Autism Sibling Love: This story will CHANGE your perspective.

Show Notes:

Ever wonder what it’s like to have an autism sibling?

This heartwarming interview with Sarah Boss dives deep into her experience growing up alongside her brother on the autism spectrum. Sarah offers a unique perspective on the challenges and beautiful moments of being an autism sibling.

This video is a must-watch for anyone seeking to understand autism spectrum disorder (ASD) from the perspective of an autism sibling. Learn valuable insights on:

• Living with Autism in the 1980s: Gain historical context on navigating an autism diagnosis before widespread awareness.
• Building Empathy and Connection: Discover ways to foster strong bonds with autistic loved ones.
• The Power of Acceptance: Explore the importance of celebrating neurodiversity within families.
• Sarah also sheds light on ALAW (Autism Living and Working), an organization co-founded by her parents to provide support for autistic adults.

This video is packed with resources and inspiration for parents, families, and anyone interested in autism spectrum disorder.

👉 Connect with Sarah:

• Website: https://www.sarahsoulboss.com/
• IG: @sarahsoulboss

📰 Are you getting our newsletter? If not, subscribe at https://waterprairie.com/newsletter

👉 Support our podcast and help us share more incredible stories by making a donation at Buy Me A Coffee. Your contribution makes a significant impact in bringing these stories to light. Thank you for your support!

• https://BuyMeACoffee.com/waterprairie

Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

---

 

---

Episode #93: Empathy & Strength: Growing Up with a Sibling on the Spectrum

Autism Sibling Love: This story will CHANGE your perspective.

(Recorded March 28, 2024)

Full Transcript of Interview:

Tonya: Well, Sarah, welcome to Water Prairie.

Sarah: Thank you so much for having me. I’m so excited to be here.

Oh, thank you. I appreciate you reaching out. Um, the topic that we’re gonna be talking about is one that I haven’t brought before. I’ve talked to other siblings who have had a sibling with different disabilities, but we haven’t addressed this with autism before.

And so I was really excited whenever you, you offered this as a possible topic we could talk about. So in our earlier communication, You mentioned empathy, compassion, and belonging that your brother instilled in you. Can you share a specific story or a memory that demonstrates this?

Yeah, absolutely. So there’s one memory in particular that sticks out. I was around 10 years old, which would have made my brother 14. And we went on the bus together. And my brother, when he would, Michael, that was his name, uh, when he would go into the bus, so he had rituals. So he couldn’t, for example, sit down once, but he had, he would go up and down, up and down, up and down.

And then there were always a lot of facial expressed expressions, grimaces, you know, sometimes that would happen, you know, clicking that, that sort of thing with And so we went, we were in the bus and, uh, we got into the bus and he was, he was doing a ritual of one of his rituals. And every, there were a number of people, you know, um, who actually moved away.

And I remember being so struck at that age and, you know, especially when, when you’re 10 and you’re kind of, you know, learning about the world around you, that why would People be moving away when, you know, from somebody from essentially, you know, there are, they were moving away from something that they didn’t understand.

So there’s the fear of the unknown, right. Of the thing that you don’t get, but he wasn’t somebody who was harmful, who was, you know, who was looking to, to inflict, you know, harm to anybody in any way. So this really instilled in me this, uh, sense of empathy and that was Uh, honestly, one of the most beautiful gifts that my brother has given to me that, you know, just because somebody maybe looks different from you at the end of the day, we’re all connected, you know?

Um, and so it, it doesn’t mean that there’s not something beautiful inside and you really shouldn’t judge based upon what you see on the outside. And it wa s painful for me as well to see that and t were moving away, you know from because it’s it’s this feeling right of rejection essentially. And I felt that myself. Not just For him, but I also felt that myself as the sibling, like they’re rejecting both of us because I’m part of this, you know, and that was something that I’ve actually has been a big theme in my life in terms of understanding.

Belonging and finding belonging and just being accepting towards everybody, regardless of ethnicity, regardless, you know, of, of whatever is, is on the outside and because it’s really what’s on the inside, that’s the most important thing.

I think you hit on something that’s really accurate that people may not have thought of before.

Um, and I’ve, I’ve thought of this recently myself. A lot, a lot of our aversions to people or fears, even as you say, is that it’s just not even a lack of education, but just a lack of exposure and a lack of experience, and as time is going by and we’re having more awareness of disabilities and of just differences between each other, I think, you know, it can only help us to recognize that, you know.

You and I don’t, don’t, don’t look the same. We don’t talk with the same accent. We don’t, you know, our hair is very different. You know, it doesn’t mean that we can’t connect with each other, but I think a lot of those, um, almost like a hatred level that comes in, I think it’s a response to fear and not knowing because it’s something that we’re totally uncomfortable with, and we’re not sure what to do. And I say, we just general people in general, we, we, we all have something that we have a hard time connecting with and we respond differently. Some people run right toward it because they want to know more. They were, they’re curious. They want to understand more. I love, I love traveling around the world and meeting new cultures, but I don’t want to just visit for a day.

I want to stay for a week, for a month, because I want to learn why, why we behave differently. Because it’s the same mindset. We just respond differently. Because of our cultural background or experiences, but we don’t necessarily do that when we meet someone who may be in a wheelchair or, you know, instead, we just kind of walk on by and we don’t take that time to stop.

And it’s part of what I’m hoping to do with the podcast is that as we’re exposing people to, to new individuals and new situations that they haven’t personally had a chance to interact with. Hopefully, they’re opening their mind a little bit more. And decreasing those fears and those concerns there. Um, I hate that you and your brother faced that, but I know a lot of our listeners have been in similar situations.

I meet parents all the time who won’t leave their home to go out in public because they just get tired of those stairs or those very inappropriate comments that are made and not everyone has the strength within to say, you know, come, come on, come on over and, and, and ask us any questions. Well, you know, I, I have met some who can do that and they, they would rather you come and just.

Ask questions, even if they seem rude, just because it’s going to help you understand more, but that’s an invasion of your space too. So you don’t always have that. Well, your family, what you, what you’ve told me about, about what your family has done in response to your brother. So he was four years older than you were.

Before I get into my next question, I wanted to ask you, When was he diagnosed? Was he a young child or was he older? Cause I’m thinking.

No, very young. Uh, he was, uh, probably around four years old. The story that my parents told me was, it was about that age where you normally take the kids, you know, to preschool and then you, you drop them off.

And what happened was they took him and they tried to drop him off because they didn’t know at that point he seemed, you know, everything seemed totally kind of status quo. And he cried and cried and cried and cried. And eventually the teacher called and said, you have to come back and get him. And that’s when they knew that something was, was off.

And so, yeah. Was shortly after that that he was diagnosed, yeah. About what year would that have been? Have, let me think. Um, he would’ve been 47, so if he was around four, that would’ve been, uh, 43 years ago. So that would’ve been in?

Yeah. So it’s 24 right now, so 80.

Yeah. Yeah. Yeah. Around 1980’s. Yeah. Yeah. Exactly. Yeah.

The reason I’m asking is autism was not readily diagnosed until later into the eighties. So he was, he and your family were fortunate that they had a doctor who knew what they were looking at. And we’re able to help identify what was going on, just the more people that I’ve talked to, that was kind of a gray area of time where there were a lot of questions still.

And we really didn’t know a lot. And so much has developed since then. But, um, but that’s, that’s when, when, when you had mentioned earlier about his age, it, it made me wonder, you know, he was one of the ones who was able to get that diagnosis earlier.

Yeah, I’m sure it didn’t happen right away. I’m sure that they probably went to a few.

I mean, I would go back and check with my mom, but I’m sure it wasn’t an immediate thing that they probably had to go and see a couple of, you know, doctors before they finally got the diagnosis. That’s probably it.

When I’ve talked to other adults who have been diagnosed as adults because of the same of that gap in time where they really didn’t didn’t understand what it was and it wasn’t recognized, but they later were able to get a diagnosis.

So, they went years and years without a name. That was, that was the only difference. The adjustment time that they needed, they were getting their needs met. It was just this unknown out there. They really didn’t know, or it was a misdiagnosis. It was called something else. But as we learn more as a population, they kind of were able to get a better label as far as what it was.

And not everyone needs a label. Um, I know for my family with my daughter, when she was, she was little, she’s, she’s visually impaired. I just needed a name because that helped. As we talked about people responding funny. As, as the wall meeting grandmas who would come by in the grocery store and go into comment about my child, and then would back up and ask what was going on with their eyes.

It was a lot easier to have a name of something just to say, well, she, she has albinism and then they may not have known what that was, but at least it gave me something easy to say, and not to have to explain everything. So, I think sometimes it does help to have to have a label as much as we don’t like to label each other.

It does help to give even our kids a tool to be able to say. You know, this is, this is why I need some extra help, or this is why I need to wear my headphones. Um, and everyone’s gonna be different on that. So parents that are listening, I’m not telling you to tell your child that they have a label. That’s not, not what I’m saying at all.

But as a parent, sometimes it does help you to kind of know as you’re looking for support organizations and all to know where you’re looking and where you’re getting help. Well, so given the time period that you were in, your parents had did, did, well, I would say they didn’t have, they, they didn’t have as many supports as are out there today. And so you shared with me, and I don’t know if you say it as A Law or ALAW. But tell me what that is and how did it get started?

Yeah. So ALAW stands for Autism Living and Working. And so what happened with my brother, his journey is that when he got to be a teenager, he could no longer live at home. He became violent and it was not, uh, and my, my parents didn’t honestly know how to navigate the situation. They tried different resources. I remember at one point we all went to children’s hospital, saw a therapist. It wasn’t, but you know, it’s, it’s not. It’s not your, your atypical behavior because you know, he, he has autism.

And so there was medications as well, putting them on medications, changing the medications. This was a whole long, you know, process. And so what they did at one point was they found a school and they sent him to the school. It was called Devereaux. And he was there until around, I would say from maybe age 15 to 24.

He was very, very young. Very unhappy at the school because it was, you know, kids who had all sorts of different developmental disabilities. It wasn’t just autism. I don’t really feel like they necessarily knew the best way to support him, but he was quite vocal about how unhappy that, you know, he was, and it just, it wasn’t an option for him to live with my parents anymore.

So what happened was what was founded a law. They, my parents met. Two other parents of, uh, autistic who had autistic boys. One of the parents actually has a, uh, both a son and a daughter with autism. And so they came together with the parents to ask for funding from the government and with that funding, they created a law autism living and working, which was this organization to support these, these men, they got a house in Phoenixville.

So, which is about 45 minutes outside of Philadelphia. My parents were living in Philadelphia and then they also had, uh, staff that were there 24 seven. So the staff to cook for them, to help them with things like brushing their teeth. Um, one of the, one of the, the men did not have speech. My brother was quite talkative.

I mean, he would talk your ear off, you know, um, about the same things typically, but he, he would talk. And so he really needed, uh, one, the one, uh, the man who did not talk, um, Matthew, he would, he would type like when he wanted to say something, he would type it on his, um, on his, uh, you know, his computer. But so they had staff there to basically To, to help them and then also to do activities with them to help them to integrate as well into society.

You know, like Meals on Wheels or, uh, my brother was working, uh, a few days a week. I forget what he, maybe it was CVS. There were a couple of different places where he did simple things. You know, if it was like stacking boxes, washing dishes with. I think it’s something that he did at one point, but you know something to get them.

So they’re not, they’re not in the house 24 seven, um, there was one staff member that would take him to plan a fitness a couple of times a week so that he would, you know, make sure that he got exercise. So that kind of support, so that was all, and that was all funded from the, by the government. That wasn’t an issue at one point where Republicans took charge of, uh, uh, you know, because they wanted to cut the funding and so they had to go, my parents actually had to go to court, you know, in order to petition to get a lawyer.

Lifelong funding, because that’s the other thing. Once the parents have passed, you want to make sure that your kids are supported right through, through all of that. So, so that’s what that ended up being.

Wow. Yeah. We’ve talked, um, last season we had, Amit Chawla on to talk about. Just that lifetime planning for the future.

And I have someone coming on this season, late at the season that we’ll be talking about as well. Um, very important because that is a big concern that most of our parents have. What happens after I’m not here anymore? How, how can I make sure that my child’s ready and able to be cared for? So I’m glad you mentioned that.

Excuse me. So you mentioned some of the things that they’re doing with a law. I really like that idea. And you had told me before about Meals on Wheels. So what is why is it important for them to be out in society? You mentioned a little bit of that, but what are the benefits that it brings? And is it just for the guys themselves, or is it for others as well?

It’s for, I think it’s just as equally important for other people, maybe even more so because, uh, you know, there’s so many times when I would, as a sibling of somebody who had a disability, when I would try to explain to them, okay, my brother has a developmental disability.

People wouldn’t understand. Even when I would say, okay, he has autism. They really wouldn’t get it. And they didn’t get it until they met him. And they had a lot of times these preconceived notions and, you know, autism, there’s a huge spectrum. I used to be a teacher, French and Spanish, you know, high school teacher in middle school.

And I had some kids who were on the spectrum, very high functioning, you know, but we’re talking Asperger’s what my brother, my brother, very, you know, obviously different, But with him, when people met him, they interacted with him. Then they understood. And I feel that that’s really important. First of all, in terms of promoting tolerance, in terms of promoting connection, acceptance, empathy, and people need to understand that different is not bad.

I mean, because these men were super gifted all in their own way. I mean, my brother had this. Passion for trains. He remembered every single train and he went to Paris when he was maybe six years old and he remembered every single station. And when I would go to Paris, he would say, make sure you ride this line and make sure you do this station in the station, you know, like a huge, very, very, very keen memory.

So I feel like it’s, yes, it’s important for them also not to be completely isolated. Everybody as humans, we need connection. Everybody, it’s, it’s, it’s a, it’s an innate need. So I feel that it’s really, really important for, uh, you know, for, for people who have developmental disabilities, yes, to be integrated into society and for us to see that different is beautiful too.

And, you know, cause there again, as we had said before, there’s this perception of the other and the other is something that we fear. We fear what we don’t know. No, let’s move towards connection instead. And embracing, you know, in the spirit, more of, of love, the thing that we don’t understand, you know, I think that’s super important because as we do this also as humans, even this most basic thing of, of, you know, connecting with somebody, for example, you know, who has a developmental disability and actually going and, and having, having a conversation with him.

There was a man who used to come and, uh, he would with Michael, like he would come visit once a month, he would take him out on walks and he would, his name was Henrik Just talk to him and interact with him, and that creates a ripple effect in our world. It creates a ripple effect of healing, of tolerance.

You know, I know it seems like a small thing, but those little actions really do, uh, they reverberate in, in terms of the, the collective society. So it’s, it’s very important.

Yeah, no, I completely agree on that. So as our parents that are listening, the rate of autistic diagnosis is, is much higher now than it was when your brother was diagnosed.

So a lot of our listeners may have a child who’s on the spectrum. What would you, what would you tell them as far as, um, how to find the right resources for their children? A lot of them aren’t sure where to get started. And now your family went out and created this from what, you know, from what you’ve seen, how would you advise them on getting started with trying to get that support?

I think the most important part, the first piece is the community connection. So making sure that you yourself as a parent have the support that you need.

So I would say connecting first and foremost to other parents or siblings or people who have, you know, who have family members with a developmental disability and see, okay, what was your journey? How did you handle it? You know, it’s very, I think that never underestimate the the power of word of mouth.

And so I really feel that, you know, when you, when you have a need and you put that out into the universe, the universe will bring you support. And I think it’s also very empowering to just see other people who have been through that, who have been through the experience. So you know that you’re not alone, you know, so you know that there, and so that you too, it’s so important that the parents have support.

For themselves as they go through this journey, not just because you’re in this caregiver role, right? You, you just are. That’s naturally in the caregiver role. It’s beautiful, but it also can be very, very draining. And so you need to make sure that you have yourself care and you have all those practices in place to make sure that your cup is being filled.

Cause if it’s not being filled, it’s going to be hard for you to, to fully, you know, give as well to your child. So that would be my first and foremost, just, Uh, would be my piece of advice is to really tune into your own network and talk, you know, communicate, talk to the people who have had, um, who have had family members with these, with disabilities and see what their journey was like, see what their recommendations are.

So last week we were talking about, um, neurodivergent children and using music therapy and listeners. If you were listening to that one, we told you to let us know if you’re having trouble finding resources. I want to repeat that again for this one. If you’re out there feeling isolated and you don’t know where to start.

Leave a comment on this or send us an email, let us know. And we’ll, we’ll get you connected where we have connections. And I think it’s, it’s so important that you have those connections with, with other parents. Um, not always with specialists. Sometimes you just need to talk to another mom or another dad and to just share those, those like experiences that you’ve had.

And as we said earlier, The spectrum is such a broad range. No two children are going to be the same, but that doesn’t really matter because you’re looking for a parent who you can connect with. And, um, and so, so that self care part and making sure that you’re taking care of yourself is very important. So thanks. Thanks for emphasizing that.

And I would also say don’t underestimate the power of self. Of, uh, social media for connection because nowadays, you know, social media, you go, for example, on Facebook, there are groups, there are community groups you can find, you know, support in terms of, okay, there is a Facebook group. I’m sure for parents who, you know, children with autism, you can, you can find that.

There are quite a few. Yes.

Yeah.

And, um, and I’m glad to help you find that if you, if you don’t know how to do it. Just let us know. We will, we will get you connected. We’re, we’re collecting as many resources as we can to try to help you as a parent be, be stronger and be able to, um, to find the path that you and your child need.

So, this, this season, we’ve been, um, working as part of the interview with having each of my guests. Complete a statement that has something to do with what we’ve talked about. So I, um, and I’m, I’m having a hard time explaining that with, with each of these interviews. So maybe by six months into this year, I’ll, I’ll, I’ll get this down.

But, but listeners, you’re, you’re starting to hear a little bit more on this. Um, and some of these statements will be used, um, to help promote the episode, but, um, but I’ve asked Sarah to answer three for me. So I’m going to, Say the statement that I’m going to have, Sarah, I’m going to have you repeat it and then finish the statement for me.

All right. So the first one is having a sibling with autism has shown me that the most important thing is

having a sibling of autism has shown me that the most important thing is empathy and connection.

Right. So the second one for families navigating a loved one’s autism diagnosis, the best advice I can offer is to.

Hmm. Uh, the best advice that I can offer is to seek support in particular from other and connect with other parents who have been on a similar journey.

All right. The final one, when it comes to individuals with autism, it’s important to remember that

it’s important to remember that each individual has their own beautiful magic inside just waiting to be discovered and their own gifts to share with the world.

So get curious about that.

We’ve been talking about your experiences with your brother, but you have a whole life apart from that. So tell me about any projects you’re working on, um, how our listeners can connect with you.

Oh, thank you. Yeah. Well, I, um, am a, a, an astrologer and a life coach and also a holistic healer.

So I combine astrology with life coaching to help people who are navigating. Major life transitions to find self empowerment and create the life of their dreams. And so I was living in China. I’m now in Philadelphia for for now. Uh, and so, yes, if there’s anybody who is seeking support when it comes to navigating a big life transition would love to connect.

I’m on. All the social media I do a lot of videos on instagram in particular which talk about what’s happening in the cosmos Energetically how you can work. We just had this big lunar eclipse that happened in libra. So, you know how to work with the energy Also videos on navigating big transitions in your life On finding peace, you know, in the moment, also when it comes to transitions, the things that you, you can’t change, you know, so finding peace and surrendering to, uh, to, to change and finding gratitude in the moment.

So you can connect with me on social media. My social media handle is Sarah S A R A H S O U L boss. My website is https://sarahsoulboss.com and I have a newsletter, which I publish twice a month with more tips for ways to really connect with and align your energy. So please reach out. I would love to connect.

We’ll put the links to, to, to all of that and the show notes too. So if you’re listening on the audio, you may have to go to the website link to get to that. I’m having a hard time getting the show notes to show up on Apple podcasts, but, but there is a link to the webpage everywhere else. It’ll be linked at the bottom with the video or on the webpage itself.

So, Sarah, thanks. Thanks for sharing today. I appreciate you bringing a different perspective here, but, um, but I appreciate you being open and just sharing to the creativity that your parents went to, to help support your brother and to give him a full life and not just to be sitting on the sidelines. So it’s really exciting to know, even being early stages.

With working with adults with autism that they had the forethought to be able to do this and to give him that and to, I’m sure it’s impacted what’s happening today with other families. So thank you for sharing that.

Yeah, thank you so much for having me. And also just for giving me the opportunity to share a little bit about Michael’s story.

I feel that, you know, in his memory, it’s a, it’s a beautiful thing and hopefully it can help others.