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 the latest statistics and our own evidence relating to children and young people with autism, and our view about what this tells us.
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 children and young people with autism are to thrive. A lengthy wait for a formal diagnosis of autism often creates knock-on delays in children getting the right educational support.
Ambitious about Autism’s research found 46% of parents are waiting over 18 months from getting a referral for an autism assessment to it actually taking place. This uncertainty and delay is very difficult for families to deal with. We need to ensure all waiting times meet the NHS’s 12-week deadline and once a medical diagnosis is received it should automatically trigger an Education, Health and Care plan assessment so that a child’s educational support needs can be promptly identified.
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% said the 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. To support parents, Ambitious about Autism has created an online toolkit to help parents navigate their autism journey in the early years.
Autistic young people are 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 from 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.
In 2020, 150,714 pupils were receiving support for autism as their primary need.
The number of children receiving help for autism in schools has more than doubled in the last decade. As the numbers of children with autism continues to grow, we must ensure the education system is equipped to support them with adequate resources, autism confident staff and the right mix of schools.
There are 119,444 boys and 31,270 girls receiving help for autism in schools.
It is recognised that girls with autism 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 are receiving support for autism in schools – the number of girls also receiving support has increased significantly in recent years. For example, the number of girls with an Education, Health and Care plan stating autism as their primary need has almost tripled in the last decade.
This indicates that diagnosis services are getting better at spotting autistic girls and we will continue to see more of them in our education system in the future. This also means that all schools should be prepared for these pupils and ensure the support they offer is able to meet their needs.
72% of autistic children are in mainstream schools and academies.
In the last decade there has been a big rise in the number of children and young people with autism in our school system. However, the proportion in mainstream schools and academies has remained constant at around 70%. In 2020, just over 40,000 children with autism were being educated in special schools.
Some children need a specialist setting to reach their full potential, but many can thrive in mainstream education with the right support and effective planning. All schools should have an inclusive ethos and a focus on what is in the best interests of each child.
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 EHC 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 for 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 solely on the needs of the child.
Exclusions of autistic pupils are increasing rapidly. Exclusions of autistic pupils have more than doubled since 2012. Latest figures show that over 5700 pupils were excluded in one year.
The impact of these exclusions can’t 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 children with autism are disproportionately at risk from exclusion, compared to other pupils.
We were disappointed with the findings and response to the Timpson Review of School Exclusions which we felt did not address the underlying reasons why autistic children are disproportionately excluded.
To tackle the exclusion problem, we would like to see:
- Ofsted given more power to thoroughly investigate unlawful exclusions and take appropriate action.
- All school staff - including teaching assistants and support staff – given training in understanding autism.
- A strengthening the accountability system to ensure schools and local authorities are incentivised to support children with autism, for example examining whether to make schools financially and academically responsible for children they exclude or place in alternative provision.
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 especially 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 1 in 4 young people with autism access education beyond school.
Ambitious about Autism research revealed that 60% of autistic pupils have such high anxiety they miss days at school as a result. Meanwhile, the number of pupils with autism who are persistent absentees from school has increased in the last few years.
Sadly, we also know that bullying is a fact of life for many autistic pupils and many of these young people also experience mental health issues. We must make sure school is a welcoming place for all and keep these children in school so they can reach their full potential.
According to Ambitious about Autism research, 80% of parents have lost sleep over finding the right educational setting for their child. We also know that a fifth of parents have had to give up their job, miss days from work, or reduce their working hours due to the unlawful exclusion of their son or daughter from school.
Meanwhile, many parents also have to battle through the courts to get their child the support they need – costing families both financially and emotionally.
Every child has a basic right to a full and rounded education, but too often autistic pupils are being denied this. A school system that only works for some pupils is not fit for purpose – we must make education, no matter what setting, more inclusive.
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 career 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.
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.
To help reduce loneliness among autistic young people, our Ambitious Youth Network provides a space for young people aged 14-25 to connect with others with shared interests and to talk to people who might have similar experiences to them.
Research shows 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.