Adult With Nonverbal Autism Shares What Sensory Overload Feels Like for Her

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A photo of Sophie Webster outdoors wearing a red coat and gray knit hat
Meet Sophie

Last year I met a young woman through Facebook named Sophie Webster. She lives in the U.K. and we live in the U.S. Although we’re thousands of miles apart, Sophie has taught me far more than any therapist ever has about my son, Kreed. Sophie uses a communication device as well and can type out her thoughts. She’s given me insights into Kreed that’s allowed me to better teach and understand him.

I believe Sophie’s words can change the minds of anyone who thinks those who don’t use their natural voice have nothing to say. She spent years unable to speak or be heard, and so many ignored her. Even today, although she uses a device to communicate, people are quick to dismiss her. I asked Sophie if she would write a bit about her experiences. So, without further adieu, here are a few snapshots into Sophie’s world.

Sensory overload 

Sensory overload is the worst feeling in the world! I get it when I see too many people walking past me or if I hear too many noises at one time. For example, in a room of people talking, my brain tunes into everyone else’s conversation, and I struggle to filter the voices out and listen to the carer I’m with. It’s so frustrating and I have to be redirected to listening to my carer. When I get sensory overload it’s like I have 100 buzzing bees in my head, and my head hurts a lot and feels like it will go bang! like a balloon. It’s the most uncomfortable thing ever. I bang my head on things to try and relieve the pressure in my head, to try and stop the feeling. While I’m experiencing sensory overload, I find it hard to talk or make any sentences. My speech just won’t come out as I want it to, and I can’t make the words make sense. I get cross about it and just want to block all noise out and close my eyes and have some peace and quiet. I don’t think anyone can ever truly understand how it feels to experience it, but if you imagine having 50 people trying to talk to you at one time and needing to answer every single one of them, then maybe — just maybe — that’s a little insight into what it feels like.

Obsessions

I have a lot of obsessions like time and numbers. I like the numbers 0, 5 and 8, so when I used to wear a digital watch, I wouldn’t do anything unless it was on one of those numbers, which, as you can imagine, caused many problems. There are many ongoing battles of obsessions which come into my life daily, such as wanting to always drink from a red or pink straw, drinking from the same cup, sitting in the same seat in restaurants and cafes, standing in the same place at the gym — the list is endless. But my carer is great at working with me and we’re overcoming a lot of hurdles my life easier. Sometimes cracking a new obsession is hard; it makes me so twisted and frustrated inside, and I throw my head back and close my eyes. I can imagine it’s frustrating for my carers and people to witness, but it’s just the way I work the frustration out of my body. Then I try and listen to my carer and understand why we need to do something and what the next step is. It sounds complicated, I bet, but believe me, overall it’s so much easier than just giving into all my obsessions.

Communication app 

I first got a communication app in 2011 for my 21st birthday (Best present ever!). I was having daily meltdowns because I couldn’t verbally tell my carers what was wrong or even say hello to my friends at my day service. I could sign, but not everyone understands that language, so my list of who I could talk to was limited. I decided to throw myself into using my app because I wanted to be heard and it felt good to have a voice (I had waited long enough!). Since then, I’ve never looked back.

I hope you’ve enjoyed hearing Sophie’s thoughts and will think about what it’s like for your kiddos and what we can do to better support them. It’s voices like Sophie’s that will ultimately raise awareness and give others understanding.

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When I Feel Alone as a Mom to a Child With Special Needs, I Remember This

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My son, Mareto, came home from Ethiopia as a sweet, wide-eyed and peaceful baby boy. Having a child was a dream come true for me, and I cherished every moment — even the nighttime feedings.

There were several moms at our church who were pregnant with babies due right around the time Mareto came home. While they talked about their kids’ growing bellies, I sat on the sidelines and thought about the paperwork I was laboring through. While they shared delivery stories, I sat quietly and thought about the trips I took around the world while I held my sweet son. At times I wished I could relate to their stories, but I didn’t mind too much because I figured after a little time passed, I’d be just another mom among all the other moms as we raised our kids.

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Photo by Anecdotally Yours

So it came as a sad surprise to me when months passed and I still felt so alone and different in parenting. Why couldn’t my boy sit through church with me like all the other babies? Why did my son fall apart when we tried to take him into the nursery? When the congregation sang or applauded, why did my baby begin crying hysterically? All the other kids started eating solids and saying words. Why didn’t my boy call me “Mama” and start talking too? Was I a horrible mommy? Why wasn’t my son developing like all the other kids? Mothers shared milestones on Facebook, and I cried behind my computer screen.

Soon it became evident that something was different about my precious boy. I knew he wasn’t like the other kids, but I didn’t know why. On September 5, 2012, we learned the reason behind all of it. Autism. One word and I felt more alone than ever before. I didn’t know anyone with a child with autism, but I knew our world would never be the same.

While other mommies took their kids for mid-morning playdates, we drove to therapy. When other children enjoyed birthday parties and gatherings, my son melted down – overwhelmed by all the people and sounds. The other kids his age were beginning to speak in full sentences and ate sandwiches; Mareto communicated mostly by gesture, and we were happy if he ate a bowl of oatmeal once a day. Other moms brag about their child who just went in the potty, and I wonder if I’ll be changing his diapers when he’s 5. If I let it, having a child with autism can be a lonely place.

A special friend sent me an email with a portion of her daily devotional. I read the words, written by Beth Moore, with tears in my eyes.

Blessed are you when what takes the natural course with someone else means that a miracle has to happen for you.

I’ve got a friend that I admire so much, a young woman in the Houston area who has a son with autism. He, like many children with autism, did not speak for many years.

When he was about 4 and a half, I got a text from his mom saying, “He said ‘Daddy’ today!” Nobody on the planet has ever had that much celebration over saying the word “daddy.” Nobody! You can’t imagine how all of her friends just shouted praise to God.

Other kids have been saying it all day long and no one noticed, but we noticed when this one did! What had been a natural course for someone else had taken the supernatural power of God for this little boy.

What seems effortless to some may take miracles for others. But I’ve never met anyone who afterwards would have traded the miracle! I know it’s hard to imagine that when you are in the midst of it, but trust me you’d rather have the miracle.

Through the miracle of my son I can see that I’m never really alone. I believe God sees every struggle, every tear and every lonely moment. He holds my hand through it all even when I can’t feel his presence. Mareto has opened my eyes to see the miracles in our everyday lives. I’ve been blessed to find friends who have risen from the crowds, wrapped their arms and prayers around us and decide to take the steps to go on this journey with us.

Mareto has given me more joy than I ever could have imagined. We work so hard and we delight in each triumph. There are many joys to be found in the little things and that’s where I choose to spend my days — finding joy in what might seem like ordinary moments for others… but are truly extraordinary moments for us.

And because we’ve been given the gift of Mareto (and his little sister, Arsema) I’m never alone. I have more love, more affection, more snuggles and more hope than ever before… all wrapped up in a very special boy.

This post originally appeared on LaurenCasper.com.

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To the Girls Who Mocked My Son at the Mall

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boy and girl posing in colorful cut out Last evening as I walked through the nearly empty mall with my two youngest, you five girls were several yards behind us. We’d just seen a movie and were in great spirits. We were walking to meet up with four of my older children. We stopped to take a photo at one of those cutout scenes where you stick your faces through the holes. I caught sight of you as we took our photo, walking and giggling and having a good time. I’ve had teenaged girls and know how much fun they can have together in a mall. I noted to myself that you were a lively group but certainly not threatening in any way.

You were walking faster than we were, and the gap between us was closing. I turned from snapping our photo, and we continued down the hall. My son fell behind a few steps as he was adjusting his earbuds. He was listening to his music like a typically developing 13-year-old boy might do in a mall. Though if you could have seen his playlist, you would have realized he’s not a typically developing 13-year-old boy. He was probably listening to Disney tunes, The Muppets or a preschool sensation called The Fresh Beat Band. You probably didn’t notice he was different until you saw him run a few steps to catch up to me. He always runs on his toes with an awkward gait. And I’m sure that a 6’3” young man running on his toes looked pretty ridiculous to you.

The mall was empty enough for me to hear your innocent girlish giggling turn to that of a contemptuous kind of laughter. I knew before I turned, but I couldn’t stop myself. I saw one of you mocking my son. You were running on your toes and flailing your arms. My son and his little sister kept walking, not noticing that I’d turned to look behind us. I took about three steps back toward you, and your forward pace slowed. I must have looked intimidating all of the sudden. I’d gone quietly content to irate in about a second. I can only imagine the look I had on my face as I took those few steps toward you. I did see the looks on your faces. Your laughter stopped. I saw guilt, and I saw your faces redden with embarrassment. You were caught. You thought you’d have your laugh at my son’s expense, and we wouldn’t notice. Or perhaps you didn’t care if we noticed, but you certainly didn’t expect me to turn and call you out. I cannot remember my exact words, but I believe they were, “My son has autism. I sure hope you are not making fun of him.”

Your stuttering and stammering, “We’re not. We’re not making fun of anyone,” caused me to doubt myself for a split second; but then I remembered I’d seen one of you copying my son’s movements while all five of you laughed. I said no more and turned back toward my kids and caught up to them, thankful my son had his headphones in. As we all continued down the hall I had to remind myself that all five of you are just kids, probably nice girls most of the time. One of you was impulsive enough to make fun of the differences you saw in my son and the other four were weak enough to go along with the joke. I had to remind myself that you all have families that love you as much as I love my children and you all may have issues of your own to deal with. And perhaps you really did believe that making fun of someone else is just innocent fun and we’d have no idea it had even happened.

Perhaps you go to a school where the kids with special needs are kept separate from you, or perhaps it’s acceptable amongst your peers to laugh at their differences. We’re from a small town, and my son goes to a small school. He has peers who accept him and don’t make fun of the way he moves or talks. They know he’s different and help him fit in. They don’t laugh at him or belittle him. As a matter of fact, had some of them been with him last night, they would have probably said more to you about your behavior than I did.

I have to admit that I have no idea if turning and calling you out was the right thing to do or not. I didn’t know how to react. You see, I’ve never seen anyone mock my son before. In fact, in 13 years I cannot remember him once being made fun of. Perhaps there have been times and I just haven’t caught on like I did last night, but I like to think you are the first. How does that make you feel? You broke a 13-year streak for us.

If statistics prove true and all five of you grow up to become mothers, chances are one of you will have a child or a grandchild with a disability. If it happens, I hope you get a 13-year streak without bullying. I hope you have an even longer one. And even more important, I hope if your son or daughter, grandson or granddaughter, are ever bullied that you will not be able to think back and remember the time that you yourself laughed at a child with a disability and caused a mother pain. The burden might be too heavy for you to bear.

This post originally appeared on Quirks and Chaos.

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I Never Knew I'd Turn Into This Type of Person When My Son Was First Diagnosed

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“Your instincts were right.”

This is what I would tell my past self — the self whose 13-year-old just got an Asperger syndrome diagnosis.

When he was 2, I knew something was up with my son. But no medical professional or therapist ever mentioned or discussed a possible explanation for his developmental and social issues. When he played with cars, he turned them over, placed them up close to his eyes and watched the wheels spin and spin and spin. He was fascinated by light, and we’d go from mall to mall during the holidays to look at all the Christmas tree displays — and they had to be the multi-colored lights, not the plain white twinkles. He was captivated (no, obsessed really) with the Tyrannosaurus Rex and collected every toy, book and VHS on his prehistoric pal to learn and talk about it, literally nonstop. He paced around and around our coffee table engrossed in self-conversation.

With those kinds of behaviors and his milestone delays, I’d ask medical professionals, “Is he autistic?” The response was always a categorical “No,” followed by varying responses like… I’m an overbearing, overprotective, overreactive mom who just needs to relax and not worry so much.

“But now, you know for sure,” I’d tell my old self and feel comforted in the fact that I had my son’s back from day one and was already doing what was best for him. What I didn’t know then but know now is that my life would have no meaning, no depth, no purpose if it wasn’t for autism. I didn’t know that introverted, low-key me could become the persistent, relentless warrior parent who advocates for him and others so they can grow to their best potentials.

I’d tell my past self this:

“You’ll become a foot soldier with your eyes and ears constantly on the ground to clear your son’s path and scout for individuals and organizations who can join your ranks of support. You’ll be a covered wagon, pioneer woman blazing a trail into the unknown to create a better life for him. You’ll don your virtual business suit and become Mom, CEO to pitch for services and make sure everyone works together on the business of building your child’s self-confidence and skill set. You’ll be Dorothy, Lion, Tin Man, Scarecrow and the Wizard of Oz combined, using all of your powers, influences, creativity, fast-thinking, courage and heart so your he can (and will) thrive.”

I’ve played all of these characters and taken on even more alter egos from Sherlock to Iron Man —whomever my son needs me to be at any given point in time. Today, he’s 29 years old living in an independent living environment, driving and working as a voice actor. Does he still struggle and need more attention and support than my neurotypical daughter? Yes, but every day I see him needing just a little less of my oversight, and I just get to sit back and enjoy the incredible man he has become.

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For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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When a Doctor Poorly Delivered Our Diagnosis, This Is How I Responded

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“I have some very bad news to tell you.”

Those were the words that started the avalanche. The head psychologist of the early intervention program in our county said them to us after our 2-year-old son, Coby, endured a 4-hour-long evaluation. As my husband and I sat in the room in stunned silence, the doctor continued: “Your son is severely autistic and mentally retarded.” I’m sure she said other things after that, but neither of us actually heard them.

After a solid week of crying, I decided to pull myself together. Whatever this “thing” was called didn’t matter. What mattered most was that we would get our child the help he needed and try to prove this psychologist wrong. So we started speech and occupational therapy and lots of work at home. When Coby was 3 years old, he entered the school system and was incredibly lucky to have the most amazing teacher on the planet. We slowly realized our Coby was actually smart and had a super high IQ. Did he still have autism? Sure, but so what?

Fast forward ten years, and our younger son, Liam, was in the same boat. I saw the signs early on, and I was ready. When we went in for the evaluation, I was ready to fight. But then something incredible happened. A calm and peace came over me. There was no need to fight. This little angel who was my son yesterday, is still my son today. The diagnosis didn’t change a thing. I said the word over and over again: “Autism, autism, autism, autism…” I waited for the tears to come, for the period of anger and mourning, but they never did. I learned something important: Acceptance. I also learned that the experts are not always right about their prognosis. They get a few hours with a child who may be tired, frightened or just having a bad day. My children have autism, but autism definitely does not have them.

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5 Truths I’d Tell My Past Self About Autism

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Sophy&Son It’s been 10, 11 or 12 years since my son’s autism diagnosis, depending what you count as the start date (was it the day he was proclaimed “developmentally delayed,” “PDD-NOS” or “autistic”?). No matter the date, I’d still tell my past self these five truths:

1. Professionals will stop treating you like you’re crazy for thinking your son is autistic. Back when you started the journey, so-called experts like your first pediatrician didn’t heed your concerns or your PowerPoint-like presentations. But now, the understanding and recognition of autism has grown, so you don’t need to present the case for his autism at every doctor visit. Getting appropriate services still requires stamina, so it’s a good thing you developed your advocacy skills early on.

2. That resolution you made to have a good life with autism is one of the best things you’ll do for your son and yourself. You’ll even write about it in an NPR essay for “This I Believe.” It does give you a positive purpose, even on the hard days. It does help you appreciate the child and the life you have in the moment. It does make you grateful for the joy he brings you (spoiler alert: you will crack up with him at the emergency broadcast system).

3. Your quest to find the equivalent of a “What to Expect When You’re Expecting/What to Expect The First Year” for parenting a child with autism is a complete waste of time. Each person with autism develops in their own way, on their own path. But you will find something better: books, blogs and Facebook pages of people with autism who articulate their journeys and provide thoughtful parenting advice (especially those who become parents themselves), as do the parents of other children with autism. And your son will communicate more about his wants and, later, his thoughts. Ten years on, you will be an expert in his language.

4. While you will not be a paid full-time journalist, as perhaps you thought you’d be, you will use your journalism skills daily. You will not believe all the conflicting theories about the causes, treatments and approaches to autism you will encounter. Your ability to question, to research, to synthesize and to separate what’s valuable from pseudo-scientific manure will help ground you. As will your return to writing – on a limited basis about subjects that have nothing to do with autism (home design… who knew you’d like that?).

5. In 10, 11 or 12 years, when you look in mirror, you will be happy with the person you’ve become. You will like the person you’ve become not in spite of autism, but (in part) because of autism. There will be a time when you feel parenting a child with autism isolates you from the world at large. But then you’ll start to feel a connection with other people who struggle, other people who experience the world differently from “the norm,” other people who wake up each day grateful for, in your words, “the good life they make.”

The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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