By Lucretia Hughes Klucken
Families seeking autism services are encountering a painful reality: Even after a child receives a diagnosis, the help that family needs may be trapped behind a waiting list.
Addie Snell recently described learning about the “immense and immediate need” for children with autism to receive appropriate interventions. After discovering that families were waiting for services, Snell announced that she would step into the role of a registered behavior technician.
“But so many more of us are needed,” Snell wrote.
She is right.
A diagnosis may give parents an explanation for the communication, sensory, social or behavioral challenges their child is experiencing. It does not guarantee that qualified professionals will be available to help.
The Centers for Disease Control and Prevention estimates that approximately 1 in 31 8-year-old children has been identified with autism spectrum disorder. Autism occurs in every racial, ethnic and socioeconomic group. Centers for Disease Control and Prevention
As identification has increased, so has the need for qualified professionals who can provide individualized services. Those professionals may include behavior analysts, registered behavior technicians, speech-language pathologists, occupational therapists, psychologists, educators and medical providers.
An RBT is a paraprofessional certified to assist with behavior-analytic services. RBTs work under the direction and close supervision of qualified behavior analysts. They may help children strengthen communication, social, learning and daily living skills according to an individualized treatment plan.
The Behavior Analyst Certification Board reported more than 260,000 RBT certificants nationwide as of July 1. Even with that growing workforce, families in many communities continue to face delays, particularly in rural and underserved areas. Behavior Analyst Certification Board
Numbers alone do not tell the entire story. A certified professional may not live near the family, accept the child’s insurance, have an available appointment or provide the particular service that child needs.
That is how a family can live in a country with hundreds of thousands of certified technicians and still be told to wait.
A waiting list is not intervention.
While a child waits, parents may struggle to understand challenging behavior, schools may lack sufficient support and opportunities for building important skills may be delayed. Families can become exhausted while calling provider after provider, completing repeated paperwork and fighting insurance denials.
No two autistic children are the same. Some require substantial support with communication, safety and daily activities. Others may need more limited or different assistance. Every decision should be based on the child’s individual strengths, needs and family circumstances—not a one-size-fits-all program.
Applied behavior analysis is one option used by many families, but it is not the only form of support. Treatment decisions should involve parents, qualified professionals and, whenever possible, the autistic individual. Services must be ethical, respectful and focused on meaningful skills and quality of life.
The goal should never be to erase a child’s personality or force harmless differences to disappear. The goal should be to help that child communicate, learn, develop independence and live as safely and fully as possible.
America must do more than raise awareness. Awareness without access leaves parents holding a diagnosis but still searching for help.
States, insurers and providers should examine what is creating the delays. That includes reimbursement rates, training costs, staff turnover, supervision requirements, geographic shortages and administrative barriers that consume time families do not have.
Schools and health systems should also improve coordination so parents are not forced to navigate every part of the process alone. Rural communities need particular attention because a shortage of one specialist can leave families traveling long distances or waiting months for care.
Snell’s decision to enter the field is an example of how people can respond to a need in their own communities. One person cannot eliminate a nationwide shortage, but one trained and compassionate professional can make a tremendous difference for the children and families placed in that person’s care.
We need more people willing to answer that call.
Children with autism do not need pity. They need respect, opportunity and access to appropriate support.
Their parents should not have to beg for a place in line.
When a child needs help developing the skills necessary to communicate, learn or remain safe, “we will call you when something opens” is not good enough.
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