3/26/2011

Autism, Community, Personality Traits, and the Chasm That Threatens

Spend anytime in the online autism community, and you'll find a rich cast of characters offering a diverse perspective on what it means to be autistic. From clinically diagnosed autistics in early adulthood to late middle age to individuals who have self-identified as autistic, I've had the chance to read over 130 autistic bloggers on the directory, in addition to other autistics whose writings appear in print, on websites, forums, and facebook. 


In addition to these bloggers who've enriched my perspective on ways that autism can manifest and be expressed at the individual level are the hundreds upon hundreds of family members who blog, write, and comment about how autism in a loved one affects the family as a whole. Right now, we have about two hundred more family member blogs than autistic individual blogs on the directory, although we are always working to increase the representation of all individuals impacted by disabilities, not just autism. 


Kathleen and I have an open door policy, and so if you scroll through the blog listings, you'll see a wide array of perspectives and belief systems. We have bloggers who believe things we personally disagree with strongly, but we think that the best thing we can do for the community is to provide everyone with the chance to get the support they need, to provide access to others with similar interests and needs.


One of the things that at least some of us notice in navigating the online autism community is just how nebulous the line is between being autistic and being NT. Many of the family members who don't identify as autistic are so close in symptoms, issues, and problems as to be indistinguishable from autistic relatives. Many parents admit that they're BAPpy (broad autism phenotype); we can see where our children got their issues (and strengths) from. That ability to recognize similarities in ourselves and our children has to ease the need to find a cause, make it less likely to go out on a limb when looking for answers and remedies. Some parents have come to recognize their own autistic traits while working with their autistic children to help them overcome issues that impair functioning.


Some folks, a small minority, have self-identified as autistic but may not actually be autistic; there are often heated battles and attempts to undiagnose or rediagnose those who have identified themselves as autistic. Parents weigh in, judging some autistics too high functioning to qualify. It can be a very nasty discourse. While very involved and certainly of profound importance to both the individual being questioned and to those questioning, I can see no good that can come from playing online armchair diagnostician. Are some people less than honest in their portrayals and identities? Probably, but I think that despite the ease of lying online, most people are trying to be honest and genuine in their interactions. I assume that to be the case until they show otherwise. Are some individuals possibly incorrect in their belief they have autism? Of course; self-diagnosis carries with it real risks of being mistaken. For an issue like autism, is it a problem, though? I guess that depends on what the person does with that belief. I personally have no interest in playing that kind of guessing and doubting game and refuse to wade into personal narratives. It's important to remember, though, that it is an undercurrent of our online community, and another way in which we are often divided.


One of the other divides is the habitual contention that arises between family members and autistic individuals in the online autism community over the question of who speaks for the autism community; epic debates have been posted on blogs and forums fighting this question out. This is not likely to change anytime soon. I'd argue that no one speaks for anyone else, nor is there any need for one to claim one speaks for the group; the whole reason for blogging is to represent one's own perspective. 


Seeing the online autism world as a set of binaries is a false dichotomy at best: anti-vaccine/pro-vaccine, pro-cure/anti-cure, biomedical/behavioral therapies, autistic/neurotypical. There aren't clear dividing lines, and the need to continue to see the community and its various members as members of a particular side causes all sorts of weird falling outs; there seems to be a real problem with seeing people as individuals who have their own opinions which cross all sorts of boundaries and lines. Sometimes, long established relationships can be ended swiftly by a difference in opinion despite a wide body of issues where there is agreement. In other cases, odd alliances can occur where people despite being on opposing sides in one of the autism dichotomies come together to work on a larger, more important goal. 


It's never boring, that's for sure.


One of these divisions in the community is whether non-autistic individuals can ever understand what it means to be autistic, coupled with the division as to whether autism is a cluster of personality traits or a disability to be mitigated. Many autistic individuals identify deeply with their autism and it is who they are; some are not so tightly attached to an autistic identity and see both the good and the difficult associated with various autistic traits, while some autistic individuals identify closely with their autism but see it solely comprised of negatives to be cured at all costs. Those can make for some fascinating discussions, to say the least. 


When you add in the various family members whose opinions range over similar territories, it's a wonder any of us find a way to communicate with each other. It certainly explains all the various conflicts the community finds itself engaged in at any one time.


But what of this idea of autistic traits as personality traits, as some segments of the autism community posit autism to be? If it's a different neurological wiring and it doesn't rise to disability, just difference, then this would seem to be a fruitful area for research. Wakabayashi, Baron-Cohen, and Wheelwright (2006) examined the question of whether autistic traits as measured on the AQ and personality traits as measured on the NEO-PI-R are related. While there were some particular common areas (high neuroticism, low extraversion and conscientiousness), the researchers tentatively conclude that autistic traits might best be viewed as a "sixth factor of personality": "[f]rom the results obtained on the AQ and the NEO-PI-R, it is difficult to argue that autistic traits are just a part of the major personality dimensions."


It's clear that Baron-Cohen and his fellow researchers have a reasonable basis for concluding that autistic traits exist on a continuum; other research on milder autistic traits in family members bears out the idea that there is no clear dividing line between autistic and non-autistic and considerable overlap in traits. Baron-Cohen has written in the past that Asperger's is better conceived as a difference in cognitive style than a disability, noting that individuals with autism with an intellectual disability obviously have a disability (sure to be another area where there's a divide). 


Individuals like the ones Baron-Cohen is describing with Asperger's and HFA are capable of living independent lives with minimal to no assistance and may indeed represent a sixth personality factor; however, there can be no denying that a significant majority of those on the spectrum are without a doubt disabled. It is possible that these individuals may be exhibiting personality traits writ in the extreme and coupled with intellectual deficits and other co-morbid conditions that work to make those traits more intense and dysfunctional, leading to the similarity in traits across the ever-widening spectrum. While possible, I think it unlikely to explain the most severely disabling cases of autism. I'm afraid it's a comforting thought for many to believe that the most severely disabled, the most vulnerable, are really not, if only ways were found to help them communicate (leading to support of debunked facilitated communication). Facing the reality that there are a significant number of individuals who are severely handicapped and dealing with intellectual disability along with their autism is daunting.  


Thomas Armstrong argues in his book Neurodiversity that some traits now labeled as disorders in the DSM may have evolutionary adaptive value and uses anxiety disorders, bipolar, schizophrenia, and autism as examples. A little bit of anxiety might keep one alert, on one's toes, and more likely to perform more quickly, but an overabundance of  anxiety can be crippling. In the same manner, perhaps a small amount of autistic traits may have an advantage, but an abundance can be devastating. Wishing otherwise will not make it so. Hard work, dedication, and a commitment to humane care that honors the autonomy of the individual while providing the necessary supports can certainly go a long way towards mitigating disability and helping to provide the most severely disabled a good quality of life.


The one thing that becomes more apparent in the straddling of two different domains, that of the autism community involving the autistic individuals and their family members and that of the research/medical/psychological community, is that there are at least two fundamentally difference conceptions of autism going on: one where autism is still discussed as a disease and disorder and its polar opposite, that of autism as difference. It's not quite that neat, of course, or easy. Some researchers like Baron-Cohen straddle domains and divides, seeing both the difference and the disorder. Some family members and individuals do so, as well. If there's one thing I'm sure of it's that the autism community isn't going to get less messy anytime soon. Ignoring the reality of serious disability only makes the problems we face as a society all the more unlikely to be resolved successfully. 


In the meantime, as we wade through the murky waters of competing agendas and disparate ideologies, forging community, building support, and creating alliances that bridge those messy and capricious divides must continue; perhaps in that way we can see the forest for the trees.


References

Wakabayashi, A., Baron-Cohen, S., & Wheelwright, S. (2006). Are autistic traits an independent personality dimension? A study of the Autism-Spectrum Quotient (AQ) and the NEO-PI-R. Personality and Individual Differences, 41(5), 873-883. doi:10.1016/j.paid.2006.04.003

10 comments:

autismandoughtisms said...

Nicely said.

One of my main issues with seeing autism as "mere" difference, is how it trivialises the very serious challenges my son faces (and I as a mother face dealing with him). I fight hard to get him the services and help he needs, and to have other people in the autism community saying and doing things that make my job harder, is frustrating to say the least.

At the same time, I recognise that I cannot and do not speak for families and children at the less severe end of the spectrum.

I think you've done a good job in this post of describing the problems and trying to bring a sane voice to the disagreements.

Looking for Blue Sky said...

It sounds as though you are calling for tolerance and respect for all the different views within the autistic community. I believe that that will build a stronger and more effective community. To me all the fighting seems pointless - agree to disagree is not that hard.

Autism Reality NB said...

One of the greatest myths in the autism community is the myth that there is an autism community.

The pervasive developmental disorders now referred to as autism are still just that ... disorders. They are disorders that restrict the lives of many individuals across the globe.

Those that can speak for themselves do so. With respect to young children or those who are severely impaired intellectually it is usually parents but can be other caregiver who speak for them. Persons who self identify as autistic may or may not actually be autistic.

As a parent fighting to improve the quality of life of my son I find these endless, meaningless debates about disorder versus difference to be pure nonsense. In the practical, real world, the world that is such a challenges for so many of our loved ones such debates do nothing to improve the quality of my son's life or to give me any great insights about how he thinks or experiences the world. I learn that from him, and from research, not from a mythical community that includes undiagnosed persons and those with vastly different challenges.

The challenges faced by each person with an autism disorder is different. Some will recover, some will not. Some are featured in movies and some run successful businesses, write blogs, and build lucrative careers as authors and speakers. Others live out their lives in the residential care of others.

Autism is a disorder, it is a serious disability. More serous for some than others. It is not a difference and it is not a community.

sharon said...

This is a timely article for me as I recently blogged about our little family exhibiting a multitude of ASD traits despite only my young son having a dx (post called Surfing The Spectrum). My husband and I took the AQ test online and surprise, surprise both of us scored highly, meaning close to the beginning of the defined spectrum.
I wonder if part of the strong positions that so many of us take on the dichotomous issues you raise are precisely because many of us do have personality traits that mean we tend to think in black and white terms and at least for myself struggle to engage in diplomatic discourse.

farmwifetwo said...

I put my nickel's worth in at Harold's. If the computer didn't eat it... which it told me it did and I'm not about to type it out again.

Personally, I ignore the adult bloggers and from what I can tell, so does the rest of the world. Ironically, very few people in RL spend any time in Autism-land online. Which is also obvious at the lack of change-over/increase in blogs in the last 5yrs. I don't know if they have moved to Facebook or not as I'm not on it.

Harold's stance on IQ drives me batty... sorry Harold but it does and that's OK too b/c we shouldn't always agree, it gives other's the opportunity to decide for themselves... but as I posted "why not find a test that actually tells you what he can accomplish instead of one that is set up to automatically fail him". Just ask a psychometrist they will tell you exactly that. Profound autism = profound communication delay. Anyone who claims that just b/c someone has a difficulty communicating is automatically incapable of understanding and learning b/c of their IQ score... I hope you never have a stroke or other injury where you cannot communicate yourself. But, that's society's attitude... My youngest and I have worked hard to prove it wrong and continue to do so.

I simply ignore the camps. I wade it at times... we've been there, done that, been swatted by the system a time or to, learned a few tricks along the way and of course have never claimed to be low on opinions :):)

But we just keep doing what we're doing and yesterday my youngest checked out all the groceries at the village store. Maybe one day he'll even get a job there?? You never know.

Diane said...

I'm glad you have helped to provide a place for a wide range of opinions and ideas to be expressed. As a parent of a higher-functioning child who still needs lots of assistance, I find it very helpful to be able to exchange ideas with other parents who have had or are having similar experiences. I don't expect to provide anything useful for people who are having very different experiences, although I do find some of their stories very inspiring and enlightening, for which I am grateful.

As one of those "think I might be on the spectrum" individuals - my reasons for believing this are on my blog, currently being ignored by the "rest of the world" - I'm not looking to connect with anybody other than individuals who find themselves in a similar position, diagnosed or not. I'm not looking for any assistance from anybody other than a chance to communicate and to know that I am not - as I have been convinced throughout my life - alone and "other". I don't expect anyone else to have an interest in these conversations, just as I'm not particularly interested in their opinions, which is why I choose other blogs to read. There are, however,those parents who have expressed getting some value from hearing these viewpoints from adults, and I'm glad to have an opportunity to communicate with these folks, too. That's kind of the point - for people who are interested in communicating with each other to be able to find one another and to share ideas apart from the rejection of the rest of the world - or even the the rest of a particular community.

What I think is great about this "community" concept is that it provides a way for each of us to come together with people with whom we want to share. Even in a real world traditional community, everyone doesn't know each other, and everyone doesn't agree. We meet people in various ways, and we feel a connection with some and not with others. With some of those others, we may occasionally have our ideas challenged in a way that's useful to us. And then there are those with whom we're just going to disagree and not seek any further communication at all. I don't think having different ideas or opinions makes this any less of a community - it makes it more of one.

Socrates said...

I was going to make a long well-sourced and passionately argued reply until I saw The Beard. He turned up on Astrid's blog to tell the blind hospital patient with Classic Autism that she didn't know squat on account of not being disabled enough to have an opinion worth hearing. Later he turned-up at the blog of the very lovely Tithen Ara, to tell the a non verbal guy with Classic Autism and intellectual disabilities that he didn't know squat on account of not being disabled enough to have an opinion worth hearing.

The reason there is no discernible or worthwhile autism community is through the work of people like the self proclaimed Canadian "hard man" with the beard.

It makes me feel sick to even post on the same comment thread as him.

Aspergirl Maybe said...

Blogger doesn't seem to like me, but I'll try this one more time!

Fascinating post with lots of layers; I'll comment on one of them:

"Of course; self-diagnosis carries with it real risks of being mistaken. For an issue like autism, is it a problem, though?"

My psychologist would say no to this. He was the one who suggested that if it helps me to think of myself in those terms, then that's what I should do.

He sees a diagnosis not as the end of the process, but as the beginning. What is important is what you do with it and how you move forward.

I also would say that a diagnosis is useful when the presentation of autism is significant enough to need supports and services that are only available with that sort of proof, such as in the education system or the medical system.

You shouldn't need that type of proof to be accepted by other people as a valuable person deserving of dignity and respect.

KWombles said...

I would agree with your assessment; when it becomes a launching off point, the mechanism by which you make sense of and move forward with your life, it can be a very productive and beneficial thing. I've seen it used as a crutch and an excuse for destructive behavior, too, though. However, I think that's fairly obvious.

Understanding myself and other family members better because of being able to identify certain personality traits or issues that are a part of my children's autistic behaviors and traits has been a positive experience for our family. :-)

chavisory said...

Autism Reality NB, I'm sorry to hear that you don't think there's an autism community...because that community has already, in a relatively short period of time, imparted to me a wealth of knowledge and support and a welcome so warm it defied my imagination. And I've learned just as much from reading about kids much more severely affected than me as I have from people whose expression is closer to my own.