Sarah-Francis Soutar – Written Evidence (AAC0174)

I wish to thank you for inviting members of the Autism Champions Programme to attend the House of Lords meeting on Monday 24th of March 2025 to review the enquiry into the Autism Act of 2009. The members and I were delighted to be invited and we appreciate you for sharing thoughts on the subjects of autism and looking into levels of support within the National Health Service (NHS), employment, health care, housing and education. 

When the Autism Act was passed in November 2009, the law promised that autistic individuals would have the right in receive assistance from social services, have equal opportunities in education, have support in employment, have the right to life in independent/social/supported living, with support from social networks, have the right to appropriate health care, and protection against discrimination and hate crime. However, since this legislation was passed fifteen years ago, I have felt in every area much work remains to be done. Now, in 2025, where fears are growing following the announcement of the Government’s proposed decision to cut Personal Independence Payments (PIP) and Disability Living Allowance (DLA) benefits. It is a challenging time for the autistic community as we worry whether the Government is taking into account the possible consequences and the impacts of these proposed cuts. Our major concern is the inevitable decline in physical and mental health for autistic adults and their families who rely on benefits. 

Following my visit to the Houses of Parliament with the Autism Champions Programme, I was invited to share my story by members of the Lords. 

Despite the challenges I faced in mainstream education, I did obtain GCSE grades and a BTEC. In further education, at Chickenshed Theatre Company, I gained a bachelor arts degree in Inclusive Performing Arts. At Chickenshed, I felt that this was a community where I felt respected and included.

After education, I struggled to find employment for three years. I wanted to get out in the world and find a job either in the arts or with childcare. At one interview, I was told by a deputy head at a local SEN school that the school would never employ someone like me - because of my learning disabilities (including my autism). This was hurtful and for years it made me feel like I wasn’t good enough.

After lockdown, I joined a charity organisation called the Sunnyside Rural Trust. Sunnyside Rural Trust is a charity organisation and social enterprise for young people and adults with learning disabilities. With over 170 vulnerable people, young people and adults (who are referred to as trainees) are offered work experience to acquire skills in rural and retail activities like horticulture, animal care and outside contract work for other organisations including the Zoological Society of London and Dacorum Borough Council. 

I have been with Sunnyside for four years as of 2025, and through the organisation, I have gained experience and enjoy gardening because it makes me feel challenged! I have recently been employed by this organisation, working on their publicity team with the role Trainee Voice Lead. This means that I represent the trainees and participate in activities such as attending the Royal Horticultural Society flower shows and writing a blog for the trainees. 

I’ve also gained an extra role as a swimming teaching assistant for Everyone Active. I’ve worked at the centre for three years. At Hemel Hempstead leisure centre, we run Special Educational Needs swimming sessions for children between pre-school and stage 3. As of 2025, we are the only Everyone Active leisure centre in the country to have these classes. I assist in both SEN and mainstream swimming lessons, which has given me experience in working with the children and sharing my ideas with teachers on different swimming techniques to help them bring confidence in the water.

Seeking employment was a very long road to go down .However, I have been fortunate to have Sunnyside and Everyone Active to continue supporting me and I enjoy my time working as Trainee Voice Lead and Swimming Teaching Assistant.

With regard to the NHS, I felt my experiences with them were challenging. They were challenging because of the lack of understanding of autism and training in some hospitals. I have family members who have worked in the National Health Service and although I got support and health advice from my mother, I felt that post Covid-19 lockdown, it was the only advice I would get. This includes the limited access of meeting my local GP and seeing a neurologist because of my epilepsy diagnosis. And there was one experience I had which made me feel disrespected. 

In Christmas 2015, I had a sudden seizure at home and I had to be admitted to hospital. After being admitted, I felt I was being neglected and the hospital staff didn’t ask if I needed reasonable adjustments. I was left in the A & E room where I felt overwhelmed by the bright lights and the noise. I felt dizzy and in pain as I injured myself whilst having the seizure. When I was transferred to the day ward, I spent nine hours on a bed with an IV drip in my arm. Despite it being necessary to hydrate myself, I was in a lot pain. I was afraid to move my arm or turn over on my sides to avoid the bright lights in the ward. I had to spend the time laying still on my back and having my eyes closed. I couldn’t ask for the lights to be switched off and my parents had to ask on my behalf but the staff denied this request. 

We did turn off the lights, but a few seconds later, a nurse switched them back on and stated that they had to stay on. I was not offered eye protection and this was after having a grand mal seizure when I was ultra-sensitive to light and sound. I could not eat from the food trolley either due to my dietary requirements, being gluten and dairy free. No alternative was offered. As a result, my dad had to go to the hospital shop where the only gluten free food they sold for lunch was a packet of crisps and an apple with a bottle of water. 

There was one positive outcome. Following this very challenging experience, I was referred to a neurologist where I went on a diagnosis process. I was diagnosed with epilepsy nine months later. I later shared my story in a book called “How to Make It as a Student Nurse” by Claire Carmichael, which is a guidebook now being given to students who are study nursing at university. 

Having shared my story, I felt like I was being listened too.

However, I have found it hard to visit the GP following the Covid-19 pandemic. Because of the continuing adjustments to having appointments on the telephone instead of face-to-face (which were introduced to encourage social distancing) and having to wait two weeks for appointments, it is becoming difficult to gain access to medical care for me and for my Mum who attends my appointments as my carer and advocate. I worry about the having to attend medical appointments in the future if I lose my Mum. I am concerned about not receiving support if my parents pass away with my mum approaching her 70’s and my dad approaching his 80’s. 

I am not alone in this, as this is one of the three main concerns within the autistic community. I recently attended an event with Hertfordshire County Council called The Big Health Get-Together where the council led the event to find autistic adults’ opinions on access to health care. While I

was there, I saw concerns from autistic adults had including having limited access to have face-toface appointments with their local GP’s and needing help and support when a parent or carer dies. I think difficulty in accessing health care is becoming an increasingly common issue. Although adults are being listened too, many are concerned if there would be available support especially if a parent or carer passes away.

Housing is the recent issue for many autistic people including myself. Last year after applying for independent living on the Dacorum Council Housing list, I was taken off the council housing list by Hertfordshire County Council without agreement or notice. When we asked why, my parents and I were told that because of my learning disabilities, I wouldn’t have been able to manage a tenancy. We were advised to talk to my social worker to discuss supported living accommodation. With her support, we found a local property operated by a private company. When we approached them, the company promised me that with the three houses they purchased on the same street, I would qualify for moving into a house, sharing it with five women with moderate needs. However, after the application process, my parents and I discovered that if I moved in, there were rules as follows: 

         I wasn’t able to receive visitors at the house except by appointment with permission from the housing staff

         I was given a bedroom on the top floor with uncomfortable environmental settings - this included hot temperatures in the summer (as there were only two small windows which residents aren’t allowed to open) 

         There were no locks on the bedroom door; this meant that I would receive little privacy and people can walk in at any time

I also discovered that company had not been entirely honest with me, my parents and the council when I discovered that one of the residents that I’d be sharing with was an older man with complex needs. The two women who were there on my introductory visit both had severe needs and with two carers each. I would not have felt secure in this environment. We rejected this option.

I am continuing to seek accommodation and would like to find somewhere that allows me to live independently, but I have to keep asking my social worker if this process is being moved forward. Again, my parents are speaking on my behalf and I worry that if I have no support for independent living (and living on my own with no carers or a future partner), I fear that I might live in an unsuitable setting and my physical and mental health will decline. 

In other autistic adults’ perspectives, I’ve heard that private companies who are supposed to support and protect vulnerable people in supported living are taking advantage of individuals and their families/carers. 

Under the Care Act of 2014:

         Accommodation to be “provided to all people who appear to need care and support, regardless of their finances or whether the local authority thinks their needs will be eligible

         Accommodation to needs adult’s needs focusing on the outcomes they want to achieve and how supported living can impact their wellbeing

         How assessments “must be carried with involvement from the adult and their carer or someone else they nominate”

Independence for supported, social and independent living is taken away by longer waiting lists, and little or no communication from Dacorum Borough and Hertfordshire County Councils. I also believe that more regular training and staff assessments need to be carried out to ensure that autistic individuals feel safe, and have trust with the staff who are responsible for supporting them 

Raising awareness on these topics has made me realise how little support everyone is getting, especially in employment. In 2021, The Office for National Statistics (ONS] published a report which regarding disabled adults included the following: 

         75% per cent of adults live with their parents, compared with only 16% of disabled people who are in supported living, social living or independent living

         Only 22% per cent of affected adults are in any kind of employment, compared to over 80% of non-disabled people 

In addition to employment, the Buckland Review of Autism Employment [published by the Department for Work and Pensions in February 2024] included these following figures: 

         3 in 10 autistic adults are in employment, compared to 5 in 10 for all disabled people and 8 in 10 for non-disabled people

         Autistic people face the largest pay gap of all disability group

         Autistic graduates are twice as likely to be unemployed after 15 months as non-disabled graduates with only 36% continuing to seek employment

         Autistic graduates are most likely to be overqualified for the job they have while most likely be on zero-hour contracts instead of being in a permanent role

I also worry about registered charities not receiving the funding they need to have more activities to support autistic and learning disabled young people and adults. For Sunnyside especially (because of the wonderful support they have given me), I wish they could receive funding to begin new horticultural programmes or groups for supporting children and young people who can’t go to school or who are home schooled. Having this support could increase mental and physical health wellbeing as well as gaining confidence for future development and employment. I’m not sure if this will happen but I have a feeling if it did (through a government scheme or elsewhere), it would make a huge difference to someone’s life. 

I hope that by sharing my experiences whilst sharing my opinions during your review of the Autism Act of 2009 that reasonable adjustments would be made to allow autistic children, young people and adults to receive the support and care they need. I wish everyone on the board luck for the meetings and I look forward to hear about the process of the review of the Act. 

28th March 2025

Dear Baroness Rock, 

I wish to thank you for inviting members of the Autism Champions Programme to attend the House of Lords meeting on Thursday 24th of April 2025 to review the enquiry into the Autism Act of 2009. It was an honour to speak in front of the committee to share our thoughts on the act’s progress since it’s legalization in 2009 and looking into levels of support within the National Health Service (NHS), employment, health care, housing and education. 

Since the Autism Champions Programme members had a limited time in sharing our cases and thoughts, I am grateful to have been given the opportunity to write to you about my case studies in housing, health care and employment. In addition, I would like to take this opportunity to share my thoughts on education and health care. 

Benefits & the Possible Results from the 2025 Budget

When the Autism Act was passed in November 2009, the law promised that autistic individuals would have the right to receive assistance from social services, have equal opportunities in education, have support in employment, have the right to live in independent/social/supported living, with support from social networks, have the right to appropriate healthcare, and protection against discrimination and hate crime. However, since this legislation was passed fifteen years ago, I have felt in every area much work remains to be done. Now, in 2025, fears are growing following the announcement of the Government’s proposed decision to cut Employment Support Allowance (ESA), Universal Credit, Personal Independence Payments (PIP) and Disability Living Allowance (DLA) benefits. It is a challenging time for the autistic community as we worry whether the Government is taking into account the possible consequences and the impacts of these proposed cuts. Our major concern is the inevitable decline in physical and mental health for autistic adults and their families who rely on benefits.

When the Spring Budget was announced by Rachel Reeves in March 2025, it resulted in fear and uncertainty. I myself was concerned about this announcement because it brought up concerns on the eligibility of the benefits I have been receiving for years.

As of May 2025, I am eligible for DLA benefits because of my autism and epilepsy - however because of the uncertainty involving ESA benefits, I am concerned about the changes to further benefits due to my autism. I currently live with my parents where I pay the sum of £93 a week in rent and food. I also work 4.5 hours a week, working part-time. Having two separate jobs whilst taking an extra role as a trainee (a non-paid role), I am terrified of what would happen if my ESA benefits are taken away, especially if they are taken without notice. 

Autistic individuals, whether living alone or with an advocate (who may be a parent, a carer or a guardian), rely on benefits like ESA, DLA and PIP for financial support. If benefits are lost following assessments, it will result in a living crisis resulting in lack of or no support (following a loss of an advocate) and the fear of homelessness.

According to the National Development Team for Inclusion (NDTI), figures in their report (published as the Neurodiversity and Homeless Executive Summary in July 2023) show that 12.3% autistic people are homeless in comparison with the 1 - 2% of the general population. One of the reasons for this is the difficulty of staying on top of filling out complex benefit forms.  

This issue was addressed during Prime Minister’s Questions in March and April 2025. Despite one response, the Prime Minister in one session saying that the Labour Government will make sure people with the most severe disabilities and health conditions won’t face the prospect of “being constantly reassessed again” and that the extra support is based on the impact of health condition or disability, not the capacity to work. 

But since responses on the question of the benefits hasn’t been concluded, I fear that there might be rising numbers of unemployment and homelessness if benefits are lost without support being put in place first. There should have been a full plan prior to making a decision to cut the benefits in the spring budget? This is a question that, I believe, must be prioritised.

SEND and Mainstream Education & Extra Curriculum Activities

In terms of education for SEND and mainstream schools, I want to address the education that impacts autistic children and young people up to the age of 18 years. However, this is only based on my experiences from being in secondary school whilst studying for my GCSE and BTEC level 1 studies between 2009 (when the act was passed) to 2012. 

Whilst in education, I attended both primary and secondary mainstream schools. Prior to the the Autism Act of 2009, I was receiving 1:1 tuition with one teaching assistant in primary school, but this changed in secondary school. When I was in secondary school, I had multiple teaching assistants for separate classes and during Learning Support lessons. I don’t know how the system was run but from a personal point of view, I found it confusing and it was a struggle - which occasionally affected my mental health. I never confessed this to my parents or my teachers, but not knowing how to speak about caused me anxiety.

However, I was given an opportunity to have a private tutor who had connections to my family. She and I would have private lessons three days a week - and whilst I struggled with chemistry, physics and maths, I found that having her boosted my confidence. She would give additional sessions including cooking and she would support me in extra-curricular activities where I would have separate tutors in musical theatre and public speaking. She even supported me to join her local theatre company where I am still a member. This support gave me many beneficial skills - and it was better than what I was offered at school.

Although my experiences from school were from a long time ago, it concerns me that similar events continue now.

Mainstream schools are challenging for autistic children and young people which leads to heightened anxiety; and this makes them vulnerable to social exclusion, mental health difficulties and low self-esteem. The National Autistic Society’s survey on autistic people in mainstream schools (published in 2021), more than 70% of autistic children and young people are educated in mainstream schools, with autism being the most common type of SEND for children with an education health and care plan (EHCP). However, many teachers have little confidence in their capacity to support autistic people; and according to the All-Party Parliamentary Group on Autism, 60% of teachers don’t have the training to teach autistic students in mainstream schools. 

With these shocking figures from the National Autistic Society, this shows how social stigma and lack of training have an effect on how reasonable adjustments can be supported - and this may lead to a crisis. If focused on, this may lead onto a path of reaching potential goals to give autistic children inclusion in education. 

I wrote a letter to Liberal Democrat Council Leader Cathy McArevey (dated 29th April 2025) to bring up my concerns on the lack of Special Educational Needs and Disabilities schools and school places in Hemel Hempstead during the May 2025 local elections. I brought this up to Ms. McArevey as I explained that I am interested to focus on school places. In the latest planning strategy report published by Hertfordshire County Council, the number of SEND places stands at 3,114 places across the county with a further 247 special school places promised by September 2026. 

I believe that schools are a challenging environment, but with SEND schools, I agree that the shortage of school places for SEND children and young people, including autistic students, needs to be addressed. Based on my own experiences, I wish that mainstream schools could make more effort to make reasonable adjustments. This could include smaller classes in Learning Support Departments, appropriate training for teachers and teaching assistants and having only one tutor. Plus, funding for training or having compulsory training for teachers, so they can be qualified in knowing about autism and how to help autistic children and young people in mainstream schools. 

Employment

Employment has been one of my main focuses as I feel that the employment of autistic adults needs to change. This needs to change in terms of how autistic adults can be included in a working environment whilst giving them the support they need.

After completing my education at Chickenshed Theatre Company (where I gained a bachelor arts degree in Inclusive Performing Arts), I struggled to find employment and it took me three years before I found work. I went to a lot of interviews and I was turned down. At one interview, I was told by a deputy head at a local SEND school that the school would never employ someone like me - because of my learning disabilities. 

Prior to the Coronavirus Pandemic, I gained employment in a youth centre in 2019 where I led workshops for young adults with all abilities. However, I didn’t receive the support I needed and I was treated less favorably and experienced harassment. I was even threatened of being let go for trying to speak to my employers about having support or making reasonable adjustments. This left me in tears every time I left work and after six months, I sent in my resignation. 

After the pandemic and lockdown, I joined a charity organisation called the Sunnyside Rural Trust. Sunnyside Rural Trust is a charity organisation and social enterprise for young people and adults with learning disabilities. With over 170 vulnerable people, young people and adults (who are referred to as trainees) are offered work experience to acquire skills in rural and retail activities like horticulture, animal care and outside contract work for other organisations including the Zoological Society of London and Dacorum Borough Council. 

I have been with Sunnyside for four years as of 2025, and through the organisation, I have gained experience and enjoy gardening because it makes me feel challenged! I have recently been employed by this organisation, working on their publicity team with the role Trainee Voice Lead. This means that I represent the trainees and participate in activities such as attending the Royal Horticultural Society flower shows and writing a blog for the trainees. 

I’ve also gained an extra role as a swimming teaching assistant for Everyone Active. I’ve worked at the centre for three years. At Hemel Hempstead leisure centre, we run Special Educational Needs swimming sessions for children between pre-school and stage 3. We are the only Everyone Active leisure centre in the country to have these classes. I assist in both SEN and mainstream swimming lessons, which has given me experience in working with the children and sharing my ideas with teachers on different swimming techniques to help them bring confidence in the water. I have also led my own 1:1 sessions with children who have aquaphobia. 

Many autistic adults have struggled to find paid employment or remain in work due to the lack of reasonable adjustments, being unfairly treated and discrimination. 

In 2021, The Office for National Statistics (ONS] published a report which regarding disabled adults included the following: 

 75% per cent of adults live with their parents, compared with only 16% of disabled people who are in supported living, social living or independent living

 Only 22% per cent of affected adults are in any kind of employment, compared to over 80% of non-disabled people

In addition to employment, the Buckland Review of Autism Employment [published by the Department for Work and Pensions in February 2024] included these following figures: 

I particularly also want to focus on including non-verbal autistic adults for seeking employment too. At Sunnyside Rural Trust, we have trainees who are non-verbal as well as verbal. However with the role of trainee (which means a person who is training to seek employment), I feel that an autistic adult who is a trainee from any organisation will struggle to find paid employment. I feel that there is a lack of support for job coaching or receiving support from a council or a social worker. If more job coaching or having an organisation with members who are trained to assist autistic adults was available, then it would increase the chances of more autistic adults of finding work. The same can be said for originations who hire autistic adults by making reasonable adjustments including having a 1:1 helper or having a structured route to make autistic adults feel relaxed and included.

Supported Living & Housing

Housing is another recent issue I am focusing on as I’m currently struggling to find a place to live independently. 

In 2024, after applying for independent living on the Dacorum Council Housing list, I was taken off the council housing list by Hertfordshire County Council without agreement or notice. When we asked why, my parents and I were told that, because of my learning disabilities, I wouldn’t have been able to manage a tenancy. We were advised to talk to my social worker to discuss supported living accommodation. With her support, we found a local property operated by an outsourced private company. When we approached them, the company promised me that with the three houses they purchased on the same street, I would qualify for moving into a house, sharing it with five women with moderate needs. However, after the application process, my parents and I discovered that if I moved in, there were rules as follows:

I also discovered that the company had not been entirely honest with me, my parents and the council when I discovered that one of the residents that I’d be sharing with was an older man with complex needs. The two women who were there on my introductory visit both had severe needs and with two carers each. I would not have felt secure in this environment. We rejected this option.

I am continuing to seek accommodation and would like to find somewhere that allows me to live independently, but I have to keep asking my social worker if this process is being moved forward. We have spoken about what I need if I live in a flat or a house by myself. Because of my epilepsy, I have been advised to rent or buy a 2-bedroom accommodation and to have a carer if I live on my own. I am concerned on what would happen if I continue to wait a long time for a house and what my future would be if I continued living at home with my parents - if one of my parents is ill or if they passed away. 

Since I have no experience on how to pay rent without support, I worry that if I have no support for independent living, I fear that I might live in an unsuitable setting which could impact on my physical and mental health.

In other autistic adults’ perspectives, I’ve heard that private companies who are supposed to support and protect vulnerable people in supported living are taking advantage of individuals and their families/carers, for instance by taking control of their finances.

Under the Care Act of 2014:

 Accommodation to be “provided to all people who appear to need care and support, regardless of their finances or whether the local authority thinks their needs will be eligible

 Accommodation to meet adult’s needs focusing on the outcomes they want to achieve and how supported living can impact their wellbeing

 How assessments “must be carried with involvement from the adult and their carer or someone else they nominate”

Independence for supported, social and independent living is taken away by longer waiting lists, and little or no communication and I believe that more regular training and staff assessments need to be carried out to ensure that autistic individuals feel safe, and have trust with the staff who are responsible for supporting them.

I believe that autistic adults should have some assistance like learning how to look after a house, how to pay rent, and food bills and how to remember to complete tasks like taking medication. 

National Health Service & Mental Health Services

The National Health Service and Mental Health Services are another important topic to focus on, especially with mental health services. In hospitals particularly I felt my experiences with them were challenging because there is a lack of understanding of autism and training. I have family members who have worked in the National Health Service and although I got support and health advice from my mum, I felt that post Covid-19 lockdown, it was the only advice I would get. This includes the limited access of meeting my local GP and seeing a neurologist because of my epilepsy diagnosis. 

At Christmas 2015, I had a sudden seizure at home and I had to be admitted to hospital. After being admitted, I felt I was being neglected and the hospital staff didn’t ask if I needed reasonable adjustments. I was left in the A & E room where I felt overwhelmed by the bright lights and the noise. I felt dizzy and in pain as I injured myself whilst having the seizure. When I was transferred to the day ward, I spent nine hours on a bed with an IV drip in my arm. Despite it being necessary to be hydrated, I was in a lot pain. I was afraid to move my arm or turn over on my sides to avoid the bright lights in the ward. I had to spend the time laying still on my back and having my eyes closed. I couldn’t ask for the lights to be switched off and my parents had to ask on my behalf but the staff denied this request. 

We did turn off the lights, but a few seconds later, a nurse switched them back on and stated that they had to stay on. I was not offered eye protection and this was after having a grand mal seizure when I was ultra-sensitive to light and sound. I could not eat from the food trolley either due to my dietary requirements, being gluten and dairy free. No alternative was offered. As a result, my dad had to go to the hospital shop where the only gluten free food they sold for lunch was a packet of crisps and an apple with a bottle of water. 

I have found it hard to visit the GP following the Covid-19 pandemic. Because of the continuing adjustments to having appointments on the telephone instead of face-to-face (which were introduced to encourage social distancing) and having to wait two weeks for appointments, it is becoming difficult to gain access to medical care for me and for my Mum who attends my appointments as my carer and advocate. I worry about the having to attend medical appointments in the future if I lose my Mum. I am concerned about not receiving support if my parents pass away.

I am not alone in this, as this is one of the three main concerns within the autistic community. I recently attended an event with Hertfordshire County Council called The Big Health Get-Together where the council led the event to find autistic adults’ opinions on access to health care. While I was there, I saw concerns that autistic adults had including having limited access to have face-toface appointments with their local GP’s and needing help and support when a parent or carer dies. I think difficulty in accessing health care is becoming an increasingly common issue. Although adults are being listened too, many are concerned if there would be available support especially if a parent or carer passes away.

I hope that by sharing my experiences whilst sharing my opinions during your review of the Autism Act of 2009 that reasonable adjustments will be made to allow autistic children, young people and adults to receive the support and care they need. I wish everyone on the board luck for the meetings and I look forward to hear about the process of the review of the Act. 

12th May 2025

Autism Act Inquiry Call For Evidence

Section A:

Evidence about autistic people and what they need. In this section we are asking questions about what we know about autistic people in England and what they need from the Government. You may want to answer the questions in this section if you know about this topic from research you have done.

Question 2

a) What evidence is there about what autistic people need from the Government and public services and the most important policy issues for autistic people and their families/carers?

Autistic people need better access to services, such as support in education, health care, social care, employment and financial support including the protection of benefits like PIP (Personal Independence Payment) and DLA (Disability Living Allowance).

Since the passing of the Autism Act of 2009, little has changed and the campaign for improvement is growing. Charities have been endlessly campaigning for autistic children, young people and adults to have access to the right support and to have a better public understanding of autism. One such charity is the National Autistic Society (NAS). In 2019, the NAS have published a report called ‘AutismAct:Ten YearsOn’. In the overview of the report, it stated that more than 2 in 3 autistic adults weren’t getting the support they needed to do everyday things like shopping, cooking, and preparing meals or managing their money. [Source: ‘NotEnoughandtheAutism Act’published 2022; https://www.autism.org.uk/what-we-do/campaign/not-enough]

Whilst the Government promised to update the Autism Strategy in 2019, there have been long delays to review and overhaul the act due to general elections and the coronavirus pandemic. As at 2025, fifteen years after the implementation of the Autism Act Of 2009, not much has changed - and what’s worse is that some of the support currently received by autistic children, young people and adults is planned to be reduced. One example being the plans to cut PIP benefits, which was an announcement chancellor Rachel Reeves made in March 2025. Although this is part of the Spring Budget, some members of Parliament have argued that implementing over £5 billion cuts to disability benefits would lead to uncertainty.

This affects the autistic community as follows:

    Autistic adults who are struggling to find work or who are in work under 16 hours a week

    One in five households with disabled people (including individuals who are autistic) would end up worse off by an average of £1,720 (Figures from Mel Merritt, NAS’s Head of Policy and Campaigns [Source: ‘What the Government's Welfare Proposals Mean and Why We’re Against Them, published 4th April 2025; https://www.autism.org.uk/what-we-do/news/welfareproposals-whatdothey mean]

    250,000 people and 5,000 children in the UK - including 700,000 autistic children, young people and adults - will be pushed into poverty by 2030 [from the report ‘What the Government's Welfare Proposals Mean and Why We’re Against Them, published 4th April 2025;

https://www.autism.org.uk/what-we-do/news/welfareproposals-whatdotheymean and ‘WhatIs

Autism’; https://www.autism.org.uk/advice-and-guidance/what-is-autism#:~:text= autism%20a%20disability%3F-,How%20many%20autistic%20people%20are%2

0there%3F,and%20children%20in%20the%20UK.]

This is a crisis not only for the autistic community but a crisis for the United Kingdom. Probably, the worst the country may see. However, if there is a solution, I feel the Government needs to heavily focus on the benefit and welfare for the 700,000 autistic children, young people and adults by working alongside charities and having public discussions like this inquiry into the Autism Act.

b) How is this changing over time?

Honestly, change is a slow process. If signs of change show, then my perception is that the situation is getting worse instead of getting better. However, I feel that inquiries like this inquiry into the Autism Act is a start. I hope that by the beginning of 2026, things will begin to improve especially in employment and in health, and social care.

Section B:

The Autism Act 2009, the Government’s autism strategy and the statutory guidance In this section we are asking questions about the Autism Act 2009, the Government’s autism strategy and the statutory guidance. You may want to answer the questions in this section if you know about this topic from your work, your own experience or research you have done.

Question 4

a) In what ways have the Autism Act 2009 and successive Government autism strategies been successful or unsuccessful in improving support for autistic people?

Since the legislation of the Autism Act, it seems clear that the government’s strategies have been unsuccessful, particularly in the areas of employment and education.

As of 2025, 7 in 10 autistic adults are unable to access in any kind of employment

[Source: ‘The Buckland Review of Autism Employment: Report and

Recommendations’,              published              28th              February

2024; https://www.gov.uk/government/publications/the-buckland-review-of-autism-e mployment-report-and-recommendations/the-buckland-review-of-autism-employment -report-and-recommendations], whilst the number of autistic children and young people, classed as ‘severely absent pupils’ from school has doubled since 2019. According to the charity Ambitious About Autism, 63,348 (31%) of children and young people with a diagnosis of autism are absent from school in England [Source from ‘AutisticChildrenandYoungCarersAreMissingOutonTooMuchSchool’, published 24th March

2025; https://www.learningdisabilitytoday.co.uk/news/autistic-children-and-young-ca rers-are-missing-out-on-too-much-school/#:~:text=Ambitious%20about%20Autism% 2C%20who%20analysed,19%20the%20rate%20was%2018%25.].

Given these figures in education and employment, it is clear that more must be done to improve the mental wellbeing and provide the right support for autistic children, young people, adults, their advocates and their families. For too long, there has been criticism of children and young people who are failing to attend school, and adults for not finding or staying in employment. There needs to be further understanding and support for individuals, which I will explain in further detail in Question 4, Section B.

b) What are the reasons for this?

Whilst there are many reasons for the failures in education and employment, the main reason for these high figures is that individuals and their advocates do not receive targeted support.

As of 2025, with the results published in an education report in 2021 [Source: The National Autistic Society’s Education Report, published in 2021], the Department for Education show that 166,041 (more than 70%) autistic children and young people are in mainstream education. However, 31% of children of school age are absent from school, the reasons can include anxiety (especially following the Coronavirus pandemic when lockdown has disrupted routines, and the frequent changes from home to back into the classroom), bullying, sudden transition from primary to secondary and feeling overwhelmed in large and noisy environments. Being absent from school or feeling overwhelmed at school has a huge mental impact on children and young people. Not receiving enough support during preparations for exams like GCSEs can also have an impact, especially whilst waiting for Education, Health and Care Plans (EHCP). Now, with the fears of children and young people losing legal entitlement to extra support, with the system being called ‘financially unsustainable’ [Source: the National Audit Office report ‘ThePerformanceofTheDepartmentfor

Education              2013-14’,              published              December

2014; https://www.nao.org.uk/wp-content/uploads/2014/12/The-Performance-of-theDepartment-for-Education-2013-14.pdf], families are concerned that if EHCPs are lost, children and young people will lose the support that is required in mainstream schools including one-to-one assistance, speech and language therapy and specialist equipment since schools currently have a legal duty to meet specific needs.

For employment, there have been low figures of autistic adults entering employment. With 7 in 10 autistic adults unable to access in any kind of employment, many signs point to lack of understanding of the support verbal autistic adults need to achieve their full potential. When it comes to non-verbal autistic adults, there are further barriers due to issues like communication challenges and having difficulties for advocating needs.

There might be non-verbal autistic adults who may wish to be in employment with the assistance or support of having one or more carers. There are some who participate in enterprises which provide support to build confidence for employment, but because of inadequate adjustments, employers fear that non-verbal adults are unlikely to receive support in work should they find employment.

For verbal autistic adults, there are many reasons why employment is hard to find or maintain which includes not receiving reasonable adjustments, discrimination and communication aspects in the workplace.

I feel that there needs to be a huge amount of change for many adults including more understanding, and perhaps training of other employees to ensure that a working environment is inclusive and able to provide reasonable adjustments for autistic employees.

Section C: The Government’s priorities in this section we are asking questions about the priority areas in the Government’s autism strategy for 2021 to 2026 and what the Government should prioritise in its next strategy. You may want to answer the questions in this section if you know about any of these topics from your own experience, your work or research you have done.

Overview Question 8 In this question we are asking about what the Government should prioritise to improve autistic people’s lives.

The autism strategy for 2021 to 2026 says that the Government plans to take action to improve autistic people’s lives across six priority areas: improving understanding and acceptance of autism within society; improving autistic people’s access to education, and supporting transitions into adulthood; supporting more autistic people into employment, tackling health and care inequalities for autistic people; building the right support in the community and supporting people in inpatient care; improving support within the criminal and youth justice systems.

a)                   Do you think that they are the right priority areas? Why or why not?

While the Government’s plans for the Autism Strategy have been promised many times [see Section A, Question 2] to make changes since 2019, I feel that whilst they are the right priority areas, the delays to make these changes happen are likely to continue beyond 2026.

However, the six priority areas are the right ones, especially in education, employment, and health and social care. How to structure the response to them is a different matter that requires careful consideration. Maybe listening to charities could be a start followed by listening to those affected by the problems and barriers that still exist. I feel this would be the highest priority first before focusing on the six priority areas themselves.

b)                  Is there anything else that the Government should prioritise to improve autistic people’s lives?

I feel supported living services should be included in the priority areas too. This should be a separate priority on its own, especially considering there have been many challenges in getting into or receiving the right support for supported living. In 2024, the Ministry of Housing, Communities and Local Government and the Department for Work and Pensions confirmed that out of the 634,000 support living units in the UK, only 40% of the population cannot access supported living accommodation.

By 2040, the demand for supported living will double and there will be a rising demand for accommodation from multiple vulnerable groups including autistic adults. [All figures are from the source ‘ResearchandAnalysis:SupportedHousingReview 2023’, published 4th November 2024].

However, the alarming issues that need to be focused on when it comes to supported living for autistic adults is that for critical housing needs and for their safety (as autistic individuals are under the vulnerable category by law), autistic adults need to have the following:

    The right to live in a safe environment with no criminal or public nuisance situations

    Staff members to focus on needs and to see if an individual needs appropriate reasonable adjustments

    1:1 support in cooking, cleaning and washing where it is required

    Not locating a supported living area in an unsuitable environment including an area where there is history of criminal activity and not near pubs

    Security inside such as locks or CCTV cameras

    Involving advocates or family members without rushing transitions into supported living from living at home

    Having the right for an autistic adult to see family and friends without making appointments

    Avoiding sudden transitions in the moving process like moving to a different location within days or weeks of moving into the original location of a previous supported living accommodation

I have been in a situation with a supported living organisation where there were red flags (which includes some of the points I mentioned) and many of my autistic friends have also faced these similar problems.

This is an issue that hasn’t made progress and there are some occasions where emergency services like the police become involved. I would like to see these changes to ensure the safety of autistic adults, making the six priorities into seven.

Public understanding and acceptance In these questions we are asking about public understanding, acceptance and inclusion of autistic people. Your answers could focus on specific parts of this. For example, when we ask about community inclusion for autistic people, you could focus on access to businesses, public sector services, transport, culture or sport.

Question 9

a) What are the main problems with public understanding and acceptance of autistic people?

The first main problem with public understanding and acceptance of autistic people is stigma. Stigma in any given environment can lead to ignorance, prejudice and discrimination. Lack of understanding and acceptance can have an effect on mental health (and isolation) and in turn, it can cause distress for advocates, parents, carers and guardians.

Also, the second main problem is difficulties with social interaction. Challenges in social interaction include misunderstandings in social cues, struggling to maintain conversations, difficulty informing and maintaining relationships and sensory overloading. If social interaction is challenged, this can result in social isolation and camouflaging (or masking). This can be extra difficult for autistic people who are non-verbal.

Stigma and difficulties in social interaction are reflected in reports like the National

Library of Medicine [UnderstandingStigmainAutism:ANarrativeReviewand TheoreticalModel,published in March 2022] where it mentions that 15.4% of 149 autistic adults have reported moderate to severe feelings of stigma; and by charities who have begun new public awareness campaigns. In one example, the National Autistic Society’s campaign ‘It’sHowYouShowUp’received 8,238 responses when the charity set up a survey to determine the problems with public understanding about autism. As a result, the survey produced findings for public assumptions including:

    1 in 4 autistic people receive a negative reaction when mentioning they are autistic to a member of the public

    Almost all autistic people and those supporting autistic people reported negative assumptions being made by members of the public, describing autistic people as anti-social, rude, weird and strange

    This can have an impact on daily lives in education, employment and in leisure activities

b) What is going well?

Some leisure centres have included sessions specially for autistic young adults and people either publicity or through private organisations like the Special Olympics. This includes having small group sessions in the gym with a personal trainer, quiet hour for swimming and having small groups for badminton sessions.

County councils have also introduced boards to help make sure that services are designed in a way that will meet the needs of autistic people. For example, Hertfordshire County Council have set up the Learning Disability Co-Production Board, where a group of people with learning disabilities (like autism) become board members to share experiences and ideas to improve services within the county, e.g., healthcare and social housing.

County councils have also introduced committees where autistic young people and adults get to share their own experiences and concerns on receiving support in general areas like healthcare and wellbeing.

In theatres, there are relaxed performances, which are designed to suit audience members with a variety of needs including autism. Relaxed performances run during matinee times and are hosted for once a year for one show. In each performance, reasonable adjustments are made including:

    Removing strobe lighting and leaving the brightness of the house lights low

    Reducing or removing loud noises or explosions

    Having additional staff members on hand to assist audience members (and they are given training prior to the event)

    Having separate areas for quiet time before or during a performance

    Visual stories with detailed information photos of the theatre and the show

    Access to ear defenders (but only available on request at the Ticket Office)

While theatres have been hosting relaxed performances in England since between 2006 and 2012, they are only run in bigger venues; this can cause difficulty for individuals and their families/careers to travel to some without access to public transport. In addition, the performances are usually run during school holidays and weekends. This needs further improving (further details will be under Section C below).

c) How can public understanding and acceptance of autistic people be improved?

Public understanding and acceptance of autistic people can be improved in a variety of ways, beginning with small changes in social environments and being open-minded about autism and to understand how situations like dealing with change can lead to anxiety.

To improve this, it would be beneficial to have accessibility for members of staff in most or all organisations to be trained either through online courses that could be provided to employees by the organisation (e.g., online training through Everyone Active and accessing to online training on the Absorb LMS Software website).

More leisure centres, shops, cafes and theatres that have given their staff extra training for Understanding Autism should be allowed to have access to decals from the Hidden Disabilities Sunflower organsation and be allowed to sign up for the Disability Confident Employer Scheme, set by the Department of Work and

Pensions.

Leisure centres, especially with the gym and aquatic activities, should be entitled to obtain funding for swimming teaching assistants, weekly separate sessions, and SEND classes (including ones for more non-verbal children and young people, and more local clubs); and more relaxed sessions in the gym in small groups; and with reasonable adjustments (including lowering brightness of lights and turning off loud music) and a personal trainer who is fully trained to teach or assist autistic people.

For relaxed performances in theatres, if there’s funding for this, another improvement could be to increase the number of relaxed performance events to a few days a year instead of one day a year; and to expand relaxed performances in smaller community theatres with training for volunteers and staff who work in them.

In addition, places of worship should also be considered. In Cathedrals and churches, there should be relaxed liturgies where autistic children, young people and adults are included in half-an-hour services with reasonable adjustments similar to relaxed performances in theatres. This can happen in early Sunday or weekday mornings or early evenings (e.g., either for Holy Communion, Evensong or introduce musical services with use of musical instruments for dancing).

For Cathedrals especially, it would be beneficial to have additional staff members, volunteers or vergers on hand to assist autistic members and their families (to be given training prior to the services).

Question 10

a) What are the main problems with community inclusion for autistic people?

Along with the previous information mentioned in Question 9, I feel that in addition to stigma, the main problems with community inclusion for autistic people, are a lack of social communication and maintaining relationships (whether they are family, friends or partners).

Community inclusion is an essential ingredient to improving mental health, enhance social cohesion (like building strong relationships), increase self-esteem and confidence. Without it, there are chances that autistic children, young people and adults will feel isolated, bullied or excluded and this will increase their difficulties in social interaction and communication.

If feeling excluded from community inclusion in their early years, autistic people will feel isolated and this is likely to affect them in later adulthood.

However, if autistic people are encouraged to join social clubs, support groups or have volunteering/career opportunities, autistic people won’t feel isolated and their confidence will grow.

a) What is going well?

There have been social enterprises who have been dedicated to improve the lives of autistic individuals, particularity for young people and adults. This is done by focusing on commercial activities and social impact which gives autistic people more confidence and to gain experience before having an opportunity to search for paid employment. The aim is to find strengths rather than focus on individual weaknesses.

One example in Hertfordshire, the Sunnyside Rural Trust offer training and work experience for over 170 young people and adults to acquire skills in rural activities. This includes gardening, animal care and garden maintenance. I was also given opportunities with support from the CEO, the staff and the publicity team. This includes receiving a paid job in their publicity team, attending events, and giving talks as a representative. This includes a recent event at a zoo where I had to talk to families about how to look after animals.

By having these opportunities, I feel that this has increased my confidence and I now have developed new life skills - which may come in handy for future employment if I was to change jobs.

So far, I feel social enterprises have put more effort into community inclusion. This is due to having staff with experience or who have been trained in supporting autistic individuals. I wish to see more social groups, clubs and other organisations do the same.

b) How can community inclusion for autistic people be improved?

I feel that more training should be introduced to clubs, social groups and social enterprises. People who are working with autistic children, young people and adults need to have more training instead of just taking a DBS check. Maybe training could be something practical; this could include an induction day for people to see what it’s like working alongside autistic people - whether they have had previous experience working with autistic individuals or not.

Maybe including EasyRead or visual booklets for autistic individuals to read at a social enterprise/a club or keep copies to take home. This can include what’s it like during a session or information about access information (e.g., where and if there is a quiet space or a structure plan on an activity that is happening).

Healthcare In these questions we are asking about identification, diagnosis and support for autistic people. Your answers could focus on specific parts of this. For example, you could focus on accessing post-diagnostic support as an adult.

Question 13

In this question we are asking about access to healthcare for autistic people. Your answer could focus on specific parts of this. For example, you could focus on going to see the GP, going to the dentist or accessing mental health services.

a) What are the main problems for autistic people in accessing healthcare?

The main problems for access to healthcare are the restrictions that were imposed during the Coronavirus pandemic. With the continuation of the set of adjustments of social distancing, limited access to having general practice appointments face-to-face, waiting for a fortnight for appointments, and to have them on the telephone can cause anxiety and confusion for autistic children, young people and adults.

Being in unfamiliar environments like different hospitals and pharmacies to receive vaccinations can cause sensory overloads and make an autistic person feel unsettled.

If an advocate like a parent or career passes away, autistic people worry about not receiving the available support in healthcare should they need to attend appointments on their own. This is a main problem, especially if there is no family member or friend who is able to attend an appointment with them.

Another problem is extra support should an autistic person made a decision or to be advised to have further examinations without an advocate present. This includes having X-rays or ultrasounds. Information or having instructions from doctors, nurses or specialists can be overwhelming for autistic patients if they aren’t accompanied with their advocate. Anxiety, I feel, may increase over time if there is no advocate present.

b) What is going well?

County councils have responded to the situation through a series of committees where autistic people are allowed to give feedback on their concerns and what they believe how access to healthcare can be improved. This feedback is then taken to further meetings including committee boards run by autistic or learning-disabled board members.

Some general practices are welcoming sensory toys and dark glasses to block out bright lights in the waiting rooms. There is also a room to use as a quiet space should an autistic patient need to find a place to sit whilst waiting for an appointment.

Doctors and nurses in general practices have been more understanding and kind towards patients. I am not aware of them having disability training beforehand but in my general practice, when I mention the word autism, they don’t discriminate, speak fast or use complex words without explaining what they are after that. They speak slow, comfort patients when are they worried and try to make an environment relaxed and positive.

I was also given an EasyRead diary plan following a learning disability check up appointment. This plan was to help me record a health plan (like changing diets and taking regular exercise) and to record my daily activities for 12 months until my next appointment.

Breast care clinics are making improvements too. I recently attended an appointment when I noticed a lump, and during the time, I saw the entire environment was relaxed and the doctors and nurses were friendly, allowed me to feel settled in a relaxed environment, asked short questions like if I was in pain, made sure there was no bright lights on while I was having an ultrasound and they spoke slowly when explaining what was found in the sonogram. They also gave my advocate support and explained a suggested plan for future breast care appointments and BRCA genetic testing.

c) How can access to healthcare for autistic people be improved?

Healthcare              can              be              improved              by              shorter              waiting              times              for              general              practice appointments, and having them face-to-face instead of on the telephone.

I also think that having availability for EasyRead information leaflets in clinics and/or online would be beneficial.

Employment: In these questions we are asking about supporting more autistic people into employment. Your answers could focus on specific parts of this. For example, you could focus on accessing an internship or apprenticeship, accessing supported employment or accessing reasonable adjustments at work.

Question 19

a) What are the main problems for autistic people in both finding and staying in work?

There are huge issues when it comes to finding and staying in work. I feel this area needs focusing on the most.

There is either no support or no right support to find work that would meet an individual’s needs. This is really frustrating. There are many reasons for this, but I will give a few examples.

When it comes to finding employment, the average time for an autistic young person or adult to find employment is five years. Sometimes, it can be more than five years. During that time, autistic individuals have to take the mainstream path like searching for work online or going to places like the JobCentre. This can affect their wellbeing.

According to the Buckland Review of Autism Employment [published by the Department for Work and Pensions in February 2024], the following figures that were highlighted were:

    3 in 10 autistic adults are in employment, compared to 5 in 10 for all disabled people and 8 in 10 for non-disabled people

    Autistic people face the largest pay gap of all disability group

    Autistic graduates are twice as likely to be unemployed after 15 months as non-disabled graduates with 36% continuing to seek employment

    Autistic graduates are most likely to be overqualified for a job they have while most likely be on zero-hour contracts instead of being in a permanent role

If they are employed and if there are problems within the work place, the length of staying in a job is between two days to four years. Reasons for this can include discrimination, being threatened and harassment. Or - in most cases - there isn’t enough training to support autistic people. According to the National Autistic Society’s report The Autism Employment Gap (which was part of their Too Much Information Campaign, published in 2016) responses to the charity’s survey indicated that from employers:

    60% of employers would worry about getting support for an autistic employee wrong

    60% did not know where to go for support or advice about employing an autistic person

In 2016, the Government made a welcome pledge to halve the disability employment gap by 2020. Nearly ten years later, the proportion of autistic adults in employment has increased from 16% to 30%. However, support is limited and the issue of lack of support in employment needs to be addressed.

Reasonable adjustments haven’t been met in most work spaces. This includes lack of 1:1 assistance, note takers and support with difficult paperwork. This causes exclusion and the lack of these adjustments will result in an impact on mental wellbeing, a lack in confidence and feeling pressured.

Another drawback is feeling pressured to stay in a job. Autistic young people and adults who are struggling to stay in a job have been told that they don’t need to leave and just have to carry on. This is largely due to needs for financial necessities, especially since by law, autistic employees need to work under 16 to 18 hours a week if they are to remain on Employment Support Allowance (ESA). Feeling pressure to stay in an unsuitable job is never an option and autistic young people and adults will need additional support when considering changing jobs.

b) What is going well?

What is going well is how colleagues are understanding more about autism. In my paid job as a swimming teaching assistant at Everyone Active, I’ve been given opportunities to assist mainstream and SEND swimming lessons.

I assist in three different classes and have worked with children either 1:1 or in small groups. I’ve been given encouragement to lead lessons on occasions. While there is only one trained person who has worked with SEND children, teachers have asked for my assistance on occasion, based on my own experiences as an autistic individual. This is then passed on to encourage children to swim, especially since more autistic children are joining mainstream swimming lessons.

In my experience leading a 1:1 session is good as focusing on one person helps my mental wellbeing. However, if there is a big group that I have to lead by myself, it can be overwhelming. My colleagues do understand my needs and having their independent support increases my confidence and gives me a reason to continue to work at my local leisure centre.

c) How can support for autistic people to find and stay in work be improved?

In my opinion, I think support for autistic young people and adults can be improved by encouraging them to participate in work experiences in higher secondary, in tertiary education or whilst seeking employment like volunteering - I had opportunities to volunteer in multiple organisations while I was searching for a job. Volunteering increases mental wellbeing and social confidence.

Also, I feel that organisations should employ someone who has been trained or who has experience working alongside autistic individuals. This is why, it would be useful to have extra support in improving grammar, understanding complicated words/sentences in paperwork and explaining what will happen next during the day.

28th May 2025