57 countries will update one another on such issues as genetic research, pain management and government policies toward people with autism.
It will also begin with a Mass and a monsignor preaching on suffering and will include presentations on how the church can better include autistic people in the core aspects of Catholic life, such as the sacraments of confession and Holy Communion. It will end with an audience Saturday with Francis, an event advocates hope will significantly move the needle on awareness, particularly in Spanish-speaking countries.
Bob and Suzanne Wright, Catholics and co-founders of the major U.S. advocacy group Autism Speaks, will give a presentation at the conference.
“We speak at colleges and places like that, but they don’t reach large audiences,” said Bob Wright, former chairman of NBC/Universal and grandfather of a teenage boy with autism. “Then we started with the religious aspect, but the problem is there aren’t any leaders who have large numbers. Most religions are split up. We zeroed in on the pope, and this pope in particular, because he has such a gift for reaching out to people, and he wants the church to be more inclusive.”
The church’s role is also sensitive. So much research goes into preventive medical discoveries, which could lead to a genetic marker for autism that could then lead to more abortions — similar to what has happened with Down syndrome.
Janice Benton, executive director of the Washington, D.C.-based National Catholic Partnership on Disability, will be presenting at the conference and said she plans to raise the topic.
“That’s a concern we have, and I think most people [at the conference] will be in the same place,” she said of the ethical issues. “A lot of research is going to prevent and to cure. And adults with autism who are self-advocates prefer the idea that research will also help with community-based supports versus trying only to find a cure. . . . The community wants to support the people who are here now. We felt that was important to raise that.”
The archbishop convening the conference acknowledged the topic Tuesday at a Vatican press conference announcing the event.
“The many difficulties, including those of an ethical, moral and spiritual nature, faced by those with autism spectrum disorders and their [caregivers] have led us to choose such an important, difficult and delicate theme for this conference,” said Archbishop Zygmunt Zimowski, president of the Pontifical Council for Health Care Workers. The conference is called “The Person With Autism Spectrum Disorders: Animating Hope.”
Benton said the church — like much of society — is only recently catching up on autism as diagnoses rise and people with autism and their families become more knowledgeable and able to advocate for themselves. In the church, she said, it has been common for autistic people and their families and their pastors not to know if they would be able to participate in basic Catholic rituals like being confirmed or receiving Communion, which Catholicism teaches unites a Catholic to Jesus.
“Sometimes families haven’t been themselves sure if a child can prepare for the sacraments. They remember the preparations they had as a child — maybe they were required to know a certain number of prayers — and they think they know their child can’t or that the child can’t fully understand something,” said Nancy Thompson, director of programs at the National Catholic Partnership. She also works with dioceses. “But oh, my gosh, they can. The question is how? As this issue becomes more and more apparent in parishes, the progress I see has to do with pastors realizing there is someone here with a significant disability and not sure how to approach the sacraments. It’s of being not sure, not knowing.”
Thompson has an adult son with autism who is a eucharistic minister.
New products and training are being created for autistic Catholics, a hugely diverse group with different needs. New curricula, for example, might use visual cards to explain a sacrament instead of words, and some parishes are teaching non-autistic youth how to explain the sacraments, as some autistic people connect more easily with peers than with adults, Benton said.
A new app is being developed — and translated into Spanish — to help students “on the more severe end of the spectrum” understand and prepare for sacraments, Thompson said. And the University of Dayton — a Catholic college — is creating a new certification for ministry to people with developmental disabilities, Thompson and Benton said.
The Wrights said they hope the church will see autism as an issue because it challenges and divides many families. They said they themselves have had a dispute with their daughter — the mother of their autistic grandson — over the role of vaccines.
“The way it affects families is it pulls them apart,” Bob Wright said. “The child requires so much help and attention, and we are worried about married couples losing love in their family. And the question of who has to work and not work, how to pay for this. Everyone has to pull together.”
A Vatican document describing the event says it also aims to uplift. A celebrated Taiwanese painter with autism will present his work, and videos will show Catholics with autism speaking about their connection with God.
“Bearing in mind the notable contribution offered by music for this specific pathology, it was believed advisable that this meeting with the Holy Father should also have the features of a ‘party,’ ” the document said, “thereby making easier the involvement and the participation of the people who will be present at the meeting, as a sign of the care, nearness and solidarity of the Church community.”
The Vatican said the effort specifically seeks “the protection of Our Lady of Sorrows” — the name for Mary, mother of Jesus, when she is suffering.