November 1, 2017

Autistics Speaking Day 2017: What I would say to autistic people who want a cure

Posted in Uncategorized tagged , , , , at 2:12 am by chavisory

 

ASDay 2017

Autistics Speaking Day was founded several years ago in response to a particularly ill-conceived charity campaign, as a way of resisting the narrative that we are or should be silent or non-communicative. We’ve utilized it, largely, to talk and write about the truths of our lives and refute common misconceptions to a largely non-autistic audience.

It has been less focused on autistic people speaking to each other. That’s what I’m hoping to do today.

Recently I was asked, in the context of a broader conversation on Twitter about the foundational principles of neurodiversity, what I would say to autistic people who do want a cure or support the development of a cure for autism. This post is adapted from that discussion. I’m not sure it’s what the person who asked me expected, and I’m not sure how many people who fit that description might ever read this, but, well, this is what I would say.

1.  You have a right to your feelings. I’m not going to tell you that you shouldn’t think or feel this way. I’m not going to tell you that you only want this because of “internalized ableism.” I’ve never found attempts to argue other people out of their own feelings very effective, and I really hate it when other people try to tell me what I feel and why.

You have a right to feel the way you do about your own life. I’m sorry if you’ve encountered autistic communities where it was suggested that that wasn’t true.

I think too many of us spend our lives being told that by too many other people. It’s not right, and I’m not going to do it.

2.  However, your feelings and wishes are no more real and genuine, or more authentic an experience of autism, than mine are. I’m not sugarcoating the experience of autism when I talk about why I oppose cure-based research and favor acceptance; I’m telling the truth about conclusions I’ve come to from my own experiences as well as a lot of listening to other people from all sides of this debate. And it would be a mistake to assume that those experiences were easy or mild just because I have not come to the same conclusions that you have. Chimamanda Ngozi Adichie discusses “the danger of the single story” when the single story is a stereotype imposed from outside a culture or marginalized group. But I think one of the biggest dangers that the culture of the autistic community faces is the allure of a single story told from within.

Neurodiversity advocates get told a lot that we “don’t speak for all autistic people.” That’s true.

Neither do you.

3.  I actually think you should have a right to access any treatment or therapy (within certain standards of demonstrated safety and effectiveness that any drug or medical device is required, for good reasons, to meet in this country) that you and your health care providers think might make your life better or more comfortable. Like all of us should.

People who oppose or who do not personally desire a cure are not just the people who have everything easy, who have no real problems. We want our medical issues and other challenges taken seriously.

We just think they’re a poor excuse for why people like us shouldn’t exist at all.

4.  But a true cure for autism (that doesn’t consist of eugenic abortion based on genetic profile) is not only something that we are nowhere even remotely close to achieving, but seems, to me at least, increasingly unlikely to be achievable in light of current research. Autism isn’t something located in one part of the brain. In the vast majority of cases, it’s not attributable to a single gene or even to a small number of genes, or to any discernible damage or definite pathology, but involves differences in how the brain matures over time and processes information in complex and subtle ways.

Serious attempts at a cure, to date, have tended to be ethical and human rights catastrophes.

5.  I don’t say that to make you hopeless. I say it to strongly suggest that you not wait for a very hypothetical future in which you might be able to turn yourself non-autistic in order to try to be happier. To find the things that make you happy or satisfied and follow those things wherever they lead. Because if you’ve put all of your hopes for joy or contentment with your life in the basket of a potential cure, then you’ve already made your decision in a way that is very unlikely to have the resolution you want.

6.  In any way and to any degree that you can, get out of bad or incompatible environments. They can really easily make you feel like the problem when you’re not.

When you have, for a really long time, been surrounded by people who make everything about you into a problem, or only ever been in environments that sent the message that everything you want but can’t have is because of autism, then it can be very, very difficult to tell the difference between artificial, arbitrary barriers, and obstacles actually imposed by autism itself. And those messages, those arbitrary, imposed barriers, are very, very prevalent in our society and in a lot of the ways that our families, teachers, healthcare professionals, potential employers, and other people who have a lot of power in our lives, are taught to see and treat autistic people.

Those things aren’t just natural, inevitable consequences of being autistic, and learning how to recognize and challenge them might not make you change your mind, but life can be a lot more livable.

7.  There are ways in which I think the neurodiversity community could do a lot better for all of us.

I think we need to have more room for people who don’t necessarily feel prideful or self-accepting, who feel ambivalently, who are still coming to terms with difficult or ambivalent personal histories.

I think we need more room for people to admit to struggling, both with acceptance and with the pragmatic realities of being autistic.

I think we need to remember that neurodiversity is about the conviction that autistic and other neurodivergent people are truly and wholly human, with everything that that entails, that our existence is natural and innate to human biodiversity, and that it would be wrong to try to eliminate autism and autistic traits from the fabric of humanity; and not about feeling 100% positive about our lives or identities at every given moment.

That’s not something that’s expected of typically-developing, non-disabled humans in order to justify their continued existence.

I also think there are compromises we rightfully will not make. That the neurodiversity movement for the most part does not engage or condone “Well, I don’t need a cure and people like you might not need a cure, but low-functioning people do” rhetoric is not because we don’t understand how disabling autism can be. Indeed, some of the pioneers of the neurodiversity movement were and are very significantly disabled people. It’s because we believe that autistic people are real and whole people, no matter the intensity of their disabilities or their support needs, and that all of us have a right to our own thoughts and feelings and decisions about our lives. That if we’re serious about honoring diversity, we don’t get to say “We’re okay and intrinsically valuable the way we are, but people like you aren’t.”

There are a lot of things we could do better to find common ground with autistic people whose goals and desires differ from our own. That we won’t do that isn’t one of them.

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November 1, 2016

What Every Autistic Girl Wishes Her Parents Knew

Posted in Uncategorized tagged , , , , , at 11:55 pm by chavisory

It’s Autistics Speaking Day, and I didn’t write anything, not only because my writing-on-command abilities have not been working quite the way I wish they were, but also because I have been proofreading and formatting the first anthology from the Autism Women’s Network, What Every Autistic Girl Wishes Her Parents Knew, which will be out this month (if it kills me. ; )

There are so many lines in this book that it’s been killing me for months not to be able to share or quote publicly yet.  Every single author has something important, wise, and necessary to say, and I couldn’t be more thankful to all of them.

Visit the book website to see our teaser video and sign up to be notified on release day!

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[Image reads “What Every Autistic Girl Wishes Her Parents Knew” and depicts three girls drawn in cartoon style:  One has blonde hair and blue eyes, wears a gray shirt and a bow tie and is using a cane.  One has brown skin, black hair, and green eyes, wears a blue shirt, and is sitting in a wheelchair.  One has olive skin, brown hair, and brown eyes, wears a pink dress, and waves at the audience.]

Art by Haley Moss, editing/design by Erin Human.

November 1, 2014

When I hear you say

Posted in Uncategorized tagged , , , , at 8:00 am by chavisory

When I hear you say that we have no language,
it’s as strange and sad to me as if you had said
There are no stars, because you’ve never
been out in the country at night. Never lain out
in predawn dark in a frozen roadside field
to see the Leonid showers.

That the pulsing lights of fireflies
are meaningless chemical blips,
not love songs in Morse code.

It makes me think you’ve never known
the easy comfort of reading together,
sharing a porch filled with morning sunlight.

Not known the thrill of the first time
you realize you’re sharing a thought
without even a glance.

Never spent a Friday night looking up
radio interviews for the pleasure
of hearing your own accent,
your own native dialect of metaphor,
spoken for just a few minutes.

It’s like hearing you insist that the feeling of walking
barefoot through soft grass can’t exist
because you’ve never done it.

That you’ve never gotten a letter in the mail, only catalogues and bills.

You’ve never read poetry; your school library had only textbooks.
There are no fairy tales in Icelandic, because you don’t speak it.

Never heard the soft fractal murmur of breeze
in oak and elm and walnut boughs in August,
the heartbeat drone of cicadas.

It’s always been winter.

November 1, 2013

You should tell your kids that they’re autistic.

Posted in Uncategorized tagged , , , , , at 1:10 pm by chavisory

How hard it is to say what it was like
in the thick of thickets in a wood so dense and gnarled
the very thought of it renews my panic.
It is bitter almost as death itself is bitter.
But to rehearse the good it also brought me,
I will speak about the other things I saw there.  (Dante’s Inferno)

I’ve seen this passage quoted before by others in order to explain what it’s like to grow up autistic and not knowing.  It’s still by far the best explanation of that feeling I’ve ever read.

For Autistics Speaking Day this year, I want to say something unequivocally.  And it’s incredibly rare that I feel qualified to just tell other people what they should do, but—if you are an autism parent—

Please tell your kids that they’re autistic.

Or have autism.  Or Asperger’s Syndrome.  Or are on the spectrum.  Whatever.  They can make their own choices about language preference later.

I don’t know your kid, so I don’t know when the right time or the right age is, or whether the best way is to have a talk and tell them all at once; or slowly, in trickles of information over time; or to simply always talk about it at home so they grow up always knowing.

However you tell them, just tell them the truth.  It’s worth it.

1. They already know that they’re different.  You can’t keep them from knowing they’re different by not telling them.

I knew when I was 3 years old.  I could tell things were harder for me than they were for other kids.  I could tell when I didn’t understand things that other people did (and when they couldn’t understand things that I did), that other people didn’t have as hard of a time explaining what they needed and getting it, that I didn’t know what I was supposed to do when other people expected me to, that I was expected to know things I’d never been told.  That I didn’t know how to dress, that I didn’t get invited to parties.  That things hurt my ears, that being touched felt wrong, that I was ignored by every single girl in my 5th-grade class except one for the entire year.

We have very good pattern recognition.  It’s very hard not to notice, actually, when every single description of the world you’re given…doesn’t quite match up with your perception.

And being told by adults that I was wrong, that I was imagining it, didn’t make me wrong about what was happening; it made me not trust adults.

2. They deserve to know.  They are entitled to accurate information about themselves.

If you had a kid who was gay or transgender, would you want or expect them to go the rest of their lives without the self-knowledge and self-acceptance involved in claiming those labels?  Or without the ability to seek out information, history, appropriate health care, emotional support, and community with others if they wanted it?  Why should those things be denied to an autistic kid?

(I wrote that and then realized that of course there are parents who would deny those things to an LGBTQ child.  But I hope you wouldn’t.)

That someone is autistic is information about their brain, about their body, about their life, and they are the rightful owners of that information.

Most people I know who either found out their diagnosis, or received a correct diagnosis as a teenager or adult, were relieved to have the knowledge, but resentful of their parents having kept it from them.  I know people who are glad not to have been diagnosed as a child—mostly because of the awful things it was considered acceptable to do to autistic kids when we were growing up, not because we didn’t crave the knowledge—but no one who was diagnosed and is thankful that the information was withheld.  Most people I’ve known have been relieved to know that it wasn’t just their fault that they couldn’t just be like everyone else.  To find out that there were other people with similar challenges who were okay.

3. Yes, labels can carry stigma.  But it’s the stigma that’s wrong, not the fact that a word exists to describe some facet of how your brain works.

Not knowing the word “autistic” will not make your child not autistic, and it will not protect them from the mistreatment that frequently follows being autistic.  I carried no label of a disability for most of my life, yet most of the same things happened to me as to people who did.

If what you really fear is that your child will be marginalized or mistreated for being autistic, then fight the marginalization, misinformation, bigotry, and dehumanizing stereotypes with us.

The burden of a stigmatized identity or disability label is difficult, but the burden of a void of missing knowledge about yourself, is much worse.

4. Knowing how to describe why things are harder for you is not “using it as an excuse.”

Knowing why certain things are hard for you (and other things are easier) is vital to good decision-making about how to use the resources of time, energy, and cognitive bandwidth that you have.  And also to constructive thinking about how to come up with workarounds and good strategies for things that you want to learn to do.

That I didn’t know and couldn’t tell anyone why things were so hard for me, did not make them less hard.  It did not make me magically able to just do things the way everyone else did.  It made me a lot more anxious, guilty, resentful, and frightened to ever put myself in a situation in which I didn’t know if I’d be able to do what was expected of me.

Being able to recognize what’s a productive use of your internal resources, and what isn’t, is a vital skill when you’re seeking to live sustainably with a disability or major cognitive difference.  Neurological boundaries don’t disappear because you lack the words to describe them.  Disregarding or pushing past those boundaries is a useful thing to be able to do sometimes, but having to do it constantly and relentlessly is no way to build a life.

5. Having community is pretty much the best thing.

There’s a lot about being autistic that most professionals, teachers, or therapists don’t know anything about.  Or even if they do, they can’t know what the internal, subjective experience is.  So practically the only way to get perspective or help from someone who knows exactly what you’re talking about, is to talk to other autistic people.  From certain sensory, cognitive, and emotional experiences; making self-care skills manageable; organizational strategies; making your habitat friendly and interdependent living; useful use of scripted language; overload, shutdowns; the reality of midlife breakdowns and loss of abilities later in life (because yes, this can happen at any time in our lives, not just early childhood); to differences in how we experience time, memory, sexuality and gender…to just being able to share obsessions and pleasures like cats and trains and things lined up in rows with mutual passion.  It is really, really good to be able to talk to other autistic people about things.

Sometimes it’s just nice to talk to someone who talks or thinks like you.

I also have autistic friends who aren’t part of the online/advocacy communities, and that’s fine.  Some people decide they don’t need or want that community in the same way, and that’s their decision to make.  But they can’t make an informed decision if they don’t have the relevant information.

6. They will figure it out anyway.

We have the internet, and because autistic people write about our lives all the time, in blogs and books and poetry and song, they will stumble across something that accurately describes what their life feels like in a way that nothing else ever has.

At somewhere between 1% and 2% of the population, we are everywhere, and they’ll meet one of us, and someone will tell them the truth.

We are characters in books, movies, plays, and popular television shows.  There are more and more chances that they will see themselves accurately represented, and put it together.

I had to figure it out myself (though not without help, but that’s another story).  It took me 28 years, and it consumed me utterly.  I could never get on with living my life in certain ways until I knew.  I will probably spend the rest of my life trying to describe, trying to tell the truth, about what exactly that lack of knowledge did to me.  I’m 31 now and I’m not even close.

Walking down the street and feeling like the world makes sense is a feeling I’m still getting used to.

Harder to express how that break becomes healed, a bone once fractured, now whole, but different from the bone never broken.  And harder still to follow the path between the two. (Eli Clare)

…and when they do figure it out, and realize that you knew and withheld the information, both of you will have to deal with that breach of trust.

I’m thankful, at least, that my parents genuinely didn’t know, that they were actually misinformed and clueless, that even if I still think they were somewhat in denial, they weren’t lying to me.  If they had been, and I had ever learned that they’d deliberately denied the information to me, I don’t know that I’d ever forgive them for that.

And while I’m as proud of this as anything I’ve ever done, it’s not something I would put someone through if I could help it.  You can help it.  There’s so much more of life to live than having to wrench the most basic facts about yourself out of the fabric of the universe.