Podcast — 31 Minutes

Episode 22: The Godfather Podcast

Podcast — 31 Minutes

Episode 22: The Godfather Podcast

In a new turn for the podcast, Scott “The Godfather” Biehl joins us as co-host for the first in a special series of episodes. This week, Scott and Dr. Gwynette are joined by ANN staff Jennifer, Chris, Kyle, and Erin to review some recent news stories and provide commentary and perspective on them.

You can follow Dr. Gwynette on Twitter and Instagram.

Music by @MrBobbyKalman

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Dr. Gwynette: Hello, and welcome to the Autism News NetWORK podcast. This is a new podcast in the family of the Autism News NetWORK. It is called the Godfather of Autism News podcast, and it’s going to be hosted by myself and the godfather himself, Scott Biehl. Hello, godfather?

Scott: Hello, Dr. Gwynette. How are you?

Dr. Gwynette: I’m doing great. I’m doing great. We are also joined by a few other autism News NetWORK participants. Let’s welcome Jennifer Engle. Hello, Jennifer.

Jennifer: Hello.

Dr. Gwynette: Hi. Thanks for being here. Chris is here. Hi Chris.

Chris: Hey.

Dr. Gwynette: Good to see you, and our newest member of the Autism News NetWORK, Kyle.

Kyle: Hello everyone.

Dr. Gwynette: Hey Kyle, and also Erin Hopper is here, who is one of our Autism News NewWORK staff. Hi Erin.

Erin: Hi Dr. Gwynette. Hey everybody.

Dr. Gwynette: So we’ve got an awesome group here today, and we are going to bring you something very new and special. We’re going to talk about some recent news articles in the area of autism, and then tell you what we think about them and bring you the perspective of adults with autism to the autism news. So this podcast was the idea of the godfather, Scott Biehl, and we want to give him a big shout out for that. Before we get into our content, I want to let you know you can follow us at theautismnewsnetwork.com. We’re on social media. That is Facebook, Twitter, and Instagram. You can follow me at Dr. Gwynette on Instagram and Twitter, and we hope that you will join us on all our platforms. This podcast will be available not only on Apple, Spotify, and SoundCloud, but also in video format on YouTube. So without further ado, let’s dive into this. First, everybody wants to know, Scott Biehl, Any idea why they call you the godfather?

Scott: Honestly, I don’t know where it came from. It’s just been a long time name. I have many godchildren as well.

Dr. Gwynette: Yeah.

Scott: Otherwise I have no clue where the name came from. It just has stuck.

Dr. Gwynette: Yeah. Yeah, it has, and it’s probably due to just the way that you’re such a natural leader, you have quiet strength, you take care of a lot of Autism News NetWORK participants by looking out for and watching their back, just being somebody we can always count on, and each time that you come through and save the day, I always say, “That’s why they call him the godfather.”

Scott: Yep.

Dr. Gwynette: Yeah. So you had an article that we were going to get into and it’s kind of a medical article. Do you want to give us just the gist of what it says?

Scott: Basically what it says is they’re finding more and more relation between autism and gestational diabetes in mothers. They’re finding that there is a link there. They’re not sure exactly what it is yet, but there is something there. It’s very interesting to me, because it sounds a lot more plausible than, “Oh, it’s caused by vaccines” or, “Oh, it’s caused by the diapers that I put on my child.” I have heard so many of these nonsense beliefs. This one actually sounds plausible to me, because I have had it since I was born, honestly. You’re born with it. It’s not something that putting on your child is going to … “Oh God, it’s going to cause autism.”

Dr. Gwynette: Right.

Scott: Not necessarily the case.

Dr. Gwynette: Absolutely.

Scott: And we’re not honestly sure yet that that could be the case.

Dr. Gwynette: That’s right, and this article, which was published in JAMA Psychiatry, that’s the Journal of the American Medical Association Psychiatry journal, very prestigious journal, it was a review of 61 studies in mothers with high blood pressure, including the condition called preeclampsia, which involves high blood pressure, and they found a 50% higher risk in their children for autism, so I think [inaudible 00:04:16] disorder caused by poor parenting. In fact, I always say that three times to our parents. Autism is never from poor parents. Autism is never from poor parenting, and again, autism is never from poor parenting, and I think your article here proves that this is a biological condition, doesn’t it?

Scott: Yeah. It’s biological, it’s not poor parenting. It’s not something that you’ve put on your child. It’s not something you put in your child. It’s something in genetics, and this honestly made the most sense to me, because most DNA is affected through the sugars and whatnot.

Dr. Gwynette: Yes.

Scott: If I’m not mistaken.

Dr. Gwynette: Yeah. So there’s also a link with moms who have type two diabetes in pregnancy. So that is another condition where there’s a risk. I’m interested, especially to hear from others in our discussion today, Jennifer and Chris and Kyle, have you ever had people tell you that autism is caused by X, Y, and Z and felt like that wasn’t necessarily accurate?

Kyle: I’ve felt like that.

Dr. Gwynette: Yeah.

Jennifer: I heard that … it hasn’t been told to me, but I’ve seen it on the internet. I’ve seen vaccines cause autism and all sorts of stupid crap and I’m just like, “No.”

Dr. Gwynette: Right.

Chris: Yeah. For me it’s been similar to what Jennifer’s described. It hasn’t really been told directly to me, but I’ve seen and heard just mostly rumors and things, things that aren’t necessarily true that you hear along the grapevine.

Dr. Gwynette: Yeah, exactly, and I think it’s created an environment where parents are already feeling stressed and what should I do? They don’t need guilt feelings, like, “Hey, you did this because you ate this during pregnancy or you took these types of vitamins.” So absolutely. Yeah, and the diabetes factor seems like a real risk, like in this study that the godfather mentioned.

Scott: Yeah.

Dr. Gwynette: Type II diabetes can raise the risk of autism by 45% in moms who have offspring. They end up having autism. So it’s a real thing.

Scott: Yeah.

Chris: That’s quite a large amount there.

Dr. Gwynette: Yeah, and really when we look at what we call a prenatal, which means before birth, and also perinatal, which means around the time of birth, there are all kinds of conditions that can be associated with autism, and again, what we’re pointing out here is diabetes and high blood pressure, that it not necessarily causes it, but it raises the risk. So it might be associated, but almost every pregnancy and birth complication can be associated with autism, and that includes things like infections, things like a crash C-section, if there is an umbilical cord accident, sometime it will be giving the baby less oxygen, all kinds of … if the baby has high bilirubin, if the baby’s skin is more yellow at birth, that can be associated. So we’re still in the very early stages of unpacking those medical mysteries and how they connect to autism. What do you guys think in terms of going forward, do you feel like this type of research is helpful?

Scott: I think very helpful, because I find you the earlier you get treatment, the better off you have a chance of … I don’t want to say normal, because I don’t like that term. You have a chance at a quality of life rather than, “Well, you should just be institutionalized,” which I heard that a lot as a kid.

Dr. Gwynette: They said that about you?

Scott: Yeah. I actually have heard it from probably 10 or 15 different school officials back when I was in elementary school. “He probably should be institutionalized.” “What? No,” and even my parents said, “Not happening. We’re doing something else.”

Dr. Gwynette: Right.

Scott: And so I think it’ll definitely help with bringing plan B out instead of, “Okay, let’s institutionalize.” No, you deserve the right to be a free individual and live a life rather than be stuck in a center.

Chris: I agree with that 100%.

Scott: Quick question for you, doc. I know we lost at the Shark Tank. That one that actually won the Shark Tank, they were doing something with the gestational diabetes. Do you think that would eventually help to possibly slow down the amount of autism we see?

Dr. Gwynette: Well yeah, you make a great point. We wanted to tip our hat to the winners of this year’s NUSC Shark Tank innovation week contest for clinicians, and that goes out to Connie Guille. Dr. Guille and her team came up with a system of screening expecting mothers for substance abuse, and they came up with a very innovative system of using text screenings and then expedited the evaluations and treatment for moms who were struggling to stay sober during pregnancy, but yes, absolutely. That would decrease the risk overall to any pregnancy, but it would make sense that it would also potentially decrease the risk of autism just because that pregnancy would be less complicated and you would be less likely to have low birth weight and preterm labor, some of the other factors that can overlap between risk for autism and risk associated with moms that are using substances. So no, absolutely.

Erin: If somebody would like to share a personal moment that you had from your past where somebody said to you or your parent, “It’s your fault,” or, “You should do this,” that really had an impact on you personally. Scott, you were saying that several people told your parents, at least, that they should institutionalize you. How did that affect you knowing that, and how did that affect your parents, and could we think outside the box? What if we so respected a person of authority or really didn’t know much about autism and we just went with their advice. How do you think that would affect just individuals in general? Is that something that you’ve personally had an experience with, like somebody has said, “You did this and this is why you’re like this?” Or is this something that just kind of was said to your parents who kind of communicated it to you?

Scott: It was said to my parents and I happened to be present in the room at the time. It was one of many IEP meetings, but this particular professional was removed from my life, thank God, the following year, because I did not have them again, and I was given somebody else who said, Well, no, you need to be in X, Y, and Z type therapies,” OT, speech, things of that nature, where I was able to develop some communication skills as well as general skills for life.

Dr. Gwynette: That’s awesome. So you got the help needed to flourish.

Scott: Yeah.

Dr. Gwynette: Yeah. No, that’s huge.

Erin: Definitely huge.

Dr. Gwynette: Yeah, and that’s really what it’s all about, is trying to get the help needed as early as possible.

Scott: Definitely.

Dr. Gwynette: So yeah, thanks for sharing that article, godfather, and this is hopefully going to lead to more discussions and more discoveries of articles as they come out, talking about them right here on the Godfather of Autism News podcasts. We’re going to transition now over to Jennifer who has a story that we learned about.

Jennifer: Yeah. When I was younger, like elementary, some of middle school, I was always called that weird kid. I didn’t have many friends, always kind of alone. It sucked.

Dr. Gwynette: Yeah, that’s really hard, and a lot of people have experienced that, and it’s not easy, is it?

Jennifer: No.

Scott: It really is not. Bullying sucks.

Jennifer: Has everybody in this podcast been victims of bullying in the past?

Scott: To an extreme extent, yes.

Kyle: I’ve either been bullied or I’ve been called odd and never been able to make many friends in school and other stuff. I usually stuck with people who were similar to myself.

Jennifer: I remember in middle school only having one or two friends. I don’t know,I didn’t have that many. I really don’t [inaudible 00:14:43] now.

Dr. Gwynette: And Chris, how about you?

Chris: Yeah, I’ve had a little experience that way with being bullied. Had a bit of a funny turnaround with one bully in particular through my years between elementary school and middle school, oddly enough. It was kind of funny in the end because it ended up where he bothered me in between going to the bathroom and class in elementary school. I guess he’d come down from up over the hill and just come and bother me. For what reason, I have no idea. At least from memory, it seemed that way, but one day at a bowling alley years later, I come across him. I’m going to head to the bathroom from playing some bowling and his girlfriend yells at him, just as he starts to turn around to follow me. I couldn’t help but kind of laugh once I got into the bathroom a little quietly like, “Well, there goes the end of that experience.”

Scott: That’s awesome.

Chris: Oddly enough, can’t say that’ll ever happen again for me.

Jennifer: I remember –

Chris: [crosstalk 00:16:23] like that.

Jennifer: I remember having these “friends”. They would just be friends with me for a while and then they’d just ditch me out of nowhere. I don’t know if anybody else has had that.

Chris: I’ve had that happen in middle school before.

Jennifer: Yeah, I’ve had that happen a few times.

Erin: So what are your thoughts and feelings about that? Do you have any idea why somebody would do that?

Jennifer: I don’t know, something said about me? I don’t know.

Chris: Sometimes it can be something like a rumor started from somebody who doesn’t like someone or it could be they get involved in the wrong crowd and strange things happen sometimes.

Erin: Yeah, I guess what I’m wondering is –

Chris: It’s the way school life can be.

Erin: In those moments when people are being ugly to you, it obviously hurts. Are you able to come through those or have you learned how to come through those and gotten to a point where it’s not a you problem, it’s a them problem? It’s their behavior, you’re affected, but they’re actually doing the behavior. Have you been able to do that?

Chris: I’ve learned a lot through the years. It used to always get to me. It doesn’t get to me as much as it used to, the things that bothered me years back. I mean occasionally it can still kind of get me going, just not as often.

Dr. Gwynette: Yeah. How has the bullying affected everyone’s self esteem?

Jennifer: Severely. I have zero confidence in anything, really.

Scott: It took years to rebuild self-confidence.

Jennifer: I usually blame me for everything, yeah.

Kyle: I am actually the same, Jennifer.

Jennifer: Yeah.

Erin: So what might be helpful? What would be helpful for you?

Jennifer: I don’t know.

Erin: Not sure?

Jennifer: I mean it’s slowly building back up. It’s slowly building back up.

Scott: You have to be around a lot of really good family, and –

Jennifer: Yeah, for me it’s mostly the support that’s been helping me build myself back up.

Erin: That makes sense.

Kyle: Yeah, for me in the last five years, I’ve had a support network with the adoptive family that I’m pretty much living with. I’ve been with them for five years. I hadn’t had any self worth prior to them, but the things I’ve done helping out with chores around the house and stuff has actually started building my confidence because they’ve actually appreciated it.

Erin: That’s excellent.

Dr. Gwynette: That’s great. I mean, this is exactly the type of thing that I’m so glad and proud of you guys for sharing because it’s hard and you’re not alone, and I think it’s beneficial for our audience to hear about that vulnerability and how it has an impact on self esteem, and here we are in adulthood now, and it’s still something that hurts, but part of the Autism News NetWORK’s success, I believe, is that we are supporting one another and interacting and learning together how we can share our story. Yeah, it’s really good. I was going to pivot now to another really cool article from Newark, New Jersey, and Jennifer, did you mind sharing that with our audience?

Jennifer: Let me pull it back up. Do you want me to just read it or just –

Dr. Gwynette: You can just summarize it.

Jennifer: Okay. Well let me pull it back up then. So police found this little boy just walking around. Apparently he just walked off from his home and police decided, “Hey, let’s just drop him back at his house,” and the boy had autism. I don’t know how to –

Dr. Gwynette: No, it’s really cool, because I guess there was a rainstorm and this kid left his house and his parents [crosstalk 00:20:59] understandably, and then the police were able to find him and they took him back home and his parents basically were beside themselves with relief, grateful.

Scott: Any parent would be.

Dr. Gwynette: Yeah.

Jennifer: Yeah.

Dr. Gwynette: And we call that wandering or even elopement, that’s a thing in autism where children would wander off out of the home. Even though the parents are trying to keep an eye on them, you just can’t monitor someone 24/7.

Scott: There’s no amount of locks that can stop it.

Dr. Gwynette: And it can be dangerous with things like traffic and also people falling into lakes and drowning. So we rely on the police to help locate missing persons, and this was a very happy outcome. Thanks Jennifer. Go ahead, Chris, you’re going to say something?

Chris: I said it was good that they were able to get him back home.

Dr. Gwynette: Yeah. Yeah, absolutely, and then we’re going to go to another article now. Kyle, you have, I think, some really cool stuff to share with the audience.

Kyle: Yeah. I looked up … with your help doctor, when I looked up an article for friends, I guess you could call them, that live in … if the laptop would work with me here. There we are. All right … for friends who live near a place called Renfrewshire. They teamed up for an online festival to get people all over their county to dance in their living rooms to raise cash for autism.

Dr. Gwynette: Cool.

Jennifer: Oh, nice.

Scott: Okay. So [crosstalk 00:22:51]?

Kyle: They started a Facebook live event doing this, which thousands of people all over the area saw and helped to raise money for a … I guess it’s a nonprofit. I’m not sure. It’s called Always Included.

Chris: Oh, yes.

Dr. Gwynette: Yeah, isn’t that cool? So they got four DJs in the UK that said, “You know what? We can’t have a concert. So we’re going to have people rave at home and raise money for autism.” What was the amount, Kyle?

Kyle: It was 2000 British pounds, which equivalent comes out to about 2,509 US dollars.

Jennifer: Dang, nice.

Kyle: It went to the center that they are helping to build.

Dr. Gwynette: Impressive. That’s so cool.

Kyle: A center for autism in their local community.

Dr. Gwynette: Yeah, that is great. And people just raving in homes, chair raving.

Scott: That is awesome.

Dr. Gwynette: That really is. So even in spite of the pandemic and in spite of the challenges autism face, these four friends still found a way to overcome and to show their support. That’s amazing. Cool. Well, Kyle, thanks for sharing that, and Erin, you have a story that’s more in the medical realm that we wanted to share.

Erin: Sure. It’s called new system shown to improve early diagnosis of autism, and so in essence the Indiana University School of Medicine was trying to get early diagnoses of patients because we know that early diagnoses has better outcomes, and so they were able to take … their typical process took nine to 12 months for somebody to get in for a diagnosis, and they were able to decrease it to just 62 days. That’s a huge decrease, and so what that allows people to do is to get into therapy sooner, and Scott, you were talking earlier about how the first person you went to said institutionalize, but then the next person you went to said, “No, let’s do some therapies,” and from what I understand, therapies were helpful, correct?

Scott: Very.

Erin: So there’s a big difference when you go from nine to 12 months on a waiting list down to two months or less, so that you can do lots of therapy. I was wondering if anybody else had some good therapy experiences that you thought were helpful?

Kyle: One of the things I’ve found helped is having groups like this.

Scott: Yeah.

Kyle: The social interaction with other people who have autism.

Chris: Yeah, these are always help.

Erin: That’s amazing.

Scott: It’s actually a very good emotional uplift.

Erin: Can anybody remember back to their preschool years? Any therapies that you felt were helpful or not so helpful?

Scott: Well, the OT teacher trying to teach me to catch a ball, that was kind of useless, but for the most part, a lot of the other therapies … I had a lot of trouble actually handling money, picking it up off a tabletop. We worked with that. Penmanship, it’s still atrocious, but if we had left it the way it was, you’d still be reading hieroglyphics out of me, because my handwriting sucks.

Kyle: If I don’t take my time, my handwriting is like a doctor’s chicken scratch.

Erin: Just pretend to be a doctor.

Dr. Gwynette: But those therapies for the fine motor skills, it sounds like were beneficial.

Scott: Yeah.

Chris: I didn’t have any kind of diagnosis until late in life.

Scott: How late in life was that, Chris?

Chris: It wasn’t until my stepmom got involved in my life that she had noticed something different.

Scott: About what age?

Chris: I think early teens, I think.

Scott: Wow.

Chris: Somewhere near my teens.

Kyle: Mine was all over the board. I was first diagnosed with a whole bunch of different diagnoses, ADHD and all sorts of things, and over the years they just kept adding more and more diagnoses, and finally, I ended up with my school, went to a professional who did a really broad 300 random question test and ended up diagnosed with … at the time, I don’t know what it’s called nowadays, but at the time I was diagnosed with Asperger’s when I was 15, 16 years old.

Chris: It’s still the same thing, as far as I know.

Dr. Gwynette: Yeah, and for the audience, Asperger’s is conceptually somebody who has high abilities and still is on the spectrum, and technically the diagnosis of autism spectrum disorder has kind of trumped that Asperger’s diagnosis now, because we want everyone to have equal treatment and equal access to services. So yeah, Asperger’s is a little bit of an older term, but it still conveys meaning to many people.

Kyle: And to a lot of people, that term comes with a negative meaning, due to a violence aspect on that side.

Scott: Yeah.

Kyle: They’ve gone. Away from that term.

Dr. Gwynette: Yeah, and I think breaking some of those stereotypes is what we’re all about here at the Autism News NetWORK. So I wanted to be conscious of our time and remind you that this has been the Godfather of Autism News podcast. We brought you several articles today from the world of medicine, from the UK and also from as far away as Newark, New Jersey, and we’ve been joined today by Jennifer, Kyle, godfather, and Chris, and also Erin. Well this has been the Godfather of Autism News podcast. You can follow me at Dr. Gwynette on Instagram and Twitter, and please check us out at theautismnewsnetwork.com. All kinds of cool content that we’re putting out. We have a podcast coming up with Dr. Andrea Boyer, who is an adolescent psychiatrist, and next week we are recording with Carrie Megro, who is an internationally known adult with autism. All content on the Autism News NetWORK is written, produced, and directed by adults with autism, and if you’ve got a concept of what people with autism can do, we’re going to show you a whole new world of what’s possible. The four that joined me today, they’re making a podcast today, and how about that?

Scott: Yes.

Dr. Gwynette: Jennifer, Kyle, godfather, Chris, and Erin, this has been a lot of fun and we hope to do this again and hopefully in a couple of weeks.

Scott: Great. Thank you guys.

Dr. Gwynette: Cool, and until then, bye everyone. Have a great day.

Jennifer: Bye.

Dr. Gwynette: Hello, and welcome to the Autism News NetWORK podcast. This is a new podcast in the family of the Autism News NetWORK. It is called the Godfather of Autism News podcast, and it’s going to be hosted by myself and the godfather himself, Scott Biehl. Hello, godfather?

Scott: Hello, Dr. Gwynette. How are you?

Dr. Gwynette: I’m doing great. I’m doing great. We are also joined by a few other autism News NetWORK participants. Let’s welcome Jennifer Engle. Hello, Jennifer.

Jennifer: Hello.

Dr. Gwynette: Hi. Thanks for being here. Chris is here. Hi Chris.

Chris: Hey.

Dr. Gwynette: Good to see you, and our newest member of the Autism News NetWORK, Kyle.

Kyle: Hello everyone.

Dr. Gwynette: Hey Kyle, and also Erin Hopper is here, who is one of our Autism News NewWORK staff. Hi Erin.

Erin: Hi Dr. Gwynette. Hey everybody.

Dr. Gwynette: So we’ve got an awesome group here today, and we are going to bring you something very new and special. We’re going to talk about some recent news articles in the area of autism, and then tell you what we think about them and bring you the perspective of adults with autism to the autism news. So this podcast was the idea of the godfather, Scott Biehl, and we want to give him a big shout out for that. Before we get into our content, I want to let you know you can follow us at theautismnewsnetwork.com. We’re on social media. That is Facebook, Twitter, and Instagram. You can follow me at Dr. Gwynette on Instagram and Twitter, and we hope that you will join us on all our platforms. This podcast will be available not only on Apple, Spotify, and SoundCloud, but also in video format on YouTube. So without further ado, let’s dive into this. First, everybody wants to know, Scott Biehl, Any idea why they call you the godfather?

Scott: Honestly, I don’t know where it came from. It’s just been a long time name. I have many godchildren as well.

Dr. Gwynette: Yeah.

Scott: Otherwise I have no clue where the name came from. It just has stuck.

Dr. Gwynette: Yeah. Yeah, it has, and it’s probably due to just the way that you’re such a natural leader, you have quiet strength, you take care of a lot of Autism News NetWORK participants by looking out for and watching their back, just being somebody we can always count on, and each time that you come through and save the day, I always say, “That’s why they call him the godfather.”

Scott: Yep.

Dr. Gwynette: Yeah. So you had an article that we were going to get into and it’s kind of a medical article. Do you want to give us just the gist of what it says?

Scott: Basically what it says is they’re finding more and more relation between autism and gestational diabetes in mothers. They’re finding that there is a link there. They’re not sure exactly what it is yet, but there is something there. It’s very interesting to me, because it sounds a lot more plausible than, “Oh, it’s caused by vaccines” or, “Oh, it’s caused by the diapers that I put on my child.” I have heard so many of these nonsense beliefs. This one actually sounds plausible to me, because I have had it since I was born, honestly. You’re born with it. It’s not something that putting on your child is going to … “Oh God, it’s going to cause autism.”

Dr. Gwynette: Right.

Scott: Not necessarily the case.

Dr. Gwynette: Absolutely.

Scott: And we’re not honestly sure yet that that could be the case.

Dr. Gwynette: That’s right, and this article, which was published in JAMA Psychiatry, that’s the Journal of the American Medical Association Psychiatry journal, very prestigious journal, it was a review of 61 studies in mothers with high blood pressure, including the condition called preeclampsia, which involves high blood pressure, and they found a 50% higher risk in their children for autism, so I think [inaudible 00:04:16] disorder caused by poor parenting. In fact, I always say that three times to our parents. Autism is never from poor parents. Autism is never from poor parenting, and again, autism is never from poor parenting, and I think your article here proves that this is a biological condition, doesn’t it?

Scott: Yeah. It’s biological, it’s not poor parenting. It’s not something that you’ve put on your child. It’s not something you put in your child. It’s something in genetics, and this honestly made the most sense to me, because most DNA is affected through the sugars and whatnot.

Dr. Gwynette: Yes.

Scott: If I’m not mistaken.

Dr. Gwynette: Yeah. So there’s also a link with moms who have type two diabetes in pregnancy. So that is another condition where there’s a risk. I’m interested, especially to hear from others in our discussion today, Jennifer and Chris and Kyle, have you ever had people tell you that autism is caused by X, Y, and Z and felt like that wasn’t necessarily accurate?

Kyle: I’ve felt like that.

Dr. Gwynette: Yeah.

Jennifer: I heard that … it hasn’t been told to me, but I’ve seen it on the internet. I’ve seen vaccines cause autism and all sorts of stupid crap and I’m just like, “No.”

Dr. Gwynette: Right.

Chris: Yeah. For me it’s been similar to what Jennifer’s described. It hasn’t really been told directly to me, but I’ve seen and heard just mostly rumors and things, things that aren’t necessarily true that you hear along the grapevine.

Dr. Gwynette: Yeah, exactly, and I think it’s created an environment where parents are already feeling stressed and what should I do? They don’t need guilt feelings, like, “Hey, you did this because you ate this during pregnancy or you took these types of vitamins.” So absolutely. Yeah, and the diabetes factor seems like a real risk, like in this study that the godfather mentioned.

Scott: Yeah.

Dr. Gwynette: Type II diabetes can raise the risk of autism by 45% in moms who have offspring. They end up having autism. So it’s a real thing.

Scott: Yeah.

Chris: That’s quite a large amount there.

Dr. Gwynette: Yeah, and really when we look at what we call a prenatal, which means before birth, and also perinatal, which means around the time of birth, there are all kinds of conditions that can be associated with autism, and again, what we’re pointing out here is diabetes and high blood pressure, that it not necessarily causes it, but it raises the risk. So it might be associated, but almost every pregnancy and birth complication can be associated with autism, and that includes things like infections, things like a crash C-section, if there is an umbilical cord accident, sometime it will be giving the baby less oxygen, all kinds of … if the baby has high bilirubin, if the baby’s skin is more yellow at birth, that can be associated. So we’re still in the very early stages of unpacking those medical mysteries and how they connect to autism. What do you guys think in terms of going forward, do you feel like this type of research is helpful?

Scott: I think very helpful, because I find you the earlier you get treatment, the better off you have a chance of … I don’t want to say normal, because I don’t like that term. You have a chance at a quality of life rather than, “Well, you should just be institutionalized,” which I heard that a lot as a kid.

Dr. Gwynette: They said that about you?

Scott: Yeah. I actually have heard it from probably 10 or 15 different school officials back when I was in elementary school. “He probably should be institutionalized.” “What? No,” and even my parents said, “Not happening. We’re doing something else.”

Dr. Gwynette: Right.

Scott: And so I think it’ll definitely help with bringing plan B out instead of, “Okay, let’s institutionalize.” No, you deserve the right to be a free individual and live a life rather than be stuck in a center.

Chris: I agree with that 100%.

Scott: Quick question for you, doc. I know we lost at the Shark Tank. That one that actually won the Shark Tank, they were doing something with the gestational diabetes. Do you think that would eventually help to possibly slow down the amount of autism we see?

Dr. Gwynette: Well yeah, you make a great point. We wanted to tip our hat to the winners of this year’s NUSC Shark Tank innovation week contest for clinicians, and that goes out to Connie Guille. Dr. Guille and her team came up with a system of screening expecting mothers for substance abuse, and they came up with a very innovative system of using text screenings and then expedited the evaluations and treatment for moms who were struggling to stay sober during pregnancy, but yes, absolutely. That would decrease the risk overall to any pregnancy, but it would make sense that it would also potentially decrease the risk of autism just because that pregnancy would be less complicated and you would be less likely to have low birth weight and preterm labor, some of the other factors that can overlap between risk for autism and risk associated with moms that are using substances. So no, absolutely.

Erin: If somebody would like to share a personal moment that you had from your past where somebody said to you or your parent, “It’s your fault,” or, “You should do this,” that really had an impact on you personally. Scott, you were saying that several people told your parents, at least, that they should institutionalize you. How did that affect you knowing that, and how did that affect your parents, and could we think outside the box? What if we so respected a person of authority or really didn’t know much about autism and we just went with their advice. How do you think that would affect just individuals in general? Is that something that you’ve personally had an experience with, like somebody has said, “You did this and this is why you’re like this?” Or is this something that just kind of was said to your parents who kind of communicated it to you?

Scott: It was said to my parents and I happened to be present in the room at the time. It was one of many IEP meetings, but this particular professional was removed from my life, thank God, the following year, because I did not have them again, and I was given somebody else who said, Well, no, you need to be in X, Y, and Z type therapies,” OT, speech, things of that nature, where I was able to develop some communication skills as well as general skills for life.

Dr. Gwynette: That’s awesome. So you got the help needed to flourish.

Scott: Yeah.

Dr. Gwynette: Yeah. No, that’s huge.

Erin: Definitely huge.

Dr. Gwynette: Yeah, and that’s really what it’s all about, is trying to get the help needed as early as possible.

Scott: Definitely.

Dr. Gwynette: So yeah, thanks for sharing that article, godfather, and this is hopefully going to lead to more discussions and more discoveries of articles as they come out, talking about them right here on the Godfather of Autism News podcasts. We’re going to transition now over to Jennifer who has a story that we learned about.

Jennifer: Yeah. When I was younger, like elementary, some of middle school, I was always called that weird kid. I didn’t have many friends, always kind of alone. It sucked.

Dr. Gwynette: Yeah, that’s really hard, and a lot of people have experienced that, and it’s not easy, is it?

Jennifer: No.

Scott: It really is not. Bullying sucks.

Jennifer: Has everybody in this podcast been victims of bullying in the past?

Scott: To an extreme extent, yes.

Kyle: I’ve either been bullied or I’ve been called odd and never been able to make many friends in school and other stuff. I usually stuck with people who were similar to myself.

Jennifer: I remember in middle school only having one or two friends. I don’t know,I didn’t have that many. I really don’t [inaudible 00:14:43] now.

Dr. Gwynette: And Chris, how about you?

Chris: Yeah, I’ve had a little experience that way with being bullied. Had a bit of a funny turnaround with one bully in particular through my years between elementary school and middle school, oddly enough. It was kind of funny in the end because it ended up where he bothered me in between going to the bathroom and class in elementary school. I guess he’d come down from up over the hill and just come and bother me. For what reason, I have no idea. At least from memory, it seemed that way, but one day at a bowling alley years later, I come across him. I’m going to head to the bathroom from playing some bowling and his girlfriend yells at him, just as he starts to turn around to follow me. I couldn’t help but kind of laugh once I got into the bathroom a little quietly like, “Well, there goes the end of that experience.”

Scott: That’s awesome.

Chris: Oddly enough, can’t say that’ll ever happen again for me.

Jennifer: I remember –

Chris: [crosstalk 00:16:23] like that.

Jennifer: I remember having these “friends”. They would just be friends with me for a while and then they’d just ditch me out of nowhere. I don’t know if anybody else has had that.

Chris: I’ve had that happen in middle school before.

Jennifer: Yeah, I’ve had that happen a few times.

Erin: So what are your thoughts and feelings about that? Do you have any idea why somebody would do that?

Jennifer: I don’t know, something said about me? I don’t know.

Chris: Sometimes it can be something like a rumor started from somebody who doesn’t like someone or it could be they get involved in the wrong crowd and strange things happen sometimes.

Erin: Yeah, I guess what I’m wondering is –

Chris: It’s the way school life can be.

Erin: In those moments when people are being ugly to you, it obviously hurts. Are you able to come through those or have you learned how to come through those and gotten to a point where it’s not a you problem, it’s a them problem? It’s their behavior, you’re affected, but they’re actually doing the behavior. Have you been able to do that?

Chris: I’ve learned a lot through the years. It used to always get to me. It doesn’t get to me as much as it used to, the things that bothered me years back. I mean occasionally it can still kind of get me going, just not as often.

Dr. Gwynette: Yeah. How has the bullying affected everyone’s self esteem?

Jennifer: Severely. I have zero confidence in anything, really.

Scott: It took years to rebuild self-confidence.

Jennifer: I usually blame me for everything, yeah.

Kyle: I am actually the same, Jennifer.

Jennifer: Yeah.

Erin: So what might be helpful? What would be helpful for you?

Jennifer: I don’t know.

Erin: Not sure?

Jennifer: I mean it’s slowly building back up. It’s slowly building back up.

Scott: You have to be around a lot of really good family, and –

Jennifer: Yeah, for me it’s mostly the support that’s been helping me build myself back up.

Erin: That makes sense.

Kyle: Yeah, for me in the last five years, I’ve had a support network with the adoptive family that I’m pretty much living with. I’ve been with them for five years. I hadn’t had any self worth prior to them, but the things I’ve done helping out with chores around the house and stuff has actually started building my confidence because they’ve actually appreciated it.

Erin: That’s excellent.

Dr. Gwynette: That’s great. I mean, this is exactly the type of thing that I’m so glad and proud of you guys for sharing because it’s hard and you’re not alone, and I think it’s beneficial for our audience to hear about that vulnerability and how it has an impact on self esteem, and here we are in adulthood now, and it’s still something that hurts, but part of the Autism News NetWORK’s success, I believe, is that we are supporting one another and interacting and learning together how we can share our story. Yeah, it’s really good. I was going to pivot now to another really cool article from Newark, New Jersey, and Jennifer, did you mind sharing that with our audience?

Jennifer: Let me pull it back up. Do you want me to just read it or just –

Dr. Gwynette: You can just summarize it.

Jennifer: Okay. Well let me pull it back up then. So police found this little boy just walking around. Apparently he just walked off from his home and police decided, “Hey, let’s just drop him back at his house,” and the boy had autism. I don’t know how to –

Dr. Gwynette: No, it’s really cool, because I guess there was a rainstorm and this kid left his house and his parents [crosstalk 00:20:59] understandably, and then the police were able to find him and they took him back home and his parents basically were beside themselves with relief, grateful.

Scott: Any parent would be.

Dr. Gwynette: Yeah.

Jennifer: Yeah.

Dr. Gwynette: And we call that wandering or even elopement, that’s a thing in autism where children would wander off out of the home. Even though the parents are trying to keep an eye on them, you just can’t monitor someone 24/7.

Scott: There’s no amount of locks that can stop it.

Dr. Gwynette: And it can be dangerous with things like traffic and also people falling into lakes and drowning. So we rely on the police to help locate missing persons, and this was a very happy outcome. Thanks Jennifer. Go ahead, Chris, you’re going to say something?

Chris: I said it was good that they were able to get him back home.

Dr. Gwynette: Yeah. Yeah, absolutely, and then we’re going to go to another article now. Kyle, you have, I think, some really cool stuff to share with the audience.

Kyle: Yeah. I looked up … with your help doctor, when I looked up an article for friends, I guess you could call them, that live in … if the laptop would work with me here. There we are. All right … for friends who live near a place called Renfrewshire. They teamed up for an online festival to get people all over their county to dance in their living rooms to raise cash for autism.

Dr. Gwynette: Cool.

Jennifer: Oh, nice.

Scott: Okay. So [crosstalk 00:22:51]?

Kyle: They started a Facebook live event doing this, which thousands of people all over the area saw and helped to raise money for a … I guess it’s a nonprofit. I’m not sure. It’s called Always Included.

Chris: Oh, yes.

Dr. Gwynette: Yeah, isn’t that cool? So they got four DJs in the UK that said, “You know what? We can’t have a concert. So we’re going to have people rave at home and raise money for autism.” What was the amount, Kyle?

Kyle: It was 2000 British pounds, which equivalent comes out to about 2,509 US dollars.

Jennifer: Dang, nice.

Kyle: It went to the center that they are helping to build.

Dr. Gwynette: Impressive. That’s so cool.

Kyle: A center for autism in their local community.

Dr. Gwynette: Yeah, that is great. And people just raving in homes, chair raving.

Scott: That is awesome.

Dr. Gwynette: That really is. So even in spite of the pandemic and in spite of the challenges autism face, these four friends still found a way to overcome and to show their support. That’s amazing. Cool. Well, Kyle, thanks for sharing that, and Erin, you have a story that’s more in the medical realm that we wanted to share.

Erin: Sure. It’s called new system shown to improve early diagnosis of autism, and so in essence the Indiana University School of Medicine was trying to get early diagnoses of patients because we know that early diagnoses has better outcomes, and so they were able to take … their typical process took nine to 12 months for somebody to get in for a diagnosis, and they were able to decrease it to just 62 days. That’s a huge decrease, and so what that allows people to do is to get into therapy sooner, and Scott, you were talking earlier about how the first person you went to said institutionalize, but then the next person you went to said, “No, let’s do some therapies,” and from what I understand, therapies were helpful, correct?

Scott: Very.

Erin: So there’s a big difference when you go from nine to 12 months on a waiting list down to two months or less, so that you can do lots of therapy. I was wondering if anybody else had some good therapy experiences that you thought were helpful?

Kyle: One of the things I’ve found helped is having groups like this.

Scott: Yeah.

Kyle: The social interaction with other people who have autism.

Chris: Yeah, these are always help.

Erin: That’s amazing.

Scott: It’s actually a very good emotional uplift.

Erin: Can anybody remember back to their preschool years? Any therapies that you felt were helpful or not so helpful?

Scott: Well, the OT teacher trying to teach me to catch a ball, that was kind of useless, but for the most part, a lot of the other therapies … I had a lot of trouble actually handling money, picking it up off a tabletop. We worked with that. Penmanship, it’s still atrocious, but if we had left it the way it was, you’d still be reading hieroglyphics out of me, because my handwriting sucks.

Kyle: If I don’t take my time, my handwriting is like a doctor’s chicken scratch.

Erin: Just pretend to be a doctor.

Dr. Gwynette: But those therapies for the fine motor skills, it sounds like were beneficial.

Scott: Yeah.

Chris: I didn’t have any kind of diagnosis until late in life.

Scott: How late in life was that, Chris?

Chris: It wasn’t until my stepmom got involved in my life that she had noticed something different.

Scott: About what age?

Chris: I think early teens, I think.

Scott: Wow.

Chris: Somewhere near my teens.

Kyle: Mine was all over the board. I was first diagnosed with a whole bunch of different diagnoses, ADHD and all sorts of things, and over the years they just kept adding more and more diagnoses, and finally, I ended up with my school, went to a professional who did a really broad 300 random question test and ended up diagnosed with … at the time, I don’t know what it’s called nowadays, but at the time I was diagnosed with Asperger’s when I was 15, 16 years old.

Chris: It’s still the same thing, as far as I know.

Dr. Gwynette: Yeah, and for the audience, Asperger’s is conceptually somebody who has high abilities and still is on the spectrum, and technically the diagnosis of autism spectrum disorder has kind of trumped that Asperger’s diagnosis now, because we want everyone to have equal treatment and equal access to services. So yeah, Asperger’s is a little bit of an older term, but it still conveys meaning to many people.

Kyle: And to a lot of people, that term comes with a negative meaning, due to a violence aspect on that side.

Scott: Yeah.

Kyle: They’ve gone. Away from that term.

Dr. Gwynette: Yeah, and I think breaking some of those stereotypes is what we’re all about here at the Autism News NetWORK. So I wanted to be conscious of our time and remind you that this has been the Godfather of Autism News podcast. We brought you several articles today from the world of medicine, from the UK and also from as far away as Newark, New Jersey, and we’ve been joined today by Jennifer, Kyle, godfather, and Chris, and also Erin. Well this has been the Godfather of Autism News podcast. You can follow me at Dr. Gwynette on Instagram and Twitter, and please check us out at theautismnewsnetwork.com. All kinds of cool content that we’re putting out. We have a podcast coming up with Dr. Andrea Boyer, who is an adolescent psychiatrist, and next week we are recording with Carrie Megro, who is an internationally known adult with autism. All content on the Autism News NetWORK is written, produced, and directed by adults with autism, and if you’ve got a concept of what people with autism can do, we’re going to show you a whole new world of what’s possible. The four that joined me today, they’re making a podcast today, and how about that?

Scott: Yes.

Dr. Gwynette: Jennifer, Kyle, godfather, Chris, and Erin, this has been a lot of fun and we hope to do this again and hopefully in a couple of weeks.

Scott: Great. Thank you guys.

Dr. Gwynette: Cool, and until then, bye everyone. Have a great day.

Jennifer: Bye.

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