Written by Donna Henderson and Sarah Wayland, with Jamell White, Is This Autism?: A Guide for Clinicians and Everyone Else was published in June 2023. As its name suggests, the book focuses on how traits of what is now known as autism spectrum disorder (ASD) can manifest in less obvious and previously unrecognised ways. (I’m sure that many people on the spectrum probably don’t see themselves as “disordered”, but that’s the terminology currently used in the DSM-5 and ICD-11.) For simplicity, I’m referring to this group of conditions as “autism”. And this piece is half-review and half-riffing on topics brought up in the book.
The language and viewpoints of Is This Autism? are accessible and validating to a wide audience, including laypeople, those with autism, families, health providers, and other minority groups. Importantly, the book unpacks, sometimes criticises, and expands upon the jargon of the diagnostic criteria (the diagnostic manuals and related literature have a history of being extremely judgy and somewhat condescending – kind of like some health“care” professionals).
Why they wrote the book – and their approaches
In the “Introduction” (the “Why” of the project), the authors – who identify as neurodivergent – mention that they first intended to write for clinicians, as many health practitioners lack the confidence to accurately identify or diagnose the condition/s. Part of that is because they have outdated knowledge of what an autistic patient looks like.
Autism is neurodevelopmental, so it is often identified in children. But this isn’t always the case (“characteristic symptoms may not become fully manifest until later, when social demands exceed limited capacities”, in the clinical words of the ICD), particularly for females and those whose traits don’t present in traditional ways. People on the spectrum are still often misdiagnosed with a wide range of conditions or have their autism missed entirely. Moreover, if you asked the authors 40, 30, 20, or a few years ago the simple question “What is autism?” they would’ve answered differently each time.
Autism research has “evolved tremendously” over the last couple of decades, and scores of autistics don’t fit the classical mould. Interestingly, although the last decade or so has seen greater interest in the “female autism phenotype”, the authors already view this construct as a bit outdated or inaccurate; many girls and women fit a more traditional presentation while many males don’t. The other reason they chose not to break it down along lines of biological sex is out of respect for gender-diverse and non-binary individuals.
Very early on, Is This Autism? addresses the how and why of other important considerations, such as:
- Cultural differences in presentation;
- Language choices, for example, person-first or identity-first terms (“person with autism” or “autistic person”);
- How they refer to allistic or non-autistic people; and
- Inclusion of female-specific research insights, as these help inform what autism can be like for anyone.
The introduction states: “Unidentified autistic individuals can spend their lifetime with a persistent sense of not fitting in”, and may wonder: What is wrong with me? Why do I feel like I never belong? And similar ruminations. Autistic people, identified or unidentified, often feel exhausted from ongoing invalidation and constantly camouflaging, masking, and trying to conform to a neurotypical world.
About language use: As is the case for many communities, the autistic one comprises millions of individuals with their own nuanced views and preferences, and no lone individual can claim they represent the entire demographic (really, we only represent ourselves). So, language usage is an area where it’s beneficial to consult with a diverse range of persons who identify with a term, while also remembering that, whatever words you choose, you very likely can’t please everyone.
Another topic covered is the medical model versus the neurodivergent paradigm. The biomedical model often has a terrible reputation – especially in the disability space – for depicting the person as a problem to be fixed: you have a disability or a disorder because you’re unable to behave as expected; your impairments need to be fixed or cured so you align as closely as possible with society’s ideals of health and normality. The neurodiversity approach views autism and autistic traits as a natural part of human biodiversity that does not need to be cured. Once upon a time, homosexuality was listed in the DSM. Is there anything that can’t be pathologised?
(This is a long tangent that you can skip: In some senses, the neurodivergent paradigm is similar to the social model of disability, which I only learned about pretty recently. According to this piece, the social model sees “disability” as arising from one’s “impairment” encountering societal barriers – attitudinal, environmental, institutional, and communicative – that disable them. Society has disabled you, rather than disability being something inherent to who you are. Instead, you have an “impairment”, disease, condition, disorder, or whatever you, as an individual, want to call it – as long as you don’t call it a “disability”.
The neurodiversity standpoint is probably a tad different, defining “disability” as: “The product of an interaction between the characteristics of a disabled person and the environment around them”. In any case, for those with disability, however defined, it can be challenging and take much time to internalise new paradigms when the medical model is what we’ve been taught our whole lives; ableism is also covered in the book’s introduction. Additionally, many autistic people probably do not identify as disabled.)
But as the authors bring up, if a person is struggling, a diagnosis, rather than suggesting that something is “wrong” with the person, can lead to helpful interventions and supports, such as workplace adjustments, appropriate therapy, peer support, and a validating community. In their opinion, an autism diagnosis is actually empowering, especially when presented in a “neurodiversity-affirmative manner” and can protect against “inaccurate or pejorative labels (e.g., ‘difficult,’ ‘overly sensitive,’ personality disorder diagnoses)”. A diagnosis from an impartial third party or an educated self-diagnosis may also help to replace confused frustration with greater self-understanding and self-acceptance.
So, Is This Autism? is for anyone interested in learning from the latest research and understandings, offered in an affirming and sensitive manner, and also from the true experts: those with lived experience. With respect for “nothing about us without us” (which comes from disability activism), 100 autistics contributed to the project, providing consultation and feedback on each chapter and offering illustrative quotes.
The meat of the book
Part 1, the largest portion, is called “What can autism actually look like?” and starts by outlining the current DSM-5-TR and ICD-11 criteria, and their similarities and differences. Then, chapters 2–8 respectively focus on:
- Nonverbal communication
- Repetitive or idiosyncratic behaviour
- Intense or atypical (not “abnormal”!) interests
- Sensory differences
Each chapter begins with what many people generally believe these categories entail for autistic individuals (“autistics do not make eye contact”, “hand flapping”, “lacks empathy”, “overtly atypical interests”), before diving into detailed explanations that broaden our awareness of how these aspects and traits can actually present in someone with autism. These insights are derived from clinical experience, life/personal experience, and research.
Rounding out each chapter are these sections: “From the experts”, with numerous quotes from autistic people depicting how their signs and symptoms (if you want to label them as such) appear in and influence their real life, “What we’ve learned from the girls”, “Connecting culture”, anonymised vignettes based on true stories, and frequently asked questions (e.g., “When is a repetitive or idiosyncratic behavior merely quirky and when does it qualify as diagnosable?”). Sprinkled throughout are discussions on related topics, such as misophonia and the myth of low empathy (I’ve read that misconception about people with borderline personality disorder too).
Part 2 of Is This Autism? focuses on “What else might be part of this presentation?”. Its purpose is to draw attention to the co-occurring conditions that an autistic person might experience, such as emotional, cognitive, physical, medical, and other challenges (the last group including adaptive functioning, driving avoidance, school avoidance, and gender and attraction). Considering how many on the spectrum have missed, inaccurate, or late diagnoses, it is a bit unfortunate that the book doesn’t address differential diagnosis. That’s covered by Is This Autism?: A Companion Guide for Diagnosing.
The last chapter is lovingly devoted to autistic strengths, emphasising (perhaps in line with the neurodiversity and/or social models) that what is a disadvantage, or causes a disadvantage, in one environment can be a major strength that is celebrated and enhanced in another setting. As the authors write:
Highlighting individual strengths is important, because when a person knows what they are good at, it can help them focus on developing and nurturing their strengths. This is much more heartening and hopeful than focusing all their energy on “fixing” themselves.
Monique Moate is a writer, editor, wife, cat mum, and night owl who enjoys writing about a wide range of topics. She cares about mental health awareness and destigmatisation.