Autism Speaks is a high profile US charity. Their website describes their mission as “funding research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families”. So why do I have a problem with them? Allow me to explain…
Can you care too much? Is it bad to think about a friend for hours on end, to lie awake worrying about them?
With impeccable timing aspermama has nominated me for a Liebster Award just in time for this, my 200th post. This isn’t some award from a nameless, faceless panel sat in isolation somewhere, but recognition from a fellow blogger, and as such it really means a lot to me. I cherish the opinions of my peers who know what it is like either to be on the autism spectrum, or to raise an autistic child.
Besides, apart from all that serious stuff, I think it will be fun to join in! Continue reading
I love shiny things. I love the way the light reflects off of them, dancing specular highlights that sparkle and hold my attention. Which is why I was delighted yesterday to receive a new penny as my change.
This is the latest installment in what has become an active discussion on violence, its causes and effects, and ways to deal with it. It’s building into a very useful resource, and it’s not a subject that gets tackled very often because of its emotive nature. So great to see it handled so well here — this has turned into a real community effort (and I got a couple of quotes in this latest post).
The comments continue to pour in, both through email and on yesterday’s post and the post from the day before on the topic of violence and coping when overwhelmed and overloaded. A number of parents have emailed that a behavioral program helped tremendously and a few wrote about various medications they’ve (almost always) reluctantly given their child as a “last resort”. One parent wrote: “I had to go to the ER because he broke my nose and when the doc saw the bruises on my arms and my broken finger they called social services. I was told my child would be taken from me. Another doc prescribed _____ (anti-psychotic drug) and told me it was the only shot I had at keeping my son with me. Sometimes the choices we parents are given suck. I never went back to the ER even after he broke two ribs and my…
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I’m not a violent person in general. People who know me well have remarked on my placid nature. But I have a darker side: there’s a reason my mother told my wife to watch out for my temper…
I have a high level of tolerance for frustration or pain but when that state continues — whatever the cause — I become enraged. I shout, yell, scream; I throw things that are close at hand (although as an adult I nearly always have the presence of mind not to break stuff or throw it towards any person); I hit doors and walls.
As a child there were holes in my bedroom walls where I had punched or kicked through the plasterboard. I have punched and kicked through doors, or burst them from their hinges. In later life I have learned to punch solid brick walls where the only resulting damage is to my hands or elbows: this lessens my shame in the aftermath.
Because I do not want to act in this way. I know that my rages can frighten my wife. I have never aimed my rage at a person, although their actions might be the cause, and I believe that my inhibitions against harming a person or animal run too deep even for my rage to overwhelm. But even I can’t be absolutely certain. Because there have been accidents: a couple of times I have pushed somebody away from me after yelling at them to go away and they have fallen. I once hit my wife with the door I was pushing closed as I tried to keep her away from me; I didn’t even notice she was right behind me. Does this mean I could go on a rampage, attacking random people I encounter? I seriously doubt it: my drive is simply to release the anger and I have always aimed it at inanimate objects.
But I have caused people harm as a result of my involuntary violent outbursts. I am lucky that I caused them nothing worse than a bruise: I have to live with the consequences of what I do, whether my acts are conscious or not. As it is I always feel deeply ashamed once the anger subsides and I calm down. I feel guilt. I usually cry and shiver — it’s similar to the effects of shock. I will not — cannot — excuse my violence. But I can try to explain.
Why do I do it? That’s a very important question. I am usually able to communicate effectively but emotion is a minefield: I have alexithymia which means I have great difficulty identifying and describing my emotional states. Strong emotions, especially negative ones, are very stressful. Add to that the fact that I become practically non-verbal when under stress — words are in my mind but I can’t get them to come out of my mouth — and you have a recipe for disaster. I’m not able to communicate my state of mind or my immediate needs which adds to the sense of frustration.
I fall back on instinct which is to lash out, to exhibit violent behavior. It is a reaction, just as screaming is a reaction to acute pain — rather than calmly stating “My word, that hurt”. As a child it was described as “temper tantrums”: that was the best description my parents could come up with. When I am in that state, which is thankfully very rarely, I do not have any other viable means of expressing myself. Instead of reaching the crisis point I have learned to recognize the early signs that I am heading in the direction of a rage and take steps to remove myself from the cause. Often this is as simple as walking away for a while until I feel calm.
For this reason I can understand that when an autistic person — adult or child — expresses themselves through aggression or violence they are displaying a reaction to pain, frustration or some other stimulus that is beyond their ability to handle. This understanding comes from personal experience in my case but isn’t hard to grasp. How many non-autistic people would become aggressive if unable to otherwise communicate their distress? What if they had a severe toothache but their mouth was taped shut? Imagine them trying to seek help in the face of that handicap and in the grip of such pain. Don’t you think they might exhibit some aggression?
Understanding is key. You don’t pour oil on a raging fire: you cool things down. Remaining calm in the face of the rage is so important; anything else simply feeds the flames. And understanding is not difficult to learn. Yes, it takes patience and practice. But when you care about the person experiencing the rage surely your first desire is to help them, to do what is best for them?
Humans may consider themselves apart but are still animals with all that entails. Even a domesticated animal — your dog or cat, say — can react with violence when in pain. Why is it that some people can understand and accept this behavior from their pet as natural but not see the parallels in a child? I may not be able to excuse the violence in myself but nor can I excuse a failure to understand its causes in those close to me, or close to anybody else who suffers something similar.
I am lucky in that I am able to analyze and explain what happened once the violent episode has passed. For those who are not so lucky and are not able to do this I can hope those close to them might gain some insight from my own experiences. I can’t say that the violence is avoidable but there are ways of handling it calmly that reduce its severity. And analyzing its causes can help you develop strategies to avoid the triggers. Above all, please remember that the violence itself can be as traumatic to the one experiencing the rage as it is to one observing it: it is disturbing to feel that you are not in full control of your own body, and on top of that is the shame and guilt in the aftermath.
People often confuse me. Not intentionally, I’m sure. Just when I think I’m getting the hang of understanding NTs they come out with some seemingly simple comment where all the individual words make perfect sense but the meaning when combined into a sentence eludes me.
It usually involves metaphor or analogy, or else overgeneralization: something that is broadly accurate but where exceptions exist that I am unfortunately aware of. I say “unfortunately” because if I know that some statement is not true in all cases then I get hung up on that fact and go off on a mental tangent cataloging all the exceptions I can think of. Needless to say I then lose track of the conversation. I get an urge to correct the speaker, “helpfully” pointing out to them that what they have said is not strictly true, and offering examples to demonstrate this to them. In most instances I manage to suppress this urge these days – it isn’t usually well-received (to put it mildly!).
I’ve mentioned before how my literal interpretation can interfere with understanding even familiar figures of speech, but when they are unfamiliar it can be a serious impediment: I can get such a strong literal image of the phrase that it precludes consideration of alternative interpretations. I’ve become quite used to the expression of disbelief when I ask them what they mean – they might respond that it’s obvious. Not to me it isn’t. That’s why I asked.
All this assumes that I’m paying attention to whatever conversation is going on – I’ve got a habit of drifting off into my own thoughts if I lose interest in the subject at hand. I gaze into space and become very still, lost in thought until somebody deliberately attracts my attention, usually because they have just asked me something and I’ve not responded.So I have to ask them to repeat what they just said, and explain what they’ve been talking about for the last five minutes. A lot of the time they don’t bother and resume whatever topic was under discussion while I tune out again.
One thing I notice again and again about NT conversations is the amount of detail that is either omitted or assumed as common knowledge. They might be talking about something that was reported on the news, or some recent event, and I find it incredible how far they can take a line of reasoning without any solid foundation of fact, or even stating their underlying assumptions for the benefit of the other participants. I wonder if that’s because they don’t consciously analyze their subjective views, their unconscious prejudices. Indeed they appear resistant to any attempt to expound or elucidate these unspoken assumptions: I know that I rapidly lose the ears of my listeners when I attempt to build up an argument from basic principles. But unless I articulate the foundations on which I am basing my opinions, how can they understand my position? Perhaps they just don’t have the patience to appreciate a pedantic, pedagogical approach and dismiss it as grandiloquence.