Democratising Autism Knowledge: The Impact of Self-Publishing
As a psychotherapist who discovered later in life that I am autistic, I've had the unique opportunity to witness a significant shift in the autism landscape, from both personal and professional perspectives. The advent of social media and self-publishing platforms has ushered in a new era of autism discourse, one where autistic voices are not just heard but are leading the conversation. This article explores how this digital revolution has reshaped our understanding of autism, influenced research and policy, and transformed therapeutic approaches.
The Rise of Autistic Voices
The democratisation of information sharing through the internet has led to a surge in first-hand accounts, personal blogs, and social media discussions led by autistic people themselves. Not only advocates such as Chris Bonello and Kieran Rose, or professional academics like Damian Milton, Fegus Murray and Monique Bortha, but everyday people, like you and I have used the internet to let people know what being neurodivergent is like in real life. Simply in everyday life.
This shift has moved us from a paradigm where autism was primarily written about in clinical materials and defined by observable behaviors, to one that is bursting with rich descriptions of internal experiences and authentic life issues, both large and small.
As an autistic person, I've found this wealth of firsthand information invaluable. Not only does reading and listening to autistic people provide insights into sensory experiences, thought processes, emotional landscapes, and social interactions, but also I feel connected and real. These are people like me!
Redefining Empathy: The Double Empathy Problem
This expanded understanding has profound implications for how autism is understood by medical professionals, therapists, and by the general public. One of the most significant shifts in autism discourse has been the reassessment of empathy in autistic people. For decades, a lack of empathy was considered a hallmark of autism. However, as autistic voices gained prominence, a different narrative emerged.
Autistic individuals began sharing experiences of intense empathy, often to the point of overwhelm. They described difficulties in expressing empathy in ways that non-autistic individuals readily recognise, rather than an absence of empathetic feelings. This led to the development of the "double empathy problem" theory, published by Damian Milton, and evidenced repeatedly in research projects.
The ‘Double Empathy Problem’ theory posits that the communication difficulties between autistic and non-autistic individuals are bidirectional. They are not uni-directional, with the autistic person having a defict of understanding of allistic people. It's not that autistic people lack empathy, you see, but rather that there's a mutual difficulty in understanding and relating to each other's experiences and perspectives. And that the way that autistic people experience and express empathy is not done in the same way, necessarily, as people of the neuromajority. So, those differences had always been translated as autistic people being non-empathic, rather than empathic but experienced and expressed differently. As a therapist, I've found this framework incredibly useful in helping both autistic clients and their families cope with the very distressing and frustrating frictions that can occur in relationships of all kinds.
The Impact on Research
There’s absolutely no doubt, the rise of autistic voices is transforming the landscape of autism research. We're seeing a shift from research on autistic people to research with and by autistic people. Autistic researchers are bringing their lived experiences to bear on academic study, offering insights that might be missed by non-autistic researchers and helping to shape more relevant and impactful research questions.
Moreover, there's a growing emphasis on participatory research methods, where autistic individuals are involved at every stage of the research process. This approach ensures that research priorities align with the actual needs and interests of the autistic community, rather than being driven solely by external agendas.
In my practice, I've found that staying abreast of this research, particularly studies led by autistic researchers, has enhanced my ability to provide evidence-based training courses for other therapists, as well as provoking more and more insights to augment my work as a psychotherapist offering neuroaffirming therapy.
Policy Shifts: From the Margins to the Mainstream
As autistic voices have gained prominence, there's been a gradual but significant shift in how autism is addressed in policy circles. Increasingly, governments and organisations are recognising the importance of consulting with autistic people when developing autism-related policies.
The "Nothing About Us Without Us" principle is gaining traction in autism policy discussions. Taking this principle into policy making and design of processes ensures that autistic perspectives are central to decision-making processes that affect our lives. We're also seeing an embracing of moving away from the medical model of autism in journals, information guides, and policy documents where neuroaffiming, inclusive language is now being used. Given that stereotypes, myths, and deficit-based terminolgy perpetuates stigmatisation of autism, using language that refers to differences (rather than words of ‘deficit’ or ‘disorder’) respects the recognition of the natural perspectives that autistic people have and the strengths that we bring to society.
The Neurodiversity Movement: A Paradigm Shift
Central to many of these changes is the neurodiversity movement, which has gained significant momentum through online platforms. This perspective frames autism and other neurological differences as natural variations in human neurology rather than disorders to be cured. You only have to look at your own Facebook, Instagram, or LinkedIn feed to see neurodivergent people taking advantage of the opportunity to access the means to make personal publications or broadcasts so that you can be involved in also hearing from neurodivergent people themselves the accurate and un-distorted ways of neurodivergent differences.
The neurodiversity movement is a sea of influence, made up of neurodivergent people, and it challenges the medical model of disability, which locates the "problem" within the individual. Instead, it adopts a social model, explaining that many of the challenges faced by autistic individuals stem from a society that isn't designed to accommodate differences.
As a therapist, I've found that incorporating this perspective into my practice, along with my psychotherapy training and accumulated inishghts to work from a bio-psycho-social model, has been transformative. Having that positionality underpinning everything that i think about, see, and do, in my work with neurodivergent clients, allows for a more holistic, strengths-based approach to therapy. And frames my work as exploring and resolving distress, pain, or disharmony but also respects my clients and make primary the inherent value of how they see themselves, and the world, and how they conceptualise a happy, fulfilling life.
Transforming Therapy: From the Outside In
The increased availability of autistic perspectives has been invaluable in helping therapists better understand and support their autistic clients. For example, the concept of "autistic burnout," widely discussed in online autistic communities, has gained recognition in therapeutic circles, somewhat. This has led to increased focus on understanding cause-and-effect (including interpersonal dynamics, environmental factors, and external pressures) and supporting them in understanding their needs, viable self-advocacy, and developing sustainable self-care practices, that are tailored to them and their situations.
The Future of Autism Discourse
As we look to the future, it's clear that the influence of autistic voices will continue to grow and shape the understanding of autism, for everyone, not only for therapists. We can expect more nuanced discussions that acknowledge the diversity within the autistic community, including considerations of how being autistic intersects with other aspects of identity.
In the workplace, we may see more initiatives focused on recognising the strengths and challenges that neurodivergent people have. In some companies neurodivergent employees have created a community of peers for support, information, and a sense of belonging. In education, insights from autistic people, autistic academics in particular, are seeking to drive significant changes in educational approaches, moving towards more inclusive and neurodiversity-affirming practices.
Implications for Clinical Practice
As well as producing my own materials, both online and in person (see footnote) I continue to consume media produced by neurodivergent people. As a psychotherapist, I've found that staying engaged with these everyday real-life tid-bits as well as technical materials includes me in evolving discussions. Keeping informed and continuing to grow and evolve my own understanding is crucial for providing effective, respectful, and empowering therapeutic experiences and outcomes for neurodivergent clients because even as a neurodivergent person myself, there is still more for me yet to understand.
Conclusion
The digital revolution in autism discourse represents a significant shift in how we understand, research, communicate about and approach autistic people. By amplifying autistic voices, we've gained invaluable insights into the internal experiences of being autistic. Not only autistic people, but the voices of all neurodivergent people have challenged long-held misconceptions, and consequently opened up new assumptions around what are the norms for support and inclusion.
The impact of the publications and broadcasts by neurodivergent people has enriched scientific research and professional expertise by providing crucial context and direction. The lived experiences of autistic individuals, now more accessible than ever, serve as a compass, guiding us towards more relevant research questions, more effective therapies, and more inclusive policies.
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You can see the rest of my Vauna Beauvais psychotherapy practice blog posts here, and if you’d like to listen to a YouTube podcast of myself and a fellow therapist talking about being autistic and mental health and wellbeing, and you might want to watch my new (and growing) video series on neuroaffirming therapy here.