Ep. 3 - LiveWell Talk On...Autism

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Ep. 3 - LiveWell Talk On...Autism

episode 3

Ep. 3 - LiveWell Talk On...Autism

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Host: Dr. Dustin Arnold, chief medical officer, UnityPoint Health - St. Luke's Hospital

Guest: Dr. Dinah Conti, pediatrician, UnityPoint Clinic Pediatrics

[music]

Dr. Arnold:

This is LiveWell Talk On... Autism. I'm Dr. Dustin Arnold, chief medical officer at UnityPoint Health - St. Luke's Hospital. You may commonly hear about autism and autism spectrum disorder in the news, at school, from a friend or a colleague. Today pediatrician, Dinah Conti, joins us to help understand autism. What is fact, what is fiction. Today we also delve into what new parents should watch for the importance of well checks through the age of five and more. Joining me to talk about this is Dr. Dinah Conti from UnityPoint Clinic Pediatrics. Thanks for taking the time to talk about this important subject today.

Dr. Conti:

Thank you.

Dr. Arnold:

You know I think autism, people really don't understand what it is. I will never forget this. I played college football and we're all hanging out watching TV and the movie was The Boy Who Could Fly. So we're watching this movie and one of the defensive ends is watching it with me and then a linebacker comes in the room and says 'Hey what's this movie about?' and I turn and I said 'oh it's about a boy that is autistic' and the defensive end goes 'I've been watching this movie for 45 minutes, I haven't seen him draw a damn thing.' And I was like, I'll never forget that you know. And I was like oh my gosh you know where do I start on that one. But so could you tell us what is autism, what is the spectrum disorder.

Dr. Conti:

So autism spectrum disorder is, includes several different diagnoses that we used to use in medicine Autism, Asperger, pervasive developmental disorder, and a few years ago it was decided that those should be all under one umbrella. They're on a spectrum. They're very similar to one another with some features that are unique to one or the other so we call it autism spectrum disorder now. A lot of people abbreviate that as just autism. But what we understood about autism when we were kids is a little bit different than what we know about autism now. So autism spectrum disorders are neurodevelopmental conditions, which means that something happens in the way that the brain develops that is unique and causes a set of symptoms that we'll see in an individual, kind of characteristics about the person. Autism spectrum disorders for children and for adults can be a little bit different because we change over time when we're born and then in those first few years and then in school and as adults. We gain knowledge, we filter through knowledge in our brains and we decide how we see ourselves and how we see the world and so children with autism can be very different than adults with autism. Adults with autism don't necessarily struggle with the same things that children would, but sometimes they do, sometimes they still struggle with those same things. So autism spectrum disorders are diagnosed you know in several different ways, but the most important is to see a qualified professional physician, nurse practitioner, a P.A., who is trained to identify the features of autism and to diagnose it. The features of autism will include three different categories and one is a language development, one is a social development and the other is sort of a self-awareness or how we relate to the world around us. So the language component of the diagnosis is unique to autism compared to other conditions when we think about speech disorder or language disorder we think well somebody just can't speak. But for people with autism that's not always the case. Some people with autism speak very well. They don't always speak in a way that makes sense to others. So you may have one child with an autism spectrum disorder who makes no words whatsoever not speaking not signing not writing. You may have another child with autism who speaks very well and makes full sentences, sometimes about the things you want to talk about and sometimes just about what their own what their own interests are. They tend to have very rigid specific interests. So one child may love movies and any conversation with them may involve only movies. You may ask other questions and try to get them to talk about something different but then their talk always comes back to the movies. They almost ignore the question in an attempt to still talk about the thing that they really love that they're obsessed with and it really is an obsession. For some they echo back what is said. There's a condition called Echolalia which is where if I speak to you and I say 'How are you today?' You may say back to me as a form of Echolalia 'How are you today?' rather than answering the question you say the same thing back to me. And if I answer the question you may reply the same. 'I'm fine, thank you.' 'I'm fine, thank you.'

Dr. Arnold:

Sometimes we see that in adults with dementia, they have an ingratiating personality to fill in the gaps.

Dr. Conti:

Yes.

Dr. Arnold:

It's the pleasantly demented. You know, you'll say, you can ask them 'what did you have for breakfast today.' And they'll say 'Oh the usual, it was great.' It's 6 p.m. you know they haven't even ate yet, you know."

Dr. Conti:

Right.

Dr. Arnold:

So that ingratiating personality kind of just to move things along. And so that's similar.

Dr. Conti:

It does sound similar. For individuals with autism they're oftentimes filling in the blanks with something that they think is socially appropriate. For instance, if I see a child in my office and every time I see them I say 'Hi, I'm Dr. Conti.' The first thing they say to me when they see me may be 'Hi, Dr. Conti' and I will 'Hello, how are you.' 'Hi, Dr. Conti.' 'Well it's good to see you.' Then I may move on to something else and then I go to do a physical exam and they may say 'check eyes?' 'Yes, I'm going to check your eyes today' and then I may say 'I'm going to check your mouth today' and they may say back 'check your mouth today.' There's a specific routine that some individuals with autism must follow. Again, it's related to that restricted interest. So they may follow the same routine every time they come to the office or every day when they get out of bed. They may follow the same routine. I go to the bathroom, I brush my teeth, I go eat breakfast, I watch this show. If you try to give breakfast before going to the bathroom, well the whole day may be messed up because the routine was off. Kind of like feeling off for the day. You know how you wake up on the wrong side of the bed so to speak.

Dr. Arnold: 

As a physician who cares for adults, that's interesting you know you often, the daughter in Florida will say 'well no mom doesn't have dementia, I talk to her every day.' But when you start to break it down, no you have the same conversation with her every day that you know they talk about the same. So then when she spends some time comes home at Christmas you know it's like 'wow mom is demented and really confused.' But you know she's been talking on the phone, she thinks it's something cute. That's really interesting. I see the similarities with that. I think we all had the childhood friend that was cordial and but just a little odd. Particularly my generation you know I don't know that the term autism was common in the 70s when I was in elementary school. But you had the buddy that was just a little off, but you know he was just him, you know a little awkward you know you include him everything and he was kind of fun to have around actually, you know.

Dr. Conti:

Of course.

Dr. Arnold:

So in retrospect, looking back you think I bet so-and-so had some sort of autistic disorder.

Dr. Conti:

Sure.

Dr. Arnold:

Do we know what causes it?

Dr. Conti:

Well there are several different things we think through years and years of study that it's actually a collection of different exposures that would cause that one as a genetic predisposition. There are quite a few different genes that are being identified as relating to the development of autism in an individual. There are several different studies going on in the U.S. but worldwide trying to investigate that further and see if there are specific ones that raise your risk more or if there are certain genetic conditions that may cause one person to have a more severe form of autism versus a milder part of the spectrum. There are environmental factors too. We know that individuals who are drug users are, during pregnancy, are more likely to have a child with a cognitive impairment or language impairment and sometimes an autism spectrum disorder as well. We think that there are also some prenatal and postnatal exposures like other medical conditions. Sometimes being a preemie can increase your risk as well, not because you're a preemie specifically, but because what happened to make you be born early and what kinds of things happen to you in the neonatal ICU. Any kind of injuries, brain injuries, those can contribute as well.

Dr. Arnold:

Can we get the vaccination controversy out of the way?

Dr. Conti:

Yeah we can put that issue to bed. Vaccines do not cause autism. I would say that the one guy in England who...

Dr. Arnold:

Yeah, he was disciplined for that.

Dr. Conti:

He was, he was kicked out of the British Medical Society for making a statement with no scientific basis and being paid to say it, which in medicine, that's not acceptable. It's not okay for me to give you my personal bias especially if somebody pays me to do it.

Dr. Arnold:

Correct.

Dr. Conti:

And me to pretend that that's real science, it's just not. I will say the one good thing that came out of him making that statement and then getting kicked out of the British Medical Society is that we have spent so many dollars on researching vaccines. They are cleaner now, they are better now than they ever were and very effective at preventing disease and study after study we can say, one more, check it off, it did not cause autism, it did not risk, increase someone's risk of autism.

Dr. Arnold:

Yeah, I think one of the greatest accomplishments of science, and mankind if you will, is vaccinations.

Dr. Conti:

Absolutely.

Dr. Arnold:

You know I just returned from a trip to Washington D.C. and to understand how they conquered yellow fever and it allowed the development of the capital, that the completion of the Panama Canal if Walter Reed wouldn't have came up that vaccine and it is quite simply disheartening when I read about increased cases of measles.

Dr. Conti:

Yep. Yep.

Dr. Arnold:

I remember in medical school, so in the late 80s, early 90s thinking, reading about measles, studying about measles, rubella. Thinking to myself, 'boy I'll never have to see this.'

Dr. Conti:

Right.

Dr. Arnold:

I'm going to see a case of smallpox. And so it is just absolutely disheartening...

Dr. Conti:

It is.

Dr. Arnold:

When I read about it and it's on the rise.

Dr. Conti:

It is.

Dr. Arnold:

What should parents look for? You know I reflecting on my own daughters, who are both taller than me and headed off to college. But I remember when they were younger. I have one that walked at like seven months and one that just expected to be carried everywhere till 15 months.

Dr. Conti:

Sure.

Dr. Arnold:

And you know we panicked on the second one that 'oh my gosh there's something wrong with her.' The pediatrician said you're crazy, Dustin. But so what if I'm a new parent, what should I, when should I say I need to call Dr. Conti.

Dr. Conti:

Right, right. As a new parent everything is confusing and exciting and nerve wracking all at once. Everything is scary. Every time you hear from a friend or a family member, 'well your child is six months old and mine was already doing blank, whatever it is, or yours is already doing that. That's so strange. They don't usually do this until they're older.' And it can be really hard to sort through all that feedback that you get from others because while it's well-intentioned it makes us a little scared for our own children. But one of the things that I encourage parents to do is anytime they have concerns they should they should let us know. What we see for most children is that the parents noticed something unique about them in the first year of life. Some unifying questions would be things like concerns about hearing or concerns about vision. They may not have said 'Oh I think my 9 month old has autism' but they may have thought that there are their 9 month old was deaf because their child didn't respond to what was said to them like they expected their child would or maybe didn't start to develop a mama and dada and squeal in delight when they see them and they may not have responded that way, a parent may have thought you know, 'Can she see? Because she doesn't seem to look at me, doesn't look at my face or doesn't look at the toys I show her.' I oftentimes will hear from parents that they feel like their child or their infant didn't really like being with them or didn't enjoy them because my kid plays by themselves all the time. He just wants to spin the wheels on his truck over and over. He doesn't want to show me the truck. He doesn't like when I play with the truck. He just wants to spin the wheels over and over, and that can be disheartening as a parent to feel like your child won't play with you. We hear how important it is to play and we know how important it is to play with our children, but what if our kids won't play with us? So that can sometimes be an early sign. Also, I mentioned earlier the speech that, speech patterns can be unique, but a common one we'll see for younger children with autism is lack of communication, lack of speech. They may grunt or lead a parent to the thing that they want, but they don't really point at the thing they want. They don't express themselves in an effective way. They're expressing themselves, we just don't always know how to interpret it. Also, younger children with autism spectrum disorders oftentimes don't respond to social cues. When I, and adults with autism can be the same, but when I approach a young child in my office the first thing I do is look them in the face and greet them by name or say hello. I say something fun and kind of funny to get them to pay attention to me. And sometimes when I walk in the room of a child with an autism spectrum disorder, even before they're diagnosed, I may comment that he doesn't even notice that I'm here. He hasn't picked up that I've entered the room and he should approach me or greet me. Of course plenty of kids are scared to come to the doctor and they cry and kick and scream and that's a typically developing child in so many ways, not to say that a child with autism wouldn't kick and cry and scream, they would, but that alone isn't a reason to be concerned about autism, but it's those finer, those smaller details that stand out.

Dr. Arnold:

So you've essentially emphasized the importance of well child visits.

Dr. Conti:

Absolutely.

Dr. Arnold:

Even though your baby might be normal and doing well and you need to bring them in to have that assessed.

Dr. Conti:

Absolutely. The most common time for children to show those more distinctive features of autism spectrum disorders are between the ages of one and two. Not all kids are going to have a diagnosis during that period of time, but that's usually when our evaluations start. Most kids who are diagnosed with an autism spectrum disorder are diagnosed by age four. Those kids who we used to call having Asperger, we used to say that they had Asperger, oftentimes have a later diagnosis age and may be diagnosed as late as five or six. Now some people don't achieve their diagnosis until they're older, even adults will find that you know why I'm so quirky. You know you mentioned that friend...

Dr. Arnold:

Yeah, yeah. Absolutely.

Dr. Conti:

That you have that's just unique and always kind of gullible, you could trick him very easily because they didn't read between the lines very well, and there are some adults who find themselves unique in that way and they may seek care and say 'Look, why do I struggle with this' and may find that they have an autism spectrum disorder.

Dr. Arnold:

Very interesting. Is there a window of opportunity to treat? I mean I bring my child in one years of age, I'm concerned, you confirm that indeed they do have a developmental disorder of some ilk, of some type. What is the therapy, what happens next?

Dr. Conti:

Right. Well the first thing when I have a parent who expresses some concern, a developmental concern, speech, hearing, vision. Any of those things I want to investigate that further. So if a parent says my child doesn't speak very well. Well, my first question is 'Do you think they can hear?' Because if you can't hear, you're not going to speak.

Dr. Arnold:

Correct, yes.

Dr. Conti:

Or at least not very effectively. So a hearing test is very important, and oftentimes in further evaluation for an autism spectrum disorder the specialists that we may use will ask 'Did they have a hearing test and is it normal?' Because a child with vision impairment or hearing impairment won't express themselves the same way as a child who can hear well or see well and so we want to find those those differences very early. For a child who has a speech impairment or the parents have a speech concern. I want to investigate that further in my office, but also by seeking out a speech therapist, a speech pathologist, to tell me OK is this kid actually within this typically developing range or does this child actually struggle with language development and if they do let's let's get him some therapy for that let's go ahead and start helping them with those challenges because then they can overcome better. I think one of the things that is hard for me as a pediatrician though in advising parents is that even with early intervention, that's what we call it when we start speech therapy or some other therapies at a younger age, even with early intervention some children don't make great strides. It's just not how they're made. It's not how their brains are made, but if their brains are designed to make good speech then we can help them make good speech.

Dr. Arnold:

Hence the term spectrum.

Dr. Conti:

Exactly. Exactly.

Dr. Arnold:

Makes sense.

Dr. Conti:

Exactly. And some are going to express themselves more visually with picture cards or, and there are all sorts of electronic devices and apps for your iPads now that you can choose a photo board that your child can touch and express themselves that way. Sign language is a great way for kids to express themselves, not just your typically developing, because we everybody loves baby signs, but also for kids on the autism spectrum it's very helpful for them to express themselves physically.

Dr. Arnold:

Do you think that the diagnosis is the incidence or the rate of autism increasing in the general population or are we just labeling something that perhaps has always been there.

Dr. Conti:

It's a little bit of both.

Dr. Arnold:

A little bit of both.

Dr. Conti:

Yep. The CDC reports that one in 59 children, based on data from a couple of years ago, one in 59 children have an autism spectrum disorder of some sort. It is more common in boys and we are discovering that there are those different factors that can lead to an autism spectrum disorder diagnosis that I mentioned earlier. Things like a genetic condition or prematurity. Conditions like down syndrome and fragile X, tuberous sclerosis. Those are different conditions that children are born with that are also associated with autism spectrum disorders. There are greater risk, if you have fragile X, you're at a greater risk for developing an autism spectrum disorder. Has to do with how the brain is made. What we find is that over time we've made such good advances in medicine that a lot of people carry an infant to term or even a premature infant when you deliver, we can do so much to help that baby to survive and thrive, but what we find is that that increases our risk for having children and adults with genetic conditions which is fine. That's wonderful, we want diversity.

Dr. Arnold:

Right, right.

Dr. Conti:

Every kid is awesome, but we do see that there are some increases in different conditions because people are living, you know infants are living that 50 to 100 years ago would not have. An infant with down syndrome would not have survived if they had a heart defect 50 years ago or 100 years ago. So if that child didn't survive they never developed autism. So it's that kind of, it's that way of thinking that is leading some of the scientists to kind of study those avenues to see what why is it that it's more frequent. We are seeing that children in certain populations are being evaluated sooner than they used to be. Specifically in the African-American communities and the Hispanic communities where those individuals, the families who are African-American or Hispanic may not seek medical care for their children because of a stigma or Hispanic family or a refugee family, an immigrant may not seek medical care for their children because they're afraid they're going to be turned in or turned away. Individuals who don't speak English as their native language oftentimes will struggle with seeking medical care in the U.S. and being expected to express themselves in English, they may not be able to express what they're seeing about their child very well. And so their questions get missed, their child gets left behind and left out of those the left out of that medical diagnosis.

Dr. Arnold:

You know you're illustrating a point that has been eye opening to some of us on the medical staff that professional translator services, which we have here at St. Luke's, is so important.

Dr. Conti:

Absolutely.

Dr. Arnold:

You know that is, that has been something that sometimes I think okay I'm communicating well with the family, bring in the professional translator and I realize whoa, I was way off.

Dr. Conti:

Right. Happens to me too.

Dr. Arnold:

And they're a phone call away, they're great.

Dr. Conti:

Absolutely. Well and we even have a Spanish interpreter on staff at St. Luke's now.

Dr. Arnold:

Yeah.

Dr. Conti:

That's great.

Dr. Arnold:

Couple of fun questions close out.

Dr. Conti:

Yeah.

Dr. Arnold:

So Dustin Hoffman Rain Man did he have autism?

Dr. Conti:

He did.

Dr. Arnold:

OK.

Dr. Conti:

That and you know Dustin Hoffman did such an amazing job as an actor in portraying someone with autism, but he portrayed one person with autism, and so many people throughout history since then have said 'Well I'm expecting to see a kid who's Rain Man and well that's not what the spectrum is. He's one person with autism. There's so many other people with autism who are nothing like him.

Dr. Arnold:

Right now everybody under 40 is googling Dustin Hoffman Rain Man.

Dr. Conti:

They've never met him. I don't know the movie. Oh wait, you have to mention Tom Cruise. You have to say Tom Cruise.

Dr. Arnold:

Oh yeah, can't leave out Tom. He kept his shirt on during that movie.

Dr. Conti:

He did.

Dr. Arnold:

Before we leave, why do you love being a pediatrician?

Dr. Conti:

Oh gosh, there's so many different things, but the number one being getting to know families and being a part of their lives. You know I advise on good healthy practices, but I don't know everything and I learn a lot from just talking with different families and use what I've learned in future family interactions. I may learn a discipline tactic in one family or a way to get your kid to eat foods they've never tried before from another and I use those and I find that to be so fascinating and so exciting. And the truth is I just love to play with kids.

Dr. Arnold:

Well that is awesome, and in full disclosure my daughters went to your partners in pediatric group, and your fine group of physicians. I think the pediatricians are always held in a little bit higher esteem just because of the work that you do.

Dr. Conti:

Well we love it. And that's one of the things that I really like about our group of pediatricians at UnityPoint Clinics is I have worked closely with every single person in our team and everybody loves the work that they do. Everybody loves the families and the kids.

Dr. Arnold:

You can feel, you truly can feel it when you go to your clinic. Well this has been really great information, not only professionally but personally for me that allows me to be a little more knowledgeable something that as a physician I'm asked these questions and I will answer more confidently in the future. Thanks for taking thr time. I know you're busy. I know it is a busy practice and I am grateful for that. Again this was Dr. Dinah Conti and really great information from UnityPoint Clinic Pediatrics. If you have a topic you'd like to suggest for our LiveWell Talk On... podcast shoot us an email at stlukescr@unitypoint.org. We encourage you to tell your family, friends and neighbors about our podcast. Until next time, be well.