Soon, we will be opening a community within the Word on Fire Institute where people who are either interested in or affected by intellectual or developmental disability can come together for conversation, learning, and support. As we prepare to open the doors to this community, I thought it might be helpful to provide a short primer on disability.
Most would agree on general topics around disability: issues like including people with disabilities in school or church and that we need to protect women from those who would encourage them to abort following an adverse prenatal diagnosis. But we also need to be intentional in our response when we encounter people with disabilities at Mass. Those who are uncomfortable or don’t know how to respond may find it easier to accept and welcome them if they understand better about the more common disabilities and how they affect people’s lives.
First of all, the word “disability” is a big, broad category that is little understood. For many people, the word recalls images of those with physical disabilities like a paralysis that requires one to use a wheelchair, or blindness, or deafness. It is much more difficult for some to understand and accept persons with intellectual and developmental disabilities.
So what is the difference between an intellectual disability and a developmental disability? The term “developmental disability” is a broader term that includes intellectual disability, but it also encompasses other conditions like cerebral palsy, attention-deficit hyperactivity disorder (ADHD), Tourette syndrome, and autism spectrum disorder (ASD). About thirty percent of people with ASD also have an intellectual disability.
Intellectual disability (ID) is defined by the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, 5th ed. (DSM-5) as a condition that appears during the developmental period of childhood and adolescence, and results in significant limitations in intellectual functioning and adaptive behavior. Adaptive behavior is the ability to carry out age-appropriate activities. Typically, someone with an IQ of 70 or lower is considered to have an intellectual disability. Sometimes the cause of ID may be known through genetic testing, as is the case with Down syndrome, also called trisomy 21 (three twenty-first chromosomes); fragile X syndrome (a mutation of the FMR1 gene on the X chromosome); and many others.
Down syndrome, or trisomy 21, is the ID most people are familiar with and the one that is most easily identifiable because of the unique facial features these beautiful individuals possess. Down syndrome is caused by three copies of the twenty-first chromosome, but trisomies can also occur on chromosomes other than the twenty-first. Trisomy (also called aneuploidy) is an anomaly that happens at conception when, for some reason still not understood, one parent, typically the mother, contributes two copies of a chromosome to fertilization rather than one.
For those who remember their basic high school biology, the usual complement of chromosomes in a human cell is forty-six. Our gametes (sperm and egg) have half that number, or twenty-three, so that when fertilization occurs, the newly formed human being has the full complement of forty-six chromosomes; each half represents the genetic traits of the mother and father. When one of the parents brings an extra chromosome into their union, the embryo they have engendered together will have an extra copy of that chromosome, or forty-seven.
There are two other trisomies that occur less frequently than trisomy 21. They are Edward’s syndrome (trisomy 18) and Patau syndrome (trisomy 13). The lower the number of the chromosome where the trisomy occurs, the rarer it is and the less likely the baby will survive to birth, or long after birth. Trisomy 13 occurs only in 1 in 8,000 to 12,000 live births, while trisomy 21, or Down syndrome, occurs in about 1 in 770 live births. Notice the term live birth. Tragically, many children who are prenatally diagnosed with a trisomy are aborted. It is also often the case that an atypical embryo will die before birth—often soon after conception.
Human reproduction is a beautiful but complicated process. This beauty, however, can never be overshadowed when nature departs from its typical process and delivers a child with a disability. Every birth is the creation of a new life and a unique gift of our Creator. Parents who have avoided prenatal diagnosis, or who have received an adverse prenatal diagnosis and accepted God’s will for the child’s birth, learn a great deal about love. Our capacity always exceeds what we think is possible.
With genomic sequencing (a process that comprehensively analyzes the human genome) as sophisticated as it is, even some of the rarest genetic conditions can be identified. Trisomy is the easiest to identify without sophisticated technologies, but even with the technologies available the cause of some IDs still remains a mystery.
Intellectual disabilities are not always caused by a genetic anomaly. They can also be caused by fetal alcohol syndrome, birth defects, and even infections during pregnancy. Head injuries or stroke can also result in a loss of cognitive functioning or adaptive behaviors at any point in life. Some people say that all of us are only “temporarily abled.” Tragic accidents, or the cognitive decline that too often happens when we age, leave many of us, at some later point in life, disabled.
Developmental Disability and Autism
The most prevalent developmental disability that affects an increasing number of lives in the United States is autism. According to the latest statistics from the CDC (2022), 1 in 36 children at eight years old were diagnosed with autism spectrum disorder (ASD). In 2018, that statistic was 1 in 44, and in 2016, 1 in 54. There are many questions surrounding this increase but no consensus. Some believe it is attributed to changes in the diagnostic criteria or criteria being better applied. Others believe that the increase could be attributed to environmental factors. No one really knows for sure, but it is very likely a result of both factors.
Regardless of the cause, the increase presents a need for better understanding, both from the medical/scientific community for care and treatment, but also from our parishes and those of us who know people affected by ASD.
As the name suggests, autism appears in individuals on a spectrum from very mild to severe. As I stated previously, a conservative estimate is that around 30 percent of individuals with ASD also have an intellectual disability, although it is sometimes difficult to sort out whether the ID is a result of autism or a co-occurring condition. Some people with ASD are non-speaking and others function at a high level in society. Some are brilliant artists. At least one is even a priest!
Symptoms of ASD are not present at birth, but usually begin to appear before age three. The cause of ASD may, at least in some cases, be genetic, but what causes ASD is not yet known with certainty. Researchers believe it is likely caused by a combination of factors that change the trajectory of development in early childhood. These factors make diagnosis of ASD difficult and especially challenging for parents who may see their children develop typically up to a certain young age, and then begin to lose the social and communicative skills they had already begun to acquire.
Many families who have children with autism feel conspicuous at Mass because of their children’s behavior. Those living with autism have sensory abilities that exceed those of the rest of us. They can easily become over-stimulated and engage in vocal or physical behaviors called “stimming,” like flapping their arms or crying out and making nonverbal vocal sounds as they try to regain control of their feelings. Understandably, these behaviors make their families self-conscious, and therefore it is important for us to make them feel welcome. These behaviors can easily inhibit a family’s willingness to bring their child to Mass.
Between 2 and 3 percent of the population is affected in some way by an intellectual or developmental disability. A 2014 Scope poll in Great Britain showed that 67 percent of people questioned reported that they felt uncomfortable talking with a person with a disability. Their biggest fears weren’t of the disability itself, but that they might seem patronizing or say something that would upset the person.
With understanding comes a greater comfort in welcoming those with disabilities into our parish communities. It would be hard to say something wrong and upsetting. It is far more likely that silence and aversion will cause alienation from the parish community and an eventual departure to another parish, religious denomination, or an exit from religion altogether. That would be a regrettable thing for sure.
Next time you see someone with an intellectual or developmental disability at Mass, reach out and say hello. That could be the beginning of a beautiful relationship, and you might speak up just at the right time before that family decides to leave your parish.