A Danger in Speaking
by Thomas A. McKean
This is a repost of my article on A Danger in Speaking. I didn't (and don't) want to repost it. I am doing so only because I am getting a lot of e-mail from people asking for it. Apparently they want to know what all the fuss is about? (I hope they aren't too disappointed!)
Never have I written anything as controversial as this, and this was not ever even meant to be controversial. To me it was just a note going out to people who were putting the autism conferences together. I truly had no idea what would happen when the neurodiversity read it.
Guess I should have known better. If I had known this would lead to a petition against me on the web (for something as silly and ridiculous as disagreeing with what I wrote), then I am sure I would have still sent it out, but maybe I would have worded it differently.
Too late for that now, I suppose...
I wrote this because I am very concerned about the current direction of autism advocacy. I am not boasting (rather I am speaking the truth) when I say one reason we have so many autism self-advocates now is because I helped to open the door and pave the way for them. No, I am not the only one who did this, there were four of us in the original group, and I was one of them. (The others were Temple Grandin, Sean Barron, and Donna Williams.)
Thus I have no problem with self-advocacy. I approve of it, I even started it those many years ago. However, I do have a problem with the self-diagnosed, and I will explain why.
What is happening is lately autism has become more prevalent. When I started back in the early nineties, the rate was one in twenty five thousand. Now. just a short fifteen years later, the rate has just been lowered yet again, from one in one hundred sixty six down to one in one hundred and fifty.
Autism has suddenly become news.
And what we have now are people popping out of the woodwork, standing up and claiming they have autism. How do they know they have it? Because they said so, that's how. I can stand up and claim to be a trans-gender female, that doesn't make it true.
Further, these so called "self-diagnosed" are advocating that it is wrong to look for a cure. Most of these people have never done hard time in institution or even in a special education classroom, yet they feel they can speak for those who have. Most of them have never banged their heads or done any self-injurious behavior, yet they feel they can speak for those who have. Most of them have never been unable to speak or communicate, yet they feel they can speak for those who have.
This is wrong. This is very, very wrong.
To speak out against a cure, against research, against money for research that can help these children (and adults) is criminal. To have a single-minded point of view that you know more about autism than those who have been diagnosed, who have been in the institutions, who have been in special ed classes, is beyond ignorant.
It bothers me greatly that such people could get up to a podium to speak to parents hungry for anything they can get. I understand that there are people who have been legitimately diagnosed who do not want to be cured. That is their choice, and they have every right to feel that way if they so choose. I won't get in their way of that decision because I do not have a right to.
What they (and the self-diagnosed) do not have a right to do is to say a cure is wrong for everyone out there with autism.
I have done some seriously hard advocacy traveling, and I have seen the reality of this disorder. The self-diagnosed have not seen what I have seen.
I have seen children and entire families destroyed.
I have seen utter, complete hopelessness.
I have seen glorious, impossible miracles come to pass in the most unlikely of places and circumstances.
I have seen everything in between.
I have seen innocent children screaming in pain. Neurological pain, social pain, emotional pain, physical pain, spiritual pain. They did nothing to deserve this, they did nothing to bring it on themselves. There was nothing, absolutely nothing that I or anyone else could do to take that pain away. The mothers and fathers and I could only stand there and watch these children hurting.
To say it was heart breaking would be a major understatement. Most of the time we cried right along with them.
And yet, here come people out of nowhere, people who have lived their own lives, who have not worked with anyone with autism, who have not advocated at all, rising up to say they have autism, again because they said so, most of whom have never experienced the sheer hell of the disorder, and they have the gall to say that a cure is wrong and unethical?
Yeah; I have a problem with that.
If you have autism and you don't want a cure, that's okay by me. But you have no right whatsoever to try to keep others from the option of having one if they want it. You have no right to try to keep the money from going to research that can stop the screaming of those kids I have seen and you haven't. You have no right to stop the funding of a cure that can bring broken families back together.
What is good for the goose is not always good for the gander.
You also have no rights when it comes to misleading the parents at the conferences. You cannot stand up there and say you have autism when you have never been diagnosed. You can, however, say you are self-diagnosed. That's okay. That's honest. Let each person listening decide on their own whether you are valid or not. This is the way it should be.
If you do not want to be cured, you have a right to that opinion. You even have a right in this country, praise God, to express that opinion to others, even if you are speaking at a conference. What you do not have a right to do is to claim that a cure is wrong for everyone. Until you have met everyone with autism in the world, until you have gotten to know them, you simply cannot make a blanket statement like this. I have not met every autistic in the world, but I have met hundreds and hundreds of them and I have met enough and even gotten to know enough of them well enough of them and worked with enough of them to see how badly a cure is needed in many of these cases.
Sometimes autism doesn't hurt. But some times, many times, it does. To not understand this, to not be able to see past your own nose is complete ignorance. I speak from experience. I once felt as you did. I have since seen the error of my ways. It was getting to know all those others that showed me I didn't know as much about autism as I thought I did.
My pride was humbled and I started doing what was right instead of doing what was wrong.
I am angry about these dangerous self-diagnosed people telling parents a cure is wrong. I am angry about these self-diagnosed people trying to writing to the government, trying to stop the funding for research for a cure. I am angry about these self-diagnosed people who think they know what autism is when they have never gone through what the rest of us have. I am angry when they say autism is all good and no bad. I am angry when they speak out against ABA when it has been made more humane and when there is clear, scientific evidence that it does work. I am angry when they say every person with autism is strong and proud to be autistic and has no problems and needs no cure. I get angry when they start screaming about how others do not speak for them and then they have the nerve to speak for the many with autism they have never met and do not know.
This is a legitimate anger. This is a legitimate concern. Speaking for an entire population is a very serious thing and should not be taken lightly. I know this is true because more than once I have said the wrong thing and I have had trouble for it. I have tried hard to learn from these mistakes. I have problems with someone who "says" they have autism, simply because they "feel like" they do, who have never experienced the true, dark side of the disorder, getting up there to speak for those who actually have and those who really do.
I have worked very hard over the years to move the autism cause forward. And, to some small extent, I think I may have accomplished that. Thus I have every right in the world to be angry when people who "say" they have autism come along and go out of their way to undo every good thing I have done.
That's why I wrote the article.
If you have comments or thoughts about it, good or bad, feel free to e-mail me.
Below is the actual, unedited article. And now, on with the show....
Thomas - 09/24/07
A Danger in
Thomas A. McKean, 06/15/06
I have become very concerned of late as to the direction that public speaking on autism has taken. I can remember (“back in the day”) when one of the main events in autism was what I called a “dog and pony show.” I called it that because it was the same four people, traveling around the country, doing the same presentation. I was blessed to be one of the four, the others were Temple Grandin, Diane Twachtman, and Carol Gray. And guess what? It worked.
One reason it worked, I believe, was the combination of Temple and myself. She and I are so different, so unlike each other, that between the two of us, conference attendees would get a much better and rounder view of autism than when they would when either of us would speak alone. I liked that. I felt it was good for everyone. Carol Gray’s social stories have been proven to work, and Diane always had great things to contribute, too.
So the four of us together created a synergistic team that was beneficial to all who were involved. While I have stayed away from the circuit for a while, yet I would not mind traveling with those three again. Nowadays things are different.
It seems that today anyone can make a claim they have autism and it will be believed. These people will get a slot at a conference and they will get up there and say things that are dangerous to kids with autism and their families, and the parents will take notes and eat it up.
We have young people who have no documentation of a diagnosis being accepted as autistic and who are accepted to speak at these conferences to speak on behalf of those who cannot speak for themselves.
What they are saying is that ABA is wrong, they are saying that seeking a cure is wrong, and they are saying that we need to allow the children to be themselves and to respect them for who they are.
Now I admit that I myself once held all of these beliefs. But I soon saw the error of my ways. I have seen with my own eyes the positive results of ABA on younger (key word: YOUNGER) children, I have seen the unbelievable self righteous snobbery of those who do not want a cure and soon realized that I did not want to be like them (and also saw they were wrong), and I have seen that while it is true that we do need to allow grace and latitude to a child with autism, we also must keep the reins on them if and when they pose a danger to themselves and/or others.
I have also recently heard there are people saying that we cannot trust the diagnosis of the doctors and that we should not be giving any medications to kids with autism.
I’ll be the first to admit there are a lot of doctors who don’t know anything. I can’t count the number of parents who have told me how they go to a doctor and spend time educating them on autism and then get a bill for the education.
But having said that, we must also realize that there are doctors out who do know what they are doing, and who can accurately diagnose the disorder. If you are looking for such a doctor, consult your local support group. Someone there will recommend someone they are happy with. If you find a doctor that parents like, that is the one to see.
Yes, medications can sometimes be dangerous to children, but some are dangerous to everyone. Yet sometimes it is more dangerous to not give them the medication. Would you allow you child to have recurrent seizures when there are safe medications to prevent it? It is common for children (not to mention adults) with autism to have problems sleeping. Clonidine has been shown to help immensely in this area and it is one of the safest meds out there when given appropriately. This would allow not only your child to sleep better, but the rest of the family as well.
We need to call for accountability when it comes to speaking at conferences. Who is attending? Ravenous parents who are hungry for information that will help their child. If you are claiming to have autism, let’s see some proof. I have proof and I am willing to show it to anyone who wants to see it before I speak at a conference.
And even with the proof, there are other things to consider. Where are they coming from? What was the early education like? What kind of experiences did they have when they were younger?
Another very important question to ask is what age they were diagnosed. More than one speaker currently on the circuit is “self diagnosed.” This is extremely dangerous and they should not be allowed to speak until they have documentation proving a valid diagnosis by a reputable doctor. Those with a late diagnosis are suspect as far as I am concerned, but that doesn’t mean the diagnosis is not valid in some cases.
The reason you need to be asking these questions, the reason we need to start cracking down and being harder on speakers is because these people are up there representing the children of the parents who came to hear them speak. There cannot be accurate or valid representation if they have not experienced what a lot of these kids have.
Now please don’t misunderstand me. I am not saying that you need to have Thomas A. McKean speaking at your conferences. What I am saying is that whoever you do decide to have, please be sure they are legit. If someone holds an opinion that it is wrong to cure autism or that ABA is wrong, that is okay. This is America. They are allowed to think that. But when they are promoting this opinion, it needs to be stated that way from the podium. As an opinion. To state these things as absolute fact is wrong and harmful to the autism community and should not be allowed and, further, should not be tolerated.
You who are putting these conferences together have a responsibility to the people who are paying you to attend. As such, you must be sure the parents and educators and professionals are getting true, accurate, valid information concerning autism and those afflicted.
Start doing your job.
Thomas A. McKean
Member, Autism Society of America Board of Directors, 1992-1994, 1997-2000
Author, Soon Will Come the Light: A View From Inside the Autism Puzzle
Author, Light On the Horizon: A Deeper View From Inside the Autism Puzzle