Supporting autistic people, parents and carers to drive meaningful change

01 December 2025

We all want to improve life for autistic people

Like so many of you, we want to see better support for autistic people across their entire lives. Imagine a world where schools recognise autistic children right away and provide the support they need to meet their full potential. Imagine a time when health and social care services are fully accessible to autistic people, not expecting them to enter chaotic, bright, noisy waiting areas or discharging them because they can’t speak on the phone or because they missed an appointment.

If, like us, you dare to dream of better, we want to help you create the change you want to see.

We’ll need to work together to make that happen

We’re busy planning our work to help autistic people, as well as parents and carers, to get more involved in Government decisions about the big issues affecting their lives – to say what needs to change, let the world know about it, and to have more of a say in those decisions.

Our leadership team has a mixture of lived experience – like many of you, we recognise our own autistic traits. One of us is currently going through a late identification journey and two are parents to formally-diagnosed autistic children. Together, we have over 25 years of experience working in autism-related settings, including in senior roles, leading campaigns, delivering clinical psychology services, and whistleblowing where standards just weren’t high enough.

What do we mean by the ‘autism community’?

We use the term ‘autism community’ to describe all of the people we work with who have an interest in – or connection to – autism. This includes autistic people, with and without a diagnosis, as well as parents, carers and other supporters. It also includes autistic and non-autistic people who work or volunteer in the area of autism, for example in health or social care roles, and researchers.

When we use it in this way, the word ‘community’ simply refers to a group of people with a shared interest. We are not using the word to imply a joined-up community or a ‘sense’ of community – we know that some people do feel they are part of a community like that but others don’t.

With all that experience, both lived experience and professional, we’re passionate about change and we know nobody can drive that change alone. It’s a huge task to change Government policy, improve practices around autism assessment, NHS services, education, social care, criminal justice and so much more. We want to support the community – meaning all autistic people and those who support them – to be more involved in speaking up and demanding better.

What’s the role of Autism Action?

We want to see a stronger, more united community of autistic people and supporters, working together to drive change. It’s hard to stand up and be counted, we know that. Some people have been working tirelessly for years and are in danger of burnout. Some have demanding jobs that are difficult to maintain, and/or caring responsibilities or additional disabilities, all of which makes it difficult to find time and energy to do any more than we do already. We want to help with that, offering support to overcome the barriers.

As a starting point, we’re exploring how many people are interested in getting involved, what they’re doing already, and what barriers they’ve come up against. Our neurodiverse team created and ran a survey with our Community Advisory Panel as a first step. Around 150 people responded, and we’ll describe the results below.

Many of you are keen to be part of driving change. Why is that?

The vast majority of people indicated that big changes to society are needed, and that Government needs to make changes, with 90% saying they’d like to be part of driving those changes.

Many people indicated that they wanted to be part of driving change because of just how bad things have been for themselves or their loved ones – they don’t want anybody else to go through the same experiences. We can’t say this any better than people said it themselves:

“I’ve had my diagnosis for almost 20 years and NOTHING has improved or changed. […] Enough talk, we need action now not later.”

“Because I care passionately about a handful of things in life, and advocating for autistic people like myself is one of those things.”

“I have experienced desperate need for support which is usually only needed by people who can’t explain why, but being very articulate means I can explain it. I BADLY want to be part of the change”

“I am fortunate to have a voice, and to live in a time and place where I can contribute. Not everybody has that privilege, so I feel responsible for playing my part when I have the opportunity.”

“I want to help improve life for fellow autistic people, I want to make a positive impact, I want to help make good change happen”

“It’s a shame, it doesn’t need to be this way, if society is encouraged to work as a team.”

“Because autistic people have so much to contribute and it’s being wasted”

“So that I can use my voice to advocate for those less able to advocate for themselves.”

“I have for too long been left out of society, knowing my skills and abilities are worth something – but for too long people just see us as ‘disabled’ and leave us – to pretty much rot away.”

“Already deeply embedded in lived experience and advocacy work on many levels, I’m eager to harness the motivation and drive to really drive more widespread improvements for autistic people.”

“Lived experience means I have a greater understanding of the challenges, and proving people’s misconceptions wrong is vital to achieving change. I don’t want to passively wait for a miracle.”

“Because someone has to.”

What are people doing already?

The people who responded to our survey are clearly doing a lot already, as we might expect from a group that has joined the advisory panel for a charity. The most common activity was adding their name to petitions or letters to Government, followed by supporting organisations, getting involved in co-design or co-production, writing blogs and social media posts, and donating money to autism charities. Each of these was reported by over 60 people.

Nearly 40 people had other examples of getting involved in driving change, including engaging with their Member of Parliament or local council, writing books or print articles, delivering training, driving change in their workplace, and even making a film.

What are the barriers to getting more involved?

Over 90% of people indicated they’d like to do more but something – or multiple things – are stopping them.

In fact, only 6% of people said they don’t want to do more than they do already.

This is vitally important, as it suggests there is a vast group of people who want to do more to drive change for autistic people if only the barriers were removed. Removing those barriers is exactly where we want to come in.

‘Other’ barriers included:

‘it’s overwhelming’
‘I’m limited by autistic traits
health or disability’
‘I’m already exhausted
out of energy or burnt out’
‘I’m not comfortable with what’s being organised already’
‘I don’t think I could convince people’
‘I take too much on’
‘concerns about impact on benefits’
‘anxiety’
‘needing a platform’
and ‘feeling isolated’.

Are people interested in joining a group to learn about how people can come together, get organised, and drive the change they want to see?

Yes! Despite all the barriers, over half said they’d be interested in joining a group like this and nearly another 40% might be interested. In total, that’s over 90% who’d like to join if the various barriers can be overcome. There is clearly an appetite for this work, which is great news.

We also asked what would make people more or less likely to join a group like this and received a large number of suggestions that we will be able to make very practical use of. Note that some suggestions were conflicting, such as some people wanting face to face contact and other explicitly not wanting that. We will be mindful of this, offering flexibility and recognising that some groups will work for some people but not others, and vice versa.

Suggestions included:

accessibility, including timing
listens to everyone
clear information, rules, and processes
inclusive
autistic led
independent
positive
clear focus and objectives
recognition for work
well organised
making a difference
with like-minded peers
nonjudgmental
open to disagreement/conflicting ideas
flexible
funding for key training
good use of time
safeguarding
supported by academia
decisive leadership

smart targets
support for those involved
boundaries respected
inclusive of cooccurring conditions
asynchronous input/thinking time
high likelihood of success
reimbursed for time
small group
responsive to messages
includes specific subgroup (e.g. autistic women, specific age group)
includes diversity (e.g. race, gender, sexuality, disability)
informal
carers available for those with caring responsibilities
contact from a real person
not tokenistic
gives a sense of belonging
includes one to one discussion
driven by logic/rational

Community Priorities

We asked the almost impossible question, ‘If you could fix just one thing to make life better for autistic people, what would it be?’ We know that can be a really irritating type of question, but almost everybody was able to make a suggestion.

The ideas suggested most often were around knowledge, understanding and awareness of autism, sometimes described as ‘training’, across society and/or in specific groups such as health professionals.

The next most popular suggestions related to employment and then various types of support across different areas of life.

There were many other suggestions, for example accessibility of various settings or society more broadly, influencing Government, improving diagnosis and in particular earlier diagnosis, education and accommodating for sensory needs.

This is helpful to understand and will help us prioritise issues for our first steps, but most importantly it reminds us that the autism community has a range of priorities – there is not a single most important topic. The community will need to be supported to form multiple groups looking at different difficulties. Providing this support is a challenge we are keen to rise to.

Extra information: Who took part in the survey?

We know that not everybody wants to read a lot of text and this post is already quite long. However, we are committed to openness and transparency. We have included this extra section about the characteristics of people who took part, for those who want this amount of detail.

We are constantly striving to include more voices in our community engagement work and the first step is to know who is already engaging with us. We therefore always ask for demographic information – personal characteristics that help us monitor the diversity of people who respond.

This also helps us check how careful we need to be not to assume that our results can be generalised. For example, if we don’t have enough people from specific ethnic groups responding, we mustn’t assume that our results would generalise to that group.

We will continue to work hard to include the views of more people with learning disabilities, those who don’t use words to communicate, those who use AAC (Augmentative and Alternative Communication), people from a range of ethnic groups and people with minority gender identities.

Autistic people and supporters

Note: these categories overlap. For example, many autistic people are also parents and carers of other autistic people, and many work in the field of autism.

People with learning disabilties and people who use supported communication

Only 8% of people who responded said they have a learning disability. 13% of parents/carers said they support an autistic person with a learning disabilty and 4% said they support somebody who uses Augmentative or Alternative Communication or doesn’t use words to communicate.

Age

Gender

Note: ‘cis’ refers to current gender matching sex at birth and ‘trans’ refers to current gender different to sex at birth. Non-binary is counted separately.