Autistic young adults -- are we ready for them?
Autism is the fastest-growing developmental disability in the United States. Those born within the first big wave of diagnosed cases in the United States are now entering adulthood, and it has become a difficult and volatile future. Some will not go to college; others will not be able to get jobs. Many autistic adults will live with their parents for most of their lives and in some cases, only if they get the proper guidance and support, they may find a part-time job.
Thousands of Latinos are part of the generation of young autistic adults. They were diagnosed in the early 1990s. The lack of information, language barriers, and the limited resources available for Spanish-speaking parents makes these young autistic Latinos more prone to difficulties in their transition to adulthood and the potential for independence.
Our KVEA Telemundo Los Angeles audience is mainly non-English-speaking Hispanics. Due to the majority of these families not having proper support to overcome the challenges for their autistic adult children, they end up misinformed and without help or resources.
Our 2013 California Endowment Health Journalism project studied in-depth the dark reality, and some of our findings are very concerning. The Center for Disease Control and Prevention (CDC) explained that from 2002 to 2008 the biggest increase in children diagnosed with autism was among Hispanics -- a 110% increase.
Another big eye opener was the lack of services for autistic young adults available after graduating high school. We interviewed Professor Paul Shattuck Ph.D. from the University of Washington in St. Louis and his findings are overwhelming. Shattuck notes that approximately 50,000 young adults in the U.S. suffering from Autism Spectrum Disorder (ASD) turned 18 in 2013.
In a phone interview he commented about the lack of services offered to autistic young adults after graduating high school.
46.9% students with autism receive medical services during their high school years. This percentage decrease when they finish high school, at which only 23.5% are left with this service.
74.6 % of students with autism receive speech therapy during their high school years, which later decreases to only 9.1%, post high school.
Those numbers are more devastating among non-English-speaking families. Gloria Rodriguez from the organization Parents with Exceptional Kids, explained that over 90% of the families she works with do not speak English. She states that the majority of these families are afraid of law enforcement because of their immigrant status. Some of these parents strongly believe their autistic young adults born in the United States do not have rights.
We also interviewed Elizabeth Gomez regarding her 18-year-old son. She shared that the regional center where she lives is not helping her son with any programs. “We are abandoned; my son should have the same rights like any other human being in this world," relates Elizabeth Gomez.
This subject is very important for our audience because the majority of non-English-speaking Hispanics are looking for information and guidance in their native language. During our project we were able to connect with various organizations focused on helping Hispanics with autistic children. This project had the capacity of organizing meetings and accomplished a direct connection with dozens of families that are commonly faced with these challenges.
One of the most important lessons of this project was discovering help, finding the light at the end of the tunnel. We managed to find two organizations dedicated to improving the lives of these autistic young adults and their loved ones. These organizations are: Parents with Exceptional Kids and Wiley Speech and Language Center.
Parents with Exceptional Kids support parents of autistic children with many services, such designing an Individualized Education Plan (IEP) for special needs students. This plan helps parents to involve the entire family into the support structure created for the autistic family member. These services are available in Spanish and are privately held on a one-on-one basis. There is also a monthly support group, which we attended, witnessing the commitment of the participants.
Wiley Speech and Language Center has a program solely dedicated to integrating autistic young adults into society. It teaches them simple life routines like working, providing for themselves and independent living. The program places these autistic young adults in a classroom as their work environment. In these classrooms, autistic young adults care for younger children with autism. Many of these students respond favorably to the program. Some of the autistic young adults in this program expressed the possibility of predicting the behavior of the younger children with autism due to their previous experiences -- something that seems almost impossible for any expert. Sadly this program is one of the few dedicated to integrating these young adults with autism to our everyday lives.
One particular challenge in this project is that I have an autistic young adult at home, and it was difficult not to get distracted by my personal experience. My son is soon turning 22, and that is the age when an autistic person no longer qualifies to receive government-funded education -- among other services -- directly from the public school system. His level of autism is at a moderate stage, which is considered not severe enough to get services and participate in special programs. Also, his IQ is not at a level where he can reach adult independence. Because I am able to speak and understand English, I have better access to information and programs than those parents who cannot speak English. Because of the cultural barriers and immigrant status, many Latino parents live in fear and do not engage in any social services. The project was intense and the product was positive, yet cruel for thousands of families and their special-needs children that lack the access to programs that can change the way they live their lives.
The reaction from the community to our reporting was very positive. We managed to accomplish various workshops, reunions, and meetings with families and their autistic young adults. The two part story was aired on Telemundo, and also posted on the Telemundo website, NBC-Latino, Facebook, YouTube and Twitter.
Engaging our audience was a very important aspect of our project. This was accomplished through a strategy to connect to our Latino community. We skillfully communicated with our audience through social media and informed them about community programs created to support parents and autistic young adults.
Our project provided comprehensive information on how to deal with the issues facing us. However, we believe this project is not complete. We need to continue with the studies to close the gap between information and the families in need of this valuable information.
I appreciate your comments and support. Our work to improve the quality of life for young adult autistics is constant and it's possible thanks to all of you.
This article enlightened me on Autism. It is well researched and written. It has inspired me to do more research on the subject, which ultimately may get me involved in it.
I knew you were a great one the first time we spoke.
This story was comprehensive and very well done. It was also proactive and encouraging to families. Families are their child's best advocate and knowledge is power. Thank you for using your voice and your personal experience to reach so many. Thank you also for including our center in your story. Great reporting.