9/06/2009

Into the Breach Once More: Operationalizing Neurodiversity Commitments to Human Rights

A friend of mine commented to a post below and it merits a larger discussion here.

What is neurodiversity from someone who believes in it?

I know, I've thought I had covered it fairly exhaustively, but it never hurts to go over it again, since it's constantly being inaccurately described and redefined by those who would eradicate autism(s) completely.

Part of the problem here is semantics. We aren't agreeing on operationalized definitions and are consequently not talking about the same things.

Part of the problem are the emotions on either side of the equation.

Part of the problem is that there are two different populations being represented as well: family members who are dealing with autism and the individuals who are autistic.

So, definitions seem required.

Definitions (got that; it's my definition, it's what I'm talking about. I've operationalized it and it means you need to base your discussion of it on that definition or you need to operationalize your definition so we know where we are talking about different things):
     
      Neurodiversity: all people, regardless of their disability, difference, issue, neurological wiring, have inherent value as human beings.

They are entitled to respect, dignity, and equal treatment before the law.

Marginalizing, minimizing and otherwise abusing people who are not "neurotypical" as defined by societal customs is morally and ethically wrong.

They are entitled to compassion and the right to make decisions about their own lives as they reach emancipation age. Autonomy should be respected. This does not mean permissiveness as a parent and doing nothing. We're talking about adults here, not children.

Onto children: as children grow and become able to understand their condition/disorder/disease that those deicisions that have been the purvue of the parents shifts as the child reaches emancipation to become the now adult's decisions. This recognizes that profound mental impairment will preclude an individual's ability to make all decisions. Those decisions should be made by the guardian with the individual's needs in mind and not the caregivers.

As neurodiversity on this site primarily deals with autism, let's operationalize that as well:

          Autism is a spectrum which is currently diagnosed through a cluster of behaviors. It involves a wide range of functional levels and impairments. There is a triad of typically recognized impairments in the social arena, in the communicative area, and in the range of interests and behaviors (as defined by the DSM-IV-TR). Neurologists now recognize that there are at least sixty different disease entities in persons meeting the requirements for autism (Coleman 2005). It is believed, by neurologists researching it to be primarily genetic in nature, and that most autisms are in place by birth. Environmental triggers are involved with in utero trauma that may either be causal in nature or worsen the severity. Researchers recognize the incompleteness of their knowledge regarding the cluster of behaviors and different neurological wirings that we currently call autisms.

This is the background I am viewing  autism from:

I do not consider, based on the preponderance of evidence available that autism is caused by vaccination (see Immunization Safety Review: Vaccines and Autism, http://www.nap.edu/catalog.php?record_id=10997#description).

However, as I have written before:

Just a reminder that I do believe that serious adverse reactions to vaccines do occur.
I believe that these should be taken seriously.

I believe that all possible research to minimize the risk should be done and that those who are at risk should NOT be vaccinated.

They should be protected by the herd immunity generated by the majority of people being vaccinated provides.

I believe that vaccination in itself should be seriously considered and the overall risk assessment should be weighed. Are the risks in general of vaccinating the population worse than the risks the disease itself would convey? Then don't use that vaccine.

Back to autism:

I do not consider autism to be fundamentally connected with "gut pain" and anytime someone refers to leaky gut, gut problems, etc, firstly, I am annoyed at the lack of clinical terminology (and when it's coming from a doctor, well, any credibility he might have had is gone). The rate of intestinal distress in autistic individuals is no greater than in the general population. Availability heuristic doesn't make something true.

However, if your child has intestinal issues and distress, it should be dealt with. Anyone arguing that people who believe in neurodiversity do not think medical issues should be treated is invoking the Full of Shit Law (new law).

Furthermore:

I have three children on the spectrum. I do not believe autism is "rosy" although I believe my Rosie is. I believe that my children are beautiful children who have issues, multitudinous and many, and that it is my job to help them with those issues to minimize the impact the issues have on their quality of life.

 There is a semantic distortion going on here if you believe that parents who support acceptance and appreciation (neurodiversity as operationalized above) means we don't try our damnedest to help our children achieve their potential, to eliminate self-injurious behaviors,  and to work towards functional behaviors that will help our children succeed.  Seriously, continuing that distortion is completely unacceptable and will lead me to believe you aren't interested in understanding different perspectives.

I will not allow such distortions of parents who choose to view autism as something other than the end of the world to go unresponded to. Show me one parent who supports neurodiversity who is not engaged in tireless effort to help their children do well. 

I do not deny that autism ranges from profound impairment to what appears to those on the outside as relatively minimal differences from the "NT."

I want you to think, though,  about the difference in self-esteem for those children with autism who are high functioning enough to hear, notice, and understand what's going on around them.

And there are plenty of those "recovered" kids according to many of the AoA parents who are still rushing around in a fevered desperation screaming about how the child had been stolen, taken, etc, and is damaged goods and consequently take them to every charlatan and quack out there, trying endless woo after woo to "recover" fully the children they lost. This isn't about the kid; it's about the parent.

Compare those kids and what they are subjected to to the higher functioning kids of parents who are not desperate, don't view their children as damaged goods, and recognize that improvement requires hard one-on-one daily cognitive behavioral intervention, working on building skill sets, getting them OT, PT, speech, etc, using medications when necessary, dietary alterations where allergies do exist, but doing it without that film of hysteria coating every action.

I have a child who isn't leaving home. He isn't. He'll be 20 this year and he will be with me by my side and in my home until I die. It's that or live with another family member or live in a group home. That's pretty much it. That's his future. I'm fortunate that we were able to eliminate all but the most minimal of self-injurious behaviors. I believe that is because we have created a safe environment for him where he feels loved, appreciated, and valued. He has a day center he attends where, with the exception of a couple of other disabled individuals who are occasionally bullying, he is safe and happy. I have dedicated my life to making his life as good a life as I could. That meant being with the school with him until his stroke and then homeschooling him for ten years and then finding a place where he can be happy, valued, and of service so that he has as much autonomy as he can.

I am not awash in desperation. I have not gone down every woo trail I can to frantically attempt a cure because there isn't one. It doesn't mean I haven't devoted thousands of hours to working with him, because I have. For well over a decade, I spent every waking moment with my children working with them because I know that no one else will have the level of commitment to their well-being as their father and I do. My daughters are higher functioning and their place is in the school system learning to navigate the larger world. I work within that system to give them the best outcome, but I never once abdicate my responsibility to them and for them and I continue to devote my effort and energy when they are home to helping them.

 I have treated my son with respect and appreciation for who is while working with him to help him achieve his potential. He is happy. He is loved. He is valued. And he has never once thought otherwise. That's my job. And I'm going to do my damnedest to make sure that the rest of the world learns to see him and my daughters the same way: valued, respected, appreciated and accepted.

16 comments:

Mom26children said...

Oh My Goodness,
We really do think alike.
I just commented to Craig, and I swear you would think I copied you...
Well, just goes to show...
"GREAT MINDS...." !!!

KWombles said...

:-) Absolutely! I finished writing this and then saw your comment. I love that we were writing at the same time the same things.

We'll keep on, too, reminding folks of what we stand for and believe, no matter how often they distort it. And we are stubborn enough that we'll either convince them or wear them out.

And we'll keep reaching out our hands in friendship to those who'd like to step away from the anger.

Man, I tell ya. I'd much rather find the good in life and appreciate the moments rather than dwell on mightabeens. Goes back to that explanatory style and temperament. It has to. It's got to be a function of differences in personality traits, coping styles to explain why some folks don't turn to bitterness and others do. Now the trick is to figure out how to help those who turn to bitterness (which by the way is the goal of positive psychology).

:-)

kathleen said...

I'm with you and Jeanette! Well done kim-well written...thanks.

davidbrown said...

"rate of intestinal distress in autistic individuals is no greater than in the general population"... I think this is stating things a bit too strongly, I haven't seen any statistical analysis of this question, but I'm inclined to take a greater rate of GI problems as a strong possibility (though I would add that there are multiple reasons why this might be so). Also, I can say in my own case that I have constant abdominal pain. So far, I've mostly just put up with it.

Zhu Que said...

Um, Do you mind if I post some of your laws on my site?

KWombles said...

David,

I understand the desire to assume that our experience is more representative of the larger population than it really may be; this is called the availability heuristic and we all fall for it.

That's why science is our best bet. We hypothesize something, usually based on what we've seen, and science lets us test whether it really is representative of the larger population.

In this case, the answer that science provides is no, it is not more prevalent.

Two studies came out in July showing no greater incidence of intestinal issues in the autistic sample compared to the control. Unfortunately, intestinal issues and distress are all too common in the general population. Yes, a sizeable proportion of individuals with autism have intestinal and abdominal issues. They just aren't any more likely to have it than someone without autism.

Not that it proves anything, but my three children are autistic and do not have any abdominal or intestinal issues. I do and always have. I could generalize from personal experience that the rate of intestinal issues in autistic people is less than in the non-autistic, because in my family it is the non-autistic individuals who do have intestinal issues. Not a representative sample and not something I should use to generalize to the wider population.

Here are the studies and a link to LB/RB where you can read more, if you are interested:

"The early stool patterns of young children with autistic spectrum disorder

by B Sandhu, C Steer, J Golding, A Emond of the University of Bristol

and

Incidence of Gastrointestinal Symptoms in Children With Autism: A
Population-Based Study

by Samar H. Ibrahim of the Mayo Clinic."



Read more: http://leftbrainrightbrain.co.uk/?p=2652#ixzz0QMFegEP6

KWombles said...

Zhu Que,

That would be fine! :-)

Clay said...

I have no idea how my mother "toilet-trained" me, no recollection at all, but would say it must have been very effective, because I've never wet the bed (since then), and only had a couple of instances in early school when I made a conscious decision to just go rather than interrupt what I was doing.

As for "number 2", only one accident of that sort, and that because I was too busy playing to run home from the schoolyard. I did have major problems with constipation, and I can't blame it all on diet (or lack of it), because
"doing that" was something I just didn't like to do! To me, wiping was disgusting, and I found that if I could put it off for a day or so, the stuff would get harder, dryer, and so easier to wipe! I got accustomed to "putting it off", maybe for as long as a week, and so often got into an emergency situation, involving pain so severe I could barely walk to get to a bathroom.

I never really "got regular" until I started working in a factory where, because of the early starting time, I started drinking coffee first thing in the morning. That really worked for me, and "being regular" in that sense is the best way to be.

Zhu Que said...

Thanks! :)

KWombles said...

Clay,

Gotta agree that coffee is a miracle! :-)

Squillo said...

Nothing of substance to add, except to say, well put, Kim.

davidbrown said...

Thanks for feedback. Good to know that people are looking into it.

Terrie said...

As someone with OCD, it could be argued that ND covers me as well. After all, I'm not exactly "typical." To me, it means:
*that my condition has nothing to do with my worth as a person
*that I have the right to appropriate, proven treatments for my issues
*that I have the same right to maximize my potential as any NT person
*that I have the right to be accepted as I am, OCd, flaws and strengths all together.

KWombles said...

Terrie,

Absolutely. Neurodiversity celebrates humanity in all its wonders and varieties.

Terrie said...

When AoA tries to tie vaccines not only to autism, but also ADD, allergies, learning disabilities and, of course, OCD, I sometimes get angry enough to spit. And one aspect of my OCD is that spit creeps me out. ;) I was grew up in the 70's and the 80's, with the vaccine schedule they use to contrast with the modern schedule. I can point to my father and grandmother, and aunt and a second counsin, all of whom show symptoms of OCD, ranging from subclinical to moderate.

The amount of time and money they spend frittering away on fake cures disgusts me. Would I like a cure for OCD? I don't think there is one. Scans have shown that our brains are different from average. I want to see money spent on developing better treatments, since currently as many as 1/3 of people don't respond to what we have out there. I want better understanding and less stigma. I want education and earlier interventions, and drugs that help with fewer sides effects.

AoA and the vaccine patrol will get me none of things I want or need. ND offers me dignity and the agreement that I have something to say about my own life. It acknowledges my struggles and also says that I am more than my struggles. Gee, I wonder why I support one and not the other? :)

KWombles said...

Terrie,

I can't imagine why! :-)