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When I Need to Leave My Comfort Zone as an Autistic Person

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It’s surprising how many people know and love C. S. Lewis’ “The Chronicles of Narnia” but who are unfamiliar with his other books. Perhaps it’s the assertive faith of his less-read works. Perhaps they seem dated.

The narrator in my favorite Lewis book, “The Great Divorce,” lives in a “grey” town. A bus regularly travels from this town to the foothills of heaven. Anyone can get on the bus. Once they arrive, the ghostly passengers learn they will become more solid and happier as they journey further toward the mountains. They’re all welcome to stay in heaven. None do, preferring the familiarity of “grey” town to the uncertain promise of something different, something better. They all get back on the bus and return home.

This allegory about the prisons we construct for ourselves has stayed with me since I first read the book almost 50 years ago. Not because I believe in Lewis’ concept of heaven and hell, but because I know from my own life how easy it is to build a safe, predictable, unthreatening prison out of fear.

Like many autistics, I have a long list of things that make me uncomfortable. Chewing, tapping, rhythmical sounds. More than one person speaking at a time. Social situations. Crowds. Anything loud. Hands or objects near my head. I could fill a book with the mundane things that make me feel my head is going to burst. And then there are the parts of my being me that I feel embarrassed by…the misplaced keys, the forgotten grocery store items, the lost car in a parking lot, the sense of unfamiliarity when I drive places I’ve been to many times before.

My need to avoid these things can be overwhelming. Stay home, stick with my routine, construct a safe, quiet, emotionally neutral space and then lock the door from the inside. This is my default setting.

Fortunately, my wife makes a habit of dragging me out of my comfort zone, forcing me to do the things I most try to avoid. She refuses to concede the fact that “difficult” in any way means “impossible.” Quite the opposite. She schedules movies, dinner dates with neighbors and political get-togethers, insisting I not only show up but participate.

When did my expectations of myself get set so low? Why did I let my autism become an excuse for not trying, for not pushing myself? The answer is pretty obvious to me. I long ago chose habit, familiarity and safety in place of putting in the tough work needed to have a fuller, more rewarding existence for myself. I became fearful and stopped showing up for my life.

Every week now I go to our local Kiwanis meeting, where I volunteer to help, take on projects and literally force myself to sit at tables with other people. After-church coffee hour may seem like small potatoes to you, but it’s mountain climbing for me. Keeping an adult support group up and running is…well, emotionally bracing seems as good a description as any. My wife doesn’t make me do these things. I do, and am better for it.

Which brings me back to Lewis’ bus. However I choose to define being different, it can, if I’m not careful, become like a room I’m afraid to leave instead of what drives my journey toward something better. I believe it’s up to me.

All of us make choices…big and small…about how we choose to live our lives. Are we going to build a small room in a little house out of our fears, anxieties or, worse, other people’s opinions, and then hide inside…or are we going to start dismantling these emotional hiding places brick by brick and begin our journey?

I absolutely hate this process. It’s exhausting and beyond uncomfortable. It’s also the thing that gets me up in the morning and keeps me moving forward. I’m not stronger and most definitely not more resilient these days. I am, however, more determined.

It has taken me a while to realize that the scenery begins changing as soon as the bus leaves town. Life has a way of getting better as I go along, even if it can seem slow and painful at times. There’s more joy to be found in the journey and less reason to fret about the destination than I ever expected.

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3 Things to Know About Autism, From the Parent of a Child on the Spectrum

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“Make America great again” is a refrain that echoes through the collective American consciousness. I find myself wondering what will be the defining moment(s) or policies that will return America to her glory? How will we know when America is great, again? What does that look like, feel like, sound like?

President Trump spoke of empowering the American people in his inauguration speech, saying: “Today’s ceremony, however, has very special meaning. Because today we are not merely transferring power from one administration to another or from one party to another. But we are transferring power from Washington, D.C., and giving it back to you, the people.”

Does this mean that America will be great when the will of the people guides the policies that shape our national agenda?

Some pages of the White House website have been removed since President Trump was inaugurated, including the disability section. If the pages were simply being updated, what is the harm in leaving the old ones up until such a time the new information is available? Is part of making American great again, limiting access to information?

As a parent of a child with nonverbal autism, I am most concerned with what I believe to be his lack of understanding of autism. Throughout the course of his campaign and in the early days of his presidency, President Trump has made numerous mentions of autism that in my opinion reflect a lack of understanding of the disorder. I believe he is spreading misinformation that is perpetuating stereotypes and misnomers about autism.

These are a few things I’d like everyone to know about autism.

1. A popular quote in the autism community frequently attributed to Stephen Shore is, “If you know one person with autism, you know one person with autism.” Some people with autism live independent lives, whereas others require more support. Similarly, some people with autism face additional challenges like learning differences or medical co-conditions (GI problems, chronic insomnia). It is important to recognize that autism is a spectrum disorder and affects each person differently; therefore, one should take care not to make over-generalizations about what autism is and is not.

2. Autism diagnoses are increasing, but there can be many reasons for this. According to a CBS News article, “the CDC said the rapid increase was likely a product of the change in diagnosis and the expansion of what was considered part of the autism spectrum, in addition to unknown causes that research may yet uncover.” No one knows the exact the cause of autism; however, there is consensus among the medical community that immunizations are not the cause.

3. Autism can bring challenges, but it is also beautiful. I firmly believe my daughter would not the person she is, the person I love dearly, if she didn’t have autism.

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community.

Follow this journey on Kacie’s blog.

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How My Son on the Autism Spectrum Is Using His Voice in His Own Way

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My son Leo clutches his hands tightly beneath his chest, his gaze alternating between me and the television screen, his expression seems steadfast and intent on communicating.

His brain knows what he wants, yet he struggles to put words together to tell me.

“What do you want, baby?” I ask. “What movie?”

I prepare to run through his list of favorites, hoping I’ll stumble upon the film he’s seeking. I hope upon hearing the title he wants, he will try to imitate the sound using his sweet voice, or that I’ll be able to gauge from Leo’s visual cues which movie he wants to see.

Boy standing in living room in front of TV with the movie "Finding Dory" on

Before I can utter a sound, my boy, with fierce determination blurts out, “Nemo, fish, duck, Dory!”

“You want Dory?” I ask, my heart swelling with pride and a deep sense of affirmation that connections are being made.

While he might not know the title of his new favorite film, “Finding Dory,” Leo problem-solved. He used language he knows connected to the film to express what he wants.

He communicated.

“Nemo, fish, duck, Dory,” is currently Leo’s new go-to phrase for requesting the movie he adores — as is “Woody fly in the sky,” for “Toy Story,” and “Monster,” for “Monster’s Inc.” And just recently, we figured out that his requests for “House” was a request for the Pixar film, “Up.”

My boy, who has been described in many recent evaluations as primarily nonverbal, continues to prove what he is capable of.

By fostering, supporting and encouraging the things that bring him joy, his passions continue to be an avenue for progress and growth.

And just like Dory, Leo will do these things in his own time, and in his own unique and special way.

Follow this journey at Life With Leo.

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When My Son Asked, 'Mom, Do I Have a Disability?'

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I knew the question would come, in one form or another. I thought I was prepared. I’d read countless articles, met with therapists, had late night discussions with my husband. My search history is filled with variations of the question “How do I tell my child he has autism?” This type of preparation is not unique to parents of kids with special needs, although the topics may be. Eventually, as a responsible parent, you know you will have to have uncomfortable conversations with your kids. Unfortunately, mumbling awkwardly doesn’t satisfy when your child asks you an important, deep philosophical question in the drive-through line or as you’re drifting off to sleep. You don’t know exactly when the moment will come but you know it’s inevitable, so you prepare.

My moment came on a family vacation just over a year after my oldest son’s autism spectrum diagnosis. I had prepared for it. But I wasn’t prepared for it.

When I became a parent I knew I would face the big questions. Yet it’s not the sex talk that’s been on my mind (although that will come). For my husband the question hasn’t been if we tell our son he’s autistic, but when and how. These questions are individualized and unique to the family situation; I don’t intend for this post to be a piece of advice. I’m no expert; I’m just a mom navigating without a road map.

I remember my husband and I watching the show Parenthood when our oldest was a baby. One of the characters, a young boy named Max, is diagnosed with Asperger’s syndrome. Max’s well-meaning parents do not tell him about his diagnosis, although they do seek the help of a behavior aide. Eventually, Max overhears a heated conversation between his dad and uncle during which his diagnosis is revealed. Max is angry, confused, and devastated while his parents run major damage control. My husband and I rather sanctimoniously agreed that we “would never” keep something like that from our child. Turns out revealing this information isn’t so straightforward.

When our son was diagnosed, we felt it was important not to hide the diagnosis from him, as we didn’t ever want to make him feel like it was some kind of shameful secret. Again, our personal situation. The other edge of the sword? Our son also lives with anxiety disorder NOS. He is very sensitive and he cares what people think. He is self-conscious and perseverates. How would we tell him about his autism without him over-identifying with it? How would we keep him from feeling like something was “wrong” with him, while at the same time circumventing the trap of minimizing the very real difficulties he faces as a result of his autism?

The consensus of my research indicated that when a child begins asking questions or making observations about a topic, you know they are ready for an explanation. Obviously, the depth of the explanation will be adjusted based on the child’s age and developmental level. The rationale is that once a child is observant enough to begin asking questions, giving them an explanation is far better than leaving them to ruminate (and believe me, our child ruminates!) and come up with their own version of reality.

I first discovered this information when my research history contained variations of the question: “How to talk to kids about a parent’s depression?” Interestingly, when this question came up, (“Mommy why do you take that medicine every day? Why do you have to go to the doctor so often? Are you sick?”) I was surprised how readily my son accepted my explanation. While I thought was being discreet, he noticed the pill bottles on the counter and the frequent doctor appointments and worried I was sick. While it was not a conversation I ever wanted to have, I explained to him that yes, I am sick, but my sickness is in my brain so you can’t see it. But it’s OK, because my medicine helps me and I go to the doctor so often because he helps make sure my medicine is making me better. I think he said something like, “Oh, OK. Can I go play Minecraft now?”

So, when the day came, I figured I’d be prepared. It turns out some things you just can’t prepare for. Life is not an exam to be studied for. If only.

We were perusing the science museum in San Diego. My husband was with our youngest playing Legos while I trailed A and my niece through the genetics display. I was thinking about something important like where we were going to go for dinner when I noticed my son staring intently at a chart about genetic disorders. He was uncharacteristically quiet, and then he turned to me and said, “Mom, do I have a disability?”

I deflected. I asked him what he thought and why he asked that. That night during tuck in when most of our heart-to-heart discussions occur, I readdressed his question. I asked him what he’d meant earlier when he asked if he had a disability. He replied, “Well, I was just wondering, because you know how I’m different and stuff?”

Ah, yes. Different. He knows he’s different. He struggles with things other kids don’t. He notices things other kids don’t. Subtle social norms are often lost on him. And he knows it.

As badly as I wanted to appease him with some “different is not less” “be who you are” “we are all unique” platitudes, I knew his question was deeper than that. He’s deeper that that. The time had come. Except all preparation went out the window. There’s no script for this type of thing; there just isn’t. I took a deep breath and told him he had something called autism spectrum disorder. I asked if he knew what that was and he shook his head.

Now, the hard part. A label is one thing, but autism (like any condition) is more than a collection of traits or a generalized description. I told him it meant in some ways his brain works differently than a lot of other people. It means he has very special gifts like being able to remember things and being able to learn so many facts about things he is interested in. I told him it also means certain things can be harder for him, like doing something new, loud, noisy areas, or coping with surprises and changes in plans.

He nodded. I told him we would do everything we could to help him with the things that are more difficult, and continue to encourage him in the things that are strengths. I told him that the world needs people with all types of brains, and that we were proud of him and loved him just the way he was. He asked me if other people have autism, or is it just him? I said that many people have autism, in fact a few people he knows! We talked about other “disabilities.” He asked me if everyone has a disability. I said no, but everyone does have things they deal with that are hard for them, and often you can’t see it; that’s why it’s always important to be kind.

He yawned and rolled over, which is usually the signal that his mind is finally slowing down for sleep. I asked a question of my own. “How do you feel about learning you have autism?”

With his back still to me, he shrugged one shoulder in that eerie teenager-ish way of his. “I don’t really care. I mean, I don’t think it really matters.”

Out of the mouth of a 7-year-old. I couldn’t have said it better myself. In moments he was asleep and “the talk” was over. But I’m sure it’s not over. These talks evolve but don’t really end. At least I have a few years before the big sex talk, right. Right?

Follow this journey on Killing June Cleaver.

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Thinkstock photo by Digital Vision.

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Autism and Other Words That Begin With ‘A’ on This Journey

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My Sibling And My Pals Dolls Can Help Teach Siblings About Autism

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My Siblings and My Pals Dolls are 18-inch boy and girl dolls that can teach kids about having a sibling or friend on the autism spectrum.

Read the full transcript:

These Dolls Can Help Teach Siblings About Autism

My Sibling Dolls and My Pal Dolls teach kids about having a sibling or friend on the autism spectrum.

The dolls were created by Loretta Boronat, a special education teacher whose son is on the spectrum.

Each doll comes with a book featuring a story from the sibling’s perspective.

“We strive to teach children to accept, understand, respect and love their peers who learn and grow differently.” -Loretta Boronat

The doll company also provides job opportunities for people with disabilities through a sheltered workshop.

Jobs include grooming, dressing, styling and prepackaging the dolls.

The small family-run business also employs Boronat’s son, Danny, who has autism.

Boronat hopes to hire more people with disabilities as they grow.

To learn more, visit mysiblingdolls.com.

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