Ever since I was a kid, I’ve always wanted to help people. I’d be the first one to get the newspaper for my dad to make a fire. I donated every cent I had in my pocket to people ringing bells outside grocery stores for charities. (One year, I even stood ringing the bells, myself!) And whenever somebody misplaced something, I was the first person to start looking for it. Whatever I could do to make a difference, I would do it.
When I was 15, I was diagnosed with Asperger’s Syndrome. This form of autism can be hard for me some days. And during those difficult days, it’s OK for me to accept help from others. I may need an extra hand with keeping my room clean. Sometimes I need help at school or work because of communication issues. I can’t drive myself to many places on my own, and I must rely on my friends and family to help me travel long distances.
But none of this has changed my desire to help people myself.
I have made bracelets out of duct tape, and sold them to raise money for others with autism. I raised enough money one year to purchase an iPad with a protective case for a class of kids on the autism spectrum. Another year, I raised enough money to provide a scholarship for a child to attend an autism program.
I have also volunteered in various places for many years. In the past, I have volunteered finding books that people place holds on at my library. At my local chapter of The Arc, I helped in a class of 2-year-olds with autism. Currently, I help at Easter Seals making picture icons for kids who are nonverbal to communicate with. I also volunteer at my favorite museum, The Franklin Institute Science Museum, for their Sensory-Friendly Sundays.
I may be on the autism spectrum. And I may need help from others once in a while. But I love to help people myself, too. It just goes to show that even though some people might be different, they can still make a difference in the lives of others.
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]
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My son A-Man is autistic. Notice, I didn’t say that he “has autism” or that he “is a boy who happens to have autism” or even, as some people who are adamant about person-first language would say, “is a boy who likes goldfish crackers, Paw Patrol, playing catch, and happens to have autism.” He is autistic.
Simply saying my son is autistic can make me pretty unpopular with a lot of autism mamas. In fact, I’ve recently learned a lot of my beliefs and views on autism are radically different than the “typical” view autism parents have. When we first received my son’s official diagnosis, I started researching like crazy and talking to as many autistic teens and adults as I could. I wanted to know how they felt, what helped them growing up, what they wish their parents hadn’t done, what they wish they had done. To me, that just makes sense.
If a man wants to help a woman, he would ask that woman what she liked/disliked/needed/didn’t need. He wouldn’t go ask another man who happened to know a woman at one point. To me, it just doesn’t make sense. Of course, that man may have some decent tips, just like some parents of autistic kids have decent tips. But if they are not autistic, they cannot accurately explain how an autistic person feels or thinks.
After all my research and chats with autistic people, I’ve learned a few things parents could be doing that unintentionally hurt their child. Today I’m sharing why I say he’s autistic, and other things that make me an unpopular autism mama.
1. The autistic community prefers identity language.
I’ve written an entire post about why we choose to use identity language when referring to our children, and you can read that here, but for now I’ll give a quick overview. The whole point of demanding people use person-first language is to separate the person from the disability and to remind people that disabled people are real people. (Holy cow, how many times can I put “people” in a sentence?) On the first point, I don’t see a need to separate my child from his disability. It’s a part of what makes him who he is. I say he’s autistic just like I say he’s a boy. I wouldn’t say he “happens to have maleness.” On the second point, I think if you need to check your language to be reminded that anyone is a person, you have bigger issues. Also, working so hard to separate the person from their disability promotes the stigma that disabilities are bad things that “happen” to a person rather than a part of what makes them who they are.
2. We are selective about therapies.
A-Man receives speech therapy to help his expressive language delay so he can more effectively communicate. He receives occupational therapy to help him learn coping mechanisms and regulate his sensory needs. He will soon start receiving physical therapy to help him with his motor skills affected by his dyspraxia. He is not, however, receiving applied behavior analysis (ABA) therapy. Many parents see ABA as the holy grail of autism therapies, but I really don’t see it that way. If you’re unfamiliar, ABA is a therapy designed to change the behaviors exhibited by autistic children so they can more easily fit into society. Essentially, the goal is to help a child learn how to pretend to be neurotypical. (Quick side note: anyone who was offended that I don’t use person-first language probably didn’t have an issue that I didn’t just say “the goal is to help your child learn how to pretend to happen to have neurotypicalism.”) Some forms of ABA use techniques designed to silence autistic people and force them to comply. While there’s a time and a place for ABA, and you can find therapists who practice in respectful ways, it isn’t something that’s right for our family at this time. If we do try ABA in the future, it will be highly regulated and used for specific tasks only. And if one therapist ever tries to tell my child he can’t stim, they’ll have another thing coming!
3. I’m not sad that he’s autistic.
I mentioned before in my letter to a mom who just received her child’s first autism diagnosis that it’s OK to feel however you feel, and it is. Most moms will agree with that. I embrace my son’s autism. It’s a part of what makes him special, just like one child’s giftedness makes him special and another child’s global developmental delay makes him special. Autistic people add another color to our beautiful rainbow of a world, and I would never want to see a world without it. A-Man lights up my life each and every day, so I’m not sad he’s autistic. I’m sad the world may forever treat him differently. I’m sad at the lack of education, acceptance and love for the autistic community. My son and his autism aren’t what’s wrong; society is.
4. I don’t think I’m a superhero.
There’s a common belief out there that all special needs moms are superheroes, that our kids are so incredibly lucky to have families that care for them. Honestly, I think this is a bit ridiculous. When people imply that I’m a “Super Mom” because I simply love my children with disabilities the same way I love my children without, it’s a bit insulting. It implies it’s difficult to love an autistic child, which I assure you, it is not. I’ve loved all my children since the moment they were each born. I love A-Man when he struggles with eye contact. I loved Baby M when he refused to eat solid foods. I love Mr. C when he’s throwing a tantrum. I love Miss S when she’s crying while I’m trying to write a blog post (guess what’s happening right now?). A-Man is no luckier to have me than Miss S is. Baby M is no luckier than Mr. C. I love, fight for and do everything I can for each of my kids. That makes me a mom. Some may even argue that makes me a good mom. But simply treating my special needs kids the same way I treat my kids without disabilities doesn’t make me a Super Mom.
5. I don’t think you or that cheerleader or that celebrity are superheroes.
There are a lot of news stories about people with special needs that drive me absolutely insane. “Cheerleader Takes Autistic Boy to Prom” should not be news. “Cashier is Nice to Girl With Down Syndrome” should not be news. “Girl in Wheelchair Made Homecoming Queen” should not be news. Don’t get me wrong, these stories can be heartwarming, and I read and share plenty of them for that mama who needs a pick-me-up on a rough day, but let’s take a step back and ask why it’s news. If you took the disability out of those headlines, would it still be news? Absolutely not because it isn’t shocking when someone goes to prom, becomes homecoming queen or is nice. It is apparently, however, shocking when people do these completely normal things for people with disabilities. Someone inviting an autistic child to a birthday party shouldn’t be newsworthy; it should be commonplace human decency. I don’t think someone is a hero for simply treating autistic and disabled people like he or she would treat every other person in the world. It doesn’t make that person special; it makes him or her a decent human being.
6. I don’t want your “special needs prom.”
This goes along with my last point, but I really, really do not want my children singled out for events like this. There is a “special needs prom” being held in my area next month, and I really don’t understand. People are trying so hard to “give special needs kids a night to feel beautiful and shine.” Why can’t they do this at their high school prom, like everyone else? Maybe, rather than making a cutesy prom just for disabled kids (which will likely make the parents/volunteers feel like they’re doing something good rather than actually doing the kids much good) we could simply make their actual prom more inclusive? I’ll admit, sometimes having the option of an event designed for autistic kids is helpful. A movie theater in my area puts on sensory-friendly shows which helps kids who can’t tolerate the typical loud noises at a theater. It’s simply an option if that showing will fit their needs better. The prom just keeps kids separated. There’s still loud music and bright lights, so it isn’t making it more accessible to autistic kids (or kids with other sensory issues), so I don’t see any point other than to say they did something nice for the special needs community.
My intention with this is truly not to offend anyone, I’m simply sharing my thoughts. I’m certainly not popular with typical autism mamas, but I’d much rather offend them than my own autistic son. My advice? When in doubt, ask someone who actually has your child’s disability. Don’t blindly trust the experts. One thing an autistic person told me that put it all into perspective is this: “Those experts screaming for person-first language are the same people who used ‘mental retardation’ as a diagnosis.” The disability community is constantly changing and evolving, and as parents, we’re just along for the ride.
As someone who is part of the autism community, you have probably already heard the common phrase, “If you’ve met one person with autism, you’ve met one person with autism.” It means that no two people on the spectrum (or off the spectrum!) are exactly the same. It means that another person will not always feel the same way you do about certain situations. It means that each person has a different opinion.
And yet, I am constantly hearing — whether it is in a group or a forum or in person — the word “we” to describe personal experiences with autism. I have come across so many statements:
“We as autistics do not like to be called ‘people with autism.’”
“We feel as though our autism is a part of who we are.”
“We don’t want any therapy for our autistic traits.”
“We hate that autism organization.”
While these statements may hold true for some, they do not hold true for all. And to use the word “we” implies that they do. The use of the word “we” may confuse those who are not familiar with autism, or the differences each person has.
I am tired of coming up right after you and having to correct the statement that all people on the autism spectrum feel that way. I have grown tired of trying to explain to others that I might not feel the same way. I am tired of explaining to people that I really don’t care whether I “have autism” or “am autistic.” Maybe you don’t want any therapies for the social deficits, but I really would like to be able to understand a full conversation with someone without misinterpreting what they say. And perhaps you hate that autism organization. But I don’t. I may dislike certain aspects, but I don’t hate people who are trying to help me. And while I feel that my autism is a part of who I am, that does not mean everyone else does.
I constantly use the disclaimer: I can’t speak for everyone. I can only speak for myself.
I ask you, from one person on the autism spectrum to another, to please stop speaking on my behalf. By all means, please feel free to advocate for yourself. But instead of using the word “we,” just use the word “I.”
You’ve known me for a very long time. However, you have only learned recently that I am autistic. I understand this diagnosis isn’t easy for any of you to accept or understand yourselves. But do you ever wonder how easy it is for me to accept and understand myself in a world where everyone is expecting me to be someone I’m not?
Over the past 10 years, I’ve been accepted, quirks and all. You’ve seen my socially awkward side, not really talking much or trying to avoid going to a group outing altogether. You’ve seen my ability to sit down and solve problems quickly, my ability to work and just keep going like a machine, and even do a lot of extra work (often on behalf of you) without thinking twice about it. You’ve seen my lows, you’ve seen me cry or overreact to something that appears to be trivial to you. You’ve seen my extreme highs where I’m playful and make people laugh. You’ve accepted every single one of these things over the past few years as who I am and I was allowed to be that way.
What you didn’t see, however, was how tired I used to get after just a few hours of having to socialize with you. How much effort goes in to bringing myself to stand up, walk across the room and start a conversation with someone I don’t particularly have anything in common with — a conversation that has no purpose other than to say hi — and then not be able to think of anything else to say so I just feel awkward until one of us walks away. You didn’t see how upset I got after things got awkward. You don’t feel the stomach-turning pain when I have to prolong eye contact with someone so I don’t make them feel uncomfortable or as though I’m being rude. You don’t see how I notice every single detail in everything I see, and how much my brain has to process just moving into one area.
For example, when you look out to the car park, you see parked cars and the smoking shelter, right? Here’s what I see: black tarmac, white lines, red Audi, black BMW, gold Subaru, white Fiesta (and so on), every single letter on every license plate on each car (I have rhymes in my head to memorize all of them), I see a grey curved structure with misty Perspex “windows” which has two red litter bins/ash trays on either side of it, people standing around smoking/vaping, a big green hill with benches and lots of rabbits and small infant trees with different-colored leaves all over them, and a faded gravel path leading to a big circular area at the side of the building with the company’s logo fading away on it. I like this area — it’s my favorite area because I can vape there and be alone processing everything that’s going on around me. It’s my safe place.
Should I continue? I’m not actually done — that’s just what I take in on a five-minute vape break.
I see and hear so much more than you can imagine. You must think having super-vision and super-hearing is awesome right? Think again. Do you think it’s easy taking all this in for 24 hours a day, seven days a week? It’s not something that comes and goes. My brain is processing to this level of detail all the time.
I actually started to feel very ill as a result of my head working this way, as I didn’t understand myself. So, I saw a specialist, underwent some tests, and just less than six months ago, I was diagnosed with autism.
Since my diagnosis, I haven’t changed or become someone different. I just have a reason for the way I feel and react a lot of the time, and I find comfort in knowing I’m different.
I do find it saddening, however, how everyone else appears to be trying to change me “back.”
“Right, we need to get you up and talking to people, let’s get you over this social thing.”
Here’s news for you: I won’t get over it. I have no issues socializing when I need or have to. If there is absolutely no purpose to having a conversation with someone, I won’t have it. I’m at work to work, and if I need to talk to someone about work, or if I’m genuinely interested in starting a conversation, I will do so. But I can’t make unnecessary conversation to try and cure something which can’t be cured.
“You’re taking it too personally, you’re overreacting.”
Take a walk in my shoes and come back and say the same thing to me. Go on, try it.
“Why are you so clingy to that person and not balancing your attention across everyone else?”
Maybe because I have a common interest with that person, or because they’ve asked me to help or support them for a while. Maybe I’ve known them for a long time and have history with them. I’m sorry I don’t have enough love to share across the whole world. But yes, I get attached to certain people and I can safely say there are three people outside of my immediate family who I am attached to, consider my friends and trust with my life.
“You’re not approachable. You zone out all the time.”
That’s funny, because you still approach me and I respond accordingly, help you, and give you whatever you need. I zone out when I’m concentrating — when I concentrate on something it has my full attention. Which is kinda the reason my attention to detail is so high and why any favors I do for you are completed to a high standard and in good time.
“You’re too direct.”
I’m sorry I can be monotone at times or sharp. I’m the same at home. I’ve been working for 20-odd years to try and improve that. I’m pretty sure I’m not the only one out there like this, though.
There are a lot more examples I could give, but the one question I have is why has it taken a diagnosis for you to realize you don’t like who I am or how I am, and why do you feel as though you are “helping” me by trying to change me to become how “everyone else” behaves? You’ve loved me and accepted me up to now, you didn’t want to change me before, you didn’t even notice me sitting in my corner working away quite happily and getting involved when it was required and nothing more. But now that you know I have a social disorder, all of a sudden everyone feels insulted that I tell them I don’t need their “help” to change?
When did it become so wrong to be unique? I really wish you could accept me today the same way you accepted me 12 months ago.
I can’t be cured.
I am who I am.
I don’t need help.
I actually haven’t changed.
I’m different, and not less.
The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. 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.
As a private chef, my toughest critics and biggest helpers have always been the babes of the billionaires I feed. I’ve been lucky to interact with some unique and special children; this is the story of one in particular who changed the way I see the world.
My newest coworker is 7 years old, autistic, epileptic and was born with tubular sclerosis. Usually he shows up to work around 3:30 after school, begging for a cup of Cheetos and a giant orange juice.
Today, he’s upstairs sleeping. His parents are coming in from a late flight tonight, so my culinary focus has been the best damn bowl of SpongeBob Mac and Cheese he’s ever eaten. On most days he joins me in the kitchen, flapping with excitement, over-mixing batter, cleaning up the counters, and other jobs I give him.
“Tuna smells like Christmas trees,” and “the sound that kale makes is annoying,” according to the Kitchen Assistant. He’s peeled carrots and clementines; he prefers all things orange. He made his first glass of “Super Juice” and then proudly announced his handiwork throughout the house. He watched inquisitively as pulp spattered in one direction and fresh liquid dripped into the jar.
Watching how views the world inspires me to spin my thoughts in more colorful directions. I am teaching him to cook, and he is teaching me to sense.
He describes the world in texture and color. His mother’s room is “soft,” he’s displeased (like a proper Kitchen Manager) when I wear my hair down, he strongly dislikes the sound of sizzling seared meat. He knows I have a boy his age, and he inquires daily into my son’s wellbeing.
“Is your boy’s room soft?” (No, my boy’s room looks like a Lego bomb went off.)
“Does your boy like Master Shredder?” (No, he likes Raphael because he reminds him of his Uncle Wyatt.)
“Will your boy be my best friend?” (I hope one day the two of you can meet.)
Some days he slogs home in tears. It was a “Thumbs Down” day at school, and his excitement got the best of him. The last thing he wants to do is disappoint. He wants the whole world to flap with him, to marvel at the details of the day, and when his joy overtakes him, he’s admonished. “Thumbs Up” days are great; it’s announced throughout the house, and he wraps his arms around me a time with a prideful smile. Thumbs Up or Thumbs Down, my sous chef still shows at the kitchen island, ready for service.
He paints the world in color, feeling, flapping joy, texture and crunch. He seeks my company and bridges the gaps between pity and overcoming the odds. I’ve had many coworkers in this unique career. I’ve mashed acorn squash for toddling 2-year-olds, danced in the kitchen to Hank Williams with three long-haired preschoolers; I’ve catered spa days for overprivileged and misguided teens who still gripped hold of my heart despite their ability to tear up a clean kitchen and pick apart my every creation all while staring at a cell phone; but this little guy takes the cake. He’s stirred feelings of hope and wonder in a world that wilts amongst the status quo.
His spark is contagious. Every day he shows up to work, looking for love and acceptance; and lucky for me, we’re both finding it in the kitchen.
I have a sister named Chloe who has autism. She likes to play with our elf. Could you send an elf with autism just for Chloe?
“When I first saw the letter Kasey wrote, my heart was full,” Leah Beswick, Kasey and Chloe’s mother, told The Mighty via Facebook message. “It made me so proud that Kasey knew her sister didn’t understand the ‘rules’ of the Elf on the Shelf, and took it upon herself to make sure Chloe had an Elf that would fit her special needs.”
“By sharing the letter I wanted people to see that even the smallest act of kindness can affect someone in the biggest way,” Beswick told The Mighty. “Chloe’s siblings are her biggest support. They don’t look at her as different or less than anything. To them, she is just Chloe. They challenge her, understand her and love her unconditionally.”