AUTISM: CURRENT ISSUES 46

 

This set of summaries begins with a reference to the possible confounding of autism or ASD with reactive attachment disorder, along with differentiating features.

 

The second issue covered is the long term nature of the way(s) in which the parents of children with autism cope with the challenges and responsibilities, and how their strategies change over time.

 

The final section describes two recent and innovative strategies by which to enhance social understanding and communication among autistic children …. the first involving human faces (with various expressions) superimposed upon vehicles which run on tracks by which to facilitate the ability to recognise emotions; and the second involving the use of web cameras and monitors by which to encourage greater verbal output and self-monitoring thereof.

 

M.J.Connor                                                                                            February 2007

 

 

Autism/ASD and Reactive Attachment Disorder

 

The starting point for this particular set of notes was the report in the national press (Cohen 2007) of one of the studies designed to gain accurate estimates of prevalence and associated data with respect of autism across Asian countries (given that the emphasis and implications have focused almost exclusively upon data from western countries … notably America and the UK).

 

This particular study is being led by Roy Grinker (a US anthropologist) and Young Shin Kim (a child psychiatrist working at Yale, but Korean born) and is looking at incidence in South Korea.

Already, it is reported, barriers are being set up against their investigations based upon a disagreement with, or even actual resistance to, current and accepted views about prevalence and aetiology. 

 

For example, reference is made to the stance taken by Michael Hong, professor of psychiatry at Seoul University, who disputes the general perception of prevalence of autism and ASD, and believes that the estimates are an exaggeration of the true picture.

 

Hong’s own view is that those behavioural symptoms which are frequently taken as indicative of autism may actually be a response to environmental (familial) circumstances …. a reactive attachment disorder.  

This is a matter of a failure to achieve a positive bond between the infant and the parent or carer (usually the mother).  

 

As a result of endogenous or exogenous factors, the parent/carer is not able or willing to respond to the attachment overtures of the infant; and Hong points to  the significance of exogenous factors in respect of the dramatic social and cultural changes impacting upon parents in this part of the world.

 

Further, Grinker is quoted as saying, existing research and its implications are a challenge to the long established cultural view in Korea about the role of women and parenting.  It is unacceptable that autism shall be seen as a condition for which the whole family might be seen as somehow responsible. 

Therefore, reactive attachment disorder is an alternative and more acceptable  diagnosis if it means that the blame can simply be  attributed to the mother. 

 

The anxiety expressed by Kim is that any continuing absence of research into, and understanding about, the nature and prevalence of autism and ASD will limit services available in South Korea (since, it is argued, the higher prevalence rates in America and the UK have been the major impetus for earlier diagnosis, better provisions, and less anxiety/stigma about the condition).

 

The notes produced by Gurian (2001) describe attachment as the intimate bond between the very young child and the primary caregiver. This bond is vital for emotional development and underlies the capacity for establishing other relationships. 

Reactive attachment disorder (RAD) may be the appropriate diagnosis when a child below the age of 5 years shows disturbed and developmentally inappropriate social relatedness, and does not make or respond to social communications.

 

One illustrative case-study include references to a child’s physical growth, but clinging behaviour, limited eye contact, and minimal interest in toys or in other children.

Other case studies include a description of symptoms such as physical withdrawal into a corner and constant rocking; or an inability to differentiate among other people.

 

(However, one can see why an initial awareness of such symptoms might lead to a suggestion of autism or ASD as the diagnosis.)

 

Gurian stresses that reactive attachment disorder (rather than autism) would be the diagnosis when there is clear evidence for disturbed and disturbing early environments involving marked deprivation of time and attention.  This might include repeated changes of caregivers, or a disregarding of the child’s physical and emotional needs ….including those for comfort, stimulation, and affection. 

 

She goes on to describe how children with RAD show deviations from normal development patterns. 

Some children may show signs of malnourishment.  There may also be either inhibited or over-vigilant reactions … a kind of cautiousness, or a mix of approach and avoidance.  Behaviour commonly appears listless with minimal spontaneity or reciprocity, and older children may display little interest in their surroundings.  Delayed or limited reactions may be observed to stimuli which would evoke a rapid response in other children; and their approach to other people may be marked either by an anxiety or by indiscriminate seeking of contact.

 

Two forms of RAD have been identified. 

 

The inhibited type refers to those children whose major symptom is a persistent failure to initiate or to respond to social interaction in an appropriate way.

The disinhibited type involves a willingness to approach anybody and everybody in an undiscriminating way … a lack of selectivity in the choice of attachment targets.

 

Gurian recognises how RAD may resemble other disorders, including autism or ASD.

However, she advises that the discriminating factor between RAD and these others is the deprivation of the circumstances and lack of social/emotional supportiveness associated with RAD.  This may include a lack of mother-child interaction; the child’s inexperience of  being held; poor verbal and sensory stimulation; and inadequate physical care.

 

On the contrary, autism or other pervasive disorders usually arise in the context of positive and supportive psycho-social environments.  The child with autism or ASD may show a lack of responsiveness to other people, but it is not of the listless or apathetic kind that is common among children with RAD, and they may show particular, even compulsive, attention to selected stimuli.

 

The atypical course of development among children with autism or ASD is not a matter of inadequate parenting ….. unlike RAD where neglect rather than a neurological impairment or anomaly is the causal issue.

 

A similar set of views is expressed by Rosinski (2001) who stresses that autism is not an attachment disorder even if, superficially, it may look like one.  The essential feature of RAD is the severely disturbed and developmentally inappropriate social relatedness that begins before 5 years of age which is associated with grossly pathological care.  This may have taken the form of a persistent disregard of the child’s basic needs for comfort, stimulation, and affection …. although it is recognised that some children are able to make stable attachments and social relationships despite  the marked neglect or abuse. 

 

Rosinski recognises the risk that autism and RAD can be confounded given the overlapping of certain symptoms, along with the fact that certain behaviours associated with autism (such as sensory defensiveness or speech and language delay)

and which would differentiate it from RAD, are not always present in the autistic child. 

 

Her advice is to follow the DSM-IV guidelines to the effect that, if RAD is to be the diagnosis, one would, first, have carefully explored the diagnostic criteria for ASD and other pervasive developmental disorders and would have been able clearly to rule out such disorders as underlying the observable signs and symptoms.  

 

Parental Coping Strategies

 

The paper by Gray (2006) begins with an acknowledgment of the stress placed upon the families of children with autism as a result of the problems with communication and emotional expression, as well as the behavioural difficulties, that they have to manage. 

 

Gray also recognises how the families usually do manage the problems, but the existing research on autism and family coping is of a cross-sectional nature so that there is little information available about the ways in which the strategies change over time.

 

A survey of existing studies (looking at how families manage during particular stages of the children’s development) shows that the research has largely followed one of two patterns.

 

The first has involved quantitative methods by which to determine those factors which can compensate for the stressful effects of autism in the family.  Such factors include the level of social support, the type of support, the absence of additional sources of stress, etc.

 

The second has been more qualitative and has looked at the particular problems experienced by families or the patterns of coping adopted by the parents; and the kind of help available from family and friends, service providers and support groups, and religion. 

 

Existing evidence does suggest a change in coping style or strategies over time. 

For example, Lazarus (1996) found that there is a general tendency among young adults to adopt problem-focused coping strategies (seeking to deal with a situation), while older adults are more likely to use emotion-focused strategies (seeking to shift the focus of attention from the source of the stress). 

 

The pattern observed reflects one earlier finding of this present author that parents of young children with autism often maintain expectations that, with the increasing age of the child, substantial progress would be made towards typical performance …. although the literature does not support this optimism.  This being so, one might hypothesise that, over time, there would be a shift towards a more emotion-focused style.

 

In the currently reported study, the participants were drawn from parents of children attending a specialist centre for autism in New South Wales.  Most of the children in question were diagnosed with moderate to severe degrees of symptomatology, and were within the age range 6 to 12 years. 

 

Initial interviews concerned the history and referral experience, presenting symptoms, the effects of the child’s problems on the parents’ well-being and social situation, coping strategies, perceptions of the autistic condition, and expectations for the future.

Follow up interviews were conducted 8 to 10 years later.

The main focus was upon the style of coping and what the parents felt to be most important overall factor in helping them.

 

From the results, Gray reports that the most striking difference between initial and follow-up comments related to the marked reduction in the number of coping strategies. 

It was speculated that this could reflect the reduction in the level of emotional stress experienced by the parents (as a result of the improvement in the manageability and behaviour of the children such that life was much easier despite the continuing symptoms of autism).  Further, at the time of the initial interviews, many of the parents would still have been seeking to come to terms with the diagnosis of autism and to manage the child’s particular needs, with the corresponding requirement to adapt psychologically and practically to the implications.

 

Meanwhile, there were also changes in the type of strategy. 

Initial reports had indicated that recourse to treatment services and to the support of members of the wider family were the most popular strategies. 

Follow-up reports indicated a marked decline in the use of treatment services … largely because the children had finished statutory education and were no longer enrolled at the specialist centre.  

 

However, this was not the whole picture since withdrawal from the centre was reflected in a shift in parental attitudes about the provision available.  There was a general acknowledgement among parents that the children had gained benefit from attendance, but their later comments were less positive than they had been earlier.  Some parents were directly critical of the services received.

 

Gray reports that part of the reason behind this appears to be a matter of the change in the nature of the children attending the centre.  Rather than concentrating upon children with the more severe autism, there has been a shift towards admitting increasing numbers of children with high functioning autism or Asperger Syndrome, and the general emphasis at the centre was perceived by Gray’s sample of parents to have shifted towards catering for these higher functioning children. 

 

It is also possible that the decline in use of service providers reflects a limitation in the services available for adolescents and young adults with autism.

 

Meanwhile, using support available from other family members did remain an important strategy, albeit not to the same extent as reported initially.

Gray ponders whether this reflects the fact that much of the familial support would have been of the emotional type, and, over time, the parental anxiety and stress will have moderated with a correspondingly reduced need for support.

 

(There was also the possibility that the amount of support offered and taken up had not really changed, but that the coping strategies had “habituated.”   In other words, the support had become routine and taken for granted, such as the way in which the responsibility for maintaining close supervision over the child or adolescent with autism had been taken over partly by other children in the family and was no longer specifically mentioned … however important it continued to be).

 

The number of parents who cited religion as a coping strategy remained constant over time, but the proportion of coping strategies involving religion increased.  This was seen as a matter of recognising the permanence of the autistic condition and of putting it into a meaningful context …. ie, a belief in God and the purpose behind experiences and events.

 

Social withdrawal tended to decline over time, presumably reflecting the more manageable and improved behaviours of the children as they got older (which enabled the parents to become involved in increasing social interactions) … although it was acknowledged that this could also have reflected the parents’ adjustment to looking after a child with autism as much as any actual improvements in the child’s behaviour.

 

Gray appears to favour this latter interpretation given his citing of parental comments to the effect that, despite behavioural improvements in the child, there were still social restrictions imposed upon family opportunities to the point where life-style could be described as reclusive.

 

In his discussion , Gray restates the shifting pattern over time of the problems of looking after a child with autism, and of the means adopted by which to manage these problems. He notes, again, that parents had ceased to maintain over time any belief in the probability of marked change and improvement …. (which, one might presume, will have had some impact upon the quest for services and treatment facilities ??). 

 

The changes in coping strategies appeared to reflect both changes in the children and in the availability of services over time. 

As the children’s behaviour becomes more settled and predictable, so more typical family routines are established and less stress is experienced by the parents, to the point where fewer coping strategies are used (or, at least, fewer are perceived as being used).

 

The author concludes by acknowledging that further study is required in order to determine which of these two factors (the changing nature of the challenges presented by the children, or the accessability of services) is the more significant in influencing the changes in the parental coping strategies.

 

Enhancing Social Perception and Communication

 

Responding to governmental targets for reducing exclusion in society (an issue which may be particularly salient for individuals with autism and ASD) , Baron-Cohen et al (2007) describe their existing work in using a DVD for teaching emotion-recognition to children (of 8 years of age and above). 

 

The experience of this earlier work encouraged these authors to act on the probability that specific intervention can succeed in building this skill (described as mind-reading).

They collaborated in the production of animated films (“ The Transporters ”) aimed at individuals on the autistic spectrum including those with significant learning difficulties and pre-school children, and based upon the observation that both groups enjoy watching animated films about vehicles.

This enjoyment was hypothesised to reflect the strong systemising style among individuals with autism which is marked by a preference for predictable and rule-based systems …. as in the case of vehicles which travel along tracks, and which cannot change their routes (ie hyper-systemising, unlike much of the social world which is marked by unpredictability)

The Transporter films are based upon 8 vehicle-characters who are track- or cable- bound.  Onto the front of the vehicles are grafted images of the faces of actors whose expressions clearly reflect a particular emotion and which can be put into the context of the interactions between these characters. 

 

Each episode lasts 15 minutes and opens with a sequence involving a boy playing in his room with his toy vehicles. The boy leaves, whereupon the vehicles come to life and become involved in events which will enable the observing child to see different emotions reflected in the faces of the vehicles.  Some of the emotions are basic, such as happy, sad, angry, etc, while others are more complex such as jealous, proud, worried, etc.

The hope is that the children will tune in to these faces since, unlike faces in the real world, the context and movements are predictable, and satisfy the watching child’s preference for sameness (“systemising empathy”).

 

One evaluative study complete so far has indicated that, with access to the films for 20 minutes a day over 4 weeks,  a target group of children aged between 4 and 7 years, with base-line scores of emotion-recognition at a below-average level, were enabled to achieve scores equivalent to the average for typically-developing children.

 

It is recognised that, among children with severe autism, no single strategy will bring about benefits for everyone; but these films appear to provide a potentially effective resource by which to augment the choice available for children with autism and their families.

 

Finally, one notes the work in progress in a Devon primary school, and described by Palmer (2007) which responded to the challenge of persuading a child with Asperger Syndrome to talk about a book that (s)he is reading. 

 

The class of 9 to 11 year old children had been set the task of producing book reviews, aided by a series of questions to provide a structure.  The target child had been working her way through a lengthy book for some while, but was reluctant to express herself either verbally or in writing so that nobody could be sure how much she was comprehending of the content and what it all meant to her.

 

It was known that this child liked seeing images of herself, and the classroom webcam was set up in order that she could see herself (head and shoulders) on a monitor screen.

 

A positive response to this was observed; and ideas about the book and the content were elicited by questions from her teacher while both of them looked at the image on the monitor. 

 

This system became the routine, and the flow of information for each book review increased: and, while delivered via this TV interview process, the content developed to match the structure used by the rest of the class.

 

To explain why she is able to express herself more fully and confidently on camera, the child described her enjoyment of watching her own performance and the ability to recognise errors and make improvements. 

 

The teacher reports that motivation for reading has increased, and there is willingness to try different types of material, not only to provide the basis for a review but also to satisfy her interest in how the story is going to turn out. 

The webcam process is being tried in other elements of the curriculum, although the impact is less evident than in literacy.

 

(One might hypothesise that the benefits here are analogous to those associated with the use of computer-based learning with children who have a range of special educational needs …. ie  individualised to meet particular targets but also geared to the given child’s style and pace of learning, with the opportunity for continual feedback without errors or difficulties being made evident to classmates. 

Perhaps, too, the use of this quasi TV interview approach, is less direct than face to face interchange, and, thus, less challenging…. and the “technology” may help to disguise the effort that still has to be made !)

 

                                   *          *          *          *          *          *

 

M.J.Connor                                                                                            February 2007                     

 

    

           

REFERENCES

 

Baron-Cohen S., Golan O., Chapman E., and Granader Y.  2007   Transported to a world of emotion.   The Psychologist  20(2)  76-77

 

Cohen D.  2007   Breaking down barriers.  Education Guardian: 23^rd January 2007

 

Gray D.  2006   Coping over time: the parents of children with autism.   Journal of Intellectual Disability Research  50(12)  970-975

 

Gurian A.  2001   About reactive attachment disorder of infancy or childhood.  New York University School of Medicine  (AboutOurKids.org)

 

Lazarus R.  1996   The role of coping in the emotions and how coping changes over the life course.   In C. Magai and S.McFadden (Eds) Handbook of Emotion, Adult Development, and Ageing.  San Diego: Academic Press

 

Palmer A.  2007   Stars of the small screen.   Times Education Supplement (special education section.  56-57

 

Rosinski D.  2001   Reactive attachment disorder.  Spectrum (September 2001): Newsletter of the Madison Area Chapter of the Autism Society of America