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The Way I Communicate Is Different, Not Less

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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.

Follow this journey on Anonymously Autistic.

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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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Image via Thinkstock

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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.

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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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