Tuesday, June 23, 2009


My son, Nerd Boy, 11, has Asperger's Syndrome (Syndrome NOT Disorder - as he told his psychologist and everyone else for that matter. "Disorder implies that there is something wrong with you. There is nothing "wrong" with Aspies, their brains just work differently." )

Nerd Boy, in addition to AS, is Profoundly Gifted. This masked the Asperger's for years. He was not officially diagnosed until 9, but looking back ALL the signs were there. Every doctor’s appointment, I would question things that he would do, always to the same response…he perfectly healthy just quirky. I can not tell you how many emails I sent to his teachers asking if certain things were "normal"...the response was always that he is just exceptionally bright and quirky...a genius thing.

His Asperger's was diagnosed in third grade after he started to have breakdowns (silently crying, staring off into space, monologuing, pretending the world did not exist, talking to himself, depression, shutting everyone out) in class and go off into the world he creates in his mind; a world of magic, dragons and fairies.

Things I noticed over the years:

  • He never cried, ever, until he reached 3rd grade. Not even as a baby.
  • He did not play with toys; he lined them up, obsessed about them and collected them.
  • He did not have back and forth conversations until he was quite old; he repeated large passages from book that had been read to him or scenes from TV.
  • His memorization was unbelievable. His speech was very sing song. He never looked other people in the eyes.
  • He had a ton of sensory issues.
  • He was very physically uncoordinated; 6 months with a batting coach twice a week and he never learned to hit a ball. He held scissor backwards. (I have no clue how he can do that, it hurts!)
  • He did not learn other children's names until 3rd grade, even though he had been in school with the same kids since Kindergarten.
  • He called things as he saw them, so one girl was Bossy Girl, a boy was Tall One, etc. He did not play or interact with other children; he walked around talking to himself about the worlds he was creating.
  • He was very literal; saw everything black and white, right and wrong. He would NEVER break a rule. I remember once asking him to go up in the tubes in BK to get his brother because it was time to go and Monster Child was not coming down. He would NOT do it because the sign said for children 48" and under and he was 50". I had to get a manager to tell him that it was OK.
  • He would do an entire group project on his own rather than having to work with a group.
  • He obsessed over dragons. He could tell you every myth/belief/legend ever told about dragons in detail.
  • He never got jokes or innuendo.

Looking back, I have no idea how we missed it. Mind you, even though he had all these issues, he was a very, very loving child, a straight “A” student, regional science fair winner, prolific writer and generally wonderful kid. I tell people that Nerd Boy would give you the shirt off his back, if he ever noticed that you needed it, but in all likelihood he would never notice.

My mom had suggested to me once that maybe he had Autism. No way! I thought of Autism as Dustin Hoffman as "Rainman" I had never even heard of Asperger's until his school requested an IQ test at the end of 3rd grade, to see if he qualified for placement in a Highly/Profoundly Gifted, self contained classroom. They thought it might be a better fit for him.

He scored Profoundly Gifted, but the testing threw up quite a few red flags for the psychologist. The psychologist suggested repeatedly I have Nerd Boy evaluated by a clinical psychologist who specialized in Pervasive Developmental Disorders. I did, and a developmental pediatrician and a pediatric neurologist. Now we have our diagnosis, Asperger's.

I am so thankful that we agreed to let him be tested. Without the help of the district psychologist and his recommendation for further testing, I don’t know where we would be now. Nerd Boy was starting to completely shut down. With the help of our school, his pediatrician, a wonderful psychologist and a lot of others, he has made amazing strides this past year! He is still quirky, but that is just how he is.

Our goal is not for Nerd Boy to “fit” into society, but to be able to comfortably, effectively communicate (in a positive way) to the extent which he desires.I love his quirks. I would not change a single thing about him. I just want him to have the skills and tools that will enable him to change, modify or adapt when and where he wants to.

1 comment:

Rebeckah said...

I am the grandmother of an almost 6 year old with classic autism and feel like I have Asperger's myself. I think it is awesome that you are seeking help to train your son to interface with others while trying to protect his unique self. You are to be commended for your understanding. We face the same issues with my grandson Aidan. He's sweet, loving, smart and just needs a lot of help with social skills and communication skills. (He loves to memorize too, and we have more than a few "conversations" that are recitals movies or books he knows.) Keep up the good work, wonderful mom!