Autistica is one of the UK’s leading autism research-based charities. Based on priorities identified by autistic people they have identified six goals they want to achieve by 2030. Their goals aim to increase the quality of life for autistic people, enabling them to live healthier, happier and longer lives. Autistica aims to achieve these by funding research to identify what works. Then they will advise and influence key partners to implement these solutions to improve the lives of autistic people.
The 6 goals identified they hope to see achieved by 2030 are:
By 2030 autistic people will have support from day one. Some autistic people can find it difficult to get a diagnosis, and following this, many individuals feel that they do not have the support they need. Their aim is to make specialist support accessible for autistic people and their families from day one to ensure that they receive the help they need when they need it. People will be empowered to learn more about their diagnosis and have access to the tools they need to lead a healthier life
By 2030 employment rate will double. Autistica have identified that while many autistic people are willing and able to work, inaccessible recruitment processes can make this more challenging. By 2030 they want to increase accessibility of recruitment and working practices for autistic people. Specialist employment support will be provided for autistic individuals as needed. Employers will also be able to access training and information about how to better support autistic people in the workplace.
By 2030 autistic people will have proven treatments for anxiety. It is common for autistic people to also have anxiety which can have a negative impact on their day-to-day life. By 2030 Autistica aims to ensure that autistic individuals and their families can receive relevant support and evidence-based therapies to prevent, mitigate and reduce anxiety at all ages. Services will also be able to identify mental health risks and intervene as early as possible.
By 2030 public spaces will be more accessible for neurodivergent (e.g., autistic, ADHD, dyslexic) people. As also identified in our research, the sensory aspects of public places can make them difficult for autistic people to access. The additional social demands can also make these challenging at times. Autistica aim to support existing public places to increase their inclusivity for autistic people and encouraging new developments to be designed with neurodiversity in mind. This may also include helping neurodivergent people to be able to access up-to-date information on existing public spaces so that they can prepare for these in advance.
By 2030 every autistic adult will be offered yearly health checks. Research has identified that autistic people have higher rates of health problems (such as epilepsy, anxiety, and depression) throughout their life span. This means that autistic people may die at a younger age than neurotypical people without support. Autistica wants all autistic people to receive regular access to specialist healthcare check-ups. This will include providing GPs with the resources to support autistic people including how to adjust appointments to suit a person’s needs. This may include information about changes to how assessments are conducted, changes in communication style between patients and doctors and increased identification of co-occurring health conditions.
By 2030 attitudes towards autistic people will change. Negative attitudes towards autistic people and their experiences can make it more challenging to access support and services, and Autistica has identified that approaches such as the Human Library can help to address prejudices people may have. Platforms such as this aim to educate and change changing negative opinions around topics such as autism. Part of this aim includes identifying successful approaches that can positively change attitudes towards autistic people so that these can be used to support change.
Here at Sensory Street we are particularly interested in Goal 4, as the work that we are doing aims to help identify the challenges that certain public spaces such as supermarkets have for autistic people. We want to use our immersive event in 2022 to help educate people about how spaces could be adapted to support neurodiverse people. We will also be adding more information about the work we are doing to our website and social media pages over the next few months, so keep checking back to learn more about our project.
Click here to learn more about Autistica’s 2030 goals on their website.
Thank you to those who attended our feedback group in September! It was really helpful to learn what you thought about our results, and your valuable insights have helped us to shape our findings and how we will present them. We are pleased to report that we have finished analysing our focus group data and so we wanted to give you an early update on the results of the study whilst we prepare the research article.
To analyse the data we used thematic analysis, which helped us to develop a series of themes and subthemes that reflect patterns in our data. Each of our themes represent a different principle or factor that may make a public place more disabling or enabling for autistic people. In the feedback group, we discussed how these principles interconnect and overlap with one another to create different sensory environments.
In our focus groups we focused on learning more about environmental and external factors that can impact on a person’s experience of a sensory environment. This is because the aim of our research project is to use the results of this study to inform society to make public places more enabling/accessible for autistic people. However, during the feedback group we also discussed the fact that there are multiple personal or internal factors that can impact on a person’s experience of a sensory environment. I found this interesting as these factors are something I have focused on previously in my research (open access article: https://link.springer.com/article/10.1007/s10803-021-05186-3). Therefore, while our sensory wheel focuses on external factors such as the proximity of other people in a space, we will also discuss the impact of internal factors in our research article.
Therefore, our wonderful Emily (@21andsensory) has designed us a sensory wheel (this shape is known by many names such as a radar chart, spider graph, web chart or star plot) of the different principles. The outer edge of the wheel represents the more disabling end of the spectrum (e.g. a higher sensory burden with multiple difficult sensory inputs), whereas closer to the centre of the wheel represents the more enabling end of the spectrum (such as a lower sensory burden with reduced or less challenging sensory input). Over the new few months we will be explaining each of these sections in more detail both on our website and on our social media pages so you can learn more about each theme.
As we mentioned in our last update, we used an approach called content analysis to identify different locations that people often report as being more difficult sensory environments such as supermarkets, eateries (e.g., restaurants, cafes, and pubs), highstreets and city/town centres, public transport, health care settings (such as GP surgeries and hospitals), and some retail shops. We plan to create a series of case studies focusing on each location to highlight how each of the principles from the sensory wheel can make these locations more challenging for autistic people.
We hope that our results accurately represent common experiences across autistic individuals. Do please send us an email or leave us a comment if you have any thoughts, questions, or feedback. We always welcome and appreciate insights to make sure our work reflects the lives of autistic people.
Our plan is to use all our data to create an interactive, multisensory experience in 2022 for people to learn more about what it is like to have sensory processing differences. We also hope to publish our findings as a research article. We will let you know how we are getting on and we will be asking for your input as we go, so look out for further updates!
We have had a very productive couple of months since our last update. Following our first found of focus groups, we have been busy analysing the responses using an approach called content analysis. We used this approach to identify which public places people from the focus groups commonly identified as particularly challenging. There were several locations that people reported as being more difficult sensory environments, such as supermarkets, shops, restaurants and health care settings (such as GP surgeries and hospitals).
In our second set of focus groups we asked people to explore these different locations in more detail to find out what they found more challenging about them. We ran four different groups in which people shared their thoughts and experiences about why these places can be challenging sensory environments, as well as how they could be adapted to be more accessible. It was interesting to hear personal accounts about different public places and how a range of factors can influence how sensory input is experienced.
Over the next few weeks, Cathy, Catherine, and I will be analysing the data across both rounds of focus groups using an approach called thematic analysis. In this approach, we will review the data to develop a series of themes and subthemes that reflect patterns of meaning in the data. From the first round of focus groups, we hope to develop themes that represent ‘principles’ of sensory environments. This will help show factors that moderate the accessibility/experience of the sensory environment across public places. From the second round of focus groups, we hope to develop themes related to specific challenging environments. This will help show more specific factors related to the accessibility/experiences of these places.
We are also releasing a second set of social media posts in August to learn more about the different locations that we identified. You can find these on our Facebook, Twitter and Instagram pages as well as our first set of posts from July.
All the data that we have collected over these focus groups and our social media posts will help us to create an interactive, multisensory experience in 2022 for people to learn more about what it is like to have sensory processing differences. We also hope to publish our findings as a research article.
In the meantime, we are going to conduct an informal feedback group online via Microsoft Teams in a few weeks’ time. This will be an opportunity for autistic individuals to give us feedback on our results and how we plan to present our findings. While we will not be recording this session, we will use your feedback to help us shape our future work. We welcome individuals who have not yet taken part in our previous groups as well as those who have.
Want to be involved in our online feedback session on the 7th of September (5:30-6:30pm)? If so, contact us by email, through our website or via social media…
So what have we been up to recently at Sensory Street? Well it has been a busy few weeks as the first of our ethics applications was approved and it was time to start collecting some data!
This month we ran our first set of focus groups exploring the lives of autistic people in public places such as restaurants, shops and more. In each group we asked people to share their thoughts about public places that they like going to and ones that are more difficult due to the sensory aspects of the environment.
It was great to have the chance to talk directly to autistic people and hear their experiences first-hand. Over the course of the week we had three different groups and everyone shared with us their thoughts about public places they enjoy and ones that are more difficult. I found it really interesting that some people said that COVID has been a positive experience for them, with the streets being quieter and restaurants being less busy and draining. I wonder what else we will learn in our future groups?
Over the next few weeks our research assistant Keren will be conducting a content analysis on transcripts from the focus groups. Content analysis is a process where researchers analyse the frequency, meanings and relationships of certain words, themes or concepts. For example, if people in the groups talked about a specific emotion or thought associated with one location (e.g. that certain locations were noisy) then the analysis would count how many people talked about this across the different groups and how often they talked about it.
We hope to have several different researchers look over the data and analyse it themselves if possible. Using a range of people will increase the inter-rater reliability, or the likelihood that the results that we find are valid.
Once we have identified the main themes and concepts from people’s responses in our first groups, we will create the questions for our second round of focus groups in mid to late July. In this second set of focus groups we are hoping to develop our understanding of ideas that people have identified as important to them.
From all the data that we collect over these focus groups and our social media posts, we hope to create an interactive, multisensory experience in 2022 for people to learn more about what it is like to have sensory processing difficulties. Want to be involved in one of our focus groups in July? Contact us here…
As part of World Autism Awareness week 2021 we wrote a post for the Experimental Psychology department at the University of Oxford which explains a little bit more about what it means to have sensory processing difficulties and how that can impact on a person’s life.
Someone who knows first-hand what daily life is like with sensory processing issues is Emily, a member of our project team. She has Sensory Processing Disorder and is Autistic.
‘Sensory processing issues are a constant thing for me – my senses are ridiculously heightened at all times and totally out of my control. My mood can change so quickly if I become overwhelmed by something (e.g. loud noises, bright lights, strong scents, unexpected touch) as I cannot filter the information coming into my brain, and I cannot regulate my emotions or understand and label my own feelings. This means day-to-day it can be quite tiring being out in the world, and as a result, I’ve become very good at masking (hiding my true thoughts/feelings), and I can only really drop that mask when I am in a safe environment like my home. Both personally, and as a team, I think we feel that it’s very important to create awareness of sensory processing difficulties as they are a key part of what makes the world quite a disabling and uninviting place for autistic people.’
Sensory processing differences are part of what can make the world disabling for autistic people. Support often focuses on interventions for an individual rather than the interaction between them and their environment.
Want to learn more about Sensory Processing Difficulties? Click here to find out more
Want to read more about our project? Check out our article on the University of Oxford’s Website here