Parents Struggle with what is Best for Their Children with Autism

Nov 03, 2011

The first case of autism was diagnosed nearly 70 years ago and it is estimated that 1.5 million children in the US have the disease. Until recently, there were not many resources that families could turn to for information and help, and they were left with a . Mothers are often the researchers and persistent advocates for their children: Where do I find the best resources?  How will my child get into a school with educators that understand the complexities of autism? 

Indeed, there are 200,000 high school students in America with autism who  will soon transition to adulthood, and their mothers and fathers both worry that  their children lack the skills to negotiate life’s everyday – and not-so-everyday - milestones. Finding jobs and living independently – a thoughtful and challenging experience for any young person, but especially so for a young person with autism.

Autism is a complex neurobiological disorder. It can manifest itself  in various ways -  ranging from a mild to aggressive form. It affects social interaction, language development, and often results in antisocial or repetitive behaviors. There is no known cure for autism, and it can take its toll on parents trying to manage work and family.

The New York Times chronicled the struggles of the Canha family. Justin Canha faced challenges every day with his autism. He wore ear plugs to block hallway noise and he was able to keep up in his classes. He walked with his classmates at graduation, yet Justin was not prepared to for adult life. The high school had a community-based instruction program where students are taught to live independently, including managing shopping and public transportation. Justin has a gift for drawing and was accepted for a two-day-a-week, unpaid internship. The high school program was able to help him find part-time work and eventually, he was hired to work in a bakery making cookies. Not all students with autism or other behavioral or learning disabilities are as lucky as Justin. The NYT article shows how parents must navigate an education labyrinth in order maximize their children’s success, potential and survival. Relocation to a different school may be the best option, but not all parents have the resources to do this.

When NFL quarterback Rodney Peete and actress Holly Robinson Peete’s son, RJ, was diagnosed with Parkinson’s Disease, they found that there were not many resources or information available for families. Holly and Rodney founded the HollyRod Foundation in 1997 to help families with Parkinson’s disease. They eventually expanded the scope of the organization to also help families living with autism. They are planning to open the “HollyRod4kids Compassionate Care Center for Autism,” a centralized location where families can go for support, guidance, treatment and hope.

The University of California at Davis MIND Institute (Medical Investigation of Neurodevelopmental Disorder) was started by six families whose lives were touched by autism.  The MIND is regarded as one of the world’s foremost centers for the research and treatment of neurodevelopmental disorders and is dedicated to finding: the cause(s), better treatments and ultimately a cure(s) for autism and other neurodevelopmental disorders.  They have brought together experts working on medical research with the goal to cure neurodevelopmental disorders and currently the MIND Includes 48 senior researchers &faculty, 86 research fellows; 38 major research projects; 270 employees and 160 volunteers.   They continue to develop educational and psychiatric methods that have shown great results with the children in the program.  They began with autism and have now included research for Tourette syndrome, fragile X syndrome, ADHD and chromosome 22q11.2 deletion syndrome. Utilizing UC Davis’s advance biomedical technology and research infrastructure, they already made great strides to help the one in twenty Americans with neurodevelopmental disorders.   

This year, Senate pro Tem Darrell Steinberg and Senator Noreen Evans authored landmark legislation requiring healthcare insurers to cover behavioral treatment for autism in California. The San Francisco Chronicle covered the challenges families have getting help from insurance.  These families worked with Senator Steinberg to get SB 946 passed and Governor Jerry Brown signed the legislation on October 9th. Now beginning July 1, 2012, medical assistance that has been out of the reach of many families will be available for children and young adults.

The sheer numbers of children and young adults diagnosed with autism has gotten the attention of the entertainment community. For the first time, a Broadway theatrical production has modified its format for an autistic audience. The producers of the stage version of “The Lion King” offered a special show sponsored by the Autism Theater Initiative, a non-profit organization that runs the TKTS discount ticket booths in New York City. The group turned down the volume and eliminated loud sounds and sudden changes in lighting. The show brought joy to children and families who could never have had this experience anywhere else. This latest example of how even Broadway producers are demonstrating an awareness of the challenges and needs of autistic children and their families, shows  that , more and more, there is the promise of a better life for autistic children.

Additional resources may be found on the following websites.

California Department of Developmental Services
California Department of Education
Autism Speaks
California State Senate Select Committee on Autism and Related Disorders