Tuesday, September 05, 2006

YOU MIGHT BE A CUREBIE IF . . .

Of all the “fighting words” in any discussion about ASD, none arouses such passion as “cure.” The problem is, no two of us really share a common definition of the word. So it’s a word I don’t often use, but it’s a word I believe in.

For me, the effort to “cure” my son means that I want to see every impediment removed that might otherwise prevent him from achieving full independence in a world that is often unfriendly to neurotypical and autistic alike. I believe that many of his deficits (oops, there’s another “fighting word”) result from physical conditions that can be ameliorated. The point of this post is not to debate the validity of that belief, but rather to explore the politics of being a “curebie.”

“Curebie” is the word that some critics use to describe people like me. I suspect it is meant as a term of derision, but I refuse to see it that way; I guess I am embracing my curiebiedom.

In any event, a blogger who refers to herself as the Autistic Bitch from Hell (or abfh), has given us a definition of curebieism that frankly confuses me. I no longer know if I’m a curebie or not.
While I was reading blogs yesterday, I came across a post by a worried father who believed that autistic activists were opposed to any attempt to improve an autistic child's health. The father wrote that he was not trying to cure his daughter’s autism, but he was afraid that when she grew older, she might hate him for giving her vitamins and a healthy diet.

. . .

Then I started to wonder if his misconception about autistic activists came from reading rants against “curebies,” which usually have no definition of the word. I decided that it would be useful to clarify just what goes into the curebie mindset and why conscientious parents who care about their children's health and well-being are not curebies.

The defining characteristic of a curebie is a fanatical desperation to destroy a child’s autistic traits in their entirety. Autism takes on a separate and distinct identity in the curebie mind; it is personified as a demonic foe that must be defeated at all costs. The child ceases to be seen as a sentient person and instead is treated as if he were a battleground for a cosmic struggle between good and evil. Jonathan Shestack, co-founder and president of Cure Autism Now, exemplified this mindset when he wrote that autism parents do not have a child but “a shell, a ghost of all the dreams and hopes you ever had.”

Well, I happen to disagree with the quote attributed to Mr. Shestack. My son is not some empty shell, and I have never particularly stopped to think about any particular dreams I had or have for him. My only hope for him has always been to find his own place in the world. His ASD seems to stand in the way of that, but it is not some inherently evil force. It is a problem: hopefully a solvable problem. So have I been living a lie? Am I not a curebie?

Some of the comments to abfh’s post add to my confusion. In particular, David Andrews and Joseph, both of whom I have long disagreed with on so many questions, each voiced disagreement with the seeming article of faith among some quarters that all curebies harbor a secret desire to kill our children. After that refreshing acknowledgment that we are not all monsters, Mr. Andrews had this to say:
. . .much as the more vocal ones from the ‘curebie’ groups have this dramatic way of looking at things, I’m not sure that Wade Rankin is the same as these others, and I'd say that most probably aren’t... just those more vociferous ones.

I certainly appreciate the fact that Mr. Andrews believes me to be somewhat reasonable, but the key to understanding the situation lies in the phrase “most probably aren’t,” although my understanding may not truly be what Mr. Andrews intended. He probably only meant to convey that all curebies don’t fantasize about killing our children (which, in fairness to abfh, is apparently conceded as she edited her post to correct what she referred to as a “generalization” by noting that only “some” curebie parents feel that way. I certainly don’t want to open up the debate as to who may actually have such thoughts, as it puts me in the position of speaking for another. (Personally, I cannot conceive of any justification for killing one's child.) What I found noteworthy in Mr. Andrews’ comment, whether he meant it this way, is the implicit acknowledgment that there is not one uniform set of values and opinions held by curebies.

Whether any of us like it or not, we all find ourselves divided into subcommunities of what I have been calling the “greater autism community.” That doesn’t mean that all those we think of as being in the “neurodiversity” camp share the same exact opinions, nor does it mean that all “curebies” take the same approach to every issue. Each of us holds differing opinions as to the nature of autism and the correct response thereto, those opinions being formed primarily by the experiences of our individual families. Yet we find ourselves grouped into general subcommunities because Kevin Leitch finds he has more in common with Kathleen Seidel than he does me, and I have more in common with Erik Nanstiel than I do Kev and Kathleen.

That is not to say that I feel comfortable sharing a subcommunity with all curebies. I have done my fair share of wincing in the last year or so, and I feel reasonably sure that some members of the neurodiversity subcommunity have felt likewise about comments from within their group. But the fact that I have those occasional feelings, or that I sometimes avoid using the word “cure,” does not really make me less of a curebie. I know because abfh has given me the ultimate answer:
Here’s a quick test for any parent who may still be unsure of what curebie-ism is. If you care whether your autistic child thinks you are a curebie—you’re not one.

What is raised here is an ethical question that is impossible to answer with certainty. As my friend, Ginger, once said, in response to a question asking who we were to decide that our children needed curing:
Who are we? We are their parents.

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

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

Although I hope my son approves of our response to his ASD (and I believe he does and he will), that is not something I spend a lot of time worried about. This is how I’ve answered that question before:
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.

Wade Rankin
Curebie

15 Comments:

Blogger María Luján said...

Thank you for posting about this topic.
I agree with you wholeheartly about the fact that we are all different in our views of autism and our thoughts about the roots of. I also am convinced that our personal experience – the overall one, including the personality of the autistic child, the struggles in behavior/health he or she must face and the clinical analysis results- conditions, even unconsciously, our approach about what autism particularly is in each case. It is like to keep in mind continously the overall bag of the information of your child in the sense of comparing reported situations or scientific studies with the situations you have faced, even if they have been solved.
I do believe that several words are used in general with a tone of dispise “curebie”, “them”, “those parents”, even when the information needed to have something related to a conclusion is practically inexistent, because at the best of my knowledge, there are not public discussion of private clinical data because of privacy and I share this politics about my son´s privacy. Once and again, the fact that some subgroup can have certain style and certain approach does not imply that all the biomedical community share the style/tone/conclussions/analysis or even something. Each of us have a personal idea about a lot of issues related to autism and have also a personal style. PERSONAL from presenting an idea, to defend the idea to use some style or tone to answer criticisms of the idea or even plain personal attack . I think that the emphasis in the generalization fortunately made Joseph to warn about this fact. But the overstatement continues, unfortunately.

Wade this is really important

Well, I happen to disagree with the quote attributed to Mr. Shestack. My son is not some empty shell, and I have never particularly stopped to think about any particular dreams I had or have for him. My only hope for him has always been to find his own place in the world. His ASD seems to stand in the way of that, but it is not some inherently evil force.

I would not change a word, honestly. For me, ASD generated to my son several problems to live with ,of different levels: communicational, emotional, educational, social and even politicals in terms of support of autistic people. But not spiritual. I would strongly react to anyone saying that ASD makes my son less worth of the consideration that all human beings deserve because of their existence.

I feel confortable with several people of the ND camp, ALSO. However , and even when I have found more in common with several points of the ND that certain subgroups of thinking of biomedical approach, this fact does not change my view to the ND group of ideas in general and , based in my personal experience, of the strong need for my son of a different approach of the conditions I can treat with the available science/medicine. However, I consider that there is probably brain structural facts that are not “treatable”. But the overall health , nutrition and correct physiology impact in the proper function of brain, even if I accept that is structurally different, is being more and more studied and they are “treatable”. And for me, autism IN MY SON is related to the functioning of his body as a system of sytems in general more than structurally predetermined facts.

To say that many parents doing biomedical are “curebies” in the field of “curebeism” is the other side of the mirror that to say that many parents in the neurodiversity group say “do nothing but watch and accept” in the field of “nothing-ism”. I have read very very few parents thinking one or the other.

Would his probably structurally different brain “curable”, probably not. Would his health conditions curable? Probably yes, at least some/many of them. Would this implies that autism is curable? At some point, I am not worried in terms of this, but in terms of life´s quality of my autistic son under his own terms. His genetics will be with him all his life. But the results of epigenetics and environment can be properly modulated to optimize his physiology. Would this implies that autism is treatable? Because I see many or all the medical conditions related to his autistic genetics I would say YES. And no, I do not think that ASD in his individual presentation in my son, is another way of being.

I do not know at this point if I am a curebie or not, honesty. Probably I am a “treatabie”.

And yes, I decided because I (we) am (are) his parents. And we must live with every decision about him, with no reinforcements or applauses. And we do.

I want for my son all the opportunities that life can bring. I want for him the pleasures of the analysis of the nature and life, of the flies of the butterflies, of the incredible importance of the friendship. I want for him the ability to be on his feet up alone, doing his own decisions and with all the tools to do them. I want for him an independent life, a job, love and happiness. I want for him the adulthood in the future with all the implicacies of it- including the responsibility of negotiation- and I hope to help him to overcome every obstacle, if he request my help.

And the only opinion I care about me in all this process is his opinion, when he is able to give me it. However, in a final reading, I must be confident in my own ethics and analysis and in my profound belief that we are doing the best to optimize his future life´s quality as the best autistic human being he can be.

9/6/06, 11:13 AM  
Blogger Wade Rankin said...

To amplify what María wrote, I look at "cure" as being a process rather than a result. I cannot expect to change anything that is genetically ingrained in my son, but I do expect to ameliorate any problems caused by the altered gene expression resulting from environmental insults.

9/6/06, 8:22 PM  
Blogger Ian Parker said...

I don't expect or want to change my daughter's underlying genetically based neurology. But as I would argue here, I believe that neurodiversity is the result of a genetic expression that is a prerequisite for ASD rather than the cause of ASD. Based on the above, I guess that makes me a curebie too.

9/6/06, 9:29 PM  
Anonymous Anonymous said...

My daughter's autism was not genetic expression... she was born NORMAL. Met every milestone and was measureably perfect until her 15 month shots.

Her only genetic abnormality (which we tested) is two snips on the MTHFR gene. Something I have also...which impairs the glutathione function to a degree. In fact, my glutathione levels are now LOWER than my daughter's! (She's being treated, I am not)

If we're genetically that similar... and since I am not on the spectrum, then the only factor is the poison injected into my daughter when she was 15 months old...

Erik

9/7/06, 6:53 AM  
Blogger María Luján said...

Hi Erik
When my son was first diagnosed, and having faced noticeable changes after vaccinations, I thought the same than you for a while. However, further research on the topic made me look at the overall situation different.I wonder if you are interested about. What I want to tell you in advance is that I respect every parent ideas and decissions such as I ask for the same.Only asking you if you would be interested on my own ideas and information with which I reconsidered the overall approach.
But perhaps you are not interested at all- and I respect this also. Perhaps you can be interested on private discussion about- and you can find my e-mail if you are interested about published citations for example of genetic susceptibility to HM- not generally studied in the field of ASD.
Anyway, I hope the best for you and your daughter.
Thank you in advance.
MAría Luján

9/7/06, 7:58 AM  
Blogger Wade Rankin said...

María,

If I am reading Erik's comment correctly, I don't think he disputes the genetic predisposition his daughter had to autism. He believes that the manifestation of his daughter's ASD, however, may be attributed solely to the environmental insult of a vaccination, that is, she would have been asymptomatic without the insult. (Correct me if I'm wrong in restating your opinion, Erik.) The seeming difference may be in the way we are using the term "genetic expression."

9/7/06, 8:14 AM  
Blogger Joseph said...

Erik's argument is flawed:


My daughter's autism was not genetic expression... she was born NORMAL. Met every milestone and was measureably perfect until her 15 month shots.

Her only genetic abnormality (which we tested) is two snips on the MTHFR gene. Something I have also...which impairs the glutathione function to a degree. In fact, my glutathione levels are now LOWER than my daughter's! (She's being treated, I am not)

If we're genetically that similar... and since I am not on the spectrum, then the only factor is the poison injected into my daughter when she was 15 months old...


First of all, it assumes that if a child meets early mildstones, the child was meant to be normal for life, unless something bad happens. This is most definitely not true. Rett syndrome has a period of normal development, as do other conditions with regressive onset.

Second, Erik says that because genetic tests did not find any particular known syndrome, then there's no genetic cause for his daughter's condition. This assumes perfect knowledge of human genetics and expression, which is unavailable at the moment.

9/8/06, 12:45 PM  
Blogger Randy said...

I think it's important to realize that we all want the same things for our children that the parents of neurotypical kids want for theirs--for them to be as happy, healthy, educated, and independent as possible. The causes of ASD, and the proper responses, will be debated until definitive answers emerge, and those debates are fitting and proper. Until those answers emerge, however, I will respect parents who pursue those ends of happiness, health, education, and independence through any methods that are scientifically legitimate, legal, and non-harmful, whether those methods are biomedical, ABA, special schools, or whatever. I'll admit that I don't know what causes autism or whether or how it can be cured. But I do know that we as parents can help our children achieve their potential.

9/8/06, 12:58 PM  
Blogger Fore Sam said...

Joseph;
If Erik has used flawed logic in figuring out that his daughter's condition is not genetic, you should have no trouble parading millions of 75 year old and older autistics on stage to prove your point.
You've been leaving yourself wide open lately to have your position shoved down your throat. You won't win mole of the month from Eli Lilly this month.

9/8/06, 5:48 PM  
Blogger Joseph said...

you should have no trouble parading millions of 75 year old and older autistics on stage to prove your point.

Again with the 75 year old autistics. You and Sue are really the last soldiers of the thimerosal hypothesis and you have but two weapons left: The Danish studies and the 75 year old autistics.

Let's say someone wanted to go out of his way to satisfy John Best Jr. and screen a large random sample of 75 year olds for autism (both in the institutionalized and non-institutionalized population). And let's say they did find ASD at a rate of 1% or more, which is the expected finding, assuming normal life expectancy. What would happen then? Obviously, John Best Jr. would claim that these are people with early Alzheimer's (because Alzheimer's is oh so similar to autism), or that they must have Fragile-X, or that the study is corrupt science by Big Pharma.

I'll do you one better John. Shah, Holmes & Wing (1982) - that's 1982 - screened adult mentally handicapped patients in a long-stay hospital. They found that 38% had behaviors consistent with autism, which gives a prevalence of PDD with MR of about 38 in 10,000. At the time, your cut-off would have been 51 years of age, not 75. Is it likely that Shah, Homes & Wing did not notice that no one over 51 fulfilled their criteria or forgot to report it? Occam's razor says no, which would make you wrong, John.

9/8/06, 7:32 PM  
Blogger Fore Sam said...

Joe;
Did they have any 51 year olds or not? Behaviors consistent with autism don't equal autism. Is Nomar Garciaparra autistic? (He's a baseball player) His behaviors would say so according to you. That's a big leap in logic, even for you, to say behaviors consistent with autism equals MR and PDD. You forgot to add in something about seizures like you do when you "spin" your stories about statistics.
THere's only a handful of you who aren't helping yourselves with the knowledge about mercury and how to cure it but you do make lots of noise, just like empty buckets. I think you'd be happier if you tried some ALA. Then, maybe you could take a break from knocking anyone who helps autistic children and spend a few weeks at the beach and relax. You'd come back refreshed with better arguments.

9/8/06, 9:18 PM  
Blogger SquareGirl said...

Wade, this post is significant and lovely and forgive me for hiding my true response in a comment to an old post, but that is my extremely shy nature...

Once upon a time over 30 years ago, I was officailly diagnosed as autistic. Made so by my "unavailable mother who paid oo much attention the baby" this is my true experience...

I was diagnosed on the spectrum over 30 years ago, married a man who didn't talk bfore he was five and currently work with children with a diagnosis of ASD for over 13 years...

Have I seen "recovered" children? Absolutely!!! Do I believe that children can be cured/ recovered? Of course! I've witnessed it.

Do I think autism is a new way of living?? Absolutely. We are far from all the answers.

Love and Peace,SquareGirl

9/26/06, 1:52 AM  
Blogger Clay said...

Wade,

I have wandered over to your blog from Ginger's blog. I spent all last night and part of tonight pouring over her entire blog. She hasn't posted since June. I hope she hasn't quit. The point I would like to make is that I am thankful to people like you and her who are willing to share their experiences. It is helping me to understand things a whole lot more!

Our daughter, Edith Rose, was diagnosed toward the end of the school year last year with autism (mild to medium range), adhd - impulsive disorder, and quite possibly bi-polarism (the psychologist isn't 100 percent sure of that yet, but is leaning in that direction).

Edith's case is complicated, since Autism and the other psychological issues aren't her only problem. She has epilepsy and we have been in and out of the hospital with her due to prolonged siezures, quite a few taking over an hour to stop.

I don't know whether or not any of her vaccinations caused her autism. We tend to lean more toward the encephalitus she contracted at 18 months. Before that viral infection of the brain, Edith had had a few, of what doctors refered to as "febrile seizures". After the encephalitis, Edith began having prolonged seizures and was becoming no stranger to the hospital's PICU.

Our first neurologist never could tell us what was wrong with Edith, and we soon began noticing some disturbing behavior coming from her. Namely, banging her head, biting herself, rocking, spending most of the time crying and pitching tantrums, some of these tantrums have occured for no apparent reason, out of the middle of nowhere and have been extremely violent and long in duration ending in her physical collapse.

We could no longer take her anywhere in public due to her trying to run wild through out the store, or pitching tantrums and screaming. We haven't been to church in a long, long time.

We brought our concerns up numerous times with the neurologist but he kept ignoring it. We thought it was all due to side effects to the anti-seizure medicine she was taking. We went through several different types of medicine but the behavior never really got better.

We managed to ditch the neurologist and I was lucky enought to get refered to the Children's Hospital in Little Rock, Arkansas. I'm in the Air Force and am fortunate to have had some good cooperation between the base clinic and our insurance company. They ran some tests on her and within 20 minutes informed my wife and I that Edith had epilepsy. They showed us an educational film and counseled us. Wow what a difference! The mystery over why Edith was having seizures at least had a name, epilepsy, and we were taught how to identify the different types of seizures, Edith has had every type, with absence and complex partial the most.

Needless to say the mystery over Edith wasn't all solved. Her troublesome behavior continued. The next neurologist kept recommending child rearing books for us to read (which was infuriating since we have a 21 year old son and an 18 year old daughter so we know a thing or two about raising children).

To make a long story short, during one fateful hospital stay, where they wanted to run some evaluation tests on Edith, she was in full behavior oddity form. Some nurses identified that something was seriously wrong with Edith, beyond just bad behavior. Much to our neurologist's chagrin, the hospital sent a psychiatrist over to visit us.

After that I managed to get her seen by a psychologist, her diagnosis opened up doors for us and explained Edith's behavior more. She now sees a psychiatrist as well.

Edith is 4 + years old. For much of her life, we have been living blindly in the storm of her internal torment not having a clue as to what was going on or what to do. We have been stared at by other adults in public more times than I can count. Last year we had to cut our Christmas visit to my parent's home in Florida due to Edith's violent erratic behavior.

Edith seems to be doing better now. Her behavior has calmed down quite a bit since taking Risperdol. We tried some other medications like Ritalin but they just made her more violent and hyper.

It has been a long time now since she bit herself or us. She will still throw tantrums and tip over chairs, hit the TV or throw things and or hit us, when she is told no, but, it's not as frequent and a lot less violent.

Edith is capable of looking at us in the eyes, she is affectionate and we can hug her. Sometimes she doesn't look us in the eyes, and sometimes she doesn't like to be hugged, but this is rare.

She does have some sensitivity issues though. When we brush her hair, she screams as if we are ripping her hair out. After her last siezure, bath time has become a little problematic.

Edith hasn't had any violent rages in a while, last one was in August at KMart, but she still doesn't handle the word no, or any variation thereof very well, and she has absolutely no patience.

I get nervous with her around other kids because she either hits them or hugs and kisses them without warning. She seems to want to fit in, but doesn't know how and will watch other kids and run around them laughing as opposed to actually playing with them.

She is obsessed with Burger King (why couldn't it be Arbys?) and Chucky Cheese, and jumping on the trampoline. She waits until I get home from work and then follows me around demanding that I go "jumping with her", as she won't jump by herself. When I do give in I find that at my age I simply don't have the energy to jump with her non stop for hours on end!

Sorry for the long rant. I'm not very good at summarizing.

Anyway, I am with you and Ginger on doing whatever it takes to help our children in any way we can, to live the best quality life possible.

I understand how those with Autism aren't comfortable with any one wanting to change them via a cure, and I'm not sure that there is any such thing as a "cure", or even if there was one, if that would fundamentally "change" the person so much beyond removing obstacles that the person has had to face.

It is hard for me to believe that a person with autism who has to make and follow detailed checklists to function throughout the day would miss that if they were "cured" and no longer needed those lists. But then again what do I know?

I just know that anything that keeps Edith from crawling out of her skin and being able express herself and grow up to be independant and enjoy life to the fullest is what I am for. If that makes me a "curbie" then so be it!

Edith still isn't potty-trained, she can't dress herself and her speech is behind developmentally but she is receiving speech and occupational therapy beyond what is offered at pre-K, and a team of doctors and psychologists come to our home to help us.

I'm keeping the options of vitamins and that gluten-casen diet open, although I don't know if Edith would need those options. She does look at us and can express herself, albeit she is a bit behind speech skills typical for her age.

I've been approved by insurance for ABA, but again, I don't know if that will be needed for Edith or not. I don't want to traumatize her with too much therapy, nor do I want to not pursue what I should. It is scary as a parent with so many decisions to make and not being sure 100 percent about what is right.

Again, sorry for the long rant. Thanks again for your site.

10/11/06, 6:05 AM  
Blogger David N. Andrews MEd (12/ 2006) said...

Wade: "What I found noteworthy in Mr. Andrews’ comment, whether he meant it this way, is the implicit acknowledgment that there is not one uniform set of values and opinions held by curebies."

Depending on how the term 'cure' is (mis)applied, that's pretty much it. I hate to do a comparison like this, but - given JBJr's current hobby of posting as Kevin Leitch's daughter - well, chalk and cheese, you know....?!

Fact is that you - from what I have seen of you - would never do that, right? Ive never seen anything like that come from you, anyways.

Wade: "He probably only meant to convey that all curebies don’t fantasize about killing our children..."

Yep. My use of the term most probably aren't refers to the issue of really only knowing of your existence via the internet and therefore having limited knowledge (especially as compared to JBJr) of you and how you interact here. However, what I have seen of you on the net doesn't cause me the concern that he does with his hate-speech/writings.

Rather than trying to insinuate anything untoward about you, my choice of that phrase was based on my way of writing from observation... in essence, putting confidence limits on what I say (given the way the internet is, rather than the way that you could be away from here; again, not that I think you are... but reflecting that I have only a limited observation).

I hope that makes sense; I'm writing this at a time of serious tension (won't bore you with details, but there's a pretty imminent nasty coming up in my life, that none of my family are looking forward to).

10/30/06, 6:15 PM  
Blogger JC said...

I'm a curebie - we should think positive - for hundreds of years people thought the world was flat....
At the risk of sounding like a total nutter (which I'm not) I am using a 'turn off systemising' approach which has cured my Asperger tendency issues - unlearningasperger.blogspot.com. Very best, JC

6/9/07, 4:22 AM  

Post a Comment

Links to this post:

Create a Link

<< Home