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Does Autism Treatment Change Personality?

Posted Oct 01 2008 8:03pm
This began as a reply to Wade Rankin and Kevin Leitch’s post in the comment section of this post, but it has mutated into its own post. Kevin raises a good question that is beginning to get some discussion in the biomed community. I thought I would offer my opinions and experience and then throw it out there for discussion.

“Its an absolute nightmare scenario I agree but I don't really see how (or why) you're tying it into the desire to not 'cure'?”

The primary responsibilities of parenthood is to keep a child safe, and to teach them how to keep themselves safe when you are not longer there to care for them. I see Autism as a making the first much more difficult and a monumental obstacle to the achieving the second.

I am not so much attacking the “desire not to cure”, as using this example to defend the ‘desire to cure’.

“Kids wander away from their parents all the time, both autistic and not autistic - they do it because they're curious beings. Removing autism won't remove curiosity.”

No… but it will temper curiosity with a healthy fear of injury, so what happened to the cat may not happen to the child.

I will continue posting the stories of missing and deceased autistic children and then everyone reading can decide for themselves if the child's ASD was the factor that made them engage in the behavior that put them at risk or resulted in their death.

In this case, I have a 5 year old typical little boy and the thought of stepping out of the house in the dead of night would scare him shittless. He certainly would not get up, go out the front door and then walk for blocks.

If my typical 5 year old was separated from me at Disney, he would scream for me and look for me and it would be much easier for him to be found. Chandler (pre-biomed) would just keep walking endlessly.

FYI, Disney is a lot safer place than I thought it was. A few years back (before we had kids) we were there with another couple and were standing by that huge marble ball that is sitting on top of a high pressure water fountain so kids can spin it... you know the one? Anyhoo, this one 12 year old thought it would be funny to pee on it. Well we found out just how many plain clothes security they have in the park, because instantly the kid was surrounded and uniformed guards came around the corner about 30 seconds later.

My point being that if a child gets separated from mom at Disney World and starts screaming for mommy, there will be several security people in ear shot to scoop him up immediately. How much longer did it take the Mouse Squad to recognize the happy little Rankin was at risk when he didn't call attention to himself by recognizing that he was at risk and freaking out?

And again, I think we have different ideas of what "cure" means. To me it is that he would not longer fit the DSM IV criteria. Most specifically, and most importantly, he would be able to accurately size up his environment, act appropriately in his own best interests and advocate for himself.

Last spring we were at the park and poor Chandler was stung by a bee on his face. We were sitting on one of those kid trains, and he started whimpering for a minute but was not terribly upset. Scott assumed that he didn't like the ride. He was stung on the cheek facing away from Scott, so he could not see the big red welt.

It was not until 10 minutes later when I approached them as we were getting off the train (Web and I were in another part of the train car) that I put together what had happened. I had seen the bee earlier, Scott had not.

Now the danger part is that kids react to bee stings on their 2nd sting. What if he had developed an allergy and gets stung again, but does not call it to my attention? All the sudden my child falls into anaphylactic shock and I have no idea what the hell is happening.

Autism makes the dangers of childhood MUCH more dangerous. Come to think of it, it makes the dangers of adolescence and adulthood more dangerous as well.

“The other point of course is that the advantage of not being cured probably wouldn't occur to someone until they were in teen/adulthood and able to appreciate concepts such as determinism, self-awareness, choice etc. You wouldn't want to 'cure' someone’s gender in their childhood as that would be a choice for them as adults.”

And as far as drastically altering their personality, comparing it to as dramatic a change as someone’s gender, I don't know that "curing" them would do that. Do you know of cases where that has happened? To me it just seems to be more 'amplifying' their personality. Who they are is who they are.

The changes we have seen in Chandler have not made him different so much as they have made him 'more'. We are finding that he has talents we didn't know he had because now he uses them and even shares them with us.

Chandler's first language is math. At 2 he could not say mommy or daddy, but he could count to 10 forwards and backwards. Numbers are still his first love, but now he includes us in it, asks us to count with him, we play little number games and best of all, we can teach simple addition to him and his experience with numbers is now enhanced because he can receive what we have to teach him.

Now rather than just sitting alone and reciting numbers (he clearly has a special relationship with each digit) he is using math practically. As I was typing this he came over and began counting imaginary ice cream cones. "One Ice Cream!" he takes a lick, and offers mommy a lick, "Two Ice Cream!" and on and on. At one point the ice cream was blue.

He is still Chandler, just happier and no longer in a fog. He can communicate his wants and needs, and cope better when he doesn't get his way. He is recognizing opportunities that he never noticed before. But he is still the same kid.

I think my husband is a good example of someone who has lost ASD symptoms (not the good ones) through biomed, but retained his skills and "specialness". Whereas in his youth, his waters were so still that no one knew how deep they ran, now he is a big stand out because people know how freakin' smart and talented he is. I should write about his story.

Since the personality change question has been raised on the Evidence of Harm list by Adult Autistic that oppose a 'cure', parents have been asking one another if they know of any children loosing their special talents or personality traits as they recover. I have not heard people report that they have, but I don't read all the posts.

I think it is a great question to put out here. Do you know a child who is recovering through biomed or ABA or whatever? Have you seen him loose any special personality traits or talents?

To be completely honest, I am not open to the idea that a ‘cure’ for Autism should not be perused. Certainly it should be up to each autistic individual, or autistic child’s parents as to what treatments they want to implement.

To me this is a completely subjective discussion because bottom line, my child suffers physical illness, metal toxicity, metabolic disorder and autoimmune disorder, and I am going to treat them. Regardless of the impact on his autistic symptoms, it would be irresponsible of me to leave him be now that I know that these problems exist. In addition, if I actually had to choose between Chandler’s recognition of danger and his mathematical acumen, then bye-bye advanced calculus.

But just because my mind is pretty much made up as to the answer to this ethics question for my family does not mean that the question should not be explored. I believe in looking at things, even that we disagree with entirely, because at worst it tempers our judgment of those who disagree with us and at best it gives us wisdom on the journey that we have chosen.

This specific question is just another one in the larger medical ethics discussions, ‘just because we can cure something, does it mean that we should’? That is a discussion that I am very open to.

Ironically, both my side of the aisle and Kevin’s side contradict themselves in this ethical question. Allow me to over generalize and use the most extreme stance for illustrative purposes:

My camp says: Don’t ‘cure’ infectious diseases through vaccinating because the side effects (neurological, toxicological and immunological) are too dangerous and not worth it.

His camp says: Don’t ‘cure’ autism through biomed treatment because the side effects (mineral depletion, personality change and child’s self-esteem) are to dangerous and not worth it.

Both sides assert their right to reject and condemn the treatment they don’t like, while attacking the other group for doing the same.

At this point, in what we know it is still a subjective decision and reasonable people can disagree on whether or not to vaccinate or chelate.

So enough of my commentary, back to the question:

I think it is a great question to put out here. Do you know a child who is recovering through biomed or ABA or whatever? Have you seen him loose any special personality traits or talents?

UPDATE: Wade had expounded on my thoughts here.

You see, the point is not trying to keep our children from being lost in a theme park or on the streets of a new city. It’s to keep our children from being lost in the world!
Read the whole thing.

UPDATE: BLOGSWARM!
Ok... I don't know if three is a blog swarm, but I am gonna go ahead and call it that. Kyra at This Mom has her thoughts on the matter. Here is a sample:

I hear of this heated debate, the biomedical approach versus those who petition for greater acceptance of these children, greater awarenes of autism, greater education. And I think, what am I missing? I do accept my son as he is. I embrace him and love him and will continue to work to allow for him to grow into his potential...

...Put 100 ASD kids in the room, you’ve got 100 highly different kids. Remediate the autism, and you’ve still got 100 different kids. But maybe they can now deal with the sensory input of the scene, maybe they will feel safe, and will express themselves with the confidence and competence that is their birthright.
I love this thought:

Now that we know where the deficits lie, let’s treat them and turn down the static so we can hear what these kids are saying.

I, for one, am interested. I’m not trying to fix them. I’m trying to hear them.
Go read it.
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