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Autism tolerance, compassion and tips to help kids sit through Mass

While writing the story on children with autism preparing to receive their sacraments for this week's issue, I was very anxious. I'd spoken to so many people with a passion for their work with special-needs children and with their faith formation that I wanted to make sure I accurately represented their struggles, their needs and their joys. Even in the 1,500-plus word resulting story (trimmed from thousands more worth of notes), I felt like there was much that I didn't have room to include or some things I wanted to emphasize more.

The first is the desperation that Joan Shannon felt when she thought her son Thomas might not be able to make his first penance and first Communion.

"I didn't see it happening," she said. "His … language just wasn't progressing on a trend that (would enable) him to make his first Communion in the next few years."

While she undertook the one-on-one catechesis with Thomas, she recognized that many parents, especially those with numerous children or more than one with special needs, simply don't have that luxury.

"Who's taking care of our disabled kids?" she said. "It falls under no one's umbrella except the parents and the parents need help."

Joan and Joanne Donahue, the catechist from St. Louis Parish in Alexandria, both talked about the difficulty of bringing children with special needs to Mass.

As the mother of a learning disabled son also, Donahue knows that the parents struggle with public judgment - even in a church setting.

"I had parents looking at me like, 'Can't you keep this kid quiet? Why can't he sit still?'" she said. "He looked totally normal, yet he had a difficulty. When you look at an autistic child, they often look normal, but then they start to act abnormally."

And that's when others can look "askance" causing parents to sit in the back of the church, skip out on receiving the sacraments themselves because they are caring for their child, or not even bring them to church at all.

"An hour is a long time for a child with autism to sit and be quiet," Joan said. But "no family wants to separate for Mass."

To help keep autistic kids attentive at Mass, Joan offered these tips:

1. The key is to make Mass attendance a positive experience.

2. What frequently works is initially attending Mass for only a short while, gradually extending the time and getting a treat afterward. Building up to the full Mass may take two to three years.

3. Depending on the student, one may want to start with the first few minutes of Mass and work forward, or the last few minutes and work backward.

4. Consider bringing toys (but not ones that make noise), giving stickers at intervals for sitting quietly, and choosing a seat that will allow for taking breaks or making a quick exit.

5. Consider using headphones for the quietest times of the Mass and allowing the child to listen to soft, calming music.

6. Consider bringing a special "church" bag that includes special items that are only available to your child when attending Mass.

7. Try different areas of the church for sitting. We have sat in the very back pew for years but now find that it can be helpful to move up.

8. Very gradually, you may drop some of the "supports" that enable your child to participate in the Mass. We have found that familiarity breeds success. Our child knows what to expect, how long Mass lasts and even that going to Communion means it's almost over.

Nancy Thompson from the NCPD suggested parents put together a Mass book for their children (downloadable for free from ncpd.org) that would enable children to use photographs to see what's coming next during the Mass. The ritual-heavy Catholic Mass is perfect for such a project, and the more individualized (such as using photos of the child's church and pastor) is recommended. That way, the child can familiarize him or herself with the routine of the liturgy and be confident that he or she knows what to expect.

"That can be a very helpful technique to employ so that they are able to prepare for what's coming next, and then be able to participate in the way that they've come to understand they need to participate at that time," Thompson said. "Part of that participation is putting the picture in the book."

Thompson also recommended "backward chaining," or teaching a child with autism to be comfortable in a situation by working backward and always "ending with success."

For example, she said, if a church had coffee and donuts at the end of Mass, start there. Then perhaps go for the final blessing and coffee and donuts, then for the Communion procession, the final blessing and donuts.

But "you don't want to push too far too fast," she said. "It takes a lot of repetition and practice."

Mostly what I took away after writing this article is how important it is to be tolerant of those around us. You never know what another family is struggling with, how tired they are and how the weight of the world seems to be on their shoulders -- and theirs alone. Compassion is the key to being supportive.

Most importantly, Joan said she wants special needs children to be "visible, not invisible" to the members of the community.

"If they don't see them, they don't know them and they can't know their value," she said. "Sometimes we learn the most from the weakest creatures. These children are gifts to us."

© Arlington Catholic Herald 2011