Learning about autism in Nanjing, China

by Patricia Wright

It’s been about a month since I returned from working in Nanjing, China and I’m still digesting the incredible experience. The opportunity to engage in international work is always a privilege. I like to think that when I am invited to work in another country, the experience will include equal parts of my contributing expertise and my learning how another culture approaches service delivery for individuals with autism. I think I learned more than I contributed on this trip!

I was invited to work with staff members from the Five Project. The Five Project and its team members have been promoting autism awareness and professional skill development in China since 1992. The time in China included providing intensive professional development to the Sanxin training program, an educational program that serves young children with autism. The educators at Sanxin were keen to increase their skills in evidence-based practice in autism treatment.

I also got to spend time with the medical and educational professionals at the Brain Hospital in Nanjing to discuss diagnostic practices. In the mid-1980s, the Brain Hospital was the first place in China where autism was diagnosed. The Brain Hospital continues to be the primary diagnostic center for Nanjing, a city of almost 7 million people.

A community training for parents and care-providers at the China Disabled Persons resource center in Nanjing was also on the schedule. The combination of these activities really made for a rich experience.

One of my favorite activities was time spent with Zhan Ge, a young woman with autism who lives in Nanjing. I was fortunate to be invited to the home of Zhan Ge’s parents. They have known Helen McCabe (the Five Project’s Board President) for almost 20 years, and the opportunity to spend time with Zhan Ge and her family was really delightful.

Learning and contributing: probably the goal for all of my time engaged in work. Somehow the learning seems more obvious when I am working in a culture that is not familiar. I’m already looking forward to learning more on my next international adventure!

Book review: Paul Offit’s “Autism’s False Prophets”

by Lynn Sinnott

Follow the money. It’s a common thread in many mystery books. And so it goes with Dr. Paul Offit’s book Autism’s False Prophets, which details the history of how autism and immunizations have been linked, who benefited from that link and what motivated them to encourage the public to believe there was a link.

It also opens for scrutiny the science and facts that clearly dispel the belief that immunizations/mercury cause autism. The book exposes the manipulation of science and the purposeful misleading of parents, politicians, lawyers, and the press of these false theories and conjectures. Those who were misled spent millions of dollars to prove their theories and develop alternative therapies, wasting time and resources that could have been spent on finding and refining evidence-based treatments and even helping to find a cause.

Dr. Offit’s book is easy to read, what I would call a quick read. His writing is fully footnoted — 35 pages of them, so there is no question about where his information has been derived and what can be “backed up” by scientific facts. While reading the book it is almost unbelievable that the connection between autism and immunization could have gotten as out of control as it did. Understanding the money trail sheds a whole new light on why it happened. While reading the book and learning, again, my 8th grade science facts about the null hypothesis, it helped me understand why good, well known immunization and pediatric specialists were unable to address this proposed link in a way that would have clearly sent a message that autism is not caused by immunizations.

In the book we learn the financial benefits accrued to those who propagated the theory of a link between autism and immunizations and/or mercury. We also learn the truth about preservatives and how they work and the amounts and types actually in a dose of an immunization.

This book is worth reading, if for no other reason than to clearly understand the counter argument to the notion that “immunizations are the cause of autism.” This book also leaves readers better equipped to decide what the real causes of autism might be and to choose the correct treatments for a child with autism.

A message of hope from a social worker

by Jennifer Friesen

I am pleased to introduce Bridgette Andrade, a Social Worker here at Easter Seals North Texas, as a guest blogger today.

A message of hope
by Bridgette Andrade

As a social worker at Easter Seals North Texas (ESNT), I work with parents and families from both our Autism Treatment Program (ATP) and rehabilitative services. I meet with families daily to provide additional resources and support to assure their basic and emotional needs are met.

Parents raising children who have disabilities face ongoing challenges. I feel the parents are the critical link to their children’s progress and successes, and I encourage parents to speak about their challenges and stress. Supporting the parents’ needs empowers their strengths in parenting and abilities to face challenges.

A tragedy took place in one of the communities served by ESNT that greatly affected many of us. Zain and Faryaal Akhter of Irving, Texas were murdered by their own mother. A CBS News story reported what the mother said during the 911 call:

When the operator asked the woman why she attacked her children, she said, “They’re both not normal, not normal. They’re autistic. Both are autistic.” Pressed further, she said, “I don’t want my children to be like that … I want normal kids.”

While ESNT did not know or work with this family, this unfortunate story brought tears to my eyes and caused me to reflect about the wonderful children with autism and inspiring parents I have met working at ESNT. I thought about the mother of the murdered children and how she must have felt alone, hopeless, and desperate.

How could this devastating event be prevented? There is not a way to bring back the precious lives of Zain and Faryaal, but their story has moved many parents of children with autism and ESNT to speak out about hope. Hope can be found within the smiles, laughter, and successes parents see in their children. Hope can be found within educating ourselves and the community about autism and the resources available.

The number of children being diagnosed with autism is rising. The one consistent message Easter Seals hears from families — after the initial apprehension and anxiety of learning their child has autism — is an overwhelming concern about the life-long supports their child with autism may need to be independent. Our Living with Autism Study results revealed that parents raising children with autism are very concerned about the future independence of their children. Parents raising children with autism also expressed concerns related to their own well-being, marriage, and raising other typically developing children.

Let’s face it. Parents of children who have autism deal with more stress and challenges than parents raising typically developing children. Parents need support to find ways to cope and manage stress. If you are a parent of a child with autism, please know you are not alone. Services, support, and funding are available. Across the country, Easter Seals is the leading provider of services for people with autism today. An example: the Autism Treatment Program here at Easter Seals North Texas serves children with autism from ages 3 to 8 years of age. Our program is interdisciplinary and includes Applied Behavioral Analysis (ABA). The program is funded with a grant through the Department of Assistive and Rehabilitative Services. Children come into our clinics in South Dallas and Carrollton eager to play with their therapists and other children.

Easter Seals is proud to continuously hear positive feedback from our parents in ATP. We have heard our families say, “Easter Seals North Texas has given me a sense of hope.” I personally feel privileged as a social worker at ESNT because I am able to share in the joys and successes working alongside the parents.

To read more about one mother’s heartening perspective that aligns hope and happiness, link to this story from CNN.

Remembering Dr. O. Ivar Lovaas

by Paula Pompa-Craven

I was so sorry to hear that Dr. O. Ivar Lovaas, a respected and revered pioneer in the treatment of autism spectrum disorders, died this week. Dr. Lovaas was 83 years old when he died from natural causes at a Los Angeles-area hospital, surrounded by his family. His son, Eric, will continue his father’s research and treatment, and The Lovaas Institute will continue helping people with autism around the world.

I started my training with Dr. Lovaas at UCLA’s Autism
Project while I was doing my undergraduate work. It was an incredible learning experience and really set the foundation for my work in the field.

Dr. Lovaas expanded on the use of Applied Behavior Analysis (ABA) which supports people with autism to develop tools and skills needed for day-to-day life. His work began in the 1960s and has helped thousands of people with autism across the globe. I am appreciative of the work of Dr. Lovaas and celebrate his contributions to the autism community.

Fraternal Order of Police and Easter Seals make a winning team

by Maurice Snell

The Fraternal Order of Police is a long-time contributor to the services at Easter Seals Metropolitan Chicago. On July 24, I participated in a Fraternal Order of Police (FOP) annual conference in Rock Island, Illinois to talk about the Therapeutic School and Center for Autism Research.

My presentation began with sharing to the FOP members my life story living with autism. I also talked about the importance of building Phase 2 of the school, which will be named the Fraternal Order of Police Therapy Pool and Gymnasium, because of the FOP’s charitable contributions to Easter Seals Metropolitan Chicago over the years.

The new gymnasium will have the amenities that will benefit individuals with autism. For example, it will consist of a therapy pool that would change temperatures to relax the muscles of each student. The fitness room will have a much bigger space for students and clients with a bench pressing station, weights and other equipment. It will also benefit those who are competing in Special Olympics.

The new project would take place during the 2010-11 fiscal year if the timing is right. I would like to thank FOP Easter Seals Committee Chairman Rocky Nowaczyk for inviting me to their conference. I would also like to thank all of the members of the Fraternal Order of Police for its continuous contributions to Easter Seals, and especially to Easter Seals Metropolitan Chicago. Together the Fraternal Order of Police and Easter Seals make a winning team!

CENTURY 21 photo-sharing campaign to benefit Easter Seals autism services

by Beth Finke

Have an inspiring photo of the cutest kid on earth and want to share it with the world? Here’s a way you can do that and help Easter Seals at the same time!

CENTURY 21 has just launched 21st Century Child: Picture the Future, a nationwide online photo-sharing campaign that will benefit Easter Seals autism services. Parents, grandparents, aunts and uncles can upload inspiring photos of kids (age 5 or under) and CENTURY 21 will make a $1 donation to Easter Seals for each entry submitted.

Participants can share their page with their social networks, encouraging others to Act for Autism with a donation to Easter Seals. Families that raise the most funds through their page can win educational prizes for their child.

Century 21 Real Estate LLC has been supporting Easter Seals for more than 30 years. In total, the CENTURY 21 System has raised more than $100 million on behalf of Easter Seals and the individuals with disabilities and their families that we serve. Log on to 21st Century Child: Picture the Future to participate. Your inspiring photo of the cutest kid on earth can do a world of good to raise money to help children with autism.

Find a job that you love and you’ll never work a day in your life

by Bob Glowacki

I am pleased to introduce Nicole Berlowski as a guest blogger. Nicole is a senior therapist here at Easter Seals Southeast Wisconsin and will describe her journey to where she is today, supporting families and people living with autism.

“Find a job you love and you’ll never work a day in your life”
by Nicole Berlowski, MS

Being a line therapist, and now a senior therapist, has been one of the most rewarding opportunities for me. During my junior year of college, I decided to look for a part time job. I remember seeing a posting for the line therapist position in a local newspaper and decided to apply for it. For those of you who don’t know, a line therapist works one-on-one with a child with autism, often in their home.

I was interviewed, offered a position and placed on my first team. I was excited for the job, yet completely unaware of the amazing career that awaited me. On my first day I was eager to get started, but nervous about my first meeting with the family I would be working with. I wasn’t quite sure what to expect, but after completing my training I felt more confident and excited to be on my own.

It took me a few months to get comfortable with programming, but with solid resources and good people supporting me I let loose. I made a concerted effort to be as creative as I could in order to make a difference in the lives of the family that I was working with.

Within the first few months I noticed changes in the child we were working with. We taught the child how to ride a bike, use the bathroom, and eventually hold a conversation. I would leave work at night feeling like I made a difference, and I would wake up in the morning excited about the opportunities ahead. Words cannot describe that feeling that I would get after the parents recognized and participated in the progress of their child.

At Easter Seals Southeast Wisconsin, we follow the child’s motivation and set up situations to target attainable goals and skills to enhance the lives of not just the children, but their families, too. Over the past four years I have seen monumental changes with the children I’ve worked with. It is a passion of mine to support therapists so that families can learn strategies that will help children obtain goals that no one thought possible.

I once heard the saying “find a job that you love and you’ll never work a day in your life.” Being a line therapist definitely was a job that I loved. I loved it so much, in fact, that I decided to make a career out of it. I went to graduate school and got a Master’s degree, focusing on autism spectrum disorder. I have been living my life as a senior therapist for the past 3 years without looking back. And yes, I still wake up every morning excited about the opportunities ahead!

Meeting the needs of adults with autism

by Patricia Wright

Easter Seals is proud to be part of Advancing Futures for Adults with Autism (AFAA), a consortium of twelve organizations that promote the awareness of the needs of adults with autism. On July 15, the AFAA hosted the Autism Congress in Washington D.C. It was the culmination of one and a half years of work!

Back in January of 2009, AFAA held a think tank in New York City that included families and individuals, program directors, university professors, public policy authorities and specialists from both the public and private sectors. Housing, employment and community integration were just some of the many topics addressed there.

After gathering this information during the think tank, the AFAA moved in to phase two: national town halls.

Last November, over one thousand people (including caregivers, advocates, elected officials, family members, and adults with autism) participated in discussions across the country and made recommendations on meeting the needs of adults with autism.

All this hard work culminated last week, when these recommendations were delivered at the Autism Congress.

The Autism Congress was a fantastic event attended by legislators, individuals with autism, family members, service providers and many others. The work from the Think Tank and the Town Hall provided a wonderful platform to let our policy makers know what is needed, such as access to services and supports. Currently, the needs of adults with autism are unmet and woefully underfunded. Federal policy changes are one step we can make towards improving the outcomes for adults with autism.

The highlight of the Autism Congress? The Stakeholder Panel. No question. The stakeholder panel was rich with personal stories from adults with autism. Personal stories are such a wonderful way of conveying the hopes, dreams and needs of adults with autism. For an idea of what I mean, check out these stories of hope on the Easter Seals web site — six of them are about adults with autism.

Advancing Futures for Adults with Autism accomplished its three activities (think tank, national town hall, Autism Congress), but it goes without saying Easter Seals and the other twelve organizations will continue to advocate for services and supports that ensure all adults with autism experience a high-quality life.

The law’s on our side: happy anniversary, ADA

by Beth Finke

My guess is that when President George H. W. Bush signed the Americans with Disabilities Act (ADA) into law 20 years ago, people with autism weren’t on his mind. But thanks to the way the law was written, and how it has been interpreted, people with autism are benefitting just like people who use wheelchairs or people like me, who are blind.

The ADA is landmark federal legislation designed to improve access to services and employment opportunities to the 50 million Americans living with disabilities. It was intended to eliminate illegal discrimination and level the playing field for those of us who have disabilities, and an op-ed piece I wrote for yesterday’s Chicago Tribune describes how ADA legislation can, at times, be used to do just that: make things fair.

The essay is about a young woman who was fired from her job when her boss realized she has a visual impairment. Jocelyn Snower took her case to the Equal Employment opportunities Commission, and last month a federal judge here in Chicago entered a consent decree requiring her employer to pay Jocelyn $100,000. From my Tribune piece:

As for me, I started losing my eyesight in 1984, when I was 25 years old. At first I didn’t use a white cane or a guide dog. I quit driving or riding my bike, but I could still see well enough to walk to work. Most of my day was spent counseling college students on study abroad options; I could have done that with my eyes closed.

As my eyesight got worse, though, I started making mistakes in the office. I still remember spilling grounds all over the floor on my way to make the morning coffee. I had to sit close to my computer screen to see the words. I ran into tabletops. At one point my boss took me aside and told me I wouldn’t be going to the annual convention with my colleagues. “You’ll embarrass the office,” she said.

Months later, my contract was terminated.

The Americans with Disabilities Act was passed five years after I lost my job. I am totally blind now, and I use speech software to write for magazines, newspapers and public radio. I’ve had two books published, and I teach a weekly memoir-writing class at the Chicago Cultural Center, sponsored by Mayor Daley’s Commission on Aging. Twice a week my Seeing Eye dog, Hanni, leads me to the Willis Tower, where I moderate this blog about autism for Easter Seals.

It’s true we have a long, long way to go before hiring practices are totally fair to those of us who can’t see, or use wheelchairs, or have autism. But things are moving in the right direction. And thanks to the wisdom and determination of all the many, many people who banded together to get the ADA passed 20 years ago, we have the law on our side.

Meet Daniel: a true Texas Star

by Jennifer Friesen

Easter Seals North Texas has been quite busy this year. Ever since we merged with the DFW Center for Autism last January we’ve been able to serve even more children with disabilities in our community.

One of our new programs is the Texas Star Academy (TSA) in Grapevine, a full-day preschool for both typically developing children and children diagnosed with an Autism Spectrum Disorder. TSA is a replication of the Walden model at Emory University. It provides services within a highly structured and supportive environment, targeting skills that are typically difficult for children with autism: communication, socialization, and appropriate engagement throughout the day. Children in the preschool receive services within an Applied Behavior Analysis (ABA) construct and have the opportunity to interact with neuro-typical peers since it is an inclusive setting.

One child that has benefited from services offered at TSA is Daniel. He began attending the ABA program in the summer of 2007 showing severe deficits in social interaction, communication, and play skills. With a well-tuned behavior intervention program and a lot of dedicated intervention by his parents, Daniel learned to communicate very effectively, made several friends, and blossomed in all areas in the years that followed.

Daniel graduated from the program in 2009 and last year attended a regular kindergarten program in a local public school with no additional assistance in the classroom required. He returned just for the summer this year alongside some of the friends he made at Texas Star Academy as a typical peer for our students needing ABA support.

Daniel’s brother attends also as a typically developing student in the program and the two boys are very popular with all of the children. Daniel and his family are truly giving back by sharing his amazing friendship skills and love with all of us here at Texas Star Academy, and TSA has been a wonderful complement to the other programs here at Easter Seals North Texas, including the Autism Treatment Program, Outpatient Rehabilitation Program, and our Respite Care Services.