Showing posts with label siblings. Show all posts
Showing posts with label siblings. Show all posts

Things I Already Know: A Review of ‘Things I Should Have Known’ by Claire LaZebenik

Kate Ryan

[image: Cover of the book "Things I Should Have
Known" by Claire LaZebnik: A dark blue background
with "Things I should Have Known and the author's
name in all-caps, handwritten text. Parts of the title
are scribbled out in pink, so the title reads,
"Things I Know."]
When I scanned the inside cover of Claire LaZebenik’s novel Things I Should Have Known, I knew that I was going to read this book. Not because it sounded particularly interesting, but because one of the main characters was autistic, and that always intrigues me because I am autistic myself.

I opened the book on a sunny Saturday afternoon—with trepidation, because 99% of the time, autism (and other disabilities) in fiction are portrayed terribly and then I want to retch at the end. Young adult books, which is this book's category, are particularly liable to being not just ignorant about disability, but genuinely bad.

That being said, I was pleasantly surprised by this book, because it wasn’t terrible. It was bland and predictable, and the writing was not especially good, but the author clearly knows autism—and autism was not the villain in the story.

Things I Should Have Known centers around Chloe and Ivy, sisters aged 17 and 20. They live in Los Angeles, California, where Chloe leads the perfect life: she is blonde, skinny despite eating terribly and never exercising, has a rich, handsome boyfriend, and is smart enough to be in honors classes. That’s it, though: we are never told her hobbies, interests, dreams, or anything to really flesh out the character as a living person. Chloe’s life revolves around being perfect and taking care of her sister, and that’s it.

Ivy is 20, plain in appearance, likes watching television and playing on her iPad, and goes to a special needs school.  Ivy is verbal but struggles with many things that autistic people struggle with, such as social communication and changes in routine. LaZebnik definitely seems to ‘get’ how incredibly hard autistic people try all day long to be "normal," and how incredibly exhausting and anxiety-provoking it is.

Chloe shows real empathy towards her sister and gets it in return. Ivy clearly adores Chloe and depends on her, while at the same time, she makes deliberate efforts to be the older sister that she knows she is, and to comfort and help Chloe in times of need. Ivy is constantly seeking Chloe’s approval and changing herself to please her sister, such as getting her hair cut and highlighted at Chloe’s suggestion, even though haircuts hurt for her. If you think autistic people are not capable of empathy, then you have not met Ivy.

Unfortunately, it seems like LaZebnik was so busy making sure that Ivy was a fully-fledged person, she forgot that Chloe should be one, too, especially since it is told from Chloe’s point of view.  She equally fails with the character of David, who is the younger brother of Ethan. It turns out Ethan and Ivy have been in the same class for years, as have Chloe and David, but they never realize this until Chloe decides that Ivy needs a boyfriend and starts planning social outings. David, being a dutiful younger sibling even more than Chloe is, comes along, and he and Chloe are soon on the path to a weird romance that we are never given any reason should exist, because both of the characters are flat as paper.

One thing that this book does well is that it portrays autistic people as fully-fledged human beings with ideas and interests of their own, who are constantly being forced into boxes by well-meaning non-autistic people. Even though Ivy is not interested in Ethan, she wants to please her sister so much that she goes along with her plans. One thing that this book does not do well, however, is in its portrayal of autistic people as sweet, good, innocent and incapable of anger. Ivy gets confused and tearful when Chloe is shouting and ranting. And Ethan is almost a stooge, a caricature of your typical autistic male. He wants to be Ivy’s boyfriend and sets out to do so by following the rules set out for him by David, such as paying for snacks, participating in activities, and he shows his own devotion to being a ‘real’ boyfriend by doing research on topics that Ivy has interest in.

~Here there be spoilers~

Unfortunately, Ethan ends up getting dumped by Ivy because it turns out that Ivy, like many people on the spectrum, is gay; plus she never really thought that she and Ethan were dating in the first place; she was just going along with what her sister wanted. But being dumped so upsets Ethan that he does a runner and bolts, and his parents then decide to send him away to a boarding school.

Although Chloe and David, who are by this time full-fledged boyfriend and girlfriend despite not having any chemistry whatsoever, are devastated, Ivy does not seem to have any particular feelings about this turn of events. David is convinced that wherever Ethan has been sent to, it is a torturous pit of snakes, and is very surprised when he and Ivy visit and find nothing of the sort. Instead it seems like a college campus where young autistic adults are supported and go to classes and are encouraged in their own pursuits.

This is one of the things that rings most untrue to me: David’s parents, instead of hiring more support staff or sending Ethan to a weekly boarding school, were able to—in a matter of days—get him admitted to this fantastic institution (for it is an institution, locked gates and all) where he never comes home from and where his only visitors are Chloe, David and Ivy.

David accepts that it is possible his brother is happy without him, in a place where he gets lots of support and has opportunities that he lacked at home, but to me, this section seemed like it was in support of sending autistic people away from their families when they got to be "too challenging" in their behaviors. This was really sad. We should be moving away from institutions, not towards them. (Also, where does David’s family get the money for this? They do not seem to be particularly well off, but they must be secretly rich or something. And if they were secretly rich, why were they depending on David for years to be his brother’s only companion instead of hiring a personal care aide?)

I felt weird about this book. Judging by the reviews it got online, people are raving about it. But it is clear to me that that book was written for siblings of those on the spectrum or for those people who don’t know anything about autism; it wasn’t written for autistic people or autistic teenagers, who I think could seriously use a book where they found themselves portrayed accurately. For now, we will have to rely on memoirs, not fiction, for that.

I definitely liked parts of it, such as when David and Chloe explain exactly why vaccines do not cause autism, or when Chloe muses about how hard Ivy works all the time to appear ‘normal’ despite the fact that she is experiencing horrible, constant anxiety. But other parts just fell flat.

I think perhaps the author was too intent on educating people about autism, and how it isn’t a death sentence and not intent enough on writing a good book. There was a lot of dialogue, a lot of telling, not showing. LaZebnik was careful to dispel myths about autism but didn’t care that she’d made Chloe into a most stereotypical valley girl, blonde highlights and all. We know that Chloe cares about Ivy, David and Ethan, but whether or not she cares about anyone or anything else, we never find out.

Overall, I would recommend this book, especially to teen siblings of those on the spectrum, but I would read it alongside a teen on the spectrum and discuss it with them to make sure that they understand that Ivy and Ethan are no more your average autistic person than Temple Grandin is. There wasn’t any new information for me in the book, but I can definitely see how people who don’t know many autistic people (and you should, because we’re awesome!) would benefit from reading it.
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Encountering the Limits of My Professional Autism "Expertise"

Anonymous

Photo © Carissa Rogers | Flickr/Creative Commons
[image: Adult and two children, silhouetted against
a lake and colorful pink sunset.]
I started working with autistic children in the mid-nineties, as a volunteer in a magnet school. The experience was influential, and I went on to become a psychologist, getting a PhD focused on autism research. Since then I’ve been working in academia for almost a decade, and have published numerous papers reporting on novel autism studies. I’ve built a reputation in my sub-field within autism research and am, I’d like to think, fairly well-regarded professionally. All of this was established well before I had children.

Earlier this year, following about a 12-month process plus a longer period of discussion between myself and my partner, my daughter Penny was diagnosed with autism.

In many ways nothing has changed—Penny is still Penny, my work is my work. In other ways, of course, things are different. The "official" designation of autism for Penny means I am now a "stakeholder" in my own research field, as are the rest of the family. And I have had to experience systems I thought I knew well—such as the diagnostic pathway—from the flipside.

I am by no means the first academic to have a family connection to autism, but I suspect it is more common for a researcher to move into autism studies following the diagnosis of a family member. In fact, I can think of many examples where this is the case, and know of few others like mine – where the professional interest predates the personal connection.

I pride myself on being engaged with the autistic and autism communities. Nevertheless, the official arrival of autism in my family has left me with no doubt as to the limits of my supposed expertise, as in some situations my training and information has been of no use whatsoever. I hope the professional/personal gap examples below may empower parents to know that the ‘professionals’ don’t have all the answers, and also inspire professionals to do what they can to address such challenges.

How to talk about autism with my other child 

My autistic daughter has a six-year-old little brother, Hank. They have a tumultuous relationship, to say the least. When Penny is exhausted from a school day, having worked her butt off to meet everyone’s expectations of her, it is important that she does not have to meet similar expectations in our house. This is her home, and she must be able to relax here.

But what about when her preferred form of relaxation impinges on Hank? What about when Penny wants to commandeer their shared bedroom as her quiet space? What about when her repeated humming of the same phrase drives him round the bend? What about when he is given a new fleece sweater and she seizes it because it is So. Perfectly. Soft?

It is a constant struggle, even as an adult, this working out how to tread the line between supporting Penny’s needs, and also asking her to be reasonable and fair as a family member. Helping a six year old work out how to achieve this balance too?—virtually impossible.

How to ensure my daughter feels loved

My daughter is not a fan of kisses and cuddles. If she is watching a favorite TV show or playing a game, she doesn’t especially want my company—and many times she has asked me to leave her alone. Yet my son loves physical affection. I am not sure what Penny makes of it when she sees me smothering him with kisses, or giving him “just one more hug” before bed.

It troubles me greatly that I am not sure how to express my love for her. Though she and I share few interests, I do know how to make her happy—my husband and I shower her with new facts about the things which interest her, we appreciatively watch her home-made puppet shows and applaud them with unfeigned enthusiasm, we take her to the trampoline center whenever we can. But while these are all obviously the actions of a loving parent, I don’t know whether they make her aware of our love, in the same way that the traditional markers of affection so obviously do for Hank. Although it is her choice, does she feel left out of a key part of family life?

How to talk about friendship

One of the major factors that prompted us to seek a diagnosis for Penny, apart from her telling me explicitly that she knew she was different from other kids, was her difficulty making friends. Or rather keeping friends—she makes a new friend incredibly easily. She is open and gregarious, and will readily introduce herself to children her age at the beach, or on the playground. But her friendships with children she sees regularly—at school for example—are very up and down. Penny is extremely pre-occupied with trying to manage these friendships, often trying to create a gang or club in what I interpret as an effort to codify and organize her friendships into something more reliable and predictable. Needless to say, this doesn’t usually work!

My partner and I do not want to "teach" Penny how to make friends—I’m not sure this is a talent which can be taught, and I won’t consider putting Penny in any program, however well meant, that is more likely to undermine her self-esteem than develop useful skills. This leaves us with three options as far as I can see, all somewhat unappealing:

One is to tell her that this melodrama is a normal part of friendship. Accurate perhaps—I can’t really tell whether there’s anything different in her experience of friendship than that of any other girl her age; maybe she just takes it harder, or dwells on it more?—but of limited practical use.

Another option is to help her understand that her struggles with friendship are not her fault—again true, but I don’t relish suggesting that her classmates are incapable of "getting" her. I hope it isn’t true, but even if it is, I don’t see how this would make things more positive.

The third option is to simply reassure her that it is OK to only have a few friends. I feel pretty strongly about this one—if there’s anything new I’ve noticed since Penny got her diagnosis, it is that society does not endorse the option of growing up and just not having a lot of friends. Every adult asks a child, by default, about their friends. In every story, a happy ending involves a gang of friends, or a marriage. Popularity is an entirely unquestioned marker of happiness. Where are the role models for those who are happy being alone? For this reason, we’ve agreed that my partner, who has very few close friends and is perfectly happy that way, should try to talk more about this, so that Penny can see that building a big gang of friends is not a prerequisite for living a good life.

How to manage my personal connection with autism in the workplace

This blog is being written anonymously for good reason: While I value and respect the many insightful accounts shared by parents, I’ve decided that I shouldn’t share my daughter’s information online before she can make that informed choice herself. In particular, because I am often speaking about autism at public and academic events, it is important to me that Penny doesn’t become a default part of that.

On the other hand, I work with a lot of people who are also my friends, and I want them to know about what’s going on in my family. Even beyond my immediate group of colleagues-who-are-also-buddies, there are people who maybe ought to know. I’ve had to sit awkwardly in dozens of meetings since my husband and I both decided that Penny was probably autistic, and bite my tongue as people speak as if the only connection any of us has to autism is a professional interest. In one particularly tough meeting, I had to endure someone describing autism as “an unfortunately incurable disease.” I’ve no doubt he would never have dared use such language if he had known I had an autistic daughter, but challenging him would mean outing her, which I didn’t want to do.

I’ve always argued that there should be no difference in the language we use to talk about autism in the absence of autistic people versus in their presence (or in my case, in the presence of a family member). Sadly, I have become profoundly aware that this is not the case.

"Expertise" does count for something…

There have been many times over the past year or two when I have been grateful for my professional knowledge. I understand the diagnostic process, and while it was painful to have to repeatedly emphasize my daughter’s difficulties, I knew what to expect at each stage and I’m sure experienced far less stress than many parents.

I have read with interest the growing literature on the profile of autism in girls, which gave me the confidence to seek a diagnosis and allowed me to find good resources (like this excellent booklet) to share with the school and wider family. I can make informed choices, with Penny, about what supports might or might not be helpful for her.

The “everyone’s a little bit autistic” and “but she can’t be autistic, she is doing so well!” reactions from some family members were upsetting,  but being prepared for them softened the blow. Most importantly, perhaps, our familiarity with autism meant that neither my partner nor I felt any distress during the process or at the point of diagnosis.

We hope that her autism label will allow Penny to embrace and own her identity, but also that she won’t let others use it to limit her, or her opportunities. The great strides being made by the autistic community make me optimistic that her future, and that of her community, is full of hope and opportunity. I’m excited to see what she will achieve in her life, and I hope that, expert or not, I will find the right way to support her.
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Autism Researchers You Should Know: Dr. Deb Karhson

Dr. Deb Karhson is a postdoc at Stanford University, where she researches biology-rooted therapeutic approaches to improving autistic quality of life. She is also the "baby sib" of an older autistic brother. We are looking forward to having Dr. Karhson as a featured researcher during this week's #AutIMFAR chat at IMFAR, the International Meeting for Autism Research. Even better, we got to  interview her beforehand:

Dr. Deb Karhson
[image: Smiling Sri Lankan/Nigerian-American
woman with long curly black hair pushed to
one side, wearing glasses & hoop earrings.]
TPGA: Tell us about your research: What is your focus?

Dr. Deb Karhson: Broadly my current work is focused on biomarker discovery and drug development in for autism, which simply put means I’m looking for objective, testable, biological signatures of autism and whether candidate biomarkers can be leveraged for biotherapeutic development. And specifically, that means I’m interested in understanding the role of the endocannabinoid system in autism pathophysiology. The endocannabinoid system is the same system that mediates the effects of medical cannabis, so by understanding the role of this system in autism, we can also understand potential therapeutics that also act through/with the endocannabinoid system.

TPGA: What brought you into autism research?

Karhson: I am almost always preoccupied with what people are thinking and that is never truer than with my older brother (who is autistic). Growing up, I always felt like the literature never accurately answered the questions I was asking about autism or about concerned information processing. And then I realized that to study how people think meant understanding how brains worked which lead me to study Neuroscience. And now it’s my vehicle to asking as many questions as I please about autism.

TPGA: If you could be more than one person, what are some other areas of autism research you'd want to pursue, and why?

Karhson: I don’t know, off the top of my head I would split myself into at least three: one for studying language acquisition, which is probably influenced by my dissertation work in auditory attention and autism; one to study aging because there’s very little information on what “successful aging” looks like in autism and I have an older brother who is autistic; and one to study just girls with autism because I am a girl? And I think new research is coming out all the time about how different girls on the Spectrum are, which is both empowering as a woman and really interesting as a brain scientist.

TPGA: What are some changes you'd like to see, in terms of the general directions autism research tends to take?

Karhson: I wish there was greater emphasis placed on serving the current autistic population to improve quality of life. Similarly, if we keep repeating “one person on the spectrum is one person on the spectrum,” it would be nice to couch that in some hard data.

TPGA: Have you had any WTF experiences as a researcher on account of being either a woman, or a person of color—or both? If so, how did you push back?

Karhson: LOL, YES. Sometimes, it’s really subtle, like being told at national conferences that I speak English very well and am very articulate, which is super weird comment considering I’m a first-generation American and native English speaker.

Other times, it’s pretty overt like other students disparaging the need for diversity fellowship to me (i.e., calling me an affirmative action hire—which I would like to be clear, if I am, means I was put into the program to overcome the bias of an inherently prejudice or bigoted system that would otherwise exclude me because of my ethnicity and gender, not the other way around).

I also once attended a pretty elite autism workshop where I was the only under-represented ethnic minority and another participant very blatantly told me they were very surprised “to see someone like me” as a participant.

Push back for me is often time just about showing up, holding space, and speaking out. The higher up I go in academia, the more empowered I feel to really be visible and outspoken.

TPGA: As a sister to a high-support autistic adult, what are some autism myths you'd like to bust wide open?

Karhson: Can my answer be all of them? Vaccines, traumatic birth, or any other causation theorization. Should someone happen upon a data-driven answer to “what causes autism,” there will be no escaping the news of it. And the everyone has “special abilities.” If non-autistic people don’t have to come with a jewel in their belly or a Care Bear power, why are people with disabilities expected to? It is almost like a special ability is expected to justify the existence of people with disabilities.

TPGA: What are your thoughts on how society can better support and include autistic people like your brother?

Karhson: For one, stop messing with the fundamental rights of disabled people to access education, healthcare, and the ability to marry. It would be great to see larger swaths of non-disabled humans care about disability rights.

More urgently, I would really like better continuity between the end of formal state education and long-term post-education programs/systems, and more programs committed to providing meaningful jobs, community, and dignity and respect for adults like my brother.

TPGA: Do you have any advice for well-meaning young students interested in pursuing autism research?

Karhson: I would probably start by disabusing yourself of any savior complex you might have, then get involved in self-advocacy groups, and most importantly, if you don’t aren't autistic—shut up and listen. Just like any other marginalized group of humans, autistic people are the best at identifying areas in need of increased support and, in my case, research. And because of the robust heterogeneity in autism there needs to be more humans listening for overlaps and areas of commonality to improve, as those are likely to be the areas where the greatest impact will be felt for the community.

----

More about Dr. Karhson:

I completed my undergraduate training at Drexel University in biomedical engineering with a concentration in tissue engineering and biomaterials. During undergrad, I had three co-ops (its like an  extended paid internship), two of which were in the Neuroscience department at Baylor College of Medicine. Through these co-ops, I realized that neuroscience was my entry point to acquiring all academic knowledge on autism spectrum disorder (ASD), something I had been interested in since young as a baby sibling of someone on the autism spectrum. So following my co-op experiences, I completed a PhD in Neuroscience at Tulane University as a Southern Regional Education Board Doctoral Scholar. I trained in cognitive neuroscience and electroencephalography (EEG) technique to study auditory attention in neurotypical and non-neurotypical populations. For my dissertation research, I used EEG to measure brain waves and examine the intersection of auditory attention and atypical sensory reactivity in adults with autism.

However, as a baby sib, I wanted to be able to leverage my skills to address a more immediate need like better therapeutics, particularly for things like self-injurous behaviors. So now, I’m extending my training with a postdoc at Stanford University in the Psychiatry and Behavioral Science Department through a NIH T32 postdoctoral fellowship from the Center for Interdisciplinary Brain Sciences Research. My postdoctoral research is focused on understanding the role of the endocannabinoid system in autism pathophysiology. This is the same system that mediates the effects of medical cannabis and my research is studying the body’s natural version of these molecules, called endocannabinoids, and their relationship to core clinical features of autism. It is my hope that my research findings will help identify novel biomarkers of autism, assist in the development of therapeutics that improve quality of life, and elucidates contributing neurocircuitry in autism pathophysiology.

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