The Secret's Out.

When my daughter was diagnosed with autism, my husband and I had no clue what that really meant.  We walked out of the doctor's office and had no idea what to do or where to turn.  We just knew that our daughter's life would never be what we had envisioned.

It took us some time to tell our families.  It took us even longer to tell our friends.  We had so many questions.  What if the doctor was wrong and we had prematurely labeled our child with this diagnosis that has such an ugly stigma.  Would she grow out of it and no one would ever have to know?  It seemed so similar to having a death in the family.  We went through the five stages of grief  (Denial, Anger, Bargaining, Depression and Acceptance).  The bad part was that we went through all of this completely on our own.  It was not that we didn't trust our family and friends to be understanding.  We just couldn't bear the thought of facing the multitude of questions we knew we would receive.  I mean, how on earth could we answer the questions that others surely would have, when we were still searching for our own answers.  

We eventually told our immediate families.  We talked it over and decided not to tell aunts, uncles, cousins or friends at that time.  Telling everyone would make the diagnosis real.  It was almost as if, as long as we didn't talk about it, it couldn't be so.  Of course, the autism didn't go away.  The doctor wasn't wrong.  That meant we eventually had to tell the rest of our family and our friends.  The reactions that we received varied greatly.  Some just said how sorry they were that this had happened to us.  Others questioned the diagnosis with statements like, "What in the world makes the doctor think that?"  Nothing that anyone said could have helped.  We didn't want people to feel sorry for us, and we sure didn't feel like having to justify a diagnosis that we would have given anything to have been wrong.  

I sadly remember that we decided not to tell my daughter's cousins.  We just felt that they were too young, and we didn't want them to treat her differently or think differently about her.  I later found out that the older cousin had overheard her grandmother speaking to a friend at church about her granddaughter having autism.  The older cousin was so upset.  She cried to her mother and said, "how could this lady at church know that her cousin had autism, when she didn't know and she was family."  When I found out that this had happened it broke my heart.  I was not mad at my mother in law for talking to her friend about my daughter having autism.  She surely needed someone to talk to and we needed all the prayers we could get.  This event just helped me to see that we weren't doing anyone any favors by keeping the information to ourselves.  I felt like I had wronged my niece by not trusting her with this information.  She was young but has always been mature.  Looking back, we should have been up front with her about the autism diagnosis.  My niece is growing into a beautiful young woman and she is absolutely wonderful with my daughter. 

Since the time after my daughter's diagnosis, my outlook has totally changed.  I felt so alone after I was told my daughter had autism.  But when I finally started confiding in others about my situation, it was amazing the amount of people who had a child or knew a friend whose child was on the spectrum.  If people had been more vocal about their own experiences, I probably wouldn't have felt quite so alone during that scary time.  

The fact that one in eighty-eight kids is diagnosed with autism speaks to the fact that many more people are affected by this diagnosis than we realize.  Just because children with autism have trouble speaking, that doesn't mean that the families and friends of the children should have no voice.  My goal is to increase awareness.  I hope that others who are in the midst of the grieving process after receiving an autism diagnosis won't feel quite so alone in their journey.