From Adolescence to Adulthood: Exploring Autism with Abbey and Christine Romeo

Episode Transcript

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

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

Dr. Daniel Correa:
Saludos, and thank you for joining us again on the Brain & Life Podcast. Katy, how are you doing this week?

Dr. Katy Peters:
I'm doing great. Definitely recovering from Thanksgiving. How about you?

Dr. Daniel Correa:
Oh, I'm great. I'm gearing up for our Christmas holidays and have a little bit of music and arts in my brain. It definitely is something that helps me with coping and balancing out the stress in our lives and work. Where do you find the arts and music fit for you?

Dr. Katy Peters:
Well, definitely I love to dance and go to a good holiday party, and of course I do enjoy caroling with Joy to the World being my favorite song. So how about you?

Dr. Daniel Correa:
In my culture in Puerto Rico, we have a different style of caroling, Parranda music. So Spanish Christmas music and going from household to household was just a different and fun experience when my family would go to Puerto Rico and visit for the holidays. Anytime I'm getting ready for the holidays, even after Thanksgiving, I'm already starting to listen to that Salsa Christmas music from the Caribbean and just reminiscing of those childhood days.

Dr. Katy Peters:
That sounds like a lot of fun.

Dr. Daniel Correa:
Our guest, Abby, really loves music and has incorporated music in many ways in her life to balancing out and overcoming some of the challenges of living with autism. Her mother, Christine Romeo, also helped incorporating music and arts in her education and early on trying to help her move forward as an adult and making an adult transition, which is something I think every parent has this challenge with any child, let alone someone with a neurocognitive disorder.
We also then interview our medical expert, Dr. Wilfreda Lindsey from Johns Hopkins and the Kennedy Krieger Institute. She talks to us about understanding autism, developing an empathy for others' experiences of living with autism and autism spectrum disorders. And as we were just talking about transitioning children with developmental disorders to adulthood, and we talk about many other complimentary therapies beyond the applied behavioral therapy like music and arts and how those things can compliment in helping an individual and their family.

Dr. Katy Peters:
I believe that transition to adulthood from really the enclosure of having the great care like an institute like Kennedy Krieger is so important and I'm looking forward to this episode to just hear about that.

Dr. Daniel Correa:
Stay tuned also and make sure to subscribe to the podcast for one of our upcoming episodes. We will be having a discussion with Cynthia Stone about her documentary keys, bags, names, words, and also featuring Walt Dawson. They were both fellows as a part of the Global Brain Health Institute and Initiative, really working to bring lots of differing perspectives on how to tackle the epidemic and the pandemic really of dementia affecting the world overall.

Dr. Katy Peters:
We also will have a future episode where we're breaking down and reporting on some studies on dietary interventions and exercise in neurologic disease diets such as the mind diet and Mediterranean diets and supplements and foods rich in omega-3 fatty acids as it pertains to the potential risks of developing Alzheimer's or ALS. We'll also discuss if there's a link between exercise behavior and the risk of developing Parkinson's disease and questions still really remain how these healthy habits can improve our brain and protects us from disease. So check out this future episode, Neurology in the News where you and I will be discussing these interesting studies and should we really take them with a grain of salt.

Dr. Daniel Correa:
I'm looking forward to all of these coming episodes and I hope you enjoy this episode today.
Welcome back to the Brain & Life Podcast. Today, I'm joined by two guests. Abby is an artist and advocate living with autism with the support of her mother 20 years of speech therapy and many others. She's completed a specialized education program in LA called the Bridgeport Program with an organization called the Help Group and later a career transition program. She was a member of the award-winning Miracle Project and later the Spectrum Laboratory in LA and uses the arts to expand her creativity, social skills, and musical interests.
Abby has written and performed five music videos where she shares her artistic perspective on living with autism, and you can find those on YouTube. She's also passionate about animals and volunteers in animal rescue and started her own thriving hat business called Made by Abby. We're also joined today by Abby's mom Christine. Christine is a single mom to both Benjamin and Abby since they were five and six. She spent 22 years in therapy rooms advocating for them and their individualized education programs or IEPs and created individualized interventions for Abby. All this while also working as the director of communications and senior programs at the Farrah Fawcett Foundation in LA.
She and Abby both appeared on the Netflix show, Love on the Spectrum with both Christine and Abby sharing Abby's autism journey also on social media and TikTok where Christine is known as Abby's mom, 17. Thank you Christine and Abby for joining us today.

Abbey Romeo:
You're welcome.

Christine Romeo:
Thanks for having us.

Dr. Daniel Correa:
So, Christine, I wanted to go back. Tell us about Abby's childhood before you noticed anything was different.

Christine Romeo:
Well, it's tough when it's your first child. I wasn't one of those moms who said, "Oh, I want to have kids and start a family. I didn't even have that much experience in it." So I'll just put it this way. At one point, by the time she was about 18 months, I thought, this is the hardest thing I've ever done and, "I'm unequipped, I'm a failure. I can't do this. I'm doing something wrong because if everyone has kids and they have more kids, something isn't right."
But that really was the challenge of the beginnings of autism. Then I had a second child when Abby was 19 months old. And then when he was born and he's a typical kid and I thought, "Oh wow, now I understand because they give so much and they reciprocate so much." But sometimes a child on the spectrum is not able to do that.

Dr. Daniel Correa:
I'm sure then her being your first child, you weren't sure and you felt like how much it was you struggling versus her having a challenge. In retrospect, what are some of the first signs that you felt like you noticed?

Christine Romeo:
The biggest sign was a lot of crying at nap times when every other kid is napping at 10:00 AM, she would be crying in the stroller. You know how kids fall asleep in the car or in the jumpy chair when there's movement? That didn't happen here. So I remember thinking that was kind of strange, but the biggest part was attention and tactile input seeking behavior. So in the occupational therapy world, you've got your sensory systems, proprioceptive input, vestibular input, tactile input are the internal systems and she put everything in her mouth to the point by the time she was two years, three months old, the preschool asked her to leave.
They said, "We can't have your kid here. She's putting everything in her mouth. It's a danger." Leaves, rocks, sticks, rabbit poop, which she now laughs about. Remember that, Abs?

Abbey Romeo:
Yeah. But I'm also a typical kid too.

Christine Romeo:
I know, but we're talking about back then. So anyway, so those were some of the things that were different and I had to say to the pediatrician, something is wrong and she wakes up in the middle of the night. This was the other sign. The irregular sleep patterns. And I remember thinking, why won't her brain shut off? It's still going. She must be a genius. It's just not shutting off. At two in the morning she'd be up for the day. So all those three signs led me to then talk to the pediatrician. He said, "You can get her evaluated." But then I started comparing her to my friend's kids and seeing that they just were doing things that she couldn't and that led to a diagnosis at just around that time, two and a half.

Dr. Daniel Correa:
So, Abby, when you were younger, do you remember how you first noticed or how did you know that you had autism?

Abbey Romeo:
Because I went to an autism school and they were using the autism word there. And then one time I came home and I asked my mom, "Do I have autism?" And she said, "Yes," and that made me very angry.

Dr. Daniel Correa:
Before that, did you notice any differences?

Christine Romeo:
Did you feel different at all?

Abbey Romeo:
I felt different. I felt like not human. I felt like Ariel from The Little Mermaid because she was a mermaid. She was living in a world alone. She couldn't get her words out, so she wanted to be where the people were and I wanted to be where the typical kids were. And when she became human, she couldn't talk. That's how I felt.

Dr. Daniel Correa:
That's very helpful to think of it that way. What are some of the biggest challenges you've had to overcome after you've noticed this?

Abbey Romeo:
20 years of speech therapy because I couldn't get my words out and my brain wouldn't do what I was telling it to do. I sat in my room and I was like, "Stupid brain. Why won't my brain do what I'm telling it to do?"

Christine Romeo:
So she was about 12 when she actually said that, and Abby did not have a lot of clear thoughts that I could understand to help her. So part of it is a guessing game. You're playing detective all the time. You're trying to figure out cause and effect, antecedent to a behavior. What makes her happy? Because she's not able to really directly express it. So one day she was sitting in a room and she actually just said those words, "Why isn't my brain doing what I'm telling it to do? I'm going to take my brain out of my head." You literally said, "I'm going to rip it out and give it to somebody else. I'm going to take their brain and put it in my head."

Abbey Romeo:
Unless we could switch brains.

Christine Romeo:
Right. Well, that's what you were trying to say. So I grabbed my phone and I said, "Say that again, tell me again." She said it exactly the same way. She was about 12. Weren't you 12? And it's the first time she ever had such specific targeted, expressive language that I could understand. I could see the desire to function, the desire to execute an action, but that the brain wouldn't do it. And that gave me so much patience and understanding to stop even expecting her to look at the world the way I did if her brain's functioning differently.

Dr. Daniel Correa:
And before that, what did you do to help her get to that point where she could vocalize that?

Christine Romeo:
Well, the biggest thing in Abby's autism and I'm very clear to say Abby's autism, I don't say autism anymore because it's 17 different levels of functioning. There's people with just sensory issues that are autistic. There's people with non-speaking individuals. The spectrum has become so vast. I feel like it's a blur and just a generalized term that almost is ineffective. So I say Abby's autism to help people understand it's this kind of autism, the kind where you have a communication problem because so many people do not have a communication problem that are on the spectrum.
And so for me, I got the speech right away and it was just Abby and a therapist. I sat in, I can't tell you how many times of sessions because Abby had anxiety. She wouldn't go into the rooms without me sitting there and she had to be on my lap. So that's how I really learned so much. But from there, when she got into school, I kept it individualized speech until she was like 12. And then I did small group speech because at some point it has to be with another person and it has to be with a peer. So then I put her in. But I defined it as no more than one other student and then two other students.
Because if you don't define what small groups mean, our lovely school district will put 13 kids in a room and call that small group speech. And I'd say, "Well, if she can't have a reciprocal conversation with one other student, how can she have it and fight for expressive language in a group of 10?" And I think that model for me was the key to getting her where she is today.

Dr. Daniel Correa:
Abby, it sounds like you're a big Disney fan. So are there other stories from Disney and other characters that you feel like has helped you understand how you're feeling and could help others understand you?

Abbey Romeo:
Lion King. For example, I did not like when Scar killed Mufasa, his own brother. You know why he did that? Because he was jealous. Because he wanted to be king. Because he was jealous.

Christine Romeo:
What did that remind you of?

Abbey Romeo:
That jealousy is a bad emotion.

Christine Romeo:
Do you have jealousy sometimes?

Abbey Romeo:
Yeah, but not like that. Differently. Not as bad as the villains.

Christine Romeo:
What are you jealous of?

Abbey Romeo:
Typical kids. I used to be jealous of typical kids. I would immediately copy them. When a typical kid would fall asleep, I would fall asleep. When a typical kid would sneeze, I would sneeze also.

Christine Romeo:
So your jealousy is because you wanted to be typical and have that typical brain, and that's why Lion King feels the same?

Abbey Romeo:
Yeah.

Christine Romeo:
You were telling me about a really good one just the other day. Who did you feel like in the cold world?

Abbey Romeo:
Elsa.

Christine Romeo:
Tell them.

Abbey Romeo:
Elsa from frozen ran away from everyone because she didn't want to hurt people. I feel like that sometimes. She couldn't control her icy powers and she froze everything.

Christine Romeo:
Can you explain what you mean by icy powers?

Abbey Romeo:
I can't control my autism. She couldn't control her icy powers. So Frozen is another one.

Dr. Daniel Correa:
Abby, what do you want people to understand about you?

Abbey Romeo:
They want to understand autism, the spectrum. I think in memories and categories. I put things I like together and things I don't like together.

Christine Romeo:
Tell them about the memories.

Abbey Romeo:
There's a show called This Is Us, and there are flashbacks in it from when they're babies to kids to teenagers. That's why I love that show. That's one of my favorite shows because of the way my mind works.

Christine Romeo:
The same way?

Abbey Romeo:
Same way.

Dr. Daniel Correa:
And when you think of those things in memories, is it like you took a picture or a video of those things in the past and you remember all the parts of it?

Abbey Romeo:
Yeah.

Dr. Daniel Correa:
Do you feel like you also feel the emotions that you had at the time?

Abbey Romeo:
Yes, I do sometimes.

Christine Romeo:
Tell them how you don't use your feeling words.

Abbey Romeo:
I don't use my feeling words, but I correct myself.

Christine Romeo:
Can you start at the beginning and tell him that?

Abbey Romeo:
For example, whenever I'd see a place I don't like, I'd go, "Oh, that's The Clubhouse."

Christine Romeo:
And what was The Clubhouse?

Abbey Romeo:
Because clubhouse was a program I went to at ages four and five and there were kids with bad behavior problems. So whenever I'd see a place I don't like, instead of using my saying, "I feel scared, I feel sad, I feel shocked," I'd go, "That's The Clubhouse."

Dr. Daniel Correa:
So you connect sometimes your feelings and your memories?

Abbey Romeo:
Yeah. That's why my mom drew something called the visual dictionary.

Christine Romeo:
I did do that. So what I did was you can have your memories. I don't want to change the way her mind works, honor it, but if we could add a layer, then she could be understood. So we took the memory of this place called The Clubhouse and I drew The Clubhouse with crayons and then I put the feeling words connected to it, "I'm scared, I'm sad, and I'm shocked." So I put him on the wall and it was sort of hanging up there as a visual dictionary to show her memory, but just maybe add the feeling word. So I'm not trying to negate or change the way her mind works. I'm just trying to see if we can add a step.

Dr. Daniel Correa:
Christine, then what are some examples of how you've seen her use the categories and memories to be brave and take on new things?

Christine Romeo:
So that's a great question because it's all about honoring how her mind works and then giving her, I call it, be the bridge. It's like there's people that will criticize and say, "Don't change her. An autistic person is this way." But they already have the ability to chat and interact and have a job and drive a car. So you really can't put that on someone that doesn't have it. I believe everyone deserves a shot, so we honor how our mind works, and then I try to creatively create a bridge to let her walk over it. Look, if she doesn't want to walk over that bridge, that's on her. At least I know I did my part. And by the way, I did the exact same thing for her typical brother who's two years younger than she.
I built a lot of bridges for him too. He's a typical kid and if he walked over it, great, but if he didn't, that's on him. So that's my philosophy. We have something called self-talk and self-talk is using different modalities, mottos, ideas that are often generated by her. We write them down on a piece of paper, so they're now visual and then we try to present those with her to try new things. I love the reference to Elsa. We just came back from my mother's funeral this past weekend and we created a do's and don'ts list of what you say and how you behave. She's never seen a casket before. That's a lot for anyone.
A lot of emotions and then high emotions can lead to other things. So we talked about some of the dysregulation as Elsa's icy powers and that she was doing it for good. Elsa didn't go away, because she was mean. She did it because she loved people. So we try to get into the minutia of the story to flip it so that it's a good thing and not a bad thing. The Ariel motto still lives on. By the way, when she first said that to me, I just welled up and couldn't believe what a sophisticated and amazing analogy that was.
I thought, "Wow, there's just so much in this girl's mind." I've got it. That helped me with patience and understanding and wanting to be the best bridge builder I could be. But today, and a lot of people on my TikTok don't understand that the mermaid reference is actually negative because it's, "I don't fit in. I'm different." So she still loves mermaids. So we say you can love mermaids, but you are not a mermaid. You're a human. And people don't swim underwater and have gills, so you could be one or the other.
I have to get technical with her. So I said, "We can love mermaids. Let's still collect mermaids. Let's honor how beautiful mermaids are. But if you say you're a mermaid, what do you really tell yourself?" And she'll look right at me to say, "I don't fit in." And then I say, "Do you fit in?" She says, "Yes." And I'm like, "Aren't you kind of a rockstar?" Her favorite thing is to say that I have haters on TikTok and she only has fans.

Dr. Daniel Correa:
That's great. Now, I mean really you're telling us both these communication skills and abilities to relate to Abby, but you shared also how you've used this also with Benjamin and they really are all just excellent approaches and skills for all of us to use in all of our relationships. Not just parenting. But it's not specific it seems to Abby or autism, but really ways that we can connect with each other.
I had one more question for you, Abby. I saw that you wrote some songs and you recorded them and put them on YouTube. I really enjoyed listening to them. I wanted to know why did you pick those songs to share?

Abbey Romeo:
Because of the way my mind work. One song is called Girl Inside and it feels like it's about how... It feels like someone's living inside me. There's one part of me that's autistic and one part of me that's typical.

Dr. Daniel Correa:
And anything about the other songs that made you decide to share those?

Abbey Romeo:
Water slide about how I used to be terrified of water and I didn't like being afraid of water because I've always wanted to be a mermaid and I didn't want to be like a human.

Christine Romeo:
But there's jealousy in there too, right?

Abbey Romeo:
Yeah. Water slides like I was living in a world alone because I could see all the other kids swimming and it made me very jealous.

Christine Romeo:
And then you went to a waterpark

Abbey Romeo:
And then it called Hurricane Harbor, and that made me feel like I fit in.

Christine Romeo:
She came home one day and she just said, "I have no more jealousy because I went down the big slide like everyone else." She finally went and went down the slide and was participating. And so that brought that song to life because she had just said it just took away all my jealousy because she felt part of the group. Abby actually sang really before she spoke, she used singing as a language because she could memorize songs and they had a beginning, middle, and end, and they were exact with notes and they were predictable. See, a song is predictable and language is not.

Dr. Daniel Correa:
So I wanted to just go back to one other question I had. While some people are just now starting to understand more about autism, many people use this term or maybe they've only heard the term spectrum but don't really understand it and what it means in this situation. How do you explain the concept of the spectrum with autism disorders to others?

Christine Romeo:
It comes from my experience. So for me, I've got a kid that was diagnosed at two. I mean, 18 months, there were issues. She couldn't sleep. I was asking the doctor, what's happening? Why is this happening? Why is that happening? So for me, autism impact my life in a very life-changing way. It was in one career that I had to quit. The career I really wanted, I just stopped doing because I had to focus. So for me, it was that much of a bang. But in today's world, ever since 2013, which is I believe when the American Psychiatry Association changed the diagnostic criteria and expanded it to include a lot of other neuro differences, now I feel like a lot of people who identify as autistic show zero signs of being autistic.
Look at us autistic people. We can do anything. And that's true for those people. But then these other people that have autism struggled to have a conversation. And as you can see with Abby, she still struggles with give and take, but what she's doing today is a miracle from where we were even six years ago. So it's hard because it's so vast. For me, I say life-changing. I'm always saying 20 years of speech, 15 years of occupational therapy. She's in special ed her whole life. She had to have an aide until she was like 10 years old just to navigate anything.
She is still in a therapy today that is a combination of very targeted therapy to help her with life skills, how to do emails, how to walk to the corner and order a sandwich in all the steps that go with it. So we are constantly still intervening. What my hope is, as I said before, was that the Neurodiverse community exists and it's real.
For example, I went to amusement park in Branson, Missouri for my birthday this year with Abby, and the guy that was running one of the rides was a hundred percent neurodiverse. Would I call him autistic? I don't know. Probably not because he was doing such more advanced skills than Abby could do. You see what I mean? I have extreme compassion for that guy. I sit and I talk with him. I ask him his name and I respectfully get his story, and I just engage with him because I think that's what makes me the saddest. There's a lot of social isolation with people that are different. This is a fast world and if you can't keep up with it, you can fall off the wagon, you can fall to the side. It's not fair because there's so much genius and interest and a valid person right there. So I try to engage with everybody.

Dr. Daniel Correa:
I think all of us in the community who are trying to learn more about other people's experiences, really truly appreciate everything that you are sharing about yours and Abby's own experience with this and how you've been able to at least adapt how you listen and learn and love for your family. Thank you so much, Christine.

Christine Romeo:
Thank you so much for having us. We really appreciate it.

Dr. Daniel Correa:
Can't get enough of the Brain & Life Podcast? Keep the conversation going on social media when you follow @NeuroDrCorrea and @BrainandLifeMag or visit brainandlife.org.
Welcome back to the Brain & Life Podcast. It was really great to get a chance to speak with Abby and Christine. And now we're here with our medical expert, Dr. Wilfreda Lindsey, or otherwise known as Freda. Freda is a neurologist in Baltimore at the Kennedy Krieger Institute and also an assistant professor in neurology at Johns Hopkins University. She specializes in a variety of conditions and how they impact a child's development. She sees patients in a specialized clinics for a condition called Angelman Syndrome, Fragile X, and also how sickle cell affects a child's development.
She's very dedicated to helping families support their children as they transition into adulthood with other neurologic disorders. Thank you so much, Freda, for joining us here today.

Dr. Wilfreda Lindsey:
Thank you for having me.

Dr. Daniel Correa:
I wanted to build off of some of the discussion that we had with Christine. There are so many different terms to include Asperger's, autism, autism spectrum disorders. There's names for all these different conditions, and then on top of that, some of the same challenges and symptoms can be associated with other neurologic disorders that affect development. Can you help our listeners understand the meaning and differences with these terms?

Dr. Wilfreda Lindsey:
I do think that it was a lot more tricky in the past. It's gone through a few iterations and the diagnostic statistical manual four, which helps give us our diagnoses for these things. There were five different disorders that now fall under the autism spectrum disorder. They were not significantly different and it was hard to have consistency with those different disorders. So in 2013 when the DSM-5 came out, the decision was to combine them under autism spectrum disorder doing away with all of these differences so that we can just have two main criteria.
So the criteria were having persistent impairments and reciprocal social communication and social interaction and then having restricted repetitive patterns of behavior. So now there's just the spectrum and they all fall within that. One thing the DSM-5 did do is give different levels. So there's levels one, two, and three with one being the mildest, then three being the most severe, and those levels just correspond to how much help somebody might need as they go from childhood to adulthood, how much support they might need.

Dr. Daniel Correa:
Now as an adult neurologist, I don't see as many kids. I see them when epilepsy affects their lives as a part of our group at my center, but I'm not as involved now in their developmental cycle and evaluations. But when I was training at that time, we still were juggling all the different terms. And sometimes there were these situations that a child really needed services and we weren't really sure that they fit into one of the terms that gave them all the extra services we were trying to decide how to piece that together. Has that changed and improved now with the levels of autism spectrum disorders?

Dr. Wilfreda Lindsey:
I do think that that has been a major change. For instance, one of those five disorders was called pervasive developmental disorder not otherwise specified. And it felt under one of the autistic disorders, but because the name autism wasn't in it, they did not qualify for the services that they definitely could have benefited from. And so now with them all being autism spectrum disorders, it's great because they all can get some level of services. But it uses this level one, two, and three to determine how much a person might need in terms of resources.
The problem with that is that the levels are based on language impairment or not, and also really disruptive behaviors or how functional a person is. So if their behaviors are disruptive but can be redirected, they might fall a little bit under level one. So there is some freedom in how physicians choose to diagnose and which level you choose, but basically anyone who would need lots of services, we give a level three, two.

Dr. Daniel Correa:
And as you mentioned in these different levels, there's different behavioral changes and language impacts between the varying conditions that are associated with these different diagnoses. We see children with many different abilities and communication methods. Why is that?

Dr. Wilfreda Lindsey:
Because there are lots of different reasons for autism. We do know that there are some genes that are connected to autism and we know that there are some people who have isolated autism without any other things, like you said, epilepsy or intellectual disability. So the reason why it varies is because the etiology is different and we're still working on finding as many reasons as we can, but there are lots of different reasons to have autism. And so depending on what condition is connected to, it really tells you how much services you might need.

Dr. Daniel Correa:
I think this is that challenge where we have certain diagnoses in neurology that they themselves are a diagnosis, but that diagnosis is a symptom of something else. And as you described that etiology and we see that with epilepsy and autism falls in that even though it's a specified diagnosis, we're really diagnosing the symptom and we have to take a look back and see if we can identify a cause.

Dr. Wilfreda Lindsey:
For sure.

Dr. Daniel Correa:
What are some of the various functional and cognitive challenges that may not always be visible to others?

Dr. Wilfreda Lindsey:
This kind of hits on what you just said about how it can be so variable because it is a diagnosis itself, but there are lots of different things that can come with autism. The one thing that is true for everybody with autism is that there is an impairment in the way that they communicate socially, but then there are levels to that. I do think that a lot of times people look at a diagnosis and see it as a one size fits all, but different patients have different cognitive and adaptive abilities and different strengths. And being socially impaired does not necessarily mean that you don't have expressive language.
It doesn't necessarily mean that you won't have friends or intimate connections, it just means that you might have a difference in the way you experience the outside world. And so a lot of times when people ask me blanket questions like that, I always say if you have someone who's able to communicate with them, then the best thing to do is ask that person how they experience the world. I think when people look at a diagnosis and say, "Tell me what this person might look like," it's a little bit hard. But things we can say is that there might be repetitive behaviors and restricted interest and there'll be social impairments. The way to really figure out how to handle and deal with that one person is to talk to that person.

Dr. Daniel Correa:
I think a great rule for interacting with anyone from a different background or from a different perspective. This just happens to be a situation that relates to social engagement for the children with a developmental disorder. As your counseling and helping parents and caregivers and their child is getting older, how do you suggest that they discuss with the child their diagnosis and help them starting to navigate socially, the neurotypical world around them?

Dr. Wilfreda Lindsey:
I think it's very similar to developmental delay in a way where there's that early intervention. I think the earlier you start to discuss these things and to normalize them in your loved one's life, the more they're able to comprehend. Of course, it'll be at a different level whenever you bring it up. We'll start with a level that they can understand this is a diagnosis you have. It doesn't change who you are as a person. This is just a part of you. Other people have things that make film unique and different.
Starting by giving just the blanket definition and saying, because you have this, you might feel differently in the world or you might experience sensations or the way the world is differently from other people. You just start with the basics and you add a layer every time you communicate it again. I always think that it's important though to not make it a shameful conversation to not make it something that's negative of a burden or a burden, but just include it as something that's a part of the individual just like other people have things that are a part of them.
Their diagnosis does not make them who they are. That's just a special piece of them. I also think it's important to balance having individuals have groups where they are with people who have diagnoses similar to theirs or social communication, difficulty similar to theirs, but also engage with neurotypical peers for that modeling I think is very important, especially younger. And then as they get older, I hear a lot of families and teachers sometimes maybe not complain, but discuss behaviors that are not necessarily harmful or detrimental or disruptive, but are annoying or unsightly to someone else.
I always talk to my families and say, if this behavior is not harmful to anybody, then just allow it to happen. So doing things like normalizing their feelings and letting them know that you can interact and be yourself as long as you're not infringing on other people's rights are kind of the way I kind of go about them.

Dr. Daniel Correa:
When you're discussing with families the different treatment and therapy options with them for the functional and developmental challenges that their child may be having, what are the different varieties that are out there?

Dr. Wilfreda Lindsey:
Treatments fall into a few different categories. So you have behavioral, developmental, educational, pharmacological, psychological treatments, and then there's our CAMs, our complimentary and alternative methods. And so generally the first thing I recommend is behavioral treatments. And so a or applied behavioral analysis is a method that uses the patient's own motivations to improve wanted behaviors and then uses things that they find not as pleasurable to reduce some more disruptive and aggressive behaviors.
And so ABA is something that has been proven to be very effective. That's one of those methods that you were talking about in treatments that require a diagnosis of autism in order to be covered by insurance and starting early and often works with that. In terms of developmental and educational supports, I always say accommodations and resources at school. I think it's important for the school to know what's going on and to have the things that will help the child succeed.
In terms of pharmacological things, medications that help with disruptive and aggressive behaviors such as low dose, anti-psychotics are helpful. Anxiety is something we see a lot in this population. SSRIs are good for that, but then there's lots of ADHD comorbid with autism, and so stimulant medications work well for that. In terms of complimentary and alternative medications or methods right now, there are not any proven and there's no great evidence to say that any work. I will say that lots of people have tried antifungal medications and low sugar diets and the Mediterranean diet and things like that mostly aimed at aggressive behaviors, but there's no evidence. There is a website that I give parents sometimes that allow them to look at the evidence for all different types of treatments just so they don't have to take my word. They can look at the primary literature themselves.
The Association for Science and Autism Treatment, and it's asatonline.org. I really like it because it links the literature with every type of treatment to see where the evidence is and what we know works and what we don't have enough evidence for yet.

Dr. Daniel Correa:
Is there information about some of the other supportive therapies? Abby has done therapy with animals. There's frequently discussed equine therapies and other therapies and many families find a benefit from it. How do you discuss those with the families?

Dr. Wilfreda Lindsey:
Anecdotally, I have had lots of people tell me that they have had lots of benefit, especially from hippotherapy, so equine therapy, all art therapy, animal therapy, music therapy. And even some people have told me that they have benefit from vision therapy. But on the website that I talked about, they did say that there's no evidence and there's not enough studies done. When I talked to families about some of these therapies that aren't evidence-based, but they're seeing benefit from, I don't shy away from that. I think it's okay as long as they're seeing benefit.
There are some red flags for therapies that I always tell parents to look out for. If they have these high success rates that they're claiming and they have the one answer, but nobody else has it. If people are promising rapid effects, if the therapy is said to be effective for multiple syndromes, multiple disorders. And if the theory for the therapy is that this is something that we know to be true, even though evidence contradicts this. And if there are other proven treatments that we know have evidence and this treatment says that it doesn't align, I usually say that those are red flags.

Dr. Daniel Correa:
So it's a balance in a way of the benefits that the family is seeing. I'm sure also just the time and the financial costs with a lot of these things. But there's the financial barriers and limitations and access issues. So it all has to, I guess, fit in with the families, both priorities and resources.

Dr. Wilfreda Lindsey:
I always encourage them to bring things to me. I try not to be judgmental because you don't want to be a doctor that doesn't know what's going on with your patients, and I have learned if I'm judgmental or if I'm too harsh when it comes to a treatment that we might know has no evidence then that makes them lose trust in me. And it's not what I'm trying to do at all. We're a team and it's always best to talk with your doctor about anything you're thinking about.

Dr. Daniel Correa:
Now as the child is getting older into adulthood, how do you discuss some of the strategies and things that the family should be considering as they get graduated levels of autonomy and hoping to have some of their own self-determination? And for some of the children who are increasingly more functional and independent, maybe considering when is there an appropriate time to consider some level of independence in long-term or if needed long-term supportive care?

Dr. Wilfreda Lindsey:
The transition process is a very individualized thing because it has to be personalized to that individual who's transitioning. I think you mentioned that beautifully just now, that different people will have different functional and cognitive ability levels as they continue to get older. I think the first thing to do from a provider and a parent perspective is from the beginning include the individual in their own process. It means something different for everybody, but the easiest thing to do is ensure that a person who has the cognitive ability and can't express themselves knows their diagnosis. I think that's one of the first things to start out with.
I think it's simple, but we don't always talk about it, but having a name for it is really what can give them some autonomy. And then as they get older, I think that it's important to have an appropriate level of independence every step of the way. And that doesn't mean just when I start talking about your diagnosis, but for something small as potty training, some people will say, "Well, that's lower down on the list because we have other things going." But if you can get that together and they have their own sense of I can do this alone, then it gives them confidence.
When our patients have confidence, they want to be even more independent. I found that that's kind of my first step. Starting at 12 years old or so, I start to look into some readiness assessment questions. What does the parent know about the diagnoses and medications? What does the patient know and what are our plans and what do we want our future to look like? I started that early because this can be a financially stringent process. It's very time-consuming. And while healthcare transition is one piece of it, needing to know your medications, having a medical summary, what providers and specialists you need, what's your emergency care plans, what insurance will you need?
All of that is just one piece of it. The other pieces of transition that are important are thinking about the legal sides of it. Legal meaning financially and medically who will be making your decisions. And the housing and transportation part of it is important. And then education. Will my child be somebody who will be doing diploma track or certificate track? Will they be somebody who's going to go to college, get employment or will they need extra support?
All of those things I talk about for the first time at 12 and say, "You're not going to remember all of this right now, but this is just to give you insight into what you'll need to do." And then for every year annually, I'll kind of reassess that and make sure that for the patients that are capable of giving me these answers, they're also participating in it.

Dr. Daniel Correa:
What about for the individuals who maybe they're teenagers or getting even into their 20s and the reality is that parents or caregivers and family members also age, and at some point they have to start thinking about who is going to help my family member or child as I get older. How do you start that discussion? Are there key things that you bring up that they should be considering?

Dr. Wilfreda Lindsey:
So I said I talked about all of that at once at the 12-year-old visit, but as we start to get closer to 15, 16, I start to discuss the legal aspects of decision-making capacity, and also some of the financial things. So I ask, "Do you believe that your child is capable of understanding their medical diagnoses and also the consequences with any treatment or refusal of treatment they might have?" That's my beginning question because then we can start to go down the roads to whether or not we need complete coverage, which is guardianship, which says that someone will make all of my decisions for me, or whether we need power of attorney for just medical things or whether we need a supported decision-making kind of picture where I make a lot of my decisions, but a third party can help me.
So starting with that one question helps me understand what the family wants and can get them in contact with some of the resources that I use for transition. There are a lot of websites that have some good transition resources specifically for autism, but also just in general, there are some sites. So the gottransition.org website is a really good one to give people something to think about in terms of their checklist in the timeline. For individuals who have intellectual disability or have some cognitive impairments, I use the TRAQ, which is the Transition Readiness Assessment Questionnaire, and I let parents and patients come together to figure out which decision-making process would be good for them. And then there's an autism checklist too that's a comprehensive toolkit to help parents be able to figure out how to transition.

Dr. Daniel Correa:
Now, as we wrap up, what is one of the most important things you like families to try to keep in mind for their child or maybe even for themselves?

Dr. Wilfreda Lindsey:
The most important thing for all of my patients is that people see them as an individual, as not as a diagnosis. I think that sometimes that's easier for parents, of course, because they are the expert in their loved one. But I want to make sure that my patients see that as well. So the most important thing is to make sure that the patient is being their best selves and not to compare them to their diagnosis or to other people who have the same diagnosis as them.

Dr. Daniel Correa:
For one of your patients when they're having just a very difficult time managing with their condition or just their desire to interact more consistently with the neurotypical world, is there something you suggest to them to help them keep in their perspective?

Dr. Wilfreda Lindsey:
I actually kind of get personal. I don't know if this is the right answer, but I always tell people that I don't have autism, but I am shy. And so see it as just a trait of yours. Different people have differences in communication styles no matter what. And just because yours is one that has a name to it doesn't mean that that's not something you can't overcome or learn to use to your advantage. I always tell them that my shyness is something that helped me become a people watcher and become more observant, and so that I can be more relatable to people. I just ask them to take a piece of their personality that they love and work on that and use that to communicate truthfully.

Dr. Daniel Correa:
Well, Freda, thank you for sharing a piece of your knowledge and your space and voice and time with us and all of our listeners.

Dr. Wilfreda Lindsey:
Thank you.

Dr. Daniel 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 and Life Magazine for free at brainandlife.org. Don't forget about Brain and Life in Espanol.

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Dr. Daniel Correa:
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Dr. Daniel Correa:
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