hot potato

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{image is a photo of Brooke, standing on her tiptoes, trying to look over our back fence}

Last weekend, a comment showed up on Diary’s “About” page:

I have been hoping that one day someone with some following would write about the things that tend to divide the autism community. Honestly I think you’re the one. What do I mean by the things that divide us? (Not that you would need to ask). We have so many subgroups that our message about who we are as a community becomes confused and garbled. Here’s my list:

-vaccine people
-environmental pollutants people
-diet as treatment people
-TACA crowd, they’re looking for a “cure”
-genetics people (I’m here)
-Non verbal people often looked upon as “low functioning”
-high functioning people that don’t generally want to be lumped in with the general population of people on the spectrum and use the term high functioning as a way to set them apart from other people with autism.
-the person first people who are offended by being referred to as autistic.
-the “autistics” that wear the label proudly.
-and finally the Neurodiversity people.

I hope in the future that all people on the spectrum and their families can come together in a more unified way

My first reaction was, quite frankly, dismissive. “I do that ALL the time,” I thought. But then I thought again. (As you do.) And had to admit that it’s been years since I really, truly had addressed the divisions in our community head on.

You see, delineating our differences by naming the various schools of thought (or, Heaven forbid calling them “camps”) scares me. The thought of doing anything that could possibly help to further institutionalize the ideological entrenchment that runs so rampant in our community terrifies me. But so too, I am terrified of doing nothing. Because whether or not I acknowledge the elephant in the room, he is there, smashing the furniture to bits with each step. Whether or not I want to say out loud that we are a community deeply and painfully divided, we are. And until we find a way to reach out to one another and coalesce around some kind — any kind– of core goal, we will continue to waste our precious and limited energy spinning our wheels.

Don’t get me wrong, I don’t believe that we have to agree on everything. Or even much of anything. I don’t even think we have to agree on what autism is. Which is good, because I don’t think we ever will. I don’t think we have to see eye to eye on whether it is a disability, an identity, or (as I believe it to be) both. Rather, I strongly believe that our strength as a community comes from the acknowledgement of our diversity – from the notion that there is no single ideology, that there is no single story of autism – but instead that everyone’s experience is his or her own and equally valid for and from their unique perspective.

It was three years ago when I wrote the following after listening to then Presidential Advisor, Mike Strautmanis speak at the White House.

But Mike had far more to say. After speaking about the administration, he spoke about US. He leaned over the podium. He spoke without notes. He spoke to us as one of us. An in so doing, he reminded us of what seems so painfully obvious and yet somehow manages again and again to fall on deaf ears in our community.

“As a community,” he said, “we cannot stand divided. We cannot fight amongst ourselves. We must come together, we must stick together. We can argue behind closed doors, but when we open those doors we MUST be holding hands. We need to seek partners. We can only do that TOGETHER.”

It was all I could do not to rush the stage and shout hallelujah and amen.

How many times do we need to hear it, friends? How many different ways can it be said before it finally sinks in? We have turned ourselves into a political nightmare. Politicians who would help us – any or all of us – are terrified that if they do, they will bear the wrath of ‘the other half’ of the community.

We shoot ourselves in the foot every time we take aim at one another. We wrap our arguments in the rhetoric of extremism. We create then propagate division. We sneer at those who would seek a different path for their child – or themselves.

We write and speak of each other with careless disregard for one another’s pain – a pain we ALL should understand. We revel in snark and sarcasm, amusing ourselves at the ultimate expense of progress. We tear each other down when so much more could be achieved by holding one another up. We plant our feet firmly at autism’s poles and lose sight of the entire spectrum of humanity in between.

And we spend our precious time and energy screaming that research dollars are being squandered because they don’t follow OUR thinking about OUR child.

In February of 2013, Dr. Thomas Insel, the Director of the National Institute of Mental Health and Chair of the Interagency Autism Coordinating Committee, wrote The Four Kingdoms of Autism. In that article, he said, “In the spirit of mapping the autism landscape and finding some common ground, I suggest four perspectives that currently separate the communities interested in the autism spectrum. The language, assumptions, literature, and societies that have grown up around each of these perspectives are so distinct, they have begun to represent different countries or kingdoms. Each has its own truths. And each too often fails to understand or even recognize that their truths may not apply to all kingdoms.”

He went on to name the kingdoms: Illness, Identity, Injury and Insight. “These four kingdoms, he wrote, “may not capture the entire universe of the autism spectrum, but they describe largely non-overlapping perspectives that now divide the world of autism. Not surprisingly, professional societies, social networks, and publications have emerged to fortify each kingdom, which may serve to limit interactions and constructive exchange of ideas between their communities.”

He then added, “As long as each kingdom stays behind its own walls, there is little hope for progress overall.”

“A better way forward,” Insel wrote, “will be to find some common ground where the entire community can work together. One such area is the need for better services. Clinicians, self-advocates, parents, scientists, and educators should be able to embrace a goal of ensuring that every person on the spectrum, irrespective of wealth, geography, or ethnicity, receives the best treatments and services. We are unconscionably far from this goal now as families move from one state to another to find services for their child. The challenge only becomes more complex when children with autism become adults with autism.”

Of all the folks with whom I’ve spoken over the years (and that’s a lot of folks), despite any and all of the other things upon which we did or did not agree, I’ve never come across a single person, autistic or otherwise, who didn’t want appropriate and accessible support services for autistic people and our families. Not one.

If nothing else, can we agree on this? That the one thing that we ALL want – that we all believe is the right thing to do – for ourselves and for our loved ones –  is to ensure that every human being has the opportunity to live the fullest life possible, one in which EVERYONE is able to participate to the full degree of his or her potential. One in which we, in our schools, in our towns, in our states, as a nation, as a global society, value every life, recognize our shared humanity, and make every effort to support those with differences – neurological or otherwise?

I think we can. I need to believe that we can.

In 2012, I wrote a letter to President Obama. This is what it said.

I believe in this nation.

I believe in an America whose people are not divided by the illusion of political difference, but who are instead united by their desire to make this world a better place for our children.

I believe in an America that is not torn apart by religious difference but instead thrives on its insistence that respect for that very difference is exactly what makes us who we are.

I believe in an America where every single human being is not just tolerated but valued, supported and celebrated.

I believe in an America in which we collectively treat every child as if they were our own. Because they ARE our own.

I believe in an America whose children grow up knowing that they have the ability to contribute to her success and to reap the rewards of that contribution—regardless of the color of their skin, the city in which they live or the intrinsic challenges that they may face.

I believe in an America whose people come together to support the 1 in 88 individuals* who, like my daughter, has autism because they see that it is simply unconscionable not to.

I believe in the creative will of our people to find innovative ways to unlock the potential of those with autism and other developmental disabilities. I believe in the tenacity of those individuals themselves along with the legion of parents and doctors and scientists and educators and therapists who support them. I believe in our business leaders and our Main Street entrepreneurs. I believe that together we can create partnerships that will change the way we view disability and potential.

I believe in the autism community’s ability to do the work that it takes to make change happen from the bottom up. I do. But no matter how much I may want to believe that we can, I know that we cannot do this alone. If we are to create the America that I believe is possible, we need everyone to participate.

And we need you.

We need you to meet us halfway. We need you to lead with a strong, clear vision of the future that we know is possible. We need you not to follow the tide, but to work with us to shape the tide. We need you to talk about why it is so important to the future of this nation to invest in the autism community. We need you to talk at every turn about why we as a society must value—truly, deeply and systemically value—the potential of people with autism and to convince the non-believers why it is so richly worth the cost—from both humanitarian and fiscal perspectives—to do everything in our power to unlock it.

We need you to help us address the dramatically disparate levels of support for people with autism around the country—from state to state, zip code to zip code and school to school. We need you to help us create a system in which a child’s services no longer hinge on their parent’s ability to advocate effectively for them. That is simply not what this country  is—or should be—about.

We need you to help us fund Early Identification and Intervention programs—the greatest hope for the next generation. We need you to help us create ABLE accounts allowing us to save money for our own children so that the government does not end up supporting them by default when we simply can’t.

We need a federal autism insurance mandate. I know that mandate is a dirty word these days. Call it what you will to make it more palatable, Mr. President, but there’s got to be some kind of uniformity in order to protect the rights of autistic individuals to receive care no matter where they live or what they or their parents do for work.

We need you to help us remove the barriers to building feasible, comfortable, safe and appropriate housing for our children as they run headlong into adulthood. We need you to help us offer incentives to those who create employment opportunities for autistic adults, harnessing their unlimited ability to contribute to our society.

We need you to help us care for our nation’s 23,000 military dependents with autism. We need you to take autism services out of ECHO and put them back into TRICARE as the medically necessary treatments that they are so that the children of Wounded Warriors no longer LOSE ACCESS TO TREATMENT upon their parent’s required medical discharge and twenty-year veterans don’t have to step back into battle because they know that if they retire, their children’s care retires with them.

We need you to help us promote research and a renewed and reinvigorated commitment to real scientific inquiry and critical thinking. We need the money that you promised to fully fund IDEA. We need sweeping legislative change.

Last year, I wrote the following to you:

Your girls are beautiful, Mr. President. They are poised and confident, graceful and self-assured. You must be incredibly proud of both of them. I ask you, Sir, what if Malia or Sasha had autism? What would you do to help them? I’m guessing the better question is, What wouldn’t you do?

I believe in an America in which we collectively treat every child as if they were our own. Please, Sir. If my daughter were yours, what would you do?

I believe — I have to believe — that no matter how different our lives may be, no matter how hard it sometimes seems to find even the slightest bit of common ground,  we can move forward and we can and must do it together.

I believe that no matter how abhorrent we may find each other’s views at times, we owe it to ourselves and our children to find and focus on the shared goal of support. If we don’t, we will continue to languish without services, without systemic reform and without the help that many of our families so desperately need.

If we don’t figure out a way to work together, we will continue to be the perennial political hot potato by which no one in power is willing to risk being burned.

*now 1 in 68

25 thoughts on “hot potato

  1. I totally get what you mean, but it’s incredibly hard to find common ground with people who wish I didn’t exist. It’s not just an issue of finding the right language or trying to work towards a common goal. It’s about my right to life as an autistic person.

    • Yup. It’s huge. This isn’t a matter of fiscal policy, it’s a fight for fundamental human rights. I get it. I really do.

  2. I will not support those who abuse, shame, belittle, or mistreat their children because of their autism. Outside of that? Your Autism Street analogy has shown me that my house on that street looks very different than other houses, and I can only speak to what I live with in my own house. Of course I’d like the entire world to see things my way, but just as autism is a spectrum, there is a spectrum of approaches to parenting autistic kids, and living with autism itself. As I watch my twins grow up and see their personalities becoming polar opposites of each other, I realize that they may have polar opposite views on what it is to be autistic and how they want to be referred. And that’s okay. I think I’ve reached the point where I can’t focus my attention on the “autism noise” out there- the division, the fighting, the labels. I just want to love my boys, raise them well, and ensure they have every opportunity to succeed and be happy in life. And, of course, it is my hope that ultimately their voices are heard above mine regarding this topic. If that happens for all of our kids, that’s the ultimate success, I think.

    • As you know, I couldn’t agree more that ensuring that autistic voices are heard and respected and powerful is the ultimate goal.

      I just wonder how we will give our kids every opportunity to succeed without institutional reform.

      blerg,

  3. Here’s the thing with regard to all agreeing on better services.

    The kind of services that are “better,” actually do depend on what autism is. If someone believes that autism is an injury or a disease…that deeply affects the kind of things that they believe, for instance, that insurance should be required to pay for to be done to us and the kinds of therapies we should be subjected to.

    Some of those things are, and have been, soul-destroying and life-threatening.

    I don’t think we have to agree about everything in order to work together for some things that we do…but actually, yeah, I think there are some basic principles that are worth fighting for.

    • Oh gosh, I don’t mean to imply that we should abandon the fight for what we
      know is right (and against what we know is wrong!) and of course you’re absolutely right on specific types of therapies.

      So what about housing? Community services? The money for IDEA. ABLES accounts? Supported employment? Equal access to health care (including transplantation) and medical insurance? What about research into the efficacy and long term effects of various therapies so that schools and insurance companies can’t keep saying that ABA is the “only scientifically researched and sanctioned method” — so that there will be other viable options?

      I feel like there has to be something upon which we can agree without sacrificing our core principals.

  4. I agree with you. There’s another elephant that needs to be addressed though. Even if we were to meet over common ground – and the need for appropriate supports and services is indeed common ground – how do you achieve that when one very large, distinct, blue group does not recognize the validity of actual autistics speaking for themselves? It’s one thing to work toward a common goal. It’s another to have to fight for a place at the table in the first place.

  5. While your position surely is heartfelt and well-intentioned, as an autistic person I find it logically and ethically untenable.

    Genocidal maniacs such as Autism Speaks would eagerly have erased/”prevented” your daughter’s existence, and my own, given the chance. The elimination of autism (and hence autistic people) from the planet is their main and overriding goal and priority.

    If you accept that autism, for better or worse, is a fundamental component of an autistic person’s being, then it is a logical and ethical impossibility to recognise common ground with said genocidal maniacs without giving up basic respect for your daughter’s personhood.

    Same goes for the antivaccinationists led by Wakefield and his ilk, who pursue similar goals with regards to autism *and* have already caused the actual death of far too many autistic and non-autistic children.

    These movements are very powerful, highly influential and extremely harmful, which makes a choice inevitable. And when such evil is staring you in the face, there are only two possible choices: the wrong one and the right one.

    Remember, well over nine out of every ten of babies with Down’s syndrome are aborted. That is the sort of genocide autistics will be facing as well if we let these people win. There is no common ground there that won’t sully you.

    • Eh, her viewpoint is “logically and ethically untenable” only if you take this post out of context. However, once you put the concept of “common ground” IN context, it makes perfect sense. (the context being, let’s find ways to improve the lives and well-being of autistics). Also, if you read this blog, I think it’s only fair to put “common ground” in the context of how Jess writes generally. You can say you oppose Autism Speaks…but Jess has actually written beautifully about the harm they cause; her message has been spread, shared, even by the general media, so not only does she share your concerns about Autism Speaks, she’s actually done something about it in a meaningful way. So, again: context. She’s not saying common ground means boosting voices that harm autistics. As an autistic person, I find this post to be both logically and ethically tenable.

      • Please note that the author’s obvious good intentions were the first thing I acknowledged in my comment. And they are indeed obvious because of the history of this blog.

        But ultimately, intentions are not very relevant. The post says what it says. If it was meant to say something else, it should have said that instead. As it stands, well-intentioned or not, this post calls for autistics to find “common ground” with the ENTIRE autism so-called “community”, including the most extreme anti-autistic genocide advocates in existence. Just to make it clear: antivaccinationists were explicitly mentioned. You don’t get much more extreme than antivaccinationists.

        Normally, my reaction to such a call would be more along the lines of “over my cold, dead body”, to put it politely. But the author is obviously well-intentioned, so, to avoid causing unnecessary offence, I went for a carefully constructed logical argument instead.

        Which frankly takes quite a bit of energy and self-control when what you really want to do is scream bloody murder because yet another prominent person you thought was on the right side calls for sympathy with anti-autistic genocidal maniacs.

        But the author is hopefully just slightly misguided and so it’s worth spending the energy on that self-control. What I categorically refuse to do, though, is stay silent when an influential blog calls for me to seek “common ground” with those who would have eliminated my existence and that of those like me.

        Of course it figures I would get some insulting spiel about “context” as a reply. It’s one of those bog-standard tactics used to dismiss autistic self-advocacy arguments out of hand. “You’re autistic, so you’re obviously not *understanding* the *context* of the author’s *intentions*!” Well, it’s true, I’m actually not psychic. Neither, I presume, are most other readers.

        The post says what it says, and merits a response on that basis and no other. Attempting to second-guess it would be insulting in itself.

      • Martijn: “intentions are not very relevant”

        agreed, that’s why I did not refer to her intentions, but her specific words and actions.

        Martijn: “But the author is hopefully just slightly misguided”

        We’ll just have to agree to disagree over this one, my friend. I think we need more discussion, more engagement…and that will at times mean communicating with people we’re not on the same page with. If we wall ourselves off behind the “right” position and belittle all others by calling them “misguided” and/or genocidal maniacs, we’ll end up with a “preaching to the choir” scenario, which will leave the anti-autistic status quo firmly in place. It needs to be challenged, and that requires the hard, messy work of finding ways to communicate. You see communication as waving the white flag…fair enough, again, it’s an agree-to-disagree moment. Take care, Martijn.

      • Gentlemen, I very much appreciate both of your perspectives as well as the time and effort that it clearly took to share them in the way that you did. I understand your thought processes and can absolutely understand and, in my own way, relate to the emotional response as well. I don’t discount either when I say that it terrifies me that we may not be able to find any common ground at all, in any capacity, with other members of the community.

        We need help from those in power – in our towns and our cities and our states, and, of course, nationally, if we’re ever going to create and sustain the kind of services that autistic people and our families so desperately need in order to not just thrive but survive. We can’t get help for our kids in their schools without reforming, or at the very least, enforcing, the laws we have. We won’t get employment reform or supported community housing programs or changes to the SSDS system without politicians’ help. We’ll still be cutting people off from services if their IQs are above 70 because we couldn’t get anyone to listen to the absurdity of using an IQ test (with or without all of its flaws) as a measure of disability.

        I am a strong proponent of reproductive choice. While I have come to a point in my life where I don’t think that I, personally, could abort a pregnancy, I absolutely support every woman’s right to make that decision for herself. To those who very strongly believe that life begins at conception and abortion at any stage is therefore murder, my views on the matter make me homicidal. Likely, even, a homicidal maniac.

        We have watched our Congress languish in no man’s land for years now, accomplishing little to nothing because they are so deeply entrenched that they won’t negotiate with one another, even on matters where they might just find agreement, because there’s such fear of being perceived as compromising their ideals. A so-called right-to-lifer won’t talk to a pro-choicer about the provision of low-cost breast cancer screening in the context of women’s preventative healthcare because now they’re each working with the devil. That’s the part that scares me most. When they stop talking. And women in the inner cities lose access to basic health care.

        Over the years, I’ve spoken with everyone from local school board members to senior US Senators to Presidential advisors. And every one of them has said, in some fashion, that it’s simply too risky to go out on a limb to fight for autism legislation when they know that it’s going to, as one very senior official once put it, “Piss off at least half the people that it’s supposedly designed to help.”

        It scares me to think that we might just languish in that place. And please, please don’t get me wrong, by no means whatsoever was this post directed at any one part of the community — it was directed at every single one of us, me included, who have given up on engaging with those whose ideologies clash with our own.

        I just don’t know what the path forward is. I don’t know how we will possibly get the help that we need for ourselves and our loved ones.

        I don’t have answers. I’m not saying, in any way, shape, nor form, that anyone here is wrong. I just don’t know what to do if we’re all right.

        Thank you again for participating in the conversation and for seeking to understand my intentions in opening it.

  6. Yes to you, and to Missusmc and Chavisory. A main ingredient in all of this is respect, and that is missing, it all falls apart. My son is “lightly brushed” as you would say, and I had a very basic awareness of autism, and NO awareness of an autistic community. I am so very happy that I found your community, and through it the autistic community.

    When I first started this journey, I was looking to understand what was going on for my son. Of course, the first thing I found was Autism Speaks. The “cure” attitude made sense because I didn’t know enough at the time. I understand parents that want a cure because they are overwhelmed and they want it to stop, and they don’t (or maybe can’t) think beyond that.

    BUT, then I somehow found Diary, and the perspective of autism there was different, had shifted away from AS’s attitudes and towards Autistic experience and understanding. That struck a chord for me, and AS no longer made any sense. I now look first to autistic voices for answers to questions about my child, and to them and neurodiversity parents on how I can deal with parent stuff.

    That’s a sticking point for me, though. Non-autistic parents that dismiss autistic voices because they don’t EXACTLY match the age/symptoms/experience of their child are a huge stumbling block to getting on the same page. Discounting people who ARE autistic in discussions of what is needed to help AUTISTIC people is mind-bogglingly confusing.

    I’ve stuck my foot in my mouth out of cluelessness. I’ve been overwhelmed by the anger of some autistic activitsts and sometimes can’t read the words all in one shot because it’s overwhelming (yeah, that’s a teaching moment for me in itself because life is like that for them all the time) – but I go back and try to absorb it in pieces.

    Sometimes it seems like a similar issue happens here as well – the pain is so big and so in the way that they don’t hear the pain of the parents who are freaked out about the pain of their children.

    How do we get the pain out of the way? Is it possible? When you’re in pain, you can’t think about anything else. Most of the time, someone elses’s pain doesn’t register through yours. And if you believe only a certain thing will make the pain go away, you might ignore or dismiss other suggestions to relieve it because they don’t make sense to you.

    Sorry for the ramble. I hope it made some sense.

  7. I totally appreciate and get what you’re going for with this post, and at the same time understand the problems other autistic people have mentioned. I’ve thought hard about my reaction to this, and think I might be able to clarify some stuff. I think that most of the potential shared goals you discuss fall into two broader categories:
    1. Broader goals concerning funding and infrastructure for social support systems, public education, and universal health coverage, most of which are shared by people on the liberal end of the political spectrum.
    2. Goals specific to reforming public and scientific understandings of autism, and of autistic people, for the purpose of respecting and supporting autistic people.

    Now, obviously, if people aren’t already in support of the first kind of goals, it’s possible that if they learn how these goals will help autistic people (like their child, or sibling, or partner) they might come to support them. But if someone isn’t down for a basic social safety net, my distaste for their political views will have nothing to do with how they feel about me as an autistic person. So like, yes, we should work towards having better funding for basic housing, education, health coverage, etc. I mean, granted, I’m so obscenely liberal that reading the New York Times often pisses me off because it’s too conservative for my tastes, but I consider those kinds of broader social goals to be something of a moot point.

    The second kind of goals are…you know, the ones most people in the “autism community” tend to disagree about? And when someone asks “meet them halfway,” I’m like “Dude, I’m currently meeting you 95% of the way because society gives me no choice, and all I’m asking you for is 5%. That’s all I ask.” Because, let’s be clear, there is a huge amount of money currently being spent on autism research. And there is a huge amount of money being donated to Certain Charities that purport to support autistic people. It’s just that the large, large majority of that money goes towards programs that run counter to the interests of most autistic advocates. Autistic advocates and people who hold scientifically/socially mainstream views of autism are not equally supported financially, socially, or politically.

    Yes, it’s important to recognize people’s right to not automatically agree with me on everything. And it’s exceptionally important to be open to the different experiences autistic people and their families have. But people with views diametrically opposed to my own currently receive 95% of all financial and social support given to our shared “community.” And therefore, I find it difficult to believe that me “meeting them halfway” won’t just mean me giving up even more of the tiny amount of voice and support I’ve got. It might seem “equal” but it would not be equitable.

    I have more things I could say on this, but this is already absurdly long, so I will restrain myself :). you’re great!

  8. Martijn, there are probably a lot of people who use/contribute to AS who haven’t clicked onto the nastier side of the agenda. They just want help and don’t easily find the smaller, less prominent autism organizations. Calling desperate parents who grab the first thing that looks like a lifeline “genocidal maniacs” doesn’t help, and probably will only set them on the defensive – which is the LAST place we need them to be. Attacking drives people away.

    AS itself isn’t going to change. But it’s an organization that’s made up of people. These thousands of people who donate, participate, etc., CAN learn more – Jess was one, and I was one. I didn’t see the forest for the trees – I looked for information that fit what I needed to help my son (they do have some good info among the misguided stuff), and was wound up in what was going on in my life. I didn’t see the perspective that AS came from immediately. When I started to get a “bad vibe” from them, and then when they royally screwed up in Nov. 2013, I turned completely away and never looked back.

    I can’t imagine how frustrated, angry, etc., these organizations and their attitudes make autistic people feel – I haven’t experienced it. I can try, but I’ll never know because I’ve never borne the brunt of this kind of thinking. But I’m a parent of a kid on the spectrum, and attacking a parent who is flailing around for support won’t get us where we want to be, and won’t get the support we need.

    • Perhaps you can imagine being told all your life:

      – that being a woman is a horrific tragedy;
      – that being feminine is bad and wrong because men can’t understand it;
      – that being indistinguishable from men is the only acceptable state for women to exist in;
      – that your womanhood is a horrible burden on your parents;
      – that the world would be so much better if there weren’t any women,
      – that women are an unacceptable financial burden on society because they will never make as much money as men,
      – that it would be better to have cancer than to have womanhood because at least cancer patients will die soon,
      – etc. etc.

      …and that this fantastic, rich, generous, well-connected charitable organisation called Womanhood Speaks is going to light up the world blue and spend millions upon millions on research to END WOMANHOOD NOW — all while celebrating the kind and beneficent generosity of the men making it happen.

      Is it starting to dawn on you yet?

      By the way, please do not misrepresent what I said. I did not call desperate parents anything, much less attack them. My qualification referred to organisations like Autism Speaks and Age of Autism, the ones that lure in said desperate parents while working tirelessly to advocate the prevention of children like theirs.

      The adjective “genocidal”, as applied to what these organisations advocate, is well in line with the legal definition of genocide as adopted by the UN in 1948 (google it), specifically the bits about “imposing measures intended to prevent births within the group” and “forcibly transferring children of the group to another group”.

      That Autism Speaks are maniacal about their policies also quickly becomes obvious if you read their publicity materials. Their rhetoric is extreme and their dedication relentless. The organisation’s founder has even gone as far as wondering why the US Army aren’t being called in to deal with the autism question.

      So with both “maniacal” and “genocidal” being based in verifiable fact, I believe I am justified in calling them genocidal maniacs. If you find that qualification an attack, perhaps you should try to consider it in proportion with the unspeakable enormity of how that organisation views autistics.

      It has also been discovered by ASAN that Autism Speaks spends only 4% of their ginormous budget on funding actual services for autism families, which rather puts the lie to the whole “find common ground in advocating services if nothing else” argument. There is no “nastier side” to their agenda — the “nastier side” IS their agenda, and the rest is lip service.

      • The point I’m trying to make is that we who “get” it need to the desperate parents that don’t really SEE what is going on with the AS deeper issues because they’re blinded by the desperation. THOSE are the people that need to be approached with care – the individuals, not the monolith AS, but the small pieces in the shadow of the monolith – they hear themselves being called the names that we call the organization, and their ears close because they feel attacked. We need THEM to hear us, because the organizations themselves don’t listen.

        “Sitting at the table” with AS will never work. Jess, and others have tried to move the monolith and it didn’t happen. But chipping away at the fear and desparation with facts – sitting down with the people that don’t yet “get” it – that’s the hard and necessary part. Her point is to wear the monolith down from the bottom. Which I think is something we’d all like to do – obviously faster rather than slower, but it never happens as fast as we want it to.

  9. Right. Sitting at the table with Autism Speaks will never work. It’s been tried and proven to fail time and time again. Everybody knows this by now.

    Therefore, as long as these people are working relentlessly to bring about our extinction, calling for us to pretend to have a single unified community in common with them is (a) asking for the impossible and (b) patently offensive. How is that so hard to grasp? And why is it so outrageous to point it out?

    I’m being told here that asserting my right to exist, the author’s daughter’s right to exist, every autistic person’s right to exist, by speech alone, turns me into a “political hot potato” — that’s what’s written in this article. But spending countless millions on advocating and bringing about the extinction of autistics does not make *them* politically untouchable? I’m supposed to seek “common ground” with them? I don’t even have words for how offensive that notion is.

    As for helping desperate parents see what’s actually going on, well, I can only agree on the urgent need for that – that’s the reason I’m writing my heart out here. Perhaps a few of them are reading.

    What’s important to understand that nothing is helped by continuing to indulge in desperation. There is no real cause for desperation. Autistics grow and develop differently, but do grow and develop into actual people with actual personalities and abilities – even in spite of the abuse they’re routinely subjected to in the name of “therapy”. This is true no matter how “severe” the autism.

    So you didn’t get the child you expected. So life is hard and unfair. I know the feeling. But you have the child you have, and she needs you. Spend a month grieving if you must, but then *please* get over it and start getting to know your actual child rather than trying to turn and twist her into something she’s not.

    The other day, this blog’s accompanying Facebook page had a nice, simple, everyday example of what I mean. The story was that the autistic daughter was asked to come and play, but was busy watching TV, and agreed to come and play “after the dot com”. Not long ago, such apparently nonsensical language would have been rejected as yet another sad manifestation of the tragic prison that is autism. But, instead, the author decided to sit back and pay attention. And sure enough, there it came: “…please visit us at sesame street DOT COM.” Show over. “Now it’s time to go and play.” And suddenly, autistic communication was making sense.

    So, you see, there may be no cure for autism, but there is a cure for being blinded by desperation. All it takes is sitting back, opening your eyes, and not rejecting what you see.

    • I tried, but apparently failed, to make clear that I am not attempting to call “for us to pretend to have a single unified community in common.” I agree that it’s impossible and I understand why it would be viewed as, as you put it, patently offensive, to suggest otherwise. That was precisely what I was trying to convey when I wrote,

      “Don’t get me wrong, I don’t believe that we have to agree on everything. Or even much of anything. I don’t even think we have to agree on what autism is. Which is good, because I don’t think we ever will.”

      And, while I understand why it might feel this way, I do not believe that the following is accurate:

      ”I’m being told here that asserting my right to exist, the author’s daughter’s right to exist, every autistic person’s right to exist, by speech alone, turns me into a “political hot potato” — that’s what’s written in this article.”

      Nowhere in the post or on this blog or its accompanying Facebook page am I asking you or anyone else to stop advocating for autistic rights – rights to exist, to thrive, to be fully recognized, valued and HEARD. God no. Quite the opposite in fact. Nor am I, in this post, asking anyone to embrace goals that are abhorrent to them or to support, well, anything really.

      What I did ask was if there was a place that we might have a common goal. Not a common identity, not a unified vision, not the prioritization of said goal, but a single area in which our individual Venn diagrams of goals might overlap so that we can advocate for that one goal simultaneously. And I asked if perhaps it might be in the provision of support.

      That, to my mind, is very different than, in any way, shape or form, agreeing to the totality of anyone else’s agenda.

      Thanks again for continuing the conversation. I appreciate the opportunity to clarify my writing and intentions when they’re not clear.

      • Jess, thank you for the clarification and for hearing me. I do appreciate it, and I understand what you’re saying.

        But I still think there is not even so much as a common goal with the likes of AS. As I said, they may pay lip service to advocating services and support but the evidence is that their real goal is clearly elsewhere.

        The thing with lip service is that it’s not sincere and comes with strings attached. Once you have associated with them in pursuit of the supposed common goal, you’ve been pulled in: you’ve legitimized them and can no longer effectively oppose their real goal. That’s what I meant when I said: there is no common ground there that won’t sully you.

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