How My Senses Work as Someone Who Is Autistic

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It’s true what they say, when you’ve met one individual with autism, you’ve met one individual with autism.

The autism spectrum is wide and no two people with autism are alike. I always fear when someone asks me what autism is like, I’m going to create a certain “guideline” as to what it’s like to have autism for the person who asked.

People’s challenges with autism vary. I can only tell you about what autism is like for me, mainly focusing on sensory issues.

Touch, smell, taste, hear and see.

I personally lack taste. There aren’t many things I can actually enjoy when it comes down to food. For me, it’s more the textures, this is how I decide whether I enjoy something or not. For instance, mangoes; I like the texture of mangoes so I have quite an obsession with the fruit as well as the fresh juice. I don’t like the texture of tomato, soup, mushrooms, etc. So I tend to avoid these foods.

My sense of smell isn’t great either. I enjoy lighting candles and the wax melt, but for me to be able to smell these smells I have to light six to nine of the same candle. Whereas most people can smell things like garlic, bleach or candles, that’s something I can’t detect myself.

My sight is quiet sensitive. Bright lights physically hurt my eyes and head. I’m not just talking about the sun. Some days, while outside may look quite dull, it’s still too bright for me, which means I still need my sunglasses. It causes physical pain for me.

Sounds are awful. I walk into a shop and I hear everything! I can hear the cashier counting coins, the plastic bags moving around, the wheels on the pram squeezing, everyone’s conversation around me, someone scratching their head, the humming of the lights, children screaming and the self-service machines telling people to please collect their items or that there is an unexpected item in the bagging area. The worst thing is, they are all at the same volume for me.

Touch is a strange one for me. Sometimes if someone comes up to me and shakes my hand or pats me on the back, it’s like a burning sensation. Especially if I’m not expecting it. I’m currently going through physiotherapy after a recent car accident I had and throughout the whole 30 minutes of my appointment it feels like someone has put a boiling hot water bottle on my back without the fabric cover on. It hurts.

Not only do I have sensory issues, here’s just a few examples of some of my other struggles:

  • Social communication.
  • Difficulties reading facial expressions.
  • Trouble making eye contact.
  • Difficulties viewing others perspectives.
  • Difficulties understanding sarcasm.
  • Fear of change.
  • Obsessive behavior like cleaning.
  • Like to learn facts and figures.
  • Speak fluently but continue to speak on about a particular subject.
  • Inability to cut out sounds.

Not many people understand autism. I don’t believe people ever will unless they live with it themselves. I get told “you don’t look autistic” or “you can’t be autistic, you’re talking.” Autism is a invisible disability for me. You could walk past me on the street and have no idea I have autism.

Everyone with autism is unique. We all have our different struggles, we all have our sensory differences and we all have our different coping mechanism.

What we do have in common is the gift of autism. The gift to see the world differently. Even though, in my opinion, having autism is a real struggle for myself, I wouldn’t change it. It’s made me who I am. Autism doesn’t define me, but it sure as hell plays a big part in my life.

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10 Lessons in 10 Years From My Son on the Autism Spectrum

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​My son, Ryan, was diagnosed with autism 10 years ago. Ten years, it doesn’t even seem possible. In some ways, it feels like a long time ago and in some ways it feels like just yesterday I was sitting in that psychologist’s office wondering if her garbage can was full because I felt I was gonna puke in it.

Ten years — it’s a lifetime, it’s a blink.

I remember the years of worrying, Google obsessing and watching for every single sign Google told me to look for prior to that 10 year diagnosis. Why is he doing that? Why isn’t he doing this? Why, why, why? Little did I know all those question would be answered with a six letter word: autism. And those six letters would have an impact on him and on me I could have never guessed 10 years ago.

Ten years — it’s a lifetime, it’s a blink.

There are still days I ask “why,” but mostly I ask “what.” What do we need to do to get from here to there? What supports need to be in place to help him succeed? What can I do to help him succeed? What does he need to do for himself to be successful? What can we do to help others? “What” can sometimes be as difficult as “why,” but I have learned after 10 years that many of those answers are up to him, and that has been a tough lesson for both of us to learn and accept.

Ten years — it’s a lifetime, it’s a blink.

These past 10 years, Ryan has come far and so have I.

Here are 10 things I’ve learned these past 10 years while loving my child with autism:

1. It’s not about me.

Sure, his autism has an impact on me and our family, but what he needs, what he wants, what makes him happy is about him, not me.

2. It does matter that you call it autism.

For years I had therapists say, “It doesn’t matter what you call it, just getting him the support is what matters.” I have learned that what you call it is exactly what helps get supports started in the first place. So yeah, it does matter what you call it. More importantly, one day it will matter to him what autism is and give him a better understanding how it has impacted his life.

3. What matters is how he defines the word “friend.”

4. “Different, not less” is true, but you have to see it, feel it and believe it.

5. The debate over “a person with autism” or an “autistic person” is not up to me, you or the autism community, it is up to each individual with autism.

If an individual with autism is able to tell you what they prefer, ask, don’t decide for them.

6. Alone and lonely are very different.

It may depend on the day, the moment and the circumstance. The only way to know, is to ask.

7. “Lack of displaying emotions” or displaying emotions in a way you don’t expect, does not mean someone with autism is “lacking” emotions.

How those with autism demonstrate and display their feelings may be different, but their feelings are never less.

8. Never say “never” and never believe anyone who tells you “never.”

I mean it, never.

9. There are many beautiful ways to communicate feelings without ever uttering a word.

10. Autism is not a one way street.

It is not only the job of autistic individuals to learn how to adapt to “our” world, it is also our job to understand and accept that although individuals with autism may see and interact differently in “our” world, they are just as entitled to be a part of it — free of judgement and condemnation.

​Ten years — it’s a lifetime, it’s a blink.

I never found out if that psychologist’s garbage can was full or not 10 years ago, because although I felt like puking, I didn’t. I guess somewhere, my heart took over both my brain and my stomach and realized my son needed me more than my churning lunch needed to see the light of day. That’s not to say there weren’t 10,000 times where I failed him, where I was selfish, misguided, tired and just plain wrong. But he always brought me back. He always guided me to where he needed to go next, just as I know he will in the decades to come with 10,000 more lessons to learn.

I look forward to learning more as this teenage boy transitions to adulthood, while I watch this beautiful transformation with an open mind and an open heart. Thank you, Ryan, for ten AWEsome years, and here is to many, many more.

Ten years — it’s a lifetime, it’s a blink.

I think I will try and prop my eyelids open for this next decade.

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What the Diagnosis of My Son on the Autism Spectrum Means to Me

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There it was in black and white. It wasn’t a surprise — in fact, it was what I’d been suspecting for years. Still, on paper it looked so official, so permanent, so undeniable. Autism spectrum disorder, level one. Before the diagnostic label changed, this would have been called Asperger’s syndrome. The diagnosis specified an exclusion of verbal or cognitive delays. It’s all very clinical. Except it’s not. It’s my child.

He’s the same child he was before the diagnosis, but I’m not the same parent. We came to this diagnosis after a seven hour and two day psychological evaluation. I know some parents with children on the spectrum who can pinpoint an age where their child changed or regressed, a time when they began to notice something was a little different. I can pinpoint this time to when my child turned 3. I used to joke he bypassed the terrible 2s and became totally different at 3. Except it really wasn’t a joke. Of course, the question even science cannot yet answer is, what causes autism? Is it linked to the mysterious week long high fever my son contracted two weeks before his 3rd birthday? Is it genetic, biological, or both? Is there a causal relationship between autism and vaccines or diet? I can’t answer any of these questions, and if I have learned one thing through curve balls in life it’s to make peace with not knowing. It’s human to want answers. When we know why something happened, it is easier to wrap our heads around it. In reality, not everything has a discernible reason.

I will most likely never know the why of my son’s autism, but I know what to call the traits: the non-stop talk about obsessive interests, the difficulty reading social cues, the separation anxiety, the sensitivity to smells and noises, the rigidity and the overwhelm. More importantly, I also know my son, who can’t be summed up on paper. The boy who insisted on using his own money to buy his brother a birthday present. The boy who is incredibly smart, who can tell you all about garbage and recycling, and more recently, Kidz Bop and Taylor Swift. The boy who is fiercely loyal to his friends and does not hesitate to stand up for a classmate being picked on. The boy who asks if we can learn about undertows in school this week. The boy who has an impressive degree of self awareness.

Sometimes, when he is still awake two or three hours after being tucked in he will tell me, “Mom, sometimes my mind gets the best of me. It’s like a computer with pictures in it and the pictures keep coming up on the screen.” I am glad he can explain this. This is the same boy before the diagnosis.

So what does a “label” mean, exactly? The very use of labels is controversial. Despite efforts to raise awareness, there still exists a pervasive belief that autism is nothing but the latest fad label. Awareness of the spectrum is limited. Some people have an image of autism as a kid who can’t communicate at all. Some have an image of a “quirky” genius. Autism can be both of these things and neither of these things; the autism spectrum is everything in between. The saying goes, “If you’ve met one person with autism then you’ve met one person with autism.”

Why the label? The diagnosis is a tool. The diagnosis tells me not only the what but the where and the how. I know where to turn for support, resources, and the therapies that will help my child — and us as his parents — manage his struggles and build upon his strengths. I know how to understand his beautiful mind a little better and I know how to meet his needs. Not entirely, of course. Not perfectly. But better.

We have decided to continue homeschooling, gradually increasing the hours he spends at the school he attends for homeschooled children. The teacher and administrators have already been wonderfully accommodating, intervening promptly and effectively when he was having difficulties with a classmate, allowing him to choose not to participate in recess and allowing him to participate in the chapel with fewer children when the all-school chapel was too loud and overwhelming for him. The latter two accommodations were made without me asking. The small classroom of only nine kids and the small lunchroom allow him to be more comfortable, but still challenges him to function socially and within a group.

He is also in an environment where his individuality and needs are respected, which is the best way for him to learn. He will also begin participation in a social skills group and take classes at the local public school. His IQ tested in the 94th percentile, so we are hoping to get him in some advanced classes that meet his need to be challenged and his comfort level. Finally, we are working on visual schedules to help him with transitions. He does best when he knows what to expect and has some control over his environment.

When he is old enough to understand, we will tell him about his diagnosis because it is nothing to hide. We never want him to feel ashamed. It will be up to us to explain what it means.

He has difficulties that many people don’t experience, but he also has a unique way of seeing the world. He can understand things others cannot. He feels more deeply and thinks more intently, which means his lows may be lower but his highs will also be higher.

When he’s old enough, I plan to have him volunteer with me one Saturday a month when I work with kids on the spectrum. I believe that God calls us to use not only our gifts but also our struggles to help others. I want him to use his unique mind to understand and reach out to other kids who might be struggling, or might not seem to fit in.

As for me, I learned to always trust my parenting instincts. When my son started kindergarten at 5 I saw him sitting in the lunchroom with his hands tightly over his ears and tears rolling down his face while kids talked over and around him. I saw the teacher carry him into the classroom when he was upset. I listened when he begged me not to make him keep going to that school. I listened to my instinct and to my child, not to the “experts” who told me, “Oh, Mrs. Clark, kids do this. He’s fine. He’ll adjust. Maybe you just need to learn to let go?” Or maybe my child is on the spectrum and cannot handle a noisy lunchroom, or a crowded classroom or a long school day. I tried to tell myself it was just a phase, he was just young, things would work themselves out, but I didn’t believe it. As a parent, you know your child. If you know in your gut something is going on, don’t let the word “just” enter your vocabulary. You are the first expert and only advocate for your child. Trust yourself and trust your child.

If you are a fellow parent of a child on the autism spectrum, I can’t tell you why your child has autism, but I can tell you why your child has you: because you are the best for them. You are the perfect person to love them, struggle with them, fight for them, guide them, and sometimes just fumble through the dark with them.

If autism is not a part of your life, I simply ask you to understand there is no single picture of autism. The child in the grocery store who seems too old to be acting a certain way might be on the spectrum. So might the cashier. By the same token, a child on the spectrum may appear to be no different than any other child, but this doesn’t mean the diagnosis is any less legitimate. This same child may go home tonight and refuse to sleep until all of his money is counted and he had read no more or less than three chapters in his book. If you’ve met my son you’ve met an intelligent, empathic, loyal, intuitive boy who will talk your ear off about Taylor Swift and Kidz Bop. You’ve also met only one person with autism.

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My Son on the Autism Spectrum Taught Me Each Child Is Unique

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My son is on the autism spectrum.

He is clever. He is a starter and finisher which is great in a classroom environment. He needs to complete what he starts and has always needed to do things well. He has high expectations of himself and wants to please you.

My son loves other children and likes to play structured games over and over again. Play chase with him and he will be happy all day, play video games and that’s even better (as long as you stick to the rules). My son loves to run and will circle the park over and over on foot or scooter, he will include anyone who wants to play in his game. He is social.

My son is a sensitive child. He is an empathic friend.  If he sees you crying he will ask if you are OK. He is not mean and does not pick on children who do not fit in.

My son has the fundamental skills needed for friendship but misses the subtleties in communication. He may not pick up on your tone of voice or he may misread your body language. He does not understand flexibility within rules or why they change from place to place. This is not obvious by looking at him. When he is playing, he does not stand out. You need to know my son well to understand the difficulties he has.

My son makes friends easily but sustaining friendships is difficult. To look at him you will see how socially interactive he is, he pursues friendships and will include people in his games. He is great at turn taking. But he is also incredibly sensitive, which stands out for a 7 1/2-year-old.

When the world around my son  seems unpredictable and overwhelming, he doesn’t know how to respond. Sometimes if the environment is too busy or noisy, this can upset him, too. This can socially isolate him from his peers and make him stand out as different.

If a child has a diagnosis of autism, please understand there is a reason for the diagnosis and the child needs additional support and understanding outside of what a typically developing child may need.

My son’s behaviors may be mostly socially “normal” and he is a very bright child who learns easily and wants to achieve. My son’s autism may not look like what some people picture as autism. But I assure you, there is no “typical” in autism. Each child is unique and full of capabilities. Each child deserves support and each child needs understanding.

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A Mother's Day Shout-Out to Moms Loving a Child on the Autism Spectrum

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Ahhh…it’s almost Mother’s Day. That magical day when the Fairy Godmother shows up and grants mothers their three favorite wishes:

1. Sleeping in
2. A washing machine that cleans, folds and puts the laundry away
3. Wine that comes out of the kitchen sink

Oh, if that Fairy Godmother would just show her a** up! Despite her lack of attendance, many of us moms will still have a special day. Twenty-four hours dedicated just to us! A day filled with extra hugs, homemade gifts and reminders from kids, young and old, why we are fortunate enough to celebrate this day, even without our Fairy Godmother and her magical wand.

All moms deserve to be celebrated today and every day. We love without condition, we give without exception and we educate without a lesson plan. Yeah, we totally deserve this day!

Although, I want to wish all moms a Happy Mother’s Day, this is a special Mother’s Day shout-out to all my mom club members loving a child with autism. Our love is as exceptional as our kids.

So, Happy Mother’s Day to the moms who have walked in our shoes, shared our fears and celebrated our kids’ accomplishments! These are just a few reasons why I think even without that overrated Fairy Godmother, you are AWEsome and so deserving of a day to celebrate you:

For making the same breakfast, lunch and dinner every single day and stockpiling all the ingredients it takes to make that same breakfast, lunch and dinner every single day.

For writing letters, sending emails and calling the CEO of Nabisco, Keebler or whomever, begging them to bring back your kid’s favorite snack that they stopped making because clearly these CEOs have no idea the peril and disruption this decision has had on your kid (and on you).

For the endless hours spent finding just the right _______ (insert almost anything here such as socks, shoes, coats, pants) that your child will tolerate and your dogged determination to know that eventually a certain brand or style will work and praying they never, ever change that brand or style once you find it and your kid wears it. (See number 2 if this unfortunate event occurs. It will.)

For the ability to foresee a change in routine or schedule as often as you can, so you are able to do whatever it takes to make sure that change does not disrupt your child’s routine and ruin his or her day.

For doing what you can to make sure your other children know that their struggles, heartaches and triumphs are no less important than their autistic sibling’s.

For putting on your armor and taking on ignorance regardless of what form ignorance may come in…family members, bullies, teachers, or the person in the checkout line at the grocery store.

For taking on the job of advocate and educator so ignorance has as little of an impact on your child as possible.

For your ability to see the world through a different perspective and appreciate the view even on the cloudy days when visibility is low.

For getting there, no matter how long it took, to understand and believe “different, not less” because now, thanks to you, your child does too.

For being there. Always. Without question.

For being here. For getting it. For your child and the next.

Thank you, AWEsome moms.

We are a pack of lionesses, a den of mama bears, a club of moms who will stop at nothing, not even on Mother’s Day, to advocate, fight and show the world the AWEsome contributions our children can make if given the opportunity, if given a voice, if given acceptance.

Happy Mother’s Day. Even without that Fairy Godmother and her magic wand, you can, and you are, making wishes come true.

Follow this journey on The AWEnesty of Autism.

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To the Single Parent With a Child on the Autism Spectrum

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I am one of you. I see you at the autism support events, alone with your child trying your best to keep them calm and engaged in our group activities. I talk with you all the time online, giving each other encouragement and support, knowing this world can be a tough one, especially if you don’t have support. I see you in my daughter’s classroom. I am one of you, and I want to say these things to you…

You are amazing. You have courage and strength within your heart, and you make sure your child is taken care of. You do it alone, and that takes a lot. Your little one may not be able to tell you with their own words how much they appreciate all your patience and love but I believe they feel it. You advocate for your child, and you make sure people listen and learn about autism. You are a hero to me, and you should carry your head up high because you are doing this all on your own.

It’s OK to feel lonely and be scared. I can’t even begin to say how many sobbing sessions I have had in the shower where no one can hear me. How many sleepless nights I have spent worrying about her future, wondering if I am doing enough. Am I doing enough? Did I harm her by not being able to provide for her a traditional family unit? It’s in these moments of weakness that I remember the greatest power we carry as human beings is love. That’s all she asks me for, and that’s what I have a surplus of within my heart. I may not have a partner to hold me at night and tell me it’s OK, but I have my beautiful children who give me unconditional love, and they carry me through any hardship I may encounter. I give them my best, and I know they are the fuel I have every morning to continue to work hard to give them a better life.

Find your support network and learn to rely on them. I am lucky enough to be surrounded by the most supportive and loving family in the world. My friends could not be more loving towards me, and they have really helped keep me encouraged and focused throughout my journey. Divorce and my daughter’s autism diagnosis came at the same time in my life, and I can honestly say I don’t know how I would have made it through without my family and friends. I had to learn to reach out when I felt overwhelmed and be honest about my feelings. To ask for help when I couldn’t handle the day’s challenges. Online support networks have been so positive in my life. I have met incredible friends through them and I love seeing their kids’ pictures come up on my social media feeds. I’ve learned valuable lessons from them, and I know I am not alone on my journey. There are people in the world who understand and care; don’t be afraid to find them and rely on them.

Enjoy all the little things, every milestone met, every quirk your kid may have, every smile, every hug. My daughter is the happiest little girl you’ll ever meet. She fills my days with renditions of her favorite Disney songs, belting them out to the top of her lungs. I recently taught her how to give eskimo kisses, and on my tough days, when she brings her little nose to my face, I just know we’re going to be OK. I don’t have all the answers; I’ve learned that I just need to take my life day by day. Every time she learns a new word or expression, we have a huge celebration in our household. She has brought a type of love to our family that is fierce and full of joy. So, even though I may be a single parent at the moment and not have someone to call my love, I am not short of it at all. My world has become a beautiful place of learning and growth.

So from one single parent to another, let’s go forth and conquer the world with love and advocacy for our little ones!

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