Donation for Autism Research

Hello, and welcome to the Gifted Life Podcast, where we have conversations about organ tissue and eye donation and transplantation. You can always find us at thegiftedlife.org. I'm Roy Sneel. I'm Joey Boudreau.

I'm Sarah Blakemore. On this episode... Donation. How it's impacting new frontiers in autism research.

And we're going to talk about how maybe your purpose in life is just to live. Ooh. Can't wait to get started. Here on the Gifted Life Podcast, we are excited to talk to you about this topic that we haven't talked about a whole lot here on the Gifted Life, but Carolyn Hare joins us now.

Hey, ma'am. Hi, how are you? We so appreciate you being here today. Carolyn is the clinical director for Autism BrainNet.

So we are so excited to talk about this, to learn from you. That's what this podcast is all about, learning from our partners, and you are a great one. We kind of want to start with just an overview of autism if you could start there. Oh, sure.

And also, thank you for having me today. I really appreciate the opportunity to speak with you and your audience. So thinking about autism in general, I think one of the things that people first ask is how is autism diagnosed? And is there sort of a blood test that can happen?

Is there any sort of formal evaluation that can be done early on to diagnose autism? And the answer is that autism is a behavioral diagnosis, and it is primarily characterized by an impairment in communication, an impairment in social interaction, and stereotype to and repetitive behaviors and interests. Now, most pediatricians have the capacity to do early-screen to help families see when autism might be something that they want to consider as a diagnosis for a child. It used to be that autism was rarely identified, but some positive news is that with the CDC's reporting of the 2020 incidence rates, they also let us know that 84% of pediatrician's offices are offering this sort of screening.

So if you have concerns, it's important to speak to your pediatrician. So what are those signs that they should be looking for when they're concerned or maybe thinking that autism could be something that we'll be working through? Yeah, that's a good question. I think the red flags that most families or the differences in their child's behavior or development that stand out the most have to do with a child's communication, first of all.

If a child's language development is delayed significantly, meaning that they're not using single words meaningfully before 18 months of age, that would be one red flag. Another one is their child's level of social engagement. If you're having difficulty making eye contact with your child or they're not responding when you're calling their name, first you want to get their hearing checked. But then secondly, that could be another significant sign that you would want to pay attention to.

So at what age now that I've got a five month old and these things all obviously resonate quite a bit with me, what age does that usually take place? That is such a good question. You know, it used to be thought that two years of age was really the ideal sort of point at which a child would have typically developed the behaviors that would allow us to know if they're developing normally or if they may have some complications in their development. At this point though, we're getting so much better at early identification that sometimes 18 months or 12 months of age is when you want to start having that conversation.

So of course, one of my roles with LOPA as a chief clinical officer, I oversee the research department program and we've got a wonderful research program manager in Tina Madair. And kind of the way it goes is Tina has been tasked with LOPA to constantly seek out research opportunities that would be fruitful, that have a great impact that we can possibly positively impact and she brings that to the other clinical leaders and we talk about it and decide, okay, this is something that we should try to go forth with. And so with that, I bring in Tina Madair. Woo!

Hi! Tina! She is wonderful. She is.

She's amazing by the way. So Tina, when she first brought it to our attention, I can tell you, my first thought was immediately yes, this is a resounding yes. So Tina, I'll start off with you. So what brought your attention, what got your interest, picture interest in saying that this is something that we should be pursuing?

Well, I first heard about this program through our CEO, Kelly. She had went to a conference somewhere and brought me back a pamphlet and she was very excited about it. We had started getting into brain recoveries about five years ago and we do some great programs with things for PTSD and addiction and things like that. And so this was, I seen this as another really great program.

So and you mentioned PTSD, we also work with the NFL with CTE. So it kind of all ties in. Yes. And so what we've been trying to do from a movement going forward.

So five years ago, we started with one brain bank that covered, they work with a lot of researchers and cover a lot of different, you know, neuro type disorders. And then we've since branched out and I want to say it might be up to six or seven brain banks now. So we can place, you know, any kind of disorders now. Yeah, you talk about the PTSD and also the CTE and it, you know, and I don't know if that's something you're familiar with, Carolyn, do you guys do anything?

Are you familiar with CTE? So I am and you know, just a little bit of a personal side note, Bennett Amalu, who is really the pioneer of research into chronic traumatic encephalopathy, is from Pittsburgh, with Italy. So he and I worked together directly for a period of time. Yeah.

I love this. I love when Tina joins our meetings and she comes in with these updates and we're like, oh, this is so fascinating. We have to tell people. And so this is one avenue that we're able to do that here on the gift of life.

So we mentioned Carolyn that you're with autism brain net. So what is it and what is its mission? Right. So the program that we're working at is a collaborative network of biorepositories around the country.

We have three sites currently where we collect post-mortem brain tissue for autism and research into autism and related neurodevelopmental disorders. Those repositories are located at the UC Davis Mind Institute in Sacramento, at UT Southwestern in Dallas and Harvard's Beth Israel Deaconess Medical Center in Boston. Right. So how does the program work in and how does LOBA, I guess, come into play?

So that's such a good question. So the program works in that, you know, our mission, of course, in developing this collaborative network is to support or facilitate the highest quality of research into autism and related neurodevelopmental disorders by providing researchers with post-mortem brain tissue to study. Now a lot of people ask, why is it so important to study post-mortem brain tissue? You know, we have MRIs.

We have other ways of looking at the brain while people are alive and with us. And those are absolutely important tools. However, if we really, really want to understand what's different about the brains of people with autism and other neurodevelopmental disorders, we have to look at the actual structure of the brain. And that's why this is so important.

So in incomes, LOBA, you know, so, so when Tina then reaches out to you. So how do you guys work with the organ recovery agencies? So, you know, I guess I want to start by saying that our partnership with LOBA, you know, like our partnerships with our donor families is really at the heart of what we do. You know, you all are so passionate about supporting research and about making sure that we're connected to families who are making this very important decision.

So our partnership with LOBA really serves that purpose in introducing families to this idea of brain donation and more specifically brain donation for autism research. So, in Tina brought all the family advocates this new research opportunity for our families. We were very excited. So how it works is a family advocate, whether it's an organ family advocate or a tissue family advocate approaches for donation.

And part of that is some of our donors have opportunities for research. And that will be part of the process when you're doing paperwork for authorization is the family advocates will ask if you and your family are comfortable and want to be part of certain research processes. So this is one of those that we are now asking our families about. And when we started, you know, I knew that family advocates, one of their big questions would be that because they would be asked so often is what does a viewing look like?

And of course that was the first question. I think that I posted to Tina, you know, when we, you know, sparked the interest of, okay, do we proceed or not? So Tina, can you tell us a little bit about that? As far as an incision goes, there will be an incision going across the top of the head, I say from ear to ear.

If that donor has hair, it's hidden. You won't ever see it. If they don't have hair, older gentlemen or something mostly bald, you are going to see some type of an incision. But really with funeral arrangements and how they're laid with a pillow, the pillows are pretty fluffy and will cover most of it.

We do tell our families up front though and we've had families come back with, oh, he's going to be wearing a hat anyway. So they usually, it hasn't been an issue. Most people who want this type of donation, they really want it to happen. So they, you know, we'll obviously know.

And I know that, Sarah, you mentioned when we were asking for organ tissue donation, is there ever, is it possible to just recover brain or does it have to be part of organ and tissue recovery? And then many brain only recoveries. So how do we find those families? Do they reach out to autism brain or LOPA?

You know, sometimes yes. Since I work with so many brain banks, a lot of, depending on what issue these people might have, they signed themselves up for a program. It could be Parkinson's or PTSD. And so these brain banks already know and they'll contact me and say, hey, Tina, we have a recovery in your area, you know, and they'll give me the information to go take care of that way.

Now, in other ways, I refer roles that we get every day from hospitals. I take a look at all of those. It's usually in a past medical history. Autism will pop right up.

Yes. They'll just look at the foods in just reminding a family advocate to a reading, you know, that this is an opportunity for the family. And then with our tissue family advocates, they have a list of a lot of neuro stuff that they look for when they're going through their referrals. And they'll call me or they'll, you know, go ahead and ask the family.

And so what is the goal of autism brainnet? So we talked about these amazing families who say yes. And we know in the donation world what that means. What does it mean for autism brainnet?

Right. So, you know, autism brainnets goal in facilitating this research is to enable scientists to better understand the causes of autism and related developmental disorders so that we can develop better, more targeted treatments and interventions that folks can choose to take advantage of if they want to. So anxiety is a really good example of something that's been well studied in autism as a result of postmortem tissue donation. In fact, one of our directors, Dr.

Cindy Schumann at the UC Davis Mind Institute, has done a significant amount of research into the area of the brain called the amygdala and anxiety. And what they've learned is that very, very early on in life, children develop children with autism have a much more dense population of neurons in the amygdala as children and have heightened or overreactions based on the environmental stimuli so they have increased anxiety as children. But what's interesting is that while that population of neurons are the neurons are much denser at the younger age, as people age, we've learned that there are fewer neurons in adults with autism than typical adults. And so what does that mean?

So one thing that this means is that, you know, that we can continue to learn and change in our brains of all of course over time, and it means that early intervention is very, very important. If I could also add, I just learned in researching for this podcast that something that I was really encouraged by and I think that a lot of people are, you know, we were talking about before, like the increase in screening by pediatricians and I think awareness in terms of autism spectrum disorders has improved dramatically over time. But one of the statistics that sort of blew me away is that finally we have, so the increase or the incidence rate is one out of every 54 children is diagnosed with an autism spectrum disorder today. I remember that being one out of 100, it feels like just yesterday.

Yeah, and so even from, let me think, even from, gosh, 2014 to 2020, there was a 10% increase in the incidence to one in 54. But something that's especially interesting to me is that with the release of those 2020 statistics, there was actually a consistent incidence rate between African American and white children. And why that is important is because previously, black children were not accessing screening and diagnosis at the same rates. And so there's been some leveling of that, which is really encouraging.

Yes, really important. It is important, you know, I will say the, the disappointing, the disappointing statistic is that Hispanic children are still going on screen and undiagnosed at higher rates. But, you know, we always have room to improve. And that's something that we need to focus on.

So we see that there has been an increase in incidence numbers. Is there environmental reasons for that? Or are we getting better at diagnosing? Yeah, so this is, I mean, that, it's a really prudent question that you're asking.

And one, that question has actually been asked for a number of years now. And the CDC, in fact, was so concerned and trying to figure that out that they have conducted their own study that has, has demonstrated that it isn't that we're getting better at diagnosis. This is truly an increase in incidence. Wow.

So really important work that you and Tina and your opiopartians are doing in learning more about it. And I know from my experience, the families that I work with who authorize for research are very excited to be a part of these changes. So I wanted to ask you, what support do we offer our families who donate and who authorize research for to autism brain net? How do we support those families after donation?

Right. You know, so I do want to recognize that the support really starts with LOPA, the team that I know that you're wonderful at working with your donor families. And we feel very privileged to carry that out with our mutual donor families after they've already donated to our program. We engage all of our families in a fairly extensive process after the donation has occurred.

And we spend hours talking with them, learning about their person. And that's really for two reasons. One is because we want to provide them with the support and attention that they deserve. But equally as important is that our researchers are keen to know who the people are, you know, who is this person who is bringing up studying at this moment.

When I think about research here at LOPA, I mean, I think Tina, Tina, Tina, Tina, Tina. And then she comes to the table and it's like, look at these amazing things. Like, what is that like for you to have taken on this role? And it's really like, you're calling to me.

Like, when I hear you speak about it, like, I get excited and I can't wait to go out in the community and tell other people about it. So what is that like for you, this transformation on this role that you've taken? I love this role. I didn't have a clue about a lot of the stuff that's going on in research until I was able to come over here and just really look for programs and meet the most amazing people, researchers, and to see their passion and what they study.

I mean, it's just awesome. And just to see just the awesome work that they're doing out there. I mean, they're changing the way they treat diseases and, you know, new medications are coming up and we do a lot with, they're trying to develop some new pain medications to get people off Opeo. Yeah, non-attemptive.

Yeah, that's a great study. It's something we need right now. But yeah, I never know. Every day's a new day.

So I never know what the day's going to be like or what new is going to come my way. It's just an incredible, you know, field. Awesome. And I like that she brings her friends to us and say, you really need to talk to these people and tell your listeners.

We love that. So Caroline, I know that you're still with us. So if folks are interested, they want to learn more about autism brainnet, where can we send them? So like everyone, we have a website, which is www.autismbrainnet.org.

And we really welcome people to visit our site. They can learn more about ongoing research that is happening. They can also see some of the tributes that our donor families have written to their loved ones who are donors of our program. And we're actually, especially, we take particular pride in our memories of Hope Paige honoring our donor families.

You can also call at 688-77-3339. So Caroline, is there a way for our families or our donors to sign up beforehand to be a part of this? So on our website, you absolutely can sign up for additional information, which I do encourage people to do. We don't spam your inbox.

But what we will do is send you a very informative quarterly newsletter that provides some program updates. But more importantly, what's happening in terms of research. Caroline, thanks for giving us your time today here on The Gifted Life. Tina, always a pleasure to have you here as a guest on the Gifted Life podcast.

Keep up the good work, ladies. We'll be back with more. Thanks for having me. On the Gifted Life, we take a moment for mental health.

Always interested to see what Sarah's got for us today. You got more, Sarah? Okay, so let me just start this by saying I am a big nerd and I still watch Pixar movies when I'm feeling nostalgic or feeling I want like a feel good moment. So you should.

Yes, I love it. So I watched the new movie, and it really, really inspired me. So for those of you who haven't seen it, Soul is about the difference between finding your purpose in life and finding your spark for life. So the characters think that your spark for life is your purpose, but really your spark for life is living to the fullest and your readiness to live.

So it's really about being in awe of the life you have. So it got me thinking because I preach a lot about finding a purpose. But what about those people who, you know, I'm lucky, my purpose happens to line up with my career. But what about the people whose careers are, they're working to work, you know, they want to make good money so they can spend time with their family, you know, they're working to live, not living to work.

So maybe think about those people, maybe I've been excluding them. So I want to talk about maybe your purpose could just be living and join your time fully. Whatever means you have, finding that spark for life within your means. Yeah, I think I think some of us that are lucky enough to have purpose within our jobs, our day to day lives.

I think it's, you know, that's such a bonus. At the same time, so many, I can tell you so many of my family friends, you know, they envy that I've got this because they don't have that from a day to day standpoint. But they do have such a purpose in different things that they enjoy in different values that they have. And oftentimes, you know, you mentioned, you know, job is a means sometimes to get to that purpose or to help them with fulfill the other areas of their lives.

So it's, you know, everybody has a different fulfillment. Everybody's got different avenues for that. We just so happen to have that combined into the same role at work. Yeah, and my changes, I'm like calendar because I have, you know, lots of kids and everybody has, you know, all these activities and I put that on the calendar.

But I always have something to look forward to every day, like, you know, what you wake up, you know, to do what, what are you excited about? And so every day it's something so it's either the kids like she was taking her kindergarten picture of my last baby. So that was exciting for me or getting as a big tournament that he's been practicing for, you know, just something like that. And so I always try to find those little nuggets that, you know, get you through the week, like sometimes it's like hard.

And sometimes that does come, you know, with work. But every day for me, it's like something different that keeps me going. Yeah. And that's how you found your spark for life as those little moments with your kids.

And, you know, in the movie, they talk about when they finally realize what the spark is, it's your readiness to live. And it makes me think a lot about people who experience depression and anxiety can be really hard to feel alive when there's a lot there's a heaviness on you, whether it's through depression or anxiety. And knowing that you are capable, first of all, of feeling excited in your life of feeling ready to live, but also that you're worthy of that. And it doesn't have to come from your job.

It doesn't have to come from, you know, finding not for profits that are amazing to you. It can be just looking at your life and what the world has to offer and feeling in awe of that and just wanting to be a part of your life. And you can do it. You can find that spark.

You're not alone. And it's not hopeless. I learned from our families, it just provides you with a different perspective because sometimes if you're in a traffic jam, it's like, Oh, goodness, I just need you to go. And then you'll talk to a recipient and they're like, Oh, that's not like jam out like a favorite song on like gets me, but like a different perspective, a different way to look at things.

And I just learned from folks who were 72 hours away from death or 24 hours away from death to, you know, take time to smell the roses because they're all so busy that I enjoy that every day. Yeah, you know, we're busy, but it's a hard place to live sometimes. Like, I don't want to take that away from that because there's a lot of things that happen in the world we live in that are hard, but it's good to remind ourselves also of how amazing it is that we're alive and that we have so much to live for. So find that spark guys and just like appreciate every day your life and living gratitude and you know, sometimes your purpose isn't your job and that's okay.

We're all just doing the best we can smiling. Can't see me that. I like a little pep talk Sarah, maybe you have a topic you'd like Sarah to cover email us info at biggipidlife.org. And our question and answer segment today, if someone donates for research, can the family find out any outcomes of that research?

The answer Laurie is yes. In many cases, you know, of course it depends on the research, you know, but for the most part, most of our research companies that we work with before we get into it, you know, we make sure that that's something that we can find out and kind of keep up with, you know, for those families. Right. I know, you know, in particular, the Apollo project that we work with that studies kidney disease in African Americans, they follow up with the families.

So you will get some updates on that. But I think if you want to know what the outcomes are or how the research projects are going, just reach out to LOPA, our family services department, and we can get you in touch with the right people to get you that information. Yeah, we will try here. And I'm sure your OPO where you are as well.

Maybe you have a question for us. Give us a call 504-648-3477. In every episode of the gift of life, we honor a hero, today's hero Jonathan Daley, and we learn about Jonathan from his family. Jonathan's donation of Orginson tissue completes his life story of caring for others.

It was his ultimate gift, which gives us solace as we learn of others who live because of him. And now we pause and say thank you to Jonathan for the gift of life. And that will do it for episode 161 of the gift of life. Yes, we did.

Special thanks to Carolyn Hare, clinical director for autism brainnet. And of course, our own Tina with their research program manager for their partnership and doing everything that they can to help advance the research for autism and giving hope to those who are living with autism. Yeah, and more come hopefully they'll be back on the gift of life with more in the coming months. Thanks everyone for listening.

Remember, you can register anytime as an organ, and tissue donor at registerme.org. And the best place to find is the gift of life. Go ahead and listen to any of our episodes on our website or wherever you like to listen, whether it's Spotify, Google, or Apple. If it is Apple, go ahead and leave us a five-star rating.

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