By Christie Mitchell Atkins
Like many moms of special needs children, I have noticed many similarities between the “shelter-in-place” blues that people have experienced since the onset of Covid-19 and the “new normal” life that we have lived after learning our children’s diagnoses.
Some friends have asked me to compare these experiences. I have hesitated to write, because I do not want my intent to be misunderstood as a complaint. Ultimately, I decided to go ahead, because my observations might give others a glimpse into our daily life with autism.
To understand how autism changed our world, one must understand about the disability. Autism is a group of conditions that can affect the five senses, inhibit expression and receptive communication traits, cause repetitive behaviors, and produce high-level anxiety. In varying degrees, the person’s ability to communicate with others is affected. If both expressive and receptive language are impaired, as with my son, the person can grow extremely frustrated when well-intentioned strangers ask various questions in an effort to be friendly. When the person doesn’t understand the language but realizes that he’s expected to provide some kind of response, the frustration can cause all sorts of negative behaviors and even meltdowns – that is, extreme tantrums expressed through yelling and turning away from all others. Sleep disruption, overstimulation, excitement, and scary or intimidating circumstances can intensify these behaviors.
A person may handle a challenge fine one time, then have a meltdown when the circumstances seem identical to most people but with a difference that seems frightening or threatening to the person with autism.
So, when parents of individuals with autism plan for an outing, such as a quick trip to the grocery or the drug store, they must plan ahead for any possible stimulation of their child’s senses. Will the lights in the store be too bright or too noisy? Will there be background music in the store? What if the store has just been cleaned and the odor of pine or disinfectant remains in the air? What if the air conditioner blows on the child’s skin while waiting in line to check out? These thoughts and dozens more race through our heads at the thought of just running out for a loaf of bread.
For someone with autism, remaining safe in one’s cocoon feels much more secure than going out and experiencing something new. One can almost see the thoughts running through the mind of someone who can’t communicate his needs: What if I can’t tell them I have to go the bathroom? What if I get thirsty? What if something doesn’t smell right? What if the lights scare me? What if it thunders? What if someone strange or threatening tries to talk to me?
Any of these circumstances can produce a melt-down. We quickly learned the best way to help a person with autism deal with the unknowns and surprises in life is through routine, structure, and repetitive behaviors.
Our sons and daughters discover places where they feel the safest. Home is usually at the top of the list. Church can be another haven for some of our kids. At times, a grandparent’s home or a specific restaurant might make it to the list of sanctuaries. But not only do our kids want to be in their safe places, they want to be with their safe people – their interpreters to the world.
Yes, we have to try to broaden the world for our loved ones. Because there’s a very delicate balance between when a caregiver can push forward and when to allow calm to prevail, there are limits on where to take a person with autism, or in which social activities a family can be involved.
Added to these limits is the fact that kids with autism usually have compromised immune systems. A large subset of these individuals, like my son, have scant resistance to common bugs and viruses. Before my son was five years old, he had been diagnosed with over fifty ear infections. If he is exposed to a germ, he usually catches the illness. He is sicker than most with the ailment, and the bug can last quite a bit longer than it would for most people. It is not unusual to hear of an illness going around a certain part of town, a business, or church and to respond by keeping a person with autism at home to keep him from being exposed.
In a nutshell, life with autism is totally unpredictable. We’ve found that it’s easier to stay home and keep your loved one calm than to run to the card store and pick up that birthday card you forgot. It’s less stressful to stay in and watch a movie on TV than attend a loud sporting event, go to a concert, or make a trip to the mall. It can be better for the family to have grilled cheese for dinner than to have to run out for the lasagna noodles you forgot at the grocery.
It can be better for the family to have a game night than for mom and dad to go to a party, or have a date night, especially if an outing means leaving your special child with a sitter who does not know how to interpret the world for them. It is hard to make commitments with any regularity. Even seemingly simple service, like volunteering to visit a hospital on Saturdays, would be really hard to do. As a parent, you never know what issues might throw the household into total turmoil – if the news pre-emptied a favorite show, if a loud thunder storm roared through the town, or if his computer stopped working for some technical glitch, your child might need the security of your “being there” to help him find his calm. A parent stepping outside in the yard or even leaving the room at the wrong moment can cause total distress for our kids.
When facing the choice between keeping your child in a stable and secure environment or attempting something that might incite a meltdown that could overwhelm the family for several days, it becomes much easier for one family member alone to run to the store or attend any activity while the others remain “safe-at-home” with the person with autism.
So, when my son received his diagnosis of autism many years ago, our lives’ journey sharply changed paths. I went from frequently hosting friends and my husband’s college aged students in our home to, basically, living as a hermit. The pendulum shifted from attending as many church services and events as possible to being grateful for live-streaming worship services and inspirational Facebook posts.
Once, shopping for groceries, clothing, and necessities was a weekly joy; now it became too complicated to wrap my brain around. Trips became so tiresome and tedious to prepare for. Too often, an eagerly-anticipated family trip ended up as sitting with our son in a hotel room because he could not handle the stimulation. Once we enjoyed traveling; now, the joy of looking forward to a fun-filled, family vacation has disappeared.
So, families with autism already live the lives of “shelter-in-place.” We’ve learned that it’s best for our children to have one designated person at a time leave the house while the others stay at home. For the sake of our beloved kids, we avoid crowds and places that would over stimulate the senses. Our worlds become very small, and our homes become our little kingdoms. The difference is that, instead of being told one day to stop going out, we were slowly eased into our isolation as we were trained by our children to learn would best meet their needs.
No, the orders to stay at home have not been hard for me in the least. I miss seeing my daughter, my students, and my church family, but we and other special-needs parents have long had to set aside the other social events that everyone is now yearning for. We are not martyrs or heroes. We are not bitter or feeling sorry for ourselves. We choose to take the path that is in the best interest of our children – just like most parents would. Many have written books that tell this story so much better than I ever could. I just hope that these short remarks address the welcome curiosity of those who might be interested in learning more about life with autism.
Bio: Christie Mitchell Atkins was born and raised in Middle Tennessee. She graduated from Lipscomb University, Nashville, in 1983 with a degree in mathematics. She later earned a Master’s Degree in Administration and Supervision from Trevecca University. In 1989 she married Jonathan Atkins. Two years later the couple moved to Rome, Georgia where Jon continues to teach history at Berry College. Christie is a mathematics teacher at Darlington Upper School, also in Rome. In her spare time, she enjoys reading, crafting, shopping, and watching Hallmark movies. Christie and Jon are the parents of two adult children.