Disability Talks: Don't Dis My Ability

"Pass the Mic" Special Edition: Moving from Autism “Awareness” to “Acceptance”

March 31, 2020 Abilities in Motion Season 1 Episode 2
Disability Talks: Don't Dis My Ability
"Pass the Mic" Special Edition: Moving from Autism “Awareness” to “Acceptance”
Chapters
Disability Talks: Don't Dis My Ability
"Pass the Mic" Special Edition: Moving from Autism “Awareness” to “Acceptance”
Mar 31, 2020 Season 1 Episode 2
Abilities in Motion

In this special edition of Disability Talks, host Shelly Houser passes the mic off to Executive Director Stephanie Quigley as she interviews Genine Bashore and her son Jake, who has autism. April is Autism Awareness Month, but Genine presents a compelling argument for moving from “awareness” to “acceptance.” Genine gets real about the journey from Jake’s diagnosis to adulthood, with commentary about the social isolation often prevalent in the lives of adults with autism. As we consider the detrimental effects of social distancing and isolation during this pandemic, Genine and Stephanie encourage us to remember that social isolation remains a persistent problem for adults with autism who may struggle with building social networks and engaging in social interaction. Let’s move from a passive awareness to an active acceptance of people with autism.



For more information about Abilities in Motion, go to our website at: https://www.abilitiesinmotion.org/ or you can follow us on social media.


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Show Notes Transcript

In this special edition of Disability Talks, host Shelly Houser passes the mic off to Executive Director Stephanie Quigley as she interviews Genine Bashore and her son Jake, who has autism. April is Autism Awareness Month, but Genine presents a compelling argument for moving from “awareness” to “acceptance.” Genine gets real about the journey from Jake’s diagnosis to adulthood, with commentary about the social isolation often prevalent in the lives of adults with autism. As we consider the detrimental effects of social distancing and isolation during this pandemic, Genine and Stephanie encourage us to remember that social isolation remains a persistent problem for adults with autism who may struggle with building social networks and engaging in social interaction. Let’s move from a passive awareness to an active acceptance of people with autism.



For more information about Abilities in Motion, go to our website at: https://www.abilitiesinmotion.org/ or you can follow us on social media.


Facebook: https://www.facebook.com/AbilitiesinMotionPA
Twitter: https://twitter.com/BerksCountyCIL
LinkedIn: https://www.linkedin.com/company/abilitiesinmotion/
YouTube: https://www.youtube.com/channel/UCSEXzEkE_CK5WYmOhMAN4Aw

Support the show (http://www.abilitiesinmotion.org/donate)

Intro:

Welcome to Disability Talks, a podcast produced by Abilities in Motion. I'm your host Shelly Houser. Join us for real conversations and no nonsense talk from everyday people with disabilities living their most independent everyday lives. Tune in for the latest news surrounding disability, accessibility and independence. Where conversations aren't dissed and stories that need to be told aren't missed. So let's talk.

Stephanie:

Welcome to Disability Talks: Pass the Mic edition. 2020 is the 30th anniversary of the Americans with Disabilities Act. So in honor of our storytelling, we have with us Genine Bashore and her son Jacob. April is Autism Awareness Month and the Centers for Disease Control estimates that in the United States, 1 out of 59 children have autism. Boys are four times more likely to be diagnosed than girls. This number has more than doubled since the year 2000. Autism is classified as a spectrum disorder that is categorized by various traits including challenges with motor skills, social skills, communication and repetitive behaviors. Our guest today is Genine Bashore and her son Jake. She is an advocate, an educator, and of course the mother of Jacob, a person with autism. Genine, welcome to Pass the Mic.

Genine:

Hello.

Jacob:

Hello.

Stephanie:

Hello Jacob, welcome. Genine, I just thought it would be interesting for our listeners to hear a little bit about your story and your background, um, starting starting with your family's journey and when you started to notice some behaviors in your son Jacob.

Genine:

Okay, well Jake is ,uh, he's an adult now. Hey, how old are you buddy?

Jacob:

I am 22 years old.

Genine:

He'll be 23 in June. So we'll backtrack a while. We started noticing---Jake has a sister who is older, so we had a very typically developing first child. She was actually pretty exceptionally developing. She hit milestones, you know, pretty early. So we saw a regularly developing kiddo and we saw some things that were, you know, different. We started noticing that maybe he wasn't developing quite as quickly. We started talking to our pediatrician when he was about a year old. There were some things that maybe he was missing. Wasn't babbling, wasn't talking, wasn't walking. There were just some things that I was a little concerned about. She wasn't as concerned. So we just kind of kept an eye on them. As things progressed, I started getting more concerned. Again, not really concerning the pediatrician. So that's one thing that I will say as as a mom. But trust your gut, trust your instinct. Don't necessarily always look to, I mean you should always definitely trust your medical professional, but if you were running into a block with somebody who's not listening to you, don't be afraid to switch doctors. So that's what we wound up doing. After about a year and a half of speaking to somebody who wasn't hearing what I was saying, we wound up switching pediatricians and they finally heard what we were saying, listen to what we were saying and um, that's when we finally got a diagnosis. Unfortunately, that is a lot of the case with most kiddos who are diagnosed. It takes a little while for the parents, guardians to be heard. They're noticing things, they're going to their general practitioners, their doctors. Sometimes it's being swept under the rug, sometimes they're not being heard. It's a little different than it was 20 years ago. Things are a lot different. People are a little more aware. Society's a little more aware. There's a lot more out there than there was 20 years ago. So that's, you know, that was kind of our, our story at the beginning. Not a lot of babbling, not a lot of motor development things that we were definitely definitely seeing and we weren't heard, you know, by our doctors.

Stephanie:

So how, what advice, I mean you, you alluded to some advice in your, in your, in your family history about what you would tell new parents if you have a gut feeling?

Genine:

You, if you sent something or you see them. I mean now you can, you can crack a, a webpage and, and they will list, you know, signs everywhere that you should be looking for. But definitely get a second opinion. We were lucky enough to the second pediatrician that we went to locally in the area, followed him for a few months and kind of was keen on what she was looking for and then sent us to Penn State Hershey, where we saw a developmental specialist that was like, here's what I think it think it is. And back in the late nineties early two thousands it was definitely not as like the, it wasn't definitely as in the forefront as it was as it is now. She was wonderful. The specialists at Hershey was phenomenal and kind of helped us navigate through the early stages of getting him therapies and interventions and things like that. We were, we were lucky. Not everybody is is quite that lucky and it has to kind of navigate their way through the beginning of it. Trust your gut, trust your instincts. If you don't like where you are, find somebody, find, find somebody that you do, someone that's listening to you. You know your kid, you're moms, dads, parents, caregivers, people who live with kiddos, you know them better than anyone else. Yes. The, you know, the scientists and the doctors behind it know the science and the facts behind it. But you know your kiddo.

Stephanie:

So I wonder if you could talk a little bit about the spectrum and what does that mean for listeners who may not be familiar with autism at all. Talk a little bit about, you know, the spectrum and where, where you see Jake on this spectrum of disorders?

Genine:

The spectrum. So when we talk about the autism spectrum disorder, everybody always thinks about maybe the rainbow. So if you can go back in your mind to maybe like your elementary or middle school art class, think about the spectrum wheel of color and think about all of those primary colors and how they were visually on that wheel. And they were divided into a beautiful little pie. And all along that pie were different points of color. So you know, there was this intense blue and then there was maybe more like a muted blue. So in all of the, I'm trying to give a visual with words and hopefully it translates. So if you kind of slice that into the pie and think about maybe some of the areas where, and I'm, and I'm, I'm doing this for Jake, so everybody, a sidebar to this is everybody who has autism is an individual just like everybody on the planet is an individual. So things that he struggles with may not be the same as what everybody else struggles with. So Jake's autism spectrum is different than the next person's autism spectrum. So his colors are different than the next person's colors. So let's just say his pie is, you know, he has poor eye contact sometimes. So his point might be like a deeper shade of red. So that's, you know, on, on that point of the wheel, he has trouble sometimes with sensory input, he walks into a place where it's really, really loud that might be difficult for him. So you know, his color might be really intense on that, on that part of the pie. So it's really difficult. It's not linear. He's not less autistic or more autistic. It's not a linear spectrum. It is points on this beautiful wheel of spectrum. And there's different shades because there's so many different co-occurring issues that are pinpointed on that spectrum and his basket of different abilities are different than anybody else who's got the same diagnosis. That's why it is a spectrum because it is, there's so many variables and there's so many different things. So if you've met one person with autism, you've met one person with autism, so I'm going to tell you the things that we do with him, work with him and they work with him. They, some of the things may work with somebody else and they totally may not like you know what we do with him on a daily basis is cool with him and it may not even sort of work with somebody else. Like he's great to go into use hand dryers in a public restroom and we know some kiddos who, the thought of using hand dryers is totally, it would be sensory overload because the sound and the air and things like that is just, they can't handle that.

Stephanie:

Right. I think what a, what a beautiful description of the spectrum. I've never heard. I've never heard somebody describe it that way.

Genine:

Yeah, it's just a huge and I've seen, I forget, I've as he's grown older, I've started to follow a lot of websites and Facebook pages of actually autistic adults. Jake, we advocate for him a lot because it's something he's not always able to do for himself, but there are droves of actually autistic adults who advocate for themselves, so I try to follow their lead to make sure that I'm doing the best for him and that's, I think it was one of the diagrams that I kind of looked at from one of their pages and I'm like, this is the greatest thing that I've ever seen because it's perfect. It's not, it's not linear. You're not low functioning or high functioning. There's just so many other points within there. Like it just, it negates so much of who he is to classify him on that linear scale as okay, well he falls somewhere in the middle between low functioning and high functioning. No, he doesn't. Like, he's this incredibly intense, hardworking person. But yeah, sometimes he struggles because he can only work for maybe an hour and a half because he's so intense. How do you put that on a linear scale? You, you can't, so if you plot it on that big beautiful color wheel, it just makes so much more sense.

Stephanie:

I wanted you to talk a little bit about some changes through, you know, you've had a very colorful and lovely story and family history and your experiences with, with your family. What differences do you see or would you like to talk about as a parent, having a child with autism, a baby with autism, uh, a toddler, an adolescent, and now an adult. What, what do you want people to know and what struggles as a family do you now, um, experience that you didn't when, when Jake was a baby?

Genine:

It's, it's so deep. I mean, and it is, it's so different from having a typical child, but it is so much the same. I mean, because we do have a typical child, so like we can kind of compare. But you know, there's, there's so much joy and so much struggle in both of them. I mean, we there were in his younger years when when he, you know, was, was not verbal and struggled so hard to, to communicate and to, you know, just get through every day. It was a struggle. There are some times we refer to those as the dark years and when we think of them, you know, they were hard for us, but I can't imagine how hard they were for him because, you know, all behavior is communication and he was communicating, he was communicating. So, but those years were very short. They were very intense and they were very short. And then there were, you know, school was sometimes hard. He would work. He, he has and still is very motivated to make sure he's always doing his best. So in school he would make sure that he was, he always wanted to make sure that his teachers were pleased. He was doing his best. So then when he would come home, he was like, done. I need to go to my room. I need to shut down. I have done my best for my day. Y'all can just, I'm done. Don't expect me to do anything. So then sometimes it was a struggle to get him to participate in some things at home too. It was really, it was really difficult. So sometimes that was a struggle. Now we're transitioning into the, he's an adult, so where it's now, it's sometimes hard. We're seeing it was very difficult when his sister went to college. He still, that's still kind of a struggle. He still doesn't kind of know how to have an adult relationship with her. That's very, she doesn't live at home anymore. He doesn't understand. He still kind of thinks she's coming home. So that's, we still see that as a, as kind of a transition. So I mean, there's so much good in all of it.

Stephanie:

Yeah, it sounds like it. This is, I think, you know, there's a lot of value that you're, you're bringing to this episode as far as just life experiences and being real. About what it looks like to be, you know, to have a family and an, an adult with autism in it at this point. What are your fears?

Genine:

Oh, I can't ever die. That like legit, I mean, legitimately that's, that's the fear because, and that's the fear of any, I'm, I'm not special. That's the fear of any parent with any child, with any special needs. It's what happens when I'm gone.

Stephanie:

That's something that is, is on your mind daily, minute by minute? I can imagine.

Genine:

Yeah. And it happened sadly, and it happened the minute he aged out of school because typically you think, okay, if you're raising a typical child, they graduate high school, they go to college. I mean in the grand scheme of things, you know, maybe they get married and you know, they live, but when you have, uh, you know, an exceptional child with different abilities, then it's okay, what happens next?

Stephanie:

Right.

Genine:

I have to plan for them for what happens next. So what happens if something happens to me? So the minute he aged out of school, I'm like, okay, what do we do? What do we now do for the rest of our lives? And that's what you think.

Stephanie:

I wanted to mention that Jacob was the inspiration for our summer program. Um, we have a program called S.T.A.R.S. and it was, it was really designed around some of the advocacy that you brought to Abilities in Motion on behalf of Jake saying we, we need something to fill in some of these gaps during the summer. And because of that feedback and meeting Jake and yourself, we designed our summer program called S.T.A.R.S. And you know, it's a legacy that I think you can be very proud of, Jake, because so many kids are still going through that program and it's, it's really giving them a huge impact. It basically, you know, addressed the very issues that you brought to us as a parent with an adult or a child in between years in, in high school, getting ready to graduate, addressing some of those, um, building social skills and building social networks during the summer and providing some experiences in the job world. And you know, I'm proud to say that we still do the program.

Genine:

He saw your pictures when we came in here, didn't you?

Jacob:

Yes.

Genine:

So handsome hanging out there.

Jacob:

Yeah, I'm quite photogenic.

Genine:

You are.

Stephanie:

You are, Jake. Um, so at the top of the, the show, I mentioned that April is Autism Awareness Month and I've heard you refer to Autism Awareness Month as Autism Acceptance Month. Can you talk about why you think that is an important distinction?

Genine:

Yeah, I kind of think, I mean when he was diagnosed, I think it was super that everybody was like, okay, let's do Autism Awareness Month. I think if you're really not aware that autism exists, I don't, maybe you're new to the world.

Stephanie:

Right. Well, with numbers like 1 out of 59 children.

Genine:

You've got to know somebody or you've got to, your neighbors got to know somebody, somebody got to know somebody somewhere that has it. Um, I think, I think now it should be more of a push to have autism acceptance. For me, autism acceptance means that, um, more businesses should be pushing to have, um, maybe employees that have different abilities, um, and, and maybe just not autism--to across, uh, this is across the board. I mean, I'm of course I'm going to advocate for him first, but then I'm going to advocate for everybody else. Um, but it's, and it is happening. I mean, I'm so happy to say that across the board over the past, you know, almost 20 years that he's been diagnosed, we have seen things happening. Um, we've, we've flown in airports and gone through TSA where, where they have had exceptions where, you know, we've called them and they've taken him through TSA because they have a special needs program.

Stephanie:

That's interesting. And I would like for you to, to talk about some of the other things like that that maybe other parents are not aware of that you can do to, to help.

Genine:

Absolutely. Yes. TSA--and I can't speak for most airport, but you can call the TSA. TSA has a government program that I think pretty much all airports have. You have to go through a security check. If you're getting on a flight pretty much anywhere domestically or internationally, you have to go through a security checkpoint to get on an airplane. It's very stressful for him to go through that, to stand in any kind of line or anything like that. So the last time we took a flight, I thought, I'm going to check into this just to see if there's any kind of accommodations or anything like that. So we looked into that and there was. What they do is, the airport that we flew out of was Washington,Dulles and they have some. In that. I'll speak to that airport particularly because that's the one we did. There is somebody 24/7, 365 who is trained to take anyone. They will, all you have to do is go to the podium, ask for special assistance. There is somebody trained who is on the clock 24 hours a day. They will take them to the front of the line, walk him through, and the person who was with us was exceptional. They took him to the front of the line, let him take his time. There was no pressure. He was allowed to take his shoes off in his own time. They explained every part of what he was doing when they wanted him down. There was no stress. There was no pressure. It was pretty, it was pretty fantastic. Same thing when we wound up getting into Las Vegas on the way back, they took him through. Everything was stress-free. It was fantastic.

Stephanie:

It seems like there might be more like that, taking that idea and, and expanding it into our own communities. Um, I know you, you've been very vocal about educating our first responders about, about autism specifically and what those characteristics look like.

Genine:

It kind of happened a couple years ago. I think it was maybe five or six years ago. We were on a trip again. We were in the airport in Philadelphia, headed to New Orleans and out of the corner of my eye, one of the security agents, I mean, Philly's a pretty crazy airport. One of the security agents was kind of standing watching him. Jake has what we call "stims." Um, if you're not familiar with autism, they have a lot of, um, self stimulatory, um, mannerisms. What it is, is it's kind of his coping mechanism for if he's kind of stressed. It's a lot of repetitive body motions that just kind of chill him out. Everybody has them, whether you're aware of them or not. We all kind of do it. His are kind of bigger sometimes than most people's, but he was kind of rocking back and forth and bringing his hands, which to kind of the untrained eye looks pretty shady. So if you're a police officer in an airport and you're watching for somebody being suspicious, looks pretty bad. So we noticed this officer kind of zeroing in on him. And at first of course my first reaction is, why are you looking at my boy? But then I realized if this is a person who's trained to clue in on on somebody who might be a security threat, that's exactly what my six foot 270 pound son looks like at that point. So if this security officer, police officer, first responder isn't trained in what autism looks like, am I going to have to bail my son out or explain to somebody who thinks he's a threat? How's this gonna go, go down? So yes, um, that's something that I, I don't know what training any first responder goes through.

Stephanie:

Right. I think it's important to start building those relationships with our first responders as a community because we've, we've seen the stories in the news about, about adults with autism having these terrible circumstances simply because a first responder or an off duty police officer didn't understand that this was a person with autism and it was not a threat. It was just a characteristic of that person.

Genine:

Exactly, exactly. And like you said, I mean, if the statistics are 1 in 59, 1 in 60, whatever. That first responder is, is going to come across somebody with autism.

Stephanie:

It's something that we really need to pay attention to as a community because there's also so many times when, um, a child with autism has gone missing. Because if they wandered out of their home and you know, I've heard you speak in other, um, in other interviews about--why aren't we teaching police about "go to water?"

Genine:

First place you gotta go.

Stephanie:

Have them check, go to, go to the water, go to the, you know, there's, there's typical, quote unquote, typical places a child with autism is drawn to. Um, and that information was surprising to me because I had no idea.

Genine:

Typically that's the first place you would go. Go to water first.

Stephanie:

Any how many lives could we save or how many, you know, happy endings could there be to reunite them with their families? Um, so I'm just interested in hearing, you know, what you, I know you have a plan, like a social program that you've put together for Jake, your own out of your own doing and, and Jake's interests. Um, so, and I know that you brought us a sampling, so let's talk a little bit about Cookie Break with Jake.

Genine:

So, because, um, like I said, Jake has--we--Jake--we like to always call him--like he kind of falls in the gaps. Jake is wonderfully productive for about like an hour and a half, two hours a day. So it would be really, really difficult to ask for an employer to say, you know, can you please employ him for an hour and a half, two hours a day. So what we've done is, you know, and again, we're super fortunate that I'm able to do this with and for him. So we kind of hang out and we volunteer in the community a couple days a week. And the other days that we don't do that, we have developed something called Cookie Break with Jake. So we bake some cookies and we kind of, it's pretty much just a field trip with a sweet ending. Learn what they're doing. And we have cookies with them, right?

Jacob:

Yes.

Genine:

So we have one plan next week.

Jacob:

It's aviary for bees.

Stephanie:

Oh, how exciting.

Genine:

Are you going to put the suit on?

Jacob:

No, I'm just gonna watch the bees from a safe distance, but thank you.

Stephanie:

I agree. Good. Good choice. Jake, I'm with you. I'm with you.

Genine:

Yeah. So we've been to, we've been to a horse farm. Where else have we been? Do you remember?

Jacob:

We've been to Mr. Chris's to give the cookies, that's yesterday.

Genine:

Yeah, we gave the cookies out to the barber shop where he gets his haircut.

Jacob:

Yes.

Genine:

We've been to a lot of places.

Stephanie:

I'm sure the, the folks that you're meeting love to sample your cookies.

Jacob:

Yes.

Genine:

It's just a way to make a connection to the greater community.

Stephanie:

And isn't, um, one of the struggles with, with anybody with autism or at least maybe in Jake's case, building those social networks is the biggest, is one of the biggest challenges.

Genine:

For him, um, social interactions for him are, are really difficult. So it's, it's something that we need to facilitate. That's not something he, he would choose to do on his own. So it's kind of something we need to facilitate. Also, it's, it's kind of a, a win win for everybody. You know, not, not everybody knows what it's like to hang out with somebody with autism. So it also, it opens a connection in, you know, in both ways.

Stephanie:

There's been so much attention being put on autism lately. I hesitate to even say that, that, that people are using it as a buzz word or, or, um, you know, bringing awareness to it like we talked about earlier is great, but let's move towards acceptance and, and what that can look like and what people can do to perpetuate acceptance. And in my eyes, it's, it's simple things. If you're in school and you're a parent, invite that person to your kid's birthday party. It's about acceptance and inclusion. And I think it's just very simple things and really boils down to kindness.

Genine:

Just be a good human.

Stephanie:

Right. So in the media, sometimes I've, I've come across stories or, um, Hollywood celebrities that believe that they can cure autism. But maybe if you can just explain to our listeners why you can't cure autism.

Genine:

Okay. I'm going to, um, I'm going to say this. Here's my, um, disclaimer. I am not an educated, um, professional. I am not a doctor. I am a mom with a kiddo with autism. So whatever I say is my opinion, 100%. Autism isn't a disease. Jake is a Mac and the rest of us operate on Windows. There is nothing wrong with him. He just operates on a different system.

Stephanie:

I think that's a really important and very good way to describe it.

Genine:

It doesn't need to be cured. My blue eyes don't need to be cured because your eyes are brown. The fact that I'm 25 pounds overweight doesn't need to be cured because somebody else is thin. We all operate on a different system. It doesn't need to be cured. Now, I will say this as a disclaimer. We are fortunate in the fact that in Jacob's beautiful spectrum, his prism of colors, he isn't self-injurious. He doesn't struggle with horrible sleep patterns anymore. So there are some issues that some kiddos and adults with autism, some of those really awful co-occurring disorders that I wouldn't see, that I wouldn't wish that they would get some help for. But to say, let's cure autism. I don't want him cured. That was never, and I will say from the jump that is never something like, and I've, and, and I will say that we've met plenty of parents along the way who have wanted to fix their children. Please just fix them, take them and fix them, make it go away, make it better. Make them quote unquote normal. Make them make them right. That is never something we wanted for him. He's fine. It's some of the rest of the world I wish I could fixed. Jake is an incredible man who has a vast toolbox full of, full of tools now that he can work through some of the issues he had when he was younger. We see that now that he's an adult.

Stephanie:

But he still has autism.

Genine:

He still has, he's still got the autism. He's still, you know, he's still Jake. It's not going away. I don't want it to go away.

Stephanie:

That's important and very, um, real for you to talk about. And thank you for being so open about your thoughts on that because I think maybe other parents struggle with those same um, kinds of thoughts. But things are perpetuated by people like a celebrity saying, my child's been cured of autism when really that's not, it's reckless. It's not true for all of the reasons that you said. So I, I'm really glad that you are putting it out there and, and, and, and being very honest.

Genine:

And I will also preface that by saying, there are still some days that are hard and there are still some days that suck. Like it's not, you know, it's, it is not all sunshine and rainbows and roses and butterflies and I don't--like it's, it's still real life some days. And there are some days that are good and there are some days that are bad. But to say that, you know, to perpetuate the false hope that you're going to cure this child is, it's reckless. It's reckless.

Stephanie:

I've seen some articles online about Autism Awareness Month and how the focus is to, you know, light it up blue and shine, you know, national monuments around the world and blue light and, and celebrate autism and all of its, um, challenges and glory. Um, really bring awareness to it. And I've seen some really harsh critics about, um, is that what we need to be doing?

Genine:

There's really big push back in recent years against specifically Autism Speaks because Autism Speaks-- And again, everybody has a different viewpoint. I'm giving you my viewpoint. I'm not saying whether it's right or wrong. Autism Speaks was kind of in the forefront of raising money to help fight autism. And there are a lot of, um, actually autistic adults now who have a very big voice who said, we don't want or need to be cured. Please stop saying that, um, you're perpetuating a notion that we are wrong and that we need to be fixed and they don't like that. Um, and their voices need to be heard because are actually autistic adults and they are valued and they are, they're loved. Um, so please listen to them because, uh, you know, in the beginning it was let's solve this puzzle that--let's fix this. They don't want to be solved. They don't want to be fixed. So I think we have to honor ,you have to honor the actually autistic people who are saying that, you know, you can light it up blue, but honor the voices who are saying, okay, light it up blue, but listen to us, give us jobs, employ us. Listen, when we tell you, uh, you know, to make sure that you take the air dryers out of certain bathrooms, you know, so it's wonderful that all of those buzzwords and catchphrases in you can light up monuments and do all that stuff, but please make sure that there's action behind all of that other stuff and that you're actually listening to the people who have autism.

Stephanie:

What a wonderful way to put that because there's, if you're, if you're out there and want to acknowledge April as Autism Acceptance Month, um, I'm adopting your new, your new term. There's ways that you can really make an impact without making large donations to huge corporate, um, entities. And that is just in your local community. Seek out those agencies that are putting that money directly towards programming.

Genine:

Right and I think that's, I think, I think you're smart to do that across the board. Look at where your money is going. I mean, not just with Autism Speaks. Um, and I think they have, I think they've been smart over the years about what they're doing. I mean, a lot of their funding was going into research. Why do we have autism? Let's start hearing it now. I think they've actually shifted gears. I'm not sure it's, it's just, it's just something that I tend to stay away from. But you know, we are, we are very, very careful about where our time and attention goes to and we stay as local as humanly possible. Again, look at, look at things that are happening right here. Grassroots things that are affecting the lives of people that live.

Stephanie:

We'll you're doing that through through Cookie Break with Jake. You're going to local businesses and local entrepreneurs that have, you know, opened up their doors and said, come on in, Jake, let me, let me show you what I do. Let me show you, you know, the back back of the house kind of stuff that you don't, that you don't normally see.

Genine:

You made jambalaya out with Jambalaya Jay.

Jacob:

Yes.

Stephanie:

Yeah and it's just past Mardi Gras, that's right.

Jacob:

Yes.

Genine:

We were cooking it up.

Jacob:

Yes.

Stephanie:

So Jake, what is your, I hear you, you and your mom make a bunch of different cookies.

Jacob:

Yes. So we made like a cookie shop and I think we um did like a chocolate chip with M&M's and Reese's Pieces.

Stephanie:

They sound very sweet.

Genine:

What did we bring today?

Jacob:

We brought just the chocolate chip.

Stephanie:

Classic, I like it. Thank you.

Jacob:

You're welcome.

Stephanie:

So what advice, if you had any, would you give to new parents that have just learned their child has been diagnosed with autism?

Genine:

Um, wow. That's, it's hard because your first, I think it's difficult because at first, like I will say, when he was first diagnosed, I was relieved and terrified at the same time because I knew something wasn't right, quote unquote. But then I was terrified because I'm like, what is this? What do we do? How does this look? How does this affect everything? And then you go on the computer and you dig yourself into this treacherous hole. So my advice would be put down your device, you know, and it was, it was me researching everything I could into every intervention and getting him into this. And then you wind up driving yourself mad. That's hard not to do when you just want to, you know, do the best thing you can, pace yourself. It is, it is a marathon, not a sprint. It's a lifelong marathon, not a sprint. So pace yourself, um, find a really, really, really good crew of people. Um, not everyone will stick with you through your life. You will lose people fast. Um, and that's hard to hear because people, you know. And there are people who won't be able to cope and not because they don't love you, they just won't know how to handle it. Um, but there will be a really good core of people who will stick with you. Um, you know, and then there will be people who come out of the woodwork that you find, you know, other special needs parents who will, you know, surround you and become your core community of people.

Stephanie:

Have you found that is one of, is that a helpful tool for you as a parent, is to connect with those other parents that have, are experiencing the same thing?

Genine:

Yes. Because nobody, nobody else really knows unless you're kind of, you know, you're kind of there.

Stephanie:

What do you want people to know about autism?

Genine:

That it's not that, it's not that--I don't know. That's a really difficult question. I would...It's the beautiful color wheel.

Stephanie:

Yeah, I think you've, you've already kind of answered that.

Genine:

Yeah, It's not, you know, it's just, it's not so scary. It's not linear, it's not.

Stephanie:

How do you react or, um, what do you think about when you see autism being portrayed on the small screen or the big screen? Um, I know there's, there's, there's a particular TV show where there, there's always been alluded to that one of the main characters is on the spectrum. Is that, does that make you feel good? Does that make you mad? Does that make you think they're not doing, you know, doing it right? What are your, let's talk about that a little bit.

Genine:

Sometimes I, I wish they would have, I mean they've alluded to the fact that he was, I just, I just think they missed the mark. I so wish at some point like they would have said he was.

Stephanie:

Do you think that's because they didn't, they, they didn't want to alienate people? Or, I'm just curious as to why you think they wouldn't have gone that extra step because that character's--is beloved.

Genine:

And I think, I think they eluded to the fact and they didn't put a stamp on him because I didn't think they wanted, I don't think they wanted people coming for them and saying, well, I have autism and I don't do X, Y, Z. So you know, I'm not sure. Like I just think they missed the boat because there are other, there are other identified autistic characters in other shows that you know, but I think because he is such a beloved character, they never identified him because--

Stephanie:

We're talking about the Big Bang Theory in case you haven't picked up on, on our, on our, on our, um, discussion. But you know, it is a little bit of a disappointment.

Genine:

It is a little, I so went from the jump, I was like, well, they please just, will they please just say that he is.

Stephanie:

Well, it's interesting because the show has been on the air for years. Um, and watching it and fans of the show, you know, some of the feedback and discussions I've heard about the Big Bang Theory where like, is he? Isn't he? It kind of, seems like he is, I think he's on the spectrum. Why don't they say it? Maybe he's not. Maybe he's just eccentric. Maybe he's this.

Genine:

Well, and here's the other thing. He may have never been diagnosed. There are, there are, there are adults who don't have diagnosis.

Stephanie:

To your point about--he's just Jake. And what does it matter what caused it? You know, where they to reveal on that show that Sheldon as a person with autism, what would Sheldon do?

Genine:

Nothing.

Stephanie:

Exactly. There'd be no discussion.

Genine:

He would still be the beloved character anyway. So whether or not they, they admitted it or not, it would, I guess it wouldn't make a difference either way. So whatever.

Stephanie:

Is there anything else that you wanted to, to share about autism and your experience.

Genine:

I don't think so.

Stephanie:

Jake, what, is there anything that you would like to share with our, our podcast listening audience?

Jacob:

No.

Genine:

I know what you could probably talk about. So we had a little bit of a debate about person first language and things like that. But um, after following a lot of actually autistic adults, some of them just self identify as autistic or person with autism. So he doesn't, he doesn't care. So he will refer to himself as autistic or a person with autism. It doesn't bother him either way. But we also notice that a lot of people that we follow have really, really deep special interests. So can you tell them about what your special interest is? What's in your special room at home?

Jacob:

Oh, it's a special room is full on my video games, my comic books, and I do happen to have some Legos in there.

Genine:

What about, tell them about your comic books?

Jacob:

Oh, I mostly collect Spider-man comics and I do have some graphic novels and I do have some video games and DVDs.

Genine:

So is it okay if I tell them the special story about when we went to Universal Studios and you got to meet Spiderman?

Jacob:

Yes.

Genine:

So here's one special story. So we went to Universal Studios. Was it two summers ago?

Jacob:

It was about a few summers ago, yes.

Genine:

So two summers ago we went to Universal Studios and we got, we were lucky enough to meet Spider-man. So as we were meeting Spider-man, Jake is, is, um, a Marvel comic, um, we will call him an expert because I, I don't know, I'm not sure if there's anything above expert, but whatever it is, that's what he is. So we got to meet Spider-man and he got talking to Spider-man, about Spider-man things that I don't even know. And they were chatting for quite a long time. And Jake, in this conversation, as they're chatting, Jake knew something about one of the incarnations of Spider-man, that Spider-man didn't know.

Stephanie:

You stumped Spider-man.

Genine:

So he stumped Spider-man in Universal Studios. So I think that's a pretty cool thing to know about Jake.

Stephanie:

I think that would make you an expert.

Genine:

Right, right?

Jacob:

Yes.

Stephanie:

Sadly, I'm not an expert. I don't know the difference between Marvel or DC. They're all the same to me, but I'm sure that you could, you could teach me Jake?

Genine:

Yeah, he'll school you.

Stephanie:

He's shaking his head like, amateur. Thank you for joining us tonight, Jake.

Jacob:

You're welcome.

Stephanie:

It was a pleasure talking with you, Genine. Thank you very much for your-

Genine:

Thanks for having us.

Jacob:

Thank you for having us.

Stephanie:

You're welcome. I appreciate your time and your open and honest discussions.

Genine:

It's cookie time now.

Jacob:

Oh, thank you.

Stephanie:

All right, let's eat.

Outro:

Thanks for tuning in to this episode of Disability Talks. Want to keep the conversation going? Then visit our website at abilitiesinmotion.org or connect with us on social media. And remember, don't diss my ability.