In 2007, the CDC determined that autism affects 1 in 150 children. Just this week, in a new study, it was determined that it now affects 1 in 110. This is a 57% increase from 2002 to 2006, and a 600% increase over the past 20 years. (source: http://www.autismspeaks.org/)
We first noticed that something was a little off with Jordan at 18 months. At this age, she should have at least been using two word phrases. She could say little more than "Mama" and "Dada." She spent alot of time spinning objects on her Fisher Price learning table, and would isolate herself when playing. My Mom called the Kennedy Donovan Center Early Intervention Program, who in turn called me to set up an evalutaion. In April of 2009, Jordan was found to be in need of services. At 20 months, Jordan's developmental delays put her at a functioning level of about 7- 10 months old. She was assigned a service coordinator (Carrie), who would come every week for an hour to work with Jordan on catching her up. I was excited, hoping that this would help catch my baby up.
The first couple of months were tough. Carrie would come for a visit, and Jordan spent more time crying in frustration because she just didn't understand. When we got into a playgroup through EI, Jordan began to blossom a little bit. She began babbling, and really interacting with the other children. But she still had horrendous tantrums, and more often then not would have a fruitless session. In the fall of 2009, she had made some progress, but not enough. We brought in a Speech and Language Pathologist, who determined that Jordan would probably need ABA (Applied Behavioral Analysis) and suggested that we seek out a neurologist to determine if there was "more going on". I had bells and whistles going off in my head. They couldn't outright say they thought she might be autistic, but I knew what they meant. I had knots in my stomach when Carrie handed me a list of local pediatric neurologists, and I remember crying that night. I didn't have an appointment yet, let alone a diagnosis, and already I was devastated. I called the next week and was able to get an appointment for January 15, 2010 through Children's Hospital Physicians at the South Shore.
Jordan became more verbal over the next couple of months, and had even picked up on some sign language. The tiny steps she was taking gave me a glimmer of hope, but the red flags of autism still flashed in the back of my mind. In the social aspect, she followed the other kids around and would play next to them, but not with them (parallel play). She still had her odd play (spinning objects, identifying colors on her toys in a specific order) and the few words she spoke were often echolailic. (Echolailia: repeating what is spoken to you verbatim).
My mother accompanied me to the appointment with the neurologist. After giving her a brief history, the neurologist determined that Jordan had ASD (Autistic Spectrum Disorder). She would need ABA right away and also needed to be in the public preschool's summer program. Having already spotted the warning signs, the diagnosis didn't come as tremendous surprise to me. I had already swallowed the bitter pill, and was prepared to deal with it's effects. But now it was official. It was on paper and it was real. My baby was now 1 in 110. I called Carrie on the way home from the appointment, and the next time I saw her at playgroup, she gave me several resources for ABA in the area. I immediately called Children Making Strides and got an intake appointment, and by mid February, Jordan was seeing a new therapist three days a week.
Between February and June of this year, Jordan made tremendous leaps forward with the help of both Children Making Strides and Early Intervention. At her final EI evaluation at 22 months, her delay was discovered to be between 18-20 months. She was actively using her words and signs and I was feeling very confident that she would do well with school. The school evaluation went well, Jordan qualified for the summer program and was given a 5 day, full day program for the school year. We were thrilled. She is currently doing very well in school. She can use full sentences, say her whole alphabet, and count to 30, as well as spell and say her name. Her echolailia is way down as well as her jargoning. There are times where you can hardly tell she's autistic.
But it's still there. It's in her tantrums and her screaming fits. It's in her destructive behavior when she gets angry. It's in the quizzical look she gives me when she doesn't understand. It will never go away. As far as she's come, she still has a long way to go.
And, as parents, so do we.
For more information on Autism, Visit these websites: