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PDF versionAutism, the Mass and religious education
Oct. 15, 2009
Pat Marrin
Mission Management
How does the Catholic church respond to children with an autism disorder and to their families, especially when many parents fear that their child may act out during Mass, causing the family to experience rejection by other parishioners?
Autism is a complex developmental disability linked to neurological disorders in the brain. It typically appears during the first two years of life and affects boys more than girls. Symptoms include repetitive behaviors and difficulty with communication and social interaction.
Autism is the fastest-growing developmental disability in the United States, with reported cases growing at a rate of 10 to 17 percent a year. The Autism Society of America estimates that there are 1.5 million -- or one in every 150 children -- with an autism disorder. Autism costs $90 billion a year, according to the society.
Two dioceses have developed programs that model how the church can welcome families with autistic children, with the goal of greater inclusion, and preparation for and reception of the sacraments. One program, designed over the past few years in Newark, N.J., is the work of a determined archdiocesan director. The other, underway in the Pittsburgh diocese, was started after an incident in which two children with autism disorders were denied Communion.
Anne Masters, director of Pastoral Ministry with Persons with Disabilities for the Newark archdiocese, asked religious education teachers what they needed in order to teach children with autism disorders. They told her, “Tell us what to teach and how to teach it.”
Masters began researching autism and turned to experts from the community. “Like St. Paul, I tried to identify and use the gifts of the community,” she said. She created an advisory board of 15 people with expertise in behavioral science, language, catechetical training and related fields.
Masters said her driving ambition was twofold: to affirm the baptism of people with disabilities as members of the church and to teach parishes and catechists to include disabled people in the celebration of the Eucharist and in religious education.
To foster this, Masters designed learning aids. She created “Attend Mass” materials that parents can download and personalize.
She created 10 “parent-to-parent” tips for inclusion in the parish. For example, the tips encourage parents to meet with the pastor in advance; provide educational materials on autism for the parish; practice parts of the Mass with their child; and come prepared with an effective but discreet motivation strategy to limit distracting or disruptive behaviors.
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Finally, a support group for mothers was formed with the help of a psychologist. One issue they deal with, Masters said, is the need “to let go of the child they dreamed of while pregnant by acknowledging the sadness and anger.”
In 2007, Masters and her volunteers began working with two kids and their families.
Among them are Regina Cioffi and her 8-year-old son, Thomas, who has an autism disorder. Her repeated attempts to get help from her parish left her frustrated. “I was close to converting to Buddhism,” she said. With Masters’ help, Cioffi got necessary educational materials and was introduced to the mothers’ group.
Thomas is now scheduled to receive his first Communion next spring. Cioffi’s friends from the support group helped her through an unexpected illness. The director of religious education from her parish brought her Communion and became a good friend. “They have made a tremendous difference in my life and the life of my son,” she said.
This November, Masters will be working with seven children and their families.
In the Pittsburgh diocese, when two children with an autism disorder were denied Communion, Larry Sutton, a deacon and psychologist, began to address the sacramental and educational challenges of children with an autism disorder.
Sutton serves as the western regional director for the Pennsylvania’s Bureau of Autism Services. He is also active in the National Apostolate for Inclusion Ministry.
In 2006, Sutton’s suburban Pittsburgh parish with over 2,000 families, Our Lady of Grace, initiated for kids and adolescents with autism disorders a sacramental preparation program for the Eucharist, reconciliation and confirmation. Participants come to a one-hour class every Sunday morning in the school library.
Sutton modified the Rose Fitzgerald Kennedy Catholic religious education curriculum designed for people with special needs. Children with an autism disorder learn through visual processing methods and hands-on techniques rather than traditional methods. “Pictures and social stories enable kids with an autism disorder to understand a concept,” Sutton said.
While the kids are in class, their parents are required to meet to go over their child’s study materials and to receive homework assignments. The sessions bring all the children’s parents together to exchange information and support one another.
A key to this program, Sutton said, is getting typical-learning high school students to serve as catechists, preparing them to teach one-on-one with each child. For Communion, the children practice by receiving a host and drinking from a chalice.
For the sacrament of reconciliation, parents of students without language skills were asked for examples of good and bad behavior and then picture cards were created. “We then worked with the child to understand what behaviors were bad and needed to change,” Sutton said.
Tim Hallahan, whose 15-year-old son, Sean, has an autism disorder, said that Sutton’s program has worked remarkably well. “Unlike a traditional learning environment, Sutton stresses a relaxed atmosphere which did not startle Sean,” Hallahan said. Sean was confirmed last year.
Hallahan and his wife now co-chair a parish-sponsored “Ventures Group,” which organizes field trips through the Boy Scouts for older teens with autism disorders. “All of this grew out of Sutton’s program,” Hallahan said.
In 2010, Masters expects to have enough documented experience, feedback and analysis to design a systematic plan that can be replicated in over 200 parishes in the archdiocese.
“It’s really exciting,” said Masters. “It’s going to happen, as the Holy Spirit is clearly working.”
Tom Gallagher is a regular contributor to NCR. Ideas for a “Mission Management” story? Contact him at tom@tomgallagheronline.com.
For additional information
For the autism program in the Newark archdiocese, see www.rcan.org, then click on Ministries/Offices, then click on Ministry with Persons with Disabilities.
Autism Services in Pennsylvania
www.autisminpa.org
National Catholic Partnership on Disabilities
www.ncpd.org
National Apostolate for Inclusion Ministry
www.nafim.org
Autism Society of America
www.autism-society.org
Autism Speaks
www.autismspeaks.org
This article refers to
This article refers to children with autism disorder, and I applaud the efforts of these two dioceses. However, children with autism disorder is a term usually used for higher functioning children, often children who are in inclusion programs and who can learn by the methods described. Is anything being done for children who are lower functioning, those who are confined to life skills classrooms in public schools or who cannot attend public schoold at all? Are these children to be denied the healing power of the sacraments because of their inability to learn how to hold their hands right? In my parish, we baptized one of these lower functioning children and it took 7 people standing in a ring around the family and the font to make sure she didn't bolt. This is a child who would never be able to be included in the programs described.
I am a para professional who
I am a para professional who teaches autistic children in the public school system daily. Being a Catholic Christian, I believe that lower functioning children on the spectrum should not be denied the sacraments. Perhaps with a trained one on one para who would like to volunteer come into your home once or twice a week to teach your child the very basics, let's say for Communion, using only a 15 to 20 minute time slot at the most, with pictograms, may be a start. See what your parish has to offer. If you are at a roadblock, St. Peter's Church in Warwick, R.I. did start a program for this which I, myself, am looking into. IF the diocese agrees, you may also want to teach your child yourself at home with whatever guidelines your parish says is ok as far as knowledge in the sacraments. Check with your priest. Good luck and God Bless. !
Hello, Yes, work is being
Hello,
Yes, work is being done with children/people who are considered "lower functioning" or "more involved on the spectrum." Most of the children we have worked with in "Attends Mass" attend schools or programs specifically for children with autism and are not in inclusive education settings. Tom did a great job assimilating a large amount of information on a subject that is vast and at times contraditing. Relative to Attends Mass discussed in the article, it is probably more accurate to say "process" rather than "program". It is a program in that it is geared specifically for children with autism who do not attend Mass with their families. As such it does have specific recommendations, strategies and suggested resources. However, flexibility and adaptability are intrinsic to its design and it continues to grow and develop as we work with more children.
Without more information about the particular learning needs of the girl you mentioned, I can think of two different possibilities. The first is to develop a plan that prepares her for celebrating Baptism at the Baptismal font using strategies that help her learn new skills for new environments. The second would be to identify an alternate celebration of Baptism that would be more appropriate for her and the corresponding plan for preparation. With both options, both her parents and teachers would be very helpful in making recommendations. For specific strategies, her teachers would be the most helpful as they are professional educators. Even when teachers can't help directly with the preparation, they are always happy to share what they know about the particular child and successful strategies based on his/her learning needs. Parent approval is required for this, so I ask the parents to talk to the teacher directly and give my contact iformation. Then, either the teacher calls me or provides a number for me to call him/her.
As the girl is already Baptized, the above discussion is academic to a point, but is still valid for further Sacrament preparation. I would also be happy to talk with you further based on more specific information if you wish, either by email or phone.
As a general comment, it is important for me to note that that the Church provides much flexibility in adapting for preparation and participation in the Sacraments and ongoing catechesis for people with disabilities. In fact, the US Bishops tell us, "to err on the side of inclusion." (Guidelines for the Celebration of the Sacraments with Persons with Disabilities,20. USCCB, 1995, 2002. ISBN:1574554255.) I wrote a one page document, "The Sacraments of Eucharist, Reconciliation and Confirmation for People with Developmental Disabilities: A brief discussion of determining readiness" which you can read at http://www.rcan.org/images/dpd/Discussion%20of%20Readiness-Link.pdf. It is based on the document referenced above and Canon Law.
There are a number of resources and references on the ministry webpage, www.rcan.org/disabilities. It is a work in progress and tends to be updated in batches. However, I am happy to share things with people. I just ask for feedback on usefulness and source identification. When putting in the website address into your browser, your computer will translate it to http://www.rcan.org/index.cfm?fuseaction=category.display&category_id=96 which is very difficult to remember, but apparently more accurate. (I had to use it as the reference in the homepage section of this form in fact. It rejected the more user friendly version!)
Yours Sincerely in Christ,
Anne Masters, MA
Director, Pastoral Ministry with Persons with Disabilities, Newark Archdiocese
973-497-4309 masteran@rcan.org
I want to know what is being
I want to know what is being done for lower functioning children, children who cannnot learn by the methods described, the children who are confined to life skills classrooms or may not be in public school at all. Are they to be denied the healing power of the sacraments?
I suppose each case is
I suppose each case is different, but I always thought the Mass would be a naturally beneficial religious experience for those with developmental disabilities, since there is so much going on and whatever sense is particularly meaningful for the person will most likely be engaged.
A "naturally beneficial
A "naturally beneficial religious experience"? I don't mean to be unkind but do you have any personal experience attending Mass with a child with autism spectrum disorder? You must be picturing the stereo-typical happy child with Down Syndrome seen on a poster. (I know their parents will tell you that their child does not look like that 24/7.) Try being the parent attending Mass with your child knowing that he could start yelling or bolt for the door at any moment. And when he does shout out, face the glares from your fellow parishioners. "What's wrong with him, any way?" I have been asked.
And, there is "so much going on"? No there is not! The readings mean nothing to him. The homily means even less. Going to communion is the only part he actively takes part in and that ten minutes from the end. Wipe off your rose-colored glasses, put down your bouquet of daisies, and get real.
I was actually confessing my
I was actually confessing my ignorance. I had always assumed mass would be engaging for people with various disabilities. Having read the article, I realized otherwise, and I wrote as such. I know typing is not inflected, but the principle of a charitable interpretation might be nice here.
Dear Mary, I know many
Dear Mary,
I know many parents who can relate very easily to what you describe. Some have been asked to leave or suffered through glaring stares, one mother was told, "he doesn't belong here," when she turned to the woman next to her and said, "Peace be with you!" I would be happy to talk with you about your specific situation if you wish.
I am sorry for not responding sooner. I thought people would contact me directly with questions or comments, and I didn't think to check for comments to the article. Having an article discuss my work in such a public audience is a new experience for me.
Yours Sincerely in Christ,
Mary, after losing a reply to
Mary, after losing a reply to another comment 3 times (!), I saved my reply to you before including contact information and it went away - presumably to be proofed for posting. I guess "save" means "submit!" You can reach me at 973-497-4309 or masteran@rcan.org.
pure Spirit of Vatican II at
pure Spirit of Vatican II at work!
I suppose some parishes in the anglo USA just use the "Cryers' Room" with the big plate glass window?
In Mexico kids can just wonder around as they require, with everybody joyfully welcomed.
even me . . .
most of the time
frère charles du désert OSB OBLAT (Congrégation de Subiaco)
We have one young woman in
We have one young woman in our parish who has special needs, and she pretty much does wander about while her parents and siblings are walking up to receive Communion. Nobody appears to be bothered by her, and I, for one, get joy out of seeing her so happy walking down the middle of the aisle while everyone is lining up. The only bad part is if she can't find her family and starts to get upset, and that's only because I feel bad for her, and she doesn't respond well to strangers trying to guide her to where they are. She belongs in God's house as much as anybody, maybe even more.
A number of dioceses have the
A number of dioceses have the SPRED program: (SPecial REligious Development). It was started in Chicago in 1960 and now is in 12 cities in the US, and an additional 16 cities throughout the world. I have a 24 year old son with Fragile X Syndrome, a genetic developmental disorder, and we lived for many years in Chicago. My husband was a helper catechist in SPRED before we knew our son had disabilities. Our son received his sacraments (1st communion and confirmation) at one time through the SPRED program.
He is more social than many with straight autism, although FragileX is the most common genetic cause of autism. Having him in church is difficult and we just didn't bring him for years, but we bring him with us regularly now. He wants to talk to everyone (he has a mental age of about 5 or 6) and people ask where he is when we don't bring him. But, due to SPRED, we started out with a category for a separate program for his needs, and inclusion most of the time.
See www.spred.org. Fabulous program if you have one anywhere near. We are going to try to begin a center in the Richmond, VA diocese somewhere along the way.
There SPRED programs in Oakland, CA; Chicago and Joliet, IL; Evansville and Indianapolis, IN; Portland, ME; Saginaw, MI; Milwaukee, WI; Kansas City, MO;
Scranton, PA; Providence, RI; Arlington, VA.
This article is amazing! I am
This article is amazing! I am a catechist in a university parish in the midwest who "fell into" teaching an autistic boy because I was the only catechist who had had any expereience working with developmentally challenged children. I am so glad to see that this ministry is growing. I think that it is an extremely important part of the Christian mission of reaching out to all people espescially children. I believe God loves and cares for these kids in a special and unique way and they need and deserve religious education curricula that is specifiecally geared to their unique needs and challenges. Thank you!
I have asperger's syndrome
I have asperger's syndrome and I grew up prior to Vatican II. I was dragged to mass every Sunday and forced to participate. By the time I was 10 years old I suffered from such intense scrupulosity that I wished I were dead so that I wouldn't have to worry about sinning any more. I was told to find a good confessor and trust in the mercy of God, which was the standard remedy offered to those suffering from scrupulosity, but I found the only real cure for me was to leave the Church. I've tried a few times to go back but every time become tortured by scruples again.
Autistics who have language capability tend to take words very literally, and I now realise that this is the cause of my scruples. I got to wonder about some people saying disabled people shouldn't be denied the healing power of the sacraments. For me, the sacraments were torture, and the real healing was leaving the church.
I am so sorry to hear about
I am so sorry to hear about the pain that you have experienced. When adapting materials to use with people with autism, I work very hard to simplify based on his/her needs, while maintaining accuracy of meaning.
I am glad to hear that you have gained perspective that it was an issue of understanding rather than an issue of your sinfulness. I hope you are also able to find peace with God.
Yours in Christ,
Anne Masters, MA
Director, Pastoral Ministry with Persons with Disabilities, Newark Archdiocese
973-497-4309 masteran@rcan.org
I know I'm posting late on
I know I'm posting late on this (6/2010) but am looking for info. My son is in a residence for young men with autism. These guys are "involved" - not Asbergers, not HFA. Recently at a parent meeting I pushed for the operating Agency to support residents wishing to attend Mass. The other parents told true tales of terror about their relationship with the Church after their son's baptism... bottom line: after much searching a Parish has agreed to undertake an RCIA program in the residence. Has anyone done this before? if so, any guidance?
BTW, this is just the beginning - there are many, many similar cases, at least here in predominately Catholic Staten Island, NY. . .
I would be happy to talk with
I would be happy to talk with you about some possibilities.
You could get some ideas of possibilities in checking out resources listed on my webpage, www.rcan.org/disabilities under "Catechetics." "Guidelines for Special Needs in Catechesis" and "Conversations with Parents" would be helpful starting points and give you an idea of things to consider relative to developing appropriate strategies for the process. However, as you know, with adults it gets more involved based on what their experiences have been. So much has been learned about educating people with autism, yet an adult who has not had the benefit of those strategies will take longer to learn even when they are used.
Relative to content of information, some general suggestions could be developed from reading "Celebrating the Sacraments: A Discussion of Readiness." It is a one page document based on the US Bishops document, Celebrating the Sacraments for People with Disabilities and Canon Law. The link is
http://www.rcan.org/index.cfm?fuseaction=category.display&category_id=96.
From your reference to some parents stories of horror, I will say that I know many parents/families who have struggled with living with autism and did not find the solace they sought in the Church. Walking with these parents in their spiritual journey is an important part of my work also. In the Newark Archdiocese,we have two groups for mothers and one for dads that seek to bring them together and support each other, as well as provide an opportunity for the Church to walk with them in whatever way will be helpful. The groups for the moms is very different than the group for the dads, because of the different needs of men and women.
I wish you well, and would be happy to talk with you and/or the parish you would work with, either by phone or email.
Yours Sincerely in Christ,
Anne Masters, MA
Director, Pastoral Ministry with Persons with Disabilities, Newark Archdiocese
973-497-4309 masteran@rcan.org
I have been teaching and
I have been teaching and directing a Spred Program here in Vermont for the past four years. Most of our students have been with the program for more than 25 years. They are in their 40's and 50's. They just love the support and understanding the program gives them. We help them to understand the Gospel each week. My problem is I'm running out of ideas for lessons. They are a adult group and I like to treat them as such. I did a group of lessons on "What Would Jesus Do?" We had a few lively conversations and it was great. I based them on the parables.
Our meetings were held at the diocese and little was known about us. Since then the building is being sold so we are now joining a parish. This will open us up to others and the starting of some younger groups in the future. Is there a place I can send for lessons? We had some very old ones and they were too child like and done many times. I'd appreciate any helpful advice. I wish you all could attend one of our sessions. These adults have grown so much in there faith and are such beautiful people, thanks to this program.
Sincerely, Lana Szczerbak. (Lszczerbak@aol.com)
How about teaching something
How about teaching something cutting edge, such as how quantum physics is the science that shows how we are all connected, just like the message from God. Do something the church should be understanding and incorporating, instead of the continued Newtonian paradigm.
See if you can talk about all of the healing messages throughout the bible, which includes for people suffering from state of autism Remove the labels and it will bring deeper healing from this condition, which is not part of God's intention for any human being to live trapped and disabled.
Leave newtonian based science behind and make teh bridge between science and healing through the catholic church. People do things that amaze when the motivation is tapped into and finally keys to the doors unlocked.
God Bless all that believe in equal rights for all people regardless of their afflictions.
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