What I Want You to Know About My Life on the Autism Spectrum

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My name is Alex, and I have autism.

They say my mind is extraordinary, that’s why I stand out. I never said a word until I was 12.

I’m learning how to live in a world where I don’t belong, and I say that because people like me aren’t usually accepted. When I finally did talk, everything else looked fine from the outside. So my biggest problem now is that people forget I’m on the spectrum, so they say and do things I either don’t understand or get stuck on because I can’t figure out what they mean.

I still can’t always look at people when they’re talking to me, but I’ve worked hard to get where I am with eye contact. I still have meltdowns, and I still shut people out, but it doesn’t happen as often as it once did.

I learn in black and white, that’s all I know. I don’t know body language, and I can’t read facial expressions. I also have sensory processing disorder. Most materials that aren’t cotton feel like knives or fire on my skin. I don’t like to pet things, and I don’t like fur.

On a good day, most of the time you wouldn’t be able to tell I am autistic, unless you knew what to look for.

alex with a bunny

I know what I want, I just don’t always know how to say it. I don’t always use my words. There are days where I don’t talk at all, and those are the days where I shut people out.

I graduated high school this year, but I barely made it out alive. I have no confidence or self-esteem. High school never taught me how to love myself or how to fit in.

I’m obsessed with cars. If I know you, I know what you drive. It only takes seeing someone get out of their car one time to know what they drive, and I will remember it… forever. I know most people’s license plate numbers without even trying to. I have to be careful not to look because otherwise I would know every plate on the road.

I want people to know that just because someone may look completely fine, doesn’t mean they are.

So be kind, always.

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In the Mind of a Man on the Autism Spectrum

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Here is what my autism looks like…

Selfishness, self-centeredness, self-involvement.

I am an ice king, I move through the world like a young Vulcan moves through a human city, stoic, solid and apparently untouched.

I am the arrogant one, the annoying one, the one most likely to hijack a thread or a conversation and to loop whatever you’re talking about back to me.

I am the reclusive, the introverted, the loner.

I am the third seat bassoonist in the symphony of society, always unsure of the rhythm, eternally out of key. I fade in and out with varying levels of skill, I play my three notes and then retreat to a safe distance, watching, waiting to see if I am going to be accepted or if I have brought the music to a crashing halt and a scolding is imminent.

My lack of rhythm is ironic in that I tick to my own beat, tic-ing in various ways, some so subtle as not to be noted, others so loud that Oppenheimer would wince at my explosions.

I am both creator and destroyer of worlds.

Some of us swim in oceans of art, in seas of words, in colors more vibrant than a Van Gogh hallucination; others wrap ourselves in ourselves. I take my butterflies inside to play.

They say I feel nothing. Frequently I feel too much. I love too hard, I take a conversation into fragments, diagramming and re-diagramming and seeking that one tiny flaw and beating myself with it, long and hard, until days, weeks, months, years later I take out the much battered sentences and show them to the person I spoke the words to and they wonder what I am thinking of. Them. I am thinking of them. And they, well, they think about me, so science says, for about 17 seconds on average.

Or it, I am thinking about it. The “Black Beauty” steam trains of India and the narrow gauge rails that crisscross the country starting in the far north near Nepal, moving south to the sea. I think about the signals and the whistle stops, and the whistle itself, smooth barrel of high pressure sound trapped within it’s tempered tolerances, smooth walls, quiet until the conductor pulls the chain and breaks the pipe, cracks it open. Do you not know about trains? Let me tell you about trains. Steam trains, electric trains, maglev trains, let me tell you again, and again, and eternally…

I do not live in barren white expanses, I decorate the walls of my mind, but I rarely, oh so very rarely, let you in.

And when I do – feel blessed.

This is what my autism is.

Sensorum in flood tides. Information in Force 12 winds.

I hear your words. Oh, yes, I hear them. And the squeak of your chair, and the rustle of your shirt, and the man chewing at table two, and the woman farting at table 10, and the little boy who wants to go home “now please?” and the glass-packed muffler on the street rod outside, and, oh, wait, is that a train?

There is so much data, so much to fill each second. So much that it hurts. It claws at me. It reaves my inner walls and makes me look for psychological plywood to batten down my hatches.

And sometimes it is too much.

You say to me, “My words are more important than your trains. My words are more important than your words. Be nice. Don’t hit. Obey the rules. Smile. Laugh at my jokes. Remember this, remember that. This is important!”

And you drown me in your words.

And so I melt down.

On the best of days I take myself home and I rest. I read quietly or think about the trains in the Punjab.

I wonder why your words are so important, I wonder why the fork goes on the right. I wonder why you want to shake my hands, see my eyes. These things are arbitrary things. Not like Watt’s steam engine, not like pipes, and condensers, and metal stresses. Trains are real. Trains are concrete.

Manners are just more rules, and what are rules, words and what are words, sounds.

Social conventions. Mass hallucinations. Subject to change and flux and, God help me, fashion. Different from country to country, heck, from town to town. All strains on some theme for social groupings.

Not for me.

But I want to please you. I want to fit in. I want to learn. I want to love and to be loved… and so I study. I think. I memorize. I adapt. (Yes, we can do that. ) I take lessons. I do therapy.

I train.

But it is hard.

I recover slowly. I run out of spoons. Be patient with me.

After all I am being patient with you.

Image via Thinkstock.

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4 Ways I Cope With Depression as a Person on the Autism Spectrum

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I have a confession. My life is a paradox. On one hand, public speaking is my profession. I enjoy my job. I feel I have both a calling and a gift to do it. Then there is the side of me that doesn’t like to talk at all. I’m terrified of meeting new people, socializing in large crowds and carrying on small talk. I’m often lost on what to say and when to say it. I’m completely uncomfortable in strange places with strange people. Sometimes, I won’t even leave my home.

I live with this daily, and I’ve learned to accept these two different sides of my personality even when others can’t seem to understand it.

Silence and solitude are at times my greatest assets. It’s not uncommon for me to go hours or sometimes a complete day without speaking. Learning to be comfortable with silence has helped me to become a focused thinker in order to process the world around me in a safe space. Silence is how I handle my sensory processing issues. Yes, there are times that I don’t talk a lot, but I need my moments of solitude in order to stay strong.

Then there are those seasons when silence and solitude are my biggest liabilities. Being comfortable with silence can be just as much a curse as it can be a gift. There are moments when my inclination to stay quiet and alone become the source of my struggles instead of the source of my strength. Sometimes my silence leaves so many stories left untold and unresolved.

One of the most devastating consequences of living with this constant contradiction is the role of depression. Silence ceases to be an asset when I’m unaware or unable to speak out about the secrets of my silent struggle. My story is a story that includes an ongoing struggle with periods of depression.

As a teenager and college student, my desperation to be included, mixed with my natural desire to remain in solitude, created routine periods of depression that led to years of self-medicating through drugs and alcohol. 

As a recently diagnosed adult, I’ve learned the language to describe my struggle, however, there are thousands, if not millions, of teenagers and young adults who are unable to articulate these feelings of despair. This post is for them and the people who love them, so here are just a few tips that I have found helpful in managing my moments of depression:

1. Understand the “norm.”

Every person on the spectrum is different, so reducing their behavior to a standard set of practices is usually not helpful. Instead, understand what normal behavior looks like for them. People on the spectrum also have personalities and likes and dislikes just like everyone else. Try to focus on when they began to show changes in their personalities and moods.

2. Recognize the ripples.

When I’m in a season of depression, the most accurate image I can use to describe it is quicksand. Quicksand can be dangerous, but it doesn’t have to be deadly. One of the primary ways to avoid it all together is to look for ripples in the ground as you walk. Ripples indicate that the ground ahead is unstable.

When managing my life on the spectrum, I’ve learned to do my best to watch out for unstable ground. Excessive changes in routine and/or social interaction can be emotionally, mentally and spiritually draining for me. It also increases the chances of me going into a depressive state. I’m not always good at recognizing when I’m in danger of stepping into the quicksand, so I try to have trusted friends and family who can help me recognize the ripples before I start sinking.

3. Pursue professional help.

When I was much younger I didn’t realize the weight of depression. I didn’t know I was autistic and also didn’t grow up in a culture that talked much about mental health. The result was I turned to drugs and alcohol as teen and young adult in order to self medicate.

I now have an extremely high view and value for seeking professional help. I see my therapist (who also diagnosed me with Asperger’s syndrome) at least once a month since my diagnosis almost two years ago. At this time, my depression doesn’t require medication, however, there are situations that may require the use of medication, and I recommend seeing a professional who can help you make those decisions for yourself or your loved one.

4. Respect the need for rest.

People on the spectrum don’t experience meltdowns or shutdowns because they are underwhelmed. Those moments, along with periods of depression, are usually the result of being overwhelmed. I have recently observed that my extraordinary ability to focus on tasks can, at times, cause me to go long periods without resting.

When I speak of rest, I am speaking about more than just sleep, which is needed. I’m talking about the rest of the mind and spirit. For me, rest is spiritual, so my faith plays a large role in how I manage my moments of depression. I encourage you or the person you love to find an activity that helps the soul to rest.

Depression on the spectrum can feel like walking in quicksand. The harder you try to get
out of it by yourself, the worse it feels, but I’ve learned that learning to speak up is the best way to get help when you need it the most.

My hope is you will learn there are times when it’s OK to speak up and allow others to help pull you out.

You are not alone. 

Imagine someone Googling how to help you cope with your (or a loved one’s) diagnosis. Write the article you’d want them to find. If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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What to Do When You Witness a Child 'Misbehaving' in Public

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My daughter had several loud, long drawn out meltdowns at the store today. Multiple adults stared, several made comments (“You are being ridiculous.), none of which helped me, my daughter or her siblings. They only added to her meltdowns and our sense of helplessness. My daughter happens to be on the autism spectrum and was having an unusually sensitive kind of day. It wasn’t any of these adults’ jobs to recognize autism, although my initial anger and frustration boiled from their lack of empathy of the fact that she was clearly struggling. I wanted to point out, “Hey, she has autism, cut us a break.”

Later, as I went on a therapeutic run, a plea grew in my mind, and I want to share it with you:

If you see a child in the store or any public arena having a meltdown, please have empathy. The child may be autistic, bipolar, hungry, tired. The child may be going through the loss of a loved one or struggling with bullies. In your short observation of the child’s behavior, you aren’t able to see what is under the surface, what triggered the behavior.

I think you are trying to be helpful when you offer advice and correction, but please realize your 10 seconds of “parental” correction is anything but helpful. The parent who is with the child has been parenting them for years. Your transient attempt at correcting   another adult’s child will only succeed at further frustrating and hurting a family clearly at its max. The child is not going to miraculously respond to your correction and say, “You are right, I am behaving ridiculously, I’ll straighten out now, just for you.” (If only it were so easy.) And trust me, that parent is not going to go home and say, “Wow, if only I told my child their behavior was ridiculous more often, they might be better behaved.”

If you truly desire to be helpful instead of just unkind (I’ll give you the benefit of the doubt), please don’t offer advice, correction or opinions about the child’s behavior. It will only add to the stress of that family’s day.

What you can offer:

Graciously allow them to go in front of you in the checkout line.

Offer them a gentle knowing smile.

Offer to help them empty their cart or offer to carry their groceries.

If you can’t offer anything, please just ignore them. Trust me, the inconvenience and interruption the meltdown caused to your day is far less than what it caused for them and their family. Please remember, you never know why the child is having a meltdown. Please don’t judge.

mom and two daughters in the car

This goes beyond meltdowns in grocery stores. The world would be a much kinder place if we all took a moment to think before we speak and if we gave people the benefit of the doubt instead of judging harshly. You never know what others are going through or struggling with.

Kindness, love, mercy, empathy, patience, and understanding. Practice these things, and you could change lives, including your own. You will find yourself with far more peace than if you spend your life judging, angry, and unsympathetic. Everyone wins… including this autism mom just trying to get groceries and her autistic daughter struggling to understand the world and wondering why strangers are being so mean to her.

Top photo via Thinkstock.

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When a Man at the Convenience Store Told Me Not to Say My Grandson Is Autistic

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Today was one of the rare occasions I got to bring my grandson Noah to therapy. His mom is always the one to do it. I usually stay at home with him unless we go to the grocery store or some other little errand. He will sit in a basket and look at all the lights and colors just like all little kids his age. He loves the grocery store — and Lowes. He really likes Lowes. I don’t know why that’s his favorite, but he loves it. Maybe it’s the high ceilings or the tall shelves or maybe even the smell. It smells like outside, and he loves outside. Whatever the reason, he’s very quiet there. His body stays calm and his eyes are wide and bright. I could stay there all day and not hear a word from him. 

Because he’s so quiet and because he’s still so young, nobody really realizes or sees his differences yet. If they ask him his name, I answer. It usually goes something like this:

Random person: “Hey little man. What’s your name?”

Me: “His name is Noah.”

Random Person, still looking at Noah: “How old are you Noah?”

Me: “He’s almost 2!”

Then, they turn their attention back to me, assuming he’s just shy. This has worked pretty well so far. There has never been any need to explain to said random person that Noah is on the autism spectrum.

But today was different. And the response kind of surprised me. 

We were on our way to therapy when I had to make a stop at a small convenience store. I took Noah in with me, got what I needed, and went up to the register. 

He was hanging on my hip with his little hand playing with the hair on the back of my neck, twirling it between his little chubby fingers. I love it when he does that.

noah playing with his grandma's hair

While I checked out, a nice, older man behind the counter looked at Noah and said, “Hey little dude… what’s your name?”

Noah, of course, completely ignored him and looked over my shoulder to check out this store he had never been in before. I gave the man the obligatory response: “His name is Noah.”

This man obviously wanted to interact with Noah so he touched him on the leg and said, “Hi Noah.” 

Noah couldn’t have cared less. The man wouldn’t give up though. He kept tapping his little leg and saying his name, so I tried to get Noah to acknowledge him by saying, “Tell him hi, Noah.”

The man behind the counter looked at me curiously. It looked like he wanted answers. “Why won’t he talk?” he seemed to say. Of course, he didn’t actually say it, but his eyes were asking, “Why won’t he look at me?” Normally, I would have told myself it was all in my head and just politely left with a little chuckle as if to say, “Kids… you know how they are,” but this time, I stopped and thought about it. Maybe I could tell him.

I’d been thinking about the fact that the time would come, one day, to have some sort of explanation for his behavior. That time could be now. Not that this guy deserved an explanation, but he was nice enough. Plus, the store was empty except for me and him. 

I could consider this a practice run. 

So without really thinking about what to say or what words to use, I said, “He’s autistic. He doesn’t talk yet, but he’s getting there.” *Big happy grin.* 

The response this sentence received was a little unexpected.

His eyes softened, his eyebrows furrowed, his gaze dropped and he looked right at me and said, “Oh, don’t say that. My son didn’t talk till he was 3 years old. Noah is just taking his time. You’ll see.. ” with another little pat on Noah’s ankle. 

At this point, I could have politely left this little store and the nice gentleman inside. I’m sure he meant no harm. He thought he was helping. I could have just said “Oh, you’re right. I’m sure he’ll be just fine.” But I didn’t. Something rose up in me that was so unexpected, it surprised me. It wasn’t anger. It wasn’t aggravation. It was a sudden awareness that he didn’t know what autism was. He thought I was telling him my grandson was somehow broken. That he needed to be fixed. Like I thought he was subpar and I was calling him a name. Autistic. He didn’t understand. 

I decided to “inform” this man about autism. I made it my duty, right then and there in that tiny little convenience store. He needed to know the truth.

I told him it was more than just his speech — it was his eye contact and how he gets overwhelmed easily and how he doesn’t really acknowledge people he doesn’t know. I was spewing, in a very polite way, facts about autism that I had read about for the past year. 

1 in 68 children…

It’s hard for him to make conversation…

Social issues…

He’s really smart and knows his ABC’s…

Einstein was believed to be autistic…

By the end of my little lesson, there were a couple of customers behind me and a look of confusion on this nice man’s face. He just smiled at me and said, “Early steps came to my house once a week for a while, and now my son is fine. Maybe you could try that.”

Well… that was a failure. 

He didn’t get it at all! 

I left there feeling a little defeated, like I hadn’t done my job. I was supposed to be an advocate for Noah. I’m supposed to inform people about autism, right? 

Maybe not like that though. 

The thing is, I want people to get to know Noah. Not “the kid with autism.” It would be nice if everyone understood why he does the things he does, but I want them to know him beyond that too. 

I want them to know how he loves to snuggle with his G-Paw at night in his big chair. 

I want them to know taking him outside gets the biggest laughs from him. 

I want them to know how bubbles make him squeal with delight and how when he’s tired he runs around the living room in an endless loop, screaming with joy, just before he passes out from exhaustion. 

He’s such a happy little boy. 

I want the world to know him

How do I do that?

I don’t know. 

Not yet. 

But I’m working on it. 

In the meantime, I should probably stay away from that convenience store. 

A version of this post first appeared on G-Maw and Noah.

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Why I'm Coming Out of the Asperger's Closet

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My brother chose the night of my high school graduation to come out to our father, who had raised us after the divorce. I was the younger child, and the black sheep to my brother’s shining sun; the day had finally been about me. After the speeches (I’d given one), and the interminable procession, we’d been allowed to go out for Mexican, which counted as exotic fare in our small town as late as the summer of ’84, something my father usually wouldn’t tolerate — the food along with the people. We’d come home and were having one of our long “family talks” around the dining room table, the kind where my father ranted for hours, full of black Irish emotion and passionate philosophy, weaving the story of his life with ours, or his version of it.

We can tell each other anything, he said. We share our truths. I wasn’t sharing mine, not any of them. I was sitting quietly listening, enmeshed in the family dynamic that was built more on myth than fact. Into this fiction my brother intruded his truth, that he was gay, that he had always been gay, that he had been experimenting while away that year at college. He was ready to own it. I had known since we hit puberty, and I was glad, relieved, that he had decided to come out. Coming out is never easy. But his timing was terrible. My night of celebration turned into a trauma.

My father’s agony was real. One of his two adult best friends, my Uncle Dick, was a gay man who had been murdered in a hate crime years before — pulled from his car after his windshield had been hit with a brick and assaulted until he fell into a coma; he later died of his injuries. They had never spoken of Uncle Dick’s same-sex attraction, and, my father said, that had made their friendship possible. With this unwelcome truth out now between my father and his son, something unspeakable had been said. Something that wasn’t shared even between men like brothers, certainly not between father and son. He believed it doomed his son to death. It put an insurmountable barrier between them. On every level, it literally and without exaggeration terrified him.

Therefore, on the night of my high school graduation, my father somehow found the God he had rejected so that he could punish my brother with Him. In the years that came after, they continued to struggle. My brother argued that my father should accept him completely, and my father argued that he never would. He could love my brother, but not that part of him. He knew my brother, but could never know all of him. At their closest moment during those after years, my father even helped to move my brother and his lover into their new place out of state. But the uneasy truce wasn’t bound to last. During that move, they got into a terrible fight over something incidental, like who was unpacking slower or driving too fast to follow. My father raced home, afraid my brother was going to use the spare key to our childhood home to get into the house and kill him. He changed the locks. They haven’t spoken again, as far as I know.

My coming out has been different and much less traumatic than my brother’s, but it, too, carries a gift and a price. I’m not talking about coming out with an alternative sexuality, but with an alternative identity just the same: disclosing to people that I have autism.

If I were a gay man, people would be more inclined to believe me when I told them so. With Asperger’s, a common reaction is skepticism. The person I’m telling has a relative or a friend who is a classic autistic. I don’t fit that stereotype. I’m verbal and don’t sit on the floor rocking, although if I stand long enough I rotate, or swing my torso, from side to side — something we call stimming. Or, they think of the socially incapable uber-nerd who is male, but here I am, a woman. I seem to have social graces; seeming is believing. I can make eye contact — admittedly, too much. I can make small talk — but not often or for long. Or, they just flat out believe that Aspies are unicorns, invented out of some bizarre inclination toward wish fulfillment, maybe a desire to be special, to find a label for introversion or eccentricity that has a certain clinical ring to it, as if by making such a claim virgins will want to ride us and the forest of twilit dreams will be ours and ours alone to roam.

Sometimes, when people do believe, even then they might express that it’s not a big deal. They’ve got friends who are geeky-nerdy-introverted-techy-socially-awkward-brainy people – maybe even on the shy side. I’m not shy, I tell them. I’m not reticent. I’m what they call “active but odd.” Hang around me long enough, or do away with one of the many interactive scripts I’ve learned to run, and prepare to be — well, it depends on your tastes and maybe my mood. Charmed. Stumped. Annoyed. Amused. Uncomfortable. There’s a range of reaction depending on our chemistry. And it’s not that I enjoy rejection or that I’m impervious to it, but I care much less about it than a socially normative person might. I’ve got rigidities. Obsessions and collections — a hoard in the skull. Sensitivities to stimuli. Imagine a cat with its back up, making that Halloween cat face of alarm. I’ve got one of those inside my nervous system, ready to jerk upright just behind my face at any given moment. It happened today in a meeting, when someone dropped something with a crash. I jump and grimace. Twitching, I have to concentrate to resettle. Literally, the surface of my skin stings all over — arms, legs, chest.

I’m different, and finally someone sees. One day, not long ago, a woman at my new job was teasing me. She’d found me sitting alone in a meeting room, waiting for the thing to begin. I always try to be on time, or a little before, and I do it even in a place where people have a culture of running a little late. They’ve told me they run late there. But it doesn’t matter to me. I have developed an internal standard that punctuality is polite, and therefore I do it regardless of others’ social expectations. So she is teasing me, saying that I must be so lonely, so very lonely, sitting there all alone in my aloneness. Party of one. Loner.

I’m reminded of that scene in the Steve Martin movie “The Lonely Guy” where he sits down in a restaurant to eat alone, feels self-conscious, and the universe fantastically manifests his self-consciousness as a spotlight shining down only on him. But I am not lonely. I don’t care that I am the only one in the room. I have plenty to think about, and I often bring something to read, anyway, just in case I run out of interesting thoughts. I tell her, to stop her from interrupting my thoughts and emoting at me in that too loud, cheerful-neighbor-over-the-fence voice, that I am not at all lonely, and I don’t get lonely, not in the way she means. I don’t generally long for other people. I only ever miss particular other people, and then only sometimes, not always. There was something in the way I asserted this that made her pause. She understood, I could tell, that there was something new in the room with her, something she wasn’t used to encountering in the daily course of her life.

Glimpses like that into another person’s awareness of my difference are validating. Not because I want to be different, but because I am different from most people. I can’t help but be keenly aware of this in my every interaction with strangers or people of limited acquaintance. It doesn’t make me an object of pity to myself. I am not a victim. I am not necessarily Aspie proud, either. It is what I am; it’s not something I’ve achieved. The moment when I move from self-awareness to advocacy is the moment when I sense someone has recognized my difference and rejected it. That someone might not realize he or she is rejecting autism.

I seem like something they recognize, except there’s something else about me that’s too remote, or blunt, or analytical, or serious, or intense. I’m staring at nothing with an unfocused gaze, or my interest in manifesting fake cheer has dwindled, as it does all too easily and often. They recognize a distasteful difference, without getting all the way to giving it a label. And if I gave that kind of person a label to explain it, would it render me more palatable to them? Or would they believe instead that there is some kind of medication to help me conform, or therapy that could fix me?

Not long ago, a woman to whom I’d revealed my autism made that very suggestion, that there must be some kind of therapy. Yes, Aspies sometimes benefit from social skills training or motor skills development or cognitive behavioral therapy for anxiety. Some of us take medication to help with anxiety or depression. But the fact is, whether others believe us, accept us, or reject us, as Lady Gaga would say, baby, we’re born this way. We’re freaks and geeks.

Just as with my brother’s experience in coming out, however, the most important reaction to difference is one’s own. It has taken me years to understand myself as someone with Asperger’s, to accept that Asperger’s is a form of autism, and even to acknowledge that it may put me at a disadvantage in certain contexts, despite my intelligence, ability, and confidence. And lately, I’ve been coming to a different place still.

These days, my autism is seeming less like private information, something I can only confess about my son in order to help him gain support services at school. We have a lot of positive talk in our home about what it means to be Aspie; we’ve come to admire the gifts, laugh at the quirks, and shrug at the deficits. So maybe there is some real value in coming out – not as much to the neurotypical world in the hope that we’ll eventually gain understanding and acceptance, although that’s something to try for, but so we can embrace one another and come to a greater understanding and acceptance of ourselves.

The Mighty is asking the following: What is a part of your or a loved one’s disease, disability or mental illness that no one is aware of? Why is it time to start talking about it? Check out our Submit a Story page for more about our submission guidelines.

 

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