On Disorder: Autism, Lovingkindness, a Call for a New ASD Acronym … oh, and Suzanne Wright

ASD stands for Autism Spectrum Disorder.

Disorder.

Disorder means something’s wrong.

So something is wrong with you if ASD is a part of who you are.

There’s something to fix — essentially a disease that needs to be cured.

And that’s just the language some major autism organizations use: let’s find a cure.*

The irony of the disorder label, of course, is that so many people with ASD try so hard to create worlds of order out of and within our disordered world.

But they’re the ones we call disordered.

My son, Nicholas Thurman Jackson Hemachandra. Nicholas is 13, and he is autistic.

My son, Nicholas Thurman Jackson Hemachandra: Nicholas is 13, and he is autistic.

And what does an autistic person hear? I need to be cured. Or, other people need to be cured so they won’t be like me. There’s something fundamentally wrong with me.

That’s in stark contrast to the language that adult autistics who overcome such memes and claim their power use.

They use a language of acceptance. They use a language of differences — “not less, but different” — and diversity.

In some circles, there’s sometimes even a quiet language of not less, but more. Not something to be cured, something the rest of us can aspire to.

Why? Well, here’s one reason: By my experience, autistic people generally are more accepting than non-autistic people. They judge people less and accept people more. They have a greater inherent lovingkindness.

So the vantage point is critically important. ASD can be seen as a disorder. But it can also instead be seen as a valid and useful claim of culture and identity.

This culture and identity have their own world of differences and diversity within them, too.

And they are breathtakingly beautiful.

It sometimes is suggested, as the prevalence of autism and autism detection increases and widens, that autism is an evolutionary development for humankind.

I won’t try to judge that one way or the other. But I will say this: When humanity evolves, at first it will look in individuals as, well, disordered. Something is different, and that means something is wrong.

We will likely try to eliminate — to “cure” — the improvement, perhaps out of ignorance, perhaps out of discomfort, or perhaps out of simple fear.

In the meantime, though, back to ASD: It’s a phrase that is commonplace now and likely isn’t going anywhere anytime soon.

So let’s change the acronym!

I’m not kidding.

Language matters. Words matter. They’re consequential.

And I’ve come up some options to get everyone started:

ASD = Autism Spectrum Difference (likely the strongest candidate you’re getting from me)

ASD = Autism Spectrum Development (plays to the evolutionary concept)

ASD = Autism Spectrum Dimension (because it’s just one aspect — albeit an important one — of these people’s lives, plus it has the cool science-fiction-y aspect to the word “dimension”)

ASD = Autism Spectrum Distinction (I like this even though it almost begs for a “the” beforehand)

ASD = Autism Spectrum Dialogue (hmm, not sure about this one …)

ASD = Autism Spectrum Destiny (okay, I’m starting to get just a little silly …)

We’ll take other nominees, as well as votes in the comments section of this post. If you blog about the topic, please let me know or write a comment on the post letting people know. When we come to a consensus, I’ll pass along the best suggestion to the White House.

No, really, I will. And they’ll send me a very nice form letter in reply. I have a collection of such cards and letters from various presidencies.

I hope autistic people will themselves take the lead in this little movement. ASD, as a term and as an identity, belongs to them. I’ll ask my son, 13 years old and autistic, this evening which of these possibilities is his favorite or if he has his own nominee.

But then we’ll start changing usage of “ASD” from the ground up.

And that will matter and make a difference.

*…

I wrote and scheduled this post just before the whole latest Suzanne Wright–Autism Speaks imbroglio hit. I decided to let it post today anyway; if anything, the timing seems unusually relevant and on topic for me. But, for those unfamiliar with that situation via the blogosphere, let me re-post what I wrote on Facebook this past weekend, because it’s completely relevant to this blog entry and will eventually require further elucidation as to the Facebook post’s conclusion, and then include a list of links to relevant information online (rather than interrupt the writing with links in the text).

One more note, addressing the backlash to the backlash: saying the Wright piece asserts and distorts autistic identity and attacks the value of autistic people is not the same thing as denying that there are many, many autistic individuals, as well as family members and caregivers, who face fierce challenges and need support. There are; the need is serious and urgent. I do think, though, that regarding autistics as human beings, rather than as lost — as human beings right now, regardless of their neurotypical functioning — obviously better humanizes autistic people (for those people who somehow need that step) and makes society more aware and more hopeful and thus more loving and kind — and more likely to offer support.

Here’s the post from my Facebook wall from Sunday, November 17, 2013:

There has been intense hostility toward Autism Speaks within the adult autism community for a long time, partly because of its manifest hostility toward actual autistic people and also because of its simultaneous and insane assertion, claimed in its name and generally accepted outside the autism community, that it speaks for them.

But the broad-based and fierce response online by adult autistics to Suzanne Wright’s recent letter has this time been matched by institutional condemnation of it by the Autism Society and the Arc (in addition to the very public John Elder Robison resignation).

It’s an extraordinary crisis moment, and really that’s a good thing. Perhaps this moment holds the possibility, finally, of change for this mammoth organization: of respecting autistic people, better incorporating them and their perspectives into the organization, better assisting them in their lives, and helping transform the memes about and stereotypical portrayals of the community in American society and around the world.

There are a lot of takeaways from this conversation, but here’s what I think to be an important combination of them:

As so much of the money for autism and dialogue about autism focuses almost exclusively on “cures” for it, rather than on respecting and assisting autistic people and building a kinder, more loving society that is more accepting of differences, there will come a time, quite possibly very soon, where there is a real threat of cultural genocide for people with autism. In some other populations — including Down syndrome — genetic testing has combined with cultural stereotypes and misunderstandings to lead to abortion rates at or above 90 percent [according to several credible online sites]. Autistics realize that prevalent societal ideas about autism have existential consequences for them (and so, in important ways, for all of us). And, rightly, they will not go quietly. They do not want to go at all.

But a change in the mission of Autism Speaks would be an essential step in transforming the national conversation about autism and opening up a future of possibility and promise.

Otherwise it remains, as many autistic people perceive it, an organization that needs to be defeated.

Here are links (with excerpts) to some notable participants in this online conversation — starting points only; this stream has become incredibly viral — that together marry nicely with the subject matter of my original post above, which was written shortly before the Wright op-ed:

Suzanne Wright, cofounder of Autism Speaks, Nov. 11, 2013, op-ed: “This week is the week America will fully wake up to the autism crisis. If three million children in America one day went missing — what would we as a country do? If three million children in America one morning fell gravely ill — what would we as a country do? We would call out the Army, Navy, Air Force and Marines. We’d call up every member of the National Guard. We’d use every piece of equipment ever made. We’d leave no stone unturned. Yet we’ve for the most part lost touch with three million American children, and as a nation we’ve done nothing. … These families are not living. … They are existing. Breathing — yes.  Eating — yes. Sleeping — maybe.  Working — most definitely — 24/7. This is autism. Life is lived moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future. This is autism.”

John Elder Robison’s resignation from the science and treatment boards of Autism Speaks: “I celebrate the gifts autism brings us, and I have discussed at length the emerging realization that autism — as a neurological difference — confers both gift and disability on everyone it touches. It’s the fire that moves humanity forward, while simultaneously being a fire that can burn us individuals as we try to make our way. … I cannot continue to stand up for the public actions of an organization that makes the same mistakes over and over again by failing to connect to the community it purports to represent. Autism Speaks says it’s the advocacy group for people with autism and their families. It’s not, despite having had many chances to become that voice. Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target. The absence of people with autism in governing or oversight roles has crippled Autism Speaks in its efforts to connect with the community. Any group that hopes to be accepted in service to autistic people must make autistic people its #1 priority, with no exceptions. The priority cannot be autism parents or autism grandparents. It’s got to be actual people with autism.”

Lydia on the This Is Autism Flash Blog, sans poetic breaks (please click through to the original for them):  “I am quirk and enthusiasm and confidence and joy and brain power and compassion and charm and innocence and spunk. THIS is autism. Suzanne, you sell us so short.  My autistic friends are the kindest, most genuine, most brilliantly unique people I have ever known to grace this world. … We are loyal, gracious and graceful.  We respect others for their differences … in fact, we welcome them. They make the world more colorful.”

Amy Sequenzia on Autism Women’s Network: “She talks about autism as a disease, which is a lie; she says we are lost. So, here I am, not lost, not ill, all grown up and speaking up. … The only ones who lost touch with the three million children are the leaders at A$. They don’t see autistics as human beings and they refuse to acknowledge that we grow up and thrive, given the proper resources and if treated with respect. A$ lost touch with autistics because they deny the diversity of the autism spectrum and they deny that even the ones they call ‘severe’ can contribute and lead fulfilling lives. If they looked at me, they would say I am hopeless. Yet, I live a great and proud Autistic life. … Ms. Wright should be drafting an apology to me, to my autistic friends, to every autistic person and their families. Maybe she should begin by apologizing to her grandson. I recently lost my grandmother and I miss her love. She loved me during my meltdowns, through my developmental delays. She always talked to me like one talks to a human being. More importantly, she never diminished me or talked about me as a burden, even during my sleepless, difficult nights and days.”

Jess on the Diary of a Mom blog: “This is my daughter. She is not lost. She’s right here. And she can hear you. Whether or not you choose to believe that Autistic people can hear you, they can. How do I explain your words to them? To my daughter? How do I tell her what you mean when you speak of her parents and you say, ‘How much can we ask them to handle? How long will it be before the exhaustion makes them ill?  How long before they break?’ How do I tell her that her Mama does not see her as a burden and never, ever will? How, when you are telling her the opposite? … (People) need to know that while it is absolutely true that there are Autistics and their families in desperate need of immediate support, and that there is indeed an urgent need for both short- and long-term plans of action for them, they are not to be feared. They need to know that autism is only a death sentence if we continue to allow people like you to spew rhetoric like this from on high — rhetoric that demonizes and dehumanizes our loved ones, telling them that they are a tragedy, a burden — a thing to be feared rather than people to be included, supported, and loved.”

Autism Society of America’s response: “The Autism Society … does not believe nor accept the description of a person with autism as described in a recent Autism Speaks blog. The Autism Society believes that every person with autism is a human being who is deserving of a compassionate and caring society, that always treats each person with respect, dignity and value. We also believe that every individual with autism has a fundamental right to live in a world where they are valued and provided full dignity, to maximize the highest quality of life possible. To define any person with autism as anything less is wrong. To consider a child or adult with a disability as a burden as some do leads to stereotypes that are damaging and insulting to so many of us.”

The Arc’s response: “Your description of children with autism and their families is polarizing and divisive, creating rifts within a community that can ill afford it in these perilous times. Characterizing people with autism and their families as victims suffering from a dreaded affliction ignores the diversity of the community of people with autism, as well as their creativity, perseverance, adaptability, resilience, and overall beauty of their human spirit. It belittles the many who, rather than seeking to be cured, are striving for their human rights to be accepted and respected. It is far from reality for many people with autism whom I know and who are involved in our work. All are deserving of dignity and respect.”

If you enjoyed this article, please, I ask you to share a link to it on your social media channels to spread the word. Please comment, as well.

I invite you to read other posts I’ve written about autism, special needs, and my son Nicholas, including:

 

5 thoughts on “On Disorder: Autism, Lovingkindness, a Call for a New ASD Acronym … oh, and Suzanne Wright

  1. ASD = Autism Spectrum Difference (likely the strongest candidate you’re getting from me)

    That’s one I came up with independently a few years back, and is my personal favourite.

  2. ASD: Autism Spectrum Delivers !
    It is here, it exists, and it delivers.
    I have mixed feelings about Suzanne Wright. I am far more accepting of what this woman was trying to say than you might think I would be.
    People: There IS a crisis, in the sense that we as a nation DON’T do enough to prepare for happy futures for our children with autism. That is sort of what she was trying to address. Does the majority think these kids can get about in the worlld as it stands with ease? Many of them cannot care for themselves. It ISN’T ALL FLOWERS AND HEARTS. Yes, it is one hundred percent worth it, but we must lobby for care and loving preparation for the future for our children because chances are they will outlive us and we want the best for them always. Suzanne was not all wrong. This is not a fairy tale, It is just different and yes it IS hard on the kids and the caretakers and yet it is worth it. However it is a reality which DOES exist and we need to address it in an informed manner.
    Jim and I do celebrate our kids and have since they were born, but we want rights. laws and proper respect for them as well as understanding, We have learned from them. given our blood and our time since day one to the community for the sake of education and research, and we owe them big time for what they have given us. Which is love.

    jean

    • @ jean: Suzanne Wright pretends to be saying “We need to do more for these children!” but what she’s actually saying is “We need to do something about the Autistic Problem, that’s why we’re working on a Final Solution.”

  3. Well, you may not believe it, but I have taken your question here very seriously, put a lot of though into it & finally came up with my own suggestion to share! :)

    So how about:

    Advanced Stimming Development!

    (Because I have found that Autistic people develop far superior stimming skills!!)

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