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.