Guest Post: One mother shares what church leaders need to know about autism

I'm very pleased to introduce you to Emily LeBlanc. Emily and I went to college together 25 years ago (yikes!) and reconnected through the magic of Facebook. She lives in Arkansas with her husband and four children and are members of St. Thomas in Springdale. I asked for her input as the mother of a child with autism to help us in the church get a view from the pew and what many of our members experience day to day. 

Tell us a little bit about yourself and your family.

My name's Emily, and I'm a cradle Episcopalian. My husband, Eric, and I met in college and began having children some years after graduation. We have four children: Daniel, 20, who has high-functioning autism; Catherine, 18; Sarah, 12; and Michael, 10 in December. We live pretty far from family, but that's okay, because we have wonderful local friends. 

How are you connected to the church?

I'm a cradle Episcopalian. Eric's Roman Catholic. We started our marriage going to Catholic Mass, but I went back to Episcopal services when Daniel and Catherine were small and Eric took a hiatus from churchgoing. Daniel's autism was overwhelming and I needed the support of my own church. Since then, Eric has decided that we need to go to the Episcopal church as a family.

When and how did you learn that your son was autistic?

Daniel was four when he received his diagnosis. He'd been having 3- to 6-hour screaming, biting tantrums and did not speak to communicate, although he could repeat things he'd heard, like poems that I'd taught him and lines from television shows. He had started talking normally, but then regressed at 18 months, but it was not at the time of his immunizations. We'd been to any number of doctors previously. We had his hearing tested. We took him to a psychiatrist who diagnosed him with low-functioning autism during a 15-minute appointment, but that wasn't enough for me. Finally, we found a neurologist who took time with him. After an MRI and a few EEGs, he gave Daniel a diagnosis of atypical autism, with periventricular leukomalacia. Basically, he'd had a stroke in utero, which knocked out speech and attention centers in the brain. His neurologist put him on B-complex vitamins and vitamin E, and told us to get plenty of Speech Pathology for Daniel. At that point, Daniel began to show steady improvement. By the time Daniel's symptoms showed up, I was pregnant with Catherine.

How did getting that diagnosis change things for you?

There's a grieving process with a diagnosis of autism; although some people feel relief, I was very sad for a while. The child hasn't changed, but the parents' dreams for the child must change, and that can be very hard. With the diagnosis, however, we were able to access help for Daniel, and we were able to find things we could do for him to make life better. Mary Sheedy Kurcinka's book, Raising Your Spirited Child, helped when I simply couldn't find my kid in other parenting books.  I highly recommend that book to anyone working with kids with either ADHD or autism, to make life a better, simpler thing.

How did you share that information with your church? And what was the reaction?

My church had a good idea that something was up with Daniel at that point.  He was incapable of sitting through a service, and would escape from me and run away whenever he could.  He'd also scream quite often.  I believe I simply told them what the diagnosis was, and the reaction was sympathy.  

In what ways was the church able to accommodate your son’s needs? What would have been helpful?

They let Daniel remain in the nursery long after the age limit for it, which allowed me to sing in the choir, which was my only outlet at the time.  Later, when he gained language skills, he was able to go to Sunday School some of the time, but sometimes, he was too overwhelmed by the sensory stimulation of being around other noisy children to go.

What do you think church leaders need to know about autism and making the church accessible to people with autism?

The world can really be a terrifying place if you can't organize your own brain.  Autism is a spectrum disorder, which means that no two people on the Spectrum have exactly the same condition.  Autism is characterized by language (including body language) and social deficits.  Many people with autism also have sensory processing issues.  Sounds that don't waver much to you or me can be suddenly too loud or too soft to someone on the Spectrum.  For a person with autism, fluorescent lighting can sometimes be frightening-- it buzzes and it flickers, which won't bother a "neurotypical" person, but can distract and possibly upset someone with autism, depending on what sensory issues they have.  Touch is similar.  Some people with autism have no problem with touch, others are bothered by light touch, and still others can't stand any touch at all.  If a person with autism becomes upset, reduce the stimulation by turning off the lights if possible, and don't touch them and speak at the same time.  I like to leave a few beats between saying someone's name and telling them what you want them to do, to give them time to pay attention.  Also, always state what you want them to do in the positive.  Often, they don't hear the first word in a sentence, which is important if the first word is "don't."

Bear in mind T. Berry Brazelton's work on premature infants.  He stated that preemies can't process more than one stimulus at a time.  Especially when someone with autism is upset, treat them as if they had premature brains.  Give them time to process what's going on.  I once had a conversation with someone else's little boy that went like this:  "Okay, (X), when I count to three, I'm going to pick you up.  One, two, three."  (Up he went)  "(X), on the count of three, we're going to walk to the door.  One, two, three."  Anyway, the upshot was I was able to get him outside to calm down but did not talk and act simultaneously.  He had a greater sense of understanding and control, and was able to calm down.

Daniel is simultaneously fascinated and horrified by the organ.  It's really loud and powerful, so he dreams of one day being able to play one, but he finds it difficult to be in church while it's playing, unless he knows the music well.  If he knows the music, it doesn't startle him, which gives him more of a sense of control.  He needs an uncrowded church, where he can focus, although lately he's been sitting in the parish hall to listen to the service, following along in the bulletin until it's time for Communion.  He can't handle incense at all, so we go to a small, low church.

When your son went through confirmation preparation, what helped him? And what was difficult? 

Daniel went to confirmation preparation with one or another parent attending with him, to facilitate his ability to stay.  Often, he didn't make it through a whole class, but our youth minister and priest allowed Daniel to walk around if he needed to, or to stand well away from the other students if that was needed.  They pretty much let Daniel be Daniel.  Sometimes, Daniel would want to pray aloud at inopportune times, and they were able to set boundaries around that, letting him pray when it was a better time and telling him to wait until something specific happened ("You may pray after we do ___") if he needed to wait.  What was hard for Daniel is what is hard for many people with autism:  the classes are language-based, which is difficult if you have a language delay, even if you have a normal IQ as Daniel does.  It is also hard for him that there were many people there.  People with sensory processing problems might need more distance, or time to respond to questions than people without those problems.

Is there anything else you want your fellow church members to know? 

Let's see.  I guess I'd add that having a child on the Spectrum, like anything else, has good days and bad days.  On the bad days, which depending on the disability level of the child can be many, you may not see the parents at all.  On some days, it may even be difficult for them to pick up the phone.  If a family has a child on the Spectrum, especially one with severe autism, it might be really kind to have someone go to the house and offer to give the parents a break, or offer to clean house for them, or whatever talent the visitor feels able to offer.  There can be some pretty strict diets with autism, whether to control autistic symptoms or to control seizures (between seven and 46% of people with autism have them; clearly this hasn't been studied enough) so giving food without checking with the parents first is not a good idea.  However, parents often appreciate practical help.  Sometimes, they may be reluctant to leave anyone other than themselves alone with the child, because they know exactly how hard it is to keep track of the child, who may escape and wander, and/or prevent unwanted behaviors like pica (eating non-food substances) or tantrums, which can be severe.  When Daniel was little, I don't even know what triggered them, but he'd have 3- to 6-hour long screaming, biting, uncontrollable tantrums.  If the parents can't accept indoor help, maybe someone could offer yard work.

Eric and I are really lucky.  The time of Daniel's most severe symptoms has passed.  These days, he takes care of his own physical needs, although he sometimes still needs to be prompted to eat when he's hungry.  He still doesn't know how to seek company when he's lonely, although we're working on that.  Basically, our life with Daniel today is peaceful, even joyful on most days.  Each person with autism is so different, there's no easy formula for understanding them all.  Sometimes, the best you can do is get to know the parents as well as you're able, and get to know the child.  Be patient and accepting with them, and you'll end up with friends who are intensely grateful to you for simple, everyday kindness, which can really be lacking in their lives when the child is very young and just seems to have behavior problems.

Thank you so much for sharing this information! 

Thanks for asking me to help you, Laura.  It's a real pleasure!