Monday, August 16, 2010

Blaming Autism

Last week, I opined when talking about current events that autism is a casual factor in some deaths and that children with autism have more safety issues than "typical" children do.  These posts got a little bit of a response.

On the bright side, Harold Doherty from Facing Autism in New Brunswick agreed with me in that there are dangers inherent in having autism and Ginger Taylor from Adventures In Autism defended her site "Lives Lost to Autism" (the site that started the debate) by pointing out that research has actually shown that people with autism have an elevated death rate.

On the not so bright side, Astrid took my statements out to the woodshed not once, but twice while someone named Laura from Life in the House That Asperger Built brought out Spock to crush my illogical opinions.  They both has several problems with the idea that autism is culpable in some peoples deaths but, before I go into the details, I wanted to clear up a few basic misconceptions about what I wrote.

First, when I talk about "autism", I am talking about the conditions commonly known as autism as they are defined in the relevant medical manuals.  I am not, however, always talking about people who have autism.  These are two different concepts.  As I have said in the past, a person is a person, not a disability.

Second, if a person causes, either through direction action or negligence, the death of another person then they are responsible for the death.  Or, to put it simply, they are to blame.

Third, just because a person does cause another person to die does not mean that there weren't other factors involved. I do not think that most events are ever simple enough to only have one cause and just because one thing is "to blame" does not means that something else is not equally "to blame".  When you are talking about death, there is always more than enough blame to go around.

With that out of the way, I think the criticisms are as follows.  If I get these wrong, feel free to tell me where I am mistaken.

Laura said that it isn't the disability that kills children but rather neglect on the part of their caregivers.  If their caregivers had properly taken care of them, they would not have died.

While I agree in general, as I said above and elsewhere, that if a person shows actual neglect that they are responsible for the death, I have to strongly disagree with tone and implications.  As I talked about earlier, parents and caregivers often go to extraordinary lengths to protect their children but it only takes one moment of inattentiveness or one moment when your focus is elsewhere for a tragedy to happen.

I think it is long past the point where we should be automatically point the finger at the parents.  We didn't cause our children to have autism nor did our poor parenting skills and we are trying our damndest to help them, so enough with the guilt trips already.

Second, and probably more importantly, even when there is actual negligence, that does not mean that autism did not play a role in the death.  Let me be clear, that does not excuse the negligence - in my mind it actually makes it worse.  But it is important to acknowledge the fact that autism comes with additional risks.  I will expand as to why this is the case in a little bit.

Astrid pointed out that it isn't the disability that leads to problem but rather unsafe situations while Laura said that the lack of abilities that is part of autism can only lead to death in the presence of other circumstances.

On one level, I agree with what they are saying.  If you are standing in the middle of room doing absolutely nothing, a person with autism is no more likely to die than any other person would be.  The problem only comes in when you have things happening in the environment that interact with autism.

And that is exactly why part of blame belongs to autism.  Autism impairs a person's ability to understand their environment, both on a social level and on a physical level.  It is that impairment - an impairment that is part of the core of what autism is - combined with the environment that causes the problem.  If you removed the impairment, the situation might not be unsafe.

That does not mean that you ignore the situation or just shrug your shoulders and say "well, that's autism".  On the contrary, parents and caregivers need to be very aware of exactly what situations would pose a danger to their child and actively work to keep the child from harm.  But that extra step of precaution is not possible without first acknowledging the fact that autism is creating an extra risk.

An apt example here would be if someone drugged you and then left you wander out onto a busy highway where you were hit and killed by a car.  Is the car the only think to blame in your death or is the person that removed your ability to understand what you were doing also to blame?

A more appropriate example would be the children than wander away from home only to die from exposure.  Is it the weather that killed them or the lack of understanding of the environment caused by autism?  Or are you really going to always blame the parents for not keeping the kids safe (i.e. you should have put that fourth lock on the door)?

Perhaps an even more appropriate example would be the twelve year old boy with autism who was rescued from a fire only to break free from his rescuers and run straight back into the fire where he died.

It isn't always that situations are inherently unsafe but rather that situations are unsafe because of autism.

Astrid and Laura both said that autism is not an excuse for a parent murdering their child.

I agree completely, and said as much not too long ago.

Finally, Astrid said that blaming autism shifts the focus away from the concept of safety to the disability itself.  The focus should be on providing accommodations to make the world a safer place for people with the disability.

I think she is missing the point.  It is critical that parents and caretakers understand the increased risks that come along with a child having a diagnosis of autism.  If you don't understand that the child might not be able to properly understand their environment and may engage in behaviors that are not in their best interest, you will not be able to adequately keep them safe.

To make matters worse, you may not get a second, so sticking your head in the sand and pretending that the problem does not exist is only going to lead to more dangerous situations, not less.

It seems to me that critics like Laura and Astrid would rather pretend that autism doesn't carry greater risks while at the same time blaming the parents and caregivers for not providing better protection.  They can't have it both ways.

I think the overall problem with both critics is that they seem to feel that the condition known as autism is a part of their identity and they view any attack on it as an attack on them.  I don't really want to go into that whole debate now, so suffice it to say that if you choose to make a medical condition a part of your identity, you cannot complain when people accurately describe the condition.


  1. First, as a person on the Spectrum, married to someone on the Spectrum, raising two kids on the Spectrum, no one needs to explain to me that being on the Spectrum carries greater risks. When my son, at age 6, wandered out of school un-noticed, I knew it was because of his ASD that he wandered, but I blamed the school and his teacher for him being able to LEAVE THE SCHOOL BUILDING without anyone noticing. Yep, I blamed the school that was supposed to be keeping him safe. You bet your ass I did. I put my son in their trust and care and THEY dropped the ball.

    Second, it would appear, based on what you've written here, that we don't disagree on much, but one would need a clear head to see that.

    Third, I never felt attacked by you or anyone else. I simply disagree with you that Autism "pulls the trigger". That's all.


    Laura from Life in the House That Asperger Built.

  2. So you agree that autism increases risk but simply disagree on my choice of words?

    OK, whatever analogy you want to use, would you agree that the autism creates the conditions for a problem but that a later failure allows that situation to be exploited?

    And how do you think that differs from my original analogy? How can you escape the fact that autism (the condition) shares some of the blame for events in which it is part of the causal chain?

    And how on earth does a disagreement over an analogy earn me a smack down over illogic from a talking picture of Spock?

  3. Ok.. that last question made me smile. :-) Upon reflection, perhaps I could have been more measured in my response.

    To address the other questions I'll put it this way. Autism is the bullet! :-)

    Yes, the bullet does damage. Yes, the bullet gets exploited leading to said damage.

    But, IMHO, Autism doesn't pull the trigger.

  4. I agree with what Laura says, and I agree to a large extent with wha tyou said in your post on autism and safety. I am aware of the increased mortality rate in autistics - I read the entire study that fund this -, and I think this is something to be aware of. Where we disagree, is that you consider a risk factor something to "blame", rather than something to take into account and to accommodate for. Autism is no more to blame for accidents than blindness is to blame for accidents. IN both conditions, there is an increased risk (I haven't researched it on blindness, but there could be), but that still means that we need audible traffic signals for the blind and supervision and other safety measures for autistics. I don't care who makes these recommendations. The fact that it is a medical doctor, does not mean he is medicalizing risk: he is simply giving advice on how to deal with a disability. It would be medicalizing risk if the doctor said "Your child is autistic, that's why he might die in an accident." It would aslo be medicalizing if anyone else said that thing.