- Just ahead on Black Issues Forum, autism awareness is growing, but are all communities receiving the support they need?

We're talking about early signs, early intervention, and why timely support can make a life-changing difference for children on the spectrum.

We're breaking down what families, teachers, and communities need to know.

Coming up next, stay with us.

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(upbeat music) ♪ - Welcome to Black Issues Forum, I'm Kenia Thompson.

Child development is often thought of in terms of milestones, like first words, first steps, first days of school, but for some families, the journey doesn't follow a traditional timeline.

Autism spectrum disorder affects individuals' communication, interactions, and the experience - and how they experience the world around them.

And while awareness has grown, there are still gaps, especially in black communities, when it comes to early diagnosis, access to services, and even acceptance.

Our guests are here to talk about what early support looks like, why it matters, and how families can be better equipped, not just to navigate autism, but to celebrate their children fully.

Joining me now are Nicole Harris, Autism Resource and Support Group Specialist with the Autism Society of North Carolina, along with Felicia Williams-Brown, Community Engagement Specialist and Educator with the Autism Society of North Carolina.

Additionally, she is the founder of Pioneering Change Consulting, where they provide online courses and a support group specifically for mothers of children with autism.

And both Nicole and Felicia are parents of children with autism.

Welcome to the show.

- Thank you.

- Thank you.

- Thanks for having us.

- Of course, such great work that the Autism Society does.

I've followed along very closely my brother is autistic, so this is kind of close to my heart as well.

Felicia, I wanna start with you.

In perusing the website and data, 40,000 plus individuals and their families receive direct services annually here in North Carolina.

I kinda wanted to break down, what does that number actually represent, and what are you seeing across the state?

- Yeah, well, there are two things to consider.

North Carolina has about 186,000 people with autism.

The data says that 67% of them actually receive those direct services that you're talking about.

But then, based on the CDC's prevalence, one of 31, there are more people who are not getting services.

So those numbers from our agency, the Autism Society are for people who are officially diagnosed and people who are engaging in services.

But there's a huge number that are not diagnosed and that are not engaging in services.

So when you look at that number of the 40,000 that you speak of, it's approximately 11%.

- Oh, wow.

- Yeah.

- So when you say diagnosed, that is diagnosed through a service provider, a psychiatrist, psychologist, and then what are those direct services that the society offers?

- Yeah, so most of the services our children receive, early intervention, and then all throughout is speech therapy, occupational therapy, ABA therapy, physical therapy.

Some parents receive coaching and modeling.

And then there's a whole lot of social supports, too, that are offered 'cause our kids suffer with that, too.

- So we hear about autism, then we hear about developmental disabilities.

- Yes.

- Is there a connection?

And if so, what is the connection, but what are the differences?

- Absolutely, so this is something I didn't know early on.

I was actually chatting with Nicole about this.

So autism is a developmental disability, separate from any other developmental disability like intellectual disability, ADHD, cerebral palsy, it's its own, it stands on its own.

How it's connected is a lot, I would say 38% of people with autism, they also receive a diagnosis of intellectual developmental disabilities.

And one thing I wanted to point out here for our black communities, of that 38% who receive that intellectual developmental disability diagnosis, over 50% of them are black kids.

And the CDC has actually talked about how that's a despairing number, and they're trying to figure out why more of our black kids are getting this dual diagnosis.

It's not that it's not necessarily appropriate, but the way that you determine diagnosis is from observation, and there could be some biases there.

And so there's concern about that.

- There's concern, Nicole, I wanna bring you in.

Not only do you work with Felicia at the society, but both of you, as mentioned before, are parents.

I wanna start with you, Nicole, and what were some of your observations early on that made you kind of think, well, okay, something maybe needed to look into here?

- So I have three teenagers now who are on the spectrum.

My son was the first to get diagnosed.

And at the time, I had a childcare center in my home, and it was made up of basically my friend's children.

We all got married at the same time, all had kids at the same time.

So I had early childhood experience from my mother working in the field, and I decided to open a daycare.

And so when my son was around two, everyone else was around two, right?

And so I'm noticing him not really giving social engagement with his friends.

And they were all friends, but he acted differently towards them.

He was not engaging with them.

When they were playing with toys, like one of my little kiddos was playing with a truck, but my son Charles was spinning the wheel on the truck instead of pushing the truck and engaging him to play with him with the truck.

He also had some issues with feeding.

I nursed my children, and nursing was difficult for him.

Eating solid foods became a real issue to the point where he actually received feeding therapy before he got his autism diagnosis because he wasn't able to chew properly, and I was scared about him choking.

So there was a lot of red flags, if you will, developmental milestones that he was not hitting.

I had no idea about what autism was or anything like that.

I had no idea about that at all.

- And how old is he, if you don't mind me asking?

- He's 17, he just turned 17 on March 5th.

Yeah, and so he's doing well.

He's been in services, intervention, since he was three years old, and public school, early intervention, since he was three.

Early on, it was those things, but I had something literally to compare to right in my home whereas another parent might not have had, it might have come a little bit later, a little bit longer to see those things.

But yeah, so that was my experience.

My girls, I was considered level one.

We used to say Asperger's years ago, but that's no longer a term now that we use, but they received very late diagnosis, very, very late, because they had good eye contact and they had some intellectual abilities and everything like that.

So different stories for all of my kids.

- Yeah, Felicia, would you mind sharing your story with your son?

- Yeah, absolutely.

So my son is 17 too.

- Okay.

- And our story, a little different from Nicole's because Kevin is his name, is my first biological son.

And so I had, my husband and I had adopted boys, but they were four and five when we adopted them.

So we skipped like that developmental stage between birth and three.

And so we didn't know, but we had a great pediatrician, which I know is not always the case for our families.

And my pediatrician kept saying he should be reaching these milestones.

He should be saying this and he should be doing this.

And I was like, I don't think he's got that many words.

I don't think he's doing this or that.

And so that's when he actually referred us to the CDSA, which is an agency that provides free early intervention for parents who are noticing signs for their children.

He did the right thing.

A lot of pediatricians might not know to do that.

And that's how we got connected.

So for about a year, my son was receiving those early intervention services.

And then finally we got our autism diagnosis.

So he was two when he got his diagnosis.

And during that time, like Nicole and I are the same age and our sons are the same age.

And at that time, there wasn't a lot of autism awareness.

And especially in our black families, there weren't a lot of people that we could connect with or model.

So during that time for us, me and my husband, it was a lot of educating people.

It was a lot of learning yourself.

It was a lot of exploring.

- And what I found in my own experience, there's so much information out there, but you don't know kind of where to go, where to start.

- Exactly.

- And I'll remind you, so my brother's 39, will be 40.

So if you wanna think, 30 plus years ago, for sure.

The landscape was drastically different.

It wasn't a label or a term that you wanted to connect with or associate with.

There was a lot of confusion around it, lack of understanding.

How would you say, and I'll pivot this to you, Nicole, and feel free to add, how has support and resource grown over these last few decades?

- They've grown a lot.

A lot more awareness, as Felicia mentioned, right?

A lot more reliable testing providers.

Some of the kind of core issues, particularly with black families, and Felicia mentioned pediatricians and doctors.

There are studies that out there, solid studies that suggest that African American families, for a lot of them, will not get diagnosis as soon as they should, because they may not have a provider who looks like them and who will recognize the autism or recognize a concern.

They may challenge the parent's parenting.

They may challenge the parent's social economic background as to reasons why the child may have these certain behaviors, right?

And so, that's a biggie.

- And that leads to self-second guessing, right?

As a parent.

- Yeah, yeah.

- Well, what am I doing wrong, baby?

- Exactly.

- 'Cause there's nothing going on.

- Right, so when you start off like that, start off not knowing, unsure.

You go to a provider that you can trust, and then you don't feel like they're hearing you or they may be giving you advice that doesn't do you any good for you as far as trying to support your child.

You start off not really knowing where to go, how to navigate services.

If you do get that diagnosis, and it may be, we won't say too late, but it should have been way before, you're kind of thrusted into, where should I look, who should I call?

If I call them, is there a wait list, right?

And so, with the Autism Society, we have what's called Autism Resource Specialists, and they cover every county of the state.

The Autism Society is a statewide organization, and so, any parent, whether you have concerns or you already have the diagnosis, you can call and ask to speak to an Autism Resource Specialist.

A lot of the calls that we get are from parents wondering should they go for testing, and if they do, where can they go?

How long is the wait list?

Because they've heard it could take a year, six months, whatever, to actually get the testing done.

- So let's pause there, Felicia, if you can chime in on this.

What does testing look like, and then how do you, as a parent, advocate?

So let's say we are in the doctor's office, and the doctor's kinda trying to put blame on the parenting or the economic status of the family.

How do we challenge that, and then what does testing look like?

- Absolutely, so I would say to challenge that is to go to an advocacy agency.

You can also get a second opinion, but I would say an advocacy agency like the Autism Society, Family Support Network, TEACH, places that can affirm what you're seeing, what you're experiencing.

A lot of times our kids are misdiagnosed, and that's why they get a late diagnosis.

It's usually labeled as behavioral or some other type of developmental disability when it's actually autism.

And so the parents are feeling uncomfortable because they're having professionals giving them pushback, and then they're seeing these things with their kids, and then sometimes in our community, we're getting pushback too.

We're being told, "That child just need a spankin'," or, "That child, you just need to make them eat that.

"When we were growing up, "you just ate what was on the table," kind of thing.

And so you're getting squeezed both ways, and so I encourage people, trust your gut, go to those agencies, come to the Autism Society.

Our resource specialists, they're free.

It's not a fee for that.

And they are linked to the community.

They know the resources in all the areas because they all serve certain regions, and they can actually connect you to your next steps.

- And that testing, what does that look like, and are the tests free?

- Well, they're not free, no.

- They're not free?

- Unless they go through CDSA.

If you go through CDSA-- - Can you remind us again what CDSA is?

- It's Child Development Services.

- Okay, yeah.

- If you go, and then they're also connected with North Carolina Early Toddler Program.

- With the public schools.

- Yeah, yeah, and so if you go through them, which they only serve ages birth to three, so if your child is within that range, they will provide those services for free.

Beyond that, then you would have to look at your insurance.

Either you're covered by Medicaid or your private insurance.

And that also determines where you go to get testing.

And let's not even talk about the wait list because now that we have more families who are at least willing to come forward with their children, we don't have enough providers to provide these testing.

- And the testing looks like it could be a developmental pediatrician, it could be a psychologist, I'm trying to think of other forms.

- A behavioral specialist.

- Behavioral specialist, it has to be someone that is specialized, certified, all those things to be able to do the proper diagnostics and make the assessments for the autism diagnosis.

A lot of parents who may have gotten a diagnosis or an assessment done through public school, they may see that and think that that is a medical formal diagnosis.

It categorizes the student as being autistic and therefore you can go into the services needed for school, but that is not a medical formal diagnosis.

It has to be done by a psychologist or a developmental pediatrician.

And like Felicia's saying, the wait list.

We traveled to Wilmington for my youngest daughter's diagnosis and before then, the schools missed it.

I've been to a number of places for my girls in particular thinking that oh, I probably will get an autism diagnosis once this is done, from that psychological evaluation.

And it would be everything but autism.

You know what I mean?

- Yeah.

- I've been noticing that there just seems to be an influx of autism diagnosis.

It just seems like almost everybody's got some sort of neurodivergent label.

I'd love to hear your thoughts on that, but then I'd also love to talk about when you do receive that diagnosis, how do you not let the child feel like now I've got this label, this thing that now follows me?

- Yeah.

- That's a biggie.

- It is.

- Neurodivergent sees, or you know, how you would say that.

For our children, as best as I can, I have been assuring them that it's all right, that everyone has some sort of challenge of some way, shape, or form, whether it is from a formal diagnosis of something or just something that is a challenge for them in their lives, right?

And so what this autism diagnosis does, it identifies how you need to be supported and how someone should support you in school, in church, in the grocery store, even between your parents.

I'm not autistic.

- Family reunions.

- Yeah, all of that.

All the things that black families will be.

- Yeah, cookouts.

- All that, yeah.

It's where you say, okay, you're a neurodivergent.

It matters, right?

It's to be respected.

There's no shame to it, you know?

And that's thinking that's not always been in place, particularly in the black community.

It's not how we think.

We are a people that have gone through so much.

So the pride of what we have in our culture is being strong.

But with autism diagnosis, sometimes that looks like a weakness.

So you may see a family, a parent, who's really struggling with just even going forth and getting the testing, or they got the testing and the diagnosis and they can't even say the word autism because it feels like weakness to a culture, to a people who we pride ourselves on going through and being strong as we should, right?

The downside of that is stigma sometimes when it comes to an individual who is autistic, you know, in different cultures in the black diaspora.

So, you know, our charge to ourselves is to constantly reassure the confidence and the authenticity of our children, right?

To say that, yes, you may have a challenge that may keep you from participating in certain things in life, but you have some enormous strengths, talents, and uniquenesses that autism brings to you.

- I was gonna say.

- Yeah, those things.

So that's the language that I'm, you know, I'm still working on it.

That's the language that I'm trying to use and that in the spaces that we are, we're grateful to be able to work for the Autism Society because it gives us the platform to say those things in our communities amongst people who are not black and African American to say this is not, you know, something intellectual.

This is not a weakness of our culture, right?

Like anybody else's culture, it's not.

- One thing to add to that I've noticed is that there's some areas that they're so exceptionally smart in, right?

- For sure.

- And it's a beautiful thing to see because there's a passion.

You see there's a connection to whatever they've honed in on.

- Yeah.

- That's amazing.

- It does.

- Felicia, I wanna, feel free to add, but then I also wanna get to early signs.

We sprinkled some of those throughout the conversation, - Yeah, yeah we did.

- but I wanna specifically talk about early signs, but go ahead.

- Yes.

So just to piggyback on what you guys were just talking about and what you shared about the brilliance, you know, I want, again, people to understand that autism doesn't mean intellectual disability, right?

So you'll see people who are brilliant and the way we don't serve them well is because usually they're not behaviors, right?

That will cause you to question.

Like they get along well in school, you know, they might have anxiety, but they're having social issues.

They're academically brilliant, but they're not having those behaviors that people typically assume, okay, something's wrong.

And those kids, the level ones, they are the ones who usually get those late diagnosis because of that.

And so they struggle too.

It's like, you know, they know how to do those things, but when it comes to social engagement, understanding social cues, they don't get the support they need and they struggle too.

- The mental health, - Yes.

- the mental health struggles that come with someone who is, like Felicia mentioned, man, you know, the rates of suicide among autistic children and adults who have what you would say a mild form of autism or level one autism, the rates keep increasing.

- Yeah.

- And I mean, that there is truly heartbreaking.

- It is heartbreaking.

Let's go ahead and identify those signs 'cause I wanna focus on that zero to three, but then I also wanna focus on late stage.

- Yes, absolutely.

So usually the signs are, if a child is not given eye contact, if their speech is delayed, they're not talking, if they have sensory sensitivities, like to sound, to food textures, to touch, those are indicators.

And then if they're just not developing, they're not reaching those benchmarks, those are typically signs.

And then another sign is repetitive behaviors.

So like they play differently with the toys, they might say phrases over and over or words over and over, and very rigid about routine.

Like those are examples of signs.

If you're seeing that, you know, that's something to explore.

- I know like for some of the signs, like looking back now that I miss, particularly in Charles, who does present autism more than his sisters, is that when I would try to feed him or hold him, he would arch his back 'cause he did not actually like to be held.

It was when he had a sensitivity to touch, right?

And still to this day, he does not enjoy giving you a hug, right?

He'll appease you, but you're not gonna get an embrace from him because it feels uncomfortable.

So as a baby, trying to nurse him, right?

He would arch his back and he would do certain things like that.

Just something that I didn't recognize back then.

And then other things is too, is when you get into, we used to say terrible twos, right?

Those toddler years or whatever.

We expect some tantrums, we expect that.

But sometimes in autism, they're like magnetic.

Like they're just like - whoa - where it's almost jarring for the parent to see a child that literally cannot stop crying.

Or is having what we used to call a tantrum, but really it was actually a meltdown.

It was they were overstimulated.

It was that they were, and they didn't have the language because of their young age to express, these lights are too loud or they're too bright.

Something's hurting my ears.

Something smells off.

I don't like that.

My sister's always touching me.

It actually hurts, right?

When you're a toddler, and you can't articulate that.

So it looks like tantrums all day, but it is just meltdowns.

It's emotional meltdowns and meltdowns from that aversion to some of the sensory things that we're talking about.

- A couple minutes, and I just wanna make sure that we address the late stage because we see some folks maybe at eight, 10, but then we also see adults now being diagnosed with autism.

Because you have late stage experience, share some of those signs.

- It's validating for someone who gets a late diagnosis, and I'm speaking as someone who's not autistic.

So just from stories that I hear from adults, it's validating because they went through literally their whole lives feeling out of place, not feeling understood, maybe even being bullied by even friends or family because they were different.

So for someone to get that late diagnosis, it's a mixture of feelings.

If you're a parent and you have a child who's also autistic, you may feel guilt because as we said, you've passed it down to your child, right?

And so there's a mixture of feelings that someone with late diagnosis in adulthood would experience.

A lot of times there may be anger towards their parents.

They have to go through some forgiving because their parents just didn't know.

- What are some of the signs?

'Cause I wanna make sure we-- - So for adults, they may have a hard time keeping a job.

Social skills that are required to hold down a job.

They may not have been able to finish certain things that an adult would.

Finish college or finish high school.

Land a job and keep a job.

Form relationships with the opposite sex or however that is.

Keep the relationship, right?

Because all of those things in your life involve you having some social skills and involve you having what we call-- - Self-regulating skills.

- Self-regulating, yeah.

And what we call executive functioning.

And that is you being able to complete tasks, to know the order of tasks.

And for someone that, those are all issues that we see on a regular basis.

- Very good tips.

We are at the end of our time.

We'll pop up the website one more time 'cause folks can go there for support and other resources.

Nicole Harris, Felicia-- - Thank you so much.

- Williams-Brown, thank you both so much.

- Thank you.

- Thank you.

And I thank you for watching.

If you want more content like this, we invite you to engage with us on Instagram using the hashtag #BlackIssuesForum.

You can also find our full episodes on pbsnc.org/blackissuesforum and on the PBS Video app.

I'm Kenia Thompson.

I'll see you next time.

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