Light it up blue
The numbers are unchanged from two years ago — one in 68 is the estimate of autism prevalence in children by the United States Center for Disease Control — a number that is high, but that is still a major shift in the past two decades. It was one in 99 children before that, one in 150 children before that, and one in every 2,500 children 20 years ago when Dr. Michelle Major began working with children with disabilities.
Dr. Major who serves as the clinical director of the Seahorse Institute, a non-profit organization that provides intensive research-based and data driven interventions for children, adolescents and adults with autism and other developmental delays (Down Syndrome, intellectual disabilities, language disorders and learning disabilities) says the higher incidence in part can be explained due to better identification and diagnostic assessment.
“The fact of the reality is that there are more children on the autism spectrum disorder [ASD],” said Dr. Major, a psychologist who specializes in the assessment and diagnosis of, as well as intervention for children with autism and low-incidence disabilities.
While Dr. Major says there are no statistics in The Bahamas on disabilities, she said at the Seahorse Institute she diagnoses children with autism at least once a week, and that on average at least three children walk into her office on a weekly basis presenting with autism spectrum disorder characteristics.
At Seahorse, their mission is a unique collaboration of parents, professionals and community members that provide a nurturing environment, and develop the full potential of each individual using research-based interventions and multidisciplinary approach addressing individual needs.
As far as the autism research is concerned, she said they are no further ahead in understanding the cause of the disorder than they were in the past few years.
“What we do know is that we are continuously overwhelmed with the fact that autism continues to increase despite all the awareness and understanding out there, and that’s truly because we don’t really know the cause. We do know it has a genetic component, [and] that’s clearly based on the rate of children being born with autism,” said Dr. Major. “We do know it has a genetic component, [and] that there is an environmental factor that is causing that increase.”
On Saturday, the world went “blue” as people participated in light it up blue activities on World Autism Awareness Day in preparation for the month designated as Autism Awareness Month, during which the focus is on awareness and education of the disorder. At Seahorse Institute, they participated in a blue balloon launch.
The Seahorse Institute’s vision is for a world where individuals with special needs are valued participating members of their communities, and that all parents have access to high quality services, regardless of their ability to pay.
On the ASD spectrum the level of severity varies for each individual.
“There are individuals who have more mild symptoms, and then children who have more severe symptoms, however, the criteria is that each individual has the three areas of delay — behavior, communication and socialization,” said Dr. Major.
What to look for
No matter what, the doctor said parents should be cautious when their child has any delay related to communication or language.
“If a child isn’t meeting their developmental milestone, regarding speaking or asking for items, it’s important that [parents take them to] see their pediatrician immediately, as a language delay is the number one indicator that there might be more severe problems going on — whether it be autism or some other disability.”
Usually by the age of two, Dr. Major said children are talking and can speak in two to three word sentences minimally. She said if a child isn’t talking and asking for items verbally, that parents should be concerned.
According to the doctor in the fight to understand the disorder and to try to provide intervention to help to the children as early as possible, a huge issue is with “gatekeepers” — whether preschool teachers or even in some cases pediatricians — who adopt the wait philosophy and ascribe to the school of thought to give the children more time.
“Unfortunately, what we know now is that’s not the philosophy we should be taking on,” said Dr. Major who is considered an international expert and has presented and trained professionals around the world. “Once a child has even a mild delay in language, that child should be referred for further consultation to ensure that there are no other signs of any other neurodevelopmental delays going on for that individual.”
At the Seahorse Institute where they have several programs for individuals in the autism spectrum, Dr. Major says they are at the forefront of providing research-based programs for individuals in the autism spectrum. And that they have an excellent rate of providing remediation and actually treating children in the autism spectrum, getting children who were kicked out of regular school environments returned to the regular school environment after getting them to talk, to socialize, and keep up with the academic curriculum.
She estimates that at least 90-percent of the children at the Seahorse Institute are on the autism spectrum.
During autism awareness month, Dr. Major said it’s important that as a community people recognize that individuals with disabilities are able to make great gains in the areas that they do have delays. And that the public should realize that children with autism, with the correct intervention, are able to read and participate in society.
She encourages members of the public to support the children as well as the Seahorse Institute through volunteerism and financial donations. Dr. Major said members of the public also need to accept that sometimes children have behavioral problems, and that many times children don’t act out because they are rude or need a good “cut hip”. She also said many times children who are engaging in poor behaviors, don’t do so necessarily because they’re lazy or unmotivated, but essentially because there might be a reason why they can’t engage in the behavior that members of the public would want them to engage in.
“We have to be a little more empathetic about that and caring about our community members who may have delays,” said Dr. Major.