In her book The Religious Potential of the Child: 6 to 12 Years Old, Sophia Cavaletti addresses children’s encounters with the mysteries of life through parables. She says:
The depth and strength of the child’s responses convince us that these parables offer a form of nourishment that corresponds to a child’s particular need. It is our conviction that the younger the child, the deeper and more serious these needs are. Therefore, we hold to the rule that the greatest and most important things are for the youngest children.
I would suggest adding the following to what Cavaletti said: This is especially true for the most developmentally vulnerable. The catechetical needs of children who are most at risk developmentally need to be considered and better addressed by parishes, schools, dioceses, and the national conference of bishops. Not only must a catechetical framework be designed in order to meet their needs, but a program of formation for seminarians, clergy, religious, and laity alike ought to be developed in order to help ministers understand the particular needs of this growing population. In order to address the catechetical needs of children diagnosed with ASD we must first try to understand what makes such persons unique—different from the neurotypical child.
The Centers for Disease Control (CDC) reported in 2018 that approximately 1 in every 59 children in the United States is identified as having Autism Spectrum Disorder (ASD). In the year 2000 the estimated number of diagnoses of ASD was 1 in every 150 children. That is a significant rise in just under two decades. ASD is four times more likely to be diagnosed in boys than in girls, and it reaches across every race, creed, and socioeconomic background:
ASD commonly co-occurs with other developmental, psychiatric, neurologic, chromosomal, and genetic diagnoses. The co-occurrence of one or more non-ASD developmental diagnoses is 83%. The co-occurrence of one or more psychiatric diagnoses is 10%.
You might wonder what the clinical definition of “autism” might be:
Autism spectrum disorder (ASD) is a developmental disability that can cause significant social, communication and behavioral challenges. There is often nothing about how people with ASD look that sets them apart from other people, but people with ASD may communicate, interact, behave, and learn in ways that are different from most other people. The learning, thinking, and problem-solving abilities of people with ASD can range from gifted to severely challenged. Some people with ASD need a lot of help in their daily lives; others need less. A diagnosis of ASD now includes several conditions that used to be diagnosed separately: autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), and Asperger syndrome. These conditions are now all called autism spectrum disorder.
In order to more accurately understand and represent the needs of Catholic families with children diagnosed with ASD, I conducted an “unofficial” survey of 30 such families through social media and personal contacts. 29 of the 30 families identified themselves as practicing or devout Catholics. 24 families had only one child with ASD; 4 families had 2 children with ASD; and 1 family had 3 children with ASD. 80% of the children were reported as male. 23% of the families surveyed say that their child with ASD is an only child; 47% also have 1 or 2 neurotypical children; 30% also have 3 or more neurotypical children. 10% of the group have been parenting a child with ASD for 4 to 6 years; 20% have been doing so for 7 to 9 years; 63% have been parenting an ASD child for 10 to 20 years; and 7% have been on their ASD journey for over 21 years. The families surveyed represent 19 dioceses across the United States and one diocese in the United Kingdom.
Children on the autism spectrum are as varied and unique as any other group of children. As noted by the CDC, ASD often manifests itself along with a myriad of other developmental concerns. Many children with ASD experience speech and communication delays. Seizures and other physical disabilities may also accompany an ASD diagnosis. Sensory Processing Disorder (SPD) is a condition which often manifests itself in varying degrees of intensity alongside ASD. Auditory Processing Disorder (APD) may impact their ability to differentiate sounds and comprehend the nuances of language. Time Blindness may impact a child’s ability to comprehend minutes, hours, days, weeks, months, etc.; inhibiting his or her perception of their place in the world, and within salvation history. Mind Blindness is a term used to describe the kind of concrete, black and white, exacting perception of persons with ASD. It is that quality which makes it difficult for the person on the spectrum to understand subtleties and morally grey areas. As a child with ASD reaches his or her teens this can be an especially challenging area of development. Attention Deficit Disorder (ADD) and Attention Deficit Hyperactivity Disorder (ADHD) has been a controversial topic in relation to Autism. Developments in this field of study in recent years recognize the possibility of these diagnoses (ADD or ADHD) functioning side by side with ASD.
For many years the public’s impression of autism was characterized by a child’s inability to make eye-contact, repeated rocking back and forth, constant stimming, and awkward social behavior and patterns of speech. Movies like Rain Man painted a picture of autistic persons as being intellectual savants, but otherwise incapable of significant self-care. This pervasive and outdated perception can make getting help from pediatricians, and understanding from family, friends, and community a challenge for parents faced with the enigmatic nature of rearing a child with ASD.
“There is often nothing about how people with ASD look that sets them apart from other people.” Perhaps the most common complaint from parents with children with ASD is that it is an invisible disability, one that seems to invite scrutiny and judgement from bystanders in stores, social settings, and even the Church. One parent from the survey said, “Children with ASD often look just like typical kid(s). Do not assume that behaviors are just a child being bad or undisciplined.” Another said, “They are not being bad; they need patience and kindness, not sharp words and looks.” Perhaps the most heartbreaking of all was this response: “They want to belong and participate but are treated so badly by people who don't understand (especially other children) that it is often impossible.”
Parent after parent shared similar insights concerning their children’s interaction with their faith community. Because so many ASD children do not exhibit signs on their bodies to indicate their diagnosis they are treated as though their children are being “bad.” The impression is that children with visually apparent disabilities are treated with more patience and compassion by the contemporary community.
The General Directory for Catechesis (GDC) tells us in §78 that the Church imitates Our Lady by treasuring and pondering the mysteries of faith in her heart. The first step in forming a response to the challenge of creating a more hospitable environment throughout the Church for children (and their families) with ASD is contemplation. There is no better model for the Church to follow than that of the tender, contemplative heart of Our Mother.
Throughout the GDC we are reminded that it is the primary call of the Church to proclaim the Gospel in all places, at all times, to all peoples. If we are, as the GDC says, to impregnate and transform the temporal order, then we must seriously look at how we are helping form a civilization of love that recognizes the dignity of each person. The first step is deeply reflective prayer on the part of the Church. The United States Catholic Conference of Bishops, together with pastors and laity, ought to make this a priority of prayer in an intentional and directed way, one that includes spiritual discussion and discernment.
Sadly, parents seeking the comfort and wisdom of the Church in the difficulties of raising, educating, and forming a child with ASD will not easily find an avenue of assistance through the USCCB website, and rarely through individual parish and parochial school websites. The Pastoral Statement by the US Catholic Bishops on Persons with Disabilities was first issued in 1978 and then reissued in 1998. It is time for this statement, beautiful and edifying though it is, to be updated and expanded. The first step is to make this population of individuals—particularly ASD children and their families—a subject of intensive prayer.
I am confident that upon deeper reflection concerning ecclesial hospitality to children with ASD that the Church will see the need for better formation in our parish and Catholic school communities. Awareness is insufficient. Although media featuring children with apparent Trisomy 21 is becoming more frequent in Catholic publications, the inclusion of children with visually identifiable disabilities in print and digital media is not enough.
After all, we have identified the population we are speaking about as having no discernable outward signs to identify them with a disability. Only 13% of the parents surveyed say that they have spoken to their bishop about their child’s spiritual and developmental needs. 33% indicated that they felt that their dioceses were moderately attentive to their ASD children’s needs, while another 50% felt awareness and support was below the level of sufficiency. Only 17% reported their diocese’s level of awareness or concern as above average.
Parishes, still, are where families feel most comfortable discussing their children’s spiritual needs. 60% of the respondents indicated that they had spoken to their pastor about their ASD children. 90% said that they felt supported by their pastor in this part of their parenting journey. But 50% still said that attending Mass with their ASD children can be a challenge about half the time. 20% said attending Mass with their ASD children is challenging most of the time. A very fortunate 30% said that attending Mass as a family is rarely a challenge. What makes attending Mass with a child on the spectrum difficult? It depends on the child. For some children it is a sense of panic being surrounded by so many people. For others it is sitting still. Some children stim, grunt, and have trouble keeping quiet, thus “disturbing” people around them.
Example: a certain child has watched his parents and older siblings receiving the Eucharist nearly every Sunday of his life. Five years ago, when his immediate elder brother received his First Holy Communion, this became a cause for real distress for the boy. He wanted to receive the “Holy Bread,” as he called it, and Mass after Mass would cry and fuss because he could not. Telling him that he had to wait until he turned eight, or for “just three more years” was akin to saying “never.”
For such a child waiting is a kind of torture. Only after learning about Time Blindness were the parents able to put more effective supports in place to help the child be calm through the process of waiting. Part of his individually designed Applied Behavioral Analysis (ABA) therapy is consistent, repetitive work on the concept of time. Because of this, his religious sense is broadening and he is better able to experience awe and wonder about salvation history and his place in the world.
The playing out of such scenarios during the liturgy is understandably disturbing for those sitting close to such a family. It looks a lot like “bad” behavior, and subsequently “bad” parenting. Parents of children on the spectrum share stories of being-subjected to glaring and scowling by other adults in Church. This illustrates how moral formation is necessary in our parishes just as much for adults as it is for children. The liturgy is not a “consumer” event. Proper catechetical formation in the parish must serve to broaden our understanding of not only who our neighbors are, but how we are to greet them, treat them, and love them in the ordinary circumstances of our lives - such as sitting patiently beside them at Mass.
Catechesis: 73% of the families surveyed say their children are able to attend a catechetical program in a parish setting. 8% have the benefit of attending a program specially designed for children with disabilities, or that feature trained assistants. 28% assist with a program themselves so that they are able to aid their own children. 43% attend what would be considered a “regular ed” catechetical classroom.
Catholic schools: 30% of the families are able to send their ASD children to Catholic schools. 46% of the families send their neuro-typical children to Catholic schools. 77% of those who send neuro-typical children to Catholic schools, but are not able to send their ASD children to the same school, indicate an average to above average level of emotional strain in their families due to this difference between their children. 67% indicated that this difference poses a moderate to above average degree of spiritual difficulty for their ASD children. 57% of the families surveyed said that their Catholic schools would be unable to accommodate their children’s developmental needs. Given these statistics, the question, “Why are so many of our Catholic schools unable to meet the educational and catechetical needs of our ASD children?” is significant.
“The primary concern of a true and sufficient education is that of educating the human heart as God made it.” In this Giussani and Cavalletti agree. The education and formation of the whole person, building upon spiritual foundations laid methodically over time, is critical to every child. The needs a child has for additional support in mastering basic academic skills and behaviors ought not to alienate them from the Catholic classroom—whether it is a traditional day school or an after-school catechetical setting. A child on the spectrum often knows intuitively that there is something different about him- or herself.
The ASD child experiences this when they are excluded from play. They observe the difference when peers execute tasks with ease while they struggle to read, write, speak, or self-regulate. And for some, they see the difference when their siblings don a Catholic school uniform in the mornings, and they themselves do not. One parent shared, “Setting an ASD child apart from the community is not good for them in relationship to the faith. They feel separated enough.”
James K.A. Smith talks about people being weighed down by worldly cares and attachments, thus preventing us from ascending spiritually. Have our Catholic schools become overly concerned with achievement? If we become what we love, what is it that our Catholic schools love? What value is placed on a compassionate welcome of those who are vulnerable? Do we have an inordinate attachment to excellent test scores?
Or do we love and aspire to spiritual excellence for ourselves and our children? When asked what they would like to tell the bishops, one mom said, “Make children with special needs a priority in the educational settings in Catholic schools. I know funding is an issue always but don’t just send them away to the public schools.” Guissani said:
To say that faith exalts reason means that faith corresponds to the fundamental and original needs of the human person. Indeed, the Bible uses the word heart instead of the word reason. Thus, faith responds to the original needs for truth, goodness, justice (what is just!), love, and total self-satisfaction.
Our reason, and our thirst for justice, ought to compel us to create a world in which children, all children, are welcome to learn side-by-side the wonders of the Lord and the created world. Cavalletti addresses the fundamental need in a child for relationship. This identification with the other speaks to the dignity of the person. Adaptive techniques and support personnel are necessary for groups that include children with ASD. But in this, both children with disabilities and those who are neuro-typical benefit. Imagine a community where all children learn at an early age to accept differences between themselves and others. Thus, I posit that the pedagogy most necessary for children with ASD, as much as possible, is one that is adaptive to their needs while in the company of their neuro-typical peers.
Children on the autism spectrum face developmental, academic, and behavioral challenges every day. They can be some of the bravest, most-hardworking children; developing resiliency and tenacity over time. But as noted earlier, this is not a one-size-fits-all diagnosis. It is as varied as the almost 1.3 million children diagnosed with it in America today. Bishops, pastors, and administrators in dioceses, parishes, and Catholic schools have a unique opportunity to minister to families facing the bewildering maze of ASD.
One parent summed up the survey responses nicely by suggesting, “A diocesan point of contact or a few priest(s) that are known for their connection to those with ASD would be helpful especially as a confessor and one to help catechize.” Such a simple but helpful suggestion. Laymen and women raising children with ASD would be an excellent resource for framing a broader, more intentional response by the Church for this need in our communities. As this population grows, the need will grow more urgent. May the Church, as ever, hasten to prayer, and may the faithful be wise and deliberate in our response.
 Sophia Cavalleti, The Religious Potential of the Child: 6 to 12 Years Old (Chicago: Liturgical Training Publications, 2002), 3.
 Division of Birth Defects, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, “Data and Statistics on Autism Spectrum Disorder,” https://www.cdc.gov/ncbddd/autism/data.html, April 5, 2019..
 Ibid., “What is Autism Spectrum Disorder?,” https://www.cdc.gov/ncbddd/autism/facts.html, italics mine.
 Yael Leitner, “The Co-Occurrence of Autism and Attention Deficit Hyperactivity Disorder in Children – What Do We Know?,” Frontiers in Human Neuroscience, April 29, 2014.
 CDC, op. cit., April 5, 2019.
 Cavalletti, 13-36.
 Luigi Giussani, The Risk of Education: Discovering Our Ultimate Destiny, (Montreal: McGill-Queen’s, 2019), xxvii Preface.
 James K.A. Smith, You Are What You Love (Grand Rapids: Brazos, 2016), 14.
 Giussani, xxxii.
 Cavalletti, 8.