Sistema de Gestión de la Seguridad y Salud Ocupacional:

Question

What outcomes is it important to assess when monitoring the progress and outcomes for children with ASD up to the age of 6 years?

Methods

A Discussion Day was held in London on 14 February 2014. Twenty-five participants were invited: four parents of children with autism; three young people with autism, two of those with staff who support them in education; eight speech-and-language therapists, occupational therapists, paediatricians or psychologists; and two researchers working with children with autism; six MeASURe project researchers who work in health or education services also attended.

As one activity, groups of similar background carried out a further Q-sort to rate the importance of constructs, and ascertain similarities or differences between what parents, professionals and researchers consider most important. The set of 21 constructs for the parents and for the young people was drawn primarily from those reported as most often assessed by the early years professionals in the survey. The set

TABLE 2 Difference between professionals and parents on their top 10 constructs for measurement of progress

or outcome

Professionals: areas regularly measured Parents: important areas to measure (rank)

90% social interaction with children Happiness (1)

84% play skills Anxiety, unusual fears (2)

79% attention Positive views of self (self-esteem) (3) 76% amount of speech Distress (4)

75% understanding of language Non-verbal ability (5)

73% expressive communication skills Relationships with brothers and sisters (6) 72% pretend play Parent stress (7)

70% fine motor skills Fighting, hitting others (8) 68% participation in activities Sleep problems (9)

for the professionals and the researchers included the 10 rated as most important by the parent groups, and the 10 most often measured by professionals as reported in the survey. Both sets were completed with added constructs to represent a wide span of subdomains.

We hypothesised that:

l The young people and parents might well agree on the top 10 constructs.

l The professionals might also agree with parents, even although what they actually measure is not in accordance.

l The researchers might choose a different set (more based on intervention elements, symptoms and everyday function).

l We had no expectation about parents_’views on the order of importance of what professionals tend to measure.

Results

Adverse weather conditions and train cancellations prevented several participants joining the Discussion Day, including two young people on the autism spectrum. However, four groups of four people each considered the constructs.

One young adult on the autism spectrum joined the parent group; his/her ranking showed a high level of agreement with the averaged ranking of constructs undertaken previously by parent groups (Spearman rank correlationrs=0.618). Fine motor skills were rated higher than previously because of the experiences

of the young adult as a child.‘Friendships’was rated higher than previously, reflecting on the precursor skills needed by the child early on that will lead later to being able to make friendships. Aspects that affect the emotional state of the child, including sensory processing, continued to be rated highly.‘Participates in mainstream activities_’was rated low: the group thought_‘this means the ASD child has to adapt to the mainstream world rather than‘mainstream’adapting/understanding/respecting ASD needs’. They also gave a low rating to_‘not cooperating, throwing, spitting, won_’t sit (challenging behaviour)_’, as they considered it the role of adults (parents, education and care staff) to try to make the environment right for the child so his/her autism was less‘disabling’.

The two multidisciplinary groups of health and education professionals, and the group of ASD researchers, had low agreement with the averaged ratings of the parent groups (rs=–0.268, 0.131 and–0.063,

respectively). The health and education professionals commented that they measure what they can (in the setting, given the available tools) and what they traditionally have done. They emphasised as‘important’ what they see as most urgent to try to change, such as challenging behaviour and communication skills. In contrast, although acknowledging the importance of the construct‘positive views of self (self-esteem)’, they gave it a lower rating because of the developmental stage of children up to 6 years; researchers similarly rated self-esteem as low because of the lack of a suitable measurement tool. The researchers had rated highest‘not cooperating, throwing, spitting, won’t sit (challenging behaviour)’on the basis of its impact on others and on the child’s experience. Both groups of health and education professionals identified a range of additional constructs that they would consider it important to measure, including communicative competence, problems with food, functional adaptive behaviour, etc. They also mentioned the importance of identifying the skill set of support staff, and parent confidence in managing their child’s needs and behaviours.

When all groups came together, the discussion highlighted differences in perspective, in summary a‘social’ model and a_‘medical_’model. The parents and the young adult on the autism spectrum argued that it is important to focus on what childrencando, to see autism as a‘difference’rather than always use a ‘deficit’model, and to focus more on how to enable children through improving their environments. Parents were encouraged that the clinicians had mentioned including assessment of the skills of care and education staff. The clinicians reflected that their approach to assessment and intervention is based on a more‘medical’model: early identification of specific impairments, treatment, prevention of secondary

impairment, and so on. The measurement of outcomes and tools available reflect this framework, with an emphasis on problems and deficits. For the researchers, the model of intervention and outcome assessment was also primarily embedded in a‘deficit’model of autism, with an emphasis on treating and measuring core features of autism. Research outcomes such as helping parents manage better and understand more are seen as‘soft outcomes’, and not given the same importance as changing children’s characteristics. A certain contradiction was pointed out between the recognition that publicly funded research must now be informed by good patient and public involvement, and yet the priority research questions, commissioning briefs and frameworks for judgement of what is good science do not necessarily value the social model of understanding a condition such as ASD.