Thanks, Trudy, For Hurting My Brain

July 21, 2006 at 12:04 am (Autieparenting, Autism activism, Ethics, Hipocrisy, My Aspieness)

Autieparents is a Yahoo group I started in June of 2005 as a way to meet the needs of autistic parents of autistic children. This is the group description:

There is a point of intersection between adult autistic advocacy and parenting of autistic children. That intersection is called Autieparenting.

Autieparents are often on a two-pronged quest: (1) self-awareness and self-advocacy; and (2) advocacy for and appreciation of our autistic children. Neurotypical (NT) parents who appreciate and respect their autistic child’s uniqueness are also welcome here.

Autistic advocacy can mean many things to many people, but to me it means celebrating the wonderful qualities of autism, while not denying its unique problems and challenges. It means not trying to force autistic people to become “normal.” It means defending the rights of autistic people to be autistic minorities in an NT-dominated world. And it means equal respect for every person on the autistic spectrum, regardless of commonly perceived levels of intelligence or ability. I see the autistic spectrum as a unit, not fractured into splinter groups and hierarchies, so when I speak of advocacy, I speak of advocacy for everyone on the autistic spectrum.

This group will not promote and focus on any single type of method for treating autism. We do not believe in autism treatment in the sense of “curation,” but we do believe that every child–autistic or otherwise–should have access to whatever will help the child realize his or her full academic, social, and emotional/spiritual potential. Discussion of general nutrition and health, as well as education and related services, is welcome.

Above all, the goal is for members to feel comfortable exchanging ideas and venting about the peculiar challenges of autieparenting. Parenting is a tough job, autieparenting is even harder, and autieparenting of autistic kids is one of the hardest jobs of all. I think autieparents need to support, understand, and learn from one another.

Certainly not all of the parents in my group are autistic, but most have either been given an official diagnosis or are so blatantly on the spectrum that a diagnosis is irrelevant. Most of the parents in my group are (at least currently) coping with the demands of being autistic in an NT world and parenting autistic children. There have been some scary posts on scary days, in which a couple of parents have expressed feelings of not being able to go on. Thankfully, nothing tragic ever resulted to my knowledge, and in a way I’m glad these parents felt comfortable enough to express themselves in a safe place. These expressions of desperation, I think every single one of us would agree, have had much less to do with our children’s behavior than with our inability to self-regulate and recuperate on extremely stressful days. Thankfully, these posts have been few and far between, and the overall climate of my group has been fantastic. Some of us have common special interests (one friend of mine loves, rides, and fixes bikes; another friend is the same way with cars; I am a Bible nut, and nobody seems to mind), but we are not tied together by those interests. Instead I feel what ties us together is not only a deep mutual respect and concern for one another, but a dearth of other places to discuss the unique challenges of autieparenting.

While everyone in my group has given me tons of things to think about, there is one person in particular–Trudy–who has blown me out of the water. She recently joined the group, and in the space of a few weeks managed to throw so many ideas at me that I almost asked her to stop (but not because I didn’t like it). I finally said to her one day, “Trudy, you are hurting my brain.” She quipped back, “You are hurting my brain more.” Thus a new friendship began. She started a thread on a verse from the Bible and how it could relate to a science article she had read on the subject of dark matter, and that blasted us into a twenty-something-post dialogue on some of the strangest and most intriguing stuff I have had the privilege to think about in a long time. Even though the thread was wildly off topic, nobody objected to it. Everyone silently allowed us to pursue our perseveration to the bitter end, and it was okay. That is one reason I love my group.

Recently our group has been dealing with some more down-to-earth, more troubling material. I started discussing the death of Katie McCarron, in whose memory this blog was created, and I posted a link to the now infamous video, Autism Every Day. After watching it, Trudy responded this way (with her kind permission I am including her post verbatim):

Seeing this reminds me and over the past few months stuff has been coming back to me, just little snippets from my own childhood–

When I was very young, maybe before I could sit up, I dunno, my mother had my arm put into a cast to prevent me from pulling my hair out. I remember her constantly telling me to “stop sucking my tongue” because it was “so ugly.” Or, stop picking my lip (I know that IS gross but)…

My parents divorced when I was still very young and my dad raised me, so I remember an army of nannies–most of them constantly exasperated. I remember wondering why they didn’t “like” me, why they were always quitting. And then I remember the wonderful people in my life who weren’t like that at all–one nanny who recently died, my aunt and uncle (both dead now), my dad.

I think about how incredibly lucky I was, and my disconnect happens when I imagine what it must be like for kids who might not have those great people in their lives, people who aren’t constantly reminding them that self-calming behaviors are “ugly” etc. And it’s really, really hard to let my mind even wander there–it’s such a terrible place.

I am a grown, capable, person now and I know I “owe” something to young kids whom I feel deeply connected to, but I cannot even seem to let my mind wander to where they must be, let alone get my body doing something actually helpful, active, and useful…

The following is how I responded to her, with some additional notes added later by way of revision:

Dear Trudy,

I have been thinking about this wonderful post of yours all day long, especially after I wrote you a long, painful response from the heart, hit “send,” and received an error message that post #6771 could not be retrieved, thus sending my post into oblivion. It could be that this was meant to be, as it gave me more time to think about what I wanted to say and how to say it.

I want to thank you for picking open a scab of mine, so to speak, in your last post–even though you probably didn’t know you were doing that. Your post made me think about all my personal failures as a parent, and it challenged me to deal with them openly and in a way that will help me (and hopefully others struggling with the same or similar issues) confront my ongoing issues.

Even though I know better, and even though I’m convinced that I am an Aspie myself, I have discovered that that knowledge alone does not prevent my knee-jerk reaction to “correct” certain behaviors in my children, even when to do so is to deny the need for the behaviors (e.g., as you so aptly put it, self-calming behaviors that don’t hurt the child or anyone else, behaviors that are necessary and integral to autism). To correct these behaviors is practically the same as saying, “It is not okay to be you. It is not okay to be autistic. Even though you can’t help what you are doing, I want you to stop.” I read your post, and I saw a lot of myself in your mother and in others who have caused you to feel confused and rejected, because I have been guilty of correcting my sons long after I knew better. The reasons I’m about to give are not meant to be excuses, but I’m offering them as a way to self-analyze and maybe self-correct and/or help somebody else. I sat here this morning thinking about why I have (and do) correct certain behaviors even when to do so is completely irrational and against what I deep-down do believe in my heart to be correct: Namely, that autistics have a right and a need to be different, that our neurological make-up necessitates stimmy behaviors that are necessary for self-calming among other things, that autistics deserve to be treated fairly and with dignity, that it is not okay to squash the rights of autistics in order to appease NT sensibilities in school and in the community, and so on.

So I thought about why I correct the harmless behaviors of my children (not always, but often enough to make me feel like a hypocrite), and I have chunked the reasons into four categories: personal sensory overload, fear/anxiety, embarrassment, and a certain lack of empathy (not a total lack by any means). By the way, you are new here, so you do not know that I’ve been battling my feelings of parental inadequacy and real-versus-ideal disconnect combined with feelings of hypocrisy for quite some time now. I’m still trying to wrestle this demon to the ground.

Personal sensory overload:

I am easily overstimulated to the point of rage by incessant noise, movement, and chaos. Noise that does not make sense to me, either because it is excessive or repetitive or because it is not paired with some kind of language that seems meaningful to me, drives me crazy. Noise that is “for no reason” (even though I know that it definitely has a reason, even if that reason is only self-stimulation of the inner ear) does drive me to distraction. I find myself unable to wrap myself in my own thoughts, and this is particularly bad on days when I am obsessing about something upsetting, something I should have said but didn’t, something somebody else said, an intriguing thought, an unsolved problem, or other things that sap my executive functioning to the point where noises, flapping, or running around short-circuit me and trigger my meltdowns. Meltdowns may include screaming and scolding among other things that are completely unproductive. Dr. Ross W. Greene in The Explosive Child has a term for this: mental debris. He writes:

I use the term mental debris to describe the horrible words that may come out of a child’s mouth during these incoherent moments. [i.e., during a meltdown]

Dr. Greene is correct in his observation that the parents of inflexible-explosive children are often inflexible-explosive themselves, but he does not connect the dots between the parent and the child on the genetic and developmental level. Knowing what I know now about myself (when I first read his book I was not self-aware and was desperately trying to keep my older autistic son out of a psychiatric hospital, which is where I believe his teachers felt he belonged; this was about four years ago), I find the following exchange from his book very out of touch, bordering on the sanctimonious:

“You know,” the mother said sheepishly, “I think I might be inflexible-explosive myself.”

“Is that so?” I replied. “I’m glad you’re sitting down, because I have some very bad news for you.”

“What’s that?” asked the mother.

“I have more faith in your ability to help April be more flexible than I do in her ability to help you,” I said.

One of the reasons I started Autieparents was that I needed a place to sort out my own confusion about how to simultaneously promote autism activism for my children and deal with my own disabilities at the same time. Feeling extremely sensorially overloaded by some of the autistic behaviors of my autistic children presents an ideological dilemma for me, one that I’m still trying to figure out.

Fear/anxiety:

My tendency to catastrophize, which by definition implies an inability to put a situation into perspective, drives me to correct and overcorrect habits that I fear will isolate my children from activities and placements that I believe will benefit them. It is one step beyond the rationalization “I’m only doing this for their own good,” or “I’m just trying to help them.” It is a real fear, a real anxiety, about what will happen if they don’t outgrow it, or if they are kicked out of school for it, or placed in an “alternative school” for it (not excluding schools for the emotionally disturbed), or mercilessly teased for it, or eventually arrested for it. Even though my first autistic son outgrew many of his behaviors–extreme behaviors such as urinating on playground equipment, throwing furniture across the room at school, and physically attacking his teachers and classmates, leaving bruises–that knowledge alone has not prevented me from catastrophizing about my second autistic son, who is currently stripping off his clothes at least a dozen times a day, and who is also continuing to eat things off of the floor and grab his genitals to calm himself down. He is only four years old, and yet I am unable to get a handle on my fears for the future.

Embarrassment:

I once belonged to a Yahoo group in which an autistic woman posted that she cannot understand how some parents can ever be embarrassed by the behavior of their autistic children in public. I was not upset by the comment…all that much…because I knew for a fact that she was autistic and did not have any children and did not particularly like children. I knew for a fact that she could never fully understand what it is like for a child–your child–to do something extremely embarrassing in public and to suddenly have many sets of eyes fixed on you. Of course she could not understand how a parent could feel embarrassed by the feeling of simultaneously being expected to explain the behavior and fiercely resenting being put in that position. She could not know the sting of having rude comments made about her child, or (because of that) the drudgery of having to explain autism to a person who doesn’t really care. So, while I did understand why she posted this, I did not understand what I perceived to be the underlying message of the post: If you are embarrassed by the autistic behavior of your child, you are actually embarrassed to have an autistic child, which means you hate autism. Not true.

Lack of Empathy:

Both of my sons stim. I do not stim in very obvious ways to most people. For example, I pace (violently when on the phone with an important phone call), pump my fists, obsessively “groom” myself, echo certain things I hear on TV (so does my husband), can’t stand the feeling of tags or seatbelts, and rock in the car to music, but basically I can blend in with society and would not generally be picked out of a crowd except by other Aspies. I like to read my own writings a little too much, and I go into manic phases of extreme activity, usually involving a project with lots of heavy work involved. I have been told that the latter is a stim. I do not flap and I do not make loud noises (but I can be loud). I do not look at my fingernails and rock from front to back on my feet. I do not talk to myself. As far as other behaviors go, I do not show my private parts to people. I almost never make physical contact with a new person–unless I really, really like them, and then sometimes I might touch their arm to signify “I completely agree,” and then they will sometimes recoil, and then I sometimes wonder why I did that and whether I saw this communication technique on an infomercial. My sons are a mixed bag of all these things that I do not do, and because I don’t do them, I don’t really know for sure why they do them. I cannot relate to their deep need to do what they do. Yet, intellectually I agree that they cannot help it, that it is part of their autistic make-up, and that much of it is self-calming and self-regulating.

Years ago, a friend of mine said that she changed her approach to her autistic children when she woke up one day and realized that she was treating other people’s (autistic?) children better than her own, and that this wasn’t right. This comment rang true to me immediately, but again I was not able to put it into practice in my own life. I filed the comment away in my head, only to pull it out now for the first time. When I ask myself why I would treat someone else’s autistic child better than my own (say, if were babysitting them), I find that the above four reasons I gave for correcting my children’s behavior do not really apply to other people’s autistic children.

Other people’s autistic children get to go home, at some point, if they are in my home. Other people’s autistic children are much more fascinating to me than irritating. That is because behaviors that might otherwise be repetitive or grating to my senses if present constantly are unable to be etched into me in such a short space of time: I don’t immediately go into self-preservation mode because it is a novel sound, pitch, tone, inflection, or pattern. I would never think to catastrophize about the future of somebody else’s autistic child. Somebody else’s autistic child would not embarrass me in public because I would not take the stares personally or feel I had to make up excuses or explanations for them.

And yet, I wonder if it is ever okay to treat (even theoretically) someone else’s autistic child better than one’s own. Is it ever okay to be more sympathetic, more compassionate, more level-headed, more true to one’s own core values toward someone else’s autistic child than toward one’s own? I think it is not okay. That is why I keep examining myself and asking myself why I can’t connect my own dots. Dr. Greene was able to identify a major problem: He saw time and time again, through interviewing families, that inflexible-explosive children tended to have inflexible-explosive parents, leading to a pattern of chronic meltdowns at home and at school and chronic dysfunction in the home. He was not able to take his theory any further, however, than noticing a pattern. He either could not or would not conclude that his neurologically different/disabled clients had neurologically different/disabled parents. Instead, he basically placed the “blame” on the parents for ineffectively managing the child’s explosive behavior, sidestepping the strong possibility that the parents themselves did not just have flaws in their “personality.” This is why the book is ultimately unsatisfying. It borders on the hypocritical, even, because these inflexible-explosive parents are merely grown-up inflexible-explosive children. On the one hand Dr. Greene freely admits that inflexible-explosive behavior is neurologically based, and on the other hand he believes that it can be eliminated through consistent flexibility, a true oxymoron.

I have spent many days feeling unsatisfied with my ability to take what I believe to be true about autism and what I believe to be a consistently moral approach to my autistic children, and actually put these into practice in real life on a daily basis. I am bombarded by my own brand of mental debris, not directed at others in this case, but at myself. I call myself a hypocrite, even though I know that this is not an entirely rational thought. I call myself a hypocrite sometimes, and I let other know that I feel that way, because I believe that no matter what I’m doing and thinking at this moment, I can do it and think it better. I punish myself relentlessly for not being able to consistently model the values and ideas about autism that I hold to be true and right. That is why I cringe and sometimes protest when people write things like, “You are the best mom,” and “Your kids are so lucky to have you.” It is not that I don’t appreciate the intent behind the words, and it’s not that I feel like I’m being flattered or that I’m embarrassed (well, maybe a little) by these kinds of compliments. It is that I feel they are not accurate. Accepting things or failing to correct statements that I know are not really true bothers me. Punishing myself and trying to get to the essence of what is really real and really true and really right seems to be the only thing I know how to do to myself, Aspie that I am.

So thanks, Trudy, for hurting my brain and forcing me to think about what I’m doing from moment to moment. You have taught me to remember the mantra I use often, “Reasons are not excuses,” and to make an extra effort to connect the dots between ideas and actions. I may not always succeed, but the difference for me now will be that I will no longer rationalize my behavior on the basis of my own disabilities and differences, or to think that the ends will justify my means toward my children. I cannot know what their ends will be, and no thoughtless or selfish action can ever be justified.

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