10 years of parliamentary questions: what the government knows about autism

10 years of parliamentary questions: what the government knows about autism written and researched by Sasha Daly, TreeHouse Senior Policy & Public Affairs Officer

January 2008

10 years of parliamentary questions: what the government knows about autism

Introduction TreeHouse was ten years old in 2007. While as an organisation we tend to look forward, a tenth anniversary is a good time to look back and take stock. We have changed in our ten years and so has the autism education movement. Notably, the relationship with Parliament has improved beyond recognition.

This changing relationship can be followed through by looking at the Parliamentary Questions (PQs) asked in both the House of Commons and the House of Lords over the ten years from 1997 to 2007 and how the government has responded.

PQs are a way for MPs and Peers to hold the government to account, either in the form of oral questions to Ministers in both chambers of Parliament or as written questions. Arguably, they act also as an indicator of the most pertinent issues on particular topics, because the issues that MPs choose to raise are as a result of their own constituency work or through lobbying groups and charities trying to raise awareness of them.

For more information about our Policy work, telephone 020 8815 5441 or email policy@treehouse.org.uk.

For more information about TreeHouse visit our website www.treehouse.org.uk With thanks to Virginia Bovell, Steve Broach and Tom Hoyle for their initial work on this research.

TreeHouse’s Policy and Campaigns work is kindly supported by TreeHouse

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10 years of parliamentary questions: what the government knows about autism

About TreeHouse TreeHouse is the national charity for autism education. Our vision is to transform through education the lives of children with autism and the lives of their families. TreeHouse was established in 1997 by a group of parents determined to secure an appropriate education for their children with autism.

These parents set up the first school in the UK using the principles of Applied Behaviour Analysis.

TreeHouse school delivers high quality education to children with autism in a school that currently has 58 pupils aged from 3 to 14, but will grow to 80 pupils aged up to 19.

The founding parents also recognised the need for a national initiative to raise expectations and standards. As the school grew, so too did the role of TreeHouse in promoting an expansion of the range and quality of autism education available for all children across the UK. The Development and Public Affairs (D&PA) team focuses on awareness raising and campaigning, helping to transform the environment in which our school works to enable children with autism and their families to live fulfilled lives. This means ensuring that decision-makers understand the effect that autism has on the lives of individuals, families and society and are aware of strategies that will empower these individuals and families to access appropriate provision.

D&PA runs a Constructive Campaigning Parent Support Project, which empowers parents to campaign on the issues that matter to them, and also provides training and consultancy to educational practitioners and providers across the UK. Through all of these activities, D&PA disseminates knowledge and understanding about autism education and shares good practice with a wide range of professionals. We have helped to establish a range of other parent-founded schools; all adopting the same pioneering approach to school-based autism education.

Autism and its impacts Autism is a complex lifelong neurological condition affecting approximately 1 in 100 school aged children in the UK1. Autism is unique because there is no other condition of such complexity, affecting so many children in the UK, about which so little is known. Everyone with an Autistic Spectrum Disorder (ASD) shares three main difficulties, referred to as the ‘triad of impairments’. The triad is made up of impairments in: • • •

social interaction – difficulties with social relationships social communication – difficulties with verbal and non-verbal communication social imagination – difficulties with understanding how others think and feel and in the development of interpersonal play and imagination

There are many positive attributes of those individuals who have autism and experiences for those living and interacting with people with autism. However, unfortunately, there are also many ways in which individuals and families of individuals with autism are impacted on negatively and experience discrimination because of this disability.

Children with autism often lack access to appropriate education and social care services, and can find themselves victims of bullying and excluded from schools that are inadequately equipped to deal with their needs. Over 40% of children with autism have been bullied at school2 and 27% of children with autism have been excluded from school, a quarter of whom have been excluded on more than one occasion3.

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10 years of parliamentary questions: what the government knows about autism

These two statistics are likely to be related; the lack of understanding of ASDs by teachers and in schools causes some of these problems. We know that less than a third of teachers report that they feel confident in teaching children with autistic spectrum disorders, and over three quarters of teachers identify lack of professional development as the main barrier to teaching children with autism4.

Families of children with autism also experience difficulties in accessing appropriate care services.

Only 11% of carers who have children with autism work full time and 70% cite lack of appropriate care facilities as a major barrier to work5. These types of pressures have a direct impact on families’ ability to cope; many units break down and are more at risk of living in poverty. Families with disabled children are 30% more likely to be single parents6 and 55% of families with a disabled child are living in or on the margins of poverty7.

All of this of course has an impact on wider society; a recent study undertook to calculate the costs of autism and found that the aggregate cost of supporting people with ASDs in the UK is £27.5 billion annually. Of this, 59% is accounted for by services, 36% by lost employment for the individual with an ASD, their families and other carers, and the remainder by family expenses8.

Analysis of PQs on autism The data on the PQs on autism were extracted from DeHavilland’s (a political information service) store of oral and written PQs asked in the House of Lords and House of Commons. The scope of the questions collected, covering the last 10 years, was in part due to TreeHouse’s own reflection of this period but also because it is increasingly difficult to get reliable data going further back. The number of PQs collected through DeHavilland have been referenced against a search on Hansard and through the House of Commons Information Office.

The search term used to sift for questions relating to autism was ‘autis’ in order to cover mentions of both autism and autistic. This allowed us to focus our analysis on those questions that specifically relate to autism and ASDs. This is not, however, an exact science. There are likely to be questions relating to other areas through which autism will be included, e.g. questions on disability, special educational needs (SEN), learning difficulties and – implied in some answers – a mental health condition. Also, there may be questions about specific issues that have been related to autism e.g.

MMR, which may have been missed.

However, in order to gain an understanding of the government’s knowledge of autism specifically, including wider categorisations, would rely too heavily on assumptions that these always included reference to autism. In order to keep a focus on autism, therefore, only those PQs that relate to autism are considered in this research. Capturing those questions that specifically mention autism gives us an overview of parliamentary interaction with this issue.

Once the data had been collected it was input into a database for analysis. The analysis involved categorising each question by the type, whether written or oral; date of the question; the MP or Peer asking the question; the government department and representative MP responding to the question; the response to the question; and those responses which do not answer the question.

Sub-categorisation of the key issue each question related to and the reasoning given for those questions that were not answered were also done to provide a deeper knowledge of the most important issues relevant to autism for parliamentarians. This also provided a thorough gap-analysis of those questions that have not been answered.

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10 years of parliamentary questions: what the government knows about autism

Findings and evaluation 10 years of PQs on autism Overall, 551 questions were identified from 1997 to 2007 as having been asked about autism. The chart below shows the number of PQs asked each year from 1997 to 2007.

100 80 60

Number of PQs

40 20 0

1997

1998

1999

2000

2001

2002

2003

2004

2005

2006

2007

The topic of the alleged link made between the MMR vaccine and autism peaked at certain times due to timings of interest in this issue, and so can be linked to the peak in questions in 2002 when an increase in the number of PQs on MMR was at its highest. It should also be noted that in 1997 data was only available from October, and in 2007 data was collected only up to July. Given these exceptions it can clearly be seen that there has been a steady increase in the questions asked in parliament over this ten year period.

This indicates a growing awareness of autism over this 10 year period and a growing need for information about ASDs at a government level. During this period there certainly has been a growing understanding of autism in society and a growing level of diagnosis. With this growing number of children diagnosed with ASDs, the knock-on effects on public services and society need to be considered and addressed. The growing numbers of questions in parliament shows that MPs increasingly consider this to be an issue that requires a government response.

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10 years of parliamentary questions: what the government knows about autism

Over the 10 year period the type of question has also shown trends of increase.

100 Home Office

80

Transport

Work and Pensions

Number of responses to PQs

60

Education

40 Health

20 0 1997

1998

1999

2000

2001

2002

2003

2004

2005

2006

2007

The chart clearly shows that the majority of questions over the period have related to health and education. Over the years questions have begun to expand into other areas with questions in transport, work and pensions, and the home office mainly appearing from 2002 onwards. This shows a widening understanding of the different areas of public life on which autism has an impact.

A range of issues have also been covered over this period under each of the different departments, as the table in Appendix A shows. Some of these issues are specific to the different categories of health, education, work and pensions, transport or home office, and some are general issues.

The issues which arose regularly across all categories over the 10 years, which highlight areas of major need for answers from government, are: • • • • •

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incidence and diagnosis research service provision and specialist services training for staff data collection

10 years of parliamentary questions: what the government knows about autism

Diagnosis and incidence Over the last ten years there has been a growing awareness of autism. This has happened in conjunction with a growing number of people being diagnosed with ASDs. There is debate about why there are more diagnoses, including improved diagnostic criteria or an actual increased incidence.

The debate is ongoing and indeed there are recent studies which suggest the total may be higher than currently estimated.

The impact of this can be seen in public life with the number of PQs on this topic, requesting more information about the rise in diagnosis and about the government’s response to the impact of such rises. The key research that the government has funded and refers to is the 2001 Medical Research Council’s review of autism research – epidemiology and causes9.

Whilst this study is useful in setting out some of the rationale for the increases in diagnosis, its focus is on a medical model and does not cover the political, social and economic impacts of autism.

As it is the major study the government refers to in these questions, it does limit the government’s understanding of the impacts and is not sufficient for the government to use as a response to wider questions about the impacts of the incidence of autism.

It is also not a substitute for the government collecting data on this as suggested in a written answer from Liam Byrne, Secretary of State for Health, in 200510. He states that the Department does not collect data centrally on the levels of autism in the adult population, nor does it collect information on the diagnosis of children under the age of eight, and instead makes reference to the Medical Research Council’s review.

Research There are therefore many questions about research which primarily relate to diagnosis, as well as aspects of this research: ethnicity, gender, vaccines, and how these relate to incidence. There are calls also for research about the wider impacts, for instance, on the costs of autism.

There have also been many questions about who has been funding research. The answers show that the government’s picture of autism relies heavily on research and data from the health sector. This will skew the responses to autism to be medically related. There is also a reliance on information and research coming from the voluntary sector.

Another key area of concern is about research into interventions for autism. It is clear that, along with early diagnosis, early intervention is an important factor in the way in which autism is managed. As well as a lack of understanding about the causes of autism, there are also various views about how best to approach autism or treat autism.

Calls for research from the government specifically on autism show a lack of specified research in this area. Evidence-based policy making has been a strong feature of the Labour government, and evidence from external sources to the government show that autism has a unique and specific impact.

It therefore seems sensible that the government should want more research specifically in this area so as to develop an evidence base to inform policy and strategic decisions.

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10 years of parliamentary questions: what the government knows about autism

Service provision and specialist services Questions about service provision and specialist services span the various departments. In general, they relate to the growing incidence of autism and a need for this to be acknowledged in health services, social care, the benefits system, and transport provisions. Some of the problems for people with autism are that much of the focus of disability legislation has been on physical disabilities and not behavioural difficulties. This focus has meant that the specialist needs of families of children with autism and individuals with autism have not been given due regard.

A clear example of this is the Blue Badge Scheme. All the questions put to the Department for Transport were about Blue Badges. The eligibility criteria for the Scheme relate directly to those with physical disabilities or those on the higher level of Disability Living Allowance. For families of children with autism this can often mean it is left at the discretion of their GP to decide if their need is enough to place them on the higher level of Care Allowance in order for them to be eligible for the Blue Badge.

Yet it is not only those who cannot walk who need access to parking which allows close proximity to a destination. The behavioural difficulties associated with autism can put individuals at high risk, and others, if they experience anxiety or difficulties in public and on the roads.

There is a noticeable number of questions which specifically cover education. The debate about the most appropriate placements for children with autism is still strongly argued; special schools versus mainstream schools. The government’s focus on inclusion has highlighted this debate in the field of autism. A social model of disability supports a move to mainstream schooling for all. However, we continue to hear many problems with placements in mainstream schools with reports of bullying, exclusions and battles to get the right support.

While service provision and a need for specialist services will always be a factor in the government’s approach to autism, it is important that the government gets the right balance between national strategies to provide services and a need for specialised services to meet the needs of the wide spectrum that autism encompasses. Inclusion for all is the goal, however the reality is that currently there are so many system failures for people with autism due to lack of knowledge, understanding and skills that the problems encountered in mainstream settings unfortunately all too often result in exclusion. Pupils with autism should not be left to suffer while mainstream schools are made ‘fit for purpose’ of educating all children and young people.

Training for staff Given the increased diagnosis of ASDs and the demonstrable growing awareness of autism, it is not surprising that in more recent years there have been increasing numbers of questions about the ways in which public sector staff are trained to work with and support people with autism.

It is encouraging that we are moving on from a focus solely on the causes to a widening need for information about the impact of autism and appropriate support for people with autism. The majority of these questions focus on school staff. Again this is unsurprising, as education is known to be the most effective intervention for autism, and specifically early intervention being particularly effective11.

Over 40% of children with autism have been bullied at school; 27% of children with autism have been excluded from school, a quarter of whom have been excluded on more than one occasion. This presents the extent of some of these problems.

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10 years of parliamentary questions: what the government knows about autism

Training for teachers and other staff working with children with SEN in school should assist with combating some of these problems. It is known that teachers themselves feel unconfident about how best to teach young people with autism12.

These same concerns about staff awareness are also spreading to other services. The majority of questions for the Home Office relate to policy and prison service awareness of autism, as do several of the questions for the Department for Work and Pensions. These are important and encouraging developments in the thinking of politicians on this topic.

Training for staff working with people with autism is integral to the improvement for services. The National Autistic Society’s recent campaign ‘Think differently – act positively’13 shows that although people are now more aware of autism with 92% of people claiming to have heard of autism, there is a lack of awareness of the details of what having autism means with 90% not knowing how common it is and only 23% realising that Asperger syndrome is a form of autism. This general lack of awareness will be reflected in the public service workforce and suggests that more detailed training is now where work needs to be done.

Data collection There were many questions which specifically requested information about statistics held on autism – a total of 154 out of the 551 PQs on autism. These PQs cover a wide range of departments: the Treasury, Department for Children, Schools and Families, Department for Communities and Local Government, Department for Education and Skills, Department of Health and Department for Work and Pensions. This again demonstrates the relevance of autism across government.

The vast majority are, however, still focused on health and education. The most frequent are those questions about the number of pupils or patients with autism, and levels of funding to support pupils and patients with autism.

Nearly 60% of these questions were categorised in the analysis of this data as being unanswered.

The reasons given most often were that the information requested is not collected; that the information requested is not held centrally; or that the information requested is not available. This presents a shocking picture of the government’s evidence base on autism. The response of the government that it simply does not hold this information is worrying for the planning of provisions for the future. Data which relates specifically to autism will help government and local authorities plan for appropriate support and provision, and ensure that there are good outcomes for children, young people and adults with autism.

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10 years of parliamentary questions: what the government knows about autism

The missing answers One of the most significant findings of this research is the high number of questions about autism which the government is unable to answer. Out of the total 551 PQs asked about autism from 1997 to 2007, 114 (21%) were not answered.

Various reasons are given for not having the data requested: • • • • • • • • • •

the information requested does not include autism or there is no autism specific data no estimate is made of the information requested the information requested is not collected there are no plans to collect the information requested it is not possible to provide the information requested records are not kept data is not readily available there is no information available on the question the information requested is not held centrally the information requested is not available

The main reasons given for not being able to answer a question were that the information requested is not collected; the information requested is not held centrally; or the information requested is not available:

30 25 20

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10

Not available

Not held centrally

No information

Not readily available

Not kept

Not possible to provide

No plans to collect

Not collected

0

No estimate made

5

Not include autism/ no autism specific data

Number of PQs not answered

15

10 years of parliamentary questions: what the government knows about autism

These questions cover a wide range of issues, as presented in the table in Appendix B. The majority of these missing answers relate to statistics from the government. It is hard to imagine how the government can have a strategic approach to autism without holding autism specific statistics. For instance, exclusions are a key area of policy development and an area of major impact for children with behavioural difficulties. An effective strategy must look at the dynamics of the problem including a break down of statistics to identify those most likely to be excluded and look at the specific supports needed to avoid exclusions based on lack of understanding of behavioural disabilities.

Conclusions This study of PQs on autism has shown how they can act as an indicator of public awareness of an issue and assist with tracking development of understanding over time. It is clear from the findings that autism increasingly has become an issue which has become widely recognised over the past 10 years. Whilst this recognition is good, there are still many gaps in understanding the impact of ASDs and in meeting the associated needs.

Areas of particular interest have clearly emerged in the analysis of the questions and their answers. A gap analysis has shown where more information and understanding is required. Quite simply, there is a shortage of good data on autism.

Despite some positive developments in the collection of data on autism such as Pupil Level Annual School Census (PLASC), there is growing concern about the government’s lack of information on autism services. As the government moves away from centralisation to a system of local commissioning and delegated funding, it will be vital that it creates better systems of ensuring that services are delivered effectively to those who need them most, in an accountable way.

The government’s aim to delegate responsibilities – including oversight functions – has been set out in the Childcare Bill, which requires local authorities to become strategic commissioners and ‘market enablers’. Central governments stated objectives have been to “avoid burdening local authorities” and “to make clear the scope for local flexibility”14.

Of course, employing more statisticians and creating more forms to fill would not solve the problems confronting children with autism and their families. However, better reporting and monitoring to parliament would enable us to draw a clearer view of what was being delivered for them.

We would therefore recommend that the government commits to a review of the data currently collected on SEN, and in particular considers the need to drill down further to enable access to information about types of SEN. This will assist in an understanding of the type of needs there are and help local authorities to plan to meet them on an evidence driven basis.

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10 years of parliamentary questions: what the government knows about autism

APPENDIX A Issues covered by PQs from 1997-2007 ABA Access to employment Additional financial support Advice for Local Authorities ASBOs Assessment Autism charter Autism plan Autism strategy Awareness Awareness in police/prison service Awareness of autism Benefits Blue Badge Scheme Bowel disease Bullying Carer entitlements Collecting information centrally Costs of autism Data collection Definition of autism Diagnosis Early intervention Early support materials Education services Employment statistics Ethnicity Exclusion from school Exemplars Framework for SEN Funding Funding for support Further education Good practice Guidance on autism Housing Impact evaluation Improving data collection Incidence Inspection

1. Baird G et al, South Thames Special Needs and Autism Project (SNAP) ‘Autism Prevalence Study’ The Lancet, 2006; Office of National Statistics (2005) ‘Mental Health of Children and Young People in Britain’ ONS, London; Previously the Medical Research Council suggested a prevalence rate of 1 in 166 children under 8, which teachers have reported numbers as high as 1 in 80. Medical Research Council (2002) ‘Review of Autism Research: Causes and Epidemiology’ MRC, London; Barnard J et al (2003) ‘Autism in Schools: Crisis of Challenge?’ NAS, London.

2. Batten, A et al ‘Autism and Education’ National Autistic Society, 2006 3. Office of National Statistics, ‘Mental Health of Children and Young People

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Interventions Mainstream schools Measuring quality Mental health hospitals Minimum training standards MMR/vaccines Monitoring numbers Munchausen syndrome National figures National Service Framework NHS database Not in full-time education Physical restraint Police assessment of needs Prevention Provision of services Pupil Referral Units Qualifications Quality of life Recruitment of staff Referral and assessment Research Respite care Ring-fenced funding School admissions Social services Son-Rise Special education facilities/provision Special schools Specialist services Specialist staff – teachers, SLTs Specialist teaching aids Staff training Statements for special educational needs Sufficient funds for services Support for exams Support to work TEACCH Teacher training Teaching standards Therapies Tribunal Youth services

in Britain’, 2005 4. National Union of Teachers, SEN survey, 2006 5. National Autistic Society, ‘Autism Rights in Reality’ 2003 6. Emerson, E. and Hatton, C. ‘The socio-economic circumstances of families with disabled children’ Institute of Health Studies, University of Lancaster, 2005 7. Gordon, D. et al ‘Disabled children in Britain: a re-analysis of the OPCS disability survey’ University of Bristol, 2000 8. Knapp, M., Romeo, R. and Beecham, J. ‘The Economic Consequences of Autism in the UK’ 2007 9. Medical Research Council, ‘MRC Review of Autism Research – Epidemiology and Causes’, 2001 10. PQ reference 17802

APPENDIX B Issues covered in unanswered PQs ABA ASBOs Benefits Blue Badge Scheme Costs of autism Diagnosis Early intervention Employment statistics Exclusion from school Exemplars Funding for support Incidence Interventions Monitoring numbers National figures Not in full-time education Physical restraint Pupil Referral Units Referral and assessment Research Respite care Ring-fenced funding Social services Specialist services Specialist staff Statements for special educational needs Teacher training

11. Remington, B., Hastings, R.P., Kovshoff, K. et al, ‘A field effectiveness study of early intensive behavioural intervention: outcomes for children with autism and their parents after two years’, American Journal on Mental Retardation, 2007 12. Only 20% of teachers who teach children with autism have had any training at all, and this is usually for half a day. Barnard, J. et al, ‘Autism in schools’, 2002 13. National Autistic Society, ‘Think differently – act positively. Public perceptions of autism’, 2007 14. DfES/DWP ‘Choice for parents, the best start for children: Making it happen – An action plan for the ten year strategy: Sure Start, Children’s Centres, extended schools and childcare’ 2006