“Something’s Just Not Right.”

The Story of My Autistic Son

I gave birth to a beautiful, healthy baby boy back in 1994.  He smiled, crawled and progressed like most children do.  So when he turned three years old, it was time for him to go to pre-school. I was surprised when the teacher came up to me and said, “There’s something not quite right with Jacob. I can’t put my finger on it.” What in the world was she talking about? He was healthy, learning some new words, and played nicely with others.  He was a calm child and never showed aggression. I thought because the teacher was so young, maybe she was just inexperienced. So time went on for a little while. I took him to his doctor time and time again and was always told and he was fine and healthy.

The next year he was with the same pre-school teacher and again, she told me she thought Jacob needed tested. Okay, let’s put this to rest and test him, I thought.  Again, there were some things we needed to help him with, but he’s only four years old! So this is how our life went for some time. Some “experts” said he was fine, some said there is something but didn’t feel comfortable making a diagnosis until he was older.

We pressed forward. Each year a new teacher would comment, each year we would evaluate him. When he turned seven, the professionals were finally ready to start taking a more serious approach. Even then, he was diagnosed with Pervasive Developmental Disorder, Asperger’s Syndrome, Attention Deficit Disorder and even food allergies. We were trying everything to figure out what was going on. It was frustrating and exhausting. We felt like there was little we could do for him.

Finally, by the time he was in high school I found a professional who specialized in Autism Spectrum Disorders (ASD).  He said my son had a high functioning form of Autism. He then looked at me and apologized for all the previous experts, but explained that Autism is very difficult to diagnose and that is why Jacob had a variety of diagnoses. I felt relieved to know what was going on with my son, yet unsure about what I could do for him. This was new territory for us and I didn’t know how to proceed. Of course, the story of my son is much longer, but if you feel frustrated about similar circumstances I wanted to share some resources with you.

So what is Autism Spectrum Disorder?

Here’s how the Center for Disease Control (CDC) defines it:

“Autism spectrum disorder is a developmental disability that can cause significant social, communication and behavioral challenges. There is often nothing about how people with ASD look that sets them apart from other people, but people with ASD may communicate, interact, behave, and learn in ways that are different from most other people. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged.”

The CDC further states, “Diagnosing autism spectrum disorder (ASD) can be difficult, since there is no medical test, like a blood test, to diagnose the disorders. Doctors look at the child’s behavior and development to make a diagnosis.”

“It is important for doctors to screen all children for developmental delays, but especially to monitor those who are at a higher risk for developmental problems due to preterm birth, low birth weight, or having a brother or sister with an ASD.

If your child’s doctor does not routinely check your child with this type of developmental screening test, ask that it be done.  If the doctor sees any signs of a problem, a comprehensive diagnostic evaluation is needed.”

Read more from the CDC about ADS and how to diagnose. http://www.cdc.gov/ncbddd/autism/screening.html

Signs and symptoms http://www.cdc.gov/ncbddd/autism/facts.html

Here is a short screening quiz you can take if you have a toddler you suspect of having ASD. http://pediatrics.about.com/qz/Autism-Screening-Quiz

Here is a short screening quiz for the person suspected of having ASD. You may have to present the questions to them. http://psychcentral.com/quizzes/autism-quiz.htm

If there is someone in your life who you suspect of having ASD please see their doctor for further evaluation. If you have any comments or questions about our experience, please feel free to leave a comment.