Sometimes the signs of Autism Spectrum Disorder (ASD) are subtle – developmental delays or not smiling or cooing as much as other babies. Sometimes the red flags are hard to ignore, such as losing speech, a lack of eye contact or lining up toys or pieces of food. According to information provided by Autism Support of Central Illinois, while many parents fall into the “wait and see” camp, half of all parents of children with ASD noticed symptoms by the time their child reached the age of 12 months, and between 80% to 90% noticed by the age of 2 years. Other signs of concern include avoiding social behavior, lack of response to their name, clumsiness, aggression and regression of any kind, such as losing speech or social skills. Not every child with ASD will have the same symptoms, and the autism spectrum is very wide, with a range of low- to high-functioning.
Deanna Planitz, a board and staff member for Autism Support of Central Illinois, based in Springfield, said that she chalked up the developmental delays of her son, Jordan, to his many health problems when he was young. Jordan’s neurologist encouraged Planitz to have him evaluated.
Another parent, Nicole Horner of Pleasant Plains, said that when her son Jaxson lost speech after the age of 12 months and began to line up toys and Cheerios, “I knew. I just had this ‘mom gut’ that I knew.”
It’s critical to have your child evaluated in a timely manner. When intervention is started while the child is young, it is much easier for kids on the spectrum to gain skills to cope and even thrive in a neuro-typical world. In Springfield, diagnostic services are available through the Autism Clinic of Hope, though there is a waiting list. Otherwise, parents can (and often do) travel to Champaign, Peoria, Chicago or St. Louis to find diagnostic help.
If a child is found to have ASD, services are put into place that may include speech, occupational, physical, aqua or equestrian therapies. However, one of the most useful tools parents can access is Applied Behavior Analysis (ABA). ABA therapy is tailored to each child for their specific behaviors and needs, and can be effective, especially when begun at a young age.
Of therapies, Horner said, “I had to get him into that stuff, and if I didn’t, he wouldn’t be where he is today at all.” Her son has made tremendous progress, and at age 5 has learned to read and write, improved his fine and gross motor skills and has learned to communicate with the help of an autism communication device.
Despite the therapies and tools available, it is not always easy for parents to adjust to a diagnosis of autism. Planitz explained, “Once I got that diagnosis, I went into a state of depression. It was as if I had lost my child, and I was grieving. The hardest part of accepting the diagnosis is the fact that your dream for your child died that day, and you’re not going to get it back.”
Support groups can help parents through this transition, either online or in person. Behavioral Perspective Inc., which specializes in offering ABA therapy, is beginning a parent support group that will meet on the fourth Thursday of each month from 6-7 p.m. at the Springfield office. Networking with other parents at support groups provides a chance to make friends, share experiences and get recommendations of products and services.
Education is key, asserts Planitz. With 1 in 58 children diagnosed with ASD, “Kids can’t be hidden or in a bubble because people are uncomfortable with it. They have a right to be in the community, and we have a right to go places and do things. People need to be educated. And learn. And help!”
The easiest way to help a family in distress is simply to ask, “How may I help?” Patience and understanding go a long way in integrating kids with ASD into society at large and to help families feel they can leave their isolation and be included in society.
For more information, contact Autism Support of Central Illinois (autismcil.org) for a wealth of resources, free events and networking opportunities.
Carey Smith is a writer, gardener, Earth poet, and mother to two children, one of whom is on the autism spectrum. She and her family live in Springfield.