Man With Asperger’s Explains How He Experiences the 5 Senses

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Bryan Chandler, who runs the Facebook page Asperger’s Syndrome Awareness: Bryan’s Advocacy, wrote a detailed post about how sensory issues can affect those on the autism spectrum.

Chandler has Asperger’s, and he hopes sharing his post will educate others and make them more understanding about the kinds of sensitivities people on the spectrum may have to food and touch, among other things.

Chandler wrote:

Asperger’s Syndrome and sensory issues (detailed). Written by an adult with Asperger’s.

Hearing: Have you ever wondered why the person with Asperger’s doesn’t respond to his/her name or may appear like they’re ignoring you during a conversation? The reason being, we can have difficulty understanding the difference between background and foreground noise, so someone which could be in another room could sound just as loud as someone standing next to them. We can pick up on the smallest of sounds and the loud sounds can hurt our ears.

Smell: Have you ever experienced such a strong smell that you just needed to leave the room? In a public restroom, maybe, or maybe down an alley? To someone with Asperger’s that sensation can be present just by walking in a supermarket or even at home. It has no reflection on how clean your environment is, it’s just our keen sense of smell rearing itself.

Taste: Moooooom!! That’s disgusting! I can’t eat that! How many times have you heard that statement? Perhaps your child/adult/self is only able to eat three foods, and does not eat anything else no matter what you try? Imagine chewing on a piece of cardboard, that’s how eating certain foods can be like for those with Asperger’s. Please be aware.

Sight: Can you do me a favour? Stare at something, completely focus on it and space out. Do you see how your vision becomes all blurry and disorientated? To a person with Asperger’s this can happen at random moments without warning, mainly when there’s too much activity in our environment to process.

Touch: Has a person with Asperger’s ever jumped or become agitated at the slightest touch? It could even be a slight tap on the shoulder, or a light brush with the tip of your fingers. You may think our reaction is a little over the top, but no, it can actually feel like someone’s just poked us with a stick. If I picked up a stick from the garden and poked you with it I don’t think you’d like it either.

Sensory overload: is when two of more of our senses come together to perform the above and it can be incredibly stressful and make us feel overwhelmed. This is why we need constant time outs and time to recharge our social batteries. Please be respectful.

If you can share this status that would be great. Let’s educate the social media world on Asperger’s Syndrome and sensory issues. Thank you for reading.

Until next time – Bryan

Asperger’s Syndrome and sensory issues (detailed). Written by an adult with Asperger’s.Hearing: Have you ever wondered…

Posted by ASPERGER’S SYNDROME AWARENESS – Bryan’s Advocacy on Sunday, January 17, 2016

 

Chandler was diagnosed with Asperger’s when he was 23, and he uses his Facebook page, which has over 175,000 likes, as a platform for raising awareness and helping others with autism.

Lead image via Thinkstock

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The Hardest Part of Asperger's

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Socialization isn’t always the hardest part of Asperger’s for me. For as long as I can remember, I have had a harder time with the period immediately following a social encounter than the actual encounter itself.

For example, recently, I met a new guy. We spent the night together (no funny stuff, just a sleepover). It was a renewing feeling. I felt happy. Save for some minor confusion in body language and intention, I thoroughly enjoyed the time we spent together.

I noticed that about an hour after he left, my mood began to decline. I went from cuddly and euphoric to melancholy and volatile.

I attribute this disturbance to two things. First, the extreme exhaustion of having to carry on around a person unaware of my diagnosis for any extended period of time, and the added fatigue from the expended effort of censoring my thoughts, words and actions in their presence.

The second aspect I attribute to this difficulty is the transition from being in good company then going back to lonely. This all but kills me.

I know how it could look like I don’t enjoy being around other people. But in reality, it is the feeling that directly follows time spent that forces me into hermit mode and discourages me from future encounters.

It is frustrating. I cry. I feel overwhelmed. I question every word said and every action wondering if I have said something to make them never want to come back again. I feel confused. Lonely. Wonder why I can’t just be “normal.” I become angry with myself for not learning faster and understanding better.

I feel guilty for thinking for a minute that this may actually be the time things work. I feel angry for being vulnerable and convincing myself I would finally feel understood and loved and accepted for exactly who I am when nobody’s watching. For letting my guard down. For thinking this was the only way I would find somebody who would actually be afraid to lose that version of me. The one I try so desperately to be comfortably.

I snap a ribbon around my wrist to stay centered. My wrists are always the first place I look for answers. I’ve never tried that route. I’m lucky for that. The ribbon reminds me.

Sometimes I wish I had someone to reassure me I’m not the only one who feels this way. I’m not sure what they would say that could make me feel better because it hasn’t happened yet. Maybe just a shoulder, a joke to take my mind off things, even though I may still miss the punchline. Its the time and effort spent that make the difference. That’s what’s most important to me.

That is the hardest part of Asperger’s for me.

A photo of Emily smiling
A photo of Emily smiling

Follow this journey on Awkward Is Awesome. A View From the Spectrum.

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.

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To the Doctor Who Misdiagnosed Me With ADD

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First of all, I know you’ll never read this. I know that for certain because I saw your obituary. But I’m still going to write this as if to you, because I wish I’d had a chance to say these things to you. For years I didn’t think this experience had bothered me as much as it did. But the older I’ve gotten and the more I’ve learned, the angrier it gets me.

In a psych class we were given an assignment to write a letter to someone we held a grudge against. I tried to think of someone. I thought of family members, past friends and even past enemies. But none stuck out. Until I remembered you. Now, I want to clarify. I don’t think you’re a bad man. I really don’t. I believe there’s a possibility you thought I really needed that medication. But I also think you’re smarter than that. Still, I figure that’s what you told yourself, at the very least.

When I first came to you, I was hopeful. I had terrible experiences with psychiatrists and psychologists in the past, but I’d heard about you. I don’t remember from who. Perhaps it was the doctor who recommended us to you, or perhaps it was a patient in your waiting room. But I heard you were smart. I thought you could help me. And at first, it seemed to work. My anxiety and depression were fairly obvious and, for the most part, under control. But there were still little problems I had. My friend had been diagnosed with ADHD prior to this, and while I wasn’t hyperactive, I did have some troubles focusing. So my parents and I suggested that I might have ADD.

You immediately agreed. The way I remember it, you were signing a prescription before the words even left your mouth. You were going to put me on a medication that would help me.

Except it didn’t. All of a sudden I was terrified to leave my room, let alone my house. Honestly, I have very few memories of that time. But I do remember coming back to see you, and you telling me to give it more time. That’s the time period I forget. But I remember the day it became clear the medication wasn’t working. You, like the doctors before you, passed me off to someone else. And I was heartbroken. Not because I wanted to stay with you; I always sensed that you didn’t like me, so I didn’t like you. I was upset because I had it in my mind that you could help. You were my last hope. God knows why I had that idea in my head, but I did. And when you passed me off, I felt  broken beyond repair. I thought something was so wrong with me that I could never be fixed.

Eventually, of course, I got a proper diagnosis. The symptoms that at times resembled ADD could all be attributed to Asperger’s. Now it wasn’t until years later that I discovered my parents had mentioned Asperger’s to you. You dismissed them. Now, I don’t fully blame you for this. I’m sure you had plenty of parents who diagnosed their children on the Internet. I’m sure you heard all sorts of ridiculous things, and there’s the possibility you just started tuning it out. I wouldn’t blame you if you did. But you couldn’t have known how much effort my parents put into researching my problems.

During this whole time, I was never mad at you. You were lumped in with a variety of psychological professionals who did their best. No, I wasn’t mad about you until we got the letter. Until we learned you were getting paid to run clinical trials of that medication. That bothered me. Because how, when I thought about, how couldn’t you have known? Asperger’s wasn’t the most well-known diagnosis at the time, but you were a child psychiatrist. You should’ve known. You should’ve known my symptoms didn’t line up with ADD. But you prescribed me that medication anyway. Then, when it became clear it wasn’t helping, you passed me along like so many other doctors had.

I’ve become less mad at you while writing this. In a way, that experience helped to make me who I was. Still, of all the experiences that shaped me, if I could go back I’d skip that one. But it’s too late now, and all I can do is try to find some good out of it.

If anything, I hope someone else can read this, someone who had a similar experience. Someone else who may need healing but might not realize it. I want you to know you’re not alone, and that it wasn’t your fault.

Doctors don’t know everything, no matter what they may make you think. Doctors are human, and they can make mistakes. Sometimes they may not have your best interests at heart. But this is not a reflection of you. It’s a reflection of them. Don’t ever forget that.

A photo of Sarah wearing a red t-shirt
A photo of Sarah wearing a red t-shirt

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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The Real Reason Behind My ‘Ellen DeGeneres Show’ ‘Obsession’

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People who know me are well aware of my love of “The Ellen DeGeneres Show.” When I give out my phone number, I make sure to mention that I won’t answer when the show is on. (I don’t have a DVR.) Some people have even called me Ellen by mistake, although I take that as a compliment. But there is a reason behind my Ellen obsession, and it may not be what you think.

One day, not long after I was diagnosed with Asperger’s syndrome at the age of 15, when I was struggling in school, I came home sobbing. I’d had a more difficult day than usual. So my mom told me to go watch “The Ellen DeGeneres Show.” I sobbed over to the TV and turned on her show. Less than a minute into her monologue, I began to smile. Then I was laughing. And soon, I was laughing so hard that I was crying again.

It was at that moment that I knew I would be OK in life. I could survive school, bad days, and even this diagnosis that I didn’t really understand at the time. In those few seconds of an emotional roller coaster ride, the show had already made an impact on my life.

I found comfort in the routine of watching the show every weekday. I enjoyed the sense of humor that seemed to lack any amount of hatred towards others. Each day was rewarded by this show that brought me happiness.

As I have grown older, I’ve continued to follow the show. I still watch it daily. Only now I watch it while wearing my Ellen hoodie (I own three of them!) in my own apartment. I use an Ellen-themed token board with letters of her name for the tokens, to reward myself for doing things that I find difficult. (The final reward is seeing her name fully spelled out with the tokens!)

When I struggled to attend college, I found out Ellen dropped out of college. This didn’t discourage me from attending (I’m in college now!), but it helped me to realize it was OK that I couldn’t at the time.

So, while this whole article may just seem like a person with an obsession writing (and it is), it’s also to highlight the moment I realized I would be OK. Someone else who has become a major success despite (or perhaps because of) her differences made me feel less alone.

Erin’s “Ellen” themed token board

Lead photo source: Screenshot from YouTube video

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A Christmas Gift for My Mother on the Spectrum

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It was almost Christmas Eve and the presents were all wrapped and under the tree. But I found myself at a loss as to what to get for you. A new purse, a book, a gift card – perhaps. Or what about this:

When I look back on my childhood I often think of the difficult times like when your migraines were bad, or that time you got called for jury duty and the time the one side of your body was partially paralyzed and they thought you had multiple sclerosis. I think about how even good events were often so difficult for you. There were things that could throw you into a fit – the wrong creamer for your coffee, the color green and the coffee at a certain fast food chain. There were many childhood events you weren’t even a part of – due to it being too cold, too noisy or too crowded.

But if I take an extra moment, I can now see the good things. The hot chocolate you would make for us to take when Dad took us to skate, toboggan or to see the Santa Claus parade.  Showing me how to make cookies at Christmas. Making sure to have family gatherings (with your seven brothers and sisters) even though the noise must have been overwhelming. Volunteering at my school when my anxiety was really high and I needed to see you. Volunteering to be a Girl Guide leader when my anxiety was so bad I stayed in the bathroom for most of the gatherings until you began to come.

I think about the Christmas you and Dad must have scrimped and saved to get me the electric organ I so desperately wanted along with music lessons. We didn’t go all out at Christmas, but I was never disappointed either.  I remember you reading to us from our children’s Bible about baby Jesus and the manger every Christmas Eve. But most of all, I remember the tuck-ins to bed and the reassurance that Santa would soon be on his way.

All of this means even more to me now since we found out that much like your grandson, you have Asperger’s syndrome. It means more to me that you sacrificed in the ways you did. That you were able to take care of yourself as well as us in the best way you knew how while living in a world that knew nothing of your as-of-yet-unidentified diagnosis.

Know that we see you for who you are: a flawed but fabulous wife, mother and grandmother to an unruly bunch who love you madly.

Merry Christmas, Mom.

Tina and her mom
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What This Boy With Asperger’s Wants to Tell School Bullies When He’s an Adult

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Devin Smyth recently wrote a personal essay about growing up with Asperger’s syndrome, titled, “My Reality and Some Fantasy.” This week he read it on CBC Radio One.

“I have been teased a lot by boys who don’t get me,” Devin, from Lethbridge, Alberta, said. “They mock me or laugh at me… This is the worst thing about Asperger’s.”

But the 11-year-old has a cheeky message he’d like to tell his bullies when he’s older:

I know I will be rich someday and do lots of cool work, like helping poor people and design cool clothes for movies or invent cool technology. Then when the kids who have been mean to me want to take advantage of me, I’ll say, “Sorry suckers, you had your chance.” And my pretty wife and me will drive off on our yacht to see my mom, and maybe dad if he’s still alive, at her nice old folks home I will buy her in Hawaii. The end.

When asked if he had anything else he’d like to add, Devin paused for a moment and then said, “Asperger’s is not a disability, it’s not a punishment, it’s not something wrong, it’s not something to be made fun of.”

Listen to Devin’s full interview below:

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