Thursday, October 27, 2005

WHY, PART 2: A POSTSCRIPT

One of the reasons I write this blog is to hear challenges that make me reconsider an opinion. I maintain that nothing is worth believing in if it cannot withstand questioning. After writing “Why,” I found myself in a lively dialog with Michelle Dawson who left comments to the post. She invited me to review some materials, which I did. Although those materials, impressive as they are, do not convince me that my wife and I are wrong in responding to our son’s ASD with a biomedical intervention, the process has made me think a lot more about the decision-making process.

My post was part of an unplanned "blog swarm" that Ginger, Kyra, and I had addressing the propriety of our decisions to attempt “curing” our children. Ginger posed the question of whether an intervention may not only reduce the adverse impact of autism, but also change the child’s personality. Ms. Dawson feels that the question is irrelevant:
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.
. . .

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.

My response to Ms. Dawson was to restate Ginger’s question by asking if an intervention -- be it biomedical or behavioral -- ever diminished the cognitive gifts in an autistic child. I then arrogantly provided a presumptive answer that I “certainly don't think we'll find anyone say they were diminished by an intervention.” After thinking about it some more, I am not so sure about the impact. But I am still sure of the decision my wife and I made.

Autism is a complex thing that defies any real understanding. Mental health professionals define autism, Aspergers, and PDD-NOS by a constellation of deficits, a construct that may be too simplistic. As a definitional tool, however, the DSM-IV-TR criteria are probably more accurate -- and are certainly more widely accepted -- than the proposition that autism is nothing more than a different way of thinking, in essence a genetic state of being.

In a comment to my last post, Anne made this point:

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.


Ms. Dawson and Anne focus on cognitive differences, and they may be correct in saying that is a part of autism. But the clinical definitions of autism are not based on cognitive differences, but primarily by social deficits.

The parents who practice biomedical interventions, and I am certainly in that number, look upon autism spectrum disorders in primarily negative terms. Members of the neurodiversity community tend to look upon it in a more positive, or at least neutral, light. Perhaps we all are right, and we all are wrong.

My friend on the other side of the argument (and other side of the ocean), Kevin, likes to say we are doing nothing but treating comorbidities. Perhaps he is right, but many of us have seen enough to believe that treating those comorbidities seems to reduce the severity of the deficits by which our children have been diagnosed as being autistic. If those deficits are completely remitted, can we really call them comorbidities? Frankly, I don’t care what we call them. The more serious question asks whether positive traits, or “gifts,” or so entwined with the same processes that create the deficits that they can be lost as well.

When one looks at Dr. Temple Grandin, one sees an extraordinary example of how autism may shape a person’s thinking in a positive manner, resulting in a real benefit to society. Indeed, Dr. Grandin has contributed to bodies of knowledge in multiple fields, and the mental processes leading to those contributions may, at least to some extent, be attributed to her autism. There’s no way to know if Dr. Grandin would have retained those gifts had she undergone comprehensive biomedical or behavioral interventions as a child. But we must consider the very real possibility that those gifts would have disappeared.

On the other hand, Ginger recently posted the story of an adult on the spectrum who is missing, and may be in harm’s way, due in no small part to his autism. No doubt that gentleman has positive gifts, but he is unable to communicate that to those around him.

The fact is not all autistic children grow up to be high functioning. But neither are all autistic children destined for a lifetime marked by significant impairment. The problem is nobody can tell us at an early age which of our children will grow up to be a Temple Grandin, a Kathleen Seidel, or a Michelle Dawson.

As parents we have to weigh the potential benefits of any intervention against the known risks. As part of that weighing, we must also consider the fact that we might take something positive away from our children, and we must decide if the good we hope to achieve outweighs the gifts we may be taking away from our children.

Ginger received a couple of very interesting comments in response to her initial question.

Jackie M. said:
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 at 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 super human spelling for a child that can tell me what he wants, what is wrong, how he feels, and what he did that day.

And Angela wrote:
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.

I try to avoid discussing specifics of my son’s ASD on this site, but I will say this. He is at an age at which we have a pretty good idea of his strengths and his deficits. And we have a very strong belief that there is far more to be gained by a successful intervention than there is to be lost.

One of the more aggravating criticisms often directed at us is that we desperately seek a cure not for our children’s autism but really for our own shattered dreams. Nonsense! As the father of two older, neurotypical kids, I can confidently state that I gave up on having my children live out my dreams a long time ago. I simply want all of my children to live out their own dreams. But I still must confess that I have one dream about my young son. In my dream, he has reached the rebellious stage of adolescence. He angrily confronts me, and he demands to know how he could possibly be the offspring of someone so thoughtless as to deprive him of an integral part of his personality. Why, my son asks rhetorically, did I ever think it necessary to “cure” him; did I consider him “defective?” Without waiting for a response, my son storms out of the house the house and walks outside to his waiting friends, to whom he complains about how I just don’t understand him the way his friends do. If my son would only look to the front window of the house, he would see me peeking out from behind the curtain, listening to him interacting with his friends. And he would see me grinning from ear to ear.

15 Comments:

Anonymous Michelle Dawson said...

A few comments, Mr Rankin.

The DSMIV criteria are not "autism". They are visible behaviours which are used to identify people with the neurological difference called autism. And diagnosis by DSMIV criteria is not an acceptable standard in high-quality cognitive studies. Here the standard is ADOS and ADI-R, in addition to DSMIV. ADOS and ADI-R are standardized quantified diagnostic instruments. Autism cannot be diagnosed solely on the basis of apparent "social deficits".

Differences in cognition that are not social-material specific have consequences for apparent social functioning. A person who perceives differently (perception encompasses the most basic cognitive processes) behaves differently towards both social and non-social information.

Autism doesn't "defy real understanding". There is actual science. There are consistent and replicated results. You may not read this science because you are busy reading about how to fix us, but that doesn't mean this science doesn't exist.

Kathleen Seidel is non-autistic. But it's good to include her. No parent ever knows how his/her children will turn out, whatever diagnosis is or isn't involved. What you can guarantee is that groups about whom false information is widely disseminated will do poorly regardless of their abilities. And I'm exactly the kind of autistic that the parents you quote (and you yourself) want desperately and at all costs to prevent.

One way to guarantee that all autistics are unsafe is to spread the false information that we cannot communicate. All autistics communicate. And having speech does not at all solve the real problem of basic autistic needs (which are different from typical needs) being mocked, ignored, denied, considered ridiculous or outlandish, etc. How we communicate is different (not absent), but more important, what we communicate is different. The way to keep us safe is to know how and why we're different, and to help us be successful autistics. But we will never be safe so long as important people spread false and pejorative information about us.

I disagree with Kev about "co-morbidities".

Finally, a relevant excerpt from a book chapter I was commissioned to write http://www.sentex.net/~nexus23/naa_bto.html :

"I need to be told why Asperger’s people and autistics are judged the way ballerinas would be if you looked only at their feet. You would see deformity, pain, ugliness. You would refuse to consider the strength, determination, and beauty that resulted in those feet. The feet must be like non-ballerina feet! And so the treatment begins. Every increment of improvement in the feet is recorded and praised. The strength, determination, and beauty of the ballerina, always having been considered useless and worthless, are neither missed nor mourned as they are corrected into extinction. Can you explain why it is that we who are autistic or Asperger are judged this way? Because I need to be told."

10/28/05, 2:54 AM  
Blogger Kev said...

How the heck did I miss all this?

It seems I have some reading to do. Anyone who can send me the links to all the posts I've missed would find me greatly appreciative.

I don't want to respond to anything until I've read what everyones said so far as I'm sure I'll just repeat what others have said.

Please send me links to: kevleitch@NOSPAMgmail.com removing 'NOSPAM' of course.

10/28/05, 3:49 AM  
Blogger Kev said...

OK, I'm catching up I think. No need for anyone to send me links now :o)

Just for clarification - I'm not saying you can seperate comorbidity from autism, more that a comorbidity (such as a gastric issue for example) cannot be used to diagnose or define autism in the same way as meeting the various diagnostic criteria can - if you remove constipation you do not remove autism. I entirely agree with Michelle that autism is more than just the 'deficits' that comrpise the DSM. Such luminaries as Baron-Cohen and Tony Attwood have expressed their belief (I'll try and find links) that autisitc thinking ads to the human condition.

Wade said:

...but many of us have seen enough to believe that treating those comorbidities seems to reduce the severity of the deficits by which our children have been diagnosed as being autistic. If those deficits are completely remitted, can we really call them comorbidities? Frankly, I don’t care what we call them

Two issues here. First - I fully accept that some comorbidities might seem to enhance what is already there - for example, someone who is in gastric pain doesn't feel much like talking. If they're autisitically non-verbal too then removing the gastric pain may lead to more successful bouts of speech therapy. I can't imagine anyone having an issue with this.

Secondly, you say 'frankly I don't care what we call them' and that to me goes right to the heart of the differences between the two communities - aside from the appallingly childish name calling shown by the likes of John Best Jr - it really does matter what you call them.

It really matters that Generation Rescue claim that all autism is mercury poisoning and it really does matter that there is a clearly defined difference between autism and its potential comorbidities. Why? Lots of reasons.

Firstly is the total disrespect shown to those who are autistic, happy with who they are and who have a long established familial history of ASD's. Autism goes much further back than thiomersal - it bewilders me how anyone can swallow this when its such an obvious error and so easy to refute.

Secondly is the worrying trend in research monies. As the rise of the mercury argument progresses research into more viable areas has dropped. in the UK its dropped to something like 8% of all available monies. This sorely affects things like assisted places schemes for adults, PECS for kids and everything inbetween.

We have a situation where autism is being demonised when it seems entirely likely to me that that demonisation is utterly unecessary and wholely harmful. Autism is already one of the least understood of conditions - someone on my blog left a comment that the social model of disability as it pertains to autism is about 10 years behind that of other disabilities. Thats not good and it simply can't be improved on whilst such terrible misconceptions about autism (as oppose to illnesses that cannot be attributed solely to autism) are promulgated.

We as parents really do need to care about what we call our children as well as how we treat them. It really does matter.

10/28/05, 9:10 AM  
Blogger Kev said...

A quick further thought - this should never be about one group telling another group what to do. I think whatever we disagree on Wade, you would find it easy to agree with that.

The whole issue of respect that I touched on above is vital to this point. I can't see how anyone in whats variously referred to as 'the nuerodiverse' (sic) or 'trailor dwelling coo-coos' movement (I'm not even sure what a trailor is, let alone a bloody coo-coo! Is it a big caravan?) is in any position to tell anyone in the Biomed community what to do. We have absolutely zero power. No one interviews us, no one quotes us (except Kathleen occassionaly) - all we do is blog and discuss our thoughts.

On the other hand, its simply a matter of fact that if a cure was discovered that it would soon become a de rigeur part of the prenatal or neonatal process or, depending on the nature of the cure something that was done at an early age (like chelation). This kills autism stone dead.

I can almost sense the victory dances from here.

And yet I would urge you to ask autistics how they would feel about that. Its all well and good a bunch of NT's deciding to rid the world of a certain type of neurology but how about asking the very people it would effect? Seriously. Don't just consider it a rhetorical device of a question, actually go and do it. Go and join aspiesforfreedom.com or ask some of the folks at AutAdvo or wrongplanet.com. Ask them how they'd feel about being the final generation of autistics.

I'm afraid Gingers reply to me is not perfect. Its good and has a valid point but this goes far beyond parental duty. It has points that touch on very uncomfortable places - eugenics, killing what we don't understand.

We have no power to make you hear us but you have every power, should it come to that, to take away something we consider invaluable.

10/28/05, 11:15 AM  
Blogger Anne said...

Wade, the reason I chose perseveration as an example is because it *is* one of the diagnostic criteria under the DSM-IV.

10/28/05, 6:36 PM  
Anonymous Ian Parker said...

Just a thought (and more) on Kev's statement:

"Ask them how they'd feel about being the final generation of autistics."

My 28 month old daughter was finally diagnosed this summer as having "severe autism" (we knew 10 months ago). She qualified on the DSMIV as well as ADOS and ADI-R (Michelle Dawson and my daughter are from the same "here"), and she also has more than her fair share of 'comorbidities'.

Maybe I'm missing something, but I don't see her role in life as filling the pipeline so that the current generation of autistics does not have to be the final generation.

We're following many of the bio-med interventions, plus IBI, and start Communications therapy next week (we finally reached the top of this waiting list). We've had some success, but still have a long way to go in reaching our daughter, as well as eliminating the comorbidities.

We haven't tried chelation (yet?), as we and our DAN practitioners have some concerns with chelation vs. rebuilding her body's ability to self-detoxify.

I'm definitely not convinced that mercury is the ONLY route to autism (obviously autism existed pre-vaccinations). But I do believe that through one or more triggers (environmental or other, potentially including mercury or live viruses) my daughter has suffered a cascading series of medical/biological failures that have resulted in her being the only member of our family to be on the spectrum.

Given that most children do not become autistic, perhaps in her genetic heritage there is a susceptibility that has never previously been expressed. Who knows? One can debate ad nausiem whether there is an autism epidemic, but an epidemic of one makes it personal. As a starting point it is therefore her medical issues that we are seeking to correct, believing that they are contributing to her diagnosis. At the same time we're trying to teach her the skills she will need to lead a life as full of options as she can aspire to.

I'm glad that the neurodiversity movement exists, and that it is fighting for the rights of autistics. All of the nastiness on both sides aside (some people should be very ashamed - but obviously are not), I was very happy to stumble across the on-going internet debate between the neurodiversity movement and the bio-meds. It is actually the neurodiversity group that gives me the most hope that my daughter will lead a self-fulfilling life.

But the rights they are fighting for should not preclude parents from intervening as much as we reasonably can to deal with our children's medical conditions (issues that in my daughter's case show up on standard OHIP-covered blood tests as well as the more esoteric tests that we have to have done out of country). Rectifying these medical issues may or may not also lead to a lessening or recovery from the condition we're all calling autism. But as parents we have the right after careful consideration to try to do what we think is in the best interests of our children.

This includes the right to treat - or not treat, if we feel that is in the best interests of our children. Given the degree of bio-med knowledge/uncertainty, it is a judgment call and a personal decision. They can blame us when they're older - that's a universal condition. But we will not willingly put our daughter into the pipeline, regardless of how anyone else feels.

10/28/05, 6:56 PM  
Blogger Wade Rankin said...

Ms. Dawson,

I agree that autism cannot be diagnosed "solely" on the basis of social deficits, but those deficits are still a part of the picture. Thank you for correcting my error about Kathleen. I'm not sure why I made that mistake, but my saving grace here is that I don't think she'll be offended and she knows I would mean no offense. I considerd removing my reference to her, but I agree with you that she is better left in a group of capable people.

Believe it or not, Ms. Dawson, I do read the science and I actually understand much of what I read. If you mean to imply that science has done a very complete job of explaining autism, its causes, and its effects, I cannot agree.

Kev,

Good to hear from you. I freely admit I have not read anything by Attwood, and I would appreciate any good suggestions. I'm afraid I haven't been able to take Baron-Cohen's opinions too seriously after his social mobility explanation for the increased incidence of autism.

Finally, Kev, I am not a huge fan of some of the statements from Mr. Best, and, despite his association with an organization I respect, I don't think he speaks for us all. There is too much demonizing (sorry, chum, I’ve got to go with our spelling on that one) of individuals on both sides of this debate, but I know of relatively few parents within the biomedical community who would demonize autism. I think (or at least hope) Ian Parker's wonderful comment above is far more typical of us.

10/28/05, 8:16 PM  
Blogger Wade Rankin said...

One more response to Kev,

You say Ginger's response was not perfect, but I still believe it was. Your question to Ginger was essentially “who are we” to take these actions, and Ginger’s response was that we are their parents. I believe you may be thinking in terms of what “right” we have, but I believe the real issue is not of “right,” but rather of authority and responsibility. As parents, we have the legal authority to make decisions on behalf of our children, but the more important question is the exercise of moral responsibility that must guide those decisions.

10/28/05, 9:25 PM  
Blogger Kev said...

Well Wade you wouldn't be alone in viewing SBC somewhat skeptically ;o)

Ians comment was good to read. Its nice that more and more people can appreciate the shades of grey. However, I wasn't suggesting that anybodies role in life was to act as a continuum - rather that breaking a continuum of that sort is not something any of us should consider lightly. We are edging into very morally ambiguous grounds if thats our stated intention.

"but I believe the real issue is not of “right,” but rather of authority and responsibility. As parents, we have the legal authority to make decisions on behalf of our children, but the more important question is the exercise of moral responsibility that must guide those decisions."

Well as I said to Ginger, illness trumps neurology so if someone is ill and treatment for that illness impacts neurology then you have no choice.

Moral responsibility. Thats something that can be argued either way. Is our moral responsibility to remove what we don't understand or is it to treat a mercury induced condition. One is a philisophical argument. the other is provable or disprovable by science.

10/29/05, 12:14 AM  
Blogger Kev said...

Oops forgot:

Tony Attwood:

Thank you for your message and I share your concern with regard to the zealous way in which some people would want to cure autism. I think by doing this we would lose one of the essential aspects of the human condition. My concern is the severity of expression of autism rather than to eliminate autism all together. I also think that autism is such a complex condition with many causes that it would be impossible to find one cure. I think the approach should be one of encouraging understanding and adapting the persons circumstances to reduce some of the negative effects of autistic spectrum disorders.

In an email exchange with Amy of Aspiesforfreedom.com

For me its exactly as I feel.

The SBC piece is too long to quote so I link to it instead.

10/29/05, 12:20 AM  
Anonymous Michelle Dawson said...

There are often conflicts between the interests of disabled children and the interests of their parents.

Three Charter cases involving these conflicts have been heard at the Supreme Court of Canada. The parents in all three (Eve, Eaton, Latimer) were absolutely sure that they were doing what was right for their children, and that they had a "right" to treat their disabled offspring as they saw fit.

The parents lost every case.

In non-autism areas, there are also professional ethics which arise when there are conflicts between the interests of parents and the interests of their atypical offspring. In non-autism areas, it is also recognized that public funding and public policy with respect to atypical people are tremendously powerful reflections of the public will.

In autism, it's assumed that autistics have no interests except those assigned to us by non-autistics, and we therefore merit no ethical consideration as autistics. People deemed to have no interests of our own are not seen as experiencing right and wrong or harm and loss. Instead, we're deemed to be oblivious, non-comprehending, emotionless, and/or non-sentient. I've frequently been treated like this myself (this being the subject of many legal cases).

And this is how autistics are treated in arguments about who gets to do what to autistic children and who pays. I've never understood why some parents not only find this acceptable but defend this vigorously against any notion that autistics merit ethical consideration.

Not that it matters, but I'm no fan of Drs Attwood or Baron-Cohen. Dr Baron-Cohen at least does research; Dr Attwood is very successful at marketing (and he's very expensive). One of the studies from the group I work with debunks one of SBC's central tenets. You can get this study free here http://www.traininautism.com/Mottron/2004%20superior%20spatial%20abilities.pdf

I have no idea what research you're reading, Mr Rankin, but it's not research that encompasses a variety of empirical evidence about why autistics aren't like non-autistics. Or anyway I've seen no sign of this in your writing so far. I never suggested that you would be incapable of understanding this research if you chose to read it.

And I still disagree with Kev (and everyone else) about co-morbidities. Should I give a list of mine? Maybe another day.

10/29/05, 6:08 AM  
Blogger Kev said...

I'd definitely be interested in hearing your thoughts on comorbidity Michelle. Amanda (Baggs) has already tweaked my thoughts somewhat but in no way am I suggesting I'm definitley right so any further light shed on the matter can only help.

10/30/05, 10:29 AM  
Anonymous Michelle Dawson said...

Kev, I don't want to impose too much more on Mr Rankin's blog and I agree with what Amanda wrote on your blog (which, if I remember, was pretty good science, too). There's no point repeating this. But I'll list two "conditions" I have and question whether they're "co-morbidities":

1. Asthma. But if that's a co-morbidity of autism it's a co-morbidity of non-autism too. I guess I don't see autism as "morbid". Other conditions, like celiac disease and "gastric problems" are common in the autistic and non-autistic populations. They have no association with autism. Failing to take care of someone's health (wrong diet to a celiac person) is harmful to both autistics and non-autistics. However, autistics have the additional challenge of growing up and living in a world profoundly hostile to and ignorant of autistics--making it unlikely, e.g., that we will be observed accurately.

2. Amblyopia. Now, this can plausibly be associated with autism (e.g., born with strabismus, develop amblyopia). Go ahead, call it a "co-morbidity"--after all, it involves permanent loss of vision, something that's clearly very bad. And if you treat this "co-morbidity", my autism well get "better", right? Uh, no. In my case, amblyopia is extremely adaptive. Had it been fixed successfully, I may have been doomed.

In fact, a lot of stuff I have which would be judged really dysfunctional by the usual standards is extremely functional and sometimes essential to me in this totally-hostile-to-autistics world. Someday, we should find out what autistics could do (and what our health would be like) in a world where it's okay to be autistic.

10/31/05, 12:11 AM  
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