“Invisible Victims” or Pt. 1 of TIME really knows how to raise eyebrows in the autism community

Boy oh boy. In the past four days, I have spotted two separate headlines from TIME Magazine that caused me to think, “Really? Some editor approved THAT headline?”

The first was at the end of last week: “Autism’s Invisible Victims: The Siblings.”

Yesterday, they published, “Redefining Crazy: Changes to the Bible of Psychiatric Disorders.”

I’m not gonna lie. The second one really pissed me off. But we’ll get to that in another post.

First I give my time to my demographic: the siblings.

When I saw the title, there were two thoughts that sprung forward. 1) Oooh goody! An article about siblings! Don’t see those in the mainstream media very often. 2) Invisible Victims? That’s.. err.. interesting language that I definitely don’t agree with in my particular situation. 

I highlight the phrase my particular situation because I think it is so incredibly vital that I emphasize the variability of the autism experience before I proceed with my reaction to the article. No two kids with autism (autism, used here, is broadly referencing the autism spectrum–from Asperger’s to Autistic disorder to PDD-NOS) are the same. No two parents experience their child’s autism in the same way. No two siblings have the exact same childhood or exact same experiences with their special sibling. Our life experiences and trajectories are ours and ours alone, and we do ourselves a great disservice when we try to measure them against someone else’s yardstick. They don’t have our unique background, so how could we even begin to compare ourselves and deign one “better” or “worse” than the other?

I hope that is very clear, and that any dissenting views be expressed in a respectful manner. In turn, I sincerely hope that I do not offend or minimize anyone’s experiences here.

To understand my perspective and where I’m coming from, I highly encourage you to visit and read the Meet Dude page, especially if you’re a first time visitor.

Right. So. Siblings.

I couldn’t quite put my finger on why the article title didn’t sit right in my stomach. But then I stumbled across this blog entry from John Elder Robison, a well-known author, speaker, and self-advocate in the autism community. In his explanation, the word “victim” inherently implies that there is a, whether intentioned or not, “victimizer.”

Using our trusty SAT analogies (how do you like that throwback?!)… victim : victimizer :: “typical” sibling : sibling with autism

Huh. As if our siblings with ASD didn’t have enough going against them already.

But let us proceed.

To quote from Ms. Cain’s article:

“…one large affected group is being routinely overlooked: the siblings. Of the 839 studies reported within the past four years in the Journal of Autism and Developmental Disorders, only four were devoted to siblings, and their primary focus was on genetic risk rather than life experience.”

I agree that the research community does not do enough qualitative studies on the familial and especially sibling experience. Considering the fact that individuals with autism live just as long as everyone else, and that the sibling relationship can easily span over 70 years and far exceed the longevity of the parent-child relationship, I truly find it baffling that there isn’t more support out there for us siblings.

I also understand it from parents’ and providers’ points of view. Don’t tie the typical child’s identity to their sibling’s. Don’t force them to grow up faster than they should. They should be a sibling, not a second or third parent. They should be able to choose how involved they want to be in their sibling’s life as they age. So on and so forth.

I get it. I really do. But at what point is it appropriate to start preparing the sibling for what’s to come? Because it’s going to come, and there’s no use trying to pretend it won’t.

Thirdly, I understand why all the research dollars go to studying the causes of ASD and the potential interventions. Researchers are under an absurd amount of pressure to find something, anything that will explain and potentially reverse the rapidly rising prevalence rates. Families are looking for immediate solutions to help their children in every day life. If my child wasn’t so sensitive to crowds and sounds, maybe we could get through a 20 minute trip to the grocery store without an epic meltdown. If my child would look me and others in the face, maybe he would learn to read the social cues that come so naturally to us. His peers are going to eat him alive if he doesn’t learn the social graces.

You see how complicated this is? Families with autism get walloped on two fronts. 1) What can I do NOW to help my child? 2) What is going to happen in the long term?

The immediacy of Item 1 almost always wins out, and I completely understand why. Anytime I start thinking about where I might be/what I might be doing in five years, I get overwhelmed and stop. Because it’s easier to just wake up and go through each day. Because when you make plans, life tends to laugh at you.

Back to the article.

“Perhaps the most striking motif across interviews was the fierce devotion they showed to their affected brother or sister. One youngster relived a catastrophic event when her brother quietly drifted away while in her charge. The image of his wandering the streets, unable to speak his name, was forever etched in her mind, her carefree lollipop days forever gone. Gripped by the specter of losing him again, she became as vigilant as a tiger mom and created an invisible tether connecting each to the other.”

(Raises hand). Guilty as charged on a few counts.

Fiercely devoted and vigilant as a tiger mom is probably a good way to describe me with Dude. On the spectrum of third parent vs. sibling, I’d say I lie somewhere in-between with a slight preference toward third parent.

In regards to the loss of carefree lollipop days.. I half agree. I feel like I was always a bit more of a serious child, and have turned in to a bit more of a serious adult. But how much of that was inherent in my nature and how much was a result of my familial experience? I’ll never know. And that’s ok because I like me.

Sure, there are slightly traumatic experiences that I wish didn’t occur when I was younger. When I was in 7th grade, Dude walked out the front door. I was doing homework upstairs in the office and Mom was standing in the driveway talking to his bus driver. He walked out the front door and we didn’t hear or see him. He had never done it before. We weren’t prepared because we didn’t know we needed to be. When we realized he was gone, I hopped on my bike and started riding around the neighborhood as Mom dialed 911. I turned right out of our driveway. It turns out Dude had turned left. He wandered through the neighborhood, crossed a busy street during after school traffic, and showed up on our aunt’s front porch. She realized what had happened and quickly returned him to Mom. Mom sent our next door neighbor out to find me. The poor messenger found me on the opposite side of our neighborhood, sitting on my bike, sobbing with fear.

Not an ideal memory, but afterwards I still cared about age appropriate things like when my braces were coming off, why boys wouldn’t like me like that, and how to tame my frizzy, curly hair.

In present day, I always keep a watchful eye when I’m with Dude in public. We’ve had some run-ins with elopement issues in the past few years. Turns out the normally slow as molasses kid can run REALLY fast when he gets upset about something. Go figure. When we’re in public or what I consider a non-contained environment, I’m always watching him, vigilantly taking in his body language, looking for the cues that show when he’s getting overwhelmed. When I see him starting to bubble over, I stay close, lightly holding an arm or the hem of his shirt, ready to grasp tightly if necessary.

When the four of us are all together in non-contained spaces, our parents and I rotate who’s on Dude duty so that the others can take a break and socialize. It’s a nonverbal agreement that we’ve worked out over the years. Dude is low key and happy as a clam 99.5% of the time, and we are immensely blessed that that is the case. But as a family with a child with autism, you have to be prepared for that 0.5% of the time so you’re not blindsided.

“Despite their devotion, most siblings also resented the affected child. Though they fully appreciated the burdens their parents shouldered, they lamented a family that totally revolved around one child.”

Nope. Just nope.

The sibling relationship, whether you have a special sibling or a typical sibling, is a process. I’m willing to bet that anyone who has a sibling probably didn’t like or get along well with that sibling at one point or another. According to my 5th grade Language Arts copybook, I was not a fan of autism and Dude at that time. AND THAT’S OK. I wouldn’t expect most 5th grade girls to be fans of their younger brothers 100% of the time. That’s NORMAL. Whether or not your sibling has special needs, that is normal and that is ok.

Not gonna a lie. In those first 5-6 years after the diagnosis, a lot of time was devoted to Dude and his therapy. But then they gradually cut back on his in-home ABA program. Through the years, my entire family came to my dance recitals and most of my volleyball tournaments and marching band competitions. If Dude needed a break, that was fine, but he still came with my parents. We went to the beach for a short vacation every summer. We even managed to go to Disney World twice. We had to adjust and make accommodations to create pleasant enough experiences for everyone involved, but we did it. It’s a testament to my parents that I appreciate what they did and continue to do. No resent. Just respect.

“Not surprisingly, many envied their friends’ “normal” sibling relationships. They longed for mutual support, shared secrets and the imaginative play enjoyed by typical sibling pairs.”

Ms. Cain has hinted at my dirty secret.

One thing that admittedly drives me insane? Typical siblings who refuse to get along with each other well into their 20s.. Siblings who have little to no relationship with each other in their adult lives. This person (or persons) is your tie to your earliest memories. They grew up in the same house as you. They remember the same things about what your parents said and did. They can fill in the blanks when you’re looking at old photos and you don’t remember the context of one. They have the same memories from family vacations, rainy days stuck in the house, walking to the bus stop.

I don’t have that. Through no fault of anyone’s, I don’t have that. And I think that’s something I’m going to have a real problem with when I get older because I love history and ethnography and stories and memories.

I’m amazingly lucky in that I was brought up very closely with five cousins. We share a lot of the memories mentioned above. But it isn’t the same thing as being able to talk through memories with the person who grew up with the same roof over his head and the same parents.

So to those of you who are still bickering with your siblings like you’re 8 and 10 years old, CUT THE BULLSHIT AND JUST LOVE AND RESPECT EACH OTHER.

“They fervently envied the freedom to quarrel without fear of disaster.”

I didn’t have a sibling to fight with. Dude didn’t even say his first word (“go,” in case you were wondering) until he was 4 or 5. He didn’t begin piecing short phrases together until much later. To this day, even though he has made leaps and bounds with his expressive language, it is still nowhere near to having a give and take conversation that builds on what the other person is saying. And that’s ok. That’s Dude. His world is unadulterated and beautiful and he makes me take a breath and just be.

However, because Dude is my brother, I had zero experience fighting with a child in my own home. You would think I would have gotten the practice and built up thick skin from growing up with my cousins, but I was always overly-sensitive, always took things personally, never understood why kids chose to fight about the silliest things. There was no way for me to ever fight with my brother, so I never got the practice, never got good at it. Not that that’s something you should aspire to, but it is normally part of the sibling experience.

I found it interesting that Ms. Cain did not devote much of her article to the discussion of the dreaded future. She simply mentioned that, “Most were prepared to assume full responsibility for adult siblings in later years…” No mention of how the presence of ASD in the family line may affect the decision to have children, relocate, etc.

I have had the unique experience of discussing my experiences as a sibling with a room full of parents whose children are newly-diagnosed on the spectrum.

I’ll never forget this one mom who rapidly fired questions at me:

“Are you married? Engaged?”

“No.”

“Dating?”

“Yes, but not currently seeing anyone.”

“Well, whoever you date is going to have to know that you have a brother with autism.”

“Yep.”

“And before you decide to get married, based on what you said earlier, he’ll have to know that your brother is going to be in your life because you’ll eventually retain legal guardianship.”

“Yep.”

“And you might have kids of your own with autism.”

Her tone was almost accusatory. Like she was accusing me of not thinking through these things. In reality, she was probably voicing her concerns for herself and her children and projecting them on to me, which is fine. If that’s what she needed in that moment, that’s fine.

Because none of those questions were shocking to me. Because I’ve thought through every single scenario. Because it’s the curse of being a woman and a sensible-minded one at that.

I’ve learned that this particular line of rumination is not healthy for me, so I avoid it. As I said earlier, anytime I start thinking about where I might be/what I might be doing in five years, I get overwhelmed and stop. Because it’s easier to just wake up and go through each day. Because when you make plans, life tends to laugh at you.

In summary, Ms. Cain’s article was not aptly titled. Some of her points resonated with me, and some I downright disagreed with. All reactions were in direct result of my personal history and experiences.

Sibling love. Christmas Eve 2005

Sibling love. Christmas Eve 2005

I will close by saying that, cliche as it is, I wouldn’t trade Dude for a different brother. We have a wonderful relationship of mutual love and respect. I’m pretty sure I get him, and I’m pretty sure he gets me. We may not be able to have conversations about rainy days stuck in the house, but we can giggle and sing songs back and forth and just sit in amiable silence. And if those are the memories I’ll have of my brother when we’re old and grey (except he’ll probably be bald instead of grey because his hair is already thinning a la Prince William), then I think I’m doing just fine.

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3 thoughts on ““Invisible Victims” or Pt. 1 of TIME really knows how to raise eyebrows in the autism community

  1. OMG THANK YOU!! I just saw the link to your blog on SibNet’s FB page. Amen…I too have a brother with autism and was rather taken aback by this article. I mean, seriously? There are actually 4 of us (2 younger sisters as well) and we never revolved all around my brother. I mean, yeah, you adjust and adapt, etc, but I too am so grateful my parents paid attention to ALL of us! And besides, my brother is an awesome guy anyway. So from one sib to another, thanks for being so eloquent!

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