How to Be a Sister: A Love Story with a Twist of Autism

by Eileen Garvin

The first book by acclaimed author Eileen Garvin—her deeply felt, impeccably written memoir, How to Be a Sister will speak to siblings, parents, friends, and teachers of people with autism—and to anyone who sometimes struggles to connect with someone difficult or different.  Eileen Garvin’s older sister, Margaret, was diagnosed with severe autism at age three. Growing up alongside Margaret wasn’t Eileen often found herself in situations that were simultaneously awkward, hilarious, and heartbreaking. For example, losing a blue plastic hairbrush could leave Margaret inconsolable for hours, and a quiet Sunday Mass might provoke an outburst of laughter, swearing, or dancing.How to Be a Sister begins when Eileen, after several years in New Mexico, has just moved back to the Pacific Northwest, where she grew up. Being 1,600 miles away had allowed Eileen to avoid the question that has dogged her since What is she going to do about Margaret? Now, Eileen must grapple with this question once again as she tentatively tries to reconnect with Margaret. How can she have a relationship with someone who can’t drive, send email, or telephone? What role will Eileen play in Margaret’s life as their parents age, and after they die? Will she remain in Margaret’s life, or walk away? A deeply felt, impeccably written memoir, How to Be a Sister will speak to siblings, parents, friends, and teachers of people with autism—and to anyone who sometimes struggles to connect with someone difficult or different.

Genres: Nonfiction, Memoir, Autistic Spectrum Disorder, Psychology, Mental Health, Inspirational, Biography

274 pages, Kindle Edition

First published January 1, 2010

Reviews

[Alison · Rating 1 out of 5]

It takes a lot for me to rate a book one star but this was just terrible. The title is totally misleading, there is no love story here. As a parent of two children with ASD, married to someone with ASD traits, with multiple other family members with ASD, I would be ashamed if my NT son ever wrote a book as an adult comparing his sibling to a dog and devaluing and dehumanizing them. Just no. Autistic people are actually fully people and they are NOT lesser forms than NT people. Good grief.

[William Cunion · Rating 5 out of 5]

Thoughtful memoir of a woman whose sister, Margaret, is afflicted with fairly severe autism. Garvin recounts a number of embarrassing, even humiliating, events from their childhood (and adulthood) that all sound very familiar – the frustration, the repetitive challenges, the feeling of pointlessness – that autism brings. Her difficulties in understanding her sister lead her to a place where she may be able to better understand herself, too. But what’s remarkable about the book is that it isn’t entirely about her, but it’s about her sister – that’s no small task given how little she has to work with (in terms of interests, thoughts, etc.). She portrays Margaret as she is, and that includes portraying her as her own person, trying her best to make it through this life. [Possible spoiler alert?] What I also like about the book is that it doesn’t have a Disney ending – Margaret doesn’t come to live with her, or somehow “snap out of it,” or anything else that would have made me roll my eyes. Instead, the author simply seems to arrive at a place where she accepts that this is her sister, and that there is no point in wishing things could be different – and that they can have a relationship, of sorts, regardless of her sister’s disability. It’s a very honest book, too. Near the end, she says that she has determined that there is no “deeper meaning” behind the autism, but I’m not sure that I agree – she has a beautiful line on 236: “Because you are different, I am different, too.” I’m not exactly sure what she meant by that, but I take it as the deeper meaning that she denies.

[Shireen · Rating 3 out of 5]

It's true what the author says: there aren't a whole heck of a lot of books, or even magazine or newspaper writings, about being a sibling to a person with autism or any disability. Most are by or about the person with autism or written from the parental point of view. For me, seeing what it's like to live as the younger sister to someone with autism was interesting.

The way the author told this fairly straightforward story was different too. She would use the present to springboard back into the past then show how it affected her present desire and ability to have a relationship with her sister. Each chapter focussed on a different aspect of living with a sibling with autism and on how her sister's autism affected herself and her family in that aspect. I liked the structure; I liked the idea of going back into the past then re-emerge into the present. But sometimes I got lost. The demarcation between past and present was not always clear to me. Perhaps a print book would've been a better format, as it's easier to flip physical pages than virtual ones. It would've been easier to go back and reread the paragraphs that would clear up any confusion then flip back to where I'd left off. Other than that, it was a pleasant wander through the experiences of a sibling with a disabled sister.

[McKenzie Richardson · Rating 5 out of 5]

An absolutely stunning work. I love that Garvin is so honest about her experiences and how she felt about them. She gives a true account of how she felt growing up with a sister living with severe autism and does not try to hide her negative thoughts and actions toward her sister during various stages of her life. While some of the stories become repetitive throughout the book and some of the present-to-past memories become a little confusing, this was a terrific book. It gives a great first-person narrative of how one woman struggled to figure out what it means to have a sister living with autism. Her story was eye-opening and the ending was perfect and beautiful.

[Leigh Hancock · Rating 4 out of 5]

I was interrupted from writing this comment by a herd of meth-crazed javelinas (i.e., two hungry eight-year old boys). I have sent them off to Camp Cowabunga (really) and will try to finish now while I can.

First of all, a disclaimer. My friend Eileen wrote this book, so I can't help but be biased. Still, even if I didn't know and like and respect Eileen, I would really like this book. First of all, it's funny, which is good because autism isn't exactly choice or politically crrect comic material. Secondly, Garvin (see: I'm trying to be objective) keenly captures the voice of her sister Margaret, in all its quirky emphases and repetitive phrases (it reminds me of Leonardo de Caprio is that movie "What's Eating Gilbert Grape?"--which is a good thign).

And third: this memoir isn't just a recitation of all things that happen when your sister is autistic--although some of them, like the weddings, are reason enough to keep reading. There's a question here, identified early on and explored from various angles . What kind of adult relationship can one have with an autistic sibling, who hugs you one minute and slams the door in your face the next, all the while yeslling "Good-bye! Thanks for coming!" There are no pat answers, but Garvin does a good job of staying with the question, and maybe even coming to some peace at the end.

[Jessica · Rating 4 out of 5]

Being as I am from Spokane, and this book is set in Spokane, I may be a little skewed. Especially to the outsider who doesn't understand some of the novelty in the book, based on Spokane. Another reader mentioned not liking it as much because it felt like a bunch of inside jokes among the family, and it's true.

Though the plot may seem redundant to many, I don't find it to be. Spending significant amount of time around people with special needs, especially autism, you find everything to be a little redundant, because routine is critical. This redundancy present in the book makes you better understand that life. It allows the reader to better see that the life of a sibling of someone with special needs exists. So many people focus on the person with special needs or the parents and how life must be for them, but not often is there stories or support for the siblings. They are just expected to deal with it. This book fills a gap that Garvin even addresses. Besides, this book is, I feel, not so much for those without knowledge of people with autism and more a support for those who do.

[Rena Jane · Rating 3 out of 5]

I'm glad I read this book, because it shows autism's impact on a family member. However, it seemed the author was repetitious and turned into a series of quite similar complaints.

Having a grandson with high-functioning autism, I can relate to some of the family frustration and the lack of communication about shared trials, coping becomes a matter-of-fact, not an issue to discuss, since it often must be accepted, rather than analyzed and altered. And Garvin is discussing a situation that was back in the 50's and 60's, before it was so easy to find support groups, or get emotional counseling.

I'm glad I read this, but wouldn't necessarily recommend it to others. My daughter tried to read it and gave up since it seemed whiney to her.

[Kathy · Rating 3 out of 5]

I really wanted to like this book more because it is such a moving and honest story. Eileen grew up thinking that she needed to be the caregiver for her autistic sister, in spite of having two parent and three other siblings. That sense of responsibility has caused her no end of guilt for falling short, although Margaret, the sister, seems to have done well in adulthood thanks to the services that are now available for people like her. I would have liked the book more if it hadn't been so repetitive; I wish the author had stuck to the story more without including so many repeats of how she was feeling: the narrative can do that on its own. Still, a compelling read and an important description of life with a severely disabled sibling, which is a story that isn't often told.

[Maureen · Rating 2 out of 5]

I am reading this book, and considering just putting it down. The author doesn't talk about how the family dealt with the girl's Autism, except through stories of how her sister acted in different scenerios. Boring at the least. I will finish, hoping that the author will talk more about Autism and less about the private jokes the family shares.

Even after finishing this book I still wasn't satisfied. I would have loved it if Eileen had gone a bit deeper about her sister.

[Peggy · Rating 3 out of 5]

good, not great. not as in depth as I had hoped. a little too easy of a read.

[Barbara · Rating 4 out of 5]

I wanted a happier ending, but so did she. I wanted to know more about what the other siblings were doing

[Maria Rubin · Rating 5 out of 5]

I found this book to be very refreshing, told from the point of view of someone living with a sibling with a disability. She doesn't tell you what you should or shouldn't do if you are in this situation, but what she herself has done to be able to cope and function as the loving sibling. There is not a lot of advice given, but that's ok, because every situation is different, and everyone has to find their own way through it. Having had a sibling with a mental health disability, I could relate (and sometimes laugh hysterically) at some of the experiences she told about in the book. Memories are funny things in that they can do so much damage when you are experiencing them in real time but as a memory can be viewed as a learning experience that you somehow survived and that helped shape you into who you are.
I would recommend this book to anyone who has lived with the "different" sibling, experienced society's reaction to that sibling, and realized that loving them has enriched your life and impacted it to make you the person you are today.

[Kate Belt · Rating 4 out of 5]

Garvin writes well. I’ve enjoyed both of her novels and look forward to whatever she writes next. I read this book because I wanted to find out more about the author – who she is, what she is like. This book is totally about her relationship with her older sister who has autism. She is honest, sometimes painfully, about how the different way Mag’s brain is wired affected the family growing up and every part of their lives. They nearly always took her everywhere - weddings, parties, church, vacations. She also writes honestly about the challenges of trying to have a relationship with her sister as an adult, coming to understand that all she can do is accept her sister as she is at any given time. Mags has gained some control over her behavior as she has grown up. The family has done everything they can to work with her, but they can never predict how she will behave or react at any given time.

[Blair · Rating 3 out of 5]

Wasn’t what I thought this book was going to be. It’s very much complaining about her sister and her being on the spectrum. I get this was from a siblings perspective and not a parents, so it’s a different kind of love. This book made me realize how much we have changed in a positive light towards supporting the neurodivergent community. Such as noise-deafening headphones,service dogs to help with elopement, schools centered for neurodivergence, etc. She wrote story after story of her sister screaming, repeating of words of questions, eloping, not doing well in churches and restaurants, etc. I really wish there were more positive stories about the day to day life, her therapies, and small victories. Having a son on the spectrum makes me more empathetic to everyone and to celebrate everyday even with the small progress.

[Abby H-C · Rating 3 out of 5]

Stumbled upon this book as I’ve been coming to terms over the past few years with having a sibling on the spectrum. While my sister presents with ASD in ways different from Margaret, I still felt many of the same things as Eileen growing up. ASD in the family can make for a complicated and unique definition of love. Reading this book reminded me that I am not alone in the struggles I have had to grow up with as well as the ones that will continue to persist as my siblings and I make our own way into adulthood. While the plot was more a collection of short stories rather than an end to end story, I still commend Eileen for putting words to the experience for siblings of someone on the spectrum.

[May · Rating 4 out of 5]

Having written a memoir about my life with my own disabled sister who had Down Syndrome, I was hoping for more concrete information. I found that in the final chapter, but I struggled to get through the previous chapters, some of which seemed repetitious. I understand the book was about Eileen and Margaret, but I wanted to know more about their parents, their relationships with each other and their other children, and the relationships between the siblings outside of dealing with Margaret. On the whole the book is well worth reading; I was just left hungry for more.

My memoir Sister, Sister can be found at https://dreamsmith.com/must-read-memo...

[Tosca Bruno-van Vijfeijken · Rating 3 out of 5]

I am the mother of an adult child with ASD, though somebody who is impacted differently. I found this book repetitive in theme and tone. It should have been edited far more for length. I did offer some heartfelt impressions and experiences that stayed with me and it was honest in coming forth with how having a sibling on the spectrum impacted her (and her family system), but on the whole, I did not think it was a well-written book.

[Janice Branning · Rating 5 out of 5]

This was a great book to read about adult autism, it shows the struggle a family had with a daughter growing up with autism. I love the way it showed the adult part of what a family dealt with an adult child on the spectrum.
I know this would be a hard Bookclub selection, but I think it would be a good read. Because we don’t get the opportunities to read books with a different outlook on autism. You don’t see many books on adult autism, and how it affects the family.

[Mulchmaid · Rating 4 out of 5]

I have never lived with autism. Eileen Garvey has, and this memoire draws a real, funny, introspective, heartbreaking and loving story about her relationship with her older sister who has severe autism. She deals with the effect her sister’s autism has on her whole family and her steps in building an adult bond with her unique sibling. So well worth reading, as Garvey is a critical thinker, and an engaging, thoughtful writer.

[Brenda Dejong · Rating 4 out of 5]

I found this book to be honest and courageous. I am one of 4 kids, and our eldest sibling has multiply disabilities. Even though my (only) sister does not have autism, I could relate to the author’s frustrations and bewilderment in striving to “be normal” in the world. Creating a meaningful, respectful relationship with my sister is something I have struggled with my entire life, and Eileen Garvin’s sharing of her struggles and insights is tremendously encouraging. Thank you for this book.

[Carolyn Pasquarella · Rating 2 out of 5]

I made it about 45 pages in but didn’t feel motivated to finish. The story started to feel repetitive, and I was hoping for more insight into the parents’ perspective, which didn’t really come through.

As a mom of two autistic kids, I found much of the content familiar and, at times, a bit superfluous for my experience. That said, I think this book might resonate more with readers who are less familiar with autism.

It just wasn’t the right fit for me,

[Sarah · Rating 4 out of 5]

I found this book to be the authors work trying to reconcile her life and accept her sister in the world filled with societal expectations. The author seems to struggle with accepting her sister and herself and her relationship with her sister. I appreciate how difficult this must have been to write.

[Lee Weinstein · Rating 5 out of 5]

This book is such a gift to the world. Beautifully written and nuanced, honest and filled with the beauty and stings of having a family member who is different. Like the documentary “Crip Camp,” this book opened my eyes to a world I did not understand. An unforgettable read.

[Mel · Rating 3 out of 5]

Repetitive and a little flat. But most of all, exhausting.

[Pamela Glendinning · Rating 5 out of 5]

Such a touching book on a sisters love, expectations and acceptance.

[Laura · Rating 3 out of 5]

honestly lost the book and didnt want to buy anthor copy, did enjoy the first coupld of chapters

[Haven Jones · Rating 5 out of 5]

I needed to read this book more than I could have guessed. Although our sibling experiences aren’t identical, I’m so grateful for this author putting many of my feelings into words.

[Abd01451 · Rating 5 out of 5]

Repetitive in places, but very moving. Written by author of The Music of Bees.

[Mollie Ressa · Rating 4 out of 5]

Courageous and insightful story of author's complicated relationship with her autistic sister, Margaret.

[Brooke Lektorich · Rating 2 out of 5]

Honestly not a fan. Overall I felt the book was so negative, then the last 10 pages showed the author’s love to her sister. Maybe that’s the point, but not for me.