Autism Thoughts

Nine years ago (2000), very soon after I moved here to the mountains, like within days, I was invited to speak at the first national political autism awareness rally.  This was held on the Mall in Washington, DC.

I remember climbing the steps to the stage, thinking about MLK and all of the so many others who have spoken there, and it was both exciting and somewhat frightening at the same time to know that as I climbed those steps, my name would be added to theirs.

There were many people there (thousands, I heard) waiting to hear me and I spoke to them.  Looking back, I can't really remember what I said, though I know I wasn't really happy with the speech.  I had written many speeches and I wasn't happy with any of them.  I decided to toss them all and just say what I felt.  I have heard rumors of a video of that talk, but I have yet to see it.

I also have a dream.  I have a dream that someday those of us with autism will be united and treated equal.  Yes, some of us need accommodation in certain areas, and when possible and reasonable, that accommodation needs to be provided.  But we also have a responsibility.  If we want to  be treated with respect, we need to do things that are respectful.  We need to contribute in some way.  Lately I have been doing this as a writer for the "Autism @Home" magazine and also writing in other places.  There isn't as much $$$ in it as I would like, but at the same time, I know that I am at least providing something.  If not for this dang skeletal/muscular disease, I could be contributing a lot more!

Some with autism are unable to contribute, this is through no fault of their own.  Some would look at them as a problem and a drain on society.  I disagree.  I have seen the worst.  I have seen the head banging, the self mutilation, the crying and the screaming, the rocking in the corner and the hand flicking for hours upon hour upon hours non stop. 

And I have learned from it.

Anyone who approaches them with eyes and hearts open can learn from them as well.

The political landscape in autism has changed dramatically since I gave that speech.  We have people with asperger's demanding to be heard.  Contrary to popular belief, I do not see this as a bad thing.  I do, however, draw the line when they attack parents. 

Some of them (not all, thankfully) believe that by attacking parents, they will get the respect they are demanding.  I would submit the opposite is true. 

I helped to draft the ASA parental options policy and I stand by it.  Whether those with autism and asperger's like it or not, the parents do have a right to seek any treatment they feel is appropriate for their children.  This (unfortunately) includes aversive therapies.  At least for now.  I know there are people working on changing that, and I wish them luck.  They are going to need it.

I have seen aversive therapies.  I have watched, horrified, as a device a child was forced to wear sprayed lemon juice in his eyes in an effort to stop a behavior. 

It was unsuccessful.

I have seen many other examples I won't go into here because I don't want to get depressed and I don't want to depress you who are reading this.

A lot of the attacking is based upon parents choosing Applied Behavioral Analysis (ABA) as a form of therapy and treatment.  Many of those with asperger's had the same thing happen to them back in the day.

But that was back in the day. 

ABA has changed and the arguing that is going on between the people with autism and the parents is happening because those with autism and asperger's cannot accept that ABA has changed and is now far more friendly and less aversive.

I know Lovaas personally.  I have done several conferences with him.  I have spoken with him.  I have not been all that impressed, though for all I know he was just having some bad days.

I was also against ABA in the beginning.  If you listen to some of my early talks (they are out there somewhere), you can hear me speak against it.  But as I continued the advocacy, I had opportunities to travel to many institutions and residental facilities and even private homes.  What I saw astounded me.  I saw that ABA was working.

It works because of the game.  But when the child gets wise to the game (usually somewhere between four and six years old), then ABA is no longer effective and it is time to move on.  If you don't, then it is possible (perhaps even probable) that the child will be playing a game with you, and you won't even know it.  You will continue thinking you are playing the game when all the time you are the one being played. 

I have seen this more than once, and it always makes me smile. 

There is a division currently between those with autism and the rest of the world.  We need to come together.  Not all of us are going to believe in the same things, and we are going to have different ideas about how to fix the problems out there (and there are indeed problems out there that need to be fixed).  But unless we can somehow become united, all of those problems will remain. 

We must realize, all of us, whether person with autism, asperger's, teacher, doctor, therapist, parent, etc., we all must come to realize that at the end of the day, we are all on the same side. 

In addition to seeing the not so pleasant things mentioned above, I have been blessed to witness a few autistic miracles.  I have seen happiness, joy, overcoming, and other amazing things.  I gave a friend of mine a CD of my friend, JoAnn McFatter, and her son began talking.  He started talking by singing along with the CD.  (And because I know someone out there will ask, the CD was Raging Beauty, and the song was Altogether Lovely, which Dillon definitely is.)

I don't know if I will see the autism community come together in my lifetime.  I want to.  There are those who are hungry for a cure and those who are very much opposed to one.  I am one of the former.  But more than that, I want to see the political landscape of autism come together into one, big, powerfully influencial being that knocks the Senate and Congress rights on their butts and gets things done. 

If change is to come, it can only come through political means.  And as long as the autism community is divided, that change will never happen.  I can pretty much guarantee that.

I have a dream to see us all as one, not as many.  All of us equal in what we want, what we demand in the name of justice and fairness and equality and rights.  I have done my time giving testimony.  But if the vision happens, if we can unite, I would gladly stand with my autistic brothers and sisters again in the House and Senate. 

Most of all, more than anything else, I want to see children with autism happy.  I want to see smiles on them instead of tears.  I want to see an end to the pain that so few people will ever understand.

As I write this, Obama is about to be sworn in as president.  There have been many interviews of late from people who truly did not believe they would see it within their lifetimes.  But they did. 

It gives me hope that within my own lifetime, I will see my dream of unity and equality and happiness for my own people. 

But it is my own people who will have to make that happen and they do not seem interested.  They seem more interested in fighting among themselves.

That makes me profoundly sad.