A Letter From Someone With Autism Who Was Told She'd Never Talk

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Not many people understand me or really take the time to. They don’t understand meltdowns or sensitivities. It can become difficult to deal with.

When I was 2 and half, I was diagnosed with autism after I’d stopped talking and socializing. The doctors initially figured it out because I had a meltdown over being in the boys’ “Cars” room instead of the “Strawberry Shortcake” room. It was followed by about two years of not talking, many meltdowns, and sensitivities that even I didn’t understand. Doctors said I’d never talk again, I’d never be able to participate in normal school, and I would never socialize.

I was picky about my things. My stuffed animals had to be organized a certain way. I had to have matching clothes made out of material I was comfortable wearing. My toys had be organized by size and color. My bed had to be made perfectly. My food couldn’t touch. Only certain people could hug me or help me through a meltdown. I screamed when someone didn’t understand what I was telling them — because not being able to physically tell them made me upset.

I was often picked on for my organization, and I didn’t always understand things right away. A lot of people did it out of fun. But they couldn’t really understand how much it hurt me.

I had many people, namely my mom, help me so I could speak again and learn to cope with meltdowns. I started talking again when I was about 4. I still had to get speech therapy, but it really helped.

isabella with her family

Often times I was misunderstood. Nobody knew why I broke down in class, or got frustrated and didn’t want to do my work, or got in trouble so I could go to the library and read books. Nobody knew anything about autism spectrum disorder, and often told my mom I needed to go to a mental institution for evaluation. I was fine, just neurologically different.

I know there’s frequently this belief that being autistic means you’re not smart. But autistic people often have high intelligence and really are smart people. I’ve always gotten mostly A’s and B’s in school. If I get bored in school I won’t do my work because I feel like I can’t learn anything. I remember most things, including conversations I had years ago. I was accepted into an advanced program for middle school and received an award from the President in fifth grade along with four other people. I skipped eighth grade. I can read most books in eight hours. I can remember lyrics to a song after listening to it twice. I soak up everything like a sponge. I have friends and family who understand me. Point being: autistic people aren’t unintelligent people, regardless of what others say.

I know this may not make much sense. I know there’s a lot of information that may be confusing. But I’ve come a long way from the little girl I was.

If you’re in a situation like this, don’t give up. You’ll be OK. If you’re watching someone go through this, they’ll be OK. Doctors aren’t always right in saying a person won’t speak, or be in school, or socialize. You can’t give up. Work with them. Help them. Everything will be OK. Just have hope that it will.

The Mighty is asking the following: Write a letter to your teenaged self when you were struggling to accept your differences. 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 Submit a Story page for more about our submission guidelines.              

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Why I'm Not Celebrating Autism Awareness Month

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It is April. It is Autism Awareness Month. Our Twitter feeds, Facebook pages and other social media accounts have no doubt been flooded with rainbows, jigsaws, blue or what ever symbol or color they have chosen to use this year. But mine has not.

I don’t feel the need to don my onesie for the day, or bake a load of cakes or whatever the latest ploy may be because to me it is just a publicity stunt. What will it be next month? To me “stunts” like this do little to raise acceptance of autism but serve more to reinforce the stereotypes.

I am also uncomfortable with the fact that many of these campaigns are run by charities who, let’s face it, want to make money. Many try to pull at your heart strings and make you want to part with your hard earned cash.

It makes me feel really uncomfortable.

Where are the stories that I want to show my son?

Because after all, isn’t that who it is about? Autistic people, like my son. What message do I want to give him?

There will be some who say, “Well, isn’t any publicity good publicity?” In my opinion, no. Not if it reinforces stereotypes.

I would like to see documentaries showing autism success stories, brilliant artists, musicians, dancers, etc., giving an honest account of their journey to get where they are now.

I would like people to see the diversity within the autistic community, not only the “extremes.”

I would like to watch a concert with amazing autistic performers or a play with autistic actors.

I would like to see autistic athletes competing.

I would like to listen to autistic authors speak, like Temple Grandin, or watch TED Talks like Rosie King’s “How autism freed me to be myself” or Steve Silberman’s “The forgotten History of Autism.”

I want acceptance! I don’t want awareness.

So I will continue to try and challenge those stereotypes and raise awareness of the real issues that face autistic families on a day to day basis. I will continue to write about us honestly and in my own quiet way…

But I will continue to keep one eye on Autism Awareness Month. Perhaps I will be pleasantly surprised.

Lead photo: Thinkstock Images

The Mighty is asking the following: Describe your experience of not quite fitting under one specific diagnosis or a label your community identifies with. 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 Submit a Story page for more about our submission guidelines.

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The Choice I Hope People Make When It Comes to My Son With Autism

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Autism is not a choice. Acceptance is.

Take a moment to digest that…

Now imagine you’re at a busy supermarket, and as you approach aisle five you can’t help but notice a woman and her child. The child with his hands over his ears screaming and the woman, who appeared to be his mother, pleading with him to stay calm. The boy reaches out of the cart where he is sitting and begins to aggressively swing his hands at his mother. The mother responds by wrapping her arms around him and saying, “It’s going to be OK.” You go on your way to complete your shopping as if the incident in aisle five had never happened.

Finally at the checkout line, you begin to load your food on to the conveyer belt. Suddenly, you hear in the line next to you the familiar cry of the boy from aisle five. You peek over and watch as his mother tries to keep him from climbing out of the cart, dodging his hands from hitting her, all while she pays the cashier. Again you mind your business, pay for your groceries and make way for the exit. While leaving the supermarket, the woman and child were stopped at the exit by another shopper. As you pass, you hear the shopper say to the mother, “You shouldn’t let him do that to you.” The mother smiled and responded, “My son is autistic, have a nice day.”

OK, so we’ve all seen a child throw a public tantrum. Have you ever rolled your eyes or stared out of judgement of that parent? Saw a child acting out and said under your breath, “If I was that child’s parent…” Or my personal favorite, have you ever approached the parent and told them how to raise their child? If you answered “no” to the above questions, congratulations, I believe you’ve found acceptance. Be proud of it and hold on to acceptance; it exists but sometimes can be rare to see.

The reality is, the boy from aisle five is my son and I am his mother helping him through a meltdown. “Oh, a meltdown — that’s the same as a tantrum.” False. A tantrum, usually associated with young children, can be when the child acts out to overwhelm the parent and in return gains control or gets their way in the situation. A meltdown can happen at any age, the child or adult becomes overwhelmed and loses control of their behavior and sometimes there is no gain. The next time you see a parent struggle with their child at a supermarket, autistic or not, meltdown or tantrum, think before you act. Instead of staring, why not ask the parent if they need any help. My skin is not as thick as the world seems to think it is. Sometimes your stares and whispers don’t bounce right off me, sometimes they pierce my heart.

My child has autism, and he can’t always control his behavior. He did not choose this, but some people without autism choose to not find acceptance. Imagine if the opposite were true. Here’s my slice of awareness pie for Autism Awareness Month, take it or leave it — if you haven’t found acceptance, find it, because it’s a beautiful thing.

boy walking through crowd wearing superhero cape
Kathleen’s son.

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 Submit a Story page for more about our submission guidelines.

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That Time I Blogged for 26 Days From A-Z for Autism Awareness Month

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son standing in fountain In honor of Autism Awareness month in April of last year I started a project to raise my own awareness on my small little corner of Facebook by lettering each day A-Z and sharing a little bit what autism is and what autism isn’t.

I have two beautiful boys both on the spectrum. They couldn’t be any more different, and while each have their unique challenges, they also each have their unique strengths.

Initially, without telling too much, I shared how things might look a little behind closed doors along with a personal photo to my friends who might not otherwise get that glimpse. But as the days in April passed and I became more comfortable with the safety of Facebook, a change took place with my friends on my page. Instead of the usual 20 or so likes I would get per post, I started getting hundreds. I also started to understand that perhaps the wrong kind of awareness exists. Friends and colleagues began to approach me to let me know just that, and thanked me for my efforts. Acquaintances stopped me to ask questions. I had others quietly ask me for advice since they weren’t “out” yet with their concerns about their child. Others even reached out to offer help in some way.

Somewhere around “K” in the A-Z tale, my husband, who is a wildly private person, changed as well. He too was being stopped by supportive members our community. He had a change of heart. For the first time, he let me know that he was proud of us as a family and that he believed I was changing for the better through the process of writing. I had not changed. I finally felt I had permission to be open. The more he saw he could trust that I would still protect some of the more personal aspects of our life while still being honest, the more open and honest I could become. The process was cathartic for both of us. 

I asked my 12-year-old to read and approve every post or blog pertaining to him. My slow-to-warm, seemingly uninvested Aspie now looks forward to reading my writing and even asked to attend a large and lengthy public speaking engagement where I will be presenting.

Though I started with something on April 1… 26 days later I ended with something else.

April is Autism Awareness Month. In our world where every day is Autism Awareness Month. I erroneously thought “we don’t need any more awareness… unless you have not interacted with the world at all in the last 10 years, everyone has heard of autism… everyone knows someone with autism… enough already with the awareness…”

But I’ve found, most people who don’t really know someone with autism don’t understand it, even though they thought they did, and they certainly don’t hop on autism awareness blogs to understand more. I don’t fault them for that. I would not either. I am a mother of two beautiful boys. Though their autism defines them about as much as their big brown eyes, this projection that we are just like every other family makes everyone around us more comfortable but ultimately becomes the elephant in the room. Not just for those who want to ask questions around my silent insistence things are “just the way they are” but by letting my kids think they are just like everyone else… when they are well aware they are not, leaving them wondering why their feelings are incongruent with the reality we try to portray.

So this year I once again started one more blog A-Z. It’s not everyone’s journey in autism, but it is ours, and it has been healing for all of us to say it out loud.

Follow this journey on Running Through Water.

The Mighty is asking its readers the following: 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 [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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The Moment I Realized I Was on the Autism Spectrum

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At some point in every autistic’s journey — OK, maybe not those who were diagnosed from a very young age, but rather those who flew under the radar for a long time — we can have certain “light bulb” moments that lead us to presume we’re on the spectrum. Maybe it’s the fact we’ve always been a little bit “different.” Perhaps we have become more aware of social struggles as time goes on. Whatever the case, I’d like to talk about my personal experience.

I didn’t first hear of Asperger’s until I was 22 and in my second to last year of college, when I’d learned of students’ kids who had it. Other than the fact it sounded an awful lot like “asparagus” to me, I didn’t give it much thought. I knew it was a part of the autism spectrum, but that was about all I knew. I had the common misconception that it meant one was “in their own world,” as that’s what I had been fed by the world.

Fast-forward about four years. I was working as a supported housing specialist for the same agency I currently work for. I had always known I was “different,” but I had attributed it to the fact that I was diagnosed with ADHD at 25. Something still seemed to set me apart from others though. My literal thinking. The fact I couldn’t read between the lines. I had this genuineness and innocence about me. Jokes often went right over my head.

I don’t recall how it happened, but I somehow stumbled upon a blog by a girl with Asperger’s. As I read her story, I had that “light bulb” moment and thought, “Wow, I could have written this!” The author talked about her sensory experiences. I had always had sensory sensitivities for as long as I could remember. She talked about other things which I could totally relate to as well.

Taking what I now knew, I began to research Asperger’s. After taking online quizzes and looking at lists of female traits, I was convinced that I, too, was an Aspie! I spent the next five years involved in the community and made several friends in Facebook communities. Though nothing was set in stone, I learned that it was OK to self-identify until I got the answers I was looking for.

When it finally became official, on March 19, 2014, the first thing I felt appropriate to do was to share my story with the world! The pieces of the puzzle finally fit together, hence the name of my blog, “The Pieces Fit!” I had validation. My suspicions were confirmed.

Whether you have been suspecting for a long time that something is a little different about you, or you learn something later on that gives you an “aha!” moment, we all take different paths down the road to self-discovery. I believe it truly is one of the most rewarding experiences one can live!

Follow this journey on The Pieces Fit!

The Mighty is asking the following: Were you diagnosed with your disease, disability and/or mental illness as an adult? Tell us about the moment you finally got your diagnosis. 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 Submit a Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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Our First Year With an Autism Diagnosis

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It’s only been a year. A year with therapy, meetings, tears, laughter, meltdowns and milestones. A year with an autism diagnosis. December 3, 2014 was a day our family changed; it was hard to conceptualize the enormity of how we were going to change in the 365 days to come. December 3, 2014 was a day that plays over and over in my head.

It started with Dr. B walking into our home and watching our 2-and-a-half-year-old run around from toy to toy, with a big smile on his face. He is a happy little guy. He smiles big, and his hugs can melt your heart over and over again. However it took her 45 short minutes of interacting with him to then just simply say…

“I feel comfortable diagnosing him on the spectrum.”

My stomach dropped; I looked at my husband, and he looked at me, but we quickly new better than to look at each other for too long because I saw it in his face that we were both going to breakdown.

I responded back with “OK.”

With that she smiled, and said, “Wow, you must have known because you don’t seem surprised.” I was shocked by that comment.

What’s a “normal” reaction to an autism diagnosis? I calmly responded with, “Well I don’t know you, and I can assure you I will cry the moment you walk out this door.” She talked a bit more, and I didn’t listen; I just wanted her out of my home. She was so calm and almost insulted by my non-reaction. Did she want me to cry and breakdown? She left. I cried.

My husband and I didn’t talk much that day. We met my family at our annual Christmas walk and dinner and took lovely photos, ate great food and had one too many glasses of wine. We didn’t tell anyone but my mom. I begged her not to tell my dad or anyone else. My husband and I needed time to really grasp the magnitude that was his diagnosis. We didn’t understand it, nor did I understand how to casually drop it into a conversation at the park with my mommy friends or on a playdate. What was I expecting from their reaction? Did I want one or not? Would they judge him? Would they judge me? So much anxiety would flood me when thinking about it to myself; I did not have it in me to talk about it with others.

After a few months we slowly started telling people. Telling my brother was hard, telling my best friend of more than 25 years was nerve-wracking. Watching my husband struggle to even say the word “autism” has been and still is extremely heartbreaking. I ended up writing a letter to my sister-in-law, and my husband called his parents after five long months of saying, “I will call them tomorrow.” The anxiety around autism conversations last year was constant and always on our minds.

It was an awkward first year. We didn’t know how to say it, we didn’t know how to act about it. I finally wrote a long and detailed email and sent it to grandparents, aunts, uncles, cousins and friends. It was exactly what I needed to say without everyone watching my eyes fill with tears and my voice become shaky. It took us nine long months to actually tell “our tribe.” We heard many different comments like, “The longer you hide it, the bigger of a deal it makes it,” and “Just tell people,” or “I wouldn’t tell anyone either,” “He’s so young, how do you really know?”

We were confused this year. We were dipping our toes into the shallow end, and thankfully we now feel comfortable to dive right in and tell anyone (when appropriate). It’s nice to be able to talk about autism and spread advocacy when I can.

 

I woke up this year on December 3, 2015 to Milo yelling in my ear, “Mom, please can I watch movie?” My first reaction was to say, “No, go back to bed!” It was still dark out. Then it hit me — a year ago we were struggling to communicate with him. He had very limited verbal communication, about nine words. A few months earlier his speech evaluation graded his age equivalency at only 9 months old. A year later — 365 days later — he is talking in full sentences, something I wasn’t sure he would ever do.

family photo

family photo

The amount of support he has gotten through his early diagnosis has truly been life-changing. Yes, one year ago I was angry at his diagnosis and that lady who so calmly walked into my house and told me he is on the autism spectrum. Today I have come to see it as the most crucial and beneficial day for my son and for our family. Without the 20-plus people working with my son, he wouldn’t be where he is today, and our family wouldn’t be the same. My husband and I have come to understand and love all the amazing people who have come into our lives because of his diagnosis. Most important, this year, we survived, thrived and are embracing our journey.

The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? 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 Submit a Story page for more about our submission guidelines.

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