Autism Awareness campaign survey
Surveying autistic perceptions and experiences of public awareness and understanding of autism
What we did
Autistic people routinely face societal judgement and discrimination due to a lack of public understanding or negative attitudes towards difference. Whilst society is slowly changing, and neurodiversity is becoming more understood, there is still a very long way to go towards widespread understanding and acceptance.
In April 2025 the National Autistic Society plan to launch a campaign to challenge current perceptions of autism and help create a more accepting society. To enable the campaign to be shaped by autistic people, we commissioned a survey of autistic people, and those who support autistic people, as an important first step in gathering their perspectives and insight.
How we did it
We designed a survey which collected data from autistic people or people providing support to an autistic person, living in the UK.
There was involvement of autistic staff members at all stages of development, including review from three members of the National Autistic Society’s Autistic Colleagues Network (ACN).
The survey was advertised via Social Media, emails and word of mouth and was available to complete from 3rd – 16th June 2024. The survey collected data relating to the following topics:
- public understanding of autism
- behaviour of the public
- finding support
- changing perceptions of autism
- public assumptions of autism
- impact of the public
Who completed the survey
8238 participants completed the survey
4231 were autistic and predominantly female (66%), aged 25-64 years, who felt they had minimal or no support needs:
- 62% diagnosed autistic;
- 19% self-identifying as autistic;
- 19% awaiting a diagnostic assessment;
4007 were people providing support to an autistic person who were mostly parents/carers (88%) predominantly supporting males, aged 16 or younger, who needed a lot of support with day to day tasks.
What the findings tell us
The survey data showed that autistic people and their families perceive there to be low public understanding of autism and that this has a negative impact on the lives and wellbeing of autistic people. There were few positive experiences reported and the findings were dominated by reports of negative experiences including:
- Poor public understanding of autistic behaviours and experiences;
- Negative assumptions made about autistic people and their behaviour;
- A lack of appropriate help given to autistic people when needed e.g. when visibly distressed;
- Experiences of taunting, mocking, and overt disapproval at distressed behaviours;
- Negative reactions to disclosure.
There was a discrepancy between what autistic people need from the public, and what they currently experience. The report highlighted that negative public attitudes and lack of understanding of autism can lead to:
- Poor mental health;
- Social isolation;
- Reduced access to education, employment or leisure activities;
- Reduced opportunities to develop friendships and relationships.
Support and understanding are beneficial for autistic peoples’ wellbeing but the survey suggests this is almost always provided by close family members and friends, rather than wider society. Participants felt the experiences and wellbeing of autistic people could be improved by increasing the public’s understanding of autism and dispelling some of the myths that currently exist.
Limitations to the findings
Although a large number of people completed the survey (8238 participants), as with all surveys, there are limitations to the conclusions that can be drawn from the findings and how far these can be generalised. These include:
- Key differences in the demographics of the autistic people in the two respondent groups (majority female with no/minimal support needs Vs majority male with high support needs). Any comparison of the two groups must take this into account;
- All data collected in the survey is self-reported and subjective – it reflects the participants’ perceptions of experiences and events, and their interpretation of the questions in the survey;
- The sample may not reflect the views of autistic people who are less-represented in research or surveys, such as those from minority ethnic groups or those who have minimal or no speech;
- In the autistic group many were not formally diagnosed (38%);
- Participants were a self-selecting sample – they may represent a specific (and potentially biased) sample which could limit the generalisability of results across a wider autistic population.
Conclusion
Despite some shortfalls outlined above, these survey findings are significant in capturing a large number of people’s experiences. They demonstrate a poor public understanding of autism and the significant and far-reaching negative impact this has for autistic people and the people who support them.
The data tells us that there is a great deal to be done to deepen public understanding and knowledge to create a society that works for autistic people. Simple things can make the biggest difference to autistic people, for example to be:
- Accepted as an autistic person without judgement or assumptions;
- Able to feel safe;
- Given the opportunity to reduce loneliness and social isolation;
- Offered help to access a quiet space when distressed;
- Treated with kindness and understanding.
