Painful Journey to a Diagnosis

My journey to the diagnosis was very long.  10 years to be exact.  


It began with a 2 year check up and the doctor telling me his speech was slower than usual.  We were skeptical and dismissed it believing that he would catch up with time. But agreed to some tests just to make sure.  They said he needed speech therapy.  So he began his speech therapy at 2 at a small school twice a week.

When he turned three, in order to keep him in speech therapy, he went to the special education class in the public school.  He was still shy, unable to engage with other kids his age.  He preferred his trains, toys, and books.  He preferred to be with adults rather than other children.  We dismissed it again because he was the only child in our family and he stayed with adults all the time.  My parents took him to the playground so he could  be around other children his age, but he would only follow older children or just prefer to play alone.  We thought he was shy.


When he turned five, he began kindergarten in a regular class.  He was taken out an hour a day for speech.  I was happy he was in a regular class. I still waited.  The IEP meetings were a joke in my case.  They were unable to tell me what they were going to do.  I was clueless too.  They wanted him in Special Ed because he had a learning disability but couldn't really tell my why. 

One day I made a visit to his kindergarten class.  The desks formed small circles, but I found him sitting in a stand alone desk that you would find in the library. She said he wasn't paying attention.  Maybe I overreacted, but I pulled him out the next day. I found out later that he was put into that corner almost everyday. 


After searching for a private school, I placed him in a small private school and found that they didn't know what to do with him either. They said should be tested for either ADD or ADHD, but they couldn't help him. After two weeks, I had to pull him out again and finally found a Montessori school with very small group of kids with individualized attention.  Fortunately, the school was fairly new and next to a school for special needs children including autistic kids.  He sat through variety of tests and found that he had an exceptionally high IQ, but he didn't have ADD or ADHD.  He had similar traits, but that was ruled out.  But his ability was very much appreciated in a small school.   


As he finished 2nd grade in that school, he was reading at a high school level, but his social awareness was no where to be found.  He was happy socializing with adults or by himself.  They just described him as a walking encyclopedia.  I thought he was able to join the regular school.  But I was wrong.  

His intellectual brilliance fell flat when he began elementary school. He couldn't communicate with other children because he did not know or cared about anything a 3rd grader would.  When he finally tried to join in, he just didn't know how.  I found him by himself after school and began getting calls from the teacher regarding teasing.  


I thought he would eventually grow out of it, including my parents. Maybe he was shy or it was his personality. My sister thought otherwise.  To be honest, I knew that there was something wrong, but did not like the stigma that came from having psychiatric testing.  It was my sister that finally convinced to put my prejudice aside and put my son's needs first.


When I got the diagnosis, I was full of mixed emotions. It was sad that he had something.  I knew it wasn't the end of the world, but the fact that he had to face challenges that others did not saddened me.  


Will wasn't weird.  There was nothing wrong with his personality.  He wasn't shy.  He was different.  There was finally a name to what he had.  

He began therapy at 3rd grade.  I read as much as I could.  But our journey was just beginning because it was going to be a learning experience for him and for the rest of the family.  

Must Read for all parents

I have read many books relating to Asperger Syndrome and even though there were good materials out there, nothing touched me more than this one.  This helped me understand his point of view and how he saw the world.  I would recommend this to the parents and when the child is old enough to understand something he can relate to so that he can feel that he is not alone. 

Learning to read body language for Asperger Child

After the bullying incident, I had to pick up a few books on body language.  Unlike us, they lack this ability more than others and sometimes, they don't have any of these skills.  I am making him read these books.
 I am finding  BODY LANGUAGE HANDBOOK by Gregory Hartley and Maryann Karinch really helpful.  I hope you pick it up and read with your child.  I am going through this book with him and trying to teach him the basic signals that he doesn't pick up on his own. 

Bullying in School

Teenage years are suppose to be hard.  But having Asperger Syndrome makes it even harder.
He has a high IQ, honor classes, and participates in JROTC.  But socially, I can only describe him as socially immature and awkward with the lack of eye contact, odd posture and gestures, and inability to read body language and missing cues.  Having a teenager in high school is scary enough these days, it is nerve wrecking to have one with this disorder.

My son, 15, told me he was feeling uncomfortable in school.  A girl in his class announced in several places that he was gay.  I knew some of his quirky behaviors could be misunderstood, but I went to the school and made a complaint and it was investigated.

I was appalled at the school's reaction telling me that some of the things he said was making himself a target.  But making the complaint and going to the school did drew a lot of unwanted attention for him.  Some kids thought he was making a big deal out of nothing, and the other thought telling was the right thing to do.

I slightly regretted making an issue with the school, but I had to make sure that if he was going to be a target, I would make sure other kids knew who they were dealing with.  But some of his acquaintances, he thought were friends, turned their backs on him.

Case closed, I thought.  But it didn't.