The SPAACE project: Speech Perception by Autistic Adults in Complex Environments

Narrative

Researchers (in alphabetical order): George Bendo, Emma Gowen, Hannah Guest, Graham Hanks, Chris Plack, Alexandra Sturrock

In 2016, Autism@Manchester hosted a workshop to find out the autistic community’s priorities for research. From this meeting George Bendo and Graham Hanks both identified a lack of adequate research into autistic people’s experiences listening to speech when other sounds are happening at the same time. Graham described complex listening environments in terms of a noisy café. He wondered why it seemed so difficult for him and other autistic people to listen to someone talking when their speech was competing with other sounds: background chatter, music, and sounds of cooking and serving food. George highlighted distractions in audio recordings: static, or unintentional noises made by the people talking. Both wanted to know more about what was happening for autistic people, its impacts, and what could be done to manage the effects.
The SPAACE project was born when Graham and George, along with autism researchers from Autism@Manchester Emma and Alex, approached auditory scientists Hannah and Chris from ManCAD (Manchester Centre for Audiology and Deafness). This project has since gone on to yield several exciting studies and data that will ultimately contribute to improved understanding in the research field and clinical support and self-help for the community. The team has obtained, analysed, and presented findings collaboratively, meaning this project represents an example of community collaboration across the project’s life cycle. A truly exciting public engagement project.

The rest of this narrative will explain the findings from our work so far.

Chasing the conversation: Autistic experiences of speech perception

The first study was conducted by our core research team and aimed to elicit detailed first-person accounts of autistic individuals’ abilities and difficulties in perceiving the spoken word.

What we did: Interviews were conducted with nine autistic adults about their experiences of speech perception, factors influencing those experiences, and responses to those experiences. The results of these interviews underwent thematic analysis (identifying and categorising ideas that appear in the data) by Alexandra and Hannah with Graham as our “expert by experience”, ensuring we embedded a neuro-diverse interpretation of the findings.

What we found out: Most interviewees reported pronounced difficulties perceiving speech in the presence of competing sounds. The difficulties expressed ranged from powerful auditory distraction to drowning out of voices by continuous sounds (for example, a fan). Impacts were diverse and sometimes disabling, affecting socialising, emotions, fatigue, self-image, and career. One autistic individual said of background noise, “I don't think it affects [other people] in the same way that it affects me! I think to them it's probably just an annoyance, whereas to me, it's affecting my entire evening.” A wide array of coping mechanisms was described by the participants.

What does this mean? Findings from this study revealed that autistic listening differences are widespread and can have severe impacts on many areas of people’s lives. These differences seem not to be well understood, and interviewees were especially frustrated that clinicians don’t provide better explanations, advice, or understanding.

Going forward, we need better designed lab research to figure out what underlies the various forms of listening difficulty, as well as more immediate help for people struggling with listening problems. To support this, we knew we would need to recruit larger groups of participants to explore their diversity fully. Like all good qualitative research, our first study has helped us design later aspects of our work.

Despite the preliminary nature of the work, the NIHR judged that clinical service providers would benefit from knowing its results and created an “Alert” to highlight it: NIHR Chasing the Conversation

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The diversity of speech perception difficulties among autistic individuals
Further research was conducted. Findings from our first study described widespread autistic listening differences with significant impacts, but these results came from interviews with just a few people. Our next study tackled some of these limitations by employing a larger-scale survey to explore autistic listening experiences.

What we did: We gathered survey data from 79 autistic individuals aged 18-55 years with no diagnosed hearing loss. The questionnaire included 20 multiple-choice questions on listening abilities and difficulties and three free-text (interview-style) questions on listening experiences. Hannah and George analysed the data. Multiple-choice questions were analysed quantitatively, i.e., by calculating how many people ticked each box. Free-text questions were analysed using content analysis. This meant that we took findings from our first study and turned them in to a checklist of concepts (called a coding frame). An example concept is, “Impact of listening difficulties on education”. Then we went through each participant’s survey responses and decided whether they had mentioned each concept on the checklist or not. We recorded the quotes that showed this, then calculated how many people had mentioned each concept. We also recorded any new concepts that we found, that weren’t on our checklist.

What we found out: Our multiple-choice questions showed that almost all respondents experienced significant listening difficulties, and these individuals all felt they had greater difficulties than their non-autistic peers. More complex background sounds caused greater difficulties, especially background voices, and listening difficulties impacted all areas of life (socialising, career, self-image, etc.). Our free-text questions confirmed these findings, and we found that there was great diversity in the types of listening difficulty reported (strongly supporting our previous interview findings). For example, “I don't seem to have the ability to focus on one sound, or block out unwanted sounds. Aside from the difficulty hearing, sound coming from multiple directions is very uncomfortable to me - it puts me into fight or flight mode very easily”. This suggests that there are multiple types and causes of listening difficulty among autistic people, which could be important when designing future hearing research or techniques for handling difficult listening situations.

What does this mean? This research has been accepted for publication (December 2023). Once published, we hope that our results will help to improve future research and support the autistic community. It is really clear that individuals have varied listening difficulties and so support should be guided by individual need. In addition, future research needs to explore this variation. More basically, it is also clear that a wide range of groups need better understanding of autistic listening differences: the fact that they exist, what situations create problems, and how to help. These groups include clinicians, communication partners, educators, employers, and many others. The hope is that all these groups may benefit from the improved understanding of listening differences that these studies offer.

Our findings from the first two studies have been presented at: ITAKOM (the It Takes All Kinds Of Minds conference, 2023, Edinburgh, https://itakom.org/); the Kings College London Sensory Processing Special Interest Group (2022); and the Aural Diversity Network (2021, https://auraldiversity.org/network.html).

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Exploring listening Strategies devised by the autistic community
In our first two studies, autistic individuals mentioned developing their own strategies to manage difficulties with speech perception. They also highlighted very little in the way of formal support available from traditional channels, e.g., audiology services. We wanted to know more about those strategies, with the aim of being able to feed them back to the community to guide self-help strategies, and hopefully to feed in to clinical advice given by specialist services.
This research has been conducted by trainee audiologist Eden as part of her clinical Masters project. She used an online survey plus follow-up questions by email to identify strategies that autistic people use to handle listening difficulties. She was interested in finding out what strategies are used, how they were learned or devised, what situations they are used in, and how useful they are. She has completed collecting data and it is now being analysed.
We hope that the data can be reported not only in a scientific publication but also in a more accessible form, ready for use by autistic people and clinicians. We are keen to support individuals but also the development of resources for clinical services.

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Going forward with the SPAACE project

There are several projects ongoing:
First, we expect to see the results of our survey study on listening experiences published very soon, in an article entitled, “The diversity of speech perception difficulties among autistic individuals.”

Secondly, we’re excited to see forthcoming results published by Kate Blackthorne, a ManCAD PhD candidate who is independent from the SPAACE project but has done some really exciting related work. Kate is writing up important data gathered in the lab and online, which follow on from some of the themes highlighted in this project, using listening tests and large sample sizes.

Thirdly, we are analysing and preparing to publish the findings of Eden’s work, which will include guidance aimed at clinicians and members of the autistic community.

Finally, we aim to submit a grant to address some of the many gaps in autistic listening research, highlighted by our self-report data.

All our work has been “co-produced” by autistic and non-autistic colleagues, and this collaboration has been essential to its success and practical relevance. Our take-home messages about collaborative working are:

•With tailored support and training, autistic researchers were equipped to design the research, recruit participants, analyse qualitative and quantitative data, publish the results, and present findings to a variety of audiences.
•Co-production benefitted the autistic and non-autistic researchers equally, educating each on methods, skills, and perspectives that they can deploy in future work.
•More important still were the immediate benefits to the research. The formulation of the research questions, the design of the data-collection methods, the wording of the materials, the outreach to the autistic community, and the interpretation of the data would all have suffered in quality and validity without guidance by autistic insight.
•We believe that co-production with the autistic community (rather than more limited “involvement” of the community) is essential for any autism research study.

Category of impact	Attitudes and behaviours, Awareness and understanding, Health and wellbeing
Impact level	Benefit