Friday, June 10, 2011

Religion and Autism

These two essays were originally published in the Autism Society's magazine, the Autism Advocate. While the references here are for the Christian and Jewish faiths, many of the tips could be applied to other religions. We've had several posts in the last year about autism and religion, but we are always seeking to add diversity to our knowledge base. If you have an experience you'd like to share about faith, community or religion, we'd love to hear from you please contact us.


                                               -The Editors

The Christian Perspective
By Terri Connolly

The church experience is often one of generational tradition for many families. Other families recognize their need for a place of spiritual refuge and nurturing for the first time in their lives when they have children or at other trying times.

Christ's example of "agape," or unconditional love, is paramount to our understanding of the role of acceptance in the church. Too many parents and siblings, as well as the individual with autism, are asked to leave or feel so uncomfortable that they lose this most precious part of their lives, and at a time when they are most in need.

The behaviors associated with autism often present challenges for the family church experience, yet I often find myself wondering: "If not church, then where can an individual be accepted exactly as they are with unlimited love and inclusion?" Families of faith need to find a church where all of its members can be nurtured. By integrating the individual with autism as a regular member of the church, with resource help and community-wide education, the church becomes accessible to the whole family, and the family, in turn, is strengthened through shared faith experiences.

Tips to Supporting Inclusion
  • Initiate contact. lnitially, parents may want to contact the pastor or Sunday School teacher to introduce themselves and prepare them to provide a successful experience for everyone. Include information about educational goals and discuss communication methods.
  • Discuss your expectations. When attending a worship service, it would be wise to discuss with the worship leader what he/she might expect. In return, the worship leader should offer supports to the family, such as someone to stay with siblings should the parents need to leave during the worship service or to accompany the individual with autism to another comfortable place should he or she become distressed.
  • Be prepared. Most experienced parents know that all children and many adults become fidgety during church. Being prepared with a quiet object of concentration, such as a rubber band, pictures, books, or an object of visual focus, can be very helpful, particularly if it has religious significance to enhance the worship experience in a different way. Items that provide comfort and security at home might be made available at church.
  • Get acclimated. Since it is thought that many individuals with autism experience things holistically, attention should be given to the sights, sounds, and even smells within the sanctuary or classroom. A visit to the sanctuary and classroom in a church when they are empty might give the individual an opportunity to explore in ways that might be inappropriate when crowded. With special permission, one might also explore the organ or piano to prepare the individual for the sudden and sometimes loud sounds during worship.
  • Teach by example. The worship leader may comfortably acknowledge any distracting behavior with a simple, sincere acknowledgment. "So glad you could join our worship today, Tom," after which the worship leader continues as if Tom's participation is perfectly natural. The worship leader's acceptance is very important. Sensitivity and joint strategy planning are critical.
  • Develop peer partners. In order to help relationships and friendships blossom, peer partners who rotate responsibility for assistance can help to create a wide base of support for the individual while fostering a truer atmosphere of inclusion.
  • Help the individual feel welcome. Several adults or children should assume quiet lay leadership roles by greeting the individual with eye contact, a "Hi, Bryan," a high-five, a popular stylized handshake, or a pat on the shoulder. It is often this simple, yet critical initiation that communicates the gospel message. A kind of "underground" effort of greeting creates a wonderful atmosphere of acceptance.
  • Stand firm. Finally, the family should stand firm in their belief that we all have a place in the worship experience. When one member is missing, the experience of all is diminished.
Younger Children and Sunday School
In being part of the community of faith, all individuals need the opportunity for active participation. Doing what others do promotes a feeling of inclusion. For children in Sunday School, the following ideas have been successful:
  • Use the Bible. Encourage the child to hold the Bible open to the appropriate page. Use a bookmark or guide the child's hand to follow as others read aloud.
  • Ensure participation. Pass a ball or talking stick while sharing or learning parts of a memory verse. The child with autism is then assured a chance to participate with the help of another to communicate the message. A notebook from home could tell about experiences and add prayer requests, if necessary.
  • Rotate buddies. Remember to encourage multiple friendships and acquaintances by rotating peer escorts and buddies.
  • Use visual cues. Use extra visual cues, such as pictures, during a story at any age level. Quietly reword a story as needed so that it is understandable to the individual.
  • Encourage imitation. Encourage, but do not force, imitation of body postures, such as bowing one's head and clasping hands for prayer, standing to sing, and looking toward the person who is speaking. This will certainly vary with the individual, but it helps to create an attitude of prayer and participation.
Older Youth and Participation
Older youth and adults with autism can participate partially or fully in different ways, just as most youth and adults without autism. Encouraging participation and service to others is important for the individual as well as the community.

The following suggestions are based on the approach that was used with a particular individual with autism:
  • Greet people with a smile, and hand out service bulletins.
  • Gather up the bulletins and papers left in the pews after the service, restoring order to the sanctuary.
  • Carry the offering plates to the safe following the service. 
  • Deliver crackers and juice to the little ones in the preschool classes.
  • Collect and deliver Sunday School attendance records to the attendance clerk.
  • Assist in the delivery of cards or food to homebound individuals.
  • Participate with deacons in the packaging and delivery of food and toys to the needy during the holidays.
Christmas
Christians celebrate the birth of Christ with much pageantry, tradition, and cultural ritual. Augmenting the typical worship service adds to the richness of meaning, while making the celebration more personal.
  • Talk about the spiritual aspects of the Christmas time in normal daily conversations. Describe the upcoming ritual and pageantry through simpler methods, such as through pictures, role-playing, and storytelling.
  • Bring a special item that might represent some element of the holiday celebration that can be held during worship. It may be a piece of textured "swaddling cloth," a shiny star, nativity figures, or cinnamon sticks. One symbolic item brought forth at the right moment may become part of the holistic experience of celebration.
  • During the service, follow along in the bulletin and prepare the individual for the moment any loud, dramatic music is to occur. Covering the individual's ears and gradually uncovering them may work. However, be prepared if does not; what is musical to one person may be cacophonous to another.
Giving Gifts - A Unique Approach
One church that I know has a wonderful celebration in early December where they gather to recognize the natural talents and spiritual gifts of its members -a bit of a twist on the gift-giving theme. From young to old, with talents that range from the artistic and musical to gifts of compassion and hospitality, many are recognized and encouraged. It would be a wonderful tradition for any church to duplicate.

As for the individual with autism, I know of one individual who has amazing attention to visual detail, which could be displayed with examples of his or her favorite pictures. I know of another person who has the warmest smile I have ever seen. This friend also demonstrates amazing altruism, and would make a wonderful greeter.

Community Responsibility
Introduce the concept that the responsibility for every member of the congregation is a corporate, shared responsibility. This is a true fellowship. The participation and inclusion of individuals with autism should not rest on the shoulders of one or even a few volunteers who are "trained" or ''assigned." Children and youth will need guidance to facilitate inclusion, as will many adults. Gradually, the focus of special assistance should fade as everyone accepts shared responsibility.

It takes effort and intention to help a person with autism discover his or her gifts. But in doing this exercise, we all would be challenged to focus on what the individual can do. By providing for inclusion of one individual, we meet the needs of each individual in the family by allowing their full participation in a faith community.

Terry Connolly is the mother of five children and an active member of the Highland Baptist Church in Louisville, KY. She has a Master's degree in Special Education and provides consultation and training in early childhood development.


The Jewish Perspective
By Joshua Weinstein

Excerpt of a letter from a parent to the Shema Kolainu School
Before Passover, my other children enthusiastically presented me with the projects they had made in Yeshiva (Hebrew school). My heart sank when my son who has autism and attends a public school brought me his book bag, which I opened only to find the Easter egg he had painted in class. My son knows how to say the "Shema" prayer, but can also tell me stories about Santa and the Reindeer.

We have accepted that God has chosen for us to have a child with autism. When he became of school age and we sought to provide him with a Jewish education, we were extremely disheartened to learn that not a single school program existed that would serve the needs of Jewish children with autism. Doesn't each and every Jewish child deserve the opportunity to receive a Jewish education to the best of their individual abilities?
This was my first introduction to the pain and feelings of a Jewish parent on her inability to send her child to a school of her choice that would help keep the family identity. There were no Jewish schools using ABA (Applied Behavior Analysis, an intensive behavioral intervention technique) for children with autism anywhere in the United States.

Since I founded Shema Kolainu, the first Jewish school using ABA on a one-to-one basis for children with autism in the U.S. in 1988, we have been flooded with phone calls from heartsick parents on a daily basis. Although not a religious school, Shema Kolainu fulfills the need to learn about Jewish culture and heritage as well as focus on the bilingual needs of its students. Our programs and services are designed to accommodate a broad range of functional levels and varying degrees of disabilities. Students are taught about Jewish holidays through music and arts and crafts, to give tzedakah (charity) at circle time, to say and read the Aleph Beth (alphabet), and are taken to a matzo bakery to bake matzos before Passover, to name a few.

The official name of our school is Shema Kolainu, which means Hear Our Voices. Hearing the voice of the child and the family means assisting the child to reach his or her potential, both in an academic setting as well as a community setting. It is not enough for a child to achieve in the classroom and then not have the skills needed to be successfully integrated into their community and partake of his or her own culture and heritage. This is extremely important and beneficial for the individual with autism, the family, and the community at large.

Rituals and Individuals with Autism
Children who have autism spectrum disorders benefit greatly from consistency. The Jewish religion has practices such as daily prayer and weekly ceremonies in a synagogue. One mother told me how her 16-year-old daughter who has autism attends synagogue each week, uses a prayer book, and even answers "AMEN" along with the congregation. A local synagogue gives a young person with autism the honor of collecting the prayer books after services.

Below are other examples of activities in which children with autism may be encouraged to participate:
  • opening and closing the ark before the Torah (Jewish scripture) is read
  • helping the reader turn page numbers
  • assisting in preparing and setting up the Kiddush (Sabbath reception)
  • helping to put away the prayer shawls after services

Familiarity with these practices from an early age promotes greater inclusion into the community as adults and helps some children to better understand their cultural and religious practices.
Special Ceremonies

Ceremonies can be a wonderful and meaningful experience for both the child and his or her family. When a Jewish child turns 12 or 13 years old, he or she undergoes a ceremony called a Bar Mitzvah (boys) or Bat Mitzvah (girls), which symbolizes entrance into the realm of adulthood and the observance of mitzvahs (positive deeds).

A child with autism, depending on his or her functioning level, can participate in a variety of ways:
  • some may be called to read from the Torah
  • others may recite a passage from a prayer book
  • still others may recite a Bar Mitzvah speech
One family chose to make a Bar Mitzvah for their son with autism. They invited family and people who had made a difference in their son's life over the years. The mother says emphatically that this was the best decision she has ever made. Her son enjoyed the ceremony and reception, and the family felt comforted to know that they were surrounded by people who love and support them. Their son's favorite activity is to look through his Bar Mitzvah album and watch himself on the video.

Holidays
The holidays can be a stressful time for a person with autism because it is a breach in their daily routine. If a child is educated about the holidays before they arrive, he or she will be more comfortable and feel at ease. This, in turn, will alleviate much stress from the family.

It is important, therefore, to remember to apply the techniques used to involve the individual with autism in daily activities to these special activities. The individual with autism may be asked to participate at some level in many rituals or ceremonies, such as:
  • the weekly Sabbath festivities in the home
  • the Sabbath festivities at the synagogue
  • the Passover Seder
  • Chanukah candle lighting
All of these activities create a bonding between the parent and child and the community at large.

Judaism and Special Children
Judaism has strong traditions regarding special children. It is said that Chazan Ish, a great Rabbi, always stood up when a special child entered the room because he said that their souls are lofty and pure.

Even so, a local synagogue may need some guidance and sensitization to the needs of its special congregants. If there are issues that arise concerning a person with autism or other special needs, it is a good idea to set up a private appointment with the rabbi.

Issues that can arise may include a child's disruptiveness during services, inclusion into youth group activities, and fostering greater understanding and sensitivities from members of the congregation toward the population with autism.

Inclusion of people with autism and other disabilities into our community and places of worship is beneficial to us all. We can all learn a tremendous amount from them about patience, perseverance, dedication and sincerity.

When we introduce an individual with autism into a religious community and help them relate to the holidays, customs and celebrations become more meaningful to everyone. This, in turn, helps those in the community understand the child better as he or she performs certain rituals together. This brings parents and siblings closer to their child with autism, and benefits both the family members and everyone close to them.

It may sound cliché, but the following statement is both apt and true: "Families that pray together stay together."


Joshua Weinstein, M.Ed., MBA, is the President and founder of Shema Kolainu - Hear Our Voices, the first Jewish school for children with autism in the U.S.

For more information about the Autism Society find them on Twitter or visit their website http://www.autism-society.org.
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from the editor: We have the luxury of having family that's clergy; when we go to church we are truly welcomed with a warm heart. We used to take Jack out of the sanctuary any time he made a sound that was out of place, because as much as he loves the music, singing and Uncle Joel talking on a microphone, we have always been sensitive to the needs of people around us. As it turns out, every time we left that back pew, we were missed. It wasn't until this Easter, sitting in the front row...the whole service, Jack's vocalizations and all, that we finally realized how welcome we were. At some point in the service, Pastor Joel made a powerful statement, and though I can't remember what it was he said, I'm sure my son remembers, because in the silence, Jack (who is generally non-verbal) said, "Amen." When Joel comfortably acknowledged Jack by name and moved on in his sermon I realized that the only concerns, the only things holding us back from being full participants were our own unnecessary insecurities. Jack was fine, the pastor was fine, the congregation was fine. Gathered in the narthex later, the sweets of Easter scattered about, at least four families made a point to tell Jack that it was great to have him stay for the whole service. - Jennifer Byde Myers

1 comment:

Anonymous said...

Mormon member bullied our young autistic son