Today, Neurodiversity News has interviewed Kieran Rose, who is the founder of The Autistic Cooperative and a blogger with his site, The Autistic Advocate.
Neurodiversity News: Tell me about yourself and what you do.
Kieran Rose: I do a lot of different things so sometimes it is hard to keep track, it is also the bit I like talking about the least.
My background is in Education and particularly working with children who have additional needs (or those who do not fit into the square hole of mainstream education, as I like to put it).
But I guess firstly, I am a writer with a focus on Autism; I am fortunate to have been published both academically and, in the mainstream, as well as writing on my own blog. I am not sure if I classify as a blogger though, because most of my articles are over 5000 words long – some are thesis length!
On top of that, I work as a private consultant to various organizations all over the world. They all work with Autistic people in various ways and the work I do is to help improve their understanding of Autistic people, modernize their thinking, advise them in improving their services (especially those who provide care services) and reframe the messages they put out publicly.
I am a public speaker who has spoken at events across the globe; and I deliver my own Autism
training, which is very much focused on reframing the narratives around Autistic people, confronting people’s confirmation bias and challenging professional understanding of Autism, neurodiversity and other neurodivergencies. At its heart, I truly believe that Autism is as much a culture as it is a neurological difference. I find introducing professionals to that concept is a useful way of helping them recognize the dangers of pathologizing and how easily Autistic people can be stigmatized and othered because of it.
Lastly, I am co-producing research in Autistic masking and identity with my Academic partner, Dr. Amy Pearson, which is the culmination of years of work and personal experience. I think it is fair to say that Autistic masking, identity, Autistic burnout and culture have become the star around which all my work orbits. I strongly believe it’s at the heart of everything.
Aside from all of that, I am a father to three wonderful neurodivergent children, two of whom are Autistic.
NN: What inspired you to become an advocate?
KR: I was diagnosed by Simon Baron-Cohen in 2003 at the age of 23. Initially, I felt validated that there was a label, Asperger’s, that described my negative experiences, the barriers that I hit growing up, my poor mental health and so on. But ultimately, for me the diagnosis raised more questions than it answered. I needed more information, but everything out there in terms of support and education was aimed at and about children. Temple Grandin appeared to be the only Autistic adult in the world, and I did not find her relatable at all.
I began to realize that the label, as described did not really fit me and I barely related to it. What I read in books didn’t describe me, or at least not to any depth. The internet was young, and I was not tech savvy or aware enough that Autistic people were connecting over it. Everything I had access to was all so superficial. I was angry and it gave me more reasons to feel badly about myself and blame myself.
So, I ended up just shelving my diagnosis and carried on as if I had not gotten it. I continued through cycles of poor mental health, burnout, near constant suicidal ideation, floundering in employment; and continuously and effectively blaming myself for being broken and wrong.
Years later, when my first child was born, I realized straight away, intuitively, that he was just like me and that there was no way I could be the father he needed me to be, if I did not understand myself. So, I was spurred on to self-explore and find the information I’d previously been denied. I devoured every book I could, I poured over charity websites hoping to find anything useful, anything recognizable. Every internet search left me feeling sick.
Eventually I joined Facebook. Initially, I only found groups filled with desperate parents, regurgitating the same awfulness I’d read about.
Then I found groups ran by Autistic people and my whole world changed. I discovered there were already names for concepts which I’d thought up independently, I found people I related to, whose experiences were reflective of my own. I found people who thought like me, whose inner workings were like mine. Whose love of words but struggles with the spoken word were relatable to my own. Who, like me, spent a lifetime marginalized, bullied, excluded and exhausted and unable to be their authentic selves.
I felt validated and accepted for the first time in my life. These people did not make me feel wrong, in fact I got less wrong with them than I did with non-Autistic people.
This all inspired a passion in me to make things different. Big or small, it did not matter; as long as it was sustainable and meant that somebody, somewhere would not have to experience what I did. I did not care about being known for it. I still feel like this now.
NN: You started Infinite Autism not too long ago. How’s that coming along?
KR: Infinite Autism is a social enterprise, which means that it is not-for-profit and accesses funding to support Autistic people, primarily in the local area of where I live, which is the North-East of England.
Interestingly, its purpose has changed dramatically over its short existence. Accessing funding can be challenging and then delivering whatever that funding requires can be logistically hard and time-consuming. It meant that a lot of spoons would have been going into running a not-for-profit company, without much actual measurable output after costs.
So, we have pivoted the way it works completely. We now partner with other organizations, letting them apply for funding and doing all the administration, which allows us to sit back and make sure that what is being delivered and funded is what is needed. It enables us to shape things from the ground up, without getting bogged down with the parts that cause most of the problems and are the most draining. It has enabled us to work on a variety of different projects that we otherwise couldn’t have done; we created opportunities for Autistic people to earn money in advisory roles, where they can make a big impact.
All of this sits much more comfortably with me. I am driven by co-production. I prefer knowing that those with expertise in specific areas can step in and fill the gaps in my knowledge, which was why I set up The Autistic Cooperative several years ago, which is a network for Autistic professional and semi-professional advocates. I do not like working independently all the time and being seen as some kind of “expert,” because I’m not and there is no such thing. It allows me to be independent when I need to be and come together with others when I cannot be. Being a part of something where Autistic people are working together is also an incredible learning opportunity and fascinating to watch and be part of.
Ultimately, it enables me to have my own identity and a shared one.
NN: What would you say has been your greatest moment in your advocacy career?
KR: This is difficult because I hate attention (praise in particular), and feeling prideful makes me uncomfortable. I do not tend to look at life as wins or losses, more in terms of a “what can we learn from this particular experience.” This may have something to do with Alexithymia and not knowing what I am feeling at a particular time. Even with feedback from when I have delivered training, I ask my wife or the people I work with to filter out the criticism and to keep the praise away – because I really do not know how to handle it. I do not need praise, because none of what I do is about my feelings or stroking my ego. It is not about me.
If pressed, I do not think there is a single “moment,” perhaps more of a continual series of milestones.
I suppose it pleases me that so many people have read my work on my website (around 1.5 million) – not in a “aren’t I popular” kind of way, but more in the hope that if 10% of readers have taken on board 10% of what I have written, that might be the difference in the way someone is supported or understood, especially when reinforced by so many other amazing advocates working in various, different ways.
I co-run support groups that collectively cover around 100,000 people and it makes me glad that I have been involved in connecting so many people and helping them feel validated. It feels like I am giving something back to a community that unwittingly has given so much to me. If I were not embedded in the heart of that community, I would be both lost and a hypocrite – how can anyone be part of changing systems and dynamics if they aren’t on the ground in the middle of that? It confuses me why so many people who consider themselves advocates do not seem to exist amongst the general population of the community they claim to represent.
If you had to force me, I think the thing that maybe will have the biggest impact of everything I have done will be the publication in Autism in Adulthood of an academic paper I have co-written, which is focused on Autistic masking and re-conceptualizing how masking is looked at. It strongly challenges the current narratives out there around masking being a series of social strategies and argues the case for it being recognized as a trauma response, that it is not a choice and is also comparable with the same trauma responses experienced by other stigmatized and marginalized groups. It challenges the current narratives around gendering Autism, which are embedded in a complete lack of understanding around the gender and neurological systems. It also highlights the problematic nature of how different groups of Autistic people are viewed through ableist, sexist and racist lenses.
I am incredibly passionate that research stops following non-Autistic driven agendas around this and starts listening, instead of doing so performatively.
NN: Who are your inspirations?
KR: The Autistic community is my biggest inspiration. I am constantly learning, constantly experiencing new understandings of both Autism and myself. I honestly would not be alive if it were not for it, so I am eternally grateful.
My wife, who is herself disabled physically, is a constant source of inspiration and support with her quiet need to focus on everyone else, despite having no answers to an increasingly disabling condition.
I am inspired by my forerunners, giants upon whose shoulders I and others stand. Autistic people
who have and continue to make change. People like Jim Sinclair, Mel Baggs and Donna Williams (all sadly deceased); In the US, Max Sparrow, Cal Montgomery, Amy Sequenzia, Riah Person and Morénike Giwa-Onaiwu. People in the UK like Larry Arnold and Dinah Murray. But also, those who have fought for justice in various ways and whose lessons can easily be applied to the Autistic and wider disability movements, especially W.E.B Du Bois, whose work on identity I am eternally grateful for and who has become a bit of a hero for me.
NN: What do you hope to achieve in the future?
KR: This is a huge question!
On a grand scale I want sustainable change that enables all Autistic people to live the life they want and the life they deserve. I want those barriers gone. I want us to be able to lead our lives as our authentic selves and not have to live in fear of invalidation, of neglect, of harm; a people who are identified by our strengths and not pathologized into a series of inaccurate descriptors based on an external view of our trauma. I want the rights of all Autistic people applied and those of Autistic people with learning/intellectual disabilities at the forefront.
I want Autistic culture validated and recognized. I want research to catch up with the Autistic community, to truly listen, truly engage and prioritize the areas the community recognizes as important.
We need to stop being lab rats and be active participants that lead and control our own futures.
On a personal note, I want the narratives around masking to change and am hopeful that research I am working on will add to that end.
Finally, I am writing a book that repositions clashes between Autistic people and non-Autistic people across various areas such as language, behavior, movement and so on, from a deficit-based view to one that recognizes Autistic culture and identity. I am about 100,000 words in and would love to see that published at some point before I am too old to see the screen!
Ultimately, I want our lives to be better, valued and fulfilling; not lived at the whim of people who cannot recognize their own privilege and ableism.