As I've shared before, my 13-year-old daughter has Cornelia de Lange syndrome. It's a rare genetic syndrome resulting in growth delays, developmental delays and autistic-like behaviors.
At least, that's the way I used to describe it.
Now, I may be changing labels and "upgrading" her diagnosis. Why? Because we just got the test results back from a study we participated in through Children's Hospital of Philadelphia looking into behavior and autism in CdLS. Was there a higher incidence? Were there risk factors?
So, in 2008, we filled out several behavioral evaluation checklists. In February of 2009, I spent three hours on the phone with a researcher answering another battery of questions. And now, in July of 2010, we finally have copies of the data reports.
The verdict? Her scores are above the cutoffs for a suspected Autism Spectrum Disorder diagnosis and a full evaluation with her educational and medical team is strongly recommended. Anna will be going back to school in a few weeks. I'll pass the information on to her teachers and we'll see what they have to say before I contact our pediatrician.
In the meantime, what would Autism mean for our family?
As I discovered a long time ago when she was diagnosed with CdLS, a label doesn't change who Anna is. Nor how much I love her. However, a new label would give me another avenue to explore in trying to understand how she thinks. I have a lot more to learn but I might even discover ways to help her cope with transitions when her routines fall apart.
Will others understand her better if she was labeled with a more common condition than CdLS? Will it open doors to new educational strategies? How many new people will I meet as a result of learning more about autism?
What about you? Have you ever received news that turned your world upside down? Do you think that labels are important? Why or why not?