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When People Say I'm 'Obsessed' With My Autism

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“You’re obsessed with your autism. Ever since your diagnosis, you talk about it all the time. You never spoke about these problems before.”

Keep in mind, none of these people know about my blog. Imagine how “obsessed” they might think I was if they knew I had an autism blog and contribute to a popular disability website.

I want to help. People should not have to struggle in silence.

I never know what to say in face-to-face conversations with friends and loved ones who doubt. Finally, after years of struggling in silence, I am talking — speaking up and trying to speak out. Face-to-face, my words have a hard time finding their way out.

My entire life, I was “sick.” Doctors could not find anything physically wrong with me. They told my mother it was all in my head and I needed to toughen up.

Finally, I have an answer — the truth, and it feels liberating.

As a child, I was tired of being looked at like I was “crazy” and told I complained too much — so I stopped complaining. Nobody believed me anyway. Just because I stopped talking about my discomfort does not mean it went away.

I still lived with constant headaches, nausea and even physical pain — the more severe symptoms of my sensory processing disorder. Before, I would endure, pretending everything was alright, smiling through the pain.

“You used to be such a positive person.”

It seems now that I advocate for myself and speak up when I am uncomfortable or not feeling well, I am a “negative person.”

Why does this stigma still exist? I’m not trying to be negative, I’m sharing my world with you or asking for help. But it seems to me few people want to know how I am really feeling.

People have accused me of using my diagnosis to get out of things, but really the things I try to get away from now are things that have caused me pain my entire life.

In my experience, people can be downright nasty when I try to paint autism in a positive light. They seem to feel as if I am dismissing the struggle, but I feel like there is already enough information on the internet talking about all the challenges associated with autism. If you don’t know where to look, that can be all you’ll find.

To me, my diagnosis is a little paper that says, “You’re not ‘crazy.’ Yes, your body does have a mind of its own. Love yourself.” I chose not to get hung up on the negative and try to always focus on the positive. “Anna is an exceptionally bright woman on the autism spectrum. She struggles with [. . .] ” Let’s not worry about the list that comes next. I can’t live my life drowning in negativity.

I’m not a special snowflake. I am just a girl trying to live an authentic life while loving and accepting herself — autism and all.

To those who think I’m “obsessed”:

I know you may not understand my “obsession.” You may think I am overthinking my diagnosis and believe I am letting it define me.

I am not my diagnosis. It does not define me — it explains me, and answers all of my questions. The secrets I’ve kept my entire life.

Now that I know the truth, I’m not ashamed anymore. I’ve never felt more free and alive. I wish you could understand that, for me, finally knowing the truth has been life-changing.

Image via Thinkstock.

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When People Tell Me I 'Can't Be Autistic'

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A powerful hashtag (#SheCantBeAutistic) has been blowing up on Twitter lately, bringing attention to an issue I’ve been talking about a lot recently.

I was not diagnosed until I was 30 years old because people thought #SheCantBeAutistic.

They were wrong. I am autistic, and I spent too many years waiting to find that out.

Below are just a few of the reasons I’ve been told I “can’t be Autistic.”

#SheCantBeAutistic – she has a great job.

#SheCantBeAutistic – she pays her bills on time.

#SheCantBeAutistic – she works full-time.

#SheCantBeAutistic – she has a husband.

#SheCantBeAutistic – she has pets.

#SheCantBeAutistic – she is too smart.

#SheCantBeAutistic – she wears makeup.

#SheCantBeAutistic – she is very talkative.

#SheCantBeAutistic – her imagination is really good.

#SheCantBeAutistic – she has feelings.

#SheCantBeAutistic – she knows how to read and write.

#SheCantBeAutistic – she is successful in life.

#SheCantBeAutistic – she seems happy and warm.

People make assumptions and use stereotypes to make snap decisions about people. Autistic people are all individuals (just like non-autistic people are all individuals). I fight these stigmas every day when the way I present myself does not match what other people expect of me.

These assumptions are part of the reason so many autistic women go undiagnosed. We go our entire lives feeling different but not knowing why. We grow up believing the stereotypes we hear about autism and don’t ever think we fit that description.

Then one day we hear an autistic person’s point of view — like a lightning bolt, something stirs. There it is, the truth breaking through all the assumptions.

I wish the truth didn’t have so many obstacles, so people could just accept autistic people as they are without assuming how they should be. We are not cookie-cutter people. Every single one of us is an individual. 

Follow this journey on Anonymously Autistic.

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Planning a Trip to Disney World With My Child on the Autism Spectrum

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Recently, our older daughter, Kendall, kept begging us to take a trip to Disney World. We believed as a family with a child on the autism spectrum, Disney World would be too much of a challenge. Oftentimes our vacations are simple family trips without any large-scale plans. In the past, when there has been too much unscheduled time on vacations, it became stressful for our son Gavin, who is on the autism spectrum. It resulted in meltdowns and a one- to two-week turnaround to get Gavin back on his regular schedule when we returned home. Nonetheless, we knew Kendall’s patience was fading. The idea of taking a vacation without Gavin left me devastated, but consistently telling Kendall her brother wasn’t ready didn’t leave me feeling any better. So we made the decision we would travel as a family of four to Disney World and work on any challenges that might arise.

I was feeling a lot of stress about the trip, and talking to everyone else about their trips to Disney World left me feeling even more anxious. Prior to going to Disney World, we received a lot of “good luck” comments from friends and family members. They quickly followed the remarks with statements about how we would need a vacation from our vacation when we returned. Many offered how busy Disney World could feel and shared with us that we would probably feel over-scheduled. My fears about this trip started to increase with every passing conversation. We had already struggled to enjoy a family trip in the past, and this was a lot of money to throw at something that might be an even worse experience for Gavin.

Luckily, this was not the case for us. In reality, all of the active schedules and plans made our trip easier. Gavin understands schedules; he thrives on them. I had convinced myself it would be a stressful trip, but it turned out to be magical. Disney World gave us the vacation we had been wanting for three years. Disney World gave me the first opportunity to sit back and watch my children smile, laugh, and stare off in amazement as they interacted with various characters and attractions at the parks.

When left to his own decision-making for activities, Gavin often struggles with the many different options. Disney World’s schedules and plethora of online information allowed us to preview everything for him so he had an idea going into the trip of what to expect. Disney World provided everything we needed as a special needs family to give Gavin an enjoyable vacation. He woke up every day with a schedule of what we were going to be doing and had to show little flexibility or decision-making throughout the day. When we encountered a line not worth waiting in, we used “this then that” language that he was familiar with from his classwork, and it helped the majority of the time. None of us felt over-planned. For once, I felt relaxed. We were all finally enjoying a family vacation.

If your family has a child on the autism spectrum and you are considering a trip to Disney World, I would also encourage you to look at the Disability Access Service (DAS) plan. This plan allows guests with disabilities at the Walt Disney World Resorts to receive a return time for attractions based on the current wait time. Disability Access Services can be accessed by visiting guest relations at any of the four parks. For more information regarding Disney’s disability services, click here.

family riding small world ride at disney world

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Why I Play an Autism-Friendly Santa and Penguin During the Holidays

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The holiday season is one of my favorite times of the year. When I was growing up on the autism spectrum, music became a form of therapy for me. This started with Broadway tunes but then also with an absolute love of Christmas music. “Silent Night,” “Jingle Bells” and so many more classics made me fall in love with the holiday season. As I got older, between listening to Michael Buble’s Christmas album, watching the movie “Elf” or just spending time with the family, I truly was able to fall in love with every moment I’d have during the season.

As someone who has overcome many of his challenges on the autism spectrum, I try to give back to our community as much as I can. This started several years ago by mentoring teens with autism and other special needs. I never had a positive role model I could look up to growing up. This made me want to support the future generations of kids by being a mentor to them during their development.

While this has been a life-changing experience, once thing I noticed was that there had to be some way I could connect to the larger special needs community. That’s when the idea came about to help children on the spectrum. Now every year I dress up as Santa Claus to give children with autism a chance to meet the big guy in a sensory-friendly setting. We have sponsors donate to have the kids come free of charge, and any proceeds from the event go to a college scholarship fund for students with autism.

Each kid I meet has my complete attention for those few minutes. Each one of them has their own story, and every time I interact with them, I try to meet them where they are. Whether it’s me sitting on the ground playing with toys with them or keeping my distance if they want or need space, I’m here for them to have an amazing holiday event.

This event led me to get more involved in other events in my hometown. An autism school I’ve spoken at in the past has a holiday breakfast each year, and now I go to volunteer as an autism-friendly penguin to hand out toys to the kids.

No matter where our journey takes us next with these events during the holidays, I can only hope our community will continue to find ways to volunteer and give back to others. Volunteering and getting involved is one of the best ways you can support us not only during the holidays but all year round.

Wishing you all happy holidays!
Kerry, the Autism-Friendly Santa and Penguin

You can learn more about our Autism-Friendly Santa event for this year here.

A version of this post originally appeared on Kerrymagro.com.

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7 Ways We Make Holiday Activities More Enjoyable for Our Child on the Autism Spectrum

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Oh, the holidays. Just the word conjures up idyllic Normal Rockwell images of family gatherings, tasty food and joyful faces. But for my daughter, large gatherings can also mean extra stimming behaviors as she tries to regulate her sensory intake, and meltdowns. My biggest challenge of the holiday season as the mom of a child on the autism spectrum is the question of whether I am actually providing happy, holiday memories for her or merely increasing her stress and discomfort.

The line between fun and overwhelm can be small for my daughter. Excitement and anxiety can feel awfully similar. Here are a few ways we’ve learned to manage this challenge.

First, we include my daughter in plan-making. We ask her what she thinks she’ll be able to tolerate. We give our feedback. We decide together what holiday events will be included and what holiday events we’ll skip. For example, for her birthday this past year, she opted to skip the friend birthday party.

Second, we find alternatives. Instead of the birthday party, we chose a special activity that would be more enjoyable for her. We find smaller group gatherings. We do fun family activities at home.

Third, if we all choose to attend a holiday event, we talk about it and prepare ahead of time. Sometimes this looks like reading social stories together. Sometimes this includes role-playing. Sometimes this includes contingency planning or determining a secret code to alert us when it’s time to leave.

Fourth, we pack up and bring every tool we might possibly need. Weighted blanket. Chewies. Snacks she likes. Ear defenders. Gum. Brush. Every tool that works is thrown into her Nesel Pack.

Fifth, we always determine a time limit beforehand. And we discuss it with every child in our family. They know we will be leaving after dessert, or in an hour, or that we’ll go to the play but are not going to be going back to Grandma’s for the after-party.

Sixth, we model flexibility by being flexible with our own holiday traditions. Sure, baking Christmas cookies is a fond memory I have from my childhood, but it’s OK if my children have different memories. I’d rather they have memories filled with fondness then memories filled with frustration and overwhelm.

And finally, we focus on environment, mood and emotions rather than events and things. What emotion am I wanting to fill our family’s holiday season? Does this particular activity trigger that emotion or trigger something different?

I can’t say these things have totally eased my biggest challenge. I still often wonder if I’m being a good mom, and I struggle to find the balance of exposing my child to these activities and protecting her from potential pain and overstimulation. But I can say it is getting easier. The challenge is becoming smaller. And as my daughter and I both learn more about her beautiful neurodiversity, we’re learning how to have happier holidays.

Follow this journey on The Fringy Bit.

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The Beauty of 'Just Following' My Grandson on the Autism Spectrum

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Taking my grandson Noah to our local park is always one of my daughter Sara’s favorite things to do, but there are differences about him that some might find “unusual.” For instance, he doesn’t really like the fenced in yard where all the playground equipment is. As much as he likes his own slide in our nice, little, quiet backyard, he usually doesn’t want to go down the brightly-colored slides at the playground, or stomp across the loud bridges that shake with every step, or go through the stinky, sticky tunnels that connect everything together. I think he actually likes all those things very much, but there are so many other kids there, and they all move so fast, running and laughing and screaming. He seems to prefer sitting close to the outside of the perimeter and watching all the action from there.

What he does like to do, though, is hunt for small piles of leaves. Or mulch. Or gravel. Or sand. Basically, any object with an interesting texture that will fit in his little hands. Once he has found a little gold mine like that — which, if you think about it, is every five steps in a park — it’s really hard to distract him with anything else. He grabs two big handfuls of whatever treasure he’s found in that five-foot vicinity and holds his little arms as high as he can. And then he crinkles his little fingers together, as if he’s trying to feel every different texture between each one of his fingers, making each pebble or grain of sand fall separately. And as it falls, he watches the wind take all the smaller particles away in different directions and all the larger rocks and sticks fall to the ground. Every texture and weight has a different effect, and he explores each one with every sense he has.

There’s a duck pond at this park as well, and he always, very slowly, makes his way there. But usually, the ducks are pretty bored with all the people and their pity bread, and they stay in the middle of the pond, which doesn’t interest Noah much at all. If they’re not right in front of him, he doesn’t take notice of them. We point and ask him to look at the pretty ducks, but he’s there for a completely different reason. He’s on a mission, and he knows exactly where to go to find his next little miracle in plain sight. Right at the edge of the pond, there are these little gray rocks that are just the right size for his little hands, and he loves throwing them in the water. This is where Noah loves to sit. He always seems to have a wonderful time there, just throwing those perfect little rocks into the pond, listening to the plopping sound, watching the splash and then the ripple effect that happens afterward, magically finding its way, in perfect circles getting bigger and bigger, all the way to the edge of the pond.

He showed me. It really is beautiful.

You see, it doesn’t matter that we think Noah should be fascinated with the ducks. Or the slides or the rocking bridge or the laughing, screaming children, or any of it for that matter. Noah finds all these little magical observations in things many of us may not normally see.

He thinks the ripples in the water are the most beautiful thing at the park.

He’s fascinated by the way the wind carries some things way up into the sky and others just fall to the ground.

He likes to stop and rub his hands on the bark of the rough trees, or stop to feel the soft leaves of a bush we just passed, or a patch of bright green clovers way in the corner by the fence.

He sees everything.

And he often wants to touch and feel and experience every texture, smell and taste of every new object he sees.

Every. Single. One.

I think he’s trying to show us that we should be seeing and touching and smelling it, too. And we do! And it’s wonderful! Although, the tasting thing is not recommended. For him or you.

The point I’m trying make is this: A trip to the park with Noah may not be your “typical” trip. I feel it’s actually a lot more fun, but you have to know how to do it.

You have to let him take the lead.

And you have to appreciate what he’s showing you.

Noah reminds us how easy it is to find the beauty in the things we can so easily overlook in our everyday lives. You just have to know how to “be” with him. This is something our family knows. We’re used to it. It’s our normal.

Recently, Sara and a friend were going to the park, and she was bringing Noah with them. This friend knows Noah is on the autism spectrum, and he said he thought it would be fun to hang out with him, but Sara had some reservations. She understands what many people think a trip to the park is “supposed” to be like, and she knew this trip likely wouldn’t be like that.

What would this friend of hers think? Would he think it was strange? I could tell when she left, she was more than a little nervous about how this little outing would turn out.

I was nervous for her.

To be honest, she was gone a lot longer than I thought she would be. I kept thinking that had to be a good thing, right? I was right, of course. When she finally got home, she told me they had a great time! The very first thing she told me was that as she was taking Noah out of the car, she was asking her friend what he might like to do first.

Maybe the playground? (Please not the playground.)

The ducks, maybe? (We won’t need any bread.)

She nervously waited for his answer and was already thinking about how she would explain Noah’s behavior with whatever activity he picked, but then he said something that was just about the most perfect thing he could have ever said:

“Let’s just follow Noah.”

Those four words took all the pressure off Sara. She put Noah down, along with the weight of the worries she had about the rest of the day, and they did exactly that. They followed him to every corner of the park. He would walk off in different directions when anything new or interesting caught his eye, leading them to far corners of the park where I doubt very many people spend much time. When he stopped at a pile of leaves to figure out the wind direction at that moment in time (because, trust me, he will check that again in about five minutes with a different pile of leaves), her friend didn’t ask questions about why he does that; they just sat and watched and talked and laughed about the cute things he did. Then they would follow him to some other corner where he found a yellow leaf or an interesting stick or some other jewel just laying on the ground, and they would just sit to watch him again. He was never offended when Noah wouldn’t respond to his questions, and it didn’t stop him from trying to interact again.

When they eventually came to the duck pond, Sara was ready for him to start finding those perfect little rocks and start throwing them in the pond, but the ducks were actually paying attention to the humans that day and had come up onto the grass. When Noah caught sight of them, Sara told me he was beyond excited. He ran as fast as his little legs could carry him. He just had to touch them. When all the ducks started to scatter, Sara said she tried to stop him because she thought it might aggravate the other families that were feeding them. Her friend gently held her back and very kindly said, “Let him go. It’s OK. He wants to chase the ducks. Let him. It’s a public park.” Again, I don’t think Sara could have heard anything better. So for the second time that day, she let Noah, and everything else, go. His little feet hit the ground running. He headed straight for the ducks and, of course, they all flew away and landed in the water. Imagine the ripples! To Noah, that was just about the greatest thing ever! And when he turned to look at Sara, she said the smile on his face was from ear to ear. Sara’s smile, I can only imagine, must have been just as big.

I only wish I could have been there to see it.

After a long day of following a 2-and-a-half-year-old around a very large park (with many long stops in odd places), they eventually made it to the water fountain that Noah loves very much. Sara said they stayed there a while and watched him play in the water until she knew he was just too exhausted to go on anymore and came home. Happy.

I’ve had a couple of days to think about that day — about the way Sara felt before she left.

She was nervous about so many things. Things like acceptance of her son. The ignorance of strangers with their sideways glances. The confusion her friend might have about his odd-seeming behaviors. The questions she might have to answer. Will he get it? It felt like so many things she had to worry about.

But when she got home that day, all that worry, all that nervousness and tension, every confusing emotion she was feeling when she was getting Noah out of the car seemed to melt away with four simple little words:

“Let’s just follow Noah.”

It’s what Noah has been telling us for two years.

“Follow me.”

“Look how pretty the ripples in the water are.”

“Look at the cool way some of this stuff falls and some of it flies.”

“Feel this tree! Isn’t it cool?”

“Follow me! I’ll show you!”

We figured this out a long time ago — how to follow Noah. But to hear it from a friend? A friend without a lot of experience with children on the autism spectrum? Well, let’s just say it doesn’t happen often. It meant a lot to Sara to be able to relax and enjoy the day, because he accepted our normal.

No questions asked.

I’ve recently read a lot of articles about how to help friends with children who have special needs, and there are a lot of good ones. The problem is that every family has different needs, which require different solutions.

What I figured out this past weekend is that for our family, you don’t need to be a hero. The best thing you can do is, first of all, just show up, and after that say, “Let’s just follow Noah.”

Now, don’t get me wrong. Following Noah is sometimes not an easy task. Sometimes you have to follow him up mountains. But if you choose to accept the challenge:

He’s going to take you to the corners of the park you’ve never noticed before.

He’s going to show you the beauty of a ripple in the water.

He’s going to show you the world like you’ve never seen it before.

And I know you’ll be grateful for it.

All you have to do is follow him.

He somehow already seems to know the way.

But be careful, because he’s going to steal your heart in the process, and after that, you’ll never be the same.

Image via Contributor.

View the full, original version of this post on G-Maw and Noah.

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