Autism Registry: Scary Government Tracking or Helpful Research?
Some states have recently formed an autism registry. If you are not in a state that has such a registry, you may be wondering what this is, what it’s for, and if you should register should your state ever start something similar. Parents who are very protective of their children may be very wary at first—after all, a state registry that tracks who has autism, where they live, and documents information about the mothers and their children seems a little invasive and scary. However, there are some positive points to registering your children with autism and registering important information about your family.
Autism research is a very important and positive reason for adding your family to the registry. All of the information the researchers gather about autism, where it seems to be most highly concentrated, the age of both parents when they conceived a child that was later diagnosed with autism, etc., is kept confidential, but it helps determine if there are any common factors. The common factors can then steer researchers in a direction that has not been explored before, as they try to find a cure or a preventive measure and help reduce the frequency with which autism is discovered and diagnosed.
Another reason for registering is so that when there is a cure, a treatment or a preventive measure found, your family can be one of the first ones to hear about it. Researchers who compile the list of names and data can present their findings to you and your child to see if you would like to reverse the disorder (should it ever be possible), or if you would like to remain as you are.
Government planning for the future welfare and financial needs also relies on this collected data. Social Security Administration will have to fairly and accurately predict the number of group homes, nursing homes, special care attendants, disability benefit amounts per person, and life expectancy for healthcare for every autistic child in America. Since the current number of autistic children is growing at an unprecedented rate in human history, there is no data bank to assist the government with these tasks, at least not without the help of the willing and volunteering families and the state registries.
Currently, many states on the East and West coasts of the U.S. have autism registries. Some require that mandatory reporters who discover and diagnose children with autism register your child and your family without your permission. Other states give you the option, while letting you know that if you do volunteer your information, you may be offered more public assistance and referred to extra programs that can help you raise your special needs child.