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It was the summer of 2011. I could feel my carotid artery pulse as I walked toward my front door, clutching the business envelope from the children’s hospital on that August day. Was Josie officially on the autism spectrum, or did the doctor leave it out because of my mild protest? Dr. Wong had implied that my daughter’s potential Asperger Syndrome was so mild that its symptoms may disappear in the next few years.
What would Dr. Wong say about Josie‘s younger sister, I wondered, if she met her? Would she also say she saw something mildly “off” (to use her rude wording)?
Inside, I climbed the stairs, away from my husband and girls, to read the medical results. No mention of autism, as it turned out. The doctor focused instead on our daughter’s overall neurological strengths, strong relationships with us, and academic assets. No further testing was recommended.
No formal diagnosis — I couldn’t decide if I was disappointed or relieved. Almost two years later, I’m still deciding how hard to pursue a label, or whether we can even afford to.
Now, a dozen books about autism later — four or five of them about girls specifically — I don’t doubt the Asperger’s label. For so many reasons, it seems to fit each of us in striking ways. Our family — two parents, two kids — moves through space awkwardly. We can’t seem to figure out who’s going to go through the door first, second, third, or fourth.
My husband and I both remember having the same thought our first day of kindergarten: that it must not have been the other kids’ first day because they all seemed to know what to expect of one another, and we did not. He even studied engineering for a while — a classic Asperger’s choice — and sees words and numbers as colored images (synesthesia). I subconsciously count the syllables in nearly every word I encounter, every day, and have done it since grade school. I don’t need to know the precise number, just whether the string is even or odd.
We are quirky adults who procreated, and we are not terribly surprised to find our family here, in Autismland. Whether it’s missing genes, as some have theorized very recently, or simply nerds marrying, as Time magazine reported, we found one another in college and have enjoyed our union ever since.
Autism is most likely the reason that Josie’s motor coordination, particularly bi-lateral, doesn’t come easily — not unlike mine. (Now, in my 30s, I regularly jog, bike, skate, and cross country ski — on my own time, alone or with my husband. Just don’t ask me to join a volleyball or softball league, where others may get in my space to grab a ball or yell at me for missing it.) Because Josie’s large motor skills are about three years behind those of her peers, she was seven and a half before the training wheels came off her bike. Her sister, at eight, is almost ready to take off hers.
Josie has had a solid year of orthotics and physical therapy to stop her preferred gait, tiptoe-walking, which was affecting her tendons and muscles. (Turns out my husband was briefly a toe walker as a child, too, as well as a head banger.)
Josie sees a word once and knows its spelling. I’m the same way. I was called “The Walking Dictionary“ in school, much to my annoyance; but my abilities earned me a partial college scholarship based on my ACT score.
Josie cannot wear most clothes without great distress — no tags, no jeans, no tights, no tight shoes, one brand of socks, another single brand of underwear. She can play for hours with one to three other kids, creatively and peaceably — if, and only if, she gets some alone time at regular intervals.
While Josie is a sensory avoider, her sister is a sensory seeker. When Molly, at six, was tired or over-stimulated in public, she twirled her hair or tried to dangle her whole 50 pounds from my arm and seemed offended when I protested. She liked to hug my waist so hard it hurt. She roughhoused on the bed during story time and kicked me accidentally several times a week. Molly was both surprised and contrite each time it happened.
A family trip to Muir Woods, where we shared the trail with several other hikers, included a heartbreaking conversation where I had to stress to Molly that her sense of space is just not the same as others’. She cried while she hiked for the next 20 minutes or so, and it was hard not to cry with her.
Although we weren’t going to any specialists before the summer of 2011, we’d intuitively made plenty of major accommodations to both girls’ quirks. Some were simply choices based on our parenting values, and others were choices based on their emerging personalities. Here’s a partial list of those choices, in no particular order:
Seeing this list of accommodations we‘ve made makes me proud of the long journey we’ve made before and since the doctor brought up Asperger’s. I had always wondered about the kids’ lack of ease in so many situations, and why our tight bonds with one another sometimes don’t equal physical and social grace. Now I understand that we are probably all on the autism spectrum, and it explains so much.
Looking back over the last two years, I see that life is so much better now. Recognizing our ASD (Autism Spectrum Disorder) traits seems like a mixed blessing. Both girls have earned a place in our school’s gifted and talented program with their reading and math abilities. It seems their lack of focus on socializing pays off in academics.
Josie has been fortunate to have a teacher who understands her and insists that all his students treat one another kindly. Plus she sees a psychologist she adores twice a month to help process the complexities of life with her fellow students.
Molly was assessed and given the label PDD-NOS* — a label that means uneven development, often associated with autism (although it’s rather gray). Molly has had some social skills coaching that makes her peers’ behavior less confusing, and has helped her assert herself better with aggressive peers.
I recognized during the summer of 2011 that I needed to nurture all of us differently in light of autism, whether or not either child ever needs an IEP or the diagnosis ever appears on any medical transcripts. I’ve become an effective manager through trial, error, and a couple good parenting books. My husband is comfortable following my lead, once I’ve figured out what works. All three of us emotional females lean heavily on his hard work and good-natured personality.
I now attend a support group each month for parents of “2e” or “twice-exceptional” children. There I hear about children’s gifts and challenges that are generally more extreme than ours; but these parents are kindred spirits, balancing their children’s striking gifts alongside their struggles day to day and week to week.
Many parents in the support group have children who are officially autistic. I still don’t know exactly what to say about our family and autism, except that if the most effective coping strategies, specialists, and tools have come from the autism community, then isn’t that a community we need to remain part of?
*The abbreviation PDD-NOS stands for pervasive development disorder, not otherwise specified. This diagnosis, along with Asperger’s, no longer appear in the new edition of the Diagnostic and Statistical Manual (the DSM-5). Clinicians use the standard guidelines provided in the manual for diagnosing psychological disorders and conditions.
Fiona Babbitt is the nom de plume of an occasional essayist in local and national publications. She works part-time with amazing elders, many of whom have wished aloud that their strengths and weaknesses could have been identified and supported as children. Learning about the lifelong struggles of these individuals with learning and identity helps motivate her efforts to advocate for 2e girls on the spectrum.