In honor of Autism Awareness Month, I've asked Bill Gaventa to write a guest blog for the Autism at About.com site. Bill is the Coordinator of Community and Congregational Supports at the Elizabeth M. Boggs Center on Developmental Disabilities and has, for many years, been a mover and shaker in the world of religious inclusion. If you are part of a religious community and interested in inclusion for individuals with autism, you'll know how very tough it is to honor the needs and wishes of an established congregation AND the needs and wishes of families with children on the autism spectrum. Here is Bill's take on the process, which he sees as a sort of dance!
The Dance of Embrace: Inclusive Spiritual and Religious Supports with Children and Adults on the Spectrum and their Families
In his excellent book, Exclusion and Embrace: A Theological Exploration of Identity, Otherness, and Reconciliation, (Abingdon Press, 1996) theologian Miroslav Volf writes about the alienation of various peoples in our world today across boundaries of race, religion, national identity and more. He never specifically mentions autism, disability or inclusive faith supports at all, but, in broader and deeper terms, the book is all about that.
Volf writes, from a Christian perspective, that people of faith are not called to embrace everyone who is different or seen as stranger or other, but that we are called to have the will to embrace. So the dance begins, as one moves toward another with open arms. That's the first step. The second is not the embrace, because an embrace without permission, or an implicit "I am going to love or help you whether you want it or not" is not going to work, especially in a world of autism where people may be very sensitive to touch or invasions of person. Rather, in the second step, we are to drop our hands, step back, and begin a dialogue, see what truth needs to be told, before the embrace can be real or the dance begin.
Think of that dance with three partners with huge diversity in each: people with autism and their families, religious communities of all kinds of persuasions, sizes, and traditions, and public (sometimes "secular") services such as schools, behavioral programs, and adult services. One of the promising signs of reconciliation and new dancing is that there are people and resources in each of those worlds who are trying to dance together. The music has started, the dance begun, but it will take a lot of practice and learning before the occasional stumbling and stepping on others' toes transforms into graceful movement. But grace-full movement and moments are happening, all over the place.
There are more and more congregations and faith communities looking for ways to include children and adults with autism and their families, responding to the heightened awareness of autism in their own communities and the growing interest in faith supports with people with disabilities of many kinds. The spiritual quest of how to become and be a community of faith in a world of diversity is one where inclusion of children and adults with disabilities can be an opportunity for faith communities to practice what they preach.
Many are just learning the "steps." See:
- Autism and Your Church by Barbara Newman.
- Welcoming Those with Autism and Asperger Syndrome in our Churches and Communities
- Jewish Community Guide to Inclusion of People with Disabilities by Shelly Christensen.
- Some Steps to Make your Masjid and Community Center More Inclusive.
There are more and more families with members on the spectrum who realize the inherent gifts of acceptance, belonging, learning, ritual, and growth that are part of so many faith communities, gifts that a child or adult on the spectrum needs as much as any other person, if not more. There are, as many know, far too many families who have been turned away, or turned themselves away, from their community of faith, some of whom are regaining the chutzpah to try again. Some are parents and clergy.
And, finally, there are more and more autism programs and services listening to the expressed needs of individuals on the spectrum and their families and/or to faith communities seeking their help to include and/or support people in their own synagogue, mosque, church, or temple. See:
- Autism and Faith: A Journey into Community. Developed by The Daniel Jordan Fiddle Foundation in collaboration with The Elizabeth M. Boggs Center on Developmental Disabilities
- Resources on autism and faith communities from Neurodiversity.com
This is not to say there are not issues or problems. There are many. Most clergy and religious leaders have had little or no training in autism. Behavioral issues in congregations can be a real barrier until people develop understanding and skills, often with the help of school personnel, in addressing those issues that, surprise, turn out to be good for use with lots of children. (Teaching others in a faith community your skills in ABA and positive behavior supports is not a violation of church/state boundaries.) Families may sometimes approach a faith community the same ways they have often had to approach schools to fight for appropriate services, but the only real mandate a faith community has for inclusion of everyone is a moral and sacred one, not legal. Dancing together is an act of the spirit, not law, a fact that calls for all three partners to work together in ways that respect and share different gifts, limits, and roles in ways that invite and call others into being part of the embracing arms. It calls for grace when toes get stepped on and a commitment to figuring it out, over time, knowing that it takes practice and time.
That is also happening. See the PRAISE program of the Archdiocese of Newark, in which experts in autism, Applied Behavioral Analysis (Caldwell College), parents, and religious educators (groups who would not have been good dancing partners a decade ago) are using best practices in ABA to help children attend mass, participate in confirmation, and develop resources for inclusive religious education.
When you get discouraged, know that there are resources, partners, and examples out there. People doing what you would like to do. Then there are the stories, coming from many of these initiatives and so many others, that simply speak for themselves. Stories about the power of inclusion for individuals and families. Stories about the gifts that those initiatives bring to the wider community. Hear the minister in South Jersey who told a mom and her child, ejected earlier from a worship service for noise and behavior, start to leave again and hearing the pastor stop the service and say, "Sit down. We'll figure it out." (Autism and Faith, above)
Read Emily Colson's line "Churches that make space for autistic children on Sunday mornings will be disrupted -- by joy." and her blog about her Max and the grunt crew at their congregation.
Kathy Bolduc's book, Autism and Alleluias.
And finally, heed Rabbi Heiligman's advice for families:
Then try not to get too embarrassed by your child's behaviors. One rabbi of an autistic son 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."
Who knows? Some people may be better at dancing before the Lord than others.
More About Religious Inclusion and Autism
This is a really intersting topic. Thank you for blogging about it.
Interesting and important to many families.
We have just begun going to church again because a pastor and his youth Christian education team made accomodations so that our 6 year old son with autism could be a part of our worship. It does not always work but it is amazing when it does. There are times we think we have it figured out & he outgrows where he was once comfortable – thankfully! Having a team of accepting individuals who are willing to embrace us imperfect & in need of spiritual fulfillment has been a gift beyond words! All things are possible in Christ – He loves all people not just those who can sit still and be quiet during service…
Thank you for your article on INCLUSION. We are very dedicated to Including children with autism in Synagogue Life and have created Nes Gadol, a Bar and Bat Mitzvah program and religious education program for children with autism and other special needs at Vista Del Mar in West Los Angeles. Through our programs teens across the spectrum verbal to nonverbal – become part of a dynamic, inclusive, creative religious community. We also share our methods with local Synagogues and Churches on how to create “sensory friendly” services; build compassion and understanding; enlist a buddy system; and mostly ACCEPTANCE of those who experience life differently. As my mentor, Rabbi Brad Artson says, “If we all live long enough, we will all have a disability.” The time to create compassionate communities are NOW. Families with special needs NEED spiritual support. Thank you for shedding the light on this important topic.
Thanks Bill,
There are so many people at this dance. Some who came eagerly, some dragged kicking and screaming, but as challenging as autism can be, I believe our religious and faith communities will be enriched by the inclusion of all, and those who make the effort to bring in these individuals and families will find that they too will grow in spirit, wisdom, and, yes, probably patience, too. Keep up the good work!
Rabbi Heiligman
Bill,
Excellent, as usual, Bill. For others, I am at work on a book entitled, “Amazing Gifts: Stories of Faith, Disabilities and Inclusion,” a mosaic/tapestry of personal accounts, much in the words of people closest to the issue. The book will be published later this year by the Alban Institute. We are still in need of stories from the Latino community, especially mainline Protestant, evangelical and Pentecostal congregations/programs (we have excellent stories from the Catholic Church. If you can help, my email is: osopinsky@aol.com.
Thanks.
Mark Pinsky
Thank you Bill for inviting US to the dance. Our steps awkward but thank you for welcoming us to the dance floor given practice and support we can become the community of choreographers. With you permission. Ira
Bill makes a beautiful analogy in comparing our initial steps toward the full inclusion of people with disabilities into faith communities to joining in a dance. As he explains, not only is the dance sometimes awkward and all but graceful at the beginning, it can be a bit of a challenge to most of us. What I like even more about the analogy, is that dance is an art form, an expression of who we are as a culture and a people. Thank you to Bill and all those out there who have joined the dance- let’s keep it full of joy and ever moving toward the grace-filled relationships waiting to develop between people with autism and the “nuero-typical” people in our faith communities.
Karen Jackson- Director, Faith Inclusion Network of South Hampton Roads, VA
Thanks Bill! I plan to share this with local mosques. This is a new and relatively unchartered frontier for mosques and I believe your blog will help chart the way forward for our community. As the parent of an autistic child I certainly appreciate your taking on this topic.
Right on, Bill. I love the metaphor of the dance. Learning to dance is never easy – both partners tend to step on toes at first. But the important thing is to keep on trying. As the mother of a son, Joel, who has autism, I am so thankful that we never gave up. There is so much joy in the end, for the entire congregation as well as for the family and for the child (or adult) with autism. The look on my son’s face when he takes communion is priceless. As Joel, would say, Woo Hoo! (His version of Amen!)
Dear Bill,
Thank you for sharing your insights and excellent resources on including people with autism and their families in their sacred communities. We can all partake in the moments of grace and open heartedness when we welcome, really welcome people with disabilities in MEANINGFUL ways into our houses of worship. It seems like it should happen naturally as it is as elemental as the air we breathe. Yet, we benefit from guidance on our way to change the culture of our sacred communities, so that they understand that the benefits of inclusion are not just for people with autism and other disabilities and their families. The enhanced richness of the community happens when we understand that everyone benefits from inclusion.
Thank you for being a leader and sharing your wisdom!
Warmest regards,
Shelly Christensen, Inclusion Innovations LLC.