To the People Who Get Frustrated When I Don’t Make Eye Contact

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They say eyes are the windows to a soul. Maybe that’s why I don’t like looking people in the eyes so much. It’s like I’m letting them see everything I’m thinking, like I am letting them see what makes me me, and I don’t like that. 

Eyes are like deep, dark pools in a way. When I look at them, it’s like I am being pulled into them, down down down, ’til I cant breathe or see or think. It is as horrid as it sounds. I know some people (like my parents) get frustrated when people like my brother or I don’t want or see the need to make eye contact. I will sometimes respond to my parents when they say something to me or they ask a question, but I won’t look at them, and they get annoyed at me. 

They say not looking a person in the eyes when they are talking to you is a sign of disrespect. I say expecting, and requiring, people like me or my brother, who are uncomfortable or who literally fear looking people in the eyes, to look at them in their eyes when they are talking is ridiculous. It’s like expecting someone who is afraid of heights to go stand on the top of the Empire State Building with you. It’s just plain not going to happen.

I do get where they are coming from about it. If someone isn’t looking at the person who is talking, it is automatically assumed they are not listening. But, fun fact, I can’t not listen even if I wanted to. My brain catches onto every single word or noise that is around me and amplifies it. So just because I am not looking at the speaker doesn’t mean I am trying to be disrespectful or that I am not paying attention. Some days it is just too much for me. Sometimes I am already somewhat overwhelmed, and adding even more things, like facial cues, that I have to interpret is simply too much for me to have to try and deal with. 

So, next time you see someone who won’t or can’t look straight at you, don’t get frustrated. Sometimes people can only deal with so much at once.

Abby (right) and her brother
Abby (right) and her brother

Follow this journey on Life As An Autistic Teenager.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. 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.

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To the People Who Mocked Having a Turkey as a Therapy Animal

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I recently read an article that I felt bemoaned comfort/therapy animals as an unnecessary entitlement in society and complained of a turkey accompanying someone on a plane. It was noted that the person provided documentation from a doctor for having a turkey for comfort/emotional therapy. The article seemed condescending to me, and I believe it assumed people with therapy animals “use and abuse the system.” In my opinion, that kind of language creates an atmosphere where disabled people must constantly “prove” themselves.

Captain Tom Bunn, who is quoted in the story, is a former pilot who now helps people overcome fear of flying. He called into question both the proof/documentation that people with therapy animals provide and the type of animal that can act as therapeutic, saying:

Any therapist can sign off on any kind of animal. Science has proven that when dogs look at you with total devotion, it produces oxytocin, a hormone that shuts down the fear mechanism. The turkey, I don’t think so.”

I feel Tom Bunn is spreading doubt and animosity toward disability. I felt the article also had a level of fear-mongering that the presence of animals constitutes a threat to others, be it allergies, messes or animal attacks. The comments under the article were repugnant and hateful to me, from disdain for the disabled to threats of violence if the commenter is faced with animals on their flight. They seemed to forget or ignore the positive results such therapy animals have provided so many with disabilities, including our wounded veterans. Not to mention the rescue of the animals themselves!

I have bias to disclose: I am on the autism spectrum. As I write this, I am surrounded by myriad birds — a pigeon on my shoulder, a chicken nestled under my arm and a starling sitting atop my tablet are just a few of the birds I care for. Many were rescued/raised by my own loving hands. You could say I have saved their lives, but the reality is, they have and continue to save mine.

I’ve never connected well with people, always feeling like an fearful alien among humans. I couldn’t make eye contact or express my thoughts without fumbling and stumbling on my words. I’ve been ridiculed for this throughout my life. But when I’m around animals, I suddenly find myself. I can converse about them confidently, I have a point of focus for eye contact​, and I feel diminished anxiety in interaction. When an animal is present, it’s like a miracle! Over the years, I’ve found comfort and life lessons with many rescued animal companions, such as turkeys.

With regard to the idea that a turkey can’t act as emotional support, one event stands out in my mind. My husband, sister-in-law and I once held a yard sale. Instead of hiding from strangers, our turkey accompanied me in the yard. As he strutted and displayed for anyone who stopped, I was able to answer strangers’ questions, encourage them to pet and hug my big, friendly turkey and take pictures of people posing with him. That day was just one of many wherein that sweet turkey helped me interact and just generally cope with life. He was not the first and won’t be the last turkey to impact my life.

I could go on and on about how animals (including three very special turkeys) have helped and continue to help me in life, but I fear the detractors would still call foul/fowl on the benefits of comfort/emotional therapy animals, especially unusual ones. If you ever hear or think such things yourself, now you know of at least one person whose life has meaning thanks to “odd” comfort/emotional therapy animals.

A collage photos of a woman with her turkey therapy animals
A collage of photos of Darcey with her turkey therapy animals

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. 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.

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The Results of a New Autism Study Surprised Experts in This State

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A new study shows that the number of children with autism in Nebraska is much lower than the national average.

The results, which surprised local experts, show that doctors diagnose one in 128 children in Nebraska with autism, KETV News reported. The national average is one in 68 children, according to the Centers for Disease Control and Prevention (CDC), and in New Jersey, the state with the highest rate of autism, the rate is one in 45 children, and 1 in 28 boys.

The study was conducted by Autism Action Partnership who teamed up with researchers at the University of Nebraska-Omaha.

Dave Pantos, the Autism Action Partnership program director, thinks that there are a few reasons for the relatively low rate, including difficulties in diagnosing the disorder, under reporting of it because of a lack of insurance coverage and families with children on the spectrum leaving the state because of lack of services there, KETV News reported.

Experts expect the numbers to go up in the future, but say that understanding how many people in the state are on the spectrum and where they’re located may be an important step in helping the state to have a better understanding of autism.

Get more on the story from the video below: 

 

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What It's Like to Struggle With Short-Term Memory

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One thing to know about me is that I really struggle with short-term memory. When it comes to remembering where I’ve put something, or just everyday little things in general, I’m not very good. I’m frequently losing things. I also really struggle with recalling information. When someone asks me, “What have you done this past week?” or even “What have you done today?” I often won’t know the answer. It’s not that I have no memory of what I did the past week; I just struggle to recall the information.

The memories are there in my mind somewhere, but I‘ve got so much information in my mind that I struggle to simply recall a particular thing I’ve done in the past week. I even struggle to recall the dates and times of my upcoming talks. Sometimes people will ask me when my next speech is and I honestly don’t have a clue what the answer is. This is an extremely embarrassing moment, which I frequently have to face in my day-to-day life. In a lot of ways, I struggle to remember things others take for granted.

As is often the case with autism, I make up for this lack of a memory in other ways. There are other ways in which my memory is extremely good. I have a good memory for years. I can remember the year in which a lot of events in my past happened. I also have a great memory for people’s ages. There have been people who I haven’t seen in years, but I’ll know how old they are just because I remember how old they were when I last saw them. Sometimes this good memory can even creep people out. For example, there is an autistic singer, Scott James, who was on “The X-Factor” in 2009. I met him in person in 2014 and I told him I knew he was diagnosed at the age of 13. When I told him this, for a brief moment he seemed shocked and thought I might have been stalking him. But the truth is, I hadn’t been. I just remembered the voice-over guy on “The X-Factor” mentioning that he was diagnosed at 13 and that’s how I remembered. This just goes to show that other people don’t have a memory like mine.

I also have a fairly good memory for facts when it comes to subjects of interest. Those of us with autism will often have obsessive interests in particular subjects, and we can often remember information about these subjects extremely well.

I mentioned earlier that my short-term memory is poor, but this is made up for by my brilliant long-term memory. I can remember past events from years ago (back to when I was a child) vividly. I often see my life’s story as a filmstrip. Past days and past events rarely disappear from my mind, especially if they meant a lot to me. I’m often telling people about things from the past, and everyone is shocked at how I remember it. It’s this long-term memory of mine that has helped me to write my autobiography. Because I have such a good long-term memory, I’ve been able to remember things (even vaguely going back to when I was 3 years old) well enough to write a book. My book is called “Thinking Club: A Filmstrip of My Life as a Person With Autism.”

Now, the question is, is this difference in memory a good thing or a bad thing? Well… I think it really depends on how you look at it. Obviously to struggle with short-term memory and recall can be a really big disadvantage, and believe it or not, having a good long-term memory has its disadvantages, too. Because I have such a good long-term memory, in some ways this can make my anxiety all the worse. I can often remember things from the past extremely well, and this includes both good and bad memories. I have a lot of anxiety when it comes to making mistakes and being misunderstood. There are a lot of things in my life that have made me anxious.

Because of my long-term memory, I can remember past anxieties (even going back 10 years ago, when I was a child) like they were yesterday!

I often get flashbacks to bad experiences, which have made me feel anxious or frustrated, even if they were a long time ago. I’ve never really recovered from some past anxieties, and they still haunt me to this day. A lot of these anxieties are over minor things, too. For example, I may be recalling a time when I was patronized as a child and still feel frustrated when I think about it.

However, despite this rather big disadvantage, my long-term memory isn’t something I’d get rid of if I were given the chance. There may be disadvantages, but there are many advantages to having such a good memory. In my opinion, the advantages outnumber the disadvantages. I honestly like the fact that my memory is unique.

Now, as a person with autism, these are my personal experiences when it comes to memory. Obviously this isn’t the case for everyone with autism. However, from what I see of other people on the spectrum, it seems to be common for autistics to have a poor short-term memory but a really good long term-memory, as well as a great memory for facts (or at least a brilliant memory for facts that are of interest to the individual).

Follow this journey on Alex Lowery.

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 community@themighty.com. 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.

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11 People With Autism Explain What Stimming Feels Like

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Stimming, or self-stimulatory behaviors, are behaviors people with autism may exhibit to counteract an overwhelming sensory environment or alleviate the high levels of internal anxiety, according to Temple Grandin’s post in Autism Digest. Some examples of stimming are rocking, spinning, pacing, repeating words or flapping of arms or hands.

Autistic people aren’t the only ones who stim, although occasionally people on the spectrum stim in more obvious ways and may attract attention. Many people have a hard time grasping why someone would stim.

We asked our readers with autism how they explain what stimming is like.

This is what they had to say: 

1. “It helps my body regulate the sensory information of the world.” — Laura Ivanova Smith

Image of the world. Text sasy: It helps my body regulate the sensory information of the world. -- Laura Ivanova Smith

2. “You know how when you’re cooking something on a stove, you sometimes move the lid slightly off the pot to let the steam out? How you put pressure on a bleeding wound to get the blood flow to stop, or at least lessen? For me, stimming is that relief and release — the preventing of inward things from exploding or running out by doing things outwardly to soothe the inward.” — Paula Gomez

3. “Stimming is like turning down the radio when you think you smell something burning. It’s a way of turning off the other senses so you can make sure nothings burning.” — Lamar Hardwick told The Mighty in an email

Image of burned paper. Text says: Stimming is like turning down the radio when you think you smell something burning. It's a way of turning off the other senses so you can make sure nothings burning. -- Lamar Hardwick

4. “Sometimes when I feel overwhelmed, upset or angry, I need to let it out. I feel antsy when I’m overstimulated, so I need to move around and let out some noise. It’s the only way I know how to cope. It calms me down. A common one for me is humming loudly to myself (sometimes with my ears plugged or covered) and most commonly, I’ll bounce my leg. It’s involuntary, so I don’t always realize I’m bouncing my leg. It bothers some people, but I can’t help it.”– Sydney Brown

Image of shoes on a desk. Text says: It's involuntary, so I don't always realize I'm bouncing my leg. It bothers some people, but I can't help it. -- Sydney Brown

5. “What’s it like to stim? You tell me. Most non-autistic people impulsively tap their feet, drum their fingers or let out exasperated sighs. They’re all natural forms of self-expression. The theory behind autistic stimming is the same — we’re just the ones who get called out for expressing ourselves more visibly than you!” — Chris Bonnello from Autistic Not Weird, told The Mighty in an email.

6. “Sometimes the sensory input gets too much, and I feel like I might explode. Stimming releases the tension and makes me feel a lot calmer.” — Lucy Clapham

Image of a woman holding her head. Text says: Sometimes the sensory input gets too much, and I feel like I might explode. Stimming releases the tension and makes me feel a lot calmer. -- Lucy Clapham

7. “It’s the ability and opportunity to shut out external effects. I can tune into myself, reign in my energy and feel completely wrapped and enveloped in my own bubble of comfort and total relaxation. It helps ground me to reality, breathe, slow down and soothes my nervous system that is overtaxed. At best, I feel like there is no one else around and I am completely calm, free and one with the world.” — Laura Spoerl

Image is a woman in a field. Text says: I can tune into myself, reign in my energy and feel completely wrapped and enveloped in my own bubble of comfort and total relaxation. -- Laura Spoerl

8. “It’s a comforting thing to do. Neurotypical people probably understand and do similar things, but the difference is that autism stims feel more necessary, and trying to stop them causes unpleasantness for us. It makes me feel uncomfortable when [it] cannot be done.” — Elizabeth Alford

9. “It’s a combination of habit and releasing build-up of stress or internal energy in the body. It isn’t something you do only when you have anxiety or negative feelings, it feels good. It’s kind of necessary.” — Planet Autism

Image is of a ray of light. Text says: It's a combination of habit and releasing build-up of stress or internal energy in the body... it feels good. -- Planet Autism

10. “When I’m stressed and overstimulated, I quietly hum or groan. When I’m extremely happy, I smile a ‘Cheshire Cat’ grin, rock back and forth and voice a little. Stimming is comforting, and it lets off pressure from good and bad emotions. I don’t necessarily think ‘I need to stim,’ I just do.” — Rachel Mills

11. “Stimming is like breathing… just as natural, just as important.” — Katy Kenah

Image of an x-ray of lungs. Text says: Stimming is like breathing... just as natural, just as important. -- Katy Kenah

*Answers have been edited and shortened. 

11 People With Autism Explain What Stimming Feels Like
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5 Ways to Help a Child With Autism Have a Great Haircut Experience

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For so long growing up, I could never get my hair cut in a barbershop. Crowded places like that made me feel uneasy, the sound of scissors made me cringe and when hair fell after being cut, I’d shiver like thousands of little pins were stabbing me in the back of my neck. That’s why for several years I had hair that went to my shoulders. My parents were afraid even the attempt of a haircut would be too much for me because of my sensory overload.

Once I got to middle school, though, my parents and I needed a change. We started meeting with our friend in her house to have my hair cut and we never looked back. Being in quiet surroundings with someone I felt comfortable with did wonders. Years later I started going to a salon after building the muscle memory of dozens of successful haircuts from home.

As an advocate and public speaker on the topic of autism, I wanted to share several things I believe people with autism want you to know about cutting their hair.

1. When you give us a “game plan,” we will likely feel more comfortable.

When you are in the room with us, give us an idea of what we should expect. Will we need our hair shampooed beforehand? Will you be using more than just scissors, like a razor or trimmers? The more directions you give us, the more comfortable we might be. For younger kids, visual schedules are amazing at helping us get on track.

2. Cutting our hair may be completely different than the next person you meet. Don’t be afraid to think outside the box.

For my parents, it helped having someone cut my hair in house. For others it may be sitting on the ground with them while they play a game (see the story of a barber who went the extra mile for a boy with autism). The old saying of, “If you’ve met one individual with autism, you’ve met one individual with autism” rings true for cutting our hair, too. Playing up to our interests can go a long way.

3. Positive reinforcement and reward systems can go a long way.

Every time I got my hair cut, my family promised me something fun, like going to the movies or getting a treat. Getting our hair cut can be an overwhelming experience. Give them something to look forward to and it may help with some of the stress/overload they may be feeling.

4. Sometimes it might not be necessary to cut our hair right away!

Many kids on and off the spectrum hate to have their hair cut. Some children’s hair grows faster than others. Is their hair that messy? If a child can keep their hair longer for a little while longer, you may be able to ease them into the experience when they are older.

5. Make it fun so you can form a relationship and build that trust.

Regardless if you are a barber or cutting your own child’s hair, take some time to reflect on what your child enjoys the most. Maybe it’s a specific activity they enjoy or maybe it’s talking about a certain topic? For those who are nonverbal, maybe there’s a game they could play on an iPad if they have one.

Haircuts can be challenging for our loved ones on the spectrum, but they can be possible for some with the right preparation. Hang in there, and the next time they need a trim, make sure they know you are there for them the entire way. That may be one of the most important tips of all — to help your child have the best haircut experience ever.

Follow this journey on Kerrymagro.com.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. 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.

Lead photo source: Thinkstock Images

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