Autism and the Church

Bible, Theology, and Community

Grant Macaskill

• Publisher: Baylor University Press
• Year: 2019
• ISBN:
  9781481311267
• Topic: Théologie et religion
• Subtopic: Théologie chrétienne

An estimated 76 million people worldwide are affected by autism—current figures suggest that 1 in 100 people live somewhere along the autism spectrum, though many remain undiagnosed. Frequently, autism occurs alongside other conditions, such as anxiety or depression. Yet despite autism's prevalence and impact, the church remains slow to adapt, with responses that are often poorly informed and irresponsible. In Autism and the Church Grant Macaskill provides a careful, attentive, and sustained analysis of the reality ofautism within the church and how this should be approached theologically.

Macaskill demonstrates that attempts to read the Bible with reference to autism are often deficient because they move too quickly from the study of particular texts to claims about the condition and how it should be viewed. This leads some Christians to see autism as something that should be healed or even exorcised. Macaskill instead invites readers to struggle with the biblical canon, in ways shaped by the traditions of the early church, to a process of interpretation that calls upon the church, following Christ's teaching, to cherish those who experience autism as part of the diverse gifting of Christ's body.Accordingly, he callschurches to considerthe implications of autism in their congregations and to explore how best to accommodate the particular needs of autistic people in public worship and pastoral care, while valuing their distinctive contribution. In short, Macaskill challenges the church to "think biblically" about autism.

Autism and the Church teaches readers that those with autism belong to the church, demonstrating that, if responsibly read, the Bible provides a resource that enables the church to recognize the value of those with autism. Macaskill shows how the Bible can help both individuals and church bodies flourish, even as the church deals faithfully with the opportunities and challenges that come with understanding autism. He writes as a biblical scholar intimately familiar with the experience of autism, dealing honestly with the real difficulties that can accompany the condition, while challenging misconceptions.

1

Real Autism

Characteristics and Explanations

Autism is a lifelong, developmental disability that affects how a person communicates with and relates to other people, and how they experience the world around them.1

The core definition given above is taken directly from the home page of the UK National Autistic Society. Despite some differences in the clinical and diagnostic literature used in North America and the rest of the world,2 it is one that would be endorsed by healthcare practitioners around the world. While there is some debate about the use of the word “disability,” which will be considered later in this chapter, the definition provides a useful starting point for thinking about what the term “autism” labels. Some elements of the statement may be familiar to readers, particularly the identification of social and communicative differences in those affected by the condition, but other elements may be surprising. Few people are aware that autism involves complex and varied sensory issues that affect how the person experiences and even perceives the world. Smells, sights, sounds, colors—all of these can be quite different for the person with autism, perhaps because their sensory information is differently “filtered” than it is for other people. Increasingly, in fact, this is seen as a (or even the) key element for how we understand the condition, rather than a side effect, which is how it was treated in some earlier research.

The word “autism” itself can be traced back to some of the earliest research into the condition, which was carried out in the period after the First World War and continued into the second.3 The word was brought into German, and then into English, from the Greek word autos, which means “self/himself/herself/itself,” depending on the case and context of its usage. The term “autistic” was applied to children who appeared to be compromised in their social and interactive abilities; a person who was “autistic” appeared to be shut off from the world, self-focused or even self-contained, compromised in their ability to interact with the “other.” When understood in this original or etymological sense, the word is highly problematic as a label, but it is unlikely to be changed, and, in any case, few people use the word with an awareness of its etymology. For most, “autism” is simply the word that labels this particular condition.

The identification of autism as a “lifelong, developmental” condition is vital to our perception of its causes and to the prospects for those who experience it. The most reliable current research indicates that autism is the result of the expression of genes,4 even if other factors may be involved in this expression. It is not a disease triggered by the exposure of infants to certain toxins,5 or a psychological disorder caused by parenting dynamics,6 but a genetically linked neurological condition, which involves a demonstrably different neural development than that seen in the wider population. Autism will not “go away” with the right treatment, although most people with autism can adapt, learning skills that allow them to navigate and understand social expectations that are intuitive to others, and to learn how to manage the relentless flood of sensory data that others filter out.

Some readers, whether because they have been persuaded by the claims that autism is a result of immunization programs or because they are committed to the possibility of divine healing (or even deliverance), may already be bristling at the assertion that it is a lifelong developmental condition. These particular issues will be considered in more depth later in the book. Here I will simply note two things and ask that readers reflect carefully upon them before deciding that that this book is hopelessly entangled with establishment-sponsored research. First, the evidence that autism is a developmental condition associated with differences in the physical neurology of the person is strong: there are demonstrable physical differences between those with autism and the wider population.7 While the model of the brain as a computer is really quite deficient,8 it is still helpful to consider autism as a condition in which the neural “wiring” is different from the wider population. Second, while these differences are demonstrable through clinical investigation, they are not obviously visible. People with autism do not look physically any different than other people. This is important, because it means that we will (perhaps subconsciously) assume that the person has developed “normally” and that any differences in behavior or experience are superficial and can be treated or undone. To illustrate this point, let me use an example from my own wider family. I have a relative with Down syndrome, whose sister has autism (of a kind that would commonly be referred to as Asperger syndrome). Because my relative with Down syndrome presents the usual physical characteristics that accompany that condition, few people would expect that her condition could be healed. Healing would change her entire appearance and, of course, her personality (which no one would want to see altered, because she is quite delightful). It is obvious that she has a developmental condition. By contrast, it is not physically obvious that her sister is a person with autism. It is easier to believe that she could be healed, or that her condition arose at some point during childhood, because there is nothing on the surface of her anatomy to indicate that her condition can be traced all the way back to the expression of her genes, even though this is the most likely explanation for her autism.9

Autism as a Spectrum

One of the most important developments in autism research has been the shift from using the term as a label for a very specific condition, marked by particular and quite severe symptoms, to using it for a spectrum of conditions, with symptoms varying in kind and severity. “Classical autism,” in which persons would be profoundly compromised in their social and communicative development, is now seen to be one particular point on a much wider spectrum, in which a range of characteristics may present themselves, and to varying degrees.

The move toward seeing autism as a spectrum of conditions is the key factor in the dramatic rise of the estimated incidence of the condition. When the label “autism” was associated only with a particular and quite severe point on the spectrum, the estimated incidence was understandably low: 1 in 10,000. Once researchers began to use the term for a wider range of conditions that had certain similarities to classical autism but were usually less severe in their effects, the estimated incidence naturally rose. In the English-speaking world, that shift really began in the 1980s, but took decades to filter down into frontline clinical activity and then into popular awareness. As this process has moved forward, the estimated incidence has grown dramatically, to the point where it is now common to hear figures like 1 in 200 or even 1 in 50. Importantly, these are only estimates: the actual diagnosis figures are still catching up, as many are only now coming forward for an adult diagnosis (since the condition was not known when they were growing up) and the diagnosis services are creaking under the weight of demand. In many areas in the United Kingdom, for example, the waiting time for diagnosis, from referral to consultation, can stretch to several years. This is an important issue for pastors and churches to be aware of: there may be persons in any congregation who are as yet undiagnosed. This requires distinct pastoral care, one strand of which must be to recognize that proper diagnosis requires proper diagnostic expertise. It is dangerously easy for pastors and church communities to diagnose one of their members as being “on the spectrum,” a judgment that usually goes with denigrating the person’s value or dismissing them as “eccentric.” Sometimes a professional diagnosis is not practical; even the UK’s National Autistic Society recognizes that self-diagnosis may be important for those who do not decide to enter a formal diagnosis process or who are on the lengthy waiting list.10 But this means diagnosis by the people themselves, not by their church or pastor.

The shift toward speaking of an autism spectrum (older literature tended to use “autistic spectrum”) was associated particularly with the work of Lorna Wing,11 whose categories were informed by the pioneering work of Hans Asperger.12 Asperger’s work was broadly contemporary with that of Leo Kanner, whose research dominated the perception of autism for decades. Kanner focused on those with the profound condition—the 1 in 10,000 who were once identified exclusively as “autistic”—and proposed various explanations for the condition that were “psychogenic” in character: autism, in other words, was a disorder that arose through social and psychological influence, notably that of the mother. Classical autism is still sometimes referred to as Kanner’s syndrome, because of his role in researching the condition. Hans Asperger, by contrast, worked with less profoundly affected children, whose positive qualities he was careful to document. Asperger’s early research took place at a time when Germany was moving toward the political environment associated with the Third Reich. Accounts of Asperger’s work have typically represented him as acting to protect vulnerable children from the policies of the Reich, but evidence has emerged more recently that calls this into question, suggesting that he collaborated with the Nazis.13 For those who have viewed Asperger as the champion of a more positive approach to autism, this has proved troubling. Whatever the truth of this might be, Kanner’s work was widely influential for decades, while Asperger’s went largely unknown in the English-speaking world until Wing’s research began to draw upon and publicize its categories. It is for this reason that the term Asperger syndrome (or disorder) began to be used of those who presented some similar characteristics to those with profound classical autism but who appeared not to be as significantly affected. Such persons might previously have been labeled as eccentric or difficult, but were not reliant on lifelong care, as those with profound autism were.

While Wing’s work was crucial in establishing the concept of the autism spectrum in Anglophone medical practice, Temple Grandin’s writings were arguably more influential in publicizing the concept. Grandin, herself autistic, is a brilliant researcher into animal welfare and husbandry (particularly housing environments), but her writings on autism helped to make the concept of the spectrum known within the wider population. She gave the public a first-person account of how her brain worked and opened the way for a more constructive conversation about autism and the spectrum of traits with which it presents itself.

The term “spectrum” needs some further comment before we consider the various characteristics that it tends to present. It runs the risk of being understood in linear and one-dimensional terms, like a progressive shading from white to black, through gray. This assumption of linearity is compounded by the fact that the word is often used in conjunction with some value-laden qualifiers, such as “high-functioning” and “low-functioning.” This can lead us to think that the spectrum is simply a range of progressively more severe characteristics, consistent in character but not in extremity, and always directly mapped onto the functioning of the person as a whole, which is basically subject to grading categories such as “high” and “low” (which, in turn, often lead to a judgment on the worth of a person). In truth, the term “spectrum” really labels the diversity of both the symptoms that might be associated with autism and their severity. Properly, its value lies more in its rejection of a concept of autism that is too narrow and singular than in its inference of linearity or its grading of severity. In fact, the language of “high-” and “low-functioning” will itself have to be interrogated theologically, something we will do later in this book. Whatever we might make of such language, though, it is always particular to the various characteristics present in the individual. One person might be labeled as “high-functioning” because they have been able to pursue a successful career, even though some of their autistic characteristics might entirely impair their ability to do certain activities or to deal with certain situations. They may lose the ability to speak because of sensory overload if someone nearby is wearing perfume or is whistling. Their relationship with a spouse may sometimes be difficult because they do not intuitively perceive certain expectations or reciprocate certain needs. In certain situations, they may struggle to function well, while in others they may excel. It is certainly the case that some autistic people, due to the nature and extent of their characteristics, will always be dependent on caregivers, but it may not be helpful to think of this in terms of “low function,” since doing so means making a number of judgments on what constitutes “proper” function. As far as possible, the language of “high function” and “low function” will be avoided in this book because it is so laden with these kinds of judgments.

Characteristics of the Autism Spectrum

What, then, are the characteristics of the autism spectrum, and why might they be seen as connected, rather than as distinct conditions? It would be possible to itemize a list of such characteristics and say that the presence of several of them is indicative, if not actually diagnostic, of an autism spectrum disorder. This is part of the guidance that is given for the identification of autism.14 For present purposes, however, it will probably be more helpful to cluster the characteristics to help illustrate the connections between them. It will, I hope, become clear fairly quickly that the various characteristics may be wrapped up with each other.

The best-known (rather than “most obvious”) cluster of characteristics of the autism spectrum relates to social interaction and communication. Autistic people typically do not perceive certain forms of nonverbal communication in the same way that others do, and, probably because of this, their capacity to participate intuitively in social interaction can be affected. They can range from the person who appears to be socially awkward or to miss certain cues through to the profoundly affected person, who seems to be almost shut off from the world. There are certain behavioral tendencies that go with this. Persons with autism often find eye contact difficult, or their eye contact is unusual and seen by others as “unnatural”: they may hold eye contact for longer than is usually considered appropriate, or may focus on another part of the face (such as the mouth), or may only occasionally look at the eyes of the other person. They may not perceive an emotional or affective state to be present in another person because they do not pick up on the body language or facial expressions that accompany such emotions; consequently, they may not respond intuitively to someone’s need for comfort or congratulations. Participation in social customs will often also be difficult. Greeting, for example, typically involves eye contact, facial expressions, and some kind of physical contact such as an embrace or a handshake; these things generate a sense of bond between individuals. For those with autism, however, such practices may not be intuitively meaningful or may even be quite uncomfortable. In some cases, the attempt to force eye contact onto a person with autism can be seriously distressing; there are countless horror stories of teachers or therapists seeking to do exactly this with a child who may not yet have been diagnosed, and even some stories of this being a deliberate treatment strategy.15 It is also something that can be difficult for an adult attending a church and being greeted at the door.

The second cluster of characteristics concerns the use of language by those with autism. Both language acquisition and language use tend to be different for those with autism. Again, this presents in a range of ways and to varying degrees of severity. In profound cases, those with autism can be effectively nonverbal and can remain so for their whole lives; this usually goes with a need for lifelong care. In less extreme cases, the use of language can be quite precise, often avoiding (or misinterpreting) figures of speech that are layered with meaning beyond the proper plain sense of the words used. This is often described as an “overly literal” use of language, but that is a rather imprecise label, since it really describes the perceived referentiality between the words used and what they are used of.16 Actually, persons with autism may have no difficulty in understanding or recognizing metaphor, which is not a literal form of speech. What they often have difficulty with are embedded idioms, especially ones that reflect affective or emotional matters, or uses of speech that run contrary to the plain sense of the words, such as irony or sarcasm. These uses of speech are better labeled as “imprecise” or “unsystematic”: they violate the natural principles of the language in use. They are something that people use all the time, of course: they are part and parcel of creative communication, and it is an element in most social interaction to break the normal practices of language with irony, sarcasm, punning, and so on. Such uses of language can be difficult for those with autism, however, at least until they have learned to identify the idioms or wordplays at work.

One of the things that is linked to both of the clusters just described is a tendency to use language with a degree of honesty that others find difficult. Autistic people often do not observe the social conventions by which people politely veil what they really think behind a form of words that does not exactly correspond to truth. T...