Tuesday, December 2, 2008

Twelve minutes

Twelve minutes. That was how long I had to describe the life of a woman with Asperger syndrome, the details of how AS is diagnosed, how it is (or isn’t) different from autism, why boys are diagnosed so much more often than girls. Twelve minutes for what might be the only chance some of these listeners, the nine other people in my class, ever have to hear a perspective like mine. I knew it wasn’t going to be enough.

As regular readers of this blog know, as anyone who’s ever had a conversation with me knows, I am not a fast talker. Even with multiple rehearsals and a well written plan, the stalling of words is all but inevitable. That’s why I tend to follow up class presentations and other important talks with the written words that flow more easily here. That’s why I’m writing this post now, instead of the many other pieces of writing that I have committed to doing. Because of the things I didn’t get to say.

To the nine other members of my class, this may hold little importance. I know that. But I will have failed in a fundamental way if I don’t at least try to correct some possible misconceptions. I want you to know that an autism diagnosis isn’t a disaster or a “bomb.” It isn’t a tragedy to be autistic. I tried to make that clear through the “case” I presented and the small piece of my own history tacked on at the end.

There is no hard and fast line separating AS from autism. When I was young, I hardly talked at all. By young I mean…until about 30. This was always seen as volitional, but it wasn’t. Having the physical ability to produce speech is not the only prerequisite to using spoken language. When asked a question, I would often say nothing. This wasn’t “shyness.” It was an absence of words to describe what I knew. The thoughts were not available in that format. Sometimes this is still true for me. It is less noticeable. The more years a person lives, the more strategies she finds. I’ve heard that this is also true for non-autistic people.

There is no hard and fast line separating AS from autism. Many people do not agree with this statement. Some of them have let me know this, and not always in the kindest of ways. “People like you”…I’ve been addressed that way more than once…”People like you have it easy and don’t care about the lower functioning.” The people saying this have never met me. There is the assumption on some parts that if you can write and drive and attend college, you should not call yourself “autistic.” That autistic is something else. A tragedy. Something that takes a terrible toll.


Something that “takes a terrible toll.” Please read this link. As much as it saddens and sickens me that this man took his son’s life, this article, the way it is written, this infuriates me beyond belief. It’s not an isolated incident, this killing. This sort of writing isn’t either. Somehow, autism is made out to be the villain. No. A man killed his son. “I had to,” he said. What was so terrible? Look at the article’s first two paragraphs:

Jacob Grabe, 13, could sense a storm coming several days out. He would get agitated and make strange noises. Silverware bothered him. He could eat only from plastic forks and spoons. He breezed through complicated algebra but struggled with basic division.

Nearly three months ago, when his father, Allen, allegedly shot and killed him while he was sleeping, Jacob had been exhibiting these and many other symptoms of the mysterious disorder autism for most of his short life
Later we hear this: "Autism is a maddening disorder of scrambled brain development that can lead some parents to snap, experts say.” Who are these experts who use terms like “scrambled” to describe a differently developing human brain? Who sanctions this "snapping?" I want to know. I want this to stop, this unconscionable victim blaming. Throughout history, people have offered many poor reasons for killing. This is among the weakest arguments I’ve heard for murdering a child. But for a so-called journalist to endorse such garbage by focusing on the cost and the stress associated with autism, this is beyond the pale.

“So Jacob became another statistic in a sad, pressure-cooker reality for families with autistic children.” No. He became a victim of murder. But because he was autistic, that’s not how the story is told. He deserved better, and so does his memory.


He could only eat with plastic forks and spoons. I can’t wear silk or polyester or be in the same room with styrofoam. Earlier, a reader sent an email asking me to write about Jacob. I thought I couldn’t do it. I was too angry, too sad, too ready to give up. Having the physical ability to write is not always the only prerequisite to using language. Sometimes I make strange noises, too.
If I had twelve hours to explain, it wouldn’t be enough. There is no hard and fast line. Jacob Grabe’s diagnosis was Asperger syndrome. So many others have died for no reason. Autism isn’t a tragedy, but catastrophic thinking can open the door to such unthinkable events. There is more, so much more to say but this...today, this was most important.
Note: Minor stylistic edits have been made to this post.


  1. Beautiful, moving post, Bev. Thanks so much for all you do and are.

  2. I feel truly disconnected from those parents in that story. As usual, the story centered on the parents and not the child. I can't imagine chatting at a table, drinking a latte, and saying to others that I could sympathize with that father and his actions. What is wrong with people? Then, you go down and read the comments and you read what is becoming much more frequent than it was a few years ago (i.e. people writing that "these" kids shouldn't be mainstreamed).

    I write this as my son wakes up, walks into the room, gets on my lap and buries his head into my neck. A ritual every morning to wipe away sleepy eyes.

    I can't imagine sympathizing with that father, sorry.


  3. Bev, thanks for doing your part to show the witch hunt for what it is. I hope the reporter will one day realize what she said and feel deeply ashamed of herself. Ditto the editor who saw nothing wrong with that story.

  4. The "story" in that link was truly disgusting. Seems like the bulk of it was meant to justify murder.

    "Oh, they're so troublesome! Their therapy is so expensive! They can't do this, or that, what are they really worth anyway? You can't blame this poor man for killing his son, all these other people did it too, and if you were in their shoes, so would you."

    The entire story was slanted to vindicate that man and justify his murdering his son. Why?

  5. I can't believe that Denver Post story... how offensive *and* judgmental. I'm seriously tempted to write a letter to the editor.

  6. And I just noticed something else: Somehow, the comments to the Denver Post article ended up becoming a debate over taxpayer funding for services for the disabled.

    Talk about Completely Missing The Point.

    Seriously, I just don't get neurotypicals sometimes.

  7. I keep thinking about what the father said: "I had to kill him because you were ruining him". The mother was involved with a support group, and the father was autistic. I think the mother wanted a nice normal child and the father didn't like her methods.

  8. While I can see both sides, the parents (separate) anguish and the child's pain... I see no reason for the termination of a life.

    The sad fact is that this sort of thing happens a lot more than you'd expect - and not just for reasons of autism.

    The modern family just doesn't seem to have the same "fall-back" structure that the families of yesteryear had.

    It's all very well to expect the parents and teachers to monitor the child - but who monitors the parents. Nobody's perfect and we all go a little crazy sometimes (usually not quite that crazy though.. and as I said before, it doesn't justify the outcome). It's just a pity that in this day and age, there's no grandparents, aunts & uncles, second and third generation cousins etc around to keep families working together.

  9. "A pathologist in Pekin, Ill., suffocated her 3-year-old daughter by placing a trash bag over her head. In court, asked whether she realized she was murdering her child, she answered, "No." Asked whom she thought she was killing, she answered, "Autism.""

    This line in the article you linked broke my heart. This was a little girl. A little girl died, was killed, because her own mother didn't know how to see her any more. I just don't have words for this. Only tears.

  10. This article you linked to is the nastiest piece of hateful trash, especially the last sentence, sounds like parents just "have to" do this to free themselves.
    ...and the list, as if this would justify this.
    Bizarre, how they mentioned all the quackery like chelation, as if anyone has to spend money on that, and then blaming Autism...
    The whole thing is just so horrible.
    Thanks for finding some beautiful words, now the boy has at least an obituary.
    That's the saddest part, to get insulted even after being murdered.

    Sorry for the incoherent comment, I'm completely at loss for words.

  11. ...I couldn't get this out of my head, and decided to write a letter to that woman, even if I'm going to struggle with words, it just needs to be done.

  12. Terribly sad. I can't imagine. I don't get what people are thinking.

    Thanks for sharing this.

  13. This comment has been removed by the author.

  14. Simply tragic story in this post.....very important for others to hear about these kinds of instances.

    Also, I too address the female to male ratio as it pertains to AS during most of my speaking engagements. This is definately an important subject which needs ongogoing research as it will render data by which a clearer understanding of Aspergers as a whole will bring to light the facts of Neurodiversity.

  15. I don't believe it's possible to deliberately kill another person if you really see them as a person (except, possibly, in self-defence and even then I'm not so sure).

    One day that father will come to understand what he has done. I feel truly sorry for him because of that, but that poor kid must get the lion's shatre of the sympathy (yet the article chooses to sympathise with the murderer). I can't imagine a stupider reason for killing anyone -let alone a child.

    He was murdered because he couldn't do certain things. Because he seemed weird. Because he caused some people inconvenience some of the time. Because he wasn't exactly the child his parents wanted. Because he couldn't understand some things. Because he was frightened by things which other people found completely non-threatening.

    If those were valid reasons for murder, we'd all be dead. Every last one of us. (And by "we" I mean the entire human race.)

  16. Thanks for posting this Bev. It's important.

    sanabituranima said..."I don't believe it's possible to deliberately kill another person if you really see them as a person (except, possibly, in self-defense and even then I'm not so sure)."

    I agree with that. I don't think that it's human nature to deliberately kill other humans.

    Something happens either before or after people murder. Humanity is lost. They don't see humanness in themselves or others.

    The issues that are misunderstood about how autistic people relate to their environment and how people misinterpret the ways we deal with them begin with fictitious and overly standardized ways that relating is defined as "normal".

    From there, for expediency and convenience, what people don't understand can too easily become what they ignore and/or react to without contemplating the consequences.

    Behavior views too often judge different behavior so critically that human aspects that aren't readily understood by the viewer as just humanness they aren't accustomed to relating to can lead to the the most violent of inhuman acts.

    I think the one who wrote that article is expressing a loose grip on humanity themself and that attitude needs to be exposed for how inappropriate it is and what kinds of really bad consequences can come from others adopting such views (which is what I saw in you do very well in your post)

  17. Codeman 38 wrote:
    "And I just noticed something else: Somehow, the comments to the Denver Post article ended up becoming a debate over taxpayer funding for services for the disabled.

    Talk about Completely Missing The Point."

    No, Mr. Codeman, unfortunately THAT is the point. I am not- ever- for nmurder of people with disabilities (or without...). If someone can not manage, they should give the child up for adoption/foster care. BUT PARENTS DO DO DO DO NEED SUPPORT. Therapies need to be provided. And oh, isn't it so much easier (and cheaper) to say that the victum is at fault, rather than paying for the support needed?

  18. That "father" is a lousy excuse of a human. He would have been better to take his own life and spare his wonderful child.
    I have two sons with Asperger's. I can't even imagine ever thinking that they derserved to die or that that needed to be "freed" from their diagnosis.

  19. That article... What the FUCK?

    I can't say anything coherent.

    What the fuck?

    Murdered children? Anybody remembering the murdered children?

    Nope. Those poor parents, being forced to murder their children!

    logical... disconnect...

  20. I don't have words 😞

    Dear Bev, thank you for your written eloquence and your community service


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