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:
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 firstname.lastname@example.org.