In late March, Disneyland staffer Emily Gibby took to social media to find the owner of a missing lanyard her coworker had found in the park in Anaheim, California.
The badge attached to the lanyard has a note which reads, “Hello! I am autistic, and I don’t talk much, but I would like to trade for Mickey pins!” Gibby posted a photo of the lanyard on her Facebook page, adding that she and her co-workers decorated it with even more pins and a medallion.
After thousands shared Gibby’s post, the lanyard was finally returned to its owner, a young woman named Susan. Disney also sent her a few goodies, including a Mickey Mouse doll, according to a comment her mother Deb Baldwin left on The Mighty’s original report.
Many individuals with autism have sensory issues and may grow very attached to certain objects, or parts of objects, according to The National Autistic Society.
“I have always known that people with autism have daily struggles that some of us will never realize, but recently I have learned that something as small as losing a possession could drastically change their day, week, or even their month,” Gibby wrote in a post on April 2. “Losing a small item could lead to large behavioral changes and meltdowns that can not be solved by just ‘buying a new one.’”
A superstore in Manchester, England, will now offer a “quiet hour” for customers on the autism spectrum.
Starting Saturday, May 7 at 8 a.m., Asda Living will stop escalators and turn off in-store music and TV displays for an hour, Manchester Evening News reported. Loud noises, bright lights and/or crowded areas can be overwhelming for a person on the spectrum and possibly cause them to shut or melt down. Shoppers will also receive maps of the store that use images instead of words for a more visual navigation.
Simon Lea, the store’s manager, pursued the idea after watching a young customer experience sensory overload in the middle of the store. He asked a staff member who has an autistic child for advice in finding a way to help.
“It’s all about helping people, really,” Lea told Manchester Evening News. “Six months ago I would have said ‘control your child’ even though I’ve got children. But speaking to people with autism and disabled people has helped me think about how I can make it a better place to shop.”
An Asda spokesperson told BuzzFeed News the company will be “monitoring feedback from the trial, and will share information internally to see if [it] can be rolled out to other stores.
As someone on the autism spectrum, I can have a difficult time with executive functioning and making sure I get things done. I have trouble prioritizing. Sometimes, things build up so much I don’t just get overwhelmed — I begin to mentally shut down.
When I mentally shut down, I literally can’t think about the things I need to do. Imagine a power outlet being overloaded with plugs until it blows the circuit. That’s what happens to my brain. I’m so overwhelmed I stop thinking. It’s also why when I say that I’m “shutting down,” and people respond with “try prioritizing” or “just do one thing at a time,” it isn’t really helpful. I can appreciate they’re just doing their best to help. However, I’m not able to think let alone do something. My brain has no power to it, and no matter how many plugs you pull out, it’s not going to start working again until you flip the switch.
So what helps to “flip the switch”? First, I need a break to relax and not think about anything. This helps me to gain the energy I need to face the tasks again. Once I’ve had that relaxing time, someone needs to help me. If they help me to prioritize and possibly get the first thing done, then I can start thinking on my own again. Starting off with simpler tasks also makes me feel like I’m capable of doing more. (This whole process is sort of what flips the switch back.)
Mentally shutting down is not simply being overwhelmed. It’s being overloaded to the point that I’m not able to fix the situation on my own. But that doesn’t mean that the power is out. It just means I need help to flip the switch and get going again.
It was the beginning of August, I was enjoying the summer fun — until my stomach hurt to the point I was crying, whining, upset, agitated and melting down. I was hurting, but I didn’t have all of the words to describe it to people. I just knew that it hurt and that it was somewhere in my stomach area. I knew it hurt. I knew I was frustrated. I knew I wanted to feel better. But I didn’t know what hurt or why.
I often have a hard time describing, expressing and communicating pain, even though I am verbal, this is due to my autism. Pain is such an abstract concept. We often hear the phrase, “Behavior is communication.” This phrase is so important. Please, please consider medical or health issues being a possibility when seeing an individual experience behavior that seems unusual for them, out of sorts, or increases for no apparent reason.
I am so very grateful for my parents, family, therapists and friends being there for me and helping me cope and advocating with me. Thank you to every single one of them for all they did and continue to do. Support is important, and parents and caregivers need and deserve support just like the individual does.
Please trust your gut. Continue advocating to find an answer. Help the individual to be comfortable and know that you understand they hurt and are trying to figure it out. Seeing numerous doctors and working really hard to communicate and find a way to explain the hurt to others in a way that is understandable is not an easy feat — at least it wasn’t for me. I got frustrated when answers didn’t come after each doctor’s appointment and the pain was still there.
We found out what it was not, time and time again. I became pretty experienced and good at doctor’s appointments, tests, etc. But I still didn’t have an answer.
Then we finally found an answer. I was diagnosed with interstitial cystitis (IC). My bladder was hurting; the bladder and pelvic area is very close to my stomach. IC cannot be detected in the urine, hence why urine samples and various tests did not show answers. Hence why I said, “Hurt” and pointed to my stomach area. It was assumed it was gastrointestinal at first because everything else was normal. Then at a routinely scheduled appointment, a specialist asked if we’d heard of IC. We hadn’t. That was the first time we really began to think about it being bladder pain. In the end it makes sense, with the bladder so close to the stomach area. In my concrete mind, it was my stomach, and it just hurt. But detective work discovered it was more.
Please, please, please — listen to behaviors, listen to the words of others, listen to your gut feeling. Advocate for what you think and what you think is best for the individual. Remember even on the hard days, the individual needs you. You can be one of their biggest advocates. Believe the pain is real even if you can’t see it. Be patient, be understanding, be supportive. Most importantly just be there. Be willing to think out of the box. The adventure and journey may not always be easy, but I definitely learn and make progress.
Accept that sometimes behavior is simply the best and very possibly only form of communication we may have amidst all the hurt and frustration. Accept that individuals with autism are different, not less. Be aware how much one can learn by doing, living and experiencing. I ask that you do this not just in April, but year-round.
Remember, I may have autism and I have IC, but these struggles don’t totally define me or who I am. They are just a part of me. Step back and see all the many characteristics one has to offer.
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.
Routine can make a person blind to incredible beauty. It’s something that can happen slowly, over time. You can drive the same route to work day after day, but it isn’t until you are in the passenger seat that you notice the old farmhouse hidden just behind the trees. There, stopped at the very same traffic light for which you normally have very little patience, you are able to take in the true beauty of that old property — the way it sits on the small pond, the character of the tin roof. Being a passenger can afford you the chance to truly take in the vibrance and sights that are otherwise muted by your focus on the destination instead of the journey.
Raising young children with your spouse can have a similar effect. It’s not that you forget that he is wonderful. You’re married to him, after all, and part of marriage is choosing that person again, day after day. But the days become months, and then years. Your children grow, and you settle into a routine. Though it is far more rewarding than your morning commute, it is a routine nonetheless. Together, you master the basics of the parenting thing. Without even realizing it, each of you take on different roles. They become second nature, and you find yourself going through the motions of getting ready for the day, not without care, but more like a well-oiled machine. It just flows.
For David and I, this was Piper’s autism diagnosis. Piper is our 3-year-old firecracker. Born in July and the youngest of our three children, she entered the world full of spunk and joy. Somewhere between the ages of 2 and 3, her bright, contagious laughter dimmed. The words and giggles stopped coming, and tantrums and isolation took their place. Great concern led us to her pediatrician this past August, and that day set off a chain of events that threw our routine out the window.
For a while, it was terrifying. I felt that while the rest of the world carried on, time for us had come to a screeching halt. I was scared for Piper, and what her future might hold. I was worried about Kaydence and Cameron. I was worried about how this would affect David, and how he might internalize his feelings in such a situation. I was even more worried about the impact our new reality would have on our marriage.
There were some dark days, for sure. Watching your child struggle will inevitably cause a strain on any relationship. Sheer exhaustion broke us down at times and exposed our children to a more stressful environment than we’d have liked. Then, things started to come around. With an incredible support system and remarkable therapists and teachers, Piper started communicating. It was a thing of great beauty to see her light shine back through as the frustration left her body and mind. We certainly put in some hard labor, but the well-oiled machine got a much-needed upgrade to meet the new demands of our routine. With a few hiccups here and there, we worked together and caught onto this parenting thing again.
What happened next was nothing short of incredible. I deliberately took a step back and became the “passenger” again. I forced myself to actually observe our new routine instead of focusing on where we needed to be next. In doing so, I was given one of the greatest gifts in a decade of marriage; I am now able to see my husband in an entirely different light.
I see a man who has committed every fiber of his being to keeping our family together. It suddenly occurred to me that my heart wasn’t the only one that ached over the past few months. His did, too. Despite that, he has carried on with the calm, steady manner that I always recognized, but never realized was so vital to our relationship. On Piper’s toughest days, I still tend to break down. It is David who reassures me, allows me a reprieve, and steps up to the challenge without fail. It has always been David who gets the children off to school each morning, yet until I sat in that passenger seat and observed his routine, I never considered that he’s used this time all along to learn each of the children inside and out. I see now that this has provided Kaydence and Cameron with the consistency and nurturing they’ve needed.
While I’ve never known David to be anything but a loving father, I now see how learning to be a father to a child with a special need has made him stronger. I’ve thanked so many people along this journey for their support, but the greatest of thanks is truly owed to my husband, a man who never for a second let us lose our way.
The Mighty wants to hear more about relationships and special needs parenting. Can you share a moment on your special needs journey that strengthened your relationship? 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.
“We really want to involve as many families as possible where the child has been diagnosed with autism,” Raphael Bernier, a UW associate professor of psychiatry and behavioral sciences, told the Times. “We want to get every child involved.”
SPARK stands for Simons Foundation Powering Autism Research for Knowledge. Its mission, according to its website, is to “speed up research and advance our understanding of autism to help improve lives.” Information from the study will help identify genetic and non-genetic factors that contribute to autism spectrum disorder. According to the CDC, an estimated 1 in 68 children are on the autism spectrum.
If they consent, participants in the study share a DNA sample — a saliva collection kit is sent to their home and then mailed to a lab for analysis. Samples can be provided by spitting in a tube or swabbing the cheeks or gums. Because this may be painful or uncomfortable for someone with autism, SPARK released a video to help demonstrate.
“While considerable advances have occurred in autism research, there is still much we don’t know,” SPARK’s website reads. “For example, recent research has shown that likely hundreds of genes play a role in autism, but not a lot is known about which environmental factors contribute to the development of the condition.”
If you are interested in participating or would like more information, head here.