Jun 2024 - Autism@Manchester

HEADLINE INTERVIEW: DR KETAN PARMAR’S RESEARCH WITHIN OPTOMETRY AND AUTISM

RESEARCH ACROSS THE SEAS: INTERVIEW WITH ABHIPREET KAUR

GUEST ARTICLE NEURODIVERGENT ACTIVISM IN RUSSIA: AN INSIDE PERSPECTIVE

June 2024

Autism @Manchester

Autism @Manchester

COVER PHOTO: DIVERSIFYLENS The editor would like to credit and celebrate Canva portfolio, Diversifylens, for offering freely-available photos representing a diverse range of individuals. The cover photo is by Merrysky on Diversifylens.

Above photos by Jayden Becker, Eunice Pais, and Vaneesha by #DepthofV for Diversifylens.

Diversifylens’ portfolio can be viewed: https://www.canva.com/p/diversifylens/? utm_medium=referral&utm_source=creator_share&utm_campaign=creator_share

WORDS FROM THE EDITOR: THE RESEARCH WORLD IS WIDE ENOUGH FOR ALL OF US I am glad that Autism@Manchester is one of the first organisations to outwardly advertise for such roles.

Still, after all, it should soon become standard practice for all research to adopt the ‘Nothing About Us Without Us’ mentality.

Well, what a ride this year has been! From my first time getting involved with the Autism@Manchester (A@M) Expert-byExperience group as an ‘Expert’ to getting the group feedback on a toolkit that I have been working on with A@M, my time with Emma and her colleagues (notably, Alex, Kathy and Katie) has been invaluable for my personal growth and career. I hope they feel the same about working alongside me!

Whilst Autism@Manchester has been doing good work within Autism research for years, I am so privileged to hold the title of its first ‘coproduction officer’. In the last issue’s “words from the editor” section, I commented that “I truly hope we have more co-production roles in the future”, and lo and behold, as this issue is published, Emma and her colleagues have successfully secured a University of Manchester Research Institute (UMRI) grant to hire a full-time CoProduction Officer beginning Fall 2024. It is incredible that this is happening. Not only will this allow Autism@Manchester to continue to craft the toolkit they started working on with me, but a full-time officer will also mean that there is even more room to get creative about ways to connect with external stakeholders.

Secondly, I think that positions involving Autistic people in Autism research are so important because they are currently a novelty—but they shouldn’t be.

Equally, we need to begin to think about further diversifying Autism research. This year, more than any other year, I was granted multiple opportunities to attend Autism and Autism-adjacent events, and I realised that not only do we need more Autistic people in Autism research, but we also need more diverse representations of Autistic people in Autism research. Conversations about Autism are still dominated by low support needs, White middleclass people. Of course, no Autistic representation is necessarily ‘unwanted’; I simply think we need a much more diverse range of Autistic humans talking about their differential lived experiences. High support needs Autistic people, BAME Autistic people, Autistic people with complex needs - we need to hear them, we need to see them.

Now, the last time I wrote about wanting more coproduction roles, it appears that typing it down does manifest things to happen. Thus, for this issue, I want to spotlight Autism research and advocacy that look at Autism through different lenses (pun intended). Perhaps some of the research and people in this magazine issue will inspire you to see Autism in an even more multifaceted way.

The time has now come for me to bid farewell to Autism@Manchester (and, thus also, to this magazine). I want to take this opportunity to massively thank Dr Emma Gowen and her team for allowing me to take up this role as a little undergraduate student. A massive appreciation is also due to my parents for their unwavering support.

And to you (that’s the readers of this magazine/newsletter), your interaction with our materials has really made this journey worthwhile.

DR KETAN PARMAR’S RESEARCH IN OPTOMETRY AND AUTISM In an exclusive interview with lecturer and researcher Dr Ketan Parmar, our co-production officer, Jaja, asks for Dr Ketan’s candid opinion about the joy and turbulence of conducting research. They discuss the importance of work-life balance, and the importance of meaningful Autism research, particularly in the field of Optometry.

J: For those who do not know you, could you please introduce yourself?

K: My name is Dr Ketan Parmar, and I'm a lecturer in Postgraduate Optometry at the University of Manchester.

A bit about my background - I'm an optometrist by profession, and I actually did my undergraduate degree here, and then I went straight into my PhD back-to-back.

Once I finished my PhD, I started a research position at Eurolens Contact Lens Research, and about a year ago, I came into my current role.

I'm a Regional Coordinator and that's quite a fulfilling role for me because my duties tie in with my spirituality and my faith.

It allows me to have a balanced lifestyle. A fun fact about me - the only one that I think of is that when I was born, I was not called Ketan. My parents gave me a temporary name, which was “Zac”, which no one would have guessed! *both laughs* J: Who would have thought?

J: What other things would be interesting for readers to know about you?

K: Apparently, they named me that because they used to have a budgie called “Zac”.

K: Well, I have quite a varied lifestyle; for those people who do know me, they know that I get up to lots of different things, and I have hardly any free time. I do really enjoy socializing, and that's with either work colleagues or my friends in the various activities that I'm part of. That's something that I really enjoy doing, just meeting with people for a chat and food. In terms of hobbies, I like ‘arts and crafts’, I find it therapeutic. I think that's important when you've got so much going on.

J: That’s so interesting. I, too, really enjoy ‘arts and crafts’ as well. As you said, I think it’s very therapeutic. Thank you again for allowing me to do this interview. Let’s start with a fun question: if you could meet one person, dead or alive, who would it be and why?

Also, I'm part of “Sri Sathya Sai Organisation UK” a service organization outside of my work.

K: I don't know if this fits either of those categories, but with my spirituality and faith, if I could sit face-to-face with someone and have a conversation, it would be God. This is because I have so many interests and questions about religion and what's happening in the world.

J: That’s a perfectly fair answer. So, could you tell us a little more about the theme or themes of your research? You can also highlight specific pieces if you would like to.

K: I think I'll talk about my PhD work because what I'm doing at the moment is a continuation of that. So, my PhD was about Autism, vision and eye examination accessibility, broadly speaking.

I looked into the visual sensory experiences of Autistic adults and the impacts they have on how Autistic people live their day-to-day lives. Before my research, that [topic] was really poorly documented; it was all kind of guesswork from the literature, and there's a lot of focus only on children.

Then, the next thing that I looked into was eye conditions in Autistic adults. Now, unfortunately, it all happened when COVID hit as well, but what I was basically doing were eye exams with Autistic adults and seeing what types of eye conditions were generally coming out. Then, I also treated them and saw how successfully we could treat these eye conditions and the impact of treatment on visual experiences.

Then, the final piece that I looked at, which kind of brought everything together - my interviews, my eye exams, my focus groups - was about eye exam accessibility for Autistic people and how it can be improved. From this, I produced resources and guidance for eyecare providers.

So that was my PhD work, and what I'm trying to now look into is a continuation of that. It is about recognising that autistic people may be more likely to have certain eye conditions and find it difficult to access eye examinations because of accessibility issues; how would it help to introduce a specialised eye care pathway for autistic adults? I talked about this a couple of weeks ago [at the Expert-by-Experience group], you might remember. This next step in my research is bringing everything that I've learned together and seeing if we can make something useful out of it.

Another small area that I've started to look up is something called “visual stress”. With colleagues from different disciplines, I’m piloting if we could use MRI scanning to investigate if coloured lenses or coloured filters do which they have been hypothesized to do. I'm doing little pilot studies with it with a team of my colleagues.

J: That’s really cool because I have seen a lot of these coloured lenses in the market recently, they are everywhere.

K: What have you seen them for?

J: A lot of them claim to help with blue light from screen use, others are, as you said, supposed to reduce visual stress generally.

K: One of the key reasons that I want to look into it is because there is lots of literature about filters and the impacts they have, but the actual scientific mechanism of how they work and what they do to the brain activity hasn't been looked into for visual stress, and that's what we're trying to get out here. It's really important to find things out the scientific basis for any treatment to stop harmful marketing, to stop people saying, “oh if you wear these specs then your visual symptoms will be cured!” or something like that. We want to make sure that everything's evidence-based and not have people led down the wrong route, ensuring people are not spending money where they don't need to.

J: True, and I guess, this leads really nicely to our next question about what were the best bits about doing and completing research?

K: To cast all doubt to the side, I'd like to first say that research isn't an easy process. It requires a lot of selfmotivation and self-direction. It's very easy to go off on different paths and down rabbit holes, but you have to keep at the primary goal. For me, out of all the research that I've done, which has a clinical impact and a visible impact on day-to-day living of Autistic people is most satisfying.

It has a meaning for them, you know, it puts down in words what they are experiencing so non-autistic people can understand what Autistic people can experience. It also can help clinicians like me, in practice, provide a better service for Autistic people. This is the reason why I did this project. I'm carrying on in this field because I like combining my holistic clinical understanding with this research and just seeing how it all works together.

J: I have also realised, through my role at Autism@Manchester, that research takes a long time and that you have to stay committed. What do you think were the most challenging bits of research?

As you mentioned, there is obviously the amount of time and effort you have to dedicate to the projects, but were there any other challenges that you personally found?

K: Research requires funding. I think that's one of the biggest challenges for research progression. You have your motivation to research a particular area, but a big roadblock is getting money to do that, and it's really difficult. It's not an easy process of writing a short application and just sending it in and getting money the next day. Not at all. It really takes its toll on you having to justify your point, make it clear to that person [looking at your research] who has no knowledge about what you're talking about and highlight the importance of what you're doing.

Now, of course, I'm biased about what I'm doing, and you'd be biased about what you're doing, and someone in cancer research, medical research or pharmacy research will all be biased about their research. We all think what we do is important, so just accepting that, understanding that, is really difficult.

If you're a really highly motivated person, you keep it all going at the same pace, but then there do come times when you run out of energy, and you really start to question, “Do I want to do this? I can’t carry on. I can’t do this.” *both laugh*.

You do go through peaks and troughs with research, so I think a major challenge, or more or less a major ‘skill’ that you need, is consistent motivation.

J: That's fair. That’s good advice.

For the Autistic community, what do you think is the most crucial part that has come out of your research?

It’s difficult, I think all three parts are really important.

The first paper that I published was about visual sensory experiences, and that was really popular and well-received

by Autistic people, especially those with an online presence. When I was looking at the statistics about that, I think it’s because the research documented something which hadn't been previously done, and many Autistic people said, “this is exactly what I experienced”. So, from a qualitative, subjective Autistic persons’ closure point-ofview, that paper was really important.

The research on eye exam accessibility and results resources are important from an eyecare provider’s point of view. This could lead to the development of protocols and policies to facilitate eye health for Autistic people.

The final one, which did turn out to be a pilot introductory study was the eye examination work. This is important because it gives eyecare providers some direction about what they should look out for when testing an Autistic person’s eyes.

I remember going to a talk recently about research and it was quite surprising to find that, I think, they said about 90% of research grant applications get rejected - which is a huge amount! That really challenges your mindset about how much energy you're putting into this, how much motivation you're putting in, and what is going to be the the outcome. You just have to keep going to progress with the research. So, I think that's one challenge.

Does that answer your question?

Another challenge I faced during my PhD was maintaining motivation. There is a big difference between doing research on your own and in a team. Of course, doing it on your own can be really difficult, as you're in charge of everything.

K: Yes, I think, that’s really reassuring. Thank you

J: Yes, it does.

J: I think it’s also really important that your area of research is looking at an area which has almost been ‘underserved’ within the field of Autism research. That in itself is really important.

J: Yes, well, so my next question, perhaps, is, what are your hopes for future Autism research?

K: For Autism, I would really like to see my work about the eye examination pathway taking off and hopefully getting some direction about what we can provide Autistic people with so that they can better manage their own eye health.

Next is some training or a course for eye care providers so they can provide autism-informed eye care.

J: Is there anything else you would like to shout out or mention?

K: I want to really highlight that I think the Autism@Manchester network at Manchester is very unique. I found this to be really helpful during my research.

I still remember that first presentation I did at the Expertby-Experience Group, everybody was so friendly and kind and they really guided me as to what I should think about and what I maybe actually steer away from, because I was so naive to everything.

K: Also, I've been getting continuing support with research, so I think at Manchester, we are really blessed if I can say to have such a network of individuals who have lived experience that can advise researchers to deliver useful and informed research. I think that's something that I really wanted to mention.

J: That’s great, Emma (Chair of Autism@Manchester) will be so pleased to hear that!

Also, I think the network wouldn't be what it is if it's not for all the contributors like you, so yeah, thank you, as well. I think that's an amazing way to end our interview. Thank you for your time.

K: Thank you for the opportunity.

With thanks to Dr Ketan Parmar for his time.

Photos 1 & 2 provided by Dr Ketan Parmar, Photo 3 by Jaja Choktanasiri

RESOURCE REVIEW: OLDHAM LIBRARY SENSORY ROOM In an attempt to find accessible ‘sensory retreat’ resources, last summer, I stumbled across the Oldham Library Sensory Room. Set just tram stops away from the main University of Manchester Main Library, a friend, and I made the trip to check it out.

To use the Sensory Room, one must book 30minute slots (only £3!) via the Library’s website (https://hla.oldham.gov.uk/whats-on/sensoryroom/) and then be inducted into the different specialist equipment in the room.

For only £3 entry fee for up to 6 people, the Oldham Library Sensory Room is one of the most well-equipped sensory rooms I have had the privilege of seeing and using.

It is fitted with multiple soft pads, a bubble tube, 2 LED interactive light walls, proprioceptive peanut balls, and fibre optics.

For the price and location, I am incredibly impressed that this is a facility made available by the Oldham Council. It is refreshing to see accessible sensory resources for individuals with varying needs. From large colourful buttons which are mobile (can be used for those sitting on the floor or in a chair), to the customisable light setting of the room and the friendly staff, I could not recommend this facility enough for those in Manchester and its vicinities.

Photos by Jaja Choktanasiri

Although these resources are particularly important for those who are autistic or have additional sensory needs, I can see this resource being particularly helpful for stressed students or individuals simply needing to decompress. Actually, the more of these resources we have, the more people can live better, fuller lives - not just those who are autistic.

RESEARCH ACROSS THE SEAS: INTERVIEW WITH ABHIPREET KAUR Thanks to the pandemic, we have all become more proficient than ever at utilising video calls. In a crosstimezone interview, Jaja, A@M co-production officer, speaks to Abhipreet Kaur about her published research about Autistic children in India and her current remote research with her team at the University of Manchester.

J: Okay, so for those who do not know you, could you please introduce yourselves, perhaps also your educational background, your interests, and maybe how you got involved with Autism@Manchester?

A: Yes, I’m excited to take this opportunity to introduce myself. My name is Abhipreet Kaur, and my pronouns are she/her. I was born and raised in India, and I have undergraduate and postgraduate degrees in Psychology from esteemed universities in my homeland, India.

Currently, I'm pursuing my PhD in Clinical Psychology at the University of Manchester and, in tandem with my academic pursuit, I work as a programme coordinator at “Sangath” which is a not-for-profit organisation in India.

For the past four and a half years, I have been actively involved in Autism research through the collaborative efforts of Sangath and the University of Manchester.

J: Perfect, so before we get to the more technical side of this interview, I want to ask: if you could meet one person, dead or alive, who would it be and why?

A: Hmm, if I could meet one famous person, dead or alive, it would probably be Bhagat Puran Singh, who was a philanthropist and had dedicated his life to humanitarian work. I truly admire the work Bhagat Puran Singh has done and also the profound impact that his work has had on my family.

From the age of 18, my father has been involved with Bhagat Puran Singh’s initiative, and I recall when I was young, he would also take me to organisations that supported individuals with special needs. I used to ask my father, “why are they different from me?” and my father would respond by saying that “They are different because God had made them special”. Those early experiences planted a seed of curiosity and empathy within me, igniting my passion for supporting individuals with different abilities.

The experiences I have had during my childhood and also in my adult life; all of this serve as a constant reminder of the transformative power of compassion and the profound impact one can have on the lives of individuals.

Meeting him (Bhagat Puran Singh) and learning from his wisdom and experience as a person would be an honour!

J: That is such a moving answer; thank you for sharing that with me. Now, a little bit about your research and your work - could you please tell me about the different themes of your research?

A: The paper that I have recently published, in collaboration with my seniors and peers, within Sangath and the University of Manchester, looks at the experiences of families of young children with Autism during the COVID-19 pandemic and its subsequent lockdowns. This qualitative study specifically focused on the experiences of 14 families who were residing in New Delhi, which is in North India.

There were three emerging themes.

The first was the universal impact pandemic and its associated lockdowns on family life. It summarised the struggles of the families (participants) in balancing their lives and livelihood amidst the pandemic and its lockdown.

The findings reveal that the financial challenges were paramount, with many families experiencing loss of livelihood - there were salary deductions and unemployment of family members. To navigate financial challenges, families responded in various ways, such as dipping into their savings, ultimately depleting them due to the extended periods of lockdown, seeking financial support, drastically reducing expenses to the bare minimum, cutting back on food consumption, and either stopping or reducing the frequency of services such as therapy or education for their children."

Then, the second theme focused on the impact of the pandemic on families with children with autism, shedding light on the unique challenges they faced. It underscored how the pandemic brought about changes in the behaviour of these children. Some parents reported positive changes ranging from improvement in communication, social skills and also motor skills.

Conversely, parents also reported an increase in challenging behaviours; due to disruption in their routines.

Most didn’t have access to essential services for their children, such as hospitals or NGOs that they were visiting for therapies. This was due to tertiary care hospitals being converted into COVID-19 facilities to combat the pandemic, leaving families without any access to essential services.

The final theme of this study explored the universal impact on caregivers, particularly focusing on the emotional and practical challenges they experienced during the pandemic. With the majority of participants being mothers, there was a noticeable increase in domestic workload as mothers shouldered all the household chores.

Additionally, they supported their children with online classes, and at the same time, given that the families did not have access to therapies, mothers were also acting as therapists. They were implementing the learnings from their therapy sessions with the child(ren) with Autism.

While looking at the emotional aspects of the pandemic, many families, especially mothers, reported being stressed due to financial problems, family dynamics, inability to provide essential services to their child with autism and also due to uncertainty about their child’s future.

Additionally, feelings of helplessness were also prevalent.

However, despite these struggles, families expressed gratitude for having their family members together during such difficult times.

J: Interesting, that’s refreshing to hear. You’re also a PhD student currently. Would you like to tell me a little bit about the topic of your PhD and maybe your inspiration behind it?

A: Yes, so my PhD is actually embedded in a program called “NAMASTE,” which aims to design and implement detection-care for young children with neurodevelopmental disabilities.

Within NAMASTE, we are training lay health workers to detect children with neurodevelopmental disabilities within communities in India, Nepal & Sri Lanka and provide relevant interventions.

My PhD research focuses on evaluating this detection pathway. By exploring the experiences of these health workers as they engage in community-based detection of children with NDDs, as well as the experiences of the families involved, I aim to gauge the acceptability and feasibility of this model.

Additionally, I'll gather perspectives from relevant key stakeholders. The ultimate goal is to provide policy recommendations for integrating such a model into existing health systems J: You’ve been part of research quite a bit. What do you think are the best bits of research?

A: Okay, so the first thing that was quite rewarding about this research was that it provided valuable insights into the real-world experiences of these families during the pandemic and its associated lockdowns, offering readers and researchers a firsthand understanding of their lived realities. Immersing ourselves in the stories of these families fostered empathy and deepened our understanding of their struggles and challenges.

At the same time, by shedding light on the difficulties faced by those 14 families who participated in this research, I think it cultivated a sense of compassion for all the other families who were not directly involved in this research.

Also, the practical implications of the research findings remain significant for policymakers and researchers, even though the pandemic has ended. The insights gleaned from this research study can serve as valuable lessons to prepare and support policymakers and researchers in

addressing the unique needs of families of children with autism in any unforeseen future crisis or challenges.

J: Yeah, I appreciate that. It must be a good feeling to know that what you’re doing is having a realworld impact. How about, on the other hand, what were the challenging components to research for you?

A: First was a bit of a practical challenge - given that the majority of the participants were mothers and they were shouldering everything that had to be done within the households, at times, it was very difficult to schedule the telephonic interviews. Their busy schedules made it challenging for them to allocate sufficient time for interviews. To accommodate their availability, we sometimes divided interviews over two days. Additionally, many mothers had to adhere to a new routine for their children, with specific activities scheduled at certain times.

To ensure minimal disruption, we often conducted interviews in the late evenings when the children were settled. Another challenge we encountered was managing the emotional impact of the participants' stories. While listening to their experiences, feelings of empathy and compassion arose, but at times, it also elicited some distress.

J: That’s perfect. I guess my next question would be, what are your hopes for future Autism research?

A: I just talked about the research that we recently published on the experiences of families of children with autism during the COVID-19 pandemic; I think it holds significant potential to inform targeted interventions and support services tailored to the unique needs of children with Autism and their families, particularly during times of crisis and uncertainty. While the COVID-19 lockdowns have ended, the insights gleaned from this research offer enduring lessons for key policymakers. By identifying specific challenges faced by families, policymakers can gain actionable insights to improve support services and implement comprehensive interventions to address immediate crises.

Moreover, our research sheds light on systemic issues within existing support systems. It amplifies the voices of the Autism community. Moving forward, it's imperative that existing support systems foster a supportive environment that acknowledges and accommodates the diverse needs of the Autistic community. This ongoing effort toward inclusivity and support is essential for creating meaningful change.

J: Yeah, I guess that's a common theme amongst my interviews; the kind of things that people want to see in research is more listening to autistic lived experiences, isn't it?

A: Right.

J: Perfect, about your PhD, if you could give one piece of advice to anyone starting their PhD, what would it be?

A: Doing a PhD can be quite taxing, so I think it's crucial to choose a PhD topic that you are passionate about. This passion will not only drive you to complete your PhD but will also ensure that you excel in your research and find fulfilment in the process.

J: The perfect short and sweet answer. Lastly, is there anyone or anything you would like to shout out or mention?

A: I look back, I have been doing Autism research for 4 and a half years now, and I owe a lot to the people who have believed in me and have pushed me forward., So I would like to shout out to all my amazing mentors within “Sangath” and the University of Manchester, who have been such great role models and a source of inspiration. Without their kind support, I wouldn’t be where I am today.

J: Perfect, that's such a sweet and all-encompassing answer. Thank you so much for your time.

A: Thank you so much again.

With thanks to Abhipreet Kaur and her time Photos provided by Abhipreet Kaur

CONGRATULATIONS to Dr Emma Gowen and her team for securing a University of Manchester research grant to hire a full-time Co-production Officer beginning August 2024!

Keep your eyes peeled for their introduction through our social media channels.

Instagram: @autismatmcr (https://www.instagram.com/autismatmanchester/) Twitter/X: AutismAtMCR (https://x.com/AutismAtMCR) Facebook: Autism at Manchester (https://web.facebook.com/autismatmanchester) LinkedIn: Autism@Manchester (https://uk.linkedin.com/company/autismatmanchester) If none of these channels works for you, please email emma.gowen@manchester.ac.uk about how best we can keep you in the Autism@Manchester news loop.

NEURODIVERGENT ACTIVISM IN RUSSIA: AN INSIDE PERSPECTIVE Advocacy can look very different depending on where we live or where we identify as ‘home’. This article, written by Elizaveta Nosova (with contributions from Yuri Kaan and Erika Grechka), explores the online Autism community in Russia “Neuroset” - https://t.me/neurosetneu. With thanks to artwork by Erika Grechka who can be found on Tumblr: https://www.tumblr.com/grechkathekasha

My name is Elizaveta, and I am an autistic autism researcher in the first year of getting my PhD at the University of Manchester. I am also Russian.

I volunteer in a small online community of like-minded Russian-speaking people, titled “Neuroset’”, literally translated as the “neural network”. In Telegram (a popular messenger among Russian speakers), we have a channel with over 5500 subscribers. We translate and write texts, organise events, create art and even help people find neurodivergent-friendly counselling. My colleagues and I would like to tell you more about our volunteering. The aim of Neuroset, as expressed in our manifesto, is twofold: First, we educate people around us. The neurodiversity paradigm is mostly unknown in Russia and when we discuss different neurodivergent conditions, common myths and stigma through its lenses, we learn and help others to learn.

Second, we form and support the neurodivergent community, striving to create opportunities for connection and mutual support.

About Russia. To understand neurodivergent activism in Russia, it is crucial to know about the reality that all Russian people live in.

Free speech and human rights are something that’s been unheard of in Russia for many years. LGBTQI+ people face unparalleled amounts of legal discrimination, with all queer activism being recognized as “extremist”. This is important to mention as many people in our audience are LGBTQI+.

Neurodivergent people are not supported either: the diagnosis of autism is almost completely impossible to receive after the age of 18 (sometimes even 14). Many psychiatric diagnoses cause people to lose their rights (such as the right to work at certain jobs). Neurodivergent adults have almost zero support of any kind. For these reasons, many neurodivergent Russians are undiagnosed, and we take this into account when doing our work.

With that being said, we also can’t speak up about the injustices that the government commits towards its people: if we do, the situation for the members of our team who still live in Russia will become unsafe.

While we can’t be as open in our work as we’d like, it’s still extremely helpful. As long as we keep seeing neurodivergent people benefiting from our activism — feeling supported, finding resources, gaining a community and getting to know themselves — we know that it’s all worth it.

About us. Currently, there are 30 people in our team, from 17 to 30 years old, and almost all of us live in Russia. Many of us are queer and not all of us are white. We do many things: We write articles and blogs about different neurodivergent conditions, using the sources we trust We create comics, short posts and illustrations We translate and adapt the texts that we find useful, including journal articles and community materials We conduct events, both offline and online, to boost the community spirit. Among the events we organise are meet-ups, creator's markets, support groups and other community-building activities We run and moderate online chats for neurodivergent people We help neurodivergent people to get psychological counselling for free - we have several counsellors who provide up to 3 meetings per person on a volunteer basis. 189 people have received free consultations this year alone.

Most of our activities are either free or require a small donation that we use for the needs of the organisation.

All of our team members are volunteers.

Personal experiences of our team members Elizaveta Nosova: From my experience, speaking about neurodiversity in a space where people might not know about neurodiversity can be eyeopening for both our audience and ourselves. I believe it is crucial to give people access to accurate and recent information. While we are actively involved in the neurodivergent community, we also aim to give our readers access to research.

This is especially relevant for me, as a researcher. It is very difficult to find non-stigmatising information about neurodivergent conditions in Russia, and often those who seek it have to choose between outdated and stigmatised sources and life experiences from social media.

However, when we bring research into the picture, we can learn to be more critical of the information we receive and choose sources we trust. Those critical reading skills, once acquired, can be incredibly useful when navigating yourself through the immense amount of experiences and advice of others.

What is more, research can validate your perspective. When in your country you are not able to be recognised and supported, let alone celebrated, it helps to know that these things, ideas and concepts are not just something made up by you and other young people - they are in the research and practice elsewhere. It gives you hope.

Elizaveta Nosova (continued): In “Neuroset,” we translate research papers, write about them, and use them as our sources. I am leading a monthly reading group where we discuss recent research papers from the neurodiversity perspective. In this reading group, every month, I give short fifteen- to thirty-minute talks. Some of the recent topics included foundations of critical reading, a social model of disability, inclusion and universal design, and quality in the research. I enjoy doing what I am doing, and when I share recent papers, I feel like I am giving something incredibly valuable to my community.

Erika Grechka: Neurodiversity is my autistic special interest, and I'm very glad to have the opportunity to be a part of such a project as Neuroset, where I work with an incredible, diverse team of people I feel safe with.

I'm one of the illustrators volunteering in “Neuroset,” creating visuals for our posts, as well as sharing my own original content.

In the future, I'm hoping to learn the required skills for organising regular informal community-building meetings of neurodivergent people as well.

As an artist, I see the world through my artistic observations.

Because neurodivergency and queerness are two very big parts of my own inner world and identity, I know what it feels like to be alienated, misunderstood by the society I live in, and even myself. I want to help my community feel seen, understood and celebrated by sharing experiences and information in the form of art. "You are not alone". This message has a lot more impact and meaning to it than some may think. And everything in the process of spreading that message, both valuable and motivational to me.

Yuri Kaan: I am one of Neuroset’s organisers: I develop our content plan, take part in writing and editing posts, articles and translations, help new volunteers adjust to their roles and coordinate the work of our team in many other ways. I started off as a writer after being invited to “Neuroset” several years ago, and since then I had the pleasure of seeing our project grow into what it is today. It’s not perfect, but we’re always trying our best, and I can see the positive impact our work has had on the community.

I’ve been an activist for many years now, not only in the issues of neurodiversity but also queerness. People have asked me many times: “Why do you do it?”

The answer is: not doing this work is unimaginable to me. I’m not unaware — I know how much danger I put myself in by doing this (the LGBTQ+ activism specifically), but I can’t stop. Speaking up about what I believe in, spreading accurate information and helping my communities are my ways of gaining agency in a situation where the state has tried for years to take it from me. I refuse to let them win.

And while the situation for my people is far from good, I know that over time it will get better. As we continue our work, society will become more and more aware, more willing to see us and listen. Darkness can’t last forever, and I know that we will soon see the light. This isn’t an idle hope — it’s a promise.

MEET AN

EC R

EARLY CAREER RESEARCHER

I'm Adam Finlay, a Physiotherapist at Stockport NHS Foundation Trust.

I specialise in persistent pain and lead a six-week programme for people with Fibromyalgia.

I have started a Research Internship at the University of Manchester within the Division of Medical Education to review the literature on the relationship between Fibromyalgia and Autism. The review, which I aim to complete by November 2024, is the first step toward a research study to investigate this relationship further.

Fibromyalgia is a condition that causes persistent widespread pain and fatigue, and its causes are still unknown. Over the past 8 years, I have observed similarities between Fibromyalgia and Autism/Neurodiversity, such as hypersensitivities and communication barriers. Moreover, my patients with Fibromyalgia often have a child who has been diagnosed with Autism and/or ADHD. It is reported that among the people diagnosed with Fibromyalgia, there is a 3:1 ratio of females to males. Interestingly, it also reported that often Autistic women and girls do not get a diagnosis until later in life due to diagnostic criteria being based on men and boys. A recent study found that a population of people with autism were more likely to have Central Sensitivity Syndromes (such as Fibromyalgia) compared to a control group.

Based on my experience and the information stated above, I have become interested in how many people with Fibromyalgia may have Autism or ADHD but have never been diagnosed. I am interested to see if there is a relationship between Fibromyalgia and Autism/Neurodiversity, and if so, whether being neurodivergent can be a risk factor for developing Fibromyalgia.

If you would like to collaborate with Adam or have opportunities for which he would be a good fit, please email: adamfinlay1993@gmail.com

FOR MORE INFORMATION ABOUT AUTISM@MANCHESTER, autism.manchester.ac.uk