Part 1: Introduction and Overview
Who am I, and why am I speaking about sibling relationships? Here, I’ll give a brief overview of my life with my brother, Willie, an amazing young man on the autism spectrum who has struggled with aggression and self-injurious behavior for the last decade.
I’ll share that I’ve been to the peaks and the valleys; I’ve been through the whole gamut of emotions that comes with being a sibling. I get it, and it doesn’t scare me anymore. In fact, I’ll tell a bit about how my relationship with my brother has led me here, to a tremendously rewarding career within the autism community.
The broader point: Having a sibling with ASD shaped me significantly, both as a child and as an adult.
Next, I’ll share a recent story of my relationship with my brother: a very simple time we spent looking at one of his beloved dog books together over the winter holidays. I’ll explore how this moment -- a quiet moment of reading together -- represents the best of our relationship.
Part 2: 5 Top Challenges
In my personal and professional experience, there are 5 tough challenges that siblings face. Each point will feature examples from my own life and experience, both the ‘bad’ and the ‘good’. (I’ve smashed guitars and run away from home because of Willie, but I’ve also become a caregiving professional and full-time writer in part thanks to him!)
Of course, experiences will vary widely, but most siblings can relate to these 5 general areas:
1. Feeling like they get the 'short end' of the stick at times when it comes to their parents' attention (Love doesn't keep score, but siblings sure might!)
2. Conversely, feeling like they are a sort of 'third parent' to their sibling, with a higher degree of responsibility than other individuals their age
3. Feeling like they don't belong, fit in, have peer acceptance, because of their sibling’s diagnosis
4. Feeling guilt or shame that they are not the individual with special needs – this can have carry over into many aspects of life.
5. Feeling torn between love for sibling and desire for them to change; having to navigate what acceptance, even as they’re asking: What role do I play in my sibling's care as they age?
In each area, I’ll share a relevant story from my own life:
1. The unfairness of sharing attention: I remember having a minor meltdown when my parents explained that only one of them could come to my high school choir concert. I so badly wanted both of them to be there, but it just wasn’t possible given my brother’s instability at the time. One parent would have to stay home with Willie, simple as that. I raged against the unfairness of it -- why couldn’t I have both parents present for this important moment in my life?
2. Being a ‘third parent’: When Willie began having significant behavioral challenges, I was a teenager, and thus was involved in some very ‘grown-up’ conversations, such as: the pros and cons of certain medication choices; whether or not Willie was able to remain at home with us; the possibilities (or in our case, lack of possibilities) of finding good respite care. I often volunteered to stay home with my brother so that my parents could have some time out, time to themselves. (However, on one occasion, this backfired - while they were away, Willie bit me on the leg during a sudden meltdown, and my parents were heartsick that I’d been hurt.)
3. Feeling like they ‘don’t belong’: I used to keep a ‘clothes calendar’ in middle school, a literal recording of what I wore to school each day. I wrote my outfits down because I dreaded repeating an outfit; somehow, I felt this would call undue attention to me. At the time, I was realizing how my brother’s differences were a part of what made me different, and I was desperate to fit in with the crowd.
4. Feeling guilt or shame: I’ve always tended to apologize a lot, especially when I'm nervous. As an adult, I learned that this was a coping mechanism I developed in part because of 'having to' graciously apologize for idiosyncratic behaviors from my brother. I also felt afraid to invite friends to our house, for fear that they’d see Willie have a meltdown; I felt like it would somehow be my fault if this happened.
5. Learning to navigate acceptance & play a role in sibling’s care: When I was younger, I resisted the idea of accepting my brother as he was -- because didn’t that mean condoning his harmful actions? And I couldn’t wrap my mind around the possibility of being a part of his full-time care -- that seemed way too daunting, a very weighty responsibility.
Part 3: What Can We Do To Help?
Now that we’ve established some of the difficulties that siblings face, we ask: How can they be helped with them? And in fact, many of our answers will uncover the ways in which siblings are uniquely gifted … the ways in which their brothers and sisters on the spectrum have shaped them.
Three things that helped me most:
1. Having open communication with parents about struggles and joys. We’ll talk a bit about how to foster this kind of communication, if it isn’t there already - I’ll draw on my experience as a sibling support group leader for this as well.
2. Having a friend (even just a single person) in one’s peer group who also has a special needs sibling, and can relate with empathy. We’ll talk about how to facilitate these kinds of relationships, and how beneficial they can be.
3. Being in relationship with individuals with special needs who are NOT one's sibling. This is so helpful because it gives siblings the chance not to take certain behaviors 'personally' – and people so often take what their siblings and family members do very personally! I’ll talk about how this looked in my life -- serving in the L’Arche community -- and how parents might help their children get involved as volunteers or best buddies.
Also, taking time to point out the joys that come with each area of difficulty:
1. The unfairness of sharing attention: Put simply, I learned early on that life isn’t fair. This is a valuable lesson, one that many people don’t learn until much later. But I also learned an even more important truth: Love doesn’t keep score. Thanks to my brother, I learned that it was counterproductive to compare my relationship with our parents to his; they would, after all, always be different. What I could do was appreciate all the ways in which our parents showed me love and care (I’ll give examples here).
2. Being a ‘third parent’: While this did feel like a significant responsibility, as I grew older I realized two things. First, I didn’t have to ‘rescue’ my parents or brother when they were stressed; I could let go of that self-imposed burden. Instead of immediately leaping in to help during a crisis, I could watch and wait, assessing whether or not my help was truly needed. As I waited, I could breathe deeply and serve them all by maintaining my own sense of calm. Next, caring for my brother was an excellent preparation for my work as a professional caregiver - I was well-versed in anticipating people’s needs, sensitive to things like sensory overload, and able to respond to frustrated individuals with compassion. (After all, I’d had practice!) These same skills will serve me well should I become a parent in the future.
3. Feeling like they ‘don’t belong’: As I grew, I learned that special needs mean standing out - and that that is actually a powerful gift. I learned that there is no ‘normal’, and that every family faces challenges. Thanks in part to my brother, I was able to pursue an unconventional life path that has brought me great joy.
4. Feeling guilt or shame: I’ll tell the story of inviting my best friends to my house for a sleepover. I invited them with trepidation, and my fears were realized: Willie did have a major meltdown while they were there. Yet their response of love and acceptance was very healing for me. That difficulty drew us together, and we are still close friends.
I’ll also talk about the feelings of guilt that ‘neurotypical’ siblings experience just for being ‘neurotypical’, and share a story of how my yoga practice helped me see the beauty and value of me being exactly who I am, and my brother being exactly who he is.
5. Learning to navigate acceptance & play a role in sibling’s care: The journey to accept my brother, meltdowns and all, has been a powerful theme in my written work. Over and over again, people approach me and thank me for sharing my family’s story. And accepting Willie as he is has opened the door to my own self-acceptance, which is an invaluable gift.
In addition, I’ve made life choices conducive to the possibility of supporting my brother some day. (For example, I work from home, run my own business, and own a home that features 3 distinct apartments within its walls - an ideal setup for someone whose adult brother is fairly independent but needs regular check-ins and support.) These choices have been life-giving for me, and while I know that it would be a big challenge to welcome Willie into our home, it would also be a privilege.
Part 4: Audience Involvement
Open Up the floor, welcoming additional ideas from participants on what helps, and/or stories of additional challenges. Time for question and answer before conclusion.
Part 5: Conclusion
Here, I’ll tell the story of a young teen named Hannah, who I met at a support group I led for siblings of people with special needs. She was about 11 years old, but so mature, elegant, smart – and obviously so loving to her baby brother, who had a genetic disorder. I’ll read her words, and talk a bit about how siblings are living proof of the gifts that can come from being in relationship with individuals with autism; how the experience can transform you for the better if you let it.
At the end, I’ll welcome additional questions and be available to connect with participants and provide resources as needed.
Bio: Caroline McGraw is a would-be childhood paleontologist turned storyteller, digging for treasure in people with autism and empowering caregivers to do the same. A former L’Arche Program Director, she blogs at AWishComeClear.com, serves as a columnist for AutismAfter16.com, and writes web copy for organizations with an autism focus.
Caroline G. McGraw
A Wish Come Clear
Caroline McGraw is a childhood storyteller, digging for treasure in people with autism and empowering caregivers to do the same. A former L’Arche Program Director, she blogs at AWishComeClear.com, serves as a columnist for AutismAfter16.com, and writes web copy for organizations with an autism focus.
