I sense a fair degree of hesitation to speak to you on this day about pastoral counselling for people with autism. I am not an autistic person myself (at least I have never been diagnosed as such), nor do I have any children with autism. My only experience is that sometimes I prepare and lead worship services for people with intellectual disabilities and then also get to deal with (disabled) children, youth and adults with autism and with their parents. For that reason I am therefore only a rather limited expert...

On Saturday, May 12, 2007, at a meeting focused on “faith and autism” I delivered a speech on the topic of “pastoral counselling for people with autism”. This presentation is published in this issue of Dienst, together with a reaction from (Rev.) Frans and Lia Wisselink who, as parents of an autistic son, are experts by experience when it comes to (faith and) autism. The meeting was organized by Dit Koningskind (“Child of the King” a Dutch organisation for Christian support to people with limitations), in cooperation with Eleos and SGJ.

On the other hand, the reaction I get to hear (when I express my hesitation) is: it is helpful when someone wants to address the topic of pastoral care for people with autism, because people have so many questions. What about the nature of the experience of faith of people with autism? And how do I as a pastor deal with persons with autism? Should I use different words than to non-autistic people? When should I do so, and when should I not? And then what should I say, or avoid? What works differently for someone with autism than it does for me, and how can I provide pastoral care? What about praying, reading from the Bible, celebrating the Lord’s Supper, and singing in church, and...? There are so many questions...!

Autism touches me. When I hear and read about autism and when I talk to someone with autism, I recognize certain things about myself (and in my mind I shout “yes” when I read that all of us share a small degree of autism, especially us men). But at the same time, I do realize that I am not an autistic person. Yet I so strongly like to know what exactly the experience is for my sister and brother in Christ who lives with autism. Because I want to continue to walk with her and with him in the path that God shows, and I want to share with her and with him what that path of God looks like in our personal life situations.

Not long ago, I led a worship service that started off differently than what I had indicated beforehand. I wanted to begin with a song at the start of the service, however someone in that congregation had died the previous week. And, as often happens, the congregation was informed about this and then sang a song, standing. This made me decide not to sing the opening hymn that I had indicated earlier, and instead to continue with the votum and salutation. After a short while I noticed a slight panic in one of the front rows. A mother was busy talking to her seven or eight-year-old son who seemed very upset and was gesturing with tears that...(yes, about what?). After the church service I spoke to the mother. Before the church service she had properly prepared her son and had told him what was going to happen. But I had interrupted the order and this had upset him. A few weeks ago he had been diagnosed with some likely disorder on the autistic spectrum...

What parent of a child with autism (or of an adolescent with autism) does not recognize this kind of experience? On the other hand, what can I do as a pastor to prevent such a panic reaction in this type of situation, or at least to respond to it in an adequate way?

Pastoral Care⤒🔗

What do we mean when we speak of pastoral care? Today I would rather not get into an elaborate discussion of what pastoral care implies or what it should be. In pastoral care it is about a person’s relationship with the triune God. I could also say it like this: it concerns the connection between the gospel of Christ and someone’s personal situation in life. What does a person’s situation look like in light of God’s gospel? A thirty-eight year-old man is diagnosed with an autistic disability. That is his personal situation in the light of (developmental) psychology and the scope of assistance and training. The light of God’s gospel does not erase such a diagnosis, on the contrary. However, it does show us that someone who is “different from others” is just as much a child of God as a non-autistic person. In pastoral care it is important to do justice to both of these aspects: being autistic and a child of God or, in other words, a follower of Christ with autism.

On this study day, I therefore describe pastoral care in the following way (precisely because it is about pastoral care shown by the Christian church): pastoral care is travelling on the road together — as a congregation of Christ and toward the day of Christ — and in the light of God’s Word to seek to understand and to experience together what God’s way looks like in our personal life.

A pastor is therefore always a travelling companion who is also on the road himself. Jesus himself was a pastor par-excellence when he travelled on the road to Emmaus with the two disciples (Luke 24:13-35). The Gospel says, “While they were talking and discussing together, Jesus himself drew near and went with them.” A pastor is someone who—by God’s provision—walks beside someone on his path of life and who is committed to ensuring that the person himself can keep on to walk with (even) more faith, hope and love.

But who can be such a pastor? Let me briefly clarify who I have in mind when it comes to the question of which people share a task in pastoral care. Three “kinds of pastor” come to mind:

1. Members of the church travelling together, looking out for each other because they all belong to the church of Christ together (mutual pastoral care).
2. Traditionally (i.e., in the Reformed tradition) the elders are active in providing pastoral care. As ordained office bearers, the elders have both a stimulating/equipping task as well as an executive task in pastoral care (ecclesiastical pastoral care).
3. In addition to members of the church and elders, pastoral workers and ministers are active in providing pastoral care. They are trained for their pastoral task and may be considered as “professionals” (professional pastoral care).

Whatever type of pastor you may be, it may happen that you have a particular responsibility for the pastoral care for someone with autism. So what does this “autism ministry” look like?

People with Autism←⤒🔗

By now we have already heard so much about people with autism today that I do not consider it to be very useful to say more about it. I want to briefly indicate what I believe are possible characteristics of people with autism based on four key concepts: information, interaction, communication and repetition. For myself I have increasingly arrived at the insight that autism can be characterized as a distinctive kind of development (especially social) in the growth process of people resulting in an “imperfect and non-automatic centeredness on the other” (as per Martine Delfos). This also implies that autism presents itself in endless variations and that we cannot speak in a generalizing way about “the autistic child (or ‘person’)” — such a person does not exist.

Potential characteristics of people with autism are:

• information (information processing: fragmented perception and hypersensitivity or insensitivity to sensory stimuli; spontaneous sensing of other people is not easy);
• interaction (a different reaction pattern in social contacts);
• communication (disorders in verbal and nonverbal communication; the mother tongue is often used figuratively; the expression of emotions is not easy; a preference for concrete communication so that figurative-abstract language is also understood as being concrete);
• repetition (repetitive behaviour, rigid patterns; predictability may reduce stress and anxiety).

And now I will right away move on to the pastoral counselling and guidance of people with autism, sometimes referred to as AutiCare.

Pastoral Guidance for People with Autism←⤒🔗

The description of pastoral care I gave earlier can easily be extended to a description of pastoral care in situations of autism: continuing to travel the road together, including church members with autism, and in the light of the Bible seeking to understand and experience together what God’s path looks like in our personal life situation, inclusive of autism.

The word “inclusive” is important to me. In the church everyone belongs, however idealistic that may sound. The church of Christ can and may think and speak “inclusively”: everyone belongs, including people with autism, but also children, young and old, women and men (even if they are divorced), people with a — physical or mental — disability, children of divorced parents, the deaf, the blind, addicts, gays and lesbians, people who have gone through experiences of loss and who are dealing with mourning processes, victims of violence, ex-prisoners, people dealing with psychological problems and those who are on the borderlines of society.

Information←⤒🔗

The information processing of people with autism is to me a deep secret that I would like to learn more about. For example, what about this “fragmented perception”? I understand that for many autistic people it represents a huge step to attend a worship service, because the threshold is high. There are so many people, so many stimuli, and so many noises, not to mention the often-abstract forms of language.

We can say so easily that a church service is the place to meet God and each other. But might this be true for an autistic person as well? In an effort to survive, an autistic person may not at all be looking for encounters...

And so is the reading of the Bible fragmented, too? Is the Bible the one book of God or is it merely a collection of fragments about God? For an autistic person, can the Bible be experienced as a love letter from God or is that too much projected in terms of mutual relationship and encounter?

Also the question remains as to what it means for the experience of faith of autistic people when it is in fact not easy for them to spontaneously have feelings for people...

How does an autistic person with his hyper- or subsensitivity to sensory stimuli experience a worship service or a pastoral conversation? Unfortunately, there is little research material. But a minister should not be surprised if a certain word that he uses would upset an autistic person, causing them to distance themselves immediately. And that might apply to a different term for another autistic person...

For any recipient of pastoral care, an engaged attitude on the part of the minister is crucial. For some target groups in pastoral care (and that includes people with autism), such an attitude is an absolute necessity. An engaged, empathetic approach, combined with clear, unambiguous communication, may be able to diminish the effects of fragmented perception and of stimulus sensitivity a bit. This seems to me to be an important point of interest: tangible and clear communication promotes the information processing of autistic people (it establishes an interaction between autistic people’s information processing and the way I communicate as a pastor: their information is my communication).

Communication←⤒🔗

The counterpart of this is that their communication is my information. That is, there is also an interaction between the way autistic people communicate and my method of gathering informing from them—my clear, concrete way of asking questions and of discussing matters.

I hear and read that there are conflicts in the verbal and non-verbal communication of autistic people. And also that the expression of feelings is not easy for them. Right away I can think of praying. How does that work in the faith life of people with autism? How do they pray? What do they pray for? I would dearly love to know more about it. At the same time, I do believe that the Holy Spirit knows the prayer intentions of autistic and non-autistic people and that he confirms their words.

Speaking of things that we do not perceive, we do know that visual language is considered the mother tongue of autistic people. They remember through visual images and seeing things. I hear autistic people claim that they have video images in their heads, and that several “channels” appear to be “live” at the same time. Many people with autism appear to have a sometimes-fabulous encyclopaedic memory for facts that are then stored as images. Does that also mean that the Bible is stored in their memory like a set of graphic novels? Yes, in the case of some autistic people this certainly holds true.

With this pictorial language as a given, the preference of autistic people for concrete communication is therefore not all that surprising. And I realize how many misunderstandings may arise in sermons and pastoral conversations because people with autism simply interpret all kinds of figurative language in a rather concrete way. Who would prove them wrong?

As I have said, the next point of thought for pastoral care has been given here: concrete, clear questions from me as a pastor will help to promote proper understanding of the communication with autistic people.

Interaction←⤒🔗

Another mystery for me concerns the reaction patterns of people with autism in social contacts. It is often completely different than usual, sometimes with very few connections (being introverted), but with someone else it can be very much seeking attention. These extremes also occur in pastoral contacts, and presumably also in the relationship of autistic people with God: either introverted (with at times having difficulty finding words to express something to God) or demanding a lot of attention (and then, to my perception, the rather easy submission of a long wish-list to God).

This implies also that the interaction of people with autism determines the warmth of their relationship with me as a pastor. Sometimes it seems that the temperature is extremely cool, but there can also be instances of solar warmth. That is another point of interest: their interaction affects the thermal energy of the pastoral relationship that I, as a pastor, intend to regulate for myself.

Repetition←⤒🔗

The repetitive behaviour of autistic people is well known. It provides a certain degree of security. Therefore, rituals may well be important for the faith life of autistic people. A ritual may also be able to inspire new energy for certain rigid patterns (also a known fact when it comes to repetitive behaviour). In any case, predictability will reduce stress and anxiety. That seems in any case to be a rule of thumb for worship services and pastoral conversations: if I do something different from the usual pattern, it is good to say so beforehand.

This brings me to a fourth point of interest for pastoral care: the degree of repetition of people with autism determines the character or colour of their relationship with me as a pastor. Sometimes there is only one colour (gray or maybe even black) because the feeling of insecurity prevails. But the relationship can also become multi-coloured because someone with autism slowly but surely feels more at ease with their pastor.

What is Needed for Pastoral Care for People with Autism?←⤒🔗

What are the essentials in travelling together in AutiCare? I already mentioned four points of interest.

1. There is an interaction between the information processing of autistic people and the way I communicate as a pastor.
2. There is also an interaction between the way autistic people communicate and my way of informing them as a pastor.
3. The interaction of autistic people determines the temperature of the pastoral relationship to which I need to adjust as a pastor.
4. The degree of repetition of autistic persons determines the character of their relationship with me as pastor.

Furthermore, the same tips that apply to “common-sense” dealings with people with autism apply to autistic pastoral care:

• Be concrete and clear, friendly and predictable.
• Provide structure, coherence and visibility.
• Do what has been agreed and be exactly on time.
• Respond on the basis of facts, not on the level of insights or feelings.

But who can be such a pastor for people dealing with autism? For me, the three types of pastor are in view: church members, elders and pastoral workers/ministers. My starting point is that it begins with the Christian church itself, and that there is opportunity and room for people with autism (and for everyone). And I imagine that the pastoral team (or whoever is responsible for the vision and policy regarding pastoral care) is committed to creating the conditions that proper pastoral attention is given to people with autism. It is important to know who in the congregation may have experience with this. For each congregation and every situation it can be further determined who will take a leading role in structuring the pastoral care of church members with autism. This may also include that someone or some people will receive specific training for this, if necessary. It could be a member of the congregation (perhaps someone who is more prepared based on his or her experience or work situation), or an elder, the pastoral worker, or the minister. For me it is important that such specific tasks do not end up on the preacher’s plate in advance. I would rather see a congregation thinking and acting inclusively (“everyone belongs, including people with autism”) and that subsequently it is determined which role a pastor can best take on within such an inclusive approach. Let us not ask too much of a minister and then judge him for what he cannot accomplish on his own.

As Jesus travelled on the road with the disciples to Emmaus (Luke 24:13-35), so it also applies to what this is all about: showing pastoral care means to travel the road together, inclusive of congregants that deal with autism, toward the great day of Christ.

In Conclusion←⤒🔗

Faith implies knowledge and trust. Believing is a relational reality. It is about relationship with God. Believing is not easy for anyone, because it is about letting go and surrendering. That is why, as a non-autistic person, I can learn a lot from the courage of faith of my fellow believers who are dealing with autism.