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Weight of the World

  • Posted on April 11, 2012 at 8:09 AM

Sometimes I wish Rachel had never drawn my attention to the incendiary issue of Autism and Empathy.  It’s not that I actually prefer ignorance.  It’s just that I have enough to grapple with in trying to understand the ludicrous human phenomena known as prejudice in its most general sense.

How can anyone think that the set “people with autism” fits inside the set “people who lack empathy?”  Why should they come in to the arena with this assumption?  Why should they work so hard to try to prove themselves right through science?  Obviously, they never met my son Willy.

He’s thirteen years old and he carries the weight of the world on his bony little shoulders.  The “autists lack empathy” camp would have you believe that because he is atypical in his social and communication development that he lacks empathy.  Yet, he feels so strongly for others that, if anything, his reactions are inappropriately grand.  Willy’s quick to apologize for the slightest wrong he does, even if that “wrong” was not of his doing nor his responsibility to do.

On the other hand, there’s our fifteen-year-old.  It’s not that he’s not empathetic, but he tends toward the irresponsible.  In short, he’s a teenager.  He lives so much in the moment that he doesn’t consider the consequences until they catch up with him.  By the time they do, he’s often at a loss for how problems got so big while he wasn’t paying attention.  We have to lay it out for him.

Easter Sunday, after a week of blowing off his family and his responsibilities in order to spend time with a friend (or complain about being bored when he wasn’t), things came to a head when our fifteen-year-old announced he was going over to the friend’s house—that he had to.  On Easter Sunday.

Mark’s reaction was explosive.  Brandon’s counter-reaction was equally explosive.  I was downstairs with headphones on when Willy came running to tell me, with tears streaming down his face and sobs heaving his chest, that “Daddy and Brandon are fighting.”

So, I go upstairs, assess the situation, and help put things into perspective for Brandon.  Tears and repentance and forgiveness followed.  All’s well that ends well, right?

Except that wasn’t the end.  Not for Willy.  Willy carried that fight with him throughout the long day, bursting into tears any time the memory flitted through his mind.  He took the guilt for what Brandon had left undone on to himself—“If only I had helped Brandon…”

The toxicity of a relatively brief fight stuck itself inside Willy’s mind and heart.  The memory itself was enough for him to feel how badly upset his father and his brother had been as if it were still happening.  And it hurt him and he bore the guilt of it, even though none of what happened had been his doing or his responsibility.

Now, for us, the lesson is that we really need to do better about the fighting.  Beyond that, though, this makes me wonder anew how anyone could claim Willy lacks empathy for any reason, let alone because he’s autistic?  I find the claim completely unfathomable.

Review: The Uncharted Path

  • Posted on November 25, 2011 at 12:00 PM

Rachel Cohen-Rottenberg’s book, The Uncharted Path: My Journey with Late-Diagnosed Autism, is a memoir detailing Rachel’s journey of self-discovery as per her diagnosis of autism at age fifty. This is a self-published book available in soft cover and e-book formats. The majority of the book is text written in the same style as Rachel’s blog, Journeys with Autism, but there are also illustrations.

Rachel’s experience of self-discovery and self-acceptance makes for a poignant tale. In this book, readers will travel with her through an abusive childhood into adulthood and parenthood, and finally to her discovery of autism, her discovery of self and her discovery of acceptance. Rachel paints herself as a determined achiever in early adulthood, taking on the tasks of career, marriage and parenthood with a serious energy while still struggling with experiences only clarified by her new-found understanding of autism. As she reaches her limits, she depicts her burn-out in vivid detail, wrenching herself and her readers away from the life she had to a life of drastic limits. Then, slowly, painfully, she comes to terms with those limits while also pushing herself forward—not to do more than she can, but to be accepted in a society that does not yet understand. As a memoir, her story is simply told, but beautifully written—it is approachable, understandable and organized, with a hint of elegance showing through her love for words.

More than simply detailing these experiences, Rachel reflects on them, she expounds on their significance to her and she encapsulates her discoveries in a way easily shared with and translated for others. In the course of telling her story and trying to share the meaning she found, Rachel has created a memoir that’s also an act of advocacy. In retrospect, Rachel describes how her life was an autistic life all along, even when she knew nothing about autism. She shows the struggles she’s faced, knowing that others face similar struggles. From bullies in childhood to the confusion of the adult social environment, from the societal conviction of her brokenness to the discovery of her deficits as strengths, she counters the general awareness surrounding autism and challenges many preconceived notions held by the general population. For those active in the autistic adult communities available online, these portions of the text will seem straightforward and well-written. For others, these portions of the text will be revelatory. Rachel’s journey through her uncharted path won’t convince everyone that autism isn’t a tragedy—that autism itself does not have to be—but it is a successful work of advocacy, because Rachel makes her point honestly and effectively, sure to reach those who are truly willing to listen.

Rachel’s writing is beautiful and vivid, capturing telling moments and showing them to readers in the sense of that moment, but also expounding on them in a big-picture context. This combination of showing and telling makes for a moving memoir that is also a work of activism and advocacy.

Readers who want to understand the autistic experience will get a very detailed understanding of Rachel’s experience, which is only one experience but also provides insights into the experiences of those who are less able to communicate for themselves. Readers who are interested in understanding the self-advocacy movement and the need for advocates and allies will also benefit from Rachel’s cogent arguments in favor of acceptance, accommodation and understanding. Finally, readers who enjoy the memoir genre will find Rachel’s soothing and articulate voice, her commitment to organization and her skill with words a welcome relief from some of the poorly executed works available on autism. Her story is a captivating tale that will widen readers’ understanding and experience, even if it does not change their minds. That said, no book is perfect and while Rachel’s book ends where it does for good reasons, this book definitely needs a sequel. Luckily, it has one.

Imminent Burn-Out? (Part 4—The Next Word and Resolutions)

  • Posted on November 21, 2011 at 12:00 PM

Again, I knew I was adjacent to the autism spectrum, I read about Rachel’s experiences, and I panicked.

The threat to autistic children is real. The threat to autistic adults is real. Combine the two and the threat becomes even stronger. And these threats apply directly to my family. This is why I fight. This is why I advocate. It’s not the only reason, of course. If my family was suddenly safe from all future threats, if we got a pass on all the discrimination and prejudice, well then I’d still fight—because nobody should have to face this kind of threat. But we do. It’s real. Right now, my boys cannot advocate for themselves on this level. They cannot face down CPS and win. They shouldn’t have to; I shouldn’t have to. But I had to and I did, but if I had to do all over again, with the loss of functioning that Rachel described, I would lose. And that possibility is incredibly scary. The consequences for my children are terrifying.

Reading Rachel’s words, I felt this terrible ticking clock hanging over my head. I drive myself hard—too hard. I know that. Everybody who knows me (in-person) knows that. Periods of burn-out, of being too tired to keep up, of running out spoons, of hiding in my basement office to avoid the very loud noises my children make when they’re all playing in parallel—these things are inevitable, and as long as Mark and I are a team and I can keep up my end of the bargain, they’re just part of the flow of our lives.

But what if I couldn’t keep up? What if it wasn’t temporary? What if it stretched on for months or years? Pardon my language please, but my thoughts could best be summed up: Oh shit! Is that going to happen to me?

I kept reading. I finished The Uncharted Path and moved onto Blazing My Trail and…I kept reading, sighing in relief. While I don’t mean to minimize the significance of burn-out, the dramatic shift in abilities got a new explanation in Blazing My Trail. They were due, to a great degree, to a medication she took that made things worse instead of better.

The relief was palpable. I know with certainty never to take that drug. Besides, I’m horrible about taking daily medications. And I try medication only as a last resort—or after significant experience that it will be necessary, such as with bronchitis and antibiotics. And, well, the only time I found a psychological medication (for example, an anti-depressant) that didn’t provide more side-effects than positive effects was when I had that terrible reaction to a birth control shot that lead to a serious case of post-partum depression. The drugs then were just a temporary fix to get me by until the birth control hormones were out of my system and it was only effective because my depression was more poignantly chemical than usual and far stronger than I usually experience.

So, avoid drugs—check.

But, that’s not enough. She also described a plan that helped her regain abilities she’d feared she’d lost forever. It was simply a matter of taking care of herself and being responsive to her distinct needs.

Now, that’s not as easy or as obvious as it sounds. Not for me. I’d always thought that I should be my lowest priority, after family, God, work, school, friends, etc. I knew I had to sharpen the saw and all that…but that didn’t make it a priority, did it? Not really. Certainly not.

This scared me into reevaluating and reassessing the importance of my own well-being. Because, yes, actually, I am a priority. As a caretaker, I need to take care of myself so I can continue to take care of others. It seems obvious. In fact, I knew it, on an intellectual level. Reading Rachel’s story has made it visceral.

So, take better care of myself—check.

I can’t stop pushing myself. There’s too much to do. But I don’t have to push myself so hard that I break. I don’t have to ignore my own needs and well-being. In fact, if I pay attention, I’ll be able to do more, because I won’t get quite so tired.

But, wow, was it a scary, rocky trip—and I didn’t even have to live through it!

Imminent Burn-Out? (Part 3—My Panicky Aftermath)

  • Posted on November 18, 2011 at 12:00 PM

So, I knew I was adjacent to the autism spectrum and then, I read Rachel’s The Uncharted Path. I read about how she once had a lot more functioning capabilities, which she lost, and how she attributed that loss to burn-out.

I admit, when I first read that, I panicked for a good, long while. I wrote a lengthy post in near-hysterics about what Rachel said and what I feared. The post was highly emotional, a bit incoherent, and I asked my husband for his opinion before posting it. He agreed that I shouldn’t post it at this sensitive juncture (a reference you will either understand or not).

You see, it’s not that I’m afraid of being disabled. I’m not afraid of losing the ability to do things that I can do now. For me, unless I die very young, that’s inevitable. I’m a writer and I’m already showing signs of arthritis. I’m 32 years old. I use my hands and brain, almost exclusively to any other part of my body, for hours at a time several times a day, every day. So, unless I die young or arthritis is cured, I will lose the ability to work as I do now. I’ve looked ahead to that future, acknowledged that it will slow me down, and committed myself to not letting it stop me. If I lose enough functioning to be diagnosed on the autism spectrum, I can do the same. It’s not me I’m worried about.

There is a powerful, local government agency that has the authority—with few checks and balances—to remove children from the home of their parents. Here it is called Child Protective Services. For most of my teenage and adult life (the parts of my life that I was at all cognizant of their work), I was fully on-board with their mission. I’ve seen abuse. I know what it does to kids. I’ve seen kids have their lives ruined by abusive parents. I’ve seen some kids reclaim their lives, either as children or as adults. I’ve seen some people who struggle with reclaiming their lives every day of their lives. And I’ve seen some people who either don’t know reclamation is possible or have given up or continue to live in abusive situations their entire lives. I’ve seen it. I know. So, how could CPS be a bad thing?

For the same reason that autism advocacy is necessary at all. I was told: “No family should be burdened with three children with autism.” I was told: “The goal of therapy is to help your children become indistinguishable from their peers.” The person who said these words had tremendous influence with the local CPS agency, and when we didn’t comply with her “suggestions” to prioritize normalization or clinicalize our home, she called CPS—repeatedly. And they sided with her—completely. If they could, they would have removed the boys and put them in group homes for children with disabilities where they would live until they were normalized enough to be put into foster care. This was explained rather explicitly. Luckily, they couldn’t fabricate a case strong enough to make that happen.

But what if I burned-out? What if I became sufficiently disabled to qualify for an autism diagnosis? It would all start up again. The person in question would, if she became aware of it, begin harassing my family all over again. And I don’t think the autism advocacy movements have made enough progress for my family to survive the encounter.

So, I panicked.

Imminent Burn-Out? (Part 1—Where I Stood)

  • Posted on November 14, 2011 at 11:29 PM

I recently finished Rachel Cohen-Rottenberg’s books, The Uncharted Path and Blazing My Trail. I’ll do a full review of each book, I promise, but those will have to wait. Right now I must address one urgent issue particular to those adults who either are on the autism spectrum or those who, like me, are close to being autistic, but don’t quite meet the diagnostic requirements.

As I’ve said before, and will again, I have many of the traits attributed to autism, including sensory processing difficulties, language processing peculiarities (a marked difference between speech skills and writing skills), and social processing difficulties. Were it not for the facts that autism (as it is defined by society) is a disability and that many people with legitimate diagnoses of autism struggle much, much more than I do (including all three of my children) and that I feel expressing my experiences as being equivalent to their experiences would detract from their struggles…were it not for these things I would feel wholly comfortable calling myself autistic.

Before I discovered autism in order to understand my children, I had never really understood what set me apart from my peers. I never understood myself. I’ve never felt I belonged in a community better than I belong with autistic adults. While I’ve always (as far as I can recall) understood that people have different gifts and different abilities, before I discovered autism I’d always more or less assumed people experienced the world in more or less the same way. I just wasn’t very good at coping with it.

Compared to the ideal neurotypical, I’m still not good at coping with it. Compared to the struggling autist, I am quite good at coping with it. And, that’s the thing. As far as I understand current diagnostic standards, I don’t qualify for a diagnosis of autism because I cope too well. I’m not disabled. Sure, coping is hard work. Sure, there are some days when I just don’t want to cope with the outside world. There are days when I dread answering the telephone, and would much rather the person trying to contact me via a letter or an e-mail. Sure, I freeze in social situations most people take for granted. But, when it comes to traversing my day-to-day life, and getting by in the world at large, I can cope more or less successfully.

(This is not some sort of gloating self-congratulatory baloney. There is absolutely nothing wrong with being disabled—except for the lack of acceptance, accommodation, and appreciation from the world at large, but that’s a problem with the world, not a problem with being disabled.)

The point is that I cannot, in good conscience, consider myself disabled. I struggle, but I can cope without the kinds of accommodations others need to cope. Sure, those same accommodations would make coping much less work for me. But I can do it on my own, with my own self-provided coping mechanisms and accommodations. There are many people who can’t and they deserve the focus of the autism community much more than I do.

I’ve struggled to communicate this position of being between to my readers, my family, my friends, and anyone else who has a need to know or who just might be interested. I was confident that I’d gotten it down (though there are still those who want to call me autistic and those who are offended when I consider myself close-but-not-quite).

But, perhaps it was time for my understanding to change.