by Todd Drezner, via Huffingtonpost.com
If you are the parent of an autistic child, you may be surprised to hear that you are not actually living. Yes, I’m sure it’s a shock, but you can find this and many other startling statements about autism in a recent article written by Suzanne Wright, the co-founder of Autism Speaks.
According to Wright, families with an autistic child, “… are not living. They are existing.” She conjures a world in which “we’ve for the most part lost touch with 3 million American children” who are autistic. And she claims that for families with autistic children, “Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future.”
The world that Wright presents is a fantasy. Yes, autistic people face challenges, some of them severe, but to present their lives as nothing more than unrelenting tragedy and despair is simply dishonest. And stirring up fear of and pity for autistic people doesn’t actually do anything to help them live lives that are far more nuanced than Wright would have it.
Given the disdain that Wright’s fantasy world shows toward autistic lives, you might not expect Autism Speaks to be a funder of one of the best recent support programs for autistic children. And yet, that’s exactly what happened with Keeping it Real, a website partially funded by a Family Services Community Grant from Autism Speaks. In contrast to Wright’s vision, this site shows how the lives of autistic children can be improved — with the help of autistic adults. Keeping it Real has something to teach its funder.
The site was developed in part by Lauren Hough, Kristie Koenig, and Aaron Lanou of New York University’s Steinhardt ASD Nest Support Project, which provides training and on-site support for professionals working in the ASD Nest program, New York City’s inclusion program for autistic students. Keeping it Real offers lesson plans, activities, and video clips for educators, therapists, and kids on the autism spectrum.
According to Hough, “We wanted to have strength-based modules that we could use to support our middle school students with autism. We were interested in activities and materials that would empower our students and help them find their strengths and voices.”
But to create those materials, the ASD Nest Support Project did not turn only to education professionals. As NYU’s Koenig explains, “True partnerships between academics, professionals and autistic adults will be the way to improve services and supports for all autistic individuals and the autistic voice has to be central.”
For that reason, to create the website, NYU partnered with three autistic adult self-advocates: Jesse Saperstein, who developed an anti-bullying curriculum; Dr. Stephen Shore who helps students recognize and build on their strengths; and Zosia Zaks, who teaches self-advocacy. (Full disclosure: I am partnering with the NYU faculty and the self-advocates on an unrelated autism project.)
Zaks, who provides counseling services to autistic people and their families, learned the importance of self-advocacy from personal experience. “I had very little self-awareness when I was a teenager,” he said. “It’s not just about challenges. I had lots of strengths too, but no language. I learned to advocate for myself only by trial and error. But that took up a lot of energy and I missed out on so many opportunities.”
To help autistic children learn from his experience, Zaks created materials explaining what self-advocacy is and video examples of people advocating for themselves both at school and at work. Zaks believes that self-advocacy is a vital skill because, “The Americans with Disabilities act is a self-advocacy law. Once you are an adult, it is your responsibility to ask for and to arrange the accommodations you need to work or to live in the community.” And, as Zaks points out, self-advocacy is not about opting out of the community, but rather opting in. As he puts it:
Let’s say you have a sensory issue at work with the intense overhead lights. If you don’t even know what sensory issues are in general, and if you have no idea how to manage your specific sensory issues, you’re going to encounter huge barriers to success. Advocacy skills enable you to be proactive. What do you need to get back to work?
Like Zaks, Jesse Saperstein came to an interest in bullying through personal experience. Saperstein, the author of a memoir about life with Asperger’s, says, “A lot of what I do is cathartic and my curriculum is designed to give students what I needed as a young child and what would have made a difference.”
Interestingly, Saperstein’s personal experiences include not only an extensive history of being bullied, but also an example of when he bullied a less-popular student. Having been both victim and perpetrator, Saperstein brings expertise to Keeping it Real lessons on cyber bullying, blaming the victim, and bystanders.
In addition to his work for Keeping it Real, Saperstein speaks about bullying at schools and other organizations. He notes, “My presence is the first time the students are seeing an adult version of their fellow classmates who are often isolated or made fun of on a daily basis.” To show them what life as an autistic adult can be like, Saperstein designs his work “to flaunt my eccentricities, and I typically show off silly props like a paddleball, cup-and-ball toy, and bouncy balls.” He believes that “students are not given enough credit for their innate compassion. They simply need enough resources to promote this new consciousness.”
Stephen Shore’s work on Keeping it Real is only one of the many autism projects on which he works. An Assistant Professor of Special Education at Adelphi University, Shore openly discloses being on the autism spectrum. He comments, “Increasingly, I see individuals with autism achieving great success, fulfillment, and productivity when encouraged to follow their strengths — to the point of becoming regional, national, and sometimes worldwide experts in their area of interests.”
The work of Saperstein, Shore, Zaks, and other autistic self-advocates is inspiring. And if Autism Speaks was best known for partnering with autistic adults and funding projects like Keeping it Real, it could be an inspiring organization. Unfortunately, whatever good work Autism Speaks did in this instance is completely undermined by the tone-deaf words of Suzanne Wright. Even worse, Autism Speaks has a long history of excluding autistic voices and promoting fear and pity of autism.
An organization with the resources of Autism Speaks that was focused on working with the autistic community could fund countless projects like Keeping it Real. Rather than dismissing the lives of autistic children as hopeless, such an organization could partner with self-advocates to offer important resources that would help autistic children develop vital skills they need to make their way in the world.
Sadly, though, such an organization is currently as much a fantasy as Wright’s despair-filled world. Autism Speaks remains an organization largely opposed by the very community it claims to serve.
Fortunately, we have Keeping it Real — a site that stands as a rebuke to the founder of one of its funders. It’s an odd position to be in, but I’m glad the site is there. It presumes that autistic children have strengths, and it sets out to build on them. It does so with the best resource available to children on the autism spectrum — autistic adults. Their work will keep it real and make it better.
WORKING TO COMBAT THE STIGMA OF AUTISM by Al Baker, via NYTimes.com
Parents of autistic children, like Jaewoo Kwak, 8, can face stereotypes and misconceptions in the Korean-American community.
Autism, or the fear of it, chased one Korean mother from her Queens church. “I very carefully told the mom: ‘I think your child is a little different. Why don’t you take the test for autism?’ ” said the Rev. Joy Lee of the Korean Presbyterian Church in Flushing. “She told me, ‘Oh no, my child will be O.K.’ So then she quit. After that, she did not pick up the phone.”
Ms. Ko said her own mother refused to discuss Jaewoo with relatives and friends after he was given his diagnosis.
It crushed another Korean mother — twice. First, she said, when her son received the diagnosis, and again when friends saw it as a sign that she herself was sick. To cure him, they said, she needed psychotherapy.
Sun Young Ko, of Forest Hills, whose 8-year-old son, Jaewoo Kwak, was given a diagnosis of autism 18 months ago, said her own mother refused to discuss her grandson with relatives or friends. “She’s kind of hiding,” Ms. Ko said.
Raising an autistic child is hard enough, let alone raising one in a culture in which the stigma surrounding autism still runs high. Now, inspired by a 2011 study of a South Korean city that found relatively high rates of autism, a leading advocacy group is teaming with churches, doctors, schools and news organizations in Flushing, trying gingerly to bring Korean parents around to the idea that if there is something unusual about their child, concealing it and avoiding help are absolutely the wrong things to do.
“More so than other populations, Korean-Americans really measure their own self-worth, and the worth of the family, in terms of what the child is able to achieve and what the child means to the family,” said Roy Richard Grinker, a professor of anthropology at George Washington University and the senior author of the South Korea study.
“If I have a child with autism, there is no effect on our house value, on the ability to make friends and on an ability to get promoted at work,” said Dr. Grinker, who wrote the book“Unstrange Minds: Remapping the World of Autism” about life with his autistic daughter, Isabel, now 21. “A lot of Korean families fear that.”
It is a crucial moment for autism across the United States. The number of children who receive a diagnosis of autism has been rising for years, without any consensus about why, other than increased awareness of the condition. At the same time, autism itself is being redefined: the newest edition of the country’s manual for mental disorders, released weeks ago, collapsed some categories of autism, including Asperger syndrome, under the umbrella of “autism spectrum disorder.” Some experts have predicted the change will lead to fewer diagnoses, and hence cuts in public spending on therapy and special education.
In New York City, the number of public school students classified as having autism this year, 10,199, or roughly 1 percent of enrolled students, is up 50 percent from four years ago, according to the city’s Education Department. Diagnoses among Asian students have also jumped. But while they make up 16 percent of the school system, they account for only 8 percent of those with autism diagnoses.
The South Korea study, which was financed by Autism Speaks, the same advocacy group behind the Queens effort, screened 55,000 students in the Ilsan district of the city of Goyang. Researchers found that 2 percent of them were autistic, but that two-thirds of those students had not previously received a diagnosis or any psychological or special education services. The prevalence was surprising, because it was nearly twice the ratereported in the United States, according to the Centers for Disease Control and Prevention. A similar study is under way in South Carolina.
The Korea study attributed the large number of undiagnosed cases to the stigma of autism. In recent interviews, sometimes through translators, Korean mothers of autistic children in the New York area opened up about their experiences. Several said the diagnosis strained their marriages. One, Mee Hee Kim, said it contributed to her divorce. The mothers also described the subtle ways that they and their children were shut out of normal social or familial encounters, a problem parents from many cultures report, or how they isolated themselves, retreating from invitations to dinner parties or play dates.
Some also worried that their autistic children’s siblings would struggle to find spouses in the Korean community. Ms. Ko, 42, the mother of Jaewoo, said the sadness led her to contemplate suicide, though she never attempted it.
Often, a diagnosis leads to guilt.
“In my experience, so many people ask me: ‘Did you do something wrong? Do you guys fight each other in front of the kids?’ ” said Anna Im, the mother of a 14-year-old autistic boy. “Koreans believe these little things affect the child and they become autistic.”
The outreach effort in the Flushing area, where the bulk of the city’s 90,000 Korean residents live, began with a round of interviews in the community and an adaptation of autism literature for Korean readers. In late April, the local Korean news media were briefed on the project. Then the translated autism materials were spread to 60 pediatricians, preschools and early childhood centers.
In a year or so, researchers will measure whether several early childhood agencies that contract with the city are seeing spikes in requests for help from Koreans grappling with autism. The hope is that whatever is learned about the disparities can be used to assist other ethnic groups and immigrant populations.
“We are trying to build a model, for outreach and facilitation, that would support immigrant families, minority families, to access services available from school systems and from cities and states,” said Andy Shih, an official at Autism Speaks who is managing the initiative.
As diagnoses of autism have become more common, some early intervention providers have taken advantage of the growth in public spending, and lax oversight, by billing for services that were not needed or never provided. Dr. Shih acknowledged that some businesses might “exploit parents scared and confused about how to best support their children.”
That is why, he said, Autism Speaks took care in translating and disseminating the literature on autism, and engaged only with providers recommended by the city’s Bureau of Early Intervention. “We want to get it right and make it useful,” Dr. Shih said.
Unscrupulous providers are not the only potential pitfall. Young Seh Bae, 48, who leads a committee of the Korean American Behavioral Health Association and is the mother of a 16-year-old boy with autism, said she worried that a focus on Koreans, in both the South Korea study and the Flushing effort, could exacerbate stereotypes.
“When you look at the different cultures, and compare the disabilities issues, why do you have to just look at Korea?” she said. “Why don’t you look at certain parts of the United States? What about Oregon? Or Oklahoma?”
And though the study in South Korea was “rigorous,” Dr. Winston Chung, an assistant professor of psychiatry at the Geisel School of Medicine at Dartmouth, said it should be viewed carefully because the researchers used tools designed by a Western culture to measure children in an Eastern one. Typical behaviors in a “Confucian society,” where the norms for eye contact, gesturing social reciprocity and expressing oneself are “profoundly different,” and where the skill of nunchi — measuring someone’s mood and desires without speaking — is valued, could be misconstrued as autistic in some cases, he said.
“In Korean culture, harmony is prioritized, and some kids growing up with this social pressure might be better off keeping their heads down and mouths shut, and these tendencies could be mistaken for autistic traits from a Western perspective,” said Dr. Chung, whose parents were born and live in Korea.
Still, community leaders acknowledge that resistance to autism diagnoses “is a continuous problem,” said Assemblyman Ron Kim, a Korean-American who grew up in the Flushing area.
But it is better than a generation ago, he said, when families thought autistic children were possessed, “where they were literally demonized.”
- Autistic child’s breakthrough gains worldwide fame (kvue.com)
- David Mitchell: learning to live with my son’s autism (guardian.co.uk)
The power of love and social media has propelled family members of 2-year-old Tyler King into a spotlight for which they weren’t quite sure they were ready.
That spotlight is blue, and it shines on autism during Autism Awareness month in April.
Tyler’s 10-year-old brother, Cole Reedy, made a simple video for Facebook telling everyone how much he loved his brother, who had just been diagnosed in January with autism and 10 other disorders commonly associated with autism. Cole also asked people to display blue porch lights being sold by the national Autism Speaks “Light it Up Blue” campaign to support families dealing with autism.
“The outpouring of the community has been above and beyond belief,” said Tyler’s dad, Seth King.
King said the family has received responses from over 15 states, and Cole’s video has been shared by hundreds of people.
Cole says he was just trying to let others know that his little brother is “awesome” just the way he is.
“It’s nice that people know what it’s like and there are other kids with it too,” he said.
Tyler’s mom, Hannah King, who is a first-grade teacher at Villa Grove Elementary, said the family wasn’t quite expecting to “come out” in such a big way, after running the gamut of emotions through Tyler’s testing and diagnosis.
“We’ve learned to embrace the challenge instead of hide from it,” she said. “We’ve all come along way.”
The King family hopes to keep the momentum going Friday in their hometown of Villa Grove by hosting a Blue’s Cruise fundraising event. Families are asked to meet at about 7 p.m. at The Scoop ice cream stand on the south end of Main Street for a car cruise to view and count the dozens of blue porch lights that are displayed at homes and businesses around town.
For extra fun, cruisers can count the number of lights they see along the route, and the official number will be posted back at The Scoop.
The cruise is a free event, but 10 percent of the days’ proceeds at The Scoop will benefit Autism Speaks — plus money from sales of T-shirts and a special “Blue” music CD for the event.
Cassandra Gunter, owner of The Scoop, is helping to organize the activities and also sold blue lights from her shop.
“The Kings have embraced this diagnosis and have shared their talents and leadership qualities to encourage us to unite as a community and support families on their journey with autism,” she said.
The kids in the community will also get involved Friday by visiting The Scoop for special blue ice cream cones throughout the school day. Hannah King has organized field trips for the elementary students as a character building activity to demonstrate ways to support others and the community.
“I think it’s great that the kids are learning about it too, so they know we aren’t all the same and that’s okay,” Gunter said. “It’s definitely heightened awareness in this community.”
To finish out the month, Hannah King is working with a local fitness group, Chix in Training, to sponsor a family-friendly run through town. It will be at dusk and runners will carry glow sticks with them. Details are still being worked out for an evening in late April.
She says the best part of the experience has been connecting with other families with autistic children and sharing feelings and ideas about their experiences.
“We learn from other families and they learn from us, and that’s been the tremendous part of it,” Hannah King said.
If you go
What: Blue’s Cruise autism awareness fundraiser
When: 7 p.m. Friday, April 19
Where: The Scoop in Villa Grove
Cost: Participation is free; donations to Autism Speaks may be made at the Villa Grove State Bank to the Tyler King for Autism Awareness fund (all money will be donated to Autism Speaks)
- The 12 Myths Of Autism (beyondautismawareness.wordpress.com)
- The Faces of the Autism Spectrum: Meet Hannah! (mypicturedmoments.com)
Nick Lombardi, an incoming freshman class of 2017, will continue his dedication to helping others understand autism here at Manhattanville. Since a young age, Lombardi has worked to spread understanding and knowledge about autism to the larger community.
Growing up Lombardi’s younger brother Joey was diagnosed with non-verbal autism. Since the young age of five years old, Lombardi was always trying to watch out for his younger brother. Autism has often been called the “invisible diagnosis”, people with the condition have no outward appearance, yet are unable to function on a day to day basis. In an effort to end the misunderstanding, Lombardi created a pin stating “I’m not misbehaving I have autism, please be understanding”.
“My thought was if I was able to give Joey a way of letting others know he was doing the best he can, that he had a disability, folks would be more understanding,” said Lombardi. “My pin has done just that. When Joey wears the pin it explains his challenges and like magic, folks are more sensitive to my brother.”
Through the sales, Lombardi has helped to raise over $75,000 for autism awareness and hopes to remove the barriers between those diagnosed with autism and those unacquainted with the condition. The pins are also distributed by Autism Speaks, an autism advocacy program. To honor his continual work Lombardi’s home town of Greenburgh, NY declared January 23, 2013 “Nick Lombardi Day and presented him with a citation of achievement.
“I realized the more folks know about autism, the kinder this world would be for my brother and kids like him,” Lombardi stated. “I gain the pride of knowing I am doing something, even if it’s only one person, to change their view of my brother and others like him. To know that, is the best feeling you could ever have. There is no real word for it.”
Lombardi believes that beginning Manhattanville in the Fall will provide him with the opportunities and resources to continue his efforts for autism awareness. Having visited the campus before applying to colleges, Lombardi got his first glance at the pride of a service-orientated college. Planning to major in Special Education and anticipating to continue his work with autism awareness, Manhattanville’s continuing dedication to community outreach and service is the perfect match for Lombardi.
“Manhattanville gives me the best of all worlds,” Lombardi said. “It’s a beautiful school, with respected programs in the career I desire, and has its heart and priorities in the right place. Where can I find a better fit?”
- The Rewards of Knowing Someone with Autism (pattidudek.typepad.com)
Grover doing the “Michigan is Listening” pose outside of the Fox Theatre.
For most children, attending a special event like “Sesame Street Live” is an outing filled with songs, laughter and, if they’re lucky, a hug from Elmo or Cookie Monster.
Children with autism may be at the same event, but they sometimes see things in an entirely differently way. A sudden change in lighting, the huge amount of sensory stimulation and sudden, loud noises like confetti cannons may cause an adverse reaction, upsetting the child and parent.
That is why this Friday’s 7 p.m. performance of “Elmo Makes Music” is a milestone. The show will be presented as what is being called an Autism Friendly Performance, a first for the Fox Theatre. The goal is to both help families feel comfortable within this environment and to educate staffers, performers and audience members on what makes the theater experience more enjoyable for children with autism spectrum disorders and other sensory difficulties.
“It is impressive that this iconic theater is standing up for autism and has the courage to support this initiative,” said Stefan Kogler, one of the event’s organizers and co-communications chair for Autism Speaks, North America’s largest autism science and advocacy organization.
Kogler also is parent to Brogan, his 12-year-old son with autism. Kogler said it is notable that nothing was changed in this performance of “Sesame Street Live” to make it palatable to these families. Rather, the VEE Corporation, the producers of Sesame Street Live, and Olympia Entertainment worked with Autism Speaks to ensure a pleasant, successful experience for those in attendance.
For example, the theater is providing production notes to parents ahead of time, to prepare their children for what to expect, should anything be a potential trigger. Quiet areas will be set up inside the venue to allow families to take a break for a few minutes and extra spacing will be incorporated in some seating areas to allow for room to move around. Also, gluten-free concession food options will be made available.
These are small changes for sure, Kogler said. But they make a world of different to a family that might otherwise decide staying home is easier than a trip out.
“In many cases, it’s difficult to go out as a family because we’re not sure how Brogan is going to react to the environment,” Kogler explained. “Someone might think he’s acting out. They look at me like I’m a bad parent. I’ve had people ask me why I’m not disciplining him.”
Helping Brogan and others learn to adjust to their surroundings also is an important part of working with them, so having an autism-friendly environment provides a safe zone to do so, Kogler added. And he’s come a long way since his diagnosis at age 4. In fact, Kogler jokes that while his son was largely silent until then, “we cannot keep him quiet” now.
A long-term goal for Austim Speaks is to enlist more venues to join this effort. This is one facet of its “Michigan is Listening” initiative, which began last July. The initiative is a statewide awareness program that asks the people of Michigan to pledge to tell 10 people about autism.
Since then, groups including the Palace of Auburn Hills and all of Michigan’s White Castle restaurants have stepped up to become destinations that have committed to offering welcoming environments to individuals on the spectrum.
“We wanted to partner with locations around the state that are committed to making their environment autism-family friendly. We were really pleased with how Olympia Entertainment and Tom Wilson (President and Chief Executive Officer of Olympia Entertainment) embraced this idea,” Kogler said.
“If everyone in the state just told 10 people about autism, it would be such a help in raising awareness, helping families receive an early diagnosis and give these kids a fighting chance. The more educated we are the better,” Kogler said.
Olympia Entertainment, a Detroit-based company owned by entrepreneurs Michael and Marian Ilitch, is one of the country’s most diverse sport and entertainment companies and the largest organization of its kind in the mid-west. The company owns and operates Detroit’s Fox Theatre, City Theatre and also books and operates Joe Louis Arena and books Comerica Park.
Tickets ($35, $22, $17 and $9) are on sale now. A portion of the proceeds from the sales of select tickets ($9 to $22 range) will be donated to Autism Speaks and can be purchased by calling the Olympia Entertainment, Inc. Group Sales department at 313.471.3099. Tickets are available to all members of the public and purchasers should specify they are interested in the Autism-friendly performance.