N.M. children can wait years for an autism diagnosis
Shortage of doctors in rural areas, state budget cuts are contributing factors
When 8-year-old Adam goes to a new place, it can be exciting, almost overwhelming.
A visit to a Mexican diner is more than enough to set him off. His head snaps left and right, attempting to take in the scene. His hands begin working, moving up and down excitedly until he is nearly lifting himself off the ground with his “flapping,” as his mother, Heather LeDoux, calls it.
“I have to tell him, ‘No flying at the table,’ ” LeDoux said. “What I’m trying to do is I’m trying to get him to be aware of how he feels in that moment.”
Adam was born with 10 fingers, 10 toes and a clean bill of health. But from the moment she took him home, LeDoux — a first-time mother living in her hometown of Questa — was certain something was different.
“I took Adam to the doctor probably every day for the first two weeks that we were home because he would just scream,” LeDoux said. “Out of a 24-hour day, Adam
screamed like almost 18 hours.”
The pediatrician said he had colic. But as the weeks and months passed, his mother couldn’t stop worrying. Adam was late for every milestone.
By the time he flashed his first smile — at 10 months — he should have started walking. When he finally started walking, he should have begun potty training.
LeDoux asked herself — and then her doctor — if Adam might have autism spectrum disorder.
“Oh, that’s just normal for kids Adam’s age; really, don’t worry about it,” LeDoux recalls the doctor assuring her without conducting an evaluation.
Throughout much of New Mexico, finding a doctor to treat something as simple as an earache can be difficult. In a small village like Questa, with a population of 2,000 and one health clinic, the specialized services required for a diagnosis of autism are hard to come by. Treatment is nonexistent.
Data from the U.S. Department of Health and Human Services show that with 104 health shortage areas in New Mexico, the state needs 261 additional doctors. Some counties have over 7,000 people for every primary care physician, which means providers can meet the needs of only a quarter of the population. Mental and behavioral health is even more of a challenge, with only 12 percent of the need being met.
And though the rate of autism has soared since 2007 — from 1 in 250 children to 1 in 59 — state funding for autism programs was cut by about half by Gov. Susana Martinez’s administration.
“We are looking at, right now in 2018, half of the money that we got in 2007,” said Gay Finlayson, education and outreach manager at the University of New Mexico’s Center for Development and Disability. “And autism has increased fourfold. There is just no way that we can meet need.”
The Autism Spectrum Evaluation Clinic at UNM is the primary provider of medical diagnoses for the state. Rural families must travel to Albuquerque to have their children evaluated for a medical diagnosis. Only after receiving one can parents begin to seek services through Medicaid.
The waiting period for evaluations has skyrocketed. According to the UNM clinic, which sees about eight children per week, the wait for a child under 6 is up to two years; for 6 and older, the wait is more than three years.
This is a disaster for families and children, since early intervention can help a child learn important social skills and overcome delays. Treatment can begin as soon as the child is diagnosed — which can and should be done by age 2, according to the U.S. Centers for Disease Control and Prevention. The American Academy of Pediatrics recommends all children be routinely screened for autism at ages 18 months and 24 months.
LeDoux said her repeated requests for a screening were ignored at every well-child visit throughout the first six years of Adam’s life.
“The first step is really for the parent to trust their intuition that something is going on, whether it is autism or not, and that their child has a right to be evaluated,” said Zoe Migel, social worker and founder of Bright Futures, an early intervention agency for autism in Santa Fe.
But whenever LeDoux raised her concerns, she was told to stop worrying: Her son’s development would catch up in good time.
Things, however, didn’t get any easier as Adam got older. In first grade, he still did not know his alphabet or how to count in sequence. “He didn’t actually remember, to tell you the truth, how to do those things,” LeDoux said.
He lagged behind his peers in social skills, rarely making eye contact and seemingly ignoring his teachers when they called his name. At recess, he avoided playing with the other children. He spent the time, instead, walking alone in laps around the playground, searching for insects.
By the time Alex turned 6, LeDoux had enough. She packed him and his younger brother in the car and moved to Taos, 30 miles down the road, in order to be close to better medical and educational services.
It meant leaving her hometown and starting life anew — finding a new job, a new house and a new school — with teachers who did not know Adam or his quirks.
“The whole reason that I moved was because I couldn’t get anybody from the Special Education Department [in Questa] to take me seriously,” she said. “I was like: ‘You know what? Something has got to change.’ ”
Things did change. Adam was tested at his school and identified as being on the autism spectrum. He got an Individualized Education Program, something that LeDoux had been requesting for years.
“It was like a validating moment at that point,” she said. “Because everything that I really have noticed and fought for is legitimate now. We have a reason why we’re having all of these problems.”
What LeDoux did not know at the time was that an educational assessment only covers educational autism services. Medical services require a medical diagnosis.
Now 8 years old, Adam still can’t read, but he avidly watches hours of insect videos. He can’t remember how to spell, but he can reel off a multitude of facts about his favorite bugs.
He attends a charter school called Taos Integrated School of the Arts, where he receives specialized educational services in a small hands-on learning environment with lots of individual instruction.
“He’s going through the normal things that 8-year-olds go through,” LeDoux said. “He’s trying to develop his sense of self in the world, and where his authority fits in with this 8-year-old body and his 8-year-old attitude.”
And along with 600 other New Mexico children, he is still waiting for that medical diagnosis.
It was like a validating moment at that point,” when the school identified Adam as being on the autism spectrum. “Because everything that I really have noticed and fought for is legitimate now.” Heather LeDoux of Taos