The Mighty is asking the following: Create a list-style story about the holiday season related to disability, disease or mental illness. It can be lighthearted or more serious — whatever inspires you. Be sure to include an intro for your list.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.
There are so many different myths and misconceptions about autism, so here are 10 things I wish people knew about my autism:
1. I am first and foremost a person.
I am not a diagnosis. I am not autism and then Lottie. I am Lottie, and I have autism. Ask me what kind of language I want you to use. Some of us like person-first language, so person with autism. Others like autistic person, and it is very upsetting to us when you don’t use our preferred language. But also respect our choice of language even if you don’t agree with it.
2. I do not achieve things despite having autism.
I achieve things with my autism. Who could say I would have done all that I have without it? My autism has never held me back and therefore my achievements have never been despite my autism. However, they are not because of my autism. They are because I worked just as hard as the next person, and my autism was just, well, it was just there.
3. Please avoid asking me what it’s like to have autism.
I can explain exact things like what it feels like having a meltdown, but when you ask me to explain what it’s like to have autism, my answer will be “it just is.” It’s like me asking you what’s it like to live without autism. You’ve never experienced life any other way and therefore it just is. To help us and be our friends, you don’t need to understand what it’s like to live in our shoes and why we do what we do. You just need to accept that this is the way we live and that it makes sense to us.
4. When I am having a meltdown or shutdown, I have no control.
When I become overwhelmed, I have no control over my actions. It’s like a little man has taken over your brain and is now controlling you. You know what’s going on, but you can’t stop it. Please understand how frightening this is for us. We can’t process any more information at this time, so please avoid giving us extra instructions.
5. I can hold down jobs.
I am perfectly able to get and hold down a job just like you. I may struggle more with the social part of having a job due to communication difficulties, but that doesn’t stop me being a productive member of the workforce in whatever job I choose to do.
6. If I try to explain something about my autism, listen to me.
My autism is my autism. It is completely different than anyone else’s autism. Therefore, if I’m explaining something to you, please take me seriously and listen to what I have to say. Don’t just assume you know autism because your friend’s brother has it or you watched “Rain Man” or “Adam.” If you’ve met one person with autism, you’ve met one person with autism.
7. I am just as capable as you of being in a relationship.
My relationships may be different than most, since I’ll need to talk to my partner about things neurotypicals just “get.” But that doesn’t stop me from being in a relationship. I can be in a relationship, I can get married and I can have kids just like you. People with autism just need to be given a chance, and they may need you to completely rethink what being in a relationship is like.
8. I have the same feelings as you.
My autism makes it harder for me to express and understand my feelings, but that doesn’t mean I don’t have them. I still feel happy, sad, angry and frustrated. I am still capable of love and hate. I just struggle to express this to you, and I sometimes struggle to recognize it in myself. I still have the same sexual desires as you.
9. I do not need to be cured.
Autism is just a different way of thinking. I do not need to be cured; I need to be accepted for who I am and I will flourish.
10. If you want to talk to me, speak to me, not to whomever I may be with.
I am able to talk to you about anything. If you want to know me better or just want a conversation with me, then talk to me. I know about myself better than anyone else, and I can talk for myself if you want a conversation. My friends and family are not with me to be my voice; they are there to be my friends and family.
The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list.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.
One of the greatest myths about autism spectrum disorder (ASD) is that people on the spectrum lack emotion and empathy. Growing up, I always knew I was different. I wasn’t the best at making friends, but I somehow seemed to manage to develop meaningful relationships along the way. When I was 18 years old, I met someone who would change my life forever. Ours is a story that defies the myths that autism and love cannot coexist.
One year ago this month, I was officially diagnosed with autism spectrum disorder. December is my “autism anniversary,” and Isabella, my wife of nearly 15 years, shares our new journey together in this beautifully written letter that shows autistic people can love and are worth being loved.
I am writing you this letter almost a year from the time that you were first diagnosed with autism spectrum disorder. I just wanted to let you know how extremely proud I am of you as your wife.
First, because you were brave enough to recognize you needed to get evaluated and seek a professional diagnosis when you knew certain things weren’t quite adding up. So many are yet to take that step, so I really applaud you!
Secondly, I am inspired by how much work you’re doing to learn about yourself. I heard you say in the interview with on Autism Live that you have to learn who you are again at the age of 37. I can’t even imagine what that must be like. I applaud you for just having the courage to take that big step and embrace who you are — “fearfully and wonderfully made” — and being OK with who God created you to be and using all your God-given gifts and talents to learn more about the world you have became a part of.
Your response is going to help fill some big gaps, and you’re already becoming such a huge voice for a platform that is often times forgotten about and never ever talked about. I see all the work you’re doing and how committed you are to autism spectrum disorder issues. Your work in the autism world is going to make huge footprints and lead the way for so many who are already a part of it or will become a part of it.
One thing I realized once we started this journey is that I am having to learn who you are all over again. I have known you for 18 plus years, and we will have been married for 15 years in January next year. While your diagnosis does mean having to learn a new you, I am still googly-eyed over you!
Some would question me and say, “Wow, aren’t you concerned this isn’t the same man who you married?” And I would say, “No, this is exactly the man I married. We have just arrived at a point in our life where layers are being peeled off and growth is taking place. Our package comes with ASD as part of that growth, and I’m OK with that.”
As a matter of fact, this has helped to answer some questions I used to have and would put it in the “Lamar is so weird” category. Now, with the help of therapy, books and you teaching me more about who you are, I’m able to understand the “weird.” And believe it or not, it’s teaching me so many things about myself as well. Is it a challenge? Yes, but it’s also helping me to grow.
I especially liked how in one of your articles you talked about just seeing or recognizing that a coin has two sides and having the ability to see the other perspective. That was really an eye-opener for me, because I think we say this all the time about so many things. But in reality, living it can be hard because we’re always thinking that only our perspective is the “right” one. I have to confess that I am not always right, and you aren’t “weird.” We’re just wired differently, and I know we compliment each other well as we continue on the journey. And it can only get better.
There isn’t a day that goes by that I don’t think to myself, “Wow, when I was doing this or when I responding like that to Lamar, I had no idea how much I was stretching you beyond your comfort zone.” I want you to know I am really sorry from the bottom of my heart. I read and re-read your articles you’ve written for The Mighty, and I sometimes think about encounters we had. And it makes realize how small I really was in some of those situations. I want you to know my ignorance to you being on the spectrum isn’t an excuse, but your confirmed diagnosis has permanently removed all my ignorance. And it’s teaching me so many ways that I can find the right balance in making your journey and our journey together everything I believe God intended for it to be.
I love you so much, and my life would not be the same if you weren’t a part of it!
#youarestrong #youareawesome #youaregreat
Isabella M. Hardwick
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.
Me: “Are you going to try turkey on Thanksgiving?”
Colin (my son): “I don’t think so.”
Me: “Well, Aunt Jennifer is making Tofurkey. It is like pretend turkey.”
Colin: “Then I will ‘pretend’ eat it.”
“Selective eater.” Yeah… that is a nice way to put it. You will receive advice about this one all day long, and it will always be the same thing. “If he gets hungry enough, he will eat it.” Maybe so with some kids, but with kiddos on the spectrum, sometimes you just have to wave the white flag and do the best you can. The sensory aversion can just be stronger than the hunger.I have littered this post with pictures of my attempts at being creative with food.Most met with rejection.
I can’t tell you how many people have given me books about clever recipes to up the nutrition in some kid-friendly foods. Just chant to yourself, “They mean well. They mean well.”
Let me just share some of these suggestions…
Swap mashed potatoes with mashed cauliflower: How did this ever get published? Yeah, no one will ever notice that the mashed potatoes now smell like feet. That being said, I still can’t get the kid to eat potatoes, and they are full of delicious, booty-expanding carbs! This is a great source of shame for my Irish husband, who still holds out hope that when the kid turns 21, he will then have a palate refined enough to enjoy a Guinness with his father.
Mix zucchini into meatloaf: Yeah, because all kids love meatloaf. “And I would do anything for love, but I won’t to that.” In this case, “that” refers to the futile effort of trying to convince the kiddo that meat can be molded into a bread shape and be palatable. Then he will not only avoid the meatloaf, he will stop eating bread.
Hide veggies under the cheese in your pizza: OK, let us just gloss over the fact that my son won’t even touch pizza. Under the cheese, really? Are you fooled when the kid hides the peas under his napkin? Didn’t think so.
I could go on, but I’m sure you get the idea. I read an entire recipe book with tricky ways to get your kid to eat healthy things, and every “kid-friendly” food was something my son didn’t think was very friendly at all. However, the idea of being sneaky and deceitful did appeal to me. Sound terrible? Yeah, how are Santa and the Tooth Fairy doing? Check your pants, parents, ’cause they may be on fire. It is our right, nay, our duty to fib to our kids from time to time.Ask the grandparents.They call it “tradition.”
I’ve been known to pull a fast one with something I call “ninja food.” Everything’s better with a cool name. It’s called ninja food because you won’t even know it’s there and then — BAM! — you just ingested some vitamin A! One of the four meals my son finds edible is the good old blue box. I puree some ninja carrots.It only works if the color is consistent. I’m only in real trouble if he ever tastes the real thing, loaded with much more delicious things, such as milk and butter. Until that day I will happily watch him unknowingly wolf down half a dozen baby carrots while rubbing my hands together and twisting my invisible mustache like the evil genius I am. However, just like the ideas listed above, ninja food won’t work for everyone.It is merely a few steps above veggies in meatloaf.
I often find myself trying to find out what exactly is so offensive about a particular food. My son gives me clues such as, “It tastes too high-pitched.” Another one, “It is too much like a volcano.” I eventually figured out that “high pitched” means tart. I thought volcano meant hot, but it turns out that it means the food tastes like vinegar. (We would make baking soda and vinegar volcanoes in the backyard. Those he would taste.)
So, if all of that well-meaning advice is no good, what could I possibly have that is any better? Well, I want to tell you it gets better with time. People tell me that, but I don’t honestly know. What I do know is this: It does us no good at all to get sucked in by guilt. Stop looking at those perfect bento boxes filled with low-fat, high-protein, zero-GMO, gluten-free goodness on Pinterest and feeling bad that your kid just ate a can of Pringles along with exactly seven raisins placed neatly in a row. Sometimes it takes a lot to make that raisin thing happen, I know.
It is between you and your doctor to handle the health of your child. The judge of that should not be the little miss yoga pants and coconut water, side-eyeing your grocery cart. The long road of parenthood is lined with billboards, all telling you that you’re doing it wrong.Trust yourself.Know when to push, and know when to pull back.
One more thing.I know your secret.I know you fantasize about taking your kid to a casual dining restaurant and watching them gobble up food that was not painstakingly prepared by your loving, yet weary hands.Do yourself a favor and don’t hate those who make it look so easy.Comparison will kill your joy. What joy, you ask? The joy of knowing their bill will be much higher than yours since you played sherpa and smuggled in a full can of Pringles and seven raisins.
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 Submit a Story page for more about our submission guidelines.