Why it’s hard to write directly about my life.

Standard

The truth about my life is, to me, straightforward. But it is also, as it is for most autistic people, unusual. It has a couple of points in which I’ve traversed some developmental trajectories that are unusual even for autistic people — although not as unusual as I’d expected. But I am still afraid whenever I tell anything but a few parts of the truth about my life.

I have spent a good deal of my life institutionalized in one form or another. First I was institutionalized in the ordinary way most American children are institutionalized, which is to say I went to school. School is a surprisingly good training ground for the next kind of institution I wound up in, the kind with locks on the doors, Thorazine, restraints, and seclusion rooms. After that, I was institutionalized in ways that, while the power dynamics were exactly the same, took place without locks on the doors. These last places not only presented the false front of not being “true” institutions (when in fact they were), but left me permanently uncertain about when, if ever, I was let out of institutions for good.

I have spent a good deal of my life, within all of these settings, being told who and what I am. I have spent a good deal of my life under the direct control of people who told me who and what I am. These people have had absolute power over me up to and including whether I live or die. They have told me that I am not thinking what I am thinking, feeling what I am feeling, or experiencing what I am experiencing. They have looked at my outsides and filled in the gaps with their own prejudices, then tried to force me to conform to their prejudices. They have trained me to second-guess every thought in my head, to say that true is false and false is true.

Whenever I speak about the day-to-day reality of my present life, or certain aspects of my past, ghosts come out to haunt me. They feel real. Sometimes, with the help of flashbacks, they even look or sound real. Sometimes they superimpose themselves over real people, people I know today who believe in me.

I see the classmates who bullied me, especially the girls who did things to me and then later told me (and of course teachers) that they’d never happened. Relatives and ‘friends’ who abused me, or who didn’t know me that well and made their own assumptions. Mainstream and special-ed teachers and principals with their agendas for me and their narrow and conflicting views of my abilities and impairments. Counselors, psychologists, and psychiatrists with their views of what my mind was “really” like and what I should do about it. Psychiatric nurses and psychiatric technicians who wielded control over my life direct and total enough to corrupt nearly anyone, and with the insulting and inaccurate motivations by which they were trained to interpret my behavior. Doctors who told me that my internal experiences (including non-verbal thought), by virtue of not meeting their expectations, were completely invalid and impossible. Autism “experts” with their own ideas of which parts of autism I should be concerned about (social skills) and which were just me being lazy or willful (everything else). Random people who told me that communication is impossible for an autistic person.

Without fail, these are the people who appear in my head every time I write an article for public viewing. The closer I get to the real truth about my life1, or to living my life the way that best suits me, the stronger these voices out of my past call me a liar. I have nightmares about them. They tell me I’m too crazy or dramatic to understand myself. They say that documented events never happened. They threaten me, telling me to shut up right now or else.

This mirrors exactly the times when they, in their real-life people forms, asked me what I was thinking, I told them the truth, and they told me it was a lie, or that I lacked insight. Then they told me to say something that I knew was a lie but call it the truth. They told me they knew me better than I did. They had a lot of power over me then. They don’t now. But I am well-adapted for a time when they had power over me. If I weren’t, I wouldn’t be alive to describe it. My fears mirror the strategies I learned for survival — telling the truth is dangerous.

Perhaps because of this exact phenomenon, my heart rate is skyrocketing just writing this down. But someone has to document this. This is the kind of damage that is done to people all the time, the kind that messes with our minds rather than our bodies. It is the hardest kind to write about, and thus is often not written about in detail. It is intensely personal and by its nature evokes an extreme sense of vulnerability.

There are other people out there who have experienced this kind of total domination. There are autistic people who cannot write the whole, non-stereotypical truth about our lives because terrible things will happen when we do2, or because terrible things happened when we did in the past. There are institution survivors who can write about being beaten up by staff but who freeze up completely when we attempt to write about the domination and invasion of our minds. It is so much easier for many of us, in comparison, to stick to the stereotypes. Or the more spectacular but often less invasive physical torture we’ve endured. Every one of us who breaks this pattern is taking a tremendous risk, either in our minds or in present reality.

It is important to know that when you read something by someone who’s a member of a group that’s been dominated and oppressed as heavily as this, you may be missing the whole story. Particularly if you’re one of the people with power over us. This is not out of deceitful natures on our part, but out of terror of what will happen when we reveal certain things. It is important to know that some of those of us who appear to approve of horrible things that were done to us, are people who are afraid — sometimes legitimately afraid for our lives — to say otherwise. Or worse, many have forgotten how to say otherwise, or have only been taught to communicate in ways that validate those who have harmed us. How many communication “interventions” for autistic people teach us to say “No” or “You’re wrong”?

It is important to know that uncounted people are suffering in silence while dominated by people (regardless of intentions) who have belittled us and called our every truthful word a lie. They may look calm, compliant, cooperative, and happy, but under the surface be terrified or secretly defiant. I remember all too well a day when my life was threatened. The Orwellian language of my psychiatric records describes it as a day when my compliance level started improving. For my part, this was the point at which I gave up all hope and cooperated out of fear and despair.

It has taken years to get up the courage to write this. I have tried several times and ended up curled up in a ball on my bed crying or banging my head on the wall, surrounded by the ghosts of psychiatric nurses. Often after only writing the first sentence. I don’t know what has made me able to write about it tonight, but I’m taking full advantage of it. I want people like me to have words and concepts for what has happened to us. I want other people, particularly professionals, to understand the damage they have inflicted and may still be inflicting on us. I want to be another person to break the silence around the things that are harder to describe and harder to endure. I want to defy the people I fear the most.

Writing this is part of my commitment to the truth, and my efforts to conquer the hold of these attitudes — not only on me, but on all the other people who are trapped within the mental prisons others have created for them. Now that I am free of these people’sdirect control over my life, I feel an obligation to speak up for people like I was who are still under that level of control, and for the truth that other people have forced them to bury.

Our lives or circumstances may be (or seem) unusual, but that does not give anyone the right to force us to lie and pretend that we are someone else. It does not give them the right to redefine the truth about us to reinforce their power over us or their stereotypes of what our diagnoses dictate we should be. It does not give anyone the right to inflict the kind of mental torture that leaves a lot of us begging for something as straightforward as a simple uncomplicated beating.3


Copyright © A M Baggs, 2003

1 Particularly the truth that says “This happened” when people want me to think it didn’t; or the truth that says “I can’t do this” or “I can do this” when people have thought otherwise in the past or when it’s an ability that has changed or fluctuated over time. These are all things that other people have strong investments in not being true, for some reason, and they have therefore tried to create in me an investment in not telling the truth about them. This also extends to asking for certain kinds of assistance or refusing other kinds of assistance.

2 As long as services, formal or informal, depend on meeting a very narrow, stereotypical set of traits to a degree that no person truly meets, many will continue to have to hide the traits in themselves that are not stereotypical, in order to survive. This creates a self-perpetuating cycle in which service providers require stereotypes, people hide non-stereotypical attributes (which every last one has), and stereotypes are perpetuated. Autistic people who can talk or type independently, and/or who were diagnosed after the age of three, and/or who scored over 70 on an IQ test at some point in their lives, are at high risk for being excluded already regardless of need, because those are non-stereotypical attributes in themselves.

3 This is not intended to be an endorsement of physical violence. Physical abuse is horrific and needs to be stopped just as much as what I’m talking about does. But many of us find it as taken on its own, as long as it doesn’t kill us, easier to recover from than the more mental forms of torture and coercion and the resulting thinking patterns.

Old comments from when this was a page not a post:

  1. santosh pandey says:

    December 12, 2006 at 6:37 am

    we should be optimistic in our own thought regardless of what

    other says.if we dont’t have the will power to consume our effort

    on our truth thought we will be missing.

    u will be always admired

  2. tektrix says:

    January 27, 2007 at 7:32 am

    As with any strict doctrine of thought and/or practice, there are many things that traditional psychology and psychiatry cannot explain. Often times these flaws, in a particular practice, go unseen by the ‘experts’ and the novices are taught to discredit any knowledge that conflicts with the strict teachings…and thus potential knowledge gets lost in someone else’s personal truth. In other words, people are extremely close-minded, generally speaking, when they let one belief system or doctrine govern their powers of thought, reason, conclusion, and logic. The experts, with their myth of objectivity, often tell others that their view is incorrect for a reason that basically amounts to the teachings of some college, book, or other traditional education.

    Time and time again, it seems as though the ‘experts’ are the ones that are too educated, in the traditional sense, for their own good. Why is it that even the best of theories, belief systems, or doctrines can really only explain about 90% of the great mysteries? Certainly I have my theories on why, but I have no way of being 100% sure. To this day, I still cannot find a straight-ticket way of thinking that explains all that I, and others, experience. Sometimes I cannot explain some of the things that I experience. Even in moments of absolute certainty, I later reflect and find a reason to doubt my previous conclusion. It’s not to say that I am doubtful of myself, but I do try and develop personal truths that seem very accurate to me…and I hope to find more accuracy after gaining more knowledge and reconsidering such views. I’m not so sure that there are any absolutes in this world, universe, life, or otherwise…although saying that there are none at all would be an absolute view in itself.

    I could go on and on about the thought that run throughout my mind throughout every hour of every day, but I’ll instead move into how this might relate to you and I. We live in two seemingly different worlds, at least that is what the experts would tell us. I, being what they would consider ‘normal’, cannot fathom in a truly accurate way what it would be like to be autistic. That is the difference between the experts and me: I don’t try and act like I know everything. Judging from your writing, you are very smart…at least in my view. Traditional I.Q. and intelligence tests might say otherwise, but it is my personal view that each person has their own (sort of) reality and thus each person has their own unique thoughts and thought processes. That is why psychology and psychiatry ultimately fail at explaining a lot of things — the strict rules comprised from past experiences and cases cause the experts in these fields to try and apply what was the case with one person unto someone else. I think that the only difference between a psychiatrist and its patient is that one can help the patient, but the psychiatrist is beyond help. In other words, they are the ones that are so caught up in some pathological world that they cannot possibly fathom a different form of thinking other than their own. These people, in my opinion, are dangerous because they will try to strip people of their individuality through extreme force and next thing we know the patient is worse off than they were before being ‘treated’. It seems as though modern medicine, mental health clinics, and public schools are designed to strip people of their outward expression, their creativity, and their individuality. Judging from your story above, I don’t need to tell you that.

    I guess the whole point of this is to say that there are ‘normal’ people who think very different in their own light…but they do so in an introspective manner (typically). It is socialization, from what I can tell, that teaches people to not express themselves in full…and I find myself disagreeing with the practice more and more.

    People see you as a physical body with a disability and label you with their ‘suiting’ title of “autistic.” It is almost a form of objectifying a person and letting everyone know that that the person is not ‘in’ with the ‘real world’ which some call society. It is my personal view that seemingly abstract and unique ways of thinking are actually forms of progress for the mind. If one hallucinates then they are labeled as crazy…but if one had, or learned, control over such hallucinations then it could be a very useful tool.

    I may not know you personally and I may never know you personally, but I do believe that you have a very great potential within you that many others cannot see…for they rely too much on what their conventional sense and experiences tell them. Perception is how most people gain knowledge, and it is a very subjective experience. It is my personal view that objectivity is a myth. In other words, there are only personal truths rather than absolute truths…at least that is what I have seen so far in my 18 years.

    You might disagree with a lot, or all, of what I have said in my long comment (and I do apologize for its length) but I figure that I should at least offer you a long reading about my thoughts since you offered me, and everyone, one about your thoughts.

    Many thanks.

  3. mamallmighty says:

    February 2, 2007 at 9:47 am

    Please try to think you are perfect the way you are and unique in your own way too. It is so sad to find out that the nursing and medical personnel really don’t know everything about the human body and the working of the brain. Check out the website of Barbara Brennan who has a school that teaches about the energy field of the human body beyond the teaching of the medical schools or check for the word Reiki and Chakras on the net and you will find a new way to live!!! Good luck and be happy with yourself.

    Veronika

    y2khealing at yahoo dot com

  4. be_led_by_reason says:

    February 23, 2007 at 12:45 am

    I work with autistic children, and am so afraid that I may be doing some unintentional emotional damage to them. I hate the structured way we are told by specialist to teach them. I don’t know if they are right. All I know is that I would go crazy if I had to go to school everyday learning and listening to what we make the our kids learn and listen to.

    I try my best sometimes to the dislike of my fellow educators to not stick to the the way “Behavior Specialist” feel people with autism should be treated when they act out. Or to tell you what “I feel” a particular action may mean. This is especially difficult when a student acts out in a aggressive manner. It can be very hard, and frustrating at times. This is only because I care so deeply for my students. I don’t want to tell them how to feel or what to feel. Yet I can only guess and hope I am getting it right. I often tell them that “I am not sure what you are feeling. You are angry is my best guess. I’ll give you a moment. If I am wrong please forgive me.” I walk away and leave them to their thoughts. I hate it when others tell us to respond with “your body is telling me you are angry, and that you need to calm down. Go sit in the consequence corner.” Am I wrong? Are they wrong? I don’t know…….

    I do care so much though. This post has helped me understand a little more of what a child may be feeling.

    Thank you!

  5. sdg says:

    February 24, 2007 at 9:23 am

    What a great video and great information on your web… Keep it up… I have nephews that are autistic and I found this very iformational.. Thanks for the insight into Autism

  6. Peter Hoeffel says:

    March 23, 2007 at 6:55 pm

    Amanda,

    I was forwarded a link to your video “In My Language” and I have’t been so moved in a long time. I am an advocate for people with disabilities and have a disability myself. I work for Disability Rights Wisconsin and was wondering if there is anyway I could get a DVD or VHS tape of “In My Language” to use in our trainings. I would pay for it of course. Please let me know.

    Thank you and keep on keepin on!

    Peter

  7. Sarah says:

    June 21, 2007 at 4:59 am

    Hi Amanda,

    I just found your website because they showed your video at a SCIP-r training I took this week. I am an employee at Autistic Services International. I was wondering what kind of advice you have for those of us trying to assist the autistic individuals in our communities.

    Our training was completely focused on using the “Least Restrictive” techniques. And avoiding intervention at all cost. Everything that we learned in our training went in line with everything I have read on your website.

    I thought you should know that there are organizations and people out there who are truly focused on “Independence, Individuality, Inclusion, and Productivity”. Which is what every human being deserves.

    I will be working in a residence with 4 “high functioning” Autistic Males in their early twenties. Any insight would be fantastic as I am excited to meet these new people in my life.


  8. June 21, 2007 at 11:57 am

    Sarah:

    I don’t know if Amanda intends to respond to you directly. But in the meantime, you might want to start by following some of the links shared by Ballastexistenz readers at http://ballastexistenz.autistics.org/?p=317#comments — it’s a long comment thread and people left a lot of link ideas (some right here at Ballastexistenz, some elsewhere).

    A good one to consider is:

    http://ballastexistenz.autistics.org/?p=19

    A long post that discusses “do-gooderism” with many links to further essays and discussion — put aside an hour or two to pursue all the working links (a few are now broken, but most still work). Key for any person considering entering any so-called “helping profession” or who already works in one, whether or not you necessarily work with autistic people.

    But also check out links provided in the comments thread I point you to above.


  9. August 26, 2007 at 6:21 pm

    As a developmental therapist/early intervention educator who works extensively with spectrum differences, I deeply honor and respect what you have to say. It takes tremendous courage and beauty of the pen beyond decription. I have only this to add. Until us so-called “neurotypicals” learn the art of humaness and compassion and in the process become more empathically receptive, meeting, understanding and exchanging different ways of seeing/being/feeling the world and in that process lay down the gauntlet of stereotypical demands for wholesale compliance under the embarassing and simplistic banner, for example, of “school readiness” we will continue to perpetuate horrors in the name of “objectivity.” In that deplorable displayed lack of “theory of mind” (empathy – or properly functioning mirror neurons) we will continue to enslave others not only on the BROAD BAND of NEUROTYPICAL differences but ourselves of which we are but an ephemeral glimmer. Neil Samuels

  10. meera says:

    August 27, 2007 at 9:57 pm

    I feel incredibly moved by your courage and the truth in your article. Although I have no direct link to a person living with autism, I feel a kind of kinship, as a trauma survivor; I do not understand the changes in perception and the neurological overload that I seem to experience on a daily basis–and have no real vocabulary to speak about it. No one seems to understand what I am experiencing. I feel drawn to reading and learning more about people with autism, because I feel like I can relate to something about or I can learn something about what is happening for me. I can empathize with the difficulty of living with perceptual difference in a world that is so intolerant of difference and so lacking in understanding. If you know of any resources you can recommend to me I am trying to learn more about differences in interpreting neurological stimuli.

  11. Jennifer says:

    November 20, 2007 at 10:04 pm

    Amanda,

    I think you’re amazing and courageous. Thank you for some insight into what having autism means for you. I am a speech language pathologist and all I know is that every person with autism is different just like every person without it. I hope your days of being threatened are over. If I can ever help, don’t hesitate to ask.


  12. November 21, 2007 at 12:43 am

    Threats happen. And so do people who insist that they know what I am or was thinking or experiencing better than I do. But I’ve actually gotten used to both of those things. The people doing them have unwittingly done me a favor by desensitizing me to this kind of cruelty. Sort of like what Donna Williams said at one point, that I quoted in this post:

    I used to be intense about precision. The media knocked that out of me. The way I am talked of, advertised, packaged, pulled apart, even heralded and praised, has taught me to give in about my insistence others must be precise in their representations of me. All I need to know is that I know me… and maybe those most personal and closest to me. But I had to learn to let them see me through their eyes, their feelings, their structures too. Anyway, the more strangers describe me through their own baggage or are way off mark from who I am or how I work, the more they have helped me to dearly value those close to me… and that was something I was very aloof about before. So I thank those who ever portrayed me wrong. You helped me immensely. What can make us crumble, can often also make us more whole… its a matter of focus- self as a victim of crappy experiences versus crappy experiences as an indicator of what’s needed or how great other stuff is by contrast.

    Gossip isn’t you and it isn’t yours unless you created it directly by your own hand. If it’s not yours, you can’t control it and time is worth everything. Change what you can but also learn that giving up isn’t giving in. Learn to say ’so what’, ’so bloody what’… then get on with it.

  13. Me says:

    November 27, 2007 at 7:46 am

    In response to be_led_by_reason ‘s comment…

    I too deal with diffucult situations like you described… I don’t work at a school but I know someone witth autism pretty well – I help their mom take care of them while shes at work and when their angry I don’t know what to do….. they get very violent towards me(other people) and they break things …. I have had bruises up and down my arms from this and when people ask where i got them…… I don’t know too many other autistic kids like this and I dont know what is going to happen if this conttinues into adulthood for this young one… they are so sweet 99% of the time but that 1% the angry, mad, frustrated part is just plain awful. I wish I had the answers to how to make this particular behavior stop completely……how can an autistic person learn to channell their anger in a different manner cause this is about the only thing that I don’t think is acceptable…….for anyone to do…..

  14. Andrea says:

    November 27, 2007 at 10:46 pm

    To “Me”: Obviously I don’t know the child you work with so it’s hard for me to conjecture. And I also should hasten to clarify that I’m no expert in autism, nor am I autistic. But just based on my readings: how certain are you that this is anger you’re seeing versus something else that could be misinterpreted as anger? For example, “melt downs” can often be mistaken for anger but have nothing to do with it. What looks like an angry tantrum could sometimes be an instinctive or involuntary reaction to being totally overwhelmed with just too much stimulation to deal with. (Remember that some autistic people are hyperacustic, for example, which means they hear more sharply and clearly than other people–so a noise that you barely even notice can be very aggravating for them. Ditto, for some autistic people, with visual stimulation including light and tactile sensations.)

    You may want to click on “meltdowns” under “categories” to explore some of what Amanda has said on that topic. Also try exploring other blogs by autistic bloggers to see what they say on the same topic.

    Of course, autistic children do sometimes tantrum just like any other child. But it can be important to try to distinguish which it is. Because if its actually overstimulation, then strategies such as a quiet room with dimmer light, clothes with no itchy tags, etc might help.

  15. Heather says:

    February 23, 2008 at 8:19 pm

    I just wanted to say that I think you are a truly amazing, special person. I am going to college to try and become a special needs teacher. I want to change the way things are for special needs children. I don’t think there is anything that any person, can’t do. You are only just at the begining of proving how wrong the worldis with it’s “gray area” & stereotypical viewpoint of what special needs people can or can’t do. Thanks for being you! If you have any advice at all for me I would be grateful.

  16. Sean Bezdicek says:

    March 1, 2008 at 4:52 pm

    Amanda, I don’t want to sound trite, but your existence has inspired me. My son Salvador, who just turned 3, has been diagnosed ASD. He does not speak yet. After much research into the autistic condition, I have concluded that NT could also be considered a spectrum disorder; not much orderly about us. I have read various websites with your commentary indicating how you cannot possibly have insight into every autistic person’s mind, but I still have to inquire out of the love for my son.

    I never want to be imposing or domineering on my young son, and now I cannot help but think that too much speech, OT and PT can be imposing despite our best intentions. The truth is that we are not connecting with our son completely, and we want to have a consistent two-way communication in order to know we are doing right by him. I just want him to enjoy himself. I accept he is on his own path, and I don’t want to inhibit his growth.

    He shows great affection for us, so that is a sign he feels loved and doesn’t have any dissent toward us.

    Do you recall your early years and how you first established intentional communication with other humans? As you have stated that you are consistently interacting with your environment, and I am sure there are many subtleties that we must learn from our son, but what would be a strong indicator that his actions are intentional communication and not just a reaction to the stimuli in the environment? Also, how did you learn to read? Was it in a traditional setting?

    I know I have asked a lot, so any response would be greatly appreciated.


  17. March 1, 2008 at 6:32 pm

    I learned to read by being hyperlexic, which basically (in my case) means that I learned to decode words early in life but had trouble with receptive language, both written and oral.

    I learned how intentional communication worked by going through the motions of language. At first, I didn’t even understand a lot of the sentences I had learned to repeat. As I got older, more and more comprehension and actual communication crept in to both speech and writing, although it was never 100% or even close to it. My experience was a lot like a couple of the other people who read this blog, the ones who talk about speech being seen as a puzzle.

    I gradually got to close to 100% communication in my expressive language (although I’m not sure I’ll ever get all the way there with receptive, at least not in any immediate sense), and I actually think that the losses I began to experience in speech again after awhile (with, for instance, cutting out rarely when I was 12, often enough to be in accommodations letters by age 15, and pretty much constantly by some point in my early twenties) were possibly my brain making more room for the sort of comprehension that is necessary for fuller communication. When I spoke, I found it very hard to understand just about anything, because speech took up so many resources and was so painful and taxing on both physical and cognitive levels. Speech obscured my thoughts and personality more than it revealed them.

    Basically, a whole lot of things I went through the motions of for ages before anything sank in, which could be quite confusing to people on the outside watching.

    These experiences are mine, though, and I’d recommend reading Please don’t take me as typical as well as a lot of other stuff here. You’ll get a lot more details on the particulars by reading through my blog.

    And I might be very much unlike your son. I feel very uncomfortable when giving advice about people I’ve never met, because while some things are probably common to all autistic people, our expression of those things is so varied that we can even appear opposite in many areas (like me and my brother, both autistic, almost polar opposite in some areas).

    Also, if you want, I can point you at books and other writing by autistic people. If you tell me a topic you’re interested in reading about, I’ll see about recommending books, and I’m sure other people here would be happy to as well. This is because describing autism, while it happens on my site, isn’t always the main focus, but many autistic people have dedicated entire books and websites to that topic. I know most of the books because I’ve been collecting them in an attempt to catalog them (although I’ve been missing out on most of the recent ones). And if you give a topic, I can probably find some autistic person who’s discussed it in depth. And of course you can read through my blog, because I write about a lot of these things in more depth, and many of my readers are autistic or otherwise neurologically unusual and we all go back and forth about our experiences on here a lot.

    One big difference can be, for instance, a lot of autistic people are almost the opposite of how I developed, with trouble with both expressive and receptive language, but in their case there’s more trouble with expressive than receptive. I’ve got more with receptive than expressive, which is common in hyperlexic autistic people, but not all of us are hyperlexic. Another difference is what Donna Williams describes as the difference between “taming dysfunctional language” and just having language develop more slowly. I had the “dysfunctional language” problem more than just the slowness problem when it came to expressive language, and even in writing there’s some serious language-wrestling to do because of that at times. But many autistic people develop language in a typical order, just slower than usual.

  18. Susie says:

    March 2, 2008 at 4:48 am

    Working with Severely Handicapped students at the state school has been an enormous adventure for me. I have developed rapport with many just because I have approached their spirit rather than their mind or body. Amanda, you have a lovely, brave spirit. Thank you for speaking out.

  19. Jennifer says:

    March 5, 2008 at 8:05 am

    I’ve just stumbled across you and I was so blindsided by your video about your language I was compelled to come here and comment on your blog. I have a child, a daughter, two years old and “normal.” She displays no indications of any cognitive or developmental disability (i.e., I am not writing you for advice). I was bowled over by what you are communicating because life as a small child is quite the same as being under the types of control that you describe. Her feelings are just as valid as mine, and yet sometimes I treat her as though she were a doll – denying her, telling her No, just picking her up and putting her elsewhere if she is somewhere I don’t want her to be, making her put her toys in a certain area of the house and not allowing her into other areas of the house.

    Granted, it is my job as her mother to keep her safe until such time as she learns how to keep herself safe. But why are we, as parents, so conditioned to say No, to arbitrarily impose limits, to not allow what we don’t “feel like” allowing, out of some feeling of inconvenience to us?

    Your video reminded me (I say reminded because this is something I’ve been working on already, to respect my daughter’s autonomy and her desire to put nonfood items in her mouth to taste them, to roll in puddles to feel the texture of mud, to bang things against metal to get the satisfaction of a clanging sound, or a vibration, or to do whatever else she wants to do in order to get a whole-person sense of her world) . . . your video reminded me to step back, to allow my daughter to learn and to interact with the world how she wants to, not by some arbitrary set of rules I follow because I was raised by people who followed them because their parents raised them to follow them.

    What we do as “traditional” parents raising “traditional” children is to squelch every ounce of discovery and creativity out of them in favor of the dubious goal of interacting with society in a “normal” and “acceptable” way. Why can’t our children taste a pen? Why can’t they rub their face in a book until they really, really know what a book feels like on their face?

    So I suppose I’m really just writing to say you inspired me to redouble my efforts to be a parent who makes it possible for her daughter to meaningfully interact with the world, in every way possible.

  20. Philip says:

    March 5, 2008 at 10:24 am

    I had not come across the terms ‘expressive language’ and ‘receptive language’ until I read them on this blog, and in other writings by autistic people. I didn’t see those terms when I studied for a degree in linguistics in the early 1990s.

    Having looked in the indexes of several books on language and linguistics, the only definitions of expressive and receptive language I found are: 1) Expressive language as any use of language which shows or affect’s a person’s emotions. It is also called emotive language. 2) The expressive power of language: its ability to convey meaning. 3) As describing a specific language impairment (SLI). Aphasia is commonly classified into expressive and receptive types. Expressive aphasia is also called Broca’s Aphasia. An Encyclopedia Dictionary of Language and Linguistics defines it as “characterized by effortful speech, with problems of word finding and disruption to the grammatical system.” A feature of Landau-Kleffner syndrome is impairment in expressive and receptive language. But otherwise than used in 1) and 2) above, I have not seen the terms expressive language and receptive language used outside SLI.

    Besides the communicative and comprehension functions of language, there are its artistic and aesthetic aspects. Such as the beat and rhythm of poetry; listening to words, not for understanding, but for the beauty of their sound whether spoken, chanted or sung; the shape of letters in different alphabets; artistic arrangement of words on a page; calligraphy.

    My receptive language is better than my expressive language.

  21. Stefan says:

    March 7, 2008 at 3:01 am

    Philip: It’s not surprising that there isn’t much information about the distinction between expressive and receptive language other than in a context of impairment, because people “normally” learn both together. Most people would have trouble even imagining having one without the other.

  22. Mom says:

    March 7, 2008 at 5:10 pm

    Young children before they speak have a very large receptive language and their expressive spoken language starts growing as they mature…Dogs and most other pets of course do not have the physical ability to speak our language but can have very large receptive languages..Both very young children and pets without the ability to speak are still able to communicate with body language…We just have to be willing to listen and learn what they mean.

    I enjoyed reading Phillip’s reference to the artistic and asthetic aspects of language..We have

    a family member and a new friend who have a way of

    pulling archaic words off dusty shelves and flinging them headlong into everyday conversation..It is such a treat to hear these words once again. Some people too have such melodious voices I don’t think it would matter too much what they read…It would be a delight to listen…Tolkien’s readings affect me like this..


  23. March 7, 2008 at 6:51 pm

    Yes, when I use the terms expressive and receptive language, I mean something like this:

    Expressive language: Language used in speech, writing, sign, etc. (The language we use, rather than the language we take in.)

    Receptive language: Language comprehension of speech or writing.

    As far as sheer quantity and type of words go, I have always (when able to speak/type at all) been able to use far more of them than I could comprehend, and I can remember in fact using words without knowing that words had meaning at all, let alone what the words were.

    As far as the ability to take my thoughts and form words by them, I have had more trouble with that. That’s always been hit-or-miss at best and non-existent at worst, and it’s changed a lot over time. Adulthood is the only time it’s really solidified into mostly being things I meant, other times have been various percentages in different directions.

  24. Philip says:

    March 8, 2008 at 12:25 pm

    In The Lord of the Rings there are poems, songs and other passages in Quenya and Sindarin and other languages of Middle-Earth. They can be enjoyed without knowing their meaning. But, of course, the works from which Tolkien took LOTR were written in Westron, or the common language of Middle-Earth, which was remarkably similar to English.

    Musical notation is a form of language. Expressive language in music is the ability to play a musical instrument or to sing. Receptive language is the ability to read music. There have been musicians, such as Jimi Hendrix, who couldn’t read music. I can read Western musical notation but can’t play a musical instrument. Between the ages of 12 and 14 I had piano lessons and could play a few simple piano compositions. My mother was a talented piano player.

  25. Ettina says:

    March 8, 2008 at 6:59 pm

    Westron wasn’t actually similar to English, he just translated it. To preserve the similarity, he translated Rohirrim (very related to Westron) into Old English.

  26. Philip says:

    March 9, 2008 at 5:13 pm

    Of course Westron could not have been any type of English, because the events recorded in LOTR took place thousands of years before Old English existed.

  27. bev honold says:

    March 20, 2008 at 9:01 am

    Hi,

    discovered you on the website “the Last psychiatrist”describing the unexpressible as you do is an encouragement for me to keep journalling and to stay in the battle.My diagnosis-paranoid schizophrenia.I discovered you,hows that for luck!

    best,

    bev

  28. Jean-Luc says:

    May 18, 2008 at 4:48 am

    Hi-

    I’m sure that you must have people commenting like this all the time, but I just wanted to let you know how amazing I think your writing and videos are. I got really interested in so-called ‘radical disability theory’ sort of recently (through trans feminisms, writings on intersex, gender, bodies and embodiment etc.- (I’m just graduating college, my senior project was about transgender and transsexual embodiments). Your work is some of the most compelling and inspiring stuff I’ve encountered, and it definitely makes me want to devote a lot more of my time to thinking about ability (whether ‘academically’ or otherwise..). Anyway, Thanks- looking forward to reading more of your entries.

    -Jean-Luc

    ps. I totally bought a copy of A Wrinkle and Time the other day to reread- It was great to see that you quoted from that.


  29. June 24, 2008 at 11:09 pm

    […] offers another description that’s eerily close to what I’ve experienced in her “Why It’s So Hard to Write Directly About My Life”. Her writings have made me feel less crazy overall, seeing someone else who’s gone through […]


  30. July 10, 2008 at 8:36 pm

    A brave and inspiring piece, radical and eloquent. Thank you.

    Bright blessings

  31. Steph says:

    October 14, 2008 at 12:23 pm

    Thank you so much. Your writing and courage is more beautiful and hope-inspiring than anything I’ve ever read. I hope I can help get your message out there too if I get into health/social research. The truth will set us free.

  32. Dunno says:

    October 26, 2008 at 2:38 am

    Thank you :) You made me cry and i wish i could, more often, get from me the very same courage it took you to write this

    Love

  33. Tina says:

    November 24, 2008 at 5:36 am

    Thank you so much for sharing and for being brave. I am very glad you wrote it. Though I have never been institutionalized nor am I autistic, I did have an abusive home so I can empathize with many of the things you wrote, even though my situation was so different from yours. Thank you for writting all that you wrote. May you be blessed with all good things.

  34. Moghs says:

    March 27, 2009 at 12:23 am

    I need to thank you for writing this. I thought I was the only one with the voices that said, “this didn’t happen to you, because things like that don’t happen” — Even when, obviously, those things had happened, and I had witnesses to them. I don’t have any bold and encouraging statements for you, but thanks for reaching out and letting me know it’s not just me.

  35. Shii says:

    April 25, 2009 at 7:35 pm

    This post is stunning. It made me cry. Thank you so much for sharing the undeserved pain of your life with the world. I think people will understand autism a lot better as voices like yours become public.

  36. ross says:

    November 5, 2009 at 4:33 pm

    I want to thank you so much for writing this. I am too austistic and have struggled with this most of my life. Trying to process information, not being able to move my eyes or make appropriate eye contact at the right time. Feeling things at times people can’t explain. Sensory being so off I feel like I’m in pieces. I get scared to look at people because I fee they will see me staring at them and I can’t tell what facial expressions I’m showing to the outside world without looking in a mirror and memorizing that situation with the way I looked then. It’s like living your life in a dream

  37. ross says:

    November 5, 2009 at 5:03 am

    To continue where I left off. I can totally relate to you on how frustrating it is to be this high functioning with Autism and you are not alone. Were just alone in our own worlds and other people can’t really see it. So many people can tell you look so normal and that you understand it like everyone else but you don’t. You see it from a whole different perspective and feel things differently. It’s not that your seeing things or crazy its the angle in which you see it from a whole different end and like being a sleep when your a wake because of reprocessing old information as your trying to move on. You know when your asleep because you don’t worry when your dreaming and when your awake you worry about every little thing and feeling and what it means. I don’t know if you tried different therapies like supplementation,exercise or some other speech therapies. I know that the supplements that I am on are helping to declutter some of the past information and to process things more clearly but what is so frustrating is that its hard for people from the outside to notice much changes and I sometimes look like I’m getting worse but I know I’m getting better when I can focus on less things and relax with it. I really feel this is what people with severe autism who cant speak are going through and can’t communicate about it.

  38. ross says:

    November 5, 2009 at 5:07 am

    You just have to keep on fighting on not give up.


  39. April 6, 2010 at 12:47 am

    […] In both cases, they are telling you what you should feel, and insisting that you put on a performance to their specifications, on demand. They feel entitled to decide what your reality is, and substitute their own version. They have no right to do that, even when it’s ostensibly for your | own good. […]


  40. December 11, 2010 at 7:32 pm

    […] http://ballastexistenz.autistics.org/?page_id=258 4 Responses to “What a non-verbal yet very “verbose” autistic person may say–” […]

About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Physically and cognitively disabled. Anything you hear in the media or gossip is likely to be oversimplified at best and wildly inaccurate at worst, the only way to get to know me is to actually know me. I'm not really part of any online faction or another, even ones that claim me as a member. The thing in the world most important to me is having love and compassion for other people, although I don't always measure up to my own standards there by a longshot. And individual specific actions and situations and contexts matter a lot more to me than broadly-spoken abstract words and ideas about a topic. My father died a couple years ago and that has changed my life a lot in ways that are still evolving, but I wear a lot of his clothes and hats every day since he died and have shown no sign of stopping soon.

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