the constructive campaigning parent support project: report 3 - disobedience or disability? 2009

Disobedience or disability?

The exclusion of children with

autism from education

Report 3 – 2009

The Constructive Campaigning

Parent Support Project

Disobedience or disability?The exclusion of children with

autism from educationReport 3 – 2009



Working with parents

and carers in

Birmingham

Ealing

Havering

Lambeth

Lincolnshire

Medway

Oldham

Poole

Redcar and Cleveland

Staffordshire




Report 3 – 2009

Introduction

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.

There are different types of exclusion:

z formal or official exclusion (i.e. legal exclusion)

z informal or unofficial exclusion (i.e. illegal exclusion)

z exclusion from the classroom during teaching time

z 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

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.




Report 3 – 2009

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:

z the run up to Christmas (74%)

z the beginning of a new term (68%)

z the end of term (64%)

z school sports day (58%)

z school trips (58%)

z school inspections (26%)

Parents reported other concerns including:

z the frequency of these cases of illegal exclusion

z parents were not informed about what reasonable adjustments were being

made following these cases of illegal exclusions.

z 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




and carers in

Birmingham

Ealing

Havering

Lambeth

Lincolnshire

Medway

Oldham

Poole


Staffordshire




Report 3 – 2009

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.

‘Teachers don’t think of it as illegal exclusion, they just think it would be best

if he goes home early.’

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:

z an incident of disruptive behaviour directed towards school staff

z an incident of disruptive behaviour directed towards other children

z a bullying-related incident

z the child was unable to cope with change

z the school under-resourced or unable to address the situation

z 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:

z disciplinary (the exclusion was given as part of a sanction)

z preventative (to help a child calm down)

Parents responding to the survey were concerned about:

z the lack of recording of internal exclusions so that parents were aware when

they took place

z 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.

‘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.’




Report 3 – 2009

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.




and carers in

Birmingham

Ealing

Havering

Lambeth

Lincolnshire

Medway

Oldham

Poole


Staffordshire




Report 3 – 2009

‘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.’

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 smooth-

running 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.

‘Maybe it would be a useful approach to see if a school’s league table

position is related to its propensity to exclude.’




Report 3 – 2009

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:

z 33 parents reported their child’s exclusion regularly required them to leave

work and this had a detrimental effect on their employment

z in 85% of these cases, the exclusion was illegal

z 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.




and carers in

Birmingham

Ealing

Havering

Lambeth

Lincolnshire

Medway

Oldham

Poole


Staffordshire




Report 3 – 2009

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.

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:

z school staff coming into contact with the child being aware that their child

has special educational needs

z 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.

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.




Report 3 – 2009

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.




and carers in

Birmingham

Ealing

Havering

Lambeth

Lincolnshire

Medway

Oldham

Poole


Staffordshire




Report 3 – 2009

‘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.’

‘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

z 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

z 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

z 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

z Directors of Children’s Services to remind schools including teachers and

governors that unofficial exclusion is illegal

z provide accessible information for parents about exclusion




Report 3 – 2009

Suggestions of good practice for schools

z remind school staff to be aware of hidden disabilities such as autism so

they don’t confuse disability with disobedience

z 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

z be aware that unofficial exclusion is illegal

z 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

z ensure that clear information on exclusion is explicit in the school’s behaviour

policy

z provide accessible information for parents about exclusion

Sources of additional information

z 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.

z 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




and carers in

Birmingham

Ealing

Havering

Lambeth

Lincolnshire

Medway

Oldham

Poole


Staffordshire




Report 3 – 2009

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.

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.

For further information on the TreeHouse Constructive Campaigning Parent Support Project please email [email protected] 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.

The Pears National Centre for Autism Education Woodside Avenue London N10 3JA T: 020 8815 5444 E: [email protected] www.treehouse.org.ukRegistered charity number 1063184 Printed on recycled paper

the constructive campaigning parent support project: report 3 - disobedience or disability? 2009

Documents

exclusion of children

illegal exclusion z

unofficial exclusion

exclusion survey

experiences of exclusion

different types of exclusion

legal exclusion z informal

childs autism