Written evidence submitted by Professor Karen Guldberg (Director of Autism Centre for Education and Research (ACER) at University of Birmingham)


This submission evidence is based upon research undertaken by the Autism Centre for Education and Research (ACER) at University of Birmingham. This research, and the resulting policy recommendations, relates to persistent and severe absence of autistic pupils, including autistic pupils and families from minority ethnic backgrounds. The submission draws on two UKRI-funded studies and some preliminary research on school refusal undertaken for her PhD by Suzanne Fields. The first study is written by Guldberg et al. (2019) and can be found here. The second, undertaken by Perepa, Wallace & Guldberg (2023), focuses on the experiences of marginalised families with autistic children. (This research is currently in the process of being published and the full report is available on request). Our submission also refers to broader literature when relevant.

2. Summary and recommendations

Many autistic children and young people are not receiving the education and the reasonable adjustments that they need, and schools are too readily excluding autistic pupils, too accepting of absenteeism and, on occasion, actively encouraging parents to opt for home education. Approximately 122,000 individuals are waiting for an autism diagnosis, leading to their needs often not being recognised in schools.  It is particularly concerning that some of our research and analysis would suggest that absenteeism and exclusion is increasingly seen in the early years.

The impacts of absenteeism and exclusion are profound, lifelong, and affect the whole family. Autistic pupils not being in school due to absenteeism or exclusion has a significant impact on parental employment. Marginalised families (based on ethnicity, language, finances or being in care) have disproportionately greater negative experiences of the English education system.

An overview of our recommendations is provided here. The recommendations are provided in more detail at the end of this report.

Key recommendations for government

Key recommendations for schools



Key recommendations for research

3.The data

3.1. Absenteeism and autistic pupils

Interpreting the data set out below, our working hypothesis is that schools are too readily excluding autistic pupils, too accepting of absenteeism and, on occasion, actively encouraging parents to opt for home education.

When it comes to autism and absenteeism, the 2021/22 DfE data are clear that autistic pupils are out of school too often compared to the whole-school population:






Authorised absence rate








Persistent absence (10% or more) rate








Persistent absence (50% or more) rate








Unauthorised absence rate








Table 1: 2021/2022 DfE - rate of absenteeism for the whole-school population and just autistic pupils


3.2. There are inconsistencies in how both exclusion and absenteeism are recorded.

Our research, using the most recent DfE data for both exclusions and absenteeism, suggest some uncertainty and inconsistency in how school leaders are recording these occurrences. Our exclusions research found that schools were more likely to give the reason for why an autistic child was excluded under an “other” code than they would a non-autistic child. This was interpreted as evidence that some schools may be excluding pupils for “non-behavioural” reasons. Similarly, with absenteeism, the reasons recorded for being absent showed different patterns for autistic pupils versus the whole-school population. Illness was recorded as a more likely reason in the whole-school population versus autistic pupils (73% compared to 54%). They were also more likely than autistic pupils to be absent because of Covid-19. In contrast, an “other” code was much more likely to be used for autistic pupils (32%) compared to all pupils (12%). It is very hard to find out why this “other” code in absenteeism is used as there is no description of that code in the schools’ guidance on absenteeism.


3.3. School refusal

There is currently no DfE code for school refusal (or any of the other terms by which it is known). This would be very useful in order to distinguish those children who are unable to attend due to school refusal from those for whom no reason has been given for an absence. At the moment, most schools use unauthorised absence or illness for these students and this masks the scale of the problem. The international evidence indicates the following factors impact on absenteeism and highlights that the issue of school refusal needs to be taken into account in policy.


3.4. Absence from school is not just something that is occurring in secondary school.

Some of our research and analysis would suggest that exclusion and absenteeism is increasingly seen in early years. DfE data from 2021/22 on absenteeism (see Table 1 above), shows that in primary school autistic pupils are 2.5 times more likely to be persistently absent (10% or more of sessions missed). From our survey of parents on educational exclusion, 62% of respondents had children 10yrs or younger when exclusion occurred. DfE data for 2021/22 showed a suspension rate for autistic pupils of 5.2%, compared to the whole school primary school population rate of 1%. In secondary school the rates are 14% compared to 8.5%.

4.Factors causing persistent and severe absence among autistic pupils

4.1. The experiences of children and families who are marginalised.

Our most recent research has shown that marginalised families (based on ethnicity, language, finances or being in care) have disproportionately greater negative experiences of the English education system. DfE data (21/22) showed that some ethnic minority groups (e.g. Asian Pakistani or Asian Indian) and those with English as their second language were less likely to receive a diagnosis. Furthermore, DfE data also showed that autism families were much more likely to be on Free School Meals (FSM).  Our research looked at what was underlying these patterns and we found that many marginalised families experience significant barriers to services, such as accessing a diagnosis and finding the right school placement for their children. When their children do get a diagnosis, they are more likely to struggle navigating an education and benefits system that can feel overly complicated. Given the ethnicity distribution of school teaching staff (DfE data 2021/22 - 90% of teachers and 96% of headteachers are white British), many of the pupils and parents of marginalised families (64% of pupils are classified as white British) feel like they are not represented in school life. We did hear that for some marginalised families, the stigma associated with having an autistic child and perceptions of autism from their communities could mean that they keep their child out of school.

DfE data from 2021/22, shows that when it comes to absenteeism in the whole school population, FSM status is a factor that increases the risk of absenteeism and to a lesser degree those with English as their second language. What is clear though is that being autistic increases the risk for absenteeism to a much greater degree than these other risk factors. Future academic research and DfE data publications should look more closely at how marginalised group status and autism intersect. 

4.2. Peer relations

In our research on educational exclusion and autism, 81% of autistic adults completing our survey about their time in school reported that they experienced bullying. One of the biggest impacts of being away from school is on maintaining peer relations. Autistic people often struggle to form friendships and so, when they find them, they are extremely valuable in terms of the individual’s socioemotional and cognitive development. In our exclusion study, 58% of parents reported that one of the consequences of exclusion was being isolated from friends. One can imagine that this would also be the case for absenteeism. Good social relations are clearly a key factor in the pupil wanting to be in school.

4.3. Mental health.

In addition to the above statistics, almost half of the autistic participants in our exclusions research reported that they experience anxiety (46%) and 41% reported being depressed in school. Sixty-seven percent of parents of autistic children and young people currently in school reported heightened levels of anxiety and almost half (49%) reported on problems their child had paying attention in class.

A high proportion of autistic adults and parents of autistic young people in our research talked about school as being a traumatic experience. For many, being back at home felt like their “safe place” to be. They also spoke of the long-term impacts on mental health and opportunities as a consequence of being out of school.

4.4. Diagnostic services.

NHS waiting list data, as of June 2022, suggests that approximately 122,000 individuals are waiting for an autism diagnosis. Delays in autism diagnoses have always been a factor for individuals and families but the combination of real term education budget cuts and Covid-19 has put increased pressure on an already stretched system. In our research, we heard from parents who had little choice but to go for a private assessment, but this was not always accepted by the local authority.


Given the pressures on this system, any evidence around absenteeism needs to be considered in terms of the large numbers of pupils who are waiting for a diagnosis or who have a private diagnosis that is not accepted by the local authority. These pupils have little or no SEND support in school and may be at increased risk of absenteeism.


4.5. A disconnect between the beliefs of educators and parents/autistic adults.

Educators reported in our research that the causes for autistic pupils not being in school or being excluded was the young person’s behaviour – e.g. being disruptive or aggressive. On the other hand, parents and autistic adults argued that if more was done to make reasonable adjustments and to improve staff knowledge about autism, then schools would be a much more attractive place to be.

Taken together, many of these factors listed above speak to the fact that autistic children and young people are absent from school because it is an unwelcoming, stigmatising and marginalising place for them to be, with an environment that is not adapted to their needs or with staff who are not adequately trained. 

5. How schools and families can be better supported to improve attendance

5.1. Recommendations for schools

We identified in our research examples of good practice. Broadly speaking, school leadership was key to setting a positive and inclusive ethos for the school, as well as increasing awareness of neurodiversity and publishing a strong policy combatting bullying and social marginalisation.   

Key recommendations for schools based on our analysis of best practice:

  1. Improving mental health for all. Schools can become quite negative and pressurised places. Training and tools for teachers to maintain good mental health, as well as to support pupils, is needed. So is closer working with other agencies who can provide mental health support. Parents of autistic pupils feel enormous amounts of stress, anxiety and depression, so more should be done to support the home environment as well.
  2. Relationship building. For many parents, they are looking for schools to show empathy and understanding for their specific needs. Schools should look to have staff who liaise and work with the local community, as well as support EHCP applications. School staff should also represent the local community – e.g. in terms of ethnicity and culture.
  3. Creating parent support networks. Many parents, especially those who are marginalised, feel unsupported and isolated. Schools that provided a place for parents to meet and network were regarded positively in our research. It is often helpful when translation and interpretation is provided to those families who require it.
  4. Peer support programmes. Autistic pupils are more likely to be in school if they are not socially marginalised and feel accepted. Peer support programmes, whole-school approaches to understanding neurodiversity and providing mentoring opportunities to autistic pupils can make a difference.
  5. Flexibility and understanding. Autistic pupils may require a little bit more flexibility in how school staff approach attendance and reluctance to participate. Schools should not impose strict behaviour policies as they are ineffective in terms of improving attendance and reducing exclusion.
  6. A commitment to making and recording reasonable adjustments. The school must make, record and review reasonable adjustments in consultation with the pupil and parent. Particularly in terms of adjusting the sensory environment.


5.2. Recommendations for government

We call on government to publish targets to reduce the levels of exclusion and absenteeism in autistic pupils.

5.2.1. Impacts on parents’ and autistic individuals’ employment should be mitigated

It is clear from our current research on marginalised families and the previous work on educational exclusion that autistic pupils not being in school due to absenteeism or exclusion has a significant impact on parental employment. From our survey on educational exclusion, we found that three quarters (76%) of parents had to take time off work and almost half (47%) reported on financial impacts. Compounded by an education system that is currently not adequately supporting autistic pupils into paid employment, it is unsurprising that two of the largest contributors to the approximately £32billion to the UK economy per annum are parental lost productivity in childhood and autistic individual lost productivity in adulthood, as reported in this study.

  1. We recommend government policies to protect the employment status of parents of SEND pupils.
  2. We recommend that government produce clear guidance for schools on how they can make adjustments and arrangements with parents to protect their employment.
  3. Where absenteeism occurs, we ask that guidance is published for schools on how to protect their opportunities for work experience, careers guidance and transitioning out of education


5.2.2. A call for more training and funding.

In our research, some educators freely admitted that they did not have the funding, time, knowledge or multiagency support to provide adequately for autistic pupils. ACER has worked with the Autism Education Trust (AET) to develop a professional development module for educators on reducing exclusion Exclusions Module | Autism Education Trust

  1. We recommend that the AET training on exclusions is expanded to include reducing absenteeism and school refusal.
  2. We recommend that all schools have a family liaison officer who is trained in autism and who has experience of supporting marginalised families.
  3. Funding should be provided to support pupils and families who are waiting for a diagnosis, who have received a private diagnosis or one from oversees.

5.2.3. DfE coding and presentation of data


  1. We recommend that if educators use an “other” code for absenteeism or exclusion in their data submissions to DfE that there is a blank space to explain what “other” means.
  2. We recommend that a code in DfE data collection is included for school refusal.
  3. We recommend that DfE statistics can be processed to look at absenteeism and exclusion by certain pupil characteristics (such as ethnicity, FSM status and first language).
  4. We recommend that DfE data can be analysed and presented in terms of how absenteeism and exclusion impact on educational performance (e.g. key stage levels) and, if possible, later outcomes (e.g. training, further and higher education). 

6. Impact of the reforms

We are concerned about this line in the section about part-time timetables: “Any pastoral support programme or other agreement should have a time limit by which point the pupil is expected to attend full-time, either at school or alternative provision.” Time limits will add to the anxiety felt by students and their parents and will therefore make the intervention less likely to succeed.


January 2023