This blog post was written by Michele Arbogast, an Autism Speaks staff member who attended The Vatican’s first ever conference on autism, “The Person with Autism Spectrum Disorders: Animating Hope." Autism Speaks co-founders Bob and Suzanne Wright spoke at the conference focusing on volunteerism. Below, Arbogast shares her thoughts on attending the once-in-a-lifetime event.
I have a confession. I have had the hardest time sitting down to write this – not because I am a procrastinator – not at all. Actually the opposite most days. I simply think that even as a writer sometimes the English language doesn’t adequately express what’s in our mind, our hearts and our souls. This is one of those times. So — I’ll do my best.
It wasn’t difficult to decide to go to the Vatican. Available vacation time. Check. Love of Italy. Check. Catholic. Check. Check. Available funds. Well — sort of check. One thing autism has taught me is to live in the moment and so, we dove in. Plane tickets, hotel, teacher notes, iphones, ipads, and lots of chargers. We were off.
I could talk about the entire trip to Rome, but this would go on forever, so let me stick to the first ever — and of course, the Holy Father, Pope Francis.
Neither my husband nor I wear our faith on our sleeve, but suffice to say it was my faith I drew upon in those first few dark hours after my son’s diagnosis. And, it has carried me through some scary times in the years since his diagnosis. (If you are an autism parent, you know these times well.)
Like so many people, I was drawn to the Holy Father when he appeared on the balcony of St. Peter’s Basilica after his election. The humble, simple wave and warmth in his smile and eyes really touched my heart. A chance to see him and be with other autism families? A once in a lifetime opportunity. No, this was not a difficult decision.
It turned out to be a spiritual journey that has deepened my faith and opened my heart in ways I could never have imagined was possible. It began way before we actually saw the Holy Father. And, it is still going on. I’ll admit it. (Here’s my second confession.) I was clueless at first.
We arrived before the conference to tour a bit with my son’s godmother — the ruins, churches, basilicas and art. And each time we entered a church or basilica, my little guy would grow quiet and calm. Now, since you don’t know him, you don’t know he repeats what limited language he has over and over again. And — he’s got more energy than a quasar. He loves to walk around busy, noisy cities. So, imagine him calmly accompanying me. Listening to what I pointed out and explained. Kneeling. Folding his hands in prayer. It was as if peace enveloped him like a blanket every time he stepped inside the doors.
Granted, we go to church every Sunday and sit in a special row for the disabled with our autism service dog. He knows (but can’t say) the prayers. The Mass. Somehow, this was different. The serenity was gently taking over. And, it was profound.
We arrived in Rome with few expectations. We didn’t come for a miracle. (Ok, so I don’t know many autism parents who would refuse a miracle, but that’s not why we were there.) I had prayed for that very thing my son was embodying… peace. And, it was right in front of me.
The conference itself was amazing. It was comprehensive in scope and sheer volume of information shared by quite a number of scholars, doctors and clergy. It was well attended with more than 57 nations represented. But, there too, what struck me was the power of good will in the room. Perhaps it was because the priests, bishops, archbishops and Catholic sisters in the audience start from a different place. Service is their life. But I was almost overwhelmed by the thought of the miles they had travelled for boys and girls like my son. I believe they are right now helping families in their corners of the world. They are raising awareness and acceptance where there has been none. And, maybe even spreading a little peace.
The day the Holy Father, Pope Francis, was holding the general audience for autism families was – um, well, chaotic. Have you ever been in St. Peter’s Square? In the center, people were queueing for the regular general audience… and the autism families were off to the side – waiting at a different entrance. Remember – waiting and autism aren’t necessarily two things that go together. The energy in the air was intense. And the mad dash to good seats was even faster than to the bargains on Black Friday.
Then we waited. Some beautiful popular musicians played Italian music and sang. The anticipation built up by the second. Forget Sting and Elton John (or whatever your favorite singer is), the welcome of the Holy Father from those autism families was grander than anything I had ever witnessed. Some of them – so desperate. For healing. For acceptance. For peace.
There was no fanfare when he entered the room. No bugles or marches. But everyone knew he was there. Gently touching hands and faces. Focusing on the children. I will admit. I started crying the moment I saw him. Big golf ball tears. There was no way to stop them. No stiff upper lip possible. Sister Nicoletta, an Italian nun who I had been sitting next to, gave me a hug and gently pushed me closer to the barricade to see.
No, my son did not get touched by the Holy Father. He did get to see him though as he was right in front of us. I beat myself up for a while after we left. Why didn’t I lift him up? Dress him in fluorescent orange? Then slowly I began to realize that he had been touched deep inside where it matters most. We all had.
We had seen God in Pope Francis that day. Right in front of us. And within our own community. We had seen what it was to be truly compassionate. Truly accepting. To truly love another. To see past differences. To see the beauty in every boy and girl, teenager and adult with autism.
We had been given a gift – a lesson in love – and peace. Beyond words. And, it is now our job to not only learn the lesson but use the gift. Sure – we are all autism parents. We are all somewhere on the spectrum of exhaustion. Our lives are chaotic and crazy. But, it’s up to us to change the world for my little guy and your little (or big) one too.
Pope Francis got it. He still gets it. And my wish list after my Vatican trip is even bigger than when I left. Suprisingly, none of the items are about my son. That peace is still with him but instead of like a blanket, I feel like it’s a warm fire deep inside his belly. Some day he might have the words to explain, but I am not sure I need them. I feel blessed having witnessed this transformation.
And so, I wish the words (and actions) of Pope Francis (who did speak to us and ask for acceptance for our loved ones), would be taken to heart by all leaders of all major religions. I have friends of every faith. There is not one family who would not benefit from awareness, acceptance, compassion, service and selfless love.
I wish for all of the leaders of all the major religions would urge their faithful to get involved. Befriend an autism family. Offer to help. Make a dinner. Babysit. Find their loved one a job. Use your talents to teach someone with autism. Open an autism-employee run business. Design housing. Run an errand. Or simply offer your seat at a religious service. Probably the best hour of my week is at Mass in a designated row for people with need. These things are priceless.
Speaking of Mass, I wish for a Mass for all disabled people when Pope Francis visits Philadelphia this fall.
I wish for unity in the autism community. Let us all push aside our differences – theoretical, social, cultural or religious. Pope Francis did.
Let us all work for profound peace.
It’s a new time. A New Year.
Happy New Year to all the autism families around the world… just like mine.