Advocacy
About NDSA
We are a grassroots autistic people’s organisation where 75% of directors, employees, and volunteers are autistic. We support autistic adults (including those ineligible otherwise) to access social care.
We create and run practically helpful services that fill the gap in support such as our ‘Pathway peer mentoring’ programme, and ‘Tool Up mentoring into employment’ programme. Our programmes are developed based on consultations with 250+ autistic adults layered with research by autistic academics to ensure targeted support, and best practice.
Advocacy Priorities
Based on our latest consultation (2024 Survey Results), the top priorities to improve the lives of autistic people are:
- Mental health and wellbeing
- Changing attitudes towards autism in society
- Employment
These remain the top autistic people’s priorities followed by:
- Family and relationships
- Education
- Advocacy in health and social care/benefits
- Criminal justice
In relation to the services, autistic people ranked their needs as follows:
- Building Positive Autistic Identity
- Post diagnostic support
- Training professionals
- Access to the diagnosis
- Self-advocacy and advocacy
> Speak Out
Use your voice and speak out about the issues autistic people and their families face. You can do this by:
- Sharing links to our website on your social media platforms
- Holding a fundraising event and speaking to your audience about Autistic strengths, the benefits of neurodiversity, and the outdated stigma and discrimination.
- Telling your office about NDSA and choosing us as your charity of the year.

Our Programmes
For mental health, we advocate with the ICBs (NHS) on Autism Partnership Boards to make talking therapies accessible to autistic people, as we have found that some services exclude autistic people. We also run our Pathway mentoring programme that helps autistic people to achieve better understanding of their autism, gain confidence, improve wellbeing, and attain a positive autism identity which improves mental health.
We run a weekly online group to help autistic people to get together and support each other. Email toolup@ndsa.uk
With our Living Well with Autism, we are training first line professionals (Living Well with Autism training for front-line professionals). We educate on autistic needs and reasonable adjustments. This helps to make healthcare more accessible for autistic people and to transform attitudes towards autism in society. We offer autistic people a framework to rate the accessibility of their GP practice (auditing the accessibility of your GP practice) as a way to self-advocate for accessibility of healthcare.
We are also running the ToolUp mentoring into employment programme to help autistic people into employment, and the Neurodiversity at work training for employers which works on changing attitudes on autism and removing barriers for autistic employees in the workplace.
We are advocating for autism post-diagnostic support with the Derbyshire Autism Partnership Board and Community of Practice. We strive to gain funding to offer post diagnostic services (post-diagnostic support package in Derbyshire) to autistic people, including through Living Well with Autism training for individuals.
As part of our advocacy efforts, we join with other autistic-led organisations to campaign against ABA as part of transforming attitudes to autism in society. We are also campaigning to make healthcare more accessible to autistic people through the tool to audit your GP practice that is a way to self-advocate with the GPs. We are also promoting the use of the National Autistic Society’s Autism Hospital Passport.
We are working in partnership with Derbyshire Autism Services to work on family and relationships and with IPSEA, SOS!SEN, and First Look SEN on education advocacy.
We are developing self-advocacy materials for newly diagnosed autistic people and would like to test them with autistic people. We are looking for volunteers to drive this agenda. If you would like to lead this or just to test and give your feedback, please email toolup@ndsa.uk.
You could also refer to Cloverleaf Advocacy for your various advocacy needs.
We are also piloting the Phoenix programme for autistic people with convictions.
What we believe
A person is autistic if their neurotype is distinct from the majority, characterised by differences in social communication, sensory processing and attention. Autistic poople are a social minority that may be disabled by a socicty designed for neurotypical prople.
Neurodiversity means that every brain is unique, and there is no “normal” brain. Everyone has strengths and areas where they need support. The neurodiversity movement advocates for the acceptance and inclusion of people with brain-based differences such as autism, ADHD, Dyslexia, Dyspraxia, Tourette’s, learning disabilities, and mental health conditions. It opposes efforts to “cure” or eradicate autism, emphasising that autistic individuals should be allowed to exist and thrive with the necessary support and reasonable adjustments. NDSA supports these principles, promoting celebration and inclusion of autistic individuals.
“Nothing About Us Without Us” signifies the essential involvement of autistic individuals in all discussions about autism. When decisions are made without our input, the outcomes are often detrimental, failing to improve our lives. Inclusive decision-making ensures that policies are beneficial and promote understanding and support for the autistic community.
This page highlights NDSA’s perspectives on various autism-related topics. You can explore each topic in detail below.People are disabled, not always by their conditions but by systems, structures and attitudes in society. The Equality Act 2010 emphasises that people with specific protected characteristics, including autism, should be included and enabled to access their human rights. This may mean modifying environments, processes and structures.
Autism + Environment = Outcome (Luke Beardon)Autism is a developmental difference affecting the way autistic people learn, communicate, and perceive the world around them. This difference is disabling in society designed for neurotypical people. Disability is a natural part of human diversity, yet society often excludes disabled people by trying to cure them or make them “less disabled.” The disability rights movement, including NDSA, advocates for changes in society to accommodate disabilities and remove barriers instead of trying to change disabled people. The focus should be on ensuring that people with disabilities have access to the support and resources they need to thrive, rather than on attempting to fix or diminish their disabilities.
Self-advocacy involves taking charge of our lives by making personal choices and influencing society’s views and policies on disabilities, including the so-called “hidden” disabilities, such as autism. It includes deciding on personal activities and broader community actions.
Every disabled person can be a self-advocate, regardless of their level of disability. Simple actions, like saying “No,” are forms of self-advocacy. Everyone deserves the tools to advocate for themselves and make their own choices.Autistic individuals are the best experts on autism. We understand the challenges we face and often have practical solutions. Often non-autistic “autism experts” have created policies without lived-experience input, leading to ineffective and sometimes damaging outcomes. It is crucial for autistic people to be involved in policy-making to ensure our needs are met and our voices are heard. Our input must be authentic and robust. There should be no exceptions to our participation in any national or local dialogue about autism.
At NDSA, we avoid using labels like “high-functioning” and “low-functioning” to describe autistic individuals. These labels are unhelpful and oversimplify the diverse abilities and needs of autistic people. Everyone has strengths and areas where they need support. Functioning labels can prevent “high-functioning” individuals from getting the help they need and restrict “low-functioning” individuals’ autonomy. Instead, we focus on recognizing each person as an individual, acknowledging their unique skills and support needs to ensure they receive appropriate assistance.
Diagnosis is not a prerequisite for being part of the autistic community. Many autistic individuals, especially those from ethnic minorities, women and girls, trans and nonbinary people, and those seeking a diagnosis in adulthood, face barriers to obtaining an official diagnosis. The process can be costly and time-consuming, and some people may choose not, or are unable to seek an assessment. At NDSA, we welcome all autistic individuals, regardless of whether they have an official diagnosis.
Therapies like physiotherapy, speech therapy, occupational therapy, and augmentative and alternative communication (AAC) can be beneficial for autistic people. These therapies should be more accessible. However, some so-called therapies, or interventions, aim to make autistic people seem “less autistic”, with Applied Behavioural Analysis (ABA) being the most common.
ABA uses rewards and punishments to train autistic people to act non-autistic, which can be harmful, teaching compliance but failing to teach necessary life skills. ABA is a form of conversion therapy, perceived by many to be emotionally abusive and traumatic for autistic people. There is growing evidence* that it causes PTSS (Post-Traumatic Stress Syndrome). Autistic adults who were subjected to ABA as children campaign to ban it. Conversion therapies, such as gay conversion therapy has been banned in many countries around the world. NDSA advocates for therapies that support autistic people in achieving their own goals rather than conforming to non-autistic standards. Effective therapies focus on helping autistic individuals identify and achieve their personal goals. * https://bit.ly/4eQ4N1F and https://bit.ly/3XRGs5uThere are many fraudulent treatments claiming to cure autism, using methods like chelation, bleach, restrictive diets, and ineffective medications. These can cause real harm to autistic individuals and exploit families financially. NDSA strongly opposes these practices. Instead of focusing on impossible and unwanted cures, efforts should be directed towards providing the necessary support for autistic people to lead fulfilling lives.
Work offers validation, satisfaction, fulfilment, confidence, and social opportunities that are essential for all, including autistic individuals. The employment rate for autistic people is the lowest among all disability groups, standing at 26%, compared to 80% for non-disabled people and 50% for disabled people overall, according to the Office of National Statistics. Despite 77% of unemployed autistic individuals wanting to work and 58% seeking assistance to get into employment, they often do not receive the necessary support. Consequently, many end up in unsuitable jobs, with poor mental health and burnout. We advocate for employment support across all ability levels to help autistic individuals define and achieve their desired careers sustainably.
In the UK, autistic students have the right to appropriate education and support tailored to their needs. Schools are legally obligated to provide reasonable adjustments under the Equality Act 2010, ensuring that autistic pupils can access the curriculum and participate fully in school life. This includes individualized support plans, specialist teaching, and resources to aid learning and social development. Additionally, the Special Educational Needs and Disability (SEND) Code of Practice outlines the responsibilities of educational institutions to identify, assess, and meet the needs of autistic students, promoting an inclusive and supportive educational environment.
Attempting to access this support often proves to be a battle with families facing multiple hurdles often leading to SEND Tribunals. Too many autistic children are excluded from school with a fast-growing number developing emotionally based school refusal due to the barriers preventing them from learning and positive mental health. Current practices require a child to fail before appropriate provision is even considered. Autistic children should receive a diagnosis and appropriate support in good time, with schools and Local Authorities appropriately funded to deliver.Autistic individuals have historically been thought to be predominantly male and only children. Outdated stereotypes hinder recognition and support for autistic women and girls. They often receive late diagnoses or are misdiagnosed due to masking behaviours and differences in autistic traits. These traits, such as voracious book reading, or love of animals, rather than fascination with trains for example, might resemble typical behaviours in non-autistic women and girls, however, there are qualitative differences. Accurate diagnosis and support are crucial for autistic women and girls to gain a sense of self-identity, self-understanding, to build the necessary tools for self-care and access necessary resources.
Autistic people are over-represented among LGBTQ+ communities and our own survey of 330 autistic people shows that about a third identify as LGBTQ+. The competence of autistic people to recognise their own sexuality should not be challenged. Autistic people should have access to health services that enable them to live fully their gender identity.
Autistic people are under-diagnosed in Black, Asian, and minority ethnic (BAME) communities, making it harder for them to receive appropriate support. Understanding these experiences is crucial to creating a society that serves all autistic people. Decision-makers, service providers, and community groups should listen to BAME autistic individuals and their families to offer culturally appropriate support. The National Autistic Society has done some research in this community. Key issues identified include:
- Difficulty obtaining diagnoses due to lower autism awareness and misinterpretations of behaviour.
- Barriers to accessing services, including language barriers and professional jargon.
- Communication issues with professionals, including lack of cultural understanding.
- Limited community awareness and support, with some communities stigmatizing disability.
- Denial and isolation, with families sometimes hiding autism due to shame or privacy concerns.
NDSA is reaching out to other organisations working with BAME groups to build awareness and acceptance of autism.
Autistic individuals face significant health inequalities, with a high Autistic individuals face significant health inequalities, with a high prevalence of physical and mental health issues. Around 70% experience mental health problems, and there is a 66% high incidence of suicidal ideation and attempts (35%), particularly among those without intellectual disabilities, who have a 16-year shorter life expectancy with suicide being the leading cause of early death. Epilepsy is a leading cause of death for autistic individuals with intellectual disabilities who experience 30 years shorter life expectancy.
These health inequalities are largely due to minority stress and barriers in accessing healthcare, such as the need to make phone calls and inaccessible medical environments. NDSA trains professionals to make healthcare more accessible and autistic individuals to understand their rights and request adjustments through for example the use of Health Passports. We also provide a framework for auditing the accessibility of GP practices.We advocate to stop using this torturous ‘therapy’ on autistic people
ABA (Applied Behavioural Analysis) is an emotionally abusive compliance training, which can cause PTSD (post traumatic stress disorder) in autistic people subjected to it.
Many autistic adults who were subjected to ABA as children campaign to ban it.
ABA is a form of conversion therapy. Conversion therapies, such as gay conversion therapy have been banned in several countries around the world.
Sources: There are better ways to support your child or autistic person. Look at trusted therapies provided by the NHS. Talk to autistic-led groups supporting autistic people. Give your autistic person space and listen to them when they experience meltdown. PBS is a gentrified form of ABA that purports to not use aversive (punishment), but only to use rewards. Fundamentally it remains an emotionally abusive compliance training. As autistic people, we call for an end to the use of ABA/PBS.
Language We promote use of identity first non-pathologizing language e.g. ‘an autistic person’ and in referring to specific individuals follow individual preferences. The language used to describe a group of people directly influences society’s perception of them which, in turn, influences how a person feels about themselves. It is time to reject language rooted in deficit-based thinking.
Being autistic is a fundamental part of a person’s identity; separating autism from the personality is impossible. There is no version of an individual that exists “without autism.” As one autistic adult stated, “I don’t wish to be cured from being myself.” Therefore, the overwhelming majority of autistic people prefer being called ‘autistic’, not ‘with autism.’ This preference is known as using “identity-first” language.Language use in autism
The language used to describe a group of people directly influences society’s perception of them which, in turn, influences how a person feels about themselves. It is time to reject language rooted in deficit-based thinking.
Being autistic is a fundamental part of a person’s identity; separating autism from the personality is impossible. There is no version of an individual that exists “without autism.” As one autistic adult stated, “I don’t wish to be cured from being myself.” Therefore, the overwhelming majority of autistic people prefer being called autistic, not “with autism”. This preference is known as using “identity-first” language.
Person-first language, such as “person with autism”, implies that autism is a negative trait, akin to an illness that needs to be cured. It suggests that being autistic is something separate from the person’s identity. Furthermore, terms like “disorder,” “deficit,” or even “condition” can be seen as inaccurate and harmful, potentially affecting an individual’s self-worth. The need to specify that an autistic person is still a person underscores a stigma that should not exist. Instead, many autistic people prefer “identity-first” language, which respects autism as an integral part of who they are.
Autistic people have historically felt not being listened to. Using person first language is where it continues to happen.
Ableist pathologising language | Alternative |
---|---|
Healthy | Non-autistic |
Symptoms | Traits, behaviours |
Deficits | Differences, which also involve strengths |
Special interests | Passionate interests |
Challenging behaviour/problem behaviour | Distress behaviours |
Medicalized/deficit-based language | Description of traits |
High/low functioning | Describe specific strengths and needs, and their variability across settings |
‘At risk’ of autism | Higher likelihood |
Burden of/suffering from autism | Impact of needs not being met |
Co-morbid | Co-occurring |
Treatment | Support |
Ableist discourses are ways of discussing autism that reflect and/or contribute to dehumanization, oppression, or marginalization of autistic people. It is important to recognise and challenge them.
Ableist discourses | Alternative |
---|---|
Discussions about economic impacts of autism that situate costs in the existence of autistic people, or compare the costs to those of potentially fatal diseases/conditions such as cancer or stroke | Situating costs in society’s systemic failure to accommodate autistic people and that recognize the people most affected by oppression due to this failure are autistic people themselves (not “taxpayers” ) |
Interpretations of all group differences as evidence of autistic deficits | Autistic people have relative strengths over nonautistic people or that differences between groups are value-neutral unless specifically demonstrated otherwise |
Cure/recovery/“optimal outcome” rhetoric | Discussions focusing on quality-of-life outcomes that prioritize what autistic people want for themselves |
Prioritizing “passing” as nonautistic (e.g., some “social skills” training) at the expense of mental health and well-being. | Prioritizing mental health and well-being, which can include embracing autistic identities |
Autism as a puzzle | Autism as part of neurodiversity |
Autism as an epidemic | Autism as increasingly recognized/diagnosed |
Suffering from autism | Suffering from ableism and discrimination |
Autistic people being a burden | Ableist attitudes dehumanising autistic people |
How to Get Involved
We need your help to drive change. National change starts at the local level, and we’re organizing within Integrated Care Boards (NHS + Social Care) areas so you can advocate for change in your community. By supporting our programmes, you can attend our meetings, where we discuss our current and future initiatives. These meetings are your opportunity to influence and shape our plans.
Your involvement could extend to lobbying on multiple fronts within your area – including your local NHS, your MPs, and your councils. This creates a powerful and coordinated effort to apply pressure on decision-makers. Remember, councils have strong ties to their local NHS and are often overlooked in lobbying efforts.
Local campaigns are led by NDSA Change Makers, either individually or in teams. You can learn more about becoming a Change Maker through our programme. If you’re not ready for that but still want to contribute locally, you can register as a volunteer by emailing us.
You can also join our advisory group or a steering group for the self-advocacy project.
Email toolup@ndsa.uk
Completed Advocacy Work
- Submission to Autism Strategy consultation 2019: Download PDF
- Submission to the consultation on the harmful content online: Download PDF