Studio 3 reviews ‘So, I’m Autistic: An Introduction to Autism for Young Adults and Late Teens’ (2023) by Sarah O’Brien.
Sarah O’Brien is a 26-year-old autistic advocate and academic who works with autistic young people, helping them to thrive in life, and supporting them to live the lives they want to in a world that isn’t always accommodating. In this book, Sarah provides information, guidance and advice for newly diagnosed or questioning teens and young people. The focus of this book is on working out what autism is and what it means for you as an individual, debunking some myths, stereotypes and stigmas along the way. This book is a helpful guide to navigating all the ‘firsts’ of adulthood as an autistic person and finding your path.
The first part of the book is about understanding autism from a strengths-based perspective, and recognising neurodivergence not as a deficit but as a difference. Sarah’s first-hand experience of struggling with her own autistic identity in early adulthood guides the narrative.
‘Unfortunately, I’ve struggled through many years to get to the point of knowing how to exist in a world not built for us.’
There are many myths and misunderstandings around what autism actually is, which this book attempts to demystify. A large part of this, as Sarah says, is centred around the use and misuse of language. Many of us will be familiar with autistic people being referred to as high or low functioning, by person-first language, or as ‘sufferers’ of autism. Sarah explains why she personally prefers identity-first language, and points out ways in which language can be empowering or disempowering for autistic people. For example, a person’s ability to function may vary on daily, even hourly basis, depending on the environment and the demands being placed upon them, therefore to categorise people as being high or low functioning is divisive and inaccurate. Sarah unpacks some of the residual ideas from medicalised models around disabilities and autism, and encourages readers to unlearn some of the deficit models that they are exposed to before, during, and after diagnosis.
‘With increasing input from autistic people, we are moving form language that stigmatized us and was shaped by others to language that we are shaping and deciding upon ourselves.’
Language is so important, and we must move away from medicalised language that places the deficit within the person. Instead, following a social model of disability, it is more helpful to discuss support needs in terms of the environment and the situation a person finds themselves in.
‘This places emphasis on the fact that the environment needs to change to support the autistic person rather than the autistic person needing to change to fit the environment or society. It removes the responsibility from the autistic person and makes the responsibility for inclusion collective.’
In this book, the author also attempts to debunk some myths and stereotypes around autism in order to negate some misunderstandings and misinformation. There is a strong emphasis on recognising the role of society at large and the immediate environment on neurodiverse presentations. For example, Sarah talks about how autistic meltdowns are often perceived as ‘tantrums’ by onlookers:
‘It’s important to understand that a meltdown is not a tantrum but is a reaction to a highly distressing situation or environment.’
In many ways, the world was not built to accommodate neurodiversity, and this can make the world an extremely chaotic and uncertain place for autistic people. This can mean that autistic people have to mask in order to survive in neurotypical spaces, which can be highly demanding on a person’s coping resources. This can be incredibly uncomfortable and draining for people, as Sarah describes:
‘There are still days on which I hide, and I squirrel away all the pieces of myself until I become a knotted mess of identity. I conceal the stims my hands wish to paint in the air as my body moves to a different tempo through space and anxiety. I feign confidence and comfort around big conversations that wade through the sludge of small talk. I hold my body in the vice of engaged postures and twist my body language to map, mirror, and reflect the faces looking back at me.’
The language used here demonstrates just how uncomfortable it can be to ‘twist’ one’s natural responses, and ‘conceal’ your true self. The onus should not be on autistic people to change to fit their environment, but on the community to recognise, understand, and support neurodiversity in all its forms.
The second part of the book looks at thriving while autistic, including navigating co-occurring mental and physical health problems, and helpful advice for advocating for equal access to healthcare. This section discusses some of the ways that mental health conditions can present differently and co-occur alongside autism, which can make accessing diagnoses and treatment more difficult:
‘Autism shapes so much of our daily experience and perception of the world. When you add on different health conditions, that can make daily life more difficult to manage. Difficult, mainly because it means managing your sensory experiences, societal expectations, anxieties, and processing what is going on – all alongside physical health conditions which can make those systems harder.’
Whilst Sarah acknowledges that there are some ‘scary’ statistics about autism and physical and mental health, these are ‘generally a result of autistic communication differences not being understood or supported.’ This means that accessing reasonable adjustments within the healthcare system, as well as at work or at school, is incredibly important. Sarah provides a helpful guide to making sure your needs are understood and met appropriately.
‘The fault lies within an inflexible system that has not listened to or appreciated the needs we have.’
Making big decisions for your future as a young person can be extremely stressful. Sarah shares some thoughts and guidance around making big life changes, such as choosing whether to pursue further education, where to live, and advocating for yourself within these spaces. It is important to explore your own autonomy and independence, and surround yourself with people who empower you to choose your own path.
‘You don’t have to have all the answers when you start making decisions and you might make some wrong ones, but they are your choices for your life.’
The book also emphasises the importance of finding a supportive community, and coming together with people of shared interests. Sarah stresses that community does not have to be a physical place – online communities are just as valid, such as discord servers or communities such as SpectrumGaming.
‘Finding so much similarity, where I had been told for so long that I was weird and unlike so many other people, shook the very foundations of what I thought about myself.’
For many people, finding a community of like-minded people is the difference between feeling like an outsider in the world, and feeling like part of a wider support network.
In conclusion, ‘So, I’m Autistic’ is a helpful guide for young people who are considering a diagnosis of autism or have been recently diagnosed. With a strengths-based focus throughout, this book provides information and advice to help young people who may be starting out on their neurodiversity journey. It shares thoughts about neurodiversity, and how society can adapt to best support autistic and otherwise disabled people, not the other way around. Sarah’s positive outlook and proactive advice provides an important perspective on navigating early adulthood whilst battling myths and stereotypes surrounding autism that can often be misleading and confusing.
‘So often the conceptualization of autism is not of autistic people thriving but of autistic trauma and distress. When we are allowed to define ourselves and create our community, we can reframe this away from trauma and towards success or even neutrality.’
Studio 3 Information and Social Media Coordinator