The co-founders of Autism Speaks have expressed how the Vatican’s “embracing” of people with autism is moving and is what this Pope is all about.
While attending the Vatican’s first-ever conference on autism, Bob Wright, the former head of NBC Universal, and his wife Suzanne Wright, both of whom are Catholics, spoke on autism and what their organization is doing to support families and encourage research.
In this interview with ZENIT, they also discuss how the Catholic Church’s efforts and the Holy Father’s words can do great things for understanding and accepting people with autism.
According to Autism Speaks’ website, autism spectrum disorder (ASD) and autism are terms describing a group of complex disorders of brain development. Such disorders are often characterized by difficulties in verbal and nonverbal communication, social interaction, and repetitive behaviors, among others.
Inspired by their grandson’s diagnosis, the Wrights founded Autism Speaks which is at the forefront of combating autism, a disorder affecting more than 3 million in the U.S. and tens of millions worldwide. U.S. government statistics show how the prevalence of this disorder has been escalating in recent years.
Through the advocacy efforts of Autism Speaks and others, 38 states have enacted insurance reform, requiring insurance coverage of medically necessary autism treatment. Autism Speaks funds biomedical research into the causes, prevention and a cure for autism.
Sharing that she has been trying to get the Church involved in this cause for years, Suzanne Wright expressed how she is happy to see what the Church is doing and how Pope Francis is reaching out to those on the margins of society, including people with autism.
The Wrights were participants in the Vatican’s three-day conference entitled, “The Person with Autism Spectrum Disorders: Animating Hope,” Nov 21-23 which gathered some 650 experts from nearly 60 countries and was sponsored by the Pontifical Council for Pastoral Health Care.
*****
ZENIT: Could you speak a little bit about autism itself, and what should be known?
Suzanne: Well, in the United States, autism affects 1 in 42 boys, 1 in 68 American children. And the numbers keep rising. When Bob and I learned our grandson, Christian, was diagnosed, it was 1 In 166. It’s almost a 400% increase in ten years. Now more people are aware of autism. One of the speakers today [at the Vatican conference on autism] alluded to the fact that autism’s always been here, only it’s better diagnosed now. I would say to that: It’s here, and it’s here in these numbers. The fact of the matter, what we always say, is: the numbers are rising.
Bob: There’s a pushback, especially because it’s mental health, and that means most MDs aren’t involved. So [it’s] psychiatrists, sociologists, neurologists, [and] psychologists and that’s a very small piece of the medical world. We’ve done studies on this and they show that at least 50 percent of autism cases are better diagnosed, but we can’t accurately account for the other 50 percent of the increase.
Suzanne: And I’ll tell you, when I was having children, I never knew anybody with autism. So you can’t convince me that this is not a growing problem, not only for the United States, but for the world. We got the world involved in this when I went to the United Nations …and we were able to get a World Day dedicated to autism. I should mention that every nation must say ‘yes’ in order to get a world day. So when we all went to the United Nations, the nations of the world believed what was happening, too. And so that is why the world is now involved, because this is a global problem.
ZENIT: Could you speak about Autism Speaks? What it’s done, doing, and has ahead? Current initiatives?
Suzanne: We started it because our grandson Christian was diagnosed with autism, and Bob was running NBC at the time. We thought we were pretty informed people. We had no idea what they were talking about when they said Christian had PDD-NOS: Pervasive Development Disorder-Not Otherwise Specified. It was just devastating. Then they finally said the “A” word: autism. We just said we have to do something. Because in our position, if we could take care of Christian, what all about all the people who are unheard voices. Nobody was really talking about this ten years ago. Christian is now a teenager. Christian got worse and worse. He was speaking … We thought he was great, and now he’s non-verbal. And when I go to see his school, see his classroom, it’s obvious the school is full, mainly of boys, who have severe to moderate autism … It doesn’t matter –It’s still autism. It’s just the degree and the spectrum.
ZENIT: So Christian prompted you?
Suzanne: Right, we started an initiative across the country. [We got involved] because so many of these parents had no insurance, which is horrendous. Over the years, Autism Speaks has committed $500 million to its mission, which we’ve raised over time.
Bob: The most significant thing we’ve done—we’ve been doing research all along: medical research, scientific research, and so on …
ZENIT: According to your website, Autism Speaks and Google are collaborating to transform genomic research on autism spectrum disorder (ASD). Qualified researchers anywhere in the world will be able to access and share data, which will dramatically accelerate autism research. From your point of view, why is this significant?
Bob: It’s the biggest single project that we’ve undertaken and probably will undertake. This has the opportunity to open up a whole area of scientific endeavor that is blocked today by data that scientists can’t get though.
Google’s efforts are going to take that wall down. There are going to be 10,000 whole-genome sequences and all kinds of data related to every single one of those samples. We will have half of the target done before the middle of next year, I believe. And that is an incredible amount of data. Way beyond what a research organization, university, or certainly a hospital could do.
Now, that will allow our friends here from Rome —like the doctor who spoke earlier at the conference this morning– to go online and register, and he’ll be given a virtual seat to go into this database that will be held by Google–nobody else can hold the data. It’s too much. And he’ll be able to go in and see things, such as genetics relating to autism, in a degree that has never been possible.
ZENIT: So Google is enabling any qualified professional to be able to have this access about the disorder and all this data and research, which before was never possible?
Bob: Yes … Because if you’ve already been in this field, such experts know very well what they know, what they want, what they can’t have. This allows them to have things they never had before. So I hope it’s hoping to break down the spectrum.
This is a spectrum disorder. Cancer used to be a spectrum disorder. And it’s taken about 70 years to break down cancers [into sub-types], and we’re going to begin that process of breaking autism down.
Bob and Suzanne: It’s 1.7 billion pieces of data.
Suzanne: That’s a huge amount of information, and that’s a game changer.
ZENIT: Let’s talk about your experience at the Vatican this week at this conference dedicated to autism. How has your experience been?
Suzanne: Well, we had been here when Cardinal Egan was made a Cardinal [Cardinal Edward Egan of New York]. This and then have been a very spiritual time. But this embracing our a
utism community globally from the Vatican is really amazing, and it really is what this Pope is all about … The families on the margin, the people on the margin, and the children with autism, who are really on the margins.
And the idea that he has embraced this is truly extraordinary because we’ve been at this for ten years and I’ve always said, and I am Catholic, and I’ve been to Cardinal Dolan’s office, and Cardinal Egan’s office, and I’ve been to all of them over the past 5 or 6 years, asking them to help me to get the Catholic Church involved because the Church is such an extraordinary leader in so many ways. And look what they did for AIDs around the world, just embracing the people who needed their help. And [Pope Francis is] really a leader, a spiritual leader, who people need to hear! To hear the Pope speak on autism is wonderful. His message would reverberate around the world. It’s extraordinary.
But I really think, too, that it needs to go to all faiths. This is the leader of our Church. That’s the one thing we all have in common and that’s our religion. … Autism doesn’t care if you’re Muslim, Protestant, or Catholic. So I think this is a chance for the world’s faiths to step in line with our Church and the Pope, and see what we can do as far as healing around the world.
Bob: Well, from a very practical standpoint, the Catholic Church manages an enormous number of healthcare organizations, hospitals, homes, retirement areas, clinics, all over the world. So to have them focusing on autism, especially given all the Catholic healthcare workers, is a huge number of people. That’s very positive.
Any words that the Pope puts forth on this subject will really get some resonance, not only in the healthcare community, but in the public, especially in places like Latin America which is heavily Catholic. The stigma can be reduced in 20 seconds, 40 seconds. [Pope Francis] can reduce that stigma, just by saying: ‘You need to help these families. No blame here. You have to help and pull together. I pray for all of you.’
Also since there’s thousands and thousands of people that are doctors, nurses or management in healthcare, that are in the Catholic system, this channels back to them, too, and is very beneficial.
ZENIT: Would you say you are getting something out of this conference itself?
Bob: It’s the fact that they’re signaling to these healthcare organizations—there’s probably several million people—that this is important and you better stay abreast. You better pay attention … There’ll be write-ups from Archbishop [Zygmunt] Zimowski, President of Pontifical Council for Healthcare Workers, that will go out to all these thousands and thousands of locations, so that will be the prize. More so than the presentations, it’s more about how they summarize it and send it out to all of these healthcare workers…. This will help a lot.
ZENIT: How can the Catholic Church help with combating autism? Can it help?
Bob: Because the Catholic Church is everywhere. It will help. No question. And the workers will get the message, too, that they’re being supported.
Suzanne: People are starting to realize this is truly a problem that, thank God, the Vatican is truly addressing. Now we have a door opened here. I am sure they’ve whispered the word in many countries—autism. This is going to really provide a platform to have open discussion and dialogue about autism.
***
On ZENIT’s Web page:
Pope’s Address to Autism Conference: http://www.zenit.org/en/articles/pope-francis-says-people-with-autism-carry-a-cross-stigma-must-be-broken-down
On the NET:
Autism Speaks: www.autismspeaks.org
On Partnership with Google: Partnership with Google
