Dr. Daniel Geschwind

Dr. Daniel Geschwind, a renowned autism scientist and researcher at UCLA, will be joined by Assemblymember Holly J. Mitchell representing California’s 54th District, Los Angeles County Supervisor and Board Chairman Mark Ridley-Thomas, and SNN president Areva Martin, Esq., among others, for a press conference and roundtable discussion to highlight Dr. Geschwind’s National Institutes of Health (NIH) $10 million grant project. Dr. Geschwind’s grant has opened the doors for his team at UCLA to research the genetic causes of autism in African-American children – a population that has been overlooked by autism researchers.

The group will be joined by other professionals in the autism and disability community on May 17 at 2 p.m. in the First 5 LA Multi-Purpose Room at 750 N. Alameda Street, across from Union Station, to discuss the impact Dr. Geschwind’s research will have on thousands of LA children and families living with autism. The event is free and open to the public.

“The first five years of a child’s life are critical,” says Kim Belshé executive director of First 5 LA. “It’s no secret that African American children with autism are less likely than their Caucasian peers to receive an early diagnosis. We know early intervention is crucial to helping an autistic child thrive. Dr. Geschwind’s research will further allow us to understand how this disorder impacts African American families and develop additional resources for these children.”

Areva Martin knows all too well the effects autism has on a child. Her son was diagnosed shortly before his second birthday. “As a mom I’m constantly gathering and researching as much information as possible about autism. As a professional, I’m committed to taking that knowledge and helping open doors for other families. Dr. Geschwind’s work will not only help Special Needs Network in our work to create resources for families dealing with autism but it will also help the medical community tailor treatments to ensure better outcomes.”

Belshé and Martin represent a much larger group of professionals committed to helping UCLA and Dr. Geschwind with the NIH research grant – a grant that is part of a collaborative network of other autism centers around the country, known as the Autism Centers of Excellence program. The network was created in 2007 to support coordinated research into the causes of autism spectrum disorders (ASD) and the discovery of new treatments.

ASDs are complex developmental disorders that affect how a person behaves, interacts with others, communicates and learns. There is no known cause or cure. Earlier this year, the Centers for Disease Control increased the statistic for autism from one in 88 children to one in 50, demonstrating a significant increase in the number of children and families impacted by the disorder.

Geschwind’s study will aim to recruit at least 600 African American families who have a child diagnosed with an ASD for genetic testing. Nearly all research on the genetics of autism has focused on subjects of European descent rather than those of African or other ancestries.

“It is critical to study different populations to understand if current genetic findings in ASD can be generalized to a broader population,” explains Geschwind.

Geschwind’s work will also include an evaluation of disparities in the diagnosis of autism and in access to care, topics that remain top of mind for Assemblymember Mitchell and LA County Supervisor Mark Ridley-Thomas.

“Improving our health care system, especially for underserved communities, requires that we make use of every available tool that research offers,” says Assemblymember Mitchell, who chairs California’s Legislative Black Caucus and serves as a member on California’s State Assembly committees on Budget, Health, Insurance and Public Safety. “Many in the African American community are wary of the uses to which genetic studies have been put in the past. This is an opportunity to undertake research in a culturally sensitive way, directing it toward finding helpful interventions that children with autism need.”

“With LA and UCLA being the hub for this significant NIH research initiative, I’m committed to pursuing collaborative efforts that will help ensure LA County supports Dr. Geschwind and his team,” says Chairman Ridley-Thomas. “His work aims to create new ways to diagnose children earlier and help improve the ways we treat autism. Having our county serve as the epicenter for this important initiative is a great honor. This research has the potential to help families across the country.”

Geschwind’s research will last for five years and will build on his earlier work identifying genetic variants associated with autism susceptibility.

Interviews and photos will be available at the Pink Carpet during arrival (1 p.m.), which takes place at the VIP Reception. During the high tea portion, seats for viewing and covering the event will be available for our media partners in the Gallery Balconies which overlooks the main ballroom.

During the fashion show, photographers/videographers are welcome to come to the press pit to cover. For day-of coordination of interviews, please contact Todd Hawkins at 213-300-9342 or todd@thetoddgroup.net.

View event information

As I mother, I desperately want to protect him. I want his struggles to go away. I don’t want the world to view him as being different or abnormal. I want him to be just like every other child, but the reality is that his disorder is here to stay. The reality is we live in the world of autism.

There is no cure. There are still so many unanswered questions. There is, however, hope — hope that with more advocacy, more research and more compassion for children with special needs, we can improve our knowledge and understanding of autism. Slowly, steadily, we are making progress, but we still have a long way to go to break down barriers and build up resources.

Once a year, society’s eyes and ears are opened to the world of autism as skyscrapers turn blue, mayors around the country proclaim awareness and organizations host a multitude of events in recognition of a disorder that at one time was completely misunderstood and swept under the rug.

Many advocates would say that once a day, week or month has been dedicated specifically to your cause, great strides are being made. I would agree but when national diagnosis rates continue to rise and underserved communities continue to struggle with access to affordable care, it’s even more important to remember that our attentiveness needs to be tuned in every day of the year, not just throughout the month of April.

Autism now impacts one in 50 children. And while recent reports from the Centers for Disease Control are good indications that our nation is becoming more attentive to autism spectrum disorders, there is still much ground to cover.

As the head of a leading autism advocacy organization and having worked with more than 30,000 families in just a few short years, I have witnessed first-hand the lack of attention to this developmental disability by healthcare providers, insurance companies and public officials.

It’s crucial that as a society, we realize that even as the rate of this developmental disorder rises, the rate at which minority children are ignored and pushed aside is even more disconcerting. Research continues to show that minority children are diagnosed nearly two years later than their Caucasian peers. While we may be unaware of a cure or definite causes, we do know that an early diagnosis and treatment can significantly improve a child’s outcomes and development progress.

The autism epidemic continues to take a toll on children and families across the U.S., especially families in underserved communities. It is time that we take action to ensure every child in need receives access to quality care and the life-long benefits of an early diagnosis and intervention. It’s time we took action throughout every month of the year. Let the sky remind us that autism awareness must be every day for even when it rains, the sky is still blue somewhere.

And while I recognize the struggles my son endures, I also realize that his diagnosis has allowed us to better understand ourselves. And, although as a parent I never want my child to suffer or struggle in life, I wouldn’t change him for the world. For every struggle he has, he also has an abundance of joys. He is mine. He is beautiful. He is autistic.

Originally Published on The Huffington Post.

“We have several families in our congregation that have autistic children and when we conversed with them, SNN was spoken very highly of and worthy of our donation,” says James Taylor, senior pastor of Heavenly Vision Church.

The church will match and donate all offerings raised that day to SNN as it leads the way in education, advocacy and public policy for children with developmental disabilities. The entire congregation will also be wearing blue in support autism awareness.

“We are grateful that Heavenly Vision Church approached us about being involved with this event,” says SNN President & Co-Founder Areva Martin, Esq.. “This will wrap up a series of important community events we’ve held throughout April.”

“We have spent the entire month of April addressing issues that families, particularly those in underserved communities, face on a daily basis when it comes to accessing quality healthcare and educational services for their children.”

What:

Faith-Based Day of Observance for Autism Awareness

When:

Heavenly Vision Church
243 West 85th Street
Los Angeles, CA 90003
11:00 AM

Free and Open to the Public

This is a high tea event that will feature a designer fashion show, silent handbag and shoe auction, President’s VIP Reception, and Women of Distinction awards presentation.

Lifetime Achievement Award:
Congresswoman Hilda Solis
Who Served as United States Secretary of Labor

Women of Distinction Award:
Anshu Batra, M.D., Pediatrician and Autism Expert
Delilah Lanoix-Harris, President & CEO, SMS Transportation
Tisha Campbell-Martin, Actress, Singer, and Autism Advocate
Candace Bond-McKeever, President & CEO, Strategic Solutions Group, Inc.

All proceeds from the event will benefit Special Needs Network’s Parent Advocacy Mentor Program (PAM) and Joe Patton Academy Camp (Camp JPAC) – the only free summer inclusion camp in South Los Angeles for kids with autism and related disabilities and their siblings.

Please visit www.pinkpump2013.eventbrite.com to purchase tickets. For advertising and sponsorship opportunities, contact Andres Elizalde at (213) 389-7100 or Andres@specialneedsnetwork.org

“Don’t forget to wear your pink pumps!”

Special Needs Network is leading a coalition of organizations including the Alliance of California Autism Organizations, Center for Autism and Related Disorders, Autism Deserves Equal Coverage, Friends of Children with Special Needs, the Autism Health Insurance Project, Autism Society of San Francisco, and Autism Speaks, in addition to hundreds of families traveling to Sacramento on April 17 to rally at the State Capitol in support of this legislative package. This package is being announced in April as part of Autism Awareness Month.

“As the author of these bills, I look forward to joining the numerous families, advocates and autism heroes to overcome the challenges of autism,” said Senator Darrell Steinberg in a statement. “All children in California should receive the appropriate early evaluation and intensive intervention for autism and other developmental disabilities in order to achieve their full potential and all of their dreams.”

“I am going to be there leading the way in this important fight for the future and welfare of California’s children and families.”

The legislative package increases access to care for the underserved, extends private insurance coverage of autism therapies and creates stronger accountability for reporting by state-run departments involved with serving the autism community.

“Currently the access to care and services is inadequate in underserved communities,” says Areva Martin, Esq., a mother of an autistic child and president of SNN. “Given that autism spectrum disorders are now more common than childhood cancer, juvenile diabetes, and pediatric AIDS combined, it is important that parents and caretakers are able to afford and secure vital services and therapies for their special needs children.”

Kristin Jacobson, Steering Committee Member of the Alliance also adds, “There is nothing more precious than our children and any service that provides care to them should be equitable and accessible to all communities.”

The main theme of the legislative package is to address issues of equity and diversity in the delivery of services to children with autism. The legislation is based on 19 recommendations from the Taskforce on Equity & Diversity for Regional Center Autism Services which spent over a year studying the disparity of services and spending in California.

“We have been focused on equality for special needs children for some time and this package will help advance that goal by bringing about equitable spending in autism services for children of all races” says Martin, also a co-chair of the Taskforce.

With these reforms, regional centers will be required to include within their annual performance report a cultural and linguistic competence plan that will improve the center’s cultural and linguistic competence through strategies, population and service assessments, staff trainings among other areas. The new laws will require DDS to provide quarterly updates regarding their progress in meeting the needs of under-served communities. New transparency measures will require that the data and reports be posted annually on the regional centers’ websites.

Data compiled in the reports will be used to improve issues of equity and diversity in regional center spending through recommendations based on one or more performance outcome measures.

Special Needs Network is charting a bus from Los Angeles to Sacramento for the rally and there are spaces available. You are invited join hundreds of advocates from the state and meet with elected officials to voice your support for the over 15 proposed bills for the 2013-2014 legislative session impacting the autism and developmental disabilities communities.

Bill topics will include: SB 946 (Autism Insurance Mandate Bill) extension, equity and diversity of regional center services, consumer safety, increased access, and many more!

SCHEDULE

8:30 am
Welcome Meeting in Committee Room 113 (1st Floor of State Capitol)
This is the gathering area for those participating in legislative meetings to receive briefing materials and meeting/team assignments.

9:00 am – 11:00 am
Legislative Meetings

11:00 am – 12:30 pm
Rally on West Steps of the State Capitol
Featuring special appearances by Senate President pro Tem Hon. Darrell Steinberg, Hon. Curren Price, Hon. Lou Correa, Hon. Ben Hueso, Hon. Marty Block, Hon. Holly Mitchell, and other elected officials and guests.

12:30 pm – 1:30 pm
No Host Lunch

1:30 pm to 4:00 pm
Assembly Budget Committee Hearing on Human Services Budget
This is your opportunity to join a movement that is changing the way kids and adults with disabilities receive important medical, education, housing and other services.

PLEASE NOTE

This is a 24-HOUR, overnight trip. We will have two pick-up stations in Los Angeles and in the San Fernando Valley at 10:30 pm and midnight TONIGHT (Tuesday, April 16).

For more details on the meeting location or to reserve your seat, please contact the office at 213-389-7100!

“Recently the Centers for Disease Control released an unsurprising report, announcing an increase in autism from one child in 88 to one in 50. While the report is a good indication that our nation is becoming more tuned in to autism spectrum disorders, there is still much ground to cover.

As the head of a leading autism advocacy organization, a mother of an autistic child, and having worked with more than 30,000 families in just a few short years, I have witnessed first-hand the lack of attention to this developmental disability by healthcare providers, insurance companies and public officials.

With April being autism awareness month, it’s important for one to realize that even as the rate of this developmental disorder rises, the rate at which minority children are ignored and pushed aside is even more disconcerting.

Research continues to show that minority children are diagnosed nearly two years later than their Caucasian peers. While we are unaware of a cure or definite causes, we do know that an early diagnosis and treatment can significantly improve a child’s outcomes and development progress.

The autism epidemic continues to take a toll on children and families across the U.S., especially families in underserved communities. It is time that we take action to ensure every child in need receives access to quality care and the life-long benefits of an early diagnosis and intervention.”

Supporting articles:
http://www.nytimes.com/2013/03/21/health/parental-study-shows-rise-in-autism-spectrum-cases.html
http://www.emaxhealth.com/1506/african-american-children-autism-may-not-get-needed-early-intervention