Autism Awareness Month: Jay’s Story

On April 1, the Little Nell ski run in Aspen glowed blue for Autism. It joined the Empire State Building in New York, the Willis Tower in Chicago, the Kingdom Tower in Saudi Arabia, and 1,800 other global locations were bathed in blue light for World Autism Awareness Day (WAAD), kicking off Autism Awareness Month.

What is Autism?

Autism and Autism Spectrum Disorder (ASD) are general terms for a group of developmental brain disorders. These disorders manifest themselves in different ways, including difficulties in social interaction as well as verbal and nonverbal communication, and repetitive disorders. While ASD can be associated with intellectual disabilities, some people with ASD excel in visual skills, music, math and art. The brains of people with ASD handle information in unique ways. Since the disorder exists on a spectrum, it is not always recognized, leading to misdiagnosis and inappropriate treatment, a fact known all too well by thirteen year old Jay and his family.

Jay perceives more of the world than others. He can feel thread count, sock placement, the differential weight of blankets, and the certain way pants sit on his hips. If he senses a difference in a certain sensory stimulant, it bothers him. He can’t leave the house, can’t sleep, or engage in life until it is fixed. And Jay has always been intense, first seeing a psychiatrist at age two, he then participated in an ADHD study though the University of Arizona, as well as a study through the National Institute of Health. He’s been diagnosed with ADHD, anxiety, Oppositional Defiant Disorder, Bi Polar Disorder, and mood disorder, but no diagnosis fit exactly.

His parents searched for answers from a range of medical sources, but it wasn’t until a turn of events that sent Jay to the emergency room with dangerously low blood pressure that the truth was finally revealed. Jay was on a lot of medicines and in an attempt to wean him off of some of them, his parents consulted a nutritional psychiatrist. He was put on the amino acid Taurine which helped, but his impulsivity was still severe. His regular psychiatrist put him on an ADHD medicine, which brought on mania. Removed from the ADHD medicine, he was given the blood pressure medicine, Intuniv, which is used with ADHD patients. The combination of the Taurine and the Intuniv dropped his blood pressure to the dangerously low level of 60/30. Although the medical professionals knew all the drugs and supplements administered to Jay, they didn’t foresee the likelihood of very low blood pressure.

It is scary to come so close to losing a child. However, the silver lining for Jay’s family shone brilliantly. As Jay recovered, his mom started looking for other solutions for his impulsivity. She asked their psychiatrist to refer Jay to day treatment at The Children’s Hospital in Aurora, Colorado. Within three days, pervasive scales were run that indicated Jay needed a full evaluation for Autism. He was moved to the Autism unit and within a week, Jay and his family were given a diagnosis that finally made sense.

As his mom states beautifully, “suddenly this very complex 13 year old kid with a mood disorder and a host of other diagnosis was this very typical Asperger’s kid on the Autism Spectrum.” The Autism interventions and therapies worked wonders and evened out Jay’s moods, anxieties, and sadness. The lovable Jay his family once knew returned and he was liberated by the freedom of knowing he was understood and could be assisted. Jay is now in a school for high functioning Asperger kids just like him. He’s involved in a social skills group therapy program that is helping him learn better social queues and more appropriate behaviors. His parents installed a swing in his room which helps him modulate himself and gives him the power to unwind. In every way, it looks like Jay is finally on the right track.

Autism in children is being recognized at increasing regularity. According to the CDC, one in 88 children are diagnosed an Autism Spectrum Disorder. Jay’s mom encourages parents to keep looking for answers for their kids. And if they suspect their child might have ASD, to call the Children’s Hospital Autism unit and ask to have their child evaluated for Autism. Earlier intervention is key, but it’s never too late to find the truth. Just ask Jay.

Special thank you to Jay and his mom Kathleen for sharing their story.

 

Jennifer Smith-Daigle is a stay-at-home mother of a third grade daughter and twin kindergarten boys. She and her boys are survivors of Twin to Twin Transfusion Syndrome, being some of the first 200 people in the United States to be cured by Fetoscopic Laser Ablation surgery. Jennifer’s life before kids included world travel, historic preservation, and archaeology digs. When she’s not busy with a house full of kids and enough mammals to constitute a small zoo, Jennifer finds freedom in freelance writing, martial arts, and gardening.