According to the Center for Diseases Control and Prevention , since 2010, 1 in 68 children in the U.S. has been diagnosed with Autism Spectrum Disorder, or ASD, a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. To our surprise, the largest increases from 2002 to 2008 were noted among Hispanic children, non-Hispanic black children, and children without co-occurring intellectual disability. Even more puzzling is the fact that boys have a 1 in 42 chance of being diagnosed with autism in the state of New Jersey alone. The Center for Diseases Control and Prevention tables of autism prevalence by state and ethnicity can be accessed here.
Although some Hispanic/Latino parents could attribute some early autism-like behavior to “malcrianzas” “or mis-behavior, therefore missing some early signs, a recent study by the journal of Pediatrics concluded that the main reason our community was seeing lower diagnosis rate was due to:
- Latino to white disparities in age at autism spectrum disorder (ASD) diagnosis may be modified by primary care pediatrician (PCP) practices and beliefs.
- Primary Care Physician’s believe that Latino parents are less knowledgeable about ASDs than white parents
- Lack of access to ASD specialists and appropriate Spanish language screening tools
Some children may exhibit signs of autism as early as one year old while others may start regressing around 18-24 months. At which point autistic children may start to lose vocabulary, avoid eye contact, engage in echolalia which is when a child repeats verbal information stated by others vs. initiating it, throw frequent tantrums/meltdowns over the slightest change in routine, have a penchant for repetitive behavior, have difficulty transitioning from activity to activity or stop eating a varied diet (only eats same textured foods). Often, if the child attends pre-school/daycare, care takers and teachers may alert parents of their children’s sudden change in social interaction with peers i.e. aggressiveness, lack of interest to play and eat or inability to follow simple circle time routines.
For us autism hit home this past July when our 33 month-old son, Julian, was diagnosed as highly functional “HFA”. Although we visited his pediatrician very often and answered most of the “age appropriate” questions the pediatrician was unable to catch any red flags. It was through his learning center, our own due dilligence and his pediatrician referral (upon our urging) to seek a neurodevelopmental evaluation that we got to the Institute for Child Development at Hackensack Medical Center in New Jersey.
The developmental pediatrician that diagnosed Julian recommended intensive Applied Behavioral Analysis therapy in a more specialized environment with the hope of allowing him immersion into regular classes in the future. The last few weeks have been difficult as we learn about individual specialized education plans, child team meetings, finding the best place for him to receive ABA, traveling back and forth, negotiating flex time at work as well as dealing with some people’s misconception of autism (especially within our immediate family). To add to our angst, some health care providers/employers do not include ABA therapy deeming it to be more an educational approach to autism rather than a therapeutic one. As a consequence parents are left to scramble by scrapping off info on sights such as Autism Speaks and reading up on how to best advocate for their children’s right from Wrightslaw. We consider ourselves lucky since one of our insurance companies covers twenty hours/week of ABA and the other covers occupational, developmental and speech therapies. However, we cannot help but think of how many children in our community are not even close to being diagnosed despite several state funded early intervention programs!
The challenges are many but obstacles are none to parents that, like us, are determined to get the best services and therapies our buck (and insurance coverage) can buy. So far Julian is beating some serious autism butt as his speech has improved and meltdowns have diminished. He’s a fighter!
We hope our blog serves to raise awareness, get parents whose children are showing autism-like behavior to see a developmental pediatrician and promote a better understanding of this life altering disorder.
Pa’lante Latino showcases current events in the arts, entertainment, politics, and culture as it affects our community. Above all, we are ferocious advocates of the contributions that Hispanics/Latinos have made to the United States and feature articles based on historical facts to reaffirm our relevance.Please feel free to email us at firstname.lastname@example.org.