Some of you may know Spencer from my other training videos or articles. He’s made various appearances over the years in my work, but today he is twenty-two years old and entering medical school in the fall. Because of COVID, we’ve been blessed to have some extra time with him before he heads off into a new chapter in his life.
I wanted to talk with Spencer about what it’s like growing up with a brother with autism. We talk about some of the hardest parts of our family’s journey, whether he ever felt jealous of Lucas, and how we dealt with Lucas’s brief aggressive period. Spencer even takes the time to share advice for other siblings of autism.
I think that siblings of kids with autism or siblings of kids with disabilities are some of the most resilient and mature children out there. Siblings learn compassion at a young age, and parents can be proud of the relationships they can form with each other as a result. No matter what the unique circumstances your family finds itself in, there is room for all of your children to grow up to be happy, safe, and independent.
- The best advice I received for how to create a strong family unit by adapting family configurations for our needs.
- One of the creative ways we respected Spencer’s need for boundaries and privacy.
- How talking about autism helped Spencer on his medical school application.
- What our family has decided to do about guardianship for Lucas.
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— #014: Dr. Rick Kubina: Fluency and Precision Teaching
— #035: Autism Diagnosis, Waiting Lists & Early Language Development with Dr. James Coplan
— #028: Autism & Medication with Dr. Michael Murray, Psychiatrist
— #004: Is it High Functioning or Low Functioning Autism?
— Verbal Behavior Staff Training #1
— Verbal Behavior Staff Training #2
— Behind the Schoolhouse Door: When My 5th Grader Got Detention, I Sent His Teacher This Book
— The 3 Things Every Parent Wants for Their Child with or Without Autism
— Behind the Schoolhouse Door
— Getting Things Done: The Art of Stress-Free Productivity Kindle
— The Siblings Guide to Autism
— Autism Society of America’s Sibling Guide
Transcript for Podcast Episode: 085
Siblings of Autism: My Interview with My Son Spencer Barbera
Hosted by: Dr. Mary Barbera
Mary: You're listening to another episode of The Turn Autism Around podcast, we are on episode number eighty-five. And today I have my son, Spencer Barbera, on the show to talk all about the role of siblings. And it's a great show. So let's get to that right now.
Mary: So thanks for being with us today, Spencer.
Spencer: Oh, thank you for having me. I'm really excited. I know we've had this in the works for a little bit, so I'm really glad we could fit it in.
Mary: So I always start with the same question. Describe your fall into the autism world. But you were born.
Spencer: I was born at a very young age.
Mary: You were born. You already were in the autism world. But do you have any early memories of when autism, you knew the word?
Spencer: Yeah, probably my earliest memory would be. I guess this is a false memory. It's retrospective. But I remember you telling me that when I was three, I could say the word autism like that was a regular old part of the vocabulary. So I think that that if you dissect that a little bit, it sheds a lot more light on, you know, my home environment and the frequency that the word autism. And that that was Lucas and that that was examined. So I would say from a very early age, I've just I've always been engrossed with my own personal experience of having a sibling with autism.
Mary: Yeah. Because you were 18 months old when Lucas was diagnosed at the age of three and you guys are 18 months apart. So Lucas started therapy in our basement. And so I remember talking to a babysitter and saying something like, you know, I don't know if I should sit Spencer down. And she's like, oh, he uses the word autism with me all the time. And he totally understands what's happening at 3.
Mary: So we never had the talk about autism or anything. So why don't you for those parents and professionals listening that have seen some of my writing about you and I've done some video blogs, I can put a couple of those videos right here in the show, notes under episode number eighty-five. But you catch our listeners up as to what you're doing now, how old you are and where you're up to?
Spencer: Sure thing. I'm currently talking to everyone in the video studio here in Pennsylvania. But for the last four years, I've been living in New Orleans, going to university, and now I'm 22 and I'm starting my next big journey. I'm going to medical school also in New Orleans for the next four years. That's sort of where I'm at right now. I don't know exactly what specialty I want to go into or I'm leaning more towards procedures, but I don't know. So I'm excited to get back there. I'm leaving. I'm starting school in twenty-two days from when we're recording this. And I think it's a good recap of me.
Mary: Yeah. So one of the true blessings of COVID, if there can be any blessings of COVID, is the fact that Spencer moved home with us for the past three months. I've gotten to spend a lot of time with him. So thanks for carving out time, your last few days up here to do this interview on siblings.
Spencer: Oh, no, I said this before, but again, thank you for having me. We've kind of had this on the back burner for a while. I'm really glad to be here.
Mary: And we are going to talk about siblings and Spencer's sibling journey and talk about how some other siblings may be feeling and maybe give some tips that might be helpful for families who have siblings involved in the autism world. We're certainly not experts on siblings. We haven't really you know, you don't have any really close friends who are siblings of kids with autism.
Spencer: No, that's right. That's right. I do not.
Mary: So we are going to use some resources. But before we get to the sibling topic, for those of you that are newer to our world here, Spencer was a part of many video blogs. And my book, my first book, The Verbal Behavior Approach. He was eight years old. I think when I wrote that, when I published that, and now he's twenty-two and he'll be twenty-three by the time book number two is published, which is anticipated for April of 2021. So you've read about him probably or heard about some of the antics.
Mary: But just to catch you up, for those of you that don't know anything about Spencer, is he was a part of the article that I published with Dr. Vic Cobina, which we talk about on podcast number 14, teaching tacts to a child with autism. Spencer was involved because one of the procedures in the study was to make sure that the tacts or the labels that we were trying to teach Lucas were appropriate and were age appropriate. So we had Spencer as well as their two cousins, Garrett and Phillip in the preparation for the study by me holding up labels. And then if one of the three of the typically developing children couldn't label it, then it was thrown out from the study.
Mary: So I actually have a video of Spencer when he was like, I forget how old he was then, maybe six years old. So I'm going to try to find that for the show notes as well as there is a training video on YouTube where I went through and I held up and I said. What is a clap your hands, touch your nose. What flies in the sky? And it was verbal behavior training and that that YouTube clip, I've got to check how many views we have so far, but we're going to post that in the show notes as well. So we have some videos of Spencer's past, participation in our journey along here. I also wrote a I did a video blog way back.
Mary: It was called When My Fifth Grader Got Detention: here's the book I gave his teacher. And that book, which is available online for free, which again, we can link in the show notes, is called Behind the Schoolhouse Doors, Eight Skills Every Teacher Needs. It's all about how to be positive. And Spencer, like, never got detention. But he and his friends in fifth grade were laughing in library class. And so she made them stay in for recess.
Mary: And I was really not very happy because if you can't, like, have classroom management abilities and be positive with typically developing fifth graders and give them detention, it's just crazy. So I sent this book about how to be more positive to not only the library teacher, but the principal and the regular homeroom teacher. Do you remember any of that?
Spencer: No. But I'm glad we just told all the listeners along with me, but no. Well, no.
Mary: So we're going to link that in the show notes. But if you're not anywhere that you can access the show notes and you can just search. Mary Barbera detention and you'll probably get the video blog with the book download link. I actually had to buy the book, but now a lot of these older books are available for free download. So it's a great book for both parents and teachers, all about how to be more positive.
Mary: So, OK, now that we have that and all of that will be in the show notes at MaryBarbera.com/eighty-five, which is going to be your episode. OK. So siblings. So we just have two kids. Lucas is 18 months older than Spencer and some families have multiple kids with autism. Some families have multiple kids. We are just really gonna talk about Spencer's journey and some of these tips and resources like the Autism Speak Sibling Guide, which are available for free.
Mary: And the Autism Society of America also has some really good information about siblings. And I'm actually going to use the Autism Society's bullet points of some of the stressors of siblings and kind of go over that and see if you have any kind of stories or situations where you were faced with any of these stressors. So embarrassment. A lot of siblings are embarrassed by their sibling with autism, especially around their peers. So do you remember at all feeling embarrassed by Lucas?
Spencer: I think that in general, kids and teenagers have a lot of embarrassment. Just growing up, like even of neurotypical siblings, like you would have embarrassment. So I think it would completely miss the mark if I said no. I can remember, though. I mean, I feel like I'm much more embarrassed of things that my father did. Than my brother. But, yeah, I think there have been there have been instances where I was embarrassed.
Spencer: I remember one time we were like, you were trying to we were trying to get Lucas to use the men's room because he was getting to the age where it was like we just wanted to segue. Because you would always bring him in with you. And then we were at the pool and I was younger.
Spencer: I don't know how old I was. But you were like, you come up to me with him. And I was with my friends, like close friends of mine. And you were like, Spencer, I need you to take your brother to the bathroom, kind of thing. And I just remember I kind of flared up and I gave you a lot of lip. I was like, I'm not doing that. Like, blah, blah, blah. And if you walked away, my friends were like, dude what was that about. You can just go do that. It's not a big deal. But I was, you know, at the time, it's amplified by everything else that you have going on as a child and all the other perceptions and those sorts of things. You can't necessarily see clearly in your head.
Mary: I remember.
Spencer: And I know you were mad. Yes. You were mad.
Mary: Why don't I remember that episode that I do remember being at a lecture about siblings and I don't remember who is giving the lecture, but they said especially in like the tween years. Yeah. That embarrassment is just a part of being a young child, a young teenager or tween. They said even if, you know, their parents are like you have everything going for them are, you know, wearing the best clothes.
Spencer: Yeah, no, I absolutely agree with that. Absolutely.
Mary: And I do think that in our situation there is, of course, kids all over the spectrum, some with very, aware and Lucas is pretty impaired. So he is not aware of, if someone would make fun of him, call him a name or anything. But I would always say that I would be aware and it would hurt my feelings or hurt Spencer's feelings to hear something or say something. Do you remember anybody ever calling him a name or talking about him in an unpleasant way?
Spencer: I remember in the second grade I was on the bus and a student who was a year older than I was had told me, like, I didn't really realize what the word was, but I knew what it sounded like. And then I came home and I was like, Mom, they were calling Lucas a word? I think it was like pop tarted. Yeah. I didn't quite get it. You're like, no, it's something else and that kind of thing. But I mean, in the second grade. But that phased out. From what I knew very quickly.
Mary: Yeah. And you and Lucas went to the same public school for most of your lives. And in that environment, it was public school. But, you know, all along the school was great with Lucas. Very proactive in anti-bullying. And, you know, and I think because Lucas was more impaired, little kids were treating him almost like they were a junior therapist, you know, they would. Yeah, like mother him or be nice to him.
Spencer: It was. Yeah, I can definitely see that because of the degree of his impairment, it was just like.
Mary: Yeah. Like nobody's gonna, you know, make fun. Yeah. Did you ever feel like a junior therapist ever? Like that you were responsible for like teaching him or like the bathroom was one incident. But did you ever feel like I've gotta?
Spencer: I think at times certainly. I'm having trouble thinking of specifics. I remember just last week I was because he really likes the iPad. I don't know if the listeners know that he's a big YouTube guy, you know, and I was trying to show him some kind of shortcut, like but he doesn't know any of the...He does these big work arounds to get to the videos that he wants and he'll do, you know. And so I was trying to show him some kind of shortcut there and trying to teach him that he wasn't having it. But I was like in that sense, sort of it just made me think of it when you said teaching things. But I think growing up? Yeah, definitely. There were definitely instances.
Mary: Yeah. And I think another factor was because I became a behavior analyst, wrote a book and was lecturing on autism, like you got sucked into the whole autism world, probably in a bigger degree than most siblings.
Spencer: I mean, I would say that, but because I mean, I never knew anything different. So for me, it's hard to compare.
Mary: Yeah, definitely. And I think even I've stated somewhere that I think the most embarrassing incidences with Lucas for me have revolved around bathroom issues, toileting accidents at the pool when he was young. And then any kind of aggression or self-injurious behavior in public because, you know, even some of the minor behaviors like bringing him to church and if he'd make loud noises or say something inappropriate.
Spencer: Or belch. Where they had the acoustics.
Mary: It still is, you know, embarrassing at times because he is not aware that you can't do certain things in public. But for the most part he is, I mean he's fully toilet trained and he's you know, he's clean and fairly neat. Like when we're out in public, he's not aggressive anymore and so bringing him out in the community is actually fine. The other embarrassing thing. I don't mean to harp on embarrassing, but Spencer, you were always involved in musicals and plays and that sort of thing. And so it was hard. Or Spencer when he was especially when he was younger. But this is live theater. You don't want your brother who might yell out something inappropriately while you're live on stage to even be there.
Spencer: I think that was part of it. The other part was he doesn't like to be constricted or restricted, I guess would be a better word. And so to be in an auditorium with 700 people for two and a half hours in the dark and have to just sit there. So part of it was definitely that, you know, a fear of some sort of disruption.
Mary: Oh, and you were trying to remember lines.
Spencer: Not so much for me, just for the other people who went there that night to just sort of enjoy what they came there to see. Because they're trying to get away from, you know, they're going there to escape. And the people who've worked so hard for the show to be in it. I guess there was there was an element of it, but really, it came from a fear of him just not him being restricted in that seat. Wanting to leave. Being able to.
Mary: Yeah. And because he doesn't really comprehend a ton of language, he wouldn't understand the plot. He won't understand anything.
Spencer: The orchestra, he would be covering his ears.
Mary: Right. So it was just a whole reason why. Which actually leads to another point is it's hard to do things as a family unit. Especially if kids are, you know, have outbursts or don't comprehend things. I know one of the pieces of advice from Dr. Copeland who diagnosed Lucas. And Dr. Copeland is on one of our podcasts, when can link back on the show notes as well.
Mary: He had some good advice when he diagnosed Lucas. And I don't know if you ever heard this, Spencer, but he advised that we should do stuff with me, my husband and Spencer. Me and Spencer. Me and Lucas. My husband and Lucas. My husband and Spencer. Different configurations because really all four of us enjoying a movie? Lucas isn't going to enjoy that. All four of us going to Europe on the plane and staying in hotels?
Mary: So I know that's a factor for many families, but I think we as a family, just given our circumstances, we really took that advice pretty strongly because there were lots of things that we did without Lucas or just me and Lucas would stay home and you and dad would do stuff.
Spencer: Yeah, just me and dad. That's the one permutation of that is just me and Lucas. I mean, we don't go to Europe or anything, but we'll do stuff with just us.
Mary: Right. So now, I mean, Spencer's been driving for a very long time, but even during COVID, I mean, you can, thank goodness, you can handle Lucas. You could stay overnight with Lucas. And Lucas is very happy to be with you.
Spencer: Sometimes. But sometimes he's like, oh great Spenser's here. He's gonna make me walk. I'm like, come on, let's go on a walk. And he's there with the iPad and he'll act like he doesn't hear. You heard me, come on.
Mary: Yeah. And I was nervous when you went first went to college that Lucas would really have a problem with that. But Lucas seems to be OK as long as he has his routine. He really is not as affected by people coming and going as most kids. Even typically developing kids would express more of issues with having a sibling leave.
Spencer: He probably likes having the bathroom to himself.
Mary: Do you remember feeling jealous? Was just another stressor. Jealous of the time we and the focus that we've spent on Lucas?
Spencer: No, no. I feel like I've gotten my good cut of a pie in terms of resources. I don't feel that. I mean, I can see how that would be very different in other experiences for particularly people who also have additional siblings. Right now, it's just, you know, it's just Luke and I. But if you add a couple more children and everyone's share gets diluted down, then maybe I could see that a lot more. But, in terms of my specifics, my situation. No, I didn't feel that way.
Mary: OK. Have you ever been the target of aggressive behaviors?
Spencer: From him? Yes.
Mary: And was that scary when you were younger?
Spencer: Yeah. Yeah. I think that that was scary. I mean, I'm very fortunate that he and I, we're the same height and we're so similar in age that, you know, my strength sort of parallels his. So I've never been scared of him overpowering or I wasn't back when he would have aggression. I never really had the fear of him overpowering me or hurting me severely. But it is scary when he would get revved up and angry and be biting his finger and hitting his head and grabbing.
Spencer: And I mean, that's very scary behavior. But, you know, if I've learned one thing about I mean, I haven't started medical school yet, but I've learned a little bit about neuroscience and also from my mother, who was a nurse on the spinal cord injury unit at Jefferson for many years. I don't think that that's him when he has those episodes. He's not embodied. He doesn't realize to the extent what he's doing.
Mary: And he hasn't had aggression for almost four years any aggression towards others. He still has occasional self-injurious behavior. And one of that, I think one of my very favorite podcasts is with his psychiatrist, Dr. Michael Murray. That's episode number twenty-eight. MaryBarbera.com/twentyeight. And really we found Dr. Murray when Lucas was 18. And that was really a great thing. Because with a cardiac medication for Lucas is on a nervous system dysfunction. It really got rid of the aggression and reduced to self-injurious behavior.
Mary: So up until that point, when Lucas was 18 and Spencer was 17. Probably in the teen years is when Lucas started with aggression and ended aggression. Thank goodness. But it is scary no matter what the size of the child is. And in my opinion, we shouldn't just accept aggression or self-injurious as part of autism. It shouldn't be a part of autism. It doesn't have to be a part of autism. We just have to, for each child, get to the bottom of why they're having it and maybe a correlated medical condition like it was for Lucas.
Mary: It may be in need of better behavioral techniques, but in the end, it's never time to stop and just accept that aggression. Because he is over 200 pounds now and if he had aggression now. And you're not anywhere near two hundred, but you're the same height. But he gets very strong. So we just have to always, you know, keep our eye on the target of no aggression and very little major problem behaviors.
Spencer: Also, it's so, you know, if you do have these aggressive tendencies, it's restrictive on what you can and cannot do in life. So, you know, I mean, now we can almost worry. We pretty much worry free. We could go anywhere with him, do anything, go to any restaurant. He can go over to our grandparents� house and sit and chill out and those sorts of things. We can have babies by him and that sort of you know, he has so much more agency and so much more freedom where he doesn't have the aggressive tendencies.
Mary: Yeah. So, OK. Getting back to our list of embarrassment, being the target of aggressive behaviors that siblings sometimes have to deal with. How about, have you remembered feeling frustrated over not being able to get a response from Lucas or engagement? Or when you were younger, do you remember being upset that he wouldn't play with you?
Spencer: No, I would say no to that. The frustration I had felt, but not at his limitations, if you could call them that. I more so felt frustrations with destruction of my belongings and property. When I was little, I remember I had these beautiful pair of Hulk hands like, you know, the big green Incredible Hulk. And they were these big day, early 2000s foam gloves that like you put on. How old was I? Six maybe? You put them on and they make the noise and they're kind of like boxing gloves, but it's just these big green foam gloves.
Spencer: And I remember getting home one day and all the knuckles were just chewed. I mean, he always loved to pick and tear and the hands were just so, they were just completely destroyed. And I just remember the heartbreak, because when you're six, that's such a big deal. Like, if he did it now, I'm like, whatever. Things that were my toys, I like them. And I was so upset with the other things my.
Spencer: I remember I got home one day and this was when I was very young. I was little like fish tank. A fake fish tank kind of thing in my room. Oh real? OK. Yeah. And I walked into my room and it was like the wallpaper had been torn off the walls. Everything was open, everything was a mess. The fish tank was all over the floor and broken. And there is the culprit, Lucas Barbera, sitting cross-legged, criss cross applesauce in my bed just stimming his mind out. And I was like, all my stuff like that. Those were really the frustrating points that I recall now, as a twenty-two-year-old.
Mary: And I remember at some point after six, when he was so upset, if Lucas would get into his room and destroy that. Yeah. We got him a padlock.
Spencer: A punch code door doorknob. Yeah.
Mary: Most people put that on the outside of their house. But we put it on Spencer's bedroom door to prevent Lucas from going in. That actually solved a lot of issues.
Spencer: I remember someone. It was you or maybe it was a baby sitter? Someone had said like the day after, because there was an inciting incident why we got the padlock. I think it wasn't the fish tank, but it was an identical. I get back, all the wallpapers peeled off and everything's a mess. And I was just so upset. And we're like, okay we'll put the padlock on. So we put the padlock on my room door. And a babysitter, it's like a day or two later. Came upstairs and Lucas was standing outside the room, punching in codes, codes, doing the doorknob, knocking. Spencer, let me in and let me in.
Spencer: But eventually that subsided. Now, I don't have a padlock but he doesn't try to go in.
Mary: And he doesn't destroy things anymore.
Spencer: Yeah, he's much more respectful. He destroys cookies. He destroyed my cookies from the farmers market the other day. But hey, it was fine. I'm all good with it.
Mary: So we did get a padlock. We also had years, ten years while the kids were young. Where we got au pairs to help us supervise Lucas mostly. And also help us with Spencer. And I remember you were really not happy when I told you we were getting our first au pair. You actually fairly upset at the thought of bringing a stranger into our house? Do you remember that?
Spencer: Yeah, well, I remember being upset. I remember any kind of incident or meltdown, whatever specific insight that you're alluding to. But I can remember the general feeling of being upset about that.
Mary: But in the end, it really did help us. You know, Lucas needed so much supervision at that point. And also Spencer was young. He was like seven when we had our first au pair. And so you needed rides to places. And, you know, between Lucas's needs, you know, Lucas wasn't the kind of kid where I could call up a friend and say, hey, I have an appointment. Could I drop Lucas off?
Mary: Spencer was fine. But, you know, nobody was willing to, quote, unquote, keep an eye on Lucas because it was a tough job. But now he is much calmer, doesn't destroy things, is much more laid back and it's pretty easy to care for. Thank goodness. Were you ever stressed out worrying about us, your parents, in terms of our stress and grief?
Spencer: No, that might be kind of selfish answer. I never really considered how you guys were feeling until this very moment. Well, it's their job. I can say I felt, you know, anxieties about the future and what's going to happen in terms.
Mary: Oh, I guess that's the next point. So why don't we just go into that to the next stressor as listed by the Autism Society of America, is concern over your role in future care?
Spencer: Oh, that's something. I didn't even see that bullet because it fades into the next page. Okay. I independently brought that up for all the listeners.
Mary: Spencer did not want to go over any of the questions or what I was going to ask him. So this is all just off the cuff, but OK. So concern over your role of future caregiving. Now, we have discussed that now, you know, but when do you remember being first concerned about that? Like, do you remember how old you are?
Spencer: I don't have the specific dates. That would be better if I had a specific sort of but no. Just sort of a general sort of lingering sense of like what's going to happen here that probably, you know, increases in magnitude with time this time as I get older, as time goes on and I learn, as you get older. We start to see people fall and get dementia, those sorts of things. And as I get older and I start to learn about taxes and home ownership, guardianship.
Spencer: Yeah. That's that sort of stuff. You know, everything gets a little bit real or that gets a little bit heavier and more.
Mary: So, you know, it is I think that is a big concern of, you know, your father and I never wanted you to feel like you couldn't go away to college or you couldn't, you know, plan to live somewhere else. But I know some families, you know, from the get go they're kind of counting on their sibling to take the reins. And so I was just every year we got guardianship. My husband I got guardianship over Lucas when he was 18. Because he literally cannot cross the street by himself or be out in the community alone. And, you know, sometimes it's a close call whether guardianship is appropriate.
Mary: But in Lucas's case, he absolutely needs somebody. He is not conversational. There's nobody in the world that would say he doesn't need a guardian because it would be impossible for him to survive, you know, without someone with him or caring for him. So every year we have to renew the guardianship paperwork online now. Over the years, it's changed from being all on paper, you know, scanning things and mailing things in to online.
Mary: And I was just saying to Spencer, you know, he is in our will, as is my sister as kind of co guardians of him should anything happen to my husband and I. But, you know, there are paid guardians and people that can be paid. He has a lot of care. We're fortunate that, you know, I advocated for a waiver and for care. After we were done with our au pairs. You know, he just needs a lot of care. So we're fortunate to have a lot of services in place to monitor him for many hours in the day. But, you know, it's I don't think it's fair to the sibling to just expect you to think that Lucas is going to live with you forever, that you're going to have to provide the actual care to him.
Spencer: And also to plan that out. I mean, 20 or 30 years from when that would be happening, like, that's not realistic. It's not just logistically feasible.
Mary: So do you have that weighing on your mind at all?
Spencer: I would say it you know, it pops in. It comes and goes, especially with, you know, as I'm starting my career and I'm starting, you know, looking at a big thing with medical schools at the end. You go to residency and you go through a match process. So you don't particularly get to pick where in the country you get to go. Sometimes they'll just, you know, you wreck hospitals, they rank you and you end up where you end up. And so sort of, you know, is that going to be a problem?
Spencer: And then when you get into the career market or just jobs everywhere it's more selective and feasible. So, yeah, I'd say that that's on my mind, but it's not consuming me. And there's still a lot of time out and a lot of it. You just got to wait and see how things go and go from there.
Mary: Yeah. It is a process. And like I said, we can only kind of plan as far out as we can. You just have to hope that, you know, there are good people in our lives and in the future. Lucas will continue to get the care he needs to be happy and independent. So we kind of covered the main bullets of the stressors for siblings. So if there are families listening, well, say, you know, a child or teen with a sibling. Are there any overall pieces of advice you would give to that sibling?
Spencer: I would say I mean, I think that Ifeel like there is a lot of pressure growing up sort of to conform, conform, conform, fit in that sort of thing. As I'm getting older and I'm going through different application cycles, like college application, medical school application, that sort of thing. It's all about standing out.
Spencer: So that path runs anti-lateral to how a lot of children are being socialized. And so something that I would say is like if you are a sibling of a child with autism, own it. Say that. Talk about that. It's a great talking point. It's something that has had, whether you choose to accept it or not. I would I would bet I guess I should only speak for my own scenario. But, you know, it has a massive influence on your identity and on the person that you turn out to be. And so I would own that. I would talk about that. I would bring that up to people.
Spencer: And it's a lot of times it can just seem like, oh, this is just how things are like that stuff. But no, I think that that's something that makes you really special and can have a very positive impact on your personality development as you get older.
Mary: Yeah. And I think that's great because you with your college essay.
Spencer: My college essay was on my relationship with my brother. And I thought, you know, is this being cheesy? Is this being extortive? But at the end of the day, I came to realize, no, this is something that, you know, it's had such a profound impact on me and my maturation that this is a valid thing to talk about, because I also made his way to my medical school interview. I forgot he was in there and then going around the table. And one of the things I think I can say this, one of the interviewers said I was really touched about what you wrote about your brother. Can you tell me more about it? On medical school interview.
Spencer: And I was like, absolutely, let's go. Right. And just great talking points that I think really revealed a lot, not only about Lucas, but in doing so it revealed a lot about myself and the relationship that we share and my upbringing. So I would I would own it. I would talk about it. I would let people know.
Mary: And I do think that I do know many families with siblings and I do think siblings of kids with autism and kids with disabilities are among the most resilient, mature. If somebody did make fun of Lucas, even when he was little and especially now, you would be like me, would not just let it roll off. You would educate them and you would advocate for Lucas so that he is as safe and happy as he can be at all times. So you, in the end, through all of this years, are growing up with a sibling, have managed to really grow from the experience. And every family has their own stressors in their own unique circumstances. Our family has autism and we you know. But no matter. I think your point. Don't just conform and try to do things like everybody else.
Mary: Even if you don't have a sibling with autism, you have a unique set of circumstances. Yes. You know, look into it. Be proud of it. One of the Autism Speaks points is that you should be proud of your brother or sister and be proud of your family and your relationship with him. And the fact that you have learned things. And I'm sure when you are a physician, after many more years, you will be very compassionate. You already are compassionate. And I think the whole autism world has definitely led you in the right to.
Mary: Yeah, well, we are about to wrap up, so I always end the podcast the same way. So we have both parents and professionals listening. And part of my podcast goals are for parents of professionals to be less stressed and lead happier lives. So what are your stress management tips or self-care tips that you'd like to give out? Anything?
Spencer: Oh, I don't get stressed. Like is just surfing on a rainbow for me. I can't. My mother is laughing right now because she sees the end of it when I'm like, oh my God, I have five papers due and three exams. I'm all hyped up. So what would my tips be for parents and professionals that could translate? Yeah, totally.
Spencer: This might be a bit of a bit of a basic tip, but one that I think is essential. David Allen's Getting Things Done, which I took from your bookshelf without asking.
Mary: It's a book called Getting Things.
Spencer: You know, he talks about and this book's really, really old. I think there's a newer edition. But the one I had talks about, you know, filing cabinets, palm like pocket organizers, that kind of thing. The principle of how the human mind is really, really great for doing and for processing and solving problems, but it is terrible at storing them. So to sort of get all your whole list and like everything that you have to do off of your mind and someplace else, whether that's a little jar at all or a I mean, I think you should use an app.
Spencer: I use things three, which I like, just sort of like a to do list app. And it kind of that just, you know, get what you have to do out of your mind. And some place store it someplace else. Use your mind for doing. Then you can actually enjoy more when you're not doing things because you're not worrying about all the things you have to do. Like it's in a trusted system. It's someplace else. And you can review it when you need to. And I think that's been the single best thing for me personally in reducing stress.
Mary: Great. I know another tip in that book is if something is gonna take you two minutes. Don't put it on your to-do list. Just do it. Two minutes or less. So one of the things, as you were saying that last tip, which I think is great, is I did a video blog a year or two ago that said basically I want the same three things for both of my kids and all of my clients and all of your kids out there. I want every child and adult to be as safe as possible, as independent as possible, and as happy as possible.
Mary: So I think Spencer's a great example how, you know, we have achieved those three things. It's not a finish line. We're not done. We're always going to worry and going to plan for safety, independence and happiness and get you to the next level. But I think I'm so proud of you for getting there, being a, you know, as organized as possible and living away a thousand miles away from me for the past four years and planning on living another thousand miles away from me. But thanks to COVID, I got three months back with you living here. So thank you so much for sharing your tips for siblings and for having this discussion.
Spencer: Of course. Thanks for having me on. I know I'm a bit of a change from the usual policymakers, psychiatry, as you know, your usual guests. But I hope for my candor. Some listeners can extract some type of useful information and something that might be applicable for them.
Mary: I'm sure they will. And hopefully we'll have other episodes with more siblings because I do think that siblings are among the greatest, greatest source of strength and resilience. So thanks again. I'm sure many listeners wish you well for the next the next four years, but maybe we'll have you back again before the end.
Spencer: I'd love to. We'll talk about it.
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