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  • Writer's pictureThe Publishing Post

Activism and Neurodivergence in Charli Clement’s All Tangled Up in Autism and Chronic Illness

By Eleanor Bowskill, Nalisha Vansia, Zarah Yesufu, Hannah McWhinnie and Katie Farr

In this important debut, Charli Clement sheds light on the often overlooked intersection between autism and chronic illness. As an activist, writer, speaker and Lived Experience Consultant on issues surrounding autism, Clement brings together both their own experiences with autism and chronic illness with a range of others’ perspectives to explore this complex issue. All Tangled Up in Autism and Chronic Illness offers advice on dealing with diagnosis, pain management and the prejudices and barriers faced by those with autism and chronic illness, making it a valuable resource for those within this intersection – as well as their friends and family – and anyone who wants to learn how to best support this community.

Clement is active in their approach to voicing the issues that are close to their heart. This summer, they attended an event at the House of Lords and spoke about human rights and psychiatric care. Clement used their own negative experiences of psychiatric inpatient care to talk about this. Although All Tangled Up does not focus on this matter in detail, Clement notes that “everything is still linked – my chronic illnesses were extremely exacerbated by lack of care during my admission, and many face institutionalisation whilst experiencing this combination of needs.” Whether talking about All Tangled Up or talking at a prestigious event, Clement feels “lucky to work in a number of different avenues across multiple sectors when it comes to autism and disability.”

Writing All Tangled Up whilst having ADHD was “definitely a challenge” for Clement. But learning how to work with their condition, rather than against it, helped to keep the book on track. For example, “external accountability was crucial.” They met with their editor once a month which gave structure and discipline to their routine, “they [found] self-imposed deadlines didn’t work as [they] knew [they] weren't real!” In addition, Clement used tools like a website which calculated how many words they needed to write a day to meet deadlines, citing it as the thing that “saved” them. Being clear about the fact that they didn’t write every day though, Clement said, “I had to learn to lean into writing when I wanted to write, not trying to be super regimented or force it. My brain just isn't wired for that!”

Clement’s book not only amplifies their own experience as someone with a disability and neurodivergence, but also brings forth a myriad of voices from people with similar, yet unique experiences. “I wanted to include a variety of intersectional experiences… and was so utterly privileged to be trusted with everyone's experiences and gained such a wealth of learning around intersectionality” Clement says. Through interviewing people, they were able to learn about how they communicate and in which ways they could communicate their questions better. Clement explains “I'd asked it in a way that made sense to me, but wasn't an effective question or had a subtly different implication than what I wanted.”

Clement believes these anecdotes are what’s best about their book and says “my hope is twofold – I hope people get an insight to experiences other than theirs, but I also hope it means people realise that they aren't alone.”

Reflecting on the increasing diagnosis rate of neurodivergence and its relation to social media awareness, Clement observes that this comes at a time where society has a stronger “notion of presentation in marginalised genders or those who are non-white, for example, in a way that the diagnostic criteria and previous stereotypes have simply not allowed for.” However, Clement explains that many “spaces that may seem progressive” are only focused “on why neurodivergent people are employable” – an angle which, to Clement, “isn’t progress.” The support for neurodivergent individuals is “gatekept monetarily, by lengthy processes” and “assessments done by people with little understanding,” whilst in the media “we’re seeing constant articles demeaning our experiences as just trends or social contagion.”

Clement affirms that “we have to be accepted for all that we are for it to be real progress” and although there is much to still be done, seeing “individuals accommodating themselves” with the “power of knowledge they are gaining” is “something worth celebrating.”

For Clement, professional environments have been more accessible than those in academia. They found the latter “very difficult” as there has been “much more gatekeeping, more admin and less support” along with “ableist attitudes” being more commonplace. However, this experience has changed over time. After two years, full-time education became “inaccessible” for Clement and switching to part-time “transformed” their ability to “properly engage” in their studies. This meant less frequent “emergency extensions,” or rescheduled exams.

Clement feels “lucky” to have been granted access to the Disabled Students Allowance, and has received equipment and mentoring support this way. Importantly, only around “half of all eligible students” access this fund, so they “highly recommend” looking into it. Professionally, Clement sets “quite significant” boundaries and has an email signature and auto-reply detailing that they “need more time to respond” and for “people to communicate clearly” with them. Freelance work does help to avoid the “inaccessible office environment or linear working hours,” which, by their admission, would be “too much to manage.”

The variety of work that Clement engages in is undoubtedly impressive, but it is often difficult for them to “show all sides of it at once” and help people see how it all links together. Online feedback is “much more accessible” to disabled people, whether that be because email communication is “easier” than talking out loud, or because of “household shielding.” But sometimes it can feel “less personal” as someone “who finds it easier to open up in person” or when greater interaction between participants is needed for work training sessions. Social media allows Clement to communicate with their communities in a more “casual” and “authentic” setting. They love “discussing others’ lived experiences through content creation” and feeding that back into their work.



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