Parents are often told by their pediatricians that they shouldn’t worry. Here's what to do when your child doesn't receive an autism diagnosis ... but should.
Tamara Snyder didn’t believe the pediatrician. Yes, she liked being told that her three-year-old was “perfectly fine.” That diagnosis, however, didn’t feel right. She knew something was off.
Her son had several developmental delays. Other three-year-olds at the daycare center were talking, had good eye contact, and were keeping pace with their peers. Her son was lagging behind.
It was the head of the daycare center that told her that her son, Jayden, may be on the autism spectrum. “My pediatrician missed it completely,” she said. “The daycare director suggested that I get my child tested even though my child’s pediatrician told me not to worry. She told me that I should get a second opinion. She also suggested that I contact my local school district and talk to a child study team member.”
Synder enrolled her son in a pre-K program in her town. He received speech, occupational, and physical therapies, and sensory skills. “Something just gnawed at my gut,” she said. “As a parent, you know best when something with your child isn’t right. So many physicians miss it and dismiss it.”
Many parents of children with autism spectrum disorder agree. Several members of a private Facebook group for parents of children with special needs and numerous parents at schools across the country share similar stories. My own son, who has Asperger syndrome, wasn’t diagnosed until he was in preschool. His teachers called it to my attention. I always knew something was wrong, and I was told to throw away books on developmental milestones. The pediatricians and specialists kept on telling me that my son was fine.
Another parent I spoke to was told by her son’s doctor to “get off the internet.” It’s true that we can work ourselves into a frenzy when looking up facts. If your child has three of four symptoms, it doesn’t mean he has the disability.
“Presently we don’t have a medical test that can diagnose autism,” said Lisa Goring, executive vice president of Programs and Services at Autism Speaks. “We encourage parents to trust their instincts and seek out a doctor who will listen and refer them to a specialist.”
If you think something is wrong and your child’s pediatrician won't address an autism diagnosis, get a second opinion. Autism Speaks has information on how to get the services your child needs. Goring recommends making an appointment with a pediatric neurologist or developmental pediatrician. These doctors diagnose and treat a variety of conditions, including children with autism. They look for sensory and behavioral issues associated with autism. She recommends the centers in the Autism Speaks Autism Treatment Network.
Knowing your child has autism obviously opens up a world of services before and while attending school. Having a diagnosis makes sure your child will get special education services in school. In addition, Goring says the Individuals with Disabilities Education Act entitles all children to an appropriate public education that meets his or her needs. “That includes children with various disabilities, including autism,” she said. “They are entitled to early intervention services and special education.”
“We know the earlier the diagnosis means your child will get services sooner, and that equals a better outcome,” Goring said.
Autism Speaks has a response team to answer questions about getting the services your child needs. Once your child is in school, you can talk to the special education department in your district to make sure that your child is getting the proper services. Most school districts have websites with links to their special education departments.
If you believe that your child’s school doesn’t have the appropriate services to suit your child’s educational needs, look to an out-of-district special needs school that has programs tailored to your child’s disability.
You can start by talking to the special education department director in your school district. If you’re not getting answers, talk to parents of other special needs children who attend out-of-district schools for children with special needs.
It will take a bit of time and research to find the right school for your special needs child. Whether you are seeking medical services or educational ones, the bottom line is to be persistent and advocate for your child.
The good news is that specialists exist to help you get the right autism diagnosis.
April 03, 2018
Christopher Nystuen, MD, MBA