I’ve been going through an especially hard time lately. I’ve been feeling very dispirited, sad, angry, abandoned, and lost. I have days in which I cry virtually all day long. And then, I have days like today, in which I feel more grounded and more focused. Perhaps it’s simply that I got a full night’s sleep last night—the first full night’s sleep I’ve gotten in months. For the past few months, I’ve been waking up at 3:45 am, and then I have trouble falling asleep again. It doesn’t matter what time I go to bed; I wake up at the same time. If I manage to fall asleep again, I have disturbing dreams that are so vivid that I don’t even realize I’m dreaming until I wake up.
A friend of mine asked whether I’m having an extended meltdown—an interesting question. I don’t think I’m having a meltdown, at least not in the usual sense. If what is happening to me is a meltdown, it’s the combined result of all the years of driving myself, all the years of finding no kindness or understanding, all the years of trying so desperately to be what I cannot be, all the years of hating myself for not being what I cannot be. If I’m having a meltdown, it’s the result of all the stressors I’ve battled against throughout my life.
But really, what I’m going through feels more like extended grieving. And perhaps that’s all a meltdown really is: an explosion of grief over the pain of overload, the pain of being alone, the pain of being invisible, the pain of living in a world that is hard to bear.
There are many layers to this kind of grief, and the one I’m focusing on now is the grief of realizing that being autistic means being a member of a hugely misunderstood and maligned minority. I used to think I’d already traversed that territory by virtue of being a Jew, but the experience I’m having now is quite different from anything I’ve encountered in the past. True, I have experienced anti-Semitism, up close and personal, and I’ve met more than my fair share of people who think that they understand Jews because they’ve read the Bible or had a Jewish friend once. I still see plenty of anti-Semitism out there in the world, but for the most part, it doesn’t feel personal. Most people who know I’m Jewish don’t see me as a caricature. They don’t rely on stereotypes when thinking about me. Until recently, I lived my life as a very visible Jew—first wearing a kippah and tzitzis everywhere I went, and then later, wearing a headscarf and long skirts. If someone were going to engage in anti-Semitic craziness, I would have known about it by now. It just hasn’t happened.
The experience of being autistic feels very different. Now that my autism diagnosis is on the table, and I’m making changes to integrate it into the life of my family, I feel like a walking stereotype. People in Bob’s family who have known me for years say things that are completely at odds with their experience of me—that is, when they’re not ignoring me altogether. All that has changed is that I have a diagnosis of autism. That’s all. When people got upset about Bob cancelling his trip, he got responses like the following:
- Does Rachel have as much empathy for you as you have for her?
- Often, it’s the caretaker who suffers more than the patient.
- You should put Rachel first, but not at the exclusion of your own children.
- If Rachel could do everything on her own before, why can’t she now?
If instead of receiving an Asperger’s diagnosis last November, I’d had a stroke and needed to relearn everything—how to go grocery shopping, how to be out in the world without becoming disoriented, how to speak without exhausting myself, how to reconstruct my self-image, how to reconfigure my life so that it works—I sincerely doubt that anyone would have questioned my ability to empathize, accused me of taking up too much of my husband’s time, or challenged me about whether I had actually lost the ability to do simple tasks. In fact, people would have been asking about how they could help.
However, I have a diagnosis of autism, and that makes me suspect. It means that instead of writing and offering supportive words, my relatives pull back and offer almost no direct support. Apart from the email I received from one of Bob’s cousins, the great shining exception to this pattern is my 93-year-old father-in-law. He is very interested in what I write on my blog and talks to me on the phone with great appreciation and affection. Perhaps it’s because we share so much in common. We were once both very high-functioning people out there in the world, seemingly in control of things, and making a Great Success Of It All. Now, he is very frail and can’t possibly do what he was able to do even five years ago. He has had to find new ways to see himself and to enjoy the world. Despite differences in age and neurology, we are going through parallel experiences, and somehow, we’ve been able to extend ourselves to each other.
Within the family, though, he is the exception. When I consider the range of responses I’ve gotten, from silence to anger to suspicion, I find myself realizing that I have now joined the ranks of the invisible, the misunderstood, the maligned, and the burdensome. This time, it’s personal. This time, it’s in the family. This time, despite the fact that I used to ride up front, I’ve been told to go to the back of the bus and stay there. What else does it mean when someone considers me a patient rather than a wife? What else does it mean when, instead of showing compassion for what I’ve lost, someone accuses me of choosing to become disabled? What else does it mean when people direct their words to Bob and not to me, as though talking to me is suddenly an uncomfortable (and therefore impossible) task? It all signals an unwillingness to encounter me as I really am and to show me the respect due to any human being. It means that I have second-class status. It means that I am expected to justify myself at every turn, to reassure people that I will not make them uncomfortable, and to let them know how sorry I am for what a burden I have placed on their shoulders.
Of course, I categorically reject all of this nonsense. I will not sit in the back of the bus, and if anyone expects me to, I will not negotiate. I will not justify myself. I will not explain myself. I will not apologize for myself. I will just get off the bus and walk, in my own direction, and at my own pace. Is it lonely? Hell, yes. But, as Frederick Douglass wrote:
I prefer to be true to myself, even at the hazard of incurring the ridicule of others, rather than to be false, and to incur my own abhorrence.
© 2009 by Rachel Cohen-Rottenberg
we share this goal, to be true to ourselves. it does have its ups and downs, stumbles and mis-steps, but it’s not really much of a choice, given the alternative (self-sublimation), which we both know ALL about.
i think for me, the problem is renewing my determination every single day, to make the same choice every day. that, and refusing to apologize for that which i cannot do, or will not do (after all, if i’m going to do it anyway, it would be false of me to apologize for it)
love,
Ben
I’m glad that you choose to stay true to yourself and not get swallowed up by others around you. As a mother of two children with autism, I know what it’s like to be ignored and feel isolated too, from both family and friends, but for different reason than your own. I have good solid friends..not a whole heck of a lot, but they are the ones I talk to and spend my time with… I don’t waste my time with the others. If people choose not to understand my kids with autism, then I don’t choose to understand them.
I do not know where you might be in your ‘change of life’, but I wonder if the sleeplessness might be due to menopause… both my NT partner and I are dealing with that, she more than me. Much of the emotional fragility you’re experiencing seems very similar to what my partner is going through. There are many days when she wakes up on the verge of tears, and her anxiety levels are higher, she reports, for no clear reason. She has finished with her monthlies, but it seems there is still some internal adjustment going on with the hormones.
I myself am experiencing major anxiety spikes at a certain point in my cycle, and my sensory sensitivities are worse at those times. This is besides the hot flashes, etc. And there’s pretty good evidence now that women do indeed experience temporary cognitive deficits during peri-menopause, so our already impaired executive function might–for a while–be more impaired.
I myself just get up and go meditate at 3 am (my pre-set time). It’s improved the heck out of my practice. LOL
I’m also reading an interesting book that you might find supportive during this spiritually challenging time. Entitled “Acedia and me” by Kathleen Norris, it investigates the ennui that can sap the energy and strength from spiritual practice. Though she uses the writings of the early Christian monks, I am finding the exploration and wisdom helpful… the differentiation between depression and acedia, the ability of acedia to deaden what used to bring pleasure, how it drives us away from the very practices that would give us surcease of suffering. It was a common and devastating affliction of the early ascetic monks, whose life was defined by strict limits and routine… much like yours has become.
In any case, I hope you will be able to receive the gift of each day.
Blessings…
It’s a hard journey to follow but you’re doing a good job. Keep up the good work. the road is really hard. but the reward of being able to be who we are on our own terms, priceless ,worth anything, too bad price is so damn high though
So I’ve picked up a new hobby lately… designing t-shirts on Zazzle.com. And this entry inspired one. Wanna take a look?
http://www.zazzle.com/autism_tshirt-235388981911711473
I came across this the other day, amazing essay by Amanda Baggs. I immediately thought of you. Check it out:
http://www.autistics.org/library/more-autistic.html#learningautistic
Hello,
I’m so thrilled to have stumbled across your blog! I had heard of your book and can’t wait to get a copy of it for myself. I am 20 and was diagnosed with Asperger’s about 6 months ago, and this particular blog entry strikes a chord with me. My family have rejected the whole thing. My brother seemed to accept it and understand when I explained it, he even remembered examples of things like my inappropriate use of facial expression and all the rocking. He started off the discussion with my parents over supper for which I was and still am extremely grateful. However, my parents kept skipping around to blaming my problems on my attitude, my personality, my choice of college course… One of my sisters didn’t respond very much, she didn’t make any big deal of it but decided that just because I was less obviously affected by struggles with empathy than an autistic friend of hers, she decided I had a “less severe” case. My other sister asked me stuff about it, but every characteristic I described got a response like “I have that too” of “Sometimes that’s the same with me” or even “Everybody has that.” So frustrating.
So then I thought, “Right, I’ve told my immediate family, I guess I can tell anyone I want now that they can’t take it personally.” I told my few close friends personally, and they were happy for me for discovering something so important, but I felt that I couldn’t really identify with them on any of it. Then I did lots of research online to find out ways to help myself and people who could empathize with me, and I started seeing all the corruption and labeling and got so angered that I felt an urge to advocate and spread truth and dissolve the myths and stigma people have about autism, as well as mental health-related topics in general. I used Facebook to join with other autistics and, as they all did, I began sharing informative autism links on Facebook while adding a brief mention of Asperger’s to my personal profile. And what happened? My brother and one of my sisters sent me hateful, insulting emails including such sentences as “Grow up” and “People will think that you’re mentally challenged, which is not the case” and so on. Then my other sister claimed that I was annoying her with it, even though I have never forced anyone to read anything I put on my Facebook profile. She chose to read it, and if it bothered her, that’s her problem. Still, though, I persist, and while my siblings grow colder and colder towards me and my parents remain ignorant by choice, I keep posting real information and my own stories to Facebook, and talking about it to my friends, who are actually a lot more calm and mature about it all. I have gained a lot with occupational therapy and counseling and so I will continue those, even though I must keep it secret from my parents as they’ve forbidden me to go near any psychological health professional.
I also agree on a point you made in another post, where an autistic spectrum diagnosis, whether they decide to call it “Asperger’s Syndrome” or “low-functioning autism”, is still autism. I’m autistic, it doesn’t have to be any more complicated than that. Leave the details to the professionals who help me.
Welcome, Niamh! It sounds like you’re on a very positive path, despite the resistance of your family. Keep on writing and speaking out!