The Real Experts: Readings for Parents of Autistic Children is a great little anthology of short and accessible writings by autistic authors, assembled by editor Michelle Sutton for the benefit of families of autistic children and also for educators, therapists, and other professionals. 

The Real Experts is published by Autonomous Press, the independent publishing house I co-founded. 

The Real Experts is available directly from Autonomous Press, from online retailers like Amazon or Barnes & Noble (though it’s better for small publishers when you order from us directly), and from your coolest local bookstore if you ask them to carry it. 

The Real Experts includes my pieces What Is Autism? and This Is Autism, along with pieces by eleven other excellent autistic writers. I also wrote the Foreword – and here’s that Foreword now, as an appetizer for those of you who haven’t read the book yet…

This book is for parents of autistic children.

It’s also for grandparents, aunts and uncles, and other relatives – not to mention teachers, therapists, support staff, and anyone else involved in the care and upbringing of a young autistic person. This book will also be of value to scholars and researchers studying autism, and to academic faculty like myself who are involved in training the next generation of professionals in fields like psychology and education. But first and foremost, Michelle Sutton put this book together with her fellow parents in mind.

Every good and loving parent in the world faces the same question every day: How do I help my child to thrive?

Every time a truly good and loving parent makes any sort of parenting choice, however big or small – whether it’s choosing a school or choosing a bedtime story, choosing when to put a toddler down for a nap or choosing what rules and advice to give a teen about dating – that is the question we must answer as best we can, the question that guides our decisions, even if we never put it into words.

How do I help my child to thrive?

Any good parent can tell you that this question is endlessly challenging. No matter how many times we grapple with it and find what we hope is a good answer, a new situation is guaranteed to come along soon that requires us to grapple with it yet again and to find yet another answer. And sometimes we have to wait months or years or even decades to find out how good our answers were.

If your child is autistic, and you’re not autistic yourself, the question of how to help your child to thrive becomes a hundred times harder. But this is not because being autistic is in any way incompatible with thriving. Rest assured that autistic people can thrive, and do thrive. Autistic people, including your child, can have good lives full of joy and love and meaningful connection and creative fulfillment.

So why is it so hard to determine how to help your autistic child to thrive? Most of the difficulty can be traced to three factors.

The first factor is that your child’s sensory experience of the world is fundamentally different from yours, and the way your child’s mind works is fundamentally different from yours. So different that it may be nigh-impossible for you to imagine what your child experiences, senses, thinks, knows, or feels, or what your child is trying to communicate, or why your child is doing some particular thing . And this, of course, can make it quite difficult to figure out what your child needs. Fortunately, the insights of autistic adults can be of great help in this regard. Autistic adults have been there. They have insider knowledge.

The second factor is that there’s so much misinformation and bad advice about autism out there. Many of the standard “expert” or “professional” approaches to autism are badly misguided and rooted in ignorance. For instance, there are certain “therapies” that are widely recommended for autistic children but that are actually harmful and traumatizing (the most widespread of these, Applied Behavior Analysis or ABA, is addressed in some of the writings in this book). When so many of the “experts” are so utterly wrong and so confident in their prejudices and misinformation, it’s hard to know who to listen to. Here, again, the insights and insider knowledge of autistic adults are invaluable.

The third factor is that because the minds, interests, experiences, abilities, and needs of autistic people are different from those of non-autistic people, “thriving” also looks different in autistic people than it does in non-autistic people. Health, happiness, success, personal fulfillment, good relationships, psychological well-being, a high quality of life – all of these things are possible for autistic people, including your child, but the autistic versions of these things are often quite different from the non-autistic versions.

When you’re trying to help a “typical” child to thrive, the society in which you live provides you with many models of what a thriving child looks like, and many models of successful, thriving adultood. These models provide some idea of what you’re aiming for, some idea of what you want to help your child to become. But parents rarely have access to models of what a thriving autistic child looks like, or a successful, thriving autistic adult. So how do you know if your autistic child is on the right track, developmentally, when the “right track” for your child might be vastly different from the established societal standards of what the “right track” looks like?

Most non-autistic “experts” are unhelpful about this sort of thing, because they regard autism as intrinsically unhealthy, intrinsically a “wrong track.” Most non-autistic “experts” think that key to helping an autistic person thrive is to try to make them non-autistic, or to try to make them as “indistinguishable” from a non-autistic person as possible. Making an autistic person into a non-autistic person simply can’t be done (though sadly, many parents fall prey to unscrupulous quacks and cultish organizations selling phony and expensive “treatments” for autism). And trying to make an autistic person outwardly “indistinguishable” from a non-autistic person ultimately does the autistic person far more harm than good, as you’ll see in some of the personal accounts in this book.

So when it comes to the question of what the path to a good life might look like for your autistic child, autistic adults can yet again offer crucial insight, and can also serve as inspiring examples.

Michelle Sutton, who put this book together, is the mother of six children, two of whom are autistic. Listening to the insights and experiences of autistic adults has helped Michelle to help her autistic children to thrive.

The dozen autistic people who have contributed their writings to this book (and I’m honored to be one of them) are all thriving, in our own ways. Most of us had a hard time getting to the point where we were thriving, and many of us are still recovering from the hard times we had. We accepted Michelle’s invitation to contribute to this book because we want the next generation of autistic children, including your child, to have an easier time. Like you, we want your child to thrive.




Autistic Musicking

June 23, 2015

Musicologist Andrew Dell’Antonio and disability & education scholar Elizabeth J. “Ibby” Grace (who is one of my fellow editors at Autonomous Press) are collaborating on a project (will it be a paper? a monograph? a book? an action movie?) about autism and musicking, and I’m one of the autistic people they interviewed as part of their research.

And what is musicking? According to the information Andrew and Ibby sent me in preparation for the interview, musicking is a term coined by a musicologist named Christopher Small, and discussed in Small’s book Musicking: The Meaning of Performance and Listening (1998). Musicking is music as a verb: to music. To music, as I understand it, is to participate in music in any way: you’re musicking when you play music, sing it or sing along with it, compose it, dance to it, share it, help to make it happen, create art inspired or informed by it, allow it to inform the way you move or interact or live… if it’s a way of engaging with music, it’s musicking.

Below is the stuff I said about Autistic musicking during the interview. The interview took the form of an extended Facebook chat session, which included a lot of rapid-fire chatter and questions and joking around and personal interjections like “Hey, me too!” or “Good question!” from all of us. I’ve edited all that stuff out, though I’ve left in a few of the questions that Andrew and Ibby asked me (because some of my answers make more sense if you know what questions I’m responding to).

I’m looking forward to seeing Andrew and Ibby’s work-in-progress as it progresses further. They presented some initial bits and pieces at the 2015 Society for Disability Studies conference, including some quotes from the interview below. 

Q: What makes sound more or less pleasurable for you?

Sounds are more pleasurable for me if they’re in harmony with everything else that’s going on, or if I’m in a position to work in harmony with the sound. So the sudden sound of someone using a power tool is never pleasurable, because it rips into the flow of whatever’s already going on. But good music, even if it’s as loud as a power tool or starts as suddenly, can be pleasurable because I can incorporate it into the groove of what I’m doing and how I’m moving.

My sensory channels aren’t separate, it’s all part of one complex multifaceted experience, so the soundtrack has to work in harmony with everything else.

Q: Can you say more about the “complex multifaceted experience”? Does it involve synesthesia?

Yes, it’s all about synesthesia. Because I haven’t experienced anyone else’s sensory and cognitive processing, I can’t clearly separate what aspects of my experience constitute synesthesia, and what aspects are a result of my particular cognitive processing of my sensory experience.

A further challenge in talking about it is that music affects me emotionally, but about half of the emotions I experience are Autistic emotions for which there are no words in neurotypical languages. And it’s also hard to draw a clear boundary between “inspired and emotionally stirred by the music” and “sound/concept/emotion synesthesia.”

I find that terms like “sound/color synesthesia” don’t really do justice to the complexity of my experience. I have “everything/everything else synesthesia.” Just one big gestalt experience.

Q: So acknowledging the inadequacy of neurotypical language to describe Autistic multisensory experience, from your perspective, is it even useful to separate “musicking” as a distinct mode of engagement from the global Autistic experiential gestalt?

Yes, I think it’s still useful to think of musicking as a distinct realm of activity. One just needs to remember that the boundaries that separate realms of activity and experience (or areas of academic study) are fluid and permeable.

The boundary between “musicking” as a description of a specific field of activity, and “musicking” as a metaphor for other activities, is particularly soft and permeable.

Am I musicking if I write a story? One can say that composing a story is like composing a piece of music, and that’s a metaphor. But what if listening to music is an important part of my creative process as a writer? What if, when I write a story, I’m often thinking about its soundtrack? What if I drop little song references into my stories to try to put the music into the reader’s head as well?

At what point does writing become musicking actually as well as metaphorically? Fuzzy boundaries.

All of the above is part of my personal experience of writing stories, by the way – not hypothetical. I love story, and music tends to convey story to me.

Songs and song lyrics play an important role in my cognitive experience. They’re a rich source of cognitive/social scripts. I want to clarify that, because in the context of autism the term “social scripts” is often used to mean “rote learning of social protocols for the purpose of passing for neurotypical” – and that’s absolutely not what I’m talking about.

What I mean by cognitive/social scripts is that I don’t think in words in the sense of having an “internal monologue” the way many people seem to – but I can think in songs. So when I have an intuition or pick up on a “vibe,” and my unconscious mind needs to communicate something about it to my conscious mind, it often happens in the form of a song popping into my head.

Here’s an example of how it works for me: when I was getting my degree in Counseling Psychotherapy, the degree program included a year of clinical practicum that involved counseling clients in a counseling center. Songs would pop into my head when working with clients, and the songs were hints about the client – things I was picking up about them unconsciously.

My favorite one was when I met a client for the very first time – literally the first time I laid eyes on her – and the song “Sing” by the Dresden Dolls popped into my head, loud and clear. It’s a song about reclaiming one’s voice, about overcoming the fear of speaking/singing out. And it turned out that that was exactly the issue that the client needed to work on.

Q: Do you think there can be a culturally Autistic (or more broadly neurodivergent) approach/approaches to musicking?

I think there are potentially as many distinctively neurodivergent approaches to musicking as there are neurodivergent individuals. Even just focusing on Autistic individuals, the range of experiences and potential approaches is so vast.

So I don’t think there will ever be one particular Autistic cultural approach or style, when it comes to musicking. Just look at the many Autistic people already making music, or the historical figures in music who were probably Autistic. Look at how different their various styles and approaches are/were.

I think the key element in any Autistic cultural approach to musicking would simply have to be the embracing of variety. An Autistic culture of musicking would embrace the variety of ways of musicking, and also the variety of experiences and responses to music.

One reason I was drawn to particular genres of music as a teen and young adult – hard rock, metal, punk, ska – is that the subcultures built around these genres are accepting of certain types of embodied participation in musicking.

More simply put: kids at a metal concert physically rock like they’re Autistic. They’re even referred to as “headbangers.” I was drawn to subcultures in which it was socially acceptable for me to move to music the way I naturally move to music.

Now, Glenn Gould and Thelonius Monk could be openly Autistic in the way they moved when playing the piano onstage. But you’re not allowed to move to the music like Glenn Gould when you’re in the audience at a Bach recital.

So an Autistic culture of musicking wouldn’t be about a particular genre, but it would include acceptance (and celebration) of stimming by audience members. At a metal show, if the audience is stimming, that’s like applause – it’s a sign to the band that they’ve hit a good groove. In an Autistic culture of music, this would be the case in every musical genre.





Foreword to Defiant

May 30, 2015

Below is the foreword that I wrote for Michael Scott Monje Jr.’s novel Defiant. Defiant is one of the first titles to be published by Autonomous Press, the independent publishing house I co-founded with Monje, Elizabeth “Ibby” Grace, Bridget Allen, and Corbett O’Toole. It’s part of the same epic series-in-progress as Monje’s earlier novel Nothing Is Right […]

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PTSD on Fury Road

May 26, 2015

I saw Mad Max: Fury Road yesterday. It’s every bit as good as all the most positive reviews imply. Quite simply the best action movie I’ve ever seen. And yes, overtly feminist. And yes, amazing badass disabled woman heroine. One other amazing thing I haven’t yet seen mentioned in any review is the explicit and […]

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Neuroqueer: An Introduction

May 2, 2015

The term neuroqueer was coined independently and more or less simultaneously by Elizabeth J. (Ibby) Grace, Michael Scott Monje Jr., and myself. Having coined it, all three of us managed to spend a few years not getting around to using it in any published work, even though the set of concepts and practices represented by the term came […]

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Neurotypical Psychotherapists and Neurodivergent Clients

December 3, 2014

I’m often asked if I have any words of advice for psychotherapists and other professionals, on working with clients who are autistic and/or otherwise neurodivergent.  Why, yes. Yes I do. And I’ve been meaning for some time to type up some of those words of advice and make them publicly available. The push that I needed finally came from Sarah […]

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Toward a Neurocosmopolitan Society

October 1, 2014

In my previous post, Autism, Aikido, and Systems-Oriented Cognition, I published my answer to a question that the fabulous Steve Silberman asked me as part of the research for his book, Neurotribes: The Legacy of Autism and the Future of Neurodiversity.  Below is another excerpt from that same conversation with Steve – my answers to two more of […]

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Autism, Aikido, and Systems-Oriented Cognition

September 29, 2014

Steve Silberman is a journalist and wonderful human being who’s done some superb writing on autism and neurodiversity. He’s currently working on a book entitled NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, which I’m certainly looking forward to reading.  As part of the research for his book, Steve visited me at my aikido dojo, […]

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Neurodiversity: Some Basic Terms & Definitions

September 27, 2014

New paradigms often require a bit of new language. This is certainly the case with the neurodiversity paradigm – even the word neurodiversity itself is still relatively new, dating back only to the late 1990s. I see many people – scholars, journalists, bloggers, internet commenters, and even people who identify as neurodiversity activists – get confused about the […]

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The Veiled Oasis

September 15, 2014

In my previous entry, I posted an introduction and link to The Hyperlexicon, an online hypertext labyrinth that I created in 2006, as an undergraduate student in the Interdisciplinary Studies program at California Institute of Integral Studies. In December of 2010, I returned to the hypertext medium that I’d used to create The Hyperlexicon, and created a […]

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