8/21/2009

The Fight over Autism

Where does autism belong? Does it belong in the DSM? Should there only be a medical model of autism?

If you hate psychology because of what I would consider to be a popular and distorted view of what psychology presently is, you're probably going to rage and scream that it is covered by the DSM. Your anger, rage, and frustration are probably going to be even greater if you believe your child was damaged by vaccines. Undoubtedly, it's going to infuriate you to have what you believe to be vaccine-induced damage covered primarily by what you perceive to be a psychological/psychiatric/behavioral model.

I don't think anyone in mainstream psychology and psychiatry believes the DSM to be infallible. Quite the opposite in fact. It is a highly flawed, poorly constructed diagnostic manual that undergoes significant revision with each new edition. It is years out of date and often bears little resemblance to the clinical and research realities in the real world. As long as the psychologists and psychiatrists using the manual keep that in mind, and I think many, if not most, do, its flaws help to keep it in check.

The problem is not so much the DSM itself, but the process through which it is created. But the even bigger problem is the disconnect that occurs in the public. Most scientists, most research doctors, and many practicing doctors view disorders and diseases through the biopsychosocial framework. We're moving away from a model of mental disorders with stigma attached to a recognition that so much of what the DSM covers is in reality not so simple as saying it is a mental defect.

There is this intertwining of the biological, psychological and social that is implicated in almost all conditions of the human body and psyche.

It doesn't matter if the DSM keeps autism as it keeps so many other disorders, because it doesn't belong exclusively to the psychological domain and psychologists who know what they are doing don't believe it does. Psychology (if the public would keep separate the Freudian, neo-Freudians, Jungians and neo-Jungians from the science that psychology, as a discipline, has focused on being) works in tandem with neuroscience and biology. Psychology as a discipline is so vast, so multimodal, that the lay public has huge misconceptions about the field, and folks, ahem, who write with passion and a level of vitriol that is certainly undeserved, about autism being classified in the DSM, distort both what autism is and what psychology as a field defines it as.

There's an element of availability heuristic in play here as well. If your child has autism and is also a child with several illnesses, you want to say that this is the autism. I don't understand how people who can view autism as not integral to who their child is can then blame the autism for everything. It's like someone having multiple diagnoses and anytime something goes wrong wanting to put all the blame on the autism itself rather than the other diagnoses.

Not everybody with autism has multiple health issues. Blaming intestinal issues on the autism just because the child has both doesn't make autism responsible for the intestinal issues. It's be like saying my diabetes is responsible for my migraines.

Just because your child is physically ill and prone to more infections doesn't mean that represents autism. My three children are extremely healthy children; they get the occasional cold, but rarely had ear infections.

Autism is a neurological condition caused by what appear to be both multiple genetic differences and potential cellular changes caused by traumas sustained while in utero. What that means is that there are probably, and in fact most neurologists specializing in autism believe to be the case, several autisms (no matter how folks at AoA might hate that idea). Same basic pattern of behaviors, but multiple causes. It is entirely possible that there is a subset of children who do have a particular genetic difference which not only results in the neurological differences labeled autism and a susceptibility to different illnesses or diseases like epilepsy.

I don't see why most reasonable people, having reviewed the literature on autism across the disciplines researching it, would have a problem with the likelihood that like multiple congenital abnormalities and intellectual disabilities, there are hundreds to thousands of genes implicated in what we have decided to arbitrarily call autism. Or that environmental factors play a role.

You have to wonder what's motivating parents who engage in an all-out warfare with parents who don't see their child(ren)'s autism with the same rigid, all-inclusive lens of outside-induced, someone-else-is-to-blame-for-my-child's-autism? What's behind that need for certainty, that refusal to accept nebulousness? Is it possible that the autism divide is not fostered by differing interpretations of scientific evidence, but instead by different personalities and coping mechanisms?

I'm not saying parents who believe their child's autism is caused by vaccines falls in a maladaptively coping subset. There are plenty of such parents who aren't vitriolic, who aren't rigid and focused on making sure everyone agrees with them. There are plenty of parents who believe vaccine reactions caused or worsened their child's autism, but they aren't filled with anger, hatred, or the need to force their ideas on others. They're perfectly willing to consider and accept the idea of multiple causations. Nor do they need to or insist on seeing their children as damaged goods. They love their child, they celebrate their child, and they focus on the positives and on helping their child achieve his or her potential. They don't go down the woo trail to do it, either. They don't need to; they aren't desperate or mired in should-have-beens.

I think that the "divide" is not nearly as big nor as vicious as some would have us believe. I think those who would are loud, are angry, and shout a lot about their narrow view of the world. I think we let that loudness cloud our perception of the autism community.

The Countering Facebook group belies this picture of the divide. We're still small, yes, with a little over 250 members, but we're an inclusive group, I think. I know we have members who do believe their child's autism was caused by or worsened because of an adverse reaction. We aren't arguing about it, though. We don't, as a group, talk much on the group itself, but a third of my facebook friends are my friends through the group, and I enjoy reading their updates on their pages. At least through the private facebook friendships, the countering facebook group is rather chatty with each other. I'm honored when one of the members asks me to be a facebook friend because I know they are inviting me into their personal lives and asking for the same.

The divide is artificial and unnecessary. As parents of children on the spectrum, as individuals on the spectrum, what matters is not what caused autism. It's a done deal. What matters is support, acceptance, and appreciation for what makes us uniquely who we are. We want the best world for our children. We have different ways of getting there.

I don't think anger and bitterness are the ways to make the world a better place. I lost my need for certitude a long time ago. I'm bound to be wrong on a great many things. Letting go of the egoistic need to be right lets me focus on being compassionate in my own kick-ass kumbaya way. Because some things, I'm fairly sure I'm right on, and those are the things I need to be kick-ass about, and that's making damn sure the world out there is ready to accept and love my children as they are.

So, I don't care where autism is, the DSM or in a medical textbook. I care how you treat my kids. I care how you treat others with disabilities. I care if you are making the world better or worse. If I think you're making it worse for others, it's time for the kick-ass.

Kumbaya.

7 comments:

kathleen said...

kick ass kumbaya right back at you kim! Yes, I think about my own families journey..I have four very unique kids-the three on the spectrum are all so very different..I have to say, I don't much think on it anymore..It is a twisted road to travel on-vast amounts of information..much of it difficult for the average parent to read. We are a sound byte world-most people glean their info from t.v. or google university..and hey if it is on t.v. or the internet it has to be right-right?
My kids are who they are-I don't know why most of them are on the spectrum..I don't believe it was vaccines. That being said, I would rather spend my time making the world a better more accepting place for them. I also encourage them to try and make the world a better place as well..I aim to raise socially conscious responsible adults-who do the best that they can-with all that they have. It is my privledge and responsibility as a mother-to guide them and to teach them by example. I want a better place for everyone-.No vitriol for me-takes too much time.

Clay said...

There's a smart fella who goes by the name Daedalus2u who has a theory about some autism, (not all, sounds like) being caused by a lack of nitrous oxide, caused by maternal stress, and that this is more likely to occur at around 3 months gestation. (Sorry if I've misrepresented his theory, I don't really understand it, but that's it in a nutshell).

When I first read that, I recalled one time at a bar when my mother was dissing my father, she told me that he had once held a shotgun to her stomach, not long after she'd figured out she was pregnant again. Of course, I don't even know if that was true, (she lied a lot, especially about him), but if true, it does fit the time-frame.

I think that both my parents probably had some traits, and these traits may have caused them (and me) some problems, but nothing that would have gotten them a Dx even today, let alone back in the twenties when they were kids. I think they carried recessive traits that weren't very noticeable, but were bound to have an autistic child (me) if they had enough children.

MY theory is that the gene pool is becoming saturated with people who carry a few traits, and when these people propagate, then naturally some of their children manifest even more traits. I married a straight-up NT - my son is "somewhat Aspie", my daughter is not. Anyway, that's my theory, and I'm sticking to it. ;-)

Roger Kulp said...

First of all,we are not going to get anywhere until we all agree autism is not a single disorder,with a single cause,but a common feature of many different conditions,with many different causes,much the way mental retardation is.Unfortunately we are not there yet.

Kanner made a big mistake in not including medical problems in autism,and an even bigger one was made in classifying it as a mental illness.Both situations need to be changed YESTERDAY!

I think if there is a fight,it is between those who have to deal with both autism and what neurodiversity,and the mental health profession likes to call "comorbid conditions",and those who only have ASDs.

I will never understand why it is so hard for most people in the ND movement to admit there is a specific subpopulation of autistics,whose initial autism was triggered by infection or high fever,and will regress any time they get and recover from a fever or infection,because as soon as that fever goes away,you will regress.If you are four years old or forty years old.

If you really study the vaccine stories,you will find a lot,but not all,of the parents will say the child first had a severe post vaccine illness,and they developed the autism after the illness,not immediately after getting the the vaccine.I may be wrong,but I don't think there has really been the immune studies that need to be done on those children who first had the post vaccine illness,and then developed autism.The post vaccine illness angle gets buried in all of the noise about mercury and metals.They are two entirely different issues,that need to be looked at separately.

I am sure there must be researchers who had wondered about unvaccinated children who developed autism after an acute infection. Which may be one reason why my DAN! doctor thinks I might be so special. We have discussed the possibility that I may be have a specific syndrome,possibly immune,that might be a specific cause of some cases of autism. The fact I am too old to have gotten the MMR shot,had severe autism as a child,moderately severe autism,with regressions,as an adult,and an unbroken history of all these immune-based medical issues,is what makes me so important.

Who knows,my doctor and I may be in the news in a year or two,with the story of our "newly discovered" cause of some cases of autism.Or it may finally prove the PITAND theory as the cause of some cases of autism.

Who knows what sort of stuff you might find if you studied more unvaccinated adults,instead of locking them away in homes and institutions,and keeping them doped up on psychoactive drugs.Autism is a medical illness that happens to effect the brain,and needs to be treated as such.

KWombles said...

Clay,

I've read Daedalus2u; his theory is an interesting one; it'd be interesting to see a study done.

You're not the only one to theorize the selection of those traits, selective mating. It probably doesn't account for all autisms, but I do believe it, coupled with difficult pregnancies, is responsible for my three children's autism. And I'm perfectly content to look at my three children, see how the traits and behaviors of my husband and me blended together to create three people who are to me some of the most interesting, fascinating and achingly beautiful people in the world. I admit I'm rather biased, though. And I can see them through this lense while still working my ass off to give them the tools they need to successfully navigate the outer world; it isn't a minimizing of the challenges they face. Sigh. But you know there are those who will read this paragraph and miss the point.

It's a damn shame that there is a subpopulation of parents out there who don't feel the same about their children, instead seeing damaged goods or children stolen from them. I wonder how that helps any of them cope with the challenges they face. How it lets their children know they are loved unconditionally? That who they are is good?

KWombles said...

Roger,

I think you overgeneralize regarding the mythical ND movement. It would be helpful if you'd remember that people who advocate for neurodiversity didn't sign a paper on a dotted line saying they believed x,y, and z, nor where they were going with it. People out there blogging or commenting on forums are representing themselves, not some vast movement.

That means they are speaking for one person. Your constant need to assume that there is a bunch of people out there who believe that x,y, and z, which by the way, it appears you have decided represents ND, makes no sense. It would be like me assuming that there is a movement of autistic adults out there and that since, for example, you, Clay, Jonathan Mitchell, Timelord, and ABFH are all autistic adults, that when you write something, it must be what the others believe as well.


I don't even think that AoA writers, contributers, commenters, and readers represent a monolithic whole and that Kim S or JB Handley speak for everyone who has any association with AoA.

I know of no reputable researcher who believes there to be one autism with one cause. I cannot help what the masses believe, although the blog's purpose is to inform and educate, and hopefully occasionally amuse. AoA for the overwhelming part is not attempting to educate and inform with accurate information. They have a purpose and I do not believe it is to be supportive or helpful. Perhaps it was originally, but it appears to be primarily about selling woo now and encouraging and fostering maladaptive coping mechanisms that keep the parents buying the woo. I hope that Anna Kennedy's article signals a departure from that.

You know, Kanner is over six decades in the past. What he had to say about autism then is historically interesting but irrelevant today. The DSM didn't exist then. And it is a fallible document that changes with time. It is not the be-all, end all.

No decent, reputable psychologist denies autism as a neurological disorder/difference (I personally prefer difference, as disorder is a social construct related to deviance) from the norm that causes significant impairments in social interaction and communicative interaction, with developmental delays (and yes, I know the third group of stereotyped behaviors or repetitive interests; I just think that we all have this, perhaps autistics simply have it more).

Are there individuals who are autistic and have accompanying medical conditions that aggravate their symptoms? Undoubtedly. Who's denying that?

Roger, you're always welcome here, but it would be helpful if you at least acknowledged that the comments you are going to write are not actually based on anything I've actually said. Maybe a disclaimer at the beginning: "I recognize that the following in no way relates to what Kim has written above, so my post should not be taken as a rebuttal of her post."

:-)

Clay said...

KWombles said:

"And I can see them through this lens while still working my ass off to give them the tools they need to successfully navigate the outer world;"

I really don't think you have anything to worry about, you already provide them the most important things a mother can give her children, the unconditional love and acceptance that should just come with the territory of motherhood, but doesn't always. I believe that food and shelter are secondary to those things, because love can go a long way toward compensating for any lack of material things. Being hungry is soon forgotten, but any sort of cruelty is never forgotten. The relationship between mother and child is most important, because it's a major influence on how a child sees him/herself, the blueprint for that child's self-image as s/he becomes an adult.

Would you think a 3 yr old having an earache was important enough to come home from work?
My mother didn't. My sisters called her at work, (Van's Grill, a tiny diner), late at night. She told them to give me a hot-water bottle. It wasn't much comfort, don't know how long I cried while staring at a bare bulb out in the hallway from my crib. I just wasn't important enough for my mother to care about, was what I was thinking. I wondered what a real mother would have done.

No, I'm not just whining about something that happened 60 years ago, but trying to make the point that if you love, accept, care for your children, those are the most important things. Sure, you have to wrangle with the schools, the teachers, the IEPs, but keep a perspective, and know that those are transient issues. Most things are, really.

KWombles said...

Clay,

I apologize for the delay in responding. It's been a busy week of adjusting to a heavy schedule.

Thank you for sharing your story and your perspective; it is always appreciated. :-)

If those three things matter most, then the parents I am fortunate enough to work together with on the forum and group and call my friends and my husband and I are doing good work. We love our children and accept them unconditionally. We see them for the beautiful people they are now and will be as they age. We see them as gifts and blessings. The people cursing at autism and how it is not a gift miss the point. The person, in his or her totality, is a gift. (I can think of a few specific people in this world who are not, but perhaps if they had been seen as such, they would not have turned out to be quite so evil or beyond redemption)