Keeping It Real

Something that has always been very important to me as I walk this path of parenting a child with autism is that I want to be authentic about what we experience. That means being willing to sometimes tell the hard stories, because the hard stories are still our stories, and there is no shame in them. Shedding light on the experience without embarrassment is part of acceptance. If I am going to ask for acceptance from others, I have to require it of myself.

But Cheeks’ communication difficulties means that he can’t always tell me what’s OK with him to share. I always tell him what I’m writing about, because I know he understands me. But we can’t have long, thoughtful conversations about what it means to have an internet presence, or whether he feels comfortable with people knowing some of his behavior. I can only assume that an 11 year old boy would want his mom to edit herself carefully about what she writes on a blog like this. Being respectful of him is one of the highest values I hold.

Unfortunately those two priorities are sometimes in direct opposition to one another. I want to share our difficulties, of which there are many, but I also want to protect my son’s privacy. In those moments, protecting my son wins. Every time.

Because of that, as you read this blog, you may sometimes be left with the impression that living with autism is easier than it is; filled with victories and discoveries, and peppered with amusingly awkward social situations. It can often be those things.

It can also be indescribably stressful. One study done by the National Institutes of Health measured cortisol levels of autism mothers, and found it to be present in levels comparable to that of combat soldiers, holocaust survivors, and parents of kids diagnosed with cancer. (Cortisol is a hormone released in the brain during acutely stressful events.) At any given time, autism parents may be thinking about our child’s self-injurious behavior (estimated to occur in 50% of individuals with autism), elopement (~54% of people with autism), interaction with law enforcement, seizures (possibly as high as 38% of people with autism), inappropriate trust of strangers, lack of personal safety awareness, inability to verbally communicate a name or phone number if lost, bullying (3x more common against autistic kids than their neurotypical peers), and more. Don’t even get me started on the many ways we have to fight for our kids to simply be offered the same opportunities in schools and communities as their typical peers, and the judgmental stares and comments from strangers about what they observe in us.

Screen Shot 2017-06-03 at 3.09.00 PMI’m not complaining, because I love Cheeks more than anything, and autism is part of who he is. But I am explaining that what you see here is not the whole picture, and with good reason. When the day comes that Cheeks has a fluency level to communicate his own story, I will help him with that any way I can.

For now, think of us as an iceberg, and I’m only able to show you the part that sticks out above the water. I hope you understand why that is, and that you always know there is more to our story. For us, “keeping it real” doesn’t mean full disclosure, it means remaining true to our values.

Cheeks and I still welcome your questions about him, our family, or our experience with autism. Even if we choose not to be completely transparent in our answer, we’d rather you ask than wonder.

 

 

It’s All Just Autism

Screen Shot 2016-04-12 at 11.00.38 AM
This is the spectrum people may picture as a metaphor for autism.

You’ve heard that autism is a spectrum disorder. And by that, you probably pictured it in the way a spectrum of light is often displayed, much like that image to the right. It’s linear, with levels of severity that range from one end (high-functioning) to the other (low-functioning), and it has infinite points in between that all qualify as an autism diagnosis. The objective in this metaphor is to convey that there is a vast array of symptoms that the autism spectrum can exhibit, but they all exist somewhere along a defined trajectory leading from better to worse.

This kind of thinking is incorrect, and I’d like to stop using it. 

Screen Shot 2016-04-12 at 11.01.47 AM
This is what an autism spectrum should look like.

The autism spectrum is not a bar or a line; it’s circular, like that image to the left. It still shows infinite variety, but there is no higher or lower point, no suggestion of less or more, no beginning or ending.

Why does this matter? Because there isn’t really any high- or low-functioning autism (you can read more about that here.)  I believe that using the terms high- or low-functioning is damaging to the community because it conveys assumptions about abilities and inabilities.

Simply stated: “high functioning” disregards the very real challenges an autistic person faces daily. “Low functioning” diminishes the value of that person’s skills and sets low expectations for their achievement.

I’ve noticed that some parents are quick to say their child is “high functioning.” It sounds to me as if they are saying that while their child may be autistic, it’s only “high-functioning” and therefore not like other cases. On the other hand, I have personally heard very few parents describe their kids as “low functioning.” My theory is that while there are definitely more severe cases of autism than others, these latter parents realize the pejorative nature of the term low. And if there shouldn’t be a low, there can’t be a high.

Conversely, I have heard many parents comfortably say “severe autism” but few that say “mild autism.” There is nothing about autism that feels mild, no matter where your child is on the spectrum. That disparity alone should demonstrate why we need to stop using the terms high and low. The difference lies in the use of words that can be viewed as flattering (high) vs. disparaging (low). Our goal is to describe our child, not place him or her on a scale of valuation.

To those that will say the terms high- and low-functioning do help the world to understand a specific case of autism better, I simply have to disagree. Additionally descriptive terminology is helpful only when it adds necessary or clarifying information to the discussion. For example, if I tell a waiter I want to order a steak, it’s both helpful and clarifying for me to offer that I want it cooked medium. That information carries with it a defined and common understanding. But saying high- or low-functioning doesn’t have a diagnostic criteria and therefore carries a different interpretation to anyone who uses it. It’s the equivalent of me telling that waiter I want the steak the way they make it in September. What does that mean? Exactly.

I understand that it’s hard to describe the nuances and complexities of autism, and so we prefer shortcut terms in casual conversation. But taking those shortcuts detract us from the objective of helping people outside the autism community to better understand those of us within it.

The unique neurology of an autistic person can’t be reduced to a two-word label. Certainly the intent behind using the term “spectrum” is specifically for that reason. It’s all autism. Let’s work on helping the world accurately understand what that means, rather than drawing lines in between it and taking up residence on our own side.

 

 

Why I Reject Autism “Awareness”

Each year, the month of April has been designated as National Autism Awareness Month, and the date of April 2nd is World Autism Awareness Day. These events have been brought into being by various autism support organizations, such as the Autism Society of America; and they aim to promote awareness, inclusion, and self-determination for autistic people.

I’m preparing now for my social media feeds to fill up with messages exclaiming support by wearing ribbons, installing blue light bulbs, and telling feel-good stories about instances where a neurotypical person or group found a way to include someone with autism in their world.

I appreciate the inteScreen Shot 2016-03-29 at 12.44.12 PMntion these people have when they declare their appreciation. I know they mean well. But each year I grow increasingly uncomfortable with the disconnect between these messages and the true understanding of what it means to have autism in one’s life, whether that is yourself or someone you love.

First, the whole “Light it Up Blue” campaign by Autism Speaks is a branding campaign aimed at serving that organization, and not a cooperative effort at true understanding. Autism Speaks has spent multimillions of dollars to identify the needs of the autism community such as the lack of inclusion, the financial impact, and safety issues. But they spend nothing on direct support to the community. The say offensive things about autism (For example, “These families are not living. Merely existing.” – Suzanne Wright, co-founder of Autism Speaks). I appreciate their legislative advocacy work and the role they play in funding research; they also have some good tools on their website for identifying resources and understanding the diagnosis. But many autistic individuals have trouble identifying with Autism Speaks’ mission because of their funding choices and their focus on neurological “deficits”, “cures”, and the “global health crisis” that is autism, suggesting a lack of acceptance on their part of the community of autism.  Out of respect to those with autism who feel that Autism Speaks does not speak for them, I choose not to “Light It Up Blue”.

Next, let’s discuss the feel-good stories. You know the ones… maybe the popular high school girl invites her autistic classmate to the prom (here’s one of those stories, and here’s another, and this one from a few years ago; and here’s one about homecoming, it’s evidently pretty trendy to do this). I also see stories about autistic teens being allowed to play in their first organized sport—usually the last game of the season, or the last few minutes of a game when the outcome is already clear—and to everyone’s surprise or as a result of their collusion, they score (read some of these stories here or here). These tales, while enjoyable to read, are also patronizing. They are only news because of the assumed inability for autistic individuals to access their world fully without neurotypical peers making exceptions to their usual choices.

Here’s the reality of autism. In the last year alone, my experiences parenting a child with autism have included the following:  Sitting on the floor in Target for almost an hour while Cheeks screamed, punched, and banged his head out of frustration and anxiety; and only one person in that time asked me if I needed help (it was not a staff member), although probably a dozen people entered the aisle and walked away in avoidance. Spending thousands of uninsured dollars on therapy, tutoring, and legal support to provide Cheeks with the same opportunities as his peer group. Studying special education law and individualized education plans for hours upon hours in order to provide Cheeks with the “Free Appropriate Public Education” (FAPE) guaranteed to him under Federal law, but which is not easily obtained without constant vigilance. And in recent weeks, I am investigating why Cheeks has not been invited to participate in field trips and other educational school activities offered to the rest of his grade level, which is leading to increasing isolation and self-containment in his school environment.

Awareness should have been established by now, so let’s agree that it’s not the right word for April at all. Acceptance and appreciation are the true goal. My wish for those goals is that we stop marginalizing our autistic students, peers, and community members. Stop seeing them as incapable or cognitively impaired. Realize that communication comes in many ways other than verbal, and seek to understand in those ways. Offer empathy rather than sympathy. Realize that their needs may be different from yours, but that a level playing field can be offered. Fair is not when everyone gets the same thing, but when everyone gets what they need.

If you agree with my goals, start by asking an autistic person or their caregiver something about their experiences so that you can begin your journey toward true undersScreen Shot 2016-03-29 at 12.11.40 PMtanding and appreciation. Ask me here, I’ll answer or I’ll ask Cheeks to answer. I promise you that autistic people and their allies are some of the most amazing individuals you will ever meet, because they face an intolerant world on a daily basis and usually keep their humor, hope, and joy of life anyway. A lot could be learned by most people from that, wouldn’t you agree? We welcome all of you into our community in the same way we want to be welcome anywhere. Come join us, we’ll leave the porch light on for you. But it won’t be blue.

Holiday Gift Giving to Autistic Kids

Screen Shot 2015-11-10 at 9.29.57 PMThe calendar may say early November, but the holidays are around the corner—ready or not, here they come.

At this time of year, those of us with kids in our lives find ourselves wondering what might make a good holiday gift. But a child with a communication disorder such as autism can’t always tell us. Or they may have trouble figuring out that even though we’re asking now, the gift doesn’t come until later. They might struggle to understand why they can’t expect to receive everything they asked for. In some cases, a child with autism may even ask for something that is impossible to deliver. For example, Cheeks once wanted his left thumb placed on the other side of his palm, next to his pinkie. Although I think that was just a Tuesday, not a holiday wish. And no, I still don’t know why.

Having autism doesn’t make kids alike in any way I can predict, so this isn’t a gift guide. But there are definitely some recommendations I can make about the context of your choices.

If the child you want to give a gift to a child that has focused interests (read: obsession), it might seem like the natural place to start. I urge caution. For example, Cheeks is currently very into superheroes, especially Batman. But three months ago, it was Scooby Doo. A few months before that, it was classic cartoons such as Tom & Jerry or Wile E. Coyote. Batman might not be in vogue anymore by December 25th; you might have heard there’s a little Star Wars moving coming out that could be a hit with him and a few other people. His interests are narrow, but deep, and they come in cycles. I can’t predict where we are in the cycle. If you want to choose a gift for any autistic child in your life, please don’t rely on surprises. Ask the parent to tell you outright what would be a good choice.

NO clothes! I can’t stress this enough. Most kids don’t love opening up socks and underwear on Christmas morning anyway. But the sensory challenges presented by autism mean that tags, textures, seams, colors, sizes, sleeve length, and even more are all at risk of being completely wrong. And don’t mean wrong as in, less preferred but still could be worn on laundry day when nothing else is clean. I mean it will be untouchable, not permitted even within potential eyesight of the child. I am not exaggerating. Better to avoid this category altogether.

If you like to give educational gifts, then keep mind what I have said on this blog about presuming competence. However, there are areas of developmental ability in autistic kids that are not in sync with their age. I know Cheeks has all the cognitive ability of his ten-year old peer group, but he does not have a similar communication ability. He comes home with library books from school written for a child in kindergarten, because that’s what his reading level seems like when he expresses himself. And—brace yourself for this shocker—my 4th grader isn’t interested in kindergarten books. On the other hand, he might love a sensory toy that to an outsider looks like something designed for preschoolers, because the sensory experience is calming to him. The point is, you can’t follow age guidelines in the same way as you can with typically developing kids. Talk to someone who knows the child’s abilities. If you want the gift to be a surprise to the parent too (which I don’t recommend, but there may be good reasons), then seek out a teacher, therapist, or other caregiver who knows the child well.

quotescover-JPG-85Lastly, and perhaps most importantly, please let go of the expectation that your gift will be greeted by a face lit up with holiday joy. I know it’s one of the best parts of gift giving, but emotional responses are difficult for autistic kids. It doesn’t mean they don’t feel the joy, it only means they don’t know how to express it. And if the gift misses the mark, you may hear about it in a way that would be considered rude coming from another child. Let it go, and let your real gift be compassion and understanding, and not what’s inside the box.

Julia, the Autistic Muppet

Last week, Sesame Street announced that it is introducing a new Muppet-style character with autism. I love this for many reasons, one of which is because they are making her a girl (named Julia). That’s a deviation from what would be expected, since autism is five times more common in boys than in girls. Creating this character as a girl challenges what people think they know about autism, and about who they think may be autistic among people they meet.

Read the story here: http://autism.sesamestreet.org/storybook-we-are-amazing/
Read the story here: http://autism.sesamestreet.org/storybook-we-are-amazing/

I think many people, upon hearing the news, were under the impression that Julia would be seen on the popular PBS show we know and love. In fact, there are no current plans to put her on TV. She’s only featured in one digital story book, called “We’re Amazing, 1, 2, 3!” If you were under the impression that Elmo was getting a new autistic friend in any recurring way, that’s still unclear. Although I wish we could anticipate more visibility for Julia, she’s still part of a great library of online resources designed to celebrate amazing qualities in all children.

The most intriguing reaction to the news of Julia’s character that I found was an article in the New York Times, which suggests that unbeknownst to us, The Muppets already had an autistic character. If you know The Muppets at all, you definitely know this one. He can’t figure out what his audience will find funny, he often misunderstands metaphors, and even has a verbal tic (wokka wokka wokka). You guessed it… Fozzie Bear. Read the article, and more about the writer’s theory, here.

When I read this column, it made so much sense to me. I’ve known lots of autistic kids that interact with others in a similar way as Fozzie. But the best part of all is that no one ever thought to label Fozzie as autistic. As part of The Muppets, he’s just another lovable character among many, all of whom have their own oddities. Fozzie may fit the diagnostic criteria of autism, but he’s not an autism character, or any kind of stereotype. He’s comedic without being a caricature.

Autism acceptance is not simply passive tolerance. It’s not just about finding ways for kids with autism to learn, play and function alongside their peers. And it’s not just about teaching typically developing kids to understand their peers that have differences. At it’s best, and the goal, is to make it about allowing people with neurological diversity to be just people, and not be defined by what society deems to be a disability.

I celebrate this new character of Julia. But at the same time, I just crave more Fozzie.