COVID-19 resources for autistic people

We know that on the internet there is currently lot of information on dealing with COVID-19 (coronavirus), which can be overwhelming.

Hence we compiled a list of resources for autistic children and young people and their families, and a list of resources for autistic adults.

Please note that we do not specifically endorse any of the resources in the lists below. You will still have to decide which ones you think are suitable for you. If you’ve previously come across any other additional resources you’ve found useful, send us an email as we may want to include it.

COVID-19 resources for autistic children & young people:
Please click here.

COVID-19 resources for autistic adults:
Please click here.

Talking about Autism

Research summary:
Talking about Autism – Autistic Parents’ Views and Experiences of Talking about Autism with their Autistic Children

Thank you for taking part in our research last year. This research summary tells you what we did and what we found.

What was this research about?
In 2019, researchers at CRAE published a survey about how parents talk to their autistic children (under the age of 18 years) about their autism diagnosis. Some of the most insightful responses to this survey were from autistic parents of autistic children, so we launched a new study that specifically sought the views of autistic parents.

What did we find?
We collected 34 autistic parents’ views and experiences of talking about autism with their children (autistic and non-autistic). Results showed that most (94%) parents told their children about their diagnosis. Whilst most (87.5%) parents did not receive support in this regard, around half (53.1%) did not feel the need for this anyway. About two thirds (68.8%) of parents were satisfied with the way the diagnosis was disclosed to their children.

We also identified two key messages from our survey:
(1) The need to be open and honest about the diagnosis
Parents felt that children have the right to know about their diagnosis, emphasising that it is nothing to be ashamed of. Parents spoke about the importance of speaking freely, openly and honestly about autism, as early as possible. Whilst it was felt to be important to emphasise the positive aspects of autism, parents also noted that the negative aspects should not be ignored.

(2) The need for appropriate support
The diagnosis of autism was often framed negatively by the professionals involved in disclosing a diagnosis, and support was felt to be needed in this regard. The important role autistic adults can play as role models for autistic children was noted.

What happens next?
We hope that the knowledge and expertise that autistic parents provided in our research can be helpful for other parents (both autistic and non-autistic) as well as professionals working with autistic children and their parents.

Thank you again for taking part in our research – we really appreciate it!

Lok Man (Tiffany) Lui
(supervised by Dr Laura Crane and with input from Prof Liz Pellicano)

Find out more about our earlier work on this topic:


Participants wanted! Meditation study

We are looking to find out more about the effects of a daily meditation programme in autistic people. Here is some important information about the programme and study: The programme will be delivered through an application on your smartphone, and will take 10 minutes of your time, every day for 2 weeks. The meditation will consist of breathing exercises, guided by the smartphone application. You will be asked to complete sets of tasks and questionnaires at different time points: 

  • Before the meditation programme starts (it will take about 1 hour to fill out questionnaires and complete tasks)
  • Right when the meditation programme ends (it will take about 1 hour to fill out questionnaires and complete tasks), and
  • Four weeks after the meditation programme ends (it will take about 1 hour to fill out questionnaires and complete tasks). 

If you fulfil the criteria and consent to participate, the entire study from start to finish will take around 8 weeks (from the time you consent, to starting the 2 week meditation programme, to filling out the final questionnaires 4 weeks after finishing the programme). You will be able to complete the study from your home. After completing the study, you will receive a 20 pound online shopping voucher as a token of our appreciation. Now that you know a little more about what to expect, please answer the following questions that will determine whether or not you fulfil the criteria to participate in the study. If you do not fulfil the criteria to participate in this study, you will have the opportunity to sign up for the CRAE participant database, to be contacted about other research projects. If you do fulfil the criteria to participate, you will see a message at the end guiding you through the next steps. You can change your mind at any point about your participation in the study, and this questionnaire does not imply any consent to participate.  Please contact us at crae.meditation@ucl.ac.uk if you have any questions.

For a summary of the project, you can watch this video: https://twitter.com/CRAE_IOE/status/1193943540755247104.

For more information and to check whether you can participate, please click the link and answer a few questions:
https://uclioe.eu.qualtrics.com/jfe/form/SV_blpYIRvviRO7F7T

Perceived credibility of autistic witnesses

CRAE’s Laura Crane and colleagues investigated perceptions of autistic people within the criminal justice system.

By showing videos of autistic mock witnesses to a group of mock jurors (simulating a real courtroom setting), they found that the testimonies of autistic witness were judged to be as credible as those of non-autistic witnesses. Importantly, this was only when no information about autism was provided to the mock jurors. When the mock jurors were told the witness was autistic and given information about autism, autistic witnesses were judged to be more credible than non-autistic witnesses. This suggests we need to be careful about how we inform jurors about autism, in case it biases the way they view an autistic witness.

Read more about it here: https://bit.ly/2mdCJ2m


CRAE at the 12th Autism Europe Congress

Several CRAE team members headed to the Autism Europe Congress in Nice, France in September 2019! This year’s conference theme was “A new dynamic for change and inclusion”. It aimed to share research and experiences towards an inclusive society for autistic people.

CRAE members shared their own research findings through a variety of talks and poster sessions. Below is a list of what we presented.

FRIDAY, 13 SEPTEMBER:
 •  Talk – Scholars of human expression: The experiences of autistic performing arts professionals and attitudes of performing arts employers.
 •  Poster – Exploring participants’ views on a supported work internship programme for autistic and learning disabled young people.
 •  Talk – Comparing autistic children’s social communication behaviours in a robot-assisted vs adult-led activity.

SATURDAY, 14 SEPTEMBER:
 •  Poster – A double-edged sword? Factors associated with increased perceptual capacity in autistic and non-autistic individuals.
 •  Workshop – Keep calm and robot on: Practical tips from DE-ENIGMA for working with robots and autistic children. (https://bit.ly/2lujwcq)

SUNDAY, 15 SEPTEMBER:
 • Oral Session – Family and stakeholder experience or support.


Participants wanted! Perceptual capacity in autism

CRAE’s PhD student Jana Brinkert is asking autistic people, aged 18-40 years, to take part in her study on attention and perceptual capacity (the information that we can process at any given time).

The study involves recordings of your brain activation (EEG) while you complete two computer tasks. We are inviting anyone who is between 18 and 40 years old and is a native English speaker to take part in our studies. We are specifically interested in the experiences of autistic and non-autistic people.

The study will involve:
• Computer based tasks
• Questionnaires
• Paper based puzzles

The study takes 3-4 hours and will take place in central London.

If you are interested in taking part, please follow the link below or email Jana at j.brinkert.16@ucl.ac.uk.

https://uclioe.eu.qualtrics.com/jfe/form/SV_9nmrqdihfyoCNHT

Please note that all data you provide is kept confidential and will be safely and securely stored in line with GDPR compliance.


Participants wanted! Mental health outcomes for autistic people

Little is known about how best to prevent or treat poor mental health in autistic people. Research provides important information about how well treatments work, yet it does not consider how important different outcomes are for autistic people. For example, is relief from depression more important or less important than serious treatment-related complications?

To address this, researchers at UCL are #AskingAutistics to join a discussion to explore the different outcomes. Autistic participants will be reimbursed £75 to join the discussion, plus up to £25 in addition for travel.

For more information, please get in touch with Lawrence (lawrence.best.11@ucl.ac.uk).

Please note that all data you provide is kept confidential and will be safely and securely stored in line with GDPR compliance.


Podcast: Double Empathy – Part 1

CRAE’s Brett Heasman published a podcast series about double-empathy and bridging the gap between autistic and non-autistic people. Brett talks with Kerrianne Morrison, Noah Sasson, Sue Fletcher-Watson, Catherine Crompton and Damian Milton about research in this area.

The podcasts are animated to make them more accessible and engaging for listeners! Check out the first episode here: bit.ly/DEpodcast


Learning how to read autistic behaviour from interactions between autistic people

In 2018, Jaswal and Akhtar wrote a paper that questioned the assumption that autistic people are socially uninterested. They provided a compelling argument, explaining that this apparent lack of social motivation in autism was not consistent with how autistic people describe themselves, and did not recognise the many other reasons why autistic people may behave in unconventional ways. The paper has attracted comments from more than 30 scholars across many disciplines.

CRAE’s Brett Heasman and Alex Gillespie (The London School of Economics and Political Science – LSE) published their response, suggesting that by examining how autistic people appraise autistic behaviour, it can provide solutions to improving neurotypical-to-autistic interaction.

Read the original study here https://bit.ly/2ZevkOW and Brett’s and Alex’s full response here https://bit.ly/2LLSOI7


Adapting interview experiences for autistic people

CRAE’s Anna Remington,Laura Crane and Brett Heasman have been working on a project with the Centre for Applied Autism Research (CAAR) at the University of Bath, looking at adapting interview experiences for autistic people. People with autism are often disadvantaged in employment, healthcare and police interviews because impairments in social and cognitive processes (such as memory and communication) can affect their ability to relay relevant and important information.

This project aims to elucidate the difficulties that autistic adults have in reporting information in these contexts, and to develop appropriate methods of interviewing to support them.

At the recent Autistica Discover Conference, CAAR masters student Jemma Nicholson presented initial insights from the project in the poster session.

Read more about the project here: https://www.bath.ac.uk/projects/supporting-autistic-adults-in-interviews/?


RECAP: How I Communicate Conference

In July 2019, CRAE’s Brett Heasman presented at the “How I Communicate” conference in London. Organized by Dr Rebecca Wood (SGDP, King’s College London), this conference explored the diverse ways in which autistic people communicate. Presentations were done in various formats e.g. artwork, musical compositions, theatre and comedy in the interest of inclusivity. A particular focus was placed on non-verbal forms of communication in order to consider how the participation and inclusion of autistic people who are minimally verbal can be improved.

Brett presented his research on neurodivergent intersubjectivity, using his animated visual form. His presentation looked at his recent research on how autistic adults build a shared understanding and therefore communicate with one another. Analysis suggested that an assumption of common ground, when understood, leads to rapid rapport and when not understood resulted in potentially disruptive utterances and a low demand for coordination. These findings reveal potential for unconventional forms of social relating that differ to that of neurotypical norms. Interactions between autistic people take a distinct shape and therefore have their own intrinsic value.

The conference was opened by Professor Francesca Happé and other presenters included:

 •  Jon Adams (artist, poet and speaker)
 •  Freya Cumming-Webb (researcher and presenter)
 •  Dr Marion Hersh (Senior Lecturer in Biomedical Engineering, University of Glasgow)
 •  Jamie Knight (developer, writer and public speaker)
 •  Dr Shaun May (Senior Lecturer, University of Kent)
 •  Dr Damian Milton (Lecturer in Intellectual and Developmental Disability, University of Kent)
 •  Sarah Playforth (speaker and campaigner)
 •  Prof Nicola Shaughnessy (Professor of Performance, University of Kent) & Dr Melissa Trimingham (Senior Lecturer, University of Kent)
 •  Anya Ustaszewski (musician and composer)


DE-ENIGMA Newsletter

In the December 2018 – July 2019 edition of the DE-ENIGMA newsletter, the DE-ENIGMA team at CRAE discussed completion of our final two studies working with children on the autism spectrum – adding up to seven London studies since the start of the project!

It highlighted findings from their April and July 2018 studies that suggested some parts of tablet games and some of Zeno’s actions weren’t easy to understand. From this, the team were able to make appropriate changes to the experiment which led to substantial changes in understanding, compared to earlier studies.

They also discuss the final DE-ENIGMA study that ran from March to May 2019 whereby there were two versions of Zeno: one that was very predictable in the type and timing of his actions and another less predictable. This study tests claims that more predictable robots can benefit children, and are easier to interact with. The DE-ENIGMA team is now comparing the two groups to test the claims.

Finally, the newsletter looked at what is next for the DE-ENIGMA team at CRAE. The project has now finished our studies with schools and teachers, and Zeno is taking a well-deserved rest. Back at the lab, we are analysing the data we have collected to see whether there were any differences in the way that children interacted with very-predictable Zeno compared with less-predictable Zeno. Our findings will be written up in scientific papers in order to share our results with researchers. We will always be looking for ways to share the results with schools, families and the wider autism community.

For project news, follow @DeEnigma_EU and @CRAE_IOE or visit www.de-enigma.eu



Educational needs of children with neurodevelopmental disorders

CRAE’s Maria Ashworth has published a new paper with Jo Van Herwegen and Olympia Palikara on the views of professionals working with children with Williams Syndrome, Down Syndrome or autism.

Their study examined professionals’ knowledge of either Williams Syndrome, Down Syndrome or autism and their views about the type of support children should receive. Although professionals generally had a lot of knowledge about specific neurodevelopmental features and difficulties associated with these features, more complex difficulties were less likely to be recognised. Further, almost half of the professionals said that they had been giving no specific information about the disorder they were working with when they first started. Instead, they had to rely on finding their own information. Because of this, the researchers suggest providing professionals with more in-depth training, including lesser well-known difficulties of a developmental disorder and how these difficulties may affect children in the classroom.

Read more about the study here: https://bit.ly/2YoUkTj


Discover Conference Recap: Autism and Employment

On June 27th 2019, we visited Autistica’s Discover Conference at the University of Reading. Here are some of the insights we gained when attending the Breakfast Workshop ‘Autism and Employment’ with Amy Walker (Founder of Neurodiversity Works, Diversity & Inclusion Coordinator at GroupM), Brett Heasman (CRAE) and Andrew Harding (Fujitsu). 

Amy started the breakfast session by sharing her personal autism and employment experiences as a young autistic person. She shared with the audience that she denied her autism diagnosis when she attended university. However, upon graduating she felt as she could no longer keep this up. When suddenly losing all the structure that she was used to from university, Amy felt that she was not ready for work and work environments. So instead she started to attend employability schemes provided by charities. However, these were often unaware of the needs of autistic jobseekers. “I was on the scrapheap of society again.”
 
However, she found Twitter to be a very empowering experience for her. Other Twitter users shared their stories and she realised that they face similar issues. It was also via Twitter that Amy found out about Ambitious about Autism’s Autism Exchange. Autism Exchange is a work experience
programme for autistic young people in leading organisations. Amy applied and was accepted into the graduate scheme at a civil service organisation. “I didn’t realise that someone like me could work in civil service.”

This was Amy’s first real opportunity to work in a professional office environment, in a large organisation. Yet she quickly encountered some difficulties. For example, working hours. Travelling during rush hour caused her meltdowns and panic attacks. Sharing these difficulties with the Autism Exchange team, they then asked for reasonable adjustments. In this case to be able to come in/leave before or after rush hour. “I was unaware that I could ask for reasonable adjustments, thinking that flexible work hours for example would be too big an ask.”

This internship experience allowed Amy to build up her confidence over the next couple of weeks. However, following her internship experience, she still found it very hard to get any interviews for other jobs. As a result, she then started a campaign to raise awareness about the Autism Exchange internship programme, with the aim for other organisations to join this scheme.

In spring 2018, Amy received another internship opportunity at m/SIX, a media agency. Here her internship lasted several months and was paid. Whilst working at m/SIX, Amy discovered that the holding company, GroupM, has an autism focus employment inclusion group. “I approached the holding group to share my experiences at m/SIX, and together we started to redesign the job descriptions and working practices to create a more inclusive environment for the neurodiversity community”.

Following her internship at m/SIX, Amy was informed that a Diversity & Inclusion Coordinator role was coming up at GroupM. She applied and got it! Amy has now been there for just over 10 months. “This inclusive environment makes me feel very welcomed!”

After hearing about Amy’s experiences, CRAE’s Brett Heasman shared some preliminary research findings on neurodiversity and employment. Brett’s research includes more than 500 participants so far, and several key barriers or enablers to neurodiversity employment are emerging. These include:

DISCLOSURE: 70% of participants disclose their diagnosis after starting job.
 •  Reasons FOR disclosing: 24% disclose after encountering difficulty in the workplace, to enable greater understanding and to manage expectations
 •  Reasons for NOT disclosing: Negative discrimination is a huge factor why participants do not disclose their diagnosis. Additionally, 15% say that the benefits of disclosure are not clear, whilst others voiced concerns about identity and stereotyping

MASKING: Masking describes the strategies that autistic people use to fit in. 85% of the participants say that they mask in the workplace.
 •  Reasons FOR masking: wanting to fit in, not consciously aware that they are doing it
 •  Reasons for NOT masking: do not know how to do it, not receiving adequate support because of it, emotional drain and impact on mental health, risk of being found out

ADJUSTMENTS: Adjustments are changes to the working environment and practice, designed to make jobs and work more accessible. Many are free or low cost, and easy to implement. These adjustments can work for all employees and not just autistic employees. Despite 77% of participants rating adjustments as important, only 32% of the participants surveyed asked for adjustments in their workplace.
 •  Reasons FOR asking: benefits for the employee (comfort, sensory, accessibility), should be protected by equality act, tests wider organisational culture towards neurodiversity
 •  Reasons for NOT asking: can be refused if deemed to impact other employees, can be seen as a trouble maker for asking, can involve great effort in seeking to get adjustments implemented, pathways to asking for adjustments not clear

Common adjustments fall into four categories:
 •  Physical space: having an allocated desk, no strip lighting, temperature controls, spaced seating
 •  Equipment: providing ear plugs, site blocker software, online resources, headphones
 •  Social: relaxing social obligations, provide spaces for eating lunch away, being aware of clothing & perfumes, providing quiet spaces
 •  Management: provide flexi-time, explicit instructions, weekly plan, extra breaks

The research also highlights that autistic participants think that a manager’s traits and values, such as their knowledge of autism, being empathetic, and exhibiting a desire to retain staff, are a big factor when it comes to neurodiversity employment practices. Additionally, resources available, such as financial costs, convenience for managers, and time and space for adjustments, were also seen as barriers or enablers.

Brett’s presentation was followed by Andrew Harding, who briefly introduced some of the adjustments that Fujitsu has started to implement at their offices. These included adjusting the promotion panel processes by removing questions like “Is this individual comfortable with ambiguity?”, changing their job descriptions to attract neurodiverse talents, and introducing a buddy system. By having a buddy at work (autistic or non-autistic), the employees can confidently share brief updates on their state of mind and wellbeing, as well as meeting for a chat without any social pressures if wanted, or share information about any additional adjustments they would like to see. Over the last couple of months, Fujitsu has already seen huge benefits since introducing these adjustments. It is encouraging to hear that this is only the beginning of their journey.

– – – The breakfast workshops were not filmed/recorded, however the Discover Conference keynote lectures and other sessions were recorded and can be viewed here.



Neurotypical people over-estimate how helpful they are towards autistic people

CRAE’s Brett Heasman has just published a study on how autistic people are perceived by neurotypical people. Brett’s research used a computer game where 255 neurotypical players either believed they were playing with an autistic or non-autistic player. This player was actually an artificial confederate that was programmed to behave the same way across all interactions.

When neurotypical players believed they were playing with an autistic person, they perceived them as more intelligent and useful than when they believed they were playing with a neurotypical person. Moreover, when the neurotypical players believed they were playing with an autistic person they over-estimated how helpful they were compared to their autistic counterpart in completing the game collaboratively.

This research concurs with existing reports that the label of autism has a positive effect on social perception, leading to a higher perception of intelligence. The findings also suggest that people may perceive themselves as more helpful to autistic people than they actually are in their behaviour and actions. These findings help to explain why diagnostic disclosure can still result in negative discrimination; hence why disclosure not always straightforward.

Read the full paper here: https://bit.ly/2ZyPCm5


PARTICIPANTS WANTED! Autistic adults’ experiences of camouflaging

Julia Cook, a PhD student at UCL, is seeking autistic adults of all genders who use camouflaging, masking, or compensatory strategies during social situations to take part in some new research.

Taking part involves:
 •  Completing online questionnaires
 •  You may then be invited to UCL where you would complete a short social interaction, reading task, and interview

If you would like to get involved or would like some more information please email Julia at julia.cook.18@ucl.ac.uk

Please note that all data you provide is kept confidential and will be safely and securely stored in line with GDPR compliance.


PARTICIPANTS WANTED! Are you LGBT+ and autistic?

Are you LGBT+ and autistic? Are you interested in taking part in research at CRAE? We are looking for individuals for an interview study about your experiences and views on autism, sexuality and support services.

We are inviting anyone who identifies as LGBT+ and autistic, is over the age of 18 years old, lives in the UK and is native English speaker to take part in our study. We are interested in the experiences of diagnosed, and self-identifying autistic individuals.

The study will involve:
• Questionnaires
• Individual interviews, in a method of your choice

Please note that all data you provide is kept confidential and will be safely and securely stored in line with GDPR compliance. For additional information and the survey please email Monique Bellchambers-Joseph at m.bellchambers-joseph@ucl.ac.uk