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I Am Not a Person With Autism. I Am Autistic.

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Some people believe the term “person with autism” is a more respectful way to describe people like me. But the truth is, I believe that phrase implies that autism is something bad.

There is nothing wrong with me. You may find me socially “unacceptable” from time to time or notice that my way of thinking is different from your own. But different does not equal broken. In fact, I wouldn’t ever choose to stop being an Aspie, even if I could.

Many people, myself included, believe that autism is genetic. I truly believe that neurodiversity is a necessary part of human evolution, and Aspies have been around throughout our existence. Great minds, such as Einstein, Mozart, and Tesla are now thought to have been on the spectrum.

Society has a bad habit of only wanting to focus on the negatives. Can you remember the last time you saw a happy story on the news? How often do your favorite shows get interrupted to bring you information about something positive?

Google-ing Autism brings up pages and pages of results. It takes considerable work to find information about positive parts of autism. Our gifts are hidden online and in the media, buried beneath challenges and drama. You don’t often read stories about adults who “pass” (with exhausting effort) in society.

Every time I stumble across articles talking about finding a “cure” for autism or isolating the “autism genes,” my frustration and worry rises. Don’t these people realize they are talking genocide and eugenics?

Stop trying to “cure” me. Stop trying to prevent others like me from being born. There is nothing wrong with me or my genes. Just support me, and help us succeed in this world. We deserve to live happily just as much as everyone else.

This is why I am not a person with autism. I am autistic and proud of it.

Please understand if I am irritated when people who aren’t autistic try to govern what is best for us. Many of us are capable of advocating for ourselves and do not need or want a “cure.”

Follow this journey on Anonymously Autistic.

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The Joy of Watching My Son With Sensory Sensitivities Enjoy a New Food

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My son N has always been a picky eater. No, scratch that. How about super-sensitive-and-guaranteed-to-refuse-any-new-foods? That’s a much better description.

It’s not just because he is on the autism spectrum. Part of it is probably the sensory defensiveness that can come under the autism umbrella and part of is it anxiety about new tastes and textures. I mean, this kid hasn’t eaten candy in his entire life! He couldn’t care less about ice cream or pizza!

I know, I know — he sounds like a 6-year-old who only eats healthy stuff. But this is way bigger than that. He accepts six foods, and those are the six food choices he’s been sticking to for the past four years. It’s a constant cycle of dosa-pasta-rice-pretzels-chips-fries. So no, not healthy by any means. And his dislike of non-preferred foods is so strong, he will actually gag at us eating a meal. It’s that hard for him. Eating at restaurants means taking his meal along with us, and he’s that one kid at the party who’s eating his little box of pretzels because he cannot stand the sight of birthday cake. Not fun for us and definitely not fun for him. And as he grows older and smarter, he now realizes how much control he has over what he puts in his mouth. New brand of pretzel? Not going to happen! Different flavor of the same chips? Ha ha you’re adorable, but nope with a side of nope.

When we were brand new to this, we did the whole “let him go hungry for a while and he’ll eat anything” routine. You can imagine how that ended. One hungry, screaming 2-year-old whose mouth was sealed shut until he saw us buckle and offer him some pretzels.

Since then we’ve tried many (smarter) ways to address this. Food chaining, offering him new foods all the time, smelling kit, using dry edibles for art projects, getting him to feed us, etc. Nothing has really worked sustainably. Some progress, but it is slow-going. And it really comes to bite us in the butt when he falls ill. He will absofreakinlutely not eat a pill or swallow a liquid medication. Once he was dehydrated after a virus and his pediatrician advised me to give him Gatorade and juice, and I laughed all the way home. Like, seriously, lady? Do you know nothing about my child after five years of seeing him? All I had to do was offer him Gatorade? Why did I not think of that before? Snort.

So that’s where we were until recently. You still with me? OK.

This past month, a bunch of his buddies had birthday parties at school. His teacher has been offering him bits of popcorn and chips (new brand) at every party, and color me incredulous when she reported that he licked a chip and a single piece of popped popcorn. I seriously did a comical double-take when she told me the news! On the drive home, I felt like rolling down the windows and yelling, “My kid licked a chip.” Might have gotten a few blank stares and some surprised ones, but that’s how ecstatic I was. And then this past week, he saw me snacking on some popcorn, so he walked over and watched me eat for a bit. I held my breath and tried to make it the world’s most interesting production of a person consuming popcorn. Sneaked a glance at him — he was still watching me.

Boy on bed, taking popcorn from someone's hand

Then yesterday, while I was going at the popcorn again (What? I like popcorn!), he actually put his hand in the bag and fished out a few pieces. I swooped in with the intensity of an eagle and asked him to lick one. And he did! Then at my urging, he put one in his mouth and swished it around a bit, grimacing the whole time. Spat it out, but didn’t gag! Cheering inwardly, I asked him to do it again, but he refused.

Later last evening, his Dad got him to do it again. And then — angels singing — he ate a piece of popped popcorn! And then another! Almost gagged, but the moment passed. I slept better last night than I have in ages.

And today, he ate popcorn almost casually. Twenty whole pieces of beautiful, fluffy popcorn. I counted out each one while his auntie handed it to him. We didn’t say a word, didn’t breathe too loudly. Just watched in awe as this 6-year-old boy ate and enjoyed his popcorn. We cried happy tears and hugged him while he smiled proudly. He knows what a big deal this is. He knows he’s been so brave to do this. And he knows it might get easier the next time.

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Navigating Our First Year of Marriage as Autistic Newlyweds

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Social interactions and making friends can be difficult for autistic children. Sometimes their parents worry about what this might mean for their future and whether they will have a happy life. To change the world’s view of autism, my husband Abraham and I opened up our wedding — and our lives — to the public. We want people to see that autistic individuals can have a need for love, relationships and marriage, just like others do. We want to show people the success of our marriage.

We demonstrate our capability of maintaining responsibilities, pushing ourselves beyond what we thought possible, and maintaining highly productive lives. We are not only living our own lives, but working diligently towards helping others on the autism spectrum as well.

We just celebrated our first wedding anniversary. We are two autistic individuals living a blissful, harmonious married life. People wonder about how we live our everyday lives.

Abraham and I both agree that our ability to communicate with each other is the key to a successful marriage. We share with each other our innermost thoughts and feelings. We talk endless times a day, and we love to sit and talk for hours on the weekend. Weather permitting, we’ll sit on a bale of hay outside by our horses and talk, or on a Saturday evening by the fireplace with a crackling fire and some hot chocolate. We consider our long talks just as intimate as making love. Our talks are what bonds us as soulmates and best friends.

We respect each other, nurture each other, watch out for each other, and take care of each other. It’s truly a beautiful relationship. And because we both never expected to find someone, we treasure our bond deeply. In our society, people have become so superficial, focused on how they look, what they’re wearing. Instead, we chose to focus on our character, our morals and our hearts.

We live a pure, simple, old-fashioned life. We don’t even have a TV. We gave it away. We cook from scratch, grow our own vegetables, and make homemade breads and even handcrafted soap. Our entertainment is obtained from nature, which gives us a sense of peace and comfort. It is the best therapy on earth.

We both have professional jobs that we work full time at each week. Abraham is an AutoCAD Draftsman at a large land surveying company. He has been doing this job over two years now, and he is doing senior level work. He can do the drawings at lightning speed. I have a 28-year career thus far as a Certified Registered Nurse Anesthetist. I’m in the operating room all day doing one case after another. We both use our laser-focus for our jobs. We’re quite exhausted at the end of the day, and there’s no time for cooking on weekdays. So each Saturday evening, we sit and plan our menu for the coming week.

We eat extremely healthy, and include fresh vegetables, fruits, nuts, chicken, salmon, and lots of salad greens. We assemble the grocery list to include everything needed. Sunday morning, we trek to the grocery store and get our food, typically necessitating two carts! Then once home and everything is put away, the cooking marathon begins.

We typically spend the next four hours prepping, cooking, and cleaning up. Our cooking time is, as Abraham calls it, our tranquil time together. There are frequent hugs and kisses, and also looking out the kitchen window at the variety of birds on the feeders that we keep well-filled. Once all the food is done, we put some in the refrigerator and some in the freezer.

Did I mention that we do everything together? Yes! We do things other couples often do, like attend baseball games, occasionally dine out on a Friday evening, have picnics, do things spontaneously, and enjoy each and every day.

We both like to keep the house spotlessly clean and organized. And because we both have symptoms of mitochondrial deficiency, maintaining enough sleep (eight to 10 hours) is critical to us. Because we get up at 3 a.m. each weekday, it literally means we get home from work, feed all of our animals, eat, shower, and go to bed.

Friday evening, Saturday and Sunday are my big writing days. I’m often at the computer 14 to 18 hours writing. I have the scheduled things I’m working on and frequently have requests from publishers or other media for something. I’m always Johnny-on-the-spot to write whatever is called for immediately. I’m also embarking on a new career as a motivational speaker, so in addition to preparing presentations for autism conferences, I’m writing presentations for other venues.

While I’m busy writing, Abraham enjoys keeping the house tidy, and being the handyman. After the week at work, he finds doing all of that as great therapy and very relaxing. On the weekends we spend more time with our horses, chickens, cats and dogs. Being outside on our farm is the best therapy on earth for us. We have a 10-acre farm, and it’s mostly woods and the rest pastures. We will often share a long, soulful hug under the trees, closing our eyes and listening to the wind in the trees and the birds singing their beautiful melodies. That’s our heaven. Abraham describes it that we can’t tell where one body ends and the other begins, as we’re like one soul united together. We live a simple life, and a very peaceful, harmonious one.

My Advice for Relationships and Marriage

Love is an abstract concept, and that can be particularly true for autistic individuals. It isn’t something you can see, but it is something you feel inside. It’s a feeling that brings peace, comfort and security. I describe it one step farther, that it feels like home. What I mean is that when a person comes home, you have a feeling of it being your sanctuary, your safe place, your comfort zone. That’s what it can feel like to be truly in love.

Communication is they key point to a successful relationship and marriage. You must be open and honest with your partner. You must be willing to share your weaknesses and innermost thoughts. Yes, this makes a person feel vulnerable. But in order to build the solid foundation for a relationship, these factors must exist.

Every human being has the need for acceptance, especially from their partner. Whatever their differences are, accept them and rejoice in them. Learn about them. Discover their likes, their passions, what makes them happy. Share those same things about yourself with them. Find similarities. This will provide avenues to share doing things together. The more you do and communicate together, the stronger your bond will grow.

Support each other. Listen to each other. Encourage each other. Be happy for each other.

Schedule time for romance! Create an atmosphere of romance to enhance the experience. Mood lighting such as a crackling fireplace or candles. (We use battery-operated candles that flicker and look real. We never have to worry about forgetting a real candle is burning!)

For relationships in which one person is on the autism spectrum and the other one isn’t, I highly suggest that the non-autistic partner learn all they can about autism. Do not expect the autistic person to conform to neurotypical standards! They cannot, and shouldn’t have to, change themselves. Embrace their differences. Understand the nuances of autism, and the special needs that can go with it. Understand our sensory issues. Accept a meltdown if it happens. Help figure out ways to lessen the autistic person’s sensory overload. Just don’t ever expect the autistic person to pretend to be something they’re not. Encourage them to be themselves!

Relationships and marriage are not to be taken lightly. They are serious commitments two people make with each other. I’ve seen the saying, “Your soulmate is the one who brings your life to life.” This has been very true for me.

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3 Gifts I Didn't Expect After My Daughter's Autism Diagnosis

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A week ago, I was getting ready for a follow-up visit with the developmental pediatrician, and to be honest, before last April I wasn’t all too sure what a developmental pediatrician did or was, but I was certain my family of seven didn’t need one. That was until I was ready to get real and acknowledge my youngest daughter was on the autism spectrum.

Seraphina was born on a blazing hot September evening. She flew into the world, letting us know life would never be the same. With four children at home and no clue as to what to expect, I was utterly shocked the next day as I slid her sweet newborn body into a pink outfit that let us know, “I’m the little sister.”

Our sweet Seraphina, who takes her name from the strongest of angels, would begin to show us the strength we needed to lead her in life — and the strength she had to show us the life that lay ahead of her. As an infant, Seraphina was perfect. Truly. There were a few cries, but when there was reason. She seemed to be developing typically, until one day I realized she had some quirks that raised a few flags and made me begin to wonder.

Fast-forward six months and many trying doctors’ appointments, and Seraphina was diagnosed with autism. We drove home, and as tears rolled down my cheeks I never imagined the things I would learn to be gifts after hearing the words “autism diagnosis.”

I have recognized three major gifts since learning of her diagnosis:

1. First, the world has slowed and allowed me to become more compassionate and understanding of others. What once seemed so important now seems so frivolous. I am a Type A mom who had to have the house in complete order, my kids had to do their best, and when in public we had to have a good showing. Now, when I see a parent struggling to manage a child during a meltdown, I understand. When my child comes up to cuddle me, I stop and take the time. For so many years, I spent my life trying to be seen as perfect when in reality I never was. Now, I realize my life is perfect. It’s just a different perfect than I imagined.

2. Second, I feel the significance of milestones so much more. I remember being so impressed with my 7-month-old when she learned to walk. To be honest, my kids didn’t have many issues with milestones, and I never understood other parents when they lamented over milestones not met — until I had Seraphina. Seraphina walked on time. She talked on time, but her autistic traits became more apparent nearing 18 months. So when we got eye contact, I beamed. And the first time I heard “I love you,” I cried. I came to appreciate the little milestones that used to seem like no big deal so much more.

3. Third, I have gained a new family. I remember my first trip to an autism support group. I hated it. On the drive home, I begged a friend to return my special needs parent membership card, but this card was now mine. Not for a month or a year, but for a lifetime. I no longer feel sorry for myself, but rather I’m grateful to surround myself with individuals walking a journey similar to my own. Yesterday, I reached out to a mom with an autistic child. I invited her for tea. This was totally out of my comfort zone, but having her here, I felt good. It felt safe to talk, and I knew she understood.

There are so many things we face in life that may cause us to feel sorry. This diagnosis is not one of them. I had to mourn the childhood I expected for my daughter, but releasing that only allowed me to open myself up to the gifts that come along with the diagnosis, too.

A version of this post originally appeared on Messy Blessy Momma.

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10 Things I Keep in My 'Toolkit' as an Autistic Person

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1. Noise-canceling headphones: for when I need to take a break from my surroundings. Sometimes I need to check out to avoid sensory overload or block out distractions so I can work and focus on other things.

2. Sunglasses: for light sensitivities. I try to stay in the shade when outdoors, but I need sunglasses even on rainy days (and sometimes indoors). I have special colored lenses to help with the florescent lights in stores and office.

3. Hats: Hats with brims are great to block out glaring lights. I also like hats that come down around my face on days I do not feel like looking at people or being looked at. On sensory days or when I am tired, I honestly don’t have the energy to socialize with strangers, so I don’t.

4. Something to fiddle with: if I need a break or distraction, I use a book, iPod, smart phone, or fidget toy such as a rubix cube. I always like have an audio book or music available (and headphones) when I need a break.

5. Hand wipes: If you have tactile sensitivities like I do, sticky hands will annoy you. It is nice to have something to clean up with. I recommend avoiding scented wipes or finding a smell you like.

6. A snack: I get fuzzy and agitated when I am hungry. I can’t think, and my sensory issues get worse. If you have a sensitive stomach or are sensitive to tastes and textures, it is good to have something with you that you can eat if you are venturing out for the day.

7. Something that smells good: My sense of smell is sensitive. Public bathrooms, household cleaners, chemicals, and air fresheners all make me queasy. I like to have good scented lotion or perfume (that smells like food or candy) in my bag to apply when I need to smell something pleasant and block out something obnoxious.

8. Gum/mints/candy: My stims are less obvious, possibly because I’ve turned to an oral fixation. I like to keep organic mints, candy, or gum in my bag. Personally, I cannot handle aspartame or artificial sweeteners as they aggravate my stomach. I tend to be more sensitive to any non-organic chemicals than most people.

9. Taking breaks: I’ve found it is better for me to step away for a quiet moment alone than to have a public meltdown or shutdown. Don’t be afraid to excuse yourself and step away to take a break if you need one.

10. Knowing my limits: I get a certain feeling that seems to increase as I get closer to a shutdown or meltdown. It normally starts with the lights getting brighter and sounds getting distorted. Next is a headache and general mind fuzziness. Pay attention to how you are feeling. Learn to recognize the signs that you are getting overwhelmed.

Remember everyone is different. Autism really is a spectrum. These are just some of the tools I use.

Follow this journey on Anonymously Autistic.

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When I Heard My Son on the Spectrum Was Ready to Graduate From His IEP

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I’ve written an entire series about the IEP experience…

From a parent perspective.

From a special education teacher perspective.

From a teacher perspective.

From a student perspective.

I knew it was coming.

This IEP was different. I asked Tucker if he wanted to come. At first he said no, and I was relieved. I know this might seem old school, but I like to have my own teacher time. Yes, my children should be responsible for their own learning and be able to communicate their learning and so on, I get it. Regardless, I like the one-on-one time with their teachers. I like to ask them honest questions and receive honest answers.

This time, he decided he wanted to know what it was all about.

He called my bluff. Damn.

It started with me being early and trying to hold it together. Then a small room. Then fidgeting. Then Tucker arrived, and I breathed a sigh of relief. He takes up pretty much the entire doorway, and his twinkling eyes, soft complexion and sweet smile reassured me it would all be OK. (Who’s the “real” adult in this situation?!)

We talked about the meeting. I told him how the meeting would be run. I told him he could leave if he became bored — but to do it politely and quietly. Then we practiced what “politely and quietly” looked like.

I always wanted to be an actress; he gives me that chance over and over and over again. Rehearsals for life.

Then the teachers arrived one by one. They all smiled. They all said “hello” to Tucker, and he nodded back.

They went around the table and all said wonderful things… Then the special education rep spoke the words I knew were coming: “He’s met all of his goals. He must graduate from his IEP.”

Tucker politely excused himself.

The teachers left.

Celebrate.

Panic.

Celebrate.

Panic.

Celebrate.

Panic.

Breathe.

Here I was in a room with his special education teacher, and I was speechless. I just stared at her and out the window and at the table and back at her. I took a deep breath and she finally said, “Nikki, he’ll be just fine, and if he’s not… you’ll know, and you’ll know just what to do.”

Then I sobbed. In that small room in Tucker’s middle school, I sobbed.

She came to the other side of the table and hugged me and said, “You know, I don’t get this moment very often. This is what is supposed to happen. I feel so lucky that I get to share it with you.”

Snot is now all over my sleeve, and mascara is running down my face.

I was able to mutter a “thank you.” Then she said, “You know, it’s your victory, too. You never let the frustration show. You advocated in the smartest of ways. You helped us understand so much about him. We are better because of you.”

That was not helpful to the existing snot situation.

I hugged her again and said, “We are all better because of him.” She agreed and ushered me out the door.

On the way out to my vehicle, I stopped and looked towards the heavens. Religious or not, this was a moment for praise and thanksgiving. As I climbed in my vehicle and drove away, I couldn’t help but think about all of these meetings. All of these meetings where I left in tears because I wanted life to be easier for him. They were over. In hindsight, they didn’t seem so bad. Funny how time really does heal.

I called my husband and had to pull over to tell him the news because I couldn’t talk. Half-way through my 25-minute drive to work, I had to stop again. It hit me.

How did he do this?

How did he keep up with the academics of his peers and have 27 (yes, 27) different goals in his first nine years of school? How did he do that?! It hadn’t occurred to me until that moment that he was not only working on speech and coordination and managing emotions — he was doing everything the other students were doing as well — math, science, literacy.

How did he spend time with speech language pathologists, occupational therapists, counselors, and physical therapists and still keep up?

Seriously, how did he do that?

When life settled down, that night I stood in front of my refrigerator staring at a picture of my brother. A picture that was taken after a horrible accident. A picture of him after he had overcome tremendous odds. A picture that was taken after my parents were told his chances of living were marginal.

I keep that 30-plus-year-old picture there as a reminder of the strength of the human spirit. I love that picture. As I turned around, there was Tucker, sitting at the table like every other night. But tonight, I was overcome with emotion.

There he is, sitting at my kitchen table — a very present reminder of the strength of the human spirit.

The tears were certainly present, but in the end a smile crept in. A smile that is evidence of a triumph. A smile of success. A smile that is reminiscent of the strength of the human spirit.

A smile because of Tucker.

Image via Thinkstock.

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