ReASoN monthly meetings

 Monthly online meetings

As everyone in the network knows we love to get to know one-another better and share topics of interest with the group. Hence, we would love it if any network members could volunteer and introduce themselves to the group at one of our monthly meetings. So, if you are willing and able to give a 5-10-minute introduction about yourself and your work/research/interests, please add your details to the doc below before the meeting:

https://docs.google.com/document/d/13Gpo5n-dFc1KexrZX7cnuEkKWIrDPN3pdUNDQzblQXM/edit

For your introduction you could talk to us live at the meeting or if you would rather record an introduction, create a short film, or write about yourself, this would also be great, just let us know on the document!

Additionally, if you would rather avoid talking about yourself but have a topic of interest that you think would be fun and interesting for the group to discuss please sign up and provide a bit of information around the topic on the document via the link!

 

Our sixth monthly online meeting

At our sixth monthly network meeting Phillipa Howard came to talk to us about her research which explored communication preferences in individuals with autism. Many individuals with autism have trouble with different modes of communication, so much so that it’s included in the way we diagnose ASC and these difficulties can often lead to difficulty socialising, accessing services and prevent people from flourishing. In the research, Phillipa aimed to explore:  

  • What modes of communication do autistic people prefer across a range of scenarios? 
  • What reasons are there for these preferences?  

Interestingly, Phillipa explained that people with autism most preferred online written forms of communication across a variety of contexts (accessing services, education, research etc) because it gave them more time to think and limited sensory aspects. “Anything but the phone” was a common theme as many people found it came with processing challenges and generally induced feelings of anxiety. Unfortunately, Phillipa found that many people would avoid communicating at all and also that often autistic people mask when talking to strangers.  

As a group, we discussed the conclusions that could be drawn from this research: context is vitally important to the modes of communication preferred by people with autism and reliance on phone calls can create massive barriers in access to healthcare and social interaction. Group members stressed that yes, it depends on the context, so we need to offer far more flexibility. There was not really any one mode of communication that prevailed, so giving people the option would provide people with better access to services and a better sense of inclusion. Members of the network felt relieved that there is now some research to reflect the barriers they face when accessing healthcare services, and that despite limited resources being available in many NHS settings, something needs to be done about the modes of communication offered to stakeholders.  

A huge thank you to Phillipa for coming to share your research with us, it prompted lots of very thoughtful discussion. 

Phillipa recently published her paper, which you can read in full here: https://journals.sagepub.com/doi/full/10.1177/13623613211014995 

 

Debbi and Sumeiyah then updated us on the ReASoN focus groups which aim to explore what the support and research priorities of neurodiverse UK HE students are. So far, their focus groups have had 15 participants across 4 groups, all identifying as neurodivergent, and 80% identifying as female. 

Debbi and Sumeiyah expressed thanks to everyone who had participated in a focus group or had shared the details and expressed gratitude that the focus groups had been such open and safe spaces.  

There is still interest in holding more focus groups, so if you’re currently a student or have graduated from higher education in the past 5 years and would like to participate, we’d love to hear about your experiences and can be contacted via the ReASoN email:  The data is expected to be released by February 2022.  

We will run meetings in October and November as usual. There will be no meeting in December, but normal meetings will resume in the New Year. 

Our fifth monthly online meeting

Our fifth meeting will took place on Tuesday 27th July, 5.30-6.30pm British summer time on zoom.

Abby’s (rough) summary of the discussion at the fifth meeting:

At the July meeting Sumeiyah talked about the focus groups we will be running soon (please see https://blogs.exeter.ac.uk/neurodiversity/reason-focus-groups/ for details and the link to sign-up which is at the bottom of that page). She also told us about Neuro Pride Ireland, running from the 2nd to 8th August. We encourage our members to join in and contribute if this is something that interests them.

We then spent the rest of the meeting broadly discussing language and terminology such as “neurodivergent” and “neurodiversity”. We explored whether network members used and identified with those terms. On the whole, it seemed that members agreed that neurod* terms were useful ways for people to identify with a group, or to help others understand who they are. However, there are issues with this as the term is so broad that it doesn’t really capture individual people’s personalities, strengths or weaknesses. We also discussed how you might identify based on the types of difficulties or diagnoses you have, for example if you consider yourself to be autistic with a bit of ADHD, or ADHD with a bit of something else. We took a little tangent into talking about other terms such as autistic, and some people said they preferred use of specific diagnostic labels as that was a better fit for their self-identity.

We talked about how network members express their identity as part of teams in academia and higher education, and how some use a ‘position statement’ to explain that they are part of a neurodiverse team. In some cases people said they were explicit about the composition of the team, e.g. a neurodiverse team with two neurotypical people, one autistic person and a person with ADHD. These position statements had a positive response from the group, as through the discussion it seemed that really there were no strong feelings about terminology that people use, it was more about the discussion that could be had about your neurodiverse traits and people using terminology with a positive and inclusive intent.

We also talked about how the terms neurodivergent and neurodiverse were intended to be inclusive- to embrace the complexity of humans as individuals, but there are dangers that this use can be tokenistic rather than because of genuine inclusive attitudes. For example, some businesses promote themselves as neurodiverse, but don’t make it explicit how they are neurodiverse or what this means for their recruitment processes and employees, which are the things that were important to members looking at these places. We briefly touched on the difficulties of choosing whether or not to disclose diagnoses or neurodivergence when applying for courses and jobs, and how individuals do not know whether job applications are or are not successful because of their disclosure, or because they were not a suitable candidate. We chatted about how some companies will interview applicants who meet essential job criteria if they are neurodivergent, and members had mixed feelings about this on the whole. We spoke about some companies now proactively seeking neurodivergent staff as their creativity, focus and other traits were valued.

We also discussed how this is really an issue about inclusion and equality, which can be overshadowed by focussing too much on terminology. Members shared various useful and interesting resources during the meeting, which I have put on the “resources” page.

We will not have a meeting in August, and will resume again on the last Tuesday of September.

Our fourth monthly online meeting

At our fourth monthly meeting Felicity introduced us to the next part of the ReASoN networks’ research, where upcoming focus groups will be delving further into neurodiverse student experiences in higher education and exploring:

  1. What are the support priorities of neurodiverse UK HE students?
  2. What are the research priorities of neurodiverse UK HE students?

If you’re currently a student or have graduated from higher education in the past 5 years and would like to participate, we’d love to hear about your experiences and can be contacted via the ReASoN email: 

As usual we love to discuss shared topics of interest within the group and this month Trevor was brave enough to volunteer as tribute to talk about his work and research.

Trevor introduced us to the Emotional Logic programme that he has been working on, sharing images which demonstrate the journey of emotions that people have when they lose something they value. He explained to us that this model has been used to help people overcome personal traumas and is also currently being using in a neurodiverse school in South Africa. Here the children use pattern cards to map their emotions which in turn makes it easier to develop connections/understanding in teachers, parents and carers.

Trevor described the model as emotional steppingstones where during your emotional journey you will often jump forwards and backwards to different stages rather than moving chronologically through the set stages. He also demonstrated how emotional ‘whirlpools’ can halt progression of the pathway to acceptance and cause people to spiral in their emotions and actions. Effectively, the spiralling occurs when 2 conflicting emotions occur at the same time and cause distress for an individual, this could manifest as fatigue when someone feels both shocked and depressed or could lead to a destructive behaviour when a person feels anger and depression at the same time.

Some of the shared images that Trevor showed us can be accessed here: Turning Points and Whirlpools and Life and Growth Cycle

As a group, we then discussed the uses of the resources and figured that even though it may not necessarily help our HE neurodiverse individuals, it would be a good way of helping younger individuals in school to develop an understanding of their own emotions and enable them to communicate their feelings with others. However, a running theme, that our members really supported, was that the Loss reaction pathways were tapered to the individual. This meant that an individual’s values, emotions, reactions and own experiences, that might not be a problem for a neurotypical individual, could be used in this model. For example, the standardised terms to describe trauma and diagnose PTSD exclude events that can be traumatic for a neurodiverse individual; but for this model whatever the individual determines to be of value or to be traumatic can included and hence this method doesn’t exclude the neurodivergent community or dismiss their trauma.

 

Our third monthly online meeting – Brian Irvine

Fran began the session with introductions and a discussion about the content of the previous meeting. This was focussed around students facing relationships, including the quality of students’ relationships with support staff and the need for knowledgeable, trained staff. For each student, there is a need for individual tailoring, and it was thought that mentoring can be hugely beneficial if delivered effectively.

Hence this month, the speaker was Brian Irvine – a specialist in (autism) mentoring with aphantasia and currently in the second year of his PhD, developing a framework of best practice for Specialist Mentoring in higher education. His use of a black background for his slides helped to decrease retina burn, which was a bonus for us. Brian’s enthusiasm for a positive change in the support available for autistic students at university was definitely infectious and lead to a discussion about a new and improved term for ADHD. Brian favoured Variable Attention Stimulus Trait (VAST), but other ReASoN members leaned towards other alternatives such as Attentive Differences Hyperfocus Dynamism. All suggestions showed that removing the word disorder is a necessary and important change.

He also sparked interesting conversations about how many students actually disclose their neurodivergence to their university. Highlighting that potentially medics feel less able to disclose this than students on other courses as doubts are cast over their “capability”. His insight into the autism mentor schemes currently available to UK students was eye opening – for example, of the 30 autism mentors across the UK only 8 are autistic themselves. The barriers around the role of a mentor at a management level can also be difficult. It takes a lot of time and willingness to change a big institution, as well as the hearts and minds of academics.

Changing an institution from making accommodations for specific students to an inclusive institution would actually benefit every student. Brian talks of how this change would lead to not only autism gain but also neurotypical gain – overall, he coined this neurodiverse gain.  No student finds monotonous lectures engaging or stimulating, regardless of their neurotype, so any change away from this would be hugely positive.

Additionally, he pointed out the importance of empowering people to be self-advocates and how everyone becomes a mentor at some point in their journey as they take someone under their wing. In terms of self advocation, as a mentor, Brian will send messages/emails with his student, not for his student. In his mentoring and support, Brian also uses a three-part model with his students which includes diagnostic (identifying issues), prognostic (finding solutions) and motivation (kindly reminders to maintain solutions). The framework aligns with that used by movement such as BLM.

Brian’s slides and notes are here for you to access: SpAutMentoring by Brian Irvine

 

Following on from this, some of the ReASoN network members went on to introduce themselves. Firstly, Beth spoke about her experience as an autistic student who went to university and is now in the final year of her PhD, against the (evidently misconstrued) advice of teachers. Secondly, DJ is a researcher within the Faculty of Oklahoma State who spoke experiences as a neurodiverse researcher working on autism and health services research. A final introduction from Michelle, who is teacher at Beacon College in Florida but has studied all over the world, ended this month’s session.

Beth introduced herself to the network, her infographic about her journey is here for you to access: Beth’s_graphic

 

 

Summary of the second ReASoN meeting (by George)

George’s very ReASoNable diary 27/04/2021
Dear Diary,
I went to my first ReASoN meeting today and this is what happened:

The meeting begins, all is quiet but no more awkward than your typical zoom meeting, going well so far.
Deborah opened with the guiding principles (which are definitely not rules, btw) and they boil down to the following:
1) Respect – have some, and generally don’t be an arse. (Everyone was lovely and seemed not to need this, but good to have it in writing)
2) Don’t dox anyone. (Always good to remind people that, while we are all supportive, being neurodivergent is a private issue for many)
Following this I garbled through an introduction, which I thought was fine, until Sumeiyah did it way more professionally.

Sumeiyah then presented some stats on the network and, to the surprise of no one, most people neurodivergent and either students or researchers:


click here for larger picture of slide

We then moved onto the “reasons for joining ReASoN” and things turned mildly depressing as many of us were driven to join because of some form of ablest practices:


click here for larger picture of slide
The meeting then properly began as Abby explained the breakout rooms and their topics of discussion:

Room 1: student facing research ideas.

Room 2: more focused on neurodivergent staff.

Room 3: how should we be using the network? What do the members want? (At this point I learned that people on the coordinating committee are not going to have any extra power. So much for this being the first step on my quest to form a neurodivergent army and start a revolution!)

First impressions: it looks as if the staff want to join the student room and vice versa, what lovely people we are here. (either that or there are such things as older students and younger staff?)
I took advantage of my position, as the official roaming reporter, to join room 1 just as ‘Member R’ (anonymity makes these notes sound like a spy novel, and it love it!) was chatting intersectionality and the experience of non-typical autistic people. At this point I got very excited because I thought that was me (I’m super loud and love hugs) but then it turns out that she meant autistic people who aren’t white males; turns out I’m not as special as I thought, but this is what ReASoN is for and the discussion is great.

Member E makes an excellent point that we need to include non-NT people in the discussion as all the problems actually turn up from stuff they do. This is why autistic spaces don’t really get awkward, we know mostly know what what we mean, it’s the neurotypicals that confuse us!
Member F becomes by favourite contributor as she prefers to contribute non-verbally, via the chat, and this means I can just copy and paste her thoughts directly: “… I think it would be good to think about the role of personal tutors and lecturers as well, and how their understanding can affect learning/assessments.” (Who’s idea was it to have the dyslexic making notes!?)
Member D then goes rouge by wondering how this links to the role of ReASoN (completely ignoring the breakout room themes!), I can’t get mad though she does make a good point!
Member R mentions Brian Irvine as a possible speaker, and now I need to figure out if that name is covered by the confidentiality of this meeting, hmmmm.
There is more excellent discussion on the role of mentors and how many of the “adjustments” actually seem to be more for the staff than the ND students themselves.
And then I learned that there is a belief that autistic people can’t cook????

Popped over to group to hear approximately 3 sentences that made a really good point about disabling practices and considering yourself disabled before we ran out time. Luckly this is why we have a general summation of these points as a larger group.
Conversations focused on weather, wether, whether ND people consider themselves disabled when it comes to staff members. Many good points are made and, personally, this felt very relevant; I took full advantage of provisions with deadlines etc, as a student, but when I was teaching this year and wasn’t able to make it one week I actually lied about why I couldn’t be there. This is what ReASoN will hopefully be great at: highlighting the different experiences of the community depending on their ‘role.’
Member B made some excellent points about what it is that makes someone disabled. It seems like one of the things that ReASoN might be able to do is give everyone at universities a thorough schooling in the social model of disability.
Member J (who I remember as the guy with a really cool Zoom background) is explained what happened in group 3, with member communication seeming to be the focus. This makes intuitive sense as this is a network.

There was then some good discussion about how we could grow the network before we all had to leave.

The hour-long meeting seemed to fly by and, while there were many great things discussed, one this that we all seemed to feel is that it was just too short! We are currently trying to figure out how we can add a ‘virtual pub trip’ after the meeting ends because there are some really interesting people here and everyone seems to be enjoying each other’s company.
Hurry up next month!

Summary of the talk we had in our first ReASoN meeting

Francesca Happé (also known as Franky) is our speaker today, a well-known academic and researcher whose work focusses on autistic people and autism. She talks to us about mental health and autism.

She talks about post-traumatic stress disorder (PTSD) in autistic people, and how unexpected events, such as the bus taking a detour and dropping you off somewhere else, might be hugely traumatic for an autistic person, but are not considered a “life-threatening” trauma in the current US-based Diagnostic and Statistical Manual of Mental Disorders (the DSM-5). This means that some autistic people may be denied a PSTD diagnosis, and the treatment that should follow.

Franky talks about an online study which recruited autistic adults who had experienced something they found traumatic. They were asked about what they experienced, and they completed a self-report questionnaire about symptoms of PTSD. POf those autistic people who reported a trauma that fits with the DSM-5 criteria (e.g. physical assault or serious accident), almost half (45%) symptoms of PTSD that met clinical cut-off. The numbers with high PTSD symptoms was the same for autistic adults who had experienced events that DSM-5 wouldn’t count as a trauma, but had been traumatic for them (e.g. bullying). Strikingly, these rates of probably PTSD after trauma are much higher than in nonautistic adults; about 9% of the general population who experience a trauma will develop PTSD, compared to 40-50% in this study with autistic adults.

Those autistic adults who had PTSD symptoms had other indicators of poor mental health such as depression and anxiety. A PhD student (Anneka Kumar) did a qualitative study where she explored autistic people’s experience of PTSD by interviewing them. She did an inductive thematic analysis to see what common themes people reported.

Sensory features were a big theme, as were having heightened or flattened emotions. Some people tried to avoid of ‘escape’ from their intrusive trauma memories. There were themes around self-blame, social isolation and lack of social connection (due to the traumatic event). Others said they could not concentrate or work. Some found that music or spending time in nature helped them, and many said that the relationship with a therapist was more important than the specific type of talking therapy.

Franky recommends that asking about trauma exposure and screening for PTSD should be included in services for autistic people, and suggests that evidence-based interventions could be developed and implemented.

Franky then suggested a few different reasons that might explain high rates of mental health difficulties in autistic people. She mentioned possible genetic links, as well as life-experiences (e.g., stigma, prejudice), as well as aspects of psychological style (e.g., detail focus). She goes on to talk about camouflaging or masking of autistic behaviours, which some autistic people do to “pass as neurotypical” and avoid negative attention. Someone gave an example of how they modelled their behaviour based on someone they saw who they perceived as cool.

Autistic people report that masking is exhausting and impacts their sense of self. The feeling is that, on average, autistic females may be more likely to mask than men, although men also mask sometimes. Lucy Livingston did some work on this and about people feeling like they are not their “authentic self” because they spend so much time camouflaging or masking their true selves.

There is a questionnaire about the Camouflaging of autistic traits (CAT-Q) – it measures your attempt to camouflage rather than necessarily your success!
Both males and females report that they camouflage traits. Those who report more camouflaging report a poorer quality of life. It may also mean a later diagnosis because they mask during the process of diagnosis (although we don’t have data on this yet).

Is autism under-recognised in females? Franky says there used to be a 5 or 10 to 1 ratio of males to females, but newer data reviewed by Loomes et al 2017, suggest it is more like 3:1, so three times as many men aswomen meet criteria for an autism diagnosis. It used to be thought that autistic women were more likely than autistic men to have intellectual disability, but epidemiological studies don’t seem to support that. It may be that it was easier to pick up autism in women and girls with intellectual disability, and that women and girls without these additional impairments were missed (because of masking?).
Why might we be missing autistic females, she wonders? People think of autism when they see a boy struggling socially, but if this is a girl they might assume this is social anxiety. Some autistic girls might be socially clingy or have an intense interest that is socially acceptable, like an interest in horses or actors – so they don’t meet the (male) stereotype of autism.

In a study that is in progress at the moment, the age of diagnosis of autism was later for females than males. Later diagnoses were associated with worse quality of life for males and females. Higher IQ was associated with later diagnosis for females (not males). More camouflaging was also related to later age at diagnosis in females but not males.

Franky says thank you for listening. She then answered some questions from network members.

Questions
Is there any research on adapting CBT or DBT for autistic people?
Franky says her colleague Dr Debbie Spain has developed CBT for social anxiety for autistic people. EMDR (eye movement desensitisation reprogramming) is a treatment for PTSD that might hold promise for autistic people. It doesn’t involve a lot of talking about your emotions. Randomised trials suggest this works well.

Gender disparity in experiencing trauma? More females than males reported a trauma that met DSM-5 criteria, but more males than females reported a trauma that didn’t meet those narrow criteria. Franky said that females reported more sexual abuse than did males, and this fits the DSM-5 criteria for trauma.

Does masking protect or erode your sense of identity? This probably depends on why someone is masking. If it is because you’ve been bullied, and masking makes you feel unauthentic, it’s probably not good for your mental health. Some late diagnosed autistic people talk about ‘finding their tribe’ – a group of other autistic people with whom they can be themselves. On the other hand, Wenn Lawson has written recently about masking as a survival strategy (written comment).

Felling different and not socially accepted is common in ADHD too, one person says. Franky says she sees lots of parallels between what she has talked about for autism and ADHD, including fewer women being diagnosed. She has seen a magazine article about late diagnosed ADHD, wherenot feeling your ‘authentic self’ was also a theme. Franky thinks parallels with ADHD are really important, and not having a good attribution for struggles you experience must be undermining (rather than knowing that you have ADHD or are autistic). Early diagnosis can be helpful in building up self-esteem in understanding you are different but not deficient.

We move on to talking about what people’s ideas and priorities are for research and we’ll talk about this more at the next meeting.