Susan's Blog

Tuesday, January 23, 2007

The Autism Blame Game

I am giving you the text to my NPR Commentary on the Lincoln-Sudbury High School tragedy. I also want to add that I am disappointed by the reaction from the Asperger’s Association of New England, who are quoted as saying in response to this that, “Physical violence is not at all typical of people with Asperger Syndrome (AS). AANE has worked with thousands of families, teachers, and other professionals for more than a decade. In that time, we have never before heard of a comparable event. We hope the public will remain open minded and open hearted, and not compound this tragedy by forming a sweeping negative stereotype about all people with AS.”

It is the first part of this statement that I have trouble with, not the rest. I think it is a little disingenuous of the AANE to claim that physical violence is not at all typical of Asperger Syndrome. I know at least two children whose behavior can cast doubt on that statement. But more to the point, what is really not helpful about this is that the AANE seems to be in effect seeking to separate themselves from those other disabled people who do have profiles of physical violence (like some people with more marked forms of autism, perhaps). The criminal defense lawyers know how to protect your rights.

Even if it were true, why set up this shaky divide? Obviously they are seeking to reassure the public, which in itself is a good thing. But what I would find far more reassuring would be a more honest stance, which would have been something more like this:

“It is true that, like most other people, sometimes people on the autism spectrum become frustrated to the point of tantrums, aggression, or other disruptive behavior. Coping with an often over-stimulated sensory make-up causes this to be an even more important issue when it comes to autism spectrum an Asperger Syndrome. We hope that the public will realize that there are many effective approaches and strategies for helping people on the spectrum handle their feelings and impulses and avoid outbursts. Employing such effective strategies is far more desirable for the diverse nation we are than taking actions that exclude and marginalize.”

— Susan Senator, Executive Director, AMI (Autism Mothers Inclusive)

And now, my Commentary:

They say that the worst thing that can happen to someone in this life is to lose a child. I think perhaps the second worst thing is for your child to have taken someone else’s life. When I heard about the stabbing of a teenager at Lincoln-Sudbury High School, I felt a chilling sorrow, because I have teenage sons. But when I heard that the suspect was a teen with Asperger’s Syndrome, a high functioning type of autism, my heart was even heavier.

Maybe this was because Nat, my oldest boy, has autism, too, though a much more severe form. He struggles constantly with his faulty neurological circuitry. I have often worried about him hurting himself or other people. And he has: teachers, classmates, family members. We have all experienced Nat’s tumultuous rages and outbursts; we all have the scars of nearly two decades of living with him.

But even so, no matter how hard it is, we can’t give up trying to get him to be a part of this world. And so Nat has come a long way from his more frightening behaviors. He has learned a lot about self control, to the point where he even has a job with Meals on Wheels.

Inclusion and independence are the biggest dreams of parents like me. Independence is Nat’s Harvard. I have always envied the higher-functioning autistic kids, the ones who are mainstreamed with typically developing children. With mainstreaming and inclusion, there is great opportunity for growth, but it is rarely easy. Parents and teachers have to find the balance between supervision and letting go.

I am afraid that the events at Lincoln-Sudbury will lead people to think that such inclusion is a dangerous thing. But the truth is, even in the most supportive environments, a tragedy can occur. Because adults miss the signs. Or because life is still unpredictable, autism or not.

Even when I feel discouraged, I can’t just surrender and hole up with him in my cozy house, away from the scary world. I suppose that is also the task ahead for Lincoln-Sudbury, for the victim’s family, and for the suspect’s family. They have to find a way out of their fear and get back to feeling safe again. We need to prevent further tragedies, but this must include being sure we don’t vilify autistic people or their struggling families.

11 comments

Very nice commentary. I need to take your advice and “not hole up in the house.” My little Sam will only be 5 in a couple weeks, but this last year has been very challenging, as his behavior has become very violent. It happens on a dime, and many times we can’t figure out why. He wants to hurt anyone and anything, including himself when he has meltdowns. He has even resorted to throwing himself down stairs. But…we can’t hole them up, we need to educate the public, and we need to continue to make them a part of this world. Thanks for your thought inspiring words, and your commentary!!!

— added by Anonymous on Wednesday, January 24, 2007 at 1:18 am

Hi, I found you through http://www.universalhub.com.

Your commentary here is great, and much-needed. It’s a bit frustrating that someone from an advocacy organization would play into the political landscape and make a statement basically disowning this child as “not one of ours.” It’s a vague statement to say that violence is “not typical” of people on the spectrum — just by mentally scanning around my caseload, I’d say that, no, extreme violence isn’t seen in the majority of people with AS, but people with AS do seem to present with more aggression than the general population. This only makes sense, given that we’re talking about folks who can become overwhelmed and short-circuit, have trouble expressing themselves, and don’t always read social norms well.

I suppose what’s even more frustrating is that we live in a political climate where this group feels pressured to make a statement that “people with autism are not bad.” I can kind of understand where they’re coming from, given that we recently had a governor who openly made speeches about how human rights don’t need to extend to GLBT folks, women, and people with mental illness. I can kind of understand the pressure to make sure that people on the spectrum stay in the category of “cute little innocent people who need our help” instead of “bunch of worthless parasites who don’t deserve basic services.” The folks who oppose services for people with disabilities often rationalize their positions by dehumanizing.

http://1smootshort.blogspot.com

— added by Anonymous on Wednesday, January 24, 2007 at 7:52 am

Thank you for that commentary. You always seem to take exactly what I’m thinking and then go on to express it much more eloquently than I could.

Patrick is only 5 but as he ages this worry for him grows in my heart. I totally agree that the second worse thing that could happen would be for him to seriously harm or kill somebody else. Then what would a parent do? Especially knowing the difference in their neurological functioning. I’m especially afraid when I see Patrick have what I call a “short circuit”.

He’s not very agressive now but….

— added by Anonymous on Wednesday, January 24, 2007 at 8:53 am

You know I agree with you on this one. We couldn’t weed out the columbine killers before they took the lives of others.There are tons of dangerous kids in schools who’s brain chemistry is different or their life at home isn’t great and they turn to violence- we don’t exclude them. I think it is always important when dealing with spectrum children and adults to look at what is motivating the behavior and what the feeling behind it is. I believe this is also important for menatlly ill people as well. Our children need inclusion because they need peer role models to model ideal behavior and coping stradigies. They need a “normal” setting whene thier behavioral therapy (or whathave you ) can be administered.
There is no denying that autism creates a differnt looking and functioning brain. This difference accounts for the huge processing issues and nuerological inconsistancies that manifest as agressive and unpredictable behaviors. I agree we must fight to the death to make people understand that these are not dangerous people but people with dangerous brains. Let them now that they need to be patient as we attempt to rewire the brain and its cognition while curbing unfavorable behaviors with reinforcement of good behviors.

Once again Susan , people can say what they want but you are at the heart of he issue with a knowledge and perspective that others do not have.! well done!

— added by Kristen on Wednesday, January 24, 2007 at 9:33 am

I looked at the AANE page to which you linked, and I didn’t see any evidence of divisive intent whatsoever. To the contrary, the page states that AANE advocates for people with AS and related conditions (which presumably refers to autism).

Blame Where It Doesn’t Belong is my response to your post.

— added by abfh on Wednesday, January 24, 2007 at 12:00 pm

I’m positive AANE did not mean to be divisive; in fact, I think AANE’s statement as a whole is very good, which is what I said. However, I do have a problem with the thrust of their argument being that Asperger’s is non-violent. Maybe it is non-violent by and large, but that should not be their point. Because they should be advocates for people on the spectrum EVEN IF they exhibit aggressive behavior. It IS very often part of the profile with autism, and maybe that’s anecdotal, but you should see the volume of emails I get from parents telling me about the aggression they are dealing with. I don’t think it does any good to use Asperger’s or autism as the defense for what happened, but I also don’t think it does any good to say, “by the way, we’re not violent.” That is NOT the point. The point is, and should always be, don’t blame all the people with autism spectrum for what happened in Lincoln-Sudburn.

— added by Susan Senator on Wednesday, January 24, 2007 at 12:49 pm

I’ll believe you, Susan, as soon as you start routinely describing bullies and other people who are violent towards autistics as having part of the “violent profile of neurotypicality” or having “violence as part of their profile” and other clinicalized language to describe the ordinary everyday constant violence in the world (most of which is not done by autistics). Until then, I’ll assume you’re acting on bias.

— added by ballastexistenz on Wednesday, January 24, 2007 at 1:41 pm

Haven’t I described NT bullies in this blog? I’m sure I have. Haven’t I described such things, by deploring what happened to William Lash and those other poor children at the hands of NT parents?

I apologize for offending you and those with AS. But I still remain disappointed with the slant that AANE has taken with this. It seems cowardly and not emphasizing the right point, which is that this boy had such pain and such problems that were not being addressed, and he committed a terrible act because of it.

— added by Susan Senator on Wednesday, January 24, 2007 at 1:57 pm

Not to mention all those delusional parents who torture there kids in the name of bogus intervention,

The perverts of the Judge Rotenburg Centre, with there warped personalities.

The trigger happy cops and restraint fetishists who will shoot first or if that fails sit on you till you suffocate

The amoral DAN Drs who poison kids in the name of making a profit.

Who are the real violent ones?

I have a little list, they’ll none of them be missed.

— added by The author on Wednesday, January 24, 2007 at 2:59 pm

Dear Susan,
Beautiful commentary and post. It is so well written and heartfelt. I applaud your bravery and advocacy. Sincerely, Enna Id

— added by Anonymous on Wednesday, January 24, 2007 at 3:48 pm

Susan

Before we make the oily statement that AS folks are inclined to violence and that there are many strategies to deal with their problems, we had better be darn sure that there is some evidence for this. The problem with having a label is that everything that person does is seen as a product of that label. Fortunately there is statistical evidence that AS folks are not more violent than anyone else and it comes from Professor Simon Baron Cohen and his CLASS data.

I don’t know how many people you’ve managed to mislead with your anecdotal misinformation on this, but it’s your responsibility to right it.

I have seen just how far some careerists are willing to distort things so that they can offer ‘strategies’ for dealing with this violence problem. The usual gambit is to compare this population to some impossible norm, quite forgetting that violence is as common as dirt in the general population, kids, adults ,men women – everybody at some point or other. One researcher, anxious to be able to say that AS are violent resorted to the device of counting a single episode of shoving at any point in the relationship as evidence of domestic violence. She got a rate of 40%. I wondered why it wasn’t 100% because that is what I’d expect of the general population.

I find the argument that AANE is abandoning this member of their community – distancing – to be utterly specious. They are quite correctly protecting their community from yet another unsupported stereotype by protesting that the Asperger gambit is a reasonable legal defence. What else would you expect a responsible advocacy organisation to do? They’re not Autism Speaks, ASA or Autism Canada, thank God.

— added by Alyric on Wednesday, January 24, 2007 at 9:27 pm

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