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 [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.

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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 [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.

Lead photo source: Thinkstock Images

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Being Autistic Doesn’t Make Me an Autism Expert, but My Voice Still Matters

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I once had the following conversation with a psychologist:

“I am an autism expert. I know everything about autism. I read loads of books and I am autistic.”

“No you don’t, Lucy. You are one person with autism. You know a lot about autism, but that doesn’t make you an expert.”

Cue intense meltdown where I screamed and smashed things for over an hour.

I was 21 when that exchange took place and extremely stubborn. I was arrogant, had little to no understanding of other people’s views and if I disagreed with you, it didn’t end well! These days, six years, seven psychiatrists, five house moves, several assertiveness courses and lots of reading later, I would like to think I am less ignorant and less stubborn. I also realize that the psychologist was right. I am one person with autism.

This doesn’t make my voice irrelevant, though. Although I cannot speak for everyone with autism, I can advocate for them. Use my voice to educate people on all different types of autism. Tell people my personal experience of autism. Explain how poor the services and support available are. Tell them how I ended up going into care because no one would listen to my Mum’s concerns about my severe behavioral problems. Offer advice to service providers about how to make life better for this generation of autistic children and adults.

So no, I am not an autism expert, but I will always be an advocate.

woman giving speech using microphone
Lucy giving a speech

Follow this journey on A Lifetime of Labels.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability and/or illness. 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.

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When I Realized My Son’s Autism Didn’t Need to Change — I Did

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I’m not a fan of change. I like my comfort zone and keeping things “as is” because I feel comfortable with “as is.” I know what to expect from “as is.” So, when change comes along and rears its ugly head, “as is” goes out the blankety-blank window.

Yeah, change sucks. Sometimes. Not always.

No time is change more expected, more discussed and more debated than at the start of a new year, so I always jump on the change bandwagon…for about a week. When the calendar marks the end of one year and the beginning of the next, change is expected. Change is encouraged. We are all supposed to change for the better, thus having a better year than last. So, come January 1, I decide to change, too.

I’m going to change by eating healthier, exercising more, swapping screen time for snooze time, swear less, reduce my incessant need to please people and decrease my wine intake. Change, change, change. It’s no wonder I’m not a fan — change and I, well, we don’t jive, so I typically fail miserably.

I continue to eat Cap’n Crunch cereal for breakfast, binge-watch “Homeland” until the wee hours of the morning, skip the gym (sometimes I just totally forget I thought about going), swear like a truck driver, people-please to the point where I don’t remember what pleases me and beg my husband to stop at Total Wine while traveling. Promise. Fail. Repeat.

​Sigh.

Merriam-Webster dictionary defines changes as “to become different; to become something else.” What if this new year I decide to not become different or something else? What if I decide to keep on eating Cap’n Crunch cereal for breakfast, forget to go to the gym (time and time again) and keep on talking like a truck driver? What if staying the same isn’t so bad (with the exception of all that sugar in Cap’n Crunch cereal)? What if I’m resistant to change? What if change is scary or bad? What if something becomes different and I want it to go back to being the same? Can I change it back?

Yeah, change sucks. Sometimes. Not always.

As it turns out, no matter how much Cap’n Crunch I eat, change comes whether I like it or not. Change often comes when we don’t want it to. When we aren’t expecting it. When we want nothing more than to continue with status quo, when “as is” seems good enough. It seems no matter how hard I try to hang on to “what used to be,” it quickly becomes “what was.” Especially when it comes to my kids. As I watch them growing up, moving forward and “changing,” I dig my heals in, tie a harness around the biggest tree I can find and hold on to “same” as long as I can. Guess what? The tree falls over, the harness snaps and I fall flat on my face, landing in a big pile of change. Yeah, I know, “it’s what’s supposed to happen,” but it doesn’t mean I have to like it.

Change sucks. Sometimes. Not always.

There was a time when I longed for change. A time I begged for change. A time I prayed for change. A time when I feared the status quo and “as is” had me freaked out. I desperately wanted things to change, things to become different, even though “different” was precisley the driving force causing me to wait for change to come. And I didn’t want to wait for a new year for change to arrive.

I wanted my son Ryan’s language to change from scripting to communicating. I wanted his overloaded sensory system to change so his day-to-day life was easier for him (and yes, selfishly, for the rest of our family). I wanted his lack of desire to connect and make friends to change. I wanted my son’s insistance on routine and his fear of change to change. I wanted his diagnosis of autism to change, for him to not have a diagnosis at all which would make all those other changes I wished for no longer necessary.

But with all this change I bartered and begged for, what really needed to become “different” or to “become something else” was me.

I needed to change… my understanding, my fear, my ignorance and my awareness. My son didn’t need to change, I did. When he was scripting, he was communicating — I just needed to change how I heard him. When his sensory system was overloaded and he was in the throws of a meltdown, I had to change how I viewed the world so I could see his view in order to help him. I had to change my thinking of what a friend was and what a friend needed to be. I had to change my fear of disrupting his routine and find ways to help him cope when the routine had to change. I had to take my worry, fear and lack of understanding of autism and change how I viewed this diagnosis and realize that autism did not make my son “become something else.” He was and has always been Ryan. I just needed to change how I saw him.

And I did. This time, change did not suck. This time, change was good. This time the status quo needed to be disrupted. “As is” was no longer cutting it, and it was hurting my son. This time, I had to “become different” and “become something else.” This time, change didn’t hurt me. This time, change saved me.

It was my insistence on things being the same — the same as they were for my oldest son, the same as they were for kids in my son’s daycare class, the same as they were for my friends’ children — that caused me to want change for him. And at the time, I believed this change was best… for him. Yes, in some ways those changes may have helped Ryan communicate better and get through the ins and outs of his day better, but he didn’t need to change — I did.

Change sucks. Sometimes. Not always. But when your heart is in it, really, really in it, you can change. You can “become different,” and that difference may change your world and the world of someone you so desperately love.

Wine and Cap’n Crunch will not change though. Guilt be damned.

mom and son at dinner table
Kathy and Ryan

Follow this journey on The AWEnesty of Autism.

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.

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