When it’s time for an autistic child to start school, parents have a chance to work with teachers to tailor a program specifically to their child’s needs. But figuring out exactly what those needs are can be difficult.
“Every single child with autism is different and has different needs,” says Ellen Notbohm, author of Ten Things Every Child With Autism Wishes You Knew and Ten Things Your Student With Autism Wishes You Knew. “Every school is different; every parent is different.”
For most autistic children, school is a difficult place to navigate socially. They relate to others differently. Many traditional school activities like circle time and recess have no relevance to an autistic child. Speech delays and other communication challenges are also common.
In academics, some autistic children excel in one or more areas, while others cannot relate to the material or their teacher’s expectations. An autistic person has a brain that works and thinks differently, and children often need alternative forms of instruction and assessment.
Children are now diagnosed with autism as early as 18 months, giving parents time to educate themselves about a complex disorder that impacts everyone differently. For example, some children with autism have hyper-acute senses and can be rattled by noise, light, smells, and touch. Others are undersensitive, which sends them searching for sensation. Both issues can make it hard for a child to concentrate in school.
Notbohm, whose teenage son was identified with autism at age 3, advises parents to focus less on the autism label and more on their child’s needs. “The label can be the means to get the services,” Notbohm says. “But it’s more important that a parent be able to describe the child’s problem behaviors or characteristics.”
Here are some of Notbohm’s suggestions for forging a successful school-parent partnership:
Take the first step. Call the school district to find out the process for requesting an evaluation and an individualized education plan, also called an IEP. The IEP, which is required by federal law, is the document that will guide teachers as they work with your child. All school districts operate differently when it comes to the IEP process.
Focus on what you’re legally entitled to. By studying local, state, and federal laws, you will know going in what your district can do to help your child. “Don’t waste time arguing for services that are not indicated by the IEP,” Notbohm says.
Don’t make assumptions. Small schools can offer excellent services, and large schools can offer poor services. Schools in rural areas can be enlightened. Schools in suburban districts can be stuck in outdated methods. Get to know your child’s IEP team members, and keep an open mind. Sometimes teachers need to be educated about autism and are open to learning more if it means helping your child.
Bring up your child’s sensory needs. “Address sensory issues promptly,” Notbohm says. “If he can’t tolerate being in his own skin, how is he going to learn?” Notbohm likens the experience an autistic child has in a classroom to being on a roller coaster; it’s an intense assault on the senses. “In the middle of all that, a child is asked to focus on schoolwork,” she says.
Be optimistic. Stories of battles between parents and teachers over education for a special needs child are common, but there are many success stories. “We hear less about terrific and productive partnerships,” says Notbohm, who had just one contentious year in getting services for her son, who is now 17 and in a private school for different learners after many years in public schools.
Consider options. When you’re having a contentious experience with your child’s teacher or when you think your child needs more than the school will provide, look into private therapy, which might be covered by insurance. If you aren’t able to access services your child is entitled to, consider hiring an advocate or special education attorney to help you work with the school.
For reasons not fully understood, school districts everywhere have seen an increase in the cases of autism. This has, in some cases, made it easier for parents to access services. “When the numbers get to where you can’t ignore the characteristics of a brain that thinks differently, there’s more willingness to see it that way,” Notbohm says. The word “autism” wasn’t introduced to the English language until 1944, she notes. “We’ve still light years to go.”
By being your child’s first teacher and advocate, you can work with your school to create an education program that unlocks your autistic child’s potential.