This week, we continue our look at How to Welcome, Include and Catechize Children with Autism and Other Special Needs by Deacon Lawrence R. Sutton, PhD.
From A Catholic Parent of Autistic Children
The first thing which really stands out for me is that this does not read like the other books I have read by autism experts describing autistic kids. Here we have a licensed psychologist and former manager of his state’s Bureau of Autism Services writing about autistic children in a way that states all the same facts as every other book, but does so with the intent of explaining how autistic kids develop relationships – with themselves, with peers, with teachers, and with the world around them. The “understanding autism” section lists all the usual headings – social skills, communication skills, rigid and restricted behavior, stimming – but describes how autistic behaviors are kids’ ways of making sense of the expectations of other people. It reads like a two-way translation guide, rather than a list of “deficits we can expect.” As a parent of autistic kids, it feels great to have an “expert” acknowledge that our kids’ behaviors are their unique and complex ways of compensating for the things they can’t understand!
I also appreciate the honesty in this book when it comes to how it feels to have kids whose behaviors don’t make sense to others. Parents are often told on the one hand that this is how our kids cope with the world, and then, many times, we are told on the other hand that, in settings like church, they have to curb these behaviors for the sake of not bothering others. This book candidly acknowledges that some parishes are not yet comfortable with autistic behavior, and it just as candidly challenges such communities to examine these attitudes from the perspective of autistic children and their parents. If all parishes truly welcomed autistic kids the way the author’s parish does, we would see drastic increases in church attendance and participation, and I know it would bless the entire community.
What I enjoyed best is reading about the program itself, which is described in the second half of the book. A lot of this section applies more to parish staff than me as a parent reading it, but the idea is that parishes can offer individual instruction to autistic kids by having teens (who have been trained and prepared for teaching the faith) act as mentors. I know my children would take to this model immediately if it were offered at our parish. It is positive peer role modeling at its best, and could see my kids coming week after week if they knew their mentors were waiting to greet them and cheer them on. What a beautiful way to make faith come alive! What’s more, the parents bringing kids to instruction also form their own supportive group where we would have the forum to share our own fears and triumphs and realize we’re not alone. So many times I have brought my kids to things and felt like a misfit myself because nobody else realizes what a huge deal it is to get my children there in the first place, never mind the dread I have of the phone call saying they need to get picked up early. It’s very isolating. So, this program also has a support in place for parents like me who really need it.
Overall, this book is an inspiration to read. The only critical point I have is that some people will be put off by Lawrence Sutton’s use of person-first language. The book repeatedly talks about “children with autism.” It is not an issue for me, but I know a lot of people prefer saying “autistic children.” With everything else written in such a positive tone, I don’t think this was meant in an ableist manner, and I don’t think it should be taken that way. I certainly did not feel put off! Thank you, Deacon Sutton, for answering the call of God in your parish in such a beautiful and far-reaching response!
For the next few weeks, we will be taking a closer look at the book How to Welcome, Include, and Catechize Children with Autism and Other Special Needs by Lawrence R. Sutton, Ph.D. This book, published in 2013, highlights the success of a parish-based sacramental preparation and religious education program designed to give autistic children an opportunity to engage in learning about their Catholic faith which recognizes and celebrates the traits which distinguish them from non-autistic fellow Catholics. Dr. Sutton is an autism specialist who is also an ordained deacon in the Catholic Church.
The book is a fast read and is organized, as its title suggests, as a practical guide for other parishes to consider implementing programs in a similar fashion. The conclusion points to an actual curriculum which arose from Dr. Sutton’s pilot project and may be purchased through the book’s publishing company, Loyola Press; however, the book stands on its own points quite well and does not come across as a promotional tool.
We thought it would be helpful to review the ideas in this book from the different perspectives of those who are most likely to pursue this topic in the first place. This week, we hear from an autistic Catholic adult.
"Lawrence Sutton directs much of his writing toward championing the children likely to struggle in a classroom setting because their processing styles are not compatible with that mode of teaching and learning. He does so in a wonderfully descriptive and supportive way by discussing behaviors which might be pegged as disruptive, but instead explains how these behaviors function as means of coping with the sensory and emotional overload of being autistic in a large group setting. He never once characterizes these behaviors as problematic. Rather, he emphasizes that autistic children quickly reach their limits in large settings and rely on stimming to modulate their anxiety and increases focus. In many settings, through no fault of anyone involved, stimming creates distraction and discomfort for those in charge and those in attendance. He places no blame on either side, which gives the book a very positive and encouraging feel without compromising anyone’s needs, be those the needs of the child or the needs of the teachers to comfortably maintain focus.
Reading this book brought several thoughts to mind from my own experiences growing up. I dreaded youth groups and religion classes because the setting overwhelmed me and I made minimal connection with the material being presented. I was more the type to hide in the background; my anxiety did not create any disruptions or distractions because I coped by trying to be invisible. As a result, the sense of being part of the parish community was never real to me. I felt like a visitor in my own church, week after week. Dr. Sutton’s approach addresses this need equally well. From the very first chapter, he emphasizes that religious education and sacramental instruction, at their very foundations, are based on relationships: between parish staff and parishioners, between parishioners, between teachers and students, between mentors and mentees, and, ultimately, between each individual and God, who is revealed ever more fully in each sacramental encounter. Group instruction, in his estimation, should come together only by leaders and attendees knowing each other as individuals in the same community. Therein lies the greatest value of this book, in that it does not attempt to fit autistic children into yet another group – it spells out how to know each autistic person one at a time, and thus celebrate their presence by meeting them wherever they are in their ability to participate.
I am far past the age of sacramental preparation and religious instruction, so I read this more as a spectator than one who would benefit directly. That said, Dr. Sutton’s philosophy inspires me to the point where I would gladly help implement programming like this in my own parish… which speaks volumes, since I am just as reluctant now as I ever was to be visible among large groups. The program described in this book would be wonderful to see in action, and I would gladly volunteer my 'autistic expertise' in teaching others how to understand people like me. In that sense, then, Dr. Sutton’s approach benefits all, including autistic adults like me, who are still seeking new ways to experience God in the life of the parish."
Last week, we made the distinction between praying for healing and praying for cure. There are many occasions when cure is appropriate and desirable to pray for – namely, when looking at an otherwise healthy system that is being eroded by disease, illness and imbalance. Healing, on the other hand, is appropriate and desirable for anyone at any stage of wellness or illness. Healing is a restoration, a refurbishment, a renewal of something that is already whole but has experienced physical, mental, emotional and spiritual wear and tear.
When it comes to disabilities, many people think to pray for cure. We must acknowledge a certain logic to this, if the person praying for cure is the disabled person. There are plenty of disabling conditions which create hardship and impairment to the point of chronic pain, unhappiness and loss of livelihood. It is reasonable to think that some disabled people do desire radical change beyond a restoration to their baseline – they want renovation. It is just as reasonable for a person to ask for this kind of miracle in their prayer. We see this happening in Scripture, and we see Jesus affecting cures of many chronic and disabling conditions.
But what about autism? Should there ever be prayers to cure autism?
The simplest answer: Only if I am autistic, and I would like my autism to be permanently transformed into neurotypical wiring.
In all other cases [i.e., I am not autistic, or I would not want to be neurotypical], the answer is “no, thank you.”
HEALING, on the other hand, is nearly always reasonable to pray for, either on our own behalf or for another, autistic and non-autistic alike.
For the most part, these guidelines jibe with most people. However, there are some who will make the case that there are severely disabled people who cannot effectively communicate their desire to be prayed for. Consider, for instance, the nonverbal autistics who are unable to express their thoughts and emotions in ways most others understand. Do those people long for a cure? Is it appropriate to pray for their deliverance from that which impairs them to such an extent that they cannot even pray on their own behalf?
There is a safe response, in that we who petition Almighty God for healing and cures know that He knows best. Sometimes, when our cure will bring us closer to God, it will be granted. Other times, our disability serves a greater purpose than we can see, and cure is not given us. And so, if we errantly pray for someone’s cure, the outcome is not ours to decide.
The bigger issue is whether we should presume that person wants what we feel is best for them. Once again, we offer the simplest response: if we base our prayer on what WE FEEL is best for others, we risk offending their right to seek God’s will for themselves. If our prayer is based on what TRULY IS best for them, we cannot err.
We conclude with some concrete suggestions on the points mentioned above.
Helpful ways to pray for others:
It is better to rethink our intentions if our prayers:
Continuing our thought from last week, the need for prayer is one that all humanity shares – yet can become a source of discomfort, isolation and marginalization if those praying for us fail to see what our actual needs are.
“Prayer for Healing” is ubiquitous among cultures and gatherings, usually at the top of our petitions. And, why not? As many things as we are able to control, our physical and mental health remains a wild card. Unexpected accidents, illnesses and circumstances take us by surprise all the time and seem the least fair of any of our challenges. How many times do we lament that we have done everything right, and still, [fill in the diagnosis] appears on the scene and wreaks havoc with our health and our plans?
Many people see autism this way, particularly in the lives of the very young. Parents, grandparents, older family members and caring adults see signs of distress in an otherwise healthy child and, rightly, take steps toward early screening and intervention. It is most often this distress which raises our own distress as caring adults. Who among us does not feel stirred to act when a child is struggling?
As a matter of course, the signs of autism do not make it to a diagnostician unless they are causing distress. We never hear of parents bringing their child to a clinic for evaluation of their high reading level, astonishing aptitude for retaining and applying information or their indescribably deep emotional reactions to the situations they observe going on between others. It is always a case of malfunction: not being able to speak, not being able to calm their agitation, not able to follow public expectations.
Caring adults have a very full bag of emotions. Empathy for the struggling child is often very high, but there is also the frustration of not being able to help the child and the feeling of responsibility for the behavior that does not conform. There is internal pressure to maintain control, external pressure via the critical looks and comments from others, and then, there is the sheer humanity of being overwhelmed and overloaded ourselves when the children in our care are unable to regulate themselves.
These dynamics feed into prayer gatherings, which ought well to be havens of support, encouragement and hope. By praying for one another and our collective needs, we come together as a community and experience the promise of better days ahead, assuring one another that “this too shall pass” and that God “heals the brokenhearted and binds our wounds” (Psalm 147).
So sets the stage for the person who stands and prays for someone to be healed, or cured, of their autism.
As Missionaries of St. Thorlak, we commit ourselves to assuming the best in everyone, to searching for their best intent even in the things which perplex and infuriate us.
Not every person praying for someone’s autism is insensitive or coming from superiority. The majority, we are guessing, come from a place of empathy with the suffering that comes from autism, and a feeling of helplessness to remove that suffering, particularly from those who are younger. Philosophically, there is that fine line between the suffering that impedes a person and the suffering that fosters growth and perseverance, and most times, people who pray for cure are asking that the debilitating suffering be gone.
(So, then, why don’t they just SAY that, instead of making autistics feel like freaks, or burdens?)
Maybe we can help by gently, positively outlining a few talking (or reading) points.
First, autism does have some very distressing elements, but it is not a disease. It is a neuropsychological variation of heightened sensitivity across all our processing channels. By comparison, a disease is something that erodes a working system. Autism does not erode our system. It IS our system.
“Cure” implies disease. It also implies a permanent change. Someone with a malignant tumor is right to pray for a cure, because permanent change is very desirable when it comes to disease. Please, God, stop this attack on an otherwise working system, and stop it permanently!
Healing, on the other hand, does not imply cure or permanent change, even though many of us use “healing” and “cure” interchangeably. It is equally important for autistics to know the difference as it is for those who pray for us.
Healing is a constant and ongoing process in everyone, no matter how we are wired, no matter what our circumstances may be. Healing, in a very real sense, is our routine maintenance. For as long as we live in this world and encounter other people, there will be wear and tear on our bodies, minds and emotional health. Healing is the process of attending to the rips, dings, bruises and wounds we acquire along the way. Prayer is a wonderful means of healing and routine maintenance which benefits everyone, both those who pray and those who receive the graces from those prayers.
Whenever anyone offers to pray that our autism may be healed, is it possible they mean to help us with the routine wear and tear that arises from being autistic? If we were automobiles, autism would be much more reckless of a driver than neurotypicality. Figuratively, our brakes, tires, valves, cylinder heads and shock absorbers bear the brunt of the intensity of the autistic lifestyle, meaning our self-care and maintenance needs are higher and more frequent. Think of healing prayer for autism as complimentary maintenance being offered to us, rather than someone telling us that our car is a clunker by praying for a trade-in or an upgrade.
Next week: Talking points on praying for healing vs. praying for cure, when it comes to autism and disability
May the power of Divine Love shine in and through my weakness, so that He might be glorified in and through me, and that in my weakness, His power may reach perfection. Through Christ Our Lord, AMEN.
Fr. Mark P. Nolette - Spiritual Director for the Mission of Saint Thorlak