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Living with Autism: "Losing My Little Boy"

A Fierce Determination

With that adjusted perspective, Nicole began her search for information anew, seeking out websites that used words like "hope" and "recovery." Choosing not to be limited by Nevada's offerings, the couple hired private speech and occupational therapists. "Two months before Ryan started losing words, we moved into our 'dream house' and cut down on spending," says Nicole. "We had no budget for two therapists to come once a week at $135 each, but there was no time to spare."

Nicole was also determined to get a diagnosis and more state-funded therapies for Ryan. She contacted autism-advocacy groups and learned that having Ryan evaluated and diagnosed by a doctor who specializes in detecting and treating developmental and behavioral difficulties (what's known as a developmental pediatrician) would officially qualify him for state-funded services. During a planning meeting she had with her team of NEIS specialists, she insisted on getting an appointment with the organization's developmental pediatrician. Her demand was met, and she had an appointment scheduled for two weeks later. Still, she was afraid of getting the runaround and once again walking out the door without a diagnosis.

Nicole felt her next move would make all the difference: She took Ryan back to their family pediatrician for a diagnosis. The doctor was shocked to see the once-vivacious boy she'd known sitting in the corner, staring at his fingers. She listened as a shaken Nicole rehashed all that had happened with Ryan. The doctor hugged Nicole, and handed her a diagnosis of autism.

That gave Nicole more confidence when meeting with the developmental pediatrician about a week after, in late September. The doctor agreed that Ryan had autism, and in addition to the therapies they were learning from the NEIS coach, the doctor approved a larger range of services, including a speech therapist, occupational therapist, and nutritionist.

Since that diagnosis, the scope of Nicole's daily to-do's has become mind-boggling. The biggest nonnegotiables on her schedule board -- which is prominently posted over her desk -- are practicing the therapies she's learned. About five times a day, Nicole "brushes" Ryan: She strokes his back, hands, arms, legs, and feet with a plastic-bristled brush to help him adjust to sensations, including touch, which can overwhelm him (sensory issues are common among children with autism). For the same reason, she does "heavy work" with Ryan three times a day; she might, for instance, have him pick up a weighted ball. And she gives him deep-pressure joint compression massages (she presses on combinations of joints, such as ankle and knee, to release the calming brain chemical serotonin). Nicole wishes she had more time to explore treatment options. No matter how much she does, Nicole is certain she's not doing enough.

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