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?
(Update 2011: For encouragement and strategies from other parents facing issues including autism, see Making Lemonade: Parents Transforming Special Needs.)
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?