Thursday, August 18, 2005

TRYING TO UNDERSTAND THE NEURODIVERSITY MOVEMENT

A seemingly universal part of the human make-up is the steadfast belief each of us has that we are right. A problem arises when we try to apply to others’ lives that which is right for ourselves. Sometimes when I make that mistake, I take a step back. Only then do I realize how easy it was for the other person to interpret my compassion as arrogance.

Lately I have noticed a great divide forming on the internet between those of us attempting biomedical treatments for our children on one side, and members of the neurodiversity community on the other. That divide is difficult to put a finger on, partly because, by definition, the neurodiversity community is … well … diverse in composition and beliefs.

As parents, we know that our autistic children are capable of far more emotion than stereotypes portray. I know the gut-wrenching experience of seeing “typical” kids ignore my son, or, worse yet, seeing idiotic adults assume my son is mentally retarded. Members of the neurodiversity community know that same pain, but they seem to feel it is caused as often by the actions or words of anti-thimerosal/biomedical advocates as much as it is by unfeeling members of the general public. It is incumbent on all of us to learn why they feel that way, and perhaps look at ourselves.

One of the most visible commentators from the neurodiversity community is Kathleen Seidel. I have been reading some of her web site, but I need to read a lot more before I feel I can intelligently comment on what she has written. At this time, all I can say is there is a lot I disagree with, but there is also a lot with which I agree. I want to learn more from -- and about -- Ms. Seidel before I condemn or praise her.

Why should I want to learn anything about folks who seemingly believe that autism, Aspergers, and other parts of the spectrum are not so much diseases as the normal condition of their lives? What can these folks teach those of us who treat autism spectrum disorders as diseases for which a cure may possibly exist?

While trying to learn more about neurodiversity, I came upon a blog entitled “Thoughts of a High Functioning Autistic Teen.” In her writing, an extraordinary young woman lifts up her frustration, her pride, and, yes, her anger for our enlightenment. She is intelligent, articulate, and very self-aware. And she does not wish to be cured. Instead, she wants respect for who she has become and who she will become. This teenager deserves that respect.

For those of us who believe strongly in biomedical treatments, it is easy to think it is “the answer” for everyone. Most of us who practice biomedical do so partly because we know that, absent some form of intervention, the odds are that our children would never reach the extremely high functioning level of communication practiced by the teen-aged author of the above-referenced blog. We want our children, when they reach their later teen years, to be able to tell us how they feel about the choices we make in their lives.

I hope the choices my wife and I make for our son may enable him to attain a level of independence he might otherwise not achieve. But I am trying to learn to set aside my arrogance and respect the decisions that others make. I am trying to learn to look beyond my own son when I see another autistic child.

35 Comments:

Blogger Ginger said...

I had planned on writing something about this, but I feel like you have said it all for me.

I think there is so much to be learned from this group, but my head is so burried in getting my child to the place where he could join this group, that I have no time to hear from this group.

Thanks for expressing such a balanced sentiment.

8/18/05, 1:26 AM  
Blogger Brett said...

I started to write a comment, but it ended up being so long I turned it into a post of my own. Excerpt below:

As parents, it is our responsibility to help our children through their early years and to help them grow into the person they will become. While I do adhere somewhat to the neurodiversity claim, I do not believe that as parents we should just live with it. No more than I believe we should just "live with it" if our neuro-typical kids have troubles, be it in socializing, academics, whatever. All kids need the guidance and nurturing of their parents, friends, and family to become the "best" (wow, what a loaded term) they can.

8/18/05, 10:43 AM  
Blogger Wade Rankin said...

Brett's comments -- both here and on his own blog -- state very well why we do what we do. It's not because we consider our children to be "defective." My concerns for my son on the spectrum are not that different than the concerns I have for my two neurotypical children. Thanks Brett.

8/18/05, 12:17 PM  
Blogger Clay said...

Hi Mr. Rankin,

You seem to be a reasonable and intelligent person, so I will try to answer your questions helpfully.

First, about me, I am a 59 yr old man who only recently, (well, 6 yrs ago), was diagnosed as an Aspie. I can assure you that this was Not as the result of any thimerosal laden vaccination. I have reason to believe that it runs in my family, with a cousin, my son, and possibly my mother and her father on the spectrum. (Her father was born in 1881.)

I have met Ms. Seidel, and know that
she is highly intelligent, as you may also know just by reading her. I wonder what you disagree with on her website? I find nothing to disagree with, everything she says accords with my experience of being autistic, and also communicating with many others over the years on the internet.

You don't say how old your son is, or what sort of difficulties he has,
nor which biomedical treatments you are using. Those would be helpful to know, as I could direct you to information concerning them.

I personally know an autistic person who did not speak until the age of 12, but today has a PhD. There are many others I know who have all sorts of degrees, and are able to communicate perfectly, although perhaps by means of a PC, or other device. We ALL learn and grow, even if not on the same time-table as others.

I can assure you that ASD is Not a disease, but is more likely to be inherited. It should not be confused with any symptoms resembing autism which were caused by thimerosal, which would be mercury poisoning instead.

I won't deny it has caused problems in my life, but those same problems were actually caused by people who could not accept any variation in the social norm. It has also given me some benefits, and I would not trade those for anything. Nope, I don't need a cure, wouldn't take one if you had it, and my only fear is that they will eventually develop a pre-natal test to identify autistic genes so they can selectively abort us.

Mr. Rankin, there is no amount of chelation, creams, bath salts, or whatever that will strip autism from your son, if that is what he has.
"The answer" for you is that you should love and accept him as he is,
and work with him to help him understand this world, and to achieve the most of which he is capable. Good luck, sir.

8/19/05, 6:04 PM  
Blogger Wade Rankin said...

Clay,

Thank you so much for your kind comments. I agree with your assessment of Ms. Seidel’s intelligence, which is why I want to read more of what she has written. After I have done so – and hopefully heard from folks like you -- I certainly plan to revisit the subject of neurodiversity in a full post. In the meantime, I certainly welcome the opportunity to engage in a respectful dialog here.

Not surprisingly, my disagreements with Ms. Seidel is over the impact thimerosal has had on the rise in diagnosed cases of ASD. Nonetheless, I am not so arrogant as to try and say that I know with any degree of certainty that I am right and she is wrong.

Although it is not necessarily a “disagreement,” I also think some of the comments by parents that she finds objectionable may not be as egregious as she believes given the context in which the comments were made. On the other hand, I have heard reports that Ms. Seidel has been subjected to unwarranted verbal attacks that would make anyone wary of giving the benefit of the doubt to people associated with the offending parties. That is certainly a subject I would like to explore more, but I really need to look at what actually was said or done before commenting further.

I agree with you that genetics is certainly the underlying cause of ASD. The question becomes the degree to which environmental, including but not limited to thimerosal, can trigger symptoms. I cannot say that environmental factors always play a role, nor can I sat that thimerosal is the only environmental trigger out there.

As for my situation, my son is six years old, and has been diagnosed as being on the spectrum. Is it truly ASD or is it mercury poisoning? I can only tell you that mainstream physicians called it autism.

I prefer not to discuss specific protocols we are following because I believe it opens the floor to entirely too much debate on the pros and cons of various methods. Suffice to say, we are utilizing an approach consistent with what I discuss in the post entitled “Voodoo Works! (Part II).” I can tell you that my son was regressing steadily until we began to treat him biomedically, and he has made steady progress since that time. I don’t deny the possibility that he may have improved without biomedical intervention, but my wife and I firmly believe that there is a cause and effect between the treatment and his improvement.

I assure you, sir, that my wife and I love my son very much, and we will accept him for the person he will become regardless of whether that person matches any idealized visions we may have ever harbored. Yes, we will endeavor to help him understand his world, and we certainly are trying to help him achieve the most of which he is capable. And that is the point of doing what we are doing.

All that being said, one of my interests in doing this blog is to discuss broad issues, including the question of how we need to treat each other with respect while debating an emotional issue. I firmly believe that we can never find any common ground if we shout at one another, insult one another, or patronize one another. The fact that you and I can have a civilized and respectful discussion like this will hopefully help others see that a true dialog is possible.

8/19/05, 10:20 PM  
Blogger Wade Rankin said...

It's me again. Once again, Brett at "29 Marbles" addresses this issue, and, once again, manages more eloquence in fewer words than i am capable of.

8/19/05, 10:49 PM  
Anonymous Shea said...

From what I understand of the neurodiversity movement, they have some points I agree with, and some I don't.
I don't think so-called interventions and other methods to help autistic children develop skills they will need is a bad thing. Nor is biomedical treatments, like intake of fishoils etc. Life is about compromises, and the ideal of complete acceptance just as you are is not feasable, nor likely to happen in this flawed world.
Its the idea of cure, in the sense of totality, that raises our ire. We are different, its as simple as that, so what is to cure? Gladly, I would accept help to further my development. But to change the essence of who we are? Surely you can understand our sentiments about this idea. Imagine something essential to who you are, and having someone ELSE decide that it is not right you should be like that. Would you not feel violated?
The closest thing I can think of, is if someone decided being male was a defect, and they set about to find a way to "cure" it. Would you not feel outrage/violated?

8/19/05, 10:56 PM  
Blogger Clay said...

Hi again, Wade,

I hadn't read all of your entries before, just "Time well spent" and "A new blog". I won't try to argue with your methods; you say he has improved, and I will believe you. I certainly believe that you and your wife are caring parents, and so I will only urge you to continue reading the entries in neurodiversity, to get an
all-round perspective on the issue. She writes SO much better than I, that there's just no comparison.
(Look for me in the poetry section.) Since reading your last comment, I've read "Voodoo works" and "Food for thought". Again, I'll refer you to Ms. Seidel's site for her take on Dan Olmstead's use of Donald T.'s
personal life story, although without Mr. T's permission to do so.

I've bookmarked your blog, and look forward to more civilized and respectful discussion.

8/20/05, 12:03 AM  
Blogger Wade Rankin said...

Shea, I agree wholeheartedly. The need to respect the dignity and autonomy of the individual seems to be the primary message of the neurodiversity movement. It is certainly a message I embrace. As long as we keep that common belief front and center, we can calmly discuss the points on which we may disagree.

Clay, welcome back. The point you raise about Donald T.'s lack of permission granted to Mr. Olmstead is interestinig. Approaching it as a lawyer, I believe Mr. Olmstead's reliance on published materials and interviews with a family member was legitimate. But your comment made me realize that I was not fully considering Donald T.'s feelings about being the subject of a news item. In Mr. Olmstead's defense, he did avoid identifying the exact location where Donald lived.

The right to privacy is an issue I take seriously. I struggled with the decision of whether to use my full name in writing this blog, knowing that it would mean discussing my son's ASD. I eventually went with my personal opinion that a signed opinion is of more value than an anonymous opinion. All I can do is try to make this something my son will be proud of when he grows older.

I will certainly check out those portions of the web site you mentioned. And don't sell your writing short. Your contributions are most welcome here.

8/20/05, 12:23 AM  
Blogger Clay said...

Hi again,

The question is, how did Olmstead find out the surname of Donald T., as he was only referred to as such in Kanner's and Johns Hopkins' records? Who provided it to him?

After requesting and being denied an interview with him, he went to see the man's brother, who was unaware of the controversies surrounding autism, and so unwittingly supplied so much information about his brother that *anyone* could go and find him. I wouldn't call that ethical, and the answers to the questions above may show it to be actionable, as well. Isn't that true?

8/20/05, 2:16 AM  
Blogger Lili said...

I'd just like to say a couple of things, as an adult on the Spectrum (Asperger's) with two children on the Spectrum (one with Asperger's, one with Autism).

First, I can say that in our case ASD is clearly genetic. I can say for sure that my daughter does not have thimerosal poisoning, because she has never had a vaccination, nor a shot of any kind, nor has she ever been on any sort of medication, antibiotics, or anything like that. We live in rural Ireland where pollution levels are low.

Even so, she is currently the "lowest functioning" autistic in my family (I also have an Aspie brother and three nephews on the Spectrum who live in the States).

My daughter is blossoming and developing new skills rapidly despite a complete lack of any formal therapies. She is currently mostly non-verbal but makes improvement every day in her communications skills, which in my mind is the most vital skill to have.

I should point out that the vast majority of those of us on the Spectrum, whether we are treated with chelation or ABA or whatever the therapy-of-the-day is, or whether we are not in any formal treatment at all, will make steady progress throughout our lives, as long as we are in an environment where we are loved, supported and encouraged. The autistics who are ignored, negelected or put into sub-standard institutions may not do so well, but none of us are doing that to our children, so we can naturally expect them to grow and progress.

My daughter will always be autistic. I will always be on the Spectrum and so will my other family members. I only want us all to be the best autistics we can be- I have no desire to remove autism from any of us. If someone offered me a magic pill tomorrow I would turn it down. I believe that ASD has added a richness and beauty to our lives. No, it's not always easy, but who said life was supposed to be easy?

Autism makes us different- not broken. If the world could accept us as we are, and allow us to live our lives without being forced into the neurotypical mold, we would go a long way towards having happier, more fulfilled lives.

8/20/05, 5:05 AM  
Blogger Wade Rankin said...

Clay,

Once again, you raise some points about the "Donald T." article that I wish Mr. Olmstead would address. It is not abundantly clear how Mr. Olmstead found Donald, but I must point out that enough clues were given in some of the quotes I’ve seen from Kanner’s writing that it would not take much of a detective to find him. My reading of the article does not say that Donald refused an interview, but rather that he simply did not respond to the request. I would assume that this information was communicated to the brother who could then decide whether to cooperate with the story. That would seem ethical in terms of any professional guidelines, but the larger ethical question (i.e., general morality) remains. Unfortunately, there’s no way to really examine that question without more information than Mr. Olmstead gives in his story.

As I said before, I often worry about whether I am intruding on my son’s privacy in a way he might resent when he gets older. I hope not.

Lili,

Thank you for joining this discussion. ASD is such a complex matter that scientists need to keep looking at all aspects, including genetics. that seems to be where the most exciting research is being done these days, and I certainly hope that it leads to better understanding rather than the potential purpose Clay spoke of in his first comment. One thing I am in complete agreement with you and Clay about is that we all need to stop obsessing about having “perfect” children, and instead rejoice in who they are.

Any treatment we provide for my son is administered with love. How much of his improvement is due to the biomedical interventions and how much is due to the environment we provide for him? All I can tell you is that we are doing the best we can in every way.

Certainly, your family history shows that thimerosal is not the only issue to discuss when we address causation. (Unlike some folks, I believe individual cases are important.) As I have said before, genetics underlies everything. But I remain convinced that environmental factors play an important role in triggering symptoms. Whether particular symptoms would manifest themselves without environmental triggers, or whether it is just a question of degree, may be the next question. (For any doctors out there, I know my use of the word “symptom” is a bit off here. It’s just more polite than saying ‘clinical indication.”)

Lili, the first question that occurs to me is how much fish do you and your family consume? Do your soils contain appreciable levels of mercury or lead? Environmental toxins do not necessarily require medical products or local industrial pollution. Many of us focus on thimerosal not because it is the only causative factor, but because of the pervasiveness of the risk and the enforced nature of the exposure.

The points on which we should all agree are that every human being -- whether they are on the spectrum or are neurotypical -- deserves to live a life of dignity, and each of us merits respect.

8/20/05, 9:24 AM  
Blogger Lili said...

To answer your questions- I am very, very careful about organic toxins, since proper, safe nutrition is a particular concern of mine- you could even call it a perseveration.

We eat a lot of fish, but only eat safe fish- and I have done a great deal of research into what is safe. Much of the fish we eat is wild-caught salmon and trout, caught by local fishermen from a river that runs less than 50 yards from my back fence. We eat mostly organic foods and have done so for years. My local soil and water is not contaminated with lead, mercury, phosphates or nitrates, and my daughter has an excellent mainstream doctor who has tested her for both lead and mercury poisoning.

Heavy metals are are not a factor in my daughter's case. My daughter's autism is not caused by poisoning of any kind- it is genetic, pure and simple.

My daughter is also not mentally "retarded"- in fact, her IQ is thought to be in the gifted to genius range, despite her difficulty with verbal communication. True heavy metal poisoning does cause severe learning disability, in all cases. I don't believe you can find a single example of a case of heavy metal poisoning in mainstream medical literature that does not involve severe learning disability- not just autism, which is not the same thing as retardation.

Another point that should be made is that heavy metal poisoning causes permanent, irreversible brain damage. Even if your child has been poisoned- and I am not here to argue that point with you, because only you can determine the truth for your own family- there is no cure. Removing the metals can prevent further damage, but it will not undo any damage that has already been done.

I must be truthful and say we do use some treatments you might consider "biomedical"- i.e. I have found we are healthier on a whole-foods, gluten-and-casein free diet, we supplement with B vitamins, zinc, iron, trace minerals, and molecularly distilled fish oil and cod liver oil. However, we do this for our physical health, not to cure our autism. I actually encourage such a diet for everyone- even those who are not autistic- because my extensive research shows that all humans can benefit from such a diet.

8/20/05, 2:10 PM  
Blogger Lili said...

By the way, I want to thank you for the thoughtful and respectful discussion that is taking place here. I have bookmarked your blog and will be reading and commenting in the future, if that's okay with you. :-)

8/20/05, 2:11 PM  
Anonymous jypsy said...

Autistic Success
My brief submitted to The Senate Standing Committee on Social Affairs,
Science, and Technology
by janet norman-bain

Excerpt:

In our world, autism makes us different. Not defective, not in need of "medically necessary treatment", not in need of being made "indistinguishable from our peers". Not mentally ill. Yes, autistics and parents/caregivers need appropriate services, support and help, but those services must be as unique as each of us. We need choices. In our world, acceptance and accommodations go a very long way.

Full text is here:
www.isn.net/~jypsy/AuSpin/senate05.htm

8/20/05, 3:10 PM  
Anonymous Clay said...

Hi Wade,

I see you've been visited by jypsy, who is a jiant in the autistic world. ;-) Very fine lady, as is Kathleen.

I dropped by to give you an URL that gives another autistic person's life story, published with her full consent and cooperation. http://tinyurl.com/cf366
It starts on the last page of 3, but you can scroll down to find the link to the first page.

I would suggest that you initiate a conversation with Kathleen on her blog about any issues with which you differ, if you haven't already, and if she doesn't come here. I think she will be better able to answer any questions you may have.

Also, if you go to her website, neurodiversity.com instead of her blog, you will find many articles there, and links to things written by autistics. (I'm in there under "Art and Poetry.) Lots of great stuff by others.

Have a great weekend!

8/20/05, 3:42 PM  
Blogger Wade Rankin said...

Clay and jypsey, thanks for the info. It may take me a while to read as much as I want to on this subject. Between work and family, I don’t have enough time to do this blog justice, and there’s a lot of subjects I want to cover. But I promise this post will not be the last time I address neurodiversity.

Lili, given what you have said, the decisions you have made for your family seem absolutely reasonable. As for my family, we’ll keep walking down this biomedical road and see where it takes us – at least as long as we keep making progress. I would be pleased indeed if you see fit to comment here or on any other post I make. I promise you that any disagreements we may have will be civil.

8/20/05, 5:40 PM  
Blogger Wade Rankin said...

oops, I apologize for misspelling your name gypsy.

8/20/05, 5:43 PM  
Blogger Wade Rankin said...

Oops, did it again. Damn fingers!!! Sorry jypsy.

8/20/05, 8:16 PM  
Anonymous Clay said...

Hi Wade,

I had seen this somewhere before, and looked it up just now so I could pass it on to you. It was written by a Doctor, a father of two autistic sons, and he has tried the biomedical route also. This is what he has to say about it. I hope you find it helpful.

http://www.autism-watch.org/about/bio2.shtml

8/21/05, 8:53 PM  
Anonymous Kathleen Seidel said...

Hi, Wade and all; sorry to be so late chiming in. This will be relatively short; with two different school openings looming, family to visit before the summer's over, way too many emails to respond to, and my own blog entries to write, I'm more than a little backed up.

I appreciate very much your willingness to have a reasonable conversation about all this stuff, one that has the potential to remedy a lot of misconceptions people might have about each other. I noticed your comment on Huffington Post a while ago, and thought, now this is someone who's really willing to talk, instead of getting self-defensive and shutting down. Ginger's another, and I hope to be able to chat on her blog soon, too.

I especially appreciate your willingness to actually read through the things that I've written before coming to any conclusions about what you might think I've said. It seems so simple, but believe me, I have received more than a few emails from people who are angry at me for positions I've never taken and statements I've never made. Things like, "oh, how could you possibly say that parents shouldn't do anything to help their autistic children!" That's something no one in their right mind would say. I've always tried to very careful to affirm the right and necessity of parents to tend to their children's individual needs. I don't think that this is at all incompatible with affirming that human beings who are autistically-wired have fundamental differences from neurologically typical folks that are pervasive and emerge over the course of development. The challenges they face may become less evident to others as they grow older, and they may become easier to navigate as a person becomes more healthy and mature and skillful. This is certainly what I've witnessed as a parent and family member of people on the spectrum. It's also the message I've gotten from the many autistic-spectrum adults with whom I've become acquainted over the years. You've got some mighty fine ones who've already come knocking on your door.

I'm a mom, and I recognize that children's needs are different from one child to the next. For many (but not all), the most pressing and evident needs involve healing of the physical body. Although I tend to be allergic to generalizations, I think it's fair to say that for all children, a primary need is nurturing of the soul.

Well, that's all I have time for right now. All the best to you, and thanks again.

8/22/05, 7:30 AM  
Blogger Wade Rankin said...

Clay,

Thanks for the link, but I'm already quite familiar with Dr.Laidler's writing. When we undertook the biomedical approach, we dedicated ourselves to doing a lot of research, a process that continues every day. My wife is a nurse anesthetist, with a strong biochemical background, and she does most of the heavier reading. I tend to concentrate on the experiential testimonies -- both pro and con -- so we can take that into account. We remain convinced that we are on the right track.

There are a few things I can agree with Dr. Laidler about. There are a lot of vultures out there pushing cures, and parents need to do their research before trying anything. Another thing is that we need to be a little more careful about using the word "cure." We have seen a lot of improvement, and we hope to see a complete reversal of the things that are impeding my son's development. I'll leave it up to someone else to decide if that will constitute a "cure."

One thing that is coming into sharper focus for me, partly as a result of conversations like this, is that there is not just one model for ASD, and not just one response to it.

As a personal aside to Clay, I was able to find your poetry after a little navigating. It was worth the effort. I have always found poetry to be the hardest writing form to master, and I was very impressed with your product.

8/22/05, 7:48 AM  
Blogger Wade Rankin said...

Ms. Seidel,

Your comment came in while I was writing that last comment of mine. It's the first day of school for us, and I don't have enough time to really respond, but, for now let me just thank you for taking the time to chime in. The reasonableness of your words will hopefully help us keep a constructive dialog going here and elsewhere. Let's keep this going.

8/22/05, 7:54 AM  
Anonymous jypsy said...

Mr. Rankin,

No problem with your misspelling of my (nick)name. I appreciate your having taken the time to acknowledge & correct an honest (though natural & easy to make) mistake. I appreciate even more the time you've taken to acknowledge that there are positions & opinions coming out of the autistic community that the autism community (you specifically name "anti-thimerosal/biomedical advocates") could possibly want to learn from. The comments my link pointed you to were more ABA related because, here in Canada, the ABA industry is a stronger force than the anti-thimerosal/biomedical industry/advocacy with parents. Here ABA is being touted as the "only scientifically proven medically necessary treatment" for autistics (although they couldn't prove that case at the Canadian Supreme Court). The language being used to describe autistics who are "untreated" (by ABA) such as my son (whose successes are highlighted in that link) is exactly what your post touches on. In my experience you could have just as well put "autism advocates" where you put "anti-thimerosal/biomedical advocates" - "Members of the neurodiversity community know that same pain, but they seem to feel it is caused as often by the actions or words of anti-thimerosal/biomedical advocates as much as it is by unfeeling members of the general public."

I'd also like to echo Kathleen's comments - "I especially appreciate your willingness to actually read through the things that I've written before coming to any conclusions about what you might think I've said." It is especially nice for me to see someone willing to stick to the facts - even if you disagree with everything she says you can only do that *after* you know what it is she has said and if you can present your opposition to her position as well (as factually, as logically, etc) as she states her position, without personal attacks and mud slinging, there's no reason why we won't hear what you have to say and consider your position with the same respect.

My son does not express himself the way the teenager who owns the blog “Thoughts of a High Functioning Autistic Teen" does, either verbally or in text. His level and means of communication however do not reflect on his level of intelligence or on his quality of life. The acceptance, accommodations and opportunities he's been given have made him the happy, healthy, well adjusted & respected autistic he is today.

Thanx for your respectful discussion.

8/22/05, 1:58 PM  
Anonymous Anonymous said...

This feels like déjà vu all over again. I’m remembering a thread from a decade ago. ‘Questions and Confessions’ I believe was the subject header of the thread. In which I hit the wrong button in reply, and instead of sending to an individual, oops, it went to a whole group of people. They were all very nice, I remember. Given what I had said…

Somebody had asked if anyone ever got frustrated, if anyone ever felt that there wasn’t any bond at all. With the people in the newly discovered internet autism community. And I vented all of my frustrations, and disparaged the whole internet autistic community. Well, I’d just met my first ever fellow aspie in real life, and then had her go poof (dropped any and all further contact with no explanation as to why), which I’m told is typical aspie behavior and to be expected and accepted. It angered me nonetheless. There is much that is said in the community that has always angered me. Perhaps I’m looking at this from a somewhat distorted perspective, but what I see when I look is very often, amongst the neurologically atypical (NAT) community the same intolerance and disdain toward those on the other side that they accuse NTs of.

Perhaps there is a great deal of bitterness in that I sometimes almost feel as though the same herd mentality that causes NTs to look askance at aspies is at play on the other side. It seems to be an attitude not just of ‘we are different’, but of ‘we are better.’ I’ve never heard anyone actually say this. But I’ve seen the disdain toward those not like themselves—on both sides. Plenty of it. I spoke once with a milato who expressed very similar feelings.

I know that there is, or was at one time, a similar type of movement taking place among deaf people, and parents of deaf children. People who feel that any attempt at a fix will deprive their children of the ‘deaf culture’. And I know that I must tread very carefully here, so suffice it to say that I don’t understand this sort of attitude. It would be as though there were people refusing to put eyeglasses on their children, because they felt that having blurry vision was somehow a worthwhile experience, a worthwhile way to go thru life. As if they felt that the parents who put eyeglasses on their children did so because they didn’t love their children the way they are. I’ve been told that this is not a good analogy, but it seems like a fine analogy to me.

I am undiagnosed. Perhaps this means that I can’t understand what those more solidly on the spectrum experience. Let me say that I’ve felt anger toward both sides. I know what it is like to sit at the lunch table in high school, the only child not sitting with friends, the only child alone, and to know that this isn’t normal, and to know that others are whispering about how abnormal it is. I know the anger of reading a Sunday magazine essay about a boy in NY state who was told that he couldn’t be in the gifted program any longer because “he’s just too quiet.” And I know the anger of hearing my teenager tell me that her friends parents don’t like her. Because, she thinks, they think she is too quiet and it’s creepy.

When I first encountered the autistic community online I was struck by the amount of pride. What also stuck me tho was the complete lack of anyone, ever, who had anything bad to say about it. You’d have thought it was all candy and roses. You’d have thought a person couldn’t be luckier than to be born autistic, were they to be born into royalty or were they to hit the super lotto jackpot. To me, it seems, in some sense, kind of like being proud of being near sighted.

I understand that it is as much the reaction of NTs to aspies that causes this pain as it is the disorder itself. I am, however, very tired of having to catch myself every time I use the word ‘disorder’. Every time I refer to something being ‘wrong’.

When I was eight, I knew I was different. I also knew this—that there was something WRONG with me. I’m sorry if this offends anyone. There is something wrong with my eyes, too. It doesn’t offend anyone to hear that I’ve taken measures to correct that.

When my child was an infant, for the first three months of her life, she screamed. She was not colic by any standard definition of the term. Colically babies cry for a few hours each evening. They don’t scream as tho someone had stuck a fork into them every waking moment. I know that normal is just a setting on your clothes drier, but also understand this: by no stretch of my imagination can I view a child who screams the way she did as ‘normal’. By no stretch of my imagination can I view a child who who would routinely go a week to ten days without a bm as ‘normal’. Perhaps I could if it were not for the fact that she did manage to communicate her obvious discomfort. I don’t think I misunderstood. I viewed her as sick. This does not mean I loved her less.

Yes, I believe that there is a genetic componetent to all of this. When I was eleven, I first learned of autism. I knew that I couldn’t be autistic, but at the same time, I knew, without any doubt in my mind, at age eleven, that whatever was wrong with me, it was somehow like autism, or related to autism.

Now my teenagere is sixteen. A year ago, she came to me and told me she thought she had lead poisoning and when I told her it was unlikely, she told me “well then, I think I might have mercury poisoning.”

You and I and everyone commenting on this blog may find it easy to say we’re fine, we don’t need fixing. But there are children further down (please forgive my choice of the word ‘down’) on the spectrum who are smearing feces on bathroom walls. I don’t believe that they are fine.

When you know that you are an aspie but yet you haven’t been diagnosed, sure, one develops an ability to accept oneself, to not always follow the crowd like a lemming, and I won’t deny that this can be seen as a good thing, as a strong and positive trait. However, even given all of that, I’m ready to at least consider a magic pill, if it’s presented to me. I already have actually, when I began vitamin supplements.

And I understand that there is something to be said for self acceptance. To some degree. I have a titanium implant in my head, all because I was unhappy with the appearance of my teeth when I was nineteen, and I had the bad fortune (or perhaps my own folly was the cause) of getting some really fooked up cosmetic dentistry done by a really bad dentist, and now I have some metal in my head that I’m assured won’t harm me, but then, I was assured that the original cosmetic work that was done was straightforward and harmless but it’s become obvious that that wasn’t the case. And now I’m wondering what medical harm I might have done to myself, simply because I wasn’t willing to just accept myself. Which is all my husband ever asked me to do, as he’s recently been reminding me. Accept myself.

But I also understand, from this experience, that there is such a thing as malpractice. And I understand that there are people who will lie and deceive.

Which brings me to my final point, which is this. Perhaps I am merely angry that they can’t see the same behavior I do in the public healthcare and pharmaceutical bureaucracies, and be suspicious. Perhaps I am merely angry that they aren’t angry.

Once again, I will probably hit the ‘send’ button and then wish I’d spent a few moments, taken a few deep breaths, thought about it some more. But oh well. Thanks for listening to me vent…

Robin Nemeth
(Nogggin)

8/22/05, 4:33 PM  
Blogger Wade Rankin said...

I am truly overwhelmed by the response to this post. I really want to respond to the latest comments, but it's going to take a little more time than I can give it tonight. (I'm in the middle of dealing with a school system that still seems to think the answer to educating kids with ASD is to pay lip service to IDEA and then find creative ways to segregate them in a "resource room" where they won't be disruptive. They may find out how disruptive angry parents can be.)

8/22/05, 8:23 PM  
Anonymous Bonnie Ventura said...

Regarding the comparison of autism to nearsightedness, autism isn't simply a lack or deficit to be corrected: it is a personality type that has both positive and negative aspects.

As an extremely nearsighted Aspie who runs one of those pride sites where the negative aspects aren't discussed, I can tell you that there is a huge difference in society's attitudes toward autism and myopia. A nearsighted person is not considered weird or undesirable. There aren't any "nearsightedness awareness" campaigns in the media, telling us what a burden the nearsighted are on society, how disordered and defective the nearsighted are, and that a prenatal test should be developed so that all nearsighted babies can be aborted.

Autistic pride advocates are not denying the existence of difficulties associated with autism. Rather, we are trying to refute society's perception that we are nothing but a collection of difficulties, that there is nothing worthwhile about our existence. This is not just an abstract or hypothetical debate. Autistic teens and young adults are committing suicide every day because our society teaches them that they are severely mentally impaired, that they have no positive characteristics, and that they have no hope for a productive life. The United States government is funding research that is expected to lead to a prenatal test within 10 years, as discussed in this MSNBC.com article: http://www.msnbc.msn.com/id/7013251

As I see it, the autistic community has two choices: either we develop a cohesive minority culture and pride in our identity, or, in the very near future, people like us will no longer exist.

8/25/05, 7:56 AM  
Blogger Kev said...

Hi Wade,

Its good to see this blog and this post. I've briefly chatted to Ginger via email and hope to continue that conversation when our respective situations are calmer but I had to comment on this very positive post.

Where you are now and where Ginger is now is exactly where I was a year and a bit ago. We used Homeopathy and believed the DTP jab had injured Megan. Then we realised that these things weren't really helping Megan and that these beliefs were only really perpetuating a negative set of beliefs about autism in general and Megan in particular. We got increasingly annoyed with references to autism as poisoning or a disease because it concentrated solely on one very small aspect of Megans life as an autistic and didn't even fairly and truly represent even that very small part.

Brett above makes what I consider to eb one of the cardinal misunderstandings regarding Neurodiversity:

While I do adhere somewhat to the neurodiversity claim, I do not believe that as parents we should just live with it.

'it' I would assume being some of the things that cause an autisitc pain and/or trouble? Neither does the Neurodiversity movement. My daughter undergoes speech therapy. To leave her unable to communicate with NT's would be inhumane. There is, therfore a large difference between intervention and cure.

The 'curebie' movement has, in my opinion, reached a stage where the comorbidities of autism have become interchangable with the diagnosis of autism. I can treat my daughters lack of speech but she will still be autistic. You can remove the metal from your son's body if you believe its there but if he was autistic then he still will be.

You talk about removing the obstacles that impede your son and what I hear is almost exactly my own thoughts. But I don't agree that those obstacles need such radical, untested and potentially (as now sadly know) fatal consequences. Kids need room to develop. And autistic kids do develop. Kathleen can provide the source but its a fact that 90% of kids on the spectrum speak before the age of 10.

Lastly, its about respect. A lot of people aren't as prepared to consider alternatives as you and Ginger are. Some of the comments that Kathleen, AutismDiva and myself have recieved either on our blogs or in our private email would make your hair stand on end. But worse than this is the attitude they convey regarding autism itself.

Lenny Schafer refuses to believe that anyone who can speak is autistic. JB Handley refuses to believe that autism is anything but mercury poisoning. Lujene Clarke said to me that I had psychological problems because I admitted I had adult relatives on the spectrum.

The recent death of an autistic child due to a heart attack during chelation sent the Evidence of Harm list into meltdown. The participants were falling over themselves to comiserate with the Doctor concerned and the family as well as worry about how it might make chelation look. It wasn't until nearly 25 messages into that thread that one person (ironically JB Handley) commented on how said it was for the poor boy himself. A lot of us feel, with some justification I think, that for a lot of parents who are deeper into these cults than you Wade that 'better dead than autistic' is acceptable.

My daughter is autistic and always will be autistic. It behooves me in that case to campaign hard for the acceptance of people like her to be free to be who they want to be. Likewise, if she turned round to me in 20 years time and said 'Dad I want a cure' then I would move heaven and earth to get her that cure. I am hoping though that by raising her to be proud of who she is and at the same time, removing comorbid obstacles she will be able to be comfortable enough with her autism to not want that which helps to make her who she is.

8/25/05, 8:21 AM  
Blogger Wade Rankin said...

Due to time-budgeting concerns, I promised myself I would no longer reply to each individual comment, but I have to make an exception for Kev. For those who are not familiar with Kev, he can be found at his own fine blog or commenting on various sites. Although we rarely agree on the substantive issues of causation and treatment, I respect Kev tremendously for his intelligence and his demeanor. His posts always challenge me, but never offend me.

I am somewhat amused by Kev’s reference to “parents who are deeper into these cults.” I don’t know, my wife and I are pretty deep into the movement against thimerosal and promoting biomedical treatments, but we don’t consider it a cult. I may disagree with J.B. Handley, Lynn Redwood, the Clarks, or Lenny Schafer on semantics, but I stand with them on the essentials and believe they are providing an enormous public service. Nevertheless, I would agree that there are some parents who may exercise a little too much missionary zeal, and if you want to call them “cultists,” I suppose that might fit.

Of course, I have seen some terribly hateful things said to and about those of us who take stands against mercury in vaccines or who promote biomedical interventions (for the time being, at least, I think I’ll use your word instead of “cure”). In fairness, very few of the offensive comments directed at me seem to have come from the neurodiversity movement.

I believe we can all do better if we tone down the rhetoric and rethink our semantics. What can changing the words we use accomplish? Most of us use autism or ASD to describe a constellation of symptoms or clinical indications we see in our children. We use the descriptive terms that the experts give us at the same time they give us a prescription for Ritalin, the number for a support group, and advice to lock our kids away in a “special” environment. But the more I think about it, I think we may just be right to draw a distinction between traditionally defined autism and this “unique form of mercury poisoning.”

Obviously, the real move to change the semantics needs to come from the scientific community. In the meantime, those of us who are interested lay people need to back off and listen to ideas with which we may not agree. As Kev says, “it’s about respect.” Or to quote a fine adage I’ve seen Kev use elsewhere, “good manners cost nothing.” Any change in how scientists and physicians define autism or mercury poisoning will do nothing unless we are willing to redefine autism in our own hearts and minds.

In my follow-up post, I discuss some of the reasons I folks on “my side” may have react the way they do think (and those thoughts are only an opinion; I speak for nobody but myself). Similar reasons probably explain some of the hostility on the other side. I hope that if we really start listening to one another, we may find out we’re not that far apart in what we believe.

Finally, although this may not be the best place to say it, I feel the need to address the tragic death of Abubakar Tariq Nadama, the five-year old child to whom Kev refers. That event needs to be considered in a far more important light than worrying about negative PR. Chelation is a medical procedure and, as parents, we must assess the risk of the procedure against its potential benefits. Every doctor I know of that was using IV-EDTA is now ceasing that therapy until it can be determined what went wrong. On first blush, the most likely cause of death seems to be an anaphylactic reaction to the EDTA. If that turns out to be the case, the reaction may not have been foreseeable, but the death could have been possibly prevented by performing the procedure on an out-patient basis at a hospital rather than in an office. I believe Mr. Handley (and J.B. was sought out by the press, not the other way around) said the same thing in public comments he made. The horrific loss of a child underlines the need to conduct real clinical studies of the methods we are using, and to get hospitals on board with those studies so we can minimize risks. In the meantime, let’s all keep the entire Nadama family in our thoughts and prayers.

8/25/05, 1:20 PM  
Blogger Typhona said...

jypsy! You dont know me but I have been visiting your site for about 2 yrs and as of late cannot seem to be able to get to your homepage. We loved your site because of your insight and viewpoints. I was just wondering if I could get a link to your hompage. (the link you left for the senate worked but there wasnt a link to your homepage from that one. glad to see your still around

8/26/05, 11:19 AM  
Blogger Typhona said...

Im terribly sorry for that last post being so off topic

8/26/05, 1:18 PM  
Anonymous Clay said...

Hi Wade,
I hope that you and your family are safe and well away from the ravages of Katrina. Been thinking about you.

8/29/05, 12:50 PM  
Blogger Wade Rankin said...

Thank you so much for that expression of concern, Clay. It means a great deal to me. My family and I are safe and well, having evacuated well away from home. We're not sure what we'll find when we get back, but that is not the most important thing. We did the right thing and stayed safe. A lot of people have lost everything and some were -- and still are -- in harm's way. Let's keep those folks in our hearts and prayers.

8/29/05, 1:42 PM  
Anonymous Clay said...

Umm, Wade?
Are you allright? Have you tried to return yet to see what was left? I understand, you're probably much too busy to check your blog, or too heartsick to try to deal with such a relatively unimportant thing, but I hope you know that we care, and are hopeful that you and your family are making it through this allright. Do you expect to return to New Orleans any time soon?

9/8/05, 9:03 PM  
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