Meet Lia M.
A diagnosis in adulthood sets this husband-and-wife duo on a path of community advocacy.
We're really just trying to pretty much bridge that gap between both sides.
The foundation of the non-profit organization AutismWish is rooted in family and emerged as a response to needs that arose during the pandemic.
Founder Lia and co-founder Matt, who are both neurodivergent and married, established the organization after their daughter's therapy was disrupted at the start of the COVID pandemic. The family got creative in bringing that help into their home.
Lia's own autism diagnosis came after their first daughter was diagnosed on the spectrum at the early age of 20 months. Meanwhile, Matt has ADHD and dyslexia.
“We both have a background of understanding what it was like, navigating the world with a disability," says Lia.
When services for many in the community became online-only, Lia noticed something.
“For things like physical therapy, occupational therapy, even speech therapy, it's all kind of hands-on. While it’s hard to do that remotely, it was like every time I brought her to therapy, she’s playing with this toy or she is using this item,” Lia recalls.
That observation led to AutismWish being born.
AutismWish is a charity initiative providing autistic children with sensory therapeutic items and parent resources.
“We decided to establish AutismWish to connect kids with those items by having them and their parents put those items on a wish list. We would get sponsors and try to grant as many of those items as we could so that those kids could continue those therapy-like sessions at home.”
This personal journey to sponsor “wishlists” was a success. AutismWish also provides free resources that Lia developed with her own children, which she thought would help other parents at home, including visual schedulers and planners.
“We're such a small mom-and-pop operation. We really rely heavily on donations and sponsors. We run this as a second job ” Lia explains.
Aside from providing therapy items, there are moments when an opportunity for something even more significant arises. One memorable instance for Lia is when a donor expressed a desire to commemorate retirement in a unique way.
Lia had previously assisted a family with an autistic son who was in palliative care, requiring comfortable clothes for his treatment. Upon reconnecting with the family, Lia discovered that the son had a strong desire for a PC computer gaming system to engage in gaming during his bed rest. The gaming system was provided, and Lia reflected, "It was truly amazing. The mom was moved to tears, and it was an exceptionally touching moment. We had never encountered a situation like that before."
Additionally, the couple embarked on co-hosting the Embracing Autism Podcast with the goal of fostering greater awareness and building a more compassionate and inclusive community.
Then the couple’s second daughter was also diagnosed with autism.
“Now that the second one's diagnosed too, it makes us really have this kind of like intuition on how to help families in this community.” Lia said.
We caught up with Lia to learn more about the nonprofit:
Can you tell us a bit more about what it is like working with your husband on this project?
Because both he and I have our own disabilities, it's made it easy for us to have this chemistry when it comes to AutismWish and our 'Embracing Autism' podcasts.
We have a lot of banter back and forth on our podcast because we both have these common experiences to pull from. And then we have the common experience of raising the same kids together. It really makes it easy to have the right type of chemistry to run a program that is aimed towards something that we are both experiencing in life together.
What does being a “Community Ally” mean to you?
For me, it's kind of a mix because I have my own diagnosis of autism. I'm a parent to two autistic kids, and I'm heavily involved in our local and national community. So, for me, I am invested in how I can give back and help both the parents and the kids.
When my husband and I first started the “Embracing Autism” podcast, we did a lot of research first to see what podcasts were already out there in terms of what resources parents were getting. And what we noticed was that a lot of it was really tailored towards the parents' feelings and the parents' journey. And we wanted to do that. But we also felt like there was a lack of focus on the child's experience and helping parents refocus some of those feelings to try to remember the child's experience in that process.
Part of our mission has been really trying to find an even balance where we're kind of saying, 'hey, we've got to acknowledge the parents and caregivers go through this burnout, they go through these difficult times, but that we can't lose through that difficult time, the experience of the child and the fact that the child who is autistic is also struggling and needs support and empathy.'
So, part of our services has really been about creating physical local communities, like running a support group locally to us in our local church, to the online virtual support groups and the podcast where we're really just trying to bridge that gap between both sides.
If you could tell the world one thing about the autism community, what would it be and why?
I think the most important thing to tell people about the autism community is that autistic individuals, just like any other individual, are each their own person. They each have their own limitations, their own strengths, their own opinions. And I think that we have to be careful not to lump everyone into one category, whether that's for good or bad. So to me, it's really important to remind people that just because you see something on social media or you see something published in a book or something like that, it doesn't necessarily make it representative of the group as a whole.
And it's important to have conversations with individuals one-on-one and try to understand what everyone is like rather than making assumptions based off what somebody says on the internet.
What's your number one wish right now as you're sitting?
You know, I think a nice paid vacation on some island with a pina colada, just chilling because we were really, really busy.
Learn more about AutismWish.