At six months old, J.T. Trimyer could sit up on his own while he continually rocked himself. When his parents, Sara and Cory Trimyer, mentioned this to their pediatrician, she suggested monitoring what was not unusual behavior at this age. Six months later, Sara heard presentations on autism and realized the stories sounded like her son, but at one year old, it was too difficult to know if these were really signs of autism. At 18 months, the signs became more obvious: JT’s only communication was non-verbal, he was withdrawn and difficult to engage socially, avoiding eye contact. Around new people, he acted like they weren’t there.
At his two-year well visit, the pediatrician referred them to the Autism Community Network for further evaluation. Not wanting to wait six months for an appointment, the Trimyers connected with Dr. Louise O’Donnell at the University of Texas Health Science Center San Antonio, who performed an in-depth evaluation, leading to a diagnosis of autism, which by this point, they expected. This led them to the Autism Treatment Center (ATC) in San Antonio, which has been helping families of autistic children since 1978, providing resources and support as families began this journey.
In the U.S., autism affects one in every 68 children. While it may seem that autism is on the rise, the change in diagnostics and heightened awareness have led to more diagnoses. Indeed, Dr. Bill Frea, an expert in the field of autism therapy and director of Ascend, in Boulder, Colo., sees an increase today compared to 10 years ago. Despite the improved diagnostic tools, diagnosing autism is complicated: it requires the child to have a delay in language and social functioning and have behavioral issues, says Dr. Frea.
Because early intervention has proven to be effective in improving the outcomes for autistic children, the Autism Treatment Center is encouraging early diagnosis. For a parent, knowing how to distinguish what is within the “typical range of development” or signs of autism is problematic. Alerting their pediatrician to their concerns is the first step. Drs. Chris Johnson and Scott Myers have developed a toolkit to assist pediatricians in identifying the early warning signs, but pediatricians are not autism specialists.
Dr. Frea has worked with many families who were told to wait until age two for treatment. As a result, their children did not receive effective treatments earlier. That is a lost year, at the most critical time for intensive early intervention. The best outcomes using Applied Behaviour Analysis (ABA) are achieved when children begin at age one or two.
Bude Woodson was three months old when his brother, Han, 18 months old, was diagnosed as autistic. The Woodson household was trilingual, so speech delays were expected, but Han wasn’t responding to sounds, and his parents thought he was hearing impaired. Further evaluation confirmed autism. While Rachel and Jeff Woodson were adjusting to the reality of Han’s diagnosis, they knew that a sibling of an autistic child has a higher chance of being autistic and were concerned about baby Bude. (Han’s older half-brother, Grey, is not autistic.) Though too young to be diagnosed appropriately, when Han’s therapists saw similar signs in Bude, they began to work with him as well.
Now five years old, Bude has similar tendencies to his older brother but is not autistic. Did early intervention change the outcome? That’s not clear. Bude clearly benefited from the therapies, but it’s possible he would not have been diagnosed with autism.
Ivy Zwicker, Director of the Autism Treatment Center in San Antonio, noted that autism is another way humans process information. The difficulty lies in the inability to communicate those processes in a way society understands. We know that learning a second language is more effective the earlier a child starts because their brains are more adaptable. The same is true for autistic kids: learning to speak their “native“ language is like learning a foreign language, so this is a language immersion program, tailored to each child’s unique communication style. If they use objects or pictures to communicate, the therapies focus on the use of those to develop communication skills which also helps the child to deal with the frustration and inevitable outbursts that come from an inability to communicate.
Seeking guidance once JT Trimyer was diagnosed, his parents turned to the ATC, which works with children and adults from three to 22 years old. Programs can involve from 8-20 hours per week of speech, occupational therapy and social/behavioral work. While much attention is focused on speech, learning to understand social cues is a key element and the ATC provides group therapy programs that develop those skills. In addition to these services with families, the ATC is contracted by many school districts to work with these children in the school setting.
Autism is a spectrum of disorders, so what works for one, will not work for all. The program at the ATC individualizes the therapy plan for each child. According to Ms. Zwicker, 46% of the new diagnoses do not have intellectual disabilities. This means that with intensive early intervention focusing on communication and improving social interaction, many of these children can go on to integrate into mainstream society by the time they reach adulthood.
For those with more severe forms of autism, the ATC has residential facilities, both for children and adults. Unfortunately, there are very few such programs in the US and they are expensive, between $80,000 and $100,000 per year for adults. For the children, families struggle to access services. While the ATC has been very helpful in many ways for the Trimyers, their insurance does not cover the cost of services ATC provides. Their insurance provider agreed to three speech therapy sessions which doesn’t begin to touch the surface of what their son requires. They are now seeking options with the Affordable Care Act to determine if they can get better coverage, and therefore better access to therapy. The Woodsons quickly used up the few therapy sessions their private insurer allotted, and have paid out of pocket. They moved school districts, taking on another mortgage, so their son could access care in school.
While families struggle to obtain therapy for their children, the social dynamic of the family has to adapt. The Trimyers’ eight year old daughter is learning to communicate with a sibling who can’t interact with her as she expects. Meanwhile her parents try to balance the needs of both.
The Woodsons planned to have more children, but decided not to knowing the genetic risk of autism. Han is now seven, his half-brother, Grey, is 12. Along with younger brother, Bude, the boys act like most brothers do: they play, they fight, they love. The natural chaos that ensues is contrary to what most autistic kids require, including Han. But because he is with his brothers with whom he feels safe, he is pushed beyond his usual limits. This is why, ultimately, the therapy is not just focused on the individual child, but on the family.
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*Featured/top image: A young child stares into an interactive white board during an exercise at the Autism Treatment Center of San Antonio. Photo by Scott Ball.