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Autism is still misunderstood. 8 parents share what you should know about it.

'When my child flips out, he's not giving me a hard time — he's having a hard time.'

Autism is still misunderstood. 8 parents share what you should know about it.

Although 1 in 68 children in America have been identified with autism spectrum disorder, many people still don't understand it.

Quick, what's the first thing you think of when you hear the word "autism"? It only happens to white families? It's only an issue for boys? Kids with ASD have no emotions?

The misconceptions are everywhere. Even in 2016, some people are like...


GIF from "Modern Family."

It's one thing to read books or studies on ASD to correct those assumptions, but it's another to hear it from the people who raise children with ASD. To that end, we reached out to a few of them.

Eight parents shared the one thing they wish people knew about raising a child with ASD.

1. I don't want my child to be labeled.

It may not seem like a big deal to some people, but Sonya wants to be clear about how her child should be addressed. He's not an autistic child — he's a child with autism or ASD. Making that subtle change makes a big difference.

Photo from Sonya, used with permission.

"We don't say things like, 'This is my asthmatic sister' or 'This is my cancerous uncle,'" Sonya told Upworthy. "Changing the language lessens the stigma and allows others to see they are a person before a diagnosis."

2. My son is highly intelligent.

Natasha wants to quiet the noise she hears about the lack of intelligence of children with ASD.

Photo from Natasha, used with permission.

"Those with ASD, like my son, are highly intelligent but learn differently," Natasha told Upworthy. "They are both mentally and emotionally intelligent, but one may need to look and listen differently to grasp their greatness."

3. My child is happy.

Maya notices how happy her son is, along with other kids with ASD. She just wants people to look past what's on the surface to see it.


Photo from Maya, used with permission.

"It's beautiful to see how rich their world can be even when they seem to stare in an empty space," Maya told Upworthy. "They enjoy such happiness."

4. I want more schools to truly understand what it's like to work with children with ASD.

Being a teacher is a very difficult, and Katherine understands that. She just wishes more schools would be more proactive when working with children with ASD. That includes doing more to fight bullying and understand meltdowns.

Photo from Katherine, used with permission.

"Teachers who feel overwhelmed by students with ASD need to speak out and get the help they need in their classrooms," Katherine told Upworthy. "These children are precious, and I want my grandson and others like him to be happy and understood."

5. I want people to know that being quiet doesn't mean being unaware.

Tamara's son may not be extremely talkative, but that doesn't mean he doesn't know what's going on around him. That's the case with many kids with ASD.

Photo from Tamara, used with permission.

"Nonverbal does not mean that they can't communicate in their own way or that they aren't aware of how you treat them," Tamara told Upworthy.

6. I want people to know that my child is talented.

Jody knows children with ASD can do a lot of amazing things. She wants others to know, too.

Photo from Jody, used with permission.

"Our sweet boy may not be able to speak or dress himself, but he is as gentle and innocent as an angel and can play piano by ear," Jody told Upworthy.

7. I want people to know that safety is a big issue for children with ASD.

Travis, a dad to a son with ASD, believes that keeping him safe is a challenge that many simply don't understand. He recalls times when his son left the house and failed to respond to his own name, and that is beyond scary.


Wandering is a major concern for parents raising kids with ASD. Photo from iStock.

"I wish people would realize that I can't just let him run off and play," Travis told Upworthy. "Some kids with ASD need constant supervision for their own safety as well as the safety of others."

8. I am not sad.

A lot of people want to offer sympathy to Jo Ellen, but she's not interested in it. As a matter of fact, she's quite happy and so is her daughter.

Photo from Jo Ellen, used with permission.

"I want people to ask me about what makes her excited because I would love to tell them about her fascination with elephants instead," Jo Ellen told Upworthy.

April is Autism Awareness Month, so kudos to these parents for doing their part to raise awareness of an often misunderstood condition.

This article originally appeared on August 27, 2015

Oh, society! We have such a complicated relationship with relationships.

It starts early, with the movies we are plopped in front of as toddlers.

Keep Reading Show less

This article originally appeared on August 27, 2015

Oh, society! We have such a complicated relationship with relationships.

It starts early, with the movies we are plopped in front of as toddlers.

Keep Reading Show less
True

Each year, an estimated 1.8 million people in the United States are affected by cancer — most commonly cancers of the breast, lung, prostate, and blood cancers such as leukemia. While not everyone overcomes the disease, thanks to science, more people are surviving — and for longer — than ever before in history.

We asked three people whose lives have been impacted by cancer to share their stories – how their lives were changed by the disease, and how they're using that experience to change the future of cancer treatments with the hope that ultimately, in the fight against cancer, science will win. Here's what they had to say.

Celine Ryan, 55, engineer database programmer and mother of five from Detroit, MI

Photo courtesy of Celine Ryan

In September 2013, Celine Ryan woke up from a colonoscopy to some traumatic news. Her gastroenterologist showed her a picture of the cancerous mass they found during the procedure.

Ryan and her husband, Patrick, had scheduled a colonoscopy after discovering some unusual bleeding, so the suspicion she could have cancer was already there. Neither of them, however, were quite prepared for the results to be positive -- or for the treatment to begin so soon. Just two days after learning the news, Ryan had surgery to remove the tumor, part of her bladder, and 17 cancerous lymph nodes. Chemotherapy and radiation soon followed.

Ryan's treatment was rigorous – but in December 2014, she got the devastating news that the cancer, once confined to her colon, had spread to her lungs. Her prognosis, they said, was likely terminal.

But rather than give up hope, Ryan sought support from online research, fellow cancer patients and survivors, and her medical team. When she brought up immunotherapy to her oncologist, he quickly agreed it was the best course of action. Ryan's cancer, like a majority of colon and pancreatic cancers, had been caused by a defect on the gene KRAS, which can result in a very aggressive cancer that is virtually "undruggable." According to the medical literature, the relatively smooth protein structure of the KRAS gene meant that designing inhibitors to bind to surface grooves and treat the cancer has been historically difficult. Through her support systems, Ryan discovered an experimental immunotherapy trial at the National Institutes of Health (NIH) in Bethesda, MD., and called them immediately to see if she was eligible. After months of trying to determine whether she was a suitable candidate for the experimental treatment, Ryan was finally accepted.

The treatment, known as tumor-infiltrating lymphocyte therapy, or TIL, is a testament to how far modern science has evolved. With this therapy, doctors remove a tumor and harvest special immune cells that are found naturally in the tumor. Doctors then grow the cells in a lab over the next several weeks with a protein that promotes rapid TIL growth – and once the cells number into the billions, they are infused back into the patient's body to fight the cancer. On April 1, 2015, Ryan had her tumor removed at the NIH. Two months later, she went inpatient for four weeks to have the team "wash out" her immune system with chemotherapy and infuse the cells – all 148 billion of them – back into her body.

Six weeks after the infusion, Ryan and Patrick went back for a follow-up appointment – and the news they got was stunning: Not only had no new tumors developed, but the six existing tumors in her lungs had shrunk significantly. Less than a year after her cell infusion, in April 2016, the doctors told Ryan news that would have been impossible just a decade earlier: Thanks to the cell infusion, Ryan was now considered NED – no evaluable disease. Her body was cancer-free.

Ryan is still NED today and continuing annual follow-up appointments at the NIH, experiencing things she never dreamed she'd be able to live to see, such as her children's high school and college graduations. She's also donating her blood and cells to the NIH to help them research other potential cancer treatments. "It was an honor to do so," Ryan said of her experience. "I'm just thrilled, and I hope my experience can help a lot more people."

Patrice Lee, PhD, VP of Pharmacology, Toxicology and Exploratory Development at Pfizer

Photo courtesy of Patrice Lee

Patrice Lee got into scientific research in an unconventional way – through the late ocean explorer Jacques Cousteau.

Lee never met Cousteau but her dreams of working with him one day led her to pursue a career in science. Initially, Lee completed an undergraduate degree in marine biology; eventually, her interests changed and she decided to get a dual doctoral degree in physiology and toxicology at Duke University. She now works at Pfizer's R&D site in Boulder, CO (formerly Array BioPharma), leading a group of scientists who determine the safety and efficacy of new oncology drugs.

"Scientists focused on drug discovery and development in the pharmaceutical industry are deeply committed to inventing new therapies to meet unmet needs," Lee says, describing her field of work. "We're driven to achieve new medicines and vaccines as quickly as possible without sacrificing safety."

Among the drugs Lee has helped develop during her career, including cancer therapies, she says around a dozen are currently in development, while nine have received FDA approval — an incredible accomplishment as many scientists spend their careers without seeing their drug make it to market. Lee's team is particularly interested in therapies for brain metastases — something that Lee says is a largely unmet need in cancer research, and something her team is working on from a variety of angles. "Now that we've had rapid success with mRNA vaccine technology, we hope to explore what the future holds when applying this technology to cancers," Lee says.

But while evaluating potential cancer therapies is a professional passion of Lee's, it's also a mission that's deeply personal. "I'm also a breast cancer survivor," she says. "So I've been on the other side of things and have participated in a clinical trial."

However, seeing how melanoma therapies that she helped develop have affected other real-life cancer patients, she says, has been a highlight of her career. "We had one therapy that was approved for patients with BRAF-mutant metastatic melanoma," Lee recalls. "Our team in Boulder was graced by a visit from a patient that had benefited from these drugs that we developed. It was a very special moment for the entire team."

None of these therapies would be available, Lee says without rigorous science behind it: "Facts come from good science. Facts will drive the development of new drugs, and that's what will help patients."

Chiuying "Cynthia" Kuk (they/them) MS, 34, third-year medical student at Michigan State University College of Human Medicine

Photo courtesy of Cynthia Kuk

Cynthia Kuk was just 10 years old when they had a conversation that would change their life forever.

"My mother, who worked as a translator for the government at the time, had been diagnosed with breast cancer, and after her chemotherapy treatments she would get really sick," Kuk, who uses they/them pronouns, recalls. "When I asked my dad why mom was puking so much, he said it was because of the medicine she was taking that would help her get better."

Kuk's response was immediate: "That's so stupid! Why would a medicine make you feel worse instead of better? When I'm older, I want to create medicine that won't make people sick like that."

Nine years later, Kuk traveled from their native Hong Kong to the United States to do exactly that. Kuk enrolled in a small, liberal arts college for their Bachelor's degree, and then four years later started a PhD program in cancer research. Although Kuk's mother was in remission from her cancer at the time, Kuk's goal was the same as it had been as a 10-year-old watching her suffer through chemotherapy: to design a better cancer treatment, and change the landscape of cancer research forever.

Since then, Kuk's mission has changed slightly.

"My mom's cancer relapsed in 2008, and she ended up passing away about five years after that," Kuk says. "After my mom died, I started having this sense of urgency. Cancer research is such that you work for twenty years, and at the end of it you might have a fancy medication that could help people, but I wanted to help people now." With their mother still at the forefront of their mind, Kuk decided to quit their PhD program and enter medical school.

Now, Kuk plans to pursue a career in emergency medicine – not only because they are drawn to the excitement of the emergency room, but because the ER is a place where the most marginalized people tend to seek care.

"I have a special interest in the LGBTQ+ population, as I identify as queer and nonbinary," says Kuk. "A lot of people in this community and other marginalized communities access care through the ER and also tend to avoid medical care since there is a history of mistreatment and judgement from healthcare workers. How you carry yourself as a doctor, your compassion, that can make a huge difference in someone's care."

In addition to making a difference in the lives of LGBTQ+ patients, Kuk wants to make a difference in the lives of patients with cancer as well, like their mother had.

"We've diagnosed patients in the Emergency Department with cancer before," Kuk says. "I can't make cancer good news but how you deliver bad news and the compassion you show could make a world of difference to that patient and their family."

During their training, Kuk advocates for patients by delivering compassionate and inclusive care, whether they happen to have cancer or not. In addition to emphasizing their patient's pronouns and chosen names, they ask for inclusive social and sexual histories as well as using gender neutral language. In doing this, they hope to make medicine as a whole more accessible for people who have been historically pushed aside.

"I'm just one person, and I can't force everyone to respect you, if you're marginalized," Kuk says. "But I do want to push for a culture where people appreciate others who are different from them."