The #ActuallyAutistic Guide to Advocacy: Step-by-Step Advice on How to Ally and Speak Up with Autistic People and the Autism Community

by Jennifer Brunton, Jenna Gensic

The #ActuallyAutistic Guide to Advocacy takes an in-depth look at the key elements of effective, respectful, inclusive advocacy and allyship. Every topic was chosen, shaped, and informed by #ActuallyAutistic perspectives.

The step-by-step guide discusses various aspects of how autism is perceived, explores how best to speak up for individual needs, and introduces advocacy for the wider autistic community. Each step outlines one vital aspect of advocacy and allyship, such as emphasizing acceptance, avoiding assumptions and assuming competence. The advice and strategies laid out in this guide center the wisdom and experiences of Autistic people and enable the reader to confidently speak up with insight and understanding.

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

320 pages, Paperback

Published February 21, 2022

About the author

Author also writes under Lux Cunningham

Reviews

[Brianna · Rating 4 out of 5]

3.5 stars rounded up.

This book can be a helpful starting place for someone who is new to Autism advocacy and working with neurodivergent folks. I really appreciated how the authors included so many diverse Autistic perspectives. The downside to this book was unfortunately its redundancy. In the middle, it suffered from a lot of repetition around trusting neurodivergent voices and not imposing neurotypical standards and expectations. While this is certainly a huge portion of advocacy, I found myself wishing more time had been spent on intersectionality and racial, gender, and sexuality diversity in the Autistic community. This book is still a helpful starting point for neurotypicals looking to be better allies to the Autistic people in their lives, just prepare for a bit of repetition here and there.

[Debra · Rating 5 out of 5]

This book provided such insightful, practical advice. I am the parent of an autistic teenager, and I have read a lot of books about autism through the years, but this one spoke to me in a way that no other one has. It was accessible-useful explanations, clearly written, and expressing things from an angle I had not previously considered (though, believe me, I've given these issues a lot of thought!). Hearing the different voices and opinions in the book gave all of the practical advice meaning and authority, and it helped the suggestions make sense to me as a neurotypical parent of a neurodiverse young adult. The book was so respectful and it helped me to realize ways in which I too can be a more respectful and helpful advocate. I am so grateful for this book. I feel like it will have a semi-permanent spot on my nightstand and I will be consulting it for a long time.

[Carvill-Ziemer Kids · Rating 5 out of 5]

I loved the organization of this book by topic with reflection questions. And I loved how many autistic voices are featured.

As a parent of an autistic child, I'm always looking to the autistic community to learn more and better advocate for and with my child. Of course each person is different so having a wide range of voices is helpful. I appreciated the ways the authors both generalized and delved into nuance and difference between people. This is a book I will return to especially as my child enters new phases of life. It's also one I am going to recommend professionally to those who serve autistic people in their communities.

[Alison Jarvis · Rating 5 out of 5]

As the grandmother of an autistic 11-year-old boy, I have long been invested in understanding his needs and supporting him. I learned so much from this book, but perhaps most important was the insight I gained into my ill-conceived, ongoing attempts to help him "fit in"; make friends by what I can see now may be efforts that actually undermine his strengths and his individuality. Thank you to the authors for an extremely readable and comprehensive guide. I will keep it near.

[Gabrielle Hartley · Rating 5 out of 5]

Yeah so informative and interesting. I must read for anyone who wants to understand what it’s like to be and how to support Nuro atypical people. They are everywhere and deserve to be seen and heard for who they are beyond outer appearances! I absolutely cannot recommend enough!

[Shelley Âû · Rating 5 out of 5]

I absolutely love this book as an Autistic individual and some one who has worked in the Disability field for 20 years I agree with 98% of what was said. I really loved the stories from #ActuallyAutistic Individuals

[Melanie]

Read the first 150 pages, skimmed the rest, including all Summary Guidance, Reflection Questions, Advocacy Steps, and contributor bios.

Where to begin? The fact that this book never actually defines or describes autism ("intense interests" and "flapping/stimming" are invoked frequently, but the clinical definition is curiously absent)? The faulty Appeal to Authority that pervades this book? The idea that only #Actuallyautistic people are experts on autism, many of whom are self-diagnosed, even though they don't agree on anything and have wide-ranging experiences? The idea that a Neurotypical person exists? The idea that autism can be self-diagnosed, usually after reading one or two books? There are so many qualifiers in the introduction to this book that I was rolling my eyes before getting to Step 1. Find 100 people who have [a thing in common, be it neurodivergence or hair color or zip code] and get them to agree on how to live life with respect to that thing.

There are 9 Steps to Advocacy as described in this book:
1) Emphasize acceptance
2) Adopt a balanced perspective (autism is neither all good nor all bad)
3) Presume competence
4) Advocate for individuals
5) Advocate for the things that autistic people actually want (these things are widely varied)
6) Stay centered on the autistic person's needs and dreams
7) Include all autistic people (autistic experiences are as varied as non-autistic experiences)
8) Connect respectfully with actually autistic people
9) Put theory into practice

This book never actually defines or describes autism. It's really hard to encourage advocacy for a condition that you never adequately describe, particularly when so many of the people who are interviewed (including one of the authors) are self-diagnosed and yet have very different experiences. The etymology of autism means "morbid self-absorption," which, while sounding a bit offensive, doesn't actually seem inaccurate in this space.
In a way, this reminds me of other advocacy books, where there is an expectation that all non-(group) people are dimly viewed and self-righteously looked down upon as the outgroup. Or, while chiding the outgroup (in this case, the dreaded "Neurotypicals") not to treat autistic people as a monolith, they treat neurotypicals as a monolith. In fact, in the book, NT is used to describe people who aren't autistic, even if they're commonly considered neurodivergent, having serotonin disorders or ADHD or other processing/perception issues. IT would be more accurate to use the term "non-autistic" instead of "neurotypical."

There is a lot of forced teaming and a lot of forced outgrouping. Autism occurs on a spectrum, of which nearly all people exhibit at least one or two traits as described in the DSM-V, but the authors/contributors, many of whom weren't diagnosed until adulthood, reject the idea that most people are a bit autistic. At the same time, these contributors have a tendency to speak for all people with autism when describing their own lives and perspectives. There is also a lot of antagonism towards parents/caregivers of those with autism, like a parent raising a child with autism and advocating for the child's needs is somehow invalid because the parent does not have autism, and doubleplus if the parent wants their child to be "cured" or to be able to function in a neurotypical world.

There seem to be two camps when it comes to autism: the ones who think everything needs to be pathologized and treated so the kids will be "cured" or normal, and the camp that thinks everything needs to be left alone and the autistic should be empowered to be their authentic selves, regardless of the dangers and drawbacks. There are dangers in too much sheltering and dangers in not enough sheltering/supports and individual needs vary greatly.

Bottom line: treat all people as individuals and ask them about their needs and accommodations. Recognize that the #actuallyautistic people who are self-diagnosed may well not actually have autism, and, particularly if they were first diagnosed as adults, the label may be dubious at best. Consider that the loudest advocates require the least support and are unlikely to understand the perspectives of those who require much greater supports.

[Elizah · Rating 5 out of 5]

I love this book. It is very readable without "talking down". It will challenge your viewpoints and enable you to understand so much more about neurodiversity. This will be a great tool for educators, health professionals, and families of autistic persons. It will help you open your mind as well as communicate more effectively. My favorite non-fiction book in this category.

[Chantelle McNaught · Rating 5 out of 5]

I won this book from the giveaways on good reads and I could not be more thankful.

I know a few ND people and I feel as though this book opened my eyes to different ways of looking at certain situations.

A couple things I took away from reading this the first time is:

-You can't just make yourself an ally, you have to earn it.
-Happiness is different for everyone. Never assume what makes your happy will make someone else happy.
-Never assume someone wants to be normal or wants to fit in.

I loved reading this and I will be giving this book to a few people within my family to read as well.

If you've ever been uncertain about if you are helping or hindering an autistic person I strongly recommend reading this book. Not only does the book have a lot of great advice and insight it also directs you to other sources of information.

[Wayne K. · Rating 5 out of 5]

As a father of an adult son with profound non-verbal autism, Brunton and Gensic's discussion about the nine steps that families can and do rely on to help understand, cope with, and support those with autism was highly accurate to me. It is a readable and helpful guide about the widely varied components of autism. What stands out is the realistic and practical pointers for advocacy and obtaining social justice at the many stages and ages of loved ones with Autism spectrum disorder (ASD). The carefully designed compendium examines numerous concepts and pieces of how autism is comprehended and shows how to advocate for those on the spectrum effectively. I especially found the three stages and nine-step framework beneficial—from Step 1: Emphasize Acceptance to Step 9: Put Theory into Practice. The process steps are nicely thought out and expertly written. The guidance and approaches focus on the insight and encounters of people with autism and empower the reader to articulate their ideas with perceptiveness and awareness when advocating. The #ActuallyAutistic Guide to Advocacy is a social justice guide with a fresh perspective and clear voice for contemporary society, families, and individuals.

[Susan · Rating 4 out of 5]

Packed with solid information that should be required reading for anyone entering the advocacy arena, whether it's for a family member, friend, or because you feel it's the right thing to do. A lot of the lessons here can also be applied to Anti-Racism work as well as a reminder to not center yourself and to listen and uplift voices from the community you're wanting to support. Although (thankfully) I have already learned some of this, there were still really useful takeaways.

[Wendy Foster · Rating 5 out of 5]

This is a book I expect to return to again and again. It contained a wealth of information that I anticipate returning to frequently. Almost as soon as I finished it, I went back to re-read passages I found particularly insightful. The authors pack wide-ranging and in-depth actionable advice into this slim, readable volume.

[Fosca D'Acierno · Rating 5 out of 5]

As an educator, this book was a crucial and eye-opening read for me. I recommend it highly to everyone who wants to gain a deeper understand of how autism is perceived in our society and how we can all become better advocates and citizens.

[ImogenTV · Rating 5 out of 5]

This book is the encapsulation of ‘nothing about us without us’. A must read for disability advocates.

[Pug · Rating 2 out of 5]

Phew. I got all the way up to 66% through this book before I had to give up. I couldn't take it anymore. I guess it's got a lot of info and resources for people really digging in...? But to me it sounded repetitive and became redundant. This 300-page book could have been whittled down to a bumper sticker: treat everyone with respect and kindness. That the authors had to keep reminding me that autistic people were human beings with unique needs and interests was insulting. What, really???

And, if we're gonna go there with the inclusion talk: being labelled "neurotypical" feels a little insulting, as well. As though certain people are 'so typical' that they are indistinguishable from other typicals.

[Cynthia Parkhill · Rating 4 out of 5]

This book raises a lot of valid points, but I am concerned that it erases the experience of self-diagnosed autistic people by talking exclusively about people who have received a formal diagnosis. Maybe I missed something but nowhere in the index is a listing for "self-diagnosis" or a variant thereof. The index jumps from "schools" to "Sesame Street." And the lack of explicit reference seems odd considering bios that mention some of the contributors having self-diagnosed.

There is so much gatekeeping and gaslighting around who is legitimately autistic. When the authors talk about the importance of validating a diagnosis of autism by not minimizing it with statements like "We're all a little bit autistic," surely that point needs to be upheld all-the-more when a person lacks formal diagnosis. The passage in question could easily be revised to state that "the diagnosis of autism" includes self-identification.

[AD · Rating 4 out of 5]

After finishing I Will Die on This Hill I wanted to dive deeper into understanding Advocacy so I thought I would read The #actuallyAutitstic Guide to Advocacy by Jenna Gensic & Jennifer Brunton.

For me this book cements the importance of listening to and learning from those with lived experience. At the end of each chapter there are a number of thought provoking open questions to make you think about advocating in the right way and to challenge your thought process.

It also gives you things to think about when looking for organisations to work with and support. A bit of a reality check to leave your ego at the door and keep you aligned and open to continually learning and listening.

I think as a parent it will be a worthwhile read to make sure that when you are advocating for your children you are doing it in the right way. Listening to and learning from actually Autistic people and going to the right organisations for support.

I wasn’t sure about the book to begin with but I think that I have learned a lot from it. Time will tell on that I suppose.

For me I found I Will Die on This Hill resonated with me more. But that said this is still a worthwhile read which I will most likely return to again in the future.

[CM · Rating 5 out of 5]

As a parent of a neurodiverse teenager and as a professional who works with families with children requiring special education support, this book is extremely helpful in the advocacy journey. Highly recommend for neurodiverse families and those who support them.

[Daemon · Rating 5 out of 5]

The authors succeed in being truly inclusive and respectful, a genuinely difficult thing to achieve, and a true blessing when reading the work. A+