Kat Williams provides a stark insight into the reasons for non-attendance and what is needed to combat this issue.
Numerous issues appear to impact autistic people and their families at a higher rate than their non-autistic peers, including trauma, school ‘refusal’, and not meeting academic potential. When discussing these matters with our stakeholders, a recurring theme was that while these matters are looked at separately, the intersectionality of the issues is often not considered, and that it’s possible that school ‘refusal’ is a direct result of school trauma. We conducted a survey to ascertain if there was any link, and to provide an opportunity for autistic people and their parent/carers to talk about why they/their child was unable to attend school.
Throughout the remainder of this article, I will refer to school ‘non-attendance’ rather than ‘refusal’. Most respondents indicate that the term ‘refusal’ suggests that they are wilfully not attending rather than there being an accessibility issue.
Language is important, particularly in childhood. The language used around – and directed at – children stays with them and can contribute to either building or breaking down their self-esteem. Language which apportions blame to the autistic child and their parent/ carer not only damages their wellbeing, but also removes responsibility from schools/professionals in making schools accessible.
No questions were compulsory, but on average each received 245 responses: 25 autistic people, and 224 parent/carers. All respondents either had periods of non-attendance themselves (autistic respondents) or have an autistic child who had periods of non-attendance. Most were in mainstream education prior to non-attendance. Their responses highlight a number of key issues which, if correctly addressed, could prevent the development of trauma and other mental health concerns, and could also prevent further episodes of school non-attendance.
Support in school (fig. 1)
With cuts to local authority budgets making funding support in schools increasingly difficult to obtain, it isn’t surprising that almost half of respondents indicate that they were not supported in school prior to non-attendance. This figure reduces to 36.14% of respondents being unsupported during the periods of non-attendance. This demonstrates that schools are taking a reactive approach to support, which contravenes chapter 5 of the Equality Act 2010 in which schools have a duty to be anticipatory in the provision of reasonable adjustments.
More concerning is the low percentage of these children who were assessed by educational psychologists either before or during non-attendance (11.34% and 19.28% respectively).
While this is likely (at least in part) due to the limited number of ‘slots’ each school is granted annually, it also may indicate that schools are not attributing potential or actual non-attendance to emotional, social, or learning difficulties.
While some respondents indicate that EHCPs/Statements were in place prior to non-attendance, they were often not written robustly, and were ineffective in identifying and meeting the support needs of the autistic young person. Others advise that support was withdrawn prior to the episode of non-attendance.
Reasons for non-attendance (fig. 2)
We asked respondents two questions relating to the reasons for non-attendance: what their experience was, and the reasons stated by educators. There is a stark difference in the way schools/professionals attribute reasons for non-attendance and the lived experiences of autistic young people and their families. For example, only 16.73% of schools acknowledge sensory processing differences as a contributing factor, yet this is identified as a factor in non-attendance by 67.74% of autistic people and their families. Conversely, 29.8% of schools/professionals consider overprotective parenting a factor compared to just 0.81% of autistic people and their parent/carers.
The top five reasons for non-attendance as indicated by autistic people and their parent/carers are:
1. Anxiety (93.55%)
2. Sensory processing differences (67.74%)
3. Difficulties with staff (52.85%)
4. Transition – both between schools and within the school day (51.61%)
5. Self-esteem (50.81%)
Though not in the top five, as our aim was to investigate potential links between school non-attendance and trauma for autistic pupils, it is worth noting that 48.39% of respondents indicate that this is a factor. Only 7.35% of schools/professionals identify trauma as a reason for non-attendance.
It is possible that the risk of non-attendance is exacerbated by the lack of understanding and acknowledgement of risk factors by professionals within the education system.
Returning to education
Respondents advise that only a minority of pupils return to their mainstream school without support after periods of non-attendance (9.02%). Most respondents are still out of traditional education, either Educated Other Than At School (EOTAS), home educated, or still registered but not attending (56.56%).
Only 36.89% of pupils return to state schools, regardless of whether they are full or part time, supported, and/or in specialist provisions.
This may be indicative of the reactive responses to supporting autistic pupils and the difficulties faced by parent/carers in obtaining funded support via EHCPs/Statements/Funded Healthcare Plans. While the expense of these plans is often quoted as a reason not to assess (as are arbitrary rules regarding academic attainment), the cost to local authorities and the NHS in funding out of school tutors, EOATS provisions, additional educational psychology, inpatient care, and mental health support is far greater than that of proactive, properly funded, and appropriate support. The cost to the autistic young person’s wellbeing when school placements fail is far greater again.
Impact on mental health (fig. 3)
We asked what impact school has had on the autistic person’s mental health. It is stark to see how many autistic young people have attempted suicide as a result of attending school: 2.94% had made an attempt, with 6.72% having suicidal thoughts. Further analysis of these figures reveals that of the 21 autistic young people who had suicidal thoughts and/or had attempted suicide, 8 were of primary school age (4-11), and 13 of high school age (11-16). In light of the rising suicide rates in under-25s, this should be of great concern.
Trauma/PTSD are also experienced by 18.91% of the autistic young people in our survey, far greater than the national average of 3%. While the title of our survey was likely to attract those who have experienced trauma, we still feel this figure needs consideration.
The top five mental health impacts are:
1. Anxiety (26.89%)
2. Negative impact – not specified (24.79%)
3. Low self-esteem (22.27%)
4. Trauma (18.91%)
5. Depressed/low (13.45%)
This has a lasting effect on the autistic pupil’s lives, with those who responded as adults stating poor mental health caused by school still impacts their lives today.
Physical health (fig. 4)
It is crucial that educators understand that many autistic people have co-occurring health conditions which impact on their ability to access education, and exacerbate the difficulty they have in managing day-to-day demands and expectations. Nearly a quarter of respondents indicate that they/their child has a co-occurring condition, the most common of which were connective tissue disorders such as Ehlers-Danlos Syndrome.
Our report indicates that there’s a stark difference in what is attributed by schools/professionals to the non-attendance of autistic pupils, and what they and their families experience. Respondents indicate that schools/professionals are more likely to blame behavioural issues which suggest the ‘fault’ lies with the autistic young person and/or their parent/carers. Autistic people and their parent/carers, however, are more likely to ascribe sensory processing differences, mental health conditions, and lack of support.
Even when autistic pupils are unable to attend school, our data suggests that support is not forthcoming, with many parent/carers having to source external support at their own cost.
This reported lack of support also indicates that the higher percentage of autistic pupils being educated at home – whether officially or not – is due to a lack of alternatives rather than being a choice. This further marginalises families as one or more parent/carers are forced to give up paid employment and/or reduce their hours in order to educate their children, potentially pushing them into poverty. In turn, the stigma associated with not being in paid employment can further isolate these families.
We acknowledge that most educators truly want the best for all of their pupils, yet a lack of understanding, acceptance, and budget is contributing to long-term poor mental health, with worst-case scenario outcomes. As autistic adults who do not have a co-occurring disability are around 9 times more likely to die from suicide (with women being at higher risk than men) and autistic children are 28 times more likely to think about, or attempt, suicide, the concerns we’re raising need to be considered by educators at all levels. The inclusivity of the education system needs to be re-evaluated, with a particular focus on mainstream schools identifying what can change, including attitudes, sensory environments, appropriate training (delivered by Autistic trainers), etc. Furthermore, consideration needs to be made for autistic pupils who are unable to attend mainstream settings, particularly if they are screened out of specialist settings due to their academic profiles. This ‘missing middle’ are being failed by both a reactive system which lacks accountability, and ideological ‘inclusivity’ which has meant closure of specialist provisions for all bar those with the highest support needs.
The top five co-occurring conditions are:
1. Connective tissue disorders (24.49%)
2. Gastro-intestinal disorders (14.29%)
3. Muscular-skeletal conditions (12.24%)
4. Autoimmune conditions (10.20%)
5. Epilepsy/seizure disorder (10.20%)
All conditions indicated by respondents have the potential to make accessing education in a school setting difficult, particularly when unsupported. 25.93% of respondents with co-occurring conditions indicate that health conditions contribute to the autistic pupil’s non-attendance, yet most indicate that schools/professionals didn’t accept this. These attitudes further undermine the experiences of autistic young people, and are likely to exacerbate relational difficulties with the education setting, detrimentally affecting an autistic pupil’s mental health.
Originally published in SEN112 – May-June 2021
Kat Williams is an award winning Autistic advocate and a director of Autistic UK CIC, focusing on systems advocacy, currently working with bodies such as Welsh Government and NHS Boards to influence policy. Kat’s focus is on inequality in access to healthcare and education, with her postgraduate studies and research in this area commencing in September 2021.
Kat's personal Twitter @KatWilliams123