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10 Lessons in 10 Years From My Son on the Autism Spectrum

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​My son, Ryan, was diagnosed with autism 10 years ago. Ten years, it doesn’t even seem possible. In some ways, it feels like a long time ago and in some ways it feels like just yesterday I was sitting in that psychologist’s office wondering if her garbage can was full because I felt I was gonna puke in it.

Ten years — it’s a lifetime, it’s a blink.

I remember the years of worrying, Google obsessing and watching for every single sign Google told me to look for prior to that 10 year diagnosis. Why is he doing that? Why isn’t he doing this? Why, why, why? Little did I know all those question would be answered with a six letter word: autism. And those six letters would have an impact on him and on me I could have never guessed 10 years ago.

Ten years — it’s a lifetime, it’s a blink.

There are still days I ask “why,” but mostly I ask “what.” What do we need to do to get from here to there? What supports need to be in place to help him succeed? What can I do to help him succeed? What does he need to do for himself to be successful? What can we do to help others? “What” can sometimes be as difficult as “why,” but I have learned after 10 years that many of those answers are up to him, and that has been a tough lesson for both of us to learn and accept.

Ten years — it’s a lifetime, it’s a blink.

These past 10 years, Ryan has come far and so have I.

Here are 10 things I’ve learned these past 10 years while loving my child with autism:

1. It’s not about me.

Sure, his autism has an impact on me and our family, but what he needs, what he wants, what makes him happy is about him, not me.

2. It does matter that you call it autism.

For years I had therapists say, “It doesn’t matter what you call it, just getting him the support is what matters.” I have learned that what you call it is exactly what helps get supports started in the first place. So yeah, it does matter what you call it. More importantly, one day it will matter to him what autism is and give him a better understanding how it has impacted his life.

3. What matters is how he defines the word “friend.”

4. “Different, not less” is true, but you have to see it, feel it and believe it.

5. The debate over “a person with autism” or an “autistic person” is not up to me, you or the autism community, it is up to each individual with autism.

If an individual with autism is able to tell you what they prefer, ask, don’t decide for them.

6. Alone and lonely are very different.

It may depend on the day, the moment and the circumstance. The only way to know, is to ask.

7. “Lack of displaying emotions” or displaying emotions in a way you don’t expect, does not mean someone with autism is “lacking” emotions.

How those with autism demonstrate and display their feelings may be different, but their feelings are never less.

8. Never say “never” and never believe anyone who tells you “never.”

I mean it, never.

9. There are many beautiful ways to communicate feelings without ever uttering a word.

10. Autism is not a one way street.

It is not only the job of autistic individuals to learn how to adapt to “our” world, it is also our job to understand and accept that although individuals with autism may see and interact differently in “our” world, they are just as entitled to be a part of it — free of judgement and condemnation.

​Ten years — it’s a lifetime, it’s a blink.

I never found out if that psychologist’s garbage can was full or not 10 years ago, because although I felt like puking, I didn’t. I guess somewhere, my heart took over both my brain and my stomach and realized my son needed me more than my churning lunch needed to see the light of day. That’s not to say there weren’t 10,000 times where I failed him, where I was selfish, misguided, tired and just plain wrong. But he always brought me back. He always guided me to where he needed to go next, just as I know he will in the decades to come with 10,000 more lessons to learn.

I look forward to learning more as this teenage boy transitions to adulthood, while I watch this beautiful transformation with an open mind and an open heart. Thank you, Ryan, for ten AWEsome years, and here is to many, many more.

Ten years — it’s a lifetime, it’s a blink.

I think I will try and prop my eyelids open for this next decade.

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To My Brother on the Autism Spectrum as I Move Away From Home

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Life has never seemed easy for you. Our parents knew there was something different when you were 3 years old and not hearing. I was 6 at the time and didn’t understand autism like I do now. I thank you for helping me understand.

I remember how sad Mom was when they told her you might never talk, but you did.

I remember how frustrated Dad got because you didn’t make many friends, but now you are happy.

I remember how mean some of the kids were to you, and the first time someone called you the “r” word. At the time, you didn’t understand it was wrong. Now, when people call you that, you get upset but you tell them why it’s wrong.

I remember as a kid not quite understanding you were different, but loving you none the less. Sometimes you can be hard to understand, but not any more than our other siblings.

I remember your high school graduation and Mom’s tears of joy because people told her you would never graduate high school.

I remember when I got sick. You kept asking why I wasn’t getting better. Now you know I never will, but you show empathy and unconditional love for me. I will never forget that time a couple months ago when you were walking home from work in the cold, but you called me to ask if I wanted you to pick up a sandwich for me on the way home.

Finally, I remember telling you I was moving away. I still don’t know if you fully understand I’m not coming back for more than a week at a time. You and I hugged for what felt like an eternity and in that moment I realized what a remarkable young man you have become. You have proved so many people wrong. I hope life gets easier for you, but sometimes being an adult means rising up to face more challenges. I have no doubt you will.  And no matter how far away I am, I will always be one of your biggest supporters and cheerleaders.

Editor’s note: This story has been published with permission from the author’s brother.

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5 Autism Stereotypes I Fit, and 5 I Don't

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I wanted to write an article for April, for Autism Awareness month. Of course, I’m a bit late to the party, but I spent awhile deciding what to write about. Finally I settled on it: autism stereotypes. There are a lot of autism stereotypes out there, some good and some bad. But they can never apply to everyone. So I decided to break down 10 autism stereotypes I’ve come across — five I do fit, and five I don’t — to help prove this point.

I don’t like math. And I’m not good at it. There seems to be a stereotype that anyone with autism has to be a whiz at math. I’ve had people, when told about my autism, say things like “Well, at least you’re really good at math!” Nope. Math has always been my worst subject. For some reason, as soon as I see numbers, my brain wants to shut down. I took a logic class in college that replaced numbers with letters, and it made so much more sense to me. Still, this stereotype is so strong, I’ve had people who suddenly seem to doubt my diagnosis because I’m not a math genius. It’s important to remember that everyone has their own strengths and weaknesses — and yes, of course this applies to those with autism as well.

I do love animals. I’ve always been able to relate to animals better than to people, ever since I was a kid. There’s something about the way animals accept you and don’t judge that is comforting. Their body language is simple and easy to understand for me. Frankly, I understood cat body language long before I understood human. They rarely try to hide what they’re feeling and they’re very predictable. Perhaps because of all this, I find it easier to feel empathy towards animals than to people.

I don’t get confused by sarcasm. I have a t-shirt that says “I Speak Fluent Sarcasm.” Because I am a very sarcastic person. While it is common for people with autism to misunderstand and be confused by sarcasm, that’s not always the case. I’m a writer, I get sarcasm, I get irony, I get figurative language. I’ve always liked learning about words and how to put them together. I think this may actually stem from my autism — I had such difficulty expressing myself that I was eager to learn as many words as I could to express myself as best I could. I now have a tendency to use occasionally throw bigger, fancier words into conversation — not to show off, but to make the exact point I’m trying to. Fortunately, this trait really helps me as a writer.

I do have trouble with body language. I am getting better at this, but I do sometimes struggle. One big example I remember is when I was having an argument with an acting teacher of mine. He called my dad afterwards to tell him that, not only was I disrespectful, but I also walked away in the middle of the argument. When my dad confronted me, I explained I thought he was done talking. He had leaned back in his chair and put his head down, and I read that as “I can’t deal with this right now,” so I thought I was supposed to leave quietly. Apparently, that wasn’t what he meant.

Looking back, I can only assume he was trying to think of his next point, but at the time I was 100 percent convinced that he wanted me to leave, and that it would be the best thing for me to do.

I don’t hate parties. I actually like parties. When I was a kid I loved when we’d have parties at our house. My favorites were the Halloween parties we’d have, where we’d invite everyone in my grade. We’d have a haunted house room, a fortune teller room, a scavenger hunt, a piñata, costume contests… they were always the best. And I still like parties, though I may not be the biggest social butterfly. I enjoy chatting with small groups of people, participating in activities, and then leaving when I’m tired. I often need a day to “recover” from the intense socialization, but it’s usually worth it.

I do need time to myself. I need more time to myself than the average person might. That’s how I recharge. Again, it’s not that I don’t like being social. But it’s like a person who loves to run marathons (I have to imagine this, since I personally hate running). They may love running them, but they have to recharge in between or they won’t have the energy or capacity to run. It’s the same for me and socializing. I need time, by myself, doing something like playing video games or watching TV, to restore my energy.

I don’t hate talking. I tend to be pretty chatty, actually. Especially in classes — I’m the one who always has their hand up. I have an opinion on everything and always want to share. When I was in fifth or sixth grade, I wasn’t allowed to comment on other kids’ presentations because I had a tendency to correct them. It wasn’t about showing off or embarrassing them, but the idea that someone would leave the room with inaccurate information bothered me! Nowadays, I tend to strike up conversations when I’m bored.

I do have specific interests (that I love to talk about!). I’m especially chatty when you get me talking about my interests. If it’s about a video game I play, a musical I’ve seen, an animal I love, or a television show I watch, I’ll talk your ear off. Paired with my difficulty in understanding body language, I may ask you if you’re bored, since I have a hard time telling. And don’t be afraid to be honest. It won’t hurt my feelings, and I’ll just end up frustrated that I upset you.

I don’t lack empathy. Going off that last point, while I sometimes struggle to express it, I do have empathy. I care about what other people are feeling and am, deep down, a people pleaser. I have a bad habit of putting other people’s need ahead of my own, and I hate conflict. It’s ironic that I was often thought to be a troublemaker as a kid. In reality, the “trouble” I caused was always because of misunderstandings — not because I actually wanted to upset anyone! I can actually be a rather meek person and will usually let someone else “win” an argument just to end it. Of course, if it’s something I’m passionate enough about, that can be a different story.

I do have meltdowns. If I’m ever rude or mean, it’ll be for one of two reasons — either you’ve caught me in a really bad mood (we’ve all been there), or I’m having a meltdown. When I have a meltdown, generally caused by stress and/or sensory overload, I lose quite a bit of control over my body. I may lash out physically or verbally, all while feeling terrible about it. My brain is telling me to stop, but my body doesn’t seem to listen. I’ve gotten better at preventing and controlling my meltdowns over the years, but I still slip up from time to time.

So, that’s my list. I enjoyed writing it, and it really made me think about different conditions, and how multiple people with the same diagnosis can still be so different. I encourage anyone who has a diagnosis of any sort to stop and think about making your own list. You don’t need to share it, but it can be an enlightening experience.

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What Overstimulation Feels Like for Me as Someone on the Autism Spectrum

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As someone on the autism spectrum, I can get overwhelmed and overstimulated at times. This doesn’t always deter me from wanting to join in large social events, however. (I personally tend to be a social butterfly.) So when my friends asked me to join them at one, I decided to try.

We got onto the train that would take us to the event, and automatically I became a bit nervous. The train was much more crowded than usual. By the time we arrived at the station, I was feeling overwhelmed by the large amount of people and movement.

I began to drift away in my mind. I put on my sunglasses even though it was raining, trying to reduce the visual input. Soon after, I simply grabbed onto my friend’s hand and they led me through the crowds. Some music started, and so I put in earplugs. But it wasn’t so much the noise that was bothering me as the movement. Everything I looked at was moving in some way. By the time the event was over, I was still lost in my mind.

The best way I can describe my personal experience would be similar to being lost in a cave. The inside of the cave is my mind, and the cave walls are formed to block the sensory overload and overstimulation. I don’t want to be in there. I want to connect with the outside world. But I can’t find the exits. Or when I finally do, it’s only for a moment. I finally process what someone has said to me, and respond. But then I get sucked back into the cave again. It’s not always a choice for me, but my brain’s automatic response.

My friends helped me to get away from the crowds, and we ended up in a quieter restaurant for lunch. After maybe 30 more minutes of drifting in and out of my mental cave, I finally felt like I could process the world around me again.

Sensory overload and overstimulation is very real to me, and my reaction to it is not necessarily a choice. Only when I can get time and space in a calm environment will I be able to find the exits out of my mental cave I’m lost in.

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Autism at Work Summit Seeks to Increase Employment Opportunities

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Anka Wittenberg, Chief Diversity and Inclusion for SAP, stood at the platform to kick off the “Autism at Work Summit 2017,” part of an ongoing initiative the company started four years ago. The goals of the initiative were to:

  • Drive employment and greater inclusion for autistic individuals.
  • Share findings and best practices to change how companies
    define “talent.”
  • Create a platform for collaboration between the medical, academia, for profit and public sectors.

“It’s the only way we can find sustainable solutions,” she said.

The summit is a two-day event designed to spark that collaboration. Held at Stanford University, like-minded people have gathered to exchange ideas and find solutions. The hopeful outcome will be furthering what autistic adults need most in the workplace:

  • Acceptance
  • Accommodation
  • Quality of Life

The group will collectively look at how we can drive awareness towards acceptance and action. They’ll share ideas about the challenges, including how to scale the employment opportunities that currently exist.

“Every company, large or small, can benefit from having an autistic employee,” said Jose Velasco, SAP’s VP Products and Innovation, Autism at Work. “At the summit, we’re going to try and figure out how we can create durable employment opportunities.”

There’s been something happening with many employers. It’s a slow but steady shift but it seems to be gaining momentum. Companies are moving from having a charitable mentality, “We need to hire people with autism out of the goodness of our hearts,” to “We need to hire autistic employees because it’s a good business decision.” Yes, autistic employees are positively impacting the bottom line, and more companies are adopting this new mindset. The best part of the kick off was the panel discussion on “How Neurodiversity Drives Innovation” with John Elder Robison, Dr. Stephen Shore and Steve Silberman.

It was so exciting to see all three of these advocate authors on stage together to talk about this topic.

Collectively, they debunked the myths that autistic individuals aren’t capable of socializing, contributing to the workforce and making an impact for a company. “Instead of focusing on what we can’t do, let’s focus on what we can,” said Dr. Stephen Shore.

“I always wanted to blend in but I realized that everything that has contributed to my successes has been my differences, said John Elder Robison. “I see the great gift of being different.”

“Silicon Valley was built, in part, by autistic people,” said Steve Silberman.

So why do we need an Autism at Work Initiative?

John Elder Robison says that autistics have always been here. They are not new to society. Many have contributed to some of the world’s greatest inventions and discoveries. What’s changed is path to success, from academia to employment. Not everyone fits that formula and, as a society, we must break down the barriers and create new paths to employment.

“We’re just beginning,” said Jose Velasco, “When it comes to autism at work, we want to take the opportunities that are extraordinary today and make them ordinary.”

Here’s a link to watch the panel discussion. User: sap Password: bees

A version of this post originally appeared on Geek Club Books blog.

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5 Requests for Autism Awareness Month From the Mom of Autistic Children

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It’s April. A few years ago, this month held no special meaning to me; it was just another month. Then I had my son, the perfect addition to our family. Looking back, the only obvious sign was hand flapping until he started preschool at 3.

I started noticing small differences between him and his peers, and his teacher was picking up on things as well. Then started the process of evaluations at school and finally to a neurologist for a screening.

By this time, I think we already knew he was autistic. Like most parents, I started reading everything I could get my hands on.

The first six months were the hardest. Looking back, I believe it was my own feelings that made those months hard. My own expectations and dreams I had already planned out for him before he was even born.

Then my daughter was diagnosed; she was almost 10. How did I miss the signs?

Now I know it was my own ignorance about what autism is. I had to really step back and re-evaluate things. On one side, I had my daughter. She was doing well in school, has a really impressive imagination and love of reading, happy, healthy. On the other, I had my son — happy, healthy, lovable, smart — and I thought, wait a minute, if my kids are doing this great, then what’s the problem? Is there a problem?

The tides began to turn. I started towards acceptance and advocating to meet their needs. I’m not perfect, and I make mistakes, but they’ve always been the same kids.

Yes, parenting isn’t always easy, but I think all parenting comes with challenges. We’ve never known any other way of doing things, and maybe that makes it easier.

So I have a few requests for this month:

1. If you meet an autistic child, don’t say “I’m sorry” to their parents — their differences are not something to apologize for.

2. Don’t assume every parent of an autistic child is the same.

3. Don’t assume every autistic child is the same or has a special talent.

4. Don’t assume everyone lights it up blue. The feelings on this month are complex, and not everyone is on the same page.

5. Keep in mind that our kids may hear you and understand what you are saying. Even if they don’t speak in a traditional manner or seem to be in their own world. Believe me when I say they’re more aware than you might think.

They’re listening — what kind of messages do we want them to hear?

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