Autism and Aspergers Awareness and Action

The Los Angeles Times recently published a four part series that discussed various issues related to Autism Spectrum Disorders. As part of our new Blog feature, we are embarking on further exploration of the content of this series and the questions it raises. This blog is intended to raise the issues and ask the questions that we hope to pursue through interactive discussion and community and client outreach. We will bring to our readers the insights, opinions, questions, and commentaries of various professionals and service providers, parents, individuals, and most importantly families who are and who continue to be affected by ASD.

Questions behind the influx of the ASD diagnoses in recent years have long been a topic of debate.  Part 1 of the Discovering Autism Series (full article available at http://www.latimes.com/news/local/autism/la-me-autism-day-one-html,0,1218038.htmlstory) suggested that differing opinions on diagnoses and symptomology between agencies and providers may lead to a delay in diagnosis, and can be confusing to families who are trying to determine the best steps to take towards treatment. We would appreciate input from the community regarding questions of diagnosis including how these factors may have affected you and other feedback about how diagnostic procedures can be improved.   We invite you to check out the resources FACT offers to help families and adults dealing with issues of diagnosis.

FACT's mission is to support families living with autism spectrum and other related issues. Therefore, we strongly believe that diagnosis is only the first step in developing a comprehensive long term support and treatment plan that may involve many different treatment modalities, but most importantly involves a supportive community of family and professionals and an appreciation for the uniqueness of each individual.  We invite you to check out our resources and to become a member of our community through joining our email list to be informed of the many family based activities we offer.

In Part 3 of the Times series (http://www.latimes.com/news/local/autism/la-me-autism-day-three-html,0,3438178.htmlstory), Applied Behavior Analysis (ABA) is discussed as the most recommended form of treatment for ASD. The article raises some interesting questions including why some children who receive ABA make significant improvements, while others show minimal changes?

Part of the explanation is that ABA is not a "one size fits all" form of therapy. To be effective as treatment, ABA strategies must be constantly analyzed, modified, and adapted to appropriately meet the needs of the individual receiving the treatment.

ABA is the application of research in behavior analysis to home, school and community settings. It covers a variety of different modalities and is often confused with discrete trial training, an approach which presents a fixed set of skills. ABA involves finding the function that a behavior serves and developing a plan to address it with more positive behavioral supports.

In "The World According to Cory: Through Linda's Eyes", Cory, a young man with autism is asked why some of  his friends  have made so much progress and others not.  His insightful answer is, "Face it, its just biology." Are some people on the spectrum genetically programmed to benefit from therapy or is it as one parent said "just plain luck?"

Additionally, treatments that only target symptoms at a behavioral level fail to address many of the deficits experienced by someone on the spectrum. At FACT, our therapists and clinicians believe that a comprehensive treatment plan is one that incorporates intervention strategies that are directed towards behavior, social skills, community integration, relationship development, as well as  teaching our clients to manage symptoms that often accompany autism, such as anxiety, ADHD, depression, and obsessive compulsive disorders. We also believe firmly in family support, including an individual's circle of support as part of the treatment plan. Long term involvement with families that is based on strength building and not on remediation of a disorder has led us to watch young people grow from severely challenged children to talented and funny adults.

We welcome feedback from the community as to what treatment modalities have facilitated your child's growth and how you have balanced these with the needs of your family.

Within the Times series, reporter Alan Zarembo writes that autism is diagnosed by its symptoms, which include "traits such as a lack of empathy". In both "The World According to Cory: Through Linda's Eyes" and Our Journey through High Functioning Autism and Asperger's A Roadmap, our families effectively disprove this misconception, along with others such as a lack of ability to understand conventional humor, a lack of desire to forge connections and relationships, and the inability to develop what is known as theory of mind.  We invite you to share stories of your children talents so that we can build a community of  knowledge to help dispel these misconceptions . We welcome videos (you tube link), pictures, stories, and your accounts.

The Times also highlighted how difficult it is for some consumers to get services and highlighted concerns about the budget shortfall and their effects on services.  We have a pressing opportunity to make our voices heard in Sacramento.

Your help is needed, please participate in the 2012 California Autism survey, the largest, most comprehensive survey of families and individuals with ASD in California history. It will gather perceptions and experiences relative to the education and services an individual with ASD receives across their entire lifespan in California. The information received will be used to assist the State of California in becoming more responsive to the needs of our community during this turbulent financial time. The survey takes about 15 minutes to complete and is located on a secure server to ensure that the information collected will remain confidential. We are asking that the survey be completed by January 31, 2012. The results of this survey will be published on our website at www.autismsocietyca.org by mid-March. Parents and individuals will be given the option of providing their email address so they may receive the results directly as well. Please share these links! Thank you

English: https://www.surveymonkey.com/s/VBYVNHT
Spanish: https://www.surveymonkey.com/s/LC3LRQZ

Finally, the series discusses agencies who advertise the ability to "cure" autism. We find this to be a double-edged sword. While we understand families' yearning for their children to be accepted, to be able to participate in all of the experiences that come naturally to neurotypical children, and to be able to function independently as adults, the concept of a cure means that the person would no longer be who they are. Over the many years we have had the pleasure of taking this journey with families we have seen an interesting pattern.  At diagnosis, families are looking for answers and would happily embrace a "cure."  However, for those diagnosed at later ages this is less the case.  And as the children in the first group grow and develop, parents often realize that there is no way to "cure" their child without losing the gifts and fundamentally changing the essence of who their children are. Most importantly the adults themselves do not want a cure. What they want is to be treated with respect, to have their talents celebrated, and their differences accommodated. Do any of us want any less for ourselves?

We invite you to respond to this blog with concerns, questions, and comments on the issues of diagnosis, treatment, and the possibility and advisability of a "cure."  If you would be willing to be contacted to discuss this with one of our graduate interns either in person or on the phone, please email christina.kantzavelos@factfamily.org.

Thank you in advance for helping us build a community of interest.  We look forward to sharing your responses in upcoming blogs

Linda Andron-Ostrow,LCSW
Executive Director