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Missing out? Autism, education and ethnicity: the reality for families today

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Missing out? Autism, education and ethnicity: the reality for families today

Missing out?
Autism, education and ethnicity:
the reality for families today
Clare Corbett and Prithvi Perepa
First published 2007 by The National Autistic Society
393 City Road
London
EC1V 1NG
Email: nas@nas.org.uk
www.autism.org.uk
All rights reserved. No part of this publication can be
reproduced, stored in a retrievable system or
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mechanical, photocopying, recording or otherwise
without the prior permission of the copyright owner.
Copyright © The National Autistic Society 2007
ISBN 1-905722-27-3 978-1-905722-27-3
Designed by Cottier and Sidaway
Printed by Crowes Complete Print
1
Contents
What is autism? 3
Key findings and recommendations 4
make school make sense 6
The right school for every child 12
The right training for every teacher 16
The right approach in every school 19
Good practice 21
Time to end the double discrimination 24
Note: the photographs in this report feature young people who attend National Autistic Society schools,
not the interviewees whose responses are included throughout the text.
2
Acknowledgements
The authors would like to thank the families who contributed to the research in this
report. We would also like to thank all the staff at The National Autistic Society (NAS)
who have worked on the make school make sense research and this report,
particularly Beth Reid, Melanie Quashie, Francine Brower and Chris Gibbons.
Terminology
The term ‘black and minority ethnic’ (BME) communities is used in this report to
represent anyone who does not come from a White British background. This
includes visible minority ethnic communities, including those from mixed
backgrounds and those who are not visibly different but who experience
disadvantage by virtue of minority status such as gypsies and travellers, asylum-
seekers, refugees or new immigrants.
Methodology
In 2006 the NAS carried out the largest ever survey on autism and education in the
UK as part of the make school make sense campaign. The statistics quoted in this
report are taken from respondents who described their child as from a non-White
British ethnic background. It is important to bear in mind that as NAS members the
experiences of these respondents are probably better than the average because of
the support they receive. Additional qualitative data comes from research with
parents of children with an autistic spectrum disorder who are from BME groups
between September and December 2006 and from qualitative interviews conducted
with families from BME communities from June 2004 to July 2005.
3
What is autism?
Autism1is a lifelong developmental disability that affects the way a person
communicates and relates to the world around them. The autistic spectrum
encompasses children with profound learning disabilities and little or no verbal
communication, through to those with average or high IQ, including those with
Asperger syndrome. Everyone with the condition shares three main difficulties,
known as the ‘triad of impairments’.
Social interaction
Difficulty with social relationships ranges from being withdrawn, to appearing
aloof and indifferent, to simply not fitting in easily. People with autism may also
seem insensitive to the feelings of others. This can lead to problems in the
playground, with making friends and, in turn, bullying.
Social communication
Difficulty with verbal and non-verbal communication ranges from difficulties
with developing speech, to repetitive or formal use of language. People with
autism may also not fully understand gestures, facial expressions or tone of
voice. They may also understand instructions and questions literally.
Understanding teachers and participating in class can be challenging
as a result.
Social imagination
Difficulty in social imagination can impact in understanding how others think
and feel and in the development of interpersonal play and imagination.
Difficulty in this area may also manifest itself in a resistance to change, so
children with autism may find it hard to cope with changes to their timetable,
for example. They may also struggle with subjects that use abstract ideas.
1 Here we use the terms autism and autistic spectrum disorder (ASD) to refer to a group of disorders,
including classic autism, Asperger syndrome and high-functioning autism.
4
Key findings and
recommendations
Children with autism from black and minority ethnic (BME) communities experience
discrimination on two fronts – their disability and their ethnicity. This isolates them
from the education system that should provide opportunities for success. Some
excellent practice exists but sadly this is still an exception. The neglect of BME
families by researchers, professionals and service providers is unacceptable and
must be addressed with urgency.
Issues for BME families
Evidence about the prevalence of autism in various communities and its impact
on family life is inconsistent.
Communities may not be aware of autism, their rights and relevant services.
Services that are available do not always meet the needs of these families.
Recommendations
Local authorities, Primary Care Trusts (PCTs) and Local Health Boards (LHBs)
must ensure that generic autism services are accessible to families from all ethnic
backgrounds and should help in raising awareness about autistic spectrum
disorders (ASDs) and the support available amongst BME communities.
Research should be commissioned into prevalence rates in different
communities, and the impact of culture on the diagnostic process.
The right school for every child
Only 31% of parents of BME children felt as if they had a choice of school for
their child.
Many parents had to fight to get appropriate education for their children.
41% of children from BME groups in our survey had been bullied, and many
parents commented on the devastating impact it had on their child.
24% of BME children had been excluded from school. In addition, just 22% of
parents said that their local authority provided support when the child was
excluded. Data on fixed term exclusions for pupils with special educational
needs (SEN) in England in 2004-05 reveals substantial variation between
different ethnic groups.
Recommendations
It is essential that local authorities work to ensure that every child with autism
has local access to a diverse range of mainstream and specialised educational
provision which can meet the child’s individual needs.
5
Bullying on the basis of disability, race or both must be addressed by better
training for school staff and by ensuring that the interests of children with autism
from BME backgrounds are explicitly included within schools’ anti-bullying policies.
The Government and Welsh Assembly Government must prioritise analysis of the
reasons for differences in exclusion rates between ethnic groups.
The right training for every teacher
Only 31% of BME families thought that teachers had received the professional
training they need to meet the special needs of children with autism.
BME families rated the quality of training of all professionals in their child’s school
at least 10% lower than their White British counterparts.
Recommendations
All professionals working with children with autism from BME communities should
receive training in autism as well as cultural awareness to meet the needs of
diverse communities.
The right approach in every school
28% of parents believe that their children would benefit from speech and
language therapy but are not able to access it.
Parents from BME communities were less satisfied with their child’s academic
and social progress compared to their White British counterparts.
Recommendations
Schools and local authorities should monitor the experiences of BME families to
assess and address differences in satisfaction levels.
The Government and Welsh Assembly Government should resource and monitor
the implementation of speech and language therapy actions in the National
service framework for children, young people and maternity services in England
and in Wales and ensure that children from BME backgrounds can and do access
this support if they need it.
Speech and language therapists working with children from bilingual or
multilingual families need to be aware of strategies to teach communication skills
to these children.
6
make school
make sense
Without adequate support and appropriate provision, children with autism can find it
difficult to make friends, to participate in class and to integrate into school life. At worst,
they are bullied, excluded from school, or both. There are an estimated 11,000 children
with autism from black and minority ethnic (BME) backgrounds in England and Wales2.
In a recent study, published in the British Medical Journal3, researchers found that
while the social and economic needs of all families with disabled children are high and
remain largely unmet, provision is particularly inadequate for children with an autistic
spectrum disorder (ASD) and for disabled children from minority ethnic families.
Children with an ASD who are also from a minority ethnic background may miss out
on account of their autism and their ethnicity.
“Sometimes I feel doubly discriminated, firstly, because of the disability and then
because of our skin colour.”4
“I really do feel that ethnicity has a significant impact on the level and type of
education given to my child. There appeared to be more of a belief that my child
was bad as opposed to having special needs…I think that Black children are
more than doubly penalised within the education system because their special
educational needs causes them to have difficulty accessing appropriate
education, because they are Black, and because they are boys. This hinders
them in achieving what they should in today’s educational system.”
In 2006, The National Autistic Society (NAS) carried out the largest ever survey on
autism and education in the UK. This provided the evidence base for our make school
make sense campaign to improve educational provision for children with autism. Our
survey showed that local provision is often limited, teachers’ training in autism is
inadequate and that families have to struggle to access support their children are
entitled to. Over 40% of the children in our survey had been bullied at school, and
20% had been excluded from school, often due to teachers’ lack of autism
awareness. These statistics are shocking, but sadly, the experiences of families who
described their child as belonging to a background other than White British were
consistently worse than the average.
2This figure is based on applying the current accepted prevalence rate for autism of 1 in 100 to the
number of children (aged five to 17) from BME communities according to the 2001 Census.
3Sloper, T. and Beresford, B. (2006). Families with disabled children. British medical journal, 333.
4The quotes in this report are from parents of children with an ASD who are from BME groups. They are
taken from surveys conducted by the NAS as part of the make school make sense campaign collected
between September and December 2006 and from qualitative interviews conducted with families from
BME communities from June 2004 to July 2005.
7
Despite the plethora of research on the prevalence of autism, there has been very little
research carried out into the experiences of non-White families and there are almost
no specific support services targeting these groups. In this report, we reveal that
children with autism from BME families experience disproportionate discrimination and
disadvantage. We call on the Government, the Welsh Assembly Government and local
authorities to develop culturally specific services, where appropriate, and to ensure
that existing assistance at school is accessible to – and supports – children with
autism from a BME background.
The numbers debate
The majority of epidemiological studies on autism do not report or analyse data
regarding ethnic background, and those that do produce an inconsistent picture of
prevalence amongst different ethnic groups. Some reveal a higher incidence of autism5,
others a reduced incidence6and further studies show no difference at all in incidence
among different ethnic populations7. The Pupil Level Annual School Censuses (PLASC)8
in 20069(see graph 1) shows substantial variation in the percentage of pupils with an
ASD amongst different ethnic groups and between primary and secondary school.
White
White British
Irish
*Gypsy/Roma
Any other White
background
Mixed
White & Black
Caribbean
White & Black African
White & Asian
Any other Mixed
background
Asian
Indian
Pakistani
Bangladeshi
Any other Asian
background
Black
Black Caribbean
Black African
Any other Black
background
Chinese
Any other
ethnic group
0.0
0.1
0.2
0.3
0.4
0.5
0.6
0.7
Primary % of total pupils
Secondary % of total pupils
Ethnicity
%
*The lack of data for Gypsy/Roma at secondary level is because
there were less than five pupils from this group.
% of pupils in maintained schools with ASD
by ethnicity (2006)
5 Goodman, R. and Richards, H. (1995). Child and adolescent psychiatric presentation of second-
generation Afro-Caribbean's in Britain, British journal of psychiatry, 167, pp362-369; Dyches, Wilder,
Sudweeks, Obiakor and Algozzine (2004). Journal of autism and developmental disorders,34(2)
6Croen, L. A., Grether, J. K., and Selvin, S. (2002). Descriptive epidemiology of autism in a California
population: who is at risk? Journal of autism and developmental disorders, 32(3), pp217-224.
7Fombonne, E. et al. (2001). Prevalence of developmental disorders in the Bristish nationwide survey of
child mental health. Journal of the American academy of child and adolescent psychiatry, 40, pp820-827.
8Which identifies the main or ‘primary’ need of pupils who are supported at school action plus and those
pupils with a statement of special educational needs (SEN).
9In response to a parliamentary question from Janet Dean, MP. Number 110589. 1 February 2007.
Graph 1
8
The reasons for variations in the PLASC
data are difficult to ascertain and there are
also significant limitations to the data. The
small numbers of pupils from certain ethnic
groups means that the disability of one or
two children may misrepresent prevalence
within the community as a whole. The data
only takes account of pupils whose main or
primary need is an ASD. It therefore
excludes children who have multiple needs,
which may include an ASD. For example,
some children’s primary need is a moderate
learning disability (MLD) but they also have an ASD. Furthermore, PLASC only
includes data about children who are on School Action Plus10 or have a statement of
special educational needs (SEN). This means that it may miss children with high-
functioning autism or Asperger syndrome who do not qualify for School Action Plus
or a statement, or children whose parents have not fought for additional support.
Additional limitations to the PLASC data and other studies on autism prevalence and
ethnicity include variation in the diagnostic criteria and tools used by different
professionals and in different areas which can lead to variations in prevalence rates.
Problems with the recruitment processes for research studies, which result in fewer
BME participants, have also been identified.
It is imperative that the limitations of previous research studies are addressed.
Variations in the numbers of pupils with an ASD in different communities, between
years and between primary and secondary cohorts must be thoroughly explored.
Do they reflect real differences in incidence of ASD between ethnic groups? Are they
symptoms of lower rates of diagnosis or children from some communities having
other primary needs? Do they relate to issues surrounding the diagnostic process,
including lower take-up of health services by some communities? Or are they a result
of low cultural awareness of ASD, cultural or linguistic barriers, direct discrimination
or a combination of these factors? The PLASC data only recorded ASDs as a
separate category from 2004 so it will be interesting to analyse ongoing trends in
prevalence. In addition, the Government and Welsh Assembly Government should
commission further research into the prevalence of autism amongst minority ethnic
groups in England and Wales. Local authorities should also record the number of
BME families who access autism support services if they do not already do so.
Perceptions of autism in different communities
Research exploring the experiences of families from BME communities with a child
with autism living in the UK or elsewhere has also been neglected. The findings of
our Black and Minority Ethnic (BME) Communities Project and information gathered
for this report highlight the limited understanding of autism in some minority ethnic
communities. They also confirm that autism is perceived differently by different
communities and sometimes by different members from the same community. This
has an impact on the way both parents and professionals respond to a child with
autism from a minority ethnic background. It can mean that access to support is
delayed and that children do not receive the level of support they need. There is
widespread evidence of the importance of early intervention in improving outcomes
10 Used within schools to describe the additional support provided to children with SEN.
9
for children with autism and their families11. Missing out on support at an early age
has a significant negative impact on the development of the child as well as an
economic impact for the local authority, which may have to provide more complex
and expensive support at a later stage.
Some of the developmental milestones
used to diagnose ASD are culture-specific.
This means that children from BME
communities may miss out on a diagnosis
or receive a late diagnosis because their
families do not recognise differences in their
development that are due to an ASD. For
example, not making direct eye contact,
one of the diagnostic criteria for ASD, is
viewed by some people as a sign of
respect. In some cultures it is accepted as
‘normal’ if boys do not develop speech until
three or four years of age, while in others children are expected to start speaking after
two years of age. Stigma around disability can be particularly acute in certain minority
ethnic groups and this may result in the reluctance of families to seek a diagnosis for
their child. Some languages do not have a word for autism and many interpreters
substitute terms that mean ‘mental health’ or ‘learning disability’, which causes
confusion for families. In addition, a lack of early take-up of healthcare and other
services among communities for whom English is an additional language and other
communities, including travellers, may reduce opportunities for learning about autism
and for accessing a timely diagnosis12.
“When Ope approached his third birthday, one of my friends asked me
whether I thought Ope was autistic. I had never heard this word before and
so mistook this for artistic.”
“Within the African community some believe that having a child with a disability
is a generational curse, which is similar to some other cultural communities.
I feel that there needs to be more work done with black and minority ethnic
communities to help them help themselves. The relevant agencies need to
‘own’ some of this work.” (Parent from the African community)
The cultural specificity of key developmental milestones and social communication
indicators can also affect the diagnostic process. As such, when families finally reach
diagnosis stage, professionals’ lack of cultural awareness can result in an incorrect
analysis. The lower numbers of children with autism in certain ethnic groups may be
because of difficulties disentangling learning difficulties from issues associated with
English as an Additional Language (EAL)13 and/or because professionals fail to
appreciate the need to make a distinction. If for either of these reasons autism is not
identified when it should be, children miss out on the support they need.
11 Smith, V. K. and Dillenbeck, A. (2006). Developing and implementing early intervention plans for
children with autism spectrum disorders. Seminars in speech and language, 27(1), pp10-20; Turner, L.M.
et al (2006). Follow-up of children with autism spectrum disorders from age 2 to age 9. Autism, 10(3),
pp243-265
12 Lindsay, G., Pather, S., and Strang, S. (2006). Special educational needs and ethnicity: issues of over
and under representation. University of Warwick.
13 Lindsay, G., Pather, S., and Strang, S. (2006). Special educational needs and ethnicity: issues of over
and under representation. University of Warwick.
10
“I feel that within the Asian community disability stands out like a sore thumb
and the community tends to feel sorry for the family...our experiences have
made me realise that there needs to be some education within the
community about the disability. Different services need to invest in this
process so that people can get some support from their cultural groups.”
The support void
If a family successfully navigates the many barriers
already outlined and manages to get a diagnosis for
their child, they are often then faced with a support
void. The National Autistic Society provides
outreach services in minority ethnic communities
within London to raise awareness of – and provide
information about – autism. However, there are still
very few projects or services of this nature in
England or Wales. Most of the services that do
exist are co-ordinated by the voluntary sector with
little support available from statutory services. The
Early Support pack, funded by the Department for
Education and Skills (DfES)14, is an extremely useful
resource for parents with young children who have
received a diagnosis of autism, but it is not available in any language other than
English or in other formats, such as language tapes. There have been many calls
for this resource to be made available in community languages but as yet the DfES
has not acted upon them.
There are also many reasons why families from minority ethnic families may find it
difficult to access generic support for themselves or for their children. Language
barriers inhibit some people’s understanding of the services to which they are
entitled. Other people may not access support due to fear of discrimination or
racism, on the basis of personal experiences or on hearsay. In some communities
disability and autism are seen as private matters that should be coped with within
the family. BME families who took part in our research also mentioned a lack of
culturally appropriate services or services that value diversity.
Professionals who work in mainstream services may assume that services are open
and accessible to people from all backgrounds and often lack understanding of the
additional barriers faced by families from BME backgrounds. As a result, they do
not make enough effort to reach out to them and provide the required support. The
NAS’s BME Communities Project runs autism awareness and cultural awareness
training to generic and autism-specific professionals to equip them with the skills
and confidence necessary to meet the needs of BME families. This type of
innovative project should be funded and rolled out so that families across England
and Wales can benefit.
14 Early support information for parents. Autistic spectrum disorders (ASDs) and related conditions.
(2006). London: DfES.
11
Recommendations
The lack of research about the experiences of families from BME communities
in the UK with a child with autism must be filled.
Research should be commissioned into the impact of cultural heritage on the
diagnostic process. This should include investigation of the relationship
between children’s EAL status and the professional estimation of the nature
and severity of their needs.
Local authorities should monitor the number of children in their area with
autism, including their ethnic background, and plan services accordingly.
Local authorities should develop culturally relevant autism information and
outreach for BME communities to increase understanding, reduce the referral
delay and support families pre and post diagnosis.
The DfES should produce and distribute the Early Support pack in community
languages and in appropriate formats, such as language tapes.
Local authorities, Primary Care Trusts (PCTs) and Local Health Boards (LHBs)
must ensure that generic autism services are accessible to families from all
ethnic backgrounds.
12
The right school
for every child
Children with autism from all communities are individuals and the needs and
strengths of one child will not be the same as another. Although the education
choices for all families of children with autism are limited, our survey revealed that for
families of children from black and minority (BME) communities they are even more
limited. Just 31% of parents of BME children felt as if they had a choice of school for
their child. This figure compares to 41% of parents of White British children.
“It was a big fight. The school of my choice was rejected, as it was a private
school. I lost a tribunal case. The school that my son attends now is a borough
residential school. To obtain a place even in this school was a struggle (I had
to get Directors of Social Services, Education and the MP involved). The
reason for the struggle was residential schools cost more money even though
the school meets my son’s needs to some extent.”
“I feel that I had to learn the law and Government policy and constantly
complain and argue about his needs and repeatedly explain what autism is
and how it would impact on school life. Education officers’ first priority is
money rather than what is best for your child. They have an attitude that you
should be grateful for what you get. The greatest barrier I experienced was the
attitude that ‘if the child needs this much support, why are they not going to a
special school?’”
Many parents and carers of children with
autism talk about having had to fight for an
appropriate education for their child. This can
be more difficult for some BME families for
reasons including language difficulties, lower
confidence, limited understanding of the
education system, a fear of being ridiculed or
perceived as difficult, or a combination of
these factors. An evaluation of the special
educational needs (SEN) Parent Partnership
Services in England15, statutory services that
offer advice, information and support to
parents of children with SEN, revealed that many local authorities offer limited
support for parents for whom English is not their first language. Fewer than half of
15 Rogers, R. et al. (2006). Evaluation of the special educational needs parent partnership services in
England. Research report RR. Nottingham: DfES.
13
Parent Partnership Services used community languages in leaflets. Although about
two thirds of Parent Partnership Services made translators available, as the authors
point out, this does not address the problem of making initial contact with parents
who do not have a good understanding of English. This issue can only be addressed
by increasing understanding of autism within BME communities and amongst
professionals who work for culturally specific outreach services. Local authorities must
also respond by providing additional information and support for BME families to help
them understand their rights and entitlements and to support them through the
statutory process if this becomes necessary.
“Some parents are more active and will push for services for their children.
We are not like that; maybe that makes it more difficult for our children.”
“It took nearly two years because at his
first school they dismissed that there was
anything wrong in the first place. The
school had many Polish children who
couldn’t speak English at all (my son was
born in the UK) and they claimed it was
‘not uncommon for children of foreign
parents to have difficulty with reading and
writing’. Our son’s father is British and
was born in the UK. There was no reason
for our son to be the worst at reading and
writing in his class.”
“My experience with the local authority has been one of waiting and fighting.”
“If my son could go to the school of my choice, then his potentials may have
been better taken care of.”
Bullying
41% of children from BME communities in our survey had been bullied, and
many parents commented on the devastating impact of bullying on their child’s
educational progress, relationships and mental health. Because of the nature of the
condition, children with autism may not understand the motives of other children or
have the social skills to handle difficult situations. This can mean they are easily led
or provoked by bullies, which further compounds their difficulties with social
communication and interaction.
“My son was bullied at school continually. However, he was the one punished, it
was easy for him to be ‘set up’ and [his] peer group encouraged him to jump
out of windows etc. He was told he was ‘rude’ by staff because of his abrupt
manner of speaking and because he ‘argued’. Being very intelligent, he often
challenged staff and was punished very much with detentions and being
shouted at.”
“My child has been bullied on a number of occasions. His first school really did
not do much until I intervened by writing and requesting the anti-bullying policy.
They suggested that the incidents were self-inflicted.”
14
“We’ve had to leave our old school because my son was bullied there for ten
months and came home with horrific bruises and was hysterical in the
mornings because he didn’t want to go back to that school. At first they
recorded the injuries, but explained it away by ‘accidents’. But no matter how
many times we’ve complained, they failed to stop the bullying. He told
teachers about the bullying nearly every time it happened, but he was either
fobbed off or told by the Acting Headmistress that he was lying. After I came
to pick him up with blood trickling down his chin (because he was chased and
fell hitting his chin on the sharp edge of a low concrete wall), he was hysterical
and said the teachers wouldn’t listen to him. When I went back to the school,
the Headmistress made all sorts of excuses, concluded it was his fault, anyway
– he shouldn’t have been running (he’s only six), then stood over him as he sat
down on the floor sucking his thumb and rocking and shouted: ‘You’re lying,
aren’t you? You’ve been making all this up, haven’t you?’”
“She gets teased at school. She doesn’t communicate this to me at the time.”
One parent’s quote reveals an experience that we hear from families on a
regular basis:
“There has been a threat of exclusion from the current school because he bit a
girl who had bullied him.”
Because of their communication difficulties,
children with autism who are bullied often
struggle to explain that bullying has taken
place. Out of frustration and the ongoing
distress caused particularly by repetitive
bullying, they may display challenging
behaviour. In many instances, schools
respond by excluding the child with autism,
without exploring the reasons behind the
challenging behaviour, even where it is
uncharacteristic. However, there are
examples of excellent practice where schools
have successfully tackled bullying – be it on
the basis of ethnicity, disability or another reason – and put strategies in place to
protect all children. For example, some schools address children’s difficulties at
lunchtime by organising lunchtime clubs or allowing children with an ASD to go to
the library or to use a computer.
Bullying on the basis of disability, race or both is unacceptable and must be
addressed by better training for school staff and by ensuring that the interests of
children with autism and children from BME backgrounds are explicitly included
within schools’ anti-bullying policies.
Exclusions
In our survey, 24% of BME children had been excluded from school (compared to
20% for the overall sample). In addition, just 22% of parents who describe
themselves as belonging to a minority community said that their local authority
provided support when the child was excluded compared to 29% of White British
families16. Data on fixed term exclusions for pupils with SEN in England in 2004-05
15
reveals substantial variation between ethnic groups, ranging from 11% for Asian
pupils at secondary level to nearly 38% for mixed race pupils17. Further analysis of
the reasons for these differences must be prioritised.
“My son missed several years of school, but it was never officially described
as exclusion although it was often an implied threat. I fought very hard for the
school to recognise that my son was a good child but was very afraid of the
school. The school felt there were ‘other issues’ and the educational
psychologist report suggested ‘something in his past’.”
“He was once excluded because his one-to-one was off sick when he first
started a mixed special needs day school chosen by the local authority.
I raised hell and the NAS also helped me with legal points. This was
never repeated.”
The disproportionate rate of permanent
exclusions for some minority ethnic groups
has been highly publicised over recent years
and a number of initiatives put in place to
address it. The Government, Welsh Assembly
Government and local authorities should
attach the same seriousness to the rate of
exclusion for children with autism from BME
backgrounds or else risk the further
marginalisation of these vulnerable children,
and significant additional costs in finding an
alternative placement for them.
Recommendations
Education choices for all families of children with autism are limited but our
survey reveals that the choices for those families from BME communities are
even more so. It is essential that local authorities work to ensure that every child
with autism has local access to a diverse range of mainstream and specialised
educational provision which can meet the child’s individual needs.
Education professionals should raise awareness and provide information and
support in a range of community languages and formats to families from BME
communities. This information should cover the education system, their rights
and entitlements and choosing a school.
Bullying on the basis of disability, race or both must be addressed by better
training for school staff and by ensuring that the interests of children with autism
and children from BME backgrounds are explicitly included within schools’ anti-
bullying policies.
The Government and Welsh Assembly Government must prioritise analysis of the
reasons for differences between ethnic groups in the exclusion rates of children
with SEN.
16 The survey did not cover the reasons for exclusion.
17 Number of fixed period exclusions by ethnic group and special education needs in maintained
primary and secondary schools 2003-04 and 2004-05. Response to a parliamentary question from
Janet Dean, MP. Number 110588. 1 February 2007.
16
The right training
for every teacher
With an estimated prevalence rate of 1 in 100 children18, all schools should expect to
teach children with autism and have the understanding, resources and specialist
support to do so. At present, teachers do not receive any compulsory autism training
and only 31% of black and minority ethnic (BME) families in our survey thought that
teachers had received the professional training they need to meet the special needs
of children with autism.
The National Autistic Society (NAS) is pleased that the Government has stated that
all new special educational needs co-ordinators (SENCOs) in England will receive
autism training. However, there is currently no such commitment in Wales and no
guarantee that existing SENCOs will receive autism training. The commitment by the
Government to produce a teacher pack on autism for all schools in England, a
recommendation of the make school make sense campaign, is also welcome. This
pack will provide a useful basic resource for teachers with little or no understanding
or experience of autism. However, in order to meet their duties under the Special
Educational Needs and Disability Act (SENDA) 2001 and Disability Discrimination Act
(DDA) 1995 and 2005 to ensure that they do not treat disabled pupils ‘less
favourably’ because of their disability, all teachers must receive comprehensive
training to help them understand and adjust their approach in working with children
with autism.
Our survey reveals that BME families rate the
quality of training of all professionals in their
child’s school at least 10% lower than their
White British counterparts. BME families rate
whole school understanding of autism as
21% lower than their White British
counterparts. Parents from all minority ethnic
groups were generally less satisfied with the
professional understanding of autism in non
ASD-specific environments and particularly at
secondary level. The reasons for lower levels
of satisfaction with teacher training by BME
families are not clear. They may be the result
of language difficulties, lack of understanding of the education system, cultural
differences in expectations of teaching staff, or a combination of these factors and
others. It is vital that professionals who work with children with autism from minority
18 The National Autistic Society (2007).
17
ethnic communities receive training in cultural awareness and its impact on
understanding disabilities so that they are able to support children with autism and
can adapt the curriculum to meet their needs if required. The Government and Welsh
Assembly Government should ensure that initial teacher training and guidance to
schools includes information about the potential for some children to be
discriminated against on the basis of their disability and their ethnicity.
School staff must also have the skills to engage parents and carers in their child’s
education. Some schools employ staff to work specifically with children from BME
backgrounds and their families. It is important that these workers reach out to
children with disabilities, including autism, and share their own expertise with staff
throughout the school.
“My son left after two weeks because
of the lack of support. He has since
returned and explained to the staff what
Asperger syndrome is about and help
he might need.”
“My daughter missed the school dinner
bell and locked herself in the loo in
distress. The teacher’s response was
‘You twit, why didn’t you ask the dinner
lady for help?’”
“I feel the level of ignorance in schools is shameful.”
“If one single change was to be made to the teaching and support of my son,
it would be to educate the staff and the special needs officers at the local
authority who at one stage suggested my son might have a ‘chip on his
shoulder’ about being Black. I fled this meeting in tears and never received the
minutes, hardly surprising!”
“All the other children’s parents had a meeting with staff before their children
started at the school. We never had any of these meetings. No one tells us
anything and we are hoping to get some strategies. When they had a parents’
evening we asked for an interpreter, but the school did not provide one and I
have no idea what was explained.”
“At his new school, with all the goodwill in the world, without real training in
autism they are not very effective.”
As some of the quotes from parents reveal, there are staff and whole schools whose
understanding of autism is excellent.
“I am satisfied with the support my child receives because he has a language
and communication support assistant who goes in regularly to brief his
teaching assistant and teacher on what support to offer. What he does in
school is also sent home for him to practise with me and whenever I ask for
advice or materials to help my son at home it has always been sent.”
18
“My child’s school has been proactive in gaining support and training for all
staff. Not just teaching staff but also support staff from the caretaker to dinner
ladies and office staff so all employees at the school are aware of his needs
and how to interact with my child.”
“At the moment we have an understanding teacher, but I can’t guarantee that
in the future.”
As part of the make school make sense campaign, The National Autistic Society
launched a ‘make school make sense heroes’ initiative where we encouraged young
people and their families to nominate individuals who have made a positive difference
to their experience at school. The many nominations we received reveal the
dedication of individuals from across the UK. However, as one of the quotes in this
report illustrates, many parents fear that if they do find an understanding teacher they
can’t rely on this level of understanding in the staff that will teach their child in the
future. It is vital that good practice becomes standard practice in schools across
England and Wales.
Recommendations
Training in autism should be provided for professionals working with families
from BME communities in schools, early years settings, outreach services and
other services.
All professionals in schools should receive cultural awareness training so that
they are able to meet the needs of diverse communities.
19
The right approach
in every school
Speech and language therapy (SALT)
SALT is an important intervention for all children with autism, who have difficulty with
both verbal and non-verbal communication. However, there can be particular issues
in teaching communication to children where English is an additional language,
particularly where word order of their first language differs from English. 51% of
children from black and minority ethnic (BME) families in our survey receive SALT in
some form but a further 28% of parents believe that their children would benefit from
SALT but are not able to access it. As has already been discussed, if children for
whom English is an additional language do not receive a diagnosis because of their
EAL status, they miss out on necessary interventions, including SALT, further
disadvantaging their progress at school.
“My daughter needs speech therapy but as the speech therapist is fully
booked she will not get this for another year.”
Michael’s story*
Michael is ten and describes his ethnicity as Ghanaian. He goes to a mixed
special school with an autism unit. He likes computers, and looking at street
and tube maps.
“My name is Michael and I go to a special school. I go to a school in a car
along with two others. The driver comes to pick me up. It can be a bit
confusing when I get into the car, as I am never sure where I should be sitting.
At school I have five friends. I like to listen to music with friends. Play cars on
the floor. I like playing.
At school we do different things that are on our schedule – ICT, working,
choosing, computer, see street maps, lunch, playtime, relaxation, whiteboard,
playtime, snack, choosing, dancing and park, and home time. I also do drama
with Paula.
At school I have a helper who helps me. She helps me in tying my laces. I like
her. I can also ask for help from my teacher.
When I grow up I want to work on Thames tunnel and be an engineer on the
Metropolitan line, or East London line.”
* Michael is a pseudonym.
Graph 2
20
Culturally sensitive and
autism-friendly schools
The factors we have addressed in this report –
from parental understanding of autism to
professionals’ cultural awareness when dealing
with BME families to the development of
appropriate services – are all essential to the
cultivation of culturally sensitive autism-friendly
environments. Given the issues we have already
explored, it will not come as a surprise that
parents from BME communities were significantly less satisfied with their child's
academic and social progress compared to their White British counterparts. They were
also less satisfied with whether adequate staffing and resources were in place (see
graph 2 below).
“I really hope that my daughter gets the same number of hours support in the
coming years. The local authority should not deprive children with special needs
of help. This is their future and they should be helped.”
My child
has made
improvements
to social and
communication
skills
Adequate
resources and
staffing are
in place
Satisfaction with
provision Satisfaction with
communication
with school
My child has
made good
academic
progess
My child is
happy at school
0
0.2
0.4
0.6
0.8
1.0
BME group
Average
Responses
Mean score
Recommendations
Schools and local authorities should monitor the experiences of BME families to
assess and address differences in satisfaction levels.
The Government and Welsh Assembly Government should resource and monitor
the implementation of SALT actions in the National Service Framework for children,
young people and maternity services in England and in Wales and ensure that
children from BME backgrounds can and do access this support if they need it.
Speech and language therapists working with children from bilingual or
multilingual families need to be aware of strategies to teach communication skills
to these children.
Disparity between the experiences of White British children
and children from Black or minority ethnic backgrounds
21
Good practice
Some schools and local authorities already provide excellent support to children with
autism from black and minority ethnic (BME) communities. The examples below, and
others like them, should be replicated across England and Wales.
Home-school communication
“The bilingual worker at the school has been very helpful. If I don’t understand
anything that has been written in the communication book, I ring her and she
explains it to me in my language.”
Parent
“We are aware that students in our school come from diverse backgrounds. Parents
of some of these children may have limited English so we send all our letters to the
parents in their own community languages. We have got all the regular letters, such
as letters regarding Christmas plays, annual reviews and outings, translated into the
main languages spoken by the children in our school. This makes it easy for the
school staff to send the required letter.”
Deputy Head in a special school
“When Anna* started in the school we were
aware that we were unable to talk to her
mother on a regular basis. We felt that her
mother was being denied an opportunity just
because she speaks Turkish. We arranged a
meeting with her using an interpreter. The
class teacher, support staff, and the mother
have all found the meeting very useful. For
the first time the mother had an opportunity
to really understand what we are doing in the
school, and from our point of view we had a
chance to check about Anna’s behaviour and
needs at home.”
SENCO at a primary school
Raising awareness
A special school in London was aware of the varied needs of the families of children
attending the school from different communities. To ensure that all the parents have
equal access to their parents’ training course and support groups, they use
interpreters. They also run a range of groups for parents from different ethnic
backgrounds and provide opportunities for networking across the cultures. Their
women-only group is popular with the local Somali and Bengali community as well
as some White mothers.
“We were aware that the school was not as successful in involving fathers in autism
training courses. We organised a couple of training sessions just for fathers which
were delivered on a Saturday by two male presenters. This was greatly appreciated
by the fathers who had a chance to understand more about the condition.”
Teacher in a special school
* Anna is a pseudonym.
22
Bradford District Care Trust conducted research into understanding of autistic
spectrum disorder (ASD) in the local Asian communities. This led to the production of
a short video about ASD in the three main local Asian languages and English. The
video provides a brief introduction to autism, followed by information about local
services. It has proved particularly useful for families who have literacy issues.
Making adjustments
Alex* is a student at a large, local further education college. He has moderate
learning difficulties and an ASD that is not formally diagnosed. He is Muslim by
religion. At college, Alex has presented a number of behaviours that are deemed
inappropriate on campus by college managers. Amongst these is a need to cleanse
himself by strip washing several times during the day making use of public toilet
cubicles and wash basins on campus.
To address this behaviour, Alex was offered one-to-one support by the NAS. Initially
this was provided by female staff members but recently a male Muslim member of
staff has been supporting him and this is working well.
In addressing Alex’s behaviours on campus, several strategies have been adopted.
Alex is still allowed to undertake his ritual cleansing but is directed towards using the
larger ‘disabled’ toilets which have a water supply within the cubicle offering him
greater privacy. A TEACCH schedule19 has been put into place, outlining his day at
college and including regular visits to the toilet to enable cleansing to take place –
usually prior to the end of a class before other students go to a break or lunch. Alex
has also been given short descriptive Social Stories™20 to follow, promoting socially
acceptable behaviours on campus. Staff working with Alex will praise him for
following both the Social Stories and TEACCH timetable to reinforce acceptable
behaviour and boost Alex’s self-esteem.
“Alex completed the ‘Learning for Life’ course successfully, and will be returning to
college in the new academic year, on a new course.”
Further Education Co-ordinator
“Our primary school is located in the centre of an authority where there is a high
percentage of minority ethnic pupils. Over 90% of the children who attend the school
are Asian and there are a number of children diagnosed with autism. This, coupled
with the communication issues related to English as a second or other language, has
challenged the school to look at its systems of communication throughout all classes
and within the whole environment. To this end, Boardmaker symbols21 are used in
the entrance, classrooms and elsewhere. The teachers have welcomed advice from
the local authority’s special educational needs advisory teachers and have had
bespoke training from the SEN teacher with responsibility for ASD support.
19 Visual timetables using picture, photographs or words to help the student understand what is expected
in a situation and what will happen next.
20 Stories written for a person with autism explaining in words and pictures, step by step, what will happen
in situations where they may feel anxious and how they should cope with situations they find difficult.
21 A type of visual communication tool.
* Alex is a pseudonym.
23
The communication observed within the
classrooms, the use of visual schedules and
clear spoken language along with the
structure and routine built into the day enable
the children on the autistic spectrum and
their peers to achieve success. Interventions
used to support the needs of children on the
autistic spectrum are recognised as good
practice for all children and make the school
accessible for inclusion.”
Teacher at a mainstream primary
school in Greater Manchester
Culturally sensitive schools
“We are conscious that as part of religious education we need to give all our
students a broad experience so that they feel that their religion is acknowledged by
the school. We feel this will help our students to cope with differences which a
number of them find difficult. It also helps them to learn the routine for going to their
religious place, thereby helping them to be integrated into their community. We
organise regular visits to all the religious places in the local area. This has helped the
students as some of them are now aware of how to behave in the different religious
places, including their own. A number of parents feel confident to take their children
to their places of worship now.”
Deputy Head
“We organise cultural events showcasing the culture of various parts of the world.
This reflects the diversity of the students in our school, and provides them with an
opportunity to explore their own culture as well as others. We also try to include this
diversity throughout our curriculum. For example, in food and technology we cook
food from different parts of the world and not just the traditional English recipes. A
number of people believe that children with autism are not aware of their cultural
heritage, the response we get from our students when it is food from their
communities tells us a different story.”
Inclusion officer in a secondary school
Taking responsibility
Schools in one London borough have a big proportion of children from minority
ethnic backgrounds. The special educational needs (SEN) department was aware
that these numbers were not being reflected in the number of children with an ASD
having an SEN statement. The department formed a professional group to
investigate any patterns on the basis of ethnicity and social background which need
to be addressed to ensure that all families have equal access to get appropriate
support for their children with an ASD.
24
Time to end the
double discrimination
Children with autism from black and minority (BME) communities
experience discrimination on two fronts – their disability and
their ethnicity. This isolates them from the education system that
should provide opportunities for success. Some excellent
practice exists but sadly it is not widespread. The neglect of
BME families by researchers, professionals and service
providers is shameful and must be addressed with urgency.
Educational provision for all children with autism is inadequate,
but for children from BME communities it is even worse. We
must make school make sense for all children with autism.
About The National Autistic
Society (NAS)
The NAS exists to champion the rights and interests of all people with
autism and aims to provide individuals with autism and their families with
help, support and services that they can readily access, trust and rely upon
and which make a positive difference to their lives.
Autism Helpline
Confidential information, advice and support
Open Monday – Friday, 10am – 4pm
Tel: 0845 070 4004
Minicom: 0845 070 4003
Email: autismhelpline@nas.org.uk
Some of our UK-wide services, such as the Autism Helpline, have access to
a telephone-based interpreting service. Through this service we can provide
information in over 150 languages. However, callers need to speak in English
at first to let staff know their name, contact number, and preferred language.
After taking these details, we will be able to call you back with an interpreter.
The NAS provides a range of its publications in languages other than
English. For details visit www.autism.org.uk/pubs/leaflets and
www.autism.org.uk/languages or call 0845 070 4004.
Advocacy for Education Service
The Advocacy for Education Service provides advice and advocacy on
special education needs provision and entitlements for families whose
children have an autistic spectrum disorder.
Tel: 0845 070 4002
Email: advocacy@nas.org.uk
Website: www.autism.org.uk/advocacy
The National Autistic Society
Head Office
393 City Road
London
EC1V 1NG
Tel: 020 7833 2299
www.autism.org.uk
Autism Helpline
Confidential information, advice and support
Open Monday – Friday, 10am – 4pm
Tel: 0845 070 4004
Minicom: 0845 070 4003
Email: helpline@nas.org.uk
© The National Autistic Society 2007
ISBN 1-905722-27-3 978-1-905722-27-3
The National Autistic Society is a company limited by guarantee
Registered in England No. 1205298
Registered office: 393 City Road, London EC1V 1NG
Registered as a Charity No 269425
... In the FoP assignment I explored how professionals working in special and mainstream schools have been challenged by the need to develop competences that may not previously have been considered within the traditional roots of their profession, such as autismspecific approaches and interventions. Further gaps in teacher knowledge have also emerged with an increase in autism diagnoses amongst the minority ethnic population in the UK that has prompted a demand for culturally sensitive approaches to teaching autistic children (Corbett and Perepa, 2007). With culturally competent models of professional practice being developed to promote transcultural care in the health and social work professions, I considered why the establishment of similar models had been largely overlooked in educational practice and whether there was the potential for them to be implemented within the field of special education. ...
... The emergence of research on minority ethnic families' experiences of caring for an autistic child is a fairly recent phenomenon in the United Kingdom (UK). Increasingly researchers have sought to gain a deeper understanding of the particular challenges experienced by families and highlighted how many families have felt marginalised by professionals because of the cultural, social and religious influences relating to their perceptions of autism, language barriers and accessing systems of support (Corbett and Perepa, 2007;Doig, 2012;Gilligan, 2013). Overcoming misunderstandings and avoiding essentialism about autism and ethnicity were a key driver in wanting to undertake this research with minority ethnic families. ...
... Despite the cost of healthcare in the UK being markedly different, similar findings were noted in the UK-based National Autistic Society (NAS) report, Missing Out? (Corbett and Perepa, 2007) on minority ethnic families' experiences of gaining an autism diagnosis for their child. Parents reported that the social stigma associated with certain behaviours and cultural differences in developmental expectations, had influenced their decision not to seek an earlier diagnosis. ...
Conference Paper
In the UK there has been a marked increase in children from minority ethnic families receiving an autism diagnosis but there continues to be a dearth in research that has explored the diversity of families’ lived experiences. The research sought to address this under-representation by using a transcultural approach to understand how families are drawing on multiple cultural influences in response to having an autistic child. Eleven parents from nine families who lived in one London borough were interviewed using a non-directive narrative approach. The families included two parents who were born in the UK, five who migrated to the UK as children and four who came to the UK as adults. All the families had a child with autism aged between four and seventeen years old, who attended either a special school or a mainstream school in the same London borough. Combining transculturalism with a narrative interview approach made it possible to pay attention to the ways in which families’ lives are transformed when they have an autistic child, how parents develop multiple identities in their interactions with professionals and family members across different social and cultural contexts and the impact this has on their sense of belonging to the community and networks of support. Analysing the interviews followed a case-based approach with themes examined within and across all cases. A thematic analysis of the families’ transcultural experiences showed that there were commonalities in their experiences of parenting children with autism as well as distinct and relevant cultural values and resources which influenced their individual responses to having an autistic child. The families wanted teachers in mainstream schools and those in their community to have more understanding and knowledge about how autism affected their lives and positive recognition of the solution-focused strategies that they were using to advocate for their autistic child’s healthcare and education. The findings from this research supported the development of a transcultural model that will be of value in developing culturally responsive pedagogical practice in autism education. The recommendations are that there is a need to further address culture and ethnicity in research on autism and special education, encouraging teachers to think about how they work with autistic children and the social and cultural realities that are an essential aspect of families’ transcultural lives.
... An increased diagnosis and prevalence of autism among Black children in comparison to Asian and White children suggest more contact and a heightened awareness of autism among the Black community. Previous research has focused on the prevalence of autism among people of Asian background and identified multiple factors that impacted the recorded prevalence of autism such as language difficulties for non-English speaking parents (Corbett and Perepa, 2007) and late access and take up of services due to cultural differences, religious beliefs and family traditions Heer et al., 2012). These were factors that explained the limited representation of ASD among Asians. ...
... Research evidence suggests that minority ethnic parents have been noted for limited knowledge, low ASD prevalence (due to under diagnosis) and poor attitudes to autism (Munroe et al., 2016;Fox et al., 2017;Slade, 2014;Selman, 2017;Chandran et al., 2019;Lindsay et al., 2006). Thus, findings from this study support the idea that knowledge about autism is an important component of effective interventions towards reducing stigma and increasing positive attitudes to people with ASD among Asian ethnic groups (Corbett and Perepa, 2007;Heer et al., 2012). ...
Article
Purpose The increase in autism prevalence and presentation in the media suggests a rise in public awareness. This paper aims to explore what factors (contact, knowledge and ethnicity) may be associated to positive attitudes towards individuals with autism spectrum disorder (ASD). Design/methodology/approach An online survey examined contact with and knowledge of ASD among Black, Asian and White ethnic groups to predict public attitudes to people with ASD. Findings In multiple regression models, the results suggested that the level of contact predicts positive attitudes towards autism when demographic factors were accounted. The level of knowledge about autism were significantly associated to attitudes, but not consistently when demographic factors were accounted. However, differences in knowledge and attitudes to people with ASD were identified amongst Black, Asian and White ethnic groups. Research limitations/implications These findings have implications for policy and public health and education campaigns, including ensuring contact and knowledge of autism among the public. Originality/value These findings have implications for policy and public health and education campaigns, including ensuring contact and knowledge of autism among the public. Additionally, further effort is required to target public knowledge and attitudes to autism, particularly among ethnic groups. Institutional support tailored to encourage structured and unstructured contact across public domains such as education, health, social and care practices could effectively reduce prejudice between the public and people with ASD over time.
... For families such as those from Somalia with different experiences of how SEND might be viewed and supported, this posed significant problems, together with possible fear of authorities due to migration experiences. Furthermore, there were racist and discriminatory approaches to families' abilities to know and support their children's needs and a lack of access to legal aid (Broomfield, 2004;Corbett and Perepa, 2007;Temple, Young and Bolton, 2008;Singhal and Oliver, 2012;Kulz, 2015;Gillborn et al., 2016). It must be noted however that there were significant constraints on all parental "choice", both in the previous system and even more pressingly in the new one, with schools, local authorities and families battling over provision (Tomlinson, 1985;Allan, 1999Allan, , 2008Tirrarao, 2018a;Weale, 2018). ...
Conference Paper
This study explores how a group of Somali boys and girls who migrated to the UK as refugees and who may require “educational help” negotiated their identities as “possible” learners at home and at school. Lived experiences of educational inequality at the intersection of refugee, gender and Special Educational Needs and Disability (SEND) are not often considered within research. However, in practice this is found to be a pressing area of concern, including in communication between schools and families. The study takes an in-depth focus and draws on post structuralist, post-colonial, feminist understandings of identities to explore notions of subjectivity, marginalisation, agency and belonging. Using ethical, young-person-centred approaches, I conducted interviews with eighteen young people, six family members and three teachers who were nominated by the young people and I observed a range of lessons chosen by the young people. Narratives co-constructed through these methods are analysed as sites of identity performance and meaning making. The study argues that in order to explore refugee young people’s negotiations of notions of SEND, the ways that these learner identities interwine with English as an Additional Language (EAL), underachievement and disadvantage need to be understood within racialised, classed and gendered discourses about what it means to be a learner. Reflecting on the difficulties of considering this wide range of social and learner categories, the analysis demonstrates that these are nevertheless important processes to understand. Family, religious and school notions of success and failure are shown to collide, conflict and converge, challenging prevailing assumptions about Somali families as resisting “educational help” and highlighting the need for appropriate engagement strategies from schools with families. An exploration of im/possible spaces at home and at school, rather than considering learners as im/possible, is presented as a fruitful way to understand the complexity of these young people’s negotiations.
... 105 Alternatively, recent research in the UK revealed differences in the treatment of children with autism according to ethnicity. 106 Taking intersectionality into account has a number of implications for anti-racism law and policy. First, there are some grounds which are very difficult to disentangle from 'race' and ethnicity. ...
... 105 Alternatively, recent research in the UK revealed differences in the treatment of children with autism according to ethnicity. 106 Taking intersectionality into account has a number of implications for anti-racism law and policy. First, there are some grounds which are very difficult to disentangle from 'race' and ethnicity. ...
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During the past two decades, the European Union has become increasingly involved in combating racism. Most notably, EU legislation requires Member States to introduce laws prohibiting racial discrimination in many aspects of everyday life, such as employment, education, healthcare, and housing. Alongside legislation requiring action at national level, the EU institutions have also made periodic commitments to take anti-racism objectives into account within all areas of EU law and policy. The latter approach is often referred to as 'mainstreaming' and the technique is borrowed from earlier initiatives to promote the mainstreaming of gender equality. This book analyses the extent to which the objectives of combating racism and promoting ethnic equality have been effectively mainstreamed throughout a range of EU policy fields. It begins by considering what combating racism means in the contemporary context of an enlarged EU. Specifically, the book scrutinises what is entailed in mainstreaming ethnic equality objectives. The second part of the book turns to examining several areas of EU law and policy in order to identify the extent to which such objectives have been, in practice, integrated into these activities. Here, the book looks at topics such as employment, social inclusion (including education and health), immigration, and criminal law.
Article
Using vignettes and interviews, this study examined understanding and awareness of autism, and (a)typical development more broadly, among 32 Somali parents living in the United Kingdom. Results demonstrated that parents of both autistic (n = 16) and non-autistic (n = 16) children were just as likely to identify vignettes of typically developing children, yet parents of autistic children appeared more astute to signs of atypical development. Across the whole sample, parents commonly identified and labelled vignettes of autistic children, but experienced more difficulty labelling vignettes that described children with other forms of atypical development, sometimes mislabeling these children as autistic. This suggests that there is a need for greater support in recognising and identifying different types of atypical development in the Somali community (to mitigate the risk that the term 'autism' may take on its own meaning within the Somali community, becoming a euphemism for a range of developmental conditions). Analysis of interview data identified key sociocultural factors that either helped or hindered the inclusion of families with autistic children within the community, including the Somali community's: (1) perceptions of disability, (2) beliefs about the causes of autism in the Western world and (3) strong reliance on religious beliefs in understanding and accepting an autism diagnosis.
Article
Full-text available
There is a growing recognition of the variation between local authorities in the proportions of children with SEN, the apparent composition of these groups, and the nature and quality of services provided to support them. Local area data collected on children with SEN, particularly the termly School Census and the annual SEN2 return by local authorities, show differences in the number of children with SEN, the nature of their recorded conditions and the Code of Practice level of support they are receiving. This variation was highlighted by the House of Commons Education and Skills Select Committee which commented on a ‘postcode lottery’ or a ‘lottery of provision’, and reports by the Audit Commission and Ofsted which also highlighted variation in provision and standards.
Article
Much research has documented the elevated levels of stress experienced by families of autistic children. Yet remarkably little research has examined the types of support that these families perceive to be beneficial to their lives. This study, co-produced by researchers and school-based professionals, sought to establish these families' support needs from their own perspectives. In total, 139 parents of autistic children with additional intellectual disabilities and limited spoken communication, all attending an inner-city London school, participated in an initial survey examining parental wellbeing, self-efficacy and the extent to which they felt supported. Semi-structured interviews were conducted with a subgroup of parents ( n = 17), some of whom reported in the survey that they felt unsupported, in order to gain their in-depth perspectives. The results from both the survey and the interviews suggested that existing support (particularly from formal support services) was not meeting parents' needs, which ultimately made them feel isolated and alienated. Parents who were interviewed called for service provision that adopted a relational, family-centred approach - one that understands the specific needs of the whole family, builds a close working relationship with them and ensures that they are supported at times when the parents and families feel they need it most.
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