Positively Autism

Autism and Spirituality
Volume 4, Issue 5 ~ September/October, 2009

Autism and Religion

by Rabbi Heiligman

With all the energy that it takes to help our children succeed in their everyday school settings, sometimes the thought of enduring a similar struggle for their religious lives can seem so daunting that we postpone their religious education and/or participation long past the time we would provide it to a typical child. I have the dual perspective of being the parent of children with ASDs as well as being rabbi. I'd like to share some of what I have learned, from both sides about integrating our children into faith communities.

To blend in at church, synagogue, mosque or temple, a child will probably need a new set of behaviors that may only be used in that context. S/he may need to learn to read responsively, to sit quietly through a sermon that s/he may not understand, to sing along with other people in their key, at their tempo. The “choreography” of a service may include prayer in a posture that is rarely or never used in other settings, such as kneeling or prostration.

Some congregations actively reach out to people with disabilities. If you have found one in your preferred denomination you are fortunate, indeed. Some congregations believe they are welcoming, but have not yet come to realize that ramps and elevators, sign language interpreters, and Braille materials are accommodations only for those with physical disabilities. Welcoming those with autism and other developmental disabilities, as well as mental illness requires a completely different set of accommodations. While many of these are far less expensive than adding elevators and ramps, in my experience they are made much less often.

Many fellow congregants have no prior experience with interacting with people with autism, especially older people who grew up in the days when virtually all people with autism were institutionalized. This segment of the population may be more rigid in their views of proper behavior in a house of worship, and while those disapproving looks may be no different from the ones we get during a tantrum in a shopping mall, we don't go to services to have our parenting critiqued by the ignorant.

Individuals, clergy, and staff may greet our children with a variety of reactions from warm welcome to annoyance at their quirks or outbursts, to benign neglect of their education, to the hurtful letter I saw suggesting, “Perhaps another congregation could better meet your needs?”

As a rabbi, I have always wanted to accommodate people with special needs. But when I was a Sunday school principal at a small congregational school, even we reached a point where we could not handle a child with an (undiagnosed or unrecognized) disability. There was the day he broke the overhead florescent light, raining glass on the room, another time he climbed up on the roof and we tried to keep him in school. But the day he hid twenty feet up in a tree and watched panicked people search for him down below, I had to admit that he was too much for our small school to handle, especially in our litigation-prone society. Not only did his classroom behaviors disrupt the education of the entire class but he was a danger to other students and himself. We offered tutoring as an alternative to the classroom. That was back in the days shortly before my son was diagnosed. Knowing what I do now, I'm still not sure that we could have made that a successful experience. I don't remember why we didn't try a one-to-one aide. Perhaps we couldn't find one, or maybe it was because in their denial the parents refused one, and it's possible I was unfamiliar with the concept back then. It was over 10 years ago, and I still remember that experience as a failure.

But from the school's perspective, I believe the demands the family made were unreasonable. In order to mainstream or fully include a child, s/he cannot be a danger to self or others. Many congregation classes are taught by people who are not trained educators, much less special ed teachers, so as parents it is often going to be our responsibility to teach them how to educate our children.

Here is an assortment of thoughts, observations, and suggestions about what we can do for our children's spiritual lives:

  1. When my son David was approaching his bar mitzvah, my husband began to question whether it was appropriate for him. Gary said that David didn't even know what God is. “Do you?” I replied.

  2. Our children learn by routine and repetition, so if you can be comfortable in a service with a set liturgy, your child will learn it with consistent attendance and get it by rote. This was tremendously successful for David. His bar mitzvah was a peak experience for him, for us, and for everyone present. He even appropriately threw in a paragraph of Hebrew that he knew by heart that wasn't in the book. The normal expectations for a bar mitzvah ceremony drew on all his personal strengths, memorization, reading, and music. He was able to do something very well that is considered valuable and difficult by the Jewish community, and in front of 150 people. It was truly a moment for him to shine.

  3. If your tradition doesn't have a set liturgy, try to find a consistent format, or a church which hands out a program which your child can follow, it will help provide predictability, similar to using a schedule in class.

  4. Let your child find a talent or job in the community which can be his or hers. In the Muslim tradition, where memorization of Koran is valued, it might be a worthy goal for a child with autism. A Christian child might be given the job of placing the programs in the pews before the service, or shelving books in the library. Of course these depend on the person's skills. My son likes to recite a certain Hebrew blessing.

  5. If your religion has regular rituals or holidays as Judaism does, observe them. We welcome the Sabbath every Friday night with the same family customs.

  6. Enlist your computer. Provide your child with software to teach religious concepts from Bible stories to Hebrew. I don't know what is available for different faiths, but it has been a great way to teach David Hebrew reading and some vocabulary, Torah chanting, and about the Jewish holidays. Check your religious bookstore or the internet to see what is available. Likewise, CD's of hymns and songs can teach them so your child can join in and feel comforted by familiar music during services.

  7. Consider the size of the congregation you join in light of your child's needs. Larger congregations will have more financial resources for accommodations, but smaller ones may have more tolerance for eccentricities.

  8. Talk to your clergyperson and then talk to your congregation. See if your clergy will let you speak to the congregation from the pulpit about your child's disability, the behaviors they might see, and how much you appreciate their treating your child as part of the community. This may work in a smaller congregation. In a large congregation, perhaps you can write a piece for the newsletter.

  9. Try not to get too embarrassed by your child's behaviors. One rabbi of a son with autism recently told how embarrassed he would be when week after week his son would jump up and down and dance when the Torah was being brought out of the Ark (cabinet). Finally someone came up to him and said, “Every week your son jumps and dances when the Torah comes out. We should all be so joyous at that moment he inspires us. Everyone loves his excitement. The only thing that ruins it is the pained look on your face.”

  10. Talk to the religious school principal and teachers about what works for your child. If you use a point sheet at school, make a similar one for religious school. Transfer the successful techniques for them. Don't expect the school to be a special education team. Do expect them to work with you and implement a system you have made as simple as possible for them.

  11. If the program is too rigorous for your child, see if another school might better serve your needs. In the Baltimore/Washington Jewish community we have special needs day schools for lower functioning children, but not for the higher functioning part of the spectrum unless they are truly ready for full inclusion. We have afternoon/Sunday programs that meet three times/week, twice/week, once/week and twice a month. Consider the intensity of the program, and whether your child can handle additional demands after school.

  12. Consider carefully what you want your child to get from his/her religious life:

  • Rules for living? People with Asperger's like to know what the rules are.
  • A relationship with God? How will you present it in a way your child can understand? (See the point above)
  • A community?
  • An education?
  • Salvation through a particular tradition or denomination?

Which house of worship will help you and your child get to where you want to be? Although most of us have a loyalty to the denomination of our birth, you may need to guide your child to a community which is more or less traditional, structured, larger or smaller, louder or quieter, more musical, more “down to earth and accommodating” or more formal and predictable. Don't be afraid to expand your own comfort zone to find your child's. You may need to cross denominational or neighborhood lines for example, to a different parish. In most places things are continually improving. Be willing to support your congregation in their efforts to grow in this area, some well-meaning people are clueless, but willing to learn. Try not to be adversarial. Instead, try helping them solve their problem of how to do the right thing which you and they both know they want to do. After all they are ministering to the children of God, and each of God's children is entitled to an accessible path.

A note on Bar/Bat Mitzvah in particular: I frequently get calls that rabbis won't accommodate a child who needs transliteration, that they have to read the Hebrew, or attend a certain number of years of school, regardless of whether the school can or did accommodate the child, or they can't have a Bar/Bat Mitzvah ceremony. Discuss it with your rabbi if this happens to you. If you need help, contact me at rabbiheiligman@verizon.net.

Return to Issue Contents

Copyright © 2009. Positively Autism. All Rights Reserved.