Hi Eri -

It is possible to concurrently possess competency and not possess an ability to prevent oneself from engaging in behaviors that are typically considered to be harmful or dangerous.

I don't think you get it. I can ask my son, 'which one is the number 2', and he nails it. What I cannot do, ever, is ask him, 'show me the number that is more than two'. He can react to one request, but not the other, no matter how many trials he gets. We can do one after the other:

"Show me the nubmer 5"
He does.

"Show me the number bigger than 5"
He does not. He knows he's supposed to do something, so he just picks something, but never with succsess rates higher than chance.

It isn't an inability to prevent him from acting; it is not understanding the concept of the word 'bigger'. How many times do you really think he would successfully complete the first request, but fail to complete the second request given immediately thereafter if he understood both requests? He gets frustrated during ABA if he doens't get his chips/sticker/movie/whatever when he has to try to repeat tasks; he wants to answer the questions, he makes guesses, but he doesn't understand the question being asked of him. It is plain as day; especially when you have seen with your own eyes the consistent, one hundred percent failure rate at understanding any abstract concepts; he literally has dozens of opportunities a day, every single day, and has failed every single one of them. How can I not take that into consideration?

Your argument further troubles me as, much like most others like it, it assumes that the autistic self-advocates you communicate with online are verbal (in the typical sense) and so-called "high functioning".

Well, I guess it depends on what 'high functioning' or 'non-competent' means. In your case, you seem to have the idea that competency is related solely towards the ability to understand communication, but doens't have anything to do with being able to live independently, hold a job, or dress or bath oneself.

A countless number recount their parents and families speaking as if they could not understand, having made the assumption that their assigned level of functioning automatically correlated with competency.

Countless? Really?

I also cannot help but ask: what do you have to lose by assuming competence?

Nothing, but narrowness by which you have defined 'competence' in this instance makes it a meaningless question.

If I were to assume competence, assume that my son understood complicated language along the lines of 'burden', would you suggest I tell him to microwave his own dinner with the caveat that he not put a fork in the microwave? He knows how to start the microwave up, trust me on that one, so maybe I should just assume that he won't blow it out by putting utensils in there. "Only microwave that for a minute, Luke!"

Or maybe I should assume that he is competent to understand what I mean when I say, 'watch your brother while I clean the bathroom', and assume that he understands what that entails?

Should I tell him to walk to the bus stop on his own, assuming he understands what I say when I tell him not to get in cars driven by strangers? You would never, never ask me to assume that level of competence, would you?

Of course, if I did any of those things, I would probably have child protection agencies called on me, or at the least, would be replacing a lot of microwaves. My presumption of competence on his part, absent any evidence other than someone telling me about 'countless' instances where someone understood bad things being said about them, would count for squat. Nature is a cruel, cruel mistress and cares not for pendantic distinctions wherein someone is 'competent' to understand the concept of a 'burden', but fails to understand 'which number is bigger than 5?' Some of us have bigger worries about our children.

That is likely why the people in the audience shook their heads, and why I think this is the wrong battle to be fighting. I'm not here to argue that people should call their children a burden, but rather, that there are many instances where the parent is right; their child does not understand them, or anyone else, and the idea that our biggest concern should be our children's understanding of concepts like 'burden' is akin to re-arranging desk chairs on the Titanic, except in this case, we are being told to perform the furniture acrobatics by people safely on land while we are knee deep in freezing water.

- pD

Do they truly disagree with this statement?

YES

It's difficult to know why any of the particular parents in that room might disagree with this statement, but for me, the concept of 'presuming competence' strikes me as someone who doesn't have the first clue goddamned clue about my child telling me that they understand his capabilities better than someone who has been by his side every day for the past nine years. The basis for this assumption is their sharing of the increasingly broad and meaningless label of 'autism' and something someone wrote on the Internet.

'Presuming competence' brings a lot more to the table for some of us who have watched our children struggle, because it also means that our children are choosing to suffer, choosing to be frustrated, intentionally ignoring his parents advice that something is dangerous.

The idea of a parent 'missing' a suite of competence ignores the reality that every single day their child has dozens, or hundreds of opportunities during which they could demonstrate competence in understanding concepts like 'burden' or 'cure', yet, they fail to do so, at every opportunity. My son has been getting between 15 to 25 hours of ABA per week, every week, for six years; he is working on reading words like 'cat'.

He knows that succeeding will get him a reward that he wants very badly, and yet, he continues to struggle with 'cat' versus 'dog'. The potato chips, the trip to the trampoline, or five minutes of 'Cars' is just a few successful trials away, and yet, he continues to struggle with 'cat'. Why on Earth would he do this if he understands the idea of a 'curse', or what 'cancer' is?

My son loves the homestarrunner.com website [great site for everyone!]. He's figured out that if he opens a browser and types, 'h' it will autocomplete, but has not figured out that he cannot type 'hhhhhhhhh', which is where I usually find the browser. I'm not very worried about him navigating the Internet and telling you, or anyone, anything, about any mean (or great) things I've said; I weep for that day to arrive.

For six months my son insisted on touching the rear bumper of every SUV in a parking lot, running from me to complete his task. I told him, again and again, that it was dangerous, that he could get killed, yet he persisted. Perhaps you could tell me why I should presume that he understood I was warning him of literally deadly danger, but continued to ignore my words and screams? Why would he do this?

If my son were competent at understanding language to the extent you claim, why can't he point to the correct pile if I ask him which one has 'more'?

My son can do none of those things, and it is pointed out to me with great clarity dozens of times a day that he lacks the ability to understand abstract concepts in writing, speech, interpretative dance, or any other communicative method.

So that is why they are shaking their heads; their autism experience is different than yours. Different. Your assertion is offensive to some of us; the fact that you understand the Internet, the concepts of punctuation, of being offended, of streamed Internet videos of Congressional hearings, while having the same label as our children is meaningless to us. It does not speak towards our experience, does not speak towards the challenges our children face. It is really pretty simple, but you have to be willing to accept that other people have different flavors of autism than you do, and your capacities, or the capacities of some random people on the Internet are not generalizable to everyone with the increasingly broad label of autism.

- pD

Hi Emily -

Nice posting.

I didn't read this review when it came out, but right about the same time two other salient papers came out, Mitochondrial Dysfunction in Autism, which also claimed to find ~ 10% prevelance of classically defined mitochondrial disorder, and Brain region-specific deficit in mitochondrial electron transport chain complexes in children with autism which found evidence of electron chain problems in the CNS of the autism cohort, but curiously, only in the children.

One thing I didn't see here, but did see a little of in the skimming of the review, and in the two papers above was the common areas between mitochondrial function and oxidative stress. Both of the papers above show associations with oxidative stress levels; the authors think there is likely a participatory role and / or the opportunity for feedback loops within this intersection.

- pD