Call for evidence outcome

Summary of findings from the government’s review of the National Autism Strategy 'Think Autism': call for evidence

Updated 21 July 2021

Introduction

The Autism Act (2009) was enacted over 10 years ago with the aim of addressing the multiple social disadvantages and the health and care inequalities autistic adults face. Section 1 of the Act put in place a duty on the Secretary of State for Health and Social Care to publish and regularly review a national autism strategy for adults in England.

Since the introduction of the Autism Act (2009), the Department of Health and Social Care (DHSC) has published 2 adult autism strategies, Fulfilling and rewarding lives: the strategy for adults with autism in England (2010) and Think Autism (2014).

In December 2018, we committed to reviewing the existing strategy, Think Autism (2014), to ensure it is still fit for purpose and extending the strategy to children and young people for the first time. This is in recognition of the importance of ensuring that autistic people receive the right support from early years and throughout their lives.

On the 14 March 2019, DHSC and the Department for Education (DfE) launched a national call for evidence. Our aim was to gain a better understanding of autistic people and their families’ views on progress made since the publication of Think Autism and what more needed to be done to improve their lives to inform the actions we would take in the new strategy. This call for evidence involved autistic children and young people, adults, their families and carers, professionals and organisations.

This document provides a summary of the findings from the call for evidence.

Overview of the call for evidence

This document is the summary of findings from DHSC and DfE’s call for evidence on the review of the second autism strategy Think Autism. This call for evidence was launched on 14 March 2019 and closed on 16 May 2019, and involved 2 surveys, which received 2,745 responses, as well as 7 focus groups. We set out more detail about who responded in Annex A.

In this call for evidence, we wanted to hear from autistic people, families, carers (both paid and unpaid) and organisations who provide care and support in a range of settings. To ensure we heard from as many people as possible, we accepted contributions to the call for evidence by email, post and an online questionnaire. To ensure we captured a wide range of views, we developed 2 surveys with tailored questions, which included both open and closed questions:

• a survey for autistic people in England who have a diagnosis or self-identify as autistic (referred to as survey 1). People who answered this survey are referred to as ‘autistic respondents’ throughout this document

• a survey for the families of autistic people, unpaid and paid carers in England, and any organisation in England that works with autistic people (referred to as survey 2). Throughout this document respondents to this survey are referred to as ‘carer respondents’, or ‘organisations’

In recognition of the extension of the new autism strategy to children and young people, the call for evidence sought views from autistic children, young people and their families, as well as adults. This document sets out the results from both of these surveys, the focus groups undertaken and also draws on evidence from the All Party Parliamentary Group on Autism’s (APPGA’s) The Autism Act, 10 Years On report, published in September 2019.

The 2 surveys asked about the views and experiences of people and organisations regarding where progress had been made under ‘Think Autism’, as well as what the priorities for future action should be. We have summarised the key findings from both surveys in section 3 of this document. Questions in the surveys were structured around 4 themes, which were developed in consultation with members of the DHSC’s Autism Strategy Executive Group, including self-advocates. The 4 themes are as follows:

• being part of the local community

• getting the right support at the right time

• developing skills and independence and working to the best of your ability

• progress and priorities for future action

The call for evidence also included 7 focus groups, which we commissioned Ambitious about Autism (AaA) and National Autistic Society (NAS) to undertake. These focus groups involved autistic people, including children and young people, as well as their families and friends. They looked to gather views on similar themes to the surveys and the findings from these focus groups are set out in section 4 of this document.

Findings from this call for evidence, including the surveys and focus groups, shaped our understanding of autistic people and their families’ experiences, and the actions we needed to take to improve their lives. This fed into the development of our new strategy ‘The National Strategy for Autistic Children, Young People and Adults: 2021 to 2026’ and its accompanying implementation plan for 2021 to 2022, which are published alongside this document.

Summary of findings

Our 2 surveys sought to understand autistic respondents’, carer respondents’ and organisations’ experiences and views in 4 areas. While the themes remained the same in both surveys, we tailored how the questions were worded in certain areas to ensure they were relevant to the group we were seeking views from.

We worked with autistic people, their families and autism charities to ensure the questions were as accessible as possible. The full list of topics across the 4 themes are set out in Annex B. We determined the 4 themes based on consultation with members of the DHSC’s Autism Strategy Executive Group, including self-advocates.

Being part of the local community

This theme focused on understanding how included autistic people felt within their local community. We defined a ‘local community’ as people who lived in the same area as the respondent. In particular, we wanted to know how well respondents felt autism and their needs were understood among different people, businesses and services with which they came into contact. We also wanted to know the extent to which respondents felt autistic people could take part in activities that mattered to them in their community, which included things like leisure activities, shopping and travelling, taking part in sport and going to school.

The community’s understanding of autism

Respondents told us that in general, people, organisations and businesses in their local area had a poor understanding of autism, and of autistic people’s needs. We asked respondents to rate different groups’ level of understanding from 1 (no understanding) to 5 (very good understanding). Autistic respondents rated family and friends as having the highest average level of understanding (3.6), while employers and the general public were rated as having the lowest (1.8). Businesses, including leisure centres, banks, restaurants and pubs, as well as employers, were also rated as having a poor understanding of autism (between 2.8 and 2.0).

Taking part in the community

The survey showed that the majority of autistic (56%), carer (57%) and organisation (65%) respondents felt that they, or the autistic person they supported could take part in only some of the things that were important to them in the community. 17% of autistic, 23% of carer and 9% of organisation respondents felt they, or the autistic person they cared for could not take part in the things that were important to them.

Some autistic respondents suggested that sensory issues caused by things like bright lights, loud noises, or busy places were a reason why they did not feel able to engage in the community. Others set out that busier situations, which caused them anxiety, made it difficult to engage in activities in the community. Equally, some carer respondents reported that it was difficult to access mainstream activities due to a lack of understanding about autistic people’s needs and felt that there were not enough alternative services available to meet needs instead.

To understand autistic people’s experiences in the community, we also asked about people’s experiences of hate crime, being bullied, discriminated or harassed. The majority of autistic respondents (53%) stated they had not experienced a hate crime. However, 87% had ‘sometimes’ or ‘often’ experienced bullying, 75% had ‘sometimes’ or ‘often’ experienced discrimination, and 52% had ‘sometimes’ or ‘often’ experienced harassment. Responses from carer respondents were similar. 76% reported that the person they cared for had either ‘often’ or ‘sometimes’ experienced bullying, discrimination (73%), hate crime (25%) or harassment (40%). Organisation respondents also reported similar findings: the person they supported had experienced bullying (69%), discrimination (68%), hate crime (34%) or harassment (46%) either ‘often’ or ‘sometimes’.  

Getting the right support at the right time

This theme focused on understanding autistic people’s ability to access information, care and support they need to live healthy and fulfilling lives. This included understanding people’s experience of getting a diagnosis and accessing support in the community, including from healthcare professionals for physical and mental health problems, and in schools. In addition, we wanted to know respondents’ views about a range of professionals’ understanding of autism and autistic people’s needs.

People’s experience of getting a diagnosis

Diagnosis waiting times

We wanted to understand how long people were waiting for their diagnostic assessments following referral, given the evidence from the autism self-assessment framework published in June 2019 showed that many autistic people were waiting longer than the National Institute for Health and Care Excellence’s recommended 13 weeks between referral and assessment. The majority of autistic (60%), carer (82%) and organisation respondents (44%) reported waiting more than 3 months to receive a first assessment for themselves or the person they cared for or supported.

Communication of diagnosis

We also wanted to know about how people’s diagnosis was communicated to them by healthcare professionals, and whether this was delivered in a way that they could understand. 61% of autistic respondents and 62% of carer respondents ‘strongly agreed’ or ‘agreed’ that this was communicated clearly in a way they could understand. Some autistic (9%) and carer (13%) respondents, however, did not understand what their diagnosis meant.

Pre and post-diagnostic support

We asked about whether autistic people and their families or unpaid carers got support before and/or after receiving an autism diagnosis and survey responses showed this varied significantly. Over a third (38%) of autistic respondents said they received no support before their diagnosis, while almost three-quarters (70%) of carer respondents said they did not receive any support before the person they cared for was diagnosed as autistic. Meanwhile, 34% of autistic respondents and 46% of carer respondents said they got no support after they or the person they cared for received an autism diagnosis.

Among autistic respondents, the most commonly reported type of support received before and/or after diagnosis was help with things like stress, anxiety and depression (31% pre-diagnosis and 23% post-diagnosis respectively) and a review of their medication (15% pre-diagnosis and 13% post-diagnosis respectively). In addition, some autistic respondents reported receiving support to improve or maintain their quality of life (16%) and support with education and training (10%).

Among carer respondents, the most commonly reported type of support received before and/or after diagnosis was support with education and training (13%), support to improve or maintain their quality of life (11%) and reviews of medication (5%). Some carer respondents reported that they were involved with local voluntary support groups, which provided advice and guidance. Some described that a lack of support for themselves as a carer had a knock-on effect on the autistic person they cared for, as they struggled to find time or space to support them effectively.

We also asked about the quality of support autistic people and their families or carers received before or after diagnosis, if they received this. 21% of autistic respondents said that the quality of support was ‘poor’, with 18% saying this support was ‘good’ and 15% reported that the support was neither ‘good nor poor. For carer respondents who did receive support, the reported quality of was similar: 24% felt the support was ‘poor’ or ‘very poor’, 15% felt it was ‘good’ or ‘very good’ and 14% felt it was neither ‘good nor poor’. Some felt they were left to work out for themselves what the diagnosis meant for the autistic person they cared for, whereas others attended training courses and face to face meetings with health professionals to discuss the diagnosis.

Support during education

As the new autism strategy is being extended to children and young people for the first time, we really wanted to understand the support autistic people received throughout their education, including in early years, such as nursery, primary school, secondary school or further and higher education.

Almost half of autistic respondents (47%) reported that they felt poorly supported in their education, while 19% said the support they received was mixed. Only 5% said they felt well supported. Some autistic respondents commented that receiving a diagnosis later in life contributed to not feeling well supported in education, while others suggested this was due to poor understanding of autism in schools or universities.

43% of autistic respondents, 45% of carers and 23% of organisations felt poorly supported when they or the autistic person they were supporting moved through the education system, for example, from primary to secondary school, with only a very small number of autistic respondents (4%), carer respondents (12%) and organisation respondents (8%) saying that they felt well supported. Some autistic respondents, carers and organisations also reported that there was a lack of support during transitions from childhood to adulthood.

Professional understanding of autism

Support from healthcare professionals

We wanted to find out how effective people felt healthcare professionals were at supporting them to manage physical or mental health problems. Across both physical and mental health, the proportion of autistic respondents who said that healthcare professionals were effective at supporting them with their health needs was very small. Only 6% of autistic respondents felt this in relation to physical health problems, while only 5% thought this for mental health problems.

Support from services

We wanted to know how well autistic people are supported by health, social care, education and employment services in adulthood (18 years and over). Over half (59%) of autistic respondents said they felt poorly supported or received mixed support, 26% of carer and 43% of organisation respondents reported that they felt the person they cared for or supported was poorly supported or received mixed support. This correlates with the All Party Parliamentary Group on Autism’s (APPGA) The Autism Act, 10 Years On report, which highlighted that autistic people often face a range of difficulties when accessing a range of services due to not being able to access necessary reasonable adjustments. In part, this was due to healthcare professionals’ lack of training in autism. Some respondents to the call for evidence also reported a lack of understanding of autism among healthcare professionals, while others reported that the information provided to them by healthcare professionals was unclear. Carers, families and organisations also commented that while there is a growing understanding about autism among professionals, it remains too variable.  

Understanding of autism among professionals

We also wanted to understand people’s views about the understanding of autism among professionals who may come into contact with autistic people throughout their lives. We asked respondents to rate different groups’, for example GPs, mental health professionals, social workers, Jobcentre staff and local authority housing staff, with the level of understanding from 1 (no understanding) to 5 (very good understanding). Among autistic respondents, the lowest mean ratings were magistrates (1.7), Jobcentre staff (1.6), probation staff (1.6), local authority housing staff (1.5) and local authority benefits staff (1.5). Among carer respondents, the lowest mean ratings were probation staff (1.6), local authority housing department staff (1.7), Jobcentre staff (1.8), local authority benefits staff (1.8) and magistrates (1.9). Among organisation respondents, the lowest mean ratings were magistrates (1.6), local authority benefits staff (1.6), local authority housing department staff (1.7), Jobcentre staff (1.8) and bank staff (1.8).

However, it should be noted that there was a high rate of non-respondents in regards to some professionals, for example more people answered about GPs than probation staff. This is likely due to the fact that some respondents had come into contact with certain services, such as GPs, more than others like probation staff. Respondents to both surveys raised the need for better autism training for the professionals listed in the question.

Access to Care (Education) and Treatment Reviews (C(E)TRs)

Since 2015, we have achieved a net decrease in inpatient numbers of 28% (as of June 2021, Assuring Transformation data). However, when compared to overall decrease in overall inpatient numbers, the data shows that the decrease for people with an autism diagnosis has not been at the same rate. As of the end of June 2021, there are still 1,200 people with an autism diagnosis in these settings (Assuring Transformation, July 2021).

We wanted to develop a better understanding of whether people in these settings had received a C(E)TR. These reviews should be provided, to:

• prevent avoidable admissions into inpatient care
• improve care for people in inpatient settings
• support people towards discharge back into the community as soon as they are well enough to leave

We asked whether people who had experience of being in inpatient mental health settings had received such a review. 65% of autistic respondents, 74% of carer respondents and 49% of organisation respondents said this question was not relevant to them or did not provide an answer.

We do not know whether this was because they had not been admitted as a mental health inpatient or because they had not heard of or received a C(E)TRs, it is important to note that C(E)TRs are not solely for those in inpatient settings. Of those that did respond, 26% of autistic respondents, 21% of carer respondents and 43% of organisation respondents said that C(E)TR was carried out for them or the person they care for. 8% of autistic respondents, 4% of carer respondents and 6% of organisation respondents were not sure if a C(E)TR was carried out, while 1% of autistic respondents, 2% of carer respondents and 2% of organisation respondents said they did not receive a C(E)TR. Written answers from some carers and autistic people supported this and stated that no C(E)TR was carried out.

Developing skills and independence and working to the best of your ability

This theme focused on understanding more about the support autistic people could access to help them develop the skills they need to live independent lives. This includes the availability of support when leaving school and trying to get a job, as well as support from employers.

Support when leaving school or college

Autistic respondents and carers provided similar results in this section. We asked respondents how well they, or the person they cared for, was supported when leaving school or college to make decisions about independent living and/or training or work. Almost half of autistic respondents (47%) said they felt poorly supported. The majority of carer respondents (87%) and half of organisation respondents (50%) said this question was not relevant to them or did not provide an answer. However, 5% of carers and 20% of organisations did report poor support.

Support to help find a job

We wanted to know whether people felt they or the person they cared for was supported to get a job if they wanted one. 47% of autistic respondents ‘disagreed’ or ‘strongly disagreed’ that they got this support. Among carer respondents, 16% ‘disagreed’ or ‘strongly disagreed’ that the person they cared for had been supported to get a job if they wanted one and 26% of organisation respondents ‘disagreed’ or ‘strongly disagreed’. Autistic and carer respondents raised issues around a lack of support in the transition from childhood to adulthood and difficulties in accessing reasonable adjustments in processes, such as interviews. It is important to note that this question was not answered by all respondents, which is likely due to the fact that some people cannot work.

We also wanted to understand whether autistic people who had a job felt their employers and colleagues were supportive towards them. The results were mixed, with no clear common experience. 16% of autistic respondents said their employers were not supportive, 22% felt the support was mixed. Meanwhile, 10% felt their employers were supportive, 10% had not declared their diagnosis, 3% were not sure, and 39% did not provide an answer to the question. Respondents reported varied access to workplace adjustments, with some feeling comfortable and productive as a result of adjustments made and others struggling because adjustments were not made.

Progress and priorities for future action

In this section we were interested in understanding areas in which respondents thought progress had been made since the publication of Think Autism to their lives, or the lives of the people they cared for or worked with. We also asked about what respondents wanted us to improve or take action on in the future. Generally, responses from autistic people and responses from families, carers and organisations were broadly aligned, with some areas of deviation which are highlighted below. Respondents were asked to reply to 3 free text questions and the key themes from these questions are drawn out below.

Inclusion in the local community

Improving public understanding of autism

Respondents emphasised the need for an increase in public understanding of autism, and proposed that there should be better, and more realistic media coverage of autism, especially about autistic girls and women. Respondents to both surveys appreciated autism-friendly sessions in places like leisure centres and cinemas, and autism training for staff in their communities. However, many respondents said there needed to be more of these activities, and a wider variety of inclusive activities beyond those services like leisure centres.

Improving inclusion of autistic people in their community

Many carer respondents said there had been improvements in community services and autism-friendly social events, and these had been effective in tackling loneliness and isolation. Some autistic respondents highlighted the benefits of local sports clubs in being able to make friends and proposed that coaches should be able to get autism training to make sport more accessible.

Health services

Both autistic respondents and carers set out that improving access to mental health services was a priority for them. While some reported receiving good mental health services, many felt services needed to be improved, including by being provided on a longer-term basis, being more consistent, better funded and more tailored to autistic people’s individual needs.

Autistic and carer respondents had a number of proposals for how to improve people’s access to mental health support. Many felt more mental health support should be available in schools, while others suggested reviewing the inclusion of autism as a grounds for detention within the Mental Health Act (1983). Certain respondents felt this would improve awareness that autism is not a mental health condition.

Some carer respondents also recognised that there needed to be better access to Child and Adolescent Metal Health Services (CAMHS) and more collaborative working between CAMHS and other services in local areas. This was an issue also raised by autistic respondents who felt more collaboration was needed, with some specifically suggesting that more collaborative working between physical and mental health services was needed. Respondents to both surveys felt that more and better training for mental health professionals in autism was required.

Getting the right support

Support from general practitioners (GPs)

Autistic respondents and carer respondents said the support provided by GPs and social workers was seen as variable. Many autistic respondents suggested that GPs did not have a good understanding of autism, as well as of existing pathways. Based on this, some suggested that diagnostic pathways should not require a GP referral and should instead allow for people to self-refer.

Some autistic respondents commented on the need for GP practices to become more inclusive to autistic people, by implementing initiatives like quiet areas and alternative ways to make appointments. Some carer respondents commented that even when the quality of GP support was good, this was of limited benefit if other services were not joined up.

Access to social care and community support

Some carer respondents also highlighted issues with accessing social care support and services, especially where these services had been closed down. Autistic respondents emphasised the need to tackle variation in the availability of social care and wider local authority support, for example housing across the country. There was also a strong view among autistic respondents that all social care staff receive autism training, with some proposing that autism advocates should be in place in local areas.

In addition, many autistic and carer respondents called for more consistent and joined up support to be made available. Some autistic respondents reported that a lack of support led them to seek out support from online sources which they said was useful but did not fully meet their needs. Carer respondents called for support groups for families and carers of autistic people to be made available. They also said that online services had made their lives easier and they emphasised the need for more services to be available online rather than only over the phone or in person.

Employment

Improving support to get into employment

Some autistic and carer respondents reported that employment opportunities had improved over time and that there was some employment support available through the voluntary sector. However, most respondents to both surveys agreed that access to employment support still needed to improve. Some autistic and carer respondents proposed that more tailored support and employment opportunities should be introduced to help autistic people find and keep a job, as well as progress in their careers. Emphasis was placed on the need for work opportunities to be appropriate, well-suited to individuals, and for this support to continue once people have a job.

Improving support from Jobcentres

Many autistic respondents also emphasised the need for better access to Jobcentres, with some calling for specialist job coaches and mentors in Jobcentres. There was one comment about using the interactions between Jobcentre staff and autistic people to help identify people at risk of a mental health crisis. Improved access to work experience, autism champions in the workplace, shadowing and coaching opportunities, as well as mandatory autism training for employees, were all suggested as ways of getting more autistic people into employment.

Education

Improving autism understanding in schools

Autistic and carer respondents were mixed in their views about how support in education needs to improve. Some autistic respondents felt excluded or had negative experiences at school and proposed that more training was needed for education staff to support autistic children. Carer respondents provided mixed accounts of access to college for the autistic person they cared for, and some suggested that specialist colleges for autistic people were needed as well as programmes to address bullying.

Making schools and support in education more accessible

Many autistic respondents and carer respondents also said that the physical environments in schools could be made more autism friendly and that access to reasonable adjustments should improve. They suggested ways in which this could be done, for example, by dimming lighting, controlling the noise, and providing more flexibility. Carer respondents suggested that support for transitions between schools and into higher education, as well as collaboration between education and other services needed to improve. Some carer respondents also highlighted that Education Health and Care (EHC) plans were difficult to access, and that the person they care for lost out on support if they were not classed as eligible for an EHC plan. Some suggested that these were based on academic ability and those who were more academically able often did not qualify for one. Some also suggested that more support should be in place specifically for the 18 to 25 age group and that penalties should be in place for Local Authorities who do not comply with the EHC plan timeframes. There were also suggestions that an EHC plan should be provided following a diagnosis and should be specific to the needs of the autistic child.

Key findings from focus groups

We commissioned AaA and the NAS, to hold focus groups to find out more about autistic children, young people and adults, as well as their families’ and unpaid carers’ experiences across different areas of their lives. In addition, these focus groups were an opportunity to explore people’s views about where progress had been made since Think Autism, and what more needed to be done to improve support for autistic people across England in the future.

AaA held 2 focus groups with young autistic people (aged between 13 and 25) during July and August 2019. These young people were from AaA’s Youth Patron group, which is a group of autistic young people from across the country, and learners from TreeHouse School, which is a special school for children and young people with complex needs, aged 13 to 19. Overall, the organisation engaged with 30 young people through its focus groups, including 15 youth patrons and 15 TreeHouse learners. Meanwhile, the NAS held 4 focus groups in Thurrock, Newham, Chester and Dartford and Gravesham, during May 2019. In addition, they held a separate focus group with their Young Ambassadors Group, which is made up of young autistic people. They engaged with 33 autistic people and their families from a range of ages and backgrounds.

Participants across the focus groups discussed similar topics, which broadly aligned with the topics we consulted on through the surveys (as outlined in section 3 of this document). In the NAS focus groups, autistic people and their families discussed experiences of and views about:

1. healthcare
2. education
3. mental health
4. social care

We have set out the findings from these groups into different themes below. 

Experiences of diagnosis

Participants from all focus groups reported a range of different issues which they faced when receiving a diagnosis. Overall, attendees at the NAS focus groups agreed that health professionals communicated the diagnosis clearly in the moment.

However, there was a disparity across all the focus groups when it came to the information a person and their family needed after their diagnosis and the information they received. Autistic people and their families said they felt that once diagnostic assessments were completed, there was a lack of communication and support from healthcare professionals, in some cases a lack of professional understanding was also reported. Attendees of the AaA focus groups also reported issues with how their diagnosis was communicated. Many found the way this was communicated upsetting and negative, and a few reported that staff did not communicate clearly and/or in an empowering way and they often only addressed their parents. Both autistic people and their families involved in the focus groups reported a lack of post-diagnostic services or help to understand what the diagnosis meant. The NAS focus groups also raised specific issues with diagnostic overshadowing, or people’s needs being seen exclusively as a result of their autism.

The amount of time people had to wait for an autism diagnosis varied quite substantially between the focus groups. In particular, in the NAS, Thurrock focus group, there seemed to be problems around waiting times, with reports of people waiting several years to get a diagnosis for them or their children. Attendees also reported that the pathways for diagnosis were not straightforward and there was a shortage of diagnosticians due to an increase in demand. Attendees in the NAS focus groups also felt there was a lack of autism understanding in different parts of the health system, leading to long waiting times.

Attendees in the NAS focus groups said that in order to improve services, healthcare professionals would need more training on autism so that they have a better understanding of autism and how to tailor the support they provide to autistic people. All focus groups agreed that post-diagnostic support and support to help people understand their diagnosis should be improved and waiting times should be reduced. The NAS focus group attendees suggested that a central point of contact should be identified to help the autistic person though the diagnosis. AaA focus group attendees felt that diagnostic pathways should be clearer and there should be more of an emphasis on the positive aspects of being autistic within a diagnosis report, rather than on perceived deficits.

Experiences of health services and social care

AaA focus group participants reported benefits of having consistent staff in hospitals or inpatient settings, so that daily routines could be honoured and additional needs understood, resulting in improved wellbeing. Some suggested that hospital passports and being seen in the same room each time also helped to improve experiences of services.

AaA focus group participants also reported that staff often failed to consider any reasonable adjustments that an autistic person may need. For example, participants reported that staff had a lack of patience, treated them as if they were wasting time or attention seeking and did not explain what they were doing before they did it. All the participating young people asked reported that they struggled with long waiting times when seeking healthcare, for example, in hospital waiting rooms, which increased anxiety, and that healthcare staff had ignored their concerns by saying it was ‘because they were autistic’.

NAS and AaA focus group participants set out that in order to improve services, all healthcare staff should be trained in autism awareness and understanding, and they should receive extra practical training on how to support people and make adjustments to the care they provide.

The NAS focus group participants raised issues about accessing social care support. Many were not aware what social care was or how to access any support. Only a few people said they did have access to social care or wider community-based support, and it was clear more parents had access to support for their children than autistic adults for themselves. In one NAS focus group, autistic people reported that they were told they would not be found eligible for support because autism is not automatically considered a disability under the Equality Act. Participating adults were not sufficiently aware of their rights under the Care Act (2014). While a few unpaid carers did have access to respite care, they said this was not sufficient to meet their needs.   

Experiences of mental health support

Most people across the NAS focus groups reported that they’d had mental health problems at some point. This included autistic people (both children and adults) as well as family members. From unpaid family carers’ perspectives, the strain of caring and trying to access the right support for their children was a contributing factor to poor mental health. For autistic people, there was a general sense that external factors, like society not understanding autistic people, impacted greatly on their mental health.

The vast majority of people in the NAS focus groups felt there was not enough community mental health support on offer to autistic people and their families, and that this had an adverse impact on people’s wellbeing. The general view across all focus groups was that a person has to reach crisis point before they receive any mental health support. AaA focus group attendees suggested that low level support in the community should always be available to ensure young people do not reach a crisis point. NAS focus group attendees also spoke about the need for more community-based services.

NAS focus group attendees reported not having anywhere to go if they reached crisis point and many felt that A&E is not an autism-friendly environment. Attendees called for a safe place and a point of contact for autistic people when they are at crisis point, to avoid being admitted to a mental health hospital.

Some AaA focus group attendees reported that some of the staff they encountered had a limited understanding of autism and some even saw mental health problems as an inevitable part of being autistic. All focus groups highlighted that more training would help professionals better understand the needs of autistic people. The AaA focus groups also reported that there was a lack of communication between services, often the care received was impersonal and some staff were unwilling to implement reasonable adjustments.

AaA focus group attendees also reported that there was a lack of consistent support, especially following discharge from inpatient care, a lack of relevant adult social care and variation of services depending on geographical location. NAS focus group attendees agreed and felt that there should be more standardisation of services across the country.

The NAS focus groups highlighted quality issues with the support available for mental health problems. Some attendees talked about wanting to access talking therapies but often these were not available, others said they were only offered medication. For those who had been able to access talking therapies, some felt that mental health professionals did not see autism as distinct from mental health and did not understand their specific needs.

Experiences of school or college and transitions

The AaA focus groups were made up of autistic children and young people, therefore they provided a more detailed account of their time at school or college than the NAS focus groups.

When asked what went well, AaA focus group participants spoke about the benefits of having staff with the right training who understood their needs and having a keyworker or Learning Support Assistant (LSA). They also felt that getting personalised encouragement, being allowed to leave lessons early to avoid corridor crush and having their Teaching Assistant or Special Educational Needs Coordinator (SENCO) present at their multi-disciplinary team meetings was extremely helpful.  

AaA focus group participants reported that they struggled to get the right support without an official diagnosis. Participants from these focus groups also reported that staff did not identify signs or behaviours of autism and were not trained to provide the right levels of support. Some reported being singled out or picked on because they were autistic, by teacher and peers.

Some participants from all focus groups reported concerns about the support available during transition points in life. This was a particular concern for the parents and families in the NAS focus groups, with many reflecting that these periods can be particularly difficult for autistic people. Transitions were seen as cliff-edges in terms of support as often the support available suddenly changed or completely disappeared.

NAS focus group participants reported that there were times of heightened uncertainty for both the autistic child and the wider family unit. AaA focus group participants highlighted particular issues when transitioning into employment and NAS focus groups felt that there was even less support available for autistic adults than there was for autistic children. AaA focus group participants suggested that all staff who encounter autistic young people, in a school or college, should receive autism awareness and understanding training.

NAS and AaA focus groups raised concerns around EHC plans. Some AaA focus groups felt that these plans were not honoured and the extra support that was needed was not provided. NAS focus group participants reported mixed experiences of EHC plans. Some did not have access to one, and for those that did they felt they had to fight to get the support they needed.

NAS focus group participants reported a lack of transparency when it came to the process of drafting EHC plans. Parents were not involved in the development of the plans, which sometimes meant they did not reflect the child’s needs. NAS focus groups also highlighted that there was no one held accountable if EHC plan deadlines were missed or not reviewed and it was not clear who was monitoring the quality of the plans. Some families felt they were not informed about what the EHC plan meant for their child. NAS focus groups suggested that there was a wider problem about a lack of involvement from the health and care systems, which many felt meant EHC plans ended up just being an education plan. Others found that if their child was seen as academically able to succeed in school, they were often ineligible for support, and that wider social needs or support were overlooked. There were also concerns about the lack of ambition for autistic children and young people and what they could achieve with the right EHC plan.  

Experiences in the community

Questions about people’s access to the community were only asked of the AaA focus groups. Participants emphasised that specialised events like quiet hours in shops, museums and screenings in cinemas, as well as safe space cards in certain areas that allow people to take shelter or escape from crowds and noise helped them to take part in their community more.

Participants were in agreement that more specialist events and quiet openings were needed to help others access their community. They also highlighted the positive impact of initiatives, like sunflower lanyards in airports and supermarkets, as they were able to access support without asking. Community trips and enterprise activities to learn new skills were also identified as positives. The AaA Young Patrons developed the Include Autism toolkit because they wanted inclusive community spaces and groups.

Participants did identify difficulties they faced in environments that could not be adapted and difficulties with sensory needs, like in busy and noisy town centres which are difficult to navigate alone. Some reported having to mask to fit in and access services. Others reported that they were not able to take part in mainstream groups which resulted in isolation and loneliness.

Annex A: who responded to the call for evidence

Surveys

In total, there were 2,745 responses to the call for evidence:

• 54% of the respondents were female
• 37% were male
• 3% were non-binary
• 3% classified themselves as ‘other’
• 3% preferred not to answer or did not answer

Ethnicity

• 87% of respondents were white

• 7% were from ethnic minority groups

• 6% preferred not to answer or did not answer

Age

• 4% of respondents were aged 19 and below
• 91% of respondents were between the ages of 20 and 64:
  • 1% were between the ages of 20 and 24
  • 13% were between the ages of 35 and 44
  • 39% were between the ages of 45 and 54
  • 33% were between the ages of 55 and 64
• 11% were 65 years or over
• 3% did not answer

Autistic people

18% of respondents (488) to the surveys were autistic people.

Unpaid carers

74% of respondents to the call for evidence were carers (2,026). The vast majority of carers who responded were female (92%).

Almost all the carers who responded were providing unpaid care (95%), and almost all carers (94%) were providing care for their child.

Paid carers

There was a relatively small proportion of respondents who were providing paid care (5% of respondents). These were spread across the paid role categories.

Homecare workers were the most common, accounting for nearly a third (31%) of responses from people in a paid caring role. However, from the further information box some parents or family members provided care have noted they are paid benefits for their caring responsibilities.

Organisations

8% of respondents (231) responded to the call for evidence on behalf of an organisation. Of this, 26% identified as being from the education sector.

Annex B: breakdown of questions asked, and responses given in call for evidence

This table sets out the key results from each group of respondents, analysis of questions is split for autistic, carer and organisation respondents.

Autistic respondents answered survey 1, carer and organisation respondents answered survey 2. An initial question, in survey 2, which determined whether a respondent was a carer or an organisation facilitated this split.

Questions are broken up into the sections which they are reported in throughout the report. Questions on progress and priorities for future action have not been included here. This is because responses to these questions were qualitative, written answers which have been summarised in the main text.

It is important to note that some questions had a much small number of respondents, so therefore generalisations cannot be made based on percentage of participants that responded to the questions.

Being part of the local community

Topic	Number of autistic respondents	Number of carer respondents	Number of organisation respondents	Results from autistic respondents	Results from carer respondents	Results from organisation respondents
Have you told people that you are autistic?	485	2,024	231	82% of respondents said they had disclosed, 16% said they had not and 2% did not provide an answer.	50% of respondents said they had disclosed, 48% said they had not and 2% did not provide an answer.	54% of respondents said they had disclosed, 34% said they had not and 12% did not provide an answer.
Taking part in the things that are important to the autistic person in the community	485	2,024	231	56% of respondents felt they could take part in some but not all things that are important to them in the community, whereas 17% felt they could not, 23% felt they could take part in all important things and 4% were unsure or did not provide an answer.	57% of respondents felt the person they cared for could take part in some but not all things that are important to them in the community. 23% felt they could not, 17% felt they could take part in all important things, 3% were unsure or did not provide an answer.	65% of respondents felt the person they cared for could take part in some but not all things that are important to them in the community. 9% felt they could not, 17% felt they could take part in all important things, 10% were unsure or did not provide an answer.
Experiences of hate crime, bulling, discrimination or harassment	485	2,024	231	Respondents reported that they had either often or sometimes experienced bullying (87%), discrimination (75%), hate crime (27%) or harassment (52%).	Respondents reported that the person they cared for either often or sometimes experienced bullying (76%), discrimination (73%), hate crime (25%) or harassment (40%).	Respondents reported that the person they supported had either often or sometimes experienced bullying (69%), discrimination (68%), hate crime (34%) or harassment (46%).
Understanding of autism (5 being very good understanding, 1 being no understanding)	485	NA	231	Family and friends – mean score 3.6. Staff running youth activities – mean score 2.8. Staff at leisure centres – mean score 2.5. Staff in shops, banks, restaurants and pubs – mean score 2.4. Transport staff – mean score 2.3. Employers – mean score 2.0. The general public – mean score 1.8.	Question not asked of carers	Family and friends – mean score 3.8. Staff running youth activities – mean score 3.0. Staff at leisure centres – mean score 2.5. Other leisure activity staff – mean score 2.3. Staff in shops, banks, restaurants and pubs – mean score 2.2. Transport staff – mean score 2.1. Employers – mean score 2.1. The general public – mean score 1.9.

Getting the right support at the right time

Topic	Number of autistic respondents	Number of carer respondents	Number of organisation respondents	Results from autistic respondents	Results from carer respondents	Results from organisation respondents
Waiting times for initial assessment following referral	485	2,024	231	10% waited less than 3 months, 21% waited between 3 and 6 months, 17% waited between 7 and 12 months, 13% waiting over a year, 9% waiting over 2 years and 17% were not sure or did not provide an answer. 13% had never been assessed.	6% waited less than 3 months, 20% waited between 3 and 6 months, 20% waited between 7 and 12 months, 22% waited over a year, 20% waited over 2 years and 11% were not sure or did not provide an answer.	4% waited less than 3 months, 6% waited between 3 and 6 months, 14% waited between 7 and 12 months, 14% waited over a year, 10% waited over 2 years and 51% were not sure or did not provide an answer.
Communication of diagnosis	485	2,024	NA	61% either agreed or strongly agreed that their diagnosis was communicated clearly. 9% either disagreed or strongly disagreed, 8% said neither and 22% did not know or did not provide an answer.	62% agreed or strongly agreed that the diagnosis was communicated clearly. 13% strongly disagreed or disagreed, 10% said neither and 15% did not know or did not provide a response.	Question not asked of organisations
Quality of pre and post-diagnosis support	485	2,024	NA	21% said the support they received before or after diagnosis was poor, 18% said the support was good, 15% said it was neither good nor poor, 10% were unsure and 36% did not provide an answer.	24% felt the support was poor or very poor, 15% felt support was good or very good, 14% felt it was neither good nor poor and 46% were not sure or did not provide a response.	Question not asked of organisations
Support in education	485	2,024	231	47% felt poorly supported in their education, 19% received mixed support, 5% felt well supported, 3% were unsure and 26% said the question was either not relevant to them or they did not provide an answer to the question.	46% felt poorly supported in their education, 41% received mixed support, 11% felt well supported, 1% were unsure and 1% said the question was either not relevant to them or they did not provide an answer to the question.	23% felt poorly supported in their education, 49% received mixed support, 10% felt well supported, 19% were unsure or said the question was either not relevant to them or they did not provide an answer to the question.
Support when moving within or between schools	485	2,024	231	43% felt poorly supported when moving within or between schools. 9% received mixed support, 4% felt well supported, 6% were unsure, 38% said the question was not relevant to them or did not provide an answer.	45% felt poorly supported when moving within or between schools. 27% received mixed support, 12% felt well supported, 2% were unsure, 14% said the question was not relevant to them or did not provide an answer.	23% felt poorly supported in their education, 36% received mixed support, 8% felt well supported, 33% were unsure or said the question was either not relevant to them or they did not provide an answer to the question.
Effectiveness of support from healthcare professionals for physical health problems	485	2,024	231	10% could not access support, 16% felt it was not effective, 32% felt it was mixed, 6% felt it was effective, 6% were not sure and 30% said this was not relevant or did not provide an answer.	7% could not access support, 16% felt it was not effective, 33% felt it was mixed, 8% felt it was effective, 3% were not sure and 33% said this was not relevant or did not provide an answer.	2% could not access support, 10% felt it was not effective, 36% felt it was mixed, 8% felt it was effective, 12% were not sure and 33% said this was not relevant or did not provide an answer.
Effectiveness of support from healthcare professionals for mental health problems	485	2,024	231	10% could not access support, 30% felt it was not effective, 39% felt it was mixed, 5% felt it was effective, 5% were not sure and 12% said this was not relevant or did not provide an answer.	17% could not access support, 27% felt it was not effective, 20% felt it was mixed, 4% felt it was effective, 5% were not sure and 26% said this was not relevant or did not provide an answer.	12% could not access support, 22% felt it was not effective, 33% felt it was mixed, 3% felt it was effective, 9% were not sure and 21% said this was not relevant or did not provide an answer.
Care and Treatment review or Care, Education and Treatment Review (C(E)TR) use in inpatient care	485	2,024	231	65% felt this question was not relevant or did not provide an answer. 8% were unsure if a C(E)TR was undertaken, 26% said a C(E)TR was undertaken and 1% said one was not.	74% felt this question was not relevant or did not provide an answer. 4% were unsure if a C(E)TR was undertaken, 21% said a C(E)TR was undertaken, and 2% said one was not.	49% felt this question was not relevant or did not provide an answer. 43% said a C(E)TR was undertaken, 2% said one was not and 6% were unsure.
Support from health, social care, education and employment services when 18 plus	485	2,024	231	42% felt poorly supported, 17% received mixed support, 1% felt well supported, 5% were unsure and 35% said the question was not relevant to them or did not answer.	18% felt poorly supported, 8% received mixed support, 2% felt well supported, 1% were unsure and 72% said the question was not relevant to them or did not answer.	19% felt poorly supported, 24% received mixed support, 2% felt well supported, 6% were unsure and 48% said the question was not relevant to them or did not answer.
Professionals’ understanding of autism (5 being very good understanding, 1 being no understanding)	485	2,024	231	Lowest mean ratings were: local authority benefits staff (1.5), local authority housing department staff (1.5), probation staff (1.6), Jobcentre staff (1.6) and magistrates (1.7).	Lowest mean ratings were: probation staff (1.57), local authority housing department staff (1.69), Jobcentre staff (1.75), local authority benefits staff (1.8) and magistrates (1.9).	Lowest mean ratings were: magistrates (1.62), local authority benefits staff (1.63), local authority housing department staff (1.74), Jobcentre staff (1.75) and bank staff (1.75).

Developing skills and independence and working to the best of your ability

Topic	Number of autistic respondents	Number of carer respondents	Number of organisation respondents	Results from autistic respondents	Results from carer respondents	Results from organisation respondents
Support when leaving school or college to make decisions about independent living and/or training or work	485	2,024	231	47% felt poorly supported, 10% received mixed support, 3% felt well supported, 4% were unsure and 36% said the question was not relevant to them or did not answer.	5% felt poorly supported, 3% received mixed support, 1% felt well supported, 1% were unsure and 87% said the question was not relevant to them or did not answer.	20% felt poorly supported, 22% received mixed support, 3% felt well supported, 6% were unsure and 50% said the question was not relevant to them or did not answer.
Support to get a job (if the autistic person in question wanted one)	485	2,024	231	32% of respondents strongly disagreed that they had been supported to get a job if they wanted one, 15% disagreed, 8% neither agreed or disagreed, 7% agreed, 3% strongly agreed, 6% did not know and 29% did not answer.	11% of respondents strongly disagreed that they had been supported to get a job if they wanted one, 5% disagreed, 3% neither agreed or disagreed, 1% agreed, 1% strongly agreed, 2% did not know and 76% did not provide an answer.	11% of respondents strongly disagreed that they had been supported to get a job if they wanted one, 15% disagreed, 11% neither agreed or disagreed, 8% agreed, 3% strongly agreed, 3% did not know and 50% did not provide an answer.
Support from employer	485	2,024	231	16% felt employers were not supportive, 22% felt the support was mixed, 10% felt their employers were supportive, 3% were not sure, 10% had not declared their diagnosis, and 39% did not answer the question.	2% felt employers were not supportive, 4% felt the support was mixed, 3% felt their employers were supportive, 2% were not sure, no one said they had not declared their diagnosis, but 89% did not provide an answer the question.	2% felt employers were not supportive, 20% felt the support was mixed, 4% felt their employers were supportive, 10% were not sure, less than 1% had not declared their diagnosis, and 63% did not answer the question.