October 22, 2005

Does Autism Treatment Change Personality?

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.

12 comments:

Linda H. said...

Hi Ginger,

My 3 year old's connection to us 'typicals' used to be through music. He was obsessed with the piano since we purchased the first toy one around 15 months. He's been taking music lessons from a music therapist, and she's been impressed with his aptitude. He can match pitch with his voice and can hear key changes in music. I don't exactly know what that means or even if it's that impressive for a 3 year old, but I consider music to be his special talent. As his receptive and expressive language has improved, (through ST, DT, verbal behavior, omega-3 sup., and glutathione) his interest in the piano has dimensioned a good degree. Before, an explosion could go off and it would not take his attention away from the piano. Now (at his lesson) if someone should walk into the room, he'll stop playing and take interest in that person. Sometimes it's hard to get his attention back to the piano. It's possible he might lose interest in the lessons entirely. For me this is no big deal. I was never interested in him being a musical genius. I just wanted him to have a source of joy and an improvement in his quality of life. Now he is finding joy through other sources and that's fine by me. Music is still his 'thing'. It's still what calms him if he's had a really bad day, but it's not the only thing in his life anymore. I can't imagine anyone that had seen his life before would ever say it was a mistake to give him therapy and biomeds. Perhaps parents that don't want to make personality changes, don't have a child that is so severely dysfunctional.

Kristina Chew said...

Yes, we parents do ABA, biomedical, "interventions" to help our children be more than they can be. As Wade might say, we often get caught in the semantics--I don't think anyone would object to helping a child with headache-inducing stomach aches. I think my son's personality has been pretty much the same throughout--just we see and hear more of him expressing it.

Wade Rankin said...

You speak for a lot of us, Ginger. Thanks.

Mom to Mr. Handsome said...

Hey Ginger,

Gabe started ABA 8 weeks ago and is now able to communicate with us. He no longer shakes the cupboard doors screaming and crying for something we have no idea what he wants. He now smiles at us and says cereal, chips, milk when he is hungry. What a blessing it is to us to hear and understand our son. Gabe is Gabe and we love all of him. I cherish his way of thinking and little quirks, they're beautiful. Why would I want to change that? ABA has just brought more of his personality to the service. He used to just stare at the TV, now he dances around to Maisey and Tahlula. Not because WE want him to, but because we gave him the resources to be able to. Education is a tool for everyone.

Tamar said...

It's an interesting question. My own answer: we started floortime and SI work with Damian in the spring of 2001. (We don't do biomed or ABA so I can't comment on those.) I loved my son and felt I knew his personality, but he was afraid of so much and unable to communicate with us, unable to enjoy other kids (was terrified of them)... he had so many barriers to being fully comfortable in the world.

I've never thought of it as a cure. We're not trying to stamp out all signs of autism; he'll always have some sensory quirks, so what? We're simply helping him become more whole and, frankly, more wholly himself. I look at him now and I see the two year old he was, definitely. He's the same kid, with the same love of music, the same sense of humor, and even the same love of certain sensory textures. He's just more integrated and present, more able to enjoy his friends and more able to understand the world around him. He's more himself, that potential self we saw back then.

Anonymous said...

thank you, Ginger! for your posts. ever fascinating, thoughtful and respectful! i so appreciate your approach, your willingness to get and keep the discussion open. i guess i DO want to hear about it becuase i'm always coming to your site!

our son's personality hasn't changed but he has become more engaged, more interactive, more relaxed, and more, what i would call, himself, since we began 'treatment'.

kyra said...

ooops! anonymous was me! forgot to include my name!

Jackie M. said...

This is a great post. Your question at the bottom struck home to me. This summer we heard the wonderful news that my son no longer could be considered Autistic. The one thing that I noticed was he no longer had that amazing ability to spell any word after hearing or seeing it once. For example, at 2 1/2 a friend's father was over our house while the boys were playing. I have a magnetic board with letters. My son picked up the letters and started to spell his son's name, which was a very long name. The man's jaw almost hit the floor. His son (same age) could only identify one letter in the alphabet and my son could spell about 20-30 words including his son's 8-letter name. He no longer has that amazing ability. He can spell but not only after seeing a word or hearing the letters once.

Personally, I'll trade the supper human spelling for a child that can tell me what he wants, what is wrong, how he feels, and what he did that day.

Jackie

Anonymous said...

My experience has been that my son has become less savant-like with
nutritional supplement therapy and Pivotal Response Training. This time last
year, he was constantly adding numbers and into spelling big-time (He was 4
then). Today, he is very interested in play-dates and has become aware of
friendships the other kids have. His personality has changed to become more
social, more engaged, less inwardly focused. He is also more willful - which I
view as a good thing.
Angela

Kev said...

I can't remember if I used the word 'personality' or not and I'm playing catch-up on this whole thing so I'll just go with what I have.

Personality is only one aspect of the change that would be induced by a cure. I cannot imagine how my child wouldn't be different if she was 'cured'.

As you know, I don't like chelation. It really genuinely worries me. I also have spoken with and formed a very high regard for lots of adult autistics. These two facts orbit my thinking on my opinion on a cure.

Firstly chelation - or more accuraltey most things other than it. I don't have an issue with much else - it seems pretty safe. I don't believe it has much effect, but neither do I believe its dangerous in the same way chelation is. I've said in my blog before that its not up to me to tell people what they should and shouldn't do - I leave that to the JB Handleys and John Best Juniors of this world. I speak out against chelation and against a sole mercury causation but thats about it.

Simply put: I don't think any of these things can possibly cure autism. if I thought they could I might be more vociferous in my opinions.

Secondly is, as I say, the high regard that I have to have for adult autistics whos autism has quite clearly enhanced their lives and even where it isn't you'll find a love of being who they are. It may well be that if the'd been 'cured' 10 years ago they wouldn't know the difference but that wouldn't make it right.

I find it very difficult to see how we as non-autistics can believe we know best what an autistic might want. The fact that we are their parents indicated a truer level of relationship - as parents we have lots of obligations but does that include the right to remove what is, like it or not, a core part of who our kids are?

That said I freely admit that:


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.

If you believe autism is/is causing illness and that part of treating that illness impacts on the autism then health must come first.

Thanks for conducting this debate on such non-aggressive grounds.

Ginger said...

Kev said...

As you know, I don't like chelation. It really genuinely worries me.

Fair enough.

Please indulge my probing questions so I can narrow this down. I want to understand what exactly worries you about chelation. Autistic children not dx with metal poisoning being chelated, or any autistic child being chelated? Off label use of chelators like IV ETDA, FDA approved like oral DMSA for lead, or any chelator including natural ones like l-glutathione and ALA?

What if the child is being supplemented and tested regularly to make sure minerals are in balance?

I speak out against chelation and against a sole mercury causation but that’s about it.

While some may think that mercury plus nothing equals autism, I just came from a DAN! conference and heard people like Bradstreet talk, and over three days I did not hear anyone put forth that message. Mercury was always discussed in the context of a TRIGGER for autism, for which many of the metabolic problems needed for the disorder are already threatening to take place, one among many toxins that can set the process in motion. (See DAN Blogging post http://adventuresinautism.blogspot.com/2005/10/dan-blogging.html)

Simply put: I don't think any of these things can possibly cure autism. if I thought they could I might be more vociferous in my opinions.

Again for clarification, then if they did work to cure autism, you would speak out against them more loudly? Meaning you truly believe that autism should not be cured even if the metabolic breakdown is completely defined and we know exactly what the problem is?

Secondly is, as I say, the high regard that I have to have for adult autistics whos autism has quite clearly enhanced their lives and even where it isn't you'll find a love of being who they are.

Good, great, as it should be!

It may well be that if he'd been 'cured' 10 years ago they wouldn't know the difference but that wouldn't make it right.

Wouldn't make it wrong either.

I find it very difficult to see how we as non-autistics can believe we know best what an autistic might want.

Depends if they are adults, teens, minors or our own children. I would never presume to tell an adult with autism what treatment decisions they should make, at the other end of the continuum, I feel very comfortable making decisions for my sons that will dramatically influence the outcome of their lives.

The fact that we are their parents indicated a truer level of relationship - as parents we have lots of obligations but does that include the right to remove what is, like it or not, a core part of who our kids are?

My answer to that is yes. I have to make a judgment call, are the upsides of autism worth the downsides for my son? I don't think that they are because they put him at risk. I believe that safety trumps pretty much everything.

In addition, the treatments that we are doing with him are all measures that make him more healthy. Chelation to rid his body of mercury and lead; vitamins and minerals that he does not seem to get enough of; really healthy organic food while with holding food that he is allergic to; probiotics, digestive enzymes and nystatin to make his digestive track work properly.

Here is my big question: If these measures, that are to make his body more healthy, end up changing his personality and/or cognition, then was his 'autism' ever truly a "core part of who he is"?

Thanks for conducting this debate on such non-aggressive grounds.

Is there any other way??? ;)

Ginger said...

So I have wrapped up all my thoughts on this debate in this post:

http://adventuresinautism.blogspot.com/2005/11/safety-v-personality-change.html