Autism Thoughts

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):
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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.
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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.