Egrets wading in the sea at sunset

When You're a Bird in a World Made for Fishes

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When I found out a few years ago that I was on the autistic spectrum, it was a huge relief. It made so much of my life suddenly make sense. My “shoddy” school behavior and difficulty with monotonous jobs was all attributed to ADD. The social awkwardness I could never get over? Totally autism! Still, for the most part, the discovery was a novelty. I figured that I’d just go along with my life like I always had, and maybe being aware of my quirks and weirdnesses from a different angle would give me more power over them.

Well, I was a little right, but not quite enough. Actually, nowhere near enough. I mean, I was able to identify my quirks as relating to my neuro-atypical-ness, but it’s taken even more to figure out the difference between what made me “me” and what was an affectation that I’d developed for getting on in the world.

See, when you don’t know that you’re an autie and you feel separated and different from other people, you try to hide it, compensate for it. After all, why can’t you stay interested in regular subjects or sports? Why don’t you like the things everyone else likes? Why can’t you pay attention? What can’t you just suck it up and be like everyone else? What the hell is wrong with you?!

You try to act like other people do, you try to blend in with their weird little social rituals. You try to understand why they do what they do from their perspective, ideally, but you can’t necessarily relate to why they do what they do. You do your best to mimic them and go through the motions, and you can pass as them for a little while, but it’s hard. Like, really hard.

Hard maybe isn’t the most accurate word, though. Maybe that’s part of it, but more accurately, it’s exhausting.

Birds and Fish

Imagine being a bird in a world of fishes. You’re on the shore, and you’re supposed to go to school (heh) with them, and you’re supposed to get on with them, but you’re still a bird. But, it’s what you’re supposed to do. So, you dive in, hold your breath, do your best to make friends. After a while, you can’t hold your breath anymore. You have to come up for air, to get back to your own element. Your fish friends and lovers sometimes get pissed off because you leave them suddenly. Some understand, or at least accept, that you literally cannot help it. You have to breathe, for f*ck’s sake.

Some auties learn to get through this by holding their breath for a really, really long time – unnaturally long, even – and then when they have to come up for air, it’s a huge explosion of flailing and gasping. Others work out ways to only spend a little time hanging out with the fishes and then hiding on the shore so that no one realizes they’re not in the water all the time.

Me, I kinda want some SCUBA gear, I think that would work best, but I also want to have permission to not be in the water all the time. SCUBA gear would make it so that I could be comfortable hanging out with my fish friends. I wouldn’t have to think about how the f*ck to breathe when I’m around them after more than a few minutes.

Another big problem is that the world is made for fishes, so a lot of the mapping and processes that we’re taught in school and for work only apply to fishes and to the life underwater. When you’re a bird, you can’t use the aquatic navigation methods to get around the sky. And because no one teaches bird-type things as a regular course of life; most of us are on our own trying to sort it out.

And that means that when we do finally find each other, we’re often just as confused as everyone else as to what it takes to get on in the world. And then it’s even more complicated because there’s more variation in birds than in fish, it seems, so what works for a sparrow isn’t going to work for an ostrich or a hawk. We have to take bigger and bigger perspectives of the world in order to make any kinds of real general statements about our condition.

So, that’s how it feels when we’re trying to get on in the world. It sucks a lot. We’re all in unmapped territories, trying to find our way. It’s difficult living with fish-things, but in general, we like fish. We like hanging out with them and making friends with them and sometimes even being lovers and getting married and having biish or fiirds or whatever they end up being. We want to try to get along with them.

We just can’t be the only ones making an effort.

The Glass Wall

There are lots of different types of birds/auties, and it really seems that no two are the same. There are general characteristics, of course, that get mixed and matched together into every one, but sometimes that’s just presentation. What works to help control the less desirable behaviors in one might not work in another. This makes ideas like therapy really touchy, especially when words like therapy come out as synonymous with “because there’s something wrong with you.” Our greatest commonality is that we are fully human, and we want to be treated as such.

For all that any general statement is hard to make about auties, there are some commonalities I’ve observed. I’m not saying this is true for every last person on the spectrum, but it does seem to be holding up a great deal to scrutiny. (Your input, gentle reader, is encouraged.)

Specifically, we auties are behind the Glass Wall. For some of us like my nonverbal son, that wall is super-thick and full of occlusions. He can’t communicate effectively or regularly from his inside world, and he can only sometimes make out what’s being told to him from the outside. He does have a brilliant and vivid world going on in there, clearly, but good luck finding out what it is past the wall.

And then there are those of us who have thinner walls, but we still have occlusions. That glass acts as a fun-house-mirror type lens. We tend to take things super-literally, for instance, because we can’t always “see” body language to indicate a joke or sarcasm. We miss critical cues that tell us whether or not someone is a threat. If we tend to underplay threats, one bad experience makes us doubt all future experiences that might look kind of like that one bad time. We have a hard time discerning the factors and variables of interactions because the world is written in fish-language, which will never be our native tongue, no matter how much we study it.

Some parts of the wall become telescopic lenses, and these are our fixations — our “one thing.” This One Thing can become the Most Important Thing. It could be how the towels are folded (one of my big ones) or how the pencils are aligned or putting all the little cars in a row or only eating the vowels out of the Alphabits cereal. It could be texture issues, touch issues, certain types of sounds, control of our bodies… any of these things become so much bigger than what neurotypical people experience. We’re not being “overly sensitive,” we’re seriously experiencing this Thing more than they are.

Just to make things a little more “fun,” the thicknesses of the walls change with many factors. Food sensitivities, hormonal cycles, extended forced social interaction, money problems, relationship issues, and pretty much any kind of stress you can imagine will thicken that wall. False ideas that we fixate on in anxious states start to color the world. Everything is a threat, everything is bad, everything is dangerous. Our fixations are bigger than anything else, so much that we don’t know they’re false in that moment. Any other time, sure, we’re logical people, but when we’re stressed out and melting down? Nah.

Some of us have meltdowns and literally table-flip. Some of us shut down into deep depressions. Some of us run away, some of us lock up behind an impenetrable wall of blank, but almost always, there’s a neurotypical person looking at us in confusion, trying to figure out what the big deal is.

What to Do, What to Do

It would be super if we could start building a world that was equally suitable for fish and birds. Some of the things that birds really need to feel comfortable would make the world a better place in general, and fish definitely seem to benefit.

For instance, because we are so literal minded, we often also have an intense sense of fairness and rightness. If we are taught that the Rule is This, but then people start behaving like That, and no one gets called out about it, this creates enormous anxiety. What’s even worse is when we are taught the Rule is This, and we act according to This to the best of our ability, but then we’re reprimanded for it.

Justice and fairness are big deals.

We like true things, we like things we can trust. We like transparency and for topics to be fully explored and explained. We like knowing all there is on a subject, digging in deep to something we love and finding out everything we can about it, and we like sharing that knowledge with others.

We have needs, just like neurotypical people, but what confounds us a lot is how often neurotypical people don’t seem to pay attention to their own needs. Our perspective makes our needs loud and impossible to ignore, but that doesn’t make them less than yours. Your alarms are quieter, I think.

Maybe if you fish could make room for us birds in the world, we birds could teach you fish how to take better care of yourselves. And given our love for you in general, we’d probably help take care of you, too.

It’s only fair.

Follow this journey on Normfac.

Image via Thinkstock Images

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We Cannot Continue to Overlook the Suicide Rate of Autistic Adults

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That moment when your wonderful little boy lays his head, heavy with sorrow that is not his to carry, on your shoulder and breathes out such a sigh that you can hear the shattered pieces of his heart collide with your skin…

“Mommy, I think my brain is broken sometimes.”

Oh what I’d give to make him understand that it’s not he that is broken, but the world that cannot look past the word “autism.” What I’d give to show him how I see him, how his family and friends see him, how God sees him.

Meltdowns are no easy thing. Last night’s lasted almost two hours before he fell, exhausted, into a heap on the couch. Still sapped from that, he was subdued today and when we cuddled at bedtime, reflective. Having finally processed what happened, he came to the conclusion that he was broken… that the tsunami of emotion was the result of some defect inherent within him.Folks, this is what autism can look like.

It’s not just what you see in “Rain Man” or comedy sketches that exaggerate stereotypes. It’s the quiet, isolated deterioration of one’s self-worth as a child recognizes their neurological differences. It’s the internalized disgust masquerading as teen angst. It’s the displaced adult who has gone through life never being truly appreciated for their incredibly unique intellect and creative capacity.

There’s a reason those with autism are statistically more likely to attempt suicide than those without. People on the spectrum have a mortality rate almost two decades less than those without an autism diagnosis. As noted by the Karolinska Institute when they published in the “British Journal of Psychiatry,” the leading cause of premature death in autistic adults isn’t due to things like heart disease or cancer; it’s suicide.

This fact has largely been ignored in the fight for autism awareness and acceptance. As a community, we’ve made such strides in acceptance of children with autism, but those children grow into adults, and there tends to be a drastic shift in accepting autism in children vs. autism in adults.

One day, the beautiful little boy you see below will be an adult, and he will be an adult with autism. I wonder if the society that politely smiles as he stims at 7 will afford him the same compassion when he’s 25. I wonder if the folks who give me a gentle nod of understanding as he’s having a meltdown today will reach out as he experiences over-stimulation after a stressful work day at 32.

MIGHTY PARTNER RESOURCES

mom and son smiling

Given the statistics, I am not filled with confidence. However, autism and suicide do not have to be such heartbreaking bedfellows, and this statistic has inspired me to continue working towards better awareness and acceptance for those with autism.

So with September being Suicide Prevention Month, let’s commit to preventing the senseless, heartbreaking deaths of individuals with autism who are struggling to find acceptance, love and support beyond childhood. Reach out to those in your community, and share what you know in the hopes of breeding just a little more compassion and a little more understanding. Together, we can give my son and others like him a brighter, more accepting tomorrow.

If you or someone you know needs help, visit our suicide prevention resources page.
If you need support right now, call the Suicide Prevention Lifeline at 1-800-273-8255.

Image via Thinkstock.

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What I’ve Learned in 9 Years of First Days With My Son on the Autism Spectrum

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Today my son Jackson enters middle school, and I am looking back on nine years of excitement and butterflies, hugs and goodbyes, smiles and waves. Both his, and mine.

I am feeling all of the feelings: excitement, joy and wonder, but also anxiety, worry and doubt. Today, my son will continue down his own journey toward independence. I am beyond proud of him for all he has accomplished. All that he has disproved and all the barriers he has crashed along the way.

It has been a bumpy road, with twists, turns and unforeseen obstacles, but he has emerged out of elementary school a smart, strong, funny boy with the world at his fingertips.

Jackson started preschool at 2 1/2 years old. At the time, we knew he was precocious and curious. We knew he had a great sense of humor. We knew he was a little hard to wrangle, but we didn’t really worry. When he started preschool, the school had a speech therapist do quick 10-minute evaluations on the children. She detected something. I called her and she said she wanted to see him ASAP. I was put off by her demeanor.

We called Early Intervention. They came out and evaluated him. They recommended speech and occupational therapy several times a week. My mind spun. My heart broke. But there was no time for that. It seemed like every moment without action being taken was time lost.

We brought in a private speech therapist to work with Jack at home. She mentioned the phrase “PDD” and told me to look it up. She left. I did.

PDD – Pervasive Development Disorder. Autism.

I was shocked initially, but every day since then, I have not wallowed or sunk. I have forged ahead getting my boy what he needed.

He went to a new preschool that was better equipped to teach him. It was a school that happened to be a good fit. It was 20 minutes away, where the kids knew each other. He did not have the luxury to go to school with his neighbors in his community.

MIGHTY PARTNER RESOURCES

We tried attending the district’s special needs preschool. It was not a good fit. Jackson was happier in his other school. We stuck with that for the next two years.

He went to speech and OT twice a week for two and a half years. His therapists became my comrades.

He started kindergarten in public elementary school. He, and I, barely knew anyone. He was fine. I worried. I had no idea what lay ahead.

I’ve learned more in the past six years that Jackson has been in public school than I think I have in most of my life. I’ve learned what it’s like to have to fight. To not be able to trust the people whose job it is supposed to be to help. I had no idea then that the system would seem deliberately made hard to navigate. That I would have to rely on friends who had experienced it with their own children to tell me how to travel down this road. That there are things no one tells you ahead of time. That there are things available, if you know where to look, who to ask and how to get them.

I’ve learned what it means to advocate for someone. To fight, and put yourself on the line for another person.

I’ve learned that I had more to talk about with my son’s teachers than I did with some of my friends. I’ve learned that teachers have the capability to do great things. That they can be great allies and advocates for their students. Some truly are heroes.

I’ve learned sometimes it’s better to refrain than speak when it comes to conversations about parenting. That worse than feeling excluded, is to feel pitied. Friends mean well but don’t always know what to say. And that’s OK. And some just don’t, can’t understand where we are coming from. And that is OK, too. They have their journey, and I have mine.

I’ve learned that empathy was a lost art and not something every child understands. Some children think inclusion means to tolerate. It does not. Some parents think that is enough as well. It is not. I’ve learned that we still have a ways to go in that department, but there is still time, and there is hope. And there is mostly kindness.

I’ve learned that my son liked to be with other children, and as long as they were in close proximity, he seemed happy.

I’ve learned that there is kindness out there, but you have to know where to look for it.

I’ve learned that my son is a beacon. He is hope, and he is kindness and he is love.

I’ve learned when your children are riddled with anxiety, and you are too, you must practice what you preach. You must also be mindful, count to 10, breathe, and take a moment.

I’ve wished I were a speech therapist, an occupational therapist, a psychologist and a social worker some days. I’ve wished I knew more to help my son.

I’ve learned the phrase, “Different, not less” and had to remind myself of it time and time again.

I’ve learned I am human but still hold myself to a high set of expectations. I still like to be in control, and I’ll never be content with myself. I wish I could change this. I do not want my children to feel this same pressure I put on myself every day, so I need to find the balance between pushing and challenging myself, and knowing it’s OK to make mistakes. That we learn from mistakes. And to not be ashamed of those mistakes.

I’ve learned that to move forward in this world, we can’t worry about what others think. Although we must accept and respect others’ opinions, we do not have to accept them as our own. But, to move forward means to make progress, and we must allow ourselves to grow, excel, strive and not become complacent.

I’ve learned that no matter how hard I advocate for my child, he will be his own best advocate. By putting himself out in the world and experiencing it. By allowing others to be influenced by him, and for him to allow them influence him, too (when appropriate, of course).

I’ve learned I am not alone, even though it feels like I am sometimes (OK, a lot of the time). I’ve learned that help is a phone call away, usually involving a bottle of wine and maybe some sushi.

I’ve learned to find perfection in imperfect moments.

I’ve learned that life doesn’t turn out like we think it will, and that it is way easier just to go with it rather than fight it, even though that is often hard to do.

I’ve learned to love. Unconditionally. To throw away expectations and rewrite your story.

So, today, as I pile in the car the boy and the girl who’ve brought me all of this knowledge, I reflect back on these nine years of first days. I load up the backpacks and lunch boxes and I send my boy off to the next phase of his journey. His life may be more difficult, but I believe will learn freedom and independence, and to advocate for himself. I will be forced through the procedures and rules that exist to take a step back and let him figure it out for himself. I hope he will be OK. I hope he will be happy. I hope he will understand why he has to do it on his own, learn for himself now. I hope he knows that although I may not be able to help him all the time, I am still here for him, and I always will be.

His future’s so bright, he’s gotta wear shades.

Follow this journey on My Special Boy.

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She Wanted to Be Good

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That rule-following little girl, she really wanted to be good.

She wanted to be able to eat all the food on her plate, even though the textures made her gag. She wanted not to shudder and press her ears to each shoulder in turn, every time you scraped your plate and it made that sound that sets off her reflex hallucinations and makes everything taste of bile.

She wasn’t trying to be difficult when she was given the patterned-metal knife and fork that made her cringe and cower. She wasn’t trying to put off eating. She tried to be good when she wasn’t allowed to change them, her knuckles white from pressing her fingers as hard as she could into the pattern, so that she couldn’t feel it anymore. Anything better than that overload of sensory information, like nails on chalkboard.

She learned to offer to set the table so that she could have the smooth ones. She learned that was being good. But sometimes teasing led to swapping the bad ones for the smooth ones. They didn’t know. They didn’t know it was real pain. There was no one to appeal to.

She didn’t want to disappoint you. She didn’t want to fall apart because we were running late and she couldn’t make that make sense.

She didn’t want to have to refuse to hug that person, but it hurt and she didn’t want that either.

She didn’t want to melt down so completely that she had no control at all. She didn’t like it either. It scared her and always got her in trouble.

She didn’t want to be wriggling because the seams in her socks were like iron bars pressing into her toes.

She didn’t want to panic when she lost her stim toy. She didn’t want to need it. She knew it was babyish and shameful.

She didn’t want you thinking she was prickly and sullen all the time. She wasn’t trying to be those things, she just couldn’t project her feelings right.

When you told everyone she was lazy and didn’t revise for her exams, she couldn’t explain why she found revision so hard. She didn’t know what executive function was.

MIGHTY PARTNER RESOURCES

When her back hurt, that was because she couldn’t keep on top of which books she’d need on which day, so she took everything always. Added to her hypermobility, it all hurt. She wasn’t after attention. She wanted to stop hurting.

When she freaked out, but should have grown out of it by then, that was her brain being unable to process the constant sensory and social bombardment.

When she overreacted to new things, that was her natural reaction. That will always be her reaction, but she’s found ways of dealing with it. Of hiding it and preparing for it.

She really wanted to be good. She really did. She knows she’s not who you would have chosen. She couldn’t be that person.

She didn’t understand why other people found being good so easy. They must all have the same problems as her. She was just naughtier, blunter, louder, grumpier, worse in so very many ways. She must be lazy and unlikeable, she must be, because all the evidence was there.

Almost all of it.

I watch that girl from a distance. There’s no one to blame. It’s not anyone’s fault that she is in pain and cannot see who she is. It’s not the fault of those around her that they don’t question for a moment that perhaps she functions differently to them. They don’t know what to look for.

To a degree we all assume everyone else thinks like us; the difference is that most people are right.

Being understood, in body language and motive, is vital to understanding who you are and how you fit into the world.

I wish I could tell that little girl that it’s all real, that the pain and exhaustion she feels, other people aren’t struggling with, that she’s not alone.

But that girl is long gone. She’s already been through stage after stage of getting it wrong. And worse, when she learns how to simulate doing it right (as imperfect as that will be) she will go on exhausting herself and berating herself for years to come.

The story doesn’t have a happy ending, because the story hasn’t ended. But now there is happiness. Lots of it, intermingled with regrets and if-onlys, but it’s there and I intend to keep it.

There is great value in knowing who you are. But there is a stigma to autism which makes people reluctant to apply that label, reluctant to give that value and understanding. All because some people don’t understand what it means.

Awareness is the first step. Acceptance is the second. The third is normalizing. Now there’s an ambiguous word, normalizing.

By that I mean we get to a stage where being neurodiverse is not a notable thing. It’s not interesting or fascinating, because everyone knows what it is and has a neurodiverse friend. Where we are all “out and proud” at work and at home. Where adjustments are routine. Where those who have sensory issues, but no diagnosis, are also able to access more comfortable environments.

No us and them, just us. Everyone. Now wouldn’t that be a happy ending?

Follow this journey on Autism and Expectations.

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How My Autism Affects Sex, and How Sex Affects My Autism

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Let me start out by saying that for the longest time I didn’t really understand sex or anything attached to it, like flirting and being hit on. That’s not to say I’m completely unaware of how any of those work or why, or that I find it useless at all. Our country’s culture is steeped in and permeated with sex and sexuality. It’s easier for me to see the overall effects on people. I’m blind to it all when it comes to myself – when it’s blatantly obvious, I get it; when it’s subtle, I’m oblivious.

I was the girl in middle school who, upon everyone hitting puberty, didn’t get why all of my peers were pining over actors, musicians, and boybands, or even our fellow male classmates. I didn’t have that natural reaction. Sure, I liked a couple of boys I went to school with, but the drive, admiration, and lust that came with puberty flew right over me.

In my early 20s and college, that started to catch up, though I still felt very new and fresh to it, much like someone starting at a new school halfway through their education. They know the basic structure but are still trying to make sense of the new bearings and shifts in a similar yet alien environment. I constantly felt like I was behind everyone else my age, especially the women. I also was never one to deeply identify with my femininity. Like many others on the spectrum, I wax and wane with how much I connect with my gender. Sometimes it’s more natural, sometimes not. The same can be said for sexuality and its expression. I find that for many on the spectrum it’s more fluid in multiple ways.

Flirting: Unless I’m the one initiating, it feels awkward to me. Growing up, learning social cues and behavior from various support professionals and therapies never included dating and relationships in any capacity whatsoever. It’s something I learned as I went. If another person initiates flirting, depending on their style, technique, and tactics I either: freeze up and question their motives, think they’re just being nice, or it goes completely over my head and I don’t even recognize it happened. (If I had a dollar for every time I thought someone was simply being nice when in actuality they were trying to flirt with me… well, I’d at least be able to treat myself and a friend or two to dinner.)

MIGHTY PARTNER RESOURCES

Sex: Dating and having an intimate relationship means it’s inevitably going to come up. None of us as humans know what our preferences are in any regards until we explore and experience things. As we start, develop, and maintain relationships we learn those preferences, as well as how the mental, emotional, and physical beliefs and interactions of sex reflect back onto and influence us. We are all creatures who derive satisfaction from and continuously seek out anything that feels good to us. Individuals on the spectrum are not exempt. I crave intimacy because regardless of what I may have, it’s still a natural instinct. Like flirting, if I initiate sex I’m better able to control the sensory reactions that sometimes come up for me.

Participating in flirting and sex calls us to be present in those moments. With autism it means I’m constantly analyzing it. It’s automatic and subconscious. I actually have to tell myself somewhere in my brain to stop, loosen up the rigidity, and just feel and go with the flow.

Regardless of these variances, taking part in intimate and sexual experiences allows me to learn more about my comforts, identities, boundaries, and abilities. Depending where I am at on any given day in my mental, emotional, physical, energetic, and sensory capacities, experiences can be more of a challenge (whether knowing it could be beforehand or finding out as we go), yet there are just as many times, if not more, where I am able to gently push the autism comfort zone every time. By coaxing the boundary to lightly stretch, I not only allow myself to connect with, know, and understand myself better, but it creates an opportunity to do the same with my partner. Eventually this evolves to practicing deeper intimacy with family and friends, and creating a depth of relationship with others overall that previously has always been difficult for me to maintain or handle.

My autism affects sex in a multitude of ways, but far more, sex transforms my autism. As someone who continuously wants to learn exactly what they’re capable of in various ways, I fully and gratefully embrace the learning experiences it gives. Reaching out, feeling, and experiencing can be hard, but the multitude of treasures has been and continues to be far worth it.

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When People Didn’t Believe My Autism Diagnosis at the Age of 63

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My autism diagnosis is still fairly new. This doesn’t mean that I’m new at being autistic. It just means I now have a label and a framework for understanding why I move through life the way I do.

There have been lots of ups and downs over the past six months since my final meeting with the psychologist. The best moments involved learning why I’m different from others in ways that, in the past, left me feeling hurt and alone. Just knowing it’s not my fault has been a source of tremendous healing for me. I know that many people fear finding out they might be autistic. I’m only sorry it took me so long.

Some things have not gone so well. Telling friends and family is at the top of this list. Not the telling part. This has been pretty easy for me, perhaps too easy at times. What’s been surprisingly difficult has been convincing people it’s true when I’ve told them I’m autistic.

That’s not true. You can’t be.

Oh, my neighbor has an autistic son and you’re not at all like him.

Who told you that? Did you self-diagnose?

I never would have guessed.

I get this. Most people don’t understand autism affects people in a broad range of ways or what passes for social awkwardness or shyness might be something else entirely. Mention autism to them and they think of a child or adult dealing with very significant challenges. They don’t expect to see it in the people around them, and as a result, they don’t see it at all.

It’s no surprise they also don’t understand how hard we work to fit in, to find and keep jobs, to make friends, to navigate all the little tasks that make up a “normal” day, to not feel depressed or rejected when these things are difficult, exhausting or simply impossible.

I learned early on what it means to be different. Kids don’t invite you to play. Bullies single you out. Your one friend at lunchtime is the book you brought from home. Parents and adults withhold approval and, at times, love when you don’t measure up to their expectations or embarrass them.  

MIGHTY PARTNER RESOURCES

I did my best to avoid others physically and emotionally when I was growing up. Stayed home when possible. Ran away when it hurt. Was silent and invisible.

By the time I got to college, I was quiet, solitary and depressed, constantly at risk of a meltdown. Everything was a challenge for me. I just couldn’t think or be like the people around me.

My work life after college was more of the same. Very high-performance skills, very poor interpersonal ones. Every day felt like I was teetering on the edge of a cliff as I fought to mask over my differences with long work hours and determined over achievement.

I never felt I could show my real self to anyone. Instead, I faked normal every waking hour with everyone I knew. It became so habitual that the real me quite literally ended up hiding in plain sight. Small wonder it was so hard for others to believe I’m autistic. They had no idea who I really was.

So here I am, 63 years old, trying to introduce myself to friends and family for the first time. I’ve been forward about sharing my diagnosis when I thought it was the key to having a close, honest relationship with someone.

Since my trying to explain anything verbally is a one-way ticket to an endless, disconnected monologue, I’ve written a few follow-up emails to friends who didn’t accept or believe. This actually gave me the chance to focus on how I’m different, on what it means from a practical standpoint and then to put it into words. It may have taken a couple of back and forth emails, but almost everyone has ended up saying thanks for sharing this, I get it now.

Out of all the people I’ve told, only one has made a point of refusing to believe. It’s a bridge he won’t cross and, on a very basic level, feels too much to me like the rejection I experienced as a child. Friendship, like love, should be built on acceptance, not on expectations.

My relationships with other friends and family are works in progress. Yes, they now get it and may be on the lookout for some of the ways in which my being autistic expresses itself. I’m also much more open about being me around them, even when my proverbial kettle is on the boil and I just can’t resist rocking up and down on the balls of my feet. It’s taken me a while, but I finally understand that the only way to truly feel accepted is to know that people are seeing the real me.

C.S. Lewis wrote that the gates of hell are locked on the inside. This was true my whole life before I was diagnosed. It’s not true anymore.

Follow this journey on Lost Words.

Lead photo source: Thinkstock Images

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