All Tangled Up in Autism and Chronic Illness: A guide to navigating multiple conditions

by Charli Clement

In this ground-breaking debut, Charli Clement combines their own experiences alongside unique short profiles from individuals with chronic illness, to provide an intimate and insightful look at the complexities of living as an autistic and chronically ill person.

From navigating your diagnosis and healthcare, learning how to manage pain and your own sensory needs to dealing with ableism, medical misogyny and transphobia, Clement offers practical advice and delves into the unique challenges faced by individuals living in this intersection.

With a focus on the unique neurodivergent experience and an exploration into disability pride and joy 'All Tangled Up in Autism and Chronic Illness' is a necessary and empowering resource for autistic and chronically ill people as well as for family members, friends, and healthcare professionals.

Genres: Autistic Spectrum Disorder, Nonfiction, Disability, Mental Health, Health, Self Help, Psychology

272 pages, Paperback

Published December 21, 2023

Reviews

[Emma · Rating 5 out of 5]

Thank you NetGalley, the publisher and the author for the ARC of this title in exchange for an honest review.

As someone who struggles with chronic illness/disability and is awaiting an autism diagnosis I was really excited to be accepted to read this ARC.
I unfortunately didn't feel like I gained too much from this as I was already aware of most of the helpful tips because I have been ill for so long already. It was nice however to have the confirmation that I am not alone. Thousands of people are going through the same daily struggles as I am.

I think this book would be perfect for newly diagnosed people, teens or guardians/carers.

I loved how many disabled people got to have a say and be represented in this book on a multitude of topics, as we are all too often talked over or outright silenced.

[Jill Rattray · Rating 5 out of 5]

Thank you to Net Galley for an advanced copy.

I’m fairly picky when it comes to books about autism. I find a lot of content very samey and from people I can’t relate to. This book is not like that.

Charli’s book is full of helpful advice for autistic people dealing with chronic illness or for the people who have an autistic person in their life. She gives advice without being condescending and with a wisdom of someone a couple of decades older.

I wish this book had been written a couple of decades earlier.

[Heather - Just Geeking By · Rating 5 out of 5]

Originally posted on Just Geeking by as a part of repDISND 2024!


Content warnings:
This book discusses medical trauma, medical gaslighting, prejudice and ableism.

There have been multiple books about autism and others about chronic illnesses, but until now there wasn’t one that talked about both and what it is like to live with them. All Tangled Up in Autism and Chronic Illness by Charli Clement takes into consideration that there are many people who have both autism and chronic illnesses. Talking from their own experience, and incorporating the experiences of people they have interviewed, Clement has built a valuable resource.

The topics, listed as chapters, are:

Navigating diagnosis and healthcare

Everyday life

Sensory needs

Pacing and routines

Education and employment

Personal relationships

Experiencing ableism

Gender, medical misogyny and menstrual health

Disability pride and disability joy

I found this book to be instrumental in helping me learn more about myself. Any doubts I had about my autistic identity were banished by the time I had finished it. I’m currently on a long waiting list for a formal assessment and have had to piece together information as I go along. It was great to finally have someone explain things like interoception, proprioception and the vestibular system in terms that relate to my chronic illnesses as well.

I highly recommend this book to anyone who is autistic and chronically ill, but also to anyone who has not been diagnosed or self-diagnosed as autistic. There are a lot of overlaps with chronic illnesses, and many people have been overlooked and/or misdiagnosed due to medical bias. This is something that Clement discusses, and All Tangled Up in Autism and Chronic Illness may help you learn something new about yourself.

A list of all chronic illnesses mentioned in this book can be found under “Disability Representations” at the top of the review on my blog.

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[Kara Aragon · Rating 3 out of 5]

I'm not sure what I expected from this book but to me it was just too "well yeah duh". Like the advice was so practical that I find it hard to imagine that anyone who is autistic and chronically ill hasn't already chosen to or at least tried to implement the vast majority of "tips" shared in this book already. So in a way the book seems almost kinda pointless to me but if I'm wrong and others find it useful then obv I'm glad it exsists.


PS. I did quite enjoy the font of the paperback book. It was very easy to read, the spacing was nice. I assume this is probably so that it's more easily accessible so I def wanted to praise that aspect.

[Stephanie · Rating 4 out of 5]

I'll write a review soon!

[Lucas · Rating 4 out of 5]

This book is something much needed. It's filled with helpful information and tips and actually functions well as a guide. I absolutely loved it.

[Fi Pritchard · Rating 5 out of 5]

In 'All Tangled Up in Autism and Chronic Illness,' Charli Clement has delivered a groundbreaking and enlightening exploration of the intersection between autism and chronic illness. Drawing from their own experiences and sharing the voices of those who live in this complex space, Clement offers readers a poignant and intimate look into the challenges, triumphs, and unique perspectives of individuals in this community.

What sets this book apart is its unflinching examination of the many hurdles faced by those at the intersection of autism and chronic illness. From the complexities of obtaining a diagnosis to the often-overlooked issues of sensory needs and pain management, Clement provides practical advice with a profound understanding of the subject matter. The discussion of ableism, medical misogyny, and transphobia within the context of this intersection is eye-opening and necessary.

But 'All Tangled Up in Autism and Chronic Illness' doesn't just focus on the struggles; it also celebrates the neurodivergent experience and explores the pride and joy that can be found within it. This balanced approach makes the book not only informative but also empowering.

In a world where understanding and support for autistic and chronically ill individuals are vital, this book stands out as a valuable resource. It's not just for those directly affected but also for their family members, friends, and healthcare professionals who can gain insight and empathy from its pages. Charli Clement has written a thought-provoking, compassionate, and informative debut that is a must-read for anyone looking to broaden their perspective on these intersecting identities.

[Emily · Rating 4 out of 5]

This is a good book. Self declaration, I am autistic, ADHD and have severe asthma, diabetes and mental health issues. So I read this book with personal interest.

A quote from the book that sums it up quite well, "If you’re a chronically ill individual – I want you to remember your worth. You deserve to have the care and support you need, to access any education or work that you want to, and to have loving relationships. It certainly can’t all automatically click into place, and I won’t pretend that reading this book will even begin to touch the surface of stopping all the difficulties you are facing, because of the society we live in often being stacked up against us. But, what I can hope is that you have learnt ways to self-advocate, to love yourself in the face of it all, and learnt some ways you can adjust your own life to make things more comfortable for you."

This book gives practical advice on how to navigate the healthcare system both through a neurodivergent and disabled lens. It talks about the barriers neurodivergent individuals face in accessing healthcare. It also talks about further barriers to being a woman, a minority or non-binary/trans. Sometimes I felt like the book was a bit hopeful about asking for changes or adjustments, but it's worth asking, it's worth standing up for yourself, even if you don't get anywhere. I just wish it wasn't so hard to get the adaptations needed or to be heard when asking for help.

The only thing I felt was missing from the book is that mental health was only covered in a limited respect. I wish there was more information out there for those who struggle with mental health who are also autistic.

I do think this was a necessary book. I hope more health care professionals take time to read it. Until the professionals start to understand autism, we will continue to have problems getting the correct treatment.

[Katie Murphy · Rating 4 out of 5]

Thank you to netgalley and the publisher for the ARC!

As a neurodivergent person who has felt gaslit by the medical community - I truly appreciated this book. I felt validated and seen. This information wasn’t necessarily new to me - as far as health care system navigation - but it was still a good reminder of how I can feel “Stuck” because of flaws in society. My psychology background also made me appreciate the insight into this book, as well as being a nurse ❤️ neurodivergent people aren’t regularly recognized in health care until there’s a major problem and this taught me a lot about the gaps due to ableism

[Pippa · Rating 5 out of 5]

As a neurotypical person, I learnt so much from this book - not only about being autistic in an ableist world, but also about the unique ways autism can impact the experience of being chronically ill and how somebody manages their health condition. Such an important read that will no doubt provide comfort, reassurance, and invaluable tips and guidance to many people navigating this balancing act. Highly recommend!

[Marni · Rating 5 out of 5]

This is an excellent book. I am a neurodivergent person who does not experience chronic illness or physical disability, but I have friends who do. This book will help me better understand their experience.

I found this book affirming throughout in all the important ways - anti-ableist, anti-racist, and generally full of kindness and compassion.

Thank you so much for this information, it is needed in the world. I will recommend it and will buy copies for friends.

Thanks to NetGalley for an ARC copy in exchange for my honest review.

[Codii · Rating 5 out of 5]

The best book on autism I've read to date. Intersectional and nuanced.

[Gabbi Clare · Rating 5 out of 5]

This is a book that I will recommend to anyone and everyone. Whether you’re chronically ill and/or autistic, love or know someone who is, or work with people who are, All Tangled Up in Autism and Chronic Illness won’t just skim the surface of living with these conditions, but will empower and enlighten you on how you can better understand yourself/your peers.

The take-home points are particularly helpful, and the short profiles from contributors offer a huge range of thought-provoking POVs.

Charli’s writing is clear, concise, and they have a unique way of putting the most informative content into easy-to-understand literature.

I truly think All Tangled Up in Autism and Chronic Illness will change lives, Charli offers so much advice for particular issues faced by autistic chronically ill individuals, and so many small changes/adaptations that can be used in day-to-day life to make an such ableist world a little more disability friendly.

Thank you Charli for writing this book, it has already helped me in my personal life, and I know it will help countless others too.

[Devon · Rating 3 out of 5]

All Tangled Up in Autism and Chronic Illness is a decent place to start when it comes to trying to figure out how to deal with neurodivergence and chronic illnesses. It is incredibly basic but has some good anecdotes. I feel that being on the spectrum it is almost to broad for me, what goes in one situation doesn’t always translate into other situations. In this case it might be helpful to buddy read this with someone to allow for easier translation to life situations. Someone without these issues might find this book easier to use and comprehend.
I received an ARC and am leaving a review of my own volition.

[Natalie Coyne · Rating 5 out of 5]

More like a 4.5 or 4.75 rounded up to a 5. This is an excellent read, and one that I would recommend to almost anyone, whether you are Autistic and chronically ill yourself (like me), or want to learn more about the best way to accommodate people who are Autistic and/or chronically ill. I won't go too much into the latter part of that, but for the former, I felt incredibly seen in so many of the things highlighted in this book and, while some of the tips were things I already knew, there are also some tips and motivational words in this that are new.

I also just saw myself seen in the experiences of the interviewees, especially as there was some overlap in some of the chronically ill conditions. I, myself, have endometriosis, ADHD, fibromyalgia, GI issues, and non-24 sleep-wake cycle disorder (amongst other conditions, but these are just the ones I recall interviewees in the book also having). Which, by the way, I was caught off-guard by seeing non-24 mentioned in the book, especially as it was early on in the book, as I feel it is really not talked about and I didn't even know about the overlap between Autism and circadian rhythm disorders.

All of this being said, this book, while something I think everyone should read, is written to be best suited for British readers. That makes sense, seeing as Charli Clement is British. But it means that there are some resources, laws, etc. throughout that, as an American, I read and there's nothing I can do with those particular resources. A piece of advice that is mentioned multiple times throughout the book is using a sunflower lanyard to signify that you have an invisible disability, something very common and very easily recognizable in the UK to, well, signify someone has an invisible disability. But I ended up sighing each time I read it, because it's just not applicable in the US.

Of course, this is a bit picky on my part. Obviously, not every advice in every situation will apply to everyone. But I did want to throw this out there so other potential readers know, especially other potential readers who are Autistic and/or chronically ill themselves. This is also what, personally, led me to the 4.5/4.75 true star rating.

Otherwise, I do still recommend this. It's also a really easy read, and the paperback was clearly designed with readability/accessibility in mind. The font size, font choice, and spacing is really great.

[Debbie · Rating 3 out of 5]

"All Tangled Up in Autism and Chronic Illness" by Charli Clement is a heartfelt exploration of the intersection between autism and chronic illness. With a warm and authentic voice, Clement shares her personal journey as a parent navigating the complexities of raising a child with both autism and chronic health challenges.

The book not only provides valuable insights into the daily struggles faced by families in similar situations but also offers a beacon of hope and resilience. Clement's candid storytelling allows readers to connect on a profound level, fostering understanding and empathy.

What sets this book apart is its balance of vulnerability and strength. Clement doesn't shy away from the tough moments, yet her unwavering determination and love for her child shine through. The narrative is both informative and emotionally resonant, making it an essential read for anyone seeking a deeper understanding of the intricate web of challenges faced by families dealing with autism and chronic illness.

In "All Tangled Up," Charli Clement delivers a powerful message about the strength found in embracing the complexities of life, turning a personal journey into a source of inspiration for others.

[Georgia Holliday · Rating 5 out of 5]

All Tangled Up is a concise yet in-depth guide for people (like myself) trying to navigate multiple conditions alongside being autistic.

The book covers everything from diagnosis to everyday life to ableism, medical misogyny and more in a truly intersectional and inclusive way.

Charli has done a fantastic job of breaking down really complex topics into easy to understand chapters packed with information, advice and tips from both their own lived experience and insights from others within the community.

A summary of key takeaways can be found at the end of each chapter making All Tangled Up a truly accessible guide for an autistic ADHDer with brain fog and low spoons, like me. My copy is filled to the brim with notes and highlighted passages that I can come back to time and time again for validation, support and guidance.

If you are newly diagnosed or feeling overwhelmed with how to navigate life with autism AND chronic illness, start here. You absolutely won’t regret making this book a staple on your bookshelf.

[Amy Jane · Rating 5 out of 5]

This book is fantastic! I am autistic and have chronic and long-term conditions, and feel so lucky to have been given early access to this book, thank you so much to Netgalley and the publishers! It is fantastically written, and it's filled with useful information, helpful tips, and useful perspectives from so many diverse individuals with a variety of chronic illnesses. I loved that the book has a glossary at the back, it also has a list of social media accounts that you can follow with positive representation of disability and chronic illness and autism. The accessibility of this book is fantastic - it has chapter summaries, large text size, a clear font choice, and accessible language, it's written in such a clear and friendly way with minimal unnecessary medical language. I will be buying a copy of this book when it comes out and referring back to it many times because it has so many useful tips and ideas that I will be using in the future. I highly, highly recommend this book.

[Mamasita81 · Rating 5 out of 5]

4.5/5⭐️

In October of last year I was diagnosed AuADHD at the age of 41 while in the middle of breast cancer treatment. The past 14 months have been exhausting and confusing and lonely. I strongly believe this book would be very helpful for:

▪️neurodivergents
▪️neurodivergents with chronic illnesses
▪️late stage diagnosed adults
▪️late stage diagnosed adults with illnesses
▪️self diagnosed neurodivergents
▪️self diagnosed neurodivergents with illnesses
▪️family, friends and loved ones of neurodivergents

I want to be as inclusive as possible because the diverse group of people interviewed was incredible. This book shows just how complex and under talked this scenario is.

Late stage diagnosed autistic adults could benefit from this guide. It’s hard going through life knowing you’re autistic all along, being diagnosed like me at 41 is overwhelming. You’re listening and can feel hopeless.

Even though I would have loved having this one year ago, I’m proud of myself for figuring out how to help myself. I realized I was doing a lot of these things already. I just didn’t know what those things were called.

Thank you to Netgalley, Jessica Kingsley publishers and Charli Clement for this ARC.

[Madison · Rating 2 out of 5]

I do appreciate the representation and intersectionality, but the broadness left a lot to be desired. I found the advice to be basic and repetitive throughout. I wish the experiences and stories of the people interviewed were more integrated and emphasized into the book. I couldn’t help, but think while reading this is not for me despite the fact I am exactly the demographic this book was written for. Given the content I think this book would be better suited for people new or unfamiliar with disability, chronic illness, and autism. I don’t think there is anything wrong with this book I just found it incredibly surface level considering the audience.

[Finn · Rating 4 out of 5]

3.5/5
A good place to start, especially for young people or those newly diagnosed. If you like lists, clear sections and a thoughtful guide this is for you.

Personally I think I'm just too many steps deep into disability justice for this to have made a big impact on me. I would have liked more depth & intersectionality, but that's not necessarily what this book was trying to achieve so can't fault it massively for that. It was trying to cover a lot of things in one book, and I think Charli did well for their debut.

[brooke ‧₊˚ ☽ ⋅ · Rating 5 out of 5]

4.5/5 🌟 stars.
a good and needed book. I think the first book i have ever seen or read about being autistic & having a chronic illness.
author has done a good job to make the book affirming throughout.

there weren’t any suggestions & tips I hadn’t tried before or heard about before, so it felt a very basic & broad introduction to this topic so may be more particularly helpful to newly diagnosed people :)

borrowed off my friend but definitely going to buy myself a copy too go read back over as i think it would be helpful to share with my partner too!

[Alec ⟠]

I found this book to be a very well-written exploration of different aspects of autism and chronic illness, and how they can interact together. I thought it was very relatable and I enjoyed reading about the experiences of different people, as it showed how different a shared experience really can be. I would recommend this to any autistic people who may or may not have chronic illnesses, and to any non-autistic people and people without chronic illnesses, as I think there is something in this book for everyone.

[Sharon Keegan · Rating 3 out of 5]

It’s a quick and easy read. If you are new to an Autism diagnosis and haven’t done much research yet on navigating the diagnosis, this could be helpful. Since this is the 10th or 11th book I’ve read on coping skills, I didn’t find much that was new. I did appreciate combining the Autism with a disability, because that is a unique approach. I felt that many of the suggestions were simplistic, and one would need more details on how to implement them.

[lizzi · Rating 4 out of 5]

All Tangled Up in Autism and Chronic Illness is a fantastic read. Easy to follow, positive vibe, and overall helpful to balancing autism and chronic illnesses. As someone on the spectrum and with type 1 diabetes, I appreciated that there was a positive way to view life with all of these complications.

[Lexi · Rating 5 out of 5]

Initially I wasn’t entirely certain about this, as the contents of the early chapters weren’t new to me and I didn’t think I was getting much out of it. But I will give this 5 stars because the last 3 chapters or so were largely very relatable and felt affirming and cathartic to read.

[Cat · Rating 4 out of 5]

Highly recommend this to anyone who is autistic cares for, or works with both autistic and chronically poorly people.

[Selma · Rating 4 out of 5]

Great practical guide for freshly diagnosed autistic/chronically ill people. Loved how the author shares the experiences of a variety of people - it definitely adds to their own story.

[Kate Laycoax · Rating 5 out of 5]

This was a book that was so good to me, particularly because it hit me so personally. I can really resonate with this because I am both on the spectrum (neurodivergent) and have chronic illness. To hear from not only the author, but other patients in the book as well, really meant a lot to me. It's so helpful because I know I am not alone and there are others like me who feel this way and live this life. Representation is so important, especially because autism is hard enough as it is, but mix in chronic illness (or vice versa) and the world becomes THAT much harder. Having a book where I can see myself in the author and the other contributors is very validating. I loved how the author explained everything, going from each system of the body, and gave tips on how we can understand ourselves better and take steps to help ourselves. This would definitely be a perfect book for those who are newly diagnosed and are trying to navigate the world.

Thank you to NetGalley and Jessica Kingsley Publishers for an eARC of this book.

[Crimson · Rating 4 out of 5]

Thank you NetGalley and Jessica Kingsley Publishers for this eARC in exchange for an honest review.

As someone who is ND with POTS and suspected MCAS, this was spot on. The author said they got a pamphlet for all their diagnoses (hey- you guys got pamphlets?!). I knew from the introduction that this was going to be a great book for me.

I loved the smaller, digestible sections within the chapters. Plenty of places to pause and take things in.

I found many helpful tidbits in here and the book itself was very affirming- my one and only complaint is that I wish there were more details/examples in some sections.