6 Challenges That Come With Being a ‘Passing Aspie’

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You probably know me.

At least, you’ve seen me around town. I look just like any other soccer mom, after all. I have matched clothes and cared-for hair, and I go with my soon-to-be-stepdaughter and fiancé shopping at the mall and to the movies like anyone else. I had affluent parents and a good education. I was quiet and shy but sweet and was in the chorus and the National Honor Society in high school. I went to college and got a job, gave polite smiles to my coworkers in the hall and maybe even chatted you up at a cocktail party. I had a marriage that sadly ended in divorce and survived it stoically. I am sure that you know me, or think you’ve met someone just like me.

But the truth is that you don’t really know me at all. Like millions of others, I have what is called an “invisible disability.” Invisible disabilities are those that one cannot see on the surface. Many intellectual and developmental disabilities (I/DD) fit into this category, such as learning disabilities, mild autism spectrum disorders like Asperger’s syndrome and mild cerebral palsy.

I’m a “Passing Aspie” – one of the ninjas of the invisible disability world. You have to know us fairly well to ever see our truth.

I coined the term “Passing Aspie” (short for Asperger’s). Asperger’s syndrome is a mild form of autism in which a person can speak clearly and has an average-to-devastating level of intelligence, but goes through life with social difficulties and often sensory issues. Even if you think you don’t personally know anyone on the autism spectrum, you have seen “The Big Bang Theory” and understand the portrait of Sheldon that is being painted there.

Passing Aspies are different. We are the people on the autism spectrum that you do not see wearing a visor to avoid fluorescent lights. We have learned to adapt, and honestly I doubt there are any accurate numbers on how many of us are out there because we rarely get formally diagnosed. That said, our inner brains and inner lives share autistic traits, and you cannot know our challenges unless we tell you. So today, in honor of Autism Awareness Month, I agreed to try.

1. Eyes and Excuses

More likely than not, you have noticed that people on the autism spectrum have difficulties with eye contact and visual recognition. I wasn’t diagnosed with Asperger’s as a child but I spent my childhood at war with my eyes. I have always been (and still am) visually unobservant and often use my other senses to compensate. I am nearsighted in the extreme but do not feel a need to wear glasses because my sensory world is still rich in so many other ways.

I spent my childhood with total face blindness, but I didn’t know what to call it. I never heard the term until I was old enough, through painstaking neural rewiring, to recognize at least the faces of those I saw frequently and the people I loved. (I still can’t recognize familiar actors in movies sometimes if they change their makeup or hair.) I learned to say the things that people expected to hear to explain why I couldn’t make friends in preschool. I was “bad with names” and couldn’t remember them. I was shy. Or I “didn’t need friends.” Or the “other kids didn’t like me.”

The truth was both more obvious and far scarier: I couldn’t recognize anyone. If I played with a little blonde girl on the playground one day, I had no way of ever finding her again. I had no words to explain this because I was unable to comprehend why this was. I just figured that other children were smarter and better at seeing visual cues. I would try to tell my mother, but I doubt she ever understood the whole truth. I am sure that other children thought I was snobby or weird for pretending like we had never played together before, and so I was lonely.

The eye problem most commonly associated with people on the spectrum is, of course, eye contact, and I have that problem, too. People always ask me why I can’t make eye contact. Actually, I can and do force myself to make at least brief eye contact with others as part of my passing act. But extended eye contact is emotionally painful if I am not truly intimate with you. The closest I can get to describing how it feels to me to meet someone’s eyes is to compare it to the feeling you would get if asked you to stare at a stranger’s naked body for several minutes. It feels embarrassing, awkward, invasive and socially wrong. I can hold my mom’s gaze or my fiancé’s (I do see him naked, after all), but socially it just feels embarrassing. So I let people think that I am just shy.

2. Sensory-Overload Pokerface

In many ways, the hardest part about dealing with Asperger’s both as a child and a passing adult is sensory overload. I use my ears to compensate for my eyes and am better at recognizing people’s voices than faces. I am also a great mimic with an audiographic memory. This came in great handy for school lectures or eavesdropping (I got away with this like you wouldn’t believe.). But there is a dark side to sensory sensitivity!

I cover my ears while during fireworks and was afraid of the hairdryer until I was 5 years old. My sense of taste was way over the top along with my sense of smell, causing sensory pain that most of you cannot even imagine. On hot days in enclosed spaces, I would feel that I was suffocating because I could smell the individual odors of every person in the room. All of those different smells mixing together would make me dizzy, but what could I do? I was aware enough to know that no one else could smell what I did and that no one would believe me.

I gag at the bitter taste in vegetables. Needless to say, adults weren’t buying my explanation and accused me of faking it. Fruits have very strong smells that overpowered me. For nutrition, I had to take vitamins and eat baby food well into the first grade. That ended after a friend told our whole class at school.

But these are only minor challenges compared to some of the invisible demons that come with my invisible disability.

3. Invisible Moat, Invisible Alligators

I have often been asked about the worst part of being on the spectrum. This is where the monsters come out. Sexual abuse is very common among people with intellectual and developmental disabilities (I/DD), three times more likely than for children without disabilities. When you realize that one in every five women is in the U.S. is sexually assaulted as a child, you can see that many people with invisible and visible disabilities alike might be sexually assaulted every day. I was no different.

I know you are wondering what kind of person would put their byline on an article that included this detail, and I will tell you. It’s a person determined to break the silence. I had many strikes against me when it came to getting help and healing for my abuse. Questions that parents normally ask children to get them to open up completely went over my head. I didn’t even understand that what I was forced to do was sexual abuse; I saw it as punishment and figured it was normal. And I lacked the courage and the words to confront any adult’s behavior as “wrong.”

I want to let you know that although it is difficult to know if a person with an invisible disability is being abused, it is not impossible. Look for signs and read between the lines. We are human, and we do feel pain. For example, a scared child who is at a loss for words and calls her babysitter “mean” may be trying to tell you something, especially if she doesn’t verbalize negativity often. You may also notice that under the stress of abuse, the invisible disabilities in your child multiply. From age 6 on, my self-esteem plummeted. I developed claustrophobic behaviors and panicked if I had to wash my hair under the shower. I also spent larger amounts of time alone in various hiding places around my home. In addition to my increasingly apparent post-traumatic stress disorder, I suddenly began suffering from obsessive-compulsive disorder, and began to behave erratically and suffer nightly insomnia. In another child, these would have been extreme warning signs, but because my behavior was somewhat odd to begin with, due to the autism, people let this go as more evidence of my disability.

4. Dragonslayer

So what I just described is a far cry from being a Passing Aspie, you say. Well, that took many years and a lot of hard work on my part. I focused hard on grounding techniques, which helped me to mentally stay in the room with my classmates and break out of my dissociations. I worked up the courage to make one or two close friends, and as I fought to memorize their faces, the fog in my neural pathways lifted, and I began to see other faces. I practiced friendly facial expressions in the mirror until they felt less awkward. I traded homework help for social comfort.

By high school, my hard work had begun to pay off. New neural pathways took over my brain, and being social began to feel more natural. When I cracked under the stress of completing an extra hard course load with obsessive-compulsive disorder and became clinically depressed, I was finally got the treatment and medication I needed. One of my psychiatrists even figured out that I was on the autism spectrum. It was too late to truly benefit from services at that point, but knowing that I had a real disability and wasn’t just defective as a person helped me to forgive myself. I am proud of the work I did to make my life come together.

I have never been more proud of myself than the day I earned my Masters degree in Social Work and walked across the stage at George Mason University. I held several jobs working in foster care placement, a homeless shelter, and a nursing home and am proud to say that I never once got singled out as an Aspie or told that my work was impacted by my disability.

5. Am I Magic?

I get asked about “special” talents often. People want to know if I can do magic tricks like multiplying large numbers in my head or know what day of the week November 12th, 2028 will be. The honest but disappointing answer is that I do have a savant talent, and I just told you all about it. Being a Passing Aspie is harder than it looks. I don’t have the genius of many on the spectrum, but being me requires conjuring more strength, endurance and effort than you know. I noticed that unlike a lot of people my age, who typically sleep seven to eight hours a night, I need nine or ten hours to feel rested. I believe that this is the extra energy that my brain uses to filter out the sensory distractions and social challenges so that I can pass successfully.

By the time you notice the horrible beeping noise coming from the microwave at McDonalds, it has been hurting my brain for five minutes or longer. I no longer hear it, however, because my mind subconsciously noticed this immediately, determined that it was enough to make me crazy, and filtered out the noise. Also, the energy it takes me to make casual conversation with acquaintances and make eye contact while doing it would rival what it takes nuerotypical people to give a high-level presentation at work. My trick is that you don’t see it.

6. What Do You Mean, I Lack Empathy?

My biggest complaint as a Passing Aspie is listening to people go on about how people with autism lack empathy. Excuse me, but says who? Isn’t what you really mean that people on the spectrum don’t understand how YOU are feeling??

The truth of the matter is though that you don’t understand how people on the spectrum feel any better than we understand you. More than half of the time, you don’t even spot me hiding in the crowd. Before you reject this theory, ask yourself if you could do what I do every day of my life and pass in a room full of people on the autism spectrum the way I pass among you. Didn’t think so!

I don’t want to criticize neurotypical people. It’s just insulting and hurtful me to hear that I am believed to lack empathy when my best savant talent has been to develop empathy at such a level, that I cannot only pass as neurotypical and live in your world but very often translate between people on the spectrum and people who are not and represent both with a startling degree of accuracy.

If you have read this far, I want to thank you for having the empathy to hear my words and relive my struggles with me. Please show this empathy to others with invisible disabilities and imagine them walking in very uncomfortable shoes. If you truly can’t do this with compassion, then please keep it to yourself and do not talk about what you think you know about my autistic brothers and sisters.

A longer version of this post originally appeared on United Cerebral Palsy.

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‘How Do You Do This Every Day and Not Get Pissed at God?’

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“How do you do this every day and not get pissed at God?”

This was the second question I was asked recently about parenting an autistic child.  This question I answered simply: “I am not mad at God because he is my son. I understand him to the best of my ability. I get to see what he struggles with every day and know that from his perspective things are SO different, that none of this is his fault and he was made by God to teach everyone in his life that he meets a lesson”

The truth is that this question is such a loaded one: How DO I do what I do every day and not get pissed at God?

Maybe I should start with the fact that I believe that everyone comes into our lives for a reason, no matter how quickly that point of contact might be. I believe that our children pick us before they are born because they have lessons to teach us.

If I were to be mad at God, would it be because my beautiful youngest son has autism?

What about the fact that my amazing oldest son has ADHD and SPD, was developmentally delayed, blind in one eye and suffered through combative panic attacks for the first four years of his life?

Should I be mad at God for having me be born into a situation where I will never know my biological parents? That I was then adopted into a family that would fall into the statistic of divorce a couple years later?

Maybe it should be for the interesting life I’ve lead… Dealing with my own ADHD, depression, anxiety, abusive relationships, addiction, cutting, being suicidal and only seeing only the worst in myself for years?

Should I be mad because the only love I thought I deserved for years was the love from a one-night stand because I felt that I wasn’t deserving? That I was broken and who could love that?

How about knowing what a psych ward looks like because I’ve had to go there a few times when I was an adolescent?

What about when I was told I would never have children, only to get pregnant and have a miscarriage that ripped my marriage apart?

I could be pissed at God for so many reasons! Really I could, but I’m not.

I am more spiritual than religious, to be honest. I believe that every twist and turn in my life was a lesson I needed to learn to get me where I am today. All of the chaos, sadness, guilt and pain I needed to learn what it felt like not to be “normal” and to grow into the unique, brazen person I am today.

Without my kids and their mold-breaking personalities that come with alphabet soup, I would be lost; my purpose would be non-existent. I would be a woman searching to find her passion and definitely would not be the best version of myself.

My son, Bubba, made me the person I am today. He helped me realize that whatever was thrown at me I could handle. I was stronger than I thought. He is the reason I stopped feeling like less than good enough. The persistence, courage and moxie he has helped me understand that my expectations of life and parenthood were wrong; I needed to look at our lives differently. He helped me find my voice and showed me what unconditional love is.

My other son, Beast, has shown me how to listen, really listen. He helps me slow down and break things down. He’s taught me that I need to let go of even more of my type-A personality. The patience that I have found within me is amazing. My intuitive nature is so much stronger and my attention for detail has been sharpened. He has shown me a whole new way to look at the world, that I need to let down my guard a little more, be more open to ask for help and that my tribe of crazy is shifting, but that’s OK. I have to make choices that are right for him, even though they go against my moral high ground.

So how do I do every day without being pissed at God?

I do it because they are my kids, my world, and without them, I would be lost.

meghan hanley kids the mighty

This post originally appeared on Finders Seekers.

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? If you’d like to participate, please send a blog post to [email protected]. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Want to Know What It’s Like to Go Out in Public When Your Child Uses a Wheelchair?

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Let’s say you have a clown baby.

Now, before I continue, let me be clear: I know this sounds crazy, but just go with me for a moment. Use your imagination. You can do it.

OK, like I said, you have a clown baby. By which I mean your baby is dressed like a clown. Your little bundle of joy is sporting a round red nose and a powder white face. The kid’s got a painted smile lacquered from ear to ear and a puffy red wig that would make Ronald McDonald green with envy. And then there are the shoes – don’t forget the shoes. Your clown baby has got big shoes. Long and floppy, bulbous and yellow. With neon pink laces for good measure.

Can you picture it? Can you feel the weight of this rainbow-colored darling in your arms?

Wonderful.

Now, imagine you’re walking through the mall with your clown baby toddling along beside you – maybe you’re holding hands or maybe you’ve got them on one of those baby-leashes (no judgment) or maybe you’re corralling the little rascal towards Starbucks so you can snag some caffeine before it’s time to go – when, suddenly, you raise your eyes and glance around. You see fellow shoppers moving to and fro. And what do you imagine they’re doing?

You see it don’t you?

They’re all watching your clown baby.

All of them.

Most of them are sneaky, stealing quick glances that bounce from you to your clown baby to the shop windows then back to your clown baby in a continuous loop. Some of them are shameless, grinning good-naturedly and nudging their companions saying, “Oh my goodness – do you see that?! So cute.” Children are the most dumbfounded, dragging behind their mothers, heads turned, jaws hanging slack. You’ve seen children stumble directly into oncoming pedestrians, solid walls and – on one occasion– a metal pole because their eyes were fixed on your clown baby rather than on the path before them (true story).  Groups of teenage girls are the loudest with their happy gasps and sitcom worthy “aww!”s. You once caught the entire Sbarro’s pizza line smiling and waving and discussing your clown baby together.

And at first you think, “My goodness – it’s like these people have never seen a baby dressed like a clown before!” But then you realize, they probably haven’t. They saw one on a poster once or on the news when the circus passed through town, but in real life? This is their first time. Of course they’re making a fuss. Can you blame them? For heaven’s sake, you have a clown baby.

Strangers stop to chat. “We’ve never seen such a well-dressed clown,” they say. “We didn’t even know they made clown noses that small!” 

“Seeing your clown baby just makes my day!”

“God bless you and your clown baby.”

“Your clown baby is something else. Just precious!”

You’ll nod and smile. You’ll small talk and wave. You’ll tell your clown baby to say hello. You might even enjoy it a little. That’s OK. I mean, if you think about it, are you really surprised? What did you expect? Is there anything cuter than a clown baby? They’re novel and different and surprising. They’ve got fantastic hair and flowers that squirt water. People certainly don’t see them every day.

Besides, no one is being cruel. Everyone is being positively dramatically spectacularly kind. Do their stares and smiles and comments make you angry? Of course not. 

But they do make you a bit, well… tired.

Because you quickly realize it’s not just your clown baby everyone is watching.

They’re watching you too.

They’re watching to see if you’re happy. They’re wondering if you’re sensitive about your clown baby or worn down by all the toil and hardship that goes into caring for a clown baby (they’ve heard that baby clown makeup takes a full hour to put on!). They’re taking their cues from you. They’re learning from you. And since this may be the only clown baby these people ever see, you feel immense pressure to convey to them the truth of your circumstances – to show them much of what they think they know about clown babies and the people who love them is wrong.

So you’re approachable. You’re open. You smile. 

Come to think of it, you haven’t frowned in public since your clown baby was born.

And sometimes that’s hard.

It’s hard because even though you just came here to return one ill-fitting pair of leggings and you’re frustrated because clown baby is swiping all the gosh darn sunglasses from the kiosk display and tossing them willy-nilly onto the floor and you’re this close to really losing your patience… you can’t show it.

Because you’re not invisible. You do not blend in. And you’re afraid if you reveal even a hint of discontent, all those strangers behind all those watchful eyes will think one thing:

“Well, of course she’s stressed. Not surprising, really. It can’t be easy… after all, look at that baby of hers.”

So you grin and you chat. You get your Starbucks while your clown baby tosses coins into the fountain.

And you hope your smile is making a difference, however small. So maybe, one day, when your clown baby is a clown adult, the world will be ready for all the wonderful things he will do.

In the circus.

Or wherever he wants to be.

I know this is completely ridiculous, but I was trying to explain to a friend what it’s like when we go out  and this is the best I could come up with. At first, I thought maybe I was imagining all this, but we’ve gone out with enough friends and family members to have the oddity of our situation confirmed over and over again. As my sister said “Wow — everyone is looking at us. It’s kind of… a lot.” Yes, it is.

So, what’s it like for you? If your child has visible differences, can you relate? Does anyone else find themselves constantly smiling in public because you know people are watching? How do you think all of this affects our kiddos? Does our response affect our kids? If you don’t have a child with a disability, what do you think when you see a family like ours out and about?

This post originally appeared on What Do You Do, Dear?

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What Happened When Everyone Turned Down Invites to a Girl With Special Needs’ Birthday Party

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Mackenzie Moretter just turned 10. The girl from Shakopee, Minnesota, has a rare genetic disorder called Sotos syndrome that has made it difficult for her to make friends at school, NBC News reported. Sotos syndrome is characterized by developmental delays and rapid growth in childhood.

Mackenzie was all set to celebrate her birthday on Saturday, but none of the people she invited accepted her invitation. Fearing her daughter would be devastated, Jenny Moretter, Mackenzie’s mother, posted a message on Facebook asking anyone and everyone to attend.

She hoped to get at least ten people, but around 300 showed up to wish Mackenzie a happy birthday. Attendees included Vikings football player Charles Johnson, someone dressed as Elsa from Frozen, the Shakopee Fire Department and more.

I have a hard time making friends in school,” Mackenzie told the crowd. “But thanks to all of you, my voice was heard.”

See more from Mackenzie’s party in the video below:

 

h/t Reddit Uplifting News

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Teen With Down Syndrome Gets His First Job and Has Priceless Reaction

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Ben Sunderman is a 19-year-old with Down syndrome from McKinney, Texas. Using a program called Project Search that helps young adults with disabilities find jobs after high school, Sunderman landed an internship at an Embassy Suites hotel in Frisco, Texas, ABC News reported.

When he gets his acceptance letter in the video below, he insists on reading the entire thing before celebrating. Then, when he gets to the end, his reaction is priceless.

I get it!” he says in the video. “I get a job!”

Watch the video below to share in Ben Sunderman’s joy:

 

h/t Reddit Uplifting News

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When Someone Said ‘I Felt Helpless’ About My Son’s Meltdown

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Today I was asked a question:

“What could I have done yesterday to help? I felt helpless.”

I cried when reading it; not completely sure why, but I did.

I was asked this question because of a meltdown that happened. Yesterday was a tough day, We were visiting family and the visit didn’t end well. I left frazzled, upset, overwhelmed and pissed. Upset because I am sure I hurt a few feelings as I walked out the door in the middle of dinner, overwhelmed thinking about everyone’s feelings but my child’s and pissed because it is now one more place we can’t go.

I do not expect you to put locks on all the cupboards, chains on all the doors you don’t want him to get into, fence in your yard so in case he bolts he is at least not able to go into the road or a neighbor’s pool, put away all valuables so he can’t break them, make sure anything that he could fixate on that could cause a meltdown is out of sight. I don’t expect my friends or family to take the same steps that we do in our home to keep my son, Beast, safe. That would be a ridiculous request and expectation.

I try to educate and talk about what our daily life is like so people might get a minor inkling of what our day is like. Not to say, “Hey, my life is so much harder than yours,” but for understanding and acceptance. The issue is that no one seems to “understand” it until they see the meltdown and are in the room, feeling the gut-wrenching pain, seeing the panic and frustration on his face.

All the little things added up yesterday. I saw everything that could be an issue in the house. I knew a meltdown was coming, I just wasn’t sure when or what it would be about.

My answer to the question is that there isn’t anything that I would ask anyone to do when he is that upset. I don’t want him getting hurt. I can handle being pushed, hit, having my hair pulled and being screamed at. I don’t want help restraining him, I don’t want anyone else trying to talk him down. It only makes it worse.

What I do expect, though, is understanding and patience if you want us to come to you.

Understanding that he is going to get into probably almost everything that he isn’t supposed to multiple times, that I am not going to sit for even a minute, that I am to be a little snappy, distant and have a deer-in-the-headlights look because I am waiting for it.

I want you to understand that yelling at him in this moment only makes it worse. He doesn’t hear your words; he only feels the emotion.

I ask for you to have the patience to give him space, not be in his face, to let him come to you when he is ready to be social. I ask you to wait when he gets stuck on something and he is frustrated that he can’t communicate his exact needs and starts pushing and shoving, swiping things off of shelves, emptying the freezer because he just wants you to hear him.

That is how you can help him. I don’t need help in that moment; he needs understanding.

A version of this post originally appeared on Finders Seekers.

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