Open Hearts, Open Minds, Open Doors

Inclusion in Worship

How can I make my faith community more inclusive?

One Family's Story

Raising three sons with autism and trying to go to church has all kinds of challenges, and gifts, that make our situation rather unique.

Every weekend I am asked the same question.  “Is it a church Sunday?”  My boys, Spencer (13), Joshua (12), and Zachary (10) have asked me this question for years.

This is not the typical whine of children who don’t like sitting still or who would rather play outside.  Our three sons have autism (yes, you can gasp and yes, it’s pretty rare).

Beyond the church environment issue, we have the greater challenge of children who think and learn differently than the rest of the world.  Individuals with autism are concrete, literal thinkers.  They are visual, kinesthetic learners.  They have to see it, touch it and experience it.

Our children struggle to understand another person’s point of view.  They struggle when asked to delve into inner thoughts and depth of emotion.  So as the rest of us continually find new insight and understanding in the same scripture we read years ago, my boys just hear the same words over and over again.

The response of other church members has been lovely and supportive.  When the boys were young, and we were exhausted and stressed out parents, ward members would unexpectedly show up to stay with the boys so we could grocery shop without them.  Ward members volunteered to assist us in our home therapy program.  Over the course of the past 10 years, we have taught numerous classes about autism to classes of women, men and youth at the request of our religious leaders.  We have been unbelievably creative about how and when we attend church.  We’ve had individual Sunday School teachers, classes taught at our home (instead of the church building), visual systems put in place for the whole youth program, and practice sessions on how to participate in the passing of the sacrament.

I believe that every individual should be taught.  My family and I will continue to encourage and teach our sons as best we can, within the parameters of their learning ability.  The boys have been baptized, will pass the Sacrament and perform sacred duties as they can.  But their participation will never be exactly like everyone else. When Joshua was getting ready for baptism, (which is done at the age of 8 in our church) he was convinced that there were sharks in the water, so he refused to be baptized.  His interview with our bishop was rather entertaining and he kept saying “But there are lemon sharks in the water!”  Joshua struggles with sensory overload, so there are some days when the sound of the organ makes him want to hide under the pew.  Zachary doesn’t like the “quiet” silence of the Sacrament being passed, so he wears headphones and listens to music.  Spencer struggles to learn by listening alone, so religious instruction for teenagers may have to happen at home.

In the end, we have decided that we bring our children to church in the hope that they feel the spirit somehow.  And that our sons will know another “community” of people that love and care about them.  Our priority is not to teach scripture, doctrine, or obedience to tradition.  But to teach the power of the Savior’s love.

Practical Strategies for Family and Clergy

1. Be realistic about expectations.  If religious services are too long for the child, find an appropriate time to leave. When the boys were very young, we worked for months to stay 20 minutes of service—long enough for us to have the sacrament.  When our youngest was learning to tolerate the youth services, we rewarded him for simply walking into the room with the other kids.  Eventually, he stayed almost 25 minutes with the other children.
2. Provide a visual schedule of the service.  There are a variety of clipart and other pictures that can be used to structure the activities for the child with autism.  We used a file folder with Velcro and had pictures to indicate song, prayer, talking, scripture story, etc.  The adults who ran our children’s program had large copies of the pictures that were on the board in front of all the children.  Each child who needed an individual schedule was provided a smaller version to follow.
3. Provide alternate activities for the child.  Children with autism are easily overwhelmed by their senses.  We provided a basket of sensory toys during the main service and during the youth service that children could use for calming.  We used headphones with music or books on tape for our boys to wear during the difficult moments.  We also created a variety of activities (word matching, coloring, drawing, etc.) in file folders that were then put in a “Sunday Book” to use during the times it was difficult for them to pay attention auditory.
4. Awareness Presentations We highly recommend a presentation of some sort to the other members of the congregation that discusses the basics of autism, and what efforts are being made to support the children at church.  Most people want to help, but don’t know how.  We had quite a few instances where members of our church would approach our boys during a meltdown and put their arms around the boys or hug them.  This was the worst possible, but natural, reaction to have!  When we discussed this with others, they understood the appropriate way to support us during the difficult moments.
5. Visit the church building at times other than Sunday.  We often have other activities that take place at our church building, and it was difficult at first for the boys to make the mental shift in behavior.  For example, sometimes a Halloween party is held at a church building.  Children with autism think they are going to have to sit still—not have fun!  And then the next Sunday, they want to run around the building again instead of sitting still!  So we used a visual structure to show them what behavior would be expected during our visit to the building.  Although this was initially stressful, eventually the boys learned that church was a place of fun and learning.
6. Practice prayer and scripture time at home It is easier to teach the proper behavior for prayer in short, calm moments at home. 

Zach’s story

Our son Zachary is challenged with lots of autism.  Since the onset of autism at the age of 16 months, he has struggled with language, aggression, sensory integration, and many other challenges too numerous to mention!  Sitting still has never been his favorite activity, so attending church was very stressful for him.  However, over the course of the past 8 years, we have worked to support him in our religious environment.

What it looked like

When Zach was 3 years old and very anxious and frightened, my husband and I made the decision that Zach and I would not attend church at all.  This was a very difficult decision for us, since we believe that attending church every Sunday is an important way to renew our covenants with the Lord.  But Zach was unwilling to sit for more than 3 minutes, or even go into the building, so we felt that I could use those hours on Sunday in a more useful manner.  My husband and other 2 sons struggled through church, and Zach and I stayed home and worked on language.

When Zach was 6, we felt that he was ready to tackle church.  We met with our clergy and youth leaders and brainstormed with them some ideas we had for supporting Zach at church.  They were amazingly supportive and we moved forward.  We asked a woman in our congregation to be Zach’s personal Sunday School teacher.  She did not have a background in Special Education, but did have a background in teaching, and more importantly, the desire to serve Zach. 

We began with having her come to our home to teach Zach.  This was relatively easy in our situation since we lived only 5 blocks from our church building.  We had been utilizing a room in our home as a therapy room, and that’s where she and Zach met.  She and I had a meeting prior to their first Sunday, and set up a schedule, discussed activities, and time frame.  Initially, none of the activities they did were religious in nature—they were Zach’s preferred and familiar activities like watching Thomas the Tank engine videos, doing sight words, color blocks, etc. 

The first Sunday was traumatic for all of us.  Zachary was not thrilled about dealing with a new person, I sat at the top of the stairs listening to him scream, and I think our teacher wondered what she had committed herself to!  By the 4^th or 5^th Sunday though, Zach was much calmer, and so were we! 

Our teacher was leaving one Sunday when she turned to me and said, “I’ve had inspiration about what I am to teach Zachary.”  “Oh really?”  I said.  “Yes, I’m not supposed to teach him anything.  I’m only supposed to love him.”    This simple statement moved me to tears, for it was exactly what we wanted for Zach.

After 6 months, we felt that Zach and his teacher were comfortable enough with each other and the routine for the next phase.  We moved them both to the church building.  We were able to have our own classroom, and they met for the first 30 minutes of Sunday School.  This was a leap of faith for our congregation as well, since they could hear the sounds of the Thomas the Tank engine video coming out of the Sunday School room!

Another 6 months and we began to work on Zach going in with the other kids.  We accomplished this with small, steady steps, based on his interests and lots of rewards.  For Zach, this meant music.  Zach loves music, so his teacher had taught him to sing one of the simple youth songs with hand movements.  We worked with the youth leaders, and spoke with the other children.  Every Sunday, as soon as Zachary walked into the youth room, the other children and leaders stopped what they were doing (even in the middle of a scripture) and began to sing Zach’s song!  It was really funny—but worked great!  We then rewarded Zach with his favorite cookie for simply walking into the youth room.

We’ve had other children with autism in our congregation who have not needed this amount of support, but who still needed “breaks” during church, sensory input, and one-to-one assistance.  Each child is different, but the basic principles still apply.

What it felt like

The result of all of this work went beyond just support for Zach.  The whole congregation has learned to view “bad behavior” differently and support all individuals with disabilities more.

The key to Zach’s success was the communication we had with his teacher and the other youth leaders.  Everyone was truly exhibiting Christ’s love as they worked with us to support and love Zach.  There were many “difficult” Sundays, but the feeling of community and commitment was strong for everyone.

As of today, Zachary sits through the whole Sacrament service with us, with minimal prompts and breaks.  He is able to sit with the other children for almost 20 minutes, and then he and I go home.  But it is enough time for both of us to feel the love of our fellow members and God’s love. 

By Alyson Beytein