How I Explained My Son's Autism Diagnosis to Him

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My youngest child and I finally had “the Talk.” I had recently sensed that it was imminent, I knew that it was crucial, and I also had conflicting feelings about it.

Many parents of children with special needs know what “Talk” I mean, and it’s not “the Birds and the Bees.” During this “Talk,” for the first time, my child and I discussed the fact that he has a form of autism.

My son is 6 and a half years old and has a dramatic personality. Everything he feels, good and bad, he feels on a large scale. We jokingly call it “not boring.” He has an inquisitive mind, a huge smile, and a great sense of humor. I could go on and on listing positive adjectives to describe him. He also happens to have a diagnosis of autism spectrum disorder, what some might call Asperger’s syndrome.

My heart overflows with love for my darling boy, my baby. I am proud of him and not ashamed that he has a diagnosis of autism. But he often struggles when asked to use his own words to describe how he feels, or why he feels that way. He has only recently started to recognize and articulate his awareness that many things seem to come easier to his peers than to him.

I knew that very soon the time would come when I would need to explain to my son the reason behind some of those struggles. I also knew I had to be very careful with my words and how I presented autism. There is still so much stigma in attached to special needs, or even to simply being different (not in my mind, but society seems to feel differently). I didn’t want him to see himself as flawed, or view his diagnosis as restrictive, limiting his expectations of what he could achieve in life.

I did not want the truth to be damaging. I wanted it to be illuminative and empowering. I hoped that having knowledge of his autism spectrum disorder would improve his understanding of how his brain works and help him be more patient with himself. I hoped it would help him learn coping mechanisms so that he can better deal with frustration, distraction, and anxiety. I hoped that he would be able to tap into the unique way that his brain processes information and use it to accomplish great things.

An additional hope was that, as he grew, it would help him have a greater sensitivity and acceptance towards others around him who may also be facing struggles of their own.

The author's son, smiling.

The day we had “the Talk” was just like any other day; a day that happened to have the subject of autism present itself in a teachable moment. I was on the computer and my son entered the room. He noticed one of those sidebar ads that pop up based on keywords (in this case, “autism”), and a picture of a young boy caught his eye.

“What’s that?” he asked.

“It’s a little boy,” I replied.

“No,” he persisted, “what does it say?”

My pulse quickened and something inside me said, “It’s time.”

I answered him, “autism resources,” and I felt the weight of the words as they exited my mouth and hung there heavily in the room, waiting to be fully revealed. After thinking for a moment, he asked the question I had long expected, “What is… autism?”

I took a deep breath, and everything seemed to freeze. It was almost as if I was outside the situation, looking in, knowing the importance of what was about to happen and that it would change our lives forever. I had prepared exactly what I wanted to say, yet I still felt my heart pound and my throat tighten. I was keenly aware that the manner in which I presented this information would be crucial. In the next few moments I had the power to hurt, or help, his self esteem.

I looked into my son’s beautiful face and began to speak, “Autism is a way that some people’s brains are wired. It may make them think or feel a little differently than other people. It may also make it difficult to concentrate if there is noise around, or make it hard to eat foods with certain textures, or might make someone want to chew on things that aren’t food. They might have trouble calming down if they get really excited, or need to walk in circles. They might even get REALLY upset if they are playing a game and don’t win.”

By that point, my heart was thumping so hard it felt like it was battering against my ribcage, trying to be set free from the confines of my chest. I had been describing specific ways that autism affected my son. I wondered if any of it would sound familiar. I then asked the big question, one that I hadn’t planned, not sure how he would respond, “Do these things sound like anyone you know?”

“Yes,” my son replied, but then stared silently at the wall. “Who?” I asked him. He paused, looking a bit unsure. But then he gave a little half-smirk, and replied, “Me.”

With a mixture of sadness and relief, I reached out and gave my child a reassuring hug. I told him, “I love you so much and am so very proud of you. You are smart and good and funny. Autism just explains why sometimes things feel difficult for you, why you might get so frustrated, and why you have an extra teacher come help you at school.

But autism not only causes you some frustrations, it also makes you unique. It helps you have an amazing memory. Even when you were very little I could read a book to you and you would have the whole thing memorized after just hearing it once.” He seemed pleased to hear that.

I pondered what else to say, and added, “Autism affects people different ways.” I then stressed to him, “Different isn’t bad, it’s just different.” He started to walk away, and I called out to his back, “Do you have any questions?” but he was already gone.

I sat there, alone, stunned and a bit surprised. It had finally happened. I had thought the conversation would take longer, but apparently my child had heard all he needed to. I wondered if I did it right. I wondered if he got it, or if he felt sad, confused, or overwhelmed. I felt a strong urge to cry.

A few minutes later my oldest, the sensitive caretaker of a big brother, came into the room with a concerned look on his face. He exclaimed, “Mommy! He said ‘autism’!” I reassured him, “It’s okay. He asked about it after seeing the word.” “Oh good,” he sighed, “I was worried he heard you say it to someone else. You told me you weren’t going to tell him yet.” “Well,” I replied, “the opportunity came up, and I thought he was ready.”

We walked downstairs together, protective big brother and I, to continue the conversation. We approached my unique, creative, exuberant boy; a boy who also happens to have autism. “What did you tell your brother?” I asked, as he sat at the kitchen table and occupied himself with a roll of Playdoh. He didn’t look up from his work, and replied nonchalantly:

“I have Autism. And it means that your brain works a little bit different than other people. But different doesn’t mean bad. Different just means different.”

Tears filled my eyes as I hugged my son tight. I think he gets it.

A version of this post first appeared on the website Seriously Not Boring.

You can also find Jennifer at her Seriously Not Boring Facebook page.  

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When 2 Teens Found a Friendship No One Believed They Could Have

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With all the stories about bullying and all the stories about the horrifying things the human race can do to each other, let me bring you another side, where friendship needs no words. This is what should be shared 6,000+ times.

Meet Kreed, who is medically fragile, has autism and uses a device to communicate. And meet Skyler, who has Usher’s Syndrome, is deaf, losing peripheral vision, has autism and currently does not have a means to effectively communicate.

 

Both boys have been underestimated their whole lives.

two friends eating

People thought they would never be able to have any kind of friendship. They said they wouldn’t understand. They don’t have compassion. They don’t understand how to love.

People have also never understood why Kreed is so loud and makes the movements he does. Skyler has faced challenges most people couldn’t dream about, yet they wonder why he makes the sounds he does and doesn’t listen and seems to go from one thing to the next. But just because we don’t understand, doesn’t make their connection any less. Friendship doesn’t always need words.

Here is the photo that proves them all wrong.

two friends holding hands walking in the hall

 

Skyler was a little unsure of the hotel surroundings, so I asked Kreed if he would help. Kreed walked over, grabbed Skyler’s hand and they walked in together. Skyler trusted Kreed, and Kreed knew Skyler needed his help.

It was amazing to watch — two boys the world has told would never accomplish things such as friendship and love and meaningful relationships.

In a world where kids sometimes bully kids with disabilities or where adults make fun of those who are different or use hate speech, here are two boys who have found a way to interact without needing words.

They feel.

They care.

They love.

As a special needs parent, I hope and pray that one day my child will find his “tribe.” Someone he can be himself with. Someone who doesn’t mind his quirks. Someone who is just fine with exactly who he is. Kreed doesn’t care when Skyler gets as close as possible to him or when he reaches out to touch him. Skyler has no idea how loud Kreed is and never gets annoyed. He’s realized Kreed is different and similar to himself. So he watches Kreed, follows Kreed and in general, they want to be around each other.

They don’t need words to convey what a comfort it is to find your tribe. They just know. And it’s beautiful. I’ve never seen anything more beautiful in my life.

friends playing on the trampoline

 

So when we say these kids have no limits, we mean it in every possible way. From communication, to cognitive ability to friendship and love. I don’t care that’s its taken 17 years for Kreed to find a friend because this friendship was worth the wait. I can’t wait to see what the future holds for these two.

And I thank them both for restoring hope and love back into the human race.

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.

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How My Childhood 'Obsession' Inspired Me to Pursue a Career in Accessible Travel

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Ever since I was a young child, I would perk up when I heard the worlds “vacation,” “airline ticket” or “hotel.” It’s still hard for me to contain my excitement. When I was young I was diagnosed with having Asperger syndrome and, as we know today, sometimes people with the condition develop obsessions. Travel just happens to be my passion. Notice how I turned the word “obsession” into the word “passion?”

Back in junior high school when most kids were home watching cartoons, I downloaded and began using easySabre, an older version of what travel agents use today to book clients on their trips. I also received an Official Airline Guide from the San Jose International Airport as part of their monthly newsletter. This OAG allowed me to see what flights operate out of the San Jose airport, and I would memorize the airport codes.

I would call up automated flight information services back in the day before speech recognition technology existed. Because you used to have to spell out the name of the city you were departing, I kept thinking to myself, “How could I make this accessible to someone with a disability?”As the soothing voice of the automated system read back the flight details, I began creating a spreadsheet.

In 1998, my parents took a three-month trip to Europe. I planned all the details. Mind you, this was before online booking services such as Expedia were popular. I fondly remember getting our Eurorail train passes and still recall the travel agent using her computer to book our tickets. I watched her in amazement. That was the moment I realized I wanted to be a travel agent.

Fast forward to September 2008. I found a degree program in assistive technology from California State University, Northridge. I was amazed by all the new technology and communication devices, but I always had travel in the back of my mind.

I began to look into ways assistive technology could be used for travel. I considered topics such as how an individual who is nonverbal would access the various travel services and museums. I kept asking myself questions like how the museum could translate audio guides onto a device so users could touch pictures and the device would speak a selected phrase.

Last January, I earned a certificate in Travel and Tourism and passed the Travel Agency Proficiency Exam, making me a certified travel agent. In July, I joined Cruise Brothers as my host agency. I work on selling wedding cruises.

This past October, I decided to learn more about communication devices for people who are nonverbal. I searched YouTube for “Communication Devices Assistive Technology and Autism.” This is how I found “Kreed’s World: A Complex Journey Through Autism,” which is managed by fellow Mighty blogger Erin Polk. I spent hours reading the Facebook page.

Erin and Kreed have inspired me not only to dive deeper into the field of assisted technology and travel but also to find more ways to travel the world. I would love to work on TV shows and create “How To” videos with various travel vendors from airports, airlines and hotels and tourist attractions to facilitate travel for people with disabilities.

The field of accessible travel is broad, and I would like to continue to focus on how communication devices play a roll in it. My dream is to work with DynaVox, the communication device manufacturer. I would love to have people like Erin and Kreed work with me on my mission to make travel more accessible everywhere.

danielonn

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Why I Want the World to See My Daughter's Experiences With Autism

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There was a woman who ostracized me for not keeping my child private. But yet she posted the video on her page along with many other articles of other children with disabilities all over her page. Why did she single me out? I don’t know. But I stopped and thought about it.

This is why I “real share”: autism isn’t going anywhere, and awareness is needed as numbers rise. How will people become aware if they don’t really see it? It’s not like Rain Man or any other stereotypes that autistic people get… I show and keep it real! And I don’t feel like I’m doing my job as my daughter’s advocate if I don’t keep it real!

I’m not afraid. I posted two awareness videos, and one of them helped a mother see that her child was like mine and, after seeing my video, she’s now getting her daughter evaluated. I’m about EI Awareness and if I can help one parent get his or her child evaluated, it’s worth it.

So, no, I’m not scared. I was at first and debated whether or not to post, but when it was published, parents were thanking me and saying they felt alone and that my video made them feel like they were not so alone. Before my page, that’s how I felt… alone. Now I’m not. I’m helping people and it’s helping me. I’m spreading awareness!

I have a college student doing a Powerpoint presentation on Zoey’s video singing “Twinkle Twinkle Little Star” to help bring awareness about music therapy. I show it ALL! Why? Because I’m an advocate, and not just for my child… for every child. If we all just hide away without showing the reality of autism, then we are not advocating awareness.

Autism is here… it’s real… and it’s time to accept it!

I share it all for her. I want her to look back and see how she fought and how truly amazing she is. Yes, there are times of frustration or meltdowns… but then there are the moments that I can watch over and over and cry because my severely nonverbal child sang “Twinkle Twinkle Little Star.”

That gives me hope and I want others to see it and have that same hope!


Follow this journey on the Facebook page Life With Zoey.

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To the Friend Who Doesn't See My Son as 'the Weird Kid With Autism'

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They say if you have one or two really good friends, you’ve got it made.

Well, if that’s true, then TJ, our 14-year-old with autism, has got it made.

For your typical 14-year-old, having a friend means hanging out at each other’s houses, texting, chatting on the phone, going to the mall and going to school events like football games or dances together.

For my son, a friend means a very different thing. 

To be TJ’s friend, you have to be patient. TJ may not talk to you that much — or at all.  He really likes talking about things he’s interested in but will forget to ask about things his friend may be interested in. TJ usually has his favorite movie or TV show running through his head, so he may blurt out lines at random times and make no sense. He does a great job at school, holding it together and contributing as much as he can, but when school’s out, his favorite thing is to play by himself at home. No hanging out for TJ. When he does, it’s with me, and I’m pushing his social interaction agenda.

TJ has had three or four good friends since he started school. These guys have joined him for “lunch bunch” with the speech language pathologist (SLP) so TJ could practice having a two-way conversation. They’ve practiced walking with him after school to the library in the center of town so TJ could feel more independent. They’ve helped him out here and there throughout his entire school day to keep him on track so he wouldn’t get in trouble for not paying attention or for fidgeting too much.

I’ve always said that these friends are TJ’s heroes. I’ve always been so grateful for these heroes — more than they will ever know.

One hero stands out. His name is Colby.

Colby and TJ met in sixth grade in a shared class, where Colby found TJ drawing (his favorite self-soothing activity). Colby asked what he was drawing and then asked if TJ could draw something for him. 

To Colby, TJ was never “the weird kid with autism.” To Colby, TJ was always just TJ. Funny. Sensitive. Kind. Fun to be with.

In seventh grade, I gave TJ $5 for an after-school bake sale. He was so excited; he couldn’t wait to buy as many chocolate chip cookies as his $5 would allow.

But somehow, throughout the day, he lost his money.

Colby found TJ crying. He explained how he lost his $5 for the after-school bake sale.

Without a word, Colby reached into his own pocket, grabbed $5, crumpled it and dropped it at TJ’s feet.  Then he pointed to it and asked, “TJ, is that it right there? On the floor? Is that your $5?”

TJ stopped crying immediately and picked up the money. He was so happy. 

And so was Colby — so happy to have helped his friend. I didn’t even hear about this story until about a year later. Colby didn’t do it for any praise. He did it to help his friend.

Colby’s the kind of of friend I always dreamed TJ could have. I never thought it’d happen. Colby and TJ are quite simply, buds. Colby’s mom calls them “Peas and Carrots.” That’s how well they go together.

two boys standing in front of brick wall

These Peas and Carrots are now in ninth grade at the big high school. Colby came with us to tour the school this summer. It helped TJ feel less anxious about starting a new school. 

Colby plays football. He’s also a wrestler. He has lots of friends. His social calendar is packed.

He also volunteers with the Unified Sports program at the school, working with kids with special needs in various sports programs like bowling and bocce — a program that makes sports fun for these kids. 

TJ doesn’t take Unified Sports. For him, when school is done, it’s done. TJ wants to go right home. He chose to participate in an after-school club about wildlife animals, but it was too long for him, and he now only attends half the meeting each week.

Even though activities take these two in different directions, they always find ways to connect. Colby and TJ and a few other boys meet with TJ’s guidance counselor for lunch. Colby and TJ share a math class, so they get to see each other every other day. And at Christmas, Colby continued his now two-year tradition of bringing TJ his own ornament of his favorite cartoon. This year it was from “South Park.”

TJ loves it and smiles every time he sees it. He didn’t want to put it away with the rest of the ornaments.

But the best part is that to TJ and Colby, they aren’t doing anyone any favors by being friends. They just really like each other. They truly care about each other. And they’ve got each other’s backs no matter what.

As Colby always says, “I just really like TJ. I am so proud to be his friend.” 

It’s more than this autism mom could have ever hoped for. 

Thank you, Colby. You are our hero.

Follow this journey on Laughing… Like It’s My Job.

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What It’s Like to Grow Up With Autism

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What is autism to me?

I was diagnosed with autism at the age of 2. Though some people consider that to be far too young for a diagnosis, I think I’m one of the lucky ones. Some people, especially girls, don’t get a diagnosis until much later in life (and may still not have one) and spend their whole lives wondering why they’re so different from everybody else. I got to know right away, and I’m glad.

All my life, I’ve had very strong interests in particular subjects. At the age of 6, I had such a strong interest in the video game character Yoshi, I actually used the name Yoshi when inventing a new word: “yoshiablic.” This word was meant to describe pleasant feelings I get when engaging in my interests. Throughout the years, doing so involved doing a lot of research on my topic of choice.

At age 11, I would remember the grand opening date, the location, the number of stores, and the square footage of many malls, such as Lloyd Center in Portland, Oregon. I have had a variety of interests, including towers, bridges, roller coasters, cars, cities, malls, space shuttles, flowers, video games, the Titanic, volcanoes, astronomy, origami, cats, and bows. My latest interest is in particle accelerators used for scientific research (such as the Large Hadron Collider).

I have many talents as well. I graduated high school on time with a 3.81 GPA. I have extensive artistic capabilities, and an enhanced ability to understand myself. When it comes to social interaction, however, I tend to feel awkward and unwanted. I certainly do have a lot of friends, but I’m highly critical of myself and how I interact with people. Also, I tend to have more emotions than I know what to do with.

This was my downfall in school, as I had meltdowns on a fairly regular basis. My social and emotional issues have led to low self-esteem in this area. I cannot count how many times I’ve had significant issues at school that warranted a call to my mom. Schools throughout the years have handled me differently. In my opinion, middle school was the one that handled me the best.

The teachers there allowed me to be independent, encouraged me to engage in my interests, and had a safe place and safe people for me to turn to in times of stress.

As for the mistakes schools made with me, in high school, my independence was taken away when they required me to have a one-on-one aide when I went to class. This occurred following a severe meltdown in which I had cut myself out of anger. I felt embarrassed and that the teachers who forced the aides on me were very condescending. All they ever did was focus on the negative. Every time I tried to mention a way I had improved, they would either object to what I had to say or redirect the conversation to my weaknesses.

At the ages of 10 and 11, I was subject to what I feel was the worst mistake teachers have ever made with me. I had my interest in malls at this time. The teachers felt that my interests were a distraction in the classroom, so I was therefore not allowed to even mention them while in the school building. Until teachers made this rule, which occurred twice and lasted around a month each time, I actually enjoyed going to school. I felt violated as a result of this rule, and spent the next 11 years dwelling on it and trying to forgive the teachers that made the rule.

stephanie keyes the mighty Today, I use my experience with this wrongful rule to advocate for other autistic people. As unacceptable as this rule was, it taught me that autistic people are inseparable from their interests. Trying to take away or suppress our interests violates who we are and is almost criminal. I emphasize the importance of interests when I am asked how to best deal with autistic people. I believe interests are a natural, built-in coping mechanism that can enhance the lives of autistics.

So what is autism to me?

It’s a human brain programmed in a way that is far different from the average person. These differences often put the individual at a disadvantage, much like if an Android phone was in a world run by Apple phones.

Autism may have common aspects among people diagnosed with it, but no two autistic people are exactly alike. It is a mistake to assume every autistic individual is the same.

Some people (like me) struggle with extreme emotions and social awkwardness, while others can’t even speak or care for themselves. No matter the differences, no matter the struggles, we are all human and deserve to be treated accordingly.

The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post [email protected] include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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