It has begun: thesis writing!
Today starts my summer of grit-filled, self-disciplined, academic, creative writing of my master’s thesis…as soon as I finish this post.
Since I’m writing my thesis on it, I’m obviously very interested in my thesis topic, so I love when people ask what I’m writing about and working on. Here’s how the conversation usually goes:
Them: Oh! You’re writing your thesis this summer, that’s great. What are you writing about?
Me: Ecclesial integration of the autism community – you know, inclusion of autistic people and their loved ones in our parishes.
Them: That’s a great topic, so needed. I heard about a parish that has a Sacramental Prep program for special needs kids, you should check it out. (OR) My friend goes to a church that has a special needs (faith formation) program for kids.
It makes me happy that people are trying to connect to this idea of ecclesial integration and happy that there are a number of people who are aware of a church community here or there that offer something that might include some of the autism community. What I notice most is that the conversation focuses on a) children and b) faith formation (usually specifically just Sacramental Prep).
As I mentioned in last week’s blog, autism inclusion is more than just a program or ministry, particularly a program or ministry as narrow as just Sacramental Prep (hello life-long faith formation; I didn’t forget about you). Two weeks ago, we talked on the blog about how autism is a life-long neurological difference, meaning that we have autistic people of ALL ages in our parishes (or at least, we could have autistic people of all ages if we create space and welcome them). Those two reasons alone are enough to beg the question: should Sacramental Prep of children be our primary focus when starting to make space for the autism community at our parishes?
Short answer: No. It should be a close second. Starting with Sunday mass should be first.
Long answer: Let’s start with an example that’s easier for everyone to imagine. You are a parent of an autistic child. They are of the age of reason and you want them to prepare for and receive First Holy Communion. You’re fortunate to attend the one parish in your area (maybe even your diocese) that has a special needs Sacramental Prep ministry. Your kiddo goes through the prep process and one or two years later, receives their First Holy Communion. The problem is that your kiddo has a lot of behavioral problems at mass. You realize this is because the music overwhelms their system, they struggle handling even the smallest change in the ritual and rhythm of the mass (it’s all over when there’s that extra announcement that takes 5-10 minutes for the annual diocesan appeal, for example), and the sheer number of people that attend your awesome parish puts your kiddo into a rigid state of anxiety to start. So, your kiddo can now receive the Eucharist at mass, but mass itself is painful for her/him and a struggle for you because you’re exasperated managing your child’s behaviors and helping her/him just get through the mass. You’re struggling because mass is so important to your family, but you hate the idea of your kiddo suffering because of the mass, or you might even stop going to mass all together after your kiddo receives her/his First Holy Communion.
Let’s take another example. You’re an autistic young adult experiencing the growing pains of becoming an adult, trying to find community that accepts/appreciates you and can help you deepen your relationship with God. You’re interested in seeing if the local parish might be a good place for you to find support and fellowship – after all, they have a booming young adult community from what you’ve heard. You show up to mass on Sunday, but you’re agitated and on the verge of a meltdown within the first part of the liturgy because of the hum of noises, the crinkling of the pages turning in the hymnal, the booming of the homilist’s voice, the over-stimulation you feel from all of the colorful, religious artwork, etc.
By now, you’re probably realizing where I’m headed. Sensory Processing difficulties impact roughly 95% of autistic individuals, so the chances are very high that the majority of autistic people will have some kind of struggle or even a painful experience when attending regular Sunday mass.
It would be easier for the world to survive without the sun than to do without Holy Mass. ~ St. Pio of Pietrelcina
If autistic individuals can’t access the mass, understanding and being ready to receive the Sacraments of initiation don’t matter so much. Fellowship is important, but there’s a significant absence in one’s spiritual life as a Catholic without the mass and the Eucharist. Now, we don’t want to go to the opposite extreme of having an autism accessible mass and autistic individuals who can’t receive the Eucharist because they haven’t been formed and welcomed into the Sacraments of Initiation or who have no sense of community and fellowship, which is why I call faith formation a close second when it comes to integration priorities. Ideally, we’d be providing integration and inclusion in all facets of parish life at the same time, but having worked at several different parishes in faith formation and youth ministry, I understand that’s not usually how progress happens.
Creating a sensory-friendly Sunday mass allows our autism community to participate more fully in the most important prayer of our church and begins to open up access to the Source and Summit of our faith, the Eucharist. Even if an individual isn’t receiving Jesus into their body through consuming the Eucharist, they can still receive grace through participation in the mass and still enjoy Christ’s presence in the liturgy. So, I think there’s a good case for beginning our autism inclusion efforts with our Sunday mass.
Here are some basic ideas for creating sensory friendly mass:
- Acoustic music, perhaps even just a cappella (no instruments)
- Some autistic individuals love music, but regular Sunday worship music can be too much for them
- Some autistic individuals are overwhelmed by any kind of music
- You’ll have to work with the autism community to decide what option will work best for them (see the hybrid option below)
- Allow individuals to stim, walk around, use headphones, other coping tools
- Hold the mass in a space with good acoustics and utilize sound dampeners if needed
- The space should also be relatively simple in it’s décor so as not to be too visually overwhelming
- Welcome and acknowledge that individuals might make noises or talk and might move around or stim during the mass
- Have visual supports for Mass
- Here are two examples parishes can provide for families, or families can download:
- Social Story: http://kinneyautism.sju.edu/s/1378/kinney/interior-hybrid.aspx?sid=1378&gid=56&pgid=3249&crid=0&calpgid=61&calcid=4859
- Visual Schedule: https://writinglikeamother.com/2017/05/07/visual-schedule-for-roman-catholic-mass/
- Email families and autistic individuals in advance to let them know or remind them of any changes in the coming Sunday mass, like a second collection, change in liturgical colors, special Sacramental celebration (like a Baptism or First Communion), special announcements, etc.
- In fact, perhaps drop the announcements and communicate via the bulletin, a special handout, and/or electronically (e.g. website, email, text)
- Have a “break room” without sound, so individuals who are especially overwhelmed by the talking and/or acoustic/a cappella music can still see and participate in the mass in an especially quiet or silent space (see above about discerning how best to handle sound sensitivity with your particular community)
What ideas do YOU have for a sensory-friendly mass? Let us know in the comments below about your what your parish does to make the Sunday mass accessible.
Oh, my goodness!! I forgot to come back to this article.
Thank you so much for these ideas! My son is neurotypical, but he has expressed “not want[ing] loud music at Church.” I can only *imagine* how an individual with a spectrum disorder might feel!
And, thank you for also reminding us that we need to consider that some people who may “look out of place” on their iPhones, or with earphones over their ears, may actually just be coping with all the extra stimulation that Mass naturally provides. It’s a gentle reminder to avoid judging.
Thank you for these ideas! (I have nothing to contribute, because you’ve already tackled what I would propose… Mass booklets with visual support, or a place for them to step away when things get too difficult.
At the risk of people feeling excluded… another idea is to create one particular Mass devoted to meeting autism spectrum needs… each weekend, have one Mass (much like the designated, universal – it seems – “Children’s Mass”) where people know they will be embraced if there are visual or audible stemming issues. But, they should be embraced regardless of which Mass they attend… So, not entirely sure this is a “good” idea…
So glad this post could resonate and I think it’s fantastic that you found commonality in your neurotypical son’s experience as well. Part of the inclusion movement is to truly integrate the community as one, but one thing highlighted by many people in the inclusion field – whether we’re talking inclusive education or the US Catholic Bishops’ work on intercultural parishes – is to simultaneously respect diversity. In other words, all being part of the Body of Christ without losing the uniqueness of the individual part (not all can be the eyes, or not all can be the feet, etc.). So in that sense, many of these ideas can be implemented at all Sunday masses, but it’s not likely practical to implement ALL of these ideas at ALL of the Sunday masses and having a separate “sensory-friendly” mass could be appropriate. For example, many people’s worship and encounter with God are enhanced by music – it would be a disservice to the community if there was no music or only soft a cappella at all of the masses. Perhaps we could do that at a couple of masses, though. Plus, as we work towards inclusion, ideally there would be parishioners not part of the autism community who might be willing to participate in a sensory-friendly mass that takes all of the above suggestions into account. Thanks for joining in the conversation Anni and sharing some great thoughts!
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It’s not the Mass that is the only problem, it is the people. Our prayers for the sick are soooo long that it would be quicker to pray for those that are well. People move away from us when our autistic child stims or ask us to move if she grinds her teeth (like we enjoy that sound also). They pull their children away from us to “protect” their child from ours on the way to communion, and get up and moves when she “sings”. Our child deals pretty well with sensory things as long as she has gotten used to it…and we sit in the front to keep her focused to the front when all the commotion happens behind us. We are well known in our parish church b/c we have raised 9 adopted kids there. But nothing has changed.
You’re absolutely right, MaryJo – we have A TON of work to do and the Mass is only the starting point on a much larger and longer journey to inclusion. I imagine that as we make these changes within our masses and/or develop a separate sensory-friendly mass, it would entail educating the parish community about autism and sensory processing challenges. However, to your point, we can implement a sensory-friendly mass without the leadership of the parish having any deeper understanding of the autism community and therefore the rest of the parishioners will never have a chance at a deeper understanding of the autism community (nor autistic people and their loved ones) and then, we’ve absolutely solved nothing; it’s a bandaid that will fall off eventually because we’ve made no real progress at inclusion. Thank you for sharing your experience and I’m sorry it’s been such an unwelcoming and unloving experience for your family. You are totally on the spot that people are the biggest factor in all of this. I am deeply grateful that you not only took the time to read this post, but to highlight the critical piece in all of this: changing the hearts and minds within the community so that their attitudes and knowledge embrace inclusivity (and let’s call it what it is – that they better embrace what living as a disciple of Jesus entails). I’m over here shaking my head, my heart sad and appalled, as I read your experience of mass, so please know that it’s very heartfelt when I say that I will be praying for your community; and it is my sincerest hope and prayer that this work and message of parish inclusion for the autism community will bear fruit in all parishes, but especially parishes like yours, as soon as I possibly can help it, with God’s grace and guidance. -Lindsey
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For me it’s not the sound, it is the lights. I’ve emailed the parish, but they said that they can’t fix it. Someone who works there took the time to be in different parts of the sanctuary to see how bright it was, and had a suggestion about where to sit, where it wasn’t too bad. The problem was that it was still too bright to me, she can’t understand because it isn’t too bright to her. Sitting anywhere in that sanctuary causes a mild headache and surging anxiety. I’m struggling since I have friends there, but I think I’m going to have to start going to a parish much farther away. It is frustrating that a matter as simple as light bulbs has me questioning what God wants from me, where I belong, where the Church is headed, but I know that I have to be patient as autism acceptance is still at its infancy.
I’m sorry the parish has told you they can’t do anything about the lights, especially with the headaches and anxiety it causes. Ideally, the parish would change their lights since you’re probably not the only person negatively effected by them, but in the mean time, have you tried glasses with tinted lenses to see if that helps? I’ve heard that yellow or sometimes blue tinting, depending on the lights, can sometimes help. Let me know if there’s anything we can do to help with the parish or the situation. God loves you and wants you as part of the Church – we’re praying and working on helping the rest of the Body of Christ better understand.