I just like Lego

Dallos, R

http://hdl.handle.net/10026.1/10265

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“I just like Lego!” Self-Autism Mapping as a non-totalising approach
Rebecca McKenzie and Rudi Dallos

The nature of the problem
In the past year we have met a number of children with autism and the experience is always interesting and often enjoyable. We are lucky enough to know some wonderful people who care for and teach children with autism. On one visit to a support centre within a primary school we joined a select class of four 7-year-old boys and being introduced to a real professor from the university they began a conversation about the nature of atoms. One of them remarked that atoms can’t touch one another. This led to one of his classmates reflecting on the fact that human beings are made of atoms and consequently are not technically able to touch one another. We then moved on to discuss the game of tag and whether the rules of the game are actually tenable given that it is not actually possible for one person to touch and hence ‘tag’ another. Our philosophical musings with the children were cut short by the teacher who was endeavouring to teach the boys how to wash their hands.

On another occasion, at another ‘special’ school, Becky shared snack time with three children with autism, two boys and a girl. The little girl didn't look at her, or any of her peers, appeared to be unaware of her presence and didn't speak. She was given a bowl of cereal. Becky remarked that it was a little late for breakfast and one of the little boys informed her that “she only eats that – because of the autism”.

Later Becky went to find the little girl to say goodbye and was told that she had gone home because she had an epileptic seizure.

We tell these stories to communicate the confusing array of symptoms associated with autism. Official diagnostic criteria seem to present a pretty straightforward list: children with autism have impaired social communication and social interaction and engage in repetitive, restricted interests.

The picture is rather different, however, when you discuss the problems these children face with family members, carers and teachers. Autism almost never occurs without additional diagnoses or secondary symptoms including ADHD, epilepsy, maladaptive behaviour, anxiety, depression, sleep disorder and digestive problems. The complexity of autistic symptoms is compounded by the fact that it is a spectrum disorder, which means that children with a diagnosis can have severe or mild symptoms. They also have an unusually wide range of intellectual ability. Some children have severe intellectual impairment and no language at all. Others are able to take degrees before they reach adolescence.

The core and associated symptoms of autism all appear to some degree in the typical population. We all know people who are not comfortable with social situations, who are exceptionally bright or have obsessive interests about which they recall tiny details, which for many of us may seem inconsequential. Given the confusing variation in the severity and presentation of symptoms, the presence of the symptoms (in a less restricting form) within the typical population and the additional problems these children face; it is not surprising that families tend to lack a clear picture about which of their child’s behaviours are attributable to autism and which are not.

In fact, everything a child with autism does can pretty easily be explained with recourse to something that has been written about the condition and its associated features, hence there is a marked tendency for these children to ‘become the diagnosis’. This lack of a clear picture of what the condition consists of is paralleled by the fact that there is also considerable debate amongst professionals, clinicians and researchers working in this area.

For example, Asperger Syndrome has been dropped from international diagnostic criteria, largely because it was found to be too unreliable to employ diagnostically. However, many children and their families have become organised around using this diagnostic classification and have claimed it as a positive label that distinguishes them from the emotional, illogical beings they often describe as ‘neurotypicals’.

Diagnostic classifications can serve to define a person’s sense of identity – he ‘is’ autistic or he has ‘Asperger’s’. Unfortunately, such classifications can confer an identity on the person that is totalising (White and Epston, 1990; Anderson and Goolishian, 1986). The person may become seen by others and see all aspects of themselves through the lens of the label which focuses on a list of ‘impairments’ or disabilities from which there is typically no prospect of recovery. Arguably, a totalising view of autism is not necessarily advocated in the diagnostic system, especially as autism is a spectrum condition. People with autism may have mild or severe symptoms and members of..

Self-Autism Mapping (SAM)

Much of Michael White’s early work on challenging internalised, totalising concepts (White & Epston, 1990) involved conversations with children that were infused with a sense of fun and enjoyment. Inspired by White’s narrative approach, Self-Autism Mapping (SAM) was developed as a visual tool suited to children with autism—particularly those with limited verbal language and a preference for visual communication.

SAM begins by introducing the child to two simple figures: one representing “Just Me” and the other “Me and Autism”. These figures can be redrawn collaboratively by the child and their family, encouraging creativity, personal ownership, and a joyful exploration of identity. The child is invited to use different colours to show which parts of themselves feel unaffected by autism, and which parts they associate with it.

At a later stage, a dotted circle is introduced, offering space for aspects the child feels uncertain about—traits or behaviours that sometimes feel influenced by autism, or only to a certain degree.

Children are also encouraged to draw familiar settings they experience regularly, such as home, school, or the local park. A visual timeline of a typical day can also be created. These drawings become a platform for conversations about when, where, and why autism may feel more or less challenging.

Case Example: Nancy and Marie

Additional drawings can be created of familiar contexts the child regularly visits (home, school, the park, sports centre etc.) and a timeline of a typical day, in order to facilitate discussions and visual representations around where, why and when the autism is more or less troublesome. We used SAM during a series of family therapy sessions with Nancy, an 8-year-old girl with Asperger Syndrome (High-functioning autism) and her Mum, Marie. Nancy was happy for the therapist to draw her under her instruction and the process caused some discussion and laughter for Nancy, her Mum (Marie) and the therapist (Rudi):

SAM was used during a series of family therapy sessions with Nancy, an 8-year-old girl diagnosed with Asperger’s Syndrome (a form of high-functioning autism), and her mother, Marie. Nancy was happy for the therapist, Rudi, to draw her under her direction—an interaction that quickly became lively and humorous:

NANCY (laughing, looking at the drawing): I don’t look fat!
RUDI (laughing): Sorry, Nancy, sorry. Yeah, we’ll put a little tartan... (draws skirt)
NANCY (laughing loudly)
RUDI: Nancy... if this is you, I’m sorry—it’s a terrible drawing, right?
NANCY: (unintelligible, laughing) Aghh, I’m fat as a balloon!
RUDI: And this one is you and Asperger’s.
NANCY: Asperger’s?
RUDI: Yeah, that’s right. I know this might sound funny, but—how much of you doesn’t have Asperger’s, and how much does?
NANCY (draws): That much has... that much is the other girl. My feet haven’t got Asperger’s!
RUDI: No?
NANCY: My arms!
RUDI: Your arms haven’t?
NANCY: And my hands.
RUDI: Arms and hands, okay.
NANCY: My eyes aren’t!
RUDI: They’re not?
NANCY: No! My brain is.
RUDI: Your brain is—okay, that’s interesting.
NANCY: My mouth is, yes... my mouth is Asperger’s.
RUDI: Okay, well done. That’s good!

This sparked a more detailed discussion between Nancy, Marie, and Rudi about the parts of Nancy’s brain affected by Asperger’s, and about situations where it felt most problematic—especially at school and in social interactions:

NANCY: Things just come out that I don’t mean.
MARIE: Things come out you don’t mean when you speak?
NANCY: Yes.
MARIE (pointing to the red-coloured area Nancy had marked as affected): Do you think that’s coming from this red bit here?
NANCY: Yeah.
RUDI: What do you think, Marie? I know this might sound strange, but how do you see it? Which parts of her brain... (Asperger’s)?
MARIE: I think, um, socialising...
RUDI: Yeah.
MARIE: When you’re with other children, Nancy, sometimes it’s a bit difficult, isn’t it? Not always—you’re doing really well with your friendships but...
NANCY: Especially Ashleigh!
MARIE: Sometimes you think they’re being mean to you, don’t you?
NANCY: Mhm.
MARIE: And that—do you think that comes from the red?
NANCY (nods)
RUDI: Sometimes you think, “my friends are mean.” Is that right?
NANCY (quietly): Yeah. Sometimes I think they are mean—and they’re not.
RUDI (pointing to the drawing): So this one here—“sometimes I think they’re mean and they’re not”—this is the confusing bit, isn’t it?
MARIE: Hmm, yeah.
RUDI: And that’s hard for all of us, isn’t it?
NANCY: Yeah?
MARIE: Sometimes it’s hard to figure that out, right?

SAM enabled Nancy and Marie to talk about Nancy’s behaviour at school and her difficulty interpreting the intentions of her friends. The activity allowed both Marie and the therapist to reassure Nancy that this was problematic for everyone, and was not necessarily to do with her diagnosis. Marie stated that she found SAM particularly helpful and referred back to it spontaneously in subsequent sessions. It allowed her to see the Asperger’s as affecting some of her child’s behaviour, some of the time and helped her to reframe some of Nancy’s behaviour as typical of any 8-year-old child. She and Nancy continued to reflect on when and where Asperger’s was most problematic. On one occasion, Marie stated that: “The Asperger’s has been hardly there at all this week.”

 Some final thoughts

SAM shows promise as an approach, which can support families to escape from a totalising disability model of their child. In some cases, however, families appear to be resistant to the possibility that not all of their child is ‘autistic’. This is particularly the case where an exclusively neurological model of autism is very entrenched, or where the parents carry a particularly strong sense of blame for their child’s condition (Dallos, 2015). For example, where parents believe that their child’s brain is ‘wired differently’ they may find it hard to see anything the child does as not involving atypical behaviour. For these families starting to consider what, if anything, might be in the ‘Not Sure’ circle may be a tentative process and they need support to avoid feeling that their understanding is threatened. Here again Michael White’s externalising approach can be helpful in exploring, for example, what influences the autistic symptoms, how they vary depending on who they are with, where they are, time of day and so on. This approach may also be less threatening for parents who feel that any erosion of the medical model will result in blame being placed upon them. On the flip side, however, SAM can be helpful for families suffering from a sense of bereavement, post diagnosis, for the typical child they expected to have. Here Sam allows the family to see, in a very tangible way, that their child is a typical child ‘with autism’. SAM is designed to help families recognise that their child is sometimes just a child like any other. It is in this way a non-totalising approach. There are overlaps here with White’s (White and Epston, 1990) work with children using externalising conversations. There are some important differences to be acknowledged, however, in that White generally used externalising conversations to objectify a particular behaviour and separate it from the person. In our case we are responding to a condition, which is recognised by many families to have both negative and positive symptoms (for example, savant skills). Whilst we are informed by White’s work, we are not claiming that SAM can eliminate the symptoms of autism. Nor do we wish to undermine families’ experience of autism, especially where that experience is perceived to be positive and non-problematic. However, consistent with his approach we do believe that our approach can help to reduce some of the negative aspects of its influence on all aspects of a child’s life. We suggest that SAM draws on established narrative family therapy approaches, but is an innovative approach in the context of work with autism. We invite clinicians to consider experimenting with it to develop it is a format for working with families. We also suggest that it deserves further study, in particular, research needs to explore how the visual and non-verbal elements of SAM can be developed for use with children who have intellectual disability alongside autism.

References

Anderson, H., Goolishan, H. A., & Windermand, L. (1986). Problem determined systems: toward transformation in family therapy. Journal of Strategic and Family Therapy, 5(4), 1–13.
Dallos, R. (2015). Don’t blame the parents: Is it possible to develop non-blaming models of parental causation of distress? In C. Newnes (Ed.), Children and Society: Politics, policy and intervention. London: PCCS Books.
White, M., & Epston, D. (1990). Narrative Means to Therapeutic Ends. London: Norton