To the People Who Say Autism Is ‘Merely a Label’

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I struggled to make the decision whether or not to be open about being diagnosed with autism. Not one to do things by half, in the end I decided to write a very personal piece for a British national newspaper on the specific difficulties of being female and on the spectrum. The piece was shared thousands of times on Facebook and Twitter and picked up by news outlets as far away as Australia.

I’ve learned a lot this week since going public.

I’ve discovered that most people are kind, compassionate and interested in finding out more. I’ve learned that once you open up, others do the same, and that many of us have issues we would like to talk about but can’t quite work out how to start.

I am genuinely proud I have begun the conversation and appreciative of the thousands of messages I have received. Mainly they have been from people offering support, asking for help for their issues or telling their own, often similar stories. I am grateful for every single one of them.

But I have also discovered something else. I have learned there are a few people who feel it is their right to tell you how your diagnosis is unhelpful, meaningless, an affectation, nonsense or merely something fashionable.

They are a tiny minority, but I am human, so the negative comments touch me more deeply than the positive.

These people say autism is merely a label. They advise forgetting you’ve been given life-changing information and suggest instead pretending it never happened and just to get on with the day-to-day. They imply finding a professional to explain why you struggle in certain areas is attention-seeking behavior, and they become angry that you want to help others in a similar situation.

This is what I want to say to those people.

My “label” doesn’t define me. It reassures me. It tells me I am not failing but instead should celebrate my achievements because they are hard won.

It is a vindication. It gives me the answers I have been searching out since I was young. It tells me my struggles aren’t my fault, and it gives me the courage to keep working to overcome them.

Wearing a Prada coat is making a fashion statement; telling people you are autistic is not.

My doctor went through years of medical school to gain her qualifications. She has then gone on to become a consultant and to spend her life specializing in autism. When you question my diagnosis, it is disparaging to her, a doctor who has dedicated her life to helping people like me. She is an expert. You are not.

Now that I have a diagnosis, I have specialist help, which would have been impossible to access otherwise. I’ve tried therapy before; it hasn’t worked. Now I see an amazing doctor who understands me at the deepest level and who has helped me be myself in a way I never dreamed possible.

Most of all, though, my label has given me an open invitation to join a community of generous, funny, warm and welcoming people who, like me, are autistic. These people support each other through the long, dark nights when fear grips and morning seems days away.

They are also people who will celebrate with you every success however tiny, who will give you their knowledge, their advice and their compassion. These people are important to me, and without my “label,” I never would have found them. 

Questioning someone’s diagnosis is invalidating to each and every autistic person, and it discourages the yet-to-be-diagnosed from seeking the help they deserve.

So I would like to ask that you please take a deep breath before you hit the keyboard and think hard about the impact your comment may have.

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

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When I Was Warned About Teaching Boys With Autism

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“Get ready! Are you sure you’re up for this? Do your doors lock? They bite, they scratch, they spit. Good luck getting help from home.”

Seven years ago, I took a teaching job at a school in my hometown. My job was to develop an autism classroom, primarily put into place because of two little boys. Twins. “Wild.” Both with autism, both nonverbal, both hyperactive.

That is what I remember most about beginning my career with Nehemiah and Jeremiah. These were not children preceded with, “Oh! You are going to love them. They are so sweet, they are so funny.” Instead I was told, “Get ready! Are you sure you’re up for this? Do your doors lock? They bite, they scratch, they spit. Good luck getting help from home.”

So I prepared. I had alarms put on the doors and arranged furniture to make it harder to escape. I removed staplers and picture frames and anything breakable from reach. I researched and planned.

What I could not have prepared for was how these two little boys would change my heart. How much better I would become because of them.

It wasn’t a job for the faint of heart. I was bitten, I was scratched, I had countless breakouts of ringworm. I went home exhausted, without lunch, every day. I wore no jewelry and most days put my hair in a ponytail so it couldn’t be yanked on. I rearranged my class 15 times. I called on our OT and SLPs constantly for assistance and suggestions.

And I loved. Almost immediately I fell in love with the mischievous grins on these two little faces. I learned to dance to the music Jeremiah hummed and rhythms Nehemiah drummed. I learned to advocate for them — to fight for their opportunity to eat lunch in the lunchroom, go to PE with other classes and attend music and assemblies.

I wanted so badly for my boys to experience the sense of community I knew they deserved. To walk down the hall and have other teachers and students tell them, “Hello!” For people to realize when they were absent. And it did happen. Students began to ask questions, and teachers began to invite us to their classrooms for fun activities. Third-graders began asking their teachers to come read to my students. And I saw these two boys become loved.

After three years, it was time for me to move on, and I agonized over the decision to leave Nehemiah and Jeremiah. I had three other students I loved as well, but they would be fine. They had support systems. Their families had support systems. But what about my boys? Would another teacher love them the same? Would another teacher be able to build a rapport with their mom? Would she worry over them in the summer, and make sure they had groceries or bed sheets?

In the three and a half years since I left them, I’ve had opportunities to visit. I had chances to speak with their teachers and therapists and keep up with their progress. And I’ve talked about them constantly. I tell stories of the funny, sad and frustrating things they would do. When I close my eyes, I see Nehemiah looking at me with his head cocked, one eye open, one eye closed and his finger on the side of his nose. I see Jeremiah rocking back and forth, quietly humming whatever song we sang in our morning meeting. I hear their giggles and see their smiles. I can still feel the chokehold-grip of their precious hugs.

And then one morning, I woke up to learn my boys are no longer with us on Earth. They passed away recently. My heart shattered, and my tears seemed endless. But my initial despair was my fear that no one would mourn them or truly miss them like I would. But then my phone started ringing, and text messages began coming in. Teachers I worked with checking on me, crying with me and mourning the loss of two precious boys who made a difference. The lives of Nehemiah and Jeremiah mattered. They taught the teachers and students around them about acceptance. They taught us that everyone is lovable. My heart is so comforted in knowing that these boys will be mourned and missed. And remembered.

When I read paperwork for new students and feel the undercurrent of warnings like the ones I received for Nehemiah and Jeremiah, I make sure to open my heart extra wide for them. When a student comes into my classroom, no matter how difficult, I look for something in their personality that is lovable.

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The Question People Don't Ask Out Loud About My Child's Autism Diagnosis

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Sometimes the question that doesn’t get asked comes up when we’re in a public place and we need an accommodation, or when we’re explaining something we are or are not doing.

Sometimes the question that doesn’t get asked comes up when we’re at social events and people meet my son for the first time. They will ask me about where he goes to school, what grade he’s in and the kinds of things he likes to do.

Eventually we get to a point in the conversation where I mention he’s on the autism spectrum.

They will pause the conversation for a moment. They will look at him and see a child who doesn’t look different from any other child, who may not be behaving out of the ordinary. Then they look at me, and sometimes I see the question in their eyes:

“Isn’t autism just a fad diagnosis — the diagnosis du jour so that schools and parents don’t have to do their jobs?”

To be honest, I wasn’t entirely convinced when his school first suggested he might be on the autism spectrum. But we knew he was struggling in class, and his father and I were struggling at home.

I knew we had tried different parenting and discipline techniques, talking with friends and teachers, reading books, doing Internet research and making little progress in teaching our son social interaction skills, manners, conversation skills and basic discipline.

If the school wanted to “label” him to give him extra attention and tailored help with things he struggled with, that was fine with us. Then we got the private diagnosis from a neuropsychologist. Then I started doing research.

Once we learned about autism spectrum disorder and how it was manifesting in our son, the accuracy of the diagnosis became clear. It was no longer a question of an unwarranted label on our son, but an informed awareness of an actual existing disorder and his unique developmental needs.

No one has ever asked me the unasked question, and if someone did actually ask me about autism as a fad or trendy diagnosis, my answer would be this:

No, autism is not a fad diagnosis. It is a complex and nuanced disorder, which means each person on the autism spectrum manifests it differently. You can’t always tell who has autism when you meet them and “when you’ve met one person with autism, you’ve met one person with autism.”

Autism feels “trendy” because experts and professionals have learned so much over the last decade that it’s now being talked about a lot more than it ever was. But being talked about a lot doesn’t make the diagnosis incorrect.

An autism diagnosis doesn’t mean schools and parents aren’t doing their jobs — it means they can do their jobs in the right way, the way that actually works and brings success for the child.

Yes, my son has autism.

Follow this journey on Autism Mom.

The Mighty is asking the following: Share one question people are afraid to ask about your experience with disability and disease. What’s the answer? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images

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When My Son Shared How He Feels About Autism

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I’ve written thousands of words about my son, Kreed, over the years. Our perspective on raising him, his journey with communication and the heartache through his vast medical conditions. I’ve had so many conversations over the years with Kreed as well, though most centered around his wants and needs and teaching him to comment on his environment.

There are a couple of moments that pretty much brought me to tears. We initially asked Kreed if he knew what his diagnoses were, and he replied yes and with the word “autism.” We had never asked him this question in 16 years. I would have assumed he knew because it played such a part in his life. So many people talked about it, and I know he’s seen the word on papers. He was in the hospital during this time, so our conversation was limited but powerful.

Some months later, I engaged in a second conversation with Kreed regarding himself — an introduction of sorts straight from him. It’s not for me to say how he feels about autism and what’s hard or not. So rather than write about Kreed’s autism and how he feels, this video of Kreed using his device (Dynavox Compass) to communicate is far more powerful.

Editor’s note: It is with a heavy heart we share the news that Kreed passed away on May 8, 2016. Our hearts are with his family, and we’re so grateful to help keep his memory alive on our site. He was truly one of the mighty.

Follow this journey on Kreed’s World and on the Kreed’s World Facebook page.

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When You Think a Child Is ‘Too Old to Be Acting Like That’

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Last week we were all trucking through the chaotic abyss that was Target before Halloween, and I heard a child crying. And by crying I mean losing their freaking mind. My husband and I exchanged a knowing look over our soon-to-be 2-year-old’s head: been there.

We continued shopping, and I turned down an aisle where a 20-something gal was fishing through rows of K-Cups. She sighed loudly each time the invisible child screamed. She rolled her eyes. A young man who worked at the store stepped onto the aisle and started stocking. She, again, sighed loudly – this time for his benefit.

He smiled at her.

“Yeah, he’s annoying everyone in the store,” he said.

As she rolled her eyes, again, I translated in my head: “I would never allow my kids to…” and I smiled to myself. Been there, too.

But then she said something that lit me on fire.

“Yeah, well I saw him. He’s way too old to be acting like that.”

***

When I started writing (fairly) seriously, I basically stumbled, arms flailing, into a group of bloggers. Actually, a friend invited me to a group with a bunch of autism moms in it. As I read through their blogs, I began to see the commonalities and the things that bonded them. I was allowed to watch and learn as they lived it. It turned out, the woman who started the group met many of the other ladies in an autism writer’s group. They eventually started their own group and routinely allow me to bore them with “Hunger Games” and “Doctor Who” references.

They are moms, they are activists, they are researchers, and God Bless – they are hilarious. I’ve never met a more supportive group of women.

My family doesn’t have experience with autism. When I was teaching, I only had two kiddos on the spectrum. I knew of autism, but I didn’t understand it. Yes, I knew the facts and figures. Yes, I had bits of working knowledge and had heard a few anecdotes, but even as a teacher, I didn’t see it every day.

After joining the group, I would scroll through my news feed and see the faces of their children with autism. They are sweet and hilarious. They are impossible and beautiful. They are focused, and stubborn, and they are children, just like all children, who need to be loved and accepted. The more I read about these faces, the more I fell in love with them. I began to see them through their mother’s eyes: their quirks, their bravery and their determination.

***

In Target, I bit my tongue. Hard. Because one day this adorable girl will understand. Maybe not firsthand, but she’ll see it in a friend’s eyes. She’ll see it on a student’s face. Hopefully, someone will teach her about food allergies and clothing sensitivities. About repetitions and stims. Hopefully, someone will explain to her what a “meltdown” really is and how it feels to be discriminated against. I didn’t scold her. I didn’t reprimand her, because the truth is, someone had to teach me, too.

As we left, I saw the boy. He’d pulled it together and stood next to his mother in line – eyes down and holding a small Hot Wheels car. I couldn’t “tell” from looking at him. Just like the 20-something woman couldn’t. But I could tell from looking at her. His mom had it written all over her.

Her shoulders were still back. She didn’t hunch or hide. She didn’t avoid anyone’s eyes. The checker never looked at them as he scanned each item from her overflowing cart, but what he and the other shoppers didn’t know was that she’d won.

She’s not a “bad mother” with a “bad kid.” She’s a warrior who has placed herself squarely in front of every harm that seeks her child. She takes the stares and sneers so he won’t have to. She knows every detail about him, and today she won. They are still in Target. He is quiet, and he is safe. She knew how to help her son, and she’d probably taught him enough that he was able to help, too.

As we passed with our two items, I said Happy Halloween. She smiled. I’d like to think she knew that Happy Halloween really meant, “I see you, and I see him, and you both matter.”

So the next time you’re shopping and hear an invisible child, take a moment before you judge. Because somewhere in that store is a momma doing her very best, and you don’t know the whole story. Maybe it’s a 2-year-old who missed her nap. Maybe it’s a 4-year-old asserting his independence. Or maybe it’s a boy in conflict with the world, whose momma allows him to be invisible when he needs it, and does her best to clear a path for him when he’s ready to be seen.

Follow this journey on Lizadora.com.

Do you have a story about your experience with disability or disease? Maybe a moment that made a big impact on you? Please send it to [email protected] and include a photo for the story, a photo of yourself and a 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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Girl Tells Tearful Mom Why She Thought Having Autism Made Her ‘Bad’

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When 7-year-old Cadence, who has autism, was at school one day, she sat under her teacher’s desk and wrote a note to her mother Angela. Cadence wondered if autism made her “bad” after hearing remarks from adults and television programs that portrayed children with autism in a negative light. She wanted to set the record straight.

In the note, which Angela posted on the family’s public Facebook page, Cadence first asked if “being autism” made her “bad,” which prompted Angela to ask what gave her the idea. Cadence wrote about the misconception that being a parent of a child with autism is “hard” and if someone has autism they might “hurt people,” adding that kids who have autism “have to be put in [jail] to keep others safe or tied up.”

“I don’t like hurting people,” Cadence continued. “I don’t like being [scared]. I would be [scared] in a [jail] room. I was born [with] autism but that doesn’t mean I was born bad.”

Then, at the end of the note, Cadence asks her mother, “Are you crying?”

What ‘messages’ are children hearing – from ourselves, from other parents, at school, from media and in the general…

Posted by I am Cadence on Wednesday, November 11, 2015

Angela responded, “Yes. I have happy tears that you know what is true; and I have sad tears because there are lots of people who don’t know what is true.”

Angela captioned the photo of the letter, “This ‘conversation’, between Cadence and myself, started under her teachers desk – a ‘safe place’ where Cadence had put herself in her confusion that she was somehow ‘bad’ – a belief that had culminated from over-hearing other parents and hearing news stories.”

Angela told BuzzFeed News that she hoped the letter would serve as a reminder that the way adults talk about children affects them more than we might think.

“The burden of responsibility for enabling all children to feel safe, accepted and loved, rests with us, the ‘grown-ups’ – and sometimes we need reminding that we don’t always do a good job of it,” Angela told BuzzFeed. “There have, on a handful of occasions, been scenarios where grown ups who are either not familiar with her challenges, or not tolerant of how she experiences the world, have behaved and responded poorly to her. The negative impact on Cadence of these incidents have been very clear.”

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