Furthermore, even though we’ve tried to keep our public writings “pure”, (i.e. free from both persecuted things like plurality and from much more banal stuff that still counts as “additional differences”), looking back it’s clear that elements of those things have still inevitably leaked through. However, as this has been unintentional and undeclared, the end result from the reader’s point of view is more mixup between autism and other things, not less.

I think what we’re getting at is that the approach of being open about stuff and getting criticised for not being “purely autistic” is more constructive than trying to self-censor. People have to learn to figure some things out for themselves; the world cannot be fully preprocessed for them and still retain any useful information.

Hmm, all of this is probably obvious. Sorry for ranting.

Nothing is easy, not stagnation, not fame, not even simple things like going to the toilet or remembering to eat.

But some things are worth the struggle.

And its wonderful to have such a talent in the public eye as yourself.
You have a remarkable honesty, wit and fierce emotional intelligence.

And the world needs you and in between your world will always be just yours, never lose Amanda and your own personal space and you’ll be just fine.

Donna Williams
http://www.donnawilliams.net

Why? (Rhetorical. It doesn’t count.) I dunno. Maybe it has something to do with some past experience or another where I saw injustice done and didn’t feel I participated enough in righting it. Could be a million things. But the fact remains that you have reached me and in me found an open mind, willing heart and thankful soul.

If you have reached me, you have reached many, many more than me. Some may articulate a response, some may react in quiet contemplation, some may become advocates, some may just remain aware. (obviously some may ask inane, irrelevant and invasive questions, never mind the freakishly obsessed.) But we are all forever changed because now that we “know” we can never go back to “not knowing.”

As I struggled to refrain from smashing my television this evening (CNN, again, this time Larry King on the Autism Speaks Benefit,) I realized just how profoundly your story, your blog and your links have affected me.

I will never see autistic people as defective, pitiful, broken bits of humanity again. Never again will the thought cross my mind “what might’ve been.” And apparently, I have little patience with those that do. Never again will I be able to watch a program like that without some amount of anger at the rights of the people we never see, never hear, never even attempt to understand being trampled underfoot in the mad rush to find a “cure” before this “awful disease” befalls one more of our precious children- mostly for selfish reasons that have more to do with imposing an alien set of “normalcy rules in a box” on those who are constructed in a different shape than actually helping with the struggle to survive in a world that isn’t designed for it.

I can only imagine your frustration if you saw it. I felt enough of my own that I was finally compelled to write to you and tell you. Your voice has been heard and I will never ever forget it. I hope that the world is soon blessed with many more like you who are determined not to be placed on a shelf for display but to actively reach those of us who can hear you and are willing to learn to communicate on your terms, not force you into a mold you neither desire nor deserve. Eventually, there will be no more dark corners for the well meaning selfish to hide in.

Should my child be the next of the “precious lost,” I can promise you that she will not face the same challenges that your (our) generation had to face. Now I know better. Now I know she won’t be lost at all and will fight to help her find her balance, her OWN way.

Because of you.

And if you’ve reached me, and even just a few others, and then we reach a few, and those reach a few…

It’s working, Amanda. Thank you for your valiant efforts and your courage.

I am a high school teacher currently working with a young woman who just turned twenty. She does not speak using her voice; however, some claim that she communicates through facilitated communication. There is one particular woman who facilitates her on a keyboard. The woman grasps her shoulder and Chelsea is able to type very coherent sentences. No one else is able to do this and so the big question is whether it is real or is the woman moving Chelsea’s arm. I have a big question mark about its validity right now.

I have begged Chelsea to let me know that she understands me when I speak to her. A few days ago, she did answer yes and no when I asked a few questions. In order to point to the “yes” or the “no” see has to grab my hand and then she is able to point to the correct response.

I have tried very hard to empathize with how she responds or lacks to respond. It is so difficult to understand her though, as you seem to know very well. I cannot tell you how overjoyed I was to see you on the video and then to see you communicate to earthlings using your keyboard. She has some mannerism similar to yours and it meant so much to see and hear you, which affirmed to me that you (and she) are present and aware. It is so hard to know when there is no earthly communication. If she were to finally type a sentence to me and I was confident the facilitation was genuine, well, words cannot fully express the joy I would feel.

One big problem is that time is of the essence, as she can only stay in high school for another year or so. As I said, I only recently began working with her so I do not have much credibility when voicing my concerns. I believe she could be getting better instruction and help here at school. The support group in the school district thinks Chelsea’s mother has unrealistic expectation for what she is able to do. I agree with them but I know the mother just wants her daughter to be able to do things for herself. I believe the tension between what the mother wants and what the school wants is not helping Chelsea. I am new to the scene but have already voiced my disapproval with the way some things are going. I feel as though I can be of help to Chelsea because I am not afraid to ruffle the feathers of those above me.

I have droned on far too long. See if this makes sense to you. If I can find someone who lives locally and who is autistic, but is able to communicate with a keyboard like you, might that be useful to Chelsea? If I can contact someone who successfully communicates with a keyboard to non-autistic individuals, that person could interpret for Chelsea and me. Just like an interpreter of foreign languages, that person could interpret for both of us. In your opinion, does that sound plausible?

Thank you again for being there and sharing some of yourself.

Exactly.

This is quite an issue, actually. Not only are we expected to answer intensely personal questions, but we’re also expected to do it (and other things) for nothing.

I was asked, prior to my appearance at a seminar in Turku, for details of my seminar talk (I was presenting the results of my research from my M. Ed. thesis). I did mention to the guy concerned that other than what was being presented would need to be asked in consultation and I sent a list of my service fees.

There has been no consultation yet, even though he sat for a good half hour and was delighted with the results from my research.

Apparently, being autistic is seen as such a nasty thing here in Finland that even my having a Master’s degree in Educational Psychology can’t cure the simplistic (and utterly bigotted) way of thinking about it as such.

I had been re-reading some of your entries about the CNN interview and just asked one of my daughters if she remembered you giving yourself a few little whaps in the head “on air”. She said “yeah – but I do that to myself and I’m not autistic”. The funny thing is, even though I watched the whatchamacallit (segment) on TV, I don’t remember the head whapping – just how fast you could type and how quick and clever you must be to be able to think and type that fast.

Although I am still relatively new to your site, it is my opinion that you are an intellectual and a perfectionist; add a little autism into the mix and girl, why wouldn’t you give yourself a whap or two? Mayhap (I like that word) your sense of time fragmented because you are working much too hard trying to educate, advocate, explain things to everyone who is asking and not asking you questions, etc. Perhaps you feel obligated to do these things NOW so they will be done. You can do all these things in your own time, when you feel like it – you are really young and have lots of time and by God, with the speed at which you type, you definitely will get all those words out!

I hope I am not saying things that have already been said to you a hundred times – I haven’t read even probably a tenth of your postings yet. This thought came to me when I saw your video “In My Own Language”: the hand movements looked to me like you were reading energy or sound waves (my analogy is you seemed to be feeling the energy waves – like reading Braille – or something). I don’t know what you or the people who read and write on this blog think about the theory of the Universal Consciousness of the World (heck,I don’t even know what I think about it) but I found it comforting somehow to think that might be what you were doing – tapping into the Universal Consciousness. It was, to use the old hippy term, “cool”.

That’s enough of me for tonight. Peaceful,happy, relaxing thoughts to all.

Kathy