Autism and Faith: A Journey into Community

This publication is a collaborative product of The Elizabeth M. Boggs Center on Developmental Disabilities at UMDNJ-Robert Wood Johnson Medical School, Department of Pediatrics and Autism New Jersey, (formerly COSAC). The project and first printing were generously funded by a grant from The Daniel Jordan Fiddle Foundation. The second printing was funded by the New Jersey Department of Human Services, Division of Developmental Disabilities, contract (Contract #07ML11C). Editors: Mary Beth Walsh, Ph.D., Alice F. Walsh, M.Div., William C. Gaventa, M.Div. Editorial Committee: Anne Masters, M.A., Maria Abinader, Cynthia Chiarello, L.S.W., Suzanne Buchanan, Psy.D., BCBA, Mary Beth Walsh, Ph.D., Alice F. Walsh, M.Div., William C. Gaventa, M.Div. Copy Editors: Jessica Alloway, Hope Arvanitis, Robyn Carroll, M.S.W., Kathy Roberson, M.S.W. Our deep gratitude to the individuals, families, and congregations who shared their stories with us in response to an Autism and Faith Survey and Questionnaire. For additional copies, please contact The Elizabeth M. Boggs Center on Developmental Disabilities at 732.235.9300 or http://rwjms.umdnj.edu/boggscenter. Publication date: May 2008. Second printing, June 2011.

umdnj

R ober rt W ood J ohnson M edical S chool

T he E lizabeth M . B oggs C enter on D evelopmental D isabilities

Department of Pediatrics

University of Medicine & Dentistry of New Jersey

A University Center for Excellence in Developmental Disabilities Education, Research, and Service

New Jersey’s Autism Resource

Autism and Faith: A Journey into Community Table of Contents

Preface: How this Booklet Came to Be

Mary Beth Walsh Ph.D., Alice Walsh, M.Div.,

page 2

and Bill Gaventa, M.Div.

Open The Door

Linda Walder Fiddle, Esq.

page 3

Value of Faith

Linda S. Meyer, Ed.D., M.P.A.

page 4

What is Autism?

Peter Gerhardt, Ed.D.

page 6

Autism Life Cycles and Faith Communities

Sandra L. Harris, Ph.D.

page 9

Communities of Faith and Individuals

Mary Beth Walsh, Ph.D.

page 12

with Autism: Perfect Together

Autism and the Family

Alice F. Walsh, M.Div.

page 16

The Hallways of My Church

Maria Abinader

page 18

Inclusive Faith Practices for Children with Autism

Anne Masters, M.A.

page 20

A Vibrant Spiritual Life: Suggestions for Congregations on How to Support Adolescents with Autism

Lois Spitzer, Ed.D.

page 27

My Story

Joshua W. Spitzer

page 29

“Of Course” – Ministry and Service

Bill Gaventa, M.Div.

page 30

by Adults with Autism

Creating Sanctuary: A Clergy’s Guide

Rabbi Geoffrey Haber, D.Min.

page 32

Finding Sanctuary: A Parent’s Story

Madeleine Goldfarb, M.S.W.

page 35

“Am I My Brother’s Keeper?”

John H. Harris, M.Div., D.Min.

page 37

The Person in the Pew

Cynthia Chiarello, L.S.W.

page 39

Autism: Presence and Justice

Kristina Chew, Ph.D., and Jim Fisher, Ph.D.

page 42

Inclusion in Faith Communities: Some Tips for Parents to Get Started

Mary Beth Walsh, Ph.D., and Bill Gaventa, M.Div.

page 45

Resources

page 46

Preface: How this Booklet Came to Be!

At a Sunday service several years ago, as the congregation was chanting an ancient and haunting invocation to the Holy Spirit, I heard a loud and clear and very distinctive voice above the song. I knew immediately there was a child with autism in the church. And my first thought was, “We are not alone.” My younger son had been diagnosed with autism just a year before, and I had not told many people in my faith community, and had no idea there were other families of children with autism in the congregation. I had assumed we were the only ones. But that Pentecost morning, as we invoked the Spirit of God who acts in human history and who sustains our life together, I began to realize that this community, like faith communities of all kinds, could and did welcome individuals with autism. This resource for including individuals with autism in faith communities is written so that others will not feel alone. Parents and families of individuals with autism, congregations struggling to become better at being inclusive, and individuals with autism themselves all need to know that they are not alone.

This booklet has its roots in a panel presentation given at the 2005 annual conference of The New Jersey Center for Outreach and Services for the Autism Community (COSAC) on including individuals with autism in faith communities. The work has been carried on by The Autism and Faith Task Force of The Elizabeth M. Boggs Center on Developmental Disabilities and COSAC. The Task Force’s first action was to survey parents, family members, and professionals in faith communities, to determine the most

“...as we invoked the Spirit of God who acts in human history and who sustains our life together, I began to realize that this community, like faith communities of all kinds, could and did welcome those with autism.”

pressing issues regarding inclusion so that this resource could be as useful as possible. Alice Walsh, during her Traineeship at The Boggs Center, did much of the coordinating and organizing work on the questionnaire and the first versions of this booklet.

Many parents, religious educators, and other religious professionals completed our survey, and we would like to thank them. We especially want to thank all the families who took the time to write down and share their stories; this booklet is much richer for those many varied voices. We also want to thank all the members of The Autism and Faith Task Force, who have gathered for numerous brainstorming and editorial meetings during the past two years. Thank you also to all of our contributing authors - your words will make a difference in the lives of others. We remain especially grateful to The Daniel Jordan Fiddle Foundation for funding support and for believing in the purpose and value of this resource.

Finally, we’d like to thank all the individuals with autism spectrum disorders whose lives and dignity have inspired all involved. You are not alone.

Mary Beth Walsh, with Alice Walsh and Bill Gaventa, Editors

Autism and Faith

Open the Door Linda Walder Fiddle, Esq.

In 1993, when my son, Danny, was diagnosed with Pervasive Developmental Disorder (PDD) (that I later learned meant he was autistic), my first thought was not to run to my local synagogue for support. Perhaps this was in part due to my own religious upbringing, which amounted to attending High Holiday services and various life cycle events of friends and family members. Indeed throughout my adult life, I had rarely sought out support or participated in a faith community. Thus, when confronted with Danny’s autism, I did what I always did: I organized a plan of action. That plan included finding an appropriate school, therapists and doctors and although I was propelled by my own sense of faith, the plan did not include joining a faith community. When I reflect back now I realize that the reason I did not look to my faith community for support was that I just couldn’t deal with the possibility of rejection. Quite frankly it was challenging enough to navigate the daily routines that required tremendous planning due to Danny’s unpredictable and frenetic behaviors and I did not feel at all that he could handle the requirements of religious worship. My defensiveness and protectiveness fueled the notion that if Danny would not be welcomed, the rest of the family would not be welcomed either. And so, our family never joined any faith community of any kind. There were times, however, that I peered through the peephole of the door to my faith community but always my fears, real or imagined, kept me from opening it. And because I did not open the door, I did not know what was behind it and what I was missing. A caring friend would call me from time to time to invite me in and finally, after many excuses, I joined her for Shabbat dinner and services. Gradually, I realized that I was not dishonoring my son if I sought the comfort and support of my religious community. In fact, through my own involvement and knowledge I could create a path to honor him as well as opportunities to include others who, like me, stood at the door but could not open it. It is my hope and prayer that whether you are a parent of a child with autism, an adult with autism, a mother, a father, a sister, brother, aunt, uncle or friend of someone with autism that you will read this book and find ways that you can open the door to your faith community. Bring it to your clergy, your lay leaders and your teachers to read so that they can help you open the door. You and they will never know what has been missing until that door is opened.

Linda Walder Fiddle, Esq., is Executive Director of The Daniel Jordan Fiddle Foundation and a member of the Board of Trustees of COSAC. Ms. Walder Fiddle is a member of the NJ Adults with Autism Task Force and a member of the Board of Trustees of The Barnert Temple in Franklin Lakes, NJ.

“When I reflect back now I realize that the reason I did not look to my faith community for support was that I just couldn’t deal with the possibility of rejection. My defensiveness and protectiveness fueled the notion that if Danny would not be welcomed, the rest of the family would not be welcomed either.”

A Journey Into Community

The Value of Faith for Individuals with Autism Spectrum Disorders

Linda Meyer, Ed.D, M.P.A.

“I sat motionless as my daughter stepped up to the Torah for the first time at her bat mitzvah.” - Dad of a 12-year-old daughter with autism “This was the first time we were able to attend mass on Christmas Eve as a family.” - Mom of a 9-year-old son with autism

The parents quoted above speak of “first times.” Their comments imply there were previous times that were less than successful, or times not attempted perhaps due to fear of rejection or embarrassment, stress, and/or lack of support or energy. It is clear that these parents value their ability to attend worship services and are grateful when their children with autism spectrum disorders can accompany them and they can worship as a family. For many parents, faith goes beyond themselves, and their family. It means being part of a community. Half of people living in the United States attend weekly religious services. Given that faith can play such a significant part in a family’s life, individuals of varying abilities and disabilities should have access. We can speak of the value of inclusion, not only for individuals, but also for the communities. We look to a future when individuals with special needs are accepted and accommodated naturally and spontaneously in the places where they learn, exercise, live, work, play, and pray. Spiritual training may be considered the highest form of education.

“Religion is all deeds and all reflection…Who can separate his faith from his actions…? …And take with you all men: For in adoration you cannot fly higher than their hopes nor humble yourself lower than their despair.” (Kahlil Gibran)

All of us: parents, religious educators, rabbis, priests, ministers, imams, congregations, behaviorists, lay leaders, administrators, and teachers need to work together to offer opportunities for participation and choice for all individuals with autism spectrum disorders in their congregational lives and worship. How can we level the playing field and open the doors? First, teach with the end in mind. Employ evidenced-based learning principles to teach attendance and participation in services with the same intensity and consistency used to teach academic, vocational, leisure, or domestic skills. As with any inclusion opportunity, repeated practice and feedback are essential to initially “look the part,” and eventually, truly become a part of the community.

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Autism and Faith

Second, remember that on a personal level, we are all teachers. Teach each individual with an autism spectrum disorder with:

Compassion …to make a difference in the life of an individual with an autism spectrum disorder, you will need to go beyond what is convenient and easy; Understanding …of the spectrum of differences; Acceptance …welcome all and those who accompany them by your positive verbal and nonverbal behavior; Respect … the individual gifts each person brings to his/her relationship with God and the community, and their privacy; Support …until everyone can take advantage of naturally occurring supports; Tolerance …to recognize and allow for deficits; Patience …while skills are repeatedly practiced; Willingness …to hear and learn about challenges, how people learn, and when and how you could respond (or not respond in some cases); High expectations …know that all can learn the necessary skills to become full and contributing members of the community.

Third, all of us seek communities that will welcome and support us. We all know how valuable it is to feel included; but it is even more powerfully rewarding to help someone else feel that they belong.

“Lord make me an instrument of thy peace… Grant that I might not so much seek To be consoled as to console; To be understood as to understand;

To be loved as to love.” (St. Francis of Assisi)

Fourth, we would like to believe that individuals with special needs are being increasingly accepted and accommodated naturally and spontaneously in the places where they live, work, play, and worship. Unfortunately, that is not always so. Parents and professionals need to adequately prepare their children and learners to meet the challenges of the real world. Places of worship need to be ready to welcome all. Then inclusion will not only be a possibility, but also a reality.

“Whether one believes in religion or not, and whether one believes in rebirth or not, there isn’t anyone who does not appreciate kindness and compassion.” (Dalai Lama)

I observed a Yeshiva program serving preschoolers with autism. One boy struggled each day with Moreh (teacher) Lisa to learn that people, places, and objects had names. His parents reinforced his lessons in the evenings. His ability to respond to simple questions was emerging. With lots of practice he was beginning to repeat short prayers. This day, while describing where objects were placed in relation to him and others, he was listing the people and objects in the room. He paused for a second, and his face lit up. With a smile he exclaimed, “God is everywhere!” Good job everyone.

Linda S. Meyer, Ed.D., M.P.A., is Executive Director of The New Jersey Center for Outreach and Services for the Autism Community (COSAC).

A Journey Into Community

What is Autism?

Peter Gerhardt, Ed.D.

In recent years, autism, or as it is more commonly referred to today, autism spectrum disorders (ASDs) have been the focus of extensive media attention. Barely a week goes by without some mention of autism in the media: from the epidemic-like increase in diagnosis, to potential genetic or environmental causes, to the discovery of promising interventions, or the news of some court case. But beside soundbite descriptions of autism as “a mysterious disorder,” there is rarely any discussion of what autism is, or for that matter, what it means to be a person with autism. First identified by Leo Kanner in 1943, autism is a developmental disorder that impacts an individual’s ability to effectively communicate and understand reciprocal social behavior. It is associated with the display of unusual (e.g., body rocking) or ritualistic (e.g., standing up/sitting down three times before taking his seat) behavior, interests or activities. Current prevalence estimates (CDC, 2007) indicate that 1 out every 150 children born will be diagnosed with an ASD and that it is far more commonly diagnosed in boys than in girls. In 1994, the DSM-IV broadened the definition of autism spectrum disorders to include Asperger Syndrome. Although autism is usually diagnosed before three years of age, it is not uncommon for individuals who have more language to be diagnosed somewhat later in childhood. In addition, there are a number of mildly involved individuals with autism who were misdiagnosed in childhood only to receive an accurate ASD diagnosis in adulthood. While intensive early intervention has proven to be a valuable tool in the development of more age-appropriate skills and abilities, ASDs are often regarded as lifelong conditions.

Autism is considered to be a spectrum disorder, ranging from mild to severe, due to the diversity of expression that is associated with the disorder. On one end of the spectrum are individuals diagnosed with more “classic” autism who tend to have limited verbal language and poor social comprehension. On the other end are those individuals labeled as having Asperger Syndrome who are verbally competent

“Autism is a developmental disorder that impacts an individual’s ability to effectively communicate and understand reciprocal social behavior.”

but still have significant challenges with social comprehension. In addition, a percentage of individuals with ASDs may also be diagnosed with an intellectual disability (e.g., mental retardation) while others may have IQs well above the average. It is this diversity of expression that prompted Steven Shore, an adult with Asperger Syndrome, to state that “If you have met one person with autism, well, you have met one person with autism.” No matter where a particular individual may fall on the spectrum, challenges in understanding reciprocal social interaction are central to the diagnosis of, and living with, an ASD. To those of us not on the spectrum, this impairment in social interaction is often the most confusing and challenging part of learning to interact with individuals on the spectrum. While a typically developing child is, in effect, pre-programmed to be fascinated with other children and to learn from other children (and adults), children with an ASD tend to be more fascinated with objects. While a typically developing child will easily make and keep friends, the individual with autism will, in most cases, have limited interest in, or ability to, develop age-appropriate social relationships. For individuals whose autism is less severe, this difficulty in the area of social interaction, particularly as they age, is sometimes misinterpreted by typical peers and unfamiliar adults as being purposeful, rude, or even arrogant. When this happens, it is important to remember that ASD is a brain-based disorder. Thus, the resulting social deficits are neurological in nature, and not a matter of choice, arrogance, or poor parenting.

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Autism and Faith

Mary, a member of her church

Overlapping the social deficits are communication challenges that are common to all individuals on the spectrum. As noted, some individuals may be quite verbal while many others may be non-verbal, have limited speech, or communicate through the use of pictures, sign language, or a specialized, augmentative communication device. Even those individuals who are verbal may be unable to sustain a conversation with another individual, particularly on a topic of little interest. On the other hand, if the topic is of interest, they may monopolize the entire conversation and insist that everyone talk only about that topic. In general, individuals on the spectrum have a very concrete understanding of language and, as such, have difficulty understanding idioms (e.g., “A picture paints a thousand words.”), metaphors (e.g., “All the world’s a stage.”) or euphemisms (e.g., putting “spin” on something to mean, well, lying). Since much typical conversation relies on such communicative flourishes, we can often inadvertently make language much more difficult for the individual with autism to understand than need be. The final area of challenges common to all individuals with ASDs are restricted, repetitive, and stereotyped patterns of behavior, interests, and activities. The diversity, however, comes in how these patterns are expressed in each individual across the ability spectrum. For one individual, it may mean a near total fascination with the green straws at Starbucks. For another, it may mean knowing, in precise detail, the evolution of the IBM Selectric Typewriter. Individuals may engage in a variety of repetitive actions or movements (body rocking or hand flapping, for example) called stereotypies. While we all engage in stereotypic behavior (twisting your hair when bored or tapping your pencil while you work), learners on the spectrum do so at a much greater frequency and intensity than do typical learners and, unsurprisingly, without an understanding of the social rules governing such behaviors (that is, for most people, those behaviors tend to be private rather than public).

It was 5 pm on a hot Friday afternoon. I walked down the hall to reach the waiting area, to greet Mary and her father. Mary has autism, as does her twin sister, Joann. We made our way to my office and not a minute went by before Mary had pointed with urgency at my desk calendar. She was very distressed that it still was on May 2007, and she visibly calmed when she ripped off that page and the month of June lay flat across my desk. Up and down the room she paced, reminding us both that it was June 2007. Taking hold of her fathers head, peering into his eyes, she kept repeating “2007?” To which he replied gently, “Yes, 2007.” She had such a strong presence in the room, was someone who knew what she wanted and she pursued that with zest and energy. She stood at the window, peering off at the trains as they passed by while I asked her dad about her progress during the previous months. He spoke of his daughter in a gentle, thoughtful way. His love and respect for her were clear and strong, so palpable in the room. We spoke of many things, and faith was just one. Mary’s family belongs to a Catholic church, and they all look forward to Sunday mass. Mary needs to make sure they all leave on time and her sister, Joann, starts to sing the hymns in the car on the way there. On arrival, the family takes their seats. The service starts, and Joann settles into the rhythms. Mary looks around checking the dates on

Autism spectrum disorders are challenging developmental disorders that significantly impact individuals, their families, and society-at-large. However, while the deficits and challenges (which are both complex and extensive) of autism are great, they represent only part of the picture. Individuals with an ASD can, and do, continue to grow, learn, and develop

“Autism is considered to be a spectrum disorder, ranging from mild to severe, due to the diversity of expression that is associated with the disorder.”

new skills and abilities across their lifetimes. They have the capacity for great joy as well as extreme frustration. Individuals with an ASD can be brutally honest by way of stating an obvious fact (“You are quite bald.”) but

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A Journey Into Community

Mary continued

find no satisfaction in gossiping behind your back. They are loved by their families and, in their own idiosyncratic way, love them back. Individuals on the spectrum can make friends but, often times, only with those who make the effort to reach out and become valued to them, as friends. Adults with an ASD can be employed in desirable jobs and live, with the necessary supports, in their own communities and in a manner that supports a positive quality of life. People with an ASD, it seems, are people. It is easy, with autism spectrum disorders, to focus solely on the challenges and deficits that define the disorders. On a person-by-person basis, however, this focus needs to be broadened beyond what the person has to include who the person is. This means attending to the strengths, preferences, talents, likes, dislikes, idiosyncrasies and, yes, charms that are part of each and every individual with autism. It will take some effort on your part. It will take some patience on your part. It will take some resilience on your part. But trust me, it will be time well spent.

the calendars, straightens out the books in the pews and, when distressed about something, will turn to her father, holding his face really close while insisting that he repeat the words she utters. Her father describes the tension between keeping Mary in the church and not wanting to disrupt the mass for others. Short trips outside of the church are necessary for Mary to satisfy her need to repeat and be echoed. But they return, making sure not to miss the best part, the blessing. Mary loves vigorously shaking the hands of her fellow congregants, needing to make sure that no one is left out. There are those difficult moments, when repeating exactly what is said just is not enough, and Mary’s tension rises and begins to show on her face. She will not move from the church bench despite her parents’ expert, gentle guiding toward the back door. Her father remembers how relieved he was when fellow congregants next to them helped get her moving on one occasion, reassuring her and repeating what she was saying to soothe her. During our session, I had the clearest picture of Mary and her family in church, singing and repeating, and being part of the life of the church. I found myself thinking how honored this church was to have this family as part of their community. All were enriched by their presence, respecting and admiring a family whose life journey is different to most, yet so similar in their desire to live out their faith in their chosen religious community. Charles Cartwright, M.D., Medical Director, The Autism Center, UMDNJ-New Jersey Medical School.

Peter F. Gerhardt, Ed.D., is President & Chair of the Scientific Council, Organization for Autism Research (OAR).

“Individuals with an ASD can, and do, continue to grow, learn, and develop new skills and abilities across their lifetimes. They have the capacity for great joy as well as extreme frustration. They are loved by their families and, in their own idiosyncratic way, love them back.”

Autism and Faith

Autism Life Cycles and Faith Communities

Sandra L. Harris, Ph.D.

People with autism are much like the rest of us. They are male and female, of every age and come in many shapes, sizes and colors. Some are very intelligent and some have intellectual disabilities. Some people have relatively few characteristics while others are profoundly affected by their autism and have many symptoms. They come from every social class, ethnic and racial group, indeed from every identity group including a diversity of religious backgrounds. They do share with one another important challenges that make their lives far more complex than most of us encounter.

There are five disorders on the spectrum of autism. These are Autistic Disorder, Asperger Syndrome, Pervasive Developmental Disorder Not Otherwise Specified (PDDNOS), and two rare conditions, Childhood Disintegrative Disorder and Rett’s Disorder. The characteristics tying these individuals together include their difficulties comprehending social interactions and their unusual use of language. Many people on the spectrum also engage in repetitive or stereotyped behaviors. They vary in the severity of these characteristics ranging from some people with Childhood Disintegrative Disorder or Autistic Disorder who may appear oblivious to the feelings or needs of other people, may not speak and are content to flap their fingers or rock for extended periods, to others with a diagnosis of Asperger

“For the family affected by autism, every life cycle event is fraught with potential challenges for the parent of a child on the autism spectrum and every point of the spectrum has its own demands.”

Syndrome or PDD-NOS who are aware of others, capable of some empathy, have complex but not socially attuned speech, and may be distressed by their failure to grasp the social rules, which are self-evident to most of us. These deficits in understanding social relationships, using speech for meaningful communication, and having rigid behavior patterns have an inevitable impact on siblings, parents and extended family.

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Living with Autism… Living with autism and having autism are different. Here are examples why. My son has autism so as he walks briskly tapping his head with each stride, he is unaware that there’s a hole in the grocery bag he’s carrying to the car for me and that he’s dropping food as he goes. Living with it, I only realize the bag has a hole. When hurrying to catch up with him, I notice two men turn and look at my son, then look down at the head of lettuce at their feet and shrug; teens sitting at an outdoor table an arm’s length from him point and laugh; a woman and child in front of a movie theater stop to read aloud the label on the cheese he dropped but don’t bother to stop him. continues on next page

Sponsor Aunt Connie, father Tim Craig and Clinton Craig with Bishop DaCunha at his confirmation.

A Journey Into Community

Living with Autism continued

Some people use the term “Family Life Cycle” to describe the familiar themes in family life that we encounter if we have children. Life cycle events may be happy, such as the birth of a much wanted child, or sad as in the death of a grandparent, but they are all normative events that most people encounter. Parents anticipate and expect milestones such as the first day of kindergarten, getting a driver’s license, or going off to college. For the family affected by autism, these events may not occur, and when they do not, their family member’s differences are highlighted all over again. Thus every life cycle event is fraught with potential challenges for the parent of a child on the autism spectrum and every point of the spectrum has its own demands. The characteristics of autism begin in early childhood and often persist into adulthood, making life very difficult for the family. They can also make inclusion in the worship practices of one’s faith community quite a challenge. However, the benefits of support for the family and the person with autism demand that a religious leader and congregation make this effort. Having a child with this degree of disability may heighten the need for families to understand their struggles within a religious context. One aspect of their sadness is that parents may recognize that their child might never participate in some of the major ritual blessings of adulthood, especially marriage and the practices surrounding the birth of a child. In spite of the loss of these anticipated moments of joy, parents, grandparents and siblings can take great pride in being present when their loved family member participates in some of the childhood religious rituals that are major developmental markers. A goal for many is to facilitate their participation to the extent that they can engage in age-appropriate rituals such as a First Holy Communion, Confirmation or Bar/Bat Mitzvah. Achieving this goal requires creativity and know-how on the part of teachers, religious leaders, and other members of the congregation. I have seen this done in ways that were deeply moving for all who were present. We need to do all we can to enable the person on the autism spectrum to be welcomed and participating members in our religious communities. For everyone, the most important benefit is having a lifelong community and place to belong. While we cannot know the extent to which a person will experience the sacred nature of the encounter, we do know that for those who love the individual with autism, this participation can be profoundly moving. We also know that the encounter with a spiritual dimension in one’s life is experienced by each of us in our own way. It is not our task to judge the quality of any other person’s experience, but rather to point in the direction of our faith community and allow the sacred relationship to evolve.

He has autism, so he knocks things off a table at Roman Gourmet one day, thinking that I didn’t understand what he wanted. He doesn’t even realize every startled person in the restaurant is looking at him-- even if they are trying not to. Living with it, I am painfully aware of the looks and the whispers in the restaurant as I determine a compromise that won’t inadvertently reward his behavior, but still prevent further disruption as I get him out of the place as quickly as possible. He has autism, so the next day at the same restaurant he’s too intent on his pizza to notice tears in my eyes when I apologize for the previous incident and the response is, “Don’t worry. We love him. He’s been coming here since he was this big,” motioning somewhere around knee level. He has autism, so it doesn’t occur to him that the people waiting with us in the long post office line may not be as entertained as he is by his unique way of “singing” to fill time. Living with it, I remember a man on the train yelling at me, “Can’t you keep him quiet?” I am prepared for the worst when the woman in front of me at the post office turns around, but she smiles and asks if it’s the echo in the room that he likes. The woman behind assures me, “it’s okay,” when he leans a little too close to look at her. I am prepared for a long, anxious wait in line but then both of these strangers offer to hold my place so I can attend to his needs. Situations like these arise every day. Although you might not know what it is when you see it, you probably live with continues on next page

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Autism and Faith

Living with Autism continued

Fortunately, the religious education teacher and leader of the congregation are not alone in having to devise methods for helping a person with any of the five types of autism adapt to the religious setting. Educators and parents often know a great deal about how to engage the person with autism. Parents and school teachers can explain the child’s learning needs and strengths and can identify trigger points that might cause distress. They can also teach the support people within the religious congregation how to use the appropriate teaching tools to facilitate realistic learning goals. Raising a child with an autism spectrum disorder is a daunting challenge to which many parents respond with remarkable grace, courage, and love. They educate themselves about the most effective teaching methods, work collaboratively with teachers and medical professionals, advocate vigorously to include their child in the community, and love their child deeply. This work has its rewards. Seeing a child who has been mute begin to speak, watching a child grapple with social challenges and become more adept interpersonally, getting a hug from their

autism, too. Perhaps it’s the young man next to you at church who calls out unexpectedly, the girl at the pool who is mesmerized by splashing water, or the boy continually opening the automatic door at the grocery store. Autism is all too common: 1 in 150 children born today will have an autism spectrum disorder. How you live with it makes a big difference.

Therese Ojibway, BCABA (Clinton’s mother)

child, celebrating all of the youngster’s achievements large and small are all very meaningful and not taken for granted in families who recognize how hard the whole family works to accomplish these goals. Many mothers and fathers report a strong sense of effectiveness as parents because they have coped well with unusually hard problems. Being recognized by one’s religious community for these accomplishments can be sustaining during hard times and a source of joyous celebration at other times.

Dr. Sandra Harris is the Executive Director of the Douglass Developmental Disabilities Center in New Brunswick, New Jersey.

“The symptoms of autism begin in early childhood and often persist into adulthood, making life very difficult for the family. They can also make inclusion in the worship practices of one’s faith community quite a challenge. However, the benefits of support for the family and the person with autism demand that a religious leader and congregation make this effort.”

A Journey Into Community

Communities of Faith and Individuals with Autism: Perfect Together

Mary Beth Walsh, Ph.D.

Just as the autism spectrum is remarkably diverse, so, too, the religious landscape of the State of New Jersey is exceptionally varied. One source reports at least 84 different faith traditions, movements or denominations right here in the third smallest state of the union. 1 From the Church of the Nazarene, to the Church of Jesus Christ of Latter Day Saints, from the Greek Orthodox Church to the Evangelical Lutheran Church, from Mennonites to neo-pagans, including representatives of all the major world religions, Buddhism, Hinduism, Judaism, Christianity and Islam, and through new religious movements like Falun Gong and the Mita Movement, New Jersey houses a rich and complex mosaic of religious communities. Yet, there is one thing we can point to that all these faith communities have in common: out of every 150 adherents in each of these traditions, one will have an autism spectrum disorder. And autism never affects one person alone; it involves the whole family, and the whole community.

Communities of faith have a critical role to play in the lives of individuals with autism and their families. Autism often and easily leads to a family’s isolation. Simply leaving the house can be challenging. Malls with escalators, revolving doors and crowds can be hard; movies with their imposing visuals and crushing sounds can be challenging; and restaurants may be impossible for people with restricted diets or food selectivity issues. Even visiting friends or relatives becomes difficult when they don’t understand the family’s challenges or second-guess choices made by the family. When a family member has autism, it is often easier to stay home alone than to venture out into the world.

The Mosca Family Our son is a part of this community of believers, and they deserve the chance to know him, too. We are not going to hide in the “cry room” anymore!

Communities of faith can mitigate the isolation that autism often brings. They can provide a place of solace and refuge. They can become a haven of acceptance and belonging for individuals with autism and their families. Welcoming, inclusive faith communities can make a powerful difference in the lives of families living with autism. Becoming a welcoming faith community will take some effort, but any such effort is amply justified by many of the central faith claims of diverse religious traditions.

Anonymous While sitting in worship with my two young children, an older woman asked me to remove my disruptive toddler. She spoke with a condemning tone, one I would soon become immune to. I took my children to the nursery and cried. A few weeks later, I tried to take my children to worship again, but my son was just as disruptive. When I stood up to leave, the pastor stopped me. In the middle of her sermon, she told me to sit down. She told the rest of the congregation that my son was a member of our church and that it was all of our responsibility to raise him and to teach him the ways of God. The tears I am shedding as I write this story are ones of gratitude, in contrast to those I shed seven years ago in the nursery of my church.

I would like to highlight four Christian beliefs that together build the case for including people with autism in faith communities. 2

The book of Genesis makes clear from the start that all of creation is of value to God. Genesis 1:31 tells us that God looked at creation and said it is good. One way to actively value the goodness of creation is to assure that our faith communities go out of their way to welcome all of God’s people. Including the ones who are

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Autism and Faith

The Lewis Family While I cannot say that my grandson understands all that he hears, I can say that he understands who God is, that we are in God’s house for worship, and that God saves us, loves us, and helps us with all things. My grandson recites Psalm 100 with the congregation and participates with the prayers and fellowship. The music captivates him. Initially, I had to bring a pad and pencil for him to doodle on after the music portion of the service was over, as his interest would fade. He has become more and more tuned into the service and I no longer need the pad and pencil. On February 25, 2005, my grandson was baptized. He has been accepted into the membership and looks forward to attending Sunday worship. Initially he would tear up the donation I gave him to place in the offering plate. He has since not only stopped this behavior, but has been allowed to stand and hold the collection plate.

Teraye Garry, Baptism Day, February 25, 2005.

friendless, the ones whose wheelchairs cannot get up our steps, and most especially the ones whose behavior may surprise us or disrupt our services are important ways to honor the goodness of God’s creation. It is the job of faithful Christians to figure out how to best include all in their worship. By doing so we are living out our belief in the implicit, radical goodness of all that God created. In addition to creation, the Hebrew Scriptures speak of the centrality of covenant. God tells the Israelites, “I will be your God and you will be my people.” (Lev. 26:12; Jer. 7:23) God extends an unbreakable promise, a covenant to God’s own people to not abandon them. While Christians and Jews see the precise nature of the covenant through the lens of their different histories, all believe it tells us something critical about God. God is faithful. God does not abandon God’s own people. God is always present for us. Faith communities can demonstrate their belief in the faithfulness of God when they themselves are faithful to those families in their midst who embrace a person with autism. Worship communities reflect the faithfulness of God when they stretch themselves to accommodate people with autism and their families, when they find special educators to offer religious education to children with autism, when they sing alongside the voiceless, or choose not to react to unusual behavior. Christianity shares with many other faith traditions a deep and abiding theological affirmation of hospitality as a virtue. From Paul’s Letter to the Hebrews, “Do not neglect to show hospitality to strangers…” (13:1) through the centrality of the value of hospitality in monasteries, up to the contemporary embrace of hospitality by groups like the Catholic Worker, the religious significance of welcoming others, especially strangers, has long been valued by Christianity as well as other faith traditions. 3 Christian faith communities must be inclusive if we are to honor our core beliefs; we value hospitality when we work for inclusion. We are called to find ways to accommodate those for whom it is difficult to be in church, those for whom the music is too loud, or the crowds too overwhelming. We need to make sure our faith communities welcome people with autism because, most simply, this is what Jesus would do.

Even a cursory familiarity with Jesus’ public ministry reveals that he spoke with the outcasts of his social world, with those despised by others, like the tax-collectors, and with those who were sick and those thought to be possessed, with women and children and

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A Journey Into Community

slaves and all those less valued by society. It is these people, those who will never earn their keep, who dwell outside the circles of power and wealth, who dwell on the margins, who were the friends of Jesus, as are all those on the margins today. We know that language remains an elusive goal for many with autism, and as Christians, we are called to speak with and for the voiceless, to recognize that not being able to speak is not the same as having nothing to say, and to include people with autism in a way that allows us to genuinely hear them into speech. These four core Christian faith claims, reflecting on creation and covenant, and on hospitality and the ministry of Jesus, orient us toward the work and ministry of inclusion. While not always a simple task, communities of faith must find ways to welcome people with autism and their families, not just because those with autism will benefit, but more so because in this way Christians testify to the truth of their faith through their actions. Although I have spoken here primarily from the perspective of Christian faith, one could make a parallel case for the importance of including people with autism from any of the many different faith traditions in New Jersey. It is critical that faith communities become inclusive given the prevalence of autism in our state. Communities of faith have before them a tremendous opportunity. When the doors of our churches, synagogues, mosques, and temples are opened, along with our hearts, to people with autism and their families, faith communities will experience a gratitude that knows no bounds, as they more authentically live out their beliefs. Footnotes 1 Approximate count from 181 different sources on New Jersey: www.adherents.com/adhloc/Wh_232.html. Retrieved March 6, 2007. 2 Since I am trained as a Christian theologian, it is from and to that tradition that I speak. However, my first two scripture references will be to the Hebrew Scriptures, and I hope that my reflections on them will ring true to all people who hold those texts sacred, Jews, Christians, and Muslims. 3 Scriptural citations of the importance of hospitality from many religious traditions (Islam, Judism, Christianity, Hinduism, Janeism, Buddhism, and others) can be found here: www.unification.net/ws/theme141.htm.

Dr. Mary Beth Walsh is a Catholic theologian, Board member of The Association of Science in Autism Treatment, and parent of a child with autism.

“Communities of faith can mitigate the isolation that autism often brings. They can provide a place of solace and refuge. They can become a haven of acceptance and belonging for individuals with autism and their families.”

Autism and Faith

Presence is Important: A Hindu Perspective

Bringing up a child with autism is always a great challenge. Taking our son (he is 6-years-old now) to religious functions or other functions that take place in temples was and is a great challenge. Autism is not a common occurrence among earlier generations of Indians. Most do not know much about it. There are certain unique features of most Asian cultures, especially Indians, which actually work to our advantage. Indian families are generally very tolerant of unruly kids. They tolerate screaming and tantrums by their children very well and behave very much the same way when they encounter other children exhibiting difficult behavior. Many of the western classifications of child behavior such as attention deficit syndrome, hyperactivity, etc. (which some use to describe milder versions of the “dreaded” autism spectrum disorders) will be dismissed with contempt. The Indian viewpoint is: It is OKAY for kids not to be paying attention or hyperactive.... all these will disappear when they grow up. The truth is I have seen enough to accept that this is true from my experience. But kids with ASDs are a different matter. Our son actually likes to attend concerts and watch dancing, singing, etc., which are an integral part of celebrations at Hindu temples. Hindu temples are very social and lively places. There is a lot of talking, chatting, and chanting of Sanskrit incantations. Because of this, our son’s tantrums or screaming to leave the place sometimes are barely noticed. One reason could be he is very well behaved most of the time.... he would sometimes cry and want to be taken away. Those who notice just think of it as some extra sensitive child expressing his dislike of noise and crowds, but nobody seems to express resentment or intolerance. There was one occasion when the guy sitting next to me at a temple function wanted me to quiet my constantly squirming son. I told him that as he is not making any noise, he should concentrate on the function and not worry about my son’s restlessness. He was upset that I could not keep my son quiet and left with displeasure! Other than that sole incident, the Indian community has been very tolerant and helpful wherever we went with our son. We have had no hesitation in taking our son to temples for attending religious functions or routine visits for worship. We hope that at least this part of Asian culture survives so that parents of children with ASDs do not face additional difficulties in taking care of their children.

Mekala Ravishankarv is a parent who lives in New Jersey.

“Autism is not a common occurrence among earlier generations of Indians. Most do not know much about it.”

A Journey Into Community

Autism and the Family

Alice F. Walsh, M.Div. The door to the church building creaks open, then closes…opens, then closes. The lights in the fellowship hall flicker on and off, repeatedly, as four-year-old Jason makes his way into the church. From the other side of the room I hear these words, “I see Jason is in church today! Welcome, Jason, and family!” And my harried soul finds sanctuary…

Autism’s Impact on the Family

Getting ready to go to church on a Sunday morning is difficult for many families…the inevitable lost shoe, the misplaced jacket. However, when one of your children has a disability on the autism spectrum, that transition from home to church can be even more challenging. At times, the temptation may be great to stay home, to not inflict the uncertainty, or even pain, that such a transition may bring. But when you have been regularly worshipping with a particular faith community for many years, it feels natural to continue that affiliation when the autism diagnosis comes. And it is natural… except now everything is also changed.

Autism affects the entire family. A diagnosis of autism for one family member will affect the whole family system.

What are some of the ways autism affects a family? Adrienne Robertiello, a Roman Catholic parent in Scotch Plains, NJ, speaks of the overwhelming daily tasks and the resulting isolation:

Simple situations like haircuts, grocery shopping or community gatherings, and religious practice have quite a different outlook for families having members with autism. The minutiae of living encompasses challenges with family balance, demands on family members, depletion of time and energy, enormous strain on finances, ongoing frustrations and self-esteem issues, overburdened schedules with unending appointments, doctor visits, meetings, childcare, educational communications, and logistical coordination. Autism changes daily interactions, safety considerations, recreational activities, expenditures, and priorities. It puts a significant load on all relationships. Autism leaves families fighting to deal with emotional and spiritual confusion. With these tremendous burdens, families do not have the time, energy or confidence to search or ask for the help that they desperately need. These individuals need a source for coping and relating and finding spiritual direction.

A Faith Community’s Impact on the Family

Our faith communities can play a positive role in the life of the family. Communities of faith are natural places of support for families affected by autism. One mother decided that church might offer a perfect opportunity for inclusion, so she approached her church to find out what might be possible. She was welcomed, and her son was included in Sunday school. After a short time in which the mother sat in the class to be sure everything was going well, the coordinator of Christian Education said to her, “You are here to be participating in worship. We will look after your son.” (Note: This was the first time anyone had ever offered to care for her son without pay. This mother later became a member of that church, realizing that she was involved in a community of love.)

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Autism and Faith

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