr. Eblin: So we’re trying to emphasize weekly responsibilities with the patients and giving them individual roles to help them with executive functioning skills like planning, organizing, things like that. So each patient has their own role. So we have a social media coordinator, we have a-

Dr. Gwynette: Shout out to DQ.

Dr. Eblin: Editor in chief of our newsletter, we have a couple of film editors. So it’s been going great.

Dr. Gwynette: And for our audience these are all participants who have autism.

Dr. Eblin: Yeah.

Dr. Gwynette: And so they are generating the content about autism from their viewpoint, which is really cool. And so you mentioned that we have different roles and I know you were instrumental in getting the newsletter out and we talked about executive skills because it’s one thing to have an idea for a newsletter and to maybe scribble a little something down, but can you take us through the steps of making sure that that’s happened and responsibilities and accountability?

Dr. Eblin: Yeah, sure. So one of our patients, she’s our editor in chief of our newsletter, so she’s really helped us start the newsletter app. So she wrote up the newsletter for us, gave it to you and I to look at and edit and we’re able to print it with the university press and give it out to patients and their family members and staff members. So it’s been great.

Dr. Gwynette: Yeah. And it’s been a lot of back and forth. When you come up with even something like a two-page newsletter, there’s a lot of revisions. Right?

Dr. Eblin: Mm-hmm (affirmative).

Dr. Gwynette: A lot of feedback and it was really a team effort. Yeah, so that was a great, I think, result. When’s the next newsletter coming out?

Dr. Eblin: That’s a good question. I think our editor in chief was working on that for us right now this week.

Dr. Gwynette: Okay, awesome. And we are working in a big goal in our groups in terms of devices and accountability. Can you tell the audience about that?

Dr. Eblin: Yeah, sure. So electronic media is really popular with the younger generation and we have a lot of people that are in their early to mid twenties that are in our group and sometimes the cell phones or being on the computer can be a distraction to other members of the team. So we’ve been trying to work on cutting back on cell phone use, electronic use-

Dr. Gwynette: During the groups?

Dr. Eblin: During the groups to kind of help improve social skills. Sometimes it takes away from the group if they’re on their cell phone or on their laptop and they might not realize that and sometimes it can come across as they’re not engaged in the session when they might totally be engaged with a session, might be listening. That’s part of social skills development too.

Dr. Gwynette: Exactly. Yeah. So that’s been a nice addition and we’re seeing reductions in the use of devices during group. If you can imagine a group of about 10 or 12 people in a room trying to have a meeting and discuss various projects and about half of them are on devices, it can be challenging. Right?

Dr. Eblin: Mm-hmm (affirmative).

Dr. Gwynette: And I personally had a hard time kind of setting limits and you’ve really helped I think reinforce that point. And they’re responding to the challenge, aren’t they?

Dr. Eblin: Yeah, for sure.

Dr. Gwynette: Yeah, it’s really great. Okay. Well, we were going to go on to a very, I think, shouldn’t be a controversial topic, but it still is. It’s autism and vaccines. And you did a little bit of research on this topic and the controversy kind of stems back all the way back to 1998. Right?

Dr. Eblin: Mm-hmm (affirmative).

Dr. Gwynette: Can you update us a little bit about what happened?

Dr. Eblin: Yeah, so this controversy started I guess in the late 1990s by a British GI physician. He had published a paper with 12 patients, I believe, there’s a link with MMR and autism.

Dr. Gwynette: And what’s NMR?

Dr. Eblin: MMR, measles, mumps, rubella.

Dr. Gwynette: Right.

Dr. Eblin: And 12 patients is as you know, because you’re in research that’s a really small population size. Normally you need thousands and thousands of people to make a good definitive conclusion. And they ended up doing tons of studies on autism and vaccine shortly after the paper was published and the paper ended up getting contracted from the journal they published it in.

Dr. Gwynette: Yeah. So it was published in the Lancet, which is actually a really big journal in the world of autism. And long story short, they pulled that article. They like retracted it and I think there were some concerns that the data wasn’t even accurate. Is that right?

Dr. Eblin: Yeah. I believe so as well.

Dr. Gwynette: And I believe the physician who wrote the article lost their license in the UK because the data was potentially falsified. So nonetheless, the bill had been run. Right?

Dr. Eblin: Yeah.

Dr. Gwynette: And what have we seen in the 20 plus years since that article came out?

Dr. Eblin: Yeah, it’s interesting that there’s so many vaccines that young children get, such as DTaP, hepatitis B, that’s a vaccine infants get at birth. But people have been really focusing on the MMR vaccines, specifically measles, mumps, rubella vaccine.

Dr. Gwynette: Yeah.

Dr. Eblin: Even though there’s all these other vaccines out there, it’s really this one people seem to be really focusing on. And what we’ve seen, as you know, in the last year, measles outbreaks are at an all time high here in the US-

Dr. Gwynette: Which is scary.

Dr. Eblin: Yeah, because of people not vaccinating their children.

Dr. Gwynette: Yeah. And for the audience, there have been outbreaks, not only in the United States, but also in Europe and Italy and in Greece. And it’s very scary because unvaccinated individuals can get mostly pneumonia is the most common comorbid condition and it can be life threatening or even fatal. It’s very scary to think about it. And there’s had been big outbreaks in New York and the New York Health Department actually mandates a vaccination for measles, mumps, and rubella now, don’t they?

Dr. Eblin: Yeah, they do.

Dr. Gwynette: Yeah.

Dr. Eblin: They do.

Dr. Gwynette: And it kind of leads me to think back to before we had successful vaccines, I obviously wasn’t around back then, but in the 20s and 30s and 40s people were contracting polio in swimming pools. And there was a lot of fear out there. The United States had our president, President Franklin Delano Roosevelt, who believe it or not, was not able to walk because of polio that he suffered as a child and he could stand at a podium and was able to mask it, but he had to be carried to and from places. And fast forward half a century, 60, 70 years later, and we’ve as a field of medicine have done such a good job of wiping out many of these illnesses that frankly killed millions of people, that there’s not the same fear anymore, is there?

Dr. Eblin: Yeah, because parents didn’t grow up with the fear of polio or the fear of a lot of these illnesses. So it’s hard for them to really comprehend the full extent of what would happen if one of their children got one of these illnesses.

Dr. Gwynette: Exactly. And the concept of herd immunity is huge because if there’s one person who’s not vaccinated, but then there’s 10,000 people who are, well, they’re going to be safe because everyone around them has been vaccinated. But once you start accumulating a few more and a few more people without the vaccination, all of a sudden you can have an epidemic breakout. It makes me think of the military because in our immunology classes in medical school, we learned that the military vaccinates the heck out of all their soldiers and so forth because they want to make sure that there’s not an outbreak. They’re in closed quarters. For instance, if you’re on a ship, you want everyone vaccinated because you can’t have an outbreak of measles for instance.

Dr. Gwynette: So that’s a great example of how herd immunity works. The flip side of that is if we stop it takes a little while but eventually you have these outbreaks. So it’s pretty scary. So there was this concern, kind of this alarm about the measles, mumps and rubella vaccine causing autism. And then since then there’s been a lot of work in medicine to try to see if it’s really a risk. And what have they found?

Dr. Eblin: They found that there’s no link within autism and vaccines.

Dr. Gwynette: Yeah. And I was reading up for this podcast, I’m talking hundreds and hundreds of papers in the medical literature showing that vaccines do not cause autism. So despite the outcry, as providers we really have to hold the line that vaccines are still one of the best ways to keep your child healthy.

Dr. Eblin: This is probably a good question for you since autism’s your specialty is a lot of parents are getting the MMR vaccine and then shortly after their kids are getting screened for autism. Do you think that might be a reason why people are getting or thinking that there is a causation between the two?

Dr. Gwynette: Definitely, definitely. So around the time kids are getting loads of vaccinations, people are either discovering that their child has autism or they’re reporting that their child has a regression of milestones. Like for instance, they may have been walking great and then at 12 months or 18 months and then by 24, 36 months, their walking has deteriorated. That may just be the natural course of autism because unfortunately about a third of cases of autism show a regressive pattern. So loss of developmental milestones. So it is unfortunate that, as these developmental milestones are being hit and then sometimes lost, that’s occurring right around the time of the vaccination. So it’s really problematic and I think it’s created a lot of clouding of the facts.

Dr. Eblin: Yeah, for sure. Do you think we need to push back the screening or maybe change when the patients are getting their MMR vaccines or the parents aren’t correlating the two thinking they got the vaccine, then they get screened for autism and the parent thinks it was the vaccine?

Dr. Gwynette: Yeah, I think it can definitely feed into that kind of fear. The pediatricians are on the front line and I think they’ve done a great job of catching autism earlier and earlier, which is important and also done a great job of educating their parents about the importance of vaccines. It’s a tough line to walk because once a parent believes that the vaccines have caused autism, I would never argue that with a parent because that’s their experience. And this, again, gets into the idea of what’s good for one child versus what’s good for a population. Those may or may not be the same thing. So parents ultimately have to make that decision for themselves. And again, you look at the military, that’s a population, you have to do things a certain way. But then when you’re talking about an individual, really the parents are the decision makers. So it is still a very tough and sensitive topic.

Dr. Eblin: Yeah, for sure. And we’ve had such an increase in autism over the last 10 to 15 years. I think one in 59 children now will be diagnosed with autism.

Dr. Gwynette: That’s right.

Dr. Eblin: What do you think has caused this increase?

Dr. Gwynette: So the standard answer is it’s a combination of genetic factors as well as environmental factors and environmental factors can mean a lot of things. But mostly they’re looking at environmental factors like medical conditions that occur in the context of autism. So I’ll give you an example. You could have a normal pregnancy that’s going along great. And certainly the genetic risk in that pregnancy is the same throughout the pregnancy because the parents don’t change. But certain events can happen during pregnancy, like an infection or blood loss or a complication during birth, high levels of bilirubin, which is a byproduct of the liver, and things like that. Unanticipated complications in birth or pregnancy can be associated with higher rates of autism. So that’s what we call like an environmental factor. There are other more external factors. Things like pesticides and air pollutions that people are investigating thoroughly and there may be some risks there, but it hasn’t really been proven and ready for prime time.

Dr. Gwynette: Now going back to the genetic factor, a couple thoughts there. One is that we all carry a set of genes and certain genes have been identified as more common in individuals with autism. So they’re looking at hundreds to thousands of genes. And certainly if you have more copies of genes that are suspected to cause autism, you’re at higher risk. I’m not a geneticists, so describing a very rudimentary understanding. But there’s also another factor. A recent article came out talking about assortative mating and this gets the idea of is autism more common in Silicon Valley? Is it more common in places where there’s lots of scientists, because patients with autism can sometimes appear to be very scientific, very interested in technology. And these days, many people who go to school, for instance, they’ll marry people they went to school with. So back in the 1800s you’re more likely to marry somebody who’s in your village or in your town. They may be two doors down, but they just geographically have similarities.

Dr. Gwynette: Nowadays we select out, which means I may come from Pennsylvania and my wife may come from Virginia, which is far away, but we met in school and we both have a career in medicine. We’re both professionals. So you start selecting out and saying, “Hey, the potential mates, they’re getting smaller and smaller.” That selection process may contribute to the uptick in autism. So there were some unpublished and published data accumulated by Dr. Simon Baron-Cohen looking at children of MIT professors, children of workers in the Silicon Valley of the Netherlands and finding higher rates of autism. So there is a little bit about who your parents are and our parents with higher genetic risk marrying each other and having kids more commonly. So I know that was a long answer to your question. It’s a complicated topic but there’s a lot there in terms of genetics and autism.

Dr. Eblin: Yeah. Well, thank you for that thorough explanation. And I think there’s also a lot of misinformation out there on autism and a lot of people think of autism, they think of something that’s nonverbal or needing special needs classes. But that’s not necessarily the case is it?

Dr. Gwynette: That’s right. So many, in fact, the majority of patients with autism do not have intellectual disability. And I think out there the stigma unfortunately is that intellectual disability and autism are one in the same. And that’s not true. It happens that the group of patients we treat at the Autism News NetWORK are what you would call high functioning or their cognitive abilities are fully intact. Their verbal skills are there. They definitely have challenges and we play to their strengths and we try to develop and strengthen their weaknesses. But yeah, I think in general the group of population of autism patients is much higher functioning than maybe we’re willing to give them credit for.

Dr. Eblin: Yeah. And what percent of patients would you say that are autistic are actually nonverbal because that’s what a lot of people assume autism is?

Dr. Gwynette: Well, the rate of intellectual disability is about 40% and those who are nonverbal is probably a subset. I actually don’t know the exact data but I would figure it’d be along the lines of five to 15% would be very limited, the vast minority.

Dr. Eblin: Gotcha. I gotcha. Well, thank you for that thorough explanation, Dr. Gwynette.

Dr. Gwynette: Sure Dr. Eblin.

Dr. Eblin: Anything else we forgot to cover?

Dr. Gwynette: Well, I just wanted to thank you for coming on today. We’re going to continue working with our group of patients. And we have been, I think, blessed to work with a group of adults with autism who are just very talented, very focused, very determined. And they’re going to continue to bring the story of autism to the masses through our content creation. And it’s always going to be told from their viewpoint. So I appreciate the audiences’ participation in listening and I really thank you for all your efforts and we’ll see you next time here on the Autism News NetWORK podcast.