Tuesday, June 13, 2006

Moderate Does Not Mean Neutral

There have been occasional comments on and off from the neurodiversity side that refer negatively to some bloggers and/or commenters as being moderate or neutral. This is the latest one to catch my attention:

Some people don’t believe in “rocking the boat,” they want to give themselves the superficial sheen of “neutrality” and portray themselves as being on the moral high-ground by staking out their imaginary “middle ground.” I think they are part of the problem, myself.

I’m guessing that they are not aimed at me personally – I recognize that my profile is not high enough to gain enough notice (that’s not a lament, just a statement) – but regardless, I thought I’d reply on behalf of at least this one moderate bio-med parent.

So, let’s start with a couple of definitions.

First – Neutral:
1. Not aligned with, supporting, or favoring either side in a war, dispute, or contest.
2. Belonging to neither side in a controversy: on neutral ground.
3. Belonging to neither kind; not one thing or the other.

Second - Moderate:

As an adjective:
1. Being within reasonable limits; not excessive or extreme: a moderate price.
2. Not violent or subject to extremes; mild or calm; temperate: a moderate climate.
3. Opposed to radical or extreme views or measures, especially in politics or religion.

As a noun:

One who holds or champions moderate views or opinions, especially in politics or religion.

So, let’s note the difference: neutral means not aligned with, belonging to neither side in a controversy. Moderate means being within reasonable limits, not subject to extremes. To be clear, moderate does not mean neutral, and I am definitely not neutral.

For the record, I consider myself a moderate bio-med. I draw a distinction between autistic thought and autistic disabilities or ‘issues’. I do not believe that there is anything wrong with autistic thought per se, and I am not seeking to cure my daughter of this type of thought. In this I believe I am in broad agreement with those holding a neurodiversity point of view. For the record, I myself am probably part of the broader autism phenotype (BAP), and share more than a few characteristics with my daughter. These traits, including an ability to see the world a little differently than most, have served me well. The difference between us is that I do not seem to have incurred any significant disability (aside from an occasional social cluelessness) to go along with these traits. But my daughter has, and I am seeking to ‘cure’ her of her communications and sensory integration difficulties, believing that they drive her autistic disabilities. In this I am much closer to the mainstream and ‘cure’ side of the autism debate.

As to etiology, I believe that there is more than one cause for autism, and that autism is probably more than one ‘disorder’. My previous posts demonstrate that I clearly believe that there is an underlying genetic vulnerability, but I also believe that there is evidence that ‘something more’ is often required. In the Bear’s case I believe that the ‘something more’ is likely immune/auto-immune related (these issues are in the family), but I am also open to the possibility that it is environmental (defined broadly). I strongly support research efforts to find the causes of autism, and consider myself in opposition to those who do not support this search.

Having said that, I also oppose poorly conducted science, which I believe does not serve anyone well. Exploring a reasonable hypothesis that does not have mainstream support is not poor science. Exploring hypotheses without using the scientific method and without having the goal of arriving at replicable results that can withstand peer review is poor science. Some on the treatment side have conducted poor science, and I believe that the result has been an overstatement of results and a damaging loss of credibility that may slow the ultimate search for answers. I also think that the ‘all autism = mercury’ approach has hampered other research that may find other causes, and I disagree with those that take this one-size-fits-all approach to autism research.

As for treatment, I am definitely on the bio-med side of the debate. We have tested our daughter, using Ontario government health system labs and the Kennedy Krieger Institute, and have found clear medical and nutritional issues that are obvious to mainstream medicine (and for which our very mainstream pediatrician has referred us to specialists). One of the things I am grateful to Kev for is a statement he wrote in 2005 (and I’m paraphrasing) that if an issue is real then it should be detectable by a reputable mainstream lab. We have followed this approach, and mainstream testing has identified – among other things - serious nutritional issues related in part to absorption deficiencies in my daughter. We have worked to correct these issues, using diet and supplements (under the care of a PhD in nutrition) in dosages that take into account RDA limits, and have been successful in controlling and even eliminating some medical issues. We have also seen increased development in our daughter during this time, but I cannot guarantee that the bio-med treatments are the sole source of this improvement.

We do not chelate our child, and to be honest, the process scares me. For the record, my daughter has some potential heavy metal issues (not mercury) that showed up on a mainstream test (discovered by accident – we were testing for essential minerals and ticked the toxic panel as an afterthought). Our approach has been to monitor this and try to naturally rebuild the Bear's detox system rather than use chelation. But I do not oppose others using chelation as long as they have clearly dealt with other bio-medical issues first, have tested their child and found the presence of heavy metals, and are careful to conduct chelation under qualified and experienced supervision and with regular testing/monitoring performed by reputable labs to ensure that no harm is being done.

I am also on the interventionist side in terms of education. My daughter is in an IBI program five mornings per week. As I posted previously, “The goal of her program is not to get her to ‘pass as NT’ - before she was enrolled, the program head very clearly told us that the IBI program would not make her ‘normal’. Instead, it is to teach her skills that will enable her to better and more independently function in the world. Absolutely no effort is expended to get her to act ‘normal’. Instead, she is developing her gross and fine motor skills (e.g. learning how to walk up and down stairs or turn a doorknob), looking at books, learning to communicate through PECS, etc.”

Further, we don’t use IBI to stop her from stimming, since ” we view her stims as a method of communication, self-orientation, and comfort. Her IBI program feels the same way. Instead of trying to make my daughter look NT, they’re trying to teach her the skills that will help her as a human being, regardless of her neuro-orientation.” And as part of the program, ”IBI taught my daughter the first two stages of PECS, as well as helping her to understand the purpose and value of gesturing to communicate. When she gestures, they follow her lead, and they believe that it is important to encourage this. She can now take someone by the hand and lead them a considerable distance to the object of her desire and then communicate to them what she wants, despite being unable to form a single word. As she learns to discriminate between the PECS cards her communications abilities will improve further. Note that none of this is making her any less autistic, but all of it is enabling her to better interact with those around her, make her needs known, and get them met – including her need to socialize and have fun.”

We also have access to a speech and language program, that we’re currently using to teach the Bear stage three of PECS (discrimination), which she is picking up very quickly. Since she cannot talk, we figure that we need to find her another way to communicate, and through both PECS and gesturing she can usually make herself quite well understood. We also had access to OT services, but this access is petering out now that she is nearly three years old. We do have a couple of follow-up sessions due to the generosity of our OT provider, but would welcome more OT support if we can access it.

As for some of the public issues regarding autism, e.g. demonizing autism, the Autism Speaks video or the murder of Katie McCarron, again I am clearly not neutral. My daughter has every right to the same degree of respect and security of person as anyone else, and I oppose any effort to demean, belittle, disrespect, or threaten her because she is autistic. While I do not condone the use of tragedy to falsely label others or to support ideological goals (sorry, but supporting an interventionist or even cure approach to autism does not equate with condoning or justifying murder, and it is insulting to attempt to make or insinuate this link), I will stand with those who respect my daughter and support her rights, and speak out against those who do not.

So, overall we are firmly on the interventionist side of the autism debate, although moderate in application, and - we believe - respectful of our daughter. We are not intervening to ‘cure’ autism, but to treat and hopefully ameliorate the issues that some believe are co-morbidities and some (including us) suspect are the drivers of autistic disabilities. We firmly believe that if we can achieve this our daughter will still be autistic in thought, part of the BAP, and we have absolutely no issue with this – again, our issue is with autistic disabilities, not autistic thought. If our daughter retains her ‘severe autism’ diagnosis then we will accept that too. Our joy is not the Joy of Autism, but the Joy of the Bear, and she will continue to be our joy regardless of her outcome.

What I find interesting is that moderation (not necessarily my moderation, but moderation in general) seems to be threatening to some. My guess is that moderation is probably a greater threat to the ideological poles than their polar opponents. There is a history of extremes targeting moderates to turn situations into a clear black vs. white, ‘us’ vs. ’them’ issues, eliminating any room for diversity of viewpoints or compromise. It is easy to caricature or ridicule an extremist opponent (e.g. ‘all autism = mercury’ is downright silly), but it is harder to ridicule a moderate interventionist approach backed by replicable medical tests and following a moderate educational approach based on what many would consider common sense. In this, moderates could therefore be considered the greater threat.

I’m not saying that my approach is necessarily correct, or that others should follow it. What I am saying though is that it is a reasonable attempt, backed by mainstream derived evidence, to follow a common sense path to help my daughter grow into the person that she is in the process of becoming, and we have a right to follow it. I’m not saying that everyone has to agree, but I have the right to hold my opinions, they are no threat to anyone else, and they do not make people like me ‘part of the problem’.

I’m not neutral. I’m on the side of the Bear.

11 comments:

Ms Clark said...

When I wrote that I wasn't thinking about you at all. I was thinking about ones who seem to me to desperately want approval from folks like Kevin Leitch and on the other side folks like Wade Rankin and/or Handley. You have the guts to say that chelation is not for your child. It's not possible for you to have that "sheen of neutrality," you took a stand. I have no problem with the labs you mention. I'm not sure if IBI is the best way to teach Bear, but you have no reason on earth to be consulting me, and I seriously doubt you could do lifelong serious damage with that program if you aren't trying to force him to drop stimming, etc. Sounds like you are seriously into "acceptance therapy" to me. If you are seriously into "accpeptance therapy" then I would say you are not trying to be neutral. Moderate is fine.

Ian Parker said...

Hi Ms Clark,

You wrote:

"When I wrote that I wasn't thinking about you at all. I was thinking about ones who seem to me to desperately want approval from folks like Kevin Leitch and on the other side folks like Wade Rankin and/or Handley."

Thank you for stopping by and letting me know that. I appreciate it. While you and I don't agree on everything, as I've said before, we probably agree on quite a lot, including the need for respect and acceptance for those on the spectrum.

As a quick note on IBI, I can't speak for all ABA/IBI programs, but I would say that my daughter's program is quite 'liberal' (I can't think of a better word, but I'm trying to distinguish between them and a doctrinaire Lovaas approach). They really do respect my daughter, and are not seeking to stamp out her autism but to teach her, provide opportunities to learn, and broaden her horizons.

As an example, I (yes I, not my wife) made up a pot of GFCF play dough last night at their request (since we were unwilling to sanction their gluten version), so that they could introduce it to her - not as a drill or a reward, but as a fun sensory and learning experience.

Next up, fun and games with paint.

Wade Rankin said...

Before getting to that rather odd comment Camille left, let me just express appreciation for a great post. You have clearly chosen the "right side," Ian, and the Bear is a lucky girl.

Although I can't speak for JB, I would like to say for the record that I have never actively tried to curry favor with Kev (although I am happy to say we have often exchanged friendly greetings) or anyone else. Indeed, if I were trying to impress someone, it would make more sense to express more radical opinions than I have in order to be "someone" in the cure community that I obviously have more in common with than the neurodiversity community. I find it amazing to be criticized for having views that do not strictly follow any party line, but I can live with that.

María Luján said...

Hi Ian
I want also to express my appreciation for a great post.
Like you, I do not feel that I have to choose one "side". The only side I see as adequate is my son´s side. In this sense, I also try to consider the best of neurodiversity and biomedical, although like you, depending on my personal experience, I have found myself more related to biomedical in some points and more close to neurodiversity in others and with neither several times.Like you, I do not think about myself as neutral.
I think about myself as a moderate that tries to give all ideas in ASD an analysis and a scientific approach, even if it is not currently accepted and to every person in contact with me the same consideration and respect I ask for me. Because we are talking many times about our autistic children, besides ASD in general, all the emotional, psychological and safety aspects related to them are extremely important to me. Also all the infinite aspects of parent-child relationship that I consider fundamental because we can heal detected medical conditions, to nurture them to give them the physical care they need, the house the need but they need also a home, as every of us needed and every child needs and deserve, and all the incredible and powerful demonstrations of the infinite variations and aspects of our inconditional love.

What a beatiful daughter you have!!
MAría Luján

Ian Parker said...

Hi Wade and María Luján,

Thanks for the nice thoughts. Personally, I think that I'm the lucky one, for having the Bear as my daughter.

One of the things I think we three share in common is an openness to other ideas. Unlike the more extreme, who 'know', moderates have a point of view but are willing to 'talk' with and learn from all sides, including those with whom we may often disagree. I consider all three of us to be moderates.

Moderates are also willing to let others disagree without seeing all disagreement (potentially excluding some attacks on core principles) as a challenge. While I'm sure the three of us do not agree on everything, I doubt that any of us see the need for full agreement, and can respect the views of others even if we do not follow them ourselves.

And María Luján, I think she's a cutie too. Thanks.

JB Handley said...

Ian:

I agree with everything you wrote here, kudos to you for your balanced approach.

I think your moderate tone is more threatening to those on the "other side" and I appreciate you pointing out the clear insinuation of a link by Kevin between the biomed approach and murder.

Very best,

JB Handley

Ian Parker said...

Hi JB,

Thanks for stopping by and for the comment. Nice to make your acquaintance.

We probably do not agree on everything, just as I don't agree with everything from the neurodiversity "side", but I hope that over time we can have a productive dialogue. As I said in my "About Me" blurb, "We don't need to agree: I learn the most from those I don't agree with."

Thanks,

Ian

Kristina Chew said...

Am definitely all for the "Joy of Bear" ---- which you make more than clear here in A Shade of Grey.

Do'C said...

Hi Ian,

An excellent post!!! Good on you for this.

"Exploring a reasonable hypothesis that does not have mainstream support is not poor science. Exploring hypotheses without using the scientific method and without having the goal of arriving at replicable results that can withstand peer review is poor science."

I could not have said this better myself.

JB, how can you possibly agree with everything, like the part above? You applauded bad science with your November NYT ad.

Bernard - Not peer-reviewed, and discredited.

Jim Adams - Not peer-reviewed in a journal indexed on pubmed, or likely to be replicable at all.

Ian Parker said...

Hi Kristina,

Thanks for stopping by. Yes, the Bear is my joy, and will remain so regardless of outcome.

Hi DoC,

Thanks for stopping by and for the compliment. Sometimes one has to state exactly where one stands (well, I didn't reveal my thoughts on the Lindbergh kidnapping controversy), and this seemed like a good opportunity.

That it is possible to simultaneously hold opinions that are held by one 'camp' or the other may also suggest that while there are some issues that may always divide us, there is a lot that we may all share, and interests that we have in common.

Perhaps through productive dialogue, more of these may come out.

Autism Mom Rising said...

What a fantastic, nuanced explanation of your views. I too am part of the BAP. Since I grew up with several undiagnosed developmental conditions, I know what is like to be told as a child, "why can't you be more this way or that." Therefore, I am very adamant that my Autistic son is loved and respected exactly as is. And, I we do use bio-medical treatments, on both mother and child, to improve the most challenging aspects of our conditions. Cheer to you for offering a nuanced words that could actually speak to many of us moderates who are so often marginalized in this debate. Thank you