WellCommons

Kansas University researchers are continuing to break new ground in the fight against autism and other related disorders.

Much of that research is done on the Lawrence campus and at KU Medical Center under the auspices of KU’s Kansas Center for Autism Research and Training.

All kinds of projects are ongoing, from research into behavioral interventions, to new kinds of medical treatments to using eye movements as a way to provide an earlier diagnosis.

“With the rising numbers of kids with autism, I think it’s becoming a real red flag to society,” said Matt Reese, a KUMC researcher and co-director of the K-CART research center.

K-CART, founded in 2008, has provided so-called “discovery grants” to help spark new research.

“The discovery grants are like pilot studies,” said Debra Kamps, director of K-CART. “They direct us to additional research and provide data to support research grant proposals.”

The grants are provided by a combined $1 million contribution from KU and KUMC over five years. Faculty compete for the relatively small grants, typically ranging from $25,000 to $40,000.

They are bringing forth new techniques, like the use of brain imaging technology to study brain patterns in developing children, Kamps said.

Still, she said, some of the greatest successes have come in intervention work.

“We’re working on enabling children to interact with their parents,” she said.

Those findings streamlined with a recent article in the Wall Street Journal, which reported that studies have shown secretin, a hormone thought to be a potential treatment for autism spectrum disorders, has shown no benefit for children with the disorders.

The article said intensive behavioral treatments involving hours practicing skills with a therapist weekly for years have been effective, along with some medical treatments. Many of those treatments, however, still lack high-quality research to back their effectiveness, and can involve unwanted side effects.

Doctors at KUMC are using telemedicine and videoconferencing technology to reach patients in the far corners of the state, in addition to traveling to help people in person, too.

“We’re finding we can just as accurately diagnose over telemedicine,” said Matt Reese, co-director of K-CART who works at KUMC. “And people seem to be just as satisfied.”

Kathryn Ellerbeck, a developmental-behavioral pediatrician at KUMC, works on autism research, and has examined the hormone oxytocin, but is in the very preliminary stages of the research, and is now looking to see if the hormone levels are different in children with the disorders.

“There are not as many specific medical things we can do,” Ellerbeck said. “I wish we had great things that could take care of making these social things better, but we just don’t. Not yet, anyway.”

This story has been updated to correct an error relating to the hormone being studied by Kathryn Ellerbeck.

Here’s a dose of health news from WellCommons, around town and elsewhere:

LINK BETWEEN AUTISM AND VACCINE 'ELABORATE FRAUD'

In an editorial published Wednesday, the British Medical Journal declared the 1998 study by Andrew Wakefield that implied a link between the MMR vaccine and autism “an elaborate fraud.”

The study already has been retracted by 10 of Wakefield's co-authors.

Dr. Fiona Godlee, BMJ editor in chief, says, “The MMR scare was based not on bad science but on a deliberate fraud” and that such “clear evidence of falsification of data should now close the door on this damaging vaccine scare.”

A series of three articles in the BMJ starting this week reveal the true extent of the scam behind the scare. The series is based on interviews, documents and data, collected during seven years of inquiries by investigative journalist Brian Deer.

Dr. Stephen Lauer, vice chairman of pediatrics at Kansas University Hospital.

In response to the editorial, Dr. Stephen Lauer, vice chairman of pediatrics at Kansas University Hospital, had this to say:

“One of the great frustrations in pediatric medicine today is the reluctance of parents to vaccinate their children against a variety of deadly diseases. Much of this resistance stems directly from Dr. Wakefield's paper and subsequent work on his part maintaining a tie between the MMR vaccine and autism.

“The fact that this work was not just wrong but fraudulent makes the situation even worse. In many cases, concerned but misled parents have declined to vaccinate their children against measles  - a disease that kills at least 150,000 children worldwide - as well as numerous other diseases. The recent increase in deaths from pertussis in California is another example of completely preventable deaths linked to the decline in vaccination rates.  

“Study after study in numerous countries involving hundreds of thousands of children have never shown any link between autism and any vaccination. That Dr. Wakefield's lies have led to increased illness and deaths among innocent infants and children is a social and medical disaster.”

KIM'S PAGE ON CARINGBRIDGE SITE

Lawrence resident Kim Banning-Bohmann - who has scleroderma, also known as the “hardening disease - now has a CaringBridge web site. (We first published her story on WellCommons in late November.)

To visit, click on CaringBridge.org. The name prompt is kimbanningbohmann.

Kim said her friend Jen Nelson set up the page for her.   She will be leaving Jan. 14 for Northwestern Memorial Hospital in Chicago, where she will undergo an autologous stem cell transplant. Doctors expect she will be able to return home March 14.

While in Chicago, friends and family will be with Kim and updating her CaringBridge page.

“I feel it (the site) will be a wonderful way for me to feel connected to all my loved ones while being gone for such a long time,” she said in an e-mail.

National Stalking Awareness Month poster. by kbritt

STALKING AWARENESS

January is National Stalking Awareness Month.   In Kansas in 2009:

• 820 incidents of stalking were reported to law enforcement.

• 4,756 protection from stalking orders were filed in courts.

“We know that for every victim who reports to law enforcement or who seeks a protection order, there are countless others who aren’t coming forward. We encourage communities to work together to provide support for victims, to hold offenders accountable and to prevent future tragedies.”

— Joyce Grover, executive director of the Kansas Coalition Against Sexual and Domestic Violence

Nationally:

• In one out of five cases, stalkers used weapons to harm or threaten victims.

• In 76 percent of female homicides, the victims were stalked by their partner prior to their murder.  

• In 89 percent of female homicides, the victims had been both physically assaulted and stalked in the 12 months prior to their murder.

• 46 percent of stalking victims experience at least one unwanted contact per week.

• Three out of four victims are stalked by someone they know.

• One in eight employed victims lose time from work.

• One in seven victims relocate as a result of being stalked.

The Kansas Crisis Hotline number is 888-END-ABUSE (888-363-2287).

The KCSDV website includes information about where to find services for survivors. For Douglas County:

• GaDuGi Safe Center - 841-2345.

• The Willow Domestic Violence Center - 800-770-3030 or 843-3333.

Ethan Folks, a Eudora 10-year-old with autism, walks his bike up to his home Wednesday. Ethan and his family will be participating in Walk Now for Autism Speaks on Saturday for the third time. The goal of the event is to raise awareness for autism and to raise funds for autism research. by Nick Krug

By Margie Carr

Autism is a complicated and often misunderstood condition. Just ask those whose lives have been touched by it.

“He used to be known as ‘The Adam Bomb,’” says Linda Weinmaster, of Lawrence, whose 18-year-old son, Adam, was diagnosed with autism when he was 5 years old. “He would throw himself on the floor with terrible temper tantrums, and he would destroy everything. People just assumed I was a bad parent.”

Or ask Jacqui Folks, Eudora, whose 10-year-old son Ethan has autism. For years Folks struggled going out in public.

“It was so much easier to stay at home than risk going out and Ethan having a meltdown,” she says. “There are so many triggers out there, and we just can’t control them.

“Autism can be very isolating,” Folks adds. “I remember not going to a family dinner once because it was on the Plaza. I wanted to go celebrate with everyone, but I didn’t want Ethan to act up and throw his food.”

Autism is a general term used to describe a group of complex developmental disorders, and while it affects no two individuals in the same way, there are common characteristics among those who suffer from the disorder, including sensory processing challenges, speech and language delays and impairments, and trouble with social interaction.

“Their sensory systems are on full-tilt 24 hours a day,” Folks says.

Dealing with those challenges can be time-consuming and expensive. In addition to weekly speech therapy, Ethan has a private in-home therapist who comes several days a week, to provide social and emotional assistance. Few of these services are covered by health insurance.

Weinmaster, who found help with sensory integration therapist in the Lawrence school district, says, “With autistic kids it’s a constant battle for rights and services. And our insurance doesn’t cover any of this.”

Understanding the myriad of issues facing those touched by autism, Autism Speaks was founded in 2005 with the goal, according to their website, “to change the future for all who struggle with autism spectrum disorders.”

The organization is dedicated to raising funds and public awareness for autism, advocating for families (which includes lobbying to get necessary services covered by insurance companies) and offering support to individual families.

In the five years since the organization has been established, Autism Speaks has awarded millions of dollars in grants, including $941,556 to researchers in Kansas and Missouri who are investigating the causes and the most effective treatments for autism, according to regional Autism Speaks walk director Jennifer Smith.

For families who have recently received the diagnosis, Autism Speaks offers a 100-day kit, which provides information on the disorders covered in the autistic spectrum, including information on causes and symptoms, resources, helpful forms and safety tips.

On Oct. 16, Folks and her family will join thousands of others to support the work of the organization at the Kansas Speedway at Walk Now For Autism Speaks.

This is the third year of the walk, and while cold weather and flu threats kept people away last year, they still managed to raise $190,000 and had over 5,000 in attendance according to Smith. The goal for this year is to have 8,000 participants and raise $200,000. While there is no registration fee, Smith encourages donations to help support the cause.

“We will have activities for all ages, a sensory tent, a teen tent … We also have a food area called Taste of Support, and they are local restaurants that support the autism community,” Smith says. “When Ethan was first diagnosed with autism, I spent all my time in the library trying to figure out what we should do,” Folks says. “I would have given anything seven years ago to have Autism Speaks.”

Event details

What: Benefit walk along the Kansas Speedway, with activity and food tents for the family

When: 10:30 a.m. registration and 11:45 a.m. walk ceremony Saturday, Oct. 16

Where: Kansas Speedway

Cost: Donations accepted

More information: WalkNowForAutismSpeaks.org.

Kansas University researchers are seeking participants for a study that focuses on teaching literacy skills to people who can’t meet their daily needs verbally.  

They are seeking children and adults, ages 3 to 50, with cerebral palsy, autism, or Down syndrome to participate in the Accessible Literacy Learning (ALL) Research Project.

The project includes assessment and instruction in the basic skills of literacy.

For more information, contact Jane Wegner, director of KU’s Schiefelbusch Speech-Language-Hearing Clinic, at jwegner@ku.edu or 864-0645.

Kansas University is seeking families who have children with autism to participate in an innovative project that provides specialized training in the areas of autism spectrum disorders and augmentative/alternative communication.

The project is called Communication, Autism, and Technology, and it pairs KU graduate students in speech-language pathology with families. The project gives students a hands-on learning experience while also providing support to families.

Participation in the project begins Aug. 16 and lasts for at least one year, with the potential of participating for two years. The application deadline is Aug. 6.

If you are interested in applying for this project or would like more information, contact:

• Ann Klockau, project coordinator, at aklockau@ku.edu or 864-0644.

• Jane Wegner, project director, at jwegner@ku.edu or 864-4690.

http://www2.ljworld.com/videos/2010/j... From an outsider’s point of view, the scene looked pretty chaotic as students and staff from Free State High School’s summer autism program took a trip to a restaurant.

Of the dozen students on the outing, several were yelling, one was crying, and others expressed emphatically that they simply didn’t want to eat there.

One by one, staff members worked to calm the students.

The program and the community outings are all part of social skills lessons the program emphasizes during the summer months when the students are away from regularly scheduled classes.

“These kids need to be out in the community as much as anybody else,” said staff member Emily Hughes. “Our biggest goal is to help them learn how to be independent.” Through the five-week program, the staff works with the 13 enrolled students on handling money, ordering food at restaurants and how to act when interacting with the community.

Staff also learn about each student’s verbal and non-verbal behaviors as their way of communicating.

“It’s their way of telling us ‘this is uncomfortable,’” said Becky Armstrong, one of the lead teachers for the program and a speech pathologist at Free State. “Our job is to try and figure out what they’re trying to tell us.”

The program, which runs four hours each day, Monday through Thursday, builds and maintains the skills the students learn during the autism program at Free State during the school year.

“A lot of times there can be regression throughout the summer,” Armstrong said. “And then sometimes when they come back to school it takes a month or so to catch back up to where they were.”

The regular outings help to maintain those skills, said Jake Thibodeau, another lead teacher for the program.

Thibodeau, who engages the students in the classroom like a seasoned stand-up comic, said he worries that when the group is out in the community, the public sees only what at times can be disruptive and intense behavior.

“They’re just trying to express themselves,” he said. “They have wants and needs just like everybody else. ... I want the community to see these people as individuals.”

For the staff, the work can be challenging. The key, say the staff, is patience and kindness, leading to some strong relationships.

The summer program is wrapping up, but the students and many of the staff will work with each other once school starts in the fall.

On a recent outing to a dance studio, hugs, high-fives, praise and laughs kept the students, and the staff, smiling.

“This is why we do what we do. Because we love working with kids with special needs,” Armstrong said. “It’s a great, awesome, gratifying experience.”

Doug Stephens watches as his son, Zach, left, flies his remote control airplane July 2, 2010, at a park new their home in Lawrence. Zach, 18, has atypical autism asperberger’s syndrome. Bert Nash Community Mental Health Center has provided services, including case management, for Zach since he was in grade school. Doug Stephens has served on the board of directors since 2005. by Kevin Anderson

One in four American adults will suffer from a diagnosable mental health disorder during the next year.

Yet there’s still a stigma about mental health.

Patricia Roach Smith, chief operating officer of Bert Nash Community Mental Health Center, said she hears these words often: “It happens to other people. It’s a unique problem.”

But it’s not.

Bert Nash provided services for 5,915 Douglas County residents in 2009. On average, 12 new clients were admitted for services every business day.

Patricia Roach Smith is chief operating officer at Bert Nash Community Mental Health Center. She started working at Bert Nash in 1987 as a part-time therapist. She also has been director of Child and Family Services and community development director. by Mike Yoder

Another misconception is that mental health disorders are not treatable, but they are. It’s important to seek help.

“I think a lot of people really try to kind of pull themselves up by their bootstraps and tough it out, and it’s just so unnecessary. It’s very treatable,” Roach Smith said. “And we know the longer people go with untreated depression, the more depressed they get and it actually causes some brain damage. It really is a disorder that you don’t want to leave untreated.”

She said research shows that more than 65 percent of medications for mental health disorders are written by primary care physicians. That’s because the average person’s mental health disorder will manifest in physical ways such as being tired or unable to make decisions, and that’s when people feel comfortable getting help.

“There’s less stigma, and they have a relationship with their primary care physician,” Roach Smith said.

Bert Nash Community Mental Health Center has two garden areas. by Kevin Anderson

An abundance of services

Bert Nash, which celebrates its 60th anniversary Sunday, is one of 26 community mental health centers in Kansas. It offers an array of outpatient mental health services for adults and children. They provide traditional services like couple’s therapy and medication management, and nontraditional services like case management and group therapy sessions.

“Teens are not all that interested in having some adults tell them what to do. So, we offer a group experience where kids can share with other kids the challenges that they have,” Roach Smith said. “A lot of times you can see a lot of validation in a situation like that.”

Bert Nash does a lot of community outreach. It provides education on topics such as holiday stress, job loss, managing depression and substance abuse. Two years ago, the center began offering Mental Health First Aid Training to help people know what to do in a crisis situation. It was one of the first Community Mental Health Organizations in the nation to do so.

Bert Nash also has mental health professionals available 24/7 to provide emergency care.

“We believe strongly that mental health is fundamental to health in general,” Roach Smith said.

Cindy Naff, left, and Thaddeus Warren are case managers at Bert Nash Community Mental Health Center. They visited with health reporter Karrey Britt, not pictured, about their jobs Friday, July 2, 2010, in their office. They said they enjoyed their jobs because every day is different and most of their work is done in the community. by Kevin Anderson

George Wanke, left, visits with Linda Davis on Friday, July 2, 2010, in the hallway at Bert Nash Community Mental Health Center, 200 Maine. Wanke is team leader for Integrated Dual Diagnosis Treatment, and Davis is a team leader for Community Support Services. by Kevin Anderson

Andy Conboy describes his job as a peer support specialist at Bert Nash Community Mental Health Center. by Kevin Anderson

The second floor of Bert Nash Community Mental Health Center is home to Child and Family Services. The walls are adorned with decorations made by their young clients. by Kevin Anderson

Bert Nash Community Mental Health Center, which is located in the Community Health Facility, 200 Maine, celebrated its 60th anniversary in 2010. The second-floor mural "Life Changes" by Van Go Mobile Arts Inc. was dedicated in 2002. Van Go is an arts-based social service agency that serves high-need and under-served youth. by Kevin Anderson

Making the first phone call to seek help is the biggest hurdle for most people.

“As Americans, we really are pretty self sufficient and we like to think of ourselves as being able to handle anything,” she said.

Longtime Lawrence residents Doug and LaDonna Stephens were among them. They adopted three sons when they were infants. The youngest, Zach, now 18, has developmental and physical disabilities that began about age 2.

Zach’s special needs escalated in grade school.

“We really were kind of at the end of our rope in terms of just the stress and the strain with all of the disabilities he had, and caring for him. It was taking a toll on my other two sons and our family,” Doug Stephens said.

His son’s primary diagnosis is atypical autism asperberger’s syndrome, but he also has epilepsy, Tourette syndrome and attention deficit hyperactivity disorder.

“We would get services here and there, but we were really looking for somebody to provide us with some comprehensive services,” Stephens said. “We needed a team. We needed someone, like Bert Nash, who could really look at the whole picture.”

Life-saving services

A referral to Bert Nash from a health professional outside the Lawrence community was the answer to the Stephenses’ prayers.

They participated in family counseling, and all of the boys received various services, especially Zach.

Bert Nash case manager Rhonda Stubbs has helped Zach with school, social skills, and life skills. He is finishing his education at a private school in Kansas City, and Stubbs is helping him apply for jobs. Zach’s condition has improved since grade school.

“They have been very helpful for us for many years,” he said.

Doug Stephens is one of 13 people who serves on the board of directors. He has become an advocate for mental health because he knows about the stigma.

“It’s a thing that families often are reluctant to want to admit, and if they do, there’s a tendency to keep that quiet,” he said. “That needs to change.”

Mariah Riling, 21, is a part-time psychosocial worker at Bert Nash Community Mental Health Center. She received services at Bert Nash as a teenager.

Lawrence resident Mariah Riling, 21, credits Bert Nash for giving her the coping skills to survive.

At age 17, Riling had tried to commit suicide three times and was hospitalized twice. She took an overdose of pills all three times, and tried to cut her wrist once.

She was referred to Bert Nash after her last suicide attempt, which left her in the hospital for one week.

“I was reluctant to go at first,” she said. “But, I had hit rock bottom to the point where I wanted to get better, and then Bert Nash was there to pick me up and help me with that process.”

She entered the Dialectical Behavioral Therapy program, and received one-one-one counseling along with group therapy over the course of a summer. She attended the group therapy with her mother, and Riley said it brought them closer.

“I wouldn’t have been able to get past it without help. I don’t even know if I would be here today,” Riling said. “I still use the skills that I learned to function daily.”

After graduating from high school, she joined AmeriCorps and went to California to work for the American Red Cross Relief Program. She worked with people who were displaced by wildfires.

While there, she decided to pursue a career in which she could help others.

She returned to Lawrence and Bert Nash, where she works part-time as a psychosocial worker while pursuing a psychology degree at Kansas University. She helps people with housing issues.

In January, she stopped taking medications. Riling said she is able to recognize the signs of depression and seek help.

In high school, Riling said she didn’t talk about her mental disorder. Now, her perspective has changed. She knows she is not alone.

“I don’t like the stigma that’s involved with people who have a mental health issue,” she said. “It can happen to anyone. I was a kid that people thought smiled all of the time, and I looked happy. I had good parental support and good siblings. People didn’t know that I was struggling with a mental illness, but I was.”

TOP DIAGNOSES

Bert Nash Community Mental Health Center, 200 Maine St., is a nonprofit community mental health organization that offers outpatient, research-based services for Douglas County residents.

To make an appointment or for more information, call 843-9192. It’s also the number for emergency services which are provided 24/7.

The center’s top diagnoses so far this year:

1. Major depressive disorder (recurrent, moderate), 87.

2. Depressive disorder (not otherwise specified or NOS), 85.

3. Anxiety disorder (NOS), 63.

4. Mood disorder (NOS), 62.

5. Dysthymic disorder, 50. It’s a chronic type of depression in which a person’s moods are low.

6. Adjustment disorder with mixed anxiety and depressed mood, 50.

7. Post-traumatic stress disorder, 46.

8. Adjustment disorder with depressed mood, 45.

9. Generalized anxiety disorder, 43.

10. Major depressive disorder, recurrent, severe without psychotic features, 40.

Founded in 1950, Bert Nash Community Mental Health Center was created in memory of Dr. Bert Nash, a KU educational psychologist and community leader dedicated to improving the health of Kansas children. He died in 1947 at age 48. by Kevin Anderson

DECADES OF GROWTH

Bert Nash Community Mental Health Center will mark its 60th anniversary on July 5. Here’s a look at the changes and growth:

1950s

• On July 5, 1950, Bert Nash Clinic opened inside Lawrence Memorial Hospital.

• During the first six months of operation, its budget was $7,280. It served 131 clients with a full-time psychiatric social worker and a psychiatrist and psychologist who worked one half-day a week.

• In 1959, it moved to the Jennie Watt house at 342 Mo. because it needed more space.

1960s

• In 1960, it had a budget of $23,147. It served 298 client with a full-time psychiatrist, social worker and secretary, and a part-time psychologist.

• In 1961, its name was changed to Lawrence-Douglas County Mental Health Center to reflect that it was more than a clinic.

• In 1965, the name was changed to Bert Nash Mental Health Center.

1970s

• In 1970, it had a budget of $67,443 and six full-time employees. The center served 378 clients.

• In 1970, it was incorporated as a non-profit organization which made new funding available. The name was changed to Bert Nash Community Mental Health Center.

• In 1973, a 24-hour answering service was initiated.

1980s

• In 1980, the clinic’s administrative offices and child and family services were moved to 336 Mo.

• In 1980, The Endowment Trust Fund was established.

• In 1981, it had a budget of $608,150. A total of 20 employees that served 698 clients.

1990s

• In 1990, the clinic had 56 employees and 2,021 clients. Its budget was $1.8 million.

• In 1999, the clinic moved to its current location inside the Community Health Facility at 200 Maine.

2000s

• In 2000, the clinic had a budget of $5.7 million, 3,879 clients and 144 employees.

• In 2000, it marked its 50th anniversary with a two-day summit: Building a Better Community.

• In 2002, the second-floor mural “Life Changes” by Van Go Mobile Arts Inc. was dedicated. Van Go is an arts-based social service agency that serves high-need and under-served youth.

• In 2005, Nancy Shontz Educational Series was established to provide continuing education for the center and community.

• In 2009, the clinic served 5,915 people.

2010

• On July 1, the clinic had 180 employees and a budget of $10.1 million.

• Oct. 9, it will celebrate its 60th anniversary with the Bert Nash Dash and Bash, a race and downtown block party.

Cindy Hart is development director at Bert Nash Community Mental Health Center. She is helping organize the Bert Nash Dash & Bash in October to commemorate the center's 60th anniversary. by Kevin Anderson

Nash Dash & Bash logo

COMMUNITY CELEBRATON

Bert Nash Community Mental Health Center is marking its 60th anniversary Oct. 9 with the “Bert Nash Dash and Bash” in downtown Lawrence.

The event begins at 4 p.m. with the Nash Dash, a 5k and 10K race, that starts and ends at Seventh and Massachusetts streets.

Besides the race, there will be live music, street entertainment and children’s activities in the 600 block of Massachusetts that will continue until about 11 p.m. Food and beverages will be provided by Lawrence establishments.

The event is free and open to the public. Proceeds from the food and vending at the event will benefit the Bert Nash Endowment.

If you are interested in sponsorship or volunteer opportunities for the event, contact Cindy Hart at chart@bertnash.org.

For more information, visit www.bertnashdashbash.org.