From delayed diagnosis to inequalities and available therapies, to a lack of respite care, we take a closer look during this autism awareness month.

It's some of the biggest challenges facing children and adults on the autism spectrum.

We'll talk to experts in this community and highlight local resources for families most in need.

Stay with us as we dive into Your South Florida.

Hi, I'm Pam Giganti.

Welcome to Your South Florida.

We're excited to be coming to you from our new studio in Boynton Beach.

Autism spectrum disorder, or ASD affects roughly one in 44, 8 year olds in the United States.

Though, there is no cure for ASD, early diagnosis and access to the right therapies and resources can make all the difference in the life of a trial and their family.

Autism affects people of all races and backgrounds, but the access to early quality care is not the same for people of color.

And while the latest data from the CDC shows a decline in racial and ethnic disparities, black children are still at a disadvantage when it comes to a timely and accurate autism diagnosis.

Now researchers from Florida Atlantic universities' Center for Autism and Related Disabilities or CARD are working to find out why.

Joining me now to share some of their findings is Dr. Torica Exume.

She is clinical support specialist for FAU CARD, and she's coordinating the Florida Developmental Disabilities Grant to study the underrepresenation of black children in autism.

And she joins us now with more on their findings.

Doctor, welcome, thank you for joining us on this very special and important program.

Thank you for having me.

So go ahead and tell us about FAU CARD.

What services does it provide and why is it so vital to helping children with ASD?

Yes, so here at FAU CARD, we have family members that will come in and meet with an assigned clinician who is an expert in ASD.

As well as other areas, such as special education, behavior analysis and social work.

The assigned clinician will meet with the family members and provide an overview of FAU CARD and the services and supports provided.

Then we registered a family and then we conduct a needs assessment with the family to develop a plan to meet those needs that the parents are expressing, whether it is training or consultation or technical assistance to the individual with ASD.

Additionally, the families will receive regular email blasts with events on parent trainings, professional trainings, and supports.

And all of these services and supports here at FAU CARD are offered at no cost to the individual and the family.

So as we have been discussing autism research, as we know has been going on for years now, but you say black children are diagnosed on average a year and a half later than white children, thus delaying their care.

So what's happening here?

Why is that occurring?

So what children meeting the ASD diagnostic criteria shows very low numbers as we can see.

Black children are 2.6 times more likely to receive a misdiagnosis than white children, 5.1 times more likely to receive a misdiagnosis of an adjustment order, or 2.4 times more likely to receive a misdiagnosis with conduct disorders.

And these issues are reoccurring due to the underrepresenation that may be consisting of black parents, experiencing cultural barriers and seeking ASD identification and treatment for their child from both healthcare and the educational community.

Pediatricians may also show a lack of understanding the red flags of ASD, or educators may show a lack of understanding the red flags as well and confusing the red flags with ASD, or for ASD with developmental delay, DD or emotional behavior disorder, EBD.

So doctor, you mentioned culture.

Talk about that for a moment about culture and how it affects diagnosis and care for these children.

ASD symptoms and signs are not that easily recognized by black parents.

There's also the fear of stigma within the black community.

When we look deeper into the black community, black parents face barriers and obtaining ASD identification and starting services for their child.

They are more likely to mistrust healthcare professionals and others aiding their care in identification process due to poor or filled client patient relationships, and the lack of cultural perspectives.

Black parents may be unaware of the delay of identification or initiation of treatment for their child until they have been in identification process for a lengthy period of time.

Black parents have voice the lack of acceptance of ASD identification within their own communities.

And there's also a lack of knowledge of ASD.

These barriers altogether held black parents back from receiving an ASD identification and agreeing to treatment for their child.

We know you and your team have conducted multiple interviews, you've talked to pediatricians, you've talked to providers and caretakers and the like, what have you discovered from those conversations?

What we mainly discovered is the lack of professional development, the lack of cultural understanding, the lack of teachers wanting be more involved with parents or parents wanted to be more involved with teachers and accepting that teachers are reporting certain concerns, but this has to be in a timely manner.

So for black children, usually it's a conduct disorder at an early age, not ASD red flags.

And this is the problem that we're having.

So because these are so-called conduct disorders or behavioral issues that the child is experiencing at a young age, they're not diagnosed with ASD till they're about nine years old.

So if we can improve our professional development trainings, improve developmental checklists, then we may be able to identify these signs in black children from an earlier age, such as three or four years old.

And that would make a significant difference.

So doctor, this research that you have been conducting is crucial to bridging the gaps that are out there when it comes to care for white children and children of color.

That's really the focus of this research.

So how much longer are you gonna be working on this?

So we were just renewed for another year.

So this will be our second year conducting research.

And during the second year, we're going to reach out to 11 more counties throughout the state of Florida.

So we're going to target north Florida, central Florida, and south Florida again.

And this time around, we're going to reach out to various populations, such as university professors, other psychologists, black teachers, black professionals, to get their input here.

So we can really dive in to the problem here and develop a solution, a one for all solution for the State of Florida.

Well, your work doctor is so important.

We thank you so much for joining us today and talking about it.

Thank you.

As a spectrum disorder, autism presents itself in a wide range of different ways from mild to severe.

Those with more severe autism are often non-verbal or have limited language skills and require continuous lifelong care.

But adequate resources for the severely autistic are not easy to find, often leaving caregivers with a sense of hopelessness and fear for their child's future.

Joining me now to shed some light on the issues facing the severe autism community is Stacey Hoaglund, President of the nonprofit Autism Society of Florida.

Stacy is also mom to an adult son Zach who's on the autism spectrum.

And Dina Ferrara, mom to 22 year old, Gina who has severe autism and is nonverbal.

Thank you ladies both for being with us.

It's a really important conversation we about to have, and we appreciate you being here.

So Stacy, I wanna start with you, walk us through some of the differences between someone with ASD who's considered mild versus severe.

Well, they call it a spectrum disorder because it is such a huge spectrum.

So at one end, of course, we have people who are college graduates who work for some Fortune 500 companies and are fairly independent.

And then at the other end of the spectrum, we may have people who are not able to verbally communicate, may suffer with a lot of sensory challenges from what you and I might think is the natural environment.

So a ceiling fan overhead, or a car driving by outside.

Some people with autism tell me that they take in everything.

So the sensory sort of stimulation that the rest of us can kind of filter out just naturally, a lot of people with autism cannot.

So they may also develop into behaviors because when you can't verbally communicate and nobody has maybe had the wisdom or the knowledge around you to give you another way to communicate, you're going to try to communicate with your behavior, 'cause you're gonna want to get the assistance that you need.

So then a lot of them resort to behaviors, and again, if they don't have of access to services or people who really know how to shape that behavior into effective communication, a family can be living with someone who's just struggling to get through every day through their behaviors.

Yeah.

Dina tell us about Gina, and when did you realize when she was a little girl that something wasn't quite right?

What was it like growing up with a nonverbal child?

It must have been very challenging.

Yes, it still is.

When she was a baby, she was hitting her milestones pretty much on target within the week of her year and crawling and talking and saying mommy and daddy.

And at around 15 months old, she regressed and her eye contact regressed significantly to where, we had been through different specialists from day one because she wasn't eating properly and gaining the weight they felt she should have, at the rate she should have.

They found basically nothing other than possibly like a little bit of reflux.

And at around age two, they sent us to a neurologist who basically spent a few minutes with her and says, oh, your daughter's probably autistic, join some parent groups and go from there.

That's what we were told.

And back then, there wasn't a lot of information about it.

I researched everything that I could, went to the Dan Marino Center.

And honestly, there was just not a lot of resources there trying to find a therapist, trying to find any way a speech therapist, behavioral, any of that, like it took years for us to actually start that process and find something, and once we did, we would end up losing them.

They would move on and then trying to find another one to get to know Gina.

It was just that constant circle.

And Stacy, that's kind of where you come in, I mean, tell us a little bit about the Autism Society of Florida and what the mission is at what point are you there to kind of jump in and help people out like Dina and Gina?

Well, I mean, really what we look to do is help improve the quality of life of every person who has autism, no matter where they happen to sit on the spectrum.

And we do that through a variety of different ways.

So probably our biggest thing that we focus on, which kind of goes to what we just heard Dina talking about is advocacy.

So we spend a lot of time doing legislative advocacy, we also advocate with the department of education because a lot of kids do not get what they need through their public school system.

So we are very strong advocates when it comes to ensuring that all children get whatever the services are that they need.

And in some instances, when it comes to autism, even the identification, because there are kids who go years without getting identified, who don't have that same experience that Dina had, where going to your neurologist and getting a diagnosis.

Some people go from doctor to doctor to doctor before they even get to that.

Even for myself, I mean, that was my first experience in advocacy for myself before I became an advocate was I had to advocate for my pediatrician to send me to someone because we kept sharing the concerns and it was, you know, don't compare him to his brother.

He's a boy, he'll develop later.

And the same thing, sadly, that I heard 25 years ago, families are still hearing today.

So one of the missions that we have is to hopefully, we're working on it, making a change there, we train a phenomenal amount of pediatricians on autism and early identification and teachers, first responders.

The last couple years, we've spent a lot of time and resources into educating those who are swimming instructors, because children with autism drown at a rate 160 times greater than typically developing children.

And so that has become a very big mission of ours.

We have major major gaps in services when it comes to people who need more support and many different organizations, including the Autism Society of Florida is advocating for higher pay rates for people who work, technically they work through the, it's Medicaid waiver.

So that's the agency for persons with disabilities and it's state funded, but those are the people that, especially those with more significant needs really depend upon.

And like Gina just said, being able to get someone and maintain them is a huge challenge because when they can move on for higher pay.

They'll do that.

I wanna bring Dina back into the conversation.

I mean, what were some of the most difficult times for you in finding the care for your daughter when there are these gaps that Stacy's talking about?

And it seems like pediatricians and providers aren't necessarily on the same page when it comes to autism or recognizing it.

So what were some of the biggest hurdles and challenges for you in trying to find the right care for your daughter?

Unfortunately, I'm still going through those struggles.

I think it's a never ending trial with these types of children, because just when you find someone, thankfully I found Stacy through her secretary actually, otherwise I don't know how I would've even known about advocacy and finding one.

And with her help, getting through the school system was huge.

I mean, we filed due process many times, but I was lucky enough to come across a former teacher of Gina's, who I literally begged to work with her privately.

But again, it is private pay.

So there, you have the other challenge for parents who can't afford to pay $150 an hour to a therapist to come into the home.

For me, my issues are always in the home, so bringing her to a facility for behaviors was basically a waste of time and money.

All of my behaviors with her are always in the home.

So, and again, I find them and she's willing to come, but she also has other clients.

So the most she could give me was one to two days a week, one to two hours, regardless of funds.

So that's the other challenge.

And additionally, my challenges have been in the evening at nighttime at bedtime.

Well, they're not gonna come at bedtime and stay with you through the night.

So what do you do when you're a single parent and you're struggling with these behaviors and you physically are fighting them, and you're trying to do what the behaviorists are telling you to do when they have a team of people?

In the school system, they've had a teacher, the behavior team and therapist, all there, four or five people to protect her from harming herself.

And I am one person trying to do it.

Stacy, how do we help somebody like Gina?

I mean, you just heard from her mom about, the issues are happening in the home.

She's a single parent.

I mean, that even makes me think about the future when a parent gets maybe too old to take care of their child, what happens then, are there quality housing options for people with severe ASD?

No, there's not.

And that is one of the things, there's actually gonna be something called an advocacy summit that's happening this summer.

And our focus is going to be on housing and housing options and how to secure affordable housing for people, not just with autism, but with developmental disabilities, because we are greatly lacking in this state with that, we do have group homes.

So we have group homes across the state.

Many people don't want to put their loved one in a group home, don't feel that they're safe.

And so there's a whole conversation we could have about that.

But you know, people wanna be able to have a home with support and somebody like Gina needs intensive support.

She needs ongoing support.

It's the same thing when we talk about employment.

And so these people can have a high quality of life.

They can have their own homes, they can have roommates and they can sort of have things established, but the services are not there.

The state funding is not there to assist people like Gina in being able to do that.

And I mean, if you talk to a group of parents, especially of children that are similar to Gina, you're gonna find that their biggest fear is that they die before their children die, because they worry what is going to happen?

Where is my child gonna go?

Who's gonna take care of them and what's the rest of their life gonna be like?

Yeah.

And it's a very sad situation that 1000s of people in this state, live like that every day.

And as parents, they try to do the best that they can while they're here in hopes that they're preparing their child who's moving into adulthood into a situation where they do have employment, they do have a place to live so that they don't have to worry so much about when they leave.

Yeah.

Dina, I wanna give you the last word on this, talk about how tough this is on families and what you believe families and single caretakers and caregivers such as yourself need the most right now.

Well, like Stacy said, I think we really need to focus on the increased, like intensive support for these kids after they exit the school system and support them in jobs and just to have that quality of life to be able to function in society, but they need that one-on-one continuous support.

It shouldn't end with the school system so that parents don't have to worry.

Basically just have that quality of life and not have to be put in a home where they're sedated and just left there.

Such an important conversation to have, so much more work still needs to be done.

Stacy and Dina, thank you so much for joining us, we really appreciate it.

Thank you.

You're very welcome.

For generations, the YMCA of South Florida has been dedicated to serving children and families in Miami-Dade and Broward Counties by offering programs to underserved communities at no or low cost.

But you may not have known that the Y is the largest provider of special needs programs in South Florida.

They give hope to family is in the autism community by providing resources they so desperately need.

Here at the YMCA South Florida, our special needs programs is here to serve those with a variety abilities.

Autism is the most prevalent.

Over 60% of our students have a diagnosis of autism.

We're very fortunate to be funded by Children's Services Council, the City of Pembroke Pines and Broward County Public Schools.

With their support, we've been able to grow from 90 students to serving or 500 youth each year.

And we're able to provide programming at 20 locations throughout Broward County.

And then over the summer, we're able to serve seven locations.

This is where students learn project based learning, go on field trips, learning to swim and do a variety of activities that are fun and exciting, and to be able to be with their peers.

It is the best kept secret in Broward County.

Our programs are a much needed part of parents and children's lives.

Kids can come into our program at four, and a lot of them stay with us through high school and they can be at our program till 22.

We do also have an program where the adults can come in and it is a recreational program for the adults.

No age limit, where they feel like they're part of something and they feel like they're part of the why.

They work on social skills, functional living skills, daily living skills.

They have peers there, they have friendships there.

We do cooking, we do a lot of art activities, we do Y fit.

So that they get to exercise every day and they just so depend on it.

Our programs are able to provide more intensive services.

So we're able to provide smaller ratios and to be able to give students the help they need so that they could be successful alongside their typical peers.

We're able to give that closer support, hands on experience, hand in hand to guide our students to be able to be successful.

I'm Chandra Powell, and my son is Terrence Junior.

And Terrence was diagnosed with autism spectrum disorder when he was three years old.

They call it loss of skill, where he was normally functioning, and then all of a sudden, he reverted back to the babble.

Not really speaking, not quite understanding a shoe is a shoe, a pencil is a pencil, and it was just quite disturbing.

And even now, he still kind of struggles a little bit, but he's definitely developed since then.

With the Most Program, it's an afters school program where he's involved with some general academics, a lot of arts and crafts, on special days he does field trips.

The main reason right now that I believe that we really started him on is the aftercare program.

Just like any 21st century family, mom and dad both works.

So by the time we get off from work, somebody is there caring for him because he is non-verbal.

They specialize with the different skills and techniques to help him express himself because he does get frustrated when it comes to trying to express his needs and his wants, and they are trained and they help us and we feel safe that they're there.

You know, a lot of parents when they come to the Y, they've already exhausted many services and they're just, once they come to the Y, we're able to hold their hand and to connect them to services and after school programming, recreational sports and for their child to just be a child again, because we're able to connect with those resources for them, our staff are trained and they're able to work closely so that those connections can be made, and they feel like a sense of belonging.

The adapt sports program is actually a City of Pembroke Pine's funded program for the special needs community.

And it's pretty much a program where we provide services where the special needs population can really have an outlet to participate in physical activity and social interaction where kids and families can experience so many activities that they wouldn't normally get in a typical setting.

We offer our Swim Buddies program.

We offer Through the City Pembroke Pines and Challenger Baseball, it's a baseball program.

We also offer different programs through special Olympics, whether it's flag football, tennis, we also offer aquatics program.

And then we offer our special Olympics basketball.

These programs are adapted in various ways, it depends on the diagnosis and the needs of the participants.

My name's Kevin Brown and my son, Eric is involved in the adaptive sports program at YMCA.

We really noticed that Eric had started to speak a lot less than he had previously, and based on that, he started to inquire with pediatricians and had him assessed and he was diagnosed with the autism spectrum disorder.

Eric enrolled into Swim Buddies, which is an adaptive sports program focused on initial swimming lessons.

And the reason it's unique is that the why kind of combines the infrastructure that it already has in place like you would imagine is that any why, be it workout basketball, an aquatic facility, but they're able to pair that with actually certified instructors that are very comfortable working with children with special needs.

And that allows parents to actually have a place where they can know that their child's gonna be both having a great time, but also safe.

And you don't, you're able to essentially to really just enjoy the experience.

I mean, there's nothing better than that.

I mean, it's why you're a father, it's why you're a mother it's to see your child grow, to develop, seeing them to be comfortable and also for everyone to be comfortable around them.

And for it not to be an environment where you have to have your guard up, because, you know, as a parent, I spend a lot of my day on defense, essentially.

And to be able to put your shield down for a moment.

Sure feels great.

And that's not something that it's easily available to a parent with special needs.

And that's really helped both me and my wife to know that we have this kind of program to bring our son to, and it's completely safe, moves at the speed our child is ready to, and everyone's happy to see us every time.

It's really been a great experience involved.

[female speaker] I'm very fortunate to be part of this amazing team.

A lot of our staff, our seasoned staff, they learn how to work with those, with a variety abilities and to provide a loving, nurturing experience for our students.

When the kids graduate, we get all emotional.

We can't believe they're graduating.

When their functional level increases, we get all emotional.

I've had kids create art projects and just show me their talents.

And I really try to encourage them.

And that gets me emotional.

When they say miss Susan, that gets me emotional.

It's wonderful to wake up in the morning and recognize that the goal for today is to make an impact in a family's life today.

And that's one of the things that you can't replace with any program.

So working with our population is gratifying.

It's definitely self-motivating, and it's also gave me the opportunity to make so many new friends with so many families.

You know, I have an honor to serve our families and our youth.

I don't do it for any more than to make sure that a child is smiling and having a good time because they should be able to participate just like everybody else.

And for you to come into our program and get to see his peers and get excited to be there for the day and not wanna leave at the end of the day, we know we did our job.

We'll have more information and resources about today's program on our Facebook and Twitter @YourSouthFL.

We'll see you next time.

Thanks for watching.