Journeys with Autism » Friendship

Neurodiversity, Grief, and the Normal Minority

Rachel — Wed, 18 May 2011 13:24:53 +0000

“The worlds created by the human imagination are far more coherent and structured than the real social systems in which we live, and the mental constructs by which we make sense of society are only loosely related (sometimes inversely) to what is really going on. We take these conventional views of our social system as matter-of-fact, true representations of social reality, but they are socially constructed realities, human artifices whose purpose is to perpetuate society, not clarify it.”

— Robert Murphy, The Body Silent, page 30

I’ve been having a discussion lately with an email correspondent who was mentored by Robert Murphy, and who is himself disabled. He asked me about my feelings concerning the neurodiversity movement, and his questions gave me a chance to further understand the complicated nature of grief and disability. Some of my thoughts in this piece come directly from my portion of our emails, and others reflect the places that my thinking has gone in the midst of our ongoing discussion.

I want to be clear that I agree with many of the core tenets of the neurodiversity movement, which I consider to be no different than the core tenets of the disability rights movement, or any other human rights movement — that all people deserve respect and safety, that all people have the right to be front-and-center in conversations that affect them, that personhood should not be defined by an arbitrary standard of normal, and that there are many ways of being, learning, thinking, and perceiving. However, I no longer identify myself with the movement, in part because I saw how easily I was beginning to slip into polarizing positions that I now consider untenable — such as the absolute insistence that autism is so essential to the person that, by curing the autism, you want to get rid of the person.

I can understand that position; it very aptly describes how I feel about myself and the way in which autism is woven into the fabric of who I am. I personally don’t wish to be cured; were you to take away the autism, I would be someone else, and I do not wish to be someone else. What I wish for most fervently is to feel welcomed as an equal, just as I am. However, these feelings derive from my personal experience. There are a lot of different manifestations of autism; some people do not feel especially happy with being autistic, and some autistic people would like to be cured. Would I prefer that all autistic people be happy just as they are? Sure, but I don’t have to live in their bodies. I just have to live in mine.

And then, of course, most able-bodied parents who hear an autism diagnosis begin grasping at straws about how to proceed, because nothing in life has prepared them for going down the road ahead of them. When you combine the fear, uncertainty, doubt, and dread generated about disability in general with the fact that few able-bodied people understand the experience of disability at all, is it any surprise that most parents grasp at the “cure” straw at one time or another?

When you’ve got a parent in this position, responding with “cure the autism, destroy the person” is extremely counterproductive. It only ends up sounding like an indictment. Parents feel pushed up against the wall and criticized, so they stop listening at the very moment that they most need to hear from us.

Of course, there are people seeking a cure who take extreme positions, and who believe that autism is the worst scourge to hit mankind since the Black Death. And there are people who lose themselves in their anger that life didn’t work out according to plan. There is really no talking to people when they’re in that state of mind.

But a lot of people are on the fence about the cure issue, and they’d be open to a conversation if they felt that we respected where they are in their lives.

What’s most lacking in the conversation about a cure, from the neurodiversity perspective, is the acknowledgment that parents of autistic kids go through a grief process. I have to admit that I feel a lot of discomfort when I hear parents talking about grieving their children’s autism; sometimes, I just want to yell, “Are you grieving me? Because I don’t need your grief. I need your respect.” But, whatever my feelings on the matter, it’s essential that the grief process be recognized and respected if we’re to have any kind of constructive conversation at all.

From what I’ve observed, the grief comes from three different sources.

The loss of the idealized normal child
This grief is largely about the parents. I’m not saying that as a judgment at all; in fact, I understand it completely, and I’ve experienced my own version of it when looking at my idealized self. The way that parents hold on to the imagined normal child derives directly from the fact that, in American society, being normal is the most important value. The socially constructed idea of normal exercises a tremendous hold on the imagination. Aspiring to be normal is more important than aspiring to be a great teacher, or a brilliant researcher, or a bringer of peace to a war-torn country. In fact, it is considered to be the prerequisite to doing just about anything else. And that is because anyone who is even minimally aware knows what normal looks like, understands that he or she is supposed to aspire to it and, at one time or another, believes that normal and natural are exactly the same thing.

Of course, they aren’t. Normal is a social construct, first and foremost. In every society, it’s a different creature. In 21st-century America, normal looks something like this:

Walking is normal.
Speaking is normal.
Seeing is normal.
Hearing is normal.
Having white skin is normal.
Being a Christian is normal.
Being heterosexual is normal.
Socializing in large groups is normal.
Having an Anglo-Saxon surname is normal.
Celebrating Christmas is normal.
Speaking English is normal.
Having European ancestors is normal.
Being middle class is normal.
Being educated is normal.
Having children is normal.
Being happy is normal.
Believing in God is normal.

Of course, this list is far from exhaustive; after all, being normal is a very complex business. But if you look carefully at even this very partial list, what becomes clear is that being normal is not normative. Anyone with a characteristic not on that list falls outside the bounds of normal, to a greater or lesser degree. Having several characteristics not on that list pushes one further toward the margins. If you put together all of us who do not fulfill all the criteria, you get the majority of people on this planet.

But the illusion by which we live is that most people are normal. This illusion is a prime example of Murphy’s assertion that “the mental constructs by which we make sense of society are only loosely related (sometimes inversely) to what is really going on.” When it comes to the myth of normal, those words are especially apt.

And part of what’s “really going on” is that parents of autistic children find themselves dragged, often kicking and screaming, out of the land of normal — a terrain that they had formerly taken entirely for granted. This phenomenon leads to the second source of grief.

Leaving behind one’s own normality
Having an autistic child means that an able-bodied parent can no longer lay claim to being normal. I don’t care if that autistic child grows up to win the Nobel Prize, marry the President’s daughter, and buy a retirement home in the Swiss Alps; the minute a parent gets that autism diagnosis, normal is over. All done. Kaput. Never to return.

You know those angels with the flaming swords, guarding the path to the garden of Eden? They’re the same ones standing between able-bodied autism parents and their formerly normal selves.

You hang out with marginalized people and, sooner or later, you get marginalized. Anyone who has ever been in a public school knows this to be the case. Parents, remember the kids you didn’t want to hang out with, the ones you avoided like the plague, the ones you secretly (or not so secretly) made fun of, the ones by whom you didn’t want to be tainted by association?

Now your kid is one of them — which makes you one of them.

This inconvenient truth is what leads people to scream their heads off about how it must be the vaccines that cause autism, or the environmental toxins, or anything other than genetics because — gah! — if autism is genetic, that must mean that you’re one of us.

I’ll let you in on a little secret: You are one of us. Bwahahaha! Welcome to our world.

Sometimes, I wonder whether parents exclude autistic people from the conversation about autism in an attempt to maintain the illusion of their own normality. Perhaps, in their heart of hearts, they want to believe that their autistic children will never grow up to be us — as wonderful as we are — so that the parents can somehow disassociate themselves from us and return to the grieved-for land of normal. I’m not sure, but it certainly seems that there is a disdain for autistic adults in the autism community that borders on the irrational. I’m not sure exactly where it all comes from, but I think that a desire to avoid being tainted for life by us is certainly part of it.

The fact is that, like it or not, autism parents have entered the condition of most people who live on this earth. Few of us are normal. In fact, the people who fit the criteria of normal are a very distinct minority, indeed. But for this minority, all kinds of accommodations, privileges, and services are available — a point that leads me to the third source of grief.

Feeling frightened about the autistic child’s future
My feeling is that grief is a natural part of the process of having a disabled child and, contrary to somewhat popular opinion, it’s not always about wanting a different child. It’s often about just being scared shitless on behalf of the one you have. You watch your kid getting bullied, you see the pain the child experiences from being made to feel apart, and you worry about whether your adult child will find a partner, have even a small circle of supportive friends, and be happy. And these fears are not unfounded. A great deal of the time, the unhappiness that we face is not caused by the autism itself, but by the bigotry and cruelty of other people.

As a parent, I see nothing wrong with grieving that your child is going to face prejudice and attempts at exclusion for his or her entire life. You’d have to be living in a fantasy world to think that a disabled person is going to avoid all that in society as presently constituted, and the question of the child’s happiness under those circumstances is crucial.

What any parent of any child wants is that doors open for the child, not close. And most people understand that being normal means that you have access to the best jobs, the best educational opportunities, and the widest range of social opportunities. Normal people get to apply to college and, if they get in, they just pay their money and show up. They don’t have to fill out several pages’ worth of information about the accommodations they need and hope like hell that those accommodations are deemed “reasonable” (by non-disabled people, no less!), so that they can go to the college they’ve worked so hard to get into.

No, normal people already have those accommodations provided for them, without even asking. It’s a wondrous thing.

And what happens when you don’t have those accommodations provided as a matter of course? An easy life, it isn’t. It’s natural to grieve that. Of course, the main thing is not to get stuck in the grief and turn your kid (and yourself) into a victim.

So what do we do?
Do we focus on a cure, do we focus on making autistic people “indistinguishable from peers,” or do we work to build a world in which all the people who fall outside the realm of normal have equal access and equal rights? If we set out to do more than one of these tasks, how do we apportion our time and attention?

I consider it vital that we not make autistic people hold all the responsibility for change. Certainly, there is nothing wrong with trying to help an autistic child communicate effectively and navigate the world, but doing so cannot be a substitute for fighting to change social and cultural attitudes about normality. And the reason is simple: We will never be normal, and idle dreams about elusive cures are a distraction from the work that needs doing.

I passed for normal, to a greater or lesser extent, for most of my life. I still can, in certain contexts. Does that mean that my problems are solved? No. Does it mean that I can walk through the world, assuming that I will be respected and included? No. My difference becomes apparent eventually and, given the wrong circumstances, immediately. Being married, having a child, earning a graduate degree, writing books, and owning a house — none of it changes the fact that the quality of my life is deeply affected by the attitudes I encounter regarding my difference, by the degree to which people accommodate it, and by the ways in which people exclude me on the basis of it. No amount of passing, and no amount of achievement, will ever change that.

Autism parents, do you not want to know this?

I have always known that I am different. Others have always known that I am different. At some very blessed and happy times in my life, other people have seen my difference as a very good thing. And at some very low and very unhappy times in my life, other people have found my difference something to be derided, shamed, even beaten out of me.

Over the course of my life, I’ve acquired skills and learned to adapt, but at my core, I’ve never really changed. I’ve always been autistic. My context changed — sometimes for the better, sometimes not — and those changes had a tremendous influence on whether I succeeded at work, in relationships, and with friends. They made the difference between being abled and being disabled. And the impact upon my self-esteem and self-respect was directly proportional to how much support and respect I received.

So, if you aim for apparent normality as a way to resolve your fears about your autistic child’s life, please be aware that you will not fully solve the problem. Yes, helping your child to navigate the world is crucial, but it can’t be the end of the story. Your child will always be different. Your child will always know that he or she is different — as will others. Your child will never blend completely. Accepting a socially constructed reality called normal, as though it is available to your child means, to borrow Murphy’s words, being complicit in one of the “human artifices whose purpose is to perpetuate society, not clarify it.”

Perpetuating the status quo will not help anyone who has left the land of normal. Clarifying the status quo and fighting to change it means creating a world in which many millions of people — including your child — will finally take their place in the full light of human dignity.

Living with an Open Heart

Rachel — Sat, 07 May 2011 15:09:22 +0000

My daughter has been going through a difficult time in these past couple of months. I don’t want to share particulars, except to say that she’s dealing with having been abandoned by someone she was very close to — someone to whom she was a very loving and caring friend. It happened very unexpectedly, without warning, and left us all reeling.

Ashlynne has dealt with some difficult and heartbreaking things before, but there is something going on here that feels much different to me. It feels like a loss of innocence, as though her childhood has abruptly ended. Perhaps it’s because it’s yet another ending — like the end of high school, the end of living at home, and the end of the arc of her first eighteen years. Because it came so quickly and so painfully, it’s resonating across all these other endings.

It’s like a tear in the fabric of Ashlynne’s past. It hurts to imagine her going off to college without the tie to the past that this friend represents. There’s barely a thing that Ashlynne owns that doesn’t have the memory of her friend intertwined with it from the past five years of their lives together. And so, her friend’s absence is always palpable.

We’ve had a number of long talks about the situation, and Ashlynne is aware that she has done nothing wrong. So we’re not spending any time on second-guessing and self-blame, thank God. Instead, we’re starting to talk about the kind of people we are in this family, how it feels when people take and walk away, and how to care for our hearts and minds in these kinds of situations.

I have been in Ashlynne’s shoes many times in my life. It’s in my nature to be helpful. It makes me happy, and it rarely feels like a burden. And even when it does feel like a burden, it gives me satisfaction to carry it. Many times, I’ve been the person to give with an open heart, only to find that the other party is nowhere to be found when my hour of need arrives, or when it’s time to celebrate a joyful event.

I’m not talking about helping by giving money or material things, as I don’t give either away very easily at all. It tends to complicate friendships, and besides, I’m eminently practical and sensible when it comes to both. I’ve never been ripped off or taken advantage of financially, and I never will. In financial matters, it’s in my nature to be deeply suspicious and to exercise an abundance of caution.

But emotionally and spiritually, I flow outward. I used to think this basic approach derived from my autism. I used to think that, because I have neither the ability nor the desire to manipulate people, I’m just open to what they need and how I can help, and that I get blindsided when they don’t reciprocate.

But I was wrong. It’s not the autism at all. My neurotypical daughter, my neurotypical ex-husband, and my neurotypical present husband all operate just as I do, and they’re all just as capable of being blindsided. None of us thinks that life is all about us, none of us holds back from wanting to help people in difficulty, and none of us, in our heart of hearts, really expects things to go as badly as they sometimes do.

My ex-husband used to sum up his relationships with other people by saying, “I’m the guy who always picks up and drops people off at the airport, but when it’s my turn, people just tell me to take a taxi.” I spent a lot of time in that taxi with him, literally and figuratively, over the thirteen years of our relationship, so I know that he’s right.

My present husband is also a very generous person whose first impulse is always to ask how he can help. What’s troubling is how often people take that help completely for granted. He does it all so lovingly, so patiently, and so well that people often think that he’s some sort of higher being to whom it all comes naturally. They’ll recite an encomium on Bob and what a wonderful person he is, but deep down, most of them have no understanding whatsoever that he has worked very, very hard, throughout his life, to have the spiritual and emotional discipline to do what he does. It’s not something you’re just born being able to do. Yes, he’s got some great raw material to work with, but without all his years of spiritual and emotional work, all that great raw material would have come to nothing.

And what’s even more upsetting to me is how few people understand or appreciate how much the giving takes out of him, and how much support he needs.

And my daughter is all about counting her blessings and wanting to share them with others. She is welcoming, generous, and caring. I don’t think it ever occurred to her that what just happened was a possibility. Sure, people can have a falling out, but you’ve got some warning there. You know that things are not good, and you’re in conflict. In this situation, there was no warning. Absolutely none. It just happened, like a piano being thrown out a fourth-story window and barely missing your head.

It tears my heart out. It really does. I feel sad, and I feel well and truly pissed, too.

But all I can do, in addition to supporting Ashlynne emotionally, is to work through the current issue with an eye to how to approach these situations in the future. So I’ve been reflecting on relationships lately, and on the things I’ve learned that might be helpful to Ashlynne as she enters adult life.

There are some situations in which you can make a conscious choice to give, without any expectation of reciprocity. That’s a very high ethical level of giving, and perfectly appropriate in some situations. It’s not a bad way to live, so long as you’re aware of what you’re doing and why.

But you can’t base a friendship or an intimate relationship on that kind of imbalance. There has to be reciprocity. So I’ve learned, over the years, to scope people out better. I don’t just pour out all my giving at once anymore. I see what the other person is capable of, and I try to match it. It’s never perfect, but I’m getting better at it. So I’ve suggested to Ashlynne that she stay mindful of holding a balance and that, when the balance is upset, that she be aware of it and how to bring it back to center.

Of course, part of what feeds an imbalanced relationship is a failure to articulate needs. When I don’t assert my own preferences, I have no way to gauge the other person’s level of commitment to me and what he or she is truly capable of giving. In the absence of that information, there is no way to adjust the level of giving in a friendship. I just end up “on” until the other person is done taking or I’m exhausted, both of which often happen pretty much simultaneously.

It’s been good to look at these things, because it means that I can help my daughter along the path. But in the final analysis, everyone in this family is going to be open to the kind of hurt that Ashlynne is going through right now. I don’t think there is any way to completely protect against it without closing off and distorting our true natures. We can take steps to avoid these kinds of situations, but we’ll never be immune to them, because we will so often take the emotional risks that come with doing the right thing.

I’ve come to accept the situation for myself, to some degree, but I’m having a much harder time accepting it for Ashlynne.

In my worst moments, I feel like an absolute fool for having raised Ashlynne to be a kind and ethical person. In the past week, I’ve actually thought to myself, “What an idiot I’ve been! If only I’d just said to her, ‘Honey, just go out there and take from the world. Giving is for saps.’” Instead, throughout her entire childhood, we discussed Torah, and did role ethical playing, and made a commitment to being the hands of God in the world. Sometimes, it feels as though I’ve sold my daughter a bill of goods.

But I know I haven’t. I know I’ve taught her about what’s highest and holiest in life. The solution to the madness of “me, me, me” isn’t to become part of the problem. If I’d raised my kid that way, I’d have done major damage to her essential nature — and to mine.

So am I a fool to be giving in a world in which so many people just take? Perhaps. But I’m beginning to realize that if I’m a fool, I’m a fool in the service of what’s right. I’m not big on the question of belief in God, but I am very big on my experience of God, and doing right is the experience of God in the world for me. In the eyes of the world, maybe I look like a fool to think about giving before taking. But I’m learning not to care. Doing what’s right makes me feel safe, and sane, and connected to something greater than myself. The opinions of other people really can’t hold a candle to that feeling.

So screw the wisdom of the world. Yes, there’s a lot of difficulty and disappointment on this path, and sometimes, I wish I could save my daughter from it. But I know that I’d be interfering with the beauty and wonder of who she is, and with her connectedness with all that is, and that, I will never do.

Welcome Among Us, My Friend!

Rachel — Wed, 12 Jan 2011 16:03:06 +0000

I’ve known Isabel for over 20 years. We met when I was living in California and, even though we haven’t seen each other in a long time, we’ve kept in touch.

Several months ago, Isabel started reading my blog, and a great many things started to make sense to her about her own experience. She started having those “Aha!” moments that so many of us adult Autists have when we read about one another’s lives. And, like so many of us, she started reading widely and deeply about autism until she became convinced that she’d found the key to a great many of the challenges and mysteries of her life.

Recently, Isabel’s insights were confirmed by an “official” assessment. When I logged in this morning, I found the following comment on an earlier post, which I’m sharing with her permission:

Rachel, just letting you know that the specialist yesterday did diagnose me with Aspergers/autistic (not sure what exact terminology she will use in the written assessment). I met with her 3 times, filled out lots of questionnaires, took some “thinking” tests. But she also did spend time interviewing me about my life now and in the past. She said something along the lines that throughout my life, I used my intelligence and problem solving skills and inclinations to figure out how to be social (how to smile in public, how to make eye contact, how to respond when someone says “how are you”). I always thought everyone did that! I thought we all were thinking like that all the time. I guess not. I guess some people don’t have to work so hard at it. Reflecting on all this now I feel like I just want to rest from it all, take a long rest.

I feel good about this, although I also know that I still want to and need to figure out what this means in terms of what I need to do and what I need to ask for from those in my life, in my work situation, etc. I also feel that it will be different after I see the written assessment. There are certain things I can’t move forward on until I have that.

I want to thank you again. What a difference you have made in my life. I want to thank you and all the other bloggers out there, all the people with YouTubes about Aspergers and Autism, all the books and websites. You opened this door for me that I did not know was there. After I walked through it, I have discovered this alternate world, with myriad inhabitants, realities, paths, many different rooms, many open fields. A world that I thought was only in my head. It’s out there, it really exists.

I’m overjoyed that you’ve found us at last, Isabel! It’s a great cause for celebration.

Autists, parents, and friends: Please take a moment to welcome Isabel to our community!

Autism Parents: It’s Time to Stand Up With Us

Rachel — Sat, 08 Jan 2011 14:19:44 +0000

I’ve recently had a very painful experience on another site. It’s not the first such experience I’ve ever had, and it likely won’t be the last. I’m not going to mention the name of the site, partly because I like the people who run it, and partly because what happened is not at all particular to them. It happens all the time, and it wouldn’t be fair to call them out specifically without naming every other equally problematic situation. Similar instances are so abundant (and multiply so rapidly) that I’d never get to the end of it.

The site I’m talking about is not someone’s personal blog. What people say and do on their personal blogs is none of my business, really. I mean, if I don’t like what they say, I can just stop reading, yes? No one invited me in, and I can always find the door. However, the site in question is one of the many “autism community” sites that posts articles from folks involved with autism in one way or another. I tend to have more of an investment in those sites, because most of them actively invite participation from all comers and present themselves as being inclusive. I’m a sucker for all that. Truly.

But it’s one thing to say “We want to hear a range of perspectives” and “We’re an inclusive community” and quite another thing to make it safe for everyone to participate. When it comes to places being safe for all comers in the autism community, we Autistics tend come in last.

I’m pretty certain that most people who read my blog can come up with any number of examples of what I’m talking about. In fact, these experiences are probably the reason that a lot of people come to my blog, and others like it, in the first place. But for the sake of clarity, I’m going to be specific about the kinds of things that make places feel unsafe. In addition to references to autism as an “epidemic,” these things include, but are certainly not limited to, posts and comments in which the writer says the following:

How disappointed the person is to have an Autistic child
How angry the person is that his or her Autistic child isn’t “perfect” (and yes, that word gets thrown around a lot)
How altogether unfair it is not to get the child the person dreamed of
How getting an autism diagnosis is like finding out that someone has died
How autism is analogous to a fatal disease

Now, I’m not saying that it’s not okay to feel these things. Everyone is human, and everyone has the experience of life not aligning with their deepest hopes and dreams. That’s where grief comes from and, trust me, we Autistics have had these experiences—not because something is Terribly Wrong With Us, but because we once had a dream that the world would love and respect us for who we are, as full human beings with a complete set of human feelings, and the world seems bent on reminding us that it just ain’t happening.

So yeah, we totally get it. Truly. And as I said, it’s fine for people to have these feelings. What’s not fine, to my mind, is to create a forum that is supposed to be inclusive, and then allow people to say demeaning things without a hint of self-reflection or self-criticism. It’s one thing to say, “When I got my kid’s autism diagnosis, it felt like I’d just been told she had cancer, but then I realized how demeaning that is and, for the sake of my child and others like her, I’m not going there again.” I support that. But it’s quite another thing to say, “When I got my kid’s autism diagnosis, I felt like I’d just been told she had cancer, and why should such a thing happen to me?” And when ten, or twenty, or thirty, or a hundred people chime in with a version of “I know! It’s all so unfair!” without any pushback at all from anyone, it just adds insult to injury.

Why do these people say these things? Do they think we’re not listening? Do they think we don’t have feelings? Do they think, in some secret place in their minds, that we really are second-class citizens, of no particular importance? Or do they consider us such a burden that they’ve decided that their feelings trump ours? To tell you the truth, I don’t know and, at this point, I don’t care. Over the past couple of days, I’ve realized that I’ve got to stop asking the Why is this happening? question. It’s a bottomless pit of a question, because the answers all have to do with people’s personal issues and, if we keep waiting until people get clear on their personal issues, nothing will ever get better.

Rather than framing it as a personal issue, I’m going to frame it as an ethical issue, because that’s really what it is. So I’m not going to burn a lot more grey matter on the Why is this happening? question. Instead, I going to turn my attention to the What can we do to stop this from happening? question.

As one of my fellow Autists said to me, just imagine if someone compared his or her gay child’s coming out with a Tragedy of Epic Proportions. There are some people in the world who do consider it a Tragedy of Epic Proportions to have a gay child, but a large proportion of straight people would consider that perspective to be seriously messed up. And not only would they consider it seriously messed up, but they’d take the expression of that perspective as a golden opportunity to say so. It’s not that they’re insensitive to the feelings of people who believe that their gay children are literally headed straight to hell. The pain of that must be excruciating. It’s that they’re sensitive to the impact of this kind of talk on people in the LGBT community and what it does to the lives of living, breathing, fully formed human beings, every minute of every day.

But I have never—and I mean, never—seen any non-Autistic person on any blog, anywhere, stand up and put a stop to this kind of talk about Autistics. I’ve seen Autistic people try to put a stop to it. I’ve been one of them. But not once has any non-Autistic person backed us up by telling their fellow non-Autistics to knock it off.

Usually, when I protest, I get roundly ignored. If I do get a response, it’s generally along the lines of, “Thank you for your perspective, Rachel. It’s very valuable.” When I’m posting on a mom blog, and I share my insights about what the person’s Autistic child might be going through, I love hearing exactly that response. In fact, I only read mom blogs in which people appreciate my contribution, because those moms realize that Autistic adults can give them a perspective that no one else can. But when I’m crying out against demeaning words that harm the minds and hearts of Autistic people, telling me that what I’m saying is valuable isn’t nearly enough. Not even close.

Parents, you have to stand up against demeaning words. You have to push back. You cannot leave it to us to carry this burden alone. When I protested about the situation on the site in question, one of the site owners said, “I think it’s important that you keep coming back here to educate people.” And sure, I’m all for educating people—but it’s a bit much to put that responsibility solely on the shoulders of the beleaguered minority, and to walk away from the responsibility yourself. If you don’t understand that you need to stand up with us, how successful can my “educating” really be? And if you’re a member of the majority, and you don’t serve notice to other people in the majority that you will not tolerate people using words that batter our hearts and minds, they will feel permitted to keep using those words. Forever.

If it were only people of color who had fought for civil rights in America, we wouldn’t have any civil rights legislation at all. If it were only LGBT people who had fought for gay marriage, I woudn’t have lived in two states that have legalized it. The outrage of the majority is necessary to the civil rights of the minority. Always. We can keep your feet to the fire, but we can’t change the world alone.

Look at all the violence against women in our world. Why does it happen? We’ve had feminism, and the women’s movement, and all kinds of powerful women in all kinds of positions of authority, for many decades now, and yet, women are still being battered at an alarming rate. It’s not because women haven’t worked hard to end it. It’s because most men consider it a woman’s problem. Plenty of men do not assault women, but how many of these peaceful men actually get together and say, “We must put a stop to this. We must do everything we can to stop other men from believing that it’s perfectly all right to beat up a woman”? Precious few. They figure that they’re not doing the battering, and that’s enough for them.

It isn’t. And if you really want to make the world better for your Autistic children, it isn’t enough to respond with “Thank you for your perspective” when Autistic people say, “Stop using words that demean and belittle us.” It isn’t enough to be the one who doesn’t use those words. It’s time to start calling out the people who do. It’s time to say, “Stop using those words. They’re not just demeaning to your child. They’re demeaning to my child. They’re demeaning to any Autistic person who hears them, and they’re demeaning to Autistic people everywhere.”

In my own community, there are a number of Autistic young adults that I cannot reach. They do not want to spend time with other Autistics—not because they’re decided that they have better things to do, but because they have spent their lives so battered by the talk of pervasive wrongness and tragedy and brokenness that they are in complete rebellion against being Autistic at all. And I can’t say that I blame them. But these are not people who are “passing” for neurotypical. These are people who are struggling with everyday tasks and seriously in need of support. And yet, they want nothing to do with the very people who could include them in a supportive community.

I don’t think that every Autistic has to self-identify as Autistic; there are plenty of ways to construct identity, and as long as that identity is positive, I’m happy. But we’re not talking about people who have constructed a positive identity. We’re talking about people who are fleeing from themselves and ending up completely isolated, with neither a clear, healthy sense of self nor a welcoming group of people in which to be themselves. And why? Because they’ve heard one, long, unbroken message all their lives that they are one big tragic disappointment, and no one in their lives has put a stop to it.

I will spend the rest of my life helping Autistic people to create a strong, empowered, positive Autistic identity, free of shame and stigma. I know many people in the Autistic community who have the same commitment. And community is crucial; without it, we’re stranded. But creating a refuge is not enough. We have to create a world in which people do not feel like walking disappointments. We can talk about inclusion all we want, but if people feel that their very existence is a tragedy, they can’t even begin to avail themselves of what inclusion really means.

So if your heart is broken by the way the world treats your children, stand up for them by standing up with us. Their fate is inseparable from ours.

Disabled Like Me: An Autistic Woman in Search of Kindred Souls

Rachel — Tue, 11 May 2010 11:42:10 +0000

Last night, I wrote the following article for submission to my local weekly paper. I’d like to get your comments, feedback, and constructive criticism before I send it in. Please let me know what you think.

Disabled Like Me: An Autistic Woman In Search of Kindred Souls
by Rachel Cohen-Rottenberg

If you are a typically abled person, you and I may have a great deal in common. I am married to a wonderful man. I have a teenage daughter getting ready to spread her wings. I love taking long walks in quiet places. I lose myself in creating things of beauty. I knit, I quilt, I sing, and I write. I try to eat healthy food, to exercise every day, to treat people with kindness, and to give a friendly hello to my neighbors.

Sometimes, I succeed. Sometimes, I don’t. In this regard, I am no different from you.

And yet, if you are a typically abled person, we live worlds apart. You see, I am autistic, and there are many things that I cannot do. I cannot go to parties or to restaurants; when too many people talk at once, I can’t distinguish one voice from another, and I become overwhelmed. I can’t go into stores with music playing and talk with others, because I can’t filter out background noise. In fact, there are stores in town that I cannot enter at all. The music is so loud that it assaults my nervous system and literally renders me incapable of thought.

I am able to speak, but sometimes, I have difficulty following the words that other people say. For this reason, talking on the telephone is an experience that I avoid at all costs. I have an extensive written vocabulary, but initiating and maintaining a typical social conversation is often beyond my grasp. Sometimes, I can’t find the words at all; at other times, I can’t find them quickly enough. Even when I find the words, I sometimes need to rest for hours or days afterward in order to recover from the effort.

Then again, there are people with whom I “click,” with whom talking is not a particularly difficult challenge at all. And then there are people with whom I am quite comfortable being almost entirely silent.

Despite my challenges, I do not consider myself a collection of deficits. In fact, I consider my autism my greatest strength. I am acutely empathetic and highly sensitive to all things emotional. I experience the visual world quite vividly and intensely. I have a childlike innocence that I value deeply. I am very direct and honest. I do not understand deception or cruelty. I think associatively and visually, and I arrive at insights and solutions impossible to locate with linear logic. I’m creative, intellectually curious, and fascinated by the diversity of the world. Much goes on beneath the surface.

Unfortunately for all of us—for you and for me—the word autism carries a stigma. I can’t count the number of times I’ve told someone I’m autistic and received a response along the lines of “Oh, I am so shocked and so sorry.” I’ve had friends back away. I’ve had potential allies in the community drop out of sight. I’ve seen people stare rudely at the noise-blocking headset I sometimes wear in public, and then I’ve seen them look away quickly, without a smile, without a wave, without acknowledgment that I am just like them, as though my disability has trumped my humanity.

In the year and a half since my autism diagnosis, I’ve learned firsthand what it means to be disabled. I’ve learned what it means to be invisible, to be marginalized, to be apart, to not be able to keep up, to not be understood, to not be seen as a person of equal value. I’ve known deep loneliness and isolation, and I’ve learned that these experiences are shared by many disabled people, whether our disabilities are visible or not.

I am fortunate in having a husband and a daughter who love me, friends spread throughout the country who support me, and places in the local community in which people welcome me as I am. And yet, I long for the friendship of other developmentally atypical people. I see other disabled people around me, and yet, I have not found a way to reach out directly. My sensory and communicative differences make reaching out problematic. And then, of course, there are people in the community with invisible disabilities, who look “typical” but experience the world in atypical ways. How are we to find each other?

I don’t know a better way than to write, so I am reaching out now, in the best way that I can. It matters not how old you are, what your disability is, or at what “severity” level a medical professional has diagnosed you. I am reaching out to say that I am here, that I would like to find you, and that I would like to affirm and celebrate who we are.

If you would like to connect, you can reach me by email at rachel@journeyswithautism.com. And if you see me around town, feel free to give me a friendly smile and say hello. It will mean the world to me.

Rachel Cohen-Rottenberg is a writer living in Brattleboro. Her memoir The Uncharted Path: My Journey with Late-Diagnosed Autism will be published later this year.

Across the Great Divide

Rachel — Tue, 27 Apr 2010 16:20:40 +0000

Bob and I have been having some great conversations lately about the differences between neuro-typical and autistic modes of perception and communication. In the course of these conversations, I’ve felt immensely frustrated, strangely comforted, and very enlightened, sometimes simultaneously. I’ll share the highlights of two of these talks.

The Way Bob Says It Is Not The Way I’d Say It
On Saturday, Bob went to synagogue for the Shabbos morning service, came home for lunch, and then went back for the Torah study in the afternoon. I took a long walk in the morning, in the course of which I met a huge, grey, wonderfully shaggy dog and his person. As you know, I hardly ever take off my headphones and earplugs to talk to anyone, but this dog was just too cool and I had to say something to the woman with him. I knew that I’d last for about a minute or so of conversation, and I did, and it was fine.

The woman who was with the dog obviously loved and appreciated him, and said something like, “You know, he wants to go smell all of these great things and wonders why we can’t smell them, too!” Whoa. Another person who knows that human perception is not all there is. I had been missing these small moments of friendliness with people out on my walks, and as I continued down the street, I realized that I had made the exception for her based entirely on instinct and a sort of childlike delight in her dog. And I thought, “That’s a very good basis on which to make an exception.” When I was done, I didn’t need to go and chat it up with several other people about their canine friends. This dog was an exceptional being, so I made an exception, and it filled me up, and it was fine.

When Bob got home in the afternoon, he told me that he’d run into Fred at shul (the guy who’d magically rendered me invisible) and had “put him out of his misery” concerning my non-response to his email. Fred had copied Bob on his email to me (the one I’d deleted), the email had made Bob “want to weep,” and Bob had gently told Fred that there was nothing he could do to make things better except to keep moving forward. So, of course, the first thing I did was to get defensive about the “want to weep” part, until Bob reassured me that yes, he understood that I was the injured party. And then, of course, the next thing I did was to ask for a blow-by-blow of the conversation, just to make sure that Bob hadn’t put Fred out of his misery without Fred realizing why he was in a state of misery in the first place. I do this a lot, especially when Bob is talking to someone who has been crummy to me. Actually, I’ve been doing it for about eight years now, and it’s gotten old, and boring, and I hate boring, because being bored makes me miserable. This time, though, I’d finally had enough of boring and was able to get beyond making myself miserable. Here’s a synopsis of how the conversation went:

Me: “I’m glad you talked with Fred and resolved things. But did you tell him why things happened as they did?”
Bob: “He understood the whole thing.”
Me: “How do you know that?”
Bob: “I don’t remember all the words. It was clear. He knew what he’d done.”
Me: “But did you use the word invisibility?”
Bob: “No.”
Me: “Why not?”
Bob: “Look, I say things my way.”
Me: “Yeah, but the invisibility thing is really important!”
Bob: [Extremely unsubtle body language that says I'm going to get up and do something else now.]
Me: “Wait, wait, don’t get up! Look, I’m not resolved about this thing. I mean, I told the guy that I needed him to use his words, and that I needed him to be honest, and that I needed him to tell me what was going on, and then he didn’t. Did he understand all that?”
Bob: “Look, I’m not in the guy’s head, and I don’t know what words he’s using to understand things, but he understood that he’d screwed this up and why, okay?”
Me: “Yeah, but how do you know what he understood if he didn’t say so?”
Bob: “I was there. I know.”
Me: “Yeah, but…Oh.”
[Silence]
Bob: “What?”
Me: “This is a neuro-typical thing, isn’t it? You say words, and he says words, and you do this whole nonverbal dance, and you somehow get it, and it’s done, and it’s in your own language. And then you come home and you say it to me. And then I try to translate it back into my language, and it doesn’t translate well.”
Bob: “I think that’s right.”
Me: “You know, from now on, I think you should handle these kinds of conversations. They’re a mystery to me, but you’re very good at them.”
Bob: “Thanks. I try.”
Me: “I know. I don’t give you enough credit.”
Bob: “I know. And you do really well speaking your language to people who understand you. It’s not your fault that neuro-typical people so often don’t understand what you’re talking about, or can’t fathom how sensitive you are or what you need from them.”
Me: “Thank you, honey. I love you.”
Bob: “I love you, too.”

So here was a day in which I came to two very important conclusions: 1) If I’m going to talk to an apparently neuro-typical stranger, keep it short and make sure it’s for a very good reason, and 2) let Bob be neuro-typical and handle things in his own way, because after all, he is completely supportive of my being autistic and handling things in my own way. (I think I’ve got that reciprocity thing down now.)

I Stand By the Side of the Road and I Still End Up In a Crash
The other day, Bob and I were driving down the highway, and I was talking about my frustration with socializing and making friends with neuro-typical people. One of things that became clear is that all of my challenges started showing up when I left the controlled situation of the workplace in 2003 and entered the completely chaotic situation of unstructured human interaction.

In the software industry, I did very well. I lasted 15 years, much longer than I’ve lasted in any other group of people. Because it was a limited, goal-oriented situation, it gave me the opportunity to do one of the things I do best: observe process. I figured out how meetings worked, what people needed from me, how to set limits, how to keep from working overtime, how to get what I needed to do my job, and so forth. I moved from job to job, but each time, I moved to a better job, and I did so based on my reputation, both personal and professional. Plus, working in the software industry coincided with a number of other successes: marriage, parenting, buying a house, and becoming part of a neighborhood.

And then, I left work to become a full-time mom and oy, all my troubles started. All of a sudden, I couldn’t navigate. True, I had entered hostile territory in my old community, but not every single person there was hostile, and a neuro-typical person might have handled the situation with more, shall we say, subtlety? I handled the situation with almost nothing except honesty and directness, because after all, isn’t that what Judaism teaches? Thou shalt not lie? And isn’t that what all my years in therapy had led me to believe I was destined to do—state my needs and feelings with clarity and without apology? So what was the problem? Why was everyone so upset when I kept speaking my mind and getting down to business? The more I tried, the worse it got. I’m not saying that I was to blame. Not at all. I’m just saying that I didn’t understand how to do it any other way.

But now, I’m starting to see that the way I do it has caused me to collide with other people and has allowed them to collide with me. When it’s over, there’s usually a scene of twisted metal and steam rising from cracked radiators, and I’m always wondering what the hell happened. Again. Just like last time. Over. And over. And over. And over.

In the course of my conversation with Bob in the car, I began to understand why this pattern has gone on for so long, and that I am already moving to a different paradigm. Here’s basically how the conversation went:

Me: “I know that neuro-typical people often find me rather blunt and feel offended by me. And it’s very weird to me, because in my sensory and emotional experience of the world, I feel like I’m getting hit with a blunt instrument a fair amount of the time. It’s not that everyone has ill will toward me. They don’t. It’s just how acutely I feel things. Most people don’t know how sensitive I am, and so they can’t understand how they affect me. And I don’t understand how important all their social rules and nonverbals signals are, so I don’t understand how difficult I can be for people to deal with. I just think that all that social crap—I mean stuff—is bullshit.”
Bob: “I know. There definitely seems to be a difference in the way that neuro-typical and autistic people experience bluntness.”
Me: “So how do neuro-typical people experience it?”
Bob: “Well, for us, there are two levels to navigating socially. One level is knowing what you want. The other level is trying to make sure not to crash into people’s sensibilities. It’s as though social life is like driving down the highway we’re on. You have to know where you’re going and how to get there. But if that’s all you know, you’re going to cause an accident, because you won’t be looking in your rearview mirrors, you won’t be watching the flow of traffic, you won’t know when to slow down, or speed up, or let someone into the lane, or pass them. Everything works on a highway if everyone is paying attention to everything. But now and then, you get someone going 95 miles per hour who insists on switching lanes constantly, driving in the breakdown lane, and getting past everyone, because he just has to get where he’s going and that’s all he can think about. That’s when the flow is threatened and people start crashing into one another.”
Me: “Okay, so I recognize myself in the person who just wants to get there. I recognize myself so well that I’ve learned to hang back in a major way and let everyone else go around me. In fact, I’ve gotten out of the damned car altogether, and yet, I still end up in crashes.”
Bob: “What do you mean, exactly?”
Me: “Take the situation with Fred. I didn’t walk into a complicated social situation with Fred. I kept it simple. I know better than to drive a car on a highway. I’ve learned my lesson. I wasn’t even in a car. I was standing by the side of the road, looking at the trees, waiting for him to get done driving hither and yon and meet up with me. After awhile, I realized he wasn’t going to come by and get me, and that made me sad, but I dealt with it. And then, all of a sudden, he broadsided me. I was just standing by the side of the goddamned road, looking at the trees blossoming, and the next thing I knew, I was lying next to the retaining wall and my head hurt really bad.”
Bob: “I see what you mean.”
Me: “You know, whenever this has happened in the past, I’ve thought, well, screw this, I’m getting off this highway and finding me another highway, because the people on this highway are crazed. And then I go and find another highway, and I stand by the side of the road, and bang! There I go, flying through the air, just when I’m enjoying the view. And I think, well, screw this, I’m getting off this highway, because the people on this highway are crazed. But now, after all these years, I can’t keep looking for new highways. They’re too dangerous. I imagine that there must be state police shouting at me on their bullhorns that pedestrians are not allowed on the roadway, and there must be people leaning on their horns as they swerve away from me, and the ones who come a little too close must be larger than they appear in the mirror, but somehow, I can’t see or hear them.”
Bob: “I think that’s true. So what do you do?”
Me: “I need to go find myself a bike path. Not a bike path where people wear spandex and race by you like they’re on the Tour de France. I mean a bike path where people are taking leisurely rides and other people are standing by the side of the road.”
Bob: “Sounds like a plan.”

So how do I find these other souls on this mysterious bike path? Easy. I write an article for my local paper, asking “Where are all the other autistic or otherwise atypical people in this community, because I’ve only met two others, and it’s statistically impossible that we are the only ones here.”

I know, I know. It’s very direct. But that’s just me.

That Old Invisibility Thing

Rachel — Sun, 18 Apr 2010 16:10:32 +0000

Yes, my friends, it’s happened again. I have been rendered invisible. Not by a neuro-typical stranger. Not at the co-op. Not in western Franklin County Massachusetts, the scene of the horror of my collective shunning. Noooooo. I would have expected all that.

No, my friends. I have been rendered invisible by a neuro-typical friend. By a friend with whom I had discussed the whole invisibility thing. By a friend with whom I had discussed the whole “people seeing Bob as a real person and me not as a person at all” thing. By a friend who had read my blog and had made a commitment to getting together once a month, and who had told me that if it didn’t happen once in a while, it was because he was busy with his family and his work, and that I shouldn’t worry, and that we’d work it out and make it happen: his words, not mine.

I know, I know. I’m such an idiot, believing what people say and all that. Like I have a choice.

And the thing is, this is a really nice person. I mean, I may not pick up nonverbals, but my empathic intuition is excellent, and I’ve never gotten any kind of mean, underhanded, not-what-he-seems kind of vibe from this person. He’s just a sweet guy. What could go wrong? So, we got together in December for dinner, and we had a nice time, and he said he was looking forward to more, and then it didn’t work out for January, and the last email I sent was in January, and I hadn’t heard since, but I figured, okay, he’s busy with his family and his work. I let it ride. I was being flexible.

The next thing I know, I get an email from Bob on Friday, in which he forwarded an email from this friend (who I’ll now call Fred). Fred had sent this email only to Bob, inquiring as to whether he might get a grant from our non-profit for a project he’s doing, and whether it might be appropriate to meet just with Bob, or with Bob and me. Did he copy me on this email, or put my name in the salutation, or ask me whether I might want to meet with him, or address it to me in any way, shape, or form? Noooooo. Of course not. And he knows that I am involved in the non-profit because I co-founded it and co-direct it with Bob, and because the last time we gave Fred a grant, he came and talked with both of us together.

I am so done with this shit. So, so done. Every time this happens, I have the illusion that another piece of me has been seared out of my being, and that illusion needs to stop. Now.

So I said, “Time to stand up for myself. No more second chances for anyone who pulls this shit. No more trying to explain it till I’m blue in the face. Time to tell it like it is. For me. Not for Fred, not for Bob, not for God, not for the Man in the Moon, but for me, so that I get to maintain some shred of self-respect.” So I sent Fred the following email:

“Dear Fred,

Bob forwarded your message to me regarding your project. We’ve discussed the matter in detail, and I’m afraid that the answer is no: our organization will not be able to financially support this project, nor any other project you might be planning in the future.

The reason has nothing to do with your project, and everything to do with the fact that you sent your email to Bob rather than addressing it to both of us and sending us each a copy. After everything that Bob and I have gone through–after all the disrespect that people have shown our partnership, after all the discussions that you, Bob, and I have had about it–it was very shocking to me that you would absent me from your initial request. I was especially dismayed by it, given that you had shown a desire to rekindle our friendship, and had expressed a hope that we could meet once a month. My last attempt to set up a meeting with you was in January, and I was giving you the space to be busy with your life, hoping that you would contact me again. I see now that you were not so busy that you could not contact Bob.

I have to say this, straight out: I am a human being. Disabilities or not, I am of equal worth to every other human being on the planet. I have an absolute right to have people respect me, to have people include me, to have people communicate with me in a way that works for me, and to have people take the time to meet me where I am. If people choose not to do so, I will no longer recede into the shadows and apologize for being sensitive, for being disabled, or for being upset. I get to be here, too. As I am.

I more than welcome your continued presence in Bob’s life. I know it means a lot to both of you, and I want it to continue. But if you are now inclined to make any further attempts in my direction–please don’t.

Rachel”

You’ll never guess what happened? Are you ready? I got an email from him. A half hour later. Right after I said, “[I]f you are now inclined to make any further attempts in my direction–please don’t.” What part of that sentence did he not understand? What do I have to do to get some respect from him? Apparently, I have no control over the matter, except to completely absent myself from the situation, which is what I did. I deleted the email unread.

I’m exhausted.

Making Friends with My Eccentricity

Rachel — Sun, 24 Jan 2010 22:10:18 +0000

I went to New York City with Bob for three days last week, and I made a new friend. I know you already know one another (fairly well, in fact), but you’ve never been formally introduced. Kindly forgive the social faux pas, which I will now graciously remedy:

Blog readers, meet My Eccentricity. My Eccentricity, meet my blog readers. My Eccentricity has been around for awhile (as long as I can remember, in fact), but we’ve only recently become close friends. It’s amazing what a trip to New York City will do for you.

And how did I happen to end up in New York City for three days when I frequently quail at the prospect of going grocery shopping in our quaint little New England backwater? It was love. Of course! Read on.

The Incentive: I was tired of being away from Bob for three days every other week. He was tired of being away from me for three days every other week. Spending time with his dad is an imperative for Bob, so the idea of cutting back on these visits never occurred to either of us. The only way to get more time together was for me to get in the car and go to New York City.

The Drive to New York City: It had been about a year and a half since Bob and I had made the four-hour drive to New York together, and I had missed those times. It’s always been great to go for a long drive and have time to talk, joke, and just be together. So, although the drive was completely overstimulating to my poor Aspie nervous system, I made it to the hotel without getting a migraine. The fact that we took the Merritt Parkway, on which no trucks are allowed, went a long way toward keeping my stress at a reasonable level.

The Hotel: The room was nice, the employees were friendly, and best of all, I didn’t leave the place from the moment we checked in until the moment we checked out. Now, it may seem that going to Manhattan and staying indoors was a waste of time, but I assure you, it was not. The sensory minefield of the drive was sufficient for a first outing, thank you, so I decided to make the best of my time at the hotel. I finished incorporating all the review comments into my book, I caught up on my ASL homework, and I made great strides on a sweater I’m knitting for Bob. Plus, the hotel had an awesome fitness room, and I was the only person in it for over two hours. I actually found a way to have solitude in New York City! I should write a book.

And did I mention that Tuesday was our seventh wedding anniversary? It was! So, we ordered in dinner from room service, chose a movie to watch, and…that’s as much as I’m going to say.

The Impact of the World at Large: During the time that we were in New York, the people of Massachusetts made a terribly asinine an ill-advised decision and decided to honor the memory of Ted Kennedy by electing a man who ran on a platform of derailing healthcare reform in the Senate. And what was worse: Every time I went onto the Comcast website to retrieve my email, I had to see a headline about it. Arghh. So, although I knew that I couldn’t cure the insanity overturn the will of the people of Massachusetts, I could do a couple of things to make myself feel better: a) go on a news fast and b) install a desktop email client so that I never have to use Comcast webmail again EVER. I did both. More on how I dealt with the healthcare debacle later on.

The Drive Back to Vermont: After three days, we were very ready to go home. So, while Bob walked to the parking garage to get the car, I ensconced myself on a sofa in the hotel lobby—a sofa that was so big that when I sat all the way back, my feet dangled over the edge of the cushions. I felt like a little kid in a room full of grownups—kind of how I feel all the time, except that this time, I felt very cute. The lobby also got noisy, so it was a relief to get in the car and head back to our quiet lives in Vermont. We left in sunlight and arrived home just as it was getting dark.

My Healthcare Reform Rant: By the time we got home, I was a wee bit very much on the overstimulated side. I was talking a blue streak, bouncing off the walls, unpacking like it was the last thing I’d ever do, and feeling really, really happy and energetic for the first time in a long time. I hadn’t been depressed exactly, but protecting myself from the possibility of overload had left me feeling isolated, and the trip to New York had made me feel like part of the world again. I finally realized (duh) that I don’t have to conform to anything (duh) except the laws of wherever I happen to be (duh), and that I can indulge my eccentricity any old way I please (duh), especially (duh) in the comfort of my own home.

So, because I was royally pissed off by the whole disaster in Massachusetts, I decided to expend some of my rather impressive store of nervous energy by indulging in the following rant:

“What the HELL were people thinking? How can they NOT know how badly this country needs healthcare reform? Are they crazy? What the hell happened?

Oh, I know. They let children vote in Massachusetts. Children. Well, actually, people of legal age with the mental acuity and social consciousness of children.

But wait. That’s an insult to little kids. In fact, I can’t compare these people to anyone, because they’re being so mind-numbingly ridiculous that any comparison to any other group of people would be unfair. I mean, how do you describe people who think that if they get sick, their insurance company is going to cover the costs? And not raise their premiums? Hahahahahahahaha! What planet are these people on?

And how the HELL did Ted Kennedy’s Senate seat end up in the hands of a person whose only aim in life (apart from looking perpetually young) is to derail healthcare reform? I mean, do people have ANY respect for Ted Kennedy’s legacy, for the way he supported the working person, for the passion he felt about healthcare reform? HELLO? ANYONE? Holy shit. I hope they issue an alert for the area around Arlington National Cemetery, because right now, Ted Kennedy is SPINNING in his grave at such a high velocity that his burial place is sure to become the epicenter of a MASSIVE EARTHQUAKE. Maybe then, all those folks in Congress will WAKE UP to the need for universal health care.

But wait! They already have universal health care. Paid for by the US government! Oh. My. God. It’s socialized healthcare. For Republicans. Can the hypocrisy get any worse?

Yes, it can. The Democrats in Massachusetts can blame everyone and everything for their defeat, but last time I looked, Martha Coakley, the freakin’ attorney general of the state, never even ran a freakin’ campaign. What was she THINKING? That the ghost of Ted Kennedy was going to anoint her the Senator from Massachusetts?

Martha, honey. It doesn’t work like that. DUH!! How can you be the attorney general of the state and NOT KNOW THAT???”

I felt better.

The Day After: I went to work at the thrift store. I was friendly. I made conversation. I extended myself. I brought home a quilt to repair. I was still pretty buzzed.

The Day After That: Bob and I discussed how much fun I am when I’m feeling energetic and inspired. And why people with autism so often get diagnosed as bi-polar. And how I really am fine the way I am, however I’m feeling. And that I don’t need to ask the world’s permission to be myself.

And Now? No crash and burn. At all. Just some tiredness and a sense of relaxation. Amazing, eh?

That’s what happens when I go out into the world and stop worrying about what people think of me.

When Our Hopes Get in the Way of Caring for Ourselves

Rachel — Sun, 11 Oct 2009 15:07:57 +0000

Virtually all of us have had the experience of letting our hopes blind us to what is actually going on. There are a few spiritually attuned people in this world who, more often than not, respond to exactly what is happening in the moment, but alas, I am not one of them. Like most people, I get derailed by what I want, by what I need, and by what I fear. And, like most people, I suffer the emotional consequences of the clash between my projections of what will happen and the reality on the ground.

As an autistic person, though, I find that the physical impact of letting my expectations get in the way of my better judgment is often profound. Since Thursday, I have been dealing with the physical impact of meeting with my nonverbal autistic counterpart (whom I’ll call Jenny) and the very kind neuro-typical man with whom she shares a home (whom I’ll call Joe). While there were many good things about our visit, I’ve allowed the good things to get in the way of noticing the impact of the difficulties. Since our visit, I’ve had intense and troubling dreams. I’ve woken up every morning with my heart racing. I’ve been on the edge of a migraine almost constantly. Today, I am finally figuring out that something went wrong, but only because my body has been screaming at me for three days to listen up.

So, I’m listening. What I’m learning is that my very tenacious mind ignored a long series of “uh oh” moments that might have helped me care for myself in essential ways.

Here’s how it started: The week before last, when we were planning the visit, Joe and I had some wonderful email conversations. He is a very good person who is trying his best to understand what Jenny needs, and his emails reflected that. However, there were signs that his hopes for the visit were beginning to get the better of him. I could see his very great need for respite and his very great desire for Jenny to find a friend. A little tiny voice inside me said “uh oh,” but I ignored that tiny little voice.

I know exactly why I did it, too: Joe’s need for the situation to work exactly mirrored my own. I very much wanted to make another friend, and I very much wanted to stretch my consciousness of what friendship means altogether. So, over the course of a week, Joe and I built a picture of what we hoped would happen, despite the fact that I had never met Jenny and she had never met me.

In his emails, Joe had described Jenny as being very easy-going and able to go almost anywhere without a lot of difficulty. On the day of the visit, however, Jenny was quite agitated. I could see it the moment they got out of the car. Joe said that she rarely becomes agitated, and that he wasn’t sure why it was happening. I thought perhaps it was just anxiety at being in an unfamiliar environment, but he said that she’d woken up jittery that morning. That little voice in my head said “uh oh” again, but I told it to be quiet and to stop bothering me.

As a result, I quickly overrode my own agitation and tried to be a welcoming host. I invited Joe and Jenny into the house, where Jenny began to move furniture and grab food out of the refrigerator. I was so intent on being welcoming that I discounted how unsafe I was beginning to feel. Jenny isn’t much taller than I am, but she is one strong woman with a very strong will. It was quite difficult to get her to move away from breakable pieces of my daughter’s artwork. The little tiny voice in my head peeped “uh oh” again, but to no avail. I wasn’t listening.

After a short time, we decided to go out for a walk. Jenny and I walked hand in hand, while Joe followed behind. I understood why Joe was there: he wanted to be sure that Jenny felt safe and that I could keep her safe. I kept telling myself that it was fine, but there was that threesome thing happening, and y’all know what happens to me in crowds of three. Uh oh. I was enjoying Jenny and our walk, but I was also getting overloaded.

When we got back, Joe seemed disappointed in the visit. I got the feeling that he’d been hoping that I’d seem more like Jenny, and that I’d be a kind of bridge between them. So, yes, wanting desperately for things to work, I began to articulate the ways in which Jenny and I were alike. At the same time, I was keenly aware of the fact that Joe viewed me as far more neuro-typical than autistic. And yes, that poor little muted voice whispered “Uh oh, and maybe you should keep your mouth shut now?” but there was no point in ruining a perfectly spotless record of ignoring every last signal to take care of myself. So, I tried to explain that I’m autistic and not neuro-typical, which meant that I was talking far too much, for no good reason, and exhausting myself in the process.

Will I ever learn that explaining myself does not work? (I’m aware that the question is beginning to sound rhetorical, and it concerns me.)

In any case, it’s pretty clear to me now why Jenny felt so agitated. Over the course of a week, the expectations that Joe and I were co-creating had become apparent and Jenny had picked up on them. Great expectations of an unknown situation would make anyone agitated, especially an autistic person who is acutely aware of what is going on around her. The fact that she couldn’t verbalize her discomfort doesn’t mean that she didn’t understand what was happening. I’m sure she did. I’m completely agitated by the whole thing three days later, so her agitation should not have come as a surprise to me at all.

Time to let go. This relationship will not work, despite everyone’s best intentions. That little voice whispering “uh oh” has become rather loud, I’m afraid. It’s now shouting things like “Am I not getting through to you?” and “If you keep on with this, you’ll get a full-blown migraine.”

After three days, I can finally say to myself, “Look, it didn’t work for you, and it didn’t work for Jenny. That’s really okay. Other good things are happening, so just keep moving forward.” My head still hurts a bit, but my heart rate is beginning to return to normal.

My Autistic Life is Looking Up

Rachel — Mon, 05 Oct 2009 17:27:15 +0000

You’ve all been so supportive of me in my grief and frustration these past few months, and it’s meant a lot to me. Perhaps I needed to bottom out a few times and cry a lot of tears in order to open up the space for better things to come into my life. I’m not sure. In any case, all kinds of very promising things have been happening for me lately, and I want to share them. While I’m doing my level best not to get attached to outcomes, I can’t help but feel very positive and excited.

Continuing Support from the Deaf Community
Karen, my contact at the school for the Deaf, continues to be an absolute gem. In every interaction, she listens to me, she thinks about solutions, she gives me thoughtful answers, and best of all, she keeps my spirits up. What’s more, she does it all by email. We haven’t even met in person yet!

As an example of what I admire about this woman, I’ll tell you how she responded when I described my auditory and visual difficulties with the ASL class. First, she said that she’d have no problem finding me an ASL tutor, but that she was concerned about the expense. She urged me to look for some kind of program that would help defray the cost, and she gave me a place to start. She also said that if I hit a snag, I should let her know, and she’d help me brainstorm further options.

Next, she suggested that I get specific information about what kind of volunteer help is needed in the school library. With my sensory sensitivities, she said, volunteering in the library might not work. As it turns out, she was right to be concerned. The library tends to be noisy and full of activity. When I told her what I’d found out, and asked whether she could suggest some other options for volunteering, her response was so insightful and so helpful that I could hardly believe my eyes:

“Oh yes I can think of volunteer opportunities for you! The challenge is finding you something where you control your own interactions with others, I think. The newsletter seems like it could be a good one because you’d be able to correspond mainly via email, control your level of input, and get to know people here at the same time. The drawback is that it’s not going to be a good bridge to you learning sign, because I can’t sign yet either. I’ll ask a couple other people for ideas too and get back to you.”

In a follow-up email, she had even more ideas for things I might do, and I’m excited about the possibilities. I won’t write about specifics at the moment; when we get something definite in place, I’ll let you all know how it’s going.

Meeting Up with Another Local Aspie
I’ve been feeling kind of sad about my relationship with my first local Aspie friend. Our sensory sensitivities and social needs are so different that it’s been difficult to figure out a way to hang out. She’s a great person, and we’ve been continuing our friendship by email, but we’re both disappointed that we haven’t come up with a strategy for spending time together.

Meanwhile, I met another Aspie woman in town who saw my article in the local paper and follows my blog. We got together this weekend, and somehow, we just clicked. The verbal pacing was right, our sensory sensitivities seem compatible, and we have some very specific interests in common. So yay! Another promising beginning.

Plans to Meet Up with Yet Another Autistic Person
In one of the many newsletters that find their way into our house, I saw a classified ad about part-time respite care for a 50-year-old, nonverbal, autistic woman. I wasn’t looking for a job, so I didn’t pay much attention to the ad, except that the words “50-year-old, nonverbal, autistic woman” kept running across my mental screen for weeks. I thought, “You know, I’d like to meet this woman. Why not respond to the ad and say so?” I wrote an email to the person who had placed the ad, explaining that I’m 51, that I’m autistic, that I navigate the world outside my home as though I’m deaf and nonverbal, and that I was hoping to make a connection with the person he’d mentioned in the ad.

Getting any response seemed like a long shot, since I really wasn’t responding to the purpose of the ad. However, I probably should have bought lottery tickets last week, because taking a long shot paid off in a big way. I got a response, and it was a very enthusiastic one, too. Apparently, the woman herself does not use the computer, but she likes hanging out with friendly people, taking walks, going to the YMCA, and so forth. She is in a shared living situation, and the fellow in whose home she resides clearly likes and respects her. Because I’m not driving anymore, he is willing to drive her up to my house when we meet. So I am very glad to have made this connection.

She and I will be spending a couple of hours together on Thursday. I am looking forward to it very much. I don’t feel any sort of anxiety about this new person, which is very unusual for me. When I meet people for the first time, I’m usually quite nervous. In this case, I suppose it’s the lack of social pressure that’s responsible for the happy sense of calm I feel. She and I aren’t going to talk with words, so I will have to find other ways to listen, to respond, and to communicate. Instead of making me nervous, the prospect sounds absolutely wonderful. It will be a challenge, but a good challenge, and something that I want to be able to do. My natural affinity is to people at the margins (no surprise there), and I’m learning to enjoy my own silence, so I’m feeling very optimistic about our time together.

So many possibilities! Good things are happening.