I’m an Adult on the Spectrum, so Please Stop Treating Me Like a Child

2k
2k
3

So many times I have been treated differently because people have heard the word autism associated with me. Sometimes people even treat me like they would a child — speaking in a soft, slow voice, or poking me over and over again or behaving in some other sort of way they never would with any other adult. Or they seem baffled by the fact that I don’t act like their child. The reason is because, as with most people, I am different than I was as a child and different from a child in general. I am a 27-year-old adult who tries to act like one.

I can understand why people associate children with autism. Most organizations, information, infographics and so many other things associated with autism are geared toward parents of children with autism. This makes it seem like they’re the dominant group or how it must be for everyone on the spectrum. But we are hearing only one part of the story.

Now there are groups that deal with adults, but they can be less prominently known. As of this writing, the Autistic Self-Advocacy Network has about 18,000 likes on its Facebook page, while the Thinking Person’s Guide to Autism has about 151,000 likes on Facebook. These numbers are dwarfed by autism parents’ networks like the largest autism organization, Autism Speaks, which reaches 1.5 million people on Facebook, or another parent-based site, Autism Awareness, which reaches 2.1 million people.

When I checked the Autism Awareness Facebook page, it showed a video of a raccoon lying on a dog, a story of a mom who was heartbroken because no one showed up to her son’s birthday party, an article about a sensory-sensitive theater, selling of jewelry and other items with autism themes, a story about a child prodigy who is proud to be on the spectrum and a group of young men with Asperger’s running around in superhero outfits doing comedy. If this were a person’s only interaction with people with autism, I can see how they get the autistic-person-as-child worldview. But that’s because they’re only seeing part of the picture.

I personally, and a lot of people I know, are high-functioning and live rather normal lives. A lot of people will not disclose being on the spectrum because they don’t want to be associated with some of the things from the paragraph above, along with the rest of the negative stigma about autism. I myself still experience moments when people treat me like a child, talk to me like a child and are surprised by the way I act. I will admit I wasn’t always the way I am. Some of these people have known me for some time or have seen me mature, but their view of me has not. I am very different as I am now, an adult, than I was as a child, a teen or a younger adult. I will be different when I am a middle-aged adult and a senior citizen. This is true for everyone — on the spectrum or not.

I’ll be honest — I grew up delayed. I didn’t walk, talk, read, ride a bike, drive or do most things in life at the same time many of my peers did. But just because I was delayed, it didn’t mean I couldn’t learn or catch up. For example, when I learned to walk, I started to run right away. When I talked, I talked in full sentences from the start. This is true for everyone — just because we can’t do something at first or are bad at it, doesn’t mean we can’t get better.

I did have more trouble dealing with sensory overload and anxiety, but I learned to deal with them the best I could. When you’re a child, you’re learning so many different things and maturing so quickly, it’s sometimes overwhelming to learn about some other things, too, but as you grow, you start to learn how to work with what you have.

Some of what people might have thought was my autism back then was simply me being a child. Children can be a bit self-centered or have trouble with impulse control. This can be harder to manage when you have less control of the world around you, but again, you grow and mature and you learn strategies. When you are a younger person with autism, you might have communication challenges — either with actually saying the words or finding the right words to say. But this can be true for any child. Who hasn’t watched “Kids Say the Darndest Things?” That is basically the whole premise of the show. But as you grow older, you can learn how to express what you mean in more efficient and effective ways.

Jason Harris the mighty.2-003

Finally, I think there is also a misguided assumption that kids with autism and even adults with autism are OK with not having friends or only want friends who are on the spectrum. Sometimes it’s hard to make friends as a child on the spectrum and as an adult. Some of this is because those of us on the spectrum are trying to learn how to read other people, which can be difficult, but can also get easier. Some of it can be because you don’t have the confidence yet.

It’s an understandable thing for people who just want friends on the spectrum. They tell me it is safer; they can feel more comfortable around them and don’t have to explain why they do certain things. I can completely understand this, as I have a bit of a hard time making friends due to a fear that I stink at social skills or that people will make fun of me for some weird things I might do. I have to gain the confidence that I can relate.

You might ask, “Why not just hang out with people other than people on the spectrum?” And the answer is, I do, if they’re someone I can talk to or relate to, but that isn’t always the case. I want to be friends with people who like big ideas but can also talk about anything. This is what I want from any person — on the spectrum, neurotypical or whatever else in between.

We should all have the friends we want, not just the friends people think we deserve or believe are the only people who will be friends with us. We deserve to be treated as we are — adults who just happen to be on the spectrum.

A version of this post originally appeared on Jason’s Connection.

2k
2k
3

RELATED VIDEOS

JOIN THE CONVERSATION

12 Weird Ways My Life Changed Because of My Chronic Illnesses

3k
3k
7

I believe chronic illnesses can change your life in some weird ways, but sometimes they are the best ways ever. For instance, I wouldn’t have met some of the amazing people I’ve become such close friends with. My illnesses also make ER trips and words like “eosinophilic” just a part of my life, along with “seizures,” “comas” and “spoonies.” My life has changed in some of the weirdest ways, but it’s a good thing. Here’s a list of some of the weird ways my life changed because of my chronic illnesses…

1. I almost always have selfies from a hospital or ER on my phone at any given moment.

My favorite selfies are when I’m drugged from the medicine I take for my chronic illnesses. Someone should learn to take my phone away, but I think it makes for a good text to my best friend the next day.

2. I’ve lost people close to me.

My experience is that when you become ill, people stay for a little while, but when you can’t hang out and you’re too weak to text them back, they might slowly fade away. That even includes family and close friends. And that’s when…

3. I found the world of spoonies.

“Spoonies” are people who are chronically ill and people who deal with being ill. When you find this world online, it can be like magic. You find people like you, people who enjoy the weird things you do. They take photos of their feeding tubes and their ports like it’s nothing, and for a moment when you have to deal with this world, you could feel slightly normal.

4. I set goals for showering, taking meds, eating and anything else.

My goals might be small to some people, but when you have a chronic illness and take a shower, it can be a big freakin’ deal. It’s hard to shower for me; it’s hard to move, let alone do things that are physically hard.

5. Watching Netflix/Hulu/cable has become a sport.

I can tell you all the good shows out, and I can totally win any trivia game on TV shows and movies. I’m really good at Netflixing. It’s a passion at 2 a.m.

6. I’ve learned people don’t always care when you don’t get better fast.

For some reason, some people don’t understand the chronic part of chronic illnesses. They forget that chronic illnesses don’t get better in three months and with rest, and they forget me. But slowly I’ve found the people who stay and stick with me, and those people are my heroes.

7. The guilt of having a chronic/rare/incurable disease is sometimes worse than the pain from the disease.

I have a few moments when I felt horrid because of the guilt. For example, I couldn’t wash dishes and I felt guilty because of it. I want to be there for my family and friends, and I don’t want to make people do things for me. All the money they spend, all the sleepless nights — I notice them and am really thankful for them.

8. People stare at you for weird reasons all the time.

People with chronic illnesses often get stares, whether it’s because you’re in a wheelchair or using a walker, or you have a port connected to a backpack or a feeding tube sticking out of your stomach at the beach or swimming pool… Or for no reason at all. We learn to deal with the stares and we have to learn to laugh about them. But please don’t stare.

9. I’ve learned to enjoy little moments.

I love being able to wash dishes or go to Target on good days, and I love Facetime-ing with my friends who also have chronic illnesses. You might learn to appreciate the little things, too, like the t-shirts your sister got you and the spoon necklace. The smoothie my sister brought me to bed this morning meant more to me than words can say. It’s all the little things.

10. Doctors might call you more than most friends.

I got a call from my allergist the other day, and even this morning they called me. The nurse totally knew who I was. And this happens a lot.

11. I sleep more hours than I’m awake some weeks and vice versa.

A while back, I slept for a bunch of days in a row. Or wait… I was in a coma (coma joke). But sometimes I can’t sleep. Like this week, my body doesn’t want to sleep unless it’s 2 in the afternoon. But last week I was nonstop sleeping.

12. I accepted that my life from this point on is a chronically amazing one.

I might be chronically ill, but I’m also chronically amazing. I will be sick; it’s just a matter of how sick I will be. But I can find the happiness in each day. I will be OK because I will fight until the day my body has no fight left in it. And even then, I’ll fight like hell. And I know I have some amazingly fantastically people who will fight for me and with me and alongside me.

I’m accepting that I’m sick, I’m ill… That changes me — but in the best way possible. It has showed me so much I never knew. It has shown me how to breathe deeply and enjoy the air. It’s been so amazingly wonderful, and my life is good. I like my life. I like the world I have.

I wouldn’t change my spoonie world for a lot. I was born and my journey is unfolding exactly as it should be. I am strong enough to live in my body.

Follow this journey on Shayweasel.

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.

3k
3k
7
JOIN THE CONVERSATION

When My Son’s Doctor Said a Sentence I Didn’t Know I Needed to Hear

543
543
0

Last week I sat in the waiting room of the hospital with two antsy children, trying to keep one from dashing into the elevator and the other from twirling into nearby people. Our son sees a specialist whose office is in the local hospital. It’s not my favorite place, but he’s one of the best doctors in the area.

I’m beginning to feel the sweat beads on my face when the nurse finally calls our name… several times. I’m trying to gather our things and the children and finally cry out, “We’re coming as fast as we can!”

We make our way down the hall to the room where they take vitals. I kneel on the floor to help my son with his shoes and then help him step on the scale. “Hands down, buddy!” “Both feet on the bottom.” “Don’t touch the wall!” “Nope – both feet on the scale, buddy!” “Like this! Do what Mommy does!” Until we finally get a fairly accurate weight.

Over to the wall we go where I drop to my knees to put his feet against it. “No squatting.” “Honey look at me – look straight at my face.” “No jumping please!” “Just freeze – just like that!” And we finally get his height. Temperature is next and it takes a few tries – then pulse and blood pressure. “It’s just a hug for your arm!” 

We move down a few doors to wait for the doctor. I’m damp with sweat now and feeling frazzled. I spend the next few minutes keeping little hands out of the trash, pulling him out from under the cabinet, placing tools out of reach, and finally quiet him in the chair with my phone. There’s the light tap at the door. This doctor understands and never makes us wait long. Twenty minutes later we’re gathering our things to leave and the doctor stops to shake my hand on the way out of the exam room. Distracted I thank him for his time and care for my son. Then he stops mid-stride and turns to me.

“Thank you for what you’re doing.” 

He looks right at me as he says it. “You’re doing a great job with your children.”

I sputter out a thank you as he turns and disappears down the hall.

The doctors we see know how much I love my children. They see it when my eyes fill with tears as I ask for answers and help and describe the struggles they face. They hear it when my voice chokes and I share my fears, concerns and hopes. But he’s the first one to stop and thank me and tell me I’m doing it right.

They say it takes a village to raise a child. I used to bristle at that phrase and think to myself, “I don’t want anyone raising our children but me and my husband. We didn’t bring them home so someone else could raise them!” But I didn’t understand what the phrase meant. I can get so consumed in our daily lives and in the many needs and trials and triumphs we experience that I get tunnel vision. I keep my nose to the ground and focus on our family. But when I take the time to raise my head and look around I see that we have a small village helping us raise our children.

I see the grandparents who take our children for a weekend so my husband and I can have some respite.

I see the friend who comes to babysit on occasion so we can go to an event or have a date night.

I see the teachers who text us in the morning to let us know our son isn’t crying anymore and include pictures of him playing.

I see the friend who comes to our house to cut our son’s hair just so he’ll be comfortable with the experience.

I see the therapists who work with my son weekly, partnering with me to help him grow.

I see the friends who listen and cry and pray with me.

I see the family members who call to check in and celebrate milestones with us.

I see the doctors who answer our questions, try new approaches, take my evening phone calls and take the time to get to know our family well.

I see the loved ones who leave us a meal, send a gift card to the coffee shop or mail an encouraging note.

I see the Sunday school teachers who adapt their normal routine to include our son.

I see the strangers who have stopped in the store to pat me on the shoulder mid-meltdown, offer a smile or simply tell me, “It’s OK.

When I stop to look around and see the village, I’m overcome with gratitude. The village feeds us – our souls and our stomachs. The village teaches us and guides us at times. The village encourages us to keep moving forward one day, one step at a time. It takes a village to raise a child – a beautiful village of people to love our family along the way – a community of people reaching out to offer support, encouragement and wisdom. And I love our little village.

01-1024x682(pp_w665_h442)

Follow this journey on LaurenCasper.com.

543
543
0
TOPICS
JOIN THE CONVERSATION

6-Year-Old With Rare Genetic Condition Nails Zumba Routine

2k
2k
0

Audrey Nethery has some serious moves.

The 6-year-old was invited to perform at a Zumba concert in Orlando earlier this month for the International Zumba Conference, according to the description of the YouTube video below. She danced in the sold-out show with some of her local instructors and some of the best Zumba teachers in the country.

Her adorable performance was posted on Youtube on August 18 and it’s now been viewed over 4 million times, and shared more than 27,000 times on Facebook.

Audrey does Zumba for the exercise but also in part to boost her confidence. She has a condition called Diamond Blackfan Anemia, which is a rare inherited syndrome of the bone marrow.

Here is Audrey in a beautiful tutu made by a follower of her page!!!

Posted by Audrey's DBA Photo Booth on Tuesday, August 4, 2015

 

We like it because she has fun and gets some good exercise,” Audrey’s father, Scott Nethery, told Yahoo Parenting. “We also feel that it has helped boost her confidence a bit. Audrey is smaller then other kids her age due to having Diamond Blackfan Anemia, and that bothers her sometimes. However, her size doesn’t matter when she is dancing and she knows she is pretty good at it!”

Watch Audrey’s performance at the International Zumba Conference below:

Check out Audrey’s Facebook page, where she raises awareness about her condition, for more information. 

 

2k
2k
0
JOIN THE CONVERSATION

Why I Cry When I Think About the Girl Who Yelled ‘You’re Bald’ at My Child

385
385
5

A few weeks ago, I ventured out to a local playground with my three daughters. Ash and Wren are identical twins, and Phoenix has Down syndrome and alopecia areata. Because of the unique makeup of our family, we get noticed, a lot.

We generally have very positive experiences at playgrounds since other children will invite Phoenix to play alongside them. This time was no different. However, just before we left, an older boy who looked to be 8 or 9 looked at Phoenix and said to me, “She’s creepy!”

Because I’m also a teacher, it’s very natural for me to correct other children’s behavior. So even though I wanted to cry at the cruelty she was just exposed to, I replied somewhat angrily, “That’s not nice! You don’t call people creepy because they are different. She’s beautiful. It’s mean to say that.” Then I took Phoenix home.

I stewed about the incident for a while then decided to write a post for my local moms group — not to attack the kid, he was a child after all — but to educate the moms and to encourage them to initiate conversations with their children about how everyone is different and that different is beautiful. I also provided some information about alopecia areata, an autoimmune condition that causes your hair to fall out. The post was very well received. We had hundreds of comments and positive words of encouragement.

Weeks later, I had brought Phoenix with me to a local store. A little girl passed us while walking with her mother. The girl pointed to Phoenix and yelled, “You’re bald! You’re bald!”

The mother turned right to her daughter and replied, “What did you say? That girl has alopecia. You say sorry right now.” And then she marched her daughter right up to us to apologize, which we graciously accepted.

When I think about this incident, I still want to cry because it so clearly illustrates to me that educating others about disabilities and differences works.

It made a difference in how that mom parented her daughter and initiated conversations on a wider scale in our community. It provided understanding about differences. And it left me proud to be a member of a community that is obviously open to learning.

Johanna Hirons the mighty.2-001

Follow this journey on Celebrating Phoenix.

385
385
5
TOPICS
JOIN THE CONVERSATION

6 Requests for the Mainstream Teacher of My Child With Autism

4k
4k
3

Dear General Education Teacher,

I just heard you’ll be my daughter’s mainstream teacher this year. Congratulations! You’re so lucky. I’m not sure how many students with special needs you’ll have in your class, but each and every one will always add something incredible to the class dynamic. Everyone will grow, learn and remember this year a little bit more than others. That goes for you, too! Here are six things I ask of you:

1. Treat her like every other student.

She’s just another kid in the class. Make sure you speak to her in the same way, with the same tone and at the same volume as you do other children. Her hearing isn’t affected by her autism, and yet, some people think they need to speak louder. It might take her longer to process all the things you’re saying, so have patience. But there’s no need to overly simplify your language. She’s a student in your classroom and on your roster. Please treat her like she belongs there.

2. Presume competence.

She’s got a lot going on in that head of hers. She is very capable and very determined when she’s encouraged and gets the message that someone believes in her. Believe in her. Provide the same opportunities to her as you do for your other students. She is competent. Raise the bar. She may not always be able to reach it, but let her know you believe she will one day.

3. Make sure she’s welcomed.

Before she joins your class, take time to explain to your other students why everyone deserves a spot in class and why everyone deserves to feel like they’re wanted and belong. Here’s a list of books you can even share with them to explain disabilities. Encourage them to reach out and try to engage my child. Too often kids like mine are sent the message that they don’t count and don’t belong. Drive home that every student belongs. Let them know your classroom is a place where everyone is treated the same, which brings me to my next point…

4. Inclusion benefits everyone.

It provides your typical kids the opportunity to meet, engage and befriend someone different from them. It fosters independence, pride and compassion. Find those compassionate kids and encourage them to sit with my child at lunch, play with her on the playground and maybe even spend time with her after school. Friendships don’t come easily to my daughter. I’ll depend on you to let me know if there are students I can reach out to for weekend playdates. Inclusion can be a real-life anti-bullying campaign.

5. Communicate honestly with me.

When we meet and discuss her progress, tell me how she’s really doing in your class. Please don’t patronize me by saying, “She’s doing great!” if the subtext is “for a child with special needs.” I rely on you to help shape her educational experience and to help me decide which environments she will thrive best in and where to place her in the future.

6. Expect to fall in love.

If you embrace being a part of my child’s team, you’ll never want out! Once my child touches your heart — and she will most definitely touch your heart — you’ll probably become an advocate for her and for other students like her. You’ll feel overwhelming joy when she understands lessons that once seemed too tough and meets milestones that once seemed too far reaching. You might just remember why you became a teacher in the first place and find a renewal of energy and spirit. Yes, just one student can make that much of a difference in the life of a teacher — and one teacher can make that much of a difference in the life of a child like mine.

Dani Gillman the mighty.1-001

A version of this post originally appeared on Birdhouse for Autism.

4k
4k
3
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.