Friday the 13th...Diagnosis day

Since April is Autism Awareness month, I have been reading so many interesting, enlightening, heartbreaking and even hilarious blog posts and articles about Autism/Asperger’s.  Most of them are written by mothers and fathers with children on the autistic spectrum. 

I did not feel like I could write a blog post about this topic since I am such a “newbie” to the whole world of parenting an autistic/Aspie child.  I’m just going to tell our story and how we got to where we are today.

My daughter was officially diagnosed on August 13^th, 2010.  It was Friday the 13^th and that entire day lived up to its superstitious reputation.  As my late friend Arwen used to say, that day was a “Craptastic Suckfest”.

But before I get to that appointment…let me back track a bit.

When Lilly was 2 ½ or 3 we started to really notice things about her that made her not blend in with other kids her age.  She was very quirky, impulsive, had peculiar habits and ways of doing things.  She has trouble fitting in with other children and got frustrated with them.  She was having behavior issues at home and at daycare.  I know every mother has that intuition thing with their children…and I don’t mean to brag but... I always joke that I have Ninja intuition.  I just knew something was up with my Lilly.  When she was 4, her daycare provider finally said something about how she was concerned about Lilly, so we decided to have her evaluated.  We took her to a pediatric Neurologist at the request of her primary pediatrician.  Her dad and I made a list of our concerns and also her strengths to discuss with the doctor.  This is the list we made three years ago.

Concerns about Lilly

• Poor impulse control
• Makes aggressive, angry faces
• Refuses to share toys w/ other kids or siblings
• Repetitive phrases/noises/actions
• Poor social skills
• Too intense for other kids/in their face
• Other kids think she’s weird
• Acts weird in group environment- doesn’t want to participate in group activities
• Excessive talking-even after asked to stop
• Has to do things her own way- refuses suggestions
• Very “klutzy” constantly bumping into things, falling.
• Very hyperactive
• Sometimes aggressive towards smaller children.
• Obsessed with tying knots
• Very defiant/argumentative-  always correcting others
• Wants others to say things “her” way
• Does not respond well to discipline

Great Things about Lilly

• Very expressive- uses large, articulate vocabulary-spoke at early age
• Super smart
• Very good at puzzles and colors extremely well and neatly for her age
• Extreme interest in details about movies and animals—likes to recite what she knows (over and over!)
• Can be very sweet and thoughtful with family.
• Excellent memory.
• Very sensitive.

The doctor quickly glanced at our list, ask her a few questions and after a short visit with him, he told us Lilly was just very bright, very sassy and needed to be enrolled in a formal preschool setting.  He said she was probably just bored.  We should also try a reward chart for her behavior. We took his advice…but he was super “old school” and I did not agree with him.

She learned a lot in preschool, but still had plenty of issues. Then she entered Kindergarten.  She had the best teacher we ever could have imagined and even though she had a lot of struggles with social and behavioral issues (meltdowns, rigidness, etc), she did wonderfully with her reading and writing.  We spoke with her teacher often and after a couple months in school, she agreed that something was going on with Lilly and she needed to be evaluated.

We were also having increasing issues between her and her younger brother.  She HATES him!  She was/is so mean to him.  It got so bad that we decided to seek counseling for her.  She was always crying, screaming, melting down about very minor things.  She would get out of control at times.  We just didn’t know how to handle or help her. We met with a psychologist weekly for counseling, a Psychiatrist monthly and she was given cognitive, adaptive behavior and even IQ tests over the course of a year. 

Ok...fast forward to Friday the 13^th.

I went to the appointment alone (the Ex DH had other plans…perfect example of his priorities?! *sigh*).  I had known for at least a year or two that Lilly was most likely on the spectrum…but I wasn’t totally sure and I was hoping I was wrong (to be honest, I am never wrong…ever!  Don’t hate).   

At that appointment, her psychologist was presenting us me with the final outcome of their thorough evaluations.  It was a 13 page report detailing every aspect of my little girl.  The nitty gritty of the report said that she was much smarter than her actual age, but as far as emotional, coping, self care and social “skills” she rated about the same as her 2 year old brother (she was 6 years old at the time). 

They gave her 3 official diagnoses.

Asperger’s

Unspecified mood disorder

and ADHD.

I knew all of these things…but to hear them, see them on paper and be told that my child was on the autistic spectrum was just excruciating to hear.  I went out to my car and sobbed like a baby.  My parents were out of town, Lilly’s dad was out of town, and the guy I was dating (who also had an autistic son) broke it off with me earlier that week. I had nobody to call and I felt so alone.

It has been 8 months since that day.  Her dad, teachers and myself are doing our best to be understanding, knowledgeable and to help her be happy and thrive.  I joined a local support group for parents of Asperger's/HFA children, read as much as I can about it and recently met a bunch of other great parents in similar situations on Twitter.

Lilly does not know she is an Aspie or what ADHD is.  She knows that she is unique, creative, smart, sassy, and views things in a different way than most people.  She knows that her parents, family, friends and her teachers love and adore her. 

I think that is all she needs to know right now.