Yesterday the interview (published on Huffington Post, click ‘here‘) with Henry, the 13-year old non-speaking Autistic boy, son, brother, friend, student and all around amazing kid who has been denied enrollment to the public school across the street from his house went viral. At the moment it has 152 comments and over 1,000 people have “liked” it, with almost 400 people sharing it on Facebook. The comments began pouring in yesterday afternoon. A few were particularly troubling for a couple of reasons. The first being that a completely uninformed person(s) made broad sweeping generalizations about autism while bolstering their opinions with statements like this: ”and then there are the non verbal Autistic who need constant care. One can’t tell if they understand language, but they can’t speak for some reason. I do know this as a fact from the Autistic that I’ve worked with in my youth.” Another commenter suggested, “Maybe he should consider speaking …..If he wants to go to that school so badly…” And yet another said something about how Autistic kids “drag” the rest of the students down. All of these comments were uninformed, but the thing that was actually frightening was when another commenter then referred to the first commenter as an “expert”.
So I lost it. Completely. Utterly. Lost. It. Heart racing, hands shaking, head pounding, throat constricted, feeling nauseous, lost it… Which is how many who are marginalized and live with prejudice, feel all the time. That feeling of terror that their lives are threatened and in real danger as a result of incredible ignorance. I should have walked away. I should have done some breathing exercises. I should have meditated. But I didn’t. Instead I reached out with words and hit back. I used words to hurt. I used words to wound. I didn’t ask questions. I didn’t wait for more information. And here’s the thing, I don’t know that I was wrong to do so. I feel ambivalent. I feel I should regret my actions more than I do.
I responded with this: “…the degree to which you misunderstand Autism is actually more than frightening, it is terrifying. That you also worked with this population says more about the tragic state of the place you worked and their hiring policies, not to mention their training, which appears to be none, than your profound ignorance.” To which he responded, “I wasn’t hired to do anything. The camp/school had normal and special kids and they had that one Autistic boy. I was nine. I wasn’t hired.”
People in the comment thread were describing a man as an “expert” who claimed knowledge of autism because he met an Autistic boy when he was nine years old. At camp. Nine. And I thought of Joe Scarborough and his comment about the Aurora shooter. I thought of Simon Baron-Cohen who actually is something of an “expert” and yet I completely disagree with his conclusions. I thought of all the doctors, researchers, neurologists and “autism specialists” I’ve met, spoken with and consulted over the years, many of whom I do not agree with and some whom I do. But the point is, so much of this is up for grabs. There is a great deal of information out there that all of us have access to, but how do we know what is correct? We’ve got doctors drawing conclusions that seem illogical and even irresponsible, while others whom we might agree with. There are some very smart people out there working hard, publishing their work, making informed opinions, but how do we know who to believe?
I don’t. What I do know is that anyone I read or hear I try (usually) to find out more about. Who is this person? What are their credentials? What is their hands on experience? And I get a second opinion from those who are autistic. There are a number of people, all Autistic whom I particularly respect (this is by no means a comprehensive list and in no particular order, just thinking off the top of my head; please feel free to share anyone else I may have forgotten) Judy Endow, Lynne Soraya, Emily Willingham, Elizabeth J. Grace and Michelle Dawson.
A commenter on this blog wrote a hilarious comment about “Dr. Mom”, “Nurse Mom” and “Psych Mom”. It was not only very funny, it was relevant to all of this. Who do we believe? Hopefully not the guy who states they “know this for a fact” as compelling as the man might be for some. And I’ll just add this; don’t believe me either. I’m a mom. I’m a writer. I’m an artist. I have opinions. Sometimes I have really strong opinions, opinions that I think are right. But I also know that over the years as I learn more, I no longer agree with many of the opinions I held a year ago, two years ago, three years ago. My opinions change. All I know is that I want to keep learning. I want and try to keep my mind open. Sometimes it’s really hard. Sometimes I feel tremendous rage. I don’t learn when I’m that angry. But hopefully I calm down enough that I can go back to learning.
Let the learning continue!