From Diagnosis to Advocacy with Whitney Price

In this week's episode of The Autism Mums Podcast we welcome Whitney Price, founder of Unpuzzled Parents Connect, to the show. Whitney shares the emotional and financial struggles she and her husband faced navigating early signs of autism with their son, Connor, the pandemic’s impact on access to services, and the turning point that led her to create a vital support network for families like hers.

About Whitney Price

Whitney Price is a passionate advocate, nonprofit leader, and devoted mother committed to supporting families of children with autism and intellectual and developmental disabilities (IDD). As the Founder and Executive Director of UnPuzzled Parents Connect, Whitney has dedicated her life to building a community where families no longer feel isolated or overwhelmed—but instead empowered, informed, and supported.

Her journey began as a mother navigating the complex world of special needs parenting, an experience that opened her eyes to the gaps in support, understanding, and resources that many caregivers face—especially in rural communities like those across West Virginia. Determined to make a difference, Whitney created UnPuzzled Parents Connect, a grassroots organization that has grown into a trusted statewide resource hub. Under her leadership, the nonprofit now offers programs like Coffee and Connections support groups, The Listening Room therapy and counseling sessions, Knowledge is Power workshops, and the newly launched Inclusion initiative, which brings disability awareness into schools.

Through her podcast Get UnPuzzled and community outreach efforts, Whitney amplifies the voices of families, facilitates critical conversations around disability inclusion, and creates platforms for meaningful change. She is also a sought-after speaker and has been featured on platforms like the Adjusting the Sails podcast.

Whitney’s leadership is rooted in lived experience, deep empathy, and a fierce commitment to advocacy. Whether she’s connecting families over coffee, organizing large-scale events, or working one-on-one with caregivers, her mission remains clear: to walk alongside families and help them feel seen, heard, and unpuzzled.

Key Takeaways

• The early signs of Whitney's son Connor’s autism and the complexities of diagnosis
• Why common autism 'red flags' didn’t apply
• Navigating grief, denial, and self-isolation
• The financial burden of therapies and the life-changing waiver program
• How a small support group grew into West Virginia’s largest autism family network
• Mental health strategies for parents and the power of shared experience

Mentioned in This Episode

Coffee and Connections – Community meetups for parents and caregivers

The Listening Room – A safe, supportive space for sharing stories and experiences

West Virginia Medicaid Waiver Program – A disability-based funding program that helped Whitney access therapy services

ABA Therapy (Applied Behavior Analysis) – Intensive behavioral therapy used in early intervention

Birth to Three Program – Early intervention service in West Virginia supporting children under age three

Classroom Inclusion Kits – Educational tools distributed to schools to promote autism understanding and kindness year-round

Autism Level 3 Diagnosis – A diagnostic level indicating high support needs

Therapies Mentioned: Speech, Occupational, Physical, Behavior, ABA

Quote

Nothing feels better than to be able to call another parent and say, ‘Oh gosh, you're not gonna believe the day that I've had.’ And then on the other line going, ‘Oh yeah, we did too.’

Connect with Whitney Price

Website - https://www.unpuzzledparentsconnect.com/

Facebook Group - https://www.facebook.com/groups/unpuzzledparentsconnectsupportgroup/

Facebook Page - https://www.facebook.com/p/Unpuzzled-Parents-Connect-61568330603127/

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Transcript

Episode 10 - TAM Podcast - Whitney Price

[00:00:00]

Hello and welcome to the Autism Mums podcast. I'm Victoria. And

I'm Natalie. We are two sisters raising autistic children who know the joy, the

challenges, and the everyday moments. This is a supportive space for honest

conversations, practical tips, shared strength and expert advice. Whether you

are celebrating a win, surviving a meltdown, or just trying to make it through

the day, we are right here with you.

Join us as we share the ups, the downs, and everything in

between parenting autistic children.

Victoria Bennion:

We're so pleased to welcome to the podcast Whitney Price. The founder and

executive director of UNP Puzzled Parents Connect as a passionate advocate and

devoted Mother

Whitney is committed to [00:01:00]

supporting families of children with autism and developmental disabilities. Her

journey began as a mother navigating the complexities of special needs

parenting, which inspired her to create a grassroots organization that empowers

families, particularly in rural communities like West Virginia, through

initiatives like Coffee and Connections, and the listening room.

Whitney Fosters community, amplifies voices and drives

meaningful change. Welcome to the podcast, Whitney. Can you talk about where your journey began?

Whitney Price: My

name is Whitney Price and I am the founder of Un Puzzled Parents Connect and

our journey started. I would say much like a lot of the other parents that I've

spoke with that have a child that's on the spectrum. Connor is my little boy.

He is almost seven now, and he was diagnosed at the age of two.

With autism level three in the states where I am from in West

Virginia, we still [00:02:00] diagnose off of

the levels. So it's typical for a provider to give between a level one and

level three diagnosis. Some of them will even say profound autism, and we

started noticing. Back in 2020 when the pandemic had just started, that Connor

was a little bit delayed in his speech.

And for our region we have what's called birth to three, where

different providers will come in between when the child is born up until the

age of three. And if they're not hitting these milestones. Then they will

suggest that a speech therapist or maybe an occupational therapist, physical

therapist, anywhere that they are delayed in hitting the milestones.

They will suggest that a therapist come in the homes and work

with the child or infant, and we had Connor in daycare at the time. And they

had let us know that someone came in to evaluate the children and that Connor [00:03:00] qualified based off of a speech delay. And

Connor's our only child, so we are also first time parents.

We didn't think much of it, and I. I brushed it off and said

he's a little bit behind, but he'll catch up. He's only two, he's still a baby.

And he was typical in the sense that he was still playing with toys. He was

still calling for us in the way that he would still want to be picked up and

just doing a lot of actions that a typical toddler would do.

So we brushed a lot of things off at the beginning and when the

pandemic happened, the world was completely shut down. We had a lot of time to

spend with Connor, and one of the silver linings was, I called that agency and

said, okay, what can I do? Can you send me some information? Can you send me a

book, send me something on maybe helping him speak or getting him to talk?

So they immediately set us up with a speech therapist. [00:04:00] Everything was virtual at the time. And we

just started meeting with them every single week to go over the different

activities that we could do with Connor. We had 120 days to spend with Connor

when we were completely shut down. So I was home from work for that amount of

time and thought, okay, something is starting to develop new behaviors

developed, but they weren't the typical Google.

Research that you would do. They were not the typical red flags

that you would see. Connor had great eye contact. He responded to his name.

He'd point, he would cry and call for us in his own way, but he also. Was a

jumper. So Connor was constantly active, wanting to seek sensory input. We

didn't know that or what that was at the time.

We just knew that he was a very active baby, didn't like to

sleep, [00:05:00] and we brushed a lot of

things off. But new behavior started to develop for Connor. So he also started

to throw a lot . He started to spin the wheels on the car and obsessively flip

things over and want to play with things in his own way.

It wasn't running a car on a track, it was flipping it over,

running the wheels, and then jumping until they stopped. And at first that

seems adorable, and we took thousands of videos of Connor doing the same

repetitive movements. We would even jump with him. We would make games out of

it, not realizing that I.

We were just stemming to one of the activities that he enjoyed.

So occupational therapy started to happen and they came in our home and started

to say this might be a sign. But he's doing so well, he's so affectionate. All

of these other typical signs that you would see for autism were not registering

for Connor.

So [00:06:00] again, six months

we brushed it off. New developing behavior started to happen. He still was not

speaking. At one point they thought that he was deaf, but he would listen to

sounds or different devices that were loud and put it up to his ear. So we thought,

okay, maybe because he had reoccurring ear infections that the tubes had fallen

out.

We take him back to our pediatrician, we get him set up to have

new tubes put in. Six months later, he's still not speaking. So at that point

we said, okay, let's just do one more evaluation with the psychologist. Have

her come in and we'll see what happens. And she did. It was a three hour long

evaluation.

We my husband and I were there as well. She came into the home.

He was the first person outside of the home other than his babysitter that he

had seen since the pandemic happened. So six months he was at home in [00:07:00] isolation, but he's still little. He was

two and a half. We didn't think much of it.

We thought he does have lack of playing with peers. Maybe

that's why he is not realizing how to properly play with these toys and go

through these different emotions. So she comes in, he immediately clicks with

her. He's sitting on her lap. He is trying to engage, and I'm thinking, she's

gonna think we're nuts.

She's gonna think you're overreacting. You are first time

parents that are just nervous. He's just a little speech delayed. So we are

going through, she is asking us thousands of questions, how my pregnancy went,

if he's on medication, if I'm on medication, if my husband's family's, any

background with them, with mine.

And the whole time, he is being phenomenal. He's pointing to

the colors that she's asking the numbers, the animals. He's getting everything

right. He knew his ABCs numbers up to 10. She's [00:08:00]

complimenting how smart he is. My husband and I are just smiling yeah, he is so

smart. He's just not speaking yet.

We get through the evaluation and she starts reading off these

numbers on the chart and she says he has global developmental delay in these

different quadrants of he is behind in social emotional, he is behind in speech

and these different developments that she's looking at. And she said, has

anybody talked to you guys about autism?

I said that's why you're here, right? I thought maybe, but I

said, what? What about the colors and the numbers? She said those are great,

and he is still advanced in some areas right here. She said, but on this chart

where. He is delayed 50%, 25% here, 60% here. And the list just kept growing.

And she said, we this is an autism [00:09:00]

diagnosis. I said how certain are you that it's an like, how sure, how long

have you been doing this? She said, almost 10 years. And at that point my heart

sank. 'cause I was really hoping that she would say I just started, or this is

my gut feeling.

Or that she was wrong in some way. So we had our grieving

moment. And then we went through a process of, no, she's wrong. We went through

the every emotion that a parent goes through in the quadrants of grief, anger,

denial self-isolation. And we thought, okay, so what do we do now? And she said

you need to try these therapies.

Speech occupational. Physical therapy, behavior therapy, and

ABA therapy, which is applied behavior analysis. We have that in the states and

it's very hard to find in my state in West [00:10:00]

Virginia, it is like a unicorn so at that point we were going back to work. The

world was slowly opening up again and we were stuck because Connor was about

ready to turn three.

So we're saying, okay, now what do we do? The silver lining

was, I had a brand new ABA therapy center that opened up right beside the

dealership that I was working at. And I'm like, okay. So we call, we get him

in. He's the first patient there, so they start seeing him full-time. Connor

was going six hours a day, five days a week.

Very intensive therapy. We were also booking him appointments

with different evaluators, a neurologist, a psychologist from our WVU Medical

Institute, which is the best in the state. We wanted to make sure he was

autistic and that we weren't wrong, she wasn't wrong. And of course, they gave

us another level three diagnosis.

During that whole process, [00:11:00]

we were told by. Coworkers, managers, family, don't label the baby. Don't label

him. Don't do anything that's gonna set him apart and make him stand out from

the crowd. Just do what you can because he is gonna grow out of it. It's gonna

be fine. Your first time parents, he's just a little delayed.

You were delayed, your husband was delayed. Everybody is just

learning at their own pace, so don't label this baby. So my husband and I spent

about a year in isolation. We didn't talk about it, we just went with it. I had

to ask my job to make schedule adjustments so that I could take him back and

forth to therapy.

And drive 45 minutes one way and back, and we were both working

six days a week to make up for the time and long lunches that we had to do

while we were driving back and forth. But we thought he's going to progress. He

[00:12:00] started to say a few words here and

there, and we thought what's gonna take off eventually?

He's starting to talk. Maybe it's just not his time yet. But

when they hit three years old and they're around different three year olds or

other three-year-olds, you start to really notice the deficit that they are in.

And when Connor was around another three-year-old at the doctor, I. I remember

looking over and this mom was like, oh, she just won't be quiet.

I'm so sorry. And this little girl was interacting with me,

telling me stories, and I just felt so alone thinking, I've got this little boy

over here who's saying one or two words, and this little girl is making up

fantasies and I can't understand a single word that my son's saying. So that

made it even worse, that self-isolation start to set in even harder and.

People at work didn't understand. They're still so little and

they're cute. They're easy to mask over anything that's going [00:13:00] on, easy to overlook these little quirks

and habits that they're starting to form, these new stems that they're starting

to have. All of those things were easy to brush off because they blend so well

with their peers.

So during that time. We have what's called West Virginia Waiver

here, which is our form of Medicaid. If you are able to qualify based off of a

disability, they don't look at your income. Don't, you don't have to be in a

low income to be able to qualify. And luckily for us, Connor qualified based

off of his disability for autism.

So what that meant was our copays were going away because my

insurance company had rejected his therapy several times. So we were paying out

of pocket at one point, we were paying 3,500 a month

We were paying a car payment plus a mortgage, plus another

mortgage just for therapies, [00:14:00] and

this new therapy center was taking advantage of parents like us.

They weren't trying to help in any way. They just said, Hey,

you have a very heavy bill. Your insurance isn't paying it. We have to be paid.

We didn't care. We were gonna drain our bank account, whatever it need,

whatever we needed to do. To keep him in therapies we were gonna do. And right

up until the point that we thought, okay, we're gonna have to sell our house.

We're gonna have to move, maybe move out of the state to

another state that has better resources. He was given that opportunity to get

on this program and everything changed for us. We were able to breathe. We were

able to not pay as much out of pocket. We were able to seek other therapy

services with other providers.

Life completely changed. So when that happened, I said, okay,

we need to tell the other parents that we've met at this therapy center, make

sure that their kids are also on this [00:15:00]

program. 'cause we knew that if our child was, they were gonna likely qualify

too. And we knew other parents that were paying out of pocket and feeling.

As drained as we were. So that is when UNP Puzzled Parents

Connect Support Group started.

We were a group of 10 parents at a round table with me

presenting the tiny facts that I knew about this program, saying, Hey, I could

probably walk you through how I got on it. You guys can get on it. And then in

the meantime, we started learning more about different programs that our kids

will qualify for that could have saved us.

Thousands had we known sooner, but the silver lining there was,

even though we were having an awful time at this therapy center, we were able

to say, okay. Let me help you and then we'll figure this out together. And we

now have a friend. We've made a