Conducted by Franca Pastro, BA, ASAT Board Member
Franca: How many brothers/sisters do you have?
Leigh: I have an older sister, Ruth, who is three years my senior and a brother, Sam, who is 11 years my junior – we are all very close. My parents also provided treatment foster care, starting when I was 16, so we also had one or two other kids at any one time living with us. Some of them were with us fairly long-term (5-10 years). All of them had significant mental health needs, and the one who was with us the longest also had autism. She lived with my parents for 11 years until transitioning into adult services and a group home. My parents are still her guardians, and we see her frequently.
Franca: Do you remember when your brother was diagnosed and how you felt about it?
Leigh: I don’t remember the actual event of him being diagnosed with autism, but I certainly remember everything leading up to it. Sam had significant medical needs right from birth, so those are my most vivid and scary memories. I was so thankful for every day that he was home and alive, instead of in the hospital that the rest didn’t seem like such a big deal. I remember that it was evident very early on that he was not developing typically. Sam wasn’t diagnosed with autism until he was three, but he started with a teacher for the blind, occupational therapy, and physical therapy, all by the time he was six months old. The blind diagnosis is an interesting one because as we later found, he is not actually blind. Because he wasn’t making eye contact and wasn’t tracking objects at all, he had some neurological testing done. The visual stimuli presented to him in these tests were not activating the areas of his brain that would be expected, so it appeared that he was blind. We still aren’t sure where that information is received in his brain instead, but I guess that’s his little secret. So that was all in the first year, and I remember it all pretty well. I was fascinated from the start with the therapists coming to our house.
It didn’t take long to notice that he was a little different in other ways too, and my parents did a lot of research and knew very quickly that it seemed like autism. At that time, though, doctors would not give the diagnosis of autism before age three. Many of his behaviors were very challenging, but the list goes on a million times longer when it comes to how and why we loved him. He was finally diagnosed when he was three, but I don’t remember that. I just remember the things that made him “Sam.”
Franca: You obviously love your brother very much. Apart from the fact that you are siblings, were there other factors that influenced your emotional connection with him?
Leigh: I give my parents most of the credit for fostering my feelings towards my brother. They were incredible pioneers. We lived in a far northern, remote part of Maine where, in 1991, the resources were few and far between, and there was not a lot of advocacy for autism yet. When my parents finally found out about applied behavior analysis (ABA) and insisted on starting a program, providers had to come all the way from New York and New Jersey. I admire my parents’ focus and persistence in finding him the right services.
What was significant for me is that this was a team effort and my parents really made me feel included in the process. It didn’t take my parents long to decide how they were going to move forward with Sam’s challenges. One of our main goals as a family was to continue doing all of the things we would have otherwise done, and if Sam’s behaviors interfered, we were going to meet that challenge head-on and work on it. We weren’t going to avoid activities or places for any reason. If people stared or made comments, we would politely try to educate them. As much as I loved him and as cute as he was, he did make it tough sometimes. However, we were determined to include him and help him enjoy these experiences. Of course, we couldn’t have done it without the wonderful professionals we had helping us. And I remember that it was hard work. We had some memorable failures as far as family activities go, but eventually, we got there. He learned to love all of those places that had been challenging for him and to tolerate the things that upset him. Now he goes anywhere and everywhere and has a blast.
Another goal my parents established early on was that we weren’t going to focus on what Sam couldn’t do; instead, we were going to be excited about the things he could do and was learning to do. That can’t be an easy attitude to adopt that early on, but I’m sure that was the single most important thing to influence my attitude, and I thank them for that.
Franca: Has your relationship with Sam changed over time from when he was little until now that he is an adult?
Leigh: We are a very close family, and I always felt what I thought was sort of a parental kind of love for him, maybe due to the age difference. Now that I am a parent, I can say that is exactly what it is. It’s that overpowering combination of awe, joy in watching every smile, and fierce protectiveness (maybe overprotectiveness). Now that he is an adult, the age gap doesn’t seem so extreme, but he will always be a baby to me. I just try not to treat him that way. When he was little, it was fine to be affectionate in public, but now that would probably look weird, so I try to allow him his dignity. At home, we cuddle all the time. He loves hugs more than anything.
Franca: How did you feel around your peers while your brother was present?
Leigh: As anyone from a rural place knows, it is a blessing and a curse that everyone knows everyone and EVERYONE knows Sam. So, growing up, when we were in our own community, he was just Sam. I’m sure I had to explain things here and there, but I don’t remember that so much with my friends. They just sort of got to know him over time. But obviously outside of that was harder. People stare. And that takes some getting used to. We all have pretty thick skin now.
Franca: Did you feel you received less attention as a result of your brother’s condition?
Leigh: Objectively speaking, there were times that I am sure I did receive less attention as a result of Sam’s needs, but I don’t see it as a negative. The way I remember it, anytime that was the case, it would have been for one of two reasons: one, he was in the hospital, and my parents were with him, but I was too worried about him to focus on the fact that I was getting less attention, or two, we were all fawning over his cuteness, myself included. Otherwise, my parents always made every effort to be at every important event or performance or whatever was important to my sister and me. If they really couldn’t, my grandparents would have been there. I was lucky that my grandparents were almost like a second set of parents.
One of the best things my parents did was involve us in everything they could so that even when the attention was on Sam, we were made to feel important in some way. I’m sure it helped that we were so much older and could assist in a lot of ways, but I think that was important. I don’t even know if they did that consciously or not. Or maybe they didn’t involve me, but I remember it that way because I was nosy and involved myself in everything.
Franca: Apart from your parents, did you have other sources of support? Did you go to sibling support workshops/groups, such as Sibshops?
Leigh: Growing up, there wasn’t any program of the sort available, and I probably would have resisted it anyway. I’m not much for getting out and meeting people or talking about my feelings. But I feel fortunate that we had such a strong family network. My grandparents, who lived nearby, were a huge part of our lives and a great support to my parents. As I mentioned earlier, it probably helped in a lot of ways that we were in such a small community. Thinking back, my greatest sources of support outside of my family were my best friends and their parents. I stayed with them a lot when Sam was in the hospital, which was usually several hours away.
Franca: Do you feel Sam’s therapeutic process has been disruptive to your family life?
Leigh: Because Sam started several therapies so early in his life, it became the norm pretty quickly. It probably was disruptive to our family life in ways that I didn’t recognize at the time. All I knew was that these cool people came to our house and played with him and I liked it.
When I was older and more interested in privacy and quiet time, it got a little harder. Because my parents were also doing foster care, there were often multiple staff members in our house on any given day, which could be a bit overwhelming. It’s very invasive to have people in your home all the time, no matter how much you like them. Even when you are fond of the people coming in, sometimes you just want a little privacy or time alone. Now the only thing that makes it hard is if we are visiting on a weekday; Sam is so busy, we hardly see him! He spends all of his time in the community with his staff and his friends, and I’m jealous! Sometimes I just want some time with him, and I just wish he didn’t have a better social life than I do! But I’m obviously so thrilled that he has a happy and comfortable place in the community.
Franca: You are a Board Certified Behavior Analyst (BCBA). Did the fact that you are the sibling of an individual with autism influence your career choice?
Leigh: I remember loving Sam’s therapies from day one. I thought these people had the coolest job to go to someone’s house and play with cute little Sam. Now I realize and appreciate how well they must have done their jobs to put up with me all the time and to make it look so easy. I was never discouraged from tagging along and observing and learning from his therapists. I was never told to leave them alone or be quiet. I was encouraged to learn and to appreciate what they were doing, and I think that was so important. When I was older, I regularly visited him at school and went to IEP meetings with my mom. I even worked with him during summer school one summer because in a town that small, that’s what happens.
I started my career by becoming a special education teacher. When I started working, though, I realized that was not necessarily going to fulfill exactly what I wanted to do. I wanted specifically to work with kids like Sam and to do ABA. Consequently, I had been informally trained in ABA by observing Sam’s behavior interventionists for so many years and also working at his school – this gave me a great start. I moved to New York City and worked in home-based ABA programs with early intervention and preschool age kids for several years. After that, I earned my Masters in Educational Psychology at New York University and completed my BCBA courses at the same time.
Now, as a BCBA, I have such a soft spot for siblings, especially when they show any interest in learning. Also, when I have done home-based work, I have tried to really respect families’ privacy and priorities. I understand what it is like to have someone in my home, so although my number one job is to work with the child, it is hugely important to me that families are comfortable too.
Franca: You are now the mother of two beautiful girls. Were you ever concerned about having a child with autism?
Leigh: Sam has been to geneticists his entire life and had a myriad of tests. Coincidentally, when I was pregnant with my first daughter was also when geneticists finally pinpointed a particular genetic disorder that appeared to be related to Sam’s autism. There aren’t very many cases that have been identified, and there isn’t much information about this genetic disorder. However, the other identified cases share many similarities with Sam, including his specific medical needs. Eventually, I was tested and found to be a carrier, which meant that I had about a 50% chance of having a child like Sam if the baby was a boy. As far as it’s known, girls can be carriers, but it only manifests as a disability in boys. By that point, we already knew that I was having a girl; however, this information did factor into our decision to have a second child. Ultimately, we took our chances and had another girl. I won’t lie, when we were waiting to find out the gender of the second baby and reality hit, it was more stressful than I had anticipated. As much as I love him, I kept thinking of all of our scary hospital experiences and my dear old parents who still don’t sleep through the night.
Franca: How often do you see Sam now? What do you do together?
Leigh: He only lives about 45 minutes away, so I see him often. Sometimes we see him weekly, but it’s usually at least every couple of weeks. He loves to play with my girls, and they really love Uncle Sam. I love to watch them play and interact. It is truly my dream come true and I couldn’t ask for more. He enjoys movies a lot and still loves to just sit next to someone and cuddle or hold hands, so movies are a good excuse for that. They have a lot of his old toys, and I think he probably recognizes at least some of them and gets excited to get down on the floor and play with the girls and the old toys. He also really loves to swim, so we spend a lot of time swimming in the summer. He has a pool, and we have a camp on a lake where we spend every weekend all summer.
Franca: What do you see as your role in Sam’s future?
Leigh: I don’t really know what the future holds for him, and it’s scary to think about. Because we live in such a rural place, there aren’t a lot of options for people with disabilities. He currently lives with my parents and has a very nice accessible bachelor pad in their house, so it’s hard to imagine that won’t be forever. I would literally do anything for him – I will move mountains to make it happen. I am terrified by the idea of him living outside of the family just because he is nonverbal and would never be able to tell anyone if anything inappropriate in any way was happening in his environment. Maybe I’m overprotective, but I think I would want him to live with me before he went anywhere else, though I also know that’s a big commitment. And of course, that decision should be made based on what will be best for him and make him happy and not just on my mother hen instincts.
Franca: Is there anything you would want to say to other siblings with a brother or a sister with autism?
Leigh: Even though my experience may be unique, it’s all I know, so it’s a little hard to pinpoint what I have learned. However, there is no question it has shaped a lot of my life and my attitude. Here are some thoughts:
1. Talk openly and ask questions. Acceptance comes with understanding, but understanding doesn’t happen without communication. I had a professor who told me once that, “Fair is not that everyone gets the same thing, but that everyone gets what he needs.” I believe that’s true and partly why I don’t resent that Sam probably received more attention than I did in a lot of ways. I am very thankful that my parents communicated with us along the way to help us understand, accept, and even learn to love things the way they were.
2. Feeling embarrassed is a choice. I learned that when I chose to stop feeling embarrassed and started disregarding the stares and looks of bewilderment or curiosity, I could have more fun… and in the process, I might do more to teach others acceptance.
3. It’s ok to feel every emotion in the world about your sibling because you would with any sibling!
4. I went into this field of ABA and have an incredible career because of Sam. My advice is not that siblings necessarily make the same choices that I did, but that they can look at the possibilities the experience can present instead of the limitations.
5. Your sibling is your sibling, special needs or not. It might not be what everyone else has, but it’s what you have. That’s no different than anything else in life – and you don’t necessarily want what other people have! You’re missing out on life if you don’t find a way to make the best of yours somehow.
Leigh Broughan, MA, BCBA is Co-Vice President of ASAT and lives with her husband and two beautiful daughters in Maine, USA.
Citation for this article:
Pastro, F. (2017). Perspectives: Interview with Leigh Broughan. Science in Autism Treatment, 14(3), 2-6.