© Mike Connor 2007.
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AUTISM AND ASD: PERCEPTIONS OF DIAGNOSTIC PROCESSES
Michael Connor (on behalf of
the S.E. and S. Central Regional Groups)
Abstract
The numbers of children diagnosed with autism or autistic spectrum disorder
(including Asperger Syndrome) has shown a marked increase over the last 25 years.
Reference is made to the debate concerning whether this reflects a real increase in prevalence or changes in the diagnostic criteria and enhanced screening for autistic symptoms.
Whatever the aetiological route, there is converging evidence for the significance of early intervention in achieving the most positive outcomes, with the implicit need to establish early and accurate diagnoses.
There follows a description of a small scale survey seeking the perceptions of professionals in Health and in Education concerning diagnostic processes.
Themes are outlined and implications set out.
Introduction
Autism has long existed as a diagnostic category, having been introduced by Kanner (1943) to describe children who show a persistent solitariness and difficulty in relating to others, an obsessive quest for sameness and a pursuit of repetitive activities, and poor communication skills.
Accordingly, observable symptoms characteristic of autism and autistic spectrum disorder (ASD) include :
Wing (1988) referred to the core characteristics of autism as the “Triad of Impairments” comprising limitations in social recognition and interaction, in communication, and in imaginative play and flexibility of thought and action. Wing made it clear, however, that while all children diagnosed with an autistic spectrum disorder will display behaviours reflecting these core features, the range and severity of symptoms will vary considerably across individuals.
Asperger Syndrome (first described by Asperger in 1944) has become recognised as a condition which shares many of the core symptoms of autism (poor social interaction, restricted patterns of behaviour and interests, and a preference for routine and avoidance of change) but which can be differentiated from autism in terms, for example, of apparently adequate (expressive) language, and cognitive scores at or above the average level, with implications for competence in dealing with the purely academic demands of the school.
It may be only when the difficulties in social skills and in making and maintaining relationships are evident that a firm diagnosis of Asperger Syndrome is made.
However, to suggest that Asperger Syndrome is simply a milder variant of autism risks underestimating the marked difficulties and stressors that may impact upon the individuals in question.
For these children and young people, there appears to be an enhanced risk of significant psycho-affective problems linked to their likely placement in mainstream school settings where the “invisibility” of their condition may lead to inappropriate expectations and subsequent negative evaluations, and where they come to realise their “apartness” from peers and their difficulty in achieving true affiliations, but remain unaware of why this should be so or how to bring about a positive change.
Autism has traditionally been regarded as a low incidence disorder but, over the last 25 years, there has been a considerable and sustained increase in the number of children diagnosed with autism, Asperger Syndrome, or ASD.
For example, one review (Fombonne 2005) has estimated that the prevalence for autism is at least 1·3 per 1000, and up to 6·5 per 1000 for ASD.
The observed rise in prevalence has stimulated much debate and epidemiological investigation, and one view holds that the increase in diagnoses is a function of more systematic screening and of changes in diagnostic criteria ... ie there has been no great change over the years in the numbers of children with pervasive developmental difficulties, but how they are classified has been subject to change. The very concept of autistic spectrum, with its range of degrees of severity and impact upon day to day functioning, as opposed to a black or white decision of autism (a severe condition) or non-autistic, will in itself have increased the readiness to give and to accept such a diagnosis.
Support for this perspective was produced by Barbaresi et al (2005) who identified increases in ASD diagnoses following the changes in the criteria set out in the Diagnostic and Statistical Manual of the American Psychiatric Association (and following changes in the system of funding for special education programmes).
One problem is the overlap of symptoms across a number of conditions so that there may be some confounding of autism/ASD with mental retardation, learning disability, childhood schizophrenia, language delay/disorder, or even ADHD.
Further, the focus upon autism and ASD may have led to some readiness to look for relevant symptoms or to interpret symptoms in this way. It has been suggested
(Shattuck 2006) that diagnostic substitution may arise, presumably as a result of this heightened attunement to the possibility of autism and ASD, especially if greater support is available for the children diagnosed in this way than for children with a similar level of disability but not so-diagnosed.
In the UK there has been a similar change in the prevalence pattern, illustrated by the report of Kaye et al (2001) which examined data from the UK general practice database and highlighted a seven-fold increase in incidence of diagnosed autism between 1988 and 1999.
The peak incidence was among 3 and 4 year olds, and 83% of cases were boys.
A study by Rutter (2005), involving a review of the relevant research literature reporting on systematic screening and focusing upon age groups for which diagnostic assessments are reliable and valid, concluded that the true incidence of autistic spectrum disorders is likely to be within the range 30-60 cases per 10,000 which represents a very large increase over the estimated 4 in 10,000 of the 1960s.
Rutter held that the increase is largely a function of improved assessment procedures and a broadening of the diagnostic criteria. However, he also acknowledged that one cannot discount the possibility that some environmental risk factor, as yet unspecified, may be operating.
The stimulus for this work by Rutter, and that of Kaye et al (op.cit), was the concern lest the rise in the incidence of autism and ASD was linked to the mumps, measles, and rubella vaccination, but it was concluded in both cases (in common with the results of other epidemiological studies) that there is no correlation between the prevalence of the MMR vaccination and the rapid increase in the numbers of children diagnosed with autism and ASD.
The stimulus for the investigation completed by Kane (2004) was also the contrast between the observed incidence of autism during many years prior to the early 1980s of 4 or 5 per 10,000 children with the more recent estimates ranging from around 1 in 500 children to 1 in 100 children. His study further explored the hypothesis that autism may be the outcome of some (genetic) propensity to the condition which becomes a reality if triggered by some environmental circumstance or event.
Hypothesised triggers have included not only the MMR vaccination but also air pollution or excessive exposure to television viewing, and Kane’s study highlighted the further possibility that pre-natal or neo-natal exposure to ambient radiofrequency radiation, which has become pervasive over the last 20 years, could be significant in the aetiology of autism and ASD.
A current position statement from the National Autistic Society recognises the rise in the numbers of children diagnosed with ASD and cites the ongoing debate whether this phenomenon can be explained in terms of heightened awareness of the symptomatology and changes in diagnostic practices, or whether there is a real increase incidence.
This statement notes the problem of comparing current with previous data on incidence, with the possibility that the prevalence of autism was under-recognised in the period prior to the early 1980s.
Whatever the outcome of this ongoing debate, the NAS cites a figure of well over 500,000 individuals in the UK who are currently affected in varying degrees of severity by autism, ASD, and Asperger Syndrome; and it is argued that the critical need is for ensuring appropriate support.
In other words, what matters is having in place appropriate procedures by which to gain an accurate diagnosis of autism and ASD, especially as converging evidence has highlighted the importance of early initiation of intervention
Early diagnosis is also important given the findings (Trute et al 2007) that a significant factor underlying the resilience of parents/carers and their coping skills is having some specific and supportive strategies by which to make best use of the time and efforts they are anxious to devote to the child.
A prolonged period of uncertainty is undesirable, but it is equally undesirable to demand of clinicians a firm diagnosis by which to make sense of the observed behavioural anomalies in the case of very young children for whom there may be competing diagnostic hypotheses. A false-positive identification is as much to be avoided as a delayed identification (or an initially false-negative identification).
Therefore, diagnostic processes are of marked significance in ensuring, as early as practicable, an understanding of the nature of the presenting symptoms and needs, and a starting point for discussions between professionals and parents about how best to support the child.
The S.E. Region (Scrip and Sersen) Diagnostic Pathway and Opinion
Survey
The small-scale study, organised through the South-East and the South Central Regional Partnerships, set out to tap the experiences and opinions of Health and Education professionals concerning diagnostic procedures. The goal was to gain increased awareness of how the diagnosis of ASD is managed across the region, and of variations in perspectives and practices, with a view to addressing any presenting differences and gaining a greater consistency of action.
Questionnaires were distributed by members of the regional groups to Health and Education practitioners.
22 questionnaires were completed and returned.
Roles of the responding
professionals
Classified under Education : Specialist teacher 9
Specialist teacher (pre-school) 1
Head of support team 1
Educational Psychologist 5
(16)
Classified under Health (PCT) : Community paediatrician 2
Clinical psychologist (CAMHS) 1
Child psychotherapist (CAMHS) 1
Speech & language therapist 2
(6)
Perceptions of who is involved in the diagnostic process
Preschool
children Primary Secondary 16+
Paediatrician 20 20 7 2
Child psychiatrist 1 7 10 5
Clinical psychologist 6 10 10 3
Educational psychologist 4 7 7 2
Speech/language therapist 17 18 10 3
Education support staff 3 6 5 3
Key worker 2 1 1 0
Nurse specialist 3 1 1 0
Other 1 3 2 0
(“Other” included references to occupational therapist or physiotherapist, specialist teacher, and child psychotherapist.)
Commentary
In one case, the clinical
psychologist was cited as being involved in the diagnostic process, albeit only
in respect of contributing information in some but not all cases.
Another respondent cited only paediatrician, clinical psychologist, and educational psychologist, as being involved in the assessment process, but went on to explain that decision-making by the paediatrician is informed by advice and evidence from a range of other professionals as well as parents.
In other words, it raises the question of what exactly is meant by “Who is involved?” since it could mean direct participation in discussions and decision-making, or the contribution of information which could be very significant for the decision-making on the part of (typically) the paediatrician.
It is logical, given the nature of the triad of core characteristics of autism and ASD, that the input of a speech and language therapist is seen as a consistent element of the diagnostic process. However, in addition to the autism marker of difficulties or anomalies in communication, the triad refers also to impaired social interaction and limited imaginative play (along with repetitive or stereotyped activities) so that it would seem equally logical for there to be some informed input in these regards, with implications for the greater input of a psychologist than appears to be typical according to current responses, and for ensured access to the observations of staff in nurseries and schools who will have direct knowledge of the child’s performance in a group setting.
This, of course, raises the further question of the extent to which the respondents all have a direct awareness of the processes and procedures that are involved in diagnostic decision-making.
A further possibility is that some professionals may only become involved after assessments have been completed ... such as a specialist teacher ... but their earlier input would seem critical in the case of a child already in a school setting and referred as a possible case of autism or ASD.
(It would also be helpful to clarify the meaning of “key worker” especially as this role could be taken by different professionals according to the age of the child, and could overlap with other categories within the list of those who are or may be involved.)
Satisfaction with the diagnostic process
The initial question simply asked, in a black versus while fashion, whether the processes are regarded as satisfactory or unsatisfactory in meeting the needs of the children themselves as well as the needs of their parents/carers, and in providing the necessary information for professionals. There was no gradation of satisfaction.
Satisfactory : 6
Unsatisfactory : 13
No view/unsure : 3
Those offering a rating of satisfactory included two specialist teachers, a head of educational support, a senior EP, a speech and language therapist, and a clinical psychologist.
Those offering an unsatisfactory rating included 5 specialist teachers, 4 educational psychologists, 2 paediatricians, a clinical psychologist, and a speech and language therapist.
Those offering no rating were all specialist teachers.
Additional comments from those giving a satisfactory rating included the proviso from the head of educational support that consistency of diagnostic processes appears lacking for children of secondary-school age.
A senior educational psychologist held that the positive rating of the current system is dependent upon ensuring that the paediatrician who has the responsibility for collating and interpreting evidence, and for making the decision about a diagnosis, has access to reports about the child’s functioning in a range of settings from the professionals involved with the child.
Similarly, the two paediatricians who expressed dissatisfaction both cited the lack of multi-disciplinary support. One regretted that the lack of input focused pressure upon the area paediatrician to make the decision; and the other cited insufficient resources
(including no clinical psychologist’s input or social services’ input both at the time of assessment and afterwards in the form of supportive intervention).
Among those not satisfied with the current diagnostic processes, the most frequently expressed concern (9 references) was about the apparent lack of consultation with, and lack of involvement of, a range of educational professionals on the part of the clinicians responsible for implementing the diagnostic process who appear to comprise, largely or solely, Health and Mental Health professionals. The absence of a truly multi-professional system was regretted.
The second most frequent concern (5 references) was about the lack of adequate staffing by which to ensure that children can be seen rapidly after the initial referral and that waiting lists can be minimised.
One of the specialist teachers expressed the concern that there may still be many children with ASD who are not identified and who, therefore, do not receive the appropriate level or style of support.
Three further comments were offered ... one noting a lack of action or advice following the diagnosis; another expressing concern that, even when not formally diagnosed with autism or ASD, some children may still have significant needs meriting supportive input for the children themselves and for their families; and the third noting the slowness of the process.
Further exploration of the basis for ratings
Discussion of the responses at
the subsequent meeting of the regional group representatives indicated the
potential usefulness of exploring further the reasons behind dissatisfaction
and of gaining more specific descriptions of the concerns underlying the
feelings expressed.
The existing responses included the common themes of inadequate staffing or of
a lack of multi-disciplinary consultation, but it was held that seeking further
information via the use of open ended questions would provide more scope for
the expression of views about perceived shortcomings and about modifications to
the diagnostic processes necessary to improve the current system.
Accordingly, the respondents were re-contacted and invited to comment further about the diagnostic pathways, particularly where unsatisfactory ratings had been given previously, and about any changes or additions that would helpfully be introduced into the diagnostic processes.
13 responses were received ... 8 from professionals in Health Authorities and 5 from Education professionals.
The respondents were invited to rate diagnostic processes on a 5-point Likert scale from “strongly agree”(A) through “neither agree nor disagree” to “strongly disagree” (E) that the current processes are satisfactory ; and the responses were as follows :
Perception of diagnostic pathway as satisfactory – pre-school cases
A B C D E
H 3 3 1 1 0
E 1 4 0 0 0
Primary school cases
H 0 5 1 2 0
E 0 1 1 2 1
Secondary school cases
H 0 0 3 3 2
E 0 0 1 0 4
16+ cases
H 0 0 3 0 5
E 0 0 1 1 3
It may be observed that, as the age group moves from pre-school, through primary and secondary school, and beyond, the degree of satisfaction in the diagnostic processes decreases markedly.
Perceived features of the procedures associated with positive ratings focused upon two basic themes :
The value of a true multi-agency involvement with the opportunity for observation and assessment in arrange of settings; and the value of a clear pathway and diagnostic system for all children, as likely already to be available for pre-school children.
With respect to responses concerning dissatisfaction with the current diagnostic pathways, the general comments were consistent in emphasising the perceived disjointing of systems as the age group of the children increased. There was a common concern that there appeared to be no clearly defined and coordinated system for school age children.
Additional comments referred to the “patchy” provision across a region, with an emphasis upon Health personnel involvement and relatively less input from Education staff; and concern about training (to avoid, for example, a situation where ASD symptoms may be less evident within the structure of a classroom).
Those comments that were specific to school age children emphasised again the
perceived lack of true multi-agency working and the perception that Health
professionals operate in relative isolation.
Further concerns were expressed about the lack of resources to back the assessments made, and about the possible lack of awareness among teaching staff about ASD with the risk of delayed identification until the pupil has become at risk of exclusion.
Where general or summative comments were offered, there was a frequent expression, once again, of the view that the diagnostic systems appear to work well for children in the early years but that the diagnostic pathway is less clear as the children get older ... and this is particularly so by the time the children reach secondary school age.
The aspiration is for a coordinated system involving multi-disciplinary liaison, and shared discussions and consultations among all concerned by which to clarify the needs and to begin the process of planning interventions by which best to support the child and family. This may already happen in some areas where there is a specific team or a defined system, but the good practice commonly observed in the case of pre-school children needs to be extended across children and young people across a much wider age range.
Summary and Discussion
It should be acknowledged from the outset that this survey was small scale, with relatively few respondents among Health or Education professionals and no certainty that their views are truly representative.
However, the consistency of the opinions expressed could be taken as a measure of the likely validity and generalisability of the perceptions, especially when set alongside comparable studies (such as that of Reed and Osborne 2003) which tapped the experiences of parents and carers in respect of communication with professionals during the diagnosis of autism, and highlighted some lack of perceived coherence in the structure and content of diagnostic procedures, concerns over the knowledge base and training of professionals, and the need for more information about support and programmes available post-diagnosis.
What is self-evident among this current set of responses is the perceived desirability of multi-sources of opinion and multi-setting observations, which, outside casework concerned with pre-school children, do not appear consistently to be a reality.
In the same vein, one can infer a sense of uncertainty about who could or should be involved.
One might even suggest that the concept of “named person” remains salient and potentially helpful for both professionals and parents/carers as a first point of contact and for the coordination and dissemination of information.
This concept may well be seen as increasingly useful in the case of children of school age where various professionals representing various agencies could be involved but it may not be clear who has the central and coordinating role.
Meanwhile, there has been much development over the years in support services, including the appointment of advisory teachers, outreach teachers, and behavioural support staff, alongside the existing roles of educational psychologist, clinical psychologist, and CAMHS’ teams ; and the process of organising all the professionals into a comprehensive Children’ Service is ongoing.
Some of the professional groupings within overall multi-disciplinary teams have identified individuals who are developing a specialism in autism and ASD; and it appears that it remains necessary to clarify the particular areas of expertise and responsibility among all the available professionals, including those deemed specialists. While uncertainty exists among both parents/carers and professionals concerning this issue, there may continue to be a perceived lack of coherence in the diagnostic and support systems, as illustrated by questions from school staff about to whom to direct an expression of concern ... to educational psychologist, community paediatrician, advisory teacher, outreach teacher, CAMHS, clinical psychologist, specialist speech and language therapist ... and about the particular contribution of those professionals.
Another issue emerging from the responses concerns the different expectations that may be applied to diagnostic processes.
Some references were noted in this survey (in common with other survey data) to the lack of support available for the children diagnosed with autism or ASD. This might be thought a little unfair upon those involved specifically in the assessment and diagnosis of the children in question who may not have a role in allocating resources.
However, given the need to follow diagnosis as rapidly as possible with the provision of intervention for the children (to which parents can contribute), it would seem logical to build into the system a shared consultation for parents/carers and professionals which is both summative in collating evidence and highlighting needs, and formative in beginning the process of selecting strategies and monitoring performance.
The implication is that such a consultation should involve professionals from Health, Education, and Social Services, and cover both the conclusions from the various assessments and the sharing of implications for how best to organise initial intervention. Existing assessment data could provide a baseline against which to compare follow-up scores/ratings, thus helping to determine the effectiveness of the intervention.
In conclusion, it is stressed again that small number of participants in this current survey does not permit firm conclusions.
However, the general “direction” of the responses shows a consistency of concerns, and could be taken as justification for a wider and larger scale survey of perceptions among both professionals and parents/carers by which more firmly to highlight both good practice and inefficiencies observed in diagnostic procedures.
* * * * * *
M.J.Connor
December 2007
REFERENCES
Asperger H. 1944 Die Autistischen Psychopathen im Kindesalter. (Autistic Psychopathy in Childhood) Translated and annotated by Frith U (1991) in Autism and Asperger Syndrome. Cambridge : Cambridge University Press
Barbaresi W., Katusic S., Colligan R., Weaver A., and Jacobsen S. 2005 The incidence of autism in Olmsted County 1976-1997 : results from a population-based study. Archives of Pediatrics and Adolescent Medicine 159(1) 37-44
Kane R. 2004 A possible association between foetal/neonatal exposure to radiofrequency electromagnetic radiation and the increased incidence of autistic spectrum disorders. Medical Hypotheses 62 195-197
Kanner L. 1943 Autistic disturbance of affective contact. Nervous Child 2 217-250
Kaye J., Melero-Montes M., and Jick H. 2001 MMR vaccine and the incidence of autism recorded by general practitioners. British Medical Journal 322 460-463
Reed P. and Osborne L. 2003 Caregivers’ perceptions of communication with professionals during the diagnosis of autism. Report prepared under the auspices of the SE Regional Group. Kingston upon Thames : SERSEN
Rutter M. 2005 Incidence of autistic spectrum disorder : changes over time and their meaning. Acta Paediatrica 94(1) 2-15
Shattuck P. 2006 The contribution of diagnostic substitution to the growing administrative prevalence of autism in US special education. Pediatrics 117(4) 1028-1037
Trute B., Hiebert-Murphy D., and Levine K. 2007 Parental appraisal of the family impact of childhood developmental disability. Journal of Intellectual and Developmental Disability 32(1) 1-9
Wing L. 1988 The continuum of autistic characteristics. In E. Schopler and G. Mesibov (Eds) Diagnosis and Assessment in Autism. New York : Plenum Press
© Mike Connor 2007.
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