[Music Playing] >>Lori Banks:Coming up next on Being Well Gail Richard, director of the Autism Center at EIU will be here to talk about Autism Spectrum Disorder and how children are diagnosed.

We'll also spend some time talking about young people with ASD and how they can make the transition from high school to college.

A new program at EIU called STEP is doing just that.

Gale has a lot of great information to share so don't go away.

[Music Playing] >>Female Speaker:Production of Being Well is made possible in part by Sarah Bush Lincoln Health System.

Supporting healthy life styles, eating a heart healthy diet, staying active, managing stress, and regular checkups are ways of reducing your health risks.

Proper health is important to all at Sarah Bush Lincoln Health Systems.

Information available at sarahbush.org.

Dr. Ruben Boyajian, located at 904 Medical Park Drive in Effingham, specializing in breast care, surgical oncology, as well as general and laparoscopic surgery.

More information online or at 347-2255.

>>Chorus:Rediscover Paris.

>>Female Speaker:Our patient care and investments in medical technology show our on going commitment to the communities of East Central Illinois.

Paris Community Hospital Family Medical Center.

>>Lori Banks:Welcome back to Being Well, I'm Lori Banks and I'm so happy that Gail Richard from the Autism Center at EIU has joined me today.

>>Gail Richard:Well thank you for having me.

>>Lori Banks:Well we had you on I think it was probably a year ago.

So let's talk a little bit about where we're at in terms of a nation with autism spectrum disorder.

>>Gail Richard:Well it continues to escalate and increase in both prevalence and incidence.

And so our new figures are 1 and 68 and I'm showing my age a little bit but when I started working autism was considered a low incidence disability.

It is now the highest occurring developmental disorder that we have.

>>Lori Banks:And what are the experts saying is the reason the numbers are going up?

>>Gail Richard:Well it's multifactorial, actually.

One is that we probably are better at diagnosing it.

We're more aware of it with all of the media coverage, etc.

Bu there's a lot of research that's starting to show that there are toxic kinds of things in our environment that are creating some subtle genetic mutations that then allow the brain to develop in a little bit different way in these young children.

And then we also look at some of the things that we put in our bodies throughout our lifetime.

One of the interesting studies that just came out is maternal use of antidepressants.

And so these subtle genetic mutations are changing the way that brain develops in young children and we're just seeing a lot of increase in it.

>>Lori Banks:And when did we kind of make a change from calling it just autism to autism spectrum disorder, ASD?

>>Gail Richard:Well the diagnostic and statistical manual of mental disorders is really the definitive bible for diagnosis.

And it was always called pervasive developmental disorder, which was very confusing.

And in the new version that came out in May of 2013 we switched to autism spectrum disorder.

In fact we had been doing that unofficially for really quite some time.

And part of that is to reflect the fact that autism is on a continuum of severity from very mild to very severe.

And so we really can't just say it's one tiny entity.

It's also been sometimes diagnosed with what we call syndrome disability, which means you have multiple pieces that we need in place to add up to that diagnosis.

So a spectrum disorder is a really a good way to define it because it gives us that continuum of severity as well as some variation in the actual characteristics that show up as part of the profile.

>>Lori Banks:Alright, so you're the director of The Autism Center at EIU, talk a little bit about how that center evolved and what do you do?

>>Gail Richard:Well the Communication Disorders and Sciences Department has a speech language-hearing clinic and it has it as part of the accreditation process for training our students and it's been in place for a long time.

And as part of training our students they need experience in a variety of disorders so we need stroke patients, hearing disorders, articulation language, etc.

But our client base for the autism spectrum was really increasing and we just couldn't accommodate them because our students needed diversity in their experiences.

One of the issues is without a label you can't receive services in our health care.

And so when families were wondering if this was autism they couldn't get an early intervention, they couldn't get services in the school unless someone diagnosed the disability.

Well, the individuals with autism would cue into our normal line for an evaluation and so a lot of them were going to St. Louis, Chicago, Indianapolis, and in those metropolitan areas they were waiting as long as a year.

Well, in a young child that's some key intervention time.

And so one of the things we wanted to do was at least get those families in for an evaluation, introduce a diagnoses, and a report with recommendations that they could then take back home, but then they qualify for services.

They'll qualify in early intervention in the hospitals and the schools but at least they can get started.

And so the impetus behind The Autism Center was really to get those individuals in in an adjunct clinic that was actually separate but part of the speech/language/hearing clinic.

So our goal now with The Autism Center is when a family contacts us our goals is to try to get them in the semester that they contacted us.

And so it's just a more timely way to get them started on that path that they're going to have.

>>Lori Banks:Talk about how, there is a process, I would imagine for when a child comes in, a diagnostic process.

I know it's probably kind of complicated but can you kind of explain for parents that may be thinking "my child needs this."

What should they expect?

>>Gail Richard: Well, actually our [markers] for diagnosing autism are down to about 15-18 months.

And so we're really looking at that joined attention, that shared interaction, that awareness of people versus objects.

And so one of the things we see medically is sometimes a doctor will go through a checklist and in that checklist they'll say, "Yes your child has autism."

And then it's kind of goodbye and the family doesn't know what to do.

And so one of the things that we do is actually spend sometimes 2 to 3 hours with that child and the family and really see how they interact, how they play.

We will try some formal standardized tests so we can compare them to peers if they're capable of doing that.

But we look at the whole child.

So we look at non-verbals, facial expression, interaction, share reciprocity within an interaction.

We look at their expressive language, their comprehension.

But we also look at motor, sensory, feeding issues, so we really want to look at the whole child.

One of the things that is happening is, I think you were asking about the incidence, I think there's an over diagnosis because someone will [seal] like a self-stimulatory behavior.

A child who is flapping or spinning, or a child who has some sensory things and they immediately diagnoses autism.

Well, a sensory deficit occurs in many developmental disorders.

And so that's why we call it a syndrome or a spectrum.

You have to have all those pieces in place.

Autism means self, and that's your key piece is they need to be kind of in their own world, a little isolated, rather do my own things and really not aware of my environment and other people.

So that's what we're looking for and then we just match them up with the criteria.

But one of the things we really try to do are extensive recommendations.

So get started in speech language therapy.

Get started in some occupational therapy for the sensory things.

And then if we get started early enough we can modify through some of those characteristics.

>>Lori Banks:So what is the youngest age that you recommend?

If a parent is thinking, "My child may be exhibiting some of these behaviors" how young is too young?

>>Gail Richard:Well I think the youngest that we've actually evaluated has been able 2.

And at 2 sometimes you can just say it's a developmental delay, it might be in the autism spectrum but we've got diagnoses to introduce and let's get started on some intervention.

And in some of those cases what we'll say is "Come back in another year or so and let's see how your child's neurology is evolving, and then we'll decide if we'll really want to call it autism spectrum disorder or it's going to be some other type of developmental delay."

So 2 is about the youngest that we've been involved.

>>Lori Banks: So you do this diagnosis and you provide recommendations.

Then do they seek treatment elsewhere in other places or are you a treatment?

I don't want to say treatment facility, that might not be the right word, but you know what I mean.

>>Gail Richard:Sure.

We a speech/language/hearing clinic and again, we're limited in how many clients we can take.

And so certain percentages are in the autism spectrum.

But we can't take everyone that we're doing the evaluations on.

And to be real honest, we have people coming from all over the state and the country for evaluations.

So a lot of them are going to take our recommendations and our report back to a hometown somewhere else for someone to implement it.

So we're as specific as we can be.

One other area when you talk about the little ones, I was just thinking that some of the real little ones will get involved with some of the feeding issues.

They'll have a lot of sensitivity with textures and taste so sometimes we'll have even younger ones that we've got to work on some of the feeding for nutrition reasons.

>>Lori Banks:So a sensory issue doesn't necessarily mean it's autism it might be something else.

>>Gail Richard:Right.

Anytime neurology is delayed you will have sensory issues but it doesn't necessarily mean autism unless we have that social isolation.

But the sensory piece is probably the most visible; it's the one you notice.

So often that's the reason we'll get the referral is they have some of those sensory or behavioral issues going on.

>>Lori Banks:Well we wanted to focus today's show a little more on this generation of these kids that are now transitioning into adolescence and early adulthood and going onto college.

And as we know adolescence brings out a whole other host of issues with hormones.

>>Gail Richard:With normal.

>>Lori Banks:Yeah with regular kids.

So what are some of the things that those kids experience differently or is it more difficult for them because they're transitioning into adolescence and also bringing along their spectrum disorder?

>>Gail Richard:Well autism is actually a biochemical neurological disorder.

So the chemicals that run their neurology are different.

So you add puberty and those hormone changes and things get a little more exacerbated, a little more dramatic.

And so sometimes even our milder individuals in an autism spectrum won't be diagnosed until we hit some of those hormone changes.

But most of these individuals, mom and dad are aware of the disorder, we've had special education teachers, we've had lots of supports in place through school.

People know how to work with this child.

They know how to keep them calm and productive in an educational setting.

Now they're on a college campus, none of those supports are in place.

And so it's just very challenging.

Usually the ones that are going to come to college are very bright individuals, but the program really needs to address 3 areas and that's the academic monitoring, but more importantly the social skills and daily living.

And those are the things that become very challenging but are very threatening to a parent who knows we need an environment that is really pretty controlled for this child to be productive and effective.

>>Lori Banks:So what would be things that would be more challenging for a young person with autism at a college that maybe for a non-autistic child would be just fine and not a big deal?

>>Gail Richard:Sure.

A lot of it is an over stimulation and so if you think about "I need some down time" well if you have a roommate you never have down time.

So one of the things we're doing is giving them the option of a single room so they really have a space where they can kind of vent and get comfortable.

But just some examples of things that have occurred, one young girl was not eating, was turned into the counseling center as being anorexic, having an eating disorder and suppose to go through a whole program and counseling, etc.

Well the issue was actually that in the residence hall the food was dished out and touching and she couldn't stand that.

So it was as simple as this sensory thing but she wasn't eating because of the way the food was presented.

And it was as simple as saying "Put her food in separate containers on that tray."

But it became a much bigger issue than it needed to be.

We have a lot of students who will be misinterpreted in the way they interact with someone.

And so we just need to kind of educate people as to how to interact with these individuals, keep them calm so that they don't get overwhelmed by too much stimulation in the environment.

>>Lori Banks:I mean when you think about when you send your kids away to college everything changes; where they live, how they eat, how they interact, and all of sudden this new found freedom, and even how, you know, classes are taught.

It's much more you don't have the teacher guiding you along.

A lot of it is more self-directed.

>>Gail Richard: One of the issues that we really work on is time management.

And so we did an exercise actually with our group of students, we were finding that they were late to that first morning class.

And so we did an exercise where, alright you just got out of bed, now write down all the things that you need to do before you're out the door for class.

So they wrote.

So then we said now put a time estimate next to that because one of the young men said "I need 3.5 minutes" and we're like "I think you need a little longer, but let's look at this."

So we put a time next to it and looked at that time and then said "So when are you setting your alarm?

Because this needs to match."

Then we looked at the things that they listed there and they forgot many things.

So we've slept all night, many of them weren't going to go to the bathroom because that wasn't on that list, but of course they were going to, they just didn't have it in that list.

So the time management is one big thing to help them.

Another one is many of these individuals are gamers.

And so you talk about that independence of "Now I'm on my own."

Well we had a young man who would just game all night, he'd fall asleep and miss his classes in the morning, he missed breakfast, but he was taking his meds.

So no sleep, no food, but taking meds, not a good combination.

And so it's those kinds of things that we really work on to help them learn how to manage that because mom and dad have done it in the past.

>>Lori Banks:We should talk about that EIU has a program called STEP and you've been referring to that.

How did that come about?

>>Gail Richard:Well The Autism Center, we were fundraising for it for several years, but we actually launched it in fall of 2014.

And as we were working with The Autism Center on evaluations and we do an education piece [unclear dialogue] at a conference each fall we were getting called by the Office of Student Disabilities Services that we had some students within the autism spectrum who needed more than what they had provided.

So we started the support group for them last year and it was just an hour one night a week.

And we just found that wasn't really enough.

And so over last year and through the summer we worked on developing a program specifically for college students who are enrolled at Eastern and putting those support things in place.

And so we launched that this fall in 2015 and what we do is really put some things in place to get them started.

It's called Students with Autism Transitional Education Program.

Our goal is if we start it intense and get them acclimated to campus that we can gradually back off and hope that they can function independently as a typical college student.

So similar to what student athletes have, we have study tables 3 nights a week for a couple hours to make sure they're getting that study time.

We do a support group meeting and that is really to help them understand their disability.

Again, it's mom and dad who have been involved with this so we want them to understand what some of those challenges are and how to self advocate.

We assign a mentor to them; a one on one mentor, and that person engages them in some social activities.

So we try to make sure that they look at clubs that are on the campus, that they go to athletic events, to concerts, plays, because that's part of being on a campus too.

And again, autism "must stay in my world, in my room, and not do anything that I don't have to."

So we have a lot of who will go to class and then they're back in their room, and we really want them to be part of that bigger picture.

And then we monitor the academics.

So we set up a schedule for them and we put everything on that schedule; eating, sleeping, gaming, exercise, everything.

But that way they have that to refer to and that down time is almost scheduled for them so that they know "Ok this really is my time now, but these other times are when I need to study."

And then we monitor their academics.

So again, that time management.

If you have a paper that's due let's back it up and let's get started on it so we're not doing those things at the last minute.

So we're really excited about the program and I think it has real possibilities for Eastern in that this is a good campus for this kind of program.

Eastern has a feel of almost a private university even though it's state supported.

We don't have those huge lecture halls, which are really problematic for these students.

Our student faculty ratio is very low.

It's also a pedestrian campus.

>>Lori Banks:You can walk everywhere.

>>Gail Richard:Exactly.

Most of these students don't drive and that's intimidating to them.

And so they can walk the campus very easily and then their mentor will ride the panther shuttle with them when they get to campus and show them how you can get to Walmart and the movie theater and the grocery store and things in town, again, without having to drive.

So the program is really going well and we're getting a lot of interest.

There really isn't anything like it in the Midwest.

The closest one is Western Kentucky.

And so families are really excited that there is something in state that the students can go to.

>>Lori Banks:So what about for parents if they want to send their kid to a university that doesn't have a program like this?

You talked about some of the things that they themselves and their child may have to kind of work through to kind of prepare them.

You talked about time management and just the different environments.

What other advice would you have for parents to help them get their child ready for this next phase of their life?

>>Gail Richard: The biggest thing is really that organization.

That planning, managing, and filling in time in an effective way.

And so I think sometimes turning some of that independence over to them and not always, they are probably in a habit or a pattern or just doing things for them.

And this is typical for your normal teenager, to back off and say, "Now you do your own laundry.

Now you go pick up your own medication."

And something as simple as you are out of deodorant, shampoo, what we do is tell mom and dad to go get it.

Now they have to go it or they have to anticipate "I'm going to be out of that tomorrow so I've got to go get it today so I have something."

So it's really a matter of turning over some of those daily living skills to them so that they learn how to be responsible for that.

>>Lori Banks:How do parents know if their child would be ready for college?

Because a lot of these students are very bright, score very high on ACT scores.

How do they know if they're really ready for that next step?

>>Gail Richard:One thing I really recommend is to consider doing a camp kind of thing.

A couple of these students actually came to band camps or other short-term things on a college campus where they can kind of try it out a little bit.

Some of the students went to a community college so that they could live at home in terms of a living environment but they could try out "Can I handle the academics, a different teaching style, time management for organizing, and to tests and projects, etc."

So you can do it in little steps.

There's also a nice program that's at Indiana University in Bloomington that is a 2 week program for students to go on campus, they live in the residence halls, they go to classes, they have a one on one mentor, but it's not academic classes it's more like daily living classes.

But again, it's an opportunity for them to see if this is a good match and I can handle being away from home and stretching myself.

>>Lori Banks: Well I mean obviously with the numbers, we're down to 1 and 68, there are going to be a whole generation of these kids coming to colleges and universities and we need to be prepared for that.

>>Gail Richard:Absolutely.

We are seeing more of the Asperger'’’s and high functioning individuals and some of that is accredit to the early intervention that we've done, the earlier identification.

So we don't cure autism but we certainly can modify through those characteristics.

And so we're seeing more and more of those individuals who are very capable, have great potential to do things.

I often will say to parents, "Your son or daughter is likely to invent something that will make all of our lives so much better."

But we've got to develop those social skills, that social awareness, that daily living thing so that they can find that niche to use that intellect in a productive way.

>>Lori Banks:Gail I wanted to ask about the role of alcohol and people with ASD because that is part of sometimes college life.

How does alcohol effect students with ASD different than non-ASDs?

>>Gail Richard:It has a very dramatic effect because it's a biochemical disorder.

And so you add in that alcohol and it has really some very negative effects.

And so we had one student several years ago who was a Mountain Dew addict and someone poured Ever clear in it and he ended up at Sarah Bush.

It almost killed him.

And so you add that biochemical component and it has a very dramatic effect.

We're very good at trying to warn students about "You need to eat.

You need to have one drink.

You need to have someone with you so that they're monitoring this."

But to be real honest, most of our individuals in the autism spectrum are just adamant that they will not drink, they just want nothing to do with it and I think that's a really good thing.

>>Lori Banks:So does it make them, do they react differently?

Or do they become more drunk faster?

What kind effect does alcohol have on them?

>>Gail Richard:Well it can vary but usually it almost shuts down their system.

It's just a real extreme reaction.

So not the craziness necessarily but more of the system just kind of shutting down.

>>Lori Banks:Ok, good information to know.

Well Gail, we're all out of time.

So great to have you back and hear about the good things that The Autism Center and the STEP program is doing for Eastern.

>>Gail Richard:Well thank you.

>Female Speaker:Production of Being Well is made possible in part by Sarah Bush Lincoln Health System.

Supporting healthy life styles, eating a heart healthy diet, staying active, managing stress, and regular checkups are ways of reducing your health risks.

Proper health is important to all at Sarah Bush Lincoln Health Systems.

Information available at sarahbush.org.

Dr. Ruben Boyajian, located at 904 Medical Park Drive in Effingham, specializing in breast care, surgical oncology, as well as general and laparoscopic surgery.

More information online or at 347-2255.

>>Chorus:Rediscover Paris.

>>Female Speaker:Our patient care and investments in medical technology show our on going commitment to the communities of East Central Illinois.

Paris Community Hospital Family Medical Center.

[Music Playing]