Acceptance vs. Tolerance – Why we need both

Acceptance vs. Tolerance

Last week I wrote about why tolerance is a more realistic expectation than acceptance for American society. This week I want to discuss why acceptance is an essential part of any civilized nation, including the United States.

Wait. What?

I know, it sounds like I’m starting to contradict myself, but stick with me. I promise both viewpoints (pro-tolerance and pro-acceptance) are completely compatible and possible for every individual to hold.

Acceptance is essential to civilization.To refresh your memory, tolerance is about respecting beliefs, opinions, and lifestyles you disagree with. Acceptance is about approving and viewing favorably those different from you. Note the differences in the definitions. Tolerance has to do with beliefs, opinion, and lifestyles. Acceptance has to do with the people holding those opinions and beliefs and living those lifestyles.

While I completely agree that some beliefs, opinions, and lifestyles are incompatible and unacceptable to different people, I fully believe that every person should be accepted and respected even if you don’t agree with the way they live or think. The vast differences between people are part of the reason America is sometimes referred to as the great melting pot. We’re all in this together, and whether we agree with the guy down the road or not, we need to accept him as a valid, important human being.

In the debate between tolerance and acceptance, the arguments over whose religion is right and which lifestyle is best, people often miss the point. That point? It doesn’t matter. We’re all individuals with our own way of doing things. We’re going to find like-minded people, but not everyone is going to agree with us and that’s fine. That’s why tolerance is essential to the survival of American society. Yet without acceptance of each individual as a person, society is still at risk of failure and chaos.

Let me give you an example of why acceptance of people as valid and important beings is essential.

April is Autism Awareness MonthApril is Autism Awareness Month. While most people know autism exists, far fewer truly accept autistic people as being as valid and important as non-autistics. This is true of many disabilities, especially the invisible ones. That lack of acceptance and the general theme of seeing autism as the person being broken or needing to change in order to be acceptable hurts. I say this as an autistic adult. We need to be viewed with the same respect and acceptance as our neurotypical (non-autistic) counterparts if we’re ever going to thrive.

Yes, autism poses great challenges. No, it’s not easy, either for the autistic or the people around them. But we are people. We are not broken. We are different, and most of us don’t mind being different… until people start telling us there’s something wrong with us or refusing to give us a chance.

Acceptance can change that. It doesn’t take much to accept someone who is different from you. All you have to do is quit thinking, “Hey, that guy’s different” and start thinking, “Hey, that guy’s a person just like me.”

The National Down Syndrome Conference has a campaign I love and wish we would see for more disabilities, religions, and ethnicities. It shows how people with Down Syndrome are “More Alike Than Different” when compared to people without the disorder. That’s how everyone needs to view the people around them. Instead of focusing on the differences, focus on the similarities.

That’s where acceptance begins. When you can look past whatever makes the person different from you or the beliefs you may not agree with and respect the person as a person, that’s when acceptance happens. That’s when the contention and hate stop and the real discussions and debates on the things you tolerate but can’t accept happen.

What do you think? Is important for everyone to accept everyone else, or is tolerating the existence of those you don’t agree with or understand enough? Or do you think something else entirely?

The downside to “curing” autism

Autism Awareness Month ended with April two days ago. Normally I would have written a post raising awareness of some challenge faced by those of us on the spectrum and encouraged acceptance, or perhaps created a post about the positives that can be found in life with autism. Instead, I chose to wait an extra couple of days to write this last post because of a report on a news station in Indianapolis.

According to what I had heard about this report, it would essentially tell parents how they could cure their autistic kids through behavioral therapy. Great news, right? Well, only sort of. I could see several ways for this report to go, so I decided to hold off forming an opinion until I had a chance to watch it.

The report turned out to be about what I expected, where they implied that autism can be cured through applied behavioral analysis (ABA) therapy, but they made sure to avoid coming right out and saying it’s a cure. Throughout the report, I listened to parents who were amazed and thrilled that ABA therapy cured the signs of autism in their children. Only one couple actually claimed their child had been cured of the diagnosis.

Don’t get me wrong. I’m thrilled that these parents had such a great experience and that their children are doing so well. It’s wonderful that they were able to overcome huge challenges and make tremendous progress toward acting “normal.”

But here’s my concern, and it’s based on my own experience and the experiences of other adults on the autism spectrum. Let me preface this by saying I wasn’t officially diagnosed with autism until I was an adult, and as a result I never had any kind of behavioral therapy or social skills classes or any of the other treatments children routinely receive now. However, I have read the stories of and heard from other adults who were diagnosed as children and have been through those treatments, and our experiences are quite similar.

The parents in this news report mentioned typical autism behaviors such as hand flapping, meltdowns, verbal challenges, etc. Through ABA therapy, their children ceased to show these unwanted behaviors and gained the ability to speak plainly. This is good, but it’s also where the concern comes into play. While these children now appear normal by all outward signs, what’s going on inside them?

I spent a good portion of my childhood and teen years learning to act like everyone else around me. I wasn’t always good at it, but I could do it well enough that I came across as occasionally quirky and pretty shy to most people. They couldn’t tell that I was autistic just by looking at me, and I became well-trained to hide those behaviors that would make me obviously different. I never really cared what people thought of me, but hiding the signs of autism was easier to deal with than putting up with ridicule or being told I shouldn’t do whatever it was (although I was never given a reason why beyond, “people your age don’t act like that”).

Sounds good, right? I mean, I could blend into a group, I wasn’t walking in circles and flapping my hands, I wasn’t having meltdowns in the middle of church. The outward signs of autism weren’t obvious, so no one could tell I was on the spectrum.

But you have to keep in mind autism isn’t just an external presentation. No matter how normal I looked or how well I appeared to fit in, I was still suffering on the inside. I still didn’t understand the social cues, body language, and jokes that everyone around me did, but I could fake it well enough that I just came across as a little naïve or gullible. I had friends, participated in choirs, was included in social activities… you know, all those things “normal” kids do. Yet inside, I always knew I was different and never felt like I fit in with any group. I couldn’t explain why that was, but I knew from an early age I wasn’t like everyone else and no amount of pretending I was changed that.

Fast forward a few years to adulthood. I began to hate hiding who I am on the inside, but by that time I was so well trained to appear normal that I was scared to death to just be me. Sitting on the floor and rocking when anyone other than my closest family members were around was out of the question. Half the time, I wouldn’t even do it around family for fear of ridicule or being told I shouldn’t. People my age behaved a certain way, and I pretended I could do the same things, but I always felt out of step, like I had to run to keep up when everyone around me strolled at a leisurely pace. If I said, “Hey, I can’t do that,” I was told to try harder and to quit limiting myself. I couldn’t get through to people that the limitations were real because of a neurological disorder, not because of laziness or fear.

My story is not that unusual, and neither is the anger at having to hide myself just to make the people around me happy or more comfortable. So many of us have become adept at hiding who we really are, but all that does is make life harder, not easier. Fitting in and acting like everyone else may seem like a blessing to parents of autistic kids, but being true to yourself is more important. The ability to accept yourself, weird and repetitive behaviors and all, goes a long way toward finding the happiness that all parents want for their kids. This is why I push acceptance so hard. If I could have been accepted as I really am instead of as who I pretended to be my life would have been so much easier. I’m still working toward allowing my autism to show when other people are around, but it’s not easy to let people see me as I really am after so many years of hiding behind a mask.

Autism, regardless of external appearances, still affects the way a person experiences life. It creates real challenges and limitations, no matter how normal the autistic person may appear. The more normal an autistic person appears and acts, the higher the expectations that are placed on them. Maybe they can live up to them, maybe they can’t. But by thinking a few years of full-time (forty hours or more per week) behavioral therapy will make an autistic kid into a neurotypical kid, I’m afraid a huge disservice is being done to those kids.

I firmly believe ABA (when done properly) plays an important role in helping kids on the autism spectrum learn to cope with the world around them, but I don’t think it should be touted as a way to cure autism. By all means, make life easier for those of us on the autism spectrum, but please don’t try to force us to be people we’re not. We are autistic. It’s hardwired into our brains, and no amount of therapy will change that reality.

Sensory Processing Disorder and Autism

Although sensory processing disorder and autism spectrum disorders don’t always occur together, they frequently do. As someone whose brain has never processed sensory information in a normal manner, I can tell you that it can range from fun to weird to irritating to downright nauseating. It all depends on the type of input, how my brain perceives it, and what other stressors I’m dealing with at the time.

So, what is sensory processing disorder? Well, basically it’s when your brain has trouble integrating sensory input properly. This is why it’s sometimes referred to as sensory integration dysfunction. I once wrote an article on sensory integration issues, and I have yet to think of a better explanation than the one I used in it:

Simply put, it means the brain doesn’t process sensory input in a normal manner. It can cause under-sensitivity to stimuli, such as not feeling pain. It can cause extreme sensitivity to stimuli, such as finding a light touch painful. It can cause a person to taste something odd, such as coconut tasting like a brush fire smells.

Now, those of you who have never dealt with sensory issues are probably wondering, “What is it like?” To answer that, I’m going to share an excerpt from The Key to Charlotte, my inspirational romance that has an autistic heroine.

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Cover image for The Key to CharlottePastor Ed walked over, his usual welcoming smile in place as he shook her hand. “Good morning, Charlotte. The church looks wonderful, as always.”

She withdrew her hand from his, resisting the urge to wipe it on her skirt to rid her skin of the feel of someone touching her, and signed “thank you.” Then it hit her. She hadn’t wanted to wipe away the feel of Zakaria touching her hand yesterday. What did that mean?

Confusion caused anxiety to form, and her defenses against sensory input failed. The noise of the people overwhelmed her, the numerous scents from soap and perfume threatened to suffocate her, and the lights burned into her brain like lasers. Unable to deal with the heavy assault on her nervous system, she walked away from the pastor and went to the basement.

More people were down there, finishing up cups of coffee while they talked, their voices echoing off the cement‐block walls. The lingering scent of coffee, the sticky sweet smell of doughnuts, and more soap and perfume filled the air, and Charlotte escaped into the hall that led to the janitorial closet, praying for a quiet place with no people and few scents so she could destress before she went into a meltdown. The uncontrollable crying might relieve stress and enable her to function, but it was exhausting. Plus, having others witness it was embarrassing. She didn’t know what she’d do if Zakaria saw her crying like that. Would he think she was a freak, or worse, reject her? She couldn’t bear the thought of losing him as a friend because of something she couldn’t control. She wanted him to see her as a woman, someone who was strong and capable—a person who could love.

The shrill voices of small children in the nursery surrounded her, making her already overloaded system threaten to break. She fought the emotions lurking just below the surface, knowing that if she started crying now, she wouldn’t stop until all of the environmental stress overloading her system had washed away with the tears.

She quickly climbed the other set of stairs, struggling to figure out where she could go to calm down enough to survive Sunday school. Although home would be quiet, her parents would worry if she left the church. No, she had to find somewhere inside the building. The restrooms were out because people would undoubtedly need to use them. The classrooms wouldn’t work, either, because everyone would be trickling in for Sunday school. Maybe the office?

Stepping into the hall, she spotted a couple of the women going into the office, talking and laughing. Her last hope of peace vanished, and she nearly lost her battle with the tears. She wrapped arms around her middle and rocked from side to side, fighting to hold herself together.

~~

While sensory processing issues aren’t always this severe, it does give you a glimpse into what it’s like to live with sensory processing disorder. And I can assure you that even though Charlotte is a fictional character, the descriptions are accurate. After all, I based this scene on my own experiences.

If you want to learn more about sensory processing disorder, there is a ton of information online that a quick Google search will help you find. You can also check out my article “What are Sensory Integration Issues?” which provides a few links to informative websites.

If you’d like to read more of The Key to Charlotte and find out how an autistic woman finds and experiences romance, you can purchase a copy from Pelican Book Group, Amazon, Barnes & Noble, All Romance eBooks, or other online retailers.

Sweet Saturday Sample – The Key to Charlotte

Since April is Autism Awareness Month, I’ve decided to share an excerpt from The Key to Charlotte, my inspirational romance with an autistic heroine.

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Cover image for The Key to CharlotteCharlotte switched off the vacuum and breathed a sigh of relief. The silence in the small church was pure bliss. She pulled the plug from the wall and coiled the cord around the top of the vacuum, then returned it to the janitorial closet in the basement. Turning around, she pulled out her cell phone and checked for reminders.

Take the rag bucket home.

Yes, she needed to wash the rags and kitchen towels. She returned the phone to her pocket and grabbed the bucket handle. As she headed upstairs, she heard the sound of a guitar coming from the sanctuary. Was someone playing a CD? It sounded like live music, but she’d never heard anyone in the church play a guitar.

Drawn by the soothing strains of the strings, she turned right at the top of the stairs.

No one ever came in the church while she was cleaning. The entire congregation knew her schedule–Tuesday and Saturday afternoons–and they always made sure to come at a different time. Charlotte had never been sure if it was because they didn’t want to get in her way or if her parents had talked to them about the importance of routine for her. When she was little, she’d gotten upset by people showing up unannounced, but now that she was twenty-three, she liked to think she could handle surprises a little better.

She peered through the open doorway and saw a man sitting on the edge of the platform by the plain wooden altar playing a battered acoustic guitar.

Her breath caught in her throat and her heart raced as she studied him. Not only was he a talented musician, he was gorgeous, more gorgeous than anyone she’d ever seen in this small Indiana town. His black hair was a little shaggy but stylish; his straight nose, high cheekbones, and tan complexion made her think of Native Americans and Italians; his lean build clothed in faded blue jeans, an olive green T-shirt, and worn-in sneakers, made him look laid back. Peace filled his face as he strummed his guitar. The corners of his mouth turned up slightly, making Charlotte wonder if the sound of a guitar brought him as much joy as it did her.

Suddenly, he stopped playing and looked up at her. She tightened her grasp on the bucket handle.

He studied her with the most beautiful, warm brown eyes she’d ever seen. His smile caused her heart to flutter. “Hi there. Are you Charlotte?”

She nodded.

He didn’t seem to mind that she shifted her weight back and forth. Just as well. If she didn’t rock to release it, the nervous energy building under his gaze would make her cry.

“Pastor Ed told me I might run into you if I came this afternoon. I’m Zakaria Rush, the new director of children’s ministries.” He laid his guitar across his knees and chuckled, a deep, rich sound that warmed Charlotte clear through. “It’s a fancy title for a guy who didn’t want to grow up and found a way to turn it into a career.”

~~

You can purchase a copy of The Key to Charlotte from Pelican Book Group, Amazon, Barnes & Noble, and other online retailers.

Be sure to head over to Sweet Saturday Samples for links to more excerpts!

Interview with R R Smythe

Please welcome my fellow Astraea Press author R R Smythe!

Tell us a little about yourself.

Hmm. Well, by day I am a pediatric therapist. I specialize in the autism spectrum, sensory processing and feeding disorders. So I spend my days with food, puke and tears. And no that is not a rock band lol.

By night, I write. I’ve been published since 2006. I was research assistant to NY Times Best Seller Jodi Picoult for her autism book, House Rules.

What is autism?

Well, depends who you ask. With the advent of the DSM 5, there will only be one autism. I, for one, believe in the spectrum.  From full blown autism the whole way up to asperger’s syndrome.

Here’s the wikipedia defintion:

Autism is a disorder of neural development characterized by impaired social interaction andcommunication, and by restricted and repetitive behavior. The diagnostic criteria require that symptoms become apparent before a child is three years old.[2] Autism affects information processing in the brain by altering how nerve cells and their synapses connect and organize; how this occurs is not well understood.[3] It is one of three recognized disorders in the autism spectrum (ASDs), the other two being Asperger syndrome, which lacks delays in cognitive development and language, and pervasive developmental disorder, not otherwise specified (commonly abbreviated as PDD-NOS), which is diagnosed when the full set of criteria for autism or Asperger syndrome are not met.[4]

How does are people on the autism spectrum affected?

I would say the most prominent feature is impaired sensory processing. Their senses are either over-reacting or under-reacting.

An example of a feeding child, with over sensitive skin may gag at the sight of food on her tray. Touching it feels noxious and the inside of her mouth is so sensitive, she prefers NOT to eat rather than tolerate the texture. Fun, right. Fun, no.

Please tell us about a personal experience with autism.

Autism is no longer a death sentence—ie you will be institutionalized. With the gamut of interventions out there, both biological and behavioral  and therapy options out there, many many people make significant progress.

We hear so much about the challenges faced by people on the autism spectrum and their families. Can you tell us something about the other side, the good things about autism?

Well, half of NASA probably is on the spectrum lol. It’s often paired with genius level intelligence. If you are able to control the sensory issues and tweak the social anxiety, there is often a massively complex and intelligent person underneath.

Thank you for being here today!

About R R Smythe:

R R Smythe writes Young Adult Historical Thrillers and Fantasy, with romantic elements. She can be found digging in her garden, tapping out secrets on her laptop or hiding behind her enormous to be read pile. She believes in six impossible things before breakfast, and is in visual nirvana with any Tim Burton film.

Heart Murmurs cover artBlurb:

Mia Templeton is dying. Or was dying. After receiving a heart transplant, her world is forever altered. Before her eyes open, she overhears her donor was a murdered girl of the same age. Whispers invade Mia’s head before she’s even left the recovery room. She develops tastes for foods she once hated, and dreams so vivid, she feels they’re someone else’s memories. Her personality is altered—once a quiet doormat, she’s now inexplicably flippant, and confident. And her unexplained longing for the new boy at school is borderline obsessive.

Morgan Kelley is new. Adopted by his aunt, a descendant of Louisa May Alcott (Little Women), he’s thrown into life at a new high school, and as a historical guide for his aunt’s store—a homage to all things Alcott. Conspiracy theories abound about his mangled lower leg—but no-one has been brave enough to ask. Till Mia.

Something is awry with the Underground Railroad tunnels beneath his aunt’s home. Mia and Morgan enter the world of a secret Literary Society–and are drafted to help bring a rogue Literary giant to justice, solve the mystery of her heart donor, the the real fate of Beth from Little Women.

Heart Murmurs is available from Astraea Press, Amazon, and Barnes & Noble.

I am not a puzzle

Warning: Some may find this post offensive, but it is not intended to be. This is how I feel, and I think it’s important during Autism Awareness Month to share my perspective as an autistic adult.

As the prevalence of autism increases, so do the number of puzzle pieces and puzzle piece awareness ribbons on T-shirts, websites, jewelry, car magnets, etc. The things are everywhere, and they are a recognized symbol of autism. While I appreciate the awareness being raised, I struggle with the emblem.

Why? Because it says that I am a puzzle, something that needs to be solved. Many people use the symbolism of the puzzle piece as a kind of metaphor for the search for a cure. If they could just find that missing piece, they could cure autism. Long-time readers of this blog know that I am not in favor of a cure.

Autism is not a disease. I am not a puzzle.

Yes, I have an autism spectrum disorder. Yes, it makes life difficult for me and my family. No, I don’t want to be cured or have my autism taken away.

I’m sure that last one is confusing to a lot of people, both autistic and neurotypical (non-autistic). Unlike some autistics, I see autism as a different way of life. My brain is wired differently than a neurotypical brain, but that doesn’t mean I’m broken. It means I’m different. Being different has allowed me to think in ways others don’t, see the world in ways others miss, and have a wonderful imagination that has allowed me to become an author. Despite all the difficulties, I like who I am.

I know I confuse people, and they struggle to understand me. But does anyone ever truly know everything there is to know about another person? Do all neurotypicals think in the exact same way or experience the world in an identical manner?

Since they aren’t clones or robots, the answer is no. Everyone is different, with their own unique personalities. People on the autism spectrum are the same. We’re all individuals with our own unique traits. Yes, we share some similarities that set us apart from neurotypicals, but if the majority of the population was autistic, neurotypicals would be the odd ones. Does that mean there is something wrong with not being autistic? No, it just means that your brain is wired differently.

Accepting those differences and learning to live with them is what raising awareness should be about. Treating autism like a disease that needs to be cured or acting like a person on the autism spectrum is broken and needs to be fixed is degrading and hurtful. It makes me feel as though I’m somehow less in society because I was born with a brain that’s wired differently from most.

The puzzle pieces and the meaning behind them just highlights that feeling and lets me know that society has a long way to go before autism awareness becomes autism acceptance.

I am not a puzzle to be solved. I am a person with feelings and dreams and a unique personality.

Let’s turn Autism Awareness Month into Autism Acceptance Month. Once autistics are accepted as being a part of society that isn’t going away, perhaps the focus on finding what causes autism and searching for a cure will change into something that will help autistics, such as support and services to help those of us on the autism spectrum overcome or circumvent our challenges so that we might have the fulfilling lives every human deserves.

World Autism Awareness Day 2013

It’s World Autism Awareness Day once again. So often we hear about children on the autism spectrum and what kinds of challenges they face, not only as kids, but as they transition into adulthood. A lot of times, I read or hear something about autism that takes such a negative outlook, describing how hard life is both for the people on the autism spectrum and their families. I won’t deny life can be difficult and some days doing the most basic things can seem like insurmountable obstacles. If I said life was always sunshine and rainbows when you have an autism spectrum disorder, I’d be lying. But why should so much focus be placed on those difficulties?

Instead of focusing on what people on the autism spectrum can’t do, let’s focus on what autistics can do. Positive thinking improves a person’s outlook on life, and celebrating even the smallest of successes can bring a smile to everyone’s face. It’s all in how you look at the life you’ve been given. If that life happens to include autism you’re in for a wild ride, but it can be one of the best rides you’ll ever have.

Despite sometimes huge challenges, people on the autism spectrum are capable of finding ways to express themselves and have meaningful social interaction and relationships. Some even go on to do great things. If you find that hard to believe, look at Temple Grandin and Ari Ne’eman.

Just like with any other group of people, those on the spectrum have a wide range of abilities and talents. Much attention is given to those whose interests and talents lean toward math, science, and computers, but there are also many on the autism spectrum whose interests and talents lie in the arts. For some amazing examples of the work these talented spectrumites can do, check out the Artists and Autism page on Facebook.

Now, since I’m an author and autistic, allow me to give my own personal example of what a person on the autism spectrum can do. Today is World Autism Awareness Day, but it’s also release day for my first full-length novel, Battlefield of the Heart. It’s an inspirational romance that delves in the challenging topic of PTSD in combat veterans.

This is what autism can do:

Battlefield of the Heart cover artBlurb:

What started out as a bit of research for a sociology paper quickly turns into much more than Cindy ever expected. But can she survive Danny’s PTSD long enough to form a relationship with him?

Cindy Waymire, a college senior in search for a topic for an upcoming sociology paper, finds more than a topic when she meets Army veteran and college freshman Danny Flynn outside the student union. An undeniable attraction to this troubled veteran leads her on a difficult and winding path that brings her to a crossroads — get into a relationship with a man who has serious mental health problems or turn her back on one of the best men she’s ever met.

Can Cindy set her fears aside and follow her heart, or will the ghosts haunting Danny’s mind end their relationship before it begins?

Battlefield of the Heart is available from Astraea Press and Amazon. Coming soon to Barnes & Noble and other online retailers.