Sarasota Is Blue For Autism Awareness Day
Today is Autism Awareness Day and people are lighting up their social media accounts with a blue background to bring focus to this special group of individuals. Do you know someone who has autism? Chances are you do. In 2018, the CDC reported that approximately 1 in 59 children are diagnosed with autism. Let that sink in for a moment. If you are traveling on an airplane or shopping for groceries, in a classroom or pulling into a health clinic, you are likely to run across someone with autism. There are no boundaries through which autism does not cross, no socio-economic walls or impenetrable group that it doesn’t envelop.
To date, there are also no medical detections for autism, and no magic cure-alls. Parents scrutinize the milestones of their infants and toddlers with bated breath, trying to discern whether their child’s lack of interaction indicates shyness or something deeper. Although a diagnosis of autism can occur at age two, most diagnosis do not come until the child reaches the age of four, so for parents who are seeing signs, the time can be heartbreakingly slow. On average, a family will spend roughly $60,000 a year for the added care of a child with autism, including lost wages due to medical appointments and days spent at home when behaviors have escalated.
The truths for children with autism and their families are difficult. Approximately one third of those diagnosed will be non-verbal and the same percentage applies to those with intellectual disabilities. These children will have a tendency to run away from people and situations and many will exhibit self-injurious behaviors including head-banging, biting arms and scratching. Due to explosive behaviors which can include lashing out at others, families often navigate routine activities like grocery shopping or medical appointments with trepidation. Some simply forego these and similar tasks altogether as a family.
Though faced with incredible challenges, there is help for these families. To date, the only evidence-based treatment for autism is Applied Behavior Analysis (ABA). ABA can assist in increasing desirable behaviors while negating harmful or unwanted behaviors, creating a more harmonious environment for the family. ABA can increase communication for children diagnosed with autism and improve their academics and focus, even to the point the child may enter a typical classroom setting. Working on social skills can lead to more freedom for the families, who can begin to enjoy family outings.
Every day I have the privilege of working with children with autism. I have seen firsthand the tears of joy in a mother’s eyes as her child says hello to her, something so normal for most people. Little things like a hug or acknowledgment of a peer, enjoying a meal as a family or having a successful trip to Publix—activities most of us take for granted are huge victories for these families. ABA works in the lives of families who never imagined their child would be successfully potty-trained or write their name or ride a bike. What I love about ABA is that it meets the child right where they are. Whether it be newly-diagnosed toddlers or seven-year-olds with behavioral issues, ABA is very individualized and impactful. Of course, early-intervention is key for the child to have the greatest success.
Currently, an ongoing assault on families affected with autism is occurring, and the culprit is Medicaid. Recently, a letter went out from Medicaid informing families of upcoming changes regarding ABA and similar therapies. The agency will disburse “teams” to meet with families regarding treatments their child is receiving. Although unfamiliar with the family and/or child, these “teams” will then decide the best course for future treatments. Families are encouraged to take time off of work and somehow get their already over-scheduled doctors to sit in on these meetings. Other hoops through which the parents must jump include requirements for updated evaluations for some children, further stagnating a system overburdened by new children waiting for diagnosis. Some of these parents will wait for months to get an appointment with a Medicaid approved physician for these renewed diagnosis. Meanwhile ABA professionals have been told in the coming months the fees that they can charge will be drastically reduced, which will serve to further restrict services for these families.
Whether it be your neighbors, fellow church members, coworkers, or someone seated in your own living room, chances are you know and love someone with autism. They are sweet, spirited, helpful, often with a higher IQ than a typical person and gifted in ways in which we are only beginning to discover. They will not outgrow their diagnosis of autism, they will become adults who will outlive their primary caregivers and will need help from a system that is already turning their backs on them at a young age. The one evidence-based treatment that may alter their paths in a meaningful way is in jeopardy of being ripped from their hands. Individuals with autism need us, especially on Autism Awareness Day. Please consider contacting your local representatives or signing the attached petition and let your voices be heard on their behalf.
Photos courtesy of World Autism Awareness Day Facebook page.