We’ve had our fair share of diagnosis days with Emelyn. Some
were scary, some were puzzling, and some were welcomed with open arms. In June
we headed to UVa with Emelyn to see her developmental pediatrician, Dr.
Norwood. Our major goal at that appointment was to officially have Emelyn
diagnosed with autism spectrum disorder (ASD). Why? Is an additional label
really necessary? We felt it was and so did Dr. Norwood.
Prior to our appointment we spent time documenting Emelyn’s
communication, behavior, and socialization skills/deficits to help make a case
for the diagnosis. These are the criteria, as outlined in the DSM-V, medical
professionals use to diagnose ASD. After having several people say, “Autism –
Emelyn doesn’t have autism,” I thought we might be in for a battle. With four
pages of notes, we were ready. Turns out Dr. Norwood had been thinking of an
autism diagnosis for Emelyn since he first met her, but wanted us to first uncover
the genetic components of her delays.
While Dr. Norwood had been thinking an ASD was in Emelyn’s
future, it really hadn’t entered our mind until we visited Chicago in April. It
was only after meeting several thriving girls with DDX3X that we realized why
they were making the strides they were, especially in the area of communication
– they had intensive applied behavior analysis (ABA) therapy (they too, often,
but not always, had an ASD diagnosis). In looking at the original study (and
only study at this point) published about the DDX3X mutation, 53% of girls have
documented “behavior problems” such as ASD. As I learned more about ABA therapy
it started to make sense why it was helping these girls and why it would have
the potential to help Emelyn as well.
Upon receiving Emelyn’s ASD diagnosis, we immediately began
the process of enrolling her at ABCs of ABA which is an ABA-based clinic. In
addition to having to have the ASD diagnosis to do this, it also meant we had
to withdraw Emelyn from Salem’s special education preschool program. At ABCs
Emelyn receives treatment five days a week for just over four hours each day.
While it’s called a clinic by insurance and medical standards, it looks and
feels like a preschool setting. Emelyn has a team of ABA therapist/technicians
who work with her day after day to overcome barriers to communicating,
socializing, and learning. For each child at ABCs, just like for every child
with ASD, the barriers are different. Emelyn’s plan of care is specific to her
and feeds off of her other therapy goals.
Emelyn’s ABA therapy is built around positive reinforcement,
which sometimes is just a hug or encouraging “yeah, Emmy – you did it!” and
sometimes it’s a chance to splash in water after walking ten steps in her gait
trainer. What I can tell you is we’ve seen remarkable changes in Emelyn in the eight
weeks since she started there. She’s using her hands more, she’s become much
more in tune to her surroundings and other people, and she’s starting to use
her iPad to make choices between two different options. These are things we’ve
been working on for more than a year now with little success, but in eight
weeks at ABCs she’s made huge strides.
It’s not uncommon to pick Emelyn (or Emmy as she’s affectionately called at ABCs) up from school and hear, “She’s mad at us today. We really worked her hard.”
Yet the next morning her smiles and giggles tell us she’s ready to go back for
another day of hard work and cheers from her peers and therapists. Just saying
the word school lights up her eyes.
 |
| It's easy to see why one of the moms at ABCs told me her son said, "Emmy just laugh and laugh and laugh." |
While receiving an autism spectrum disorder diagnosis may
have previously sounded scary to us, we welcomed this diagnosis because of the
opportunity it offers Emelyn to reach her full potential. We still remain
hopeful that Emelyn will one-day be able to communicate with us, and we feel
ABA therapy has the best potential to help her reach this goal.
