The Constructive Campaigning Parent Support Project: Report 3 - Disobedience or disability? 2009

The Constructive Campaigning Parent Support Project

Disobedience or disability?

The exclusion of children with autism from education

Disobedience or disability?

The exclusion of children with autism from education Report 3 – 2009

Report 3 – 2009

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The Constructive Campaigning Parent Support Project

Introduction Working with parents and carers in Birmingham Ealing Havering Lambeth Lincolnshire Medway Oldham

Exclusion has a huge impact on children with autism and the lives of their families. Many children with autism are being denied access to an appropriate education because of exclusion, either from the classroom or from school.

Parents and carers fear this is because many schools are either not willing or are not able to make ‘reasonable adjustments’ for their child’s autism. Parents and carers responding to this exclusion survey have put forward proposals which, if adopted by schools and local authority children’s services, could transform the education received by children with autism.

Poole Redcar and Cleveland Staffordshire

There are different types of exclusion: zz formal or official exclusion (i.e. legal exclusion) zz informal or unofficial exclusion (i.e. illegal exclusion) zz exclusion from the classroom during teaching time zz exclusion from specific activities such as school trips The TreeHouse Constructive Campaigning Parent Support Project surveyed parents and carers of children with autism from ten different local authorities on their experiences of exclusion. The survey was carried out in 2007 and specifically explored parents’ experiences of informal or unofficial exclusion.

Parents were asked about their experiences of exclusion during the 12 month period immediately prior to completing the survey and the impact the exclusions had on children with autism and their families. There were 75 responses from parents and carers across England, although this is a small sample, we feel the findings are representative of a wider hidden problem with serious ramifications.

Formal or official exclusion from school 43% of parents reported their child with autism had been formally or officially excluded within the previous 12 months; only a quarter of these exclusions were one-off occurrences ‘My child’s school uses exclusion as its autism strategy.’

Informal or unofficial exclusion from school (illegal exclusion) 55% of parents surveyed reported that their child with autism had experienced illegal exclusion

Disobedience or disability?

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Parents completing the survey frequently reported cases where they were asked to remove their child from school before the end of the school day without any formal procedure being followed. This practice is known as informal or unofficial exclusion and is illegal.

These exclusions often involved phone calls in the middle of the day asking parents to pick their child up from school. Reasons given included incidents when the child was perceived by school as finding a particular lesson, period of the day or activity difficult. Parents believed the real reason for the exclusion was that the school did not feel able or equipped to deal with the child’s specific needs, and that this area needs to be examined and explored.

Illegal exclusion often occurs as a reactive response to critical incidents at school. The decision is made to send the child home to ‘cool off and calm down’ and may be perceived as a short-term solution to managing a heated situation.

‘The Learning Support Assistant employed by the school came up to me after three days and said “How do you deal with Adam?”.’

Parents’ responses to the survey showed that the illegal exclusion of children with autism is widespread. Only two parents reported that the illegal exclusions were infrequent, with just one or two incidences. For the majority of the respondents, illegal exclusion was happening frequently. Two parents said their child was excluded on an almost a daily basis and another two parents had simply lost count of how many times it had happened.

Parents were asked about the pattern of these illegal exclusions and whether they were linked to particular events or series of events within the school calendar.

71% of parents said there were specific events, times of day or school year that were linked to occasions of illegal exclusion Events that parents reported are linked with exclusion were: zz the run up to Christmas (74%) zz the beginning of a new term (68%) zz the end of term (64%) zz school sports day (58%) zz school trips (58%) zz school inspections (26%) Parents reported other concerns including: zz the frequency of these cases of illegal exclusion zz parents were not informed about what reasonable adjustments were being made following these cases of illegal exclusions. zz parents were not informed how schools recorded these illegal exclusions.

Only 5 parents reported that the school made it clear that they were recording the (illegal) exclusion. A further 29 parents stated it was unclear whether or not it had been recorded

Text in italics are quotes from parents and carers responses to the Constructive Campaigning Parent Support Project Exclusion survey 2007 Disobedience or disability?

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The Constructive Campaigning Parent Support Project Working with parents and carers in Birmingham Ealing

Some parents reported that this process was ‘negotiated’ although parents often felt ‘obliged to comply’. Others reported having ‘no idea’ other than ‘it was clear it wasn’t official’. In one case the parent said that the exclusion was only recorded in response to pressure from other parents. In another instance, the school denied that any exclusion had taken place at all.

Havering Lambeth Lincolnshire

‘Teachers don’t think of it as illegal exclusion, they just think it would be best if he goes home early.’

Medway Oldham Poole Redcar and Cleveland Staffordshire

Reasons given by schools for illegal exclusions Parents were asked about the circumstances leading up to illegal exclusion and the reasons they were given when this occurred. Responses included: zz an incident of disruptive behaviour directed towards school staff zz an incident of disruptive behaviour directed towards other children zz a bullying-related incident zz the child was unable to cope with change zz the school under-resourced or unable to address the situation zz the child needed time to calm down or ‘cool off’ Overwhelmingly, parents perceived a school’s readiness to exclude as an indication that the school was unable or unwilling to make the reasonable adjustments required to meet the child’s needs.

Exclusion from the classroom – internal exclusion Parents reported that they had experienced two kinds of explanations for their child’s internal exclusion from the classroom: zz disciplinary (the exclusion was given as part of a sanction) zz preventative (to help a child calm down) Parents responding to the survey were concerned about: zz the lack of recording of internal exclusions so that parents were aware when they took place zz the lack of explanation about the purpose of exclusion, which made it difficult for parents to address the problem.

One parent expressed great concern that she knew this was happening but had no way of knowing how often, as her daughter was unable to tell her.

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‘It usually happens in lessons where she has been prevented from being included because she would disturb the other children e.g. literacy and numeracy hour. This was especially common when her support was off sick, and a dinner lady took her on nature walks. We only found out because classmates and other parents told us. We kicked up a fuss on many occasions including going to the governors. Now they just deny it, but we know it still goes on but our daughter can’t tell us.’

Poor communication between schools and parents on internal exclusion left parents anxious and frustrated. As they were not routinely informed of instances of internal exclusion, parents believed that neither they nor the schools had full details of the circumstances leading up to the internal exclusion. If they were informed of an internal exclusion, parents found it difficult to establish if the reason for the exclusion was disciplinary or preventative for example to remove the child from the classroom to defuse an escalating situation Parents were concerned that without adequate reporting mechanisms, this practice could be abused. They believed schools may exclude children from the classroom, for inappropriate reasons, and no one would know. This damages trust between parents and the school.

Without clear reporting mechanisms, schools can mask their inability to cope with the situation or meet the child’s needs by making use of internal exclusion. Parents reported internal exclusion often occurred routinely rather than as a strategy to sensitively manage one-off incidents, resulting in children repeatedly missing out on vital parts of their education.

Exclusion from activities – internal exclusion Parents cited a number of events or circumstances linked with exclusion including plays, concerts, assemblies and other special events Many parents reported their children were not able to participate in activities such as after school clubs or school trips. Some parents reported that their children could only attend outings if the parent would accompany them. This is disruptive for parents and distressing for the children. They are prevented from fully participating in the whole school experience if the school does not make reasonable adjustments.

‘There was this time when Anna was taking part in a school Christmas play.

She was early for her cue – so they dragged her back off stage. She was upset so they prevented her from continuing in the production and the next day’s performance she was not allowed to take part. We complained in writing and got an apology.’

The impact of exclusion on families Impact of exclusion on children with autism Parents reported that their child’s exclusion led to them displaying signs of extreme disress, anxiety and low self-esteem. One parent reported that her son was excluded five times between the age of 13 and 15. This had an extremely negative impact on his academic performance, in coursework and exams. In the majority of cases, the distress experienced by children with autism which was caused by extremely difficult experiences of school can cause pervasive and long lasting damage.

Disobedience or disability?

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The Constructive Campaigning Parent Support Project Working with parents and carers in Birmingham Ealing

‘Andrew was sent home approximately three times a week for five years. At one point we had to collect him each lunch time for a period of two months leading up to summer. The thought of mainstream is very stressful and he expresses that he never wants to go back. He had some very traumatic experiences there which he still relives in nightmares.’

Havering Lambeth Lincolnshire Medway Oldham Poole Redcar and Cleveland Staffordshire

Exclusion linked to bullying In incidents related to bullying, parents reported that schools tended to penalise the victim rather than the aggressor. Schools appeared to use exclusion as a ‘quick fix’ solution, avoiding the issue rather than addressing the bullying behaviour. One parent reported that her child was excluded from school ‘for her own safety’ after a series of bullying attacks over a two year period. The child sustained serious injuries including broken bones.

Many parents regarded the systematic bullying of children with autism as a key contributing factor in cases where there is an escalation of disruptive behaviour. They believed this to be due to the children’s frustration, often experienced as a result of social difficulties at school. This frustration was also thought by parents to be compounded by the schools’ reluctance to put in place reasonable adjustments.

Parents reported a significant number of exclusions which were linked to children retaliating to bullies, or extreme agitation due to being teased or ‘picked on’.

‘Exclusion seems like the easy way to deal with ASD children.’

The impact of exclusion on parents The perceived lack of transparency around the illegal exclusion of children with autism from school was damaging, and played a key part in the breakdown in communication between school and parents. Many parents expressed concern over the acrimonious relationship that developed between parent and school subsequent to, or as a result of, these exclusions. Several parents said it appeared as though children with autism were perceived as a problem or a nuisance and ‘got in the way’ of other children’s learning and the smoothrunning of the school.

‘The school have gone as far as to say that since my son came to that school the teachers’ work/home balance has been ruined and they are stressed out and on the edge simply because my son is there.’

Parents described the difficulty in battling against this seemingly entrenched negative attitude of some schools. The message that some parents received from their schools suggested that their child was a burden. This led to cynicism about whether the school has a hidden agenda.

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‘Maybe it would be a useful approach to see if a school’s league table position is related to its propensity to exclude.’

When some parents attempted to challenge the school about illegal exclusion they frequently reported feeling labelled as ‘difficult’ or ‘challenging’ parents.

Others report that they were dismissed out of hand and made to feel that their concerns were not legitimate or important enough. One parent reported being informed by text message that it would ‘be best’ not to bring her child in to school. She asked how this would be recorded and was told by the local authority ‘schools are allowed time out too’. Parents reported feeling powerless in these situations and found it difficult to reach positive solutions.

‘We feel strongly that the pressure on schools to achieve good results has a detrimental effect on their ability or willingness to support children with special needs.’

Parents were asked whether the pattern of exclusion had an impact on their ability to work or participate in study: zz 33 parents reported their child’s exclusion regularly required them to leave work and this had a detrimental effect on their employment zz in 85% of these cases, the exclusion was illegal zz only seven parents reported that exclusion had not affected their ability to work; one of these said it wasn’t a problem because their employer had a policy of flexible working and another said they had an understanding and approachable manager.

‘The Jobcentre doesn’t understand, as I am already being hounded by them to find work. I don’t feel there are enough hours in the day to go to work let alone find it.’

‘It is presumed that, if a school can’t cope, parents are on hand at the drop of a hat to collect their child. It is hugely disruptive if you happen to have a job to go to! I have had to give up my career to be on call for my child – this has a huge implication on earnings and future pension income.’

One parent who worked part time said she is ‘waiting for the phone to ring every afternoon’ and this illegal exclusion had a significant affect on her reliability at work. Another parent had to take three months unpaid leave when her school age son was only provided with three hours education in school a day. She reported feeling constantly anxious about losing her job because of the amount of time she had to take off work.

Parents’ solutions and recommendations Autism awareness training for the whole school workforce Many parents believe that their child’s illegal exclusion from school was a result of a general lack of understanding of school staff about autism. When school staff are well trained in autism, it makes a real difference to a child’s education.

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The Constructive Campaigning Parent Support Project Working with parents and carers in Birmingham Ealing Havering Lambeth Lincolnshire

One parent described a dramatic turnaround in her son when he was taught by a teacher who understood the needs of her child with autism. The teacher made reasonable adjustments in the way he worked with her son, using a positive and encouraging approach. However, in general parents believed schools did not and were not able to make reasonable adjustments to ensure the school meets their child’s needs. This was not because school staff do not care, it is because they have not been trained in autism awareness or shown strategies for working effectively with individual children with autism.

Medway Oldham Poole Redcar and Cleveland Staffordshire

Schools need clear procedures for recording every exclusion Many parents believe that there needs to be an agreed procedure for recording all exclusions, including instances of internal exclusion. This is particularly important for children with autism with communication difficulties.

This will help highlight the amount of education their child is missing and identify triggers which may lead to disruptive or inappropriate behaviour.

Schools need clear mechanisms to ensure all staff are aware which children have autism Many parents emphasised that they felt that the frequency of their child’s exclusions was dependant on: zz school staff coming into contact with the child being aware that their child has special educational needs zz the level of their understanding of autism and knowledge of practical strategies and techniques which may be effective with their child Several parents were particularly concerned about unexpected changes of teachers or learning support assistants. They thought it essential that, when staff changes occurred, these staff should be provided with autism awareness training before working with a child or children with autism.

‘My son was fine until a new head took up post – then there were almost daily phone calls to collect him or be informed of incidents.’

Schools need to become more proactive in ensuring staff understand every child’s special educational needs – ‘disability not disobedience’ Autism is a complex condition and much of the impact of autism is ‘hidden’ to the untrained eye. Some children with autism may experience sensory difficulties including noise, light and touch that other children may not perceive or experience. It is not difficult to imagine how sensory difficulties like this, when unrecognised, may lead a child with autism to become distracted or frustrated and could result in conflict in the classroom.

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Parents are keen to work with schools to identify possible triggers related to their child’s autism and to explain strategies which can be adopted to overcome these difficulties. This would help the schools put in place appropriate reasonable adjustments which may prevent any further exclusion.

Schools must not underestimate how difficult it is for children with autism to cope with change Many children with autism need support to cope with relatively small changes within school as well as the main transition from the primary to the secondary phase. For example, class teachers need to pass on information about the child’s special educational needs as the child progresses through each year group. They need to explain the strategies that work with the child’s the new teacher or learning support assistant.

‘My son went through infants no problem as he got appropriate help and understanding. Junior school is unsympathetic to his difficulties. He came on leaps and bounds in infants and it has been nothing but negative at juniors.’

Another parent echoed the need for more understanding and making reasonable adjustments, stating it can be something as simple as lack of preparing the child for what was going to happen that can cause a situation to escalate, resulting in exclusion.

‘In Year 2 I was asked to take my child home because he had been disruptive during SATS tests. He had not understood what was going on, got upset with the class teacher that he normally quite likes and threatened to kick her when lying on the floor – simply lack of preparing him.’

Publicise success stories to show it can be done One parent reported a transformational change once the school understood her child’s needs. Her son had been illegally excluded over lunchtime for three years. The disruptive behaviour that precipitated these exclusions was, according to the parent, triggered by staff mishandling the situation. Once his needs were understood, the illegal exclusions stopped. ’They have been getting fantastic results out of him and other teachers are using these experiences for modeling their own lessons. The results have been great and his attitude has been one of a child who can succeed!’

Exclusion must be fair, consistent and based on evidence not assumptions In cases of illegal exclusion, parents were particularly distressed when the decision to exclude was based on false or negative assumptions about the child or indicated a lack of understanding about autism. This view was supported by a significant number of respondents who claimed that schools were often heavy- handed with children with autism, based on expectations rather than the child’s actual behaviour. They also reported that exclusions were enforced when there appeared to be scant evidence of what actually happened and not necessarily because the child was being naughty or disruptive.

Disobedience or disability?

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The Constructive Campaigning Parent Support Project Working with parents and carers in Birmingham Ealing Havering Lambeth Lincolnshire Medway Oldham

‘Before my son even started school we were asked to pick him up half an hour early. The staff had been told he had Asperger’s Syndrome and they assumed he would not be able to sit still during the quiet story time. They did not attempt to discuss or even give him a chance. A friend advised me to say that this was not acceptable and that they could not legally ask me to do it. She advised me to ask for a formal meeting with the teacher and the SENCO urgently. She said they should look at strategies to help in that time, not exclude him. I went in and put this to the teacher and they backed down. They later admitted they should not have attempted to exclude him and apologised.’

Poole Redcar and Cleveland Staffordshire

‘In our experience, the exclusions and other distressing situations could have been avoided if the school had accepted the problems much sooner and been able to provide proper support and understanding.’

Conclusion Issues relating to exclusion have been the single greatest area of concern for the parents and carers who have been involved in the TreeHouse Constructive Campaigning Parent Support Project across all ten local authority areas.

We arranged meetings between parents, senior officers from children’s services and the project team in all ten areas. In every area, illegal exclusion of children with autism was recognised as a serious issue by the local authority.

All the local authority officers we met expressed their concern and they have addressed the issue in different ways. In Staffordshire, the Corporate Director of Lifelong Learning wrote an open letter to parents asking them to contact him directly by email with details of any case of illegal exclusion. This robust response has delivered a clear message to local headteachers and, at an anecdotal level, cases of illegal exclusion appear to have virtually stopped in Staffordshire.

Suggestions of good practice for local authorities zz provide mandatory autism training for the whole school workforce, including headteachers, lunchtime supervisors, school office staff and also school governors as well as classroom staff zz recognise and respect the understanding and expertise of parents of children with autism; involve them in planning and delivering autism awareness training to schools and school governors zz Directors of Children’s Services to reassure schools they can highlight and explore issues related to exclusion without fear of reprisal; record the true incidence of exclusion, even if exclusion figures go up zz Directors of Children’s Services to remind schools including teachers and governors that unofficial exclusion is illegal zz provide accessible information for parents about exclusion Disobedience or disability?

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Suggestions of good practice for schools zz remind school staff to be aware of hidden disabilities such as autism so they don’t confuse disability with disobedience zz establish a system to ensure that all school staff know which children have autism and what strategies they must use to communicate effectively with each individual child zz be aware that unofficial exclusion is illegal zz maintain positive relationships with parents, keep talking and don’t be afraid to ask for their advice on what works and what doesn’t work with their child zz ensure that clear information on exclusion is explicit in the school’s behaviour policy zz provide accessible information for parents about exclusion Sources of additional information zz the DCSF publication ‘Improving behaviour and attendance: guidance on exclusion from schools and Pupil Referral Units’ September 2008 provides full details on procedures relating to exclusion. zz parents can download the Parent’s Exclusion Record, inspired by parents from the Constructive Campaigning Parent Support Project, to maintain their own records of their child’s exclusion. This can be used as part of a child’s annual review and can also help establish constructive dialogue between the parent and the school. www.treehouse.org.uk

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The Constructive Campaigning Parent Support Project Working with parents and carers in

We would like to thank all the parents who responded to the survey. We are particularly grateful to the Constructive Campaigning Parent Support project group leaders for distributing the survey through their local networks.

Birmingham Ealing Havering Lambeth Lincolnshire

We wish to thank the many organisations that supported this project including, the Department for Children, Schools and Families, the Sylvia Adams Charitable Trust, the Harold Hyam Wingate Foundation, and CHK Charities Ltd.

Medway Oldham Poole Redcar and Cleveland Staffordshire

For further information on the TreeHouse Constructive Campaigning Parent Support Project please email psp@treehouse.org.uk or call 020 8815 5443. You can also visit www.treehouse.org.uk and click on Parent Support Project for latest developments in each of the areas covered by the project.

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The Pears National Centre for Autism Education Woodside Avenue London N10 3JA T: 020 8815 5444 E: info@treehouse.org.uk www.treehouse.org.uk Registered charity number 1063184

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