My son is 11 years old. He is a talented artist, poet and comic strip designer. He knows probably everything there is to know about Pokemon. He loves animals. He has Autism.
In the very early days of my son’s life, he seemed no different from other newborns. He looked and acted like a normal infant. However, after an early round of shots, things seemed to change. A cry that at first I took to be the fussiness and discomfort that often follows childhood vaccinations seemed to last even after infant pain reliever should have removed the discomfort. He cried, a frantic high pitched cry, for hours at a time although nothing was wrong with him and all of his needs were met. He didn’t want to be held. He didn’t want to be swaddled. In fact, other than being fed and changed, the only thing he wanted to do was bounce. As soon as I stopped moving, he started crying. Two months later we figured out how to prop him up safely in a Johnny Jumper and he would happily jump and coo away the hours. I guess all the lower leg activity paid off, because by 6 months, he was walking. By 9 months he was running. He often ran straight for the legs of my dining room table, falling backwards when he hit, only to begin the process again moments later. Later, he discovered the joy of climbing on an end table and throwing himself off of it onto the floor. Try as we might to stop him, he took advantage of every opportunity to climb, bounce, hit and fall. I wish I had known then that those behaviors and others such as being resistant to physical affection like cuddling or hugs (something professionals call tactile defensiveness) were signs of sensory problems.
As a toddler, his tantrums were frantic, difficult to predict, and lasted for hours. He began to have marked issues with maintaining normal eye contact. The pediatrician told me it was just his personality and he would grow out of it. However, two years later, my son was still displaying worrisome behaviors. He screamed that lukewarm bath water burned his skin. His conversational and relationship skills lagged. He became fixated on small things or parts of things and even began stealing. I took him back to the doctor. This time the doctor suggested I put him into a young 4’s program at the local school so that we could monitor his behavior in the classroom. At a pre-school screening, he was diagnosed with sensory integration dysfunction – a diagnosis that occurs almost exclusively along with autism spectrum disorders. We were given books on Sensory Integration Dysfunction and taught how to do therapeutic brushing and other Occupational Therapies to help his nervous system learn to communicate better. I felt hopeful that someone was finally listening to me and wanted to help my son.
In school he continued to steal, push, and exhibit other problematic behaviors. However, each time a behavior of concern showed itself, his teacher would say that she was sure he would grow out of and that she saw no reason for concern. That trend would continue for the next 5 years. At the beginning of each year, I would send the teacher a personal note, letting them know that my son had Sensory Integration Dysfunction and asking for their help in communicating with myself and my son’s doctor so that we could better help him. But again, no matter what my son’s behavior, no matter how many times he was spoken to in class, issued a demerit, or suspended, his teachers said he was “just a boy” and he would grow out of it. By 4th grade, he was still pushing in line, wiggling in his chair, standing up for tests, having screaming outbursts at fellow students during group work time, blurting out in class, having occasional outbursts directed at his teacher, and was developing a facial tic as well. I can’t express how relieved I was when a chance meeting with my son’s teacher in the school hallway revealed that he had concerns about my son as well. He agreed to fill out the doctor’s questionnaire and work with me to get him the help he needed.
Back at the pediatrician’s office, I was automatically handed an “ADD/ADHD” questionnaire to fill out for my son. Many of his behaviors were not listed. I filled out the form and talked to the doctor. After looking at it, the pediatrician avoided giving a diagnosis, but suggested trying an ADHD drug to help with the ADHD-like symptoms. Diagnosis however is the magic word when it comes to getting help for your child. After an initial adjustment period, the medication seemed to help with the worst of his issues, but it didn’t help with all of them. We tried to get him into a psychiatrist who could correctly diagnose him and was more familiar with the type of medications he was on. All of the clinics I called required that my son see a counselor at their facility before being referred to the staff psychiatrist. For months, our family struggled to come up with the $200 a month it took to send my son to his counselor, in hopes that he would soon receive the referral he needed. However, even after many requests, no referral was forthcoming and we were finally forced to cease his visits.
In spite of all my attempts at getting my son help, it wasn’t until my son had a violent breakdown that endangered my other children and ultimately landed my son in a psychiatric hospital for a week that he finally received his current diagnosis, Pervasive Developmental Disorder (PDD), an Autism Spectrum Disorder that is generally higher functioning than classic Autism but less so than Aspergers. Now, armed with a diagnosis, I am finally able to get my son the occupational therapy, academic supports, and other services that he needs.
