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.

Sooo....

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.

Bummer.

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.

By the way...something I have noticed that I find very interesting...

True and clinical guided imagery falls exactly in line with Biblical Scripture. :)

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.

More on this later…

When I was on my way home to Columbus for Christmas recently, I brought along some of JoAnn McFatter's CDs that she sent me. I had been feeling a bit guilty that I had not heard them all and what better opportunity to listen than when I am driving for eight hours?

So one that I listened to was Cloud by Day. Here I heard my new favorite JoAnn song. Track 8, Take Me Away. I talked to JoAnn about it later and she told me it was spontaneous. Prophetic worship. One only need hear the transition from track 8 to track 9 to know this is true. ("Surround me......Like a marshmallow.......")

I have a great admiration for my friend JoAnn because she works without a net.

When I wrote Soon Will Come the Light, I was working the same way. I just sat down and wrote. I didn't think, I didn't outline, I had no idea where the book was going or where it would end.

I wrote for the sake of the writing.

I sang for the sake of the song.

It worked.

But then the book was published and all at once I am professional writer. I felt like I had to write like a professional writer. So one thing I did was to start using Storyview 2.0, which gave me a net.

The problem is now that I have a net, I can't write.

This is evident to anyone who's read Light on the Horizon, which was written with an outline.

I have had an idea for a book for a couple of years now that I have been wanting to write. I have tried and tried and tried again to outline it, but it isn't working. I can see the plot in my head, I know how it evolves, but when I try to outline it, I get nowhere.

Yet this is what professional writers do. They outline before they write. But it isn't working for me.

So I am going back to writing to writing without a net.

Stay tuned...

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.

Sorry, Mom.

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...

My father has not been doing well. :( Neither has my friend, the Brigadier's wife. So I was thinking about maybe making a surprise trip to Columbus. I wanted to walk into the house on Christmas and surprise my folks. That was the plan, anyway. But as we all know, the best laid plans of mice and men...

So first I had to find a car.

Mine seems to have died of old age after 227,000 miles. That's okay because as I have told people, 227,000 is a good run for a car.

But it left me without a way to get to Ohio. So I made an announcement at the church, asking for a car to take to Columbus. They did come through for me this time.

Thank you, Glen and Yaura.

So now I had a 1995 Mercury Sable to drive to Columbus. I was about half way there, in Kenova, WV, when I went to unlock the door and the key snapped in half right in the lock!

That was the end of the trip. :(

I had no key to get into the car, much less to start it. To make matters worse, I was pretty much stranded a few hundred miles from home in either direction.

Never have I felt so screwed!

I spent over eight hours at that gasoline place trying to figure what to do? I had to pay someone $70.00 to tow my car for about 30 feet on Christmas Eve.

NOT fun.

I was eventually rescued by some friends in Columbus who braved the elements on Christmas Eve to come and fetch me and bring me back to Ohio. While I certainly appreciate the sacrifice (thanks, guys), that also left me without a car, and here I was responsible for another guy's car, and I had to leave it in WV and I had no idea what would happen?

Oh, cruel fate! How you mock me!

Meanwhile, I had been talking to Jennifer. For 17 years I had known this cute girl and had no idea how she felt about me? What took her so damn long to say anything?

She says it is because I am the guy and I am supposed to make the first move. Probably right, but she was so cute that I thought she would want nothing to do with me.

Tired of waiting, she finally said something.

So now I had a third reason to go to Columbus.

I did two of the things I wanted to do. I saw the Brigadier's wife and I surprised my parents on Christmas. I even gave my dad a nice Christmas present.

That only leaves Jennifer, who is currently sitting to my left and watching me write this. So of course I have to be careful what I say. :)

(Insert her laugh here...)

An extra key was overnighted to me and I received it Thursday, two days after Christmas. So Jenn's incredibly oddball family, in two cars (???), took me back to WV to retrieve the vehicle, which, in a wondrous Christmas miracle, seems none the worse for wear.

(Right about now my mother must be cringing at that run on sentence.)

Now that Christmas is over, it is time to explore a relationship, something I have not had much good fortune with in my life as the three rings given back to me will attest to. I still have all of them. Each one is different and each one is beautiful, both of those things are just like the girls who wore them for a time.

I wasn't sure what to think or how I would feel after 17 years but doggone it, I think I like her.

She is still very pretty.

(Insert her "Thank you. You're so sweet" here...)

So far, we have made truffles, and snuggled, and shopped, and snuggled and did I by chance forget to mention that we snuggled?

She is an expert truffleswoman.

And, if I may say so, not a bad snuggler.

She works doing customer service for a mail order pharmacy. I have to feel bad for her, in a way, because of her long commute to work. She works a whoppin' three feet from her bed. The gas prices must be horrendous for her with all that driving to get to work and back.

She has talked about moving to Bedford to be with me, which would definitely convince me she is serious. Of course, if she is able to bring her job with her (a possibility), she may even be the highest paid person in Bedford.

And the best part is she will be my Jennifer. :)

This has been a Christmas to remember.

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.

Nothing.

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.

(NOTE: By request, I must make mention that the Donna mentioned in the blog below is NOT my friend Donna who I met long ago and is a very good advocate for people with autism. This is a different Donna.)

----------------------------

I was just recently BANNED from the forums on the IC-Network. This is all due to a misunderstanding on the part of the moderator. I am writing this because I am innocent of what she accuses me of. I feel I have a right to tell my side of the story and I am doing so.

Apparently there is a rule that no advertising is allowed in the forums. This is okay with me, I understand it. But they are taking the rule to an almost autistic extreme by banning me.

I put a link to my site in my signature. It was decided this was advertising. I disagree. They said (Well, SHE said) that since the site sold the book, I was advertising and I was in violation of policy.

What she doesn't seem to understand is that the book sales are just one very small part of the site. The site, contrary to what she believes, is not about book sales. It is a site about Thomas. The site is www.thomasamckean.com, it is NOT www.soonwillcomethelight.com but she doesn't see this. I did stop and think about which domain I wanted before I registered it. I decided to go with www.thomasamckean.com because there is more to me than a book I happened to write.

When I went into that forum, I had no intention of trying to get people to buy the book. I do wish Donna would tell me how she feels I think a group of people with IC would even be interested in it? The book has absolutely nothing at all to do with IC!

She thinks my site is all about the book. It isn't. It is all about ME. She thinks the only reason I joined the IC-Network as to promote the book. It wasn't. If I wanted to promote the book, Donna, I would have gone to one (or more) of the many autism forums out on the net. She thinks I wanted to sell the book because I put a link to my site in my signature.

There are so many others at the IC-Network who have links to personal sites on their signatures, yet they are not banned. I am being singled out simply because I just so happen to have a book on the market.

What Donna is doing to me is unfair and unjustified. If she doesn't want links to sites in signatures, it should apply to everyone. It applies to me ONLY because of the work I do. It is prejudiced and it is WRONG.

The great irony in this is that when I receive my advocacy certification in May (Partners in Policymaking, no less), the "work I do" that she has banned me for may one day improve the lives of those with IC, including Donna herself. If Donna doesn't believe this, she can look at my history of advocacy. It speaks for itself.

So now, because of a misunderstanding and an unwillingness to see the truth on the part of the moderator, I have the word BANNED under my name on the IC-Network. That bothers me a bit. I did nothing wrong and I did nothing to deserve this.

I have tried to work this out with her and she has decided she will not listen to reason. Therefore I really have no choice but to post my side of this story here on my blog where I cannot be banned.

I really wish I did not have to post this, but Donna has left me no choice.

I'm sorry it has to be this way, Donna. I wish we could have worked it out. I could have (and would have) done much for those with IC. But if this unjustified banning is the way you want to treat me, I really am not so sure I care about IC anymore.

And with my track record, that not caring is your loss. You need all the help you can get. You had it. You lost it.

Well done.

As we draw near the end of another Thanksgiving, I am pondering the many things I have to be thankful for.

• I AM THANKFUL for the fact that I am not as depressed as I have been the past month or so.
• I AM THANKFUL for what health I have.
• I AM THANKFUL for the food in my belly, the clothes on my back and the roof over my head.
• I AM THANKFUL for the money that comes my way that allows me to live a comfortable life.
• I AM THANKFUL for the awesome beauty of the Blue Ridge that is right outside my door.
• I AM THANKFUL for my friend Christina, currently taking a break. :-)
• I AM THANKFUL for this nice computer so I can blog.
• I AM THANKFUL for all the friendship and love and hugs from my Friend Vicki.
• I AM THANKFUL for all my other friends who make my life worth living.
• I AM THANKFUL for the spiritual community and family I have in the Blue Ridge.
• I AM THANKFUL for my mother and my father and brothers and sister.
• I AM THANKFUL for my cat, Reiki (RAY-kee), who plays with me and keeps me warm at night.
• I AM THANKFUL for my big queen size bed that I can get comfy and sleep well on.
• I AM THANKFUL for my car running well after 227,000 miles.
• I AM THANKFUL for my motorbike that takes me into the beautiful mountains.

• I AM THANKFUL for a loving God who answers prayer and loves His people.

From here:

http://hatingautism.blogspot.com/2007/11/how-do-you-stop-autistic-self-biting.html
--------------------------------------------

« 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 yet. 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 blessed that I have figured 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...

Since it seems some of you out there are following along with this pathetic depressive state and wondering what will happen next (?), I thought I would post the latest for you.

Today I decided that sitting around the house and/or sleeping was getting me nowhere, so I decided to see a doctor.

It is unfortunate that the one who was there was one I had only seen once or twice? I told her I was depressed and I was on three drugs already and I didn't want to be a pharmacy.

I think she got a bit angry at me for that? She said, "Well, what do you expect me to do for you, then?"

And I said, "Well, can't you like say some magic wrods or wave a wand at me or something and just make it all go away all at once?"

She wasn't amused.

But she did offer me free drugs. She gave me a whole month of Effexor XR to take and told me to come back in a month. I told her if they were samples that I would be willing to take them for 30 days to see what happened.

Then, just as she was sending me on my way, I told her also that the pain meds for the fibro had not been working since the weather changed and she quickly wrote me a prescription for double the dose I am taking. That means I go from 900mg a day to 1,800 mg a day. Quite a difference!

I have mixed feelings about this. I don't like that I am pumping more prescription pain drugs into me, but at the same time I have to realize that if I am not feeling pain I am not so likely to be depressed. And even if I am taking twice as much, still they are not (yet) narcotic (hopefully they never will be) and that's a good thing, too.

Oh yes, I forgot to mention that she told me since I am depressed, I need to see a counselor. She gave me a card of someone and told me to call her.

I looked at the card and realized I'd rather just talk to Vicki. (Vicki has had training and experience in counseling, just as I have. Too bad I can't just counsel myself?) I'll have to ask her about that when she gets home from Maine next Wednesday.

Meanwhile, viva la' pill popping, I guess.

I really, really hate taking medications, but this doesn't mean I have to do this forever......I hope.

I am still feeling a bit down these days. Yesterday I ordered this book...

http://www.amazon.com/Seasonal-Affective-Disorder-Dummies-Fitness/dp/0470139994/ref=pd_bbs_sr_5/102-0128282-7995346?ie=UTF8&s=books&qid=1194408961&sr=8-5

...I got the ebook version online and began reading it right away last night.

So far I have read the first two chapters. Of course the book says to "talk to" someone because that may help. But yesterday I tried that already with someone here in Bedford and she went all charasmatic on me. Following the nutty charasmatic "name it/claim it" doctrine, she told me I just needed to claim my happiness. *Sigh*

Vicki is out of town, doggone it. Now there's a woman with common sense. Where is she when you need her?

I was pondering seeing a pain management person, assuming of course I could find one around here? But I don't want to be one of those people who pops 17 different prescriptions a day. There must be a better answer than drugs. I've had quite enough of this fibro.

I also pondered buying something like this...

http://www.amazon.com/Apollo-Health-GoLite-Spectrum-Therapy/dp/B000C1946S/ref=pd_bbs_sr_2/102-0128282-7995346?ie=UTF8&s=hpc&qid=1194464440&sr=8-2

...but if you read the reviews, you will see maybe that isn't a very good idea.

Anyway, that's where I am these days. I have class next week and homework to do for it, but I find I am not feeling very motivated to get it done.

Life sucks. Then ya die.

I am feeling really down lately. I did a benefit concert about a week ago and I have not felt good since.

I have rarely left the house (except to see my friend Vicki a couple of times) because I am feeling very agoraphobic. I am running out of groceries but I just have no desire to get out of the house.

Parents of kids with autism are loving this because I am spending my days posting on internet autism forums (something they have wanted me to do for years) but I don't know how much it is helping them? I hope it is at least some.

What is happening is the barometric pressure is messing with the autism and fibro and it is making me feel miserable. No energy, no motivation, very depressed. I am aware of what it is, yet there doesn't seem to be anything I can do about it. I am trying to work my way past it, but that isn't working.

There is a part of me that is feeling guilty because I feel like I should be more productive. But I just don't have the energy or the motivation to do anything. I have been sleeping eight hours a day but now I find when I wake up I have been sleeping for 11 hours! Crying a lot for no reason, too. And don't even get me started on the fibro pain. Unbearable sometimes.

This happens to me every year around this time. (I hate this time of year!) I know that I will eventually get over it, but it will be a rough road to the end.

Bummer.

Sometimes I do not like being Thomas.

Last night I finally did the benefit concert. NOW is quite my most favorite part, the part where it is over! :) Below are some pictures and comments from last night for your viewing and reading pleasure.

This is the sign that people saw (and that I saw) when we all first walked into the church. I can see why they want to raise money of this is the best they can do? :)

This is Didi sitting at the $$$ table. We raised $345.00 for the Central VA Autism Action Group last night. Also, I made $138.00 in book and CD sales. I gave Didi $30.00 of it for the cause. There was a nice lady there who told me her son had just been diagnosed with Asperger's in March. I told Didi to give her a discount on the book and CDs. I am just nice that way.

Sign for coffee and desserts. There was a lot of food donated by the church, but I don't recall seeing anyone actually eat any of it? I have heard from two people that the food was well received and people went back for seconds.

This is me, I am not sure at what point in the concert? The first thought I had when I saw this picture was, "I need a new pair of jeans!" I am guessing the transcutaneous electrical nerve stimulator may have added to the bad fit, but if you think I am doing two hours of music without getting wired to one of those beasties, you can just think again. Note the wires in disarray all over the floor. Funds are needed, indeed! There were a lot of music stands set up but I only used mine once. I have always felt it is best to know the material already going into these things.

On the left is Dan, who recorded the whole thing. (Apparently while waiting with baited breath for me to do some Townes Van Zandt, which never happened.) At the time of this posting, I have not heard any of the recording yet. On the right is Joe at the sound board. There is no doubt at all in my mind that the evening would not have worked at all without Joe. So my deepest thanks to Joe from both myself and the Central VA Autism Action Group. By the way, I told Joe I wanted to be just like him but he told me I can't do that unless I grow a goatee.

This is Ted and I attempting the Tennessee Flat Top Box. We rehearsed it God knows how many times and, as I said just before we played it, we never got it right. We didn't get it right this time, either. I thought that only I was going to make a mistake, but Ted made one, too. But unlike mine, I don't think anyone even noticed his. Lucky Ted! I enjoyed this one. Sometimes the songs that don't quite work are the most fun.

April performing a touching rendition of Wind Beneath my Wings.

This is during Sunshine on my Shoulders, probably the best song of the night. My worst fears about doing this song ironicly came true when Charee (playing keyboard) just could not keep herself from singing, even when she knew she wasn't supposed to (now how did I know that would happen?), but the reason this song worked was because of her vocal harmonies. So we will just let it go.

Me and Nancy singing I Believe in You, from Dylan's Slow Train Coming album. I had been wanting to do this song with her for years. I never thought it would happen? Right after the song, Mic was in the audience with a "Thank you, Jesus." That seemed to add just what the song needed at the end.

Me and Mic and Danielle do Third Day's You Are So Good to Me.

Final pic is of myself and Joe wrapping things up, first with a song he wrote (Sometimes) and then with a song I wrote (Soon Will Come the Light, the book was named after the song). I did the first verse of the second song and then sat down in the audience to listen to Joe finish it. If I had remembered that little part in the end that I had to do to finish the song, I never would have sat down. :(

My thanks to everyone who was involved with this. Together we raised just a bit of money for a good cause.

Would I be willing to do this again? *Sigh* I don't know? Ask me when I have heard the recordings...

All of a sudden there seems to be a lot of TCC people reading the blog? Maybe they are looking for more information for the fund raiser. Below is from the official announcement (if you can call it that), sans formatting:
_________________________________________

Saturday Night Coffee House to Benefit Autism

Featuring the musical talents of
Thomas A. McKean
Award winning songwriter, Advocate,
Author of “Soon Will Come the Light:
A View Inside the Autism Puzzle”
and guest on the Oprah Winfrey Show

Saturday, October 27, 2007, 7pm to 9pm

Timberlake Christian Church
20261 Lynchburg Hwy
Lynchburg, VA 24502
On Route 460 near Wildwood Subdivision and 7-11

Thomas has served on the National Board of Directors for the Autism Society of America, and has appeared on the Oprah Winfrey Show. He has traveled extensively throughout the USA and Canada speaking at conferences and serving as a private autism consultant for families and school systems. For his work in autism advocacy, he has been commissioned as an Honorary Colonel (HOKC) by the Commonwealth of Kentucky, the highest honor awarded by the Commonwealth. He has also addressed the Senate and Congress regarding disability issues, funding and awareness. His book, Soon Will Come the Light, has won a national literary achievement award and is required reading at several colleges and universities.

Come join us for family friendly evening of
entertainment, desserts and fellowship!
$3 admission for single/$5 for two – bring a friend!
Small fee for coffee, desserts and soft drinks
All proceeds to benefit local programs for Autism
_________________________________________

For those TCC people reading, the stage will have three microphones, a keyboard, and two plugs for the guitars that will go directly into the sound board. I hear you have everything except the guitar cords.

See, I am smart enough to put people on the stage who are better than I am. I am also blessed beyond measure to have such talented friends who are willing to do this for me.

Earlier today I was at my own church (Lion of Judah Ministries) and I was recording some of the stuff I was thinking about doing so I could play it back and listen to it. Some of it I liked and some I didn't. Sometimes it was even different parts of the same song.

It is getting down to the wire. Some of the songs we have down and some we don't. So I suspect some will go better than others. But isn't that always the way?

First half will be secular, the second half will be a bit more Godly. I noticed, after I put the roster together, that none of the "award winning" songs (mentioned in the announcement above) made it into the program. The fact is that even though some of my songs have taken awards, those that did are not my favorite of what I have written.

Well, there is always next year.

IF this goes well

and

IF I am invited back

and

IF I decide to go through all of this again.

A lot of IFS!

Stay tuned...

From ABC affiliate WCPO, channel 9:
Reported by: Lance Barry
http://www.wcpo.com/mostpopular/story.aspx?content_id=1faaed2c-0902-4c23-8d9a-52c47e6bd24f
(Click link for story, video and parents response...)

------------------------------
A six-year-old autistic boy has been charged criminally after an incident inside his school where he allegedly assaulted a teacher's aide.
--------------------------

Alas, you will have to click on the link above (which may not even have the story anymore by the time you read this) to get the full story because of the copyright notice I am unable to print the whole thing. :(

What happened was a six year old child with autism (who has the mental capacity of a three year old) apparently had some kind of altercation in his mainstreamed kindergarten classroom that resulted in him physically attacking his aide. Details of what started the incident are not given, but what we do know is the aide has pressed criminal charges against the child. The superintendent of the Bracken County, KY schools is backing the aide, and the courts have decided there is enough evidence to go to trial.

Here is what I find to be the key sentence in this article:

His parents believe Schiltz and other teachers there are ill-prepared to handle special needs students.

Well....DUH!

The kid is six years old. As far as his little noggin is concerned, he may as well be three years old. Don't try to tell me the aide (and the teacher) didn't know this? His parents are doing all the right things, at least as far as I can tell from the (VERY) limited information available in this article. He is integrated in a regular classroom and he has an aide.

The little guy is just a kindergartener. Wasn't there something this woman could do to protect herself? Seems to me as small as he is, there must have been something she could have done.

Then again, we do need to take into account the possibility of the "rage factor." It is unclear from this article what was going on, but I have seen in my travels pure rage in some kids with autism, and, unfortunately, when they get that way they somehow also have the strength to back it up.

BUT...

This rage usually tends to come more from sensory overload than it does from anger. My observations are the overload is usually (though certainly not always) auditory based.

Hard to tell who is at fault here. But the first and most obvious thought I am having is that there must have been something that led up to this incident. There must have been something building up that eventually erupted into what happened, so the aide should have been trained to see it coming and to deal with it appropriately before it got out of hand, even if that meant the two of them would leave the classroom for a while so he could settle down and get it together.

I have seen this in more than one IEP. Looks like it should be added to his.

Certainly the other students did not need to see what happened.

The kid is definitely not innocent in all of this, he was indeed most naughty and he was absolutely behaving inappropriately. But I am thinking the majority of the fault here lies with the aide, who knew her charge had problems and who did not do the job she was being paid to do.

I am sure there is more to this story than what was reported (there always is), this opinion is based solely on the facts in the article linked above.

Yesterday I posted on the Autism Speaks message boards. When I woke up today, the thread was closed.

I come in somewhere around page 11, and I said the following (sans formatting):
----------------------------
Re: My take on this issue...

It is no secret that Amanda and I have a bit of a sordid past. This started (if any of you are wondering) when I agreed to speak at the ARK political rally in DC in April of 2000. This was a rally that was timed to coincide with the first Senate vaccine hearings.

I was in the room when those hearings took place.

Amanda and Laura were just ever so livid that a prominent person with autism such as myself would dare to support a cure for the disorder. Well, now it is seven years later and I still support a cure for the disorder.

If you go back and listen to my early conference presentation recordings, say, ’92 through to about ’94 or ’95 or so, you will see that I was once like the neurodiversity. I got up there on that stage and I told those people listening, I said, “Don’t you dare try to cure us! There is nothing wrong with us that needs to be cured!” Amanda and Laura cheered, I am sure.

But then I had an experience that Amanda and Laura and the rest of the neurodiverse have not had. I saw the reality of autism.

I toured more institutions than I can count, I did private consulting for more families and school systems than I can count. I spoke at more conferences and networked with more parents and individuals with autism than I can count. What happened was my work with ASA and with advocacy in general apart from the ASA got me out there to see what autism really is. Not just here in America but also in other parts of the world.

What I saw was pure suffering. These kids, these adults, these families were hurting and hurting badly. I held mothers as they cried in my arms because of the bleak future they knew was coming for the child they loved. I saw those children themselves bang their heads against the walls, I saw them cry, I heard them scream in agony, unable to tell us what was wrong. Because we didn’t know, both the parents and I were unable to do anything about it.

I saw utter, complete, absolute hopelessness.

And, on very rare occasions mixed in with that hopelessness, I was blessed beyond measure to personally witness a miracle or two. One beautiful, little autistic girl swallowed SIX AAA batteries. I have the x-ray to prove it. Her mother (who is reading this post) called me crying and in hysterics because she was absolutely certain her daughter was going to die. Worse, she blamed herself for putting the batteries in the drawer where they were kept.

There was nothing I could do to make her feel better. She was inconsolable, as I am sure I would be if I felt my daughter was dying. All I could do was listen to her cry.

Somehow the daughter not only survived, but she has been making progress.

Those in the neurodiverse have not seen these things. At least not to the extent that I have. If they would have witnessed what I have, the approach they would be taking would be completely different. What they know of autism comes from their own experiences and a few internet buddies they have.

What I know of autism comes from many, many years hard traveling and hard advocacy and seeing undeniably the harsh reality of the disorder.

It is also no secret that I am deeply troubled by the growing amount of people who have stood up in public and said:

I have autism. I know I have autism simply because I said so.

These self diagnosed are sometimes speaking at conferences and misleading the parents who are attending. I expressed my concerns about this and Amanda posted a petition against me on the web, which both Kevin and Anne have signed.

Quite frankly, I am not sure I really care. What is so notable about the petition is not who has signed it, but who has not signed it.

I have no problem with the self diagnosed speaking at conferences. What I do have a problem with is the self diagnosed speaking at conferences, claiming to have autism. If they are up front, and tell the audience at the outset that they are self diagnosed and “feel” they may have autism, then each person in the audience can, and should, make up their own mind as to the validity of what they are saying.

I also have a problem with the neurodiverse demanding the money for themselves that is currently going into research. This is profoundly selfish in my opinion. They are not able to see beyond their own noses, and they are not able to see that the research can only benefit them down the road.

I am of the opinion that a cure is unlikely to be found in the lifetime of anyone reading this. I think, if we are lucky, we may find a way to prevent it. I am very hopeful this will not involve abortion as it does with DS.

Meanwhile, the research will find answers that, in the meantime, can (and will) benefit those who do have autism currently.

Do I feel there needs to be more money to support those with autism? Absolutely. If you don’t believe me, you are free to take a look at my own bank account. But that money cannot, and it must not, come from the money going to research.

I could not believe it when Kassi started writing Washington to try to kill the Combating Autism Act. I myself have stood before both the Senate and the Congress asking for money. Money for research, yes, money for a cure, yes, but also money for those of us who need it now. Kassi was working to undo that work I did.

It was like she was slapping me right in the face.

Here is the bottom line of where I am coming from: If you have autism and you do not want to be cured, you have that right. I will not get in your way. Whether or not you will still have the right to benefits and entitlements if a cure is found will be up to the courts to decide. As far as I am concerned, you do have the right to decide for yourselves. If you are a minor or if you have a legal guardian, then the decision will be theirs, whether you (or I) like it or not. As Donna rightly pointed out, that is the law of the land. We must abide by it.

What you do not have the right to do, however, is to speak for everyone in the world with autism in saying we need no cure. Even I have not met “everyone” with autism, but I have met more than enough that would fight to be first in line for a cure, and you do not have the right to deny them of that. You do not have the right to deny them the money for the research that will improve their quality of life.

The neurodiverse need to stop speaking for all with autism and to start speaking just for themselves. They are no more the “real voice of autism” than the ASA is.

The real voice of autism is that girl who ate the batteries and lived to tell about it. The real voice of autism are those who are rocking away in the corners, forgotten in the halls of the institutions. The real voice of autism are the ones in the special ed classes getting the crap beat out of them during recess because they are misunderstood. The real voice of autism are the ones screaming all through the night for reasons they are unable to tell us.

These are the real voices of autism.

I have seen both sides of the Amanda argument. Frankly, I can’t decide if she is legit or not. This is okay with me because at the end of the day, it is not for me to judge.

However, whether her diagnosis is valid or not, she has a deep responsibility if she is going to be out there representing the autistic population. One of those responsibilities is to be open minded to different points of view.

If she would do this, if she would open her mind to experiences beyond her own, she may well be the best damn advocate autism has ever had. And yeah, that includes both myself and my friend Temple.

But until she decides to do this (if she ever does), her advocacy, and her motives, will remain a bit suspect with me.

And apparently with several others if I read this thread correctly.
--------------------------
You can imagine such a post would get quite a response, and it did. Apparently the people at Autism Speaks weren't too happy about that because they closed the thread.

Meanwhile, Kevin Leitch, not one to let things go, started a new thread to pick up where the old one left off. He is asking: What is Neurodiversity?

I'd like to try to answer that, not there on Autism Speaks, but here in my own forum.

Kevin, as you saw, was asking for proof of the claims that parents are making that neurodiversity is out to get them.

He is missing the point.

If neurodiversity wants to be taken seriously, they need to stop using such hateful words as "curebie" and such. These "curebie" people are parents who want something better for their child. The neurodiverse viciously attack them for it, saying they are basic scum of the earth because they are unable to simply accept their children the way they are.

But I know something the neurodiverse do not appear to know, which is that parents do love their children the way they are.

My parents love me the way I am. Yeah, it took me forever to see this, and in some ways I am still learning. Part of this may be my own skewed way of seeing things, and it may also be in part because of the way(s) they have chosen to express said love. But the bottom line is that I know I would be either on the street or dead if they were not doing what they are for me. I don't think they would make that sacrifice they are making unless they truly did love me.

On the other hand, I am also guessing my mother (who, as I have already said here, I just recently found out is reading this blog...HI MOM!) would like to see me cured of whatever demons are bouncing around inside me.

Is this wrong?

The neurodiverse would say it is. But I am not the least bit offended that my parents may feel this way.

I have seen enough in my advocacy travels that I am certain, beyond even the slightest shadow of a doubt, the parents love their children.

Yes, there will always be the occasional exception. I have, more than once, run into the idiot father who's pride, ego, and arrogance has made him say, "You can't be my son. My son would be perfect!" The marriage doesn't last much longer after that...

And, in much rarer cases, sometimes it is the mother who has the problem.

But these situations are, mercifully, quite rare.

Then along comes this "neurodiversity" who says, "If you can't love your child the way he or she is, and stop looking to make things better and stop trying to improve their quality of life, then you are the worst parents ever."

To say such a thing makes them, in my opinion, just as bad as Bettelheim. Maybe, God forbid, even worse. They are doing unbelieveable damage to the parents when such things are read and heard.

Kevin and a few others in the neurodiverse claim they don't say these things and that none of it is true. Yet this one fundamental principle is the very foundation of neurodiversity. If they have a problem with me saying this, I would suggest they read their own blogs. The proof is right there.

The fact that a cure doesn't exist (much to my own mother's dismay, I am sure) is not the point. The point is that here we have a group of people who are saying it is wrong to even want a cure. Worse, we have a group of people who are taking a proactive stance on this, even going so far as to write their senators and congressmen to not support the bills that give money for research into finding answers for autism.

Instead, they say, give that money directly to them, so they can live better lives.

Do nothing to fix this problem. Let autism continue until the very end of time. I love me the way the I am. GIMME YOUR MONEY!!!!! And when the 1 in 150 are born forever, give each one of them money, too! I don't care if you don't have money left for anything or anyone else. They are not important. We are. We are the most important people out there because we are autistic dammit we are proud to be!

(Insert waving of the flag and beating of the chest here...)

Whether they realize it or not, this is the message they are sending out to the world.

I have nothing against a bit of autistic pride. It sure beats jumping off a cliff because of a disability. But this extreme way of thinking is just carrying things too far.

Unlike many others who are against the neurodiverse, I personally feel they have a lot to offer the autism community that is very positive and uplifting. But before they can do this, they need to get off of their high horse and realize that parents are not bad people for wanting a cure. They need to realize there is nothing wrong with loving your children enough that you actually want them to have a life and a future.

If they could just understand this one, simple truth (which, by the way, is staring them right in the eyes and they choose not to see it), then they could literally change the world and do more to advance the cause of autism then anyone has ever done before.

But that won't happen until they stop thinking they know better than the rest of us.

Because they don't.

They also seem to feel it is okay to pass themselves off as autistic simply because they say they are. Why in the world anyone would actually want to have the diagnosis of autism is way beyond me, but apparently it has become fashionable and desireable to be autistic these days. (*Sigh*)

This is incredibly misleading to the parents. Parents are, naturally, hungry to devour any and all information from those with autism who are able to speak into what the autistic disorder actually is. Herein lies really the one and only window into the world of their child. So when Joe Anyone walks off the street and "says" he has autism (even if and/or when he does not), Joe Parent sits up and takes notice.

Again, untold damage is being done. Parents are getting false information that will hurt them and their child and their families.

This is the way I (and many others, as seen on Autism Speaks) see the neurodiversity. They say we are wrong. I say they need to prove it. Stop attacking parents. Stop attacking the people with autism who want to be cured. Stop trying to get the money for yourselves that is going to research. Stop saying you have autism when you don't know for sure that you do.

Start advocating for the parents as well as those with autism. Stop calling them curebies and other stupid names.

That will get you nowhere.

Today I did a bit of worship leading at Timberlake Christian Church in Lynchburg. Good times.

I was to do a "special song" before the sermon, and then another "special song" during the communion. The communion one made me a bit nervous, I mean what kind of responsibility is that, doing music for communion? ACK!

So when I got there (Hi guys, I am sure the TCC people are reading this...), I saw they were doing a song, Lord, I Lift Your Name on High - which is one of the songs I really like to play a harmonica with. So I asked to sit in and that ended up sounding pretty much like what it really was, which was unrehearsed.

They told me there that they enjoyed it, but, unlike them, I know what I am capable of playing on the harp. I know I can do better. Far as I am concerned, I totally butchered and destroyed the song. :( A lesson in the value of rehearsal, to be sure.

I have no doubt they will leave me comments telling me I did fine on the song, and maybe I did, after all. But I could have done better. Much better.

The two songs I did rehearse, Here I Am to Worship, and Breathe, those went well. I am glad for that. I played both of those on the guitar. I wanted to play a bit of harp on the first one, but I couldn't locate my holder. I need a new one anyway. So I am ordering soon so I can have it for the fundraiser concert I am doing next month.

So... After the service was over, that keyboardist, Carol (Hi, Carol!) and I sat down and played Lord, I Lift Your Name on High again.

I nailed it.

Why couldn't I have done that before? :( Then we started playing around with a few standard hymns. Like:

Amazing Grace...

Nailed it.

How Great Thou Art...

Nailed it.

This is my Father's World...

Nailed it.

Meanwhile, the few people who were left, they came back and sat down again because they wanted to hear the two of us play. I can see why, really, because I see that she and I do sound pretty doggone good together.

I'd like to explore maybe doing some more collaboration.

My favorite of those was the last one, This is my Father's World. I really like the way we sounded together playing that. No vocals, just a keyboard and harmonica. I think that would be killer for a communion.

ADDENDUM: It is now 9:16pm the same night, six or seven hours after I wrote the above. Earlier tonight I went to a worship service in Moneta, hoping to play a little harmonica. Imagine my surprise when the songs they chose were, Lord, I Lift Your Name on High and also Here I Am to Worship. ACK! I had just played those this morning! There was a rehearsal of Here I Am to Worship and I joined in, playing pretty much harmony. I liked the way it sounded so I decided to pull out the harp later on when they played it at the service. Never got a chance to practice, Lord, I Lift Your Name on High, but figured it would be okay because I had just nailed it this morning.

So... The first song was Here I Am to Worship. That went very well, I think. People told me later that they enjoyed it. Then came Lord, I Lift Your Name on High, and for the second time in less than twelve hours, I totally destroyed the song. :( I have come to the conclusion from this, the only conclusion, really, that I can come to, which is that Lord, I Lift Your Name on High is a very difficult song to play on the harmonica.

So the pastor of that church (also named Thomas) made a comment to me as he was leaving that he would e-mail me the songs for next week as soon as he knew them so I could practice.

Driving home, I realized that, also in a time span of less than twelve hours, I found myself, to some extent, on two praise teams. Not only that, but I am playing the harp, which I totally love to do.

The only problem with it is that neither of the teams are from my home church, which is where I really want to play. :(

Maybe they will see that others feel I have the ability and give me a place on the team. One can only hope.

I do so love playing praise with a harp. :)

I have never been 100% convinced that vaccines cause autism. This is no secret, everyone knows it. I was there in the room at the Senate hearings in 2000 and they just failed to convince me. Nor have I been convinced since.

Still, I see the possibility. I am not so single-minded that I discount it entirely. So I do try to keep with the debate.

I don't usually post the (gazillion) vaccine articles I read and/or get in my e-mail, but this was very compelling and, unlike others, it actually kept my attention. If this data is accurate (and it can be verified, I should think, should anyone care to verify it), then maybe there is something to this autism/vaccine debate after all.

Whether there is or not, below is an article which may well be a step in the right direction of finding out.
------------------------------------
America, Meet Our Unvaccinated Kids, Version 2.0
http://www.rescuepost.com/rescue_post/2007/09/america-meet-ou.html

By J.B. Handley

Back in June, we released what we felt was an astonishing data set for the first ever study
comparing the rates of ADHD, autism, and asthma between vaccinated children and
unvaccinated children. Our conclusion was weighty:

"We surveyed over 9,000 boys in California and Oregon and found that vaccinated boys had a 155% greater chance of having a neurological disorder like ADHD or autism than unvaccinated boys."

And, the mainstream media wouldn't touch it.

Cynics will say this is because our survey was only a "phone survey" despite the fact that phone surveys are reported in the news every day, and despite the fact that the CDC uses
a phone survey to establish the prevalence of…autism!!

As the Director of the CDC's two phone surveys on autism noted: "the consistency of
prevalence estimates across the two surveys supports high reliability or reproducibility of
parental report of autism and reliability is one important component of validity."

Were we blacked out? Was our story too hot for the mainstream media to handle? Perhaps,
we'll never know for sure. That said, we got plenty of coverage and heard from places like
UPI reporter Dan Olmsted, Daily Kos, and NewsMax.com, to name a few.

Fast forward to September, and the climate for listening to the parents has changed, perhaps permanently, thanks to Jenny McCarthy.

So, we ran our Ad again today, the one describing the survey results, but this time we ran
it in USA Today.

With that as background, America please meet our unvaccinated kids:

For the first time ever, we know something about them that may help our kids.

Yup, they live right down the street from you, they are 5.6% of the population, and they
have less asthma, less ADHD, and less autism than our kids seem to have. At least
according to our survey.

Do we expect you to believe us? Not really. Not if you're a member of the mainstream media or the mainstream medical establishment. But, we really hope you will look at our data. Because today, unlike the CDC, we are making all of our data public simultaneously with the release of our survey. Crunch away, and decide for yourself.

We followed a very straightforward process, so anyone can retrace our steps. We told a market research firm what we wanted to know. They designed a questionnaire they felt would get us an answer. We approved the questionnaire. They ran the survey and sent us the data, which you can now access. Decide for yourself.

Some of the numbers really jump out, particularly amongst the boys. A "Risk Ratio" is a
way to compare prevalence, so that if 10% of vax kids and 5% of unvax kids have ADHD,
the Risk Ratio is 2.0, or a 100% difference. Risk Ratios above 2.0 tend to be allowed in a
court of law to show correlation. We found many Risk Ratios well in excess of 2.0, and
some higher than 4.0, the equivalent of a 300% difference.

Decide for yourself.

Have we proved anything today? Yes and no. We've proved that unvaccinated kids are easy
to find, and that a straightforward survey yielded some disturbing results. What we haven't
done is design a study with enough scale and controls to be published in a first-tier, peer-
reviewed journal. But, we've certainly highlighted the screaming need for such a study to
happen.

So, now what?

Everyone should send an email to Dan Olmsted and thank him for his Age of Autism series
from UPI. He's the one who asked about unvaccinated kids first, and asked it loudest. He
even asked Julie Gerberding, CDC Director. He just kept on asking it until we got so tired
thinking about what an obvious question it was that we did something about it.

Our data should be scrutinized, analyzed, challenged, and debated by any and everyone in
the autism community who cares to do so. (If you want a copy of the Excel spreadsheet
with the primary data in it, email us and we will send it to you.)

Everyone and their grandmother needs to cajole their Congressperson to jump on the bandwagon and support Congresswoman Carolyn Maloney's bill to study unvaccinated children.

This incredibly brave Congresswoman from New York said in a press release in June: "What
is ultimately needed to resolve this issue one way or the other is a comprehensive national
study comparing outcomes between vaccinated and unvaccinated children. As the most
scientifically advanced country in the world, we should be jumping at the chance to conduct a comprehensive national study to resolve the questions that have been raised.

Parents deserve answers, and children deserve no less than absolutely certainty and safety."

The autism community should pull together and fund our own independent study, in addition to the Maloney bill, to gather as much data as quickly as possible. Autism Speaks, with the biggest war chest, should take this opportunity to fund or lead the funding for such a study, and help put this issue to rest once and for all. It would be a great opportunity for them to repair a badly burned bridge with many of us, and I hope they jump at the chance. The study must be run by researchers who have no history in this fight, on either side of the argument, and it must have the scale and controls
to achieve wide acceptance through journal publication.

As for me, nothing much changes. My son is getting better, and we think the road map drawn by considering him "vaccine injured" is why. Knowing cause is so incredibly important to figuring out how to help and treat our kids, and I'm grateful for the pioneers who have been demanding answers for years. My wife and I hope, in some small way, that this survey moves things forward, and creates a deafening demand from parents for more answers. Now.

J.B. Handley is co-founder of Generation Rescue.