My daughter has always been “different.” At first, nothing was obvious. I had only a nagging sense that she was not like the other kids, a quality of “otherness” that I found difficult to explain to her pediatrician. My wife and I continued to feel this way until Kerrianne, at around nine years old, was diagnosed with Asperger’s syndrome. With this medical diagnosis, things began to make sense.
Note: Since the American Psychiatric Association published the fifth edition of its Diagnostic and Statistical Manual of Mental Disorders (DSM-5) in 2013, diagnoses of classic autism, Asperger’s syndrome, and pervasive developmental disorder-not otherwise specified (PDD-NOS) now fall under the diagnosis of autism spectrum disorder (ASD), which is categorized by severity on a scale of one to three.
Despite the medical diagnosis, Kerrianne didn’t meet the requirements for an educational classification at school, so she was not considered for an IEP (individualized education program). However, the school did make educational accommodations through a 504 plan. My daughter continued to “sink or swim” with the neurotypical children, sometimes with wide, anxious eyes, but now she wore a life vest.
Through trial and error and a lot of help, Kerrianne has learned to make “being different” work for her. Today, all of her sixth-grade classes are honors courses. My daughter is an A student! Plus, she works on the school newspaper, volunteers at her old elementary school, and acts as a Junior Achievement young ambassador. As a Girl Scout junior, she earned the bronze award by organizing the First Annual Children’s Art Gala to benefit children with special needs at the Mary Campbell Center. (She’s planning the second one for May.) The bronze award is difficult to earn; it is the highest award that a Girl Scout can earn at the junior level. In 2014, she was named a Mid-Atlantic safety patrol of the year.
Until last year (when we moved to Delaware), every extracurricular activity that Kerrianne participated in was designed for neurotypical children. What we learned through this process is that most people want to allow your child the opportunity to be successful in her extracurricular activities. Most children will adapt to the participation of a child who’s different. The key is communication and confidence. So, at home, we prepare our daughter for things that may happen in a new situation by role-playing. For a situation in which she may feel threatened or uncomfortable, we review who to tell, what to tell, and how to tell it. We also communicate with the adult in charge about what to look for and how to resolve issues that may arise because of our daughter’s ASD.
Many times, we struggle with the right time to reveal that Kerrianne has ASD. Mostly, we wait until we are meeting face-to-face with the person in charge of the activity. As a result, the person in charge will associate the new situation as with Kerrianne and not with “some kid with a disability I met once.”
A key factor in our daughter’s success has been teaching her how to grow into her social identity, that is, her race, ethnicity, gender, sexual orientation, and religious belief. Like any other facet of her social identity, having ASD is something she needs to feel good about. Because we want her to be proud of who she is, we teach her to embrace all of who she is.
We also make sure that our daughter participates in activities with other neuro-atypical children, like those who attend Special Olympics Delaware, the children and youth program at the Mary Campbell Center, and the PEERS program offered at our daughter’s school.
Altogether, our effort has helped our daughter build the confidence and skills she needs to be successful in any setting. Our experience in raising our “different” girl in a typical world has been exciting and beneficial. Yes, more effort and monitoring have been needed to include her in the extracurricular activities, but all of it is worthwhile because our Kerrianne is growing into a life in which she will thrive.
Sun contributor Tonia Bell-Delgado is the parent of a daughter on the autism spectrum.
This text was edited for consistency of language and message and appears in the April–June 2015 issue of the Autism Delaware™ quarterly newsletter, The Sun