Khari Cain Discusses Finding “Makayla’s Voice”

Episode Transcript

Dr. Correa:
From the American Academy of Neurology. I'm Dr. Daniel Correa.

Dr. Peters:
I am Dr. Katy Peters and this is the Brain & Life Podcast.

Dr. Correa:
Welcome back or welcome to the Brain & Life Podcast. I'm so glad you're here with us. Katy, how are you doing today?

Dr. Peters:
I'm doing great. It's a little bit of a rainy day outside, but these spring rains bring spring flowers, so happy to be here.

Dr. Correa:
It seems the spring weather has been all over the place for everyone around the country, but it gives us a little bit more time inside to those last few months of just enjoying our indoor spaces and maybe listening to our music. So Katie, what music are you listening to these days?

Dr. Peters:
Well, I like a little bit of everything. Right now I'm listening to some country stars. I like Luke Combs, he did this great version of Tracy Chapman's Fast Car. I don't know if you've heard it.

Dr. Correa:
I have, yes.

Dr. Peters:
Yeah, I'm also like anything that's really danceable or uplifting. What about, what music do you like?

Dr. Correa:
Well, I do a little bit of, I guess world dabbling. I mean, my family's from Puerto Rico. I grew up dancing the salsa music and meringue kind of all the music of Salsa and Puerto Rican music all the many years is always just both fun, gets me moving. I can't resist the steps and the swaying, but also music throughout the Caribbean. I also am a big fan of more recent pop music, like Bruno Mars, and then along with the nostalgia of the classic rock and the R&B of the eighties and nineties, I think probably one of the best eras ever. Our guest today, Khari Cain, is one of the music producers that helped bring artists a more modern music like Bruno Mars to all of us. Beyond the audio mixing board, he and his wife have been loving parents and advocates for their daughter living with autism that is featured in a documentary they've helped produce called Makayla's Voice, really advocating and opening up her story and more awareness to all of the community.

Dr. Peters:
I found the trailer online for the documentary that you'd mentioned, and I thought it was just amazing how the parents are learning about their daughter in a new way via the letterboard. I have to admit, I did get a little teary-eyed watching it, but I did have a lot of hope for Makayla and her message.

Dr. Correa:
Really getting a chance like her family and her parents did to really hear the unique and empathetic perspective of Makayla herself. Being non-verbal and actually finding a way to connect and communicate with those around her which is so touching to me, seeing the documentary and we had a great discussion with him.

Dr. Peters:
I can't wait to hear more about it and to see the documentary myself.

Dr. Correa:
Welcome back. Today we are joined by Khari Cain, music producer, father and husband to his partner, Manana Cain, who are both advocates for the community living with autism and a family who has refuse to give up on uplifting the voice of their daughter and others in the community. Their daughter, Makayla Cain is a sixteen-year-old teen on the autism spectrum and a star of a recent short documentary that they have helped produce, Makayla's Voice: A Letter to the World. So you're taking a quick break from your music production and putting out hits out there to help share with our community just how your family has experienced with developmental disorders and with autism. Tell us a little bit about who Makayla is beyond the challenges that she has with her language.

Khari "Needlz" Cain:
She's a bright kid, full of life and energy. She loves music. She's always smiling, she's always dancing, always jumping. We didn't know until maybe two years ago that she's just very, very, very smart, very articulate, knows stuff that we've never taught her. We have no idea how she learned a lot of the things she knows, and she's just a very interesting child, and once again, we're finding out it's like a soul within a body that she can't really control per se. So it's been an interesting marathon. There's definitely a lot of ups and downs, but all in all, she's a great kid.

Dr. Correa:
Take us back to what you remember about seeing Makayla for the first time and sharing that celebration with your wife. How was her birth and her early childhood, what were some of the first things that you noticed about her personality? I know so many kids just start to show who they are so early on.

Khari "Needlz" Cain:
Yeah, Makayla, I mean she loved her siblings. She was diagnosed very early, around two and a half. What happened was I noticed that I would ask her to get out the tub. I would bathe her and ask her to get out the tub. She wouldn't come, and I just thought that was odd. It was like a reoccurring thing where she wouldn't follow that instruction. Then we got a call from her daycare that said she was not interacting with the other kids in her school and they didn't know what to do. That kind of struck us as kind of odd, you're a daycare. After that we went and got her tested and one thing led to another. We went to a non-traditional doctor to make sure, she made sure we got a genetics test and that's when we found out her specific diagnosis.

Dr. Correa:
Was autism a concern for you and your wife from the beginning or when you went to the doctor? What was the conversation at the beginning?

Khari "Needlz" Cain:
Well, I went to YouTube and kind of looked it up. I just looked up, my child's not getting out of the tub when I asked her, and it's just the most random thing that there was another mother on there saying that the same thing or seeing the same thing I was seeing. That was a big eye-opener.

Dr. Correa:
When you guys talked with the doctors about the symptoms that you were seeing and the challenges that she was having, what did they first suggest? Was there testing that she had done and where did that get to with the diagnosis?

Khari "Needlz" Cain:
The genetic test was the main one, and I always wonder with kids on the spectrum, if they take that step to get that genetics test or I almost feel like it should be mandatory because it's like you'll be able to rule things out. Makayla's specific syndrome is like she has a partially deleted chromosome and it's called the Phelan-McDermid syndromes. To me, it was almost like once we found that out, we were almost somewhat at peace.

Dr. Correa:
Yeah, I mean it's great that in many of our different communities we have other non-traditional health practices that can complement what's out there. It's great that you guys got through to genetic testing so early. I'm glad to hear. In our follow-up for our discussion, we'll also be talking with a medical expert. We'll discuss Phelan-McDermid syndrome. We'll also talk about autism. Some of its different causes, and I encourage our listeners to check out our past episode that we did with Abby Romeo and our medical expert where we discuss autism there and then other conditions that have autism complications. We did a series of two episodes on SYNGAP1 and Epilepsy and Developmental Disorder. Something you mentioned earlier is the beginning of this whole process, 14 years ago, just finding the resources and the answers for families with children living with autism many years ago, it was very challenging in different parts of the country. You guys were in Atlanta. Where was it that you guys got some of that information and the resources to figure out where to go?

Khari "Needlz" Cain:
Really what happened was you learn from the other parents at the schools that they go to, the special needs schools that they go to. They're a lot of times the biggest resources that we have because we're all going through this thing together and we all seem to, it's like a community that shares information, "you should try this doctor. Oh, we didn't have a good experience here. Oh, they're charging too much." I mean, that's one thing I see a lot and I think it's unfortunate. Some of these tests, some of these evaluations, I mean it's really, really, really expensive and you try to get therapy and therapies.
At one point we were paying over 6,000 a month for therapies and trying to just attack it and trying to really get ahead of it because they said early intervention is really key. So for us, I think we went through this thing, it was called Babies Can't Wait. It was like a program with the government that could give us a diagnosis and then could give us some additional resources. That's really where we started here in Georgia. This thing, Babies Can't wait. They had somebody come out to the house, see Makayla, and from there they said, okay, she should probably go to this school. That's where it started.

Dr. Correa:
I think you share that you guys had your own unique experience in finding resources in the community. Each state, each city can be different. As you said, $6,000 a month for therapies, that's a lot. Many people can't even afford or imagine being able to spend that. I think it seems like unfortunately the resources aren't as easily accessible for everyone in the community.

Khari "Needlz" Cain:
Yeah, that's what it is. I mean, we found later statistics show that those in the urban communities, they normally are diagnosed much later or they're misdiagnosed. You see that in the school system. There's kids that may be on the spectrum that may not have been identified. I think it's definitely important. It's a part of our foundation, Makayla Moving Autism, to highlight that and bring awareness to the fact that a lot of children in urban communities, black kids, Hispanic kids and lower income places are just not as informed and they don't have the access to the resources.

Dr. Correa:
I'm glad that both the documentaries helping support the foundation and you guys are starting to help that work and to bring awareness throughout the community. So where did the idea of doing the documentary come together? You've been producing music, so in a way where you at the idea of almost producing Makayla's Voice?

Khari "Needlz" Cain:
No, to be honest with you, this is the second kind of film on Makayla. I've always thought that our family was interesting in the sense that we have some interesting dynamics. I'm a music producer and my wife's an entrepreneur. She comes from a retail background, but she's in the fashion world. We have my youngest daughter who's an actor, and then we have my daughter Makayla who has autism. I just thought that on a day-to-day basis, there's so many ups and downs and there's funny, there's humor, there's sadness. I always thought that it's something for people to see. It's almost like a modern Huxtable family. You know what I mean? So the first film that we did on Makayla, once again, it wasn't supposed to be about Makayla. It was supposed to be about this company I was doing some work for took interest in my life.
They just saw how kind of crazy it was for me going from home to talking with the school district about Makayla to trying to produce and all these different things. I think they saw the story within my life, the story of Makayla and just our relationship, me taking her to therapy and all these different things. So that's how the first film came about. One of the guys that worked for that company, we kept in contact and I saw him four years after the first one, and I was just telling him, we live in the same neighborhood, we ran into each other in the restaurant. I was like, "hey man, you should really talk about maybe doing something else or doing another film because Makayla has really, really, really progressed." So he was like, "yeah, let's check it out."
What I did was I sent him the transcripts from Makayla's lessons with Roxy and he saw, he read through all the transcripts and saw a story within that and just came up with a really beautiful piece of art and we're really excited about it. Once again, like I said, it's a marathon. She's not the same child that she was during the film. Now she's hyper. She's still fun-loving. She loves music and all those same things, but she won't sit down at a table to just do what... You know what I mean? [inaudible 00:13:51] has to stand up. We have to almost confine her to a room where she can't run out and it's different, but that's just the life we live and we're going to continue to live.

Dr. Correa:
Yeah, I thought mean, it was amazing the context that, because of that language barrier, up until you started to work with Roxy in the letterboarding, you guys didn't really know all the context that Makayla had in herself. Through that in the movie, you see how she's able to express herself so clearly and in a lovely way.

Khari "Needlz" Cain:
Yeah, that's probably one of the weirdest things is we used to joke because we'll be listening to a song in the car and then a couple days later we'll see that that song was pulled up on YouTube. We used to joke, ah-haha, Makayla can probably read, it was like a joke, but in actuality I think she could read and she had some classes, not very much. It wasn't like a traditional reading and writing class or anything like that. She figured it out. After the fact, she says she just sees patterns and everything and just somehow knows how to put everything together. Once again, she's never been taught that. Then on top of that, the way she speaks, how eloquent she speaks, the way she puts her words together, it's so poetic. For example, we took her to the zoo a couple days ago. We were asking her after the fact, what was your favorite animal? She said she really liked the giraffe because the giraffe was closest to God.

Dr. Correa:
Oh, wow.

Khari "Needlz" Cain:
Who thinks of that stuff? You know what I mean?

Dr. Correa:
A while ago I read one of the books by Temple Grandin and just how she's used her connection to other people's emotions and seeing patterns and systems in the world, and hearing Makayla's Voice through the movie almost makes me think of someone who thinks at that level, like Temple Grandin.

Khari "Needlz" Cain:
Actually, what's funny is my mother met Temple Grandin and... I didn't know who Temple Grandin was at the time. Then my mother just, she said, "hey", just threw me on a FaceTime with her. But yeah, I think it's amazing. One other thing I noticed that other spellers like Makayla, they may not speak as eloquent as her sometimes, but they refer to themselves as the autistics. You know what I mean? It's like they have this same context or point of view for each other. You know what I mean? They all look at the world... They know they're different, but the way they look at the world is different.

Dr. Correa:
They feel some unity in their perspective.

Khari "Needlz" Cain:
Yeah, I think it's interesting, but it's not like they're sitting there talking to each other. It's not a coincidence per se. But yeah, I just always thought that was interesting too.

Dr. Correa:
So a big part of this and the movie and in your family's life is Roxy, her therapist. So introduce us to who is Roxy and what was the experience of when she first started working with Makayla and you guys started to get it clued into what was going on?

Khari "Needlz" Cain:
So my wife wanted me to go and do this, a letterboard session a long time ago, and I did it, this is maybe about six, seven years ago. I did it and I was a little pessimistic about it because it just seemed really weird. So I was like, I don't know, this is expensive and I don't get it. I didn't quite understand it initially. So we stopped for a couple years and then we, through a parent at another school, was like, "you should try out this ReClif place because they do some OT stuff and they also do letterboarding." I was like, my wife convinced... At the time, we had an au pair that lived with us to help with Makayla. We had the au pair go and take Makayla to this ReClif letterboarding session, and our au pair was like, "hey, this is actually really good. You guys should come see this, what Makayla is doing."
I went to one session and once again, she was answering the questions to whatever the lady was reading. So that's where it was initially, and I was like, that's amazing. This is amazing. But the place was really far from us, so we wanted to try to have somebody come to the home and we found Roxy and started out the same way, but it slowly started to go from lessons to one day she's like, "hi, mom", like typing as her mom's in the room. We're like, "what?" Then she starts writing all these different things and having conversations with us for the first time. So it just totally changed. It's so emotional to go through those things because it's like a miracle. Once again, you're asking questions, well, did you know this? What do you like about this? This is all around the time when we met Julio and we were just like, look, you have to see this. You have to see this, this is like a miracle or feels like we're witnessing a miracle. You know what I mean?

Dr. Correa:
How old was she when you effectively really starting to hear her and who she is for the first time?

Khari "Needlz" Cain:
Two years ago when she was 14.

Dr. Correa:
Wow. So guys went 12 years doing everything you can to support and help her with her development and connect with her, but never actually knowing how much was going on.

Khari "Needlz" Cain:
Yeah, we didn't know what she knew. She has a whole nickname for me. She loves Cancun. It's just crazy. She's a normal child. But then it's also... The other part of it, it's like she can't really control her body. She can control what she thinks inside, but there's a disconnect between what she thinks, what she wants to do, what she's supposed to do, and her body. She says that she can't control her body. She says her body's in chaos. She wants to run all the time. She wants to escape and be disobedient and do what she wants to do.
It's kind of like in the movie she says her body takes it too literally and just overdoes it. You know what I mean? Whatever she's thinking. So I hate the fact that she really can't control her body, but she's in there. You know what I mean? But she can't really control herself. But for us, it's good that she's able to articulate. One of the biggest reasons why we wanted her to speak and communicate with us, to let us know if she's in pain or she's hurting or anything like that. So yeah.

Dr. Correa:
Yeah. I mean, I found it incredibly touching just that ability that you guys are now having to connect with her, to share with her and everything that you're doing to help her express herself. Then now what you're doing also to help improve and increase awareness in the community and the potential for more people to be aware of these possibilities.

Khari "Needlz" Cain:
I just want people to have a sense of empathy, a sense of patience in understanding kids that are on a spectrum, that they're just as bright, they just may not be able to articulate. That's kind of what we hope this particular film brings awareness to. It's just to really humanize and really empathize with families that have children on the spectrum. Yeah.

Dr. Correa:
Yeah. Well, appreciate you so much and to you, your wife, Manana and Makayla and your family for bringing us this story, for doing everything that you're doing to spread awareness throughout the community and to uplift the voices of all of us.

Khari "Needlz" Cain:
For sure. I appreciate it. I appreciate your time and hopefully everybody will get a chance to check out the film in one way or another soon. Appreciate it.

Dr. Correa:
For our listeners, we'll continue our discussion with a medical expert to talk about autism, speech and language disorders and learn more about Phelan-McDermid syndrome. Can't get enough of the Brain & Life Podcast, keep the conversation going on social media when you follow at NeuroDrCorrea and at Brain & Life Mag or visit Brainandlife.org.
That was a really touching conversation with Khari Cain about his family's experience with his daughter Makayla, finding her voice and helping her thrive with her autism. I'm now joined with Dr. Deepa Menon. She's a pediatrician and child neurologist and a specialist in neurodevelopmental medicine at the Kennedy Krieger Institute in Baltimore. You may remember a few episodes ago we actually interviewed Freda Lindsey also who works at the Kennedy Krieger Institute. Dr. Menon, thank you so much for joining us today.

Dr. Deepa Menon:
Thank you for having me. This is a real pleasure to join this conversation.

Dr. Correa:
Now, I'm wondering from your experience and the knowledge that you have working with people with various different language developmental issues on the autism spectrum, is the story that Makayla has had in her family where she went years of being nonverbal and then through therapy, found an ability to engage with her family? Is that something that others see?

Dr. Deepa Menon:
Yes. I would say in my years working here with these families and children on the spectrum, I always find it's amazing how the brain is so plastic and we learn about how they learn and how they interact. I feel especially with children on the spectrum, giving them a voice in whichever way, if they can communicate with pictures, if they can communicate using any augmented communication device, which can help them express their thoughts. There have been families who, once we treat their attention and the focus and now they're able to learn and then they realize that there is an importance for communication, then they start engaging more. So it's not unusual, and I do realize it with Makayla, she's a teenager, and for a long time there wasn't... So that way it's a little unusual. But yes, we do have children who for a long time did not communicate, but once they found the appropriate method of communicating, then they open up and they're able to tell us more.

Dr. Correa:
That's a wonderful aspect of hope for those living with the situation. Now for our listeners, we've had our past episodes where we discussed autism spectrum disorders with our medical expert, Freda Lindsey. We had our two episodes where we interviewed and discussed both autism spectrum conditions and epilepsy with families living with SYNGAP. In each of those episodes, our medical experts give us a little bit of context on autism spectrum disorder, but Deepa for someone who's new and whether it's a friend, family member or someone who first comes to your clinic and hasn't really heard or has heard lots of varying information online, how do you explain to them what is autism spectrum and why their children or the person that they know in their family or community is having a problem with their language?

Dr. Deepa Menon:
So I mean, again, as you know with autism spectrum, it's what we call a neurodevelopmental disorder. So it's a brain-based disorder, and it's manifesting or presenting with a lot of significant behaviors or behavior characteristics, which help us make a clinical diagnosis. So we use two areas that we look at. One is the way the child communicates, both for functional communication to get the needs met, but also mainly how they use language to establish connections with their family, with their peer group, how they play and have the social interaction. Then the second area that we look at is where they have restricted behaviors or repetitive behaviors. Some difficulty with processing sensations, either their hyperreflexic or they respond in a heightened way or sometimes they need a lot of stimulus before they can react to things. So those are the two areas we look at, the social functional communication and the restricted repetitive behaviors.

Dr. Correa:
One thing that came out particularly in our discussion with Khari was that initially they took Makayla, she was having challenges, actually to a non-traditional health practitioner. They pointed out a few issues, then helped them get connected with physicians and actually ended up... She got genetic testing very early on, and that's when they found out that she had a specific genetic diagnosis. Before we get to that, when do you choose to do genetic testing, what kind, and help us understand why it's important in many of these situations to get genetic testing done for the individuals?

Dr. Deepa Menon:
So one thing, like we talked about with autism, it's a clinical diagnosis. We are looking at certain behavior. So there could be different reasons you can present with autism, you could have prematurity, you could have had some brain injury, you could have had seizure. There are different things which can cause autism. We know that with our current state of genetic testing in at least about 40 to 50% of the kids with our current genetic testing, we're able to find a genetic cause that still leaves a large number of children who don't... We still don't know. It doesn't mean that we won't know in the future as the genetic tests become more sophisticated, we might be able to pick up a larger group.
So I think it's very essential that we do do genetic testing. It's something that in most of the kids that I see or every child that I see, I do offer it to the parents and then some families might decide to go ahead and get the genetic testing or not. But it's something that we do tell, because we know in autism there's a high heritability of autism. So if you have one child with autism, the chance of a second child in that family have autism or autism spectrum disorders goes up to about 30%. But the two indications for getting genetic testing when you have a child with a neurodevelopmental issue is if you have cognitive delay, which is intellectual concerns or with autism those are two things where all insurances would most probably cover genetic testing.

Dr. Correa:
Can you share with our listeners a little bit more context about what is Phelan-McDermid syndrome and is this something that many people should be aware of or concerned about?

Dr. Deepa Menon:
Like I said, there are certain syndromes which are more highly associated with autism and Phelan-McDermid syndrome is one of them. It's a 22q13 deletion syndrome, and it affects a gene called the SHANK3 gene, which is associated in the synaptic processes. So this is one of the syndromes we look for. Again, like you said, they can present with autism, they might have language issues, intellectual issues. It's important to know about these genetic syndromes because they also have reflux disorders with higher incidence of seizures. So having a genetic diagnosis helps us to not actually forecast, but maybe predict what are some of the things which could occur in conjunction with the autism.
So if you have a child with just autism, you really don't know. I mean, the lifelong course is pretty okay. You're going to be working on communication and behaviors, but knowing that this child is at a higher risk for seizures might help the physician and the family be more aware of it and thereby do more prevention. You can look out for seizures. You can treat the seizures much more aggressively if you know that there's a particular genetic syndrome. Same thing with tuberous sclerosis, we know that yes, they have autism, but there's also higher incidence of having seizures. So that might be knowledge which is helpful for the family, for the patient, and for the physician who's treating the child.

Dr. Correa:
Yeah, I know I've seen in my practice as an epileptologist or an epilepsy specialist, knowing that a child or adult's diagnosis and its genetic cause for their autism helps a lot in interpreting sometimes little behaviors that very much could be seizures, but when we're not really sure, maybe they can't tolerate wearing the EEG or they can't tolerate staying in the hospital, it helps us work with the family in deciding whether or not someone should be on medicines or indications to make changes or sometimes even interpreting subtle little things that might be seen on their EEG monitoring. Now let's get back to the story of finding Makayla's Voice, we shared and the situation that as they started working through different therapies, they found an ability to enhance her communication and interact with Makayla. Specifically, one of the types that's featured in the documentary and shared by Khari is letterboard speech therapy. So help us understand what that is, why it's a unique process in of itself, and then what some of the other communication development therapies there are.

Dr. Deepa Menon:
So I tell you, it was pretty interesting when you told me [inaudible 00:31:32]. When I first heard about it, I was like, okay, what exactly is letterboard therapy? I went back and looked at the video and it actually is pretty good. That actually shows that she has a literacy component to be able to actually spell it out. So that is actually, to me, intriguing because most of the time we start off with somebody very young. We're starting with children as young as 18 months, and they might not be at the level where they really understand phonics and using a letter board, but maybe that's something that can come along. But usually when they're very young, we might start with something called a PECS, which is picture Exchange Communication System where they're using visual symbols, symbol of a fruit, symbol of a drink of water, things like that.
So they can use the visuals to communicate the need. That's the very basic low tech question. Then you can take those pictures and put it into a device, which could be an iPad. It could be a dedicated augmentative communication device where the child is learning to press on the buttons and it comes up with sentences. So they can say, "okay, I want milk." They're going through different screens and there's a lot of software now which is helping. The advantage of these devices is the child is not only learning to use a sentence, but they're hearing the model. So when you press the button, the machine is saying the words and then they're hearing the words, and then that actually helps to facilitate or improve communication. In the past, people have tried sign language. It's sometimes very hard in children on the spectrum because they don't really, they might not have the visual attention to how they don't know how to imitate.
So sign language has not been very successful. I mean, I'm not saying it never works. I've had in my years, I may have two or three patients I can think of who really do use sign language effectively. Most of the time it's very hard with children on the spectrum, but I tell parents, any way they can communicate, can use the visual pictures with any of these devices. In cases like using... I would think of this letterboard as another part of the augmentative communication where the child is learning to actually put the words together. Another way is using a typewriter, like a keyboard. If she can use the letterboard, can she then use it on a computer? Can she type it out and use that? So there are different ways of communicating the thoughts.

Dr. Correa:
Interesting. Yeah, so I guess it incorporates even that much how their functional or their coordination and control of their arms and hands aspect. I know that Khari was telling us that for Makayla, unfortunately, she feels so internally disorganized. Once they were able to communicate with her about her being able to plan her movements and do her movements, that's been a big challenge and limitation for her. But at least in this way, she's able to develop a way for communication. It's interesting because, so she spent almost 10 years of her life without really clear consistent ways of communication, but her parents noticed that she was able to navigate the websites and online. So really their senses of the only place that she learned literacy and words more consistently, effectively may have been in a way of teaching herself from the available materials online.

Dr. Deepa Menon:
It's amazing. Sometimes it's almost like the children are... Like I saw where the father thing... She's sort of locked in almost, and we need to figure out a way of getting her out of that. That's what we all work with, our children hoping that they come to the point where for them, they realize I actually don't need to be in my own locked in system. I can communicate with somebody else and get my needs met, and that there is value to that communication and building that relationship. So usually it comes along pretty well.
That's why more and more the thought in the field is that let's introduce those communication systems earlier. In the past, it used to be that some speech therapists, even now I have, which is one of my biggest bugbear when families hear, "come back to me once you have some speech", and it's like, no, we need to start even pre-verbal. We have to be able to teach them. That's how we work with our babies. We teach them imitation, we teach them to interact. That's the same principle we should use with our children on the spectrum or any other neurodevelopmental disability.

Dr. Correa:
A big aspect about this is, especially with communication disorders, is the stigma of the individual and the interpretation of them not being intelligent or not being capable or able to interact with others. Many times people will just avoid them or not really interact with them because an interpretation that it's not possible. How do you approach that and discussing it with the parents who don't see the ability to interact yet, or their frustration once they start to find an ability to see and connect with their family member, but everyone else around them and in the world just seems to walk past and not engage with them.

Dr. Deepa Menon:
That is an interesting question because sometimes I think when you ask the history and you ask them, who does the child seem most comfortable? Then they might tell you, this child does well with the older cousin or an adult. Then you're trying to figure out what is it that's difference between that and the peer group. The thing with when you have the peer group, they might come up to you and say, "hey, you want to play?" If the child doesn't interact or respond within a certain period of time, then the other neurotypical child is going to go away to the next activity.
Whereas with an adult or an older child, they might have the patience to actually create space for this child to interact or give a response. Because I've seen in some of our children, it's not that they don't have the desire to communicate or be like the social interaction, it's that they just need a little extra time so that there's a word approximation. So something like that, if you can build those little interactions throughout the day, that might then be a friendly atmosphere, a place or environment for the child to then start to interact.

Dr. Correa:
For the rest of us in the community who don't live with someone who is experiencing a communication disorder or an autism spectrum disorder, how can we improve our empathy and interactions and engagement with people that we encounter who have a difficulty with their expression or even maybe nonverbal?

Dr. Deepa Menon:
I think first to find out how the child communicates either with, I keep saying child because that's who I work with, but an individual would be to figure out how they best communicate. Do they prefer written language? Do they prefer something to be typed for them? What is the way that they... Are they pointing? Are they taking you by hand? How do they let you know what they want? Maybe starting there like finding out how does that next person communicate and then giving them the options so that you might have in your office or in whichever environment you are, you might have everything written in a certain way. Is that something that can then be converted into a visual? Is there a way that we can create a social story? What are the different other aids? So that your workplace is more neurodiverse, your schools are more neurodiverse, your industry, your shops, that you have those different options.
It's like, think about it, if you take me who doesn't know much of Chinese and put me in China, I don't know how to communicate. How do I then communicate? Do I use gestures? Do I point? Do I find a device which can translate for me? So that's where our children are, right? They're in this foreign country where they don't understand the language, so how do we get them to a point where they can communicate the needs? So I think if you think about it that way, it's not just going to help the individual who's having communication difficulties, it's going to help the larger society. If we come up with ways which are more inclusive. I think we tend to get very hyper-focused and narrow when thinking about the individual disability. But I think we need to think about inclusivity. What works for an individual with disability works for the general society as a whole. So thinking about different ways of improving that, I think is going to be helpful.

Dr. Correa:
That's wonderful. I think that relates back to, like you said, each individual and their experience with autism spectrum disorders is unique. So there's really no one way. So having an attention to each person's unique abilities and sometimes some of their own characteristic superpowers of what they were able to do and harnessing those, improve all of our interactions in society. Now you see patients and practice in the Baltimore area, Khari and Makayla's family lives in Georgia. They were thankfully able to relatively quickly get to some of the services that they need, get involved in early intervention programs in Georgia and get the genetic testing. But it's not always that easy, particularly for many families, especially if they have several unique challenges socially or structurally to get their healthcare. What are some of the challenges that you've seen in your practice and what are some ways that people who might come from under-resourced or marginalized communities, that they can seek assistance and find what they need for these developmental disorders?

Dr. Deepa Menon:
I would say even though, I mean Maryland, it's a small state, but even that the resources are not matched across the state. There are certain pockets where we're very under-resourced. So I think it comes from different things, right? One is early understanding or early diagnosis and being referred early on to the early intervention system. So I think that is the first thing. It's families being aware of it, and I think over the years, like American Academy of Pediatrics and Neurology and so on, they've done a good job in talking about developmental concerns and screening for things. So that has actually moved the needle. I remember when I was doing training, we used to see kids when they were five and six, and now I'm seeing kids nine months, 18 months coming in with concerns for autism. So they moved that needle a little bit because parents are more aware, they're seeing it in the movies and they're aware of it, they're getting screening.
So I think that is one thing that's first is early diagnosis and getting them connected into early intervention systems. Then if there are medical concerns, getting connected to a tertiary center where they do have the specialists. Even in Maryland, I would say 10 years ago, I was realizing that there were certain areas in the state where they really did not have a connection to a center like ours. So I think the pandemic as well as even before the pandemic, I was really interested in telemedicine. So that has sometimes also helped to bridge the gap where we are able to actually see these children, get a history, at least try to get a diagnosis so then they can get connected into early intervention services. During the pandemic, I think our center, our speech therapists as well as genetic counselors, we were able to do a lot of these kind of counseling as well as therapies online.
So that is one option. It's not perfect world. I mean, there are some therapies which we cannot do via TeleThing, and we have to do it in person, but at the bare minimum, they should be able to get at least connected to a center where they have specialists. Most of the primary care physicians are able to do a good job, but if there are certain things which are not available in the rural areas like a sleep specialist or a GI specialist, things like that which are associated with autism, hopefully you're able to connect with them either in person or virtually to get some of those resources.

Dr. Correa:
Then maybe to move away from the deficits and the concerns and the limitations. What can we all learn from nonverbal individuals living with autism?

Dr. Deepa Menon:
I would say the amazing fact that the brain is very neuroplastic, right? I mean, I have been so pleasantly surprised. I've seen kids when they're like six, nine months, 12 months, and they're not doing anything. I see them at three and four and they look amazing. They look very different. They might have some slight language delay. They might have attention problems, but not as much as when they were younger. So I always tell parents, don't lose hope because the brain is growing at a rapid space and they learn, and even if they're nonverbal, they're still going to be able to communicate. They're going to try anyway to communicate, and they're going to try and be socially interactive and the child is learning every day.
So it's up to us to figure out how do we engage with the child? How do we get them to a point where they're learning and progressing? I mean, I think every child grows, every child progresses. They grow at their own pace. It's up to us to figure out how to support them, and then what is it that we want them to look like when they're... What you would want them to look like in three months? What do you want ultimately? Ultimately you want a happy person who's connecting to society, who's productive, who's living their best life. So how do we get them to that state and what do we need to do to support them?

Dr. Correa:
Hopefully, we can all stay in the moment, find the ways to happily communicate, interact, and engage with each other, and as you said, live our best lives. I think it's amazing to see the many ways that individuals can learn to communicate and how some of us sometimes are stuck in our mind of words, and to really connect and find a way to connect together. Thank you so much, Deepa, for taking the time with us today.

Dr. Deepa Menon:
Thank you. It's been a pleasure. Thank you so much.

Dr. Correa:
Thank you again for joining us today on the Brain & Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain & Life magazine for free at brainandlife.org. Don't forget about Brain & Life in Espanol.

Dr. Peters:
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Dr. Correa:
You can also find that information in our show notes, and you can follow Katy and me and Brain & Life Magazine on any of your preferred social media channels. We are your hosts, Dr. Daniel Correa, connecting with you from New York City and online at NeuroDrCorrea.

Dr. Peters:
Dr. Katy Peters, joining you from Durham, North Carolina and online at KatyPeterMDPhd.

Dr. Correa:
Most importantly, thank you and all of our community members that trust us with their health and everyone living with neurologic conditions.

Dr. Peters:
We hope together we can take steps to better brain health and each thrive with our own abilities every day.

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Khari Cain Discusses Finding “Makayla’s Voice”

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