Rachel and her daughter holding hands.

5 Things I Want to Tell You as a New Parent With Sensory Processing Disorder

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Half a year and a lifetime ago this week, our strong, clever, curious, gorgeous little daughter was born. I was at the time – and I still am – a mom who set out on the journey of parenthood knowing that I was wired differently. I have sensory processing disorder (SPD), a neurological condition that impacts the way my brain makes sense of sensory information. You might say I’m sensitive and quirky, often picky and rigid, and you’re absolutely right. I live with some special challenges. I’m also a wife, a daughter, a sister, and a friend. I’m an award-winning author and I’m an advocate for the SPD adult community. For the past six months, I’ve also been a mom with SPD. Clearly, I refuse to let a neurological difference be the reason I don’t get to follow at least some of my dreams.

That being said, parenting with SPD isn’t for the faint-of-heart. While most of what my husband and I have collectively faced falls within the realm of typical new parent drama (baby won’t poop, baby won’t stop crying, baby keeps teething), my experiences of new motherhood, through a differently wired system, have made for an especially unique six months.

Here’s what I’ve learned.

1. Parenthood is complex. Parenthood with SPD is also complex.

For the most laid-back, unencumbered individual, parenthood is still a complicated proposition. Here, it urges you, this is a brand-new person with your eyes and your partner’s nose. Go and sort out how to keep them not only alive but thriving. They can’t tell you what they want or need yet, and oh yes, you just pushed them out from between your organs, but quickly, go and figure out how to parent them.

And then imagine being the parent whose sensory system sometimes just shuts down from overload. Envision losing the already tenuous connection between your hands, your wrists, your body, and the outside world, and place your child – your heart beating loudly outside of your chest – in those disconnected hands. Try to see, through your eyes that sometimes just don’t process visual information correctly, their tiny chin dimple and the trickle of drool that needs wiping. Try to calmly change a diaper while making soothing vocal intonations as your baby shrieks and your senses overload. Try to swivel your baby carriage down a busy sidewalk with those same challenged eyes and ears and proprioceptive system while keeping your baby safe and upright. Don’t cry at the first stranger who surprises you from behind to complement one of the greatest loves of your life. Some days it’s especially weighty to tote around a growing baby and a lifelong neurological diagnosis.

2. Self-care is critical now more than ever.

Back before our daughter arrived, my self-care routine was extensive. I rested for many hours a day. I soaked in a tub filled with lavender oil daily. I did Yoga Nidra and visualization techniques. I deep-breathed like it was my second job. These moments of self-care enabled me to stay above my intense anxiety (a secondary perk of SPD), and often gave me the calm I needed to face my sensory challenges.

These days, my definition of self-care has changed. Closing my eyes for a half hour has become a precious gift. A deep breath or two before bedtime is now luxurious. I took a shower by candlelight a few weeks ago, and I swear it was like I’d spent the day at a spa. These moments, sadly sometimes few and far between, are pivotal to my well-being as a parent with SPD. It’s like what they tell you during airplane safety protocol presentations: you need to put on your oxygen mask first before helping anyone else. My time is limited, but I never regret carving out a few minutes to
revitalize. The better rested I am, the better I feel, and the more I can fully engage with our girl.

3.We’ll still have meltdowns and shutdowns, and we’ll survive them.

About a month ago, I found myself sprawled out across our bedroom floor, sobbing. I was under-slept and over-extended that day, and between the peek-a-boos, the assisted walking, the nursery rhymes, and the pained, wrenching whimper of a baby mid-teethe, I’d lost my poise. I felt the dark, heavy cry of a meltdown on my emotional horizon, so I handed our daughter to my husband, retreated to the dark, cool calm of our bedroom, and pressed my entire being against the floor as I began to sink into a full, tearful sensory meltdown.

I emerged about a half hour later dazed and frayed, but alive and functional. Our daughter erupted into a wide smile as I walked back into her bedroom, none the wiser of my complete albeit temporary loss of composure. My husband, ever the Handler as we call him (he’s able to handle both me and my sensory needs like an expert), gave me a kiss, and we continued on with our evening. Meltdowns and shutdowns are just part of the SPD package – survivable even after becoming a parent.

4. People with SPD make amazing parents.

People with SPD are often sensitive and intuitive. We care deeply about the human experience because we know all too well how it feels to be misunderstood, uncertain, and anxious about living in the skin we’ve been given. We’re open to differences because we, ourselves, are different. We’re often eager to be supportive, as the support and love from others have helped us get this far in our lives. We live in a world that isn’t built for us, and yet we can be creative enough to find ways to live well within our parameters. We’re some of the strongest people you’ll ever meet. Who wouldn’t want us for parents?

5. People with SPD are deserving of love and family.

I know there’s always an underlying question in the SPD adult community of what do I deserve?  Those of us whose diagnoses were delayed have often wasted many years feeling ashamed and guilty for our differences. In many cases, we’ve felt like burdens to our family and community purely because no one truly understood our needs, not even ourselves. Even after diagnosis, we may still habitually apologize for being who we are. It’s hard, then, to think that we’re worthy of basic human rights, like love… but my friends, we are. We deserve the things we want from our lives. We should stop punishing ourselves for how we’re wired. Our differences can’t keep us from finding our own, unique ways to meet our goals.

I always knew I’d be a mother someday, but as our daughter’s due date grew close, I began worrying that I’d somehow let her down because of my sensory sensitivities.

Listen. I may never be the mom who sews clothing in the theater wings while my daughter sings the lead in a school musical. I may never be the daredevil mom who picks her kids up from classes one day, pops them in the back of the car, and announces, surprise road trip amidst excited squeals. I suspect I’ll be a different mom. I’ll be the mom you confide your innermost secrets to because you know she’s not here to judge. I’ll be the mom who throws cupcake parties and is especially adept at a good movie-watching snuggle. Mostly, I’ll be the mom that is the most herself: open and honest, a fervent champion and cheerleader, a haven of safety in a world that never feels entirely safe to her.

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The Small Things I Do to Be Brave With Sensory Processing Disorder

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I went to the university accessibility center recently. After some nudging from a friend, I went and made an appointment and the day came. There are small things I do every day that mean I am brave. This was my thing.

I sat across from Clay and tried to relax enough to piece together an adequate picture, so he could help me understand whether or not I deserved assistance. We spoke for quite a while and much of what I’ve been feeling lately came out. He was responsive and attentive and helpful. We neared the end of the session, and I was feeling edified when he smiled at me and said, “I want to tell you how truly lovely it has been to talk to you today.”

I kind of half laughed, knowing he couldn’t have really meant that me crying and trying to explain what it means to have sensory processing disorder. So he got serious. And then nearly the exact same thing my counselor has said to me time and time again came out of his mouth: “You are lovely and mature and conduct yourself with poise and grace.” He said he never would have guessed when I walked in what was happening inside my head, and what horrendous things my brain is telling me. He told me how impressed he was that I had everything thought out and mapped in my head, analyzed and processed. Then he told me I was eloquent. So I just stared at him and felt the tears well in my eyes.

Because somehow I am all those things and there are still days I cannot bring myself to put my shoes on.

I can’t say I know how it works. The fact that he repeated this like my counselor had scripted it startled me. As I left, I began to process what he had said about how I felt. Sometimes it really is helpful to have someone express your ideas back to you. Sometimes it is enough to have someone look at you and say, “It’s OK if you need help. You deserve some help. And I can offer it.” I couldn’t be more grateful for the experience I had today.

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What 'Tunnel Vision Effect' Is Like for Me as Someone With Sensory Processing Disorder

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Puzzle Pieces: It’s OK not to fit perfectly in this world, even if we want to be liked by everyone or to be “normal.” Be you, not what others expect you to be. People need to be willing to better understand us, and maybe that’s when their and our puzzle pieces perfectly align together. We are who we are, we fit perfectly in our own puzzle pieces. — Sara

“Tunnel Vision Effect”

I realized I can’t be out with so many people as I get what I call “tunnel vision effect,” and I’m unable to figure out what I (or Rufus my service dog) need, or how to communicate effectively to ask for help, under this effect.

It appears I look OK, externally, though internally I’m falling apart, into more broken puzzle pieces, but holding it together.

I wear my noise-canceling headphone when I venture out by myself or with friends. Some days I don’t need to wear it, but other times I do wear it as I know the places I visit will be loud. The noise-canceling headphone does help with external chaos at that moment, though my brain and body don’t react well when I get home from being out. I hold all my things together in public, but as soon I get home, I unravel faster than dripping water. No one sees me experiencing my falling apart for two or more hours at home.

I shut the world out while I’m stuck in this tunnel vision effect. I don’t let anyone into it, until now.

I have sensory processing disorder.

Here’s an example, in my own words or observations. I’ve been keeping track as I’m out with more than five people:

If you are in a group of five or more people (animals excluded), that’s what you might see in front of you and me. I see the same amount of people.

But this is where my perception changes for me internally: I see five (or more people), though multiply that to 100 to 500 (or more people). That’s the “tunnel vision effect” for me. Even though there is the same amount of people in front of you and me, internally I see more “people.”

Tunnel vision effect for me: Everything and everyone are moving so fast, even though everyone is sitting, standing or walking at a normal speed.

Then, let’s throw in people talking to each other into the mixture. It doesn’t matter if the individuals’ voices are loud or soft, near or far — everything is jumbled to me.

A train passing by you as you are trying to listen to the music on the radio. It cuts in and out, you feel the vibration of the train, and you see the rush of the train passing you.

I’m OK being out with another person or two, but if there are more in our group or strangers doing their own thing, I still experience what I call this “tunnel vision effect.”

I had the same experience when I took Rufus to MadeAllLocal event last weekend. It was a great experience to do this by myself. Yet, it was hard as I came to realize that I struggle staying focused, not veering into the tunnel vision effect.

I have been keeping track (documenting) when this “tunnel vision effect” occurs for me to determine the best way to cope or plan a way to ask for help.

I don’t enjoy it when I’m in this mode because it affects Rufus greatly. Yes, he’s a puppy, still in training, learning what he needs to do. But, again, he’s still young and we are figuring this aspect of training together. I get in this “tunnel vision effect,” and I’m unable to give him a verbal/physical command/task for him to jump on me.

This is where I need to figure a signal for him to watch for my nonverbal cues when I’m able to verbalize a task or commands to him. Rufus has instinctively taught himself to interrupt me when I start hitting myself in the head or face. Rufus will immediately jump onto me (even if he’s across the room) to help me redirect my focus onto him. Instantly, my mindset is redirected in a positive manner to focus on him. Rufus is extremely attuned to my emotions, and since September 2016, hitting myself has decreased along other issues I experienced.

This is what I experience not every day, though the majority of the time.

Rufus is excellent out with me as we go to many appointments throughout the week or visit stores that aren’t busy with many people.

This is my tunnel vision effect.

“Sometimes, we only want to see what is occurring in front of us, not what’s occurring within the person’s psyche or body. We can’t truly comprehend how they perceive the world or how their body reacts. Nevertheless, we can try our hardest to lend a supportive hand. To have someone understand a little is a step in the right direction for the future.” — Sara

Note: I have been training service dogs for clients. Now, I’m training a dog, Rufus, to become my service dog to assist me with my daily functions.

Sara with her service dog Rufus in front of a store aisle

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How I'm Learning I Can Be 'Perfect' With Sensory Processing Disorder

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There is a famous video in my family, taking place at my first birthday. A beautiful summer day with people milling about the pool, a table of presents, and me, big cheeks sitting in an old wood high chair that had kept many babies out of their mothers’ hair. It still sits in my grandmother’s house, unused with a china blue pillow and matching rooster perched as guard. For my birthday, it was cleaned and sanitized in the expectation of my first time eating cake.

I’m sure my mother had taken much pride in the balloons and clown decorations visible on the now deteriorating film. In the pictures, she has her hair curled and is wearing a dress, despite it being a pool party, and my father stands next to her in a coordinating shirt. My dress brought the whole ensemble together. Oldest child. First moments. Everything planned and prepared to perfection as only a new mother can do.

The cake was placed on the tray of my high chair and my parents waited in anticipation for me to explore the bright blue frosting and plastic clown. I’m not sure why a circus was the backdrop for my party, or if maybe it is now the reason why I resent clowns and find them repulsive, but my mother had gone through a lot of effort to put everything in place. The cake was the crown, a full circus of elephants and clowns and a ferris wheel perched atop all the frosting. Buttercream Bakery in Napa is still famous for their awesome cakes, and we get éclairs whenever we have the chance.

The anticipation was short-lived as my diaper-clad cousin crawls out of the pool, comes over and grabs a chunk of my cake from the tray and waddles away, shoving the frosting all over her face, a trail of cake behind her on the lawn. The camera goes back to me, tentatively picking at the opened cake, curious, but as soon as my hands are only slightly dirty I reach for my mother and begin to cry, begging her to clean my soiled hands. Now they say this should have been the first clue.

Sensory processing disorder refers to the way the nervous system receives messages from the senses and turns them into responses. Previously it was called sensory integration dysfunction. This disorder wasn’t recognized for a long time, and was mistaken for autism in many cases. It creates motor clumsiness, anxiety, depression, and school failure. 1 in 20 children is affected by sensory processing disorder, creating dysfunction and disrupting daily life.

Usually it is identified in children, but at age 19 I was listening to my mom talk to her best friend as they eyed her daughter tentatively stepping on the grass and retreating quickly to her mother’s side, complaining of pain. I’d never seen anyone react like I did to grass. I’d been told I was overreacting and being sensitive, that maybe I was allergic to grass and should just sit on a blanket or towel even though I explained I could still feel it. Kaye was telling my mom about something called sensory processing disorder, and as she described it, I began to identify with what she was saying: not being able to wear shoes with laces, certain clothes that were painful, food textures that made her daughter cringe and pull away, stepping on grass.

I pulled my mom aside that night, curling into my grandma’s couch, trying not to cry. She listened half-distracted by my sisters bickering as I explained to her that I too felt the way Kaye had described, but she didn’t understand. There were many parts I was missing, she told me. No struggles in school. No clumsiness. No excessive meltdowns. “There couldn’t possibly be anything wrong with you,” she told me, stroking my hair so it framed my face better. “You’re my Mary Poppins. Practically perfect in every way.”

A year later, I sat in a psychologist’s office, explaining how I wasn’t perfect, how I was having many excessive meltdowns, and I clearly must have been broken. As we explored my issues, he softly asked, “Have you ever heard of sensory processing disorder?”

Anxiety can be good for people. It causes fight or flight instincts to protect us from potential danger. Goals are proven to be essential for success. A thought-out plan is needed to move forward towards perfection. The way our bodies process the world around us is for stimulation or warning. But when any of these is thrown out of balance, the results can interrupt typical functions. Too much anxiety causes panic attacks. Too many goals can lead to an immediate need for impossible perfection. Too much stimulation can cause breakdowns, pain, misunderstanding, anxiety, tears, and therapy sessions.

I never knew before seeing a therapist that perfectionism was a disorder that could be diagnosed. But he nailed everything on the head as I sat perched on the edge of his leather sofa, refusing to take off my backpack because I liked the comfort the weight of it brought me. He said I have anxiety caused mostly by sensory processing disorder and perfectionism. When he asked me in one of our following visits how I got my idea of what perfect was, I looked at him and said, “Well, doesn’t everyone have the same standard?”

“But if you like causing trouble up in hotel rooms and if you like having secret little rendezvous. If you’d like to do all the things you know that we shouldn’t do, then baby I’m perfect, I’m perfect for you. If you like midnight driving with the windows down, and if you like going places we can’t even pronounce. If you’d like to do whatever you’ve been dreaming about, baby you’re perfect.”

One Direction is a band I’ve been addicted to since the summer after my first year at college. My sisters and I went through stages from what made us beautiful to all our little things that made us lovable, until this anthem of being perfect for someone without being perfect yourself. Harry Styles was telling me I could be perfect for him if I liked going places I couldn’t pronounce and if I’d like to write break up songs about him. But I couldn’t cause trouble. That couldn’t possibly be perfect. Breaking the rules didn’t make someone perfect.

I turned the music up until I thought my car speakers would burst and drove up the canyon, fighting tears. What did this word “perfect” even mean? I couldn’t possibly be perfect because I drove to the lake at midnight last night and thought about the lights across the water, pretending I was really on a Norwegian fjord. I couldn’t be perfect simply because I loved secret meetings, laced with darkness and thrills. There couldn’t be anything perfect about me because clearly I was broken. My body didn’t process a touch of another person correctly, let alone shoes or a blanket or certain kinds of rubbery grips on mechanical pencils. That’s messed up, I convinced myself. That means I’m broken, non-functioning. No matter what Harry tells me, I’ll never be perfect for anyone.

For Christmas, my parents invested in a weighted quilt for me. It’s stitched into squares filled with something that feels like the insides of my old beanie babies and covered in minkie, a fabric that not only doesn’t bother me, but calms me. My mother is finally finding acceptance after years of battling the idea in her head. She has stopped telling me how perfect I am and has started calling me “wonderful” instead. And now my sensory processing has become a joke instead of a disease. Just last week, as we were talking of some of my high school experiences and how I had never snuck out, my mother quipped that of course I wouldn’t. “That would be breaking the rules.” She laughed. “My kid who never breaks rules and doesn’t like dirty hands? Shocker.”

Having my hands dirty is an immediate need for my body to panic. One day in second grade, I was sitting and swinging my legs, watching some of my friends run after each other in some kissing game. I didn’t like running – I could fall. And I didn’t really like girls – they talked too much about shallow things and didn’t know much about Harry Potter. A girl with my same name marched up to me, and I stood, ready to run. She was the bully and I knew she had a reputation of pushing others so they ended up with skinned knees and nurse visits. I needed to avoid that at all possible costs.

Doctors didn’t scare me. Three of my four grandparents are doctors. What worried me was being dirty. I don’t remember what she said, or what she wanted, or why she was mad at me. But I do remember moments later sitting in the mud, trying to get my hands clean of the dirt without wiping my hands on the dress because that would just get the mud on my dress. I sat helpless, telling myself it wasn’t good to cry about mud, and remembering my mother’s insistence that anything could be cleaned. It wasn’t going to be the end of the world.

A playground aide saw me and came to pick me up. She thought the tears in my eyes were because I’d been pushed, so I nodded, zipped my mouth shut and let her guide me to the nurse where they let me call me mom to tell her what happened. “Please come get me.” I begged. “I’m so dirty.” She refused, saying the baby had just gone down for a nap and the aide would help wash my dress out. “Mom, please. Please come get me. I can’t be like this until the end of school. Please. I’m so dirty.”

My sisters and I went to a One Direction concert once as a surprise from our parents. We spent the day shopping for new outfits and listening to every song they had released. We had seen concert clips on the internet and knew the whole lineup. As the boys gathered on a flying stage, we all lifted up our cell phone flashlights and the whole stadium lit up with white light, the noise settling to a murmur.

The lyrics were written by Ed Sheeran and we had them written through our mind by the many nights we had fallen asleep to the acoustic guitar. “I know you’ve never loved the sound of your voice on tape. You never want to know how much you weigh, you still have to squeeze into your jeans, but you’re perfect to me… You’ll never love yourself half as much as I love you and you’ll never treat yourself right darlin’ but I want you to. If I let you know I’m here for you maybe you’ll love yourself like I love you.”

Perfect. With all their flaws, it was possible someone could be perfect and could be loved by someone else. My sisters still haven’t stopped teasing me for crying at the concert.

I still talk to my therapist every week. He says there is progress, especially in my relationship with my mother. He asks me every week if I feel like I am still failing. I answer yes every week. There are long battles that dominate our lives. I tell my friends I can’t go out because I have other plans when really it’s because I’m anxious. I don’t talk in class for fear of being wrong. I feel guilty when I have to buy 50-dollar shoes because those are the only ones I can handle the fabric of without having a panic attack. I sometimes don’t get to all my homework, I don’t eat like I should and I get too anxious to go to the gym. So yes, I’m still failing.

Then he asks if I feel like I am progressing. And I answer yes. Every day, there are less panic attacks. Every day I practice touching different things so I’m able to handle more stimulation on my skin. And as the current One Direction song says, “We’ll always find a way to make it out alive, won’t we?”

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My Family’s Daily Mantra After My Child’s Sensory Processing Disorder Diagnosis

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Every morning I help my husband get the kids up, get their clothes out and get my daughter dressed for the day. By the time all of that is accomplished most mornings, it is time to for me to leave. As my husband finishes dressing our son, I give everyone their kiss goodbye and say the same three phrases to both kids individually: “Be kind, be yourself and be grateful for things given to you.”

I started some rendition of this phrase years ago when my daughter was a baby, and over time it has evolved to its current version. I am sure my daughter can recite it with me now if I asked her. I settled on this version of my mantra after my daughter was diagnosed with sensory processing disorder. As I say my goodbyes every day, the intention behind these words takes on different meanings for my son and my daughter.

Be Kind

Be kind is the first part of our mantra. I say it to my children to remind them to be kind to others even when they are unkind back. To remind them that people might lash out when faced with something strange and scary. That even though you are clear about your needs, people might not be able to hear them because they are too consumed with their own. Be kind anyway. Everyone is fighting their own battles.

I say it to my daughter because she is learning how to deal with her sensory processing disorder. She is often uncomfortable in her body and I want her to learn to be kind to herself, to be patient with herself. Be kind, I tell her. Be kind to yourself. Let your feelings out. Let us help you. Be kind to your body.

Be Yourself

I can’t think of a better message to share with my children. Be yourself. Do your best to tune out the noise of the world and listen to your own inner strength.

As a mother to a child with sensory sensitivities, I feel this tug every time we begin a new therapy and attempt to help our daughter with self-regulation. I don’t want to desensitize her. I want her to know that while her sensory needs can bring challenges, they also make her spectacular. She is one of the most thoughtful and caring children I know. She is also so aware of everything people talk about around her. We have to be careful. She is aware that she is different. I lie awake at night worrying about this. So I tell my beautiful, sensitive child every morning to be herself.

Be Grateful for Things Given to You

Right now, I want my children to appreciate the time people spend with them, the games they are taught to play and the gifts they are given. We will never be rich and I can guarantee a lot of what they desire in life will take time, effort and the raising of funds. We just will not have the money to provide them with all of the new technology and toys that many of their friends will have. So I am hoping that if they learn to be grateful for the special outings or the new coloring book, it will help them to appreciate the simple joys of a life well lived.

This statement takes on an additional meaning when I share it with my daughter. There may be challenges for her with sensory processing disorder, but I want to teach her now to look for opportunities to be thankful. There is a lot of good in this world, and I hope this will help her find the balance she needs to thrive in times of challenge and growth.

Be Kind, Be Yourself and Be Grateful for Things Given to You

As I say this mantra to my children daily, I also say it to myself. As parents, we can get so caught up in the day to day that we forget to do this ourselves. Give back to the world that gives us so much and embrace where you are in life right now. This journey through life with disabilities can take us on paths we never expected. But I believe the best thing you can do right now, is be you. Your children need you, your friends need you and most of all, you, need you. Not the perfect, everything-is-under-control version but the real, messy, amazing human being you are.

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The Different Ways Sensory Processing Disorder Affects My Senses

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This is how I describe my sensory sensitivities to most people. As an autistic person, my five senses — touch, sight, hearing, taste and smell — are amplified.

This is not speaking for everyone on the spectrum, but it is common to have some kind of sensory sensitivity or sensory processing disorder with autism.

Here are some examples of sensory problems I have had (or still do), and what I believe people should be aware of when it comes to sensory triggers for people with autism.

Touch:

When I was younger, touch was a big deal for me. I hated being lightly touched. I either needed to be squeezed tightly in a hug or generally not touched at all. I wasn’t a cuddly child, and I hated having my hair brushed. For someone with autism, it can feel similar to an electrical shock, or a bee sting, or a paper cut… anything on that scale that is a sharp and often uncomfortable touch. I also liked falling and landing on the ground. The pressure from falling and landing on the ground like a belly flop was really soothing for me. The rapidness of it and the adrenaline rush felt good for someone who felt like they could explode at any second. Often, I felt all kinds of pent-up tension inside, and often I would not know how to handle this build-up of anger.

My parents had all kinds of tools they used for me when I was younger. I had a treasure chest filled with rice that I would touch, I slept in a hammock for a while, I was in the pool a lot — all kinds of different things. I needed things to touch because every part of my body felt ultra-sensitive.

Today, I’m not as sensitive about touch. I enjoy hugs, I can handle people touching my shoulder when they talk to me, etc. But I am sensitive to it when I am tired. I tell my fiancé that the best thing to do for me when I am upset is to give me a big, tight hug where it seems like for anyone else it would be painful, or just not to touch me. If you were to brush a feather on me when I was tired or upset, I would feel literally like punching a wall; it hurts that badly.

Just because we don’t reciprocate physical touch does not mean we do not love you. I know many parents who feel like they aren’t connected to their child because they don’t enjoy their touch. Even though we might not like the way you show your affection, it doesn’t mean we don’t have any for you. I know some people consider physical touch to be a part of how they express care, but that doesn’t mean it is the only way. Try to understand the ways we show we care that may not be in your way.

Sight:

Many people with autism can be visual learners. As a friend of mine put it the other day, we might miss the things you see, but you also might miss the things we see. I find that I see a lot of minor details most people might overlook in certain situations. I notice many things. I find myself constantly looking around a room, seeing everyone’s faces, the cracks in the walls, what’s out the window, counting the moles on people, etc. I feel like I can see everything without even trying that hard. People might find it rude when I don’t always make eye contact, but a lot of the time, I have a better time retaining what you are saying when I don’t look you in the eye.

I think sight is my strongest sense. I have a really good eye for color, I notice things most people don’t, I’m really good at puzzles, I always pass those “mind trick” drawings, etc. I think the downside to my strong sight is that I have a really hard time being outside in the sun for long periods of time without sunglasses on… good thing they look fabulous on me.

Sight is one of those things that, if I am tired, if combined with other senses, can be hard to deal with. If I am at a really loud concert with smoke machines and bright lights, it can get super overwhelming. I am also very easily distracted. At times it can be hard to get my attention because I am so busy mentally soaking in everything in a room that I forget about what you might necessarily want. There is also difficulty with spacial relationships. I have a hard time parking my car sometimes because I get anxious about hitting the car next to me, even though I may have “plenty of space.”

Hearing:

I hear everything or I hear nothing. I can hear a conversation clear as day in another room, or you can be trying to get my attention while I’m sitting right next you and I literally can’t hear you. My parents thought I might be deaf before I was diagnosed because I wasn’t responding to my name and I also didn’t really speak till age 4. With any kind of sudden, loud noise, I tend to freak out a little. I only do a little on a normal day, but when I am tired, it becomes a much bigger deal. I feel like I can walk into a room and hear all the details of every conversation. I memorize songs by listening to them once. Being given instructions or notes about things can be ridiculously hard for me. If I look at you funny after you have given me a list of tasks, just know it probably went way over my head and that I either need it repeated or I need to go write it down. I’ve gotten better at advocating for this sort of thing, but it can be hard to remember in the moment.

Surprisingly, I have a really easy time articulating my thoughts or ideas, though some other people on the spectrum may struggle with this. But when reading things out loud for the first time, it’s like hearing the sound of my own voice catches me off guard when I am also trying to process the information I just read. Too many things going on at once. I hate when multiple people try talking to me at once. I literally cannot process everything all of you are trying to tell me at once, and it gives me a great amount of frustration. Unfortunately, sometimes one of the only things to help myself when I am frustrated and tired is to swear; it’s therapeutic for me. The crispness of cuss words literally feel like I am popping bubble wrap — it’s soothing.

A little advice:

  • When giving instructions to me, if you can, write it down. The combination of you telling the tasks to us and showing them can help me process it better.
  • Try not to have multiple people speaking at me at one time. Most likely, it won’t stick, and it will be frustrating for me.
  • Be mindful of loud, sudden noises. I can’t always help feeling overwhelmed by it, and things happen, but if you can, remember it.
  • Calling my name from across a room isn’t always the best way to get my attention. In fact, for many of us, that might be one of the first signs in getting our diagnosis.
  • If someone can’t articulate a thought or an idea verbally, see if they will write it out. That can help them process their thoughts.

Taste:

There are some foods in my life I have maybe tried once or twice that I will never eat again. Did it taste bad? Not necessarily. Often someone with autism may have a hard time eating certain foods because of the texture. I grew out of a lot of my texture sensitivities. I was the kid who literally ate nothing but peanut butter and jelly sandwiches the early parts of my life. Up until the age of 19 or 20, I literally didn’t eat vegetables. Now, I’ve found stuff I like that is good for me. It can be really hard to explain why texture is a big deal… it literally feels like eating nails when some things have a weird texture to them. Now, I don’t walk around looking at foods and going “that looks weird, or is bumpy, so I won’t eat it.” (To be honest, some things I haven’t tried because they are kind of strange-looking.) But you never know unless you try. I’ve had to learn that my whole life — not just with food, but with everything!

I believe the best thing a parent can do for a child with autism is to guide them to try new things. Food seems like such a basic idea to do this, but it really can be a big deal. If I hadn’t had my fiancé getting me to eat new things, I wouldn’t have found some of my new favorite foods! We don’t have to like everything, but if you give us options, eventually we might find something we like. Parents, I suggest finding what works and then seeing if you can build off what you find is good. Finding foods your child likes is good, but there are so many possibilities you might not have even thought of.

Smell:

It’s kind of cool how I can smell a lot of things, but it can get overwhelming. I am really good at differentiating similar smells. Sometimes autistic people with sensory integration disorder might have difficulty identifying smells or discriminating between smells.

I know this was super long, but I hope you got a lot out of it.

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