Monday, October 31, 2016

Electroconvulsive Therapy and Autism: Caution Advised

Shannon Des Roches Rosa 

Lightning Strike
Photo © Skyseeker, on Flickr. Creative Commons license.
[image: lightning striking a cityscape, at night.]
Spectrum News recently published How ‘Shock Therapy’ is Saving Some Children with Autism. The article was also published in The Atlantic.

Like many of you, my initial reaction was "WTF." Which, to be fair, was in part primed by the the misinformation spread by existing autism and electroconvulsive therapy (ECT) proponents. But I am always worried about articles about "treatments" for autistic people who self-injure, because of the focus on treatments rather than sourcing out causes. So here's what I think you should know about reading articles like this, and about ECT and autism in general.

Spectrum is dedicated to covering developing autism science, and articles of interest to the autism science and research communities. Ideally, those readers already understand that there is very little research into autism and ECT, that we don't know nearly enough about autistic brain development to anticipate the kind of effects ECT could have, and that ECT as a treatment for autistic self-injury and catatonia is experimental. They will notice that interviewed scientists and clinicians are begging for more research. They will read closely, and take note of statements near the end such as, "this is for kids who are going to be dead if they’re not restrained," and, "The numbers are small, no more than 50 children treated in the U.S. in any given year, although no one knows the exact figure." They will be reassured by how many safeguards and hurdles exist to accessing ECT for autistic people. Again, ideally.

When Spectrum articles are republished in mainstream outlets like The Atlantic, however, many readers won't know anything about autism, except negative stereotypes and myths -- which for them this article will likely compound, despite its many caveats. And as the moderator of a reasonably-sized autism community and a participant in several large online autism parenting groups, I guarantee that far too many families still approach autism from a "treat" rather than "understand" perspective -- which means the takeaway for some parents of autistic kids will be "ECT works for autism," and many will try to pursue ECT outside of controlled conditions. This worries me, greatly, because focusing on "solutions" undercuts much-needed understanding and acceptance efforts, especially for the high-support autistic people in question.

If you find yourself in discussions about the Spectrum or Atlantic article specifically, or about ECT and autism in general, here are the points you need to address:
  • When we talk about autistic people who self-injure, we always have to consider medical or other reasons why self-injury is occurring first, before resorting to treatments. Always. It is very worrying to think that ECT may be stopping autistic people's "behaviors," but not addressing the factors behind those behaviors, such as chronic pain, illness, or sensory onslaught.
  • Articles about treatments for autistic people really should include accounts from autistic people who have experienced said treatments. With consent. Otherwise, side-eye.
  • We don't know enough about the development of autistic brains to know how the common side effects of ECT, such as memory loss, will affect the autistic people in question. We do know that non-speaking autistic writer Carly Fleischmann lost her ability to communicate following ECT, was traumatized by the experience, and is only now recovering.
  • ECT does have uses, such as for treating intractable depression. However, again, there is very little research into ECT as a treatment for autistic people.
  • Electroconvulsive therapy is different from the electroshock aversives used at the Judge Rotenberg Center. Confusing the two is understandable but not helpful, not when critiquing ECT and autism articles.
  • If -- and this is a guarded if -- ECT is appropriate for autistic people who experience self-injury, it is only appropriate for a very small number of them.
I realize that setting a high-support autistic person up with the best possible conditions, understanding, and acceptance doesn't fix everything, because of personal experience -- but families really do need more information about why autistic people self-injure, and about the state of autism and ECT research, before absorbing and acting on autism and ECT articles. Hopefully this will help.

Thursday, October 27, 2016

Autism and Normalisation

Oolong
oolong.co.uk

Normalisation is the process of making or becoming normal. ‘Normal’ can mean a great many things in different contexts, but here I mean it in a social sense: to be normal is to conform to society’s norms.

You Will Be Assimilated
[image: black-and-white illustration
of a Borg drone, by Sonya Hallett]
Within this context, there are two very different meanings of ‘normalisation’: to make normal, or to become normal; to normalise the individual, or what makes them stand out. Normalisation in the first sense is what the Borg does in Star Trek: individuals are assimilated by having their rough edges, their deviations from what is expected, removed, or hidden.

Normalisation in the second sense is what the writers repeatedly do in Star Trek: groups once seen as monstrously beyond the pale, like the Klingons, are slowly seen to have more in common with ordinary humans than it first appeared, and to be capable of existing fruitfully in society once certain accommodations are in place.

Normalisation of the individual is what interventions for autistic people tend to aim at. If autists can be taught to make socially acceptable levels of eye contact, to keep from stimming too obviously and generally expressing ourselves in unacceptable ways, perhaps we can co-exist with normal humans in society without causing too much disruption.

There is a high price to pay for assimilation of the individual, even if this process is seen to be successful, and the things that make autists’ ways of thinking and being fundamentally different from those of the neurotypical population are always going to remain, however well we learn to bury them. For all these reasons, normalisation of the individual is not something autistic advocates tend to push for. Normalisation of autism is a much more appealing prospect, although I’m not aware of anyone else contrasting the two like this.

Society has many ways of dealing with deviation, each with advantages and disadvantages. Anything short of full acceptance is a kind of othering, and always dehumanising to some extent. Usually, for something to be accepted, it needs to be seen as within the bounds of normality.

Doesn’t a Klingon deserve love (par'Mach)?
[image: black-and-white illustration
of a Klingon warrior, by Sonya Hallett]
Any given way of being different often passes through phases of being dealt with differently. Homosexuality, for example was demonised, criminalised, medicalised and exoticised, in turn or concurrently, before society at large started to accept it; nowadays it is well on the way to full normalisation. Autism is sometimes demonised, quite often exoticised and still overwhelmingly medicalised. As more and more people are identified as being on the spectrum, and autistic advocates and others pull us towards a better understanding of what autism means, there is perhaps a trend towards its normalisation.

The neurodiversity paradigm is key here. Different people have always thought differently, and some people have always had trouble fitting in, and the language and study of autism have helped us to start understanding why that is and what it means. Some brains are autistic because that is the way humans have evolved, not just because some brains come out ‘wrong.’ Autistic people tend to be better at some things than allistic (non-autistic) people, and it is very likely that the diversity of brains and the diversity of ways of thinking that follows from it are a positive boon to humankind at large. If autism is indeed a part of the normal variation of human minds, it must surely be a matter of time before some forms of it at least are accepted as such; their normalisation is inevitable.

However, the limits of this normalisation are less clear. The medicalisation of Asperger’s-type autism is a relatively recent phenomenon, and while aspies have presumably always existed, and largely been more-or-less accepted, we have probably always been seen as weird. We probably always will be, in societies where a large majority are not autistic, so the question is to what extent being weird like that is accepted as part of normality. If we are seen to stand on ‘the outer fringes of normality,’ so be it  --  in a society that respects eccentricity, the periphery needn’t be a bad place to be.

Things are much harder for people whose autism makes them stand out that much more, though  --  which includes a lot of people who manage to stand out less at other times. Full normalisation of autism would require a substantially broader concept of ‘normality.’ It would mean acceptance of autistic people who are non-speaking, an understanding of meltdowns, and general awareness of the dangers of sensory overload. The population at large would need to learn not to be unsettled by visible stimming, not to freak out when someone doesn’t make eye contact or want to be touched, to take a more relaxed attitude to misunderstandings arising from literal-mindedness.

Perhaps this is a lot to ask? Certainly we have a long way to go, but maybe it’s not unrealistic, with increasing visibility and consistent challenges to othering. It might even work out well for the rest of the population  --  particularly for other disabled, or mentally ill and otherwise marginalised people  --  if we were all more aware and accepting of difference.

----

A version of this essay was previously published at Medium.

Sunday, October 23, 2016

An Open Letter from an Autistic Child in Meltdown, Written by an Autistic Adult Who Still Melts Down From Time to Time

A TPGA community member recently asked us what we thought of the McSweeney's post An Open Letter To Anyone Who Has Experienced My Son’s Meltdowns, which is (obviously) written from a parent's perspective. Well, we were mostly sad. McSweeney's is typically a delight, but we consider the letter to be yet another example of How The Progressive Media Sells Out Autistic People. So we asked Sparrow Rose Jones, an autistic writer, to come up with an autistic perspective version.

We hope you'll find Sparrow's letter useful, and will leave copies atop the keyboards or devices of those who need to read it.



Sparrow Rose Jones
www.unstrangemind.com

Lupin Hill Water Balloon Toss
Photo: Chris Yarzab / Creative Commons license
[Image: young boy with a dark flattop haircut
sitting under a tree by himself and crying.]
An Open Letter from an Autistic Child in Meltdown, Written by an Autistic Adult Who Still Melts Down From Time to Time

To Anyone Who Is Concerned,

Thank you for being concerned; it means you care about me and my family. But I notice you don’t understand what is happening, so I wanted to let you know why I am doing these things that got you concerned.

I am probably...
  1.  Being loud (or possibly WAY too quiet).
  2.  Trying to hide.
  3.  Running away.
  4.  Moving in ways that look unfamiliar to you.
  5.  Moving in ways that you don’t understand.
I am not...
  1.  Misbehaving.
  2.  Trying to bother you.
  3.  Spoiled.
  4.  Badly brought up.
  5.  Criminal.
I am Autistic and that means I...
  1.  Struggle getting my needs met.
  2.  Feel overwhelmed by too much sensory or emotional input.
  3.  Feel powerless in a frightening and chaotic world.
  4.  Have a hard time with emotional self-regulation and self-care.
  5.  Need your understanding and accommodation. 
I wish you wouldn’t judge me or my parents harshly right now because...
  1.  I am having a really hard time and will need lots of recovery time afterward.
  2.  Meltdowns are painful and embarrassing for me, even if you can’t see that.
  3.  My parents are good people who are trying to help me the best they know how.
  4.  You have no idea how hard I do try and how much I do succeed every day.
  5.  We all tried to avoid this and are all feeling really bad that I got this stressed anyway.
You can best help me by...
  1.  Not staring at me or my family; we feel bad enough already.
  2.  Not touching me; I’m already coping with so much and your touch is too much.
  3.  Not making nasty comments to us or to other people in our hearing.
  4.  Helping me and my family safely move to a more private place if possible.
  5.  Being compassionate with us all for the rough time we’re having.
If you want to help prevent this from happening again...
  1.  Learn to recognize my signs of stress and help me get out of difficult situations.
  2.  Don’t think of stress-prevention as “coddling” me but rather as necessary care.
  3.  Let me take new situations at my own pace, even when it feels painfully slow to you.
  4.  Don’t over-expose me to stress, thinking I will “just get used to it” that way.
  5.  Be willing to change sounds and lights or number of people to help me feel safer.
If I ask a lot of questions...
  1.  I’m not trying to pester you; please listen to me, even if it’s the same question repeatedly.
  2.  It’s even more important to listen when it is the same question repeatedly.
  3.  My questions are to help me understand the world and feel safe. Help me with that.
  4.  Many questions can mean I’m eager but can also be a sign of stress; learn to discern.
  5.  Feeling ignored when I ask questions can build up to a meltdown level of stress.
When I melt down or otherwise struggle to regulate myself at your event...
  1.  It doesn’t mean I don’t love you. I can love you tons and still not be able to keep control.
  2.  It doesn’t mean I didn’t want to come. I can get overwhelmed doing things I really like.
  3.  It doesn’t mean I’m not grateful to be there. Meltdown is just so big it takes over for a bit.
  4.  It doesn’t mean I don’t want to come back. Maybe when there are fewer people?
  5.  I didn’t mean to ruin your event. Try not to make me or my family feel bad about it.
You might think I am old enough to be able to control “this kind of behavior,” but...
  1.  My nervous system is developing on a different timetable from other people my age.
  2.  A meltdown is like a seizure or vomiting: willpower and discipline will not prevent it.
  3.  If I am a teen or adult, please don’t call me a child or kid because I still meltdown.
  4.  I feel terrible during and for a long time after a meltdown; if I could stop them, I would.
  5.  Being able to do something else “beyond my years” doesn’t change my nervous system.
When people judge me and my family because I have meltdowns, I feel...
  1.  Like a burden (and that is a horrible feeling I hope you never experience).
  2.  Ashamed because of who I am and things outside my control.
  3.  Frightened that I might be a bad person who hurts others.
  4.  Sad and angry that I struggle with a world that is so difficult and unforgiving.
  5.  Like no one understands how hard I am trying to be a good, grown-up person.
Thank you for listening to me and trying to be more understanding, accepting, and helpful. I know you are afraid you will do or say something wrong, but the fact that you feel that way is a good sign. It means you are trying to be kind and helpful and your intentions will go a long way. Along with your heart-felt intention to do the right thing, learn more about autism -- especially through reading the words of Autistic people who live this reality every day of our lives. The more  you know, the more confident you will be the next time you see and hear someone having a meltdown.

Above all, assume best intentions and strongest efforts on my part and on the part of my family, friends, and others who are with me. Follow my lead and, when I am too stressed out to help you help me, follow the lead of those who know me best. When you help me cope with a meltdown and when you help create an environment that helps me avoid meltdowns, you are helping to build a kinder, gentler world that has room for everyone, no matter what kind of nervous system they have. That is a great thing you are doing and you should be pleased that you are part of something so grand and loving.
  1.  Thank you for recognizing my value,
  2.  Thank you for being a person of value,
  3.  Thank you for caring about Autistic people,
  4.  Thank you for caring about me,
  5.  Thank you,
A bewildered and completely stressed-out Autistic who will hopefully be feeling much better soon.

Monday, October 3, 2016

The “Out-of-Sync” Child Grows Up: An Autistic Perspective

Sara M. Acevedo

[image: Book cover of The Out-of-Sync
Child Grows Up: Title in teal text, on
background photo of five older kids
running across a field, from behind.]
The Out-of-Sync Child Grows Up is the newest book from Carol Stock Kranowitz in her "Out-of-Sync" Child series. Subtitled "Coping With Sensory Processing Disorder in the Adolescent and Young Adult Years," the book focuses on the everyday experiences of parents, caregivers, and medical professionals who support adolescents and young adults marked oppressively by diagnoses like Sensory Processing Disorder (SPD). Although a significant number of the concepts and practices included in this book are discredited and marked as abusive by autistic and other neurodivergent people ourselves, the book has received substantial praise from non-neurodivergent authorities in the therapeutic professions, as well as from clinicians, parents, and educators. The book has also been praised by The Children’s Hospital in Boston, and contributors of magazines such as Brain, Child and Exceptional Parent.

The literary panorama in this field has changed dramatically, compared to the late 1990s when the first Out-of-Sync Child book was published. Neurodivergent authors, and our political companions, have taken a firm stance against such single-handed approaches. Under the umbrella of the Neurodiversity Movement, an increasing amount of important literature from autistics and otherwise neurodivergent authors has been published in the past few years, including Sparrow Rose Jones, Michelle Sutton, and Amy Sequenzia and Elizabeth J Grace. In like manner, social justice-oriented blogs written by autistics and otherwise neurodivergent people -- especially authors focusing on the intersections of race, class, gender expression, sexual orientation, disability, and ethnicity -- have received widespread acclaim in the various disability communities, both in the United States and abroad. Autistic Hoya, Sonia Boué, ACAT: Ala Costa Adult Transition Program, and Neurocosmopolitanism are among some of the leading contributors in the blogosphere today. Both the books and the blogs amplify and prioritize the first-hand lived experiences of historically misrepresented neurodivergent communities, while disproving medical narratives and misconceptions around Neurodiversity. They do so by providing well-informed, well-researched, and politicized literature centering personal narratives -- starting with our own stories.

Given the number of autistic and neurodivergent resources and experts available, it is distressing and problematic when books like The Out-of-Sync Child Grows Up continue to be written, published, and acclaimed by neurotypical professionals, without the input of neurodivergent people. Some would argue that these are inaccurate conjectures and that the stories of neurodivergent adults are indeed included in this volume. Although many such stories are included in the form of vignettes, the thematic structure and the content are exclusively geared toward parents, educators, therapists, and caregivers.

On several occasions, the author addresses a selected audience by insisting on the necessity of providing them (the family, the teachers, the therapists) with strategies "to cope" and "to survive" their sibling/student/patient’s "out-of-sync" behavior. One of the primary ethical concerns when neurodivergent people are not seen as the primary audience for books written about us (without us) is that the "noble" task of "bringing in" our voices becomes lost in the pages that erase us. Used this way, our stories become the crux of an un-narrative of sorts -- a narrative that uses our voices to further the well being of those around us, but not necessarily our own well-being.

The language used in this book is also problematic. As noted above, the thematic structure and content of The Out-of-Sync Child Grows Up are geared toward a specific audience: parents, teachers, therapists, clinicians, and caregivers. And as the title indicates, the motivation for engaging with these groups pivots on the belief that neurodivergent children, youth, and adults are inherently ‘out-of-sync’ with the world around us -- and that it is us who must adapt to “typical” inhospitable environments and conform to “normal” behaviors.

This belief system, which is based in pathological ideas of cognitive and bodily difference, reinforces negative stereotypes and attitudes toward those of us who are targeted by it in the everyday. More worrisome is the fact that these attitudes are inevitably connected to people’s violent responses to us in shared spaces (at school, our work place, public transportation, health care facilities, grocery stores, and other arenas). Words such as “epidemic,” used casually in this book to refer to the “proliferation” of people diagnosed with some form of sensory “disorder,” have proven to interfere with and taint our interactions in the social world. The very term “disorder,” which is a staple of the book, champions a false idea that the world today is perfectly harmonious, and that neurodivergent embodiment alters the "peace" of socially unjust environments. Overall, the language employed in this book demonstrates substantial disconnection between the work of neurotypical “professionals,” and that of actual neurodivergent people. An important oversight is that many neurodivergent authors are both personally and professionally proficient in all areas in which this book claims to be relevant.

In closing I offer three questions that remain unanswered in this book: Why is there no mention to the barriers and attitudes that seek to assimilate us according to typical ways of behaving? Why does this book erase critical approaches developed by professionals in the neurodivergent community? And finally, why does this book fail to challenge the many ways in which the world refuses to adapt to us?