Autism Thoughts

As many of you reading this know, I have of late been very concerned regarding the direction autism advocacy is going. I have problems with the concept of the neurodiversity movement that seems to be gaining momentum these days.

I do agree with some of what they are saying and what they are trying to accomplish. What I disagree with is the way they are going about doing this.

It seems they feel the way to get what they want is to attack those who disagree with them. This troubles me. It also troubles me that so many of them are "self diagnosed" people with autism. (My problems with this are well known, and it led them to actually put a petition against me on the web. This petition is notable not for who has signed it, but more for who has not signed it.) Any joker can stand up and say, "I am autistic. I am autistic because I said so." This is exactly what has been happening. Autism is hot these days, and, for some reason, which I simply cannot imagine even in a million years, it also seems to be somewhat desirable. If someone is jealous because someone else is autistic and they also want to be, then getting a proper autism diagnosis is absolutely the least of their problems.

It is clear to me, reading what they are saying, that they have not had the advocacy experiences I have had. They have not traveled as I have traveled. They have not toured as many institutions as I have. They have not seen as many broken lives and broken families as I have seen. They have not spoken and networked at as many conferences as I have. They have not been involved in national and international advocacy as much as I have. If any of this were true, they would immediately change the approach they are taking, not to mention a few of the views on autism they have. What they do, they do out of ignorance.

Lest you think I am boasting, I just want you reading this to know that I know exactly what they are thinking, exactly what they are feeling, and exactly what is motivating them. Because I used to feel exactly the same way they do! (Check recordings of my early conference presentations. ACK!) There was a time, believe it or not, when Jim Sinclair and I used to get together to brainstorm ideas about forming an organization ourselves. There was a time when I was going to be the one to fill out the 50(c)3 and articles of incorporation, mainly because I happened to know how to easily get my hands on the forms. That organization went on to be ANI, and at the end of the day I had very little to do with it. Instead I did five years on the ASA board. No regrets, because those five years opened my eyes to the reality of autism beyond my own experiences.

Autism affects each person in a different way. The neurodiverse seem to think the only form of autism is the one they have, and that is, of course, assuming they even have it all in the case of the many self diagnosed who have jumped on the neurodiverse bandwagon. And yes there are cases where autism can be an asset. My friend Temple's work is an excellent example of this, and she admits as much herself. But unlike many in the neurodiverse crowd, Temple and I have both seen the utter devastation this disorder can cause. So I say to the neurodiverse, if you do not want to be cured, that is your business, and, moreover, it is your right. But you do not have the right to step on the toes of those who are looking for something better. And no, I cannot say that everyone out there wants to be cured, but at the same time, you cannot tell me they do. Should a cure ever become available, it is each person's right to decide for themselves. In the case of a minor, the parent or legal guardian will have the right to decide, whether you (or I) like it or not.

There will be some ethical issues to be worked out, such as whether or not you are still entitled to SSI or SSDI or other entitlements should you decide to forego the cure. Do you have a right to continue to be a burden on society when it can be avoided, simply because you are who and what you are? Maybe you do. But maybe also you don't. Thankfully, those difficult decisions are for far greater minds than mine to decide.

One of the most important things I learned while I was doing the advocacy in the nineties is the effect grass roots advocacy has. You can work on a national level as I have to get the word out, but where I was most effective, where I did the most good, was in working to change the world not through any of those very public means, but more simply, and more quietly, one child at a time.

I have been blessed beyond measure in that I have held innocent children's shattered lives in my hands and I have been able put them back together. And even though every time I did this, it was just one child, it was just one family, it meant so much more to me than anything I ever did or could do on a national or international level. I never received recognition for it, I never got an award or a ceremony for it like I did for the more public things I have done, but still it meant more to me because I was able to see that I was making a difference.

A real difference.

In the late nineties all of that hard traveling caught up with me and I came down with a very serious illness. I had no choice but to to leave the work I so loved doing.

That was ten years ago, in 1997. Now, here in the healing Blue Ridge and the Peaks of Otter, I am beginning to feel better for the first time in over a decade. As that decade has passed, I have watched as advocacy has taken what I believe to be a wrong turn. At the same time, I know where my strengths are. Not in the national spotlight, but in the local grass roots.

So as the neurodiverse continue to make noise, I have decided to take a different approach and go back to school to learn to be a more effective and appropriate advocate for the cause of autism. My first class (see details of the class I am taking by clicking here) was last week. The first day we learned about the history of disability advocacy. It was very interesting. We learned about how things were in the beginning in ancient Greece (they threw you in the river and let the gods deal with you) and then we learned how we moved on to the institutional setting. We saw the expose Geraldo did on Willowbrook. That was a definite eye opener. Good job there, Geraldo.

We also saw a documentary on how the advocates who came before us managed to get Section 504 passed in the Senate. That was some kind of amazing viewing. What they did, that took some serious guts. And I am ever so glad they did it back then, because if they tried that today, they would have all been arrested and that would have been the end of it. I admire them greatly.

Then we moved on to the community based setting and learned about that, and how to incorporate into the community. We learned about the problems we still have and how we as a society still have a bit of a ways to go before we get to where we need to be.

The second day we learned how to make a P.A.T.H. (Planning Alternative Tomorrows with Hope), which works out a way for the disabled to have a more productive and higher quality of life. What makes the PATH different is that it is based on what the person wants and desires, not the parent or teacher or doctor or guardian. I like that. :)

Both of these things are fairly elementary, but hey, it was the first class. I sure do look forward to what else I may learn!

After graduation, I will be “Partner in Policymaking”, which is recognized in 46 of the 50 states. I will have passed national standards and I will have a little piece of paper that tells you I am qualified and able to do what I have already been doing, sometimes effectively, sometimes not, for the last 15 years or so.

I have done my time on the national and international stage. I have made a name for myself, one that is recognized. To most, it is a good name, to a few others it isn’t. What I want to do now is to use any good reputation I may have built for myself back then to get kids (and maybe a few adults) what they need to live happier, healthier, and more productive lives. I want to do this, as I said before, quietly, one child at a time, because that is where true advocacy lies.

This is how you truly make a difference.