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 friend for our kid and for ourselves, most
importantly, because we’d felt so alone.
We were [00:16:00] around
parents who were, had kids around Connor’s age, which meant that their journey
just started too. We were at the peak of the pandemic, so none of us really
knew what therapies we should be getting Connor and our children into. Where
the kids were gonna develop emotionally, socially, and the self-isolation
started to melt.
So we created this Facebook group. It was a private group just
for the 10 of us so we could post different resources or memes or anything that
was comical or that would be humorous just to lighten each other’s day. And we
started meeting up for coffee. We’re like, Hey, let’s just have a little
outing.
Five or 10 of us would get together. But the beauty in it was
there wasn’t a support group around us, at least in our region. So we started
to grow and then 10 members became 50, became a hundred, 200, 300, and we just
kept spreading throughout the [00:17:00] state.
I don’t know how many we’re up to now. I think we’re around 800 now and we’ve
got thousands on our.
Nonprofit page. But the beauty in it was we started finding
more resources throughout the state and throughout our surrounding states. We
had providers that said, Hey, I’ll come do a training. I’ll come host a
workshop. So we started hosting these virtual trainings in-person trainings,
and. It was so obvious that there was a need for us.
So last year we applied for nonprofit status and I left my job.
I had been in the auto industry for 17 years. Left it to pursue this full-time.
We were granted our nonprofit status in November,
we just completely bloomed from there. At one point. We were
the biggest support group in the state and. We have become, in our state, we
have a member out of [00:18:00] every county.
So we have 55 counties. So we have just spread that love across the state and
across the region. And that was the beauty in it, was that we wanted to connect
other families so that they would have that support system or someone to talk
to.
And we’ve just built programs upon programs from there.
Victoria Bennion:
Really interesting and so needed. Everything that you were saying about those
feelings of isolation and nobody gives you a roadmap when your child isn’t
following the expected path and you have to do so much figuring out yourself.
So I just, I love hearing that.
I think we can both relate a lot to what you’ve
Natalie Tealdi: Oh
yeah, hugely.
Whitney Price: You
said, no one gives you a roadmap. No one talks about. Those emotions, no one
acknowledges it. And for a lot of our families, they have other families that
completely step aside. So the people that they’re thinking are gonna be on the
journey on the [00:19:00] front lines with them
are saying, you guys are living a much.
Different lifestyle than we are now. So they drop off, they
fall behind, or they just become unsupportive. And that is what happened to me
and my family. We didn’t have support around us. We didn’t have friends that
had children with a disability. We were first generation for both of our
families to have a child on the spectrum or be labeled with a disability.
It was completely isolating. Nobody really fully understood the
severity of the emotions that we were going through, and that grief didn’t just
stop after diagnosis. Grief pops up seven years later. I think that is so
important for others to really acknowledge that mental health and wellbeing of
the parents.
And the emotions of these different levels. You have children
that are high support needs, that means that the parent has to be there [00:20:00] 24 7. They don’t get a break. There is no
rest in this job. If you have a child on the profoundly autistic end of the
spectrum, you don’t get breaks. You’re not allowed to just say, okay, I gotta
step aside.
No your kid may. Eat something they’re not supposed to. They
may have pica, they may have supports that other people wouldn’t be able to
relate to. They may have a feeding tube. They may be on different medications,
several medications. So I just think the more, and we’re able to talk about the
emotions that the parents go through and the support that they need, then the
better we’re gonna be able to regulate our child if we’re regulated too.
Victoria Bennion:
Yeah, a
hundred
percent.
Natalie Tealdi: do
You have strategies for managing your own mental health and wellbeing? Are
there things that you regularly do to keep yourself sane?
Whitney Price: It’s
different every day. I think I. The outlook has to change. For me, it took
about a [00:21:00] year to two years to let go
of the Type A personality. So the I have to be on time, had to go away ’cause
we are on Connor’s time, not my time. The emotions of being worried about what
other people thought had to go away.
We had to say, this is our life. They’re not walking in our
shoes. They don’t know our struggles. So people that didn’t understand why we
weren’t attending events, why we couldn’t bring Connor to certain family
members’ homes, why certain activities were not gonna work for us, why we
haven’t been to Disney World or the beach.
All of those things had to be pushed aside. But for the mental
health therapy. For me, we are strong believers in therapy. And oddly enough,
when Connor’s Therapy Center shut down the first time, [00:22:00]
because they did not have A-B-C-B-A we continued taking him to the therapy
center because they had counselors there.
So we made appointments with the counselors just so we could
keep his routine going. So we took him to therapy sessions with us ’cause he
recognized the building. He knew the area, he felt comfortable there. So for
about six months, my husband and I would flip flop just going to different
therapy appointments, just stating that they were for us.
But really it was for Conner’s routine. But the beauty in it
was we were forced to talk to someone. So they knew that they were helping us
because they knew our situation, but. When you’re with someone for an hour to
two hours, you’re not just gonna sit there in silence. They’re saying, Hey, how
was your day?
How are you guys doing? How’s he doing? And they just casually
talk to us, not knowing. Eventually we were gonna start to say, oh gosh, we are
exhausted. This is [00:23:00] awful. We’re
nervous, we’re scared. We don’t know what’s going on. We’re having issues,
finding resources, finding providers. When we started therapy, we had no idea
what to expect, but the beauty in it was just talking and getting that emotion
out helped.
So now therapy is part of our programming and our nonprofit. We
bring in therapists to direct and lead different sessions on the topics of
stress and anxiety, PTSD, trauma therapy, and our members are able to speak
about their experience, whether it be. From their child or their childhood, and
we have someone that’s given the proper tools and techniques on how to stay
calm when you’re putting that hypervigilant state of mind.
It’s awful. And we lived in it for a long time with Connor
because he was going through so many different emotions and not able to
self-regulate that [00:24:00] we would go into
that hypervigilant state fight or flight. PTSD was a diagnosis of mine that I
didn’t really speak about for a long time, and we didn’t know about different
techniques to try to calm ourselves down or get a ourselves refocused after he
would have an hour long or two hour long meltdown.
He was harming others. It’s just there’s so many different
levels of emotions and anxiety that a parent can go through that. In this
community we don’t speak enough about. But when we do start to have that
conversation, the barriers come down and you have other parents going, oh, we
went through that too.
So it was important for us to really dive into a conversation
that others weren’t having to at least make it less of a taboo and more of a
tool and technique to use.
Victoria Bennion:
That’s fantastic. What are you hoping to achieve going forwards with your [00:25:00] nonprofit?
Whitney Price: In our
state, we are the last in the nation for funding and resources. So because of
how of our, how our journey started with the lack of care for Connor, the lack
of. Therapies that were needed, we are hoping to bring and bridge the gap
between what families are not able to find versus what is actually out there,
even if it’s not just in our state.
If we can bring in other resources from surrounding areas or
nationally known resources that are free for families, that’s what we wanna do.
And then we wanna spread more awareness so that we can gain that acceptance.
Overall, something that we started, one of our programs in our nonprofit is
these classroom kits for schools.
So we gift educators, these books on inclusion, they involve a
little boy that has autism, and it comes [00:26:00]
with instructions of how you can read it to your class and how you can teach
the children to be more inclusive to their peers. So we know it starts in
education and for younger children. So we did, month of April, the Autism
Awareness and Acceptance month, where we started passing out these kits, we
were able to impact over 4,000 students. But the beauty in it was we were also
able to keep this program year round. So we want the stigma of just April to go
away. We want this to be a year round. Hey, it’s May, June, July, August.
Every month we hope that they at least have some type of
inclusive activity or something that they’re able to open up a conversation and
say, okay, how can we be nice, nicer, ? So that is something else that we feel
really passionate about, is just speaking out about kindness and inclusion.
Victoria Bennion: I
love [00:27:00] that.
Natalie Tealdi: Who
would you say were your key supporters along your journey?
Whitney Price: Any of
Connor’s therapists were huge for us, and they really became our second family
more than anything, and building our. Support group into a community that’s now
throughout the state was huge. Those families become your supporters. The, your
cheerleaders, the people that you need to have on your worst days’.
Nothing feels better to, 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. You’re talking about, situations
that you wouldn’t be able to say out loud in the general public without having
people shake their head or say oh gosh, these people are crazy.
Those have become our absolute backbone of everything that we
do, and there’s nothing more motivated [00:28:00]
than meeting these families across the state that are happy that you’ve
connected them, but also happy that they have been able to connect with another
member that’s. Around them, or just walking this journey together so you really
get a connection for yourself and for your kid.
Victoria Bennion:
What advice would you give to parents who are at the start of their autism
journey?
Whitney Price: Allow
yourself time to grieve and allow yourself all of those emotions. , It is a
journey. It is a long marathon and it is ever changing. So find someone that
you can consider your support partner because they are gonna be sticking with
you long term too. Always have that emotional support because there’s too many
outside factors that make this journey very difficult, whether it’s.
Within your circle, maybe within your [00:29:00]
family. It could be people at your job not understanding, but having that
emotional support is gonna be key. That’s what I would tell other families.
Make sure that you have someone there that can support you throughout the
journey.
Victoria Bennion:
That’s really good advice. thank you so much for coming on and joining us
today. Whitney, where can listeners, go to connect with you ?
Whitney Price: We are
on Facebook, Un puzzled Parents Connect and you can also go to our website,
unpuzzledparentsconnect.com
Victoria Bennion:
Fantastic. We’ll put links to all those in the show notes.
Whitney Price: Thank
you.
Thanks for joining us today on the Autism Mums Podcast. We hope
you have found a little support, a little solidarity, and a reminder that you
are not in this alone. If you enjoyed the episode, we’d love it if you’d follow
the show and share it with another parent or carer who might need to hear it.
And if you’ve got a story or a moment you’d like to share, we’d love [00:30:00] to hear from you at www.theautismmums.com.
Until next time, take care.