Autism Aware- Our Journey to Diagnosis

Cullen was born in the summer of 2009, my first baby.  My husband and I were overjoyed, and Cullen is total perfection.  

Seven Months

Life is crazy with a newborn.  The days and nights are long but the months seem to flash by you in a moment.  Before I knew it, he was nine months old and I was expecting again.  Our daughter Maggie came in the winter of 2011 when Cullen was just 18 months old.  Cullen was so sweet and gentle to his little sister, and Maggie, like her brother, is total perfection too.

Eighteen Months

But it was about this time that I was growing concerned about Cullen's lack of speech.  He could make known to me his desires, but when compared to his peers, he was noticeably behind.  I talked to his doctor.  "Boys develop slower.  He's fine.  He'll catch up."

Two Years Old

By his next well-child appointment he hadn't caught up, and I felt he was displaying a few odd quirks, so I reiterated my concerns.  But "boys develop slower and he'll catch up."

Three Years Old

Later that year we moved back home.  We set up with a new physician's office about the time Cullen would have been two and a half and Maggie now a year old.  I spoke of my ongoing concerns about Cullen's speech delays and a referral was made to CSIU (Central Susquehanna Intermediate Unit) for a speech therapy evaluation.  It was probably May 2012 until the evaluation happened.  I talked to the CSIU teacher about my fears that this was more than a simple speech delay, that this might be autism, and she agreed.  She helped set us on the right path, explaining that if therapies and services were going to be covered we would have to apply for Medical Assistance, but that it would only be approved if Cullen did in fact have a disability.  So he would have to be evaluated by a specialist.

At this point we had moved again to our current home and started up with another new doctor.  I simply requested a referral to a specialist for Cullen and that request was granted.  We were placed on a waiting list to see a neurodevelopmental pediatrician, and the wait was long.  So we were kicked back to a pediatric neurologist who we met with in January 2013, Cullen now three and a half and Maggie two years old.  Yes, even the wait for the back-up doctor was long.  This doctor spent about fifteen minutes in a room with me and my son, asked me some questions, then determined, "Your son does not have autism.  In a year's time, he will be normal."

Four Years Old

But I knew he was wrong.

So I called to find out where we were on the neurodevelopmental pediatrician's waiting list and learned that we had been taken off it when we got the appointment with the neurologist.  I couldn't believe it.  I felt really hopeless at that point.  If early intervention is so critical, then why am I the only one who thinks this evaluation needs to be prioritized?!  The staff at Geisinger's Autism & Developmental Medicine Institute (ADMI) were sympathetic to our situation and said they'd do all they could.  We weren't expecting to be seen by the specialist until February 2014, but by God's great mercy Cullen was seen at ADMI in July 2013, right around the time of his fourth birthday.  Cullen was evaluated by a professional team of specialists over the course of several hours.  Then we came back a different day to meet Dr. Thomas Challman, the neurodevelopmental pediatrician.  Dr. Challman spent nearly two hours with us that day, interacting with Cullen and asking me questions no one else had ever asked me before.  And I just remember thinking, "Finally.  Finally someone hears me."  Before we left, Dr. Challman said the words I had suspected for nearly two and a half years, "Cullen has autism."

Five Years Old

I know this story has a tone of sadness, regret, and frustration.  But I share it to highlight a really important fact- you are your child's voice.  If I had been more assertive, more insistent, maybe Cullen would have been evaluated at eighteen months.  And if he had, therapy could have been started much, much sooner.

If you are someone reading this with concerns about your child, I hope that you learn from my mistakes.  Speak up.  Ask for a referral, a second opinion, an earlier appointment, whatever it is that you think your child needs.  And don't stop asking.

So we have our diagnosis.  For a moment, I breathe a sigh of relief because I finally have an answer.  But then it comes, the question, "Now what?"

There are so many resources available online, it is truly overwhelming, and sometimes impossible to decipher fact from fiction.  I wholeheartedly trust and respect the caring professionals at ADMI.  Their website has links to resources as well, but keep in mind that the internet is not a replacement for a conversation with a real, live healthcare provider.