The Lost Ones

Santa Fe Reporter | March 23, 2005
On the warmest Saturday morning to grace the City Different in months, Walker Owens straddles a draft horse in the show barn of Santa Fe Horse Park. Outside of the barn, the road is dirt, the sky is amber and a coat is unnecessary, thanks to the imminent arrival of spring. Inside the barn, most wear

jackets, as the temperature is cooler in its

confines. The emotional climate, on the other hand, is harder to


As his ride progresses, 7-year-old Walker hugs one of the several attendants who

surround him and his horse. That moment passes and Walker shouts at the attendants to shut up. In another instance, Walker wraps his arms around his horse, just to whack it soon after. “You hit the horse,” Walker says. Only by “you” Walker means himself.

Pronoun confusion is common in children with Walker’s condition—autism spectrum

disorder. A term that encompasses a range of developmental disorders, ASD is a lifelong disability. Symptoms of the disorder include behavioral abnormalities and difficulty

socializing and communicating. In fact, communicating at all is a feat for many children with autism, which explains Walker’s onslaught of conflicting emotions while riding. Occasionally, during the ride, Walker’s horse began to trot. While the attendants thought Walker enjoyed trotting, the quickened pace frightened him, so he used tears, screams and slaps to communicate his fear.

Despite a few glitches, Walker expressed himself better during this ride than previous ones. “On his first ride [he’s had five], he got on and wanted to get off. He was very distracted,” says Jeanne Sharp, head of Santa Fe Equestars, the horse park’s therapeutic riding program. “He wasn’t trying to communicate as much with us. This week, he’s started to follow instructions. He tried to communicate.”

Therapeutic horseback riding is an alternative form of treatment for people with autism. In Santa Fe, it’s the only treatment Walker receives and one of few services available. Long waits for diagnosis and treatment are commonplace in New Mexico. There is a shortage of autism experts and only one central facility—in Albuquerque—that specializes in the disorder. Add in an absence of data regarding the number of autistic residents here and a scant amount of educators equipped to instruct autistic children, and it appears New Mexico is unprepared to address a disorder that ranks among the fastest-growing in the nation.

“It’s extremely difficult being a person with autism here,” Penny McMullen, a board member of the New Mexico Autism Society, says. “I know families who have left the state because they couldn’t get services. When children need help, the earlier the better.”

More and more children need help for autism, a disorder that is arguably rising in epidemic proportions. The Centers for Disease Control estimate that six in 1,000 American children have ASD, which marks a tenfold increase over the past decade. In New Mexico—according to the US Department of Education—incidences of autism rose in schools more than 1,000 percent between 1992 and 2000.

Controversy surrounds the seemingly steep increase in the disorder, with everything from immunizations to diet blamed. Because couples with an autistic child often have another one, the medical community believes autism is genetic. But George Davis, division director for child and adolescent psychiatry at the University of New Mexico, thinks that additional factors contribute to the development of the disorder. “If it was purely genetic, it wouldn’t have that kind of rise in prevalence, especially since [the majority of] autistic people don’t mate,” he says. “It has to be environmental toxins.” The fact that children in California are more prone to ASD supports this theory.

Davis’ suggestion that toxins are linked to autism also figures into the immunization argument. According to Cate McClain, director of the University of New Mexico’s Center for Development and Disability, mercury is found in certain vaccines. “We know that some forms of mercury are neurotoxic, and this form of

neurotoxin could cause autism,” she says. But McClain adds that population

studies that have compared vaccinated children to vaccine-free children reveal that autism occurs at the same rate in both groups, furthering the mystery as to autism’s catalyst.

What autism advocates and medical professionals both agree on is that the diagnostic criteria for autism has expanded and improved since 1943—the year child psychiatrist Leo Kanner wrote a report that identified the disorder in children. “We’re capturing more kids that we used to say had something else and calling them autistic,” McClain says.

Walker Owens was 2 1/2-years-old when specialists diagnosed him as autistic. He was lucky because detection of the disorder before the age of 3 increases an autistic child’s chances of developing language, socialization and other skills. However, with many parents not noticing symptoms of autism until a child is that age and a lack of autism specialists, early intervention may be elusive in New Mexico. “You don’t find individuals that are specializing in autism,” Loretta Hedrick, president of the New Mexico chapter of the Autism Society of America, says. “A lot of it is done by observation of the parents. A lot of it depends on insurance companies. It can be

frustrating for families.”

Hedrick also cites the mass departure of child psychiatrists from the state as

contributing to difficulties in obtaining diagnosis. To an extent, Davis agrees. “I

think lack of child psychiatrists is probably one of the impediments in getting a diagnosis,” he says.

Davis believes that the influx of managed care in New Mexico over the past decade is proportional to the exodus of psychiatrists from the state. “You have to get approval to see the kid. You can’t put him in the hospital without approval,” he says. “It’s really not about the money, it’s about the level of interference.”

Overall, Davis views a shortage of psychiatrists in New Mexico as part of a complex problem, rather than the defining factor. “Child psychiatrists aren’t the only ones who are seeing autistic kids,” he says. “Pediatricians and psychologists probably have as much or more expertise.” According to Davis, the problem is that making an autism diagnosis depends on how well a medical official knows a child, though practitioners familiar with a child may not be familiar enough with autism to recognize it as the source of abnormal behavior. Furthermore, even experts in autism may have a hard time making a diagnosis.

Albuquerque novelist Alisa Valdes Rodriguez has struggled to determine whether her 3-year-old son Alexander is autistic. Concerns about Alexander arose when his teacher noticed that he referred to himself in the second person and preferred to play by himself rather than with classmates. He also obsessed over sprinklers, Legos and foods of certain colors. Abnormal fixations sometimes signify autism. To be sure, Valdes Rodriguez took Alexander to the SouthWest Autism Network of UNM’s Center for Development and Disability. SWAN is considered the only clinic in New Mexico that can provide a multi-faceted autism diagnosis. In other words, at SWAN, an interdisciplinary team of health professionals gives a diagnosis instead of just one expert in a particular field.

“SWAN did a four-hour evaluation of [Alexander] in the late afternoon,” Valdes Rodriguez recalls, adding, “He didn’t have anything to eat.” Valdes Rodriguez believes that because her son grows restless in late day and was hungry, the SWAN staff was led to label him autistic. But a nagging feeling caused her to question the diagnosis. For example, she says Alexander is empathetic, a trait atypical of autistics. “He heard a kid crying and gave him a toy,” Valdes Rodriguez says. Desiring a second opinion, the author—whose first novel, The Dirty Girls Social Club, appeared on the New York Times bestseller list—used her resources to find out-of-state specialists for Alexander. Their diagnosis: “There’s no way he’s autistic.”

SWAN officials say that, because autism includes a spectrum of behaviors, making a diagnosis isn’t easy. “It’s not like we can do a blood test or an X-ray or even a psychological test that gives us the answer,” McClain says. “Two kids could have autism and have very different behavior.” To make an autism diagnosis, SWAN Director Pat Osbourn says the staff watches videos of likely children at home, considers the information such children’s caretakers provide concerning their behavior and have the children spend several hours with speech pathologists, child psychologists,

pediatricians and others.

According to SWAN, last year clinicians concluded that 60 percent of children screened did not have ASD. As Valdes Rodriguez’s case evidently indicates, at times, the inverse is true. “It doesn’t happen very

frequently but occasionally we’ll see a child at a young age and their history and behavior will fit all the

criteria for a child who does have autism, but later we feel that their behavior is not best described as ASD,” Osbourn says.

Armed with two diagnoses that Alexander was not autistic, Valdes Rodriguez returned to SouthWest Autism Network. “They told me they’d be happy to see him in one year,” Valdes Rodriguez says. “They didn’t apologize.” In all fairness, SWAN officials say they revisit children already screened for autism six months to a year later because they lack the resources to have follow-up checks as others wait for first-time testing.

While SWAN is distinct among New Mexico health providers for its expertise in autism, it also has the distinction for putting those seeking diagnosis on yearlong waiting lists. “The center as a whole is totally dependent on State grants and federal contracts, and we get reimbursed in very small amounts, so we don’t have the funds or clinic professionals to see very many kids per week,” Osbourn says. Additionally, because it’s uncertain how many New Mexico residents have autism, requesting funds is difficult. “Right now the numbers are all over the place. We really don’t know how many individuals have ASD,” Osbourn says. “We have approximately 1,100 children in our records, but that’s well below the national average. It’s very hard to plan programs funding if we don’t know what the numbers are.”

House Joint Memorial 32 aims to have the Legislative Health and Human Services Committee establish a system for tracking New Mexicans with autism. “We need a registry to know…what kind of impact autism will have on the education system, on the health system,” Hedrick says.

The memorial also seeks to provide the necessary services to autistic persons. By requesting that $500,000 be appropriated to UNM’s neurodevelopmental interdisciplinary diagnostic clinic, House Bill 625 had a similar purpose. Such an appropriation could have resulted in reduced waits at SWAN, allowing staff to provide more timely diagnoses to the queues of people in need. The bill never made it past committee.

When Santa Fean Penny McMullen was growing up in the Great Lakes region during the 1940s, doctors neither gave her an autism diagnosis nor screened her for the disorder. Nonetheless, she always felt different from her peers. Standing in front of her house she is dressed in casual cotton, her pageboy hair as blanched as the flurries that will fall days later. There are a series of placards blasting the Iraq war in her yard. As an adult in Santa Fe, she blends in, but, as a child, she stood out. She behaved in ways characteristic of autistic children, banging her head, rocking and not responding to her name. To top it off, she pulled her hair out and declined food and sleep. Doctors told her parents, “You just need to make your kid behave.” They also advised that “stubborn” but intelligent McMullen be force-fed.

Though McMullen disagreed with doctors’ assessments, she knew something was awry. “I’ve always had problems with people,” she says. “They tend to end up being angry with me because I’m not functioning the way they think I should.” In particular, McMullen failed to read body language, facial cues and lapsed into periods of not speaking. She would also forget people she met, causing them to think her rude during subsequent encounters. “Somebody could have been really nice to me, and then I don’t remember them,” she says.

In adulthood, McMullen joined the Sisters of Loretto. As a nun, she taught children with learning disabilities. While taking a workshop on the subject about 13 years ago, McMullen, now 63, says she felt the first stirrings that autism was responsible for her behavior. After a referral to a psychiatrist, McMullen received an autism diagnosis. “There was an explanation for the problems I had, that I wasn’t crazy.

I wasn’t a bad person,” she says.

Once diagnosed, McMullen set out to have the condition treated but was largely unsuccessful. “One reason I haven’t had much treatment is because I can’t find anybody in Santa Fe who understands high-functioning autism,” she says. “Last year I called around to 17 different therapists. They didn’t understand [the disorder], or they only worked with children.”

Auditory integration training is the only therapy McMullen has received thus far. Fluorescent lights, fragrances, colors and noises consistently overwhelm her, as they do others with autism. After the training, which she received in the mid-1990s, McMullen says, “It was wonderful. For one year I could manage in a restaurant.” McMullen had to leave Santa Fe to receive the training, though. In fact, she had to leave the state. The training was provided in Houston.

Walker Owens made just a 50-mile journey to obtain help for his ASD. Concerned he would not receive adequate services in Santa Fe schools, Walker’s maternal grandparents, also his legal guardians, moved to Albuquerque. “They seem to have more resources than perhaps what would be available here,” Carole Owens says. Owens is the paternal grandmother who takes Walker for horse rides during his weekend visits to Santa Fe. In Albuquerque, Walker is in a class with a handful of boys with developmental delays. “We repeated his kindergarten because we felt he really needed what’s considered special ed kindergarten,” Owens says. The family was particularly worried because Walker doesn’t speak interactively, take turns or share.

Via a team that includes two autism specialists, a speech therapist and a behavior management specialist, Albuquerque Public Schools addresses the needs of children such as Walker. While APS has had autism specialists for years, the aforementioned team was formed just this year, according to autism resource teacher Maryann Trott. “I think the district was sensitive to the number of people we have with autism and how complex the disability is,” Trott says of the team.

As Walker ages, APS will continue to have resources that address his stage of development. Loretta Hedrick’s autistic young adult son is enrolled in APS’ Access program. After students with autism and other disorders complete senior year of high school, they can enter Access. “We can help them with post-secondary

education, give them the help they need with social interaction, study skills,” Access head Paul Pino says.

In Santa Fe Public Schools, Walker may have been lost. SFPS hasn’t had an autism specialist in five years, according to Tricia Penn, director of special education in the district. Asked how SFPS will meet the needs of autistic students, Penn said the district is forming a task force next month to brainstorm programs and pinpoint the prevalence of autism in schools. “About 7 percent of our students in special education are identified as students with autism,” Penn says. “It used to be in 1968 that the prevalence of students with autism was less than 1 percent, so it’s on the rise.” If the belief that schools undercount autistic students is correct, the portion of autistic children is likely higher, making services imperative.

That schools throughout New Mexico lack personnel with autism expertise has not escaped State legislators. After hearing testimony about the dearth of educators with autism backgrounds, State Sen. Cynthia Nava, D-Doña Ana, introduced Senate Bill 124, which would have made a $200,000 appropriation to the Public Education Department to be used for professional development in autism. That bill also died.

“I hope that there’s some money funded to school personnel so that they can better deal with students and meet their needs,” Nava says. A former teacher, Nava worked with autistic children in El Paso. There, she says, educational resources for autistic students were “far superior” to those of New Mexico. Having heard about families moving to Albuquerque just to receive services, Maryann Trottt agrees that professional development is critical, even for APS teachers. “Teacher education would make a big difference,” she says. “Many teachers now have a child with autism…and have no idea how to go about it.”

It’s uncertain whether someday all of New Mexico’s school districts will provide the aid students such as Walker Owens need, or if, as an adult, Walker will have to skip New Mexico altogether for adequate care. At the moment, noon has drawn near, and Walker has had enough.

Santa Fe Horse Park attendants help him off Ranger the Horse, and Walker sprints—limbs flailing—out of the show barn. Before he can make it to the parking lot, attendants stop him because he’s run off in his helmet. Despite his alabaster skin, it’s somewhat surprising to find that Walker’s hair is more blond than brown when the headgear is removed.

Sans helmet Walker completes the journey from the barn to the lot. He plays in nearby shrubbery until his “nana” detects him. At her side as they walk to the car, Walker makes a gesture that many autistic children disregard unless they are taught to understand its meaning: He waves. Only he uses more than his hand to do so. His entire arm undulates in broad, sloppy ripples—as if electrified, as if boneless.

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