The last blog was vintage published writings. Now here is my latest.
Here is my entire 11 article run from the Autism at Home Series magazine, complete and in order. If you are the parent or caregiver of a child with autism, you will find help by clicking the link below.
Here is a link...
...That will take yew to my earliest published work in the advocacy.
A lot "unknowns" are there, including both sides of the official press release for Soon Will Come the Light. Both back covers are there as well as a published review and a few samples sections of writing in the book proper.
Also in the link is a section dedicated to Light on the Horizon, my second attempt at an autism book. This one utterly failed due to an undiagnosed onset of fibromyalgia. You can see it making itself known in the book as you read. Fortunately there are so precious few copies out there (I have a few hundred still in my closet, which means I have most of them) that it isn't really anything for me to worry about. Front and back cover are there, including me being very naughty and writing a blurb for myself under a different name for the book. See if yew can find it and come back here and comment. That'll be a fun game for all of us.
Completed Foreword and Introduction are there. Jan's Foreword (which yew can read) is by far the very best pages of the entire book. As evidence of this, there are a few random snippets and pieces of this book to read as well.
Then we get to the articles. Most of these articles I am still proud of. MOST of them, Enough of them that I am willing to work for the Autism-at-Home Series for a while. (You can look for an album that has some of those articles in it very soon. These articles here are from the National ASA Newsletter, Future Horizons, Various State Societies who asked me to write, and of course other places. The bottom line being that all of these articles DID make it into print and productions somehere....at some time.
Following the articles is the CD library. I had my reservations about making a CD. I really didn't want to do it. There wasn't the kind of money I felt was needed to make it quality. I waw told to go ahead anyway.
So here, in the original track listing, is the sheer disaster of "Soon Will Come the Light: A Man and his Music," I had nothing to do with giving the CD a title, and I never really cared for it. Very little about it is good, except for the fact that kids with autism seem to have a "thing" for the fifth song, "If I Were an Archaeologist." I wrote this with Jan Serak. It is the only song I did on the CD that I did not write alone.
Somehow the younger kids with autism have latched onto this song and demand to have it played over and over. Well, you can play it as often as yew want. If yew want a copy to play elsewhere besides the computer, let me know.
Finally, we do have a section that has lyrics of some of those songs, so yew can sing along. They are not all there, but my faves are. Including the autism song I wrote and did at just about every conference for a few years in the 90's, and never a dry eye there was to be had at the end.
At the time of the CD recording, however, the disease of fibro was tearing through my bones amy muscle. Hard I tried to hide it, the voice of the songs do cry in agony over something unknown. As yew listen, yew will know what the unknown is, because I have just told yew.
It was against my better judgment to put the CD (even more, the entire CD) up here for yew. But it is a part of me. It is a part of my advocacy. Right or wrong, good or bad, or (one can only hope?) somewhere in the middle.
So enjoy this blast into the past as a pre-cursor of the coming first year collection of Autism-at-Home Seres articles I will be posting. I do believe they are far better than what yew will be seeing now.
Still. the articles may be of some help to yew. Come back to the blog and comment and let me know? Thanks. Here is the link again:
Off yew go....
I have written a few more articles for publication in the Autism Expert Report. See below:
When Applied to Behavior: A brief commentary on ABA.
Who Was That Masked Man? What do Autism and Superheroes have in common?
I'm Dreaming of a Quiet Christmas: Some ideas to make Christmas easier for your child.
If you are not subscribed to the report, you can still read these articles at my autism support site by clicking the link below:
I was recently invited to be a contributing author for the new monthly magazine, the Autism Expert Report. I had no idea that anyone anywhere still considered me an expert in the field of autism.
So far I have submitted two articles and I have a third due on the 18th of this month. The two topics I really want to tackle are the Neurodiversity movement and also the self diagnosed. You sure can believe I have things a-plenty to say about both!
But those will have to wait until the magazine gets a following.
In the meantime I have written about my own introduction to autism and also an article on leprosy and the pain of autism.
I'll post the topics of other articles as they are written.
Today I graduated from the Partners class. It was a lot of pomp and circumstance and I really was not that comfortable with it.
We lined up in two lines and they played the graduation music as we filed into the room. Guests and family members clapped and applauded as we filed in to sit on specific chairs that had our names on them. (Somehow it seemed somewhat disprespectful to my own self to sit down on my own name...)
So then they called us up, one by one, and gave us the certificate and then we had to move to the side of the room to be "pinned." I guess you are not an official Partner until you are pinned. That's okay, I like the pin. :)
Then after they called everyone and we had all been pinned, there was a standing ovation. Then, thankfully, the pomp and circumstance was over and it was time to have a little fun. We had a little reception after the ceremony.
So now I am a "Partner"...
There were thirty people at the beginning, only 21 graduated.
Part of me is glad it is over. Part of me is going to miss the classes and the learning.
It was a good experience. :)
Where to begin? *Blink*
It is no secret that I am blessed beyond measure with something most people do not have, which is: FREE TIME. I have been wanting to put that to good use for a while now.
As some of you may know, I have recently been doing research (as in: lots of research, as in: many hours a day research) into the areas of brainwave entrainment and guided imagery. Separate, I believe they would both be a good therapy for autism. However, if there was a way to combine them together (which our current 21st century technology nicely provides, and at a minimal cost!), it could possibly be even better.
One of the many things I have read is that one half hour of your brain in the ?theta? state (3 to 8 hz) can be equal to four hours of sleep. Thus, theoretically, if you could place your brain in that state for one half hour or more, then you would need up to four hours less sleep a night.
You would literally have what everyone says they need, which is ?more hours in the day.?
So last night, I decided to give this a try. The results were far from what I expected.
A couple of years ago, I purchased a Proteus. Of course right after I got it, I started writing programs for it, one of which is available on my site in the download section. (For those worried, the program has been tested. It is safe to use, and even effective.) But at the end of the day, I found the programming language to be very weak and bare bones. There were things I wanted to do with the Proteus that just didn?t seem possible. I was discouraged by this and set the Proteus aside for a while.
Recently while cleaning house, I came upon it again and began to wonder if there was something out there that would do what I wanted. I searched the net and found this programming language ... which is Proteus compatible.
Despite the high price, I immediately purchased it and started playing around. This came with several program samples that had been testing using an EEG, and a few of those programs put you into Theta for a while.
The downside to using this is you need to interface a CD player directly into the Proteus. This is awkward and cumbersome at best, and means there are three wires to get tangled up, and believe me, they do get tangled!
The upside is this program does everything I want, and so much more, and the possibilities are pretty much endless. Even better, the Proteus is just an option. All you really need is a regular CD player for these programs to work.
So I found a 50 minute program that was Deep Theta, and I hooked everything up, started the program, and relaxed to let it to its thing.
What I didn?t know (and this was purely a matter of inexperience, I am sure) was the PoS $12.00 Wal-Mart brand CD player was not able to keep up with the complex programming embedded on the CD. I had to stop the program before it was finished, 36 minutes into the 50 minute program.
This left my brain in a state of complete disarray. It was like part of it was lagging two or three steps behind. Every time I moved or had a thought, I had to wait while a part of my brain caught up to the other part and the rest of me.
I was in a situation where I was literally out of sync with my own self!
I am now convinced beyond a shadow of a doubt that brainwave entrainment is absolutely real, and possibly just a tad dangerous if you don't know what you are doing.
First rule of entrainment: If you start a program, be sure you can see it it through to the bitter end!
The more I research, the more I experiment, the more I learn, the more I do know what I am doing. Practice makes perfect!
When I woke up this morning (and a heck of a time I had getting to sleep!), the problem was still there, though it wasn?t quite as bad. I reasoned that if I wanted to be ?back to normal? again (or normal for me, anyway), I was going to have to run the program again, and this time see it through to the end.
Since I had to go to Wal-Mart anyway, I purchased a higher end Sony Walkman CD player while I was there. The first thing I did when I got home was put some batteries in it and wire it up to the Proteus.
This time there were no problems.
When it was over, my head was back to normal. And I felt like I had just woken up, even though I was never asleep! It remains to be seen if I sleep less tonight.
Meanwhile I have been reading some amazing stories related to guided imagery. I had no idea this concept actually had some science behind it. People are being healed of cancer and chronic pain, just by the power of their own mind. (It was the chronic pain aspect that got me interested in this. I am forever searching for a way to deal with my own constant pain. And, being ever the advocate, the autism side is never far from my mind...)
So naturally I got to wondering; what would happen if we made a CD that first placed the brain into the ?alpha? state (say ? around 14 hz?) then gently brought the volume down on that entrainment to where you could still hear it, but just barely, then over top of this, read a guided imagery script, followed at the end by gently ramping the volume up on the entrainment, taking it to the appropriate place in line with the imagery?
That?s powerful stuff. I don?t think it has ever been done before.
It seems too obvious for no one to have done it by now. I am afraid that I will find some reason why it won?t work and then my bubble will be burst.
But so far I am enjoying the journey and if nothing else, I am getting quite the education.
I have some ideas guided imagery wise for autism therapy I would like to explore. Hopefully I will be able to find people to test some scripts for me along these lines.
Anyone who may be interested in these technologies, separate or combined, is welcome to join my personal online autism support group, Neurointegrity. This is where I will be doing and posting most of my work with both guided imagery and brainwave entrainment.
I still have not gone through all the records (there are a lot of them), but still a few things have become very clear to me, the main thing (so far) being the fact that my parents had absolutely nothing to do with how long I was in the hospital.
That was entirely my fault and my responsibility.
Up until recently I had thought that it was something they would have to live with. But now I see that it is something *I* will have to live with.
My mother told me once that she does not recall the hospital ever saying they thought it would be a three week stay. I very clearly remember hearing that...somewhere?
Looking over these records, it seems as though that would have been correct. I get the feeling, reading these, that maybe that was what they had planned, but I was there for so much longer because I was not exactly cooperating with them.
What I see first and foremost in those records is someone who had some serious trust issues. However obvious this was (or wasn't) to the staff, they never really addressed it. Not that I can remember, anyway. They seemed more content to let me ride and wait it out.
It was a looooooooooonnnnnnnnng wait. :(
Another thing that got my attention was my parents account of my history. There is a year and a half between my two older brothers, and a year and a half between myself and my younger sister. Yet there is a longer space between the two sets of children.
I have always wondered about that?
Now I know. :(
There was an "incident" between the births of the second and third child. I can't say anymore than that because I do (of course) need to protect my mother, unless she decides to post a comment about what that incident was.
But it does leave me with one question...
How long after said incident was I conceived, and is it possible that it had something to do with me turning out the way that I did?
Statistics say it should have been Charlie (or even Jim) who had the autism, not me. That doesn't mean it wouldn't have been me anyway, but still I have to wonder?
In the past I have accused my mother of not wanting me. Now I can't do that anymore because I was, to quote the records, "the most wanted of all."
It would take a lot to convince me this is true, but what I have read is pretty doggone good evidence in her favor.
By the way, Mother (I know you are reading this), in the spirit of fixing this broken relationship, I offer you these records. You and Dad are both welcome to read them. If you would like to see them, let me know and I will send them to you.
If you think you don't need to read them because you already know what they say, you are definitely wrong about that. There are quite a few surprises in them. Some of them are even good surprises.
You'll need a magnifier to read some of them....so have that handy.
Now I have to forgive myself for creating a situation where I had to stay for so long.
I just wish I knew how to do that...?
The good news for my parents is if they were feeling guilty about that, they don't need to anymore. They had nothing to do with how long I was there.
So they can let that go. :)
Since almost the day I moved here to Bedford, my friend Vicki has been after me to "forgive my parents for what they did to me" all those years ago. The "what they did" is an open book (literally), but it wasn't until two years ago on a trip home to Columbus that I realized maybe Vicki was right, and that I haven't yet forgiven them. I thought I had? But maybe not?
I realized, as I was driving home to Bedford after saying a few words at the Brigadier's funeral, that in order for me to truly forgive my parents, I had to know what really happened, what really went on during those three years.
But as the hospital had long since closed down, I figured all records of that time had long since been destroyed.
One day I called anyway, just to find out, and I was told the records were indeed still intact, and that if I wanted them (all 393 pages), all I would have to do to get them would be to shell out exactly $648.26 in processing fees.
It had to be the hardest and toughest decision I have ever made in all of my 42 years.
After actually paying them that much money, and waiting....waiting....waiting, finally my old hospital records came in the mail today.
So far I have looked only at the final year, the year in the day program. There are three easily seen recurring themes:
1. An autistic child who constantly sabotaged any and all efforts to help him, because at the time he wasn't able to trust anyone.
2. Parents who had no clue and a mother who had more than a few issues of her own that needed to be worked out.
3. A team of professionals who clearly did not know what to do to help this family that desperately needed help.
It never occurred to me that some of what was (and no doubt still is) going on in my family was/is due to my mother's relationship with her own mother, as well as my parents dealing with the emotional aftermath of a separate prodigal son. (I get the feeling as I read these records that the staff were never able to quite figure out what that last one was all about...?)
As I read about that person I was twenty some years ago, it was so clear to me what was going on in my head at the time. I don't know if that clarity came by reading the records or if it came by memory of those days, or a combination of both? In all of that final year, there was only one indication, even just one sentence, that gave any indication at all that any of the staff understood me at the time. And certainly, even if they did, they did not at any time give me what it was equally obvious I needed.
Within a few months after I was discharged (apparently for violating a probation, though I do not recall that being the case?), a single girl was able to do more for me in twelve weeks than all these "professionals" were able to do in three years.
The difference between them was Gwendolyn worked her butt off to prove to me I could trust her. No one in the hospital thought that was important enough to do.
Still, I did enjoy reading their thoughts on my relationships with Sharon and Mandy (not to mention the sheer tragedy of Mary Ellen, but we won't go there. Read the book if you are curious). I read about how they couldn't figure out why I was so interested in the comic book super heroes, and I wondered as I read that why they couldn't understand that I was so into that was simply because I could relate to wearing a mask.
But the most interesting parts of those records for me by far were the pages (and many there were, too!) of documents of my parents private therapy sessions. This is obviously information I was never meant to have and things were said and done that I was obviously never meant to know about, though I am not sure it matters almost thirty years after the fact.
As for whether these pages were worth what I paid for them, I would have to say, even though I haven't read even half of them yet, that they are very much worth it because I understand my mother so much better now than I did even a few hours ago.
It was like someone handed me forbidden knowledge. Everything my mother did not (and does not) want me to know about her was there in black and white. I am feeling like maybe I actually know who she is.
I can say the same now also about my father, though to a somewhat lesser degree. There were precious few surprises about him, but it was fun to locate what little there was, scattered about here and there for me to find.
The remaining pages will be much more difficult to read. They have faded with time and they are written in some very bad handwriting. I don't know if I will ever be able to decipher them. I hope I can, though, because I sure did pay enough to get these... And of course I am dying to know they say?
The records written by the psychologist are separate, and I will have to order those later, if I ever do at all. What I have now are records from the staff and social workers.
Some of you may have noticed I set up a section in the gallery for these documents. I don't know if I can post them without revealing stuff about myself and my parents that is best left private.
Maybe I can type in a few quotes here and there in this blog for your amusement and education.
More on this later...
This experiment is suspended until further notice.
Due to unforeseen bloody side effects.
As some of you know, I have been deeply researching TENS and Transcutaneous Electrical Nerve Stimulation for a few years now. Yes, I admit it is a bit of an obsession with me, I am quite fascinated by the idea of using electricity to manage pain.
Sometime last year I had the idea to try this out on my unruly bladder. As it is with many with autism, I find urination to be most painful. And there really isn't much you can do about it. I mean, it isn't like you can just not pee.
I've tried that. Just ask my mother.
But I have always been a bit nervous of feeding electrical current into the bladder. I know others have done this, some even with success, but to my knowledge no one with autism has ever tried.
And so it is that I document this experiment because it may prove beneficial to someone (or many someones) down the road.
The problem I had with this was the possibility that the current might contract the bladder. I won't go into measured capacity here in public, let's just say I did fear there was a chance for quite a mess to happen at any time, at any place. So I kind of stayed away from it.
Meanwhile I continued to explore the use of TENS for autistic sensory integration dysfunction and also for fibromyalgia. Results of this are for another blog or if you are interested you can email me.
Last week there was an incident, which again I won't go into out here in public, that changed my mind and made me decide it was time to give this a try. And I figured it would probably be okay as long as I stayed home in case anything happened.
So I started doing my research. I looked at programming parameters, asymmetrical bi-phasic wave forms, I read up on the bladder, and tried to find the programming that would best suit the job.
(See, TENS works by creating a "gate" to control pain. A very mild electrical current goes between two electrodes (attached to the skin) and the pain signals between those two points are blocked. They stop at the point of the current. So you are still in pain, you just are not aware of it because the pain signals, though they are still there, are not reaching the brain. They are "gated." This is why TENS is often referred to as "a non-drug alternative to pain management". TENS is legally available only by prescription here in the States. We are the only place in the entire world where this is true. All other countries you can go to a pharmacy and buy one off the shelf. One reason for the prescription here may be in the programming. Programming a TENS is both very easy and very difficult. You must know what you are doing or you could do some damage. Fortunately after a few years of playing with these, I do know what I am doing. I asked the doctor for one and he did not feel my pain was bad enough. So I got mine, all four of them, by cheating.)
The challenge here was to block the pain signals while allowing the two other signals to get through. In other words, for this to work, the signal that you need to go needs to reach the brain, and the signal to actually go itself needs to reach the bladder.
For most people, this wouldn't be a problem. But as sensitive as people with autism are, it might be.
What I came up with was to use a particular TENS, this one being the TENS 6000. What I did (very dry technical information to follow) was use the MRW (Modulated Rate/Width) mode. This modulates between the programmed Rate and the programmed Width every 0.5 seconds, going between 50 and 100 percent alternating of the Rate and Width. I programmed the Rate at 80 and the Width at 60. I took the two electrodes (pads) from channel one and placed them on each side just above the hairline. (No, don't bother to try to picture it...) Channel two I put on each side of the spine on the lower back.
I put the pads on around 6:00pm or so and drank around 32oz of water. By 8:30pm I still had absolutely no urge at all to go. I began to wonder if maybe I had made a mistake in the programming?
So I went into the bathroom and turned off the TENS and tried to go.
Maybe I was dehydrated? I turned the TENS back on and left the bathroom.
At 9:00pm I started drinking another 32oz of water. Even this alone would be my complete eight glasses of water for the day.
By 9:30pm I had all 64oz of water and still no urge to go.
10:30pm I finally felt a small urge to go and I went into the bathroom but needed to turn the gadget off before I was able to actually urinate. The good news is it didn't hurt at all as much as usual.
So I'd say it was both a success and a failure. I may just need to tweak the settings or place the pads somewhere else. I'll work on that tomorrow. I'd like to be able to do this without turning the TENS on and off. I also want a better response from the bladder when it is time to go.
Keep in mind that all of this still doesn't mean this experiment will work. Using a TENS is awkward even in the best of circumstances. Placing the pads where they are is even more so. So even if this works, it still may not be a solution to the problem.
Also it is necessary to understand that just because I find parameters that work for me, that doesn't necessarily mean they will work for someone else.
Thus ends my first day.
From the "Hating Autism" blog:
« I'm nearing the end of my rope with Autism. My family has put up with my son biting himself and screaming almost every day for over three years now. I asked in countless places if anyone can tell me why these kids bite themselves and how to stop it. Nobody seems to have an answer. I've endured countless well-meaning people who have told me to give him some rubber thing to chew on. These people have no idea how intense this problem is. This biting is not some behavioral problem. My son appears to be in great pain of some sort. The problem is that he still can't talk and has never given any indication what might be bothering him to cause this biting. The biting disrupts our entire lives since none of the aides who come in to help with Sam can be left alone with him. He can overpower any woman and can easily hurt them in one of his rages. It makes going to work impossible sometimes. It makes helping our other kids with things impossible at times. IT has destroyed countless dinners and has ruined almost every day of our lives. I've had about all I can take. No God damn doctor has been able to offer any opinion about why this occurs and none has been the slightest help in finding a way to stop this. No combination of drugs has been any help. Keeping him off all drugs has been useless. Chelation has had no effect one way or the other. During some long breaks in chelating, the biting never changed. The screaming never got better or worse. I'm done talking about anything to do with autism until I can solve this biting. If I can't find a way to stop it very soon, my son will be going away to an institution. I'm begging for someone to tell me how to stop the biting and screaming. I just can't take it any more. »
Sooooooooo many thoughts on this one. I don't even know where to begin? First we must consider the source. This is from the controversial Hating Autism blog, from the guy who has been saying his son has been making great progress through chelation. There is talk on the net that he is lying somewhere. Either in the progress or in the biting.
Let's set that aside for now.
I would next want to say how bloody proud I am of the people who have responded and left comments for him. Many of the people he has trashed in his blog have come to his rescue in this. There is a possibility (small though it may be) that the post itself could begin a badly needed healing process within the entire autism community. Let me digress a bit here to a similar topic. I have recently been having my own similar problems with biting. The "teething instinct" has been kind of getting away from me lately and sometimes it just drives me nuts. More than one person has been bitten when they have hugged me this past week, though it was nothing I wanted or intended to do, it just happened. The bites and the teething are usually gentle, but one person (my friend Danielle) told me I left marks on her shoulder. :(
In the past, parents have come to me and asked about this. They say their child is nibbling on everything. This can be dangerous. Consider power cords if nothing else. Parents want to know how to stop it. I tell them they are looking at this the wrong way. This is not something they want to stop, they just want to redirect it a bit.
What is happening is the wiring of those particular individuals creates a sensory dysfunction that finds comfort in the teething. Why do people chew gum? Why do people nibble on pencils? The neurological effects of oral stimulation are well documented. Oral stimulation calms the oral, tactile, auditory and proprioceptive senses all at the same time. That's in a person with normal sensory processing. Now imagine you can take that effect and magnify it a few times. That's what is happening in some cases with autism. There is also the endorphin release, which I suspect is also probably increased by the autism. At least in the kids (and adults) that are always chewing on things. Everyone with autism gets something different in the package. Some will be effected by this, others won't. You roll the dice with autism and take the hand you are dealt. I have a few teethers and teething rings (including one which is my favorite) and I can get completely lost in them. The teething draws you in, so there is nothing else except for yourself and the teether.
All that was, all that is, all that will ever be is just you and the teether.
It is like a drug, only it is within your own self. With the constant sensory bombardment these kids receive, they are looking for a way to calm down. Some of them have it in the chewing and gnawing and teething. My personal opinion is this should be allowed in certain circumstances and places. It is calming and it is healing. What you must do is find an acceptable thing for the child to be gnawing on. But this may not be easy. There is a standard "tubing" that is used by occupational therapists for this type of sensory dysfunction. I have tried it and it doesn't work for me. I had to go through a lot of teethers before I found something that did. I still have most of them in the closet, sitting in a box.
Add to this the fact that I am 41 years old. Most of the teething rings out there are designed for someone much younger. So how to find an age appropriate teether? They are out there, they are just hard to find. Maybe one reason I had problems finding what would work for me was because I limited my search to things that looked a bit less juvenile. The chewing, the biting, and the teething are all typical sensory processing anomolies in autism. But I don't think that's what is going on in the quote above. It is hard to say exactly what is happening.
I have seen this in my travels many times and yes it is as heartbreaking as he claims. You want to stop it, you want to stop the pain, but you can't because you don't know where the pain is and you don't know where to look. (I know that my own biting is coming from a sensory processing disorder. And I also know that I am currently and involuntarily biting my friends and other people and objects because the recent changes in weather have brought my fibro out of remission and the pain and the multiple seizures from the autism (brought on by the fibro) are hurting me deeply. And I am hopeful that once the weather decides what it wants to do (instead of bouncing around like it has been) that things will again be as they were before the autumn came. The need is primitive and instinctive and right now it is stronger than I am. I will rejoice the day that changes back again. I won't deny that I love the teething. It is a very good feeling. Sometimes it is even better than a good feeling. But I do not like biting my friends! I want my control back!)
The difference between myself and the child above is that I am not biting my own self. To my knowledge I have never done this. (I hear my mother in Columbus has been reading this blog, she can leave a comment if this is not true. Then again, do I really want to know?) What is happening with the child above goes way beyond just sensory processing. This is more of a self injurious behavior. There are a few different causes and theories about this. One theory is similar to my own biting problems in that the self injury is a release of endorphins, creating a pleasurable feeling. I don't really buy into this theory because certainly the child must realize (at some point, maybe not right away) that biting yourself is not necessary for the endorphin release. You can bite other, far less painful things and get the same, if not a better effect. There is a theory that the biting can be caused by seizure activity. For this to be the case, though, the child must usually be in puberty. (That's where seizures start in autism, and where they started for me.) My understanding is this particular child has not reached puberty.
Still, you can't rule out the seizures altogether. Another typical reason for self injurious behavior is pain. Usually from an inner ear infection or a migraine headache. But this kind of behavior usually involves head banging. However, gastrointestinal problems could lead to a biting behavior. The biting would release beta-endorphins which would block the gastrointentinal pain. Or the child could be gating the pain in another area of his body. By creating pain in one area of the body, you can reduce the pain in another area. (True enough, though I don't recommend you try this at home.) Or, of course, it could simply be the result of frustration from an inability to communicate, since we know the child is non verbal. The list goes on and on. I do kind of wish the original poster had more information in his blog. What, exactly, is the child biting? When does it seem to happen the most? Does it begin gradually and get worse as he goes on, or is it just a sudden out of the blue attack at random times? Has this problem gotten worse as the weather changed (as it has with me) or is it constant through the year? In the past, I have been fortunate to figure out what is going on. Granted, it is rare that I can, and I usually have to be there to witness it personally, but sometimes I do get it right. I do have some advice for him, though I am hesitant to give it to him because, if you check his comments, you will see he has been overloaded with advice already. Mine is different from theirs, but with something like this, who knows which of us is right? He will read this, and if he wants my advice he can comment me and I will give it to him. Elsewise I don't want to add to his advice overload. Meanwhile all I can do is say my thoughts and prayers are with him. Despite the current problems between the biomedical and anti-cure factions of autism, no one on either side wants to see this kind of thing happen. If he ever finds the cause, I would be most interested in hearing what it is. It may help me (and others) in future advocacy. If any of you have any ideas what may be causing this child to bite and to scream, please leave a comment and let me know. Now, if you'll excuse me, I also have my own biting problems to work on...
As many of you reading this know, I have of late been very concerned regarding the direction autism advocacy is going. I have problems with the concept of the neurodiversity movement that seems to be gaining momentum these days.
I do agree with some of what they are saying and what they are trying to accomplish. What I disagree with is the way they are going about doing this.
It seems they feel the way to get what they want is to attack those who disagree with them. This troubles me. It also troubles me that so many of them are "self diagnosed" people with autism. (My problems with this are well known, and it led them to actually put a petition against me on the web. This petition is notable not for who has signed it, but more for who has not signed it.) Any joker can stand up and say, "I am autistic. I am autistic because I said so." This is exactly what has been happening. Autism is hot these days, and, for some reason, which I simply cannot imagine even in a million years, it also seems to be somewhat desirable. If someone is jealous because someone else is autistic and they also want to be, then getting a proper autism diagnosis is absolutely the least of their problems.
It is clear to me, reading what they are saying, that they have not had the advocacy experiences I have had. They have not traveled as I have traveled. They have not toured as many institutions as I have. They have not seen as many broken lives and broken families as I have seen. They have not spoken and networked at as many conferences as I have. They have not been involved in national and international advocacy as much as I have. If any of this were true, they would immediately change the approach they are taking, not to mention a few of the views on autism they have. What they do, they do out of ignorance.
Lest you think I am boasting, I just want you reading this to know that I know exactly what they are thinking, exactly what they are feeling, and exactly what is motivating them. Because I used to feel exactly the same way they do! (Check recordings of my early conference presentations. ACK!) There was a time, believe it or not, when Jim Sinclair and I used to get together to brainstorm ideas about forming an organization ourselves. There was a time when I was going to be the one to fill out the 50(c)3 and articles of incorporation, mainly because I happened to know how to easily get my hands on the forms. That organization went on to be ANI, and at the end of the day I had very little to do with it. Instead I did five years on the ASA board. No regrets, because those five years opened my eyes to the reality of autism beyond my own experiences.
Autism affects each person in a different way. The neurodiverse seem to think the only form of autism is the one they have, and that is, of course, assuming they even have it all in the case of the many self diagnosed who have jumped on the neurodiverse bandwagon. And yes there are cases where autism can be an asset. My friend Temple's work is an excellent example of this, and she admits as much herself. But unlike many in the neurodiverse crowd, Temple and I have both seen the utter devastation this disorder can cause. So I say to the neurodiverse, if you do not want to be cured, that is your business, and, moreover, it is your right. But you do not have the right to step on the toes of those who are looking for something better. And no, I cannot say that everyone out there wants to be cured, but at the same time, you cannot tell me they do. Should a cure ever become available, it is each person's right to decide for themselves. In the case of a minor, the parent or legal guardian will have the right to decide, whether you (or I) like it or not.
There will be some ethical issues to be worked out, such as whether or not you are still entitled to SSI or SSDI or other entitlements should you decide to forego the cure. Do you have a right to continue to be a burden on society when it can be avoided, simply because you are who and what you are? Maybe you do. But maybe also you don't. Thankfully, those difficult decisions are for far greater minds than mine to decide.
One of the most important things I learned while I was doing the advocacy in the nineties is the effect grass roots advocacy has. You can work on a national level as I have to get the word out, but where I was most effective, where I did the most good, was in working to change the world not through any of those very public means, but more simply, and more quietly, one child at a time.
I have been blessed beyond measure in that I have held innocent children's shattered lives in my hands and I have been able put them back together. And even though every time I did this, it was just one child, it was just one family, it meant so much more to me than anything I ever did or could do on a national or international level. I never received recognition for it, I never got an award or a ceremony for it like I did for the more public things I have done, but still it meant more to me because I was able to see that I was making a difference.
A real difference.
In the late nineties all of that hard traveling caught up with me and I came down with a very serious illness. I had no choice but to to leave the work I so loved doing.
That was ten years ago, in 1997. Now, here in the healing Blue Ridge and the Peaks of Otter, I am beginning to feel better for the first time in over a decade. As that decade has passed, I have watched as advocacy has taken what I believe to be a wrong turn. At the same time, I know where my strengths are. Not in the national spotlight, but in the local grass roots.
So as the neurodiverse continue to make noise, I have decided to take a different approach and go back to school to learn to be a more effective and appropriate advocate for the cause of autism. My first class (see details of the class I am taking by clicking here) was last week. The first day we learned about the history of disability advocacy. It was very interesting. We learned about how things were in the beginning in ancient Greece (they threw you in the river and let the gods deal with you) and then we learned how we moved on to the institutional setting. We saw the expose Geraldo did on Willowbrook. That was a definite eye opener. Good job there, Geraldo.
We also saw a documentary on how the advocates who came before us managed to get Section 504 passed in the Senate. That was some kind of amazing viewing. What they did, that took some serious guts. And I am ever so glad they did it back then, because if they tried that today, they would have all been arrested and that would have been the end of it. I admire them greatly.
Then we moved on to the community based setting and learned about that, and how to incorporate into the community. We learned about the problems we still have and how we as a society still have a bit of a ways to go before we get to where we need to be.
The second day we learned how to make a P.A.T.H. (Planning Alternative Tomorrows with Hope), which works out a way for the disabled to have a more productive and higher quality of life. What makes the PATH different is that it is based on what the person wants and desires, not the parent or teacher or doctor or guardian. I like that. :)
Both of these things are fairly elementary, but hey, it was the first class. I sure do look forward to what else I may learn!
After graduation, I will be ?Partner in Policymaking?, which is recognized in 46 of the 50 states. I will have passed national standards and I will have a little piece of paper that tells you I am qualified and able to do what I have already been doing, sometimes effectively, sometimes not, for the last 15 years or so.
I have done my time on the national and international stage. I have made a name for myself, one that is recognized. To most, it is a good name, to a few others it isn?t. What I want to do now is to use any good reputation I may have built for myself back then to get kids (and maybe a few adults) what they need to live happier, healthier, and more productive lives. I want to do this, as I said before, quietly, one child at a time, because that is where true advocacy lies.
This is how you truly make a difference.
Today I did a talk at Lynchburg College. I did something I very rarely do anymore, I agreed to speak on a panel. I did it because I hadn't done it in a while, and I like to do things like this every once in a while to remind myself why I don't do them more often.
It got off to a bad start, or at least I thought it did? I was under the impression that the class I was speaking to started at 9:00am and I got there at 9:14am. (ACK!) But then when I got there I found they start at 9:30am, so I was okay. The teacher welcomed me to the class and I left to wait for the class to begin.
I was walking around the floor when it soon became time for the talk. I was walking back to the class when I came upon a mens room. Now anyone who has ever done any kind of public speaking will tell you the first rule of speaking is to go before you speak. Since the door was right there, I decided to go on in.
So I walk in and I am "getting ready" to ... yeah ... and out of the stall walks this lady from the class! (I really want to tell you who it was, because that makes the story all the more interesting, but I don't want to get anyone into trouble...)
She went on to tell me there "was no toilet paper anywhere in the ladies room" and proceeded to leave the stall with tons of TP in hand. That was fine with me, I wasn't going to make use of the stalls anyway.
So then we did the talk. Us panelists talked a bit about our lives and then we answered questions for a while. I sold four books after. There were 27 people in the class, so the sale of four books tops the 10% average sales that are common with this kind of thing.
I also noticed that the 27 people in the class were all female, which is why I don't want to get anyone into trouble. I have had this happen before at conferences, where there is average of 85% female attendance. I am used to women walking in on me and sometimes maybe "seeing something." (UGH) But I have to say it was the last thing I expected to happen at Lynchburg College!
I had a good time all in all, even doing the panel. Glad I decided to accept the offer.
It is interesting that even after 15 years of doing presentations, there is still much to be learned about presenting.
Several years ago, back in '95 or maybe '96, I was invited to speak at the national MAAP conference. I was invited to moderate a panel of individuals with autism. That presentation turned out to be one of the worst I have ever done. So bad was this moderating that I have yet to be invited back to speak at MAAP, despite my occasional efforts to get back in Susan's good graces.
For many years (over a decade), I felt the reason I did so bad that day was because I happened to wake up with a fever that morning. Last night, I found out (most humbly) I have been wrong for all those years.
I was invited to do a talk on autism and bullying last night at the Blue Ridge Autism Center (where I serve on the advisory board), but there was going to be a speaker before me, and also a video showing. I felt (incorrectly, it turns out) that discussion would be more productive than a presentation in this case. So I scrapped the powerpoint I was working on and made arrangements to "facilitate" a discussion on the topic of autism and bullying. This topic has always been of interest to me (I should think for obvious reasons), and indeed is an important topic to many people.
What I apparently failed to take into consideration was who it was I would be discussing this topic with.
The parents and educators had a lot to say, but very little of it was on the topic of autism and bullying. The ironic thing here is that the only way I would have been able to keep them on topic was if I was a bit of a bully myself. I refused to do that (soft hearted me), and so things got a bit out of my control.
Well okay, maybe things got a lot out of my control.
To make matters worse, I later heard that several people left early because they did not want discussion, they wanted to hear me speak on the topic of autism and bullying. I would have been much better off to stick to my presentation.
But no, I had to try something new.
There was a young guy with Asperger's in the audience and he seemed to want to speak on the topic so I invited him to join me "on stage", as it were. I have done similar things before once or twice in my travels. Sometimes that works out.
Sometimes it doesn't.
When one has presented as often as I have, one tends to get to a point where one takes chances, if for no other reason than to break the monotony of the presenting. However, because I was presenting on something I had never presented on before, it later proved to be innapropriate this time.
When you take chances presenting, one of two things will happen. It will either pay off big time and you will be a hero, or it will fall apart and you will crash and burn.
I have experienced both results more than once. Last night was a definite crash and burn, just as the moderating for MAAP was way back when. I now consider these two talks to be tied for the worst I have ever done.
I am very good at what I do. (Odd that I didn't get that way until after I was somewhat "blacklisted" due to illness), but, like most others, I am not very good at what I don't do. I had never facilitated discussion before.
And I will never facilitate (or moderate) a discussion again.
I will stick with what works. Powerpoint, control, maybe a song here and there as I tend to do.
I still think discussion would have been more productive than another presntation. I really can't say I know how much of this is my fault for not being a bully, and how much (if any) blame the audience can take for refusing to stay on topic.
Either way, my deepest apologies to the Blue Ridge Autism Center. I hope someday they give me a chance to redeem myself. I hope someday MAAP does the same. I'm sure not wanting to let them down a second time.
P.S. This blog entry dedicated with love to Didi Zaryczny, who is always right. One day I will get this through my thick head!
I found this in the current MedicAlert Newsletter and felt it might be worth sharing.
I wear a MedicAlert myself and I have always advocated them at conferences. Below is a testimony printing in the newsletter:
"My son Alex is autistic. He wandered from home one summer day when he was 9 years old. When I discovered Alex wasn?t in our house, I began to frantically search our neighborhood. It turns out he had walked to a store about 5 blocks from home. Since we shop there often, the store clerk recognized him but had no idea how to communicate with him. She called the police for help. The police saw Alex?s MedicAlert bracelet and called the phone number on the back. My wife Debbie was contacted by MedicAlert and we were all reunited at the police station. Everything worked out fine because Alex wears a MedicAlert bracelet. We thank MedicAlert very much for their fine service. It?s money well spent!"
More details on MedicAlert can be found at the link below.
There were three talks going at the same time from 11:15am to 12:30pm. Mine had 166 people, the other two (one was financial and the other was nutritional) each had 83 people.
After my talk, it was time for lunch, Then people slowly made their way to the bookstore where I was doing a signing. At the end of the day, I walked away with $600.00 in book/CD sales. Not bad at all. :)
My friend Jack (okay so he has a thing for metal. He's young yet. And he is a good kid.) came along with me on this trip. He had been wanting to see me speak professionally for a long time and so when thge opportunity arose, he decided to come with me. He kind of accidentally ended up being a part of the presentation. The remote for the powerpoint wasn't working, so he filled in, doing the slides for me.
I was very grateful to have him there. He was also very helpful at the bookstore, and I discovered he is great at good ol' down home moral support, too. Way to go, Jack! :)
Jack and I hung out a bit with Renee, so we made a new friend. That may have been the best part of all of the trip.
There were whispers in the hallway about inviting me back next year to do the keynote. I hope that happens, I would love to present for these guys again.
I had a great time.
Recently I was looking over some of my old posts in the newsgroups (be very careful what you write, they stay there forever! How I wish I could delete some of them!) and I found this little piece I wrote on 09/14/01. I was struck by what a great piece of writing it was (which is unusual for me, I usually don't like my stuff years later), and I decided to post it here.
This piece deals with the controversial topic of the responsibilities of the autistic role models.
>Subject: Be careful with success stories.
>From: Hubert Cross
>There is consensus among us that the books of personal accounts of
>autistics do not paint a picture that is representative of the
>majority of us in adulthood. They give emphasis on the childhood of
>autistics that have successful outcomes. I haven't seen a single book
>yet depicting and Asperger adult with a less than successful outcome
>and the reasons for the failures, and you learn more from failure than
>They leave the dangerous
>impression that everything is going to turn out OK and induce parents
>to adopt an optimism that their sons could eventually end up paying
>for with tears.
Response from Thomas:
As one of the more successful authors, I have to take offense at this. :(
Yes I know that I am not representative of the majority of you in adulthood. As anyone who knows me can tell you, I am not representative of anyone or anything. I am completely unique. This is both good and bad, and both for obvious reasons.
However, the issue you bring up is a valid one, and one I did struggle with for a long time. I would speak at a conference, take my money and run, and then on the flight home I would wonder if I somehow did more harm than good by getting up there to talk.
I did not want to give parents false hope. I did not want to lead them down a false path to believe something that was not true.
Yes, I emerged. That does not mean their child will. It also does not mean their child won't. It is no secret how it happened to me. I didn't just have help, I had the right kind of help (for me) and that is what made the difference. I am also very much aware that applying the same miracle to another child may yield no results at all. This is one thing that is so frustrating about the disorder. One cure does not fit all. Earlier tonight I had dinner with a diabetic and I was just thinking to myself as I was talking to her how great it would be if autism was like diabetes. Give the kids a shot and the problems go away. But it isn't like that, as parents who are trying secretin are sadly discovering. This is another example. That did apparently
work for one child. That doesn't mean it will work for all of them. (It may also be an indicator that there is more than a single cause of autism.)
But also I know, from being in this field as long as I have, that parents DO need hope. This does not mean it needs to be false hope. If there were no Temple, if there were no Thomas, If there were no Sean or Donna, then all those older autism books would be right: we should all crawl under a rock and die because there is nothing we can do about it. I do not believe this is true.
Parents do need hope to go on. I have seen some very tragic situations in my travels. And if those of us who are writing about breaking free were not writing about breaking free, there would be no point for those parents to continue. They need to know, not only from us, but also from other sources, that it is not hopeless. This is the only way they will be motivated to fight for the appropriate services for their children. These kids did not ask for this, and they do deserve a chance. This does not guarantee they will be growing up to write books, but it least they have a shot at it.
And I have nothing wrong with giving hope that someday, somehow, things will get better. Because in some cases I have seen, things certainly cannot get much worse.
Thomas A. McKean
Author, "Soon Will Come The Light"
Over the years, I have changed my mind and opinions on many things related to autism, as new information has become available.
But I think I still feel the same way about this.
It wasn't all that long ago that the CDC announced a new prevalence in autism. For a long time it was 1 in 166, now it is 1 in 150.
I haven't had much to write about health wise lately, so this health blog I think will, as of today, be an autism/advocacy/awareness blog.
Mind you, most such blogs out there are screaming for blood from the parents and professionals. Oh how dare they want their child to be cured! Oh how wrong it is!
You won't find that here. I do not feel the same as those crazies do. They have not done the hard advocacy travels I have done. They have not seen the horrors and families being broken apart that I have seen. They have not seen the pain in the children that I have seen. They speak only out of ignorance.
If they wish to speak for themselves, that is fine by me. I have no problem with it. But to assume they know what is best for every person with autism out there, that is just so wrong.
This blog will try to be a bit more intelligent and caring than those other (unfortunately) hate-filled blogs out there.
Recently I have become interested again in the Proteus Light & Sound Machine.
I bought one of these a while back and it does help me sleep and such. I have written a program for it (click on COMMENT and let me know if you are interested. I will send it to you, or you can go to my download site and get it yourself) and I would like to write more. I am thinking maybe something in the 5.0 mhz range or the 7.83 mhz range.
I'll post here when I get it written.
...who are using TENS UNITS as a non-drug alternative to acute or chronic pain relief, please see the TENS article on my site, which you can read here:
There is precious little information out there about the appropriate settings (pulse duration, width, etc) on the net. I have spent several months researching how these things work and have written an article to help you out.
If you have any further questions, please feel free contact me here:
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