What Does Autism and Sensory Overload Feel Like?

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I was having a deep conversation (via Google Hangouts instant messenger) with a close friend about my autism. He made a comment that he did not see autism as a disability, but more as an alternate way of thinking that is not serviced very well by the modern education system. I agree – partially…

Quickly I realized that no matter how hard I tried, there was no way I could accurately explain or convey the parts of my autism that truly “disable” me. Searching the internet, I quickly found a few articles with other Aspies who had attempted to explain what I currently could not – the negative things that neurotypical people have a hard time comprehending.

“What does autism feel like?”

In that moment I was completely unable to explain.

The most disabling part of autism (for me) may be its invisibility and my status as “high-functioning.” Everyone expects me to do OK. I am smart and use my ability to pick up on patterns to get ahead in the world. I am one of those “gifted” Aspies, so my autism must be a gift right?

My good days are amazing, but on my worst days my sensory overload won’t let me out of bed. Currently I am averaging about three really bad days a month. They hit at random and stop my world in its tracks.

People can’t tell when I am having sensory problems. Some days are worse than others, and most days I am in at least mild pain at all times. The lights hurt my eyes and head, smells make me gag, small sounds nag at me constantly, I walk into walls, trip over things, and sometimes miss my mouth when I eat.

I miss many things in most conversations. I am awkward, weird, and my intentions are often misunderstood. If someone is not smiling or looking pissed off I can’t read them – unless I know them very well. Normally I have no clue when I’ve offended someone.

Autism feels like I am out of sync with the world and its people. I am alone in a lot of ways. That may sound sad, but honestly I am happiest when I am alone with my own thoughts.

Below are some of the items I found while researching how to better explain sensory overload.

I can take no credit for anything below.

1. Lori Sealy, a Mighty contributor – “My Answer to the Question ‘What Does Autism Feel Like?’,” talking about her sensory processing difficulties.

“My visual experience is also rather radical. Bright light can be painful — honestly, any light can be painful and I often compensate with sunglasses. I can also get overwhelmed by the sheer amount of imagery that my mind is attempting to process at one time. I take in everything in a panoramic sense — and that sometimes makes it hard for me to focus on the central thing I’m supposed to see. I’ve found that wearing a ball cap helps me filter, by force, that which is crashing in by flood — it works in the same sense that “horse blinders” do at the race track.”

2. “One Guy’s Opinion: What it feels like to have autism as an adult” by Esther

“In general…

  • Before you know you have it, you simply assume that you have an odd personality.
  • After you find out that other people are in the same situation as you, you realize that you are in fact quite a normal autistic, and that many of your quirks are symptoms.

Social experience…

  • You have some trouble taking hints, but only figure this out very late, or when other people tell you. It takes you very long to learn how to pick up in hints, and you never learn pick up on all of them.
  • You sense that other people place more importance on how they are feeling. It affects their judgement, and things that are not based on logic and facts may come off as unreasonable or immature to you.
  • You notice that people spend more time on small talk and polite phrases than you, but you don’t like it, as it don’t really convey useful information. You may have trouble initiating conversations with strangers because you lack skills in this area.

Video Simulations to Help You Experience Sensory Overload

1. “Carly’s Café – Experience Autism Through Carly’s Eyes”

Carly Fleischmann is a nonverbal autism advocate and YouTube talk show host. She is amazing. I strongly recommend you check her out.

2. “What it’s like to walk down a street when you have autism or an ASD”

More great videos on Craig Thomson‘s YouTube channel.

 3. “Autism: Sensory Overload Simulation

Check out the streamofawareness YouTube channel for more.

4. “Sensory Overload Simulation”

More from WeirdGirlCyndi on YouTube.

Follow this journey on Anonymously Autistic.

Image via Thinkstock.

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Why I'm Asking More Businesses to Offer Sensory-Friendly Clothing Options

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Have you ever been in a situation where your child won’t wear clothes with tags on them due to sensory issues?

This is something my parents can relate to as well. Growing up on the autism spectrum, one of my biggest challenges was having a speech delay until I was 3. Once I began to start talking, one of the things I often shared with my parents was the uncomfortable sensation of shirts with tags. They would often have to cut the tags off my clothes before presenting them to me to try on for the first time. If there was a tag on them, and I tried them, even if they cut them off after I took the shirt off, I would never wear it again.

That negative connection I’d have for certain clothes would continue for many years during my adolescence. As part of my early intervention plan, my parents started getting me used to different sensory activities that I’d do with my occupational therapists. I had a sensory brush that I’d use for a few minutes each day, starting by using it on my hands, then on my arms, legs and shoulders. This helped tremendously towards my sensory development.

I also loved wearing Hanes shirts when I was a kid because there were absolutely no tags. Being a huge Michael Jordan fan helped with my love of Hanes, as he became the poster celebrity for the entire Hanes brand from all the commercials he’d do over the years for them.

Today I can wear all types of clothes, regardless of tags. As a disability advocate, I advocate for our loved ones by asking local businesses to consider sensory-friendly clothes for our community. This advocacy has included asking businesses to go tag-less, provide soft, pleasing fabrics for their clothes, and offer Velcro shoe options for those who might not be able to tie their shoes.

For those reading this today, I hope you will be able to advocate for businesses to provide sensory-friendly options as well. These items are not only helpful for our loved ones but tend to be more comfortable for anyone. That is a win-win I hope more businesses will consider in the future.

For more on sensory-friendly clothing I’d recommend reading this article on freindshipcircle.org, “8 Online Stores to Purchase Sensory Friendly Clothing.”

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

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Helping My Daughter With Autism Between 'I'm Fine' and 'I'm Really Not OK'

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My 11-year-old daughter is on the autism spectrum, yet many of the difficulties she faces day-to-day are hidden. You cannot look at my daughter and “see” her autism. She does not stand out. My daughter hides her difficulties so no one else can see. She will power through her day, using strategies that have taken years to adopt. She will look you in the eye and smile and say “everything is OK,” but this doesn’t necessarily reflect her mood. 

She lives by her own rules and plows through her day trying to make sense of the societal constructs placed on her. Sometimes she gets it “wrong” and misjudges. She is not keen on unknown people and places or the unsuspecting reactions of strangers. Every person reacts to the world in a different way, and this does not make sense to her; it is not only confusing but scary. 

My daughter will obsess over every detail so she can prove to you that she can not only do something, but do it well! She loves to achieve, and will work at 200 percent just to show you she can do it. 

But all of this comes with a price. The thinking and plotting, the extreme concentrating and effort. The guessing and double guessing. All of this exhausts her. Her constant pushing to meet expectation takes her to the point where by she cannot give anymore. It can all lead to a meltdown. She doesn’t mean to be rude or aggressive; her nature is loving and considerate. But I understand that place she must go to time to time when she simply has had enough. 

I may not be the best mother all of the time. I find the change in mood and meltdowns distressing at times. But I have learned this is not my struggle. I see her uncontrollably upset, and I remind myself these are her emotions, not mine. We all live somewhere between “I’m fine” and “I’m really not OK,” but we continue to work towards our happy mediums. Every step we take to get there on our journey takes practice and effort, but I know she will find her balance eventually. Until then we plod along, aspiring for balance not perfection.

Image via Thinkstock.

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I’m a Self-Sufficient Autistic Adult Who Hit My Supervisor in a Meltdown

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I’m an adult on the autism spectrum. I drive my own car, and for the most part, I have many self-help skills and I speak just like anyone else. I work as a therapist with young autistic children. Due to the nature of my job, I am required to get a tuberculosis (TB) test every year. The test involves a needle, which is something I’ve had a severe phobia of for as long as I can remember. To be perfectly honest, I’ve always had a general phobia when it comes to medical procedures, even the painless ones. So, when it came time for my yearly test, my supervisor accompanied me to provide extra support. She and I have been close for several years, and she has been there to support me in many other ways, even before my employment. 

In the waiting room for my test, she tried to distract me with pleasant conversation. I was starting to feel scared, so I only gave short answers and never returned any questions. When they called my name, I slowly walked into the room, feeling even more scared than before. I began to sweat and felt tears coming, despite the fact that the needle hadn’t even been presented yet. Eventually, I was instructed to sit in a chair to get the injection. At this point, I realized I wasn’t going to get out of the test, and I actually had to do it. I began hitting myself and yelling to further delay the process. I plopped down into the chair, only to intentionally fall out of it a few seconds later. I landed on my knees and began to cry. I hit my supervisor and then began pulling on her arms. I felt like I couldn’t speak or even breathe, like I was drowning in my own fear. I was a hyperventilating, crying mess on the floor.

My supervisor took my hands, encouraging me to breathe slowly and use words to communicate. I was eventually able to sit back in the chair and was even able to express that I didn’t think I would be able to keep my arms still. I asked the nurse to hold my entire arm while she did the test and my supervisor to hold my other hand. It was over in less than five seconds, and somewhere in my head, I knew that’d be the case. 

If I’m so “high functioning,” why do I still engage in these harmful behaviors?

An individual with autism may have mastered many coping skills and emotion-regulation techniques, however, when highly escalated, these skills can be difficult for him or her to access. 

It’s like being on the 100th floor of a building with only stairs and needing to sign an important document. The problem is, all the pens are on the first floor. You know you need a pen, and you know how to use one, but when you’re up at the top, it’s difficult for you the access the pen and therefore, the skill of using it. 

Sometimes, when an autistic individual becomes highly escalated, he or she may engage in maladaptive behaviors such as self injury, aggression or elopement. Even though the person may have verbal or other communication abilities, he or she may have a hard time accessing them due to being so highly escalated.

Rather than hitting myself or my supervisor, I could’ve asked the nurse to give me a minute so I could take a few deep breaths. Instead of falling on the floor, I could’ve stayed in my chair. However, I was in such an escalated emotional state, I couldn’t access those skills at that moment.

Autism doesn’t go away when a person turns 18. Many autistic individuals will need ongoing support in some way at certain points. “High-functioning” doesn’t mean a person doesn’t need support. Autism affects everyone differently, and it’s OK to need extra help with certain things. 

I’m fortunate to have an understanding employer and a supervisor who cares so much about me. I hope someday autism services comprised of highly trained and understanding individuals are available to all who need them. 

Image via Thinkstock.

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To the Parent of an Autistic Child, for the Times Your Path Feels Rocky

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To the mom or dad of a child on the autism spectrum,

The road we are traveling can feel tumultuous at times — rocky, unpaved. Honestly though, the rocky path isn’t so bad.

I began this journey more than seven years ago. At first, it resembled the same paved road traveled by other parents. Then, one day, it didn’t. The pavement disappeared, heavy rains turned the dirt muddy, and the fog made it hard to see where I was. I fell down almost every day.

I stumbled to the ground a few times just yesterday. Then, I picked myself up and painted a mud mask on my son, Nicholas. I told him he was a lion in the rainforest. He gave a happy “roar” and marched courageously through the muddy path alongside me. His smile sparked enough strength to keep me going.

I did not choose this path; this path chose me. I am not the same person I was before I traveled this road, and I’m not sorry it happened. That’s right. I said, I’m not sorry.

Imagine that everyone you know is a gold miner. Your family raised you with gold fever. Your friends gloat endlessly about their gold riches. Your entire community thrives on gold treasure. You spend your life learning the tricks of the gold trade. After a lifetime of preparation, you begin your quest for gold.

Months of hard work pay off when you mine something that looks interesting. Barely able to contain your excitement, you rush home to share it with everyone you know. Your family asks, “How heavy is it?” You say, “It’s not very heavy.” Your friends ask, “When you melt the metal, is it enough to make a brick?” You respond, “It doesn’t melt, and it’s not metal.” Your neighbors ask, “Is it white gold or yellow gold?” You answer, “It’s not gold.”

You’ve never seen anything like it. Its sparkle excites you. Its uniqueness is captivating. You know what you’ve found is spectacular, but it doesn’t meet anyone else’s standards. So you cherish it quietly.

One day, something phenomenal happens. A stranger sees the treasure you’ve hidden away. They say, “It’s a diamond, and it’s beautiful.” You had no idea what a diamond was, but you knew it was the most amazing thing you’d ever seen. It was more precious to you than gold, and you knew that from the moment you saw it. You came upon your diamond unexpectedly, and now you never want to let it go.

Your diamond is magnificent. Please don’t ever let anyone convince you otherwise. Your tumultuous journey is not in vain. Its purpose is to prepare you for what lies ahead. And it doesn’t mean you will always be on this path alone. It just means you’ll build your tribe slowly, with time and patience.

I know what you’re wondering. It’s a question I’ve asked at least a hundred times. Does it get easier? It might not. Instead, you get stronger. You learn to recognize greatness where other people miss it. You figure out that most people learn to love in spite of things, but you teach yourself to love in anticipation of things. Usually, unconventional things. Few people are capable of this unless they’ve traveled our path.

If you’re like me, you’ll find that your flame burns hotter than most everyone else. Your mama/papa bear roar creeps out prematurely every now and then. This is because your emotions run unfiltered. You’ve learned to love deeper. You’ve learned to fight harder. You know what matters most. Because of this rocky path, your passion has become instinctive. It’s not a bad thing.

It’s OK to struggle. It’s OK to be afraid. It’s OK to get things wrong. It’s entirely OK to be unsure of what you’re doing most of the time. I remind myself of this every day. It’s also what I tell Nicholas. Although, I’m pretty sure he figured this out long before I did.

This journey is all about learning to master the struggles of life. It’s about teaching ourselves to convert frustrations into passions. It’s about figuring out how to struggle with our dignity in tact, so that we can teach our kids to do the same. On this path, we struggle with purpose. And the best part is that every beautiful diamond we find along the way is ours to treasure.

Follow this journey on Nicholas Logic.

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Why My Daughter With Autism Will One Day Take Over the World

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Every year as part of the IEP process, we, as Caroline’s parents, are asked to write a future planning statement. This is just a couple of sentences speaking to our aspirations for Caroline. I look at the future planning statement as an opportunity to tell the IEP committee we, in no uncertain terms, have exceedingly high expectations for Caroline, and thus for the members of her IEP committee.

Caroline puts in the hours. She attends school for 31 hours a week and then receives an additional eight to 12 hours of therapy on top of that — which means most weeks she works more than 40 hours. I can count on one hand the number of times Caroline has not been diligent and engaged during therapy. Given the hours Caroline spends learning whether her voice needs to be on or off for a particular sound, developing a motor plan to put on her shoes and gaining the hand strength necessary for pre-writing skills, I think she deserves my confidence that she will achieve great things in her life. I have high expectations for Caroline.

Anyone who works as hard as she does earns success, and that will not be different for Caroline. I will not let anyone tell her, her hard work should be less valued than that of any of her peers. Thus Caroline’s future planning statement reflects not our hopes and aspirations for Caroline, but our expectations for her. She deserves nothing less than for her parents, family, teachers, therapists and friends to have the highest of expectations of her, because anything less would be devaluing all of her hard work.

Caroline’s future planning statement:

Caroline will ultimately be a well-adjusted, contributing member of her community. To us, this means Caroline will obtain a college education that will allow her to establish herself as a professional. To do this, Caroline must continue to improve her communication skills, gain a greater degree of self-regulation and be able to develop meaningful relationships with peers. In the short term, Caroline must become fully potty-trained, be able to follow routines with minimal assistance, and develop the reading and mathematical skills and knowledge necessary for future academic success.

It might take a little longer to develop some of the foundational skills necessary for success, but with Caroline’s work ethic, her potential will know no limits. In other words, Caroline will one day take over the world, because we as her parents expect nothing less of her.

Follow this journey on Failure to Thrive or Ability to Overcome?

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