The idea of a label changing reality rather than just describing it is something I have been grappling with. My quirky, ultra-sensitive little girl is set to be formally assessed by a pediatric neurologist and I fully expect that she will, at the very least, be diagnosed with high-functioning Asperger’s.
As a toddler, my daughter was evaluated through our school district and received occupational therapy and social skills services. I appreciated the willingness of the system to step in early and help, but by the middle of kindergarten, such assistance was not deemed necessary in her educational environment.
The truth, though, is that my little one’s challenges extend far beyond her performance in school. She is bright and can do well academically—she can “hold it together” behaviorally during the school day. So, it’s not the district’s concern that she really doesn’t eat at school, and at home only consumes a very small selection of specific and not particularly healthy foods. It’s not their problem that smells, tastes, sounds, and textures can easily overwhelm her; that certain tactile sensations that come with daily hygiene, such as hair or teeth brushing, are downright painful to her. Or that a new or unexpected experience can be seriously anxiety-producing—they won’t see these things during a routine school day.
Many of the stresses in my little girl’s life are not going to appear as a problem in school; she’s in that gray area of superficially typical, but life is harder than it should be for her. She and I both need tools and support to cope—we need to use particular strategies for overcoming obstacles so that success and happiness can be achieved. So I had to go look past the minimal services a school district will provide because in actuality, these are life challenges. Last month, I made that first phone call to a specialist referred by our pediatrician, and I filled out a large stack of paperwork, finally putting it all out there.
Now I wait until the three lengthy evaluation appointments, thinking about what I hope to gain from a diagnosis. We may or may not get more services at school; they may not really be necessary. Maybe I will feel validated in my suspicions, but that’s not particularly important. Of course I hope I will get more encouragement and ideas about handling the difficulties—that is my clear desire.
It makes me a little sad thinking about what the label could mean for my daughter. She may be a child on the autism spectrum, but will the label change who she is? No. But if it changes others’ perceptions of her, including mine, then honestly there will be a very real shift.
So, while I wait, I will continue to love her unconditionally exactly as she is. Especially, in fact, for who she is…because she is interesting, and funny, and tender, and intense. I just want to make life easier for her and I want others to understand her better. I will pursue whatever it takes for these things to happen, but admit that I fear a label, too. It might not always be used in a positive way; I am aware of that. As I wait, I will prepare myself for what I may hear, and I will steel myself to be my baby’s fiercest protector and advocate, no matter what. And I will begin to accept the idea that her label might change who I am as well.