Parents of autistic children make tough choices

Maneuvering through the educational system to find the best services for a child with autism can be frustrating. But parents are encouraged to stay in the fight.

April is Autism Awareness Month. Autism spectrum disorder and autism are both general terms for group complex disorders of brain development, according to the Autism Speaks website.

Signs and symptoms emerge between 2 and 3 years of age.

With different schools in a school district, the experience of securing the best place for a child to receive special services is also different. Every experience for parents having a child with autism is not the same.

“Typically, the parent can initiate that process at any time if they have concerns or if the students are having problems,” said social worker Joy Naquin of St. Mary Parish Schools.

Naquin evaluates students for special education.

Having a medical diagnosis of autism does not automatically mean that a student will need special services in school, Naquin said.

“We have some kids who are very high functioning with autism,” Naquin said. “They have some social difficulties or some communication difficulties. But they may be able to go through a regular education curriculum.”

Once students have been identified to receive services in school, an individual education plan is created.

“It’s very individualized,” Naquin said.

Some of the services provided for students with autism are special instruction, speech therapy, occupational therapy and physical therapy. Depending on the student’s need, services can be combined.

Students may need assistance from a special education teacher or a paraprofessional to complete assignments and simply get through the day.

Another student may be able to complete their work independently, Naquin said.

“That’s one thing that’s so frustrating, I guess, with autism is that they’re all so different,” Naquin said. “You know what works with one student will not necessarily work with the next student.

“And when I say frustrating, it can be frustrating for teachers. Because you get one student and say, ‘oh, I figured that out’ and then you get another kid with autism and things are totally different.”

Dawn and David Spinella had to fight to ensure their child’s needs were met in school.

Their son Tyler, 18, was diagnosed with autism at age two. At the time of Tyler’s diagnosis, one in 250 children was identified as having autism.

He qualified for a program called Early Steps. The program provided speech services at home. And when he turned three he officially started going to preschool.

The services continued in the school, and he still has assistance at 18 in high school.

“He needed major support and still does,” Dawn Spinella said. “My son also has seizures so he can’t be left alone.”

Tyler has a one-on-one paraprofessional assisting him throughout the school day, which not all children with autism do. But because he has other health needs, he qualifies for the assistance.

“We had to fight for it,” Spinella said, “but he got it.”

The Spinellas had to show documentation that he had seizures and that they had a health plan in place.

“He has no fear or knows no danger,” Spinella said. “So, he always has to have someone with him. …

“He may only need it in the academic setting or playgroup setting where they just coach him and say this is the appropriate thing to do and not go steal some toy or something.”

Tyler attended school in Assumption Parish for his primary years. Then he went to Morgan City Junior High in fourth grade because his dad taught special education there.

Tyler returned to Assumption when he reached high school because its schools offered a better special education program that met his needs, Spinella said.

“I’m not saying St. Mary Parish doesn’t have a good special education program,” Spinella said. “His needs were unique and Assumption Parish had a better fit.”

Parents still have similar struggles as the Spinelli family.

“Some districts are better than others, or some schools, should I say, within the different districts,” Spinella said. “They have a school in Lafourche parish that goes above and beyond.

“But then you may have a school 10 miles down the road in the same parish that you have to fight tooth and nail to get everything you need.

“It depends on how each school handles it to determine whether there’s a fight or if everyone is on the same page. It depends on the teacher and administration you get,” Spinella said.