Episode 9 with Brie Seward Transcript
Keith: Welcome to Disability Empowerment Now. I am your host Keith Murfee-DeConcini. Today I am speaking with Brie Seward, the Executive Director of the Autism Society of Southern Arizona.
Keith: Brie, welcome to the show.
Brie: Thank you so much for having me, Keith. I appreciate it. And love being here.
Keith: Thank you. I got to know you through a mutual friend of ours, Jared Perkins who is the CEO of the Children’s Clinic of Southern Arizona. I was reading your bio this morning and we also did Arizona LEND at different times. Do you remember when you were a part of that program?
Brie: Oh, you can never forget being a part of that program. And Jared was also our past President and he was the President when I first started the Autism Society. So I got to know him really well, and he really helped build the foundation that we have now for our organization. So we have a lot of great things in common.
Keith: Yeah so when did you do the Arizona LEND program?
Brie: I was a part of the Arizona LEND program in 2017 and that’s the same year that I started for the Autism Society. So I had a lot of things going on at the same time, but in retrospect it was really amazing because I could build the beginnings of this organization.
Under my leadership with the mentorship of people like Dr. Sydney Rice, who was a Developmental Pediatrician at Banner making Children’s Clinics, and so I really was able to utilize the resources and the experts that are a part of LEND to first establish this organization. So it was a really, really great experience, and I’m still involved to this day. The connections you make and the friends you make in the program stay with you even after the program ends.
Keith: Certainly. I was involved with it between the other half of 2015 to 2016, maybe 2016 to 2017, it’s been awhile.
Brie: So you were right before me. That’s great you paved the way.
Keith: I am not so sure about that. I actually got recommended to the program by another mentor of mine, Kyle Lininger who works for the Intermountain Behavior, excellent program.
Brie: And he is actually our current President so we still have a lot of great things in common, yeah he is our President now.
Keith: Yes absolutely and I am going to be interviewing Jared this friday and I am going to be interviewing Kyle later this month so.
Brie: That’s great.
Keith: And so tell me more about, well I already know what motivated you to become involved with the Autism Society, but for the listeners who don’t know and don’t have the benefit of reading your bio, please tell us.
Brie: Absolutely. So I became a mother 11 years ago and when you become a mother, it’s a whole new territory, and my first born, his name is Sebastian. He was kind of showing some signs of what is now autism but when you’re a first time mother, you don’t really know these things if you haven’t been exposed before.
So when he was three and a half, he received an Autism diagnosis. He’s 11 now, and so I was really a first time mom navigating Autism, myself, and trying to put together the support and services for him out in Florida. Then I moved to Arizona and had to really restart that whole process and amazing people were in my path like, you know, Dr.Sydney Rice and the Autism Society was one of those organizations I reached out to and got involved with. I leveraged my past marketing experience to be part of their court committees and be involved in the events that they were doing and just really met some amazing people like Jared and Kyle, and got involved personally, because I was affected personally.
And I knew what it took as a parent to put all the resources, therapies, and programs in place so that your child can thrive and so that they can you know, really maximize their potential and help them with the deficits that he was facing with speech and language, you know, different, physical therapies, because it takes a lot, it’s a lot to understand as a parent, so now I’m on the other side of it, you know, leading this organization and helping other parents that we come into contact with on a daily basis.
All of us here at the Autism Society, there’s two other mothers who work at the organization and they understand firsthand, they have children with a diagnosis. So when we get a call, we can sympathize with the people that call us and that are reaching out for help, but we’re also able to provide those solutions, with resources that people need. We just want to help them get to where they’re going next, because time is of the essence and we really want to help the community find what they’re looking for.
Keith: So you mentioned that you first became involved with the Autism Society, due to a personal connection, and now you are the head of it. What is it like starting with an organization and then after some time being asked to head it?
Brie: Yeah. I mean, it, you know, when you follow your instincts and you follow your heart and your passion.
Keith: No I don’t know what that is like.
Brie: You know exactly what it’s like. So when you do that, and then the opportunity comes for work it just, all, everything falls into place the way that it should. You’re doing your life’s work and it comes very automatically and it comes because of what you’ve experienced and what you now want to help people with.
So it was a really organic experience. You know, I was in marketing before and I worked at a very high end luxury retail brand and I was involved in e-commerce and systems and big teams and big budgets. Now I can leverage that experience that I have and see how we can maximize our potential with such a small organization and small, small budgets and, you know, really see what we can do for our city, because I’ve seen what’s been done in big cities.
So it’s really great to leverage that and utilize that past experience for what I’m doing now, and it’s like a second chapter for me, you know, it’s a new page in the book that I’m writing of my life, and I’m really doing it because of my son and for all the other sons and daughters out there that are going through it every day. So when you find that, like, you know, you’re being led and when you get paid for it, it’s just a bonus.
Keith: Absolutely. So tell us more about what the Autism Society does, what are some of its strengths, areas for growth. As the Executive Director now, how long have you been the Executive Director by the way?
Brie: Well, since 2020. So we all remember that year. So I had to lead in a pandemic, and we had to pivot a lot of the things that we’re doing. So we have programs like parent peer support groups, teen meet-ups, adult, social clubs, empower hour parent training with strategic partners in the state and a class called social butterflies that offer social skills for kids and teens, and it’s a social skills class. So we do a lot of these programs, but in 2020, they were all in person. So when I first came on, as the Director, I had to pivot to virtual classes, I had a huge Autism walk and resource fair event that we were doing in person and we had to pivot that to online. We just introduced our first ever drive in movie event on set last Saturday.
And that was the first of its kind and it was a smaller gathering, more intimate affair with a hundred vehicles and great supporters and sponsors and target and food trucks and entertainment and partners that were there to help support. So we’re doing new things. It’s really a time to re-imagine what we’re doing and why we’re doing so we really listen and lean in to our community and to what their needs are.
So during the pandemic, we did a needs assessment. We did focus groups. We wanted to hear what our families needed the most, because what was relevant in-person became obsolete in 2020, and so we had to shift everything and a lot of our families said we’re struggling. You know, we’ve lost therapy and programs and school, we’ve lost our jobs. Our homes are on fire. What do we, you know, we need trainings, we need direct support.
So we started unveiling those programs that we do. We did U of A cooperative extension that helps us with a PPP stepping stones program where it helps parents manage challenging behaviors.
So we’ve had a lot of success with that, and the waitlists were just growing and we kept offering more. One of the parents told us they needed socialization for their kids because you know, some of these kids were at home by themselves, you know, with their parents, but maybe they were only children.
So they needed exposure to other kids, you know, maybe they weren’t going to school anymore, they weren’t doing homeschool. So we introduced a virtual social skills class for them and just heard so many great stories and parents were so relieved. We offered classes in Spanish and we exist because of what the community is telling us they need the most.
So we’re pivoting and we’re able to offer solutions and, and programs for the direct needs of our families.
Keith: That’s incredible that you are going deeper though as the Executive Director, and you talked about some of the strengths of the Autism Society and adapting to the pandemic. What are some areas for growth that you would like to see the Autism Society excel at in the future?
Brie: Yeah, that’s a great question and one that I wrestle with every day, you know, the greatest demand we’ve had lately is for trainings within the community. So we get calls about, hey, our school needs Autism training or our teachers are having some challenges with some kids they don’t have the tools, and the knowledge to work with kids on the spectrum.
So we go into schools, we do Autism training. We got requests from libraries, law enforcement, foster care agencies. So through that, we built this program called Autism friendly communities and what this program does is we work with experts in the field.
We’ve created basically a cohort of experts anywhere from board-certified behavior analysts. So those are called BCBAs to experts in employment and people that can come in and train businesses on how to hire and what are their best practices for making opportunities for autistic individuals to work.
We have partners with those community resources that we need with schools and so we work with these partners and if we get a school training, we’ll say, okay, to our group of BCBAs, you know, are you available for this school? And we work one-on-one with them to build a really high-level professional development training for these groups.
We also work with experts of law enforcement individuals who are trained. They have experience in the department. They have body cam footage. We’re going out to the Wilcox Police Department at the end of the month to deliver a training, and someone is coming in from Chandler, who is an investigative specialist, and she is great at what she does.
We really want to multiply that, because imagine you go to businesses, fast food restaurants and you know, schools and libraries where everyone understands Autism, how much more accepting and inclusive will our world be, if the people on the other end of that organization said, Hey, I know what you’re dealing with, I know how to help you, you know, do you need some quiet time?
Do you, if I’m a mom, struggling with behaviors, they kind of don’t look down on them, but they are able to assist and maybe help the child redirect entertaining, and if they see someone, you know, a parent at a grocery store, struggling with a child, don’t quickly assume that it’s just a bratty kid you know, it could be that this child is on the spectrum and, and maybe the place is very overwhelming for them and their sensory is just overloaded, you know, what can you do to have to lend a hand to the parent and provide some support for, I mean, that’s just what we’re looking for is more supportive environments.
And we’re here to educate and work with the people that we know are experts in the field and we trust and deliver these Autism community training programs. So we can have a city that’s more inclusive and equitable for those on the spectrum.
Keith: So we talked about our mutual colleagues and dare I say, close friends who we both know Jared Perkins and Kyle Lininger, because you are the executive director of the Autism Society and they are both on your board, and Jared was the past President and Kyle is the current President of the board, dare I say, or dare I assume rather that the Autism Society has a very close relationship with the Children’s Clinic and Intermountain, is that correct?
Brie: You’re absolutely right. These are our community partners. Here’s a couple examples of how we work together. So Intermountain Academy is building a sensory park on their campus. And so we’ve purchased a brick with our name on it, Autism Society of Southern Arizona, I’ve also purchased a brick personally for my family to build the sensory park.
And it’s for kids on the spectrum that attend this school, but eventually it will be something that the community could utilize. So we’ve helped with communication on supporting this endeavor. We’ve spoken at events to help them, you know, increase funding and building this, this park out. They’ve been a part of our all-in for Autism campaign video that was seen this weekend at our event and it’s a great video that showcases what the community is already doing to support Autistic individuals.
You know, the Children’s Clinic is where we’re our headquarters are and that is great because you know, a child can be diagnosed with Autism, a couple of rooms away and then the developmental pediatrician who’s also on our board can walk them to us and say, okay, here’s some resources and people that know what you’re going through.
And we’ve actually sat down with many families, once they leave that door and they come to our doors and we’re able to provide next step resources for them when they’ve received an Autism diagnosis and this is something I wish I would have had back in my day, you know, I really left the office feeling so defeated and like I was walking into unknown territory.
So we really partner with both organizations the way we should and help families to the best of both of our abilities. So it’s a really beautiful partnership that is ongoing.
Keith: That’s wonderful to hear. So you have a very close and personal connection to Autism and it fuels the work that you do. Do you think that if you didn’t have that personal connection that you would have found your way into this work, or is that personal connection so critical to your understanding, or motivation, your passion for what you do?
Brie: That is so good, Keith, and I’ve never thought about that question because I’ve just kept running towards the directions that I’m being called into. Honestly, I don’t think that I might’ve because I was running in a completely different direction. So I was on a different path with marketing and achieving those kinds of corporate, you know, aspirations and things like that and I gotta be honest with you, it was very empty and it was not fulfilling.
I did feel like something was missing, even though it was things that I was interested in and I was being exposed to these amazing opportunities. It just didn’t hit me inside like this work does. You know, my younger son was actually born as a micro preemie at 25 weeks, so I do think that my life has a greater purpose to do these major projects and programs to help families, because I understand what it’s like to walk through a different door.
Like I understand as a parent of a child who was in the NICU for three months, what it’s like to not leave with your child, you know, after you’ve given birth to them and to have to go back and forth for three months and just hope and pray every day, you get there that your child has, you know, good results for the day, and to know that other children don’t make it out of there.
That’s a very scary path to walk and this Autism experience can be very scary and it can leave you, you know, at the end of the day, just on the floor with your hands on your head saying, like, what do I do next? I don’t know what to do. I don’t know how, if I have the power to do this, and because of those experiences, and my knowledge in other areas combined that makes me who I am today. So I don’t know who I would have been without those experiences. I probably would be at a desk job, you know, and definitely be a part of the community overall because that’s my nature and that’s who I am, but in a different way, and not in the way that I am now.
So I do think it takes, affecting you personally and I can see that with the sponsors and things like that, like people that have been affected by it, or have staff and employees that have been affected by it are actually the ones that raised their hand and want to participate, you know in a very big way.
So I do think it has to be something that resonates with you personally or not. I’m in awe and in shock and love those people that do it anyway and like the doctors and medical professionals, professionals that are in the field that have never been affected by it, but are still so passionate, and so those people are just really just blow me away and I’m in awe of them because they didn’t have the experiences that I had and they’re still doing it and they’re on the receiving end of serving those that have, so I just, my hats off to those people too.
Keith: So that is all very moving and thank you for going deep in your personal experiences, it seems to touch you to this day. How old is Sebastian now?
Brie: So Seb is 11 years old. He plays flag football and is really competitive and has been so successful on his team that they flew to Florida last summer to play in a National Championship.
And he won this year too. So they probably get to travel out of state at some point at the end of the summer. You know, he’s really a testament to our village, you know, and a lot of early work with early intervention services, and just me saying yes to things that I didn’t know about, like that the state supports that come and work with your child or, you know, speech therapy, physical therapy, occupational therapy, a lot of at-home knowledge, ABA, which is applied behavior analysis therapy.
I mean, we did a lot in those formative years for him and you know, now he’s involved in, he does a lot of personal training over the summer, because of opportunities like empowerment scholarships through the state, he’s able to, you know, get the education that Is appropriate for him and that’s right.
So it’s maybe that smaller class sizes go to private schools so that he can, you know, have a smaller class where he that’s what works for him, and so just we’ve been able to really put together the things that he needed to thrive. So he’s just, it’s a really great thing to see him blossom now.
Keith: Yes. I want to say that I empathize, but I can’t. But I mean it’s still so moving. I mean I have to get you together with my mother because she went through the NICU experience with me in the early to mid-80s in New York City, and that time frame compared to 11 years ago, or even five years ago is a different world.
Brie: I would love to meet her Keith.
Keith: Yeah, I am sure she would love to meet you too. So a little personal background on me for you and for the listeners, I was born three months premature with mild Cerebral Palsy affecting my right side and my speech, what I refer to as an accent, because that is all it ever was. My best friend in middle school and high school and throughout most of my life had Autism, he really latched on to the previous terminology Asperger’s Syndrome, and I didn’t find out that he had that until a year before he died. Yeah, that was incredibly difficult and then another friend of mine in New York who I went to graduate school with who unfortunately also passed.
Brie: I am so sorry Keith. That breaks my heart.
Keith: Yes it was but the point I am trying to make is not that their passing, even though that was extremely difficult in both cases, but they and their names were Johnathon and Jason or J as he became known in the later years in his life, and they were both young people, but what really struck me, and I knew them both very well, is that they were both people persons.
They were both really social butterflies to an extent and why I bring them up is so when I first learned about Autism and the most prevalent misconception of Autism and people with Autism is that they are standoffish, anti-social, and arrogant, and with the two examples and probably countless others I have experienced throughout my life and just not known about it, is just that that is really a diservices, that misconception, like all misconceptions really, that people who have Autism will automatically be standoffish, anti-social, and arrogant and will not speak.
And so as a parent of a young child with Autism, how is it confronting or having to be confronted by some of those very damaging misconceptions that seamlessly apply to every person with Autism but the best saying is that if you met one person with Autism, you met one person with Autism, you haven’t met the totality of Autism, and you never will. And you can say the same thing about Cerebral Palsy, you can say the same thing about Bi-Polar, Epilepsy and we can go on and on. And so as a parent because you have very personal experience , again an assumption, how is it as a parent to deal with those misconceptions in such a personal way?
Brie: You take it one person at a time. You really, you know, one cashier at a time, one bank teller at a time, one coach at a time, and it just starts with education. And it starts with meeting people where they are and saying, this is what autism looks like. You know, it doesn’t look like what you thought in your head doesn’t look like your Rainman version of what you thought Autism was, but yes, this is Autism.
This is, you know, a kid out there on the field who is really good at football and knows all the stats there are because he takes things in a different way than a neurotypical individual. So Autism has multiple flavors and you know it looks different with every child, every adult.
My youngest son, one of his best friends is Autistic, and I’ve got to spend a lot of time with him this week. He is so social, so funny, just creative and talented and gifted, and, oh, I just like, so enjoy that, my son who’s neuro-typical doesn’t know that he has Autism and it doesn’t matter, they just play together in the most beautiful, genuine, authentic way.
That’s how we should be as adults, you know, we should just, okay, you know, I met somebody, I did meet somebody recently, it was Kevin, and when I first moved here and I said, oh, you know, we’re excited to come to this place, and my son has Autism and, almost like apologizing for it, or just kind of warning him, and he’s like, so, and, he can play too, you know, and that’s, that’s how we should answer.
That’s how we should embrace people of any abilities and just say, just give it time to, to connect with them and learn from their perspective and see the world through their eyes. Even as a parent, it is so important to see the world through your child’s eyes, and then I think it makes you a different person.
And when I started doing that, the world became just a better place for Seb. You know, you have to really modify the things that you’re doing and not take them to loud spaces all the time and kind of just kind of pivot, just kind of be resilient and move things around in ways that are more beneficial for them.
And that’s called a sensory diet and you just, you know, you’re not going to take them to a huge cafeteria. My mistake was one Easter taking him to a huge early morning stadium-filled Easter service that was very far away and we had to wake up really early. I did not set him up for success that day.
So you just have to learn by experience and you know, what to do and, and how to really you know, make the relationship the best it can be. And I think if we were more accepting in general, we wouldn’t have those stereotypes and the stereotypes would go out the door.
And so you just have to start where people are at and even people that don’t know what I do, I just talk with them about it and just hopefully educate them on what Autism is and what it looks like and that you know, and so that may be the next time they meet somebody with a diagnosis, they don’t have any set stigmas in their head of what it’s gonna look like and they connect with that person in a new way.
Keith: Yeah when I found out that Johnathon had always had Autism, Asperger’s Syndrome and he preferred the diagnosis to be called for him personally, my mind did back flips and I was wondering, how did my disabilities spidey sense not be triggered a lot sooner and then I realized, I did not have a disabilities spidey sense or whatever you want to call it, because it didn’t really matter.
Like your neuro-typical son and his friend with Autism, I mean it is just, it is a non-issue, I mean with Johnathon, he was probably the last person I would have ever, ever expected to have Autism because, it’s not that he hid it so well, it just became so ingrained in his personality and his personality was that of a social butterfly that unless you really really knew what to look for, you would have no idea, like I have a gleek issue because of my Cerebral Palsy, but unless you are a PT or a Neurologist, you are not going to be able to know what that is. I mean I would rather people ask the question why do you talk like that then assume I am drunk, high, or on drugs, or just a downright creep. I mean like if I can answer that question about why I talk the way I do, then my advocacy is going to fall flat. It is not like I can hide my voice, that is impossible, so I really like people to just man up and woman up and ask the uncomfortable question.
I mean you certainly can’t do that with everyone, but when you hear that someone is a disability advocate or is studying their masters degree in disability studies and their voice sounds a little bit weird, I mean that’s really an opening that I wish more people in relation to me would really take advantage of because it’s like I mean, I am irish and Italian and Scottish, so I like to drink with the pandemic it switched to non-alcohol and then no alcohol at all by choice, but the fact that I am Irish and like to drink doesn’t help matters to combat the very wrong misconception that I am always drunk or really trying to pick up people because I am drunk and therefore have lower intuition.
But no it’s just who I am and I mean so the misconceptions about disability in general and the fact that they are more often than not more multifaceted than even you and I could ever comprehend. To say nothing of the neurotypicals who are not yet disabiled themselves is, I mean I have empathy for them, but I am also constantly shocked by, as the years go on and you see more disability representation, not enough but certainly more than a few years ago, even eleven years ago. In Hollywood, disability writers, TV personalities, you would think that people, and the cultural understanding of disability would be a lot more broad than lets say 32 years ago when the ADA was first passed and that is the most shocking thing to me, that we are almost 32 years later and it’s not really progressed that much which is mind-boggling to me.
Brie: I know, I know. That’s why it’s really important the work that you’re doing and the conversations that you’re having, because maybe it can open the mind of someone who was hesitant to understand more about Cerebral Palsy or Autism.
We just got to break down those barriers and there’s just still a lot of stereotypes out there and discrimination in general. It’s just going to take more people like you Keith and us to do our part to, you know, show up at those schools and law enforcement and, you know, libraries to say like here’s Autism and, and here’s how you can better learn about it and help families that are experiencing it.
It’s just going to take, you know, a lot of moving mountains so that we can change the landscape. I mean, and what’s great is there’s movies like Coda that was out and one lately, and in the last award show, and it’s like it’s finally happening, hopefully the tides are turning.
I just watched a movie to a great, great audible documentary about, you know, a deaf football team and Seb sat and watched that and it’s like, maybe more of this is actually happening. Definitely not enough, but if you look for it, I think it’s out there and we definitely have to create it.
We’re even thinking about what other types of arts and culture activity that we can get our community involved in. So it’s just gonna take a lot of people and our community in general to participate, fund, and believe in these programs so that we can just further our progress.
Keith: So coming back full circle, we started this interview talking about our mutual experiences with Arizona LEND, which is Arizona Leadership in Education and Neurodevelopmental Disabilities. How do you think that your experience in that revolutionary program, or revolutionary year of study, helped prepare you to lead the Autism Society of Southern Arizona?
Brie: Um, so I think the cornerstone of LEND for me and how it relates to the work that I’m doing now is the LOI process which is a letter of intent, and so you put together an idea and you work on it for the entire year and the amount of time that LEND is.
I put together the navigating Autism program and through the mentors that I had through the program. So through Dr. Rice through Dr. Gardner and the professors and the faculty that said, we’ll help you with this.
And yes, if you want to reach out, reach out, I reached out and I definitely got their input on the idea that I had, and it was basically, you know, for the Autism Society to build out the navigating Autism program. So if you’re a parent and you just received a diagnosis for your child, you go back to the Autism Society and there’s like an information and referral specialist who knows the ins and outs of the resources and the programs that we provide.
And then we also have a set of resources for any need. So any need that someone comes to us before the diagnosis, after the diagnosis, we have. So a lot of people come to us primarily for those diagnosed with Autism.
So we broke that out into pediatric and adult lists, but that didn’t really exist before. So I wrote about building this program that has specialists who understand the field and are experts in Autism and they help on a daily basis, help people navigate Autism, whether you’re an adult and you want a diagnosis or you’re a parent, and you have questions about a diagnosis, this person is supported, to help you navigate that process.
And as a result of that, you know, and something really special that I remember is that one of the individuals on the LOI panel came up to me and he said, you got to do this, and so it did get an honorable mention, so I felt really good about it because I was really intimidated by the group.
I mean, there’s a lot of amazing people like audiologists and future doctors and people that have been doing this for 10 years and here I am just walking into the program as a parent, with lived experience, but you know, really starting out in a nonprofit. I was intimidated, but at the end I just felt like, I did it, you know, I did it and, and someone believes in the work that we’re doing.
And as a result, we’ve gotten funding through grants for the program and eventually that in 2019, we were able to fund an information referral specialist doing the work and she’s bilingual, and she’s a parent of two boys with Autism, so we’ve given, you know, provided jobs for people in the community. So, that program is growing and it’s progressed and we’re able to get funded pretty substantially for what we are, because of the foundations that Arizona LEND gave me through that LOI process, and I’ve definitely gone back to tell them all about it.
I’m really proud of it because that gave me the foundation of being exposed to the field and knowing what people need and knowing how to build a grant in the way that it needs to be built, so that the funders, you know, have all they need, so that you can launch a successful program.
So it really helped me get my legs into the nonprofit world and now I’m stronger and better for it and I know everybody coming through the program will be better for it.
Keith: Yeah I can empathize with you feeling intimidated by your other cohorts, because I mean yeah, I came into the program as a disability advocate who just got my MA in Public Administration and I had not yet begun the second half of my MA in disability studies and you have me in this room with audiologist, doctoral studies people, dentists, and I am like okay and then one of the most special things that Arizona LEND did for me and sadly I am not as connected with them as you are, but when I was in the program, they had wanted me to teach a class on what it was like living with Cerebral Palsy, and they were going to give me the full three hours of that class.
I felt very uncomfortable with that because I could only talk to the male side with living with Cerebral Palsy and there was this young woman in the cohort that I was in who had Cerebral Palsy and so I convinced Arizona LEND to spread the time equally between us, and I got her sister to come in as well, because they were a buddy duo of disability and I will send you that class recording after this.
Brie: Yeah I would love to see it.
Keith: Yeah so that in particular was the highlight that I was not expecting. But like all of the acronyms went directly over my head and so yeah, wrapping up this interview and I mean. So I have been asked several times when I have helped out with studies on disability, am I Autistic? I always get really offended by that question because I am not and I think it would be one of the greatest sins I could commit if I tried to pretend I was Autisitic even for a disability doctoral study that I am helping out with, because I know I am not, and I have multiple friends who are, people with Autism and disability advocates.
I mean so, as a parent, you touched on that when you first got the diagnosis of your son, you knew very little, and I assume you were like my mother, like how do I support my son and how do I raise a son with disabilities is my family ready and prepared for that but you have had eleven years and I am sure those years have been as remarkable as they have been hard. But as a parent in seeing your child grow up in trying to prepare him for the world he is going to have to face. What are your wishes as a parent for your son with Autism and do they somehow mirror the wishes and goals you have as the executive director of the Autism Society of Southern Arizona I mean I don’t know I am just a very curious person posing a question. And so what is your answer to that question?
Brie: Well, I think it’s a great question, and I think that it, what I wish for not only my son, but for other families in this, that we come across, is that they maximize their potential and that’s it and so I think across the board, the wishes is the same, and so when he first got his diagnosis, that was, I wish that he can read.
I wish that he can have a friend, and that it changes through time as they grow, as they develop and certain, you know, it’s an ebb and flow of what their needs are. So I think first and foremost, it’s just for them to have the best life that they can and sometimes parents don’t even know what’s out there.
You don’t know where the speech therapists are or where the doctors diagnose Autism are and so we help find them, because if you don’t find them, your child may lack the skills that they need to talk and that’s what a speech therapist can do is help you learn speech and help you communicate and form words and or lead to the doctor that can make the evaluation and can guide a parent, because when you know, you’re able to do more and you’re able to be empowered with information that can help your child thrive.
When he got that diagnosis, I looked down on that folder that I was given by the neurologist and said, the only one that could make these calls is me. You look over at your son and he can’t speak and he’s scared of people and he’s having meltdowns, and he was like, you’re the only one that has the power to either call these numbers or let him be this and nothing else.
So it gives you the access and the resources by, by moving forward and forward with the label. So don’t see it as a label. I really had to work hard on taking that label off.
And even a doctor helped me with that and said, he said he was Seb before you went into that doctor’s office and after he’s nothing different, nothing has changed with the diagnosis. You know, it doesn’t make him who he is and that’s what I want for families and for my son is just for him to be the best and for others to be the best that they can be. At whatever level that is, you know, and just to meet other people that are going through it and build connections because that’s our mission is to just, you know, create connections where we empower everybody in the Autism community with the resources that they need to live fully.
And that’s all I want to do as a parent.
Keith: That’s profoundly moving. So there is another reason why I am talking to you and why I will reach out in the future. It is that I just joined the board of directors of Handidogs, they provide service dogs in Southern Arizona and one of the areas which they are very clear that they would like more support in dealing with is how to train service dogs and service dog trainers in matching service dogs with people who have Autism and so when Jared reached out to me and said I have to introduce you to Brie Seward. If my last name wasn’t attached to me I would butcher it. But yeah so that’s another area of my professional life that I am going to hopefully be the connector to because you have lived this experience through your son. You know do it as a full time job, you support countless families throughout Southern Arizona and there are other Autism Societies throughout the country and so that is another connection I am hoping to make.
Brie: That’s great, I love it.
Keith: So how can people like me, who are disability advocates who do not necessarily have a personal connection anymore or ever to a person with Autism, or how can people who do not have disabilities at this moment themselves support your mission and what the Autism Society of Southern Arizona, does so remarkably well?
Brie: Yeah, thank you for that. I mean, I think it’s it’s example of what you did today by just taking the time and sitting and learning about people’s stories. You know, the latest data from the CDC is that one in 40 children have been identified with Autism spectrum disorder in Arizona. So if people don’t know somebody with Autism, it’s just a matter of time until they do encounter somebody, it could be people in your neighborhood.
For example, I was running the other day and I know of a family that has an adult son with Autism and said, hey, how are things going and gave him t-shirts from the Autism Society. You just extend the support where you’re at and if you do encounter people that are, you know, have someone in their family with Autism, like at a grocery store, at a movie theater at a library, you just are able to look them in the eye instead of looking the other way and learning about Autism, becoming involved with our organization and volunteering and seeing how you can participate or donate or be a part of the big things that we’re doing.
So I think today you already did that, Keith, and I think it’s just an example of what other people can do.
Keith: So money talks.
Brie: It does.
Keith: Yeah and I mean there are several ways to give, and so for those who can’t give financially because everyone is strapped in the middle of a global pandemic but would want to still help out hopefully from the goodness of their hearts, and not any other alternative motive. How is the best way to do that for your organization?
Brie: Yeah thank you for providing that opportunity. If you visit our website, as-az.org you’ll see a donate button or you’ll see all the things we’re doing. There’s even volunteer registration forms. If you want to volunteer with us, it was really exciting on Saturday. We met some great new people, future doctors, daycare owners, people that work in behavioral health, people that just wanted to lend a hand and be a part of something.
Great. We met this weekend and so I think it’s little steps like that. Just saying, you know yeah, I want to be a part of your programs. I want to help you with what you’re doing. I want to learn more, it’s all on our website and or you can reach out to us and let us know how we can get you started.
So thank you, Keith so much for the opportunity to share with others and your listeners, what we’re doing and, and share my story. So thank you so much for your time.
Keith: Thank you. And I will be in touch soon. I’ve personally learned a lot and I feel like I’ve known you for years and it helps when we have very close colleagues more than we probably even know, probably even talked about on this podcast. Once again Brie thank you so much for the work that you do and for the personal stories that you’ve told. It is what makes my job so fulfilling it’s listening to the personal side and being motivated to continue this work. I founded this podcast on the interview principale and not me talking away for two or three hours on a subject because I really wanted to have the chance to be a platform where I highlight others and their missions and their passion. It is stories that I have heard from you and your job that makes what I do so worth it. So thank you so very much.
Brie: The feeling is mutual Keith. You’ve inspired me to thank you so much and I’m so proud of all you’ve accomplished.
Keith: Thank you. Bye.
Keith: You have been listening to Disability Empowerment Now. I would like to thank my guest today and you, the listener. More information about the podcast can be found on DisabilityEmpowermentNow.com. The podcast is available wherever you listen to podcasts or on the official website. This episode of Disability Empowerment Now is copyrighted 2022.