Coming up on IGI, meeting the needs of a family member with ASD can be challenging and stressful for family members.

Understanding Autism Spectrum Disorder and the resources available to assist families.

Stay with us.

♪ This program is brought to you with support from a Louis H. Humphreys Charitable Trust and from the friends of KTWU.

♪ Hello and welcome to IGI.

I'm your host Val VanDerSluis.

Approximately one in 36 children in the US is diagnosed with Autism Spectrum Disorder and boys are four times more likely to be diagnosed with autism than girls.

While a child's autism diagnosis can have an emotional financial and sometimes a physical impact on families, it's not always negative.

An ASD diagnosis provides answers and a path to support sometimes getting youth with autism spectrum disorder involved in theater and fine arts can have significant positive impact on self-esteem, of which we have seen firsthand through our guest today.

And joining us are violinist, violist and composer Stuart Ross Carlson and his parents, Jack and Susan Carlson.

And we're also happy to introduce Sandy Crawford, vice president of pediatric services, and Linda Bergen, board certified behavior analyst, both with the CapperFoundation.

Stuart, Jack, Susan, Sandy and Linda, thank you all for joining us today for this important discussion.

We appreciate all of you being here with us today.

Our pleasure.

Yeah.

Thank you.

And so Jack and Stuart and Susan, they have been partners with us for, gosh, a couple of years now on on various content endeavors, including a national distribution that we're working on.

And so we want to be sure that we incorporated Susan and Stuart and Jack within our discussion here.

So let's go ahead and get started on on, you know, Autism Spectrum Disorder.

You know, I thought first we might talk about ASD and a little bit what is autism.

Autism is a neurological and developmental disability that affects the way we communicate with other people, the way we think, the way we learn those types of things.

And so, you know, and Jack and Susan will move, move, move, move over to you both.

When you hear a diagnosis, you know, you're your son has autism.

You know, how does that impact you?

Early on, You know, we didn't know much about autism.

And I think, you know, it was either the the stereotypical communication or sort of Rainman savant.

And so we needed education initially to be able to understand what was happening and how to respond.

We were very fortunate to find some amazing folks in the Ann Arbor area, and it took a village literally between therapy and the school system and us at home, you know, to deal with this, you know.

And tell us a little bit about your story.

And Stuart, you're welcome to tell us.

You know, how has well, first off, you have a wonderful story.

You know, I know you've talked about the Beatles and Mozart, you know, chiming in in the womb through, you know, you know, Tell us a little bit about that.

I was born 26 weeks premature in 1996, and I had to go through emergency surgery.

And I spent exactly 100 days in the intensive care unit.

I do have a twin brother named Spencer who unfortunately didn't make it through emergency surgery.

And I had to have therapy to develop my fine motor skills.

And that's when I started to learn piano at the age of two.

And I didn't pick up a violin until I was ten and a half years old, which is a really late.

You wouldn't know it based upon your performances.

Stuart, you were amazing.

Thank you.

-Yeah.

And so let's talk about the I know there's autism and there's all different types of autism.

Can you tell us a little bit about what types of autism exist and what the challenges are for each?

Well, as time has changed the way autism is diagnosed has changed.

And so currently they they do not diagnose with Asperger's in specific names.

They they diagnose at different levels and they have a severe level.

And then gradually three different levels.

And each one of those tends to be impacted by language or the restrictive repetitive behaviors that we sometimes see.

And not everybody diagnoses exactly the same either.

So but it's an overall diagnosis.

And Linda and Sandy.

Can I ask a question?

Is that okay?

I don't mean to steal Val's thunder.

Yea, that's fine.

So what we had always heard is that everyone diagnosed with ASD are individuals.

So in other words, like there's a great saying, I don't know if you've heard it once you've met one person with autism, you've met one person with autism.

Just because the spectrum is so wide, is that your experience?

Very much, very much our experience.

The spectrum is very wide.

And no, no, two children are the same.

When I work with families, I can't use the same system for two two kids.

They're very different.

And I think to go along with that, each child is going to present differently.

They may have more strengths in communication and their social skills are not very good or they struggle with that.

They might have eating disorder, they might have fine motor disabilities that make things harder to do when they get into grade school and using pencils and things like that.

So it's for therapy.

It should be based on the child's abilities and what they have delays in so that you can really focus on those.

And if I can talk, yeah, I was just going to add what we really discovered when we started pursuing therapy for Stuart.

I think initially there was sort of a presumption that we were going to try to mask autism or change autism or somehow cure autism.

And what we really learned eventually by following Stuart is we were looking for ways to equip him to live in a world that might not be oriented toward who he was and how he saw things, but ultimately what we were really doing is trying to help him be more of who he was.

Exactly.

We want to bring out their strengths.

We want them to feel comfortable where they're at and what they they enjoy doing and their lifestyle.

You know, Jack and Susan have done so good, you know, in being with the early intervention and everything, you know, here in our area, if you know someone gets that, you know, your child has autism, what kind of early intervention is there available here?

Well, the there is a variety of early intervention.

Of course, you want to to try to get started as soon as possible.

And here in Kansas, there is definitely not enough availability of services like we'd like there to be.

So encouraging families to seek out and do the most they can.

But there are, you know, organizations that like papers and oh, the state has there are different levels of support.

The schools, those kinds of things that I encourage families just to seek out as much as they possibly can find what fits their family.

Absolutely.

And, Sandy, I know you discuss a little bit about these statistics or, you know, any kind of particular numbers.

I know in the introduction here, we talked about how autism impacts boys more than girls.

What kind of statistics do you have that can expand a bit more on on that or, you know, and why is that you know is is they know why there's more there's more scientific evidence to say it's a genetic disorder.

So that's probably part of it.

There are certain genetic disorders that have a tendency to affect the X Y chromosomes versus the X X chromosomes of males versus females.

That's probably part of it.

I think the interesting thing is that scientists have not given up on studying autism for the why it happens, why it happens more with boys and girls.

How to best treat autism, all of that very important research, to be continued.

Absolutely.

And Jack and Susan and Stuart, I know Stuart has a Asperger's, is that correct?

I, you know, is you know, how how long did it take for them to you know, how did you get to the the diagnosis?

Do they immediately tell you, here's what he has and here's what you need to do or was that just more research that you had to do on your own to figure out what the next path was?

Yeah, we really learned to cobble together a variety of services and we we researched a great deal.

We talked to professionals, we talked to other families in the community.

We talked to adults with autism.

And then we developed connections within the community and then we really just followed Stuart.

You know, he he made it very clear when he connected well with something that we were doing and you could see it, him growing with it.

And we did more of those things.

And we were lucky to have good support in the schools so that he was able to have inclusion, for example, in the music program, which made a huge difference.

I mean, his music.

And then there are other areas of interest that he's found ways to integrate into his daily, daily life.

So maybe some talk about your radio interest or to give him an example of that, it I'm a licensed ham radio operator and that intrest combined with music has led me to create what's called a Part 15 radio station in my local area and eventually end up hosting an internet radio show on a station called Z103.COM that I'm really glad to be a part of.

And Stuart tell everybody about like you're so I'm interested to see if Linda and Sandy find this to be true people with ASD tend to have shall we say, very focused interests.

Neurotypicals might call it an obsession, but Stuart, do you want to share some of your best interests?

Absolutely.

When I first when I was much younger, I became interested in doors and especially watches and a little bit later I became interested in weather and weather stations.

And all throughout my life, however, music is has carried with me as an interest that I continue to be absolutely passionate about.

I'd like to think of it as sort of a first language.

That's awesome.

Stuart You know, so Stuart does such a good job of, you know, we communicate.

We you know, when I saw him with the Topeka Symphony Orchestra composing these pieces and just it was so impactful to see him standing in front of this huge group and telling where we needed more, where we needed less.

The composer himself, Mr. Pickett did so good at including Stuart on every element of decision within that.

Yeah.

So Stuart, tell us a little bit about, you know, is that you know, for you, you know, being included, you know, your successes that you've had, you know, how does that feel for you?

Does that push you to keep going forward?

And, you know, just in general, how do you feel about how far you've come to now?

Looking back I feel incredibly lucky and fortunate that I've had doctors who have literally saved my life.

And I feel incredibly fortunate to have had the opportunity to use that I've had both recent and in the past, and they absolutely pushed me to keep going.

And my ultimate goal is to become a role model for others who have ASD and I hope that through listening to my music, they can feel inspired and encouraged to pursue their own dreams and passions.

Yeah, that's very well said.

I love it.

And Jack and Susan, how do you both feel about Stuart successes and what would you encourage other parents who are in similar situations?

How would what would you say to them?

You know, I feel like the metaphor I use is it's sort of like Stuart arrived in the world from a different culture.

You know, his neurodiverse way of looking at things wasn't as natural as what you would consider typical.

And what's ended up happening is we've learned as much about the way he sees the world as he has learned to operate in our world.

And then from there we've just ended up with a much bigger, richer life.

And he's taking us.

His music and his experience have taken us all over, including that's how we met all the folks at KTWU.

You learned about your station and all that you do in your community and with PBS.

So it's been a ultimately, it's been an incredibly wonderful, enriching part of our lives.

Absolutely.

Yeah.

What's great about this partnership that we have here with the Carlsons is Stewart's pieces will be featured on on PBS stations nationwide in spring of 24.

So we're very excited to have this partnership that we have with you all.

So we're, - well we're the fortunate ones Val, you guys have been amazing.

Oh thank you.

So obviously, Stuart is doing great things and you know and I know I have a friend whose daughter has Asperger's, but she is in college fully functional.

But there's certain things that are challenges to her.

So if you could talk a little bit about, you know, the varying elements of challenges that come with those levels of diagnosis, Linda, with them.

So that the different challenges vary completely for every person in every setting, those kinds of things.

But I think the idea is that we we learn to accept those and accept not just the families, but that the community in general learn to accept people and learn to find other ways to support, communicate and share.

Be involved with all of us, all the people in our community as best we can.

And in those those challenges are opportunities.

I think this family has taken a challenge and turned it into a fantastic opportunity and other families can do the same thing.

What do we we do to expand and promote the gifts that we're given?

So it's not all doom and gloom.

You know, when you get a diagnosis and and any challenge is not all doom and gloom, You know, it's it's accepting and finding the resources you need to allow your child to thrive.

Right?

Absolutely.

So with the Capper Foundation, Sandy, Can you talk a little bit about the services that are there to be able to help out families and children with autism?

Sure.

Our pediatric services offer physical therapy, occupational therapy, speech therapy, and Linda, being the behavior analyst, we provide services for children from birth or infancy up to age 21.

It's all individualized.

So the evaluation is done by one therapist.

And typically that therapist follows the child all the way through the need for services.

We have some children who receive one service.

We have some children who, during the course of their treatment, have been touched by every service, including Linda's program.

We heavily involved the family as well, because we see the child for 30 minutes or 45 to 60 minutes once a week.

The family is the one that takes care of them the rest of the time.

And so we work closely with the family to be able to carry over those activities at home.

Linda has also had the privilege of going into schools and helping do it the teachers in the classrooms to help the child be successful there as well.

So we have summertime coming up and family vacations.

You know, I've heard that families who have family members with ASD, they love routine, you know, and but I've heard that you can travel and Stuart's a perfect example of that.

You know, we had Stuart here in Topeka about a year ago.

Can you give us some tips on traveling with ASD?

Sure, planning ahead preparing those those are important.

But the feeling or the need to know what's coming next, know where we're going, you know where I'm going to sleep, having our favorite items with us.

So if there is something that is comforting, we take that along.

Familiar toys, social stories are extremely valuable to help children understand what's coming, that all of that takes the preparation ahead of time and planning to consider what what obstacles you might run into or what support you might need while you're gone.

And of course, you're going to go to places that are comfortable for your child.

Sure, if they're not able to handle large crowds, you want to go to someplace that has fewer people, maybe those kinds of things.

But planning is the number one.

It sounds good.

And Jack, did you have anything to add to that?

Luckily for our family, I love to plan things, So I will agree with Linda.

Planning was a huge part of this and we I don't want to plug anything, but we were very fortunate to go a couple of times to Disney World and they were wonderful with accommodations.

They really made a big effort to do that for all the people who needed them.

But planning and comfort is we've got tons of we've got tons of pictures on family vacations where Stuart's holding up a walkie talkie or a weather station or a watch or the things that he felt comfortable with.

But Stuart, did that that help with vacation and traveling?

That absolutely helped.

And it even continues to this day.

The other thing I would add what Linda and Sandy were saying about involving the family in the therapies, Stuart has a brother Justin who's about a year and a half younger.

And as they were growing up, Justin was always involved in his therapies.

And those things they did in therapy kind of made their way into play from there and extended into the day to day things we did as a family.

That's great.

So involving the family in the process helps tremendously.

Absolutely.

Yeah.

So, you know, we're self-advocacy, you know, I know that there are a lot of people who think those with autism are unable to do certain things.

They make they make assumptions.

So, you know, what would you recommend as far as advocacy goes?

How can we be how can we be better as businesses, as individuals, and helping those with autism to be able to thrive within the workforce and community?

Well, just knowledge is so helpful.

But that acceptance and and being able to consider that there are other options and not just one way of doing things and and asking for questions for support.

So what works best for you?

Those kinds of things.

Sure, sure.

Yeah.

If I can chime in, I think that the word acceptance is absolutely key with businesses and all sorts of of organizations.

We've absolutely had negative, negative experiences.

When somebody was afraid, it's usually fear.

You know, they're there, they don't know what autism is.

And they're either unable or unwilling to change things.

Right.

To for accommodations.

And for us, it was all about accommodations and we like to frequent places that are willing to be open minded and generous.

And that goes from the people to the organizations in the organizations as well.

Very good.

And Stuart, on your perspective, what would you say to other people?

And, you know, when if if you have someone with autism applying for a job, you know, what kind of advice would you give to them?

You know, help, I guess.

Self advocacy.

How how do you self advocate for yourself and what advice would you give to others to be more inclusive?

I would say what I do is I always try to work as hard as I can and whether it's on my instruments or with composing and arranging and to give people what they are looking for.

And also, I would say just to not give up and to continue to pursue what ever interest you have.

And I hope my music can encourage other people with ASD to not only people who are interested in music but from all walks of life.

And Val, if I can talk about the self advocacy as well, My wife and I well going to say my wife runs a business and a large business and she has made it her life's work to be inclusive and to work with the skills that people have.

And if the if more business owners and more more folks in charge of organizations, would see the value in that.

Because autism can be a gift.

It just can.

And if you if you work a little more to unwrap that gift, you can find something very special inside.

And yeah, it's just it's just important to do your best to explain who you are and say, Hey, I'm this person and I need a little accommodation or a little help.

And most people are willing to do that.

Most people, you know, we've found to be wonderful.

So, thank you so much, Jack.

And that's such a wonderful thought to end on.

And perfect.

You know, I thank you, Jack and Stuart and Susan and Sandy and Linda.

Thank you all so much for being here on IGI.

We appreciate their inspiration, all of their insightful knowledge.

So that's all the time we have for this episode.

If you have any comments or suggestions for future topics, send us an email at issues@ktwu.org.

If you would like to view this program again or any previous episodes of IGI, you can visit us online at watch.ktwu.org.

For IGI, I'm Val VanDerSluis.

Thank you so much for watching.

♪ Thank you so much for watching.

♪ This program is brought to you with support from the Lewis H. Humphreys Charitable Trust and from the friends of KTWU.