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The ‘fight’ for inclusion: the mainstream school experiences of autistic children and their families

By Jo Billington, Doctoral Researcher, Centre for Autism

Background

According to the Department for Education, 72% of autistic children in the English state school system are educated in mainstream schools. Of these children, two-thirds are expected by their local authorities to be able to access the mainstream [1] academic curriculum without the need for statutory support in the form of an Education Health and Care Plan. However, the latest available Government statistics below show that, on average, autistic children do not achieve the same levels of academic attainment as their non-autistic peers [2,3] KS2 SATS scores 2017. Percentage of pupils achieving expected standards in reading, writing and mathematics:

General school population: 70%

Autistic school population: 25%

GSCE results 2017

Percentage of pupils achieving 5 GCSEs grade 4 or above:

General school population: 63.9%

Autistic school population: 32.5%

Of course, test results are a singular (and not entirely reliable) measure of educational attainment, but looking at the research evidence for the possible reasons for this disparity reveals an unsettling picture. It also gives us some insight into the challenges many families have in attempting to secure a suitable education for their autistic child.

Firstly, autistic children and young people are considerably more likely than their non-autistic peers to be excluded from school, and the official rates of fixed term and permanent exclusions of autistic children have increased by 60% since 2013 [4,5]. But these official figures are just the tip of the iceberg. Charities such as the National Autistic Society and Ambitious about Autism have expressed concerns about the rise of unofficial exclusions. These are exclusions that do not feature in official statistics because they go unrecorded, and they include being sent home to ‘cool off’, being excluded from school trips, and being placed on part time timetables [6,7]

There is also an increased awareness of the growing number of autistic children who are not in school at all. While there is very little published research on the subject, anecdotal evidence suggests that a lack of appropriate individualised support can result in some autistic children finding school attendance impossible, whereas others have been encouraged to leave by schools who feel unable, or even unwilling, to meet the child’s needs. Official statistics are scant but the Children’s Commissioner has reported that “in hundreds of mainstream schools, children with special educational needs are being illegally excluded because the school does not feel able to cope” [8].

For those children who are able to access school, their experience can be a difficult one. In particular, bullying and victimisation of autistic children is a significant problem. A number of studies have shown rates of bullying upwards of 70%, with as many as a third of autistic children experiencing victimisation two or more times a week [9,10]. Even when bullying may not be a factor, being autistic in a mainstream school can be very challenging. The mainstream social world can be confusing and exhausting for an autistic person. An autistic child needs to learn not only how to meet the academic demands of school, but also how to decipher the unwritten rules of social conduct within the school environment, often with little or no support and guidance. Add to this the chaotic and overwhelming sensory aspects of school, and it becomes clear why many autistic children struggle.

We know that mental health difficulties are very common among autistic children. Studies have found that 70% of autistic children meet the clinical diagnostic threshold for at least one mental health condition with social anxiety disorders being the most prevalent [11,12]. Given the social demands of a typical school day, this has clear implications for autistic children and young people. However, despite these alarming figures, autistic young people and their families struggle to access mental health services and the minority that do report long delays and a lack of appropriate treatment that takes their autism into consideration [13].

Of course, these challenges don’t end once compulsory education is over. The long term impact of these combined factors extends beyond school into adulthood and can be devastating. Autistic young people are less likely to enter higher education and are less likely to find sustained competitive employment. They are also more likely to report low levels of life satisfaction and, arguably most troubling of all, recent research has revealed that suicide is a leading cause of premature death in autistic adults [14]

Parental experiences: ‘the fight’

Against this backdrop, it’s unsurprising that many parents describe their experiences of raising their autistic child as a fight. And the fight can start early in the child’s life. A study into the experiences of the autism diagnostic process found that while 84% of parents noticed differences in their child before the age of 5 years, most experienced a delay of between 3 and 4 years from first contacting a health professional to receiving a formal diagnosis of autism for their child. Furthermore, over a third of families received no offers of help or post-diagnosis support at all [15].

In terms of school support, the All Party Parliamentary Group report, Autism and Education in England [16], showed that 70% of parents felt that support was not put in place quickly enough for their autistic child and 42% of parents were refused an assessment of their child’s special educational needs the first time it was requested. Government statistics show increasing numbers of families are having to resort to legal means in order to secure educational support for their children. The emotional and financial cost of such action to families is significant and studies consistently show that parents of autistic children experience greater levels of stress than any other group [17]

Parents also face an increasingly hostile and judgemental societal view of developmental differences in children. Media reports of diagnoses of neurodevelopmental conditions such as autism and ADHD being an excuse for bad parenting are commonplace. Prominent public figures such as the head of OFSTED, Amanda Spielman, have publicly criticised the use of medication in developmental conditions and have added support to the widespread belief that families are solely responsible for the behavioural difficulties their children may have at school [18]. These views are in direct opposition to the clinical guidelines on the best ways to support young people with neurodevelopmental conditions, but still the stigma and misinformation persist.

For some parents, the fight has become part of their personal identity and this can be seen on social media with the rise of terms such as "#proudtobeadifficultparent" and “autism warrior mum/dad”. It is possible that these terms enable a form of kinship and sense of solidarity and community among parents of children with autism and other SEND. They are a way of acknowledging the significant daily challenges faced by some families and can help to reduce the feelings of isolation and frustration.

It is clear that more needs to be done on an individual and societal level to support the needs of autistic young people and their families. The level of challenge and hardship experienced by many autistic children and their families while trying to secure the fundamental right to an education is nothing short of a scandal. More funding for research and training is required in order to bring about positive changes in health, education and social care. But more important than funding is the need to bring about changes in mindset. As a society, it is essential that we develop a greater understanding and acceptance of neurodevelopmental diversity. We need to value difference and look beyond the constraints of societal and educational norms so that autistic children and their families do not just survive but thrive.

[1] Department for Education, (2018). Special educational needs in England: January 2018 (https://www.gov.uk/government/statistics/special-educational-needs-in-england-january-2018)

[2] Department for Education, (2017). National curriculum assessments: key stage 2, 2017 (revised) (https://www.gov.uk/government/statistics/national-curriculum-assessments-key-stage-2-2017-revised)

[3] Department for Education, (2018). Revised GCSE and equivalent results in England: 2016 to 2017 (https://www.gov.uk/government/statistics/revised-gcse-and-equivalent-results-in-england-2016-to-2017)

[4] Department for Education, (2016). SEN absences and exclusions: additional analysis (https://www.gov.uk/government/publications/sen-absences-and-exclusions-additional-analysis)

[5] Department for Education, (2017) Permanent and fixed-period exclusions in England: 2015 to 2016 (https://www.gov.uk/government/statistics/permanent-and-fixed-period-exclusions-in-england-2015-to-2016)

[6] (https://www.ambitiousaboutautism.org.uk/understanding-autism/exclusions-of-pupils-with-autism-rocket-in-england-new-data-shows)

[7] (http://www.autism.org.uk/about/in-education/exclusion/grey-areas-england.aspx)

[8] Office of the Children’s Commissioner for England (OCC) (2017). Falling through the Gaps in Education. London: Office of the Children’s Commissioner for England.

[9] Cappadocia, M. C., Weiss, J. A., & Pepler, D. (2012). Bullying experiences among children and youth with autism spectrum disorders. Journal of autism and developmental disorders, 42(2), 266-277.

[10] Fisher, M. H., & Taylor, J. L. (2016). Let’s talk about it: Peer victimization experiences as reported by adolescents with autism spectrum disorder. Autism, 20(4), 402-411.

[11] Leyfer, O. T., Folstein, S. E., Bacalman, S., Davis, N. O., Dinh, E., Morgan, J., . . . Lainhart, J. E. (2006). Comorbid psychiatric disorders in children with autism: Interview development and rates of disorders. Journal of autism and developmental disorders, 36(7), 849-861

[12] Simonoff, E., Pickles, A., Charman, T., Chandler, S., Loucas, T., & Baird, G. (2008). Psychiatric disorders in children with autism spectrum disorders: Prevalence, comorbidity, and associated factors in a population-derived sample. Journal of the American Academy of Child & Adolescent Psychiatry, 47(8), 921-929

[13] Crane, L., Adams, F., Harper, G., Welch, J., & Pellicano, E. (2019). ‘Something needs to change’: Mental health experiences of young autistic adults in England. Autism, 23(2), 477-493.

[14] Hirvikoski, T., Mittendorfer-Rutz, E., Boman, M., Larsson, H., Lichtenstein, P., & Bölte, S. (2016). Premature mortality in autism spectrum disorder. The British Journal of Psychiatry, 208(3), 232-238.

[15] Crane, L., Chester, J. W., Goddard, L., Henry, L. A., & Hill, E. (2016). Experiences of autism diagnosis: A survey of over 1000 parents in the United Kingdom. Autism, 20(2), 153-162.

[16] http://www.autism.org.uk/get-involved/campaign/appga/highlights.aspx

[17] Hayes, S., & Watson, S. (2013). The impact of parenting stress: A meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism & Developmental Disorders, 43(3), 629-642.

[18] https://www.thetimes.co.uk/article/use-of-chemical-cosh-drugs-on-children-doubles-in-a-decade-2h90r9xgf

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