PA0049

Written evidence submitted by University of Portsmouth

Autistic children and young people in schools experiencing increased levels of exclusion and subsequent absence

Alice Leyman:

I am an Accredited Childcare Practitioner & PhD Researcher working with the University of Portsmouth, and the following findings have been collected as part of my doctoral research into the exclusion of autistic children and young people.  As a Parent to two autistic children, I also have personal experience of persistent school absence, home schooling and working with multiple agencies, and the impact this can have on the whole family.  I am working with a small group of children and their families to generate suggestions for reforms particularly with regards to schooling and for support for families whose children are at home.

Summary

Autistic individual's social and communication challenges and internal processing of external input may hinder their engagement and understanding of society. This may be particularly aggravated by the physical geography and environmental elements of certain places and specific spaces .  For example, urban environments, leisure establishments, and educational settings may be particularly stimulating and overwhelmingly for autistic children and young people as high levels of sensory input including elevated noise, artificial light, volume of people, and negative environmental factors including smell, taste, touch, that could confuse and distress (Preece 2002).   These spaces could constitute a barrage on their senses enough to cause physical pain and distress, with participants indeed stating how being around people made them feel physically uncomfortable. 

A doctoral qualitative study conducted pre, during and post pandemic explored experiences of exclusion for autistic (both medically and self-diagnosed) children and young people and found that school was a significant cause of discomfort and stress for a variety of reasons, and consequently students were persistently absent.  Parent and carer views were collected via a questionnaire (online and paper form) and follow-up email exchanges with the researcher.  Autistic children and young people aged 11-16 were invited to initially complete a no/low-contact online survey with their thoughts and a subsequent interview was offered for those who felt comfortable to do so.  If they preferred participants could record their views and send digitally or offer their own words in the form of free writing or notes.

When asked what their least favourite place to be was, all participants and most of their parents stated ‘school’, together with other similarly high stimulating environments.  When explored further, school environments together with lack of understanding and awareness of staff and other pupils were the main contributors to autistic students wishing to remain at home or were required to stay at home due to anxiety and related physical conditions associated with being in such a challenging environment. Participants were also asked to provide their own thoughts as to how schools and other environments could be more inclusive to encourage attendance, with information provided below.

Findings

School was mentioned frequently by parents and autistic participants as a difficult place to be for various reasons, including the level of sensory input and number of other people within the environment, with one parent stating that school has been ‘the most damaging part’ of their journey for support.  The main themes regarding challenges at school and subsequent exclusionary experiences were lack of support, overwhelming environmental factors, the presence of unstructured and therefore unpredictable periods of time such as lunch and break times, and issues with friends and related social behaviour expectations.  Additionally, accounts detailed bullying and negative experiences regarding being ‘different’ (see Table 1.). 

A combination of environmental factors combined with lack of support, lack of understanding of autism, and the students’ specific needs, created an impossible place for the young people to be therefore, and parents had no choice but to keep their child(ren) at home.  With consistent reports of deliberately avoiding places and spaces that would cause stress for their children, including persistent absence from school, with a ‘one size fits all’ approach of school totally inappropriate for their child’s needs. 

Lack of support, lack of structure, lack of understanding

Parents detailed how school was their children’s ‘least favourite place to be’ and was ‘always a struggle’ with little or no extracurricular activity taken part in.  Masking behaviours (see below) compounded this negative experience and increased the possibility of exhaustion and illness due to stress.    As such, school absence was an issue (often due to stress-induced ill health) with some children missing lessons regularly. One mother detailed how the lack of support coupled with masking behaviour resulted in absence and reduced access to their education, with their child only accessing two lessons a week.  Extra pressures such as exams only increased the stress levels of autistic participants and intensified any related challenges.  Indeed increased academisation and a lack of implementation of social model style support for students due to the need to adapt to individual requirements,  increases the potential for a neurotypical bias environment to continue, making a universal autism friendly design less likely (Milton, Martin, & Melham, 2016).

Parents discussed how their children were not being supported appropriately, with subjects ‘not explained to them in a way that they can understand’ which created a negative and difficult environment that was confusing and ‘unknown’ particularly with the number of transitions from class to unstructured break times and unpredictable changes such as substitute teachers covering lessons.    Indeed, parents struggling to gain adequate support have reported significant increases in psychological distress to their children due to inclusion policies that are poorly implemented (Beardon, 2017).  This included a lack of education and awareness of ‘masking’ in autistic children and how to spot and support such stress-related behaviours.

Masking behaviour or ‘camouflaging’ is an unconscious strategy that all human beings develop over time in order to make connections with those around them, however for autistic children and young people, masking can be detrimental to their mental health and wellbeing (Bradley et al., 2021; Hull et al., 2019).  This is because masking for autistic individuals can be all-consuming, disguising their true authentic selves out of fear of judgement and rejection.  Autistic children and young people may become extremely adept at successfully hiding their traits, however, this level of effort and sustained need to camouflage constantly can be devastating on energy levels and physical health, with some not revealing their struggles until they are exhausted. Studies have shown that individuals with disabilities do make concerted efforts to demonstrate their abilities and minimise any effects of their impairments (Langørgen & Magnus, 2018) but disguising perceived as ‘abnormal’ personality traits is complex and personal to the individual and can be extremely detrimental to mental health and / or could add further pressure to strained families and particular family members.  Masking was not always successful and / or could lead to more extreme types of behaviour in autistic individuals.  The need therefore for staff to be educated and aware of these coping mechanisms in their students is extremely important.

Children were missing school so as to not have to endure the social parts of the school day.  One participant detailed how they disliked ‘free study periods when they have little structure to their time’.  Unstructured and often socially enforced periods like lunch and break times were very stressful  for autistic students and they were not benefiting from their purpose as a break and relief from lessons. Indeed,  the lack of structured times during the school day appeared to be the most challenging for autistic participants, particularly periods of time that were required to be spent within public or social areas like a lunch canteen / space that were likely to also be ‘sensory heavy’ with elevated noise, smells and volume of students.  Play spaces within schools were challenging further due to the expectation of certain social behaviours and perceived  levels of conformity.  To be different was to be vulnerable and ‘a target for bullies’.

This was not to say that the classroom environment was easier for them.  Although participants explained that classroom time was mainly structured and they had the opportunity to ‘lose themselves in the work’, there was always the ‘threat’ of substitute teachers who would often be unaware of their needs. One participant detailed how, as has been illustrated above, not one but multiple factors, including the physical environment, coupled with negative relationships with other students contributed to an acutely distressing experience, which was anything but conducive to effective learning.

Autistic children and young people particularly in mainstream school are subjected to a ‘social skills curriculum in addition to the national curriculum’ (Woods, 2017, pp1092) Support sought and gained is often monetary and used for other needs of schools as a whole, with little or no consideration for the individual needs of the student.  Most participants in this study have an Educational Health Care Place (EHC Plan) yet still struggle.  High numbers of EHC plans particularly for autistic pupils in the UK education system illustrate how there is still a need for ‘bolt-on’ support for anyone differing from the (neurotypical) norm (Milton, Martin, & Melham, 2016), with no inclusion of neurodiverse considerations or adaptations within the mainstream operations of education. 

Participants and their parents offered many ideas for adaptions to the education system so as to accommodate those with additional needs, with some ideas felt would benefit all children in school to ‘make school a better place for them with their needs’. These included ‘social help lessons’ for both neurodiverse and neurotypical students to help them understand each other better, the need for consistency with teachers, and more student input on preferences like clubs and out of school activities.  Many participants spoke about the hope for smaller classes, with a focus on different types of learning styles (and support for these without it being ‘too obvious’), a ‘less rushed’ environment, and the possibly of having an intermediate school between primary and secondary.  One parent commented the need for ‘flexibility, better understanding of autism and mental health, and a willingness to accept that one size doesn’t have to fit all (even if it’s how things are normally done) would be hugely helpful in mainstream school’ (Mother to two autistic children). Furthermore, parents detailed how communication was often frustrating and disjointed, and stated the need for ‘better education for school staff and a willingness to trust and really listen to parents’.

The complex combination of outwardly (often) socially unacceptable behavioural responses to internal anxiety, together with largely hidden, and often deliberately masked, internal (unseen and not considered) challenges to social interaction comprehension, plus the variation of autism as a spectrum neurodiversity makes for an intense and complicated experience for the individual, and their families, which will be highly personal and individualised.  Consequently, the need to facilitate their input in any research, particularly such an individual experience as school attendance, and subsequent support is arguably the only way to truly appreciate their perspective and life experiences.  To understand the factors that challenge those in society and cause subsequent exclusion, one needs to study the interaction between the two (Sӧder, quoted in Gustavssn, 2004).  In terms of autism and education, there is still, according to autistic children and young people, and their parents, much more work to do.

References

Beardon, L. (2017), Luke Beardon: Perspectives on Autism, Online Blog, 17 March 2017 https://blogs.shu.ac.uk/autism/2017/03/

Bradley, L., Shaw, R., Baron-Cohen, S., & Cassidy, S. (2021) Autistic Adults' Experiences of Camouflaging and Its Perceived Impact on Mental Health., Autism in Adulthood, 3(4), 320-329

Gustavsson, A., 2004. The role of theory in disability research ‐springboard or strait‐jacket?. Scandinavian Journal of Disability Research, 6(1), 55–70

Hull, L., Mandy, W., Lai M.C., Baron-Cohen, S., Allison, C.,. Smith, P., & Petrides, K.V. (2019) Development and Validation of the Camouflaging Autistic Traits Questionnaire (CAT-Q). J Autism Dev Disord. 49(3), 819-833

Langørgen, E., & Magnus, E. (2018) ‘We are just ordinary people working hard to reach our goals!’ Disabled students participation in Norwegian higher education, Disability & Society, 33(4), 598-617

Milton, D., Martin, M., & Melham, P. (2016) Beyond Reasonable Adjustment; Autistic-friendly Spaces and Universal Design, Autism and Intellectual Disabilities in Adults, 1, 81-86

Preece, D. (2002) Consultation with Children with Autism Spectrum Disorders about their experience of short-term residential care. British Journal of Learning Disabilities, 30, 97-104

Woods, R. (2017) Exploring how the social model of disability can be re-invigorated for autism: in response to Jonathan Levitt, Disability & Society, 32(7), 1090-1095

January 2023


PA0049

Table 1. Factors Contributing to Exclusion in School Settings  © Leyman

Identified Exclusionary Factor

Additional Detail

Supporting Quote

High sensory stimuli

Noise, sound, smell, proximity, light, uniform sensitivities

‘My maths classroom, its stressful environment and I don’t like the people, its cramped and gets very hot easily’ W201

‘School is too noisy; I need time out spaces’ SC06b

Environmental factors

Size of classrooms, number of students, size of recreational space, litter, maintenance of school grounds, routine discrepancies

Their least favourite place would be school – particularly during free study periods when she has little structure to her time which she finds very stressful’ W106M

‘Their least favourite place is probably school at the moment. He’s finding mocks very stressful and is struggling with his friendship group’ W106T

Everything is too rushed’ SC06c

Lack of / breakdown in communication between school, parents and outside agencies

Incl. CAMHs, Local Authorities

‘Everything has felt like a battle because school don’t actually ‘see’ what I’m telling them is happening W201

I found that school were not only unhelpful in their contribution to the diagnostic process, but seemed actually obstructive by reporting that they weren’t seeing any problemsW106

The default seems to be to believe what they see without question (or any real understanding)SC06

CAMHS were just really terrible at sharing informationW111

Lack of input from the student as to their own needs and preferences

 

‘She doesn’t enjoy school as she doesn’t understand many subjects that don’t seem to be explained to her in such a way that she can work’ SC01a

He wasn’t included in this discussion, and their solution to his problems would have been disastrous in terms of his loss of social support, routine and structureW106

Lack of bespoke support for student’s needs

 

‘I had not been there a while and it was weird as it was not a part of my routine’ W201

‘School is a struggle for her always.  She is not involved in any outside activities’ SC01b

I need more help explaining things because sometimes it doesn’t make sense straightaway W111

‘One size fits all’ approach to curriculum and learning

EHCP as ‘bolt on’

Lack of inclusive learning approaches

‘The majority of my difficulties stem from misunderstandings related to how well the kids can mask their struggles and anxieties at schoolW106

Lack of support for related comorbidities such as anxiety and stress

 

‘Their resulting difficulty with attendance, led school to tell me they wouldn’t pass their exams and ‘strongly advise’ that they leave and just focus on his mental healthW102

‘Things have to be unbearable before you know he is struggling.’ W106M

‘[the teacher] told me she’d seen him smiling and chatting with his friends the previous day, as if this meant he wasn’t really anxious.W106T

Lack of understanding of autism

Incl. support and understanding of masking

‘She recently had a breakdown at school due to masking and lack of required support…she is only accessing 2 in school lessons a week’ SC03

They will mask any worry or discomfort extremely well and are friendly, very polite and super compliant at school or other social activities.  W106T

Negative and inaccurate terminology used in documents and communication

 

 

‘it’s mum worries’, ‘my friend has autism and he’s nothing like him’, ‘my son has autism and he’s much worse’ (from the SENCO), ‘I’m not picking up any anxiety’ W103