- Autism, searching for answers.

coming up next, on Call The Doctor.

(upbeat music) - [Announcer] The region's premier medical information program Call The Doctor.

(upbeat music) - [Paola] Autism disorder is a condition related to brain development that impacts how a child socializes with others.

Its prevalence is not affected by age, region or socioeconomic status.

Some of the symptoms of the condition include: avoiding eye contact, preferring to be alone and having no interest in sharing or talking with other people.

Many children with the disorder have problems communicating, which include delayed speech and language skills, repeating the same phrase and an inability to use common gestures such as pointing or waving.

Each child with autism is likely to have a unique pattern of behavior and level of severity.

Some with autism become more engaged with others and those with least severe problems may live normal or near normal lives.

There is no cure for autism and the disorder has no single cause.

Research has concluded that vaccines do not cause autism.

There are certain treatments to benefit children that have been diagnosed with the disorder.

They include different kinds of therapies to improve speech and behavior, and sometimes medications can help manage certain conditions.

Autism: Searching for Answers now on Call The Doctor.

- Welcome to Call The Doctor here on WVIA.

I'm Paola Giangiacomo.

Tonight our topic is Autism.

Joining us on the panel, Dr. Michael Kelly.

He is a professor and behavior analysis program director at the University of Scranton.

Dr. Cora Taylor is a psychologist at Geisinger and Danielle Burrier is a clinician and team leader with years of autism treatment experience at Allied Services.

I would like to remind our viewers, that you can participate in the conversation at wvia.org/ctd.

You can also submit your questions for future shows by emailing CTD at wvia.org or using the hashtag WVIACTD.

Be sure to check our website for a listing of future programs and watch Call The Doctor episodes any time on the WVIA app.

Now we'll begin our discussion.

Thank you all for joining us to discuss autism spectrum disorder.

Danielle, I'll start with you.

You work with children who have autism.

What exactly is, if you could explain to our viewers.

What is autism spectrum disorder?

- (Indistinct) disorder that is characterized by deficits in social communication and social interaction.

Also to the presence sometimes of stereotypical and repetitive behaviors.

Those behaviors could be motor behaviors, they could be repetitive speech behaviors, different restricted interests, lack of communicative intent between others, whether be family members, peers, adults.

And from that, children have difficulty communicating, whether it is at the very early intervention level before the age of three, all the way up to adults that we see in their twenties diagnosed with autistic spectrum disorder.

It is a broad disorder.

We see people that, inpatients that are very mild, moderate and severe in the different characteristics they have or they exhibit.

- Dr. Taylor, how would autism be diagnosed?

And at what point would a parent question whether their child might have autism spectrum disorder?

- So parents often start to notice symptoms related to autism sometimes before the age of two, but other other times, more mild symptoms might present later.

Pediatricians should be doing formal screening for autism spectrum disorder at 18 month and 24 month while child visits, as well as any time a parent raises a concern.

Often a lack of speech development is the first thing that parents notice and early intervention should be initiated at that time.

During a diagnostic visit, a clinician should spend time doing a detailed developmental interview, as well as spending some time doing some direct observation and potentially even direct assessment with their child to get an idea about where their developmental skills are as well as their social communication development and the presence of some of the restricted interest in repetitive behaviors.

- So what would take place in a deep developmental interview with a child?

- So the developmental interview often starts with the parent because we...

Since autism is a developmental disorder a clinician needs to be able to show that the symptoms were present in the early developmental period.

Which we generally conceptualize as age 3 or younger.

So we do need to have a caregiver who knew that child in the early developmental period to make a very clinically confident diagnosis of autism.

So a parent should expect to be asked a lot of questions about early developmental milestones.

And then after early developmental milestones, depending on the age of the child, their current social language and communication functioning over all.

So often that interview can last anywhere from 45 minutes to an hour.

So parents should be prepared that it is often a very extended visit, as autism can be difficult to diagnose and difficult to differentiate from multiple other developmental conditions or psychiatric disorders.

- And Dr. Kelly, why is it called autism spectrum disorder?

Is that based on the level of disability that a child may have?

- Yeah, that's a great question.

Sort of the clincher statement is you could have 10 or 20 individuals with autism and you might see different presentations of symptoms.

As you mentioned in your introduction, you really...

I think, did a great job sort of expressing how some individuals with autism might not speak at all.

Whereas others, you wouldn't even know anything was going on unless you had an extended conversation.

Some individuals have great difficulty communicating with others while others can hold very normal conversations, have jobs, do fine in school, just exhibit some symptoms.

So the spectrum really captures, is there just wide variety in symptom expression across individuals.

- Okay, so it just depends where you might fall within that spectrum?

- That's right.

And you know, sometimes people will use language such as high functioning autism, low functioning autism.

These are ways to sort of express in a gross manner, you know, what type of deficits might be associated with a particular individual.

And is one of the reasons why we do talk about the spectrum, but you have to have a real focus on individual family.

That detailed history that Dr. Taylor talked about, is so critical 'cause every child, every individual is gonna be similar in one sense, but very, very different individualized, those diagnostic assessments go a long way to developing those individualized treatments that are necessary because of that broad spectrum.

- Hmm, and Danielle, do we know what causes autism?

- There's a lot of speculation.

And I think also too that Dr. Taylor will probably speak of... You know genetic component.

The prevalence of males versus females, but there really isn't a pinpoint diagnosis, that when symptoms are brought on scene this is the definitive caveat of what was diagnosed.

So it could vary but there really isn't just one definitive answer of what causes autism.

- Well, would it be genetic, do vaccines play a role?

Are you born with it?

Or is it something that develops later on?

- There is, I know they've done research with the genetic, the genetic link.

As far as looking to see with different... And I can't really talk to this different chromosomal abnormalities or the way they're brought in conjunction with that is particular couple.

You know, the the male and the female who have a child.

There was a lot of concern, in the past.

I'm at like 21 years, of the vaccines being a major contributor to autism.

Which most research, medical research has debunked that.

But I still get a lot of concerned parents, you know wondering if the vaccines throughout a child ages 24 months and younger did have any kind of effect on symptoms coming out of...

Putting them on the spectrum(indistinct).

- Dr. Taylor, you deal with diagnostics and genetics.

How do genetics play a role in diagnosing autism?

- Yeah, so first I can piggyback on that to say this point I think we can say definitively that vaccines do not cause autism.

The genetic component and the diagnosis of autism are actually somewhat separate.

Autism is what we call a behavioral diagnosis meaning that it's a diagnosis based on symptoms that we can see.

So you can't take a blood test that's gonna tell you whether or not you have autism.

So the genetic piece is the underlying cause of the autism diagnosis.

And right now, at least in our research we're finding a genetic cause in up to about 40% of children with a range of developmental conditions, some of which may be autism.

There are some causes what we call single gene causes.

So there's one gene that has an error, in it.

And that gene not working the way that it should be can cause autism.

And there are some that are multi-gene causes as well.

- Okay, so we do know that there could be a genetic factor involved there.

What about research?

Is there any additional research in the field of autism spectrum disorder that can offer hope to parents and children?

- Absolutely, we're learning more every day about genetic underpinnings related to autism.

And there are lots of research studies available, many of which we participate in at Geisinger to try to better understand genetic causes of autism and how we can help better serve those families in particular.

- And who would be affected by autism?

It affects all races, genders.

Is that correct, Dr. Kelly?

- Yes, with very small exception, all around the world the rate of autism is the same.

There's exceptions that relevant, but things like race, religion, gender... Well it doesn't matter, right?

It's an equal opportunity disorder.

And so there's no escaping that statistic.

One thing I'd like to follow up on what.... Something you said if you don't mind about, you know, after you get that diagnosis and we talked about how there's no cure and we we dabbled into intervention a little bit.

We should note that there is hope for families.

And Dr. Taylor mentioned about those first symptoms showing up at maybe age 18 months and 24 months.

And that's when the pediatrician should be doing those developmental screenings.

There's a lot of data out there showing that if you do the right treatments, the right dosage for the right amount of time, early on you can get a lot of symptom recovery.

You know, we don't talk about... You know, not having a diagnosis anymore, you talk about symptom reduction usually and then the capacity like to go into a mainstream classroom.

That's one of the... You know, sort of those markers is the extent to which a child, might have these really significant deficits at 18 months, 24 months, 36 months.

And you do all those therapies.

And then you look at first grade and where does that child now, match up to the typical peer in first grade?

And so when we talk about, there's not a blood test and it's absolutely true, and there's not like a shot you can give that can get rid of the symptoms.

There are interventions that can be very, very effective.

That's one of the things that we teach in the programs at University of Scranton.

But it is laborious, it's hard to get, it's a struggle for families to get integrated into those therapies, for sure.

- So if a child isn't meeting their markers like making eye contact or playing peek-a-boo.

I mean these are signs that a child may have a disability, but you're saying that if they are treated, if there's early intervention, they could maybe meet up with their counterparts?

- Right, and that's through the criteria you look for, right?

So, we noticed those milestones aren't being met, there were obvious ones ,like the cooing, the baba, mama, dada.

And then we know that children should be saying a certain number of words by 16 months, as certain two-word phrases by 24 months, and so on and so forth.

And those are big red flags.

The language ones are real big red flags, but then there's the eye contact, perceptive behavior, saying and doing things over and over again are the other red flags.

And that's when you would for sure, go for a diagnostic evaluation.

That's when Dr. Taylor would do her diagnostic magic, figure out what's the right diagnosis.

And that's what to help you get on the right track for those intervention services.

- Okay, now, Danielle, you work with children who have autism.

Tell me about how you worked or you conducted group therapy before COVID and how children benefited from your group sessions.

- Sure, we were very fortunate enough to run many social skill groups in various age ranges.

So I had children from 8 years old to maybe 10 -12 in a group together.

I had 12-16.

And then we had group 16, the ages of 16 and up to the early twenties.

And what we did was we worked on all of the great pragmatic social skills that these children need being diagnosed with ASD.

Turn-taking, topic maintenance, topic initiation, pragmatic filter, picking up on social cues, that reciprocity, the conversational exchanges between one another, making a friend.

Also to just social distance and what's appropriate, what's not appropriate.

So we would work on that in group, at Allied Services, but then I was able and very fortunate to take them out the community.

So, we would go to various places, various venues, whether be the movies, a restaurant, going bowling, going to Steamtown and taking all of those wonderful skills that we were practicing in and generalizing and carrying them over.

That was so so important, because it's great to learn things in a sterile environment, but they need to be able to generalize and bring them over and carry over into everyday situations that they would come across.

Ordering for themselves on a menu, going up in asking for their bowling shoes.

Things that parents beforehand would do for them.

Also to sensory integration, sensory modality challenges.

I had children who could not stand the sound of a movie, but by bringing them out and talking through it and you know making tasks schedules and discussing what's going to happen ahead of time and slowly incorporating some of those sensory modality techniques.

Then they were able to go to the movies and love the movies or go to a crowded place that wasn't... You know to taxing or over sensory overwhelming for them.

(Indistinct) - So, are you now able to still conduct those types of classes or (indistinct) that just all come to a halt and never resumed?

- Yeah, pretty much came to a halt for a while.

Real quick, I know some of the virtual venue like Zoom and Google classroom and people were able to gather as group for academic purposes, we're medical models.

So we had to find a platform that Hippo, it was hyper friendly.

So we just, within the last month, we started to bring back to some of the social groups.

We had parents that were very, very desperate to bring their kids back and they really wanted that social interaction back again.

And they just didn't have it, especially if they were in a school district that was just strictly virtual and the children didn't have anybody to communicate outside of their home.

You know whether be their siblings or very close family.

So they were very, very integral in trying... For us to get that initiated as quickly as possible.

So we just began a few groups over, I think they are just past couple weeks, since the end of January ,beginning of February.

Bringing them back for an evaluation and doing a Zoom like group of 3-4 kids.

And very excited.

Hopefully we'll be able to incorporate more of those as the spring and summer months and so.

- Wow, Dr. Taylor, do you think that parents can help with their children and their disability in the way that Danielle has in at Allied?

Like, do you think parents can learn some sort of techniques to assist their children on how to behave in a social setting or in a classroom or with other children?

- Absolutely.

I think it's really important for parents to be partners in their child's care.

So, if they're working with Danielle or another therapist or they're working with their behavior analyst or their speech therapist to try to open the communication between the therapists and the parents or the caregivers.

So that they can support that child and support what the therapists are working on in therapy and do those same sorts of skills and strategies at home.

So, yes, in partnership with good parent training that is an excellent way to help children succeed.

- Dr. Kelly theses lessons, that these kids are learning.

You know how to behave in certain situations and just how to, you know, try to live a normal life.

Is this something that constantly has to be taught or once they're taught it, it's just learned behavior and they can move on?

- That is such a pointing question.

One of the things that we talk about in our intervention therapies is how do you transition something from something you're working on to like a maintenance phase, right?

- [Paola] Right.

- And so a maintenance phase suggests that's a learned skill that you could exhibit whenever you're like in the future and in any circumstance.

And it turns out that that can be a real challenge, for some children who are living with autism.

And that's what I think parents right now are really facing that struggle.

Where they're finding that there's the skill drop-off is probably happening at a much larger rate than their same age peers.

- Because of COVID?

- Well, yeah.

I mean COVID is exacerbating that difference, right?

So that's a disparity that COVID is making all the more clear.

And I think that what Dr. Taylor was absolutely brilliant.

It's great to make sure you can empower parents with information.

It has to be scientifically valid information, though.

(Indistinct) We talked about vaccines and multiple people felt the need to make sure we repeated that, because it's a heated thing, but it's a conspiracy theory.

It isn't true that vaccines cause autism.

And we all know that, but you're fighting that uphill battle.

And it is hard to get parents the right information and help that they need so that they can be as fully empowered as possible.

- Right, I mean, you're suggesting that parents be involved in the skills that their children learn so they can aid them?

- Well, they already are.

And they'll tell you, and if you you spend a couple minutes with any caregiver of an individual living with autism, you'll see that the struggle is real.

I mean, it's a social justice issue from my point of view.

And it's one of the things we sort of talked about off-air.

Schools better be able to go back to September.

I mean, the families and the children are really struggling in this environment.

There is help out there.

It's hard to find.

I recommend that ... Is sort of informational places you can go, but just like locally, North Eastern Pennsylvania.

There's the Autism Collaborative Centers of Excellence, right those founded by the All One Foundation.

It connects agencies, institutes, all sorts of players, all over this area where you can get all sorts of information and then access through information educational resources.

I don't want to suggest the parents aren't already really overwhelmed because they are.

COVID has just made it far, far worse.

- So what do you see will be and even greater struggle if kids aren't in the classroom full time, come the fall?

- I don't like to talk about , right?

(Laughing) But it's more and more falling behind.

It's it's like, there's the plan B seems to me that schools are going to reopen.

Everyone's going to try as hard as they can to spend the next year getting everyone caught up from the missed year.

I don't know if there's a really good plan C if the schools aren't back in.

I think everyone's got their fingers crossed as hard as they can.

I don't work in those schools.

You know, where kids are getting the elementary and you know also on education.

I know it's a struggle, I don't even feel that struggle.

I'm sort of like from the ivory tower, seeing what that is.

But we gonna take up with some creative solutions in the event when, and if this sort of thing happens again.

- Would you agree with that Dr. Taylor?

- Absolutely, and I also want to just emphasize something that I think Dr. Kelly said that was excellent, which is that we do have this wonderful resource, the Autism Collaborative Centers of Excellence in our area.

And also the importance of evidence-based treatment, which he also mentioned.

If you Google autism, you gonna get a lot of good information, but you're also going to get a lot of bad information.

And by going to a trusted resource, like Autism Collaborative Centers for Excellence, you can kind of have a partner to help you filter out the bad information so the good information rises to the top.

- And Danielle, you can live a good life with autism even into adulthood, correct?

- Absolutely, absolutely.

And with really great interventions, like was said before with early intervention and a collaboration of speech therapy, sometimes meeting occupational therapy, behavior therapy and their academic course, they could very, very productive lives.

I have many, many patients that I've seen over the years that are doing very well.

They're working outside of, after their graduating, they leave high school, and they go on to work jobs and they lead very, very productive lives.

But really intervention is so, so important.

And once parents realize what the benefits of that are, there's no stopping the potential.

- Thank you, Danielle, thank you to all the doctors.

Intervention is key.

Well, once again I'd like to thank our panelists for participating in our discussion on autism spectrum disorder.

For more information and resources on this topic visit wvia.org/ctd.

I'm Paola Giangiacomo for Call The Doctor.

Thank you for watching.

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