Vatican Presentation
Pontifical Council for Health Care Workers
XXIX International Conference
The Person with Autism Spectrum Disorders: Animating Hope
Vatican City, 20-22 November 2014
Janice L. Benton, Executive Director
National Catholic Partnership on Disability
Washington, DC, USA
Your Holiness, Your Eminences, Excellencies, Clergy, Religious, and Brothers and Sisters in Christ, it is a great honor to be with you for this important international gathering at which we are considering the needs and gifts of individuals with autism and their families. The theme of this conference: “The Person with Autism Spectrum Disorders: Animating Hope” calls us to view autism in ways that may be new for many of us. In sharing community experiences from America, I will look at how—and whether—hope is being animated in our parish communities. Of equal or greater importance, we will consider the ways in which individuals with autism and their families are a source of hope to our beloved Church and to each of us. I am grateful to Professor Daniela Aguila of Argentina and other parents from Central and South America whose sharing yesterday filled in important information and insights about existing and needed programs and services throughout the continent of America.
Inherent Dignity of Each Person
We are very blessed by the teachings and Tradition of our Catholic faith, which affirm the dignity of every human person, born in the image and likeness of God. The bishops of Latin America and the Caribbean, in their Fifth General Conference proclaimed, “that all human beings exist purely and simply by the love of God who created them and by the love of God who preserves them at every moment….the Lord is author and master of life, and human beings, his living image, are always sacred, from their conception, at all stages of existence, until their natural death, and after death. The Christian view of human beings makes apparent their value, which transcends the entire universe.”i Saint John Paul II noted: “God has shown us unsurpassably how he loves all human beings, and thereby confers upon them an infinite dignity.”ii Further, His Holiness Pope Francis affirms that “to believe that the Son of God assumed our human flesh means that each human person has been taken up into the very heart of God.”iii
The question before us is whether individuals with autism and their families experience this dignity and love within their faith communities. Do they feel of “inestimable value…masterpieces of God’s creation, made in his own image, destined to live forever?”iv Are they truly “willed…loved…and necessary”v as proclaimed by His Holiness Pope Benedict XVI? Do they find the open doors called for by His Holiness Pope Francis in Evangelii Gaudium: “The Church is called to be the house of the Father, with doors always wide open….Everyone can share in some way in the life of the Church; everyone can be part of the community, nor should the doors of the sacraments be closed for simply any reason.”vi Do we as Church leaders and pastoral ministers feel “impelled by mission to bring to our people the full and happy life that Jesus brings us, so that all human persons may live in accordance with the dignity given them by God”vii as called for by the bishops of Latin American?
The Diminishment of Hope
I encourage you to consider an important distinction between “inclusion” and “belonging” which has begun to be articulated in the United States. When people are “included” they are “allowed in” based on the goodwill of those in charge. There is the possibility of “exclusion” for any number of reasons including lack of preparation, budget concerns, fear, and disinterest. A sense of “belonging” on the other hand recognizes that “the Lord is God; he made us, we belong to him”viii and that by virtue of our Baptism, we belong.ix As a mother of a young woman with significant disabilities explained, “Before I read the bishops’ Pastoral Statementx I thought that my parish offered our family three ‘B’s’—Baptism, back of the Church seating, and burial. But after reading the Pastoral Statement, I understood that the Church offered my family ‘belonging.’” The statement referenced by this mother was written by the Catholic bishops of the United States in 1978. The profound truths of this and subsequent documents continue to touch hearts and direct our ministry with people with disabilities in dioceses throughout the United States. One such document from the U.S. bishops is the Guidelines for the Celebration of the Sacraments with Persons with Disabilities, which provide pastors, pastoral workers and parents with assistance in preparing and welcoming individuals with autism and other disabilities to the Sacraments. The bishops voted at their November 2014 annual meeting to revise these guidelines to address issues which have developed since they were initially approved in 1995.
Regrettably, many individuals and families are not finding such belonging in their parishes. In a brief survey conducted throughout the United States by the National Catholic Partnership on Disability (NCPD), countless stories were shared of pain and sorrow experienced within faith communities. Following are but a few of the answers shared regarding parish experiences of hurt or hopelessness:
“A parishioner on the spectrum tried to join a lay religious group and was turned down. She has tried desperately to find a place to fit in and belong—unfortunately, she is shunned by others.”
“My son, who is on the spectrum, was trained and served as a Eucharistic Minister at our parish. When we moved to a new parish and he tried to volunteer his services, his attempts were criticized by some parishioners, based on not living up to certain standards within the parish.”
“I attended Catholic school from kindergarten through college, became a Catholic school teacher and administrator, yet there is not a place in the Catholic school system for my son.”
“It is a sad experience when the pastor, priest or lay leaders place insurmountable obstacles in the way of families with children with autism spectrum disorders.”
“The lack of a parish policy on inclusion in faith formation makes families feel hopeless.”
“My family and I feel like we’ve been forgotten by the Catholic Church in general. We can build huge beautiful churches but we can’t hire at least one special education teacher to work in our Catholic schools.”
Many families reported the struggles they faced when requesting the Sacraments, and often they complained of having to drive long distances to participate in an accessible program. By far the most often shared “hurt” was the experience of stares and unfriendly looks received by parishioners as the family attempted to attend mass together. Others complained of isolation and shunning.
Several other ironic reflections were received in response to our request to share a best story of how hope was animated: “I wish I had some,” “I have yet to experience this,” “There is no hope in my parish.”
In addition to these negative experiences encountered by many families and persons with autism there is a much larger threat to their dignity, and in fact, to their very existence—the scientific efforts currently underway to identify the genetic markers that would allow for the prenatal identification of autism. As we know, Servant of God Dr. Jerome Lejeune’s ground-breaking discovery of the gene responsible for Down syndrome has led to the ability of the medical community to identify the syndrome prenatally, resulting in a current rate of abortion of between 80 to 90 percent. Dr. Lejeune, a devout Catholic, and the first President of the Pontifical Academy for Life did not anticipate, nor did he intend, his discovery to lead to such horrific consequences. We fear that a similar fate awaits those identified prenatally with autism.
Another perspective regarding research is expressed by some adults on the spectrum who resent funds being spent on research to “cure” them rather than on community-based supports and services, which would enhance their ability to participate in society. They note that “Research priorities should focus on areas that have the most potential to improve the daily lives of Autistic people, such as communication and assistive technology, best practices in providing services and supports, and educational methodologies.”xi
Hope Animated
Thankfully there is much more to the story. Hope is being animated throughout the Americas in parishes that recognize the gifts and potential of each person. When parishes are open to responding to the real and perceived challenges raised by parishioners with autism and their families, the gifts and graces of the Holy Spirit are poured out in countless ways. When the parishioner with autism is seen as a valued member of the community rather than a problem to be solved, the entire parish is blessed and experiences anew the infinite love of God. The families and pastoral workers who answered NCPD’s survey shared examples of positive experiences as well:
“Our son has always been welcomed by the choir director and members. There is always a place for him.”
“The editor of our diocesan newspaper has a son with autism. Each week she features positive stories of individuals with autism and other disabilities, which is building awareness throughout our diocese.”
“In our parish we experience people sharing their gifts of music and other talents.”
“We accepted into our religious education program a young boy who had been rejected by another parish. On the day of his first communion, he walked with his parents to receive Jesus for the first time. His dad looked over at me, with tears in his eyes. What a beautiful moment.”
“Our parish hosted listening sessions from which grew ideas for improving ministry.”
“Through adapted liturgies (both English and Spanish) whole families are returning to Church. One family said, ‘Church is the only place we can go as a family.’”
“My son is 16 but mentally 2 or 3, on the autism spectrum, needs to be bathed, diapered, dressed and mostly fed....But his laugh lights the room and he has taught me the meaning of unconditional love, faith that there is a reason for all that comes to us, grace and the sanctity and glory of all life. Regular Mass was too much for him—the number of people, the volume of the singing, the length, the looks of disapproval for making involuntary sounds from the other parishioners...but we found the Adapted Liturgy at a parish in Portland, OR and we were forever changed. Once a month a special Mass is held—lights are low, singing and music are beautiful but not overwhelming, it is a small group of people—and most magically of all...our special loved ones can be themselves. If they speak out or yell or move strangely people smile and don't judge. We can celebrate difference and pray for strength without pity but with smiles. Garrett goes to this liturgy and SMILES—he lays his head quietly on my shoulder and just *is* and in that moment I know God is with us.”
In addition, we are witnessing creative efforts and dedicated service on the part of many pastoral leaders to ensure meaningful participation in a life of faith.
Catechists and catechetical leaders are trained to meet the individual needs of each child. When preparing a child for the Sacrament of Eucharist, a catechist will work with the child to learn to distinguish between the Eucharist and ordinary bread.
Publishers are increasingly creating practical and beautiful tools, offering hands-on kits, catechist guides and website tips in both English and Spanish to help children on the spectrum attend mass and prepare to receive the sacraments. One U.S. publisher published a kit for preparation for the Sacrament of Eucharist which was originally designed by a young Boy Scout as part of his Eagle Scout project. This young man wanted to design a way for his sister with autism to be prepared to make her first communion.
Catholic universities offer courses of study to train future teachers and catechists to work with students with disabilities.
Numerous dioceses and parishes offer programs for individuals and sometimes families, including week-long camps, days of prayer, annual retreats, and respite evenings or days.
Throughout the continent, and indeed the world, L’Arche provides faith-filled homes while Faith & Light invites individuals with autism and other developmental disabilities, their families and friends into loving communities of faith.
In continents throughout the world, the Catechesis of the Good Shepherd is an approach to faith formation which engages all of the senses. The sacred environment, known as the atrium, is particularly suited for children on the autism spectrum as they grow in their relationship with God.
Needs and Priorities
More can be done to continue this process of animating hope in the lives of individuals with autism, their families, and our parish communities.
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Acceptance
Many of these actions need neither a large investment of money nor the creation of new and involved programming. Rather, they require of clergy, seminarians, pastoral leaders and parishioners awareness and a deep commitment to accept those with autism and their families as brothers and sisters in Christ, recognizing their place within the Body of Christ.xii We must follow the admonition of the U.S. Catholic bishops in their 1978 Pastoral Statement, “We call upon people of good will to reexamine their attitudes toward their brothers and sisters with disabilities and promote their well-being, acting with the sense of justice and compassion that the Lord so clearly desires. Further, realizing the unique gifts individuals with disabilities have to offer the Church, we wish to address the need for their integration into the Christian community and their fuller participation in its life.”xiii The bishops also noted: “For most Catholics the community of believers is embodied in the local parish. The parish is the door to participation for individuals with disabilities, and it is the responsibility of the pastor and lay leaders to make sure that this door is always open.”xiv The bishops of Canada further affirmed, “The emerging and growing sensitivity of the parish community to all its members, including [those with disabilities], opens many new liturgical doors for authentic worship….The ministry of [those] disabled to, for and with the praying parish community is one in which the beautiful uniqueness of all is celebrated. The special gifts of all, including [people with disabilities], help a chorus of praise and thanksgiving rise to the God of all life.” xv
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Support for Families
Every parish has families that include members with autism, and their presence holds significant implications for the New Evangelization.
We must acknowledge the emotional trauma that families encounter when a child has been diagnosed with autism. Having anticipated a healthy, happy child, parents encountering a diagnosis of autism now face a life-changing reality. At this moment the parish community has the opportunity to respond to this pain in a Christ-like manner. How the parish responds determines whether that family will feel embraced by the community, or cast out to cope alone.
Many families leave a parish, and even the Church, when they experience such rejection. Conversely, parishes that are welcoming and accommodate individual needs draw families who yearn to live out their faith.
Following is a brief reflection from a mother describing some of the stresses experienced by her family:
“My experience with disabilities was very limited prior to having Danny. The family dynamic when you have a child with autism is impacted greatly. To say that there’s a lot of stress would be a tremendous understatement. You know, there is always a balancing act when you have four children or any number of children that’s more than two. Right now, Danny’s friends and peers—well, his friends are few, very few and that’s a very painful part of being a parent of a child with autism. Our experience at mass now as a family is much better than it was when he was younger. Our experience with mass with Danny was actually a very big problem and it caused a huge stress on my husband and me. He would act out and draw attention to himself at mass and my philosophy was ‘we have to stick it out, we can’t remove him from church every time he acts out because then he’s getting exactly what he wants.’ My husband and I didn’t agree but we did find a way to compromise and we started out by having him many times stand in the back of the church and if he got through a certain amount of time behaving that way you know then we kind of just kept taking little steps at a time until he was finally able to sit in mass and not act out.”
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Pro-active Parish Practices
I am pleased to report that a great number of parishes are taking pro-active steps to welcome and embrace persons with autism and their families. An important first step is developing awareness on the part of the parish community about the unique characteristics of persons with autism and issues they and their families face. Providing accurate and understandable facts about autism to the parish community helps to alleviate fears that may arise and promotes understanding of the characteristic behavior exhibited by persons with autism. I have witnessed several effective ways that parishes seek to raise awareness about autism: (a) conducting educational workshops on autism open to the entire parish community; (b) specifically including autism in prayers of the faithful at mass; (c) developing pew cards detailing facts about autism and the challenges faced by individuals with this disability; (d) articles in the bulletin, and most importantly (e) inviting persons with autism to share their story with their faith community.
In many dioceses and parishes, faith formation policies are being developed specifically to address the unique learning styles of persons with autism, as well as programs for preparation of the Sacraments. One such program involves employing peer mentors to journey with their teen counterparts with autism who are participating in faith formation activities. Parents are included in the program, meeting together in prayer and support. Parishes likewise provide needed accommodations to enable active participation, including, but not limited to, physical access to the church, sanctuary, and other parish facilities, sign language interpreters, Braille and large print resources, and adequate lighting.
Another critical piece to ensuring pro-active parish practices is that of training staff who will interact with persons with autism and their families, which really includes all parish staff and volunteers. I once was conducting training for staff at a parish in my archdiocese that has exceptional outreach and support for their members and families with disabilities. In the midst of my talk, I was asked by the pastor’s administrative assistant why this training was even needed given that the parish was already doing a good job. I turned to the pastor for a response, and he paused and then answered, “I don’t want people with disabilities and their families to hear ‘no’ from our parish. Our staff needs to be prepared. We need to say ‘yes.’”
Animators of Hope
Clergy, religious, seminarians and deacons play an essential role in animating hope. Through homilies and pastoral support they can enliven the parish with a spirit of welcome and belonging, following the witness of our Holy Father Francis who demonstrates over and over his caring and love through his prophetic example, words and actions. By modeling such an attitude of welcome and belonging for our faith communities throughout the Church, priests, religious and deacons are leading by their example in ways that will further the acceptance and embrace of persons with autism and their families.
More importantly, we need to recognize and affirm people with autism as animators of hope for their families and our communities, “called to exercise the mission which God has entrusted to the Church to fulfill in the world, in accord with the condition proper to each.”xvi They demonstrate the wisdom proclaimed in 2008 by His Holiness Pope Benedict XVI in an address to young people with disabilities in the United States: “God has blessed you with life, and with differing talents and gifts. Through these you are able to serve him and society in various ways. While some people’s contributions seem great and others’ more modest, the witness value of our efforts is always a sign of hope for everyone….God’s unconditional love, which bathes every human individual, points to a meaning and purpose for all human life.”xvii They reflect the truths shared in the 2005 National Directory for Catechesis: “All persons with disabilities have the capacity to proclaim the Gospel and to be living witnesses to its truth within the community of faith and offer valuable gifts. Their involvement enriches every aspect of Church life.…They are not just the recipients of catechesis—they are also its agents….Every person, however limited, is capable of growth in holiness.”xviii
Many here may have never experienced people with autism in this way. We often fail to consider another person’s gifts, particularly if they are nonverbal or their disability is significant.
One such person who lovingly shares his gifts and light is Larry Thompson, son of my colleague, Dr. Nancy Thompson. Larry is on the autism spectrum, and is one of the oldest living persons with a rare genetic condition causing multiple congenital anomalies, intellectual disability and fragile health. He is a faith-filled Catholic who has served in his parishes over the years as an altar server, greeter, usher, and now as an extraordinary minister of the Eucharist. He has befriended the bishops of the dioceses in which he has lived, and has a special ministry of praying for bishops, cardinals and our Holy Fathers. Larry is a 2nd degree Knight of Columbus, and enjoys the fellowship and service shared with his fellow Knights. Nancy was told by a young couple from one of their parishes that they were tempted to have an abortion when advised to do so by their doctors because of the poor pre-natal diagnosis they had received. Then they remembered Larry at Mass and his happy family and that gave them the courage to refuse the abortion and give birth to their baby. Larry’s gifts and Christ-like light saved that baby’s life.
Another young man with more significant disabilities animates hope among his family and friends. His mother recently shared the following reflection with me: “I am a blessed mother of a beautiful nonverbal child with profound autism and adolescent onset seizures. He is my light and my inspiration. When faced with the challenges of autism I will not despair. Isolation, financial burden, and the utter lack of help are met with hope. Hospital bedside prayers gave me strength. Gratitude gives me comfort and every day is a gift. Faith is my salvation and my life is joyful. I don’t presume to know God’s plan for me and am in awe of his guiding hand along my path.”
I would like to conclude with the transcript of a video clip of a young adult with autism, Danny, who shares his thoughts on faith and his love of God. Also featured is Danny’s mother, Loretta, who was quoted above under “Support for Families.”
Transcript of video clip:
Danny: I like to read. I like practicing the piano. I play sports like basketball and baseball, hockey. I like to serve, I like to receive communion at mass.
Interviewer: Are people friendly to you at church?
Danny: Yes.
Interviewer: What do people say to you when they see you at church?
Danny: Hi.
Loretta: The gifts that Danny brings us are many. He is just a really nice person, he’s a gentle soul, he shows us a lot of love. He teaches us how to love when it’s difficult. Danny has on occasion sung at mass and there have been some very special moments at church.
Interviewer: Is there anything else about mass that you really like?
Danny: I like to serve, I like to, I like bread.
Interviewer: Do you like to receive communion, is that what you’re trying to say?
Danny: Yeah, I like to receive communion at Mass.
Interviewer: What do you say to God for help?
Danny: God, I need help.
Loretta: I really think that he wouldn’t be so willing and actually outspoken about his desires to go to church and go to religiously-oriented events and to be willing to say the rosary and to do those kind of things if he wasn’t somehow feeling the love of God and the love of his family because of our faith.
Loretta: My faith to me is a source of strength and comfort. That’s really it in a nutshell. Without it, I can’t even imagine what life would be like.
Danny: I like to receive communion at Mass, I like to go to mass, just to pray in the tabernacle, for God.
Thank you for this opportunity to speak with you today. May God bless all of our efforts to build his kingdom.