There is a growing body of evidence that the prevalence of autism in girls is much higher than previously recognised, and that autistic girls frequently fly ‘under the radar’. Recent research has revealed a ‘diagnostic gender bias’ (Loomes, Hull and Mandy, 2017), with girls less likely to be diagnosed as autistic than boys when presenting with the same symptoms (Dworzynski, Ronald, Bolton and Happé, 2012b), when they are cognitively able, have superficially better communication skills and when they mask their difficulties (Gould and Ashton-Smith, 2011). Moreover, they are often diagnosed later than boys (Idring et al), often only after mental health issues become the more obvious condition in adolescence, and thereby do not have access to early support. These studies are important because they demonstrate the importance of making suitable equitable provision for autistic girls, as well as autistic boys.

There is some evidence that a growing number of adolescent autistic girls are dropping out of education, missing out on a fundamental human right. This right is provided for internationally by the UNCRC, and in England is governed by the Education Act 1996. This made parents legally responsible for ensuring their children receive an education, and Local Authorities (LA’s) for ensuring there is sufficient provision. However, there is a tension here when parents and schools are not in agreement about a child’s needs and the type of provision required. This is often the case with autistic girls, who appear to develop coping mechanisms that hide their problems at school (Moyse, 2013), such as becoming quiet observers and social chameleons, and by internalising frustrations and anxiety until they get home (Solomon et al, 2012).  This sometimes leads to stark differences in the perspectives of parents and schools (Moyse and Porter, 2014), which may result in delays in referrals for assessment and to implementation of support. The lack of sufficient, appropriate educational support for autistic girls may contribute to their absence from education.

There is limited understanding to date of gender differences in the autism referral and assessment process in some parts of England, however, and without accurate data the scale of this infringement of human rights is unclear. A lack of data also impedes the strategic planning of local services. It is important therefore to examine what data is collected during autism assessments, what data is omitted, and what is being reported as a result. This data is used to construct a view of the world, which in turn informs policy and provision. Omitted data can serve to exclude autistic girls from this construction of society and from policy decisions that could affect them.

This study examines data collected in one region of England, to identify trends in the assessment of autism in boys and girls. It is underpinned by a socio-cultural approach to consider the ways in which assessment and identification processes mediate understandings of disability and differing responses to support and intervention. The absence of data has its own meaning (Porter, 2016). The objectives of the study were to interrogate historical secondary data, comparing referral and diagnostic data for girls and boys, and to explore the pathways of girls by investigating in depth the sequence of events leading to diagnosis.

This study is significant given that there is a historical absence of girls from the official stories of autism and their exclusion from school. This in turn has impacted on their access to appropriate educational provision. The second part of the study (not reported here) will add further to this understanding through the collection of life stories which will illustrate further the impact of this shortfall in provision.

This phase of the study involved two stages. First, statistical data from the autism pathway of a National Health Service (NHS) Trust in SE England were interrogated to test hypotheses relating to gender by reference to locality, referral and outcomes, and to look at trends over time. This was a population sample of all children and young people referred to this Trust for an autism assessment from the data-set covering 2012-2017 (n=5421), with the archive data extracted by an analyst at the Trust and anonymised at source. Descriptive statistics were used to consider age at referral, at assessment and at diagnosis, by gender. This regional data was then compared with the national picture. Additional, less accessible data were interrogated from 2016, manually extracted by an assistant psychologist and anonymised at source. This enabled consideration of whether a school observation was part of the assessment process, whether the young person was, or had been, on a different pathway, alternative diagnoses, and previous referrals. The second stage of the secondary data evaluation involved the detailed examination of a purposive sample of the records of ten autistic girls, with informed consent. Each girl’s record was given a pseudonym at the beginning of the data retrieval, as were any identifiers within the girl’s record such as the school attended. The purpose was to look in detail at a child’s route to diagnosis, using Tiki Toki software to map out timelines and explore individual pathways. This included looking at the Children’s Communication Checklists from the school and the parents, the Social Communication Questionnaire completed by parents, the observation notes from school (if applicable), the screening questionnaire from the parents, and the developmental history and autism assessments completed by the clinicians, plus identification of any previous referrals and diagnoses. The data were examined for evidence of the girls’ voices along the pathway, and of how they constructed their experiences. In addition, evidence was sought of each girl’s attendance and connection to school, and whether the NHS records identified instances of exclusion or self-exclusion. Findings from this stage of the research were used to inform and guide the later collection of primary data.

The study identifies differences in the assessment of autism in boys and girls, which may contribute to absenteeism of autistic girls from mainstream Secondary schools. The detailed examination of official records reveals that pathways to diagnosis can be long and protracted, sometimes requiring more than one referral. It shows the extent of the girls’ voices in the pathways to their diagnosis, in comparison with those of parents, teachers and clinicians. The findings also reveal inconsistencies in the collection of data with implications for the way that data is collected, what triggers the recording of data and who provides that information. Taken together with the detailed examination of the sub-sample of records, the findings also reveal gaps that have implications for the provision of individual support as well as the wider strategic planning of provision.

Dworzynski, K., Ronald, A., Bolton, P., & Happé, F. (2012). How different are girls and boys above and below the diagnostic threshold for autism spectrum disorders? Journal of the American Academy of Child & Adolescent Psychiatry, 51(8), 788-797. Gould, J., & Ashton-Smith, J. (2011). Missed diagnosis or misdiagnosis? Girls and women on the autistic spectrum. GAP, 12(1), 34-41. Idring, S., Rai, D., Dal, H., Dalman, C., Sturm, H., Zander, E., . . . Magnusson, C. (2012). Autism spectrum disorders in the Stockholm Youth Cohort: design, prevalence and validity. PloS one, 7(7), e41280. doi:10.1371/journal.pone.0041280 Loomes, R., Hull, L., & Mandy, W. P. L. (2017). What is the Male-to-Female Ratio in Autism Spectrum Disorder? A Systematic Review and Meta-Analysis. Journal of the American Academy of Child & Adolescent Psychiatry. doi:10.1016/j.jaac.2017.03.013 Moyse, R. (2013). The Hidden Curriculum and its Impact on Inclusion, as Experienced by Girls with Asperger’s Syndrome or High Functioning Autism. MA Dissertation. Moyse, R., & Porter, J. (2014). The experience of the hidden curriculum for autistic girls at mainstream primary schools. European Journal of Special Needs Education, 30(2), 187-201. doi:10.1080/08856257.2014.986915 Porter, J. (2016). Time for justice: safeguarding the rights of disabled children. Disability & Society, 31(8), 997-1012. doi:10.1080/09687599.2016.1223605 Solomon, M., Miller, M., Taylor, S. L., Hinshaw, S. P., & Carter, C. S. (2012). Autism Symptoms and Internalizing Psychopathology in Girls and Boys with Autism Spectrum Disorders. Journal of Autism and Developmental Disorders, 42(1), 48-59. doi:10.1007/s10803-011-1215-z