Veronica Bernard was worried for her son, Jacob, when he was 41⁄2 years old and hadn’t yet said the word “mom.” She knew he was smart — he knew colors and shapes and could point to things — but he had yet to put his thoughts into words.
A pediatrician suggested that Jacob be tested for autism. They got in to see a specialist after 21⁄2 months of waiting, but Bernard said the testing took weeks.
“There were several appointments that were dragged on, and some of them I had to reschedule because he wouldn’t cooperate or he didn’t want to sit down,” she said. “For a parent, that’s emotionally and mentally draining.”
To add to the stress, the final diagnosis sounded grim.
“She sat us down, and she said, ‘He will never hold a job, he will never have a normal relationship, he will probably barely graduate, he will never have normal friends, he will always live with you,’” Bernard said.
Jacob Bernard is now 15 years old. He talks all the time, attends school with his peers, works at a trampoline park, has plenty of friends and now has his first girlfriend. But that does not change how “grueling” the diagnostic process was, Veronica Bernard said.
“The reality from the Parent Center is families wait anywhere from 30 days to a year to get an official evaluation and diagnosis,” Hanna said.
Is there an easier way?
A new tool could more quickly and inexpensively give parents some idea of what their child might be experiencing.
A questionnaire published last week in the journal Developmental Medicine and Child Neurology might be able to tell parents if their child is autistic for free and within minutes. The questionnaire does not provide a diagnosis, but it could help parents “understand what’s going on in their child’s brain,” said Mindy Rivera, the mother of an autistic child.
The study that published the Autism Symptom Dimensions Questionnaire aimed to provide a free diagnostic measure for autism. The researchers acknowledge that those who take the survey should follow up with a doctor.
The ASDQ is composed of 39 questions, each asking how often a child exhibits a certain type of behavior on a scale of “never” to “very often.” These behaviors include how often the child may “use gestures to communicate,” “appear overly sensitive to loud noises” or “think or talk about the same topic over and over.”
The accuracy of the questionnaire ranges from 89.6% to 94.9%, depending on the severity of symptoms, the study says. It was tested on 1,467 children ages 2 to 17, 104 of whom were autistic.
Hanna expressed optimism in the survey.
“From the onset, it looks like this could be a useful tool, especially because families often have trouble getting screening,” she said.
Getting a clinical diagnosis takes time
When Rivera’s son was 2, he was also nonverbal. Despite her search for answers from pediatricians and speech therapists, the reason behind her son’s quietness remained a mystery for a year.
“It was frustrating to deal with this nonverbal kiddo who was desperately trying to tell us his needs, but it was this big cluster of ‘I don’t know what to do,’” Rivera said.
It took Rivera two specialists to get an official diagnosis for her son, which didn’t happen until he was 3 years old.
Hanna said that the diagnostic process also becomes more difficult as an autistic child gets older.
“A younger child will be prioritized over an older child, because early intervention is super important in terms of providing therapies and different treatment,” she said.
Both Rivera and Hanna said cost can be another hurdle to a diagnosis, as not all insurance covers screening.
Is an official diagnosis necessary?
Hanna said the new questionnaire might not be enough for parents to get the services their child may need.
“The big question would be if a parent utilizes this tool, and it looks like the child may be on the spectrum, then what?” she said. “They need a formal diagnosis to access a lot of services.”
Rivera had suspected her son was autistic long before his clinical diagnosis, but that diagnosis opened their family up to a world of benefits.
“Getting the diagnosis helped understand what was going on in his brain and how to help him and empathize … and then it helped because we were able to get into behavior therapy,” Rivera said. “With behavior therapy, that came along with parent training, and parent training literally saved our family.”
Bernard said a medical diagnosis is required for an autistic child to receive assistance through a Utah public school. But she also pointed to many resources parents and children can access without that.
“There’s so much information on the internet. There are so many books now,” Bernard said. “There are so many different parents advocating for so many different things if you just get on Instagram alone.”
Bernard also urged other parents with autistic children to go with their “parental gut instinct” when it comes to dealing with teachers and doctors.
“Keep fighting,” she said. “Keep fighting for your kids, because it’s going to amount to something someday, and then in turn, they’re going to learn how to fight too.”