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Position statements

Ambitious about Autism campaigns for policy change to ensure all autistic children and young people are able to learn, thrive and achieve in the early years, in education, in employment and beyond.  

Here you will find latest statistics and our own evidence relating to autistic children and young people, and our view about what this tells us.  
 

Autism is a lifelong developmental disability which is estimated to affect one in 100 people in the UK. However, it is likely this figure is higher. A recent study of seven million young people found that around one in 57 children in the UK are autistic (1.76%). 

The number of children and young people receiving help for autism in schools has been increasing every year from 16,930 in 2010 to over 160,000 in 2021. 

As the numbers of autistic children and young people continues to grow, we must ensure the education system is equipped to support them with the right funding, resources and trained staff.

 

The number of autistic children in schools has been increasing every year, up to 163,041 in 2021. However, the proportion in mainstream schools and academies has remained constant at around 70% for the last 10 years.

In 2021, 44,438 autistic children were being educated in special schools. 

Some children will need a specialist setting to reach their full potential, but many can thrive in mainstream schools with the right support. All schools should have an inclusive ethos and a focus on what is right for each child.

 

70% of under 18s are waiting longer than the NHS 13-week deadline for a medical diagnosis for autism, with an average waiting time of 352 days.

Early intervention, education and support are critical if autistic children and young people are to thrive. A lengthy wait for a formal diagnosis of autism often creates knock-on delays in children getting the right education, health and social care support. 

Ambitious about Autism’s research found that 46% of parents are waiting over 18 months from getting a referral for an autism assessment to actually take place. This uncertainty and delay is very difficult for families to deal with. 

We need to ensure all waiting times meet the NHS’s 13-week deadline. Once a medical diagnosis is received, it should automatically trigger an Education, Health and Care (EHC) plan assessment so that a child’s educational support needs can be promptly identified.

Meeting other autistic people is key to post-diagnostic support. The opportunity to get to know other people who might have similar experiences provides a vital sense of belonging, solidarity, and the chance to share experiences that many autistic people may have previously believed they were alone in having. 

 

Parents are struggling with a lack of support after an autism diagnosis. In a survey of nearly 4,000 parents carried out by Ambitious about Autism, over 70% told us the post-diagnosis support they received wasn’t good enough.

In many cases, parents reported being left “completely alone” without a follow up appointment or signposts to sources of support, for example, speech and language therapy. Different areas across England have different services for diagnosis and support can be patchy. 

To support parents, Ambitious about Autism has created the Right from the Start online toolkit to help parents navigate their autism journey in the early years.

Autistic young people are also struggling with a lack of support after an autism diagnosis and there are often very limited opportunities to access help and advice. Post-diagnostic support is often tailored to the needs of parents and carers, rather than to the needs of autistic young people themselves.

Young autistic people need access to relatable information form autistic peers to help with self-acceptance and understanding what autism means for them. They need support to learn about coping strategies, co-occurring conditions, and reasonable adjustments. The focus should be on early support that can provide young people with the knowledge, skills, confidence, and motivation to live their life in a way that suits them. All post-diagnostic support services and resources should place the young person’s quality of life, happiness, and wellbeing at the centre.

Meeting other autistic people is key to post-diagnostic support. The opportunity to get to know other people who might have similar experiences provides a vital sense of belonging, solidarity, and the chance to share experiences that many autistic people may have previously believed they were alone in having. 

 

The most recent estimated ratio of autistic males to females is 3:1 Autistic girls remain under diagnosed, compared to boys. This has been attributed to girls displaying autistic traits in subtler ways than boys or being more adept at ‘masking’ their autism.

While it is true that more boys receive support for autism in schools than girls, the number of girls receiving support for autism has increased significantly in the last few years. For example, the number of girls with an Education, Health and Care (EHC) plan stating autism as their primary need has almost tripled in the last decade.  

This indicates that the diagnosis services are getting better at recognising autistic girls and that we will continue to see more of them in the education system in the future. 

This also means that all schools should be prepared for these pupils and ensure the teaching and support they offer is able to meet their needs. 

 

Stigma, language barriers and stereotype perceptions of behaviour, mean that some children and young people from Black, Asian and minority ethnic (BAME) backgrounds are not even considered for an autism diagnosis. Some BAME parents have reported that they feel there is an initial tendency, especially within schools, to label their child as having behavioural problems instead of displaying possible signs of autism. They say that it can be hard to convince schools, even after a diagnosis, that autism is the cause of their behaviour. 

Following a diagnosis, many BAME families struggle with a lack of information and support. Many parents and carers, especially from migrant backgrounds face difficulty accessing support services and advice because information is only provided in English or contains too much jargon. Families also say that professionals treat them badly, make assumptions about them or misunderstand them due to a lack of cultural confidence. 

More needs to be done to tackle the delays and inequalities experienced by BAME families and young people when seeking a diagnosis. Professionals involved in the diagnosis process must understand the barriers and challenges BAME autistic children, young people and their families face. It’s also crucial that information is accessible and, where possible, translations are provided for people who don’t have English as a first language. 

 

Local authorities must make a decision about whether to grant an Education, Health and Care (EHC) plan within 20 weeks of the initial assessment. However, in 40% of cases this deadline is missed.   

An EHC plan is a legal document which sets out the special educational needs of a child or young person, the outcomes they should achieve and the support they need to reach these goals.  They are a vital tool that helps many autistic children and young people unlock the support they need at school or college to meet educational outcomes.  When local authorities miss deadlines for issuing EHC plans, it means children face delays getting the support they need, often in the crucial early years of education.  

Ambitious about Autism’s survey of 4,000 parents revealed that 15% of families are waiting between six and 12 months to receive an Education, Health and Care plan.  

 

In 2020, 7917 parents had to appeal decisions made regarding their Education, Health and Care (EHC) plans. Nearly half of these (3722) related to decisions made about autistic children

The tribunal process is highly stressful for parents and carers and further delays the support children receive at school or college. Tribunals are expensive – not just for parents but also the taxpayer. 

The majority of tribunal cases involving children with autism are won by parents or conceded by local authorities. Local authorities should be basing their decisions on each child’s support needs and certainly shouldn’t be swayed by any other considerations – such as financial pressure. However, from our work with parents and young people we’re concerned that local authorities’ decisions are not always based on solely on the needs of the child. 

 

Official statistics show that recorded exclusions of autistic pupils are increasing rapidly. Exclusions of autistic pupils have more than doubled since 2010. Latest figures show that over 5000 pupils were excluded in one year.

However, we know that in reality this number is much higher due to unrecorded exclusions – for example, when a parent is told to pick a child up during the school day but does not receive a written letter. This process is unlawful, but schools are not being held to account when they break this exclusions law.

Our research tells us that 82% of parents have lost sleep over finding the right school for their child, while many children miss days due to their needs going unsupported. We also know that a fifth of parents have had to give up their job or reduce their working hours due to the unlawful exclusion of their child from school. Many parents also have to battle through the courts to get their child the support they need – costing families both financially and emotionally.

The impact of school exclusions should not be underestimated – not only do children fall behind academically, but the isolation from their peers creates deep unhappiness, social anxiety, and mental health problems. Our evidence clearly shows autistic children are disproportionately at risk from exclusion, compared to other pupils. 

We would like to see the Department for Education publish inclusion guidance to sit alongside exclusions guidance, with examples of models that have been successfully used to include autistic children and young people in the full life of schools, colleges and their communities.

 

Only half of teachers (53%) feel they have been adequately trained to support autistic children in the classroom. Meanwhile, an Ambitious about Autism survey revealed that 97% parents feel that teachers should get better training on autism.  

We believe that schools should follow the new model introduced by the NHS which sees all health and social care staff receive mandatory learning disability and autism training and that all school staff, including teaching assistants and support staff, should be given training in understanding autism. We also think that school governors who should receive better training especial any who are likely to hear exclusion appeals. 

 

School is too often a hostile and anxiety provoking place for autistic children and young people. Fewer than half of autistic children and young people say they are happy at school. 

Sadly, we know that bullying is fact of life for many autistic pupils and as a result, many experience mental health issues. 82% of children with learning disabilities are bullied at school, twice as high as other children. 

Less than one in 12 (8%) of autistic children and young people think other pupils and students know enough about autism. Meanwhile, the number of autistic pupils who are persistent absentees from school has also increased in recent years. 

We must make sure school is a welcoming place for all and keep these children in education so they can reach their full potential.

 

Social isolation is sadly a fact a life for many young autistic people. A survey of over 7,000 autistic people and their families by the National Autistic Society (NAS) found that 79% of autistic people and 70% of family members feel socially isolated. Meanwhile 50% of autistic people and family members said they sometimes or often don’t go out because they’re worried about how people will react to their autism. 

Children with special educational needs and disabilities also report feeling lonely at school, with 43% of disabled children saying they don’t have any close friends who they could call on for help.

To help reduce loneliness among autistic young people, our Ambitious Youth Network provides a space for young people aged 16-25 to connect with others with shared interests and to talk to people who might have similar experiences to them. 

 

Research by Ofsted found that 80% of primary headteachers and 72% of secondary headteachers report making detrimental changes to the support provided to pupils with SEND because of financial pressure. For example, schools that Ofsted spoke to described providing fewer or less regular out-of-class interventions, focusing support on core subjects, and grouping pupils with special educational needs and disabilities (SEND) together.

While we know a lot of money goes into the SEND system, autistic young people and their families still describe constant battles and patchy support. We need to properly account for where that money goes and work out where it makes the most positive difference. 

Local Authorities, Integrated Care Boards, schools, colleges and early years settings should be required to publish their SEND spend, what it was used for, and the impact it had annually. For example, how much money goes into early intervention, resources, workforce and training. 

 

The social cost of autism in the UK is estimated to be £32 billion a year. Early intervention not only helps autistic children and young people achieve the best outcomes but also provides the best social return on investment, reducing costs for the taxpayer. 

High quality provision for autistic children in mainstream schools helps to reduce the need for costly specialist places. Similarly, investment in early mental health and social care support reduces the need for costly inpatient admissions.

Currently only 21.7% of autistic people are in employment, representing a huge waste of talent and potential. Increasing understanding of neurodiversity among employers and government investment in employment programmes would help autistic young people to make a valuable contribution to the economy. 

 

Just 21.7% of autistic people are in employment, the lowest rate of employment of all disabled groups.  

This is a shocking waste, not just of personal potential and talent, but it also means businesses, and the wider economy, are missing out on the huge benefits autistic people can bring to the workplace.  

Many barriers still exist preventing autistic young people from entering the workforce, including access to high quality careers advice, inflexible hiring practices and non-inclusive workplace cultures.  

We need more flexible solutions that will enable autistic young people to access jobs in a way that is sustainable and meaningful for them. This includes tailored careers advice delivered by professionals who understand their needs and reasonable adjustments that are understood, respected and embedded within all workplaces.

 

Our Employ Autism programme helps autistic people join the workforce by increasing confidence in autism and neurodiversity in the workplace. The programme delivers training, resources and ongoing mentorship to a wide range of partners across the UK, including employers, careers and employability professionals, parents and young people. 

Of all disabled graduates, autistic graduates are the least likely to be in full-time employment and the most likely to be unemployed. An outcomes survey of people who graduated in the 2017/18 academic year found that only 36.4% of first degree autistic graduates were in full-time employment, compared with 60.4% of graduates with no known disability.

Autistic graduates in employment are the least likely of all disabled graduates to be employed on a permanent contract and are more likely to be employed on a fixed-term, temporary or voluntary basis. Employed autistic graduates are also less likely to report their qualification level and subject was a formal requirement for their job role, indicating that employment found may not be a graduate-level role. 

These disappointing outcomes are not a true reflection of the potential of autistic graduates but a sign that autistic students are not receiving the right advice and support they need from universities and employers. 

To break down barriers and improve outcomes for autistic graduates, our Higher Education Network works with 17 universities across the UK. Through the network, we train careers staff at the universities to help them support their autistic students, as well as training and supporting employers to offer paid work experience placements to autistic students and graduates. 

 

According to research by the All Party Parliamentary Group (APPG) on Autism, only 36% of young autistic people who have gone through the transition to adult services say they were full involved and just over a quarter (26%) said they received enough information. Less than a third (30%) said they had enough time to prepare for the transition to adulthood. 

Many young autistic people find that when they reach adulthood, they see a sudden decrease in the amount of help and support available. Criteria for accessing support is often different for child and adult services, with adult services requiring individuals to be in crisis. Many young autistic people are falling through the cracks, facing long waiting lists for adult mental health services and losing access to the regular support they received as children. This can have a devastating impact on young autistic people’s mental health. 

Autistic young people moving from child to adult services need a smooth transition managed by professionals who understand their needs and keep them involved. They should also have access to peer support so they can share their experiences with other young people. 

 

A survey of over 2000 autistic children and young people and their parents and carers by Ambitious about Autism revealed the impact of coronavirus.

 Mental health and wellbeing has deteriorated:

  • Following the outbreak of the pandemic, 63% of autistic young people say their mental health is worse. 
  • During the pandemic, three quarters said they felt anxious and just over half said they felt frustrated, stressed and overwhelmed. 
  • Three quarters think that they will need ongoing support for anxiety or mental health issues following the pandemic. 

 

Support has been withdrawn: 

  • Before the pandemic, more than half (58%) of autistic children and young were receiving specialist support in education and one fifth were receiving mental health support. 
  • Almost 80% reported that this support had reduced or stopped following coronavirus.
  • Four in ten had their support stopped during lockdown. 
  • Two thirds of autistic children and young people did not receive any support during lockdown. 

 

Autistic children, young people and their families want additional support:

  • Three fifths of survey respondents want educational support to help transition back to life before lockdown. 
  • Almost half want mental health support. 
  • One third want local support groups. 

 

Impact on education:

  • 68% of family members said their autistic child was anxious at loss of routine and 65% could not do online work.
  • Around half of parents said their child’s academic progress has suffered during the pandemic.

 

Research shows that that 70% of autistic children have mental health problems, such as depression, anxiety or obsessive compulsive disorder, while 41% have two or more conditions. A survey of over 11,000 autistic people and their families by the All Party Parliamentary Group (APPG) on Autism found that that 82% of autistic adults and 86% of families found the process of getting support from mental health services took too long. Meanwhile only 14% of autistic adults and 11% of families said there were enough mental health services in their area to meet their needs.

Long waiting lists and a lack of autism-specific mental health services are a reality for many autistic young people experiencing mental health conditions. For many, support is only available when they reach a crisis point. Autistic young people should have access to timely mental health support in their communities with professionals who understand autism. 

 

Latest figures show that there are over 2000 autistic people and people with learning disabilities in hospital. Of these, 55% have been in hospital for over two years. Shockingly, we also know that the number of under 18s in hospital has almost doubled since 2015 from 110 to 200.

Following the Winterbourne View hospital scandal in 2011, the Government committed to moving all autistic people and people with learning disabilities inappropriately placed in hospital to community-based support by 2014. 

However, this has not happened and too many autistic people remain shut away in inpatient units and excluded from their communities.  These units are often many miles away from their homes, and they can be detained for years with poor outcomes

Autistic young people have the right to live in a community of their choosing and with early intervention, these hospital admissions are preventable. We need better investment in early community-based support in education, health and social care so that autistic young people can live rewarding and fulfilling lives as part of their communities. 

 

Autistic people have a much lower average life expectancy of just 54 years compared on 70 in the general population. A key cause of early death is suicide. Autistic children are 28 times more likely to have suicidal thoughts (or attempt suicide) than their peers. Meanwhile, autistic adults without a learning disability are nine times more likely to die from suicide. 

Early intervention and timely mental health support are critical to improving the mental health and life chances of autistic people. Mental health services need skilled professionals who are able to meet the needs of autistic people with additional mental health conditions, and to support those who have suicidal thoughts. 

Many autistic young people tell us they struggle to have their health problems understood by medical professionals in clinics and hospitals. Sensory differences can make invasive medical procedures much more difficult for autistic people and they may not indicate pain or communicate symptoms in a way clinicians expect.

The NHS has introduced mandatory training on autism and learning disabilities for its staff which is welcome, but we must keep building understanding of autism and the specific needs of autistic patients across the whole health service.