Telling your child she has Asperger's

I guess perhaps we should start with how not to tell/explain to your child that he/she has Asperger’s Syndrome or any other disability.  If many of you watch Parenthood, which is one of our absolute favorites here is a clip from the show when Adam and Christina tell Max that he has Asperger’s: 

http://www.nbc.com/parenthood/video/ep-218-the-runners-stumble/1307085

I may have practiced that one before I sat down to tell him.  We had already told Molly at this point, and after watching this clip it was one of those rare instances where I felt I should pat myself on the back (these moments are especially rare lately).

For many denial is a way of life.  They somehow don’t see the problem or choose not to.  Our experience has been different.  Molly started life just as most other children do.  I had a normal pregnancy, delivered her at 40 weeks and breast fed her until 14 months.  She was alert and all developmental milestones occurred early.  She has always been curious and as I mentioned before just has a joie de vivre!  The only characteristic I would note looking back - her sensory issues have existed for as long as I can remember.  I just wasn't aware of what was going on, as she was my first child, that was just Molly.   When she entered school as a kindergartener life started to change.  

Suddenly odd behaviors started to emerge.  Strange animal noises were present at inappropriate times as well as many anxiety issues - these became significantly noticeable in first grade.  I had the benefit of being a first/second grade teacher before she was born and as such was very familiar with “typical” behavior for this age. Something was “off” and we searched high and low, hit brick walls, had several misdiagnosis and by 4th grade still nothing.

I was struggling trying to help her and failing miserably.  The only way that I was succeeding was providing her with a safe place and trying to focus on her strengths.  As I have said in a previous post I felt that she had so many of the characteristics of Asperger’s Syndrome (apart from her brilliant sense of humor) that I started purchasing books and reading about it, searching for tools.  Luckily, Ms. L. at school had also observed Molly’s behavior and called.  Legally, school specialists are not allowed to diagnose.  She proceeded to ask me if there had ever been a diagnosis for Molly.  I shared with her that she had had a misdiagnosis of ADHD (which she does actually have as a co-existing condition) but that I had always felt she had more of the characteristics of Asperger’s.  Ms. L. then proceeded to tell me she was so glad to hear me say that as she felt as though (with her experience dealing with these kiddos at school) Molly had those characteristics as well and the sense of humor characteristic is actually a misnomer.

I immediately called and scheduled and appointment with a notable Pediatric Neuropsychologist and Molly and I were put on a wait list for an all day panel of tests.  While we waited for the results I was reading several books at once, looking for some help and suggestions.  Luckily, falling asleep is a troubled area for Molly.  At this point I would normally go in and lay down with her for a little while trying to help with some of the anxiety and quiet her day.  It was at this point that I took out the book Can I Tell You About Asperger Syndrome?: A Guide for Friends and Family. I had left it in her room hoping that she would read it on her own time.  After a few days of suggestions I grabbed the book and jumped on her bed.  Laying there as we did many nights we started discussing the day and I brought up Asperger’s.  I told her that I thought she may have it, but regardless of the diagnosis she has many of the characteristics and as such maybe we would find the tools to help her inside.  

I went on to explain (before we opened the book) that Asperger’s comes with strengths and challenges.  We started with the strengths focusing on her math and science abilities, her strong vocabulary and her amazing writing and reading skills and that these have all been fairly effortless for her.  Our discussion moved to discuss other kids at school who need help with math and other subjects, they try and try but just can’t seem to grasp it and need additional help in the classroom and at home.  She knew several kids in her class that needed these type of interventions.  We then addressed the issue of her struggle with social norms and friendships.  A lightbulb went on.  “Oh I get it!” she said.  “I am really good at those things at school, but have a problem with the social part!”  Explanation complete.

The book is a story about Adam and takes the reader on a journey of what it is like to be him.  It focuses on his high interest areas, upper body muscle weakness and many other similarities.  I read through it that night and I will never forget the look of peace on her face.  She was so relieved to hear that other people felt just like her, that she was not alone.  Which is exactly why I write this blog for those of you who feel you are, you are NOT alone.