Sunday, October 23, 2005

WHY

There’s an inane stereotype some people hold about those of us who use biomedical interventions to combat our children’s autism. According to that stereotype, we are all desperate parents who can’t face the fact that our genetic makeup will prevent our children from living up to the aspirations we have for them, and so we are willing to risk their health and well-being by resorting to dangerous treatments. The only part of that description that might fit is the word “desperate.”

Yes, I’m desperate. I’m desperate to help my son achieve a measure of independence. I’m desperate to prevent my son growing up to be seen as a victim. I’m desperate to see my son grow up with no barriers to hold him back. In other words, I’m a normal parent.

For awhile, I was getting wary of even mentioning the word “cure,” mainly because it seems to mean something different things to different people. I tried to explain my concept of a cure for autism, and hopefully I can use the word again and it can be understood that I am not trying to alter the laws of nature. So, why do we feel it necessary to resort to what some think of as experimental medicine to cure our children?

Ginger, over at Adventures in Autism, has addressed the “why” question in a couple of recent posts. First, in "How Autism Threatens Children's Lives," she passed on a recent news item about a young autistic boy who was found walking down the street in a town to which his family just moved. My immediate reaction was to recall the most terrifying 10 minutes of my life. We were in DisneyWorld not quite two years ago, and my son managed to elope from the stroller without our noticing his absence. The story had a happy ending; between a wonderfully trained staff and a big assist from the most potent child-finding force in the world, the volunteer “mommy brigade,” we soon had our son back in our arms. But at the time, “soon” seemed like an eternity.

My son could not tell anyone who he was, who his parents were, or even that he was lost. A mother who heard us describing our boy to the security staff walked up a hundred yards or so, saw him standing off to the side, and found the nearest employee (oops, sorry Mickey, I mean “cast member”). Had that happened anywhere other than DisneyWorld, would we have had our happy ending?

Ginger’s post drew a comment from Kevin, a blogger from the “other side” with whom I have developed a mutual respect and something of a friendship despite strong differences in opinion. Kev didn’t see how a lost child is related to a parent’s desire to “cure” the child’s autism. Specifically, Kev, the parent of an autistic child questioned the right to make a decision to cure:
… if our daughter came home to us in her teens and said on balance she wanted to be “cured” then I would move heaven and earth to make that happen. What we all do, we do for our kids right? But who are we to make such a drasticaly altering choice as “curing” their autism when they can have no appreciation of the way it would alter the core of who they were as people?

Ginger’s response was nothing short of perfect:
Who are we? We are their parents.

Making choices that will impact who our children will become is the blessing and burden of parenthood. We have to make HUGE choices for our children and we don’t get to find out the final impact and totality of those choices until their lives and personalities completely unfold.

We are flying with blinders on, with the only view in the rear view mirror and out the side windows, and we can only make the best choices we can make with that information. Every time we make a choice for our children, we unchoose every other possibility for them.

Ginger expanded on the subject with a post entitled "Does Autism Treatment Change Personality," in which she explained:
… I think we have different ideas of what “cure” means. To me it is that he [Ginger’s son, Chandler] would no 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.

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!

In addressing the usual criticism of seeking a cure -- that we’re robbing our children of that which makes them unique -- Ginger again hit the nail on the head:
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.

I certainly recommend reading the entire post.

My wife and I remain committed to using whatever means seem appropriate to help reverse the dysfunctional characteristics we see in our son. That doesn’t mean that we don’t have bad days. But we often have the kind of day that opens our eyes to see the progress our son has made.

The other day I was talking to a good friend of ours who now lives in Texas, having lost the family home in New Orleans to Katrina. It has been a few months since I last saw her son, and I couldn’t believe what I was hearing in the background of the conversation. A six-year old child who just a few short months ago was struggling to put words together, was now stringing multiple sentences together in real conversations. He now shows interest in other people, and most especially, the feelings of other people. What made the difference? His biomedical treatment progressed to the point where chelation was added to the mix, and metals are being removed from his tissues.

That young man and my son have a long way to go before we can say they have reached maximum improvement. But we see improvement that seems to be related to particular changes in protocols. Yes, it would be nice to wait for the science to be all in place so we could know exactly what will work and what won’t. Autism, however, is a complex problem, and learning the solutions will take a long time. It may be that we will never learn one solution, because the impact on each child is so different. Perhaps the exact combination of genetic and environmental factors that leads to autism in each child is different.

We do what we can. As part of a responsible decision-making process, we weigh the potential benefits of any treatment against the known risks. And it doesn’t take much risk to outweigh uncertain benefits. Our friend in Texas put it this way: “I would rather have my wonderful boy the way he was than to put him in harm’s way.”

That statement shows the biggest fallacy in the stereotyped view so many hold of us. They think we’re only concerned with the destruction of our own self-image and our own dreams. Those who think of us in that way can’t see into our hearts. If they could, they would see that our response was, is, and ever shall be about the kids. I believe that those parents who reject biomedical interventions have the same motivations, the same fears, and the same love for their children. Their decisions may be right for their children; I am in no position to judge anyone but me.

Yes, we all do what we can. None of us, regardless of how we view and respond to our children’s ASD, know any other way to raise our kids. We’re parents.

13 Comments:

Blogger Wade Rankin said...

After posting this, I saw that Kyra over at This Mom also addressed this subject. Read her post entitled "Watching the Clock."

10/23/05, 11:28 AM  
Blogger Kristina Chew said...

Sometimes, if not all too often, it seems to me that any intervention we parents try to that smacks of anything a bit more aggressive than going along with the protocals of special ed and psychology raises eyebrows. We used to be heavily into biomedical interventions for Charlie and--while still maintaining him on a special diet and some supplements--have made his education our main focus. (Once I saw we have a Lovaas program, I get those raised eyebrow looks, and offer the same rationale as you do for why seek out experimental medicine. We all have to do everything we have to do, if we're going to be able to sleep (a little) at night.

10/23/05, 12:38 PM  
Anonymous Anonymous said...

Just an aside:

Somwhere along the way in "autismland" the term biomedical came to be equated with chelation. A defintion of the actual term follows:

Biomedical (relating to the activities and applications of science to clinical medicine).

Although we use a medical, immune-mediated approach for the tx. of ASD co-morbidities, I can no longer use the term "biomedical" without most assuming this must include chelation.

BTW, chelating agents do have immunomodulatory affects on some pts.

Each family must decide for themselves which is the best treament path for their own child. There is not just one mode of treatment -- even from a medical perspective.

10/23/05, 7:39 PM  
Blogger Eileen said...

Although we have not really ventured in to the whole biomedical approach for Andrew yet, we do follow a diet and are trying to control a yeast issue with him currently. I do believe that their is more we can do for him biomedically, but I want to take things slow. When he was first diagnosed we took him to a nutritionist that put him on many supplements...most likely too many because we saw an extreme increase in hyperactivity. I am sure we all have the same fears, motivations and extreme love for our kids. We are all acting out of love for our children and wanting them to function in this world in a safe way. I can completely relate to the fear of losing him in a public place or something horrible happening to him because he can not communicate and understand his boundaries. I have frequent nightmares of losing Andrew in a public place, calling his name and him not answering. This is a skill we have tried to teach him, but he still does not respond to his name all the time. I can relate to "both sides" of the "autism world". I respect and understand parents who are seeking biomedical intervention for their children and I can understand where the individual with Autism who wishes to be respected for the way they are is coming from too. None of us are in a position to judge another person for the decisions they make for their loved ones... their children. I wish the best for all of us in this journey to help our children reach their full potential.

10/23/05, 9:11 PM  
Anonymous Michelle Dawson said...

Autism has nothing to do with personality, any more than gender or sexual orientation or handedness do. That doesn't mean that parental interventions against the gender, orientation, or handedness of their offspring--for whatever reason--are just fine.

And "biomedical" treatments are by definition ineffective until proven otherwise. But what does "effective" mean?

"Effective" has always meant "how well does the autistic resemble a non-autistic"? This can also mean "how many typical skills does the autistic acquire" or "how well is the autistic meeting typical developmental milestones".

But successful autistic adults are not typical-seeming. Many of us lack very basic (for a non-autistic) skills and developed in entirely the wrong order.

I still learn very poorly or not at all in ways that typical people learn well. But I learn extremely well how autistics learn well.

It would be really unfair of me if I insisted that only my way of learning (which is pretty much the opposite of ABA) is okay, and that Wade and Ginger et al have to learn what I learn, how I learn, why I learn, etc. And if they don't, then they're sick.

And labeling their inability to do what I do easily as "sickness" makes it unlikely that I'll ever find out who they really are or what they're good at. I'm too busy seeing them as a collection of pathologies and trying as hard as I can to make them "healthy", just like me.

This whole non-argument arises from a lack of understanding of what autism is, of how autistic brains are different, and of what this means with respect to cognition (perception, attention, memory, intelligence, and learning). Notice this has nothing to do with personality.

Both behaviourists and mercury/autism types have, as a group, no interest whatsoever (this is from reading the science, as well as more popular stuff) in autistic cognition. Nor are they interested in us doing well as autistics--they aren't informed enough to know what this means.

I've written a lot about Dr Lovaas and colleagues' published problems with autistic strengths (which do not look like typical strengths--they often look like "inappropriate" or "maladaptive" or "inadequate" behaviours, according to behaviour analysts), and how these strengths were denied and gotten rid of.

So long as you are not interested in autistic cognition--in autistic minds, at a much more basic level than personality--the argument is factless and meaningless. You don't know what you're messing with. And you don't know, or care about, what we as autistics have to lose.

Stuff to read about cognition, learning, Lovaas, ABA, and autism:

http://www.sentex.net/~nexus23/naa_sen.html
http://www.sentex.net/~nexus23/naa_aba.html
http://www.sentex.net/~nexus23/naa_vic.html
http://www.ls.wisc.edu/L&STODAYv9no2/
L&STODAYv9n2p4.pdf

10/24/05, 12:02 AM  
Blogger Wade Rankin said...

Michelle,

I'm not sure that the impairment in social reciprocity that makes up part of the diagnosis for autism can be labeled a cognitive or behavioral problem, but the same question Ginger poses for personality can be put forth for cognitive gifts. Has anyone known of a case in which an intervention -- be it biomedical or behavioral -- diminished the cognitive gifts in an autistic child? That's a difficult question, but I certainly don't think we'll find anyone say they were diminished by an intervention. Again, we are targeting dysfuntion. If that dysfuntion is preventing gifts from being used, I don't see a negative to the intervention.

10/24/05, 5:43 AM  
Anonymous Michelle Dawson said...

Many credible autism researchers reject "social deficit first" accounts of autism, and yes this science gets funded and published.

If you were familiar with autism science (versus "treatments" to fix autism and make autistics look normal) you would know this.

And if you read the links I provided (uh, social reciprocity? including considering another person's viewpoint?), you would know that yes, it is possible to harm autistics, including by denying and extinguishing autistic abilities and essential characteristics, just like it is possible to harm other people. For example, see Dr Lovaas' other early ABA/IBI program, the Feminine Boy Project. He and his colleagues certainly claimed they were only getting rid of dysfunction there too.

I have no idea what you would consider to be autistic strengths, but I am totally sure you would look at me and my behaviours and you would see only weaknesses and deficits and dysfunction.

But it is exactly these odd, "inappropriate" behaviours that are entangled with my strengths--the strengths that allow me to contribute to society as a researcher.

Autistics can do things non-autistics can't, and vice versa. Your behaviour looks pretty maladaptive to me, but I won't try to remediate you through intensive behavioural or biomedical treatment just because your kind of behaviour would be dysfunctional for a person with my kind of neurology.

If you don't inform yourself about what autism is, why autistics are different, etc, how can you know what behaviours are adaptive or maladaptive, or functional or dysfunctional, with respect to these differences you are ignorant of? And I could have sworn I referred you to articles which address these issues, and that I mentioned learning, perception, attention, memory, and intelligence.

Here's another article you can ignore http://www.sentex.net/~nexus23/naa_wro.html

But there isn't anything I can tell you, or the (genuine) science can tell you, unless you are interested in autistic people, in autistic cognition, and why we are not like you at all, and why this is not wrong or dysfunctional.

10/24/05, 11:53 AM  
Blogger Wade Rankin said...

Michelle,

I certainly did not mean to offend you by responding to your comment before reviewing your citations. Time is a little tight for me these days, and my intention was merely to keep the discussion going. If the references you listed are as enlightening as you indicate, they would certainly make a good subject for another post.

Parenthetically, I must note that I have previously read your latest citation, the argument you would have made to the Auton Court. Although I would certainly argue the necessity of intervening in that case, since the precise legal issue (as I understand it; please correct me if I am mistaken) was not whether autistic children in Canada must have ABA, but rather whether it would be treated as other medical treatments for purposes of government-sponsored reimbursement. That disagreement aside, I agree with much of what you wrote therein regarding the lack of understanding of the nature of autism.

Rwgarding your latest comment to this post, I’m more than prepared to accept that some autistic individuals have particular gifts; the contact I have had with a number of adults with Asperger’s is sufficient to convince me of that. The question becomes whether those gifts are so “entangled” with the deficits that one cannot alleviate the dysfunction of the latter without also diminishing the former. If the gifts are the product of the same genetic picture that predisposes our children to ASD, I am not sure how any interventions can change deprive the individual of those gifts. Again, if any of the citations you have given bear on that issue, I will gladly discuss them.

10/24/05, 1:52 PM  
Anonymous Michelle Dawson said...

I suggest you read the trial and appeal court decisions in Auton, as well as the Charter, to get an idea of why I intervened--if this isn't clear from the application to intervene, the factum, and the other article I wrote afterwards.

I'm astounded that you, too, believe autistics had no place in Auton, and that all issues having to do with the nature, human rights, treatment, and future of autistics should properly be determined by competing factions of non-autistics, both of which agreed (and continue to agree) that it would be better if autistics didn't exist at all.

I realize you're busy, but I've never understood the priorities of "autism advocates". For example, parents know the DAN protocols (or ABA programs, or RDI, or whatever) off by heart, but don't know anything about the autistic perception they are trying to kill off. And, another example, you've taken the effort to know Paul Offit inside and out--and he has nothing to do with autism. But either you don't know anything about why autistics are different, or if you do, you're hiding it well.

I'm reluctant to repeat what I've already written here, or what I've written in the links I provided (one of the links is not my writing). I kinda feel sorry for you though, Mr Rankin. Autistics are pretty interesting, and not as the arbitrarily-stuck-together agglomerations of occasional "gifts" and those obvious "dysfunctions" that you seem to believe in.

I provided examples (with references) of autistic strengths being stamped out in the links I provided, and refer to this problem in the article you read ( http://www.sentex.net/~nexus23/naa_wro.html ). I hate using excerpts, but here's one,

"These abilities, which involve basic processes like perception, may, when they are allowed expression, result in extraordinary achievements in learning and innovation, and in beauty and insight. It is necessary to repeat that all autistic people contain these abilities. But in the world which has represented itself in this Court today, these abilities are more likely to be greeted with horror than with awe when they are expressed in an autistic child. The very signs that an autistic child is learning like an autistic are now known, through public education efforts by many of the organizations here today, as symptoms that something is terribly wrong. Now every effort must be taken to fix these appalling and useless aberrations."

10/24/05, 6:12 PM  
Blogger Wade Rankin said...

My only point about the Auton case -- and I will gladly admit that you are more familiar with it than I -- is that the issue was not about holding a gun to anyone's head to force unwilling individuals to undergo ABA. Rather, it was about who should bear the cost of the therapy. The decision as to whether ABA is an appropriate intervention belongs with the parents acting on behalf of the individual child.

That being said, what I do agree with you on is that the courts seemed to made sweeping generalizations about autism that may not be terribly accurate in individual cases. Whether correcting misstatements that do not have an appreciable impact on the ultimate decision is worth the time and expense of an intervention is not for me to judge.

As time permits, I will review all of the links you gave. I hope they will lead to a new post, and we can continue the dialog.

As for my priorities, they are with my child. Through him and through the autistic children of friends; through discussions with doctors and other parents; and through respectful dialog with adults diagnosed with autism or Asperger's (who I agree can be a pretty interesting lot), I continue to learn about about what autism is. And I certainly have no desire to "kill off" anything or anybody. I would hope that my prior posts would show that.

10/24/05, 7:24 PM  
Anonymous Michelle Dawson said...

This is what I wrote about your position re Auton (and I also disagree that any autistics at all are the write-offs described by both parties in Auton),

"While the Respondents want me to believe that their legal position, if upheld, will have no effect on me, or on any autistics who do not believe we are less than half-living, they are being fundamentally dishonest. I respectfully submit that their position has an effect on every autistic in Canada, and on autistics elsewhere. This has been true from the outset, ever since the Respondents started insisting that autism is a catastrophic disorder or illness. They have pathologized autistic traits and abilities and all who possess these traits and abilities have been pathologized. The differences which are central to our identity and integrity have been equated with cancer and AIDS. Our core medical need has been described as a treatment which will rid us of our cancerous identity and our sick and disordered integrity."

and

"I respectfully submit that autistics are seen as so much less than human that whatever is decided in public policy about us is assumed to have no effect on us. Our emotions, our daily lives under this public policy, our engagement and interest in our own fate, all are written off."

Re killing things off, you don't (you have written) want your son to be diagnosable as autistic after your "intervention".

By defintion, this means killing off autistic cognition (perception, attention, memory, learning, intelligence). A person with autistic cognition will meet DSMIV autism criteria (AS people almost invariable meet DSMIV autism criteria--long story). That is a very science-based position; if it were not true, many large research groups would be out of business.

I meet all the DSMIV criteria except maybe one. You sure would want to make sure a person as "dysfunctional" as me would be fixed. Fixing me means killing off stuff I'm good at, and replacing this with stuff I'm lousy at. No thanks, Mr Rankin.

10/24/05, 8:22 PM  
Blogger Anne said...

Wade, I think a good example for you might be perseveration -- defined in the criteria as "restricted repetitive and stereotyped patterns of behavior, interests, and activities." It is treated as a dysfunction, with a couple of reasons usually being given: it "interferes with learning" and it bugs other people, especially when the special interest is one that is not widely shared. Interventions are deployed to discourage perseveration.

Yet maybe perseveration is part of autistic cognition. Maybe autistic kids learn better by engaging in perseverative activities than by learning to suppress their desire to do them. Learning driven by intense interest is much different (I would say better) than learning driven by forced compliance.

Possibly Michelle Dawson furnishes a good example of somebody who has been able to develop deep knowledge in her areas of interest, to the exclusion of almost everything else according to her. Maybe she would be more fun at a cocktail party if she didn't do this, but I like her the way she is.

10/27/05, 3:18 PM  
Anonymous Michelle Dawson said...

I don't even know what a cocktail party is.

10/27/05, 6:50 PM  

Post a Comment

Links to this post:

Create a Link

<< Home