- [Announcer] Live from your Public Media Studios, WVIA presents "Keystone Edition Health," a public affairs program that goes beyond the headlines to address issues in Northeastern and Central Pennsylvania.

This is "Keystone Edition Health."

And now moderator, Tonyehn Verkitus.

- Good evening and welcome to "Keystone Edition Health."

I'm Tonyehn Verkitus.

Thank you for joining us tonight.

Children with Autism Spectrum Disorder or ASD face distinct challenges in navigating the world around them.

Autism is not a singular experience, but rather a spectrum, encompassing a wide range of strengths, abilities, and needs.

Understanding and supporting children with autism requires patience, empathy, and commitment to recognizing and embracing their individuality.

We will be discussing all of this with professionals who share information on their expertise, organizations, and how they're supporting these children.

But first WVIA's Sarah Scinto has more.

- [Sarah] Children with autism spectrum disorder or ASD often experience unique challenges in social interaction, communication, and behavior.

Each child with autism is different with varying strengths and difficulties.

Routine and predictability can be crucial for many children with autism as unexpected changes may cause distress.

According to the National Survey of Children's Health, autism can be reliably diagnosed by a specialist by age two, but the average age of autism diagnosis in the US is five years old.

Some may struggle with verbal communication and may prefer nonverbal forms of expression.

While others may have exceptional abilities in specific areas such as mathematics or music.

With support and specialized education, children with autism can thrive and reach their full potential contributing positively to their communities and society.

For "Keystone Edition Health, I'm Sarah Scinto, WVIA News.

(bright music) - Joining us tonight, we have Lindsey Jordan, speech language pathologist and autism spectrum disorder clinical specialist with Lehigh Valley Health Network.

Barbara Schwartz-Bechet, dean of the College of Health Sciences and Education at Misericordia University.

And Thomas D. Challman Medical Director with Geisinger Autism and Developmental Medicine Institute.

Thank you, all for joining us.

I'll start with you, Lindsey, actually.

Can you tell us a little bit about your job?

What age children are you working with and also the department at Lehigh Valley Health Network?

- Sure.

Yeah, so I am a speech therapist, so I work primarily with pediatric patients, meaning anywhere from birth to 18 years of age.

So what that kind of entails is just, you know, seeing kids come in, seeing if they have this communication disorder, which could be, you know, in a plethora of areas and seeing if how that's impacting their everyday life, whether that's school at home, just in their community, and how can we better make that more effective and functional for them.

- And Thomas, at the hospital, how many kids do you see per year do you think?

And what types of services does your department provide?

- So I'm the medical director of the Geisinger Autism and Developmental Medicine Institute.

Our main center is located in Lewisburg, but we do have a secondary site in 44 and we do outreach to a couple other locations in Pennsylvania.

So right now we, we do see quite a few kids in our clinic.

We see several thousand patients per year and we follow kids from toddlerhood all the way up through into adulthood.

Right now, as in a lot of places, we're getting many referrals and we get approximately 70 new referrals per week for new evaluations at our clinic.

- And about what percentage of children will you say are being diagnosed with ASD?

- Well, the numbers have shifted through the years.

So if you go back into the 1980s and 1990s, it was estimated that perhaps one in 2,000 children had autism spectrum disorder.

And since then, because of a variety of reasons, including better diagnosis, more attention to the issues, and greater awareness in the public, that number has changed quite a bit.

And so really right now, it's estimated that even as high as about one in 40 children falls within this category.

It doesn't mean that there's necessarily an increase in the actual number that's in the population, but we are doing a lot better at recognizing and intervening in this group.

- And Barbara, you're working with children once they get to college, which is a completely different experience.

They've left home, they've had all this support and care.

What types of programs does the university offer?

- We have two types of programs at this point, one is for individuals who can actually get their degree completed and there are quite a number of individuals with autism who have the competency to do that.

And that is called our ALL Program.

The other program which we just started, I'm very proud of is called the Integrated Studies Program.

And it is a two-year certificate program where individuals with more moderate autism or neurodiverse needs who would not necessarily be able to get a degree can come to our program where they audit courses that they're interested in.

We provide them with academics, we provide them with socialization, and we provide them with internships so they can find a nice pathway.

It's a nice transition point for the students and they're able then to go on into the community and lead productive lives.

- And Thomas, before we move on, I feel it's important to talk a little bit about the difference between autism and Down syndrome, if you don't mind, just because I think people often get them conflated.

- So autism is a behaviorally-defined entity.

So we look for certain characteristics and it's a recognizable pattern of development and behavioral functioning.

Down syndrome is a particular kind of genetic condition where individuals have an extra chromosome 21.

Now the two are different.

So we see children with autism and we are very interested in looking at underlying genetic factors that might be contributing to that condition in them, so we do genetic testing and so forth on children.

And there are many, many hundreds and even more than 1,000 different genetic changes that might contribute to the development of these kinds of developmental issues.

So Down syndrome is based on the genetic change.

Now children with Down syndrome may or may not have autism, but autism is sort of what you see in terms of the development and the behavior.

And within that group, there's gonna be many, many different specific genetic differences in those kids.

- Okay.

In terms of the work you do, you're starting from birth as you said until 18 or so, how are you working with young babies as a speech pathologist?

- So a lot of it is what you would expect kind of for a baby like that babbling, those noises, that attention, that imitation from their caregiver, from those that are kind of interacting with them.

So you have these milestones that we're looking for and whether or not, again, are they delayed and maybe not at that point yet?

So we're kinda starting from the jump.

So we're starting just from even localizing the sound, looking at you know, the speaker, trying to get them to imitate you, any kind of syllables that they can do.

So really, that attention, that low level, what you would expect for a baby to kind of be producing, that's kind of what we're looking to achieve with them.

- Okay.

This is interesting to me because the intro did mention that you can't really diagnose before five I think they said, but maybe starting at two.

So what are you looking at in an infant that makes you think, okay, they should go to the speech pathologist?

- Yeah, exactly.

And so in the intro, they mentioned that it can be diagnosed as young as two and that's accurate.

If you're looking for the right things, you know, you can in many cases, make a diagnosis at that age, occasionally younger.

But when children are below the age of two, there's many, many other factors going on.

And it doesn't mean that you can't do intervention because the interventions cut across diagnostic boundaries, you know, so if a child has difficulty communicating for whatever reason, whether it's a language disorder or autism or an intellectual disability, then the interventions that Lindsey provides can be helpful.

Now in the intro it mentioned, it's not the average age of diagnosis is five.

That's more reflection of the failure of our system in identifying kids.

And that varies a lot by geography and the resources that people have in their areas.

So the goal is to take that 5-year-old and level and try to make it younger.

And that's what a lot of the work that all of us do is geared toward.

- Now Barbara, if someone has a child who is autistic and they're interested in that certificate program because honestly I had no idea anything like that existed, is this something that the high schools would know about?

How do they find out how they can enroll their children?

And as we've said, this is a spectrum.

So where may children have to be on the spectrum in order to participate in the program?

- They can be on the spectrum.

It doesn't matter where, we would have a program at Misericordia for them.

And it's a great point that you make.

It is not known very well around the area or many parts of the country that these programs exist.

And ours is ACTP, which means it's a comprehensive transition program and it is acknowledged by the federal government, the US Department of Education, which allows the students to complete a FAFSA with their family of course, and be eligible for financial support, which is also very difficult for families to come by these days.

For them to know about it, we are getting the word out, we're trying to get the word out to the local community.

We are meeting with guidance counselors, but we're trying to have a more broader spectrum of knowledge put out there.

So we work with the ACE hubs as well and they're aware of our program too.

And we are out at all of our events shouting to those because we do know that it is a problem to get the word out and we wanna make sure that more people know about it.

And my esteemed colleagues here, we were talking prior to coming on board about how children and families know where they can get services.

They have more of that pathway coming from their school systems and they know where to ask and not so much as children age out and become young adults, it becomes a bit more difficult.

We also have a program for young adults called Tabletop Games and we have two groups.

One for young adults and one for adults, which is like Dungeons and Dragons, - It really is important what's being done at Misericordia and other universities because you know, there's been a lot of attention in the younger age group.

So identification and some of the early intervention and so forth.

But the children grow up, right?

And they need to have things available to them as they cross into adulthood and there hasn't been tremendous amount of resources.

So it's really exciting that the universities in the area are getting on board with providing some of these things because access to those for the families and for the young adults can can be really difficult.

- And like, when did you notice this change?

And I'm asking this because I feel like I learned recently that children who are on the spectrum can stay, tell me if I'm wrong, stay in the public school system until they're 20, 21?

- It's actually now Pennsylvania, 22.

- Oh, okay.

- And so there are a decent amount of resources for the younger and the school aged kids but then this adult transition can be challenging where children, families have had a lot of supports and interventions along the way and then there is a gap when you make the transition to adulthood.

And that's where a lot of these programs are trying to fill.

- [Barbara] And the what you said as well, Tom, is that they go to 22, but we can have those same children who are in 18 years old and their school system would still be following them and they could still come to our program.

- Okay.

And so you're working with these children from birth until they're going to college or high school.

Do you still work with kids after they get to college and how are parents supporting this process along the way?

- So yeah, so we, at Lehigh Valley Hazleton, we are able to see patients in rehab for speech therapy of all ages.

So we do see patients that are over the age of 18 and you know, maybe in that age where they're kind of transitioning into these programs.

And sometimes, it's just a little bit more appropriate to maybe see them on the pediatric side 'cause it's just more of the resources that we have over there.

It's just more accommodating.

But the parents, again, I think that what we're seeing is really more of this progression of just almost like a lack of knowledge again of the resources that are out there for them.

So, you know, it's kind of like those milestones again.

Like my kid is this age, they're not, you know, talking yet.

What do I do?

Okay, now my kid's in school, what should I do?

Okay now my kid is about going to, you know, go ahead and get into high school or going to college.

So what do I do from that point on?

So we really do see them at those mile markers trying to give them that knowledge and those resources that they need.

- And go ahead.

- I was gonna say, I mean, really, the heroes and all this are the parents and the caregivers.

The process is confusing from the get-go and there aren't many, and again, like I said before, I mean there's been a little bit of a failure of our system, our healthcare system in particular in the care of individuals with disabilities.

And I mean, dare I say neglectful, you know, at times.

We're trying to re you know, fix that with some of the things that are being done now.

But parents, you know, they need support to try to figure out where they can get help.

It's not always obvious.

And so from the beginning all the way into adulthood, they do need to, you know, have places to go where people are knowledgeable about what the resources are.

- And I would piggyback on that too and say that the first thing that all of us practice is respect for the parents as you indicated.

Because I think a lot of the time the parents feel that they're being spoken down to or told but they're not really included in the conversations.

And I know that's something we're all trying to ensure that they feel as they're part of their child's development and moving forward.

- And I was actually gonna ask you this question because if you have a child who's going to university in either program, they're probably going to need the support of the family.

Whereas your regular college student, you want the parents to step back.

- That's very true.

In this program, we help the parents to understand that we are going to be providing assistance to them because we have academic coaches that go with their student a class to make sure that they're understanding everything, they learn how to be appropriate and raise their hand or no, they don't have to ask to go to the bathroom, they can just go to the bathroom like any other student, we have them going to games so they're paired up with people.

But we don't want the parents themselves to be engaged in everyday activities but to tell them what they've done after the day.

So we do provide them with that support as well.

- Okay.

Recently, WVIA's Tim Novotney met with Esther Brennan who works for the Autism Resource Center.

She discusses how her organization helps enhance the lives of those with disabilities by giving them support and services.

(gentle music) - My name is Esther Brennan, I'm a special education teacher in the Williamsport Area School District and I'm also the Autism Resource Center hub coordinator.

(gentle music) This all started out as a grant funded project that went on for about five years.

Now Hope is continuing to provide the services and elongate our mission to provide opportunities for families.

Autism Research Center, this is Esther.

So a typical day for me in the center is first of all providing resources for families that come to me for help.

We provide childcare and dinner, which is a huge plus for these families.

Yoga classes, opportunities for parents to get their children out there doing different things.

What inspired me was my work in the public school system and I wanted to do more.

I was approached by a parent of one of my students who asked me if I'd be interested in helping with the Autism Resource Center.

And that allowed me to help families get the resources that they need.

So this is a Hoberman Sphere.

And we use it with students to practice deep breathing.

(excited music) Take a deep breath.

Slowly exhale.

(excited music) One of the biggest programs that is ever-evolving is a collaboration with a nature therapist.

And that has been an amazing opportunity where their sensory needs can be fulfilled in a nature setting, parents can talk.

And that was one of the most powerful things that I've witnessed is allowing the parents an opportunity to decompress and talk to each other and be there for each other.

(excited music) Some of my most rewarding experiences working at this center is connecting individually with young adults with autism and helping them self-regulate and providing something for the parents to feel like they're not alone.

So if you're a family that's struggling or you're not sure where to turn, you can contact Hope.

There's a website where you can find my phone number and my email.

There's also a Facebook page for the parent support group.

The acronym is SASSY.

It's a whole community of support.

I absolutely love what I do.

I'm doing this because this is my passion.

I see what the families are going through and I wanna help them.

- Lindsey, I'd actually like to talk about what speech therapy actually looks like.

What types of tools are you using?

If someone's nonverbal, how do you help them learn to communicate?

- Yeah, so when they come in for the evaluation, we kinda get like where they're at, where are they currently working.

And the end goal is again like, how can we make them be functional?

So we use different modes.

So one of them being verbal communication, but like as you said, we know that not every kid is there right away or going to get there.

So what other ways can we do?

So sign language is a really big one.

So sometimes, kids come in and they know a few signs.

Sometimes, we pair that along with also an augmented communication.

So again, that's just an alternative way for kids what would look like a device, you know?

And maybe again, using all three of them at the same time.

So it's kind of neat to see what tool is best going to work as far as in their therapy to kind of help aid them in that communication.

- And let's say kids have created bad communication skills, what might those look like?

And then how do you improve that communication?

- Sure.

So a lot of that time is like what you would see as like a behavior and almost like that bad communication is coming out as some sort of a behavior.

So we sometimes to almost start there, right?

Like teaching those ways that we go ahead and act in a setting or how we can get something that we want but in a more appropriate way.

So I think that sometimes we're starting there, almost erasing those bad behaviors to start with that more way of functionally communicating in a way that is more socially appropriate and things that will be accepted more.

- That's really an important point 'cause we see children many times that have some kind of behavioral concern.

And when you kind of drill down into it, what it really is, is a difficulty with communication and children that have trouble communicating, that frustration is gonna come out different ways.

So that's not something that a medicine can or should be used for.

It should be trying to improve the communication as an initial step and using all the modalities.

And in our clinic, we have several extremely well-trained speech pathologists that do augmentative communication, trying to find other ways that kids can communicate using sign, pictures, devices.

- I would say too that both the behavioral aspect of it, since I am a behaviorist as well, as a dean is really true that they don't know that how they're communicating isn't acceptable to the norm.

And that is their way to communicate, that is their behavior.

And they've been reinforced to communicate along those lines and now, they are learning from the speech pathologists and the specialists how to appropriately communicate.

So they have to be reinforced for the appropriate behaviors of communication.

- And let's talk a little bit about diagnosis, right?

So A, what are you looking for as a physician when a child comes to you, but also as a parent, I may have a 12-month-old, might there be a particular sign that I should be aware of that might potentially be- - Sure.

At that young age, the main things that we encourage people to look for would be things like fundamental, what we call joint attention skills.

So the child as the infant make eye contact, respond to their name.

When a parent points does the young child look toward where the parent is pointing to.

When you pair that along with regular language milestones, what kind of words they're saying, those are the best early indicators that something might be amiss.

As you get older, we can more finely tuned where the child's language is.

And almost all the children that I see at that age, the main concern is they're not talking like they should be.

So that's usually the biggest initial red flag about the possibility of a condition like this.

Now not every child that's not talking has autism.

In fact, most don't have autism.

They may have a language disorder, they may have other things, but focusing on language early on is really what we encourage families to do and pediatricians when they're kind of watching for these issues.

- Now we also talked about the fact that there's this spectrum, right?

So as children are developing, are you monitoring at certain points?

Obviously, you talked about milestones.

But what sorts of points do you see where you go, "Oh, okay, this person is going to probably be very challenged for the rest of their life, or this child will probably go to college."

- Exactly.

It can be really hard and difficult to ascertain that particularly early on.

But, you know, in our center, in many similar centers, we follow kids longitudinally.

So we can check developmental progress over time and that gives us the best indicator.

A child that's not communicating at age one or two, there's many, many potential outcomes for that.

If a child has no words and is nonverbal at the age of six or seven, that's of greater concern.

So the severity that we can try to figure out kind of unfolds over time and we try to help families understand that as we're following along with them.

- And I'm just wondering if anyone would like to share a story about any special children that you've met, because I think it's always helpful to hear stories that are encouraging as well.

So if there's a parent out there, they're just not thinking the worst.

- I mean, there's so many, you know, that I've seen, but you know, we've seen many kids that when we see them initially, they're not talking, they're not communicating.

With identification that there's an issue., intervention with speech and language therapy, with behavioral therapy, progress is made.

And I've seen many kids that then go on to develop very good functional communication and are able to go on to programs like those that exist at Misericordia.

And have employment and have a full normal life.

Now that doesn't always happen but we have to support the kids, support the families along the way so that for each individual child, given the best opportunity to reach the potential that they can.

- Well, I really appreciate you all being here.

It's so nice to know that there's help from beginning and into adulthood.

Thank you to all of our guests for their insights and to all of you for joining us.

For more information on tonight's episode and to see other episodes, go to wvia.org, Keystone Health.

For "Keystone Edition Health," I'm Tonyehn Verkitus.

Have a good evening.

(gentle music)