A Label is Not the Whole Story

by Katrina L. Fitzpatrick

     My son is a tall, gangly 13-year-old with a goofy grin and beautiful blue eyes. He was diagnosed at the age of two with Autism Spectrum Disorder. When he meets someone for the first time, they often comment that they would never know he has autism. Sometimes that is said dubiously, as if perhaps I - and the dozens of doctors, counselors, social workers, and therapists he has seen over the years - do not know what we are talking about. Clearly the polite, appropriate, drilled behavior with well-rehearsed scripted small talk they see in a 2-minute period outweighs the 11 years since he was first evaluated because his pediatrician was concerned that his language ability was not developing as it should.

     Or, maybe it is said in a way that sounds like autism must not really be such a big deal; after all - just look how high-functioning he is! They did not see me talk him down from the full-blown anxiety attack that hit him out of nowhere at eight o’clock this morning...or the one last night...or a few days before that...or hear the frequent calls home because he still has so much trouble controlling his behavior in school, despite years of assistance from classroom aides, counseling, social skills groups, occupational therapy, hippotherapy, and so on.

     Sometimes I hear notes of pity in their voices, as if a child with autism must be a burden that they themselves could never bear. They did not hear him giggle himself silly because I let him have a little maple syrup on his toast for breakfast and tell me that only the best moms do that. They don’t see when I’m sick, how often he comes to check on me and ask if I’m feeling just a little bit better yet, and wants me to quantify it with a percentage, if possible (yes, honey, I’m about 87% better).

     His developmental delays can be frustrating for him and everyone around us at times, but it has also meant that my only child has stayed younger longer than he might have otherwise. I do not know how many more times my nearly high-school-age son will unselfconsciously reach for my hand when we are walking together, or will still want me to sing to him every night.

     Autism is a spectrum, and no two cases ever look alike. He is verbal; some are not. He has an average IQ; some do not. He is unusually social, while some have far more challenges navigating social situations. He says exactly what he is thinking without a filter, which I honestly have mixed feelings about. I feel he should learn to temper that to fit in better socially, but at the same time, I envy his innocence and lack of self-consciousness.

     Autism is the least important thing about him, and at the same time influences everything about him. I wouldn’t have him any other way.

Katrina Fitzpatrick is a single mother and full-time college student majoring in social work at Texas State University. She plans to advocate for and provide support to caregivers of children with autism and other developmental disabilities.