Would have written again, but…


I was just about at the point where cognitively I was getting back to normal and was starting to write the beginnings of blog posts again, and now I have caught some kind of bug. And it’s affecting asthma. And it had better not affect me as badly as the last bug I caught did, because I hate Prednisone. But I’m already back into the moderate range when I’d finally gotten myself solidly into the mild range recently (to those who asked, I now have a Honeywell air purifier in the living room, an IQ Air in the bedroom, and a Miele vacuum cleaner, all of those bought by other people that I’m very grateful to at the moment), and I’m already finding at times that breathing is about all I can concentrate on. So it looks like a lot of boring rest for awhile (and I’ll probably rest less than I should, but it’s what I’m supposed to be doing).


About Mel Baggs

Hufflepuff. Came from the redwoods. Crochet or otherwise create constantly and compulsively. Write poetry and paint when I can. Developmentally disabled, physically and cognitively disabled. 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 in 2014 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.

39 responses »

  1. Sucks to your ass-mar! ; P

    No, seriously, relax for a bit. Lots of folks have stepped up and directed all these new visitors to some very useful reading. There’s plenty of enlightenment to be had in your interim. But thanks for posting *something*; we’re all concerned about you and are glad to hear from you. Much love.

  2. Dear Amanda,
    I wish you wellness – just the act of breathing comfortably can be exhausting. Your willingness to expose yourself to the wonder of the world is courageous ~ communication is key to the human experience! I have not read through your blogs as yet but will, my reason for posting is simple. My son was recently diagnosed and I have been trying to gather as much information as possible to give him the best I can give him. I want to acknowledge your efforts to educate, as only first hand living can be so powerful in its message.
    Take care & comfort…
    Peyton’s mom

  3. Ditto with Danni’s comment, hope your troubles are nowhere near as bad as they were the last time…and that no one suggests (again) that you get rid of your animals!

  4. yeah… take good care of yourself, no matter how boring that gets, & don’t worry about writing until you’re ready.

  5. Rest up Amanda. I also live in Vermont and as you know the next few days are going to be very snowy. Good sleeping weather!

  6. Immune dysfunction does run along with autism. Some important research implicates a “methyltransferase” deficiency as a possible mechanism for autism as well as the associated health problems. Samples taken from cerebral spinal fluid which bathes the brain also indicates brain inflammation in autism. SAMe is available in health food stores and even at Wal-Mart because it improves mental performance, inflammatory disorders and is a critical METHYL TRANSFERASE. I won’t bother you with the biochemistry but I wish you would try it. It would be considered a B vitamin if it had been discovered sooner. It’s necessary for building RNA, regulating DNA transcription and even conversion of some neurotransmitters.

  7. n., that’s JBJr all over, basically. He’s paid (some think) to spread hate for autistics who demonstrate that autistics do develop and – as a result – mess up the mercury militia’s chances of stiffing the drug companies for money.

  8. I hope Amanda was paid by CNN and paid well, those people earn a wage for toting cameras round and presenting, and make a profit from exhibiting people, therefore Amanda soundly deserves to be paid.

  9. wooga wooga wooga wooga wooga wooga
    Annoying flea go Annoying flea go Annoying flea go
    wooga wooga wooga wooga wooga wooga
    Flea go be no more Flea go be no more Flea go be no more
    wooga wooga wooga wooga wooga wooga
    Flea disturb us no more Flea disturb us no more Flea disturb us no more
    wooga wooga wooga wooga wooga wooga

    What? Is John Best STILL here? But that can’t be! The person who taught me this spell SWORE that it was SCIENTIFICALLY PROVEN to be EVERY BIT as efficient as chelation in getting rid of your target! And we all know just how efficient chelation is! After all, so many frauds, er, scientists can’t be wrong! Dang, I must have done the spell wrong …

  10. New comers to Ballastexistenz

    Given that most people in this thread are simply encouraging Amanda to rest, I’m guessing that most of the influx of CNN watchers have either gone away or settled in for the long haul.

    But just in case: if you’re new here and have tons of questions about autism from the perspective of an autistic adult, then I suggest that you go to http://ballastexistenz.autistics.org/?p=317 and then scroll down to the following comments: #56, #92, #102, #105, #133, #134, #138, #147, #158, #161 In these comments, you will find many links to pages within this blog that should answer many of the most common questions that parents and professionals seem to have for Amanda. You will also find links to blogs by other autistic adults and lists of books, on-line discussion groups etc. No, Amanda is not the only intelligent, insightful autistic adult writer. She isn’t even the only one who has been frequently labeled “low-functioning” … which I suppose says something about the real meaning of “low-functioning.”

  11. John Best, what part of Amanda’s phrase “breathing is about all I can concentrate on” do you fail to understand? Do you really think she’s prepared to answer questions that really aren’t any of your buusiness to begin with? (Though, as n. says, it is EXTREMELY unusual for media to pay the people they interview. When you hear about cases in the media — you’re hearing about them PRECISELY because it almost never happens at all. I’ve been interviewed for the media myself so I know this.)

    If you have to persist in being obnoxious, you could at least pause long enough to give Amanda a break until she’s (literally) breathing again.

  12. Dear Ballastexistenz,

    I must apologize for this comment as it has nothing at all to do with your post, but rather it is in response to your video In My Language. It is awkward for me to contact you, for I cannot pretend to know or understand your circumstances. But then again, how can any human claim to truly know or understand the circumstances of any other human.

    Your video was shown to me by a friend. She thought I should see it given my personal struggles with language. Your video made me cry because it finally expressed what I myself have been unable to communicate for so long.

    Allow me to explain my circumstance, as mine is a little hard to grasp. It is a psychological problem… one stemming from my soul. I have been fighting with words as I have found them exceedingly inadequate at expressing that which is essential. I am weary of the importance, the absolute sovereignty that has been given to them… the absolute power they have in our civilization as the only “valid” and acceptable form of communication. Thus we humans have doomed ourselves, in our folly, to a terrible blindness and ignorance of our surroundings.

    I enter this problem from a very different angle… a different end of the cognitive spectrum that society so highly adores, adulates and values. When I as eight I was made to do a cognitive study in my school given my advanced use of language, expression, and in particular, my unusual behaviours. In this study, I was, by their standards, labeled a genius. At the age of eighteen I stopped talking entirely for six months. Later, when I was twenty-two, by the standards of a psychiatrist, I was labeled as schizophrenic… in particular by my use of language. Finding that words could not express what I wanted to express, my vocabulary was heavily laden with non-existent words. Neologisms. And most importantly, my frequent use of sounds, gestures and body language that were by the standards of others “erratic and unintelligible”. I have since shed, by my judgment, both of those labels given to me.

    I also tried to hone words to as much precision as was possible, believing that if I could use a perfectly exact language I could express what it was I wanted to communicate. Though I left school at the age of eighteen, one year from graduation, I returned to university at twenty to study linguistics. But neither in that study, nor in my “precise language” did I find what I was seeking, but rather, found that words would simply never suffice do to their rational roots.

    Recently, some months ago, I stopped all word-based communication (talking, writing, reading) for two months due to my frustration. I also moved to a cabin in the forest where I currently reside. There I have had the opportunity to see the communication of animals, to begin to have a glimmer of their language which encompasses so much more that our phonetic language ever will. These same animals which are so commonly believed to be unintelligent, soulless, for their inability to communicate with words, I have found to communicate in tremendous synchrony with their environment… each presence effecting the communication of all the other animals in the area. It is an all-encompassing language that they use which incorporates not only every sensory function, but even intuition and other forms of non-rational thought. They express the unutterable.

    I believe that you can very well understand how difficult it is for me to talk about this… talk with words about the failure of words. My Livejournal is filled with post after post of failed attempts at communicating this.

    But never have I seen it so accurately expressed than on your video. And this was why at wept at seeing it. I have posted your video on my Livejournal. I hope this does not bother you. I used it precisely because my words could not say what I have been trying to say, but your language did say it.

    And that is the purpose of this comment. To communicate with you. Because I felt an inexplicable urge to contact you and tell you this… an inexplicable urge which only I can understand.

    You are a marvelous person. Many blessings to you. I hope that my words do not offend you or that you are in any way displeased that this comment does not directly respond to the post it is attached to. May you feel better.

    If you have any comments, please feel free to contact me via email.

    Much love,


  13. JohnBest: Amanda asked me to go write that here (her literal words were “I was not paid a cent”) precisely because, with the overload followed by asthma/illness that Andrea just reminded you about, she is still not feeling up to replying, especially not to silly people.
    (i prefer not to cuss on someone else’s blog, or i would say something more descriptive than ‘silly people’.)

    spreading lying rumours about a person who does not even want to be famous and is just trying to tell the truth about their own life (and many other lives as well, of people she has met and researched)… what you do is just low and ugly and… what is your kid going to think of you when he gets old enough to understand how little you respect people like him?!

    or, for that matter, even non-autistics get that this is wrong to disrespect any people this way, not just people like oneself.

  14. Oh look, that writer of the spoof site is back :D. Bless his cotton socks, he tries so hard to be controversial and daring and he fails so miserably.
    By the way John, I realise that you have been trying ever so hard to make people think Amanda isn’t genuine, saying she is pretending to be low functioning. Only, the thing is, you see, she has always said she sees herself as neither low nor high functioning, but with strenghts and difficulties in different areas.
    Oh – and as for your shock revelation that she went to college, yes, she told everybody all about that ages ago and the reasons behind it. Old news I’m afraid.

  15. n. in #58 said: even non-autistics get that this is wrong to disrespect any people this way, not just people like oneself

    Given that I’m non-autistic myself — yah, I can confirm this.

  16. You are a remarkable person, and your films are amazing and impressive. We are life scientists who are trying to figure out the type of environment that would be best suited to and that would most encourage and help autistic persons. Would you be willing to help us with this project?

    Here are a few initial questions:

    When you repeatedly wave your arms about, are you feeling or thinking something in particular in conjunction with the doing of that? Are there certain specific emotions or thoughts that you wish to express in that way?

    Do you have an active dream life? We consider all dreams to have an architectural dimension. Have you had architectural dreams, ones taking place within certain specific architectural surrounds?

    How similar is your will to communicate through typing words and sentences to your will to communicate through repetitive action?

    Arakawa Madeline Gins Jondi Keane Annie Rosenberg

  17. John, please stop posting here. You don’t care how I answer your questions, because you think you already know the answers. There’s nothing productive in a conversation like that.

    CNN contacted the office of the doctor who originally diagnosed me with autism back in 1995, they contacted my caseworker, they knew of my misdiagnoses over the years (even asked my caseworker about meds for schizophrenia), they read my files from more than one agency (more than I have on the web, including brain scans from 1995) and photocopied them.

    I have a complex history. It does not mean that I want to answer questions-that-are-not-real-questions from hostile strangers. It does not mean I have no right to privacy (I have even refrained from saying some things that explain some of this because I don’t want to violate the privacy of others). But there are things you don’t know the whole story on, and will probably never know, because I will never trust you enough to let you find out. I can see though that a little knowledge, combined with a lot of malice, is a dangerous thing.

    But I know how my life has really gone, and so do the people closest to me. You will barring a miracle never believe me on that, but it’s true. And as I learned from Donna Williams, it’s the ones closest to me that matter. She has said:

    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.

    That’s all I’m going to say to you. Please leave and stop bothering me. I don’t have the time or energy to waste on pointless antagonism, especially not now.

    To everyone else: Sorry about not getting responses in sooner. I’m still working on a post about how my 15 minutes went from my perspective, and I’m still sick in bed a lot of the time at the moment. Thanks for the comments, and thanks in particular to n. and andreashettle for fielding a lot of questions for me.

  18. Madeline Gins that is an interesting question, and i wonder if it is impossible to answer, given the variety of autistic persons and our needs / preferences.
    If you can’t be answered soon, let me point you to a few posts, here and elsewhere, that could help give you an idea at least of what you are dealing with:

    http://ballastexistenz.autistics.org/?p=301 (but remember, some non-autistics with certain impairments have similar problems with flourescent lights, and some autistics are UNaffected by fluorescent lights)
    http://ballastexistenz.autistics.org/?cat=130 (i think “autistic style life-skills” category could sometimes have something to do with living environment)
    http://ballastexistenz.autistics.org/?p=252 (inside this post are some infos about what was wrong in ABs previous apartment and what makes her present one more livable for her)
    http://madmadj.blogspot.com/ (sometimes she talks about the way they make their LeisureLand autie-friendly intentional community to fit their needs and preferences)
    http://thiswayoflife.com/helpforautistics.html (there are a lot of practical ideas in here, some of which even if they are written about the workplace could fit other environments too.)

    i have to go becos i am in a library and they are closing. if i forgot something i will make a PS later.

  19. This time I will comment on comments to this post.

    John and similar minded people with whom I am certain you have had to deal with throughout your life countless times, many of whom were probably physically violent, serve as an example to what I am trying to express. There is one word in particular that I really do not like, and that is the word “truth”. The problem with this, as I understand it, is that truth is believed to be a structure of words. That truth can be expressed by words. Or rather, that the words themselves are the truth. I do not at all claim that there is not a “truth” out there, quite the contrary, but most people believe that their description of that truth, depending on their sole angle from which they are seeing it, is the one and only and irrefutable truth. So what we end up with is billions of people walking around with their own take of “truth”, believing it to be the only truth… and this leads to a lot of hate when confronted by other truths, because their own irrefutable truth is put into question, which leads to violence and war.

    There is a difference between understanding and knowing. “Knowing” means that something has been explained, “understanding” means that something has been personally experienced. The first leads to smartness, the second leads to wisdom.

    Just as there are people who look at history and feel anger at the actions of Hitler, there will also be people who look at history and who will hate the actions of Martin Luther King jr.. This is simply their truth. And unfortunately, it is almost impossible to shift another’s truth by way of knowing (through words). Only understanding (personal experience) has the power to really shift a personal truth.

    People such as John are bound, beyond their will, to their personal truth. There will always be people who will dislike, even hate you and your endeavours. But you are a wise person, one who has gone through many experiences, one who has lived through these things. In your comment above, you expressed a certain gratitude for these kinds of people… and that is a hallmark of wisdom, of experience; to know that the positive is inextricably tied to the negative, and that from the negative there is much learning to be had.

    Your actions are incredible. Doubtless, you will be one of the Martin Luther King jr.s of history. Of course their will be adversity, this is necessary as not only does change not come of its own, but change is actually resisted by the majority of people. Why? Because change produces new experiences… and as I stated, experiences do have the power to shift personal truths. And we humans protect our personal truth ferociously, because deep inside we UNDERSTAND just how frail they are.

    In regards to my previous comment… there are things I wish I had not written. I should have had ample experiences to by now understand that I ought not write when I am very tired… but alas, I am not a wise person. Words, of course, did not come out as I had wanted them to. But then again, one of the interesting side effects of my recent battle with words is that I am beginning to lose the ability I once had with them. If I am not very careful, my writings tend to be riddled with errors. This is tolerable, but also, sometimes I say things that I had not intended to say.

    Even in this comment I am bound by words, which unfortunately means that I am locked within the paradox of expressing a personal truth.

    I wish you health. You do very well to rest, for if given a fair opportunity, the body is very wise at healing itself. I wish you luck, I even wish you strength, though you are one of the strongest people I have ever seen.

    Much love (and yes, the love I send to you is a pure love from my core, the love that naturally flows from one human when his/her soul recognizes another human),


  20. progosk,

    Funny, I was going to use Wittgenstein as an example.

    For a person who has issues with words, I talk too much, don’t I….

  21. PS: wondering what others think of that classroom environment described in that article. it would have bored me silly… but then, i have very different (often -but not always- lesser) sensory differences compared to many autistics i have talked to.

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