Sara Westhead suspected her son Jonathan was autistic as a toddler, but it was years before doctors confirmed her diagnosis.
Because he did not present with classic autism, it made the disorder more difficult to detect.
“When some people hear autism they think of someone running in circles, flapping their hands,” the 41-year-old said. “That is not my son. He was functioning in class.”
Jonny was 8 before she and her husband Andrew were told he had high-functioning autism, with sensory challenges.
He was fortunate. Diagnosis can come as late as 10 for people who fall where he does on the spectrum because they can speak, read, write and handle basic skills much like everyone else.
“He managed to get through primary school, but middle school was a whole different world,” said Mrs Westhead, a librarian at Whitney Institute Middle School.
“He was complaining and crying about school by October. And by January, there were days when he flat out refused to go.
“He was just too strong for me to force him into the car. How does one make an 11-year-old go to school?”
Mrs Westhead shared her son’s experience in an effort to bring greater awareness to the developmental disorder.
“Jonny, now 11, loves art, animals and video games and has taught himself to do computer animation,” she said. “He could be the next George Lucas. He could be a veterinarian. He has so much talent.”
Her son also experiences sensory overload quickly, has difficulty organising himself and is prone to meltdowns when things get too much for him.
Sometimes just seeing his mother pull his school uniform out of the closet would start Jonny screaming and crying.
And while some of his teachers understood autism, others did not.
“Some of them said he was doing it on purpose and it was a discipline issue,” said Mrs Westhead. “I think Jonny picked up their negative energy.
“Meltdowns are essentially issues related to a medical/developmental condition and should not be equated with temper tantrums. Tantrums are children misbehaving for attention or to get what they want; meltdowns occur when children can no longer cope and have no idea how to release/communicate their emotional frustration. They are no longer in control.
“It is extremely important that that differentiation be made, because it worsens the stereotype. Teachers think children are misbehaving when in fact they are not in control.”
The Westheads finally conceded that mainstream school was not going to work for their son. He began studies with Liberty University Online Academy last month.
“It was not healthy for him to be that anxious and stressed,” said Mrs Westhead. “He didn’t want to ever leave his room.” The online classes are geared to his pace and she is able to help when she gets home from work, and on the weekends.
Jonny’s challenges were evident as a toddler. One of the flags was his speech, which didn’t develop in line with that of other children his age.
“He wasn’t like everyone else,” his mother said. “He liked to line up his toys as he played. If it had wheels he loved it.
“He was fanatical about Thomas the Tank Engine for several years. He would do something for a long period of time.
“Questions would start rising in our heads, but then he’d stop doing the behaviour.”
She was almost relieved when they finally got the diagnosis they suspected.
Mrs Westhead said some parents of children with learning challenges are afraid of “labelling” them.
“They don’t want people to negatively stereotype their children — and that may happen,” she said. “But the benefits of the label outweigh the negatives.
“The benefit is that your child gets the help they need. I have no problem saying my child has autism.”
Mrs Westhead would like it to be mandatory that all school staff members are trained to cope with autistic students.
“That includes secretaries, custodians, anyone who works in the system,” she said. “I think classroom teachers should have a higher level of training.
“It doesn’t have to be to the level that an autism classroom teacher would have, but it’s about giving them some of those tools.
“They need to understand how to reduce sensory overload in the classroom.”
Her advice to parents who fear something is wrong with their child is to seek help, quickly.
“If your child broke his leg you wouldn’t wait six months to see if it healed,” she said. “If you suspect something, it’s better to rule it out.
“It may not be what you think it is. See your paediatrician or call Child & Adolescent Services. They will help you.”